Successful entrepreneur, award-winning publisher, community pillar and all-around golden boy, Neil White was eager to impress. To keep his expensive luxury magazine business afloat, he began transferring funds he didn’t actually have between bank accounts—a practice commonly known as check kiting—and wound up in federal prison in 1993 on charges of fraud. To White, a sentence of 18 months and a tarnished record meant that life as he knew it was over. But the real shock was yet to come.
On his first day in prison, he learned that he would do his time in the last leper colony in the United States.
In remote southern Louisiana, a federal medical facility known as Carville forcibly quarantined and treated people who had leprosy. Likely one of the oldest and most feared diseases on the planet, leprosy—also known as Hansen’s disease—is a bacterial infection that damages nerves in the skin, nose and eyes. In the 1990s, beds at Carville became available, so the Bureau of Prisons transferred federal convicts to join 130 patients who lived at this bucolic bend in the Mississippi River.
When he was released from prison, White, now 48, owed more than $2 million in restitution payments and child support. He has lost his well-crafted reputation, his marriage and precious time with his two young children. But while incarcerated at Carville, he learned some lessons about living simply and honestly—and he learned them from the most unlikely sources. (Read an excerpt from In the Sanctuary of Outcasts.)
Q. You were in prison. The prison was also a leper colony. When people find out, which of these two facts gets the biggest reaction?
A. Absolutely the leper colony. I have to be careful about bringing it up. First, they don’t believe me. Then they have a thousand questions. A leper means outcast to many. Many highly religious people who believe in the word of the Bible still believe leprosy is a disease of the soul. God’s curse.
Q. What happened when you realized you’d be living with leprosy patients?
A. The first time I saw the patients up close was when my wife dropped me off. I was sitting in the hallway on a bench, and a man, Harry, was waving to me—and he didn’t have any fingers.
I thought, I’ve got to get out of here. I could recover from a short prison stay and rebuild my reputation. But for someone consumed with image, the thought of getting a disease that would disfigure me was unthinkable. I wanted to be transferred.
Q. What did prison officials say?
A. They told us that the leprosy patients weren’t contagious and they didn’t have the disease anymore. But we saw symptomatic patients, people with huge swollen faces, obvious open sores and every once in a while a patient whose leg or arm had to be amputated. They didn’t have the live leprosy bacilli in their bodies. But their nerves were so damaged from the bacteria that they couldn’t feel their hands when, for example, they burned or cut them, and they got infected. There’s nothing contagious about it.
Q. But you didn’t learn this for a while. Was that part of a strategy among the prison officials?
A. They weren’t real interested in keeping us informed, understandably, and it fostered all sorts of fear and misunderstanding among the prisoners. Knowledge is power, and the guards wanted to keep inmates out of that position. There were a lot of smart convicts there. There were some crack dealers, but there were lawyers, doctors, bankers, accountants—people who could use information to their advantage if they got it.
Q. What did you learn from the patients who lived within the same walls nearly their entire lives?
A. Because they’d been labeled lepers—because they were the last people in mainland America to be imprisoned for a disease and couldn’t hide their disfigurement—they had a perspective that you and I can never, never have. We have so many distractions, freedoms and choices. We live in a complicated world.
Q. Theirs wasn’t complicated?
A. They lived in a very monastic world. They loved their routine, they took care of one another, they had simple lives. Money was not a huge concern. They found a way to find happiness in spite of the facts. After chasing all the trophies and accolades of the world that I thought would make me happy, I was 33, in prison and miserable. I found people who’d been there for 60 years with no legs who found contentment.
With maturity comes wisdom, especially among people who’ve overcome as much stigma as anybody in the United States ever has. There’s something to be learned from them. It was exactly what I needed to see.
Q. Tell me about your friend Ella Bounds.
A. Ella contracted leprosy at the age of 12. In 1926, a man the locals called the bounty hunter tried to take her from her one-room schoolhouse and transport her to the leprosarium at Carville. I’ll never forget Ella repeating what a little boy in her classroom said: “Oooh, Ella, the bounty hunter fixin’ to carry you away.”
Her father, a strong sharecropper, stood up to the bounty hunter (who carried a handgun) and didn’t allow the man to take his daughter. But later that week, he took his only daughter to the colony himself in their mule-drawn wagon.
When I met Ella, she was 79 years old and had lost both her legs to leprosy.
Here was a woman who’d spent most of her life in a prison because she was susceptible to a bacterial infection. It made self-pity virtually impossible.
