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

Toward Independence and The ICD Survey of Disabled Americans

“The Contribution of this Council and its continued existence,” Chairperson Parrino asserted at the quarterly NCD meeting on January 23, 1985, “will rest almost entirely on the content of our February, 1986, Report to the President and how it is judged by the president and the Congress."²⁴ She urged NCD members to unite in common purpose and pledge their highest commitment. In April, as preparation for NCD meetings and consumer forums dominated the better part of NCD’s time, Frieden directed NCD to clear the table and focus almost exclusively on the report.²⁵

To make the report manageable, Frieden and Burgdorf presented Council members with a list of 41 potential topics and recommended that they focus on eight to ten of them. Since most of the 1983 council still served as members, the 1983 report was fresh in their collective memory. Building on and narrowing its earlier report, NCD settled on eleven topics. One of them was “Unified disability laws including civil rights.” Some members doubted “whether the subject of civil rights is a topic that should be addressed in the 1986 report, in view of the breadth and complexity of the subject.” But others contended “there is no question about its central importance” and noted that it was consistently discussed at the consumer forums.²⁶ To make the concept more palatable to reluctant NCD members and ultimately to the Reagan administration, NCD presented the issue as an “equal opportunity law” rather than “civil rights.” The former coincided with independence and self-reliance; the latter smacked of affirmative action.

In June, NCD members held working sessions to sketch out the content of each proposed topic and finally settled on the following ten topics: equal opportunity laws, employment, disincentives to work under Social Security laws, prevention of disabilities, transportation, housing, community-based services for independent living, educating children with disabilities, personal assistant services, and coordination of disability policy and programs. NCD chose to take responsibility for the report rather than simply contracting an outside organization to do it. Because of the logistical problems posed by meeting only four times a year, primary responsibility for designing the report fell to Frieden and Burgdorf. They committed to developing detailed and thorough topic papers to document their findings. The project was a model of teamwork in which staff members and a few consultants wrote most of the essays and NCD members worked with them closely in the review process.²⁷

One recurring theme in NCD’s discussion of the papers was the cost of disability policy to the Federal Government. NCD members generally agreed not to recommend any funding increases.²⁸ Jeremiah Milbank, for example, suggested that any request for federal dollars required anticipation of “massive Federal cost-saving benefits with positive human results."²⁹ Indeed, NCD took care not to embarrass the president by presenting recommendations that would require large funding increases. Chairperson Parrino explained that NCD’s recommendations were “designed to improve the ability of persons with disabilities to live with dignity and as independently as possible within their communities.” By following them, she added, “current Federal expenditures for disability can be significantly redirected from dependency-related approaches to programs that enhance independence and productivity of people with disabilities, thereby engendering future efficiencies in federal spending."³⁰ This fiscal conservatism was crucially important for securing the later success of the ADA. It demonstrated that efforts to improve the lives of persons with disabilities could coincide with fiscal restraint, and thus win the support of skeptical members of Congress.

Moreover, NCD rooted the ADA in Republican soil, preventing it from being discarded as a “liberal” bill. In fact, NCD members endeavored to depoliticize their job and focus simply on what was most important for persons with disabilities. Frieden, Burgdorf, and others praised NCD for this approach.³¹ Dart captured the spirit in a statement to NCD about the direction of disability policy: “Major emphasis should be given to the absolute necessity for all who believe in the fulfillment of the American dream . . . to rise above the traditional limits of politics and personality and to unite in support of the fundamental human rights of disabled people.³²

Also crucial to the ADA’s eventual success was the approach NCD took in developing the report. As he did in 1982, Dart personally financed another series of public forums, visiting every state to learn what persons with disabilities throughout the country thought were the most important issues. In the same vein, NCD devoted its 1985 “consumer forums” to soliciting feedback about the various topic papers. Moreover, Frieden consulted with disability organizations from around the country constantly. He also developed a list of approximately 50 people from the grass roots that he spoke to on at least a monthly basis. It was, said Frieden, “ironic” that supposedly “elitist” Republicans were so interested in cultivating grass roots collaboration.³³ Nevertheless, this extensive, nationwide involvement helped give the disability community a sense of ownership over NCD’s activities and helped form important links that would pay dividends later. By the end of 1986, NCD had crafted over 400 pages of policy analyses; the disability community had helped to refine them.

The philosophy of the disability rights movement manifested itself in the report’s title. At a brainstorming session, staff reflected on the independent living movement and on Dart’s findings. Facilitating independence through equal participation, they thought, must be the ultimate goal of disability policy and evident in the report’s title. But the goals were yet to be reached, so they focused on policy direction. They thus conceived an appropriate title: Toward Independence.

NCD prioritized the advancement of “equal opportunity laws” for people with disabilities as its primary recommendation. Although Congress had enacted several anti-discrimination laws for persons with disabilities, council members noted, coverage for persons with disabilities paled in comparison to those afforded racial minorities and women. Reminiscent of the 1983 report, NCD therefore proposed that Congress “enact a comprehensive law requiring equal opportunity for individuals with disabilities, with broad coverage and setting clear, consistent, and enforceable standards prohibiting discrimination on the basis of handicap."³⁴ This time, however, the proposal came with a thorough explanation for why such an approach was necessary to facilitate the employment and general life satisfaction of persons with disabilities. It also delineated what such a law should entail.

