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What We Have Done
An Oral History of the Disability Rights Movement
Fred Pelka
University of Massachusetts Press, 2012
Nothing about us without us has been a core principle of American disability rights activists for more than half a century. It represents a response by people with disabilities to being treated with scorn and abuse or as objects of pity, and to having the most fundamental decisions relating to their lives—where they would live; if and how they would be educated; if they would be allowed to marry or have families; indeed, if they would be permitted to live at all—made by those who were, in the parlance of the movement, "temporarily able-bodied."

In What We Have Done: An Oral History of the Disability Rights Movement, Fred Pelka takes that slogan at face value. He presents the voices of disability rights activists who, in the period from 1950 to 1990, transformed how society views people with disabilities, and recounts how the various streams of the movement came together to push through the Americans with Disabilities Act of 1990, the most sweeping civil rights legislation since passage of the Civil Rights Act of 1964. Beginning with the stories of those who grew up with disabilities in the 1940s and '50s, the book traces how disability came to be seen as a political issue, and how people with disabilities—often isolated, institutionalized, and marginalized—forged a movement analogous to the civil rights, women's rights, and gay rights movements, and fought for full and equal participation in American society.
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Wheelchair Warrior
Gangs, Disability, and Basketball
Melvin Juette and Ronald J. Berger
Temple University Press, 2008

Melvin Juette has said that becoming paralyzed in a gang-related shooting was “both the worst and best thing that happened” to him. The incident, he believes, surely spared the then sixteen year-old African American from prison and/or an early death. It transformed him in other ways, too. He attended college and made wheelchair basketball his passion—ultimately becoming a star athlete and playing on the U.S. National Wheelchair Basketball Team.

In Wheelchair Warrior, Juette reconstructs the defining moments of his life with the assistance of sociologist Ronald Berger. His poignant memoir is bracketed by Berger’s thoughtful introduction and conclusion, which places this narrative of race, class, masculinity and identity into proper sociological context, showing how larger social structural forces defined his experiences. While Juette’s story never gives into despair, it does challenge the idea of the “supercrip.”

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When Driving Is Not an Option
Steering Away from Car Dependency
Anna Letitia Zivarts, foreword by Dani Simons
Island Press, 2024
One third of people living in the United States do not have a driver license. Because the majority of involuntary nondrivers are disabled, lower income, unhoused, formerly incarcerated, undocumented immigrants, kids, young people, and the elderly, they are largely invisible. The consequence of this invisibility is a mobility system designed almost exclusively for drivers. This system has human-health, environmental, and quality-of-life costs for everyone, not just for those excluded from it.  If we’re serious about addressing climate change and inequality, we must address our transportation system.

In When Driving is Not an Option disability advocate Anna Letitia Zivarts shines a light on the number of people in the US who cannot drive and explains how improving our transportation system with nondrivers in mind will create a better quality of life for everyone.

Drawing from interviews with involuntary nondrivers from around the US and from her own experience, Zivarts explains how nondrivers get around and the changes necessary to make our communities more accessible. These changes include improving sidewalk connectivity; providing reliable and affordable transit and paratransit; creating more options for biking, scooting, and wheeling; building more affordable and accessible housing; and the understanding the unrecognized burden of asking and paying for rides.

Zivarts shows that it is critical to include people who can’t drive in transportation planning decisions. She outlines steps that organizations can take to include and promote leadership of those who are most impacted—and too often excluded—by transportation systems designed by and run by people who can drive. The book ends with a checklist of actions that you, as an individual living in a car-dependent society, can take in your own life to help all of us move beyond automobility.

When the needs of involuntary nondrivers are viewed as essential to how we design our transportation systems and our communities, not only will we be able to more easily get where we need to go, but the changes will lead to healthier, climate-friendly communities for everyone.
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When I Am Dead
The Writings of George M. Teegarden
Raymond Luczak
Gallaudet University Press, 2007

The Sixth Volume in the Gallaudet Classics in Deaf Studies Series

George M. Teegarden (1852-1936) taught at the Western Pennsylvania School for the Deaf for 48 years, established the printing department, and also served as the first editor of the school’s magazine. Despite these significant contributions, his greatest gift to deaf people was his skill as a writer and poet who was deaf, as readers will discover in When I Am Dead: The Writings of George M. Teegarden.

Editor Raymond Luczak selected Teegarden’s prose in When I Am Dead from several books, including Raindrop, and Stories, Old and New. Noting that these stories were never written for hearing readers, Luczak marvels at Teegarden’s ability to write English prose that the ASL-familiar reader would find incredibly easy to transliterate. By employing a rich blend of original stories and revisions of fables and myths, Teegarden taught his students the importance of improving their reading and writing skills to outfit them “for the battle of life.” He produced a body of work that Luczak characterizes as “a breath of fresh air: quick, painless, and usually told with a sense of wonder.”

