An ethnography of joy, satisfaction and challenge: subjective wellbeing and occupational justice for disabled children and youth in South Africa

Children and youths with disabilities, particularly those with complex communication needs, are at the centre of this longitudinal ethnographic study. In contexts like South Africa, the study setting, social exclusion, poverty, and ableism profoundly limit access to critical services, resulting in poorer outcomes across the life course for these young people. Most related research and intervention focuses on deficit and basic survival. This persistent emphasis on difficulty, however, overshadows other aspects of the lives of these young people - and when non-disabled decision-makers cannot see beyond disabled children's struggles, their limited expectations constrain what is possible. Additionally, the persistent exclusion of young people with intellectual and developmental disabilities from direct research participation, ostensibly to “protect” them, impedes understanding of their needs and preferences. Combining observation and participatory in-depth data collection, I will work with various initiatives focused on psychosocial and physical wellbeing for children and youths with intellectual and developmental disabilities, and their members. My aim is to generate co-created knowledge about what makes life feel satisfying and fulfilling for these young people, and to affirm that while material deprivation must be addressed, meaning, belonging, and connectedness are also critical (but often deprioritised) determinants of their health and wellbeing.