Equality of Opportunity: The Making of the Americans with Disabilities Act

Mobilizing the Disability Community

In 1988, the top priorities for the disability community were the Civil Rights Restoration Act, which became public law on March 22, 1988, and the Fair Housing Amendments Act, enacted on September 13, 1988. The ADA would not get the spotlight until 1989. However, ADA sponsors and the disability community used 1988 as an opportunity to publicize the act, mobilize grass roots support, solicit the endorsement of presidential candidates, enlist congressional cosponsors, and establish the act as a top priority for the next Congress.

The political sophistication attained by the disability community during the 1980s enabled ADA advocates to pursue a multi-pronged strategy to meet its objectives. A Washington-based ADA coalition coordinated these activities in conjunction with the bill’s congressional sponsors. Although this coalition did not fully form until 1989, it began to take shape even before the bill’s introduction in April, 1988. Describing the emerging leadership is extremely difficult, however, because it was not highly structured. There was no body of voting members that elected officials to formally-defined job positions. There were no department heads. Rather, individuals and a variety of organizations formed a loose (though united) ADA coalition. To facilitate communications, the ADA coalition conducted many of its activities “under the auspices” of the well-established Consortium for Citizens with Disabilities (CCD).⁵

Paul Marchand, Director of the Governmental Affairs Office for the Association for Retarded Citizens (ARC), had founded CCD’s predecessor, CCDD, in the early 1970s to unite federal advocacy efforts of the disability community. By 1988, the consortium represented dozens of Washington-based organizations. Additional groups enlisted their support to CCD’s campaign to pass the ADA. CCD’s operations were carried out through multiple task forces, including the Civil Rights Task Force, which from 1988 to 1990 focused almost exclusively on the ADA. Pat Wright of the Disability Rights Education and Defense Fund (DREDF), Liz Savage of the Epilepsy Foundation of America (EFA), and Curt Decker of the National Association of Protection and Advocacy Systems (NAPAS) were the Civil Rights Task Force Co-chairs. The ADA coalition used the task force as its headquarters and CCD stationary for much of its correspondence. Although most of the ADA coalition leaders were from organizations who were members of CCD, it would be misleading to refer to CCD and the ADA coalition interchangeably, since key participants also came from outside CCD. This applied especially to people with disabilities representing the grass roots: ADAPT and NCIL, for example. And Dart, who was a full-fledged supporter and close ally of CCD, nonetheless did not officially represent a CCD member organization: he served the ADA coalition as a voice of the people.

The ADA coalition organized its efforts according to four major functions: overall strategy development; education and lobbying; grass roots mobilization; and legal writing and analysis. And it creatively exploited all available resources to accomplish the job, varying the approach to meet changing circumstances. For the most part, participants tended to focus on one of these four areas, but there was overlap. At the core was a handful of leaders who were most responsible for guiding the overall effort.

While many people contributed to developing the overarching strategy for passing the ADA, two persons in particular focused their efforts on this area: Pat Wright and Ralph Neas. Wright’s leadership during the ADA’s passage eventually earned her the nickname “The General.” She had attended medical school in the 1960s, but, after a progressive eye disease left her legally blind, she was forced to leave the profession. Temporarily derailed, she found a new interest in assisting persons with disabilities move from institutions to community-based living and gained an intimate knowledge of how legal technicalities affected the lives of persons with disabilities. Wright made her first major inroads to the disability rights movement at the San Francisco sit-in of April, 1977, where she had served as a personal assistant to Judy Heumann and demonstrated her negotiation skills in working with the guards. In her decade of work with DREDF, Wright had refined her extraordinary and tough negotiating techniques.

