I should preface this by saying we all make mistakes, myself included. Having said that, sometimes mistakes are unforced choices born of being ill-prepared or careless. A careless ally cannot be my ally. Sometimes we decide people are allies to our cause because of shared experience and we don't fully vet their motives and intentions or look past the shared experience into what kind of ally they are.
I was recently in a space with a person speaking publicly about HIV who is associated with the community but is not living with HIV. The encounter left me feeling both disappointed and conflicted. Their connection to the HIV community cannot be denied and let me stress: I am in no way detracting from what they experienced. While I appreciate their personal journey and willingness to speak up, I would rather they champion the cause in silence if they perpetuate stigma, no matter how much influence they have. Relatability and reliability matter more than privilege and performance. Allyship cannot and must not be self-defined, it also must not be assigned to those who engage in careless or performative allyship.
Marginalized groups that face discrimination, fear, bias and stigma need allies. We need people who can move, and make moves, within the structures and systems that would do us harm, and who say our names and champion our causes in rooms we don't have access to. These are the folks who can meet us on both an individual and structural levels. As heavily stigmatized as HIV is, this is especially important.
These same people have to be responsible for how they say our names. They must ensure they understand what HIV is and what it is not. They must be careful not to unintentionally reinforce the cycle of stigma by not understanding how HIV has evolved. This includes knowledge of advances in treatment, but also, and arguably more importantly, the language of HIV. Language evolves, often in response to evidence and insight. There was a time the HIV virus was called GRID and through research and understanding that name evolved AIDS, to what we now know as HIV. Much of what was known then about the virus and its transmission is not only no longer true, they were never correct in the first place. Gay-Related Immune Deficiency (GRID) was not only a misnomer, but core to early discrimination. The conflation of AIDS and HIV continues to cause confusion and fear more than 40 years later.
Fast forward to now and when I hear a supposed ally say "full-blown AIDS," my brain sees a clock on the wall rolling back progress and boosting stigma. There are other ways our allies do us a disservice as well. Few of us refer to ourselves as "victims", and it's disempowering when others call us that. I am personally triggered by applying the term "infected or HIV-infected" to me—I am both a woman living with HIV and a nurse. Nobody "catches AIDS." It's not a damn baseball or football.
These seem like small things, but words are part of identity. Words and labels impact how we see ourselves, and critical to how stigma works and how others see us. For a person who may still be navigating healing with HIV, terms matter. It also matters when we send purported experts and allies into rooms to represent us, and they use words that recall images of fear and ignorance through outdated terms.
I am careful to check myself about my personal triggers in HIV. While not everyone has the same opinion on something, I try to err on the side of "least harm." People living with HIV don't come from one cookie cutter pattern. The ignorance people express about who has HIV and the reasons they have it are astounding. We are not all white gay men. Not every Black person who has an HIV diagnosis is from a rural area or is uneducated. While people may use substances, they certainly aren't "asking for it" by doing so. What remains true in all of those cases is our right to humanity and to be seen as people before our diagnosis.
There are people who would argue that any ally is a good ally. I disagree. Understand, my feelings extend beyond this one incident. This is a call to action or a call to reset to everyone who would be an ally. Someone tried to explain to me that this person's use of language was probably unintentional. While that may be true, when you speak on behalf of a marginalized group of folks, it must be with foresight. It is not our intent we are judged for. After all, I never intended to acquire HIV.
This blog was originally posted on Positively Aware
