Women living with HIV perceive many forms of stigma in addition to HIV-related stigma, according to a qualitative study published in the July edition of Social Science & Medicine. Stigma related to living with HIV intersected with stigma associated with gender, race, poverty, incarceration and obesity, according to the interviewees.
“Our findings highlight the complexity of social processes of marginalization, which profoundly shape life experiences, opportunities, and healthcare access and uptake among women living with HIV,” say Whitney Rice and colleagues.
They conducted semi-structured interviews with 76 women living with HIV in Birmingham, Alabama; Jackson, Mississippi; Atlanta, Georgia; and San Francisco, California. The interviewees were invited to describe their experiences of stigma and discrimination, whether in relation to their HIV status or another aspect of their identity.
The majority of interviewees were black (61%), heterosexual (83%), had children (68%) and had a monthly income of less than $1000 (57%).
Most participants were conscious of men having greater power than women. Women said they were undervalued in educational and employment contexts due to their gender. In interpersonal relationships, men would frequently disregard women’s needs and preferences, while parents would typically favour sons over daughters.
Women were also conscious of being subject to different expectations concerning sexual behaviour than men. Stigmas related to gender and HIV intersect, as this interviewee explained:
“It's not so bad for [men] to have many sex partners but it's horrible for a woman to have that many… And she's a whore and all the other words… But it's OK for him. That existed before HIV and it's still in play now… Some dirty woman gave him [HIV] … and they're the bad person —and then the women … you got it because you was sleeping around.”
Stigma related to poverty was also described. Women with limited financial resources felt that they were looked down upon in the community and in personal interactions. They perceived negative treatment when dealing with housing, food and welfare programmes. Moreover, they felt they received healthcare of a poorer quality:
“A person that has insurance [is] going to be at the front of the emergency room and a person that doesn't have insurance, they will be there for five to six hours at a time… I feel as though [the rich] do have a better chance at everything. I feel like if they had a cure, [rich people] would be the first [to get the cure].”
“The rich women … you wouldn't know they were sick and the poor women … you know because … [poor women] have to go to the public clinic … and you would see them. The rich women…they go to Dr. Whoeverman in his private office. There is sight discrimination only because rich women have more privacy in their medical care.”
Black, Latina and mixed-race participants also described racial discrimination. Some felt that people in the community expected black women to be promiscuous and HIV positive.
“[People] just kind of look at black women as being stupid and reckless and poor, just sleep around… All these negative things… it affects me personally.”
Interviewees who had spent time in jail or prison felt that they were stigmatised because of this.
“People look at you crazy. People [think that] if you have been to jail, you are a bad person. You must be some kind of criminal, done something wrong. You know just god awful.”
Women who were overweight often felt that they had been discriminated in relation to employment and were judged for circumstances that are not entirely in their control.
“I'm a big girl. I think and I don't want to say it's discrimination, but I know people look at me and felt some of the she doesn't take care of herself that sort of thing. Because of my obesity, absolutely. I felt that in job interviews and people looking at me that sort of thing. You can see it and feel it sometimes.”
Many of the interviewees were familiar with the idea of being marginalised in multiple ways. Disentangling which aspect of their identity was being stigmatised could sometimes be challenging.
“All my life I've always wondered what people discriminated against me for. Is it because I was black? Is it because I was biracial? I never knew if people were discriminating against me because I was HIV positive, because I was a woman. Honestly, I don't know what. I can't like really pinpoint. I just know that something. I guess it is like a gut feeling. Something just didn't feel right. Like somebody insulted me and like later I'm like what was that for?”
Whitney Rice analysed her data with a framework of intersectionality – in other words, paying attention to the multiple and intersecting forms of disadvantage that individuals experience.
“Understanding the lived realities of marginalized groups requires taking into account the compound nature of their experiences,” she says. “Central to intersectionality paradigms are attention to social, economic, political, and other hierarchies that create and maintain inequalities among people with interlocking social statuses.”
Interventions to reduce stigma should address intersecting, interdependent identities, rather than focusing exclusively on HIV-related stigma, she suggests.
Rice WS et al. Perceptions of intersectional stigma among diverse women living with HIV in the United States. Social Science & Medicine 208: 9-17, 2018. (Abstract.)