Carville: Remembering Leprosy in America 9781604736038, 1604736038

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Carville

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Carville @

REMEMBERING | LEPROSY IN AMERICA MARCIA GAUDET

| www.upress.state.ms.us | ; The University Press of Mississippi is a member of the

Association of American University Presses. |

noted ,

Photographs courtesy of Marcia Gaudet unless otherwise

Copyright © 2004 by University Press of Mississippi All rights reserved

Manufactured in the United States of America ,

I2 II 10090807060504 4321 CO

Library of Congress Cataloging-in-Publication Data

Gaudet. | |

Gaudet, Marcia G. Carville : remembering leprosy in America / Marcia p. cm. Includes bibliographical references and index. ISBN 1-5 7806-693-X (cloth : alk. paper)

1. National Hansen’s Disease Programs Center (U.S.|— History. 2. Leprosy—United States—Carville—History.

I. Title. |

RA644.L3G38 2004

—- 362,.196’998'00976344—dc22 20040089 § 2 British Library Cataloging-in-Publication Data available

For Irby

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Contents ix Foreword by James Carville

xi Preface

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

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

6I 3. “Through the Hole in the Fence” Personal Narratives of Absconding from Carville

88 4. Telling It Slant Personal Narratives, Tall Tales, and

| the Reality of Leprosy

116 5. The World Downside Up | Mardi Gras at Carville

{viii} Contents 147 | 6. “Under the Pecans”

| History and Memory in the a Graveyard at Carville

167 7. Remembering Leprosy Postmemory and the Carville Legacy

184 | Appendix A Carville Death Records on Cemetery Marker

189 Appendix B Quotation from Plaque at Entrance to National Hansen’s Disease

| ~ Museum at Carville

IOI Notes

213 Index

199 Sources Cited and Consulted

Foreword 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

with pride—pride that three generations of Carvilles, going back to my great-grandmother Octavia Duhon, provided our town with its postmaster, and then with its name. “Of any place that you could live in the world,”

my daddy would tell me, “you’re living right here in Carville, Louisiana.”

Of course, there was another population in Carville,

Louisiana. That was the folks at the Gillis W. Long -Hansen’s Disease Center. From 1894 until 1999, Carville was the home of the only in-patient hospital in the con-

tinental United States for the treatment of Hansen’s disease, the condition historically called leprosy.

The people who lived at the Center were the last - people in America to be formally and legally banished from society because of an illness.

| { ix }

{x} Foreword , Even though the condition that brought these people to Carville was devastating, the stories that came out of the Center were inspirational.

Through the gates of the Center came ravaged and diseased bodies, broken spirits, people stripped of all dig-

nity and hope. A lot of them had been subjected to the most vile and worst forms of humiliation, degradation, and outright stupidity that a society can heap on people it fears, and things it doesn’t understand. —

But once inside those gates, people began to gain strength, to heal, to find dignity and hope, and in many cases, love. Meanwhile, the dedicated physicians and researchers were also finding things—like the sulfone drugs and the multidrug treatment that today allow millions of people with Hansen’s to lead a near normal life.

And so, as I grew older, I was able to add another piece of evidence to my daddy’s claim that Carville was the best place in the world, and that is because our little

town in southern Louisiana became a model for the world, a place of hope, progress, and tolerance.

—JAMES CARVILLE

April 2, 2004 |

Preface 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 or euphemism for a facility established near the village in the late nineteenth century for the isolation and care of leprosy patients. After Carville patients obtained the right to register and vote in 1946, the hos-

pital had its own election precinct. On Election Day, the Carville precinct closed at 4:00 p.M., earlier than any other precinct and usually after all registered voters had voted. The results of the Carville precinct were the

first announced by the media in Louisiana. This was remarkable both because there was usually 100 percent voter turnout and also because the results were announced before other polls closed in Louisiana. Many in Louisiana regarded the Carville vote as an early predictor of election results. This announcement was typically followed in the media by a discussion of Carville and its resident patients. { Xi }

{xii} Preface | I grew up in a town along the Mississippi River about fifty miles south of Carville. In 1954, I became further aware of leprosy as a disease and of Carville’s role in the humane treatment of this illness when a former patient

from Carville, Johnny Harmon, moved to the town of Vacherie (near my hometown) and opened a photography business there. His wife, also a patient at Carville, was a

native of Vacherie. Though former patients who were released from Carville at that time were encouraged to be open about their illness with the belief that outsiders would accept them, the experience of the Harmons was a rare instance where a community actually did accept former patients without ostracism. A local physician and

his wife, Dr. and Mrs. Stephen Campbell, were among the first to have their family’s photographs taken by Harmon. Photographs of Dr. Campbell’s five daughters were displayed in the shop window. Harmon established

a successful business, both as a studio photographer and also as a wedding photographer, photographing over seven hundred weddings in the area, including my brother’s wedding to Claire Campbell. My acquaintance

with the Harmons’ circumstances certainly broadened and enlightened my understanding of people with leprosy—or Hansen/’s disease, the preferred designation for the illness. When I became interested in collecting and studying narratives and traditions trom Carville in

| Preface { xiii} 1983, I contacted Johnny Harmon, who still lived in Vacherie at the time. He did not want to talk about his experiences at the time because it would “bring back a lot of bad, painful memories,” but his suggestions provided my first introductions at Carville and paved the way for the years of interviews with residents at Carville. In 1993, the Harmons returned to Carville for treatment of various health problems, Mr. Harmon became an out_ spoken advocate and activist for the dignity and rights of HD patients, and he published his autobiography, King of

- the Microbes. He later talked with me several times about Carville and his experiences as a patient.

