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Social Sciences > Deaf and Disability Studies
Drawn from the Genetics, Disability and Deafness Conference at Gallaudet University in 2003, this trenchant volume brings together 13 essays from science, history, and the humanities, history and the present, to show the many ways that disability, deafness, and the new genetics interact and what that interaction means for society. Pulitzer-prize-winning author Louis Menand begins this volume by expressing the position shared by most authors in this wide-ranging forum—the belief in the value of human diversity and skepticism of actions that could eliminate it through modification of the human genome. Nora Groce creates an interpretive framework for discussing the relationship between culture and disability. From the historical perspective, Brian H. Greenwald comments upon the real “toll” taken by A. G. Bell’s insistence upon oralism, and Joseph J. Murray recounts the 19th century debate over whether deaf-deaf marriages should be encouraged. John S. Schuchman’s chilling account of deafness and eugenics in the Nazi era adds wrenching reinforcement to the impetus to include disabled people in genetics debates. Mark Willis illustrates the complexity of genetic alterations through his reaction to his own genetic makeup, in that he is happy to combat his heart disease with genetic tools but refuses to participate in studies about his blindness, which he considers a rich variation in human experience. Anna Middleton describes widely reported examples of couples attempting to use genetic knowledge and technology both to select for and against a gene that causes deafness. Chapters by Orit Dagan, Karen B. Avraham, Kathleen S. Arnos, and Arti Pandya elucidate the promise of current research to clarify the complexity and choices presented by breakthroughs in genetic engineering. In his essay on the epidemiology of inherited deafness, geneticist Walter E. Nance emphasizes the importance of science in offering individuals knowledge from which they can fashion their own decisions. Christopher Krentz reviews past and contemporary fictional accounts of human alteration that raise moral questions about the ever-continuing search for human perfection. Michael Bérubé concludes this extraordinary collection with his forceful argument that disability should be considered democratically in this era of new genetics to ensure the full participation of disabled people themselves in all decisions that might affect them.
A Social History of the Belchertown State School for the Feeble-Minded
During much of the twentieth century, people labeled “feeble-minded,” “mentally deficient,” and “mentally retarded” were often confined in large, publicly funded, residential institutions located on the edges of small towns and villages some distance from major population centers. At the peak of their development in the late 1960s, these institutions—frequently called “schools” or “homes”—housed 190,000 men, women, and children in the United States. 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.
"Well written and fascinating to read. This fine book takes a large step in...contributing to the only slowly dawning awareness of the general public, and the health workers too, of the significance of chronic illness." â€”Anselm Strauss, University of California, San Francisco Based on in-depth interviews with eighty people who have epilepsy, this book gives a first-hand account of what it is like to cope with a chronic illness, while working, playing, and building relationships. The authors recount how people discover they have epilepsy and what it means; how families respond to someone labeled "epileptic"; how seizures affect a person's sense of self and self-control. Epilepsy patients explain what they want from their doctors and why the medication practices they develop may not coincide with "doctor's orders." The variety of experiences of epilepsy is suggested both by the interviews and by the range of terms for seizuresâ€”Petit Mal, Grand Mal, auras, fits, absences. The principal difficulty for many people with epilepsy is not the medical condition but the social stigma. A person with epilepsy has to cope with discrimination in obtaining a job, insurance, or a driver's license, and he or she may be cautious about revealing this "disabling" condition to an employer or even a spouse. People with epilepsy may manage information about themselves and their "lapses" and look for "safe places" like restrooms where they can be alone should a seizure begin. Many of those interviewed complained of overreactions to seizures by colleagues or bystanders: epilepsy patients were embarrassed at having provoked a public crisis or were annoyed at waking up in a hospital emergency room. This is a book for people who have epilepsy, for their families and friends; for health care professionals who deal with chronic illnesses; and for students of medical sociology and the sociology of deviance. "For anyone who would like to 'get inside' the experience of having epilepsy, this book is probably as