A Disability History of the United States

by Kim E. Nielsen

  The UHF did not hesitate to point out the occasional political condescension directed at people with disabilities. In early 1975, when it looked as though the state legislature was going to pass legislation giving free license plates to paraplegics but allow insurance companies to deny health coverage to people with disabilities, the UHF pointed out the irony. “The bill dealing with license plates for paraplegics . . . is probably the most meaningless piece of legislation I have ever been acquainted with,” wrote Bjerkesett, while, “the lack of insurance coverage will, often times, severely affect one’s ability to become independent in the community and also has serious effects on one’s ability to maintain gainful employment.” Free license plates were not the goal of the UHF.33

  Like many other groups across the nation, the UHF focused on the accessibility of public buildings and transportation. In 1975 the organization began making the case that the famed Minneapolis Orchestra Hall be made accessible as it went through a planned renovation. UHF leaders submitted a list of building barriers and asked to meet with the building’s leaders. “Now is the time,” Benson wrote, “for you to listen to those most affected by the problems of inaccessibility.” Not getting the answer they wanted, the UHF protested repeatedly outside the building—collecting over nine hundred signatures of support at an event in July. The “handicapped,” they pointed out, were being “denied Mozart.” Building smart alliances, the UHF succeeded in getting resolutions of support from the Minneapolis City Council, the Minneapolis Mayor’s Advisory Committee on the Handicapped, and the St. Paul Mayor’s Advisory Committee on the Handicapped. Similarly, the UHF protested its members’ lack of access to the Minneapolis skyways that connected buildings and made wintertime shopping easier. At a wintertime rally sponsored by the UHF, Benson asked, “Are we going to allow these people to keep sixteen and a half percent of the population oppressed? Are we going to remain invisible? Are we going to allow them to deny us the usability of Minneapolis?”34

  Like activist groups in Denver, San Francisco, New York, and other cities across the nation, the UHF also sought access to public transportation. After several years of requests and then protests that shut down city streets, the UHF sued the Metropolitan Transit Commission of Minneapolis/St. Paul and its chairperson Doug Kelm. In an early 1976 press release, the UHF firmly positioned itself in the tradition of rights: “The right to travel and move about in this country is as fundamental as the right to life, liberty and the pursuit of happiness,” the UHF proclaimed. Despite Section 504 of the 1973 Rehabilitation Act, the MTC had recently purchased an additional 338 inaccessible buses. By so doing, Kelm was “denying the rights and freedoms guaranteed to the handicapped people by the US Constitution.” By 1989 ADAPT, a national disability-rights organization, ranked the MTC as one of the ten worst large-city transit systems in the country.35

  The Minnesota UHF reflected and intersected with national trends in many ways. In 1976 the UHF office first received TTY technology, which made telephones accessible for deaf people; the affordability and national availability of TTY was made possible by deaf activists. Like other national and regional disability-rights groups, the UHF found financial and institutional support from religious organizations (both Catholic and Lutheran) and unions. For example, in the middle of the transit lawsuit, a local of the Minnesota Teamsters Public Employees Union donated money for legal fees.36

  Also like other disability activist organizations across the nation, the UHF increasingly sought to welcome and advocate for people with a wide range of disabilities—physical, sensory, cognitive, and psychiatric. In 1977 the AFL-CIO contacted the Twin Cities UHF and the Minnesota Association of Retarded Citizens (MARC) as part of a larger discussion about organizing disabled laborers in sheltered workshops. The concept of sheltered workshops—employing people with disabilities separately from other workers—dates to the nineteenth century. By the 1970s, sheltered workshops provided employment to people with disabilities—but at dismally low wages, basically exempt from labor law, with few benefits, and with virtually no possibility of advancement or additional training. Built into them was the assumption that people with disabilities could not survive in the outside world and needed a special, protected, environment. By the time it contacted the UHF, the AFL-CIO had successfully unionized workers at a sheltered workshop in Clinton, Iowa. In 1979 the National Labor Relations Board would rule that sheltered-workshop employees must be allowed the opportunity to unionize if they so desired. What became of the Minnesota effort is unclear, but it prompted discussions about welcoming those with cognitive disabilities into the disability activist community.37

  Just as the Section 504 protesters in San Francisco and those across the country drew connections between racial, sex, and (sometimes) sexuality discrimination, and created alliances, so did those emerging disability activists in Minnesota. In the Progress, the UHF’s newsletter, UHF member Scott Rostron wrote in a 1977 column, “Equality is coming to the handicapped communities slowly, as it has for the black, women, elderly, and other sub-cultures in America today . . . It is time that we move from the special needs category to the people category. From segregation to integration. Identify to ourselves and to others our true needs . . . The point is the handicapped, black and elderly all need as people . . . It is more than the rights of the handicapped, it is the rights of the people, equal people.”38

