Our textbook authors’ focus is on transcendence and disability. ?The implication in that focus is that disability is something one needs to transcen
Our textbook authors' focus is on transcendence and disability. The implication in that focus is that disability is something one needs to transcend. What are your immediate reaction to that statement? I ask because disability is an identity. Should we look to transcendence of an identity as a goal? Or should the focus be on acceptance? Or is there something I am missing?
(textbook author) Vash, C and Crewe, N. (2003). Psychology of Disability. Springer Publishing
Springer Series on Rehabilitation
Myron G. Eisenberg, PhD, Series Editor Veterans Affairs Medical Center, Hampton, VA Thomas E. Backer, PhD, Consulting Editor
Human Interaction Research Institute, Los Angeles, CA
2003 Psychology of Disability, 2nd ed. Carolyn L. Vash, PhD, and Nancy M. Crewe, PhD
2003 The Handbook of Rehabilitation Counseling T. F. Riggar, EdD, and Dennis R. Maki, PhD, CRC, NCC, Editors
1998 Medical Aspects of Disability: A Handbook for the Rehabilitation Professional, 2nd ed. Myron G. Eisenberg, PhD, Robert L. Glueckauf, PhD, and Herbert H. Zaretsky, PhD
1997 Rehabilitation Counseling: Profession and Practice Dennis Maki, PhD, and Ted Riggar, EdD
1994 Personality and Adversity: Psychospiritual Aspects of Rehabilitation Carolyn L. Vash, PhD
1991 Treating Families of Brain-Injury Survivors Paul R. Sachs, PhD
1991 Disability in the United States: A Portrait From National Data Susan Thompson-Hoffman, MA, and Inez Fitzgerald Storck, MA, Editors
1988 Family Interventions Throughout Chronic Illness and Disability P. W. Power, SdD, CRC, NCC, A. E. Dell’Orto, PhD, CRC, and M. B. Gibbons, RN, MS, CPNP
1986 Applied Rehabilitation Counseling T. F. Riggar, EdD, Dennis R. Maki, PhD, and Arnold Wolf, PhD
1985 Handbook of Private Sector Rehabilitation Lewis J. Taylor, PhD, CRC, Marjorie Golter, MS, CRC, Gary Golter, MA, and Thomas E. Backer, PhD, Editors
1984 Chronic Illness and Disabilities Through the Life Span: Effects on Self and Family Myron G. Eisenberg, PhD, Lafaye C. Sutkin, PhD, and Mary A. Jansen, PhD
1982 Behavioral Approaches to Rehabilitation Elaine Greif, PhD, and Ruth G. Matarazzo, PhD
1982 Disabled People as Second-Class Citizens Myron G. Eisenberg, PhD, et al.
1981 The Psychology of Disability Carolyn L. Vash, PhD
Carolyn Vash, PhD, is a psychologist whose current professional interests span theoretical and philosophical psychology, humanistic psychology, psychology of the arts, and the psychology of religion. She conducts a limited consulting practice based in Altadena, Califor- nia but devotes most of her time to writing. She has previously worked as a rehabilitation psychologist, administrator, researcher, and educator. In addition to the first edition of Psychology of Disability, she has had two other books published by Springer Publishing Company. Their titles were The Burnt-Out
Administrator (1980) and Personality and Adversity (1994). Her next book examines the nature of consciousness through lenses provided by the most ancient of wisdom teachings and the most recent conceptions of complex- ity science.
Nancy Crewe, PhD, is a rehabilitation psy- chologist and professor at Michigan State Uni- versity where she coordinates the master’s degree program in rehabilitation counseling. Prior to taking that position she spent 16 years as a faculty member and clinician in the De- partment of Physical Medicine and Rehabili- tation at the University of Minnesota. Her research interests have revolved around psy- chological and social aspects of spinal cord injury. She won the American Rehabilitation Counseling Association’s 1997 Research Award for Life Stories of People With Long- Term Spinal Cord Injury. Previous books in-
clude Employment After Spinal Cord Injury (1978), written with G. T. Athels- tan and A. S. Bower, and Independent Living for Physically Disabled People (1983), edited with Irving K. Zola. Current interests include narrative psychol- ogy, spirituality and disability, and complexity science.
