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

Putting the ADA on the Legislative Agenda: The National Council on Disability

When Senator Lowell P. Weicker, Jr. (R-CT) and Congressman Tony Coelho (DCA) first introduced the Americans with Disabilities Act in April, 1988, many persons in and out of the disability community did not give it a fighting chance. During the 1980s the disability community was primarily on the defensive—withstanding a number of assaults and hoping simply to maintain its legislative and financial ground. Taking the offensive and introducing comprehensive civil rights legislation, when existing laws were not even adequately enforced, seemed unrealistic. In 1985, for example, when disability activist Duane French encountered people who talked about the need for comprehensive civil rights for people with disabilities, his response was: “Not in my lifetime, pal!"¹ Where did the idea for the ADA come from? How did it make its way to Congress as a viable policy option? And why at this particular moment?

Accounting for why some issues and not others make their way to the legislative agenda is a favorite pastime of political scientists. Although no legislation follows a generic model precisely, one compelling analysis is useful in understanding the ADA’s development. John Kingdon describes the Federal Government as an “organized anarchy.” According to Kingdon, public policies are not created through a systematic, orderly process of establishing goals, identifying problems, analyzing alternatives, and making rational choices. Nor is there an incremental, inexorable development over time. Rather, the process is messy. Kingdon contends that at any given moment three independent “policy streams” are active: problems (conditions that demand corrective attention), policies (proposals made by various academics, government staff members, and lobbying groups), and politics (swings in national mood, elections, a new administration, and ideological distribution shifts). Problems emerge and recede; pet solutions are developed even where there is no concrete problem; and the political landscape constantly shifts. However, at particular, limited moments in time—”windows of opportunity”—each of these streams merge and offer the potential for action: “A problem is recognized, a solution is available, the political climate makes the time right for change, and the constraints do not prohibit action."²

Asked to explain why the ADA succeeded, numerous participants in the deliberative process asserted that the “timing” was right. Indeed, the ADA appears to have occurred during a window of opportunity. We have seen how during the 1980s a disability rights movement blossomed, characterized by grass roots political activism, important networking, and tangible legislative success. This developed fertile soil where a civil rights seed might flourish. But that was only part of the equation. There needed to be a clearly defined problem (for society, not just isolated individuals), coupled with a concrete solution, and a political climate to legitimate it. This complicated process also took shape during the 1980s. Although numerous sources helped give life to the ADA, the vehicle that united these elements and brought the bill to Congress was a little-known federal agency called the National Council on the Handicapped (NCD).*

*Prior to November 7, 1988, when Congress changed the title of the National Council on the Handicapped to the National Council on Disability (NCD) to reflect changes in contemporary language use, the appropriate acronym was NCH. But to avoid confusion, since the time period covered in this work overlaps the name change, the latter acronym, NCD, will be used consistently, even for the time during which the agency went by the name of the National Council on the Handicapped.

1. Duane French, conversation with author, June 5, 1997, Renaissance Hotel, Washington, D.C.

2. John W. Kingdon, Agendas, Alternatives, and Public Policies (Boston: Little, Brown, 1984), p. 93.

National Council on the Handicapped

The history of NCD dates to 1972, when Congress proposed an Office for the Handicapped as part of the Rehabilitation Act. Its purpose would be to review the programs of the Rehabilitation Services Administration (RSA) and evaluate and coordinate all federal programs affecting persons with disabilities. But Congress eliminated the Office in the compromise with President Nixon. The idea resurfaced in May, 1977, when delegates from every state gathered at the White House Conference on Handicapped Individuals. The participants reviewed federal disability policy and offered legislative recommendations. Among their conclusions was that the incoherence and intrinsic tensions of various disability policies required an agency to bring it to order. The Carter administration afforded Congress to take action. Congress passed legislation creating the National Institute of Handicapped Research (NIHR, now NIDRR), the Title VII independent living program, and the “projects with industries” program to assist disabled persons starting their own businesses. Congress also used the shift in political climate to implement the White House Conference’s recommendation by passing legislation that created NCD.

In addition to directing NCD to establish policies for NIHR and advise the RSA Commissioner about RSA policies, Congress charged NCD to “review and evaluate on a continuing basis all [federal] policies, programs, and activities” concerning persons with disabilities, and to report on its activities.³ NCD would be composed of fifteen presidential appointees, each serving three-year terms and with five new members each year. NCD could hire up to seven technical and professional staff, conduct hearings, and appoint advisory committees. It was housed in the Department of Health, Education, and Welfare (HEW).

