The first book to cover the entirety of disability history, from pre-1492 to the present
Disability is not only the story of someone we love or the story of whom we may become; rather it is undoubtedly the story of our nation. Covering the entirety of US history from pre-1492 to the present, A Disability History of the United States is the first book to place the experiences of disabled people at the center of the American narrative. In many ways, it’s a familiar telling. In other ways, it is a radical repositioning of US history. By doing so, the book casts new light on familiar stories, such as slavery and immigration, while breaking ground about the ties between nativism and oralism in the late nineteenth century and the role of ableism in the development of democracy.
A Disability History of the United States pulls from primary-source documents and social histories to retell US history through the eyes, words, and impressions of the people who lived it. As historian and disability scholar Nielsen argues, to understand disability history isn’t to narrowly focus on a series of individual triumphs but rather to examine mass movements and pivotal daily events through the lens of varied experiences. 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. Included are absorbing—at times horrific—narratives of blinded slaves being thrown overboard and women being involuntarily sterilized, as well as triumphant accounts of disabled miners organizing strikes and disability rights activists picketing Washington.
Engrossing and profound, A Disability History of the United States fundamentally reinterprets how we view our nation’s past: from a stifling master narrative to a shared history that encompasses us all.
About the Series
Beacon Press’s ReVisioning History series consists of accessibly written books by notable scholars that reconstruct and reinterpret US history from diverse perspectives.
“By displacing the able-bodied, self-subsisting individual citizen as the basic unit (and implied beneficiary) of the American experience, [Nielsen] compels the reader to reconsider how we understand personal dignity, public life, and the common good.” —Scott McLemee, Inside Higher Education
“A scholarly yet stirring narrative of our nation’s uneasy relations-part pity and empathy, part discrimination and social stigmatization-with disabled people.” —Tony Miksanek, Booklist
“Nielsen excavates the long-buried history of physical difference in America and shows how disability has been a significant factor in the formation of democratic values. . . . The range of this book is marvelous.” —Stephen Kuusisto, The Wilson Quarterly
“At last: a truly inclusive history. This groundbreaking book braids together the history every American knows with the history most Americans have never even imagined-and our society has long forgotten. Fascinating, enlightening, absorbing, well-researched, and concise, A Disability History of the United States isn’t just the book I wish I’d read in school. It’s the book I’d encourage every American to read.” —Rachel Simon, author of The Story of Beautiful Girl and Riding The Bus With My Sister
“This brave book is full of surprises; a page-turner that tells a story I had not known. In every chapter there is at least one episode that made me shiver. Read it for Kim Nielsen’s fresh interpretations, read it for her wisdom. U.S. history will not look the same.” —Linda K. Kerber, author of No Constitutional Right to Be Ladies
“Path-breaking, meticulously researched, and drawing on a stunning array of sources, A Disability History of the United States fundamentally changes our understanding of the nation’s past. I was amazed by Kim Nielsen’s ability to convey a richly peopled history while still detailing a national experience. Disability, Nielsen reminds us, is beautifully and inextricably entangled with all the other forces that shape identities and communities. This remarkable ‘peoples’ story’ stretches the chronological, analytical, and thematic borders of U.S. and disability history. Everyone interested in U.S. and disability histories will benefit from reading this book.” —Susan Burch, author of Signs of Resistance
“A wonderful, beautifully written, remarkable achievement that will certainly become a classic within the field and should become standard reading.” —Michael A. Rembis, Director, Center for Disability Studies, University at Buffalo
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.
