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What We Have Done

An Oral History of the Disability Rights Movement

Fred Pelka

Publication Year: 2012

“Nothing about us without us” has been a core principle of American disability rights activists for more than half a century. It represents a response by people with disabilities to being treated with scorn and abuse or as objects of pity, and to having the most fundamental decisions relating to their lives—where they would live; if and how they would be educated; if they would be allowed to marry or have families; indeed, if they would be permitted to live at all—made by those who were, in the parlance of the movement, “temporarily able-bodied.” In What We Have Done: An Oral History of the Disability Rights Movement, Fred Pelka takes that slogan at face value. He presents the voices of disability rights activists who, in the period from 1950 to 1990, transformed how society views people with disabilities, and recounts how the various streams of the movement came together to push through the Americans with Disabilities Act of 1990, the most sweeping civil rights legislation since passage of the Civil Rights Act of 1964. Beginning with the stories of those who grew up with disabilities in the 1940s and ’50s, the book traces how disability came to be seen as a political issue, and how people with disabilities—often isolated, institutionalized, and marginalized—forged a movement analogous to the civil rights, women’s rights, and gay rights movements, and fought for full and equal participation in American society.

Published by: University of Massachusetts Press

Cover

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pp. i-ii

Title Page

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pp. ii-iii

Copyright Page

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pp. iv-

Dedication Page

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pp. v-vi

Table of Contents

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pp. vii-viii

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Preface

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pp. ix-xiii

“Nothing about us, without us” is one of the most compelling slogans to come out of the disability rights movement. The phrase succinctly conveys one of the movement’s central themes, reflecting the fact that people with disabilities, down through the ages, have generally been seen as objects of scorn or pity, “cases” to be cured or “managed,” problems to be confronted or ignored.1 The most basic decisions about their lives—decisions about where they should... live, if and how they should be educated, if and where they should work, and whether they could or should marry and raise families—have most often been made entirely without their input. Advocates have had to...

List of Acronyms

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pp. xv-xvi

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Introduction

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pp. 1-29

With these words attorney John W. Davis, arguing before the US Supreme Court in defense of racial segregation in Brown v. Board of Education, unwittingly drew what was to become the defining analogy of the American disability rights movement of the second half of the twentieth century.
“I remember vividly the delight between Gunnar [Dybwad] and myself when we discovered this,” says Thomas K. Gilhool. Gilhool had been retained in 1969 by the Pennsylvania Association for Retarded Children (PARC) as the lead attorney in its landmark right-to-education case, PARC v. Pennsylvania...

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Chapter 1. Childhood

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pp. 30-47

The idea that disability is a taint, a statement about the inherent worth or character of the person with the disability, works itself out most painfully on children with disabilities who absorb, often without knowing, this prevalent but generally unspoken judgment. It can be manifest in everything from schools with names such as “The Industrial School for Crippled and Deformed Children”1 to run-ins on the street with complete strangers wanting to know “what’s wrong with you?” to a popular culture that routinely uses disability to denote wickedness...

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Chapter 2. Institutions, Part 1

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pp. 48-60

The activists profiled in chapter 1 were among the more fortunate of their contemporaries. For although some of them endured extended hospitalizations or stints in rehabilitation institutions and all were affected by disability-based prejudice and stereotypes, all of them spent the greater part of their childhoods at home with their families. From the late 1800s well into the twentieth century, however, this was not the case for millions of people with disabilities. Because the consensus of “expert opinion” during that time was that people with disabilities, particularly those labeled “mentally retarded” or “mentally ill,” should be institutionalized...

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Chapter 3. Discrimination, Part 1

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pp. 61-76

Before the advent of the disability rights movement, discrimination against a person with a disability, regardless of skill or circumstance, simply on the grounds that he or she was “handicapped,” was legal in the United States. This meant, for example, that public schools could—and routinely did—refuse to allow a child with a disability to attend classes, even though by definition they had an obligation to educate “every” child in the community and even though the child’s parents might still be obligated to pay school taxes. It meant that a landlord could refuse to rent to someone because that person was blind or deaf or because...

