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

LAYING THE FOUNDATION:
DISABILITY POLICY & ACTIVISM, 1968–1988

The Americans with Disabilities Act (ADA) of 1990 raced through Congress.  So much momentum drove the bill forward that many members of Congress, caught by surprise, reacted by claiming the bill had come from nowhere, that there was little precedent for such sweeping legislation, and that the deliberative process should be extended to provide time to grasp the novelty of the bill’s provisions. Such claims, however, overlooked one crucial fact: the ADA had been long in gestation. Indeed, part of the reason the bill became law with such alacrity is precisely the degree to which the legislation was built on a solid foundation: of policy, legal principle, personal networks, coalition-forming, and an increasingly active disability community. Without this foundation, which was put in place largely over the 1970s and 1980s, the ADA’s passage would have been impossible. To comprehend the ADA one must first understand the context in which it developed.

Contours of Disability in America

Disability has a history. In colonial America, persons with disabilities were often viewed as part of the “deserving poor.” They were consequently accepted by local communities, where they contributed however possible and shared in the community’s offerings. But with the nineteenth-century industrial and market revolutions and the growth of a liberal individualistic culture, the cohesion of physical and geographic communities began to break down.¹ One consequence was that persons with disabilities, increasingly deemed unable to compete in America’s industrial economy, were spurned by society. Growing side-by-side with social structures catering to individual achievement were custodial institutions for those who did not “fit” with the American creed: persons with sensory impairments, reduced cognitive capacities, physical impairments, mental illnesses, or other conditions. Institutions supposedly “protected” these persons from public harm.² Institutions also allegedly protected society from those who were feared by many as dangerous and a threat to the gene pool. Some persons with physical disabilities were displayed as “freaks” of nature, to be marveled at like exotic animals.³ Such literary works as Herman Melville’s Moby Dick reinforced stereotypes of persons with disabilities as sinister, or even crazy, through such characters as the peg-legged Captain Ahab.⁴

Racism, ethnic imperialism, and xenophobia plagued early twentieth-century America. Darwin’s theories about the origin of species gave rise to universal theories about natural selection within humankind and the evolution of society.⁵ Many believed it was in the best interest of humanity to eliminate or at least curtail populations considered inferior, as witnessed in the treatment of African Americans and Jews. These ideas also adversely affected persons with disabilities, displayed most starkly in the 1927 Supreme Court case Buck v. Bell. 

Carrie Buck argued before the Court that state-imposed sterilization, based on disability, was unconstitutional. The Court disagreed. Instead, the Court sided with “experts” who alleged that persons with disabilities, namely those collectively classified as “the feeble-minded,” were “a menace” to society, threatened society’s “best citizens,” and tended to “sap the strength of the state.” Justice Oliver Wendell Holmes thought it best for society to seek to avoid “being swamped with incompetence.” He thus ruled that it was “better for all the world, if, instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind."⁶ Although sterilization and segregation practices targeted those classified as “feeble-minded” persons—or people with mental retardation, mental illness, and epilepsy—it reflected a general intolerance for those who allegedly did not fit the model for the rugged, individualistic, capitalistic American.

Significant developments over the course of the twentieth century, however, transformed the nature of disability in American life. These included demographic changes among persons and parents of persons with disabilities, the creation of disability organizations, and the growth of rehabilitation as a profession. In the early twentieth century, the demographics of disability changed as thousands of Americans acquired disabilities through industrial, work-place injuries. Moreover, World War I introduced thousands of veterans with disabilities, as did World War II, the Korean War, and the Vietnam War. In addition to the increased numbers of disabilities caused by injuries, Americans also began to live longer. Whereas in 1900 the average life span was 47 years, by 1980 life expectancy had increased to the age of 74. Since disability tends to increase with age, an older population meant an America with greater prevalence of disability.⁷ By 1980 at least thirty million Americans experienced disability first-hand. As all Americans, these persons wanted the best life possible and worked to get it. Increasing numbers of persons with disabilities made disability a societal challenge rather than a scattered, personal predicament.

As demographics changed, persons with disabilities began forming organizations to act as advocates for their interests. Early examples include the Disabled Veterans of America (DVA) and the National Mental Health Association (NMHA), both founded in 1920, and the National Federation of the Blind (NFB), founded in 1940. After World War II, this growth accelerated. The Paralyzed Veterans of America (PVA) opened its doors in 1946, the United Cerebral Palsy Associations (UCPA) began in 1949, the National Association for Retarded Citizens (ARC) was founded in 1950, the first Home Office of the National Association of the Deaf (NAD, originally founded in 1880) opened in 1953, and the American Council of the Blind (ACB) started its operations in 1961. These organizations dedicated their existence to improving the lives of their constituencies and gave persons with disabilities a stronger voice. They raised money, identified areas of need, and lobbied to pass legislation that would help solve problems. They looked for ways to achieve employment and to gain better education. By working with Congress and the judiciary to achieve their goals, they also gained valuable legal experience. As a result of these activities, they further imprinted disability on the American landscape.

Throughout the twentieth century a variety of professions developed to attend to the challenges posed by disability. By giving increased attention to persons with disabilities, physicians, researchers, nurses, physical and occupational therapists, and vocational rehabilitation counselors, and other professionals enabled many persons with disabilities to live healthier lives. New technologies, drugs, and devices enabled persons to live longer with lower incidence of secondary disabilities, and with greater control over their daily activities. It also helped transform disability rehabilitation into a full-fledged industry, which had the concomitant affect of making rehabilitation a commodity to be bought and sold in the marketplace.⁸ Moreover, professionals tended to focus their attention on specific disabilities, fostering the compartmentalization and fragmentation of people with disabilities.

As the numbers of persons with disabilities grew, and as they, their parents, organizations, and professionals worked to improve their lives, the attitudes manifest in Buck v. Bell came under attack: persons with disabilities, too, deserved to be part of society. National policy developments assisted in this transition. Over the course of the twentieth century, the scope and power of the Federal Government expanded to meet the growing demands of an industrializing nation. New legislative endeavors accordingly addressed disability issues. Reforms directed at corporate America provided benefits to persons injured on the job. By 1941, forty-five states ensured compensation for work-place injuries. The United States Public Health Service (USPHS), established in 1902, gave new attention to the importance of health care for society. The Veterans’ Rehabilitation Act of 1918 established a program for training veterans with disabilities. In 1920, the combined problems posed by industrial impairments and war veterans led to the Smith-Fess Act, which established the vocational rehabilitation program. By 1935, every state had a vocational program in operation, providing vocational training, job placement assistance, and counseling to those with physical disabilities. During World War II, Congress expanded the vocational rehabilitation program to offer “medical, surgical, and other physical restorative services” and to include services for the mentally ill and mentally retarded.⁹ Legislatures passed other laws directed toward greater access for persons with disabilities: for example, laws permitting the public use of guide dogs and white canes for blind persons.

The Social Security system also had a profound effect on persons with disabilities. In the 1950s, Congress amended the Social Security Act to provide income benefits to working-age people with disabilities who could not engage in any “substantial gainful activity.” In 1965, Congress established the Medicare and Medicaid programs that provided health care coverage to select groups of people with disabilities, as well as to elderly and lower income persons. Persons with disabilities could also be eligible for food stamps, school lunches, and housing subsidies if they met income tests. Although these programs demonstrated a recognition of disability as a matter of national concern, they would later prove to be a mixed blessing. While they provided much-needed income security, they could make paid employment less appealing.

Despite many improvements, problems for persons with disabilities were widespread: unemployment, lack of education, low income, and isolation. Moreover, most Americans still understood disability primarily as a problem that resided in the individual. They viewed disability as a “medical” problem that required medical supervision. People were to be “rehabilitated” to become “normal.” The public policy approach to disability, however, would be revolutionized in the wake of the 1960s.

1. Robert H. Wiebe, The Search for Order, 1877–1920 (New York: Hill and Wang, 1967).

2. David J. Rothman, Discovery of the Asylum: Social Order and Disorder in the New Republic (Boston: Little, Brown, 1971).

3. Rosemarie Garland Thomson, ed., Freakery: Cultural Spectacles of the Extraordinary Body (New York: New York University Press, 1996.)

4. Joseph Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993), pp. 30–31

5. Carl N. Degler, In Search of Human Nature: The Decline and Revival of Darwinism in American Social Thought (New York: Oxford University Press, 1991).

6. Quoted in Timothy M. Cook, “The Americans with Disabilities Act: The Move to Integration,” Temple Law Review 64:2 (Summer 1991), p. 399.

7. Gerben DeJong and Raymond Lifchez, “Physical Disability and Public Policy,” Scientific American 248:6 (June 1983), p. 43.

8. Gary L. Albrecht, The Disability Business: Rehabilitation in America (Newbury Park, California: Sage Publications, Inc., 1992).

9. Senate Committee on Labor and Public Welfare, Rehabilitation Act of 1973: Report, 93rd Cong., 1st sess., July 16, 1973, Report No. 93-391, reprinted in 1973 USCCAN, pp. 2082–83.

The Twin Pillars

Advocates of the ADA regularly declared that it was the most sweeping civil rights legislation in a quarter century: that is, since the Civil Rights Act of 1964—one of the most important twentieth-century domestic initiatives. The aims of the Civil Rights Act were not achieved overnight. But the legislation heralded a revolutionary proposition: it is against the law to discriminate on the basis of race, color, national origin, or religion. The Civil Rights Act was born of a protest movement. In the decade following the historic 1954 Supreme Court ruling, Brown v. Board of Education, African Americans, students, and white supporters participated in nationwide sit-ins to protest segregated eating establishments; bus boycotts to protest segregated bus seating; freedom rides to protest segregation in bus stations; voting registration drives; and numerous demonstration marches supporting, among other things, the enrollment of African Americans in white educational institutions. This movement faced vehement and violent opposition from whites viscerally committed to centuries of white supremacy—first in slavery and then in segregation and disfranchisement. But television coverage of dogs and fire hoses unleashed on peaceful marchers thrust the injustice of rampant racism and racial subordination into the living rooms of Americans throughout the country. Confronted by the flagrant violation of American principles of liberty and equality, American public opinion shifted to support the aspirations of America’s blacks.¹⁰

President John F. Kennedy and, after Kennedy’s 1963 assassination, President Lyndon B. Johnson, sought to quell the social unrest by submitting to Congress comprehensive civil rights legislation that would protect the rights that millions earnestly pursued. But it was a battle. A protracted and vigorous debate ensued; compromises were made. When the legislation finally reached the House floor, one Representative introduced an amendment that would include women in the coverage of the act by adding sex as a prohibitive category for employment discrimination. His intent, however, was to kill the bill by suggesting what to many was a laughable proposition: equality for women. The amendment was approved, but it did not kill the bill. The resulting Civil Rights Act of 1964, signed into law by Johnson on July 2, 1964, provided numerous protections to racial and ethnic minorities and persons of varied religious faiths.* The heart of the law was the principle that all persons, regardless of “race, color, religion, or national origin,” are entitled to the “full and equal enjoyment of the goods, services, privileges, advantages, and accommodations of any place of public accommodation."¹¹ This was in accordance with one of the central demands of the civil rights movement—equal access. Political realities, however, restricted that access to places of lodging, eating, and entertainment, and exempted private clubs and religious organizations. Additional provisions of the Civil Rights Act included the desegregation of public facilities and public education. Other provisions stipulated nondiscrimination in federally-assisted programs and employment practices. More legislation followed close behind. The Voting Rights Act of 1965 granted the Federal Government the power to ensure that racial minorities could register to vote. In 1968 the Fair Housing Act expanded the scope of the Civil Rights Act by adding Title VIII, which prohibited discrimination in the sale or rental of housing.

