A Disability History of the United States (24 page)

In the summer of 1970, Robert Payne went to jail with three of his buddies—all four of them disabled coal miners and members of the Disabled Miners and Widows of Southern West Virginia. Payne had been found guilty of contempt of court while leading a wildcat strike involving as many as forty thousand coal miners across West Virginia, Kentucky, Ohio, Tennessee, and Indiana. Later he said of his fourteen days in prison, “It didn’t scare me and I’m still not scared, because I’m fighting for a cause.” He and his fellow disabled miners, he proclaimed proudly, “don’t intend to be mistreated or discriminated against.”
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Described in the local newspaper as a “soft-spoken Negro,” Payne went to work in the mines as a member of the United Mine Workers of America when he was fifteen years old. “I believe in the union,” he said. “I was born a union man ’cause my daddy was a union man.” In 1967 he had been burned seriously in a mine explosion and was unable to mine any longer; and like so many other coal miners, so many that it was unremarked upon, he had lost several fingers. He and his wife, Dorothy, had three children. Payne, who also had a reputation as a dynamic preacher, lived with his family in a “modest but comfortable frame house” just sixteen steps away from Route 10, in the unincorporated small town of Itmann, near Beckley, West Virginia. The Itmann mine had been opened in 1918 by the Pocahontas Fuel Company and was one of the most productive in West Virginia in the 1950s and 1960s.
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Coal mining in West Virginia, like elsewhere in the United States, was incredibly hazardous. During World War I, more miners died in southern West Virginia than did US soldiers in Europe. While finding reliable disability statistics is difficult, the rate of serious injury among miners was at least eight times higher than the death rate. On top of that, exposure to coal dust caused black lung disease; coal miners were not fooled by the reassurances of company doctors who told them that coal dust promoted health. When UMWA president John L. Lewis negotiated the industry-financed and union-controlled Welfare and Retirement Fund that included disability benefits and health care in the 1950s, the measure had the potential to change lives. It did transform lives—particularly for the estimated fifty thousand disabled coal miners who were “bedridden or housebound” in 1945, and the thousands who came after them, like Robert Payne.
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Under the corrupt leadership of W. A. “Tony” Boyle in the early 1960s, the assets of the UMWA fund fell and the fund’s trustees eliminated benefits to some disabled miners and widows. By 1964, 17.7 percent of the fund’s beneficiaries had lost their benefits. In 1967 Payne and others formed the Disabled Miners and Widows of Southern West Virginia in protest and began to file lawsuits against the UMWA fund and West Virginia’s workers’ compensation system. Receiving little assistance or response from the UMWA, they organized rallies and rolling wildcat strikes in the summer of 1967. As one disabled miner put it, “Boys, we’ve been forced to beg for the crumbs off the table that we built.”
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From the sparse evidence available, it appears that members of the Disabled Miners and Widows were disproportionately African American and female.

Then a perfect storm of events focused national attention on West Virginia. In 1968 seventy-eight miners died at a mine explosion in Farmington, West Virginia; nineteen of the bodies were never recovered. Galvanized by the disaster, regional doctors frustrated by the mining companies’ long medical coverup and denial of black lung disease began to bring information about black lung directly to the miners, in union halls, small-town living rooms, wherever they could. The Black Lung Association (BLA), a group of miners, medical practitioners, and mining family members, organized on behalf of a black lung compensation bill. As the UMWA and mine managers wavered, in 1969 the BLA held massive rallies in Charleston and shut down mines across the state. Around this time, Joseph “Jock” Yablonski ran against Boyle for the presidency of the UMWA, seeking democratization of the union and an end to corruption. Miners were horrified when Yablonski and his wife and daughter were shot in their beds on New Year’s Eve 1969, and even more horrified when the courts determined that Boyle had hired the shooters.

Angered, saddened, and demanding change, miners attending Yablonski’s funeral founded Miners for Democracy. This group, together with the Disabled Miners and Widows and the Black Lung Association, led the effort to reform the UMWA. In 1972 Arnold Miller, a miner disabled by black lung disease and an activist in the black lung insurgency, was named president of the union.

