Springer Series on REHABILITATION
Volume 2
DISABLED PEOPLE
as SECOND-CLASS
CITIZENS
Myron G. Eisenberg, Ph.D.,
Cynthia Griggins, and Richard J. Duval
Editors
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Springer Series on
REHABILITATION
Editor: Thomas E. Backer, Ph.D.
Human Interaction Research Institute, Los Angeles
Advisory Board:
Carolyn L Vash, Ph.D., Elizabeth L. Pan, Ph.D., Donald E. Galvin, Ph.D.
Ray L. Jones, Ph.D., James F. Garrett, Ph.D., Patricia G. Forsythe,
and Henry Viscardi, Jr.
Volume 1
The Psychology of Disability
Carolyn L. Vash, Ph.D.
Volume 2
Disabled People as
Second-Class Citizens
Myron G. Eisenberg, Ph.D., Cynthia Griggins, and
Richard J. Duval, Editors
Volume 3
Behavioral Approaches to
Rehabilitation: Coping with Change
Elaine Greif, Ph.D. and Ruth G. Matarazzo, Ph.D.
Myron G. Eisenberg, Ph.D. is the Coordinator of Psy-
chosocial Rehabihtation on the Spinal Cord Injury Serv-
ice, Veterans Administration Medical Center, Cleve-
land, Ohio, Clinical Assistant Professor of Psychology,
Case Western Reserve University, and Adjunct Asso-
ciate Professor of Psychology, Kent State University. He
is a National Sex and Disability Task Force member and
a U.S. Contact Person for the International Clearing
House Concerning Social and Sexual Intercourse for
Disabled Persons, an organization co-sponsored by The
Rehabilitation International Social Commission and the
Swedish Central Committee for Rehabilitation. Dr. Ei-
senberg has published widely in the area of rehabilita-
tion and serves as Consulting Editor for the Journal of
Sex and Disability (Human Sciences Press). He has re-
ceived numerous awards in recognition of his work. Dr.
Eisenberg currently serves as President to the American
Psychological Association's Division of Rehabilitation
Psychology.
Cynthia Criggins is a doctoral student in Clinical Psy-
chology at Case Western Reserve University and a
graduate of the Gestalt Institute, Cleveland, Ohio. She
has had extensive work experience in the areas of medi-
cal psychology and rehabilitation, and is currently em-
ployed at the Free Medical Clinic of Greater Cleveland.
Richard J. Duval is a psychologist in private practice in
Cleveland, Ohio. Previously, he worked on the Spinal
Cord Injury Service at the Cleveland Veterans Adminis-
tration Medical Center as well as on the Comprehensive
Care Unit at Cleveland Metropolitan General Hospital.
His present areas of interest include behavioral medi-
cine, the psychophysiology of anxiety and depression,
and the development of coping skills training proce-
dures for the physically disabled.
Disabled People as
Second-Class Citizens
Myron G. Eisenberg, Ph.D.
Cynthia Griggins
Richard J. Duval
Editors
Foreword by Max Cleland
Former Administrator, Veterans Administration
>
Springer Publishing Company
New York
Copyright © 1982 by Springer Publishing Company, Inc.
All rights reserved
No part of this publication may be reproduced, stored in a
retrieval system, or transmitted in any form or by any means,
electronic, mechanical, photocopying, recording, or otherwise,
without the prior permission of Springer Publishing Company, Inc.
Springer Publishing Company, Inc.
200 Park Avenue South
New York, New York 10003
82 83 84 85 / 10 9 8 7 6 5 4 3 2 1
Library of Congress Cataloging in Publication Data
Main entry under title:
Disabled people as second-class citizens.
(Springer series on rehabilitation; 2)
Includes bibliographical references and indexes.
I. Handicapped--United States—Addresses, essays,
lectures. 2. Discrimination— United States— Ad-
dresses, essays, lectures. I. Eisenberg, Myron G.
II. Griggins, Cynthia. III. Duval, Richard J.
IV. Series. [DNLM: 1. Rehabilitation— Psychology.
2. Handicapped— Psychology. 3. Prejudice. Wl
SP685SF V. 2 / HD 7255 D611]
HV1553.D55 362.4'042'0973 81-13546
ISBN 0-8261-3220-0 AACR2
ISBN 0-8261-3221-9 (pbk.)
Printed in the United States of America
Contents
Foreword Max Cleland vii
Acknowledgments viii
Contributors ix
Introduction xiii
Part I: Societal Contributions to Discrimination 1
1 Disability as Stigma 3
Myron G. Eisenberg
2 Should Every Bus Kneel? 13
John S. Hicks
3 The Disabled Face a Schizophrenic Society 30
Cynthia Griggins
4 Social and Psychological Parameters of Friendship
and Intimacy for Disabled People 40
Constantina Safilios-Rothschild
5 Claiming the Self: The Cripple as American Male 52
Leonard Kriegel
6 Sex and Disability: Are They Mutually Exclusive? 64
Mary D. Romano
Part 11: Institutional and Bureaucratic Contributions to
Discriminatory Practice 77
7 The Law Speaks: Disability and Legal Practice 79
Oliver C. Schroeder, Jr.
8 What Every Architect Should Know 88
Raymond Lifchez and Cheryl Davis
9 Transportation and the Needs of the Disabled 103
Jerome R. Dunham
vi ' Contents
10 Keeping the Disabled out of the Employment Mar-
ket: Financial Disincentives 123
Bonnie Sims and Scott Manley
11 Health Care Delivery: Problems for the Disabled 137
Judith Falconer
12 Families of the Disabled: Sometimes Insiders in
Rehabilitation, Always Outsiders in Policy Plan-
ning 152
Betty Goldiamond
Part III: Coping with Physical Disability 171
13 Psychological Theories of Physical Disability: New
Perspectives 173
Richard J. Duval
14 Behavioral Rehabilitation: The Promise of Things
to Come 193
Henry Slucki
15 The Chronic Pain Syndrome: Killing with Kindness 217
Alexis M. Nehemkis and Carol Cummings
Part IV: A Call to Action 233
16 Creative Vocational Planning for the Disabled 235
Russell Bruch
17 Independent Living: The Right to Choose 247
Center for Independent Living
18 Consumer Activists: Promoting Equal Access to the
Marketplace 261
Lilly Bruck
19 Social Crisis and the Future of the Disabled 276
Elliott A. Krause
Appendix: Disabled Peoples' Bill of Rights 292
Author Index 295
Subject Index 298
Foreword
A new minority group is making its presence felt in our society.
Certainly not insignificant in numbers, its members represent one in
every eleven Americans. They are the disabled who have been rele-
gated to a second-class position. Until recently, they remained clois-
tered away from the able-bodied public, silently waiting to be liber-
ated from lives of quiet desperation. This role was accepted by most
as a proper and legitimate one for people whose battered bodies or
minds serve as a vivid reminder of the fragility of the human state. In
a society which demands uniformity and worships physical health
and beauty, the physically disabled have often been viewed as out-
casts from our social and work circles.
Now, partially motivated by other disadvantaged groups who
have organized, fought for, and won new personal freedoms for
themselves, the physically disabled are no longer satisfied with their
second-class status. They are no longer content to accept a social
structure which has, by omission or commission, kept them out of the
employment market; a society whose buildings and public transpor-
tation systems are not accessible, and whose educational systems are
not designed to accommodate them.
From this new perspective, successful coping with physical disa-
bility necessitates more than merely learning to live with recurring
pain and frustration. It means acquiring a whole new life-style in
which the disabled actively work to confront and change dominant
societal attitudes. Disabled People as Second-Class Citizens focuses
on these various forms of discrimination experienced by the physi-
cally disabled as they attempt to reintegrate themselves into society.
The text attempts not only to sensitize the reader to these issues but
also to suggest new and creative solutions for remediating them. It
does not attempt to produce compromises from divergent viewpoints
or conflicting data. Its purpose is to raise major issues that the investi-
gators see emerging in the field of physical disability and rehabilita-
tion. Useful as a resource to practitioners in rehabilitation settings, the
text is also of value to disabled individuals who themselves are de-
manding information from which they can develop creative and effec-
tive strategies to deal with discriminatory practices. This book is de-
signed to assist the disabled to overcome widespread discrimination,
enabling them to develop more rewarding and satisfying life-styles.
vii
viii \ Foreword
A new social revolution is at hand, one in which another minor-
ity group, the disabled, is seeking its full rights as citizens. The
public is becoming increasingly aware of their needs as reflected
through the passage of the Rehabilitation Act. In the American tradi-
tion of accommodating such groups, I am confident their struggle
will be won. It is hoped Disabled People as Second-Class Citizens
will also aid them in their quest.
Max Cleland
Former Administrator
Veterans Administration
Acknowledgments
Sincere appreciation is extended to Elaine White for the
care shown in typing the many revisions of this manu-
script. The editors also wish to acknowledge the assis-
tance provided by Barbara Hampton, who prepared the
final typed version of this work.
Contributors
RUSSELL BRUCH, M.A. is the Director of Life/Career Development, Da-
vis, California. He is the former Director of the Placement Center at the
University of California at Davis. Mr. Bruch is a colleague of Richard Bolles,
the author of What Color Is Your Parachute? (Ten Speed Press, 1981), a
manual for life and career planning which has been on the best seller list for
approximately six years. Although Mr. Bruch has not worked specifically
with the disabled, he is an authority on vocational counseling, and salient
issues in this area are similar for both the disabled and able-bodied.
LILLY BRUCK, Ph.D. is the former Director of Consumer Education of
New York City's Department of Consumer Affairs. Her book, Access: The
Guide to a Better Life for Disabled Americans (Random House, 1978), has
been nationally acclaimed as a primer in its field. Currently Dr. Bruck is a
consumer advocate and broadcaster on "In Touch," New York's Radio Infor-
mation Service for the Visually and Physically Handicapped. She contri-
butes a weekly commentary on consumer affairs for disabled consumers to
"Let's Hear It," a program for print-handicapped listeners on National Pub-
lic Radio, beamed via satellite to radio stations and radio reading services
around the USA.
CENTER FOR INDEPENDENT LIVING (CIL) is a nonprofit organization
devoted to helping people with disabilities make a successful transition from
nursing homes to independent living. CIL has accepted as its primary task
changing the environment, removing architectural, communicational, and
attitudinal barriers confronting the disabled. To meet this goal, a variety of
services have been made available to its clients including attendant referral
services, deaf services, a housing department, an independent living skills
program, a transportation service, services for the visually impaired, and a
job development, training, and education program. A Disability Law Re-
source Center to deal with the disability rights movement has also been
established at the Center.
CAROL CUMMINGS, Ph.D. is Director of Psychological Services at the
Centinela Hospital Pain Management Center, Inglewood, California. She
has lectured widely on the psychological aspects of chronic pain and is the
author of numerous articles on the psychological assessment and treatment
of chronic pain.
CHERYL DAVIS is a teacher (University of California, Berkeley, and Har-
vard), writer, and environmental consultant to architects, planners, and gov-
ix
X ' Contributors
ernment agencies. Ms. Davis has spina bifida and thus has personal experi-
ence of the architectural barriers facing the physically disabled. She has col-
laborated on an Exxon Education Foundation funded project investigating the
use of the handicapped as consultants in architectural design education.
JEROME R. DUNHAM, Ph.D. is an Assistant Professor in the Rehabilita-
tion Department of Seattle University, Seattle, Washington. Except for peri-
ods of counseling able-bodied persons, most of his professional career has
been working with the visually impaired. Dr. Dunham has himself been
blind since the age of sixteen. He has served on many rehabilitation-
oriented committees and boards in Washington State, including the Gover-
nor's Committee on Employment of the Handicapped, the Washington Co-
alition of Citizens with Disabilities, the Washington Council of the Blind,
and city, county, and Seattle University Section 504 committees.
JUDITH FALCONER, Ph.D. is a Staff Psychologist at the Veterans Admin-
istration Medical Center in Cleveland, Ohio, where she works with hemodi-
alysis and kidney transplant patients and with patients undergoing total lar-
yngectomies. Her interests include the use of hypnosis and auto-hypnosis
with the chronically disabled, psychosocial development in the congenitally
deaf, and compliance with medical regimens.
BETTY GOLDIAMOND, Ph.D. has expertise in a variety of areas, including
sociology, labor relations, psychology, and gerontology. She has taught at
Southern Illinois University and at Roosevelt University and has also been
employed as a Research Associate at the University of Chicago. In addition,
she has worked as a labor organizer. Dr. Goldiamond's familiarity with prob-
lems and discrimination which family members face when disability strikes
are well known to her from both personal experience and as a volunteer at
the Rehabilitation Institute of Chicago.
JOHN S. HICKS, Ed.D. is the Coordinator of the Graduate Programs in
Special Education and an Associate Professor in the Division of Psychology
and Educational Services at Fordham University, New York City. Prior to
assuming a position at Fordham, Dr. Hicks was associated with the school
and rehabilitation center of United Cerebral Palsy of Queens as a part-time
research coordinator. He has published in the area of language disorders in
emotionally handicapped children and programs for main-streaming the han-
dicapped. In addition, he directed a series of research projects examining
the adjustment of parents of preschool handicapped children and the effects
of the disabling condition on the family unit.
ELLIOTT A. KRAUSE, Ph.D. is Professor of Sociology at Northeastern Uni-
versity, Boston, Massachusetts. He is the author of The Sociology of Occupa-
tions (Little, Brown, 1971), and Power and Illness (Elsevier, 1977), a book
which investigates the political sociology of health and medical care sys-
Contributors xl
tems. He has served as a consultant to local, state, and federal agencies,
including the Office of Economic Opportunity and the Office of the Secre-
tary of Health, Education and Welfare.
LEONARD KRIEGEL, Ph.D. is a Professor of English at the City College of
New York. He has been both a Guggenheim and Rockefeller Fellow, has
lectured throughout the United States and Europe, and has authored five
books, the most recent of which is titled On Men and Manhood (Hawthorn,
1979). The theme of many of his texts reflect his personal experience with
and societal reactions to disability.
RAYMOND LIFCHEZ, M.A. is a practicing architect and an Associate Pro-
fessor at the University of California at Berkeley. Since 1974, in practice,
teaching, and research, he has focused on psychosocial issues of environ-
mental access for vulnerable populations, including children, the physically
disabled, the frail elderly, and the socially and economically disadvantaged.
Mr. Lifchez has served as an architect and consultant on barrier- free design
in private industry, technical consultant to the California Department of
Vocational Rehabilitation, member of the University of California Chancel-
lor's Committee on Environmental Access for the Handicapped, and consult-
ant to the American Association for the Advancement of Science's Project on
the Handicapped.
SCOTT MANLEY, Ed.D. is the Assistant Hospital Director at the Craig
Hospital, Rocky Mountain Regional Spinal Cord Injury Center, Englewood,
Colorado. Dr. Manley has published in the area of rehabilitation and is
actively involved in acquainting the professional community with the voca-
tional needs and potential of the spinal cord injured.
ALEXIS M. NEHEMKIS, Ph.D. is currently a member of the psychology
staff of the Veterans Administration Medical Center, Long Beach, California,
where she serves as a consultant to the Medical Service. She is also a mem-
ber of the clinical faculty of the Department of Psychology at the University
of Southern California. Dr. Nehemkis was formerly affiliated with the Los
Angeles Suicide Prevention Center and has served as a behavioral consult-
ant to the Los Angeles County Medical Examiner-Coroner's office. She has
published in the areas of suicide, indirect self-destructive behavior, drugs,
chronic pain, and consultation-liaison psychology.
MARY D. ROMANO, M.S.W., A.C.S.W. is a Supervisor in the Social Service
Department, Presbyterian Hospital, New York City. Mrs. Romano has prac-
ticed in acute and rehabilitation hospitals and served as a consultant to
consumer and professional organizations concerned with the problems of the
ill and physically disabled. She has published numerous articles related to
health care service delivery, psychosocial aspects of illness, the management
of staff problems, and sexuality and disability.
xil Contributors
CONSTANTINA SAFILIOS-ROTHSCHILD, Ph.D. is a Professor of Human
Development at The Pennsylvania State University. She has written a text,
The Sociology and Social Psychology of Disability and Rehabilitation (Ran-
dom House, 1970), published a number of articles on disabled peoples'
social movements and self-definition, and authored articles on the interna-
tional dimensions of rehabilitation research and policy especially in devel-
oping nations. In 1977-78, Dr. Safilios-Rothschild served as a consultant to
the World Health Organization in epidemiological research on the disabled
in India.
OLIVER C. SCHROEDER, Jr., J.D. is the Albert and Richard Weatherhead
Professor of Law and Criminal Justice at the Case Western Reserve Univer-
sity (CWRU) Law School, and Director of the Law and Medicine Center at
CWRU. Mr. Schroeder's professional activities include service as a Fellow
in the American Bar Foundation and membership on the Committee on
Procedures on the Hospitalization and Discharge of the Mentally Disabled.
Mr. Schroeder's expertise and interest in the area of forensic medicine and
informed consent have resulted in numerous publications and lectures on
these topics.
BONNIE SIMS, M.A., is the Home Coordinator at the Craig Hospital, En-
glewood, Colorado. As a certified rehabilitation counselor, she has also
worked for the General Reinsurance Corporation as a Rehabilitation Coordi-
nator, responsible for expediting cases involving catastrophic injuries. A pri-
mary goal Ms. Sims established for herself while in this position was to
educate primary insurers in the philosophy that early involvement ulti-
mately results in the prudent use of primary funds and savings to the insur-
ance industry.
HENRY SLUCKI, Ph.D., has been a Senior Research Associate in the Medi-
cal School at the University of Southern California since 1969. His teaching
responsibilities include medical students, interns and residents, members of
the hospital staff, and allied health professionals, as well as advanced stu-
dents in psychology, education, rehabilitation, and social work. Dr. Slucki's
focus of research and training is in the experimental analysis of behavior
with a special emphasis in its application to rehabilitation and medicine. In
addition, he continues to work in the area of behavior modification as it
pertains to education and self-management.
Introduction
"Imagine confusing gynecology with the study of women in society,
or dermatology with the study of racism."
Absurd, right? However, these words, written by one of the dis-
abled contributors to this text, describe fairly accurately the con-
stricted and myopic thinking that has long characterized not the
study of feminism or racism in our society, but the study of disability.
As ludicrous as the idea may sound, it nevertheless reflects the per-
spective that has guided our treatment of disability and the disabled.
The study of the blind has been the study of failures in the visual
system, or the rehabilitation of the blind via aids such as braille,
canes, and dogs. The study of paraplegia has been the study of spinal
cord injuries and the use of complex technological gadgetry to com-
pensate for paralyzed limbs. The study of chronic renal failure has
been the study of kidneys — real and artificial. And so on. In each
case, regardless of the nature of the disability, the study of the dis-
abled has amounted to nothing more than the study of physical mal-
functioning— and compensating for it.
Until very recently this paradigm has dominated medical and
rehabilitation practice. As with all paradigms, those with power and
control promulgated it and in effect set the limits of those fields.
With their paradigm they defined what could and could not be
studied, which questions could be asked and which could not, what
techniques could be used and which could not. The paradigm sug-
gests that that is all there is to disability — physical malfunctioning
and compensating for it — and so for many years that is all that was
seen in journals, taught in schools, heard in conferences and, worst
of all, recognized in treatment centers.
But all along the disabled themselves have known that there was
more to disability than a malfunctioning bodily system. They have
known that this was not the only, or even the most important, of their
problems. They have known that their troubles did not end when
they were discharged from the hospital or rehabilitation center, com-
plete with wheelchair and adapted van. Their troubles were, in fact,
just beginning, for being disabled, they know, means living in the
world as someone "different," "abnormal," "inferior." It means deal-
ing with far-reaching and mind-boggling problems. It means people
shying away from you, pitying you, or rejecting you completely. It
xiii
xiv Introduction
means trouble finding a job or a decent place to live. It often means
living at the poverty level and going on welfare. It means discrimi-
nation. Being disabled is not just having a bodily defect — it is a
complex social-political reality that one lives with day by day, year
by year.
The disabled themselves have known this, but they have long
tolerated the limited vision of the professionals who ruled the disa-
bility field. They bought into the treatment/rehabilitation/sympathy
model, apparently believing they had no right to another life-style or
that there simply was no way to question it. They accepted the para-
digm and the role it prescribed for them — patients, whether in or out
of the hospital, and second-class citizens. That is, until recently.
As this book is being written in late 1980, one can see signs
everywhere that the disabled are no longer keeping their ideas, their
experiences, or their needs as disabled people to themselves. A
march on Washington by disabled people. A recent Supreme Court
case involving a hearing-impaired woman who sued the college that
denied her entrance into a nurses' training program. Lawsuits being
brought against public transit systems for being nonaccessible. Books
being published about disability and disabled persons. Films being
produced such as Coming Home, The Other Side of the Mountain,
The Deerhunter, and The Elephant Man, which feature seriously
disabled characters. Two hit Broadway plays about disabled people.
And recently, in a small town, mannequins on crutches and in
wheelchairs sporting the latest fashions during a disability awareness
week. The disabled are emerging as a group, saying, "we are more
than 'defectives' to be fixed up and sent home to hide away. This is
our reality. Look at it . . . look at us."
One might well ask: why? Why now are the disabled becoming so
visible, so vocal, and so discontent? Why are we being called upon as
a society to become more "aware"? It is not difficult to understand if
one considers a number of social, political, and medical developments
that have changed our society over the past 20 years.
First and most basic is the fact that there are simply more dis-
abled people in our society than ever before. If the average person
has not become aware of this increase simply by seeing, hearing
about, or knowing more disabled individuals among his friends,
family, and aquaintances, then he or she has read the statistics avail-
able for the first time with the 1970 Census. (Prior to that census, no
realistic estimates were available as to the number of disabled per-
sons living in this country.) The statistics indeed were startling to
many. One out of every eleven Americans — over 9% — were identi-
fied as being disabled. This means that the disabled are no longer
Introduction xv
isolated, rare cases here and there. They are indeed a minority of
considerable size! And with the 1980 census, this minority is ex-
pected to be even larger.
Why the huge numbers? And why are the numbers growing?
Though the reasons are complex, put simply, we have our advanced
technological society to thank for this. As advanced medical proce-
dures continue to save more lives from disease and trauma and en-
able Americans to live longer, there are simply more scarred and
less-than-perfect bodies around. This is the irony with which we
must live: As our highly polluted and dangerous environment
stresses and batters bodies, we are able to save them — often not able
to restore them to their original state of health — but preserve them in
some less-than-optimal condition, thereby adding to the ever-
growing minority — the disabled. And now, no longer isolated cases,
but indeed a minority group, the disabled find each other, especially
in large urban centers. They are meeting and beginning to see them-
selves as a group.
The sheer number of disabled is not the only reason for their
increased visibility. The type of person who now finds himself or
herself disabled is changing the character of this group drastically.
Consider the old stereotype of the disabled person: a sickly, perhaps
elderly individual, unable to be very active, slowly deteriorating as he
or she moves toward death. While never true of all disabled people,
this stereotype is becoming increasingly inaccurate as disability
strikes younger people who are then treated and given near-average
life expectancies — lifetimes in wheelchairs or without limbs. Con-
sider for example, a totally new creature — the surviving paraplegic or
quadriplegic. Virtually unknown prior to World War II and the discov-
ery of antibiotics, these victims of auto accidents, poliomyelitis, and
war injuries have been saved to lead lives in wheelchairs, iron lungs,
or beds, sometimes for 50 to 60 years! Who ever before heard of a
young, mentally alert and active person, in relatively good health
(except for his or her paralysis) confined for life to a wheelchair?
Historically, this is a totally new phenomenon. And it is obvious that
the kind of lives these individuals will lead, the opportunities they
will seek or demand, will not be comparable to those of the
weak, elderly, or sickly disabled person, more numerous in the past.
As mentioned above, these more numerous, younger, and more
active disabled individuals started finding each other — in hospitals,
in institutions, in schools, and in large cities. They talked and shared
their experiences and the reality they knew — that disability was
more than physical. During the 1960s, the era of the free speech
movement, civil rights activism, anti- Vietnam war demonstrations.
xvi Introduction
and the beginning of the women's movement, it was becoming more
and more common for the dissatisfied and discontented to organize
and speak out. It was inevitable that the disabled, too, would emerge
from their silence and passivity. Like other minorities they, too,
would start to question their role as children, the authority of the
establishment, and their second-class status. They were bound to
see, as other minorities, that they themselves had skills, that they
could take charge of their own lives, and that their oppression was
unnecessary, but that organization and activism would be necessary
in order to change it. And so they have.
Being the only minority (other than children) who clearly must
rely on another group in society (medical/rehabilitation professionals
who treat them), the disabled face a special problem. They not only
must fact the judgments, stereotypes, and discrimination they en-
counter within society in general, but they must deal with the
"keepers of the paradigm" — the professionals who study them, treat
them, write about them, and in many ways, mediate and facilitate
their contact with the world. These are the people who often hold
the keys, who, at the earliest moments, can help or hinder the dis-
abled individual's struggle with his or her reality. They hold a great
deal of power over the disabled individual, and the struggle against
old attitudes and roles must begin here.
The purpose of the book is to do just that: begin reaching out to
the professional community with the disabled person's message — that
being disabled in this society is a complex social/psychological/politi-
cal reality that breeds extensive and serious problems for the disabled
person, far beyond those resulting from the physical impairment it-
self Through this text we are trying to establish a new paradigm, a
paradigm that says that disability is much more than a physical mal-
functioning. This paradigm would imply that we as professionals can
no longer naively perform operations and fit individuals with pros-
theses and expect all to be well. We must, if we are truly to understand
and deliver proper service to the disabled, recognize the problems
they face as a minority, how they fit (or do not fit) into society, and
how they are affected by this. By way of illustration, need for a new
paradigm is implicit in the recent finding that the incidence of decu-
biti (pressure sores) among discharged para- and quadriplegics is re-
lated less to medical factors than to psychological ones. This means
that paraplegics develop decubiti perhaps because they have no
friends, or cannot get a job, or have poor self-esteem, not because of
medical factors.
This text, then, is first for professionals. It is for doctors, nurses,
physical and occupational therapists, social workers, psychologists,
Introduction xvii
and all who are involved with the care and treatment of the disabled.
It is also for students and teachers in the field of disability and
rehabilitation, for those who do research and administer programs —
all who define and in turn are defined by the paradigm, those who
help shape the lives of the disabled and determine whether they will
be first- or second-class citizens.
But this book is not for professionals and students of disability
alone, because obviously they are not the only ones who affect the
lives of the disabled. It is for those who provide substance to the
lives of the disabled after they leave the hospital or rehabilitation
center. It is for the mothers and fathers, spouses, lovers, and friends
among whom the disabled person lives and seeks intimacy, for they
must learn who it is that they are relating to and what internal
struggles are being waged' in this person who does not hear, cannot
walk, or who cannot see. It is for their employers, landlords, at-
torneys, and legislators. It is for their advocates, teachers, and for all
who seek to understand a phenomenon, a movement that is becom-
ing visible and a reality, such as women's groups, the changing struc-
ture of the family, and the energy crunch.
And of course, this book is for the disabled themselves. We seek
to provide a text in which the disabled can find their own experience
validated, articulated, and perhaps analyzed in a way the single indi-
vidual cannot do in isolation. It is an affirmation that "yes, this is
going on. Disabled individuals are discriminated against in this soci-
ety and these are the ways!" It also is an attempt to begin to build a
literature, which seems vitally necessary to the growth and integrity
of any group. The struggle for identity is aided by the expression in
words of common experiences, problems, and concerns. The litera-
ture of a minority says to the members themselves and to others,
"This is who we are. This is what it is like being a member of our
group. These are our feelings and our needs." The literature of the
disabled as a group is just being bom. Of course, biographies, as well
as the occasional autobiography, of famous disabled people have
been around for some time. But the experience of the average dis-
abled person has not been documented, nor has their common
struggle in the midst of a nondisabled society. It is the hope of the
editors that the chapters contributed by the able-bodied authors, as
well as those by the disabled, will be an accurate reflection of the
issues, concerns, and problems facing this minority at this time.
In Disabled People as Second-Class Citizens the editors have
called upon a number of disabled persons, professionals working
with the disabled, and even some specialists outside the field to
share their experience and ideas regarding discrimination against
xviil Introduction
America's newest minority. The result is a collage of sorts — a collec-
tion of thoughts, vignettes, facts, opinions — that will expand the
reader's view of the disabled, changing it from a one-dimensional,
stereotypic vision of the "cripple" to a multi-dimensional and en-
riched understanding of what it means to be a disabled person in this
society.
Because the text is aimed at a wide and varied audience, and
because the issues that it seeks to explore also span a wide range, the
reader will find that the style of writing and level of complexity of
the chapters varies greatly. Some of the chapters, written by profes-
sionals and dealing with somewhat technical issues, are written in an
objective, sometimes scholarly manner. Other chapters, often those
written by disabled individuals about their own experience, are per-
sonal statements, highly charged with emotion and written in a sub-
jective and less formal style. The editors have tried as much as possi-
ble to preserve the authors' individual styles and allow for the vari-
ety of expression necessary to a venture of such breadth as this text.
The text is divided into four parts. The first two parts concen-
trate on describing the situation facing the disabled person and ex-
ploring reasons for the discrimination that is met. The last two parts
offer ideas on how such discrimination might best be met and dealt
with by individuals and by organized groups. The authors of the six
chapters in Part I, "Societal Contributions to Discrimination," iden-
tify general attitudes, values, and prejudices present in society that
breed discrimination against the disabled. These authors take for
granted that such discrimination is no accident but instead grows
naturally from certain attitudes and beliefs that are a part of Western
industrial society. Our attitudes about sexuality, productivity, conform-
ity, and authority, to mention just a few, all contribute to stereotyp-
ing and prejudice. The stigmatization process, first described by
Goffman (1963), and even our economic credo, capitalism, help
transform these prejudicial attitudes into action. Each of the authors
describes a different aspect of these attitudes and their effects upon
the disabled as a group, and together they give the reader a perspec-
tive and a framework for understanding Part II more fully.
In the second part, the authors focus on the mechanics of dis-
crimination. They analyze the individual institutions of our society —
the courts, architecture, transportation systems, employment, the
medical system, and the family — and illustrate how discriminatory
attitudes are actually put into practice. They show how discrimina-
tion has been built into the system, meaning that even if individuals'
attitudes toward the disabled become more accepting, we will still
have to contend with institutions that practice discrimination daily —
Introduction xix
seemingly beyond our control. Even systems that were originally
constructed with the intention oi helping the disabled (e.g., the So-
cial Security system) can in effect harm them, keeping them from
gaining employment and utilizing their talents to the fullest, thereby
retaining their pride and self-esteem.
In the third and fourth parts of the text the reader's attention is
turned to the issue of coping with social, political, and psychological
realities described in Parts I and II. In Part III, "Coping with Physi-
cal Disability," methods of helping the individual cope with disabil-
ity and the effects of discrimination are discussed. Psychological
treatment, when it takes into account the total picture — social, politi-
cal and economic — and does not assume that the disabled individ-
ual's problems are entirely of his or her own making, can be most
helpful. Specifically, the methods being developed by the behavioral
therapists seem to hold the greatest promise for treating the psycho-
logical problems of disabled people without further adding to the
discrimination they already encounter.
In Part IV, "A Call to Action," the authors describe ways in
which disabled individuals can combat discrimination by organizing
and utilizing their own talents. In securing jobs, housing, and their
rights as consumers, the disabled must step out of their old roles as
passive and dependent "patients," and become activists for their
own cause.
If the change in paradigm that the disabled (and the authors and
editors of this text) seek is to come about, it will only be through
active and vocal protest by the disabled themselves, and their insis-
tence that there is more to disability than malfunctioning body parts,
and more to being disabled than meets the eye.
References
Goffman, E. Stigma: Notes on the management of spoiled identity. Engle-
wood Cliffs, N.J.: Prentice-Hall, 1963.
/
Societal Contributions to
Discrimination
As the disabled have grown in numbers and surfaced as a new
minority group, what has also emerged is the awareness that they
are not afforded their full rights as citizens, a situation which has
unfortunately been the case with other minorities. Truly, when one
realizes that a disabled person cannot live anywhere he wants, that
he cannot use most public transportation, that he cannot participate
in many public education programs, and that he can expect to en-
counter difficulty in securing jobs for the sole reason of his disabil-
ity, one realizes that the disabled are indeed second-class citizens.
Disability brings with it many limitations — physical limitations
which can be worked with and worked around, but which limit none-
theless. Over and above these immutable restrictions on mobility,
choices, and opportunities, there are other limitations which stem
from political, economic, and attitudinal sources that are avoidable
and which greatly compound the original problems caused by physi-
cal disability. This part is about the realm of societal attitudes, poli-
cies, and resistance which turn disabilities into handicaps.
The roots of prejudice have been widely discussed in many texts
over the last 40 years. The purpose of this first section is not to
discuss prejudice as a phenomenon, but to explore the origins of
discriminatory attitudes directed toward the disabled. As an emerg-
ing minority, the disabled find they are not being met with open arms
by society and its institutions. Although one could blame bureau-
cratic policies and society's tendency to preserve the status quo (i.e.,
that society and its benefits have been created for the able-bodied),
there are deeply felt personal attitudes which serve to maintain these
institutions and keep the disabled isolated and segregated. Eisen-
berg (Chapter 1) reviews the basic mechanism of prejudice, the stig-
matization of the different or deviant group. He discusses how and
why the disabled are stigmatized and the moral bases for this pro-
cess. Hicks (Chapter 2) describes where we stand at this point in time.
2 Societal Contributions to Discrimination
Competence is not the issue nor is ability when we consider accom-
modating the disabled; society has both the competence and the
ability. The questions now are philosophical, and in exploring them
he examines basic American values of the late twentieth century,
from Social Darwinism to the myth of the melting pot. Griggins
(Chapter 3) focuses on what she describes as contradictory or am-
bivalent feelings that the able-bodied experience toward the disabled
and how these are manifested, especially in the medical community.
Safilios-Rothschild (Chapter 4) discusses the tendency to give sec-
ond-class citizens of any type only one right — the right to work.
Everything else, the right to live, to have friends, to be entertained
and to have fun, the "nonfunctional" activities, are denied or ignored.
Kriegel (Chapter 5) writes from a personal perspective about the dis-
abled experience and the difficulty encountered while establishing a
unique identity in the eyes of others. He offers this as a metaphor for
the modern American male. Finally, Romano (Chapter 6) discusses
another source of prejudice against the disabled: the tendency to see
them as childlike or neuter — not sexual beings.
Although many of the authors make suggestions on ways to
combat these broad prejudicial attitudes, responses to discrimina-
tory attitudes and practices are the subject of Parts III and IV of this
volume.
1 Disability as Stigma
Myron G. Eisenberg
In his book The Painted Bird (1965), Jerzy Kosinski writes of man's
fear of those different from himself, "The Other," in his midst. If
"The Other" is unlike members of society, he is cast out of the group
and destroyed; if he is like them, man intervenes and makes him
appear different so that he can then be alienated from the group and
destroyed. To man, safety lies in similarity; conformity is good and
deviance is evil.
Kosinski's "Other" can easily be extended to include the dis-
abled. In this case, however, one does not have to create a difference
to separate them from the group, for their taint is all too obvious.
Whether the disability is highly visible or invisible, the disabled is
separated from the group by virtue of the nature of his physical
needs. If the disability can be readily observed, such as in blindness,
deafness, stroke, paraplegia, or amputation, it cannot be hidden; if
the disabling condition is invisible, as in the case of diabetes (requir-
ing special diets), cardiac disorders (often necessitating restricted
activity), or disabilities requiring the use of special prostheses such
as colostomy or urostomy bags, it can be covered up only temporarily
and at the cost of much personal anguish and effort.
Many of the handicapped do not realize for some time that they
are the objects of ostracism and stigmatization. Disabled children
reared in an accepting environment may know intrinsically that they
are different but often do not come to an understanding of the signifi-
cance society places on their "differentness" until they begin school;
they must then learn to deal with the ramifications of being visibly
different from others. An adult who acquires a disability later in life
may continue to feel like the same person he was prior to onset of
the disabling condition, but then he comes to learn he is not viewed
as such by society, which now greets him with avoidance, derision,
guilt, or oversolicitousness.
Goffman (1963) suggests there are three different types of
stigma. First, there are bodily stigma — the various physical deformi-
ties. Second, there are blemishes of individual character perceived
4 Societal Contributions to Discrimination
as weak will, domineering or unnatural passions, rigid beliefs, or
dishonesty. Finally, there are tribal stigma of race, nationality, or
religion which are transmitted through lineage and equally contami-
nate all members of a family. He continues by stating that "All of
these forms of stigma have the same sociological features: an individ-
ual possesses a trait which makes him different from normals. He
possesses a stigma, an undesired differentness which separates him
from the rest of society." A stigma, though, in and of itself, is neither
a creditable nor discreditable thing. An attribute that stigmatizes one
person can confirm the usualness of another. For example, applica-
tion for some blue-collar positions may lead the college graduate to
withhold or conceal his educational background from the interviewer
out of fear that he might be thought of as being overqualified for the
job being sought. Other positions, however, may require that candi-
dates have a higher education without which they would be with-
drawn from further consideration.
Once the disabled person becomes aware of his stigmatized la-
bel, his self-perceptions are affected. Even if he rejects the label, his
awareness of the reactions of others will contribute to changing the
social interactions of which he is a part. A fundamental question,
then, which requires our attention is why able-bodied people stigma-
tize the physically disabled instead of accepting them as good, if
unfortunate, members of the same group?
The Origins, Role, and Importance of the Labeling Process
To assure his survival in a hostile environment, man came to recog-
nize patterns in events around him and to identify which reactions to
these events were most useful to him. As man became more adept at
controlling his environment through his abstracting abilities, he was
able to develop a more complex civilization. At the same time, as
threats to his existence continued, he experienced anxiety over them.
One means of reducing this anxiety was to classify circumstances,
including people, and assign them labels. The process served a vari-
ety of purposes for reducing tension: it simplified the environment,
helped identify the problem, and eliminated the need to continually
examine the reality of the situation or explore it in more depth,
making it seem more familiar (Brunner, Goodnow, & Austin, 1967).
Stigmatizing arises as a defense against the anxiety about
whether one is responding "correctly" to an unfamiliar situation. It is
easy to stigmatize — to assign a label denoting any variance from the
group norms, thereby artificially assigning it to a category that does
Disability as Stigma 5
have a recognizable behavioral/emotional response. To accomplish
this, an uncommon characteristic is chosen as the most significant
feature. This deviant characteristic becomes the focus of attention,
and most reactions can then be phrased in terms of that single fea-
ture. In structural/functional terms, this allows the clearer identifica-
tion of those who do not possess this characteristic and those who do,
making those who do not feel safer and reinforcing their sense of
group identity (Erikson, 1962).
The disabled, then, serve a useful function in society, making
"normal" persons feel healthier, brighter, more competent, and se-
cure. Because some disabled persons exact a cost from society, either
because of their inability to be self-sufficient or because they are
prevented from becoming so as the result of compensation legisla-
tion, they are viewed as bad or inferior in some way and hence,
deserving of their fate — either directly or as a punishment exacted on
someone close to them.
Biblical Contributions to the Stigmatization Process
Just as the Inquisition supplied the stigma theory of witchcraft and
psychiatry provided the stigma theory of mental illness, the Bible has
in part contributed the moral foundation on which various discrimina-
tory practices have been exercised against those with physical disabil-
ity and illness. By associating sin and moral transgression with the
resultant "just retribution" of disability and illness, our society has
found an apparent justification for stigmatizing the disabled.
There are numerous biblical references associating sin with
disability. In the Old Testament, for instance, one reads that if God's
commandments are transgressed, he will inflict upon them "blind-
ness, the boils of Egypt with ulcers and scurvy, and the itch from
which they cannot be healed" (Deuteronomy, 28:20). In the New
Testament similar sentiments are expressed. Consider, for example,
the statment attributed to Jesus who, upon healing a man, said, "Be-
hold, thou are made whole. Sin no more lest a worse thing come unto
thee" (John, 5:13). Not only is the concept of individual punishment
for sins and immoral behavior found in the Bible, but the concept of
the sins of the father being visited upon his children is also firmly
rooted in biblical literature.
The concept that disability and illness are divine retribution for
sins or transgression against God's laws is embraced by many in our
society. Consider, for example, the experience of Marie Killilea
(1952), the mother of a cerebral palsied child, who recounts her ex-
6 Societal Contributions to Discrimination
perience of seeking lodging at a woman's home. When told that the
child had cerebral palsy, "the v/oman's face grew livid and she
jumped to her feet. 'Get out of my house' she shouted. 'Only bad,
dirty people would have a child like that.' " Further, Kramm (1963),
investigating the extent to which this philosophy was held by par-
ents of handicapped children, found that 12 percent of parents of
mongoloid children studied saw retardation as resulting from an act
of God. Consider this in light of a Gallup poll (1978) which indicates
38 percent of the American people reported that they believed the
Bible is the actual word of God and is to be taken literally, 45 per-
cent believed that the Bible is the inspired word of God, and only 13
percent believed that the Bible is a book of fables and legends.
A study conducted by Weinberg and Sebian (1980) shows that
the able-bodied feel a moral obligation to help the disabled. The
authors conclude that this finding tends to lend support to the con-
ception that the tradition of giving alms to the disabled advocated in
biblical literature has led to a patronizing rather than an accepting
attitude toward the disabled. Since religion as a force in American
life is currently undergoing a period of growth, these findings are
particularly meaningful in understanding the extent to which biblical
beliefs have influenced our society's moral and philosophical expla-
nations of and justification for disability.
Societal Reactions to the Disabled
The attitudes "normals" have toward a person with a stigma are well
documented (e.g., Safilios-Rothschild, 1977). In his definitive work
on this subject, Goffman (1963) describes the person with a stigma as
someone thought of as being not quite human. On this assumption
we practice a variety of discriminations. We construct an ideology to
explain the disabled's inferiority; we use stigmatic terms such as
"cripple," "moron," and "gimp" in our daily language. We assign a
wide range of imperfections to them based on the original one and
view them through the lens of the deviant characteristic rather than
as a holistic collection of numerous attributes with various degrees of
importance at various times and under various conditions (Becker,
1963). At the same time, we often see them as possessing attributes,
often of a supernatural nature, such as a "sixth sense" (Goffman,
1963).
For some, there may be a hesitancy about touching or steering the
blind, while for others, the perceived failure to see may be generalized
Disability as Stigma 7
into a gestalt of disability so that the individual shouts at the blind as if
they were deaf or attempts to lift them as if they were crippled. Those
confronting the blind may have a whole range of belief that is anchored
in the stereotype. For instance, they may think they are subject to
unique judgment, assuming the blinded individual draws on special
channels of information unavailable to others. (Gowan, 1957, p. 198)
When the disabled person responds defensively to his situation, we
tend to perceive this response as a direct expression of his defect.
We can then justify the manner in which we treat him as retribution
for something he, his parents, or his tribe has done.
Buying into the Stigmatization Process
What is central in our understanding of the process of stigmatization
is that the stigmatized individual tends to hold the same beliefs
about self-identity as does the rest of society. The disabled person
perceives that although others may claim every human being should
be considered worthwhile and equal, in fact they neither accept him,
nor are they ready to make contact with him on "equal grounds." At
the same time, the disabled individual incorporates society's stan-
dards of what "normal" is and, if only for a moment, agrees that he
does, indeed, fall short of what he really ought to be. Shame is often
experienced as the individual comes to perceive one of his own
attributes as being a defiling thing, one he cannot accept as a part of
himself and from which he cannot escape. Consider, for example, the
confusion and panic experienced by the disabled person upon first
examination of his mirrored image following disability.
I didn't want anyone ... to know how I felt when I saw myself for the
first time. But there was no noise, no outcry; I didn't scream with rage
when I saw myself I just felt numb. That person in the mirror couldn't
be me. I felt inside like a healthy, ordinary, lucky person — oh, not like
the one in the mirror! Yet when I turned my face to the mirror there
were my own eyes looking back, hot with shame . . . when I did not cry
or make any sound, it became impossible that I should speak of it to
anyone, and the confusion and the panic of my discovery were locked
inside me then and there, to be faced alone, for a very long time to
come. (Hathaway, 1943, p. 157)
Over and over I forgot what I had seen in the mirror. It could not
penetrate into the interior of my mind and become an integral part of
me. I felt as if it had nothing to do with me; it was only a disguise. But it
was not the kind of disguise which is put on voluntarily by the person
8 Societal Contributions to Discrimination
who wears it, and which is intended to confuse other people as to one's
identity. My disguise had been put on me without my consent or
knowledge like the ones in fairy tales, and it was I myself who was
confused by it, as to my own identity. I looked in the mirror, and was
horror-struck because I did not recognize myself. . . . Eveiy one of those
encounters was like a blow on the head. They left me dazed and dumb
and senseless every time, until slowly and stubbornly my robust persis-
tent illusion of well-being and of personal beauty spread all through me
again, and I forgot the irrelevant reality and was all unprepared and
vulnerable again. (Hathaway, 1943, pp. 46-47)
The stigmatized person can and often does use the stigma for
secondary gains, as an excuse for not being able to compete. How-
ever, when what is perceived as being the objective basis of his
failings is corrected, problems often surface:
For years the scar, harelip or misshapen nose has been looked on
as a handicap, and its importance in the social and emotional adjust-
ment is unconsciously all embracing. It is the "hook" on which the
patient has hung all inadequacies, all dissatisfactions, all procrastina-
tions, and all unpleasant duties of social life, and he has come to de-
pend on it not only as a reasonable escape from competition but as a
protection from social responsibility.
When one removes this factor by surgical repair, the patient is
cast adrift from the more or less acceptable emotional protection it has
offered and soon he finds, to his surprise and discomfort, that life is
not all smooth sailing even for those with unblemished, "ordinary"
faces. He is unprepared to cope with this situation without the support
of a "handicap," and he may turn to the less simple, but similar,
protection of the behavior patterns of neurasthenia, hysterical conver-
sion, hypochondriasis or the acute anxiety states. (Baker & Smith,
1939, p. 303)
The disabled individual may also view the disability as a bless-
ing in disguise, as a trial through which he has suffered and gained a
new understanding of life (Vash, 1978). A mother permanently dis-
abled by polio writes:
But now, far away from the hospital experience, I can evaluate what
I have learned. For it wasn't only suffering: it was also learning through
suffering. I know my awareness of people has deepened and increased,
that those who are close to me can count on me to turn all my mind and
heart and attention to their problems. I could not have learned that dash-
ing all over a tennis court. (Henrich & Kriegel, 1961, p. 19)
Disability as Stigma 9
When disabled and able-bodied meet, an uncomfortable situa-
tion often results for both. One response observed among the dis-
abled, that of defensive cowering, can be best understood through
the following example:
When ... I began to walk out alone in the streets of our town ... I
found then that wherever I had to pass three or four children together
on the sidewalk, if I happened to be alone, they would shout at me. . . .
Sometimes they even ran after me, shouting and jeering. This was
something I didn't know haw to face, and it seemed as if I couldn't bear
it
For a while those encounters in the street filled me with a cold
dread of all unknown children. . . .
One day I suddenly realized that I had become so self-conscious
and afraid of all strange children that, like animals, they knew I was
afraid, so that even the mildest and most amiable of them were auto-
matically prompted to derision by my own shrinking and dread. (Hath-
away, 1943, pp. 155-157)
Just as the disabled may respond to interactions with the able-
bodied population with fear, hostility, bravado, or a variety of other
kinds of emotional responses, the able-bodied, too, often feel uncom-
fortable in these interactions:
Whether the handicap is overtly and tactlessly responded to as
such, or as is more commonly the case, no explicit reference is made to
it, the underlying condition of heightened, narrowed, awareness causes
the interaction to be articulated too exclusively in terms of it. This, as
my informants described it, is usually accompanied by one or more of
the familiar signs of discomfort and stickiness: the guarded references,
the common everyday words suddenly made taboo, the fixed stare else-
where, the artificial levity, the compulsive loquaciousness, the awkward
solemnity. (Davis, 1961, p. 123)
Key Ingredients to Effect Change
Disabled people have in part bought into our society's value system
of pronouncing everything young, beautiful, healthy, and vigorous as
being "good" and everything at variance to this norm as being
"bad." They are, therefore, partially responsible for the current situa-
tion in which they find themselves. There are, however, a number of
things they can do to help remediate the problem. Certainly they can
continue to agitate for additional enforceable legal proscriptions to
10 Societal Contributions to Discrimination
combat the discrimination they face. Although the RehabiHtation Act
of 1973 has provided a foundation on which meaningful progress can
be made in the fight for equality, there has been a marked reluctance
on the part of both individuals and city, county, state, and, indeed,
federal legislators and bureaucrats to live up to the intended spirit of
the law. It is not until the disabled insist on strict enforcement of
these legal enactments and direct attention to its offenders that the
act will, in fact, produce change. It is through civil suits such as that
initiated by the Eastern Chapter of the Paralyzed Veterans of Amer-
ica against New York City's Transit Authority, the Manhattan and
Bronx Surface Transportation Authority, and the Comptrollers of
both the City and State of New York that "justice for all" can be
assured (Moakley, 1979). Although this suit focuses on equal access
to New York's public transportation system, other legal actions de-
manding access to educational, vocational, and recreational environ-
ments must be and are being instituted.
Another way the disabled can achieve equality is through in-
creased contact with the able-bodied and by providing them with
information about disability. A large body of psychological literature
(e.g., Anthony, 1972; Gaier, Linkowski, & Jacques, 1968; Semmel &
Dickson, 1966; Yuker, Block, & Young, 1966) suggests that attitudi-
nal change can occur with increased contact with the disabled and
information about disability. For example, an unpublished study au-
thored by Weinberg and Sebian (1980) indicates that people who
show the strongest agreement with biblical beliefs regarding disabil-
ity come from those who have had the least social interaction with
them. This finding holds true for both the able-bodied and the dis-
abled. Thus differences in acceptance of these biblical sentiments is
related to how much contact the able-bodied or disabled person has
had with disabled people, and his acceptance is not related to
whether or not the person is himself disabled. Possibly with in-
creased contact, an informational campaign, and the maintenance of
a more highly visible presence, some of the prejudicial feelings
many able-bodied members of our society harbor toward the dis-
abled could be ameliorated, as the able-bodied and disabled meet in
the marketplace, in the school, in the workplace, and in social-
recreational environments. The process through which progress can
be made is the subject of this text. Disabled people can, however,
accelerate the process by organizing, banding together, and speaking
with one voice, rather than continuing to act as special-interest
groups interested in effecting only those changes which directly ben-
efit their own highly specialized needs.
Of at least equal importance to increasing the degree of social
Disability as Stigma 11
intercourse between the disabled and able-bodied and to seeking
legal remedies to deal with discrimination is that the disabled stop
encouraging and participating in their own stigmatization. This es-
sential step along the road to full and real equality must be taken by
the disabled themselves. They must establish a healthy self-image.
They must come to believe that they can indeed contribute to society
as worthwhile, socially competent individuals. No individual can
avoid conflicts between the needs and demands of reality and oppos-
ing needs within himself. Nor would such a state be desirable, since
a reasonable degree of conflict provides the impetus for further de-
velopment (Eisenberg, 1977). The disabled, however, must be able
to integrate the disabling condition into a healthy self-concept. They
must learn how to tolerate and deal effectively with conflict and
frustration. They must learn to be as independent as possible, de-
velop the capacity for farsighted planning, and be motivated to re-
ceive satisfaction from fulfilling the role they play in society. The
disabled must develop the skills necessary for vocational self-
sufficiency and learn to compete and to co-operate; to assert them-
selves when necessary and to gain satisfaction from being helpful to
others. They must acquire the ability to tolerate anxiety and to re-
main flexible, trying new responses when old ones fail. In essence,
the disabled need to develop a realistic understanding of them-
selves, of their capabilities and limitations, needs, fears, and sources
of conflict. It is only then, after the disabled have come to believe in
their own authenticity and value as human beings, that the first ma-
jor battle against the discrimination they face can be thought of as
having been won.
If I had to choose one group of experiences that finally convinced
me of the importance of this problem (of self-image) and that I had to
fight my own battles of identification, it would be the incidents that
made me realize with my heart that cripples could be identified with
characteristics other than their physical handicap. I managed to see that
cripples could be comely, charming, ugly, lovely, stupid, brilliant — just
like all other people, and I discovered that I was able to hate or love a
cripple in spite of his handicap. (Carling, 1962, p. 21)
References and Bibliography
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12 Societal Contributions to Discrimination
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Press, 1963.
Brunner, J., Goodnow, J., & Austin, G. A study of thinking. New York:
Wiley, 1967.
Carling, E. And yet we are human. London: Chatto & Windus, 1962.
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307-314.
Gaier, E. L., Linkowski, D. G., & Jacques, M. E. Contact as a variable in the
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wood Cliffs, N.J.: Prentice-Hall, 1963.
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2 Should Every Bus
Kneel?
John S. Hicks
To some of us working in the field of exceptional children and
adults, November 18, 1979 will be remembered as a significant day.
Public Law 94-142 had been signed into law nearly four years earlier
and was beginning to produce significant changes in the way the
schools in our country treat handicapped children. Another major
law, the Rehabilitation Act of 1973, seemed destined to make as
much impact on the lives of handicapped adults by forcing public
agencies to provide access for the handicapped, and by suggesting
many stipulations about the "civil rights" of the handicapped.
What happened on November 18, 1979 was the institutionaliza-
tion of a backlash against the disabled which many had feared would
come forth. It was becoming obvious that providing for the needs of
the handicapped was going to be expensive. Unfortunately, the re-
cent federal legislation was passed in a period of economic prob-
lems. Inflation coupled with the oil shortage and world unrest sug-
gested that the American economy did not have at its disposal excess
funds to pay for the many provisos of that new legislation. Indeed,
the handicapped seemed to be crying out for services at a time when
national, local, and personal financial resources were sorely strained
to meet the ever-increasing cost of living.
And so, the "Eastern liberal press" sounded the first trumpet.
The New York Times (which we are led to believe has at least na-
tional circulation) ran an editorial on Sunday, March 18, 1979 that
called for temperance on the part of the handicapped; it cited recent
gains and bemoaned the cost to the public of full implementation of
these laws. The title of the editorial was "Must Every Bus Kneel to
the Disabled?" It is important to reproduce it in its entirety, so that
future claims of misunderstanding or misrepresentation are kept at a
minimum.
Do the 30 million Americans afflicted with physical or mental handi-
caps have a right of access, no matter what the cost, to all publicly
13
14 Societal Contributions to Discrimination
sponsored activities? That is now a central question because the price
of such access for the disabled promises to become very great.
The handicapped have made vigorous and successful claims on
American society in recent years. New laws require schools and col-
leges to integrate them as much as possible into regular programs. Pub-
lic buildings must offer easy access. Employers are required to take
reasonable steps to allow the disabled to v/ork. One particularly sweep-
ing statute says that no person may be excluded on account of a handi-
cap from any activity that receives federal money.
The fairness and social value of much of this legislation should be
obvious. But a vocal segment of the handicapped now hails the broader
language, patterned after the 1964 Civil Rights Act, as a declaration of
analogous rights to participate in all aspects of American life. These
groups want to have removed every barrier that keeps the handicapped
somehow apart, at public expense. Plainly, this law needs to be recon-
sidered with a better understanding of how it will be interpreted and
what it will cost.
The costs of rendering the handicapped "equal" have threatened
to become especially acute in publicly financed transportation. New
rules issued by the Transportation Department require lifts for wheel-
chairs on buses, room for wheelchairs on railway cars that now cannot
handle them, and elevators in many subway and rail stations. Impover-
ished cities like New York say they cannot afford all this.
The Congressional Budget Office has calculated the nationwide
cost at $6.8 billion over the next 30 years. The congressional budgeteers
also figure that the modifications would serve no more than 7 percent of
the severely disabled, at an estimated cost of $38 per ride. Door-to-door
taxi service, by contrast, could serve 26 percent of the same group at a
cost possibly less than $8 a ride. That is still expensive, but it drama-
tizes the problem and even the potential benefit to the handicapped of
sensibly weighing alternatives.
Going to incredible expense to remodel trains and buses would be
justifiable only if the handicapped, as some insist, have a fundamental
legal, even constitutional right, to use public facilities without diffi-
culty. If they are to be classified as a minority that must be compensated
for the condition that makes them different, then even a separate-but-
better transportation network could be said to violate their rights.
Where such a right might be found in the Constitution, or even in logic,
is not immediately apparent.
How far would such a right extend? All street signs in Braille? Sign
language on every television show? A counselor-guide for each illiter-
ate? Would severe psychosis be a handicap requiring not merely assis-
tance or care but an equalizing remedy?
These objections are too easily misunderstood. Integrating the hand-
icapped into everyday life is a valuable social goal. Vast numbers of
them are on welfare when they could be doing productive work — if the
Should Every Bus Kneel? 15
barriers to their mobility and opportunities were lowered. The nation is,
belatedly, moving in the right direction. For reasons of humanity and
sound social policy, it should move faster still. But that hardly justifies
making every bus kneel to pick up a few passengers. The handicapped
have a right to respect and to reasonable assistance, not to an unlimited
claim on public funds in the name of dubious principle. (© 1979 by The
New York Times Company. Reprinted by permission.)
Several points in that editorial are critical to the understanding
of present discrimination against the handicapped and are also en-
lightening in describing social policy in this area. To its credit, The
New York Times does at least admit that the general questions raised
apply to a rather substantial group of Americans, 30 million people.
That is a sizable minority, even in our 200-million-plus society. The
Times also alludes to fundamental questions being raised by the
1964 Civil Rights Act, that is, that discrimination is contrary to the
civil rights of the handicapped just as it was to the blacks in our
country.
The editorial makes reference to the Congressional Budget Of-
fice and its calculations that it would cost $6.8 billion over the next
30 years to make certain modifications in the area of transportation.
When placed in the perspective of federal expenditures for defense,
$125 billion per year, the $240 million per year cost of such modifi-
cations seems minuscle! The Times goes on, citing that in many
cases paying for taxi rides could be cheaper and serve a larger pro-
portion of those disabled workers. As in hundreds of cases prior to
this one, the ultimate justification is economic, to get the handi-
capped off welfare and gainfully employed. Basically, this misses the
central issues, that public facilities should be accessible because the
handicapped don't want to be chauffered around — they want to be
treated as other citizens are treated. The editorial suggests replacing
one stigma with another stigma, which is a poor short-term or long-
range solution.
The statement that the needs of the disabled "... hardly jus-
tifty] making every bus kneel to pick up a few new passengers"
represents an attempt to slow down, to limit, to re-think. The article
makes reference to "impoverished cities like New York." When na-
tional papers like the Tim,es print editorials of such a negative na-
ture, one begins to wonder how widespread and pervasive the pov-
erty has become.
16 Societal Contributions to Discrinnination
Value Systems and Social Policy
It is the premise of this chapter that the fields of special education
and rehabilitation are at a point where technical competence alone is
not sufficient. Whatever the degree of professional competence, the
public is asking other kinds of questions, and the questions are be-
coming central to the progress of the handicapped in our society.
The issues raised in The New York Times editorial are philosoph-
ical— about the responsibility of the general society to accommodate
to the needs of individuals. Questions are raised as to the constitu-
tionality of such requests on the part of the handicapped. Is total
access by any citizen a guaranteed right in our society?
Such questions raise the specter of more fundamental problems.
Technical competence would not help a disabled worker argue his or
her case in front of the editorial board of The New York Times. I
would assert that several other factors, such as value systems and
attitudes, are more relevant to any future progress on the part of the
disabled. The remaining parts of this chapter attempt to bring into
focus areas which are related to society's attitudes and social policy
as they will affect the position of the disabled in the future.
Let me review several important books which I feel have at-
tempted to understand some of the American society's attitudes and
values. The first is a book by Hofstadter (1955) which attempts to
document the impact of Darwinian theory on social structures and
thought in our country. His basic premise was that many of the tenets
of Darwinism as a scientific theory of evolution in nature have been
applied to the evolution of human societies. In Social Darwinism in
American Thought he outlines the ideas that have been brought over
from the world of science and applied to social progress.
Darwinism was used to buttress the conservative outlook in two
ways. The most popular catchwords of Darwinism, "struggle for exis-
tence" and "survival of the fittest," when applied to the life of man in
society, suggested that nature would provide that the best competitors
in a competitive situation would win, and that this process would lead
to continuing improvement. In itself this was not a new idea, as econo-
mists could have pointed out, but it did give the force of a natural law to
the idea of competitive struggle. Secondly, the idea of development
over aeons brought new force to another familiar idea in conservative
political theory, the conception that all sound development must be
slow and unhurried. Society could be envisaged as an organism (or as
an entity something like an organism), which could change only at the
glacial pace at which new species are produced in nature. . . .
But in either case the conclusions to which Darwinism was at first
Should Every Bus Kneel? 17
put were conservative conclusions. They suggested that all attempts to
reform social processes were efforts to remedy the irremediable, that
they interfered with the wisdom of nature, that they could lead only to
degeneration. (Hofstadter, 1955, pp. 6-7)
The implications for the field of the handicapped are clear. So-
cial structures should follow natural laws, and the strongest will sur-
vive. The second corollary is tfiat, as in science, social change is very
slow and should not be hurried. It is ironic that Darwinism, from the
scientific world, should so often be used as a justification for slow
and gradual change, especially in this modem world, when scientific
change is so rapid.
A second major historical work is Erich Fromm's Escape from
Freedom (1965). Fromm approaches his analysis from the point of
view of a psychoanalyst attempting to interpret certain historical de-
velopments. His thesis is that modem man is faced with the problem
of technological freedom. For the first time in history, man is freed
from the eternal struggle for survival, thanks to the developments of
modern industrial technology. Faced with this development, modem
man is faced with a psychological dilemma he has not had to face
before — that of freedom.
After centuries of struggles, man succeeded in building an undreamed-
of-wealth of material goods; he built democratic societies in parts of the
world, and recently was victorious in defending himself against new
totalitarian schemes; yet, as the analysis in Escape from Freedom at-
tempts to show, modern man still is anxious and tempted to surrender
his freedom to dictators of all kinds, or to lose it by transforming himself
into a small cog in the machine, well fed, and well clothed, yet not a
free man but an automaton. (Fromm, 1965, p. xii)
There can be no doubt that in this last quarter of a century the
reasons for man's fear of freedom, for his anxiety and willingness to
become an automaton, have not only continued but have greatly
increased. . . .
Aside from the nuclear revolution, the cybernetic revolution has
developed more rapidly than many could have foreseen twenty-five-
years ago. We are entering the second industrial revolution in which not
only human physical energy — man's hands and arms as it were — but
also his brain and his nervous reactions are being replaced by ma-
chines. (Fromm, 1965, pp. xii-xiii)
Fromm's conclusions about the way man will be able to deal
with the psychological problem of freedom focus on man's willing-
ness to "escape," by becoming a part of a large corporation, a part of
18 Societal Contributions to Discrimination
a community, an in-group, a clique which provides an identity.
Fromm asserts that individuality produces loneliness and that often
freedom is associated with the anxiety of being an individual.
Man's brain lives in the twentieth century; the heart of most men
lives still in the Stone Age. The majority of men have not yet acquired
the maturity to be independent, to be rational, to be objective. They
need myths and idols to endure the fact that man is all by himself, that
there is no authority which gives meaning to life except man himself.
Man represses the irrational passions of destructiveness, hate, envy,
revenge; he worships power, money, the sovereign state, the nation;
while he pays lip service to the teachings of the great spiritual leaders
of the human race, those of Buddha, the prophets, Socrates, Jesus, Mo-
hammed— he has transformed these teachings into a jungle of supersti-
tion and idol-worship. How can mankind save itself from destroying
itself by this discrepancy between intellectual-technical over-maturity
and emotional backwardness? (Fromm, 1965, pp. xiv-xv)
If, indeed, Fromm is right, a second insight is afforded us. Mod-
em man feels overwhelmed with the immensity of the world and by
the complexity of our civilization. Man's response is to join, to give
up his individuality for membership in a group. By this he finds
identity and stature.
This particular mechanism is the solution that the majority of nor-
mal individuals find in modern society. To put it briefly, the individual
ceases to be himself; he adopts entirely the kind of personality offered
to him by cultural patterns; and he therefore becomes exactly as all
others are and as they expect him to be. . . . But the price he pays,
however, is high; it is the loss of his self (Fromm, 1965, pp. 208-209)
Thus, so far, we seem to have a modem society which tends to
change slowly in terms of social developments. At the same time, we
have individual members who seek identity and individuality, but
who must often do so at the price of primary relationships such as the
family. Fromm's conclusion is that, psychologically, most persons
cannot pay the price, and so they give up parts of their individuality
to fit into groups — whether vocational or social.
The disabled in our society are caught in both these binds. They
need, wish, and expect some rather quick social changes. It is impos-
sible for them to wait the 100 years the blacks waited from the end of
the Civil War to the 1954 Supreme Court decision. At the same time,
psychologically, the disabled feel different enough, and they usually
want to establish linkages, to establish relationships with groups of
Should Every Bus Kneel? 19
people with similar interests. Yet this is often so hard to do, for a
multitude of reasons. Perhaps if the buses would kneel they would
have a better chance at establishing and maintaining healthy rela-
tionships both vocationally and personally.
Lest the reader be given the impression that more recent authors
are not writing on these topics, let me introduce a work published in
1970 by Charles A. Reich, The Greening of America. Reich speaks of
a revolution he sees coming in our society. It is a quiet revolution of
social ideas usually associated with the younger generation and their
values. He speaks of a value system that is different from the two
major value systems he identifies as totally integrated into our coun-
try's ethos. These three systems he labels Consciousness I, II, and
III:
Consciousness I is the traditional outlook of the American farmer, small
businessman, and worker who is trying to get ahead. Consciousness II
represents the values of an organizational society. Consciousness III is
the new generation. . . .
The great question of these times is how to live in and with a
technological society; what mind and what way of life can preserve
man's humanity and his very existence against the domination of the
forces he has created. This question is at the root of the American crisis,
beneath all the immediate issues of lawlessness, poverty, meaningless-
ness, and war. It is this question to which America's new generation is
beginning to discover an answer, an answer based on a renewal of life
that carries the hope of restoring us to our sources and ourselves.
(Reich, 1970, pp. 16-17)
Consciousness I represents the Horatio Alger myth in America;
that is, self-sufficiency, hard work, and individual sacrifice will ulti-
mately win out. The independent businessman, the professional
working alone can and will become successful on the basis of his or
her individual tenacity and courage. Consciousness II represents
much of what Fromm wrote about; it is the success of the individual
who joins an organization. The citizen becomes a needed worker in a
large organization, never standing on his own but sharing in the
success of the larger unit. The worker also receives the security of
being a part of a social unit, such as a union, while paying the price
of conformity to the group. Reich asserts that Consciousness I was
the dominant life-style in the early stages of our society, but that
since the turn of the century Consciousness II has prevailed.
Just as Consciousness I centers on the fiction of the American Adam, the
competitive struggle, and the triumph of the virtuous and strong Individ-
20 Societal Contributions to Discrimination
ual, so Consciousness II rests on the fiction of logic and machinery; what
it considers unreal is nature and subjective man. Consciousness II be-
lieves more in the automobile than in walking, more in the decision of an
institution than in the feelings of an individual, more in a distant but
rational goal than in the immediate present. (Reich, 1970, p. 67)
Reich, however, insists that the revolution which is coming re-
lates to a third view of social values.
Consciousness III rejects the whole concept of excellence' and
comparative merit that is so central to Consciousness II. Ill refuses to
evaluate people by general standards, it refuses to classify people, or
analyze them. Each person has his own individuality, not to be com-
pared to that of anyone else. Someone may be a brilliant thinker, but he
is not "better" at thinking than anyone else, he simply possesses his
own excellence. . . . Everyone is entitled to pride in himself, and no one
should act in a way that is servile, or feel inferior, or allow himself to be
treated as if he were inferior.
It is upon these premises that the Consciousness III idea of com-
munity and of personal relationships rests. In place of the world seen as
a jungle, with every man for himself (Consciousness I) or the world
seen as a meritocracy leading to a great corporate hierarchy of rigidly
drawn relations and maneuvers for position (Consciousness II), the
world is a community. People all belong to the same family, whether
they have met each other or not. . . .
In personal relations, the keynote is honesty, and the absence of
socially imposed duty. To be dishonest in love, to "use" another person,
is a major crime. (Reich, 1970, pp. 226-227)
Clearly, Reich asserts that there is in our younger generation of
adults an alternate to the two other, more traditional value systems
found in our society. To this writer, Consciousness III represents an
existential humanism in which the individual has supreme value and
in which respect for others transcends the narcissism of individual-
ity. Reich suggests that it will produce a third major value system.
Perhaps it will balance off the ideas of slow and gradual change
coupled with superiority found in Social Darwinism. Perhaps it will
provide the identity that Fromm fears people lose when they give up
their freedom to become a part of Consciousness II.
Several points can be made relative to the lives of the handi-
capped. In terms of Social Darwinism, the handicapped are placed in
a no-win situation. They will never be judged to be part of the supe-
rior part of our society. They will never be a part of evolution toward
excellence. Darwinists would consider them mutants, proof that na-
ture is not perfect. The handicapped will never be, for the major
Should Every Bus Kneel? 21
part, members of the meritocracy of our modern world. We have
accepted the idea of a person's value being tied to merit so fully that
it has become an unconscious phenomenon.
It is hard to speak of the loss of individuality of handicapped
persons; their uniqueness tends to reinforce their individuality. Very
often social groups seem to have little need to reach out and include
them as members. Part of the movement of mainstreaming seems to
be a desire to be included, but hopefully not for the same reasons or
in the same way as Fromm's men reach out to social groups as a
result of a fear of freedom.
Reich seems to be saying that although there are some tradi-
tional groups in our society with more-or-less traditional value sys-
tems that fit into groups, there is a third value system growing in our
culture. This new value system speaks of the innate worth of each
individual. It speaks of a value system that is not tied to productivity
at work, not tied to status, and not tied to upward mobility. Perhaps
the disabled will have to fight for many years the battles of access to
public transportation and access to productive jobs. It is reassuring to
know that a value system may be emerging in our culture that says
that individuals have value apart from and perhaps in spite of a lack
of productivity.
Prejudice and Aggression
In the previous part I tried to outline the theme that some of the
major problems the handicapped face in modern society relate to
"value systems." Social Darwinism warns us that people's values
change slowly. Fromm and Reich, from different perspectives, warn
about man's acceptance of prevailing value systems. The handi-
capped seldom share in the rewards of these value systems. Fromm
asserts that man loses his identity when joining larger social units.
Reich describes two major value systems related to man's work and
suggests that there is a saner set of values which are just emerging in
our society.
The second major theme I would like to present involves two
other major forces which impact on all disabled people — aggression
and prejudice. Many would argue that aggression and prejudice are
just two separate manifestations of the same human problems.
We seem to be experiencing a tremendous display of aggression
or destructiveness in recent years. The American social dreams of
peace and prosperity are not even talked about anymore. Within the
past 20 years we have witnessed assassinations of public figures in
22 Societal Contributions to Discrimination
our country. We have witnessed open riots between dissidents
(mostly the young) and the establishment over Vietnam. We have
witnessed various racial hostilities. We are observing innumerable
"brush-fire wars" around the world, and the interminable strife in
Ireland. Although we hope the threat of nuclear holocaust can be
averted, it is impossible not to define these times as troubled.
Fear of personal attacks has modified many lifestyles in cities so
that often streets in many parts are empty after dark. Should power
failure occur, general looting destroys property indiscriminately — not
just the property of the wealthy outsider but of the neighborhood
resident as well. In recent months there has been a resurgence of
open activity by the Ku Klux Klan. Destructiveness seems so com-
monplace that it no longer shocks the public. In a number of cases,
violence and destructiveness seem tied to prejudice of one group
against another. I would like to suggest two books which attempt to
provide some understanding of these forces: Gordon Allport's The
Nature of Prejudice (1958) and Erich Fromm's The Anatomy of Hu-
man Destructiveness (1973). My meaning should be clear — the handi-
capped must learn to deal with prejudice and aggression in their
personal lives.
In his description of the nature of prejudice, Allport makes sev-
eral important points. Primary is his assumption that prejudice is a
result of many factors and cannot be explained away by one theory.
Allport suggests that one of these roots of prejudice lies in man's
tendency to establish and maintain groups. These groups then
quickly become in-groups and out-groups, and close ties and alle-
giance naturally follow.
Psychologically the crux of the matter is that the familiar provides
the indispensable basis of our existence. Since existence is good, its
accompanying groundwork seems good and desirable. A child's parents,
neighborhood, region, nation are given to him — so too his religion, race,
and social traditions. To him all these affiliations are taken for granted.
Since he is part of them, and they are part of him, they are good. . . .
(Allport, 1958, p. 28)
We are now in a position to understand and appreciate a major
theory of prejudice. It holds that all groups (whether in-groups or refer-
ence groups) develop a way of living with characteristic codes and be-
liefs, standards and "enemies" to suit their own adaptive needs. The
theory holds also that both gross and subtle pressures keep every indi-
vidual member in line. The in-group's preferences must be his prefer-
ences, its enemies his enemies. (Allport, 1958, p. 38)
The issue for our field is just this: as individuals, the handi-
capped have few valued groups of which they can be members.
Should Every Bus Kneel? 23
More often they and their families face subtle pressures of non-
acceptance — not strong drives for inclusion. Allport (1958) also as-
serts that stereotypes are typically attached to groups. He defines
stereotypes as exaggerated beliefs associated with a category, and
the stereotype serves to justify our conduct toward that group. Thus
all handicapped people tend to be painted with the same brush,
whatever their real abilities. People bring to individual disabled
persons their own stereotype of a mythical group of all handicapped
persons.
Also important is Allport's discussion of the "American di-
lemma" (Allport, 1958). He asserts, as others before him have, that
we have a central conflict between our belief in the American dream
of equality of opportunity and the very real awareness of our citizens
that prejudices are very strong. We live in a state of collective guilt.
We tend to approach people we feel prejudiced against with a high
degree of uneasiness. Often the handicapped are aware of this basic
ambivalence of others toward them.
Prejudice and aggression have, unfortunately, often gone hand
in hand. It seems easier to be aggressive toward others who are the
objects of prejudice. Erich Fromm's 1973 book on human destruc-
tiveness describes in great detail the destructiveness of Hitler and
the Nazi drive to conquer the world. He attempts to give some rea-
sons behind the incredible degree of cruelty which one group of
men were able to inflict on another group. He also speaks of malig-
nant aggression which is destructive and cruel, and which is usually
not a part of the animal world. This unique form of destructiveness
seems to have driven man to extreme lengths as civilization has
progressed in its technology.