Psychology of Disability Second Edition
Carolyn L. Vash,PhD Nancy M. Crewe, PhD
Copyright 2004 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. 536 Broadway New York, NY 10012-3955
Acquisitions Editor: Sheri W. Sussman Production Editor: Sara Yoo Cover design by Joanne Honigman
04 05 06 07 08/5 4 3 2 1
Library of Congress Cataloging-in-Publication Data
Vash, Carolyn L. Psychology of disability / Carolyn L. Vash, Nancy M. Crewe.—2nd ed.
p. cm.—(Springer series on rehabilitation) Includes bibliographical references and index. ISBN 0-8261-3342-8 1. People with disabilities—Psychology. 2. People with disabilities—
Rehabilitation. I. Crewe, Nancy M. II. Title. III. Series. HV3011.V37 2003 362.4'048'019—dc21 2003052980
Printed in the United States of America by Integrated Book Technology.
Contents
Foreword Roberta B. Trieschmann, PhD vii Preface ix Introduction xi
Part I The Disability Experience
1. The Person: Reactions to Disablement 3
2. The World: People With Disabilities in a Handicapping World 26
3. Surviving: Living Independently 46
4. Loving: The Family 64
5. Pairing: Sexuality and Intimacy 85
6. Working: Getting Educated and Employed 107
7. Playing: Friendship and Recreation 129
8. Transcending: Disability as Growth Experience 146
Part II Interventions
9. The Long Arm of the Law 165
10. Individual Differences 193
11. Psychogogic Approaches 221
12. Peer Counseling and Related Services 251
13. Psychotherapeutic Approaches 267
14. Looking Ahead 281
References 301
Index 321
v
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Foreword
What a gift this second edition of Psychology of Disability is! Such wisdom, such clarity, such practicality. What a gift to have the opportunity to experi- ence the partnership of Carolyn Vash and Nancy Crewe, each a recognized leader in the field of rehabilitation of persons with physical disabilities. Each woman has decades of valuable and practical experience in the counseling psychology and vocational rehabilitation arenas, giving them personal experi- ence with thousands of individuals who have faced the challenges of surviving the draconian financial web of social legislation, individuals who have coped with the psychosocial issues of relationships in a society that does not openly embrace those with disabilities, and individuals who have found satisfaction and contentment from life in the family, the workplace, and community.
Life for people with disabilities has changed dramatically since 1945 when the United States was flooded with individuals injured in WWII and those who had survived the polio epidemics of the 1940s and 1950s. This influx of people challenged the notion that individuals with impairments should not expect to participate in society fully and publicly and should be content to remain at home, cared for by family. Thus the fields of medical and vocational rehabilitation evolved and gained great credibility in the 1960s through major infusions of federal funds for state departments of vocational rehabilitation, rehabilitation research and training centers in major medical schools, and training programs for psychologists and vocational rehabilitation counselors in universities. In this era, the professionals were viewed as the fount of all wisdom regarding disability, but unfortunately this “wisdom” was sometimes nothing more than ivory-tower philosophical speculation, especially when it came to the process of adjusting psychologically to disability. Although most professionals were very well intentioned and sincerely desired to help, their personal knowledge of the disability process was limited to textbooks and offices. In the hospitals, many physicians took a “father knows best” attitude, but despite helpful medical knowledge, this paternalistic attitude grated. Thus, the disability rights movement arose in the early 1970s in order to give people with disabilities a greater voice in their own rehabilitation planning and service delivery system. Eventually, federal and state governmental policies shifted to include those with disabilities in the overall right to have equal opportunity in the community and at work, and with regard to health care services.
