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‘Like entering a prison’: Japan’s leprosy sufferers sue government for decades of pain

Published April 14, 2016 in Uncategorized

A class action has lifted the lid on years of mistreatment which saw polluted victims rounded up and condemned to a life of isolation and neglect

Three years after the end of the second world war, Shinji Nakao stepped off a boat on to Nagashima island, convinced that his life was about to take a turn for the better.

The 14-year-old had been diagnosed with leprosy, then a widely misunderstood disease that struck fear into its victims and condemned them to decades of appalling treatment at the hands of the Japanese state.

Shinji Nakao, a former Hansens disease patient who was taken to island in 1948. He was not granted freedom to leave until the 1990s, by which time his wife, mother and brother had died, and still lives on the island. Photograph: Justin McCurry for the Guardian

I thought I was going to get help and be able to lead a normal life, Nakao, now 81, told the Guardian. It felt like I was going on a little adventure.

But his optimism vanished as soon as he arrived at Aiseien, a sanatorium for hundreds of leprosy patients looking out over the Seto inland sea that separates the island from mainland Japan.

Nakao thereafter referred to as patient No. 4973 and other new arrivals were taken into quarantine, stripped of their clothes and valuables and photographed, before being made to lower themselves into a bath of hot water and cresol disinfectant. They spent a week to 10 days being observed in hospital wards, segregated by sex, age and the severity of their symptoms.

It was like entering a prison, said Nakao, who shared a dormitory with 70 other children. We were referred to by our numbers, and of course we couldnt leave. I realised as soon as I set foot on Nagashima my freedom had vanished.

But Nakao was not the only member of his family to suffer as a result of leprosy, now commonly referred to as Hansens disease after Gerhard Armauer Hansen, the Norwegian doctor who identified the bacterium that causes leprosy in 1873.

Soon after he was taken to Aiseien, health officials disinfected the home in Nara prefecture he had shared with his mother and elder brother. Their neighbours, fearing that Nakaos family could also be infected, kept their distance.

This week, 20 years after Japan ended the compulsory segregation of people living with leprosy, the families of former patients launched a class action seeking compensation for decades of discrimination simply for being related to people with leprosy.

New arrivals to Aiseien were forced to bathe in hot water and disinfectant. Photograph: Justin McCurry for the Guardian

More than 500 people, including siblings, spouses, children and grandchildren, are seeking 5 million yen each (32,500) and a public apology from the central government, claiming that the stigma attached to the disease had harmed their employment, housing, education and marriage prospects.

They include Mitsuko Okudaira, who was brought up by her grandmother after her parents were taken to a sanatorium in Okinawa. I hope the central government will acknowledge the present situation, in which family members are still discriminated against and cannot talk about what they have been through, and do something to resolve the problem, she said, according to the Asahi Shimbun newspaper.

Under the 1953 leprosy prevention law, Japan rounded up thousands of patients and forced them to live in sanatoriums located in mountains or on remote islands, although the practice had been commonplace since the turn of the century.

In prewar Japan, sufferers were turned over to the secret police by medical authorities, while patients and other disabled people were considered polluted, and stains on the flag of the Rising Sun.

The segregation law, which was not repealed until 1996, forced patients to undergo abortions and sterilisation. They were made to perform backbreaking work for poverty pay, and subjected to imprisonment without trial for assaulting staff or attempting to escape.

In 2001 a court ruled that the policy of segregating Hansens disease patients was unconstitutional and should have been discontinued after effective multidrug therapies were made widely available by the end of the 1950s.

Aiseiens charnel house, which contains the unclaimed ashes of 3,600 people. The island is still home to 204 people. Their average age is 85, and most have been on the island for around six decades. Photograph: Justin McCurry for the Guardian

In a surprise move, the then prime minister, Junichiro Koizumi, offered a formal apology, and promised not to contend compensation claims former patients had brought against the state.

The end of forced quarantine came too late for Nakao, even though he was declared free of Hansens disease in 1970. His wife, Yuriko a fellow Aiseien resident and his mother and brother had all died in the 1990s, leaving him with no family connections.

If it had happened 30 or 40 years earlier it would have given people like me a chance to reintegrate into society, said Nakao, who suffered lasting damage to his eyesight and the peripheral nerves in his hands and legs.

But even after youre cured, the discrimination continues. Thats because the symptoms are still there in the most obvious parts of your body on your face and hands.

Even the healthy relatives of people with Hansens disease had to leave their homes. After I arrived here I heard that my old house had turned white after being disinfected. My mother and brother carried on living there, but life was awful for them. After all, I was the one who was ill, not them.

Today, almost 40% of the 1,597 people living in state sanatoriums still use aliases to prevent their families from being discriminated against, according to a survey by the Asahi Shimbun.

Ignorance about Hansens disease meant that it wasnt just the patients who suffered, but their families too, said Noriko Mori, an Aiseien official. Even now, many of the people here dont know if their brothers and sisters on the outside are still alive. They have no one to come and visit them.

Aiseiens ossuary contains the remains of 3,600 people who died at the facility since it opened in 1930. Their families didnt come to collect their ashes, Mori said. Even in death, they werent able to finally go home.

Nakao is one of 204 people still living on Nagashima. Their average age is 85, and most have been on the island for around six decades.

The room where newly arrived patients at Aiseien stayed. Photograph: Justin McCurry for the Guardian

At its peak in 1943, Aiseien was home to more than 2,000 men, women and children. There were schools and leisure activities, but in every other respect, the sanatorium was little more then an open prison from which most would never escape.

After leaving school, Nakao worked as a farmer, plumber and rubbish collector, and eventually became head of the residents association at Aiseien, one of 13 state sanatoriums that are now home to 1,500 people, all of whom have recovered from the disease.

The Aiseien of today is a happier place, where a large team of doctors and nurses provide medical care, and tourists come to the facilitys museum to learn firsthand about Japans uneasy relationship with Hansens disease. In 1988, a new road bridge the Bridge to Humanity finally linked Nagashima to the outside world.

When I look at that landing pier now, I think back to when I arrived here all those years ago, Nakao said. Except that now I know Im free to come and go as I please.

I enjoy my occasional trips off the island, but Ive been here more than 60 years although it sounds strange, I can say now that this place really feels like home.

Read more: http://www.theguardian.com/world/2016/apr/14/like-entering-a-prison-japans-leprosy-sufferers-sue-government-for-decades-of-pain

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