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The Way Home is a careful, emotional, and deeply sympathetic attempt by two journalists to document both the horrors of Leprosy and the disease"s ongoing legacy.


Oral History Video Clips

Promo Video

The Voices of the Vallley of Hope

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1. Story of Nordin

Research Lab Attendant

Nordin bin Abdul Rahim is a Malay man from Pahang who was born in 1961. When he was ten years old, he contracted leprosy, but his parents still kept him with them in their village until he had completed his secondary education. Because of this delay in seeking treatment, Nordin's face was seriously disfigured, and he was only urgently admitted into a leprosarium when his face, hands and legs were deformed. He was only 22 years old when he was admitted in 1983. During his early period of treatment, he showed signs of rejection and other side effects whenever he took the drug, Lampirin, which also caused his skin to become dark. Nevertheless, his family never abandoned him.

After receiving treatment, Nordin worked as a cleaner at a friend's chalet. He was paid RM5 per hour. In 1985, he became an animal attendant at the Research Lab at the Sungai Buloh Settlement, receiving a monthly allowance of RM 144.75. In 2010, Nordin suffered a viral infection in his right eye and had to undergo an operation to cut out his cornea. After that, he could no longer work. Severely disabled, he currently lives in Ward 88 (ward meant for the very ill) at the East Section.

Nordin can think clearly and speak articulately. Until now, he can give us a detailed description of his job at the laboratory. His routine at work included feeding the mice, cleaning the boxes of the mice and ensuring the cleanliness of the animal house. One of his unforgettable memories is seeing his colleague inject bacilli into the mice's feet for experimental purposes.

My job was to feed the lab mice

Even though Nordin is already partially blind and severely disabled, he is still facing life positively. He says that his strength comes from the religious and philosophical books that he read. One story inspired him to not be disappointed with life. "We do not need to be ashamed to have no shoes, for there are others worse than us who have no feet. So when I feel that I have been very unlucky, there are actually others who are even unluckier than me. I should not dwell on the negative things, I should think of the positive ones, "said Nordin.

2. Story of Lee Sow Cheng

Lee Sow Cheng's Story - "Kepala" (Attentant) cum Cook

The first time Lee Sow Cheng stepped foot in the Sungai Buloh Settlement was in 1936. At that time, she was only 14 years old. Even though she was already close to 90 years old when we interviewed her, her memory was still very good. She could still remember the things that happened when she was working as a cook in the settlement like it was yesterday. In 1945, Sow Cheng was transferred to the kitchens of the "Decrepit Ward" (from Ward No.48 - Ward No.57), hospital wards (from Ward No.24, Ward No.26 until Ward No.41), and Indian Female Ward (Ward No.82). Her monthly allowance was 8 dollars. That was her only source of income.

The "Mummie" Sow Cheng is referring to is Cheah Gaik Kiu(谢月球). Cheah was the settlement’s head cook in those days. Cheah and Sow Cheng cooked for the patients in the wards. The resident who lived in the chalets (屋仔) at the Central Section of the settlement arranged their own meals. Sow Cheng says that during the colonial days, the British colonial government supplied pork, beef and fish to the resident and staff in the settlement. She and Mummie were responsible for cooking the food for everyone.

In the 1930s, the average inmate worker earned between 3 to 16 dollars a month, and those with important duties such as the Section Stewards earned 35 dollars. Sow Cheng is tough, with a strong will to live. For the amount of work she did, the eight dollars she received in return was a paltry sum indeed. She toiled from day to night. The inmate workers were not entitled to a pension, tips, or medical leave. Their monthly allowance was calculated based on 30 days. In 1947, the inmate workers in the settlement went on strike. Sow Cheng was one of those who organized the strike and demanded better treatment for the resident.

