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In the past, lepers were often forcibly quarantined. This is no longer the case. No one is compelled to live in Jongaya. However, many people here have been driven away from their original communities. Others feel shame and leave home to seek refuge with others similarly afflicted.

Leprosy is a bacterial disease that affects the skin and peripheral nerves. Leprosy remains endemic in 91 countries around the world, with 738,284 new cases detected globally in 2000. Around the world, several million people have permanent disabilities and disfigurements related to the disease.

Across Indonesia, the rate of prevalence is slightly under one new case per 10,000 people. This means that there are approximately 20,000 new cases detected each year. However, the rate is considerably higher in some regions, particularly East Java, North Maluku, and South Sulawesi. Approximately 10% 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 2000 people. Of these, about five hundred have suffered from this disease. Most of the others are the healthy wives, husbands, and children of those affected. All the residents with leprosy have been treated for their disease 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 make-shift carts.

As leprosy settlements in Indonesia go, Jongaya is well located and has good facilities. Located on the edge of town, it has electricity and access to water. People here are more likely to be able to work or beg successfully than in remote rural areas. There, people live in some of the most squalid circumstances and dire poverty of anyone in Indonesia.

In the past, lepers were often forcibly quarantined. This is no longer the case. No one is compelled to live in Jongaya. However, many people here have been driven away from their original communities. Others feel shame and leave home to seek refuge with others similarly afflicted.

Living near a large, prosperous city also makes begging more profitable. Some residents of the Jongaya leprosy settlement in Makassar, particularly those with amputations and serious disfigurements, claim to be able to earn up to several hundred thousand rupiah a day, ten times the minimum daily wage in the region. However, begging can be a physically demanding and dangerous occupation. There is significant risk of injury, particularly for those who move from place to place in carts.

In addition, beggars are often harassed by the police. Recently the city of Makassar enacted regulations forbidding begging, particularly in the streets. In response, with the support of Permata, a group of people with leprosy-related disabilities presented a petition to the local government assembly, which demanded that the government make itself responsible for the welfare of those prevented from earning a living by begging. So far, there has been no formal response to the petition.

One of the main goals of Permata is to eliminate discrimination against people with leprosy. One of the organization’s projects trains people with leprosy to interview each other and write up their personal experiences in autobiographical form, with the goal of publishing these stories to increase awareness of the issues that people with leprosy face. Mursalim’s story, published below, is one of more than fifty personal accounts that have been collated so far.

One of the most significant achievements in Jongaya is a self-care group, established by people with leprosy-related disabilities to support each other in practices that protect their health and well-being. One of the most effective interventions practiced by the members of leprosy 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.

In addition, the group established a micro-credit savings and loans system. Members make small, regular savings, and after a set period they are able to borrow money to establish, maintain, and expand small businesses. The cooperative was initially established with funds provided by the Netherlands Leprosy Relief organization. However, it is now self-sustaining, relying on repayments and savings to fund loans. Members have used funds, for example, to buy a computer and printer to rent and to buy a refrigerator to sell cold drinks.

Not all self-care groups in Indonesia have been as successful as the one in Jongaya. They often fail to reach the tipping point where enough people become convinced of the value of the system that it can be self-sustaining. Once members see their health improving, or they borrow money to set up a successful business, they usually become strong advocates and encourage others to join.

At Jongaya, many people with a similar affliction live in a single community. This works in favor of establishing a self-care group. It is harder to establish a successful group when people affected by leprosy do not live in close proximity to each other. In such cases, the cost and difficulty of travel may work against the success of a group.

Another issue is that participating in a self-care group means acknowledging, more or less publicly, that one has had leprosy. Where there is stigma and denial, people may be reluctant to announce their condition in this way.


Andi Amin Reffi

Makassar, South Sulawesi


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“Leprosy affects you slowly. I don’t know when I first contracted the disease. When I was still at school, I had red splotches on my body that wouldn’t heal. Then I had small patches of hard, dry white skin. When I touched the hard white patches, I couldn’t feel anything.”

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 high-caste Bugis, 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, others that 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 multi-drug therapy (MDT) that they have now is much better. If a patient follows MDT for six months or a year, they 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.

In the 1970s, I was prescribed Dapsone. I didn’t take it regularly. I only took it when I was feeling bad. That’s not the proper way to use it. You’ve got to go on taking it, even if you don’t feel sick. I didn’t know that at the time.

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 that 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 that 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 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.

It’s different here. Back in the village, a person who has had leprosy often feels like they have to hide themselves away. They wouldn’t be brave enough even to show their faces in public. You can lead more of a normal life here. It’s a community. These days, the majority of people here don’t have leprosy. A lot of lepers have healthy partners and children. Out of the 2000 people in the settlement, about 600 have had leprosy. Everyone here is used to dealing with people who’ve had leprosy and have disabilities.