NCD’s activities prior to 1984 are not well documented.⁴ But the skeletal framework for the ADA was laid in 1983. After President Ronald Reagan entered office in 1981, he decided to disband the existing council and appoint all new members. On October 4, 1982, he selected Joe Dusenbury, previously the Commissioner of the South Carolina Vocational Rehabilitation Services and President of the National Rehabilitation Association, as NCD Chairperson. NCD apparently had a mixed record, and the Education Department urged Dusenbury to submit a credible annual report, on time, to help improve NCD’s reputation.⁵ To help direct NCD activities, Dusenbury appointed two Vice-chairpersons: Justin Dart and Sandra Parrino. Dart was the only NCD member Dusenbury knew before joining NCD; they had worked together on the President’s Committee on the Employment of the Handicapped. NCD members turned immediately to the task of the report, and decided that, in meeting NCD duties, they should prepare an ambitious proposal for disability policy.

They also decided that if the report were to have any legitimacy, it needed to be the product of a nationwide effort. Thus began Justin Dart’s famous public forums. Authorized by Dusenbury and using his own funds, Dart traveled to every single state to discuss disability policy and obtain feedback for NCD’s policy report. Dart, who had contracted polio in his teens, went in his wheelchair and with his trademark cowboy hat. On this campaign he met with over 2,000 people, including persons and parents of persons with disabilities, government officials, and disability professionals. Among the most frequently-cited problems were discrimination and the inadequacy of laws to protect the rights of persons with disabilities.⁶ This was by no means Dart’s introduction to civil rights issues. On the contrary, Dart had become an impassioned advocate for the civil rights of African Americans as a student at the University of Houston, where he argued that black students should be allowed to attend the all-white university. By the 1980s, Dart viewed disability rights in a broader context of human rights and as a logical and necessary extension of the civil rights guaranteed for African Americans.

Dart and Dusenbury took the feedback obtained at public forums to heart in designing the NCD report, in which the spirit and content of human rights, civil rights, and disability rights are pervasive. Persons throughout the nation reviewed the various iterations of the document, so the final product was truly national in origin. Issued in August, 1983, the National Policy on Disability built on the independent living philosophy: pursuit of “maximum independence, self-reliance, productivity, quality of life potential and equitable mainstream social participation.” While individuals must assume primary responsibility for their lives, the report said, the Federal Government had a critical role to play. This included 22 different policy areas in need of attention, ranging from accessibility issues, to employment, education, and research. Part of the government’s obligation, contended the report, was “to develop a comprehensive, internally unified body of disability-related law which guarantees and enforces equal rights and provides opportunities for individuals with disabilities,” including integrating persons with disabilities into all existing civil rights legislation. “In matters of fundamental human rights,” the report declared in vintage Dart form, “there must be no retreat."⁷

This was not the first call for a comprehensive body of civil rights law protecting persons with disabilities. State and local governments throughout the nation were passing a multitude of laws and constitutional amendments—some amending civil rights legislation, others creating new disability-specific provisions.⁸ Others in the disability community had talked about it.⁹ The NCD report, however, was a powerful declaration that also had the backing of a federal agency.*

Unfortunately for NCD, the Reagan administration did not take well to the document. In fact, Dusenbury had to fund the printing and distribution of the document with private funds because the administration would not support it. NCD did not circulate the document widely, distributing it primarily to state and national legislators, and little action was taken by legislatures. Dusenbury subsequently drew the ire of the Reagan administration when he refused to support its introduction of legislation to disband the vocational rehabilitation program. Later that year, the White House asked Dusenbury to step down from the Chairmanship, under the pretext of instituting a one-year term for the Chairperson.¹⁰ In his place, Vice-chair Parrino became the Chairperson.

