In April 1977, the American Coalition of Citizens with Disabilities (ACCD) become frustrated with the Carter administration’s failure to issue rules implementing Section 504 of the Rehabilitation Act of 1973, a provision that guaranteed a limited set of nondiscrimination rights to people with disabilities. After Secretary of Health, Education, and Welfare (HEW) Joseph Califano suggested the need for further study, the ACCD, an umbrella organization of disability groups, called on people with disabilities around the nation to protest the delay. Approximately 150 activists showed up at the regional offices of HEW in San Francisco and began a sit-in that lasted for twenty-five days, the longest in American history. They intentionally chose the tactic of the sit-in to draw parallels between disability rights and the African American fight for equal dignity. The Section 504 sit-in brought together a cross-impairment and racially diverse group of the disabled, supported by a legion of radical organizations in the Bay Area, from the Black Panther Party, which supplied hot meals, to the gay rights Butterfly Brigade, which smuggled walkie-talkies into the building after federal officials cut the telephone lines. For many activists who participated, the diversity present and the organizational cooperation exemplified the inclusivity of the civil rights struggle. “The whole thing was like a living role model” of “the purpose . . . embod[ied] in those regulations,” recalled Mary Lou Breslin. Another protester, Ron Washington, found himself moved by “the comradeship around political needs and the working together to get those needs taken care of,” so much so that he was reluctant to leave the federal building at the conclusion of the protest.Footnote 1
Given the resonance of the Section 504 sit-in, the estrangement between many people of color and a movement that aspired to speak for all people with disabilities is rather puzzling. Despite the fact that racial minorities report higher rates of disabilities than whites, Chris Bell and Josh Lukin argue that disability studies scholarship largely chronicles the achievements and experiences of white Americans.Footnote 2 The alienation extends beyond historiography. During the Section 504 protest, Ed Roberts proclaimed that the disabled were the nation’s largest minority group. Footnote 3 Disability rights activists, however, have sometimes borrowed from the iconography of black history in awkward ways. In 1986, for instance, ADAPT founder Bob Kafka asked civil rights heroine Rosa Parks to lead his group’s protest against the American Public Transit Association in Detroit. Not wanting to embarrass the black political establishment of her hometown, including Coleman Young, the city’s first African American mayor, Parks refused, much to the dismay of the many disability rights activists who admired her.Footnote 4 A few years later, during congressional debate over the Americans with Disabilities Act (ADA), supporters of the law repeatedly resorted to racially coded language by promising that it would turn people with disabilities from welfare recipients into productive, taxpaying citizens.Footnote 5 Of course, the disability rights movement is not alone in facing accusations of privileging white voices and white experiences.Footnote 6 Nor are black activists necessarily attuned to disability-based injustices.Footnote 7 But what is striking is the extent to which estrangement emerged despite moments of racial solidarity and despite activists’ professed commitment to racial justice.
Drawing from oral histories, records of the Center for Independent Living (CIL) in Berkeley, California, and congressional documents, this article grapples with the struggles of disability rights activists to create a racially inclusive movement of people with disabilities.Footnote 8 Lukin suggests that the tension between disability advocacy and black activism has been present since the earliest days of the disability rights movement.Footnote 9 Accordingly, in this article, I focus on the period between 1970 and 1980, which spans the founding of the Physically Disabled Students Program (PDSP), the first organization dedicated to independent living and self-help, to the end of the Carter presidency. During this decade, the independent living movement became the grassroots vanguard of a broader but loosely connected coalition that included the deaf, the blind, parents of disabled children, self-advocates, and people with psychiatric and developmental disabilities.Footnote 10 Many of the ideas regarding independence, consumerism, and empowerment developed by these activists shaped the political discourse of disability rights in the 1980s.
This article contributes to our existing understanding of disability rights in two ways. First, it draws attention to the work of grassroots activists and volunteers, especially those in California, who were vital to the development of disability rights as a national social movement. The approach complements existing histories of disability policy, which emphasize the “insider” efforts of members of Congress, their staff, and program bureaucrats when explaining the development of disability programs.Footnote 11 By contrast, the focus on “outsiders” sheds light on how activists labored to incorporate racial justice into what they saw as a larger movement for basic human rights. Second, the article enriches existing assessments of disability rights activism. Much of the scholarship on the contemporary movement points out that activists were quick to adopt conservative criticisms of “big government” as intrusive and “condescending . . . toward those it supposedly serves.”Footnote 12 Indeed, some scholars view the activists as privileged and politically savvy libertarians, who rejected pity, charity, and welfare and allied with Republicans to secure passage of the ADA.Footnote 13 These assessments, however, do not fully capture the challenges activists faced not only in uniting disparate groups of the disabled but also in articulating a strategic vision of egalitarianism. Movement leaders claimed that, despite differences in their impairments, the disabled shared the experience of social isolation and exclusion. Some of them also recognized that race, socioeconomic class, and gender mediated the ways in which disabled individuals were marginalized. Yet they remained uncertain about how to fold racial equity into disability rights. My purpose is to embed their search for unity among the disabled within a larger institutional context and to illustrate the ways in which that context complicated efforts to forge an agenda to address exclusion in all its forms.
