Disability, in History and in Life
 

A Disability History of the United States

by Kim E. Nielsen

Boston, MA: Beacon Press, 2012, 216 pp., $26.95, hardcover

Don’t Call Me Inspirational:

A Disabled Feminist Talks Back

by Harilyn Rousso

Philadelphia, PA: Temple University Press, 2013, 224 pp., $24.95, paperback

Reviewed by Susan McGee Bailey

Kim Nielsen, a professor of disability studies and history at the University of Toledo, has written previous books on Anne Sullivan Macy and Helen Keller. Her new volume addresses a larger landscape. A Disability History of the United States is the first broad history of the United States to place the lives of people with disabilities at the center of the narrative. It is the second volume in Beacon Press’s Revisioning American History Series (A Queer History of the United States, by Michael Bronski, was published in 2011.) 

Nielsen does even more than use the lens of disability to extend a familiar national narrative; she interrogates the concept of disability itself. In a country founded upon a “declaration of independence,” common understandings of able-bodiedness and disability have fundamentally shaped the national dialogue about the meaning of American citizenship: anyone who deviates from the hale and hearty white male “norm” poses a problem. He or she cannot perform the duties of a good citizen. And in fact, throughout US history, the established powers have used all kinds of differences—of physical or cognitive ability, gender, race, ethnicity, sexuality, or class—to deny numerous groups of people full citizenship. Nielsen’s assumption that US history is the complex interweaving of many groups, the intersection of many struggles rather than a singular narrative, is not new—but few perspectives have illuminated this truth so clearly. 

Example after example illustrates how “disability” has been a catch-all justification for exclusion. Neilsen writes of how proponents of slavery routinely described the Africans brought forcibly to North America as physically and mentally inferior, and argued that slavery was “a ‘beneficial kindness’ owed to those in need of care.” Those seeking to limit women’s opportunities for higher education listened to Harvard Medical School Professor Edward H. Clarke, who warned in 1897 that higher education was unhealthy for women. He cited the case of a woman who, he said, had been “permanently disabled” by her college education, as “no woman could simultaneously use ‘a good brain’ and ‘a good reproductive system’”—it was simply too much for the female body.

Nielsen begins her history before the arrival of European colonists in North America. Starting here, with a discussion of the views of indigenous peoples on physical and cognitive differences, she quickly introduces readers to a central theme of her narrative—that concepts and definitions of disability are shaped by culture and changing conditions.

Most indigenous groups had no word for disability.  Nielsen writes, “In indigenous cultures ‘disability’ occurred when someone lacked or had weak community relationships.” She uses as an example a young man with cognitive impairments who could nonetheless provide a service needed by the community such as carrying water. By doing so, he was an integral part of the community and lived in balance with himself and others. Conditions later labeled as “mental illness” were seen by indigenous peoples as instances of “unhealthy imbalance.” The stark contrast between these perspectives and those most readers hold today is immediately thought provoking.

Nielsen contrasts indigenous views with those of the European colonists. In an agrarian economy, most people, even those with some physical impairments, could perform productive work, insuring their self sufficiency, so scant attention was paid to physical differences. Cognitive impairments were more problematic.  While the Puritan colonists considered these conditions “sent by God,” they posed questions of care. Gradually the rational and scientific approaches of the American Enlightenment prompted attempts to find solutions and treatments  rather than theological explanations. Cotton Mather, the famous Puritan minister, supported smallpox inoculations, and in 1773 Virginia established the first institution specifically designed to care for those with mental and cognitive disabilities, rather than lumping them in with drunkards and vagabonds.

The upheavals of the Civil War and industrialization led to an increase in physical disabilities from war injuries and industrial accidents, as technology created more, and more dangerous, employment options.  So-called ugly laws were passed to keep those with physical disfigurements off the streets.  In 1867 San Francisco banned “any person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object” from all public spaces in the city.  Other cities soon adopted similar regulations. These laws mostly affected poor people who, as peddlers or beggars, were more likely than the wealthy to spend significant time in public spaces. And while some new institutions, such as the National Deaf-Mute College founded in 1864 and renamed Gallaudet College thirty years later, offered education for deaf, blind, or “feeble minded” students, other institutions warehoused anyone unfortunate enough to land in them in unbearable conditions, often with few options for release.