Yet before Dusenbury stepped down (in spite of the Department of Education’s insistence that he have no direct contact with Congress), he and NCD Executive Director Harvey Hirshi lobbied Congress to make NCD an independent agency, so that it would not have its hands tied by the administration, particularly the Department of Education. Congress granted NCD its request in the 1984 amendments to the Rehabilitation Act, claiming that “the Council has not been able to meet congressional intent for an independent body to advise on all matters in the Government affecting handicapped individuals."¹¹

NCD’s independence, however, also reflected Congress’s dissatisfaction with the agency’s operation. Some members of Congress had even advocated disbanding NCD. But others saw the potential for a centralized evaluation of a patchwork of disability programs as requested by the White House Conference on Handicapped Individuals.¹² As a result, in addition to making NCD an independent agency, Congress issued a mandate that NCD produce a comprehensive analysis of federal disability programs and policy by February 1, 1986. It was “kind of a test” of NCD’s mettle, an ultimatum, and the future of NCD’s authorization hung in the balance.¹³ Congress demanded a “priority listing” of federal disability programs according to the number of individuals served and the costs of such programs. Congress also requested that NCD evaluate the degree to which federal disability programs “provide incentives or disincentives to the establishment of community-based services for handicapped individuals, promote the full integration of such individuals in the community, in schools, and in the workplace, and contribute to the independence and dignity of such individuals."¹⁴ Members of Congress wanted to know: was the Federal Government promoting dependence?

Congressman Steve Bartlett (R-TX) appeared before NCD on April 30, 1984, to explain the significance of the challenge that lay ahead. “You are to advise Congress in a whole new approach, a whole new concept,” he said, “on how to decrease dependence and increase independence.” This, he suggested, represented what the disability community knew and that Congress was only reluctantly recognizing: “Sometimes Federal laws or provisions in Federal laws are the worst enemy of independence."¹⁵ According to NCD’s minutes, Bartlett emphasized that “Congress is not looking for more programs, more maintenance grants, and larger appropriations.” Instead, NCD should “look for ways to convert existing maintenance dollars to help recipients achieve independence."¹⁶ Disability policy was therefore not only about improving the lives of persons with disabilities; curtailing dependence also helped minimize the federal cost of disability.¹⁷

By reviewing federal programs NCD might actually reduce government expenditures. Thus, while many were surprised by NCD’s subsequent actions, these goals for NCD substantially coincided with President Reagan’s philosophy. Although Republicans and the disability community might seem “strange bedfellows,” wrote Evan Kemp in a compelling Washington Post article, “their philosophical similarities are striking.” He explained: “Both have accused big government of stifling individual initiative. Both have advocated that only the truly needy should receive welfare and that others should be given the opportunity to work and to become self-reliant and responsible citizens.” As an example of excessive government, Kemp noted that Social Security benefits for people with disabilities had risen 400 percent in just seven years. If physically and mentally disabled persons became wholly or partially self sufficient, opined Kemp, there would be “more taxpayers and fewer tax users—the ultimate Reagan objective."¹⁸ Patricia Owens, Associate Commissioner for Disability in the Social Security Administration, reinforced this link at an appearance before NCD. “The Administration wants a program that encourages people to return to work,” reported NCD’s minutes.¹⁹ Motivations to improve the lives of persons with disabilities intertwined with attempts to reduce dependence on government and federal outlays. The subsequent work of NCD reflected this dual concern.

Although NCD now carried new independence, it remained substantively beholden to both the administration, which held the purse strings, and Congress, which controlled authorization and appropriations.²⁰ Nevertheless, the establishment of NCD as an independent agency heralded a decisive shift. Congress now prioritized recommendations concerning the entire sweep of disability policy over such specific responsibilities as overseeing NIHR. And NCD’s new identity as an independent “think tank” gave increased stature to disability as a policy. “For the first time, disability as an issue is institutionalized, by statute, in the structure of the Federal Government,” said John Doyle, who left his post on the Senate Subcommittee on the Handicapped for six months to help NCD in its transition.²¹ The actions of the disability community were clearly gaining attention, and the themes of independence and community integration were working their way into national policy directives.

Chairperson Parrino accepted the heightened responsibilities for NCD eagerly and passionately.²² She was a longtime advocate for people with disabilities based on her experience in raising a child with a major physical disability. In Briarcliffe Manor, New York, Parrino had become a leading spokesperson for parents of persons with disabilities and helped obtain improved transportation and voting accessibility for disabled persons. Under her leadership, NCD met its statutory requirements by holding four quarterly meetings each year. These public meetings rotated around the country, and often met in conjunction with “consumer forums” designed to solicit the views of persons in the disability community. Although NCD attended to the requirements to monitor NIHR, RSA, and explored the ideas of its various members, it increasingly turned its attention to satisfying Congress’s mandate to prepare a report, which imposed heightened work demands. This required hiring new staff.