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viii Foreword
It is helpful to place the changes in the lives of those with disabilities in the context of the changes occurring in American society. In the 1950s and even early 1960s, America was a country in which the interests and attitudes of the White, Anglo-Saxon, Protestant—and, we should add, male—group dominated. However, in the last forty years, this country has evolved into a celebration of multicultural diversity so that people with disabilities are one of many groups expecting full participation in society. But this book becomes an opportunity not only to celebrate our multicultural diversity, but also to celebrate our unity. Each chapter addresses issues that are relevant to every- one. People with disabilities have the same needs, hopes, and dreams as the readers of this book. And this book addresses issues that are crucial to all of our lives and presents some of the challenges that a person with disability may face which the reader may or may not face. The abiding message is that we are all part of the family of man, all welcome, and that the ways in which we are the same are vastly greater than the ways in which we are different. The beauty of this book is in its essential humanity.
Both Drs. Vash and Crewe began their careers in the 1960s, somewhat prior to the advent of the disability rights movement, and thus they have had the opportunity to observe and participate in the almost dramatic changes at the societal level leading to the inclusion of people with disabilities in all phases of community life. Furthermore, each of them has had a profound impact on the attitudes of two generations of rehabilitation professionals through their research, publications, lectures, and involvement in policy ori- ented conferences and reports. Thus, this book represents a most beautiful integration of their decades of professional and personal experience and the wisdom that accrues with such seniority.
Roberta B. Trieschmann, PhD
Preface to the Second Edition
Two eventful decades have passed since the printing of the first edition of this book. The disability rights movement has grown and come of age. Its achievements include taking a key role in the creation and passage of stunning legislation, particularly the Americans with Disabilities Act. Although attitu- dinal and social barriers remain, people with disabilities have more opportuni- ties and greater basis for optimism than they did a generation ago.
Technology has developed remarkably and presented new opportunities for overcoming functional limitations. Legislation has made illegal the kinds of overt discrimination that used to be commonplace. Health care systems have evolved, offering improved medical and rehabilitation care but also creating economic barriers that limit access for uninsured people, including many with disabilities. In contrast to our rapidly changing society, human nature changes slowly. The writings of David, Socrates, and Shakespeare reveal thoughts and feelings that are immediately understandable to twenty- first century readers.
Consistent with this observation, differing degrees of change were neces- sary in the parts of the book that deal with human emotions, thoughts, and behaviors and the parts that discuss the environment in which people live. One of the ways in which the world has changed is in the language that we use. Terminology has evolved from words like crippled to handicapped to disabled. “Person first” terminology is currently most widely accepted because it is seen to focus on the whole person rather than on the disability as his or her defining characteristic. On the other hand, some disability activists are calling for a return to the earlier custom of referring to a disabled person. They maintain that it accurately represents their identification with the disability community and their disability pride. We still prefer the person first approach and have generally used it throughout the book, but not slavishly. Both rationales have merit, and both are presently acceptable styles.
Another change involves the burgeoning body of research related to the psychology of disability. Several significant journals are focused on disability research, and other journals occasionally include relevant articles. Further, the Internet provides both direct access to quantities of information and ready
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x Preface to the Second Edition
entrée to material published in traditional formats. The second edition has taken advantage of these expanded resources and put additional emphasis on research citations.
The book still represents an effort to share the authors’ decades of personal and professional experiences with disability. The first author has lived for some 50 years as a severely disabled individual, and the second author is experiencing disability as a concomitant of aging. Both authors have been enriched by careers as rehabilitation psychologists, educators, and researchers. The collections of people who have interacted with us in any of these roles and thus contributed directly or indirectly to the content of the book are too numerous to acknowledge individually. Nevertheless we want to express our deep appreciation to our families, colleagues, and customers who may recognize their influence in our work.
Introduction
It has been said that everyone is like all of the other people in the world in some ways, like those in similar groups in some ways, and like no other person who has ever lived in some ways (Leong, 1996). Dangers inhere in acknowledging the validity of the concept “the psychology of disability,” since, in the past, it has led to unhelpful exaggerations of the perceived differences between people with disabilities and those without. The fact is, human beings are more alike than different, regardless of variances in their physical bodies, sensory capacities, or intellectual abilities. To illustrate, a disabled person is said to experience a sense of loss over the functional abilities that an illness or injury has destroyed. Similarly, a nondisabled person may experience a sense of loss over something she or he once had and now has lost. The stimulus is different, but the sense of loss, the fear that life will be painful or meaningless without the lost element, are virtually the same. Viewed in this light, the psychology of disability is little different from the psychology of being human.