All of these measures had varying degrees of success. Nondiscrimination in public accommodations resulted in the most change. Retail businesses welcomed this provision because it translated into more customers and more money. In addition, it eliminated the cost of dual facilities. Gains in education and employment nondiscrimination would come more slowly. The civil rights movement, however, left a crucial legacy to African Americans and other disadvantaged groups, including persons with disabilities. They would seek the same protections and model the protest movement. First, the Civil rights movement legitimated and proved the success of civil protest to demand civil rights. Persons with disabilities, as other groups, would use the same sit-in and marching tactics. Second, the civil rights movement established a vital principle: discrimination according to characteristics irrelevant to job performance and the denial of access to public accommodations and public services was, simply, against the law. Once codified, logical implications extended well beyond race. Finally, the civil rights movement left a body of statutes and case law—models for future legislation. There would be no ADA were it not for the successful protests of African Americans, for their crowning achievement in the Civil Rights Act was also the philosophical foundation of the ADA.

The civil rights movement did not, however, have an immediate, direct impact on the disability community. The Civil Rights Act made no reference to persons with disabilities. The only significant statute increasing access for persons with disabilities, and passed near that time, was the Architectural Barriers Act of 1968. This act was largely the result of the efforts of Hugh Gregory Gallagher. As a legislative assistant, Gallagher had been instrumental in making the Library of Congress and other buildings in Washington accessible. These efforts culminated with his drafting of the Architectural Barriers Act, which required that all buildings constructed, altered, or financed by the Federal Government had to be physically accessible.¹¹

The first attempts to merge disability with the civil rights movement were unsuccessful. In 1972, for example, Senator Hubert H. Humphrey, Jr. (D-MN) proposed an amendment to the Civil Rights Act that would incorporate disability as a protected class. But the proposal made little headway. There was no constituent base to support such an endeavor. Moreover, advocates of the Civil Rights Act feared that the addition of “disability” as a “protected class,” similar to ethnic minorities, might dilute the Civil Rights Act. And, once the act was on the table for discussion, members might introduce damaging amendments.

The political climate of the late 1960s and early 1970s worked against the advancement of civil rights for persons with disabilities. In 1968, Richard M. Nixon campaigned for the presidency with pledges to stem the tide of civil rights advances. He won the election in part due to a cultural backlash against the civil rights movement and President Johnson’s War on Poverty. Nixon’s election reflected a breakdown of the New Deal consensus, the splintering of the Democratic party, and the dawn of a conservative shift in American public opinion. In the early 1970s, the nation also faced new economic pressures and financial restraint. Many thought welfare measures now -exceeded the American budget. It was simply not a friendly time for new civil rights protections.

Ironically, however, a crucial component of the infrastructure of disability law came precisely at this time. The legal foundation of the Civil Rights Act of 1964 alone could not adequately buttress as comprehensive a measure as the ADA. Although ethnic minorities and women had been afforded civil rights protections identical to those for African Americans for identical civil rights protections, disabled people as a class were different and required such unique legal provisions as “reasonable accommodation.” This part of the ADA’s foundation came from Section 504 of the Rehabilitation Act of 1973, a stealth measure in the midst of a backlash against civil rights.

This occurred in spite of President Nixon because Congress continued to promote social legislation. When the Vocational Rehabilitation Act came up for reauthorization, Congress crafted an even broader piece of legislation called the Rehabilitation Act of 1972. Congress sought to expand the program beyond its traditional employment focus by identifying ways to improve the overall lives of persons with disabilities: “the final goal of all rehabilitation services was to improve in every possible respect the lives as well as livelihood of individuals served."¹³ The new law would extend rehabilitation services to all persons with disabilities, give priority to those with severe disabilities, provide for extensive research and training for rehabilitation services, and coordinate federal disability programs. The act would be carried out by a Rehabilitation Services Administration (RSA) housed in the Department of Health, Education and Welfare (HEW). Passage of this legislation, however, resulted in a vigorous battle. Nixon vetoed the bill on two occasions. He claimed that the bill was “fiscally irresponsible” and represented a “Congressional spending spree.” He urged: “We should not dilute the resources of [the Vocational Rehabilitation] program by turning it toward welfare or medical goals."¹⁴ After failing to override the president’s veto by six votes, the Senate was forced to negotiate with the Nixon administration.

The compromise legislation signed into public law on September 26, 1973, made for a weaker RSA tightly controlled by the Secretary of HEW. It reduced appropriations levels, abolished programs designed to help address certain categories of disability, substituted “emphasis” for “priority” in dealing with persons with severe disabilities, and eliminated a proposed Division of Research, Training and Evaluation. Nevertheless, the Rehabilitation Act fell short of original congressional intent, it was the first legislation designed to improve the overall lives of persons with disabilities. Especially significant was Title V of the act. Section 501 directed federal agencies to develop affirmative action programs for the hiring, placement, and advancement of persons with disabilities. Section 502 established the Architectural and Transportation Barriers Compliance Board (ATBCB), which would ensure compliance with the Architectural Barriers Act of 1968, pursue ways to eliminate transportation barriers, and seek ways to make housing accessible. Under Section 503, parties contracting with the United States were required to use affirmative action to employ qualified persons with disabilities. Finally, and most importantly, Section 504 stated: “No otherwise qualified handicapped individual in the United States . . . shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."¹⁵

This phrase was modeled after Title VI of the Civil Rights Act of 1964 and Title IX of the Education Amendments Act of 1972, which prohibited discrimination in federally-assisted programs on account of race, color, religion, national origin, or sex. Unlike the Civil Rights Act of 1964, Section 504 did not emerge in response to protest. Rather, it was created silently by a group of congressional staff members. No suggestion for such a provision was made at the hearings, and the provision was not in the original draft of the bill. Staff added the section late in the deliberative process without any statement of congressional intent or appropriations to finance it. Not a single member of Congress mentioned the section during floor debate, and President Nixon made no reference to it as grounds for his veto. The section apparently developed out of a fear that persons receiving vocational rehabilitation would later be blocked from employment, thus negating the rehabilitative benefits. It was a way to add an element of civil rights language without the danger of amending the Civil Rights Act.¹⁶

Although Section 504 was not introduced at the behest of disability advocates, the Rehabilitation Act helped energize the disability community. Persons with disabilities protested each of President Nixon’s vetoes. And, though it appears that many in the disability community were only vaguely familiar with Section 504 as late as 1975, conflict over the regulations for Section 504 culminated with unprecedented demonstrations by the disability community in the spring of 1977.¹⁷

Three consecutive administrations delayed action in issuing regulations for Section 504. Part of the problem was that Section 504 did not expressly mandate regulations. Accordingly, for the year culminating with President Nixon’s resignation on August 9, 1974, the Nixon administration failed to take any action toward developing Section 504 regulations. President Gerald Ford, however, supported the promulgation of Section 504 regulations and assigned HEW with the responsibility to issue them. HEW’s Office for Civil Rights (OCR) was appointed to write the regulations. This was significant because such regulatory agencies as RSA, a potential alternative for writing the Section 504 regulations, focused mostly on community education and voluntary compliance among recipients of federal assistance. OCR, however, based its regulations on its history in dealing with civil rights and segregation, where firm legal foundations rather than mere voluntary compliance was necessary.

Under the leadership of John Wodatch, OCR prepared regulations that offered a new definition of disability, issued mandates for educating persons with disabilities in public schools, and demanded accessible buildings and transportation. But shortly after presenting the regulations to HEW Secretary Casper Weinberger on July 23, 1975, Weinberger was replaced by David Mathews, who was reputed to be “a cautious and indecisive man who tended to be more philosophical than pragmatic in running the department."¹⁸ Mathews did not oppose the regulations outright. But by demanding further analysis of the regulations, rather than taking the usual step of publishing the regulations as a proposal, Mathews delayed action. He even sent the regulations outside of HEW for review by a private firm. On March 11, 1976, OCR resubmitted the regulations with revisions, but two months passed before Mathews presented the regulations to the public.

The failure of HEW to issue regulations for Section 504 began to attract attention. By the fall of 1974, for example, Jim Cherry, a young attorney and disability lobbyist who had a rare, degenerative muscular disease, began writing letters to HEW requesting that the department issue regulations. But nothing came of these efforts. Ultimately, Cherry turned to the legal system and found a firm, Georgetown’s Institute for Public Interest Representation (INSPIRE), to support his cause pro bono. After a year of presenting formal petitions demanding that HEW issue regulations, INSPIRE finally filed a case against HEW on February 13, 1976—Cherry v. Mathews. Later that spring, a group of people with disabilities demonstrated in Secretary Mathews’s office. The delay also began to catch the attention of Congress, which held oversight hearings on May 5 to determine why no action had been taken.

