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Alice R. Wexler
Bulletin of the History of Medicine 76.3 (2002) 495-527

Copyright © 2002 The Johns Hopkins University Press. All rights reserved.

SUMMARY:

The dominant historical narrative of Huntington's disease (Huntington's chorea) has portrayed the early American sufferers from this disorder as marginalized and vilified. This article argues, however, that afflicted families in East Hampton, New York—the site of George Huntington's mid-nineteenth-century observations—were mostly accepted and integrated within the community, some of them as members of the gentry and active participants in local governance. As descendants of early English settlers in this multiracial town, these white Presbyterian families, some of whose members were afflicted with what was locally called "St. Vitus's dance" or "that disorder," were always defined as "one of ours." While this fatal inherited neurological illness became more secret and hidden toward the end of the nineteenth century, this article suggests that it was larger cultural and social changes, rather than factors intrinsic to the disease, that led to the shift. The East Hampton story suggests the ways in which specific historical circumstances in a community may shape the social meanings of even so severe a disease as Huntington's, and that social integration of the afflicted families may have helped mitigate the suffering of the disease.

The Woman Who Walked into the Sea

On the morning of 10 June 1806, Jacob Smith (not his real name) of East Hampton, New York, awoke to discover his wife missing. He had come home the previous evening to find her "ironing clothes, and apparently in health." Leah Smith was a white woman of about forty-two, "much esteemed by her neighbors," the mother of several children. The Smiths were among the oldest and wealthiest families in East Hampton village, at the heart of East Hampton town, a collection of farming and fishing villages counting about 1,500 residents in 1800, including 119 African Americans, 68 slaves, and some 34 Montauk Indian families living in poverty at the edge of the villages. Founded by Puritans in the mid-seventeenth century, this deeply conservative, mostly Presbyterian town maintained strong New England traditions, despite its location in New York, at the far eastern end of Long Island, about a mile from the Atlantic shore. Both Smiths counted town founders among their ancestors. They were, in the language of a later local historian, "one of ours."

During the last two weeks of May, Leah Smith had sent for Dr. Abel Huntington, the new young physician in town, twice in one week. He had come to give her "advice," and then returned to bring her medicines, quite a few in fact: he prescribed chamomile flowers (often used as a tonic and antispasmodic), turpentine (a stimulant and laxative), and chalybeate powder number twelve (an iron supplement used as a tonic). But then she sent for him again, ten days later, on 7 June; this time he prescribed volatile tincture of digitalis, a stimulant, and also a box of laxative pills. If she confided any fears to her physician, he did not note it in his daybook; he merely recorded charges of sixty-three cents which her husband would later pay with "cash and tallow to balance."

 
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