PUBLICIZING THE ADA: ADVOCACY AND THE GOVERNMENT RESPONSE

Gallaudet University erupted on March 1, 1988, as an estimated 1,500 alumni, students, faculty, and community supporters rallied to demand the selection of the university's first deaf president. The board of trustees had narrowed its candidate pool to three: Harvey J. Corson and I. King Jordan, both deaf; and Elizabeth A. Zinser, who neither had a hearing impairment nor understood sign language. On the evening of March 6, under the leadership of Chairperson Jane Bassett Spilman, the board selected Zinser as president. Hundreds of students, alumni, and others responded the next morning by shutting down the school: they organized before dawn and blocked every campus entrance. They even searched cars and planned to lie on the ground to prevent a helicopter from landing in the event that Zinser tried to step foot on campus (she never did). They also marched to Capitol Hill and demonstrated at the White House.

Later that day, a ten-person delegation representing students, faculty, and alumni issued four demands to the board: appoint a deaf president; demand Spilman's resignation; protect protestors from punishment; and designate a majority of the board's seats for deaf persons. But the board rejected the demands. At a meeting in the field house that followed, where Spilman appealed to a crowd of protesters to give Zinser a chance, students shouted down Spilman, sounded a fire alarm to obstruct her presentation, and taunted her: "If you could sign, we could hear you." The following day, on March 8, the group hung Zinser and Spilman in effigy; later they cut them down and burned them.

The volatile activity on the campus of the world's only deaf university was front-page news; people from around the world lent their support. Senator Robert Dole (R-KS), Congressmen David E. Bonior (D-MI) and Tony Coelho (D-CA), and Vice President George Bush backed selection of a deaf president. Bonior threatened that the university might lose government funding, which accounted for 75 percent of its budget, unless it met demonstrators" demands.

The Deaf President Now! protest "proved, convincingly, that deaf people could band together effectively for a common cause and succeed."

--Jack Gannon

To students, alumni, and faculty, the selection of a deaf president symbolized deaf persons' attempt to attain full citizenship, equal participation, and self-direction. "The time has come for the plantation mentality, which has for so long controlled this institution and others serving the deaf, to end," psychology professor Allen Sussman said. "We want to be free from hearing oppression," student leader Bridgette Bourne declared. "We don't want to live off the hearing world, we want to live as independent people," she continued. Freshman John Limmidis opined: "We believe that we have to fight to prove to the world that a deaf person is just as good as a hearing person." The presidency of Gallaudet was the highest position in the deaf community; a decision to bypass a deaf person for that office broadcasted the message that hearing persons were better suited for power and leadership. Consequently, it questioned the potential of deaf persons in other employment and social opportunities. Like racial minorities and women, the deaf community wanted the empowerment and legitimacy that comes with leadership from one's own ranks.

On March 10, under relentless pressure, Zinser submitted her resignation. The following day the board acceded to the protestors' demands: it appointed Jordan president, accepted Spilman's resignation, committed to reconstituting the board, and dismissed repercussions for demonstrating. It was a huge victory for the deaf community. As one historian said, the protest "proved, convincingly, that deaf people could band together effectively for a common cause and succeed."

The protest also benefitted and strengthened the disability community as a whole. Students' demands for self-direction, independence, and opportunity echoed the disability rights movement. National coverage of the events confronted many Americans with a foreign image of disability: repudiation of pity and charity, insistence on civil rights. The protest also came at an opportune moment, just over a month before the Americans with Disabilities Act was introduced in Congress. It powerfully symbolized the potential of the disability community, a fitting beginning to a nationwide education about disability and the ADA.

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).

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.

The ADA coalition embraced four major functions: strategy development; education and lobbying; grass roots mobilization; and legal analysis.

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. 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. 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." 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.

The ADA's success was due in no small part to Pat Wright's efforts. "She has more hutzpah than anyone I've ever met."

--Jim Weisman

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. 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. Such organizations as NCIL and ADAPT brought the concerns of consumer-directed organizations to the table. Further more, 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.

Victory would be won through the efforts of thousands of advocates across the nation who could humanize and personalize the issues.

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. 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. 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.

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.

Justin Dart chaired 63 forums in all fifty states, with over 7,000 people in attendance, and collected more than 5,000 documents supporting the ADA.

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 wheel chairs. 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."

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 (see Appendix E for a collection of examples). 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."

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.

"No subgroup of people with any type of physical or mental disability, or perceived disability, . . . will be sacrificed."

--Task Force on the Rights and Empowerment of Americans with Disabilities

There was something in the ADA for every one. 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." 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.

The Government Response

While persons with disabilities throughout the country were mobilizing to learn about and support the ADA, the general public remained largely unaware of the legislation. Prior to the ADA's introduction, The Washington Post pointed to the ADA as a potential rallying point for the disability community. But there was virtually no mainstream press coverage, either of the bill's introduction, or during the rest of 1988. This was due in part to the lateness of the bill's entree to Congress. Since the ADA's advocates were not pushing for immediate passage, the bill drew neither the press coverage nor the opposition it would when the bill became a serious proposal in 1989. Individuals throughout the country, however, helped raise consciousness about the ADA by talking with their circles of friends and family. And scores of disability and non-disability organizations endorsed the ADA and funneled information to their members.

Disability and congressional advocates focused much more on the executive branch and Congress than on the general public. The ADA was first introduced, as Congressman Coelho said, "to just get reaction, to get people to respond." A prominent executive branch voice was Evan Kemp, who approached the issue both as a Commissioner of EEOC and as a disability rights advocate. He made his first public declaration on the ADA before hundreds of people at the Employers Banquet of the President's Committee on Employment of the Handicapped. The event took place in the International Ballroom of the Washington Hilton Hotel, just a week after the bill's introduction on May 5. Kemp wanted a bill that President Bush could support and therefore alerted people to problematic provisions. Kemp spoke primarily about employment issues, of how it made good business sense to tap the market of disabled persons by promoting accessibility, and good government sense to reduce federal spending through employment. For these reasons he applauded the ADA, but he also questioned its current form. Kemp thought the bill needed to be more detailed to avoid control by bureaucratic regulators. He was especially concerned about the definition of "reasonable accommodation" (see Appendix F), and advocated federal economic assistance to employers to ease the economic burden the ADA might cause. He also thought the proposed limit on reasonable accommodations was "unrealistic" because an employer would have to demonstrate either that the business would be "fundamentally changed" or that it would be forced to file bankruptcy. The definition of "handicap" (see Appendix F) was also problematic for Kemp. He proposed a restricted definition that focused on what he termed the "truly disabled": the "severely handicapped" and persons "excluded because of myths, fears and stereotypes." Kemp's emphasis on the vagueness of language, limits for accommodation, and definition of disability, foreshadowed several issues that would dominate congressional deliberations.