Introduction
ONE
The spirit chooses the body it will occupy:Indigenous North America, Pre-1492
TWO
The poor, vicious, and infirm:Colonial Communities, 1492ñ1700
THREE
The miserable wretches were then thrown into the sea:The Late Colonial Era, 1700ñ1776
FOUR
The deviant and the dependent:Creating Citizens, 1776ñ1865
FIVE
I am disabled, and must go atsomething else besides hard labor: The Institutionalization of Disability, 1865ñ1890
SIX
Three generations of imbeciles are enough:The Progressive Era, 1890ñ1927
SEVEN
We donít want tin cups:Laying the Groundwork, 1927ñ1968
EIGHT
I guess Iím an activist. I think itís just caring:Rights and Rights Denied, 1968ñ
Epilogue
Acknowledgments
Notes
Index
- “14 Books for a More Inclusive Look at American History,” Book Riot, included in book roundup
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A Disability History of the United States is mentioned in a Boston Globe feature on books about disabilities.
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Click here to read a Publishers Weekly review of A Disability History of the United States
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Click here to listen to an interview on WNYC/PRI's The Takeaway with John Hockenberry on October 2
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Click here to read a feature on UT News
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Click here to read an interview with Nielsen in the Toledo Free Press
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Click here to listen to an interview with Nielsen on 89.9 WORT's 8 O'clock Buzz
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Click here to listen to an interview with Kim Nielsen on Focus/WILL-AM 580
Contents
Synopsis
A Disability History of the United States is the first comprehensive account of disability in America, from pre-1492 to the present. This book re-examines the familiar narrative of American history, with an emphasis on people with physical, cognitive, psychological, and sensory disabilities. As a group, disabled people have often been marginalized and ignored, both in our society and in previous historical accounts. However, the category of disability is fluid, and one that many of us will occupy at some point in our lives. Disability is intertwined with every other aspect of American life, from religion to race and class relations. This book explores the role of ableism in slavery, war, and immigration, as well as gender and racial discrimination. Disability history and disability rights impact all Americans.
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About the Author
Kim E. Nielsen is a professor of Disability Studies at the University of Toledo, where she also teaches courses in History and Women’s and Gender Studies. . She is the author of three previous books: Beyond the Miracle Worker: The Remarkable Life of Anne Sullivan Macy and Her Extraordinary Friendship with Helen Keller; The Radical Lives of Helen Keller; and Un-American Womanhood: Anti-Radicalism, Anti-feminism, and the First Red Scare. She lives in Toledo, Ohio.
Praise
“At last: a truly inclusive history. This groundbreaking book braids together the history every American knows with the history most Americans have never even imagined—and our society has long forgotten. Fascinating, enlightening, absorbing, well-researched, and concise, A Disability History of the United States isn’t just the book I wish I’d read in school. It’s the book I’d encourage every American to read.” —Rachel Simon, author of The Story of Beautiful Girl and Riding The Bus With My Sister
“This brave book is full of surprises; a page-turner that tells a story I had not known. In every chapter there is at least one episode that made me shiver. Read it for Kim Nielsen’s fresh interpretations, read it for her wisdom. U.S. history will not look the same.” —Linda K. Kerber, author of No Constitutional Right to Be Ladies
“Path-breaking, meticulously researched, and drawing on a stunning array of sources, A Disability History of the United States fundamentally changes our understanding of the nation’s past. I was amazed by Kim Nielsen’s ability to convey a richly peopled history while still detailing a national experience. Disability, Nielsen reminds us, is beautifully and inextricably entangled with all the other forces that shape identities and communities. This remarkable ‘peoples’ story’ stretches the chronological, analytical, and thematic borders of U.S. and disability history. Everyone interested in U.S. and disability histories will benefit from reading this book.” —Susan Burch, author of Signs of Resistance
“A wonderful, beautifully written, remarkable achievement that will certainly become a classic within the field and should become standard reading.” —Michael A. Rembis, Director, Center for Disability Studies, University at Buffalo
“By displacing the able-bodied, self-subsisting individual citizen as the basic unit (and implied beneficiary) of the American experience, she compels the reader to reconsider how we understand personal dignity, public life, and the common good.” —Inside Higher Ed.
