Work

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

Year: 2025

Type: article

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. • The concept of stigma resistance has received little scholarly attention. • Parents of children with Autism and Down Syndrome drawn on medical language to resist stigma. • When they don't use medical language, they draw on the idea of “normality”. • They foster their disempowerment, by using mainstream discursive repertoires. • The strategies they use have broad applicability to the sociology of stigma.

Source: Social Science & Medicine

DOI: 10.1016/j.socscimed.2025.118097

Authors: Alice Scavarda, Graham Scambler

Institutions: University of Turin, University College London

Language: English

Topic: Disability Rights and Representation

Subfield: Safety Research

Field: Social Sciences

Domain: Social Sciences

SDGs: Good health and well-being, Reduced inequalities

Open Access status: hybrid

Estimated APC paid: $3,800