A vigorous response came from Thomas M. Boyd, Acting Assistant Attorney General, who presented the position of the Reagan administration. While the administration "is deeply committed to the goal of bringing individuals with handicaps into the mainstream of American life," wrote Boyd, "we have very serious reservations" about the extent and standards of the ADA. Highlighting the potential costs associated with disability rights, and rejecting the link to provisions for minorities and women, Boyd emphasized the need to keep the pursuit of equal opportunity "within manageable bounds." Especially problematic were the ways in which the ADA departed from Section 504 in two ways: first, by requiring barrier removal uniformly for both existing and new facilities; second, by incorporating the "utterly unrealistic and extreme" provision that a business could defend itself against charges of discrimination only if its basic existence was threatened by the cost of accommodations. The administration objected to the ADA's novel definitions of "handicap" and "reasonable accommodation," and questioned the application of reasonable accommodation beyond employment settings. Boyd also repudiated the proposal for requiring all new transportation vehicles to be accessible, and demurred to ordering implementation of universal design in new housing. Finally, the administration proposed a more limited standard of accessibility to public accommodations, and demanded that the effective date for the bill be delayed at least a year.

The ADA was introduced in 1988 to solicit the endorsement of presidential candidates and induce them to outbid one another.

Although the Reagan administration, as illustrated in Boyd's letter, was at best cautious in its sup port of the ADA, the disability community's sights were set on the next president. In fact, one of the principal reasons for introducing the ADA in 1988 was to use the politics of a presidential election year to solicit candidate endorsement and induce the candidates to outbid one another. People in the disability community correctly believed that presidential support was crucial for the ADA's success. They worked for both campaigns to encourage disabled persons to vote and make disability a campaign issue. They had some leverage. On June 30, 1988, the Louis Harris polling company determined that the disability community comprised 10 percent of the electorate, was "a force to be reckoned with in the politics of the future," and could be the deciding factor in a close election.

Vice President Bush's personal experience with disability shaped his relationship with the disability community. He had a daughter who died from leukemia, a son with a learning disability, an uncle with quadriplegia, and a son whose cancer required a plastic ostomy bag. In conjunction with his leadership of President Reagan's Task Force on Regulatory Relief, his support of the disability community had grown steadily since 1983. This was due in no small part to Kemp, who worked with Bush by writing many of his public statements.

"I am going to do whatever it takes to make sure the disabled are included in the mainstream. For too long, they have been left out, but they are not going to be left out anymore."

--Vice President George Bush

In the September issue of the disability magazine Mainstream, Kemp faced off with Timothy Cook of the Public Interest Law Center of Philadelphia (PILCOP) to argue the respective attributes of the two presidential candidates. Kemp noted how, on March 1, 1988, Vice President Bush wrote to the Gallaudet Board of Trustees and urged the Board "to set an example and . . . appoint a president who is not only highly qualified, but who is also deaf." A month before the ADA was introduced, on March 31, Bush also pledged to support legislation providing persons with disabilities "the same protection in private employment that is now enjoyed by women and minorities." Kemp noted how Bush made an even stronger commitment when he participated in the swearing in ceremony of Paul Hearne as Executive Director of the National Council on Disability, on August 12, 1988. Bush's presence alone, before nearly 100 persons with disabilities and the organization that authored the original ADA, symbolized his support of the disability community. But Bush went further and, while he did not endorse the ADA introduced to Congress, said that he would promote a civil rights act for people with disabilities. Kemp's efforts in courting Bush also bore fruit at the Republican convention in August, where Bush incorporated the rights of disabled persons into his acceptance speech. He did not say much, but it was the first time disability was included on such an occasion: "I am going to do whatever it takes to make sure the disabled are included in the mainstream. For too long, they have been left out, but they are not going to be left out anymore."

Cook, a leading disability advocate for Dukakis, focused on Michael Dukakis's strong record on disability as Governor of Massachusetts. Similar to other states, Massachusetts provided full access for persons with disabilities in all state-assisted programs and activities. It was also one of few states to have an executive-level independent agency to enforce disability civil rights. Cook noted that Governor Dukakis strengthened enforcement mechanisms for accessibility standards, including barrier-free sidewalks and roadways. He also made concerted efforts to recruit persons with disabilities for government offices, including high-level leadership positions such as the Massachusetts's Rehabilitation Commission. Moreover, Governor Dukakis had augmented Massachusetts" health insurance, attendant care, and education programs for persons with disabilities.

Yet, while Dukakis promoted accessibility in campaign functions and gave a mild endorsement to the principles of the ADA, he did not court the disability community as vigorously as Vice President Bush. In addition to his personal experiences with disability, Bush's leadership of the Task Force on Regulatory Relief and the disability community's defensive effort helped convinced Bush of the power of the community as a voting block: it commanded respect and could pay high dividends. Bush did not let the opportunity escape him. For example, at the suggestion of Kemp he made a point to incorporate disability issues into his presidential debates.

Dukakis, on the other hand, was facing criticism that he and the Democratic party were too beholden to interest groups, which led him to downplay rather than accentuate direct appeals to specific constituencies such as persons with disabilities. He thereby alienated much of the disability community. Some of Dukakis's tempered support of the disability community may in fact be attributed to the disability community itself. Some disability advocates had advised Dukakis not to come out too strong on behalf of the ADA. Their goal was to have both candidates endorse the principles of the ADA so that whoever was elected would be on their side. They thus wanted to encourage Bush to support the ADA by giving him room to outbid Dukakis, rather than make Bush feel as if he needed to contrast himself with Dukakis by being more reserved in his support of the ADA.

ADA advocates also sought the support of members of Congress. The disability community joined congressional staff and members in a cosponsorship drive that began before the ADA was first introduced and continued throughout the entire session of Congress. Cosponsorship is crucial to the success of any bill. It promises affirmative votes and enables advocates to gauge the level of support. Cosponsorship is also important because, if one can achieve a cross-section of party and ideology, it helps thwart reflexive, negative reaction and partisan labeling. Although ADA advocates anticipated a high level of cosponsorship because they presented the ADA as a civil rights bill, the process proved to be very difficult. Members did not take the issue of costs lightly and were reluctant to attach their name simply because someone else had done so. Nevertheless, by the close of the 100th Congress on October 22, 1988, 26 senators and 117 representatives had endorsed the bill.