We must distinguish in man two entirely different kinds of aggres-
sion. The first, which he shares with all animals, is a phylogenetically
programmed impulse to attack (or to flee) when vital interests are
threatened. This defensive, "benign" aggression is in the service of the
survival of the individual and the species, is biologically adaptive and
ceases when the threat has ceased to exist. The other type, "malignant"
aggression, i.e. destructiveness and cruelty, is specific to the human
species and virtually absent in most mammals. . . . (Fromm, 1973, p. 4)
Malignant aggression, let us remember, is specifically human and
not derived from animal instinct. It does not serve the physiology sur-
vival of man, yet it is an important part of his mental functioning. It is
one of the passions that are dominant and powerful in some individuals
and cultures, although not in others. (Fromm, 1973, p. 218)
Fromm goes on to explain that destructiveness is partially a re-
sult of our existential quest for meaning where meaning seems not to
24 Societal Contributions to Discrimination
exist. It is founded in the feelings of loneliness and dread. It is
partially founded in man's feeling of helplessness in a monstrous
world of atomic destruction, or the threat of destruction. Destructive-
ness is man's attempt to control others rather than be controlled by
others. This natural aggression becomes distorted and is manifested
in an unending succession of inhumane acts visited on fellow men. It
becomes easier to understand some of the attitudes of the public
toward disabled persons from this frame of reference. Prejudice and
hostility can be understood partly as social phenomena related to
certain developments in any modem culture which produce isolation
and fear.
The handicapped person, child or adult, needs to understand the
roots of aggression and prejudice in our culture at this time in his-
tory. Probably more than most other groups, the disabled will face
aggression and prejudice on a day-to-day basis. The causes will vary
from person to person and from situation to situation. There are no
easy solutions, and no easily taught defenses against these problems.
The message is clear, however; the disabled should be trained to
expect such attitudes and be given responses which can be applied
to meet these dilemmas.
One other approbation should be discussed in this cursory de-
scription of attitudes of the public as they impose on the disabled
person who is striving for inclusion in the American dream. It is the
warning that society and social policy are often against individuals.
As much as we believe in the rights of individuals in this country, we
also believe in rule by the majority. Many of the present social and
personal conflicts which are being worked out in the courts pertain
to this theme. Does the government, in the name of the larger major-
ity, have the right to infringe on the rights of the individual, and if
so, to what degree and in what specific instances?
This natural conflict between an individual's rights and society's
rights would appear to be one of the more critical issues to be faced
by our court systems in the next 25 to 50 years. How do you safe-
guard the rights of the majority against seemingly inappropriate de-
mands by individuals. Again, should every bus kneel? One of the
factors which makes this controversy border on the tragic is that
there is an obvious degree of "madness" on each side. There are
individuals who will use the protection of individual rights to
achieve some dubious accomplishments. The use of the legal proc-
esses to protect those engaged in drug trafficking, child pornography,
and child prostitution makes even the diehard liberal sometimes
question the supreme rights of the individual.
In a different vein, Jules Henry has been writing on this subject
Should Every Bus Kneel? 25
for years from a perspective of an anthropologist. He has spoken a
message which the disabled should take to heart. That message is
that culture is a two-edged sword, partially helpful but also very
much antagonistic toward the fate of an individual man. His most
urgent statement of that theme is found in Culture against Man.
Ours is a driven culture. It is driven on by its achievement, com-
petitive, profit, and mobility drives, and by the drives for security and a
higher standard of living. Above all, it is driven by expansiveness.
Drives like hunger, thirst, sex, and rest arise direcdy out of the chemis-
try of the body, whereas expansiveness, competitiveness, achievement,
and so on are generated by the culture; still we yield to the latter as we
do to hunger and sex. Side by side with these drives is another group of
urges, such as gentleness, kindliness, and generosity, which I shall call
values, and in our culture a central issue for the emotional life of every-
one is the interplay between these two. (Henry, 1965a, p. 13)
To say that culture "teaches" puts the matter too mildly. Actually
culture invades and infests the mind as an obsession. . . to engulf the
mind so that it will see the world only as the culture decrees that it shall
be seen; to compel a person to be absurd. (Henry, 1965a, p. 297)
If this book can be said to have a message it is that man wrings
from culture what emotional satisfaction he obtains from it. (Henry,
1965a, p. 11)
Another fascinating book that Jules Henry wrote deals with the
analysis of several family constellations in which one of the children
suffered a severe form of mental illness. In this book, Pathways to
Madness (1965), he attempts to describe the vast array of interfaces
which constantly support or cause disintegration of family members.
He writes of a variety of human rituals which are daily acted out and
which help to protect each person's sanity. To be made constantly
aware of the absurdities in any culture is enough to drive any person
to despair. Thus we develop defenses to protect ourselves from our
own insight as much as we need to protect ourselves from others.
One of these mechanisms is "sham" and would seem to be an
important tool for the disabled to have in their response repertoires.
An understanding of the concepts of what Henry calls black and
white sham is critical for the maintenance of sanity in our society:
One has to make a distinction — always fuzzy but always necessary —
between black sham and white. Black sham is used to exploit and even to
destroy people; white sham is merely socially necessary concealment
and pretense. One uses black sham to sell a person down the river or to
beat him out for a job, and white sham simply to get along with others —
26 Societal Contributions to Discrimination
even one's own mother. Black sham is kilhng sham — like black magic;
white sham preserves social relations. (Henry, 1965b, p. 100)
Sham is a combination of concealment and pretense; concealment
of how we really feel and pretense of feeling something different. . . .
Social life compels deception, for even the most truly innocent among
us are constantly compelled by fear to act as if they wished to do what
they would rather not do. . . . The real problem is not whether to be a
sham, but to understand when to drop the mask and when to put it on.
(Henry, 1965b, p. 99)
The lessons to be learned go beyond the fact that disabled per-
sons need to understand the function of aggression and prejudice as
they operate in our social system. That is not enough. Needed also is
a heavy dose of skepticism — an awareness of the seeming antago-
nisms of society toward each and every individual. It is the nature of
any society to be against individual members at certain points, to be
ready to sacrifice one person's good for the good of many. It is also a
lesson that culture's basic antagonism toward individuals requires
that we firmly hold onto a perspective that allows us to survive
within our cultures. Jules Henry is not the first writer to point out
our need to make peace with society through the use of rituals such
as sham. Even the nondisabled must deal with the insanity of our
culture, its distortions, and its misplaced values which make every-
body's life a little absurd at times.
The Unmeltable Ethnics: A Ray of Hope
The themes that I have tried to develop so far are twofold. First,
many of the value systems operating in modem America offer little
hope for success and satisfaction to the disabled, who simply cannot
compete and win any significant share of the rewards in open com-
petition. Second, the disabled will always face a degree of hostility
and prejudice in our society. This is partly true because of the nature
of prejudice, and partly because in a number of ways our society is a
bit absurd. Societies that believe in majority rule ultimately must
side with the group and against any individual.
As a conclusion to this chapter, I would like to suggest a third
theme, knowing full well that all the themes have only been
sketched out and not fully developed and "proven." The third theme
is more optimistic for the future. It has been suggested by a book
written by Michael Novak, The Rise of the Unmeltable Ethnics
(1973). It is one of a number of recent books that have attempted to
Should Every Bus Kneel? 27
break down another of our most enduring myths. This myth is that of
the melting pot, the idea that America can absorb many different
types of people. In this view a group of immigrants become Ameri-
canized and absorbed into the mainstream of America. Novak insists
that this no longer happens, partly because the price is too high:
What price is exacted by America when into its maw it sucks other
cultures of the world and processes them? What do people have to lose
before they can qualify as true Americans?
For one thing, a lot of blue stars — and silver and gold ones — must
hang in the window. You proved you loved America by dying for it in
its wars. . . .
I don't have other figures at hand. But when the Poles were only
four percent of the population (in 1917-19) they accounted for 12 per-
cent of the nation's casualties in World War I. "The Fighting Irish" won
their epithet by dying in droves in the Civil War.
There is, then, a blood test. "Die for us and we'll give you a
chance." (Novak, 1973, pp. xxxii-xxxiv)
To become accepted as part of real America, many groups went
through years of exclusion and years of melting before becoming
Americanized. Often the price was great, often the melting did not
occur. The land we live in advertises equal opportunity as a way of
life and cultural pluralism as a reality. Novak is not convinced that
we really have an existing cultural pluralism, even though we be-
lieve in it.
No one has yet contrived an image, let along a political system, for
living in a genuinely pluralistic way. The difficulties are obvious. How
can each cultural minority be true to itself without infringing on the
liberties of others? How can each person belong to a given ethnic group
to the extent that he or she chooses, and be free as well to move into
other groups? (Novak, 1973, p. 9)
What is seen as a positive leap by Novak is that we are begin-
ning to find ethnic groups who wish to retain their ethnicity — their
identity. This he suspects is the beginning of real cultural pluralism.
Thus the Italians retain their fierce loyalties and ties to all the lore of
Italian life as well as moving in the American mainstream. What
makes this a critical movement, and a ray of hope, is that it signifies
the beginning of an idea — that its melting pot is not only unneces-
sary; it is not helpful.
This is a very touchy point. Persons who have come from other
cultures and who have worked hard to become acculturated are very
28 Societal Contributions to Discrimination
proud of their accomplishments and speak fiercely about the sacri-
fices they made so that their children could share the good life. At
issue for the handicapped is the simple fact that their handicaps will
not disappear, will not melt in the melting pot. The handicapped
will not succeed in becoming totally acculturated, totally American-
ized. The message from Novak is that there is no reason to try.
Novak speaks of this movement in relation to European immi-
grants and asserts a need for real cultural pluralism. A good example
of this is the movement toward bilingual education in our schools.
The proponents of bilingual education state clearly that the child
does not have to give up his native language. The schools should
provide instruction in another language as well as English. Perhaps
someday our culture will accept the concept of a multilingual soci-
ety, just as Novak would recommend a real cultural pluralism.
The advantages to the disabled are becoming clear. If the melt-
ing pot is gone, then not everybody must be absorbed into the domi-
nant superculture. Thus, perhaps the handicapped will not have to
strive so hard to make it in our culture to be accepted, as so many
generations of immigrants have done. A stronger commitment to cul-
tural pluralism will lead to a healthier appreciation of the value of
individual persons with a handicap.
One final note of caution from Novak: the struggle for an ade-
quate place in the American scene is not always helped by those
persons designated as the intellectuals in our society. Novak asserts
that although the common man in our society believes that the intel-
lectuals at colleges and universities are the most powerful in our
society, those people firmly believe themselves that power really
resides in businessmen (Novak, 1973). Leadership should not auto-
matically be expected from the intellectuals in this quest.
It goes without saying that the intellectuals do not love "middle"
America, and that for all the good, warm discovery of America that
preoccupied them during the 1950s no strong tide of respect accumu-
lated in their hearts for the Yahoos, Babbitts, Agnews, and Nixons of the
land. Willie Morris in North Toward Home writes poignantly of the
chill, parochial outreach of the liberal sensibility, its failure to engage
the humanity of the modest, ordinary little man west of the Hudson.
The Intellectual's Map of the United States is succinct: "Two coasts
connected by United Airlines." (Novak, 1973, p. 70)
Thus we are back at the starting point. The disabled will not find
a "protector" within the ranks of most intellectuals, because they be-
lieve very firmly in a meritocracy. They compete and win and do not
really understand what it means to be handicapped in our society.
Should Every Bus Kneel? 29
Where, then, do the handicapped look for leadership in their quest for
acceptance as an integral part of our culture? How do they fight value
systems which are so productively oriented? What are good defense
mechanisms for them to use against prejudice and hostility?
Perhaps I should have begun by admitting no special knowledge
about the solution to those questions. The questions alone seemed
important enough, and central enough to the future of our field so
that the dilemmas should be described. Of one thing I stand firmly
convinced; the next 25 years will force us to deal with these issues.
They will become as important as adequate research data on reliabil-
ity and validity of assessment instruments. They are fundamental
because they speak of the way one person reaches out to another, of
the way we strive to understand others, of the ways we can learn to
appreciate others, and thus add value to our own lives.
References
Allport, G. W. The nature of prejudice. New York: Doubleday, 1958.
Fromm, E. Escape from freedom. New York: Holt, Rinehart & Winston,
1965.
Fromm, E. The anatomy of human destructiveness. New York: Holt, Rine-
hart & Winston, 1973.
Henry, J. Culture against man. New York: Vintage Books, 1965 (a).
Henry, J. Pathways to madness. New York: Random House, 1965 (b).
Hofstadter, R. Social Darwinism in American thought. Boston: Beacon
Press, 1955.
Novak, M. The rise of the unmeltahle ethnics. New York: Macmillan, 1973.
Reich, C. A. The greening of America. New York: Random House, 1970.
The New York Times, November 18, 1979.
3 The Disabled Face a
Schizophrenic Society
Cynthia Griggins
"Do I want to go on like this?"
Counseling the spinal cord injured, I have more than once wit-
nessed a quadriplegic struggle with this question. For the most
part, my "counseling" in these situations has consisted of holding
my breath and crossing my fingers, hoping he will decide "yes." So
far they all have, and each time I have walked away with a vague,
guilty sense of relief, much like the relief I experienced as a school-
girl when I hadn't done my homework and the teacher called on
me, but the bell rang before my ignorance was revealed. Being
able-bodied, I have gotten by on some untested beliefs about the
possibility of a "rich, full life" even as a quadriplegic. Later, among
friends, I admit that I honestly don't know what I would do if I
were quadriplegic, but it's left at that. No one ever really presses
me for an answer.
There are, however, two recent plays that force a more serious
look at some of the issues raised in counseling the disabled. In The
Elephant Man (which has also been made into a movie), and Whose
Life Is It Anyway? the protagonists are both severely disabled and
both choose to die. Not that unbelievable, but the catch is, they are
not "losers." John Merrick and Ken Harrison are both exceptional
people — bright, insightful, spirited, capable. In the type of story we
are most familiar with, these men would have struggled with their
conditions and come out on top, winning the respect and love of
those around them. Their stories would have had happy endings.
These did not. Why did these men choose to die? How much of it
The author wishes to thank John Garwood, Astrid Schlaps, and Deborah Van Kleef for
their criticisms and editorial comments, and Jay Adler for many long discussions of the
ideas.
Extracts in this chapter from Whose Life Is It Anyway? by Brian Clark are reprinted
by permission of Dodd, Mead and Company, Inc. © 1978 by Brian Clark.
30
The Disabled Face a Schizophrenic Society 31
had to do with the disability itself, and how much was related to
society's response to their disability?
On the surface, in considering the situation of disabled persons
in our society, one might think all is going well — or as well as can be
expected. Are they not becoming more visible? Are not medical ad-
vances making more things possible for them? Don't we have wel-
fare programs to help them financially and affirmative action to em-
ploy them? And aren't we passing legislation to ensure disabled
people their full rights as citizens? As minority groups go, one might
say the disabled are doing pretty well. But one does not have to look
very far beneath the surface to see that something is wrong. The
Rehabilitation Act of 1973 has still not been fully implemented;
sheltered workshops, which employ a large percentage of the dis-
abled, still often pay only one-half of minimum wage. Indeed, only
an estimated 42 percent of the disabled are employed at all, even
part-time, and the average income of a disabled individual is far
below poverty level. One could go on and on with indications that all
is not well with the "handicapped." Though on paper it seems that
they are surging ahead in their struggle for equality, it does appear
that society is somehow dragging its feet. Is it simply that the
struggle is still in its early phases? Will the disabled, as blacks,
women, and other minorities, simply need more time to be fully
accepted and assimilated in the great melting pot? This may be the
case; they are young in the sense of being a group, and new to most
of us. Nevertheless, it seems that something is amiss. There is some-
thing contradictory and disturbing about society's attitude toward the
disabled which is behind the foot-dragging, something that is caus-
ing us to push them forward with one hand and hold them back with
the other. It is this problem that is explored in the two plays men-
tioned above, and which I would like to discuss in this chapter.
Although their stories are set nearly 100 years apart, a similar
situation confronts Ken Harrison, the quadriplegic protagonist in
Whose Life is it Anyway?, and John Merrick, the deformed title
character of The Elephant Man. Both have been rescued from death
by humane and caring individuals in the medical establishment. Ken
Harrison suffered instant and total quadriplegia as a result of an
automobile accident, and in the play we meet him in his hospital
bed, recently stabilized medically and now facing rehabilitation. He
can move nothing from the neck down, and though he was previ-
ously a talented, successful sculptor and art teacher, he knows that
his long-term goals now can be little more than feeding himself with
assistive devices. John Merrick, the Elephant Man, is a grossly de-
formed young man, a victim of neurofibromatosis, who is taken from
32 Societal Contributions to Discrimination
abject poverty and a freak-show existence into the protective envi-
rons of a London hospital, where he is cared for, educated, and
introduced to the high society of London in the 1880s. Although both
characters seem to have reasonably good lives ahead of them —
certainly the best that could be expected for people in their condi-
tions— they both choose death. Ken Harrison chooses his very di-
rectly. In fact, the action of the play centers around his struggle to be
allowed to die. No one will let him — and only after the court orders it
does the hospital administrator finally withdraw medical supports
that are keeping Ken alive. John Merrick chooses his death indi-
rectly, by sleeping not in his usual upright position (which was nec-
essary in order to keep breathing) but lying down "like normal
people," causing himself to be asphyxiated.
The situations of these two characters are metaphors for that
faced by all the disabled. In exploring the reasons for their deaths,
one might begin to see the confused and often destructive attitudes
we present toward the disabled, usually with the best of intentions.
These attitudes are probably encountered in their clearest form in
the disabled person's relationship with the medical community. The
relationship is basically an authoritarian one, racked with problems in
control over decision making, the use of technology, and lack of con-
cern for the quality of life. In part, these three problems seem to stem
from the medical community itself, but in most cases I think it is only
fair to recognize that professionals are only the media for cultural
attitudes and values. They are the people who carry out our wishes and
embody our moral confusions. Though morality, power, self-interest,
and charity are inextricably linked in these issues, I will attempt to
tease these apart sufficiently to discuss three areas of conflict between
the disabled and the medical community, each suggested by the plays
mentioned above. Consider first the problem of decision making.
Although Ken Harrison's very existence depends on medical
technology, the choice itself to apply that technology has never been
presented to him. Indeed, even when Ken is in a position to make
such a choice, the physician will not allow it. This is how the doctors
perceive the situation:
Dr. Scott: It's his life.
Dr. Emerson: But my responsibility ....
Dr. Scott: No Clare, a doctor cannot accept the choice for death; he's
committed to life. When a patient is brought into my unit, he's
in a bad way. I don't stand about thinking whether or not it's
worth saving his life. I haven't the time for doubts. I get in
there, do whatever I can to save life. I'm a doctor, not a judge.
The Disabled Face a Schizophrenic Society 33
The issue is clouded by ethical questions about preserving life at all
costs, which I will discuss below, but the point I would stress here is
that the doctor is indeed playing judge, regardless of the content of
his decision. He has decided Ken should live and takes appropriate
action to this end. Now, it is obvious that an unconscious individual
cannot make such a decision, and even if he could, he would in all
likelihood choose to receive the necessary medical treatment until
he is stabilized and could tell what his long-term condition might be.
But even then, when such knowledge is available and quite definite,
Ken still is allowed no choice. Dr. Emerson states: "just because our
patient is conscious, that does not absolve us from our complete
responsibility. ..."
Most doctors, I am quite sure, would argue, as does Dr. Emer-
son, that this is a moral question and that they are compelled to save
life by the Hippocratic oath. But when a patient espouses a different
moral code, what is a physician to do?
Ken: . . . morally, you must accept my decision.
Dr. Scott: Not according to my morals.
Ken: And why are yours better than mine? They're better because
they're more powerful. I am in your power. To hell with a mo-
rality that is based on the proposition that might is right.
The issue, in my mind, does indeed come down to power. The ques-
tion of life versus death is of course the most extreme, and therefore
the most dramatic. But I think the issue of the professionals' power
and authority infuses nearly every aspect of the rehabilitation experi-
ence: when a patient should be treated, what type of treatment he
should receive, what type of setting he should live in, when he
should be discharged. The power of the disabled individual in these
decisions is puny. Of course, he can always discharge himself
"against medical advice," but there are punishments for this, like
many hospitals' policy of denying subsequent admission for a certain
period of time!
The implication behind the medical and rehabilitation establish-
ment's position is "we know what's best for you." This statement is
usually rationalized by the professional's superior knowledge and ex-
pertise. Ken Harrison admits to an examining physician that his
knowledge of neurology, endocrinology, urology, and so on is inferior.
Ken: ... and in so far as these bear on my case, I should be grateful
for information so that I can make a proper decision. But it is
my decision. If you came to my studio to buy something, and
34 Societal Contributions to Discrimination
look at all my work, and you say: "I want that bronze" and I
say to you: "Look you don't know anything about sculpture,
the texture is boring and it should have been made in wood
anyway. You are having marble!" You'd think I was nuts. If
you were sensible you'd ask for my professional opinion but if
you were a mature adult, you'd reserve the right to choose for
yourself
Dr. Travers: But we're not talking about a piece of sculpture . . . but about
your life.
Ken: That's right Doctor. My life.
Dr. Treves, John Merrick's physician, is more clearly an oppor-
tunist serving to gain by treating the sensational "Elephant Man."
Nonetheless he is kind and caring toward his patient. Repeatedly
throughout the play he takes action which he explains to Merrick is
"for your own good." The effect of such a doctor-patient interaction
is clear: Merrick becomes more and more infantilized and stripped of
his dignity. And that is precisely the issue — the repeated denial of
choice to an individual robs him of his dignity and transforms him
into something less than human.
In the context of these plays, it is possible to understand why
dignity for some individuals might be choosing life, whereas for
others it might mean choosing death. It is the locus of the decision
making that is crucial — more crucial than the content of the decision
itself. Ken articulates this powerfully as he argues his right to choose
with the judge:
Ken: ... I will spend the rest of my life in hospital . . . while I am here,
everything is geared just to keeping my brain active, with no real
possibility of it ever being able to direct anything. As far as I can
see, that is an act of deliberate cruelty.
Judge: Surely it would be more cruel if society let people die, when it
could, with some effort, keep them alive.
Ken: No, not more cruel, just as cruel.
Judge: Then why should the hospital let you die — if it is just as cruel?
Ken: The cruelty doesn't reside in saving someone or allowing them to
die. It resides in the fact that the choice is removed from the man
concerned ....
Judge: But wouldn't you agree that many people with appalling physical
handicaps have overcome them and lived essentially creative, digni-
fied lives?
Ken: Yes, I would, but the dignity starts with their choice. If I choose to
live, it would be appalling if society killed me. If I choose to die, it
is equally appalling if society keeps me alive.
The Disabled Face a Schizophrenic Society 35
Judge: I cannot accept that it is undignified for society to devote resources
to keeping someone alive. Surely it enhances that society.
Ken: It is not undignified if the man wants to stay alive, but I must restate
that the dignity starts with his choice. Without it, it is degrading
because technology has taken over from human will. My Lord, if I
cannot be a man, I do not wish to be a medical achievement.
If one examines the issue of choice in medical management to-
day, at the dawning of the 1980s, one senses an even more disturbing
development, which could compromise even further the dignity of
the disabled person. Ken refers to the role of technology, the second
of the problem areas mentioned earlier, at the end of the speech
above. Used appropriately, with the full consent of the patient, mod-
em medical technology is, of course, a godsend. I doubt if even the
most adamant antitechnologists would reject an operation that could
give vision to a blind man or movement to a quadriplegic. But the
question which must be faced by the moral man is: How is modem
technology affecting human will and decision making? How much
medical treatment is delivered simply because the technology exists,
and not because an individual has decided that he really wants it?
And here I am talking not only about patients, but about physicians
also. Does the physician make the decision to provide a certain treat-
ment, or does he feel compelled simply because that treatment ex-
ists? Do we not act as if under a God-given mandate: if the technol-
ogy exists, you must use it! Must we? Such a stance threatens to
replace human decision — even that of the physician! And the dis-
abled individual stands even less of a chance establishing his auton-
omy against an unquestioned technology than he does trying to op-
pose the decisions of another individual — even that of a physician.
I am by no means rejecting modem medical technology. It has
offered millions of disabled people better lives, or life itself. How-
ever, the issue is this, the third problem area outlined earlier: regard-
less of who makes the decision regarding the treatment of the dis-
abled individual, is the decision being made with consideration for
the quality of life?
The answer to that question has traditionally been negative.
Given the authority to save life or not, the medical community will
almost always choose the former, regardless of consequences. This, of
course, is only the reflection of a basic societal attitude toward life:
that life (in the abstract) must be preserved at all costs (except in cases
in which an ideal or belief is at stake). This is a Judeo-Christian belief
firmly rooted in our culture for at least the last 2000 years. It is, of
course, the same moral question being debated by the pro-abortionists
36 Societal Contributions to Discrimination
and the Right-to-Life groups, and which has self-maiming, suicide,
and euthanasia on the books as criminal offenses since feudal times.
The philosophical bases of this question are complex, and I cannot
pretend to offer any new insights into this controversy. But I do want
to stress that our basic confusion and ambivalence over this issue
profoundly affect disabled persons in this society.
Knowing the extreme suffering and hardship a severely disabled
person will certainly face for the rest of his life, when life-saving
measures are applied, the question must be asked — Why? What for?
Certainly, the question of whether or not to survive is not the issue
with the majority of the disabled, whose functioning is not so pro-
foundly affected as Ken's in Whose Life Is It Anyway? (Or maybe it is
the issue; I don't know how severely disabled one has to be to ques-
tion the worth of going on.) But what must be questioned is decision
making that blindly chooses life without regard to quality of life, deci-
sion making that does not consider that the quality of life is often
cruel, and always unfair to the disabled person himself, decision mak-
ing that does not struggle with the questions: Why? What for?
The end result of such blind decision making is that we often
end up saving the lives of individuals whom we then don't quite
know what to do with. So a total quadriplegic is kept alive — then
what? What does our society have to offer him? Ken presses the
point with the hospital social worker who was sent to improve his
motivation:
You'll be surprised how many things you will be able to do
with training and a little patience.
Such as?
We can't be sure yet. But I should think that you will be able
to operate reading machines and perhaps an adapted type-
writer.
Reading and writing. What about arithmetic?
(Smiling) I dare say we could fit you up with a comptometer if
you really wanted one.
Ken: Mrs. Boyle, even educationalists have realized that the three
r's do not make a full life.
Mrs. Boyle: It's amazing what can be done. Our scientists are wonderful.
Ken: They are. But it's not good enough you see, Mrs. Boyle. I
really have no desire at all to be the object of scientific virtu-
osity. I have thought things over very carefully. I do have
plenty of time for thinking and I have decided that I do not
want to go on living with so much effort for so little result.
Mrs.
Boyle:
Ken:
Mrs.
Boyle:
Ken:
Mrs.
Boyle:
The Disabled Face a Schizophrenic Society 37
An entire rehabilitation system is built on this premise — that a
human being is the sum of a number of functions. By definition, a
fully rehabilitated individual is that person who' can perform each
and every function of which he is physically capable. If he can actu-
ally go out and work a job, be truly "productive," that is the ultimate
victory. But even if he can perform "ADL" (activities of daily living,
as our lingo goes), if he can feed himself, if he can get from his house
to the grocery store, if he can somehow call up the plumber on the
telephone without anyone's help, this is seen as success. How on
earth did we get to this definition of a human being? What makes
"functions" so important? And how does this affect our attitudes
toward the disabled? Actually, I think it is quite simple. The goals
and values we establish for the disabled are one and the same as
those we hold for ourselves.
Consider how modem America is a highly technological, capital-
istic society. It is a society that worships growth, expansion, produc-
tivity, and achievement. Thriving on competition, it cherishes its
myths full of adventure-seekers and common men who work their
way to the top in this "land of opportunity." The good and moral
man is one who "makes a contribution to society." He is strong, not
weak; healthy, not sick; beautiful, not ugly; self-sufficient, not de-
pendent. He is John Wayne, vanquishing his enemies throughout his
life, and denying his mortality and vulnerability even as cancer eats
away at his body.
Recognizing these basic values, it would be dishonest (or schizo-
phrenic) to say that America loves the cripple. How could she? To be
crippled is almost to be un-American! So the only way we, as a
society, can possibly deal with these anomalies is if they are actively
engaged in denouncing and ridding themselves of those un-
American characteristics. Somehow, a quadriplegic who is working
and learning to dress himself (even though it may take him half a
day) is more palatable than a quadriplegic who is doing nothing. It's
bad enough that they can't contribute to society — at least they can
look busy! "Being" has never been an act much favored by Ameri-
cans. "Doing" is preferred. Actually it's our national passion. Men
and women are measured by what they can do. So why should we
expect any different from our cripples?
In keeping with these values, rehabilitation programs in this
society are designed to eliminate as much as possible the undesir-
able aspects of disability (dependency, weakness, unsightliness,
etc.), to keep the disabled looking busy, and to get them "doing" as
much as possible, regardless of what it is. (This is roughly the same
38 Societal Contributions to Discrimination
philosophy that sees working at a menial, degrading job, for far less
than minimum wage as better than doing "nothing.")
These, I believe, are the attitudes which permeate the environ-
ment in which Merrick, Harrison, and all the disabled must live.
They are contradictory and schizophrenic. We preserve life at all
costs, then fail to consider the quality of that life. We treat the dis-
abled with great kindness and concern, voice our respect for them,
then despise them because they cannot live up to our values. We talk
of full lives of dignity for the disabled, then deprive them of the
choices necessary to maintain that dignity. Within the contexts of
their respective plays, I believe Merrick and Harrison's deaths were
a result, at least in part, of these schizophrenic attitudes. Both char-
acters were sensitive and bright enough to be aware of the ambigui-
ties, and both had enough integrity to say "No — I will not tolerate
living under such conditions!"
Is suicide the only solution, however? Is it the disabled person's
only alternative to a life stripped of its dignity? My experience with
disabled people has shown me that this clearly is not so. I have met
many who have survived — and done it with great dignity.
The secret seems to lie in the disabled person's reclaiming con-
trol over his own life. It involves wrestling back from the hands of
others the power to make decisions for oneself, all decisions from the
most important of whether to live or die, down to the least significant
acts of daily life — what to eat, when to sleep, where to go today. It
involves not only exercising control over one's actions, but being
able to establish one's own goals, set one's own standards, and
choose one's own values to hold dear.
The history of minorities in this country has basically been the
story of "different" individuals struggling to achieve just this control
over their lives. Blacks, women, Chicanos, and American Indians all
have fought the same battle. What the disabled can learn from these
other minorities is, first, that it is indeed a battle and, second, that
battles are won by organized groups. No real progress was made by
any of these people until they joined together and became a political
force, assertively demanding control over their own lives. The major-
ity guards the status quo jealously and does not change on its own.
Until the disabled realize that they must become political creatures,
that they must develop their own values and standards and actively
demand power that is rightfully theirs — until they organize, their
situation will not change substantially.
As for the able-bodied, specifically the rehabilitation and medi-
cal establishment who see themselves as the "helpers" of the dis-
abled— they must realize that they can take away dignity, but they
The Disabled Face a Schizophrenic Society 39
cannot give it. Therefore their role is circumscribed. They must fo-
cus on their own ambivalent attitudes and the ways in which they
dehumanize the disabled by depriving them of decision-making
power. They must relinquish such control and give the disabled the
only true respect there is: respect for their ability to make choices
and to live their lives as they see fit.
References
Clark, B. Whose life is it anyway? Derbyshire: Amber Lane Press, 1978.
Pomerance, B. The elephant man. New York: Grove Press, 1979.
4 Social and
Psychological
Parameters of
Friendship and
Intimacy for Disabled
People
Constantina Safilios-Rothschild
Our era is one in which the right to intimate relationships has
almost become a constitutional right to self-fulfillment and happi-
ness. But this is also an era in which individualization and a narcis-
sistic crisis make such intimate relationships strained and proble-
matic (Lasch, 1979). Especially intimate relationships between men
and women have plunged into new depths and impasses as old
rules and hang-ups have not altogether disappeared, and new
models have not been widely accepted (Safilios-Rothschild, 1977;
1980). Nonsexual friendships, on the other hand, have become in-
creasingly important in people's lives, because they provide needed
intimacy without heartbreaking complications as well as a reassur-
ing continuity beyond breakups and divorces (Safilios-Rothschild,
1977).
There is, to some extent, a thin definitional line between the
disabled and the nondisabled, but those with visible disabilities and
those with chronic illnesses and disabilities that interfere considera-
bly with their ability to communicate, to move about, and to function
in everyday activities are rather clearly set apart from the so-called
"nondisabled." For disabled people, the serious difficulties and di-
lemmas confronting the nondisabled in the area of intimate relation-
ships are multiplied, and new problems are introduced by the pres-
ence of the disability.
40
Social and Psychological Parameters of Friendship and Intimacy 41
Disabled People's Rights to Intimate Relationships
Probably the clearest indication that disabled people have second-
class citizenship is the existence of a debate as to whether several
categories of disabled people can or should marry or have children.
Though the debate is becoming increasingly less relevant or power-
ful, many of the issues and dilemmas remain.
Rehabilitation has, until very recently, focused on and been legit-
imized by disabled peoples' return to gainful employment and to edu-
cation and/or training to the extent that it was essential to gainful
employment. No concerted effort was made to help disabled people
maintain and re-establish satisfactory interpersonal relationships and
intimacy, because it was not considered necessary (Greengross, 1976).
After all, these were disabled people, and, as second-class citizens,
they could not expect to have the same rights and privileges as others.
It was believed and often written that "they should be grateful to be
able to work and be financially independent," and the disabled were
socialized to share these beliefs (Safilios-Rothschild, 1976). The lack
of concern with the social and psychological well-being and rights of
the disabled in the 1950s and 1960s was illustrated by the fact that
rehabilitation success was measured by the disabled person's gainful
employment and not by the extent to which the type of work they did
corresponded to their education and experience or the extent of pro-
motion and advancement possible (Safilios-Rothschild, 1970).
These trends continued as long as the nondisabled kept making
the important decisions for the disabled and as long as the voices of
the disabled, like those of other second-class citizens, such as the
old, the poor, and women, were not heard. Nondisabled people in
different types of positions and with different degrees of authority
made not only medical but also personal decisions for the disabled,
including decisions as to whether they could be "good" marital
partners and responsible parents. The nondisabled used criteria, in
making these decisions, that required levels of ability and responsi-
bility that few nondisabled people could meet.
In the absence of a social movement for the disabled or of a strong
identification among them with other disabled people, the well-
educated and highly skilled among them did not become spokesmen
for others with disabilities, but were integrated into the nondisabled
world instead. The same has been true for all other minority groups.
In the 1970s, however, the social movement of the disabled began to
emerge with a different intensity in some states and cities, and many
eloquent disabled people were heard. As soon as the disabled people
42 Societal Contributions to Discrimination
started to talk about themselves and their wishes, it became quite
clear that they wanted their full rights and that their criterion for
successful rehabilitation is the ability to establish intimate relation-
ships: friendships, love, marriage. In a sense, it is ironic that disabled
people have now gained the right to intimate relationships when we
are all groping for ways to establish rewarding, meaningful, secure
relationships and very few, through trial and error, are succeeding.
Type of Disability and Degree of Stigmatization
Disabled people's ability to establish interpersonal relationships and
intimacy is greatly influenced by the type of disability and the de-
gree of stigmatization of the disability. There is considerable evi-
dence that some disabilities are consistently more stigmatized than
others among the disabled as well as the nondisabled. Autobio-
graphical accounts by disabled people have clearly shown how those
who are less stigmatized are quite prejudiced against those who are
more stigmatized (Hunt, 1966).
One study has shown that the five least stigmatized disabilities
are ulcers, arthritis, asthma, diabetes, and heart disease in ascending
order of stigmatization (Tringo, 1970). It is interesting to note that
these disabilities are quite prevalent and can afflict those with high
social status, especially men. Ulcer and heart disease, after all, have
been the disabilities of masculine occupational success. In addition,
the high prevalence of these disabilities increases people's familiar-
ity with them, since most people have probably had contact with an
afflicted family member or close friend. This type of contact and
familiarity has been found to be conducive to significant decreases in
prejudice (Gaier et al., 1968). This may explain why they are not
stigmatized and why the disabled persons can have intimate relation-
ships as "normal" as their symptoms and their own self-definitions
and reactions to their disability will allow them.
After those five least-stigmatized disabilities, the hierarchy goes
as follows: amputation, blindness, deafness, stroke, cancer, old age,
paraplegia, epilepsy, dwarfism, cerebral palsy, hunchback, tuberculo-
sis, criminal record, mental retardation, alcoholism, mental illness
(Tringo, 1970). What is quite peculiar in this hierarchy is that cancer,
despite the fact that it is quite widespread and very often afflicts
high-social-status males, is more stigmatized than blindness and deaf-
ness, disabilities which are very often congenital and seriously impair
the disabled person's ability to communicate. A possible explanation
is the fact that the data were collected in the late 1960s before facts
Social and Psychological Parameters of Friendship and Intimacy 43
and discussions about cancer became public, before prominent fig-
ures and their wives made their disabihty and treatment public, and
before the prognosis for some types of cancer was improved.
Otherwise, the hierarchy of stigmatized disabilities shows that
sensory disabilities are less stigmatized than visible disabilities that
seriously impair people's mobility (paraplegia, cerebral palsy) or de-
forming disabilities (dwarfism, hunchback). Both types of disabilities
are less stigmatized than those that are viewed as decreasing
people's ability for rationality, self-control, responsibility, or morality
such as mental retardation, alcoholism, and mental illness. Another
series of studies has shown that facial disfigurements carry the great-
est stigma among children and adults (Richardson et al., 1961), but
because mental retardation, alcoholism, and mental illness were not
included, we could hypothesize that facial disfigurement is still less
stigmatized than the above disabilities. Obesity has also been found
to be highly stigmatized (Cahnman, 1968; Richardson, et al., 1961),
possibly as much as the most stigmatized of the above disabilities
since the notion exists that obese people must lack self-control and
must be, to some extent, weak and irresponsible people.
Within the context of this chapter, we will not discuss the least
stigmatized, nonvisible disabilities. Instead, we will focus on stigma-
tized disabilities that interfere with the disabled person's ability to
establish friendships and other intimate relationships. An earlier re-
view of the relevant literature (Safilios-Rothschild, 1976) showed that,
in the case of visible disabilities, disabled and nondisabled adoles-
cents as well as adults attributed better qualities to, and preferred,
nondisabled persons as friends. In fact, a study showed that a visible
handicap was a greater deterrent to the establishment of friendship
than race (Richardson & Royce, 1968). Clearly, therefore, not only the
degree of stigmatization but also visibility of the disability are very
salient characteristics with regard to the establishment of friendships
and other intimate relationships. In addition, the onset of the disabil-
ity is a very important factor. Congenital disabilities or those that
occur during childhood or adolescence can be distinguished from
those which occur in adulthood. The ensuing discussion will take into
consideration these salient characteristics of disabilities.
The Role Played by Acquaintance on People's
Perceptions of Disabled People
Visibly disabled people consistently experience a much greater
strain in everyday interactions with nondisabled or less-stigma-
tized, nonvisibly disabled persons than those with nonvisible disa-
44 Societal Contributions to Discrimination
bilities. There is considerable evidence that very often people do
not want to enter unpredictable and, therefore, stressful interac-
tions with visibly disabled people, and they avoid doing so by
extending only "fictional acceptance" which does not go beyond a
polite, inhibited, and overcontrolled interaction (Davis, 1961;
Kleck, 1966; Kleck et al., 1966). The first impressions are difficult,
and they can color the whole interaction. There is, however, some
evidence that if this fictional acceptance stage is overcome, people's
personalities can be more important than their appearance. One
study has shown, for example, that children with normative values,
that is, more conforming children, prefer nonhandicapped children
as friends before they have a chance to get to know them more
often than nonconformist children with atypical values. After they
have a chance to get to know the children in a summer camp set-
ting, however, the difference between conforming and nonconform-
ing children disappears (Richardson, 1971). These results support
the idea that contact on a voluntary, equal basis is conducive to the
breakdown of prejudice.
The same study, however, also showed that visibly disabled
children preferred nondisabled children as friends before they had a
chance to interact with them, but they restricted themselves to the
visibly disabled children after they had a chance to interact with
both disabled and nondisabled children (Richardson, 1971). Other
autobiographies of obese adolescents have shown mixed data in
terms of friendships and dating with nonobese people (Cahnman,
1970). Before we can understand the dynamics of the impact that
acquaintance has on chances for establishing friendships and inti-
mate relationships, we need observation studies of interactions be-
tween disabled people with control of such important variables as
dogmatism and self-esteem.
Some observations have shown that a nondisabled person's ac-
ceptance of a visibly disabled person is enhanced by his or her abil-
ity to establish one close friendship with a nondisabled person (Al-
len, 1976). It seems that the existence of such a friendship increases
the desirability of the disabled person in the eyes of others and
provides a possible model for other similar relationships by "normal-
izing," in a sense, the visibly disabled person.
When it comes to the nonvisibly disabled, we know even less
how interpersonal dynamics operate once the stigmatized disability
becomes known. The research on mentally retarded who can pass as
"normals" up to a certain point cannot provide us with universally
applicable cues because of the extremely negative stigma attached to
the disability.
Social and Psychological Parameters of Friendship and Intimacy 45
Options and Dilemmas about intimate Relationships
Probably the most fundamental dilemma all minorities have to face
is whether to try to establish intimate relationships within "their
own kind" or to venture out to a wider circle of people. As Weinberg
aptly summarized the results of the dilemma for the visibly disabled:
the wider a visibly disabled person's social space (that is, the interac-
tive network with those other than "his own kind"), the narrower his
sociable space (that is, his field of intimate primary relationships —
eligible dates and mates) (Weinberg, 1968).
The organizational solution to this dilemma has been recre-
ational clubs matched by disabled people's associations, which have
been serving similar recreational functions. Of course, there is a
basic difference between recreational clubs established by hospitals
or agencies for the disabled and associations controlled by the dis-
abled. The second are clearly preferred by the disabled. But even
becoming a member of the Association of the Little People of Amer-
ica or of deaf communities implies a more or less complete identifi-
cation with other dwarfs and midgets or deaf people and abandoning
the attempt to establish intimate relationships with nondisabled
people or even people with different types of disabilities. In the case
of deaf people, the identification with the deaf community is not
only at the sociopsychological level. It has clear-cut behavioral con-
sequences, namely, the use of sign language rather than speech and
lip-reading to communicate (Higgins, 1979). Sign language as a com-
munication strategy is clearly directed only toward other deaf people
who use sign language and identify with other deaf people. In this
way, the deaf cut themselves off from possibilities for interaction and
relationships with the nondeaf, including those with other kinds of
disabilities.
Although the example of the deaf is an extreme one, because
basic communication is involved, the patterns are similar, though
somewhat less drastic, for other disabled groups. For those who be-
come disabled as adults, it is often more difficult to stop identifying
with the nondisabled than for those who were socialized into dis-
abled status, especially by going to special schools.
Those who refuse to identify with the disabled "of their own
kind" may develop different social and psychological strategies to
cope with their disabilities, especially when the disability is visible
or when it interferes with everyday functioning. At the psychological
level, they may still think of themselves as nondisabled by stretching
the boundaries between disabled and nondisabled on the one hand,
and by clearly differentiating themselves from other more severely
46 Societal Contributions to Discrimination
or more stigmatized disabled people, on the other hand. At the social
level, they may develop different sets of strategies to deal with im-
portant dilemmas such as the following:
1. If they already have intimate relationships or a spouse, de-
pending on the quality of the relationships and the reactions of the
nondisabled spouse, the disabled person may emphasize or de-
emphasize the disability.
2. If they do not have an intimate relationship or a spouse (or
have lost their partner because of the disability), they may put on
an overconfident act and try to initiate relationships at the risk of
being hurt. Or they may try to maximize the probability of succeed-
ing by offering more than they receive or by selecting partners of
lesser attractiveness or desirability. Of course, it must be noted that
sometimes they may find themselves in a passive role. Some men
and women may prefer and choose a disabled person for a friend,
lover, or spouse for a variety of reasons. They may be insecure
people who feel that there is less likelihood of being jilted and hurt
in a relationship with a disabled person who has less options and
would be "grateful" for the relationship. They may be idealistic
people who need to help and love disabled people who are rejected
by others and feel lonely and unhappy. They may be unattractive,
or not very successful or socially desirable people who think that
the other person's disability outweighs their own characteristics of
low "market" value (the classical case is that of an attractive blind
man or woman who marries an unattractive partner). But there are
many other examples in which intimacy with a less desirable non-
disabled person is clearly bartered for a variety of very desirable
socioeconomic and sociopsychological characteristics of a disabled
person.
3. Under the influence of the increasing spirit of cynicism, some
adult disabled people may opt for sexuality with or without rudiments
of intimacy. For many disabled people, sexuality at a price may be the
easy way out of the frustrations involved with trying to establish an
intimate relationship. Other disabled adults may limit satisfaction of
their needs for intimacy to same- and cross-sex friendships without
venturing into the more agitated seas of love or marriage.
In the case of congenitally disabled people, additional problems
and difficulties have to be faced because they often have not been
able to develop the usual interpersonal skills and test them through
friendships, play, and dating. This lack of socialization into intimacy
Social and Psychological Parameters of Friendship and Intimacy 47
with nondisabled as well as other disabled people is extreme for
those congenitally disabled who were institutionalized at an early
age, for those who had to attend a special school because their disa-
bility seriously interfered with their ability to communicate, or for
those with a stigmatized visible disability such as facial deformity.
For this category of disabled people, it is very comfortable and
seductive to stay within their own community, where they are
wholeheartedly accepted by people with whom they share many life
experiences and where the probability of establishing intimate rela-
tionships is greater, and that of being rebuffed is smaller, than in the
outside world.
This greater comfort, acceptance, and ease in finding friends and
dates is, however, outweighed in the minds of many disabled people
(with congenital as well as disabilities acquired later in life) by the
realization that they are confining themselves to a "disabled ghetto."
As has been true for ethnic or racial ghettos, its members as well as
the larger society recognize that achievements and accomplishments
within the ghetto do not count for much within the larger society and
that, therefore, the only real accomplishments are those outside the
ghetto. Disabled people know that having been able to establish
intimate relationships, including marriage, within the ghetto-like
community of people with the same type of disability is not rated a
significant success. They may, therefore, develop different strategies
to deal with this:
1. They may define as valid only intimate relationships
achieved with nondisabled people. Thus either they avoid establish-
ing intimate relationships with "their own kind" altogether by not
interacting with other similarly disabled people, or they may inter-
mittently find refuge in the disabled community when they are try-
ing to recover from rejections and hurt from the nondisabled world.
Although there are no exact data as to how many people within each
kind of disability follow this strategy, there are some indications that
there is a large number of them or even the majority (Higgins, 1979;
Weinberg, 1968).
2. Some, though they define as satisfactory only intimate rela-
tionships with nondisabled, for a variety of reasons, do not dare or do
not have an opportunity, or simply never succeed in establishing
intimate relationships. They resign themselves to staying within the
community of similarly disabled people. There are no data as to how
many disabled people fall into this category or in what ways they
reconcile themselves to the situation.
48 Societal Contributions to Discrimination
3. Some disabled people may define all intimate relationships
as equally important, their satisfactoriness and significance depend-
ing on the nature of the relationship rather than the disabled or
nondisabled status of their friend or partner. Such disabled people
have been able to transcend their disability and view themselves and
others as human beings — attractive or unattractive, interesting or un-
interesting, compatible or incompatible — personalities, rather than
disabled or nondisabled. More research is needed to understand
what the factors are that help disabled (and nondisabled) people
view the world in this way. Research in other types of prejudice,
specifically, gender prejudice, has shown that a low degree of dog-
matism significantly associated with a high degree of positive self-
esteem are the most important variables distinguishing those who
can view men and women in nonstereotyped ways and who can
establish intimate, cross-sex friendships (Safilios-Rothschild & Wong,
1979). Most probably, the same variables would be important for
disabled and nondisabled people's ability to see and relate to each
other in a nonstereotyped, nondichotomous fashion.
4. Some disabled people choose to relate mainly to similarly
disabled people, limiting their social life, their friendships, and their
loves to the disabled community. They usually claim that their iden-
tification is only with the disabled world and that they measure their
success and feel happy according to how well they do within the
disabled world (Higgins, 1979). In recent years the ideological en-
thusiasm of the disabled people's social movement has helped dis-
abled people redefine themselves and project a new image of them-
selves which is in no way inferior to that of nondisabled people.
Thus their social movement can provide disabled people with much-
needed self-confidence and self-esteem and the option to identify
truly with other disabled people and not just those with the same
disabilities. This may lead to their staying primarily within the dis-
abled community as a transitory strategy until they are able to find
new strategies to renegotiate the interpersonal basis of relationships
with nondisabled people not solely on the conditions of the nondis-
abled (Safilios-Rothschild, 1972).
In the late 1970s it has been evident that the emerging social
movement of the disabled has been making a significant impact.
Although there has been no systematic study tracing the develop-
ment and sociopsychological influences of the movement, there are
many indications that the social structure has begun to change to-
ward the accommodation of disabled people's needs for leisure, fun,
and a variety of interpersonal relationships, from friendship to mar-
Social and Psychological Parameters of Friendship and Intimacy 49
riage. Individuals or groups of disabled people have begun to travel
much more extensively, both nationally and internationally, testing
the limits of barriers to disabled people and compiling useful travel
guides for others (Annand, 1977; Couch, 1977; Weiss, 1977). Increas-
ingly, television networks have responded to the new voices raised
by disabled people by presenting during prime viewing hours sev-
eral movies in which even severely stigmatized disabled people
such as the mentally retarded are shown falling in love and display-
ing mixtures of tenderness, love, devotion, and everyday difficulties
similar to those of everyone else. Even Mademoiselle magazine, in
1978, carried a fashion article in which a very attractive college stu-
dent in a wheelchair was shown wearing different sets of clothes
fashionable and appropriate for a girl in a wheelchair.
Is Marriage the Pinnacle of Intimacy?
There is considerable evidence that many disabled people with visi-
ble or congenital disabilities have been able to marry. Even mentally
retarded people have married, although their marriage rates have
been significantly lower than those for the entire population. Far
fewer married retarded people have had children because of semi-
voluntary or clearly imposed eugenic sterilization (Bell, 1976; Hall,
1974; Floor, et al., 1975; Henshel, 1972). In the case of the mentally
retarded, women have had a better chance to marry normal or men-
tally retarded partners than have men, because mental retardation
affects men's ability to be successful breadwinners. Mentally re-
tarded women, on the other hand, could fulfill, in its extreme, the
traditional stereotype for women!
However, as marriage in itself has ceased to be considered the
pinnacle of success in intimacy, disabled people will be able to ex-
plore among different avenues for the satisfaction of their intimate
needs and find the ones that best fit them. With the reinforcement of
their social movement and ideology, they will have to find their way
out of segregation by settling their own conditions and by renegotiat-
ing interpersonal relations with other disabled persons as well as
with the nondisabled.
References and Bibliography
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50 Societal Contributions to Discrinnination
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1977.
Bell, N. IQ as a factor in community lifestyle of previously institutionalized
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Cahnman, W. J., The stigma of obesity. The Sociological Quarterly, 1968,
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Cahnman, W. J. The stigma of overweight — six autobiographies. Unpub-
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Couch, G. R. Charting the unknown for those to follow. Rehabilitation/
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5 Claiming the Self
The Cripple as
American Maie
Leonard Kriegel
When I was first asked to contribute to this book, my initial reaction
was to question exactly what I might be able to contribute to a text
about problems faced by Disabled People as Second-Class Citizens.
I am not a physician; I am not a psychologist; I am not a sociologist; I
do not work in the health-care field. I am, however, an individual
who has lived 35 of his 46 years here on earth as a cripple, a word
which I prefer to either handicapped or disabled, each of which
seems to me a euphemism for the realities facing us. And I have,
during a writing career that covers 20 years, written rather exten-
sively about my own struggle with disability. It occurred to me that
the only valid perspective I could bring to this text remained what I
had pulled from the rage, fury, and pride — and I ask here not your
indulgence but the empathy of your own pride — of having survived
as a cripple in America. For if I have, in my own eyes, anything to
boast of before my fellow men, it is that I have endured — and that I
know the price that my endurance has demanded of me.
Both as a writer and as a teacher of literature, I have long since
felt that perhaps the most powerful lines I have ever read were those
God addresses to Moses in Chapter 3 of the Book of Exodus. Our
purpose is not, I assume, to seek heaven's solace. But I will quote
two verses from that chapter. Moses has been ordered by God,
speaking through the burning bush, to go to Egypt and free the
Israelites in bondage there. From the text, we can infer that Moses is
less-than-eager to undertake the mission. And the following interest-
ing exchange takes place at this point:
13 And Moses said unto God, Behold, when I come unto the children
of Israel, and shall say unto them. The God of your fathers hath sent me
unto you; and they shall say to me. What is his name? What shall I say
unto them?
52
Claiming the Self: The Cripple as American Male 53
14 And God said unto Moses, I am that I am: and he said, Thus
shalt thou say unto the children of Israel, I am hath sent me unto you.
Now I have included this passage because I believe that in
God's answer to Moses we discover the unequivocal reality behind
all of our excursions into human psychology, the very essence of
what we somewhat glibly refer to as The Human Condition. For
each of us seeks to create a meaningful /, one who has been stamped
with his own distinct individuality. One is almost tempted to write
that our relationship with God is one of perpetual envy, for God
alone among us can absolutely and interminably identify the / he
embodies as belonging to him alone. It is the kind of affirmation we
seek in the lives of those men and women we assume exist beyond
our capacity, beyond our habits and virtues and will — but not beyond
our needs. For like God, each individual stakes his claim to an iden-
tifiable I that is his and his alone.
Of course, it is a tentative claim. It exists within the confines of a
world man is never truly at home in, a world he must shape even as
it shapes him. It is a man's capacity as an individual that is always
being tested, his ability to face those obstacles that stand in front of
him, to accept them as the inevitable burdens of a life he is in the
process of living. Everywhere, we seek to affirm the separate self,
the identifiable / who possesses the strength and courage to with-
stand whatever tests lie in wait for him. And no one, we soon dis-
cover— a discovery that never ceases to amaze me — has a greater
right to claim that / than the man who has wrested his sense of
himself from the very condition which declared his existence as a
man at an end. No one can claim the prerogatives of a manhood that
has been seized from adversity in quite the same manner as the
cripple can.
That the individual who must struggle hardest to declare himself
a man should become the very embodiment of manhood is a typi-
cally American paradox. But the cripple is forced to affirm his exis-
tence by pushing himself beyond those structures his handicap has
created. On a certain level it can be argued that this is what all men
and women do. After all, what else do we mean when we speak of an
individual's consciousness of his or her own humanity? But in a
culture which places such stress on the physical — however uncom-
fortable it may still be with the body — the cripple's insistence on
pushing beyond the restrictions imposed by his own physical limita-
tions is an observable reality, that kind of violent joining together of
opposites that is so characteristic of modern life.
I do not mean by this that the cripple is envied by other Ameri-
54 Societal Contributions to Discrimination
cans. Far from it. Were we to survey our fellow Americans, they
would understandably reject the idea that the position of the physi-
cally handicapped is to be envied. And none of us would argue with
that. Ask any man who must contemplate the prospect of spending
his life in a wheelchair whether he would exchange that fate for a
normal pair of legs, and the answer would, obviously, be a ringing
affirmation. Ask me whether I would give up these braces and
crutches to which I have been obligated ever since I was taught how
to manipulate them as a boy of twelve, and I would accept without a
moment's hesitation. To insist on one's capacity, to be willing to
undertake the everyday risks that the cripple must confront simply in
order to meet the world on relatively equal terms, even to enjoy the
triumph and liberation that an earned mobility bestows on one — we
can accept all of this and yet still hunger after what we are not. A
man can believe in his own courage; a man can assume that his
existence has been paid for by a price that would have broken so
many others; a man can think of himself as having confronted his fate
like Jacob wrestling with his angel. But a man cannot lie to himself.
The very title of this book, Disabled People as Second-Class
Citizens, speaks of the everyday realities we are forced to face. It is
not only our knowledge of those barriers the outside world imposes
on us, however, that makes us think of our citizenship as second-
class. It is also the inevitable pressure of what we know we have
missed, of those elements in our lives whose significance is multi-
plied a hundredfold by contact with an imagination which knows
what they are but which has not yet possessed them. For the hungers
are invariably personal, the joys not tasted are joys not tasted by me.
Those desires are my desires. And they are not abstract. However
simple they may seem to others, they remain what I want. However
absurd and childish they may be labeled by the world, they remain
what I can feel myself reaching out for and touching in my imagina-
tion. And I find myself enraged that those the distinguished social-
psychologist Erving Goffman has labeled the "normals" should be
able to touch them so readily, so unconsciously. For my condition
tells me that a man should earn what he possesses. And however
successful the world may deem me — and in the world's eyes, I am a
man who has, to use a phrase I believe should be cauterized from
our language, "overcome his handicap to live a normal life" — I still
know what it is I want. I stand before you a 46-year-old college
professor, the author of a number of books, the father of two splendid
sons, the husband of a lovely wife, the recipient of a number of
academic awards and honors — and a man whose dreams at night still
make him alien to what that world defines as success. How shall I
Claiming the Self: The Cripple as American Male 55
tell my "normal" colleagues that I still dream about running on the
beach, that even at the age of 46 I desperately want to swing a
baseball bat once again, that I lie awake at night wondering what I
would do with normal legs, only to discover that what I want to do is
banal in the eyes of the normal. I want to run on the beach, I want to
kick a football, I want to jump rope, I want to ride a bike, I want to
climb a mountain — not a metaphor for achievement, just a real hon-
est-to-God mountain — I want to ride a horse. I want to shop differ-
ently; I want to make love differently; I want to walk to the movies
differently; I want to drive differently; I want to know my children
differently. The list could so easily be extended, but perhaps it is
enough to note simply that I want to know the world differently.
These are not great feats of the imagination. They do not call for
special skills or training. But they are what I want, what I have never
tasted or else have tasted so long ago that the memory itself has
become one with the desire, locked in a permanent embrace. And
such memories, along with such desires, frame all that is absent from
my existence at this present time.
We hear so much today about authenticity, the need to create an
individuality which is both specific and personal. All through Amer-
ica, men struggle not only to define themselves but to avoid being
defined by others. And yet, when the cripple looks around himself, he
discovers that he is defined from the outside. Our complaint against
society — a complaint that lies at the very heart of this book — is not so
much that society ignores our presence as that it ignores our reality,
our sense of ourselves as human beings brave enough to capture our
destinies against formidable odds. It is in this respect that the cripple
and society are at war with one another. If we were satisfied to be
objectified, to be infantilized on telethons, we would probably dis-
cover that this America has a great deal of time for us, a great deal of
room for us in a heart it wishes to hear praised. Our problem is not, to
use Ralph Ellison's metaphor for the black man in America, that we
are invisible. It is, rather, that the terms of our visibility have been
created not by us but by those who will see what they want to see
rather than what is there. If we look at our image in literature, what we
discover is not ourselves but our condition — or at least what is taken to
be our condition — which is portrayed for the world. We discover that
our true selves, our inner lives, have been auctioned off, that we have
been made palatable rather than real, that the world will continue to
wish to see us as victim or demon, the object of its charity or the object
of its scorn. Of one thing, however, we can be certain — the world will
turn a blind eye and a deaf ear to our real selves until we impose those
selves on the world. Years ago this recognition led me to write an
56 Societal Contributions to Discrimination
essay entitled, "Uncle Tom and Tiny Tim: Some Reflections on the
Cripple as Negro." There has been, I believe, a hopeful change from
the analysis that essay offered of the cripple's position in society.
What I hinted at — that the cripple might help to establish the terms of
his existence in normal society only when he seized hold of the power
to define who he was and where he was going — has increasingly been
transformed into the terms of our situation today. It is not Tiny Tim
whom we seize as a metaphor for our existence today. It is, rather, the
authentic self, the / that has been wrested from adversity whom we
now claim as our embodiment.
It is exactly here that the cripple discovers that society is more
than a bit dubious about his achievement. It may even be afraid of
that achievement. It is one thing for society to recognize our need for
care: as a matter of fact, it is in meeting that need that society is most
comfortable with us. It honors what it views as our suffering. But it
retreats from what it sees as our growing ability to define our inner
lives, to say who and what we are. For society seems to need that
ability to define us in order to be comfortable with us. When I re-
turned from a two-year stay in a state rehabilitation hospital at the
age of thirteen, my mother was immediately asked by the neighbor-
hood chairman of the March of Dimes (this was in 1946, before Dr.
Salk's vaccine) to go from door to door to collect in the annual drive.
Both he and my mother assumed that she would be more effective in
this capacity than anyone else in our neighborhood, for she had been
given a kind of subaltern authenticity as a mother of a cripple. Her
presence was expected to remind our normal neighbors that she had
earned their charity. Another individual going from door to door
would simply not have been as "authentic."
That same society which was then at home with giving its lar-
gesse to my mother is now at home giving to muscular dystrophy
telethons, to religious attempts to help children, to the efforts of such
organizations as the Shriners to support hospitals. Perhaps the mo-
tives of all these groups and organizations are honorable. But they
also serve to illustrate how society defines the cripple by seeing only
his condition. And society manages to do this while keeping itself
oblivious to the feelings it inspires in him. In January 1968 I was
vacationing in Florida with my wife and children. While driving
down the coast, we passed a large shopping center. Strung out on a
huge white marquee in bold black letters was a sign that read: "Help
Crippled Kids! See Stalin's Limousine! Donation: $1.00."
Now this is the material of absurdity, the kind of material that
can be dealt with effectively by a novelist with the talents of a Kafka
or a Nathanael West rather than by a social scientist, for it is a denial
Claiming the Self: The Cripple as American Male 57
of the human. But it is also a form of definition society itself accepts.
In fact, it is the definition that the cripple discovers stands in his
path as he pushes toward the possibility of authenticity. He wants
his realizable self; society wants to be made to feel good. Added to
the cripple's problems as he reaches out for his authenticity is the
resistance he must offer to what society tells him is properly his. He
is, he discovers, a man whose conception of himself must be inflicted
on society. His task is not only to say who he is but to point out to the
world that his agony is not to be marketed as if he were a perpetual
child being told what to do and how to behave. The authenticity he
must insist on is what he and he alone — not his physicians, not his
nurses, not his friends or relatives, but he alone — has created for
himself. For no one knows the cost of his existence as he does. No
one has lived with the intimacy of his fears as he has. And no one
better understands that the selfs true authenticity can be taken only
from the selfs resistance. It is not, finally, the crippled kids who will
offer their souls for sale to feed our national need for charity. It
would be better for them to laugh Stalin's limousine out of existence.
It is to his powers of resistance that one must address his admira-
tion when he speaks about the situation of the cripple in America.
This is particularly true now, when the mass of American men seem
so torpid and confused. In fact, the cripple's situation may be a proto-
type for the general situation of men in this country. If part of me
still hungers to perform those mundane tasks that define most lives,
another part — the braver part, I suspect — insists that the mark of a
man is that he permits himself to be formed by the very accidents
that have made him what he is, that he can only be called a man
when he openly embraces his situation. We have, after all, been
formed by the passion with which we view the potential of our indi-
vidual lives. In this the task of the cripple is to be brave enough to
face what the normal can choose to ignore. The normal has that
option, or at least he thinks he has, but those of us who have con-
sciously chosen to take a chance at an existence pulled from disease
or accident learn early on that we are isolated. Our condition turns
out to be more intense than the rest of the world can afford to admit.
Our isolation is massive. We cannot seize hold of those supports that
give balance to the life of the normal. Society views us as both pariah
and victim; we are pitied, shunned, labeled, analyzed, classified, and
categorized. Sooner or later we are packed in the spiritual ice of a
sanitized society in the hope that we can somehow be dealt with in
some even more sanitized society of the future. Society will permit
us everything — other, that is, than the right to be what we are — for
without that right, it knows that we are nothing.
58 Societal Contributions to Discrimination
Society is uncomfortable with us. It is not uncomfortable with
what it can do for us. Not at all. That sign in the shopping center was
created by a giving society. Those telethons featuring a semi-
maniacal Jerry Lewis are responded to by men and women who
think they are charitable. Those well-meaning Shriners interviewed
at halftime during the East- West football games they sponsor — let me
remind you of the game's motto: "Strong legs run so that weak legs
can walk" — do not believe that they have tampered with our reality.
Disease and injury bring out the self-consciously charitable, even the
sanctimonious, in other men. What we cripples discover we share is
not so much a physical condition — the differences among us are far
more pronounced than differences between white and black, gentile
and Jew, Italian and German — as it is the experience of having been
categorized by the normals. In their view we possess only a collec-
tive presence — for in their view we cannot be permitted a sense of
individuality. If we prove ourselves capable of defining our own
lives, then what explanation can they offer for their failure? If a
cripple can break with the arbitrary paralysis of his existence, can
say, "I am that I am because I have earned the right to be what I
am," then what can a normal offer as an excuse for his failure? And if
the cripple can point to the primacy of his performance, then how
does the normal account for his failure? Finally, if the cripple can
discover in his own combat with circumstance not only survival but
even a form of heroism, then where does that leave the normal?
I do not wish to suggest that one is better for having suffered
disease or disability. That is quite obviously nonsense. All that I
mean is that we have no choice but to establish the terms of our
existence, the boundaries of our authenticity, and in doing so we
inevitably discover that society is not going to be too happy with us.
Only by turning our visible stigma into a source of strength can we
escape categorization by the normals. Only in this way can we define
ourselves, speak to a world whose hostility is clothed in indifference
and say, "Here I am because here I have created what I am." We can
hold up the ragged ends of our existence and demand that the nor-
mals match our honesty. In this way we can point out how others
might confront their own authenticity in a time of conformity, a time
during which the very idea of an authentic self has more or less been
buried beneath one dulled variation after another on the theme of
doing one's own thing.
What makes the cripple's situation so difficult for the normal to
deal with is that the control of one's own destiny — even having a
voice in one's own destiny — is at best problematic for anyone. But
the cripple approaches that destiny knowing that the element of
Claiming the Self: The Cripple as American Male 59
chance is even greater in his life than it is in the Hfe of the normal.
Having already witnessed the power of accident, he knows that if
the reconciliation of one's needs with the world's actualities can
lead to maturity, it can also lead to madness and despair and sui-
cide. Under the best of circumstances, maturity is temporary. But
under those circumstances dictated by disease and accident, it is
what a man is condemned to live with. It is not the cripple who
needs to be told, as Sartre phrases it, that "man is nothing else but
what he makes of himself!" Every step we take, every breath we
draw, every time we make love, cross a street, drive a car, we live
out the terms of that argument. The existential condition about
which so much has been written is the situation to which fate has
so closely condemned us. The terror and joy of performance is ours.
The desire to measure, to prove capacity, haunts the cripple's every-
day life. And all the time, the image of what one was crashes
against the fantasies of what one might have been, for if what Sartre
writes is true — and I obviously believe it is — then an unvoiced cor-
ollary to his argument is that the man who creates his authentic self
against great odds runs the risk of what used to be called, in a more
religious time, the sin of pride.
There is a point at which the acceptance of one's own wound,
the living on an everyday basis with that internal enemy who, as the
late Ernest Becker wrote in The Denial of Death, constantly "threat-
ens danger," leads to a certain haughtiness. Perhaps it even points to
an unspoken contempt for those who have not been called on to
prove their capacity as we have been forced to prove our own. After
all, everything the cripple does, every act of love or hate, every
victory he claims or defeat he suffers, has been pulled from the fire.
The true secret that he must acknowledge is the extent to which he
can take pride in his performance and impose a meaningful presence
on the world. When a man matches himself against his own destruc-
tion, it is virtually inevitable that the normal's frame of reference
comes to seem comic, perhaps even banal. A man who lives on inti-
mate terms with pain as a condition of daily existence must listen
with a certain amazement to a sportscaster praising the courage of an
athlete who earns a great deal of money for his aching knees.
But even as he acknowledges the magnitude of his achievement,
even as he learns that he has earned through discipline and persist-
ence what others hunger after, the cripple is reminded that the nor-
mal can diminish his reality. He is trapped by reality itself Although
a man may choose to create an authentic self out of his defiance of
accident or disease, he cannot remake the truth of his existence. No
matter what he demands of himself, dead legs cannot run. He can
60 Societal Contributions to Discrimination
make of injury an acquisition; he can transform his handicap into a
symbol of his endurance; he can accept his existence as an act of
defiance; but he cannot change what has happened to him. He
knows that he is now in a position in which he must recognize that
his life is to be different in its essentials from the lives of normals, for
he has been tested and discovered to be not wanting. He has come
through, and he has learned the value of coming through. He has
learned to look on the stigma itself as something he has somehow
earned, to admit to having been set apart. This process has been
powerfully captured by Karl Shapiro in a poem about a soldier who
suffers an amputation during World War H. The soldier must at first
struggle to accept the loss of part of his body. He must learn to adapt
to life without the leg, even as the life he possesses becomes itself a
defiance of the wound. Here is a stanza from Shapiro's poem, "The
Leg":
Later, as if deliberately, his fingers
Begin to explore the stump. He learns
shape
That is comfortable and tucked in
like a sock.
This has a sense of humor, this can
despise
The finest surgical limb, the dignity
of limping,
The nonsense of wheelchairs. Now he
smiles to the wall:
The amputation becomes an acquisition*
But even such acquisitions can be taken away by the society that
seeks to define the cripple, for that society remains intent, let us
remind ourselves, on shrinking his reality through its definition of
his function and reality. Even the effort he makes to live honestly
pinches his sense of his own courage, his ability to live on his own
terms. What we remember is embedded in what we are. The first
book I ever wrote was an autobiography. The Long Walk Home.
What I set out to do in that book was to capture my life for myself.
My purpose was to tell the story of one individual's struggle with
polio, without either sentimentality or false piety — and without bra-
vado, too. I was going to write a book that depicted the war between
*Karl Shapiro, Collected Poems 1940-1978 [New York: Random House, 1979], p.
38. Reprinted by permission of Random House, Inc.
Claiming the Self: The Cripple as American Male 61
myself and the virus that had cut me off from my past, and I was
going to make it into a document that would match my conception of
what I had done with faultless honesty. It was a large ambition for a
young writer. But it was mine, and I knew that if I were not capable
of matching my fate with my honesty, I would ultimately fail as a
writer and fail as a man. When I first set down to shape the materials
of my past into a book, I assumed that what would prove to be
difficult were those scenes in which I relived the pain, the sense of
helplessness and loss of dignity that the onset of disease produces.
But these scenes proved easy to handle. They virtually wrote them-
selves. What proved difficult were those small defeats that made me
sweat as I relived them. I remember writing a scene in which I took
a young woman home from a date. I was eighteen; she was perhaps a
year younger. Embracing the young woman in order to kiss her good
night — which was all that custom permitted on first dates in 1951 — I
slipped and fell. It is a memory that should at this distance be em-
braced with comic relief, but it still infuriates me, as it did when I
wrote The Long Walk Home some 16 years ago. If I am alive 16 years
from now, it will undoubtedly infuriate me then, for I still want to
right the balance for that moment, to make the scene more comfort-
able, more in keeping with the image of the man I know as myself.
As I wrote that scene, I could feel my rage at the injustice of my fate
spilling out of the typewriter. I hated not myself, but the circum-
stances which had trapped me from that moment.
I recently reread The Long Walk Home. It still seems to me an
honest book, but I can now also see how it speaks of my own limita-
tions of vision, of how when I wrote it I was still viewing my life as
society told me it should be viewed, as the story of a man who has
"overcome a handicap to live a normal life." The last two lines of the
book read as follows: "At the cost of legs, I had won a self How
much cheaper a price could I have expected to pay?" As I recall
these lines now, I wince, at least internally, for in a lifetime during
which I have written my share of sentences better forgotten, I can
think of no sentence as singularly untruthful as that last. I would give
a great deal to be able to take it back today. If I have learned nothing
else, I have learned how truly expensive all such "victories" are,
how fragmentary, how terribly short-lived, and how demeaning to
the legitimate and painful demands I had to make on myself in order
to survive to call the price cheap. Nothing I had ever before done,
and, I suspect, nothing I will do in the future, has cost me more or
has taken more out of me in my own quest for authenticity.
Fate manages to burrow beneath our illusions and to remind us
of who we are and what we are. A few months after The Long Walk
62 Societal Contributions to Discrimination
Home was published, I found myself living in a small Dutch fishing
village. I was on a Fulbright year abroad, and I was, I confess, feel-
ing rather smug about my life and rather vain about that self I had
fashioned, like a man who draws for a five card inside straight in
poker and discovers to his amazement that he has pulled a royal
flush instead. I had my Fulbright, my book, my tenure at the college
I still teafih at today, my wife, my son, my "success" if you will. (As I
speak to you in such possessive terms, I begin to feel like Mister
Kurtz in Conrad's Heart of Darkness, although my "success" was not
as ambitious as his. Still, it was mine.)
One day I was walking on the concrete embankment that paral-
leled the North Sea beach oi Noordwijk aan Zee, the town in which
we lived. My two-year-old son was walking with me, as he fre-
quently did, holding onto the pinky that jutted out from the handle of
my crutch and trying to keep up with his father's swing-through gait.
Suddenly, he let go of my pinky and waddled on down the concrete
incline of the embankment to the beach. He walked about 10 yards
or so into the sand and then stopped. He waved to me, then waited
for me to follow him. And I did follow him, for I was filled with a
sense of selfhood captured that was so absolute that the illusion of
power was greater than anything I had ever before experienced. It
was an illusion so vivid that it literally devoured the reality of my
past. I can phrase it in no other way than that I knew that I could run
again, could pick my son up on my shoulders, cast braces and
crutches aside, and run against that North Sea wind — a normal
American father and his laughing American son — just like in the
movies. For one brief moment the braces and crutches did not exist,
the legs were not dead — even as I made my way down to the beach
on those same braces and crutches.
Man makes himself, but he never remakes his circumstances,
except, of course, in his fantasies. When my crutches hit the sand,
reality once again hit me. My crutches sank, which is what crutches
do on beaches when you try to walk. Not only would I not run with
my two-year-old son against the wind, I was barely able to walk as I
had been walking a minute earlier on the concrete. I had to give up
the illusion, to allow it to be ripped from me and be replaced by a
rage so pure, total, and all-devouring that it must have been that one
step away from madness we speak about so often. It was a terrifying
moment, for my mind was capable of such violence that I could have
passed through that Dutch fishing village like a whirlwind of ven-
geance for my thwarted dreams. Instead, my wife arrived at my side
and I retreated once again to the concrete.
