Leprosy Patients in Japan Gain Respect

When leprosy patients Tamiichi Tanaka and his wife, Mie, discovered she was pregnant soon after their wedding, they cried with fear and tried to keep her condition a secret. After Mie started to show, however, doctors at the government-run leprosarium here forced her to have an abortion, and sterilized him to make sure it didn’t happen again.

“I can never let go of this memory. I will bring it to heaven with me,” Tanaka, 82, says more than 60 years later, his face and hands disfigured by the disease. “Our one bit of comfort was knowing how much our baby would suffer in such a world.”

Earlier this month, that world finally gave a little bit back when a district court ruled that Japan’s policy of forced isolation for leprosy patients--which lasted until 1996, decades after other countries had stopped the practice--was unconstitutional and a human rights violation. For Japan’s 4,450 remaining leprosarium residents, long cured despite their appearance but still treated as pariahs, the cost has been enormous.

“I finally feel as though I’ve regained my humanity,” Tanaka, one of the original 13 plaintiffs, says in his small living room on the grounds of the Hoshizuka Keiaien leprosarium, where he still lives, too old to make a go of it on the outside. “I can’t express how happy I am.”

The Kumamoto District Court decision, which awarded $14.9 million to 127 former patients in the first of several such cases now before the courts, breaks legal ground in a nation with an extremely conservative judiciary.

It also sheds light on a dark corner of Japanese history marked by incalculable human suffering, widespread bureaucratic bungling and state-led eugenics practices. Breaking down the legacy of prejudice that remains in the policy’s wake, however, represents a far greater challenge in a nation where looking and acting alike have been an integral part of the group culture.

Nor is it clear that the mostly elderly former patients will get the money any time soon. Even if the Health Ministry decides not to appeal--and it will appeal as a matter of course without political intervention--it could be years before the plaintiffs see any money.

But the Kumamoto decision apparently has buoyed others: On Monday, 923 former leprosy patients filed lawsuits against the government. The plaintiffs are seeking a government apology and $934,000 each in compensation.

Leprosy--also called Hansen’s disease, after the scientist who isolated the bacterium in 1873--is actually quite difficult to catch. Japan, with its 126 million people, records only about 10 cases a year nowadays, and most symptoms disappear within a few days after a patient is given a cocktail of drugs.

For centuries, however, the disturbing appearance of people who were left untreated struck terror in most societies. Images of badly disfigured patients crawling on all fours after contracting the disease through open sores or close airborne contact led many cultures to believe it was divine punishment.

A series of new drugs, starting with Promin in 1943, stopped the bacterium in its tracks, however, and by 1960, the World Health Organization was recommending that governments stop isolating leprosy patients. Most nations had followed that advice by the 1970s, and today in the U.S., fewer than 200 elderly patients live voluntarily in long-term care centers in Hawaii and Louisiana.

In Japan, the system stripped patients of their names, families, freedom, dignity and right to reproduce. Separate-but-unequal treatment even extended into the afterlife, with patients denied a place in regular graveyards. Today, an estimated 23,000 canisters of ashes and bones sit on shelves in the nation’s 15 leprosariums.

“Even after death, patients couldn’t go home,” says Satsuki Eda, the leader of a nonpartisan group of lawmakers supporting the patients.

Tanaka was born in 1918 in southern Kyushu island’s Miyazaki prefecture to a prosperous farm family. He did well in school, was good at sports and, in 1939, expected to become an officer in the military before returning to run the farm. An army physical, however, revealed that he had early-stage leprosy.

Entering a Tiny World

Devastated, he stole some money from his father and traveled to nearby Mt. Aso, determined to jump into the volcano and end his pain. It was a beautiful March day, he says, and the snow gleamed in the sun as he sat there for what seemed like an eternity. Finally, nature’s beauty pulled him back from the edge, and he returned home, eventually finding his way to the leprosarium in Kagoshima, also on Kyushu.

As the door to the isolated facility slammed shut behind him, he got his first taste of the tiny world he would inhabit for the next six decades, during which the rest of Japan would experience a humiliating military defeat, a miraculous economic recovery, a couple dozen prime ministers and a banking crisis.

Tanaka was immediately grabbed, stripped and doused with disinfectant. Staff members assigned him a number--4682--and encouraged him to forget about his family. And they forced him to sever ties with his old life by taking a new name, Shigeo Arata, which he kept until a name change this month finally restored his honor.

In the beginning, Tanaka was forced to work up to 18 hours a day tending to elderly patients, responding to their late-night calls for painkillers, massaging their numb limbs and handling their bodies after they died--drudgery the state would later refer to as “skill development.”

The institution confiscated patients’ money and replaced it with coins and bills good only inside the grounds. Tanaka says he thought of escaping but realized he had little chance of surviving on the outside.