“She has [more] hutzpah than anyone I’ve ever met,” said Eastern Paralyzed Veterans of America (EPVA) attorney Jim Weisman, who worked with her closely during the ADA’s passage.⁶ Wright certainly made her presence known. Her rejection of standard Washington attire stood out among beltway veterans; one journalist said she appeared as if she had arrived directly from the 1960s Berkeley campus.⁷ But Wright was so widely respected in Congress and the White House that her apparel and colorful vocabulary were beyond reproach. “She really is brassy,” said Weisman, “but she got it done."⁸ Indeed, the ADA’s success was due in no small part to Wright’s efforts, though some perceived Wright as a “loner” because she took advantage of her contacts and her capabilities to negotiate unilaterally in high-pressured situations.⁹

Neas, an attorney and Director of the Leadership Conference on Civil Rights (LCCR), brought to the ADA coalition unparalleled experience in civil rights legislation. LCCR carried more than three decades of civil rights advocacy, and was “the broadest, the largest, and oldest coalition in the country,” with over 185 organizations and their 60 million dues-paying members.¹⁰ It had either assisted or led the coordination of every civil rights bill since 1957. As Executive Director of the LCCR since 1981, Neas led several civil rights campaigns, including the Voting Accessibility for the Elderly and Handicapped Act, the Civil Rights Restoration Act, and the Fair Housing Amendments Act. (In 1989, he would begin work on what became the Civil Rights Act of 1991.) In the spring of 1988, Wright approached Neas and the Executive Council to obtain an endorsement of the concept of the ADA. She stressed that the disability community would work with Congress to develop a viable bill after the 1988 election; the important consideration was to lend credibility to the general principles. DREDF’s efforts during the 1980s paid off, and LCCR joined the disability community as an indispensable ally. Although Neas did not join the strategy team full-time until he finished with the Civil Rights Restoration Act and Fair Housing Amendments Act, the ADA would become one of his top priorities in January, 1989.

While Wright and Neas were the principal strategists, most strategy development did not take place behind closed doors. For example, Savage and Marchand (who focused on lobbying in Washington), Justin Dart and Marilyn Golden (who focused on the grass roots), and Mayerson and Feldblum (who directed legal strategy) all were regular participants in shaping strategy. Moreover, important strategic contributions came from people such as Mary Lou Breslin of DREDF; National Council on Disability (NCD) Chairperson Sandra Parrino; Lex Frieden of The Institute for Rehabilitation and Research (TIRR) and former NCD Executive Director; Paul Hearne of the Dole Foundation; and Jay Rochlin, Executive Director of the President’s Committee on the Employment of People with Disabilities. These individuals provided additional contacts in Congress and the administration and also contributed specific statutory recommendations.¹¹ Such organizations as NCIL and ADAPT brought the concerns of consumer-directed organizations to the table. Furthermore, when the CCD Civil Rights Task Force began holding weekly strategy meetings in 1989, out-of-town visitors were active participants.

Crucial for implementation of strategy was the Washington-based education and lobbying effort. In this respect, Wright worked especially closely with Savage— attorney, Assistant Director for Government Affairs of EFA, and Co-chair of the CCD Civil Rights Task Force. Wright and Savage had met in 1985, around the time Savage joined EFA. Together they worked on such landmark civil rights cases as the Handicapped Children’s Protection Act, Civil Rights Restoration Act, and Fair Housing Amendments Act. Wright and Savage’s strengths complemented one another. Whereas Wright’s expertise was in strategy and negotiating, Savage’s strength was lobbying. This experience and relationship with Wright naturally evolved into the role of coordinating lobbying activities for the ADA coalition. If Wright was the “General,” Savage was one of the principal “Field Commanders.”

Marchand also played a key role in the education and lobbying effort. As Director of the Governmental Affairs Office of the ARC, Marchand brought to the ADA coalition the resources of one of the nation’s largest disability organizations: 1,200 chapters nationwide, and an Action Alert Network that monitored congressional activities and mustered thousands of letters and phone calls. Advocates for persons with developmental disabilities were a well-established and widely-respected presence in Washington, which effectively positioned Marchand for ADA leadership. Moreover, as Chairman of CCD he had an effective platform for working with members of Congress and the administration.

