The Author's Research in China

Life in Isolation
Volunteers rebuild homes and lives in rural China

By Adina Matisoff
This article was printed in Abroad View magazine fall 2006

In southern China’s Guangxi Province, the countryside is playing catch-up with the light-speed socioeconomic development of the more prosperous urban and coastal areas. Government tax breaks and investment, along with aid from international development organizations are helping even the poorest of rural residents to raise their standard of living.

For some, however, poverty is just one more hardship in a life shaped by misfortune and characterized by pain. I recently saw this firsthand while participating in a Habitat for Humanity International volunteer building project to renovate the dilapidated homes of a group of elderly affected by leprosy.

The old houses in the Dingwo Leprosy Rehabilitation Village in Guangxi, China are now used as a barn for animals. Photos courtesy of Adina Matisoff

The Dingwo Leprosy Rehabilitation Village is about a two-hour drive outside of Nanning, the capital of Guangxi Province. It is not a natural village; the Chinese government set it up in 1956 as a holding pen and quarantine zone for people with the skin disease leprosy. Anyone in Fusui County who contracted leprosy between 1956 and 1982 (when a cure for the disease was discovered) was sent to live in Dingwo. Forced isolation was seen as a necessary precaution for the people of Fusui against a disease that was largely unknown at the time and with physical symptoms reminiscent of a horror movie: rotting skin and toes and fingers falling off, leaving life-long scars and nerve damage. Out in the greater community, it was not unheard of for a person displaying symptoms of leprosy to be stoned to death.

Dingwo village is a good distance from the nearest town. The surroundings along the drive to the village look like the sort of rural expedition portrayed in adventure travel brochures: farmers wearing cone-shaped bamboo hats bend over rice patties and sugar cane fields, motorbikes and cargo-laden water oxen jockey for space on the busy roads, while dogs and chickens run about. Life moves quickly against a backdrop of endless fields and tall mountains.

The village is secluded from the hustle and bustle of the main road. It held more than 200 people at the height of the leprosy outbreak in the 1950s and ’60s, but now only 10 remain. Even back in those days it was a bare-bones operation, consisting of two rows of adjoining one-room houses and a hospital building for medical care. Additionally, the government provided residents with a conservative monthly stipend for food and new shoes once a year.

In the 1980s, a cure for leprosy was found and the government finally allowed people to go back to their home communities. Some returned to joyous reunions with family, while others formed little groups and set out to make a life for themselves outside the confines of the village. For many of the residents though, there was nowhere to go. Some had spent as many as 30 years in the village—more than half their lives—and it was the only reality they knew. They were ostracized by their communities and abandoned by their families, who did not understand what caused leprosy and how it was contracted. In the end, 10 villagers stayed behind in the small complex. Over the years it slowly fell to waste.

Eight men and two women between the ages of 67 and 88 remain in the village. They all have sad stories to tell about how they came to live here and about the unexpected twist leprosy inflicted on their lives.
As they squat on wooden stools and chairs in the courtyard enclosed by their newly built houses, they watch with expressionless faces as the volunteers work, taking in the commotion from the sidelines. Three have fake legs that they habitually scratch and tap as they speak. All have some sort of deformity on their hands and arms that make it impossible for them to do the hard farm work crucial to contributing to their communities and families.

An elderly man in the Dingwo Leprosy Rehabilitation Village.

These physical scars, rather than any mental or social disability, are the cause of the villagers’ banishment from normal life and continued ostracism despite the decades since they were cured. The 71-year-old village leader marks this year as the 50th anniversary of his coming to the rehabilitation village. He was just 16 when he was diagnosed with leprosy at a hospital in Nanning; 17 when the government told him he would not be allowed to return home with his mother but would have to go to the leprosy village instead. He cries as he talks about how hopeless he felt during his first few nights in his new home.

Another man with an infectious smile and a Mao cap muses about the what-ifs: what life would have been like if he had not contracted the disease from his cousin when he was 14; if he had not spent 10 years during his teens and twenties living in a hospital; if he had been allowed to hold a job and make something of his life.

Despite the setbacks, he seems resolved to educate himself through listening to the radio and studying everyday. He grins broadly when he tells us that he speaks a little Mandarin in addition to the local dialect.
Others who came to the village later in their lives got a taste of what normal adult life was like before contracting leprosy. One man was married with a baby and had just begun serving in the People’s Liberation Army when he was diagnosed and sent to live in the village. His wife soon divorced him, taking their 10-month-old baby boy with her. He shakes his head, thinking about the adult son he has never seen.

Another villager, a woman from a mountain province, says she knows what he means. She too, was married with children when she was sent to the leprosy village. She can count on one hand the number of times both her daughters have come to visit her in the three decades she has been at Dingwo. She was not completely abandoned, however; her parents invited her home every Spring Festival until they died two years ago. Sometimes they even came to pick her up. She is all too aware of how this disease and the social perceptions of it have squelched any relationship she might have had with her own children.

Dilapidated houses in Dingwo Village.

In each individual’s history is the shared experience of discrimination, isolation and ostracism from the outside world. The volunteers, as ambassadors from that other world, seem to hope that they can undo years of discrimination and bad policy by showering the villagers with gifts. Sharing food and buying new furniture for the TV room brings a taste of the comfortable life to the villagers, but their deep wounds cannot be cured with material things

A government doctor who has been caring for the Dingwo villagers also seems to be trying to right a wrong of the past. He has been an important bridge between Habitat for Humanity and the villagers during every step of the reconstruction project.

The doctor seems intent on impressing on the volunteers that every person in Dingwo is cured. He says they would be able to live in their own communities without any chance of infecting others. It is years of separation and continued stigma that ultimately prevents the villagers’ reintegration back into society.

At the time this article was written, Adina Matisoff was a Fulbright scholar in China. She graduated from New York University’s Gallatin School of Individualized Study in 2003. She concentrated in Chinese culture, communications, and human rights.