Get Rid of the Term “AIDS”?
(How My Entire Life Suddenly Became Parenthetical)
by Paul A. Aguilar
The other day, I was sitting with three very good friends planning an upcoming retreat for long-term survivors of the AIDS pandemic. We’ve been holding these retreats twice a year for the past seven years. Three of us are long-term survivors and one is an ally. Now, “long-term survivor” is subject to interpretation, but, for my purposes here, I will define “long-term” as having lived through and survived the height of pandemic prior to protease inhibitors being made widely available in 1996. This definition allows for not only those living with the virus in their bodies, but also allows for spouses, friends, family members, healthcare providers, et al., who also lived through those years and experienced the same unprecedented loss of life the pandemic brought with it.
I’m a fifth-generation native living in a San Francisco filled with an ever-growing population of millennials who have never personally known someone who has died of AIDS, nor have they seen the devastation and carnage my generation walked through. As I continue this journey of finding my place within the community, now as an Elder (something I never expected to become), I maneuver through meeting rooms and social gatherings filled with young, enthusiastic and energized Twitterati who are ready to challenge the status quo and change the world. Sometimes I feel a little anachronistic and a little out of step. Many, far too many times, I am made painfully aware of just how little historical information about the pandemic these young champions possess. It becomes painfully clear that the basic “edu-gay-tion” of our little “gaybies” is sorely lacking and falls to my generation to rectify that. We are——to these millennials——the very thing that the AIDS pandemic stole from us. We are the older “big brothers” and “silver daddies” that are tasked with handing down our tribal histories and traditions. Sadly, much of that is now AIDS. If there is one positive take away from the pandemic, surely, it’s that it brought our community together in a way that has not been seen since the days of Stonewall. Because of AIDS the LGBTQ community found within itself a strength and determination that was formidable.
One of the many issues we try to address on these semiannual retreats is the stigma surrounding HIV and AIDS and how it impacts our daily lives on a personal level. When someone had mentioned that there are those in the HIV and AIDS community that were beginning to use the term “HIV Stage III” instead of the term “AIDS,” I was flabbergasted. When they went on to explain that there was a school of thought that using the term “AIDS” only added to the stigma surrounding it, I was stunned. Then I got angry. How could they even consider this option? My friends didn’t understand why I became so indignant. They didn’t understand why I was so appalled by this idea. Then, while doing research for an upcoming advocacy and lobbying trip to Washington, D.C., I discovered that many agencies and organizations have already begun submitting reports and research papers using this new terminology. And when I discovered that my very own “gurus” (from my days as an HIV and AIDS development professional)——NMAC——decided to change the name of their annual conference from the “United States Conference on AIDS” to the “United States Conference on HIV”? Well, the betrayal felt complete. If even those who were dedicated to helping those of us living with this disease felt they could no longer use the term “AIDS,” then what hope could there be left for us long-term survivors and thrivers? At least, after an outcry from activists, NMAC changed the name of the conference to include HIV and AIDS. But in general my entire adult life——or more accurately——that which became the framework within which I had to navigate my entire adult life, the thing that was the catalyst for everything I have become… has been relegated to parenthesis. Or worse, never to be uttered again. I’ll explain.
It was a mere two weeks before my high school prom, graduation and eighteenth birthday when Bobbi Campbell posted a copy of the New York Times article about a “gay cancer” showing up in five young gay men in the window of Star Pharmacy on 18th and Castro Streets in San Francisco. It was June 1981. A week after my birthday was the Gay Freedom March (it hadn’t become a parade yet; yes, I’m that old). That August, a mere eight weeks later, the first person I knew personally died in what would eventually become Ward 5B from something that didn’t have a name (they weren’t even calling it GRID yet).
AIDS became my world before I was even old enough to drink legally. It invaded my world before I had even ventured out into the world. While my high school friends were planning their going to college parties, their summer vacations, and deciding what routes they would take to get to whatever university or college they would be spending four years at expanding their minds, I was attending funerals, memorial services and hoping that I hadn’t already caught this deadly disease. AIDS had become an integral part of my life seven years before I would learn that I, myself, had indeed become its victim. By the time I was nineteen, I was attending three and four funerals a week. By the age of twenty, I had become accustomed to seeing a friend one day and having them gone the next. Either they died at home in bed, or left the city to be with family to die, or they died in the newly opened Ward 5B. They all had one thing in common…they were dying.
