Bridging segregation

Two island leprosariums joined to Honshu

By William Wetherall

A version of this article appeared as
"Bridge to the outside: Gate-less span ends isolation for island's leprosy patients" in
The Japan Times Weekly, 16 April 1988, page 4

As Japan's major islands are being linked by bridges and submarine tunnels, their residents-like the over 1,400 leprosy patients who live on Nagashima, a small island in the Inland Sea-find lots to squabble about, among themselves when not with neighboring islanders. But Nagashima residents seem to have settled their differences with the Ministry of Welfare, concerning a gate that the government said was to protect them from the outside world.

May 11 marks the opening of a bridge less than 200 meters long, from the island of Nagashima, part of Okayama prefecture, to Honshu. For over have a century, the island has been entirely occupied by two of Japan's largest national sanatoriums for victims of leprosy.

Nagashima, as its names implies, is a long island. From the air it looks like one dragon snapping at the tail of another. Indeed, there are really two islands, joined by a tiny bridge across a small channel cut for boats through what was originally a natural land bridge.

Oku Komyoen National Sanatorium occupies the half of Nagashima which is closest to Honshu. It was built by local governments in 1909, destroyed by a typhoon (which took the lives of 173 patients and 14 staff) in 1934, and designated a national leprosarium in 1941. Today it cares for about 550 patients.

Nagashima Aiseien National Sanatorium occupies the half of the island furthest from Honshu. It was the first facility in Japan to be built as a national leprosarium. It now cares for about 880 patients.

Government administrators and patients on Nagashima disagreed with one another when the Ministry of Health decided in early 1987 to put a barrier across the road on the island side of the bridge. The barrier, which was to have been like a toll gate with a cross bar, had not been considered when construction on the bridge began in December 1985.

The gate was started in October 1987, but it came down before it could be finished, in response to strong protests from the National Hansen's Disease Patient Council, which represents the autonomous associations of patients at Japan's 13 national leprosaria.

"It's there to protect the patients," argued a Ministry of Health official who wanted the council's "understanding" so construction could be completed. Sogano Kazumi, general director of the national patient council and himself a victim of leprosy, was quoted in the same newspaper to have said: "Why build a gate? I feel enraged at this evidence that the thinking behind the government's mistaken segregation policy still remains."

"The island is a place where patients can get treatment," said a non-patient government administrator at Komyoen. "People and cars that have no business there should not come in."

Leaders of the two patient self-government associations think otherwise. "The gate destroys our hope for free exchange with society," said the head of the Komyoen association. "It feels like a wall between us and the mainland," agreed his Aiseien counterpart.

Before World War II, patients were jailed on the island if caught trying to escape. They could not vote, and until 1949 they had to use special money which could not be spent outside.

Leaving the island is no longer a problem. Patients have been free to come and go since the 1950s. Outsiders, too, are not checked when they board or get off the ferry. The gates to Japan's other national leprosaria are also open.

According to Jujiro Takase, the administrative director of the national patient council, the government made an agreement with a local association of Honshu fishermen to protect their fishing rights from poachers who may flock to the island when the bridge is open to vehicle traffic. Nagashima administrators, and some patients, worry about the disruption of island life, and the traffic accidents and beach pollution, that will come with a sudden influx of tourists.

Takase has been an Aiseien patient since 1963 when leprosy struck him at the age of 38. He was recently the head of the Aiseien Patient Self-Government Association, and though still officially a Nagashima patient, he now works at the national council office on the grounds of Tama Zenshoen National Sanatorium, an hour by train and bus from central Tokyo.

Like other national leprosaria, Zenshoen's gate is open and unguarded. "It's useless," Takase said of the shuttered guide post that stands unused at the entrance. One can still see vestiges of the moat that once surrounded the grounds to keep patients in.

Takase feels that leprosy patients have come a long way toward being treated like other human beings, and he believes that the Nagashima bridge symbolizes integration. But Nagashima patients agreed to a government compromise that Takase himself, when explaining it, did not seem to oppose.