To do so, I use Desmond King and Rogers Smith’s concept of racial institutional orders. According to King and Smith, racial institutional orders are coalitions of political institutions, organizations, and actors that are held together by shared beliefs about race and common aims with respect to race relations. Political leaders maintain these coalitions by pursuing governing agendas that distribute authority, resources, and prestige along racial lines. Competition between two such orders, one committed to white dominance and the other to egalitarianism, has shaped American political debates over citizenship across time and has informed the nation’s conflicts over other forms of hierarchy, including economic and gender inequality.Footnote 14 Viewing disability advocacy through the lens of racial orders moves us beyond thinking of disability rights activists as merely strategic or inherently libertarian. Instead, the perspective calls attention to activists wrestling with vexing questions of identity, equality, and state action amid political and institutional terrain upended by the African American civil rights movement. Attention to racial institutional orders, in short, allows us to understand how disabled activists could yearn for racial solidarity yet still fall short of racial inclusivity.
The independent living movement came into being at a time when America’s racial order was in turmoil. In the 1960s, blatant white supremacy gave way to a formal commitment to egalitarianism, not just with respect to race but also gender. By the 1970s, however, efforts to transform social and economic institutions so as to achieve egalitarianism in fact, rather than just in name, had stalled.Footnote 15 This article examines both how disability rights activists navigated this turbulent political landscape and how these activists took advantage of these changes in an effort to transform disability policy. Politically awakened by the campus radicalism of the 1960s, independent living activists used federal resources available to antipoverty organizations to found grassroots associations devoted to liberation politics. They rejected prevailing government programs, which they saw as contributing to their subordination, and instead lobbied for programs that would promote collective action and the right of self-determination. Braiding New Left ideals of equality with the antigovernment sentiment of the New Right, they sought to create a grassroots network of self-help centers that would teach individuals with disabilities how to achieve self-determination and, they hoped, unite people with disabilities—long divided along cleavages of impairment, age, gender, race, class, and military service—into a political force. But as the consensus supporting New Deal liberalism collapsed in the 1970s so did the momentum behind independent living. Federal social welfare policy came to prize self-sufficiency rather than self-determination, and activists found it difficult to incorporate minority voices. Though they aspired to an inclusive movement, in practice, activists could not overcome institutions that separated antipoverty and racial politics from disability policy. The transformation of disability rights during this period culminated, in the 1980s, with advocates demanding the “opportunity to be productive” so they could break the “bondage of unjust, unwanted dependency.”Footnote 16
Disability, Race, and New Deal Liberalism
Throughout the late nineteenth century and for most of the twentieth century, disability and color remained intimately intertwined as justifications for the denial of equal rights. Between 1880 and 1920, theories of scientific racism equated whiteness with physical fitness, mental rigor, and genetic superiority. During the Gilded Age and Progressive Era, widespread beliefs that blacks, Mexicans, and Asians were inferior races justified a host of white supremacist measures, including segregation, immigration quotas, compulsory sterilization, and antimiscegenation laws. So pervasive was the prejudice against impairment and blackness that mainstream organizations representing the blind and the deaf remained racially segregated and avoided association with groups representing other forms of disablement.Footnote 17 Even as it erected an edifice for security against the vagaries of capitalism, the New Deal reaffirmed the existing order of white dominance.Footnote 18 Labor policy enforced norms of breadwinning by supporting collective-bargaining arrangements that secured the family wage and publicly subsidized health and retirement benefits for a largely white and male workforce. Social insurance protections against old age and disability were available to workers who held industrial jobs, at the time reserved almost exclusively for white men. By contrast, reasoning that domestic chores did not constitute “work,” vocational rehabilitation (VR) counselors routinely denied services to women too impaired to fulfill household duties, and most African Americans remained locked out of Social Security until 1950, when Congress extended eligibility for Old Age Insurance (OAI) to agricultural and domestic workers.Footnote 19 Dependency became a status reserved primarily for women and racial minorities, who, cut off from breadwinning, were compelled to rely on private charities, public coffers, and the wages of breadwinners for their economic well-being.Footnote 20 Postwar disability activism took root within this racial order. Between 1930 and 1950, disability organizations, such the League of the Physically Handicapped, the American Federation of the Physically Handicapped, and the National Federation of the Blind, petitioned the federal government for increased job opportunities for the disabled. Their campaigns, however, were waged largely, though not exclusively, by white men demanding access to a labor market where race dictated the jobs available, the working conditions, and the prevailing wages.Footnote 21 While they challenged the denial of opportunity to the disabled, few activists questioned exclusions premised on race or gender. The independent living activists of the 1960s, by contrast, aspired to create racially diverse cross-disability organizations. Their movement arose first on college campuses, where higher education programs for veterans and polio survivors brought young people with mobility impairments together, and where, in California, the assertiveness of blacks, Asian Americans, and Chicanos affiliated with the Third World Liberation Front offered them a template for defiance of the status quo.Footnote 22
By the 1960s, institutions that shored up economic security during the decades following World War II operated in tension with demands for equal respect of people of marginalized identities. The social upheaval of the decade presented independent living activists with both an opportunity to rethink breadwinning as the organizing motif for social policy and the resources to build an organizational infrastructure for political action. Seeking to empower the poor, planners of the War on Poverty created a variety of programs that brought resources into disadvantaged communities to help the poor build job skills and fight entrenched interests. Advocates for the poor used these programs to build welfare rights organizations and to pressure local officials to address the demands of impoverished groups.Footnote 23 Disabled activists capitalized on them as well.
