A project by Tan Ean Nee/ Sungai Buloh Settlement Council 

我们梦想把双溪毛糯麻疯病院打造成一座历史文化园区，让曾经的滥觞滋润这片土地，开出灿烂艳丽的花朵，让我们的后代有机会悠游于这片花海，欣赏美丽的古迹和文化。

这个梦想，就先从创设故事馆开始，成就全世界最大的内陆麻疯病院文化园区，并期许日后将园区申办为世界文化遗产。我们需要您的支持，您就是我们要找的真英雄！

Our dream is to turn the Sungai Buloh Settlement into a historical and cultural park, and let the rich history that lies behind it nurture and revive the community like beautiful flowers in bloom again, for our next generations to enjoy and appreciate the heritage and history of this place.

The first step towards this dream is to establish a story museum, as part of our effort to make it the world’s largest inland leprosarium cultural park, with the hope that it will one day become a UNESCO world heritage site.

We need your support, and you are the hero that we are looking for!

1. 保留文化遗产：故事馆是记录、收藏和展览麻疯病院社区集体记忆的平台。院民的生命历程和生存见证是无形的文化遗产，而结合居住、管理和治疗的病院社区，反映出当代的“开明政策”，其自供自足的生活方式体现了丰富的人文、社会和经济意义，是人类文明发展史上重要的进展和模式。
To preserve cultural heritage: the story museum is a platform for documenting, storing and exhibiting the collective memory of the Sungai Buloh Settlement community. The life journeys and living testaments of the patients are important intangible cultural assets, and the community for the leprosy patients, one which integrate elements of living, management and treatment, reflects the “enlightened policy” implemented back then, the self-sufficient model demonstrated rich humanitarian, societal and economical significance, which mark crucial milestones in the history of human development.

2. 消除偏见与歧视：本馆力图普及社会对麻疯病患的认识，了解康复者和家人集体被隔离的情感世界，恢复他们的名誉。通过启发教育消除偏见与歧视，让后人珍惜病患对医疗的贡献与付出，最终实现麻疯病群体与社会的共生。
To eliminate bias and discrimination: the story museum aims to enhance the publics’ understanding of the leprosy patients, empathize with ex-patients and their family members in their inner feelings over the forced segregation, and restore their reputation. It hopes to eliminate bias and discrimination through inspirational education and promote appreciation for the role of modern medicine, and ultimately integrate the leprosy community with the wider society.

3. 鼓励后代寻根：本馆将以文字和影像还原院区的生活疯貌，让康复者后代得以寻根，了解祖辈在此的生命历程。
To encourage the next generations to trace family roots: the story museum will re-present the lives of the leprosy patients at the leprosarium, for the next generations to trace family roots and understand the life journeys of their ancestors there.

故事馆将设于双溪毛糯麻疯病院参议会礼堂一楼，由古迹保存专家张集强率领 UCSI 建筑系41位学生构图、制作模型以及设计展览室的摆设，橱柜展板灯光等。
The story museum will be located on the first floor of Dewan Orang Ramai Sungai Buloh, and its construction will be led by a heritage specialist, Mr. Teoh Chee Keong with the assistance of 41 architecture students from UCSI, including the initial drawings, model construction and the composition of the display rooms as well as the display and picture lighting.

故事馆预计分为展示厅和影像厅。展示厅以“隔离的岁月”，“院内的生活”，以及“生存的见证”作为主线，展出文字记录、重要文献，以及院民捐出的老照片和个人文物。影像厅则播放麻疯病康复者及其他相关人士的口述录影。
The story museum will be divided into an exhibition hall and an audio-visual hall. The exhibition hall focuses on displaying lives under the segregation policy, lifestyles at the leprosarium and living testaments of the patients – written records, important references, old photographs and personal items will be exhibited. The audio-visual hall will play interview recordings of the ex-patients and other relevant persons. 

