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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