Mathews finally presented the regulations to the public on May 17, 1976, but he issued them only as an intent to propose regulations, not an actual proposal. Mathews did not issue a Notice of Proposed Rule Making, the standard procedure for soliciting public feedback on proposed regulations, until July 16. Three days later, on July 19, the district court of Washington, D.C., ruled on the Cherry v. Mathews case and ordered Mathews to promulgate regulations. In the next six months, HEW solicited public comment. OCR made minor changes to the regulations and presented the revised regulations to Mathews on January 10, 1977. Over three years had now passed since the Rehabilitation Act became public law. But Mathews still stalled. On January 18, instead of signing the regulations, he sent them to the Senate Committee on Labor and Public Welfare for review—an unprecedented action in regulation writing. That same day, the district court ordered Secretary Mathews to cease the delay. But, two days later, Jimmy Carter was inaugurated as president and Mathews left office.

During his campaign, Carter had promised to make people with disabilities “active partners in our attempts to achieve . . . full civil rights” and made a commitment to signing the regulations.¹⁹ As president, he nominated Joseph Califano to be Secretary of HEW. Califano allegedly supported the concept of Section 504, but he too postponed action on the regulations; he wanted to review them before attaching his name. Califano worried especially about the costs associated with the statute and resisted the inclusion of drug and alcohol abusers as a protected class. When he proposed implementing a more limited concept of making individual programs accessible rather than demanding broad, structural changes, however, his actions drew the ire of persons with disabilities.

*Protections based on sex applied only to the employment title. Racial and ethnic minorities and persons of various religious faiths were protected by every title.

10. Harvard Sitkoff, The Struggle for Black Equality, 1954–1992 (New York: Hill and Wang, 1993); Clayborne Carson, In Struggle: SNCC and the Black Awakening of the 1960s (Cambridge, Mass: Harvard University Press, 1995).

11. The Civil Rights Act of 1964, Public Law 88-352, 88th Cong., 2nd sess., H.R. 7152, July 2, 1964, § 201(a).

12. Skip Kaltenheuser, “Hugh Gallagher: ADA’s Hidden Architect,” New Mobility (July-August 1995), p. 41.

13. Rehabilitation Act of 1973: Report, pp. 2077–78.

14. Richard Nixon to the Senate of the United States, March 27, 1973, printed in ibid., pp. 2088–90.

15. Rehabilitation Act of 1973, Public Law 93-112, 93rd Cong., 1st sess., September 26, 1973, § 504.

16. Richard K. Scotch, From Goodwill to Civil Rights: Transforming Federal Disability Policy (Philadelphia: Temple University Press, 1984), pp. 49–57.

17. Ibid., p. 84.

18. Ibid., p. 87.

19. Quoted in Jack Anderson and Les Whitten, “Handicapped Plan 10-City Sit-In,” The Washington Post, March 26, 1977, p. E37.

Disability Protest

Opposition to the delay in signing regulations developed from growing collaboration among people with disabilities. In the early 1970s, the primary gathering place for people with disabilities was the annual spring conference of the President’s Committee on Employment of the Handicapped (PCEH). President Harry S. Truman had founded PCEH in 1947 to assist physically disabled veterans in finding employment. In the 1960s, PCEH expanded its mission to include persons with mental retardation and mental illness. In addition to drawing attention to employment for people with disabilities, which naturally led to a broader interest in other disability issues, PCEH became the first central meeting ground where disability advocates, disability professionals, and public officials could share ideas and set agendas for the future.²⁰

At the 1973 PCEH meeting, following Nixon’s second veto of the Rehabilitation Act and the accompanying disability protest, a group of disability activists discussed the need for an organized, collective disability voice that would unite the disparate disability-specific organizations.²¹ Only then, they thought, could they exert effective influence on the Federal Government. The coalition would not disband other disability organizations: they would become its members. In 1974, Fred Fay, Roger Peterson, Dianne Latin, Al Pimentel, Judy Heumann, Fred Schreiber, and others set up a committee to write the constitution and bylaws for such an organization. They named it the American Coalition of Citizens with Disabilities (ACCD): it was the first major cross-disability organization. The purpose of ACCD was to enhance communication among people with disabilities, promote the rights of disabled persons, educate people about their rights, and foster collective political action.

In April, 1975, again at the annual PCEH meeting, representatives from a spectrum of disability organizations approved the ACCD constitution and bylaws and established a governing board. They elected Eunice Fiorito, a blind woman who had become the first director of the New York City Mayor’s Office for the Handicapped (the first of its kind) in 1972, to be president. Fiorito was an aggressive and effective disability rights advocate and crucial to ACCD’s early development. “If it wasn’t for Eunice,” said Rubenfeld, who was one of the successors as ACCD President, “I don’t think there’d be an ACCD."²² Schreiber, Heumann, and Fay joined Fiorito as vice president, secretary, and treasurer. In 1976, Frank Bowe, a recent Ph.D. graduate, became the first Executive Director. Scores of disability organizations scurried to join ACCD. Some, such as the Houston Coalition for Barrier Free Living, were established in order to be a part of ACCD.

The fast-growing power and reputation of ACCD positioned it take the lead in coordinating advocacy regarding the Section 504 regulations. ACCD threatened to demonstrate at the 1976 Republican convention with black coffins, symbols of the plight of people with disabilities, if the Ford administration did not act. Representatives of ACCD worked with Democrats to have Carter issue statements that he would ensure the signing of the regulations if elected. On the first day of the Carter administration in January, 1977, ACCD sent a telegram to HEW reminding the agency of the 504 regulations and, the next day, showed up at the HEW office to demand signing within 30 days. In addition, ACCD Executive Director Frank Bowe, who worked full time in ACCD’s Washington office, organized the production of “Sign 504” buttons to heighten public awareness about the regulatory stalemate.

After it became evident that a signature from Secretary Califano was not forthcoming, ACCD began considering ways to exert additional pressure. Members decided to be dramatic and attract press coverage. “When you put the pressure on, you embarrass politicians,” said Rubenfeld.²³ Accordingly, in February, ACCD decided to stage sit-ins at Regional Offices of HEW. On March 18, ACCD wrote a letter to President Carter asserting that disability advocates would resort to political action if the regulations were not signed by April 4. “The disabled are furious over what they see as a retreat by President Carter on his promises” to help people with disabilities, reported The Washington Post in an editorial publicizing the planned sitin.²⁴ Still, no action came. On Monday, April 4, at 1:30 p.m., Frank Bowe, Dan Yohalem, Deborah Kaplan, and others met with Secretary Califano in his office. Califano tried to explain the delay and expressed support of public demonstrations to urge signing of the regulations. The disability activists, however, stated their demand for immediate signing of the unchanged regulations and then walked and rolled out of the office. Television cameras captured the events on film.²⁵ The following morning, on April 5, hundreds of disability activists gathered at the Capitol building, where they publicly declared their demand for immediate signing of the regulations. Later in the afternoon, they marched several blocks from the Capitol to the HEW building. Simultaneously, activists staged demonstrations at regional offices in Atlanta, Boston, Chicago, Dallas, Denver, Philadelphia, New York, San Francisco, and Seattle.

In Washington, the HEW demonstration had two components. Most of the activists who marched from the Capitol remained outside the HEW building to make sure the protest stayed in the eye of the media. A second group of about fifty activists, however, stealthily entered the building in small groups and then gathered in the waiting room outside Califano’s office. They tried to storm Califano’s personal office, but dozens of guards blocked their way. Consequently, they decided to stay in the waiting room until they met the secretary personally. The guards permitted them to stay, but they imposed tight restrictions. When the protesters tried to order food around 5:00 p.m., the guards ripped the phones from the wall. Security also shadowed activists to the restrooms to prevent use of public phones. Guards even prohibited Schreiber, who was the president of NAD, from contacting his wife or leaving the floor to get his heart medication. Eventually, however, the guards recognized the severity of the situation and enabled Schreiber to receive his medication. The protesters went without food and stayed over night—sleeping on couches, desks, and the floor. On Wednesday, April 6, Secretary Califano met with the protesters and asked them to leave. But he would not commit to signing the regulations immediately. The demonstrators discussed staying and being forcibly arrested, but voted to end the protest that afternoon instead.

The longest demonstration was in San Francisco, where the group refused to leave the HEW building until the regulations were signed.²⁶ As in Washington, HEW officials initially tried to squelch the protest by starving the demonstrators and cutting off telephone communications. Persons whose conditions required personal attendants, medication, and medical devices such as catheters were thus putting their health and lives at risk. The clamp-down, however, served to motivate and unite the demonstrators rather than discourage and disband them. Moreover, largely due to the intervention of Governor Jerry Brown, protesters were ultimately allowed to stay in the building and receive outside assistance. Within days, the number of people dwelling inside the building grew to well over 100.

The surrounding community, which cherished its tradition of protest, aided the protesters. Area grocers and restaurants donated food. The local Black Panthers prepared and delivered an Easter dinner. And community religious leaders assisted in celebrating Easter and Passover. Congressman Phillip Burton helped win the installation of pay phones. This helped demonstrators maintain their lines of communication with the outside world, which they sustained as well through banners, sign language, and a set of walkie-talkies smuggled in by a local gay activist group, the Butterfly Brigade. On the inside, demonstrators were cultivating “a mini-Woodstock,” as one journalist described it. Rubenfeld called it “a love-fest."²⁷ Living in open quarters stimulated close friendships. People with diverse disabilities came to know and understand each other better, which helped cultivate a united vision for their common betterment. The persistence of the demonstrators was a powerful testimony to their determination to achieve their civil rights. And their actions left Secretary Califano little choice but to sign the regulations without change, which he finally did, on April 28.²⁸ Two days later, the disability activists ended their occupation of the HEW building.

The Rehabilitation Act of 1973, Section 504, and the 504 regulations were significant for a number of reasons. First, Section 504 eventually helped change the way people thought about disability. As one disability historian explained: “The words we use to define problems, or to evaluate potential solutions to those problems, structure thinking by linking concrete situations to moral categories. Section 504 transformed federal disability policy by conceptualizing access for people with disabilities as a civil right rather than as a welfare benefit."²⁹ This was a decisive and important shift. Disability had long been viewed as a condition meriting government assistance, but this elevated disability to the realm of civil rights and gave persons with disabilities access to a new legal vehicle for asserting their place in American society. The regulations affirmed this point: Section 504 “represents the first federal civil rights law protecting the rights of handicapped persons and reflects a national commitment to end discrimination on the basis of handicap."³⁰

Second, the battle over Section 504 regulations gave voice to the disability rights movement. The disability community’s minor role in bringing about the original Section 504 legislation is less important than the protests that the regulations spurred. Secretary Califano would have had to sign the regulations eventually. But the protests made it extremely difficult for the secretary to incorporate any changes that might have weakened the regulations. And they left a lasting image of persons with wheelchairs taking over federal buildings—a practice which became a model for future demonstrations.

