RIGHTS-JAPAN: Leprosy Patients Demand End to Isolation

By Suvendrini Kakuchi Reprint | | Print |

Suvendrini Kakuchi

TOKYO, Sep 8 1998 (IPS) - Kyosei Arata is 79 years old, but life for him virtually ended 57 years ago after he was diagnosed as having leprosy.

“My life ended then,” he says bitterly. “The Japanese government forced me to enter a sanitarium, cutting me off from my family and friends forever. I might as well have died.”

To this day Arata, who was 22 years old when his illness was diagnosed, has remained quarantined under regulations by the Japanese government.

Now, after enduring decades of physical and mental pain that several times drove him to try committing suicide, Arata says he needs to fight the discrimination he has been through and regain some self-dignity.

Last week, Arata joined a group of 13 leprosy sufferers in Kumamoto district in east Japan in suing the government for keeping them in quarantine forcibly.

In an 11 million U.S. dollar suit, they accuse the government of willful negligence pointing out that they were kept for more than 40 years after the discovery of promin, a drug for treating leprosy and most of its symptoms.

Mitsuhide Yahiro, one of the group’s attorneys, said the 13 ex- patients are seeking compensation for violation of human rights under the leprosy prevention law which hampered treatment. The law was abolished in April 1996.

The law was adopted in 1953 after Japan had promin, in a bid to control lepers by isolating them in special facilities for treatment. More than 2,000 patients were forcibly sent to leprosariums, from which they were not allowed to leave.

Despite a recommendation by the World Health Organisation in 1960 that such isolation policies were no longer needed, the Japanese government abolished quarantine laws only two years ago.

Leprosy is waning around the world, with global prevalence falling from 2.3 to 1.7 per 10,000 population during 1995-1996. In the past 11 years, the leprosy problem has been reduced by 82 percent, WHO says.

Arata recalls how two policemen came to his home one day after he was diagnosed with leprosy.

“They told me I had to leave immediately with them to a far away place which is where lepers live,” he says. “I tried to run away but they forcibly took me away.”

During that time decades ago leprosy, a chronic disease caused by a bacterium that attacks the nervous system and causes disfigurement in some patients, was considered a hereditary and highly contagious disease. Family members visiting patients had to wear body suits and walk though pools of disinfectant.

As a result, patients and even their families were shunned in community. In Arata’s case, prejudice and discrimination were such that his parents asked him to change his name so he could be erased from the family register, and not be a stigma to his siblings.

When Arata wanted to marry another patient at the sanitarium, he says he had to promise health officials he would be willing to be sterilised. “They did not want lepers to have children because we were considered outsiders. We were dirty and so were polluting the purity of the Japanese race,” he says.

It did not help that during the Pacific War years, lepers were looked upon as a burden by the Japanese government because they were not contributing to the war effort, Arata recalls. This attitude made it easy for prejudice to grow against them among the public, argue the plaintiffs in their lawsuit.

Likewise, Arata points out that there was no effort to educate the people about the disease to make it easier for the ex-patients to get back into society.

In 1995 the Japan Leprosy Association under the auspices of the Health and Welfare Ministry submitted a report demanding that the quarantine law be repealed. The group said health authorities had been tardy in reviewing the law and the government should act immediately to correct the suffering it caused leprosy patients.

But despite the adoption of the recommendation, some 5,200 people with Hansen’s disease, as they are known now, live in Japan’s 15 sanitariums. Most of have recovered though some have lost their eyesight and have difficulty in moving their limbs. The average patient’s age is around 71 years old.

Most of these people have nowhere to go, after spending more than half their lives in isolated sanitariums and often losing all contact with relatives.

Arata says his parents left him some money so he and his wife managed to build a small house and scrape a living by doing odd jobs. “But there is no change in our lives despite the scrapping of the law. People are more tolerant of us but still treat us as dirty,” he explains.

Leprosy patients receive 6.3 dollars a day worth of food from the government and a small allowance. Even if it does not change the past or erase discrimination, Arata hopes the lawsuit will at least bring survivors a bigger compensation package to help them to live their last years in a better environment.

He also hopes the lawsuit will educate not only Japanese but the rest of the world about the abuse of their human rights, paving the way for more decent treatment for other patients of difficult diseases.

The plaintiffs also want to discuss the lawsuit at the 15th International Conference on Hansen’s disease set for Sep 7 to 12 in Beijing.