For the first year after the bridge is opened, a private security guard will be on duty at a simple guidepost beside the incoming road on the island side. Patients and staff will be waved through. Others will be stopped, not to keep them off the island, but to give them directions and information, in order to minimize the sense of invasion, maximize safety and privacy, and satisfy the fisherman.

At both Komyoen and Aiseien, the sex and nationality breakdown is 60 percent men and 12 percent Koreans. Nationwide, about one person in 1,000 had leprosy in Japan a century ago. Today the prevalence is less than 0.1 in 1,000. The disease is well controlled and new cases are rare.

As of April this year, Japan has about 7,000 leprosy patients, according the Ministry of Health and Welfare's Medical Affairs Bureau, National Sanatorium Section, which manages Japan's 13 national leprosaria. Some 60 percent are men and 5.4 percent are foreigners, mainly Koreans. Three private leprosaria care for about 100 patients.

But even today, over 1 person in 1,000 has leprosy in Okinawa prefecture, comprised of Japan's southernmost islands. Okinawa is populated by a partly assimilated minority group that calls its own people Uchinanchu (Okinawan people) and majorities Yamatunchu (Yamato people). With a population of barely 1 million, Japanese in Okinawa accounted for 1,440 (17 percent) of all leprosy cases known in 1985. And over half (27) of the year's 42 new cases were reported from Okinawa.

The patient population is rapidly aging, and it is shrinking more from death than discharge. In the past, men outnumbered women by three or four to one. But men have shorter life spans, are dying faster than the women, and by the end of the century they may be the minority sex.

At least half of the patients, according to Takase, are disabled and need daily nursing care for the after effects of severe leprosy, like blindness and other physical disabilities. Many of the others cannot be easily discharged because they have spent most of their life in a leprosarium. They have no basis for economic independence in the outside world, or family that is willing or able to support them.

And there is still prejudice caused by fear of a disease that the general public knows very little about. Many patients, and even nurses who have worked at leprosaria, are stigmatized by the mistaken belief that leprosy is congenital or easily transmitted.

The Tofu Kyokai, a Hansen's disease foundation started in 1952 in posthumous honor of the Taisho Empress Dowager, who had led the imperial family's promotion of support for leprosy patients, continues to publish pamphlets which tell the truth about leprosy. Each issue of the foundation's annual magazine lists the following information.

"Hansen's disease is not inherited; it is a chronic contagious disease caused by a pathogen that has an extremely weak contagiosity; there is practically no risk of outbreak other than by infection during infancy; not all patients produce the bacillus, and infection will not occur through light contact with patients; it is not an incurable sickness, but like tuberculosis it can be cured; the changes which remain after it is cured are simply after effects; for the sake of both the patient and public hygiene, discovery at an early stage and suitable treatment are important."

Leprosy patients have generally been allowed to marry, with other patients or with staff or other non-patients, but not unconditionally. The male usually receives a vasectomy and the female is sterilized.

The Eugenic Protection Law, which covers sterilization and abortion, specifically permits the sterilization of leprosy patients in the same paragraph that allows such operations for victims of hereditary diseases. In principle an operation is performed upon a doctor's advice, but with the patient's or couple's consent and the approval of local and national review councils. But Takase feels that the patients are pressured in such ways that make the operations virtually compulsory.

During the past two decades, the number of patients living in their own homes has increased from 700 to 900. This means that about 8,000 people are receiving treatment for leprosy. Takase estimates that there may be as many as 2,000 more former leprosy patients. So about 10,000 people in Japan today have or have had leprosy.

Since roughly 200 are dying each year, and the death rate is increasing with the aging, the inpatient population may fall to only 3,000 by the end of the century. The average age will rise to over 70. So Japan's leprosaria are becoming geriatric hospitals for people with leprosy handicaps.

Takase foresees a day when the national leprosaria will begin to merge their patients, or close, or (more likely) diversify into other kinds of medical services. But for now there are no plans for change, and Takase predicted that the facilities will continue their present operations for at least another ten years.