In 1949, after working as a cook for two years, Sow Cheng resigned and became a guardian at the Children’s Ward until her discharge from the settlement in 1952. At that time, there were approximately ten Children’s Wards in the Eastern Section. Each ward could accommodate 24 child patients, and they were divided according to age and gender. In each ward, two children were chosen by the authorities to be monitors. A warden and an assistant warden, both of whom were inmate workers, helped to care for the children. Sow Cheng was one of those who looked after the children; the children called her the "Kepala" (Attendant). Her job was to maintain discipline and manage the children’s daily lives, such as sweeping, keeping the children’s mosquito nets, closing the doors, cleaning the drains, making milk, and delivering food and drinks to the children. She was very popular with the children, which is why the male resident called her "Queen of Kepala".

The Green Club which was built in the East Section in 1928 is the oldest club in the Sungai Buloh Settlement. There used to be various societies that looked after the welfare of their members such as the "Ng Fook Thong"(五福堂), Hokkien Association (福建会馆), and Teo Chew Association(潮州会馆),The Chinese Mutual Aid Association (华人同济会), The Indian Mutual Aid Association(印度同济会), Kheng Chew Association(琼州同乡会), Kai Liang Hui (改良会), Malay Association (马来会馆) etc . Most of the members of the Green Club spoke English, so the other resident called it the "Ang Moh Association" (Caucasian Association). On 16 September, 1949, Sow Cheng dressed up as Charlie Chaplin for a fancy dress competition organized by the Green Club. Coincidentally, Dr. Samy (the deputy director at that time) also came in the same costume. The doctor was angered by this, and as a result, he kept Sow Cheng firmly in his sight.

The deputy director actually kept a close eye on Sow Cheng for 14 months, making sure she did not flout the settlement’s rules of getting twice-weekly shots. One day, Sow Cheng was injured while getting her shot. The following week, she asked the hospital assistant on duty to exempt her from getting an injection. This single exemption was noticed by the deputy director!

Sow Cheng thought that she had probably already been blacklisted by the authorities for her role in leading and taking part in the strike. Offending the deputy director during the fancy dress competition was merely another crime to add to the list. Thus, she did not appeal the punishment. She asked a friend to help her buy a suitcase, packed her belongings, then ran over to the Children’s Ward to break the news to her beloved children. The children cried when they found out Sow Cheng was leaving, nobody could bear to see her leave.

"I told them, 'I will definitely come back at the start of every month to see you. It will not be possible for me to come in and visit. I cannot go to so many places. I will wait in the pondok (small shed) near the gate, and if you want to see me, wait for me there on the first of every month. I will be there!"

After being forced to leave the settlement, Sow Cheng had nowhere to go. All she needed was shelter, a bed, and two meals a day. Ultimately, because of her disabilities, Sow Cheng managed to be admitted into an old folks’ home in Ampang that was under the auspices of the Social Welfare Department. Naturally, she did not forget her promise to the children. On the first of each month, she would buy some nice things for the children to eat during her visit to Sungai Buloh. When the droves of children waiting at the pavilion saw Sow Cheng coming from far away, they would erupt into cheers, giving her a warm welcome!

In 1954, Sow Cheng was admitted into the Pulau Jerejak Settlement. Previously, in Sungai Buloh, she had helped a Caucasian nurse wash and cook. Sow Cheng worked hard, and even though she only earned five dollars, she did not complain. She was praised for her efficiency, and the Caucasian nurse was very fond of her.

In 1960, Sow Cheng had already been at Pulau Jerejak for six years when she received a phone call from the matron in Sungai Buloh. The matron told Sow Cheng that Mr. Fisher, the Inmate Lay Superintendent of Sungai Buloh, was in urgent need of a capable, hardworking worker to help him do household chores, so the matron had strongly recommended Sow Cheng to him. Thus, Sow Cheng returned, vindicated, to her familiar Sungai Buloh where she spent the rest of her life.

