Independent Living for Physically Disabled People: Developing, Implementing, and Evaluating Self-Help Rehabilitation Programs

A classic reference that chronicles the inception of independent living for people with physical disabilities in the United States. Originally published by Jossey-Bass in 1983, it was the first book to provide a comprehensive picture of the philosophy and services of independent living in the United States. It was originally published by Jossey-Bass, 1983.

It provided a beacon, usable by rehabilitation professionals and consumers, who were striving to create a path to full community integration. Although this book focuses on people with physical disabilities, much of it is equally applicable to independent living for people with mental retardation, mentally illness, and other disabilities as well as for senior citizens. In the years since its publication, the independent living movement has flourished, centers have been built, and many consumers have assumed their right to make decisions regarding their own lives. Still, the foundation provided by the authors of this book continues to be useful and relevant in the new millennium.

Authors, including Gerben DeJong, Lex Frieden, Denise Tate, Frank Bowe, Raymond Lifchez, Irving Zola, and Susan Stoddard describe such topics as the independent living paradigm, legislation and community organization, diverse program models, supportive environments, technology, key independent living services, program evaluation, and prospects for the future.

Part One: Foundations and Evolution of the Independent Living Movement

1. Defining and Implementing the Independent Living Concept :Gerben DeJong
2. Changing Social Attitudes and Legislation Regarding Disability: Rita A. Varela
3. Developing New Self-Images and Interdependence: Irving Kenneth Zola

Part Two: Models and Locations of Independent Living

4. Understanding Alternative Program Models: Lex Frieden
5. Developing Programs in Rural Areas: Lois O. Schwab
6. Learning from Methods Used in Other Countries: Thomas A. Lee
7. Overcoming Distance as a Barrier: John Malcolm Phillips
8. Designing Supportive Physical Environments: Raymond Lifchez

9. Attendant Care: Gerben DeJong, Teg Wenker
10. Peer Counseling: Marsha Saxton
11. Skills Training: Jean A. Cole
12. Accessible Transportation: Frank Bowe
13. Specialized Housing: Stephen F. Wiggins
14. Technology: Sheila Stephens Newman, John E. Schatzlein

15. Evaluating Program Methods and Results: Susan Stoddard
16. Using Field Research to Gain Subjective Insights: Nancy A. Brooks
17. Organizing Disabled People for Political Actions: Rita A. Varela
18. The Future of Independent Living: Nancy M. Crewe, Arthur Harkins
19. Toward Independent Living: Goals and Dilemmas 344

Epilogue Freedom for Disabled People: The Right to Choose: Nancy M. Crewe
References
Name Index
Subject Index

From Preface | From Part One | From Chapter 3

From Preface

Independent Living (IL) has been called a social movement, a service paradigm, a research model, a new discipline, a source of hope, and an idea whose time has come…

…IL means allowing people with disabilities to live as they choose in their communities rather than confining them in institutions. But his straightforward concept is not simple in its implementation. For the disabled person, it involves exchanging the safety of custodial care for the risk, stress, and effort involved in making the innumerable large and small decisions that shape one’s life. It means finding and maintaining the network of support services that are required just to survive and then reaching for the kind of involvement with other people that gives life meaning.

For the public, the IL movement means a commitment to bringing down the environmental barriers that have so long kept disabled people out of sight and away from our streets and public buildings. It also means supporting essential services, including attendant care and accessible transportation…

Although this book focuses on people with physical disabilities, much of it is equally applicable to IL for the mentally retarded, the mentally ill, and the elderly. We hope that it will serve to identify areas of common interest and thus help unify these groups in pursuit of opportunities for self-determination and a place in the community…

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From Part One, Foundations and Evolution of the Independent Living Movement

…Understanding the foundations of the movement is essential to grasping the methods and aspirations that characterize its evolution. The authors of chapters…, all of whom personally took part in shaping the growth of the independent living concept, not only recount events but also spell out their implications for everyone involved…They show how the movement is changing the way we view ourselves and each other as well as the problems that we seek to solve through our work…We must also work for changes in society and in the larger environment.

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From Chapter 3, Developing New Self-Images and Interdependence

…The world in general and the medical world in particular still too often feel that only they are in a position to know what is in the best interests of the disabled. Often, they contend that their years of experience and lack of personal involvement permit them to understand the disabled person’s needs more clearly than they do themselves. A personal experience shows how occasionally ludicrous this claim can be. One day, I entered the workshop of a prosthetist who had been in business for over fifty years. Noting that I had had polio and use a cane to walk, he motioned me to come near.

He: “I wonder if you’d try this cane.”
IKZ: “I did.”
He: “Well, what do you think?”
IKZ: “It seems solid enough.”
He: “Now watch this.”

He then took the cane from me, pushed a little button about three inches from the handle, and out popped a twelve-inch blade. Before I could say another word, he went on: “This one is even handier. Look!” Taking another cane, he again pressed a button and now brandished what might be called a ten-inch iron blackjack. “You know,” he said, “in times lie these, with so much crime in the streets, this self-defense cane should come in pretty handy.”

“Yes,” I replied in my best tongue-in-cheek fashion, “particularly if the thief lets me lean on him for support while I dismantle my cane.”

Nancy M. Crewe is a rehabilitation psychologist and associate professor in the Department of Physical Medicine and Rehabilitation at the University of Minnesota. She was trained in psychology at the University of Minnesota, receiving the B.A. degree in 1961, the M.A. degree in 1964, and the Ph.D. in 1967.

Crewe became involved with the Independent Living Movement when she chaired the Social and Environmental Aspects of Rehabilitation Committee for the American Congress of Rehabilitation Medicine, 1974-1979. When the book was first published (1983), she was working with two Minneapolis independent living organizations, Comprehensive Services for Disabled Citizens and Accessible Space. Her research and publications have dealt with psychology of disability, creativity, goal setting and outcome measurements, and functional assessments in vocational rehabilitation. In 1978, with Gary Athelstan and Ames Bower, she authored Employment after Spinal Cord Injury: A Handbook for Consumers.

Irving Kenneth Zola was professor and chair, Department of Sociology, Brandeis University. He was also a founding member and counselor at the Boston Self Help Center, an organization staffed by and serving people with chronic diseases and disabilities. He was trained in social relations at Harvard University, receiving his B.A. degree in 1956 and his Ph.D. in 1962.