Oral History Excerpts

Tokio Nishimura
Japan

Introduction

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Recovering Voices From
the Distant Past

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Stigma, Identity and Human Rights
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Books Written by People Who
Have Had Leprosy

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Mr. Nishimura with a young friend in China, August 2003.
Photo Courtesy Mr. Nishimura

It is more important for me to understand other people than for them to understand me. Because by understanding them, I can learn to understand myself. That’s why from now on I want to know about the situation in the whole world, not just Japan. Then I hope I can find myself through the information received from other countries. I want to know about other places. I want to be a better person. People have their own style, so they have to find their own way to fight for themselves.

We should pay attention to people affected by Hansen’s Disease in Iraq, Afghanistan. If you don’t pay attention to a tiny drop in the ocean, the world is just for very strong people. The first thing is to get courage – to have the courage to make society have the ability to receive the courage of the people. We have to realize that it is not only society that is the problem. We are part of society and we also have responsibility for stigma and discrimination.

The most important thing for us who live in sanatoria today is to eliminate barriers, stigma, and prejudice within our own selves. We cannot just talk about “people living in the sanatoria” as one group. Each of us is different. We have different backgrounds and our situations are different. For instance, there are many who cannot even go back to their hometown after all these years. There are many who cannot go inside their own home in their hometown. There are many who cannot go back home even after they are cremated. I would like the wider society to think about this. Why has this happened? Why is it like this even today? I would like not only those who have experienced the disease to think about it, but people in society to think about this.

About 20 years ago I had to move out of my family because my brother wanted to get married and my brother was afraid others would be worried about the disease. So they hid everything about me and I had to move out so my brother could get married. Recently, a reporter told my story, so my family understands me now. My family visits me at Suruga. My brother visits me now. On April 4th, I’m going to join a wedding in my family. I will give a speech. If your family cannot understand you, no one else can really understand you. Most important is your family.

The most painful thing for me was that we couldn’t have children. This was the crime of the government. That’s why we wanted to fight and regain our human rights in court. When the Leprosy Prevention Law was abolished in 1996, nothing changed. No change in the community’s attitude, no change in anything. The change was brought at the time of the Kumamoto District court case. The government apologized officially for their mistake, and it was only then when things started to move forward. Some of us started to think about leaving the sanatoria, and some have done that. Through this court case, we started to become different. We started to feel different. Each one of us started to recover our humanity. We started to change. People started to leave the sanatorium, people started to resume communication with their families, people started to go freely to the local health facilities. None of this was seen before the Kumamoto District lawsuit.

Sadness can only be overcome by yourself. Nobody can help you overcome your sadness. It all depends on your effort. I have made a great effort to overcome the sadness of not having been able to have any children. Now I am over the sadness. Whenever children of this community come to visit us, whenever we see children in leprosy villages in China, all I feel is happiness and joy. I am happy that I have overcome this sadness in my heart. I feel that unless you overcome this sadness of not being allowed to have children, you can never forgive the government.

Do you know what I have been thinking recently? There was this huge news that hit Japan recently. Five people who were abducted by North Korea and had to spend something like 25 years in a country where they knew no language or culture, returned to Japan. You can just imagine how hard that situation must have been. But, you know, everyone in this country welcomed them back. Every single one of us in this country did. But think about us. We were forced into a small institution like this by our own government. And we were locked up in this small sanatorium for 40, 50 years. Many of us cannot go back to or even visit our hometowns even to this day. This shows how severe the discrimination that we still face today is, and this was the result of a wrong national policy. But we cannot simply sit and wait for the government to correct the past wrongdoings. We also have to do something from our side. We have to stand up, and we have to change things from our side as well. This includes changing ourselves, getting rid of our inner fear and the stigma that is deep inside us.

I am now 60. In the next 10 years what should I do? When I went to China, what I learned from the Chinese is how warm their hearts are. The Japanese who have had Hansen’s Disease, our living is OK, but inside we still feel lonely sometimes. Even if the Japanese have a very good quality of life, their insides are still very lonely. For the Chinese people, even if they have quite a hard life, they have warm hearts. People are so nice. We are learning from the Chinese. We provided some material things but we got more from the Chinese – we learned how to be stronger.

Children of Japan, children of other countries, wherever they are from, and wherever they live – children are treasures and gifts. If children change, their parents may change, then their family will change and eventually society will change.

My days are numbered. I don’t have too many days left. Each day is precious. Each day is special. I am cherishing every single day of my remaining time. I will do whatever I can do while I am still here, as long as my physical condition allows me. I now feel all the people around me who are encouraging and supporting me. So many people are giving me the power and energy to go on.

I just wish I had more time. I just so wish I had more time.


-- Excerpts from two interviews with Mr. Tokio Nishimura by Anwei Skinsnes Law, one in Guilin, China (March, 2003) and the other at his home in Suruga, Japan (May, 2004). Translation by Nao Hoshino, Hiroe Soyagimi and Vivian Pang. Copyright 2005 Tokio Nishimura and Anwei S. Law.

[Note: Between the times of the two interviews, Mr. Nishimura learned that he had lung cancer. He passed away on October 2, 2004. His was one of the biggest funerals ever held in Suruga Sanatorium. There were so many people who wanted to attend that some had to wait outside the chapel. His brother was there. Mr. Nishimura’s wife, Saeko, died eight months later. Mr. Nishimura visited China twice. After his visit to Shan Shi Ping Village, Yunnan, in August, 2003, the Nishimuras offered to complete the villagers’ long time wish to have electricity.]

Saeko Nishimura
The Nishimuras’ wedding photo
Tokio Nishimura
Color Photos by Henry Law