Language and activism have a necessarily fraught relationship: the right words can define successful activism just as the wrong ones can undermine it.
For activism like that in the fight against HIV/AIDS, one unfortunately inextricable from misconception and stigma, language proves especially significant. Put simply, how we talk about HIV/AIDS matters.
In any successful allyship, inclusive and sensitive rhetoric is not just valuable; it’s essential. Appropriate language can prove the difference between effacing or elevating, demonizing or idealizing, creating distance or proximity, cementing identity and positionality or breaking ground for its resolution. Appropriate language can facilitate or inhibit progress; it can dismantle obstacles or construct even more acute ones. If activism is truly about breaking down barriers, then we must use our words as tools in this work.
When we talk about HIV/AIDS, here are a few major guidelines for language whose use – or lack thereof – has particularly significant resonance:
“AIDS” When Referring to HIV: HIV and AIDS are NOT the same thing. HIV stands for Human Immunodeficiency Virus, or the virus that one contracts initially. AIDS, however, is Acquired Immunodeficiency Syndrome, which is marked by a CD4 cell count of less than 200 and a range of conditions associated with serious immune system damage. HIV may or may not devolve into AIDS depending on treatment. To be blunt: one does not “get AIDS”; one “contracts HIV”. An HIV-infected individual may live an entire life without ever reaching the point of “having AIDS”.
Use Instead: “HIV”, “HIV-positive”, “contract HIV”
“Innocent Children”: Though PAC’s work does focus on pediatric HIV/AIDS, specifically mother-to-child transmission, HIV/AIDS impacts all ages, demographics, genders, and socioeconomic classes. Conferring innocence on one group inherently confers culpability on another, and our intention as advocates should not be to make assumptions of relative blame or to further contribute to perceived divisions amongst affected communities. Further, pediatric HIV/AIDS cannot be separated from HIV/AIDS in its other manifestations, and the systems of oppression that result in 400 births of HIV-positive children per day are the same systems of oppression that render queer communities, people of color, and those in sub-Saharan Africa particularly vulnerable.
Use Instead: “HIV-positive children”, “children infected or affected by HIV/AIDS”
“HIV/AIDS Victims”: The term “victim” is disempowering and implies passivity/lack of agency over one’s life. HIV-positive individuals can and do live long, happy lives and do not necessarily identify with victimization or suffering. Further, one’s HIV status does not define one’s identity or existence.
Use Instead: “HIV-positive individuals”, “people living with HIV”
“Bodily Fluids”: HIV is transmitted via certain bodily fluids: blood, semen, pre-cum, vaginal fluids, breastmilk, and anal mucus. HIV is NOT transmitted via saliva, skin-to-skin contact, or fluids other than those listed above. The homogenization of all “bodily fluids” has contributed to stigmatization and marginalization of HIV-positive individuals, such as misconceptions about contracting HIV via kissing, sharing drinks, toilet seats, or hugging – all of which are NOT ways HIV is transmitted.
Use Instead: “fluids of transmission”
“Prostitute”: “Prostitute” is a term with a loaded connotation that does not reflect the reality of sex work as employment rather than necessarily a defining personality trait or lifestyle.
Use Instead: “sex worker”
“High-Risk Groups”: This term has been used in reference to communities such as sex workers, intravenous drug users, and those who have unprotected sex that experience disproportionately high rates of HIV/AIDS. However, referring to an entire group as “high-risk” constitutes its own implicit form of prejudice or bias and equates the individual with behavior they may or may not engage in. It is necessary to recognize those who are disproportionately infected/affected, but one must not do so in a way that effaces individuality.
Use Instead: “high-risk behavior”, “affected communities”
With these guidelines in mind, remember to be respectful and intentional when talking about HIV/AIDS. Inaccurate comments, ignorant jokes, and inappropriate misconceptions pose as much of a challenge to an HIV/AIDS-free generation as the virus itself. We must always strive validate the lived realities of those living with HIV/AIDS as well as remain accountable for our unique positionalities as allies – and this cannot be done without attention to language.
Written by Claire Fieldman