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.