A Qualitative Study of Experiences of Aboriginal Caregivers of Children with Developmental Disabilities

A qualitative study of 20 caregivers of Aboriginal children with developmental disabilities revealed that caregivers continue to be guided by values rooted in traditional Aboriginal societies where all children were considered gifts of the Creator. The lives of vulnerable children had purpose, they were treated with respect, and the self-growth of the caregiver was connected to care of the child. The needs of young families were supported within a web of relationships in family and community. Disruptions to traditional family relationships began in the colonial era with the negation of Aboriginal culture and spirituality, and continue in many communities in ongoing cycles of trauma exacerbated by rapid change. These ruptures to traditional family life have led to reliance by caregivers on medical, social, and educational services based on Euro-Canadian values regarding developmental disability, which have been rooted in negative concepts since the Enlightenment. This research synthesizes Aboriginal ways of knowing and Western academic inquiry within a conceptual framework guided by a metaphor of “weaving.” The intersection of marginality and trauma together with negative attitudes to individuals with developmental disabilities in Canadian society gives insight into the experience of caregivers. Presented in story form, the findings provide an incisive critique of a society that views individuals with developmental disabilities as of less worth than others, and also trace a profoundly disturbing picture of the larger experience of what it is to be Aboriginal in Canada today. The findings also reveal the impact these societal realities have on a very vulnerable group of Canadian children who are disabled at disproportionately high rates