Parrino and Dart recruited Lex Frieden, who initially agreed to serve for two years as Executive Director. Frieden had founded the Independent Living Research Utilization Program, an independent living technical assistance program, in 1977, and had earned great respect within the independent living community. In the early 1980s, he worked closely with Dart on the Texas Governor’s Committee for the Employment of the Handicapped. And in 1984, coincidentally, he testified before Congress to promote a blue-ribbon panel to evaluate federal programs, which culminated in NCD’s mandate. Meeting that requirement was precisely the kind of task-directed job Frieden relished.

Frieden assumed NCD’s reins in December, 1984, and immediately turned to the task of finding high quality staff to support him. He hired Ethel Briggs, who had extensive experience in vocational rehabilitation, as Adult Services Specialist. Attorney Robert Burgdorf filled the Research Specialist position. Burgdorf had actually sought out the job when he heard of NCD’s new responsibilities. He had devoted much of his career to promoting disability rights, and saw this as an opportunity to continue his campaigns.²³ Naomi Karp joined Frieden as Children’s Services Specialist (on detail from NIHR), and Brenda Bratton became Secretary. Having acquired independence, additional staff, and a $500,000 budget, NCD was now able to face its growing responsibilities with increased zeal.

*NCD members at the time were: Joe S. Dusenbury, Chairperson; Sandra Swift Parrino, Vice-chairperson; Justin Dart, Vice-chairperson; Latham Breunig, Robert V. Bush, John Erthein, Budd Gould, Hunt Hamill, Marian N. Koonce, Carmine R. Lavieri, Nanette Fabray MacDougall, Michael Marge, Roxanne S. Vierra, Henry Viscardi, and Alvis Kent Waldrep.

3. Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendments of 1978, Public Law, 95-602, 95th Cong., 2nd sess., § 401(4).

4. Minutes of the National Council on the Handicapped date from 1984 onward. The only report available prior to 1984 is the 1983 report, National Policy for Persons with Disabilities.

5. Joe Dusenbury, interview, March 3, 1997.

6. Michael Marge, interview. December 27, 1997.

7. National Council on the Handicapped, National Policy for Persons with Disabilities (August 1983).

8. See, for example, U.S. Commission on Civil Rights, Civil Rights Issues of Handicapped Americans: Public Policy Implications (Washington, D.C.: [1980]), especially the state statutes printed as exhibits.

9. Robert Burgdorf, interview, February 19, 1997.

10. Dusenbury, interview.

11. U.S. Senate Committee on Labor and Human Resources, Senate Report No. 98-168, to accompany S. 1340, May 23, 1983, reprinted in 1984 USCCAN, p. 32.

12. Lex Frieden, interview, December 28, 1997.

13. Frieden, interview, December 27, 1997.

14. Rehabilitation Amendments of 1984, Public Law 98-221, 98th Cong., 2nd sess., § 142(b).

15. NCD Minutes, April 30–May 2, 1984, p. 6.

16. Ibid.

17. Frank Bowe made this argument in Rehabilitating America: Toward Independence for Disabled and Elderly People (New York: Harper & Row, Publishers, 1980).

18. Evan J. Kemp, Jr., “Stop ‘Caring for’ the Disabled,” The Washington Post, June 7, 1981.

19. NCD Minutes, August 12–14, 1985, pp. 2–4.

20. Frieden, interview, December 27, 1997.

21. NCD Minutes, April 30–May 2, 1984, p. 3.

22. Sandra Parrino was not available to participate in an interview for this project.

23. Burgdorf, for example, joined with Christopher G. Bell to author the comprehensive analysis of “reasonable accommodation” in disability rights policy for the U.S. Commission on Civil Rights, Accommodating the Spectrum of Individual Abilities.

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.

Drafting the ADA

As Frieden’s successor Paul Hearne observed in 1988, NCD’s preparation of Toward Independence and instigation of the ICD Survey helped “put the Council on the map.”⁴⁶ NCD member Michael Marge said of the reports: “We were very well received by both sides of the aisle as a valuable, worthwhile group. Our entree to the Congress was fantastic."⁴⁷ Despite the tremendous respect NCD gained, however, Congress took little action—a great frustration to NCD members. Although Congress pointed to Toward Independence as “the Manifesto, the Declaration of Independence for people with disabilities,” said Frieden, “nobody bothered to do anything about it."⁴⁸ NCD members and staff—especially Burgdorf, Dart, Frieden, and Parrino—were frustrated most by the lack of attention to their number-one recommendation, an equal opportunity law.

