‘The Ambivalence of Relocation: The Experiences of Individuals Affected by Leprosy in Singapore’. The STAR, Carville. 64 (2), July-December 2005: 9-14.
http://www.fortyandeight.org/carville/July_Dec_2005_The_Star.pdf
The relocation of individuals who have had leprosy in Singapore tells two stories. One is of progress, where the individual is moving to a better place. When the 61 former patients staying in the 34-year-old Singapore Leprosy Relief Association (Silra) Home at 18 Lorong Buangkok were relocated to new premises at 80 Buangkok View on 10 September 2005, this was the story conveyed to them and the public. The old place, the Silra management explained, was run-down and had to make way for redevelopment for a school. In contrast, the new multi-storied building, sited in the large Buangkok Green Medical Park, is clean and boosts elevators and new toilets. This story, which is the more dominant, represents the authorities’ perspectives. It also parallels the larger Singapore Story, which is based on similar notions of growth, sanitation and order.
The other story is personal and often hidden. It is based on the experiences of the thai-ko – the local Hokkien term for those with leprosy – not on the values of modernity. This is not to say that the Silra residents do not grasp the logic of the move. One month into a fresh chapter of their lives, many expressed satisfaction that the new Home was clean and they no longer risked having termite-bitten ceiling beams collapse on them. What defines the second story, rather, is that it holds that an individual’s welfare is not dependent on material comfort but on appreciating their unique needs. In this view, there is much to admire about the old premises and much that is unsatisfactory about the new one. As most residents had stayed at Silra Home from the time it was built in 1971 or when Trafalgar Hospital, their former abode, was closed in 1993, they had formed a strong attachment to the former place. But this is not the usual nostalgia that people experience when they move, which weakens with time. The reluctance to leave is complicated by anxieties over pragmatic concerns of living in unfriendly conditions.
For those individuals who are visually impaired or have other physical disabilities, the new Home is a daunting piece of architecture. In the past, getting around was done with relative ease on even ground. Now many of the residents are not used to taking the elevator and fear that the doors will close as they get in. They can also use a sloping ramp to get to the second floor. They have to be strong, as Mr Chan Mun Tuck showed reporters when he tried to wheel himself up. At one point, he had to hold onto the railings with both arms to prevent himself from rolling backwards. Each toilet, which has a single cubicle for those who are handicapped, has a similar ramp. Mr Joseph Tan, who is blind and wheelchair-bound, slipped on the ramp and fell backwards, hitting his head.
The issue is not about ramps or elevators. It is about recognizing that people, while old and reliant on government welfare, deserve to be treated as befit their rights and needs. That this has not been done is manifest when Dr Seow Chew Swee, the President of Silra, explained that the designs of the ramps and toilet door handles – which were too short for those with disabilities to grasp – had to satisfy building standards. Not surprisingly, the residents feel they have been taken from a place which felt like home to a hospital which treats them as patients. Although cured, they have to wear a uniform, since it was reasoned that this would be cleaner than their own clothes. Where they previously stayed in proper rooms – three or four persons per room – they now live in wards and sleep on hospital beds, up to twenty a section. Mr Chan and his wife are one of two couples who occupy two separate hospital beds in a corner on Level Two.
Relocation has always been part of the history of leprosy in Singapore. In the late nineteenth century, the discovery that the disease was caused by a pathogen, coupled with European fears about the unhygienic ways of the Asian populace, led the British government to make the segregation of leprosy sufferers compulsory in 1897. Despite evidence that leprosy was only mildly contagious, patients were to be confined in leprosaria for the public good. They were barred from a wide range of occupations and those who sheltered them were liable to be charged. Since 1845, individuals with leprosy in Singapore were segregated at several overcrowded, semi-permanent premises until a female ward was built at Trafalgar in 1926, and a male one in 1930. Formerly a rubber estate removed from the Municipality, the asylum was called the “Singapore Leper Asylum” and renamed Trafalgar Home in 1950.
Compulsory confinement at Trafalgar constituted the first relocation, which cut those with leprosy off from their family, kin and friends. The asylum was essentially a prison, guarded by jagas (Indian watchmen) and surrounded by high walls and barbed wire. Inside, the occupants, who had to wear uniforms bearing the letter “L”, found no effective treatment, only painful and at times harmful hypodermic injections, until the sulphone drugs appeared after World War Two. If they left without permission and were re-arrested, as the law required, they were placed in a solitary confinement cell for two to three weeks with only light rations such as bread, porridge and water.
