Keeping leprosy-affected people and those with disabilities at the heart of development programmes

Momina from Bangladesh
Momina from Bangladesh

It is important to not to view leprosy as an isolated problem in terms of development. It is our desire to see leprosy-affected and disabled people included in mainstream and Neglected Tropical Disease-specific development programmes so that they can reap the same benefits from government aid programmes as their able-bodied counterparts. Yet many NGOs and programmes do not include disability, with claims that it is too expensive, does not offer value for money or due to a lack of expertise.

Recent research carried out by The Leprosy Mission England and Wales with more than 5,000 leprosy-affected people from nine countries across Africa and Asia revealed that although they had seen changes around them, they did not feel they had benefited from the Millennium Development Goals.

The UN Convention on the rights of persons with disabilities states that disabled people have equal rights and must be included in development processes. 2015 brings the global challenge to develop Sustainable Development Goals that will not just halve poverty and reduce associated with it as the Millennium Development Goals attempt but to create goals which will include all to ensure that no one is left behind (United Nations General Assembly 2014).

One billion people globally are disabled, 80 per cent of which live in developing countries (DfID 2014).  We know that permanent disability is a reality for many of the 1.5 billion people living with the consequences of NTDs.

The EC-funded Food Security for the Ultra Poor in Bangladesh was run by a consortium of NGOs is a good example of disability-inclusive development. The Leprosy Mission provided technical expertise and spearheaded the leprosy and disability components of this life-changing project which has seen more than 900 leprosy-affected families (out of a total of 40,000 beneficiaries) benefit from a new source of income. The majority are women-headed families, some as a result of their husbands being unable to work because of leprosy-caused disabilities. Others are leprosy-affected women like Momina desperately needing an income. Disabled women are doubly disadvantaged and subject to high levels of abuse (DfID, 2014).

Coming from the Gaibandha district of Northern Bangladesh, 50-year-old Momina’s husband divorced her on hearing she had leprosy, taking with him their son and three daughters.

Despite being shunned by villagers, her brother gave her a place to stay. Her feet are numb as a result of leprosy-caused nerve damage and she cannot walk far without developing ulcers that, if they become infected, could result in her lower legs being amputated. This greatly limits her earning capacity. But Momina wants to work, not least to repay the debt she feels she owes her brother.

As part of the Food Security for the Ultra-Poor project, Momina was given 10 chickens, a goat and a cow. The chickens have produced 12 chicks and the goat two kids. She is able to sell eggs and milk and says she is “able to hold her head high” in the community. She is also benefiting from the camaraderie of being part of a 26-member women’s support group. She even has 600 Taka (around £5) worth of personal savings as part of a self-help group cooperative, enough to support her when she next hits tough times.

As well as livelihood activities, the project provided rehabilitation services including physiotherapy, Occupational Therapy and the provision of assistive devices including protective footwear, wheelchair and crutches. A total of 70 per cent of people who received these services noticed positive changes in their ability to perform livelihood activities. Crucially many women stopped begging as a result and disabled women stated that working was empowering and meant they were more respected by their family as they were able to contribute to the family income. Many disabled women took on leadership roles within their group and 251 disabled women were included as members of federation committees.

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STORIES FROM MYANMAR: Kyaw

Kyaw

U. Kyaw Myuu 48, is a farmer who now lives as a tenant on a farm outside Shwebo with his wife Ma San.  They both work in the fields, picking rice.  This is sad change in their circumstances from a time when their family owned property in the town of Shwebo and farmed their own land.  It all changed for Kyaw when he had leprosy.  Since that time his family has been saddened to have had three brothers affected by leprosy and one die of cancer.  Their mother, who passed away six months ago, also had leprosy.

Kyaw was only 12 years old when a medical screening programme visited his school and a health care worker noticed white patches on his arms and referred him to a hospital in Mandalay.  We journeyed from Mandalay yesterday in a new vehicle on improved roads and the bumpy, dusty, journey still took over three hours.  The overcrowded bus that took him and his uncle to the hospital would have been painfully slow.  The treatment he then received upon confirmation of leprosy was also slow to work as it predated multidrug therapy (MDT) and was sulphur-based.  Consequently his hands started to claw and numbness set in and after the age of 18 he was unable to either work or continue his studies.  This was a bitter blow to a man, who, having spent time speaking with him today, clearly possesses a keenly intelligent and analytic mind.

What makes Kyaw’s story stand out for me is that he took it upon himself to straighten out his own clawed fingers.  Devising temporary bamboo splints that he applied only at night so that none of the other villagers would see, he managed to counteract the clawing after only three months.  He also faithfully followed all advice from the doctors and physiotherapists and diligently tended to his ulcers, secondary reaction to drugs and problems through self-care.  This process still meant that for nearly 20 years he was unable to work regularly or earn a living and with the added burden to his family of having three brothers with leprosy, a mother who had leprosy, and a  father who died of a heart attack, they were unable to keep their land, status and livelihoods.

However, he is not bitter.  He has been married since the age of 19 and his wife is still dearly devoted to him. Their two daughters aged 22 and 24 are both at University studying for Law Degrees and he acts as a local advocate, encouraging people affected by leprosy not to lose heart, to take their medicines and practice self-care. Kyaw said: “When I was a child and my mother had leprosy, a local man, who had also been diagnosed with the disease drank pesticide and killed himself after hearing of the diagnosis.  When I had the news that I had leprosy I decided I would instead drink the medicine I was given and do everything I could to get better and do the positive things. I still do.”

 

JENNY’S NEPAL BLOG: HELPING OTHERS TO HELP THEMSELVES

Painting by Jenny Hawke
Painting by Jenny Hawke

Today we had a rather bumpy three-hour drive up into the hilly region of Nepal, the foothills of the Himalayas, to see a self-help group which has completely transformed its community.

Four years ago this area was noted to have a high number of leprosy cases so The Leprosy Mission went in and helped 23 leprosy affected people to set up a self-help group. The group received start-up money and then went on to loan its members money to start their own businesses, buy a buffalo or some chickens, or even open a shop! Before they began there was a lot of fear about leprosy. They weren’t allowed to use the village water tap. Now they are thriving with 55 members and have become friends with the surrounding community which has also benefited from their success.

One particular young woman, Nirmaya, contracted leprosy aged 13 but because her father had already had the disease, he recognised the symptoms and sent her off to the nearby TLM clinic where she received the drugs to cure her. She completed some schooling but ran out of money and had to leave. This was when her leprosy symptoms returned, either because she hadn’t been careful enough to finish the whole course of treatment previously, or because she is one of the rare cases to catch leprosy twice. She was treated again successfully but sadly her husband left her. Struggling with a small son to bring up, she was there at the beginning of the self-help group and benefited enormously from it. She now grows her own vegetables to sell in the market together with the milk from the buffalo she bought with the loan from the self-help group. She has finished school, funded by a scholarship from the group, and her son has also been awarded a scholarship too. An independent and courageous woman, she is now treasurer of the group.

This group has been so successful that they are now registered with the Government’s co-operative scheme, and are completely self-sufficient! This is what is so precious about the work of the Mission. It’s not just about curing the disease, it’s about rebuilding lives and transforming communities.

I feel very privileged to be here.