China¡¯s Leprosy Villages

[Randy W]

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Scarred Lives: The Lasting Hurt of China’s Leprosy Villages

Quarantined in far-flung settlements decades ago, many residents are now elderly, disabled, and burdened by biting poverty and lingering discrimination.

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China’s leprosy villages have a complicated legacy. Officials credit them with helping to check the spread of the disease and laying the foundation for its eventual eradication. The country’s leprosy rates fell from 5.6 cases per 100,000 people in 1958 to just 0.1 cases per 100,000 people in 2009, according to medical journal The Lancet, which estimated there were just 6,600 people with the disease as of 2012. Most onetime leprosy village residents have reintegrated into society.

But the impressive statistics mask the tremendous human cost that government responses to leprosy have exacted over several decades. To prevent the disease from spreading, most settlements were placed in remote, sparsely populated areas, cutting residents off from the outside world. And to speak with many older residents of leprosy villages is to hear tales of lives ruptured by state-sanctioned separation, youngsters spurned by communities deeply fearful of the disease, and futures ruined by ill-advised government bans on getting married and having children.

The latter policy doomed the young Tao’s marriage to the man she loved, Li Xiao. When she was diagnosed with leprosy at 18, Tao had recently wed Li and moved into his family home in rural Yunnan. The young couple was looking forward to a happy future together.

But Tao’s diagnosis shattered those dreams. Unable to bear the thought of a childless union, they divorced in 1963. “We were both still so young — like two just-risen suns,” Tao says. “I couldn’t ruin his prospects. I divorced him so he could have a different life with someone else.”

In 1960s China, there were few effective treatments for leprosy. Many people, including Chinese officials, mistakenly thought the disease was fast-spreading, incurable, and transmissible from mother to child during pregnancy. These beliefs shaped a powerful social stigma against people with leprosy and implicitly coerced them into moving to leprosy villages — also often the only places in the region where the government made specialist care easily accessible.

In fact, leprosy isn’t highly contagious. Though it’s not known exactly how the disease spreads — scientists think it is transmitted by inhaling particles from an infected person’s coughs or sneezes — it takes months of close contact with untreated individuals to do so. Transmission does not take place through sexual contact or from a mother to her unborn child. Anti-leprosy medications have been available since the 1940s, and today most patients treat the disease through multidrug therapy.

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Manwangdong Village, Yunnan province, March 26, 2019. Wu Huiyuan/Sixth Tone

Much of Manwangdong is eerily quiet, so we park and wander toward the only activity we can see: a group of around 10 people building a small pigsty. A middle-aged woman introduces herself as the daughter of two people admitted to Manwangdong with leprosy several decades ago — “but our generation doesn’t have the disease,” she quickly clarifies.