Voices from a Leprosy Colony: A Critical Ethnography of the Impacts of Community Empowerment and Social Inclusion Program at Sitanala Leprosy Village, Indonesia

This research is focused on exploring the experiences of persons affected by leprosy who live in Sitanala Leprosy Village in Indonesia; in order to analyse and develop an understanding of how they give meaning to the community empowerment and social inclusion (CESI) program in that place. Qualitative, ethnographic, and observational research methods were used to collect the field data. Ethnographic and content analysis shows various causes and types of discrimination and disadvantage experienced by the people affected by leprosy. The nature and depth of disadvantage is extreme, and many state-provided services have not helped to improve their conditions to the extent they should have. The main findings in relation to the implementation of CESI program were: (a) people affected by leprosy encounter significant systemic barriers to full inclusion and participation in their community; (b) the barriers that prevented full participation in society ranged from social to physical; (c) inflexible laws, policies and practices play an important role in making the barriers more cultural and systemic; and (d) the dominance of moral and medical models make the barriers difficult to eliminate. Further, the analysis shows that lack of information of their disability and rights contribute to perpetuating the existing barriers. Finally, this research found that paternalism and unqualified community workers contribute to lowering the impacts of CESI programs in Sitanala. The findings have implications for all stakeholders, including government, non-government organisations and private sectors to provide a wider support through empowering and anti-discriminatory approaches.