征求支持RM1000或以上的真英雄，在故事馆开幕当日种下2440朵花，向2440名曾经奉献他们的身体作活体实验，促成麻疯病特效药问世的生命勇士致敬！
To find heroes who are able to contribute the sum of RM1000 or above, and ceremonially plant 2440 flowers on the day of the story museum’s opening, as a gesture of respect to the 2440 patients who once lived at the Sungai Buloh Settlement and who had contributed their lives for medical research to find cures for leprosy, leading to the discovery of an effective course of treatment. 

第一阶段的筹款目标为50万令吉，作为口述历史作品展，拍摄短片，推动保留院区古迹与麻疯病史的教育醒觉运动，故事采集编写，文字图像编辑与制作以及建筑扩建经费。
Our fund raising target for the first phase is RM500.000, which will be utilized to cover the cost of preliminary activities and events like holding exhibits of the inmates’ stories, producing short films; conducting heritage preservation and leprosy awareness campaigns; text and visual editorials and production, and also for the building construction fund of the story museum. 

所有支持款项将存入双溪毛糯参议会户口由参议会理事执行和监督计划
All supported funds will be channelled to the Sungai Buloh Settlement Council’s account and the Council members will be implementing and monitoring the project.

没有麻疯病特效药的年代
A look back at the era when no cure existed for leprosy

马来亚在英殖民时代制定了《1926年麻疯病患法令》，授权警方逮捕麻疯病人，将他们关进麻疯病营或收容所。法令也阐明，任何会接触到食物、饮料、衣物或身体的行业不得雇用麻疯病人，包括厨师、屠夫、理发师、裁缝、家佣、护士及车夫。
The Leper Enactment Act 1926 was enacted in Malaya under the British rule, which gave authority to police to arrest leprosy patients and keep them in quarantine camps or shelters. It also prohibited leprosy patients from taking personnel in sectors involving food, beverages, clothing or body contact, including employments as cooks, butchers, barbers, tailors, domestic helpers, nurses and drivers. 

隔离政策导致主流社会对麻疯病产生极大的恐惧。这些病人失去了基本的人权，他们和家人遭遇到无数令人痛心的误解、歧视和不平的对待。
The segregation policy instilled much fear and panic in mainstream society. As a result, the patients were deprived of basic human rights, and they and their family members had to face a number of ruthless misunderstanding, discrimination and unfair treatments. 

建立于1930年的双溪毛糯麻疯病院，因坐落于葱郁的山林间，也称为“希望之谷”。
The Sungai Buloh Settlement was established in 1930, and was also known as the “Valley of Hope” as it sits nestled amid the green valleys and misty mountains.

早期病院收留国内各族以及来自印尼、新加坡的病患，也有来自尼泊尔的雇佣军、日本人和欧洲人。高峰时期这里住着2440个病患——它是全世界最大的内陆麻疯病院。
During its initial stage, the leprosarium accepted patients of all races in the country and also patients from Indonesia and Singapore. There were also several Nepalese mercenary soldiers, Japanese and Europeans who sought treatment there. At its peak, the leprosarium accommodated 2440 patients, making it the world’s largest inland leprosarium.

隔离期间，院内事物皆由病患承担，包括行政、保安、清洁、食物配给，洗衣、裁缝、木工、打理农场等，甚至可受训为护士助理。他们有自己的社会规则、内部流通的钱币、还有学校、礼堂、诊所、安老院、宗教场所、监狱、义山，社区俱乐部和会馆组织，甚至有警察和消防队伍！由病人成立的理事会“双溪毛糯参议会”(Sungai Buloh Settlement Council)，营运至今。
During the segregation period, the leprosarium was operated by the patients for themselves, including administration, security, cleaning, food distribution, laundry, tailoring, carpentry, managing the farms, and some patients were even trained to become nursing assistants. There were distinct set of social rules, its own currency, and it was complete with a school, a common hall, clinics, an old folks home, religious sites, a prison, a cemetery, social clubs and associations, and even its own police and fire commission! The Sungai Buloh Settlement Council was formed among the patients, which is still in operation up to this date. 

