In closing her testimony during court proceedings of a class-action lawsuit filed by relatives of leprosy patients, plaintiff Nobuko Harada told the Kumamoto District Court in a quivering voice, “All I want is an apology from the government while I am alive.”
Harada, 74, is among 568 plaintiffs seeking damages over their claim that the government mistreated and discriminated against them after their relatives were diagnosed with leprosy, also known as Hansen’s disease.
She recounted her struggle that started at age 7, when her father was diagnosed with the illness and sent to a national isolation rehabilitation facility in 1951.
Born and raised in Hokkaido, her life was irrevocably changed following her father’s confinement to the sanatorium in line with the prefecture’s leprosy policy, which was endorsed by the government at the time. The policy continued despite an effective drug, introduced to Japan in 1948, that allowed patients to receive care at home. Leprosy is a chronic bacterial disease that mainly affects the skin and nerves, but it is treatable and not highly contagious.
Due to a misconception that it was a “strongly infective and incurable disease,” local government officials thoroughly “cleansed” Harada’s home with antiseptic powder and eventually informed neighbors of her father’s illness.
Harada’s mother immediately lost her job at a fish processing plant as co-workers feared they would also be infected.
Her mother tried to earn a living as a fishmonger, but the family was unable to make ends meet. At night, they would scrounge for food at a nearby fishing port.
“One night, my mother said we should kill ourselves. But I refused and started to cry because I was so scared of dying,” Harada tearfully testified.
Tokyo adopted the “isolation policy” for leprosy patients in 1907 and forced patients across the country to live in solitude “to eradicate the disease.”
Confinement continued until 1996, when the government abolished the anti-leprosy law.
At the policy’s peak in the 1950s, the government segregated more than 11,000 patients into national sanatoriums.
Many of their family members suffered severe isolation and discrimination from society, the plaintiffs argue.
A man in his 80s, who joined the class-action lawsuit on condition of anonymity out of fear he would be ostracized, also spoke in court.
After his father was diagnosed with the disease, he and his younger sister were ordered to live separately in dormitories built for patients’ children. He was only permitted to meet his father at an isolation facility in western Japan once a month.
Another woman in her 70s talked of her traumatic experiences of being bullied by her aunt as an elementary school student, after her mother was confined to a sanatorium with the disease.
In 2001, the Kumamoto District Court awarded ¥1.8 billion ($16 million) in damages to 127 leprosy patients who had filed suit against the central government. The ruling stated that the government’s policy was “unconstitutional after 1960 as the disease was considered curable without confinement.”
But the government has not compensated family members of leprosy patients.
The government argued in the suit by leprosy patients’ kin, filed two years ago, that the isolation policy for patients did not cause damage to their relatives, while admitting segregative measures compounded the discrimination and prejudice against the patients.
“The government has not done anything for us after depriving us of our parents and forcing us to live in poverty through the isolation policy,” Harada said in an interview in February 2016, about a week before joining the suit against the government.
“The isolation policy and ostracism suffered because of the disease severely affected not only patients but also their children, as they were deprived of the chance to foster parent-child relationships,” said Ai Kurosaka, an associate professor who specializes in human rights issues at Tohoku Gakuin University.
The ruling for Harada and the other 567 plaintiffs, who are each seeking ¥5.5 million in compensation as well as a court order for the government to formally apologize to them in major newspapers, is expected to be handed down in March.
But the stigma of leprosy persists.
Fewer than 10 of the plaintiffs have disclosed their real names and accepted interviews, while the majority are only identified by numbers in court.
One male plaintiff in his 30s got divorced two years ago. His wife left him a few days after he told her that his mother was a leprosy patient, according to lawyer Yasuyuki Tokuda, co-defense counsel for the plaintiffs.
“Patients’ family members still face harsh discrimination today. … The facts show how strong the prejudice surrounding the disease still is,” said Tokuda at a conference held in mid-May in Okinawa to address problems related to leprosy.
Tokuda admits a single ruling will not heal all wounds but hopes it will continue the conversation about ending discrimination against people affected by leprosy.
“We have to create a huge wave throughout society to settle the problem just like the 2001 ruling that denounced the government and made it compensate for damages caused by the isolation policy.”