A Village Scarred

by Jessica Shor:

Wang Zhidi sat on the dirt terrace outside his mountaintop home in Ta’erdi, gazing over the river that cuts through the verdant valley below. The sun shone on his two chickens, picking through the chili peppers he had set out to dry on the ground. The only sound was the whisper of the summer breeze that cools this pocket of rural Sichuan. Throughout southwestern China, there are hundreds of bucolic villages like this one, nestled amongst hills dotted with mud huts and farmers tending their crops.

But Wang did not move to Ta’erdi for the clean air and pristine landscape. He does not live, as so many people in China do, on revered ancestral lands, passed down through his family for generations. Instead, government health authorities sent the 63-year-old to Ta’erdi to be quarantined from the healthy population when he contracted leprosy more than 30 years ago. Although he was cured of leprosy in the 1980s, Wang claimed he has left the village fewer than a dozen times since he arrived, and he ekes out a living farming corn, cabbage, and sweet potatoes to eat, and tobacco to sell. Earning 3,000 Yuan each year—about $500—Wang supports himself and two orphans whose parents died of leprosy several years ago.

Wang Zhidi (right) has had leprosy for over 30 years. (Shor/TYG)

“Life here is very difficult. It is often bitter,” Wang said. But he doesn’t need to say it. Ta’erdi’s steep paths and eroding soil, Wang’s gnarled hands, the limping gaits of other villagers: They tell the story of China’s 605 leprosy villages for him. Leprosy first appeared in China more than 2,500 years ago, and it has been feared and stigmatized for just as long. This stigma stems more from the physical disfigurement leprosy causes, most notably skin lesions and deformed extremities, than from high levels of contagion. Roughly 95 percent of humans have a natural immunity to the disease, and if it is caught early enough it is curable for the five percent who are susceptible.

Prior to 1949, foreign missionaries administered leprosy hospitals in China. When Mao Zedong came to power, however, government health authorities took over efforts to record and treat cases of leprosy. They took a characteristically harsh, systematic approach that established leprosy villages like Ta’erdi and exiled infected individuals from cities to the countryside.

Though exact numbers of village residents are unavailable, 475,000 cases of leprosy were reported in China between 1950 and 2000. Southwestern provinces like Yunnan, Guizhou, Guangxi, and Sichuan—impoverished, sparsely populated, and inhabited largely by ethnic minorities—became prime locations to quarantine an estimated 200,000 leprosy patients. For decades, the government forbade the patients from leaving these villages.

Wang, the Ta’erdi resident, claimed that this is how he arrived at his scenic yet isolated home. Before he contracted leprosy, he was married, had two children, and worked in a small coal plant. “I was just your regular, common person,” he said. “I worked, raised a family, participated in political exercises, and had a normal life.” But in 1977, Wang got sick. Patches of his skin became rough and discolored, and he felt weak. He attributes his leprosy to something he ate, but leprosy cannot be transmitted through food. More likely, he contracted leprosy from somebody close to him. When health officials conducted an annual survey of his work unit and discovered his leprosy, they did not explain to him the nature of his disease, but ordered him to Ta’erdi nonetheless.

“When I arrived, there was nothing here,” Wang explained, sweeping his gnarled hand across the valley before him. He estimated there were fewer than 50 people living in the hills around Ta’erdi, mostly members of the Yi ethnic group. “They didn’t help us much, and the government didn’t give us anything. No wood to build houses, no farm tools, no seeds.” Wang was relatively lucky: Five years after his diagnosis, health authorities cured Wang through multi-drug therapy. Yet for residents, life in the village was—and still is—a daily struggle to produce enough food to sustain themselves, an undertaking  complicated by their physical disabilities from the disease.

Min Zhou, a researcher at the Chinese Academy of Medical Sciences’ Department of Leprosy Control, explained that the initial push to cure leprosy largely succeeded. Health workers in all the counties with leprosy used the drugs. Rural or near urban areas, rich or poor, either way. Basically all the leprosy patients were cured,” he said. Both Min’s research and World Health Organization surveys conclude that at the national level, leprosy now occurs at a rate of less than one infection per 100,000 people; China has reached the official level of elimination. Today, treatment efforts have ended and residents of  leprosy villages have the right to come and go as they please.

But official elimination has not cured Ta’erdi of its ills, and official permission to reenter cities has not made it easier to leave.

In her research, Min found that roughly 71 percent of residents in China’s leprosy village—more than 13,000 people—suffer from physical disabilities. Half of those disabilities are so severe that the individuals cannot care for themselves, especially in villages like Ta’erdi, where the steep hillsides and narrow paths render even walking an arduous task.

For assistance, Ta’erdi’s disabled residents rely on younger relatives, but those individuals face their own unique set of problems. Wang’s young neighbor, for example, has an infant son who suffers from a cleft lip.

“I tried to get treatment,” the neighbor, Su Kaiwen, said. She recalled the two-hour hike, half-hour boat ride, and six-hour drive on unpaved roads required to reach the closest hospital. “But once I got to the doctor, he said the surgery would cost 3,000 Yuan. That’s how much income I earn in a year, so I couldn’t afford it.” Among other Ta’erdi residents, stories abound of births on mud floors, untreated broken bones, and new outbreaks of leprosy in the village.

It is not only the difficulty of travel that keeps Ta’erdi residents in the village and away from medical care, but also the massive social stigma that leprosy carries in China. The visible scars of the disease make blending in difficult. “People stare at you,” Wang said, describing his trips out of Ta’erdi. “Shop owners won’t hand goods directly to you, and little kids point.” This shame has prevented Wang from seeing his wife and children in the 30 years since he arrived at Ta’erdi.

Like most Ta’erdi residents, Su and Wang receive government welfare stipends, but they total less than five dollars per month. And whereas health officials visited the village twice a month during the 1980s and 1990s, Ta’erdi has not received a visit from government health-care providers in more than two years. “They got rid of our leprosy, but then they abandoned us,” said Wang. “We’re still sick. All of us are still sick. But there’s no help here.”

Ignored by the government and cut off from population centers, villages like Ta’erdi are served primarily by NGOs, which provide medical supplies, preventive care, and treatment from volunteer doctors. They implement basic development projects as well. “We seem the same thing over and over,” explained Yuek Ming Poon, the China Country Director for Leprosy Mission International, the world’s largest NGO focusing on leprosy treatment. “Better transportation has improved quality of life somewhat, but otherwise we’re the only support many of these villages receive.”

Residents of China’s leprosy villages are well aware of the opportunities in cities that elude them as social and economic barriers keep them in the hills. While a liberalizing economic climate has raised hundreds of millions of Chinese out of poverty, gaps in income and services between urban and rural areas have increased sharply in recent years. Those disparities spark an estimated 500 protests each day across China.

Wang does not envision Ta’erdi becoming a site of protest, since residents face daily struggles just to survive. That lack of political incentive may be why the government has ignored these villages after the initial leprosy elimination effort. Whatever the reason, Wang sees the current state of places like Ta’erdi as indicative of broader government failures.

“I had a normal life, but the government put me here because of my disease, and now I’m stuck. Now the kids also grow up stuck here.” He pointed to his chickens, which have abandoned the drying chili  peppers in favor of grubs in Wang’s sweet potato field. “I have two chickens, some potatoes, and three mouths to feed. Now we need the government again, but where is it? It’s not here.”

Jessica Shor ‘13 is an Anthropology major inEzra Stiles college. Contact her at jessica.shor@yale.edu.