close as one can come." â€”Epilepsia "In dispelling the notion that 'the person is the illness,' these interviews with 80 individuals reveal that those suffering from epilepsy have learned to accept it as merely another facet of their lives. A valuable contribution for those with epilepsy, for their family and friends, for medical personnel, and for the general public." â€”Booklist "...carefully outlined and clearly written.... Those affected by chronic conditions may find the book most helpful.... Family and helping professionals may discover new insights.... Social scientists, especially those interested in chronic illnesses, will benefit from the research conclusions and suggestions for further research." â€”Medical Anthropology Quarterly "It represents an important advance in the medical sociology literature as well as a contribution to qualitative sociology. I think that the book should become a contemporary classic in medical sociology." â€”Qualitative Sociology "...an important contribution.... In focusing on what it is like to have epilepsy in this society, Schneider and Conrad have reversed an earlier concern for the medicalization of deviance, opting in this work for an understanding of the stigmatization of illness." â€”Contemporary Sociology
The Third Ear in Experimental, Deaf, and Multicultural Theater
Gaillard crossed the Atlantic only a few weeks after the United States entered World War I. In his writings, he reports the efforts of American deaf leaders to secure employment for deaf workers to support the war effort. He also witnesses spirited speeches at the National Association of the Deaf convention decrying the replacement of sign language by oral education. Gaillard also depicts the many local institutions established by deaf Americans, such as Philadelphia’s All Souls Church, founded in 1888 by the country’s first ordained deaf pastor, and the many deaf clubs established by the first wave of deaf college graduates in their communities. His journal stands as a unique chronicle of the American Deaf community during a remarkable era of transition.
Hearing People in Deaf Families
The newest entry in the Sociolinguistics in Deaf Communities series explores the richness and complexity of the lives of hearing people in deaf families. Along with their own contributions, volume editors Michele Bishop and Sherry L. Hicks present the work of an extraordinary cadre of deaf, hearing, and Coda (children of deaf adults) researchers: Susan Adams, Jean Andrews, Oya Ataman, Anne E. Baker, Beppie van den Bogaerde, Helsa B. Borinstein, Karen Emmorey, Tamar H. Gollan, Mara Lúcia Masutti, Susan Mather, Ronice Müller de Quadros, Jemina Napier, Paul Preston, Jennie E. Pyers, Robin Thompson, and Andrea Wilhelm. Their findings represent research in a number of countries, including Australia, Brazil, England, Germany, the Netherlands, and the United States. HEARING, MOTHER FATHER DEAF: Hearing People in Deaf Families includes a comprehensive description of the societal influences at work in the lives of deaf people and their hearing children, which serves as a backdrop for the essays. The topics range from bimodal bilingualism in adults to cultural and linguistic behaviors of hearing children from deaf families; sign and spoken language contact phenomena; and to issues of self-expression, identity, and experience. A blend of data-based research and personal writings, the articles in this sociolinguistic study provide a thorough understanding of the varied experiences of hearing people and their deaf families throughout the world.
The story of how American Sign Language (ASL) came to be is almost mythic. In the early 19th century, a hearing American reverend, Thomas Hopkins Gallaudet, met a Deaf French educator, Laurent Clerc, who agreed to come to the United States and help establish the first school in America to use sign language to teach deaf children. The trail of ASL’s development meanders at this point. No documentation of early ASL was published until the late 19th century, almost seven decades after the school’s founding. While there are many missing pieces in the history of America’s sign language, plenty of data exist regarding ASL etymology. This book is the first to collect all known texts featuring illustrations of early ASL and historical images of French Sign Language―langue des signes française (LSF)―and link them with contemporary signs. Through rigorous study of historical texts, field research in communities throughout France and the U.S., and in-depth analysis of the cultural groups responsible for the lexicon, authors Emily Shaw and Yves Delaporte present a compelling and detailed account of the origins of over 500 ASL signs, including regional variations. Organized alphabetically by equivalent English glosses, each sign is accompanied by a succinct description of its origin and an LSF sign where appropriate. Featuring an introductory chapter on the history of the development of ASL and the etymological methodology used by the authors, this reference resource breaks new ground in the study of America’s sign language.
