China has pledged to improve living conditions for the 20,000 leprosy sufferers living in its 600 state-run colonies. The country will consolidate the residents in 100 dedicated areas to offer better facilities and medical treatment. What’s life like in a Chinese leper colony?
Pretty quiet. Most of the leprosy communities were built on islands or mountaintops, cut off from the rest of society and reachable only by a strenuous hike. Between 25 and 100 people live in each village, occupying straw or mud-and-brick (PDF) houses built around a central courtyard. The average age among residents is 60 years old. Some are blind and bedridden; others lost fingers, toes, or entire limbs to the disease. But able-bodied villagers farm small plots and raise fish in ponds. (They get the rest of their food from visitors or buy it from itinerant peddlers using government money.) Some residents open up small tea shops or offer tailoring services if their disability allows.
Social activities take place in the colony courtyard, where residents gather to share meals, play mahjong and backgammon, or smoke from water pipes. Visiting schoolchildren offer occasional choral concerts, and traveling barbers are a big draw. Some communities have been connected to the electrical grid in the last few years, so there are also some shared televisions.
Only about 3 percent of the residents of a leprosy colony are infectious. The rest have been successfully treated but suffer lingering effects of their illness. There are also 5,000 healthy spouses and children who live in the settlements. Overall, the communities have been shrinking since the government stopped forcibly isolating patients in the early 1980s. Any resident can leave at any time, though many have remained in their settlements for decades. Some have lost touch with their families, so they have nowhere to go. Other more severely disabled patients rely on their neighbors and medical workers for food and treatment.
Forced isolation of leprosy sufferers has existed at least since the days of the Old Testament, as Second Chronicles describes a king who must separate himself due to a skin disease, and Numbers counsels the Israelites to “put out of the camp every leper.” Special colonies were very common in the Middle Ages, with more than 19,000 existing in Europe in the 13th century. Segregation of leprosy sufferers ebbed and flowed for a few centuries, until a Norwegian doctor named G.H. Armauer Hansen convinced the government that quarantine was the best way to prevent transmission. (Hansen was the first to isolate the leprosy-causing bacteria and is the source of its official name—Hansen’s disease.) Other nations soon made mandatory isolation a government priority. The United States opened its first major center in 1894 in Carville, La. In 1917, Congress passed a law that would force sufferers into isolation. The United States detained its last leprosy patient in 1960, although federal regulations allowed mandatory isolation until 1974.
The experience of U.S. patients wasn’t quite the same as the experience of those in China. Carville looked very much like a normal American town in the 1920s. After an initial period of tight restrictions, patients were permitted to go home on annual leave, a near-impossibility in many of China’s mountaintop settlements. Patients who identified the disease early and hadn’t been disabled by it played sports in the park. They operated Laundromats and bicycle repair shops, and ran a volunteer fire department. But Carville wasn’t exactly a resort. For example, patients were strictly barred from marrying or sharing beds. One couple who married while on leave stayed on the lam for six years. When they finally returned to Carville, the husband spent 30 days in the colony jail.
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Explainer thanks Jim Oehrig and Sarah Hesshaus of American Leprosy Missions.