No, the price is never cheap. And that authentic self is never
Claiming tlie Self: The Cripple as American Male 63
really won. It recedes from the cripple's grasp, just as it can never
really be won by the normals. It can be won only in fantasy, for
fantasy creates the language of its own fulfillment. There a two-year-
old boy can possess the patience and wisdom of Job. But when fan-
tasy evaporates, we discover the final lesson that accidents and dis-
ease insist on. That lesson, too, must be absorbed, for no one knows
better than the cripple that dignity as a man consists, finally, of the
terms of the struggle he declares. No one knows better than the
cripple that to live consciously is to live honestly, to acknowledge
that his authentic self has been borrowed for a brief moment, bor-
rowed for its own sake, and borrowed for the sake of all those sons he
has left waiting on the beach.
6 Sex and Disability
Are They Mutually Exclusive?
Mary D. Romano
Society creates handicaps. While most disabilities are products of birth
and accident, the debilitating impact on a person's life often results not
so much from the "disability" as from the manner in which others de-
fine or treat the person. (Gordon, 1974, p. 1)
In the interface between society and the individual there exist
tacit expectations of behavior. These pre- and proscriptions affect
every area of life; society expects the child to attend school and
the adult to work, and, in turn, society is expected to provide
opportunities for children and adults to do those things. Such be-
havioral expectations extend to areas of social and sexual interac-
tion as well. In our society, for example, new acquaintance is
sealed in a handshake; men, despite feminism, are generally ex-
pected to court women; adults are expected to marry and to func-
tion sexually to procreate as well as to use sexual activities as
means of expressing feelings, of recreation, and of power and sub-
mission. These are prescribed behaviors. When the individual in
the society happens to be disabled, however, that individual is
confronted with a different set of prescriptions, many of which, in
fact, are proscriptions, and nowhere is this more evident than in
the areas of sexuality and social interactions.
What this chapter attempts is an exploration of those pre- and
proscriptions. It will place them in an historical perspective, and it
will explore avenues of remediation, for it is the posit of this chapter
that it is time for those with disabilities to move out of second-class
citizenship.
The author wishes to acknowledge her appreciation to Dr. James V. Romano for his
editorial assistance.
64
Sex and Disability: Are They Mutually Exclusive? 65
Defining Sexuality in the Disabled
Sexuality as meant here is the complex aggregate of attitudes and
behaviors that serve to express the manliness or womanness of each
individual (Romano, 1973b). The attitude component of an individ-
ual's sexuality includes the person's self-image, the person's inter-
nalized values and expectations from his or her religious and ethnic
backgrounds, and the degree to which the person has internalized
those societal values and expectations that relate to manness and
womanness. The behavioral component of sexuality includes a per-
son's social interactional skills, the action and verbal manifestations
of his or her attitudes, and sexual functioning which is here defined
as the erogenous and genital components of sexuality (Trieschmann,
1978). Sexual functioning is thus a part of sexuality but not its whole;
sexual functioning involves the physiological components of sexual
expression, the logistics of sexual expression (coital positioning, con-
traception, varieties of sexual pleasuring, and so forth), and the pur-
poses of sexual expression, among them procreation, recreation, and
communication.
By disability, I refer in this chapter to a variety of conditions and
illnesses — sometimes obvious, sometimes not immediately visible —
that affect the way a person's body works. Thus a disability may
involve difficulty walking, difficulty hearing or seeing, difficulty me-
tabolizing sugar; it may involve a systemic malfunction, as in the
mitotic processes of malignancy, and the therapeutic sequellae, be
they surgical, chemotherapeutic, or radiological. Whatever the spe-
cific nature of a disability, however, it can be said that all disabilities
have in common an impact on the individual in the way that individ-
ual lives. The peace, or lack thereof, that each individual who has a
disability strikes with his condition may vary, and the acknowledg-
ment of the condition becomes an issue in the person's self-image.
"Mutually exclusive," the issue raised in this chapter's title, is a
descriptive term derived from probability theories in mathematics
and logic; it describes states of events incapable of simultaneous
existence (Hart, 1953; Kemeny, Snell, and Thompson, 1961). In
looser parlance, mutually exclusive refers to incompatibility, to that
which is inharmonious or antagonistic. Thus the question raised in
the title of this chapter is whether sex and disability can exist simul-
taneously. Simplistically, the immediate answer is yes, based on the
following syllogism: self-image is part of sexuality; disability is part
of self-image; therefore, disability and sex are related. More germane,
perhaps, would be to phrase the question in terms of antagonism or
66 Societal Contributions to Discrimination
incompatibility, but to address that issue, one must consider the rela-
tionship between sex and disability as a process rather than a state.
From early times, disability has been perceived as a sign of
moral weakness, as punishment for such weakness, and as justifica-
tion for social discreditation (Goffman, 1963). This is seen in our
earliest mythology. In the Greek myth of Hephaestus, for instance,
Hephaestus was bom lame as a punishment to his mother, Hera, for
quarreling with his father, Zeus, and his mother, in disgust, threw
Hephaestus out of heaven, in effect socially abandoning him because
of his disability. Similarly, the Greek hero Philoctetes suffered a
wound which grew so foul-smelling and painful that his companions
could no longer stand the stench and his cries of pain; Agamemmon
ordered that Philoctetes be abandoned in a deserted area, this action
again illustrating the social isolation and discreditation that accom-
pany disability (Tripp, 1970).
Even modem definitions of stigmata suggest a relationship be-
tween stigmata as marks indicative of disease or abnormality and as
marks or tokens of infamy. This conceptual relationship has tradition-
ally been socially manifested in patterns of social isolation of the
handicapped. Institutionalized or hidden in back bedrooms, the dis-
abled individual has historically been expected to accept social mi-
rasmus as his due.
Language as an Impairment
The abrogation of personhood by virtue of physical handicap is
clearly illustrated in the colloquial language of disability. Cripple,
the lay label for an individual with a handicap, is a word not only
suggestive of pervasive incompetence but is devoid of gender, and
its use deprives its recipients of maleness or femaleness. Words such
as cripple define their recipients by focusing on what is wrong rather
than what is right with a person so that in addition to gender depriva-
tion, which has significant and obvious implications in sexuality, the
handicapped individual is deprived as well of all other identifying
characteristics, both physical and characterological: tall/short, fair/
dark, kind/mean, intelligent/stupid, generous/stingy, and so on.
It should be noted that this form of labeling is not confined to
those whose experience with disabled people is limited. Health pro-
fessionals use a form of deprivational labeling as well, and it, too,
although more semantically sophisticated and specific, works toward
the same effect as does its lay counterpart. Thus the health profes-
sional refers to an individual as an amputee, a cardiac, a diabetic, or a
Sex and Disability: Are They Mutually Exclusive? 67
quadriplegic, and this label is used to define the person to whom it is
applied.
If language is a mirror of society and culture, then it follows that
implicit in society is the expectation that physical deviance sub-
sumes other aspects of personhood and, to a considerable degree,
negates them. However isolated people with handicaps and their
families live in society, this societal expectation is often internalized
by the disabled individual himself and by his family as well.
The implications of this in terms of the relationship between
sexuality and disability are generally profound. Among them are the
following:
1. To be disabled is to be asexual, or at best, half a person, with
the remaining half asexual.
2. The disabled person should not be interested in anything
sexual.
3. Disabled people are dependent and therefore childlike, and
thus they require protection both "for their own good" and "for the
good of society"; implicit in the latter is that if people with handi-
caps are permitted to function sexually, they will breed more handi-
capped people who will "burden" society.
4. Penile-vaginal intercourse ending in orgasm is the only form
of "real" sexual function, and everything else is called "foreplay,"
suggesting, of course, that these other forms of sexual activity pre-
cede something else and are not in themselves "real" sex. When a
disabled individual is unable to engage sexually according to these
rules, the conclusion is that the disabled person cannot possibly have
a satisfying sex life and might as well not even try.
5. If a nonhandicapped person has a sexual relationship with a
disabled individual, it must be because the able-bodied person can-
not find anyone else.
Exclusion of the Excluded
The belief that disability is a denial of personhood, sexual and other-
wise, is not only manifested semantically but behaviorally in the al-
teration of usual interactive behaviors. Staring at a disabled individual
is one such common behavioral manifestation, and intrusiveness is
another; thus when the handicapped individual ventures out of his
house, he becomes an object of visual attention and is considered fair
68 Societal Contributions to Discrimination
game for such personal questions as What's wrong with you? How did
it happen? Have you always been this way? Questioning is not the
only form of intrusiveness, however. Suggestions and accusations —
the former ranging from "You don't really want to go there, do you?"
to recommendations of faith healers and the latter including impreca-
tions of parental malfeasance and divine retribution — are frequently
experienced by the handicapped individual, as is unsolicited help.
Interactive behaviors such as these are virtually unique to those with
disabilities and in our culture would be defined as highly socially
inappropriate between able-bodied strangers. In that sense these be-
haviors are exclusionary, in that they demand that disabled people
accept inappropriate interactions which are societally defined as un-
acceptable. This interactive model has an impact on the handicapped
person's sexuality in many ways; it provides continuous validation for
a belief in his "less than" status, forces him repeatedly to decide the
degrees to which he will be self-revelatory and assertive, and denies
him opportunity for reciprocal social interaction on an adult-adult ba-
sis. This interactive model requires constant internal attitudinal and
external behavior struggles for disabled people to maintain a sense of
personhood, competence, and desirability.
Inherent in this kind of interaction is the presumption that dis-
abled people are children, that is, incompetent, needful of a measure
of kindly protection coupled with firmness, and cognitively undevel-
oped. Behavioral manifestations of this presumption are pervasive in
sociosexual issues for disabled people and are often accompanied by
patronizing attitudes which put the handicapped individual in a one-
down, defensive posture in relationship to others. One of the classic
social interaction examples of this is the situation in which a dis-
abled and an able-bodied individual are dining together in a restau-
rant, and the waiter asks the able-bodied person what the disabled
individual would like to eat; the response hierarchy in this predica-
ment ranges from capitulation, in which the able-bodied person does
the ordering, to highly assertive, in which the disabled person bawls
out the waiter. In the more sexual sphere, examples of this presump-
tion might be that of depriving a handicapped person of sex educa-
tion (What do you need that for?), of remarking on the "cuteness" of
flirtatious behavior in a young disabled man or woman, or of denying
contraceptive counseling to a handicapped woman (or, conversely,
sterilizing her against her will).
Indeed, the assumption that disability is a tragedy — that to be
disabled is to be sad, to be pitied, to be unusually courageous in the
face of adversity — is one of the most exclusionary concepts in soci-
ety. It seems obvious to say that people live with or in spite of
Sex and Disability: Are They Mutually Exclusive? 69
handicaps and that, in fact, almost everyone will face disability as
part of the life process. Yet reminders of our own frailty, rather than
stimulating the empathy and behavior that we being able-bodied
ourselves would want, more typically cause us to deny.
There is, of course, historical precedent for this, not only in the
Greek myths mentioned earlier but also in biological and medical
reality.
Medical, Physiological, and Sociological Developments
Until relatively recent years, many people who suffered disabling
illnesses and injuries died with dispatch. Measles and poliomyelitis,
common cripplers in the first half of this century, are now entirely
preventable as the result of the development of vaccines; meningitis
and other infectious processes are now treatable by antibiotics, the
existence of which were unknown before World War II and which
did not enter public usage until the late 1940s. Such medical ad-
vances have not only altered the careers of the sick but have made
possible a degree of healthy survival previously unknown to man-
kind. In a related way, techniques of rapid medical evacuation and
treatment, developed by the military for use in managing the
wounded in combat situations, have been broadened to use in cases
of civilian injury. Many major medical centers, for instance, now
have helicopter landing pads, so that severely burned or newly spi-
nal cord injured individuals can be quickly moved from the site of
injury to medical care facilities. Such evacuation techniques, cou-
pled with medical advances, have changed the course of disability
by decreasing fatality as an expected outcome.
With this improvement in survival statistics has come increased
knowledge and understanding of the physiology of disability so that
heretofore routine complications of disabling conditions are rede-
fined as preventable. Pressure sores (decubiti), upper respiratory in-
fections, urinary tract infections, and renal calculi, all of which were
once considered normal sequellae of mobility handicaps, are illustra-
tive of this.
Medical and physiological advances such as these have been
paralleled by sociological changes. Until the 1970 census, for ex-
ample, there was no national attempt to ascertain the number of
people with disabilities in the United States, and even in the 1970
census, the outcome was contingent on respondent definition, so that
a person with diabetes or cancer or degenerative joint disease who
did not identify himself as handicapped would not be counted as
70 Societal Contributions to Discrimination
such. It must be presumed, then, that the actual number of people
with handicapping conditions in the United States remains underre-
ported. Similarly, the census reflects the number of people over the
age of 65 but may well inaccurately reflect the reality that many
disabling conditions are most prevalent in an elderly population.
Aside from these demographic issues, however, there has been a
remarkable change in society's acceptance of an increased openness
in dealing with sexuality. The so-called sexual revolution of the
1960s was manifested in the publication, and social as well as medi-
cal acceptance, of Masters and Johnson's research; in increased pub-
lic attention to sexualized civil rights issues (e.g., feminism, gay
rights, abortion); and in the social acceptability of overt as well as
covert sexuality in media. This social redefinition of sexuality as a
legitimate part of being, and of sexual functioning as a right and a joy
rather than a duty has altered the courses of intrapersonal expecta-
tion and interpersonal relationship. And to the handicapped popula-
tion, it has offered possibilities for research into the impact of various
illnesses and disabilities on sexuality. It has also provided an oppor-
tunity to acquire social parity in terms of sexual issues and sexual
being.
The outcome of these medical, physiological, and sociological
developments vis-a-vis the handicapped population and sexuality
has seemed to focus especially on those handicaps that are visible
and that occur primarily in a young and/or young adult population,
perpetuating in effect the mistaken idea that sexuality and sexual
functioning are not of concern to a mature or aging population. The
last decade has witnessed numerous articles, books, plays, and films
relating to sexuality and spinal cord injury, among the more recent
latter, for example: Coming Home, The Other Side of the Mountain,
Parts I and II, and Whose Life Is It Anyway? All of this output has
successfully conveyed the highly valuable concept of person first,
disabled second. What is missing, however, is material that relates to
the sexuality of the middle-aged or elderly handicapped person or to
the individual whose disability is not readily and visually apparent;
these people are thus left behind in an assumption either of asexual-
ity or of nonconcem. That, as a result of successful media portrayal,
spinal cord injury has cachet is sociosexually isolating not only to the
quadri- or paraplegic but to amputees, those with rheumatoid and
osteoarthritis and collagen diseases, those with cardiovascular and
endocrinological disorders, people with malignancies, and so forth.
Love Story, the most notable popularized account of someone with
an invisible disability, manages to convey the dying person's need
for intimacy but fails to deal realistically with the relationship be-
Sex and Disability: Are They Mutually Exclusive? 71
tween the disabling condition, in this case leukemia, and the suf-
ferer's sexual being; the heroine is young, pretty, articulate, and
witty to the end, attributes which make her an object of sympathy
and pity rather than empathy.
In actuality, the person with an invisible disability such as heart
disease, diabetes, or cancer may feel a constant stress in mediating
between the disease and the sociosexual presentation of self (Goff-
man, 1959, 1971). For people with these disabilities, the issue of
passing versus telling is a constant one. In First, You Cry, her book
about mastectomy and its impact on her being, Betty Rollin writes of
her need to announce her condition at dinner parties. Her anger, her
anxiety, and the anxiety engendered in others by her proclamations
and self-revelation are very much facts of her life and of the lives of
others with similar health problems (Rollin, 1976). The dinner guest
with hypertension who requires a salt-free diet and the dinner guest
with diabetes who needs a sugar-free diet are hard-pressed not to
define themselves and be defined as "problems" in social interac-
tion. And in their sexual interactions lurk the questions of possible
rejection on the basis of infirmity if it is discovered, and of pity as a
motivating factor in the sexual relationship.
Cataloguing these issues and problems, however, requires con-
sideration of their resolution, and in order to consider remediation, it
is necessary to review the current state or process of the art of deal-
ing with sexuality and disability (Daniels, Cornelius, Chipouras, and
Makas, 1979; Robinault, 1978).
Remediation: Tlie State of the Art
The current state of the art reflects the integration of increased medi-
cal knowledge, increased information on the number/incidence/
nature of disabling conditions, the increased long-term survival of
handicapped people with their resultant growth of interest in qual-
ity of life issues, and societal attitudes. Also reflected is the impact of
consumerism, the extent of which has not been measured but which
promises to play a significant role in future remediation.
At the present time, programs relating to sexuality and disability
are directed primarily to adults and fall into two major categories:
therapeutic and educational. Included in the therapeutic approaches
are individual, conjoint, and group counseling, and surgical manage-
ment of genital function. The educational approach most docu-
mented is the Sexual Attitude Reassessment, a format designed to
desensationalize sexual issues and to enhance self-awareness.
72 Societal Contributions to Discrimination
Of the therapeutic approaches, direct, one-to-one counseling
seems to be the most prevalent. The proponents of this method de-
scribe the advantages of offering highly personalized attention to the
individual's needs, but this method also has several drawbacks. It is
time-consuming, reaches a small population, and depends for its effi-
cacy on both the consumer's ability to articulate his concerns and the
professional's ability to perceive the latent and manifest content of
these concerns and their implications for total functioning and the
professional skill to respond accurately and comfortably without mor-
alizing or temporizing (Hohmann, 1972). Conjoint approaches, in
which the handicapped person and his or her sexual partner are seen
together by a counselor or pair of counselors, are valuable in that
they deal with the sexual concerns of both the disabled individual
and the partner. However, these too are time-consuming, reach a
small population, and neglect the disabled individual without a sex-
ual partner whose concerns relate to the problems of making socio-
sexual contacts as well as knowing what to do in sexual situations
(Tomko, 1974).
Group counseling programs, usually bringing together people
with similar disabilities, have been developed in a number of reha-
bilitation centers (Eisenberg & Rustad, 1976; Holden & Meier, 1975;
Romano, 1973a; Romano & Lassiter, 1972). Advantages to this method
include economy of time, safety in that no one has to speak until
ready, familiarity (the bull-session concept), and the opportunity pro-
vided to model adaptive behavior. Disadvantages to this method can
be that in a given area there are not enough people with a common
bond to form a group and that a leader trained both in group leader-
ship skills and in sexuality and disability is not available.
Surgical management of sexual problems in the disabled has be-
come more common in recent years. In the past, sterilization through
vasectomy or tubal ligation was not uncommon and was, on occasion,
performed not because the handicapped person requested it but be-
cause the physician or the individual's family believed such a proce-
dure to be in the best interests of society, if not of the individual. In
light of recent legal action, it is to be hoped that sterilization will be
available to the disabled population on the same basis on which it is
available to the able-bodied, that is, voluntary rather than forced.
Surgical management of erectile impotence is a burgeoning form
of therapeutic intervention. The two most common devices in use are
the Small-Carrion penile prosthesis, a semi-rigid prosthesis which is
implanted bilaterally into the corpus cavernosa and which results in
permanent erection, and the Scott-Bradley prosthesis, which is a to-
tally implanted, hydraulically operated unit that permits its recipient
Sex and Disability: Are They Mutually Exclusive? 73
to control erection through a pump system (Berkman, 1979; Furlow,
1978; Lange & Smith, 1978; Melman, 1978; Small, 1978). Surgical
indications, long-term effects, and complications are still under study.
Clearly, however, such devices may help some men to cope more
effectively with the impact of their disabilities on sexual function
when they have access to such devices (Stewart & Gerson, 1976).
The Sexual Attitude Reassessment, as noted previously, is basi-
cally an educational model designed to desensationalize sexual
issues and enhance self-awareness. It makes use of an intensive time
frame in which a multimedia presentation of a variety of explicit
sexual activities is coupled with periods of small group discussion.
This model encourages an accepting, experimental attitude toward
sexual activity and can open communication between health profes-
sionals and handicapped participants, in so doing changing the rela-
tionship to a more collegial, collaborative one (Cole, Chilgren, and
Rosenberg, 1973; Halsted, Halsted, Salhoot, Stock, and Sparks,
1977). Its disadvantages are its expense, its limitation to a specific
setting in that it requires extensive audiovisual equipment and meet-
ing space, and its possibility of being used to the exclusion of other
approaches, with the implication that it is a form of therapy rather
than an educational approach.
What is striking about all these approaches is the absence of mea-
surement in a behaviorally specific way of program effectiveness or
outcome, of cultural variables, and of therapists' knowledge and skills.
Typically, these approaches are offered under the auspices of health
care delivery settings, notably within the Veterans Administration
(VA) Hospital system and at teaching medical centers such as the
Texas Institute for Rehabilitation and Research, the Moss Rehabilita-
tion Hospital in Philadelphia, and the University of Minnesota's hos-
pitals. Help in resolving problems related to sexuality and disability
through the provision of factual information, counseling, and educa-
tion is rarely offered outside such settings, that is to say, in family
agencies, schools, community mental health settings, or in private
doctors' offices. The location of existing programs, in fact, gives evi-
dence of being person-dependent, and program existence appears to
be without particular regard to disabled population loci. The person-
dependency of programs refers to the unfortunate reality that many
programs seem to depend on the presence of a person committed to
maintaining the program through personal endeavor and skill. When
that person leaves, the program tends to disappear (even if it was
previously well-integrated with other programs) (Cole, 1978; Zirin-
sky, 1979). Equally unfortunate is the latter program reality, that of
existence without regard to population loci. Relatively few ongoing
74 Societal Contributions to Discrimination
programs exist in major population centers or in areas where people
dependent on the fixed income of Social Security or veterans benefits
can find moderately priced housing and reasonable costs of living.
Those handicapped people who live in areas far from centers where
therapeutic or educational programs exist must do without services.
If in fact the relationship between sexuality and disability is a
process, changing with specific knowledge and general attitudes, then
this relationship is a mutable one. It is open to remediation and en-
hancement, with goals of parity in social acceptance, sexual opportu-
nity, and equal access to educational and therapeutic programs that
relate to sociosexual interaction. Change being inherently anxiety
producing, its impetus will come, at least in part, from the people who
feel trapped by the past and the present. These people will include
helping professionals who will use their facilitative skills to develop
therapeutic programs and who will work at attitude change. Included
as well will be politicians and policymakers concerned with maintain-
ing political power by responding to the needs of their disabled con-
stituency. The media can be tapped to portray disabled individuals
realistically, not as automatic heroes or victims but as people. Educa-
tors will be involved through the mainstreaming of handicapped chil-
dren with able-bodied children and through the development both of
sex education curricula for all children and of courses relating to sexu-
ality and disability in professional schools of medicine, nursing,
physical and occupational therapy, rehabilitation counseling, and so-
cial work. Ultimately, if remediation is to occur so that to be handi-
capped is no longer to be asexual, consumers — men and women with
illnesses and disabilities and their families — will advocate for their
rights to acceptance, to educational and therapeutic services, and to
sociosexual equality in interpersonal relationships.
References and Bibliography
Berkman, A. Issues in the use of penile prosthesis. Paper presented at the
Annual Convention of the American Psychological Association, New
York, 1979.
Cole, S. Personal communication, 1978.
Cole, T., Chilgren, R., & Rosenberg, P. A new programme of sex education
and counseling for spinal cord injured adults and health care profession-
als. Paraplegia, 1973, 11, 631-638.
Daniels, S., Cornelius, D., Chipouras, D., & Makas, E. Who cares? A hand-
book on sex education and counseling services for disabled people.
Washington, D.C.: George Washington University, 1979.
Eisenberg, M., & Rustad, L. Sex education and counseling program on a
Sex and Disability: Are They Mutually Exclusive? 75
spinal cord injury service. Archives of Physical Medicine and Rehabili-
tation, 1976, 57, 135-140.
Furlow, W. Surgical treatment of erectile impotence using the inflatable
penile prosthesis. Sexuality and Disability, 1978, 1, 299-306.
Goffman, E. The presentation of self in everyday life. Garden City, N.Y.:
Doubleday, 1959.
Goffman, E. Stigma: Notes on the management of spoiled identity. Engle-
wood Cliffs, N.J.: Prentice-Hall, 1963.
Goffman, E. Relations in public. New York: Basic Books, 1971.
Gordon, S. Sexual rights for the people. . . who happen to be handicapped.
Syracuse, N.Y.: Center on Human Policy, 1974.
Halsted, L., Halsted, M., Salhoot, J., Stock, D., & Sparks, R. A hospital based
program in human sexuality. Archives of Physical Medicine and Reha-
bilitation, 1977,58, 409-12.
Hart, W. College algebra. Boston: D. C. Heath, 1953.
Hohmann, G. Considerations in management of psychosexual readjustment
in the cord injured male. Rehabilitation Psychology, 1972, 19, 50-58.
Holden, B., & Meier, R. Sex and coffee — a sexual counseling approach. Ar-
chives of Physical Medicine and Rehabilitation, 1975, 56, 543.
Kemeny, J., Snell, J., & Thompson, G. Introduction to finite mathematics.
Englewood Cliffs, N.J.: Prentice-Hall, 1961.
Lange, R., & Smith, A. A comparison of the two types of penile prosthesis
used in the surgical treatment of male impotence. Sexuality and Disa-
bility, 1978, 1, 307-311.
Melman, A. Development of contemporary surgical management for erectile
impotence. Sexuality and Disability, 1978, 1, 272-281.
Robinault, I. Sex, society and the disabled. New York: Harper & Row, 1978.
Rollin, B. First, you cry. Philadelphia: Lippincott, 1976.
Romano, M. Sexual counseling in groups. /owrnaZ of Sex Research, 1973, 9,
69-78. (a)
Romano, M. Sexuality and the disabled female. Accent on Living, 1973, 18,
27-34. (b)
Romano, M., & Lassiter, R. Sexual counseling with the spinal cord injured.
Archives of Physical Medicine and Rehabilitation, 1972, 53, 568-572.
Small, M. The small-carrion penile prosthesis: Surgical implant for the man-
agement of impotence. Sexuality and Disability, 1978, 1, 282-291.
Stewart, T., & Gerson D. Penile prosthesis: Psychologic factors. Urology,
1976, 7, 400-402.
Tomko, M. Facility role models. In National Paraplegia Foundation (Ed.),
Sex: Rehabilitation's Stepchild. Chicago: National Paraplegia Founda-
tion, 1974.
Trieschmann, R. The psychological, social, and vocational adjustment in
spinal cord injury: A strategy for future research. Washington, D.C.:
Rehabilitation Services Administration, 1978.
Tripp, E. The Meridian handbook of classical mythology. New York: New
American Library, 1970.
Zirinsky, J. Personal communication, 1979.
//
Institutional and
Bureaucratic Contributions
to Discriminatory Practice
Society has successfully created institutions and bureaucracies that
are unresponsive to the needs of the disabled and embody its preju-
dicial feelings about them. This has been accomplished by establish-
ing a transportation system that is inaccessible, by creating a medi-
cal community that, intentionally or not, remains ignorant of and
unresponsive to the special medical needs of this group, and by
endorsing architectural designs that effectively exclude the disabled
from free and equal access. Institutional and bureaucratic attempts
to provide benevolently for this population have, in fact, created a
compensation system that prevents them from entering society's
mainstream. Once established, these institutional and bureaucratic
entities have assumed a life of their own and, as is the case with any
life form, make alterations or modifications only to assure their own
survival. In this section nearly all the authors acknowledge that
change is occurring to help reduce these institutional and bureau-
cratically created barriers. Whatever the origins of this change —
Zeitgeist, expediency, or plain charity — a shift is occurring in the
way in which they are willing to make accommodations for a dis-
abled population.
The purpose of this part is to examine the means by which
discriminatory practices of specific institutions and bureaucracies
existing within the context of the larger social system are exercised.
It has been designed to investigate the extent to which institutional
and bureaucratic systems work in the direction of the disabled's
deterioration rather than his rehabilitation. Such analysis must pre-
cede the presentation of remediative programs, although many of
the chapters in this section do suggest ways in which discrimination
can be combated. The chapters in this section attempt to achieve
objectivity in their descriptions of current practice by trying to keep
77
78 Institutional and Bureaucratic Contributions
theoretical interpretations of facts apart from biases. Sctiroeder
(Ctiapter 7) reviews tine status of legal enactments which have been
designed to guarantee justice for the disabled and suggests amend-
ments to the Civil Rights Act of 1964 which could assure the dis-
abled an opportunity for full participatory citizenship in American
society. Lifchez and Davis (Chapter 8) consider architectural bar-
riers confronted by the disabled and attempts to create a barrier free
environment. Dunham (Chapter 9) examines the impact on and con-
sequences of inaccessible transportational systems for the disabled,
while Sims and Manley (Chapter 10) present the argument that pen-
sion and compensation programs as currently conceived present
disincentives to total integration into the community. Falconer
(Chapter 11) delineates obstacles often encountered by the disabled
person in his independent search for responsible medical care. Fi-
nally, Goldiamond (Chapter 12) considers the family's role in the
rehabilitation process and discusses discriminatory practices di-
rected toward the family with a disabled member.
The extent to which these institutional and bureaucratic systems
can be altered is a question that will ultimately be answered only
with the passage of time. If, however, the change we currently ob-
serve is not accompanied by change in the larger social context (the
subject of Part I of this text), the permanency of our present efforts
will be as futile and elusive as the labors of Sisyphus.
7 The Law Speaks
Disability and Legai Practice
Oliver C. Schroeder, Jr.
In America, law is the people's tool to achieve justice. The people
make the law directly, through public service as jurors in civil and
criminal cases, through petitioning by initiative or referendum the
enactment of legislation, through the exercise of the First Amend-
ment rights to speak and write freely or to assemble peaceably by
which public opinion can be molded into action for the public good.
Indirectly, the people also make laws by voting for their legislators,
executives, and, in some state governments, judges. Legislators in
turn enact statutes; executives then issue regulations under the stat-
utes; judges finally interpret the statutes and regulations in specific
legal cases involving aggrieved human beings who seek to use the
law to acquire justice. Justice is the goal, and law must always be
made and used to achieve that goal.
What is American justice? Justice is: (1) a belief by an individual
citizen that his or her relationship with all other persons in the
United States is founded on personal integrity, a common respect
one for the other; (2) a belief that he or she can seek and find a life of
fulfillment, happiness, and dignity. American justice is based on a
relationship between and among human beings which exalts fair-
ness; equality of opportunity; justness in economic, political and so-
cial relationships; and rational reason in categorizing differences be-
tween and among persons. Fair, equal, just, rational, and reasonable
are human concepts which explain the true meaning of American
justice. Therefore, fair, equal, just, rational, and reasonable are the
basic requirements for the law's operation as it struggles to effect a
true justice for all persons in America.
How goes the struggle for the handicapped or disabled as he or
she seeks to achieve the inalienable legal rights guaranteed to each
person by the Declaration of Independence — the right to life, liberty,
and the pursuit of happiness? Has justice been achieved? Is the law
fashioning American society to enhance the disabled's opportunity
79
80 Institutional and Bureaucratic Contributions
for a just, fair, equal, rational, and reasonable relationship to his or
her fellow citizens? These matters demand attention not only to de-
termine where we are but, more importantly, where we must go.
Law for the handicapped or disabled person really came into
prominence with the Congressional enactment of the Rehabilitation
Act of 1973 (29 U.S.C. Sec. 701, et seq.). Prior to that time, legislation
of benefit to the handicapped or disabled did exist at both federal
and state levels, but the philosophical concept of these laws was to
aid the handicapped or disabled because he or she was different
from the "normal" citizen. Public funds were appropriated and pub-
lic programs were executed on the basis of helping second-class per-
sons to lead better lives. These laws for the disabled were conceived
to be acts of charity, not laws to enhance the lives of normal citizens.
So the 1973 act with its 1974 amendments did not merely re-
shape old laws as tools for the handicapped and disabled. The 1973
act has provided a new tool, a new concept. The disabled person is
conceived to be a first-class citizen. Any attempts to make him or her
a second-class citizen through discriminatory acts is now to be ille-
gal. We are not to help a second-class citizen to live a little better
through acts of legal charity, as past laws were designed to do. We
are to recognize the disabled as first-class citizens and to protect and
serve them in that noble relationship by legally prohibiting the dis-
criminations that relegate them to second-class citizenship.
The federal act of 1973 used the power of the public purse to
create that protection and security. Sec. 504 of the act states:
No otherwise qualified handicapped individual in the United States, as
defined in section 706(b) of this title, shall, solely by reason of his
handicap, be excluded from the participation in, be denied benefits of,
or be subjected to discrimination under any program or activity receiv-
ing Federal financial assistance.
The legislative history emerging with the 1974 amendments explains
further this new law tool:
Section 504 was enacted to prevent discrimination against all handi-
capped individuals regardless of their need for, or ability to benefit
from vocational rehabilitation services, in relation to Federal assistance
in employment, housing, transportation, education, health services, or
any other Federally-aided programs [italics added].
What has been expressed by this new law which can explain
today's legal struggle to achieve justice for the disabled? The legal
The Law Speaks: Disability and Legal Practice 81
literature has exploded with scholarly writings seeking to explain
and develop new uses for this tool, to identify growing needs for the
better justice due the disabled citizen. For those interested, the bib-
liography's titles will suggest specific areas of concern and interest
in the new laws for the old problems confronting the disabled citi-
zen. These old problems coalesce in a simple question: How can I, a
disabled person, secure my legal right to be a first-class citizen so
that I can relate to my fellow-citizen in a fair, just, equal, rational and
reasonable manner?
Legislative enactment of the 1973 Rehabilitation Act was origi-
nally conceived to present in plain meaning the rights of the handi-
capped. Executive promulgation of more specific regulations to
implement the statutory rights was considered not necessary. The
federal judiciary in the case oi Cherry v. Mathews, however, ordered
the Department of Health, Education and Welfare to issue executive
regulations under the legislative statute. These regulations appeared
in 42 Federal Register 22676-22685.
Once the 1973 Rehabilitation Act was fully perceived, other fed-
eral statutes and appropriate agencies took cognizance of the new era
of legal rights for the handicapped to assure and encourage first-class
citizenship. A listing of these other legal efforts will aid in more fully
understanding the legal action generated by the 1973 Rehabilitation
Act:
1. §2122 of the Tax Reform Act of 1976. I.R.C. § 190 grants a tax
credit for the removal of architectural barriers to disabled persons
access and has implementing regulations in Treas. Reg. §§7.190-
1.190-3.
2. §51 of the Tax Reduction and Simplification Act of 1977
recognizes a handicapped aspect of granting a tax credit for hiring
new handicapped employees who have completed government
programs.
3. The Department of Labor's Office of Federal Contract Com-
pliance Programs (OFCCP) has issued regulations on §503 of the
Rehabilitation Act. 41 Code of Fed. Reg., §§60-741.1 to .54 (1977)
Executive Order No. 11, 758, 39 Fed. Reg. 2075 (1974).
4. The Vietnam Era Veterans' Readjustment Assistance Act of
1974 has spawned regulations on the handicapped. 41 Code of Fed.
Reg. §60-250.1 to .54 (1977).
5. The Small Business Administration has regulations on the
Rehabilitation Acts §504. 43 Fed. Reg. 9488-9493.
82 Institutional and Bureaucratic Contributions
6. The Treasury Department has regulations for §122 of the
State and Local Assistance Act of 1972, as amended, 31 U.S.C.A.
§ 1242(a) (i) (West Supp. 1977) and Treas. Reg. 51.50 has regulations
to prohibit discrimination to otherwise qualified handicapped. 42
Fed. Reg. 18362-18372 (1977).
7. The Urban Mass Transport Act of 1964, as amended, 49
U.S.C. §§1601-1613 (Supp. V, 1975) has also produced regulations.
41 Fed. Reg. 18233(1976).
The speed of legal action on behalf of full citizenship for the
disabled leaves much to be desired, however. A quotation from U.S.
News and World Report (1979) reveals the dismal delay:
Only five of the 29 agencies affected have adopted regulations to imple-
ment the ban on discrimination against the handicapped in federally
aided programs. The newest rules, issued by the Transportation Depart-
ment on May 31, are seen by the disabled as much too weak. (p. 10)
New legislative dimensions were added in 1975 to the handi-
capped individual's legal rights to full citizenship. The Education for
All Handicapped Children Act, 20 U.S.C. §1405 (Supp. V, 1975) with
regulations in 45 Code of Federal Regulations §84. 11(a) (2) and the
Developmentally Disabled Assistance and Bill of Rights Act, 42
U.S.C. §§6001-6081 became law. Once again the basic concept was to
assure and encourage that mentally handicapped children were to be
blessed with full citizenship in the mainstream of American educa-
tion. As far as educationally possible, a mentally handicapped child
was to be in a common classroom with the child not mentally handi-
capped. Note that the Developmentally Disabled Assistance Act also
carries the crucial legal designation of "Bill of Rights Act." The law is
moving slowly but surely toward recognizing an inherent constitu-
tional right to full citizenship for the handicapped and disabled.
Numerous legal problems have emerged since the original 1973
act was enacted.
Confusion over the terms handicapped and disabled is serious.
Both are frequently used interchangeably in statutes, regulations,
and decisions. Technically, disabled refers to a medical condition.
Handicapped refers to an individual's status due to the disability.
Some preference is shown for disabled, because it reflects that the
person need not be considered as handicapped in his or her job
performance. In reality, both words are laden with negative values.
The law needs a term that can center more on the individual's capac-
ity and not his impairment.
The Law Speaks: Disability and Legal Practice 83
Difficulty in legally defining the handicapped person has been a
second serious problem. The original 1973 act provided this defini-
tion: handicapped individual means any individual who (a) has a
physical or mental disability which, for such an individual consti-
tutes or results in a substantial handicap to employment and (b) can
reasonably be expected to benefit in terms of employability from
vocational rehabilitation services. The emphasis on benefit by train-
ing really was inapplicable to several aspects of the Rehabilitation
Act, so the definition was supplemented in 1975 to read: A handi-
capped individual "(a) has a physical or mental impairment which
substantially limits one or more of such person's major life activities,
(b) has a record of such impairment, or (c) is regarded as having such
an impairment."
This broad definition was ultimately scrutinized by the U.S. Su-
preme Court in the very recent case of Southeastern Community
College V. Davis. The Court concluded in footnote 6:
A person who has a record of or is regarded as having an impairment
may at present have no actual incapacity at all. Such a person would
be exactly the kind of individual who could be "otherwise quahfied"
to participate in covered programs. And a person who suffers from a
limiting physical or mental impairment still may possess other abilities
that pennit him to meet the requirements of various programs. Thus it
is clear that Congress included among the class of "handicapped" per-
sons covered by §504 a range of individuals who could be "otherwise
qualified."
In contrast to this definitional problem, the legal definitions of
physical impairment (any disorder of the enumerated body sys-
tems— musculoskeletal, cardiovascular, etc.) and mental impair-
ment (any disorder based on mental illness, mental retardation, and
specific learning disabilities) have posed less difficulty in the law,
probably because these definitions are very broad. In contrast, state
laws are often much more specific and stringent in such definitions.
Severe difficulty in applying the 1973 Rehabilitation Act to pro-
tect a handicapped person's right to the education and employment
of his or her choice has emerged as the result of the recent landmark
decision cited above, Southeastern Community College v. Davis.
Excerpts from the syllabus of the case on the facts and the law are
illuminating:
Respondent, who suffers from a serious hearing disability and who
seeks to be trained as a registered nurse, was denied admission to the
nursing program of petitioner Southeastern Community College, a state
84 Institutional and Bureaucratic Contributions
institution that receives federal funds. An audiologist's report indicated
that even with a hearing aid respondent cannot understand speech di-
rected to her except through lipreading, and petitioner rejected respon-
dent's application for admission because it believed her hearing disabil-
ity made it impossible for her to participate safely in the normal clinical
training program or to care safely for patients. Respondent then filed
suit against petitioner in Federal District Court alleging, inter alia, a
violation of §504 of the Rehabilitation Act of 1973, which prohibits
discrimination against an "otherwise qualified handicapped individual"
in federally funded programs "solely by reason of his handicap." There
was no violation of §504 when petitioner concluded that respondent did
not qualify for admission to its program. Nothing in the language or
history of §504 limits the freedom of an educational institution to re-
quire reasonable physical qualifications for admission to a clinical train-
ing program. Nor has there been any showing in this case that any
action short of a substantial change in petitioner's program would
render unreasonable the qualifications it imposed.
(a) The terms of §504 indicate that mere possession of a handicap is
not a permissible ground for assuming an inability to function in a
particular context, but do not mean that a person need not meet legiti-
mate physical requirements in order to be "otherwise qualified." An
otherwise qualified person is one who is able to meet all of a program's
requirements in spite of his handicap. HEW's regulations reinforce,
rather than contradict, this conclusion.
(b) Section 504 does not compel petitioner to undertake affirmative
action that would dispense with the need for effective oral communica-
tion, such as by giving respondent individual supervision whenever she
attends patients directly or by dispensing with certain required courses
for respondent and training her to perform some but not all of the tasks
a registered nurse is licensed to perform. On the record it appears un-
likely that respondent could benefit from any affirmative action that
HEW regulations reasonably could be interpreted as requiring with
regard to "modifications" or postsecondary educational programs to ac-
commodate handicapped persons and the provision of "auxiliary aids"
such as sign-language interpreters. Moreover, an interpretation of the
regulations that required the extensive modifications necessary to in-
clude respondent in the nursing program would raise grave doubts
about their validity. Neither the language, purpose, nor history of §504
reveals an intent to impose an affirmative action obligation on all recipi-
ents of federal funds, and thus even if HEW has attempted to create
such an obligation itself, it lacks the authority to do so.
(c) The line between a lawful refusal to extend affirmative action
and illegal discrimination against handicapped persons will not always
be clear, and situations may arise where a refusal to modify an existing
program to accommodate the needs of a disabled person amounts to
discrimination against the handicapped. In this case, however, peti-
tioner's unwillingness to make major adjustments in its nursing program
The Law Speaks: Disability and Legal Practice 85
does not constitute such discrimination. Uncontroverted testimony es-
tablished that the purpose of petitioner's program was to train persons
who could serve the nursing profession in all customary ways, and this
type of purpose, far from reflecting any animus against handicapped
individuals, is shared by many if not most of the institutions that train
persons to render professional service. Section 504 imposes no require-
ment upon an educational institution to lower or to effect substantial
modifications of standards to accommodate a handicapped person.
Several federal lower courts have fashioned a modicum of consti-
• tutional legal protection to aid the handicapped person who has been
deemed unqualified for education or employment because of his or
her disability. An irrebuttable presumption has been created in the
law. When the handicapped person has been denied employment or
education, such denial is presumed to be based on illegal discrimina-
tion. The door of opportunity cannot be slammed in the face of the
handicapped. However, nothing in this legal doctrine of irrebuttable
presumption affirmatively aids the handicapped to walk through the
door. And often when he or she seeks to do so, discretionary decisions
by executive agencies legally can deny first-class citizenship rights.
Other constitutional protections such as the equal-protection
clause or the recognition of the handicapped as a suspect class being
discriminated against have not been utilized as yet by the law. Dis-
criminations based on race, sex, national origin, religion have all
been favored by the suspect-class doctrine and the equal-protection
clause. So if these persons are discriminated against, the law imme-
diately suspects illegal discrimination. There is an expressed feeling
in the law that race, sex, national origin, and religion discriminations
are rooted in pure prejudice. Handicapped discrimination has not
only prejudice but also is rooted in incapacity. This very view, how-
ever, is reason enough to apply a high and clear standard of scrutiny
for the handicapped. The law must focus away from the disability
and on the actual capacity of the individual.
Many legal cases are not filed in court because plaintiffs are poor
or are enured to discriminating treatment. Many lawyers shy away
from the litigation because the law is unclear, the legal standards are
obscure, and the expense is great. Gathering data takes enormous
amounts of man-hours. Often the needed proof is of a mechanical,
technical, or structural nature that calls for expert testimony in what
is technically or medically possible. After a showing is made, the
court's order may only be nominal — to sensitize the employer to the
problem, not to grant the disabled his or her desired relief.
The final legal decision has not yet been rendered on two impor-
tant points of law concerning the disabled. Can a disabled individual
86 Institutional and Bureaucratic Contributions
bring a private lawsuit to assert his constitutional, statutory, and
regulatory rights as a handicapped person? Must that person exhaust
all of his or her administrative legal remedies before bringing such a
lawsuit? A U.S. Supreme Court decision or a Congressional statute
clearly answering these two questions in the affirmative would be
most valuable.
The handicapped today have no legal right to affirmative action
to assure and encourage their equal opportunity to education and
employment. In the wholly private sector of American society un-
touched by federal tax dollars, the handicapped have at most mini-
mal legal rights.
In regard to the growing visability of disabled persons and the
public's growing awareness of the need to provide access for the
handicapped to public facilities one should consult Resource Guide
to Literature on Barrier Free Environments (Jan. 1977) published by
the Architectural and Transportation Barriers Compliance Board,
Washington, D.C. 20201.
For those persons interested in a source which specializes in the
litigation and legal problems of the handicapped contact The Na-
tional Center on Law and the Handicapped, 1235 Eddy Street, South
Bend, Indiana 46617.
Today legal concerns for the handicapped are channeling more
and more on the virtues of taking the word handicapped and insert-
ing it into the 1964 Civil Rights Act. The language of §504, Rehabili-
tation Act of 1973 is almost identical to the language in Title VI of
the Civil Rights Act of 1964 which assures protection for blacks in
federal programs. Title II of the Civil Rights Act could also be
amended to protect the handicapped person's access rights to public
accommodations. Title VII of the 1964 Act could guarantee employ-
ment rights for the handicapped. In short, the Civil Rights Act could
supersede the Rehabilitation Act of 1973 and related statutes. An
amended Civil Rights Act could prohibit discrimination in regard to
race, color, religion, sex, national origin, or handicap. This legal ad-
vance could be the cornerstone for a more potent legal right to assure
the handicapped or disabled an opportunity for full citizenship in
American society.
Bibliography
Access to buildings and equal employment opportunities for the disabled:
Survey of state statutes. Temple Law Quarterly, 1977, 50, 1067-85.
Cherry V. Mathews, 419 F. Supp. 922 (D.C. 1976).
Civil Rights — handicapped discrimination — private college required to pro-
The Law Speaks: Disability and Legal Practice 87
vide interpreter services for deaf student under Section 504 of the Reha-
bilitation Act of 1973. Cumberland Law Review, 1978, 8, 979-89.
Constitutional law — irrebuttable presumption doctrine — right of blind
teacher to take teacher's examination. Wayne Law Review, 1977, 23,
1295-1304.
Development of equal employment opportunity for the handicapped: An
overview and analysis of the major issues. University of Baltimore Law
Review, 1977, 7, 183-278.
Discrimination against the handicapped in federally funded state services:
Sub-part F of Rehabilitation Act regulations. Clearinghouse Review,
1978, 12, 339-44.
Employment of the handicapped — the Rehabilitation Act of 1973. 29 U.S.C.
Sec. 793 - Sec. 503, Duquesne Law Review, 1977-78, 16, 481-92.
Employment rights of the handicapped. Clearinghouse Review, 1977, 11,
703-12.
Ending discrimination against the handicapped or creating new problems?
The HEW rules and regulations implementing Section 504 of the Reha-
bilitation Act of 1973. Fordham Urban Law Journal, Winter, 1978, 6,
399-412.
Enforcing Section 504 regulations: The need for a private cause of action to
remedy discrimination against the handicapped. Catholic University
Law Review, 1978, 27, 345-63.
Foreword — The specter of equality: Reflections on the civil rights of physi-
cally handicapped persons. Temple Law Quarterly, 1977, 50, 944-52.
History of unequal treatment: The qualifications of handicapped persons as
a "suspect class" under the equal protection clause. Santa Clara Law
Review, 1975, 15, 855-910.
Historical overview: From charity to rights. Temple Law Quarterly, 1977,
50, 953-60.
Is the Constitution handicapped? Trial, June, 1978, 14, 52-55.
Law and handicapped persons: Achieving equality through new rights. /our-
nal, Kansas Bar Association, Fall, 1978,47, 181-9.
Potluck protections for handicapped discriminations: The need to amend
Title VII to prohibit discrimination on the basis of disability. Loyola
University Law Journal (Chicago), 1977,8, 814-45.
Rehabilitating the Rehabilitation Act of 1973. Boston University Law Re-
view, 1978, 58, 247-74.
Rights of the physically and mentally handicapped: Amendments necessary
to guarantee protection through the Civil Rights Acts of 1964, Akron
Law Review, 1978, 12, 147-63.
Southeastern Community College v. Davis, 47 L.W. 4689, June 11, 1969.
Symposium on employment rights of the handicapped. DePaul Law Review,
1978,27(4), 943-1148.
Toward equal rights for handicapped individuals: Judicial enforcement of
Section 504 of the Rehabilitation Act of 1973. Ohio State Law Journal,
1977, 38, 676-708.
U.S. News and World Report. June 25, 1979, p. 10.
8 What Every Architect
Should Know
Raymond Lifchez and Cheryl Davis
When confronted by some particularly inept handling of the design
of a building, making it inaccessible, have you wondered how the
architect could have been so negligent? What happened? Oversight,
economics, misunderstanding of the fundamental requirements of
accessibility? Or — it begins to dawn on you — was it a matter of per-
sonal willfulness? Did the architect survey the situation, know what
needed to be done, but could not bring himself to do it? Did he
avoid the real issues to be confronted by this particular design solu-
tion by diverting his attention to matters with more personal appeal?
Architecture as pure design has, in the last decades, become a
rubric behind which creative talents have sought new and daring
architectural forms, uncompromised by attention to human behavior.
In the practice of architecture as high art, the humanity constraint on
the design is seen as minor or negligible. Interestingly enough, the
results are not always poor and do satisfy a range of human needs.
But the question emerges: how ethical is it to practice this profes-
sion— licensed to build buildings and other places of assembly —
without a convincing demonstration of being intellectually and emo-
tionally grounded in the subject of people?
It is informative to take a moment to look at the attitude toward
the federal requirements when they were first enacted to regulate
access for the handicapped. Though some architects have begun to
awaken to their mandate, little overall progress toward the goals set
forth in the law has been made. Professional schools of architecture
are still reluctant to teach a perspective of disability to students, and
practitioners have expressed little enthusiasm for embracing this
cause. (It is so interesting to compare the profession's attitude toward
energy conservation — solar technology — which has been enormously
This article is drawn from a larger work "Architectural Design Education with the
Handicapped User in Mind" sponsored by the Exxon Education Foundation.
88
What Every Architect Should Know 89
positive and imaginative and the postion — or nonposition — -that has
been taken toward access.)
In 1977 the pulse of the profession was epitomized in a short,
thoroughly negative article devoted to the subject which appeared in
the San Francisco Bay Architects' Review (1977, pp. 12-13):
Protection of public safety and health keeps taking on an ever
expanding definition. Can public codes really serve everyone's special
needs and still be responsive to the general public's values? Provisions
to help the handicapped trip the blind where the curb is cut away. The
San Francisco State Student Union Building is forced to abandon alto-
gether some spaces that were approved but were inaccessible to those
in wheelchairs. What does this suggest for the fate of future preserva-
tion and reuse projects? Architects have used stairs as a design element
through history and are we now to outlaw them even where they are
integral in our old buildings, if they are open to the public? Let's hope
that the success of the handicapped lobby doesn't inspire the hay fever
sufferers to a similar program to require the defoliation of grass and
trees in public open spaces [italics added].
Clearly, the word was out that the physically disabled of the world
would, if they had their way, turn the environment into one giant
appliance with ramps and grab bars everywhere! And what, of
course, was not openly expressed was the fear that all those handi-
capped people who had until now stayed so nicely out of sight would
be free to compete for a place in the sun. How unseemly. And how
uninspiring to the designer.
What Every Architect Should Know
Access is not just another constraint on architectural design but a
major perceptual orientation — to humanity. To achieve it, architects
must confront a range of human issues for which there are no sim-
plistic architectural solutions. The first step in this process is for the
architect to learn how to be very self-aware so as not to (unconscious-
ly) stigmatize handicapped clients — be they the physically disabled,
the elderly, or even children.
Renovating society's house, which is one way to perceive the
built environment, is a profound work. To restructure the environ-
ment so that it responds better to the needs of all requires that a
significant number of people — not only architects but clients and
managers and all others who are concerned with the build environ-
ment— re-evaluate their thinking. All must come to believe that an
90 Institutional and Bureaucratic Contributions
environment which is more responsive to the needs of "real people"
is not only possible but desirable. Designers operate within a politi-
cal context, and to implement real change they must be more sen-
sitive and forward thinking than others. The architect must be
prepared to point out to others that the new standards and code
provisions intended to ensure that buildings become accessible to
and usable by people with disabilities should not be perceived as
unusual but only the latest requirements placed by consensus on the
environment. The architect as visionary must remind others that ar-
chitecture reflects how society feels about itself, that this is a dy-
namic process, and that architecture is always a major expression of
societal aspirations and ideals.
This has not been the case, however. Disabled people have
hailed these laws affecting new building with something resembling
a fanfare of trumpets. Designers, by and large, have responded to
them with hostility. Economics, building codes, technologies, all are
seen as valid constraints, if not altogether pleasing, but this one is
different. The concept that the built environment should respond to
people's needs, that it should not diminish, humiliate, or unnecessar-
ily reduce a person's capacity of living in the world, is often attacked
as a fetter to productivity, an enemy of architecture as high art. There
are millions of disabled people in the United States, yet the feeling
is widespread among designers that the new standards are the result
of a small and vociferous cabal of disabled people and a few well-
intentioned advocates.
Bridging the gap between the law and practice is where archi-
tects are today, and the struggle has begun to produce some reason-
able buildings. It has become perfectly clear in this process that one
cannot convince people by putting a codebook in their hands, nor
does one produce accessible design with the code alone. Small
wonder that the conscientious designer feels hemmed in and even
confused by a statistical approach devoid of professional goals.
The promulgation of accessibility codes may be seen, to some
extent, as an attempt to generate quickly an environment that — if not
beautiful and visually exciting — at least responds to some of people's
personal needs and does not deprive them of their civil rights. It
represents a short cut. In the long run, however, the way to produce
an environment that neither excludes disabled people nor makes
them uncomfortable is to include in the designer's thinking that
along with everything else an architect must know must be added a
more profound approach to people, their behavior, the things they
bring to their environment and by which they interpret it.
There are a number of ways to get at this problem, which needs
What Every Architect Should Know 91
to be tackled both in the education and practice of architects. Curi-
ously, since architects teach architecture students, the effort that
needs to be made is even more important. Let me explain.
A central theme in teaching students architectural design is that
of client accommodation. It is against a perspective of the client
(flesh-and-blood characters or ones created for the role) — their way of
life, values, expectations — that the design is judged as suitable. None-
theless and oddly, this theme of the client, central as it is to teaching
students to become professionals, is the one least articulated, least
developed as a teachable subject. Unlike other architectural subjects
about which certain standards have emerged among schools, there is
no such consensus in schools about how people — the clients — fit into
the process of designing the built environment. But obscuring this
vital subject obscures the very context in which design is grounded
and thus makes all other standards of evaluation dubious. If a design
is not a suitable accommodation, no matter what it may look like or
how it is constructed, does it meet its societal purpose? The profes-
sion has not taken this issue on in a serious manner.
One way to offer the designer, in education and in practice, in-
sight into the social and psychological dimensions of the relationship
of the nonaverage user to the built environment is, quite simply, to
expose the designer to representatives of that user group. Through an
empathetic approach, the designer quickly loses his stereotypes and
begins to get a feel for the actual substance of another person's life, a
person whose story may be very different from the designer's own but
whose feelings and responses may be readily understood. A common
result of the designer's authentic effort to enter into the subjective
experience of the disabled person and into the social and historic
context of disability is heightened responsiveness to disability-related
issues and, more importantly, a respect for the intent underlying the
codes, standards, and criteria.
Workshops where one temporarily "tries on" a disability consti-
tute attempts to give the designer an entry into the subjective experi-
ence of disability. Trying on a disability for a day offers the designer
a sense of the physical issues involved, but it often backfires, as it
can generate so much anxiety that the designer overreacts, unable to
understand or even believe that any but "supercrips" venture out
alone at all. Trying on fails to offer the designer any sense of the way
in which the environment affects, feeds, and is sustained by social
and cultural prejudices and expectations. A more powerful tool for
dealing with these issues meaningfully is autobiography.
Autobiography can be used to obtain an understanding of the
individual in an environmental context. It is a way of approaching a
92 Institutional and Bureaucratic Contributions
person's life as an environmental history, conveyed through discus-
sion and personal anecdote. The person telling the story may share
experiences of the houses she has lived in, the schools attended, the
places worked in. The feelings which emerge convey to the designer
an interpretation of the environment very different from what he or
she may expect. For example, stairs function objectively as a means
of vertical circulation. Yet when a wheelchair user talks about living
upstairs (as in one of the vignettes in this chapter), a complex and
intriguing picture emerges. The stairs become a stage on which cer-
tain things may happen. Indeed, the environment becomes both a
theatre for human drama and a Felliniesque director which feeds the
actors their lines. The stairs are not merely physically difficult: they
are a source of family conflict and profound emotional discomfort;
they are a signpost saying, "Disabled people excluded." Going
through such distress day after day is devastating, but disabled
people do it all the time. Through autobiography the architect and
the student designer can begin to understand that for millions of
people the existing built environment is a harsh and unforgiving
place which both limits their lives and diminishes their perceived
capacity to function in the eyes of society.
In architectural practice, consulting, and teaching, the authors
have found the life experiences described by Ms. Davis to be power-
ful in changing people's perceptions. In a certain way, they seem
softly discursive, but they are packed with the kinds of insights,
subjective reactions, and information that must be shared between
disabled persons and designers if the latter are to become truly sen-
sitized to the issues and difficulties facing the disabled user in the
environment. And we mustn't discount the softly discursive style, for
herein lies the human presentation which is very difficult to ignore.
A Disabled User's Perspective
My sensibility is shaped by disability as much as by the society, econ-
omy, culture, and times in which I live. I could tell you the bare facts
of my life, but they would tell you little about me. To know me as one
whose consciousness has been profoundly shaped by the experience
of disability, you must loosen your grip on the everyday world of your
objectivity and enter the realm of subjective experience.
In the objective world, you would learn that I went to a special
school. In the subjective realm, you would learn what it felt like for
me every morning as the bus drove into the schoolyard, past the sign
at the front door which read. School for Crippled and Deformed
What Every Architect Should Know 93
Children. In the objective mode you would not know how that sign
stabbed me to the core five days a week, how different it made me
feel. For me, the sign meant that society labeled me "other," and as I
was being taught that I should be "happier with my own kind," I
was also learning that able-bodied people did not consider me their
kind.
When disability is reduced to the need for grab bars and wide
doorways, it becomes a subject of little interest, relegated to the
technician or practitioner. The social theorist, the historian, the psy-
chologist most often do not regard disability as a fertile subject for
investigation. The myth of objectivity blinds us to a whole realm of
human experience which cries out for serious study. The "children
of crisis" are blacks, they are women, they are children. They are not
disabled people. It is as if the study of disability were reduced to
vocational counseling or rehabilitation medicine. Imagine confusing
gynecology with the study of women in society, or dermatology with
the study of racism!
Disability is a social idea as much as it is a physical fact. Our
conception of what constitutes an appropriate social niche for dis-
abled people affects the way we create our environment. Our con-
ception of disability is partially based, however, on the way in which
our predecessors created our environment. This is the environment-
as-found: fixed, immutable. Thus the facticity of environment and
the concept of disability are mutually interactive.
The following autobiographical vignettes will communicate
some sense of the way in which the built environment shapes the
experience of disabled people, their self-concepts, the way they re-
late to others, and their sense of place in the world. In my writing,
the environment is an arena in which social conflicts — often gener-
ated by the environment itself — are played out.
The vignettes may be painful to read; they were painful to write.
I offer them not to bare old wounds and battle scars but to demon-
strate the value of the subjective mode, best entered through the
analysis of experience, as a tool for understanding the interactive
effects of society and the environment on the development of the
disabled individual.
Living Upstairs
When I was seven years old my family moved from Boston to Milton, Mas-
sachusetts. Although it coincided with the great outflux of Jews from Rox-
bury, and the simultaneous influx of Southern blacks, our relocation prob-
ably had less to do with that migratory phenomenon known as "white flight"
94 Institutional and Bureaucratic Contributions
than with my physical disabiHty. The Jews of Cheney Street worried about
their changing neighborhood, but my parents' greatest fear was that as I
grew older and, therefore heavier, they would one day soon be unable to
carry me up and down the stairs. They had reason to worry.
Our apartment building lay more than halfway up Cheney, a steep
slope leading to the summit of Elm Hill. Until I was three, we lived in
number 58 on the third floor. To reach our apartment, one climbed a full
flight of exterior stairs and two more inside, making about 45 steps in all. My
mother and father slung me over a hip, or "sat" me on a crooked arm and
then huffed and puffed the way up, a climb which left them increasingly
weary and ill-tempered. I never surmounted my fear of being dropped, and
my consequent fretfulness annoyed them, as if, even so young, I was sup-
posed to appreciate their efforts. After four years of this routine, when it was
time to think about sending me to school, my parents must have realized that
they could not carry me down every morning and up every afternoon five
days a week (to say nothing of taking me on Saturdays to grandmother's
house and on Sundays to Franklin Park). Accordingly, we moved next door
to number 60, where we lived for two years on the second floor. There, my
parents had to contend with only four exterior steps and one flight inside: an
improvement, relatively speaking.
For me, the move next door changed nothing. At an age when my peers
were allowed to run downstairs to play with their friends, I depended on the
willingness of my parents to "lug me up and down" (their phrase). When
they carried me, I felt myself to be, in the most literal sense, a burden. I
knew I tired them out. I resented their fatigue, for they groaned, as if insist-
ing I admire their martyrdom on my behalf. I had one flight less of complain-
ing to listen to, but I was still a captive audience and while, up and down
the block, I saw children who were free, insofar as seven year olds are free, I
was not.
After seven years of climbing hill and stair, my parents accepted the
inevitable, and we moved to Milton, first renting for two years, then moving
into our own home. My parents took me along on some of these house-
hunting expeditions. They claimed they wanted it to be easier to carry me in
and out of the house, not that they wanted me to be able to get myself in and
out of the house. (I am not sure that they would have understood the differ-
ence between these two objectives.) Many of the houses seemed to my
childish eyes to be nothing but stairs. I looked at those stairs and, sensing
that this was critical, made my opposition to these prospective homes as
relevant to my parents' way of looking at them as I could manage. Thus, I
never pointed out that I couldn't get myself in and out; I reminded my
mother of the last time she had strained her lower back carrying me up the
steps. The one they finally purchased was as far from a model of accessibility
(we didn't then know the word) as can be imagined; yet it was superior to
several they had considered.
The new place on Houston Avenue was a two-family house, with a first
floor apartment six steps above grade. The lower unit had only two bed-
rooms, which meant, if we occupied it, that my sister and I would have to
What Every Architect Should Know 95
share a room. Three years older than I, Karen wanted her privacy; on this
she was quite vocal. The upstairs unit offered access to several additional
rooms in a finished attic. My sister could have a lot of privacy up there; I
would have to crawl up yet another flight of stairs to invade her personal
space.
My parents explained the options, as they saw them. Either we could
have less stairs for me (and less space for the family), or we could have "a
few more steps" for me (and ample space for the family, as well as a sister
who wouldn't hate me for making her share a room). Then they said to me,
an eight year old child, "You decide."
/ should decide? What was going on here? What were they asking of
me? I was eight years old; who was I to say where we should live? If I said,
"Downstairs," they might go along with it — and then complain about and
forever resent the fact that I had "made" them live in quarters too tight for
comfort. They might not go along with it, and then I would see what I
suspected was in fact the case: that they had already made the decision to
live upstairs, that the choice was false. If I said, "Upstairs," my parents
would love me, congratulate each other for parenting such a "mature" child,
and, most importantly, be able in good conscience to answer any complaint
about the stairs I might make in future years with the response, "But the
decision was yours; we gave you the choice." So with an air of, "We only
want what you want, dear," they ostensibly left it to me to determine where
we would live. Feeling that I had been manipulated, without at the time
being quite able to explain how, and feeling that I had no choice but theirs, I
said, "I want to live upstairs." They praised my maturity, and I knew that, in
some important way, I had been had.
My parents compounded still further the bind in which they had placed
me when they asked me if I wanted a ramp up to the porch on the first floor.
They pointed out that it would enable me at least to go from the driveway to
the level of the porch, some 42 inches above. "Still," my mother added,
almost as an afterthought, "you'll still have the flight inside to cope with, so
it doesn't really offer so much, does it?"
"No," I thought, "but if we had occupied the lower level apartment, it
would have got me right inside." I knew what my parents wanted me to
decide. They reminded me how terribly expensive a ramp was and how hard
my father worked and how little income the family had and how much my
last stint in the hospital had cost. . . . Again, it was not hard at all for me to
make a "mature " decision, one which I privately resented but for which I
had ostensibly no cause to complain. After all, my choice had been "freely
made."
Leaving Home
I left home when I was 22 years old. I would like to say that my reasons for
leaving were the same as anyone of my age, but it wouldn't be true. "I want
my independence," everyone says when moving out on their own, but what
96 Institutional and Bureaucratic Contributions
it meant for me as a disabled person was not quite what it meant for an
able-bodied woman. It was not merely that I wanted to be closer to my job,
or that my parents were putting a damper on their daughter's sexual activity
(the absence of which was then so total that I regarded myself as nearly
neutered). I left because I envisioned myself living with aging parents possi-
bly for the rest of my life, simply because I feared to find out whether or not
I could take care of myself.
I lived and quarreled with my parents in an inaccessible home, unable
to get in and out unaided. I couldn't afford a car; father was always remind-
ing me how expensive "under-25" insurance was and expressing doubtsthat
I could get a wheelchair in and out of a car myself, despite my telling him
that I had, in fact, done it. (It never occurred to anyone to equip the family
car with hand controls.) Taxis were financially disastrous alternatives, and
obviously, I couldn't get a wheelchair on a bus. I went places if and when
my parents were willing to drive me; they drove me everywhere I wanted,
as long as I wanted what they wanted.
My mother believed that I couldn't minister to my own bowel care
needs without her; she had convinced me, too, for a long time, but I was
beginning to question this. The idea that she might be mistaken was in-
tensely disturbing. It seemed as if she needed to feel needed so badly that
my independence would be sacrificed. I was coming to resent her participa-
tion in my care as a gross and humiliating instrusion on my body, as an
assault to my spirit. In the most basic physical sense, I had no privacy and I
felt as if I were being repeatedly violated.
Suffice it to say we did not get along. Our household was perpetually
engaged in an undeclared civil war. The only way to break the Gordian knot
of our conflict was for someone to leave or die. Until I convinced myself that
I might be able to live on my own, the only way out I could see was suicide.
I was beginning to think of it continually, and it terrified me. When I real-
ized that anything had to be better than this, I finally found the courage to
plan the move.
Eventually, my parents realized that I was right; I had to go. My rela-
tives were astonished that they would "let me go," as if it were their duty to
compel me to stay. In reminding them that I was a reasonably intelligent
adult, my mother reminded herself. Before too long, my parents (with who
knows what internal conflicts) were helping me to look for an apartment.
As a low-income wheelchair user (salary of a junior secretary), my re-
quirements for a dwelling were quite specific. The rent had to be $125 or
less. The place had to be within a few blocks of Boston University, where I
worked, since I was determined to push to the office, except in bad weather,
when I would have to pay for a cab. (Incidentally, cabs were very had to get
for such short runs, since the drivers thought the effort of getting my wheel-
chair in and out was not adequately offset by the low fare. In winter, I would
wait for up to an hour.) I had to be able to enter the apartment unaided and
be able to maneuver in the kitchen and bathroom. Realtors told us only the
size, the location, and the rent; therefore, we had to run around to all pro-
spective apartments, a colossal waste of time.
What Every Architect Should Know 97
This was 1967, and most of the buildings in Boston's Back Bay were
hopeless. None of them had accessible front entrances. Most landlords re-
fused to rent to me, saying, "What the hell do you think I'm running, a
nursing home?" Finally, Mr. Greenblatt rented me a basement studio near
Kenmore Square and let my parents pay to have the back door ramped,
"conditional upon the approval of the other tenants." Success! Let me de-
scribe this palatial abode.
To get to the rear entry, I had to push down an alley running between a
nightclub-disco-bar and a movie theater. The alley, which had about a one-
in-eight gradient, culminated in an expanse of fractured blacktop and loose
dirt, which was deeply rutted and pocked by water-filled holes. I would
never lose my fear of falling into them. I wasn't afraid of getting wet; I was
petrified of being unable to get back into my chair in such a lonely spot,
since the place was alive with rats. These weren't just any rats; they were
Back Bay rats, enormous, sleek, and fearless. In daylight they stood in your
path and watched you approach, as if appraising your edibility. The route
disgusted me, but it led to the only semi-affordable, partially accessible
place I could find in the area; therefore, in the absence of choice, I sus-
pended judgment.
Inside, the studio was wood-paneled and dim. Some of the darkness
was caused by the filth on the windows, the outside of which were unclean-
able, because of the burglar screens bolted onto the frames. A front burner
on the stove didn't work and, since I couldn't reach the rear burners, it
necessitated my cooking one-dish meals until I bought a hotplate (Mr.
Greenblatt never did repair the stove). Although the bathroom door was
wide enough, I had to remove it, since it blocked access to the tub; this was
all right for me, but I thought it would disconcert any company I might have.
My parents let me take several pieces of furniture, some dishes and
glassware, and their apprehensive blessings for the new venture. They
moved the furniture in for me, cleaned the place up, and got a carpenter to
build a ramp, under which the rats subsequently made a fine home of their
own. I could see that my parents were far from pleased with the place. I
wondered if they thought I liked it or hated it. This, my first apartment, was
small, dark, roach-infested, hard to get around in, and surrounded by an
army of vermin, but I loved it. It was mine. The door had dead-bolt lock, and
I could have all the privacy I wanted.
That first night, as my parents left me at my apartment, they assured me
that I could call them any time of day or night; I had only to say the word
and I could come home. I thought they were hoping my independence
would be temporary, but I realize now how anxious they must have been.
I've seen the same pattern when disabled friends leave home. I must say,
my mother could hardly have been reassured when I asked her, "How do
you know when water's boiling?" To everything they said, I nodded and
answered yes. Yes, yes, yes. They knew I could hardly wait for them to
leave.
The next morning was Sunday. I awoke at nine and lay there in bed,
blissfully surveying my books, clothes, couch, walls, floor, ceiling, and door,
98 Institutional and Bureaucratic Contributions
luxuriating in my spendid squalor. I could let people in or not. I could buy
the food I wanted, eat when I wanted to, go to bed or stay up when I
wanted, go out when I wanted . . . / would choose. I didn't have to come
home early because my parents didn't like to stay up late. I didn't have to
ask my father to drive me anywhere. I could experience whatever presented
itself, without asking my parents if it was all right with them. That was real
independence. I thought of all that freedom and the new life I had begun. As
I threw back the covers — I remember as if it were this morning — an incred-
ibly wide grin stole across my face.
At the Moscow Circus
I was excited to learn that the Moscow Circus was coming to Boston. Per-
haps I was moved by nostalgia; many years ago, I had seen a pair of Russian
dancing bears perform on the Ed Sullivan Show and I had never forgotten it.
Besides, European circuses struck me as being much more fun than the
three-ring American variety, which dazzled the eye but divided my atten-
tion. Whatever the reason, I was eager to go.
My life, at the time, revolved around disability. I was actively involved
in several disability rights organizations and working for a state agency on a
program to develop housing for low-income disabled people. I wrote, ad-
vised, consulted, and did research on disability-related issues. Sometimes it
seemed as if I did nothing else. In a way, I think I looked at the circus as a
chance to get away from it all. This was going to be an offnight for disability.
No axe-grinding, no politicking. I would go back to worrying about civil
rights and human services later. For one lovely evening, though, it would be
cotton candy and Pavlov's performing dogs.
A circus is best enjoyed in company, so I invited two friends, Kent and
Marsha. Kent bought our tickets, advising the ticket office that one of us
used a wheelchair and that we wanted to sit together. Once inside the Gard-
ens, we traveled up several ramps and into an employee's elevator off the
usual path of travel. My friends were shown their seats, which were several
feet beneath the level of the aisle, while I remained in my wheelchair, since
a transfer to the regular seat below was too difficult for me. With their heads
at the same level as my footrests, conversation was awkward, but at least we
were together.
More than six feet wide, the aisle left plenty of room, as long as I sat
sideways, for people to pass me (my chair being less than 23 inches in
width). The arrangement offered uncomfortable viewing, but I was willing
to put up with it. The management, unfortunately, was less willing to put up
with me. The usher, a rather self-important looking youth, advised me that
"wheelchairs are supposed to sit over there," indicating a spot only slightly
closer than Moscow.
"That's fine," I said, "but I'm with two friends who walk; they haven't
brought their own chairs."
"You have to move; you're a fire hazard," he said.
What Every Architect Should Know 99
"I'll move if you'll put folding chairs down there for my friends," I
thought that sounded reasonable; Marsha and Kent seemed agreeable.
"Impossible!" he snapped. "I have other things to do."
"Then I'm afraid I can't move," I replied.
"Well," said the usher, "I'll let you stay, but the chief usher will be
along soon. If your refuse to move for him, he'll throw you out; he won't be
so nice." I wasn't aware he had been nice.
Inevitably, the chief usher materialized, a red-nosed, pudgy man of
about 60. I observed him reprimanding young children a few rows below
me. He looked like a man who chose to vent his rage on everyone else's
children because he didn't get any respect from his own. He enjoyed his
authority as chief usher and he meant to use it. "You'll have to move," he
fairly barked at me.
His bearing reminded me of my father, making me feel tiny, vulnerable,
and very young. I actually trembled. Then I stiffened, enraged that he
should treat me in this way. Why the hell should I move? We paid for these
seats. I was here with my friends, and no one would separate us. "No," I
quavered in a small voice.
