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When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind, and mood her neighbors called St.Vitus's dance. Doctors later spoke of Huntington's chorea, and today it is known as Huntington's disease. This book is the first history of Huntington's in America. Starting with the life of Phebe Hedges, Alice Wexler uses Huntington's as a lens to explore the changing meanings of heredity, disability, stigma, and medical knowledge among ordinary people as well as scientists and physicians. She addresses these themes through three overlapping stories: the lives of a nineteenth-century family once said to "belong to the disease"; the emergence of Huntington's chorea as a clinical entity; and the early-twentieth-century transformation of this disorder into a cautionary eugenics tale. In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.… (más)
Although this book is ostensibly focuses on the intellectual and social history of Huntington's Chorea, it also contributes to a broader history of how evolving concepts of heredity, along with highly stigmatizing eugenic theory and policy, transformed the experience of genetic illness in the modern era.
Información procedente del conocimiento común inglés.Edita para encontrar en tu idioma.
Why resurrect it all now. From the Past. History, the old wound. The past emotions all over again. To confess to relive the same folly. To name it now so as not to repeat history in oblivion. To extract each fragment by each fragment from the word from the image another word another image the reply that will not repeat history in oblivion.
—Theresa Hak Kyung Cha, Dictee
Dedicatoria
Información procedente del conocimiento común inglés.Edita para encontrar en tu idioma.
For the memory of my father, Milton Wexler, 1908-2007
Primeras palabras
Información procedente del conocimiento común inglés.Edita para encontrar en tu idioma.
In the year of her birth, 1764, a revival swept the town, the people—mainly the young people—gathering day after day in the house of the minister, the Reverend Samuel Buell, and "making the most mournful declarations of their exceeding sinfulness before God."
Citas
Últimas palabras
Información procedente del conocimiento común inglés.Edita para encontrar en tu idioma.
Later, when I am no longer surrounded by people with Huntington's, I look at the till bodies near me and—just for an instant—I find something missing.
When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind, and mood her neighbors called St.Vitus's dance. Doctors later spoke of Huntington's chorea, and today it is known as Huntington's disease. This book is the first history of Huntington's in America. Starting with the life of Phebe Hedges, Alice Wexler uses Huntington's as a lens to explore the changing meanings of heredity, disability, stigma, and medical knowledge among ordinary people as well as scientists and physicians. She addresses these themes through three overlapping stories: the lives of a nineteenth-century family once said to "belong to the disease"; the emergence of Huntington's chorea as a clinical entity; and the early-twentieth-century transformation of this disorder into a cautionary eugenics tale. In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.
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