When biographical disruption meets HIV exceptionalism: Reshaping illness identities in the shadow of criminalization

Abstract

Drawing on interviews with civil society actors in the AIDS Service Organization (ASO) sector in Canada, this article explores how these actors contribute to shaping the illness identities of people living with HIV/AIDS in the shadow of efforts to criminalize exposure to HIV. While the biographically disruptive qualities associated with an HIV diagnosis have been addressed in the medical sociology literature, we turn our attention to the key role played by ASOs as interlocutors in this process. Paying specific attention to the intersection of processes of medicalization and criminalization, we ask how they are re‐stigmatizing a condition that has shifted in the public consciousness from its earlier association with deviance and moral culpability. One important implication of our findings concerns the need to take greater account of how the illness identity and experience can be shaped by a ‘biography of telling’, of a renewed pressure to disclose intimate details of one's health status as a way to perform responsible practices of citizenship.

I am what I am?—An integrative review of understandings of ‘health identity’ and ‘illness identity’ in scientific literature

“…Some of the articles that apply a being approach elaborate openly on the judging aspect (Corrigan et al., 2016; Orsini & Kilty, 2021), while others indicate an understanding that being may determine acting (e.g. Allman et al., 2018; Corrigan et al., 2016; Helgeson & Zajdel, 2017; Korsbek, 2013; Palmer‐Wackerly et al., 2018; Spencer & Almack, 2022).…”

“…Such attributes may belong to the (diseased) body, the mind or a group membership and are deemed not normal in relation to a normative standard. A stigma thus represents an ‘undesired differentness’ of a person (Goffman, 1963, p. 15, cited in Monaghan & Gabe, 2019) that has negative connotations and ‘serves to lubricate the moral passage from sickness to badness’ (Hoppe, 2014, in Orsini & Kilty, 2021, p. 5) 10 . Being, or risking to be, stigmatised means being assigned a (potentially) spoiled identity as undesired or undesirable, depending on whether one’s public stigma is realised (perceived/enacted stigma) or potential (anticipated stigma).…”

“…Discipline affiliation was assigned following the scope of the journal in which an article is published.7 It is noteworthy that although a considerable portion of articles in this theme mention, relate to or can be connected to stigma, they usually do not rely on stigma as a central means of judgment (with the exception of Wilhelm-Solomon, 2013).8 According toBury (1982), biographical disruption affects taken-for-granted behaviours, assumptions and explanatory frameworks and may mobilise resources for adjustment (see e.g. DiRisio et al, 2011;Heavey, 2018;Korsbek, 2013;Orsini & Kilty, 2021;Shostak & Fox, 2012;Spencer & Almack, 2022).9 A similar understanding of illness identity appears to be represented by the Illness Self-Concept Scale (as referred to in O'Donnell & Habenicht, 2022), the Recovery Style Questionnaire and the Illness Cognition Scale I AM WHAT I AM?…”

Impact of Canadian human immunodeficiency virus non-disclosure case law on experiences of violence from sexual partners among women living with human immunodeficiency virus in Canada: Implications for sexual rights

“…74 HIV-related stigma has been previously identified as a barrier to HIV status disclosure, 75 and to accessing and adhering to ART necessary to maintain an undetectable viral load. 76 HIV criminalization and HIV-related stigma are inextricably linked, 27 and the overly broad application of the law against people living with HIV acts to re-stigmatize the HIV-positive identity, 77 reviving outdated stereotypes that portray people living with HIV as ‘reckless vectors’. 78 Structural approaches to HIV-related stigma call attention to the ways that stigma is embedded and (re)produced in social, legal and institutional systems, policies and practices to keep people ‘in’, ‘down’ or ‘away’.…”

HIV Diagnosis as Both Biographical Disruption and Biographical Reinforcement: Experiences of HIV Diagnoses Among Recently Diagnosed People Living With HIV

“…Drawing on Michael Bury's (1982) conceptualisation of 'biographical disruption', previous research has characterised HIV diagnosis as a moment in which one's anticipated or imagined life trajectory is disrupted (Alexias et al, 2016;Campbell, 2021;Orsini & Kilty, 2021). For Bury (1982), the diagnosis of a chronic illness is an experience in which individuals not only confront a new medical and health reality, but also undergo a shift in perceptions of self and identity.…”