Third, the Section 504 regulations established legal standards for nondiscrimination tailored to the civil rights needs of persons with disabilities, which would later be replicated in the ADA. The regulations determined that ending discrimination for persons with disabilities meant taking proactive steps to remove barriers and make reasonable accommodations. Additionally, the regulations balanced this need against a limit of “undue hardship” for the federal agencies and contractors covered by the regulations.

The Civil Rights Act of 1964 and the Rehabilitation Act of 1973 would be the principal legal foundation for the ADA: the twin pillars. There could be no ADA without them. It was not enough, however, only to have a legislative foundation. Passing legislation is a complicated process; it is not merely an inevitable and logical development of legal principle. Legislation develops in political, social, intellectual, and cultural contexts. Successful laws are as much about the people that shape them as they are about legislative language. Thus, even with the legal framework of the Civil Rights Act of 1964 and the Rehabilitation Act of 1973 well-established by 1980, the ADA could not have succeeded at that time. The social, political, and cultural contexts necessary to support such legislation were simply not yet in place. While the 1977 protests were the crowning achievement of ACCD and a major rite of passage for the disability rights movement, the movement was still in its infancy. Yet, over the ensuing decade, the disability rights movement bloomed. The disability community attained a new sophistication in legal expertise, developed a political presence in the White House and on Capitol Hill, and established credibility with the broader civil rights community.

20. Nora Groce, The U.S. Role in International Disability Activities: A History and a Look Towards the Future (Washington, D.C.: U.S. Department of Education, 1992), pp. 32–33.

21. The following account of ACCD is based on: Eunice Fiorito, interview, May 30, 1997; Phyllis Rubenfeld, interview, May 23, 1997; and Frieden, telephone conversation with author, May 18, 1997.

22. Rubenfeld, interview.

23. Ibid.

24. Anderson and Whitten, “Handicapped Plan 10-City Sit-In,” p. E37.

25. Scotch, From Goodwill to Civil Rights, p. 111.

26. The following account of the San Francisco protest relies heavily on Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993), pp. 66–69.

27. Rubenfeld, interview.

28. Scotch, From Goodwill to Civil Rights, pp. 87–115.

29. Ibid., p. 156.

30. Federal Register 42:86 (May 4, 1977), p. 22676.

Growth of the Disability Rights Movement

As Congress and HEW in Washington were writing civil rights language into federal laws and regulations, important work within the disability community was taking place throughout the nation. A disability rights movement was being born. It was not the first time people had advocated for the rights of persons with disabilities, but the movement that formed in the 1970s was uniquely consumer-driven. Not all constituencies of the disability community supported the effort to view disability as a civil rights issue with the same vigor. Indeed, great obstacles had to be overcome to establish a meaningful disability rights movement.

Although the disability rights movement developed in the tradition of the 1960s social movements, a number of factors made the rise of this movement much more difficult. “Disability” as a class did not share the same cohesive forces manifest with race and gender. In the 1950s and 1960s, persons who were blind, paralyzed, or mentally ill did not naturally share a common identity. In fact, persons with different disabilities were often in conflict over limited government resources. Moreover, disability transcended and intersected such categories as race, gender, and class that often provided a basis for affinity and identity. Persons with disabilities generally did not inhabit the same physical communities that helped fuel the civil rights movement. And segregation for persons with disability meant not only separation from mainstream society, but also isolation from each other.

The disability rights movement began to take shape during the 1970s in spite of these obstacles. It is difficult, however, to explain its origins neatly, for it derived from multiple sources. While the movement drew on various cultural currents to achieve its ends, it grew primarily out of personal experiences with disabilities and the recognition that current quality of life was inadequate. Even though most persons within the disability community shared similar goals—such as education, jobs, dignity, access, and equal participation—the wide variety of disabilities meant that subgroups of the disability community did not always seek the same objectives. The activities of one group were not only often unknown to others, at times they ran counter to the efforts of others.

One key source of the disability rights movement was the independent living movement. Early threads of the movement can be seen as early as the 1950s, when people such as Mary Switzer and Gini Laurie began to realize that disability services could be cheaper and more effective when provided through personal attendant care at home rather than in institutions. In the 1960s, the independent living movement gained momentum predominantly through the influence of college students. In 1962, for example, four students with disabilities at the University of Illinois at Champaign-Urbana helped start the movement by leaving an isolated facility to reside near campus in a home modified for accessibility. They then began working with the University to improve campus accessibility and gain increased control over their own lives.

A similar and more visible effort took place the same year, when Ed Roberts, who was paralyzed from polio, entered the University of California at Berkeley.³¹ The school housed him in the third floor of Cowell Hospital, where he was aided by friends and attendants with eating and dressing. Roberts thrived. He earned not only his undergraduate degree, but also a masters degree in political science. News of his success spread, and by 1967 twelve students with major disabilities joined him in Cowell. These students, who called themselves the “Rolling Quads,” began holding brainstorming sessions about ways they could increase their self-sufficiency. Rather than be directed by, and dependent on, bureaucrats, they wanted to be able to secure their own funding, find their own jobs, and make their own decisions.

To promote this they secured a grant from HEW, in 1970, to finance a Physically Disabled Students’ Program (PDSP). The goal of the program was independent living. The ramped office provided access to residential counselors, tips on where and how to obtain personal attendants, and a wheelchair repair shop. To meet the growing requests for service from nonstudents, PDSP leaders joined to incorporate the Berkeley Center for Independent Living in 1972. As one journalist observed: “It would be run by people with disabilities; approach their problems as social issues; work with a broad range of disabilities; and make integration into the community its chief goal. Independence was measured by an individual’s ability to make his own decisions and the availability of the assistance necessary—from attendants to accessible housing—to have such control."³²

Shortly after the Berkeley center began its operation, other programs opened their doors: in Boston, Massachusetts; Houston, Texas; Columbus, Ohio; and Lansing, Michigan. The movement also gained support in Congress. The original Rehabilitation Act of 1972 included an Independent Living Program to help promote independent living services around the country. Although it was eliminated as part of the compromise with President Nixon in 1973, the Carter administration afforded a new opportunity. The program was established as part of the 1978 Amendments to the Rehabilitation Act and became known as the Title VII program. Despite its very limited funding, the Title VII program breathed life into the incipient independent living movement. It helped establish standards for independent living programs that ensured a high level of consumer control and the provision of core services. In the ensuing decade, the number of independent living centers around the country grew exponentially.

The independent living movement represented nothing less than a radical transformation in thinking about disability policy. One might call it a paradigm shift.³³ Prior to the 1970s, disability was viewed primarily as a medical issue. Persons with disabilities were considered “sick” or “impaired” and in need of a cure. They were patients who required experts’ instructions about how to “get better.” The problem of disability was seen to reside in the individual, who must be “rehabilitated” and returned to gainful employment.

Advocates of independent living saw things differently. Infused with a rights mentality sparked by the civil rights, women’s, and anti-war movements, these individuals wanted to shed the medical model that cast them as passive recipients of professional care. Instead they asserted their rightful place in society. They pursued mechanisms for self-help rather than relying predominantly on authorities. They advocated a consumer spirit that established the role of the consumer as the decision maker and people with disabilities as the experts. And they rejected the idea that persons with disabilities, even persons with severe disabilities, should be isolated in custodial institutions. Instead they promoted community-based living. Moreover, advocates of independent living hoped to improve the lives of people with disabilities by promoting cross disability interaction. People with diverse disabilities could help each other through peer counseling and present a stronger voice for policy change.

According to the philosophy of independent living, the problem of “disability” did not reside simply in the individual, but also in society, in the rehabilitation process, the physical environment, and the mechanisms of social policy. The full potential of persons with disabilities therefore could not be realized simply through trying to “rehabilitate” the individual. “Society” also had to be “rehabilitated,” by making the physical environment more accessible and destroying the attitudes that rendered persons with disabilities as helpless victims in need of charity.

In this respect, the independent living movement was strikingly analogous to previous movements for civil rights. In the early twentieth century, people widely talked of the “race problem,” referring to the presence of blacks in America. The locus of the problem was supposedly the individual black person and his or her supposed inferiority. With the civil rights movement came a new social critique. The problem was not the black person, but pervasive racism. The American economy and social structures tended to exclude blacks, rather than incorporate them as valued citizens. What was needed, therefore, was a transformation of the nature of America’s institutions—through legal measures and a gradual erosion of prejudice. Feminists experienced similar problems, as the social and economic frameworks functioned to limit their opportunities. To give women their rightful place in society, fundamental structural change had to occur. And so it was with the nascent disability rights movement. Advocates argued that people with disabilities should not have to accommodate themselves to a society designed to exclude them. Instead they encouraged disabled persons to assert their right to join society and promoted reforms to facilitate participation.

This social critique, however, was not about subverting core American values. Rather, it was about partaking of the American ideology of liberty and opportunity. Persons with disabilities had the same aspirations as other Americans. This mentality also challenged disability professionals. Many disability rights advocates viewed these professionals as accomplices in discrimination because they treated disabled persons as “sick” patients. In addition, advocates thought some special interest organizations contributed to infantile notions of persons with disabilities by appealing to charity for “helpless” children.

The rise of independent living centers was a crucial aspect of the disability rights movement. But other contributions were also significant: for example, those concerning developmental disabilities and mental illness. Organizations such as the ARC, which endeavored to assist persons with developmental disabilities in living better lives, focused especially on two issues: institutionalization and education. Advocates found appalling conditions and subhuman standards in many institutions for people with disabilities. In addition to exploring ways to develop community based alternatives, they promoted institutional reform. In the early 1970s, the ARC collaborated with a group of Washington-based organizations to pass a law to protect the rights and treatment of persons with developmental disabilities in institutions. By 1975, under the leadership of Paul Marchand of the ARC, the group of organizations formally identified themselves as the Consortium for Citizens with Developmental Disabilities (CCDD). Their efforts culminated in the Developmental Disabilities Assistance and Bill of Rights Act of 1975, which promoted respect for the basic human rights of institutionalized persons. Congress built on this Act in 1980 with the Civil Rights of Institutionalized Persons Act, which gave the Federal Government authority to sue local operators of institutions that consistently violated the constitutional rights of persons in prisons, mental hospitals, and other institutions.

