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Forty year old Phebe Hedges walked into the sea at East Hampton, New York, and drowned one summer night in 1806. She'd spent several anguished days contacting and recontacting Dr Huntington for her increasingly disturbing symptoms. His remedies of spirits of turpentine, chamomile flowers, chalybeate powder number twelve, laxative pills, digitalis, and a tincture of valerian were not sufficient in ameliorating her inherited neuro-psychological disease. This disease involves intrusive and awkward disturbances of movement: twitches and grimaces, apathy, irritability, impairment of judgment and memory, increasingly mushy speech and personality changes. It is a fairly common devastating disease known throughout the world and in all racial and ethnic groups. It comes rich with preconception, prejudice, myth and narrative. It is these that the author sought to explore in this rich cultural history.
Phebe Hedge's story is but one in this social history of a disease and one explored by Alice Wexler as part of the author's search for meaning. Wexler came to it after her earlier autobiographical account of Huntington's disease, Mapping Fate: A Memoir of Family, Risk and Genetic Research, that traces the afflicted lives in her own family.
This current book is at once fascinating and a bit tedious. Tedious, because of its somewhat clichéd academic jargon, and fascinating for its multiple layers of narrative. The story of Huntington's Disease wends through claims of witchcraft, eugenics and a medicine trying to make sense of its profile of symptoms. Wexler situates her exploration in the place of East Hampton, and searches meaning through the lives of ordinary people and their healers, including father and son Drs Huntington and Elizabeth B. Muncey, M.D. Wexler, a UCLA academic, takes the reader through the changing meanings of heredity, disability, stigma and medical knowledge, having as her compass point the awareness that at the heart of these are cultural and philosophical ideas that construct the way all these are thought about. She notes that the earlier ways of viewing Huntington's, and other genetic diseases, were constrained by the prevailing political and exclusivist ideas of eugenics and how biomedical science, feminism, and the civil rights movements changed that. She also observes that as more people afflicted by such diseases write about their conditions the better informed medical knowledge becomes.
A recent reviewer called the book groundbreaking; it isn't. Its formula is well known in the history of medicine and disability. What is new, however, is that the book is a first on the social history of those afflicted by Huntington's Disease in America. This is a book that informs, critiques, analyzes, and conceptualizes, and as such would be excellent in a specialist academic library.
© 2009 Elizabeth McCardell
Elizabeth McCardell, BA, BA (Hons), M. Counselling, PhD, Independent scholar, Australia.
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