Islands of Shame

Getting some help to get dressed in the morning is also an occasion to catch up on news and gossips.

Physical therapy room in the Nagashima island center.

A statue on a grave on Oshima Island presents a decayed appearance. Some may see it as a touching reminder of the distress and physical pains endured by the patients who were forced onto this island.

An abandoned medical yard doubles now as a storage facility.

A patient in a communal room, Nagashima.

Mrs. Futami took over in 1960 the monthly magazine, Aisei, published for the patients living on Nagashima. Without any background in journalism. The publication, paid by supporters, is printed prison's workshop in Takamatsu (Shikoku Island). The magazine is also sent to subscribers across Japan.

Poster designed to draw the attention of patients to the importance of monitoring themselves for developing medical conditions. The majority of patients in sanatoriums are blind.

This is Japan, and some patient will not have decent meal without a glass, or two, of sake.

Nurse helping a patient to undress before a medical appointment.

A health care worker helps in writing letters and cards. Many patients have lost their sight or ability to write, as Hansen's disease attacks the nervous system extremities.

Mr. Nambu going to deliver a present to a friend.

Getting ready for a walk to go deliver a present to a friend.

A patient, posing for a picture in her hospital room, Nagashima. When it is too difficult for patients to live in their own apartment, they move to a hospital room.

An abandoned classroom on Nagashima. Built when families with children were forced to the sanatorium, they are now used as storage rooms. The then children are now in their 80s and 90s, and most are still leaving on the island.

Mr Nambu, blind, spends a morning every week at the eye clinic, on the island, to be cared for and checked for possible infection.

Mr Nambu, left, chats with an other blind patient, as they wait for the nurses to arrive for a weekly check-up.

A cafeteria attendant waits on Mr Nambu. Always one of the first patients to be up, Mr Nambu takes his breakfast alone.

Patients on the islands have their private appartment, situated in one-story buildings. Mr Nambu put bells in front of his door and along the rails patients use to find their way around. Different tones help them to be situated.

A health care worker accompany Mr Nambu on his way to visit a friend.

Nurses attend to Mr Nambu, during the weekly medical check-up patients undergo as a routine.

Taking care of Mr Nambu's hands. Loss of tactile sensitivity is one of the first effect of Hansen's disease. A fact which greatly complicates the lives of patients by affecting their ability to sense heat, to keep their balance, and to accomplish what would be easy daily routines.

Arrived too early for a morning doctor appointment, Mr Nambu gives a massage to an other blind patient as they wait.

By Luc Novovitch
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.

Mr Nambu, living on Oshima island, is a patient of this leper colony. He 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 authorization 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.

The three that accepted my request did so after I finally decided to play according to the local rules. I ask a friend, Dr. Kazuaki Miyagishima to place some calls for me. Kazuaki is a long-time friend, and supported my project from the beginning. Being the Director of the World Health Organization’s Department of Food Safety and Zoonoses may have helped…

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 planning 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 the 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 the 21^st Century. I centered the presentation on Mr. Nambu’s daily life, representative of the intense medical care that Hansen Disease patients get in Japan.

The pictures presented here are centered around him, a man now well in his eighties, who spent all is life on Oshima island.

I have been multiple times to Japan, my first trip dating back to 1980, and saw how the society is changing. I tried to express some of this gradual transformation through a series, The Japanese 1980-2005, that I posted on http://novopix.com.

Factoids:

Nagashima Island. An average center, in terms of population, size, and so on:

Average age of patients: 76 year-old.
Youngest: 55 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 on average 25% more money when working in a leprosy center than they would if working in an hospital.
Up to 1980, patients were called lepers, 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. Hansen’s Disease attacks first the nerves – eyes, tips of the fingers and toes.
Patients who accepted the settlement 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 4,000 books on tape for blind patients.
Out of shame, most patients forced into these centers changed their name, as to not embarrass 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 diagnosed with leprosy. On May 29 2001, Hideo Shinozaki, head of the Ministry of Health, Labor and Welfare Bureau, admitted 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, worn only by patients of these sanatoriums, 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.
New cases in Japan: 6 or 7 nationals officially reported, and between 12 to 15 foreigners, a year.
A leprosy in Japan is called a National Sanatorium.
New cases worldwide, officially detected and reported by 106 countries average 75,000, mostly in Asia. Several a year in the US. Armadillo may transmit Hansen’s Disease.
On May 11, 2001: a district court in Japan ordered the government to pay the equivalent of US$ 15 millions to 127 plaintiffs who challenged the repressive law that kept them isolated for decades.
On May 23, 2001: Prime Minister Junichiro Koizumi ordered a Government Statement containing a formal apology, and for the first time in Japanese history, the government did not appeal a decision condemning it.