The definition of the psychology of disability underlying the material in this book is considered here to be largely, though not entirely, the study of how human organisms respond to a set of stimulus conditions associated with disability. Stated somewhat differently, it is a study of normative re- sponses from (psychologically) normal organisms to abnormal stimuli.
Some of these abnormal stimuli are biological, such as being paralyzed. Some are environmental, such as inaccessible entrances. Others are social, such as having a salesperson ask your companion, not you, what size you wear. Not being able to get a job is an economic example. Some stimuli are obvious, such as a restroom door you can’t get through, while others are subtle, like people not using the work “handicapped” when you are around. Some are pleasant, such as being allowed to enter an airplane first. Some are unpleasant, such as not being able to use the restroom on a long flight. Pages could be filled with such examples, which in itself illustrates the unusual stimulus situation the disabled person is in: a continual flow of perceptions and experiences that cannot be validated by the majority of people around one. Thus, isolation and lack of consensus for one’s ideas and feelings are added to the list of unusual stimulus conditions. And so it goes.
Following from this, the psychology of disability becomes bifurcated as an applied science. One branch is a rather typical applied behavioral science,
xi
xii Introduction
embodied in a group of professionals who use the findings of research and clinical experience to help people with disabilities cope with, adapt to, and adjust to other unusual stimuli. The other branch is embodied in an activist movement by a group of people determined to alter the stimulus conditions because the world needs “treatment” more than the people with disabilities.
This latter branch emerged slowly after World War II, when medical science found ways to save wounded soldiers who then returned, significantly disabled, to a society that felt it owed them something. Acknowledging a debt and paying it are two different things, however, and little progress was made. The civil rights movement pointed the way, with special impetus flowing from the 1965 Watts riots. A segment of the African American population in south central Los Angeles engaged in violent, self-destructive behavior for six days; somehow, one of the results of it was that blacks all over the country, other racial minorities, women, people with disabilities, and multitudes of other groups who had accepted powerlessness and half- filled cups all of their lives began to scream. They saw more clearly that society, even an indebted one, is not going to fix itself for you. The folks with the problem must come up with the solution. They also rediscovered the Constitution. Everyone had known all along that African Americans were deprived regularly of their constitutional rights, but whoever thought that people with disabilities were? The “expectation explosion” became a chain reaction, and “consciousness raising” tried to ensure that everyone’s expecta- tions were as high as they should be.
Prior to this paradigm shift, virtually all of the emphasis in rehabilitation was on modifying the “patient” to fit into the world as it was. Patients were modified by medicine, surgery, physical therapy, occupational therapy, psychotherapy, vocational counseling, social casework, prosthetic and or- thotic devices, education, training, and much, much more. Family homes were remodeled, occasionally at public expense, but to expect all housing to be built to be accessible to people with disabilities would have been viewed as an idealistic delusion. The motto was, “If a round peg doesn’t fit in a square hole, you square the peg, you don’t ream out the hole.”
Some changes have taken root. The “other half” of the psychology of disability has become the politics of disability. This is only right; it’s not good for people, psychologically speaking, to be deprived of their constitu- tional rights. If the applied psychology of disability is to be a helpful discipline, then it must tend to the business of altering destructive stimulus conditions, as well as modifying disabled individuals and their responses.
Scope and Purpose
The Psychology of Disability is intended to serve as a textbook or collateral reading source for students engaged in the study of the psychological aspects
Introduction xiii
of disability, as well as a general resource for rehabilitation professionals in the full spectrum of allied health and vocational service disciplines. The material is presented in two parts, which might be labeled “What it’s like to be disabled” and “what people who are inclined to help can do.”
Part I, “The Disability Experience,” is an effort to admit the reader into sundry corners of the experiential worlds of people with disabilities. It is a phenomenological accounting of the ways in which disabled people confront and are confronted by the world and of how they go about the business of living under the sometimes peculiar circumstances disability can generate. It attempts to present the psychological experience from the perspectives of people who have disabilities; the inner states and processes, the interpersonal situations and interactions, and the behavioral mechanisms and patterns that emerge. The eight chapters of Part I chronicle both the objective and subjective experiences associated with being a disabled person in a handicapping world and how these affect the basic life functions of surviving, living, working, playing, and—for some at least—transcending both the disability and the more troubling aspects of the world.