After waiting for nearly a year, they began discussing what NCD could do. They concluded that the only way to overcome legislative inertia was for NCD to take the lead. Frieden remembers talking about drafting a civil rights proposal as early as December, 1986.⁴⁹ There was some early dispute over whether disability rights legislation should come in the form of an amendment to the Civil Rights Act or whether it should be an independent initiative. At a strategy meeting, Burgdorf and Frieden solicited the input from such disability rights advocates as Marca Bristo, Evan Kemp, and Robert Funk. They discussed whether using the vehicle of a separate law might ironically reinforce discrimination by underscoring the separateness of people with disabilities. But they decided that an adequate foundation for disability rights required unique provisions and that a separate law could serve as an energizing force for the disability community.⁵⁰

The framework for such a law was already sketched out. In Toward Independence, Burgdorf specified that the law should prohibit discrimination by the Federal Government, recipients of financial assistance, federal contractors and subcontractors, employers, housing providers, places of public accommodation, persons and agencies of interstate commerce, transportation providers, insurance providers, and state and local governments. He also proposed that the law secure private right to action to remedy discrimination, give the Architectural and Transportation Barriers Compliance Board (ATBCB) the authority to remove barriers according to universal accessibility standards, and establish Protection and Advocacy Systems in each state to protect and advocate for the rights of persons with disabilities. To make nondiscrimination on the basis of handicap meaningful, he stressed, the law would have to be founded on the concept of providing reasonable accommodations and taking affirmative steps to eliminate barriers. Among the proposal’s most ambitious provisions was that all existing barriers to accessibility would have to be removed in two to five years, except where a private business or public entity received a special waiver.

Yet it was not an optimal time to introduce new civil rights legislation. The disability community, the civil rights community, and Congress were just beginning their campaign for the Civil Rights Restoration Act, which was introduced on February 19, 1987. Another civil rights measure might adversely affect its passage. Burgdorf nonetheless began putting the law on paper, expecting it could be used eventually, and finished a preliminary draft in February.⁵¹ During the spring of 1987, he and others began holding brainstorming sessions with “important and knowledgeable persons in the disability community” to include them in the process and facilitate the drafting.⁵² At the May quarterly meeting, NCD decided to move forward and give official sanction to crafting a legislative proposal, deciding that a comprehensive law, rather than a piecemeal approach, was the best way to protect disabled persons’ civil rights. Staff members Burgdorf and Frieden worked most intensively on the law. And NCD members reviewed draft after draft of the proposal prepared by Burgdorf, who advanced his own vision for the law while helping to put NCD members’ thoughts in proper legal form.

By August, 1987, Burgdorf had a complete draft of what was now called, at the suggestion of NCD member Kent Waldrep, the Americans with Disabilities Act of 1987.⁵³ Principal strategic planning for the legislative proposal was carried out by Parrino, Frieden, and Burgdorf. They concluded that success required a body of individuals and organizations to support the endeavor and good timing of its introduction so as not to obstruct the efforts of the civil rights community. At the August Council meeting, members hoped that the bill would be passed in the 100th Congress—by the end of 1988. Dart, who was in attendance at the meeting though no longer a Council member, was more cautious. He suggested it would take years to obtain passage. Nevertheless, he fully supported moving forward to initiate the requisite education process.⁵⁴

For congressional sponsorship, Parrino turned first to Senator Weicker, with whom NCD had a longstanding relationship. Weicker was one of the disability community’s greatest advocates in the Senate. This was in part because Weicker had personal experience with disability through his son, who had Down’s Syndrome. For Weicker, however, interest in disability issues stemmed from a broader philosophical and political commitment to assisting those in need. “He was a man of very strong principles about the role of government and the responsibility for caring for those who were less fortunate,” said Terry Muilenburg who worked on his staff. This applied to elderly persons and people of lower-income as well as to people with disabilities. At times Weicker acted as “the conscience of the Senate” to defend the constitutionality of an active Federal Government, Muilenburg added.⁵⁵ Weicker was a fitting congressional contact because he had played a pivotal role in ensuring that NCD stayed alive in 1983. Early in 1987, during a meeting with Parrino, he had indicated a willingness to support disability rights legislation if NCD drafted a proposal. Now Weicker officially agreed to be the bill’s sponsor: he was absolutely crucial in giving the ADA its life.