Q. What she had to say really affected you. You write in the book: “She nailed me.”
A. She was almost a mythic figure to me. She had a centered, no-nonsense perspective that eludes most of us, certainly people like me. It’s the kind of wisdom reserved for those who have endured great physical and social suffering.
I said to her, “I’ve always spent inordinate amounts of time and energy to make people think I’m perfect.”
Ella responded, “Well, you ain’t got to worry about that no more.”
Q. Ha! I recall a moment when Ella told you that “what other people think about you ain’t none of your business.”
A. I try and remember it. I have to tell you that the publishing of the book challenges me.
Q. Especially with all your accolades from big writers.
A. Yeah! I always wanted to write this story for my children, if for no other reason. All the lessons in the book—living simply, not caring what people think, not seeking recognition—I didn’t want to veer toward those issues again. I want to pay close attention this time not to get caught up in it. So I am painfully aware that publishing this runs counter to many of the lessons in the book.
Q. Another thing runs counter to expectation: The patients at Carville stuck up for you, a criminal, and their right to be your friend when the prison guards told you not to talk or socialize with them.
A. They weren’t treated like inmates by the people who ran Carville by the time we got there, but they had been treated that way in the ’30s, ’40s and ’50s. Then, the caretakers baked their mail. They took away their babies if they became pregnant. The patients weren’t allowed to vote until the late ’40s. They remembered and reached out to us. I felt honored.
Q. You say that it was a bit like meeting dinosaurs.
A. They really are the last of their kind. No one has the experience that they do in the continental U.S. I feel so bad for those who contract this disease. I think the stigma is worse than the physical aspect. If you got it and were on treatment, would you tell people?
A. So you’d live this secret, this lie. My friend Harry said he always got bombarded with questions the few times he’d gone outside the walls to a restaurant. He’d explain he was burned or in an accident, but really got tired of fibbing. It’s heartbreaking to think about and totally unnecessary.
Q. What do we need to know about leprosy—Hansen’s disease—today?
A. We’re at almost no risk of contracting it, at least in the United States. There are only about 200 new cases here a year, and the vast majority are immigrants who’ve contracted the disease in another country.
Still, there is no vaccine. If you have been infected with the bacteria, there’s no test to find out. You don’t know you have it until you become symptomatic, and it has a long incubation period, like three to 20 years. There are about 6,000 people in the United States who have it, and about 3,500 of them are treated with medication. No one would ever know they have it.
It’s a mysterious and scary disease. No one knows how it is transmitted. Of the few indigenous cases, almost all are found in southern Louisiana and south Texas, where people have had contact with armadillos.
Q. What is Carville like today?
A. In 1999, the patients moved to Baton Rouge, where the research center for Hansen’s disease is now located. But 20 or so refused to leave, including Harry. The buildings were sold to the National Guard of Louisiana to use for juvenile delinquents, but they let those patients live in an isolated corner. Sixteen patients still live there; one just turned 100. They’re all self-sufficient medically. A museum about Carville’s history and Hansen’s disease opened after I left.
The prison was only fully operational for two years and closed eight months after I was released.
Q. You promised you’d ask yourself the hard questions while you were at Carville. Did you?
A. Yeah, I did. I asked myself how I could have been so blinded by my own drive, my own desire for success, and hurt so many other people who loved and trusted me. Not just my kids and wife, but my mother, my friends, bankers, other relatives. I had to take a hard look at what I’ve done without excuses, without spin.
Q. You cut yourself little slack in the book.
A. You cannot move forward until you have made a true confession or it will weigh you down forever. When I came back from Carville, I felt compelled to tell people what happened or I would be committing another fraud. When I did that, people started opening up, telling me some things that happened to them—about their divorce, an accident they caused, something they were ashamed of. My conversations become so much more rich and real.
Q. Have you been able to make it up to the people you cheated?
A. I’ve made amends in all sorts of ways, and I plan on sharing proceeds of the book with those I hurt and those who helped me. I don’t know if you can make up fully for the hurt. It’s a lifelong process.
Q. Are you thankful you spent time at Carville?
A. Absolutely. In writing the book, I consulted my kids, my ex-wife, my parents about this very public confession. They all loved hearing the stories over the years and thought it was a good thing to do. Neil and Maggie, now college age, said, “Dad, we don’t care that you lost $2 million, spent time in federal prison, don’t care you lived with lepers, just please don’t get a Facebook page.”
Carol Kaufmann is a contributing editor atthe AARP Bulletin.