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.
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