Strongly influenced by the civil rights and women’s movements, independent living activists rejected the premises of federal disability policy, which they believed reinforced widespread social perceptions that the disabled were fragile, passive, and incapable of leading productive lives. They singled out in particular vocational rehabilitation programs, which routinely excluded the severely disabled as unsuitable for employment, and income support programs like Supplemental Security Income (SSI), which provided a minimum income based on the recipient’s presumed incapacity for productive work. These positions set them apart from their counterparts in the black civil rights and welfare rights movements, who lobbied Congress throughout the 1970s to make income support more widely available to the poor. Disability rights activists, by contrast, sought to reorient policy from self-sufficiency and compensation toward self-determination and empowerment, a position also at odds with established disability organizations, which fought to expand rehabilitative and pension programs. These young men and women instead shared their generation’s antipathy toward all things big—Big Government, Big Business, and Big Labor. Embracing do-it-yourself social change, they strove to create a tapestry of community-based organizations controlled by people with disabilities, providing services that the disabled demanded, and awakening individuals to political action on behalf of disability rights. As such, activists did not necessarily seek inclusion in the New Deal’s promise of economic security so much as they offered a biting critique of it by embracing a discourse of risk taking, consumerism, and perverse incentives.
Independence as Self-Determination Rather than Self-Reliance
In the 1960s, federal programs either corrected or compensated for disabilities.Footnote 24 Men who became impaired because of military service or industrial accident learned, through VR programs, to “overcome” their disabilities and resume their rightful place as breadwinners. Those who could not were “compensated” for their lost earning capacity through public and private disability pensions.Footnote 25 Much of the administrative apparatus of the New Deal state was devoted to figuring out which programs individuals belong to given their medical impairment, age, and employment history. Once sorted into the proper categorical programs, individuals then faced a phalanx of administrators, rehabilitation specialists, physicians, therapists, and social workers, who helped to determine a benefit schedule or a suitable mix of rehabilitative services. Like Progressive reformers before them, postwar liberals believed that a robust and professionalized bureaucracy was the hallmark of a modern state and the best way to avoid the political conflict that surrounded matters of redistribution and race.Footnote 26 To the New Deal generation, Social Security’s Old Age Insurance served as a paragon of administration, where clear, uniform procedures and professional distance circumscribed program discretion. While Disability Insurance was much more problematic, its association with OAI maintained—if not objectivity, precision, and consistency—at least their appearance amid a sprawling bureaucratic apparatus.Footnote 27
Young disabled activists, however, viewed the centralized state, staffed by experts applying uniform rules to reach standard program outcomes, as the very instrument of their oppression. The activists were too disabled for rehabilitation and simply were not ready for the “early retirement” that Social Security’s Disability Insurance offered. Few of them would have qualified for much income under that program anyway because they lacked the extensive employment history required. By emphasizing the inadequacies of people with disabilities as a reason for compensation or as deficits in need of correction, activists argued, disability benefit programs fostered social prejudices against the disabled.Footnote 28
Additionally, activists found VR counselors if not indifferent, then singularly counterproductive to their efforts to create a life for themselves. The overriding goal of vocational rehabilitation was return-to-work, and because resources were limited, counselors frequently turned away applicants with severe impairments, whom they regarded as having little vocational potential. Activists resented being dismissed. Mary Lou Breslin recounted that “perceptions [that people with disabilities could not perform a job] were widespread within the rehab profession as well as among employers.” Footnote 29 Another activist remembered being bluntly told that the “state doesn’t hire blind rehab counselors” when he shared with his counselor his plans to study rehabilitation in college.Footnote 30 Activists who had spent time in residential institutions had particularly harrowing memories of powerlessness. Noting that physical and sexual abuse was common at her facility, Lucy Gwin said of her institutional caregivers, “They could do . . . whatever they wanted to do.”Footnote 31 For people with disabilities politicized by their experiences, the state was, more often than not, a reminder of squelched ambitions and dehumanizing treatment.
