Friday 30 September 2016

Japan: leprosaria, fine art and futuristic architecture

I had a week in Japan, at meetings in Tokyo and Yokohama. In Tokyo I visited the Hansen’s museum and witnessed the tale of the survivors.  I enjoyed the art galleries in Tokyo, Yokohama is a thriving outward looking port.

When I knew I was going to be in Tokyo I contacted Kay Yamaguchi who is a leprosy advocate and human rights activist and asked her to take me to the Hansen’ s museum in Tokyo. We travelled on the Metro to west Tokyo to see the one of the 13 remaining Japanese leprosaria and containing the leprosy museum. ( National Sanatorium Tama Zensho-en The leprosy museum is a new modern building set in a wood. Outside is a sculpture of a leprosy patients and child seeking help, wearing bamboo hats. I chatted to an ex patient, now in his late 80’s, he had come into the leprosaria in the 1950's and had worked making bamboo. He had single facial patch and had later developed facial changes and developed severe deformities after treatment. He described becoming a leader for patient rights and travelling to Europe in the 1980's. He was away that afternoon to be the prize giver at a local school sports day, such is the change in his status from compulsory patient to celebrity. I was touched hearing his tale of struggling to get rights for leprosy patients. The Japanese government acknowledged in 1998 that the Leprosy patients should not have been in the leprosaria and agreed that patients would have life long provision there. They also promised to set up a museum chronicling the history of the museum. The museum has about 10 different sections chronicling different aspects of life in the leprosaria. The leprosaria were established in 1905 when searching for patients were actively searched for and putting  there seems to have peaked in the 1930 but continued until the 19070's.  Patients were detained against their wishes. They were given a uniform and made to work at trades and in the farm. If they got married they were sterilised even though leprosy was known to be an infectious disease. There was also a prison for offenders, the offence was determined by the governor of the leprosaria. The themes of the survival were explored; some patients produced fine art work, there were journals to which that the patients contributed. In the final section there was information about the current state of leprosy in the world. The museum was beautifully put together with nice photos and material. However it is very limited appeal for outsiders because there is very little translation and the curator, although being passionate about his collection he does not speak English. I don't think he appreciated how important it is to make this work accessible. Kay was an impassioned translator, talking about how the patients survived and were v creative.  We then walked through the leprosarium, some of the old bungalows are still inhabited.  The bungalows were single story with verandahs and small gardens. Many of the patients are now geriatric. We visited a ward where people were living in their own rooms, the man here had made ceramics to represent the leprosy patients and of a harmonica band he played in. He had married and left the leprosaria but had now returned because his wife had died. We also visited another former patients leader who is bed bound and frail. There were lots of nurses around and the facility seemed well staffed and provided.  It was a fascinating exploration of the loss of human rights and the fight to preserve their struggle. The leprosarium is also a large building with forest around it. We had lunch in the canteen, bowls of rice and seafood with vegetables and green tea.  I enjoyed the journey out and back with Kay, she speaks good English and has a social scientists’ perspective on life. I felt that I was touching history by seeing the leprosarium and meeting the last patients. They still have 1239 patients in leprosaria across Japan. At the height of the leprosaria there were 12 000 in patients in the 1930's. 

Tokyo felt a very full on city, the bars and neon lights were glaring all night long. I walked around the Akasaka area which has many civic buildings, the law courts, the national theatre, the parliament. These were some of the oldest buildings that I saw and they dated from the 1930’s. This is partly because of the huge earthquake in the 1923 that destroyed the city. I saw that buildings are constantly being torn down and rebuilt in the newest, most modern style.  The national gallery has a fabulous survey of the highlights of Japanese art starting with ancient wooden bhuddas and ancient ceramics, taking in painted screens and calligraphy.  I enjoyed a beautiful exhibition of the painter Suzuki Kiitsu’s work at the Mid Town Gallery. He worked in the late 18c and painted elegant herons, but also sheets of blue morning glory flowers against a gold background. The designer shops in the malls are very elegant, many with beautiful ceramics or designer goods. Simplicity and elegance were evident.

I enjoyed Japanese food and eating small amounts of highly tasty food. I had an excellent meal in a lunchtime spot in Tokyo with highly spiced pickles and vegetables as a starter, followed by grilled mackerel, washed down with miso soup and rounded off with some noodles.  We went to the Tsukiji fish market, the fish are laid out in repeating rows.  I ate seaweed soup and smoked squid. Nora, Vai and Paul and I had an excellent sushi meal here. In Yokohama Nora and I ate beautiful crisp tempura in a simple restaurant. Another restaurant specialised in noodles and one had 8 bowls each containing a small amount of thick udon noodles.

The world pain conference was held in Yokohama in is a vast new gleaming congress centre.  My student Nora had a poster on pain in leprosy patients in Indonesia.  She printed it on silk in London and so it folds up small, tradition meet advanced technology, but I was amused to take silk to Japan. Most of our questioners were surprised that leprosy is still a problem. Later on Andrew Rice gave a talk on our leprosy neuropathic pain work.

