“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.

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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.

Rachel talks to self-help group members.

Life in a leprosy colony

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Rachel talks to members of the self-help group at Nav Narman

In the second of her blog posts from India, Partnership Officer Rachel Snart continues her journey with a visit to two leprosy colonies.

As part of my visit to the area surrounding Naini Hospital, we visited the leprosy colony of Nav Narman, to see a self-help group that had been set up through our pioneering Challenging Anti Leprosy Legislation (CALL) project, which has successfully fought for the rights of people affected by leprosy and lobbied for discriminatory laws to be abolished.

It’s hard to believe that in the 21st century, many people affected by leprosy find it hard to get an official identity card. Without an this card, they can’t vote or receive government benefits. One law still allows leprosy to be cited as a reason for divorce. The CALL project has also worked to help people find sustainable employment. I sat and chatted to a group of women about how it had transformed their lives. One of them was Kalpana.

She explained that CALL had given her and her friends more power to challenge and fight for their human rights. To create sustainable employment, each member of the group had put into savings the small amount of money they could afford each month. They told me of the pride they felt in having their own pot of money to work with. These savings have enabled them to set up a business selling jewellery.

Kalpana, a member of a self-help group supported by The Leprosy Mission
Kalpana, a member of a self-help group supported by The Leprosy Mission

Today, they told me they can hold their heads high, proud of having a business rather than begging to get by. Kalpana was thrilled with how far the group has come in the last five years.  After starting with no ID cards and no employment, begging for survival, they now have a self-help group, savings, and an income. Their ID cards also enable them to receive rations of low-cost rice, oil, sugar and salt from the government.

Kalpana also told me more about her own story. She was rejected by her family a long time ago when she was first diagnosed with leprosy. The stigma of the disease meant that her younger sister was finding it difficult to marry. As soon as potential suitors found out Kalpana had leprosy, they didn’t call again. She felt as if she was a nuisance to her family and made the decision to leave home.

“It was painful to leave my family,” she said. “I still remember what it felt like to be rejected. I still feel the pain like it was yesterday”.

A family member quietly told her about a leprosy colony far away where she would feel more at home and find other people like her.

Thankfully, Kalpana did find acceptance. She began to make friends and even met her husband there. When they first met, he took her to The Leprosy Mission’s hospital in Naini to get proper care and treatment. They went on to marry and have three daughters and two sons together. Kalpana has high hopes for her children’s futures and told me how two of them are receiving support with their education.

As Kalpana spoke of her new life and her children, her face lit up and I knew it was so important to carry on this work for communities just like this one. Until they are treated as equals by society, we haven’t finished.

Later that day, we visited a second leprosy colony called Karela Bagh. How different this colony was to Nav Narman. In a bid to help people to get away from a life of begging, the government supports Karela Bagh, making sure residents have access to running water and toilets. They have also been supplied with ID and health insurance cards.

Tanik, the 60 year old leader of the colony, told us that they survive by cattle rearing and growing crops as well as receiving some donations from locals who want to help.

It was good to see that there is a good working relationship between the colony and the government. During wet weather, the dirt track leading to the community was often impassable. Tanik successfully applied to the government to get the road concreted, improving access for those with disabilities.

Tanik, leader of the leprosy colony, with fellow resident Rama Shanker.
Tanik, leader of the leprosy colony, with fellow resident Rama Shanker.

Tanik introduced us to a man called Rama Shanker, who told me he had endured years of terrible discrimination in his village as a result of leprosy. His own wife brought him to the colony twenty years ago, and left him there, saying “Don’t allow him to come to my house. My children will not be married if he is at home with us”. He was sad that she deserted him, but said he understood that she was trying to protect the family from stigma.

Rama used to love his job as a bus driver – something he had done for ten years before he got leprosy. However, as his feet and hands became disabled and developed ulcers, he could no longer drive the vehicles.

“I was really sad and ashamed when people asked me why I looked like I did. I had to leave the bus company because I physically couldn’t do my job any longer,” he said.

Sadly, Rama received no pension or help from his employer despite a decade of faithful service.

I asked him if his wife and children ever came to visit him. “No,” he said. “She only started to visit after the children were married.”

Rama sighed sadly as he told me how he missed his children’s weddings and he has also missed out on being a grandparent. He brightened when he said that his children do occasionally now visit, however.

The government has provided a wheelchair for him and he now finds it much easier to get around, even coming second in a race for disabled people last year.

“Every person around should be educated all about leprosy so that more people are treated like they are the same as everyone else,” said Rama. “People should realise it is a common ailment like other diseases, then nobody else would have to leave their families in the future and have the sad life that I did. Changing some of the laws for a start would help to change people’s attitudes.”