Linked to the Self Care Training and the Self Care Cells that have grown out of it has been the establishment of Self-help Groups to enable those re-adjusting to everyday life to meet challenges together. These groups have become effective at reducing stigma in their communities, and bringing development and successful income generation activity to the group members. They also encourage new cases of leprosy to report for treatment and even detect a significant number of new cases themselves. The Stigma Elimination Programme – or STEP for short – began in 2002 as a pilot project. The 10 Groups established at that time are still functioning and in most cases are now independent NGOs in their own right and support newer groups as they become established. These groups are a major success story and have played a key role in reducing the stigma of leprosy in their communities. Evaluations carried out in 2005, after the pilot project, showed conclusively that people previously unable to participate in community life due to ostracism caused by leprosy, were almost fully integrated again after the STEP programme.
As a part of the STEP programme, pioneering Community-Based Empowerment and Rehabilitation activities are helping people marginalised as a result of leprosy to become the principal agents of change in issues affecting their own lives. As they begin to play significant roles in their communities, their status is enhanced, helping reduce the stigma of leprosy. The leader of one of the early groups, Mr Muslim, was honoured at government level in 2010 with a national award for his services to reducing stigma against people affected by leprosy. Another group leader, Mainudin Dafali, whose group is pictured above, was awarded the Wellesley Bailey Award in 2011 by The Leprosy Mission International, for his achievements. Mainudin was badly disabled by leprosy, but did much work to improve the conditions of his group members and his community. He sadly passed away from cancer in April of 2021.
There are now over 100 of these groups working, involving over 2500 people directly, and affecting many more than that. Many groups have invited people with other kinds of disability to join them as well so that in many groups, about 30% of group members do not have leprosy themselves.
RECLAIM was the next “generation” of STEP taking the community work to a new level with a strong focus on advocacy and a rights-based agenda for people with disability. Like STEP it worked through Self Help Groups and continued to develop these, producing another 50 groups on top of the 50 had already been established. Funded by donors with a strong interest in leprosy and a focus on working amongst communities to reduce poverty and stigma, RECLAIM established about 10 new Self Help Groups each year and completed in 2016. It ensured that disabled people, and particularly those disabled by leprosy, were able to initiate and participate in activities that reduce poverty, and were working to realize the rights of people with disabilities, as set out by the UN Convention. From this, we have seen a “ripple effect” as more communities have changed their attitudes about leprosy, and other disability. These groups continue to be a key to helping leprosy be eliminated in the Nepal Terai regions, and people with disabilities being able to enjoy a more fulfilling life.
From 2016, we have worked with the self help groups to strengthen them, making them more independent and effective in their work to reduce stigma, poverty, and discrimination, and more able to advocate for marginalised people in more ways. This develops the best of our experience in RECLAIM and the Village Alive Programme, consolidating the work done so far. This was positive, certainly up until COVID-19 made things much harder, and most of the 113 groups established were still functioning and benefiting many people. There is now some catching up to do as we work to regain contacts lost through lock-downs and limited travel opportunity during the last two years.
Alongside the self-help group work has been the very successful and growing Village Alive Programme which has worked with 14 villages so far and will add a further five new villages to its work through 2021 and beyond. Village Alive continues to carry our accumulated experience of working with groups into the wider village context and is lifting communities out of extreme poverty and very poor health and education levels and general dysfunction, into a place where people are working together with enthusiasm to improve conditions in every way. This work is led by self help group members who are affected by leprosy, and so there is a very strong stigma elimination component to the work. Key improvements achieved are in education, sanitation, clean water, health – especially for mothers and children, and village infrastructure and cleanliness. This work continues to be exciting and rewarding and is bringing transformation to many lives.