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What We Have Done

What We Have Done: An Oral History of the Disability Rights Movement

Fred Pelka
Copyright Date: 2012
Pages: 656
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  • Book Info
    What We Have Done
    Book Description:

    "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 ablebodied.” 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.

    eISBN: 978-1-61376-190-8
    Subjects: Sociology, History

Table of Contents

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  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Preface
    (pp. ix-xiv)
  4. List of Acronyms
    (pp. xv-xviii)
  5. Introduction
    (pp. 1-29)

    With these words attorney john w. davis, arguing before the US Supreme Court in defense of racial segregation inBrown 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. Gunnar Dybwad, as the former executive director of the...

  6. 1 Childhood
    (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 (think of Captain Hook, Doctor Strangelove, and every malevolent fictional character sporting an...

  7. 2 Institutions, Part 1
    (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, having a disability...

  8. 3 Discrimination, Part 1
    (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...

  9. 4 Institutions, Part 2
    (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.

    Nevertheless, the potential for abuse was always there, along with separation from family and segregation from the community. Before the disability rights and independent living...

  10. 5 The University of Illinois
    (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.

    The principal exception was the program for students with disabilities at the University of Illinois. Established by Timothy Nugent in 1948, the program was first housed at a...

  11. 6 Discrimination, Part 2, and Early Advocacy
    (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...

  12. 7 The Parents’ Movement
    (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 Retarded Children, which became the National Association for Retarded Children...

  13. 8 Activists and Organizers, Part 1
    (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.

    Little People of America started in 1957. Billy Barty [the founder] was the most prominent short-statured actor [in America]; he’d been in show business for years with Spike Jones, and the Harmonicats. His parents were in vaudeville;...

  14. 9 Institutions, Part 3
    (pp. 174-182)

    Robert perske and gunnar dybwad experienced the reality of the “state school and hospital” system in the 1940s, ʾ50s and ʾ60s. Dr. William Bronston carries the story into the 1970s, describing his struggle at the Willowbrook State School and Hospital on Staten Island, New York.

    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...

  15. 10 Activists and Organizers, Part 2
    (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 with the goal of delivering services, such...

  16. 11 Independent Living
    (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 theSan Mateo Timeswith the headline, “Helpless Cripple Attends U.C. Classes”), which in turn drew other students with disabilities to the campus.

    Unlike the program at the University of Illinois at Urbana-Champaign, where students with disabilities were expected...

  17. 12 The Disability Press
    (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 cross-disability 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 wereMainstream: Magazine of the Able-Disabledin southern California andThe Disability Ragin Louisville, Kentucky,...

  18. 13 The American Coalition of Citizens with Disabilities
    (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 from the design of accessible buses to the regulations implementing Section 504 of the Rehabilitation Act of 1973.

    The ACCD represented a new direction in disability politics. Traditionally, people with disabilities had been divided into various constituencies, usually based on medical criteria. This categorization applied to...

  19. Illustrations
    (pp. None)
  20. 14 The HEW Demonstrations
    (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 comment. And yet the signing of the ADA in many ways marked the culmination of the national movement which had begun thirteen years earlier. On that spring day, demonstrators staged the “HEW,” or “504,” sit-ins, to protest the Carter administration’s reluctance to move forward with regulations to enforce what was at that time the most sweeping federal civil rights protection...

  21. 15 Psychiatric Survivors
    (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 than does a diagnosis of diabetes or heart disease.”¹ Indeed, many advocates reject the entire concept of “mental illness” as socially constructed and having no grounding in any demonstrable physical illness or pathology. These advocates contend that those individuals living through “altered” or “extreme states” are in fact responding to extreme...

  22. 16 Working the System
    (pp. 303-311)

    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-to-day lives of people with disabilities and sought to use their growing influence to empower their constituents. Perhaps the most notable example of such an advocate/administrator was Ed Roberts, who in 1962 had been deemed “infeasible” as a client by the California Department of Vocational Rehabilitation and in 1975 was appointed director of that agency by...

  23. 17 Institutions, Part 4
    (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 “right-to-education” litigation filed by the parents’ movement in the early 1970s was followed by lawsuits designed to force states to provide community services to people released from the institutions, who had suffered the most horrific neglect and abuse.

    Among the most famous of the deinstitutionalization struggles...

  24. 18 Self-Advocates
    (pp. 324-338)

    Gunnar dybwad was fond of telling an anecdote that perfectly illustrated the progression from the parents’ movement to self-advocacy. In the 1950s,when he became its executive director, the Association for Retarded Children published a pamphlet titledWe Speak for Them—“them” being people, particularly children, labeled “mentally retarded.” Thirty years later a group of those now-grown children formed an organization called Speaking for Ourselves—one of the many groups that comprised the burgeoning “self-advocates” movement of the 1970s and 1980s.¹

    “It [was] a most natural thing,” Dybwad remarked. “Originally, the persons with mental retardation were not only young, but the...

  25. 19 DREDF and the 504 Trainings
    (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 advocates across the country but also in founding what was to become the nation’s preeminent cross-disability legal practice and public policy think tank.

    Activists at Berkeley in the mid-1970s had already started the Disabled Paralegal Advocacy Program (DPAP)—an office within the CIL staffed almost entirely...

  26. 20 Activists and Organizers, Part 3
    (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 groups on the Left. Other leaders, such as Wade Blank and Michael Auberger, received their political education through religious groups, including the social justice wing of the Catholic church.

