By the spring of 1894

By the spring of 1894, the question of what to do with the lepers of New Orleans had apparently become an urgent one. A decade earlier, a bill had been introduced in the Louisiana State Legislature suggesting the state pay $10,000 per year (about $275,000 in 2017 money) in total for housing, treatment, food and staffing - the last of which seems to have been solely one Dr. J.C. Beard, who already helmed a city “pest-house” established for the quarantine of smallpox patients. It didn’t pass, apparently due to testimony from physicians and legislators who had found the pest-house conditions substandard, with spoiled food, dirty lodgings and insufficient clean water – although it seems like no alternate plan was agreed upon, either, until 1892, when the state decreed that those found suffering from leprosy should be confined to the pest-house anyway.

“Thus,” reported the Daily Picayune in 1894, “this pest-house came under the patronage of the State of Louisiana; but the state has never given the least concern or attention to it, and beyond causing the arrest and deportation to what has become peculiarly an abode of misery, the State has never given the slightest consideration to the pest-house or to its wretched inmates.” The same report included the text of a petition to the legislature, signed by eleven leprosy patients living in the pest-house, pleading “that you make a thorough examination and get at the bottom facts, revolting as they may be, if it will only give us redress.”

“We are,” it closed, “human, after all.”

For the rest of the year, the Picayune ran one or two stories a month about the leprosy problem, which seemed like a disproportionate amount of ink for, really, not a lot of lepers. The number of patients reported varied from ten, in the first piece mentioning the pesthouse, to twenty-five, according to a presentation given to the Orleans Parish Medical Society on June 9, 1894, by a Dr. Isidore Dyer - whose title was given as president of the state leper board. Possibly it was the fear of the disease, with its biblical overtones, mysterious epidemiology and disfiguring symptoms - all factors that contributed, surely, to the petitioners’ feeling that they needed to remind the state that they were, in fact, human – that caused the paper to respond with such an attentive mix of Christian charity and urgent concern. Throughout the year, various spots on the outskirts of the city were proposed for quarantine sanitariums. And finally, on the last day of November 1894, seven patients were transported up the Mississippi River via barge – Picayune reporter and illustrator accompanying, on the tugboat – to their new home, a disused sugar plantation called Indian Camp and now known as the Louisiana Leper Home. 

The boat ride took a little less than twelve hours in 1894. Late on a spring morning in 2017, it took about an hour, mostly on Interstate 10 West. Contemporary travelers can zip along the highway until turning off next to an outlet mall just before hitting Baton Rouge and then driving the River Road for a few miles, beside a grassy hump of river levee on one side and on the other, a lot of things that seem like they were tucked away out of sight on purpose: chemical plants, mobile homes, and a small cemetery for the unclaimed remains of inmates from the nearby Dixon and St. Gabriel state prisons. 

The unincorporated community where the former leprosarium, now a museum, still stands is named Carville, after Louis Arthur Carville – its onetime postmaster and the grandfather of Democratic politics personality James Carville, who was born there in 1944. The old Indian Camp is now an installation for the Louisiana National Guard, and visitors have to show ID to armed soldiers before passing through a checkpoint onto the campus, where uniformed personnel scoot purposefully along paved and manicured paths in golf carts. 

Aside from that, plus some modern-looking signage, the grounds still look a lot like they must have when Walter Chin, a teenage Chinese immigrant, arrived in Carville from New York City in 1951. Chin’s father, who had fought for the Allies in World War Two, had begun the process of bringing his family to America in 1948 - sons first, then daughters – to escape the pernicious poverty of Guangdong Province. Life in the Bronx was tough – the whole family crowded together in a small space behind his father’s laundry, heated by a coal stove – but Chin loved the adventure of the city. He liked taking the subway to his new school, and learned English quickly with the help of comic books like Blackhawk, a DC title about a group of ace World War Two fighter pilots. (“I loved aviation,” he said, “and space and the cosmos and the galaxies.”) 

