Monday, 2 July 2018

A Japanese Leprosy Patient Survivor’s tale

Japan put thousands of leprosy patients in compulsory detention in sanatoria because of their disease. One of these survivors, Edo told me his story in 2016 and how he became a leprosy patient champion. I visited the sanatoria with a human rights activist, Kay Yamaguchi, a 70 year old social scientist who has campaigned for human rights for Japanese leprosy patients.  She is petite woman who speaks fluent English and was an impassioned guide to the sanatorium and museum. She knew the patients in the sanatorium well from her visits over the years. The Japanese government put newly diagnosed leprosy patients in sanatoria from 1905 onwards.  There were searches to find patients with leprosy who were then put in the sanatoria compulsorily. The numbers of patients going into the sanatoria peaked in the 1930’s but continued until the 1970’s. They were not allowed to leave despite having an infectious disease that became treatable in 1948 with the antibiotic Dapsone.

Edo is 85 and has been badly affected by the disease and sits in a wheelchair. His nose had collapsed and his eyes were rheumy. He had lost several fingers and he wears heavy protective boots on his feet. He lived in a village and had developed single red patch of leprosy on his face when he was 20 in 1948.  Leprosy was diagnosed because he had no feeling in the skin patch. He was then sent to National Sanatorium Tama Zensho-en in Tokyo. He joined 900 other patients who lived in bungalows. He was treated with the new antibiotic drug Dapsone in 1950, although this cured the infection he still developed damage to his nerves. He later developed facial changes and severe deformities after treatment because he lost sensation in his hands and feet. He did not feel injuries and burnt himself on bowls. He had to weave bamboo and so cut his hands and he was unaware of the injuries.  These then developed into bone infections and his fingers became short and deformed.  He rebelled against the strict regime which included wearing uniforms. Disobedient patients were put in a prison inside the sanatorium; the incarceration was determined by the sanatorium head.  He still looked angry when telling me that when he married in 1954 he was sterilised so that he and his wife could not have children. This was even though leprosy is an infectious, not a hereditary disease.  In the 1960’s he became a patient leader and challenged the medical and government authorities on their treatment of leprosy patients.   His eyes lit up as he described meeting other human rights activists in Switzerland and seeing the mountains there. In the 1970’s the Japanese government stopped detaining leprosy patients.

The Japanese government acknowledged in 1998 that the leprosy patients should not have been in the leprosaria, they apologised for their actions and agreed that patients would have life long provision there. This was important because some had left the leprosaria and were now finding it difficult to manage when they were elderly and infirm.  Another patient Zen had returned to the leprosarium a few years ago. He had married and worked outside the sanatorium but when his wife died he was not able to look after himself. Because of the prohibitions on having children they had no children to care for them.  He now lived in two rooms, in the living area there were tatami floor mats and low sitting stools. On the mantelpiece were clay figures representing the harmonica band he used to play in.  He told us how the arts helped people survive their loss of liberty.  People produced beautiful ceramics, others wrote poetry. There was a sanatorium magazine which inmates contributed to. I met a third patient Sumi who was bedbound and frail in a geriatric ward where he was being well cared for by the nurses.

The sanatorium comprised a large pleasant wooded area. Most patients lived in bungalows with verandahs and a small garden.  There is a small Shinto shrine where the ashes of past patients are kept.  Here we sat and reflected on the lives of the former inmates.

The government established a modern museum in the sanatorium to record the experiences of the patients. Inside are the 10 different sections chronicling different aspects of life in the leprosaria. This includes photos of the things that Edo had described. The themes of the survival were explored. The museum was beautifully put together with nice photos and material objects but very little translation into English and the curator does not speak English. Kay was an enthusiastic translator. It was a fascinating exploration of the loss of human rights and the fight to document their struggle.  I felt that I was touching history by seeing the leprosarium and meeting the last patients, Edo and Zen. There are still 1239 patients in leprosaria across Japan. There are other leprosaria in Brazil, America and India.

The challenge of how to care for these patients and how to preserve their history is very live and discussed from the local to the global level. In the UK a novel about a similar colony in Greece in the 1940’s became a best seller in 2005 (The Island by Victoria Hislop). This book has helped to destigmatise leprosy and raise awareness of the human rights of the inmates. We need more books and activities like this to keep the issue alive.

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