    And as John Lancaster demonstrates, not all aspiring activists had to be prompted to feel entitled to their civil rights or to show anger at how society had treated them.


  27. 21 ADAPT
    (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 working-class disabled, then the rank and file of ADAPT brought to the issues of disability oppression the perspective of those at the bottom of the educational, social, and economic ladder. As ADAPT organizer Mark Johnson says, many ADAPT members “can’t read or write, many have had little or no education at all.” Many—and this was certainly true of the original members of the mid-1980s—are alums of some of the nation’s worst...

  28. 22 Deaf President Now!
    (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 every Deaf political leader of note has received his or her college education at Gallaudet, and virtually every Deaf scholar has at one time or another studied or taught there. After the advent of oralism¹ in the 1880s, Gallaudet remained the most visible and prestigious stronghold of Deaf...

  29. 23 The Americans with Disabilities Act—“The Machinery of Change”
    (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 protections against discrimination, and thus ensure equality of access to employment and the public arena, to all Americans with disabilities. It might have sounded a simple-enough goal, but writing a bill that would do all this while garnering the support necessary to pass...

  30. 24 Drafting the Bill, Part 1
    (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 rights movement there. The Darts, however, did not leave behind their background, most especially the Dart family’s Republican connections. With the election of Ronald Reagan in 1980, the Darts were poised to become leaders in the national disability rights movement.

    We did a long-range policy for Texas which was very radical, in that we did not confine ourselves to policy...

  31. 25 Insiders, Part 1
    (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 no shared culture or consciousness implicit in the simple fact of having a disability. It can also, however, be an advantage, as certain individuals with disabilities have access to centers of political influence that are usually unavailable to people in other oppressed...

  32. 26 Drafting the Bill, Part 2
    (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 a new version needed to be written. And so, in early 1989, there began a series of meetings between advocates such as Patrisha Wright, Arlene Mayerson, and Bob Funk (who had left DREDF to take a position in the White House), John Wodatch, a policy expert at the US Department of Justice, and legislative aides Robert Silverstein (staff director and chief...

  33. 27 Lobbying and Gathering Support
    (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 on the night of September 7–8, 1989, with a vote of 76 to 8.¹

    Steering the bill through the House was more difficult. A bill as complex and touching on so many facets of American life had to be sorted through by no less than four separate House committees and six subcommittees, with the potential...

  34. 28 Mobilizing the Community
    (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 sketchy, more “smoke and mirrors” than an actual, engaged constituency. But as time went on, and the message spread either through personal meetings such as those organized by Justin Dart and the Owen task force, through the disability press, or by simple word of mouth, more and more people became engaged and then committed to...

  35. 29 Experts
    (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 and enacted. The ADA was no exception. Indeed, large parts of it were ground out, sentence by sentence, in negotiations the details of which are for the most part recorded only in the memories of those who were present.

    One of the experts the community...

  36. 30 Insiders, Part 2
    (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 what their race, gender, class, ethnicity, or politics—can become a member. While in some respects this might be a political weakness, in that it makes it that much more difficult for organizers to bring this disparate constituency together, it also means that the movement has been able to find...

  37. 31 Wheels of Justice and the Chapman Amendment
    (pp. 514-526)

    By spring 1990 disability rights advocates and their allies had shepherded the ADA past its first hurdles in the Senate. After hearings in the Senate Committee on Labor and Human Resources and negotiations between the Senate, the White House, and disability advocates, the full Senate passed its own version of the ADA—S. 933—by a vote of 76–8 on September 7, 1989.

    Passage in the House would prove more difficult. As has been mentioned, the bill had to be heard—and approved—by a variety of separate committees and subcommittees, including subcommittees on Select Education and Employment Opportunities,...

  38. 32 Lobbyists, a Conversation
    (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.

    Paul Marchand, whose account as an activist in the parents’ movement is featured in chapter 7, was the chairman of the Consortium for Citizens with Disabilities (CCD), which he described as “the Washington-based coalition of national disability groups working together” to improve the lives “of our constituency.” Karen Peltz Strauss, featured in...

  39. 33 Senators
    (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 the original sponsors, Lowell Weicker in the Senate and Tony Coelho in the House, both had direct and intimate involvement with disability.

    Thomas Richard Harkin was born in November 1939, in Cummings, Iowa. His father was a coal miner; his mother died when he was ten years old. Harkin graduated from Iowa State University in...

  40. 34 Victory
    (pp. 542-547)

    With the chapman amendment defeated, the ada now rolled toward passage. There was, however, one last problem that had to be resolved before both houses could vote on the final bill.

    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.

    There was another amendment put on the floor by our friend Senator Hatch, which led to the most Fellini-esque scene I have ever had in...

  41. 35 Aftermath
    (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 to pass the ADA. Nor did any coalition in those following decades approach the broad, bipartisan, cross-disability alliance that had shepherded the act through Congress to its final signature on the White House lawn.

    In fact, Justin Dart’s fears were to some degree realized. An intense backlash did occur. Critics of the act fulminated in the media, and adverse federal and Supreme Court...

  42. Notes
    (pp. 557-598)
  43. Interview Sources
    (pp. 599-602)
  44. Index
    (pp. 603-622)
  45. Back Matter
    (pp. 623-623)