隔离期间，病患可自由恋爱、结婚生子。然而，为了保护后代不受传染，院方禁止病患在院区内抚养子女。孩子一出世，病患就得忍痛将孩子送到慈善机构，甚至签署“放弃孩子抚养权协议书”，把孩子送给陌生人领养。在此出生的一千多名孩子，从此与父母分隔离散。今天，双溪毛糯许多年迈的父亲和母亲，还在思念那年来不及多看一眼的孩子，期盼着团圆的奇迹。
During the segregation period, the patients maintained the freedom to fall in love and marry each other. However, to prevent potential transmission of the disease to their children, the patients were not allowed to raise their children at the leprosarium. Immediately after birth, the patients were mandatorily required to send their children away to charitable organizations, and had to sign consent letters to give up their parental rights for third party adoption. A thousand over babies were born here and separated from their parents since birth. 

在没有特效药的年代，病患被迫以身躯试验各种疗法，包括食用院区内的大枫子树果实、注射果实提炼成的油以及其他药物。他们默默承受各种后遗症——头昏、呕吐、昏迷、注射处红肿发脓疼痛、发烧、甚至药物进入体内后犹如烈火灼伤的痛苦，终于让药物研发有所突破。
In the absence of effective cures, patients had to spare their lives and go through different clinical trials, including consuming fruits from the Chaulmoogra trees planted around the leprosarium, receiving injection of oils extracted from the Chaulmoogra fruits and also other types of medication. They were suffering in silence from various side effects caused by these trial therapies – nausea, vomiting, dizziness, injection site soreness and pus formation, fever and burning pain after injection, just to name a few, which eventually led to a positive breakthrough in the search for an effective treatment.

1948年，全球第一代麻疯病药物氨苯口（Dapsone）面世，但须服食至少20年。
In 1948, the world’s first generation medication used to treat leprosy, Dapsone, was introduced but however, the course of treatment would need to last at least 20 years.

1964年，双溪毛糯医疗团队发现了世界第一宗氨苯口人体排斥病例，把麻疯病特效药的研究推进一大步。
In 1964, the Sungai Buloh medical team discovered the first Dapsone-resistant case in the human body, which triggered further research in this field.

1982年，麻疯病特效药综合性药物治疗（MDT） 获得全面采用，麻疯病正式受到控制。
In 1982, a multi-drug therapy (MDT) was introduced and prescribed to leprosy patients which effectively controlled and eliminated the disease. 

目前，院内只剩160位康复者。
They are currently 160 ex-patients living on site.

他们是疗养院的建设者——他们参与麻疯病院的建设，成就了马来西亚最早兼具社区概念与现代医疗管理的疗养院。
They were the creators, as they took part in the construction of the leprosarium, making it the earliest community-based institution with modern medical facilities in Malaysia.

他们是土地的开拓者——他们开垦荒地，栽植花树转售，让双溪毛糯成为花卉批发重镇。
They were the pioneers, as they developed uncultivated lands, planted flowers and trees to make a living, making Sungai Buloh a hub for plants and flowers.

他们是家庭的守护者——他们付出人身自由，让原生家庭不受污名，又送走孩子，维护下一代的健康。
They are protectors of their own families, as they gave up their liberty so as not to stain the name of their original families. They sent their children away to ensure the health of their next generations.

他们是药物研发的奉献者——他们奉献了受病菌蚕食的身躯，完整了世界麻疯病治疗体系，让后人免于麻疯病之苦。
They were the contributors to modern medicine, as they submitted themselves for medical research, which led to worldwide development of medical treatments for leprosy, saving future generations from suffering the same fate.

他们是生命的勇者，是山谷里的真英雄。
They are brave survivors and heroes hidden in the Valley of Hope. 

然而，英雄正在凋零。我们必须与时间赛跑。
Yet, as these survivors are getting on in years, we must all compete against time.

