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Eradicating deafness?

Genetics, pathology, and diversity in twentieth-century America

By Marion Andrea Schmidt

Eradicating deafness?
Hardcover

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Book Information

  • Format: Hardcover
  • ISBN: 978-1-5261-3817-0
  • Pages: 216
  • Publisher: Manchester University Press
  • Price: £80.00
  • Published Date: April 2020
  • BIC Category: MEDICAL / History, History of Medicine, History, HISTORY / United States / 20th Century, HISTORY / General, North America (USA & Canada), Humanities / 20th century history: c 1900 to c 2000, Society & social sciences / Disability: social aspects, Medicine / History of medicine
  • Series: Disability History

Description

Is deafness a disability to be prevented or the uniting trait of a cultural community to be preserved? Combining the history of eugenics and genetics with deaf and disability history, this book traces how American heredity researchers moved from trying to eradicate deafness to embracing it as a valuable cultural diversity. It looks at how deafness came to be seen as a hereditary phenomenon at all, how eugenics became part of progressive reform at schools for the deaf, and how, from the 1950s on, more sociocultural approaches to disability and minority led to new cooperative projects between professionals and local signing deaf communities. Analysing the transformative effects of exchange between researchers and objects of research, this book offers new insight to changing ideas about medical ethics, reproductive rights, the meaning of scientific progress and cultural diversity.

Reviews

'Schmidt (Univ. of Göttingen Medical Center) documents the historical attempts to eradicate deafness genes through coercive and restrictive measures including marriage counseling and family planning practices in order to achieve "normalization," as well as the 20th-century embrace of biodiversity and of being Deaf as a situation entailing cultural/linguistic differences. In 1977 this reviewer sat in McCay Vernon's psychology class alongside Deaf classmates, whom he asked to reflect on their etiologies and family histories. Vernon's respect for Deaf culture and sign language informed his research in genetics and his genetic counseling practice, which aimed to provide self-knowledge as well as psychological and emotional support. Vernon's work, among others cited in this book, led the historic shift in perceptions, paradigms, and terminology about being Deaf, redirecting genetics research and genetic counseling. Prior to this shift, perceptions about genetics and deafness followed a pathological/curative paradigm. But the new sociocultural perspective surfaced and embraced both signing as a cultural practice and population diversity as a norm. Previously used terms, e.g., "risks" have now shifted to "chances," reducing the blame and stigma of this "disability." Genetic counseling now supports the client in deciding which services to use, which decision to take, and what is considered a pathological condition, along with providing access to appropriate information.'
--J. F. Andrews, emerita, Lamar University
Summing Up: Recommended. Graduate students, faculty, and professionals.
Reprinted with permission from Choice Reviews. All rights reserved. Copyright by the American Library Association.

'[...] this valuable work stands out in its nuanced exploration of the in-between places.'
Social History of Medicine

'A masterful study of the history of genetic deafness research, Eradicating Deafness? exemplifies how new historical perspectives can be developed by merging disability history with the history of science.'
European Journal for the History of Medicine and Health

Contents

Introduction: of races and genocides
1 The sciences of deafness: deaf people as objects of research, reform, and eugenics, 1900-1940
2 Concerned and puzzled: heredity research and counselling at the Clarke School, 1930-1960
3 Minorities and pathologies: psychogenetic counselling at the New York State Psychiatric Institute, 1955-1969
4 Preventing tragedy, negotiating normalcy: the changing meaning of Usher syndrome 1960-1980
5 Signing risk and chance: collaborating for culturally sensitive counselling, 1970-1990
Conclusion: from Bell to biodiversity
Bibliography
Index

Author

Marion Andrea Schmidt is a Research Associate at the Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen

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