Luczak’s choice of poems came from Teegarden’s self-published volume Vagrant Verses, a summation of his affection for Gallaudet College, the Deaf community, and all deaf people. The eponymous poem “When I Am Dead” articulates concisely the beliefs that directed Teegarden’s life of service:

“When I am dead, I hope to be
Remembered—this is true—
Not for my wit or vanities
But what I did for you.”

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When the Phone Rings, My Bed Shakes
The Memoirs of a Deaf Doctor
Philip Zazove
Gallaudet University Press, 1993

Born almost totally deaf, Philip Zazove has spent his entire life beating the odds first by excelling in public schools during an era when most deaf children went to special schools, then by aspiring to become a medical doctor. When the Phone Rings, My Bed Shakes is the remarkable story of his determination and achievement in realizing his dreams.

       Despite his stellar record at Northwestern University, Zazove was rejected by a host of medical schools. This only caused him to press harder, which won him acceptance at Rutgers University. He transferred to Washington University in St. Louis where, again against all advice, he decided to specialize in family practice. In vignettes of his patients, some amusing, others moving, he reveals the dedication and humanity that have made him a respected and well-loved doctor. His story will inspire all who read it.

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Who Will Care For Us?
Long-Term Care and the Long-Term Workforce
Paul Osterman
Russell Sage Foundation, 2017
The number of elderly and disabled adults who require assistance with day-to-day activities is expected to double over the next twenty-five years. As a result, direct care workers such as home care aides and certified nursing assistants (CNAs) will become essential to many more families. Yet these workers tend to be low-paid, poorly trained, and receive little respect. Is such a workforce capable of addressing the needs of our aging population? In Who Will Care for Us?  economist Paul Osterman assesses the challenges facing the long-term care industry. He presents an innovative policy agenda that reconceives direct care workers’ work roles and would improve both the quality of their jobs and the quality of elder care.
 
Using national surveys, administrative data, and nearly 120 original interviews with workers, employers, advocates, and policymakers, Osterman finds that direct care workers  are marginalized and often invisible in the health care system. While doctors and families alike agree that good home care aides and CNAs are crucial to the well-being of their patients, the workers report poverty-level wages, erratic schedules, exclusion from care teams, and frequent incidences of physical injury on the job. Direct care workers are also highly constrained by policies that specify what they are allowed to do on the job, and in some states are even prevented from simple tasks such as administering eye drops.
 
Osterman concludes that broadening the scope of care workers’ duties will simultaneously boost the quality of care for patients and lead to better jobs and higher wages. He proposes integrating home care aides and CNAs into larger medical teams and training them as “health coaches” who educate patients on concerns such as managing chronic conditions and transitioning out of hospitals. Osterman shows that restructuring direct care workers’ jobs, and providing the appropriate training, could lower health spending in the long term by reducing unnecessary emergency room and hospital visits, limiting the use of nursing homes, and lowering the rate of turnover among care workers.
 
As the Baby Boom generation ages, Who Will Care for Us? demonstrates the importance of restructuring the long-term care industry and establishing a new relationship between direct care workers, patients, and the medical system.
 
 
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Why I Burned My Book
Paul Longmore
Temple University Press, 2003
This wide-ranging book shows why Paul Longmore is one of the most respected figures in disability studies today. Understanding disability as a major variety of human experience, he urges us to establish it as a category of social, political, and historical analysis in much the same way that race, gender, and class already have been. The essays here search for the often hidden pattern of systemic prejudice and probe into the institutionalized discrimination that affects the one in five Americans with disabilities.Whether writing about the social critic Randolph Bourne, contemporary political activists, or media representations of people with disabilities, Longmore demonstrates that the search for heroes is a key part of the continuing struggle of disabled people to gain a voice and to shape their destinies. His essays on bioethics and public policy examine the conflict of agendas between disability rights activists and non-disabled policy makers, healthcare professionals, euthanasia advocates, and corporate medical bureaucracies. The title essay, which concludes the book, demonstrates the necessity of activism for any disabled person who wants access to the American dream.
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Window Shopping with Helen Keller
Architecture and Disability in Modern Culture
David Serlin
University of Chicago Press
A particular history of how encounters between architects and people with disabilities transformed modern culture.
 
