“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)

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.”

Breaking down the barriers

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Media and Publications Officer Charlotte Walker blogs from Crete, where she has been spending the week with supporters undertaking the Samaria Gorge Challenge and visit to Spinalonga.

‘Community cohesion’ are buzzwords used by PM David Cameron when addressing tensions between the diverse groups of people making up British society in the 21st century.  Undoubtedly where there are people there are divisions between groups who are seemingly ‘different’ and, crucially, misunderstandings.

Never has a truth been so apparent as when crossing the strait of cobalt-blue water between the upmarket tourist resort of Elounda and Spinalonga island, Greece’s leprosy colony until 1953.

I was fortunate enough to visit Alcatraz island, home to the former US jail for the country’s most notorious offenders off the coast of San Francisco, a few years ago.  There I was beguiled by stories of intricate escape efforts and the mysterious fate of those prisoners who successfully escaped into the treacherous seas encapsulating the prison.

Although many of the inhabitants of Spinalonga were devastatingly disabled, some in the earlier stages of leprosy were more than capable of swimming the calm sea to Plaka, a stone throw’s away on the mainland.  Yet, tellingly, there is no record of any escape effort from Spinalonga.  Τhe truth is that the people of Spinalonga were already life-long captives of one of the world’s most stigmatised diseases.

A newly-unveiled plaque in the former cemetery at Spinalonga reads that it is the resting place of those who already had buried their hopes and dreams, painting a particularly gloomy picture.

But contrastingly, a stroll around the faithfully-preserved community gives rise to a sense of peace, love and acceptance.  On the wall of one of the former shops hangs a grainy black and white photograph depicting women in starched white uniforms.  They had taken it upon themselves to care for the sickest inhabitants at the island’s hospital which witnessed scenes of great suffering and grief.

Leprosy may have robbed these people of their health, freedom and dreams but God did not leave these people, who undoubtedly endured more than their fair share of suffering and heartbreak, without hope.  There is a sense, heightened by a story of the island’s priest who remained on Spinalonga for five years following the final death knell despite its evacuation, that people pinned their hopes on what is higher and yet unseen.

They cared for another, supporting each other through trials and tribulations, nursing one another through the toughest of times.  They showed great love for one another at a time when they were outcast from society.

It is a timely reminder of the great strides The Leprosy Mission has yet to make in breaking down the boundaries between leprosy-affected communities and ‘uninfected’ people.

In India I had the privilege of visiting a leprosy-affected community on a project designed to inform residents of their human rights and to empower them to stand up to the driver throwing them off the bus after clocking their leprosy-affected hands.  But despite valiant efforts, the community requested for higher walls to be built around the colony.  The concept of breaking down barriers remained alien.

Tackling attitudes and putting right misunderstandings is our toughest battle yet in the fight against leprosy – now an easily-treatable disease.  But not until we crack this will we win our fight.