Out of the Shadow of Leprosy

Out of the Shadow of Leprosy
Author: Claire Manes
Publisher: Univ. Press of Mississippi
Total Pages: 229
Release: 2013-03-18
Genre: Biography & Autobiography
ISBN: 1617037761

In 1924 when thirty-two-year-old Edmond Landry kissed his family good-bye and left for the leprosarium in Carville, Louisiana, leprosy, now referred to as Hansen's Disease, stigmatized and disfigured but did not kill. Those with leprosy were incarcerated in the federal hospital and isolated from family and community. Phones were unavailable, transportation was precarious, and fear was rampant. Edmond entered the hospital (as did his four other siblings), but he did not surrender to his fate. He fought with his pen and his limited energy to stay connected to his family and to improve living conditions for himself and other patients. Claire Manes, Edmond's granddaughter, lived much of her life gripped by the silence surrounding her grandfather. When his letters were discovered, she became inspired to tell his story through her scholarship and his writing. Out of the Shadow of Leprosy: The Carville Letters and Stories of the Landry Family presents her grandfather's letters and her own studies of narrative and Carville during much of the twentieth century. The book becomes a testament to Edmond's determination to maintain autonomy and dignity in the land of the living dead. Letters and stories of the other four siblings further enhance the picture of life in Carville from 1919 to 1977.

Carville

Carville
Author: Marcia G. Gaudet
Publisher: Univ. Press of Mississippi
Total Pages: 239
Release: 2004-12-02
Genre: Biography & Autobiography
ISBN: 1604736038

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

Carville

Carville
Author: Marcia Gaudet
Publisher: Univ. Press of Mississippi
Total Pages: 244
Release: 2009-09-28
Genre: Social Science
ISBN: 1628467819

Mysterious and misunderstood, distorted by Biblical imagery of disfigurement and uncleanness, Hansen's disease or leprosy has all but disappeared from America's consciousness. In Carville, Louisiana, the closed doors of the nation's last center for the treatment of leprosy open to reveal stories of sadness, separation, and even strength in the face of what was once a life-wrenching diagnosis. Drawn from interviews with living patients and extensive research in the leprosarium's archives, Carville: Remembering Leprosy in America tells the stories of former patients at the National Hansen's Disease Center. For over a century, from 1894 until 1999, Carville 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 leprosy. Patients—exiled there by law for treatment and for separation from the rest of society—reveal how they were able to cope with the devastating blow the diagnosis of leprosy dealt them. Leprosy was so frightening and so poorly understood that entire families would suffer and be shunned if one family member contracted the disease. When patients entered Carville, they typically left everything behind, including their legal names and their hopes for the future. Former patients at Carville give their views of the outside world and of the culture they forged within the treatment center, which included married and individual living quarters, a bar, and even a jail. Those quarantined in the leprosarium created their own Mardi Gras celebrations, their own newspaper, and their own body of honored stories in which fellow sufferers of Hansen's disease prevailed over trauma and ostracism. Through their memories and stories, we see their very human quest for identity and endurance with dignity, humor, and grace.

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

Carville's Cure: Leprosy, Stigma, and the Fight for Justice
Author: Pam Fessler
Publisher: Liveright Publishing
Total Pages: 368
Release: 2020-07-14
Genre: History
ISBN: 1631495046

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.

In the Shadow of The Pali

In the Shadow of The Pali
Author: Lisa Cindrich
Publisher: Penguin
Total Pages: 171
Release: 2002-06-10
Genre: Juvenile Fiction
ISBN: 1101176903

In this extraordinary first novel, Cindrich brings hope to horror, capturing a journey that teaches a lost girl who has leprosy more about love than she has ever known.

The Island at the End of Everything

The Island at the End of Everything
Author: Kiran Millwood Hargrave
Publisher: Chicken House
Total Pages: 193
Release: 2017-05-04
Genre: Juvenile Fiction
ISBN: 1911077473

Ami lives on Culion, an island for people who have leprosy. Her mother is infected. She loves her home - but then islanders untouched by sickness are forced to leave. Ami's desperate to return before her mother's death. She finds a strange and fragile hope in a colony of butterflies. Can they lead her home before it's too late?

Naming the Leper

Naming the Leper
Author: Christopher Lee Manes
Publisher: LSU Press
Total Pages: 84
Release: 2020-02-05
Genre: Poetry
ISBN: 0807173290

Between 1919 and 1941, five relatives of Christopher Lee Manes were diagnosed with an illness then referred to as “leprosy” and now known as Hansen’s disease. After their diagnosis, the five Landry siblings were separated from their loved ones and sent to the National Leprosarium in Carville, Louisiana, where they remained in quarantine until their deaths. Drawing on historical documents and imaginative reconstructions, Naming the Leper tells through poetry this family’s haunting story of exile and human suffering. While confined at Carville, the Landry siblings attempted to keep some connection to the outside world by writing letters to family members and other loved ones. Manes incorporates materials from this correspondence, along with medical records, the leprosarium newsletter, and personal interviews, as he crafts poems that reconstruct his relatives’ daily lives at Carville. Although much can only be imagined, their words remain factual and their feelings of loneliness, abandonment, and pain become explicit. Poetry cannot bring Manes’s relatives back to life, nor can it heal wounds nearly a century old, but it can capture the sufferings and traumas caused by disease and exile. As a work of documentary poetry, Naming the Leper demonstrates that a term like “leper,” whether a stigma attached to patients suffering from illness or a word inscribed on the caskets of the deceased, cannot define the lives of individuals or encompass the full extent of their legacies.

Squint

Squint
Author: Jose P. Ramirez
Publisher: Univ. Press of Mississippi
Total Pages: 240
Release: 2009-09-28
Genre: Biography & Autobiography
ISBN: 160473339X

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.