Bold, resilient, elegant, resourceful, triumphant, and vibrant are all words I think of when I imagine the lotus flower. To the world the lotus flower symbolizes a number of characteristics, like strength and endurance. However, we rarely focus on the swampy environment it emerges from—hot, muddy, muted, crowded, and grimy—or the many factors that should work against its growth, yet surprisingly encourage it. In spite of the difficult environment, the lotus flourishes.
My experience attending USCA (United States Conference on AIDS) was one of the most educational experiences I’ve had in a while, but not in the way I had expected before my arrival. Similar to the lotus’s swamp, I found navigating the conference confusing and difficult; yet I emerged from the experience both with better skills and a supportive, family-like network.
Unwarranted environments have been the cause of all major movements. It is during times of dysfunction and dis-organization when people find themselves having to be more organized and functional than ever before.
I didn’t clearly understand that notion until I reflected upon this year’s USCA. The theme was “Family Reunion,” but surprisingly enough, a lot of queer people did not feel a part of the conference “family.” For example, a trans man interrupted the Gilead plenary because he wasn’t included in the statistics shown in the presentation. He also stated that he saw no imagery that represented him at the entire conference.
There was a woman who felt that the conference registration fee alone was too high for someone living with HIV to afford, then to add hotel and travel would be too much. She felt that the conference was designed only for a group of people that she wasn’t a part of. However that may be, the underlying complaint about the conference being unorganized, and important populations being underrepresented, encouraged people to speak out and unify. This USCA created union.
Before we can talk about health care access, stigma, PrEP (pre-exposure prophylaxis), and ending the HIV/AIDS pandemic, we must first have support, a family. As I reflected upon all the sessions I attended and one-on-one interviews I conducted, I noticed that even amid the disagreement, each group of people—Black women, Latino gay men, trans men, trans women—all bonded.
I hate to admit it, but it seems as if the most passion and best work emerge from disagreement. There would be no USCA if someone had not gotten fed up with the environment that people infected and affected by HIV/AIDS experience. Despite being underrepresented, these groups of people rose to the occasion and shone and let their voices be heard. It was so beautiful to see USCA support, foster, and respect their plight. Surprisingly, the seemingly biased and weighted environment may have created a positive movement that I think everyone leaving USCA feels. No matter the demographic, there’s a sense that everyone knows there’s work to be done, and now is the time to do it.
Working as a social media fellow through NMAC this week has opened my eyes to see what I wasn’t seeing before because of the uncomfortable, unfamiliar environment we were subjected to. Initially I was extremely critical of the Social Media Fellowship program because of seemingly missed opportunities and lack of support. Think: no reliable place where we could recharge the very devices we were relying upon to report on the conference. But that exact environment created a group of 11 close friends in a matter of days. I was forced to depend on my intergenerational peers for help, assistance, and knowledge. We exchanged wisdom with one another, based on our cultural and professional backgrounds, in ways that I had never experienced with a group of people before.
Even more importantly, we bonded beyond the work of HIV/AIDS. We became a family, and that would not have occurred in a more structured and organized fellowship. I honestly wouldn’t trade the experience for the world. That type of peer support and unspoken bond is needed to end the HIV/AIDS pandemic. Sharing unconditional love, support, and balance will provide me with the fuel to fight for health care, advocate for PrEP, and combat stigma—and that’s all because I know my family has my back.
So despite our challenging environment, we embodied boldness, resilience, elegance, the sprit to be triumphant, and vibrancy, just as the lotus would in spite of the swamp. In spite of the HIV/AIDS pandemic, everyone in this fight can rise. In spite of not being represented in the world, we can join together to form a union that will be as loud as loud can be. In spite of an unorganized situation, we built family and guidance and fostered togetherness. In spite of not having the structure for success, we made it work for us.
Jourdan Barnes works as a community-engagement specialist with the Louisiana Office of Public Health and STD/HIV Program.