African‐American Developmental Disability Discourses: Implications for Policy Development

  Formal developmental disabilities services are often underutilized, especially by low‐income African‐American families. This study examined the basis for interactions and service use preferences of African‐American woman who cared for an adult female child with a disability. Diverse African‐American perspectives were observed by analyzing the discourse of 11 low‐income African‐American carers using a direct informant interview technique. Two distinct discourses were identified: a “secular professional” discourse and a “spiritual kin” discourse. Families using the secular professional discourse made use of formal developmental disabilities services in a manner similar to European‐American heritage families. Families using the spiritual kin discourse tended to rely on natural or informal supports rather than the developmental disabilities service system, as the system did not exemplify the values that these families profess. It was observed that the discourses result in two distinct worldviews, and two distinct ways of accessing the developmental disabilities system. Recommendations are proffered for changes within the developmental disabilities service system to accommodate diverse cultures and families. A key recommendation involves modifying the system to accommodate worldviews of disability other than the currently used scientific biomedical view.