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


Book 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.




Carville


Book Description

Personal accounts of life in America's last colony for sufferers of Hansen's disease




Squint


Book Description

Lying in a hospital bed, José P. Ramirez, Jr. (b. 1948) almost lost everything because of a misunderstood disease. When the health department doctor gave him the Handbook for Persons with Leprosy, Ramirez learned his fate. Such a diagnosis in 1968 meant exile and hospitalization in the only leprosarium in the continental United States—Carville, Louisiana, 750 miles from his home in Laredo, Texas. In Squint: My Journey with Leprosy, Ramirez recalls being taken from his family in a hearse and thrown into a world filled with fear. He and his loved ones struggled against the stigma associated with the term “leper” and against beliefs that the disease was a punishment from God, that his illness was highly communicable, and that persons with Hansen's disease had to be banished from their communities. His disease not only meant separation from the girlfriend who would later become his wife, but also a derailment of all life's goals. In his struggle Ramirez overcame barriers both real and imagined and eventually became an international advocate on behalf of persons with disabilities. In Squint, titled for the sliver of a window through which persons with leprosy in medieval times were allowed to view Mass but not participate, Ramirez tells a story of love and perseverance over incredible odds.




The Second Life of Mirielle West


Book Description

The glamorous world of a silent film star’s wife abruptly crumbles when she’s forcibly quarantined at the Carville Lepers Home in this page-turning story of courage, resilience, and reinvention set in 1920s Louisiana and Los Angeles. Based on little-known history, this timely book will strike a chord with readers of Fiona Davis, Tracey Lange, and Marie Benedict. Based on the true story of America’s only leper colony, The Second Life of Mirielle West brings vividly to life the Louisiana institution known as Carville, where thousands of people were stripped of their civil rights, branded as lepers, and forcibly quarantined throughout the entire 20th century. For Mirielle West, a 1920’s socialite married to a silent film star, the isolation and powerlessness of the Louisiana Leper Home is an unimaginable fall from her intoxicatingly chic life of bootlegged champagne and the star-studded parties of Hollywood’s Golden Age. When a doctor notices a pale patch of skin on her hand, she’s immediately branded a leper and carted hundreds of miles from home to Carville, taking a new name to spare her family and famous husband the shame that accompanies the disease. At first she hopes her exile will be brief, but those sent to Carville are more prisoners than patients and their disease has no cure. Instead she must find community and purpose within its walls, struggling to redefine her self-worth while fighting an unchosen fate. As a registered nurse, Amanda Skenandore’s medical background adds layers of detail and authenticity to the experiences of patients and medical professionals at Carville – the isolation, stigma, experimental treatments, and disparate community. A tale of repulsion, resilience, and the Roaring ‘20s, The Second Life of Mirielle West is also the story of a health crisis in America’s past, made all the more poignant by the author’s experiences during another, all-too-recent crisis. PRAISE FOR AMANDA SKENANDORE’S BETWEEN EARTH AND SKY “Intensely emotional…Skenandore’s deeply introspective and moving novel will appeal to readers of American history.” —Publishers Weekly




Phantom Plague


Book Description

The definitive social history of tuberculosis, from its origins as a haunting mystery to its modern reemergence that now threatens populations around the world. It killed novelist George Orwell, Eleanor Roosevelt, and millions of others-rich and poor. Desmond Tutu, Amitabh Bachchan, and Nelson Mandela survived it, just. For centuries, tuberculosis has ravaged cities and plagued the human body. In Phantom Plague, Vidya Krishnan, traces the history of tuberculosis from the slums of 19th-century New York to modern Mumbai. In a narrative spanning century, Krishnan shows how superstition and folk-remedies, made way for scientific understanding of TB, such that it was controlled and cured in the West. The cure was never available to black and brown nations. And the tuberculosis bacillus showed a remarkable ability to adapt-so that at the very moment it could have been extinguished as a threat to humanity, it found a way back, aided by authoritarian government, toxic kindness of philanthropists, science denialism and medical apartheid. Krishnan's original reporting paints a granular portrait of the post-antibiotic era as a new, aggressive, drug resistant strain of TB takes over. Phantom Plague is an urgent, riveting and fascinating narrative that deftly exposes the weakest links in our battle against this ancient foe.




IAL Textbook of Leprosy


Book Description




Leprosy and Stigma in the South Pacific


Book Description

The long-lasting effects of leprosy are still evident in various parts of the world. This book details the personal experiences of people in Fiji, New Caledonia, Samoa, Tonga and Vanuatu, the majority of whom contracted leprosy as children. It recounts how the victims were subject to prolonged isolation in various leprosaria as the first effective cure for leprosy only became available after 1949. Oral histories are utilized and verbatim extracts demonstrate the level of stigma experienced by these young people. Topics covered include the exact nature of the diagnosis, removal from one's family, the experience of isolation, and the reaction of family and villages upon the individual's return to community life.




Growing Up at Grossinger's


Book Description

"To be devoured in one non-stop gulp...fascinating reading."—The New York Post From 1919 to 1986, Grossinger's Catskill Resort Hotel provided a summer retreat from the city heat for New York's Jews, and entertained the great, the near-great, and the not so great, Jews and Gentiles alike. A melting pot of the Borscht Belt, sports, and show-biz worlds, loyal visitors included Red Buttons, Rocky Marciano, Eddie Fisher, and Jackie Robinson. Tania Grossinger grew up there. In her fascinating insider's account of life in the hospitality industry, she sheds light on how hotel children keep up with the frenetic pace of life, and how they come to grips with the outside world (which intrudes now and again), sex (happening in every room), and, occasionally, their intellectual interests. Growing Up at Grossinger's is both a wonderful coming-of-age story and a sentimental reading of a chapter of the Jewish experience in America that has now closed. 25 b/w photographs. Skyhorse Publishing, along with our Arcade, Good Books, Sports Publishing, and Yucca imprints, is proud to publish a broad range of biographies, autobiographies, and memoirs. Our list includes biographies on well-known historical figures like Benjamin Franklin, Nelson Mandela, and Alexander Graham Bell, as well as villains from history, such as Heinrich Himmler, John Wayne Gacy, and O. J. Simpson. We have also published survivor stories of World War II, memoirs about overcoming adversity, first-hand tales of adventure, and much more. While not every title we publish becomes a New York Times bestseller or a national bestseller, we are committed to books on subjects that are sometimes overlooked and to authors whose work might not otherwise find a home.




In the Sanctuary of Outcasts


Book Description

Following conviction for bank fraud, White spent a year in a minimum-security prison in Carville, Louisiana, housed in the last leper colony in mainland America. His fascinating memoir reflects on the sizable group of lepers living alongside the prisoners.--"Publishers Weekly."




Leper Spy


Book Description

The GIs called her Joey. Hundreds owed their lives to the tiny Filipina who stashed explosives in spare tires, tracked Japanese troop movements, and smuggled maps of fortifications across enemy lines. As the Battle of Manila raged, Josefina Guerrero walked through gunfire to bandage wounds and close the eyes of the dead. Her valor earned her the Medal of Freedom, but what made her a good spy was also destroying her: leprosy, which so horrified the Japanese they refused to search her. After the war, army chaplains found her in a nightmarish leper colony and fought for the US government to do something it had never done: welcome a foreigner with leprosy. This brought her celebrity, which she used to publicly speak for other sufferers. However, the notoriety haunted her and she sought a way to disappear. Ben Montgomery now brings Guerrero's heroic accomplishments to light.