Marriage and Descendants

Loke Seng Kah usually brings some dried snacks along when he visits his 90-year-old mother at the hospital ward. Just like many other members of the second generation of leprosy patients, he was given away to a foster family as an infant and only learned about his origin later in life.

Loke Seng Kah, now 67 years old, was born in the Sungai Buloh Settlement in 1949. Both of his parents are leprosy patients and he is their eldest son, with five younger siblings after him. His aunt took care of him and his youngest sister, while the elder of his younger sisters and two of his younger brothers were given away to a foster family living in Kampung Baru Sungai Buloh. A Malay family adopted his other younger sister.

When Loke was one-month-old, his aunt took him away to Penang and raised him as her own son. He called her “mum” ever since he was little. When he was 6, he moved to Kuala Kangsar with his aunt. When he was around 10, his aunt brought him to the Sungai Buloh Settlement to visit his parents for the first time during a school holiday. Occasionally, his father would take a train to Kuala Kangsar to visit him. Their family bonds were maintained through the long journeys, however weak they may be.

Loke’s mother, Lim Nai, ran a sundry shop in the settlement when she was younger. His father helped her man the shop and worked as a taxi driver at the same time. Both his parents only suffered from a mild case of leprosy and their physical appearance were fine. So when his father had been fully cured, he moved out of the settlement as a discharged ex-patient and lived in Kampung Baru Sungai Buloh. Since discharged ex-patients were not allowed to stay overnight in the settlement, his father would work at the sundry shop during the daytime and return to the village in the evening.

In 1969, Loke Seng Kah and his aunt moved to Kampung Baru Sungai Buloh from Kuala Kangsar and lived next to his three siblings. He said that he does not feel very close to his birth parents and siblings because of the separation since infancy and that it can’t be helped.

When he attended secondary school, some of his siblings were sent to Monfort Boy Town in Shah Alam and the Pure Life Society in Jalan Puchong. Other welfare homes which had previously looked after children of leprosy patients were the Kuala Lumpur’s Sisters of the Infant Jesus, Bukit Nanas Orphanage, Good Shepherd Convent in Batu Arang, Selangor, Rawang’s orphanage, Ipoh Boy’s Home run by Salvation Army, Malacca’s convent, amongst others.

Weak family bonds

According to Mother Mangalam, the president of Pure Life Society, they took in the first batch of children from the Sungai Buloh Settlement in 1953 and the last, in 1978. Over the two decades, the welfare home had taken care of 37 children born to leprosy patients and the age of the children ranged from 8 to 10. Though the settlement had Travers School for children, Mother Mangalam believes that the parents sent their children to the Pure Life Society instead because they cared about their child’s education.

Mother Mangalam started to serve the patients when she followed Dr Swami Satyananda, the founder of Pure Life Society, to the Sungai Buloh Settlement as his assistant in 1951. During her first visit, she was shocked and heart-broken to see so many disabled leprosy patients.

The current site of the Pure Life Society was not even ready yet when the welfare home took in the first batch of children. She said that they had previously taken in a boy who had leprosy and they had to take him out to receive sulphone injections every week. He recovered fully when he was in secondary school, found a good job after graduating and is now a skilled worker. Before he got married, he returned to the welfare home to get her blessing. He has become a grandfather now.

S. Selvadurai, the former Chief Administrator of Pure Life Society who had also worked in the welfare home from 1959 to 1992, said that they would let parents come and spend time with the children in the canteen, after lunch at 1 pm every Sunday. He remembers that the leprosy patients would bring food and fruits when visiting their children. The welfare home advocated vegetarianism and provided vegetarian food only, so parents were only allowed to take their children out for non-vegetarian food. He recalled that the children were usually quiet when they were spending time with their parents and that their bonds were very weak.

“When they grew up, they learned about their origins, and people’s discrimination against leprosy and its sufferers. But they never talked about their background, they were just like normal kids.”

Mother Mangalam recalled a boy whose biological father suddenly came looking for him after years of separation. The boy refused to meet his father. “He was very firm and insisted that he doesn’t know that man. His father passed away later. He was calm when he received the news. He used to work for the KWSP (Employees' Provident Fund). He is retired now but he is still sending in a donation of RM100 from time to time.”

