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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

INTERVIEW: Don't Forget Us

Michihiro Ko wants all 13 of Japan's leprosy sanatoria preserved for posterity.

Michihiro Ko stands in front of the charnel house at Tama Zenshoen in Tokyo.
Michihiro Ko stands in front of the charnel house at Tama Zenshoen in Tokyo.
Michihiro Ko, the president of Zen Ryo Kyo*, the National Hansen's Disease Sanatoria Residents' Association, worries about the future of Japan's 13 national leprosy sanatoria, home to a dwindling population of some 2,400 residents with an average age of almost 81. For the better part of a century, people with leprosy were forcibly isolated in these facilities. However, under the 2009 Law on Promotion of Issues Related to Hansen's Disease, the question of what is to become of the sanatoria is to be addressed. But Ko, 76, who lives in Tama Zenshoen Sanatorium, is not convinced that the government is taking the matter seriously.

What do you want for the sanatoria?

I see them as having several uses. First, my wish is for each sanatoria, or at least part of it, to be preserved as a museum of human rights and place of reflection, serving as a reminder that the mistakes of the past should never be repeated ・just as the former Auschwitz concentration camp in Poland is a very important museum and learning center today.

"I believe that the government is simply waiting for us to die off."

Japan's past policy toward people with Hansen's disease was accepted completely by the public. No one questioned what the government said. Society didn't think about the consequences for people who were forcibly quarantined under this policy. Later, when a cure was discovered and those isolated in the sanatoria began to get better, there was no call for their release because the government made no attempt to inform the public. Nor was there an official effort at social reintegration, because the leprosy prevention law remained in effect.Over 25,000 people have died in the sanatoria. Their bones are interred at charnel houses there. I want a law that requires the government to maintain the charnel houses for all time. For its part, I believe the government is simply waiting for us to die off, when it can close down the sanatoria. But if the sanatoria are closed, then our sacrifices will be forgotten.

You also see the sanatoria as capable of meeting various social needs.

The country needs more daycare centers for children of working parents, for example, and the sanatoria could be used for this purpose. Also, in Japan's aging society, there are not enough facilities providing care for the elderly. It should be possible to adapt sanatoriums as places where old people can live out their final days. Sanatoria have built up knowledge and expertise in nursing and elderly care. They are very appropriate for this.

What changes have you seen since the 2009 law came into effect?

The health ministry hasn't begun anything new as a result of the law, which was passed in a very short time with the signatures of 930,000 petitioners. The public doesn't know this; Parliamentarians don't know this. Therefore, our job is to tell everyone ・Parliament, the public ・that the law we passed together is not functioning, but is just gathering dust.

You are very insistent on this, aren't you?

It is vital that the public is made aware of the situation. Everything starts from that point. It was the public that in the past allowed the government to isolate us. Thereafter society completely forgot about us and took no interest in the matter. It was because no-one raised their voices that we remained in isolation for so long.

Footnote

Zen Ryo Kyo dates back to 1951, when its forerunner, Zen Kan Kyo, an association of sanatoria patients, was established as the earliest example of a national-level association of persons with leprosy. In 1996, the year Japan's Leprosy Prevention Law was abolished, it changed its name to Zen Ryo Kyo.