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.

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Success for leprosy champion Sharidah as village gains a water pipeline

Sharidah is a leprosy champion for her community and has recently played an important role in securing a big change for their lives.
Sharidah is a leprosy champion for her community and has recently played an important role in securing a big change for their lives. Photo: Hassan Nezamian

Your gifts to the CREATE appeal are training people affected by leprosy to become ‘champions’ in their communities who can effectively challenge discrimination and fight for change. Read on to learn more about Sharidah, one of our first leprosy champions, already making a difference in her village.

60-year-old Sharidah lives in a leprosy community in Chhattisgarh state, close to The Leprosy Mission’s Champa Hospital. She’s been living there since she felt forced out of village where she grew up, when her husband rejected her because of her leprosy. Sharidah had been suffering the effects of the disease for some time, but it was when they became visible, with damage to her hands and feet, that he threw her out and kept her from seeing their children.

Thankfully now they’re grown up, her children ignore the negative attitudes surrounding leprosy and often come to visit, making sure Sharidah is part of her grandchildren’s lives. For some years now she’s been part of a self-help group that has enabled her to set up a small grocery store and earn a regular income, but sadly, the stigma of leprosy still remains. Sometimes people don’t want to shop there because of her disabled hands and feet, so her customers are mainly other people affected by leprosy.

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Sharidah in her shop. Photo: Hassan Nezamian

When we first met Sharidah, we soon realised she had a real passion for creating change in her community. She was keen to improve life for other people affected by leprosy because, as she told us, she wants to ‘give something back’ when The Leprosy Mission has done so much to help her in the past.

Sharidah was excited to learn about the ways the CREATE project would be working in her local area. The aim of CREATE is to combat stigma and discrimination and improve life chances for people affected by leprosy. Part of this involves training up people to become ‘leprosy champions’ who can become advocates for those around them. It was clear from talking to Sharidah that she would be an ideal leprosy champion for the village – and she was more than happy to help.

When we visited the village again recently, it was amazing to see first-hand the difference Sharidah has been helping to make. Her enthusiasm to see change happen means that this year, the community will have a piped water supply for the first time.

Around nine years ago, a new water tower was built on the edge of the community. It was built to supply the whole of the surrounding area, but the leprosy village was not included in this, leaving residents without a pipeline. Sharidah’s self-help group wrote to different local government offices seeking answers but received no reply.

Eventually, they were promised that work on a connecting pipeline would soon start, but once the work had started it was soon put on hold. Sharidah – now trained as a leprosy champion – and her friends organised protests at the water tower and got in contact with authorities once more to explain why clean water is something everyone should have access to and why leprosy communities should not be forgotten about.

Before long, they saw success. Work on the pipeline started up again and Sharidah told us she was confident that it would be completed this time. If not, she already has plans for a new campaign! When finished, the pipeline will bring water to a communal tap in the village and eventually, will pipe water into individual homes.

Sharidah’s success in making change for people affected by leprosy shows just how much of a difference leprosy champions have the potential to make – and what can be achieved by people standing on behalf of their communities against discrimination. Thanks to you, many more people like Sharidah will be trained as leprosy champions – and many more lives will change as a result.

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Sharidah with CREATE project staff

 

“People kept their distance” – Jaseem’s story

Alisia O’Sullivan reflects on her trip to India to meet the CREATE project team and some of the people they will be helping in the future – including Jaseem.

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A man affected by leprosy in one of the villages in India I visited. Photo: Ruth Jones

On my last day of my first trip to India to visit the work of The Leprosy Mission there, I tried to capture some of the many thoughts and feelings whirling around my head in writing:

‘Poverty, humility, despair, hope, pride, change, beauty, contrast, noise, pollution, exciting, exhilarating, HUGE.

‘How can I encapsulate all I’ve seen? It’s been so busy and such a jam-packed schedule to visit examples of our work and see the needs of leprosy affected people in India.

‘It’s been difficult to process everything – and now I’m here on the last morning before flying back to the UK and I finally have time to pause and reflect.

‘I thank God for the clean bed I’m staying in. As the monsoon rain pours down I’m dry, mud-free and there’s no stench of animals and their waste (an ever-present odour as we visited leprosy-affected families and communities).

‘I thank God that I’m going home to a family who love me – and whilst I’m not perfect, they would never throw me out because I contracted a curable disease.

‘I thank God that I have a good job and can help people affected by leprosy, so when I tell the stories of people in need, I pray that I do honour them – that I can say what I saw and convey the need, but also that I can show what a difference can be made in their lives.’

Here’s a story I want to share about 22-year-old Jaseem, who was facing an uncertain future on the day we met him.

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Jaseem, a young man affected by leprosy. Photo: Ruth Jones

Early on in our busy trip to see the CREATE project, we arrived in a remote Indian village where the streets were so narrow that we had to abandon our car and walk the final part of the journey on foot, causing quite a stir as people noticed our CREATE t-shirts.

Throughout the trip I was especially conscious that meeting young people affected by leprosy and interviewing them is quite a responsibility, asking personal questions about such a difficult subject. With Jaseem, much of his story was articulated not through words but rather through his sad stare and nervous hand wringing.

It tugged at my heart that when Jaseem was being photographed, I noticed how one of his younger brothers slipped away out of the frame – maybe because he was shy or perhaps because he was too embarrassed by the crowd and the attention being given to his family, who have been through so much. I really felt his sense of rejection and uncertainty that day.

Jaseem shared with us that when he discovered he had leprosy, he felt worried and that his life was not worth living. He said he only started to feel better once he was under the care of the hospital where he received reconstructive surgery on his hand and foot.

Unfortunately, despite being cured and with his mobility improved, he experienced ongoing discrimination in his village. People would not sit with him or kept their distance and he took care to hide his hand. It was heartwrenching to hear that such a handsome and bright young  man was being shunned by his neighbours. Living in a remote community, he had nowhere else to go.

It was a stark reminder that even when people have been cured of leprosy, their lives are not necessarily transformed. It’s a much bigger challenge to educate and change the hearts and minds of isolated communities where age-old prejudices are rife. That’s why the CREATE project, which will tackle discrimination in four states across India, is so badly needed.

Later, I discovered that Jaseem has been looking for work after completing training as a mobile phone technician but frustratingly, he had not been offered a job, again due to the stigma associated with leprosy.

When I asked him if he thought things could change for people like him affected by leprosy, he said that people would not listen to him, but would listen to people like us,  by which he meant the CREATE team and doctors.

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CREATE project staff raising awareness about leprosy in rural India. Photo: Ruth Jones

As we left I wanted to encourage him and said we were looking to help and would be praying for him and his situation. Jaseem thanked us profusely and CREATE project staff assured me that they will now be involved in advocating for him as he looks for work and to tackle stigma in his village.

There are many more young people in India just like Jaseem, facing uncertainty and anxiety about their futures because of their leprosy. By supporting the CREATE project, you could play your part in making sure stigma is stamped out and that people affected by leprosy will have the opportunity to complete their education, work and look forward to brighter futures.

Find out how a gift from you could help stop leprosy discrimination in India. You can also watch a video of Jaseem talking to Alisia about his experiences.