The Nippon Foundation, in cooperation with the Sasakawa Memorial Health Foundation (SMHF), has played an active role in the global campaign to eliminate leprosy and the problems associated with the disease. One of the programs that it supports is a work camp for student volunteers in a leprosy village organized by Joy in Action (JIA), a nongovernmental organization in China.
Kazuko Yamaguchi, director of the SMHF, elaborates on the meaning the work camps have for both villagers and students:
“For many students, the camp is a chance to reflect anew on the importance of the bonds between people. Many leave with a sense that they have undergone a change, and that their bonds with other people have changed as well. In this respect, the communities where people with leprosy were forced to live in seclusion today serve as places where the students can take a fresh look at their own lives and find some inner peace. A new form of communication seems to be in the making between people with leprosy and the rest of us.”
At present, Japanese students participate in work camps at 51 leprosy villages in Guangdong, Guangxi, Hunan, Hubei, and Hainan provinces. Over a period of one to three weeks, the Japanese and Chinese student volunteers, who hail from 33 universities, share meals and live together while working on construction projects and visiting the homes of villagers.
Support for the work camps is provided by the nongovernmental organization JIA, which shares the pronunciation with the Chinese word meaning ”family.” The organization was founded in 2004 to collect information, procure funds, and train facilitators. The director of JIA is Ryōtarō Harada, a Japanese national who migrated to China; he explains the aim of the work camps:
“The volunteers have quite different backgrounds because they come from both Japan and China. Thrown into the same place for a week or more, they must remove their veil, be honest about their feelings, reach out to people with different values, and learn how to understand and accept them. But our outer, protective shells don’t crack so easily. These students come into contact with those who, because of leprosy, lost their place in the community and whatever assets they had, and were forced into seclusion—leaving behind the comfort of family and friends they’d known for many years; but despite all this, they are seeking to make a living and make the most of their lives. It’s a powerful experience for the volunteers. They learn things about themselves and the importance of working with others. The villagers, for their part, have been starved for human contact and have a great time with the students. What makes these camps so great is that both sides benefit. ‘Work’ is not just a matter of getting a job done but of reaching out to other people.”
Leprosy Policies in China
China’s first measures to deal with leprosy were implemented at the beginning of the 1950s, shortly after the Communist Party came to power in 1949 and established the People’s Republic of China. About 800 isolation facilities for leprosy patients were built around the country, and some 500,000 patients were seen at these facilities until 1998, according to patient records.
The government originally intended to use domestically produced dapsone (diamino diphenyl sulphore) for treatment and prevention, but the healthcare system was still in its infancy, so the success was limited. Real progress began to be made in the 1980s. The World Health Organization in 1981 designated multidrug therapy (MDT) as the standard treatment, and soon after it was introduced in China. The Chinese health authorities began collaborating with overseas research organizations and NGOs, and the Sasakawa Memorial Health Foundation provided assistance on many occasions in response to requests from the Chinese public health authorities.
The SMHF made a major contribution to the implementation of leprosy health policies in China. In 1983, it donated 1.2 million 50-milligram capsules of the anti-leprosy drug clofazimine, and the following year it began providing all the medication needed to treat the disease in the six provinces with the highest incidence rate (Shangdong, Jiangsu, Zhejiang, Anhui, Hubei, and Jiansi) as well as vehicles and supplies needed for field work.
In October 1998 the Chinese government made an official announcement that leprosy had been eliminated* at the fifteenth World Leprosy Conference, held in Beijing.
* According to the WHO’s standard, leprosy can be described as “eliminated” in a country when its average incidence rate for the disease nationwide is no higher than one case per 100,000 people.
Harada explains that though leprosy has been brought under control, discrimination remains an issue:
“Today, people who are infected with leprosy can get treated on an outpatient basis, rather than being forced into isolation. The average age of those living in China’s roughly 600 leprosy villages is over 70 years old—and those in their 60s are regarded as young. All of the residents of those villages have been there for decades, cut off from their families and relatives, and suffering severe disabilities resulting from the disease. Even though the war on leprosy has been won, discriminatory attitudes survive, owing to a lack of information and education. This situation has made social reintegration for the villagers a challenging task.”
In 2008, just before the Beijing Olympics, people affected by leprosy were included on a list of foreigners banned from entering the country during that international sporting event. The announcement was made ahead of the Olympic Games by the Chinese Olympics Committee. The announcement of their exclusion was a sign that the human rights of leprosy sufferers had yet to be safeguarded. The chairman of the Nippon Foundation, Yohei Sasakawa, in his capacity as WHO Goodwill Ambassador and Japanese Government Goodwill Ambassador for the Human Rights of People Affected by Leprosy, immediately sent a letter to Chinese Premier Hu Jintao and International Olympic Committee President Jack Rogge expressing his regret and asking that the ban be lifted—and China subsequently withdrew the exclusion order.
The work camps play an important role in the fight against discrimination, as Harada explains:
“When children living in nearby villages, who normally stay away from the work camps, see the students enjoying themselves, they go by to get a peek and end up joining in on the fun. The next day, their parents come with them. When the parents see the students and the villagers having a good time together, they realize for the first time that people affected by leprosy need not be feared and that they won’t catch the disease. They also find themselves drawn to the villagers, for their goodness and upbeat outlook. This is another thing the camps achieve. We’re now looking into the possibility of holding simultaneous work camps in a leprosy village and a nearby school, with the explicit goal of facilitating such interaction.”
The residents of the leprosy villages are aging quickly, and their numbers are dwindling. This has had a huge impact on the work camp operations.
Harada also touches on the future direction of the organization’s work:
“Most of the construction and repair work has been done, so the most important task now is to record the experiences of the villagers. The students can learn a lot of things that they can’t learn in a classroom by listening to the stories of people who have suffered and survived so much discrimination.
“Our goal is not to create an account of the tragedies of the disease and the history of discrimination. Rather, as I have said before, the campers have much to gain from the villagers because they are ’living assets‘ with the power to deepen the bonds between people. The poet Mitsuo Ōe (1906-1991), who sought to help end discrimination through his poetry, was said to have spoken of ‘an Asia united through leprosy.‘ Thanks to the efforts of other volunteers and organizations working in the field, work camps have been organized in a number of other Asian countries, including India, Indonesia, and Vietnam. A movement is taking shape, and we will set our sights on promoting the spread of work camps to the rest of Asia and the whole world.”
Photographs by Keizō Ōkubo