A SCHOLARLY BOOK REPOSITORY
In the first sustained examination of disability through the lens of political theory, The Capacity Contract shows how the exclusion of disabled people has shaped democratic politics. Stacy Clifford Simplican demonstrates how disability buttresses systems of domination based on race, sex, and gender. She exposes how democratic theory and politics have long blocked from political citizenship anyone whose cognitive capacity falls below a threshold level⎯marginalization with real-world repercussions on the implementation of disability rights today.
Simplican’s compelling ethnographic analysis of the self-advocacy movement describes the obstacles it faces. From the outside, the movement must confront stiff budget cuts and dwindling memberships; internally, self-advocates must find ways to demand political standing without reinforcing entrenched stigma against people with profound cognitive disabilities. And yet Simplican’s investigation also offers democratic theorists and disability activists a more emancipatory vision of democracy as it relates to disability⎯one that focuses on enabling people to engage in public and spontaneous action to disrupt exclusion and stigma.
Taking seriously democratic promises of equality and inclusion, The Capacity Contract rejects conceptions of political citizenship that privilege cognitive capacity and, instead, centers such citizenship on action that is accessible to all people.
The Girls and Boys of Belchertown offers the first detailed history of an American public institution for intellectually disabled persons. Robert Hornick recounts the story of the Belchertown State School in Belchertown, Massachusetts, from its beginnings in the 1920s to its closure in the 1990s following a scandalous exposé and unprecedented court case that put the institution under direct supervision of a federal judge. He draws on personal interviews, private letters, and other unpublished sources as well as local newspapers, long out-of-print materials, and government reports to re-create what it was like to live and work at the school. More broadly, he gauges the impact of changing social attitudes toward intellectual disability and examines the relationship that developed over time between the school and the town where it was located.
What emerges is a candid and complex portrait of the Belchertown State School that neither vilifies those in charge nor excuses the injustices perpetrated on its residents, but makes clear that despite the court-ordered reforms of its final decades, the institution needed to be closed.
Long a generous benefactor of MR-related organizations, Joseph P. Kennedy made MR the special charitable interest of the family foundation he set up in the 1950s. Although he gave all of his children official roles, he involved his daughter Eunice in performing its actual work -- identifying appropriate recipients of awards and organizing the foundation's activities. With unique access to family and foundation papers, Shorter brings to light the Kennedy family's strong commitment to public service, showing that Rose and Joe taught their children by precept and example that their wealth and status obligated them to perform good works. Their parents expected each of them to apply their considerable energies to making a difference.
Eunice Kennedy Shriver took up that charge and focused her organizational and rhetorical talent on putting MR on the federal policy agenda. As a sister of the President of the United States, she had access to the most powerful people in the country and drew their attention to the desperate situation of families affected by mental retardation. Her efforts made an enormous difference, resulting in unprecedented public attention to MR and new approaches to coordinating medical and social services. Along with her husband, R. Sargent Shriver, she made the Special Olympics an international, annual event in order to encourage people with mental retardation to develop their skills and discover the joy of achievement. She emerges from these pages as a remarkable and dedicated advocate for people with developmental disabilities.
Shorter's account of mental retardation presents an unfamiliar view of the Kennedy family and adds a significant chapter to the history of disability in this country.
Madness and Enterprise reveals the economic norms embedded within psychiatric thinking about mental illness in the North Atlantic world. Over the course of the nineteenth century, various forms of madness were subjected to a style of psychiatric reasoning that was preoccupied with money. Psychiatrists across Western Europe and the United States attributed financial and even moral value to an array of pathological conditions, such that some mental disorders were seen as financial assets and others as economic liabilities. By turning to economic conduct and asking whether potential patients appeared capable of managing their financial affairs or even generating wealth, psychiatrists could often bypass diagnostic uncertainties about a person’s mental state.
Through an exploration of the intertwined histories of psychiatry and economic thought, Nima Bassiri shows how this relationship transformed the very idea of value in the modern North Atlantic, as the most common forms of social valuation—moral value, medical value, and economic value—were rendered equivalent and interchangeable. If what was good and what was healthy were increasingly conflated with what was remunerative (and vice versa), then a conceptual space opened through which madness itself could be converted into an economic form and subsequently redeemed—and even revered.
This book will be of great value to scholars in law and the mental health professions and to policy makers and the administrators of disability programs.
The economic cost of retardation measures in the billions each year and the human cost is incalculable. However, many forms of retardation can now be prevented medically and much is now known about how to help the retarded lead more normal and satisfactory lives. In Mental Retardation, Dr. Robert Edgerton provides an extraordinarily useful and humane guide to this new knowledge in the brief and readable format that has become a trademark of the Developing Child series.
The book begins with a clear review of what is known about the causes of retardation, ranging from genetic abnormalities to prenatal infection, malnutrition in early childhood, environmental toxins (such as lead paint), and poverty. Edgerton shows how many of these problems can be avoided by genetic counseling, improved prenatal care, and the elimination of environmental hazards. But he also goes on to consider the questions that inevitably arise when prevention fails and family and society must cope with a retarded child: What is the impact of the child on the family? Is care within the family preferable to institutionalization? How can schools best educate the retarded? Is "mainstreaming" sensible? And how far can the retarded adult go towards normal patterns of work and social life within the community?
