About the Author
The author of 3 books, including two on Helen Keller and one on Anne Sullivan Macy, Kim E. Nielsen is professor of disability studies at the University of Toledo and was founding president of the Disability History Association.
Excerpt. © Reprinted by permission. All rights reserved.
From the Introduction
When I crossed the stage to receive my PhD in history in 1996, I had no plans to become a historian of disability. I love history: the captivating stories and the satisfying intellectual bite of a vigorous analysis. At the time, if asked, and if I’d been honest, I’d have considered the topic of disability too “soft”—all that pity and empathy—too boring, and too far removed from the real “hard” stories of history. Was I wrong!
I’ve learned that disability pushes us to examine ourselves and the difficult questions about the American past. Which peoples and which bodies have been considered fit and appropriate for public life and active citizenship? How have people with disabilities forged their own lives, their own communities, and shaped the United States? How has disability affected law, policy, economics, play, national identity, and daily life? The answers to these questions reveal a tremendous amount about us as a nation.
A Disability History of the United States places the experiences of people with disabilities at the center of the American story. In many ways, this is a familiar telling. In other ways, how- ever, it is a radical repositioning of US history. As such, it casts new light on familiar stories (such as slavery and immigration), while also telling new stories (such as the ties between nativism and oralism in the late nineteenth century). It also makes clear that there has been no singular disability experience. Although people with disabilities share social stigmatization, and some- times are brought together by common experiences and common goals, their lives and interests have varied widely according to race, class, sexuality, gender, age, ideology, region, and type of disability—physical, cognitive, sensory, and/or psychological.
While telling the history of people with disabilities, A Disability History of the United States will also tell the history of the concept of disability. These are two very different tasks. Throughout US history, disability has been used symbolically and metaphorically in venues as diverse as popular culture (freak shows, for example) and language (“That’s so lame”; “What a retard”; “special”).
When“disability” is considered to be synonymous with “deficiency” and “dependency,” it contrasts sharply with American ideals of independence and autonomy. Thus, disability has served as an effective weapon in contests over power and ideology. For example, at varying times, African Americans, immigrants, gays and lesbians, poor people, and women have been defined categorically as defective citizens incapable of full civic participation.
The story of US history is often told as a story of independence, rugged individualism, autonomy, and self-made men (and occasionally women) who, through hard work and determination, move from rags to riches. Just as the colonists sought and gained independence from Great Britain in order to create a successful and powerful country, so must individual citizens seek and gain independence in order to create successful and powerful selves. The idealized notion holds that we are a nation of Horatio Algers, perpetual train engines chugging our way (I think I can, I think I can) up to the city on the hill, insisting that we can do it ourselves. And, of course, the US democracy is founded on the premise that citizens are capable. It is the responsibility and privilege of citizens to vote, contribute economically, and have a say in their government. As citizens, as good citizens, we are to “stand on our own two feet” and “speak up for ourselves” (ableist phrases, if ever there were). In this version of the national story, independence is good and dependency is bad. Dependency means inequality, weakness, and reliance on others.
When disability is equated with dependency, disability is stigmatized. Citizens with disabilities are labeled inferior citizens. When disability is understood as dependency, disability is posited in direct contrast to American ideals of independence and autonomy.
In real life, however, just as in a real democracy, all of us are dependent on others. All of us contribute to and benefit from the care of others—as taxpayers, as recipients of public education, as the children of parents, as those who use public roads or transportation, as beneficiaries of publicly funded medical research, as those who do not participate in wage work during varying life stages, and on and on. We are an interdependent people. As historian Linda Kerber wrote, critiquing the gendered nature of the American ideal of individualism, “The myth of the lone individual is a trope, a rhetorical device. In real life no one is self-made; few are truly alone.” Dependency is not bad—indeed, it is at the heart of both the human and the American experience. It is what makes a community and a democracy.
The use of disability as an analytic tool matters in our national story because it forces consideration of the strengths, weaknesses, and contradictions of American ideals. Taking note of race, class, and gender, scholars have examined the historical expansion of democracy. It is time to do the same for disability. Additionally, a richer understanding of US history demands that we use disability to better understand the interdependent nature of democratic communities.
Disability is not the story of someone else. It is our story, the story of someone we love, the story of who we are or may become, and it is undoubtedly the story of our nation. It is, quite simply, the American story in all of its complexities. The story of US history is one of many efforts to define, contest, and enshrine a specific national body as best for the nation—a national body both individual and collective.
But . . . what is disability? Who are people with disabilities? And conversely, what does it mean to be nondisabled? When the US Supreme Court struggled to define obscenity in 1964, Justice Potter Stewart threw up his hands in frustration and wrote, “I know it when I see it.”2 It’s temptingly easy to do the same about disability. We generally assume that disability is a clearly defined category, unchanging and concrete. Closer inspection, however, reveals that disability is often elusive and changing. Not only do people with disabilities have a history, but the concept of disability has a history as well.
The dominant method of defining disability assumes disability to be a medical “problem” with a clear “cause” that must be “treated” in an effort to find a “cure.”
This framework considers disability to stem from bodily-based defects and tends to define disabled people almost exclusively by those diagnostic defects
(and supposedly nondisabled people by their lack of such defects).
It erroneously presumes disability to be ahistorical—that is, to have always had the same, unaltering definition. Such a narrow conception erases the widely diverse and rich lives of so many people with disabilities—for whom disability likely matters, but who also define themselves according to and whose lives are shaped by race, sexuality, gender, class, political ideology, athleticism, their favorite hobby, whether or not they like yappy dogs, and the like. Disability can include disease or illness, but it often does not, and nondisabled people can be ill. Illness some- times leads to disability (but it often does not), and when it does the illness can go away but the disability remain. Illness, disease, and disability are not synonymous.
Defining disability is difficult—and that’s part of my argument. Although the definition theoretically has been based on bodies, the categorization of bodies as disabled has been shaped by factors such as gender, race, sexuality, education, levels of industrialization or standardization, access to adaptive equipment or privacy, and class. With age and medical care, as well as the vagaries of life, or simply daily context, one can move in and out of the category of “people with disabilities.” One can be temporarily disabled due to accident or illness. Disabilities can be easily “read” by others (signified by the presence of a wheelchair or the sounds of a speech impediment), or more difficult to discern (such as some psychological disabilities or neurological disabilities).
Disability can be contextual, and its meanings have changed over time. A simplistic example: a fellow historian and I once spent a delightful few days in Montreal at an academic conference. Those around me read my body as nondisabled. The white cane of my friend led others to read her as blind and disabled. Waiters and cab drivers always looked to me to take the lead. However, and to their dismay, I don’t speak French. Luckily, my colleague is fluent in French. In that context, my linguistic deficiencies became far more of an impediment, far more disabling, than her blindness. Disability is not just a bodily category, but instead and also a social category shaped by changing social factors—just as is able-bodiedness.
This is not to argue that we should all hold hands and cheerfully insist that we’re all disabled in some way or another. That ignores the lived reality that disability can bring physical discomfort or difficulty. It also ignores the historical reality that being defined as disabled has made access to power and resources limited or difficult; and that hierarchies of power contribute to definitions of disability. For example, in the nineteenth century, medical experts argued that menstruation and reproduction so impaired women’s bodies (those of middle and upper-class white women, at least) that their exclusion from higher education and employment was absolutely necessary, for themselves and for the greater good of society. And in the early twentieth century, if public transportation was not accessible, and employers refused to hire a man with only one leg, then exclusionary ideas and re- sources—not the condition of being one-legged—generated social segregation and unemployment. These are real consequences.