To aid in the crucial task of educating members of Congress about disability and lobbying them to be ADA cosponsors, which began even before the ADA was first introduced, the ADA coalition relied on a number of lobbying “captains.” These included Becky Ogle of the Spina Bifida Association, Bob Williams of the United Cerebral Palsy Associations (UCPA), Denise Rozell of the National Association of Developmental Disabilities Councils (NADDC), Tom Sheridan of the AIDS Action Council, Kathy Megivern of the Association for Education and Rehabilitation of the Blind and Visually Handicapped, Fred Cowell of the Paralyzed Veterans of America (PVA), David Capozzi of the National Easter Seal Society (NESS), Caren Friedman of the Human Rights Campaign Fund, and Curt Decker of the National Association of Protection and Advocacy Systems (NAPAS). These lobbyists in turn worked with members of such organizations as CCD, LCCR, NCIL, the National Organization Responding to AIDS (NORA), and ADAPT. Together they organized lobbying teams to visit senators’ and congressmen’s offices, which supplemented the efforts of congressional sponsors.

Although lobbying was important, successful passage of the ADA could not be achieved by efforts only within the Washington beltway. Well before the ADA entered Congress, the ADA coalition concluded that success was dependent on convincing members of Congress, the executive branch, and the general public that the difficulties faced by persons with disabilities were a genuine national problem. The ADA could not be viewed as the brain-child of a coterie of think-tank intellects; it had to be correctly understood as an outgrowth of the pervasive experience of discrimination. Victory would be won through the efforts of thousands of advocates across the nation who could humanize and personalize the issues, not by privately wrestling with legal technicalities. NCD had begun this process through “consumer forums,” Justin Dart’s public forums, Toward Independence, and The ICD Survey.¹² After the ADA was introduced, Marilyn Golden of DREDF and Justin Dart led these efforts. In 1988, the primary goal of the ADA coalition was to get an army ready. In 1989 and 1990, with a communication system in place, Dart and Golden would issue a nationwide call to arms.

There were three main objectives for grass roots mobilization. The first was to educate persons with disabilities about the ADA to prepare them for action. An important part of this process was uniting the fragmented disability community by centering the focus on a common cause. The second was to accumulate evidence of discrimination. This came not only through the standard form of congressional testimony, but also through the novel approach of soliciting “discrimination diaries.” In addition to providing evidence for Congress, preparing these documents would prompt people throughout the country to organize diary parties and foster the empowerment that comes from numbers. Over time, many persons with disabilities had internalized oppression, taken complete responsibility for their situations, and thus turned their backs to discrimination. By writing down their experiences, however, people could face discrimination, recognize society’s role, get “mad as hell,” and lose patience with the circumstances to which they had become acclimated.¹³ Third, grass roots mobilization would provide a means to apply pressure on members of Congress and the president. Not only did persons with disabilities write letters, they also joined the lobbying campaign by paying for trips to Washington out of their own pockets.

Golden drew on the extensive contacts she had made through administering DREDF disability rights training projects. In the 1980s, DREDF had brought thousands of persons with disabilities to Berkeley to educate them in their rights and teach them how to mobilize communities for action. These persons in turn shared their knowledge with their local communities. Golden supplemented this network by establishing ties to other organizations, such as NCIL, and the ARC, and their grass roots links. The computer network DIMENET was another avenue for mobilizing people around the country.

