After Decades Locked Away, Japanese Lepers Salute Life

Fumie Suzuki was 21 when she was found to have leprosy. Her family locked her in a room and slid her food through the doorway. After a year, she was exiled to an isolated leprosarium.

Alone, she made the journey to a colony to which no roads led, stumbling on her weak, nerve-damaged legs. Her mother’s parting words were: “Never come back. And die quickly.” But more than 50 years after being left to die, she recently celebrated her liberation, as Japan finally became the last industrialized nation to free its lepers and close its colonies.

“We were born free, but when we got leprosy, that was taken away from us,” said Miyoji Morimoto, head of the Tamazenseien Patients Assn., a group named after the leprosarium they were banished to.

Wearing a white wedding tie at a recent celebration of the lepers’ newfound liberty, he declared: “At last, we have become like normal handicapped people. Now we are members of society.”

Behind Suzuki and Morimoto’s triumphant redemption, and that of thousands of others like them locked up in Japan’s leprosariums for half a century, is an astounding saga of fear and social bias, bureaucratic bungling and medical cliquishness, even prewar military ideals about purifying the Japanese race. Japan continued to isolate its lepers decades after the rest of the industrialized world had freed theirs, ignoring a breakthrough medical cure accepted by all other nations.

Yet their tale also reflects unremitting courage and heroism--particularly by Fujio Otani, the doctor who fought the medical and bureaucratic establishment for decades to win dignity, and ultimately freedom, for Japan’s lepers.

Japan Stands Alone

Throughout the ages, leprosy was considered one of humanity’s most deadly diseases, and the afflicted were banished from society. But when Promin, an effective cure, became widely available in the 1950s, leprosariums were shut down in all developed countries--except Japan.

Here, until this spring, 5,800 people diagnosed with leprosy before 1953--the year by which almost all of the patients had been incarcerated--were still locked up in Japan’s 15 leprosariums. They were held in the belief, long discounted by the international medical community, that leprosy is both highly contagious and hereditary.

In consultation with medical specialists, the Japanese government decided early in this century that those with the defective genes and disfiguring disease had to be isolated and stamped out of the Japanese race. The Leprosy Prevention Law, originally promulgated in 1907 and steadily strengthened until its final incarnation in 1953, required that leprosy patients be quarantined.

“This law was made when Japan was a militarist nation, and the doctors who headed the leprosariums were all militarists,” said Kaoru Matsumoto, who spent decades in a leprosarium. “They saw leprosy as Japan’s shame. They thought, ‘We have to protect the superb Japanese race from leprosy.’ They didn’t trust medical knowledge. They believed, ‘Until the last one is killed off, they must be isolated.’ ”

In the years leading up to World War II, tens of thousands of Japanese lepers were rounded up by the national police and put into leper colonies. For half a century, Japan’s lepers were virtually wiped out of the national consciousness--forgotten by the medical establishment, the government and their own families.

Otani put his own career on the line by relentlessly fighting for better treatment of lepers, more public money for them and repeal of the law that imprisoned them. Finally, in March, Otani’s efforts paid off: A bill erasing the Leprosy Prevention Law and setting the patients free passed the Japanese parliament.

“As long as the Leprosy Prevention Law was still on the books, I knew that the prejudice would never disappear,” Otani said. “I vowed to fight until the law was repealed--to prove the law was unnecessary.”

It was a handful of strong-willed crusaders--some blind and paralyzed, others in wheelchairs--who came to the recent gathering to celebrate their freedom and thank the man who listened when no one else would.

“He helped us. Without him, this would have been impossible,” said Matsumoto, 78, raising his glass in gnarled fingers in a toast.

Barred Behind a Moat

Matsumoto was sent to Tamazenseien 61 years ago, when he was 17. In those days, conditions were grim. A dense forest hid patients from the eyes of passersby, and a moat surrounding the colony prevented escapes. Upon entry, new inmates were stripped of their possessions and presented with special leper colony currency and inmate pajamas. Patients were crammed eight to 10 in tiny, dirty rooms. Doctors and medical aides kept their distance, and the strong patients cared for the weak.

“The conditions were horrible. The doctors and nurses wouldn’t come near us. We did everything, from growing and preparing food to burying the dead,” Matsumoto said through lips slackened by paralysis.

Because of fears that the disease was hereditary, his family was driven out of a tiny town in Saitama prefecture and fled to nearby Tokyo. Occasionally, family members made secret visits. But in 1955, his sister, by then married, said she feared that her husband would find out about him and divorce her.

“Lots of people would get a divorce if they found out you were related to a leper in those days. Many of them [the relatives] killed themselves. So I told her, ‘If you are that scared, don’t come,’ ” Matsumoto said.

Matsumoto hasn’t heard from his family since. He said they are probably dead. At 28, he lost his sight. But a devout belief in God, he said, gave him strength to fight and faith that he could be cured, even when the doctors denied it was possible.

