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

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  • Scavarda, Alice
  • Scambler, Graham

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.

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  • Scavarda, Alice & Scambler, Graham, 2025. "Disability stigma resistance by parents at the intersection of psychosocial and structural levels," Social Science & Medicine, Elsevier, vol. 376(C).
    • Handle: RePEc:eee:socmed:v:376:y:2025:i:c:s0277953625004277
    DOI: 10.1016/j.socscimed.2025.118097
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    1. McKeever, Patricia & Miller, Karen-Lee, 2004. "Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices," Social Science & Medicine, Elsevier, vol. 59(6), pages 1177-1191, September.
    2. Parker, Richard & Aggleton, Peter, 2003. "HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action," Social Science & Medicine, Elsevier, vol. 57(1), pages 13-24, July.
    3. Scavarda, Alice & Ariel Cascio, M., 2022. "Embracing and rejecting the medicalization of autism in Italy," Social Science & Medicine, Elsevier, vol. 294(C).
    4. Manago, Bianca & Davis, Jenny L. & Goar, Carla, 2017. "Discourse in Action: Parents’ use of medical and social models to resist disability stigma," Social Science & Medicine, Elsevier, vol. 184(C), pages 169-177.
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