Face purpled, the veins on his forehead stood out. He shouted, "I'm
gonna get a policeman to throw you out," and left. I sat there shaking. My
friends were angry but calm; I, in contrast, was intensely upset. They urged
me to hold my ground and not permit him to bully me. What did that usher
think this was, Kent joked, Russia? Despite my friends' support, I found the
situation hard to endure. The ushers were making me feel as if I didn't have
a right to see the circus with my able-bodied friends. They were wrong, I
thought, wrong, but a small part of me was not so sure. I had spent 12 years
attending a special school where I could be with what they said was "my
own kind," and I wasn't always quite sure what my own kind was. Thus, I
was easily intimidated. As the chief usher pointed a hostile finger at me,
people had stared at us. The commotion embarrassed me, and although my
rage demanded I stay, other feelings screamed at me to leave. Seeking a
compromise, I noticed that I could, with difficulty, maneuver myself into the
seats behind me. I asked a woman if she and her children would like to swap
their seats for ours, which were more expensive and offered a better view.
Suspicious at first, she traded gladly when I explained that it was probably
the only way my friends and I could sit together. I think I also hoped that
sitting in a regular seat would render me invisible.
While the chief usher summoned the law, I performed my own circus
act in the stands. Dropping from my wheelchair to the floor, I crawled
beneath the barrier, swung from it, and clambered up into a regular seat.
Then I folded the wheelchair and brought it flush against the barrier. It now
took up less than a foot of aisle space. Surely, I thought, the chief usher
would be satisfied. I sat there regaining my breath, embarrassed to have had
to crawl in public ("like a monkey," a relative used to say), but also feeling
very capable, because of my improvisational use of the barrier to complete
the transfer. Before my self-satisfaction had settled in, however, a policeman
appeared. "That does it!" cried Marsha, "I'm calling my photographer friend
100 Institutional and Bureaucratic Contributions
at the Boston Globe." She and Kent sailed off in search of a telephone,
leaving me alone with the law.
"Ma'am," he said softly, "I'm afraid you'll either have to move the
chair, or leave." He was respectfully courteous, and I resolved to respond in
kind.
"I'm not willing to sit apart from my friends," I said, "but I may be
willing to park the wheelchair elsewhere, if it's in a safe place."
"You can park it over there," he said, indicating an exposed area. Any-
one could steal it there, I decided. I wouldn't dream of positioning it out of
close reach in an arena like this unless it were under lock and key and I- told
him so. "Why?," he asked gently.
"Would you leave your legs somewhere else?" I asked. "If my chair is
stolen, I have no way of leaving this seat. It cost six hundred dollars, it's
uninsured, and I can't afford a new one. I am a working person; if it's stolen,
the state won't get me another. Without it, I can't work, shop, make dinner —
or leave the Gardens. Do you really want me to park it there?"
"But your chair is a fire hazard. You have to move."
I looked around us. From higher up in the stands, about 20 people
dissatisfied with their seats had trickled down to sit in the aisles, on the
stairs, anywhere they could. If any people were creating a potential hazard,
they were, not me. "If you make me move. Officer, that would be discrimi-
nation." He clucked his tongue and drummed his fingers, impatient and
annoyed. "Do you see all those people sitting in the aisles?" I asked. He
did. "Well, if you make me move, without making all of them move, that's
discrimination."
Puffing out his cheeks, he lifted the bill of his cap, then expelled the
air. Cheeks deflated, he looked depressed. "I'm sure not going to be the one
to make you move," he said, as he walked away. The chief usher returned
just then, and so did my friends. The old man began to hector and bully me
afresh. I had resisted all efforts to move for nearly an hour. The circus had
been going on for half an hour and I hadn't seen any of it. I was tired, angry,
and humiliated, and suddenly all I wanted to do was leave. Without even
looking at the old man, who continued to shout, I told my friends I was tired
and wanted to leave; did they mind?
As we rose from our seats, a little girl in a wheelchair entered, escorted
by her mother and a girlfriend. She was crying, and from her mother's words,
it was clear that she too had been told that she had to "sit with the wheel-
chairs," apart from her mother and friend. I was appalled. The little girl and
I weren't the first people who had had trouble here. I remembered the
experience of my friend Vivienne, who had come here with her five-year-old
daughter. They had taken Viv's wheelchair away and forgotten to return it.
As the Gardens were closed and cleaned up for the night, she had sat ma-
rooned in the stands for an hour, her child clinging to her in tears. The
memory of that little girl in the wheelchair preyed on me for a long time.
One more thing happened that night. It's a pity O. Henry couldn't have
been there to record it. On the way out Kent went to the ticket office to
demand our money be returned to us. He was advised that this performance
What Every Architect Should Know 101
was a fundraiser; no refunds were ever made for benefit performances.
Where were the proceeds going? They went, Kent was told, to the Muscular
Dystrophy Association "to help the handicapped."
In Conclusion
First, we must recognize the significance of the autobiography as a
way into others' lives, of the great potential it offers architects who
sincerely seek understanding of issues of access in order to create a
world that is barrier-free. Ms. Davis, though speaking very person-
ally, is actually speaking for a host of people. What she says is more
significant than a story about a private life. She opens wide a door
and reveals to us experiences different from our own, with which we
immediately empathize, from which we as architects take more than
information, we take reason and a desire to act. It is only when
confronted by this whole image that the built environment takes on
the meanings attributed to it by others and which the architect must
understand to build environments that are truly accessible.
Second, we must recognize that the architect is actually less
powerful than one imagines to affect change. Search as architects
may for an approach to a barrier-free environment — to desired
change — they alone do not create buildings. If architectural solu-
tions addressing certain social needs are not the most appropriate for
society's good (e.g., the segregation of the infirmed and elderly into
custodial environments or children onto "playgrounds"), it is not
entirely the architect's fault. It is the rare citizen or professional who
can single-handedly demonstrate through individual works a more
humane, socially appropriate point of view when the majority values
other things.
Bibliography
Brickner, R. The broken year. New York: Doubleday, 1972.
Brickner, R. My second twenty years. New York: Basic Books, 1976.
Chevigny, H. My eyes have a cold nose. New Haven: Yale University Press,
1962.
Goffman, E. Stigma: Notes on the management of spoiled identity. Engle-
wood Cliffs, N.J.: Prentice-Hall, 1963.
Goffman, E. Relations in public. New York: Basic Books, 1971.
Lifchez, R., & Trier, P. The university as a half-way house. In M. R. Redden
(Ed.), New directions for higher education: Assuring access for the
handicapped. No. 25. San Francisco: Jossey Bass, 1979.
102 Institutional and Bureaucratic Contributions
Lifchez, R., & Winslow, B. Design for independent living: The environment
and physically disabled people. New York and London: Whitney Li-
brary of Design and the Architectural Press Ltd., 1979 (cloth); Berkeley:
University of California Press, 1981 (paper).
The handicapped lobby. San Francisco Bay Architects' Review, May 1977,
pp. 12-13.
9 Transportation and the
Needs of the Disabled
Jerome R. Dunham
A large portion of the population in the United States cannot use pub-
lic transportation. These include the very young, the very old, the
very poor, and many who are severely disabled. As Larsen (1979) says,
Impaired physical ability and fixed or limited incomes are two of the
major problems facing elderly and handicapped (E&H) persons. These
problems interact to make the transportation needs and usage require-
ments of the E&H unique. Studies, both national and local, demon-
strate that this segment of the population will increase in the future, and
. this, in turn, will place a special importance on planning and imple-
menting transportation projects which serve the needs of the elderly
and handicapped, (p. 1)
It is interesting to look at some of the characteristics of the
disabled population. A survey prepared for the Urban Mass Trans-
it Administration states that there are 7,440,000 transportation-
handicapped people in the urban United States. Affecting one out
of every eight urban households, the population ranges from 5.4%
in mass transportation areas to 4.4% in nonmass transit areas. The
study defines the disabled population according to problem areas
and functional problems:
Problem areas:
1,938,600 who use mechanical aids (26.1% of transportation-
handicapped people)
1,572,800 with a hearing dysfunction (21.1%)
I wish to single out the following people for their significant contributions to this
chapter: John Michaels, Carolyn Feiss, Kent Hull, Marlyn Minkin, Michael Hughes,
Dorene Witt Urell, Richard Fredrick, Michael Hardisty, Beverly Juntti, Anne Waltz,
and Louis Sternberg.
103
104 Institutional and Bureaucratic Contributions
1,566,000 with a visual dysfunction (21.1%)
409,200 who use a wheelchair (5.5%)
3,502,300 (47.1%) who have other problems
Functional problems
Difficulty going up or down stairs (64.9%)
Difficulty stooping/kneeling/crouching (60.9%)
Difficulty walking/going more than one block (56.9%)
Difficulty waiting/standing (56.2%)
Some of these categories overlap, particularly visual and hearing dys-
functions. When an individual is multiply handicapped, the resulting
problems are geometric rather than additional.
Despite the charming picture of the crippled child in the cart
drawn by dogs or goats, in the past very little attention has been paid
the transportation needs of the disabled. The first governmental in-
tervention to remediate these problems occurred in 1970. Most
people concerned with transportation never considered the transpor-
tation problems experienced by the disabled, and the disabled
neither envisioned the possibility of their having transportation
rights, nor realized that they could make demands to change the
transportation system. A first step in precipitating change is to make
the appropriate persons aware that there is a problem; there is, how-
ever, resistance to acquiring this awareness.
Thus, although adequate funding is essential for bringing the
level of transportation service to a point where it will meet the needs
of disabled people as well as those of the general population, the
underlying problem is still one of awareness and what is inadequately
expressed as attitudinal. Solutions to transportation and other prob-
lems require a basic belief in the expanding potential contribution of
disabled persons and a prolonged intimate knowledge of the precise
skills and limitations in different situations for each disability group.
Not only is there attitudinal resistance and a low level of aware-
ness of the transportation needs of the disabled, there also seems to
be a resistance to innovative design of vehicles or systems to meet
these needs. The modem city bus is not radically different from the
old horse-drawn wagon with planks thrown across to sit on. The
wheelchair (so far as this author can discover) was not originally the
result of an inspiration for a transport device for the nonambulatory
individual but, rather, a gradual adaptation of the two-passenger Bath
chair in which the rich were pushed about in Bath, England, for
Transportation and the Needs of the Disabled 105
entertainment. It would be interesting to know if a rich invalid ever
thought through the chair's applicability to travel problems. The mo-
torized wheelchair has been beset by design problems for years, and
there seems not to have been any fallout from any recent technologi-
cal advances.
Innovative design and coordinated research are important, but it
appears these must be coupled with subsidization and a better un-
derstanding of how industry can respond to the challenge of making
a better wheelchair or transbus. One area that would not require
large sums of money, but does require both awareness and the capac-
ity to implement a program, is the training of transportation person-
nel to more sensitively interact with disabled persons. A one-time,
half-day orientation of bus drivers or airplane cabin attendants to a
half-dozen disability groups is not adequate training. But a long-
range plan involving the interaction of transportation personnel and
a variety of disabled persons in a task-oriented set of problem-
solving experiences would help clarify issues in selected transporta-
tion situations. This would provide a base on which practical solu-
tions could be built and would make travel more practical and a
richer experience for a larger number of disabled persons.
Some disabled persons cannot make a single move without con-
fronting some barrier to their mobility. To surmount these barriers
requires a combination of motivation, ingenuity, mechanical aids,
money, and in some cases, the help of a second party. A person who
has been disabled for a long period has, by necessity, developed
methods of dealing with mobility problems; the newly disabled will
benefit from these advances made by others, but they will have to tax
their own resources as they begin to establish mobility and transpor-
tation options.
It would be easy to be lulled into complacence by the great
progress in the last decade. National mandates now require access to
all forms of public transportation, but as yet the actual public trans-
portation available to the disabled does not compare in adequacy to
the services available to the able-bodied.
Recently issued Department of Transportation regulations re-
quire wheelchair accessibility on buses, subways, and other mass
transit modes. The technology for accomplishing this is new, and
cost estimates run very high to include them in the mainstream of
public transportation. However, the experience of the municipality
of metropolitan Seattle demonstrates that an excellent wheelchair
lift, the Lift-U of Seattle, can be installed on a new bus for under
$6000. Several other manufacturers also have wheelchair lifts for use
106 Institutional and Bureaucratic Contributions
on buses. Among them are: General Motors, Travelift by the Vapor
Corporation, Environmental Equipment Corporation, Translift of Can-
ada, and Transportation Design and Technology, Inc. These lifts are
passive and do not interfere with normal passenger use. The two
basic models are a front-door lift which is formed out of the steps the
able-bodied passengers use. When the lift is not in use, it is stored as
the front steps. The General Motors lift uses the same type design
but is mounted at the rear door. The Lift-U lift is a solid platform
which serves as the bottom step of the front doorwell and stores
under the bus; when in use it is deployed from under the bus.
Programs to improve mobility between the home and the bus
stop and the bus stop and the final destination must be implemented
to make use of buses an alternative. Curb ramps must be installed
and other barriers removed before main-line buses can be effectively
used by the disabled.
The disabled must rely primarily on the private automobile for
their transportation needs. With improved hand controls, wheelchair
lifts for vans, and steering systems, many severely disabled are able
to provide their own transportation. Amputees, hemiplegics, para-
plegics, quadriplegics, and others with disabilities that diminish
strength and movement can now safely control their own cars or
vans.
Hand controls are available that fit nearly every type of car or
van. Also available are foot controls for those without functional arms
or hands. They are attached to the vehicle after it is delivered, and
most models of hand controls do not interfere with the standard
operation of the vehicle. Lifts or ramps for vans are becoming more
popular; there is an increasing variety of models available, and
dealerships are proliferating rapidly to install lifts and make other
needed modifications and conversions of vans to suit individual
needs and tastes. The best sources for information on hand controls,
wheelchair lifts, and van conversions are magazines written for the
disabled consumer, such as Paraplegia News and Accent on Living.
Information can also be obtained from local rehabilitation centers, or
centers for independent living.
Disability Types
Each type of physical disability imposes special handicaps for use of
transportation. Assessment of the actual needs of each disability
group in specific situations is essential to proper planning and im-
plementation of affirmative action in the broad area of transportation.
Transportation and the Needs of the Disabled 107
Blindness
Since most persons designated as blind have varying amounts of
useful vision, the problem for many partially sighted persons is a
matter of training themselves to use those visual or auditory cues
they can perceive. For many partially sighted persons, even those
with many years of living with limited sight, it is mandatory that they
receive this training from a low-vision clinic and a mobility instruc-
tor in order to form new habits of noticing visual patterns.
The totally blind person moves about in an invisible environ-
ment. If newly blinded, the individual must retain old abilities as
well as learn new techniques of movement and keeping in contact
with the environment. The newly blinded person, the elderly blind
person with some hearing loss, and the deaf-blind person primarily
proceed through their environment by physical contact. Called "fol-
lowing a shoreline," this means following the wall or the edge of
the carpet with the foot or the tip of the white cane, or touching
lightly along the furniture from bed to washroom. Outdoors, it may
mean following the wall of a building, the line between grass and
sidewalk, or the line between level and slight descent as, for ex-
ample, in front of a gas station. Those well-trained blind persons
with good hearing utilize auditory cues for most of their orientation
and only slip back to the "shoreline" technique when in the pres-
ence of loud, sustained noise. The pounding of a jackhammer, a
very high wind, a combination of heavy traffic noise, a jet flying
overhead, or a suburban train moving past are all highly salient to
the blind.
In a complex, unfamiliar environment, the blind person is usu-
ally forced to rely on the help of another individual, a dog guide, a
long white cane, or an electronic device. To use these effectively,
the blind person should receive training from a qualified instructor.
The majority of blind persons use canes; only a small percentage
use dogs, and even fewer use the new electronic devices whose
beams reach out and bounce back from wall or tree and change
back into detectable sound, so that the blind person can learn to
identify the textures and distance of an object. As a general rule,
the blind person should first go through a regular mobility training
course with a cane, only then going on to guide-dog training or an
electronic device.
The first difficulties encountered in traveling independently by
bus, rail, or air are the unfamiliarity and size of the terminal, depot,
or airport. When the facility is used often, the blind person can mem-
orize its floor plan, whatever its size. If the blind person is moving
108 Institutional and Bureaucratic Contributions
through a strange city for the first time, however, he or she will
probably ask for the help of a passerby, although many persons with
a guide dog or cane will follow the rush of people by sound. The way
to the street is thus found with only a vague notion of the area
through which he or she traveled. Sometimes, a well-trained blind
person can operate in the following way: he calls a cab and enters it
at his New York apartment; the cab takes him to the limousine termi-
nal; cab driver helps him to counter; personnel at counter assist the
blind person into the limousine; limousine driver assists the blind
person to skycap at airport; skycap eventually delivers the blind per-
son to airline attendant. In other words, by not letting go of one
helper until the blind person has secured a new person on whom to
be dependent, he has established the capacity to be a world-wide
traveler. Those using dog guides usually achieve greater indepen-
dence and are seldom refused admittance because of the dog. Most
dog users eventually have to interpret the law, however, to some
restaurateur or bus driver.
Deafness
The transportation needs of deaf people vary, depending on the de-
gree of verbal and auditory communications necessary. Private trans-
portation requires little or no dependence on verbal communication.
Deaf drivers have excellent driving records.
Difficulties do occur for hearing-impaired persons, however,
with the use of public transportation. Railroad stations, bus terminals
and airports often provide travel information and changes over pub-
lic address systems. Ticketing agents and information personnel
often have little patience for written communication, especially dur-
ing peak travel hours. It is not uncommon for the most crucial travel
information to be given by an agent while looking down and writing
or turning around to handle the luggage. This eliminates the possi-
bility of lipreading. Taxicabs are available mainly via telephone con-
tact which constitutes inaccessibility for deaf people.
As more public information agencies are equipped with special
telecommunication devices (TTYs) used by hearing- and speech-
impaired people, public transportation will become more accessible
to them. The availability of TTYs provides the deaf with informa-
tion that hearing people have been able to receive by phone, such
as city bus schedules and arrivals and departures of planes, trains
and buses. The increasing use of visual communication devices has
provided deaf individuals with additional accessibility to public
transportation.
Transportation and the Needs of the Disabled 109
Deaf-blind
It is difficult for most people to conceive how a deaf-blind person
can travel independently. Among the vision-and-hearing impaired
there are many gradations of limited vision and limited hearing
which may confuse the bus driver or the public at large. In the home
and yard, many totally deaf-blind persons accurately interpret vibra-
tions in the floor, airflow, changes in terrain, and the angle of the
sun. Some have devices such as vibrators that help in determining
when the doorbell and the telephone are ringing; some use a braille
compass for orientation.
The greatest problems for the deaf-blind in city travel are com-
municating with people in the community and dealing with traffic.
These problems are unique to the combination of visual and hearing
loss. In terms of communication, if a deaf-blind person wants to talk
with someone who doesn't know sign language, it becomes neces-
sary to rely on the print alphabet spelled into the hand, write notes if
the person has enough vision to read them, or use a portable device
called a tellatouch machine, which has a conventional typing key-
board and gives feedback to the deaf-blind person in braille. For
example, when applied to bus travel, a deaf-blind person has to pre-
pare a written or typed sign requesting the correct bus information
and show it to the driver of each bus until the correct bus arrives.
Then the person must rely on the driver to tell him when to get off.
This can be cumbersome and is only effective if the person reading
the sign is willing to be of assistance. It is not uncommon for the
driver to forget and miss the person's stop. Another example involves
the deaf-blind person attempting to cross a street in a downtown
area. The person prepares a card ahead of time requesting help to
cross the street. He must then rely on someone passing by to read
the card and offer assistance. It may be a while before help is
offered, and it may be extremely difficult to get the proper help.
Many times the person reading the sign will not understand what is
being asked, which usually leads to confusion.
In dealing with traffic, if the deaf-blind person has enough vi-
sion to notice the cars, there is usually no problem learning to inter-
pret traffic flow. However, if the person cannot see the cars, he then
must depend on people passing by, using cards as explained above.
This usually works fairly well in an area with a number of people
available. In a quiet residential area, however, it is another story.
The person is literally stranded, because there are often no people
available to offer assistance.
In considering possible solutions to these problems, community
110 Institutional and Bureaucratic Contributions
education immediately comes to mind. This could begin with in-
service training programs for professionals working with disabled
persons, as well as bus drivers, and could extend even to brief spots
on a local or national television network. To help solve the problem
of crossing streets in a quiet residential area, especially on the way to
and from work, volunteers who know sign language could be orga-
nized, or carpools established in which the deaf-blind person pays a
specified amount instead of taking a turn at the driving. There now
are laws enforcing accessibility, but a lack of public awareness of the
needs of the deaf-blind will surely render these laws ineffective.
Mental Retardation
The individual with borderline intelligence may have learned vari-
ous bus routes and how to handle money; those who are moderately
retarded may have more serious difficulties. It is possible for the
young adult, even with serious limitations, to learn a city bus route,
but it may take a year for the learning to be foolproof. Problems arise
when there is a change in the schedule (particularly at transfer
points), changes in routes, as well as buses that are late or early. The
ability to deal with airports, bus terminals, or train depots depends in
part on the complexity of the facility. The three primary barriers are
signs, schedules, and telling time correctly. Inability to read signs
and not being certain how to ask the right questions can lead to
much uncertainty and a number of errors. Reading travel schedules
can be a difficulty for many people and is impossible for the non-
reader. Many moderately retarded persons can learn to tell time on
the hour and half-hour, but most lack the ability to tell time more
precisely, a skill necessary for a number of travel situations. Making
contact with Travelers' Aid prior to the trip makes it possible for the
retarded person to travel with some comfort and safety.
Arthritic Disease
Arthritics, like all other people, need the emotional and mental
stimulation of getting out in the world. They also have the necessary
trips to the physician and physical therapist and, for some, employ-
ment. Without some mode of transportation this is impossible. Se-
verely afflicted arthritics often cannot drive by themselves, so they
are dependent on salaried drivers or volunteer drivers who are often
friends. Many arthritics are maintained on a limited income, restrict-
ing them to older vehicles which are in constant need of repair.
Rheumatoid arthritics cannot usually maintain their vehicles because
Transportation and the Needs of the Disabled 111
of increased loss or range of motion and constant pain. Those who
suffer with rheumatoid arthritis can be of any age. Most of them need
and want to be as active as possible in spite of continuing loss of
physical strength. Many severely afflicted arthritics use a van, as
transferring from wheelchair to car seat is a real problem. The van
has either a hydraulic lift or a double trough-like ramp and tie-down
devices that secure the chair so the arthritic can remain in the chair
itself. Since rough riding can produce much pain, it is important that
the vehicle have good shock absorbers and run smoothly, and that
the arthritic passenger wear a support collar around the neck for
protection. It is extremely difficult for an arthritis victim to find a
vehicle completely suitable without employment or some type of
subsidy.
Cardiac Disease
The cardiac patient is confronted with both the psychological and
emotional stresses that relate to his transportation to and from work,
the store and other destinations within the community. The stress of
driving and parking in a busy city environment can be alleviated by
proper public transportation.
The greatest challenges to a cardiac patient who uses either pub-
lic or private transportation is to safely walk the distance from the
bus stop and/or parking spot to the intended destination. The degree
of difficulty is increased significantly if this distance involves walk-
ing up noticeable grades and/or walking in extremes of heat or cold.
Since coronary heart disease is the leading killer in America today,
evaluation of public transportation modes and routes should give
consideration to these factors.
Pulmonary Disease
Those individuals with chronic obstructive pulmonary diseases such
as asthma, bronchitis, or emphysema have some additional problems.
A person with severe asthma can become breathless just standing in
a cold wind waiting for a bus, and going uphill half a block to the bus
stop may be extremely difficult for some individuals with chronically
obstructed lungs. The emphysema victim who has to carry oxygen
with him may find it is illegal to carry liquid oxygen in his vehicle
through a tunnel, and the airlines will not allow the private oxygen
supply to be brought on the plane. If the person is afraid he will
need oxygen, the airline will sell it to him at considerable cost which
he must pay even if he doesn't use it. Another problem, both in the
112 Institutional and Bureaucratic Contributions
airline supply of oxygen and in ambulance and aid cars, is that some-
times the oxygen provided is too rich, and the individual's regular
breathing response is interrupted — he simply stops breathing.
Cerebral Palsy, Mental Illness, and Alcoholism
Lastly, there should be mention of three populations — the cerebral
palsied, the mentally ill, and the alcoholic. The severely involved
cerebral palsied person may be intellectually able to cope with the
complexities of travel but may not have any feasible way to be trans-
ported on a daily schedule to a work situation where his abilities can
be utilized.
Many persons with psychiatric disabilities are overwhelmed by
the complexities of urban transportation. Advocacy is needed to se-
cure bus passes and to teach patiently the routes and transfer points.
Reduced cost of transportation is also an important support to suc-
cessful adjustment of the psychiatrically disabled to community life.
In the case of alcoholism, the urban transit system needs a firm
and enlightened policy. With sensitive training, its transit operators
can learn to discriminate between the people with alcohol on their
breath and those who are sufficiently inebriated to be out of control.
People with many other kinds of disabilities have similar experi-
ences and difficulties with travel. Some people with multiple sclero-
sis (MS) report a variety of problems when their condition has ad-
vanced or when they are not in remission. For instance, some have
visual problems and cannot see to drive, a few have to sit close to the
restroom on the bus because of bladder and bowel incontinence, and
sometimes it is the frustration of not having a simple bar to hang on
to in an airline washroom. Some airlines will not transport a motor-
ized wheelchair or the batteries for them, in which case a power
source at the destination must be located. When they do take a fold-
ing wheelchair in the luggage compartment, the wheelchair user
may have to wait for half an hour before an attendant with an airport
chair comes to deliver the traveler to the baggage compartment
where he can pick up the chair. If the person with multiple sclerosis
or rheumatoid arthritis does not have a driver's license because an
attendant is used as a driver, and if the individual does not have
credit cards or other identification, it may be difficult to arrange for
easy car rental at the destination.
Almost all disabled people have to plan far ahead, informing
transportation personnel of their disability and needs. The disabled
person may have to double-check arrangements at the destination to
be sure that any special needs will be met. It may take strict regula-
Transportation and the Needs of the Disabled 113
tion of food intake or deliberate abstinence from fluids for a matter of
hours if the transportation washrooms are inaccessible. Some indi-
viduals with communicative disorders may have great difficulty in
making their needs understood and need to plan for this contin-
gency. As one person with MS related, "I look normal, but when I
get tired my voice is very weak and people don't understand me."
Travel for Recreation
An increasing number of disabled persons are traveling around
North America as well as the rest of the world. Some of the individu-
als writing about what's possible are excited and optimistic. For ex-
ample, Russek writes in his foreword to Gutman's A Travel Guide
for the Disabled (1967):
Travel by the physically handicapped has been increasing in recent
years. One sees them everywhere in wheelchairs, on crutches, wearing
artificial limbs (or braces) in every major airport, railroad station and
ship embarkation area. Travel facilities, as well as hotels, have provided
ramps, wheelchairs, attendants and structural modifications to accom-
modate these travelers, (p. 3)
And Bruck, in her hook Access (1978, p. 225), writes, "The world has
opened up for disabled travelers. Airlines, railroads, interstate buses,
highways, accommodations, places of interest are becoming accessi-
ble and willing to serve this newly emerging sector of the traveling
public."
Although travel is simpler than it once was for most disabled
people, many barriers of attitude and architecture still survive. Air-
port facilities in small developing countries can still provide hair-
raising experiences. Many historical antiquities, such as the Acropo-
lis or Great Pyramid of Cheops, have to be seen from a distance.
Information about travel can be secured from:
Access Guides for Cities and States, Rehabilitation World, Travel
Services Department, 20 W. 40th St., New York, N. Y. 10018.
Access New York, N.Y.U. Medical Center, Institute of Rehabili-
tation Medicine, 400 E. 34th St., New York, N.Y. 10016.
Access Washington, Information Center for Handicapped Indi-
viduals, Inc., 1413 K. St., N.W., Washington, D.C. 20005.
A List of Guidebooks for Handicapped Travelers, The Presi-
dent's Committee on Employment of the Handicapped, Wash-
ington, D.C. 20210.
114 Institutional and Bureaucratic Contributions
Dialysis Worldwide for the Traveling Patient, NAPHI, 505
Northern Blvd., Great Neck, N.Y. 11021.
Easy Wheelin in Minnesota, Robert R. Peters, One Timberglade
Rd., Bloomington, Minn. 55437; Education Services Depart-
ment, The Minneapohs Star and the Minneapolis Tribune, 425
Portland Ave., Minneapolis, Minn. 55488.
Flying Wheel Tours, 148 West Bridge St., Owatonna, Mich.
49201.
Grand Travel Consultants, 427 Broad St., Shrewsbury, N.J.
07701.
Gutman, Ernest M., Encar Publications, Fort Lauderdale, Fla.
33308: Cape to Cape by Wheelchair, Middle Europe by Wheel-
chair, and A Travel Guide for the Disabled.
Handicapped Visitor Services Booth, Union Station, 50 Mas-
sachusetts Ave., N.E., Washington, D.C. 20002.
Handy-Cap Horizons, 3250 East Loretta Dr., Indianapolis, Ind.
46206.
Highway Rest Areas for Handicapped Travelers. The Presi-
dent's Committee on Employment for the Handicapped, Wash-
ington, D.C. 20210.
Hill Travel House, 2628 Fair Oaks Blvd., Sacramento, Calif.
95813.
Kasheta Travel, 139 Main St., Far Rockaway, N.Y. 11690.
National Park Guide for the Handicapped, no. 2405-0286, Su-
perintendent of Documents, U.S. Government Printing Office,
Washington, D.C. 20402.
Rambling Tours, P.O. Box 1304, Hollandale, Fla. 33099.
The Wheelchair Traveler, Douglas R. Annand, Ball Hill Rd., Mil-
ford, N.H. 03055.
Travel for the Patient with Chronic Obstructive Pulmonary Dis-
ease, Rehabilitation Research and Training, George Washington
University Medical Center, Ross Hall, Rm. 714, 2300 Eye St.
N.W., Washington, D.C. 20037.
Travel Information Center, Moss Rehabilitation Hospital, 12th
St. and Tabor Rd., Philadelphia, Pa. 19141.
Vacationlands N.Y. State, Supplement for Handicapped and Se-
nior Citizens, The Easter Seal Society, 2 Park Ave., New York,
N.Y. 10016.
Where Training Wheels Stop, Paralyzed Veterans of America,
Washington, D.C. 20014.
Transportation and the Needs of the Disabled 115
Public Policy
Excluded from reference in the civil rights and transportation legisla-
tion of the 1960s, the right to access to transportation by disabled was
mentioned in a 1970 amendment to the Urban Mass Transit Act
(UMTA) of 1964, Section 16(a):
It is hereby declared to be the National Policy that elderly and handi-
capped persons have the same right as other persons to utilize mass
transportation facilities and services; that special efforts shall be made
in planning and design of mass transportation facilities and services so
that the availability to elderly and handicapped persons of mass trans-
portation which they can effectively utilize will be assured; and that all
federal programs offering assistance in the field of mass transportation
(including the program under this Act) should contain provisions imple-
menting this policy.
This new section tied disabled people's right of access to public
transportation to public funding, a first step toward improving the
mobility of the disabled population.
The next major piece of federal legislation that carried this con-
cept forward was the Rehabilitation Act of 1973. Section 504 of this
Act states:
No otherwise qualified handicapped individual in the United States
shall, solely by reason of his handicap, be excluded from the participa-
tion in, be denied the benefits of, or be subjected to discrimination
under any program or activity receiving federal financial assistance.
Although Section 16 of the UMTA amendments covered only the
transportation programs funded by the Urban Mass Transportation
Administration, Section 504 touched all transportation programs with
any federal funds. According to a 1977 report of the Comptroller
General of the United States (General Accounting Office, 1977), 114
federal programs provide financial assistance to human service
agency-operated transportation programs serving various disadvan-
taged people including those with disabilities. In addition, federal
funds assist a large number of other transportation programs, includ-
ing the airline regulatory programs; airport, train, and other terminal
construction; the Amtrak system; highway construction; and of
course, public transit. Section 504 applies to all these programs.
It is important to recognize that the passage of the UMTA
amendments and Section 504 of the Rehabilitation Act did not auto-
matically open up transportation for disabled people. Today, little
116 Institutional and Bureaucratic Contributions
headway has been made, except on paper. What has occurred is a
growing awareness on the part of the transportation industry and
some pubHc officials that these laws mean expensive changes in both
equipment and standard operating practices (estimates in 1977
ranged from $1.8 billion to $5 billion to implement the 504 regula-
tion for UMTA alone). The transportation industry's reaction to these
regulations has been delay and more delay. This can be illustrated
by looking at the history of the Transbus. The design was begun in
1971, after which there was a series of rules published, hearings
conducted, rules amended. Finally, in May 1979 when bids were put
out there was no response. At this writing Transbus is still in the
requirements, but it appears not to be a viable issue.
Changes in federal policy covering access to other transportation
modes have taken place with considerably less publicity, but fre-
quently as much controversy, as the Transbus issue. Until the publi-
cation of the DOT regulations implementing Section 504, architec-
tural barrier removal and changes in policy to improve access to
transportation by disabled people occurred in a somewhat disjointed
manner.
The leader in the field has been Amtrak which adopted a policy
to provide special assistance to "Aged and Handicapped Passengers"
(Amtrak Executive Memorandum, 1972). "It will be Amtrak policy to
consider the special requirements of aged and handicapped persons
in our passenger service policies and in the design of passenger cars,
stations, and terminals." The policy goes on to say that "as special
barriers now exist which, in a sense, discriminate against these pas-
sengers, special efforts will be made by Amtrak through employee
training, passenger information programs, station design, passenger
assistance, and in all aspects of vehicle design and renovation."
Commenting on The Source Book for the Disabled (Hale, 1979),
Feiss states:
Enlightened as these arrangements are, certain practical difficulties re-
main. Passengers are not permitted to travel in wheelchairs. On short-
distance runs, the special toilet for the handicapped, which is large
enough for wheelchair entry, is in the food service car, of which there is
only one, and at the most two, on each train. But given the basic restric-
tion that no passenger may occupy a wheelchair, the disabled traveler
must first retransfer to the wheelchair and then again out of it onto the
train seat.
The solitary passenger cannot expect more than minimal help from
an Amtrak employee in transferring to a regular train seat, and the only
seat on each train which has a removable arm to facilitate transfer from a
wheelchair is also in the food service car. On most short-distance runs.
Transportation and the Needs of the Disabled 117
including those from Boston to New York to Washington, there is no
reserved seating — not even for the special seat in the food service car.
Nevertheless, given advance notice, Amtrak staff claim that every effort
will be made to accommodate the handicapped passenger.
Feiss continues by saying that the DOT's May 1979 regulations im-
plementing Section 504 provide, in great detail, specific design and
program standards covering all aspects of Amtrak's services and set-
ting time limits for their implementation. The implication of these
new standards is that the 1972 policy was not adequately effective as
a means for improving access for disabled travelers.
Most of the United States population lives in urban areas, mak-
ing rapid transit systems especially important to the transportation
needs of the disabled. Concerning these systems, Bruck (1978)
states:
In subways, accessibility is severely limited. Only cities with new sys-
tems are accessible to mobility-impaired indi\ idiials: Atlanta's MARTA
(Metropolitan Area Rapid Transit Association), San Francisco's BART
(Bay Area Rapid Transit Association), and Washington's Metro. New
York, Chicago and Boston systems remain almost totally inaccessible.
Even the accessible systems require disabled persons to traverse long
distances between the train platforms and accessible elexators. Vision-
and hearing-impaired passengers need clearly marked destination signs
on the trains and audio announcements about destinations on platforms
and about stations within the trains.
At Washington's Metro the elevator buttons are identified by raised
printing and in Braille. Half-fare rates apply twenty-four hours a day.
Routing and scheduling is available for deaf citizens on a TTY serxice.
Metro is also the first subway designed to warn deaf passengers of
incoming trains. Every time a train comes, a row of lights on the edge of
the platform grows brighter, warning deaf people to step away from the
edge, and lights dim after the train leaves the station, (p. 225)
It should be noted that, in the case of the Washington, D.C. system,
it took a rather drastic legal action to halt the commencement of
service until the subway was made accessible.
The airlines pose a different set of problems. Unlike Amtrak
which is owned and operated through the federal government, the
commercial airlines are privately owned and operated, although fed-
eral funds support their regulation and the construction and opera-
tion of airports. Controversy about the rights of disabled passengers
on commercial aircraft has raged for years. Until recently people in
wheelchairs were regularly denied the right to travel by air. Even
now, one often hears reports of people "being treated like baggage."
118 Institutional and Bureaucratic Contributions
The safety of the passengers and the plane has been given as the
reason that wheelchairs, white canes, and other assistive devices
have been refused on board. In 1977, the Federal Aviation Adminis-
tration amended its rules establishing a policy covering denial of
service to passengers needing special assistance:
No certificate holder may refuse transportation to a passenger on the
basis that, because the passenger may need the assistance of another
person to move expeditiously to an exit in the event of an emergency,
his transportation would or might be inimical to safety of flight. . . ."
However, these rules allow the airline to refuse service if the airline
has "established procedures (including reasonable notice require-
ments) for the carriage of passengers who may need . . . assistance"
to exit quickly, but only if the passenger fails to comply with the
notice requirements in the airline's procedures, or the passenger
cannot be carried in accordance with the airline's procedures. The
rules go on to require that the airline provide its local FAA office
with a copy of the procedure it adopts for review by the FAA admin-
istrator. The significance of this rule is clear. There are few, if any,
guarantees of equal treatment of disabled people among the airlines.
The burden of knowing all the varying rules falls squarely on the
disabled person.
The DOT Section 504 regulations seek to standardize and clarify
the rights of disabled passengers using federally financed airport
facilities. Speaking to "each operator at an airport receiving any fed-
eral financial assistance," the regulations specify that all fixed facili-
ties, services, and amenities at airports (terminals) must be fully ac-
cessible to disabled people, regardless of their disability. Of special
interest are sections covering the provision of assistance and spe-
cially designed jetways and passenger lounges for the enplaning and
deplaning of passengers. Where such equipment is not available,
lifts, ramps, or other suitable devices not normally used for the
movement of freight can be used to board passengers in wheelchairs.
The implication of these new regulations, when read in their entir-
ety, is that if they use any federally funded airports, airlines will not
be allowed to deny access to passengers who are disabled, thus nulli-
fying the FAA policy described above.
While UMTA-funded public transit and paratransit systems
around the country have been subject to Section 16 of the UMTA, as
amended, efforts to provide adequate accessible public transporta-
tion for disabled people have been uneven. Uniformly, all public
transit operators receiving Section 5 operating assistance from
Transportation and the Needs of the Disabled 119
UMTA have provided half-fare programs for elderly and disabled
riders. A number of cities including Los Angeles and Seattle have
adopted policies of full accessibility, but have been unable to find
fully reliable wheelchair lifts and are only replacing a small part of
their inaccessible fleet each year, so accessibility is spotty, at best.
In some communities, plans have been made to pool a number
of vans and minibuses to form a paratransit system or to form a
service where nothing else is available. However, these coordinated
efforts are hard to implement over a large region so that, at this
writing, only the small state of Delaware has a state-wide authority
for special transportation (DAST).
Many people have planned federally financed "dial-a-ride" sys-
tems, which were discontinued after the federal funding period ex-
pired. However, many cities operate a limited service which picks
up passengers at their doors and delivers them to their destinations.
Such services are usually popular with recipients, but they are ex-
pensive. Door-to-door services usually require advanced booking,
ranging from a matter of hours to a matter of a few days. Some
providers may require trip prioritization, such as medical first, work
second, then shopping, recreation, and so forth. They are rarely oper-
ated the same hours as regular bus services, and many services are
not provided on the weekend. Some systems, as in Tacoma, Wash-
ington, have planned a mixed program — accessible standard transit
plus a fleet of dial-a-ride vans serving people who cannot realisti-
cally use the transit system.
The potential effect of Section 504 on the nation's public trans-
portation systems is tremendous. New regulations mandate that
transit and paratransit vehicles purchased after May 31, 1979 be
wheelchair accessible and that all terminals and support facilities
and services must meet specific standards for accessibility. The key
phrase in these sections of the DOT implementing regulations is
"the system, when viewed in its entirety, must be accessible to
wheelchair users." This phrase means that the entire system does
not have to be accessible. For example, secondary commuter or
rapid-rail and subway stations do not have to be accessible to
wheelchair users as long as "key" stations are. Key stations are
defined as transfer points, major interchanges with other modes,
and end stations. The entire fixed-route public transit system (bus)
does not have to be accessible either, according to the regulations:
program accessibility is achieved when one-half of the peak hour
fleet is accessible to wheelchair users.
Public policy is only as good as the efforts to carry it out. In
stating that disabled people have the right to use publicly funded
120 Institutional and Bureaucratic Contributions
transportation, the federal government has set the ground rules for
the future. A major problem occurs, however, in sectors where fed-
eral programs do not exist or where federal programs are of limited
scope. For example, most DOT programs focus on the urban areas
with few programs designed to serve rural communities or benefit
the disabled people in these areas. In addition, federal funding to
support these new policies or establish new programs does not ap-
pear to be readily available, and growing pressure to reduce taxes
and cut public spending does not suggest that this situation will be
remedied soon.
Litigation
In the litigation brought by physically handicapped individuals to
secure access to public transportation systems, courts have taken
three different approaches. First has been the purely passive ap-
proach of deferring entirely to the decisions of administrators of the
transportation companies. Not only have courts shown great defer-
ence to the administrators, they refused to interpret Section 504 to
require extensive affirmative efforts on behalf of handicapped riders.
An example of this judicial conservatism is Snowden v. Birming-
ham-Jefferson County Transit Authority:
Although it is necessary for persons handicapped in this manner
(wheelchair users) to arrange for someone to help them board and alight
from the bus, these persons are allowed to use the transportation vehi-
cles in question. Thus, it cannot be said that persons who ambulate by
wheelchair are excluded from use of the defendant's transportation sys-
tem. For this reason, the court finds no violation of the Rehabilitation
Act of 1973 (by the defendant), and hence that Act provides plaintiff and
the class she represents with no cause of action.
Had this interpretation of Section 504 been widely accepted by
courts, it would have gutted the implementation of the statute in
transportation accessibility matters. However, a second approach by
courts, although somewhat passive, has been more activist because it
relied on administrative regulations promulgated by the Urban Mass
Transportation Administration as guidelines for determining appro-
priate transit services and viewed the principal function of courts as
enforcement of those regulations. In United Handicapped Federa-
tion V. Andre, the Court of Appeals for the Eighth Circuit took this
approach to the UMTA regulations:
Transportation and the Needs of the Disabled 121
On the basis of record before the district court, if it were not for the
subsequent promulgation of the administrative guidehnes and regula-
tions, we would agree with the district court's result. However, we feel
that the denial of relief to the plaintiffs cannot be justified in light of
these recent definitions and guidelines. Although the buses in question
have been purchased and placed in service, because of the recent de-
velopments the defendants now have the burden to take affirmative
action to conform to the regulations and guidelines. It is difficult to
assess the record and statutes in any other light. . . . The district court,
upon receiving further evidence, should reappraise defendant's compli-
ance with the statutes, regulations and guidelines, and fashion whatever
equitable relief it deems necessary.
This approach is limited in the sense that it appears to ratify and
use as a basis for further proceedings the UMTA regulations (which
many handicapped people and their advocates have considered in-
adequate). At the same time, it at least recognizes the obligation of
public authorities to make affirmative efforts to remove the barriers
in the transit system and to design the system in a way that some
degree of access is provided for handicapped passengers.
The third approach has been taken by courts which have gone
beyond the Andre holding and attempted to assess the actual perfor-
mance of transit authorities in specific situations. In Vanko v. Finley
the federal district court assessed the operation of the Cleveland
Transit Authority in terms of compliance with the UMTA guidelines.
The court concluded that compliance by local transit authorities with
the UMTA regulations was sufficient to satisfy the requirements of
both Section 504 and the Urban Mass Transportation Act "special
efforts" provision. Likewise in Atlantis Community Incorporated v.
Adams, the court also was unwilling to go beyond the provisions of
the UMTA regulations in requiring federal or local defendants to
provide accessible transportation for handicapped people.
Thus although handicapped people have been able to persuade
courts to go beyond the very restrictive approach exemplified by
Snowden, judicial activism has been quite limited. Courts have
shown extraordinary deference to the judgment and role of adminis-
trative agencies in defining what constitutes appropriate public
transportation for handicapped people, even against contentions
that the levels of effort provided for in the regulations are inade-
quate. Overall, the judicial response to suits brought in the trans-
portation area reflects a cautious approach. Currently, there is not a
great deal of promise for major litigation attempting to challenge
inadequate public transportation policies at either the federal or
local level.
122 Institutional and Bureaucratic Contributions
References and Bibliography
Amtrak Executive Memorandum, No. 72-4, Washington, D.C.: March 15,
1972.
Architectural and Transportation Barriers Compliance Board. Resource
guide and literature on barrier free environments, with selected anno-
tations. Washington, D.C.: 1977.
Atlantis Community Incorporated v. Adams, 453 F. Supp. 825 (D. Col.
1978), appeal docketed no. 78-1963 (9th Circuit, Dec. 14, 1978).
Bruck, L. Access, the guide to a better life for disabled Americans. New
York: Random House, 1978.
Buyer s guide, Bloomington, 111.: Accent on Living Magazine, 1978.
Department of Transportation, Urban Mass Transit Administration. Techni-
cal report of the National Survey of Transportation of Handicapped
People, Washington, D.C.: 1978.
Federal Aviation Administration. Regulations, Chapter 27, Section 121-586,
Washington, D.C.: effective 4/24/78.
Feiss, C. Personal communication, 1980.
General Accounting Office. Report of the Comptroller General of the
United States: Hindrances to coordinating transportation of people
participating in federally funded grant programs. Washington, D.C.:
USGPO, 1977.
Goldenson, R. M., Ed.; Dunham, J. R. & Charlis S., Assoc. Eds. Disability
and rehabilitation handbook. New York: McGraw-Hill, 1978, pp. 120-
126.
Gutman, E. M., A travel guide for the disabled. Springfield, 111., Charles C
Thomas, 1967.
Hale, G., Ed., The source hook for the disabled. New York: Paddington
Press, 1979, p. 53.
Hall, K. Personal communication, 1980.
Handicapped Americans Reports Magazine, 1979,2, (17).
Larsen, F. Transportation for the elderly and handicapped. Unpublished
Master's thesis, University of Washington, 1979.
Michaels, J. Transportation: An overview of laws and service models for
people with disabilities. Olympia, Wash.: Governor's Committee on the
Employment of the Handicapped, 1978.
Snowden v. Birmingham-Jefferson County Transit Authority, 407 F. Supp.
394 (M.D. Ala. 1975), aff d per curiam, 551 F. 2d 862 (5th Cir. 1977),
reh. den. 554 F. 2d 475 (5th Cir. 1977).
United Handicapped Federation v. Andre, 558 F. 2d 413 (8th Cir. 1977),
reversing and remanding 409 F. Supp. 1297 (D. Minn. 1976).
Vanko v. Finley, 440 F. Supp. 656 (N.D. Ohio 1977).
10 Keeping the Disabled
out of the Employment
Market
Financial Disincentives
Bonnie Sims and Scott Manley
There is increasing reference to the role financial disincentives to
employment play in the total psycho-social-vocational rehabilitation
of the disabled. The disincentive problem is not to be confused with
malingering, because in many instances the individual may be physi-
cally, mentally, and psychologically ready for employment. Here the
disincentive problem is the realization by the disabled individual
that benefits may be lost once employment is secured. Thus, in real-
ity, the social compensatory systems are designed to compensate
disablement rather than assist productivity.
Financial disincentives do not always manifest themselves in
cash-in-hand benefits, nor do they necessarily equal or exceed pre-
injury financial status. An individual receiving Social Security Disa-
bility Insurance and Medicare, for example, may also be entitled to
food stamps, rent subsidy, and educational and social service ben-
efits. A combination of these indirect benefits represents significant
cash value.
If employment following rehabilitation is to be successful, it must pro-
duce income that would generate utility as great as the utility generated
by benefits in order to be worthwhile to the client. In addition, a labor
income would need to cover employment costs such as clothes, trans-
portation, food on the job, and taxes. Under Title XVI (SSI) the cash
benefits are lower, so incentive to work is presumably higher unless
other welfare provisions such as food stamps, rent and subsidies reduce
that incentive. (Carley, 1975, p. 8)
This chapter deals primarily with disincentives to employment
faced by the spinal cord injured, persons who acquired their injuries
123
124 Institutional and Bureaucratic Contributions
traumatically, often as the result of their active hfe-styles. Individuals
affected are for the most part between the ages of 19 and 39, have a
high school education or less, and were employed pre-injury in blue-
collar positions. Their vocational experience is mainly in fields re-
quiring physical and manual dexterity; they literally made their living
off the "sweat of their brow." Thus, following an incapacitating total
and permanent injury, they do not have the skills and training neces-
sary to secure sedentary vocational positions. In most instances, finan-
cial compensation for their labor would not exceed disability benefits.
Further compounding problems associated with their vocational reha-
bilitation is the widespread endorsement of a psychology of entitle-
ment wherein the individual feels he has literally paid his premium
for disability benefits and is entitled to reap the returns.
Financial benefits available to the disabled can be grouped into
four major categories: (I) Workers' Compensation, (2) Social Secu-
rity/SSI, (3) private insurance (including no-fault insurance), and (4)
coordinating benefits.
Workers' Compensation
An individual injured on the job is entitled to Workers' Compensa-
tion benefits, including medical coverage and weekly indemnity
payments as compensation for lost wages. In recent years greater
emphasis has been given to the provision of rehabilitation benefits as
well. The Department of Labor indicates approximately 80% of the
workers nationally are covered under state and/or federal compensa-
tion programs. However, there is considerable variability in individ-
ual state laws with regard to the extent of coverage, benefits paid,
and insurability requirements. Individuals addressed under Workers'
Compensation programs are those classified as totally and perma-
nently disabled. According to the State Workers' Compensation
Laws (1969), they are presumed to be unable to work or unable to
work steadily in the labor market.
Some state plans, such as those in Minnesota and California, may
statutorily determine who is permanently and totally disabled. Such
people would be entitled to receive lifetime indemnity benefits re-
gardless of changes in employability. In other states indemnity pay-
ments are limited to a time and/or dollar maximum (i.e., $200/week for
400 weeks) with no penalty imposed for re-employment. This amount
is, in fact, a settlement on the disability paid out over a period of
weeks. In the majority of states, however, the individual may be rated
as having a permanent partial disability which would result in the
Keeping the Disabled out of the Employment Market 125
termination of benefits once employment is again secured. In all
states unlimited medical coverage is provided. This benefit insures
that if medical care is needed, it will be made available to the disabled
individual regardless of post-injury employment status.
Knowledgeable and enlightened Workers' Compensation insur-
ance carriers have developed creative benefit packages which assist
the disabled individual in re-employment with the returns being a
reduction in medical costs. This is a significant feature when it is
learned that the lifetime care of a paraplegic may approximate
$900,000 (El Ghatit, 1978). Consider, for example, the following case:
Mr. S. was rendered paraplegic while working on the job as a manual
laborer. He was of average intelligence but lacked formal schooling beyond
the eighth grade. He was married and had two children. Mr. S.'s insurance
company was involved with his case from the onset of the accident. They
explained the insurance benefits available to him and, in addition, indicated
they would pay costs associated with air transportation and living arrange-
ments for the patient's wife while she learned the various aspects of her
husband's rehabilitation program.
During Mr. S.'s rehabilitation program the insurance carrier requested
from the rehabilitation staff specific recommendations for housing modifica-
tions. Although this was not a specific benefit of his policy, the insurance car-
rier realized the importance of allowing Mr. S. the freedom to be as indepen-
dent as possible. The insurance carrier also recognized that the long-term med-
ical costs of Mr. S.'s case would probably be significantly higher if he were
confined to his home, where he could become depressed and deteriorate
physically. An automobile with automatic transmission was also purchased
and delivered to the rehabilitation facility so that Mr. S. could receive driver's
training in his own vehicle. At the completion of his rehabilitation program,
he and his wife drove to their recently modified home in their new car.
The scene was set for the insurance carrier to approach Mr. S. about
returning to employment. He was well informed of his benefits and had a
high level of trust in the insurance carrier. If he returned to work, the insur-
ance carrier would remain responsible for ongoing medical costs, which they
felt would be minimized as a result of Mr. S's improved self-concept as a
contributing member of his community. Mr. S. was enthusiastic about re-
turning to work, and therefore the insurance carrier initiated vocational test-
ing and exploration. Mr. S. wanted to operate a laundromat, so a market
analysis was conducted to determine the need and potential success of a
laundromat in his community, with positive results. The insurance carrier
advanced the necessary funds to purchase the land, build the laundromat,
and provide the necessary equipment. Mr. S. would be responsible for
cleaning and general operation of the facility. His net income the first year
was over $20,000. Mr. S. continues to do well medically and vocationally.
The insurance carrier has been able to keep medical costs to a minimum and
has already recovered its initial investment.
126 Institutional and Bureaucratic Contributions
Insurance carriers recognize that cost effectiveness is achieved
through medical management and that indemnity benefits may ac-
count for only a fraction of the potential lifetime cost of a catastrophi-
cally injured person. Farsighted companies recognize that adequate
medical management and acquisition of rehabilitation. skills are not
in themselves sufficient to ensure reintegration into the community
if the environment prohibits an active life-style or relegates the indi-
vidual to domiciliary care. Realizing that total rehabilitation requires
the necessary equipment, housing, and transportation, compensation
carriers may revamp the environment, purchase nonmedical conven-
ience items, and equip vehicles with the proper controls to ensure
driving independence. In some instances the carrier may advance
indemnity benefits to allow purchase of an accessible home, a use-
able vehicle, or self-owned business, as seen in the preceding case
example.
Although case management by the Workers' Compensation in-
dustry could serve as a model to various social agencies, there is no
conclusive proof that a Workers' Compensation recipient is more
likely to return to employment than someone with alternative spon-
sorship. Problems preventing re-employment may be circumvented
through the provision of adequate housing, transportation, medical
coverage, and attendant help when needed, but there still remains an
unknown quantum which severely curtails vocational involvement.
Most importantly, the individual needs full information of his
benefits under state law. Often there is confusion (as well as suspi-
cion) on the part of the disabled individual as to whether his benefits
will be discontinued should he seek re-employment. He is often
unsure as to the extent of medical coverage and the willingness of
the carrier to provide assistance beyond the letter of the law.
Negligence on the part of the carrier to provide this information
about benefits can be exemplified by the case of a young quadri-
plegic male receiving unemployment benefits at the time of injury.
Under the law he was entitled to indemnity benefits based on his
unemployment income, a precedent set in his state of residence.
Since he was not informed of his potential claim, he could well have
sought counsel in settling this matter. The attorney could have sued
for punitive damages from the carrier in addition to securing lost
wage benefits for his client.
Although in many states there is entitlement to full benefits or a
settlement as such, attention should be paid to provide offsetting
indemnity provisions, wherein the individual continues to receive
indemnity payments despite employment. Thus if he returns to work
at a lower salary than that earned prior to injury, he would be com-
Keeping the Disabled out of the Employment Market 127
pensated by an additional sum to equal his prime employment level.
As an individual progresses in his employment and his salary status
improves, the offsetting amount would be decreased.
Referring again to the psychology of entitlement theory, consid-
eration should be paid to terminology associated with disablement.
Terms such as "total and permanent," "lost wages," and "disability
insurance" only encourage and reinforce the inability to perform.
Substituting the term "continuation of salary" without taxation or con-
tinuation of full salary with deductions for a period of one or more
years might reassure the individual that he remains an integral mem-
ber of the work force. Use of such terms would also impose an obliga-
tion on the individual to return to his vocational duties. Although a
study conducted by Sims and Manley (1979) indicates that employed
spinal-cord-injured individuals who have returned to their former
employer receive greater salaries than spinal-cord-injured individuals
who return to a different job and/or a different employer, it is not
always feasible for the disabled to return to their former positions. In
such cases, employers may have to consider other positions for these
employees to assume. Motivation to re-employ the disabled worker
may be increased if the employer is required to subscribe for reim-
bursement through various compensatory systems, such as Social
Security or Workers' Compensation.
Certainly, potential employers should be informed that individu-
als with Workers' Compensation coverage are entitled to full medical
coverage for their specific injury and any concomitant complications.
They should be made aware that the cost of ongoing medical needs
met through group health and accident plans need not rise as the
result of increased utilization by handicapped employees. Em-
ployers should be notified that the Second Injury Fund is available
to the handicapped employee should he incur additional injuries on
the job. Finally, employers should be alerted to tax incentives, such
as deductions for modifications to work site and the availability of
funds for initial salaries paid to handicapped employees. The em-
ployer may also call on the state vocational rehabilitation agency to
assist with modifications to the work environment.
Social Security/SSA-SSI
Prior reference was made to an unknown quantum severely curtail-
ing compensation recipients from becoming re-employed. It is the
assumption by these authors that the major disincentive contributing
to this phenomena is Social Security Disability Insurance (SSA).
128 Institutional and Bureaucratic Contributions
If the disability is presumed to continue for at least 12 full
months, after a waiting period of five full months of disablement, the
individual may receive SSA benefits based on his work history.
These benefits may comprise the greatest income possible, espe-
cially if the person has an active work history, received a substantial
salary pre-injury, and has several dependents.
As previously stated, many spinal-cord-injured persons are not
equipped physically or educationally to secure sedentary jobs paying
a salary comparable to pre-injury rates. Basically, the Social Security
Disability Insurance/Supplemental Security Income (SSI) prograrn is
based on an all-or-none theory regarding substantial gainful activity.
A family of four may receive maximum benefits amounting to ap-
proximately $966 per month tax free. Despite a trial work period of
nine months wherein the disabled individual continues to receive
benefits along with income derived from employment, this amount
is discontinued if the individual is able to earn as little as $330 per
month. Prudent individuals will not risk losing the security of a
maximum insured income in order to become employed in a position
that may gross only $600 per month.
Compounding the disincentive to work is the added benefit of
Medicare, for which one is eligible two years following onset of
benefits. Though Medicare is not comprehensive, it does provide
some security against major medical setbacks.
Since there may be a combination of benefits under SSI and
SSA, it is first necessary to elaborate on the former to understand the
intra-agency discrepancies and how forces combine to pose work
disincentives. Depending on his existing assets, the disabled person
may be eligible for Supplemental Security Income within the first
five months of injury (dependent on date of application). SSI in itself
is a minimal amount, presently set at $238 per month, and it does not
pose a major disincentive. However, entitlement to SSI may also
ensure payment of benefits under Title XIX (Medicaid, Medicare,
etc.). In addition to the indemnity amount from SSI, the individual
may receive benefits from his county of residence as well as atten-
dant fees. (In some states attendant fees approximate $600+). The
greatest disincentive with this combination of benefits is the loss of
medical and/or personal care attendant benefits in the event of em-
ployment. In many states, Title XIX provides coverage for hospital-
ization, physician fees, equipment, supplies, medications, and the
like. With employment, these benefits are terminated unless a state
provision for spend down and/or self-support plan is implemented.
The purpose of spend down or a self-support plan is to allow an
Keeping the Disabled out of the Employment Market 129
individual to earn income above the allowable amount if this addi-
tional income is needed to meet ongoing medical or attendant care
costs.
Although these plans initially provide a financial incentive to
return to work, when the trial work period is completed these bene-
fits are lost. Unless the disabled individual has returned to work at a
salary level which permits him to assume the ongoing expenses of
medical and/or attendant care, he may be faced with the situation of
being too poor to continue working. If he seeks employment, the
disabled person may subscribe to a health and accident plan. In
many instances, however, the plan does not cover pre-existing condi-
tions or requires a lengthy waiting period before full entitlement for
pre-existing conditions takes effect. It may also lack the inclusive-
ness of Title XIX coverage.
An additional deficit in the Social Security system as it exists
today relates to the time period during which medical coverage is
provided for disabled persons. If entitled to SSI benefits, the dis-
abled begin receiving a monthly indemnity payment in addition to
state medical coverage, and, if required and prescribed, aide and
attendant fees. However, they may lose these benefits if they are
entitled to SSA and if there is no spend down program in their state
of residency. As soon as SSA benefits are in effect they often exceed
the allowable maximum income from SSI. Thus not only will SSI be
terminated, as well as any county supplement, but more importantly,
there will no longer be entitlement to Title XIX and to aide and
attendant fees. Two exceptions would be entitlement to an SSA
amount less than the SSI indemnity amount, or a state spend down
program which would continue entitlement to Title XIX and possi-
bly aide and attendant fees. The individual is now without medical
coverage until two years after entitlement to SSA, when Medicare
takes effect. This benefit continues as long as the person receives
SSA or for three years after a return to employment.
Suggestions for Remediation
Title XIX (Medicaid) should be extended as primary coverage for
catastrophically disabled individuals not entitled to other medical
sponsorship. Title XIX should be expanded in its scope to include
prescribed equipment (we would include the term purchase, since
many vendors hesitate to subscribe to payment on a monthly rental
basis), drugs, and equipment repair. In addition, there should be
provision for personal care attendant fees, for attendant costs alone
130 Institutional and Bureaucratic Contributions
can serve as a disincentive if the person sees a large portion of his
monthly labor income allocated to attendant salaries. While full ben-
efits may remain in effect during the trial work period, thereafter an
offset formula should be applied to salaried income, including extra-
ordinary expenses related to self-maintenance.
The disabled person should immediately be entitled to SSA ben-
efits, eliminating the five-month waiting period and continuing for
the longevity of the injury. The five months following injury is a
period of financial crisis for most individuals and families, and in-
come available through the social agencies is desperately needed
during this period. Benefits for total and permanent disabilities need
to begin immediately to help offset costs incurred in making neces-
sary modifications in the environment.
Private Insurance Plans
Many people subscribe to mortgage insurance on their homes or
property, disability insurance on loans or bank notes, or simply en-
roll in a plan offered through newspaper advertisements. They may
also subscribe to private plans available through their place of em-
ployment which supplement disability compensation such as Social
Security and Workers' Compensation. Still other plans pay a straight
daily amount for the duration of the disability, which for most trau-
matic injuries covers a lifetime.
In most mortgage or loan insurance plans, payment is made only
as long as the person is unemployed. Permanent and total disability
is not recognized as cause to pay off the balance. Instead, payment is
made in monthly installments. Though this is not actual cash in
hand, it is a financial obligation the individual would have to meet
should he return to employment.
Suggestions for Remediation
There is little expectation that insurance carriers will change their
policies regarding private disability plans, mortgage insurance, and
the like. Nevertheless, they, too, should give consideration to en-
couraging re-employment. Perhaps benefit to their concern would be
realized by applying an offsetting principle to earned income. They
could ultimately decrease their monetary involvement without jeo-
pardizing the individual's total income. Consideration might also be
given to settling such claims on an annuitized basis.
Keeping the Disabled out of the Employment Market 131
No-Fault Insurance
No-fault insurance laws were designed to expedite the assignment of
responsibility for insurance benefits so injured persons could immedi-
ately receive appropriate treatment without first establishing fault of
liability. Although it is no panacea, proponents believe it is far supe-
rior to the judicial system from the standpoint of fairness and speed in
compensating the automobile accident victim on a first-party basis
rather than a third-party basis (National Institute of Neurologic and
Communicative Disorders and Stroke, 1975). No-fault provisions in-
clude coverage of medical expenses, rehabilitation expenses, work
loss benefits, essential service benefits, and death benefits.
Lost wage benefits with a time or dollar amount limit are avail-
able in all states subscribing to a personal injury protection plan
(PIP). Because the indemnity is in most cases paid within the first
year of injury, it does not constitute a major life-long disincentive to
employment. However, in such states as Michigan, New Jersey, and
Pennsylvania, this is not the case, for there the amount paid is con-
siderable, and payment of benefits may extend over a period of
years. With return to employment these benefits may be discon-
tinued. The possibility thereby exists wherein the individual may be
covered by a plan providing lost wage benefits over an extended
period which, in essence, presents a major disincentive to resuming
employment.
Although most no-fault plans include medical coverage, this fea-
ture of the plan is limited to a dollar maximum or specific time
period, and once met, the individual is forced to obtain such cover-
age through other sources.
Suggestions for Remediation
Though, in most instances, wage loss benefits are depleted before
the individual is physically or psychologically ready for employment,
it would seem prudent for insurance carriers to accelerate payments
or agree to subsidize employment wages without monetary loss to
injured individuals. This gesture is based on the presumption that an
actively involved person is less likely to require excessive medical
assistance.
Careful consideration should also be given to the necessity of
attendant care, the number of hours required, and whether it should
be paid to a family member, since this fee adds to total family in-
come. Once fees have been established a penalty is felt if they are
suddenly withdrawn when the individual becomes employed. If less
132 Institutional and Bureaucratic Contributions
care time is needed, fees should be withdrawn gradually until an
economic balance is achieved. However, in cases in which family
dynamics are disrupted as the result of the partner becoming the
attendant, consideration should be given to paying someone other
than a family member to provide attendant care.
Farsighted insurance carriers are endeavoring to work creatively
within the limits of the no-fault law. Accelerating lost wage benefits
may allow the individual to purchase a van or vehicle which is not an
obligation of the carrier by law but essential to maintaining the dis-
abled person's independence. They are also endeavoring to settle
liability claims with greater expediency, a dual benefit to both car-
rier and claimant.
Liability or uninsured motorists claims should be here con-
sidered. Persons with total and permanent disabilities will in all
likelihood be awarded policy limits under the responsible party's
liability coverage. If the responsible party is uninsured, the individ-
ual will claim uninsured motorist coverage under his own plan.
Speedy settlement of claims can reassure the individual that he
has received all benefits available and ensure his awareness of his
financial status. The most positive approach to claims handling is to
fully inform the individual of his rights under the law. This leaves no
surprises which can upset the claimant and prompt him to seek legal
counsel. It also relieves the psychological tension often observed in
persons who must prove the extent of disability under tort action.
Finally, the advice of an attorney can be a contributing factor to
unemployment since counsel may discourage employment as possi-
bly jeopardizing the ultimate liability settlement. Unenlightened at-
torneys may discourage an injured employee from returning to work
until the case comes to settlement, which often can take a number of
years.
Coordinating Benefits
VA Service-connected Compensation
Little reference is made in this chapter to the Veterans Administra-
tion's system of compensation for service-connected injuries, since
it is primarily a self-contained system. Benefits of entitlement as
well as lifetime medical coverage continue regardless of employ-
ment status and should not pose a major disincentive to re-employ-
ment. The literature, however, indicates this method of compensa-
tion has not proven to be a great motivator to reemployment. One
Keeping the Disabled out of tlie Employment Market 133
possible explanation is that the maximum allotment paid is substan-
tial and service-connected veterans do not experience a financial
need to seek employment.
Nonservice-connected Pensions
An individual receiving less than $6243 per year from the above-
mentioned benefits (SSI, SSA, etc.) and who is in need of aide and
attendant care may be eligible for VA benefits in the form of a
monthly pension and aide and attendant fees. Although not given
priority, they also have access to medical services for hospitaliza-
tion, equipment, supplies, medication, and the like. With loss of
pension through employment they are again relegated to a payment
basis.
Eligibility for another type of compensation, G.I. benefits used
for vocational and/or educational retraining, often include a monthly
stipend based on number of dependents and number of credit hours
taken.
Housing Subsidy
Subsidy may be available under Section 8 for a disabled individual
living in rental property. The amount of subsidy is determined by
adjusted gross annual income (after medical deductions) as well as
the fair rental market in his area of residence. With increased income
his contribution escalates until it exceeds the ceiling allowed.
Though other subsidy housing programs are available through
HUD, including a low-interest rehabilitation loan for modifications
to a home or apartment and a low-interest Farmer's Home Adminis-
tration loan for constructing a new dwelling, the aforementioned
Section 8 subsidy appears to provide the most direct benefits.
Following are case examples illustrating the interworkings of
social benefit programs and how they work against the disabled's full
employment.
Case Example 1
A 36-year-old man from Wyoming became paraplegic as the result of an oil
field accident. His yearly salary as a rigger had ranged between $22,000 and
$27,000. Following the accident, his benefits included indemnity imder
Workers' Compensation, Social Security Disability Benefits for a family of
four, a private disability plan on a bank loan, as well as an additional disabil-
ity policy that subsidized all other monthly income not to exceed $1,500.
This gentleman was made aware that under Wyoming law he was entitled to
134 Institutional and Bureaucratic Contributions
all compensation benefits with lifetime medical coverage for his total and
permanent disability, regardless of his employment status. The disincentive
to employment, however, was created through Social Security benefits of
approximately $928 per month tax free for himself and his family. With
employment he would lose this amount on completion of his trial work
period. In addition, he would again be responsible for meeting monthly
payments on his loan.
Being a reasonable man, he was aware that he could not earn a compa-
rable income, because he had limited educational and vocational skills. He
simply did not feel that he could benefit financially by seeking employment.
Certainly one can understand his reasoning. Though he does not equal his
pre-injury income status, he is not willing to risk losing benefits at the cost of
employment. Thus he stays at home. By his own admission, he has intract-
able pain, his spasticity has increased, and he feels that his family has little
respect for him.
Case Example 2
A 40-year-old quadriplegic with two children was referred for marital coun-
seling. The problem appeared to be that his wife had become his nurse/com-
panion. She freely admitted that it greatly bothered her to have her husband
underfoot as she tended to household chores.
The husband indicated that financial disincentives prevented his em-
ployment, though his former company had on several occasions offered him
a position. Although his income did not meet pre-injury standards, it was
tax free and he did not want to jeopardize his benefits which included a
Social Security income of $974 per month. Workers' Compensation benefits
of $130 per week, and attendant benefits of $650 per month paid to his
wife, making for a total yearly income of over $20,000. He was aware that
he had lifetime medical benefits under the Workers' Compensation law, in
addition to Medicare.
Case Example 3
A 26-year-old unemployed oil field worker was rendered paraplegic as the
result of a vehicular accident. He had no financial assets other than the
camper truck in which he was living at the time of the accident. The truck
was demolished in the accident, but at the time of purchase he had sub-
scribed to a disability policy that would cover the monthly installments on
the unpaid balance of the truck camper.
The young man had no medical insurance or income. Thus it was nec-
essary for him to apply for Supplemental Security Income, Medicaid, and
Social Security Disability Insurance to meet his ongoing medical mainte-
nance, rehabilitation, and personal needs. Prior to discharge, application was
also made for HUD subsidized housing since he had no residence or family
support.
Keeping the Disabled out of the Employment Market 135
Because he was discharged from the hospital three months before en-
titlement from SSA, his only source of income was $208 per month from SSI
and an additional $13 from the county in which he would reside (while
hospitalized he was entitled to only $25). Because of a computer error his
change of address information delayed payment of SSI until two months
after his discharge. Though he obtained HUD subsidy housing and moved
into a less-than-accessible apartment (the narrow bathroom door prohibited
entrance in his wheelchair), he had no money for food, telephone, transpor-
tation, clothing, and the like. He could not draw on assets derived from
selling the camper truck, for to do so would result in cessation of disability
payments. He was supplied no Medicaid card at discharge and could not
obtain necessary medications and supplies.
Through a local charitable organization he received a $300 automobile
for which a vocational rehabilitation agency purchased hand controls.
Through the auxiliary at the rehabilitation hospital he was given an allot-
ment for installation of a telephone, initial rent and deposit, as well as a
small supply of groceries. (He could not apply for food stamps until he had
income with which to purchase them.)
Though he was not psychologically ready for employment at this early
stage in the adjustment process, he indicated it was his only alternative.
With employment, however, he would lose the much-needed medical assis-
tance provided by Medicaid, SSI benefits (once they began), as well as
potential income ($534) from SSA. Concurrently, his rental payment on the
apartment would increase based on his salary. Fortunately he did not re-
quire personal care, though the hazardous bathroom accommodations would
have warranted assistance.
The young man vascillated between total defeat and resignation that he
would have to seek domiciliary care and extreme anger against the "system."
Though his VA status was being reviewed, he had still received no determi-
nation of assistance from the VA at discharge. Consequently, he sought out
legal assistance to review medical management during the emergency care
period. In view of his financial straits he was literally clutching at every
straw. The loss of pride he felt in having to battle the system and in accept-
ing local charity has lead to threats to take his own life.
In conclusion, there are a variety of benefits available to the
physically disabled through federal, state, and worker compensation
systems and private insurance carriers. The combination of these
direct and indirect benefits, including cash benefits, food stamps,
rent subsidy, medical, educational, and social services, represent
considerable cash value. Because the availability of many of these
benefits is contingent on maintenance of an unemployed status, they
in effect become major disincentives to re-employment. Although
financial aids of this type are helpful and at times essential if survival
is to be ensured, these compensatory systems can functionally pro-
hibit the disabled from active vocational involvement, encourage
136 Institutional and Bureaucratic Contributions
invalidism, and reinforce a psychology of entitlement wherein the
individual feels he has literally paid his premium for disability ben-
efits and is entitled to reap the returns. Currently, there is a prolif-
eration of proposed legislative changes which address the specific
economic, social, vocational, and architectural barriers faced by the
disabled. Although all these are necessary and no area of a person's
functioning should be neglected, there are priorities that must be
considered. Basic survival needs must first be addressed. Confusion
over such priorities often results in contradictory and counterproduc-
tive laws. For example, recent legislation encouraging accessibility
to the polling place is certainly desirable but meaningless to the
disabled person who is uncertain if his attendant, whom he pays less
than minimum wage, will arrive to assist with his personal care.
Legislation on the federal level should be directed toward meeting
the basic needs of all individuals suffering from catastrophic disabili-
ties, such as spinal cord injury. If these needs are met with a mini-
mum of confusion and dealt with in a unitary fashion, only then will
the disabled population experience the freedom to seek outside in-
volvement and be able to contribute productively to the national
economy.
References
Carley, E. J. Final report of the ad hoc committee: Ways to improve the
trust fund and SSI program. Providence, R.I.: Department of Voca-
tional Rehabilitation, 1975.
El Ghatit, A. Z. Variables associated with obtaining and sustaining employ-
ment among spinal cord injured males: A follow-up of 760 veterans.
Journal of Chronic Disorders, 1978, 3i (5), 363-369.
National Institute of Neurologic and Communicative Disorders and Stroke.
Bulletin: Casualty and Surety, #1. DHEW Pub. No. (NIH) 76-729. Wash-
ington, D.C.: U.S. Dept. of HEW, January 1975.
Sims, B., & Manley, S. Disincentives to employment. Paper presented at the
Annual Meeting of the American Spinal Cord Injury Association, New
York, 1979.