When Chin was 14, he developed red bumps on his arms, legs and face that wouldn’t go away. The doctor he visited identified what was by now more often being called Hansen’s disease, after the Norwegian physician who identified the bacterium M. leprae in 1873, and sent him off to Carville. The December 1894 feature in the Picayune had declared that the new hospital would be “a lovely home,” “where every comfort is at hand,” and according to Chin (now 82) it really was fairly pleasant--especially for a teenager happy to get away from his large family in their small apartment.  “I didn’t even ask my father,” he said. “I just wanted to get away. I [was] sick and tired of being yelled at all the time.” 

Chin lived in one of the dormitories built beside the original plantation structures designed by the prolific antebellum architect Henry Howard, white building with green roofs connected by long, covered walkways that patients would traverse by wheelchair or, if they were more mobile, sometimes by bicycle. He studied in a patient-only schoolhouse and played dominoes, cards and chess with other Chinese patients who grew Asian vegetables in a plot outside the dorm. He read a bimonthly magazine called the Carville Star, founded and edited by a Texas pharmacist named Stanley Stein, who had come to the hospital after his own diagnosis in the late ‘30s; it ran features on everything from advances in Hansen’s disease research to new habits that the Daughters of Charity, the order of nuns that had nursed Carville patients since 1896, were wearing. There was a Boy Scout troop, a golf course, a man-made lake stocked with fish, and a baseball field where the Carville patient team played other local teams. Because of the quarantine, the recorded tour guide on a CD provided by the museum notes, the patients “always had the home field advantage.” 

Covers of The Star, from 1941, 1943, 1947 and 1949. Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Covers of The Star, from 1941, 1943, 1947 and 1949. Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Covers of The Star, from 1941, 1943, 1947 and 1949. Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Covers of The Star, from 1941, 1943, 1947 and 1949. Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection

Adult patients could also work at Carville, which came in handy for quarantined former breadwinners still in touch with their families. They earned money assisting the Daughters of Charity and the regular medical staff as orderlies and as drivers for less-mobile patients. There was also a certain spirit of entrepreneurship: in 1953, the Star reported, the Public Health Service gave permission for patients to start small businesses, which at that time included a barbershop and beauty salon, a newsstand, photography, repairs for radios, bicycles and scooters and even a dry cleaner. Chin remembers that he picked and sold pecans. 

Because Carville was one of very few

Courtesy of The National Hansen's Disease Museum, retrieved from Public Health Image Library

Because Carville was one of very few residential hospitals for Hansen’s disease in the world – the only other one on U.S. soil was on Molokai, in Hawaii – it was also an internationally diverse community. Its housing and other facilities were desegregated in 1948, when the U.S. military was. (An early-‘60s issue of the Star reports that it had to alert outside softball teams, who were okay with sharing the field with leprosy patients, that at Carville, they would be playing on a racially integrated field.) By time Chin arrived, patients grouped themselves together in dorms by nationality; he credits his time in the Chinese dorm with his retention of his native language.

Leprosy or Hansen’s disease is a bacterial infection that primarily affects the skin and the peripheral nervous system. Symptoms, like Chin’s skin lesions, take a long time to appear. He almost certainly caught it as a child, before his family moved to the United States; while close to 95% of the human population is naturally immune to the disease, its incidence is much higher among those living in poverty. And contrary to decades’ worth of popular perception and bad jokes, it doesn’t cause body parts to fall off; rather, it destroys sensation in the extremities, putting them at risk for repeated injuries and secondary infection. Amputation used to be a common solution for battered and infected fingers, toes, hands and feet, and a lot of Carville’s innovations were practical, mechanical ones. The museum there displays hand-cranked wheelchairs that kept numb fingers away from spinning wheels, thick, specially balanced shoes for insensate feet, keys with heads the size of saucers, angled spoons and forks and from later years, lots of Velcro. 

