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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

SPEECH: The Meaning of Our Museum

Veteran activist tells workshop of his vision for Japan's national leprosy museum.

On October 25, Yasuji Hirasawa addressed participants of an international workshop on the preservation of leprosy history and heritage. This is an edited and abridged version of his remarks.

Welcome to the National Hansen's Disease Museum. I am heartened by this international gathering to discuss the preservation of leprosy history and heritage.

I would like to address three points: why we established this museum, what its mission is, and why it looks to the future rather than dwells on the past.

Down the years, many remarkable people have lived in Tama Zenshoen, the sanatorium next door to this museum. Hidden from society, they retained an interest in the outside world and were very productive. The hub of this cultural activity was the sanatorium library.

But in the second half of the 20th century, as new cases of leprosy in Japan declined and as the sanatorium population decreased, fewer people were using the library. Those of us on the residents' committee were faced with the challenge of keeping it going.

We decided to turn it into a specialist library on leprosy that would serve as a center to explain the history of the disease to people in the 21st century. This was around 1974-75. We collected documents and other objects - such as everyday items of residents who had passed away - and put them on display.

As time passed, the question arose: What would happen to the library after we died? Around 1990, we arranged a meeting with Dr. Fujio Otani, the chairman of the Tofu Kyokai, an association to help sanatoria residents. We asked him what would have been the point of our lives if this history were to disappear once we were gone. We said that we wanted to establish a museum and were prepared to do so ourselves.

This was a minority opinion among sanatorium residents. The majority gave the idea a chilly reception. They said that if we started telling people about the history of leprosy, we would only stir up the prejudice that exists in society. Our response was to explain why we felt it was important to have a museum and how we hoped it would benefit society.

From the 1990s, we started collecting materials, raising funds and putting up displays. We did everything ourselves. We didn't receive any support from the government or the medical community. We made this museum with our own hands.

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The National Hansen's Disease Museum: a place to think about what it means to live

INSPIRATIONAL VOICES

The museum was influenced by the ideas of three people I have known. The first was a tuberculosis patient who, in the 1950s, took the Japanese government to court over his constitutional right to life. He won in the district court but the verdict was overturned in the high court and the ruling was upheld in the Supreme Court. Coughing up blood, he told me of his regret to be dying on the losing side. "This movement isn't just about us," he said. "It's for the sake of society as a whole."

The second person was Masao Ogura, the founder of Yamato Transport Co., a parcel delivery company. Through the foundation he started, he was very active in supporting persons with disabilities. He told me: "You are sure to succeed if you can make everyone happy."

The third is a person I have mentioned already, Dr. Fujio Otani. His dying wish was to realize a society in which all people can live together.

As human beings we need to build mutual trust. That is what this museum is all about.

The museum opened in 1993 as the HIH Prince Takamatsu Memorial Hansen's Disease Museum. It helped to pave the way for the abolition of the Leprosy Prevention Law in 1996. Following a landmark legal judgment in 2001, the museum was nationalized. Construction of a new building began in 2005 and it reopened in April 2007 as the National Hansen's Disease Museum.

Today the museum receives around 30,000 visitors a year. It's a place where the likes of educators, bureaucrats and public welfare providers can reflect on the meaning of human existence and what it is to live.

Yesterday, 100 schoolchildren visited. When children come, they listen attentively, write essays and make newspapers. Then they go home and tell their parents, relatives and others about the disease. But 100 times more effective than what I tell them in terms of helping to bring an end to stigma and prejudice is when they shake this disease-scarred hand of mine.

LIFELONG ACTIVIST

I have been a patient activist for more than 60 years. As a person affected by leprosy I have worked with groups of people with tuberculosis, with mental and physical disabilities and with incurable diseases all over the country.

I am fighting for a society in which people can live as human beings, whatever barriers they have to face. I take the position that a society in which we can be happy is a society in which healthy people can be happy too.

In the past, we were discriminated against by people in the community. Places I visited were disinfected. I wasn't allowed in taxis. People refused to sell things to me. But is there anything to be gained by bearing grudges and meeting animosity with animosity? As human beings we need to build mutual trust. That is what this museum is all about.

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PROFILE: Yasuji Hirasawa

Diagnosed with leprosy at 14, Yasuji Hirasawa has lived in Tama Zenshoen sanatorium for 71 years. In 2005 he was awarded the Yoshikawa Eiji Cultural Prize for his efforts to restore the human rights of people affected by leprosy and his contribution to educating children about human rights.