by Kitty Kelley
Pam Fessler, an award-winning journalist with National Public Radio, covers poverty, philanthropy, and voting issues. Prior to her 27 years at NPR, Fessler was a senior writer at Congressional Quarterly. She holds a master’s degree in public administration from the Maxwell School at Syracuse University. Carville’s Cure: Leprosy, Stigma, and the Fight for Justice is her first book.
We’re experiencing a national pandemic with covid-19. Do you see any similarities between this and what occurred with leprosy 100 years ago?
Definitely. I wrote the book before the pandemic, but I’ve been struck by all of the parallels. As with the current coronavirus outbreak, the threat of leprosy was used to demonize certain groups of people, especially Asian immigrants. Now, we have talk of the “China virus” and “Kung flu.” Then, there was “Oriental leprosy” and “leprous hordes of Asia” threatening the nation’s health, even though most patients at the turn of the century were native born. Disease has often been used as a weapon against those we consider “others,” and that doesn’t seem to have changed.
The other thing that hasn’t changed is how ignorance about a disease can open the way for misinformation, allowing people to respond to their fears rather than the science. People didn’t know at the turn of the century how leprosy — also called Hansen’s disease — was spread and that it was only mildly contagious.
They reacted instead to common myths about leprosy as depicted in the Bible and elsewhere. The disease was seen as a sign of sin and moral inferiority, so victims became social outcasts rather than people to be treated and cured. Without good information and leadership, people let their biases guide their response — even if it’s ultimately harmful — as many are doing today with covid-19.
Until 1999, the U.S. ran a leprosarium in Carville, Louisiana, where people with leprosy were confined against their will and deprived of such basic rights as voting, marrying, and keeping custody of their children. They were even strongly encouraged to change their names. Please explain why people with a bacterial disease that affected only five percent of the population were so shunned.
I think it was for the reasons mentioned above, that the misperception of leprosy as a moral disease was so ingrained. People with serious cases of the disease could also be repulsive to look at, so others preferred that they be hidden away. Added to that was a general fear that immigrants were bringing exotic diseases into the country, and the public wanted the government to do something about it. No one knew at the time that 95 percent of humans were naturally immune to leprosy. Some doctors suspected that was the case, but their voices were drowned out by public (and media) hysteria.
The solution was to send the patients far away and isolate them from the rest of society, in the hope that the disease would disappear with them. But the strategy backfired. The possibility of being confined for life scared anyone who thought they might have the disease from seeking treatment. Instead, they hid their ailment and continued to live in their communities until the disease got so bad, they suffered permanent damage to their limbs and organs. If they were going to infect anyone else, they had probably done so long before they were diagnosed and sent away.
Why do you think leprosy carried a greater stigma than syphilis, tuberculosis, and other far more contagious and dangerous diseases? And still does to this day?
It wasn’t only the Bible that shaped attitudes toward leprosy (and, ironically, scholars now believe that what’s called “leprosy” in the Bible was actually some other skin ailment). One of the most popular books in the late 1800s was Ben-Hur, which described in great detail the horrible fate of Ben-Hur’s mother and sister, who both had leprosy. Also, around this time, the famous Catholic priest Father Damien died of leprosy after working with patients at a colony in Hawaii, feeding widespread fear that the disease was highly contagious. In fact, he was one of the few healthcare workers to ever die of the disease. In its 100-year history, not one worker at Carville contracted leprosy.
Even though syphilis, tuberculosis, and other diseases were far more contagious and dangerous, the families of those sent to Carville often told friends that they had gone away because they had TB or mental breakdowns, or even had died — because anything was preferable to admitting someone had leprosy! Even today, about half the patients admitted to the National Hansen’s Disease Program say they contemplated suicide when they learned they had leprosy, even though it’s easily cured. Patients still suffer more from the stigma than from the germ.
Why did the federal government assume the expense of maintaining a national leprosarium? The 350-acre facility in Carville has since been turned over to the state of Louisiana, but has there ever been another such facility in America?
There was growing pressure on the federal government to open a leprosarium in the early 1900s so patients would have somewhere to go — and could also be locked away. States at the time didn’t know what to do with people who had leprosy, which led to bizarre and tragic results. A young Syrian immigrant in West Virginia, who was diagnosed with the disease in 1906, headed to New York so he could return home. He was apprehended by authorities on the way and locked in a boxcar of a train, but no state would allow him to either get off or cross their borders. He ended up being shuttled from one state to another and finally dumped off in West Virginia, where he soon died.
Not long after, a man named John Early was diagnosed with leprosy in Washington, DC, and confined in a tent on the banks of the Potomac because authorities didn’t know what to do with him. Hundreds of people came to catch sight of the man who would become known as the nation’s “most famous leper.” Early ended up imprisoned on and off for years.
He finally forced the government to act by escaping and emerging at a fancy Washington hotel to announce that a “leper” had been mingling with important people, including the vice president of the United States, who lived at the hotel. That very same day, members of Congress introduced legislation to create a national leprosarium. Early’s story — covered by newspapers across the country — is one of my favorites in the book.
You write that, at the age of 78, your father-in-law called your husband to reveal a “family secret.” Please elaborate on that secret and how the phone call affected you.
My father-in-law called one night to tell us something he’d kept a secret for more than 60 years. When he was a teenager in New York, he came home from school one day to find that public-health officials had come and taken his father away because he had leprosy. My father-in-law never saw or talked to his father again and wasn’t sure where he had been taken, other than to “some hospital” down South. His mother had also told him never to tell anyone that his father had leprosy because the stigma was so great it could ruin the family.
