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Title:

Carville's cure : leprosy, stigma, and the fight for justice / Pam Fessler.

Author:

Fessler, Pam, author.

ISBN:

9781631495038

Personal Author:

Fessler, Pam, author.

Edition:

First edition.

Physical Description:

pages cm

Content Type:

text

Media Type (RDA):

unmediated

Carrier Type:

volume

Abstract:

"The unknown story of the only leprosy colony in the continental United States, and the thousands of Americans who were exiled--hidden away with their "shameful" disease. Between Baton Rouge and New Orleans, the Mississippi River curls around an old plantation thick with trees, with a stately white manor house at its heart. Locals knew it as Carville--the site of the only leprosarium in the continental United States from 1894 until 1999, where generations of afflicted Americans were isolated, often until death. While experts today know that leprosy is not nearly as contagious as once feared, there remains a virulent stigma around those who suffer from it. Pam Fessler tells the story of Carville's patients against the backdrop of America's slowly shifting attitudes toward those cast aside as "others." She also reveals how patients rallied together with an unlikely team of nuns, researchers, and doctors to find a cure for the disease, and to fight the insidious stigma that surrounded it. With original interviews and newly discovered archival material, Fessler presents an essential history of one of America's most shameful secrets"-- Provided by publisher.

Corporate Subject:

Louisiana Leper Home.

United States Marine Hospital No. 66 (Carville, La.)

Public Health Service Hospital at Carville, La.

Subject Term:

Leprosy -- Patients -- Louisiana -- History.

Leprosy -- United States -- History.

Format:

Books

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Library	Item Barcode	Shelf Number	Status
Searching... Albion - Hoag Library	34411001512838	362.1969 FESS	Searching... Unknown
Searching... Medina - Lee-Whedon Memorial Library	34103001884255	362.19 FESS (MIND & BODY 7)	Searching... Unknown

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Summary

The Mississippi River between Baton Rouge and New Orleans curls around an old sugar plantation that long housed one of America's most painful secrets. Locals knew it as Carville, the site of the only leprosy colony in the continental United States, where generations of afflicted Americans were isolated--often against their will and until their deaths.

Following the trail of an unexpected family connection, acclaimed journalist Pam Fessler has unearthed the lost world of the patients, nurses, doctors, and researchers at Carville who struggled for over a century to eradicate Hansen's disease, the modern name for leprosy. Amid widespread public anxiety about foreign contamination and contagion, patients were deprived of basic rights--denied the right to vote, restricted from leaving Carville, and often forbidden from contact with their own parents or children. Neighbors fretted over their presence and newspapers warned of their dangerous condition, which was seen as a biblical "curse" rather than a medical diagnosis.

Though shunned by their fellow Americans, patients surprisingly made Carville more a refuge than a prison. Many carved out meaningful lives, building a vibrant community and finding solace, brotherhood, and even love behind the barbed-wire fence that surrounded them. Among the memorable figures we meet in Fessler's masterful narrative are John Early, a pioneering crusader for patients' rights, and the unlucky Landry siblings--all five of whom eventually called Carville home--as well as a butcher from New York, a 19-year-old debutante from New Orleans, and a pharmacist from Texas who became the voice of Carville around the world. Though Jim Crow reigned in the South and racial animus prevailed elsewhere, Carville took in people of all faiths, colors, and backgrounds. Aided by their heroic caretakers, patients rallied to find a cure for Hansen's disease and to fight the insidious stigma that surrounded it.

Weaving together a wealth of archival material with original interviews as well as firsthand accounts from her own family, Fessler has created an enthralling account of a lost American history. In our new age of infectious disease, Carville's Cure demonstrates the necessity of combating misinformation and stigma if we hope to control the spread of illness without demonizing victims and needlessly destroying lives.

Author Notes

Pam Fessler is an award-winning correspondent with NPR News, where she covers poverty, philanthropy, and voting issues. She lives in Bethesda, Maryland.

Reviews (4)

Publisher's Weekly Review

NPR correspondent Fessler's polished and compassionate debut examines the history of Hansen's disease (the modern name for leprosy) in America through the story of the Louisiana Leper Home in Carville, La. In the 1890s, New Orleans dermatologist Isadore Dyer established the quarantine facility for leprosy patients on the grounds of a defunct sugar plantation. In 1921, the U.S. Public Health Service took over Carville (as it was called by locals), making it the only national leprosarium in America. Fessler profiles several patients (most of whom were sent to Carville by mandatory state reporting laws), including her husband's grandfather, and New Orleans debutante Betty Parker, who fell in love with a fellow patient and ran away with him. Fessler also documents the 1941 discovery that the antibiotic promin could be effective in treating Hansen's disease, and notes that by the 1980s additional medicines had slowed new outbreaks and made most cases manageable. Carville's planned shutdown was delayed until 1999, Fessler writes, because many remaining patients had nowhere else to go. Her well-researched and articulate account humanizes sufferers and caregivers alike, and offers hope in the medical field's ability to halt the spread of contagious illness. Readers will be enlightened and encouraged. Agent: Gail Ross, the Ross Yoon Agency. (July)

