Malaysia leprosy settlement fights on

By Robin Brant
BBC News, Kuala Lumpur

Campaigners say the settlement is an important heritage site

Dozens of people with leprosy in Malaysia have teamed up with students to try to save a decades-old settlement.

Residents of the Sungai Buloh settlement, in a lush valley on the outskirts of Kuala Lumpur, are being forced out of their homes and into new accommodation, to make way for the expansion of a neighbouring university.

Developers were given permission to build on the site where leprosy has been treated for almost 80 years.

The 39 people fear that the rest of the site will be built over unless the government agrees to protect it.

Spread over 600 acres, most of the buildings on the settlement are now dilapidated.

This place must be kept for heritage so the next generation will understand Lee Chor Seng

But the community has not vanished.

There are more than 300 residents. There used to be many more - about 2,000 at the peak.

When Lee Chor Seng first arrived in the 1950s, the inhabitants were all patients, seeking treatment for an incurable disease.

There was a time before that when they were inmates, locked away from the rest of society.

Now they are simply residents, and Mr Lee is their leader.

Welcoming community

Mr Lee, 88, is a small man who uses a crutch to get around.

His tiny feet bear the evidence of the leprosy that has haunted him for all of his adult life. He has no fingers on his right hand.

Mr Lee said he had been happy living in the settlement

Bandages are tight around his ankles and his left eye droops open. It is permanently teary.

Of all the people on the settlement he has some of the most crippling deformities, but he is the one most prepared to speak.

He said that although he felt sad when he first arrived, he soon started to enjoy living at the settlement because the outside world was scared of people like him.

That fear, born of ignorance, was what led two British doctors to conceive Sungai Buloh as a radical new way of treating people with leprosy.

They wanted them to live and work together, as a community, sustaining themselves.

It worked, and it continues to work today.

The residents sell plants to weekend shoppers who come to the nurseries dotted alongside the small winding road which takes you to the settlement.

"This place must be kept for heritage," Mr Lee said, sitting under the door frame of the home-cum-office he has occupied for decades, "so the next generation will understand this settlement is for the leprosy people."

'Great achievement'

Campaigners have been telling people about the site's history

Mr Lee said his community was not against the expansion of the Universiti Teknologi MARA (UiTM) per se, but he wanted to make sure that, once they had all gone, part of the settlement would be preserved so that the disease which has blighted their lives was not forgotten.

"This place is so beautiful," he said, "... something like a small country."

Two students who were trying to garner support for a campaign to preserve the site told me that a building which sits at the main entrance used to serve as a post office and bank.

The patients do not know their rights... most of them are not educated Lim Yong Long, researcher

It was where the patients would collect their money - not Malaysian money but their own currency, printed at a time when ignorance of leprosy created a fear that the disease could be spread by sharing banknotes.

Architecture researcher Lim Yong Long said that the work done on the settlement was "one of the greatest achievements of the Malaysian government and the British government over that period".

"The patients do not know their rights... most of them are not educated," he explained.

He claimed the land was given to them by a sultan, when they had nowhere else to go, so they have a right to stay.

Poor consultation

That is not how the university sees it.

A fence has been put up on the site of the new medical facilities

In a statement to the BBC, the university's vice chancellor, Prof Dr Ibrahim Bin Abu Shah, said: "The area of Sungai Buloh is owned by the government and is not private property.

"Therefore it is not a question of depriving anyone of their rights but the owner's right to reclaim its property."

The university also questions whether any of the buildings are truly important enough to warrant national heritage status.

It has already built new homes for most of the people who are being uprooted, and compensation is also on offer.

A blue fence has been put up, encircling 40 acres, where the new medical facilities will be built.

I walked around and saw piles of bricks, neatly massed in the middle of the clear outline of what was once the outer walls of numerous houses.

The demolition is well under way.

Some of the residents complained that the consultation process, which was meant to consider the views of all involved in the new development, was still continuing when the diggers and the trucks moved in.

Lee Chor Seng and many of the others on the settlement accept the government ruling. But he acknowledged that the community felt as though they had not been extended the respect they deserve.

UiMT says it will "honour and perpetuate the stories of courage of those who relied on the spirit of self-reliance to rebuild their shattered lives" with a plaque at the hospital.

Lee Chor Seng wants more than that.

He wants people to see where some of Malaysia's leprosy patients were greeted, housed, treated, educated, and where they died.

He wants this community, which gave him his life back, to go on, long after he is no longer around.