Disability stigma resistance by parents at the intersection of psychosocial and structural levels

Abstract

In this paper we define and argue for the salience of the concept of ‘project stigma’ in the context of long-term illness and disability. In the opening section we briefly review the literature on long-term illness and disability as ‘personal tragedy’ and go on to discuss critiques of this limited and limiting narrative from disability theorists and, belatedly, medical sociologists. This prepares the ground for conceptual innovation around the notion of project stigma. This, in turn, is explored using a qualitative study of 63 parents of children with Down Syndrome and Autism conducted in North-West Italy. The paper closes by outlining and commending a programme of research arising out of a series of ideal types of modes of stigma resistance and its enactment that highlights important but neglected issues of stigma resistance at both psychosocial and structural levels.