No More Hiding - Husaini's Story

In Husaini's one-room hut a baby lies half asleep in a hammock made of bed sheets hanging from the rafters. She gurgles quietly and Husaini pushes the cotton sheet to reassure his daughter of his presence.  In the corner his wife sits on the floor surrounded by an array of colourful bowls, crushing spices and descaling fish.  She pushes the discarded pieces through the cracks in the floorboards, into the river a few inches below. Husaini's life in South Kalimantan, Indonesia, is simple. He lives and works on the river, fishing for shrimp from late in the evening till dawn.  He takes good care of his wife and young children.  As he limps along the wooden platforms connecting the houses on the river, people wave at him, or stop to chat. They know him as the man who set up the baby clinic, the man who attends important government health seminars in the town. They don't seem to remember him as the man who hid in his hut for years, or the man who would tuck his sarong round his legs so no one could see the wounds he was ashamed of. 

Husaini caught leprosy as a child but only received a proper diagnosis and treatment years later. Slowly he lost the feeling in his legs and hands. After repeated injury, a severe ulcer developed on his right foot. Being both resourceful and desperate, he decided to amputate part of his numb foot himself. It didn't help. He was left with a painful infection in his bones, and could no longer walk easily. So for years he stayed inside his hut. `Whenever people came to visit me, I had to sit as if nothing was wrong with me: Husaini says. Few people knew why he couldn't walk, and why he didn't talk to others about his life. I lived with it until a man came and offered me a friendship which brought me my dignity back so I could face life in my neighbourhood" he explains.  This man was Alex Mutak, one of The Leprosy Mission's rehabilitation specialists in Indonesia.

He arranged for Husaini to have part of his right leg amputated. A prosthesis (false leg) has greatly improved his mobility.  Husaini's friendship with Alex has given him better health and confidence. In spite of his disability, he is taking a leading role in the community. With Alex's encouragement, Husaini has set up a monthly baby clinic in his remote village. As a father of young children, Husaini noticed that the nearest health clinic was many miles away. Women struggled to travel the long distances to take their children for check-ups. Husaini observed that some of the babies weren't putting on weight. So he asked the doctors at the health centre if they would come to the village instead. 

Four volunteers from the village have been trained to weigh the babies. Once a month a drop-in clinic, overseen by a health centre nurse, takes place on the veranda of a village woman's house. All thanks to Husaini.  It's not me who did it, it's us, he explains. 'Before this I was never involved in anything. In this community, if you have no money, no matter what you want to do people will not support you. With the help of a small micro-credit loan from The Leprosy Mission, Husaini set up a shrimp fishing business. He makes about 600,000 rupiahs a month (about £35) which he says is enough to buy rice for his family.  Husaini is content with his life now.

Yet he is all too aware of the stigma he has had to overcome to find acceptance and respect. 'If you want to borrow money from someone, people will say, "You have a deformity. How can you work, how can you pay back this money?" If you are well people believe that you can work and can do anything. If someone's got a complete body people will not look down at them because you can stand and walk and work. Having to deal with these attitudes has given Husaini a heart for the weak and the poor. Sometimes when I see an elderly man or lady I give them big discounts, Husaini says smiling. If disabled people come to buy shrimp, I say just take it. I only sell to people who have money. After work if I still have plenty I will stop by elderly people's houses and give them the shrimp. Sometimes young mothers say, "I wish I could buy the shrimp from you." And I say, "Okay, just take some." As Husaini stands at the water's edge with his wife and children by his side, his hiding days are definitely over.

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Self Help Group
Throws a Life-line:  Kunti's Story

She was raised in a thatched home on a small plot of land beside a river. Because of frequent flooding, the ground around the house was difficult to cultivate and use as a source of income for the family. It also meant living conditions were very poor which resulted in Kunti losing her brother to Typhoid at the age of 4 and her father to chronic TB when she was 7. To support her children, Kunti’s mother continued to work hard for other people in the village and also collected and sold firewood. These jobs were difficult for her to carry out as her mother was affected by leprosy and chronic asthma. In her early teenage years, Kunti’s two sisters married and moved away to other villages, leaving Kunti alone with her mother. Kunti did all she could to relieve the strain on her mother, but the hard labour took its toll, and she recently passed away from chronic asthma and pneumonia.
However, things are now looking up for Kunti as her mother was a member of a self help group. Self help groups are established in many small villages to help empower members to tackle issues such as illiteracy, medical care and managing communal wealth. These groups can become a life line for those who have no one to turn to. The groups have a very positive impact on the communities they work in. Individuals and families are helped to set up businesses by a small loan from the group
(TLM seed money + members’ savings), which they then pay back as the business grows. They address literacy issues by providing training in the areas of reading and writing and also teach people self care, an important part of managing life with leprosy. After her mother’s death, the group decided to enrol Kunti in her mother’s place. Her sister and brother in law have moved back to the village, and although they are very poor themselves, are helping to provide for her. Part of the project
is to provide scholarships to young girls in the community who wouldn’t otherwise have the opportunity to.