With the support of Frieden and newly-hired staff member Andrea Farbman in January, 1986, Burgdorf devoted a weekend to synthesizing the topic papers into a short readable report, which specified over forty different recommendations. Pressed for time, NCD contracted at the Federal Prison Industry to publish the document rather than risk the potential for delay with the Government Printing Office. About a week before the scheduled release, however, with 10,000 copies of Toward Independence prepared for distribution, Frieden received a call from Bob Sweet at the White House. Sweet threatened to block the report because the White House allegedly could not support it. “This report is so liberal, Ted Kennedy wouldn’t produce it,” he told Frieden in reaction to the report’s ambitious proposals.³⁵ But Sweet’s superior—highly-respected physician and public health expert, Dr. William L. Roper—quelled the conflict after being persuaded by Frieden that the basic principle of Toward Independence was that all Americans should share in society. He simply directed Frieden not to attach the presidential seal to the report.

NCD officially presented Toward Independence, accompanied by letters of transmittal, to President Reagan, President of the Senate George Bush, and Speaker of the House James C. Wright (D-TX), on February 1, 1986.* NCD also scheduled a press release for January 28, 1986. But media attention that day was riveted to the explosion of the Space Shuttle Challenger, leaving few reporters and little time for Toward Independence.

*NCD members at the time were: Sandra S. Parrino, Chairperson; H. Latham Breunig, Robert V. Bush, Justin W. Dart, Joe S. Dusenbury, John S. Erthein, R. Budd Gould, Hunt Hamill, Marian N. Koonce, Nanette Fabray MacDougall, Michael Marge, Roxanne S. Vierra, Henry Viscardi, and Alvis Kent Waldrep. NCD staff were: Lex Frieden, Executive Director; Brenda Bratton, Ethel D. Briggs, Robert L. Burgdorf, Marilynne Gisin, and Naomi Karp. National Council on the Handicapped Fellows were: Janet Anderson and Laura Rauscher. Consultants for Toward Independence were: Elizabeth Defay, Margaret A. Nosek, and John Raisian.

The NASA catastrophe also canceled another Council arrangement: a meeting with President Reagan to present the report in person. Consequently, Vice President Bush and Boyden Gray met with Parrino, Dart, Milbank, and Frieden. The White House meeting was noteworthy because Bush exhibited tremendous interest in NCD’s report. A ten-minute photo-op evolved into a substantive discussion that lasted nearly an hour. Bush recounted his own personal experience with disability through family members. Evidently, as Frieden recalled, Bush had familiarized himself with the report before the meeting: he talked about some of the issues in detail, namely education and equal opportunity laws. Bush ended the meeting without a single criticism of NCD’s recommendations and with a promise that he would pass the report along to Reagan. He also said he wished he could do more, but noted that there was only so much he could do as vice president.³⁶

Although NCD’s press conference and meeting with President Reagan were canceled, the agency’s third public relations event went through as planned: a reception on Capitol Hill, where many members of Congress gathered to accept the report. Senator Weicker, Senator Paul Simon (D-IL), and Congressman Steve Bartlett (R-TX), among others, offered remarks.³⁷

NCD ultimately distributed over 20,000 copies of Toward Independence to legislators, government officials, disability advocates, and disability organizations.³⁸ DIMENET, the computer network started under the aegis of NCIL, received permission from NCD to type the report and make it available on the Internet.³⁹ The report “made a big splash,” as Bonnie O’Day, at the time the director of an independent living center in Norfolk, Virginia, put it.⁴⁰ Thousands of people across the country read it and talked about it. The attraction was not the novelty of the proposals it contained: virtually every issue and recommendation presented by NCD had been initiated or proposed at the state and local level. Rather, the report was significant because it represented a proposal for a national, comprehensive approach to disability policy. Moreover, it carried the clout of being the product of a federal agency. Regardless of the content of the report, simply producing a comprehensive analysis of disability programs was significant in the stature it gave to disability as part of the national policy agenda.

With respect to Kingdon’s analysis, Toward Independence can be seen as a body of policy solutions. Of special importance was NCD’s prioritization of a comprehensive equal opportunity law as necessary to achieve functional independence and social participation for persons with disabilities. But at this stage it represented only a potential solution. Getting the issue on the legislative agenda would require further documentation that the lack of such a law was a desperate problem. An influential national poll helped this process along.

