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

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.³⁰ 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."³¹ 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.

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.³²

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."³³

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 nondisabled 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."³⁴

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."³⁵

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."³⁶ 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.³⁷ 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.³⁸ 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.³⁹

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.⁴⁰ 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.⁴¹

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 “psychologically fit.” Later, after switching majors, she graduated summa cum laude.⁴²

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.⁴³

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."⁴⁴

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.⁴⁵

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."⁴⁶

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.

*In this context, “integrated” schools are those that did not isolate persons with disabilities in separate educational facilities, as opposed to racially integrated schools.

30. Senator Tom Harkin, statement, Senate Committee on Labor and Human Resources and House Committee on Education and Labor, Joint Hearing Before the Subcommittee on the Handicapped of the Committee on Labor and Human Resources, United States Senate, and the Subcommittee on Select Education of the Committee on Education and Labor, House of Representatives, 100th Cong., 2nd sess., September 27, 1988, S. Hrg. 100-296, Serial No. 104, reprinted in Leg. Hist., vol. 2, p. 1019.

31. Senator Lowell Weicker, statement, ibid., p. 930.

32. Mary Linden, statement, ibid., pp. 986–87.

33. Jade Calegory, statement, ibid., pp. 992–93.

34. Sylvia Piper, statement, ibid., pp. 995–97.

35. Judith Heumann, statement, ibid., pp. 1002–03.

36. Belinda Mason, statement, ibid., pp. 1004–06.

37. Major Owens, interview, April 29, 1997.

38. William Cavanaugh, statement, House Committee on Education and Labor, Hearing Before the Subcommittee on Select Education of the Committee on Education and Labor, House of Representatives, 100th Cong., 2nd Sess., October 24, 1988, Serial No. 100-109, reprinted in Leg. Hist., vol. 2, p. 1067.

39. Bonnie O’Day, statement, ibid., p. 1076.

40. Nancy Husted-Jensen, statement, ibid., p. 1220.

41. Eileen Healy Horndt, statement, ibid., p. 1117–18.

42. Barbara Waters, statement, ibid., p. 1162.

43. Patricia Deegan, statement, ibid., p. 1251.

44. Michael Oestreicher, statement, ibid., p. 1129.

45. Cynthia L. Miller, statement, ibid., pp. 1200–02

46. Denise Karuth, statement, ibid., pp. 1225–26.