Congressional Hearings

The highlights of the 1988 ADA campaign were the congressional hearings held in September and October. On September 27, 1988, the Senate Subcommittee on the Handicapped and the House Subcommittee on Select Education held a joint hearing in the Hart Senate Office Building. On October 24, the House Subcommittee on Select Education held a hearing in the Lafayette Hotel of Boston, Massachusetts. These hearings were not intended to be substantive examinations of the ADA's provisions. "This bill is not going anywhere this year," Senator Tom Harkin (D-IA) said flatly at the joint hearing. Senator Lowell P. Weicker, Jr. (R-CT) also conceded that the real battle would not begin until Congress reconvened in 1989. But Weicker emphasized the need to get disability discrimination on the table for immediate discussion: "If there is silence now, there will be silence later. If there is indifference to discrimination now, there will be indifference later." The purpose was therefore to establish a record of discrimination--to humanize the ICD Survey data with the lives of real persons--and make congressional inaction on the ADA intolerable.

The message was clear: persons with disabilities struggled with unequal opportunities; they confronted not only the challenges of their impairments, but also the barriers society erects; federal action was necessary to remedy the situation.

Of the 95 witnesses at the two hearings, there was not a single technical expert speaking to the details of the bill. Only seven federal and state government officials testified. The remaining witnesses were all from the disability community--persons and parents of persons with disabilities, and people who worked with disabled persons in such settings as independent living centers--who spoke of their own experiences. This was, therefore, the first instance in which a congressional hearing regarding disability was dominated by the presence of people with disabilities. Some of the predicaments identified by witnesses were not even issues that the ADA addressed. But the message was clear: persons with disabilities struggled with unequal opportunities; they confronted not only the challenges of their impairments, but also the barriers society erects; federal action was necessary to remedy the situation.

The joint hearing in the Hart Senate Office Building overflowed with eager spectators, many of them disabled, and many having traveled hundreds of miles to participate. Around 200 people with disabilities came to Washington for the event from New Jersey alone. Senator Weicker actually had to stop the proceedings to attend to space needs; he asked those present to rotate so that others watching on television could have a chance to be in the hearing room. The stories of those who testified were gripping and spoke volumes.

Mary Linden, who had been unable to walk since early childhood as a result of physicians' surgical errors, launched the first panel. She described her struggles with a public school that considered her unworthy of education. It was not until after Linden graduated from a disability- segregated high school in 1951 that she learned how to write, and then only because she taught herself. Subsequently she spent over two decades accumulating 61 hours of college credit. To her dismay, she could not enroll in a four-year college because of inaccessible public transportation. She therefore had to do all of her work through correspondence. Linden said she desperately wanted to finish her degree because it was necessary for attaining what she significantly termed "the most precious thing in the world--a paying job!" "I beg you to pass this bill," she pleaded, so that other children will not have to face the same barriers.

Twelve-year-old Jade Calegory followed Linden's testimony and, compared with Linden, presented the stark contrast of what opportunity could do. Jade praised the Federal Government for passing the Education for all Handicapped Children Act because the act enabled him, with his spina bifida and wheelchair, to join the rest of his community's children in the public school. Jade starred in the movie "Mac and Me," which he described as "terrific because it shows a kid with a disability giving help instead of just getting help, and nobody tries to cure me or take away my disability by the end of the movie. That gives people the idea that it is okay to be disabled and just be accepted for who you are." Jade also described his passion for participating in wheelchair races. But he reported that he would get frustrated when he tried to ride a bus home. "Most of the buses do not have lifts on them. Some of the drivers are very rude and get mad if I want to take the bus. Can you believe that? I work and part of my taxes pay for public buses, and then they get mad just because I am using a wheelchair." Accessible buses were important, said Jade, because "it is hard for people to feel good about themselves if they have to crawl up the stairs of a bus, or if the driver passes by without stopping."

Dan Piper and his mother, Sylvia Piper, illustrated the uncertainty they faced because of Dan's developmental disability. Although the Pipers were told that Dan's condition was "hopeless" when he was a young child, and that Dan should be institutionalized, they decided to keep him at home. Ultimately he joined the special education program of an integrated public school, where he took courses with non-disabled peers, helped manage the football team, and became the lead performer in a traveling high school lip-sync group. The Pipers were worried, however, about what would happen to Dan when he finished school and wanted to fulfill his dream of getting a job and living in his own apartment. "Will the landlord decide, because Dan has mental retardation, that he is incapable of independent living? Will he be denied access to transportation? Will restaurants refuse service? Will hotels refuse accommodations?" The Pipers viewed the ADA as a much- needed extension in disability policy: "It is now time to expand handicapped antidiscrimination to the private sector so that Dan's and our visions for his adult life and the lives of many others can finally become a reality."

Judith Heumann's polio resulted in paralysis. Despite her remarkably successful career, she was burdened by the psychological impact of discrimination. She described how she could not enter public school as a child because she was considered "a fire hazard." When she graduated from high school, the principal tried to prevent her from accepting her diploma on stage because of her wheelchair. In college, she was denied her elementary school teaching credentials because of her paralysis: administrators did not think she could teach from a wheelchair. On one occasion, officials at an auction house attempted to remove Heumann and a friend because they were allegedly "disgusting to look at." People do not emerge unscathed from these experiences, concluded Heumann: "this stigma scars for life."

Belinda Mason knew stigma first-hand. At the age of 30, Mason had been diagnosed HIV- positive after a blood transfusion. Moreover, a stroke left her partially paralyzed. "I have learned a terrible truth about America," she said of her subsequent experiences, "that it is not a good place to be different or to be ill, in spite of what we teach in government class." She related that her 75- person town closed the community pool for a week after she entered it, ostensibly because of a cigarette butt. One neighbor carried around a petition demanding that she move out. Mason described another woman who lost her job simply because she decided to have her son, who had AIDS, live at home. She also told of one occasion where police locked a man with AIDS in his car overnight, rather than take him into jail. The next day, people peered through the windows at him as if looking in an aquarium. Mason acknowledged that one cannot simply legislate attitudes and behavior. But she poignantly added: "The truth is that sometimes legislation precedes and enhances humanity." Mason was the first person with HIV ever to testify before Congress. And her moving testimony earned her an appointment to the President's Committee on the Human Immunodeficiency Virus Epidemic.

Congressman Owens organized the field hearing in Boston at the request of Dart and others from the New England disability community. The purpose was to solicit an even more extensive demonstration of citizen participation. "It was an unforgettable day," said Owens, for the range of disabilities represented, the racial and gender diversity, and the united spirit of those in attendance. Everyone wanted the chance to address Congress. To accommodate as many people as possible, the subcommittee met nonstop from 9:00 a.m. to 6:00 p.m.: over 80 witnesses testified in rapid-fire succession, each having but a few minutes to relate his or her experiences.

