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

by Pam Fessler Narrated by Pam Ward

Overview

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.



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 as well as a butcher from New York, a nineteen-year-old debutante from New Orleans, and a pharmacist from Texas. 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.

Editorial Reviews

From the Publisher

"[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 Wall Street Journal

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

"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."— Publishers Weekly

"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."— Kirkus Reviews

"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

Kirkus Reviews

2020-04-12
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)

Product Details

BN ID:	2940178957912
Publisher:	HighBridge Company
Publication date:	07/14/2020
Edition description:	Unabridged

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