Exploring grassroots leprosy organisations : is social inclusion and empowerment possible for members? : case studies in Ethiopia and China : a thesis presented in partial fulfilment of the requirements for the degree of Master of Philosophy in Development Studies at Massey University
This thesis explores reasons for the recent emergence of grassroots leprosy organisations and through case studies of two such organisations, ENAELP in Ethiopia and HANDA in China, shows that varying measures of social inclusion and empowerment are achievable by members working collectively and in solidarity. Two major factors contributing to the emergence of these organisations are the common experience of leprosy plus the failure of welfare programmes, both of which provide significant impetus to members for collective action. The key to success for a grassroots leprosy organisation is recognising the importance of operating with a participatory development approach which attributes equal importance to processes and results, cultivating a strong sense of ownership by members and opening the way to the empowering journey of self-determination. While some international anti-leprosy organisations cling to assumptions that decision-making and self-determination by leprosy affected people for themselves is not possible, others strongly support these grassroots endeavours. Although leprosy has been a scourge and a source of fear for thousands of years with social exclusion and disempowerment resulting for millions of people, this thesis concludes that grassroots leprosy organisations have the potential to transform historical perceptions of the disease. In addition, these organisations provide opportunities for leprosy-affected people to demonstrate how they wish society to regard and consider them. This thesis did not take a static view of social inclusion and empowerment, but rather analysed changes in terms of how they are moving towards these two inter-related goals. There is no doubt that movement towards both social inclusion and empowerment is occurring, showing that the finest struggles with the best results are those fought by oppressed people themselves (Freire, 1989).