The stigma and lack of understanding of the disease shaped every facet of life for patients there, who started their own businesses, founded a newspaper, and had their own softball league.
All photos by the author
The drive out of New Orleans on I-10 West toward Iberville Parish snakes across wetlands carpeted in velvety green algae. Eventually, the marshes give way to truck stops, a Tanger Outlet, a Logan's Roadhouse, and a flat, unremarkable highway, punctuated with the occasional desiccated husk of an armadillo. Beyond the interstate, there's the ugly metallic tangle of industrial plants. Beyond those, fields of sugarcane. And beyond that, tucked in a bend of the Mississippi River, there's a fenced-in, guarded compound that's borne many names over the years: the Louisiana Leper Home, the National Hansen's Disease Center, now the National Hansen's Disease Museum. Throughout its history, most people—locals and patients alike—have just called it Carville.
Carville's verdant 350 acres, originally hunting land belonging to Houma natives and subsequently a working sugar plantation, welcomed its first patients as the Louisiana Leper Home in 1894. "After years of effort, Louisiana has now reached a solution of its leper problem and is now gathering all its lepers, several hundred in number," reads an 1895 dispatch from the Catholic Standard newspaper. In light of the surrounding community's disgust for having a "leper colony" in their midst, the newly established Leper Board surreptitiously ferried in their first seven patients by river barge in the middle of the night.
Over its century-long tenure as a treatment facility, research center, and quarantine, Carville was home to more than 5,000 patients, many of whom were forcibly quarantined and institutionalized by law and spent the majority of their lives inside the compound. A thousand deceased patients are still there, buried on-site.
Until 1960, any American diagnosed with leprosy was legally mandated to sever their connections to society and live in confined isolation until receiving medical clearance—a rarity and a gamble until the current multi-drug therapy treatment for leprosy (now referred to as Hansen's Disease) was developed at Carville in the 1950s. Upon entering Carville's iron gates, patients reported to their modestly furnished dormitory rooms, received their government-issued clothing, and, for the most part, surrendered their autonomy and their lives as they knew them. (The facility's rules included a curfew and of course forbade patients from "leaving their enclosure.") None of them knew when or if they'd ever return home.
The facility, which still housed residents up until a few years ago, now acts as the National Hansen's Disease Museum, operated under the Department of Health and Human Services. Curator Elizabeth Schexnyder grew up in the area and joined as a volunteer in 1997, when there were still roughly 150 patients in residence. She is tasked with preserving, archiving, and exhibiting the roughly 22,000 artifacts the facility has accumulated over the years, from moulds of patients' disfigured hands to obsolete medical supplies like wicker coffins and rickety hand-cranked wheelchairs. As a museum, Carville's purpose is to honor patients and, primarily, to educate the public. It's a Sisyphean undertaking, demystifying a disease that has been stained with meaning and myth (for the records, limbs do not "fall off"). For millennia, leprosy has been universally stigmatized as a gruesome curse and a public menace, quite literally adding insult to injury for those who suffered it. "Many of us learn about leprosy from the Bible or some other religious outlet," Schexnyder tells me. "It had a stigma of being more than a disease, more like a curse from God or a judgment. Like if you hadn't sinned, you wouldn't have this problem."
That stigma, coupled with a lack of understanding about how the disease is contracted, shaped every facet of life for patients at Carville, especially before the scientific breakthroughs of the midcentury. Money within the property was regularly sanitized with chemical fumigation, and patients were forbidden to engage with the traveling peddlers who sidled up to Carville's fence, for fear of circulating unclean cash. (Schexnyder tells me that other leprosaria around the world even developed their own unique currencies to reassure surrounding communities that tainted coins wouldn't spread.) Outgoing mail was baked in a 300-degree oven for half an hour before leaving the grounds. Even Carville's layout was designed to keep patients sequestered from staff. "We have two of everything here," Schexnyder says: two golf courses, two infirmaries, two cafeterias, two sides of a campus divided (initially by a wall, and later, a hedge). Even the seating inside Carville's chapel was segregated to separate the sick from the well. Two confessionals flank the altar, one for personnel and one for patients. Throughout the facility's long history, no employee ever contracted the disease.
