CARVILLE’S CURE: Leprosy, Stigma, and the Fight for Justice

For more than 80 years, the U.S government ran a little-known leprosarium in Carville, La., where thousands of Americans diagnosed with leprosy (now called Hansen’s disease) were isolated. Many were confined there against their will and lost not only their freedom but their rights, including the right to vote.

In 1931, some of the patients had what would turn out to be a pivotal meeting with the Louisiana commander of The American Legion, Sam Houston Jones. About two dozen patients were veterans who had likely picked up the disease while serving in the military. They complained to Jones about their poor treatment and living conditions, and he vowed to help them with the full backing of the American Legion. “In union, there is strength,” he told the men. “You poor bastards here, twenty-three of you, are helpless. But with a million Legionnaires behind you….”

It was the start of an incredible relationship between The American Legion and the patients, who had been forgotten by much of the world. They soon set up their own post at the hospital and with the help of The American Legion launched a newspaper that would gain international recognition as a leading voice for patient rights. The American Legion pressured public health officials in Washington to improve the facilities at Carville, and before long a new hospital and recreation center were built. In 1936, a legionnaire petitioned the governor to get a telephone installed for the patients, who had no other way to communicate with loved ones. A decade later, The American Legion helped win back the patients’ right to vote.

Carville patients benefited greatly from their relationship with The American Legion. But the greatest gift was recognition from this group of outsiders that the patients were people who needed to be treated with respect despite having a much-stigmatized disease. In fact, leprosy is barely contagious and, today, is easily cured.

The book will be published by Liveright/Norton on July 14. It can be purchased at Amazon, Indiebooks and other sites found at https://wwnorton.com/books/9781631495038

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