Out of the Darkness
Habitat China reaches out to leprosy-affected persons, creating community

Story and photos by Mikel Flamm

Determined Not to Give Up

Warmth of the Sun

All You Need

Hope after Desolation

Outside the iron gates of the Dingwo Leprosy Rehabilitation Village in Guangxi, southern China, a group of elderly men and women sit on a concrete bench under the trees, enjoying the shade and the refreshing afternoon breeze. Their surroundings are a picture of rural tranquility, fields of rice, corn and sugarcane giving way to low-lying mountain ranges. The occasional villager cycles down the unpaved road.

Such serenity was far from Lu Xianwen's mind when he was sent to Dingwo as a frightened young man of 21 more than 50 years ago. Diagnosed with leprosy, Lu was sent away from his home village. In those days, people were fearful that a person with the disease would infect the village. Lu spent his first night in Dingwo in a cold, dark cave where several other leprosy-affected persons lived, some of whom had been there for years. "The next day," Lu recalls, "I collected some bamboo and leaves and made a simple shelter. I told myself I would never stay in the caves again."

Lu's gaze turns to the Dingwo houses recently completed by Habitat for Humanity China. "It is hard to believe we have these beautiful houses to live in," the 71-year-old village leader says. "For years, we lived in mud brick houses that were on the verge of collapse.

"We have all come a long way to this point in our lives," he adds with a smile. "We now have peace of mind."

When Habitat for Humanity and its partners began to work with leprosy-affected persons in China in 2002, it spelled a new lease on life for many who had been scarred--physically and emotionally--by the disease. To date, Habitat China, in partnership with like-minded organizations, has completed 155 safe and decent houses for 177 leprosy-affected people in villages similar to Dingwo that are scattered throughout the country's southern provinces of Guangxi, Yunnan and Guangdong.

Leprosy is a chronic, mildly infectious disease that attacks surface nerves in certain areas of the body. Fingers and toes lose their feeling and are easily injured; leprosy can cause deformities, disabilities and even blindness if left untreated. The disease was once endemic in China, but has been largely eradicated for many years.

The World Health Organization estimates that 120,000 people in China have been disabled by leprosy, with an estimated 1,600 new cases reported annually. Approximately 800 leprosy communities still exist in China. In July 2006, Chinese health officials unveiled a national plan in response to a rising number of new leprosy cases in certain parts of the country. Under the plan, the Ministry of Health aims to identify new cases over the next five years and to eradicate the disease in five provinces, including Guangdong, where HFH China works, between 2008 and 2010.

Stigma and misunderstanding have played a key role in keeping people affected by leprosy in seclusion. Due to a lack of understanding--leprosy is not hereditary and is not transmitted through casual contact--people who are affected often have been ostracized by society and even expelled from their own communities. Half a century ago, leprosy-affected people in China like Lu had to leave their own home villages and settle in remote mountain villages, caves or on islands. Social stigma was prevalent, and many had to contend with misconceptions--even destructive behavior--from fearful neighbors in surrounding villages.

In the late 1950s, the Chinese government began to address the rising number of leprosy cases. In Dingwo village, mud block houses were constructed along with a simple clinic to treat the growing numbers of leprosy-affected persons who were sent there. Although individuals affected by leprosy were allowed to return home once they were cured of the disease, the stigma remained, and the patients were not easily accepted. Many stayed behind in Dingwo as they were not welcomed in their home villages or had no home to return to. The villagers began farming, growing vegetables and raising chickens to supplement the little money they received from their monthly government allowances.

"We learned to survive as best as we could," says Lu.

Habitat's ties with Dingwo started in late 2005 when Bryan Withall, Habitat China's program adviser in Guangxi Province, visited the community with representatives from the local government, The Leprosy Mission International, and the electrical engineering and electronics company Siemens.

"The old houses were in very poor condition," Withall says. "The tile roofs were broken and leaked when it rained. The four walls were crumbling. Most of the people had chickens living in the same rooms with them. A polluted pond, located next to the village, was their water source for all these years."

The Dingwo project was the first build by Habitat China's Nanning-based Guangxi office. When Withall asked how the villagers could help with repayments on their houses, he found that they were willing and able. "I was surprised when they told me they could afford eight yuan (US$1) out of the 140 yuan that they receive each month from the government because they live on a very tight budget," he says. "This gives them the satisfaction of knowing that they are helping to pay for part of their homes."

Habitat constructed 10 brick rooms, one activity room, two toilets/washrooms and a first-aid room around a spacious courtyard. A tube well was installed with two water tanks located within the village. Each house has its own water tap and kitchen.

Standing next to the brick shelter for Dingwo's water pump, Lu pats the side. "We need to place a sign on this water pump that says, 'Every time we drink this fresh water, we owe great thanks to Habitat for Humanity.'

"We never wish for anyone to feel sorry for us," Lu adds. "We live here as a family now. For years, we all felt we had nowhere else to go. Now we know there are people who do care for us."

Habitat projects in other villages have included rebuilding, renovating and improving existing housing structures, as well as constructing new rowhouses and making general improvements. Partners in these efforts have included the American Leprosy Mission, The Leprosy Mission International and Bless China International, as well as China's Disabled Persons Federation and the country's Center for Disease Control and Prevention.

New work will focus on extending the relationship into the coastal Guangxi Zhuang autonomous region, where Habitat and The Leprosy Mission International launched a joint project in the autumn of 2005. To date, the partnership has constructed seven homes with people affected by leprosy and is looking to build another 12. The partnership is expected to focus on community development and micro-enterprise projects as well as addressing housing for leprosy-affected families and others with physical disabilities.

In Yunnan, Habitat hopes to assist 40 people in two leprosy rehabilitation villages with their shelter needs before June 2008.

Elsewhere in China, Habitat has worked on a 24-room project for 48 people in Chagen Leprosy Rehabilitation Village, Guangdong. In addition, Habitat China has recently partnered with the Guangdong Lions Club for future projects. The goal for the three-year Habitat-Lions Club association is to build 100 houses in 2007 and 2008, with more than 150 houses planned for 2009 in partnership with leprosy-affected and disabled persons.

"Our partnership with Habitat is good because we are working toward the same goals," says Guo Deqin, president of Lions Club Guangdong and director of the Disabled Persons Federation of Guangdong. "Our goal, just like Habitat, is to see poverty housing eliminated so working together on this project is very important."

Beyond the improved living environment, there is another tangible benefit for the leprosy-affected people whom Habitat helps. "Our foreign volunteer builds also help change the attitude of local people who become more accepting of the leprosy-affected people in the community," says Chan On-fat, program director for HFH China.

Equally touched is Windy Xie, HFH China's project coordinator at its Yunnan project office. "Although the leprosy-affected people are mostly old and find it hard to work, they have learned to support themselves and live with dignity," she says. "The depth and the meaning from all of these have been inspiring me to work as much as I can for people in need of help, doing things that I believe in and always keeping the faith that, maybe one day no one will feel scared any more when they meet with this special, respectable group of people."