Village Leader - Krishna's Story

Meeting Krishna from Muzaffapur, in North India, stands out for me as evidence that there is always hope for people with leprosy. I met her last November when a group of intrepid Kiwis, ranging from age 15 to 71, embarked on a three week trip to India. The ‘Morph Trip’ exposes Kiwis to the realities of leprosy and poverty in a third world setting and focuses on visiting and interacting with Leprosy mission field projects. Our group represented much diversity, and some had never been out of the country before! The one thing common to us all was a heart for people with leprosy and an interest
in The Leprosy Mission’s work in India. We visited a range of hospitals and field projects, including slum areas across North India, and it was an eye opener for our team to see the reality of third world poverty. It was also a chance for us to acquaint ourselves more fully with the realities of leprosy and
the potentially devastating effects this disease can have in a person’s life. The one thing that is clearly demonstrated during these trips is that there is real hope for people with leprosy through the work being done by Leprosy Mission staff. For me, as team leader, it was a privilege to see a number of profound developments in the community development work in Muzaffarpur, in Northern Bihar, since my last visit two years ago. Krishna had been helped through a 3,000 rupee ($100NZ) micro enterprise loan to start a small shop in her village. She is married and has two sons and two daughters. Originally, she was invited by the women of her village to join their Self Help Group, and out of the accumulated funds saved by the women in the group, Krishna was able to access a loan for herself. Her business is very successful and her loan has long since been paid back to the Self Help Group. During her time as a member of the group the others recognised her natural leadership abilities, and eventually they and the other people in her village looked to her to take a more prominent leadership role in the community. What a remarkable difference! How amazing it was to be able to share time with her as a group! Our team left India, not despondent and overwhelmed because of the crowds, poverty, noise and pollution, but we left full of joy and hope for the difference being made in people’s lives because of support in New Zealand.

A Goat's Tale - Fikirte's Story

The scorching sun beat down onto the dry dusty earth; goats bleated; and a desert wind blew lightly into my face. Ahead of me were some straw huts, and I walked towards them through a gap in a fierce looking barbary fence. A woman with a cropped haircut and beaming smile came running towards me, her hands outstretched in welcome. Behind her ran three goats, all nipping at the hem of her dress, followed by a nervous-looking girl of about twelve. We introduced ourselves.

Fikirte was born and raised in Tesfe Hiwot, an isolated desert area where her parents were sent by the government because they had leprosy. Unfortunately Fikirte got leprosy as well, but hers was diagnosed early and drug treatment prevented disability. But Fikirte has still had to live with the discrimination of having leprosy affected parents and being condemned to isolation in this lonely, desperately poor area in the barren desert of Ethiopia. She married the son of another leprosy-affected family, and they now have two teenagers, a son and a daughter. Prior to the SEED Programme being launched by ENAELP , Fikirte’s family had no regular work, little income, and no opportunity for her kids to go to school.

Now she is the Treasurer of her Income Generation Group from which she has taken a loan. Using this money Fikirte bought the three goats which the family is fattening. Her kids take it in turns to look after the goats each day and find food for them. This can mean long treks away from home. This Seed Programme has shown Fikirte to be a leader among the women. She very much appreciated the training the Seed Programme has given her for the role of Treasurer, and wants more opportunities for women to become decision-makers in their homes and in the community. During this exchange of information, using a translator, Fikirte’s daughter ran off with the three goats so they could find some food.

As I watched them go, I couldn’t help but marvel at this bright intelligent woman who by world standards had nothing and was no one. The Seed Programme is making a difference and Fikirte loves the opportunities it is bringing. But I can’t help wondering what she might have achieved if she’d had the same opportunities as I and the freedom and plenty that we take for granted.

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