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Chapter 4. Institutions, Part 2

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pp. 77-93

Not all of the people who were institutionalized entered the institutions as children. Nor were they all institutionalized against their will. And though the worst of the massive state institutions offered only “custodial care,” or in the case of the larger mental institutions “milieu therapy” (just being confined in such a place was alleged to be therapeutic), other facilities did indeed offer needed services—rehabilitation from spinal cord injury or polio, education, even peer support...

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Chapter 5. The University of Illinois

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pp. 94-112

The Serviceman’s Readjustment Act of 1944 (commonly called the GI Bill of Rights), provided every American serviceman or -woman honorably discharged after World War II with the opportunity to pursue a college education. Among those eligible were veterans disabled as a result of their service. However, although they wanted to attend college like their nondisabled peers, they found that, almost without exception, American schools were either unwilling or unable to accommodate them...

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Chapter 6. Discrimination, Part 2, and Early Advocacy

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pp. 113-130

Attempts had been made before the 1960s to address discrimination against people with disabilities. The League of the Physically Handicapped, the American Federation of the Physically Handicapped, the National Federation of the Blind, and the National Association of the Deaf had all, with some success, pushed for changes in how American society treated citizens with disabilities. But by the early 1960s, both the League and the American Federation were defunct, and neither the NFB nor the NAD considered themselves as part of a broader, cross-disability rights movement. Meanwhile, other disability-specific groups, such as United Cerebral Palsy, Inc., and the Muscular..

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Chapter 7. The Parents‘ Movement

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pp. 131-150

In the 1930s, parents of children with disabilities, particularly children diagnosed with cerebral palsy and mental retardation, began organizing into small, local support groups to discuss issues of mutual interest. This process accelerated in the mid- to late 1940s, largely because of the participation of returning veterans, who believed that their communities owed their families consideration after their service to the nation. All this activity led, in 1949, to the founding of the United Cerebral Palsy Associations, Inc., and, in 1950, the National Association of Parents and Friends of Mentally...

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Chapter 8. Activists and Organizers, Part 1

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pp. 151-173

Little People of America was founded in the mid-twentieth century by activists who were weary of being marginalized by mainstream American society purely on the basis of their physical appearance. LPA, along with the National Association of the Deaf, the Paralyzed Veterans of America, and the National Federation of the Blind, ranks as one of America’s oldest disability rights organizations in existence today....

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Chapter 9. Institutions, Part 3

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pp. 174-182

Willowbrook holds a special place in the history of disability rights, and Dr. Bronston, more than any other single person, was responsible for bringing the horrific conditions there to the public eye. A grand-nephew of Leon Trotsky, Bronston was a political activist as far back as medical school, when he wrote an open letter to President Kennedy protesting the administration’s cold war policies. From medical school he went to the Menninger Institute in Topeka, Kansas (where Rev. Perske had been institution chaplain)...

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Chapter 10. Activists and Organizers, Part 2

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pp. 183-196

Disabled in Action was founded by Judith Heumann in New York City as a direct action disability rights group. This was, in 1970, a radical idea in and of itself, since almost all organizations having to do with disability were either service organizations, run and staffed by non-disabled, medical or quasi-medical professionals, or single disability constituency groups such as the National Federation of the Blind or the National Association of the Deaf. Even the Berkeley Center for Independent Living and its predecessor, the Physically Disabled Students’ Program at UC Berkeley, were first established...

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Chapter 11. Independent Living

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pp. 197-226

In 1962, Ed Roberts, finishing his second year at the College of San Mateo, decided to transfer to the University of California at Berkeley. Because none of the dormitories were wheelchair accessible (and none could accommodate the “iron lung” he needed at night), Roberts moved into Cowell Hospital, the campus infirmary. His presence attracted media attention (most notably, an article in the San Mateo Times with the headline, “Helpless Cripple Attends U.C. Classes”), which in turn drew other students with disabilities to the campus...