For the ADA to succeed, Senator Weicker emphasized that the bill would have to be introduced simultaneously in both houses of Congress. He recommended that NCD contact Congressman Coelho, who was, coincidentally, a close friend of NCD member Roxanne Vierra’s husband, to sponsor the House bill. Coelho also had epilepsy, and was becoming a public advocate for people with disabilities. Although Congressman Coelho’s staff cautioned him against sponsoring the bill for fear that it would not win the support of the broader disability community, Coelho agreed to sponsor it.⁵⁶ Senator Weicker later encouraged NCD to begin working closely with Senator Tom Harkin (D-IA). Harkin was Chairman of the Subcommittee on the Handicapped, which would likely have jurisdiction over the bill in the Senate.

While NCD’s solid reputation with Congress helped in finding congressional sponsors, enlisting the support of the disability community proved more difficult. Many persons in the disability community had been working toward the goals, shared by NCD, of equal opportunity and full participation; some strove for civil rights legislation akin to NCD’s proposal. But many people in the disability community viewed NCD with apprehension. While NCD collaborated with persons with disabilities throughout the country, NCD generally did not work closely with leading disability organizations, especially those that had been championing recent legislative campaigns. Moreover, given the context of the Reagan administration’s civil rights record, some questioned NCD’s motives. Some NCD members, on the other hand, suspected that others were envious of NCD for being the first to draft civil rights legislation.⁵⁷ For these and other reasons, the relationship between much of the disability community and NCD was strained.

Prior to the November Council meeting, Burgdorf met with representatives of the Consortium for Citizens with Developmental Disabilities (CCD)* to discuss the bill. At a later meeting convened by Terry Muilenburg of Senator Weicker’s staff, CCD members stated that they opposed the bill as written. Their greatest concern was that they did not want the ADA to undermine the coverage of Sections 503 and 504 of the Rehabilitation Act. Securing the Section 504 regulations had been a protracted battle, and the regulations had been subsequently assaulted by President Reagan’s Task Force on Regulatory Relief just a few years before. CCD feared that if the provisions of Section 503 and 504 were included in the ADA it would mean the regulations were back on the bloc, and an administration unfriendly to disability rights could substantially rewrite and weaken them. As an alternative, CCD proposed what became known as the “donut-hole” approach: leave what was alone, and write the ADA around it to cover everything left out.

CCD also argued that the ADA should not enforce standards inconsistent with those afforded to other minority groups. The disability community was in the midst of working with the civil rights community on the Fair Housing Amendments Act. Passage of the ADA would require the full backing of the civil rights community, so it was important to advocate the same protections. For example, while many people in the disability community believed health insurance should be a part of the ADA because people with disabilities often could not find affordable health care, health insurance was not a protection afforded to any other group. In a more general sense, CCD expressed concern about incorporating new language and new terms, such as a revised definition of disability. They urged that NCD use language from Section 504, which would help secure congressional support because it was familiar. At the November Council meeting, members voted on the draft of the ADA and rejected changes proposed by CCD. Three days later, however, Senator Weicker met with a variety of disability groups and decided, together with Senator Harkin, that Sections 503 and 504 and health insurance needed to be dropped from the ADA. Although a variety of factors warranted the exclusion of health insurance, Weicker’s representation of Connecticut, where insurance was a major industry, made the inclusion impractical.

Senator Weicker urged NCD to accede to the disability community’s changes, but NCD bristled because it was afraid to weaken its legislative proposal. Chairperson Parrino suggested getting a broader range of opinion from persons outside Washington at a meeting coinciding with the February Council meeting, on February 9, 1988. In the meantime, NCD was preparing its 1988 report, On the Threshold of Independence.† The report evaluated progress made since its 1986 report, Toward Independence, on each of the ten topics. At the suggestion of Public Affairs Specialist Andrea Farbman, NCD decided to include the current draft of the ADA in its discussion of the equal opportunity law recomme further attention to the ADA and enlist grass roots support.⁵⁸

On February 9, representatives from around the country gathered at NCD’s quarterly meeting. There they formed working groups and unanimously agreed to remove Sections 503 and 504 and health insurance from the purview of the Americans with Disabilities Act. On the following day, NCD decided to circulate the bill, with these changes, to Congress and the Reagan administration. Negotiations with the disability community continued after the February Council meeting, but Weicker, faced with a string of proposals from the disability community, decided to honor NCD’s work in drafting the legislation and forge ahead with its version of the ADA.

