Yasuji Hirasawa is longing to return to his home in Ibaraki Prefecture and see his parents’ grave, but it is an impossible dream for the 80-year-old former Hansen’s disease patient.
“My siblings won’t allow me to do so, and my brother’s wife probably does not even know of my existence,” said Hirasawa, who has lived in a government-run sanitarium in a wooded area in Higashimurayama, western Tokyo, since he was 14.
His story shows how Hansen’s disease patients are still isolated even after the Kumamoto District Court ruled in 2001 that the government’s segregation policy, under which patients were forced to enter special sanitariums with limited freedom, was unconstitutional. Then Prime Minister Junichiro Koizumi issued an apology to the patients after the ruling.
The discriminatory policy was introduced in 1907 and continued long after a cure for the disease otherwise known as leprosy became available after World War II. It fed the misperception that the disease was hereditary, leading to a number of forced abortions and sterilizations, before the Leprosy Prevention Law was finally repealed in 1996.
“People cannot dispel prejudice so easily after the government maintained the segregation policy for such a long time,” Hirasawa said at the National Tama Zenshoen Sanitarium. “Some former patients have reunited with their families, but I believe many still cannot do so out of fear of prejudice and rejection.”
Hirasawa now lives with his wife, whom he met in the sanitarium and married in 1950. They have no children because he had to go through a sterilization operation before they were allowed to live together in one room, he said.
In an effort to promote public understanding of Hansen’s disease, Hirasawa and another former patient, Osamu Sagawa, until last year had been recounting their experiences at a museum on the disease that opened next to the Zenshoen sanitarium in 1993. The museum houses a collection of items related to the disease and shows the harsh living conditions in sanitariums.
It has attracted more than 140,000 visitors, including elementary and junior high school students. Following expansion work, it reopened in April as the National Hansen’s Disease Museum.
The museum is now divided into three sections — the history of the disease in Japan, descriptions of patients’ lives in sanitariums, and a presentation of how patients and former patients survived the harsh environment and how they found meaning in their lives.
Exhibits include shabby clothing that patients were forced to wear and the poor meals they had to eat. Excerpts are displayed from a book by a former patient vividly depicting patients’ struggles.
Among the main presentations is a replica of a “yamabukisha,” a small dormitory house for single men. Also exhibited is a reconstructed cell in which patients who were considered unruly were detained. Videos show former patients talking about their experiences living in sanitariums.
After Hirasawa was hospitalized last year, Sagawa, 76, became the sole former inmate recounting his experiences at the museum. Several times a week, he talks about his life at a sanitarium in Kusatsu, Gunma Prefecture, and how he has fought along with other patients to eradicate the persistent prejudice.
“I faced many sad stories at the sanitarium,” Sagawa said in his recent speech to a group of some 30 nursing students. “A family of nine committed suicide in the wake of the occurrence of the disease, while a patient killed himself after his son kept telling him to die.”
Then he told how he fought the Leprosy Prevention Law, including his participation in a famous protest at the Diet in 1953, where several Hansen’s disease patients staged a sit-in and hunger strike.
Though the protest did not prove successful, Sagawa emphasized the importance of the patients’ persistent struggle.
“If it were not for the patients’ battling, we would never have accomplished anything,” such as winning the court ruling, he said.
He also talked about the breach between a patient he knows and the patient’s daughter. “He contributed to a newspaper, saying he wanted to see his daughter, and found her. But she refused to see him as she cannot tell her husband about him.”
It has become tough, however, for Sagawa to keep telling his story due to rheumatism, and he expects Hirasawa to come back.
But Sagawa, who also serves as chairman of the residents’ council at the Zenshoen sanitarium, is concerned about former patients still living in the sanitariums, given that the institutions may be abolished or merged as the number of residents decreases.
About 3,000 former patients now live in national sanitariums across Japan, far fewer than the 30,000 around 1900, according to the Health, Labor and Welfare Ministry.
“I’m surprised that so many people — both children and grownups — do not know about Hansen’s disease,” Sagawa said. “Prejudice stems from ignorance, and that is why I continue telling my stories.”