Mental Retardation makes it clear that many of the problems of retardation are caused by the misunderstanding and intolerance of a society like our own, which places extraordinary emphasis on mental ability and its measurable manifestations: school achievement and IQ. It is just this sort of intolerance and misunderstanding that this book does so much to dispel.
Carey addresses the segregation of people with intellectual disabilities in schools and institutions along with the controversies over forced sterilization, eugenics, marriage and procreation, and protection from the death penalty. She chronicles the rise of the parents’ movement and the influence of the Kennedy family, as well as current debates that were generated by the impact of the Americans with Disabilities Act passed in 1990.
Presenting the shifting constitutional and legal restrictions for this marginalized group, Carey argues that policies tend to sustain an ambiguity that simultaneously promises rights yet also allows their retraction.
For more than forty years, professionals in the field of disability studies have engaged in debates over the use of aversive interventions (such as electric shock) like the ones used at the Judge Rotenberg Center. Advocates and lawyers have filed complaints and lawsuits to both use them and ban them, scientists have written hundreds of articles for and against them, and people with disabilities have lost their lives and, some would say, lived their lives because of them. There are families who believe deeply in the need to use aversives to control their children’s behavior. There are others who believe the techniques used are torture. All of these families have children who have been excluded from numerous educational and treatment programs because of their behaviors. For most of the families, placement at the Judge Rotenberg Center is the last resort.
This book is a historical case study of the Judge Rotenberg Center, named after the judge who ruled in favor of keeping its doors open to use aversive interventions. It chronicles and analyzes the events and people involved for over forty years that contributed to the inability of the state of Massachusetts to stop the use of electric shock, and other severe forms of punishment on children and adults with disabilities. It is a long story, sad and tragic, complex, filled with intrigue and questions about society and its ability to protect and support its most vulnerable citizens.
Drawing on the controversial case of “Ashley X,” a girl with severe developmental disabilities who received interventionist medical treatment to limit her growth and keep her body forever small—a procedure now known as the “Ashley Treatment”—Reconsidering Intellectual Disability explores important questions at the intersection of disability theory, Christian moral theology, and bioethics.
What are the biomedical boundaries of acceptable treatment for those not able to give informed consent? Who gets to decide when a patient cannot communicate their desires and needs? Should we accept the dominance of a form of medicine that identifies those with intellectual impairments as pathological objects in need of the normalizing bodily manipulations of technological medicine?
In a critical exploration of contemporary disability theory, Jason Reimer Greig contends that L'Arche, a federation of faith communities made up of people with and without intellectual disabilities, provides an alternative response to the predominant bioethical worldview that sees disability as a problem to be solved. Reconsidering Intellectual Disability shows how a focus on Christian theological tradition’s moral thinking and practice of friendship with God offers a way to free not only people with intellectual disabilities but all people from the objectifying gaze of modern medicine. L'Arche draws inspiration from Jesus's solidarity with the "least of these" and a commitment to Christian friendship that sees people with profound cognitive disabilities not as anomalous objects of pity but as fellow friends of God. This vital act of social recognition opens the way to understanding the disabled not as objects to be fixed but as teachers whose lives can transform others and open a new way of being human.
Thomas Walz tells the story of Bill Sackter, a man who spent nearly half a century in a Minnesota mental institution and emerged to blossom into a most unlikely celebrity. Bill Sackter was committed to the Faribault State Hospital at the age of seven, there to remain until he was in his fifties. At the time of his commitment, Bill’s father had recently died; thus his sole contact with his family came through rare letters from his mother.
Some years after his discharge from Faribault as a result of the movement to deinstitutionalize the mentally ill in the 1960s, Bill enjoyed a serendipitous encounter with a young college student and part-time musician, Barry Morrow. Bill became part of the Morrow family and a regular in Morrow’s music group. When Morrow accepted a job at the School of Social Work at the University of Iowa, Bill followed him to Iowa City and was put in charge of a small coffee service.
Bill became an important part of the University of Iowa community, and Wild Bill’s Coffeeshop developed into an institution. A cheerful man of great good will who was a harmonica virtuoso, Bill began to inspire affectionate legends, and his life as a celebrity began in earnest. He was named Iowa’s Handicapped Person of the Year in 1977, and two television movies were made about his life—Bill, which earned Emmy awards for cowriter Barry Morrow and Mickey Rooney (as Bill) in 1981, and Bill on His Own in 1983. Years later, Morrow would earn an Oscar for his script of Rain Man.
Through vignettes ranging from hilarious to near tragic. Walz reveals a remarkable human being. An account of Bill's life in an institution is necessarily part of the story, but there is much more: Bill’s role in helping a young child recover from a coma, his menagerie of friends, his love for a pet parakeet, his late-life Bar Mitzvah, his failure as a woodworker, his success as Santa, and his dignified death at the age of seventy.
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