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.

Jutlen’s transformation

Some of the postcards you sent to Jutlen last summer
Some of the postcards you sent to Jutlen last summer

Helen Walton reflects on a very special reunion.

Do you remember Jutlen? Last summer, our appeal focused on Premananda Hospital in Kolkata, India, sharing his story. Jutlen was a 16-year-old boy alone in hospital, fearful for his future, in need of surgery on his hands and feet and deeply upset by the stigma he had suffered because of leprosy.

I, too, remember the day I met Jutlen, because it changed my life forever.

Jutlen, on the day I met him at Premananda Hospital in Kolkata.
Jutlen, on the day I met him at Premananda Hospital in Kolkata.

As I sat on Jutlen’s hospital bed, looking at the harrowed expression on his face as he told me his story, I saw such pain and hopelessness that it has haunted my heart ever since. I wept for this young man, for the injustice he has suffered and for his pain.

His parents had died and his best friend had refused to have anything to do with him once Jutlen told him he had leprosy. Although he was cured of the disease, he was alone, disabled and scared for his future. I left his bedside that day full of sadness for him and for his situation.

As part of last summer’s appeal, we asked you to send Jutlen and others like him your prayers and messages of support. It was wonderful to see the outpouring of love for this young man. Your good wishes for his future meant so much.

Returning to Kolkata recently, with a couple of hours to spare before my onward flight, I returned to Premananda Hospital. I was overwhelmed with curiosity as to Jutlen’s whereabouts. Where was he? How was he? As I was escorted to the men’s ward, I saw him. One of his legs was in plaster, indicating that he had recently had an operation – the reconstructive surgery he so badly needed to help him walk properly again.

Jutlen was completely transformed
Jutlen was completely transformed

What I hadn’t expected was the complete transformation that I saw. It wasn’t just the physical transformation – Jutlen’s smile was infectious; he was animated and excited to see me. Slowly he got off his bed, then knelt and touched my feet and knees, a gesture of thanks and gratitude.

Through the loving care he has received, all thanks to you, Jutlen has found hope again. In just a few short months his life has been turned around. He is healing from the effects of the rejection he felt and was looking forward to returning to education on leaving hospital.

It made my day to be able to spend time with Jutlen.
It made my day to be able to spend time with Jutlen.

When you supported Jutlen and others like him at Premananda Hospital, you helped turn a young man’s life around. Because of your kindness, Jutlen has found new hope. I’m so thankful that I got the chance to meet him again and see this for myself – and I couldn’t wait to share the news. As he rebuilds his life, please continue to remember Jutlen – as well as the other patients and staff at Premananda Hospital in your prayers.

The least of these

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Ali has suffered a lot of stigma as a result of leprosy. The damage the disease has caused to his hands means he can not work.

Regional Manager Jarrett Wilson reflects on his recent visit to Nigeria.

Imagine a destitute community with unsafe buildings amidst uncollected rubbish, ravaged by unemployment and disease. The air is heavy, thick with heat. Dust kicks up as motorcycles travel past uneven, pothole-riddled lanes. Behind the haze are similarly dishevelled houses, banked onto decaying slopes. There are piles of litter everywhere, while streams of dirty water snake through junctions and behind walled corners. Wherever water and rubbish meet, stray dogs come panting for relief from the relentless heat as they scavenge restlessly.

That’s Dakoko, a slum neighbourhood in Minna, Nigeria, where people affected by leprosy strive to live alongside those without the disease, themselves marginalised and outcast.

But no-one wants to eat the food they cook, and few make any attempt to bridge the divide and befriend someone with leprosy. Those living here with this disease are outcasts in a community of outcasts, another example of how we see, again and again, that people affected by leprosy are the poorest of the poor.

Zachary, whose 50 years of living with leprosy have left him severely disabled.
Zachary, whose 50 years of living with leprosy have left him severely disabled.

Among them sits a 70-year-old man, sheltered in the dark of his tiny home. His name is Zachary, and he has been afflicted with leprosy since the 1960s. Cured of the disease, but with no sensitivity in his extremities, the ravages of the bacteria are evident in the stumps ending each of his arms and legs. Zachary no longer has any fingers. His feet are gone. His ulcers slowly weep into thick bandages, prepared and regularly applied by Leprosy Mission staff.

Beside him sits one of his only friends, Ali, who is also affected by leprosy. His hands are clawed, making it difficult for him to work, but he has newfound purpose as informal carer for Zachary. Now in his 40s, leprosy snatched his life as a herdsman away. Friends shunned him. His wife deserted him.

The Leprosy Mission came to his aid and cured him of the disease, but they are still working daily to help his sense of despair and prevent his disabled hands and feet from developing further problems.

Sitting before them both, the temptation is to feel numb, to succumb to the same cynicism sometimes encountered when leprosy callously steals one’s opportunities and ambitions. There is no ‘quick fix’ for their problems. But to give into cynicism would betray Jesus, whose face appears so starkly and formidably on the faces of Zachary and Ali. The words of Jesus, recorded in Matthew 25:40, offer a challenging corrective: ‘whatever you did for one of the least of these brothers and sisters of mine, you did for me’.

We choose to look into the faces of Zachary and Ali, and to see Christ. In that moment, the heat and dirt, the sweat and grime condense into a fixed point, claimed by and for Christ. When as we clothe and feed and visit and care for these neglected among neglected, we do it for Jesus.

In a tiny, dark corner of Dakoko, the healing ministry of Jesus is being birthed again.

As you pray this week, please remember Zachary and Ali and pray

  • that people affected by leprosy in places like Dakoko are embraced by the communities in which they live
  • that The Leprosy Mission would encounter open doors to bring education and awareness to marginalised communities about the facts of leprosy, raising awareness and combating stigma
  • that all work carried out by staff and volunteers there would demonstrate the love of Jesus