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Chapter 12. The Disability Press

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pp. 227-245

The 1970s and early 1980s, during which so much disability rights activism took place, also saw the emergence of an overtly political crossdisability press. This means of communication was especially vital in the days before the widespread use of fax machines—let alone the advent of the Internet, social networks, and e-mail listservs—and when long distance phone calls were prohibitively expensive for a community in which many members were on low or fixed incomes. Among the most widely read of these new publications...

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Chapter 13. The American Coalition of Citizens with Disabilities

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pp. 246-260

The American Coalition of Citizens with Disabilities (ACCD) was incorporated in 1975 to advocate for the rights of people with disabilities on a national level. During its heyday in the late 1970s and early 1980s, it sponsored the founding of state and local chapters, lobbied for legislation, and coordinated national campaigns on issues ranging...

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Chapter 14. The Hew Demonstrations

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pp. 261-282

The anniversary of the date on which the Americans with Disabilities Act was signed, July 26, 1990, is commemorated in many towns and cities each year as “disability pride” day, but the anniversary of April 5, 1977, usually passes without...

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Chapter 15. Psychiatric Survivors

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pp. 283-302

Judi Chamberlin cites as a fundamental principle of the psychiatric survivor movement the belief that “all laws and practices which induce discrimination toward individuals who have been labeled ‘mentally ill’ need to be changed, so that psychiatric diagnosis has no more impact on a person’s citizenship rights and responsibilities...

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Chapter 16. Working the System

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pp. 303-312

Sit-ins and demonstrations were one aspect of the growing movement but were by no means the only tools available to disability rights advocates. Some attained positions of relative power within the social services and rehabilitation systems that had such an enormous impact on the day-today lives of people with disabilities...

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Chapter 17. Institutions, Part 4

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pp. 312-323

While physically disabled activists on the West Coast were organizing the first Center for Independent Living and those in the East were working to build Disabled in Action and the ACCD, the struggle to shut down the massive state institutions for those labeled mentally ill and mentally retarded continued all across the country. The...

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Chapter 18. Self-Advocates

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pp. 324-338

Gunnar Dybwad was fond of telling an anecdote that perfectly illustrated the progression from the parents’ movement to selfadvocacy. In the 1950s,when he became its executive director, the Association for Retarded Children published a pamphlet titled...

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Chapter 19. DREDF and the 504 Trainings

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pp. 339-354

By the late 1970s what had been almost entirely separate streams of disability rights activism had begun to flow together, with a synergy few could have predicted less than a decade before. Here, again, the Center for Independent Living in Berkeley was a critical nexus, not only as a catalyst for other independent living...

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Chapter 20. Activists and Organizers, Part 3

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pp. 355-375

The 504 workshops weren’t the only place where people with disabilities were educated to be community organizers. Kitty Cone was able to bring to the disability rights movement her experience as an activist with the Socialist Workers Party and other...

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Chapter 21. Adapt

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pp. 376-396

If the independent living movement, founded by university students and graduates, represented an educated elite among Americans with disabilities, and if groups such as CAPH represented more workingclass disabled, then the rank and file of ADAPT brought to the issues of disability oppression the perspective of...

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Chapter 22. Deaf President Now!

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pp. 397-412

It would be difficult to overstate the importance of Gallaudet University to the American Deaf community. Established in Washington, DC, in 1864 (with a charter signed by Abraham Lincoln) it was and remains as of this writing the world’s only liberal arts college for people who are Deaf. Since its inception, virtually...

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Chapter 23. The Americans with Disabilities Act—“the Machinery of Change”

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pp. 413-428

The passage of the Americans with Disabilities Act of 1990 remains, as of this writing, the high-water mark of the American disability rights movement.1 Never before, and not since, has such a broad coalition of disability groups and activists united around a single issue. The goal was to pass a federal civil rights act to extend basic...

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Chapter 24. Drafting the Bill, Part 1

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pp. 429-443

Following Justin Dart’s 1966 epiphany at the children’s “rehabilitation” center in Vietnam and several years of self-examination and meditation, he and his wife Yoshiko left Japan, and their business interests, moving to Texas to become a part of the disability...

