July 24, 2017
Many ILEP Members are familiar with the challenge of ensuring disability rights, high quality rehabilitation and healthcare services for people affected by leprosy in low endemic settings. ILEP project coordinator Pim Kuipers recently visited Myanmar to learn how The Leprosy Mission Myanmar (TLMM) is rising to that challenge by becoming a national leader in disability services, influencing services and planning across the whole country.
In some countries, the number of people newly diagnosed with leprosy is now quite low, but there are still substantial numbers of people with permanent leprosy-related disabilities, or who experience the follow-on consequences of leprosy. The number of people affected may thus be substantial, but they are often spread widely across a large country like Myanmar and represent a relatively small proportion of the 10-15% of the population in developing countries who have disabilities.
Where the relative numbers of people affected by leprosy are low, ILEP Members strive to provide meaningful services to the people affected and still be responsible stewards of funding. These organisations are keenly aware that people affected by leprosy experience profound disadvantage and discrimination (often even within disability circles) and may need specific supports.
The TLMM approach
By actively putting their concerns and needs onto the national disability agenda in Myanmar, TLMM ensures that people affected by leprosy are not going to be ignored. They continually seek service development and funding opportunities on issues like disability services, human rights, early childhood intervention, or improving livelihoods; and when they do, they ensure that the issues of people affected by leprosy are incorporated.
The initiatives they undertake are inclusive of all people with disabilities, but they also make sure that each action includes services for people affected by leprosy, and that it highlights the needs of people affected by leprosy.
Dr Zaw Moe Aung, TLMM Country Director, said that by becoming the ‘go to’ organisation for all sorts of disability-related services in Myanmar, they can ensure that the focus remains on people affected by leprosy. Indeed their breadth of focus includes activities like combining the benefits of specialist prosthetic services for those injured by landmines with the needs of leprosy-affected amputees, as well as ensuring mainstream microfinance loans for all citizens, regardless of disability.
However, the benefits of this inclusive approach also extend to the quality of services and to staffing. Dr Zaw explained that as a fast-growing and active team, they are more likely to attract and retain high quality staff if they ensure that their work is at the cutting edge of contemporary development services. Staff remain challenged and engaged. While there is some risk that without specialist leprosy services some of the needs of people affected by leprosy might “fall through the gaps”, the alternative of dwindling services, loss of staff and diminishing resources is far less desirable.
Working alongside people affected by leprosy to become integral leaders in the area of disability and development, and to advocate for themselves, are far better goals.