William Cavanaugh, a consumer of the Massachusetts mental health system, spoke about the "abusive treatment practices and human rights violations" of persons in mental institutions. He described one man, Vincent Veletia, who suffocated and died after being restrained with "a full sensory deprivation hood," replete with ear phones emitting constant static, and being forced into a fetal position with his hands cuffed behind his knees. Bonnie O'Day described how a prominent disability advocate from Charlottesville, Franz Stielfried, died because of poor accessibility. Impeded by an intersection without curb cuts, Stielfried tried to cross a dangerous, grassy area next to a 50-foot drop. While trying to lower himself over another curb, however, he lost control of his wheelchair and fell over the cliff to his death. He had been traveling to a meeting to demand for greater accessibility.

"You know, sometimes I almost wish a person would hate me for being disabled. Then at least I would know they knew I was alive."

--Anonymous

Nancy Husted-Jensen described how fully-registered disabled persons were turned away from voting booths because they supposedly did not look sufficiently "competent" to vote. Eileen Healy Horndt similarly recounted how one man with mental retardation was barred from opening a savings account at a local bank because he "did not fit the image the bank wants to project." She spoke of another gentlemen with quadriplegia who joined her in visiting a presidential campaign office to discuss accessibility, but there was no handicap parking space wide enough for the van lift. Horndt also described her own frustration of having to use a calling card at pay telephones because she could not reach the coin slot.

Only after the Disability Law Center of Boston threatened legal action did Barbara Waters avoid leaving college when administrators said her epileptic seizures represented a "liability risk." Eleanor Blake was not so fortunate. After being hospitalized for manic depression, college officials denied her graduation from the human services program because, they said, she was not "psycho logically fit." Later, after switching majors, she graduated summa cum laude.

Patricia Deegan further illustrated the excessive discrimination persons with mental illness face, including "the assumption that what we say about our own experiences is an expression of a disordered mind and can therefore be ignored." Presumed to be crazy, one's basic civil rights were readily violated. Deegan related how one woman reported to mental health workers that she was pregnant, but the professionals dismissed her claim as delusional. Later she visited an emergency room only to be met with the same response. That evening, while roaming the streets in desperation, the woman miscarried and suffered from serious hemorrhaging.

"We are not asking for pity. We are not even asking for your sympathy. All we ask is that you make real the promises and opportunities that America strives to offer everyone."

--Denise Karuth

These examples capture only a small fraction of the testimony presented about lost education and employment opportunities, physical and transportation barriers, social stigma, and violation of basic human rights. But the problem came not only from actions committed, it also came from simple avoidance. Michael Oestreicher related how one frustrated, member of a group discussing beach accessibility poignantly declared: "You know, sometimes I almost wish a person would hate me for being disabled. Then at least I would know they knew I was alive."

In a discrimination diary presented to the committee, Cynthia Miller captured the exasperation evident in these sentiments and those of many other persons with disabilities. "I got home late this evening and did the things most Americans do like cooking, cleaning, feeding the cat," Miller wrote. Then she prepared a list of things she thought needed to be changed to improve the lives of persons with disabilities.

I thought of doing all these things, but the list seems to grow every day. Instead, I got angry and depressed. I got angry and depressed because after I work all day, fight the barriers to get to work, [and] fight the barriers to do the things all Americans do like shop, I have meetings and phone calls and letters and other things I have to do to fight for my equal rights as an American with a disability. I'm tired of being tired, frightened, angry and depressed every day, fighting for my rights. And now, I'm writing a stupid diary until 2:00 in the morning to prove that discrimination exists to my Congress. Why does Congress think so many Americans are fighting this battle if discrimination doesn't exist? Does Congress think we enjoy or prefer to fight for equal rights before we eat or sleep sometimes? . . . I would like to watch The Cosby Show, with slippers on my feet, and time on my hands, like other Americans. I don't want to be Rosa Parks. I just want to be Cyndy Miller.

Denise Karuth, who used a wheelchair because of multiple sclerosis and was legally blind, eloquently stated what people like herself and Cyndy Miller were fighting for. "We are not asking for your money," she explained. "We are not asking for pity. We are not even asking for your sympathy. All we ask is that you make real the promises and opportunities that America strives to offer everyone: the respect and dignity we deserve as free and responsible citizens."

The hearings were captivating and televised on C-Span. Savage used a copy of the proceedings to edit a 30-minute version and make it available all around the country. She became known as the "Girl Scout Cookie-Lady" for her persistence in pushing the video on people. Dart also played a crucial role in spreading the edited hearings by taking copies with him as he traveled around the country for his public forums. People could use the video to explain what disability discrimination was all about and draw on the testimony for examples of how to describe their own experiences.

The ADA on the Eve of the 1988 Election

Although no further action was taken on the ADA in 1988, the ADA did not "die," as some people claimed, when Congress closed its 100th Session on October 22. On the contrary, the ADA of 1988 fulfilled its mission. ADA sponsors never intended it to come to a vote that year. The goal, rather, was to complete the process begun by the National Council on Disability in getting the ADA on the legislative agenda, not only as a token measure, but as a congressional priority. The disability community reached this objective with a pronouncement from Senator Edward M. Kennedy (D-MA) at the joint hearing. "I just want to give the assurance," he asserted, "that this will be the first order of business" when Congress convenes for the 101st session in 1989.

The ADA of 1988 fulfilled its mission. The goal was to get the ADA on the legislative agenda as a congressional priority.

The disability community had begun its education process, both internally and with members of Congress and presidential candidates. Members were learning more about what it meant to be disabled. They were being exposed to scores of people with disabilities for the first time. Many declared their support by becoming cosponsors of the bill. The disability community was also becoming much more optimistic at the close of 1988. The 1980s had been a decade of struggle against encroachments. But the Civil Rights Restoration Act symbolized the new alliance formed with the civil rights community. And the Fair Housing Amendments Act broke new ground by extending disability policy to encompass the private sector. The Reagan administration was winding to a close, and the tide was apparently turning. Both presidential candidates had vowed to support legislation akin to the ADA. By the end of 1988, the compelling problem of discrimination had been fused with the solution crafted by the National Council on Disability. The political climate was also changing in a way that would invite, rather than impede, future action.

CREATING A WORKABLE ADA: THE SENATE AND THE WHITE HOUSE

On November 8, 1988, George Bush defeated Michael Dukakis in the election for President of the United States. Bush's strong statements in support of the disability community, and particularly civil rights legislation for people with disabilities, had swayed many disabled voters, including many Democrats. In fact, a poll of voter intentions on the eve of the election, conducted by Louis Harris and Associates, suggested that the wide margin of persons with disabilities supporting Bush was a deciding factor in the election. Although many persons with disabilities had campaigned for Dukakis and were disappointed by the outcome, Bush's election clearly offered an opportunity to the disability community. His attentiveness to disability issues signaled a change in the political climate and made passage of the ADA seem more promising. Moreover, two days before his inauguration, Bush avowed his intent to follow through on his pledges and push the ADA toward passage. "I said during the campaign that disabled people have been excluded for far too long from the mainstream of American life," Bush noted. "One step that I have discussed will be action on the Americans with Disabilities Act in order, in simple fairness, to provide the disabled with the same rights afforded others, afforded other minorities."