“A scholarly yet stirring narrative of our nation’s uneasy relations—part pity and empathy, part discrimination and social stigmatization—with disabled people.” —Booklist
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Questions for Discussion
Introduction
- Kim Nielsen quotes fellow historian Linda Kerber: “The myth of the lone individual is a trope, a rhetorical device. In real life no one is self-made; few are truly alone” (xiii). How have individualism and the concept of the “self-made man” shaped American culture? Have they affected the way we view persons with disabilities and people from other minority groups?
- While writing about the amorphous definition of disability, Nielsen writes: “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” (xiii). How does disability overlap with other identity categories, such as race, gender, and sexual orientation? Is disability a more diverse or harder to define category than these other groups?
Chapter One: The Spirit Chooses the Body it Will Occupy
- How did Native Americans’ attitudes towards people with disabilities reflect their beliefs about order and harmony? Were any tribes or social classes exceptions to this worldview?
- How did interactions with Europeans affect Native Americans’ treatment of disabled people?
- Did Native American “healing ceremonies” differ from efforts to “heal” disabled people? Why or why not?
- This chapter describes the smallpox epidemic among Native Americans. How is disability different from disease? How can they overlap?
Chapter Two: The Poor, Vicious, and Infirm
- Why do you think European colonists tolerated mental and physical disabilities in some residents (such as the psychologically disabled schoolteacher James Otis), yet barred other “infirm” people from entering the colonies?
- How did Europeans’ concepts of disability differ from Native Americans’? How did their respective cultures shape their views?
- This chapter introduces the idea that disability is the inability to perform manual labor. Is this definition still used in American society today? How?
- This chapter describes what Puritans called the “monstrous births.” How did Puritan theology influence their opinion of stillborn or deformed infants?
- How did the Puritans see disabled people symbolically? Is disability still used a metaphor today, and if so, how?
Chapter Three: The Miserable Wretches Were Then Thrown Into the Sea
- This chapter includes a Kiowa story that personifies smallpox: “I am one with the white men—they are my people as the Kiowas are yours. Sometimes I travel ahead of them and sometimes behind. But I am always their companion and you will find me in their camps and their houses (40).” What does this story illustrate about Native American concepts of disease and their conception of Europeans?
- How did disability complicate the notion of slaves as property?
- What does the account of the slave ship Le Rodeur reveal about the dehumanization of slaves? How did slave owners value—and devalue—slaves?
Chapter Four: The Deviant and the Dependent
- Did the idea of disability as the inability to perform labor apply to slaves? Why?
- Definitions of disability were used both to justify and oppose slavery. Pseudoscientific “experts” argued that African-Americans’ bodies were inherently defective and inferior to whites’, while some abolitionists argued that “it is slavery that has disabled the slave” (58). Why do you think both groups tried to use science to rationalize their views? How is controversial scientific evidence used in the news today?
- How did stereotypes of disabled people converge with stereotypes of slaves?
- How did the definition of disability determine who was granted full citizenship, who was educated, and who was not? Were women, Native Americans, and enslaved people considered effectively disabled? Why?
Chapter Five: “I am Disabled, and Must Go at Something Besides Hard Labor”
- This chapter describes the development of the disabled veterans’ pension system. Whom did the system exclude and why? How did the treatment of disabled people differ according to their social class?
- What was the supposed purpose of the “ugly laws?” Were their actual effects different? Why do you think these laws came to be called “ugly?”
- This chapter describes both white and black people’s bodies with mutations or extreme variations being put on display. What were some of the differences in the ways black and white bodies were displayed?
- During the post-Civil War Era, many institutions for mentally, physically, and psychologically disabled people proliferated. What distinguished beneficial institutions like Gallaudet from abusive ones? How did race and gender play a role in these institutions?
- Many male educators during this era thought that women’s brains were inferior and unable to withstand higher education. Is essentialism (the belief that race, gender, or sexual orientation defines one’s personality) still relevant in America?
