Courtesy of the National Hansen's Disease Museum
One summer night in the ‘fifties, a young man, black by the all-or-nothing contemporary racial standards of the Deep South but actually a native of the Virgin Islands, snuck out of the facility to which he was legally confined. There was a place where the fence didn’t meet the ground, and even with his injured hands, he could wriggle under. This wasn’t the first time he’d left to experience a night of freedom, and he and the other young men who sometimes joined him could easily walk the mile down the road to the Red Rooster, a bar that would serve people like him. For once, that didn’t mean people of color. Simeon Peterson suffered from Hansen’s disease; in harsher terms, he was a leper. He had “escaped” from Carville National Leprosarium.
Today, “leprosy” is a synonym for Hansen’s disease, a bacterial infection that attacks the skin and nerves in outlying parts of the body, leading to injury from the resulting numbness. The affected parts do not “fall off” in accordance with popular lore, but are actually reabsorbed into the body or, sometimes, become gangrenous and must be amputated. Hansen’s disease infects only human beings and armadillos (who got it from us). The connection of this disease to leprosy as it was understood in the ancient and medieval worlds is ambiguous; symptoms described in medieval accounts could apply to any number of other diseases affecting the skin or extremities. The closest connection between the ancient and modern diseases is the stigma. Few modern Americans have known a person with Hansen’s disease, but we all know what it means to be treated like a leper.
The first patients arrived at the Carville site in 1894. The plantation on a curl of the Mississippi south of Baton Rouge had been called Woodlawn by its owner and Indian Camp by everyone else; now abandoned, it was the perfect out-of-sight, out-of-mind place to warehouse those sick with a lingering, taboo disease. The first inmates shivered and sweltered in rough, camplike conditions, which were to some extent ameliorated two years later with the arrival of nursing nuns of the Daughters of Charity. These good sisters would retain a presence at Carville for decades.
Few modern Americans have known a person with Hansen’s disease, but we all know what it means to be treated like a leper.
In 1917, an act was passed providing for the creation of a federal hospital to house leprosy patients subject to any state quarantine law, to prevent states with relatively few cases from having to set up expensive facilities for a handful of people. The project was immediately delayed by the US entry into World War I, but in 1921, with the Kaiser disposed of, the federal government took over the Carville facility, and patients began arriving from all over the United States and its territories to what was now the sole federal leprosy quarantine center in the United States.
Courtesy of the National Hansen's Disease Museum
The first decades of Carville’s status saw relatively harsh conditions. Quarantine was essentially considered a life sentence; some patients saw spontaneous remission, but this was rare. Carville residents could not even vote, barred from the ballot box by a state law disfranchising persons in prisons or institutions. Scientists realize now that the quarantine laws were not particularly helpful as a public health measure. Most people are naturally immune to Hansen’s disease and couldn’t get it if they spent their days nursing leprosy patients and their evenings handling sick armadillos. Susceptibility is genetic; if patients were going to infect anyone, it would be their relatives, with whom they often lived before quarantine and with whom they usually stayed on the occasionally granted two-week furloughs that allowed them to visit home. Fear of infection kept charitable organizations from getting involved, and with few if any residents expected ever to leave, the sick, isolated people at Carville were often forgotten.
Fear of infection kept charitable organizations from getting involved, and with few if any residents expected ever to leave, the sick, isolated people at Carville were often forgotten.
Change came in the 1940s. In 1941, Promin, the first promising treatment for Hansen’s disease, arrived; by 1947, it was a proven if slow cure. Series of photographs in the Carville holdings show patients progressing through treatment; cheeks plump up, lesions heal, and smiles return. A diagnosis of leprosy was now an indefinite sentence, not a life sentence, and new residents could hope to rejoin their families, though people who had suffered the disease longer were still limited by its lasting effects and the fact that they had been institutionalized for years or decades. Carville residents could vote from 1946, meaning that its African-American population was among the first black residents of Louisiana to vote unmolested since Reconstruction.
[Read this: In the Sanctuary of Outcasts: Neil White's memoir of his prison term at Carville National Leprosarium and the fellow inmates and leprosy patients he met there.]
And it was in the ‘40s and ‘50s that Carville’s residents flourished. With a cure now possible, a resident named Stanley Stein started a magazine called The Star, reporting on events at Carville and news about Hansen’s disease; his pen pal, relentlessly glamorous star Tallulah Bankhead, forced her colleagues to buy multi-year subscriptions. (Later, when Stein lost his sight, Bankhead had a bust of herself made and shipped to Carville so he could run his hands over it and “admire her features.”) The little town described in The Star bustled, with residents building new houses, planting gardens, and starting small businesses to sell crafts they’d made themselves, along with “imports” from the outside world. Mardi Gras floats, scaled down to fit on Carville sidewalks but nonetheless elegant, survive in the museum’s holdings, as well as costumes donated by krewes in New Orleans and Baton Rouge. Regulations were relaxed or judiciously ignored among the residents and staff; if Simeon Peterson did the administration the favor of going through the motions of sneaking out for a night, the administration could be selectively blind to the hole in the fence.
Courtesy of the National Hansen's Disease Museum
The quarantine laws were not repealed but were gradually allowed to remain unenforced. The requirements to be released fell from twelve consecutive negative monthly tests to six, then three, then simply a stipulation to be under a doctor’s care. By 1991, there were few enough patients left that the facility shared its space with a minimum-security federal prison; in 1999, plans were made to close the leprosy hospital and transfer the site back to Louisiana. The remaining residents were given three options: to leave and take a $46,000 annual stipend; to remain at Carville as long as they were ambulant; or, for the older and less able, to be transferred to a care facility in Baton Rouge. A number of residents chose to stay, with the last two leaving just two years ago. Seven former Carville patients, all elderly, live at the nursing home in Baton Rouge. The museum was established in the mid-‘90s by a patient-and-staff committee who knew the facility would soon close. The student archivist they hired to help organize their papers and artifacts, Elizabeth Schexnyder, became the curator—she’s the only full-time staff member the museum has ever had.
[Read this: The Unsinkable Ursulines: It took twelve "good gray sisters" to tame the devil's empire, New Orleans.]
Carville’s history showcases the best and worst of humanity. Sick, frightened people were separated from their families and forced to live in harsh conditions; generations later, people in the same situation found a way to thrive under similar circumstances. For many, Carville was a prison, but a walk through the cemetery there shows more to the story. Married couples rest side by side, some buried under the pseudonyms they took to protect their families but next to someone they loved. When I went, there was a fresh grave; one of the residents of the nursing home had passed, and her wish was to be buried at Carville, near her friends.
The Carville site is now a Louisiana National Guard base, but the museum and site are still open for tours 10 am–4 pm Tuesday–Saturday: visitors must show ID at the gate. In addition, there is a monthly guided tour of the leprosarium property; this month, it takes place on October 28. Call ahead for reservations at (225) 642-1950. hrsa.gov/hansens-disease/museum/index.html.