In another respect, however, the election of 1988 was damaging to the ADA cause. Senator Lowell P. Weicker, Jr. (R-CT), a long-time supporter of persons with disabilities and the Senate sponsor of the ADA in 1988, lost his bid for reelection to Joseph Lieberman. As one senate staff member said, Weicker was "one of the 5ive-hundred-pound gorillas" in Congress. His leadership in the area of disability was consistent and strong. Now someone else had to fill the void he left. The chief cosponsor of the 1988 ADA was Senator Tom Harkin (D-IA), who had worked closely with Weicker, the National Council on the Handicapped (NCD), and the disability community in the development of the ADA. Weicker and Harkin had even discussed whether Harkin's position as Chairman of the Subcommittee on the Handicapped placed him in the best position to be the original sponsor in 1988. Harkin also had a personal understanding of the need for the ADA because of his brother, who was deaf. It was therefore natural for Harkin to assume Senate leadership. But it was not a foregone conclusion.

"I didn't get elected to get re-elected. My brother is deaf. I understand discrimination. . . . We are doing this legislation."

--Senator Tom Harkin

Sponsorship of the ADA was a risky endeavor for the first-term senator. He was up for reelection in 1990, and no Democratic senator from Iowa had ever won a second term. As a relative newcomer to disability policy, Senator Harkin would have to begin his relationship with the disability community by making compromises with respect to provisions in the ADA--potentially alienating the people he was trying to help. Moreover, failure to pass the bill rapidly might lead some people to compare the leadership skills of Senators Harkin and Weicker. By sponsoring the ADA, Harkin would also become a target for the opposition, which included employers, transit operators, owners of public accommodations, railroads, telecommunications providers, and state and local governments. Finally, the prospects for successfully expanding civil rights protections to incorporate an additional "class" of people, while improved with the change in administration, remained uncertain at best.

Sponsoring the ADA and risking failure could potentially jeopardize Senator Harkin's political career. Although Robert Silverstein, Staff Director and Chief Counsel for the Subcommittee on the Handicapped, cautioned him about the pitfalls, Harkin accepted the challenge. "I didn't get elected to get re-elected," he told Silverstein. "My brother is deaf. I understand discrimination. I understand what it means and what this country can look like in thirty years. We are doing this legislation."

Master Strategy and the Retooling of the ADA

Senator Harkin took the lead in preparing the ADA for reintroduction. Success depended on developing a solid strategy for maneuvering the bill through the treacherous terrain of Congress. It also required attaining the complete backing of the disability community. Harkin's first step was to establish an effective relationship with Senator Edward M. Kennedy (D-MA) and Carolyn Osolinik and Michael Iskowitz from Kennedy's committee staff. This was important because a bill successfully voted out of Harkin's Subcommittee on the Handicapped would have to clear Kennedy's Committee on Labor and Human Resources. Coordination of all legislative activities with Kennedy could improve the possibility of a smooth and quick transition to the Senate floor. The disability community was also courting the support of Kennedy. They hoped his stature as a "heavy hitter" senator with seniority could match the standing of Senator Weicker and augment the efforts of Harkin. Kennedy brought the experience of decades of civil rights leadership. Osolinik, whom Pat Wright described as "one of few people who really saw disability as a civil rights issue," directed civil rights issues in Kennedy's office. Moreover, Kennedy had personal experiences with disability through his son who lost a leg to cancer and a sister with a developmental disability. Kennedy's support, however, depended on making significant changes to the ADA.

Senator Kennedy brought the experience of decades of civil rights leadership in addition to his stature as a "heavy hitter" senator with seniority.

Senators Harkin and Kennedy concluded that the bill introduced in 1988 was too ambitious and stood little chance for passage. Therefore, they decided to rewrite the ADA. In accordance with the objectives of the disability community, the senators' primary goal was to achieve the best possible civil rights coverage for persons with disabilities. Toward this end, they and their staffs, in consultation with leaders from the disability community, developed a four-pronged legislative strategy.

First, Senators Kennedy and Harkin made a commitment to achieving bipartisanship. They believed that the ultimate goal of legislation must not simply be to pass a bill, but rather to make an enforceable law. For the bill to be taken seriously, it needed to be widely supported by the business community as well as the disability community, Republicans and Democrats, the Senate and the House, and the Bush administration. Second, Senators Harkin and Kennedy wanted to craft a bill that could withstand the strict scrutiny of Congress. Rather than introduce a bill with aggressive provisions and rely on subsequent negotiations, which ran the risk of permanently labeling the bill "extreme," they hoped to hold extensive discussions and reach important compromises before they even introduced the bill.

While the ADA's complete effect would not be immediately apparent, the American landscape would be transformed for subsequent generations.

The third and fourth strategic commitments followed logically: modesty and parity. The original ADA applied rigorous and rigid standards of accessibility that would be implemented immediately. Senators Kennedy and Harkin instead promoted accessibility at some point in time, and varied provisions according to specific circumstances. While the bill's complete effect would not be apparent immediately following its enactment, the American landscape would be transformed for subsequent generations. Finally, in crafting the actual language of the bill, Silverstein and Osolinik worked with the disability community to build the ADA securely on the foundation of earlier legislation--especially on the Civil Rights Act, Section 504 of the Rehabilitation Act, and the Fair Housing Amendments Act (See Appendix B). Proponents could therefore argue that the bill was an application of tested principles, not a new creation.

With this strategy in place, Osolinik and Silverstein began 1989 by reviewing the bill line by line. Redrafting the ADA was not, however, a solitary endeavor. After developing their own preliminary ideas about what provisions should constitute a new bill, Silverstein and Osolinik turned to others to identify interests in and reservations about the bill, including the disability community, all "covered entities," the Bush administration, and members of Congress and their staffs. The principal House contacts were Congressman Tony Coelho (D-CA) and Rochelle Dornatt from his staff. Especially helpful from the business community was Nancy Reed Fulco of the U.S. Chamber of Commerce. Osolinik and Silverstein worked most closely, however, with a group of representatives from the disability community. In addition to the general guidance provided by Pat Wright, Ralph Neas, Liz Savage, and Paul Marchand, Silverstein and Osolinik received technical expertise from attorneys Arlene Mayerson, Chai Feldblum, Robert Burgdorf, Jim Weisman, and others according to specialties. By retooling the bill in close cooperation with this group, Osolinik and Silverstein hoped to earn the backing of the disability community. Then they could present a united front as the bill went through Congress.