我们要在双溪毛糯病院内创设故事馆，记录他们的奋斗史。当他们离开后，这里将是他们后代寻根怀旧的家，也是新生代听故事的地方。
We would like to establish a story museum at the Sungai Buloh Settlement, documenting the patients’ history of fighting against the disease. After they pass on, this will be the place for their next generation to trace their roots, and a place for new generations to hear the tales of the Valley of Hope.

我们要把山谷里2440个英雄的名字找出来，为每人种下一朵花，感谢他们的无私地奉献。
We endeavour to identify the names of all the 2440 heroes who once lived here, and plant a flower in their names, to show our appreciation of their selfless contribution.

我们要把这里打造成结合历史、古迹、花卉、休闲的文化园区，并期许将这珍贵的人文遗产带到国际视野，申办成为世界文化遗产。
We would like to create a cultural park combining history, heritage, flowers and plants and recreation, with the aim of taking this cultural legacy to the international arena, and seeking to have the place listed as a UNESCO world heritage site. 

Jul-Dec 2016

-口述历史工作队进行内容采集与前期制作
-展览：USCI 建筑系学生展出故事馆的图测和3D模型
-故事馆集资计划宣传活动
-收集参议会与院方意见，制定故事馆的最终设计和筹建方案
-定期古迹导览活动
- Content collection and preliminary works by the oral history team
- Exhibition of the initial drawings and 3D models for the story museum by the USCI architecture students
- Crowdfunding promotional activities
- Collating views from the Sungai Buloh Settlement Council and the Sungai Buloh Hospital, finalizing the design and construction plans for the story museum
- Regular heritage tours

Dec 2016 - Mar 2017

-故事馆内容后期制作
-平面专题报道同步上载回家网络文物馆
-民众会堂一楼扩建计划开展
-定期古迹导览活动
- Post production for the story museum
- Feature reports on print media and the online museum
- The construction of the story museum begins
- Regular heritage tours

Mar- Jun 2017

-文物文献征集，归类与建档
-安置馆内橱柜、展板、灯光，影音设备等等
-制作馆内展示品
-定期古迹导览活动
- Artifacts and references collection, categorization and archives
- Installing cabinets, exhibition boards, lighting and audio-visual equipment
- Regular heritage tours
- Production of display items
- Regular heritage tours

Jun - Aug 2017

-设计外围景观
-定期古迹导览活动
- The design of the story museum’s surroundings
- Regular heritage tours

15 August 2017

-故事馆开幕
-定期古迹导览活动
- The opening of the story museum
- Regular heritage tours 

十年前，我以记者的身份，第一次接触双溪毛糯病院院民，内心受到强大的撼动。
​Ten years ago, when I was a still a journalist then, I had the opportunity to get to know the patients of the Sungai Buloh Settlement and was deeply moved by their stories. 

2007年，政府拟拆毁病院东区内的建筑群，我和同伴黄义忠拍摄了纪录片《永远的希望之谷》，记录官方和院民在古迹保存过程中所展开的拉锯战。
​In 2007, when the government was planning to demolish certain clusters of buildings located at the east section of the leprosarium, Joshua Wong and I shot a documentary entitled “the Everlasting Valley of Hope”, depicting the tug of war between the government and the patients in preserving the Valley of Hope. 

2010年，我和黄义忠用两年时间，走遍全马麻疯病院作实地考察后，出版了《回家》，内容围绕在麻疯病患被逼与孩子分离的无奈经历，以及两代人的内心感受。
​In 2010, Joshua Wong and I, after spending two years making field trips to various leprosy sites across the country, published “The Way Home”, illustrating the sad tales of separation between the patients and their children and the emotions of the two generations. 

《回家》出版后，我展开全马各校巡回分享，让大众了解麻疯病议题。
After the publication of “The Way Home”, I began a tour across the country to share my experience for the public to better understand issues revolving leprosy.

