The Experience of Disability from the Perspective of Parents of Children with Profound Impairment: Is it time for an alternative model of disability?

Abstract

This article considers the significance of a model of disability in relation to the child with profound impairment and examines the individual and social models of disability in connection with this. It is argued that although these two models cannot be completely dismissed, the models largely ignore the experience and perspective of the profoundly impaired child, their parent(s) and family. Following in-depth interviews with four parents I attempted to elicit the experience of disability from this perspective. I invited the parents to tell me the ways in which they experience disability, how they viewed the nature and cause of disability in their lives and the relationship between themselves and the various professionals involved in the care of their child. This article endeavours to implement the interview 'findings' to inform an alternative model of disability, the 'Alliance' model, which is briefly discussed and critiqued.