Full project title:
Social exlusion/inclusion and livelihood status of leprosy affected people in Nepal

Project coordination
Rehabilitation, Empowerment and Development (READ) Nepal

Partners
NLR Nepal

Aim: The pilot study gives an overview of the situation regarding social exclusion/inclusion of leprosy affected people in two high endemic districts in Nepal: Udayapur and Jhapa.

Final project summary
The purpose of this study was to create an overview of the situation regarding social exclusion/inclusion of leprosy affected people in the two most leprosy endemic districts of Nepal, Udayapur and Jhapa. Particularly, this project aimed to find out whether the livelihood status of leprosy affected people is different from that of others. This study also aimed at exploring some of the major socio-economic and cultural barriers that might have hindered leprosy-affected persons’ access to health services, rehabilitation programme, education, employment, livelihood opportunities and to social participation.

Several important observations have been made during this study. For instance, this study shows that while direct physical social exclusion of people affected by leprosy is rare, the practice of social exclusion and participation restrictions on them exists in the community in less visible forms. The exclusion and asymmetry of relationships are more prevalent in the realm of mental behaviour rather than physical actions. For example, the fear of stigmatisation, which seems to be rooted in certain religious orthodoxy, has constrained the participation of people affected by leprosy in socio-cultural life.

When the study refers to the exclusion and restriction of people affected by leprosy, it does not mean physical obstruction created by family and community members. Instead, the data shows that some social and religious practices, such as performing 'purans' and the practice of reading 'Swasthani Brata Katha,' are major social and cultural practices contributing to the stigmatisation of leprosy and those affected by it. This can be seen as a socio-cultural process through which people internalise leprosy, create meanings, and define and interpret the condition. As a result, this process forms the perception of reality for most people in society. Consequently, such processes have led to feelings of self-inferiority, sadness, frustration, loss of confidence, devaluation of their own capacity, stress, and hopelessness.

The study has indicated that this invisible form of stigmatisation has resulted in an invisible form of exclusion and inclusion, which, as the results show, has limited the access of people affected by leprosy to health programs, employment, livelihood opportunities, and other resources available at the local level. The research findings also show that some people affected by leprosy have converted to Christianity as a resistance strategy. It will be equally important for future investigations to explore how people affected by leprosy resist such socio-cultural processes by adopting various strategies that shape their lives and redefine the meaning of leprosy itself.