Leprosy

TOKYO, Feb. 12 Kyodo

Most leprosy patients in Japan did not or could not have children at state-run sanatoriums mainly because they were required to be sterilized when they married, a report recently released by a third-party fact-finding council shows.

It also indicates that not a few patients were asked when they were accepted at the facilities to agree to allow an autopsy to be performed on them after their death, and that facility staff urged patients to assume false names to disconnect them from their past lives.

Given the fact that leprosy patients were segregated in isolated sanatoriums for decades until the Leprosy Prevention Law was repealed in 1996, the council notes in the report, ''It is necessary to map out prevention measures for such human rights violations as we could not stop imposing the sufferings on the patients under the current human rights protection system.''

The report, compiled by the Japan Law Foundation on commission by the Ministry of Health, Labor and Welfare, stresses the need to establish a human rights protection system for patients under public sanitation policies, based on reflection on the past misdeeds, and to enable the patients to take part in the policymaking process.

The council, a unit of the Japan Law Foundation, interviewed 841 people -- 758 residents at 13 state-run sanatoriums, nine at two private facilities, 69 who already left the sanatoriums and five family members of leprosy patients -- during a one-year period from July 2003. The report was released in late January.

Among the 758 at the state-run facilities, the average age was 74.9, and 83.2 percent of the respondents had been under medical treatment there for more than 40 years; a quarter of them stayed there for 60 to 69 years. This suggests that most of the patients were confined there during their reproductive years, the report points out.

The survey shows 95.1 percent of the respondents did not or could not have children, with 49.0 percent of the childless people citing sterilization while 23.2 percent were unmarried.

''The figure shows the sanatoriums played major roles in restricting the patients' reproduction. They should be blamed for this as medical facilities,'' the report says.

As women at the sanatoriums were forced to have abortions if they were found pregnant in many cases, a woman, who was born between a patient couple in 1944, said in the interview her parents escaped from the facility to give birth to her before being forced to return there four years later.

''A friend of my mother at the sanatorium once told me she had envied my mother as she could escape to deliver me, as the mother's friend herself was forced to have abortion,'' she said.

Among the nine respondents at the private sanatoriums, both of which are operated by Catholic organizations, none were sterilized, according to the survey.

The report also shows 17.2 percent of the respondents at the state-run sanatoriums said they were asked to allow an autopsy to be performed on them after their death. A man who entered one of the facilities in 1949 said, ''Everyone here was asked to agree to an autopsy.''

''The patients entered the sanatoriums for treatment, but some of them were really shocked as they were requested to sign a letter of consent for an autopsy,'' the report notes.

The research also found almost half of the respondents assumed false names, with 12.8 percent of them saying they were urged to do so by facility staff.

Patients were not allowed to leave sanatoriums without permission, and some violators imprisoned without due process. A male patient called his sanatorium cell ''Auschwitz in Japan.''

In addition to a proscribed life at sanatoriums, leprosy patients also had to struggle against social prejudice. Under such circumstances, some 90 percent of the respondents said they have seen or heard of suicides of their fellow patients or of members of the patients' families.

A man who was admitted to a sanatorium in 1953 said in the interview, ''I was asked by my mother to hang myself when I was found contracted with Hansen's disease shortly after graduating from an elementary school.''

The report notes some 60 percent said they did not or could not attend their parents' funerals even though they received the news of their deaths.

A man, who stayed at a sanatorium since 1951, responded, ''I learned of my mother's death immediately in 1996, but I did not attend her funeral as my brother suggested he did not expect me to show my face with leprosy aftereffects to the attendees.''

Under such circumstances, 12.3 percent responded their relations with their families or relatives ''have been broken off.''

Meanwhile, the five family members of leprosy patients said in the interviews they also faced difficulty finding jobs and marrying because of the disease of their relatives.

A man born in 1949, whose father and sister had leprosy, was urged to withdraw from his high school after a company, at which he sought employment, told school officials it would not employ any of the student body as it included a family of leprosy patients.

Some of family members, on the other hand, confessed they could not wipe out their own prejudice against their diseased relatives. They were reluctant to bring together the relatives and their spouses or children and refused to receive their remains after their deaths.

''They have played both roles of victims of discrimination as well as victimizers of their diseased relatives,'' the report notes.

In a landmark ruling in May 2001, the Kumamoto District Court found both the Japanese parliament and government responsible for the suffering of leprosy patients by failing to repeal the leprosy prevention law until 1996 and ordered the state to pay compensation for forcing the patients into isolation.

Some of the patients welcomed the ruling, saying in the interviews they are now able to go out without any restrictions and that people have faced them kindly.

Others said, however, they have been forced to give up their hopes and the ruling has not changed their lives; patients with deformed faces or bodies remain reluctant to step out and see their relatives.

Asked about his hopes for the future, one man said, ''I would like to rent a small apartment with my real name on the door and to pay taxes and public utility charges so that I can be accepted as a human being once more.''

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