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Here We Are Together

Page history last edited by happylosheng@gmail.com 12 years, 9 months ago

Here We Are Together

 

Ayako Yaegashi

General Secretary, IDEA Japan

 

1996年是我第一次接觸到漢生病,因為協助Morimoto先生和他太太出版一本書籍,描寫他們如何對抗疾病、和漢生病共處,也才驚訝的發現有一間漢生療養所就在我家附近,而且有500名患者住著,我很愧疚竟然完全沒有想過以前住在這裡面的人的生活和所遭遇的事情。

 

 

 

當我初次造訪療養所時,所有病人都立刻轉頭就走、不想讓我看到,我問Morimoto先生原因。

 

他說:「Ayako,那是因為妳不會歧視我們,但這裡的病人仍非常害怕世人歧視的眼光。」

 

 

 

1997年我很榮幸參加IDEAWHO在聯合國總部紐約辦的活動Quest for Dignity尋求尊嚴」,我一直被問,我到那裏去做什麼,我也問我自己,我能做什麼,我能問一般人所不知道的漢生病人的生活,我特別想問女性患者,她們怎麼面對疾病,因為目前所可以得知的都是男性患者的資料。

 

 

 

我開始進行口述歷史調查,我的先生,一位專業的攝影師則進行攝影,我也開始拜訪全日本的療養所,此時,對日本政府過去錯誤政策的訴訟也正在進行,一邊訪談,我一邊開始在雜誌發表文章。

 

 

 

我也造訪韓國小鹿島和台灣樂生院,了解癩隔離法」對那裡的人造成的苦難,他們怎麼生活,我也漸漸了解亞洲漢生病的歷史。

 

 

 

因為有幾次參與IDEA會議的機會,也了解IDEA組織在各國的運作,這成為我生活一大喜悅來源,看到IDEA工作者、漢生病人為爭取尊嚴所作的努力,也激勵了我。

 

 

 

近日,在日本社會關注的焦點轉向療養所如何繼續維持以及如何回復因隔離所斷裂的親屬網絡,要作到這些,社會大眾必須放下歧視、患者必須放下那曾經遭受的歧視,一起敞開心房,一起去思考,我們如何在社會一起生活,這也是IDEA Japan希望做到的。

 

 

 

My initial encounter with problems with Hansen’s disease was in 1996. I helped Mr and Mrs Morimoto publish a book on how they struggled with and lived with the disease. I had thought the disease as a disease of the past, and it was a huge astonishment to me to learn that there was a national Hansen ’s disease sanatorium near my house and approximately 500 people lived there. I could not feel but ashamed that I had not even given a thought to the people who have experienced the disease.

 

 

 

 

When I visited the sanatorium all the people turned away from me, and ran away from me. I asked Mr Morimoto for the reason.

 

 

 

“Ayako, you may have never discriminated us who are affected by the disease personally, but we are afraid of people outside the sanatorium. We have been and are discriminated, and people outside the sanatorium have been and are on the other side of the discrimination”.

 

 

 

Why I did not know about the history of Hansen’s disease, whether I cannot escape from being on the side to discriminate. These two points are the starting points for my endeavour as a volunteer to work with people affected by the disease.

 

 

 

In 1997, I had the privilege to take part in the “Quest for Dignity” organised by IDEA and WHO at United Nations Head Quarters in New York. Having being asked what I was doing there many times, I thought what I could do and what I should do. What can I do? I can ask people about their life, the lives general public know hardly anything about. I wanted to talk especially with women. Of what little was known all were about men. Nothing about how women struggled and how they lived were known.

 

 

 

I started conducting oral history of people. My husband who is a professional photographer takes photos, and I interview people, and I write about the people and interviews. I also started visiting sanatoria throughout the country when the lawsuit against the government for its past wrong-doing was filed, talking to and with people. Many articles have been published in magazines.

 

 

 

I have visited Sorokdo in Korea, Lo-Sheng in Taiwan and talked with the people who lived there, learned about their lives, and learned and felt the damages and wounds that the Leprosy Prevention Law of Japan have left to them. I have come to understand the history of the disease in Asia.

 

 

 

Having attended international meetings of IDEA at several occasions, having had the opportunities to learn IDEA members in different countries has been a great joy in my life. I have been enormously encouraged and uplifted by how all of you have lived your life with dignity despite hardships and sufferings.

 

 

 

Currently, the most pressing topics in Japan are how sanatoria should survive and how to bring back family ties. Neither of these will be solved unless those of us with the disease who have been discriminated and those of us who have discriminated would open their hearts up, think together, and aim for a society where all of us can live together. The society where people can live together is what IDEA Japan’s dream is.

 

 

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