Carville: Remembering Leprosy in America (review)

In this remarkable book, the English professor and folklorist Marcia Gaudet documents the culture of twentieth-century leprosy victims in the United States. She begins with the proposition that "any culture that is isolated . . . is likely to be rich in traditional folkloric material—narratives, customs, ritual, artifacts" (p. 22), and then gleans from her treasure of interviews, books, and records an account of the folkloric culture of the nation's leprosarium in Carville, Louisiana (1921–99). She intricately examines the culture to understand the individuals who spent some or all of their lives incarcerated for having a disease. Her discovery, and ours, is that "through their memory and narratives, we see their very human quest for identity and their survival with dignity and grace" (p. 24).

Carville begins with a historic portrayal. Gaudet traces events that led the government to segregate leprosy victims. She has the history right, and she skillfully depicts it. She then turns briefly, perhaps too briefly for those unacquainted with folklore, to an examination of the role of narratives, customs, rituals, and artifacts in understanding culture. Six discussions, three original and three previously published, follow. The discussions include narratives of diagnosis and admission, escapes, revealing the truth, Mardi Gras, cemeteries, and recollections of descendants. Each is richly illustrated and analyzed. The first, narratives of the trauma of diagnosis and admission to Carville, is powerful. One patient recounts her diagnosis, noting that "if I had been told I would die on the morrow I doubt if the shock would have been so great, in fact death would have seemed simple by comparison" (p. 31). Unlike many traumas, Carville traumas continued, could not be repressed, and were supported by a community of fellow sufferers.

Previously published discussions of escape, revealing the truth, and Mardi Gras are adequately integrated into the book, although at times the seams show. Gaudet reports tales of "abscondments" (the patients' preferred term) from Carville, including escapes of couples wishing to marry, young men desiring a night on the town, and groups leaving routinely to use their season tickets to the Louisiana State University football games. These escape stories allowed the patients to justify their departures (they were not really very contagious) and to laugh at the society that irrationally feared leprosy. The chapter on revealing the truth—telling others that you have leprosy—includes an account of one patient's experiences in a bar; that story alone makes the book worth reading and exemplifies the techniques that patients developed to fit into life outside. The Mardi Gras chapter contains moving narratives of this annual celebration, which required masks and thus allowed patients to feel normal for a brief moment.

The final chapters center around Carville's cemetery and the legacy of stories left to descendants of victims. While the earlier chapters are rich in narratives, Gaudet finds only the "silence of their gravestones" (p. 166) and the "absence of story" in family narratives (p. 179). Little is revealed by Carville cemetery—generally only patient numbers and dates of death. Likewise, there is only sparse information in oral accounts, letters, and diaries handed down to descendants. While the paucity of stories could be seen as a weakness, Gaudet uses these empty spots to demonstrate the power of the earlier narratives and the void that silence, however imposed, made in the lives of patients and our understanding of their experiences.

Carville tells another side of what is usually depicted as a scientific battle. It should be required reading for scientists, physicians, and policymakers, who should never forget that disease victims are "human beings, like everyone else" (p. 183). The narratives, so artfully woven together by Gaudet, make that point crystal clear.