"I Like to Play with My Friends": Children with Spina Bifida and Belonging in Uganda

Abstract

This paper describes experiences of living and belonging from the perspectives of Ugandan children with spina bifida and their siblings and parents. We explored belonging at micro, meso and macro level taking into consideration African Childhood Disability Studies, central concepts of family, cultural conceptions of disability, poverty, and the notion of ‘ubuntu’, and using child-friendly culturally adjusted interview methods including play. Whilst children with spina bifida had a strong sense of belonging at household level, they experienced more difficulties engaging in larger social networks, including school. Poverty and stigma were important barriers to inclusion. We propose strengthening the network at family level, where the environment is more enabling for the children to find a place of belonging and support, and expanding investment and awareness at community and national level. (author's abstract)