She said the welfare home was pleased to see the children reunite with their parents but efforts to bond was made difficult due to the government’s segregation policy, society’s fear of leprosy and the long separation between family members. Besides, some children simply refused to acknowledge their parents because they were worried that their origins would jeopardise their prospect in life and that society would reject them.

She said the Pure Life Society never disclosed the children’s origin and they believed that all diseases were curable. Everyone received equal treatment regardless of racial, cultural and religious background. So all children in the welfare home got along very well with each other, including children of leprosy patients, who were not discriminated by the other children.

However, there were a few children who experienced some discrimination. She recalls that a family once adopted two girls from the welfare home and took them to Australia. The family had a pleasant time together but as soon as the parents discovered that the girls are descendants of leprosy patients, the girls were sent back to the welfare home.

Babies sent away

Since the 1930s, the British government implemented a child protection policy and separated leprosy patients from their children. When a patient gave birth to a baby, the baby would be whisked away to a Babies Home located within the settlement for a temporary care of six months. During the six months, the parents were permitted one visit per month and each visit was limited to one hour. The parents must also find a caretaker, for example a relative, to take care of their children, or arrange for a place for the babies to go to when the six months is up. Hence, many children of leprosy patients grew up in foster families, orphanages or convents.

Low Ah Fong is a former leprosy patient who used to work as a laundry worker in the settlement. She had a son whom she never got to hold once. After giving birth to her son, she only managed to take one look at him before the nurse took him away to the Babies Home. Thereafter, she could only visit her son once a month. “The nurse held my baby in her arms and only allowed me to look at him from a distance. I couldn’t get close to him. They just let you have a look. Did I get to hold him? No, I did not get even a single touch.” Eventually, Low Ah Fong’s son died before he reached six-month-old.

Gwee Ah Kay, another inmate, reminisced and said, “When I was about to have a baby, I immediately got someone to help me write a letter in Malay and sent it to a convent in Malacca, asking a sister to look after my child on my behalf. I said, ‘I have a child, about 6-or-7-month-old, can you help me to take care of my baby?’ She said ok and we sent our baby to the sister in Malacca after about 6 or 7 months. We paid the convent every month. They did not take much, just 30 dollars a month.”

She had two daughters and a son. Her eldest daughter was given away to the convent in Malacca and her son was taken into the care of welfare homes in Kepong, Selayang, Rawang, and other places. The youngest daughter grew up in Bukit Nanas Orphanage. All three children were sent to different places, so their parents had to travel to a few different towns to visit them.

Her husband, Wong Yoke Onn, said, “Yeah, it wasn’t easy. The Council has a bus to take us there. We go here this week, and then go there the following week. That’s how we worked it out.”

When asked if their children had strong bonds with them, he said frankly, “No. Not really. They would even cry sometimes when they see us. They were not familiar with us because they were brought up by the sisters. Sometimes, we could bring them home for a while, for example during the holidays. We looked after them and played with them here. When they cried, we would tell them in English, ‘We’ll take you to Port Dickson for vacation tomorrow,’ and then they would calm down a bit.”

To establish a DNA bank

In order to distinguish the children of leprosy patients from other children, they were given smallpox vaccination on the inner thigh and not on the arm, which is the norm. This is one of the signs that a person is a descendant of leprosy patients. Besides this, one other important clue that may help a descendant trace their birth parents is the birth records kept by the settlement’s clerk, Philip Yong.

According to the birth records, the first baby was born in the settlement on 9 December 1945 while the last one was born on 28 October 1982. There were 1,147 babies born in the settlement over the 37 years. Philip Yong said the biggest challenge that the descendants faced when tracing their origins is the lack of sufficient information, for example, the exact, full name of the parents and the children’s own date of birth.

Nevertheless, DNA testing is required in order to accurately verify the identity of the descendants. The settlement authorities once promised to set up a DNA bank but there is still no sign of implementation today. Dato Dr Khalid Ibrahim, the director for the settlement, acknowledged the importance of this measure. He said, “It is very important to collect DNA samples from the recovered leprosy patients. They were forcefully separated from their children because of a previous policy but their children may return to look for them in the future. So this DNA bank is very crucial and we will collect DNA samples from the ex-patients.” He said that the Ministry of Health already possessed the relevant equipment and that the actual process is not very difficult, so he believed the collection of samples can be done by mid-2017.