The era that historians have labeled Progressive further narrowed the definition of citizenship. Many “reformers” found ways to marginalize and exclude people they considered undesirable.  Would-be immigrants were subjected to invasive health inspections to determine whether they were sexual “deviants” or had communicable or sexually transmitted diseases, cognitive or behavioral deficiencies, or physical disabilities. The capacity for economically productive work remained central to the definition of health and citizenship, and determinations often rested on racial and gender myths and prejudices.  Eugenics, despite being repeatedly discredited, captured public attention as a way to insure that only “good traits” were reproduced, and citizens were required to conform to eugenicist standards of cognitive, physical, racial, and socioeconomic purity and productivity 

The chapter “We Don’t Want Tin Cups: Laying the Groundwork, 1927-1968” is particularly informative.  While most with an interest in disability rights are familiar with the struggles from the 1970s on, fewer are aware of the important organizing work of earlier activists.  Parents, particularly mothers, advocating for children with cognitive disabilities formed the National Association for Retarded Children in 1952. The organization was renamed the National Association for Retarded Citizens in 1974 and simply the ARC in 1992.  The evolution of the name illustrates forty years of changing societal perceptions.

During the 1940s, conscientious objectors to World War II who were assigned to work in institutions for people with psychiatric disorders and/or developmental disabilities led the way in exposing the unspeakable conditions endemic in such places. Perhaps most importantly, early efforts to build alliances among and across groups advocating on behalf of people with specific disabilities led to explorations of the ways discrimination affected people across a wide range of disabilities and of the hierarchy of disabilities within the broader disability movement.

The book’s final chapter illustrates the significant progress disability activists have made, including passage of Section 504 of the 1973 Rehabilitation Act and the 1975 Education for All Handicapped Children Act (now known as the Individuals with Disabilities Education Act, or IDEA).  Since 1975, IDEA has required states to provide a free, appropriate public education to all children. Before this, only twenty percent of children with disabilities attended public schools, and many states actively barred them from public classrooms. The practical result of IDEA was the integration of students with special needs into public schools across the country. This, in turn, has given generations of students the opportunity to learn first hand about people with disabilities and has, I believe, helped to ease the stigma attached to disability and promoted increased integration of a wide range of people with disabilities into mainstream culture, a trend continued by the passage of the Americans with Disabilities Act in 1990.

Harilyn Rousso’s memoir Don’t Call Me Inspirational is at the other end of the spectrum from Nielsen’s sweeping history. An intimate portrait of one woman’s journey, it is a worthy  companion piece to read next to the larger history. Rousso provides an up-close encounter with what physical disability means in the life of a woman born in midtwentieth-century America. 

Complications at Rousso’s birth resulted in cerebral palsy and noticeable physical differences—facial grimaces, slurred speech, an uneven gait. Her short, engaging memoir recounts how she moved from denying her disability to claiming it as “a source of positive identity and community.” Rejecting a chronological approach in favor of a deliberate patchwork, she writes, “As a visual artist, I think about the book as a collage or a series of images about my life rather than a formal portrait.” She invites readers to create their own collage by reading the book’s 52 short chapters in any sequence they choose.  

This approach is especially fitting for a book designed to reach disabled girls and young women, and to give them permission to make their own decisions rather than follow a prescribed path from a single starting point to one, and only one, ending. It is also an effective structure for a memoir that proclaims itself as a conversation: “a disabled feminist talks back.” The short chapters replicate the way we often come to know a friend—a bit at a time, a few key facts at first, perhaps bits and pieces of family history, then more detailed stories.  As the friendship deepens, conversations become more intimate—sex, romance, strongly held beliefs, successes and failures, joys and heartaches.   Even the occasional repetition in these short chapters mirrors the kinds of talking we do with friends—we repeat certain critical facts, retell bits of experience, but connect them with different issues and aspects of our life stories.

