Everyone has the right to be heard: Priya’s story

Priya stands outside her home
Priya stands outside her home

Stuart Towell reflects on a recent visit to Sri Lanka and an encounter that will stay with him forever.

Having visited Sri Lanka this summer, it conjures up vivid memories for me of the hot and humid weather and amazing food I tried on my trip. But what stands out for me the most is the dedication of the staff I met and their work towards an end to leprosy.

As there are no Leprosy Mission hospitals in Sri Lanka, Rev Joshua, Deborah and the rest of the team work tirelessly and selflessly in local communities with one mission in mind –  to find, cure and heal people affected by leprosy.

Many people in Sri Lanka know very little about leprosy or its symptoms, but they are all too aware of the effects it has on the body. There is a lot of fear and stigma surrounding the physical affects of leprosy, so much so that many affected by the disease are rejected by loved ones and forced out of their communities. It is for this reason that many people with leprosy are left afraid and isolated.

I remember the day we met Priya. We got up early to travel to her home with Deborah and Rev Joshua. As we walked through a makeshift gate I was immediately struck by how this place did not feel like a home. As I looked around, I realised just how vulnerable Priya is. A few pieces of wood and wire were twisted together to make a fence. It is though she is on her own in her village, her home set apart from the others.

It felt quite lonely and isolating for her and as we began to talk with Priya, it was evident that she is at risk from so many things. Others can see her vulnerability and she explained that she worries about the danger posed by thieves and sexual violence. She and her children are also at risk from snakes that inhabit the area.

Priya shared with us how her small hut cannot withstand the weather during the monsoon season. Often in the middle of the night she has to huddle around her bed with her children, unable to sleep with water running into the hut. I keep coming back to the way she described her life there:

“This is how I live – we manage.”

Deborah examines Priya's arm
Deborah examines Priya’s arm

Deborah checked Priya for signs of leprosy and soon realised she had lost sensation in her hands and legs, meaning she cannot work and struggles to do everyday tasks like cooking safely. For so long, Priya has felt as if people do not care about her. It was heartbreaking to hear her say that she feels her voice goes unheard. Everyone has the right to be heard.

Meeting Priya really highlighted why the work of the team in Sri Lanka is so vital. She will now be cured of leprosy. but for people like her, their journey doesn’t end there. Dedicated staff like Deborah and Joshua provide essential self-care training to prevent further damage and disability. They also provide leprosy education and awareness training to help communities welcome people affected by leprosy and combat prejudice.

For me, Priya’s story will be one I remember when I think back on my trip to Sri Lanka. I hope her life will be transformed and that more people like her will get the care they need, helping to ensure a better future for them and that their voices are heard.

Today, you can help someone like Priya. It’s vital that as many people as possible get the chance to be cured of leprosy and find healing. You can be part of this by donating today – and your gift will provide two life-changing things – the cure for leprosy and the promise of ongoing care and support.

Images: Ruth Towell

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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.

Sharidah in her shop
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

 

“Friendship, community and peace.” A visit to Purulia leprosy community

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A resident of Purulia leprosy community. Photo: Hassan Nezamian

For Lent this year, we’re focusing on Purulia Hospital in India and the many people who rely on its services. Here, Head of Mission Development Zoë Bunter reflects on a visit to Purulia leprosy community.

The heat was overwhelming as we climbed out of the air-conditioned car we had travelled in. I glanced around, trying to take it all in. I had never visited a leprosy community before and this one, near Purulia hospital in India, was in a remote location. We had travelled for some time along rough tracks and makeshift roads to get here and now it felt as though we were in a tiny village in the middle of nowhere. Curious faces watched us as we arrived, and the hospital staff greeted old friends and introduced my travel companion and I.

I was on my first trip with the Leprosy Mission back in 2014, to see the work for myself. My travelling companion, Hassan, was a volunteer and a photographer, capturing scenes of our work. We had pulled up in the centre of the community, close to the men’s quarters. The people who lived here looked at us expectantly and I knew I was expected to say something to the 30 or 40 people gathered around us.

The hospital nurse translated. I said how honoured I was to visit them from thousands of miles away, how we would love to spend some time with them, and I asked permission to come into their community for a few hours. Most of all I said I carried love with me – the love and care of people in England and Wales who prayed, gave gifts, and sent messages of encouragement and care.

The community would have once been called a ‘leprosy colony’. The people lived in this isolated place, surrounded by trees, because they had been rejected from the town. Many had severe disabilities and all of them were elderly. My guess is that the youngest person here would have been in their early-seventies, the oldest well into their eighties. They were decades younger when leprosy first took hold, before there was a cure. The disease ravaged their bodies and caused irreversible damage to hands, feet, arms and legs. They were cast out of homes and families, and Purulia took them in.

Residents of Purulia leprosy community. Photo: Hassan Nezamian
Residents of Purulia leprosy community. Photo: Hassan Nezamian

The noise of bird song was almost deafening, as we trudged the five-minute walk through the long grass to where the women lived. Smiles greeted us and women with faces wearing the marks of hard lives welcomed us into their humble homes. Built of brick, each person had their own room to sleep in. But every mealtime all the residents came together in the centre of the community where food was cooked over an open fire. Mealtimes were a social occasion!

The nurse explained about the solar lamps we saw on the buildings. He told us the government had refused to provide electricity to the community so the only light at night was through solar energy. These people weren’t considered important enough to need electricity.

As we walked back to where the food was cooked and where the men lived I was struck by something; love was here in this place.

The hospital staff and residents chatted easily – there was laughter and joking, there was compassion and care. The Purulia Hospital car or minibus would come here to collect those needing hospital treatment, and return them home after they had received medication, recovered from surgery or had ulcers and wounds dressed. But there was also love among this group of very special people. They sat together talking and sharing; together they weaved mattresses or drew water from the water pump. They knew each other like brothers and sisters, a big extended family.

I asked a woman about her life here in the community and she said, with a beaming smile, that she was happy here. Here, she told me, she was with others like her. No hatred, no name-calling. This was her home.

I had come from the UK hearing stories in the news about elderly and frail people struggling with the torment of loneliness. Here there was no such thing. I don’t want to romanticise life in Purulia Leprosy Community, it was clearly a hard life with none of the luxuries that I so easily take for granted. Sores and ulcers were a constant threat, the risk of infection and sepsis was very real. But here I saw love. People thrown together by the hatred of those who didn’t understand had found friendship, community and peace.

As I remember that morning in India, I am challenged by my misconceptions of what will bring me peace. I often think it will be security, nothing to worry about, being able to switch off from anxiety.

But I have seen the ‘surpasses all understanding’ peace that is promised in the Bible alive and well in a place where there is little security and everything to worry about. But what I do know is that this little community in West Bengal, and those who live here, have been bathed in the prayers of the prayer warriors of The Leprosy Mission – in the UK, in the chapel at Purulia Hospital and across the globe.

We do not always realise the power of our prayers, but I have seen the love of God poured out on those whom the world rejected, in loving response to the prayers of the saints.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7 (NIV)