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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

Our Story, Our Legacy

Why a leprosy museum is so important to those whose history it relates.

Japan’s Leprosy Prevention Law, which lasted 89 years, confined people affected by the disease to sanatoria. Over time, as the number of new cases started to decrease, we residents began thinking about the future of the sanatoria as early as the 1970s.

Among the many suggestions was to preserve our history. We wanted future generations to know we lived with dignity and pride, despite all forms of discrimination. We wanted our legacy to give them hope.

We started with a library on Hansen’s disease. In our desire to expand the library into a museum, we established a committee in 1991. We started from scratch, doing everything from planning to fund-raising. We went out on the streets, asking passers-by for support for the museum’s construction.

Along with a building, we also needed to give thought to the displays and the management of the museum. Having no budget, we relied on volunteers.

We wanted future generations to know we lived with dignity and pride, despite discrimination.

We did everything. We drove to sanatoria, looked through documents and materials, brought them back, displayed them, gave tours of the museum, gave talks, and on top of all that, we raised funds so that the museum could operate.

Life lessons: a visit to the Hansen’s disease museum

The museum was officially opened on 25 June, 1993. It was our wish that people and the media could learn about the history of Hansen’s disease. At the same time, we hoped that the policy of absolute isolation — the Leprosy Prevention Law — would be abolished.

This law was finally abolished in 1996. One of the people behind this historic victory was Dr. Fujio Ohtani, a medical doctor and health ministry official. Dr. Ohtani was a man of vision and integrity, and the abolition of the law would not have been possible without him. He believed that our voices — the voices of people affected — mattered and should be heard by society and the medical profession.

I would like to emphasize that it was not the government or medical doctors that instigated this: we did — with Dr. Ohtani’s support. We took the initiative; we fought; and we won.

Five years later, we decided to sue the government over the segregation policy. Then-Prime Minister Junichiro Koizumi formally apologized to us after the court ruled in our favor. Following the court ruling, the museum was turned into a national museum with a steering committee and professional curators.

I was married in 1950, and like many others I was sterilized, just like a dog or a cat. I have been teaching about peace to over 5,000 children a year, but none of them are my own. Each one of the over 7 billion people on Earth, whether affected by Hansen’s disease, AIDS, mental illness, or other disabilities, regardless of gender or age, are a part of this Earth. Each has a role and duty.

Many children suffer from bullying and many commit suicide in Japan, and the same goes for grown-ups too. It is my sincere wish that people facing such problems will visit the museum and learn how we have struggled just in order to live as human beings. We want our history to provide a life lesson — to lend strength, dreams and hope to many people, today and tomorrow. The museum is a place to realize our earnest wish.

There still remains injustice in the world. Economic disparity, gender inequality and racial discrimination are just a few of the problems. In order to attain true peace and prosperity, we need to be forgiving and appreciative of what we possess. I hope our museum is a place where people learn about life and compassion, and thus contribute to world peace.

I started giving talks to schoolchildren more than two decades ago. Those first children, who are now working, who are now parents, still come back to see me.

I am 89 years young, and I am a happy young man. When I leave this world, I am sure I will pass away content and happy. My legs, arms and throat are all paralyzed, but though I have a wide range of physical disabilities, I still cherish this body as my life’s treasure. Children love me, and I love them. I proudly announce I am the happiest person on Earth.


AUTHOR: Yasuji Hirasawa

Yasuji Hirasawa is a member of the steering committee of Japan’s National Hansen’s Disease Museum. Diagnosed with leprosy at 14, he has lived in National Sanatorium Tama Zenshoen for 75 years. This is an edited version of his presentation to delegates attending the International Symposium on Leprosy/Hansen’s Disease History who visited the museum on January 27.