Courtesy of The National Hansen's Disease Museum, retrieved from Public Health Image Librar

But more importantly, Carville broke ground with drug and therapy techniques. Betty Martin, a New Orleans debutante exiled to the hospital in 1928, titled her bestselling 1950 autobiography Miracle at Carville, after the hospital’s discovery that certain sulfa compounds were effective in arresting the disease’s progress, in the early 1940s. In the mid-‘60s, two married doctors – orthopedic surgeon and former missionary Paul Brand and his wife Margaret, an ophthalmologist – moved to Carville and spent the next two decades making tremendous advances in treating Hansen’s-related deformities of the hands and fingers, resulting in a nearly 100% reduction in amputations. (A biography of Dr. Paul Brand was titled Ten Fingers for God.) 

In 1971, a research team made another important discovery: that the nine-banded armadillo could be infected with the bacteria (and in fact, that armadillos carry the disease in the wild, making the handling or consumption of raw armadillo meat a risky activity.) The animal’s long lifespan made it a desirable lab animal for the slow-acting disease, and Carville established an onsite armadillo farm. The animal also became a sort of a patient mascot: an armadillo-shaped float, a relic of patient Mardi Gras parades, now greets tourists at the museum door.

Walter Chin’s timing was lucky, all things considered. He was treated with the newly-discovered effective therapies early enough to avoid any significant problems with his digits (he learned to play the piano at Carville, he said, and still plays today) and when he was declared healthy enough to leave the hospital, after the required twelve negative skin biopsies, he went right back up to New York, where he eventually married, had a daughter (who writes graphic novels herself, not unlike the Golden Age comics that helped her dad learn English) and still lives. 

Other Hansen’s patients were hardly so fortunate. There’s a room in the Carville museum, remade to approximate a typical patient bedroom, and decorated with original or replica art by former patients. A painting there by artist Jimmy Harris, who arrived at the hospital in 1935, depicts a rural Louisiana farmhouse in flames. The work was inspired by the real backstory of the fellow patient who eventually would become his wife: when her parents discovered her diagnosis, they burned their own home to the ground for fear of contagion. The post office once overseen by James Carville’s grandfather would bake the mail coming out of the hospital at high heat, in ovens, as a hopeful prophylactic. Gardens, like the patch of Chinese vegetables Chin remembered, were lavishly edged with borders made from glass Coca-Cola bottles – not because the patients particularly liked them, but because they had so many. The local distributor wouldn’t take the returnable bottles back once they’d been to the hospital. The posting to Carville was the only one a Daughter of Charity, who had taken a vow of poverty and obedience, was allowed to refuse. Patients weren’t permitted to vote until 1946. Even as late as Walter Chin’s trip to the hospital, after the discovery of the sulfones and the knowledge that casual transmission was unlikely, he spent his long train trip from New York to South Louisiana in a locked rail car, attended by a guard. 

Courtesy of The National Hansen's Disease Museum, retrieved from Public Health Image Library

The patients also couldn’t leave. Some snuck out, through an infamous “hole in the fence.” Betty Martin did, in order to marry another patient, with whom she lived on the lam for five years until his illness flared up and they had to return. (There was an on-campus jail, where escapees were held for 30 days after recapture.) By the early ‘50s, regulations that had previously outlawed any fraternization between the sexes were relaxed, and small houses were built for married patient couples on the grounds, between the dorms and the cemetery. But there were limits. No children of patient unions could be raised at the hospital. If they didn’t have family or friends on the outside, which often, because of the stigma, they did not, the babies were put up for adoption. Heather Hampton, whose father worked at Carville in the early sixties and early seventies as a physical therapist, got her medical care on the grounds through her dad’s employer, the Public Health Service. Her strongest memories are of the starched, swooping wing-like hats worn by the nuns, the strangely antique-looking hand-cranked wheelchairs, and her shock, as a child, of seeing the more disfigured patients. 

“But also,” she said, “just experiencing their absolute childlike joy at seeing me. They would roll up in their wheelchairs and just ooh and ahhh over me. I mean, I was just a regular kid. It’s not like I was anything special. But they never really got to see kids.” 