Part II, “Interventions,” is a response to the problems and sources of psychological pain that are exposed by the discussions in Part I. It describes some major ways in which changes can be wrought; some are designed to improve the world, and others are intended to help disabled individuals react constructively to the conditions life has proffered. Interventions aimed at changing the world traditionally were not thought of as psychological services, but they may have a profound effect on the psychological well-being of an individual. Transcending disability is much easier if basic survival and quality of life issues have been addressed by the society, so Chapter 5 deals with disability-relevant legislation and policy. The remaining five chapters are devoted to intervention strategies used by psychologically trained profession- als (for example, psychologists, rehabilitation counselors, social workers, psychiatrists, speech pathologists), other rehabilitation professionals (for ex- ample, nurses, occupational therapists, physical therapists, physicians), peer providers (for example, peer counselors), and social/behavioral scientists. Four of these chapters deal with ways to help disabled people improve the quality of their lives by working on themselves (as opposed to changing the world). The last deals with the future, touching on some of the current and critical issues for people with disabilities in America. These include the growing interest in racial and ethnic diversity, aging, and technology. The chapter ends with an exploration of spirituality and disability.
Unavoidably, the choice of subject matter and manner of presentation reflect the authors’ belief systems regarding what the psychology of disability is all about, thus determining the issues considered important enough to include, the programs viewed as successful, and the policy decisions sug-
xiv Introduction
gested. Moreover, the authors’ personal and professional experiences have been preponderantly weighted in the area of physical disabilities; therefore, the selected issues and case examples may reflect this experiential loading despite conscious efforts to the contrary.
The Issues
The commonality of experience among people with different types of disabili- ties is great because all of them share the processes of being devalued as a result of having a disability and learning to accept all that disablement entails. It may be too sweeping a statement, but devaluation and acceptance seem to constitute the underlying cause and inherent solution to most of the specific psychological problems associated with disability. The form of disability, however, does shape the manifest problems, so it is necessary to examine the specific ways in which various impairments impact people’s lives. For example, deafness or even blindness may impede a person’s participation in a conversation, whereas severe physical disability might prevent one from attending the gathering at all.
Probing further, although sensory, motor, and internal disabilities have significantly different impacts, they all reflect bodily dysfunctions, as opposed to impaired mental processes. With disabilities such as these, one can adopt rather comfortably the definition stated earlier: the psychology of disability is the study of normative responses from psychologically normal organisms to abnormal stimuli. Naturally, there are exceptions; people who could not be considered “psychologically normal” become disabled, too, and occasion- ally the disablement proves to be the stress that pushes a vulnerable individual into neurosis or psychosis. More to the point, many people have disabilities that are explicitly psychological in nature, such as mental retardation or mental illness. While it would not be reasonable to assert that they are “psychologically normal organisms,” it is still true that many of the psycholog- ical problems experienced are not due to the mental disabilities per se, but to such abnormal stimuli as being devalued in the eyes of others. In this light, it is important to focus on abnormalities in stimulus situations before ascribing abnormality to the psyches of disabled individuals, even when the disability is mental in nature. Although the “letter” of the definition must be altered somewhat to accommodate this portion of the disabled population, the “spirit” of the definition is equally applicable.
Devaluation and acceptance: these are considered the pivotal variables in adjusting to life when it is complicated by disability. Let us look at each in more detail.