State Workers' Compensation Laws, Bulletin #161. Washington, D.C.: U.S.
Department of Labor, revised 1969.
11 Health Care Delivery
Problems for the Disabled
Judith Falconer
We hold these truths to be self-evident: That all men are created equal;
that they are endowed by their Creator with certain inalienable rights;
that among these are life, liberty, and the pursuit of happiness.
Many disabled individuals find that only life is guaranteed. Lib-
erty is conditional, and, though they are allowed to pursue happi-
ness, political, economic, and social obstacles result in their
achieving it far less frequently than the able-bodied. Many of the
deficits in both liberty and happiness are direct and indirect con-
sequences of decisions and decision-making processes in health
care systems.
Obviously, health care decisions affect the able-bodied as well
as the disabled. Because the disabled need more medical care,
more often, health care problems become major obstacles rather
than minor, infrequent inconveniences. When illness or injury oc-
curs, most individuals are rapidly reduced to a childlike, dependent
status. Those who fully recover return to adult status; the denigrat-
ing experience of disability soon becomes a distant nightmare.
Those who fail to recover are forced to participate in a medical
system which values health, beauty, and physical perfection. The
disabled are the failures of medical care, to be hidden away, experi-
mented on, kept alive, allowed to live in society only as second-
class citizens.
The second-class citizenship the disabled experience is not a
consequence of disability; it results from decisions that have been
made, are being made, and will be made /or and about the disabled,
but seldom by the disabled. Decisions in health care systems are as
much a consequence of the people who make them as the objective
facts on which they are made. When substantive health care deci-
sions are explored, one must also examine who makes the decisions
and what criteria are used.
137
138 Institutional and Bureaucratic Contributions
Decision Malcers in Heaith Care for the Disabled
Our social system makes illness and disability individual and family
responsibilities: parents are expected to meet the medical needs of
minor children, spouses of their mates, adults of their aging parents.
Adults are rarely forced to accept health care. (The contagious, the
unconscious, and the mentally incompetent are, of course, excep-
tions.) If I choose to refuse medical care, extreme pressure may be
applied to convince me to accept treatment, but I can refuse, both
initially and at any point in the treatment process. We have perhaps
made too much of the necessity for legal restraints against physicians
keeping people alive. Such finger-pointing at physicians allows pa-
tients and their families to abdicate their responsibility. The ultimate
decision maker in health care is the individual or that person's legal
guardian (Schmale & Patterson, 1978). The disabled may refuse
treatment. The problem is that they cannot demand, control, or pay
for treatment; their decision-making power is limited: accept or re-
fuse treatment. No other bargains are offered.
Traditionally, physicians have both the authority and responsi-
bility to make health care decisions about individual patients, pre-
sumably using patient welfare as the sole criterion (Benoliel, 1978).
They have, however, surrendered much of their decision-making
power to the sociopolitical system. Especially for the disabled,
health care is seldom a personal relationship between patient and
physician. When disability occurs, others enter the role of decision
maker and use criteria in addition to patient welfare to make deci-
sions. It is the other people and other criteria that make the disabled
second-class citizens, initially in health care settings, eventually in
society.
Many of the decisions on health care for the disabled are made
by politicians, using economic, social, and political criteria. Politi-
cians decide what illnesses and disabilities will receive the lion's
share of federal research dollars, how much individuals and families
will pay for medical care, what drugs and procedures can legally be
provided, where experimental treatments will be provided and who
will receive them, and so on. Some disabling conditions, such as
polio and smallpox, have been virtually eliminated because adequate
research funds, facilities, and medical personnel were available to
find cures and provide appropriate care to all potential victims.
Other illnesses are rapidly being eliminated as a result of govern-
mental decisions: for example, as all children are required to receive
German measles vaccinations, the incidence of infant deafness and
blindness secondary to maternal rubella declines.
Health Care Delivery: Problems for the Disabled 139
Other political decisions have had negative consequences. The
decision to approve the use of thalidomide resulted in the birth of a
large number of children with severe birth defects; psychiatric pa-
tients suffer extrapyramidal complications of federally approved ma-
jor tranquilizers. On the other side, disabled individuals may be
forced to travel to other countries to obtain drugs and treatments not
yet approved for use here.
Some political decisions have directly or indirectly led to severe
disabilities. In states in which motorcycle helmet laws have been
withdrawn, increased numbers of adolescents and young adults suf-
fer brain damage and spinal cord injuries. Factory workers and
miners are employed in OSHA-approved environments which di-
rectly cause lung and skin disorders. Federal subsidies support the
tobacco industry after the Surgeon General labels cigarettes a lead-
ing cause of cancer and heart and lung diseases. Not all political
decisions are rational!
The most important health care decision — who should live — is
made by a variety of people, using moral, social, political, and eco-
nomic criteria. Our ethical values and legal system lead us to abhor
death regardless of cause: homicide, suicide, accident, disease, or
disability. We declare suicide a violation of mental health laws as we
gradually move toward the abolition of capital punishment. Even if
liberty and the pursuit of happiness are severely compromised, life
must be preserved. That decision has been made.
Sophisticated medical practices allow us to decide for life. In-
creasing numbers of individuals now defeat catastrophic diseases and
injuries, to survive with severe disabilities. Physicians, assisted by
respirators, monitors, pacemakers, and a supermarket of pills, cap-
sules, and injections, can maintain vital functions even after meaning-
ful brain activity has ceased. All of us are potential Karen Quinlans!
Historically, physicians, backed by the courts if necessary, have
made the life-and-death decision. Recently, however, we have begun
to move away from physicians as final arbiters of life-and-death deci-
sions. States are providing legal guidelines that allow individuals
and family members to decide whether to accept or continue heroic
measures in the case of severe disability or terminal illness (Heifetz,
1978). We have not fully resolved some of the problems resulting
from this change in who the decision maker is; lawyers, physicians,
theologians, families, and individuals struggle daily to reach deci-
sions about quality of life, on when to discontinue heroic measures,
on when organs can be removed for transplantation (Rosenberg &
Kaplan, 1979).
No matter who makes decisions or what criteria are used, pa-
140 Institutional and Bureaucratic Contributions
tients must, in a very literal sense, live with the consequences of the
decisions. For the disabled, more health care decisions are made by
more people, the decisions have more severe and far-ranging conse-
quences, and the disabled are less involved in the decision-making
process.
Substantive Decisions in Health Care for the Disabied
The first and most important decision is whether and to what degree
treatment will be available. Not all disabling conditions can be cured
(e.g., renal failure) or even stabilized (e.g., diabetes). Some disabling
conditions can only be cured by creating other disabilities: excising
spinal tumors may result in paralysis; removing a cancerous larynx
means speech will be lost. Some disabilities can be treated only
experimentally. In certain types of cancer the cure may be worse
than the original disease. Society decides what diseases and disabili-
ties will receive the most attention. We, as individuals, respond to
appeals for support from some disability groups and reject appeals
from other disability groups.
The second decision is whether treatment will be sought. The
poor frequently do not seek medical care: they have little medical
knowledge; they cannot affort to pay; they have no medical facilities
available to them (Mechanic, 1972). Consequently, they may become
disabled from relatively mild conditions that were left untreated or
were treated too late. Congenital or early childhood disabilities, es-
pecially retardation, may go unrecognized and therefore untreated.
Unusual conditions may not be detected at an early stage by over-
worked public clinic doctors and nurses. So if you must be disabled,
don't be poor!
If medical care is sought, the disabled must decide where to
receive treatment. Consider, for example, the decision to enter a
hospital. No matter how ill I feel, I cannot admit myself to a hospital;
only doctors have that authority. Once admitted, I must comply with
rules, accept suggested treatment, and generally give up my deci-
sion-making power. The physician decides when I should leave the
hospital, whether I can return home or require placement in an ex-
tended-care facility, when I should return for followup care, what
medications I should take, and so on. As a very healthy person, I
would probably allow physicians to make these decisions. But how
about the disabled? Does it work equally well for them to surrender
this much decision-making power? Usually not.
Health Care Delivet7: Problems for the Disabled 141
The disabled may well know their own symptoms and warning
signs better than most physicians, especially physicians who do not
specialize in that particular disability. Disabled individuals may
know hospitalization is required but be denied admission until
symptoms worsen and their condition becomes critical. On the other
hand, the disabled may be admitted solely for the convenience of
physicians: it is easier to treat a patient who is available 24 hours a
day, 7 days a week, even though treatment may require less than an
hour a day. For the disabled person, however, hospitalization means
time off work, extra expense, separation from family and friends, and
no control over daily life. The decision to admit is more than a
medical decision: it is also an economic, social, and political deci-
sion. Yet the disabled are not allowed to participate in the decision;
they are only allowed to suffer the consequences.
Another important decision is what treatment will be provided.
For most medical conditions there is more than one appropriate
treatment (Barger, 1978). One may, for example, treat cancer by
chemotherapy, radiation therapy, or surgery. Who decides? Physi-
cians. For example, when possible, specialists treat laryngeal cancer
surgically. I asked an otolaryngologist what happens when patients
refuse surgery, insisting instead on radiation or chemotherapy. The
response: no patient had ever refused surgery; all patients willingly
surrendered their voiceboxes to the knife. How can this be true?
Physicians can present the treatment alternatives in such a way that
there is no decision to be made. The patient is co-opted.
When treatment will be provided is another important decision.
Medical care is a five-days-a-week proposition. Hospitals and clinics
are, for all practical purposes, closed on weekends. Physical therapy
facilities darken at five each afternoon. Chemistry labs refuse to draw
or analyze blood after the regular workday. Only emergency X-rays
can be done after the day shift goes home. Because the disabled may
need these services every week, or even daily, it is difficult for them
to be employed and still get medical care.
Not all decisions which must be made are urgent, yet most are
treated as if they were. For example, a friend who discovered a
lump in her breast had difficulty finding a surgeon who would
operate in two stages: biopsy the lump and, after the results were
discussed with her, jointly decide whether to proceed to a radical
mastectomy. Most physicians seem to have the motto "My way or
the highway." If the disabled want treatment, they must accept
physicians' timetables.
The decisions which have led to medical specialization in this
142 Institutional and Bureaucratic Contributions
country have a widespread impact on the disabled. Individuals with
multi-system problems frequently feel as if they are dissected, defec-
tive parts whisked off to appropriate repair shops, and then only
casually reassembled before return to the community. Specialists
often find the medical problems of the disabled uninteresting or too
challenging. Few plastic surgeons enjoy repairing the decubitus
ulcer of the quadriplegic. Parents may find it impossible to locate a
dentist to treat their retarded or emotionally disturbed child, much
less one with special skills. Psychiatrists asked to treat psychotic
dialysis patients hesitate to prescribe psychotropic medication be-
cause they lack knowledge of drug excretion routes in renal failure.
The primary physician may decide not to refer a disabled patient
to a specialist. A deaf person may live with a badly scarred face
because a physician decided that being attractive was not important
to the deaf; quadriplegics may be celibate because they were not
referred for sex counseling; the blind may show marginal psychologi-
cal adjustment because they received no psychological support when
blindness struck.
For the disabled, a major problem occurs when rehabilitation
goals are decided by staff members and presented to patients as if
engraved on tablets of stone. Patients have not been allowed to
participate in the goal setting but, should they refuse to participate
in the program, they are labeled as "unmotivated" and summarily
discharged.
Some of the most important decisions are those involving pay-
ment for health care. Disability is outrageously expensive, with al-
most everything costing more. Yet we have decided that individuals
must pay for their own care and that of family members.
The widely publicized problems of job discrimination and pub-
lic transportation are addressed elsewhere in this text (Chapters 9
and 10), but hidden health care costs force the disabled into lives of
economic slavery. Job discrimination creates both decreased ability
to pay for medical care and increased personal cost of medical care.
Most able-bodied workers participate in employer-subsidized health
insurance plans. The unemployed disabled pay the total insurance
bill, if they can obtain insurance at all. Some employers decide
against hiring or retaining disabled workers because group insurance
plans will not provide coverage.
Decisions about medication costs also cause severe problems for
the disabled. Physicians, faced with hundreds of new medications
each year, prescribe the product of the most recent salesman — by
brand name. Only recently have consumers reduced drug costs by
demanding prescriptions by generic name. For some disability
Health Care Delivery: Problems for the Disabled 143
groups, however, only one manufacturer produces the appropriate
drug. The pharmaceutical company divides research and production
costs by total units sold, and volume alone is not sufficient to reduce
price. Similarly, minimal competition in production and sales in-
flates the cost of adaptive equipment. Special diets or food supple-
ments may severely strain family budgets: the disabled pay extra for
salt-free butter and vegetables, low-protein bread, and special formu-
las. In a population in which dietary compliance is a necessity for
functioning more fully in society, proper nutrition unfortunately
often becomes a luxury.
Those who schedule medical appointments sometimes act as if
their goal is to have disabled patients in the hospital or clinic five
days a week. Physical therapy is scheduled Monday, Wednesday,
and Friday; speech therapy, however, is available Tuesday and
Thursday. Someone decided on that schedule, and the disabled suf-
fer the consequence. They eventually become unable to work and
still receive medical care.
The disabled also find themselves paying for defensive medical
practices. Test and procedures are prescribed to protect physicians
from possible malpractice suits. If the disability is particularly inter-
esting, additional procedures may be ordered solely to satisfy the
curiosity of physicians or to settle academic arguments. We have not
yet decided to restrain malpractice suits or to establish effective con-
trol, via lay review, of medical costs.
In some cases, diagnostic procedures or treatments are not pre-
scribed because patients cannot afford to pay. Although many dis-
abled individuals and their families would benefit from psychother-
apy, they must weigh the cost of outpatient treatment against the
cost of physical therapy. The disabled may volunteer for research
projects solely to reduce the cost of their medical care. Obviously,
we have not yet decided to pay for socialized medicine. And as
health care becomes more specialized, the cost of adequate care
rises astronomically.
Some of the decisions about health care for the disabled affect
all disability groups, albeit differentially. All disabled individuals are
affected by the expense; many are affected by architectural barriers;
most are affected by medical practices specific to their disability
group.
To fully understand the problems of health care for the disabled,
one must focus on a single disability. Only then do generalities be-
come painful specifics. Only then can one see the effect of health
care decisions as they ripple out beyond medical care. Thus we now
turn to the problems of end-stage renal disease (ESRD).
144 Institutional and Bureaucratic Contributions
End-Stage Renal Disease as Prototype of Health Care Services
for the Disabled
Because many readers may be unfamiliar with ESRD a brief medical
review is needed. ESRD is nondiscriminatory: it strikes young and
old, rich and poor, male and female. It may result from genetic con-
ditions such as polycystic kidney disease, chronic medical conditions
like diabetes or spinal cord injury, unwise acts like heroin or aspirin
abuse, or its cause may never be determined. Onset may be gradual
or acute.
The diagnosis of ESRD was a death sentence until the develop-
ment of chronic hemodialysis in the early 1960s. With the reprieve
came the multiple complications of this new treatment. The medical
community reached into its bag of tricks and produced yet another
miracle: kidney transplantation. Not one but two technologies were
now available. Life can be guaranteed, at least temporarily, but the
fact that liberty and happiness are compromised becomes obvious
when the options are examined more closely.
Chronic Hemodialysis
In the early days of dialysis, the politics and economics of health
care were such that the number of patients whose lives could be
saved greatly exceeded available equipment. Those whom society
valued less, those already disabled, the elderly, the crippled, the
retarded, the emotionally disturbed, were denied treatment. No one
felt comfortable making decisions that were, in effect, death sen-
tences (Simmons, Klein, & Simmons, 1977). The health care system,
or society in general, had to respond.
In 1972 the federal government agreed, through the Chronic
Kidney Disease Amendment to the Social Security Act (Public Law
92-603) to pay for dialysis: equipment, space, personnel, medication,
almost everything. Naturally, dialysis facilities expanded at a rapid
rate. Now every patient who can benefit from dialysis is able to
receive this life-saving treatment. Today more than 40,000 patients
are dialyzed to maintain life; the numbers increase yearly (Chyatte,
1979). We decided to make available and even to pay for treatment of
a single disability. The problems of health care for dialysis patients
have been solved. Right? Wrong!
Although ESRD patients are frequently led to believe that dialy-
sis will return them to a reasonable approximation of good health,
few dialysis patients feel well (Chyatte, 1979; Czaczkes & DeNour,
Health Care Delivery: Problems for the Disabled 145
1978). Most are chronically anemic, chronically depressed, have dry
skin, itch unbearably, and are always thirsty. They take as many as
50 pills per day, some to counteract the side effects of others. Their
diet rigidly limits protein, sodium, potassium, and fluid intake (my
patients joke that, if it tastes good, spit it out, it's not on your diet).
Some develop gastrointestinal complications, especially bleeding.
Blood-access sites become infected or clot off. Some develop prob-
lems secondary to their kidney disease: brittle bones break easily;
hearts become pathologically enlarged. Most experience decreased
sensation in their extremities from peripheral neuropathy. Male di-
alysis patients are frequently impotent; few can father children.
ESRD does not provide immunity from other diseases or disabilities;
dialysis patients also contract cancer, arthritis, ulcers, and spinal cord
injuries. Finally, dialysis patients die much sooner than their healthy
peers.
The dialysis procedure, repeated two or three times a week for
three to eight hours per session, takes place in a hospital, free-
standing facility, or at home. If travel to a dialysis center is required,
routine treatment may require 20 to 25 hours per week. For life. Lib-
erty is severely curtailed. Vacations must be planned far in advance
and scheduled near dialysis facilities that accept transient patients.
Before dialysis begins, one or two large needles (a colleague
calls them sharpened pipes) are inserted into a surgically prepared
access site, usually in the arm or thigh. The patient's blood flows, via
clear tubing, to an artificial kidney, where waste products and water
are removed; the cleansed blood is then returned to the patient's
body. Dialysis patients who can't stand the sight of blood are in real
trouble!
As they dialyze, patients may experience severe cramps through-
out their bodies, become nauseated and vomit, and develop hypoten-
sion. They may have seizures or cardiac irregularities. Other patients
in the room may also be experiencing these things. Imagine spend-
ing four hours watching your blood circulate outside your body
while the person next to you vomits! Many patients feel extremely
weak when they finish dialyzing; some have difficulty stopping
bleeding from their access sites. It is difficult to pursue happiness
when you feel rotten! Happiness becomes a smooth dialysis run
(Chyatte, 1979).
Problems also exist for staff members on dialysis units (Kerr,
1977; Rustad, 1980). People enter clinical medicine to help people
return to health. When a patient does not improve, the professional
has failed. Yet dialysis is not a cure; it is palliation. Not only do
146 Institutional and Bureaucratic Contributions
patients fail to improve after the initial stabilization, they eventually
die under your care. Staff members become frustrated, depressed,
and angry.
The frustrations of staff are frequently directed toward patients,
especially those who repeatedly abuse diet and fluid restrictions or
medication schedules (Brown, 1979). The staff expects patients to be
independent in their daily lives but dependent during the actual
dialysis procedure: a classic double bind on both sides. And because
they spend so much time with each other, patients and staff develop
close relationships; they soon learn to hurt each other by attacking
the most vulnerable spots.
Because the technology is so readily available, staff members
may be obligated to dialyze patients who have a very slight chance of
survival. Dialysis is an uncomfortable procedure at best, and nurses
may feel they are inflicting futile and unnecessary torture. Only very
special nurses can work in a dialysis unit. Even they burn out quite
rapidly (Figgins, 1979a, 1979b).
Home dialysis is available to provide treatment more conven-
iently and economically and to avoid some of the problems of deal-
ing with staff members and rigid schedules. Patients and their
spouses learn to operate their own dialysis equipment. But many
patients are ineligible because they have no partner to assist them,
have medical complications during dialysis, or have other disabilities
like blindness. If the spouse is employed outside the home, patients
are requesting their mates to assume another half-time job, without
pay of course. Landlords sometimes will not allow the plumbing and
electrical modifications that must be made to set up the equipment at
home. Only recently have dialysis patients been able to contract with
nonfamily members to do the procedure in the home. Even when
home dialysis works well, the spouse is under substantial stress
(Abram, 1977; Czaczkes & DeNour, 1978); home dialysis is the only
exception to the rule that medical personnel do not provide care for
family members.
Many dialysis patients are physically unable to work. For others,
especially those with limited education and few marketable skills,
securing a job that will both pay more than disability income and
allow the required time off work for dialysis and routine medical
care is impossible. Dialysis patients are truly representative of the
financial disincentives to work.
The restrictions of life on dialysis cause great stress for patients
and their families (Chyatte, 1979; Reichsman & Levy, 1977). The
dialysis regimen is particularly stressful for adolescents and young
adults (Drotar & Ganofsky, 1976). At these life stages, social activity
Health Care Delivery: Problems for the Disabled 147
revolves around places that are off-bounds for dialysis patients: the
local pizza and fast food places or discos. Others may interpret the
multiple needle marks on a teenager's arm as evidence of drug use.
Sexual functioning may be delayed or diminished.
ESRD has an unpredictable course: patients move rapidly from a
state of chronic ill health to acute, life-threatening crises. It is diffi-
cult for patients to predict from one day to the next how they will
feel. How then can they plan for the immediate, much less the long-
range future? All dialysis patients treated at a particular facility know
each other very well. They see fellow patients die and know their
own death may occur at any time, without warning; the life-death
continuum becomes distorted (Pattison, 1978).
Most of the cost of dialysis, $25,000 to $30,000 per patient year,
is paid by Medicare and other governmental agencies. At some point
in the near future it is highly likely that Americans will begin to
question the return on their tax dollar (Simmons, Klein, and Sim-
mons, 1977). Unless costs can be reduced, dialysis programs may be
severely curtailed. Costs could be substantially reduced if the profits
of those supplying equipment and service were controlled. Oil com-
panies are not unique in needing windfall profits taxes!
By now it should be obvious that dialysis does not solve the
problems of ESRD. It does keep patients alive, and it must be worth-
while, for patients are not forced to begin dialysis or to continue
dialysis once they have begun (Oberley & Oberley, 1979). Most con-
tinue dialyzing until they die from causes beyond their control.
However, some patients do not adapt to or succeed on dialysis (Levy,
1979). For them the only alternative to death is transplantation. But
that transplantation has its own problems is easily demonstrated.
Kidney Transplantation
The 16,400 ESRD patients who had opted for kidney transplants by
1975 (Simmons, Klein, & Simmons, 1977), and those transplanted
since, hoped to avoid the medical complications, the highly restric-
tive medical and dietary requirements, and the time and discomfort
of chronic hemodialysis. Children and adolescents hoped to avoid
the severely stunted growth of chronic renal failure. Adults hoped to
regain sexual ability and to have children. All hoped to avoid the sick
role, to become healthy once again.
Deciding to get a transplant is a stressful process, further com-
plicated by different orientations among medical staff. Nephrolo-
gists who run dialysis programs strongly advocate their therapy;
they see the transplant failures as they return to dialysis, sometimes
148 Institutional and Bureaucratic Contributions
in worse condition than when they left. Transplant surgeons, who
tend to see only those patients who decide against dialysis, strongly
advocate their therapy. Both specialists follow the medical progress
of their own successes and see only the failures of the other. Pa-
tients must make their own decisions, often in the face of conflict-
ing advice.
Obtaining kidneys for transplantation presents unique ethical
and moral dilemmas for patients, their families, and society at large.
Uniform criteria for determining death are not yet established, but
families of the acutely ill are asked to donate organs before their
injured spouse, parent, or child has ceased to breathe. This is a very
difficult decision to make (Rosenberg & Kaplan, 1979).
Since grafts from living related donors are considerably more
successful than those obtained from cadavers, family members may
be under great pressure to donate their kidneys. The surgeon who
removes a healthy kidney from a healthy patient is practicing very
unique medicine. Some donors have developed complications from
this surgery; a very small number have died. The psychological
problems of kidney donation and transplantation have been thor-
oughly explored by Simmons, Klein, and Simmons (1977), a text
which should be required reading for all concerned with problems in
health care for the disabled.
After transplant surgery, the graft may fail to function, may func-
tion at marginal levels (chronic rejection), or may function well for a
period of months to years before it rejects. When rejection occurs,
patients must return to dialysis, perhaps awaiting another donor.
Even with successful transplants, patients are not completely
healthy. The immunosuppressive drugs to prevent rejection of the
foreign tissue increase susceptibility to infections, bloat the face, and
may cause cataract formation and diabetes. Some of the problems of
the original kidney disease are stopped but not reversed by trans-
plantation. Although transplantation does not totally remove disabil-
ity, research evidence indicates that patient satisfaction with the
quality of life is quite high (Simmons, Klein, & Simmons, 1977;
Sophie & Powers, 1979).
In many ways, ESRD patients are at the forefront of medical care
for the disabled. They are unique in that their care is fully subsi-
dized. Their treatment procedures are rapidly being improved and
the quality of their lives is substantially better now than it was only 5
years ago. But they are still second-class citizens. They are still de-
nied full lives, especially if they are on dialysis. They still have little
happiness and little liberty. Many problems remain to be solved.
Health Care Delivery: Problems for the Disabled 149
Conclusion
Solutions to the problems faced by the disabled in obtaining medical
care require attack on at least three fronts: prevention and cure of
disabling conditions, financing health care, and changing social sys-
tems and values.
The ideal solution would be to prevent or cure disabling condi-
tions. Mandatory screening programs for early detection could sig-
nificantly reduce the disabling consequences of conditions such as
lead poisoning and glaucoma; they have already succeeded in reduc-
ing the severity of retardation from phenylketonuria. If the use of
seat belts were mandatory, thousands of disabilities would be pre-
vented at absolutely no cost.
Massive changes must occur in the allocation of our health care
dollars. Socialized medicine, or at least insurance against cata-
strophic illnesses, seems inevitable. The legislation which covers
ESRD patients may serv^e as a model for other disabilities. Disabili-
ties must not automatically result in poverty. The disabled cannot
continue in economic slavery while physicians live in luxury and
drug companies show obscene profits. The families of the disabled
must be paid for the health care they provide if we expect them to
continue to provide service. If society decides to keep the disabled
alive, it must also decide to allow them to live reasonable lives.
The puritan work ethic and our national obsession with beauty
and health must fall before the disabled can participate fully in soci-
ety. We must learn to value people for their abilities rather than pity
them for their disabilities. Communities must become both physi-
cally and psychologically accessible.
Many high schools now have handicap days, when students
attend classes and participate in school activities in wheelchairs, on
crutches, or with blindfolds or hearing dampeners. Such activities
sensitize them to the daily living problems of the disabled and
allow schools to identify barriers to full participation by handi-
capped students. The mainstreaming movement, which requires
children to be educated in the least restrictive environment, is rap-
idly making the handicapped visible in society. They are no longer
hidden away in special schools and workshops. Soon they will ride
our buses, work in our factories, and marry our sons and daughters.
Are we ready?
Ultimately, the disabled must accept some limitations on their
liberty and their happiness. The question is how much liberty and
happiness can be made available, how soon, and at what cost.
150 Institutional and Bureaucratic Contributions
References and Bibliography
Abram, H. S. Survival by machine: The psychological stress of chronic he-
modialysis. In R. H. Moos (Ed.), Coping with physical illness. New
York: Plenum, 1977.
Barger, S. L. Personal-professional support: From a patient's point of view.
In C. A. Garfield (Ed.), Psychosocial care of the dying patient. New
York: McGraw-Hill, 1978.
Benoliel, J. Q. Care, communication and human dignity. In C. A. Garfield
(Ed.), Psychosocial care of the dying patient. New York: McGraw-Hill,
1978.
Brown, C. J. Chronic non-compliance in end-stage renal disease: Assess-
ment and intervention. Dialysis and Transplantation, 1979, 8, 1210-
1214.
Chyatte, S. B. On borrowed time: Living with hemodialysis. Oradell, N.J.:
Medical Economics, 1979.
Czaczkes, J. W., & DeNour, A. K. Chronic hemodialysis as a way of life.
New York: Brunner/Mazel, 1978.
Drotar, D., & Ganofsky, M. A. Mental health intervention with children and
adolescents with end-stage renal disease. International Journal of Psy-
chiatry Medicine, 1976, 7, 181.
Figgins, N. Burn out. Dialysis 6- Transplantation 1979, 8, 1011. (a)
Figgins, N. Prevention of burn out. Dialysis 6- Transplantation 1979, 8,
1222. (b)
Heifetz, M. D. Ethics in human biology. In C. A. Garfield (Ed.), Psychoso-
cial care of the dying patient. New York: McGraw-Hill, 1978.
Kerr, N. Staff expectations for disabled persons: Helpful or harmful. In R. P.
Marinelli and A. E. Dell Orto. (Eds.), The Psychological and Social
Impact of Physical Disability. New York: Springer, 1977.
Levy, N. B. Psychological factors affecting long term survivorship on hemo-
dialysis. Dialysis 6- Transplantation 1979, 8, 880-881.
Mechanic, D. Public expectations and health care. New York: Wiley-
Interscience, 1972.
Oberley, E. T., & Oberley, T. D. Understanding your new life with dialysis,
2nd edition. Springfield, 111. Charles C Thomas, 1979.
Pattison, E. M. The Living-dying process. In C. A. Garfield (Ed.), Psychoso-
cial care of the dying patient. New York.: McGraw-Hill, 1978.
Reichsman, F., & Levy, N. B. Problems in adaptation to maintenance hemo-
dialysis. In R. H. Moos (Ed.), Coping with physical illness. New York.:
Plenum, 1977.
Rosenberg, J. C., & Kaplan, M. P. Evolving legal and ethical attitudes to-
ward organ transplantation from cadaver donors. Dialysis ir Transplan-
tation 1979, 8, 906-907.
Rustad, L. C. Facilitating communication: An aid to effective treatment on
the renal dialysis unit. In M. G. Eisenberg, J. Falconer, & L. C. Sutkin
Health Care Delivery: Problems for the Disabled 151
(Eds.), Communication in a health care setting. Springfield, 111.:
Charles C Thomas, 1980.
Schmale, A. H., & Patterson, W. B. Comfort care only: Treatment guidelines
for the terminal patient. In C. A. Garfield (Ed.), Psychosocial care of the
dying patient. New York.: McGraw-Hill, 1978.
Simmons, R. G., Klein, S. D., & Simmons, R. L. Gift of life: The social and
psychological impact of organ transplantation. New York.: Wiley-
Interscience, 1977.
Sophie, L. R., & Powers, M. J. Life satisfaction and social function: Post-
transplant self-evaluation. Dialysis 6- Transplantation 1979, 8, 1198-
1202.
12 Families of the
Disabled
Sometimes Insiders in
Rehabilitation, Always
Outsiders in Policy Planning
Betty Goldiamond
The Patient's Family: At Risk, but Disenfranchised
This chapter is concerned with a category of people who have no
identity as members of a group but who have in common the charac-
teristic of close relationship to persons who have suffered a spinal
cord injury. I have belonged to this category since 1970, when my
husband was injured in an automobile accident. Persons like me do
not often know each other, nor do others recognize us as individuals
who share special interests and concerns. We have produced no
spokesmen to describe our everyday lives, our sorrows, our hopes,
our needs and efforts. Nor have we developed advocates, for we have
no group organizational objectives and no programs. Though we
have experienced similar personal and family disruptions and though
we have social, psychological, and economic problems in common,
we have yet to define these and to develop systems of mutual aid or
self-help. If severely disabled people, like the spinal cord injured,
are second-class citizens, we, their family members, are truly second-
The author wishes to express her gratitude to Juhe Bulfer, Muriel Beadle, Mary
Keenan, and Jeannette Taylor, who read and carefully criticized the original draft of
this chapter. The continuing support and interest of my husband, Israel Goldiamond,
and daughter, Shana Goldiamond, are much appreciated, as are the contributions
made by all those other professionals, handicapped persons, and relatives of the dis-
abled who have shared their thinking about their own experiences with rehabilitation
with me during the years just past.
152
Families of the Disabled: Rehabilitation and Policy Planning 153
class citizens once removed. Even to ourselves we have been invisi-
ble and voiceless.
The implications of my lack of status as a person with legitimate
interests in rehabilitation processes did not begin to become appar-
ent to me until the summer of 1976. At that time, I requested and
received an application form to attend the Illinois Conference on
Handicapped Individuals. This conference was organized as part of
the preparation for the first White House Conference on Handi-
capped Individuals, which occurred in May 1977. The publicity for
the Illinois meeting announced discussion sessions and lectures that
appeared to be of vital interest to me, as was the fact that state
delegates to the White House Conference would be selected by
those attending. To my surprise, I discovered as I filled out the
application form that the conference planners did not have partici-
pants like me in mind. To apply for an admission card, I was re-
quired to categorize myself as being either (1) a handicapped person,
(2) the parent of a handicapped child, or (3) a provider of services for
the handicapped. Though I did not fit into any of the prescribed
categories, I returned the application and was, indeed, allowed to
attend the state conference. There I discovered that if I had wanted
to go to the White House Conference as a delegate from Illinois, I
failed to meet the qualifications established. Candidates had to be
selected from the three categories listed above.
Illinois was not singularly perverse in this regard. I learned later
that the official conference announcement booklet. The White House
Conference on Handicapped Individuals (1976), stated that "... 50
percent of the 672 State delegates are to be disabled, 25 percent to
be parents or guardians of handicapped individuals, with the remain-
ing 25 percent to include others involved in research, labor, service
delivery, medical, legal, advocacy and the broad variety of activities
surrounding the needs and concerns of disabled persons." Invited
nonvoting observers included representatives from national provider
and consumer organizations, the fields of both business and labor,
and directors of state programs in rehabilitation, developmental dis-
abilities, education, and mental health. Governors, directors of sig-
nificant federal programs and members of Congress also received
special invitations (White House Conference on Handicapped Indi-
viduals, 1977). Everybody with a legitimate interest was represented
there except those who share the bed or are the children, brothers, or
sisters of the handicapped.
This same strange omission came through clearly in the Imple-
mentation Plan, published in June, 1978, as Volume Three of the
Final Reports of the Conference (White House Conference on Han-
154 Institutional and Bureaucratic Contributions
dicapped Individuals, 1978). The report begins with a statement
about priority action items identified by the National Planning and
Advisory Council from among the 810 recommendations and 142
resolutions passed by the delegates to the White House Conference.
The first priority action item calls on the Administration to move
immediately to formulate and issue a strong statement of national
policy to ensure that individuals with disabilities may participate
fully in our society with full enjoyment of its benefits, and it urges
that, in the formulation of policy, the Administration shall include
"Individuals with disabilities, their parents or guardians, and their
organizations" [italics added].
Following immediately after the above is priority action item
two, recognition of the unique needs of individuals with disabilities.
This recognition of needs is said to be "... a requisite for imple-
menting the concept of independent living in the least restrictive
environment ..." [italics added]. Surely the people who prepared
the implementation plan knew that the large majority of severely
disabled persons, and, certainly, of those with spinal cord injuries,
are not living independently but instead are living by their own
choice with the families of which they are part. Why do the writers
resort to the semantic camouflage provided by the phrase, "indepen-
dent living," when the real goal for the disabled — as for the nondis-
abled — is a fulfilling and satisfying interdependence with others?
Why the diversion of focus from the need for socially assisted living
through the development of community support networks which but-
tress, supplement, and extend the care available from the families of
the disabled?
To be sure, the White House Conference on Handicapped Indi-
viduals marked a significant advance in federal recognition of the
needs and rights of the handicapped, a major step toward reorganiza-
tion and coordination of programs affecting them, and a milestone on
the way to increasing their options. It also widely publicized a shift
in public policy which has been going on for almost two decades,
that is, the change from emphasis on support of segregated institu-
tionalization of the disabled to support of mainstreaming and com-
munity living for the majority of the handicapped. It is encouraging
that the special problems of handicapped individuals are being re-
cognized and addressed in a comprehensive manner at the federal
level, with broad citizen participation in the planning process. But
why does that citizen participation not include some input from
those of us who live with handicapped persons? Why are we ex-
cluded from the process of public policy formulation? Our lives and
futures are also on the line.
Families of the Disabled: Rehabilitation and Policy Planning 155
When did anyone ever ask the following questions? What effects
will this policy — or procedure — or whatever, have on the handi-
capped person's family as a unit, as well as on the handicapped
individual? What will be the consequences of the new tax law, or of
the new Social Security, or Workers' Compensation, or SSI, or Medi-
caid regulation, with regard to the work, savings, or consumption
decisions of those who share a household with the handicapped per-
son and are intimately concerned? Will the approach strengthen or
weaken family ties and, thereby, the preexisting primary supports for
the disabled member?
Further, and in a different vein, is anyone who represents the
handicapped's families monitoring the economic changes that are
accompanying the shift from institutionalization to community liv-
ing? Is it possible that a larger share of the cost burden is being
shifted from the public to the private sector, and, most significantly
for us, to the individual family? Is it conceivable that, though patient
welfare is the avowed objective, limitation or reduction of the public
debt is in fact the primary motivation for some of the current changes
in policy toward the handicapped?
The answers to such questions are not readily available. It is
clear, though, that some practices that have peculiar and, sometimes,
destructive effects on the family life of the disabled have been set in
place. For example, a few years ago the press gave some attention to
the case of the young quadriplegic man who was living indepen-
dently in his own apartment and who fell in love with and married
his female attendant. The public aid program of the Midwestern
state in which they resided promptly stopped paying her wages,
since the relative responsibility laws of that state forbade that a
spouse be paid for attendant care for which public aid could pay a
nonrelative. The consequence for that couple was a financial im-
passe for which the solution was divorce.
In further illustration of the kinds of hardship families face
under current regulations, consider the following case of two recent
patients of the Rehabilitation Institute of Chicago. The circum-
stances are similar in the two families, except for the fact that one
young disabled woman has a higher cervical injury than the other
and, on occasion, requires respiratory assistance. Neither is fully in-
dependent with regard to eating and personal grooming, and each
requires help with turning in bed at approximately two-hour inter-
vals throughout the night. Neither is able to transfer from bed to
chair without assistance. In both cases the disabled individual is
living at home with both parents and several younger siblings, and in
both cases, the mother of the individual is working outside the home
156 Institutional and Bureaucratic Contributions
as a registered nurse. One young woman is receiving Supplemental
Security Income and some daytime attendant care, while the other
receives Social Security Disability Insurance benefits. The mothers
continue to work because the families need the income they earn
and because they are acutely conscious of the importarice of retain-
ing the Social Security disability and retirement benefits that accom-
pany their employment, as well as their own health insurance pro-
grams. But how long will those mothers, even with the occasional
assistance of other family members, be able to endure the physical
strain? How many years can a person work all day and then suffer
interruption of sleep every night? Does it make sense in the long run
that these mothers are forced to work outside the home rather than
being eligible for compensation while working at home, where their
skills are needed and they could take a nap now and then?
Our current sytems of health care and social security are set up
in such a way that they create real insecurity for many family care-
givers, and, in the long run, cannot be seen as assuring maintenance
of the disabled member's welfare. Problems like the above, which in
no way exhaust the range of difficulties families face, must be
brought to public attention before our present "support" systems
become more firmly established.
Research about Family Response to SCI
Effects of Trauma on Family Members
For the most part, the relatives of the spinal cord injured are silent,
as are the victims themselves. I have found no autobiographical ma-
terial written by family members, with the exception of a short piece
called "Family Reactions to Quadness: Told by Two Families"
(Brennan & Davis, 1973). Although there can be little doubt that the
experience of having a spouse, a child, a sibling, or a parent suffer a
severely disabling accident causes profound and far-reaching life dis-
continuities for most of us, it is necessary to search long and hard
before locating material specifically devoted to SCI families and
their responses to trauma. One startling exception is Act of Love: The
Killing of George Zygmanik (Mitchell, 1976). This book tells the
story of the trial of Lester Zygmanik for the intensive-care mercy
killing of his newly quadriplegic brother, George. It describes most
powerfully the initial disturbed behavior of a family member who,
fortunately for other SCI victims, reacted to the shock of spinal cord
injury in a manner more extreme than do most relatives.
Families of the Disabled: Rehabilitation and Policy Planning 157
Family Relationships as Factors in Adjustment to SCI
Spinal cord injury victims' families appear to be as infrequently tar-
geted for research investigation as they are for the attention of action
agencies. In her book The Psychological, Social, and Vocational Ad-
justment in Spinal Cord Injury: A Strategy for Future Research
Trieschmann (1978) emphasizes the inadequate nature of existing
information about family relationships as factors in the adjustment to
cord injury. She says, "There is no article or research project which
deals with the reactions of parents to their teenagers or young adults
who suffer spinal injury. What little has been written deals with
issues of satisfaction within marriage for disabled groups in general
and statistics on marriage and divorce among veterans with spinal
injury." Continuing, she notes that though there have been refer-
ences to the role reversals which cord injury may impose on couples
when the husband is injured, there is not at present any firm sup-
porting data. With regard to marital adjustment in spinal cord injury,
Trieschmann cites a study by Kerr and Thompson (1972) which
found that the financial security of the couple was an important fac-
tor and that all the SCI in their sample who were rated as having
made an excellent mental adjustment to injury had satisfactory lives
prior to injury and most came from exceptionally warm and loving
backgrounds.
Thus far, Trieschmann asserts, the major studies of marriage and
divorce rates of the SCI are based on data collected on veteran popu-
lations and thus may not be representative of the civilian SCI popu-
lation, since the relative financial security of service-connected vet-
erans puts them into a special category. El Ghatit and Hanson (1975,
1976) found in a study of pre-injury marriages that 26.7% of the men
who had been married at the time of injury were divorced at the time
of the study, and of this group of divorced men slightly more than 75
percent reported that the injury had played an important part in their
divorce. The divorce rate for those who married after onset of SCI
was slightly but not significantly lower (24.6%), and of those di-
vorced, only 41% thought that the spinal injury was a significant
factor in the divorce. In both cases, that is, for both pre- and post-
injury marriages, the divorce rate is lower than the base rate for the
United States as a whole, which is 33%, and significantly lower than
the current 50% rate in California, where most of the subjects of the
study live.
Deyoe (1972), reporting similar data for veterans in the north-
eastern United States, found that marriages which followed injury
158 Institutional and Bureaucratic Contributions
were more stable than marriages which had occurred prior to the
injury, but that for the sample as a whole, separation rates were
lower than in the general population.
A Theoretical Framework for Evaluating Family Changes
Cogswell (1976), in a data-based longitudinal study of family changes
in response to spinal cord injury, was alert to the fact that it is diffi-
cult to make generalizations about the impact of major illness or
long-term disability on families, because most of the existing re-
search is limited to the study of single types of disability or is cross-
sectional, describing family reactions at one phase of patient care or
rehabilitation, or is concerned with effects on behavior patterns
within the family when the disabled member has a particular role
within the group such as child, breadwinner, wife, or grandparent. In
an effort to develop a conceptual approach of general applicability to
the heterogeneous situations in which the family experiences the
disability of one of its members, she proposed that the family be
viewed as a group, a small social system in process of change. She
developed a working analytic framework that permits longitudinal
comparisons of a single-family system as it changes over time or
cross-sectional comparisons of different families, and she applied it
in the study of 12 households, seven of which had a cord-injured
member, over a two-to-three year period.
She found that, with one exception, the families she studied as
they adjusted to the disability of a member tended "to be adaptive,
to take on group goals, to move toward more flexible role structures,
to use antecedent and current experiences and future expectations as
a basis for action, and to manifest changes over time in the perme-
ability of their boundaries." In the process of adaptation, each family
passed at its own pace through broad stages, which Cogswell defined
as crisis, transition, temporary stabilization, and readaptation. At
each of these stages, changes were occurring in family system prop-
erties, including general system characteristics, structures, goals,
roles, and boundaries.
Commonly, family members initially responded to the occur-
rence of trauma with the assumption that the injured member would
either die or make a complete recovery. Only in the later stages of
adaptation did family members seriously consider the possibility of
permanent disability. Acceptance of the family member as being dis-
abled developed very gradually during the final adjustment periods.
Immediately after onset, family members tended to coalesce into
Families of the Disabled: Rehabilitation and Policy Planning 159
a group focused on a single goal, the care and rehabilitation of the
injured person. The group was highly permeable to outsiders, like
professionals, members of the extended family, neighbors, and
others who offered help. Family members put aside their individual
pretrauma goals and eliminated many of their usual everyday activi-
ties. During the early convalescent period, almost all family mem-
bers over the age of six contributed to the care of the disabled mem-
ber, with little attention being paid to the traditional division of labor
along sex and age role lines. Gradually, however, the performance of
the necessary tasks involved in the care of the disabled person be-
came better defined and routinized. Eventually, the diffuse family
responsibilities were transferred to a single caretaker; if family com-
position made it possible, the caretaker was always a woman. Once
the caretaker role was established, other family members were able
to resume many of their precrisis outside roles, in addition to taking
on some of the necessary responsibilities of the precrisis roles of the
disabled person and the caretaker. Family concern slowly began to
focus on handling financial problems and the social and psychologi-
cal consequences of disability for themselves as well as the disabled
individual and the usual problems of other individual members of
the family. Nevertheless, the disabled member and the caretaker
remained the hub around which other members of the family organ-
ized their own lives, with somewhat reduced openness to the pres-
ence and assistance of outsiders.
Cogswell found that regardless of the many variations between
the families prior to the disability, most of the families showed evi-
dence of residual change in role flexibility; group cohesiveness, di-
rection, and goals; and more problem-solving and self-regulatory be-
havior. This study has provided a conceptual framework which may
be useful to professionals who are trying to orient themselves to
family clients, as well as factual information about the growth that
many disabled persons and their families exhibit under stress. It
should serve as an antidote to the more common emphasis on the
psychological and social disturbances produced by trauma.
Family Members Talk about Things That Are on Their Minds
Organization of an SCI Family Group
The following is an impressionistic report on my observation of SCI
family members who attended group meetings held for relatives of
patients at the Rehabilitation Institute of Chicago between 1975 and
160 Institutional and Bureaucratic Contributions
1978. Attendance at these meetings, held weekly, was entirely vol-
untary, and there was no charge to participants. The service, called
"Families Helping Families," (Taylor & Keenan, 1978) was planned
and carried out by a certified social worker and a registered nurse
who, between them have about 30 years of experience in SCI reha-
bilitation. Planning of the purposes and activities of the group was
done with the assistance of other professional staff. Such persons
were occasionally invited to attend meetings, as were a few former
patients who had acquired experience living in the community and
several close relatives of former patients.
It was in the latter capacity that I was asked to attend the
meetings and contribute to discussion. Sometimes I think that the
main thing my presence accomplished was communication of the
information that individuals who have spinal cord injuries can, and
often do, live a long time. When I would be introduced as the wife
of a very active, employed, former patient who was injured in 1970,
there would always be some relative present who would stare at me
in shocked disbelief. It takes weeks, or even months or years, for
family members to be convinced that the injured may survive as
long as, or perhaps longer, than they themselves do. And em-
ployed? Impossible. . . .
The main objective of the group was to provide a setting in
which family members had the opportunity to meet and share ideas
with others who were going through similar experiences and who
had like concerns. Further objectives were the provision of informa-
tion through the informal use of professional staff, referrals to appro-
priate agencies and individuals both within the Rehabilitation Insti-
tute and in the community, teaching materials of various kinds, and
"models," that is, the family members and the former patients who
had mastered some common problems.
Attendance at family group meetings, as at other events offered
as supportive services for patients' relatives, was somewhat ad-
versely affected by the fact that third party payers and public
agencies do not provide reimbursement for family travel costs, baby
sitters, or loss of salary. Nevertheless, over a period of 3 years, 227
family members related to 137 patients attended at least one group
meeting. Some attended as many as eleven times. Parents were pre-
sent four times more frequently than those having other relationships
to the patient, and the attendance of mothers was twice that of
fathers. Attendance by relatives of quadriplegics was more than
double that of relatives of paraplegics. Family members were hetero-
geneous in race and social class, coming from occupations as varied
as farming, heavy industry, and the professions, and from areas as
Families of the Disabled: Rehabilitation and Policy Planning 161
diverse as Chicago's southside ghettoes, the elegant North Shore
suburbs, and the flat Midwestern prairies. Almost all the relatives
were taking their patients home for weekend visits and were trying
to learn how care could best be carried out.
The sessions were held in a comfortable conference room,
around a table. Most of the meetings were only loosely structured, a
result of an unfortunate experience with a lecture meeting early in
the history of the group. At that time, a resident was invited to speak
on spinal cord injury. He arrived with models of the spinal column
and slides in hand and for two hours presented an excellent descrip-
tion of the physical events characterizing cord injuries. Since there
was no time left for questions that evening, discussion was post-
poned until the following week. When the group leader asked for
reactions to the lecture, there was an ominous silence. Then some-
one said, "I went home and cried all night. I just could not get to
sleep." Someone else affirmed that the same thing had happened to
her, and then a third participant said, "Those things couldn't be true
of my husband; he's getting so he can feel me touch his left foot."
The final comment was, "I didn't need to hear all that about sex. My
patient here is my 80-year-old mother, and the last thing in the world
that we're concerned about is sexuality."
After that the group leaders decided that they would proceed
without formal lectures, but, instead, would deal with questions
raised by members of the group, allowing the family members to
take the discussions in the directions they wished. This decision was
based on the recognition that the relatives were at very different
places in their understanding of, and response to, their patient's in-
jury and rehabilitation, as well as on the conviction that the most
effective teaching is that which is individualized.
The atmosphere of the meetings was usually relaxed. Possibly
most of the family members in attendance felt that they were doing
the best they could under conditions that all recognized as adverse.
They had already proved their competence in many ways. Small
achievements in the patient's progress toward recovery or in the prep-
arations of the home for his return were always the occasion for cele-
bration. And when participants looked around the table, they knew
that they were not alone in either their rejoicing or their frustrations.
In the group, it occasionally happened that family members who ap-
peared to be apathetic or hopelessly immobilized found encourage-
ment to voice a problem that turned out to be common: "I don't know
what to ask." Once it was discovered that others felt equally at a loss,
problems could be articulated and solutions considered.
Sometimes the mood of a session turned even cheerful. Strange
162 Institutional and Bureaucratic Contributions
as it may seem, with all the problems they were facing, family mem-
bers in the group laughed a lot. Perhaps the easy laughter was a
measure of the tensions aroused by discussion, but in any case, it
helped people talk and exchange ideas and, occasionally, offer sug-
gestions and criticisms. One meeting became positively jolly after a
woman whose 15-year-old son was quadriplegic as the result of a fall
out of a tree told about bringing her 90-year-old father-in-law to visit
at the Rehabilitation Institute. The father-in-law, who had lived in
her household since he had a leg amputated at the age of 80, had
been complaining and fretting about his bad luck for the preceding
10 years. After his visit to RIC, she avowed, he had not said one
single word about how bad off he was. . . . She was finally, and unex-
pectedly, freed from his constant litany of complaints! Though such a
story would not seem funny to outsiders, the reaction to it demon-
strated the kind of perverse joking that rehabilitation insiders can
indulge in among themselves. That father-in-law finally had gotten
the putdown he had long deserved. . . . But hadn't she gone a little
too far to achieve quiet in the house? . . . Of course, everyone present
felt a guilty recognition of the old man as a kindred spirit, for on
occasion each of us had similarly fallen silent in recognition that
somebody else was a lot worse off than we were.
Problems Expressed by Family Members
The kinds of concerns that were brought up in meetings fell into
several major clusters. Perhaps the most commonly mentioned were
those centering around the injured members' medical problems and
their management. Parents of quadriplegics were worried about such
things as whether their disabled child would be able to adjust to the
extremes of heat and cold we experience in the Midwest and about
how they should handle matters if he had difficulty breathing,
choked on food, had hyperreflexia, or had severe spasms. Everybody
worried about possibile urinary tract infections, decubitus ulcers,
problems with bowel and bladder care, and how to handle accidents.
Some were concerned about the possibility that whatever mainte-
nance drugs their relative required would interfere with his perfor-
mance at school or on a job. Others were upset because of the in-
jured member's weight loss or continuing depression. Some reported
that in spite of paralysis the patient experienced troublesome pain,
either constantly or occasionally. In many instances, the patient had
multiple injuries as a result of the accident that produced the spinal
insult, and these always complicated recovery and produced much
anxiety. Sometimes fusion or other surgery was anticipated, and
Families of the Disabled: Rehabilitation and Policy Planning 163
family members would wonder how this would affect the patient's
subsequent care. Some patients needed a body brace, special equip-
ment, or prosthetic or orthotic devices others did not need, and this
usually created requests for explanations and reassurance. In the
same way, the differential progress of patients in their bowel and
bladder management programs produced very real worries. Others,
looking ahead into the future, wondered if they could rely on their
usual family doctor for their patient's medical needs after the return
home and what they should do in case unforeseen crises occurred.
Though the relatives usually seemed to have a good understand-
ing of the medical problems surrounding the injury, many continued
to be unwilling to accept the prognosis of lifelong paralysis and ex-
pressed in various ways their belief that there would be more return
of function. A minority of relatives did not really grasp what had
happened or understood or felt able to undertake some aspects of the
continuing care. One woman from rural Mexico believed that the
body has only a limited amount of blood that must last it forever, and
that when blood was drawn from her son for diagnostic purposes, it
should be replaced. Others were reluctant to learn techniques sych
as digital stimulation to cause movement of the bowels or the cathe-
terization procedures that are essential to the maintenance of the
quadriplegic in the home. Still others, who had back troubles them-
selves, feared the lifting tasks — with good reason.
Though most relatives felt that they had had satisfactory contact
with the physicians, nurses, and other members of the professional
staff, a few complained of difficulties in getting answers to questions
that, to them at least, were urgent. An occasional relative complained
of having been told brusquely, "too soon," that the patient would be
paralyzed for life and a few others that they had not been able to get
any firm prognosis at all. Another infrequent complaint, and this is of
a most serious nature, was that the patient's vertebral injury had not
been recognized in the emergency room of the hospital the patient
had been taken to. Sometimes the cord injury itself might have been
averted if the appropriate stabilization procedure had been carried
out immediately.
Another cluster of concerns centered around the preparation of
the home, whether the injured member planned to live with the
family or out in the community on his own. Here the problems fell
into two major groupings, the necessary alterations of the physical
environment and the perceived difficulties in the social environment.
With regard to home modification, decisions were greatly af-
fected by financial status and by the injured individual's prognosis
and plans for the future. A few patients' homes were already virtually
164 Institutional and Bureaucratic Contributions
barrier-free, whereas other patients came from walkup apartments or
Hved in certain projects run by the Chicago Housing Authority,
where visiting nurses associations and home health service providers
will not allow their personnel to go for safety reasons. Others lived in
split-level houses, in homes with all the bedrooms on the second
floor, or in houses situated on a dune or on a steep hillside. The
family members had to consider not only how extensive but also how
permanent the home modifications needed to be. For example, some
expected their injured sons or daughters to live with them for only a
few months or a year, while they waited for college acceptance or
found their own jobs and apartments. Of course, others postponed
making changes because they were sure that the patient would be
back on his feet and doing everything in a normal manner before the
year was over.
Technology exists in abundance for building ramps, installing
lifts, making bathrooms usable for the wheelchair-bound, and alter-
ing kitchens. So do remarkable assistive devices of various kinds.
The problem is that all these things cost money, and most families
have limited resources. Sometimes moving appears to be the sim-
plest solution, but here family members must deal with the fact that
barrier-free housing is in short supply and also tends to be expen-
sive. In addition, there is usually some psychological resistance to
undertaking the major task of moving and getting settled in a new
community when the family yearns to retain their ties with old
friends and familiar places. Each patient and his relatives must con-
sider these decisions with care. The patient's weekend visits to his
own home can be a real help in deciding what to do. On these
occasions, the modifications which are absolutely necessary rapidly
become apparent, and the whole family usually discovers that they
are a lot more ingenious than they had ever realized they were.
Perceived problems in the social environment are of a different
order altogether, in that there are only rarely any simple solutions
available. In some cases there are simply not enough able-bodied
persons present in the household to carry out the home care prop-
erly. For example, one mother whose 19-year-old son is quadriplegic
found it nearly impossible to look after him on his weekend visits
home, even though she had several other of her children living with
her. It turned out that the older brother, who had been very close to
the injured youth, "took off for Wisconsin" every weekend; he just
could not bear to be around his brother now. The 17-year-old son
was willing to help, but he was brain damaged and "had a plate in
his head," and the mother feared that he was not capable of carrying
out procedures correctly. He was allowed to turn his brother at two-
Families of tlie Disabled: Rehabilitation and Policy Planning 165
hour intervals during the night, but afterward he always awakened
his mother to ask her if he had done the turning correctly. The
14-year-old daughter was also cooperative and had gone to the Reha-
bilitation Institute to be instructed in bowel and catheter procedures,
but the mother had reservations about allowing the daughter to carry
out intimate care for her brother.
In other instances spouses were concerned about the already
poor health of the one who was undertaking the primary care-giving
duties, or about the possibility that the constant strain would simply
wear the caregiver down.
In several cases family members discussed either the reluctance
of the disabled individual to accept help from particular persons who
were closely related and available or the reluctance of other family
members, especially younger ones, to give assistance. Some were
concerned that the children in the family appeared to be apathetic,
either not caring about or not understanding the gravity of the pa-
tient's condition. On the other hand, others reported that the chil-
dren were so distressed that they were bringing home poor marks in
their schoolwork for the first time in their lives. Some said that col-
lege-age family members were afraid they would have to drop out of
school to help out, and, of course, that fear was not always un-
founded. In one extreme case, the father simply disappeared, aban-
doning his wife and three children, including a newly quadriplegic
son.
It was not uncommon for a participant to bring up fears of social
isolation, either for the injured one or for the family. Perhaps he had
noticed that friends had stopped casual visiting, seemed to be avoid-
ing the family, or were awkward in conversation with them. Perhaps
the grandparents had not come to see the patient in the hospital and
rarely telephoned, even though they were retired and had plenty of
time and money to help out a bit. Several couples worried because
they noticed that the person whom their injured child had been
planning to marry before the accident was visiting less and less fre-
quently or was going out with another person. Even restaurant din-
ners that family members shared with the patients could be the occa-
sion for new concern, because they believed that strangers in such
public places were trying to avoid them, or they felt that the disabled
member was embarrassed and feared the reactions of others.
Another kind of worry was not that of isolation but of being
overwhelmed. Sometimes the expressed concern was related to busy-
body neighbors, who insisted on watching from behind the curtains
while family members tried, self-consciously, to transfer their quad-
riplegic youngster out of a station wagon and into the wheelchair.
166 Institutional and Bureaucratic Contributions
Some resented neighbors and relatives who were sincerely trying to
help but were getting in the way of the injured one's necessary care
during the short visits home.
Problems in interpersonal relations between the newly disabled
individual and the family caregivers were occasionally described.
These often involved the caregivers' efforts to exert some kind of
discipline over the disabled when they were not acting in what the
relatives considered to be their own best interests. Some fathers
brought up the fact that their adolescent sons' closest friends liked to
come over and take them out drinking on the Saturday nights when
they were home from RIC. If the group did not get in until 3 A.M.,
the parents endured hours of torture and were uncertain as to
whether they should treat their sons as they would have prior to the
accident or overlook their behavior. One woman said that her dis-
abled son had been so "fresh" to her that she could hardly bear it,
but she had hit him in retaliation only one time. Another said that
her disabled spouse drank too much and then turned mean, and tried
to run her down with his electric wheelchair; she did not know how
to handle this. Others were concerned about the injured one's de-
pression, as expressed in unwillingness to eat, to participate in
family activities, or to do anything but lie in bed watching television.
One husband complained because his wife, an incomplete quadri-
plegic, seemed to be more dependent on him than she had to be. If
he refused to feed her when she was home on a visit, she threw the
plate of food at him. Thus problems like alcoholism or intergenera-
tional or marital conflict which existed within the family prior to the
occurrence of the injury sometimes seemed to be exacerbated under
the stresses of post-injury readjustment. Members of the group occa-
sionally expressed the opinion that participation in the group had
helped alert them to this possibility and prepared them to cope with
incidents in a more understanding manner.
Another whole group of problems centered around resources in
the community, what they are, where they are, and how access to
them is gained. Family members often had only vague information
about agencies active in their area or services that could be provided if
they made their needs known. As in the case of the questions centered
around modification of the physical environment, there are some
straightforward answers to such questions. However, they are not al-
ways satisfactory in individual cases because of service gaps or eligi-
bility requirements. Sometimes the conclusions that emerged from
the group were like the following: "We really ought to get organ-
ized— we need a buyers' cooperative." "I'm going to talk to my alder-
man about curb cuts." "I know Ruth wants to keep up with the friends
Families of the Disabled: Rehabilitation and Policy Planning 167
she's made here. Why don't we work out a transportation pool so the
kids can attend courses at the community college together?"
These then are the kinds of things that relatives of SCI patients
talk about when they are preparing for the patient's release from the
hospital. In the report on their experience with the SCI family group,
the two professionals who conducted it for several years summarized
in the following words: "We have been impressed with the insight
and innate sensitivity displayed by family members who have only
life experiences and none of the professional credentials. The
strength of human beings to cope and survive is repeatedly demon-
strated in the group for others to take from for their own use." (Tay-
lor and Keenan, 1978)
When the patient's transition to the home has been completed,
the family moves into another phase, one in which it may assist the
disabled individual's re-entry into the larger community. The various
tasks family members undertake are essential to the rehabilitation
process for the very severely injured, for without them, many more of
the disabled would live out their days in nursing homes. However, it
should be understood that the family members gain as well. They are
facing their problems together, and that is what really matters.
Summary and Conclusions
The SCI constitute a special category among the disabled, a category
that requires special study and perhaps differential treatment from
that accorded the disabled in general. As a result of changes in medi-
cal and rehabilitation technology, the numbers of SCI survivors are
increasing, and their life expectancy has been extended. It is their
fate to be paralyzed for life, some from the neck down, others less
extensively. Most are dependent on others in varying degrees for
assistance with aspects of their everyday care. Nevertheless, with
appropriate modification of the environment, many can and do work
and otherwise carry on near-normal lives.
By custom and by law, the nuclear family has primary responsi-
bility for the care of its disabled members, insofar as handicapped
individuals need assistance of any kind. When a spinal cord injury
occurs and the patient is necessarily immobilized for a lengthy pe-
riod of time, the family generally serves a liaison function, helping
the patient connect with the requirements of the unfamiliar new
world within the hospital, as well as with people and events having
significance for them on the outside. Though the disabled experi-
ence abrupt discontinuities in their customary social roles, their
families often assist in their resocialization into whatever new roles
168 Institutional and Bureaucratic Contributions
they are able to assume, given the limitations imposed by their in-
juries and a generally unprepared environment.
Financial problems are frequently a source of major concern.
The disabled individual and his family are responsible for paying for
hospital and rehabilitation care. However, since the costs are high
and other costs related to the injury will continue throughout the
lifetime of the disabled, many families are forced to seek assistance
from the public programs for which they can establish eligibility. At
this point, if not before, they discover the inequities inherent in our
current systems of health care and become familiar with the limits
placed on rehabilitation by the inadequacies of the various public
"support" systems.
After their discharge from the hospital or rehabilitation center, a
relatively small number of the SCI choose to live alone in the com-
munity, and some few go into nursing homes, but the majority return
to home and family. When they are unable to attend completely to
their own needs, some member of the family, usually a woman, may
assume the role of primary caregiver. Thus this person may be forced
to withdraw from the labor force, with the result that the family's
financial resources and provisions for Social Security undergo further
reduction.
For those disabled persons who are able to and who wish to
resume work, educational, and other activities outside the home,
family members frequently act as ombudsmen, exploring the options
available in the community and supporting the disabled as they ven-
ture out into what often appears to be an insensitive and frustrating
world.
For both the disabled and their families, the tasks of adjusting to
a spinal cord injury require prodigious expenditures of effort — physi-
cal, psychological, social, and economic. It is abundantly clear to
those who are acquainted with the everyday problems of SCI care
that the family itself is often at risk. Its current resources are usually
strained to the limits, and the future of the entire family, particularly
the well-being of the disabled and the primary caregiver, are sources
of continuing concern.
Unfortunately, there has been very limited scientific investiga-
tion of either the effects of cord injury on the disabled individual's
family or of the family's role in the rehabilitation of the disabled
member. Nor has much research attention been devoted to assessing
the impact on the family as a whole of current public policies toward
the handicapped. By and large, the targeted outcomes of public in-
terventions are the changes defined as desirable for handicapped
individuals, and data collection and program evaluation are organ-
Families of the Disabled: Rehabilitation and Policy Planning 169
ized accordingly. Thus far, the additional consequences for others
who are intimately concerned with the welfare of their disabled rela-
tives are not being monitored. The little research that bears on this
question seems to indicate that most families manage to stay together
and to cope somehow, but that the price of coping under current
conditions is very high.
Up to the present, families of the SCI have not organized exten-
sively for purposes of defining and remedying their special common
problems or trying to achieve public recognition of their needs, nor
have they been formally represented in the councils where public
policies are formulated. Recognition of the right of family members
to participate at all levels in the planning of policies affecting not
only the lives of handicapped individuals, but also their own, is a
matter of first-order importance. Some basic issues, including the
division of responsibility for assistance of all kinds to the severely
disabled, deserve reconsideration. If, on careful study of the conse-
quences of various care systems for all concerned, the encourage-
ment of home- and community-based care remains a major objective
of the rehabilitation system, the following questions must be faced
squarely: Who cares for the family caregivers? In what ways can and
should the larger society contribute to their welfare, both now and in
the days to come?
References and Bibliography
Brennan, D., & Davis, D. Family reactions to quadness: Told by two fami-
lies. Rehabilitation Gazette, 1973, 16, 34-37.
Cogswell, B. E. Conceptual model of family as a group: Family response to
disability. In G. L. Albrecht (Ed.), The sociology of physical disability
and rehabilitation. Pittsburgh: University of Pittsburgh Press, 1976.
Deyoe, F. Marriage and family patterns with long-term spinal cord injury.
International Journal of Paraplegia, 1972,10, 219-224.
El Ghatit, A., & Hanson, R. Outcome of marriage existing at the time of a
male's spinal cord injury. Journal of Chronic Disease, 1975, 28, 383-
388.
El Ghatit, A., & Hanson, R. Marriage and divorce after spinal cord injury.
Archives of Physical Medicine and Rehabilitation, 1976, 57, 470-472.
Kerr, W., & Thompson, M. Acceptance of disability of sudden onset in para-
plegia. International Journal of Paraplegia, 1972, 10, 94-102.
Midwest Regional Spinal Cord Injury Care System. Progress Report VII,
1978. Chicago: Northwestern Memorial Hospital (Wesley Pavilion) and
the Rehabilitation Institute of Chicago, 1979.
Mitchell, P. Act of love: The killing of George Zygmanik. New York: Knopf,
1976.
170 Institutional and Bureaucratic Contributions
Taylor, J., & Keenan, M. Families helping families. Paper presented at the
Annual Meeting of the American Congress of Rehabilitation Medicine,
New Orleans, 1978.
The White House Conference on Handicapped Individuals. Washington,
D.C.: U.S. Government Printing Office, 1976, 0-218-920.
The White House Conference on Handicapped Individuals. The National
Newsletter. Washington, D. C: U. S. Government Printing Office,
1977, 0-228-502.
The White House Conference on Handicapped Individuals. Volume Three:
Implementation plan. DHEW Publication No. (OHDS) 78-25512. Wash-
ington, D. C: U.S. Government Printing Office, 1978.
Trieschmann, R. B. The psychological, social, and vocational adjustment in
spinal cord injury: A strategy for future research. Easter Seal Society
for Crippled Children and Adults of Los Angeles County, Final Report,
Rehabilitation Services Administration, 1978, 13-P-59011/9-01.
Ill
Coping with Physical
Disability
Even with a complete analysis of society's responsibility for the sec-
ond-class status of the physically disabled, our task is not complete.
What remains is a very difficult, yet necessary, effort to understand
disabled individuals so as to help them toward the most positive
life-style possible. It is not enough that societal discrimination is
lessened or even eliminated; if the individual remains fearful, de-
pressed, or hopeless, additional efforts are required to make that
person as fully functional a member of society as possible. No mat-
ter how well-prepared the social environment, disabled individuals
must still make major readjustments in their feelings, thoughts, atti-
tudes, and behavior. Thus, at some point, our focus must be on the
particular person who is himself disabled. This shift in focus, from
society to the individual, does not mean that social influences on the
physically disabled person are ignored. Instead, it means that both
social and individual factors are recognized as central determinants
of how well or how poorly the disabled person will cope.
Viewing disability from an individual perspective brings the re-
habilitation process into a position of importance in our discussion.
Rehabilitation, by definition, concentrates on the individual's adjust-
ment. This view is necessary, because the sociological perspective
can minimize the contributions of the individual by focusing only on
the social aspects of disability. The successfulness of adjustment
any disabled individual makes is not solely a function of social-
ecological factors. Coping and adjustment are fights that are indi-
vidually fought, too. Because rehabilitation programs are efforts to
promote individual coping, these programs must play a central role
in any social-psychological approach to physical disability.
The purpose of this part is to examine how individuals cope with
the physical, psychological, and social problems of physical disabil-
ity. Suggestions are made to help disabled individuals in the adjust-
ment process. In his chapter (13), Duval traces the development of
171
172 Coping with Physical Disability
psychological theories of disability and emphasizes the increasing
recognition of social factors and therapeutic approaches in these
theories. Slucki (Chapter 14) examines specific behavioral methods
demonstrated to be effective in dealing with the individual psycho-
logical problems accompanying physical disability. In Chapter 15 on
chronic pain and disability, Nehemkis and Cummings describe the
complex interaction of individual and social influences in such prob-
lems. They make recommendations for decreasing the role that insti-
tutions play in creating and maintaining the problem of chronic
pain.
Although this part is grounded in a behavioral orientation, we
recognize the potential of other approaches to make significant new
contributions to dealing with physically disabled individuals. Cur-
rently, however, the behaviorists are the only group taking both indi-
vidual and social factors into account and translating this under-
standing into effective treatment modalities.
13 Psychological Theories
of Physical Disability
We IV Perspectives
Richard J. Duval
In the past few decades the importance of psychological variables in
the rehabilitation of the physically disabled has been increasingly
recognized (Cruickshank, 1971; Wright, 1960). As a result, psycho-
logical theories of disability have come to play a unique and essen-
tial role in rehabilitation efforts. Understanding human behavior by
means of psychological theories is essential "... to assure that the
expense and effort of rehabilitation do not go to waste because of
patients' poor psychological adjustments to their physical condi-
tions" (Shontz, 1978, p. 251). Unfortunately, empirical data by which
to directly evaluate the psychological theories of disability and reha-
bilitation remain scarce. Gathering the necessary data in methodo-
logically sophisticated ways has begun only recently (Treischmann,
1978). Until the time that sufficient research is complete, the process
of helping disabled individuals "to learn to live again" must be
largely based on educated theoretical hunch rather than established
psychological fact.
Despite this present dependence on theories, attempts to pro-
vide needed psychological services to the disabled must certainly
continue. A proper course to take in such unsettled waters is a care-
ful scrutiny of the theories used in rehabilitation planning. Part of
this scutiny should include a judgment of each theory's adherence to
formal criteria such as logical consistency, clarity of terms, deductive
capacity, and parsimony. Another important yardstick in evaluating
theories is the empirically proven utility of the treatments that each
theory suggests. Clinical utility cannot prove the validity of a theory,
of course, but it can act as evidential support for it. Thus both formal
The author wishes to express his appreciation to Don Weinstein and Jim Murray for
their help in both conceptual and literary areas.
173
174 ' Coping with Physical Disability
and empirical criteria are important in making comparisons among
psychological theories of disability.
Unfortunately, a sort of "personality split" has become apparent
within the field of rehabilitation psychology. This split is based on
the fact that different people in the field have different needs they
want filled by a theory. Theoretically oriented workers, who desire
to explain how and why stable patterns of behavior occur in disabled
people, usually prefer theories that emphasize unique individual
variables. Mental processes and personality structures within the
person have traditionally been the constructs these theories have
used. Generally, the formal criteria mentioned above have been the
only yardsticks by which these theories were evaluated. Those
workers most interested in clinical treatments for the psychological
problems of disabled people have focused on theories which speak
more directly to rehabilitation. Rather than trying to explain how the
person has come to act and feel a certain way, these clinically ori-
ented theories emphasize the methods by which new and beneficial
psychological changes can be brought about. In these theories, the
individual's adjustment is usually explained in terms of social and
environmental factors external to the person. Empirical demonstra-
tions of the utility of treatment procedures are the most valuable
criteria for judging theories from this point of view.
This difference in theoretical emphasis — explanation versus
treatment — and the accompanying differences in the evaluative cri-
teria thought most appropriate have led to much confusion in the
field of rehabilitation regarding which psychological theories are
best used. Some writers, like Shontz (1978), have tried to end this
confusion by suggesting that both types of theories are necessary and
useful. Though this is certainly true, it does not end the problem.
Only a true integration of both explanatory and clinical treatment
aspects in a single theory would be a satisfactory solution. This inte-
gration has not yet been achieved, but, as proposed later in this
chapter, Bandura's social learning theory (1969, 1977) leads the way
toward this goal. His theory allows explanations in terms of stable
cognitive processes as well as suggesting powerful treatment tech-
niques for inducing psychological change.
Before Bandura's theory is fully outlined, however, a careful
analysis of other prominent psychological theories is in order. This
analysis is meant to illustrate how the theories have changed their
main emphasis from more explanation, to treatment considerations,
and most recently toward an integration of both. To do this, each
theory of disability is evaluated regarding its adherence to both em-
pirical and formal criteria. Greater emphasis is necessarily given to
Psychological Theories of Physical Disability: New Perspectives 175
the formal aspects of theories, since proper empirical data concern-
ing the theories and therapies of disability are a recent phenomenon.
Nevertheless, some mention is made of research investigations of the
treatments each theory suggests.
An excellent survey of the trends in major psychological theories
of disability proposed in this century has been provided by Shontz
(1970, 1978). Shontz is a theoretical egalitarian, in the sense that he
considers all theories equally valid, differing only in the proper
sphere of application for each. This chapter is written from a differ-
ent viewpoint: that all psychological theories are not equally valid,
that one theory can have greater power and utility than another
across a wide variety of applications. It is this writer's contention that
certain theories do provide better explanatory and treatment per-
spectives for the field of rehabilitation than do others. The historical
survey of the psychological theories of disability to be presented
next provide evidence for this contention. Both formal and empirical
criteria are used to judge the relative values of these theories for the
rehabilitation professional.
