For millennia, a diagnosis of leprosy meant a life sentence of social isolation. People with the disease now known as Hansen’s disease – a bacterial infection that ravages the skin and nerves and can cause painful deformities – were generally uprooted from their families, inundated with prejudice and cruelly exiled in permanent quarantine.
In the United States, patients were confined to a handful of remote facilities, where over time, a coarse existence evolved into one with little touchstones of normality. However, patients were systematically deprived of basic civil liberties: working, moving freely and seeing their loved ones, voting, raising their own families. Some children who have had their babies forcefully removed.
In the 1940s, after the emergence of a cure for the disease – and science clearly established that most people were naturally immune to it – other countries began to abolish policies of compulsory isolation. But in the United States, even as the health and condition of leprosy patients improved, old stigma, fear of contagion and outdated laws kept many people confined for decades.
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Banned in Hawaii
A small number of Hansen’s disease patients are still in Kalaupapa, a leper colony established in 1866 on an isolated but breathtaking land spit on the Hawaiian island of Molokai. Thousands lived and died there in the intervening years, including a later canonized saint. But by 2008, the colony’s population had dropped to 24 – and by 2015, only six remained full-time, despite a long recovery. Now in the 80s and 90s, many residents first arrived on the island as a child. They knew no other life.
“When they came here, the law guaranteed them a home for life, and this cannot be taken from them,” Doctor Sylvia Haven, doctor at the island hospital, Told The New York Times in 1971. For some, this “house for life” was more closely translated to a prison, however picturesque it may be. “You were brought here to die,” said Sister Alicia Damien Lau, who first came to Molokai in 1965, in an interview in 2016. “You could not leave the island.”
While the families of the patients could visit them, they were housed in separate quarters and could only communicate through a fence. “They catch you like a crook and you have no rights at all,” wrote longtime patient Olivia Robello Breitha in her 1988 autobiography. “They didn’t care about wasting a life … I didn’t was just a number. ”
Kalaupapa was one of a handful of leper colonies in the United States. Among them, the tiny Penikese Island of Buzzard’s Bay, off the coast of Massachusetts, and the national leper colony in Carville, Louisiana. With nearly 8,000 patients over approximately 150 years, Kalaupapa was by far the largest.
The “separation disease”
Named after Gerhard Armauer Hansen, the Norwegian doctor who discovered the bacteria in 1873, Hansen’s disease continues to infect people around the world. In 2015, approximately 175 cases were reported in the United States. In the worst cases, the bacterial infection damages the skin and nerves, leaving patients numb and susceptible to injury. The affected parts of the body sometimes become gangrenous and must be amputated or reabsorbed in the body.
“Separation sickness” has long been considered incurable. Despite the historical connotations of sexual irregularity, leprosy is usually spread by saliva or, more unusually, by contact with an armadillo. (There is good evidence that what we call leprosy today may in fact not have the same condition. described in ancient texts.) About 95% of people are naturally immune, while those who get the infection can be easily treated with a cocktail of cheap antibiotics. To this day, however, the intense stigma that surrounds leprosy continues to prevent patients from seeking simple care that can end terrible disfigurement.
During the decades preceding the discovery of the treatment, the American government sought to isolate the bacterium by a policy of separation of the patients. In 1917, about 50 years after the Kingdom of Hawaii began sending patients to Kalaupapa, the government federalized the Louisiana Leper Home in Carville, Louisiana, which was run by nuns from Daughters of Charity. The first out-of-state patients arrived in 1921.
Life in these communities could be extremely lonely, with few rights and no opportunity to leave. In Kalaupapa in particular, the patients led a bittersweet existence. On the one hand, they were forced to live in isolation, far from their lives and their families, under perfidious and insurmountable sea cliffs. Most died within a decade of their arrival. But on the edge of the Pacific, against a backdrop of incredible natural beauty, many have lived a happy life, between softball games, church worship and even dances. Nearly 1,000 couples on the island were married between 1900 and 1930, some with children. Unfortunately, the babies were taken from their mothers and raised elsewhere.
Conditions in Carville during the first decades were difficult. When the establishment was first established in a swampy and malaria-prone area outside of Baton Rouge, the afflicted were first housed in former slave huts, where they trembled and choked at the the seasons. Their lives were initially linked by fences – a separation that separated the male side of the campus from the female side (since gender interactions were strictly prohibited) and a large iron fence to thwart the many escape attempts. There was even a prison on site to punish runaways, who were sometimes brought in leg irons. And the patients had to sacrifice their very identity: upon arrival, they were immediately encouraged to take on a new name to protect their families from the powerful stigma of the disease.
A remedy and a slow movement towards normality
Ultimately, a hospital was built on the Carville site, and the focus shifted from a culture resembling incarceration to one more focused on treatment and research. And after the 1940s brought a cure, some restrictions began to loosen during isolation. In 1946, patients were allowed to vote again. Over time, a vibrant community developed as residents married, built houses, planted gardens, published a magazine, started small craft businesses, and even enjoyed a Mardi Gras festival the size of ‘a pint.
Yet official government health policy regarding the confinement of Hansen’s disease patients has changed at an icy pace, with individual facilities relaxing their restrictions for decades before federal laws finally caught up with science.
Patients have been free to leave Kalaupapa since 1969; 30 years later, the remaining Carville patients had the choice between moving, with an annual allowance of $ 46,000; stay at the facility; or be transferred to a home for the aged. In both cases, many chose to stay, having got used to it. The New York Times described in 2008 as “the counterintuitive twinning of loneliness and community”. Here, in isolated outposts they may never have chosen, the other patients, health workers and pastoral staff have become families. And for the latter remaining, these distant places have become something close to home.