It has been a pleasure to coauthor a paper on stigma resistance in Social Science and Medicine with Italian sociologist Alice Scavarda. Fortunately, this is an open access contribution (SSM 376 (2025) 118097). It is not my intention here to offer a summary of the findings from Alice’s study of the parents of children with Autism and Down Syndrome conducted in Piedmont, Italy, or of our analysis and discussion of its findings. I want rather to dwell on some of the issues we raised in the closing sections of the paper.
Our aim was to delve – empirically and theoretically – into what I have previously referred to as ‘project stigma’, namely, how people with behaviours, traits or conditions commonly regarded as stigmatising can and do resist any notion that they are undesirably or unacceptably different. In Alice’s investigation, attention was directed not at possessors of a putative stigma, but at their parents. Parents, numbered amongst those Goffman named ‘the wise’ typically faced stigma by association (Goffman’s ‘courtesy stigma’). Our paper was oriented to the various ways they resisted, side-stepped or outright rejected any notion that they or their children with Autism or Downs Syndrome should accept stigmatised identities.
We distinguished between and illustrated from Alice’s data: (i) a ‘first level’ of neutralisation and instrumental telling, and (ii) a ‘second level’ of normalisation and medicalisation. But in this brief blog my focus is matters broached in our discussion. Here we delineated several dimensions of stigma resistance that might be of interest to future researchers in the field. The focus was on the diverse strategies and tactics parents deployed, ‘either reflexively or spontaneously’.
Resistance to stigma – that is, my concept of project stigma – can, first, vary along an axis from active topassive. For example, instrumental telling (or limited, carefully planned disclosure) is a more engaged or active strategy than neutralisation (or explaining away others’ attitudes as understandable ignorance).
A second dimension we identified ranged from orthodox to unorthodox. Parents regarded as orthodox accepted the authority of medical expertise (and therefore the diagnoses of Autism and Downs Syndrome). They were most likely to adopt instrumental telling and medicalisation. Parents described as unorthodox on the other hand query and distance themselves from – or even reject – orthodox biomedical perspectives (eg those who adopt normalisation strategies).
A third dimension or axis ranges from narrative-based to event-based. The former refers to a settled, rehearsed and sometimes tried-and-tested strategy or set of tactics to repulse any threats of enacted (actively discriminatory) or felt (internalised) stigma. The latter, by contrast, suggests a less complex and coherent, or more flexible and spontaneous mode of response to threats of stigmatisation as they arise in social intercourse, ‘event by event’. One viable hypothesis would be that parents inclined towards narrative-based resistance are predisposed to be more active than passive across different social contexts.
A fourth dimension/axis we considered reflected the degree of variation in the nature and extent of resistance to stigmatisation. It ran from interactional to political resistance. Interactional resistance is focused on actual (or occasionally virtual) encounters with others, while political resistance refers to a campaigning orientation to contest what is perceived as an able-bodied, discriminatory and oppressive treatment of ‘the physically or mentally disabled’ (encompassing those with Autism and Downs Syndrome). Parents in Alice’s study who were committed to political resistance had a predilection to be active (indeed proactive) and narrative-based.
The delineation of this quartet of dimensions or axes led us to suggest a series of Weberian ideal types that might possibly inform future studies of health-related stigma. We suggested a trio of ways of grounding non-compliant’ ‘project stigma or stigma resistance which might indeed have a research resonance beyond stigma studies.
Compliance Versus Three Modes of Resistance
| COMPLIANT | Tending towards:
passive, orthodox, event interactional. |
Unlike those displaying any form of resistance the ‘compliant’ have a passive orientation to normative biomedicine and to living with Down Syndrome and/or Autism. They take each event as it comes and tend to defer at the interactional level. |
| SPONTANEOUS | Tending towards:
active orthodox/unorthodox, event interactional. |
The ‘spontaneous’ are not constrained by passivity bit do not have a plan, may vary or be inconsistent in their degree of commitment to biomedical orthodoxy, and are bound by the limits of the interactional level. |
| REFLECTIVE | Tending towards:
active orthodox narrative interactional |
The ‘reflective’ retain an open and appraising orientation to normative biomedicine, have the outline of a plan for coping with Down Syndrome and/or Autism, but all this is retained at the interactional level. |
| ACTIVE | Tending towards:
active unorthodox narrative political |
The ‘active’ are set apart from the others because they are not constrained by biomedical orthodoxy or by expert advice on living with Down Syndrome and/or Autism, have their own clear narrative on aims and objectives, and are explicitly political in their understanding of social difference. |
While for many years medical sociology focused attention on SPONTANEOUS and ACTIVE resistance (as well of course on COMPLIANCE), the emergence of disability theory and practice rightly occasioned a belated shift in perspective to embraced ACTIVE resistance.
As I said at the outset, the paper in which we broached these ideas is open access in Social Science and Medicine, so the limited summary offered in this blog can be complemented. The data from Alice’s study is presented there in some detail. If this blog persuades you to have a look at the article, its purpose will have been served.