In Yokohama I enjoyed the port museum traced the port history from its foundation in the 1860's after the American Commander Perry's visit to its current form as a massive container port.  The material was well explained with good photos. I saw the establishment of the different sea routes. In the 1920's many poor people left Japan to work in the US, then was the era of the huge cruise liners and passenger ships. The port was badly bombed during the war and then occupied by the US forces, in the 1950's the port rebuilt and then adopted container technology.   The exports changed from silk to cars. Port life creates a more open outward looking society and Yokohama has the largest China town outside China.

I enjoyed seeing the modern architecture in Japan but I also felt that the cities were constantly being rebuilt for the sake of it rather than conserving what one has.  I was impressed by the stylish shopping malls with elegant designer shops.

Society is very orderly and pubic transport was excellent.  I felt that with the constant rebuilding and consumption there was little time for reflection. I experienced v little contemplation. I visited one of the main temples in Tokyo the senso-ji temple on Sat and it was very very noisy, only on my early morning visit to a temple the day I left did I experience some spirituality.
On my next visit I hope to visit rural japan and Kyoto to enjoy the rural areas and mountain walks.

After my visit I picked up the book The Samurai’s garden by Gail Tsukiyama. This book is a powerful novel set in 1938  and describing how a young man is suspected of having TB. He is sent to a remote village to recover and here encounters a silent gardener. The gardener rescued a young woman twenty years earlier when she was about to commit suicide on finding that she had leprosy. The gardener takes her to the leprosy village but looks after her. It is a superb coming of age book and the boy learns to appreciate people’s deeper values that go beyond the superficial appearances of leprosy. I had been given the book in 2004 when I visited the US. Reading it now I thoroughly enjoyed the Japanese references to leprosy food, gardens and growing up.  The book had clearly been waiting for my post Japan enthusiasm.

The Samurai’s garden
Gail Tsukiyama
St Martin’s Griffin, New York
1994


Diana Lockwood Nov 2016

Friday 23 September 2016

Beijing 2016 the 19th International Leprosy Congress



New slogans for leprosy and a personal media black out for delegates.
Sept 2016

The International Leprosy Conference is held every 3- 4 yrs. The conference was held in the modern Beijing International conference centre and about 900 Chinese delegates and 500 from other parts of the world attended. This meeting was important to the Chinese leprosy programme and the vice president came to our opening ceremony. There was a parallel conference going on for the Chinese delegates. The slogan for the conference was “Unfinished business”. We were also given very study purple rucksacks to go out and finish the business of leprosy.

This was an important meeting for me presenting research that we have done recently and my group were involved with 17 presentations and one poster. It is also an important opportunity to discuss ongoing leprosy research with others. We also had a meeting of our global consortium to study ENL ENLIST pre meeting. We are making significant progress with this project and it was good to meet up with the group pre-conference. During the conference we had several opportunities to present the data from the ENLIST studies which are being lead by Steve Walker. The new Global Leprosy Strategy was also presented and has three pillars of zero transmission, preventing disability, and promoting inclusion and removing discrimination against leprosy patients. These were then confected into a slogan, “the triple zero” which sounds plausible but actually is unachievable. One of the highlights was a session right at the end of the conference showing how leprosy affected people should be involved in research and planning at all levels. Our group also had an achievement when my recent PhD student Edessa won the prize for the best clinical leprosy poster.

Before the conference started I meet Xiamen, a Chinese leprosy scientist who worked in London with Hazel Dockrell and with whom I travelled to different parts of the leprosy programme in China in 2009, she has now retired. Her son is a well-paid patent lawyer. We went to explore The Hutongs which are crowded areas around the Forbidden City in Beijing, where people lived and worked. They have now been revamped and are full of trendy shops and eateries. We visited a Taoist temple showing an exhibition capturing old Beijing. The drawings illustrated the work of the intellectuals who had lived there, one committed suicide in the Cultural Revolution. The pen and ink drawings captured a past world beautifully. We walked around Huhai Lake where many other people were out enjoying themselves. We took a boat taxi across the lake to the central temple. We paused for supper there, eating at a tiny street restaurant and had cold dishes of vegetables, stuffed buns and pastry wrapped prawns. We climbed up to the temple overlooking the Forbidden City and sat at the top looking over the Forbidden City. It was a fine view but I found it quite disturbing; The Forbidden City looks so separate and excluding and I felt for the peasants who were excluded. It does not surprise me that there was a revolution. As we gazed out over the view waiting for sunset I was hit by jet lag and fell asleep so we took a taxi back to the hotel.

I was in China such a short time that I did not experience enough of the non tourist/ conference side of the country. It seems far more developed than when I visited in 2009. The streets seem much cleaner, fewer bikes around especially in the tourist areas. I sensed that people were not free. I did not spend enough time with anyone to really get a true feeling about the country. I sensed the control of the media, no one was able to access their Gmail accounts and I was not able to access my doctors.net account although I could access my London school (LSHTM, my academic account) one for reading but not sending messages. When I visited in 2000 I linked up with Billy who was running an HIV awareness programme in S China, he was a very helpful way into Chinese society. Similarly when I visited in 2009 travelling with Xiamon gave me local insights.

This was an interesting useful conference, and I enjoyed being in China again. Next time I need to have more time to explore.