This paper, titled “Health-related stigma” and authored by Graham Scambler, was published in Sociology of Health & Illness Vol. 31 No. 3 in 2009. It serves as a review article that aims to provide conceptual and theoretical insights for developing a more compelling contemporary sociology of health-related stigma. The author states that the paper’s focus is to represent existing work and suggest conceptual and theoretical ways forward, rather than providing a comprehensive review of all literature.
The article traces the concept of stigma, which has historically been linked to deviations from what is considered “normal”. It begins by acknowledging and critically assessing Goffman’s influential “dramaturgical sensitisation” of stigma from his work Stigma: the Management of Spoiled Identity, which shaped medical sociology from the 1970s. While Goffman’s contribution is recognized for its insight and subtlety, the paper argues that it is time to move “beyond” his approach, as there were questions he did not address. Goffman viewed stigma as “an attribute that is deeply discrediting” but emphasized its relational nature, stating that an attribute is not inherently creditable or discreditable. His work focused on the structure of interaction and how individuals manage “spoiled identity”.
The paper then delves into the “personal tragedy” or “deviance” paradigm that dominated medical sociology, influenced by Goffman and broader interactionist perspectives. This paradigm conceptualized chronic illness as a “biographical disruption” and “loss of self,” requiring individuals to adjust to a new “deviant” identity marked by impairment, disability, and social handicap. To illustrate this, the article selectively reviews analyses of stigma focusing principally on:
- Epilepsy: Drawing on studies by Schneider and Conrad (1983) and Scambler and Hopkins (1986), the paper highlights typologies of adaptation (e.g., pragmatic, secret, quasi-liberated) and the “hidden distress model”. This model distinguishes between “enacted stigma” (overt discrimination) and “felt stigma” (a sense of shame and fear of enacted stigma). Notably, felt stigma is often more disruptive than enacted stigma for those with epilepsy. The concept of “courtesy stigma” is also mentioned, affecting those associated with stigmatized individuals.
- HIV/AIDS: The paper discusses Alonzo and Reynolds’ (1995) “HIV stigma trajectory” with its four phases (at risk, diagnosis, latent, manifest). It also introduces Steward et al.’s (2008) distinction between “felt normative stigma” (subjective awareness leading to avoidance action) and “internalized stigma” (self-stigma, where individuals accept the discredited status). The influence of “vicarious stigma” (learned stories) is also noted.
The article also briefly considers attempts to “measure” health-related stigma, acknowledging the controversial nature of operationalizing such a complex phenomenon. Van Brakel’s (2006) five approaches to measurement are presented, which include surveys of attitudes, audits of discriminatory practices, and interviews about actual, perceived, or internalized stigma. However, the paper expresses skepticism about the possibility of a cross-cultural or “transfigurational” theory of health-related stigma, cautioning against conflating the measurement of consequences with a generic theory.
A significant development highlighted is the emergence of the “oppression paradigm” in the 1980s and 1990s, particularly within disability theory/politics. This rival perspective shifted the focus from the “labelled” to the “labellers,” asserting that disability stems from the social oppression of impaired individuals. The “social model of disability” is central to this paradigm, arguing that disability is a consequence of societal restrictions rather than impairment itself. The article outlines Young’s (1990) “five faces of oppression”: exploitation, marginalization, powerlessness, cultural imperialism, and violence, as a conceptual framework for understanding estrangement.
The paper argues that a post-Goffman sociology of health-related stigma must integrate micro-analyses with macro-analyses of social structures, such as class, command, gender, and ethnicity. It emphasizes that power is central to stigmatization, as those who stigmatize must possess sufficient power to label, stereotype, separate, and control access to core institutions. This perspective asserts that stigma relations are intertwined with social order, often serving the interests of dominant groups.
A key contribution of the paper is the proposal of an analytic distinction between stigma and deviance:
- Stigma is defined as an ontological deficit, reflecting infringements against norms of shame.
- Deviance refers to a moral deficit, reflecting infringements against norms of blame.
This framework extends the concepts to include “enacted” and “felt deviance,” and introduces “project stigma” and “project deviance,” which signify the conscious rejection of shame and blame, representing resistance or defiance. The paper illustrates how cultural norms of shame and blame are deeply embedded in and follow the “fault-lines” of social structures, using the example of “welfare-to-work” programmes. This example demonstrates how stigmatization can be transmuted into deviance and infused with exploitation and oppression, showing that stigma is rarely the sole factor in disadvantage.
Finally, the article touches on stigma reduction programmes, critiquing many current interventions as being overly biomedical and individualistic, acting more as “damage limitation” than genuine empowerment. It calls for a more reflexive approach that considers context and social structure. The paper also introduces the concept of “co-stigmas,” where other factors (e.g., drug use, sex work) may elicit stronger negative responses than the health condition itself. It concludes by raising the provocative question of whether stigmatization always poses a threat to public health, suggesting that in some cases, mobilizing stigma (e.g., against smoking) might reduce risk behaviors, although this is met with strong counterarguments. Overall, the paper advocates for a deeper sociological understanding of health-related stigma and deviance from macro-, meso-, and micro-perspectives, integrating conflict and interactionist sociology.
Reference: Scambler, G. (2009). Health-related stigma. Sociology of Health & Illness, 31(3), 441–455. https://doi.org/10.1111/j.1467-9566.2009.01161.x
