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.

Volunteering with HANDA - Huang Pei

For six months I have worked as a volunteer for HANDA, looking back, although I have cried and sweated, I laughed and smiled more often. For me it was the ‘awakening of awareness’.
 I am not from a rich family but I’m the only child and so my parents try to give me the best things all the time. I was a girl who was only interested in novels, stars and soap operas. Although I’m not self-indulgent I am not considerate or sensible and I know very little about the difficulties of life.  I wished to help others but did not know how to.  But now I have stepped out a stride, and realized that beyond my quiet and beautiful happiness there are many people living in a very difficult situation. I saw another side to the world: the desolation and forlornness behind the prosperousness. I also saw the fortitude of those who face these difficulties. From then on I began to pay more attention to what was happening around me and to all kinds of people. In a way, becoming a volunteer has opened a door for me to see and to feel the world.
Secondly, I learnt how to get along with others and how to be considerate to their needs. Only children can be like little emperors in their family, and they take for grant all that is offered to them and never think of repaying. I have become more sensitive to the needs of other people and more willing to stretch out my hands to help.
Thirdly, we have learnt many things that we can't learn in school but are useful for our future work. The knowledge we study in school is limited. We have learnt how to write a proposal or application, how to raise money for an activity, how to arrange the route for the work-camp, how to communicate with local authority and local people, and how to hold a lecture.
Lastly, I have made good friends with other volunteers and the elders in the villages. We work, laugh and cry together and we have worked together to solve so many problems and to overcome so many difficulties. Although there is disagreement sometimes we reach an understanding calmly because we have the same goals. Moreover, we are battle companions and brothers, the elders in the village have become are our common relatives. When it’s getting colder, we worry if they have enough clothes. When it blows or rains, we worry about their homes. Actually, they don’t care what we can do for them, they simply enjoy our company. They say that they have” experienced hardship over the past few decades, and we are not afraid of some more years.” The warmth and friendship we give them is precious, after years of hardship.
During the most precious years in one’s life, the college years, some people choose to work hard in their ivory towers, some people choose to take part in a student union, and some students choose do part-time jobs to prepare for their future work. I chose to be a volunteer of HANDA as my special memory. It has not me disappointed me and has made my college life more colorful. If somebody asks me “what did you do when in your college days?” I would answer him proudly”I was a volunteer.”

STORY ARCHIVE

Shahana's Story

Despised, Rejected & Forgotten - from Intouch September 2005

Yes. Leprosy still stigmatises. Generally, people with leprosy are despised, rejected and forgotten.

Although many people today think leprosy is no longer a current issue, and it may not be for them, it is still a major prob­lem for many hundreds of thousands of people in developing countries around the world. Leprosy still has the power to ruin lives; break up families; be the cause of long-term unemployment; reduce people to committing suicide. Such is their lack of hope. Leprosy is a disease caused by a bacte­rium (m.leprae) which can be treated with a cocktail of antibiotics over a 6 or 12 month period.

Taking these drugs means the person is no longer contagious as the bacteria are killed immediately. And beginning the drug regime as early as possible means the leprosy bacteria have little opportunity to cause lifelong deformity and disability, something for which leprosy is renowned and which causes stigma. The sad fact is that because of the stigma and fear associated with leprosy, even when there are obvious symptoms and signs, a person may choose to hide them for as long as possible. This might buy time in the short term, but in the long term it means deform­ity and disability which can no longer be hidden. The secret is out. Social exclusion begins.

This is how it was for Shah who lives in India’s Bihar State. She was very depressed when I met her. In fact, she wouldn’t even look at me, and when I looked more closely I could see her eyes were full of unshed tears. It was pain personified. My own eyes clouded over, and tears fell onto her hand which I was holding – more and more tightly. Her story, sadly, is somewhat typical. Some 5 or 6 years ago Shah noticed a light coloured patch on her skin, and it didn’t go away. After a while she realised when she touched the patch she couldn’t feel anything. As time went on Shah realised she had reduced feeling in her hands and foreboding filled her daily as she worried, suspecting the worst: that she had leprosy.

Eventually Shah was confirmed to have contracted leprosy, which was when the worst happened. She was immediately thrown out of her family home. Her two brothers and four sisters would have nothing to do with her, and because her father had died some years ago, her older brother had assumed the role as leader of the family. His wife, Shah’s sister-in-law, despised her. Shah was admitted to a leprosy hospital and put onto the drug cure for leprosy. Unfortunately her body reacted to the leprosy toxins (or dead bacteria which were in her body) and she developed painful small red nodules on her skin and a high fever with joint swelling and pain. Depression kicked in. Even after a long period in hospital, Shah remained depressed. The nodules on her face had left her with scars she will probably have for life. With leprosy, a lack of feeling in her hands, and a scarred face, could life get any worse?