In a radical critique of New Deal social policy, disability activists redefined “independence” to forge common ties between groups of the disabled. Postwar liberals had taken for granted that breadwinning was the lynchpin of disability programming, and they endeavored to parse individuals into the diagnostic categories that determined their rehabilitative needs. Activists, however, rejected efforts to proscribe outcomes on individuals with disabilities. Instead, they celebrated self-determination, a concept that came to have many names in disability circles: “normalization” among specialists in developmental disabilities and parent advocates, “self-advocacy” among adults with developmental disabilities, and “independent living” among wheelchair activists.Footnote 32 At its core, self-determination entailed the right of people with disabilities to live in integrated community settings, to form relationships, to pursue a vocation, to make everyday choices such as what to eat and when to sleep, and most important to determine the direction of their lives.Footnote 33 Activists admitted that life outside the protective cocoon of parents and professional caregivers could be challenging, rife with mistakes and disappointments. But they insisted on letting the disabled experience “the dignity of risk” that the nondisabled took for granted. The right to chart one’s life, free of institutional, professional, and parental control, they argued, even if that course included the “possibility of failure,” constituted “true independence and the mark of one’s humanity.”Footnote 34
Though “independence” would later become associated with conservative themes of self-reliance, activists in the 1960s and early 1970s emphasized that independent living entailed neither physical nor economic self-sufficiency.Footnote 35 In fact, activists came to see the overriding emphasis on employment outcomes as contributing to the marginalization of disabled people. While VR counselors viewed the severely disabled as poor candidates for productive work, Ed Roberts insisted that “there are very few people in this society who should be written off.”Footnote 36 According to Roberts, independent living could entail part-time work or no work at all; what mattered was that the individual chose for herself. That independence required substantial societal supports would have been all too clear to the young activists, whose university tuition, room and board, and cadre of personal attendants were made possible through grants from state vocational rehabilitation agencies, county social welfare funds, and federal cash and medical assistance to the disabled.Footnote 37 “Even the most severely and profoundly disabled individual can be independent,” Roberts argued; “they may need all kinds of help—but they can be in control of their lives.”Footnote 38
Congressional liberals found independent living alluring. It converged with both attempts to rehabilitate the poor for the workplace and efforts to extend civil rights protections to the disabled. Rehabilitation legislation in fact became the vehicle for civil rights. In 1972, Senator Hubert Humphrey (D-Minn.) proposed amending the Civil Rights Act of 1964 to include the disabled. With the election of Richard Nixon to the White House having emboldened conservatives, however, civil rights activists and Democratic congressional leaders were hesitant to open the law to reconsideration. Instead, they convinced Humphrey to append his civil rights provisions to the Rehabilitation Act, currently winding its way through Congress. What eventually became Section 504 required federal agencies and federally funded programs to provide job accommodations and accessible facilities to the disabled. Section 504 received little attention during congressional debate because the Rehabilitation Act of 1972 contained much more controversial measures, including funding designated for independent living programs. Underscoring its intention to reorient rehabilitation services toward independence living rather than employment, Congress dropped the term “vocational” from the title of the act. Its bill gave priority for services to severely disabled individuals even if they had little vocational potential, allowed clients of VR to pursue nonvocational goals, and permitted state agencies to spend resources on services that helped the disabled live independently, even if they did not obtain a job. To accomplish these goals, it authorized $1.7 billion for state rehabilitation services over two years. Nixon vetoed the bill, arguing that he would not “waste taxpayers’ dollars” on “activities that have no vocational element.” Congress passed the Rehabilitation Act again in 1973, and Nixon vetoed the bill a second time. Six votes short of overriding the president’s veto in the Senate, congressional Democrats gave up. They stripped the bill of its funding for independent living programs and repassed it as the Rehabilitation Act of 1973, which Nixon finally signed.Footnote 39 Although activists would not secure explicit funding for independent living programs until 1978, Section 504 had become law, and Congress had signaled its enthusiasm for the concept.
The problem for activists, however, was that rehabilitation leaders embraced their own version of independent living. In the early 1960s, seeking to expand their professional scope, they began to promote the teaching of self-care skills to people who otherwise would not have qualified for vocational rehabilitation because they were too old, too young, or too impaired to make promising job candidates.Footnote 40 But the differences between the form of independent living the activists demanded and the kind that federal and state administrators practiced could not have been more profound. Although rehabilitation officials had made limited forays into independent living services, their programs remained fundamentally oriented toward self-reliance, not self-determination. In a planning document, activists at the Berkeley Center for Independent Living criticized state rehabilitation counselors, who considered a disabled individual “trained” once he or she completed a tertiary course of study and, therefore, refused to pay for study beyond a college degree or a vocational education program. What about the person who changed his mind about his vocation or wished to pursue “an alternative lifestyle” rather than just a job, they asked.Footnote 41 Similarly, Mary Lou Breslin and Phil Draper argued to Congress that, even though its state agencies provided clients with social supports, vocational rehabilitation was nothing like self-help. Because of its orientation toward self-sufficiency, they noted, vocational rehabilitation resembled a factory that moved human bodies along an assembly line, churning out workers and discarding bodies that did not fit the constraints of the bureaucratic machinery. By contrast, the social supports around independent living constituted a relationship, much like a marriage, that lasted “from onset of disability until death.”Footnote 42 Juxtaposing the self-help centers to vocational rehabilitation agencies, fellow activist Judy Heumann reiterated, “We have no closure requirements . . . many of our clients will need our services indefinitely.”Footnote 43
