Why U Soe Win inspires me

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U Soe Win

James Pender, Programmes and Advocacy Officer (Asia), first met U Soe Win on a visit to Myanmar in 2016. Ever since, he’s been inspired by the way he works to effect change in his community.

We all have people we admire, whether they are well-known figures from the past or individuals from the present. They are important in our lives as they inspire us to keep going, overcome hurdles and press on towards the vision God has given us.

The person that has inspired me most since I joined The Leprosy Mission five years ago is U Soe Win. This is partly because I have got to know him a little better than some of the other people I have met overseas, having met him on three visits to Myanmar. I also had the chance to spend a week with him at a meeting recently. There’s a picture of him in the entrance area of our office in Peterborough, so I’m reminded of him every day when I come to work.

U Soe Win is a man who is very visibly disabled as a result of leprosy. He suffered terribly both from the disease and from the stigma associated with leprosy after being diagnosed in 1983. As a result, for many years he isolated himself, locking himself away at home to avoid the pain of people treating him unkindly when they saw his leprosy-affected hands and nose.

U Soe Win is not an inspiration to me because he has overcome social prejudices and now lives a ‘normal’ life in his village. Too often, it can seem patronising when disabled people are praised for ‘being able to cope with living a normal life’. Why shouldn’t they have that chance?

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With other members of the local disabled people’s organisation

No, I admire him because he is an exceptional individual by anyone’s standards. He’s an effective leader, heading up the disabled people’s organisation in his village that has now expanded and set up groups in neighbouring areas. The group has successfully petitioned the local council to make public facilities more accessible – for example, installing a ramp at the local school, which not only helps disabled children but also enables disabled adults to vote, as the school is used as a polling centre during elections.

U Soe Win is also a champion for the rights of others. When a young woman in his village was raped, he helped find the perpetrator and when the case stalled, he personally met with the judge involved to see that it progressed to a regional court, ensuring that the man responsible was jailed.

And his influence now extends beyond his local area. His hard work on behalf of his community, along with his positive attitude, has meant that U Soe Win has now had the opportunity to attend national and international conferences, speaking on behalf of people affected by leprosy.

It has been wonderful to see U Soe Win use his skills to become such an advocate for so many and I’m privileged to know him.

The bridges you’re helping to build

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New accessible bridge in Kyar Daw, Myanmar.

This bridge is a lifeline for the people of Kyar Daw, Myanmar – and you helped build it.

Your gifts, together with funding from UK Aid, were instrumental in replacing a rickety, hand-made bamboo structure (pictured below) with a concrete bridge that’s fully accessible for everyone – from children to the elderly to disabled people. The bridge provides a vital link with the school, clinic and market in a nearby town meaning that people in Kyar Daw can get there without taking their lives into their own hands.

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Programmes Advisor James Pender walks along the old, unsafe bamboo bridge.

Improving accessibility is a key element of The Leprosy Mission’s work in Myanmar – a country where many people we work with live in remote areas with no public transport, proper roads or easy access to public services.

Thanks to training and community mobilisation, many people affected by leprosy and disability are being empowered to advocate for change in their own neighbourhoods. U Soe Win is just one of those people and we had the chance to talk to him recently about the changes he’s seen as a result.

U Soe will always remember the “saddest moment” of his life. It was the day his daughter Daw, 15, who was selected to represent Myanmar in the East Asian Rowing
Championships, was setting sail for Singapore.

The proud parents of all the team members were at the harbour to wave their children goodbye – apart from U Soe.

“I didn’t want to bring shame on my child,” he said. “It was one of the saddest moments of my life.”

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U Soe Win

It was U Soe’s leprosy that made him too ashamed to be there for his daughter’s special day. He was diagnosed with the disease in 1983, aged 33. But the traditional treatments he tried failed and his hands and feet became severely disabled. Fearful, because of the discrimination he suffered, he shut himself away.

A decade later, the vegetable farmer was listening to the radio when he heard about multidrug therapy – the cure for leprosy – and set off to find the clinic mentioned. He took the drugs and was cured – although the effects of leprosy on his hands and feet sadly can’t be reversed.

