Leprosy in Japan: The National Hansen's Disease Museum and Tama Zenshoen Sanatorium, Higashi Murayama, Tokyo 国立ハンセン病資料館と多磨全生園療養所 東村山市 東京
by Johannes Schonherr
Japan's National Hansen's Disease Museum in Higashi Murayama City, Tokyo sits on the east side of a widespread compound called the Tama Zenshoen Sanatorium. Their history is closely intertwined, or, let's better say, the museum serves to inform on and to apologize for what went on through most of the history of the Tama Zenshoen Sanatorium and similar places throughout Japan.
Hansen's Disease is named after Gerhard Armauer Hansen, the Norwegian physician who for the first time isolated the bacteria causing it in 1873. Today, Hansen's Disease is the common term for the illness in Japanese (Hansen Byo / ハンセン病) though the disease is by far better known in the rest of the world as leprosy. Raibyo (癩病) is the traditional Japanese name for the illness.
The Tama Zenshoen Sanatorium used to be a leper colony where patients were detained in isolation from all other Japanese for the most part of the 20th century. One of many such colonies in Japan.
Leprosy in Japan
Leprosy has a long history in Japan. It was already mentioned in the Nihon Shoki, the first somewhat realistic account of ancient Japanese history (finished in 720). In 833, a Japanese government document described the disease for the first time as communicable and warned against contact with the infected.
The illness often terribly disfigures infected persons - they can look very scary. Thus, they were forced to live in their own communities, outside the towns and villages and were considered social outcasts. Up to the end of the Edo Era (1603-1868), they could often been seen begging outside the gates of Buddhist temples.
When Japan opened up to the outside world at the beginning of the Meiji Period, Western medical concepts made their way into the country as well. Christian charities as well as Japanese leprosy doctors opened the first leprosy sanatoriums in the 1880's.
The Japanese government however became more and more worried about the contagiousness of the illness and eventually enacted the first Leprosy Prevention Law in 1907, followed by an even stricter version of the law passed in 1931.
Following Western models, people with leprosy were now concentrated in special detention compounds. Doctors were present but there was no cure for the disease yet.
The names of the patients were taken off the Koseki Tohon family register. They ceased to exist.
Once inside a facility, a patient would never see the outside world again. There was severe punishment for escape attempts; detentions centers used their own currency, money that could not be used outside.
Inside the compounds, the lepers had to work for a living and they were allowed to organize their own cultural events, they operated movie houses, they ran schools to teach their children, they played music, they wrote books, they lived their lives - only that they didn't exist anymore for the rest of society.
Couples were allowed to live together but they were sterilized to prevent them from having children.
Over the years, knowledge spread that leprosy was actually not very contagious. One has to live in close proximity to afflicted persons for a long time to get infected. First successful treatment methods were developed in the 1940's but it took until the 1980's until a definite treatment was discovered. From then on, people could really be cured. The damage done by the illness before the cure, however, could not be reversed.
The Leprosy Prevention Law was finally rescinded in 1996, the former Leprosy Detention Centers were turned into sanatoriums, taking care of the people suffering from the lingering effects caused by the illness.
Tama Zenshoen Sanatorium
The Tama Zenshoen Sanatorium was one of the biggest leprosy detention centers in the Kanto region. Following the passing of the 1907 Leprosy Prevention Law, it was opened in 1909.
It is still in operation today, as a sanatorium housing former patients. The people living there do so voluntarily. The sanatorium provides exactly the services they need.
On May 1st 2017, the date of the most recent data available, 176 former patients were still living on the premises of the Tama Zenshoen.
It might be a good idea to take a walk through the sanatorium first before arriving at the museum.
Walking through the Tama Zenshoen Sanatorium
Take the bus from Kumegawa Station on the Seibu Shinjuku Line and get off at the Zenshoen Mae stop.
From there, you can walk through the rather unremarkable gate right into the former leper colony. Former leprosy patients are still living at the facility.
Turn right and walk by the water tower and you will soon arrive at an area with a conglomeration of many small Christian churches and a Buddhist temple. Those were set up during the days when this was a detention center.
Religious groups were very active in those days to spread their message and to convert desperate people into new believers. At the same time, they offered much practical assistance as well as much needed psychological guidance.
Walk on and you will see both abandoned and well restored patient dormitories from the 1920's. Abandoned hospital barracks always look spooky - even more so in a former leper colony.