3. Story of Sim See Hong

Shim See Hong’s Story – Hospital Attendant

Shim See Hong was born in 1919. As a Chinese from Kelantan, he speaks fluent Malay and Hokkien. In 1944, he was only 25 years old when he contracted leprosy and was subsequently admitted into the leprosarium in Kelantan for treatment that lasted three years. Because there was a shortage of medicine in the Kelantan leprosarium, and Shim heard that the Sungai Buloh Settlement had better medicine that could cure leprosy, he requested for a discharge so that he could seek treatment in Kuala Lumpur. However, the Kelantan leprosarium authorities turned down his request with the excuse that there was no more space in Sungai Buloh. Consequently, he lied to the authorities and asked for leave to go home. The next day, he quietly left and took the train to Sungai Buloh by himself to apply for admission. The Sungai Buloh authorities took him in.

At Sungai Buloh, he was given weekly Sulphone injections and he recovered very quickly. After recovery, he intended to return to his hometown and reunite with his family but the settlement authorities asked him to stay back and work as a hospital attendant in the settlement.

When Shim first started work, his monthly allowance was 25.75 dollars. After two inmate strikes, his allowance was raised to the current RM 144.75. Shim worked until his retirement at the age of 90 and still receives his allowance. His wife also lives in the wards at the east section. Even though he is already 93 years old, Shim is still able to roll his wheelchair to visit his wife every day.

4. Story of Krishnan

Krishnan’s Story - Teacher

Krishnan is an Indian. He was born in Malacca in 1926. In 1948, he was admitted into the settlement and four years later, he became a primary school teacher, teaching English, Malay, and Tamil to students with leprosy. He still remembers that the children had English and Malay classes from 8 o’clock in the morning till 12 noon, then they had to learn their respective mother tongues from 2 p.m. to 4 p.m. Besides him, there were three other teachers who taught the mother tongue classes—a Malay teacher and two Chinese teachers. He said that some of the students were very clever, so he let them skip ahead to another class.

In his early teaching days, Krishnan only received 30 dollars per month. Pre-Independence, there was an allowance adjustment and his allowance was raised to 90 dollars. After Independence, there was another adjustment and he received 175.05 ringgit monthly.

He remembers that in the early days, it was very crowded in the Children’s Ward. At the settlement’s peak, there were about 250 boys and girls being educated there. Each ward could accommodate around 22 children. There was a mosquito net around each child’s bed, and the settlement authorities appointed an attendant to be the warden in the Children’s Ward, managing the children’s daily lives.

Every day after school, the children would take part in various sports activities such as football, basketball, and badminton. The annual Sports Day was a grand school event and the different teams were named after the former medical superintendents. There were four teams (Ryrie, Molesworth, Macgregor, and Goulding), and they used to have badminton, football and basketball competitions among the students themselves and also with the people from outside the settlement. Once a year, people from outside the settlement would treat the boys and girls who stayed at the dormitories to a Christmas party and presents. The school would also organize an annual concert at the community hall to entertain the patients who stayed at the chalets as well as the staff who worked in the settlement.

Many of his students found good jobs outside after leaving the settlement and never came back to visit him, but he is not worried about them.

“As long as they are happy, there is nothing else I want. I’m just passing the days away here,” said Krishnan lightly.

5. Story of Sinnathambhi

Sinnathambby’s Story – Male Nurse

Sinnathambby is a devout Hindu. Every morning he will pray to the gods to grant him a long life and good health. He is unmarried, and has an altar in a corner next to his bed where he offers fresh flowers to his God, Siva.

Sinnathambby is one of the few resident who, due to their excellent job performances, have had their statuses changed from “inmate worker” to “civil servant”. Thus, he is able to receive a 600 ringgit pension after his retirement. Born in Green Town, Ipoh in 1926, he was admitted into the Sungai Buloh Settlement during Dr. Gordon A. Ryrie’s term as medical superintendent. From 1940 onwards, Sinnathambby worked as a nurse in the settlement, and later on, he even became a qualified male nurse.

