An elderly man enters Dingwo village at lunchtime and stops just beyond the large red banner that reads "Habitat for Humanity House Build 2006." Even though he has lived five minutes away his whole life, this is the first time he is visiting the leprosy village. He walks awkwardly over to the tables of villagers and volunteers having lunch and stares down at us. The villagers glance back at him, shifting uncomfortably in their chairs.
I met this man an hour earlier on a dirt road outside this small village of 10 people. At first he was excited to meet an American visiting his rural county of Fusui, but the excitement on his face turned to dismay as I explained the leprosy village reconstruction project that had brought me there. He warned me not to go near the villagers. "You don't want to get sick, do you?" he asked, contorting his hands and pointing at his legs and face for emphasis. I told him they were not contagious, but he did not believe me. I invited him to have lunch with us, but he didn't want to talk to the villagers. He asked the volunteers a few questions about America and then he left.
In 1956 the Chinese government set up the Dingwo Leprosy Rehabilitation Village to separate people with leprosy from the general population. People did not understand how the disease was spread and they were afraid of catching it. More than 200 people lived in the village when the leprosy outbreak was at its worst in the 1950s and 60s.
In 1982 a cure for leprosy was found. The government allowed people to return to their families, but some of the residents found that their families were too afraid of the disease's physical scars to take them back. Others no longer had family to return to. The 71-year-old village leader, Lu Xianwen, was one of the first to live in the village, arriving as a teenager after being treated for leprosy in the hospital. He recalls, "I felt so hopeless, and all I could think about was when I would see my mother again."
Fifty years later ten people are left in the village. They are all between the ages of 67 and 88. The government gives them a small amount of money each month for rice and vegetables and new shoes once a year, but they do not have any means of employment and their houses are in poor condition with broken windows, cracks, and leaks.
The Habitat for Humanity project I was with works with the local government to bring volunteer international high school students to build new houses for residents. The most engaged volunteers learn about leprosy ahead of time. Unlike the man I invited to lunch, they talk with the villagers during lunchtime even though it is easier to just talk with the people they are most comfortable with, like their classmates. This helps them try to understand what life is like for the villagers, and in turn the villagers appreciate the attention and kindness they receive.
As volunteers, we soon learned that more than their run-down housing, the villagers' lives are impoverished because of the discrimination they suffer. Years of forced separation and not enough education by the local government about leprosy keep the villagers from integrating back into life and work in Fusui. We thought that building new houses could not solve these problems.
By the end of the project though, attitudes in Fusui were starting to change. When I returned to visit the leprosy village nine months later, I found that some of the villagers had problems with their new houses. But I also found that our work had a more lasting social impact. "People are not as scared of us anymore. The farmers come into the village; they'll sit and talk with us. That never happened before the volunteers came," said one of the villagers. A local government official agreed, "Everybody knows that a foreign organization is coming to help. They feel like they should also help the disabled people among them."
Today, leprosy outbreaks are uncommon. Another disease is being called the "new leprosy" though, because people are afraid to catch the disease but do not understand how it is spread. It is HIV/AIDS. More and more people are contracting the disease but they are afraid to receive treatment and tell anyone because they do not want to be treated as outsiders like the leprosy-affected villagers have been. A doctor treating HIV/AIDS patients in Guangxi Province says, "Stigma and discrimination are the hardest parts of the HIV/AIDS work."
Some government officials think that isolating people living with HIV/AIDS could be a solution to the problem -- even though that policy was devastating for leprosy-affected people. Instead, they must address discrimination against people with HIV/AIDS before it becomes entrenched in society. I think organizations like Habitat should not only address material and physical needs, but also deliberately choose to promote non-discriminatory projects such as ours that can raise awareness. This could have a much deeper impact on the communities where volunteers work, leaving a lasting contribution that will remain longer than any physical structures we build.
Author: Adina Matisoff.