As a result of his public forums, Dart had become famous among people with disabilities around the country, indeed he had become somewhat of a cultural icon for much of the disability community. As he toured the country, Dart kept lists of all the people who attended, which produced a massive list of people he could later contact for political action. And by spending years touring the country, people in the grass roots felt as if they were part of the ADA’s development rather than objects of it. They were thus more willing and eager to join Dart when the time came for action. Dart simply had “no equal” in getting people mobilized, said Maria Cuprill, a staff member of the House Subcommittee on Select Education.¹⁴

Members of Congress also recognized the need to demonstrate broad-based support for the ADA. Congressman Major R. Owens (D-NY), in particular, devoted considerable energy to empowering the grass roots. Although Owens was a relative newcomer to disability policy, first encountering it after becoming a member of the House Education and Labor Committee in 1983, he brought additional assets. He had experienced the 1960s civil rights movement first-hand, including service as chairman of the Brooklyn chapter of the Congress on Racial Equality (CORE)—an organization central to the movement’s success. He had also developed a passion for fostering citizen participation. In 1987, Owens became Chairman of the House Subcommittee on Select Education, which had jurisdiction over many disability issues. When he first learned about the ADA prior to its introduction, he thought of it primarily as a civil rights issue: carrying forward the banner for civil rights from African Americans to women to people with disabilities. Owens wanted to do whatever he could to help energize people with disabilities.

Accordingly, on May 2, 1988, less than a week after the ADA’s introduction, Congressman Owens created the Task Force on the Rights and Empowerment of Americans with Disabilities. The group’s purpose was twofold: to present to Congress, the executive branch, and the general public evidence of disability discrimination, and to make recommendations. Owens appointed Dart to be the Chairperson. Dart had testified before Owens’s subcommittee as Commissioner of the Rehabilitation Services Administration (RSA), which was part of the Department of Education. Owens thereby discovered that Dart shared his philosophy that disability rights were primarily civil rights. But, following his critical testimony regarding the Department of Education and its paternalistic attitudes toward and policies for people with disabilities, Dart resigned as RSA Commissioner. Owens saw his task force as an opportunity for Dart to continue his mission of achieving civil rights for people with disabilities. Owens named Elizabeth Boggs, of the ARC, as Co-chair with Dart. And Lex Frieden assumed the reins as Coordinator. Thirty-five others from the disability community were selected as task force members.*

Dart immediately began organizing another series of public forums. As always, Dart’s wife Yoshiko was crucial for the management and execution of Dart’s activities, which they paid for primarily with their own funds. Justin met Yoshiko in Japan, where Justin worked as president of Japan Tupperware. Yoshiko was a remarkably successful sales representative for the company. In addition to managing his company, which met with great success, Justin used his position as president to assist people with disabilities in attaining better livelihoods. For example, he sponsored sales campaigns in which the company and employees donated profits to buy wheelchairs for persons with disabilities. Justin also provided employment opportunities to boys who used wheelchairs. And Yoshiko took an active role in training them for work and assisting them in building greater self-confidence as productive citizens. Yoshiko’s success, capabilities, and interest in disability attracted Justin’s attention, who ultimately hired her as an executive assistant. They married in 1968 and became partners in championing the rights of persons with disabilities.

Between 1988 and 1990 Justin Dart chaired a total of 63 forums in all fifty states, Guam, and Puerto Rico, with over 7,000 people in attendance overall. Attending a public forum was extraordinarily empowering, said Denise Figueroa of New York. When someone has a disability, she said, one tends to “tolerate the discrimination, because it’s how you survive.” Hearing people talk about their experiences, however, could be a consciousness-raising experience and charge one with a desire to fight for human rights. It was also empowering, said Figueroa, because one realized “you weren’t alone."¹⁵