U Soe is now chairman of his local Self Help Group (SHG), made up of people with various disabilities. The group received training from The Leprosy Mission, learning about their rights under national and international law and how to lobby for them.

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U Soe Win’s self-help group.

Since receiving training, they have had many advocacy successes, particularly in making sure their local area is more accessible. New wells have been dug; bumpy roads repaired and widened to improve access for wheelchairs; and new wheelchair ramps installed at a hospital and a school.

Other successes include children with disabilities being readily accepted in schools for the first time and many local people learning about disability and discrimination through drama workshops – contributing to changed attitudes towards U Soe and the rest of the group.

Most recently, when the case of a man who raped a disabled woman stalled in the courts, U Soe met the judge and court officials pushing for the case to he heard. The man has now been jailed for 10 years.

Thank you for partnering with us to transform lives in Myanmar. Once too ashamed of his illness to leave the house, U Soe is now a confident advocate in his community, building bridges and improving life for people with leprosy and other disabilities.

“I just wanted to die” – living with leprosy in Myanmar.

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Than Lwin – © Paul Salmon

Myanmar is one of just 16 countries in the world still reporting more than 1,000 new cases of leprosy every year. Stigma and disability are still enormous problems there, as profiled in this recent Guardian article. The Leprosy Mission is working hard to transform lives there, but one of the most simple things we can do – and that you can play a part in – is treating people affected by leprosy as early as possible, curing them of the disease before disability takes hold.

Every time we meet people like Than Lwin, we remember why swift diagnosis and treatment is so vital. The 69-year-old developed leprosy about 40 years ago.

It all started with him being unable to feel his fingers;  then he began to experience loss of sensitivity on his body. Unfortunately, this led to his torso being badly burnt while he was bending over an open fire – he simply couldn’t feel what was happening. He later worked in the fields but using a scythe to cut grass meant he cut off and damaged some of his fingers and toes, leading to him becoming severely disabled.

About 21 years ago he was finally diagnosed with leprosy when a medical team visited his village. The Leprosy Mission provided him with multidrug therapy (MDT). He had lived with the illness for 19 years at that point without knowing what was wrong with him, but was finally receiving the cure.

Before his diagnosis Than Lwin said he felt like he ‘just wanted to die’. Because of his disabilities, people did not want to come near him, even crossing to the other side of the road to avoid him. For much of his life he has been isolated and lonely.

“My saddest memory is when I offered a monk some food, just like other people do,” he said.

“The monk took the food but when he thought I was not looking I saw him throw it away.”

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Than Lwin’s hands and feet. He is wearing protective footwear supplied by The Leprosy Mission – © Paul Salmon

Now that stigma in his village has been broken down thanks to The Leprosy Mission’s work, he feels happier about his life. He has gained enough confidence to start attending community meetings and finally feels included.

He is also good friends with two other men affected by leprosy and the three regard each other as ‘brothers’, supporting each other and going to social events together.

Talking about when he was first diagnosed with leprosy, he told us: “Even though there was medicine I didn’t want to take it – I just wanted to die. Since you have helped me, life is worth living again.”

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Ye Ye Shin – © Tom Bradley

Sadly, some people affected by leprosy feel less hopeful about their lives. 39-year-old Ye Ye Shin developed leprosy aged 10 but was not diagnosed until several years later. She has spent most of her life carrying the burden of stigma alongside one of her brothers, who is also affected by the disease.

“I don’t want to get married because I don’t want to bring trouble to other families,” she told us. “When two of my siblings got married their in-laws were not happy to learn that their children had married into our family.”

Ye Ye Shin’s other brother is a farmer but she does not work with him as it makes her ulcers worse. She sometimes goes to social events in her village but doesn’t venture further afield because she is worried how people will react to her.

She dreams of one day having her own business but so many things have made life tough for her – her disabilities, her family’s poverty, and the terrible stigma of leprosy.

There are many more people in Myanmar who have yet to be diagnosed with leprosy. For them, the cure can mean a life free from much of the pain suffered by people like Than Lwin and Ye Ye Shin – the stigma, the struggle to earn a living, the sadness.

Did you know that as little as £24 can cure someone of leprosy and transform their future?

How many people could you cure? Donate today and change a life forever.