Implicit Theories
The earliest theories of the psychology of disability were essentially
implicit theories (not formally stated, but assumed). Almost all reha-
bilitation workers have been medical personnel, concerned with the
overwhelming tasks of preserving life and health. In it the effects of
physical problems on the individual's psychological status are taken
at face value. Eliminating the physical problem is thought to end any
possible psychological difficulty. If medical procedures are unsuc-
cessful in ridding the individual of the disability, acceptance of
physical limitations is considered a naturally occuring although diffi-
cult process.
Implicit theories of the psychology of disability are essentially
drawn from common-sense notions about human behavior: widely
shared beliefs about what "should be" rather than an explicit set of
statements about actual events. As such, the formal criteria used to
evaluate theories (e.g., parsimony, logical consistency) are not appro-
priate for evaluation of these ideas.
Not surprisingly, implicit theories have many difficulties in ac-
tual application. They were overly simplistic and narrow concep-
tions, unable to account for the wide variety of human behavior and
experience. Essentially, implicit theories equate physical and psy-
chological status in a naive mind-body parallelism. Good health is
176 ' Coping with Physical Disability
thought to mean a good frame of mind. Failure of individuals to
return to normal functioning once their physical problems have been
eliminated seems impossible. Yet many individuals continue to have
psychological difficulties, even when physically restored. Further-
more, persons with continuing physical disability often function at a
much lower level than their actual physical abilities would allow.
Examples of such paradoxes for implicit theories include rejection of
physical aids by amputees, poor skin care by paraplegics, and lack of
return to work by recuperated surgical patients. What on first glance
appears to be a perfect correlation between mind and body is in fact
a mirage created by medicine's almost total focus on acute illness at
that time (Bakal, 1979). Fairly direct mind-body correlations might
adequately describe many of the acutely ill, but not the chronically
ill or disabled. For them, a return to psychological good health
would never occur simply by regaining physical health. Their physi-
cal problems must be faced for the rest of their lives; new ways of
behaving and thinking must be learned. If psychological theories are
adequately to explain the complexities of an adjustment to disability,
they must improve on the sound body-sound mind theories. Such
theories provide neither sufficient explanatory power nor powerful
treatment techniques.
Motivational Theories
Other theories were obviously needed to account for the complexi-
ties of the psychology of disability. One approach which appeared to
be appropriate was the use of motivational concepts. From this view-
point, all behavior is assumed to be both directed toward some goal
and energized by some internal motivational force or energy. Eating
and sexual behavior are two prime examples of behavior explained
by motives. Hunger and sexual drives are hypothesized to account
for such behavior. In motivational theories of disability, poor reha-
bilitation is hypothesized to be due to a lack of motivational drive
and/or lack of an appropriate goal.
Though the concept of motivation does allow a general descrip-
tion and explanation of the psychology of disability, it has many
problems in its adherence to formal criteria. The logic of motivation
is usually circular, in that the level of motivation is commonly
inferred from the person's behavior and is later used to explain that
very same behavior. For example, when a man with paraplegia due
to spinal cord injury had frequently recurring pressure sores, a lack
of motivation to take care of his skin was inferred. Poor motivation
Psychological Theories of Physical Disability: New Perspectives 177
was then pointed to as the cause of the sores. The only justification
for this inference is the behavior it was originally invoked to explain.
Essentially, it is a renaming of the behavior in mentalistic terms and
then using it as the "cause" of the behavior. Such renaming involves
analytic "truths" (i.e., are true by definition) and are therefore tau-
tologous. Certainly, it must be acknowledged that psychological
events are involved in this situation; the question is whether motiva-
tional concepts best explain them.
Other formal problems in the motivational approach include the
vagueness of motivational terminology (what would be an indepen-
dent index of motivation, and how would it differ from any other
type of motivation?) and the difficulty in making specific predictions
about the individual's reaction to disability or treatment. In addition,
it is difficult to understand how broad motivational concepts could
properly account for complex emotional, intellectual, and social be-
havior. Recognition of the influence of both environmental and com-
plex mental processes is lacking.
Also troublesome is the poor record motivational theories have
had in suggesting effective psychological treatments for problem pa-
tients. Recommended treatments have included increasing the per-
son's insight into the reasons for his or her improper level of motiva-
tion, as well as providing social encouragement in the hope that
internal motivation could be re-established. Unfortunately, these ap-
proaches have been based on an incomplete understanding of the
situation. As Shontz (1978, p. 252) notes, "In actual practice, few
patients truly lacked motivation; the problem was not usually a defi-
ciency of psychological energy, but a blocking or misdirection of it."
The numerous instances of patients strongly motivated to engage in
self-destructive or nontherapeutic activities forcefully underline this
point. Thus methods to help patients learn how to use existing moti-
vational sources seem to be the need, not methods based on the
notion of increasing or decreasing motivational levels.
The problem with the utility of these therapies is motivational
theory's emphasis on explanation, not intervention. Rather than sug-
gesting specific treatment techniques, motivational theories more
often than not provide post hoc explanations for the lack of rehabili-
tation progress among problem patients. Responsibility for such fail-
ure has been placed on the patient ("poorly motivated"), not on the
rehabilitation workers or system.
Besides this assumption of an internal locus of causation, motiva-
tional theories also incorporate the idea that specific negative psycho-
logical effects necessarily follow disability. This has not been the case
with the implicit theories; they have been quite vague as to the par-
178 \ Coping with Physical Disability
ticular effects of disability. Now, physical disability is seen as induc-
ing a specific result: a lowering of motivational energy for proper
goals. How "proper" goals are defined is not questioned. At this early
period in rehabilitation efforts, the disabled individual's competence
to decide what was proper or desirable has not been considered.
Many of the motivational problems could have been easily translated
into problems of reconciling different viewpoints on what the appro-
priate goals of rehabilitation are. To workers at this time, the common
assumption that serious psychological problems necessarily exist as a
result of any physical loss make the motivational explanation appear
to be the more plausible of the competing interpretations.
Once motivational theory formally incorporated this idea, a new
way of looking at physical disability began. Previously, physical disa-
bility had been considered to be much like any other stressful event,
such as the death of a loved one, a financial loss, an acute illness, or a
divorce. A "normal" reaction to any of these involves sadness, anger,
or frustration, followed by a period of recuperation. With the rise of
explicit psychological theories, the psychological effects of physical
disability were now considered unique, different than reactions to
any other stress. Very specific negative psychological effects on the
disabled person were theorized to set him apart from the able-
bodied. The commonalities disabled individuals share with the able-
bodied were no longer emphasized or investigated. One result of this
emphasis on the uniqueness of disability was the proposal that spe-
cific personality types accompany specific physical disabilities
(Wright, 1960). Thus not only were the disabled psychologically dif-
ferent than the able-bodied, but they were also seen as different
according to their particular disability type. This view was widely
shared by rehabilitation workers for many years; it was not until
recently that mounting evidence (Shontz, 1970) led to an abandon-
ment of this position.
Motivational theories were early, unsophisticated attempts to ex-
plain the psychological effects of disability. Since they had many
difficulties in meeting both formal and empirical criteria, the emer-
gence of new competing theories was not surprising.
Psychoanalytic Theory
Problems in the theory and clinical applications of simple motiva-
tional concepts led to a relative vacuum in the psychology of disabil-
ity. Into that void quickly came psychoanalytic theory. Sigmund
Freud, the originator of this theory, hypothesized that behavior is a
Psychological Theories of Physical Disability: New Perspectives 179
result of a dynamic interplay of instinctual drives, defense mecha-
nisms, and reality-based pressures. It is asserted that an understand-
ing of this dynamic and the history of the person allows one to ex-
plain the often irrational aspects of human behavior.
The use of psychoanalytic theory in rehabilitation efforts be-
comes possible only with the translation of the previous motivational
problems into mental health problems. This translation seems quite
natural, as it appears that something must be wrong with the person's
mind to account for such self-defeating behavior as noncompliance
with rehabilitation efforts. Also fostering this translation is psycho-
analytic theory's extensive reliance on motivational concepts such as
drives and goals. In this way, the former problem — a depletion of
motivation because of physical disability — is easily translated into a
disease model of mental health. Problem patients become sick pa-
tients, that is, people with sick minds.
Once this recasting of the problem has been achieved, every
disabled individual is by definition reacting to his disability with
certain defense mechanisms. The individual's behavior is, therefore,
best analyzed by reference to his or her personality structure (e.g.,
oral, phallic, narcissistic) and the accompanying defense strategies
(e.g., projection, denial, reaction formation). The psychoanalytic ori-
entation strongly asserts the necessity of the person's accepting the
reality of disability. Good adjustment is possible only when built on
the individual's recognition of his or her limitations. Given this
proposition, any type of denial is viewed as a maladaptive defense
mechanism. Any denial of the reality or permanence of the disability
is thought to necessitate "working through" before the rehabilitation
process can occur. This conception of denial as a maladaptive de-
fense ignores the possible benefits it might have for the individual
(Fordyce, 1976). It is also based on a view of disability as intrinsi-
cally and completely negative (Wright, 1960). Acceptance of disabil-
ity is explicitly defined as acceptance of only the negative aspects of
what is really a multifaceted experience.
Certainly, Freud's psychoanalytic theory is a powerful one. It is
internally consistent, allows many strong deductions, and speaks to a
broad range of human experience and activity. Psychoanalytic theory
has spawned a wide range of newer theoretical positions and treat-
ments. These newer approaches have the advantage of pushing indi-
viduals to explore potentials as well as limitations. Significant prob-
lems still exist, however, in its ability to meet such formal criteria as
clarity of definitions, testability, and predictive capability. These dif-
ficulties are very similar to those of the motivational theories,
another mentalistic approach.
180 ' Coping with Piiysical Disability
Psychoanalytic theory largely ignores the role of environmental
influences on behavior by concentrating on internal mental causes of
behavior. Situational circumstances are of interest only insofar as
they reveal the working and structures of internal defenses. Even
more important than these formal difficulties, studies of actual
changes in behavior of those persons who received psychoanalyti-
cally oriented treatments have had difficulty showing any more
changes than that of individuals who have not undergone such treat-
ments (Bandura, 1969; Rachman, 1971; Rachman & Wilson, 1980).
Consequently, psychoanalytic therapy has seen great decline in use,
a trend reinforced by the expense and length of such therapy.
Psychoanalytic theory was developed as an attempt to explain
human behavior and experience. Its treatment techniques are secon-
dary appendages to the primary theoretical orientation its originators
had toward understanding human psychology. Given this emphasis,
psychoanalytic theory's difficulty in suggesting powerful and effi-
cient treatment techniques is not unexpected. The major decline in
the use of psychoanalytic treatments reflects this empirical difficulty
more than any formal theoretical weakness.
Body Image Theory
Body image theory (Schilder, 1950) is another theory that has had
some penetration into the field of disability and rehabilitation. The
basic notion in this theory is that thoughts, feelings, and attitudes
about oneself are largely determined by the perception of one's own
body. This body percept, or body image, is itself a result of the
nonverbal cues (e.g., behavior and body language) of others and
one's own physical status (size, beauty) and abilities. The body im-
age is much like a self-concept; it is hypothesized to influence both
internal mental processes and external social behavior.
From this orientation, the psychology of disability is explained
by the effect of disability on the body image. Loss of physical ability
is theorized to damage or lower the acceptability of the body image.
As a result, both attitudes toward oneself and others are changed.
Depression, denial, and anger are seen as the natural results of the
loss of acceptability of body image. Body image theory is another
mentalistic theory, in that it sees the primary causes of behavior
residing within the mind of the individual. Change in physique can
have its influence only secondarily, through its effect on the internal
body image.
The body image construct does bear some relationship to other
Psychological Theories of Physical Disability: New Perspectives 181
personality constructs and perceptual measures (Cleveland, 1960;
Fisher & Cleveland, 1968). For instance, in an investigation of cer-
tain personality correlates of children's perceptions of human size,
Beller and Turner (1964) found that autonomous achievement striv-
ing was significantly related to the accuracy of normal children's
perception of their own and other people's sizes. Studies of the body
image or self-concept of disabled people have also been conducted
(Richardson, Hastrof, & Dombuster, 1964; Simmel, 1966). Although
it appears that changes in self-perception do occur following disabil-
ity, the exact type or direction of these changes is difficult to specify
with body image theories. Different people change their self-
perceptions of their bodies in different ways after disablement. Also,
it is difficult to know the cause-and-effect relationship in these
changes: Which comes first, the changed body image or the other
cognitive and affective changes following disability? And even if the
exact order of events can be determined, this cannot be assurance
that changes in body image caused other cognitive changes; both
could be coeffects of a third event.
Some of these difficulties stem from the confusion over what a
body image is. It has resisted attempts to arrive at clear and acceptable
operational definition. Moreover, much confusion remains regarding
its relation with self-concept (Wylie, 1961). Finally, it seems that body
image theory has little predictive power or generality; it addresses
only a small portion of the complexities of human behavior and expe-
rience. English (1971, p. 46) states that "... it is too oblique and lacks
comprehensiveness to such an extent that it may not be a theory at
all." This is best illustrated by the considerable difficulty body image
theory has in predicting individual variations in reactions to disabil-
ity. Not everyone loses appreciation or acceptance of his body due to
disability. Many psychological and sociological variables besides just
body image are involved in determining adjustment to disability
(Kimball, 1969; Michael, 1970; Shontz, 1965).
Body image theory is another explanatory theory with secondary
interest in suggesting remediation for problems in psychological
functioning. Its usefulness for rehabilitation planning is question-
able, therefore. In its present form this theory says little about possi-
ble therapeutic activities besides restoring the individual to predis-
ability status.
The mentalistic theories already described — motivational, psy-
choanalytic, and body image — suffered major declines in popularity
and influence during the 1950s. One reason that largely accounted
for this dissatisfaction was the narrow focus of such theories on in-
trapsychic factors as the causes of behavior. Actual clinical practice
182 Coping with Physical Disability
made it clear that many other factors, external to the individual, also
greatly affect both the experience and behavior of the disabled indi-
vidual. Rehabilitation efforts seem to be as often hindered by nega-
tive social influences and physical and architectural barriers as by
improper psychological adjustment. In addition, such narrow focus
on mentalistic factors has made rehabilitation efforts very difficult. A
combination of explaining human behavior with mentalistic con-
structs and providing little practical guidance for effective rehabilita-
tion made the mentalistic theories difficult to use in a rehabilitation
setting. Yet the decline in these theories' popularity has not been
due to a widespread disregard for the role of internal processes; it
has been a backlash against theories inappropriate for practical reha-
bilitation programs.
Sociological Theories
With growing awareness of the importance of social factors in reha-
bilitation efforts came a new trend in thinking about physical disabil-
ity. Theorists began emphasizing the role of social influences in their
accounts of the psychology of disability. Thus the pendulum had
swung from the former extreme — sole reliance on mentalistic con-
cepts— toward another extreme — sole reliance on social and environ-
mental concepts. This position generally holds that illness and disa-
bility are not absolutes but are defined relative to present social
norms of health and disease. According to this view, once an individ-
ual's physical problem has been socially defined and sanctioned via
the medical profession, he or she begins to act in accordance with
the expectations other people have for that specific "sick role" (Par-
sons, 1964). A role is defined as the enactment of a set of behaviors
related to social status. Adjustment to disability is therefore seen as a
role response to social attitudes and behavior rather than to the
physical disability itself.
One well-known example of the explanatory power of social role
theory is the "requirement for mourning" (Barker, Wright, & Go-
nick, 1953; Wright, 1960). In the social role of acquired disability, all
individuals are expected to play a sad, frustrated, mournful role in
reaction to their condition. When they do not exhibit these behav-
iors, pressure is often applied to make the disabled person ac-
knowledge their loss in socially prescribed ways (Goldiamond, 1976;
Wright, 1960). Much of the conflict in rehabilitation settings can be
attributed to persons who do not exhibit this socially expected
mourning.
Psychological Theories of Physical Disability: New Perspectives 183
Undoubtedly there is a general tendency toward increased de-
pression and anxiety within the physically disabled group immedi-
ately after injury and during rehabilitation (Kemph, 1967; Warren &
Weiss, 1969). Expectations of uniform psychological processes
within all individuals of each disability type are nevertheless unreal-
istic. A very wide variety of individuals becomes disabled. Simply in
terms of their diverse histories these individuals would be expected
to have many different learned preferences for dealing with stress
and loss. The evidence gathered concerning individual reactions to
disability is clear (Shontz, 1978). Diversity not uniformity or even
specificity by disability type is the rule. It is evidence of the power
of social expectations rather than an indication of uniform adjustment
following disability that the "requirement for mourning" should con-
tinue within rehabilitation settings.
With such sociological theories as Parsons' (1964) sick role the-
ory and Mechanic's (1962) illness behavior concept, a significant
change had occurred in the whole approach to disability. For the first
time the environmental influences acting on the person and the overt
behavior of the individual had become prime variables of interest.
Attitudes and behavior of the able-bodied society were now being
considered the central determinants of the psychological status of
disabled persons. No longer did problems of adjustment exist solely
within the person's mind.
Despite this change of focus, however, sociological theories
have a number of deficits. From a formal criteria perspective they
have great difficulty accounting for the wide variation among the
individual reactions to disability. With the one-way direction of cau-
sality (i.e., social environment -»- behavior) that these theories posit,
individual contributions to the adjustment process are ignored. Ex-
ternal social forces are seen as blindly directing the fate of individu-
als as though they were pawns in a chess game. The possibility that
persons can have reciprocal influence (Bandura, 1977) on their social
environment, and thus on their own destiny, is not considered. As a
result, the ways in which an individual's perception, evaluation, and
behavior can themselves influence the social environment are sim-
ply ignored. Sociological theories are not useful, since they do not
specify the processes by which social roles are learned or how such
roles can be counteracted in the rehabilitation setting. Specific
recommendations or predictions about individual cases are not
made; instead, there is an emphasis on social programs to change
widespread social attitudes and behavior. The possibility of treating
individual psychological problems that result from disability is
largely ignored.
184 ' Coping with Physical Disability
Integrative Theories
Recognizing the limitations of psychological theories that utilized
exclusively mental or environmental concepts, theorists have at-
tempted to construct a single unified theory of disability that can
incorporate both types of variables. Wright's (1960) somatopsycho-
logical theory is one such attempt. She recognized the great influ-
ence that social and interpersonal factors can have on both the behav-
ior and experience of physically disabled persons. At the same time,
she contends that external influences do not act directly on the per-
son but through the mediation of internal mental processes. Wright
posits a large number of such intervening processes, including ex-
pectation discrepancy, spread, and value, which would determine
the meanings of external stimuli. Thus a person's perception of an
environmental event is not simply a mechanical response to an im-
pinging stimulus. What to one person might be a manageable prob-
lem— loss of hearing, for example — could to another person be an
overwhelming trauma. Wright is proposing that the wide differences
in reaction to the same physical event are the result of a uniquely
individual interaction of external conditions and internal mental pro-
cesses. This means that the individual's behavior can be understood
only by including both environmental and intrapsychic variables.
Despite this recognition, overt behavior itself is not the primary fo-
cus of Wright's theory. She considers subjective (mental) states such
as self-esteem to be the critical tests of psychological adjustment.
Wright's work is truly integrative and far-reaching in scope, be-
cause it speaks to the widely divergent aspects of physical disability
by its inclusion of both environmental and mentalistic variables. More-
over, Wright has a background in rehabilitation rather than in psychi-
atric or academic setting. Hers is the first major theory of the psy-
chology of disability to arise from the rehabilitation setting. Wright's
intimate knowledge of the complex issues of disability is obvious.
She has been able to expose the biases characterizing most psycho-
logical theories of disability, including the common assumption of
the totally negative character of all disability. Finally, Wright has
provided an excellent analysis of the psychological research per-
formed up until that time. The inadequacies of research performed
based on simple notions of one-to-one relationships between phy-
sique and personality or behavior have been made quite apparent in
her writings.
Despite these strengths, Wright's work cannot be considered a
true theory. A theory is a congruent set of statements about the rela-
tionships among specific empirical events. Her work lacks the overall
Psychological Theories of Physical Disability: New Perspectives 185
congruence or organization necessary for a theory defined in this man-
ner. She has introduced a sophisticated psychological framework in
which to deal with somatopsychological relationships, but the actual
canvas has been left empty, remaining to be filled. Many intervening
mental variables have been proposed by Wright to be important ele-
ments on that canvas, but in recognition of the tremendous amount of
uncertainty in the field of disability she has not even attempted a
complete organization of all the concepts she has reviewed.
Two points about Wright's work are central. First, environmental
factors are viewed as necessary and important determinants in the
psychology of disability. No incompatibility of environmental and
mental variables as psychological causes is seen. This is the first
time this integration has been accomplished in a major theory of the
psychology of disability. Second, a major bias has carried over from
the mentalistic theories — subjective states are considered better or
more truthful criteria by which to judge psychological adjustment
than is overt behavior. This mentalistic bias has remained, despite
the acknowledgement that environmental factors are powerful deter-
minants of both behavior and subjective experience. This notion of
the primacy of subjective states isolates Wright's important work
from the mainstream of experimental work in behavioral psychother-
apy which was occurring at that time.
A similar all-encompassing theory of the psychology of disability
was put forward by Meyerson (1971). Like Wright, he argued that
physical status alone cannot account for the psychological adjustment
of the individual. Individual reactions to the same physical disability
vary widely. Some people completely withdraw into the saifety of the
world of disability, but others totally reject any involvement in such a
community. Advantages and disadvantages exist for all the points
along this continuum. To account for such widely differing adjust-
ments, Meyerson has proposed that both internal and external vari-
ables interact to determine the disabled person's adjustment. Unlike
Wright, however, Meyerson feels that social factors play a much
greater role in determining adjustment to disability than do intra-
psychic factors. In support of this view, he points to evidence that
society first defines what will be considered a disability, then deval-
ues the person for only those specific physical incapacities, and finally
pressures the disabled individual to accept this devaluation. Interven-
ing mental variables are acknowledged by Meyerson to be part of the
adjustment process, but only in a secondary way. They are seen as
entering into the adjustment process only after societal pressures have
already "set up" the person. It is the individual's psychological inabil-
ity to resist social pressure toward devaluation that allows him to fall
186 Coping with Physical Disability
prey to accepting this judgment. Thus Meyerson explains the way
individuals adjust to disability primarily in terms of social factors and
only secondarily in terms of individual mental variables.
Meyerson has done an abrupt about-face, however, when direct-
ing his attention to practical aspects of rehabilitation. He recognizes
the difficulty of directly working with social attitudes and individual
beliefs and so has turned to behavior modification as an essential
rehabilitation tool. The particulars of this approach are discussed
later in this survey; suffice it to say that behavioral techniques are
not incompatible with the theory Meyerson proposed. His turnabout
is simply a movement away from difficult-to-work-with social and
mental variables toward working with the individual's observable
behavior and its relation to the environment.
Both Wright and Meyerson shared the advantages of having two
types of determinants in their theories: environmental and intra-
psychic. This has enabled them to explain many diverse psychological
phenomena, including both subjective and objective events. Yet this
explanatory power is accompanied by similarly powerful treatment
methods only in Meyerson's theory. He utilizes behavior modification
techniques not derived from his explanatory theory to provide this
treatment practicality. Thus in neither Wright's nor Meyerson's theory
is there an integration of internal and external variables into both the
explanatory and treatment sections of their work. It has remained for
others, including Mahoney (1974) and Bandura (1969), to begin this
type of integration.
Behavioral Theories
Behavioral theories are the most recent approaches to the psychology
of disability. Though they are a widely divergent group, behavioral
theories share a common heritage — the experimental learning labora-
tory. As a result, most have originated as attempts to explain animal
learning. Although modem behavioral theories have been reformu-
lated and extended to conform to human psychological processes,
their background has left these theories with easily recognizable char-
acteristics: (1) a heavy reliance on the measurement of observable
psychological phenomena such as behavior, (2) a strong tendency
toward examining environment-behavior relationships, rather than
relations between attitudes and behavior or beliefs and behavior, (3)
as little reliance as possible on inferred mental variables or hypo-
thetical constructs, and (4) an emphasis on learning as the key explan-
atory concept in the development and regulation of behavior.
Psychological Theories of Physical Disability: New Perspectives 187
Underlying this emphasis on learning is the assumption that
general laws governing the learning process can be discovered that
have broad explanatory power. Thus adjustment to disability is seen
as being governed by the same psychological principles that account
for all other behavior; both normal and abnormal behavior are as-
sumed to be similarly governed. This is not a new tact; other psycho-
logical theories have made this assumption, too. Yet, it has been only
with the ascendence of behavioral theories that strong enough psy-
chological principles (namely, those concerning the learning pro-
cess) have been available to account convincingly for the wide varia-
tions in human behavior.
Behavioral theories do not propose special personality types to
account for each type of behavioral adjustment. To explain reactions
to disability, they apply the same general learning principles used to
explain other psychological phenomena. As a result, there are no
behavioral theories specific just to disability. Adjustment to disabil-
ity is seen as only one type of psychological phenomenon explained
within the behavioral approach. Given the assumption that learning
is a principle explaining diverse phenomena, behavioral theories do
not view disability as inherently different from other types of stress
or loss. Though particular experience accompanying various stresses
may differ in specific content or degree, the general processes gov-
erning psychological reactions to them are considered to be the
same.
The general characteristics of behavioral theories outlined above
vary, depending on the specific behavioral theory. Great diversity
actually exists among behavioral theories. Strong evidence of this is
seen in the diversity of thought concerning how behavior is learned.
As mentioned, behavioral theorists consider learning to be the cen-
tral explanatory principle for all psychological phenomena, yet each
of three separate behavioral schools claim primacy for three different
types of learning, each with a distinct procedure and process under-
lying it. The basic types of learning procedures distinguished are
classical conditioning, operant conditioning, and observational learn-
ing. Each of these procedures uses systematic presentation of envi-
ronmental stimuli to alter the individual's future responses. Despite
this similarity, behavioral theorists point to the basic differences in
procedures and processes involved in each type of conditioning as
evidence for separate kinds of learning.
The behavioral theories all share in the significant advantages of
being rooted in the experimental learning laboratory. By necessity,
they are operationally clear in terminology, quite parsimonious be-
cause of their closeness to experimental data, and fairly consistent.
188 Coping with Physical Disability
Deductions from the theories have a good degree of testability. In
addition, two of the three behavioral "schools" — Pavlovian theories
and observational learning theories — acknowledge the role of inter-
nal psychological processes in human learning. These internal pro-
cesses, moreover, are not vaguely defined as in most mentalistic
theories of disability. Instead, these behavioral schools make use of
information-processing language, such as encoding, retrieval, and
storage, to describe the cognitive aspects of learning.
Empirical evidence demonstrating the utility of many behavioral
treatments for disabled persons is already at hand (Fordyce, 1974,
1976; Ince, 1976; Katz & Zlutnic, 1975; Wooley, Blackwell, & Win-
get, 1978). The types of physical disability to which behavioral tech-
niques have been applied run the gamut — asthma, chronic pain,
quadriplegia, blindness, arthritis, brain damage, hypertension, deaf-
ness. The goals of these treatments have also varied tremendously,
from modifying specific physiological functions such as muscle ten-
sion to improving the quality of complex behaviors such as assertive-
ness, medication usage, and self-control. These interventions also
have a number of methodological advantages over the nonbehavioral
approaches. Techniques are clearly defined in operational terms,
goals are likewise explicit, and measures of therapeutic success are
continuous throughout treatment to ensure that modifications are
made as needed.
The weaknesses of behavioral approaches lie in their lack of
emphasis on the internal psychological processes that influence each
person's perception and organization of his own personal world
(Neisser, 1967). A less than complete understanding of these factors
can lead to an alienation of rehabilitation professionals from the dis-
abled in a classic "insider-outsider" split (Dembo, Leviton, &
Wright, 1956). Ultimately, this split can block any constructive behav-
ioral or cognitive change. An integrative approach is needed in
which both internal and external variables can be properly placed in
a more comprehensive understanding of disability and rehabilitation.
Providing the most recent and comprehensive of all behavioral
theories is Bandura's social learning theory (1969, 1977). As its name
implies, this theory shares the behavioral emphasis on learning as its
central explanatory concept. Yet this social learning theory is unique
in its emphasis on mediation in human learning. All behavioral
change is viewed as involving cognitive mediation, that is, symbolic
and information-processing abilities. Furthermore, Bandura asserts
that almost all complex human behavior is a result of observational
learning or modeling. In this process, information about new ways of
acting, thinking, and feeling is obtained (learned) via observation of
Psychological Theories of Physical Disability: New Perspectives 189
others or from symbolic information describing new responses. Thus
no overt behavior actually has to occur in this type of learning. Learn-
ing by means of direct behavioral experience, as in classical and oper-
ant conditioning, is considered too slow and inefficient to be able to
account for complex human learning. Of course, Bandura recognizes
that both these learning procedures can have significant effects, but
he argues that any learning which occurs in them is due to the same
congitive processes that acocunt for observational learning.
In Bandura's social learning theory neither environmental nor
internal cognitive variables are singled out as the primary determi-
nant of behavior. A reciprocal interaction between external and inter-
nal influences is instead hypothesized. The individual's characteris-
tics— cognitive and self-reactive abilities, physiology, and present
behavioral repertoire — are seen as continually influencing and being
influenced by both antecedent and consequent environmental
events. Thus behavioral, cognitive, and environmental influences are
all considered to be equal sources of influence.
Bandura's social learning theory shares all the advantages of the
behavioral approach — clearly defined terms, logically consistent
principles, and strong deductive capacity. Experimental research
concerning both theoretical concepts and suggested therapies is rela-
tively easy to accomplish. Social learning theory is not, however, as
simple as other behavioral theories. Many cognitive variables, such
as attention, encoding, and imaging abilities, are included as impor-
tant and necessary explanations to account for complex human psy-
chology. This increased complexity is not a liability, however; it
allows Bandura's theory increased predictive power and utility.
Empirically, social learning theory has received strong support.
It is based on a broad base of experimental findings regarding both
human and animal behavior. A very large range of complex human
behavior has been shown to be consistent with and amenable to
observational influences (Bandura, 1977). Such diverse areas as mor-
al reasoning, self-control, language development, vicarious reinforce-
ment, and control of physiological functions can all be powerfully
addressed from this perspective.
Conclusion
A thorough integration of both explanatory and treatment perspectives
is required before the wide chasm between the clinician and theoreti-
cian can be bridged. Some movement toward such an integrated the-
ory can be seen in the inclusion of both cognitive and behavioral
190 Coping with Physical Disability
variables in the theories of Wright and Meyerson and in the recogni-
tion (Parsons, 1964; Skinner 1953; Wright, 1960) of the role that the
environment plays in psychological adjustment to disability. Most im-
portant, however, has been the development of theories which incor-
porate these assets within a system that deals equally with explana-
tion and treatment. Bandura's (1977) social learning theory is one such
integrative attempt. Although a thorough extension of social learning
theory to the field of physical disability and rehabilitation remains
unwritten at this time, such an application offers great promise for the
future. This theory can accommodate the need for an overall explana-
tion of human stability and development, while simultaneously pro-
viding therapeutic methods by which to deal with the practical, every-
day problems in the rehabilitation setting.
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14 Behavioral
Rehabilitation
The Promise of Things
to Come
Henry Slucki
Too often, the advent of technology engenders a paradox: progress —
with its promise of an improved quality of life — is accompanied by
retrogression with its undesirable side effects, such as pollution, dis-
ease, disability, and even death. Thus the implementation of new
discoveries may occasion negative consequences, unforeseen but
nonetheless injurious to the unsuspecting consumer. So a disability,
such as paralysis, may be the unfortunate product of advanced hu-
man engineering on our environment, with the sources of injury to
be found within an industrial, home, or recreational setting (includ-
ing a vehicular accident). The effects may include behavioral disa-
bilities— especially in the activities of daily living, self-care, mobil-
ity, and communication — loss of employment, and psychological
disabilities, especially depression. To reverse these effects the field
of rehabilitation medicine (with its allied health professions) is de-
voted to maximizing the handicapped person's return to the behav-
iorally functional ("normal") repertoire that was present prior to the
disability, or, if congenital or permanent, to some optimal or compen-
satory capacity. For those circumstances in which total loss of func-
tion has resulted from limb amputation or complete neuroanatomical
lesion, the goal of therapy is to restore or reinstate the behavioral
equivalent through artificial means such as prosthetic devices or sub-
stitute manipulations from other parts of the body to compensate for
the nonexistent or diminished function.
It is the central argument of this chapter that it is the rehabilita-
tion professionals who reap the credit for returning the injured and
disabled persons to the ranks of the self-sufficient, functioning, and
gainfully employed members of the society, therefore, it is they who
193
194 ' Coping with Pliysical Disability
must also be assigned a major share of the responsibility for misdirect-
ing the disabled into a second-class status, one that is inferior or in
some manner inadequate. It will be shown that rehabilitation profes-
sionals can contribute significantly to the disabled person's contin-
uing inability to progress beyond some limited level, largely through
mismanagement of the therapeutic process, primarily because these
professionals lack behavioral knowledge and skills to apply them ap-
propriately. Additionally, behavioral research in rehabilitation medi-
cine has been woefully lacking or of questionable value for helping
the therapists with improved methods of intervention.
In the final analysis the field of rehabilitation has been domi-
nated by medicine, with its biases and shortcomings, especially in its
dependence on the medical model as an explanatory framework for
behavior. Aside from its obvious deficiencies on theoretical grounds,
it also fails empirically as a system (Ullmann & Krasner, 1965).
Because patient management is a behavioral problem within a
medical/rehabilitation context, it is from the behavior analyst, in co-
operation with the physician that the impetus for its solution must
come, and be elaborated and encouraged by the rehabilitation ther-
apist in collaboration with the disabled person. Only when these
four elements contribute their respective shares will the rehabilita-
tion process succeed.
Rehabilitation Medicine
Within a rehabilitation setting conventional methods of intervention
have evolved that are rich in clinical wisdom and practical experi-
ence. However, they may suffer from serious shortcomings they
share with other areas of clinical medicine, namely, the lack of ex-
perimental rigor for both validity and reliability. Thus too often it is
impossible to distinguish between fact and fiction, observation and
inference, good practice and good luck, knowledge and supersti-
tion— in short, technological evidence and ephemeral allusion all
seem to have an equal status of acceptability.
It became apparent to me after visiting the exercise gyms in
physical and occupational therapy services that gross errors in behav-
ioral management are being committed every day because of igno-
rance of the scientific principles of behavior analysis.
Therapists' attention as a potent social reinforcer is often made
contingent on maladaptive behaviors exhibited by patients, such as
complaining of pain, inactivity or lack of exercising, or other similar
Behavioral Rehabilitation: The Promise of Things to Come 195
supplicative behaviors; or such social reinforcement may be de-
hvered noncontingently, that is, in a more-or-less random fashion
rather than contingent on appropriate behaviors (such as exercising
correctly). It is noteworthy that too often it is the perennial "squeaky
wheel that gets the oil," namely, the quarrelsome and uncooperative
patients, the ones who complain and do not exercise, who get the
therapists to respond to them; whereas the ones who are carrying
out the prescribed exercises by being busy constantly and involved
in their therapy will rarely get more than a "Keep it up!" or "That's
good work!" comment. The instructions by the therapists to the pa-
tients often specify the mismanaged contingency in this fashion:
"When you have completed the prescribed exercise, just sit and rest.
I'll come to check you when I see you are not working" (emphasis
added). Thus, from a behavioral point of view, the cessation of
exercising — whether from completion of the regimen or because the
patient hasn't even begun to exercise — is reinforced by the thera-
pists' attention. When a therapist returns and says to the patient, "I
see you are resting. Did you finish the exercises?" the reply is usu-
ally "Yes," which the therapist reinforces by saying "That's good!
I'm glad you did," or some such statement. Not only is the appropri-
ate behavior (exercising) not reinforced while an incompatible be-
havior is, but the "credibility gap" widens, with the patient becom-
ing convinced that the therapy is of no value, and, if on out-patient
service, this person is neither likely to do the exercises at home nor
to continue to come in for therapy.
In addition, there are numerous factors operating against a pa-
tient's adherence or compliance to the exercise regimen. When, for
example, an injured limb is moved, there is usually pain, a conse-
quence that reduces the likelihood of doing the exercises. Also, for
most but the highly motivated patients, there is a good deal of bore-
dom in the repetitive patterns which characterize physical and occu-
pational therapy rehabilitation programs. Assuming that the patient
has been convinced that there is validity to the exercise program,
namely, that lifting a weight, for example, will affect the recovery of
the use of that limb for everyday tasks, the patient may still become
discouraged rapidly in the absence of meaningful recovery of func-
tion which, unfortunately, usually takes a relatively long time.
From the patient's point of view, the immediate effects of exercis-
ing are: (1) pain, (2) boredom, and (3) no improvement in the recovery
of function — at least none that the patient can yet observe. The imme-
diate feedback to the patient from the therapist may be (l)aversive,
ranging from nagging and admonition to reprimand and reproach or
196 Coping with Physical Disability
(2) mismanaged, that is, either contingent on maladaptive behaviors or
noncontingent on appropriate behavior emitted by the patient or (3)
systematic, that is, differential and contingent according to the princi-
ples of behavior analysis (to be discussed below).
On the other hand, the therapists' behaviors are also controlled
by their respective consequences, often originating from the pa-
tients' behaviors themselves. Thus a nonproductive and poorly moti-
vated patient, one who does not show a high output, may produce for
the therapist a diminution in the therapist's support for that patient
(which, in turn, may contribute further to depress the patient's behav-
ior even more). The resulting lack of success in the patient's progress
will tend to influence the therapist into shifting away from that pa-
tient and putting more effort into working with a more "productive"
patient.
This descending spiral — in all probability — will eventually re-
sult in termination of therapy either from the patient's "dropping
out" or the rehabilitation team's concluding that the therapy program
is no longer effective in producing results, since the patient has
apparently reached a plateau. By contrast, a productive and energetic
patient who continues to be motivated and to show progress in ther-
apy will tend to receive more support from the rehabilitation team.
In addition to the above analysis of factors contributing to a
pessimistic and grim portrayal of rehabilitation, there is the profound
and sometimes overriding influence of the disability payment. "The
behavioral psychologist looks at the grant of disability benefits as a
potential secondary gain which, in chronic cases, 'teaches' the indi-
vidual to be sick in order to obtain financial rewards." (Grossman,
1979, p. 41). Although this inference establishes purpose in the re-
cipient, a conclusion that goes beyond the data, it is a fact that when
viewed in this manner, "the grant is a reinforcer of idleness" and
"the law thus provides for built-in resistance to any return to gainful
activity" (Grossman, 1979, p. 47). "Similarly, the rehabilitation coun-
selor is frustrated by the fact that many beneficiaries believe their
disability checks to be permanent income which they have earned,
which belief causes them to view rehabilitation as a threat to finan-
cial security rather than a preparation for return to productive activ-
ity" (Grossman, 1979, p. 41).
Consider the following excerpt from the Ways and Means Com-
mittee of the U.S. House of Representatives (96th Congress, First
Session), during a hearing before its Subcommittee on Social Secu-
rity. The testimony is that of Mr. John H. Miller, consulting actuary
to the Committee (1976):
Behavioral Rehabilitation: The Promise of Things to Come 197
Under present law, disability benefits are awarded only if (i) the disa-
bility is judged to be permanent or (ii) is not permanent but is expected
to last for a long time and at least twelve months in any case. In effect (i)
is a life sentence to dependency and uselessness and (ii) is an indeter-
minate sentence with a possibility of "parole" via recovery or rehabili-
tation but no definite timetable or program for re-evaluation although
certain cases are diaried for future medical re-evaluation. Both benefi-
ciaries and administrators are therefore left with the inference that a
disability pension has been granted. The very sorry showing of rehabili-
tation efforts and the low and declining rate of recoveries seem to sup-
port this conclusion. The psychological impact on the disabled individ-
ual of the judgment that his disability is permanent or of long and
indefinite duration certainly does not set the stage for early recovery or
for a serious attempt at rehabilitation, (p. 124)
With all these combined factors added to the medical fact that
recovery often will occur simply because of the passage of time, it is
a miracle that patients continue to participate in physical and occu-
pational therapy rehabilitation programs!
Physical and occupational therapists are behavioral engineers in
the full meaning of this term. Many consider their task to be more
than that of "merely" repairing and reshaping the use of limbs and
neuromuscular units that have been damaged. These professionals
express concern for the "whole" person and not merely a damaged
limb. Viewing their roles in these broad terms, these well-meaning
and well-trained therapists engage in activities that may be, in fact,
antitherapeutic. Michael (1970) details some of these practices and
their behavioral effects on the patients. In reviewing the therapeutic
aims of rehabilitation, one is always faced with the question of
whether the patient improved because of, regardless of, or in spite of
the staffs intervention. Mismanagement in many medical areas, such
as an error in clinical practice or judgment, may result in death or
very obvious worsening in the patient's condition. By and large,
physical medicine and rehabilitation do not fall into this category:
this realm of practice results in nonlethal effects, for rarely, if ever,
does one of its patients die because of an error, a miscalculation, or
incorrect procedure. More often, the effect is that of delaying or
hampering the rehabilitation process. As is true in other applied
areas of medicine and therapy, lack of progress can be blamed on the
physical limitations of the patient, the state of the art, or limited
knowledge accumulated by that area or discipline, or, in the last
analysis, on the patient who lacks motivation. The erring rehabilita-
tion professional escapes blame free!
198 Coping with Physical Disability
In general-medicine wards a nurse administers therapy in the
form of medication or specific procedures very carefully and super-
vises the patient at all times (even if the monitoring is carried out
from a distance). Too often, the physical medicine therapist, by con-
trast, supervises the patient minimally, giving the patient some gen-
eral statements about the purpose of the particular intervention (e.g.,
to strengthen a given muscle group), followed by a more-or-less spe-
cific instruction (e.g., "Do this exercise 10 times or until you get too
tired, and then take a rest.") Because most exercises are routine, the
therapist moves on to a second patient and returns to the first one at
a later time. The patient is blamed for any lack of motivation because
he or she understands the disability as well as the rehabilitation
process, "wants" to get well, should, therefore, perform as in-
structed, and because the therapist, who is not a babysitter, should
not be given the task of overseeing patients as they carry out routine
exercises. Hence, one major behavioral management problem too
often avoided or overlooked by therapists is whether the patient is,
in fact, doing the exercises and whether these are being carried out
correctly as prescribed. A second question is whether the prescribed
program of rehabilitation has been designed to produce the behav-
ioral end product most effectively. A third question deals with the
changes that may be needed in the therapeutic program as the pa-
tient improves, namely, what new interventions are indicated and
what are the criteria for determining when and how these should be
implemented.
By contrast, until recently the role of a psychologist within a
physical-medicine ward setting has been limited to counseling the
patient and anyone immediately concerned with his or her rehabili-
tation (family members, ward personnel, etc.) and thus oriented to-
ward assisting the patient "adjust realistically to and better under-
stand" the particular disability. Rarely, if ever, was a psychologist
called in to aid in the development of strategies for more usual thera-
peutic interventions — this task was seen to be exclusively within the
purview of the physical and occupational therapists.
In the rapidly growing discipline of the experimental analysis of
behavior as it pertains to medicine — behavioral medicine — and by
analogy, to rehabilitation — behavioral rehabilitation — the elimination
of certain behaviors and the maintenance of others, the establish-
ment of specific stimulus control conditions that affect these
changes, and the alteration of response emission rates by means of
schedules of reinforcement are all topics within the realm and exper-
tise of applied behavior analysis or behavioral engineering.
Behavioral Rehabilitation: The Promise of Things to Come 199
Experimental Analysis of Behavior
The experimental analysis of behavior has a long history, with its
philosophical origins reaching back to the earliest roots of scientific
thought, through the Greeks, the French Encyclopedists, the British
Empiricists and Associationists, Darwin, John B. Watson (the
American behaviorist), Pavlov (the Russian physiologist), culminat-
ing in B. F. Skinner. Its significance is its ability to systematize
behavioral knowledge, that is, to generate and collect data through
experimentation resulting in the formulation of behavior principles,
which, in turn, can be applied systematically to produce reliable
effects. It is not within the scope of this chapter to discuss behavior-
istic philosophy or to justify the existence of a science of human
behavior. Others, especially Skinner, have done so articulately and
extensively.
What are the principles of the experimental analysis of behavior
and how may they be applied to rehabilitation? What lessons may we
learn from such an analysis? For a more thorough and much broader
discussion of applied behavior analysis in medicine — behavioral
medicine — the reader is referred to Davidson and Davidson (1980),
Ferguson and Taylor (1980), Ince (1980), Katz and Zlutnick (1975),
and Pomerleau and Brady (1979). Also of special importance are the
following articles: Fordyce (1971), Meyerson, Kerr, and Michael
(1967), Meyerson, Michael, Mowrer, Osgood, and Staats (1960), Mi-
chael (1970), and Pomerleau (1979).
Principles of Operant Behavior
The following account, intended only to highlight some principles,
gives samples of our research into their applications to the rehabilita-
tion of patients who, having suffered from brain injuries, manifest
sensory losses, communication handicaps, brain dysfunctions, behav-
ior management problems, and impairment of behavioral self-control
repertoires. Our research data demonstrate both accelerated recovery
and the extent to which the functions have been regained by the
patients who served voluntarily as subjects in our experiments.
These persons, for whom all other efforts including excellent but
conventional rehabilitation had failed, had had their injury at least a
year or two earlier. In fact, as a prerequisite for eligibility to partici-
pate in our studies, these individuals documented the extent of neu-
rological damage by medical charts (including its source — head
trauma, stroke, or other — immediate and chronic effects, dates, and
200 Coping with Phiysical Disability
full particulars) and evidence of rehabilitation efforts elsewhere,
their results, and eventual discharge because of lack of progress.
A most basic observation that has been formalized into what is
often called the empirical law of effect is that of positive reinforce-
ment, namely, the operation of presenting a positive consequence
(reinforcer) contingent on the emission of a given behavior, effecting
an increase in its probability of occurrence on a future occasion.
Thus the delivery of praise by a therapist or obtaining the knowledge
that the extension of an arm is improving (positive reinforcers) will
produce an increase in the range of motion, the rate of movement, or
some other measurable change. This phenomenon is elementary, en-
dorsed by professionals, and well-documented in the laboratory and
the clinic. Its universality is recognized in all avenues of human
behavior. But there are several important guidelines to be followed
if a positive reinforcement procedure is to be effective. First, the
positive reinforcer to be used must in fact be a positive reinforcer.
That is, it is essential to demonstrate empirically that for this person,
in this setting, under these conditions, at this time, this stimulus is
positively reinforcing. Food, for example, may be a positive rein-
forcer for a hungry person but probably not for one who has just
eaten. Additionally, attention from one therapist may in fact be very
reinforcing, while from another it may not. Second, the delivery of
positive reinforcement must be immediate; if delayed, it may be
delivered simultaneously with the occurrence of a segment of behav-
ior that may, in fact, be undesirable or incompatible with the desired
one. Thus if a patient is lifting a weight [the desirable behavior] and
as he or she puts it down with a complaint that "I can't do it" [the
undesirable behavior], the praise by the therapist is delivered, that
moment's delay will likely result in the inadvertent reinforcement of
the undesirable behavior. Another guideline for the use of positive
reinforcement is to maintain a consistency in the criterion for rein-
forcement if the response rate is to be sustained.
A closely related phenomenon, extinction, is simply the manner
in which a learned bit of behavior may be eliminated: the operation
of withholding a positive reinforcer previously contingent on the
behavior, with the observed decrease in the rate of its occurrence on
future occasions. A common mode for incorporating an extinction
procedure within a ward setting is simply to ignore the behavior to
be extinguished, that is, pretend that it didn't occur. It is relatively
easy to do if one simply does something else at that time. In other
words, go about your business as if you were blind or deaf vis-a-vis
the patient's undesirable behavior: pick up a telephone and make a
call, open a book, turn to talk to another person, leave the room — in
Behavioral Rehabilitation: The Promise of Things to Come 201
short do anything but pay attention to the person who emitted the
behavior to be extinguished. The effects of such a procedure will be
the disappearance of the behavior on which it is contingent.
There are some important facts that must be recognized by any-
one using extinction as an intervention mode in therapy. First, be-
cause most reinforced behaviors take longer to extinguish than to
condition, a therapist using this behavior modification method
should be aware that if extinction is to be effective there must be a
total withholding of actual and potential reinforcers for that behav-
ior. If there is the slightest reoccurrence of reinforcement, the behav-
ior will return. This inadvertent reintroduction of reinforcement by
the therapist has several and far more severe fallout effects, namely
the introduction of intermittency in the pattern or schedule of rein-
forcement. This phenomenon, studied extensively by Skinner and
his students, is a very technical and complex aspect of behavior
analysis, far beyond the scope of this chapter. However, it is of
unique importance that behavior emission may be maintained more
efficiently through intermittent reinforcement, that is, for extensive
periods of time with fewer reinforcers during acquisition and with
greater persistence during extinction. Knowledge of the intricacies of
schedules enables behavior managers to regulate the performance of
those in their care far better. What began as a fortuitous discovery
(Skinner, 1956) has developed into a most significant technology for
behavioral control. For the interested reader, Ferster and Skinner
(1957), Morse (1966), and the Journal of the Experimental Analysis
of Behavior are strongly recommended.
Second, because it is always a particular behavior that is being
extinguished, the applied behavior analyst must remember to rein-
force positively those behaviors that are appropriate and desirable.
Thus although therapist attention may be withheld from a given pa-
tient to eliminate or extinguish a specific behavior, the therapist
must be attentive, watching for the occurrence of an appropriate
behavior which may then be reinforced positively. This form of in-
tervention will ensure good motivation and a positive attitude on the
part of the patient, both of which, it is well-recognized, are critical
for success in the therapeutic process.
From time to time we are asked to consult with the staff of our
bum ward and assist them in managing the oppositional behavior of
some children, ranging from crying and screaming excessively and
refusing to follow directions to picking off skin grafts prematurely —
in short, behaviors often arising from pain which interfere with proper
medical treatment and delay the recovery process significantly. The
first step in applying behavior analysis is to observe the behavior in
202 Coping with Physical Disability
question and its environment, that is, the conditions under which it
occurs — which events in the immediate vicinity were setting the
occasion for the child to "misbehave" and which ones were reinforc-
ing this pattern of oppositional behaviors. As is often the case, this
behavior occurs during a session with the physical therapist, during
which time the affected limbs, the legs, for example, are moved
passively to prevent joint contractures and to facilitate normal
muscle functioning; they are wrapped with Ace bandages to provide
support for the lower leg capillary circulation; and the child is re-
quired to walk with the assistance of a walker-aide. Our baseline
observations suggested that the oppositional behavior occurred in
the presence of the physical therapist and was being reinforced in-
termittently by this person's attention and verbal statements — both
positive and negative, such as encouraging, cajoling, and finally
threatening the patient to cooperate. The intervention program we
recommended, after these initial baseline determinations were com-
pleted, was designed to extinguish the crying behavior, that is, to
allow the child to cry and be oppositional but receive no reinforce-
ment for it. Thus the therapist continued to work with the child (e.g.,
moving his legs — since stopping the treatment is often the result that
is most reinforcing to the child!) but withheld all attention including
eye contact, until he ceased to be oppositional, whereupon she
praised him for not crying, for being cooperative, and so forth.
Whereas before he was getting a great deal of attention for his ty-
rannical behavior, now he was getting it only when that behavior was
absent. The results of this procedure were evident almost immedi-
ately and by the second day, his oppositional behavior had virtually
disappeared completely — a pattern which had been in his repertoire
for several months!
What is being suggested by the above-cited illustration is that
the simultaneous application of positive reinforcement for one behav-
ior and extinction for another is a more effective intervention than
either one separately. This process, called differential reinforce-
ment, is central to all behavior modification procedures — whether
educational or therapeutic. What is Skinner's greatest contribution to
the science of human behavior is his understanding of the power of
differential reinforcement, especially as it is applied to a process of
gradual behavior change. This process, called shaping, is the system-
atic application of differential reinforcement to successive approxi-
mations of the target behavior, the goal that is to be brought about.
As the final behavior is approached, the criterion for reinforcement is
raised gradually, with a twofold effect: a decrease in the undesirable
behavior (extinction) and an increase in the designated one (positive
Behavioral Rehabilitation: The Promise of Things to Come 203
reinforcement). Shaping is an essential process to establish behaviors
that are not in the current repertoire of a given person or to refine
those that are not adequately developed, as in skills, for example.
The level to which behavior is emitted at any given moment by the
individual may be expressed as a statistical mean, that is, average
performance: some behavior will be above and some below that
value. The process of shaping through differential reinforcement
eliminates the poor performance and enhances the desired one.
From the "subject's" point of view, to behave or not to behave,
that is the question! From the point of view of the experimenter/
therapist, however, when the behavior of a patient/client/subject is
emitted, to reinforce or not to reinforce, that is the question! The
answers to these questions, of course, depend on the point in the
shaping process at which that behavior is occuring. More specifi-
cally, in applying behavior analysis, the strategy must be based on a
three-element formulation: (1) What is the target behavior or desired
end product, that is, what will this person be doing as a result of the
intervention that he or she is not doing now? (2) What is the current
baseline of that behavior? (3) What will function as a positive rein-
forcer for this person? What follows is the formulation of a blueprint
or detailed, step-by-step prescription of what the behavioral engi-
neer is to do to bring about a change in that person's behavior.
VM
VM, a 55-year-old woman who had suffered a stroke resulting in a left hemi-
paresis, was hospitalized and underwent physical therapy for the ensuing
2V2 years. As a result, there was a partial recovery of her ability to walk with
the help of a quad cane and a short leg brace, but there was no evidence of
movement in her left forearm. Her goal was to improve her walking, if
possible. Because there was electromyographic (EMG) evidence of some
intact motor units in her left leg, it was decided to attempt modifying the
range of motion for knee extension and foot dorsiflexion, both maneuvers
having been impervious to physical therapy for months (just prior to our
intervention). The knee extension was programmed for shaping in the fol-
lowing manner. VM was seated in a chair while one of our technicians was
next to her, on the floor so as to view closely and record accurately the
distance between the rear tip of VM's heel and the floor (by means of a
meter placed vertically in a plane parallel to the arc prescribed by her heel).
Baseline data were recorded by instructing VM to raise her lower leg as high
as possible several times without giving her any feedback information about
her perforrnance. Next, another technician raised VM's leg (passively) to its
full extension several times to obtain a reliable target-behavior recording.
204 Coping with Physical Disability
The intervention consisted of asking VM to raise her lower leg as high as
possible, reading the height accurately and giving her the information imme-
diately. If a given trial produced an increase in the height, she was given
praise in addition; otherwise, nothing else was said and, after a brief time, as
designated in the research protocol, the next trial took place. In this manner
only the positive (improvement) was accentuated. Marked improvement was
achieved almost at once, and she continued to show progress; within a very
short time she was extending her leg to its full limit. The dorsiflexion exer-
cise was modified through EMG biofeedback which also proved to be very
effective in producing rapid and notable results. As a result of these two
interventions, after 9 weeks and a total of about 12 hours, she was able to
walk with only a simple (single-stem) cane and no leg brace. Some arm
pronation was also brought about with only the aid of EMG biofeedback
intervention.
Biofeedback is a special instance of behavior modification in
which the behavior being modified is observed on a physiological
level by means of a special voltage monitor. Thus rather than shap-
ing a change in the angle of ankle rotation or the height a leg has
been lifted, it is the bioelectrical voltage intensity that is increased
(or decreased) through differential reinforcement for covert (physio-
logical) behaviors. This procedure has obvious advantages when the
overt behavior, such as either the movement of a limb or muscle
contraction, is not of sufficient magnitude to be observed visually.
It is noteworthy that EMG biofeedback has been used effica-
ciously during rehabilitation for reconditioning the use of disabled
limbs. If there is any meaningful criticism of applying EMG biofeed-
back to rehabilitation, it is simply that if the behavior — however
small — may be readily observed, the need for recording the bioelec-
trical potential is greatly reduced. In the case of VM, that the knee
extension was an easily measured response made the use of EMG
biofeedback unwarranted and superfluous. The face validity of shap-
ing overt behavior is of much greater value than monitoring individ-
ual muscle changes electronically and then assembling these into
coordinated gross movements.
There is, however, a major advantage in utilizing EMG biofeed-
back procedures as adjuncts to shaping overt behaviors, especially
for modifying limb movement when spasticity may interfere with the
desired coordination. In such instances monitoring the antagonistic
muscle groups enables the therapist and the disabled to observe and
dissect the complex behavior patterns and through differential rein-
forcement simultaneously shape changes on both the overt and the
physiological levels.
Behavioral Rehabilitation: The Promise of Things to Conne 205
BB
BB, a 24-year-old, left-handed man "lost" the use of his left hand (including
elbow, wrist, and fingers) as a result of brain damage sustained from a head
injury he received when a car collided with his motorcycle. He was hospital-
ized, underwent therapy at a leading outpatient rehabilitation center, and,
after about a year-and-a-half, was discharged from the facility, because he
had shown no progress for some time. Because some very minimal move-
ments at the several joints of the upper limb were observable during base-
line determinations, shaping procedures were put into effect at once.
Knowledge of results showing small but measurable gains in the range of
motion of the left-hand index finger, for example, was an extremely effective
reinforcer. Thus, in retraining this response, great progress was achieved
rapidly: finger extension evolved into a flicking response (measured by the
distance the checker traveled on our vinyl corridor floors) and eventually
writing in a very legible manner (and to our mutual delight, finger snap-
ping!). The gains were recorded in minute millimeters, vertical travel from a
flat table-top surface; next, the rate of finger extension repetitions was in-
creased by shaping a reduction in the number of seconds (to the nearest
tenth) it took to do ten repetitions of the exercise.
It is noteworthy that the therapist who asked for the referral to our
laboratory suggested that perhaps we could do something about his "depres-
sion." After the first few minutes of our initial interview, it became obvious
to us that his "depression" was simply a realistic appraisal of his current
state of affairs and that the "depression" would be "lifted" when his "real"
problems were eliminated. This hypothesis was verified as he regained the
normal functions in his left hand.
A similar process of shaping was observed to operate effica-
ciously for DL, a 24-year-old woman who, because of cerebral palsy,
had never produced forearm pronation nor supination (baseline 0°-
5°) and who was shaped to exceed 150 and for MO, a 48-year-old
woman who had suffered an ideopathic facial nerve hemiparesis
(Bell's palsy) from unknown origin and whose right eyelid's closure
was shaped in less than one hour.
MW
MW, a 52-year-old woman, developed a form of spasmodic torticollis in
which her head was deviated to her left with a slight upward tilt obliquely to
the right. The effect was to restrict the range of motion and her posture when
sitting, standing, and walking. In addition, she reported pain at all times that
was especially intense when rotating her head to either side beyond a small
degree. To assess the behavior and determine her range of motion, we fitted
her with a football helmet and restricted all compensatory movements of her
206 Coping with Physical Disability
trunk and shoulders by strapping her into a chair by means of football
shoulder pads. (I wish to thank the Department of Physical Education at the
University of Southern California, Dr. Richard Perry, the athletic director,
and John Robinson, the coach of the football team, for their kindness and
cooperation in giving us access to this equipment.) A 25-centimeter pointer
was attached onto the face mask and an arc of plastic placed on the table in
front of her enabled the experimenter/therapist to read the exact degree of
angular rotation as the range of motion directly. Reinforcement consisted of
praise and verbal feedback of performance. The shaping procedure consisted
of differentially reinforcing greater travel to the right and the left and re-
sulted in an increment from a baseline range of motion of approximately 35°
(from extreme right to extreme left) to 170° and still improving at this time.
In addition to the simultaneous reinforcement and extinction of
behavior, the process of differential reinforcement may be made con-
tingent on the occurrence of behavior in the presence or absence of a
stimulus. Thus one stimulus signals that reinforcement is available,
contingent on a response, while another stimulus serves as an envi-
ronmental event to indicate that behavior emitted in its presence
will be extinguished; that is, reinforcement will not be delivered.
What is learned is that behavior may be emitted (and reinforced) in
the presence of one stimulus and extinguished during another. The
process of applying differential reinforcement to the stimulus is
called discrimination or stimulus control.
JL
JL, a 35-year-old woman who had suffered a stroke in the midbrain region,
was hospitalized and underwent conventional rehabilitation as an outpatient
for about iy2 years. Much motor activity had returned during this time, but
she continued to experience a pronounced sensory loss accompanied by
paresthesia only on the right side of her body. This tingling sensation ap-
peared to vary with the intensity of any sensory input. Neurological exami-
nation confirmed the absence of sensitivity to pain, temperature, touch, and
proprioception on the right side of the body only. She sought help from our
laboratory because she had burned herself badly on repeated occasions
while attempting to conduct activities of daily living (washing with hot
water, cooking, etc.), since she felt no pain in her affected right hand.
An intervention program was designated to capitalize on the intact but
modest modality for discerning stimulus changes, namely, paresthesia. The
results indicate that with a simple discrimination paradigm she learned —
using her right hand only — to recognize the difference between 37° C (body
temperature) and 50° C (hot enough but neither painful nor injurious) in less
than 60 discrimination training trials. She reported a qualitative difference in
the subjective tingling sensations when her hand was in hot or body tern-
Behavioral Rehabilitation: The Promise of Things to Come 207
perature water. In effect, the training enabled her to translate changes in the
tingling sensations' characteristics of frequency and intensity into a corre-
lated temperature discrimination, even though she did not regain the ther-
mal sensitivity, nor did she lose the paresthesia itself.
JL presented us with another one of the many problems that resulted
from her stroke, namely, the loss of balance whenever she raised her nonaf-
fected left arm above a certain height — in reaching for something on a shelf,
for example. This loss of equilibrium is a very common result of stroke and
other brain injuries. A behavioral analysis indicated that she did not bring to
bear the necessary righting responses in sufficient time to compensate for
balancing in a coordinated fashion. By the time she realized she needed to
activate the contralateral side (the one affected by the stroke) to maintain
herself in a stable posture, she was already falling, because her reaction time
was too slow. For this coordinated chain of behavior segments we used the
arm raising response in which she climbed the wall using her index and
middle fingers of her (nonaffected) left hand alternately. This climbing was
done on a large wall mirror with a centimeter scale in the center to measure
the height accurately. Baseline data were collected for just a few trials since
she started to fall each time (only to be caught and supported by two techni-
cians standing on either side to avert her getting hurt). An arc of 5° to each side
of the scale was marked on the mirror just above her eye level, and a head-
band held a 20-centimeter pointer vertically at the center of her forehead
(between her eyes). When she stood perfectly straight, she had the pointer
lined tip with the centimeter scale on the mirror. She was instructed to climb
the wall on the centimeter scale and continue climbing as long as she kept the
pointer within the prescribed arc; she was to stop as soon as the pointer
deviated beyond the arc and start climbing again a few centimeters below the
point at which she had veered. A technician stood behind her to confirm when
she was "on course" and "off course." The results showed clearly that she was
able to learn to balance well. She has never fallen since. The righting re-
sponses were not really in need of retraining; rather JL had to learn to discrimi-
nate proprioceptive control, that is, under what internal stimulus conditions
certain righting responses had to be called in, when, and of what magnitude.
A third problem area that JL presented for us to help solve concerned a
more serious ramification of the loss of proprioception: unless she continued
to look at her hand, she reported not being aware of its location in space nor
of its motion. For example, if at the supermarket she keeps both hands on
the handlebar of the shopping cart and continues to look at them, she will be
able to control her right hand almost as well as her left one. If she turns her
head and looks away, her right hand may remain on the cart's handlebar, or
it may wander off and knock over a display of canned goods or a stack of jars
nearby (within an arm's reach). In neither of these conditions is she aware of
the location of her hand!
It is a common observation of most rehabilitation therapists that
stroke patients and those individuals who have had a brain injury
208 ' Coping with Physical Disability
and who have learned to move their hands, fingers, and so on, cor-
rectly in spite of deficiencies in proprioception, have done so
through visual discrimination and feedback training. In most cases,
they continued to depend on visual feedback, even though it was
only utilized as a training method by occupational therapists. If these
former patients are asked to shut their eyes and go through the ap-
propriate movement, they may, in fact, make quite a few mistakes;
that is, for the vast majority since the proprioceptive discrimination
has not been re-established, removing the visual stimuli on which
these individuals are dependent may also result in no movement
whatsoever, one of the opposite movements (flexion instead of exten-
sion, for example), or some other movement that is quite bizarre.
We have established a program designed to assist brain-injured
individuals (JL, for example) to shift from complete visual depen-
dence to total visual independence and to rely more appropriately on
proprioception as the controlling agent for neuromuscular move-
ments. The systematic change of stimulus control is based on the
research paradigm oi errorless discrimination (Terrace, 1966) which
weans the individual systematically while maximizing success in
maintaining the correct behavior. As the stimulus dimension is faded
gradually, a more difficult discrimination is required once the easier
one has been successfully implemented. Progress is made very rap-
idly, and retraining is accomplished with little effort.
Methodologically, the problem is one of engineering the fading
process across some stimulus dimension. For our program, the vis-
ual dimension was faded using a video monitor in the following
manner. A video camera equipped with a large zoom lens is posi-
tioned directly over the patient's shoulder, thereby blocking direct
viewing access to the hand and showing the hand in the video
monitor in front of the patient. The transfer of viewing the hand
indirectly through the monitor instead of seeing it directly is
achieved with very little difficulty. The patient is given tasks to
perform and as he or she does so appropriately, the intensity on the
video monitor is faded very gradually over trials. This engineering
process is continued, until eventually the patient is performing the
hand (neuromuscular) coordination tasks in front of a totally dark-
ened screen without errors. This accomplishment is easily trans-
ferred to other laboratory tasks and to nonlaboratory settings as
well. Throughout the sessions, a video tape recorder is available for
continuous or time-sampled recordings for data storage and feed-
back to the patient. Also, even though the monitor is faded, the
video tape recorder and the monitor for the camera are not faded,
nor are they affected by the fading procedure whatsoever. This
Behavioral Rehabilitation: The Promise of Things to Come 209
technical fact is important, otherwise it would not be possible to
record and intervene at the same time.
For JL, learning proprioceptive discrimination errorlessly was a
relatively rapid intervention. Many others have also benefitted from
this straightforward, mechanical intervention and they are free to
activate a hand or finger movement and are no longer dependent on
looking at the hand to produce the appropriate behavior.
The foregoing is but a brief introduction into the behavioral prin-
ciples utilizing positive reinforcers, with examples from our labora-
tory of their applications to rehabilitation interventions. The reader is
referred to other sources cited above (especially the introductory
chapter from Katz and Zlutnick, 1975) for more extensive elaborations
of the principles — for both positive and negative reinforcers — espe-
cially as they pertain to more complex human behavior.
What is of greatest value in the application of these principles to
medicine is the effect it will have on the philosophy and practice of
medicine itself. Rarely is the doctor-patient relation seen as an active
partnership in which both have clearly delineated and egalitarian
roles. The patient is usually viewed as a passive recipient of the
disease entity and, likewise, of the curative powers of the physician.
There are many interventions including, but not limited to, surgery
when this is not only an accurate but proper perspective. Rather than
simply issuing an order, the doctor must alter the tactics to motivate
the patient to function either as a passive recipient of the health care
team's actions or as an active agent in the rehabilitation itself. In fact,
it is precisely in rehabilitation medicine, where the patient is re-
quired to collaborate actively with the health professional in the
therapeutic process itself, that behavior modification has been of the
greatest value.
Important Lessons to be Learned
By appropriate control of reinforcement contingencies, health practi-
tioners may profoundly reduce or completely eliminate behavioral
disabilities or undesirable sick-role behaviors, thus facilitating reha-
bilitation, eliminating suffering, or curtailing illness. From a behav-
ioral standpoint, therapists in rehabilitation medicine will be effec-
tive in bringing about behavioral improvement and recovery only if
the intervention corresponds to the behavioral principles known to
be controlling those functions.
Our research probes into behavioral rehabilitation have pro-
duced some very important lessons for those working in this area. By
210 \ Coping with Pliysical Disability
learning from our past errors we may improve our techniques,
thereby influencing the recovery of function and helping the dis-
abled to fulfill their potential more fully, while enabling us to meet
our professional obligations and our pledge to the patient/client — a
promise of things to come.
First, we must reassess the current attitudes and practices in
physical medicine and rehabilitation. By adhering to the medical mod-
el, health practitioners are being handicapped either because they are
set in the ways of the traditional, psychodynamic approach or because
they are ignorant of behavioral principles (or both). What is much
more desirable, of course, is the open and pragmatic expedient and
the willingness to examine new approaches.
Second, it is necessary for therapists to differentiate between
what a patient is or is not doing from what he or she can or cannot
do. The latter must be determined empirically and independently
of the former — otherwise, the therapeutic process is necessarily
aborted.
Consider the following situation: a 24-year-old male is a victim
of a vehicular accident resulting in a head injury which leaves his
preferred hand paralyzed. The occupational therapist assesses the
paralysis and, although pessimistic about the results, attempts to re-
train the hand. After some time, no improvement is effected, and the
patient is depressed: he has a paralyzed hand and he must be cared
for by others for his every need. The occupational therapist — after
consultation with the rehabilitation team members, including a neu-
rologist, a neurosurgeon, a physiatrist, a psychiatrist, a social worker,
a nurse, and several therapists (physical, occupational and recre-
ational, etc.) — decided to retrain the nonpreferred hand, that is, to
take on the functions previously carried out by the preferred hand, so
as to enable him to become more self-reliant. This decision, based on
a complex of issues, is significant because (1) it gives him the means
for a more independent functioning since training the nonpreferred
hand to take on new tasks (e.g., writing) is relatively easy but (2) it
brings a finality to the disabled, preferred hand, namely, there will
be no further attempts to retrain it for recovery of function. This
young man is asked to accept this reality and to adjust to a "partial"
disability, while the therapist works with his other hand. What is an
obviously ethical question is: at what point in time is this decision
reached and how overwhelming does the medical/neurological evi-
dence need to be for therapy to be terminated (for the preferred,
paralyzed hand)? This case is that described above (BB), and it is
obvious — at least in BB's situation — that the "wrong" decision was
made by the therapist and the rehabilitation team members. Of
Behavioral Rehabilitation: The Promise of Things to Come 211
course, they were functioning within their level of competence, skill
and knowledge, and felt justified in making that decision. But there
is more to consider: the empirical distinction between is not and
cannot. When an injury results in total amputation of an arm, for
example, there is, of course, no recourse to "retrain" that nonexistent
arm. Rather, the tactic is one of working toward accepting the loss
and establishing compensatory means of coping, such as an artificial
limb. However, as long as there is evidence of function at some level
of observation, there must be a steadfast commitment to rehabilitate,
that is, to restore or reinstate the normal function or an approxima-
tion to it. The same conclusion must hold true for neural damage,
whether in the brain or the spinal cord or peripherally.
It might be a good idea to re-examine, in the light of these
comments, the designing, manufacturing, and dispensing of the
many prosthetic devices, accessories, and compensatory "gadgets."
These aids, which must be considered of great value in making the
individual more self-sufficient, may have been prescribed primarily
not because of therapeutic indications, but rather because they make
life easier for family members (a consideration not to be eliminated
in a precipitate manner).
Third, rather than to blame the patients/clients or their neural
pathologies for the lack of improvement, therapists must recognize
that the burden is on them to find appropriate ways to bring about
the needed behavioral changes.
It is clear that the patient's sick-role behavior is directly attribut-
able to the reinforcement contingencies controlled in large part by
others (relatives, friends, and even health and helping professionals).
Too often, well-meaning persons hamper the progress of rehabilita-
tion by indiscriminately dispensing the universal medication: tender
loving care (TLC). Displaying sympathy, empathy, or concern for a
suffering or disabled human being is a very normal, understandable,
and humane reaction. However, when these social behaviors func-
tion as reinforcers for behavior patterns that are incompatible with
therapy, the patient/client will display poor or marginal motivation.
Michael (1970) asserts that "from a behavioral point of view, . . . such
marginal motivation seems merely to be a case of insufficient or
poorly arranged reinforcement. The basic question that should be
asked is what does the patient get out of this activity? The problem
of motivation is essentially a simple one. One must merely arrange
the environment so that its desirable features are only available con-
tingent upon participation and accomplishment in the rehabilitation
training activity. It is in this area that the behavior modifier is mak-
ing and will probably continue to make the greatest impact on the
212 \ Coping with Physical Disability
field of rehabilitation" (p. 65). Thus, from this orientation, "the prob-
lems of the disabled person require the acquisition of some new
behaviors, the maintenance of adequate behaviors, and the extinc-
tion of inadequate or deficient behaviors." (Meyerson et al., 1960, p.
70)
Fourth, the fields of physical and occupational therapy are re-
plete with instrumentation designed to assess behaviors — both defi-
cits and strengths — accurately. Because baseline determination is the
first step in a behavior modification intervention, we were able to
incorporate the existing equipment with only a few changes center-
ing on increased precision. The important lesson we learned is that
all measuring instruments may function as training devices through
contingency management.
The history of scientific research and clinical practice has shown
that progress is greatly dependent on the development of the appro-
priate apparatus for both experimental manipulations and data re-
cording. Furthermore, with greater precision in behavioral monitor-
ing, greater skill in behavior modification is possible. Thus, the
quicker a small change — increase or decrease — in the behavior is
noticed and the shorter the delay between that behavioral change
and the delivery of reinforcement, the more effective will be the
therapeutic or experimental intervention.
A few examples from our laboratory which have been applied to
the clinic will suffice.
Stationary Exercise Bicycle or Ergometer. Widely used in
physical therapy, this apparatus is admirably equipped with an ad-
justable resistance, a speedometer, and an odometer or mileage indi-
cator. To generate one-tenth of a mile requires 35 to 45 revolutions of
the pedal, more work output than a patient recovering from a leg
injury or disability may be able to produce. A patient who is in the
early stages of rehabilitation will not achieve any reinforcement on
the odometer, even though he or she may have managed, with great
effort, to produce two or three or even 20 revolutions on the pedal.
To ameliorate this situation, we attach a permanent magnet to the
spokes of the wheel and place a reed switch on the bicycle frame,
thereby allowing us to record each revolution of the wheel. (If it is
desirable, more than one magnet may be placed on the wheel or
more than one reed switch may be attached to the frame of the
bicycle to record partial revolutions of the wheel).