In keeping with their claim to self-determination, activists resolved to throw off the control that professionals had over their lives. To articulate this vision of emancipation, they borrowed freely from metaphors gleaned from the capitalist market. Activists were not small-government, free-market conservatives; they could be scathing in their indictment of conventional understandings of productivity and efficiency.Footnote 44 But in the idealized market of voluntary exchanges, they found an idiom of empowerment. While public disability programs authorized professionals to measure, evaluate, judge, and act on behalf of their disabled charges, the market gave individuals the power to effect change through individual action. Fusing Ralph Nadar’s crusade against corporate greed and malfeasance with the distrust of medical authority voiced by the women’s health and patients’ rights movements, activists urged the disabled to see themselves as informed consumers rather than as patients or clients.Footnote 45 As patients, they accepted the admonitions of experts, but as consumers they had the right to choose which services they wanted and to determine how and when to receive them. As clients, they had to take what agencies offered, but as consumers, they could insist that the services they desired, if not currently available, be made so. According to an early description of consumerism, only when “the disabled person . . . shed the patient or client role” and fortified himself with the expectation of choice, could he upend “the dependency-inducing features of the physician-patient or professional-client relationship.”Footnote 46
To these market metaphors, activists added romanticized images of the community. Rather than rely on the professional, activists insisted on the value of advice born of lived experience. Patterning “peer counseling” on the consciousness-raising methods used by early feminist consciousness-raising groups and self-help organizations like Alcoholics Anonymous, activists urged people with disabilities to turn to their fellow disabled “peers” rather than to physicians and disability professionals for help in learning how to live independently.Footnote 47 They also believed in collective self-help and set about founding a network of self-help centers run by people with disabilities for people with disabilities. Ed Roberts captured the resolve when he declared in 1970, “I’m tired of well-meaning non-cripples, with their stereotypes of what I can and cannot do, directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big—cripple power.”Footnote 48
Do-It-Yourself Social Change
Funding for community action through the War on Poverty gave activists the resources they needed to erect an institutional rival to vocational rehabilitation and an organizational base from which to advance disability rights. Throughout the 1960s, self-help, mutual aid, and cooperative living arrangements for polio survivors, injured war veterans, and ex-mental patients sprang up around the nation. On the campus of the University of California at Berkeley, the Rolling Quads, an organization of wheelchair-using students that Ed Roberts founded, put peer counseling and self-help into practice in the dormitories. The students began repairing wheelchairs, teaching one another how to care for themselves in community settings, and assisting with the finding, hiring, and firing of personal attendants. Because these services were not vocational in orientation, state VR agencies did not offer them, but the students saw these services as vital to their ability to live on their own, outside of adult care facilities, following graduation. The Rolling Quads also infused self-help with political action, famously taking sledgehammers to sidewalks in Berkeley to dramatize the need for curb cuts and lobbying the statehouse in Sacramento for funding for personal attendants.Footnote 49 In 1970, using an $80,000 grant from the War on Poverty program, TRIO, Ed Roberts, John Hessler, and Hale Zukas chartered the Physically Disabled Student Program to bring independent living to all Cal students.Footnote 50 Requests for self-care courses and independent living services poured in from individuals around the nation, overwhelming the resources of the small campus group. Two years later, a community-based corollary to the PDSP, the Center for Independent Living, opened its doors to disabled adults in Berkeley. By 1977, the CIL had increased its staff from 11 to 117. Supported by twenty-one contracts and an annual budget of $900,000, it served two thousand people a month in the San Francisco area.Footnote 51
Because it catered to a low-income population, the CIL was limited in what it could charge for its services, and because of Nixon’s veto, it lacked federal funds specifically for independent living. Fundraising, therefore, dominated the agenda of the CIL’s staff and board of directors from the onset. An account of revenues in the late 1970s illustrates the inventive ways activists cobbled together a budget. The center operated with financial support from revenue sharing, the Comprehensive Employment and Training Act (CETA), the Community Development Block Grant (CDBG), and Title XX of the Social Security Act; six grants from U.S. Rehabilitation Services Administration; three grants from the California state vocational rehabilitation office; grants from the Veterans Administration, VISTA, the U.S. Commission on Aging, and the U.S. Community Services Administration (CSA); local and state money; thirteen foundation grants; and a smattering of corporate grants.Footnote 52
A private-sector, nonprofit, community-based organization, the CIL embodied the activists’ suspicion of state power and their embrace of voluntarism and grassroots initiatives. While government programs bent individuals to serve policymakers’ desired ends and divided the disabled along diagnostic lines, the CIL sought to unite them around shared needs and common experiences with prejudice by putting the philosophy of self-help into practice. In contrast to the large centralized programs that epitomized New Deal rationalism, activists embraced the messiness and diversity of local action, solving social problems through “whatever method is appropriate within the context of particular lives and communities,” as one independent living manifesto put it.Footnote 53 According to its authors, independent living rejected the “mythical instant utopias effected by ‘great leaders,’ ‘government,’ and ‘society’” in favor of the “real progress” that occurred through “changes in the daily thoughts and actions of individuals.”Footnote 54 Like other counterculture initiatives of the time—community gardens, urban homesteading, and cooperative living—people with disabilities sought freedom and meaning in the intimacy of face-to-face relationships and hands-on problem solving.Footnote 55