  In 1978 events highlighted the intersections between systems of oppression. After a UHF member was raped in her apartment, she utilized the resources of the UHF in reaching out to advocates and other rape victims, thus bringing the emerging feminist and disability rights movements together. In its attempt to learn more about people with disabilities and sexual assault, the UHF concluded that “sexual and physical assault of the handicapped is a real problem and probably bigger than anyone knows.” Other victims shared their stories, and community law enforcement provided information about the sexual assault of blind, mobility impaired, and cognitively disabled women. UHF members learned that rape support services were generally inaccessible to women with disabilities: architectural barriers, inaccessible transportation, a lack of TTY and ASL interpreters, and few Braille resources existed. An emerging coalition of police, feminist activists, disability activists, county attorneys, and social workers participating in a July 1979 conference uncovered some sixty cases of sexual assault against local women with a wide variety of disabilities in just the previous one-year period. As one community antiviolence activist wrote to the UHF, there was a “lack of services and facilities for physically handicapped or disabled sexual assault victims. The time has come for us to share our expertise in our respective fields in order to develop accessible, effective services to disabled sexual assault victims.”39

  The barriers were not merely physical. As conference activists pointed out, many assault victims “experienced the barrier of community disbelief,” “stereotypes that make it hard for the average person to accept the fact or even imagine that handicapped people are raped and beaten.” An additional barrier was that 1970s Minnesota law, like that of many states, required that victims bringing rape charges prove the use of “legal force” in resisting their assault. While there are many reasons that a woman would not physically resist sexual assault, for some disabled rape survivors, doing so was physically impossible. In such cases, even if the assault was reported and the rapist caught, prosecutors had to free the perpetrator. When the sexual assault law was finally changed in 1982, the UHF was recognized as both a sponsor of and impetus for the legislative amendment.40

  The UHF disbanded in the mid-1990s. It had, however, accomplished a tremendous amount. In 1975 Minnesota citizen Curtis Mohn had written to the Minneapolis Star protesting the use of the word “cripple.” To him, the word had connotations of “uselessness, ugliness and helplessness.” “I am,” he insisted, “far from that, as any other handicapped individual is. We are strong of heart, mind and soul.” Most importantly, he went on, “there are over ten million physi
cally handicapped people in the US. We have strength; we have numbers; we have friends, relatives, and concerned citizens on our side. We must use that strength.”41

  It is not known if Mohn affiliated with the UHF. It is clear, however, that through organizations such as the UHF, and because of organizations such as the UHF, people with disabilities used the strength they had. And likely, and perhaps unexpectedly, Minnesota citizens with disabilities discovered that they had far more strength than they thought they did, like many others across the nation. Through collective work, people with disabilities and their allies created community, asserted influence, claimed power, and shaped policy in such a way that enhanced both their lives and the lives of many others.

  DISABILITY PRIDE

  Disability activism, community, and empowerment grew as people with disabilities increasingly insisted on having a voice in shaping their own lives, the policies that affected them, and the institutions in which they lived, worked, and learned. In 1988 deaf students at Gallaudet University staged a successful protest that enabled a deaf person to serve as the university’s president. For several days students engaged in civil disobedience in what has become known as the Deaf President Now (DPN) campaign—until Gallaudet’s board of trustees named I. King Jordan the university’s first deaf president.42

  Disability culture flourished. Building on the works of earlier generations, poets, visual artists, novelists, playwrights, and scholars forced a redefinition of culture and created new spaces of welcome and community. In The Disability Rag, for example, one of only several disability activist and cultural magazines, those who created art found places of expression. Performance artists such as Neil Marcus, whose poem prefaces this book, questioned the medicalization of disability and challenged ableist assumptions. Deaf poets used American Sign Language and forced a redefinition of poetry. In the 1970s, 1980s, and 1990s Paralympian competitors similarly pushed for a reconsideration of what it meant to be an athlete. Dance and theater troupes that included or were limited to people with disabilities prompted those in their audiences to ponder alternate ideas of beauty, sensuality, and movement. Marilyn Hamilton nearly single-handedly transformed wheelchair design when she founded Quickie, creating lightweight wheelchairs (rather than the sixty-pound megaliths originally made available to her after a hang-gliding accident) with personality that served the needs of athletes as well as ordinary consumers (or at least those who could afford them or had the requisite insurance coverage).43

  The contemporaneous landmark court decisions that expanded civil rights for many population groups, the growing advocacy and discontent of people with disabilities and their allies, and a series of legislative victories expanded the scope and successes of the disability rights movement. The growing cross-disability community both made possible and was a result of the increasingly confident disability-rights movement and disability community. People with disabilities increasingly thought of themselves as having a shared experience and common goals—regardless of variations in their physical, mental, or cognitive disabilities, and regardless of their race, class, sexual, and gender differences.

  The Americans with Disabilities Act (ADA) of 1990 is the best-known civil rights legislation for those with disabilities—impacting an estimated 43 million people at the time of its passage. The ADA built on the Architectural Barriers Act of 1968, the Rehabilitation Act of 1973, and the Individuals with Disabilities Education Act of 1975. It also built on the 1964 Civil Rights Act, which banned discrimination based on sex and race in employment and public places. Most importantly, the ADA built on centuries of activism on the part of people with disabilities, and centuries of public debate over rights, citizenship, and engagement in civic life.

