This year's United States Conference on HIV/AIDS (USCHA) marked a historic moment in movement building among people living with HIV: A group of lifetime survivors of HIV (people who acquired HIV at birth or in early childhood) came together to organize what was likely the largest gathering of our community that has taken place since we attended camps together as children.
As a longtime activist and woman living with HIV since birth, I was among them. It was one of the best things to ever happen in my life, falling only below the day my son's adoption was finalized and my wedding day. Yes, it was that high up there in level of impact, significance, and joy.
According to the Centers for Disease Control and Prevention, there are approximately 12,628 people living with perinatally acquired HIV in the U.S. and six dependent areas, including Puerto Rico. In comparison to the approximately 1.2 million people across the U.S. who are living with HIV as a whole, 12,628 might not seem like a lot or a reason for alarm. However, therein lies the problem. Thanks to treatment as prevention and success in reducing perinatal and blood transfusion transmissions, the number of new people acquiring HIV at birth or early childhood was "virtually eliminated" (I add quotation marks because it is not zero cases).
Once transmissions decreased so dramatically, people stopped paying attention to children with HIV and forgot such young people still existed. Those of us who share this experience were left frozen at a point in HIV history and have been made invisible for the past two decades.
Some children benefited from attending summer camps for kids affected by HIV, where we got to meet others who were also growing up with HIV. However, once we aged out of camp, we were left with no organized spaces to be in community with each other. There is rarely any mention of our population in any kind of research, policy, or programming. Yet, we're still here.
In recent years, long-term HIV survivors have become oriented as a community around the significance of living with this virus for several decades. We are among the longest survivors of HIV, but we have been overlooked. While we receive sympathetic messaging mixed with pity, there has been no action to elevate and address our community's concerns.
By writing this article, I am declaring, "That ends now!"
Taking Action and Announcing Our Name
For USCHA 2023, a group of us organized to get scholarships specifically reserved for lifetime survivors. We hired talented and experienced organizer Venita Ray to facilitate strategy sessions leading up to and during USCHA. In those first sessions, we confirmed that we must organize into a network of lifetime survivors of HIV—the Dandelions Movement. While we only had 12 dedicated scholarships for lifetime survivors, there were about 20 of us in attendance at the conference. Each day, we were able to find more of us to bring into the circle.
It all started with the opening plenary, where about 15 of us took the stage to declare the terms we'd chosen for ourselves to describe our community. We are LIFETIME SURVIVORS, because we are the only people who have lived with HIV our entire lives. And, in honor of late lifetime survivor and writer Mary Bowman's poem of the same name, we announced that we are the DANDELIONS and demanded that people refer to us by these terms from now on.
During our time on the stage, we read a list of demands that included being represented at research, policy, programming, and decision-making tables. We also called for dedicated funding to initiatives directly originated, led, and implemented by us.
Following our announcement, we conducted an on-the-ground strategy session where we summarized the work we'd begun over the summer: identifying needs, priorities, and organizing strategies we intend to employ. We affirmed that we are a diverse and intersectional movement seeking to learn from our elders but not interested in replicating their missteps. We asserted that we want no part in AIDS, Inc., and that no organization will set the agenda for, nor take credit for, the work of those of us with a whole lifetime of lived experience with HIV. We want wide support for our cause, but we will not be used as the latest trend or mascot to focus on. We are here because, up to this point, nobody has made tangible efforts to respond to our needs—despite some organizations stating that they have been longtime supporters.
While Dandelions will be the leaders and creators of our own solutions, reinforcement and support from our allies will be crucial. In other words, we're asking for meaningful assistance, which can include ensuring we are invited to decision-making tables, mentorship and capacity development for our members, and providing or advising us regarding fiscal sponsorships and funding.
After our strategy session, we had dinner at Busboys and Poets—the former stomping grounds and poetry home of our own Mary Bowman. Our energy, connection, and pure joy were nothing less than electric. It was a mixture of the aching longing that each of us has held for nearly four decades and the intoxicating bliss of finally having what we needed. We bonded so intensely that we rolled as a group of 20 back to the conference hotel, stopping and waiting for someone to use the restroom; then lingered in the hotel lobby, sharing and listening to poetry as we continued to get to know one another.
Sadly, we also said goodbye to yet another of our own: Tiffany Marrero-Stringer, the "crop top queen" who inspired so many of us and passed away at the age of 31 in May. Her memorial was a moment of deep sadness over her death—and an opportunity to remember her joy, boldness, and unfiltered passion. There were definitely lessons to learn for our budding Dandelions movement, mainly: to be unapologetic and fierce in our advocacy, to not give a fuck about what anybody thinks, to love intensely, and to find community who will be there with us until the end. I think Tiffany would be proud of what we have accomplished and the work we are about to do.
In 2015, I created the documentary We're Still Here, which followed my search for community.
Many of us have started efforts in our local communities and through social media to connect with each other. In 2023, our call is being answered—and it is being answered by us, for us. We are now finally coming together as a collective to organize a movement that can no longer be ignored or minimized.
The moment in which all this is occurring feels right. We Dandelions needed to get to this point of adulthood—the oldest of us are now reaching their 40s. It was important for us to gain the confidence that comes with age and to feel more secure in our skills and our experiences living with HIV. All this fortifies us to build a movement that is truly led and carried out by us directly—with support from trusted accomplices, and without the influence of outside entities.
This is the beginning of something big. We know that we cannot wait for someone else to come save us. The most important and radical work in the HIV field is and always will be led by grassroots networks of people living with HIV. We, the Dandelions Movement, are here as part of that legacy—and we were born ready to build that future. If you'd like to support our efforts, you can follow us on Instagram @ddls_movement.
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
- Harnessing the Healing Power of Community through Honoring our Experience by Heather O'Connor
- Reclaiming Our Time From HIV Stigma (TheBody) by Bridgette Picou, LVN, ACLPN
- 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