Found in major metropolitan centers and university towns, the centers eschewed professionals, aspiring instead to consumer control and peer counseling. At the Berkeley CIL, for instance, most of the staff, the board of directors, and volunteers were blind or wheelchair users. The CIL offered a menu of services from which the “consumer” could select services designed to meet goals that she had chosen for herself. If she wished, the consumer could seek help from a peer, a person whose lived experience with disability served as all the expertise needed.Footnote 56 Ostensibly, robust roots in the community would allow the center to tailor its programming to the demands of consumers. The CIL, for instance, featured an expansive list of services, including job training, addiction counseling, recreational opportunities, housing referral, wheelchair repair, computer training, college-credit courses, deaf-accessible services, classes on cane walking, and a legal advocacy program that supported both individuals who had experienced discrimination and employers seeking to hire people with disabilities.Footnote 57 Which particular services were offered at any given time depended on surveys of the disabled in Berkeley and, more important, the funding priorities of private foundations and the local, state, and federal governments.Footnote 58
The CIL was one of a number of disability rights and self-help groups that blossomed in Boston, New York, Houston, St. Louis, Denver, and other cities between 1970 and 1974. After the 1978 rehabilitation amendments authorized federal funding for independent living centers, their number exploded, from fifty-two in 1977 to three hundred within a decade.Footnote 59 The Berkeley CIL, however, remained a pioneer. Rather than becoming yet another social service agency, the centers, Roberts hoped, would empower people with disabilities and draw them into politics to demand their rights, much like community action programs did for the urban poor. As a place of volunteerism, employment, and political action, the CIL negated entrenched stereotypes of the disabled as passive, weak, and unproductive.Footnote 60 Roberts also hoped that the self-help centers would facilitate cross-impairment and cross-racial organizing and transcend the boundaries that divided the disabled from one another. The Berkeley activists cultivated the CIL to become a national model for this sort of community building.Footnote 61
Because independent living first took root on college campus, its founders were mostly white and much more educated than the typical person with a disability.Footnote 62 From the earliest days of the Berkeley center, its leaders were determined to diversify the independent living movement and spread the philosophy of self-help and collective action to minorities. During board meetings between 1971 and 1972, they suggested recruiting more “third world people” and committed themselves to an affirmative action policy for hiring, even as debates over racial preferences roiled college campuses.Footnote 63 Roberts recruited Don Galloway, an African American active in both the NAACP and the National Federation of the Blind, to join the board and assist in grant-writing. In 1975, the CIL sought to build a presence in majority-black Oakland, partnering with the Black Panthers to offer independent living services through the Panthers’ neighborhood health clinic.Footnote 64 In its heyday between 1977 and 1980, the CIL offered services that brought the blind, the deaf, wheelchair users, and people with mental impairments together under one roof, and offered counseling in Spanish, Mandarin, Cantonese, and Tagalog, all in an effort to hammer home the imperative of a disability identity that transcended traditional social cleavages.Footnote 65
Activists, moreover, envisioned the centers serving as the sinews linking a nascent disability rights movement together. Traveling frequently to annual conferences of the ACCD and the President’s Committee on Employment of the Handicapped, CIL leaders connected the small and loosely organized grassroots network of self-help centers to an insider circle of rights activists, lawyers, and sympathetic congressional staffers in Washington, D.C.Footnote 66 Judy Heumann embodied the deep ties between the grassroots activists in Berkeley and the supporters of disability rights in the Capitol. In the mid-1970s, she left the CIL to serve as a legislative aide to Senator Harrison Williams (D-N.J.), before joining the ACCD board of directors. In the late 1970s, she returned to the CIL as a director. When the ACCD lost patience with the Carter administration in 1977, Heumann had a hand in both ACCD’s decision to stage protests and in the CIL’s efforts to rally Bay Area people with disabilities and their allies to HEW headquarters.Footnote 67
The Racial Legacy of Independent Living
Nevertheless, despite the parallels they saw between the disabled and minority groups, CIL activists were at a loss as to how to diversify the independent living movement. In 1971, at one of their first planning meetings, leaders brainstormed about groups with which the organization could forge alliances. They listed several disability organizations but did not include any groups representing the poor and nonwhites, not even the NAACP or black churches, a conspicuous omission for activists who had modeled themselves on the African American civil rights movement.Footnote 68 To help, PDSP staff member and community organizer Michael Fuss took it upon himself to map out Berkeley organizations that were politically active in causes relevant to the physically disabled. His list contained several organizations working with the elderly, the poor, and African Americans, but the CIL board never acted on it.Footnote 69 Board members also delayed issuing a formal affirmative action policy, wondering whether their first priority should be to hire and promote from within the organization’s existing (and largely white) ranks. As late as 1978, despite long recognizing a need for increased outreach to Latino and Asian communities, the CIL still lacked permanent Spanish- or Asian-language–speaking staff. That year, only 15 percent of clients served belonged to racial and ethnic minorities. Footnote 70 After the center turned down a Chinese American woman applying for a secretarial position, the San Francisco–based organization Chinese for Affirmative Action (CAA) filed a complaint with HEW, accusing the CIL of discriminating against Asian Americans seeking jobs, leadership opportunities, and services at the center. When HEW asked the CIL to step up its outreach to Asian communities, executive director Phil Draper argued that the center was already in contact with four organizations. The CCA responded by forwarding to Draper a list of nearly ninety local Chinese American organizations, newspapers, and radio stations.Footnote 71 Racial outreach, however, never rose to a high priority in a grassroots organization that was perennially long on need and short on resources. The CIL did not make substantial headway in hiring staff of color until after 1978, when racial diversity was made a condition of a grant it received from the CSA.Footnote 72