150 Years of a Deaf American Institution
On April 4,1864, President Abraham Lincoln and the United States Congress put into effect legislation authorizing the granting of collegiate degrees by the Columbia Institution for the Instruction of the Deaf and Dumb and the Blind. At this moment, what became Gallaudet University began a century and a half of offering a collegiate liberal arts education to deaf and hard of hearing students. David F. Armstrong’s The History of Gallaudet University: 150 Years of a Deaf American Institution chronicles its development into a modern, comprehensive American university through more than 250 photographs and illustrations. At first a tiny college of fewer than 200 students, Gallaudet’s growth paralleled the emergence of the American Deaf Community and the history of the nation in general. In the same way that the country’s land-grant universities brought higher education to more American students than ever before, Gallaudet offered the same opportunities to deaf students for the first time. Gallaudet mirrored other institutions in addressing major issues of the time, from legislated segregation to the Civil Rights movement that inspired the struggle by deaf people to gain control of the governance of their university. Most critically, this volume details poignantly the evolution of a signed language, American Sign Language, as a language of scholarship at Gallaudet during a time when its use in educational institutions was largely discouraged or prohibited. Through story and image, it traces the historic path that Gallaudet traveled to be recognized as the finest institution of higher education for deaf people throughout the world.
As a significant term, inclusion came into use relatively recently in the long history of special education in the United States. Since the 1800s, when children with disabilities first were segregated for instruction in public schools, professionals and parents have called for more equitable, “normal” treatment of these students, and for closer contact with their nondisabled peers. Through the years, the central issues of the discussions between educators and parents have focused on who should be considered disabled and who should bear responsibility for planning and providing for their education. The History of Inclusion in the United States traces the antecedents of this ongoing debate to answer questions about what inclusion is, how it came to be, and where it might go. In this comprehensive study, author Robert L. Osgood reveals how the idea of inclusion has evolved into broader realms of thought and practice. In its earliest manifestations, educators dwelled upon the classroom setting itself, wondering whether “disabled” children belonged there; if not, why not; and if so, how this could be accomplished? By the late 1960s, the scope of the discussion had shifted to assess the comprehensive structures of special education and its relationship with general education. The History of Inclusion seamlessly follows this progression into the present decade, in which current educational policy questions the need for any sort of separate “special education” in principle and structure.
From Isolation to Integration
This comprehensive volume examines the facts, characters, and events that shaped this field in Western Europe, Canada, and the United States. From the first efforts to teach disabled people in early Christian and Medieval eras to such current mandates as Public Law 94-142, this study breaks new ground in assessing the development of special education as a formal discipline. The History of Special Education presents a four-part narrative that traces its emergence in fascinating detail from 16th-century Spain through the Age of Enlightenment in 17th-century France and England to 18th-century issues in Europe and North America of placement, curriculum, and early intervention. The status of teachers in the 19th century and social trends and the movement toward integration in 20th century programs are considered as well.
Deaf Americans in School and Factory, 1850-1950
The working lives of Deaf Americans from the mid-1850s to the post-World War II era depended upon strategies created by Deaf community leaders to win and keep jobs through periods of low national employment as well as high. Deaf people typically sought to de-emphasize their identity as sign language users to be better integrated into the workforce. But in his absorbing new book Illusions of Equality, Robert Buchanan shows that events during the next century would thwart these efforts. The residential schools for deaf students established in the 19th century favored a bilingual approach to education that stressed the use of American Sign Language while also recognizing the value of learning English. But the success of this system was disrupted by the rise of oralism, with its commitment to teaching deaf children speech and its ban of sign language. Buchanan depicts the subsequent ramifications in sobering terms: most deaf students left school with limited educations and abilities that qualified them for only marginal jobs. He also describes the insistence of the male hierarchy in the Deaf community on defending the tactics of individual responsibility through the end of World War II, a policy that continually failed to earn job security for Deaf workers. Illusions of Equality is an original, edifying work that will be appreciated by scholars and students for years to come.