Early in 1941, with his symptoms still relatively mild, he met another patient named Mie. Their marriage put him among the lucky few, considering the roughly 4-to-1 ratio of men to women. The state encouraged these unions in the belief that they kept people from escaping, he explains as he brings out a faded brown photograph of a beautiful young Mie in a striking kimono.

The forced abortion the year of their marriage reflected an approach that would be codified in 1948 under Japan’s Eugenic Protection Law, later renamed the Maternal Protection Law, which critics say sought to protect society from infectious diseases by essentially killing off the problem.

Patients say Japan tried to put them away forever and keep them from having children with the hope that they would die off by around 2020, leaving society free of the disease. According to the plaintiffs in the case settled this month, more than 3,000 abortions were performed on leprosy patients.

“There was an entrance but no exit,” says Isao Tateyama, 52 and another of the 13 original plaintiffs in the suit filed in 1998, who were later joined by more than 100 other former patients. “You weren’t ever supposed to leave except by death.”

Several times over the years, the patients staged riots, mostly for better food, more freedom or a bit more respect from some petty administrator. In extreme cases, ringleaders were sent to a maximum-security sanitarium in far-off Gumma prefecture northwest of Tokyo--to a sort of leprosy Alcatraz--from which most never returned.

A series of leprosy landmarks came and went. In 1947, a test in Japan of the foreign miracle drugs determined that they worked on Japanese, and Tokyo even hosted a global leprosy conference in 1958 that aired the latest findings. But a turf battle within the Health Ministry in the early 1960s was won by a powerful doctor who advocated continued segregation, putting Japan on a course that didn’t change in part because of a bureaucratic code against faulting your predecessors.

Finally, in 1995, foreign pressure and embarrassment became so great that Japan vowed to repeal its 1907 Leprosy Prevention Law and related 1953 revisions by the following spring. Three years later, Tanaka, Tateyama and others filed their lawsuit against the government. A team of 100 attorneys volunteered to work for free.

Health Ministry officials argued that they shouldn’t be held responsible because they were charged with carrying out the law, not making it, and they asserted that “eugenics” procedures were conducted with the consent of patients. Furthermore, they said that strict confinement ended in the late 1970s and that therefore Japan’s 20-year statute of limitations should absolve them of blame.

“The law may have lasted until 1996, but they were free to leave earlier,” says Tadao Ishii, a member of the government’s legal team. “We shouldn’t have to compensate them.”

‘It Was a Forced Policy’

Former patients say these arguments are absurd. Abortions were clearly done against their will, they say, and as a practical matter, they couldn’t leave the leprosariums given decades-long government policies that stripped them of even the most basic survival skills.

“Common sense in Japan is not common sense in the rest of the world,” Tateyama says. “Of course it was a forced policy.”

In a small step toward righting decades of injustice, the judge who found in favor of the plaintiffs ascribed blame both to the Health Ministry and to lawmakers for failing to change the law much earlier.

The larger battle now is to start chipping away at society’s prejudice--a direct result of the isolation policy, critics say.

Fujio Otani, a former Health Ministry official who once helped implement the government policy, has spent the past 17 years trying to change public perception.

“It’s difficult,” he says. “And I regret I wasn’t more brave about pushing for change when I was in the ministry.”

Former patients courageous enough to leave institutions--only a few dozen have since 1998--face social isolation and bullying, as do their families. Fumie Onitsuka, 85, is one of those who took the plunge. Since then, neighbors have stopped all contact with the family and pass on any essential town news in notes left under the door. She tries to avoid strangers.

Her daughter-in-law Masae Inoue says she’s used to it. For decades, she and her husband suffered for nothing more than having a leprosy patient in the family. They were forced to move nearly 20 times, and she was repeatedly fired from even low-end jobs.

“I hate society and the government’s policy,” she says. “There’s such fear and ignorance.”

For Tanaka, his joy over the legal victory is tinged with sadness as he watches his wife slip further into dementia. If the settlement were larger--it amounts to between $65,000 and $114,000 per person depending on the degree of suffering, a fraction of the $940,000 they sought--he’d move her to a better hospital.

As he walks from his two-room house to the nearby leprosarium hospital to see her, he points out the site where his wife was forced to abort their child, its original wood structure replaced by a modern clinic.

Along one external wall are several rooms, each with its own door to the outside.

“That’s where you’re put when you’re about to die,” he says. “The outside doors make it easy to pull up the hearse.”

Two buildings over, his wife lies in a fetal position on a futon. He gets her up and feeds her ice cream, her favorite food. His bent, claw-shaped hand touches her hair lovingly.

“She’s been such a good wife,” he says, holding her hand in his. “I just wish I could share this news with her.”

*

Rie Sasaki of The Times’ Tokyo Bureau contributed to this report.