Ben Hills

The white-painted arched span, like a miniature version of the Sydney Harbour Bridge, is barely 100 metres long – but it took more than half a century to get it built. This highly symbolic bridge links Japan’s mainland with a tiny, mountainous island called Naga-shima which juts out of the warm, grey waters of the Seto Inland Sea, surrounded by a cobweb of oyster-beds. Since 1930, when the first settlers came to Naga-shima, the only way to reach the island was by ferry or by swimming across the fast-flowing straits in which many people drowned. And that was the way most Japanese wanted it to stay, because Naga-shima is one of the country’s most shameful secrets – an island of the damned, where people were exiled, never to return.

The outcasts were not criminals or psychopaths who posed a danger to society, though that’s how they still are treated by the law. Their only crime is that they suffer from Hansen’s disease, leprosy, a disfiguring but not fatal and relatively non-contagious infection, for which a cure has been known for 50 years.

After decades of opposition, the bridge was finally finished in 1988 – but the inhabitants of the island have still not been accepted back into Japanese society. While the rest of the developed world long ago abandoned legal sanctions and disbanded leprosariums, in Japan 6,000 lepers are still confined in isolated institutions like Naga-shima under legislation first passed in 1907 and never repealed.

Masao Ishida, 59, is a stocky man whose only outward signs of leprosy are a missing finger-tip, pebble glasses, and a certain awkwardness in moving about – the disease causes nerve damage. He is the chief executive of the All-Japan Hansen’s Disease Association – though, thanks to drug therapy, he hasn’t shown positive for the bacillus for 40 years.

Mr Ishida has been confined on Naga-shima since 1946, when he was 11 years old. He was grabbed by the police when he went for a haircut at the local barber – an early symptom of leprosy is acute sensitivity of the scalp – and he was packed off to the island in a freight train with no windows. Others were carried away at night in special rickshaws reserved for the dead, drawn by outcasts.

“We were treated like filth, like criminals – rounded up by force and brought here. There was no treatment in those days, no medicine, not much food even,” he says, more with sorrow than anger.

Driving to Naga-shima across the bridge of no return is like crossing a time-warp into biblical days. The road is deserted, the only visitors are the occasional relative – only lepers and those who care for them live here.

About 1,200 lepers live in two institutions on the island, down from a peak of 3,500 in the early 1940s, so that each patient now has the luxury of a tiny flat in the long barracks-like buildings. In the early days, patients slept six or eight to a room.

When the older patients were first transported to Naga-shima, conditions were “terrible”, concedes Dr Masanao Makino, director of one of the sanatoriums. “No staff would work here – the patients had to nurse each other – they had no medicine, no rights, no vote, they were not allowed any money …”

Some committed suicide; some drowned trying to swim ashore towing belongings in buckets; others were caught by the guards as they tried to escape, and locked for punishment in tiny prison cubicles where some died of exposure.

A Buddhist ossuary houses the bones of 2,887 people who crossed the water to Naga-shima never to return – even the cremated remains of lepers were deemed unfit for burial in their family tombs.

Two large sinks at either end of his office for washing his hands are the only precaution Dr Makino thinks necessary when treating leprosy patients. “In spite of its terrible reputation, the disease is quite hard to transmit, even in intimate relationships, and no leprosarium worker has ever contracted it,” he says.

The leprosarium is a self-contained community, with its own sports fields, laundry, shop, workshops for hobbies like pottery, and therapy rooms.

“It is like the difference between heaven and hell to compare conditions now with what it was like when I came here,” says Taeko Nojima, 77, who is in an electric wheelchair. He has been in the leprosarium for 56 years.

The Japanese Government passed the Leprosy Prevention Law in 1907 after it became alarmed at the number of young men ruled unfit to fight in the wars against China and Russia because of the disease. In 1900 it is estimated Japan had 30,000 lepers.

A display in the museum of leprosy at Tama, half an hour by train west of Tokyo, gives a hint of the pitiful conditions in which they lived and died.

Lepers were driven from their jobs and homes and forced to survive by begging – a bronze statue depicts a mother and child embarking on owari no nai tabi, the journey without end, to which they were condemned.

The first to offer shelter and show compassion to the tens of thousands of lepers roaming the countryside were foreign Franciscan missionaries who established a leprosarium near Mt Fuji in the 1890s. Old photographs show nuns in starched head-dresses bathing the feet of ragged lepers in wooden tubs, and there is one deeply moving picture of a blind leper reading braille with his lips – Hansen’s disease patients lose the feeling in their fingers and toes.