From January to March, 1989, Silverstein and Osolinik produced scores of different drafts of the ADA. By March 15 they completed a draft (S. 933), which they circulated privately to representatives of the disability community, the Bush administration, and several members of Congress. The bill duplicated the findings and purpose of the original bill (S. 2345) crafted by NCD (see §2 in Appendix H). It also covered the same main areas, with the exception of housing (which had been addressed by the Fair Housing Amendments Act). S. 933 even incorporated some language of S. 2345 verbatim. But there were marked distinctions.

The new bill, S. 933, demonstrated the commitment to modesty and flexibility in standards by tailoring definitions, provisions, and enforcement to four main titles--Employment, Public Services, Public Accommodations, and Telecommunications. The dedication to legal precedent was also clear. S. 933, for example, incorporated more than five times as many references to earlier statutes. There was also a difference in tone. Whereas the original bill, S. 2345, emphasized discriminatory practices that should not be tolerated--for example, providing unequal services. S. 933 spelled out positive, proactive steps that must be taken to meet nondiscriminatory standards. Several major revisions are worth noting.

One of the most contested aspects of the ADA was the definition of disability (see Appendix F). People asked: Who would be protected by the ADA? It was a difficult question because one cannot readily identify disability with the same precision that one can identify, for example, race and gender. It would also be impractical to name, in a statute, each and every type of disability. This would be cumbersome, if not impossible, and require constant adjustment for future, unknown impairments. The challenge, therefore, was to find a definition that was at once inclusive enough to cover diverse disabilities, but not so universal that anyone could claim protection by the ADA. Under the original bill, S. 2345, a disability was defined as "a physical or mental impairment, perceived impairment, or a record of impairment." This definition was similar to the three-pronged definition implemented under Section 504, except that it did not limit the first prong to impairments that "substantially limit" major life activities. This meant that anyone with "any physiological disorder or condition, cosmetic disfigurement, or anatomical loss" or "any mental or psychological disorder" was covered. Osolinik and Silverstein instead used the Section 504 standard and restricted the first prong to "a physical or mental impairment that substantially limits one or more of the major life activities--such as seeing, walking, self-care, and learning. This meant that a physical impairment such as an infected finger would not constitute a disability.

The most controversial issue in the redrafting stage was the cost and burden imposed upon covered entities. Legislative endeavors of the 1980s successfully established that, in the area of disability civil rights, equal treatment was not enough. The goal had to be equal opportunity. That required modifying policies, providing services, and breaking down barriers: "reasonable accommodations" (see Appendix F). In other words, it was not enough simply to leave the door open, the door also had to be widened. And this meant that civil rights for persons with disabilities could cost money. But at what point does providing "equal opportunity" become an "unreasonable" burden?

Under S. 2345, the only defensible limits to providing accommodations were actions that "would fundamentally alter the essential nature, or threaten the existence of, the program, activity, business, or facility in question." Although Burgdorf wrote the provision to assure that compliance would not mean shutting down a business, it came to be known pejoratively as the "bankruptcy" provision: interpreted to mean that a business would have to go to the brink of bankruptcy before it could defend against charges of discrimination. S. 933, on the other hand, followed Section 504 in using "undue hardship" (see Appendix F) as the standard for determining whether employment accommodations were "reasonable." Undue hardship meant "an action that is unduly costly, extensive, substantial, disruptive, or that will fundamentally alter the nature of the program." It was not a fixed concept, but rather varied on a case-by-case basis, according to such factors as the size of the business, the type of operation, and the nature and cost of the accommodation.

Concern for cost shaped the new approach to barrier removal. S. 2345 required the retrofitting of all public transportation vehicles and facilities to make them accessible. S. 933, on the other hand, varied its demands according to whether vehicles and facilities were newly constructed or already in operation. The general principle was that all new vehicles and transportation facilities would have to be "readily accessible to and usable by individuals with disabilities" (see Appendix F). For used vehicles, transportation operators had to make "good faith efforts" to find accessible vehicles. If a company remanufactured a vehicle to extend its life for at least five years, it had to be made readily accessible to "the maximum extent feasible." With regard to existing facilities, S. 933 required only that certain "key stations" had to be retrofitted for accessibility.

The approach in S. 933 to barrier removal in public accommodations paralleled the transportation provisions. The original bill, S. 2345, required that nearly every place of public accommodation had to remove all barriers within five years. This provision earned S. 2345 the nickname of the "flat earth" bill. Drafters of S. 933, however, dispensed with the idea of wholesale retrofitting. Instead they required that all new construction be accessible. Nevertheless, they did not want to leave existing structures untouched. Consequently, drafters created a new legal term. S. 933 required that businesses make changes to existing structures where accessibility was "readily achievable" (see Appendix F), which was eventually defined to mean "easily accomplishable and able to be carried out without much difficulty or expense." The goal was to create a mind-set of accessibility, to encourage people to look for creative ways to make the world more accessible. "Readily achievable" modifications might include installing grab bars, ramping a few steps, lowering telephones, adding raised letter and braille markings on elevator controls, and adding flashing alarm lights.

S. 933 also required that where structural changes were not readily achievable, covered entities had to make their services available through alternative methods: for example, coming to the doorway of a Laundromat to pick up laundry when a person could not get inside. Moreover, the bill required the provision of "auxiliary aids and services" (see Appendix F) to persons with disabilities: for example, reading a menu to persons with visual impairments so that they could fully enjoy the benefits of places of public accommodation.

The version of the ADA crafted by Senators Harkin and Kennedy did not only limit initial provisions. In one significant area they significantly expanded the scope of the original bill. Under S. 2345, only those public accommodations (see Appendix F) covered under the Civil Rights Act of 1964 had to be accessible. This principally meant places of lodging, eating, and entertainment. Service establishments such as doctors" offices, retail stores, and private clubs, were not included. S. 933, by contrast, defined within its scope virtually every privately-operated establishment that was used by the general public and affected commerce. This included places of lodging, office buildings, parks, recreation facilities, theaters, retail stores, medical facilities, and restaurants. Although this apparently broke the commitment to parity with the Civil Rights Act, advocates argued that it was consistent in spirit: just as the Civil Rights Act addressed the universe where race discrimination was an issue, the ADA covered the broader universe where disability discrimination was relevant.