Sadly, yes. Time had moved on and Shah was well enough to be discharged from hospital. That was some months before I met her. Why was she still there? Shah had nowhere to go. No one wanted her. No wonder she wanted to take her life. Fortunately there was hope of sorts for Shah: she was to be offered a place at a Vocational Training Centre to learn a trade and eventually use it to earn a living. Perhaps in the company of other young people who had suffered similar tragic teenage years she will be able to find hope, regain a sense of self worth, and become a valued member of a new community.

Leprosy is a horrific disease, but it need not be in this day and age when there is a cure and deformity and disability can be prevented. With education, advocacy and training in places where leprosy is a common problem, the effects of stigma, marginalisation and social exclusion can also be reduced. Ultimately, the disease itself needs to be eradicated. The good news is it can be eradicated if we can increase the living standards of communities caught in poverty so that diseases of poverty, such as leprosy, can no longer thrive. We must seek to create healthy communities so that today’s children need never suffer the way Shah, and millions like her, have suffered. The cruelty of leprosy is a crime against humanity. The World Health Organisation recognises that leprosy is still a major problem today, as we do, and has developed a new strategy to beating this age-old disease once and for all. It gives a clear message to concerned governments and to agencies involved in leprosy work, about how to proceed over the next five years. Much is being done to influence regional and local strategies in countries where leprosy remains a public health issue and The Leprosy Mission is working at all levels, in partnership with other agencies, to help drive the strategy and give it traction.

Although The Leprosy Mission has been working around the clock since 1874, (that’s right, more than 130 years!) and some 14 million people have been medically cured of the disease (through the commitment of several anti-leprosy agencies) since the cure became readily available in the mid 1980s, leprosy is still being transmitted from person to person. In addition, there are some 5 million people around the world today who are trying to survive with leprosy related disability, but are facing ongoing stigma and social exclu­sion. We’ve come a long way. But there’s a long way to go yet.

Will you join us and add strength and solidarity to the fight? Can we achieve a world without leprosy? Can we eliminate leprosy related stigma, discrimination and social exclusion? Can people disabled by leprosy expect to participate in life where activities are based on equity, social justice and mutual respect? Let’s join together, say “yes”, and go for it. Let’s aim to say in a few years time, “leprosy is beaten”.

Rebuilding the Rubble - from Intouch Nov 2004

There is nothing more frustrating than seeing successful treatment and good development come to a shuddering halt because of conflict.

Ask Kasper, he sees the daily cost of Timor Leste’s struggle for independence from Indonesia. Kasper comes from the village of Hera where he lives with his mother and brother Gregory in a two-room house. They also have a small plot on which they grow some maize. For Gregory, life is not so bad - he is studying at Dili University and is also a teacher at the local primary school, which makes him the sole income earner for the family. It’s a responsibility he used to share with Kasper.

Kasper was diagnosed with leprosy many years ago before the Multi Drug Therapy leprosy drugs were available. Although he’s now fully cured, the effects of nerve damage are life-long with both feet and hands revealing tell-tale deformities. However a tendon transplant operation successfully restored movement in his left-hand and Kasper was able to access income generation funding from the Leprosy Mission to set up a local kiosk. After years of feeling both useless and worthless, Kasper now had a purpose as a contributing member of his family and community - there was great hope for the future!

Then in 1999, twenty-four years of Indonesian rule was overwhelmingly challenged by East Timorese voters in the UN-organised consultation process. The repercussions were both swift and violent. Four years later Kasper and those in his village are still trying to pick up the pieces. Among other things, the militia torched houses and took water pipes to make weapons, so now people walk at least two kilometres for water and homes have palm leaves for walls. It’s a huge step backwards for what used to be a reasonably prosperous place. Kasper’s kiosk venture was just one of the casualties and there is no work for him other than helping to grow the family’s small amount of maize. Once again his
future and his dignity have shrivelled away to nothing.

This is the reality of conflict - after the smoke clears, people are left to rebuild their homes, their lives, their hopes. Your support makes all the difference to enable people like Kasper to find the courage to start again.

From Loner to Leader - from Intouch June 2006

My name is Shehu. I was at secondary school in Nigeria when I noticed the first signs of leprosy. I was forbidden to play with any student or to enter the dining hall. Even my family made me live separately. I did not have a single friend. I stayed awake all night pleading with God that I might die. Finally I received the drugs to destroy the leprosy bacteria and had reconstructive surgery on my hands. When I was reunited with my family there was so much joy. They felt terrible when they realised that I could have been healed so much sooner. The Leprosy Mission helped me train to become government supervisor for leprosy and TB control. I am also chairman for IDEA Nigeria. IDEA is a global campaign to empower leprosy affected people. We advocate for rights, opportunity and dignity. I was all alone, but now I lead others so they don’t have to endure what I did.

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