The best restored former patient building was erected in 1928, by the patients themselves. It's a beautiful example of early Showa Period architecture.
A sign points out that many of the patients living there had very limited eyesight because of their illness. The muddy paths outside the house were very dangerous for them. So, those patients arranged for the stones necessary and laid out a clean pavement around the house.
There are many modern one-story residential houses on the premises of the Zenshoen today, serving as living quarters for disabled former leprosy patients. A hospital complex inside the facility takes care of their most urgent needs.
There is also a shop, a post office and a library inside the Zenshoen. In a way, it's still a world operating on its own.
A group of pine trees marks a former anonymous cemetery where patents were buried without any mark. Their ashes have by now been removed to a small memorial hall.
On your way to the museum, you will also pass by a Shinto shrine erected by the patients in the 1930's.
The artificial hill created inside the compound in the 1930's however has disappeared without a trace. It was erected to give the residents, confined behind a high wall, a view over the adjacent area. On clear days, Mount Fuji, downtown Tokyo and the Okutama Mountains were in view.
The National Hansen's Disease Museum
The museum, opened in its current form in 2008, "was established as part of the national effort to erase the stigma associated with Hansen's disease and to restore the respect of people affected by the disease by building a space for public edification and dissemination of correct information regarding this disease," as its website states.
Admission is free. However, when you enter, you might want to ask at the reception desk for an English language audio guide since there is hardly any English information provided inside the exhibition area. If you want to take photos, ask at the reception desk for a photo permit. It's free but you need to register to receive it.
The first exhibition room gives a general outline of the history of leprosy in Japan. The basic history of the Tama Zenshoen is also detailed, money to be used only inside the facility is on display.
Enter then the real exhibition. Largely grouped by topic, life inside the facility is documented by abundant historical photos and artifacts. Construction work done by the patients, agricultural work done by the patients (they raised many kinds of animals for their own consumption), the school that taught the children inside the facility. Books on display show that the school followed the national curriculum, including English lessons and teaching Geography. The latter might sound like an especially bitter study topic to endure: learning about the features of the world while being confined to a few acres behind a wall in Higashi Murayama.
Paintings created, books written in the facility are on display as is information about international leprosy treatment and anti-leper-stigma campaigns in the days once treatment became available.
A signboard informs about the ever decreasing number of still surviving former leprosy patients in Japan. In all of Japan, about 1,400 former lepers are still alive and residing in sanatoriums.
A world map points out the countries were leprosy is still prevalent and posing a serious problem. In early 2018, India, Nepal and Brazil were marked red.
Flyers inform about events at the museum. From time to time, surviving former leprosy patients talk about their experiences of living in confinement at the Tama Zenshoen of the past to the public.
The Tama Zenshoen and the Hansen's Disease Museum are in about equal distance between Kumegawa Station of the Seibu Shinjuku Line and Kiyose Station on the Seibu Ikebukuro Line.
The Seibu Shinjuku Line starts out at Seibu Shinjuku Station - which is not the same station as Shinjuku Station. It's about a 10 minute walk from Shinjuku Station. Perhaps most convenient would be a transfer from the JR Yamanote Line or the Tokyo Metro Tozai subway line to the Seibu Shinjuku Line at Takadanoba Station.
The Seibu Ikebukuro Line starts out at Ikebukuro Station in Tokyo.
If you want to go to the Tama Zenshoen first, take the Seibu Shinjuku Line to Kumegawa Station, then take the bus bound for Kiyose Station South Exit departing from the North Exit of Kumegawa Station. Get off the bus at the Zenshoen Mae stop right in front of the main gate of Tama Zenshoen. The bus ride takes about 10 minutes and costs 200 yen.
If you want to head straight for the museum, take the Seibu Ikebukuro Line to Kiyose Station, take the bus bound for Kumegawa Station North Exit, departing from the South Exit of Kiyose Station. Get off at the Hansen's Disease Museum stop.
Information on the stops is displayed in English inside the bus. SUICA / PASMO cards are accepted.
Opening times: 9.30 am to 4.30pm, closed on Monday (or Tuesday if the Monday is a public holiday) and the New Year holidays.
Address: 4-1-13 Aoba-cho, Higashi Murayama City, Tokyo
Tel: 042 396 2909