The new draft of the ADA also took steps to define the original ADA's prohibition of discrimination in "broadcasts, communications, or telecommunications." S. 933 required that communications providers implement telecommunication relay services. A relay service enabled an individual using a Telecommunication Device for the Deaf (TDD)--a machine that transmits typed data over telephone lines--to communicate with someone without such a device, through an operator who would translate text to voice, and voice to text.

Another significant change from S. 2345 concerned legal actions available to remedy discrimination. S. 2345 included both administrative and civil remedies. It granted administrative agencies the authority to order "all appropriate remedial relief" and gave individuals the right to sue in a district court for both injunctive relief and monetary damages, including punitive damages." Drafters of S. 933, however, viewed these remedial provisions as extreme and politically impossible. Therefore they introduced remedies tailored to each title. Only administrative remedies were available for the public accommodations and telecommunications provisions. Private right to action was granted for employment and public services provisions. For employment discrimination, S. 933 also allowed for punitive damages.

Building Support for S. 933

Before publicly circulating the final draft of the bill, Silverstein and Osolinik submitted it to a group of individuals in the disability community for their approval. On one occasion, the two staff members were grilled for hours by persons with disabilities who objected to the apparent weakening of the bill. Osolinik tried to explain that the bill could not be passed without the proposed changes. Silverstein emphasized that the new bill remained true to the original principles. Some in the disability community, however, were outraged. "Lots of people felt let down," said Bonnie O'Day about the reactions at the spring, 1989, conference of the National Council on Independent Living (NCIL). Yet most agreed that it was dangerous to include provisions that might endanger the entire bill. Ultimately, the disability community lent its support, persuaded that it was the best that could be achieved politically. This was crucial, for a competing Republican bill might polarize the debate and kill the ADA; unity behind S. 933 made it difficult for an alternative proposal to gain a foothold.

After the disability community backed S.933, the next task for ADA supporters was to enlist the cosponsorship of members of Congress and the endorsement of President Bush. As in 1988, Liz Savage coordinated a cosponsorship drive in conjunction with House and Senate sponsors. This time the drive was even more aggressive, and it continued throughout the entire ADA deliberations. At the same time, Justin Dart, Marilyn Golden, and others throughout the disability community continued to mobilize the national grass roots network. Persons with disabilities began writing letters urging their representatives to support the ADA.

On the Senate side, ADA advocates were especially interested in enlisting the support of Senators Orrin G. Hatch (R-UT) and Robert Dole (R-KS). Hatch's support was extremely important because he was the ranking Republican on the Labor and Human Resources Committee, and the rest of the committee Republicans generally followed his lead in disability policy. In December, 1988, Senator Harkin began meeting with Hatch personally, in addition to consultations between their staffs. Harkin had hoped that Hatch's long and solid record of supporting persons with disabilities would lead to his endorsement of the bill as chief cosponsor. As with Senators Kennedy and Harkin, Hatch had personal experience with disability through his brother, who lost the use of his legs from polio. Hatch, however, had serious reservations about the bill. For example, he proposed more limited remedies and the exemption of religious groups from the public accommodations provisions. He also wanted to coordinate his position with the White House. As a result, he declined Harkin's invitation to be the lead cosponsor.

Senator Dole's support was crucial because, as Minority Leader, he could wield considerable influence over the progress of the ADA through Senate committees and on the Senate floor.

Instead, Senator Hatch directed his chief counsel, Mark Disler, to draft an alternative bill. Disler had worked for Bradford Reynolds in the attorney general's office during the Reagan administration. During the battles over President Reagan's Task Force on Regulatory Relief, Disler had formed good working relationships with Kemp and Wright and become much more knowledgeable about disability, which helped smooth working with Senator Hatch's staff. The bill Disler crafted was similar to S. 2345 in that it was short and focused on general principles of nondiscrimination. Rather than propose strong, detailed requirements as in S. 933, it gave executive agencies the responsibility and authority to create nondiscrimination standards.

Senator Hatch's actions were, nonetheless, ultimately designed to aid in the ADA's passage. A quick endorsement of the Harkin bill might have alienated other Republicans, whose support was necessary for effective implementation. Senator Dave Durenberger (R-MN), whose advocacy for people with disabilities stretched back to his tenure as chief of staff for the Governor of Minnesota in the 1960s, explained that Hatch "in effect had to stay off of the original bill in order to leverage Republican support for the final product." By drafting his own bill, Hatch paved the way for achieving a broader base of consensus and helped prevent filibustering on the Senate floor.

Senator Dole's support was also crucial because, as Minority Leader, he had the power to wield considerable influence over the progress of the ADA through Senate committees and on the Senate floor. For example, he could discourage his party from requesting that the ADA be referred to multiple committees, which could delay or even kill the bill. He could also help prevent damaging amendments from being introduced on the floor. Similar to Senator Hatch, Dole had a solid record on disability issues. He knew disability first-hand from the paralysis he incurred in World War II. On each anniversary of his injury, April 14, he gave a speech about disability on the Senate floor. In fact, he devoted his first official speech in the Senate, on April 14, 1969, to the needs of the disability community. "It is a minority group whose existence affects every person in our society and the very fiber of our Nation," said Dole. He noted that people with disabilities faced significant problems with employment, income, health care, education, rehabilitation, transportation, and access to public accommodations. Accordingly, he urged Congress to promote collaboration between the public and private sectors to improve opportunities for persons with disabilities. He asserted his commitment to make wise use of financial resources, but he wanted to do what was necessary to achieve for people with disabilities "the independence, security, and dignity" to which they are "entitled." Subsequently, in 1984, Dole established the Dole Foundation, which he dedicated to improving the employment prospects of persons with disabilities.

Nevertheless, Senator Dole had reservations about the ADA. In part, he was ambivalent because he had talked with Senator Charles E. Grassley (R-IA), Senator Harkin's fellow senator from Iowa about introducing his own bill. Dole, however, received a flood of phone calls from the disability community urging him to cosponsor Harkin's bill and abstain from introducing a competing bill. Crucial in shaping Dole's position on the ADA and encouraging him to support it was one of his staff members, Maureen West. Paul Hearne, Executive Director of NCD and a long-time associate of Dole, assisted West in educating the senator about the ADA. Dole refrained from introducing his own bill. But he also continued to withhold his support of S. 933, even though he was one of fourteen original cosponsors of S. 2345.