The problem, however, was one of more than simply a failure to hire minorities or conduct sufficient outreach in nonwhite, non–English speaking communities. Bay Area residents viewed the CIL as a space for whites and wheelchair users.Footnote 73 While staff made a concerted effort to add services for the deaf and blind, they were ambivalent about whether assertions of racial identity belonged within a movement that coalesced around a disability identity. In 1976, noting how problematic it was that CIL was “white in the black community,” board member and black activist Don Galloway became interested in expanding the number of center materials available in Braille and ensuring that black staff members were promoted to program directors. He took it upon himself to recruit African Americans as drivers, personal attendants, and professional staff and to organize them into a minority caucus “to make sure we get our voice heard.” Galloway called his caucus the Fine, Black, and Intelligent (FBI) and announced its formation in the center newsletter. The FBI, he declared, would not only conduct outreach to nonwhite groups but would also facilitate “ongoing communication with the general CIL staff about issues of racism.” Fellow activists, though, found racial organizing divisive. Despite the fact that announcements for the Disabled Women’s Coalition regularly appeared in the newsletter, Galloway was dismissed from the center’s board and the FBI failed to materialize. The message from his colleagues was clear, Galloway recalled years later: “We are not racist, [but] we do not think we need to change our system to accommodate any particular group . . . we were all one.”Footnote 74 Discomfort over assertions of racial solidarity were not confined to the CIL. Several years later, while serving as a board member of the National Council on Independent Living, the primary lobbying organization for disability self-help centers, Galloway again tried to organize a minority caucus to address the paucity of centers in communities of color and the lack of racial minorities in positions of leadership. Again, he faced resistance from a majority white board, which worried that competing claims of racial justice would, as he put it, “splinter” and “weaken” the disability movement.Footnote 75
Galloway’s efforts to organize people of color within the independent living movement and the CAA’s complaints against the CIL were attempts by people of color to shape whose encounters with oppression became the defining narrative of disability rights. Reflecting on his experiences organizing the disabled in Boston during the 1970s, Fred Fay explained that whites and racial minorities often did not share the same experiences of exclusion. The accessibility barriers that whites faced were compounded for African Americans by a lack of public transportation routes in low-income areas, racially segregated and dilapidated housing, and the material want of poverty. In addition, Fay found some of his fellow white disability activists reluctant to enter black neighborhoods to organize the African American disabled.Footnote 76 The mantra of consumer control and self-help did little to clarify how movement activists and center directors should handle racial antagonisms, instead pushing these questions into local arenas. Johnnie Lacy, a community organizer and black activist, noted that whether a center addressed the needs of people of color and the poor depended a great deal on who sat in positions of leadership. Pointing to her own experiences directing the self-help center in Alameda County, California, Lacy said, “I always felt that the board had to first identify those communities” it served before deciding its mission.Footnote 77
At the same time that activists wrestled with incorporating racial difference into the day-to-day operations of independent living centers, an increasingly ominous political environment complicated their efforts to build a movement that spoke to the needs and experiences of all people with disabilities. In 1974, the United States slid into a prolonged recession marked by high inflation and unemployment. Though the downturn ended in 1975, low growth persisted into the early 1980s, bringing the post–World War II economic expansion to an end. From New York to Philadelphia, Seattle to San Francisco, unionized public-sector workers went on strike demanding wage increases to keep up with rising inflation.Footnote 78 Meanwhile, a revolt among taxpayers erupted in California with the passage of Proposition 13 in 1978. The ballot initiative not only galvanized conservatives of the New Right but, by capping property taxes, robbed local governments of revenue and set nonprofits in competition with one another for what resources remained.Footnote 79 Governments at all levels entered a period of fiscal austerity that had a profound effect on independent living centers, which relied heavily on grants from the public sector. At the CIL, staff prepared to close programs and lay off personnel, a wrenching choice given that so many of the employees were low-income and the center was under pressure from HEW to hire minority staff.Footnote 80 Even though Congress authorized funding for independent living as part of the 1978 rehabilitation amendments, it appropriated only $10 million, a small fraction of $80 million lawmakers had imagined spending with the Rehabilitation Act of 1973 before Nixon vetoed the bill.Footnote 81
What public grant money was available was aimed at developing self-sufficiency rather than self-determination. Enacted in 1973, CETA gave grants to state and local governments to provide training and jobs to low-income people in the public and nonprofit sector. The following year, President Gerald Ford signed the CDBG and Title XX into law, both of which had the express purpose of promoting “economic self-sufficiency,” preventing “dependency,” and fostering community-based and home-based care.Footnote 82 Activists had envisioned their centers offering community-determined services, including leisure and recreation activities, mental and sexual wellness courses for the disabled, and political advocacy, but what federal officials would pay for was economic independence. They soon fretted over the extent to which their organizations had become trapped in “a state of dependence on establishment funding.”Footnote 83
Concerns about dependency were not confined to the centers. Activists also worried that social policy encouraged “dependency” among individuals with disabilities. Between 1968 and 1972, Congress debated the Nixon administration’s proposed Family Assistance Plan (FAP). The plan would have set an income floor below which no impoverished family would fall below, irrespective of the marital or work status of the parents; SSI would do the same for adult individuals who were poor.Footnote 84 Dominated by Southern conservatives and its powerful chair, Russell Long, the Senate Finance Committee was determined to rein in welfare spending and compel welfare mothers to work. The committee balked at the FAP, but Long pushed SSI through, noting that “there was not much abuse” of welfare among the aged and disabled.Footnote 85 On the one hand, SSI was a boon to independent living. So long as centers kept salaries below poverty level, their disabled employees qualified for SSI and, in California, Medicaid benefits to pay for the costs of personal attendants. The CIL pursued this strategy in order to stretch its payroll to cover as many disabled employees as possible and reserve grant funding for its social-service programs.Footnote 86 On the other hand, SSI also constrained self-determination. SSI recipients who worked could not move to higher-paying jobs or accrue savings in pursuit of long-term goals, such as a house or a small business, lest they lose Medicaid eligibility and, with it, the supports that made employment possible in the first place.Footnote 87
