Growing up in quarantine in the Sungai Buloh settlement

The Sungai Buloh Leprosy Settlement was the second largest leprosarium in the world. (Facebook pic)

PETALING JAYA: Yeoh Soon Hwa was 10 years old when he was sent to the Sungai Buloh Leprosy Settlement from his home in Bagansiapiapi in Riau, Sumatera, after he was found to have contracted the bacterial infection. That was in 1961.

“My mother hired somebody to bring me to Malaysia on a fishing boat,” he said in a recent interview with FMT.

He recalled feeling terrified but said he quickly felt welcomed and soon became friends with the many other children at the settlement. “We’re like brothers and sisters here,” he added.

Children at the leprosarium were enrolled at Traver’s School, named after EAO Travers, the doctor who is regarded as the founder of the settlement. He was a health official at a leprosy asylum in Setapak and was appalled at the terrible conditions there. He proposed to the British government that a more humane centre be built in Sungai Buloh. By 1930, the settlement had been fully constructed.

Yeoh said he worked hard in school and was active in sports and other extra-curricular activities.

However, he couldn’t find work after completing his secondary school education because there was a shortage of jobs at the settlement, which was then housing more than 2,000 patients. The centre employed inmates at jobs like gardening, shopkeeping and even nursing because the stigma associated with leprosy made it difficult to employ outsiders.

Yeoh eventually stopped waiting for a job and, with a friend, started planting flowers at the settlement. He ran his nursery for nearly 30 years until 2000, when the government took over the plot of land he was planting on.

He has since been jobless and depends solely on government assistance. He expressed gratitude to the government for taking care of him despite his status as a non-citizen. But he has been applying for citizenship since 1967.

Yeoh Soon Hwa has been applying for citizenship since 1967. He is seen here with his portrait, which will be on display at the National Art Gallery in March.

Yeoh was declared free of leprosy in 1969, but has never got married. “The women are scared I may get deported,” he said in a giggle.

Leprosy patients were allowed to marry among themselves, but their children had to be given up for adoption.

Joyce Wong, now 47, was born and raised in the settlement. She never had leprosy, but both of her parents did. They didn’t have to surrender her for adoption because they moved to private land just outside the settlement.

In 2002, she published “The Valley of Hope”, a book which documents stories about the settlement’s inmates, of their separation from loved ones and of the discrimination they faced. She told FMT those still residing at the settlement sometimes still faced discrimination despite their being free of leprosy.

She said every child born in the settlement was raised separately from its parents in a home inside the facility. The home would care for the babies for six months, during which time the parents would have to find relatives or friends willing to adopt them. Otherwise, the children would be given up for open adoption.

Those who were not adopted into families would be in the care of shelter homes. “They would come back to the settlement to be with their parents during school holidays, but they grew up outside in shelter homes,” Wong said.

Wong grew up at a time when the British government had started becoming more lenient with its policy of segregating leprosy patients and people were able to move in and out of the settlement.

Despite that, there was still a stigma associated with the disease. She said outsiders tended to be frightened of the inmates and she attributed this partly to writings that describe the infection as highly contagious.

Joyce Wong, whose book ‘The Valley of Hope’ tells the stories of the leprosarium inmates.

“A lot of older patients who contracted the disease before modern medication came about would be disfigured or would have gone through limb amputation. This was also why the disease was feared so much.”

She went to a school in Kepong, 20km away. The school bus that took her there also catered to children of the medical staff at the centre.

She said she didn’t know of the stigma associated with leprosy or the settlement until she started school.

“Normally, parents here would tell their children they should not mention that they came from Sungai Buloh,” she said. “The stigma was quite strong during my schooldays in the 70s. We would get ostracised in school, or get bullied, if people knew we were from Sungai Buloh.”

She said her parents looked healthy and normal, but her father, who worked as a carpenter outside the settlement, would never tell his employer and colleagues he was from Sungai Buloh.

She also said her relatives were ashamed of her parents and would lie about where they lived when speaking to guests at festive open houses. “They didn’t want them to start asking questions.”

In those days, she added, leprosy was so feared that an entire family would feel the social pressure if a member of it had the disease.

“Some would move away to a place where no one knew about their brother or sister having leprosy,” she said. “Some would hide their bandages when they get ulcers or blisters, or wear socks or long sleeves to hide them.”

The settlement, renamed National Leprosy Control Centre in 1969, was the second largest leprosarium in the world and contributed immensely to medical research.

Wong now works to raise awareness against the discrimination faced by former patients and to have the settlement recognised as a national heritage.

“At least before leprosy is totally forgotten, people should be aware of how discrimination affects certain minority groups such as leprosy survivors,” she said. “People would understand the harm that comes with lack of information and understanding.”