The Government established a nationwide network of leprosariums. There are now 13 of them (along with two private institutions) all originally located in remote and isolated parts of the country, six of them on islands like Naga-shima. In 1931, with the military in the ascendancy, the law was made even more draconian, ordering the forcible confinement of anyone with the disease.

And worse. Yasuji Hirasawa, now 68 and working as a guide in the museum, has been a leprosarium inmate since he was 14. He says that if lepers wanted to marry, almost always to other patients, they had to consent to castration or vasectomies, a paipu katto, (pipe-cut) as it’s called.

“It was done to me,” he confesses, shaking his head, “I cried a lot, but eventually I chose marriage and gave up my chance of becoming a father. They thought it was hereditary in those days.”

This, incidentally, happened in the 1950s, more than a decade after Promin and other highly potent drugs against leprosy were introduced.

In 1953 Japan’s Diet (parliament) reconsidered the law, against a backdrop of widespread patients’ rights agitation, which included hunger strikes and demonstrations.

However, says Dr Makino, due to the arrogant intransigence of the Association of Leprosy Doctors – some of whom are still alive, and still refuse to accept the scientific facts about the disease – the provisions mandating the incarceration of patients for life remained on the books.

It was only last April that the association passed a resolution formally apologising for half a century of injustice – the first time, incidentally, that any Japanese medical association has ever apologised for anything.

That the law has stayed on the books so long reflects a stillwidespread public revulsion and fear of lepers in Japan. Even doctors and nurses routinely turn down jobs working with lepers because of family pressure. Patients, who for the past few years have been allowed (illegally) to visit the outside world, say they are subject to irrational stigmatisation. Restaurants won’t serve them, hotels won’t accept their reservations, and in a couple of cases district hoop-ball (a type of croquet) associations have refused to register leprosarium teams, fearing contamination from the handshake that precedes the game.

The Asahi newspaper the other day carried a plaintive letter from a man whose fiancee’s parents had called off their wedding when they discovered there had been leprosy in his family in the Edo period, which ended in 1867.

Belatedly there are moves to right nearly a century of government-sanctioned wrongs against lepers. An expert committee is studying the issue, and a reform bill should go before Parliament next year.

However, the bitter irony is that for most of Japan’s lepers it will be too late. Even though almost all Dr Makino’s patients have been free from the bacillus for decades, they are too old, incapacitated, and institutionalised to be able to make their way in the outside world, says the doctor.

Tragically, some of the patients I spoke to are now concerned that the planned repeal of the law will leave them in the lurch. As well as free board and lodging and medical care, the 6,000 people classified as lepers now receive a monthly allowance of $1,300, which is considerably higher than other sickness or disability pensions.

Mr Ishida reluctantly agrees that, even if he was free to go, he would choose to remain on the island. But that does not mean he and the other patients won’t continue their campaign: “We were not allowed to live our lives as human beings,” he says. “But now they should change the law so that at least we can die with dignity.”

The Treatable disease-but still it ravages

HANSEN’S disease is one of the world’s most ancient and dreaded diseases, mentioned in both the Old Testament and in the eighth century Kojiki, Japan’s oldest chronicle.

It occurs mainly in warmer parts of the world, although there have been serious outbreaks as far north as Scandinavia. The disease is named after Dr G. Armauer Hansen, a Norwegian who discovered the bacillus that causes it in 1873.

Related to tuberculosis, the bacillus is spread by skin contact and is relatively non-contagious – all attempts to pass it on deliberately have failed. Doctors now believe other factors, such as a weakened immunological system, may predispose some people to it. It affects the skin and nerves in the “cooler” peripheral parts of the body – the digits, nose, throat and voicebox, often causing severe disfigurement, blindness and paralysis if untreated. Patients lose sensation in fingers and toes and often lose digits in accidents. Since the discovery of Promin in 1943, leprosy has been treatable. Modern “multi-drug therapy” with sulphone drugs can cure mild cases in a matter of months. The World Health Organisation says there are 2,400,000 lepers in the world, and 60,000 new cases are reported annually – about half of those in India. In Australia, leprosy is now rare, although cases are still reported among Aboriginal communities, especially in the Northern Territory. According to the NSW Health Department, by 1991 the cases in this State had dwindled to five.

Publishing Info

Pub: Sydney Morning Herald
Pub date: Saturday 8 July 1995
Edition: Late
Section: Spectrum
Sub section: Page: 9
Word count: 1535
Photography: Mayu Kanamori
Map: Honshu, Nagashima Is., Seto naikai, Kyushu
Caption:
1. Prisoneers of Naga-shima … A historic photograph show life on the island.
2. Yasuji Hirasawa, now 68, has been an inmate since he was 14. Before marrying he was castrated.