Introduction xv
Devaluation
Following close behind outright oppression in terms of psychologically dam- aging consequences is devaluation, that is, being regarded as a lesser being, inferior, not very capable, not very useful, possibly burdensome, unaesthetic, and, generally, one down. People with disabilities consistently experience devaluation in the eyes of others, and their own. This is true regardless of the nature of the disability, whether it impairs physical, sensory, or mental functioning. The phenomenon was illustrated powerfully at a rehabilitation conference held in California a number of years ago. Dr. William Rader— psychiatrist, psychodramatist, and public performer par excellence—began an arousing display of the tragic, even deadly, effects of communication misfires between helpers and helpees with a simple routine. He addressed the audience, alternately standing up and then sitting in a wheelchair, all the while challenging them to deny that their perceptions of his competence fluctuated as he stood and sat, stood and sat. There was much discussion afterward, and virtually all in attendance, from able-bodied to very severely disabled, acknowledged that their views of his competence had changed, had alternated dizzyingly as he stood and sat; that he had appeared more credible, more worthy of attention when he stood. It was an emotionally draining experience for many. It was a confrontation of prejudice they had ignored or denied for a long time. Why such an impact from recognizing that one does, indeed, devalue people with disabilities? Can it be changed? Probably not, unless it is first acknowledged and examined in every aspect.
The first line of inquiry addresses whether such prejudice is biologically based. Does the human species instinctively shun damaged organisms because their perpetuation could threaten the survival of the species? The anthropologi- cal observation that numerous primitive tribes leave aged or injured members to die because efforts to save them would endanger larger numbers is familiar to many. Is it possible that biological mechanisms which once operated for species protection have not caught up with an affluent and technologically advanced civilization that has rendered them anachronistic? No one knows.
The second line of inquiry is psychosocial, but the content is similar. People tend to shun, be prejudiced against, or devalue individuals who are different. This is more so if the difference occurs at the low end of the distribution, that is, if the individual has less of something than most people have. But people who are too beautiful or too brilliant or too rich, or extraordi- narily kind come in for their share of suspicion and punishment as well. This phenomenon may have biological substrates also, since it appears to have been “learned” by almost every culture on earth. Can people learn to tolerate a wider range of differences? How?
xvi Introduction
The third line of inquiry is politicoeconomic. In an affluent, technologically advanced society, saving lives and improving the quality of life for those saved but left damaged is not going to threaten the survival of the species. It can, however, reduce the sum total of goods available for the rest. Despite substantial advances in the past 25 years, people with disabilities, especially severe ones, are still viewed as a group of “takers” who don’t put much back into the system, into the family, the community, or the larger society.
Considering materialistic values only, this may be a valid notion. If severely disabled individuals lack the inner resources or miss the strokes of fortune leading to jobs paying enough to support high-cost needs, then the issue is not whether the public pays, but how. Should there be a tax-supported welfare system or should the person be subsidized through an employer who, in turn, passes the cost on to the public in increased prices for goods and services? In terms of the long-run impact on the purses of the people, there may be little difference. In terms of the psychological well-being of the disabled people affected, the difference may be great.
Even in pragmatic terms, people with disabilities may contribute by serving as the impetus for technological innovations that then are adopted and benefit the population at large. One of the amusing objections offered to providing accommodations to a worker with a disability is that “if he gets it, everyone will want one.” And if everyone should get it (e.g., an ergonomically designed chair or more flexible working hours), and if morale and productivity improve as a result, where is the harm?
If one looks beyond the material to spiritual values, the issue becomes meaningless. If one has faith, or at least adopts the belief, that the purpose of life is spiritual development rather than materialistic acquisition, then sharing of goods with those unable to produce their own is not inconsistent with enlightened self-interest. The reason for this is an associated faith that we are all parts of the same universal spirit, wherein selfishness and unselfishness become, paradoxically, the same. Just as one must “selfishly” pursue one’s own development—and sometimes deny others—if one is to become a truly beneficial influence for others, so must one also pursue the removal of hindrances to others’ development, because to do otherwise is ultimately to impair one’s own. There is no reason to believe that people with disabilities put less into this system than anyone else.
Over the years relatively little investment has been made in the provision of psychological services to people with disabilities. In addition to the public’s frugality, disabled individuals may be motivated to handle adjustment issues on their own. A great deal of help and dependency are accepted because there is no other choice consonant with survival. To need still further help,
Introduction xvii
implying emotional as well as physical dependency, is unacceptable, so the need is denied. Beyond this, the social sanctions against getting psychological or psychiatric help interfere with asking, e
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