Rachel talks to self-help group members.

Life in a leprosy colony

Mahkvw self help group - leprosy colony - Allahabad4
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.”

Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.

Siphi and Bela’s new home – and an end to stigma

Partnership Officer Rachel Snart recently spent two weeks visiting India to see how your gifts are transforming lives there. One family she met found that for them, leprosy meant they were ostracised by loved ones. We were able to help, but stigma in the community meant further steps had to be taken to ensure a happier future. Rachel writes:

Staying at The Leprosy Mission’s Naini Hospital in Uttar Pradesh, we visited villages in the surrounding area to learn more about the impact our projects are having. Driving out there, I became acutely aware that the more remote a place is, the poorer the community.  We drove upon dusty tracks that weren’t even roads and needed to walk the last part of the journey because the car couldn’t drive over the rocky terrain.

Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.
Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.

In one village, we met Siphi. His wife, Bela, was diagnosed with leprosy a couple of years ago. They are the only family in their community who are affected by leprosy. In remote areas like this, where people don’t often know much about leprosy, people with the disease are often singled out and ostracised.

Bela’s own family stopped seeing her because of her leprosy – she wasn’t even invited to her sister’s wedding. She felt so rejected and unhappy with her lonely life. In the beginning, her sons didn’t know anything about leprosy either, so they were extremely wary and refused to sit near her a lot of the time.

Bela first started to notice she had a problem when she started to get a burning sensation in her hands. Then she gradually began to lose all feeling in them. She was worried that it would be something serious, so she visited the nearby government hospital, which diagnosed her and referred her to Naini Hospital where they knew she would get the specialist care she needed. There, she was given multidrug therapy (MDT), which cured her leprosy. The ulcers she had developed as a result of the disease were also treated.

At the time the family were living in a ramshackle hut made from sticks and cow dung. The lack of a door meant animals wandered freely through the house. It made cooking food very difficult and it didn’t help their status in the village. Already affected by leprosy stigma that meant unkind jibes from neighbours, they felt isolated and ashamed by their living conditions.

“It created so much tension within our family and relationships because we became stressed and angry at the way we were being treated and would often shout at each other,” said Bela.

“The state of the shack only made things worse. In the rainy season, the water would come pouring in and ruin our clothes and beds. Food would spoil and we would have to keep repairing the roof.”

Siphi with his sons in their new home.
Siphi with his sons.

As if this wasn’t bad enough, when the effects of Bela’s leprosy became visible, the couple made a very tough decision which might be hard to understand. They agreed that Bela would live in the small shed where they dried and stored the cow dung they use as fuel. She ate with her own separate set of utensils, and her children wouldn’t even use the same bar of soap as their mother, so deep was their fear of leprosy.

The decision was made to protect the whole family from the judgement from the other villagers. It broke my heart to hear about the sacrifice Bela made for her family.

As Leprosy Mission staff assessed Bela’s situation, they decided the family would benefit from a new house. But it was on a community officer’s follow-up visit that we became aware of the heartbreaking decision the family had made. As a result we set up an awareness-raising programme in the village to try and educate the community about the realities of leprosy.

Siphi said that over time, people have become kinder towards the family as they have begun to understand more about leprosy. The couple decided it was now safe for Bela to live with the rest of the family again, in their new and improved home.

The bricks for Bela and Siphi’s cost around 7,000 rupees (Rs), which is around £70. Bags of cement are 300Rs each which is about £3. They used 55 bags which comes to around 16,500Rs (approximately £165). All other materials such as roofing, metal bars, wooden structures, doors and windows brought the total to 125,000Rs, or roughly £1,300. Siphi is a builder, and his sons and some neighbours helped him construct the house, meaning they did not have to pay for labour. It struck me how much of ‘drop in the ocean’ this is compared to a house here in England.

Siphi stands outside his new home
Siphi stands outside his new home

Siphi and Bela were thrilled with their new home.

“There is very little tension in our family now,” said Bela. “People will come and spend time in our home and I can start trying to do housework again. My children will sit next to me and I can be close with my family once again. I have my family back.”

It was so wonderful to see this family accepted by their community, full of pride and hopeful about their future. It really brought home to me why the awareness-raising work done in India is so vital. There are still so many negative attitudes towards leprosy, and these ingrained beliefs take time to change. With your help, this is happening – and changing the lives of people like Siphi and Bela.