A Malay lady’s quest for her birth parents

Three descendants of leprosy patients have in recent years managed to identify their origins with the help of Philip Yong ­– Julie who was adopted by Australian parents, Esther who was adopted by New-Zealander parents, and Noraeni Mohamed who was adopted by Malay parents.

Having witnessed a number of reunions of long-lost families, he said, “Surely it was very touching. At last, they have found their children after decades of separation, with help from so many parties. Those moments were really memorable.”

One day in 2009, Philip Yong learned from the newspaper that a Malay lady named Noraeni Mohamed had sought Michael Chong’s help in her search for her biological parents. So, he called Michael Chong’s office and left a message, suggesting them to approach him at the Sungai Buloh Settlement to check the settlement’s birth records for more details, but he received no response from them.

Then, Tan Ean Nee, a former television broadcaster who is now a member of the Settlement Council, contacted Noraeni and helped her to locate the grave of her biological mother, with assistance from Philip Yong and other inmates. Over the past decade, she has been helping descendants of the inmates in their efforts to trace their roots, besides writing stories about the former leprosy patients. She and Noraeni then co-authored a book entitled, Reunion at the Graveyard: A True Story of a Lady who was Determined to Search for the Truth of Her Origins, which tells the story of Noraeni’s quest for the truth of her birth.

Quite a few children of the inmates have been adopted by Malay families, Noraeni was not alone. One of Loke Seng Kah’s younger sisters was also adopted by a Malay family. Loke’s mother had never brought this up until she was in her 80s. One day, she suddenly told Loke that he had a younger sister who had been adopted by a Malay couple and asked him to search for her.

Loke reckoned that this sister was most probably given away because she was not born a boy. After the birth of his sister, her parents gave her away to a dresser (a doctor’s assistant) and the dresser in turn gave her to a relative of his. A lot of babies born in the settlement were given away just like that. Eventually, they found out that this sister has grown up to become a doctor. She has recently reunited with her mother and has paid her a few visits at the hospital ward. However, Loke never got a chance to meet with her so he left his contact number with his mother-in-law, who lives in the same ward as his mother, and asked her to call him if she happens to see his sister. He waited and waited, but the call never came.

“It seems as if I don’t have the luck to meet her. I would be glad if I got to meet her in my lifetime. We don’t care about things like ethnicity; all we want is to bond as a family, to acknowledge her. It doesn’t matter whether she wants to acknowledge us or not. Just one look, and we’ll have no regrets. It’s that simple.”

In October this year, Loke finally bumped into his sister in the hospital ward when she came to visit their mother. After decades, he has finally met his long-lost sister and has no more regrets.

No more discrimination

Many children of ex-patients grew up in a time when leprosy patients were still met with serious discrimination. Some of them have moved on but some are still living in the shadow of discrimination. Many leprosy patients used to advise their children not to let others know that they were from Sungai Buloh. Though times have changed, many descendants of the recovered patients are still reluctant to disclose their background. Loke, however, is an exception.

Back in the 60s and 70s, he said people used to be so afraid of leprosy that the mere word of “Sungai Buloh” would instantly strike fear in them. Therefore, inmates who were working outside the settlement would try to keep their previous case of leprosy to themselves.

“It was in the 1960s and 1970s. They lived in Sungai Buloh but dared not tell the truth. They would say that they lived in Subang, and claim so even at their workplace. Sometimes, when they attend an opera show in other villages, people would discriminate against them. Then they would talk about it when they return to the settlement.”

As a witness to how leprosy patients had once lived in fear, Loke hoped that by sharing his experience, he could help shatter the still existing social prejudice. “I want to tell everyone that this disease is not that scary. I want them to understand this so that the public won’t continue the discrimination against the second and third generation of leprosy patients.”

Interviewed by Chan Wei See & Wong San San
Written by Chan Wei See
Translated by Zoe Chan Yi En
Edited by Low Sue San

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