The Woman Who Walked into the Sea: Huntington’s and the Making of a Genetic Disease (review)

This book is a marvelous example of how a seemingly narrow topic can be used to illuminate much broader vistas of social and cultural history. Ostensibly, the book focuses on the social and intellectual history of the affliction known as the magrums or St. Vitus Dance in the small town of East Hampton, New York, through the nineteenth century; how it came to be widely known as Huntington’s Chorea; and its role in the eugenics movement. But through the careful and creative use of primary sources and a broad range of scholarship from a variety of disciplines, Wexler also makes important contributions to an understanding of the social experience of disease writ large, the emergence and significance of a genetic concept of heredity in nineteenth-century science and medicine, and the cultural implications of genetic knowledge in the modern world.

One of Wexler’s central arguments is that the social experience of disease is heavily influenced by local culture. She develops this argument through a careful study of how the town of East Hampton treated the family and descendents of Phebe Hedges, a forty-one-year-old East Hampton woman who, facing the early signs of the disorder that was already at an advanced stage in her mother, killed herself by walking into the sea. Wexler finds that, despite the notoriety of Hedges’s suicide and the attention it brought to the presence of a dreaded hereditary condition in her family, the citizens of East Hampton did not significantly marginalize the family, elevating several of them to positions of respect and authority in town and church affairs. Wexler contrasts the acceptance found in East Hampton with other communities in which families with the disease were stigmatized and excluded from full participation in public life, and argues that the stability, relative homogeneity, and religious traditions created a culture more prone to accept disability.

Although its clinical symptoms and tendency to run in families had been recorded in the medical literature decades earlier, Huntington’s Chorea emerged as a distinct hereditary disease entity only in the late nineteenth century. Wexler argues that George Huntington and the other physicians who contributed to the concept shared two characteristics that allowed them to recognize and describe hereditary chorea. First, they accepted a more narrowly focused idea of heredity as the transmission of biological traits at birth, which in the nineteenth century was replacing an older metaphoric notion of heredity as the familial transmission of any biological, social, or psychological qualities. Second, they all had social experience with the disorder, living or traveling through towns and villages with highly visible affected families, experience that was crucial to their recognition of the significance and familial pattern of the symptoms.

Perhaps the most provocative argument Wexler advances in the book concerns the influence of eugenics on the social experience of having Huntington’s. Wexler uses the field notes of Dr. Elizabeth Muncey, who worked in the early twentieth century for Charles Davenport in the Eugenics Record Office, to show that the eugenics movement intensified the stigmatization of Huntington’s. Moreover, though Muncey and Davenport’s research had been discredited in scientific circles by the 1940s, Wexler shows that the hostile representations of people with Huntington’s it generated remained influential in the United States well into the 1960s.

Although Wexler’s arguments are bold, she judiciously notes the limitations of her sources and the interpretive uncertainties that inevitably remain. Her book is a model of careful and creative scholarship that deserves a wide readership.