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 hereditary disorder of movement, mind, and mood her neighbors called St. Vitus’s dance. Although East Hampton is known more for its celebrities than its contributions to medical science, this book shows how local families and a community helped to shape new medical knowledge and define the clinical entity known initially as Huntington’s chorea—today called Huntington’s disease—after the East Hampton physician George Huntington who described it in 1872.
Starting with the life of Phebe Hedges, Alice Wexler uses Huntington’s as a lens to explore heredity, disability, and medical knowledge among lay people as well as scientists and physicians. She addresses these themes through three overlapping stories: the lives of nineteenth century families who, despite “that disorder,” were integrated and sometimes prominent in their community; the emergence of Huntington’s chorea as a new paradigm of heredity; 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 lived experience of this disease.
“This book is an engaging chronicle of how the lived experience of illness in a family and community transforms over centuries into an intensely monitored and medicalized hereditary disease. Wexler does what historians do best: she folds what we take now to be a straightforward phenomenon, Huntington’s disease, back into the story of its making. By doing so, she tells us something profound about how we imagine ourselves and how we are connected to one another.”—Rosemarie Garland-Thomson, author of Extraordinary Bodies: Figuring Physical Disability in American Literature and Culture
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.
ISBN 978-0-300-10502-5 280 pp.
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It was recently announced that Alice Wexler’s book, “The Woman Who Walked Into the Sea,” has won the 2009 American Medical Writers Association Medical Book Award in the Healthcare Professionals (non-physician) category.
Michael Crichton (award-winning author of such classics as “Sphere,” “The Terminal Man,” “Jurassic Park,” and “Five Patients”) and Dr Timothy Johnson (medical editor for ABC News, founding editor of the Harvard Medical School Health Letter, and coauthor of “Let’s Talk”) are just 2 of the numerous authors who have received the prestigious AMWA Medical Book Award. The book awards were established more than 30 years ago by the American Medical Writers Association (AMWA) to recognize the best of the best in nonfictional and fictional medical writing.
“This is a remarkable story of ‘St. Vitus’s Dance’ (Huntington’s Chorea) from many perspectives: personal, historical and social. Its meticulous history, drawn from archives and personal experience details how this late-onset hereditary disease was viewed not only medically but personally and socially by family members, neighbors and friends of afflicted individuals. This is a must read for anyone interested in the social history and policy surrounding hereditary disease.”
—Garland Allen, Washington University in St. Louis
Click below to listen to Alice's October 1, 2008 interview on NPR.
COME MEET ALICE WEXLER, AMERICAN MEDICAL WRITERS ASSOCIATION BOOK AWARD WINNER, IN EAST HAMPTON – AUGUST 8, 2009
On August 8, 2009, Alice Wexler and “The Woman Who Walked into the Sea” will be among the featured authors and books at Authors Night at the East Hampton Library, East Hampton, NY. The event is a benefit for the East Hampton Library, which has a wonderful Long Island Collection of local manuscripts and photographs.
East Hampton was home, in the 19th century, to George Huntington and his father and grandfather, who practiced medicine in the town. East Hampton was also home to the families who made George Huntington's discovery possible, and who are the focus of Alice's book.
There is a reception under a tent and dinner parties in peoples' homes afterwards, where an author or two is served up for dessert!