While traveling throughout the country, Dart collected upwards of 5,000 documents and tape recordings detailing discrimination, offering proposals, and urging passage of the ADA.¹⁶ In addition to people with disabilities, comments came from parents, health care providers, and others who worked with people with disabilities. Virtually every type of disability was represented. Thousands of people filled out petitions titled “A VOTE FOR JUSTICE,” which declared support of the ADA and concluded with the invitation: “I HAVE PERSONALLY EXPERIENCED AND/OR OBSERVED THE FOLLOWING DISCRIMINATION AGAINST PEOPLE WITH DISABILITIES:.” For example, when Gary Janski, who had a psychiatric disability, tried to rent a favorite, vacant apartment, the owner said: “we won’t rent to your kind.” When you’re “crippled,” observed Sheila Sorenson, “you get treated like you’re a two year old and can’t do anything.” “It makes us feel better to [do] things on our own instead of having everything done for [us],” she said. Ree Steidemann described how deaf persons she worked with repeatedly tried to reach hospitals and other institutions through TTY’s, where no one answered or people answered and did not know how to use their TTY devices.* “Please, please help us,” wrote Frances Murtagh, an exasperated mother of a child with cerebral palsy. “I’m at my wits end trying to fight these people alone.” In a profound poem, Carolyn Schwartz pleaded: “So before you condemn what you don’t understand. Let me reach out to you and come touch my hand.” Debbie Wimmer described how she overheard a security guard announce: “I have a girl in a wheelchair that needs watching.” “I was speechless. I was hurt. I was mad,” wrote Wimmer. Phyllis Geldzalh captured the blunt sentiments of many people with disabilities: “It would be a serious injustice if ADA was not passed."¹⁷

In addition to presenting boxes of materials to Congress, the task force issued 11 interim reports to Congress, and prepared 37 statements to leaders in the disability community. Dart also sponsored 14 meetings in Washington and made presentations to various organizations around the country, reaching an estimated 25,000 persons. Moreover, task force members contributed to lobbying efforts by consulting with members of Congress and the executive branch. As a testimony to its dedication to, passion for, and personal investment in disability policy, the task force carried out all its efforts without government funding, through volunteered time and money. And it far exceeded Congressman Owens’s expectations.

Although the disability community conducted very little legal work on the ADA in 1988, this was the fourth main objective in addition to strategy development, grass roots mobilization, and lobbying. By mid-1989, a legal team was fairly organized. The lead attorney for the disability community, and the one who most often testified before Congress on behalf of the ADA, was Arlene Mayerson of DREDF. She had worked extensively on the Voting Accessibility for the Elderly and Handicapped Act, Civil Rights Restoration Act, and Fair Housing Amendments Act, and had submitted countless briefs to various committees and courts. Especially significant was her role in passing the Handicapped Children’s Protection Act. Although Mayerson lived in Berkeley, California, during the congressional deliberations on the ADA, Mayerson visited Washington frequently, for weeks at a time, in order to guide legal strategy. Chai Feldblum of the ACLU, who had met Wright while working on the Civil Rights Restoration Act (the first time HIV/AIDS entered a Senate bill for civil rights protections), fulfilled much of the daily responsibilities of legal writing while Mayerson was in California. Although Feldblum specialized in AIDS-related law, and championed the efforts to include persons with HIV and AIDS within the housing provisions, she began developing a firm grasp on general disability law.

Mayerson and Feldblum were hardly alone, however. Robert Burgdorf, the original author of the ADA and now a professor at the District of Columbia School of Law, participated in all modifications to the bill and helped ensure continuity from the original version. Tim Cook of the National Disability Action Center offered general guidance as well as his expertise with respect to public accommodations and transportation. Weisman, of EPVA, served as the resident specialist in Transportation. Bonnie Milstein of the Mental Health Law Project offered her expertise concerning mental impairments. Karen Peltz-Strauss, from the National Center for Law and the Deaf, focused on telecommunication provisions. Depending on the issues pressing at any given moment, these and other attorneys worked closely with Congress, disability strategists, and lobbyists to translate disability objectives into proper legal form. Meanwhile, attorneys Robert Funk and Evan Kemp worked on behalf of the disability community within the Bush administration, respectively as a White House negotiator and Chairman of the Equal Employment Opportunity Commission (EEOC).

