Islands of Shame
Still Home to Japan's Lepers
In 1907 Japan enacted the Leprosy Prevention Law.
Under this new segregation law, and despite the fact that a cure had been developed and drug therapy could allow leprosy patients to live in society, Japanese authorities forced thousands of patients to be confined in sanatoriums.
Japan's lepers remained quarantined until the law was repealed in 1996.
By 1955, more than 15,000 sufferers had been rounded up, and thousands more would join them until 1996.
For more than 89 years, lepers would have to live a life of imposed deprivation from family ties and humiliation on top of their medical condition. Heavy labor for the able was the rule, as was sterilization for men who wanted to marry and forced abortions for women who became pregnant.
The traditional shame culture of Japan induced most patients to change their family names, so as not to embarrass their relatives, and to accept their fate as imposed by a law violating their human rights. Since allowed to leave the lepers' colonies in 1996, very few have left the sanatoriums, since they have no place to go and no families awaiting their return. Most of the colonies were set up on islands, chosen for the many advantages they offered for segregation.
These islands are still home to the majority of Japan's lepers.
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The pictures of Mr Nambu were taken in December 2002.
Mr Nambu, living on Oshima island, is a patient of this leper colony and granted me access to his world, and allowed me to take photographs.
I met Mr Nambu as I was preparing a story on the last lepers of Japan, and he was one of the few willing to help me. The traditional japanese shame culture being still very present in the older generation, the majority of patients I met were reticent to take part in any kind of project were they could be recognized.
Of the thirteen centers I contacted asking authorisation to visit, take pictures and talk to patients, only three responded: the ones on the islands of Oshima and Nagashima, and the one near Tokyo, which is a national sanatorium and also hosts a museum and the offices of the national association of Hansen's disease patients.
I started by Oshima, then went to Nagashima and on to Tokyo. My intention was to work extensively on this three centers, so I was planing to go back to Oshima and Nagashima islands after Tokyo.
When I arrived at the Tokyo center, the director Dr Aosaki informed me that following the publication by the Japanese Health Ministry of a booklet on Hansen's disease, the national association of patients had decided to bar any photographer, still or video, from taking pictures of the patients nationwide. The reason was that the publication showed very graphical and harsh pictures of lepers, with an obvious lack of respect for the people and their suffering.
Hence I was told that I could not take pictures in the Tokyo center, and I should avoid returning to the islands, as the position of association regarded all the centers, despite the fact that they understood my approach was quite different.
I decided to put together a different photo essay than the one first envisaged, having enough material to present the situation and the reality of being a leper in Japan, in 2003, through the daily life of Mr Nambu.
The pictures presented here are centered around him, a man now well in his eighties, who spent all is life on Oshima island.
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Facts
Nagashima Island. An average center (size,numbers of partients, history, etc...):
Average age of patients: 76 year-old
Youngest: 50 year-old (came as a baby with his parents, both lepers)
Oldest: 96 year-old
513 patients
500 staffers and 13 full-time doctors which makes a 1-1 ratio patients-caretakers.
Each building is named after a flower or a bird.
Until 1985, principal money making activity for able patients: raising pigs and fishing.
Staffers make an average 25% more money when working in a leprosy center than they would if working in an hospital.
Up to 1980, patients were called leper, and the disease called leprosy.
Since 1980, a leper is a Hansen's Disease patient, and leprosy is called Hansen's disease.
Nagashima leper colony was founded in 1940, to replace a center built in the Osaka region after it was destroyed by a typhoon.
One in five patients is blind.
Patients who accepted the setllement offered by the Japanese government received 8 millions Yens each. They are 100% covered (health care, lodging, food, etc...) as long as they live in a center, for as long as they live.
Oshima Island has more than 4000 books on tape for blind patients. The only one reading, the others prefer watching tv.
Out of shame, most patients changed their name, as to not embarass family and friends. They also severed all ties. Hence nobody could or would claim them when they died, and each center has an common ossuary.
Until the mid-1960s, the administration conducted “eugenic operations” on pregnant women diagnozed with leprosy. On May 29 2001, Hideo Shinozaki, head of the Ministry of Health, Labor and Welfare Bureau, admits officially that “eugenic operations” was the euphemism used to refer to forced abortions.
Japanese health officials had evidence since the 1940s that leprosy was rarely contagious and easily treated. Lepers were banished to remote islands until the law was repealed in 1996.
When lepers were forced into a center, they were quarantined for fear of other contagious diseases, stripped of their clothing and money. Standard kimonos and personal effects were issued, and their money replaced by a specially minted one, valid only on the island. The reason: to prevent lepers from escaping. Which would have been in any case highly impossible due to their infirmities and isolation.
A leprosy in Japan is called a National Sanatorium.
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