MALAYSIANS KINI The Sungai Buloh leprosy settlement has long closed its doors to new ‘residents’ who suffer from what was once believed to be an incurable disease.

Located 25.6km from Kuala Lumpur, the second largest settlement of its kind in the world was officially opened by the British colonials on Aug 16, 1930.

Its main function was to enforce a centralised forced segregation policy as outlined under the British’s Leper Enactment Act 1926.

Patients during that era were segregated and confined to numerous leprosaria (leper asylums) scattered round the country - the Sungai Buloh settlement being one of them. The oldest was located on Pulau Jerejak, Penang, in operations since 1871.

At the height of its operations, there were 2,440 residents seeking treatment from the Sungai Buloh settlement, which eventually became known as the National Leprosy Control Centre in 1969, and placed under the administration of the Health Ministry.

Today, there are only 138 survivors left in the settlement, living either in single-storey run-down brick houses, or within the confines of hospital wards.

The area, now better known for the nurseries operated by former patients, is also described as the “Valley of Hope”.

Former journalist Tan Ean Nee is on a mission to rescue their memories and preserve it for the knowledge of future generations.

Tan, to date, has published five books and four documentaries on the people whom she first met while on an assignment in 2006 as a broadcast journalist for a government-owned channel. But she also believes there is more that can still be done.

Tan told Malaysiakini in a recent interview that online crowd funding is just one of the ways she is raising RM500,000 for her latest project, dubbed ‘You Are The Heroes’ - to establish a "story museum" at what used to be the settlement’s community hall.

This is Tan’s story in her own words:

THE FIRST TIME I STEPPED FOOT IN THIS SETTLEMENT WAS IN 2006 AS A REPORTER. I came to do an investigative report… In 2007 I produced a documentary when the government started to demolish some old chalets in the east section to make way for a Mara project.

After that I stayed here to listen to the old folks. I was deeply touched by their stories. I published a book titled ‘The Way Home’ to document the isolated nature of the former leprosy patients and their separation from their children.

After that, I felt we could do more to preserve the collective memory of the settlement and so we established an online museum to preserve the history of the settlement. That was how I started my project here.

I ALWAYS FEEL LIKE TIME IS TICKING. I need to quickly rescue their histories which would otherwise be buried when they pass on. I really hope that we can rescue as many memories as we can, while they are still alive.

IT IS NOT LIKE A ONE-TIME INTERVIEW. You need to develop a relationship to collect the oral histories. When he or she trusts you, then you can build a bridge and collect the histories.

OUR DREAM IS TO TURN THE SUNGAI BULOH LEPROSY SETTLEMENT AREA INTO A HISTORICAL AND CULTURAL PARK. This is to keep alive the residents’ collective memory. So the dream is to establish a story museum whereby we can display the artefacts donated by residents here, and also important documents, as well as their handicraft.

On top of that there will be an audio visual hall to screen the life history of the residents here.

Based on what we learnt from the old folks here, they carried out different kinds of jobs…They were not allowed to mingle with mainstream society and so they must live independently in this valley. They made great contributions and developed a rich history.

THE MAJORITY OF PATIENTS HERE CAME FROM THE FORMER SETAPAK LEPROSY CAMP IN 1930. When the Pulau Jerejak camp closed down in 1969, a total of 317 patients was transferred here. There were also patients from Tampoi, Johor.

The majority of patients here is Chinese because in the olden days, the British government segregated the Malay patients to Pulau Pangkor Laut, off Pulau Pangkor, Perak. I (also) think that the Malay community is more accepting of these patients, compared to the Chinese community.

DUE TO THE SOCIAL STIGMA, MANY CHINESE PATIENTS WHO HAVE RECOVERED DECIDED TO STAY HERE. Some of them have been reconnected with their family members, but they decided to stay because they already feel free and comfortable living here. (In Chinese culture), there were a few legends about this disease… and (fears) that it was hereditary… So they felt varying degrees of discrimination and prejudice.

THIS PROJECT IS NAMED ‘YOU ARE THE HERO'. This is because I believe they have made a great contribution to medical research. They contributed their bodies for various tests and experiments to find a cure for leprosy.

In 1982, it was found that leprosy was not an incurable disease. In fact, in 1948 we had already found dapsone (a type of drug) used to treat leprosy. In 1964, our research unit also found the first dapsone resistant case in the world… So they became very famous.

We chose ‘You Are The Hero’ because we want to appreciate the medical experiences of this batch of leprosy survivors. Because they have a very strong will to live.

The other part is that they had to make sacrifices like sending their children out for adoption.

THE RESIDENTS WERE NOT ALLOWED TO RAISE THEIR CHILDREN IN THE SETTLEMENT. Only some of the children (still) know their parents because they were sent to a particular welfare home, with the knowledge of their parents. For those who were put up for legal adoption by complete strangers, it is very hard to trace their whereabouts.

MY SECOND BOOK, 'REUNION AT THE GRAVEYARD', IS ABOUT A CHINESE DESCENDANT WHO WAS CONVERTED TO ISLAM AS A CHILD. When she found out her roots were in Sungai Buloh, she came back to search for them.

Through our help, based on old records, we found out that her mother was buried at the cemetery here. So we helped her to find her mum’s grave and finally she was ‘reunited’ with her mother.

This descendant was very proud of her roots; she brought her children and grandson to visit their grandmother and great-grandmother’s grave. That was very touching. I wrote the book based on her search.

The appendix has a record of all the descendants who came back to search for their roots, including a lawyer from Australia, one from New Zealand, and also others who were sent out for adoption.

THE VALLEY OF HOPE PICTORIAL STORYBOOK DOCUMENTS THE LIFE HISTORIES OF THE RESIDENTS. It is divided into a few chapters, from their medical care, education, associations and others.

When you read this whole book you will understand how they lived their lives in the leprosy area and also the testimonies from residents here. There are a lot of old pictures from the 1930s up to today.

I THINK THE NATIONAL HERITAGE DEPARTMENT SHOULD ALSO PLAY ITS PART IN PRESERVING THIS AREA. I think it has made a strong commitment to gazette this place as a heritage site very soon.

Our last meeting with the department was on July 22 and it stated there are no more demolition plans for the Sungai Buloh settlement.

It also communicated its willingness to preserve this place as a national heritage to our Health Ministry. So I feel secure right now that there will be no more demolition.

I am glad the heritage department sees the value of this place and we actually hope that one day it will become a Unesco World Heritage site.

I HAVE VISITED THE LEPROSY SETTLEMENT IN JAPAN. It has a leprosy museum but what I want to do here is an oral history museum because our government has already launched one artefacts museum and one information gallery.

I feel that the preservation of the heritage is not only to preserve the physical buildings, but also the memories of the stakeholders here.

I JUST GO WITH THE FLOW. I listen to my inner voice, what I want and what is my target, what is my mission.

I think as long as I think it is worth pursuing, I will continue to run this project. I think it is beneficial and actually I learnt a lot of things.

I have a very strong relationship with the old folks here, and I can learn a lot from their life experiences.

THE PATIENTS JUST WANT PEOPLE TO REMEMBER THEY DID NOT COMMIT ANY CRIME. They were forced to segregate themselves and be separated from their families. They want to regain their dignity, let people understand their medical experiences, especially their future generations.

They hope that their future generations will be proud of their history.

This is why we want to establish an oral history museum. If this project meets its objective, we believe that the Sungai Buloh settlement community here, can make a difference.

They have the courage, confidence, ability and knowledge to tell the world about their emotional world, including their hopes, and wishes, to make known their plight.

Malaysians Kini is a series on Malaysians you should know.

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