2011年10月，我和好友林美金及黄晶洁组织了双溪毛糯口述历史工作队，采集院民故事、收集老照片和个人文物，并将文献资料数码化，催生了《回家》网站兼双溪毛糯网络文物馆(www.thewayhome.my）。
​In October 2011, I formed an oral history team together with my good friends, Lim Mei Kim and Linda Wong, to focus on collecting stories of the patients, old photographs and personal items, and convert references and documents into digital form, and thereafter, an online museum at www.thewayhome.my was established. 

2012年，英文版《回家》出版。来自纽西兰、澳洲、日本等的海外后代陆续托我寻亲。骨肉团圆的感人一刻，一再让我确定，寻找爱，就是我们这些年工作的所有意义。
​In 2012, the English version of “The Way Home” was published. The next generation of  ex-leprosy patients from New Zealand, Australia, Japan and others, gradually engaged me to trace their family members. The touching moments of reunion assured me that what we have been doing all along is meaningful.

2014年，我和康复者后代Noraeni合着了马来书《相遇于坟场》（Pertemuan di Pusara），记载她与华裔生母在义山坟前“相认”的故事。同一时期，记录后代寻根的纪录片《双溪毛糯的孩子》（Anak-anak Sungai Buloh）也诞生了。
​In 2014, Noraeni, who is a descendent of ex-leprosy patients and I co-authored a book “Pertemuan di Pusara”, which set out the story of her reunion with her Chinese biological mother at her graveyard. At the same time, a documentary entitled “Anak-anak Sungai Buloh” came to life.

2014年，后代寻亲纪录片《疯的传人》出炉；英文版《相遇于坟场》（Reunion at the Graveyard）也出版了。成功找到亲人的澳洲籍妇女Tracey Collier专程回来出席新书推介礼。
In 2014, another documentary entitled “Descendants of the Wind” was completed, and the book “Reunion at the Graveyard” was also published. Tracy Collier, an Australian who successfully found her relatives came to Malaysia to attend the book launch. 

英文书推介礼两个月之后，分开了50年姐妹Esther和Nurul 也成功相认了。我们全程记录了这对姐妹重遇的故事，并于2016年4月推出纪录片 《SISTERS》。
​Two months after the book launch, Esther and Nurul who are two sisters who had been separated for 50 years found each other, and the documentary entitled “Sisters”, which was published in April 2016 recounted their story. 

2015年8月15日，配合双溪毛糯麻疯病院85周年，《希望之谷历史图录》出版，通过老照片让读者体会到这座全世界最大、最现代化的内陆麻疯病院，所积累的价值与重量。
​On 15 August 2015, in commemoration of the leprosarium’s 85th anniversary, “The Valley of Hope, Pictorial History Book” was published, and through old photographs, readers had a better sense of the value and importance of the world’s largest and most modern inland leprosarium. 

2016年1月，我受邀到台北参加“亚洲汉生聚落保存串联行动——马来西亚双溪毛糯。台湾乐生疗养院。日本大岛青松园之世界的记忆。生活的风景”座谈会。
In January 2016, I was invited to attend a seminar in Taipei relating to the preservation of leprosarium in Malaysia, Taiwan and Japan.

2015年2月，我和写作伙伴Noraeni Mohamed 和她的女儿Nadzirah受邀到日本展开巡回演讲。同年10月，带着院民后代Esther和Nurul到日本分享她们在茫茫人海中找到彼此的感人故事。
In February 2015, Noraeni Mohamed, her daughter and I were invited to Japan to tour around the country, to share our experience. In October 2015, I brought Esther and Nurul to Japan to share their story of reuniting with each other after a long separation.