Quadriceps (Knee) Board. This apparatus is for progressive re-
sistance exercises in which the patient may have minimal, intermit-
Behavioral Rehabilitation: The Promise of Things to Come 213
tent, or no supervision at all. The exercise may call for repeated rais-
ing or straightening out of the lower leg and holding that position for a
short time. With pain, fatigue, or boredom, the patient who is unsuper-
vised may either cease the exercise or perform it incorrectly, for ex-
ample, by lifting his or her leg and putting it down immediately with-
out the brief or extended pause, or by not lifting it high enough —
especially when a weighted cuff is attached to the ankle. To monitor
patients on this apparatus, we designed an adjustable, limiting (elec-
trical) switch attached to an adjustable ring-stand, thus maximizing
flexibility. Analysis of an event record may assist in the diagnosis/
prognosis of the case and also aid in prescribing the exercise program.
Pulleys. These may be used frequently in physical and occupa-
tional therapy with little or no supervision. We designed an arrange-
ment of microswitches whose actuators are contacted by attachments
on the ropes or the weights themselves. The exact location, electrical
and mechanical characteristics will vary from institution to institu-
tion and require only a little ingenuity to instrument properly.
Parallel Bars and Rubber Runner. These are probably the most
common walking-assistance apparatus in a physical therapy exercise
gym. The distance, velocity, and pattern of walking can all be moni-
tored by a pressure-activated switch (in or under the runner) or a more
expensive and versatile system with photoelectric cells, either of
which is activated immediately by the physical presence of the leg.
Feedback may be supplied via a display of several lights, each acti-
vated by a different switch, with the sequence reflecting the progress.
Walker-aid. An apparatus modification we are currently devel-
oping is designed to assist the evolution of reestablishing unassisted
walking behavior which begins with the walker-aid and proceeds —
as does physical therapy — through a quad cane and single stem cane.
The process utilizes an errorless discrimination training paradigm
described above and the dependent variable — the one whose change
is being monitored — is the decrease in pressure placed on the appli-
ance measured electromechanically — the less pressure being an indi-
cation of the patient's readiness to shift to the next appliance and,
therefore, greater independence.
In conclusion, automation of the exercise equipment is signifi-
cant because it (a) aids both the patient and the therapist by defining
precisely the behavioral criterion, by recording the behavioral occur-
rence and by measuring and assessing its parameters objectively, (b)
monitors and controls the behavior of the unsupervised patient —
214 ' Coping with Physical Disability
especially at home with microcomputers or via telephone lines to a
central facility, and (c) programs rehabilitation or instruction for
change by reinforcing the patient's exercise behaviors in what would
otherwise be a nonreinforcing or perhaps aversive situation.
Fifth, what must be the most important lesson we have learned
from our extensive research in behavioral rehabilitation is that behav-
ioral intervention may transcend neural tissue damage and, in spite
of it, retrieve lost functions to some degree greater than with conven-
tional procedures. For some strange reason, psychologists have been
more reticent than rehabilitation therapists to intervene behaviorally
when they learn that there is a neuroanatomical lesion or damage
responsible for the "behavioral deficit." This attitude of pessimism is
reflected even in the school personnel who will abandon hope when
a child is classified minimally brain damaged. Perhaps it is because
of the importance placed on the central nervous system that, given
real evidence of neural damage, psychologists consider remediation
or rehabilitation — that is, returning or restoring the disability to its
previous level of functioning (or to some approximation of it) — as
totally insuperable. (That a behavioral intervention may override
physiology is also implicated in biofeedback and respondent [Pav-
lovian] conditioning — both phenomena that startled the medical pro-
fession. The time is long overdue for the medical community to have
recognized this principle.)
Sixth, as a unifying principle, therapy must adhere to behavioral
laws if it is to be efficacious. This statement holds equally true for
the general practice of medicine and for rehabilitation as a specialty.
As such, it becomes essential for physicians and rehabilitation ther-
apists to have more than just a passing acquaintance with the princi-
ples of behavior. It is the least they can do for their patients.
Epilogue
It is of more than a passing interest that the area of rehabilitation for
neurological or brain-injured persons has been increasingly attract-
ing public attention. This trend, of course, is related to the fact that
in our technological society, with an increase in industrial, home,
vehicular, and recreational accidents, strokes, and other degenerative
diseases of the central nervous system, more people have come to
the realization that, although they are in good health at this moment,
they may become victims of brain damage without warning. Addi-
tionally, the population of disabled persons continues to grow larger
and they, along with other handicapped individuals, are raising their
Behavioral Rehabilitation: The Promise of Things to Come 215
levels of consciousness and are becoming more aware of their long
history of privations, asserting their rights to medical care, custodial
care, and rehabilitation.
The disabled have fewer rights because they are handicapped,
that is, they have lost certain motoric behaviors. If they should re-
verse their disability and magically regain their motor function, their
rights would be restored automatically. This "Catch-22" predicament
exists because — obviously — since their lost functions cannot be rees-
tablished, neither can their rights be regained. The advocate rights'
groups argue convincingly that although functions have been lost
permanently, the disabled persons' rights must be asserted and safe-
guarded on humanitarian, political, and rational principles. As a
complement, the behavioristic position presented here simply adds
that some functions may be regained. It is worth considering.
One final word of advice to anyone considering the application of
the principles of the experimental analysis of behavior to rehabilita-
tion: although it is very rewarding to therapists, teachers, parents, and
others who apply them systematically because they are so effective —
to achieve that level of competence requires a great deal of patience!
One needs patience to learn the many subtleties of a deceivingly
simple methodology, patience to become a keen observer of behavior
and notice minute changes along some identified dimension, pa-
tience to effect a behavioral analysis, ferreting out the variables and
their functional relations, and patience to apply the techniques profi-
ciently and appropriately, that is, altering the intervention as neces-
sary. In rehabilitation, small behavioral changes often take hours to
produce (after hours of planning) — at that, under the best of condi-
tions! Much of the work is similar to that of a detective — identifying
the functions and planning the engineering strategy — the rest is simi-
lar to a laboratory scientist: applying the procedures, recording the
effects, and deciding on the basis of the data what the next step
should be. But, in the final analysis, a good clinician is a scientist —
with each intervention a mini-experiment — and a humanitarian in
the full meaning of the word!
References and Bibliography
Davidson, P. O., & Davidson, S. M. (Eds.). Behavioral medicine: Changing
health lifestyles. New York: Brunner/Mazel, 1980.
Ferguson, J. M., & Taylor, C. B. (Eds.). The comprehensive handbook of
behavioral medicine. New York: SP Medical and Scientific Books, 1980.
216 Coping with Physical Disability
Ferster, C. B., & Skinner, B. F. Schedules of reinforcement. New York:
Appleton-Century-Crofts, 1957.
Fordyce, W. Psychological assessment and management. In F. H. Krusen
(Ed.), Handbook of physical medicine and rehabilitation (2nd ed.).
Philadelphia: W. B. Saunders, 1971.
Grossman. H. I. A new concept of disability. Journal of Rehabilitation,
1979, 45, 41-71.
Ince, L. P. Behavior psychology in rehabilitation medicine: Clinical appli-
cations. Baltimore, Md.: Williams & Wilkins, 1980.
Katz, R. C, & Zlutnick, S. (Eds.). Behavior therapy and health care: Princi-
ples and applications. New York: Pergamon, 1975.
Meyerson, L., Kerr, N., & Michael, J. Behavior modification in rehabilita-
tion. In S. W. Bijou, & D. M. Baer (Eds.), Child development: Readings
in experimental analysis. New York: Appleton-Century-Crofts, 1967.
Meyerson, L., Michael, J. L., Mowrer, O. H., Osgood, C. E., & Staats, A. W.
Learning, behavior and rehabilitation. In L. H. Lofquist (Ed.), Psycho-
logical research and rehabilitation. Washington, D.C.: American Psy-
chological Association, 1960.
Michael, J. L. Rehabilitation. In C. Neuringer, & J. L. Michael (Eds.), Behav-
ior modification in clinical psychology. New York: Appleton-Century-
Crofts, 1970.
Miller, J. H. Preliminary report on disability insurance. In Disability insur-
ance program, public hearing before the subcommittee on ways and
means. 94th Congress, 2nd Session, May 17, 21, 24; June 4, 11, 1976.
Morse, W. H. Intermittent reinforcement. In W. K. Honig (Ed.), Operant
behavior: Areas of research and application. New York: Appleton-
Century-Crofts, 1966.
Pomerleau, O. F. Behavioral medicine: The contribution of the experimental
analysis of behavior to medical care. American Psychologist, 1979, 34
(8), 654-663.
Pomerleau, O. F., & Brady, J. P. (Eds.). Behavioral medicine: Theory and
Practice. Baltimore, Md.: Williams & Wilkins, 1979.
Skinner, B. F. A case history in scientific method. American Psychologist,
1956,11, 221-233.
Terrace, H. S. Stimulus control. In W. K. Honig (Ed.), Operant behavior:
Areas of research and application. New York: Appleton-Century-Crofts,
1966.
Ullmann, L. P., & Krasner, L. (Eds.). Case studies in behavior m,odification.
New York: Holt, Rinehart & Winston, 1965.
15 The Chronic Pain
Syndrome
Killing with Kindness
Alexis M. Nehemkis and Carol Cummings
Description of the Problem
Chronic pain is one of the most disabling and expensive disorders in
the United States. The debihtation resulting from chronic pain is
widespread; it is long-lasting and frequently lifelong. An estimated
75 million Americans suffer from chronic pain, with 50 million of
those classified as partially or totally disabled. The annual cost of
chronic pain, in treatment and workdays lost, is estimated at a stag-
gering $57 billion. Twenty-three million people with back pain ac-
count for nearly one-third of these expenditures. The cost in terms of
human suffering is incalculable.
Although acute pain is usually a communication that the body is
not functioning properly, chronic intractable nonmalignant pain
serves no such useful warning purpose. Moreover, chronic pain in-
flicts physical, emotional, and economic stresses on the patient, his
family, and society as a whole.
The nature of pain is elusive; it is a sensation, a perception, and
an emotion. It is influenced by heredity, past learning, economic and
cultural traditions, as well as underlying physical impairment. To
date, no single therapeutic modality has proven completely safe and
effective in alleviating chronic pain.
To study and treat this complex disorder, in recent years numer-
ous pain clinics have been established in medical centers. These
clinics provide multidisciplinary programs, utilizing the expertise of
various specialities to treat the physical and psychological problems
of patients who suffer from chronic pain.
We are greatly indebted to our colleagues Paul S. Aim, M.S.W., who suggested the
concept of "dysynchronous retirement, " and Mary J. Lukin, Ph.D. for having illumi-
nated the concept of the working span in Gaussian terms.
217
218 V Coping with Physical Disability
The amount of disability experienced from chronic nonmalig-
nant pain is not correlated closely with the objective physical find-
ings. Patients who are referred to pain clinics may have no seriously
abnormal physical condition, or they may have had several unsuc-
cessful operations for pain relief. The majority have suffered job loss,
medication abuse, marital stress, and a history of many treatments for
pain, including drugs, injections, heat, massage, and other physical
therapies. They share a downward spiral of increasing disability to
which they themselves contribute in ways that can be described as
self-destructive. We shall demonstrate that this pattern fits the de-
scription of indirect self-destructive behavior.
Indirect Self-Destructive Behavior and the Chronic Pain Patient
The 1970s have witnessed a resurgence of research interest in indi-
rect self-destructive behavior. Indirect self-destructive behavior had
been identified in the writings of Durkheim in the last century and
by Menninger as early as 1938. However, it remained for Norman
Farberow to provide the impetus for systematic study of this pattern
of self-limiting behavior — behavior that included unconscious suici-
dal tendencies of which the individual seemed unaware or denied
that the actions were intended to destroy or injure self. In addition,
such behavior did not appear to have any immediate impact detri-
mental to the person. Whatever harmful effects ensued tended to be
long-term and cumulative. This pattern has recently been recognized
as a significant aspect of suicidal behavior, distinguishable from the
more familiar overt and direct forms of suicide.
In an effort to classify the situations that give rise to the concept
of indirect self-destructive behavior, Farberow (1980) has proposed a
four-fold taxonomy, based upon the interaction of the impact of the
self-destructive activity (on body or personality) and the source of
that activity (personality or preexisting physical condition).
As may be seen from Table 1, the intersection of the rows and
columns yields four main groups.
The first consists of those potential patterns of indirect self-
destructive behavior in which a physical illness is present and is
used self-destructively, with resulting serious injury or damage to
the body. The examples Farberow suggests include the exacerbation
of psychosomatic conditions, metabolic and cardiovascular diseases,
invalidism, and polysurgery patients. A second group includes those
cases in which an underlying physical condition is present, but the
main destructive impact is directed against the person or self. In-
cluded in this second group are those conditions which reflect a
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220 ' Coping with Physical Disability
functional or anatomic loss of some part of the body. This develop-
ment results in an extensive change in self-image or self-concept,
such as loss of limb, mobility, sensory loss.
A state of chronic nonmaiignant pain is another condition which
readily lends itself to self-destructive management and can exemplify
either one or both of the first two groups in Farberow's schema. There
is a voluminous literature on pain and a growing body of literature on
indirect self-destructive behavior, including a delineation of the char-
acteristics of various populations in which a chronic disease process
may be used self-destructively (e.g., Farberow & Nehemkis, 1979;
Nehemkis & Groot, 1980). However, despite the richness of this lit-
erature, very little research even touches on indirect self-destructive
behavior patterns and the chronic pain syndrome.
From our experience at a large Veterans Administration (VA)
medical center, a pattern of indirect self-destructive behavior emerges
in patients applying for treatment for their chronic nonmaiignant pain
problems. This pattern appears in rather characteristic fashion and
typically includes increasing disability without progression of the
"disease," diminished activity disproportionate to the physical find-
ings, resistance to a prescribed medical regimen, overuse of analge-
sics and sedatives, disregard of dietary guidelines, doctor-shopping
and doctor-antipathy, the undergoing of increasingly frequent medi-
cal treatments, and impaired family relationships, sometimes with
role-reversal. Typically, the patient does not consider himself to be
suicidal; his behavior is not intentionally directed toward self-injury
or a premature demise.
Suicide in the Chronic Pain Population
A striking finding from our review of the work of others was the
absence of evidence for suicidal behavior in the chronic pain popula-
tion (Farberow, Schneidman, & Leonard, 1963). Moreover, in our
own experience with pain patients, we did not find increased evi-
dence of suicidal history, communication of suicidal ideas, or in-
creased suicidal risk.
The low incidence of overt suicide, both completed and at-
tempted, among chronic pain patients in the VA system is all the
more surprising when compared to the trend for male veterans of
comparable age who have a fairly high rate of suicide: 37 and 143
(per hundred thousand) for the 45-54 and 55-64 age groups, respec-
tively. One possible explanation for this difference in suicide rates is
that a wide range of indirect self-destructive behavior is being sub-
stituted for the expected overt self-destructive activity.
The Chronic Pain Syndrome: Killing with Kindness 221
The chronic pain syndrome provides the means and opportunity
to employ indirect self-destructive behavior as a suicide substitute,
avoiding the stigma of overt suicide. Moreover, the extent to which
indirect self-destructive behavior frustrates health care personnel
may explain its adoption by some patients as a vehicle for expressing
dissatisfaction with the health care system and their own lack of
mastery over it. Or, alternatively, a second explanation is that pain
per se is simply not a significant predisposing factor in the decision
to commit suicide.
Killing with Kindness
The "career" of a chronic pain patient is not ordinarily regarded as
self-destructive, either directly or indirectly. The pain patient does
not take illegal medications; he does not engage in activities known
to be injurious; he does not fail to take the medicine or wear the
brace prescribed by his physician. In fact, he seems to be taking
good care of himself. He gets plenty of rest; he does not overexert;
he has enough to eat.
As we will demonstrate, it is his very effort to take good care of
himself that is, in fact, self-destructive. He is killing himself with
kindness, with the help of society, family, and the medical establish-
ment. In contrast to the diabetic who fails to take insulin, or the
patient with Buerger's disease who continues to smoke, the pain
patient's self-destructive behavior is even more indirect.
One of the manifestations of this self-destructive behavior by
the pain patient is that he rests too much. Many spend most of their
day reclining, even though bedrest has no curative or restorative
function in the treatment of chronic pain. This behavior is only
appropriate for acute pain, when rest gives the body a chance to
heal and prevents reinjury during that period of time. In the case of
chronic pain, rest only furthers the loss of muscle tone and strength
and leads to compounding effects of overweight if the dietary intake
remains constant.
The chronic pain patient typically is overmedicated with nar-
cotic analgesics and tranquilizers. Narcotics have no proper role in
the treatment of nonmalignant chronic pain. Their use over time
leads inevitably to the development of tolerance and physical and
psychological dependence, in addition to the clouding of conscious-
ness, constipation, and sedation, which are their active effects. Long-
time use of minor tranquilizers is not indicated for muscle spasms
and may increase depression as well as produce unwanted sedation.
It should be noted that the chronic pain patient rarely uses street
222 ' Coping with Physical Disability
drugs; his overuse is of prescribed medications, although he may
obtain them from more than one physician.
A third notable aspect of the behavior of the chronic pain patient
is his overutilization of the health care system. For example, low
back pain typically has exacerbations and remissions. These are to be
expected, and an increase in back pain — which has been present for
years — is not an emergency. Yet, many back pain patients will report
to the nearest emergency room when they have one of these to-be-
expected exacerbations. Their overuse of medications is part of this
pattern. When a patient returns again and again to a physician who
has exhausted the rational methods of back pain treatment, it is a
temptation to give the patient what he wants: a new analgesic or
tranquilizer prescription.
What motivates the chronic pain patient to indulge in overrest
and overmedication, when such activities contribute to the worsen-
ing of his condition? Our experience suggests that the motivating
factor is fear — fear of suffering additional pain. The patient's various
manifestations of self-destructive behavior are in reality attempts to
escape from pain. He reacts as if he were in acute pain, for which
rest and medication are legitimate short-term therapies. On a con-
scious level, he is afraid of causing harm to himself if he is physically
active. On another level, he is afraid of pain and governs all his
actions to avoid that event.
The MMPI and Chronic Pain
Previous reports of the psychological assessment of chronic pain pa-
tients have made frequent use of the Minnesota Multiphasic Person-
ality Inventory (MMPI). The typical MMPI profile for patients with
chronic pain has been described as an elevation of the scores on the
three scales which make up the neurotic triad (Scale 1 — hypochon-
driasis, Scale 2 — depression, and Scale 3 — hysteria) in the so-called
"Conversion V" profile, with hypochondriasis and hysteria more ele-
vated than depression.
This profile is more elevated in patients who are considered to
have a functional overlay to their pain as opposed to those patients
with strong organic evidence for pain and little evidence of psycho-
logical problems. Patients with chronic pain have a more elevated I-
3 profile than patients with acute pain.
Caldwell and Chase (1977) recast the interpretation of the 1-3
profile of the MMPI in such a way as to shed additional light on the
indirect self-destructive behavior of the chronic pain patient. They
The Chronic Pain Syndrome: Killing with Kindness 223
do this through a novel analysis of the characteristic chronic pain
MMPI profile.
Caldwell and Chase reinterpret Scale 3 (hysteria) as measuring
the patient's current level of fear of pain. As pain persists and be-
comes chronic, the progressive elevation of Scales 1, 2, and 3 reflects
a progressive increase in fear of pain and suffering as well as vul-
nerability of the body. Scale 3 (hysteria) appears to be most directly
reflective of the fear of pain. Scale 1 (hypochondriasis) reflects the
rise in fears of body vulnerability, including the feeling of damage,
the experience that "something awful is going wrong in my body,"
and the need for immobilization of the body so as not to aggravate its
already precarious condition.
The hypothesis by Caldwell and Chase of an underlying fear of
pain fits in well with the behaviors predicted by an elevation of
Scale 3: those who score high are seen as overly protective of their
bodies, highly sensitive to even minor pains and dysfunctions, and
peculiarly addictive to pain medications, sedatives, and tranquil-
izers. Paradoxically, the patient's tendency to protect himself exces-
sively against pain impedes his recovery. He inflicts invalidism upon
himself: the body is held with great care, movement is slow and
cautious, long periods are spent in almost total immobility, and exer-
cises are done with great pain-protective inhibition.
The chronic pain patient is internally rewarded again and again
for becoming increasingly constricted in his sphere of activities, for
placating others, and grasping at any sort of medical or surgical care
that will provide immediate reduction of his underlying fear of pain
and insulate him from future pain.
Society's Contribution to the Validation of Self-Destructive Pain
The Role of the Family
From a systems perspective, the disability of the pain patient cannot
be viewed in isolation from its effect on the rest of the family, which
has been forced to relate to him in new ways. As the husband be-
comes increasingly disabled, loses his job and withdraws, a vacuum
is created within the family. The wife, in her need to maintain the
family equilibrium, attempts to fill some of the roles the husband has
abandoned. A new pattern becomes established, and henceforth she
is resistant to further change and becomes invested in maintaining
the status quo.
224 ' Coping with Physical Disability
A 65-year-old retired engineer had not worked in 10 years because of
chronic low back pain. He spent much of his time either sitting in a wheel-
chair or walking behind it in case he should "collapse" and have to sit down
in a hurry. In the course of six weeks of aggressive hospital treatment, he
was eventually weaned from the chair to a walker and then to a single cane.
His wife never came to any of the weekly group meetings for families,
nor would she make individual appointments with her husband's therapists.
She cited her own ill health, visiting relatives, the long distance to the
hospital, and her belief that she was already well-informed about her hus-
band's health problems.
The patient was discharged in good spirits and walked without the aid
of a cane. Two months later, he was seen in the wheelchair once more,
pushed by his wife. She explained that it was much too dangerous for him to
walk unaided and that he had almost fallen on several occasions. (He had
never fallen during his six weeks in the hospital.) Two years after his dis-
charge, the patient is still confined to a wheelchair and making regular visits
to the hospital for examination and prescription of pain medications.
Should the family balk at accepting a pain patient in their midst,
the husband-patient may resort to a more explicit way of communi-
cating his impairment. One patient, who had been unemployed for
11 years because of back pain, posted a framed certificate (his Social
Security Disability Award) in his living room and pointed to it right-
eously whenever his children questioned his inactivity or reluctance
to participate in the household chores.
If the wife is unable to tolerate the added stress, marital conflict
may ensue. She becomes resentful and irritable and ceases to be
sympathetic and supportive. Divorce is not infrequent. Separation
from his wife costs the patient his only ally in his whole pain career.
He is left alone — helpless and hopeless.
In another variant, rather than becoming disgusted and abandon-
ing the marital relationship (i.e., obtaining a divorce), the wife may
redouble her efforts, thereby maintaining and strengthening the
cycle of indirect self-destructive behavior. She may adopt a maternal
role toward the patient, treating him as a sick offspring. "He's just
like one of the children," as one wife said, indulgently. Why this
reaction? The answer may lie in the common tendency, even among
professionals, to confuse irritability, crankiness, and whining with
pain and depression. The wife, according to this formulation, is
easily persuaded that her husband is not unpleasant but is actually
suffering. She interprets his irritability as increased pain. Thus, the
needs of both parties are fulfilled. He is rewarded for "taking it
easy," and she can maintain a picture of herself as nurturing a sick
and therefore deserving person. For example, Stembach (1974) states
The Chronic Pain Syndrome: Killing with Kindness 225
that neurotic depression is the most common diagnosis among pain
patients. The MMPI findings with chronic pain patients do not sup-
port this position, unless one views the pain behavior itself as a
depressive equivalent. In 74 chronic pain patients, the mean MMPI
profile showed hypochondriasis and hysteria scales significantly ele-
vated, whereas the depression scale was near normal limits (Cum-
mings, Evanski, DeBenedetti, Anderson, & Waugh, 1979). In fact,
these chronic pain patients rarely appeared clinically depressed.
How the Health Care System Perpetuates
Indirect Self-Destructive Behavior
By Polypharmacy. As suggested in an earlier section, the
chronic pain patient not infrequently is overmedicated with narcotic
analgesics and tranquilizers — the overuse of medications being part
of his self-destructive overutilization of the health care system. The
problem of chronic pain in nonmalignant disease complicated by
iatrogenic polypharmacy is illustrated in the following case.
A 47-year-old former department store executive came to a Veterans
Administration medical center because he could no longer afford private
medical care. He had undergone three operations on his back between 1955
and 1971. He was confined to a wheelchair and was obviously sedated; his
speech was slurred and slow, and his affect was flat. He reported that he
spent most of his time in bed. He had been taking large amounts of medica-
tfon for many years, all obtained by prescription from his private physician.
Included in his prescriptions were: Percodan, 2 tablets every 4 hours around
the clock; Tuinal, 2 capsules at bedtime; Etrafon Forte, 1 tablet 4 times a
day; Valium, 10 mg 5 times a day. Before he could be admitted to the pain
program it was necessary to admit him to the medical service partially to
detoxify him. Gradual tapering of his narcotic and barbiturate intake contin-
ued while he was in the pain program. He became progressively more alert,
was able to discontinue the use of his wheelchair, and resumed sexual rela-
tions with his wife for the first time in two years.
Not only may withdrawal from narcotic analgesics produce sig-
nificant relief of the general symptoms related to addiction, it may
markedly lessen the pain itself. Brodner and Taub (1978) describe
the sequence whereby long-term narcotic use, with resultant toler-
ance and withdrawal, may be associated with the exacerbation of a
pain syndrome, indistinguishable from the original pain complaint
for which narcotics were initially prescribed. If the clinician mis-
takes this exacerbation of pain, which is a complication of long-term
narcotic therapy, for a progression of organic disease, an escalating,
cyclic pattern of higher narcotic dosage, followed by increased pain.
226 Coping with Physical Disability
treated with more narcotics, inducing greater pain often ensues. At
this point, surgery may be recommended and performed.
By Polysurgery. The following cases illustrate the role of the
health care system in perpetuating self-destructive patterns through
poly surgical procedures:
A 33-year-old former heavy equipment operator was admitted to the
hospital for evaluation of recurrent abdominal pain. Four years earlier, while
he was in the army, a vagotomy and pyloroplasty had been performed be-
cause of symptoms suggestive of peptic ulcer. No evidence of ulcer was
found at surgery, but the patient continued to have abdominal complaints.
He was discharged with the diagnosis of psychophysiologic gastrointestinal
reaction. His symptoms continued, and three years later, a splenectomy and
partial pancreatectomy were performed. As his health did not improve after
this procedure, he was declared 100% disabled by his physician and never
worked again.
He had had many operations and illnesses prior to his Army service. He
had four operations for umbilical hernia and associated problems (extruding
metal stitches, etc.) between the ages of five and 16 years. When his wife
was pregnant, he suffered "morning sickness" while she did not. At the time
of his preinduction Army physical examination, he gave a history of head-
aches and cervical pain as sequellae to a head injury, recurrent back pain for
which he wore a brace, peptic ulcer disease, mumps, pancreatitis, and a
history of taking "nerve medications." Letters from two physicians docu-
mented his treatment for cervical pain and for peptic ulcer.
Years later, when the patient was trying to obtain a government pension
for service-connected disabilities, he said that his preinduction history was
inaccurate, and he had exaggerated it in an effort to avoid the draft. He was
granted only 10% disability.
The patient's MMPI profile was consistent with his long history of
expressing emotional conflicts via physical complaints. The pattern began in
childhood and was exacerbated by three unhappy marriages, the stresses of
combat service, and by his abdominal operations. He was encouraged to
seek outpatient psychotherapy to help him cooperate with his medical regi-
men and diet, to avoid invalidism, and to deal constructively with his chaotic
home life.
Three years later, he was referred to a pain management program. He
said that his health had continued to deteriorate and he now complained of
constant and severe headaches, "passing out without warning" once or twice
a week, abdominal pain from "11 pieces of loose wire" from previous opera-
tions, and severe "shakes." He was taking large amounts of tranquilizers and
codeine. He never had had the previously recommended psychotherapy.
A 55-year-old married housewife was admitted to the hospital because
of severe "knifelike" abdominal pain. She had undergone 17 operations, of
which 10 were abdominal or pelvic procedures. Despite her report of con-
The Chronic Pain Syndrome: Killing with Kindness 227
stant nausea and vomiting, she gained 20 pounds in the three weeks prior to
admission. Exploratory surgery was being considered, and the patient said
she would do anything to get rid of her pain.
In the course of her illnesses, her husband (who worked 12 hours a day)
and her 20-year-old daughter had assumed all the housework. The patient
complained that her daughter "doesn't understand me being sick"; she was
withdrawn and did not communicate with her mother. The patient said, "I
just suffer it out" rather than ask her family to give up any of their activities
on her account.
The patient was a plump talkative lady who recited her long medical
and surgical history in cheerful detail. Although she minimized any psycho-
logical problems, her illness had a negative impact on the family; they did
all the household chores, but both the daughter and the husband were with-
drawing from interaction with her, and her husband refused to participate in
marital counseling which had been recommended. For this patient, ill health
and repeated surgeries had become a way of life.
These two cases illustrate the tragic sequence that can ensue
from the chronic pain patient's proclivity for overutilization of the
health care system. In particular, they highlight the uncanny ability
of the pain patient to anticipate the medical institution's expectations
of an acutely ill patient. The incongruity between the patient's pre-
senting himself with chronic pain and emotional problems and his
manipulating the physician to legitimize the problem as an acute
medical illness illuminates the clinical progression of the polysur-
gery career (Devaul, Hall, & Faillace, 1978). Once the attending
physician accepts the patient's complaints of pain as an acute medi-
cal problem, clearly within his area of responsibility and meriting
vigorous attempts at relief, interventions designed to relieve acute
organic pain escalate but are bound to fail.
Unwittingly, the physician's inquiries help to shape the patient's
description of his own symptoms. Eager for relief, the patient contrib-
utes the "existence" of pain to conform with the physician's in-
quiries. It is axiomatic that the more frequently a patient is presented
at case conferences, the more accurately his symptoms will begin to
mirror a classical clinical syndrome — pure operant conditioning.
In his analysis of "I'homme douloureux," Szasz (1968) offers the
following characterization, which helps to explain how the "painful
person" sets forth on the road to polysurgery:
Patient and physician play complementary roles in this situation. The
patient insists that his problem is physical, not mental; the physician
insists that he is a medical doctor (neurologist, internist, etc.), not a
psychological healer (psychotherapist). Just as pain authenticates the
patient's illness as physical (in a way that anxiety, for example, does
228 ' Coping with Physical Disability
not), so it also authenticates the healer's role as medical (in a way that a
marital problem, for example, does not). Patient and physician thus
engage in a kind of tacit collusion to accept pain, and pain alone, as
proof of the "reality" of bodily illness, and hence as sufficient grounds
for the patient's adoption of the sick role. (p. 103)
Chronic Pain as Dysynchronous Retirement
Societally-induced pain on which the health care system is required
to focus may be far more prevalent and the victims more numerous
than is generally realized.
It may be assumed that the number of years spent in gainful
employment, like so many other sociopsychological characteristics,
follows a bell-shaped curve. Thus there are a great many individuals
who are employed for approximately 35 years during a lifetime but
only a few with an employment span as short as 15 years or as long as
50 years. Let us suppose that on the average this bell-shaped work-
ing span extends for 35 years from the time of entry into the stream
of employment. Take the case of a typical day laborer. He begins his
working life at an early age. By his fiftieth birthday — give or take a
few years — he has completed his working span. At age 50, more or
less, he is too young to be decently considered a retiree. He is not
eligible for a comfortable corporate pension, and he is too young to
claim his Social Security retirement benefit. A substantial proportion
of any adult population, a day laborer no less than a lawyer or physi-
cian, will have bony abnormalities and diseases of the lumbosacral
spine that are detectable on X-ray (Hadler, 1978). Moreover, the on-
set of low back pain is not necessarily associated with any extraordi-
nary pattern of use (e.g., external force, stress, posturing). Thus a
relatively minor injury or the flairing up of an old pain may provide
the basis via Social Security Disability or VA pension for a rational
and socially acceptable means of effecting the final exit from the
labor force. The complaint of pain and discomfort becomes chronic
because it is the ticket to a graceful transition. Pain becomes a neces-
sity in order to validate middle-age retirement — a "retirement" that
is out of synchrony with that time-span prescribed by social custom.
Here we see how the health care system is loaded with a social
problem that is not within its competence. Plainly, the "medicaliza-
tion of social problems" is extraneous to their solution. As we have
seen in the case of chronic pain as dysynchronous retirement, the
roots of the problem are embedded in the societal structure. Conse-
quently, a strictly biomedical approach fails to come to grips with the
real problem.
The Chronic Pain Syndrome: Killing with Kindness 229
When It Pays to Have Pain
A humane society is faced with the dilemma of caring for the genu-
inely needy while not removing the incentive for the speedy recov-
ery of its citizens from their acute illnesses. A well-intentioned net-
work of support for the disabled seems inevitably to remove the
motivation to return to work for some persons who would be forced
to do so in a less benevolent society. Both governmental and private
insurance systems face this problem.
Consider the case of a 54-year-old married former retail clerk who was
medically retired because of low back pain. He spent six weeks in the Long
Beach VA Medical Center Pain Program and was significantly improved in
that he had increased strength and endurance, reduced pain, a marked de-
crease in weight, and improved relationships with his family. He was seen
by a rehabilitation counselor, but expressed no interest in job seeking, since
he had adequate retirement pay and no financial incentive to work. It was,
therefore, a surprise to the staff when the patient announced his intention to
pursue vocational rehabilitation through a state program. This would involve
interviews, testing, job retraining, and an attempt to work in some capacity.
The patient admitted that he had no intention of returning to work. How-
ever, he explained, if he went through the vocational rehabilitation program
and demonstrated that he was unable to hold down a job, he would then be
entitled to receive $10 per month from a private insurance policy.
Inflexible Work Rules: The Contribution of Industry
In the unlikely circumstance that the chronic pain patient is not
rendered dysfunctional by polypharmaceutical prescriptions or poly-
surgical procedures, he will, on occasion, become the victim of the
industrial "system" — a system whose inflexibility can be detrimental
to the employee-patient, and the employer's own self-interest. A case
in point:
A 55-year-old crane operator had been unable to work for five months
because of increasingly disabling low back pain. He had an excellent work
record, having been employed for 23 years by the same firm. At the time
he was admitted to the Long Beach VA Medical Center Pain Program, he
expressed fear of returning to work since he needed strength and a fine
touch to operate the controls. He was worried that he might cause an
accident. Later, after six weeks of treatment, his pain had markedly de-
creased, he was less depressed, and he was once again physically fit. He
still planned to file for Workman's Compensation, however, feeling that his
back precluded future work. With much encouragement from the vocational
counselor and the rest of the program staff, he was persuaded to return to
230 ' Coping with Physical Disability
work. He did so and was initially able to work without difficulty. Three
months later, he reported that his firm was short of staff and he was now
being required to work 10 to 12 hours a day, seven days a week, to retain
his job with the company.
Conclusion
Most persons with low back pain or similar acutely painful condi-
tions make an uneventful recovery within weeks or months. Some
vulnerable individuals, whose organic impairment may be no
greater, progress into long-term disability. The vast majority of pa-
tients with chronic nonmalignant pain have musculoskeletal dis-
orders which are not incompatible with an active and useful life and
even employment in some capacity. Society bears the major respon-
sibility for maintaining their disability by indiscriminate monetary
awards, by a health system peculiarly responsive to the treatment of
acute illness, and by an industrial complex which is not interested in
employing individuals whose physical condition is imperfect.
The dynamics of a vulnerable personality cannot be changed on
a mass basis, and the larger societal contributions are not amenable
to immediate solution. However, aggressive rehabilitation, instituted
the moment the disability has stabilized, can and should be the goal
of the health care system in this country.
References and Bibliography
Brodner, R, A., & Taub, A. Chronic pain exacerbated by long-term narcotic
use in patients with nonmalignant disease: Clinical syndrome and treat-
ment. Mount Sinai Journal of Medicine, 1978,45(2), 233-237.
Caldwell, A. B., & Chase, C. Diagnosis and treatment of personality factors
in chronic low back pain. Clinical Orthopaedics and Related Research,
1977, 129, 141-149.
Cummings, C, Evanski, P. M., DeBenedetti, M. J., Anderson, E. E., &
Waugh, T. R. Use of the MMPI to predict outcome of treatment for
chronic pain. In J. J. Bonica, J. C. Liebeskind, & D. G. Albe-Fessard
(Eds.), Advances in pain research and therapy. Vol. 3. New York:
Raven Press, 1979.
Devaul, R. A., Hall, R. C. W., & Faillace, L. A. Drug use by the polysurgical
patient. American /owrna/ of Psychiatry, 1978, 135(6), 682-685.
Durkheim, E. Suicide. New York: Free Press, 1951.
Farberow, N. L., Schneidman, E. S., & Leonard, C. V. Suicide among gen-
eral medical and surgical hospital patients with malignant neoplasms
The Chronic Pain Syndrome: Killing with Kindness 231
(Medical Bulletin 9). Washington, D.C.: Veterans Administration De-
partment of Medicine and Surgery, February, 1963.
Farberow, N. L., Stein, K., Darbonne, A. R., & Hirsch, S. Indirect self-
destructive behavior in diabetic patients. Hospital Medicine, 1970, 6(5),
123-135.
Farberow, N. L., & Nehemkis, A. M. Indirect self-destructive behavior in
patients with Buerger's disease. Journal of Personality Assessment,
1979,43(1), 86-96.
Farberow, N. L. Indirect self-destructive behavior: Classification and char-
acteristics. In N. L. Farberow (Ed.), The many faces of suicide: Indirect
self-destructive behavior. New York: McGraw-Hill, 1980.
Hadler, N. M. Legal ramifications of the medical definition of back disease.
Annals of Internal Medicine, 1978, 89, 992-999.
Menninger, K. Man against himself. New York: Harcourt Brace, 1938.
Nehemkis, A. M., & Groot, H. Indirect self-destructive behavior in spinal
cord injury. In N. L. Farberow (Ed.), The many faces of suicide: Indi-
rect self-destructive behavior. New York: McGraw-Hill, 1980.
Rogers, D. E., & Blendon, R. J. The academic medical center: A stressed
American institution. The New England Journal of Medicine, 1978,
298(17), 940-950.
Sternbach, R. A. Pain patients: Traits and treatment. New York: Academic
Press, 1974.
Szasz, T. S. The psychology of persistent pain: A portrait of I'homme doulou-
reux. In A. Soulairac, J. Cahn, & J. Charpentier (Eds.), Pain. New York:
Academic Press, 1968.
IV
A Call to Action
The preceding chapters in this text have dealt with ways in which
society and its bureaucratically rigid institutions have contributed to
the second-class status of disabled people in our country. Although
most of the authors have included in their discussion descriptions of
how these discriminatory practices can be combated, the reader's
attention must be focused on the issue of remediation. I^any of the
contributors have underscored the need for the disabled themselves
to become involved in this process, to become political, and to or-
ganize themselves into a cohesive consumer group advocating, in-
deed demanding, the equality promised to them by law. As long as
the disabled leave their future in the hands of others, they will re-
main second-class citizens. It is only by committing themselves to
this struggle, by lending their expertise and energy to this fight, and
by assuming leadership roles in the consumer rights movement, that
their rights will in fact be secured. It was, for example, only after
blacks and women organized that meaningful progress in the civil
rights and the women's movements was made. Prior to this occur-
rence, they were patronizingly provided crumbs from the table, so to
speak — society's attempt to prevent them from becoming too vocal
in their demands for full equality. This part considers how the dis-
abled have made and can continue to make progress in their quest
for equal treatment under law.
Russell Bruch (Chapter 16) offers ideas on career/life planning
from outside the rehabilitation world. He maintains that the same
basic problems face all job seekers, disabled and able-bodied alike.
Using the method developed by Richard Bolles and published in
What Color is Your Parachute?, he shows how all job seekers can
exercise more control in the job search; how they can inventory
their skills, research organizations, and find a job without being at
the mercy of the job market. Staff members from the Berkeley
Center for Independent Living (Chapter 17) describe the philosophy
of the independent living movement, which best represents the dis-
abled minority's efforts to become political and regain control over
233
234 A Call to Action
their own lives. They discuss independent living centers, in which
the disabled themselves control the delivery of survival services, and
describe in depth their own housing assistance program to illustrate
how such a center operates. Bruch (Chapter 18) urges the disabled
to become consumer activists in the area of goods and services. She
describes, with numerous anecdotes and examples, how private busi-
nesses, from banks to supermarkets, have ignored America's larg-
est minority and discusses how the disabled can use their shopping
dollars to make the private business sector more responsive to their
needs.
In the final chapter of the text, Krause, coming from a slightly
different perspective, examines the economic and political climate
of the country and capitalistic values which contribute to the prob-
lems faced by the disabled.
16 Creative Vocational
Planning for the
Disabled ^
Russell Bruch
This chapter begins with a puzzle.
O.T..T . . . ; the reader is to determine what comes next in the
sequence.
Examining this array of letters and dots and anticipating the next
letter in the sequence exemplifies the degree to which one's per-
spective has become functionally fixed. The next letter in the
sequence is "F." One arrives at this answer by abandoning precon-
ceived notions regarding sequential patterning tasks. Most individu-
als tend to perceive this sequence as a series of dots and letters,
when in essence it is a series of dots. These dots, however, have
been duplicated by the first letter of the word for the position of that
particular dot. There is the "1" dot, hence "O," then the "2" dot and
the T, then the "3" dot and a "T," and so on.
The chapter starts in this way because it illustrates what often
happens when the issue of vocational planning is addressed: all too
often we lock ourselves into a fixed perspective that is not particu-
larly true or may even be false. The problem of defining problems in
their narrowest terms is one experienced by everyone who is job
hunting. Although this chapter is written for a text presenting the
special problems and discrimination faced by the disabled, this point
can not be stressed strongly enough. Everybody, disabled or not,
becomes locked into the same boxes when they become job seek-
ers— the same limiting, discouraging constraints and unidimensional
thinking which can keep them unemployed or underemployed. The
disabled certainly have additional problems when seeking employ-
ment and are often put into their own special box, usually marked
"seconds," but the basic problems and issues involved in job hunt-
ing are the same, regardless of the disability. Therefore, everyone
searching for a job must gain a broadened perspective when ap-
235
236 A Call to Action
preaching the issue of locating suitable employment. This chapter
presents new concepts and approaches which can be effectively uti-
lized in formulating meaningful and satisfying vocational goals and
identifying vocational alternatives.
It is necessary to assume a new perspective to acquire meaning-
ful and satisfying vocations because of two radical changes in
thought: first, so that the job seeker can be in control instead of
remaining vulnerable and at the mercy of potential employers, and
second, that the abilities or skills the job seeker possesses are more
important than his particular disability or the skills which he lacks.
Because employers have the same tendency as that of the general
public of focusing on functional deficits, this is an especially impor-
tant factor to recognize when the job seeker is a so-called "disabled"
person. These employers focus on what the disabled cannot do as
opposed to the able-bodied majority. Such thinking, however, se-
verely curtails the employer's ability to critically appraise the dis-
abled applicant's special skills and aptitudes.
Special Aptitudes of the Disabled
An appropriate term to use in describing the "normal" segment of
our population is "temporarily able-bodied." This term is appropri-
ate to use because everyone has some physical capabilities he may
not always have and the disabled do not possess. On the other hand,
the disabled, because of their disability, have some special skills and
capabilities that most able-bodied individuals do not have. At least
one author (Bolles, 1981) has considered this issue and compiled a
list of possible special strengths and skills which might arise from
disabilities of various kinds.
Broadening the Vocational Search
As inferred from Table 2, what is necessary in obtaining meaningful
and rewarding work is the ability to focus one's attention on
strengths rather than on limitations the individual might possess.
Essential in securing a suitable position is the ability to discover
what the job applicants have to offer, who they really are, and what
combination of likes, dislikes, knowledge, and talents make them
unique. One should not concentrate on only what the job seeker has
to offer the world of work, for that is only one part of one's life. Also
to be considered is what the applicants have to offer the world of
Creative Vocational Planning for the Disabled 237
education and the world of leisure, elements of life that are just as
important to explore as the skills these persons might possess. In
essence, what is being suggested is an approach to job hunting as life
planning, which is not the same as career planning. Life planning
takes career, that is, work, into account but also includes likes and
dislikes in use of leisure time and ongoing learning in order to obtain
a comprehensive picture of the individual. Bolles (1977) discusses
the importance of these three areas. He points out that job seekers
often are unable to integrate them in any meaningful way. People
see themselves as either playing or working or going to school. Usu-
ally these three activities are kept separate, and quite often they are
even seen as being in conflict with one another.
Identifying Potential Job Markets
Most people do not realize that 80 percent of the available jobs are
not listed. Saying that another way, if a person seeking employment
were to use all the traditional methods of job hunting — going to a job
counselor, looking at the want ads, submitting a resume, and so on —
they would at best locate only about 20 percent of the jobs that are
actually available at a given time. This means that most jobs avail-
able are not publicly advertised. If one is creatively to assist people
in locating employment, ways must be found to tap into that hidden
job market. Following are some ideas as to how this can be done.
Although the statistics vary a bit on the average length of a job
hunt, the important fact to realize is that finding a job — especially a
good job — usually takes a long time, sometimes up to 9 months! The
job applicant should, therefore, be prepared for some months of hard
work to find the right position.
One reason people have difficulty finding a job is that they do
not have a clear picture of that for which they are looking. They have
no concept of what kind of job they would most enjoy. The job
seeker can be assured that if he or she does not know what type of
job to look for, he or she will find almost everything but that — and
take it! Unfortunately, many people let the job market control them
rather than determining what is important to them and actively seek-
ing that. Figure I is a diagram of what a job could look like.
At the core of this flower-like figure are the transferable skills
we each have. In essence, there are three kinds of skills: transfera-
ble, adaptive (how we adapt to change), and work-content (those
rooted to a specific area of work). Regardless of the many kinds of
skills one might have, what must be first identified are skills one
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240
Creative Vocational Planning for the Disabled
241
VeofUr'
Sptcid
Levtl
Tmnsfemhle^
Skgs
Geo^rapku
Vurposes,
Goals €^
Vakua
Conditions
Figure 1. Diagrammatic representation of a job. (From The Quick Job-
Hunting Map, Beginning Version, by Richard N. Bolles and Victoria B. Zen-
off. © Copyright 1979 by Richard N. Bolles and the National Career Devel-
opment Project.)
currently possesses. In considering this, the job seeker must think of
skills as being more than those things in which he was formally
trained, like typing or aircraft maintenance. Skills include negotiat-
ing and peacemaking, motivating and energizing, organizing, deco-
rating, knowing your city, and so on. To assess the breadth of skills
possessed totally, one must broaden the perspective to include all
one's capabilities.
One method of focusing on the problem of identifying personal
skills has been suggested by Crystal and Bolles (1974). Their approach
maintains that to focus on the center portion of the flower, the trans-
ferable skills, one needs to write an autobiography. From that autobi-
ography, sentence by sentence, paragraph by paragraph, talents and
skills are extracted. Because that is a difficult task, alternative models
242
A Call to Action
have been developed which can be used to identify transferable
skills. Consider, for example, Figure 2.
Job hunters should imagine that they are at a party and answer
the following questions:
1.
2.
If you had to choose one comer to which you would like to
go simply because the people there were the most interest-
ing or intriguing to you, what comer would that be?
If for some reason all the people in that comer left the party,
to which comer would you next go, considering which of the
remaining groups you would most enjoy and the kind of
people with whom you would want to spend the longest time.
People who
have athletic or
mechanical ability,
prefer to work with
^objects, machines, tools,
plants, or animals, or to
be outdoors.
People who
like to observe,
learn, investigate,
analyze, evaluate,
or solve problems.
People who like
to work with data, have
clerical or numerical
ability, carrying things out
detail or following
through on other's
instructions.
People who
have artistic,
innovating or intuitional'
abilities, and like to
work in unstructured
situations, using
their imagination or creativity.
People who like to
work with people —
influencing, persuading
or performing or
leading or managing
for organizational
goals or for
economic gain.
People who
like to work
with people —to
inform, enlighten,^
help, train, develop,
or cure them,
or are skilled
with words.
Figure 2. Identifying transferable skills. (From The Quick Job-Hunting
Map, Beginning Version, by Richard N. Bolles and Victoria B. Zenoff. ©
Copyright 1979 by Richard N. Bolles and the National Career Development
Project.)
Creative Vocational Planning for the Disabled 243
3. Finally, ii those people left the party, to which comer would
you go?
Answering these questions can provide much valuable information
about an individual's sense of personality, identity, talents, and
skills. This exercise, based on the work of Holland (1973), suggests
that jobs are basically people environments. Prior to seeking employ-
ment, one must be able to recognize preferred people environments.
Returning to the job picture (Figure 1), examine the top petal. A
portion of Holland's theory suggests that people are not only at-
tracted to others who have similar kinds of interests, but these pref-
erences provide a reliable picture of their own interests. For readers
who are familiar with interest testing, the Strong-Campbell Interest
Inventory now includes these same six people environments. Hol-
land continues by saying that we are not only attracted to people
with similar kinds of interests but also to those whose skills are
similar to our own. Skills are here defined in a very encompassing
way, including all those talents, abilities, and competencies an indi-
vidual possesses. If professional counselors are to assist clients with
the problem of job finding, they must first help them focus on their
abilities. An efficient way of obtaining this information has been
suggested by Bolles (1979) in The Quick Job-Hunting Map, Ad-
vanced Version.
Next, it is important that the job searcher be helped to identify
the geographical area in which he or she would like to live. For
many that might seem to be predetermined: Most people find that
they must continue to live fairly close to where they currently reside.
If, however, there are no constraints placed on individuals, allowing
them to live anyplace, how would they describe those places? What
factors would be important to them? Some might be the physical
characteristics and the kinds of people mentioned earlier.
The next petal deals with working conditions. What factors allow
people to do their best work? We all thrive in unique environments
just as plants are made to exist in certain environments. The factors
one usually needs to examine are the physical characteristics of the
work area.
The next petal of the job flower consists of purposes, goals, and
values. There are several ways to determine purposes, goals, and
values. One method, developed at the Lawrence Livermore Labora-
tory, involves use of a value card sort. It is a quick way to examine
approximately 40 different values. Each value is printed with its
definition on a separate card. As one goes through the cards, a deci-
sion must be made whether that particular item is valued always.
244 \ A Call to Action
sometimes, or not at all. After the cards have been divided into cate-
gories, the person is asked to examine his or her present job and
determine if it meets his or her value structure or if the job being
considered meets those values identified.
A second method one could employ to clarify goals is to ask the
job seeker: "If you had all the money you would ever need or want
for the rest of your life, what would you do with your time?" And, "If
you had to give away a large sum of money, to whom or for what
would you contribute it?" Before answering these questions, the in-
dividual must consider what kinds of concerns or issues, causes, or
programs he or she would like to support. The answer to these ques-
tions can help in selecting work that is truly consistent with the
person's values and goals in life.
The next petal of the job flower, level of responsibility, refers to
the nature of the working relationship wanted with coworkers. To
determine this the following questions should be asked: "Would you
rather work alone or with others?" "How many others?" "Do you
want to give directions or are you more comfortable taking them?"
The answer to this last question is usually related closely with
money. In general, the more responsibility one assumes in a job, the
higher the salary associated with that job. This becomes critical if
making money is especially important. If so, one must be prepared to
assume more responsibility than perhaps wanted.
The last petal on the job flower contains the special knowledges
that the job seeker possesses. These include things that one knows
how to do as opposed to necessarily doing them. For example, one
can have a knowledge of teaching because he understands the prin-
ciples of teaching. That is different from necessarily being able to
teach. To assess these special knowledges accurately, individuals
must be able to break out of the boxes that they may have put them-
selves into— namely, identifying themselves in a certain role and,
therefore, able to do only that one thing.
By examining each of the issues proposed by the petals of the
job flower, a job searcher should have a fairly clear picture of the
kind of job preferred. Next, one needs to seek out the job which
matches the personal areas which have just been defined.
Interviewing for Information
There is a three-step process of interviewing for information which
every job hunter should participate in prior to requesting a position.
Not only is the information gained in this process necessary to the
Creative Vocational Planning for the Disabled 245
job hunt, it also provides excellent practice at interviewing before
one must assume the vulnerable role of job applicant.
The first step in this process, after having clarified what is im-
portant from the seven items in the job picture, is to practice inter-
viewing. Initially it would be advisable to begin in some area in
which the job seeker is fairly sure he or she would not be hired.
Doing so would reduce the pressure and anxiety the applicant might
otherwise experience. Making an appointment with someone who is
in that field will reduce the anxiety felt, for the applicant will be the
one interviewing, not vice versa. This exercise places the job seeker
in control. Questions one might ask include:
1. How did you become interested in this work?
2. What do you like about it?
3. What do you dislike about it?
4. Will you refer me to three, four, or five other people who
share our mutual interest?
If this exercise is performed several times, the job seeker will de-
velop some valuable interviewing skills and will be preparing for the
next step: informational interviewing. In the information interview-
ing step, the needs of a potential employer must be determined.
What is he looking for in a potential employee, and what kinds of
problems exist in the company that this employee might be expected
to resolve? Sometimes the answers to these questions are easy to
ascertain — as easy as learning why the last person was fired if that
was the case. At other times, extensive research may be required to
answer them. But, however long it takes, the applicant must be able
to show a familiarity with and interest in the company and demon-
strate to the potential employer that he has the skills to meet the
employer's needs.
Finally, after having done this research and determining what
the employer and job seeker wants, one must identify who in the
company has the power to hire. In most cases, the personnel depart-
ment has little or nothing to do with selection except, perhaps, in the
broadest sense of screening. What one needs to determine is who has
the most authority or the final word with regard to the position
sought. This might necessitate meeting that person face to face to
demonstrate skills possessed and inform him that you are indeed the
person who can solve his problems.
246 \ A Call to Action
Conclusion
What is suggested in this chapter is a nontraditional approach to the
job hunt. Applicable to both the able-bodied and the disabled, this
approach emphasizes the need for two new perspectives in job hunt-
ing: that the job seeker can be in control of his job hunt and that the
abilities the person has are more important than the disabilities he
possesses. Specific technique^ for using these new ideas are then
described. These techniques increase the individual's knowledge
about both himself and employment possibilities. As a result, obtain-
ing a job becomes a creative, self-fulfilling enterprise rather than a
mechanical, automatic procedure. In the final analysis, then, the job
searcher himself is the person who is most familiar with his needs
and requirements for employment. Thus he must do much if not all
of his own job hunt or career change. If a vocational counselor as-
sumes total responsibility for this process, the client will have lost
his power and abrogated his destiny to another.
References
Bolles, R. The quick job-hunting map, advanced version. Berkeley, Calif.:
Ten Speed Press, 1979.
Bolles, R. The three boxes of life and how to get out of them. Berkeley,
Calif: Ten Speed Press, 1977.
Bolles, R. What color is your parachute?: A practical manual for job-
hunters and career-changers. Berkeley, Calif.: Ten Speed Press, 1981.
Crystal, J., and R. Bolles. Where do I go from here with my life? Berkeley,
Calif: Ten Speed Press, 1974.
Holland, J. L. Making vocational choices: A theory of careers. Englewood
Cliffs, N.J.: Prentice-Hall, 1973.
17 Independent Living
The Right to Choose
Center for Independent Living
Independent living is freedom of choice to live where and how one
chooses and can afford. It is living within the community in the neigh-
borhood one chooses. It is living alone or with a roommate of one's
choice. It is deciding one's own pattern of life — schedule, food, enter-
tainment, vices, virtues, leisure, and friends. It is freedom to take risks
and freedom to make mistakes. (Laurie, 1979)
The dignity of risk is what the independent living movement is all
about. Without the possibility of failure, the disabled person is said to
lack true independence and the mark of one's humanity — the right to
choose for good or evil. (Dejong, 1979)
Independent living refers to disabled peoples' ability to actively
participate in society — to work, to raise a family, and to be able to share
in the joys and responsibilities of community life. (CIL, 1979)
A text which examines the second-class citizenship of the dis-
abled and attempts to discuss means of combatting discrimination
must, of course, include in its discussion the independent living (IL)
movement, probably the brightest spot in the disabled people's
struggle to achieve full rights and benefits. Spawned in the early
1970s by small groups of disabled students at the University of Illi-
nois and at the University of California (Berkeley), the idea has
caught on and spread throughout the country, beyond student com-
munities. It is now affecting state and national policy, culminating in
the passage of the 1978 Amendments to the Rehabilitation Act which
authorize funding for "Comprehensive Services for Independent
Living."
The IL movement represents the efforts of the disabled to organ-
ize, to become political, and to take greater control over their own
Material for this chapter was prepared by Michael Winter, Bruce Curtis, Mary Dud-
ziak, Judy Humann, Belinda Stradley, Jerry Wolf, Frank Folsie, and Barbara Cappa.
247
248 A Call to Action
lives. The movement is based on the disabled population's desire to
lead the fullest lives possible, outside of institutions, integrated into
the community, exercising full freedom of choice. The movement
began (as is described below) when severely disabled students
moved out of their residential hospital settings into the community
and organized their own system for delivery of survival services.
Since then, not only has the scope and number of such service deliv-
ery centers grown, but the philosophy in which they are grounded
has spread throughout the rehabilitation world, challenging many of
the old attitudes and policies toward treatment of the disabled.
As has been discussed by Dejong (1979), the IL movement has
its roots in a number of other significant social movements and ideas
coming out of the 1960s and 1970s: civil rights, consumerism, self-
help, demedicalization, and deinstitutionalization. Drawing from
each of these, the disabled of the IL movement have developed
programs which differ significantly from traditional rehabilitation
service delivery programs in a number of ways. Cole (1979) points
out these differences in the areas of goals, methods of service deliv-
ery, and style of program management. With respect to goals, the IL
programs insist on "client self-choice rather than incorporation of the
client into a set of goals established by program managers, service
professionals, or funding mechanisms. . . ." Service delivery is not
monopolized by professionals but instead is usually carried out by
peer counselors. Personal attendant care is directed by the disabled
consumer himself, who hires and manages his own attendant. Fi-
nally, the programs are run by the disabled themselves; the man-
agers are not professionals but consumers, as it is assumed that they
know best the needs of the disabled.
To introduce the reader to the concept of IL, the editors asked
us to describe the philosophy, development, and operation of our
program. Since the Center for Independent Living (CIL) has grown
quite large and come to offer a sizeable number of services, we have
chosen to focus on just one of our services — housing assistance — to
show how the IL philosophy is translated into action.
Historical Overview
People with disabilities have a long history of forced dependency. In
1504 Henry VII legally authorized the disabled to beg without fear
of punishment. The English Poor Laws of 1601 mandated that the
primary responsibility for care of disabled people was with their
Independent Living: The Right to Choose 249
families. If the family could not or would not provide for adequate
care, a disabled person would then go to live in an alms house. In
the late 1700s and early 1800s, alms houses became very popular
throughout the United States, for both the disabled and the poor.
People with a variety of disabilities were incarcerated in these insti-
tutions because of their impoverished status and the custodial atti-
tude of society. In most states there are still institutions in which
disabled people can live, though they are often segregated by disa-
bility type. The dehumanizing conditions prevalant during the last
250 years still exist in many of these modem institutions because of
the same societal attitudes and lack of fiscal support.
Sterilization of criminals, the mentally ill, and the poor became
popular around 1910. This became the only alternative to life-long
sexual segregation of the mentally and physically disabled in custo-
dial institutions. By 1937, approximately 28 states had laws allowing
the sterilization of "defective" human beings to reduce the genetic
possibility of producing still more disabled people. Some cities
passed ordinances, still in effect today, prohibiting the appearance in
a public place of any person who is "diseased, maimed, mutilated, or
in any way deformed so as to be an unsightly, or disgusting object."
The Immigration and Naturalization Service can still deny a perma-
nent visa to an immigrant or member of his family who has a physical
defect, disease, or disability. Under old common law, people who
were deaf could not be a witness nor make a contract or a will,
because of an assumption of incompetency. They still can not serve
as jury members in some states and cities.
Throughout these centuries of prejudice and oppression, society
has made dependency seemingly inescapable. Many disabled people
cannot work except in sheltered workshops, at times for less than
one-half the minimum wage. Travel on commercial transportation is
impossible for many physically disabled people unless they submit
to patronizing or inconveniencing regulations that vary from com-
pany to company. Many disabled people cannot live in their own
homes because funding and personal care attendants are available
only if the disabled are segregated from society in institutions. There
have been numerous case reports of disabled parents who have had
their children taken from them on grounds that the child would not
be raised in a "normal environment." In divorce proceedings be-
tween a disabled and an able-bodied parent, custody has tradition-
ally been awarded to the nondisabled parent based on this kind of
prejudicial concept of normality. Thus people with severe disabili-
ties have lived under centuries of legalized dependency and ostra-
250 ' A Call to Action
cism. Many laws have been passed supposedly illustrating the liber-
alization of society's attitude toward disabled people; yet disabled
people have come to realize that the discrimination in the commu-
nity did not really end with such legal enactments. Discrimination
continued because oppressive changes were always being intro-
duced to limit society's obligations to the disabled. The few progres-
sive changes that were introduced into the social system were never
supported financially. It has become obvious that institutional preju-
dice will not be overcome by well-intentioned but uncoordinated
and financially unsupported movements.
It is under these conditions that disabled people have existed
with little or no services. The few services provided were crippled
by the bureaucratic red tape and regulations which kept the vast
majority dependent. Not available was a coordination of services that
could break through this vicious cycle of dependency. With this in
mind, the disabled themselves organized the Center for Indepen-
dent Living (CIL) in 1972.
Center for Independent Living
CIL: the bold, green letters are visible for blocks away from the
former car lot in downtown Berkeley. It was the tumultuous times of
the late 1960s and early 1970s that drove the former residents from
this protest-ridden area. But it was that same spirit of protest and
change which engendered a movement soon to replace the fleet of
sports cars on Telegraph Avenue.
It started on campus, as did so much of the activity of that era.
The cast of characters was small: half a dozen severely disabled
students living in Cowell Hospital at the University of California,
Berkeley. Faced with such severely disabled persons as Ed Roberts
(now director of the California Department of Rehabilitation), a post-
polio quadriplegic who spends much of his time in an iron lung, the
university considered residence in the hospital to be the only way
these students could receive necessary services.
But the students found the hospital to be a sheltered, custodial
environment and began making other plans. Their intent was to es-
tablish a program that would meet their needs for supportive ser-
vices in the community, not in another medical residential facility.
The program was to have three guiding principles:
1. Those who know best the needs of disabled people and how
to meet those needs are disabled themselves.
Independent Living: The Right to Choose 251
2. The needs of the disabled can be met most effectively
through comprehensive programs which provide a variety of
services.
3. Disabled people should be integrated as fully as possible
into their community.
The physically disabled students program (PDSP) was estab-
lished through U.S. Office of Education seed money, and it began
providing community based services in July of 1970. Of its nine staff
members, five were severely disabled or blind. Through their efforts,
many disabled students were able to move out of the hospital and
into the community.
That the program addressed previously unmet needs was appar-
ent through its steadily increasing clientele of students and nonstu-
dents alike. The program's ability to serve disabled students was
soon restricted, however, by the demand for services by the nonstu-
dent community. Plans were then developed for a community-based
organization founded on the same principle as PDSP but not affili-
ated with a particular institution. It was to be called the Center for
Independent Living.
Seven years since its inception, GIL has grown to a staff of 140
people, over half of them disabled. The range of services has also
been expanded greatly. Yet the focus of the program remains the
same: The disabled providing services for the disabled with the in-
tent of maximizing the disabled person's control over his or her life.
GIL is, most emphatically, not a residential facility. The care
services (such as attendant referral, housing assistance, blind ser-
vices, deaf services, transportation, financial advocacy, job develop-
ment, peer counseling, and wheelchair repair) are designed to en-
able clients to live independently in the community.
One of GIL's first clients was Phil Draper. At seventeen Phil had
been a typical high school student. His idea of weekend fun was
cruising the streets of Vallejo, Galifomia and drinking beer. One
night, while out driving with friends, his car crossed the center di-
vider. Although he does not remember the events that led up to the
accident, its results have changed the direction of his life.
Phil broke his neck, leaving him a quadriplegic. He spent most
of the next three years in and out of hospitals. He then moved to
Oakland. However, without adequate supportive services, his mobil-
ity and activity were limited, and soon he became very, very bored.
Phil's health deteriorated, and he found himself back in the hospital
with pressure sores. While there he met a disabled person who told
him about PDSP. "It was the first time I'd heard of a central resource
252 A Call to Action
disabled people could turn to for survival services," he says. He
decided to return to school, but along the way got involved in discus-
sions about setting up a similar organization in the community. Phil
became one of the original incorporators of CIL. He is now its execu-
tive director. The services provided at CIL are very important to him
because, like many other staff members, he uses them himself. "It's
hard to describe the frustration disabled people can face. [You] worry
about whether your attendant will come in. If your attendant doesn't
come, will you be stuck in bed all day? Who will feed you? If your
chair breaks down you have no mobility, you're cut off. CIL services
have relieved me of the twenty-four hour worrying about surviving."
Once those basic needs are taken care of, Phil continues, "disabled
people can take control of their lives, become involved in decision
making, and start pursuing those things everyone else does."
At CIL, independence does not necessarily mean living by your-
self or doing things totally by yourself. Rather, it means having as
much control as possible over your environment. It means knowing
what you need and making decisions about meeting those needs. For
example, if you can get out of bed and get dressed by yourself but it
takes you three hours, when, with the help of an attendant you can
do it in half the time, use of an attendant frees your time and energy
to do other things. You do not have to struggle every morning to get
yourself out of bed in order to be independent. As long as you have
control over your attendant so that you are making decisions about
when you get up, what you will wear, what you will eat, and so on,
then you are making choices.
Since CIL's inception in 1972, twenty similar programs have
been established in other parts of California. All are based on CIL's
model of comprehensive services and consumer control. By compari-
son, there are only eight or ten independent living programs in the
rest of the country. It is not by happenstance that programs like CIL
have flourished in California as opposed to elsewhere in the country.
Since 1958 California has had an in-home supportive service program
which provides funding for low-income disabled people in need of
assistance in activities of daily living. This allows disabled people to
hire attendants to assist in bathing, dressing, cooking, shopping, and
other needs. Additionally, California's medical program allows low-
income disabled persons to receive necessary equipment, such as
wheelchairs, and to keep this equipment maintained.
CIL's policy of consumer control is important for many different
reasons. First, since disabled people have designed their own ser-
vice delivery system, a program which meets their self-defined
needs was thus developed. Traditionally, facilities had not been ad-
Independent Living: The Right to Choose 253
dressing the problems encountered by CIL's severely disabled
founders.
Disabled people controlling their own independent living pro-
gram is, in itself, a model of the purpose of the organization. Dis-
abled people in the CIL administration make decisions about the
service program which, in turn, facilitates their clients' ability to
make decisions in their daily life. Just as CIL is designed to enable
disabled people to take control of their personal lives, it is also a
model of control by disabled individuals of the larger institutions
which affect their lives. This concept is important because through-
out history disabled people have been excluded from the social
mainstream, excluded from positions of authority and power, and so
they have been unable to participate in the decision-making proc-
esses which govern all our lives. The resulting social policies of
segregation are just beginning to be fought through such legislation
as Title V of the Rehabilitation Act of 1973 which forbids discrimina-
tion in federally funded programs on the basis of disability.
Disabled people, however, are in a double-bind. Their struggle
to fight discrimination is hampered by the lack of services to meet
their needs for daily survival. Without services, civil rights laws are
not vvorth the paper they are written on. If there were no attendant
referral services, if there were no money to hire attendants, if assis-
tance in finding accessible housing did not exist, if the disabled did
not have wheelchair repair and accessible transportation, there
would only be civil rights for people who could not get out of institu-
tions to exercise those rights.
However slowly, gains are being made. Through the 1978 Reha-
bilitation Act Amendments, Congress authorized federal funding for
programs like CIL. While the appropriations levels have been far
below the amounts authorized, they will enable the start up of a
limited number of programs. As more disabled persons have access
to independent living services, their energies can turn from daily
survival to a fuller involvement within their communities.
CIL is predicated on the belief that disabled individuals, irre-
spective of their particular disability, must begin to work together.
Although the needs of persons who are blind, deaf, physically dis-
abled, mentally retarded, substance abusers, or have other disabili-
ties are sometimes different, lack of appropriate services results in
the same systematic discrimination in the areas of education, em-
ployment, transportation, housing, and medical care.
One of the major services provided by an independent living
program such as CIL is aid in securing (and retaining) appropriate
housing. Although by no means the only service offered by indepen-
254 A Call to Action
dent living programs (ILPs), nor even the most important, residential
provision or registry is offered by 62 percent of the ILPs currently
functioning and was rated by the programs themselves as one of the
three most important services ILPs provided to the disabled. Indeed,
independent living would not be possible without physical housing
units in the community available to the disabled consumers. Resi-
dential location is also one of the most difficult and troublesome of
services to provide, for both rehabilitation settings and independent
living centers. Especially in rural areas or areas in which there is a
great demand for available rental units, making them both expensive
and difficult to obtain, the provision of housing will require much
ingenuity and hard work.
Because provision of suitable housing is such a difficult problem
and typical of most dealt with by ILPs and traditional rehabilitation
centers, we have chosed to discuss it in depth, thereby illustrating
how an ILP such as CIL works.
Housing Department of CIL
Background and Purpose
Independent living is not possible without a place to live. Housing is
the most critical need of people desiring to live independently. We
at CIL believe that it is the right of all persons, regardless of physical
condition or age, to adequate, safe, and healthy housing. To create
environments that make it possible for physically disabled and el-
derly persons to live independently in the community, housing must
be available that is responsive to the special needs of these popula-
tions and is not segregated from the mainstream of society. All
people, we feel, should have choices of where to live. To offer these
choices, there first must be affordable dwelling units for the physi-
cally disabled and elderly, most of whom have low or fixed incomes.
These dwellings must be rental units, as home-ownership is an en-
terprise beyond the financial means of most of the disabled and the
elderly. Although there is a shortage of rental units in Berkeley (and
in many metropolitan areas), especially with the current trend to-
ward condominiums, this availability is vitally necessary to integra-
tion of the disabled into the community. These units must also be
accessible and suitable to the needs of the disabled.
The appropriate level of support from services of a facility and
from the community encourages independence. To determine that
appropriate level, consciousness raising and counseling about the
Independent Living: The Right to Choose 255
home situation are needed. In this way it is determined exactly what
is needed by each cHent, and psychological blocks to independence
are alleviated. Technical assistance with modifications may be nec-
essary to make the living unit usable. Barriers to mobility, both in
the home and into the larger environment, may need to be removed.
Without mobility, participation in the community is denied. In mak-
ing these changes, services must be designed to allow the disabled
person to progress from dependency to his full potential.
Housing necessarily entails more than the physical structure
alone. Other aspects of the environment must also be considered,
such as recreation, transportation, work, and finances. Government
regulations that encourage appropriate housing solutions for the
physically disabled and elderly populations need to be created or
implemented as some disincentives currently exist in present regula-
tions.
To accomplish the above goals, a comprehensive, programmatic
approach to housing was developed at GIL with the following ob-
jectives:
1. Provide listings of vacant housing, indicating accessibility.
2. Help with modification design for the home: sketch plans,
estimate costs, locate funds, refer contractors.
3. Ensure that the wider environment be accessible to and us-
able by all people.
4. Gounsel people on their housing rights and on problems of
adjustment to the environment. Refer people to necessary
support services.
5. Develop financial support for renters and homeowners.
History of the Housing Department Services
The Housing Department at GIL was the last of the survival core
services to receive funding. This service was provided because of
the large number of requests by clients searching for a place to live.
Because GIL had no funds to pay a staff, we began by using an
all-volunteer staff We searched for foundations that would fund ser-
vices of this type, but at the time there were none (this was pre-1978
legislation authorizing funding for ILPs). In 1976, we submitted an
application for a Gommunity Development Block Grant to the Gity of
Berkeley. Our application was approved by the Gity Gouncil for
about one-third of what we requested. However, it was rejected by
the Department of Housing and Urban Development (HUD) be-
256 A Call to Action
cause it did not comply with the funding requirements of the Com-
munity Development Act, the federal law under which cities apply
to HUD. Eventually it was approved, and our funding began April 1,
1977.
When we began providing services, we thought that we should
take our clients to look at available rentals, but we soon discovered
that this service was too time-consuming. Such a procedure severely
limits the number of people we can serve, inasmuch as it is some-
times weeks before suitable housing may be located for a particular
client.
The vacancy rate in this area (Berkeley, Albany, and North Oak-
land) is approximately 1%; when accessibility is taken into account,
this 1% figure is reduced even further. The severe housing shortage
drives up rental prices to a level impossible for someone on SSI or
SSDI to afford. Our problem, of course, is to locate housing that is
available, affordable, and accessible.
Housing Department Services
A variety of resource materials is used to locate potential housing
units for clients. The primary source consists of listings, published
Monday through Friday, of houses and apartments that become avail-
able. These listings include a brief description of each dwelling,
outlining the amount of rent and deposit required, the number of
bedrooms, location, and so on. Realty and management agencies are
regularly contacted for additional listings. Clients are encouraged to
notify the Housing Department if they or their friends move, thereby
passing along accessible housing. In addition, local colleges and uni-
versities are contacted for listings and also for prospective room-
mates. Finally, local newspapers and newsletters, neighborhood and
grocery store bulletin boards are checked systematically for rentals
as they become available.
The available units are then checked against a reference book,
compiled by CIL, which lists the area's apartments known to have
level or rampable entrances. This book was compiled by taking an
exterior visual survey when a building was listed as having a vacancy.
There has been no new construction of multiunit housing in Berkeley
for a number of years; much of Berkeley's housing stock consists of
buildings that have been adapted as apartments, thereby making door-
to-door surveys all the more difficult. At one point a University of
California architecture class led by Raymond Lifchez undertook such
a survey in the area near campus. Because of limited staff and re-
sources, however, the Housing Department has been unable to survey
Independent Living: The Right to Choose 257
other areas of the city. Only Hmited knowledge, therefore, is available
against which to check listings for accessibility.
In addition to listings of available dwelling units, CIL also keeps
an updated listing of people who are willing to share housing for a
variety of reasons. It may simply be necessary to keep rent costs
down and within a limited budget. Or perhaps a quadriplegic who
needs attendant care but cannot quite afford it would like to share
the costs and services of a personal care provider with another quad-
riplegic in like circumstances. Perhaps a blind person would like to
share an apartment with a sighted person disabled in some other
way. Being open to such arrangements can greatly maximize the
possibility of a disabled person's living in the community. CIL also
provides information on other alternative living situations such as
communes and co-operatives, with both able-bodied and disabled
persons.
