A Disability History of the United States (27 page)

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.
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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wheelchair design when she founded Quickie, creating lightweight wheelchairs (rather than the sixty-pound megaliths originally made available to her after a hang-gliding accident) with personality that served the needs of athletes as well as ordinary consumers (or at least those who could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).
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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.
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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.

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.”
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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.”
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Such shame, silence, and isolation have been built into the institutions, the laws, the perceived and unperceived elements 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.

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.

I could not pronounce my
k,
d,
and soft
g
sounds. “Kim” came out “Tim.” For a little girl with short hair, who enjoyed playing outside and probably got dirty sometimes, being mistaken for a boy was a huge affront. The family story is that at one point, completely fed up with people who heard me say my name as “Tim,” I almost quit talking to people. Apparently I have long been stubborn. In a rural county that had few social services and no kindergarten program, my parents turned to Easter Seals—which, around 1970, was primarily privately funded. Wherever the funding came from, my parents much appreciated the sliding fee scale.

Looking back, I’m grateful to Easter Seals—once known as the Society for Crippled Children. My gratefulness is for the respect with which they treated my parents and for the fact that, as interpreted through my four- or five-year-old brain, the entire experience was great fun. I got to throw things. That was incredibly empowering, helping me to feel at home in my voice and in my body. That should be the experience of us all.

The creation of this book generated more debts than I can ever list or repay. Generations of scholars, activists, archivists, scrapbookers, and others, some well known and others not, laid the groundwork on which this book is built. People tolerated my out-of-the-blue phone calls, my repetitive e-mails, and my failures to comprehend. More than ever before, it is hard for me to disentangle the interwoven threads of the personal, the intellectual, and the professional. More than ever before, doing so is artificial. Forrest Brooks, Lisa Poupart, and David Voelker shared their wisdom. Daniel Blackie answered many e-mails. Harold and Arlene Ripple provide beautiful space on the Lake Superior shore. Katherine Ott provided hospitable lodging that helped to make research delightful. Jeff Brunner, formerly of the UWGB interlibrary loan, cheerfully accomplished the impossible. Becky Dale does her best to keep me on an even keel. Neil Marcus kindly let me use his poetry. Susan Burch, Andy Kersten, and Michael Rembis generously and adeptly commented on the entire manuscript. At Beacon Press, Gayatri Patnaik acted on her faith in me and this project. Joanna Green provided guidance, good cheer, smarts, time, and wisdom. This book is much better because of her. Both women have incredible patience.

People I know well and those new to me helped in tangible and intangible ways, all profound; with food, phone calls, poetry, love, chocolate, reassurance, care packages, hand holding, bibliographies, occasional snow-blowing, and encouragement. All make my life easier, more pleasant, and remind me of the ways in which Green Bay and the larger academic world consists of many marvelous people. I am thankful for Susan Burch, Eli Clare, Tim Dale, Jim Ferris, Dr. Tracy Gallagher, Linda Kerber, Andy Kersten, Cathy Kudlick, Paul Longmore, Kathie Nielsen, Ron Nielsen, Corbett O’Toole, Katherine Ott, Michael Rembis, Penny Richards, Walt Schalick, Caroline Sullivan, Maya Tuff, Morgan Tuff, Nathan Tuff, and Kris Vespia—so very, very thankful.