A quest for belonging: My glimpse into leprosy culture

I'd never thought much about leprosy before my friend Chihui invited me to tour a leprosarium during my recent trip to Kuala Lumpur, Malaysia, but our tour set my mind to spinning. For nearly a century, the Sungai Buloh leprosarium has housed people with leprosy. It’s common knowledge that lepers have been ostracized and isolated throughout history. I've read Bible stories dozens of times about Jesus healing leprosy's "unclean" victims. But who in recent history had leprosy, and how did it redefine “belonging” for the rest of their lives?

Reading up ahead of time, I saw that Sungai Buloh (also known as the National Leprosy Control Centre) has been nominated as a UNESCO world heritage site. Completed in 1930, this compound was the brainchild of Dr. E.A.O. Travers, who sympathized with leprosy patients whom he saw confined in inhumane asylums as British colonizers enforced strict laws locking them away. Sungai Buloh was far ahead of other institutions at providing quality care with dignity for lepers, and furthering research on their disease and its treatment. It originally had 600+ buildings over 562 acres, with 2440 patients at its peak – the second biggest in the world. Today, though a medical university has built over much of the property, it remains impressive.

This self-contained community had its own post office and judicial system, with patients serving “as clerks, typists, teachers, nurses, carpenters, police officials, fire brigades, general workers and other roles.” Here, leprosy patients could settle in independent homes, grow and sell produce, receive education and skills training, socialize with other residents, and democratically run their community. Chihui, an avid gardener, first encountered Sungai Buloh when buying plants from a resident. A long line of nurseries borders the lush green property, supplementing residents' income.

We were privileged to have an outstanding tour guide devote over two hours to us one Sunday afternoon. (It’s only open on Sundays.) Cera refused our tips at the end of the free tour; it’s a labor of love for her. A Kuala Lumpur local, she offers tours in both English and Chinese. 

Cera shows us a scale model carefully crafted from clay by a resident

When we arrived, I thought there were a few other visitors, but I quickly realized they were affiliated. One, a new volunteer in training, discreetly photographed Sarah with us throughout the tour and sent them to us afterward. The other, an energetic and gregarious man, chatted with us in clear English. I was shocked when Sarah introduced him as one of the patients, Uncle Vincent Yeoh. (He created the clay model shown above.)

We ran into Uncle Vincent again at the end and asked him for a photo

“Wait, he has leprosy?” 

“Well, he’s cured now, but he arrived from Indonesia when he was ten and now this is his home.” 

In the mid-20th century, scientists discovered several drugs with some efficacy at combating leprosy. By the 1980s, they established a multi-drug therapy still used today. If patients started early enough, they could be cured after six to twelve months of a drug regimen now available for free from the WHO. While some residents at Sungai Buloh experienced significant disfiguration and/or amputation, others retained a fairly typical appearance. But with an incubation period of 1 to 20 years and lingering social stigma, leprosy is often not caught early enough. And even when it is, many like Uncle Vincent discovered that mere recovery was not sufficient for re-entry. 

Some relatives made the former patients feel like an unwelcome burden through actions like burning the returnees’ sheets after use. Cera says Chinese-origin communities felt particularly nervous about returnees. Today, 96 retirees remain, choosing to finish out their lives in the place they once lacked the freedom to leave. Here, they are valued members of a close-knit group, with their own homes, hobbies, and histories. 

One exhibit told people’s arrival stories. Most leprosy patients discovered their infection in childhood, between roughly ages 8 and 15. Leprosy (aka Hansen’s Disease, a skin infection) can’t spread except after a year or two of close contact, but people used to believe it much more contagious. Cera told us about Mr. Nordin from Pahang, Malaysia, who remained in his village throughout secondary school (years after his diagnosis) without the disease spreading to any of his friends or family. Still, community pressure could be intense, and in some cases police rounded up patients to bring them here. Some families forcibly took their children to the center. In other cases, parents wanted to hold onto their children and cover up their illness, and it was the children who snuck out. Some journeyed for weeks from remote parts of Malaysia and Indonesia, and many never saw their families again. 

We got a special tour of the art gallery, which featured many paintings reflecting on residents’ transitions to the leprosarium. I arrogantly assumed it would be on par with an elementary school hallway, just trying to give residents a pastime and a bit of art therapy to process their feelings. Their creativity, skill, and passion surprised not only me but also their teachers. One resident painted a picture of the day she arrived, when she felt distraught, abandoned and unloved by her family. Looking back, though, she recognized her family’s love displayed in her last breakfast with them – a bowl of noodle soup. Another painted her father walking away barefoot, having giving her his only pair of shoes on arrival. One woman whose hands were amputated still painted vibrant scenes and still life images, with an assistant to color in her outlines.

The bouquet and sunflower paintings are by the woman with stubs for hands 

Cera maintained a cheerful tone throughout our tour of what's been nicknamed the “Valley of Hope." I think the name is apt. This was a huge step forward in institutionalizion. Sungai Buloh deserves recognition for helping patients know acceptance and choice, finding purpose in their daily lives as well as in contributing to a cure. But even with caring administrators, dignity, medical treatment, and a close-knit community, I can't imagine the residents' trauma and sorrow. There were elements of a dystopian novel in this sunny, pleasant village. 

Across many ethnic groups and religions, the residents’ shared medical condition and stigma brought unity to the extent that many intermarried. That brought us to the saddest part of the tour: hearing about their children. While marriage among the residents was welcomed, for decades any children they bore were placed in “welfare homes” in a misguided effort to protect their health. The parents had a year to visit weekly and recruit friends or family to adopt their newborns, but most children ended up in closed adoptions with strangers. Researchers wrote a book called "The Way Home" and started a website to help parents and children reconnect, but many parents had already passed away. How heartbreaking that young people torn away from their parents and siblings would one day have their own children needlessly torn away from them. Starting in the mid-1980s, around when the cure was established, the policy banning children from Sungai Buloh was less strictly enforced, and some inmates managed to hide their children when officers came around to check.

Back at home, I found an interview with one resident of 40+ years. Leon Chee Kuang, a leader among the ex-patients, arrived in 1957 as a 20-something. His words sum up the impression that I took away with me.

I thought coming here would be the end of the world. 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. 

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. 

I wouldn't say I 'enjoy' my life here. But life here is a lot easier. It's not a rat race like outside.

Photo from https://poskod.my/features/the-valley-of-hope/

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