As NCD deliberated the topic papers comprising Toward Independence, one of its members, Milbank, voiced the concern that NCD’s conclusions might not adequately reflect what average Americans with disabilities thought. He feared that the forums sponsored by Dart and NCD were too selective. Unfortunately, there was no substantive survey data on how having a disability affected a person’s ability to participate in the life of the community. This led Milbank to contact his friends at the polling agency Louis Harris and Associates, namely its president, Humphrey Taylor, who agreed to conduct a study. NCD staff and members contributed to the development of the questions and structure of the survey. The International Center for the Disabled (ICD), where Milbank served as Chairman of the Board, provided most of the funding. Although NCD hoped the results would be available in time for inclusion in Toward Independence, it was finished soon after and published in March, 1986, with the title: The ICD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream.⁴¹

“The purpose of the survey,” explained ICD Executive Director John Wingate, “was to obtain data on disabled people’s experiences and attitudes that would provide a clear information framework of NCD’s recommendations on public policy for disabled people."⁴² The nationwide survey was based on 1,000 telephone interviews with a national sample of non-institutionalized disabled persons aged sixteen and above. In some respects it paralleled the significance of NCD’s report Toward Independence. While other organizations had conducted surveys, this was the first comprehensive survey of persons with disabilities that solicited their perceptions of their own quality of life. It provided solid data that could document the extent of problems faced by persons with disabilities and help guide fruitful directions for policy development. Significantly, it suggested that federal disability programs had improved the lives of persons with disabilities, which warranted continued policy development and federal funding.

The Harris poll found that the prevalence of disability for noninstitutionalized persons aged 16 and over was 15.2% of the United States, or about 27 to 28 million people. In an analysis of the Harris results, NCD concluded that the addition of institutionalized persons, children, and households that could not be reached by telephone would place the total number of persons with disabilities somewhere near the oft-quoted figure of 36 million.⁴³ The poll also presented a series of significant, quantified findings about this group of Americans:

• 72% said their lives had been at least “somewhat better” in the past decade.

• 67% said the federal policies had helped at least “somewhat."⁴⁴

• 40% did not finish high school, compared with 15% in the non-disabled population.

• 50% reported household incomes less than $15,000, compared with 25% among the non-disabled population.

• 56% reported that disability prevented desired levels of social and community participation.

• 49% identified lack of transportation as a barrier to social and community participation.

• 67% aged 16 to 64 were not working; 66% of those not working said they would like to be employed.

• Employment correlated with levels of education, income, life satisfaction, self-perception as disabled, and perception of life potential.

• 95% advocated increased public and private efforts to educate, train, and employ persons with disabilities.

• 74% supported implementation of anti-discrimination laws affording disabled persons the same protections as other minorities.

For the most part, these findings were not surprising. But they served the crucial role of documenting what were previously subjective assessments. And the survey was a ringing endorsement of initiatives to help disabled Americans find work. Unemployment more than anything else seemed to define disability, and the correlation between employment and life satisfaction cried out for attention. NCD had argued strongly in Toward Independence that civil rights protections would help improve accessibility and facilitate employment. The poll affixed numbers to a real and pressing problem and functioned as a nationwide endorsement of NCD’s report. With respect to Kingdon’s policy analysis, this linked two policy streams: problems and solutions. Frieden asserted: “I doubt that the recommendations in Toward Independence, and particularly [those regarding] civil rights, would have been taken as seriously by the policy makers had we not had the data."⁴⁵

24. NCD Minutes, January 23–25, 1985, p. 6–7.

25. NCD Minutes, April 29–May 1, 1985, p. 6.

26. Ibid., p. 15.

27. Primary responsibility for topic papers fell to the following authors: Research Specialist Robert Burgdorf and NCH Fellow Janet Anderson on Housing; Adult Services Specialist Ethel Briggs and Children’s Services Specialist Naomi Karp on Employment; Consultant Betty Defay on Disincentives to Work; Consultant Margaret Nosek on Attendant Services and on Independent Living; Executive Director Lex Frieden on Coordination; Research Specialist Robert Burgdorf on Equal Opportunity Laws; NCH Fellow Laura Rauscher on Transportation; NCD Member Michael Marge on Prevention; and Michael Marge and Naomi Karp on Children’s Education.

28. NCD Minutes, August 12–14, 1985, p. 12.

29. Ibid., pp. 19–20.

30. National Council on the Handicapped, Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons With Disabilities—With Legislative Recommendations (February 1, 1986), pp. ii–iii.

31. Frieden, interview, December 28, 1997; Robert Burgdorf, interview, February 19, 1997.

32. NCD Minutes, January 29–30, 1986, p. 2.

33. Frieden, telephone conversation with author, May 18, 1997.

34. Toward Independence, p. 18.

35. Quotation attributed to Sweet by Frieden. Frieden, interview, December 28, 1997.

36. Frieden, telephone conversation with author, May 18, 1997.

37. Frieden, telephone conversation with author, March 26, 1997.

38. Frieden, interview, December 28, 1996.

39. Rowland Sykes, interview, March 5, 1997.

40. Bonnie O’Day, interview, February 20, 1997.

41. International Center for the Disabled, The ICD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream (New York: Louis Harris and Associates, Inc., 1986).

42. NCD Minutes, January 29–30, 1986, p. 3.

43. National Council on the Handicapped, On the Threshold of Independence: Progress on Legislative Recommendations from Toward Independence (January 1988), p. 13.

44. The Harris poll considered this support for government programs unique: “The strength of this endorsement for a federal program is unsurpassed since the Harris firm began measuring public support for federal programs and laws.” ICD Survey, p. 20.

45. Frieden, interview, December 28, 1996.