We have had a wealth of excellent articles to read over the last few weeks in the African Democracy – Botswana course. Including this week’s readings, we have looked at how culture, gender, sexuality, race, rural and urban settings, and the social expectation that accompany each of these affect the spread of HIV. One issue that is central to all of these is stigma and discrimination related to HIV. In this post, I would like to add another factor – the voices of people living with HIV and their friends and allies – into the mix that is our conversation about HIV-related stigmas.
First a quick word about terminology and concepts. Stigma refers to a social process by which some people are considered to be less valuable human beings because of some trait or characteristic (sex, race, illness, age, disability…the list goes on). Those without this discrediting trait or characteristic are considered to be more valuable human beings. This second aspect of stigma is usually invisible as those without the disliked trait tend to have more social power and see themselves as normal and deserving of social value.
(For those interested in understanding more, I just looked and there is a pretty nice explanation of Goffman’s work on stigma and how it relates to HIV here.)
You may have noticed that I referred to HIV-related stigmas in the first paragraph. This was intentional. As one student perceptively noted last week (Hadi, was it?), people living with HIV often already belonged to stigmatized groups. Thus they are subject to multiple layers (often conceptualized as intersections) of stigma when dealing with their HIV diagnosis. Around the world, the social vulnerabilities that arise from belonging to a stigmatized group contribute to individuals’ risk of infection and affect their access to prevention education, to strategies to protect their own bodies, and to treatment and care if they test positive. This is true both of large groups such as women or smaller groups such as racial or sexual minorities. As a result, multiple stigmas interact when we discuss HIV-related stigmas.
These multiple stigmas interact for yet another reason. HIV is usually associated in people’s imaginations with membership in disliked groups or with behaviors that are considered deviant by majorities in the general population. This imaginary connection between stigmatized groups and behaviors impacts how people with HIV are perceived and the kinds of care that those who are not infected believe that infected individuals deserve. When crafting interventions to address HIV, the stigmatizing perceptions held locally need to be understood. For example, in the US, HIV stigma may be fueled by homophobia, by racism, by misogyny, or, more likely, by some varying combination of these.
The different stigmas that come together to create what I am referring to as “HIV-related stigmas” are mutually reinforcing.
HIV-related stigma and discrimination (or acts against people who are, or who are perceived to be, HIV-positive) have risen to become a top priority in the global HIV response. World-wide, people addressing the epidemic have been dismayed to find that increasing education, testing, and treatment services – while definitely saving many lives – has not reduced new infections or increased uptake of services in the way that many hoped. In 2009, the NGO delegation to the UNAIDS board asked civil society organizations around the world what they saw as the biggest barriers to scaling up HIV prevention and treatment services (report here). These organizations pointed to stigma and discrimination as the biggest barrier. More than 70% reported the existence of stigma and discrimination in HIV prevention services, while more the 60% reported stigma and discrimination in HIV treatment services.
Based on this and other studies, over the last few years, there has been a growing consensus that further headway will be difficult unless we address stigma head on.
Some groups of people living with HIV have done just that – using their own bodies and voices to humanize images of HIV+ people in public perceptions. I want to highlight three: the first from South Africa and the next two from the US.
Continue reading here…