In Makassar, Lepers Deal With Stigma, Together
Leprosy is a bacterial disease that affects the skin and peripheral nerves. It remains endemic in 91 countries, with 738,284 new cases detected globally in 2000. Around the world, several million people have permanent disabilities and disfigurements related to the disease.
In Indonesia, the rate of prevalence is slightly less than one new case per 10,000 people. This means there are approximately 20,000 new cases detected each year. In some places, though, the rate is considerably higher, particularly East Java, North Maluku and South Sulawesi. Approximately 10 percent of leprosy patients in Indonesia have already suffered significant nerve or other damage prior to the diagnosis and treatment of their disease.
The Jongaya leprosy settlement in Makassar, South Sulawesi, is a community of 2,000 people. Of these, about five hundred have suffered from the disease. Most of the rest are the healthy wives, husbands and children of the infected. All the residents with leprosy have been treated and are considered cured. Even so, many have serious disabilities and horrible disfigurements. Some have had limbs amputated. Others are blind. Many wear prosthetic limbs. Others push themselves around in makeshift carts.
One of the most significant achievements in Jongaya is a self-care group, established by people with leprosy-related disabilities to support one other with practices that protect their health and well-being. One of the most effective interventions practiced by the members of group is the care and prevention of wounds to the feet. This is achieved by sitting together as a group to soak feet in water, then carefully scraping them with a rough stone and oiling them with any readily available vegetable oil.
Andi Amin Reffi
For a long time I didn’t know I had leprosy. I didn’t want to know. Sometimes the kids at school saw the sores and the ugly white patches on my body. Sometimes they called me a leper. If they said it to my face, I’d smack them. My family knew there was something wrong but they never talked about it. My family is part of the Bugis high-caste, descended from one of the royal families in the village. For an aristocratic family like mine, leprosy is terribly shameful. Some people believe lepers are cursed by God, while others believe it comes from black magic. It’s something unclean.
I was finally diagnosed in the late 1970s. Medical care wasn’t as good then as it is now. Back then, the drugs for treating leprosy were much less effective. A lot of strains of leprosy were resistant to the medicines they had, and not everyone responded well. The multidrug therapy they have now is much better. If a patient follows MDT for six months or a year, he or she can be completely cured. If people with leprosy are diagnosed early, they may not even suffer from complications. They can be completely cured and lead a normal life.
When I graduated from school, my parents used their influence to get me a job at the governor’s office. Most people didn’t know I was sick. I had a high school diploma, quite a good qualification back in the 1980s. Any sort of position at the governor’s office, even a menial one, was very prestigious.
As part of the process of becoming a government employee, I had to have a medical examination. When the doctor examined me, he saw I had leprosy. I was fired from my job immediately. Pretty soon, everybody knew why.
My family didn’t kick me out. I left by myself. Bugis people have a very strong sense of pride. I didn’t want to bring shame on my family. I just wanted to disappear from their lives and move away as far as I could so that I’d be somewhere where no one knew me.
The next few years of my life were a nightmare. It’s a blur now. I came to Makassar to hide in the big city. I did anything I could to survive. Sometimes I worked, sometimes I begged. Sometimes I stayed in rented rooms or with friends or even out on the streets. During that time, I didn’t have any contact with my family. I didn’t look after myself. I didn’t wash properly or change my clothes. I let myself get filthy. I thought I had a revolting disease, so I didn’t care what happened.
Eventually I came to the Jongaya leprosy settlement. No one is forced to live here, you know. It’s just much easier to live with other people who have suffered from leprosy and who are used to dealing with it. Around here, there’s no need to be ashamed, even if you have amputations and other disfigurements. Around here, even people with serious leprosy-related disabilities can work or run a business.
You can see on the main road here, there are small shops and food stalls run by people who have had leprosy. Of course they only sell to other people from the settlement! Normal, healthy people from the outside aren’t going to buy food from a leper, are they? It doesn’t matter if the person has been treated and isn’t infectious, and the food they are selling is wrapped in sterilized plastic: no one’s going to buy it. No one even wants to touch something that’s been handled by a leper. Sometimes shops refuse to serve someone who has had leprosy — they don’t even want to touch a leper’s money.
Back in 2006, we set up a self-care group. One of the big problems if you’ve had leprosy is keeping your hands and feet from getting injured. Many of us have lost feeling in our hands and feet. If you stub your toe or tread on a nail, you may not even feel it. A lot of the women hurt their hands in the kitchen. If they aren’t careful, they can burn themselves and not even notice. If you get wounds like that, they can become infected. Your hands and feet can become gangrenous. That’s why so many people who have had leprosy have amputations.
Leprosy can make your skin dry out, too. When the skin on your feet dries out, it can get cracks, which can let the dirt in, and that can lead to infections. One of the best ways to prevent injuries to your feet is by soaking them in water. It’s really quite simple. You soak your feet in water for half an hour until the skin becomes softer, and then you rub the dry calluses with a stone. Then you apply coconut oil to keep the skin supple and to keep the moisture in.
It sounds simple, but it really does work. The trouble is that people can’t be bothered. People say they are too busy working and they don’t have the time. Or they don’t really believe that it works.
So we set up a self-care group, which we began in 2006 with just four people. Other people around the settlement began to see that it worked, so more and more people started joining. We meet every Monday. We sit together and soak our feet. People who have been in the group for awhile explain how it works to those who have just joined. We just use water and soap and oil, but it works better than anything else. Some people had really bad wounds, so bad the doctors said they were going to have to amputate. After they started soaking regularly, they got better.
At first, we just used buckets for soaking our feet. Last year we built special concrete troughs. Every week, we have an arisan , a kind of lottery. Each person who comes to the meeting puts in Rp 5,000 (55 cents). Every week, taking it in turns, a different person gets to keep the pool of money. That person is responsible for buying the soap and the oil for everyone in the group.
Treating injuries and keeping them clean is vital. It can make the difference between losing a toe and keeping it. But avoiding injuries in the first place is just as important. That’s not always easy. Good shoes are important, but the type of work you do makes a big difference.
With some types of work, it’s really difficult to watch your feet and your hands to make sure you aren’t damaging them. But we don’t have much choice. If people with leprosy have any sort of job, it’s likely to involve manual labor. It’s pretty hard to make sure you aren’t hurting yourself when you’re working in the fields.
This story first appeared in “Invisible People: Poverty and Empowerment in Indonesia,” published by the PNPM Support Facility, a government of Indonesia, multidonor partnership for reducing poverty through community action. Permata, an Indonesian leprosy advocacy organization managed entirely by lepers, runs a Web site at www.permata.or.id.