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Features Promoting Inclusion of People with Hansen’s Disease
Hansen’s Disease in Japan: The Lingering Legacy of Discrimination

Twenty years have passed since the repeal of the law mandating isolation of Hansen’s Disease (leprosy) patients in Japan. The government has recognized the injustice of the isolation policy and has moved to compensate the victims, but many former patients and family members still sense discrimination and prejudice.

Broken Family Ties

“My life has been a struggle. I was a crybaby when I was little, but I became the strong person I am now by overcoming my sorrows and hardships one by one.” So declares 89-year-old Hirasawa Yasuji, a recovered Hansen’s disease (leprosy) patient residing at Tama Zenshōen in western Tokyo. “I’ve lived my life up to now with pride in having been born as a human being. Hansen’s disease patients and those who have recovered from the disease are striving twice as hard as other people every day.”

Hirasawa has lived at this sanatorium for people affected by leprosy since he was 14. He serves as a speaker at the neighboring National Hansen’s Disease Museum, delivering talks more than 100 times a year to visiting groups of elementary and junior high school students. He explains how his own life was buffeted by the former policy of isolating Hansen’s disease patients, and he talks about the hardships endured by the sanatorium inmates. But he also urges the visiting students to have dreams and hopes, telling them they absolutely must not treat their lives carelessly.

Hirasawa Yasuji, a recovered leprosy patient, speaks to a group of elementary school students at the National Hansen’s Disease Museum.

Though he was subjected to unwarranted discrimination and prejudice because he had Hansen’s disease, Hirasawa speaks energetically to the visiting students about human dignity and the joy of living. And as he does, the students gradually get caught up in his words.

“Thanks to international exchanges among people with disabilities, I now have friends in twenty-two countries. I’ve been to eleven foreign countries so far, and to just about every place in Japan.” At this point some adults in the audience may think Hirasawa has started to boast. But if so, they are quickly embarrassed at their own insensitivity as they listen to him continue: “But I still can’t visit my family home. And I continue to be told not to even visit my parents’ grave during the day.”

It is sad to think of the unfairness that people like Hirasawa suffered—not just being isolated from society but being cut off from their families. He declares: “Though I’ve been medically cured of Hansen’s disease, society still doesn’t treat me as cured. That’s the reality. Human beings harbor a demon of discrimination within themselves. I want you young people to drive these demons out—even just one of them.”

Incremental Progress in the Face of Deep-Seated Prejudice

Promin, a revolutionary new drug developed in the 1940s, made Hansen’s Disease curable. But the Japanese government continued its policy of forcibly isolating patients for many years thereafter. Even now, 20 years since the Leprosy Prevention Law was repealed in 1996, there is a lack of social understanding about this disease.

Bit by bit, however, progress is being made. Hirasawa says, “There are a lot of cases where elementary students who’ve listened to me have in later years talked their own grandparents out of their prejudiced ideas.” And the roads lined with cherry trees at Tama Zenshōen have become a popular destination, attracting people from the surrounding areas to view the blooming sakura every spring.

Residential area at Tama Zenshōen.

Row houses line a street in the residential area.

In 2015 director and screenwriter Kawase Naomi, winner of many international awards for her work, came out with a film version of the novel An, based on a novel of the same name. The story is set in a small shop selling dorayaki bean paste sweets, where a former leprosy patient who is seeking to rejoin society takes a job but encounters resistance from the local community. Parts of the film (also titled Sweet Red Bean Paste and Sweet Bean in English) were shot in Higashimurayama, the municipality where Tama Zenshōen is located, with cooperation from local residents.

Kuroo Kazuhisa, deputy director of the National Hansen’s Disease Museum explains that the understanding of area residents has progressed in small increments over a long period of time. He also notes that the attitudes of the former patients have shifted greatly. In the past their struggles were directed mainly at securing better conditions within the sanatoriums, but since the repeal of the Leprosy Prevention Law in 1996, they have sought and won reparations and an apology from the national government, along with the restoration of their honor. And unlike the earlier campaigns, which were commonly conducted just within the sanatoriums, their efforts have been carried out in liaison with civic movements, and their claims have come to be heard more broadly among the general public.

  • [2016.08.17]
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