Community Conversations series brings people living with HIV together across distance

Community Conversations is a virtual program of AIDS United’s People Organizing Positively led by and for people living with HIV. Barb Cardell, advocate and a founding member of the US PLHIV Caucus, says the idea for hosting Community Conversations came as the world started experiencing the isolating effects of COVID-19.

“We wanted to really figure out how, since we were living virtually via Zoom, we could really try and foster connections to talk about things that were important,” she said. Although people could not safely gather any more, Cardell was determined to build leaders as a part of the ongoing People Organizing Positively project.

“I realized that people were very, very tired of being on Zoom learning about anything and that we were really hungry for some form of community building or connection over the pandemic,” Cardell said.

Instead of having people sit and listen, Cardell wanted to create a space where people could have conversations like they would while waiting in the lobby for a conference or the hallways before a meeting.

Cardell says before you can teach people, you first must let them know their voices are heard, valued and important.

“We feel predominantly like imposters. The imposter syndrome is very, very real. And so if we say, ‘People living with HIV need to advocate about their lived experience and need to know that their lived experience is important,’ we also need to give people a place to talk where they can share that lived experience.” Cardell says you don’t have to have letters behind your name to be an expert. “You have a Ph.D in HIV.”

The first Community Conversation was about language. Although Cardell intended to talk about person-first language and pronouns, the conversation organically shifted into talking about language justice. Participants were sent off with a major question: How can we make our meetings more accessible for non-English speakers?

The most recent Community Conversation took place on Sept. 17 and focused on quality of life.

“It started off where we’re talking specifically about what brings you quality of life, or what quality life looks like for you. … and it veered off into talking about sex and being sex positive and how do we as we age acknowledge that.”

And that’s the beautiful thing about Community Conversations. Although there is a general theme for panelists and audience members to think about, the conversation can lead to new, important topics for people living with HIV.

Cardell says she has to disconnect and go take a walk after the Community Conversations.

“It makes me really emotional because I feel so grateful for all of the people who show up and what they share,” she said. “What I miss the most is being able to connect with people really authentically. To hear what has been a success, and what has been a challenge, and how they’re doing, and what they’re proud of, and what they’re scared of.”

She looks forward to a time where we can connect meaningfully once again. But she also looks forward to the next Community Conversation on voting engagement and justice.

“Our main goal for that is going to be to really talk about why people don’t vote, why people should vote and how people can vote.” Panelists will likely include someone who felt their vote did not matter, someone who is not yet registered to vote, and a returning citizen who can vote only in some states.

“It is too easy to be disenfranchised, to feel like our voice doesn’t matter and our vote doesn’t matter,” she said.  “That is just allowing patriarchy and white supremacy to tell communities that we need to fight against that. And we do every single day in every way we show up.”

Cardell also hopes to talk about the importance of every election, even down to city council and school board selections. But not in an “electronic” way. She wants to make sure people living with HIV understand their role as subject-matter experts and the power their expertise can have on electing officials who prioritize their needs.

“You have lived and survived and thrived and figured out how to be your best self — and some days, not your best self living with HIV. And that is so important. That is knowledge that other people don’t have.”

AIDS United’s People Organizing Positively initiative, with generous support from Gilead Sciences, taps a new generation of leaders living with HIV to help end the HIV epidemic in the United States. Register now for the next Community Conversation taking place on Oct. 25 at 7 p.m. EDT.