The subtitle, “Leprosy, Stigma, and the Fight for Justice,” signals this is the story of the only leprosarium in the continental US. Its history and the history of the treatment of Hansen’s Disease, commonly known as leprosy, makes for a dramatic read. The unwarranted fear of the disease has resulted in tragically mistaken public health policy; I appreciated learning the truth about it.
The author is a long-time NPR reporter whose father-in-law revealed the family’s secret late in his life: his father contracted the disease when he served in army in the Philippines. When it was discovered, he disappeared from his family’s life and the author’s father-in-law never saw his father again. This book is a discovery of his life, and many other lives, in Carville.
It turns out that 95% of the population cannot contract the bacterial disease and that transmission is not easily accomplished. Nevertheless, when a person was found to have the disease, they were isolated and sent to this former sugar plantation. And by “sent” I mean incarcerated. They were treated like criminals and even prohibited from voting. Carville existed from 1894 until 1999. When it first came into existence, only the Sisters of Charity would take on this work. Unfortunately they had some strict rules, some of which had no basis in providing medical care. Over the years they proved to be good caretakers and some were involved in finding a cure for the disease.
It was in the mid- to late 1940s that effective treatments began to be found. The institution continued to treat patients until 1999; some had nowhere else to go and though the disease was arrested, many had suffered the debilitating effects of it. Fessler tells the stories of some who lived and died in Carville, making the tragedies of their lives real.
The question of why this is a disease so feared and why there are such misconceptions is a good question. In the Bible it was the punishment for sin and comes up a surprising 68 times, according to a website I saw. It was incurable (until modern times) and its horrifying and disfiguring results lasted a long lifetime. Contrast that with tuberculosis, which was both much more communicable and ended life much earlier. The opera La Traviata, based on the novel Camille, features a beautiful woman dying in such a lovely way. An opera about a sufferer of Hansen’s Disease is a hard concept to imagine.
I did not like audiobook reader’s rendition. Occasionally I have found that readers feel they must work to convey the meaning of each word; my experience in reading a book is that the author’s words themselves do the trick.
On a personal note, Bill Scarlett, my sister’s husband, spoke about performing jazz clarinet wherever he could, including at Carville, probably when he was a student at LSU. It was a unique opportunity.
Pam Fessler, Carville’s Cure, Liveright, 2020, 368 pages (I listened to the audiobook). Neither local library has it; available from Amazon.