Written by Katharine Jones, The Leprosy Mission England and Wales.
What does Community Engagement mean for The Leprosy Mission?
The Leprosy Mission England and Wales were delighted to receive an award for Community Engagement at the recent International Society for Neglected Tropical Diseases (ISNTD) Festival held at the Barbican in London. But what does this mean?
How do we support community engagement?
We support our national partners to tackle stigma and raise leprosy awareness through local community awareness groups and campaigns.
All our programmes contain elements of community engagement in one way or another. This might be in the form of an advocacy group or a skills group (sewing for example) where groups of people come together and share and explore everyday experiences or learn about rights.
Our role is to support the facilitation of the groups with the global TLM programme officers, who build up the groups often with the aid of a champion who has been identified as having a strong desire to improve their circumstances or “better themselves!” These champions seed the community to share, learn and support.
For example, our partner in Sri Lanka, KKM (Kaveri Kala Manram) uses dance and drama to engage with the community, to remove the focus from leprosy and to bring the community together. Stigma is reduced by the realisation and recognition on the part of the participants that people affected by leprosy are capable of enjoying everyday life and engaging with others.
TLM Nigeria has funded and created a video to tell the story of people affected by leprosy to encourage communities to become aware of their own response. Don’t Cry for Barbara is a four part Nollywood series that tells the moving story of Barbara and her family. As a young girl, Barbara discovers that her beloved father has leprosy and is devastated when her mother tells him not to go near his daughter. The video raises awareness of leprosy from the perspective of someone who has been indirectly affected by leprosy and this encourages people to tackle myths and fears.
The Drama Group pictured above have been employed by CALL (Challenging Anti-Leprosy Legislation, a TLM programme in India) to raise awareness about leprosy and leprosy-related human rights. Before this they did not have any knowledge about leprosy and feared the disease. Now they are happy working with people affected by leprosy and keen to break down the stigma associated with the disease. They have observed attitude changes as people are more willing to question as to whether the symptoms they have could be leprosy and gradually there is more social interaction between communities.
Another important aspect of community engagement is that it brings people affected by leprosy together so they do not feel as though they are alone in their diagnosis. Self-care groups often meet every week and so the individuals talk, drink tea and realise that they are not alone.
TLM England and Wales Programmes Officer, Shabina Sadiq concludes: “It is a very enjoyable part of my job to see the results of community engagement which is why we will continue to support this endeavour.”
Katharine Jones works as Media and Advocacy Officer for The Leprosy Mission England and Wales which she joined in 2017. She is focused on external communications, advocacy, raising the awareness of leprosy and cross-cutting issues linked with NTDs. Previously she worked for the international anti-leprosy federation, ILEP, in Geneva. She worked in PR and communications for a variety of organisations in the biotech and pharmaceutical sector before moving into the NGO/not-for-profit sector. Katharine is a committed Christian and also loves choral singing, skiing and her husband.