  When the ADA was first introduced in Congress in 1988, people with disabilities, advocates, and family members from all over the country shared their stories of discrimination, harassment, and inaccessibility. They also shared their dreams of what a truly accessible democracy could mean. Those with HIV/AIDS shared their stories of how homophobia and ableism often combined in fiercely destructive ways. The ADA’s eventual passage required tremendous labor and sacrifice, from activists such as Justin Dart and Evan Kemp of the George H. W. Bush administration, as well as from street-level activists and protesters. The ADA prohibits employment, access, housing, and educational discrimination against people with disabilities.44

  It would be easy to conclude A Disability History of the United States with a victorious and culminating celebration of the 1990 Americans with Disabilities Act. The story of the ADA can be told in many ways—as a story of disability, as a story of civil rights, as a story of activism. It would not exist without the activism of people with disabilities. Nor, however, would the ADA exist without the nation’s long history of debate over the very notion of rights.

  As federal law, the ADA has made and continues to make a tremendous difference in the daily lives of people with disabilities, their allies, and their families. The inclusion of people with disabilities into higher education, employment, popular culture, and all venues of public life has enriched society greatly. The reality of the ADA, however, is that like nearly all civil rights legislation, it has been consistently tested and eroded in the courts, and sometimes ignored in practice. In 2008 Congress passed the ADA Amendments Act, in an effort to redress decisions made by state courts and Supreme Court decisions that limited the ADA’s breadth. What power the ADA has retained is only due to the constant vigilance and activism of disabled people and their allies—activism that the disability rights movement has made possible.

  DISABILITY HISTORY AND THE ACT OF RECLAMATION

  A Disability History of the United States began with the argument that disability history is at the core of the American story. My hope is that by looking at US history through the lens of disability, we discover an American past both radically transformed and profoundly familiar. The experience of people with disabilities is pivotal to US history, just as the concept of disability is at the core of American citizenship, contested explorations of rights, racial and gender hierarchies, concepts of sexual deviance, economic inequalities, and the process of industrialization. There is no question that the power to define bodies as disabled has given justification, throughout US history, for subjugation and oppression.

  US disability history is not only the history of people with disabilities. Whether one’s life is shaped by able-bodiedness and the economic and legal advantages that issue from that, or by the economic and legal implications of disability’s long-stigmatized past, disability, both as lived reality and as concept, impacts us all.

  United States disability history is a complicated and contradictory story, like the entirety of United States history. It is a story of land and bodies stolen. It is a story of rights and wrongs, of devastation and ruin, of defeat and stubborn persistence, of beauty and grace, of tragedy and sadness, of transformative ideals, and of the reinvention of self. It is, to borrow the words of white, disabled, queer writer and activist Eli Clare, “bold, brash stories about reclaiming our bodies and changing the world.”45

  US disability history has frequently been a story of stigma and of pride denied—particularly when ableism defines disability and people with disabilities as defective and inadequate, and when disability is used to create and justify hierarchies. Ableist ideologies make pride difficult for disabled people. And as Clare has written, “Pride is not an inessential thing. Without pride, disabled people are much more likely to accept unquestioningly the daily material condition of ableism: unemployment, poverty, segregated and substandard education, years spent locked up in nursing homes, violence perpetrated by caregivers, lack of access. Without pride, individual and collective resistance to oppression becomes nearly impossible. But disability pride is not an easy thing to come by. Disability has been soaked in shame, dressed in silence, rooted in isolation.”46 Such shame, silence, and isolation have been built into the institutions, the laws, the perceived and unperceived el
ements of US history. It permeates our lives.

  The most important, repeated, and consequential part of the story of people with disabilities in the United States has been the effort to re-create and reclaim the body—the personal body, the “stolen body” (to once again borrow words from Eli Clare), the national body, and the civic body—as one’s home. As Neil Marcus writes in the poem that begins this book, “In my life’s journey / I am making myself / At home in my country.”

  The story of the US nation is a contested, sometimes vicious, sometimes gloriously marvelous story of creating a national home. People with disabilities have been and will continue to be an integral part of that story. It is my home, our home, and your home.

  EPILOGUE

  When I was four or five, every week for almost a year, apparently twice a week at the beginning, one of my parents drove me from a small town in a very rural part of Montana to the sophisticated metropolis of Great Falls. I remember this trip as a trek, but today my computer tells me that the journey was only around forty miles. My memories of this experience are vague, but overwhelmingly are those of feeling cared for and loved: time alone with a parent, a happy room with brightly colored toys, a cheerful lady who played games with me, and beanbags that I attempted to throw at a wooden target with circles cut into it. The delight of throwing beanbags is such a vivid part of the fuzzy memory that by doing so I must have been violating a rule at home that forbade throwing things inside buildings.

  It was not until I had been doing disability history for several years that it dawned on me that my memories were of attending an Easter Seals facility for speech therapy. All along, of course, I knew that I had gone through speech therapy. I had never, however, considered myself an Easter Seals kid. Naively young, I slid in, and then slid out of the disability category—never being quite old enough even to know it.