Growth of the Disability Rights Movement
As Congress and HEW in Washington were writing civil rights language into federal laws and regulations, important work within the disability community was taking place throughout the nation. A disability rights movement was being born. It was not the first time people had advocated for the rights of persons with disabilities, but the movement that formed in the 1970s was uniquely consumer-driven. Not all constituencies of the disability community supported the effort to view disability as a civil rights issue with the same vigor. Indeed, great obstacles had to be overcome to establish a meaningful disability rights movement.
Although the disability rights movement developed in the tradition of the 1960s social movements, a number of factors made the rise of this movement much more difficult. “Disability” as a class did not share the same cohesive forces manifest with race and gender. In the 1950s and 1960s, persons who were blind, paralyzed, or mentally ill did not naturally share a common identity. In fact, persons with different disabilities were often in conflict over limited government resources. Moreover, disability transcended and intersected such categories as race, gender, and class that often provided a basis for affinity and identity. Persons with disabilities generally did not inhabit the same physical communities that helped fuel the civil rights movement. And segregation for persons with disability meant not only separation from mainstream society, but also isolation from each other.
The disability rights movement began to take shape during the 1970s in spite of these obstacles. It is difficult, however, to explain its origins neatly, for it derived from multiple sources. While the movement drew on various cultural currents to achieve its ends, it grew primarily out of personal experiences with disabilities and the recognition that current quality of life was inadequate. Even though most persons within the disability community shared similar goals—such as education, jobs, dignity, access, and equal participation—the wide variety of disabilities meant that subgroups of the disability community did not always seek the same objectives. The activities of one group were not only often unknown to others, at times they ran counter to the efforts of others.
One key source of the disability rights movement was the independent living movement. Early threads of the movement can be seen as early as the 1950s, when people such as Mary Switzer and Gini Laurie began to realize that disability services could be cheaper and more effective when provided through personal attendant care at home rather than in institutions. In the 1960s, the independent living movement gained momentum predominantly through the influence of college students. In 1962, for example, four students with disabilities at the University of Illinois at Champaign-Urbana helped start the movement by leaving an isolated facility to reside near campus in a home modified for accessibility. They then began working with the University to improve campus accessibility and gain increased control over their own lives.
A similar and more visible effort took place the same year, when Ed Roberts, who was paralyzed from polio, entered the University of California at Berkeley.31 The school housed him in the third floor of Cowell Hospital, where he was aided by friends and attendants with eating and dressing. Roberts thrived. He earned not only his undergraduate degree, but also a masters degree in political science. News of his success spread, and by 1967 twelve students with major disabilities joined him in Cowell. These students, who called themselves the “Rolling Quads,” began holding brainstorming sessions about ways they could increase their self-sufficiency. Rather than be directed by, and dependent on, bureaucrats, they wanted to be able to secure their own funding, find their own jobs, and make their own decisions.
To promote this they secured a grant from HEW, in 1970, to finance a Physically Disabled Students’ Program (PDSP). The goal of the program was independent living. The ramped office provided access to residential counselors, tips on where and how to obtain personal attendants, and a wheelchair repair shop. To meet the growing requests for service from nonstudents, PDSP leaders joined to incorporate the Berkeley Center for Independent Living in 1972. As one journalist observed: “It would be run by people with disabilities; approach their problems as social issues; work with a broad range of disabilities; and make integration into the community its chief goal. Independence was measured by an individual’s ability to make his own decisions and the availability of the assistance necessary—from attendants to accessible housing—to have such control."32
Shortly after the Berkeley center began its operation, other programs opened their doors: in Boston, Massachusetts; Houston, Texas; Columbus, Ohio; and Lansing, Michigan. The movement also gained support in Congress. The original Rehabilitation Act of 1972 included an Independent Living Program to help promote independent living services around the country. Although it was eliminated as part of the compromise with President Nixon in 1973, the Carter administration afforded a new opportunity. The program was established as part of the 1978 Amendments to the Rehabilitation Act and became known as the Title VII program. Despite its very limited funding, the Title VII program breathed life into the incipient independent living movement. It helped establish standards for independent living programs that ensured a high level of consumer control and the provision of core services. In the ensuing decade, the number of independent living centers around the country grew exponentially.
The independent living movement represented nothing less than a radical transformation in thinking about disability policy. One might call it a paradigm shift.33 Prior to the 1970s, disability was viewed primarily as a medical issue. Persons with disabilities were considered “sick” or “impaired” and in need of a cure. They were patients who required experts’ instructions about how to “get better.” The problem of disability was seen to reside in the individual, who must be “rehabilitated” and returned to gainful employment.