In the past, leprosy patients took Dapsone tablets or Sulphone injections, but with the discovery of the cure for leprosy, patients nowadays only need to take three types of medicine—Rifampicin, Dapsone (DDS) and Clofazimine (B663) to completely recover. They only need to go for regular check-ups and take the medicine that they are given; there is no need to be admitted for treatment.

“I hope that everyone will always smile and be happy. If you’re happy, I’m happy too! So, everyone must be happy!”

6. Story of Leng Siew Cheng

Leng Siew Cheng’s Story – “Jaga” (Security Guard)

There were more than 2000 resident of different backgrounds and races in the small Sungai Buloh Settlement community during its peak. Thus, basic peace and order had to be maintained. In the olden days, uniformed guards were responsible for the security of the settlement. These guards were strong male resident who, like other inmate workers, also received allowances for their work. All the inmate guards stayed at the two rows of police barracks located next to the Inmate Office, near the main gate of the East Section.

In 1960, Leng Siew Cheng was officially diagnosed with leprosy and admitted into the Sungai Buloh Settlement. In the beginning, he worked in the Malaysian Leprosy Relief Association (MaLRA) oil palm and rubber estates until the 13 May race riot in 1969. Then, he was ordered to stop work. After being unemployed for a year, he heard that there were vacancies for security guards within the settlement, so he applied and was hired. This job did not have any academic requirements; a strong, healthy body was enough. So, Leng worked as a “jaga” (guard) in the settlement until his retirement in 1996.

The guards worked in shifts to patrol a few important places in the settlement, including two main entrances (one located at the hospital side and the other at the East Section), the medical superintendent’s bungalow at the top of the hill, as well as the settlement’s reservoir. Besides that, the guards also ensured that those resident who wanted to go out of the settlement had obtained permission from the hospital authorities.

In those days, the patients were allowed to apply for leave. They were entitled to 21 days annual leave per year and anyone who wanted to apply for leave had to get permission from the relevant authorities. For a one- day leave, the patient could apply directly to the Chief Steward, but for leave that exceeded two days, he would have to apply to the doctor in charge of the clinic in the central or east section. Upon approval, the clerk at the Chief Steward’s office would issue a leave pass to the patient concerned, and particulars (such as the name of the patient, his registration number, chalet number, place of visit, and dates of departure and return) would be written on the pass. The pass would then be signed by the Chief Steward. The patient had to collect the leave pass from the guard on duty at the east gate. At the sentry post, all the things brought by the patient had to undergo sterilization at the sterilizing room located at the end block of the Administration Office in the east section. The patients had to come back by the date stated on their leave pass, and the pass had to be surrendered back to the guard at the sentry post for record purposes upon return from their leave.

At that time, there were 40 guards in the settlement. The guards consisted of one sergeant, one corporal, and one lance corporal, and all of them were under the supervision of a Chief Steward. In those days, the “jaga” with the status of sergeant was called “three stripes” by the patients, the corporal was called “two stripes” and the lance corporal was “one stripe”.

Ahmad bin Jaafar was admitted into the settlement in 1950. At that time, he was 22 years old. When he was chosen to become a guard, his monthly allowance was only 18 dollars. He started work at the lowest rung, and when he retired at age 70 plus, he had worked his way up to become a “three-stripe” (sergeant). (insert photos Ahmad)

In the late 1950s, a security guard’s job scope included fighting fires. The settlement had a fire engine that had been converted from a jeep. The fire engine had been given by the Civil Defense Department in 1954 for them to fight small fires. The guards had weekly fire-fighting training at the football field near the East Section.

Tan Hing is the current chairman of the Settlement Council. He had also worked as a guard in his younger days. He added that a guard’s duties also included checking and registering information about visitors who passed through the gates, helping the medical superintendent to find the resident suspected of wrongdoing for the purpose of interrogation, or bringing a visitor to see an inmate.

