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FOR THE ELIMINATION OF LEPROSY NO.24 (WHO SPECIAL AMBASSADOR'S NEWSLETTER)

 事業名 ハンセン病対策啓発活動
 団体名 笹川保健財団  


BOOK REVIEW
Telling It Like It Was
Book depicts fasting-disappearing way of life at Sungai Buloh
 
Valley of Hope The Sungai Buloh National Leprosy Control Centre
Phang Siew Sia, Wong Chau Yin MCA Subang Division (May 2006)
 
 
 In 1930, a lush valley 25 kilometers from Kuala Lumpur became the largest leprosy colony in the British Commonwealth. Sungai Buloh Settlement (later Leprosarium and now the National Leprosy Control Centre) would eventually be home to as many as 2,400 people affected by the disease.
 For almost four decades, through World War II and the birth of an independent Malaysia, the occupants lived in virtual isolation from the outside world. Managed by a medical superintendent and his staff, with its operations supported by the ablebodied among the residents, the leprosarium had its own rules and regulations, its own currency, school, places of worship, social clubs, fire brigade, police force and even a prison.
 Over time, Sungai Buloh has been transformed. With the implementation of the national leprosy control program in 1969, the emergence of an effective cure for leprosy in the 1980s and the graying of the resident population, a way of life known only to a few is gradually being obliterated. For many outsiders, the name Sungai Buloh has become synonymous with flowers and plants rather than with leprosy, as commercial nurseries thrive there. A general hospital complex serving the surrounding area has also recently opened.
 Valley of Hope sets out to record the story of the settlement while there are still those alive to tell the tale. Its enterprising authors (see below) make clear that this is a story about the leprosarium and its people, not a disease, and their research is largely based on interviews with surviving residents. The book's title is how Sungai Buloh was once known − as a place where people lived in hope of a cure.
 Sungai Buloh was constructed in the wake of the 1926 Leper Enactment Act, which required the segregation and treatment of those with the disease. Given the dire conditions in existing facilities, the idea behind Sungai Buloh was to create a self-contained community where patients could live in humane surroundings while under medical supervision.
 Brought together by a common disease, this community was “a melting pot of different races, cultures, backgrounds, histories, nationalities.” In fact, the population of the leprosarium was dominated by ethnic Chinese, who far outnumbered Malays and Indians, and in pre-independence days there was also a handful of Japanese, Eurasians and Gurkha soldiers under treatment.
 In chapters covering everything from medical care and living arrangements to schooling and social clubs, the authors recount what life was like for young and old, single and married in Sungai Buloh. One of the central figures in the book is a lady they call Saw Cheng, whose life they follow from the time she was admitted as a girl of 14 to when she has become a woman of 82 with failing eyesight and a missing leg.
 Through Saw Cheng, readers are introduced to the admissions procedure, the loneliness and dislocation experienced by new arrivals, the gradual adjustment to Sungai Buloh's routine, the rigors of treatment with dapsone injections, annual tea parties and costume competitions, and the strength of spirit of the now mostly elderly residents. “I have served my time longer than any convict sentenced to life imprisonment,” Saw Cheng tells the authors with no apparent trace of rancor.
 Today there are under 400 inhabitants of Sungai Buloh, ranging in age from their 40s to their 90s. Many are too old or infirm to live elsewhere. Every inch of spare land, it seems, is given over to cultivating flowers, trees and turf. Commercial gardening − a rehabilitation program suggested by a past medical superintendent − has become big business, and is attracting an influx of outsiders and immigrants.
 Fearing that the unique history of Sungai Buloh was disappearing without a proper accounting of it, the authors set about their work. In writing this book, they have constructed an affectionate monument to the people who spent their lives there, even as the buildings they once lived in are slowly crumbling away.
 
Sungai Buloh Internal Currency: This one-dollar note was printed on January 15, 1936.
 
A STORY ABOUT PEOPLE, NOT DISEASE
Co-author Joyce Wong describes how writing Valley of Hope enriched her life.
 
How did you become interested in Sungai Buloh?
 I was born there and brought up nearby. My parents had been patients and moved out after my birth as they were not allowed to raise children within the compound. As I grew older, I came to understand more about the leprosarium and appreciate its unique story.
 
Why write a book?
 I brought Siew Sia, my co-author, to the leprosarium in 2002 and briefed her on its past. She was fascinated by the beauty of the place and impressed by the history, and suggested we start a project to preserve its story. At first, we just planned to do a brief write-up and collect some photos. As we worked on, the materials as well as our sentimental attachment to the leprosarium grew and we decided to do a book.
 
How did you go about your research?
 Since we could find very little documentation on the leprosarium's history, most of our research was based on interviews with residents, ex-residents and their families, observing the daily routine and studying old photos. We had a lot of interaction with the residents. In fact, most of our weekends during the two years of our research were spent in Sungai Buloh.
 
What makes Sungai Buloh special?
 Sungai Buloh is a one-of-a-kind place, probably in the whole world. Very seldom can we find such a well-organized, self-sufficient community that has been isolated from the outside world for several decades. The institutionalized lifestyle has had such a strong influence on the community's culture and habits. It's a repository of stories of patients who have struggled to live through both the physical and psychological sufferings caused by leprosy. As such, it is a very important part of the history of leprosy in this country as well as the world.
 
What did you know about leprosy as a child?
 I didn't know much since my parents hardly told us anything about it and didn't want us to talk about it in public. It wasn't until I started to go to school that I realized how different the outside world was from the place that I grew up. Then I started to hear from classmates and teachers that leprosy was a dreadful disease and that patients were kept isolated for fear of infection. But I knew it wasn't infectious as I used to hang around the leprosarium and never heard of any cases of healthy people or children getting the disease from another patient. I also knew it can cause deformities and long-term suffering, as in the case of foot ulcers. But for outsiders like my classmates, who had never seen a leprosy patient, it would have been hard for them not to be fearful. Leprosy is an often misunderstood disease.
 
Has the experience of writing this book changed you?
 The most precious thing Siew Sia and I gained from writing Valley of Hope is our friendship with a group of elderly residents. Through them, we learned to count our blessings. By helping them out in small ways, such as making phone calls and writing letters, we experienced the joy of giving and how lucky it is to be the giver. In fact, we still visit them very often and take other friends with us. Personally, I found my life became much more meaningful during the three years spent on the research and writing, even though I had to sacrifice a lot of my time and energy. I look at life from a different perspective now. This project has also opened the door for me to explore more of myself and to embark on activities that are spiritually fulfilling.I think I can say the same for Siew Sia, too.
 
What should the legacy of Sungai Buloh be?
 The story of its people. There is a lot to be learned from them. It still amazes me to see how strong some of the older residents are, how they are able to live independently in spite of their physical condition. Some of them are without hands and legs, some are blind. They have been deprived of the basics in life that we take for granted and yet they live their lives with dignity, without complaining.
 But it's sad to note how tremendously this place has changed. The older generation that is the “trademark” of Sungai Buloh is slowly fading away. There is an influx of outsiders. Some of them have created a lot of social problems. The older residents who are so defenseless are left at the mercy of these people. We hope that more care and attention can be given to these old folks.
 
 Co-authors Joyce Wong (standing, second from left) and Siew Sia (standing, far right) visit the elderly residents with some of their friends.
 
 
 
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集計期間:成果物公開〜現在
更新日: 2019年10月19日

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