Chapter Six: “Three Generations of Imbeciles are Enough”
- In 1923, President Calvin Coolidge justified immigration restrictions by saying, “America must be kept American” (100). How was prejudice against disabled people used to perpetuate ethnic and racial stereotypes against immigrants?
- This chapter describes the legal case of Alice Smith, who had a child out of wedlock and a family history of mental disability, but was ultimately not sterilized. What qualities made authorities consider citizens like Smith unfit to reproduce?
- When the Supreme Court legalized forced sterilizations in Buck v. Bell, Justice Oliver Wendell Holmes used the language of military sacrifice: “It would be strange if [the state] could not call upon those who already sap the strength of the State for these lesser sacrifices . . . in order to prevent our being swamped with incompetence” (117). Is this a valid comparison? Have Americans’ rights been sacrificed for a perceived common good at other times in history?
- Are any reproductive issues today comparable to eugenics? Do they disproportionately affect certain groups, or they equally pressing to everyone?
Chapter Seven: We Don’t Want Tin Cups
- During the Great Depression, some deaf groups “sought to distinguish themselves from those they considered the truly disabled” (136). Why do think deaf groups would try to distance themselves from other disabled people? Are there any recent examples of people distancing themselves from others with disabilities?
- This chapter describes Franklin D. Roosevelt’s treatment for polio at Warm Springs Institute. Why do you think Roosevelt and his advisors tried to hide his disability?
- Did the Great Depression equalize people with disabilities, or further marginalize them? How?
- How did World War II change the American public perception of disability?
Chapter Eight: “I Guess I’m an Activist. I Think It’s Just Caring.”
- This chapter describes the efforts to pass the ADA and its precursors, The Rehabilitation Act of 1973 and the Architectural Barriers Act. What struggles did disabled rights activists have in common with other minorities? What unique obstacles did they face?
- Like members of other equal rights groups, disability rights activists asserted their equality and humanity. Can accessibility be considered a form of integration, or is it not comparable to racial de-segregation?
- This chapter explains that equal access legislation is often avoided or unenforced. What more needs to be done in the arena of disability rights?
Epilogue
- Why do you think the author chose to include personal details, such as her daughter becoming disabled and her own childhood memories of speech therapy? Did you think these details added or detracted from the book? Is it helpful to see how our lives fit into a larger societal and historical context?
After You Read
- Has your definition of disability changed while reading this book? If so, how?
- Did any parts of this book surprise or shock you? Why? Were there any famous historical figures whom you hadn’t previously considered disabled?
- Throughout American history, has disability been viewed primarily as a medical issue or as more of a social issue? Has this ever shifted?
- Has American government and society treated those who were born disabled differently than those who became disabled? If so, how?
- This book cites documents that use words like “cripple” and “idiot,” which have negative connotations today. How have the accepted terms we use to describe disabled people changed over time? Are there any controversies in the news today about language and disability?
- What misconceptions and stereotypes about disability persist in our culture? Where do these stereotypes come from—pop culture, politics, or elsewhere?
- Were you familiar with disability history or disability studies before reading the book? What work still needs to be done in the fields of disability scholarship?
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Suggestions for Further Reading
Carey, Allison C. On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth Century America. Philadelphia: Temple University Press, 2009.
Clare, Eli. Exile and Pride: Disability, Queerness, and Liberation. Boston: South End Press, 2009.
Davis, Lennard J. The Disability Studies Reader (4th Ed.) New York: Routledge, 2013.
Fleischer, Doris Zames, and Frieda Zames. The Disability Rights Movement: From Charity to Confrontation. Philadelphia: Temple University Press, 2001.
Lucas, Ceil (ed). Multilingualism and Sign Languages: From the Great Plains to Australia. Washington: Gallaudet University Press, 2002.
Schweik, Susan M. The Ugly Laws: Disability in Public. New York: NYU Press, 2010.
Shapiro, Joseph P. No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Three Rivers Press, 1994.
Susan Nussbaum, Good Kings, Bad Kings (NY: Algonquin Books, 2013).
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