There is an abundance of green in the aptly named Valley of Hope, a picturesque corner of Sungai Buloh.
Nurseries thrive here: I drive past rows of neatly potted plants for sale, or cactuses and colourful blossoms put on display. The place is a horticultural paradise. People visit from all over the country just to purchase these greens.
Looking at this tranquil little Eden, it is difficult to believe that its origins lay in dread and disease.
Decades ago, this Valley housed what used to be the largest leprosy settlement in the British Commonwealth. Housing almost 2,000 patients in its prime, the place was a self-sustaining community for leprosy sufferers, allowing them to live with their disease away from a society that shunned them.
The settlement is a shadow of its former self now, with most of its residents having left. Many of the old buildings that once defined it have been taken down.
Some of the community’s old residents, however, remain. Among them is Leong Chee Kuang, 75, the local Secretary of the Patients Council. I meet up with him in his office in the Valley of Hope’s community Hall one Saturday morning.
“I wouldn’t say I ‘enjoy’ my life here. But life here is a lot easier. It’s not a rat race like outside,” Leong says.
A former leprosy patient, Leong has lived in the Valley for over forty years now, helping the few patients still warded here.
A former leprosy patient, Leong has lived in the Valley for over forty years now, helping the few patients still warded here. Broad-shouldered, with greying hair, the grandfatherly Leong has a stern face, but a patient disposition. He is slightly hard of hearing: many of my questions are replied with a loud “Hah?” and the occasional request to translate in Chinese. His mind however, remains sharp, and his answers are fluid.
Adjusting his glasses, Leong tells me how he first came to the settlement when in his twenties.
“There was something wrong with my limbs. There was a pulling in my nerves, and a loss of feeling in some parts of my body. There are different types of leprosy: some attack the nerves, some attack the skin: mine attacked my nerves, so my muscles felt loose, and there were contractions in my fingers,” Leong says.
Visiting a clinic in his hometown Kemaman, Terengganu, Leong was diagnosed with leprosy. It was 1957: a year most Malaysians associate with Merdeka, with freedom. Leong, however, feared that year would spell the end of his liberty.
“I thought coming here would be the end of the world,” Leong reminisces. “Living with people in this fenced-off area, unable to go anywhere…I thought it would be hell.”
“Leaving my family was difficult. They were very sad, I was their only son.”
After coming to the settlement, however, Leong found himself among people from all over the country, many from different races and religions. It was a diverse community, united by a mutual affliction.
“It was a change of environment. It was a new world. Once you stay here, you become much happier. You have friends, you have a school to go to. Outside, people are scared of you. Here, we all have the same fate, so it was easier to mix around,” Leong said.
The leprosy settlement functioned as a microcosm. People came from all over Malaysia to live in Sungai Buloh. Patients went to a community school and contributed their skills in various jobs. Some fell in love and got married.
When cures for leprosy emerged in the 1970s, many of the patients once more joined the world outside. But Leong was not one of them. Having grown attached to the settlement, he decided to stay. Today, around 200 former patients remain in the settlement, while development has parcelled off parts of the valley for new buildings and new life.
Caring for “the unclean”
In 1926, the Leprosy Act was enacted by the British government in Malaya, restricting leprosy patients from mingling with society, and denying them their basic rights. These draconian laws were designed to protect the general population.
Before cures were developed, leprosy was seen as a terrifying disease, a punishment from God. Its victims often suffered cruelly disfigured faces and limbs: this, combined with a myth that the disease was severely infectious, led to lepers being shunned and ostracised, called “subhuman” or “unclean”.
The afflicted were shipped to isolated camps in places such as Pulau Jerejak (1871), Pulau Pangkor (1903), Setapak, and a leper asylum in Circular Road, Kuala Lumpur (now Jalan Tun Abdul Razak). Life there was hellish, with many patients longing for death or escape from the poor conditions.
In 1930, the Sungai Buloh settlement was officially opened. It was the second largest leprosarium in the world at the time.
In 1922, Dr. E.A.O. Travers, a high-ranking British health official in Setapak, found himself sympathizing with the lepers. In his book The Treatment of Leprosy at Kuala Lumpur, Federated Malay States, he wrote: “Life in the asylum was a dull and depressing business, as it would inevitably be among a community carrying out what was practically a life sentence without employment or enjoyment.”
Dr. Travers lobbied for better conditions, and in 1930, the Sungai Buloh Settlement was officially opened. It was the second largest leprosarium in the world at the time. Situated about 25 km away from Kuala Lumpur, the settlement was located in a lush valley, with several streams running through it.
It was more humane than previous conditions. Initially however, the settlement still resembled a prison more than a sanctuary. A wide barbed wire fence surrounded the place, a grim deterrent to all lepers thinking of escaping.
But as the years went by, the patients in the settlement built lives of their own, learning to thrive in quarantine. New treatments were also developed to combat the scourge of leprosy. Still, it was hard to find acceptance outside the confines of the community:
“Last time, the stigma against leprosy was very strong,” says Leong. People would not entertain you if you had any apparent sign of leprosy. If you wanted to go to a coffeeshop, or take public transport, they would refuse to take you. It was harsh.”
In 1969, the Ministry of Health launched the National Leprosy Control Programme. The Sungai Buloh Settlement would no longer admit new leprosy cases unless doctors felt the patient’s illness serious enough to warrant admission. This was followed by developments in leprosy prevention and cures in the 1970s.