Among the many other people who have been important to this study and have helped me in various ways are Dr. Robert Hastings, Julia and Ray Elwood,

Esperanza, Rita, Hazel, Billy, Mary Ruth, Louis - Boudreaux, Betty Martin, Sister Laura Stricker, Sister

Francis de Sales, Sister Margaret Brou, Tanya Thomassie, Father Garland Reynolds, Jane Walters, Elizabeth Schexnyder, Leonide Landry Manes, Claire Manes, Christopher Manes, Jeffrey Braverman, James Carville, Charles Stanley, and the National Hansen’s Disease Program. My family, friends, and colleagues

them all. |

were supportive of my work at Carville and often _ fascinated with the stories I recorded. I am grateful to

{xiv} Preface | Parts of three of the chapters below were previously published as journal articles. I want to acknowledge and thank the journals where they were published. An earlier version of ““Through the Hole in the Fence’: Personal Narratives of Absconding From Carville” first appeared in Fabula 29 (1988): 354-64. An earlier version of “Telling It Slant: Personal Narratives, Tall Tales, and

the Reality of Leprosy” first appeared in Western Folklore 49 (1990): 191-207. An earlier version of “The

23-38. | |

World Downside Up: Mardi Gras at Carville” first appeared in Journal of American Folklore 111 (1998):

In this book, I look at the memories, narratives, and traditions of former residents of Carville as well as the cultural context the residents had to negotiate. People’s

most vivid remembrances about what happened to them and their feelings about what happened tend to be clustered around significant events, and their personal

narratives reflect this. This study is not intended as a complete history of Carville, nor can it re-create the everyday lives of the residents. Rather, it focuses on memory—what and how Carville residents remember. Their narratives and traditions are vehicles for us to

understand something about what they remember about their life experience and how they conceptualize and reconstruct it. The book looks through the prism of

Preface {xv}

memory at how Carville residents dealt with their quest for identity and survival with dignity in spite of

their illness. What comes across to the rest of us— through their memories, narratives, traditions, and celebrations—is their humanity. They are people who not only survived under difficult conditions but who prevail in the sharing of their memories and stories, connecting us to their humanity.

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Carville @

To say that Carville is just a place about Hansen’s disease would be like saying that Moby Dick was just a tale about a whale.

—JAMES CARVILLE Carville Centennial Speech, 1994

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{qq | Carville, Leprosy, .““ + and Real People AN INTRODUCTION TO A CULTURE APART

We tell stories because, in order to cope with the present and to face the future, we

have to create the past, both as time and

space, through narrating it. | —W. F. H. NICOLAISEN

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 the disease historically called leprosy. Until the 1960s, patients diagnosed in the United States were legally quarantined at Carville. Many never left. {3 |

{4} Carville, Leprosy, and Real People _ The story of Carville and the patients who were exiled there—for treatment and for separation from the rest of society—is a story of survival and a quest for dignity. It is

the story of the place itself and of its former residents who, against many odds, were able to survive the devastating assault that the diagnosis of leprosy brought to their personal identity. When patients entered Carville, they typically left everything behind, including their identities, their legal names, and their hopes for the future.

Of all illnesses, leprosy is probably the one historically most burdened with meanings. Those meanings can _ range from judgmental and stigmatizing to metaphorical and humorous. Susan Sontag refers to leprosy as “one of the most meaning-laden of diseases” (1989: 92). Like other “meaning-laden” diseases, such as AIDS, it was both a serious illness and a moralistic marker. In the late nineteenth and early twentieth centuries,

the highest incidence of leprosy in the United States was in southern Louisiana. To the Cajuns and Creoles in

Louisiana, leprosy was la maladie que tu nommes pas (the disease you do not name}. A person with a suspected case of leprosy was sometimes hidden and pro-

tected by the family. Others were banished by their families when their leprosy was diagnosed. By the mid18408, isolation had become an accepted practice in the United States for dealing with leprosy patients. Fear of leprosy was an unquestioned physical reality in Western

Carville, Leprosy, and Real People {5} culture, an accepted fiction based on biblical associations with “lepers.” In speaking of the reaction to cancer as a “demonic enemy” Sontag says in Illness as Metaphor, “Any disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious” (1978: 6). She further says: “Leprosy in its heyday aroused a similarly disproportionate sense of horror. In the Middle Ages, the leper was a social text in which corruption was made visible; an exemplum, an emblem of

decay. Nothing is more punitive than to give a disease a meaning—that meaning being invariably a moralistic one. Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash with significance” (1978: 58}.

Untreated leprosy is a serious illness, a disease “written on the skin.” As Sander Gilman points out, “all ill-

nesses written on the skin, following the medieval understanding of leprosy as a sexually transmitted disease, are always understood as deforming but also as making one’s stigma visible” (Gilman 1988: 76). At least

some of the beliefs, laws, and practices from medieval times in regard to leprosy’ were still haunting patients in the nineteenth century and the first half of the twentieth century. The fear of leprosy in the United States led to the isolation of its victims and eventually to the establishment of Carville.

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