Advocates of independent living saw things differently. Infused with a rights mentality sparked by the civil rights, women’s, and anti-war movements, these individuals wanted to shed the medical model that cast them as passive recipients of professional care. Instead they asserted their rightful place in society. They pursued mechanisms for self-help rather than relying predominantly on authorities. They advocated a consumer spirit that established the role of the consumer as the decision maker and people with disabilities as the experts. And they rejected the idea that persons with disabilities, even persons with severe disabilities, should be isolated in custodial institutions. Instead they promoted community-based living. Moreover, advocates of independent living hoped to improve the lives of people with disabilities by promoting cross disability interaction. People with diverse disabilities could help each other through peer counseling and present a stronger voice for policy change.
According to the philosophy of independent living, the problem of “disability” did not reside simply in the individual, but also in society, in the rehabilitation process, the physical environment, and the mechanisms of social policy. The full potential of persons with disabilities therefore could not be realized simply through trying to “rehabilitate” the individual. “Society” also had to be “rehabilitated,” by making the physical environment more accessible and destroying the attitudes that rendered persons with disabilities as helpless victims in need of charity.
In this respect, the independent living movement was strikingly analogous to previous movements for civil rights. In the early twentieth century, people widely talked of the “race problem,” referring to the presence of blacks in America. The locus of the problem was supposedly the individual black person and his or her supposed inferiority. With the civil rights movement came a new social critique. The problem was not the black person, but pervasive racism. The American economy and social structures tended to exclude blacks, rather than incorporate them as valued citizens. What was needed, therefore, was a transformation of the nature of America’s institutions—through legal measures and a gradual erosion of prejudice. Feminists experienced similar problems, as the social and economic frameworks functioned to limit their opportunities. To give women their rightful place in society, fundamental structural change had to occur. And so it was with the nascent disability rights movement. Advocates argued that people with disabilities should not have to accommodate themselves to a society designed to exclude them. Instead they encouraged disabled persons to assert their right to join society and promoted reforms to facilitate participation.
This social critique, however, was not about subverting core American values. Rather, it was about partaking of the American ideology of liberty and opportunity. Persons with disabilities had the same aspirations as other Americans. This mentality also challenged disability professionals. Many disability rights advocates viewed these professionals as accomplices in discrimination because they treated disabled persons as “sick” patients. In addition, advocates thought some special interest organizations contributed to infantile notions of persons with disabilities by appealing to charity for “helpless” children.
The rise of independent living centers was a crucial aspect of the disability rights movement. But other contributions were also significant: for example, those concerning developmental disabilities and mental illness. Organizations such as the ARC, which endeavored to assist persons with developmental disabilities in living better lives, focused especially on two issues: institutionalization and education. Advocates found appalling conditions and subhuman standards in many institutions for people with disabilities. In addition to exploring ways to develop community based alternatives, they promoted institutional reform. In the early 1970s, the ARC collaborated with a group of Washington-based organizations to pass a law to protect the rights and treatment of persons with developmental disabilities in institutions. By 1975, under the leadership of Paul Marchand of the ARC, the group of organizations formally identified themselves as the Consortium for Citizens with Developmental Disabilities (CCDD). Their efforts culminated in the Developmental Disabilities Assistance and Bill of Rights Act of 1975, which promoted respect for the basic human rights of institutionalized persons. Congress built on this Act in 1980 with the Civil Rights of Institutionalized Persons Act, which gave the Federal Government authority to sue local operators of institutions that consistently violated the constitutional rights of persons in prisons, mental hospitals, and other institutions.
CCDD was also interested in improving educational prospects for persons with developmental disabilities. In this regard they shared the interests of a variety of disability organizations, whose collective efforts assisted in passage of the Education for all Handicapped Children Act of 1975 (more commonly known as Public Law 94-142). This act, supported by persons with disabilities across the spectrum, was a milestone. It had the crucial effect of raising a generation of persons with disabilities who expected to attain a rightful place in American society, not isolation and segregation. This generation would compel its teachers and peers to develop the same understanding. A decade later, it would help mold public opinion about the ADA.
In addition to centers for independent living and disability specific organizations, other important elements of the growing disability rights movement included legal action centers and organizations devoted to political protest. For example, as an outgrowth of a legal activist project in law school, Robert Burgdorf and several other students at the University of Notre Dame established the National Center for Law and the Handicapped (NCLH). With support from the university, the American Bar Association, the ARC, and HEW, NCLH pursued cases around the country to help persons with disabilities. Their first work was based on due process and equal protection law, but Section 504 provided a new and stronger legal foundation. It “seemed like manna from heaven,” said Burgdorf.34 Other legal centers active in promoting the rights of persons with disabilities were the Public Interest Law Center of Philadelphia (PILCOP) and INSPIRE of Georgetown University.