Rousso divides her book into five sections organized around major themes in her life. Anyone who has had experience with noticeable physical disabilities will identify immediately with the title of the first: “Close Encounters with the Clueless.”  In it, she not only deals with what she calls “The Stare” but also provides information about her birth and her mother’s fierce determination that her daughter fit in with other children her age.

Long before IDEA required the integration of children with special needs into public classrooms, Rousso was among the small group of those with disabilities who attended public school. She missed the opportunity to develop friendships with others with disabilities, but learned valuable lessons about the limits of passing and about dealing with the world of the able-bodied. Her mother’s determination became her determination, which led to years of denial, significant accomplishments, and major uncertainties. It was not until her late twenties, she writes, that she first encountered blatant discrimination. With a bachelor’s degree in economics from Brandeis and a master’s in social work, she enrolled in a psychotherapy institute.  After a year, the administration asked her to leave. They felt her cerebral palsy mannerisms would distress her future clients.

As outrageous and hurtful as this overt discrimination was, Rousso writes with painful honestly about how it led her to a clearer understanding of prejudice against people with disabilities, both those of others and her own. It forced her, she says, to “embrace my identity as a person with a disability still further.” It fueled her activism. 

Rousso writes of feminism as her pathway both to a fuller sense of self and to advocacy on behalf of people with disabilities. Her strong feminist perspective and commitment make her sharp critique of feminist support—and the lack of it—for the rights of disabled women particularly incisive. Her chapter title, “Token of Approval,” says it all. Too many of us have learned too little from our own struggles for equality. Rousso was the first and only disabled board member of several feminist organizations.  At first hopeful that she could make a difference, she felt increasingly ineffectual, finally resigning from her first board in frustration. Never one to give up, she continued to accept board roles. Her expectations were lower, but she believed she could “open the door a bit.” She did that and more, all the while experiencing first hand the excruciatingly slow pace of organizational change, even in organizations focused on changing society. Disabled women are still rarities on boards or in leadership positions in mainstream women’s organizations, and Rousso’s assessment is characteristically blunt: “The welcome mat is not yet out.”

Don’t Call Me Inspirational is many things: a coming of age story, a family memoir, and a collection of beautifully written essays on what disability means for one woman. It is also in-your-face straight talk for everyone who assumes people with disabilities are all the same, all “less than,” all wishing they were different from the way they are. She shows the how the label “inspirational” is often just one more way of expressing a sense of difference rather than an understanding of equality.   

Both of these books belong in college classrooms—in US history, women’s and gender studies and, of course, disability studies. They are lively, insightful, and moving reading for both general audiences and scholars. Some readers may be familiar with some of the information, but few will know it all. The books can each inspire, in its own way, the work of advocacy both among and for those with disabilities.

Because the reality is that not all people with disabilities can achieve traditional forms of independence, nor can all advocate for themselves. Many require 24-hour care. Rousso hints at this issue in her discussion of her own prejudices about people with disabilities, her own coming to terms with seeing herself and being seen as a disabled woman

Nielsen concludes her book with an important reminder of how ableist ideologies define disability and make it difficult for disabled people to develop a sense of pride, saying, “Without pride, individual and collective resistance to oppression becomes nearly impossible.” The unfinished business in the fight for justice for people with disabilities is the work of moving our culture’s view closer to that of the indigenous peoples on this continent. This includes an understanding that even the most severely impaired have gifts to share, and that a healthy society is one that fosters relationships. In addition, to be truly inclusive, the struggle must include not only advocacy for people with disabilities but also advocacy for their caregivers. If their work is not valued, they too are robbed of pride and unable to insure good, just care for all.  

Susan McGee Bailey directed the Wellesley Centers for Women from 1985 to 2011. The mother of a daughter with physical and intellectual disabilities, she has been active in volunteer work for people with disabilities for forty years.

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