The second relocation was to leprosaria in Malaya, since Trafalgar was only a holding centre for male sufferers until the 1950s, when Singapore had separated administratively from the peninsula. The official euphemism for this was “transfer”, but its ritual involved herding men under an armed escort of Bengali policemen to Pulau Jerejak, a tiny and for a long time unhealthy island east of Penang, or Sungei Buloh, twelve miles northeast of Kuala Lumpur, bounded on three sides by tropical jungle. From 1886 until the war, between one-fourth and half of the male population were transferred to Pulau Jerejak and Sungei Buloh. In the 1930s, the British policy was not to transfer those with relations and friends in Singapore but this was unavoidable given the increased admissions and overcrowding during the interwar and immediate postwar years.
Children with leprosy came under the sweep of compulsory segregation in the interwar years and more substantially after the war. In 1937, the authorities recommended that “the primary object should be child protection” and the confinement of infected children. A study of Chinese children with leprosy at Trafalgar in the early 1960s found the social impact of segregation severe and long-lasting. Their initial feelings were of homesickness, having been removed from their families at a young age, and fear at seeing the disabilities of the older residents, who told them stories, such as “if within three years I am not cured of the disease, I would be burnt alive”. Some children felt a sense of abandonment by their parents, such as one mother who refused to accompany her daughter for admission. Although most got used to the confinement, the experience permanently changed their self-image. When they returned home on leave, many did not feel comfortable dining with the family. One boy, Jimmy, explained, “As I am not yet cured, I must take precaution not to spread the disease to the others. Therefore I must isolate all my eating utensils, though I am feeling a bit sad – can you see, you miss the fun of sharing”. Self-stigmatization also led others to say they had been at a boarding school to explain to their friends their absence from home.
Another aspect of “child protection” was the separation of children from parents with leprosy at the earliest possible age. Because the authorities feared that the patients would infect their children, the mother was returned to Trafalgar after giving birth in Kandang Kerbau Hospital and the child given to the care of relatives or a children’s home. Only in the postwar years, when leprosy was curable, were the parents likely to be reunited with their child. Mdm Jane Collar, whose father had leprosy, stayed with her grandmother when she was a child. She remembers that “my dad didn’t carry me much. Although he loves me because I am his only daughter at that time, he would just hold me. But he cannot always be very close, because they are not allowed to go near to their children”. But the grandmother, by telling the jaga that they were passing through, would sneak her and her brother into Trafalgar to her father’s chalet, where they spent the time writing, drawing and watching 16mm movies at the community hall.
Mdm Collar’s experience suggests that, while most relocations were involuntary, the residents were not always hapless victims and sometimes contested their incarceration. Escape was such a form of resistance. In the 65 years between 1886 and 1981 when escapes were noted in the official records, there were 1,147 attempted escapes at the Singapore asylums, or an average of 17.6 attempts per year. At Pulau Jerejak, the residents hired boats from Malaya to convey them to the mainland, only a mile away. The authorities called escape “absconsion”, but the term implies a consent to be confined which most sufferers had not given. There were two forms of escape: permanent and temporary. Those who were born locally went home to their families for some money and clothing and then returned to the asylum, since the stigma attached to the families of those with leprosy prohibited a permanent reunion. If the person, however, had been transferred to an asylum in Malaya or had not been in the country long, they were likely to leave for good. Others fled the asylum temporarily to hide and avoid being transferred, returning when the authorities had taken someone else in their place.
The final relocation was the discharge. Here the stigma against those with leprosy blocked efforts to reintegrate into the community, something that, as stated by a Silra official, “no amount of wonder drugs could solve”. Ostracism was likely to affect those with disabilities, who found it difficult to persuade their family and friends that they had been cured. It also impacted the elderly, whose parents, spouse and friends probably had passed away. Women found rehabilitation more difficult, as many “[s]ingle women have lost track of their friends and are unknown in their Kongsis or clubs”, “[m]arried women often find their husbands have taken a second wife and they are not wanted, or they have been divorced or the family has moved house and cannot be found”.
The story of Mr Joseph Tan is by no means an atypical one. He walked out of Trafalgar during the Japanese occupation in 1942 and went home. His father welcomed him but died soon after. An aunt demanded, “Your father has died. Why don’t you want to go home? What are you waiting for? Otherwise, all my grandchildren will also get thai-ko”. Mr Tan related what happened:
I want to go back. I pack my things, some clothing, then I walk out. When my mother came to know about this, then she chased me back. “Don’t care what they say, I want you to stay [at home] until the seventh day. We will all go to the cemetery and give our last respects to our father and at that time you can go”. I said, “OK”. After the seventh day, we went and said farewell to our father. When we were coming back home, I waved them goodbye. I will never enter this house now. OK, I will go out now, I will go to my place where I stay. So I walk until there’s a bus, that’s only ten cents or twenty cents, wait until Lorong Buangkok, then at Woodbridge, then I stop and slowly walk to my camp. There I stayed until the end of the occupation.