CCDD was also interested in improving educational prospects for persons with developmental disabilities. In this regard they shared the interests of a variety of disability organizations, whose collective efforts assisted in passage of the Education for all Handicapped Children Act of 1975 (more commonly known as Public Law 94-142). This act, supported by persons with disabilities across the spectrum, was a milestone. It had the crucial effect of raising a generation of persons with disabilities who expected to attain a rightful place in American society, not isolation and segregation. This generation would compel its teachers and peers to develop the same understanding. A decade later, it would help mold public opinion about the ADA.

In addition to centers for independent living and disability specific organizations, other important elements of the growing disability rights movement included legal action centers and organizations devoted to political protest. For example, as an outgrowth of a legal activist project in law school, Robert Burgdorf and several other students at the University of Notre Dame established the National Center for Law and the Handicapped (NCLH). With support from the university, the American Bar Association, the ARC, and HEW, NCLH pursued cases around the country to help persons with disabilities. Their first work was based on due process and equal protection law, but Section 504 provided a new and stronger legal foundation. It “seemed like manna from heaven,” said Burgdorf.³⁴ Other legal centers active in promoting the rights of persons with disabilities were the Public Interest Law Center of Philadelphia (PILCOP) and INSPIRE of Georgetown University.

While these organizations concentrated their efforts on the legal front, others focused exclusively on political activism. In 1970, Judy Heumann, who used a wheelchair because of polio, founded Disabled in Action (DIA). It developed out of publicity generated by Heumann’s lawsuit against the New York City Board of Education, which had denied her a license to teach. Heumann and such friends as Denise McQuade, Frita Tankus, and Larry Weisman decided to use the case as a vehicle to heighten attention to disability issues in general. As people with disabilities and their families read and saw the coverage of Heumann’s case, many began calling her about their own experiences: a cry for broader, collective action. Heumann and others felt that existing organizations were not sufficiently politically active: DIA would thus be overtly and exclusively political. It “was made up of young disabled dreamers who believed that fighting for their rights was their obligation,” said Heumann. Two more DIA organizations soon formed in Philadelphia and Baltimore. They were all cross-disability in focus and engaged such issues as transportation, architectural accessibility, television telethons, sheltered workshops, and institutionalization. In 1972, Heumann led DIA to protest President Nixon’s veto of the Rehabilitation Act, culminating with two separate occupations of Nixon’s headquarters just days before the election.³⁵ DIA was also instrumental in protesting HEW’s delay in issuing the Section 504 regulations.

The experiences with political protest, and especially the 1977 demonstrations, led Robert Funk, Mary Lou Breslin, Pat Wright, and Judy Heumann, who were in varying ways associated with the independent living center in Berkeley, to focus on the absence of a national legal defense fund for persons with disabilities. As a partial solution, Heumann helped found the Disability Law Resource Center (DLRC) as part of the Berkeley Center for Independent Living. The purpose of DLRC was to provide legal services to individuals with disabilities: studies had shown that persons with disabilities were not adequately served by state legal services. Robert Funk and Paul Silver were among its leading attorneys.

To help manage the legal affairs of the organization, Funk and Silver hired a young attorney named Arlene Mayerson. Interestingly, Mayerson had no prior experience in disability law; she was trained in civil rights law. But Funk and Silver selected her over scores of applicants, including persons who recounted stories of working with disabled children in camps. “They wanted someone who didn’t have a lot of preconceived notions about what was best for people with disabilities,” Mayerson explained. “They wanted someone who thought in terms of civil rights and whom they could mold in the disability rights movement’s image."³⁶ At DLRC Mayerson addressed any issue people brought to her—being kicked out by a landlord, getting fired, or being denied entrance to a restaurant—with whatever legal means were available at the time.

DLRC was only a two-year model program. As funding approached its end, Funk, Breslin, and Wright decided that a more comprehensive and long-lasting program was needed: a national legal defense fund in the tradition of those for minorities and women. Consequently, in 1980, they created and opened a new organization called DREDF, the Disability Rights Education and Defense Fund. Wright referred to Funk as “the architect” of the operation, the one who was responsible for its stable foundation. Breslin provided the “vision” and excelled at management. Wright described herself as the “political strategist” and the “brawn” of the organization. Mayerson joined these three and represented “the brains” behind the legal operation. This blend of talent, said Wright, was the key to DREDF’s success.³⁷

Through DREDF, Funk, Wright, Breslin, and Mayerson could advocate a national legislative and law reform agenda to provide more leverage for meeting the concerns of persons with disabilities. DREDF had two main goals. The first was “to make disability a real true partner in the civil rights community nationally."³⁸ Up until that time, although many persons were increasingly demanding their own rights, neither the civil rights community nor most disability interest groups viewed disability rights primarily as civil rights. Rather, most groups focused narrowly on their own missions shaped by particular diagnoses and impairments. DREDF hoped to change that. The second goal was to pursue law reform that would provide persons with disabilities legal protections equivalent to those available to other minorities and women.

As a first step toward meeting these goals, DREDF leaders sponsored a meeting in San Francisco in the fall of 1980. They invited prominent strategists, organizers, and attorneys from other civil rights causes. The purpose of the meeting was twofold. First, DREDF wanted to educate the civil rights community about disability. They prepared a briefing book that laid out how the education, employment, and voting problems faced by persons with disabilities were similar to those confronting racial minorities and women. The second objective was to provide DREDF with an opportunity to learn from the successes of other civil rights causes and make contacts so that DREDF and other disability organizations could become full partners in the civil rights community.

Funk, Wright, Breslin, and Mayerson learned an important lesson from the meeting. If DREDF were to achieve its goal of being a truly national legal defense fund, it had to have a presence in Washington. Thus, in 1981, they set up an office in the nation’s capital. There they encountered Evan Kemp, Jr., who, since 1980, ran the Disability Rights Center (DRC)—an organization sponsored by Ralph Nader. Although Kemp worked out of just two small rooms, he donated one to DREDF. Kemp had begun making his own imprint on the disability rights landscape. Since 1976, first under the direction of Deborah Kaplan and then under Kemp, DRC focused its efforts on eliminating employment discrimination by disseminating information and lobbying to retain programs. It also educated the general public about the disability rights movement by submitting articles to newspapers and magazines, and appearing on television shows and radio spots.

One of Kemp’s favorite campaigns was assaulting the image of “pity” that dominated public portrayals of persons with disabilities. He focused especially on the Jerry Lewis Muscular Dystrophy Association Telethon, which, Kemp argued, contributed to prejudice against persons with disabilities. “These prejudices create stereotypes that offend our self-respect, harm our efforts to live independent lives and segregate us from the mainstream of society,” Kemp wrote. Moreover, the telethon reinforced infantile notions of persons with disabilities by showing them as dependent children. It lent credibility to public images of disabled persons as “helpless.” It also underscored the notion of persons with disabilities as “sick” and in need of cure. “If it is truly to help,” said Kemp, “the telethon must show disabled people working, raising families and generally sharing in community life,” and promote independent living programs rather than servile dependence.³⁹ Kemp also defended efforts to integrate persons with disabilities through barrier removal by arguing how it would benefit all Americans: for example, bicyclists and stroller-users taking advantage of curb cuts and subway elevators.⁴⁰

After joining Kemp in Washington, Wright and Mayerson began introducing themselves to people and groups around Washington “to say we’re here to do one thing, and that’s civil rights."⁴¹ The early 1980s, however, were not exactly an auspicious time to be heading to Washington to promote civil rights. President Ronald Reagan entered office with the intention of minimizing federal regulations and reducing government’s role in society, not establishing new rights and more regulations. This placed most persons in the disability movement in a defensive posture, trying to hold the territory already secured rather than launching new expeditions. But DREDF had other things in mind.

One of the most important contacts DREDF made at the 1980 San Francisco meeting was with Ralph Neas, Director of the Leadership Conference on Civil Rights (LCCR). LCCR was the legislative arm of the civil rights movement and coordinated the legislative side of all civil rights initiatives. It worked by the consensus of all conference constituencies: for example, African Americans and women. DREDF believed that any effective campaign to advance the civil rights of persons with disabilities would need the support of LCCR, which carried over thirty years of experience in civil rights, had extensive relationships in Congress, and had firmly established its credibility. Neas described Wright and Mayerson as “thinking five or six years down the line” in their solicitation of LCCR at the conference. And it was at the 1980 meeting, he said, that the strategy for achieving comprehensive civil rights for persons with disabilities was first articulated.⁴²

DREDF was not the first disability organization to join with LCCR. PVA and ACB, for example, had been long-time members of LCCR. DREDF was unique, however, in seeking a tight alliance with the civil rights community as its central mission. Although Wright and Mayerson established a link with Neas and the LCCR as a result of the San Francisco conference, and Wright eventually represented DREDF on the LCCR Executive Board, they did not think they could count on LCCR’s support immediately. First they had to establish their own credibility and get involved in LCCR campaigns as much as any other group. Over the next several years they did precisely that.

31. Shapiro, No Pity, pp. 41–58.

32. Ibid., pp. 53–54.

33. The idea of a paradigm shift is developed more fully in Gerben DeJong, “Independent Living,” pp. 442–44.

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

35. Shapiro, No Pity, pp. 55–58.

36. Arlene Mayerson, interview, October 13, 1993.

37. Wright, interview, November 19, 1993; Wright, telephone conversation with author, April 30, 1997.

38. Mayerson, interview, October 13, 1993.

39. Evan Kemp, Jr., “Aiding the Disabled: No Pity, Please,” The New York Times, September 3, 1981. See also Robert Allen Bernstein, “Do-Good Pitythons,” The New York Times, September 6, 1983.

40. Evan J. Kemp, Jr., “Welcome Side Effects of Helping the Disabled,” The New York Times, January 29, 1982.

41. Mayerson, interview, October 13, 1993.

42. Ralph Neas, interview, January 21, 1994.

First Victory

Sometimes, as in basketball, the best way to launch an offensive assault is to get a good defensive stop—a steal, a forced turnover. President Reagan’s Task Force on Regulatory Relief provided just such an opportunity. No single president since Franklin Roosevelt, wrote one historian, “altered the political landscape so radically and in such a short period” as did Reagan.⁴³ He entered office on January 21, 1981, with the support of a business coalition dedicated to rescuing a languishing, inflation ridden economy. To Reagan, government was primarily an “obstacle to personal achievement and opportunity.” Alternatively, he promoted the idea of the “selfreliant, self-made individual."⁴⁴ For domestic policy, Reagan proposed and obtained the Economic Recovery Tax Act of 1981. This act provided deep personal and corporate tax cuts that primarily benefitted the wealthiest Americans, on the assumption that wealth would trickle down to assist lower-income persons.

