For some in Japan, the spectre of leprosy seems to spark fear, even in the 21st century, more than eight decades after a cure for the disease was developed. The National Hansen’s Disease Museum in Tokyo’s Higashi Murayama City was founded to promote public understanding and de-stigmatize the disease.
The museum’s location is adjacent to the grounds of Tama Zenshoen, one of several sanatoria established across Japan around 1909 after Japan enacted a “Leprosy Prevention Law” in 1907 requiring the quarantine of any person diagnosed with Hansen’s Disease, the modern name for leprosy.
These days, there are fewer than 200 patients being treated at the sanatorium and they have every prospect of being cured. At the same time, a number of elderly former patients deformed by the disease and/or with no place else to go are still living in government-provided housing on the expansive and leafy site. At its peak in 1943, 1,518 patients were being “treated” at Tama Zenshoen. In fact, based on the quarantine requirements of the former law, they were effectively incarcerated, unable to leave even if they wanted to. The facility included schools for children, vegetable gardens, workshops, and dormitories.
Visitors can learn this and much more at the museum. There is an excellent English pamphlet to help guide visitors, but otherwise limited information in English attached to the displays themselves.
The museum’s entry hall contains a chronology of the museum’s development after a group representing Hansen’s Disease patients won a lawsuit against the Ministry of Welfare in which a Japanese court ruled in 1996 that the Leprosy Prevention Law was unconstitutional.
The main museum exhibits are contained on the second floor. The first gallery is a history of Hansen’s Disease in Japan. Victims of the disease were recorded in Japan as early as the 9th century. By the 18th century, many of those ill with Hansen’s Disease were itinerant beggars, often gathered near temples, where they could count on the most sympathy.
At the end of the 19th century, Western missionaries to Japan began to establish hospitals for the treatment of leprosy and an entire wall of this exhibit is devoted to brief histories of these Westerners and their Japanese colleagues.
The next exhibition room contains displays on the lives of the patients of the several national sanatoria. There is a video in which survivors reminisce about their lives during the period that the law was in effect. Perhaps most poignant was a comment by one man about the lack of privacy and the difficulty of ever having time to himself. Another touching comment was by a patient who used to read in the toilet at night, as it was the only room with an electric light after 9 pm.
There is a reproduction of the common room in a men’s dormitory that provides a feel for living conditions. Old photographs and displays of other artifacts also help.
The patients in the facility were required to work, growing their own food and manufacturing certain items. Those who refused to work were severely punished; the exhibition includes a reproduction of the cell in which such individuals were confined.
But there are also displays of how the patients formed a community that emulated life outside the sanatorium. Patients were allowed to intermarry (although reproduction was prohibited, resulting in sterilizations and abortions). They also held festivals and engaged in religious observance, including, of course, funerals for whose claimed by the disease.
Although patients could not have children, there were children in the sanatorium–those brought in having been diagnosed with the disease. The sanatorium had a school to educate those individuals.
The 2015 Japanese movie “An” (English title: Sweet Bean) centers around Tokue, a 76 year old woman who, in the early 21st century, wants a job at sweets shop. Her particular speciality is making an, Japanese-style sweet bean paste, a common sweets filling in Japan. That, and her cheerful, upbeat personality. As the story unfolds, it is revealed that Tokue, whose hands are quite gnarled, is a Hansen’s Disease survivor who still lives at Tama Zenshoen. Viewers learned that she was brought to Tama Zenshoen in her early teens, separated from her family and forced to abandon all her personal possessions, including a pretty blouse her mother had stayed up all night to make for her the night before she had to leave home for the sanatorium.
Although in the movie viewers only meet the elderly Tokue, hearing her tell that story and watching her interact with another Tama Zenshoen resident, her best friend, Yoshiko, shows her “little girl” side. It’s not hard to imagine the fear and loneliness patients brought to the sanatorium as children must have felt.
The movie, directed by Naomi Kawase, with the indomitable Kiki Kirin as Tokue, is well worth watching, as it shows both the beautiful spirit that developed in Tokue in spite of all her hardships, and the ongoing prejudice against Hansen’s Disease victims, even so long after the disease itself is no longer an issue. Much of it was filmed at Tama Zenshoen and in the neighborhood around it. For those who don’t speak Japanese, it is possible to obtain a subtitled version, although when I re-watched it on Netflix last night subtitles were not available.
The next exhibit details the battle by survivors for the repeal of the law and reparations from the government for their incarceration. It was a long, hard battle, taking decades to gain public sympathy and get to the 1996 court decision. It was another five years after that before another court ordered the Ministry to pay reparations to the victims.
Next are exhibits on various occupations pursued by survivors of the disease, as well as a brief survey of eradication and de-stigmatization efforts in other parts of the world. Finally, in a special exhibition room near the library, there was an excellent display of artwork painted by Hansen’s Disease survivors.
To complete your visit, take a stroll around the grounds, much of which is now woodland, including a number of cherry tree-lined avenues. Don’t forget to pay your respects at the Columbarium containing the ashes of victims of the disease (turn right as you leave the museum). Historically, victims were not permitted to be interred in family graves in accordance with Japanese custom, such was the stigma of the disease. Instead, their ashes have been placed here, with the figurative family formed by this close-knit community.
The National Hansen’s Disease Museum is open Tuesday through Sunday, 9:30-16:30. If Monday is a national holiday, the museum is open on Monday and closed the next day. Admission is free of charge.
The museum is a 20 minute walk from JR Shin-Akitsu station or Akitsu station on the Seibu-Ikebukuro line. There is also bus service from JR Shin-Akitsu station as well as Kumegawa Station on the Seibu Shinjuku line and Kiyose Station on the Seibu Ikebukuro line. Get off at “Zensho-en Mae”.
Special thanks to the National Hansen’s Disease Museum for their permission to take photographs inside the museum for purposes of this blog post.
UPDATE ON JUNE 30, 2019: A court in Kumamoto has ordered reparations paid to the families of victims of Hansen’s Disease. See: http://www.asahi.com/ajw/articles/AJ201906290021.html
© 2019 Jigsaw-japan.com and Vicki L. Beyer
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