2015年11月，为了加强院方对文化古迹保存与人文关怀，我邀请UCSI 建筑系讲师张集强和谢林霖到国家麻疯病控制中心呈现他与学生在十八丁如何将位于角头间的老屋改造公共空间的社区营造计划。院方对于学生的创意和老建筑改造再利用的价值给予高度肯定。于是同意让UCSI 大学与参议会一起合作，维修和改造院内由参议会全权管理的民众会堂。USCI大学决定领养我们的计划，帮我们设计故事馆的图面与模型。这是我们第一次跟学术机构合作，借用大专学府的资源，人力，创意与建筑构思，一起创设双溪毛糯未来的故事馆。
In November 2015 , in order to strengthen the heritage preservation and humanitarian work, I invited UCSI’s lecturer Teoh Chee Keong and Chia Lin Lin to present their community service project at Sepetang, Perak. The hospital authorities were very impressed with their creativity and how they restored and reused the heritage. The hospital authority then agreed to let UCSI University and the Council to work together to repair and transform our Community Hall. USCI University then decided to adopt our project and help us to design and convert our Hall into a Story Museum. This is the first time that we are working with a University, to use their students’ resources, manpower and creativity; and architectural ideas to help us design our future museum.

2016年3月，学生在UCSI 大学的SABE 展览馆展出他们第一阶段的作品，主题为“疾病。地方。人们”。参议会理事丘家发、Haji Abdul Rauf Bin Ibrahim和我以及国家麻风病控制中心的医生Dr Radhiah Mustafar受邀出席这个展览的推介礼。
​In March 2016, an exhibition was held at the SABE Gallery, USCI University. The theme of the exhibition was " Disease. Place & People. " The representative of the Council Mr. Khoo Kah Fah, Mr. Rauf and Dr Radhiah, the Deputy Director of National Leprosy Control Centre, and myself were invited to attend the launching ceremony of their exhibition.

2016年4月开始，故事馆计划得到一群志同道合的朋友如李观发、纪展雄、李秋蓉、赖贵棠，林美金、黄晶洁、陈慧思、黄子珊、连翎翔、林福南、陈婵菁、夏学理教授、陈亚才，邹松林，妙赞法师等的全力支持。他们热心的通过各种管道帮我们作宣传，带动古迹导览活动，采集院民的口述历史、提供筹资渠道等，协助我们圆梦。
​In April 2016, this project attracted a group of like-minded friends, namely, Mr Desmond Lee,  Mr Andrew Kee, Ms Lee Chew Yong, Mr Sik Yin Kiat, Mr Tony Lai, Ms Lim Mei Kim, Ms Linda Wong, Ms Chan Wei See, Ms Wong San San, Mr Lian Lin Siong, Mr Loke Yek Mang, Mr Lim Hock Lam, Ms Joyce Tang Siam Cheng, Professor Hsia Hsueh-Li, Mr Tang Ah Chai, Mr Chow Song Ling, and Ven. Miao Zan to support this project. They helped me through various channels to publicize this project by conducting heritage tours, collecting oral histories from the residents, providing funding channels to help me realize my dream.

2016年7月22日，“抢救希望之谷支援小组”成员张集强、傅向红、陈亚才和我，以及雪州士拉央市议员霍韦彣与国家文物局开会，商讨抢救及维护希望之谷—双溪毛糯麻风病院社区。文化局表明了文物局维护希望之谷的明确意愿，并且已经着手进行指定希望之谷为国家文化遗产的程序。文物局也在收集更完整的资料，以便申请世界文化遗产。
​On July 22, 2016, members from the Save the Valley of Hope Solidarity Group, namely Teoh Chee Keong, Dr Por Heong Hong, Mr Tang Ah Chai and myself, and Mr Fok Wai Mun, Selayang Municipal Councillor, had a meeting with the Heritage Department’s officers at their office.  The Heritage Department showed a strong willingness to preserve the Sungai Buloh settlement as a National Heritage and they have already started to work towards the mission. The Heritage Department also wish compile more supporting material to nominate Sungai Buloh Settlement as a World Heritage Site.      

谢谢您腾出时间看完这篇计划报告。

期待您的加入，成为我们的真英雄！

Thank you for your time to read this project proposal,

We look forward to your joining us and become one of our heroes！