As an elderly man, my father-in-law decided he needed to unburden himself of this secret. His revelation led us to discover that the federal government ran a leprosarium in Carville, Louisiana, where his father and other Americans had been confined — often against their wills and until they died — simply because they were ill.
When we took my father-in-law down to visit Carville, I realized his story was one of many. Thousands of families had been torn apart and lives destroyed because of this much-misunderstood disease. I also realized that what happened at Carville was not only tragic, but amazing because of the way the patients ultimately fought to regain their freedom and rights. That’s when I decided to write this book.
Why were Catholics, more than any other religious denomination, so involved in caring for those with leprosy?
In the case of Carville, it was because the government couldn’t find anyone else willing to do the job. When it was initially the Louisiana Leper Home, the state brought patients to this remote site and basically left them to fend for themselves. Eventually, the Daughters of Charity sisters were recruited to go there and provide nursing care. When the federal government took over in 1921, the U.S. Public Health Service decided to keep the sisters on to care for the patients, noting that it would be difficult to get public-health nurses to work with leprosy patients because it might destroy their chances of getting jobs elsewhere. That’s how pervasive the stigma and ignorance about the disease were at the time.
I think there is a religious aspect, too. Some of the sisters saw it as their mission to care for both the patients’ bodies and their souls. There were complaints from some of the Protestant patients — especially John Early — that the sisters (who he called “nun-nurses”) were trying to convert everyone to Catholicism. An investigation uncovered some proselytizing, but the federal government decided to keep the sisters on because, again, they had little choice. The Daughters of Charity turned out to be incredible caregivers, as well as strong patient allies.
In the book, you reprint a photo of “Patient No. 746,” Stanley Stein, kissing the actress Tallulah Bankhead. Please explain the importance of Stein, born Sidney Levyson, and his relationship to the actress.
To me, Stanley Stein is the key character, and heart, of Carville’s Cure. He arrived at the hospital in 1931 as a young, ambitious man whose life was unexpectedly derailed by this disease. He was appalled by what he found at Carville: listless and apathetic patients resigned to their fate. Stein was determined to change that.
Among other things, he got permission to start a patient newspaper, the Star, which grew over time from a few mimeographed pages of patient gossip to an internationally known publication that led the fight for the rights of leprosy patients around the world. Articles written by patients questioned government policy and chronicled the latest scientific and medical developments. It pushed to eliminate use of the words “leper” and “leprosy” — in favor of Hansen’s disease — to counter the stigma of the disease.
Stein was not only hardworking and smart, but extremely astute at using people to advance the patients’ cause. He recruited celebrities, including Broadway star Tallulah Bankhead, to broadcast the patients’ message to the world. Stein even had Bankhead getting all of her show-business friends to subscribe to the Star, which grew to have more than 80,000 subscribers in 150 countries.
Stein had other allies, too, including one of the Daughters of Charity, Sister Catherine Sullivan, who encouraged his advocacy and was frequently heard to say, “Mercy is no substitute for justice.” If for no other reason, people should read this book to learn about Stanley Stein.
How is Carville, Louisiana, connected to James Carville, Bill Clinton’s campaign manager? Why was that particular place selected for a national leprosarium?
Carville is a tiny hamlet in a remote area of southern Louisiana along the Mississippi River, 20 miles southeast of Baton Rouge. The town was named after James Carville’s grandfather, who was the postmaster and ran the general store. Over time, the hospital — which had many names, including U.S. Public Hospital No. 66 — became known simply as Carville.
The federal facility dominated the small community, and James Carville says it provided employment for many residents and a source of pride. He thinks its presence helped shape the person he is today by exposing him to doctors and researchers who came there from around the world. James Carville says residents used to brag that the town had more doctors per capita than Rochester, Minnesota, home of the famous Mayo Clinic.
The site was selected for the national leprosarium because the federal government couldn’t find any other community willing to accept it. The remote, mosquito-infested property was not well suited for caring for sick people, but it was removed from populated areas — which is what a fearful public demanded. Still, Louisiana officials told neighbors at first that the old plantation was going to be turned into an ostrich farm so they wouldn’t resist creation of the state’s new “leper home.” James Carville’s grandfather was a 10-year-old boy who watched the first patients arrive by river barge in 1894 and realized that no ostriches were coming.
How does your book differ from others on the subject, such as The Colony: The Harrowing True Story of the Exiles of Molakai by John Tayman, and Stanley Stein’s Alone No Longer: The Story of a Man Who Refused to Be One of the Living Dead?
Tayman’s book tells the story of a leprosy colony established in Hawaii in the mid-1800s. There are many similarities in how the patients were treated there and at Carville and the injustices they faced. The difference is that the Carville leprosarium was run by the federal government, and patients came from around the country throughout the 20th century. Carville’s Cure tells the story of the tragedy of how people with leprosy were treated in the United States, but also how they fought back to regain their rights, freedom, and respect.
Carville became a major medical-research facility where the cure for leprosy was discovered, another integral part of the story. Stanley Stein’s memoir provides many wonderful details about the patient crusade he helped to launch, but Carville’s Cure tells much more about what led up to that campaign and what happened after. My family’s personal story is also woven throughout the book.
What’s your next book?
Ha! I told anyone who asked that the one thing I learned writing this book is that you have to be extremely passionate about the topic or you’re not going to finish the job. I promised my father-in-law before he died that I would write this book because I felt so strongly about the need to tell this story. I saw how the Carville experience had shaped and destroyed so many lives. I’m not sure I’ll ever find another topic quite so compelling, but who knows?
Crossposted with Washington Independent Review of Books