“If someone here was caught stealing, taking drugs, or gambling, after investigating, we would verbally report back to the Chief Steward, and he would make a full report to the Medical Superintendent. The Medical Superintendent would mete out a punishment in accordance with the severity of the crime. The punishments for minor offences were clearing grass and cleaning the drains. For serious crimes, the offender would be jailed in the settlement’s prison.”

The authorities provided the guards with some simple training, including fire-fighting techniques. When Tan was a guard in the 1970s, there were 32 guards in the settlement. Three teams of guards worked in shifts each day. They started at six o’clock in the morning, changing shifts every four hours, thus each guard worked eight hours a day. Eight guards were on duty every morning, with an extra two guards at night. The additional two guards were mainly for patrolling the settlement.

The guards who stood at the sentry post at the East Gate had to announce the time hourly. They used a metal rod to strike a metal plate hanging at the sentry post, and the sound produced would inform the resident of the time. One strike for one o’clock, two strikes for two o’clock, and so on.

In the settlement, the resident who were able to look after themselves would generally live in chalets allocated to them by the settlement authorities. The authorities provided the resident with raw rations daily and the resident would cook their own meals. Every day, suppliers from outside would deliver the rations to markets in the Central and East Sections. Then the section attendant (inmate workers) would collect the rations from the main market according to the number of patients under his supervision. He would send the rations to the food distribution centre where the patients were staying. The moment he arrived at the food distribution centre with a basketful of rations such as vegetables, fish, meat etc., some of the patients would already be waiting to collect their rations for cooking. The section attendant would then start dividing the food on the long table according to the number of patients under his supervision.

The section attendant would strike a metal blade, sounding “Dong! Dong! Dong! ” to alert those patients who did not realize that the rations were ready for collection. There were about 18 such blades hanging around at various food distribution centres at the Central Section alone.

The guards on duty wore khaki uniforms supplied by the authorities. They also received a baton, a pair of shoes, a hat, and a whistle. The guards were not civil servants, so they only received an allowance of 146 dollars monthly for their work.

Leng worked as a security guard till 1996, then he managed to get a job outside of Sungai Buloh, earning about 500 or 600 ringgit per month. He gave up this job after he met with an accident and was admitted to the wards. After recovering from the accident, while still in the ward, the cleaning company (Radicare) ran short of workers and agreed to employ him on the condition that the doctor’s permission was obtained. Leng was paid 650 ringgit per month. His duties included cleaning the corridors of two hospital blocks, sweeping, mopping, wiping the doors, etc.

“Some jobs are healthier, really! Seems like my belly has shrunk. If all I did was eat and sleep all day, my stomach would grow bigger. After working, my blood pressure is also not as high anymore.” However, the day before Chinese New Year 2012, Radicare dismissed him from his job, citing his advanced age as a reason for doing so.

Ahmad currently lives with his family at a Malay kampung (village) near the settlement. He is already 85 years old and has difficulty moving. His thoughts are incoherent, and he is now suffering from dementia. He was unable to answer any questions about his glory days as a “three-stripe”(sergeant). He is also unable to collect his monthly allowance of RM 230.33 that the government still gives; his wife collects it on his behalf. Over the years, the settlement has seen rapid development; three main gates leading to the entrance of the Sungai Buloh Settlement have been demolished. Those resident who used to work as guards are all elderly now, and their jobs have been taken over by a security firm provided by the hospital.

7. Story of Tan Hing

Tan Hing – Prison Guard

Section 16 of the 1926 Lepers Enactment Act gives a leprosarium’s medical superintendent the power to punish resident who flout settlement rules (such as by escaping from the settlement, fighting and quarrelling among themselves, or getting involved in illicit activities) with fines of up to ten dollars or jail sentences of up to fourteen days.

In the past, the most common issue faced by the medical superintendent was settling the disputes and conflicts of patients. He had the power to decide on the kind of punishment imposed, but lighter sentences could be dealt with by the chief steward.

