Former Hansen's disease patients shed light on history of discrimination
Although the prejudice and discrimination against them brought on by the government's prior segregation policy persist, the memories of their hardships are now fading in society. To ensure that lessons learned from the misguided policy are passed on to future generations, former patients are speaking up about their experiences.
Hansen's disease, also known as leprosy, is an infectious disease caused by Mycobacterium leprae. It doesn't spread easily and is fully curable with appropriate treatment. However, the Japanese government maintained a forced segregation policy for nearly 90 years until the Leprosy Prevention Law was abolished in 1996.
The segregation policy led to severe prejudice and discrimination against patients and those who had recovered, as well as their families. In 2001, the Kumamoto District Court ruled the policy unconstitutional and ordered the state to pay compensation. The government issued a formal apology after deciding not to appeal the ruling.
At National Sanatorium Matsuoka Hoyoen in the city of Aomori, one of the state-run Hansen's disease facilities, the remains of 1,179 former patients who were never able to return home rest in a modest ossuary.
'Even after we're gone, this place must be preserved, whatever it takes,' said former patient Masaru Sato, 76, as he clasped his hands in prayer toward his fellow residents.
The sanatorium was established in 1909 and has accepted over 3,000 residents to date. As of the end of February this year, there were 40 residents, with an average age of 89.6. Behind their quiet lives today lies a long history of hardship and painful struggles.
Sato developed Hansen's disease just before graduating from elementary school. His mother, after reading a letter from his teacher, told him that he could not attend junior high school. 'I felt like I had been thrown into a bottomless pit,' Sato said. For about two years, he stayed at home in isolation with his father, who also had the same disease.
Discrimination eventually extended to family members. One day, his sister came home crying after being told not to come to school. His father had been resisting the move to a sanatorium, but perhaps because of this incident, the father made up his mind to enter Matsuoka Hoyoen with Sato. However, the father died soon after. The local authorities refused to carry out cremation due to the disease, and the father's body had to be buried.
In April 1963, then-15-year-old Sato was admitted to a youth dormitory at the sanatorium. The name 'Masaru Sato' was given to him by a senior resident; it was customary at the time to use a 'sanatorium name' to shield family members from discrimination.
Eventually, residents at the sanatorium became able to go out more freely as restrictions were eased in stages. Sato felt exhilarated when experiencing the outside world. He obtained a driver's license to expand his horizon and hoped to leave the facility as quickly as possible.
The abolition of the Leprosy Prevention Law, the court ruling against segregation and the government's apology — all of these seemed to lower the barriers for residents to reintegrate into society. However, Sato could never be free from anxiety. 'If society won't accept me, I'd rather stay with people who share the same pain,' he said in explaining why he chose to live the rest of his life in the sanatorium.
The government pledged that those who wish to stay in sanatoriums could do so for as long as they want. However, discussions have only just begun on how to preserve these facilities and pass on their historical lessons after no residents remain.
Since 2019, Sato has been the sole manager of the Matsuoka Hoyoen residents' association, which was set up to protect their human rights. Negotiations with the city of Aomori regarding the future of the sanatorium remain stalled. Sato hopes to exchange views with local residents, but interactions cut off by the COVID-19 pandemic have yet to fully resume.
'It's tough, but we must move things forward,' Sato said anxiously. 'This place must never be allowed to revert to a field.'
Ryuichi Kimura talks about his pottery at his workshop built on a plot adjacent to Matsuoka Hoyoen. |
Kahoku Shimpo
Ryuichi Kimura, 81, another resident, has built a pottery workshop on a plot of land next to the sanatorium. Looking at his works — over 200 — displayed there, he says he doesn't want society to forget. 'I want to leave proof of how I lived with Hansen's disease,' he says.
Kimura was born the eldest son of a farming family in Akita Prefecture and developed Hansen's disease as a junior high school student. He entered the sanatorium after being told that he would be discharged in six months. But by observing others, he quickly realized that it would not be easy to leave.
From around 1955, restrictions at sanatoriums nationwide began to be relaxed, and some patients voluntarily left after recovery. Kimura also recovered with treatment and reintegrated into society in 1964. Thanks to the economic boom with the Tokyo Olympics held that year, he was able to make a living by working in the construction sector.
However, his hands, numbed by the aftereffects of the disease, swelled painfully from the hard labor. Unable to find doctors at general hospitals who understood his symptoms or could treat them, he had to return to the sanatorium repeatedly for care.
After undergoing several surgeries, he moved back to Akita Prefecture upon marriage and worked as a driver for 19 years.
Although he discovered a passion for pottery and enjoyed fulfilling days with workmates and friends, thoughts of how he would spend his twilight years always lingered. 'I had no children and no place to take me in. I always knew I'd return to the sanatorium,' he says. He never disclosed his past at the sanatorium to those around him.
Shortly before turning 50, Kimura returned to the facility in 1991. He continued his pottery and crafted user-friendly pieces for residents with limited hand mobility, including double-walled teacups that insulated heat and cups with attachments to hold straws. His creations — inspired by feedback from residents and staff — offer a glimpse into life in the facility.
'There are many records of the battles fought by those before us, but only a few people will ever pick them up,' Kimura said, adding that he hopes to widen public awareness through pottery that people are familiar with. 'To eliminate prejudice, we need the attention of people in our immediate neighborhoods.'
The government has implemented awareness campaigns and human rights education to combat prejudice against Hansen's disease, but public understanding remains limited.
A national survey conducted in December 2023 showed that only about half of respondents said they 'knew' or 'knew somewhat' about the forced segregation policy. Only 36.2% were aware that sanatoriums still exist and that former patients continue to live there.
While society's interests and memories may fade, the scars left in the lives of former patients remain.
'I want to imagine that if I hadn't gotten sick, maybe I'd have inherited the family farm and been surrounded by children and grandchildren now,' Kimura murmured. 'But I just can't picture it.'
This section features topics and issues from the Tohoku region covered by the Kahoku Shimpo, the largest newspaper in Tohoku. The original articles were published March 23 and March 24.
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