Going forward, there is a need to reach out to more colonies and households.
|Dinesh Trivedi, MP (2nd from L) speaks at S-ILF’s 10th anniversary.|
Sasakawa-India Leprosy Foundation (S-ILF) was established in 2006 to assist people affected by leprosy to regain their dignity as productive and accepted members of mainstream society. With a focus on economic and social empowerment and ending reliance on begging, it supports the goal of sustainable transformation in the lives of those affected by the disease and the lives of their children.
Looking back over our first decade, I take satisfaction in the hope and confidence in the future that we have been able to nurture. Through small grants and assistance in setting up micro-enterprises, we have supported people in their quest for dignity and sustainable livelihoods.
But more than that, we have helped to reduce self-stigma and given people the confidence to create a better life. This has come about through opportunities for interactions with different groups outside communities of the leprosy affected, be it at capacity-building workshops or in business transactions.
In addition, both our scholarship programs for higher education and our skills training workshops leading to employment have helped to assuage anxieties of parents about their children’s future and, at the same time, have motivated young people to dream of a brighter tomorrow.
From the outset we had a mandate, but no preconceived notions about how to fulfill it. Our program focus was derived in consultation with the Association of People Affected by Leprosy, or APAL (originally known as the National Forum) and evolved with the needs and demands of the situation on the ground. We could have started with a geographical focus or by taking up more than one project per leprosy colony, as this would have been easier for us. However, this would have meant covering less colonies, which would have led some states or colonies to feel left out and made the convergence to a partnership with S-ILF more difficult.
With the benefit of hindsight, perhaps we could have begun the process of scaling up our work a couple of years earlier. To date we have been able to reach out to only a third of the 800 or so self-settled leprosy colonies that exist in India. Meanwhile, our outreach to people affected by leprosy living in the wider community is minimal: we need to do more to step into the advocacy arena to ensure their participation in government welfare schemes, thereby facilitating their social and economic integration into the mainstream.
Going forward, S-ILF is looking to reach more households in more colonies in more states. We also want to bring more children into our scholarship schemes or into those of the government, to ensure that no child is deprived of an opportunity to pursue higher studies or learn skills that will help in breaking out of the cycle of poverty and stigma that his or her parents have been through.
In addition, we want to push for better policies through the Forum of Parliamentarians to Free India of Leprosy, whose cross-party members are committed to using their good office and influence to raise awareness about leprosy and bring about positive change for people affected by the disease. This they do by facilitating access to government schemes, pushing for change in the legal/policy framework that still discriminates on the basis of leprosy and by publicly supporting people’s efforts to live with dignity.
I am happy that we have been able to win the trust and confidence of people affected by leprosy and their leaders as a credible partner in their efforts to improve their lives. We now aim to further strengthen those ties as we work together for an India free of leprosy and the discrimination associated with it.
Dr. Vineeta Shanker is Executive Director of Sasakawa-India Leprosy Foundation.