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Former leprosy patients reveal the discrimination they suffered

Former leprosy patient Haruhei Ishiyama is seen at a meeting of the "Aoba no kai" organization in Nakahara Ward, Kawasaki, on Feb. 26, 2016. (Mainichi)

April 1 marks 20 years since the abolishment of a leprosy prevention law through which the Japanese government carried out forced quarantining of Hansen's Disease patients in sanatoriums. While the government has admitted that this policy was a mistake, many former leprosy patients feel that even now there is prejudice and discrimination against them. The Mainichi looks at how former patients' lives were disrupted by the discrimination they faced, and how they are interacting with society now to share their stories.

One 78-year-old man in Saitama Prefecture was released from his leprosy sanatorium 43 years ago. His wife has passed away, and his son now lives on his own, leaving only the man, who has no interaction with his neighbors, living in a large apartment with a bare minimum of furniture.

"I'm on the path to a solitary death," he said, as he gazed off at far away mountains.

The man was born in Okinawa Prefecture and when he was young his family moved to Nagasaki Prefecture. He was then diagnosed with leprosy when he was a second-year high school student and forced to enter National Sanatorium Kikuchi Keifuen in Kumamoto Prefecture. His family left him there and returned to Okinawa like they were running away from him.

The man's symptoms were light, and they left hardly any aftereffects. After moving between a number of facilities, he was finally released at age 35 from the national sanatorium Tama Zenshoen in the suburb of Tokyo. Sometime later he married a woman who he had met while a patient, who had also been released from leprosy treatment. They had a son together. A peer of theirs who, like many leprosy patients in sanatoriums, was surgically prevented from having a child as a condition for getting married there, assisted with the boy's schooling expenses.

The nation's policy of forced quarantine of leprosy patients continued. In order to hide his former time as a leprosy patient, the man avoided talking about his past at the factory where he found work. He only said hello in the morning and farewell at the end of the day, and though he worked until he was 63, he never made a friend.

The man's wife, who was put into a sanatorium at age 6, was ostracized by her family until she passed away at age 39, still regretting being unable to attend her father's funeral. At the end of last year, after visiting his wife's grave, the man went to see her family. When he showed a picture of he and his late wife's son to his brother-in-law, the brother-in-law doubted whether it was really his sister's child. The man wanted to talk about how he and his wife had met, but the brother-in-law told him flatly, "We don't talk about leprosy in this house."

Recently, the man has begun to talk about his experiences in public, though he does so under a pseudonym. Once, after finishing a speech at a junior high school, a student came running up to him and asked, "Will prejudice and discrimination ever go away?"

"It probably won't," he answered the student honestly. Like his late wife, he has lost contact with his family. "Well, then, what you're doing is a waste of time," the student replied.

The man, while acknowledging that maybe it was a waste of time, said to the student, "The discrimination and prejudice of the past was terrible, but thanks to education people are more understanding now. In 50 years, it should be even better. I come to these talks because I am counting on you all."

Due to their experiences with discrimination, many former leprosy patients continue to hide their condition even now. Haruhei Ishiyama, 80, chairman of the "Aoba no kai" organization of former leprosy patients in the Tokyo metropolitan area, is one of the few former leprosy patients to speak out for their cause under his real name.

Born in Shizuoka Prefecture, Ishiyama was diagnosed with leprosy when he was a sixth-grader. He was made to leave his school, and neighbors called him disgusting, told him not to walk out in the open and threw rocks at him. He decided he would live, if just to get back at them. After 15 years at a privately-run sanatorium, he married a woman who had worked there and they had three children. He now holds talks around the nation and always shows up at his elementary school class reunions.

Former leprosy patients are growing old, and while some of Ishiyama's peers say that there is no need to tell the world about the discrimination they once faced, Ishiyama plans to continue doing so until he dies, because discrimination, whether it be based on illnesses, circumstances of birth, or race, can be found anywhere.

(This is part 1 of a series)

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