In addition to Senators Hatch and Dole, ADA supporters were interested in enlisting the support of President Bush and his administration. President Bush had already spoken strongly on behalf of civil rights legislation for people with disabilities on multiple occasions. And Senators Harkin and Kennedy had consulted with the administration throughout the winter and spring of 1989 for input on the development of S. 933. Sometimes these conversations were held person-to- person; at other times they were mediated by members of the disability community, such as Pat Wright and Justin Dart, who had very strong White House connections. The main goal, however, was to encourage the Bush administration take a further step and endorse the version of the ADA developed by Senators Harkin and Kennedy. Faced with the demands of forming an administration and lacking adequate technical disability expertise, however, the White House did not develop a firm position on the bill. Harkin was actually ready to introduce S. 933 in March, but he delayed its introduction at the request of the administration. By April, ADA supporters decided they simply had to move forward with the bill, with or without President Bush. Accordingly, Senator Harkin scheduled the introduction of S. 933 for May 9, 1989, at which time Congressman Coelho would also introduce the companion bill, H.R. 2273. Although ADA supporters were unsuccessful in securing the cosponsorship of Hatch and Dole and the endorsement of Bush, the congressional cosponsorship drive was effective. By May 9, the bill had acquired 33 Senate cosponsors and 84 House cosponsors.

In consultation with Congressman Coelho, Senators Kennedy and Harkin developed a strategy for maneuvering the ADA through Congress. They decided to begin the ADA deliberations in the Senate. The Senate would be more manageable because of its rules for legislative deliberations. Whereas in the House a bill went to all committees with partial jurisdiction, in the Senate a bill went only to one committee, whichever had the preponderance of jurisdiction (subsequent referrals to additional committees could be requested). Moreover, Kennedy and Harkin were chairmen of the committee and subcommittee with jurisdiction. Kennedy's Committee on Labor and Human Resources also had a comfortable Democratic majority. And the ranking Republicans of both the committee and subcommittee--Senators Orrin Hatch and Dave Durenberger--were strong supporters of disability policy. Furthermore, the Senate had a better working relationship with the administration. Given the importance of bringing the administration on board, it was wise to tailor strategy to its interests.

Senators Harkin and Kennedy hoped to push the ADA through the Senate as rapidly as possible with minimal alterations. They feared that lengthy deliberations would increase the chance of losing control of how the ADA was characterized in public debate. Kennedy thus proposed going to mark-up before the Fourth of July recess and to the Senate floor before the August recess. The House would then proceed with the version passed by the Senate, which would help limit the discrepancy between House and Senate versions and smooth conference deliberations.

Senate sponsors scheduled three hearings for May 9, 10, and 16; they devoted April to preparing for them. (See Appendix D for a chronology of legislative action on the ADA.) They hoped to prevent any surprises by getting the facts in order and crafting responses to anticipated opposition. Silverstein turned to those who knew disability the best: members of the disability community. He developed a list of about 100 questions and asked representatives of the disability community to explain, based on their experiences at the local level, how various covered entities would respond to ADA provisions. Osolinik and Silverstein then prepared thick briefing books based on the responses. They also worked with the disability community to select witnesses to testify on each aspect of the bill. Unlike the hearings of 1988, the 1989 Senate hearings would include very detailed, technical analyses of the ADA, with a balance of testimony from those who supported the legislation outright and those who promoted changes. Accordingly, the business community and other covered entities were gearing up for the hearings and working with Senate leaders to identify effective witnesses. On May 5, for example, just before the bill's introduction, the U.S. Chamber of Commerce sponsored the first of several meetings for all business organizations to discuss their strategy for the ADA, which culminated in their testimony before Congress. Subsequently, a group of business organizations formed a coalition called the Disability Rights Working Group.

Senate Hearings and the Quest for Bipartisanship

Senate Hearings on S. 933 began in the Dirksen Senate Office Building on Tuesday morning, May 9, 1989. Ranking minority member Senator Hatch set the stage for the hearings in his opening statement. "I support a comprehensive civil rights bill for persons with disabilities," Hatch declared unambiguously. But he also stated he had "serious concerns." Hatch challenged the extension of public accommodations provisions beyond those establishments covered under the Civil Rights Act of 1964. He promoted an exemption for small businesses. He also opposed provisions for remedies that included monetary and punitive damages. Moreover, Hatch stated that his reservations concerning S.933 might compel him to introduce his own bill, or support a different bill, presumably one introduced by Senator Dole.

"We can be productive, if you will give us that right, give us that opportunity. That is all we ask for, nothing more, but definitely nothing less."

--Congressman Tony Coelho

Traditionally the administration offers the lead testimony on major bills, but by May 9 the Bush administration had still not developed a formal position. In fact, the White House had to cancel a May 1 Rose Garden press conference with Senate leadership, which had been designed to promote the ADA. Consequently, Congressman Coelho was the lead witness. He was selected to open the deliberations not only because he was the sponsor of the identical ADA bill introduced in the House; he also poignantly symbolized the ADA. In his senior year of college, Coelho learned he had epilepsy--reputed by some to be demonic possession. As a result, he was barred from the Catholic priesthood and his familial relationships were severely strained. "I was suicidal and I was down," Coelho said of his experience with discrimination. But Bob Hope took him into his own home and encouraged him to pursue his ministry through public service.

Congressman Coelho met with considerable success after following Hope's advice and beginning a government career. Elected to Congress in 1978, he became Chairman of the Democratic Congressional Campaign committee in 1981. Five years later, he was elected Majority Whip. He also became a national leader in disability issues, which included service as Director of the Epilepsy Foundation of America (EFA). Coelho therefore spoke not only with the authority be stowed upon him from the Democratic leadership, but also as an example of the potential of persons with disabilities. "Tony was sort of the epitome of what a person with a disability can do," said Dornatt of his staff, "and what they can achieve given a fair shake and given a chance." Coelho echoed this theme in his remarks at the Senate hearing: "We can be productive, if you will give us that right, give us that opportunity. That is all we ask for, nothing more, but definitely nothing less."

In addition to speaking about his personal experiences, Congressman Coelho addressed Senator Hatch's remarks and stressed the need for bipartisanship: "We very much want you on board and very much need your support," he entreated. "We would prefer that you not introduce your own bill," he added, urging Hatch to work toward a common bill instead. Hatch replied by pledging his best efforts to develop consensus. "I would love nothing better" than to cosponsor this bill, Hatch said. "But in its present form, I cannot." Only minutes into the first hearing, it was clear that considerable work lay ahead to achieve bipartisanship and shepherd the ADA through Congress. The prospect of a competing bill made cooperation much more critical. The hearings were an opportunity to find a solution.

As in 1988, persons with disabilities presented powerful testimony about the need for the ADA by describing their personal experiences. "There is not one disabled American alive today who has not experienced some form of discrimination," I. King Jordan said. The most vivid imagery came from Justin Dart. In addition to his carefully crafted and eloquent words, Dart brought visual aids. He presented the committee with a box of discrimination diaries and letters that he and others had gathered from around the country (see Appendix E). Yet, Dart acknowledged, no document could truly demonstrate the impact of discrimination. As a supplement, Dart