Health-related stigma, a concept deeply rooted in notions of shame and deviations from societal norms, has a long historical ancestry. From ancient times, the mark of an outcast was often literal, with the Greek word “stigma” originally referring to a prick or tattoo used to brand slaves. Today, the term connotes an often invisible mark of disapproval that allows “insiders” to identify and distance themselves from “outsiders,” affirming the solidarity of the non-stigmatized.
For modern sociology, Erving Goffman’s seminal work, Stigma: The Management of Spoiled Identity, provided a benchmark understanding of the concept. Goffman characterized stigma as an attribute that is “deeply discrediting,” emphasizing its relational nature rather than its inherent quality. His symbolic interactionist/dramaturgical approach focused on how individuals manage a “spoiled identity” through impression management in social interactions, highlighting concepts like “maintenance of face” in “front regions” and relaxation in “back regions”.
However, the “personal tragedy” or “deviance” paradigm, heavily influenced by Goffman and dominant in medical sociology from the 1970s, has been critiqued for its sociological limitations, particularly its neglect of macro-level social structures such as class, command, gender, and ethnicity. This paradigm typically explored chronic illness as a “biographical disruption” requiring individual adaptation. Studies on epilepsy and HIV/AIDS exemplify this approach, detailing concepts like “enacted stigma” (overt discrimination) and “felt stigma” (an internalized sense of shame and fear of encountering enacted stigma). For instance, individuals with epilepsy might adopt strategies like “passing” or “covering” to avoid enacted stigma, leading to felt stigma being more disruptive to their lives. Similarly, the “HIV stigma trajectory” outlines phases from “at risk” to “manifest,” with decisions on disclosure and the impact of felt stigma being central.
A significant challenge to this individualistic perspective came from disability theorists and the advocacy of a “rival oppression paradigm” starting in the 1980s. This paradigm posits that disability is primarily a result of social oppression and restrictions imposed on people with impairments, rather than the impairment itself. It introduces “disablism” as a form of exclusionary practice, akin to sexism or racism. This perspective emphasizes the role of power in stigmatization, arguing that stigma is entirely dependent on social, economic, and political power wielded by those who can label, stereotype, separate, and discriminate against others. Young’s (1990) “five faces of oppression”—exploitation, marginalisation, powerlessness, cultural imperialism, and violence—provide a conceptual framework for understanding how disablism manifests structurally.
Moving beyond the paradigm clash, contemporary sociology seeks a more comprehensive understanding of health-related stigma. This involves a post-Goffman, post-individualist analysis that positions stigma relations within a nexus of social structures. A key conceptual refinement proposed is an analytic distinction between stigma, denoting an “ontological deficit” and shame, and deviance, referring to a “moral deficit” and blame. Furthermore, “project stigma” and “project deviance” are introduced to capture instances of conscious resistance and defiance against such attributions. This framework underscores that stigmatization is rarely the sole source of disadvantage, often intertwined with exploitation and oppression. Consequently, effective stigma reduction programs require a reflexive, context-aware approach that addresses underlying social structures and power dynamics, moving beyond mere individual empowerment. Discussions also extend to controversial areas, such as whether mobilizing stigma (e.g., around smoking) could sometimes serve public health goals.
Reference for this article:
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