Fear was the salt in the wound of a leprosy diagnosis, and it meant that patients were ostracized from the rest of the world as their families were ripped apart. Schexnyder tells me that most of their patients were in their 20s and 30s when they arrived at Carville, with twice as many men diagnosed as women. Children under the age of 16 weren't allowed on the property for visitation. Schexnyder tells me about one woman whose young daughter was regularly smuggled in to see her by hiding underneath a rug inside the family's car.
Patients frequently assumed pseudonyms at Carville to protect their families back home, but if a diagnosis became community knowledge, those families often suffered. "Marriages ended, businesses failed, siblings were taken out of school," Schexnyder explains. She regularly encounters visitors who discover Carville after researching their own genealogy. "I get to talk to a lot of patients' families who are finding out they had relatives here… there's usually one family member who was tasked with the memory and told not to give it up until they were on their death beds." Sometimes, research calls into question a family narrative that just doesn't add up: a great-grandfather who supposedly moved to Cuba or took a job on a railroad. "Then they find out he was a patient at Carville. He died here. He might even be buried here."
Often, a community's reaction to a diagnosis turned violent. Schexnyder points to a folk-art painting on the wall, a modest cottage engulfed in flames under a night sky. "This took place 30 miles downriver. The artist's wife was a patient here as well. This is what happened to her family home."
Even in death, stigma haunted patients: quarantine laws applied to corpses, too. Carville was required to disinfect dead bodies, seal them inside a metal-lined coffin, solder them shut and lock them inside a tight wooden box. Should a patient's family wish to bury him or her back home, the body could only be transported with permission from each health department of each state it would travel through. That's one of the reasons Carville's two cemeteries are so full, Schexnyder tells me. Much of the time, it was just too difficult to send people home.
Carville was often witness to agony, but it was also a place where life continued to unfold anyway: a functioning civilization in miniature. As the facility became globally recognized, other nations sent patients to Carville for treatment. "It was like a little United Nations," Schexnyder says. Enterprise was encouraged by the government and thriving among the patients, many of whom had previously served as their family's primary breadwinner. One patient opened a barber shop; another worked as an on-site seamstress. Johnny Harmon, a patient who later self-published a memoir titled King of the Microbes, acted as a sort of unofficial Carville documentarian, taking pictures and selling them on 35-millimeter slides as souvenirs to visitors. The patient-produced newspaper, the STAR, has a prolific archive and is still maintained today.
Faced with an open-ended exile and a fair amount of free time, Carville patients reconstructed facsimile versions of their old lives. A notorious hole in the fence allowed some to periodically sneak out and duck into town for a beer. Holidays were taken very seriously, Schexnyder says—especially Mardi Gras, celebrated with a parade through Carville's two and a half miles of covered walkways so that bedridden patients could still see the festivities from their infirmary rooms. One of the most striking artifacts on display in the museum is a small float stylized as a red Chinese dragon. From a distance, it looks like a miniaturized version of one you might see promenading through the French Quarter on Fat Tuesday. A closer look, though, shows that the float is constructed from the occupational therapy department's casting and bandaging material. It's precisely sized and shaped to fit over a wheelchair.
The parades, the trophies from softball games (all home games, of course), the homemade costumes—Carville's museum is a pretty incredible testament to the human spirit. It's also disturbing proof of how fear, misinformation, and stigma can metastasize around illness and those who suffer from it. Carville patients not only fought a life-altering diagnosis, they were forcibly cast out by their own communities. For those lucky enough to return home, the outlook wasn't much brighter. Even a patient given medical clearance and allowed to return home faced "new rules of life," wrote Dr. Faget, the medical officer in charge at the time, in a 1943 edition of the STAR. "He must not expect to go out into the world and cope with his fellow man on equal footing. It may be difficult for many patients to adapt themselves to these conditions on the outside after their long siege of institutional confinement."
Faget goes on to warn about the risks of taxing the body or overindulging for patients with arrested cases. "You do not want the misfortune of having to return for a second treatment," Faget continued. "It will be more difficult the second time."
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