Author Pam Fessler Discusses Leprosy, New Book
LULU GARCIA-NAVARRO, HOST:
Over a century ago, thousands of people were confined on the grounds of what had once been a sugar plantation in rural Louisiana. They came from all walks of life, were all ages and races. They committed no crime. Instead, all were infected with the bacteria that causes Hansen's disease, also known as leprosy. What started as a Louisiana Leper Home would soon become the National Leprosarium of the United States, known informally by the name of the town, Carville. The history is the subject of a new book by NPR's Pam Fessler. It's called "Carville's Cure." And I'm very happy to welcome Pam to talk with me now.
PAM FESSLER, BYLINE: Hi. And I am very happy to be here.
GARCIA-NAVARRO: (Laughter) As you write in the beginning of this book, your husband's grandfather was one of the people sent to Carville, but he didn't live there very long at all. Can you tell us his story?
FESSLER: My father-in-law actually called us up one day in 1998 when he was an older man, and he said he had a secret to tell us. And it was something that he had kept for 60 years. And it was that when he was a teenager, he went to school one day. And he came home, and his father was gone. He had been taken away by public health officials and brought to Carville, La. My father-in-law never saw or talked to his father again. And he knew he had leprosy, but his mother told him not to ever tell anybody that his father had this disease because the stigma was so great.
GARCIA-NAVARRO: Yeah. You write about another patient whose family chose to tell people he'd gone away because he had a nervous breakdown rather than admit that he'd been sent away because he had the disease. The truth is leprosy is one of the least contagious diseases out there, yet it carries this huge stigma that caused your husband's family to keep a secret for 60 years. Why is that?
FESSLER: Obviously, the depiction of leprosy in the Bible paints it almost as a sign of sin and that this is a reflection of somebody who has commit some kind of a - an offense. And the book "Ben-Hur," which had been written after the Civil War, was one of the most popular books in the country. And in that book, Ben-Hur's mother and sister contract leprosy, and they are banned from Jerusalem. They are sent out of town. He depicts it as a very terrible, terrible, terrible disease.
This resonated with the American public. Also, at the time, there was a lot of fear of immigrants bringing germs into the country and diseases. And I think it all worked together for the public to basically demand that public health officials do something about this. We need to confine these people and get them out of our streets and our communities.
GARCIA-NAVARRO: So what do we know about leprosy? I mean, remind us what the disease is and how it affects people.
FESSLER: Well, it's a disease that's caused by a bacteria, and the bacteria, over time, affects the nerves. So victims lose feeling in their hands and their feet and then other parts of their body. But it is an incredibly slow-developing disease. And it also turns out that 95% of the human race is basically naturally immune to leprosy. You can't just get it by, you know, say I sneezed on you. It would take long-term sustained contact.
GARCIA-NAVARRO: The patients sent to Carville were from a cross-section of American society, but a large population were immigrants.
FESSLER: This is true. Now, that actually changed over time. Initially, they were mostly native-born Americans. But over time, we've seen more of the cases, especially after the federal government took over and brought patients from all around the country, not just Louisiana. And it was quite an incredibly diverse patient population. They had classes together, dances and social activities. They had a...
GARCIA-NAVARRO: There was even a newspaper at a certain point.
FESSLER: Oh, yeah. And that paper not only was for the patients themselves, but it started getting distributed around the country in the 1940s when the patients started to band together and realize that they could fight for their own rights.
GARCIA-NAVARRO: The facility was shut down in 1999 due to lack of funding. Pam, why do you think the story of Carville is important today?
FESSLER: You know, I wrote this before we had the current pandemic, but I have seen so many parallels. And I think one of the biggest parallels is how these tiny unseen microbes can so upend our lives. And it seems - they seem to exacerbate divisions that we already have and expose some of our prejudices.
One of the things that made Carville possible was the fact that people didn't have a lot of information about the disease. So that allowed people to spread disinformation to implement policies that kind of went along with what they thought should happen, such as, we're worried about immigrants coming in, and they may be spreading this disease. And sometimes it leads to very bad public policy.
It turned out that that policy of confining people was completely counterproductive because what it did - they forced people who thought they had the disease or did have the disease to go into hiding 'cause they didn't want to lose their family. They didn't want to lose their freedom. So instead of seeking treatment, they hid.
GARCIA-NAVARRO: That's NPR's Pam Fessler. Her book is called "Carville's Cure."
Thank you very much.
FESSLER: Thank you.
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