When Promin came to Japan, many lepers--allowed to leave the leprosariums briefly--went to Tokyo to demand their freedom. They staged sit-ins and hunger strikes in front of the Health Ministry. But they were ignored, and soon the issue slipped into obscurity.

Untreated, leprosy can result in horrible deformities: loss of extremities, loss of hair and paralyzing nerve damage. Just 3% of the population is susceptible to the bacterium. Rather than tearing through a community like an epidemic, it strikes only certain individuals--a circumstance that gave rise to myths in many cultures that lepers were being punished for sins in a previous life.

In the United States, patients were released from leprosariums in the 1950s. Today, most of America’s 6,000 leprosy patients are integrated into the general population, although 140 patients still live by choice in a leprosarium in Carville, La.

In Japan, the strong prejudice thrived even among doctors. Even after the World Health Organization’s International Leprosy Congress, held in Rome in 1956, pronounced the disease curable, Japan’s leprosy specialists refused to acknowledge that it was not hereditary and that it could be cured.

In May 1995, Japan’s Society of Leprosy Specialists finally acknowledged that the disease could be cured with proper treatment, clearing the way for abolition of the law. But privately, many still express doubt.

“Long-standing [Japanese] doctors did not believe in the effectiveness of Promin,” said Dr. Yo Yuasa, president of the International Leprosy Assn. “They saw improvement, but they did not believe patients were cured. By clinical appearances, it is not so easy to judge; there are all those deformities and so forth. And even if it is cured--I would like to say arrested--it could still come back.”

Many doctors and health bureaucrats say they believe they were doing patients a favor by giving them refuge from an unforgiving society--even if the gift was forced on them.

“The outside world is not a comfortable place for them to live,” Yuasa said. “Japanese society was not ready to accept people with a stigma--with visible signs of leprosy. Their coming here was voluntary, in the sense that society was so inhospitable.”

Some patients express a different view. Many speak angrily of the doctors who refused to admit they were cured in the face of clear medical evidence, and wonder if it would have been better to have been born somewhere like India, where a lack of public funding means patients must live with families.

“I went to India and saw old men [with leprosy] holding beautiful babies,” Yasuji Hirasawa said. “We are in a rich country, so we are hidden away. But who is happier?”

In a vicious cycle that pushed Japan further and further from the standards of the international health community, the Health Ministry deferred to the specialists, and the specialists stubbornly clung to outdated beliefs.

“The leprosy specialists hardly read any international journals,” Yuasa said. “They hardly read anything new since they graduated from medical school 20, 30, 40 years earlier.”

But one man was different.

A Doctor’s Difference

After several years of practical experience, Otani became a health bureaucrat. From within the government, he waged a campaign to liberate Japan’s lepers. In time, his personal mission came to consume him, eventually driving him to leave the ministry and join a small association of Japan’s leprosy specialists where he could pursue the issue full time.

“This is my life’s work,” he said. “I have been working on this for 50 years.”

Otani, a specialist in tuberculosis, was deeply influenced in medical school by a particular teacher, a spiritual man with a profound respect for human rights who believed that one day there would be a cure for leprosy. When Otani eventually became director general of the Health Ministry, he battled for a bigger budget and humane treatment.

By the early 1970s, conditions had improved considerably. New cases were being treated as outpatients, and doctors had begun to enter patients’ rooms and ride in cars with them. New housing was built. Telephones and televisions were brought in. Now patients live in small cottages, comparable in size to the dwelling of a Tokyo bachelor. Patients have gradually been allowed to go off the grounds when they wish. Life today, Otani said, is better than in any normal rest home.

But socially, the stigma remains. “Patients can travel to London and Rome, but they can’t go back to their hometowns,” said K. Yamaguchi of the Sasakawa Memorial Health Foundation.

Most of the 600 patients at Tamazenseien say they will stay despite the law’s repeal. The government has promised to maintain the leprosariums as nursing homes.

“If this had happened 20 or 30 years ago, we could have started afresh,” said Ko Michihiro, 62, a thin man whose slight facial scars are the only sign of his bout with leprosy. “But now we are old. We don’t have the time or energy to fight the prejudice that awaits us.”

‘No Love, No Love’

Some have managed to find love here, but most express great sadness when they speak of the relationships they have forgone because of their exile.

For Fumie Suzuki, it is talk of children that brings sorrow to her voice. For Kenjiro Toda, 64, a small, delicate man, it is the pain of knowing that six of seven siblings won’t acknowledge he exists.

For Osamu Usami, 70, a stubborn man who peers through thick glasses, it is life without a beloved. Men outnumber women three to one among patients, so few could marry. When asked if he ever had a wife, he pointed to his heart and said wistfully in English pulled from his engineering education 50 years ago, “No love, no love.”

But as patients sat sipping ceremonial sake from cedar cups, they brimmed with thanks for Otani and pondered the meaning of their hard-won freedom.

“I’m so happy,” Toda said. “Nothing has really changed. But psychologically, everything is different now.”