Because most of our clients must live on a low, fixed income, we
attempt to find as many ways as possible to ease the financial burden
of the high-cost housing market. In addition to the roommate-referral
mentioned above, we also work closely with the housing authorities
in Oakland and Berkeley and Alameda County to assist clients in
getting Section 8 rent subsidies. (Califomians are fortunate to have a
program of "aftercare housing assistance" which subsidizes rents for
developmentally, mentally, or physically disabled persons who "are
capable of living semi-independently or independently" and who are
"financially unable to afford decent adequate housing within their
own resources" (State SB 49 — Federal Section 8.).
In the event that a residence is not accessible or usable by the
disabled client, in many cases it can be modified or adapted so that it
is habitable. We give technical assistance to people needing to make
modifications and help them secure funding for such barrier removal.
Funding for a project like this could come from a number of different
sources. For example, Medi-cal or other medical plans will pay for
much of the equipment and adaptions needed by the disabled person.
The Veterans Administration (VA) will do the same, and in the case of
service-connected veterans, they will give as much as $25,000 toward
the house itself. Special groups or agencies, such as the Multiple
Sclerosis (MS) Society or Catholic Family Services, and the local De-
partment of Vocational Rehabilitation may also be potential sources of
monies to remove architectural barriers. If private business is in-
volved, for example, if the modification will also make a private busi-
ness accessible, then that business can claim the modification as a tax
deduction. The law states that Family Services, the Easter Seal Soci-
ety, or the local Department of Vocational Rehabilitation may also be
258 A Call to Action
potential sources of monies to remove architectural barriers. The Wel-
fare Department may even be of help, as sometimes there are special
circumstantial funds or emergency loans for those who demonstrate
the need. Though the law does not require property owners to make
changes to their property for disabled renters, clients are not on their
own in paying for these modifications!
The Housing Department of CIL will also help the disabled
plan and execute these modifications. The housing counselor will
first carefully inventory the client's needs and the house's shortcom-
ings, and then assist him in deciding what changes must be made.
He will help the client sketch plans for these changes and estimate
the costs of these modifications. Finally, the housing counselor will
refer the disabled person to a reputable, experienced contractor.
Many of CIL's clients, because this is the first experience with
independent living, are ignorant of their rights and responsibilities
as tenants. Therefore, our staff provides them information on these
subjects and assists them in disputes they may have with their land-
lords. Clients should be familiar, for example, with the State of Cali-
fornia Civil Code regarding discrimination. They should also know
something about basic tenant/landlord relations. The staff of the
Housing Department will act as advocates for clients whenever they
may have problems in such tenant-landlord matters. The staff can
advise clients of their rights concerning such things as eviction, secu-
rity deposits, raising of rent, seeing-eye dogs, and the like. If clients
feel that they may have been discriminated against because of disa-
bility, they may first be counseled by the Housing Department and
then, if necessary, referred to CIL's Disability Law Resource Center
for further legal advice.
When a suitable living space has been located, the housing
counselor and client will evaluate its accessibility to the wider envi-
ronment from the dwelling unit. What public transportation will the
client use? Will he be able to get to it? Where will he shop? Will he
have access to recreational activities and the like? To address these
issues other departments of the CIL may be called upon, as the
client's concern turns from the housing unit itself to the broader
environment. Finally, the Housing Department will assist the dis-
abled person in making arrangements for moving.
All the services that have been described in this chapter are
delivered on an individual basis. When a client is referred to the
Housing Department, he is assigned to a housing counselor. This
counselor works with the client from start to finish — from referral to
moving in. Counselors may or may not be disabled (although over
one-half of our staff are disabled), but they must be able to counsel
Independent Living: The Right to Choose 259
clients in all the areas mentioned thus far. They must be familiar
with the city and also with rental policies and social service/funding
sources available to their clients.
Besides direct service delivery, CIL's Housing Department is
dedicated to the larger struggle of making the environment, espe-
cially in the area of dwelling units, more responsive to the needs of
the disabled and elderly populations. Therefore, the Housing De-
partment staff, especially the Housing Services Manager, works
regularly with other agencies, government authorities, and the City
of Berkeley, advising them of the housing needs of the disabled and
campaigning for increased housing and supportive programs.
Of course, it is not enough merely to help clients obtain adequate
living quarters. For many of our clients this would be useless to them
without attendant care or transportation arrangements. The Housing
Department is part of an integrated service delivery system that is
CIL. But examining how the Housing Department works illustrates
the basic values and goals of an ILP. Housing counselors are used as
consultants; they suggest, refer, offer information and skill, but never
make decisions for the client. The client is in control and chooses
what living arrangements he desires, rather than the counselor decid-
ing what would be best for him. With this model the client indeed
may make mistakes. He may enter an inappropriate living situation
and experience negative consequences as a result. He may fail. But as
was mentioned earlier, this is one of the definitions of independent
living: the right to make mistakes like everyone else. Examination of
the operations of the Housing Department also illustrates CIL's close
working relationship with the community. Every step of the way,
counselor and client are working with neighborhood groups, with
individual landlords, and with community organizations.
With the passage of the 1978 Amendments, the independent
living movement stands at a crossroads. Previously strictly a grass-
roots movement struggling to survive through the efforts of dedicated
and competent individuals, the movement has in effect become le-
gitimate. Whether this will help or harm it remains to be seen.
Whether substantial amounts of monies channelled through state de-
partments of vocational rehabilitation will actually help disabled
individuals achieve autonomy and independence is, as yet, an un-
answered question. The independent living movement could be-
come another bureaucracy, administered by professionals whose first
allegiance will be to funding sources and not to the client. It de-
pends on the determination of the disabled themselves to resist co-
optation and remember the meaning of the term "independent liv-
ing" if the original purpose of the movement is not to be subverted.
260 V A Call to Action
References
Center for Independent Living. An introduction to the Center for Indepen-
dent Living. Unpublished manuscript. Berkeley, Calif., 1979.
Cole, H. What's new about independent living? Archives of Physical Medi-
cine and Rehabilitation, 1979, 60, 458-62.
Dejong, G. Independent living: From social movement to analytic paradigm.
Archives of Physical Medicine and Rehabilitation, 1979, 60(10), 435-
446.
Laurie, G. Independent living programs. Rehabilitation Gazette/79, 1979,
22, 9-11.
18 Consumer Activists
Promoting Equal Access to
the Marketplace
Lilly Bruck
At the 1980 Annual Conference of the President's Committee on
Employment of the Handicapped, Curtis Brewer was honored as the
"Disabled Man of the Year." Mr. Brewer, paralyzed from the neck
down by a progressive disease that started in his late twenties, is
dependent in all the physical functions of life, including breathing.
After years of inactivity, he entered law school and, at age 45, passed
the bar. He is now a practicing lawyer specializing in disability
rights. Presenting the committee's award to Mr. Brewer, President
Carter paid verbal tribute to the honoree and then called on Mrs.
Brewer to receive the plaque for her husband.
Sometime later, CBS aired a brief documentary on Mr. Brewer's
life and accomplishments. At the program's conclusion, Mr. Brewer
made a statement. He related events surrounding the presentation of
the plaque and criticized the President, asking, "Why did he call on
my wife? It is I who got the award. I am a person. I was there. The
President should not have acted as if I was not present."
It took courage to voice this criticism on national television. The
President may not have known how to present a plaque to a man
who could not use his hands to accept it, but the man of the hour was
offended. Perhaps he felt like the paraplegic or blind diner in a
restaurant when the waiter addresses the able-bodied companion
with the question, "What does he want?"
There is a lesson to be learned from this vignette. Should not all
disabled people be encouraged to follow Mr. Brewer's example and
say, "Hey, I am here! I am a person. Count me in!" It was perhaps
Brewer's ability to do just this that explains in part his successful
entry into a world constructed for the able-bodied, an all-too-often
hostile environment which allows entrance only to those who can
tolerate the pain and have the strength and persistence to ask and,
sometimes, demand equal access, rights, and responsibilities.
261
262 A Call to Action
Purchasing Power of the Largest Minority
Every physically disabled person need not be as outstanding an indi-
vidual as Mr. Brewer, exhibiting his strength and courage in the fight
for equal rights in the community. Fortunately, by working together,
the disabled population can utilize already existing social and eco-
nomic forces to help them gain their rights. A good example of this is
found in the following statement announcing the recent opening of a
new casino in Atlantic City. It stated: "Twenty-nine slot machines
were specially adapted for the handicapped. Some are low, to be
accessible for guests in wheelchairs; others have symbols, such as
cherries or bells, brailled for identification by the blind."
What could be the cause of such consideration? Are gambling
casinos subsidized by federal funds, or was the management afraid it
would be accused of discrimination if all one-armed bandits were
inacessible? One reason alone probably motivated the casino
owners: profit. They simply acknowledge that the money of disabled
gamblers is not impaired, at least no more so than anybody else's in
this era of the shrinking dollar. Therefore, disabled visitors are made
comfortable and given equal access to that elusive pot of gold.
Why has it taken business so long to recognize 36 million handi-
capped Americans, the country's largest minority, as consumers? Un-
til recently they were largely ignored by the providers of goods and
services. The image of unproductive shut-ins, living on handouts from
relatives or society, did not project them as profitable customers.
As handicapped citizens are becoming a more visible part of the
American scene, business has become aware of the purchasing po-
tential of disabled consumers. It is up to the disabled themselves and
those who work with them to learn to use their strongest weapon,
their purchasing power. It is up to them to learn how to assert their
rights as consumers and demand accommodations from those who
want to sell them goods and services. The profit incentive will moti-
vate those making accommodations. Competition will continue the
momentum. Merchants will discover that an individual's disability
does not mean inability, either to function as a first-class citizen or to
be counted as a paying buyer of wares.
A Hostile Environment
Interestingly enough, astronauts can be viewed as handicapped
people. Yes, up there in space only the most sophisticated adapta-
tions permit them to function in a hostile environment: adaptations
Consumer Activists: Promoting Equal Access to the Marl<etplace 263
such as pressure suits, oxygen, food squeezed from tubes, chemical
waste disposals, and electronic communication devices. If such so-
phisticated technology were put at the disposal of people with physi-
cal impairments, they could become equal consumers in the cur-
rently hostile environment of the average marketplace.
The power to obtain this sophisticated technology and the
needed changes in business practices can come, in part, from the
consumers' movement. The 1960s are generally considered the dec-
ade in which consumerism blossomed and developed into the force
it has become. In 1962 President Kennedy identified four basic con-
sumer rights:
1. The right to choose — free competition, no price fixing, and
the opportunity to compare before buying.
2. The right to safety — flame-retardant fabrics, shatterproof
glass, nonharmful food additives, and tested drugs and medi-
cal devices.
3. The right to be informed — full disclosure about the products
we are about to purchase, content on labels on foods, care
labels on clothing, energy consumption of appliances, war-
ranties, and rates and conditions of credit.
4. The right to be heard — legitimate complaints about defective
or unsatisfactory goods and services and consumer input to
the deliberation of federal agencies when new regulations
are proposed and discussed.
Consumers with physical impairments ask themselves if this
Consumers' Bill of Rights really applies to them or if it was designed
with only the able-bodied in mind. How can it apply to them if the
store is inaccessible or when there may not be any federal, state, or
local standards for braces, wheelchairs, hearing aids, or optical de-
vices? How does the visually impaired consumer gain access to
printed information? How does one make himself heard if he cannot
communicate orally?
In 1975 President Ford added a fifth consumer right, the right to
consumer education. A right, not a privilege. But is consumer educa-
tion made available to disabled consumers of all ages? Have disabled
children received formal consumer education in institutions? Did
they gain the consumer practice their peers experienced when they
spent their allowances in neighborhood stores?
While President Carter was still a candidate for his office, a
suggestion to declare a Disabled Consumers' Bill of Rights was pro-
posed (Bruck, 1978) to include:
264 A Call to Action
The right to accessibility for the mobility impaired
The right to information for the visually impaired
The right to communication for the hearing impaired
The right to consideration for the mentally impaired
The right to consumer education
It is the need for this fifth right, the right to consumer education, on
which we focus in this chapter.
Rehabilitation professionals concerned with preparing their cli-
ents for gainful employment and independent living should realize
that teaching consumer skills must be a part of the preparation for
earning money and spending it wisely. Knowledge of the laws that
protect them in the marketplace enables consumers to assert their
rights as buyers of goods and services. Consumers with disabilities
must be assured that they, too, have equal rights and that they should
demand accommodations that will eliminate environmental barriers
which prohibit them from exercising their full rights as consumers.
The profit motive and competition will support their arguments.
Coincidentally, adaptations made to accommodate consumers
with disabilities will benefit many other customers as well. The in-
vention of the telephone, for example, resulted from an effort to assist
the hearing-impaired and opened communication for the world at
large. Although closed captions were developed specifically for the
hearing impaired, they also hold potential for those who are learning-
disabled, those with reading problems, and those learning English.
Ramps designed to accommodate those using wheelchairs also serve
other "wheelers," those pushing baby carriages, youngsters with tri-
cycles and bicycles, persons pushing shopping and delivery carts,
those using canes, crutches or walkers, and elderly citizens, many of
whom prefer gentle inclines to stairs. Disabled citizens are indeed not
alone in their need of a benevolent environment.
It's Not Kindness, It's Good Business
The following pages contain accounts of efforts made to gain accom-
modations and adaptations in private industry. To help clients and
colleagues make the community more accessible, these examples can
be described to them. They should be encouraged to quote them to
local suppliers, hotels, restaurants, and say: "If they could do it, why
don't you give it a try? We'll see to it that you get publicity among
groups of disabled residents and the local press. Besides, your action
Consumer Activists: Promoting Equal Access to the Marketplace 265
will not only create good will, you'll find it reflected in the bottom
line — profit. It's not kindness you are practicing; it's good business
to help the disabled become first-class citizens."
While clients are on their lobbying visits, they may find it useful
to cite some concrete information. For instance, that it costs 10 per
square foot to design a new building to be accessible, while it costs
130 per square foot to clean the floor. Businessmen willing to re-
move architectural barriers in their existing premises could be re-
minded that tax deductions of up to $25,000 per year are available to
them for their efforts.
The Electronic Billboard
Television, the electronic billboard, is designed to make us all super-
consumers. But has television discovered that disabled people exist
outside of telethons, where they are displayed as pitiful characters,
afflicted, imprisoned in defective bodies, conveying the message:
"Send money as a thanks-offering for your own perfection"? Thank-
fully, yes. Indeed, television programming has begun to discover
that many disabled persons live rich lives, as reflected in growing
numbers of televised broadcasts and specials.
But have commercials discovered that one out of nine of their
intended customers are members of America's largest minority?
Does a disabled model ever appear on a television screen selling
soap, toothpaste, soft drinks, food, or headache remedies? No, not
any more often than black models huckstered in the early 1960s. And
even when blacks first began to appear in commercials, they were
shown in group scenes, slightly out of focus and never, never touch-
ing the merchandise. Only now are commercials more accurately
reflecting blacks as a significant part of the consumer population.
A course titled "Consumer Education for and by Disabled Citi-
zens" was conducted in 1977-1978 under the auspices of the Ameri-
can Coalition of Citizens with Disabilities. The 48 visually, hearing,
or mobility impaired individuals participating in this course were
asked to write letters to executive officers of each of four major adver-
tisers selected: Bristol Myers, Proctor and Gamble, Best Foods, and
Revlon. Some of the questions posed by these students to the adver-
tisers included, "Because I am in a wheelchair, don't I brush my
teeth?" "Though I am hard of hearing, don't you want to take care of
my headaches?" "Don't children in wheelchairs eat Thomas's Muf-
fins?" "Does Miss Wheelchair America not use cosmetics?" All letters
received replies, because these conglomerates have good public rela-
266 \ A Call to Action
tions departments and they do care about their pubHc image. Of
course, all responses were similarly polite and noncommital. "Every-
body is beautiful; we do not differentiate." "We could be accused of
exploitation." "Modeling requires highly skilled professionals." Per-
haps the worst offender was Best Foods, who, in recognition of the
writers' efforts, patronizingly sent coupons for the next purchase of
Thomas's Muffins which were, incidentally, returned by the student
with the comment, "We disabled want equality, not charity."
Alone, no one can convince the multibillion dollar advertising
empire to include the disabled in their advertisements. But people
working together can, perhaps, begin to make an impact. If network
broadcasting cannot yet be moved to include the disabled in their
advertising campaign, where one minute on prime time can cost up
to $200,000, local advertisers can be approached.
An activism training program in a rehabilitation facility could be-
gin with organizing disabled clients to contact local merchants. Indi-
vidually, in pairs, or in groups, they could visit merchants, assuring
them that disabled consumers use the same goods as do the able-
bodied and pledging their business to those merchants who in their
advertising pay them the courtesy of recognizing their existence.
Response is the Key
Corporations, like individuals, appreciate the public's recognition of
their special efforts. When I complimented General Motors Corpora-
tion on having their 1978 Annual Report produced on tape for visu-
ally impaired stockholders, a member of their public relations staff
responded: "... I have shown your letter to the young lady on my
staff who conceived of and carried out this project. Often our individ-
ual efforts are lost . . . and your letter served to give proper credit
where it was due." At National Airlines, not only the president, to
whom the letter was addressed commending them on installation of
a telephone for the deaf (TTY), but also the director of their reserva-
tions systems and programs responded: "We at National are quite
proud of the opportunity to service Miami's deaf community, and the
initial response to our limited system has been enthusiastic. In fact,
we are already considering expansion of the service to a statewide
basis, and who knows what might come next."
Response . . . this is the key to the expansion of services. Not
only demands for accommodations by disabled consumers, but ap-
proval, in word and deed, when they are offered.
Consumer Activists: Promoting Equal Access to the Marketplace 267
To Market, to Market . . .
In preparation for a pamphlet, Consumer Rights for Disabled Citi-
zens (New York City, Department of Consumer Affairs, 1976), ques-
tionnaires were sent to airlines, banks, department stores, and food
markets. Questions were asked about the width of doors and aisles,
the accessibility of dressing rooms and restrooms, how information
was disseminated to the visually impaired, the nature of orientation,
and available acommodations.
Responses were received from seven of the 10 airlines, two of
the 10 banks, five of the 19 department stores, and eight of the 26
food markets. The returned questionnaires were summarized and
published together with the name of the responders. An adjoining
column listed those not responding.
The enthusiastic reception of this book, locally and nationally,
led to four reprinted editions within a few months. With every subse-
quent edition, the list of responders lengthened, while the list of
nonresponders shrank. Undelivered or misplaced questionnaires,
misunderstandings by staff, and missed deadlines for returning ques-
tionnaires were often used as excuses by those not responding,
while management must have rubbed their eyes in wonderment that
disabled consumers should actually be recognized and accommo-
dated as customers. The questionnaires were reprinted in the pam-
phlet, accompanied by the statement: "It will be up to the disabled
community to effect changes, to demand accommodations, and to
vote with their shopping dollars for those merchants who cooperate,
giving consumers with disabilities equal access to their services."
Armchair Shopping
For disabled consumers, shopping by mail or telephone may be the
preferred method and the great equalizer. It makes disabled and
nondisabled consumers not only equal customers but also equal vic-
tims of fraudulent practices. In 1978, $30 billion of merchandise was
ordered from catalogs, brochures, and other mail promotions. Eight-
een percent of all general merchandise sold in the country was sold
by 10,000 mail-order houses, with Sears and Roebuck spending $125
million on printing their catalogs alone.
Unfortunately, the mail-order business also gives rise to some
unethical practices. Mail orders are among the most often cited
sources of all consumer complaints, even when no fraud is involved.
268 A Call to Action
Moreover, in 1977 an estimated $1.8 billion was lost to mail fraud.
The most vicious frauds are perpetrated by quacks offering miracle
cures, sure-fire medicines, or beauty aids to gullible victims.
Overselling by high-pressure salespeople can be controlled, pro-
vided consumers are knowledgable of the laws that protect their rights
as mail-order and direct-selling customers. The Federal Trade Com-
mission will gladly provide consumers v/ith free publications explain-
ing in easy language what the cautious consumer should know.
To help those persons who shop by telephone, the telephone
company's classified directory occasionally displays the international
symbol of accessibility in some restaurant, store, and theater adver-
tisements. The American Telephone Company suggested this inno-
vation to all salespeople of space in classified telephone directories
so that consumers in wheelchairs could identify not only where they
were admitted but welcomed as customers. Both the disabled popu-
lation and business community would be well served if all advertise-
ments carried such designations. It would make it easier for the
consumer to identify accessible businesses. It could also increase the
trade in stores which are designated as being able to accommodate
the disabled consumer.
Check that Checkout
The character in the cartoon may not have chosen the best way to
gain accessibility to the food store. Perhaps he did not understand
the distinction between aggression and assertion that all disabled
shoppers must practice if they want to spend their money wisely and
get the best value for their shopping dollar.
Shopping in the food market, being a repetitive chore, ranks
among the most frustrating consumer experiences for those with im-
pairments. Here deafness may be the least important inconvenience,
since self-service demands little verbal communication with sales
help. One recommendation to store owners which can help accom-
modate the hearing-impaired consumer is to request that those work-
ing counter areas that issue numbers, such as a deli or a bakery, flip
these numbers as well as call them out; otherwise a deaf customer
may patiently wait for 83 to be called, while 85 and 86 are already
being served. This is simply one small accommodation, requiring no
cash investment by the store, which can be quickly and effectively
implemented.
Problems of the visually impaired consumer are more difficult to
overcome. Blind customers are not only deprived of money-saving
Consumer Activists: Promoting Equal Access to the Marketplace 269
'I widened your doorway so that It could
accommodate my wheelchair!"
coupons found in newspaper advertisement and store flyers, but also
of the wealth of printed content and use of information found on
packages of merchandise. It would be unrealistic to expect brailled
labels on canned foods, cleaning supplies, or unit-price shelf stickers.
Yet the visually impaired consumer can find ways of sharing the ben-
efits offered the able-bodied consumer. For example, arrangements
can be made with the local branch manager of a supermarket chain to
be assisted by a helper at mid-week off-peak hours. Eunice Fiorito, a
blind activist, found herself poorly treated in her neighborhood food
market. She switched to a nearby competitor where arrangements
were made for a store clerk to help with her weekly shopping. A few
weeks later, she met the manager of the inhospitable store. "I
Cartoons on this page and on following pages are reprinted with permission of
Raymond Cheever (Ed.), Laugh with Accent. Bloomington, 111., Accent Special Publi-
cation, 1975.
270 \ A Call to Action
haven't seen you lately," he commented, "Where have you been?"
Eunice replied, "You didn't seem to care for me as a customer so I
took my business to another store where it is welcomed and I get the
service I need."
Mobility-impaired shoppers encounter their major problem at en-
try and exit. These difficulties are caused by such barriers as heavy
manual doors, often located at the store's entrance, and protruding
floor posts at the exit. Such impediments were originally installed to
prevent loss of shopping carts but are now illegal as fire hazards.
Again, to prevent loss of costly carts, narrow checkout lanes in most
inner city stores prevent customers in wheelchairs from passing
through the lane and observing the checker ringing-up purchases.
In New York City an incident had far-reaching, positive conse-
quences in correcting this situation. Betty Fumess, Consumer Affairs
Director for NBC, sent her "Action 4" crew to a downtown food
market. Illustrating her shopping problems was a vociferous disabled
consumer. She complained that she was unable to watch the checker
ringing-up her purchases because the lane was too narrow to accom-
modate her wheelchair. Arriving at the store on the morning of the
television filming, one lane, under a handwritten sign reading "This
checkout lane for the handicapped," had been widened. Questioned,
the manager replied, "We knew you were coming with the television
cameras. My back still hurts from moving the counter this morning."
A telephone call to the president of the company elicited the prom-
ise that the improvement would remain permanently under a profes-
sionally produced symbol of accessibility. Not only would the wid-
ened lane remain in place in that particular store, but widened lanes
would be installed to accommodate wheelchairs in many other
branches of the chain. Soon competition took its course, and now
other chains have followed their lead.
This tactic can be used effectively in other locales. Clients can be
encouraged to contact a local television crew and repeat this scenario.
It would not only make more stores accessible and generate positive
publicity for their facility, but it would also enhance the handi-
capped's self-esteem and sense of control over their environment.
Friendly Skies and Assorted Welcome Mats
The current upswing in travel by handicapped individuals and
groups has altered the attitudes and appearance of the hotel and
public transportation industries. Highly competitive airline compa-
nies have recognized that many disabled travelers can become their
passengers. This has caused them to change their previous prohibi-
Consumer Activists: Promoting Equal Access to the Marketplace
271
"I suppose the hardest part to accept is
the not being able to get around!"
tive restrictions to actively soliciting disabled consumers with ac-
commodations and services. Access Travel: Airports (available from
the Consumer Information Center, Pueblo, Colorado 81002) de-
scribes design features, facilities, and services at 220 airport termi-
nals in 27 countries that are accessible to the handicapped.
The Washington Metro, San Francisco's BART, Amtrak, and
some private bus companies are among several transportation sys-
tems striving to construct accessible facilities for disabled travelers.
Several offer free passage or considerable discounts for companions
of handicapped passengers.
Increasing numbers of hotels and motels are making their lob-
bies, dining rooms, restrooms, and a percentage of guest rooms archi-
tecturally accessible. For example, the Washington Hilton has avail-
able accessible public and guest rooms, raised table tops for the
comfort of wheelchair guests in the coffee shop, low-mounted public
and house phones with sound amplification, brailled menus, and
brailled elevator buttons. The Century Plaza Hotel in Los Angeles
welcomes blind guests with sets of brailled menus. Raised floor
plans of the guest rooms, indicating location of doors, closet, furni-
ture, and telephone are also available to the visually impaired guest.
Although accommodations for deaf guests are not available in
even these hospitable inns, their needs could be met by making the
following accommodations: provision of room phones that have vis-
272 \ A Call to Action
ual page systems, so that a guest could be notified by the front desk;
a portable TTY for the guest's room to call friends and family and
another at the front desk or in the assistant manager's office so deaf
guests can call for services available to other guests, such as room
service or valet; bed vibrators for wake-up calls; and flashing fire
alarm warnings to alert deaf guests while alarm bells notify others to
vacate the premises.
At Your Service
"I entered so many restaurants through their kitchens," stated Max
Cleland, former director of the vast Veterans Administration bureau-
cracy, "that people thought I was a food inspector." Being ushered
into an eatery past garbage cans and clutter while one's dinner com-
panions walk up carpeted steps at the front entrance is not and
should not be tolerated as "equal access." In New York City not only
do several posh restaurants offer brailled menus but some fast food
chains also do. Several McDonald locations have menus brailled in
metal on the counters. Accessible tables with fixed chairs removed
are indicated by the international accessibility sign overhead.
Equal hospitality is extended to blind guests' guide dogs at
these restaurants, which is not the case at all eating places. Although
the law states that guide dogs may accompany their masters wher-
ever they go, on public carriers, in airports, post offices, stores, and
banks, some restaurants still refuse admittance even to those privi-
leged canines. Blind activists often make it a point to insist, quoting
the law. Faced with continued resistance, they ask that the owner of
the restaurant call a policeman, not, as some owners hope, to obtain
assistance with barring the dog, but rather to enforce the law.
Your Friendly Banlcer — How Friendly is He or Siie?
In the previously quoted responses to accessibility questionnaires
distributed by the New York City Department of Consumer Affairs,
banks were shown to be the poorest responders — two out of ten.
Conceivably this could be interpreted as reflecting little interest by
banks in acquiring disabled customers. With all the wooing banks
do, offering gifts to new depositors and praising their friendly ser-
vices, only one bank in New York City makes any provision for their
disabled depositors. Chemical Bank prepares statements in braille
and furnishes checks with raised lines for blind and visually im-
paired clients.
Consumer Activists: Promoting Equal Access to the Marl<etplace
273
■vLCRjcrr
^S.*Su2-
If disabled clients are not courted to become depositors, how
welcome are they as borrowers? Does a disabled applicant for a loan
receive consideration equal to that of his nondisabled neighbor? What
is the disabled community's share of the almost$l. 2 trillion consumers
owe on their homes, $280 billion of installment debt, and $64 billion in
charge credit? Is credit, the motor that drives our economy and the key
that makes possible full participation in the benefits of our society,
denied to physically handicapped citizens? Theoretically, only the
ability and willingness to repay a loan or pay for items charged or
purchased on installments should determine the applicant's credit-
worthiness. Application for loans by lending institutions are evaluated
by point scores, with some criteria including place and length of em-
ployment, length of residence at the same address, and listing in the
telephone directory. According to the Equal Credit Opportunity Act,
age, sex, marital status, nation of origin, or receipt of public assistance
may not be considered. The law does not prohibit discrimination be-
cause of physical handicap. The human factor, however, enters into the
granting of a loan in the form of the loan officer's personal judgment.
Whether applicants in wheelchairs, walking with canes, or accompa-
274 \ A Call to Action
nied by guide dogs or sign language interpreters will receive the same
objective evaluation must be carefully considered.
It is important for disabled consumers to become aware of their
rights in the credit market and the laws that protect them. In case of
rejection of a loan application, the Fair Credit Reporting Act requires
that the lender state the reasons for the rejection. This act also guar-
antees the would-be borrower's right to investigate them. Disability
is not one of the legitimately acceptable reasons for denial of a loan.
All facts of the "Truth in Lending" law are described in clear lan-
guage and are free for the asking from the Federal Trade Commis-
sion's Consumer Protection Bureau.
Be Sure of Your Insurance
In research for Bruck's book Access (1978), people who worked in
sales and in administration of major insurance companies were inter-
viewed. The results can be summarized thusly: "You won't find any
exclusionary clauses in any manuals. But neither will you find an
executive of an insurance company who will swear on a stack of
bibles that discrimination does not exist."
In the preceding section we have seen that the rejected loan
applicant has the right to be informed of the reason for denial. In a
recent court case brought by a rejected applicant for life insurance, the
defending insurance company's counsel admitted that insurance has
been denied because the applicant was gay. "Did actuary tables exist
proving that homosexuals had shorter life spans?" asked the plaintiffs
attorney. "No," was the response, "but gays have the tendency to
hang out in bars where brawls ensue and they can get killed." It is
interesting to note that the rejected disabled applicant had to go to
court to determine the "scientific" reason for his denial while, if de-
nied credit, the law would have given him the right to demand disclo-
sure. A similar law is now being considered for the insurance industry
and should be vigorously supported by consumers. Given the enor-
mous wealth and lobbying power of the insurance industry, such a law
will not be passed easily. But, then, the banking industry was not
enthusiastic about the Truth in Lending Law, either.
At present, disabled applicants for life insurance have to be their
own consumer advocates. Comparison shopping among various com-
panies and careful study of terms must precede the purchase. Again,
help is offered in the form of publications written in popular lan-
guage, many of them produced and distributed free of charge by the
government and by insurance companies.
Consumer Activists: Promoting Equal Access to the Marketplace 275
Discrimination is also practiced by those selling automobile in-
surance. Though disabled drivers have statistically equal or better
safe driving records than do the able-bodied, they are frequently
assigned to risk categories that carry with them the highest premi-
ums. Here again, assertion, comparison shopping, and assistance
from local consumer agencies, legal aid consultants, or human rights
offices may help the disabled driver to pay the already high rates for
automobile insurance charged to all motorists, without having them
additionally inflated by discrimination.
Equality for disabled consumers will not be given freely or
easily. It can, however, be achieved if disabled individuals recognize
that they possess "consumer power." Like other constituencies, they
have the ability to exert pressure and to influence the political and
economic decision-making processes that affect them. Equality as
citizens can be legislated; equality as consumers must be acquired
through the exercise of this consumer power. It is the rehabilitation
practitioner's responsibility to teach their disabled clients how to
gain access to this untapped reservoir of power in order to obtain
their full and equal rights as consumers.
References
Bruck, L. Access, the guide to a better life for disabled Americans. New
York: Random House, 1978.
Consumers' Union, Talking book, RC 12104. Library of Congress, DBPH.
19 Social Crisis and the
Future of the Disabled
Elliott A. Krause
There's a chill in the air as I write this, in October of 1979, here in
New England. Part of the chill is autumn, of course. Certainly the
leaves are putting on their usual spectacular show. But this year the
oncoming winter has another dimension — a political one. If there
were ever a winter of our discontent — all over the nation — this will
be the one. The big squeeze — wages not keeping up with prices, a
powerful and utterly shameless energy industry grinding the wheels
of inflation (with us between them) and an apparently powerless
federal government standing by and wringing its hands — all are lead-
ing to a social, society-wide crisis, for all but the independently
wealthy. Yet we are not dealing with blind forces of nature here — we
are dealing with willful greed by large corporations and a prostrate,
unorganized citizenry, with systematically unrepresentative institu-
tions. And if things are getting this bad for most of us, it is clear that
the disabled are bound to suffer even more.
I would like to begin by sketching a broad sociological and po-
litical-economic overview of the crisis, using a variety of theories
developed precisely for this purpose — modem Marxian theory on the
role of the state in advanced capitalist societies, especially in times
of so-called "fiscal-budgetary crises" in the area of human services.
Then I can relate the theoretical insights of this view to three key
areas: the production of disabled individuals, the state's official defi-
nitions of disability, and the ideologies presently governing the pro-
cess of rehabilitating, or not rehabilitating, broad classes of our
people. I can then conclude by presenting some strategies for action
to change the situation.
The Nature of the Social Crisis
When capitalism first appeared on the scene, in the trading cities
such as Venice or Florence or in the Hanseatic League on the North
Sea, it brought with it much social change and chaos. The hierarchi-
276
Social Crisis and the Future of the Disabled 277
cal order of the Middle Ages gave way, and the authority of the
church was challenged by a new rising merchant class. In place of
the concept of the subject under a king whose divine right to rule
was provided by the Pope, we saw instead the rise of individualism
and the fall of a moral order. Everyone in his place, the feudal order
of caste with mutual protection up and down, was replaced by the
new message, everyone for himself (Ullmann, 1966). The brutality
and criminality of the first merchant princes of capitalism had
another side, of course, for they created the conditions which freed
men's minds for science and art, for the Renaissance (Von Martin,
1963). In fact, the great painters were often permanent houseguests
in the great houses of merchants such as the Medici, and art flour-
ished at least in part to present a positive public image for the new
princes.
As capitalism rose, the feudal order fell, for it was powered with
the strong backs of the serf or peasant class. When these people fled
to the city or were driven off the land by new laws passed because of
capitalistic power, they left the lords of the manor high and dry, with
no one to work their land. For these lords no labor force meant
declining power and wealth, while power and wealth was at the
same time increasing for the new factory-owning class. By the early
1800s in Europe and England and by 1840 in the north of the United
States, capitalists were increasingly the political power of the nation.
Karl Marx began his work at this time. Two basic observations he
made are critical to the approach used in this paper. The first was
that history is a succession of class struggles, with in each age a small
and well-organized oppressing class exploiting a weak, large, and
unorganized class that does not own the productive process and is
therefore not in a position to set their wages or working conditions
(Marx, 1977). His second observation was that, in the early capitalism
of his day, "The state is the executive organ of the bourgeoisie"
(Marx, 1963). Or in other words, the capitalist class proposes; the
state takes its orders and disposes. But those were simpler times.
Modem Marxian theory, especially as it deals with the role of
the state in advanced capitalism, has taken the basic theory and ob-
servations of Marx and updated his theory to make it more relevant
to today's more complex relationships between the state, capitalist
sectors, the working class, and other segments of our society. This
updated theory is widely in use today in the West and should not be
confused with the dogmatic pronouncements of Lenin and the secu-
lar religion known as "Marxism-Leninism" in Eastern Europe (An-
derson, 1976). Serious scholars such as Poulantzas (1975, 1978) in
France, Miliband (1969) in England, and O'Connor (1973) and
278 ^ A Call to Action
Wright (1978) in the United States are proceeding in an objective
and interdisciplinary manner. With historical, political, economic,
and sociological data and a knowledge of social systems they are
doing pioneering work on the how and why of social crises in the
West. They are particularly concerned with the role of the state (de-
fined as all organs of public government at all levels) in advanced
capitalism. Within this concern, they are even more interested in the
role of the state in times of "fiscal crisis" or budgetary cutbacks,
especially as this concerns human services and health protection for
the population.
For example, Mandel (1975) has shown that capitalism itself has
gone through phases, from early merchant prince or sailing ship capi-
talism, to early industrial capitalism, to the early monopoly-building
robber baron capitalism of the 1880-1910 period, to monopoly capi-
talism with large near-monopoly or oligopoly sectors (energy for ex-
ample) with a much less powerful medium to small business sector.
Finally, in the post World War II era, in both the United States and
Europe, we are approaching a new era, that of state capitalism,
where the top 1000 corporations work jointly with national chief
executives and plan the future economic policy, bank lending rates,
degree of unemployment, degree to which government regulations
will be supported or relaxed, and most important here, whether the
funding for the human services sector will be added to, left alone, or
cut back. In his recent analysis Gough (1979) shows this growing
interconnection between corporate sectors and the state, with the
need to cut back on services if profits in the private side of the
arrangement begin to become affected:
In the real world the final burden of taxation is determined by the ebb
and flow of class conflict, and will vary with the economic and political
strength of the contending classes. Simultaneously, the scale and direc-
tion of state expenditure, including that on the social services, is also
largely influenced by the class balance of forces. (Gough, 1979, pp.
126-127)
Gough goes on to note that one outcome of the conflict is inflation
and social instability. He notes that the public human service sector
is even there at all only because workers and their representatives
struggled to place it there. But once there it constitutes a drain on
profits. In good times corporate capitalism can afford to fund it, but
in bad times cutbacks must occur. But those cutbacks, by their na-
ture, take things away from people who have become used to getting
them as a normal part of life, for example, good public schools,
health care, rehabilitation services:
Social Crisis and the Future of the Disabled 279
The ever-growing level of state impositions and welfare expenditures
exacerbates the conflict between capital and labor in the economic,
political, and ideological spheres. The combination of upward pressures
on welfare spending and problems of financing it result in what
O'Connor (1973) refers to as "the fiscal crisis of the state." But this can
only be understood as one moment in the present economic crisis,
brought about by the very nature of capitalist growth and development.
(Gough, 1979, p. 127)
Now we come to the budgetary or fiscal crisis itself. Workers
who struggle and who even partly succeed in getting wages pushed
up force corporations to economize elsewhere — and they choose
their tax burden, especially that part of it that goes for public services
and welfare. The cost accountants within the state are then given
near-supreme power — cut everything you can.
Economic and employment policy, as well as long-term fiscal
and monetary policy, is part of this struggle. Production costs to
many sectors, because of labor and energy requirements, push infla-
tion up, and then the technique of choice is to recommend more
unemployment and raise interest rates — which take even more
money out of the hands of the middle and working class while cut-
ting back on money for services to them and to the poor. The crisis is
now reaching the point where the middle class is becoming prole-
tarianized, in Marxian terms, or pushed down into the bare subsis-
tence struggle that has always characterized the life of the industrial
working class. This is the social crisis upon us — the crisis is business
as usual within an advanced capitalist nation, with the centralization
of power in the corporate sectors leading to more pushing, not less.
External factors then squeeze the corporations, leading to further
increases in the squeeze on us. This war against the middle and
working class, in addition to the usual war against the poor and the
disabled, is the social dynamic that characterizes the present era. It
is heating up with passage of time, not cooling down. And the dy-
namics of the crisis directly affect three areas directly relevant to the
concerns of workers with the disabled: the creation of disability, the
official definition of disability, and the rehabilitation process itself. It
is to each of these areas that we now turn.
Capitalism, State Controls, and the Production of Disability
In the first place, the sources of disability are closely related to the
extent of the struggle underway, and the sources have effects that are
more marked than usual in times of social crisis. Five areas can be
280 ^ A Call to Action
briefly considered: occupational disease of a physical nature, the
psychosomatic and mental illnesses related to stress, the incapacita-
tion caused by highway accidents, the disease and handicapping of
children, and the chronic illness of those out of work and staying at
home. This is by no means an exhaustive list, but it will begin to
illustrate the dynamics of the system as it normally functions to pro-
duce— to manufacture — disability.
We can begin with OS HA, the Occupational Safety and Health
Administration. Though activists working within the labor movement
worked for more than 50 years to get protective laws on the books, it
was not until 1970 that President Nixon signed the OSHA act into
law. Then, with the utmost cynicism and in a series of steps carefully
described by Page and O'Brien (1973), he fired half of the already
existing occupational health and safety inspectors in the federal gov-
ernment. He used his executive authority to reallocate back to the
states (who were almost powerless against large industry in their
areas) the regulatory power granted to the federal government by the
new law setting OSHA up. He let it be known to all major industries
that he had no intention of pushing ahead on the act with any real
speed. The Public Health Service estimates that 390,000 new cases
of occupational disease appear annually. Ashford (1976) notes that
epidemiological analyses of excess mortality among workers in sev-
eral industries suggest that as many as 100,000 deaths occur each
year as a result of occupational disease.
The philosophy of nonenforcement of safety regulations has a
clear economic payoff in many industries — that of saving the money
the often expensive antipollution equipment would cost, were the
state to force them to buy it to protect workers. Labor leaders pushed
to get OSHA passed in 1970 and have continually spoken since then
about the need to actually implement it. But,
In the five years since the OSHA Act was passed, the labor movement,
spearheaded by the AFL-CIO and its Industrial Union Department
(lUD), has become increasingly disillusioned with the implementation
of the Act and the government's inadequate commitment to protecting
worker health. . . . The lUD has strongly opposed state takeover of oc-
cupational health and safety, on-site consultation, and the low funding
and manpower provided both OSHA and NIOSH. (Ashford, 1976,
p. 27)
What must be understood in terms of our model is that this kind of
nonfunctioning of the state regulatory apparatus is business as usual
under advanced capitalism. The function of OSHA is as much ideo-
logical as real, for it serves to show consumers that the government
Social Crisis and the Future of the Disabled 281
and the corporations care, whereas in practice they don't. The very
first regulatory agency, the ICC (Interstate Commerce Commission),
had the same problems; Jay Gould suggested that the federal govern-
ment set it up so that he could stock it with his own men. Given the
functional constraints on the state in advanced capitalism — that is, not
to hurt the capitalist class even in a conflict of interest situation with
worker health — it should be no surprise to note that performance of
OSHA under Ford and Carter has not changed from that under Nixon.
Carter's peanut processing plant in Plains, years ago, was not exactly a
model of worker health. But even if in the White House he were to get
converted, or reborn if you will, to the cause of safety in the work-
place, the constraints of "the economy" would prevent him from act-
ing significantly. Califano, incidentally, began to try — and his fate was
related in part to his attempt in this area.
In the 1980s the fiscal crisis ideology will provide an excuse for
further cutbacks, as will any real turn toward recession. Workers are
told, and sadly believe, that the only choices they have are a job with
a risk of cancer or no job at all. Meanwhile, the right-wing antiregula-
tion ideology in Washington, emanating from such conservative
think tanks as the American Enterprise Institute, offers a "scientific"
justification for cutting back on regulation — it is necessary to save
American business. It is also necessary, according to this reasoning,
for the carnage to continue.
A second area of disability creation lies in the area of pressure to
produce. Two classic signs are speedup on the assembly line and
pressure for a reduced work force to produce at the same level and
speed as the full work force that used to be there. Note that produc-
tion pressure takes its toll. From the time of Marx's first writings on
alienation (1963) concerning the psychic and economic costs paid by
those on the line, to the most recent epidemiological work by such
workers as Eyer (1977) on the social epidemiology of hypertension,
the dynamics are the same. People are not machines. When pushed
to behave as such, they break into alcoholism, addiction to tranquil-
izers, neurotic conflict, wife and child beating, and, according to
some studies, psychosis as well (Rosen, Locke, Goldberg, & Babi-
gian, 1970). Again, in the service of profit of those who own and
control the workplace, the disability is produced. The social crisis of
inflation, recession, and cutback in service will provide these owners
with a rationale for cranking up the pressure and a fiscal excuse for
refusing to treat the mental and spiritual wreckage the speedup will
produce. The excuse will be that there's no more money to help
them — given the budgetary crisis and the need to keep profits up.
A third area of disability production lies in the area of automo-
282 \ A Call to Action
bile safety. Traumatic injury in accidents, leading to many spinal
cord injuries as well as other partial and total disabilities, can often
be prevented. But to do so would require the passage of new laws,
new engineering mechanisms (such as passive restraint systems like
the air bag), and new costs to industry. In a time of social crisis and
recession, with sales declining, the automobile production sector of
the capitalist class says to the state — make us do this and we'll have
to raise the price. We won't eat the development and production
costs, and raising the price in this market will mean we will sell
fewer cars. You must not make us do this, they say, for our economy
must be protected along with the jobs of auto workers. The Congress
stays its hand; the executive branch counsels patience to consumer
activists; the carnage continues on the highways as it does in the
factories. And the physical medicine and rehabilitation world gets
another set of paralyzed clients to work with. Again, the social crisis
provides a convenient ideological justification for total retreat in this
area, an area where any progress at all was made only after years of
struggle against the power of the auto industry.
Finally, there are the lower visibility areas of disability produc-
tion relating to the home and the natural environment. Welfare pay-
ments stay at near-starvation levels while the cost of food and energy
rise through the ceiling. The state — and the corporations working in
tandem with it — pleads poverty and cost-effectiveness. The so-called
middle class is set politically against the poor, for the middle class
are told that they (not the corporations, of course) will pay the money
for any additional support for the poor and disabled. The conse-
quence is the chronic and increasing malnutrition of the poor, with
its direct toll in chronic respiratory disease and insufficiently fed
pregnant mothers and consequent retardation of a new generation of
infants. Also here we have the fixed-income retired and elderly,
whose choice is now increasingly between insufficient food or insuf-
ficient heat. In the winter of 1979, and unless something drastic is
done, in all the winters to come, they will pay the price of the social
crisis. At the same time, the banks are not going to give away the
extra interest dollars they get, nor will the oil industry. Thus for the
segments of the population we have been considering, the class
struggle is a simple struggle for survival. Unless something is done
soon, they will lose it, first through increased incidence of new disa-
bility and aggravation of existing chronic disability, and then in
upswing in the death rate.
To sum up, the four areas of physical occupational health, men-
tal health, auto safety, and provision for the poor and retired all
illustrate in different ways how the social crisis has strong conse-
Social Crisis and the Future of the Disabled 283
quences in terms of increased production of disability. But for "disa-
bility" to exist officially, to the point where the disabled can get
help, their disability must be officially recognized by the state. It is
to this aspect of the crisis that we now must turn.
Cutbacks and the Definition of Disabiiity
While an individual's own subjective and psychological definition of
disability is critically important in understanding the progress of that
individual in the rehabilitation process, others do defining as well.
And these other definitions are more fateful, more consequential, for
they determine whether there is going to be a rehabilitation process
in the first place. Three main types of definitions may be distin-
guished: the medical, the sociological, and the legal. With each step
from the first to the third, the dynamics of the social crisis come
increasingly into play and affect the consequences of the definition
process. After discussing these definitions and relating them to the
social crisis, we can take up the politics of disability definition in the
1973 Rehabilitation Act, the political economy of Workmen's Com-
pensation definitions, and the deinstitutionalization crisis in mental
health. Each issue in its own way bears the marks of the present
social crisis.
Disability definition can be considered from many points of
view. Here we are particularly concerned with what the definition of
disability refers to. Medical definition, made by physicians or physi-
cian extenders, refers to the abstract degree of physical or mental
health of the defined individual, with the medical profession doing
the defining. Capacity to function is the criterion there. Pure medical
definitions are rare, of course. They are usually mixed, in real-world
cases, with sociological role definitions, in which the capacity to
perform a role is the issue. For example, two people with paralysis
from the waist down (medical definition of disability) are given two
different degrees of role disability for the first is a college professor,
who can work and lecture sitting down, while the second is a steel
worker who will need an entire new occupation to hold a job. Fi-
nally, there are legal definitions of disability — the law of a given
state or nation, which takes medical definitions, or medical and so-
cial role definitions of disability made by experts in medical and
vocational rehabilitation, and then says: you qualify as disabled in
our program, and therefore our state program will provide the funds
for your support or your training and placement in a new job.
The progression from medical definitions through social role
284 \ A Call to Action
definitions into legal support definitions is a progression at the same
time from science to politics. Social role definitions involve what
state a society's labor market is in, whereas legal definitions are the
outcome of political struggles to provide or to not provide laws and
state programs and funds for the disabled. Thus to the extent a soci-
ety is in social crisis, the labor market will tighten and throw more of
the medically disabled into the social role category of unemployable,
given the competition. And the greater the crisis, the less likely it is
that the state will even maintain the status quo in terms of allowing
official legal definitions of disability to go unchallenged and un-
changed. The greater the crisis, the tighter the money for programs
and the stronger the pressure on those bureaucrats in a position to
make the legal definitions and thus cost the state money.
One primary example of this lies in that area of legal decision
making involving the use of medical and social role data that we call
Workmen's Compensation decision making. As the cost of living has
risen, Workmen's Compensation systems have not risen in their pay-
ments for injury, even with the rate of inflation, nor has the nation
developed one overall federal system. According to the National
Commission on State Workmen's Compensation Laws (1972), the
payment system is grossly inadequate; it continues the adversary
relationship between employer and employee through quasi-judicial
proceedings with lawyers on both sides; and it often denies benefits
for arbitrary reasons. Need I note that the corporate sector fights
against any major reform of the system, especially increased benefits
which might come out of their pocket?
When I last wrote on this issue (Krause, 1976), it already appeared
as if the governmental appeals system — the administrative law
judges — were getting pressured to quit reversing appeals by workers
whose Workmen's Compensation benefits had been denied further
down the line. When the ideology of "fiscal crisis" and "bankruptcy of
the Social Security system" was spread, and federal policymakers
chose to push up the rates and percents of Social Security income,
they also chose to lean on the administrative law judges in the Social
Security Administration, Bureau of Hearings and Appeals. Howard
Grossman, a highly respected administrative law judge who works in
this area, wrote the following article which carried the subhead "The
Planned Ending of Impartial Disability Adjudication":
The bankruptcy crisis set the stage for an attack upon the administrative
law judges' "reversal rate," i.e., the percentage of state agency denials
which are "reversed" by administrative law judges and changed to allow-
ances of benefits. Thus began the attack upon due process of law and
Social Crisis and the Future of the Disabled 285
upon fair hearings for the country's most vulnerable citizens, the handi-
capped and the disabled, the aged and the blind. (Grossman, 1979,
p. 45)
Specifically, the Workmen's Compensation system is jointly
funded in most states between industry and government or, to use
the terminology of modem Marxian theory, between sectors of the
capitalist class and the state apparatus. To protect profit margins by
keeping expenses under control, a limit is set on the total size of the
award an agency such as SSA can award. If expenses rise or demands
increase, the state machinery must stand firm. If political organiza-
tions of the working class are too weak, or if the public can be
convinced that cutbacks are necessary to save "the economy" (whose
economy?), then positive cutbacks — going beyond level funding —
can occur. Even Congressional Investigation Committees found that
the pressure on judges within SSA had escalated, from the mid-1970s
on. The judge shows how this worked:
Differences between the Bureau of Hearings and Appeals . . . and the
ALJ's escalated beginning in 1975, with the appointment of a new Bu-
reau Director. "Management techniques" were instituted with the al-
leged purpose of reducing a "backlog" of cases, and ALJ's were as-
signed production quotas. A large number of grievances and lawsuits
were filed by ALJ's against the Bureau Director and other management
officials, based on various allegations of mismanagement and capricious
exercise of authority. Class actions were filed by claimants alleging
denial of due process of law because of managerial interference in the
decisional process. (Grossman, 1979, p. 45)
The Bureau of Hearings and Appeals responded to the protest of the
judges by trying to fire them en masse. In addition:
The medical advisory staff was drastically reduced in size, and the
"managers" were assigned the task of making medical judgments. BHA
contracted with a former BHA management official to study the entire
problem: his report was highly critical of the new "management initia-
tives" and bureau reorganization. (Grossman, 1979, p. 45)
The judges won the short-run battle. But Grossman goes on to note
that new legislation is being proposed that will let nonjudicial
agency employees screen all appeals before they get to the adminis-
trative law judges. This legislation is being proposed not just in
Workmen's Compensation cases but also for cases of welfare cut-off
and other areas as well. This is precisely the mechanism that I sug-
286 ' A Call to Action
gest characterizes the functioning of the state in this area in ad-
vanced capitalism, especially in a recession period. If one technique
for denial of service doesn't work, change the mechanism to make it
possible. New legislation is always being written and sometimes
even passed to counter these trends, such as Ross (1979) notes on
building rehabilitation processes into the compensation process. But
the problem is more basic — the size of the pie, the amount of gold in
the pot. Capitalism determines this, not the disabled or the health
workers — at least, not yet.
One other area shows the same dynamics at work on a different
population — the deinstitutionalization of the severely disabled men-
tally ill. The Joint Commission's report in the early 1960s (Joint Com-
mission of Mental Illness and Health, 1962) was titled Action for
Mental Health. It recommended against long-term institutionalization
and recommended for expensive, thorough, well-staffed community
mental health centers. National and state fiscal policies and the down-
turn in mental health service funding after Nixon's election (after
correction for the inflation rate) led to a mass discharge phenomenon,
the emptying out of the institutions as a cost-saving matter. While the
goal of discharge is a progressive one, we are dealing here with some-
thing else, according to the latest reports of President Carter's Com-
mission on Mental Health (1978). We are now dealing with false defini-
tions of cure or capacity to function, by state hospitals unable to care
for patients, which then as a "solution" shoves them into the commu-
nity. Becker and Schulberg (1976) show that this has led to an up-
swing in rehospitalization rates and to community turmoil. But it is
cheaper than feeding all of them within the walls and paying for all
that staff or building expensive new community mental health cen-
ters. The same general political-economic forces we have described
work here to deny a haven and service to the chronic mental patient.
In general, we are simply making the point that the social crisis
has direct implications for who is defined as officially needing help,
and as the crisis escalates, fewer and fewer people will be defined as
needing it, while their true human need will rise, not fall. The pres-
ent dynamics also indicate less and less support, even for those who
qualify officially.
Ideology and the Rehabilitation Process
Rehabilitation costs money. This basic fact gets us immediately into
the level-funding and cutback phenomena that characterize the fiscal
crisis of today. The first ideological aspect of the cutback lies in the
Social Crisis and the Future of the Disabled 287
presentation of the literature as a fait accompli. Given the crisis, say
the spokesmen, we must tighten our belt and not ask for the things
we need. One typical message was that by Joe Califano (1977) con-
cerning the Rehabilitation Extension Act of 1976, Public Law
94-230:
The human predicaments you face, the handicaps and human tragedies
you work to overcome, have been made even more challenging by other
difficulties: constricted federal budgets; a troubled economy; a de-
pressed job market; and the danger that, as we reorganize state and
Federal agencies, programs for handicapped citizens may lose their or-
ganizational identity. (1977, p. 31)
I'm on your side, says Califano, but the budget will be constricted,
and you might get reorganized with less power and control over your
budget.
Another example of the gap between stated ideals and reality in
the area of law-making lies in the earlier legislation — the 1973 Act
with its stress on the rehabilitation of the severely disabled. Three
years later, at the same time as Califano's speech above, LaVor and
Duncan (1976) observed:
1. The "severely handicapped" population has not been clearly identi-
fied.
2. The law does not appear to be definitive regarding what is required
for "severely handicapped" people.
3. REA's targets or quotas are putting great pressure on states to pro-
duce new numbers in order to comply with a confusing directive
created by the 1973 Act.
4. It is being alleged that little is being done to implement the re-
quirements of the law regarding this population, (p. 56)
In the 1960s (Krause, 1965) I noted that state vocational rehabili-
tation counselors were pressured to produce "numbers" to maximize
the number of "closed, rehabilitated in employment" cases for each
state, in order to justify further federal spending on the rehabilitation
program. The social crisis of the past decade has, if anything, in-
creased this pressure, producing dynamic forcing agencies to serve
the least disabled first, that is, those most quickly and cheaply reha-
bilitated in large numbers. Then they can turn to the severely dis-
abled with the scraps that are left. Of course, special demonstration
projects are developed from place to place and time to time, but that
is never the point. The cost accountants' ascendancy in power at
HEW (especially under Nixon, Ford, and Carter) bodes ill for any
288 A Call to Action
upswing in spending here, as long as the broader context is not acted
upon and the ideology of "belt-tightening" is not challenged. By
contrast, I don't see the Defense Department tightening its belt, nor
too many within the government or the corporate world preaching to
it that it should.
In general, what seems to be happening is the growing accep-
tance by rehabilitation professionals, and the disabled themselves, of
a cost-accounting terminology and ideology that they can only suffer
by. Accept the premise and the battle is over — you have lost. Note
this, from a recent issue of the/owrnaZ of Rehabilitation, in an article
on zero-based budgeting:
In the increasingly stiff competition for limited dollars for human ser-
vice programs, those who are able to make the best case for both the
values of their programs' results and the maximization of available re-
sources, will be the ones who flourish in a new era of accountability. . . .
(lournal of Rehabilitation, 1977)
Who made the competition stiff? Who limited the dollars? What
about a group of the retarded who have only an average value pro-
gram? Who decides who is accountable to whom, and what are the
criteria of success? We are dealing here with a war of world views,
which do battle in lieu of the more basic conflict. We now have a
government organizing its fiscal and human services policy toward
minimum costs for corporate capitalism, through the processes out-
lined above. In such times, the economist becomes king within such
places as HEW's Health Care Financing Administration. Not that
costs shouldn't be a concern, but the degree to which they outrun all
else is the phenomenon of concern here.
What Can Be Done?
In a recent analysis of the American health care system, I had to
search for a title. I came up with Power and Illness (Krause, 1977).
The facts demanded a political sociological analysis of service sys-
tems, including who gets what and how. Rehabilitation is just one
aspect of the picture. But the picture will not change, in general or in
the field of rehabilitation, unless people act to make it change. Ac-
tion in dealing with this crisis must be, in my opinion, both short-run
and long-run.
In the short run, action should be taken against the present
trends in each area of analysis considered above. In the area of pro-
Social Crisis and the Future of the Disabled 289
duction of disability, those active in work in the rehabilitation field
can and should join forces with those fighting for occupational, envi-
ronmental, and transportation safety. You may often be a key ally to
these groups in their fight to prevent many of the problems of disa-
bilities with which you deal. Concerning the definition of disability ,
the workers in rehabilitation must be as political in their counterat-
tack against the attempt to narrow categories and tighten definitions
which exclude classes of the disabled as their opponents are political
in instituting these processes. Legal action is recommended. Popkin
(1977) notes that even in nonadversary proceedings in three pro-
grams (Federal Employees Compensation Act, Social Security, and
Veterans Disability Program) the programs awarded benefits more
frequently when the client had a legal representative present than
when he didn't. Challenges, including class-action suits, are a good
way of stopping, if not reversing, certain trends. In addition, Varela
(1979) recommends working with self-help action organizations run
by the disabled themselves, in the disability rights movement. And
in the area of funding for state vocational rehabilitation programs, far
greater action is needed to demand full funding of the new legisla-
tion on the books. At the same time, we must make sure that new
profit-making rehabilitation organizations do not do to this program
what the Medicaid mills did to that program.
But these are short-range goals. In the long run, we must ques-
tion whether capitalism may be allowed to exist in its present form in
the United States, given the costs we must pay to keep it healthy. It
will not do to argue blithely with the far right that capitalism pro-
vides the milieu necessary for freedom of speech. Capitalism has
flourished in Nazi Germany and in Franco's Spain. Nor will it do to
automatically discount a more socialized economy as leading to bu-
reaucracy— for we have that already.
We must ask, then, whether in the last analysis the social crisis is
nothing but a particularly intense example of business as usual under
advanced capitalism, business that is certainly not impeded when
the people are as weak and disorganized as they presently are.
Greater political organization, and the drastic diminution of the
power of the American corporations, if not their abolition in their
present form, is a goal of many new, nondoctrinaire organizations
such as the Committee for Economic Democracy. They are working
toward a changed economy while preserving our present political
freedoms. If my analysis of the context of the disabled is correct, and
if this social context affects their chances as I think it does, the
radical solution may in fact be the only practical one. After the
winter, but only if we act, comes the spring.
290 A Call to Action
References and Bibliography
Anderson, P. Considerations on western Marxism. London: New Left Books,
1976.
Ashford, N. A. Crisis in the workplace: Occupational disease and injury. A
report to the Ford Foundation. Cambridge, Mass.: M.LT. Press, 1976.
Becker, A., & Schulberg, H. C. Phasing out state hospitals: A psychiatric
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Cough, 1. The political economy of the welfare state. London: Macmillan,
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Grossman, H. I. A new concept of disability. /owrna/ of Rehabilitation, 1979,
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Mandel, E. Late capitalism. London: New Left Books, 1975.
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Social Crisis and the Future of the Disabled 291
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Ross, E. M. Legislative trends in workers' compensation rehabilitation. /our-
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Varela, R. A. Role of self-help organization in VR with severely disabled
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Wright, E. O. Class, crisis and the state. London: New Left Books, 1978.
Appendix
Disabled Peoples' Bill of
Rights
Preamble
We believe that all people should enjoy certain rights. Because people with
disabilities have consistently been denied the right to fully pari:icipate in
society as free and equal members, it is important to state and affirm these
rights. All people should be able to enjoy these rights, regardless of race,
creed, color, sex, religion, or disability.
1. The right to live independent, active, and full lives.
2. The right to the equipment, assistance, and support services neces-
sary for full productivity, provided in a way that promotes dignity
and independence.
3. The right to an adequate income or wage, substantial enough to
provide food, clothing, shelter, and other necessities of life.
4. The right to accessible, integrated, convenient, and affordable
housing.
5. The right to quality physical and mental health care.
6. The right to training and employment without prejudice or stereo-
type.
7. The right to accessible transportation and freedom of movement.
8. The right to bear or adopt and raise children and have a family.
9. The right to a free and appropriate public education.
10. The right to participate in and benefit from entertainment and recre-
ation.
11. The right of equal access to and use of all businesses, facilities, and
activities in the community.
12. The right to communicate freely with all fellow citizens and those
who provide services.
Reprinted by permission of the American Coalition of Citizens with Disabilities, 1200
15th Street, N.W., Washington, D.C. 20005.
292
Appendix 293
13. The right to a barrier free environment.
14. The right to legal representation and to full protection of all legal
rights.
15. The right to determine one's own future and make one's own life
choices.
16. The right of full access to all voting processes.
Author Index
Abram, H., 146
Allen, B., 44
Allport, G., 22, 23
Anderson, E., 225
Anderson, P., 277
Annand, D., 49
Anthony, W., 10
Ashford, N., 280
Austin, G., 4
Babigion, H., 281
Bakal, D., 176
Baker, W., 8
Bandura, A., 174, 180, 183, 186, 188,
189, 190
Barger, S., 141
Barker, R., 182
Baxter, D., 49
Becker, A., 286
Becker, E., 59
Becker, H., 6
Bell, N., 49
Beller, E., 181
Berkman, A., 73
Blackwell, B., 188
Block, J., 10
Bolles, R., 236, 237, 241, 243
Brady, O., 199
Brennan, D., 156
Brodner, R., 225
Brown, C., 146
Bruck, L., 113, 117, 263, 274
Brunner, J., 4
Cahnman, W. J., 43, 44
Caldwell, A., 222, 223
Califano, J., 287
Carley, E., 123
Carling, E., 11
Chase, C, 222, 223
Chilgren, R., 73
Chipouras, D., 71
Chyatte, S., 144, 145, 181
Cogswell, B., 158
Cole, S., 73
Cole, T., 73
Cornelius, D., 71
Couch, G., 49
Cruickshank, W., 173
Crystal, J., 241
Cummings, C, 225
Czaczkes, J., 144, 146
Daniels, S., 71
David, R., 44
Davidson, P., 199
Davidson, S., 199
Davis, D., 156
Davis, F., 9
DeBeneditti, M., 225
Dembo, T., 188
DeNour, A., 144, 146
Devaul, R., 227
Deyoe, F., 157
Dickson, S., 10
Dornbuster, S., 181
Drotar, D., 146
Duncan, J., 287
Durkheim, E., 218
Eisenberg, M., 11, 72
El Ghatit, A., 125, 157
Ellison, R., 53
English, R., 181
Erikson, K., 8
Evanski, P. M., 225
Eyer, J., 281
Faillace, L., 227
Farberow, N., 218, 220
Ferguson, J., 199
295
296
Author Index
Ferster, C, 201
Figgins, N., 146
Fisher, S., 181
Floor, L., 49
Fordyce, W., 179, 188, 199
Fromm, E., 17, 18, 21, 22, 23
Furlow, W., 73
Gaier, E., 10, 42
Ganofsky, M., 146
Gerson, D., 73
Godnick, M., 182
Goffman, E., 3, 6, 54, 66, 71
Goldberg, I., 281
Goldiamond, I., 182
Goodnow, J., 4
Gordon, S., 64
Gough, I., 278, 279
Go wan. A., 7
Greengross, W., 41
Groot, H., 220
Grossman, H., 284, 285
Hadler, N., 228
Hale, G., 116
Hall, J., 49
Hall, R., 227
Halsted, L., 73
Halsted, M., 73
Hanson, R., 157
Hart, W., 65
Hastrof, A., 181
Hathaway, K., 7, 8, 9
Heifetz, M., 139
Henrich, E., 8
Henry, J., 24, 25, 26
Henshel, A. M., 49
Higgins, P., 45, 47, 48
Hofstadter, R., 16, 17
Hohmann, G., 72
Holden, B., 72
Holland, J., 243
Hunt, P., 42
Ince, L., 188, 199
Jacques, M., 10
Kaplan, M., 139, 148
Katz, R., 188, 199, 209
Keenan, M., 160
Kemeny, J., 65
Kemph, J., 183
Kerr, N., 145, 157, 199
Kilhlea, M., 5
Kimball, C., 181
Kleck, R., 44
Klein, S., 144, 147, 148
Kosinski, J., 3
Kramm, E., 6
Krasner, L., 194
Krause, E., 284, 287, 288
Kriegel, L., 8
Lange, R., 73
Larsen, F., 103
Lasch, C., 40
Lassiter, R., 72
LaVor, M., 287
Leonard, C., 220
Leviton, G., 188
Levy, N., 146, 147
Linkowski, D., 10
Locke, B., 281
Mahoney, M., 186
Makas, E., 71
Mandel, E., 278
Manley, S., 127
Marx, K., 277, 281
Mechanic, D., 140, 183
Meier, R., 72
Melman, A., 73
Menninger, K., 218
Meyerson, L., 185, 186, 199, 212
Michael, J., 181, 197, 199, 211
Miliband, R., 277
Miller, J., 196
Mitchell, P., 156
Moakley, J., 10
Morse, W., 201
Mowrer, O., 199
Nehemkis, A., 220
Neisser, U., 188
Novak, M., 26, 27, 28
Author Index
297
Oberly, E., 147
Oberly, T., 147
O'Brien, M., 280
O'Connor, J., 277, 279
Osgood, C, 199
Page, J., 280
Parsons, T., 182, 183, 190
Patterson, W., 138
Pattison, E., 147
Pomerleau, O., 199
Popkin, D., 289
Poulantzas, N., 277
Powers, M., 148
Rachman, S., 180
Reich, C, 19, 20, 21
Reichsman, F., 146
Richardson, S., 43, 44, 181
Robinault, 1., 71
Rollin, B., 71
Romano, M., 65, 72
Rosen, B., 281
Rosen, M., 49
Rosenberg, P., 73
Rosenburg, J., 139, 148
Ross, E., 286
Royce, J., 43
Rustad, L., 74, 145
Safihos-Rothschild, C, 6, 40, 41, 43,
48
Salhoot, J., 73
Schilder, P., 180
Schmale, A., 138
Schneidman, E., 220
Schulberg, H., 286
Sebian, C, 6, 10
Semmel, M., 10
Shapiro, K., 60
Shontz, F., 173, 174, 175, 177, 181, 183
Simmel, M., 181
Simmons, R. G., 144, 147, 148
Simmons, R. L., 144, 147, 148
Sims, B., 127
Skinner, B., 190, 201, 202
Small, M., 73
Smith, A., 73
Smith, L., 8
Snell, J., 65
Sophie, L., 148
Sparks, R., 73
Staats, A., 199
Sternbach, R., 224
Stewart, T., 73
Stock, D., 73
Szasz, T., 227
Taub, A., 225
Taylor, C, 199
Taylor, J., 160
Terrace, H., 208
Thompson, G., 65
Thompson, M., 157
Tomko, M., 72
Trieschmann, R., 65, 157, 173
Tringo, J., 42
Tripp, E., 66
Turner, J., 181
Ullmann, L., 194
Ullmann, W., 277
Varela, R., 289
Vash, C., 8
Von Martin, A., 277
Warren, L., 183
Waugh, T., 225
Weinberg, M., 45, 47
Weinberg, N., 6, 10
Weiss, D., 183
Weiss, L., 49
Wilson, G., 180
Winget, C., 188
Wong, H., 48
Wooley, S., 188
Wright, B., 173, 178, 179, 182, 184,
185, 186, 188, 190
Wright, E., 278
Wylie, R., 181
Young, J., 10
Yuker, H., 10
Zirinsky, J., 73
Zisfein, L., 49
Zlutnic, S., 188, 199, 209
Subject Index
American Coalition of Citizens with
Disabilities, 265
Behavioral theory. See Psychologi-
cal theories of disability
Chronic Kidney Disease Amendment
to the Social Security Act, 144
Chronic pain, 217
family's role, 223
health care system's role, 225-228
indirect self-destructiveness, 218-
219
inflexible work rules, 229
Civil Rights Act (1964), 14, 15, 86
Conference of the President's Com-
mittee on the Employment of
the Handicapped, 261
Consumer rights, 263-264
Coping
disabled versus society, 25-26
styles of, by disabled, 45-48
Decision-making
locus of, 34, 38, 137-143
patients' rights, 32
Defense mechanisms, 179
Developmentally Disabled Assis-
tance and Bill of Rights Act, 82
Disability
in Bible, 5
definitions of, 65, 283-284
existential issues, 52-53
functional value, 5
individual reactions, 183
loss of authority, 41
pride of achievement, 59
as punishment, 5
as stigma, 66
theories of, 173-186
Disabled people
conflict with able-bodied's rights,
24
cultural pluralism, 27-28
viewpoints on disability, 7-8
Disabled's family problems
community resources, 166-167
family health, 165
interpersonal relations, 165-166
lack of research, 168
medical, 162-163
preparation of home, 163
Discrimination,
assumptions of, 6
process of development, 6
Disincentives to work, 128-131
Dysynchronous retirement, 228
Economic power of the disabled
effects of, 262
Education for All Handicapped Act,
82
The Elephant Man, 30, 31, 34
Empathy
methods for increasing, 91-92
need for, in architecture, 91
End-stage Renal Disease, 144, 147
Equal Credit Opportunity Act, 273
Fair Credit Reporting Act, 274
Fear
as motivator, 22
Financial benefits
housing subsidy, 133
no-fault insurance, 131
non-service connected pensions,
133
private insurance plans, 130
Social Security Disability Insur-
298
Subject Index
299
ance, 123, 127-128, 156, 196,
224, 228, 284, 289
VA service-connected pension,
132-133, 228, 298
Workers' Compensation, 124-127,
283, 284-285
Financial disincentives to rehabili-
tation, 128, 131, 196
Freud, Sigmund, 178
Friendship patterns
disturbance in disability, 43-44
Health care system
chronic pain, 225, 226-228
decision-making, 33-35, 38, 137-
140
social values, 149
Hemodialysis
description of, 144
home-bound, 146
in-hospital, 145
Implicit theories. See Psychological
theories of disability
Indirect self-destructive behavior
chronic pain patients, 220, 221-
222
types of, 218
Interstate Commerce Commission,
281
Job hunting
job markets, 237-244
special aptitudes of disabled, 236
Job interviews, 244-245
Justice
definition of, 79
Kidney Failure. See End-Stage Re-
nal Disease
Kidney Transplantation, 147
Labeling
effects on sexuality, 67
language of, 66-67
process of, 4
Learning
biofeedback, 204
differential reinforcement, 202
errorless discrimination, 208
extinction, 200
operant conditioning, 187
reinforcement contingencies,
195-196, 200
shaping, 202
social learning theory, 187
theories of, 186-189, 190
Marketplace problems
advertising, 265-266
financial, 272-274
grocery shopping, 268-270
insurance, 274-275
mail order, 267-268
restaurants, 272
transportation, 107-113, 271-272
Marriage, 49
Marxian economic theory, 276-299
Minnesota Multiphasic Personality
Inventory, 222-223, 226
National Commission on State Work-
men's Compensation Laws, 284
Occupational health risks, 280-281
Occupational Safety and Health Ad-
ministration, 139, 280
Psychoanalytic theory. See Psycho-
logical theories of disability
Psychological effects of disability,
178-179
Psychological theories of disability
formal criteria, 173
theoretical differences, 174
types of, 175-186
Quality of life, 35
Quinlan, Karen, 139
Recreation, 45
Rehabilitation Act (1973), 10, 13, 31,
80-81, 86, 115,283, 287
300
Subject Index
Rehabilitation Extension Act (1976),
287
Remediation of disabled's sexual
problems
educational, 73-74
psychotherapy, 72
surgical, 72-73
Remediation of discrimination
disabled people's behavior, 11
increased contact with able-
bodied, 10
information, 10
legal, 9
Remediation of disincentive-to-work
problems, 129-132
Remediation of individual psycho-
logical problems, 159-162
Requirement for mourning, 182
Rights of disabled
consumer, 263-264
decision-making, 32
intimate relationships, 41-42
Sexuality
definition of, 65
Sexual problems of the disabled, 72.
See also Remediation of dis-
abled's sexual problems
Social Darwinism, 16-17, 20
Social Security. See Financial
benefits
Social sources of disability
automobile safety, 281-282
malnutrition, 282
Societal pressures,
exclusionary type, 68
Societal value systems, 16-21
Sociological theory. See Psychologi-
cal theories of disability
Spinal cord injury
family problems, 162-167
family relationships, 157-159
Stigma,
levels of, 42-43
three types, 3-4
Technology
exercise equipment, 212-214
home accessibility, 164
marketplace access, 271-272
travel, 105, 108-113
Transportation needs, 107-113
Transportation policy, 116-118
Truth in Lending Law. See Fair
Credit Reporting Act
Urban Mass Transit Act of 1964,
115, 121
VA service-connected pensions, 133
White House Conference on Handi-
capped Individuals, 153-154
Whose Life Is It Anyway?, 30, 31,
36
Workers' Compensation. See Finan-
cial benefits
Jacobus tenBroek Library
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