By insisting on a combination of tax cuts and vast increases in military spending, President Reagan was able to force a reduction in federal, domestic expenditures. Thus, in addition to freeing up business through tax cuts, Reagan wanted to roll back the development of the welfare state by advocating reductions in social spending. He achieved this aim through the Omnibus Budget and Reconciliation Act of 1981 (OBRA), which cut $140 billion from the federal budget through Fiscal Year 1985. Reagan also hoped to aid businesses, school boards, and government units through a deregulation campaign: the Task Force on Regulatory Relief. He appointed Vice President Bush to lead these endeavors, who in turn designated his chief counsel, C. Boyden Gray, to take charge. Over 150 different pieces of enacted legislation were targeted for analysis.⁴⁵

As Kemp observed, President Reagan’s emphasis on self-reliance and rugged individualism resonated with some aspects of the disability rights movement.⁴⁶ But Reagan’s initiatives did not generally offer hope to the disability community. Reagan’s civil rights record, for example, was cause for concern: he had won his way to the California governorship in part by standing against student and civil rights protests in the 1960s. And his Task Force on Regulatory Relief posed a direct threat to the civil rights gains of the disability community. Three of the early targets of the task force were the Section 504 regulations, the Education for all Handicapped Children Act (P.L. 94-142), and the regulations for the Architectural and Transportation Barriers Compliance Board (ATBCB). Although the ATBCB regulations were relatively technical and non-controversial, changes to Section 504 and P.L. 94-142 regulations had potentially staggering implications.

Section 504 was now known by many as “the Civil Rights Law for the Handicapped."⁴⁷ Any changes to it would be a major defeat and could have dire consequences for other civil rights regulations. As one civil rights attorney explained, persons in the disability community thought the Reagan administration started with disability regulations because “they thought the disability community was the least well organized and they could slip these regulations through and use them as precedents for other regulations."⁴⁸ Deregulation of P.L. 94-142 posed an additional threat to the educational prospects of persons with disabilities, which in turn might jeopardize employment opportunities. The administration also considered introducing legislation limiting the level of service for, and individual attention to, persons with disabilities in the educational process.⁴⁹

Prior to becoming chief counsel to Vice President Bush, Gray had no experience with disability policy. But these regulations immersed him in it, and he gained a new education. The Task Force started with Section 504. By January, 1982, Gray had received a draft of proposed changes from the Department of Justice (DOJ). This draft was leaked, however, and came into the hands of disability organizations, including DREDF. Wright and Funk convened a meeting of nine disability organizations to discuss the proposals, which decided to have DREDF lead the fight.

In March, the Office of Management and Budget (OMB) supplied DREDF with extra ammunition: a leak of OMB’s proposed changes. OMB’s proposals included a provision that would allow federal grant recipients, in certain cases, to weigh the cost of an accommodation against the “social value” of the person involved. “This was a cost-benefit analysis of how human you are,” said Funk. DREDF worked with such organizations as NCIL and ARC to help mobilize disability groups all over the country to protest by writing letters. For NCIL, which was founded that year, this was one of the first opportunities to join other organizations in national advocacy efforts. In Washington, Wright and Funk met extensively with Gray to discuss the details and ramifications of changing the regulations. They were joined by Kemp, who brought a trump card to the table: himself. For over a decade, Gray and Kemp had been bridge partners and had become close friends. Kemp built on this relationship to persuade Gray against permitting damaging alterations to Section 504 and P.L. 94-142. Gray consequently became a mediating force between those rewriting the regulations and the disability lobbyists.⁵⁰

The controversy intensified later in the fall when the Task Force began consideration of the education provisions. Parents of persons with disabilities were outraged and united with other disability advocates to resist President Reagan’s actions. Persons in the disability community organized a nationwide, grassroots letter-writing campaign and flooded the White House with letters—over 40,000 by 1983. As part of the review process, Gray held hearings throughout the country. Thousands of persons and parents of persons with disabilities attended to demonstrate their opposition. They presented testimony explaining the harm that would be caused by changing the regulations. One two-inch-tall Los Angeles headline declared: “Parents of Disabled Children Boo Reagan Proposals."⁵¹ Congress joined these efforts by sending a letter signed by majorities in both chambers urging the president to support the full funding of P.L. 94-142. House Minority Leader Robert H. Michel helped arrange a meeting between Sally Hoerr, president of the Illinois Alliance for Exceptional Children and Adults, and Chief of Staff James A. Baker, III, to enable Hoerr to articulate her opposition.

By January, 1983, Gray had a final draft of the proposed revisions in his hands, but Kemp and Wright pleaded with Gray not to make the changes. Two months later, in part because of Gray’s influence, Bradford Reynolds, Assistant Attorney General for Civil Rights, finally agreed to abandon the regulatory efforts.⁵² And on March 21, Vice President Bush wrote a letter to Kemp informing him that Section 504 and P.L. 94-142 would be left untouched. Bush explained that conversations with members of Congress and with the disability community made him understand the negative impact such changes would have. Especially helpful, Bush said, were the comments of persons with disabilities and their families. “Your commitment to equal opportunity for disabled citizens to achieve their full potential as independent, productive citizens is fully shared by this Administration,” he told Kemp.⁵³

This was a huge victory, a big defensive stop. And it was important not simply for the content of the regulations. What had started out as a threat to roll back years of gains served to unite the disability community. For the first time persons and parents of persons with disabilities and scores of different organizations joined together for a common cause, to defend disability rights. “It showed the disability community that there was a reason to write in all those responses to alerts,” Mayerson said, “and it showed the Administration that there was a political element here as well as a legal righteousness in the cause."⁵⁴ Gray concurred: “One of the things I found is [that] the disability community . . . wanted to be treated as a potent political force just like any other force. [It] was part of the empowerment."⁵⁵

This two-year process was also crucial for the relationships it fostered. Wright, Funk, and Kemp were now close allies. During the ADA deliberations, Funk and Kemp would be working within the administration instead of lobbying it from the outside—respectively as a White House negotiator and Chairman of the Equal Employment Opportunity Commission (EEOC). They would be important links for the disability community. Moreover, through the efforts of Wright, Funk, Kemp, Mayerson, and thousands of Americans, Gray and Vice President Bush had earned a valuable education that would prove indispensable during the deliberations over the ADA. Gray marveled at how Bush “intuitively grasped” disability issues.⁵⁶ Gray and Bush also became genuinely interested in disability issues. Bush, for example, began asking Kemp to write his speeches when he spoke before disability groups, which enabled him to develop relationships with others in the disability community.⁵⁷

43. William C. Berman, America’s Right Turn: From Nixon to Bush (Baltimore: The Johns Hopkins University Press, 1994), p. 118.

44. Ibid., p. 88.

45. Boyden Gray, interview, October 23, 1996.

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

47. DeJong and Lifchez, “Physical Disability and Public Policy,” p. 40.

48. Rochelle L. Stanfield, “Reagan Courting Women, Minorities, But It May Be Too Late to Win Them,” National Journal, May 28, 1983, p. 1121.

49. Charles R. Babcock, “Handicapped Policy Undergoing a Rewrite,” The Washington Post, March 4, 1982, p. A27.

50. Felicity Barringer, “How Handicapped Won Access Rule Fight,” The Washington Post, April 12, 1983, p. A8.

51. Mayerson, interview, October 13, 1993.

52. Barringer, “How Handicapped Won Access Rule Fight,” p. A8.

53. Vice President George Bush to Mr. Evan Kemp, Jr., March 21, 1983, in possession of Evan Kemp.

54. Mayerson, interview, October 13, 1993.

55. Gray, interview, October 23, 1996.

56. Ibid.

57. Evan Kemp, interview, December 16, 1996.

Building a Winning Record

Washington likes winners. Throughout the 1980s, the disability community recorded an impressive string of judicial and legislative victories that helped build the disability movement’s credibility in Washington. In the process, crucial networks continued to develop. The DREDF-arranged San Francisco conference of 1980 laid the foundation for forming an alliance with the civil rights community. Neas reports meeting with Wright and Mayerson at the conference and notes one occasion in which Wright emphasized that it was extremely important to be victorious in the first civil rights battle for people with disabilities. They therefore decided to tackle something comparatively small: the issue of voting accessibility.⁵⁸ The goal was to ensure that the principle of the 1965 Voting Rights Act, equal access to voting, encompassed persons with physical impairments. Wright and Neas and others achieved this goal with the passage of the Voting Accessibility for the Elderly and Handicapped Act of 1984. Neas explains that this victory was absolutely crucial: “If we had not won on the Voting Rights extension, . . . I don’t think we would have won any civil rights bills after."⁵⁹ Indeed, many more difficult challenges lay ahead, and that victory was an important foundation for facing them.

The activities of the disability community in the 1980s may largely be viewed as a defensive effort to sustain the gains of the 1970s. In addition to the deregulation efforts of the Reagan administration, the disability community also faced a Supreme Court that did not enforce the disability rights that had been attained and threatened to overturn established provisions. In fact, the preponderance of legal activity within the disability community during the 1980s related to the Supreme Court and its rulings. Things did not start out well. In a 1979 Supreme Court ruling in Southeastern Community College v. Davis, the Court questioned the viability of the regulations developed to implement Section 504. The case addressed a nursing school’s responsibility to accommodate the needs of a hearing-impaired applicant. The Court’s conclusion that such accommodations were not required by the school was a significant defeat for the disability community.

The Supreme Court did not take on another Section 504 case for five years, but in 1984 the results were much more encouraging. In Consolidated Rail Corporation v. Darrone, the Court affirmed that the Section 504 regulations did indeed apply to employment discrimination. DREDF had taken the lead in arguing the case for the disability community and was pleased to see its efforts pay off: the Court established that courts must give considerable deference to the 504 regulations. This decision reflected the results of a Pennsylvania District Court case, Nelson v. Thornburgh, which ruled that the state’s Department of Public Welfare was obligated to absorb the costs of readers or electronic devices for visually-impaired employees, because the cost did not constitute an “undue hardship.”