Window Shopping with Helen Keller recovers a series of influential moments when architects and designers engaged the embodied experiences of people with disabilities. David Serlin reveals how people with sensory and physical impairments navigated urban spaces and helped to shape modern culture. Through four case studies—the lives of Joseph Merrick (aka “The Elephant Man”) and Helen Keller, the projects of the Works Progress Administration, and the design of the Illinois Regional Library for the Blind and Physically Handicapped—Serlin offers a new history of modernity’s entanglements with disability.
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Women with Disabilities
Essays in Psychology, Culture, and Politics
edited by Michelle Fine and Adrienne Asch
Temple University Press, 1989

Women with disabilities are women first, sharing the dreams and disappointments common to women in a male-dominated society. But because society persists in viewing disability as an emblem of passivity and incompetence, disabled women occupy a devalued status in the social hierarchy. This book represents the intersection of the feminist and disability rights perspectives; it analyzes the forces that push disabled women towards the margins of social life, and it considers the resources that enable these women to resist the stereotype.

Drawing on law, social science, folklore, literature, psychoanalytic theory, and political activism, this book describes the experience of women with disabilities. The essays consider the impact of social class, race, the age at which disability occurs, and sexual orientation on the disabled woman's self esteem as well as on her life options. The contributors focus their inquiry on the self perceptions of disabled women and ask: From what sources do these women draw positive self images? How do they resist the culture's power to label them as deviant? The essays describe the ways in which disabled women face discrimination in the workplace and the failure of the mainstream women's movement to address their concerns.


In the series Health, Society, and Policy, edited by Sheryl Ruzek and Irving Kenneth Zola.
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Work Requirements
Race, Disability, and the Print Culture of Social Welfare
Todd Carmody
Duke University Press, 2022
Throughout the history of the United States, work-based social welfare practices have served to affirm the moral value of work. In the late nineteenth century this representational project came to be mediated by the printed word with the emergence of industrial print technologies, the expansion of literacy, and the rise of professionalization. In Work Requirements Todd Carmody asks how work, even the most debasing or unproductive labor, came to be seen as inherently meaningful during this era. He explores how the print culture of social welfare—produced by public administrators, by economic planners, by social scientists, and in literature and the arts—tasked people on the social and economic margins, specifically racial minorities, incarcerated people, and people with disabilities, with shoring up the fundamental dignity of work as such. He also outlines how disability itself became a tool of social discipline, defined by bureaucratized institutions as the inability to work. By interrogating the representational effort necessary to make work seem inherently meaningful, Carmody ultimately reveals a forgotten history of competing efforts to think social belonging beyond or even without work.
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A World without Words
The Social Construction of Children Born Deaf and Blind
David Goode, foreword by Irving Kenneth Zola
Temple University Press, 1994

During the Rubella Syndrome epidemic of the 1960s, many children were born deaf, blind, and mentally disabled. David Goode has devoted his life and career to understanding such people's world, a world without words, but not, the author confirms, one without communication. This book is the result of his studies of two children with congenital deaf-blindness and mental retardation.

Goode spent countless hours observing, teaching, and playing with Christina, who had been institutionalized since age six, and Bianca, who remained in the care of her parents. He also observed the girls' parents, school, and medical environments, exploring the unique communication practices—sometimes so subtle they are imperceptible to outsiders—that family and health care workers create to facilitate innumerable every day situations. A World Without Words presents moving and convincing evidence that human beings both with and without formal language can understand and communicate with each other in many ways.

Through various experiments in such unconventional forms of communication as playing guitar, mimicking, and body movements like jumping, swinging, and rocking, Goode established an understanding of these children on their own terms. He discovered a spectrum of non-formal language through which these children create their own set of symbols within their own reality, and accommodate and maximize the sensory resources they do have. Ultimately, he suggests, it is impractical to attempt to interpret these children's behaviors using ideas about normal behavior of the hearing and seeing world.

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The Wounds That Bind Us
Kelley Shinn
West Virginia University Press, 2023

The improbable and powerful true story of a single mother with prosthetics for both legs who travels the globe with her young daughter in a Land Rover.

“A harrowing memoir. . . . Readers may not want to follow in [Shinn’s] footsteps, but they will never be bored with her as a companion.” ​—Kirkus Reviews

The Wounds That Bind Us is the improbable true story of Kelley Shinn, an orphan at birth who loses her legs at the age of sixteen to a rare bacterial pathogen. She becomes an avid off-road racer and, as a single mother, attempts to drive around the globe in a Land Rover with her three-year-old daughter in tow to bring light to the plight of land mine survivors. With unflinching honesty, exceptional lyricism, and biting humor, Shinn (“that’s two Ns and no shins”) takes readers on a wild journey—literal and emotional—filled with striking characters and landscapes, heartbreaks, and hard-won insights, ultimately arriving at a place of profound redemption.

Told with the energy and intensity of the adventure story it is, this terrifically rich and nuanced examination of a life is also a careful meditation on renewal—a remapping of the world. Guided by the narrator’s keen introspection and her ability to look resolutely at harrowing sorrows and still find hope, joy, and meaning, The Wounds That Bind Us will resonate deeply, long after the last page.

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