This work presents a groundbreaking medical and social history of a devastating hereditary neurological disorder once demonized as 'the witchcraft disease'. 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 neighbours called St. Vitus' dance. Doctors later spoke of Huntington's chorea, and today it is kwn 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 kwledge 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 techlogies, this history offers insights into the social contexts of medical and scientific kwledge, as well as the legacy of eugenics in shaping both the kwledge and the lived experience of this disease.
Alice Wexler is a research scholar at the UCLA Center for the Study of Women and the author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research.