The Lion at the Gate: An HIV-Affected Caregiver Resists Stigma

This qualitative report focuses on an older HIV-affected caregivers experience with stigma. I used a hybrid of Gee s (1985, 1986, 1991) and Mishler's (1986a) narrative techniques to examine a portion of an interview in which she recounts two incidents where she felt, reacted to, and resisted associative HIV-related stigma. Narrative methods are instructive in revealing the impact of HIV caregiving through individual accounts, so that deeper levels of understanding can be reached. After framing the work within stigma theory and narrative methods, I position the interviewer and interviewee, present the transcription in detail, speculate on meanings that narrator and audience may bring, link this text to narrative and stigma theories, and offer implications for social work. STIGMA: LITERATURE REVIEW HIV-related stigma--a particularly venomous form of discrimination and oppression (Herek & Glunt, 1988)--frequently silences and disenfranchises HIV-infected individuals (Laryea & Gien, 1993) and their caregivers (Lesar, Gerber, & Semmel, 1995). Herek and Glunt termed this phenomenon "AIDS-related stigma" in 1988; however, because this phenomenon occurs across the spectrum of HIV disease and does not apply only to receiving an AIDS diagnosis, I call it "HIV-related stigma" or "HIV stigma" throughout this article. Public education, organized activism, and the passage of two decades have clearly lessened threats that HIV stigma posed earlier in the pandemic. However, HIV stigma continues to have a serious impact on people with HIV and their caregivers (Herek et al., 1998). Discussions of HIV-related stigma must start with Goffman (1959, 1963), who originally defined stigma as spoiled identity, undesired "differentness," discrediting, and blaming by others. Stigma describes the shared meanings or schemas through which a person's inferiority or danger to others is explained. Stigma labels a person unusual, bad, or morally suspect. People cope with discomfort and hostility by minimizing social contact with those who are marked, which further isolates the stigmatized person. Associative stigma--called "courtesy stigma" by Goffman (1963)--is ascribed to and experienced by people who are associated with a person who has the stigmatizing condition. HIV-affected caregivers can suffer from associative HIV stigma, which can leave them isolated, hidden, fearful, and stressed (Lesar et al., 1995; Mellins & Ehrhardt, 1994). The stigmatized individual or associate is uncertain about how others identify, receive, and treat him or her and may react with secrecy and defensiveness (Goffman, 1963). Because humans define themselves and understand the world through interaction, the fear of being negatively labeled is a significant deterrent to exposing one's stigma and a salient reason for striving to "pass" as normal. "Stigma management" refers to purposeful strategies used by a stigmatized person or associate to lessen ostracism and blame by concealing the condition (Goffman, 1963). When the condition is hidden or not obvious, as in the case of HIV, then fear of discovery or disclosure may become even more pronounced. Lessening the effects of stigma can go beyond the management strategies discussed by Goffman. A stigmatized person or someone with associative stigma may reject or actively resist the pejorative labeling. Riessman (2000) documented stigma resistance in a study of childless women in India and defined resistance as purposeful acts of fighting negative stereotypes. A study in the southern United States found that African American mothers of adult children with HIV resisted HIV stigma by refusing to accept terms and images that invalidated their family's experiences or marginalized them (Boyle, Hodnicki, & Ferrell, 1999). METHOD OF THE STUDY The interview excerpt explored here comes from a much longer text: two taped and transcribed interviews with a white 69-year-old divorced social worker in Massachusetts. …