The Supreme Court’s decisions, however, were not all positive for the disability community in the 1980s. From 1984 to 1986, the Supreme Court handed down six cases with, at best, mixed results. In the 1985 decision Alexander v. Choate, the Court ruled against a group of Medicaid claimants, alleging the state violated Section 504 by reducing the number of days Medicaid covered for inpatient hospitalization. They argued the policy had a disparate impact* on persons with disabilities and that the policy should therefore be prohibited. Although the Court decided against the plaintiffs by affirming the policy, it made an important ruling on the nature of disability. The Court stressed that disability discrimination came most often not in the form of direct, conscious discrimination, but rather by unconscious neglect: curbs without ramps for wheelchairs, for example. Laws directed against disability discrimination therefore had to target discriminatory practices deeply embedded in society.

Also in 1985, in City of Cleburne, Texas v. Cleburne Living Center, the Court considered whether a state zoning agency could exclude a group home for persons with developmental disabilities. The Court rejected an argument that persons with disabilities should be treated as a “quasi-suspect” class, which would warrant heightened judicial scrutiny for policies treating a group as a class. But it did establish an important principle by ruling that the exclusion was unconstitutional. The Court decided that the group home did not pose any “special threat” to the city’s “legitimate interests.” Rather, the exclusion was based on “irrational prejudice.” Discrimination against persons with disabilities, in other words, could not be justified by ignorance.

The four remaining cases prompted the disability community to solicit Congress to pass legislation devoted to overturning the Supreme Court’s rulings. In 1986 alone, Congress passed three acts to reverse Supreme Court decisions. The Handicapped Children’s Protection Act reversed the 1984 ruling Smith v. Robinson by ensuring that parents had the right to reasonable attorneys’ fees when successful in litigation. The Civil Rights and Remedies Equalization Act overturned Atascadero State Hospital v. Scanlon by establishing that states may not be immune from alleged Section 504 violations filed in federal court. And the Air Carriers Access Act overturned U.S. Department of Transportation v. Paralyzed Veterans of America by requiring that commercial airlines be subject to the accessibility standards of Section 504, regardless of whether they received federal assistance. Through these cases, the disability community attained a new level of legal sophistication. It also developed important connections. For the Handicapped Children’s Protection Act, for example, Wright and Mayerson worked extensively with Robert Silverstein, who later helped orchestrate the ADA deliberations in the Senate.

The most significant Supreme Court decision was the 1984 ruling in Grove City College v. Bell. This case concerned Title IX of the Education Amendments Act, which prohibited discrimination on the basis of sex in all programs receiving federal assistance. Although the Court sustained the principle of nondiscrimination, it ruled that the Title IX sanction of cutting off federal funds would be applied only to the particular program in question and not the entire institution. This decision had a profound impact on the entire civil rights community. Since the language prohibiting discrimination on the basis of sex in federally assisted programs or activities was identical to that for discrimination on the basis of race, age, and disability, it affected all groups equally. Consequently, overturning this decision and returning the civil rights statutes to their previous interpretation became the top priority for LCCR and the civil rights community.

This gave the disability community a perfect opportunity to work side-by-side with other civil rights groups as equal members and partners. It took three years for them to see their objective met in the Civil Rights Restoration Act, which had to be passed over President Reagan’s veto. Mayerson, the chief attorney for the disability community, explained the significance of this act: “Not only could [the civil rights community] see that we could again do the work as well as they could and do the legal analysis as well as they could, but we were also actually able to open a few doors that weren’t traditionally open in the civil rights community."⁶⁰ Wright and Mayerson could build on the contacts they had made in their own disability-specific work and bring them to bear on the civil rights community’s endeavors. Moreover, as Neas explained, “those four years enabled about thirty or forty people to get to know one another really well, and we went to hell and back [on] a legislative roller coaster ride.”  Those experiences, while trying, made for meaningful relationships and developed the trust necessary for effective collaboration.⁶¹

Two further victories are important to understanding the ADA’s future success. The first is another Supreme Court case, the 1987 decision in School Board of Nassau County, Florida v. Arline. In this case a school board fired a teacher exclusively because she was found to be susceptible to tuberculosis. Her attorneys tried to gain her protection under Section 504 as a handicapped person. The Court obliged them, ruling that a person with a contagious disease may be deemed a “handicapped person.” Such a decision, however, had to be based on an individual basis to determine whether an individual could do a job with or without a reasonable accommodation and if there were scientific evidence that the person posed a substantial health risk to others. This was a significant victory for the disability community because it made a powerful statement against “fearful, reflexive reactions” to people and confirmed that the discrimination faced by persons with disabilities is often based on fear and misapprehension, not on reality.⁶²

A final major victory for the disability community in the 1980s came with the Fair Housing Amendments Act of 1988, which expanded the protections afforded by the Fair Housing Act of 1968 and prohibited discrimination in the sale or rental of housing on the basis of disability. The Fair Housing Amendments Act was significant for several reasons. First, it added to the momentum the disability had been building throughout the 1980s. Its passage in September, following introduction of the ADA in April, gave a big boost to the ADA. Second, it afforded people with disabilities another opportunity to work with the civil rights community on one of its top priorities. But now, for the first time, disability was an important component in a major civil rights legislative initiative. Moreover, the disability community formed a close alliance with organizations advocating the rights of persons with the Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS), who were protected under this act as persons with disabilities. Third, the Fair Housing Amendments Act broke new ground with respect to civil rights for persons with disabilities by incorporating provisions that applied to the private business sector as well as to recipients of federal funding. And Fourth, the act provided an important foundation for the ADA by building on the Arline decision: it provided that unless an individual with a contagious disease posed a “direct threat” to the health and safety of others, discriminatory practices against such persons was unlawful.

Enactment of the Fair Housing Amendments Act on September 13, 1988, marked the end of a string of national, legislative victories during the 1980s. These accomplishments were crucial for the ADA’s success. As Mayerson explained: “The respect for the legal, organizational, and negotiation skills gained during these legislative efforts formed the basis of working relationships with members of Congress and officials of the administration that proved indispensable in passing the ADA."⁶³

*“Disparate impact” refers to indirect results of policy or action. In this case, plaintiffs alleged that the policy of reducing the number of covered days, while not expressly discriminating against persons with disabilities, would nonetheless have that effect because persons with disabilities were the most likely to require longer hospital stays.

58. Neas, interview, January 21, 1994.

59. Neas, interview, December 10, 1983.

60. Mayerson, interview, October 13, 1993.

61. Neas, interview, December, 10, 1993.

62. School Board of Nassau County, Florida v. Gene H. Arline, 107 S.Ct. 1124 (1987).

63. Arlene Mayerson, “The History of the ADA: A Movement Perspective,” in Implementing the Americans with Disabilities Act: Rights and Responsibilities of All Americans, ed., Lawrence O. Gostin and Henry A. Beyer (Baltimore: Paul H. Brookes Publishing Co., 1993), p. 21.

Grass Roots Activism

Although the legal battles won in Washington were of critical importance, equally important activities were taking place around the nation. As Mayerson writes, the history of the ADA began “in cities and towns throughout the United States when persons with disabilities began to challenge societal barriers that excluded them from their communities, and when parents of persons with disabilities began to fight against the exclusion and segregation of their children. It began with the establishment of local groups to advocate for the rights of persons with disabilities."⁶⁴ While the 1970s witnessed the creation of the disability rights movement, the 1980s experienced its blossoming, which came with a flurry of grass roots activism.

Thousands of people around the country contributed to the disability rights movement. For many people with disabilities, college was a life-changing experience that marked the beginning of political action and underscored the importance of community. Roland Sykes, a student at Wright State University in Dayton, Ohio, was one example. He selected Wright State after his spinal cord injury because the university made concerted attempts to achieve campus accessibility. There Sykes joined with over 20 other students with disabilities who, as Ed Roberts had done at Berkeley, promoted a more accessible campus. This affirmed an important lesson Sykes had learned as a member of United Mine Workers of America: the power of collective bargaining. Joining with others not only provided emotional support, it added leverage in dealing with campus administrators. For example, students at Wright State helped create an adapted athletic program for persons with disabilities. “If it had been one person against [the] system, that never would have happened,” Sykes said.⁶⁵ Students also succeeded in starting a pilot program for persons with disabilities. After all, the school was named after the famous Wright brothers who made history by taking to the air. People with disabilities had the same desire to fly.

Another example was the disability community growing at Brooklyn College in New York, where Denise Figueroa gained a better understanding of living with polio by interacting with other students. At Brooklyn College she participated in her first demonstration: a protest against President Nixon’s veto of the Rehabilitation Act. She and her peers were also able to use student government funds to send students to the annual meeting of the President’s Committee on the Employment of the Handicapped. This provided an opportunity to make contacts with students from other college campuses who were also developing their own disability communities and fostering local activism. Even if students did not network directly with disabled students at other campuses, simply knowing that others shared the same goals was empowering.

While Figueroa relished the opportunities college provided, she realized that she could not always rely on its architectural accessibility. “If I ever wanted to leave the campus and be able to participate in the community, we had to change the community too,” she observed.⁶⁶ This understanding led many people to take their community-based activism beyond the college campus. In 1976, for example, students at Wright State University sued the city of Dayton under the Urban Mass Transit Act, which said that public transportation should service all citizens, including people with disabilities and the elderly. Disabled activists won the case and secured a mandate that all transportation vehicles had to be accessible. Had it not been for the mobilization of the disability community, however, the transit authorities simply would not have taken the initiative.

Outside of college campuses, the growing network of independent living centers served as crucial “community gathering places,” as Mark Johnson called them.⁶⁷ Among other things, they fostered emotional support through peer counseling and thereby spread the “gospel” of disability rights and local action. Charlie Carr, for example, said that Fred Fay, who visited Carr at a hospital that he resided in while attending Massachusetts Bay Community College, “put a fire under me.” Fay demonstrated that a person with quadriplegia could be mobile, have one’s own apartment, drive a car, get married, have children, and earn a Ph.D.—”all the things that I would lay in bed and look up at the ceiling and think that I would never have,” Carr said.⁶⁸ As a founding member of the Boston Center for Independent Living and one of the first to use its services, Carr obtained his own housing, attendant care, and became an ardent activist.

