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The Woman Who Walked into the Sea

The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease

Alice Wexler
Copyright Date: 2008
Published by: Yale University Press
Pages: 288
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  • Book Info
    The Woman Who Walked into the Sea
    Book Description:

    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.

    eISBN: 978-0-300-15177-0
    Subjects: History, Public Health

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
    (pp. ix-xii)
    Nancy S. Wexler

    Alice Wexler brings a unique perspective to understanding the nineteenth-century families affected with what we today know as Huntington’s disease (HD) and they called St. Vitus’s dance or the magrums. Alice and I are their sisters. We watched our own mother be undone by Huntington’s, which causes uncontrollable movements in all parts of the body, cognitive decline, and emotional distress. It is irrevocably fatal over ten to twenty years. It is also hereditary. Alice and I each have a 50–50 chance of inheriting it ourselves.

    Alice’s empathy with the families affected by St. Vitus’s dance gives a novel slant...

    (pp. xiii-xvi)
    (pp. xvii-xxiv)

    In the seaside town of East Hampton, New York, at the far eastern end of Long Island, in a cemetery shadowed by an old windmill, a simple slate gravestone marks the life and death of Stafford Hedges, son of a woman named Phebe Hedges, who walked into the sea and drowned on a summer night in 1806. A few blocks away on East Hampton’s Main Street stands an old house facing south, where a family of physicians called the Huntingtons lived and practiced medicine for almost the entire course of the nineteenth century, counting among their patients some like Stafford...

  6. Family/Community

    • 1 The Death of Phebe Hedges
      (pp. 3-21)

      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.” The great English preacher George Whitefield had traveled all through New England and New York that year, stirring up revivals everywhere he went, including East Hampton, this triracial farming and fishing town founded by Puritans at the eastern tip of Long Island, a region that had been home to the native Montauks for thousands of years....

    • 2 The Social Course of St. Vitus’s Dance
      (pp. 22-54)

      In his studies of disorders such as epilepsy and depression, the medical anthropologist Arthur Kleinman theorizes that disease possesses a social course, a term that he contrasts with “the biomedical idea of the natural course” of the disease. According to Kleinman, the social course of a condition “is organized as much by what matters for the participants in a local world as it is by the biology of the condition.” Although biology sets limits and boundaries, “the microcultural worlds in which patients and families engage in everyday social activities” are “the only valid grounds for understanding illness and treatment.” In...

  7. Community/Medicine

    • 3 Inventing Hereditary Chorea
      (pp. 57-93)

      In the annals of Huntington’s disease, George Huntington has long been an iconic figure, his photograph featured in books and articles, his 1872 paper “On Chorea” memorialized in a centennial symposium in 1972, his life a topic for papers and Web sites. “In the whole range of descriptive nosology there is not, to my knowledge, an instance in which a disease has been so accurately and fully delineated in so few words,” wrote William Osler in his 1893 paper on chorea. “No details were given; the original cases were not even (nor have they been) described, but to Huntingdon’s [sic]...

    • 4 Chorea and the Clinical Gaze
      (pp. 94-122)

      In 1880, eight years after George Huntington’s paper appeared, A. Harbinson, an obscure assistant medical officer at the county asylum in the northern English city of Lancaster, published a paper on what he called multiple sclerosis, with some distinctly unusual features for this disease. “A peculiarly hereditary form of this complaint associated with chorea has, during the past few years, come under my notice in three instances,” he wrote. Harbinson traced “sclerosis with chorea” through five generations in two related families he had encountered at the asylum. These patients, he wrote, suffered from restless, twitching, jerking motions of the limbs—...

  8. Medicine/Eugenics/Memory

    • 5 The Eyes of Elizabeth B. Muncey, M.D.
      (pp. 125-150)

      How disease is imagined, and how sufferers are portrayed, helps shape the experience of illness. As Susan Sontag famously demonstrated, metaphors have material effects. The association of HIV/AIDS with “sinful” sexuality helped delay the recognition of a global epidemic and still thwarts strategies for prevention. Stereotypes of the old man with Alzheimer’s disease as an “empty shell” and images of the old woman who has lost her “self ” perpetuate indifference and neglect of the elderly, fanning the dread of those facing a diagnosis. Popular images of the disabled as villains, monsters, and freaks spawn self-hatred and self-doubt among those...

    • 6 Myths of Origins and Endings
      (pp. 151-186)

      Among all the papers to come out of the Eugenics Record Office, “Huntington’s Chorea in Relation to Heredity and Eugenics,” published in 1916, stands almost alone in retaining its reputation as a worthwhile scientific contribution, for its analysis of dominant inheritance in nearly a thousand alleged “choreics” and its documentation of the variability of symptoms and age of onset. While Davenport’s “flawed” conclusions have been criticized, the data on which these conclusions rest have largely gone unquestioned. Yet this lack of scrutiny may say more about geneticists’ and clinicians’ lack of historical memory than about the scientific merits of the...

  9. List of Abbreviations
    (pp. 187-188)
  10. Notes
    (pp. 189-242)
  11. Index
    (pp. 243-253)