As a nurse, I've been advocating for people living with HIV my entire career, which is slightly different from being out and loud about your HIV-positive status. In the two years that I've been an "out" advocate, I've realized that visibility brings a level of responsibility that one rarely experiences when they are living quietly with the virus―including the consequence of being held responsible for things one may have once taken for granted. Though it can be exhausting, I willingly carry the burden of increased scrutiny because I'm trying to be the person that I needed when I was diagnosed.
I'm not trying to know it all or be a hero, but I want to make a difference. That said, one thing I know to be true about the Black folks in my life is: We are going to create heroes in our communities. With all the external forces of oppression―from civil injustice to systems of racism and classism―we need our heroes to remind us that there are ways to get up and get out. And that there are folks who fight for us when we can't fight for ourselves.
But what are we supposed to do when those heroes let us down?
Lordy, when they let us down, it's such a disappointment. That's why I constantly remind myself that heroes are people too and that we need to allow them some grace―which can be hard to do from a space of disappointment. The disappointment I recently felt was all too real, especially because it happened in what I usually consider a safe space―the United States Conference on HIV/AIDS (USCHA).
While attending the conference, I learned that Rep. Maxine Waters (D-CA) would be speaking at the opening plenary on Sept. 6. I have admired Waters since I was in high school, growing up in the district that she represented. Long before going viral for her now-famous "reclaiming my time" moment, she was well known for speaking truth to power, which has made her incredibly popular in the Black community and a longstanding shero to women of all backgrounds.
When I was diagnosed with HIV and researching any help I could get, it was gratifying to read about the support she has given to the HIV/AIDS fight. That's one reason why I was looking forward to her keynote speech at USCHA.
Minutes before she took the stage, I sat back in my seat and prepared to applaud her for what I was sure would be her usual fiery speech in support of people living with HIV and of women in particular. Instead, I was peppered with stigmatizing language and sat stunned trying to find grace and patience as Congresswoman Waters used terms the HIV community has been pushing to remove from use in research, medical care, treatment, and prevention.
Approximately three minutes and 30 seconds into her 45-minute-long speech, while setting the scene of what it was like to live in the '80s, Waters said, "I think about those pastors who are condemning those who had been infected and thinking, 'Now who in the hell is going to direct that choir when they're no longer here? Because that's who's keeping this church together.'"
Some people laughed at the obvious reference to gay men leading church choirs. But many of us started to ask each other aloud, "Who wrote this speech?" Privately, I asked myself, "Why did no one correct the language ["infected"] or tell her that there were better words?"
At one point, while speaking about moments that she considered worthy of applause, she stated, "They deserve the support. And so many of them really did develop, and really understand their own talents, and go out and get jobs even though they were infected."
Though Waters immediately followed up by saying that this same group of longtime survivors "had HIV," got on medications, got to work, and are still living, the repeated use of "infected" betrayed something.
That betrayal had already been confirmed 20 minutes into her speech, when she used the term "full-blown AIDS" while speaking about the Centers for Disease Control and Prevention's decision to only count people who had developed AIDS "and not cases of HIV infection."
"Full-blown AIDS" is never an acceptable term. In and of itself, it creates a false narrative of what life with HIV is and can be. HIV is already misunderstood and consistently misrepresented by people who are seronegative. And it's critical for allies to use their platforms to support our community―not to alienate us further.
What was equally terrible was that a minute later, rather than lifting up the contributions of women in the HIV fight, she talked about Magic Johnson as an example of success in HIV advocacy and proof that "you don't have to die with full-blown AIDS."
"What?" I thought. "Again with that term?" And while Magic is well known, he alone does not represent the faces of HIV/AIDS. His privilege and proximity to power gave him a path to health many of us have not been afforded. And his fame must never overshadow the ongoing struggle and contributions of advocates and other people living with HIV.
In many ways, it was the kind of powerful speech we expect from Waters and garnered much applause. But among my peers, the undercurrent of disappointment was palpable. It most definitely was not the speech I anticipated hearing, and on more than one occasion I thought to myself, "I want to reclaim MY time!"
The responsibility for this failure lies with many people: the speech writers, the conference organizers―who should have vetted the speech beforehand and mandated that Waters remove the term "infected" as well as "full-blown AIDS" and who could have given context and content to support her allyship―Waters' advisors, and Aunty Maxine herself.
Heroes are human, but they must shoulder the consequences of their actions.
As I write this now, the question I have is, "How much grace can I give to people who should know better?" And why does it always fall on people living with HIV to ask people who are seronegative to stop using offensive language?
One of the most complicated aspects of living with HIV is the use of language. Language is one of the easiest tools to lift someone up―or to tear them down. It's how we describe life and ourselves, but it's also tied to identity and self-worth. And it's long been used to pathologize people living with HIV. Unlike other chronic illnesses, shame and guilt are inherent in an HIV diagnosis. In the '80s and '90s, AIDS was a deadly condition, and a diagnosis gave society leeway to judge the actions and behaviors of people who were already fighting a near-death sentence.
By focusing on the condition, people start to equate us with its worst outcomes and deprive us of our humanity. We strive to correct the narrative of stigma and focus on the person when we name ourselves "people living with HIV/AIDS." And while they may not bother some, terms like "infected" and "full-blown AIDS" conjure images of death while centering shame, guilt, and wrongdoing.
That the use of stigmatizing language happened in a space where there were people in all stages of living with HIV and finding a new pathway forward―from newly diagnosed to discovering their stride and championing others―was incredibly irresponsible. Especially since it was seemingly done without considering how the words might affect the people in the room.
Following the conference, I started to look online for an acknowledgment or even an apology for the effects of that speech. As of yet, it seems that neither Waters nor the conference organizers were aware of the harm they caused with her speech. At this point, I have started to ask myself, "Would an apology make it better?" Likely not. Would it allow me to extend some grace? I'd like to think so.
Until then, the better question is what will USCHA's leadership do to ensure that anyone they invite to speak chooses language that elevates and honors people living with HIV, rather than reducing us to one aspect of health?
More from The Well Project on the 2023 United States Conference on HIV/AIDS (USCHA 2023)
- Learning About HIV Cure Research from Long-Term Survivors by Marissa Gonzalez
- Lifetime Survivors Are Still Here ... and We're Organizing! (TheBody) by Grissel Granados
- Harnessing the Healing Power of Community through Honoring our Experience by Heather O'Connor
- I'm a Lifetime Survivor — Put Some Respect on My Name by Kimberly Canady-Griffith on A Girl Like Me
- No One Told Me USCHA Was the Equivalent to the Grammys! by Justine Davenport on A Girl Like Me
- USCHA 2023: "We Are All HIV Possible" by Marissa Gonzalez on A Girl Like Me
- SPEAK UP by Marcya Gullatte on A Girl Like Me
- My First USCHA Experience by HIVictorious on A Girl Like Me
- USCHA 2023: My Girls by Heather O'Connor on A Girl Like Me