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Remembering Leprosy in America

Publication Year: 2004

Mysterious and misunderstood, distorted by biblical imagery of disfigurement and uncleanness, Hansen's disease or leprosy has all but disappeared from America's consciousness. In Carville, Louisiana, the closed doors of the nation's last center for the treatment of leprosy open to reveal stories of sadness, separation, and even strength in the face of what was once a life-wrenching diagnosis. Drawn from interviews with living patients and extensive research in the leprosarium's archives, Carville: Remembering Leprosy in America tells the stories of former patients at the National Hansen's Disease Center. For over a century, from 1894 until 1999, Carville was the site of the only in-patient hospital in the continental United States for the treatment of Hansen's disease, the preferred designation for leprosy. Patients-exiled there by law for treatment and for separation from the rest of society-reveal how they were able to cope with the devastating blow the diagnosis of leprosy dealt them. Leprosy was so frightening and so poorly understood that entire families would suffer and be shunned if one family member contracted the disease. When patients entered Carville, they typically left everything behind, including their legal names and their hopes for the future. Former patients at Carville give their views of the outside world and of the culture they forged within the treatment center, which included married and individual living quarters, a bar, and even a jail. Those quarantined in the leprosarium created their own Mardi Gras celebrations, their own newspaper, and their own body of honored stories in which fellow sufferers of Hansen's disease prevailed over trauma and ostracism. Through their memories and stories, we see their very human quest for identity and endurance with dignity, humor, and grace. Marcia Gaudet is the Doris Meriwether/Board of Regents Professor of English at the University of Louisiana at Lafayette.

Published by: University Press of Mississippi


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pp. vii-viii

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pp. ix-x

Growing up, my daddy convinced me that Carville, Louisiana, was the best place in the entire world. He always made sure I remembered that we had the best climate, the best people, the best family, the best soil, the best peaches—the best everything. I wore my last name...

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pp. xi-xv

As a native of Louisiana, I first became aware of Carville and its people in association with election returns (always a colorful topic in this state). Carville is both the name of a small village along the Mississippi River in southern Louisiana and the popular designation

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1. Carville, Leprosy, and Real People: An Introduction to a Culture Apart

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pp. 3-24

Carville, Louisiana, has been associated with the care and treatment of leprosy patients for over a century. From 1894 to 1999, it was the site of the only in-patient hospital in the continental United States for the treatment of Hansen’s disease, the preferred designation for...

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2. “An Exile in My Own Country”: The Unspeakable Trauma of Entering Carville

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pp. 25-60

A diagnosis of leprosy was inevitably traumatic. Such a diagnosis was usually totally unexpected as well. Even when the diagnosis was not a complete surprise (because of the knowledge that other family members had the disease), it was still devastating. In such cases...

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3. “Through the Hole in the Fence”: Personal Narratives of Absconding from Carville

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pp. 61-87

Because there are so many misconceptions about leprosy patients, the sense of isolation continued for many of the older patients in the 1980s and 1990s, even though they were all there by choice. The continuing use of the term leper to denote an outcast from society was...

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4. Telling It Slant: Personal Narratives, Tall Tales, and the Reality of Leprosy

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pp. 88-115

For most people, the truth’s “superb surprise” of having someone say to them “I have leprosy” is more reality than they can accept or even fathom. Some people may not even be aware that Hansen’s disease still exists in...

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5. The World Downside Up: Mardi Gras at Carville

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pp. 116-146

Michel Foucault begins the first chapter of Madness and Civilization (1988) with this statement: “At the end of the Middle Ages, leprosy disappeared from the Western world.” He goes on to say...

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6. “Under the Pecans”: History and Memory in the Graveyard at Carville

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pp. 147-166

The National Hansen’s Disease Center at Carville had many of the marks and establishments of a typical community, and like other communities, it had a graveyard— a place to bury its deceased members. Unlike other...

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7. Remembering Leprosy: Postmemory and the Carville Legacy

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pp. 167-183

G. W. Long Hansen’s Disease Center at Carville officially closed in 1999. At the same time, the National Hansen’s Disease Program was relocated to Summit Hospital Complex in Baton Rouge, Louisiana. The...

Appendix A: Carville Death Records on Cemetery Marker

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pp. 184-188

Appendix B: Quotation from Plaque at Entrance to National Hansen’s Disease Museum at Carville

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pp. 189-190


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pp. 191-198

Sources Cited and Consulted

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pp. 199-212


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pp. 213-221

E-ISBN-13: 9781604736038
E-ISBN-10: 1604736038
Print-ISBN-13: 9781578066933
Print-ISBN-10: 157806693X

Publication Year: 2004