In 1894, a man from New Orleans turned up in Iberville Parish. He was looking for a large tract of land, he explained, for an ostrich farm. He managed to purchase the dilapidated Indian Camp plantation, a former sugar cane operation. When he reappeared in the middle of a December night, creeping up the Mississippi river by barge, it was not in the company of ostriches. The cargo of the barge was the lepers of New Orleans, expelled from the city. They were to live in the former slave quarters, and like the residents before them, were forbidden to leave.
The city of New Orleans was panicking over leprosy. The Daily Picayune began publishing lurid stories of “pesthouses” filled with lepers living in unsanitary conditions. A doctor at Charity Hospital had recently begun releasing the numbers and names of roughly 30 patients with the disease, indicating that it was much more prevalent than previously thought. More distressing to the power structure of New Orleans was the fact that some of the patients were white—many people were under the impression that leprosy only affected people of Asian, African, or Middle Eastern descent. Under mounting pressure and panic, the Louisiana state legislature passed legislation in 1892 requiring the quarantine of all lepers in the state. And with Indian Camp, later renamed Carville, the state had found where to keep them.
The mistreatment of people afflicted with leprosy was brutal. In the early 1900s, a Chinese student named Mock Sen was diagnosed with leprosy and placed in quarantine in a train car on the outskirts of Philadelphia. He was sealed in the train car and sent to Baltimore. City officials of Baltimore, who were tipped off regarding his presence and affliction, refused to let him disembark. He was shipped back to Philadelphia, where officials promptly sent him back to Baltimore. After nine days of being trapped in the boxcar, he died.
The disease often began with a telltale numbing of patches of skin, accompanied by lesions or rashes. Hansen’s disease, as it is now called, causes nerve death and results in secondary skin infections. Worse, lack of sensation in the limbs can cause sufferers to not realize when they injure themselves. A tiny cut or a small blister can grow inflamed and fester without the person noticing. Often, these injuries progress to where limbs must be amputated. Lesions can cause severe disfigurement, and muscles can become so weak that the person cannot flex their hands or feet. Blindness is common.
“Leprosy is really two diseases: the physical effects and the social response to them,” wrote Rebecca Solnit in an essay for Harper’s on Carville. Lack of understanding of its transmission, revulsion at the physical effects, and racism resulted in truly horrifying treatment. Diagnosis meant removal from your home, your family. If one refused to be quarantined voluntarily, the authorities were notified and the person was hunted down. People would be arrested and transmitted in shackles to the leprosarium. Terrified people changed their names, changed their residencies, and would not leave the house during daylight to avoid detection.
The stigma followed the sufferers to Carville. Once in quarantine, patients often changed their names to spare their families from the association. Many never saw their families again. Children were dropped at the gates. When patients died, they were buried in the on-site graveyard, with their case file number and assumed name sharing a small headstone.
Carville’s patients came from all over the world. One of the most interesting was Josefina Geurrero, a Filipina from Manila. Once a beautiful and wealthy debutante, she became ill with Hansen’s and was placed into quarantine in 1941. In 1942, the Japanese Imperial Army invaded the Philippines. The leprosarium was closed, and Josefina found herself living on the streets. She soon realized that her illness rendered her invisible to the occupiers. Japanese military police were too afraid to search her, since she was extremely disfigured by Hansen’s. She could freely move through Manila’s streets, passing along messages among resistance fighters, and distributing food and medicine. She was able to draw intricate maps of the Japanese military’s installations and troop movements, and was able to deliver the maps to Allied forces with ease, ensuring that the bombing campaigns against the Japanese were accurate. As a reward for her service in the resistance, the US military sent her to Carville for treatment.
By the mid 1900s, the need to shift the purpose of the leprosarium from a spot of mere quarantine to a hospital was obvious. Federal funds for medical research were allocated. A modern hospital was built. The slave quarters were replaced with cabins. But the fences remained. Inside, patients rebuilt their lives. Some married other patients. Some had children, but the children were taken away from Carville and put up for adoption.
Carville was a prison, but it was also a place of deliverance. Researchers at Carville developed a treatment regimen in the early 1950s, and a cure was not far behind. Further research determined that Hansen’s was very difficult to transmit, and that roughly 95% of the world’s population is naturally immune. By the 1970s, admission to Carville was on a purely voluntary basis.
But patients remained at Carville long after they were able to leave. Many of the older residents had lived at Carville for decades, and did not want to rejoin the outside world. The terrible treatment they received in the wider world did not make them keen to go back. Even today, a handful of patients remain at Carville.
Carville is open to the public. There is a small museum that tells the history of the place, and the history of the disease. Interesting artifacts include currency specific to leprosariums spanning the globe, Mardi Gras floats built by the patients at Carville, and a bust of the actress Tallulah Bankhead. She was a pen-pal of Stanley Stein, a patient who wrote, edited, and printed The Star, a newspaper dedicated to Hansen’s disease. After many years of writing back and forth, Stein wrote to her explaining that the correspondence would be difficult for him to keep up. The disease had progressed to his eyes, and he could no longer see. In response, Tallulah sent him the bust, so that he would be able to run his hands across her face whenever he wished.
The Star is still published today.
The National Hansen’s Disease Museum (also referred to as the Gillis W. Long Center) is located in Building 12 of the Carville Historic District, 5445 Point Clair Road, Carville, LA. The Museum is open to the public, free of charge, Tuesdays through Saturdays, 10 am to 4 pm. For more info, check out hrsa.gov/ hansensdisease/museum