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Chapter 25. Insiders, Part 1

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pp. 444-459

People with disabilities, as has been noted before, belong to an “open minority,” that is, anyone can acquire a disability at any point in his or her life, no matter what that person’s social or economic status. This fluidity can work against the efforts of disability rights activists to organize their constituency, since it means there is generally...

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Chapter 26. Drafting the Bill, Part 2

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pp. 460-469

The first draft of the ADA, introduced into Congress by Senator Weicker and Congressman Coelho, lapsed into legislative oblivion with the end of the 1988 congressional session. It was obvious to most advocates, especially those with legislative experience, that...

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Chapter 27. Lobbying and Gathering Support

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pp. 470-480

The new draft of the ADA was submitted to both houses of Congress on May 9, 1989, and the lobbying effort on the part of the broad disability rights movement began in earnest. The first hurdle was getting it through the Senate—this happened...

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Chapter 28. Mobilizing the Community

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pp. 481-488

Civil rights legislation, when passed, is almost always a response to pressure from the public, exerted in a variety of ways. The ADA was no exception. At first, this effort, as some of the ADA point people have been candid enough to admit, was somewhat...

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Chapter 29. Experts

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pp. 489-502

The German statesman Otto von Bismark once famously declared that “laws are like sausages; it is better not to see them made.” Certainly, lawmaking can be complicated, arcane, even sordid. Deals are cut, agreements reached, favors traded, and often no one knows for certain what the final product will be until the law is passed...

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Chapter 30. Insiders, Part 2

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pp. 503-513

It is a truism of the movement that everyone is just one accident or illness away from being a person with a disability. People without disabilities therefore are often called “TABs,” meaning “temporarily able-bodied,” and the disability community itself is sometimes called “an open minority”— meaning that anyone, no matter...

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Chapter 31. Wheels of Justice and the Chapman Amendment

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pp. 514-526

It is a truism of the movement that everyone is just one accident or illness away from being a person with a disability. People without disabilities therefore are often called “TABs,” meaning “temporarily able-bodied,” and the disability community itself is sometimes called “an open minority”— meaning that anyone, no matter...

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Chapter 32. Lobbyists

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pp. 527-534

The Disability Rights Education and Defense Fund, in 1999– 2000, sponsored a series interviews, videotaped by Ward and Associates, to commemorate the tenth anniversary of the passage of the ADA. The series reunited some of the major players in the campaign to reminisce on what they had accomplished....

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Chapter 33. Senators

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pp. 535-541

The two US Senators who stayed with the ADA from beginning to end, and who have been identified more than any others with its passage and its influence in American life, are Thomas Harkin of Iowa and the late Edward M. Kennedy of Massachusetts. Like...

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Chapter 34. Victory

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pp. 542-547

In addition to powerful rhetoric and dramatic street theater, the campaign to pass the ADA also saw moments bordering on the absurd. Here Patrisha Wright recounts one of these, coming just before the final vote and the signing ceremony on the White House lawn....

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Chapter 35. Aftermath

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pp. 548-556

The twenty years after the passage of the ADA saw continued successes—as well as some significant setbacks—for the American disability rights movement. Yet nothing during those years so galvanized the community as did the struggle...

Notes

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pp. 557-598

Interview Sources

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pp. 599-602

Index

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pp. 603-260

Illustrations

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pp. G-1-G-16

Back Cover

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pp. B-1-


E-ISBN-13: 9781613761908
E-ISBN-10: 1613761902
Print-ISBN-13: 9781558499188
Print-ISBN-10: 1558499180

Page Count: 592
Illustrations: 33 b&w illus.
Publication Year: 2012

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Subject Headings

  • United States. Americans with Disabilities Act of 1990.
  • People with disabilities -- Civil rights -- United States -- History.
  • People with disabilities -- Legal status, laws, etc. -- United States -- History.
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