The massive effort of the disability community was not without its tensions. Many disability organizations had previously been in conflict with one another over limited government resources. As with any coalition, there were tensions between those who held Washington leadership roles and those who worked in the trenches, between inside-the-beltway politicos and persons throughout the rest of the country. Some felt that their views were not being adequately represented in the decision making process. Others resented claims that persons outside of Washington did not understand the legislative process. There was also tension between persons with disabilities and those without them. It is natural to assume that African-American and women’s advocacy groups would be led by African Americans and women. In the disability community, however, one found large numbers of persons without disabilities at the helm. Regardless of the actual impact on policy development and implementation, some persons with disabilities demanded that “their own” be in charge. The important point, however, is not the presence of these tensions, but the way in which the disability community overcame them.

There was something in the ADA for everyone. Virtually all disability sub-groups wanted to, and subsequently did, champion the goals of the ADA. With few exceptions, they were united in the commitment that there would be “no long term legitimation of unequal status for people with disabilities.” Full realization of the goals might take decades, but they wanted to undercut any national policies that would promote discrimination indefinitely. The disability community made a second important commitment. There would be no splintering with respect to the ADA: “No subgroup of people with any type of physical or mental disability, or perceived disability, no matter how politically impotent or how stigmatized, will be sacrificed."¹⁸ And they would fight each other’s battles. Advocates for persons with mental retardation pushed for ending discrimination against AIDS; people with epilepsy argued for the need for accessible transportation; and individuals using wheelchairs urged that persons with mental disabilities equally deserved freedom from employment discrimination. Even at the most intense moments in congressional deliberations, the community would stick together.

*Task Force members were: Elmer Bartels, Wade Blank, David Bodenstein, Frank Bowe, Marca Bristo, Dale Brown, Philip Calkins, David Capozzi, Julie Clay, Susan Daniels, James DeJong, Eliot Dober, Charles Estes, Don Galloway, Keith Gann, James Havel, I. King Jordan, Gordon Mansfield, Paul Marchand, Connie Martinez, Celane McWhorter, Oral Miller, Gary Olsen, Mary Jane Owen, Sandra Parrino, Ed Roberts, Joseph Rogers, Liz Savage, William Spencer, Marilyn Price Spivack, Ann Vinup, Sylvia Walker, Michael Winter, Pat Wright, Tony Young. Task Force staff were: Douglas Burleigh, Yoshiko Dart, Tsuneko Gozu, Marcia Lee Nelson, Eileen Raab, Kate Reilly, Gwyneth Rochlin, Marnie Sweet, Hisako Takei.

*TTY refers to a teletype device for transmitting text over telephone lines. Such a device is often referred to as a TDD—Telecommunication Device for the Deaf.

5. Liz Savage, interview, July 30, 1993.

6. Jim Weisman, interview, November 16, 1993.

7. Joseph Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993), p. 114.

8. Weisman, interview.

9. Curtis Decker, interview, October 12, 1993.

10. Ralph Neas, interview, December 10, 1993.

11. Paul Hearne to Billie Jean Keith, May 9, 1997, in possession of author; Hearne, telephone conversation with author, May 14, 1997.

12. National Council on the Handicapped, Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons With Disabilities—With Legislative Recommendations (February 1986); National Council on the Handicapped, The ICD Survey of Disabled Americans: Bringing Disabled Americans Into the Mainstream (New York: Louis Harris and Associates, Inc., 1986).

13. Pat Wright, interview, November 19, 1993.

14. Maria Cuprill, interview, April 28, 1997.

15. Denise Figueroa, conversation with author, June 5, 1997, Renaissance Hotel, Washington, D.C.

16. Discrimination diaries are currently stored at the President’s Committee on Employment of People with Disabilities.

17. The discrimination diaries are currently stored at the President’s Committee on Employment of People with Disabilities. These quotations are taken from selections printed in Appendix E.

18. From ADA to Empowerment: The Report of the Task Force on the Rights and Empowerment of Americans with Disabilities (October 12, 1990), p. 14.