I especially enjoyed this panel presentation at the Tennessee Williams Festival - "Kept In, Kept Out: The Haunting Secrets of Carville, Louisiana." The three panelists had each written about the leprosy treatment center and home at Carville, and I had read each of their books.
- Marcia Gaudet, author of Carville: Remembering Leprosy in America. Marcia is a professor of English at the University of Louisiana at Lafayette. She writes from the point of view of an outside researcher.
- Jose P. Rodriguez, Jr., author of Squint: My Journey with Leprosy. Jose had leprosy and was a resident of the treatment center at Carville for seven or eight years. He is now a social worker in Houston and takes every opportunity to educate people about leprosy.
- Neil White, author of In the Sanctuary of Outcasts. Neil is a publisher in Oxford, Mississippi. He was at Carville as a federal prisoner in the early 1990s, when the federal government operated a minimum security prison on the Carville grounds. Neil White's crime was kiting checks, an illegal way of trying to help his business grow.
I learned so much from reading the three books and attending this presentation. Below, I will try to give highlights of what I learned.
LEPROSY. Many people have an unreasonable fear of leprosy. These fears are unfounded. Leprosy is only very minimally contagious. Most people have a natural immunity to it. In fact, medical personnel and others who serve leprosy patients do not get leprosy. There have only been one or two exceptions to this over the years. If left untreated, leprosy will damage nerve endings so that a person no longer feels pain and will cause bones of the fingers and toes and nose to retract. However, leprosy is easily treated now with drugs on an outpatient basis. People who receive treatment experience no disfigurement and actually become free of the disease.
I would ask anyone who fears leprosy to compare its contagiousness with that of the bubonic plague during the Middle Ages. If someone in the village contracted bubonic plague, soon nearly the whole village had bubonic plague, and in the end, half or three-quarters or all but a handful of the villagers would be dead. You never hear of this with leprosy. When one person in the village got leprosy, you never hear of it spreading to the whole village. There has never been an epidemic of leprosy as there often was of bubonic plague.
HANSEN'S DISEASE. This is the preferred term for leprosy. It uses the name of the Norwegian doctor Gerhard Armauer Hansen, who isolated the bacterium that causes leprosy. It was thought that using the term Hansen's disease would eliminate or decrease the stigma attached to the term leprosy. However, as Neil White points out, this backfired because people felt that the term Hansen's disease was being used to mislead them. People often reacted like this: This person is trying to fool us by saying he has Hansen's disease. What he really has is the dreaded leprosy.
THE L-WORD. The L-word is leper. It is very hurtful for a person with leprosy, or Hansen's disease, to be called a leper. The word leper has a whole overlay of negative associations. It identifies a person as being the disease: instead of having leprosy, one is a leper. The term leper is associated with being unclean, with being cast out as unfit for society, with being the lowest of untouchables, with humiliating physical disfigurement, with contagion, and even with moral depravity.
If I learned one thing from the three books and the presentation it is this: Never, never refer to a person with leprosy as a leper. Not everyone at the presentation heard this clearly enough, though. During the question and answer period after the panel's presentation, one audience member raised her hand and asked a question about living in the leper colony. This is equivalent to asking an African-American about living in a nigger neighborhood.
BLAME. People with leprosy often feel blamed for their illness. I think it is Marcia Gaudet who, in her book, mentions a man in the early 1900s who was "charged" with leprosy, taken into custody, and sent to Carville. Charged with leprosy?
It was certainly easy to feel that one was being punished for having leprosy. One was taken away from one's family and forced to live isolated from the rest of society at Carville. In some cases, the resident at Carville was never again contacted by his or her family, who considered their family member with leprosy to be as good as dead.
Perhaps because of the harsh treatment prescribed for persons with leprosy in the Bible and because of the severe physical disfigurement in advanced untreated cases, leprosy has somehow been associated with moral depravity. After all, does not the Bible seem to punish those with leprosy? And might not their bodily disfigurement mirror a deformity of soul?
Jose Ramirez saw this in the devastation of his parents at his diagnosis of leprosy. Both Jose's mother and his father came to Jose separately to beg his forgiveness, with tears, for the unknown evil they had done to cause God to punish them through Jose, their son. Many years later, Jose's father died still believing that his sin had caused his son's illness. It took a special blessing from the Pope to convince Jose's mother, in her old age, that she had done nothing to cause leprosy in Jose.
THE HOLE IN THE WALL. The residents at Carville sometimes left the leprosy center, temporarily or permanently, through the hole in the wall. There was an actual hole under the fence surrounding Carville, allowing the Carville residents to escape. Sometimes they crawled under the fence and walked over to a hut on the levee for an evening card game - just to be outside the grounds. Sometimes they had a friend or family member pick them up by the hole and drive to a nearby town for an evening out. And sometimes they went through the hole and lived outside for a long time.
It seems that the administrators of Carville knew about the hole in the wall but closed their eyes to it, perhaps seeing it as a healthy escape valve for the residents.
ARMADILLO. The armadillo is a special animal for those with leprosy. The nine-banded armadillo is the only animal known to be susceptible to the disease. Therefore, the armadillo has been used in research for the treatment of leprosy. Those with leprosy honor the armadillo. The armadillo's image is imprinted on the doubloons that were thrown in Carville's annual Mardi Gras parade.
LIFE AT CARVILLE. Isolated from the rest of society, residents at Carville created a society of their own. They had sports teams and special interest groups of all sorts. There was an extensive library. The residents published their own newspaper, the Star. Every Mardi Gras, there was an elaborate parade put on by gorgeously costumed residents as well as a masked ball.
When Jose Ramirez arrived at Carville at age twenty, some of the older residents took him under their wing and served as surrogate parents.
The Daughters of Charity served the residents with great love and kindness, and a compassionate priest was assigned to the church at Carville.
Nonetheless, especially in the earlier part of the twentieth century, some of the rules at Carville caused suffering for the residents. For example, when a woman gave birth to a child at Carville, the child was taken from the mother and given up for adoption. The mother had no say-so in this.
Jose Ramirez points out that the need for social services wasn't recognized at Carville. Residents often arrived at Carville in a traumatized state. They had just received a dreaded diagnosis and had been removed abruptly from their familiar surroundings and deposited at a leprosy center. No help was offered for the psychological aspects of dealing with these painful changes.
THE PRISON. In the early 1990s, a minimum security federal prison operated at Carville. With the possibility of outpatient drug treatment for leprosy, no new residents were coming to the leprosy center and the number of residents was decreasing. The government decided to open a federal prison on the grounds. This is how Neil White came to be there as a prison inmate for kiting checks.
At first, Neil was incensed to learn that he would serve his prison term at a leprosy center. He thought, I deserve to serve time for the wrong I did, but being imprisoned on the same grounds where people have leprosy is inhumane. No way do I deserve to be exposed to people with this hideous disease.
But then Neil got to know the residents with leprosy, largely because he was often assigned work duty in their dining room. He was very impressed with their kindness, their acceptance of their situation, their interesting personalities, their aliveness. He began to see the presence of the prison from their point of view. He thought, Who is being exposed to whom here? What an insult it must have been for the residents of the leprosy center to be told that they would have to share their grounds with criminals like us.
MUSEUM. Today the National Hansen's Disease Museum is housed at Carville. I intend to visit it.