The conundrum led disability activists to focus their advocacy on the “perverse” incentives of welfare. “The SSI program unequivocally prohibits severely disabled people from seeking employment,” declared a CIL internal planning document.Footnote 88 The condemnations of work disincentives in SSI anticipated arguments that conservatives would launch in the 1980s against most forms of assistance to the poor, particularly Aid to Families with Dependent Children.Footnote 89 CIL activists, however, wanted SSI to become more, not less, generous. They recommended making the disabled presumptively eligible for disability benefits, exempting nearly $200 of a recipient’s quarterly earned income and 20 percent of unearned income, and capping a recipient’s out-of-pocket work, health care, and attendant care expenses.Footnote 90
In the late 1970s, the emphasis on facilitating the entry of the disabled into the workplace set independent living activists apart from both President Jimmy Carter and civil rights and welfare-rights organizations. The president’s welfare reform initiative, the Program for Better Jobs and Income (PBJI), consolidated the aged, disabled, and mothers of young children into one cash-assistance program that guaranteed a minimum income. In addition to an income floor, parents in two-parent households, single mothers with teenage children, single persons, and childless couples were required to find full-time work or accept a public-sector job or training position. PBJI did little to address disabled activists’ arguments that they needed earnings exemptions and attendant care to bridge the chasm between welfare and the workplace. The disability rights critique, however, struck a discordant note with the National Urban League. Reading work requirements as racially coded appeals to whites, the league urged Carter to treat all low-income citizens alike by providing a minimum income irrespective of whether they held jobs.Footnote 91 The positions of independent living, civil rights, and welfare rights activists were not necessarily incompatible; they all sought adequate resources that would allow the poor to choose for themselves how to live their lives, including deciding for themselves whether to work. But the distinction between incomes insufficient for self-determination and incomes so liberal that they dampened an individual’s desire for employment was a difficult one to make in the increasingly polarized political debates over welfare.
Despite activists’ efforts to unify the disabled, fissures emerged as the New Right became ascendant in the late 1970s, culminating in the election of Ronald Reagan as president in 1980. In a hearing before Congress in 1978, Ed Roberts warned that SSI discouraged work because its ceiling on earnings was low, and it did not cover the costs of attendant care. He was careful to underscore the importance of SSI and Disability Insurance to the ability of people with disabilities to live independently. Other witnesses, however, saw SSI as too generous. At the same hearing, a Texas rehabilitation official complained that “if you draw $1 in SSI benefits, you are eligible for literally thousands of dollars in fringe benefits . . . through the welfare department. . . . That is an encouragement not to work.”Footnote 92 The balanced tipped toward antiwelfare rhetoric with the election of Reagan. In his first budget, Reagan proposed reducing spending on social services, converting Medicaid into a block grant, and tightening eligibility for SSI and Disability Insurance. With federal support for the disabled embattled on many fronts, the ACCD sounded the alarm. Warning that the cuts would “result in utter disaster for disabled children and adults,” the ACCD pleaded with its members to “speak with one clear voice” or else “many of us will revert to the status of dependency and second-class citizenship of thirty years ago.”Footnote 93 At the same time, criticism of income-support programs intensified in some quarters of disability activism. In a manifesto on independent living published in 1982, Justin Dart, Reagan’s director of rehabilitation services and later a tireless champion for the ADA, denounced federal disability benefits as “involving massive, inefficient subsidies, which support large segments of the population in relatively idle dependency.”Footnote 94 The “one clear voice” the ACCD sought was fractured.
Conclusion
The ambivalence that disability activists voiced toward prevailing federal policy toward the disabled reflected a larger societal interrogation of the New Deal during the 1970s. Scholars have puzzled over this period, characterizing it as both one in which Americans rejected decades-old racial and gender hierarchies but also came to see the capitalist market rather than the state as the solution to most social problems.Footnote 95 Although Thomas Borstelmann suggests that only in the wake of “a purified version of individualism and consumer capitalism, one in which all were welcome as buyers and sellers” could egalitarianism advance, King and Smith characterize the period as an “anti-transformative” one. Supporters of egalitarianism remained divided and could not overcome resistance from adherents of white dominance, who exchanged overly racist rhetoric for indirect or racially coded appeals to white interests.Footnote 96
Thinking of disability activists as embedded within these two contending racial orders helps us understand the roots of the contemporary antagonism between social justice demands for recognition of identity, on the one hand, and redistribution of wealth, on the other hand.Footnote 97 As the story of independent living illustrates, moments of racial cooperation, such as the Section 504 protests against HEW, could and did exist alongside ideological and institutional forces that kept the two movements distinct. Though independent living celebrated grassroots community and consumer control, the experiences of activists of color suggest that maintaining “community” among the disabled could also suppress discordant voices. Activists could not resolve how to forge a common identity among the disabled that also accommodated differences in how the disabled experienced oppression, differences that were informed by race and poverty. Moreover, the fact that the self-help centers relied so heavily on government grants, much of it aimed at increasing employment among the poor, confounded attempts to promote self-determination and unity among people with disabilities. By the end of the 1970s, the crumbling of the New Deal order failed to fully sweep away the hierarchy at the heart of the breadwinning welfare state, leaving in place the foundation for a much subtler reconstitution of racial and disability-based inequalities.