There were four prison cells in the prison near the East Section chalets where the Indians resident were staying. Tan Hing worked there as a prison guard during his younger days.

Tan was born in Segamat, Johor, in 1941. After graduating from a Chinese secondary school, he helped his parents to tap rubber. When he was 22 years old, he suddenly discovered red dots on his body. His friend said that he had a skin disease and asked him to get it checked out at the Johor General Hospital. At the end, Tan was diagnosed with leprosy and he stayed home and took medication for two years. Later, the doctor informed Tan that the Sungai Buloh Settlement could provide better treatment, so in 1965, Tan was formally admitted into the settlement.

He started working as a security guard in 1972. After being a guard for two years, he was transferred to become a prison guard. The prison at the East Section of the settlement was for incarcerating offending resident or criminals from outside who had leprosy. At that time, there were four guards at the prison, and they received allowances of 170 to 180 dollars, which was higher than what the security guards received because they were paid by the Prison Department in Kuala Lumpur.

The difference between a normal prison and the prison in Sungai Buloh was that at Sungai Buloh, there was a small building in the middle of the prison. In it was a mini ward that could accommodate four hospital beds, so that the prisoners could receive regular medical care.

Tan said, “The inmate prisoners in the prison had quite a lot of freedom. They could approach the guard to help them buy extra food and cigarettes. If there was a movie showing in the settlement, the prisoners could watch together with the other resident with their hands cuffed together.

In 2007, the old prison with an almost 80-year-history was demolished to make way for the Health Ministry’s development of the East Section.

8. Story of Ng Sai Moi & Kwong Kwai Tong

Ng Sai Moi (Inmate Nurse) and Kong Kwai Thong’s (Inmate Dresser) Stories

Ng Sai Moi is from Gopeng; she was born in 1922. She was 12 years old when she came to the Sungai Buloh Hospital for treatment. She started working as a inmate nurse when she was 18 years old. Later, she attained a “red-belt” level in nursing after she passed the in-house healthcare exams and picked up some English. She worked for 62 years until she retired at the age of 80.

In the past, the inmate nurses and dressers (inmate workers) were divided into four categories. Nurses or dressers without any colour bands on their sleeves were considered as new intakes. Next in rank were the green, then blue, and finally red colour bands. These different-coloured bands were tied around the sleeves of their uniforms. However, they were not recognized by government hospitals outside as most of them did not have qualifications.

Another dresser (医生仔), Kong Kwai Thong, was only a white-belt ranked male nurse as he did not have much education and he couldn’t speak English. He worked as an inmate dresser from the time he was 15 until he retired at 80. His job was different from Ng Sai Moi’s because he had to help sponge the patients, bandage their wounds, and tidy up the beds. Twice a week, he would go to the pharmacy and dental clinic located at the East Section to give Sulphone injections to patients who stayed at the chalets and to the students from Travers School.

At the settlement’s peak, there were fifty or sixty inmate nurses/dressers responsible for over two thousand patients. Eighty-six-year-old Kong held the lowest rank in nursing, so he only receives a working allowance of RM175.05 per month whereas 90-year-old Ng (who still lives in the Female Ward) continues to receive her RM202 monthly allowance.

In the past, the government would send a team of tailors to the settlement to take the measurements of all inmate workers and supply them with ready-made uniforms. However, around the late 1980s, ready-made uniforms were no longer supplied to inmate workers. Instead, all inmate workers were given 12 meters of cloth, and a stitching allowance of RM 145 was paid to them.

Till this day, Ng Sai Moi still keeps a white nurse’s uniform that she sewed herself. We discovered that the uniform had been mended many times, and even though it was a little shabby, it bore testament to her more than a half-century’s service to the patients.

Like Ng, Kong has also kept his uniform. What is unusual is the name tag and Health Ministry’s badge that are sewn on it.