On April 28, 1988, Senator Weicker introduced the Americans with Disabilities Act on the floor of the United States Senate. He called the legislation “historic,” and said that it “will establish a broad-scoped prohibition of discrimination and will describe specific methods by which such discrimination is to be eliminated.” He compared the conditions faced by persons with disabilities to those faced by minorities in the 1960s. Civil rights advocates then argued forcefully and demonstratively that no person, because of race or national origin, should be discriminated against in obtaining access to public accommodations, use of transit, employment opportunities, services of state and local governments, and housing. Laws prohibited this type of discrimination by business owners, employers, and governments, Weicker said. “Yet, today,” he noted, “it is not unlawful for these same establishments to exclude, mistreat, or otherwise discriminate against people because of their disabilities.” He contended that discrimination on the basis of handicap was “just as intolerable as other types of discrimination that our civil rights laws forbid."⁵⁹ The following day, Congressman Coelho joined Weicker by introducing an identical bill to the floor of the House of Representatives. Civil rights for persons with disabilities had entered the national, legislative agenda.

NCD’s role did not end with Senator Weicker’s final acceptance and introduction of their proposal, but in a very real sense the baton was being passed from NCD to congressional sponsors and the disability community. NCD was in an awkward position. Although NCD could present legislative proposals and justify its recommendations by offering “technical information,” federal law at the time prevented NCD members and staff, as all employees of federal agencies, from personally lobbying members of Congress. In lieu of formal lobbying, NCD members made presentations in their home towns and in their professional circles. Chairperson Parrino met extensively with officials in the White House and helped pave the way for favorable action on the ADA by the Bush administration.  She also gave important congressional testimony on multiple occasions.

NCD’s presence was also carried forward as Frieden and Burgdorf resigned to take positions where they could exert more direct influence. Frieden, for example, became Executive Director of the congressional Task Force on the Rights and Empowerment of Persons with Disabilities, which played an important role in documenting the need for the ADA. Some members felt slighted by the transition in ADA leadership. But it was actually a testament to their success—NCD had accomplished its mission. No other single disability organization could have introduced a proposal to Congress with the same authority NCD possessed as an independent federal agency. NCD had performed the crucial function of documenting a problem, crafting a solution, and securing a foothold in Congress. It brought people to the table to develop a workable solution with substantial consensus. Now NCD would join the ranks of other organizations and thousands of individuals in educating America about the ADA.

*The Consortium for Citizens with Developmental Disabilities (CCDD) changed its name to the Consortium for Citizens with Disabilities (CCD) in 1989. Since this name change took place midway through the ADA deliberations, and to avoid confusion, CCD will be used consistently throughout this work when identified in relation to the ADA.

† NCD members at the time were: Sandra Swift Parrino, Chairperson; John S. Erthein, Theresa L. Gardner, Marian N. Koonce, Leslie Lenkowsky, Nanette Fabray MacDougall, Robert Muller, Brenda Premo, Harry J. Sutcliffe, Joni Eareckson Tada, Roxanne Vierra, A. Kent Waldrep, and Phyllis Zlotnick. NCD staff were: Lex Frieden, Executive Director, Brenda Bratton, Stacey Brown, Ethel Briggs, Robert Burgdorf, Frances Curtis, Andrea Farbman, Kathleen Roy, and Deborah Shuck. National Council on the Handicapped Fellows were: LaVerne Chase and D. Ray Fuller.

46. Quoted in NCD Minutes, July 30–August 1, 1988, p. 3.

47. Marge, interview.

48. Frieden, interview, December 27, 1996.

49. Frieden, interview, December 28, 1996.

50. Marca Bristo, telephone conversation with author, May 28, 1997.

51. Burgdorf, interview.

52. NCD Minutes, May 18–20, 1987, p. 21.

53. Burgdorf, interview.

54. NCD Minutes, August 3–5, 1988, p. 12.

55. Terry Muilenburg, interview, December 11, 1996.

56. Tony Coelho, interview, November 22, 1997.

57. Burgdorf, interview.

58. Ibid.

59. Senator Lowell Weicker, statement, Cong. Rec., vol. 134 (April 28, 1988), p. S5107, S5109–10.