Discharge was impossible without economic rehabilitation, but this was a lifelong challenge. Given the threat of ulceration, particularly of the feet, more “[o]ften than not, these patients are employed in jobs which causes them to have a breakdown to their ulcers”. Many lost their jobs when they returned to Trafalgar for treatment. Monil bin Rahmat, a former fisherman who was cured of leprosy, left Trafalgar to live in a squatter hut in Ulu Siglap, where he resumed fishing, and when the land was reclaimed, made bird cages for a living. Then, he felt that “I am not at all ashamed to say that I’m very proud of what I’ve done with my life so far”. But a persistent leg ulcer in 1985 forced his return to Trafalgar and, destitute, he was eventually admitted to Silra Home.
Unsympathetic employers and fellow workers also made finding and keeping work a struggle. A tailor shop owner explained why he had to let go of a former patient working for him, “What could I do? He was a good workman but where could I find nine other tailors to replace my men who threatened to leave?” Work became easier to find when public attitudes gradually changed in the 1950s. H. M. Burkill, Director of the Botanic Gardens in 1957, came to know of a young former patient who had difficulty finding work because his fellow workers complained about his past. Burkhill found him “an excellent person” who was knowledgeable about local plants and employed him to work in the herbarium, telling him not to reveal his disease to others. When Burkill retired in 1969, the young man was still there and apparently doing well.
Given the difficulties of rehabilitation, many former patients chose not to return home. Lim Ah Hin, a Silra Home resident who plays the harmonica, explained why he did not return to his family upon discharge:
I had a younger sister staying at Jalan Kayu. When she knew that I had been discharged, she asked me to help her rear some chickens. I didn’t feel comfortable, you know. After staying for one month at her place, I went to Malaysia, went for 20-30 years. Suffering from this disease, I felt about my self-esteem, you know. When we were eating together, I felt uncomfortable because I had this disease. So I took my own initiative.
A study of former patients living in Lorong Buangkok in the mid-1960s, a village in the northeast of Singapore and close to Trafalgar, suggests that the villagers had accepted them. The villagers prayed with them at the local temple, sold them provisions and played mahjong (a game of Chinese tiles) together. The locals had no objection to their children attending schools with the children of the former patients. Indeed the pupils of Soo Teck Chinese School in the vicinity showed no prejudice to the children of former patients and mixed freely. What might have happened if a less stigmatizing policy had been implemented from the start is a question that needs to be asked. In a history peppered with discrimination, Lorong Buangkok stands out as a case of how those with leprosy and the community can be integrated.
As painful as the relocation of Silra Home is, it is not the first time this has happened. Instances of relocation have often been accompanied by a deep sense of dislocation. Many of the Home’s residents experienced a similar move 12 years ago, when Trafalgar Hospital was closed. The event was just as painful, as many of them, who had worked there as clerks, nursing aides, grass-cutters, sweepers, and cooks lost their incomes and a way to organize their lives around meaningful work. Many of them, too, would have experienced leaving Trafalgar to return to their families or find work, with varying degrees of success.
These are the stories of a marginalized minority whose interests have been sacrificed in the name of progress, sanitation and the common good. Yet their stories also highlight a basic human fortitude born out of experiences of stigmatization and incarceration. As wheelchair-bound Mr Lim Kah Lee, Silra Home’s successful artist, insists, “Disabled is not unable”. Already many residents, even at their old age, are coming to grips with their new Home. Close friends Mr Lim Ah Hin and Mr Chia Puay Song, who plays the dulcimer, share a positive philosophy of life:
I consider that my life is bad but our fortune at this last stage of our lives is good. You compare the flats outside to our place here. Because they have their own properties, while here, we are renting. It’s different. You look for yourself. Can we say it’s not good? We can’t. At this final stage of our lives, living like this, we should consider ourselves fortunate. Can’t work and you collect welfare money. One month about $200, how do you make a living? Frankly, not enough. But you must be realistic. You can’t work. Still say not enough, then what’s considered enough?
These stories are not great tales of economic achievement or national advancement but, even more so for this very reason, they need to be told.
References
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