Storying Disability and Impairment: Retrospective Accounts of Disabled Family Life

Abstract

Much previous British research on disability and its effects on family life has seen impairment as a personal or family tragedy. In this article, the authors describe current English research that is asking families about their experiences of professional health and social care support since the birth of their disabled child. Interviews with the families uncovered a range of themes that challenged the personal tragedy approach. Far from being passive recipients of care, these are ordinary families seeking appropriate information from professionals to support them in their ordinary parenting role. For them, the professionalized care service should be based on negotiated relationships of equality that give respect to parental perspectives on what is right for their child. The authors conclude that these data are useful in describing ongoing barriers to enabling care provision and in offering a positive view of disabled family life.