Wednesday, November 14, 2007

News:(TheStar)Triumph over hardship

In 1949, at the age of 15, Ratan Singh was taken from his classroom at St Michael’s in Ipoh, Perak and thrown into a police lock-up at the local hospital.

His crime? Leprosy.

“All I know is that I went to school one morning and never went home again. I heard that my family disowned me when they were informed I had leprosy.

“Soon after this, I made the journey alone to the Sungai Buloh Leprosy Settlement with just RM5 in my pocket. I refused to take the dreaded green train which transported sufferers back then, because people scurried away or pointed at us and said cruel things,” recalled Ratan.

Ratan died early this year aged 72.

Patients of the Sungai Buloh Leprosy Settlement.
I spoke to him during a visit to the settlement where he was a committee member of the Sungai Buloh Leprosy Settlement Council. He said there were 2,500 inmates when he first arrived in 1949. Today, there are only 341 left. The settlement itself is being torn down to make way for a UiTM medical faculty.

Some want to ensure that its memory is preserved, if the structures cannot be.

Joyce Wong Chau Yin, 36 and Phang Siew Sia, 38, grew up in the settlement as children of leprosy patients. Life was blissful there, say the two, who have written a book on the place called Valley of Hope.

It chronicles life within the settlement in 1930 when leprosy infections peaked, until its eradication in Malaysia today.

“My parents had fully recovered by the time I was born in 1971. I grew up with 20 families like us in this green paradise, away from discrimination,” Joyce Wong remembers.

“Yet, our parents instilled in us the need to keep leprosy a secret in the family. We went to school outside the settlement, and didn’t even tell our schoolmates where we lived,” says Wong.

According to her, they did not at first understand the stigma attached to the disease but encounters with the outside world soon made the fears very real.

In their book, Wong narrates an incident in which a horrified classmate said her father had told her of a leprosy hospital in Sungai Buloh, where ugly, deformed people were locked up and never allowed to leave.

It should come as no surprise then that many children of leprosy hide the fact from colleagues, friends and even spouse and children. Wong and Phang wrote their book in order to better understand their past.

“We thank God for Joshua Raghavar’s book, Leprosy in Malaysia – Past, Present and Future, because it gave us a headstart on where to look and whom to contact,” Wong reveals.

“We discovered that the Sungai Buloh Leprosy Settlement was a ‘gift of hope’ to a people who had lost the will to live. This is why we named our book, Valley of Hope. The stigma was so bad that even our parents never told us all that they had experienced until we coerced them into talking for the sake of the book,” says Wong.

Back then, leprosy patients were deprived of everything, including an education. But some of their children, like Pang, have earned a Masters degree while Wong is an accountant.

“We feel a duty to tell the story of the visionaries who gave birth to the settlement – the kind staff, our parents and the patients themselves whose dreams were stolen from them, but who found the will to find new ones in this Valley of Hope,” says Wong.

Pang and Wong’s book tells of many instances of kindness by uninfected people who helped influence the lives of leprosy patients. Saw Cheng, a patient who has been living at the settlement since she was 16, recollects how she was once bedridden and at death’s door when a nurse kindly attended to her.

Authors of Valley of Hope Wong Chau Yin (far right) and Phang Siew Sia (far left).
“This nurse would carry us to the bathroom and gently clean us everyday. She wouldn’t let the other staff do it for fear they would be rough with us. I can’t remember her name, but she made us feel we were not being left in the bed to rot,” says Saw Cheng, who recovered and is still living in the settlement.

The late Ratan, too, recalled how Gurkha soldiers once shared their meals with him and kept him from going hungry when he made his journey to the settlement.

Before the 1960s, the book says, no one dared to step into the settlement. In fact, buses would stop 4km down the road, and visitors had to walk the rest of the way.

“Benches for visitors and inmates were segregated by marking them green and red. Visitors were sprayed with disinfectant as they left, making each visit a terrible experience. Soon families and friends stopped coming,” says Saw Cheng.

Joyce and Phang never experienced any of these things, though, because by the time they were old enough to understand the stigma, it was the 1980s, and they could move freely in and out of the settlement.

Researching their book helped uncover many secrets about their past, such as how they were kept at a place called Babies Home for six months after birth, while their parents decided what to do with them.

“Our parents recovered and could keep their babies. But others had to give them up for adoption, send them to foster homes or had them adopted by British officials who took them back to Britain after Independence,” reveals Wong.

Some of these children have returned to the settlement from Britain and other parts of the world to learn about their past.

Wong and Phang hope their book, and the pictures in it, will give these people some answers. Most importantly they want all the children of leprosy to know that theirs is not a past to be ashamed of, but a proud story of a people who triumphed over extreme hardship.

Before his death, Ratan visited his hometown for the first time since he was snatched from school all those years ago.

“My father had since passed on, and I never reconciled with my family.

“I remember meeting one classmate who is now a doctor. He said to me: ‘We were in the same class, Ratan. You were doing very well academically. The only reason I’m a doctor and you’re not is just a sad twist of fate’,” said Ratan, who spoke 11 languages fluently at the time of his death.

Valley of Hope is published by the MCA Subang Division. To purchase a copy, write to or, or call 012-3290301 (Joyce Wong).

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