Kirkus Review

A social and medical history of Louisiana's leprosarium, the only such operation in the continental U.S. during the 20th century. From 1894 until 1999, on the Mississippi River between New Orleans and Baton Rouge, stood the Louisiana Leper Home, later known as Carville. This is the story of the patients, families, and caregivers who contended with Hansen's disease, also known as leprosy, one of the world's most dreaded and misunderstood illnesses. In this fine history, by turns heartbreaking and infuriating, NPR correspondent Fessler begins with the ramshackle sugar plantation that was chosen to house the nation's leprotic population and then moves on to the nature and progress of the disease--in particular, the societal perception of leprosy, which hasn't changed much from its biblical depiction "as God's way of punishing sinners by condemning them to a life of suffering and scorn." This stigma has always clung to those with the disease, and it has been used as a convenient justification for prejudice against immigrants. "Asian immigrants, already a target for those who believed they were taking Americans' jobs, were especially suspect," writes the author. Without descending into melodrama, Fessler paints a clear picture of a class of people who were confined at Carville typically for life, isolated, stripped of their identities (since it might cause backlashes against their families) and their civil rights. The author also shows how Carville became a refuge for its patients as well as a rare integrated institution in the Jim Crow South. Vignettes of the patients, some tracked over decades, humanize the story, as does the depiction of the Daughters of Charity, who cared for the patients and "would prove to be some of [their] strongest allies in their fight for more freedom and rights." Fessler also follows medical developments to treat the disease, which still has the same old stigmas of discrimination, superstition, and ignorance. A caustic story told with empathy and a sharp eye for society's intolerances. (8 pages of b/w illustrations) Copyright (c) Kirkus Reviews, used with permission.

Booklist Review

Leprosy (now known as Hansen's disease) is likely the most stigmatized illness in human history. Superstition, fear, and ignorance surrounding the infection have resulted in social ostracism and even imprisonment of the afflicted. Caused by a slowly growing bacteria that can be transmitted person-to-person or by exposure to an infected armadillo, the disease can provoke skin lesions and peripheral nerve damage. Yet an astonishing 95-percent of the human population is naturally immune to Hansen's disease! And for the rest, effective antibiotic therapy is free of charge through the World Health Organization. NPR correspondent Fessler chronicles the "well-meaning but misguided effort to protect public health" at the Louisiana Leper Home (later called Carville) that opened in 1894. Despair, bitterness, and separation from family were prevalent in patients confined there. Fessler presents inspiring and tragic stories of patients who mostly experienced Carville as a prison, sometimes a sanctuary. He also portrays activists and the devoted Catholic nun nurses who cared for the incarcerated population, one of whom, Sister Catherine Sullivan, shared her feeling about the leprosarium, "Mercy is no substitute for justice." Heartbreaking and infuriating.

Library Journal Review

NPR commentator Fessler's father-in-law's father contracted Hansen's Disease (leprosy) as a soldier in the Philippines at the end of the Spanish-American War. He returned to New York to start his own business, marry, and raise a family, but eventually the slow-growing disease attacked his nerves, making his fingers and feet numb, and robbed his eyesight. Finally, after consulting a doctor, he, like many others living with Hansen's Disease, was taken away from his home by public officials, isolated, and brought to the leprosarium in Carville, Louisiana, at one time the only leprosarium in the continental U.S. Here, Fessler tells "the story of the thousands of patients, families, and caregivers in the U.S. who struggled against one of the world's most dreaded and misunderstood diseases." In 2004, Marcia Gaudet published Carville, but Fessler had access to more research and archives, making the residents, and their doctors and the Daughters of Charity nuns who cared for them, come alive in this telling. The treatment of those living with Hansen's Disease has had a quiet and shameful history, but Fessler allows for people's voices to be heard in their own words. VERDICT A heart-wrenching story of little-known social history.--Marcia G. Welsh, Dartmouth Coll. Lib., Hanover, NH

Author's Note	p. xi
Prologue	p. 1
1 Exile	p. 9
2 God versus Germs	p. 22
3 Rescue Mission	p. 32
4 Rebellion	p. 46
5 "What Have I Got, Doctor-Leprosy?"	p. 61
6 Finding a Home	p. 74
7 Ripped Apart	p. 86
8 "Nun Nurses"	p. 101
9 Jail within a Jail	p. 114
10 The Hole in the Fence	p. 123
11 Search for a Cure	p. 138
12 Until Leprosy Do Us Part	p. 149
13 The Miracle	p. 163
14 Fighting for Freedom	p. 179
15 Not Bright Enough	p. 190
16 "It's Tallulah, Darling"	p. 203
17 Human Touch	p. 222
18 An Era Ends	p. 236
19 Discrimination	p. 251
20 Shutting Down	p. 268
21 Lessons Not Learned	p. 283
Epilogue	p. 292
Acknowledgments	p. 295
Notes	p. 300
Selected Bibliography	p. 327
Index	p. 330

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Bound With These Titles

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Summary

Summary

Author Notes

Reviews (4)

Publisher's Weekly Review

Kirkus Review

Booklist Review

Library Journal Review

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