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Lepers still suffer under Japanese prejudice

Richard Lloyd Parry Tokyo
Friday 09 February 1996 19:02 EST
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Tokyo

Even in a country as fond of euphemism as Japan, few names could be so bitterly inappropriate as the Garden of Fulfilment. Situated in Gunma prefecture, on the mountainous north-western side of Tokyo, it sounds like an idyllic place to live out your days - a spacious rural hospital of self-contained chalets, manned by attentive medical staff, with well- behaved elderly residents.

But this is no ordinary old people's home. It has almost no visitors, and few of the 400 residents came here by choice. The Garden of Fulfilment is a leper colony, and its history is a pitiful saga of prejudice, oppression and bureaucratic inertia.

Yesterday, the cabinet approved a recommendation to repeal the Leprosy Prevention Law, drafted 88 years ago. Under the law, 5,800 Japanese are still technically held under mandatory quarantine. Since the introduction of the drug promin in the 1950s, leprosy has been treatable. About 10 new cases are reported every year, but only 3 per cent of the inmates of Japan's 15 leprosariums are still actively suffering from a disease which has long been recognised as being only mildly contagious.

Last month, the Health Minister, Naoto Kan, offered a formal apology for a law that ``has wounded the dignity of the victims and their families and caused them great suffering''.

Lepers have been archetypal outcasts in many societies but in Japan, with its Shinto traditions of cleanliness and ritual purity, their isolation has been particularly cruel. The early leprosariums, typically situated on remote mountainsides or off-shore islands, were little more than concentration camps. Dozens of inmates shared rooms; men who wished to marry had to undergo vasectomies. Many lepers were forced to change their names - not by the hospital, but by their own families.

``Even today, it's difficult,'' said Umekichi Tanaka, head of the patients' council at the Garden of Fulfilment. ``Having a leper in the family, even a cured leper, causes all kinds of problems - you don't get a promotion you were expecting, or a marriage engagement is broken off unexpectedly. People don't want their neighbours to know about it. I can't go back to my relatives because they don't want me.''

During the 1960s inmates began to organise and lobby for the repeal of the law but, without even their families to fight on their behalf, they were voiceless. They were also the victims of a bureaucratic vicious circle: the academic body that the government turned to for advice on revising the law was largely composed of doctors employed by the hospitals.

Since the 1970s, the quarantine law has been loosely applied - inmates are permitted to leave the leprosariums, but their dealings with the outside world are dogged by prejudice. The patients of the Garden of Fulfilment are keen players of gateball - a home-grown version of croquet, popular among elderly Japanese. Twelve years ago the team qualified for the prefectural gateball league, but two years later it was expelled. Without any warning, a clause had been inserted into the league charter, excluding sufferers from infectious disease.

Even the Ministry of Health and Welfare acknowledges that the change in the law is much too late. Two-thirds of the former lepers are disabled; without families to care for them, and with an average age of 71, they have little choice but to stay in the leprosariums. These are being converted into rest homes, paid for by the state but, despite Mr Kan's apology, there will be no direct financial compensation. The Garden of Fulfilment has asked to be readmitted into the gateball league, and awaits the result. But the sporting authorities must understand as well as the government that, within a few seasons, the problem will have died out of its own accord.

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