While these organizations concentrated their efforts on the legal front, others focused exclusively on political activism. In 1970, Judy Heumann, who used a wheelchair because of polio, founded Disabled in Action (DIA). It developed out of publicity generated by Heumann’s lawsuit against the New York City Board of Education, which had denied her a license to teach. Heumann and such friends as Denise McQuade, Frita Tankus, and Larry Weisman decided to use the case as a vehicle to heighten attention to disability issues in general. As people with disabilities and their families read and saw the coverage of Heumann’s case, many began calling her about their own experiences: a cry for broader, collective action. Heumann and others felt that existing organizations were not sufficiently politically active: DIA would thus be overtly and exclusively political. It “was made up of young disabled dreamers who believed that fighting for their rights was their obligation,” said Heumann. Two more DIA organizations soon formed in Philadelphia and Baltimore. They were all cross-disability in focus and engaged such issues as transportation, architectural accessibility, television telethons, sheltered workshops, and institutionalization. In 1972, Heumann led DIA to protest President Nixon’s veto of the Rehabilitation Act, culminating with two separate occupations of Nixon’s headquarters just days before the election.35 DIA was also instrumental in protesting HEW’s delay in issuing the Section 504 regulations.
The experiences with political protest, and especially the 1977 demonstrations, led Robert Funk, Mary Lou Breslin, Pat Wright, and Judy Heumann, who were in varying ways associated with the independent living center in Berkeley, to focus on the absence of a national legal defense fund for persons with disabilities. As a partial solution, Heumann helped found the Disability Law Resource Center (DLRC) as part of the Berkeley Center for Independent Living. The purpose of DLRC was to provide legal services to individuals with disabilities: studies had shown that persons with disabilities were not adequately served by state legal services. Robert Funk and Paul Silver were among its leading attorneys.
To help manage the legal affairs of the organization, Funk and Silver hired a young attorney named Arlene Mayerson. Interestingly, Mayerson had no prior experience in disability law; she was trained in civil rights law. But Funk and Silver selected her over scores of applicants, including persons who recounted stories of working with disabled children in camps. “They wanted someone who didn’t have a lot of preconceived notions about what was best for people with disabilities,” Mayerson explained. “They wanted someone who thought in terms of civil rights and whom they could mold in the disability rights movement’s image."36 At DLRC Mayerson addressed any issue people brought to her—being kicked out by a landlord, getting fired, or being denied entrance to a restaurant—with whatever legal means were available at the time.
DLRC was only a two-year model program. As funding approached its end, Funk, Breslin, and Wright decided that a more comprehensive and long-lasting program was needed: a national legal defense fund in the tradition of those for minorities and women. Consequently, in 1980, they created and opened a new organization called DREDF, the Disability Rights Education and Defense Fund. Wright referred to Funk as “the architect” of the operation, the one who was responsible for its stable foundation. Breslin provided the “vision” and excelled at management. Wright described herself as the “political strategist” and the “brawn” of the organization. Mayerson joined these three and represented “the brains” behind the legal operation. This blend of talent, said Wright, was the key to DREDF’s success.37
Through DREDF, Funk, Wright, Breslin, and Mayerson could advocate a national legislative and law reform agenda to provide more leverage for meeting the concerns of persons with disabilities. DREDF had two main goals. The first was “to make disability a real true partner in the civil rights community nationally."38 Up until that time, although many persons were increasingly demanding their own rights, neither the civil rights community nor most disability interest groups viewed disability rights primarily as civil rights. Rather, most groups focused narrowly on their own missions shaped by particular diagnoses and impairments. DREDF hoped to change that. The second goal was to pursue law reform that would provide persons with disabilities legal protections equivalent to those available to other minorities and women.
As a first step toward meeting these goals, DREDF leaders sponsored a meeting in San Francisco in the fall of 1980. They invited prominent strategists, organizers, and attorneys from other civil rights causes. The purpose of the meeting was twofold. First, DREDF wanted to educate the civil rights community about disability. They prepared a briefing book that laid out how the education, employment, and voting problems faced by persons with disabilities were similar to those confronting racial minorities and women. The second objective was to provide DREDF with an opportunity to learn from the successes of other civil rights causes and make contacts so that DREDF and other disability organizations could become full partners in the civil rights community.
