A U.S. History of People with Disabilities

article image
Cover Courtesy Beacon Press
“A Disability History of the United States” pulls from primary-source documents and social histories to retell American history through the eyes, words, and impressions of the people who lived it. Throughout the book, Nielsen deftly illustrates how concepts of disability have deeply shaped the American experience—from deciding who was allowed to immigrate to establishing labor laws and justifying slavery and gender discrimination.

A Disability History of the United States(Beacon Press, 2012) by Kim E. Nielsen explores the pivotal role of people with disabilities in our nation’s past and their contribution to our laws, policy, economics, popular culture, and our collective identity. Covering the entirety of U.S. history from pre-1492 to the present, Nielsen uses various concepts of disability and dependency and focuses on mass movements and pivotal daily events, rather than individual triumphs, to deepen our understanding of disability. The concept of disability and the impressions of people with disabilities shape the American story in this excerpt 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, however, 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 sometimes 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.” 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 sometimes 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 resources–not the condition of being one-legged–generated social segregation and unemployment. These are real consequences.

Real consequences include poverty. People with disabilities disproportionately live in poverty and have lower rates of higher education. One of the most troubling aspects of researching this book was reading the historiography on poverty. Many historians of poverty simply assume that it’s an inevitability that people with disabilities live disproportionately in poverty. But the feminization and racialization of poverty in the United States are not natural and unavoidable consequences. Neither is it natural and unavoidable that Mississippi has a higher rate of poverty than Wisconsin. These are the results of specific social structures: specific histories, legal practices, industrialization and development policies, educational-access histories, tax structures, ideologies, and more. A Disability History of the United States  will make clear that people with disabilities have lived and continue to live with disproportionately higher rates of poverty because of specific social structures, ideologies, and practices that hinder their social advancement.

Ideologies and practices that belittle and/or limit people with disabilities arise from ableist attitudes. Ableist attitudes are those that reflect a fear of, an aversion to, or discrimination or prejudice against people with disabilities. They can be as blatant as a refusal to hire someone with an apparent disability, or as subtle as the assumption that everyone attending a concert can stand for two hours. Like racism, sexism, or homophobia, ableism is directed at individuals and built into social structures; it is lived out purposefully, accidentally, and unknowingly. Ableist ideologies shape our media, for example, when people with disabilities are either completely absent or portrayed only as tragic and sad figures. They permeate our dominant standards of beauty and sexiness, definitions of what it means to dance, and measures of healthfulness. They also shape our expectations for leadership and success.

Human variability is immense. We see and hear in varying degrees, our limbs are of different lengths and strengths, our minds process information differently, we communicate using different methods and speeds, we move from place to place via diverse methods, and our eye colors are not the same. Some of us can soothe children, some have spiritual insight, and some discern the emotions of others with astounding skill. Which bodily and mental variabilities are considered inconsequential, which are charming, and which are stigmatized, changes over time–and that is the history of disability.

Parts of A Disability History of the United States unexpectedly saddened me more deeply than I had anticipated. The story of the French slave ship Le Rodeur  conjured mental images that I found and continue to find intensely disturbing–and I hope that readers do too, for it is a human story that should be read as such. I experienced other parts of this story as joyful, funny, a call to action, and invigorating. It is my hope that readers, too, will experience this spectrum of emotions, and be equally exhilarated and stirred by this new perspective on the old American story that many of us know so well. That is the history of disability.

This excerpt has been reprinted with permission from A Disability History of the United States by Kim E. Nielsen and published by Beacon Press, 2012.

In-depth coverage of eye-opening issues that affect your life.