Independent living centers drew on the learning experiences of other centers. In Denver, Colorado, the center known as Atlantis set an example of taking sledgehammers to sidewalks for fashioning curb cuts. Under the leadership of Wade Blank, Atlantis members also took busses hostage overnight to demand accessible transportation. Such demonstrations could be an effective tactic, as they were in Tulsa, Oklahoma, for example. After becoming Executive Director of the independent living center Ability Resources, in 1983, Sykes joined with Woody Osburn and others to organize Tulsans for Accessible Public Transportation (TAPT). Since they were unable to find an attorney willing to pursue litigation, they decided to use public opinion as an alternative and pressured local mayoral candidates and members of the transit board to promote accessible transportation. Between 1984 and 1988, by using such dramatic tactics as chaining themselves to buses, members of TAPT helped swing elections to mayoral candidates who supported their cause. TAPT also targeted transit board members, who were volunteers, and had demonstrators follow them around town, compelling many to resign. Progress in achieving transportation accessibility, though slow, was real. And it illustrated the power of community action.

Public demonstrations were fruitful in other contexts as well. Johnson, for example, gained his first taste of activism through the Metrolina Independent Living Center in Charlotte, North Carolina. It was 1980, and Metrolina activists learned that a local mall was developing an inaccessible theater. After seeking to work with the architects to no avail, Johnson and others staged a protest as a media event. Mall administrators responded in just a few weeks by installing a wheelchair lift. Public, media-oriented protests were not the only manifestation of grass roots activism. Subtler actions included placing warning cards on the windshields of cars illegally parked in spaces reserved for people with disabilities.

Perhaps no single group epitomized grass roots activism more than people who considered themselves members of ADAPT—American Disabled for Accessible Public Transportation. The groundwork for ADAPT was laid by the Atlantis community in Denver in the early 1980s. Atlantis activists decided they wanted to develop a national effort to promote transportation accessibility through public protests. They approached NCIL to coordinate and sponsor the activities. Although NCIL publicly stated its support of accessible transportation, it was unwilling to advocate nationwide civil disobedience. People at Atlantis and other independent living centers, for example Bob Kafka and Stephanie Thomas in Houston, Texas, thus decided to organize their own grass roots organization. They made it radically decentralized. “It’s not incorporated,” Johnson explained: “no board, no president, no budget."⁶⁹ Rather, people from around the country identified themselves with ADAPT informally, based on their trust of others associated with the group. ADAPT’s activities were the product of volunteers and relied on networks of activists who could join its efforts.

ADAPT’s most significant undertakings were its demonstrations at the annual meetings of the American Public Transit Association (APTA), held each fall in a different city. ADAPT targeted APTA because it was singularly most responsible for opposing accessible transportation. APTA had won a law suit against the Department of Transportation and thereby overruled the department’s Section 504 regulations. These regulations had required the purchase of accessible vehicles. But, according to the court decision, each local transit authority could determine the extent to which it made its services accessible. Members of ADAPT basically decided to shadow APTA until federal transportation laws changed. They began by disrupting APTA’s conference in Denver in 1983. ADAPT rallied the following year in Washington, D.C., in Los Angeles in 1985, in Detroit in 1986, and in San Francisco in 1987, coincidentally on the tenth anniversary of the Section 504 protests. ADAPT also surprised APTA by traveling all the way to Canada for one of its meetings. By the 1989 deliberations of the ADA, APTA had largely resigned itself to equipping buses with lifts for public transportation. ADAPT had played a significant role in this change of heart.

ADAPT’s efforts at coordinated action on the national level reflected a significant trend toward establishing vast networks for collective action, which accelerated during the 1980s. ACCD had been the first organization to develop a broad, cross-disability network. Under the authorship of Frank Bowe, ACCD published books to facilitate this growth. Coalition Building: A Report on a Feasibility Study to Develop a National Model for Cross-Disability Communication and Cooperation appeared in 1978.⁷⁰ The next year, Planning Effective Advocacy Programs became available to fledgling organizations seeking integration into the ACCD network.⁷¹ In the 1980s, however, ACCD began to unravel. Fiscal restraint imposed by the Reagan administration reduced the levels of available grant money, on which ACCD depended. In the absence of private funding, ACCD could not sustain its operations. Member organizations also felt the budget crunch, which caused many to turn inward and focus more on their own survival. Furthermore, internal conflicts over the focus of ACCD’s mission, predominantly concerning the degree of attention devoted to advocacy, reduced ACCD’s effectiveness. In 1985, ACCD officially closed its doors.⁷²

Other organizations tried to fulfill some of ACCD’s functions. Shortly after the establishment of the Title VII Independent Living Program in 1978, RSA convened a meeting of all centers supported by the grant. Marca Bristo, Director of Access Living in Chicago, described it as a “magical” time in which people from around the country were able to share their experiences. There was a “sense of excitement,” she said, and a “thirstiness” for greater levels of interaction. This laid the groundwork for the founding of NCIL in 1982, by Bristo, Max Starkloff, Bob Williams, Jim DeJong, and others. Starkloff was the first president and Bristo the first vice president.⁷³ In 1986, Bristo became president of NCIL.

NCIL’s main purpose was to facilitate the creation and maintenance of independent living centers. Throughout the 1980s, NCIL, as ADAPT, had no centralized headquarters, but rather coordinated its efforts through networking and the contributions of volunteers from local centers and other organizations. NCIL presented itself as the only cross-disability, national grassroots organization that was run by and for people with disabilities. For example, at least 51 percent of all independent living center staff had to be people with disabilities to qualify for membership. NCIL offered a national voice to the philosophy of independent living by promoting the rights, empowerment, and self-direction of people with disabilities. Its first major challenged involved working with the Federal Government to implement standards for the creation and operation of independent living centers. Consumer control was the major issue, and it took years for NCIL to compel the Federal Government to adopt its proposals. As NCIL battled Washington, it also established grass roots networks throughout the country, through which NCIL could funnel information to members and solicit advocacy for political initiatives.

In 1985, Sykes augmented NCIL’s networking by creating a computer network. The network was started as the NCIL Computer Network and received funds from NCIL. Its purpose was to facilitate the information-intensive mission of NCIL. But as the network grew, the name was changed to DIMENET—Disabled Individuals Movement for Equality Network. DIMENET helped people with disabilities get online at the advent of the information age, giving them easy and inexpensive access to computer networking. By dialing into a local computer, and paying only for long-distance charges, callers could open electronic mail accounts, join discussion groups, and post files. It gave independent living centers a central clearing-house for information about the experiences of other centers and enabled them to download files. DIMENET was also a means to linking disability advocates in Washington to people with disabilities around the country.

NCIL and ADAPT were not alone in fostering grass roots networking during the 1980s. Other disability-specific organizations, including NFB, ARC, NAD, and PVA, continued to expand their own membership. Consequently, by the time the ADA was introduced in Congress, dozens of mailing lists were available to serve as links between developments in Washington and the rest of the country. Moreover, the face of the disability community was changing. The Education for Handicapped Children Act was helping to raise a generation of persons with disabilities who expected to attain a respected place in society. Technical assistance training contracts such as those with DREDF helped arm individuals with legal knowledge. And such organizations as NCIL, ADAPT, ARC, UCPA, NAD, and NFB helped people with disabilities unite as a collective voice.

64. Mayerson, “The History of the ADA,” p. 17.

65. Roland Sykes, interview, March 5, 1997.

66. Denise Figueroa, interview, March 12, 1997.

67. Mark Johnson, interview, March 7, 1997.

68. Charlie Carr, interview, March 14, 1997.

69. Johnson, interview.

70. Bowe, Coalition Building: A Report on a Feasibility Study to Develop a National Model for Cross-Disability Communication and Cooperation (Washington, D.C.: American Coalition of Citizens with Disabilities, 1978).

71. Frank Bowe, Planning Effective Advocacy Programs (Washington, D.C.: American Coalition of Citizens with Disabilities, 1979).

72. Rubenfeld, interview; Fiorito, interview.

73. Marca Bristo, interview, May 29, 1997.

The Disability Community in 1988

Although the 1980s began by putting the disability community and the broader civil rights community on the defensive, Wright, Kemp, Neas, Funk, Mayerson, and many other leaders were able to achieve significant victories. “Piece by piece we put together a decade of legislative success,” Neas observed.⁷⁴ In fact, he said, while the going was tough in dealing with the policies and practices of the courts and the Reagan administration, in Congress the “the 1980s, in all honesty, . . . were a bipartisan reaffirmation of civil rights and a bipartisan rejection of right-wing philosophy."⁷⁵

Many people in the disability community, as well as such organizations as DREDF, aimed for the implementation of comprehensive civil rights protections for persons with disabilities. But a record of legislative success, coalition-forming, and grass roots organizing had to be established first. And in the decade between the Section 504 demonstrations and passage of the Fair Housing Amendments Act, the disability community laid the necessary foundation. It earned the respect of the civil rights community. Talented leaders such as Wright proved their negotiation and legislative skills. People with disabilities formed an extensive and indispensable network of contacts with Congress and the administration. Through such disability rights attorneys as Mayerson, Burgdorf, Feldblum, Weisman, Tim Cook (with the National Disability Action Center), Bonnie Milstein (with the Mental Health Law Project), and Karen Peltz-Strauss (with the National Center for Law and the Deaf), the disability community reached new levels of legal sophistication. And throughout the country, hundreds of communities organized to improve the lives of disabled Americans by winning local battles: pockets of the United States were crafting stronger protections and providing greater access for persons with disabilities. These developments had a profound impact. “By friend and foe alike,” observed Mayerson, “the disability community was taken seriously—it had become a political force to be reckoned with in Congress, in the voting booth, and in the media."⁷⁶

No single activity or single event accounts for this success. Rather, it was due to the combined effect of the disability community’s efforts. “No one particular tactic is more valuable than another,” Mark Johnson said of his campaigns to achieve transportation accessibility. “If you’re an activist and an organizer, you have a fully developed strategy."⁷⁷ Indeed, the genius of the disability community’s political mobilization was that it pushed for change in so many different ways, by so many different people. The diverse efforts were not necessarily coordinated, but the cumulative effect was the creation of fertile soil in which an ADA seed could flourish. As Mayerson aptly concludes: “The ADA owes its birthright not to any one person or any few, but to the many thousands of people who make up the disability rights movement—people who have worked for years organizing and attending protests, licking envelopes, sending out alerts, drafting legislation, speaking, testifying, negotiating, lobbying, filing lawsuits, and being arrested—doing whatever they could for a cause in which they believed."⁷⁸

74. Neas, interview, January 21, 1994.

75. Neas, interview, December 10, 1993.

76. Mayerson, “The History of the ADA,” p. 21.

77. Johnson, interview, March 7, 1997.

78. Mayerson, “The History of the ADA,” p. 17.