When I wasn’t raising money for organizations as the office manager of Community Thrift Store or delivering the Bay Area Reporter each Thursday (which became heavier and heavier each week with its ever-growing obituary section), I was volunteering for the AIDS Dance-a-thon or Walk-a-thon or helping out at any number of fundraising events at local bars that helped to raise money for food, or travel expenses or, usually, funeral expenses. During these years I watched as funeral homes wouldn’t bury these friends. I watched as families of my friends shunned them and told some of them it was God’s punishment for their sinful ways. I watched as waiters refused to serve them. I looked on as my friends were fired from their jobs, evicted from their homes and asked——sometimes politely, sometimes not——to not come back to their local market, gym, bar, and so on. I even watched as some friends’ lovers abandoned them for their fear of getting this disease became overwhelming and waiting as their lovers became skeletons was too unbearable for them. I watched as nurses and doctors refused to treat or even comfort friends as they died. There were times when it was hard to distinguish just whose wailing, I was hearing…was it Bob’s, or Steve’s or George’s, or Erik’s or Dallas’s …or was it my own? We had become modern day lepers. Untouchables.
GET RID OF THE TERM “AIDS”?! Well, you may as well just wipe my entire adult life experience from existence. I may as well just pack it all in. Everything I fought so hard for these past thirty years, my sobriety, my education, my resolve that the Universe spared me for a reason would be for naught. All my friends and lovers will have died for NOTHING! Not just mine but also those of the few of us remaining… now considered Elders in our community, who made it through and came out the other side of that horrible war. And war it was, believe me.
The latest statistics show that 66% of those living with HIV in San Francisco are over the age of fifty. Over the age of fifty. Think about it. There are people who are geriatric and living with HIV and, in many cases, AIDS.
But, just like that, folks want to erase the term from general use. Some claim it would help to remove some of the stigma around HIV that is still prevalent, even in the LGBTQ community. Hey, remember when we embraced stigmatizing words? Words like “queer,” and “faerie,” and “pansy”? Remember when we took ownership of them, made them ours? Those very words that were meant to shame and demean and demonize us? What did we do? We turned their meanings into something else, something to be proud of, something to be celebrated! Wasn’t that a part of the gay rights movement in the seventies before the pandemic hit? Aren’t we the same community that took the pink triangle, used by Nazis to demean and separate us during the Holocaust, and turned it into a worldwide symbol of strength and resilience that unites us? Why can’t the same be done for AIDS?
You don’t eradicate stigma by simply not using a term. You don’t eradicate stigma by simply deleting the words used to spread it. You eradicate stigma by educating and informing the greater public. By talking openly about an issue, by showing compassion and empathy when interacting with people affected by whatever the issue is, be it AIDS, HIV, substance use disorders or mental health issues. By showing the rest of the world that those who are being stigmatized are human beings, too.
I’m reminded of what a friend of mine who grew up in South Carolina once said to me about family members with mental health issues which she referred to as “slightly eccentric.” She said, “Paul, honey, in the South we don’t hide our crazy folk away or lock them up in the attic. Hell, we throw a party and set ‘em up on the front porch for everyone to see and enjoy!”
When you start selectively stop using certain terms, when you begin removing them from documents, the next thing you know, they start being removed from history books and before you know it no one’s left alive to remember what truly happened. No one is left to relay first-hand experience. When that happens people begin to question if the catastrophe really happened. Did all those people really die?
Let me ask you this: Would you suggest to someone who is Jewish, that society begin eliminating the use of the term “Holocaust?”
Paul A. Aguilar is a fifth generation native San Franciscan. He grew up in Ashbury Heights during the seventies and eighties. He is a long-term thriver, having tested HIV positive in 1988. “The Test” was awarded runner-up in the 2019 Chris Hewitt Awards by nonfiction judge Joy Gaines-Friedler.