Carville's Cure: Leprosy, Stigma, and the Fight for Justice (Hardcover)

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Description


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.


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.



About the Author


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

Praise For…


[F]ascinating.... A remarkable and vivid case study for exploring issues of patients’ rights, the ethics of clinical research and the notorious American tradition of intermingling concerns about disease with anxieties about immigration and the proper scope of public-welfare management.... Ms. Fessler’s meticulously researched account illuminates the endless ways, large and small, in which those confined to Carville sought to determine the shape of their own lives.
— Laura Kolbe

Fessler presents inspiring and tragic stories of patients who mostly experienced Carville as a prison, sometimes a sanctuary.... Heartbreaking and infuriating.
— Tony Miksanek

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. 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.... 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.

Fessler [makes] 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. A heart-wrenching story of little-known social history.
— Marcia G. Welsh, Library Journal

[A] fine history, by turns heartbreaking and infuriating. . . Fessler paints a clear picture of a class of people who were confined at Carville typically for life, isolated, stripped of their identities [and] their civil rights. . . Vignettes of the patients, some tracked over decades, humanize the story. . . A caustic story told with empathy and a sharp eye for society’s intolerance.

NPR journalist Pam Fessler has put her considerable professional and personal skills to work, unmasking the history and stigma of this ancient disease. That stigma, which lingers despite scientific evidence, dissipates with this book. Fessler’s skills as a journalist and humanist shine new light on old terrors, with well-told stories of lives and science.
— Susan Stamberg, special correspondent, NPR

Pam Fessler’s powerful book combines fascinating medical history with a deeply moving family story about a disease that has been misunderstood and stigmatized since the Old Testament.
— David Maraniss, Pulitzer Prize-winning author of A Good American Family: The Red Scare and My Father

Pam Fessler's extraordinary knack for storytelling brings home the shameful history of discrimination and exile of those battling leprosy. At the same time, she lifts up the resilience and humanity of a community largely erased from our history. It's a moving and passionate appeal to our consciences.
— E.J. Dionne, author of Code Red: How Progressives and Moderates Can Unite to Save Our Country

Throughout my professional life, I’ve traveled to many places and at many times tried to explain Carville to people around the world. Compared to Pam’s efforts mine were feeble. This is an excellent story of my hometown.
— James Carville, political strategist

Carville’s Cure is a powerful story of all the ways that infectious diseases bring out the best and the worst in people: hope and fear, science and faith, humanity and cruelty. It is the very best kind of history: one that is alive with the people whose story it tells, and one that teaches us how to face challenges we will face in the future. It will move you.

— Ron Klain, former chief of staff to Vice President Joe Biden and White House Ebola response coordinator, 2014–15

By turns heart-wrenching, inspiring, and infuriating, this is a fast-paced and highly readable account of attempts by patients, their families, doctors and American society in general to deal with the worlds’ most misunderstood disease. Written with the eye of an experienced journalist and the voice of a novelist, this book tells the story—stranger than fiction—of the patients, nuns, doctors, movie stars, and politicians who have struggled to come to terms with the stigma and discrimination attached to leprosy. The book is painstakingly researched and documented, and unfolds dramatically through the words of the patients and other participants through their letters and personal papers as well as newspaper accounts and interviews.
— David Scollard, retired director, National Hansen’s Disease Program

Behind barbed wire on a onetime sugar plantation on the Louisiana bayou, generations of Americans who had the bad luck to contract leprosy were forcibly confined by their own government, stripped of their most basic rights, and left to suffer and die. Pam Fessler, by shining a light on their stories—including a surprising family connection of her own—has redeemed them. She has also left us with a sobering reminder of the costs of demonizing disease and provided a must-read for this time of new infectious threats.
— Meredith Wadman, M.D., Science magazine reporter and author of The Vaccine Race: Science, Politics and the Human Costs of Defeating Disease
Product Details
ISBN: 9781631495038
ISBN-10: 1631495038
Publisher: Liveright
Publication Date: July 14th, 2020
Pages: 368
Language: English