In case there was any doubt

In case there was any doubt, for patients, that they were entering a life of shame, that was corrected by the first question they were asked by the nun welcoming them to the hospital: “What do you want your name to be?” Betty Martin, Jimmy Harris and Stanley Stein, who used the Star to fight for tolerance and awareness – all those names were pseudonyms, chosen to help erase the trail between respectable life and Carville. Just short of a thousand patients are buried in one of two cemeteries on the grounds, and many of the markers bear those aliases, along with an identifying number. Several times a month, according to the museum, visitors on genealogical quests come looking for answers, having hit a dead end at the old plantation on River Road. Staff can match the numbers up with medical records and privately recorded real names, and solve the family mysteries. 32 of the graves are marked with American Legion stars, identifying the military veterans buried there.

Heather Hampton’s childhood memories coincide with the post-armadillo years, when things started to progress quickly at Carville. In the late ‘70s, quarantine regulations were relaxed, and living at the hospital became a voluntary thing. In 1981, Hansen’s disease was officially designated an outpatient diagnosis. Things loosened up: along with the softball league, the hospital also hosted a tournament where players from the community could golf alongside patients. Musicians played small concerts, in the cafeteria. One of those, incredibly, was Big Star’s Alex Chilton, who was living in New Orleans. Another guitarist that he played with sometimes had visited Carville and set up the gig. Rene Coman, who played bass with Chilton, remembered that they played a loose set of New Orleans R&B covers until the patients started asking to join in. 

“This guy gets up and he doesn’t have any fingers on his hands anymore,” Coman said. “He was a small Asian guy, and I remember it was a Shure 57 microphone, which doesn’t have a ball on it, it’s just very straight. He held it between his two palms, and he sang the song ‘Feelings,’ and he sang it like it was the last thing he was ever going to do in this world.’” 

Without the legal quarantine, the residential population at Carville started to decrease. In the early ‘90s, the armadillos got moved to the school of veterinary medicine at Louisiana State University in Baton Rouge. At about the same time, the hospital – now under federal oversight and called the Gillis W. Long Hansen’s Disease Center – partnered with the Federal Bureau of Prisons to house minimum-security inmates there, though that didn’t last very long. (Neil White, a magazine publisher who served time there for bank fraud, commemorated it in the memoir In the Sanctuary of Outcasts.) Four years after its 1994 centennial, Congress voted to move the hospital to Baton Rouge.

Plenty of patients, like Walter Chin, had been happy enough to go back to life on the outside when their health was improved or when quarantine was lifted. But for many, particularly elderly patients who had lived most of their life at the hospital, there wasn’t necessarily much to go back to. Some had amputations and deformities that would draw stares anywhere but at Carville. If their families had cut them off in disgust or fear years ago, if they hadn’t had children or had given them up in accordance with the old rules, there was nobody out there to care for them late in life. Life at the hospital was the life they knew.

So the government gave them a choice: if they needed full inpatient care, they could come to the new hospital in Baton Rouge. Or, if they were ambulatory, they could remain at Carville and receive a stipend for treatment and therapy, as well as their lodging and food. The Daughters of Charity stayed at the hospital and continued to serve their mission until 2005, and many patients stayed longer. According to the museum, the last two Carville patients were still in residence up until 2015. One moved into assisted living at the Baton Rouge hospital. The other, Simeon Peterson, transported to Carville from the Virgin Islands in 1951, passed away. At the end of his life, he had served as a docent, of sorts, for the museum. 

The gravesites on the Carville grounds are within sight of the lake and mostly as stark and uniform as a military cemetery, a spread of little white rectangles. Few look visited: the ones that do bear some mark, a devotional candle or a few flowers, are newer tombstones with varying designs, bearing hearts or angels or endearments like “mom.” The freshest bouquet, on a recent spring day, belonged to a former patient who was born in 1928 and buried as Dolores Rigual, in January of 2017.

Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection
Courtesy of The National Hansen's Disease Museum, retrieved from Louisiana Digital Library Collection

Alison Fensterstock is a writer in New Orleans, where she has worked as a staff critic and reporter for the alt-weekly Gambit and the daily Times-Picayune. Her writing about American music and culture has appeared in Pitchfork, Rolling Stone, NPR Music, the Oxford American and other places. She also writes a quarterly column for the Louisiana Endowment for the Humanities about the more esoteric and eccentric history of that very interesting state.