The story of Robert Payne and the Disabled Miners and Widows is a story of class, labor, race, and place; it is also the story of the social reform movement that culminated in President Lyndon B. Johnson’s Great Society; and it is the story of mining-community women who sought political and economic changes in order to protect themselves and their loved ones. It is also a story of disability. As Payne put it, “My union has turned its back on the rank and file miner and those men crippled underground.”
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The reform efforts of disabled miners propelled other miners to activism. During the five-week strike of 1970, while more than twenty-five thousand workers adhered to the picket lines, UMWA “henchmen physically abused the disabled miners and their wives.” A plot to murder Payne and other DMWA members was uncovered. During the strike, “working miners were appalled at the sight of UMWA officials crashing through picket lines of wheelchair bound miners and old women.” Jack Smith was among those protesting union policies during this period. Both of his legs had been crushed when a mine roof caved in. It took eighteen years for him to receive workers’ compensation. Able-bodied miners joined the strike, knowing their risk of being injured in an industrial accident or developing lung disease as a result of a nearly daily intake of coal dust.
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Like people with disabilities before them, Payne, Smith, and other members of the Disabled Miners and Widows proclaimed themselves worthy citizens. Using terms such as “rights” and “discrimination,” and employing the protest methods of the antiwar and racial freedom movements, people with disabilities increasingly, in the late twentieth century, demanded the opportunities and protections of full citizenship. These demands came from both activists and advocacy organizations and ordinary citizens. People with disabilities wanted a better life—and felt themselves deserving of it.

The disability rights movement was energized by, overlapping with, and similar to other civil rights movements across the nation, as people with disabilities experienced the 1960s and 1970s as a time of excitement, organizational strength, and identity exploration. Like feminists, African Americans, and gay and lesbian activists, people with disabilities insisted that their bodies did not render them defective. Indeed, their bodies could even be sources of political, sexual, and artistic strength.

In August of 1990, less than one month after the passage of the groundbreaking civil rights legislation the Americans with Disabilities Act, a local reporter from Frederick, Maryland, sat down to interview Clara Clow. Clow had moved to Frederick in 1956, with her then new husband, after attending Hunter College. Her early adult years were spent raising three children. She embraced feminism in the 1960s, but because she was busy parenting she remained “on the sidelines applauding and rooting.”
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Clow became active in the public arena in the early 1970s. Having had polio at the age of two, she was long accustomed to using a wheelchair. When she heard of government hearings about possible discrimination against people with disabilities, she attended. The people who spoke at the hearing amazed her. “They so inspired me,” she said. “I joined the movement immediately. The ’70s were exciting for the disabled.” In 1973 she began to fight locally for accessible public spaces and in 1976 she and her husband helped to organize the Disabled Citizens of Frederick County United. “Our main focus is architectural and attitudinal barriers,” she explained. “In the beginning, people really did think we were outrageous. It’s been kind of a long fight.”
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“I guess I’m an activist,” she concluded. “I think it’s just caring.”
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The activists of the disability rights movement that so inspired Clow sought to extend the full exercise of citizenship, democracy, and self-determination to people with disabilities. The movement focused on legal efforts to prohibit discrimination in employment and education, access to public spaces and public transportation, and on institutional transformations that better enabled the self-determination of those with disabilities. Like the movements for women’s rights, lesbian, gay, bisexual, and transgender rights, the environment, and racial freedom, the disability rights movement began to coalesce into one movement in the late 1960s and 1970s, from previously disparate elements. Groups of disabled veterans, parents, blind people, deaf people, and other physically disabled persons had sought to shape their own lives in the decades leading up to the disability rights movement.
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Movement participants argued that disability was not simply a medical, biologically based condition. Indeed, the movement sometimes directly challenged medical authority to define “disability.” Using the work of activists and intellectual theorists such as Erving Goffman, Jacobus tenBroek, and Irving Kenneth Zola, advocates argued that disability is a social condition of discrimination and unmerited stigma, which needlessly harms and restricts the lives of those with disabilities and results in economic disparities, social isolation, and oppression.