The fence was finally taken down. The world outside ventured in, including new workers.
“When outside nurses came in, that meant they were less scared of the disease,” says Leong. “And they could go out and spread the news that we were not contagious. They would actually go into the wards: in the old days, no one would even dare to go in!”
Life in the settlement
According to Leong, life in the settlement was very similar to regular life.
“In the beginning, all jobs here were done by patients. They were given allowances: there were people working as attendants, grass cutters, they were called ‘inmate workers.’ Even some of our nurses were inmates,” he says.
The leprosy settlement had its own rules and regulations, social clubs, and law enforcement. It was a multi-faith community, with four churches, a Hindu and a Buddhist temple, as well as a surau.
Leong said older patients would stay in wards, while young students stayed in dormitories. Patients of his age, however, stayed in specially built chalets, which were separated by gender and could accommodate about three people.
Ward patients were served three meals a day by nurses, while chalet residents were given rations to cook for themselves every morning. After dissatisfaction with the repetitive nature of these rations, however, the chalet residents pressed the government to give them cash allowances for their own food instead.
Leong took up photography, and offered his services to patients. “Whenever anyone needed to change their IC, I would help them take photos, because they couldn’t go out to studios,” he says.
At one point, the settlement even had its own currency, to prevent ‘infected’ money from spreading outside. This lasted for about six months, before microscope tests failed to pick up any trace of infection on their notes.
“Even letters we sent outside had to be sterilised first! We had a machine just for that,” Leong says.
Patients would entertain themselves by playing games like football and basketball. After the cure was discovered, however, they could go on trips to the cinema or the seaside.
“There was a lot of intermarriage. A few children were born, with nothing wrong with their bodies,” says Leong.
Romance often bloomed between the patients. “There was a lot of intermarriage. A few children were born, with nothing wrong with their bodies,” says Leong.
However, because leprosy was still not fully understood, the babies would be taken away soon after birth. The mothers were not allowed to feed them milk, and would only be allowed to see them once a week. Some of the babies were adopted by families in the outside world. Two researchers, who had published a book about the Sungai Buloh settlement called The Way Home, have set up a website to try to help these adopted children connect to their unknown parents.
Leong himself found love, marrying a patient from Indonesia. They now have a daughter who is a kindergarten teacher. “It was love at first sight,” he jokes.
Lee Chor Seng, 61, is another former patient who still lives in Sungai Buloh. Lee lives in the same house that he was allocated when he arrived as a young man, around 18 years of age. Lee now rents out a nursery on his land and sustains a small income from the rent.
Lee, a former clerk, told me that he thought it was unfair that the government had only paid an allowance to the patients for their work, since they did not have any access to a retirement fund and could not rely on their children for support. “Some people come to give us ang pao at New Year, some good people,” he says.
Lee also blamed the government for moving some of the remaining patients, when some of the settlement land was redeveloped. As well as the nearby modern Sungai Buloh hospital, a part of the land has been developed as campus accommodation for UiTM.
There will soon be an additional development. In April 2011, 78ha of the 230ha leprosy settlement was officially declared as a national heritage site. The government now plans to build a museum about the leprosy settlement.
“The most important thing is this,” says Lee. “We don’t want the government to disturb us anymore. After they build the museum, we want to be left in peace.”
What used to be
Most of the settlement is changed: now, a loose cluster of modern, freshly-painted structures stands where its old buildings used to. However, some of the original structures have been left in tact: including a few ghostly wooden structures.
Hopping on his motorcycle, Leong bids me to follow him in my car as he takes me around, pointing out the ghosts of buildings that used to be.
“This was the school,” Leong said, getting off in front of a sturdy white building. “There were about 200 students, from Standard 1 to Form 5. The people who taught them were also patients.”
“There’s where we used to line up to take our medicine twice a week,” he points at a medical facility nearby.
We visit one of the local churches, and Leong points out the chalets he used to live in. These are mostly occupied by foreign workers now.
Leong tells me that with many leaving the settlement after being cured, he sometimes felt very lonely.
“There used to be two thousand people here. Now there are only two hundred, and most of them are old already. There used to be a lot of activity. There were cinema shows here every week!” Leong reminisces as he shows us the local hall. The hall, opened in 1959, is mostly used to hold weddings and social events now. But its movie projector, dusty and faithful, still stands in a cobwebbed room above.
Leong says he still keeps in touch with some of his friends who have left, with a reunion usually taking place every year. Most of them have moved on to various trades, he tells me, some even migrating overseas.
A little further up the road, there is now an AIDS and drug rehabilitation centre, as well as a large, modern hospital. To this day, Sungai Buloh continues to be a place of recovery and treatment.
When the settlement tour is over, it is time to leave. I shake Leong’s hand, and he wishes me well. I learn that today was actually his day off: Leong chose to spend it, however, in his office showing a stranger around.
I ask Leong if he’s ever thought of leaving the Valley of Hope, but he shakes his head.
“It’s a Twilight Zone,” Leong quipped. “Once you’re used to this place, you don’t want to go out.”
Words by Terence Toh. Photos and additional research by Ling Low. With special thanks to Tan Ean Nee, co-author of The Way Home.