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 damaged. 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’ve 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. 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. At one point, it went up to sixty people each week. Now it’s gone back down to about thirty. Some people do it at home now instead of coming to meetings. We meet every Monday. We sit together and soak our feet. People who’ve been in the group for a while 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 that 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 5000. 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. It doesn’t cost that much. It’s all made locally, stuff that you can buy around here. .

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. Jongaya is probably one of the better settlements in South Sulawesi. It’s close to the big city, so there are more opportunities. It’s much harder for people with leprosy in the rural areas. A lot of the men at Jongaya work in town as parking attendants. Many people with more serious disabilities beg, at least sometimes. But quite a few people here run a small business of some kind.

Last year, the self-care group received some funding from the Netherlands Leprosy Relief to set up a microfinance credit co-op. The co-op is open to anyone who comes to the self-care group regularly. If you want to borrow money, there are a few extra conditions. It’s meant for people who are already running some kind of business, and the loan has to be used to develop or expand the business. There was one woman who sold drinks: she borrowed a few million to buy a fridge to keep them cool. Another woman borrowed some money to buy a computer and printer to rent out when people here need to print out a letter or document. And there’s a married couple who run a stall selling vegetables and basic foodstuffs. They ran into trouble, and borrowed money to restock and get started again. Everybody who joins the credit co-op makes a commitment to saving a certain amount per month: if you make a commitment to saving Rp 100,000 per month then you can borrow up to Rp 1,000,000, so long as you meet the other conditions. If you save more, then you can borrow more. Since the credit co-op started, more people have been coming to the self-care group: they can see that there are a lot of benefits for the people who join. They realize that working together benefits everyone.

Even so, there’s a limit to what we can do. It’s always going to be hard for people who have had leprosy, because of the way other people react to it. If people go on seeing it as a punishment or a curse or something disgusting instead of a medical condition, it’s always going to be hard for us to live in society. People need to realize that it’s just a medical condition and that we are just normal people like everyone else.



Makassar, South Sulawesi


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“I don’t beg. I just push myself along the streets in my cart. People wind down the windows of their cars and give me money. They feel sorry for me. But I don’t beg. I don’t ask for anything.”

I never come home with less than Rp 50,000. More often than not, I come back with Rp 100,000. I go out every day at seven in the morning and come back in time for the midday prayer. Pak Mursalim takes me into town on his motorbike every day. I pay him Rp 10,000 for his trouble.

My leg was amputated in 2002. It got twisted and dried, and got in the way. The doctors said I’d be better off without it, so they cut it off. Now I’ve got a false leg. I can walk with it. It hurts and I get tired, but I can walk with it. I don’t wear it when I go into town. People feel sorry for me because I have a leg missing. But otherwise I’m quite healthy. My hands and my foot are OK. I haven’t been to the hospital since the amputation. I haven’t seen a doctor or been to the community health center.

I try to stay healthy so I can go out onto the streets. Some guys go out the whole day, but they wear themselves out. I’ve got to pay for the rent on this house, and I’ve got to pay for food. The only help I get from the government is subsidized rice. I can get 25kg a month for a bit more than Rp 20,000. But it’s terrible rice. It often has stones and insects in it.

I’ve got two children. The youngest is Jumardi. He’s in first class at junior high school. Yes, he’s healthy. I’ve been married four times. All my wives were healthy. I’ve just separated from my fourth wife. I used to give her all the money I took. She just spent it all, and not always on the right things. That’s why I haven’t saved any money. My wife spent it all.

There is a new government regulation that says you aren’t allowed to beg on the streets or at traffic lights, or in any public places. You can only beg outside mosques and churches.

I’ve never had trouble with the police or the Army. The police and soldiers sometimes give me money. The only people I’ve ever had trouble with are from the social welfare agency. They’ve taken me away a few times. They don’t do anything, they just drive me back to Jongaya and leave me here. They just tell me that I shouldn’t beg. I tell them I don’t beg, people just give me money. I don’t ask for it.

When the new law came in, we staged a demonstration. We went to the regional assembly to protest. They said we weren’t allowed to beg. We said we’d stop begging if they provided Rp 50,000 a day as a social security payment. We said we’d take a minimum of one million a month. They say we can’t beg, but they don’t offer any solution. What are we meant to do instead?

I found out about the demonstration from my other friends who go around the city in carts. We went to the assembly in a bus. We all paid our own fares. I didn’t meet any of the members of parliament. A few crippled lepers went in to meet them, but only the ones who had been to school. I never went to school.

What can I do if I can’t beg? I can’t work. I can’t work as a laborer with a missing leg. I can’t feel my feet or my hands. If I don’t look after myself, I mess them up. I don’t hurt my hands when I push myself around in my cart. I use a stick to pull myself along the ground on the right side and push myself with my left leg. I have a shoe so I don’t hurt my foot.

If I had the capital, I’d set myself up in business. I could set up a business making bricks. But I don’t have the capital. I don’t go to the self-care group. My feet and hands have been clean for a long time. I wouldn’t have time to go to meetings in the mornings; that’s when I go into town.

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