Funk, Wright, Breslin, and Mayerson learned an important lesson from the meeting. If DREDF were to achieve its goal of being a truly national legal defense fund, it had to have a presence in Washington. Thus, in 1981, they set up an office in the nation’s capital. There they encountered Evan Kemp, Jr., who, since 1980, ran the Disability Rights Center (DRC)—an organization sponsored by Ralph Nader. Although Kemp worked out of just two small rooms, he donated one to DREDF. Kemp had begun making his own imprint on the disability rights landscape. Since 1976, first under the direction of Deborah Kaplan and then under Kemp, DRC focused its efforts on eliminating employment discrimination by disseminating information and lobbying to retain programs. It also educated the general public about the disability rights movement by submitting articles to newspapers and magazines, and appearing on television shows and radio spots.
One of Kemp’s favorite campaigns was assaulting the image of “pity” that dominated public portrayals of persons with disabilities. He focused especially on the Jerry Lewis Muscular Dystrophy Association Telethon, which, Kemp argued, contributed to prejudice against persons with disabilities. “These prejudices create stereotypes that offend our self-respect, harm our efforts to live independent lives and segregate us from the mainstream of society,” Kemp wrote. Moreover, the telethon reinforced infantile notions of persons with disabilities by showing them as dependent children. It lent credibility to public images of disabled persons as “helpless.” It also underscored the notion of persons with disabilities as “sick” and in need of cure. “If it is truly to help,” said Kemp, “the telethon must show disabled people working, raising families and generally sharing in community life,” and promote independent living programs rather than servile dependence.39 Kemp also defended efforts to integrate persons with disabilities through barrier removal by arguing how it would benefit all Americans: for example, bicyclists and stroller-users taking advantage of curb cuts and subway elevators.40
After joining Kemp in Washington, Wright and Mayerson began introducing themselves to people and groups around Washington “to say we’re here to do one thing, and that’s civil rights."41 The early 1980s, however, were not exactly an auspicious time to be heading to Washington to promote civil rights. President Ronald Reagan entered office with the intention of minimizing federal regulations and reducing government’s role in society, not establishing new rights and more regulations. This placed most persons in the disability movement in a defensive posture, trying to hold the territory already secured rather than launching new expeditions. But DREDF had other things in mind.
One of the most important contacts DREDF made at the 1980 San Francisco meeting was with Ralph Neas, Director of the Leadership Conference on Civil Rights (LCCR). LCCR was the legislative arm of the civil rights movement and coordinated the legislative side of all civil rights initiatives. It worked by the consensus of all conference constituencies: for example, African Americans and women. DREDF believed that any effective campaign to advance the civil rights of persons with disabilities would need the support of LCCR, which carried over thirty years of experience in civil rights, had extensive relationships in Congress, and had firmly established its credibility. Neas described Wright and Mayerson as “thinking five or six years down the line” in their solicitation of LCCR at the conference. And it was at the 1980 meeting, he said, that the strategy for achieving comprehensive civil rights for persons with disabilities was first articulated.42
DREDF was not the first disability organization to join with LCCR. PVA and ACB, for example, had been long-time members of LCCR. DREDF was unique, however, in seeking a tight alliance with the civil rights community as its central mission. Although Wright and Mayerson established a link with Neas and the LCCR as a result of the San Francisco conference, and Wright eventually represented DREDF on the LCCR Executive Board, they did not think they could count on LCCR’s support immediately. First they had to establish their own credibility and get involved in LCCR campaigns as much as any other group. Over the next several years they did precisely that.
31. Shapiro, No Pity, pp. 41–58.
32. Ibid., pp. 53–54.
33. The idea of a paradigm shift is developed more fully in Gerben DeJong, “Independent Living,” pp. 442–44.
34. Robert Burgdorf, interview, February 19, 1997.
35. Shapiro, No Pity, pp. 55–58.
36. Arlene Mayerson, interview, October 13, 1993.
37. Wright, interview, November 19, 1993; Wright, telephone conversation with author, April 30, 1997.
38. Mayerson, interview, October 13, 1993.
39. Evan Kemp, Jr., “Aiding the Disabled: No Pity, Please,” The New York Times, September 3, 1981. See also Robert Allen Bernstein, “Do-Good Pitythons,” The New York Times, September 6, 1983.
40. Evan J. Kemp, Jr., “Welcome Side Effects of Helping the Disabled,” The New York Times, January 29, 1982.
41. Mayerson, interview, October 13, 1993.
42. Ralph Neas, interview, January 21, 1994.
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