Just as the civil rights movement critiqued hierarchy based on racial differences, and just as the feminist movement critiqued hierarchy based on sex and gender differences, the disability rights movement critiqued hierarchy based on the physical, sensory, and mental differences of disability.

A vital element of the early activist wave that came to call itself the disability rights movement was the independent-living movement. Grounded in several decades of activism, the movement centered on the counterculture of the University of California, Berkeley, in the 1960s and 1970s. In 1962, the same academic year in which African American James Meredith matriculated at the University of Mississippi after suing for access and racial integration, a polio survivor named Edward Roberts sued UC Berkeley for access and integration. Roberts was no newcomer to discrimination, or to resistance. His high school principal had initially refused to let the young white man, who used a wheelchair and an iron lung, graduate, because he had not completed his gym requirement. The California Department of Rehabilitation had initially refused him financial aid for college, because it determined him unemployable. (Roberts became director of the California Department of Rehabilitation in 1975, in a lovely historical twist.) Eventually Roberts’s suit was successful, but Berkeley required him to live in the school’s infirmary rather than in a dormitory. Within a year other physically disabled students, energized by news of Roberts’s admittance, joined him in the Berkeley infirmary. The third floor of the infirmary soon became the emotional and activist center of the “Rolling Quads,” a disability pride and activist group with Roberts at its center, and the Disabled Students’ Program (DSP), which provided support such as personal care attendants. The group sought barrier-free access to the community and to the university.
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Battling paternalistic assumptions about disability, Roberts and others across the nation developed independent-living centers organized on the principle of self-determination, consumer control, and deinstitutionalization. In the 1970s and 1980s independent-living activists sought the removal of both the architectural and transportation barriers that made civic participation almost impossible for people with disabilities. They worked toward and created institutional supports and accommodations that would enable people with disabilities to live independently, manage their own lives, and make their own decisions. Services ranged from wheelchair repair, attendant care services, peer counseling, legal assistance, adaptive equipment, and training in self-advocacy to providing safe community spaces in which people could openly discuss their families, their sex lives, clothing adaptations, and dreams.

Independent-living centers flourished. As Judy Huemann, eventual director of Berkeley’s Center for Independent Living, explained, “When we go into most ‘establishment’ organizations, we hardly meet any disabled individuals; there are no peers that we can look up to.”
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Across the country, in cities such as Boston, New York, Chicago, and even in smaller urban centers like Green Bay, Wisconsin, people with disabilities found peers from whom they could learn. Many with access to the movement found the resulting peer support and independence thrilling.

One reality of deinstitutionalization was that neither the federal government, states, or cities developed enough structures to provide sufficient support for those people who needed it in order to live on their own—even when doing so was far cheaper than institutional living. In the 1970s state-run psychiatric facilities began to release long-term residents to their home communities as a result of media exposés, lawsuits, activism, and legislation. From 1965 to 1980 the number of people institutionalized in public asylums fell by 60 percent: from 475,000 to 138,000. And, as historian Gerald Grob has noted, whereas “before 1965 many patients spend years, if not decades, in asylums, after 1970 length-of-stays began to be measured in days or weeks.”
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The lucky, the privileged, and sometimes those with successful advocate families found support in independent-living centers, community-based mental health centers, or in community-based group homes. The remaining ended up homeless and living on the streets; and even more found themselves in jails and prisons. Incarceration has since become the dominant method of “care” and institutionalization for poor people perceived to have mental or psychiatric disabilities. A 2006 Bureau of Justice Statistics study reported that more than half of all prison and jail inmates had a mental health problem. In that same year, Human Rights Watch estimated that the number of prisoners considered to have mental health diagnoses was close to 1.25 million. As historian Michael Rembis notes, that is “twice the number of mad citizens incarcerated in state hospitals during the peak years of ‘institutionalization’ in the mid-1950s.” The vast majority of those incarcerated are poor and people of color. Deinstitutionalization has not accomplished all that many hoped for it; nor has it been supported by the means necessary for it to succeed.
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