The Ryan White Community Advisory Board (CAB) meets at AIDS Foundation Chicago (AFC) offices every other month, as it has since 2010. Founded so consumers could give ongoing feedback on programs and services for Chicagoans funded through the federal Ryan White program, members are people from diverse backgrounds living with HIV and giving back to the community through their service and advocacy. Several members have gone on to work in the HIV field since joining, and all have formed close bonds.
Hoping to provide opportunities for others to connect and have a safe space to be seen and heard, the CAB is launching a new support group for people living with HIV. They will host an open house on Thursday, December 5 at the AFC offices at 200 W. Monroe in the Loop for the community to learn about the CAB and inform the direction of the support group. Interested participants can register online and must bring photo ID to enter the building.
In a recent CAB meeting, members presented longtime group organizer and AFC staff liaison Angela Jordan with a potted rose plant for her birthday. “Cultivating the Ryan White CAB has been one of the most rewarding aspects of my work,” Angela said. “Seeing the group in action reminds me of why the work we do at AFC is so important.”
CAB members started the meeting with an icebreaker, discussing which artist, living or not, they would most like to see perform (Prince, Whitney Houston, Aretha Franklin, and David Bowie were mentioned, among others – this group has good taste). They shared updates from their personal and professional lives. They laughed together and rooted for one another as they described their successes and challenges.
The Board has been a powerful force for progress in the HIV field since its inception, shaping the critical Ryan White program and how its funded services are implemented in Chicago. “HIV has been living with me on my terms for over 27 years now,” said Bryan, the board chair. “15 years ago, when I joined the CAB, even 20 years ago, you were effectively locked out of the healthcare system at that time. Ryan White came in to fill that gap and keep us alive.”
As the Board members reflected on their years of service, they noted that the availability of resources like support groups has waned since they were diagnosed or entered the HIV field in the 1990s. They collectively decided to change that by hosting a new support group themselves. In addition to engaging people with the support group, the CAB is seeking to recruit new members for the board. Participating in the Board has helped its members to connect and find both personal and professional growth. They are hopeful that younger members of the HIV community will join and benefit from what CAB participation can offer.
Carmen, a member of the CAB for 13 years, works for AFC partner organizations TPAN and Open Door Clinic, and had recently hosted a weekend retreat for over a dozen women living with HIV, to share skills, practice self-care, and connect. Since joining the CAB and starting work in the HIV field, her goal has been to reach other women living with HIV.
It has been a blessing “to have these connections and to be able to build this support, all because I was willing to open up my life,” said Carmen. “I’ve got some day-to-day stuff going on, you know...but my life, it’s good. And it’s good because I’m living. I’m not gonna die from no HIV, that’s like the smallest thing on my plate. Because what you learn from coming here is how to manage, how to open up and talk.”
“When I lost my mother, I got the biggest support from this CAB,” Carmen added.
Louis, the longest-serving current member of the CAB, first started meeting with AFC-affiliated community advisory groups in 2007. "I got into this because originally I was an elementary school teacher for the Chicago Public Schools. And I had to give up my career because of my illness,” Louis recalled. “And I felt like life had given me lemons, so this was my way of making lemonade. Using what brought you down to bring you up again.”
Louis engaged both Bryan and Carmen to get involved with the Board, and all three share the sense that their involvement has changed their lives for the better and given them a sense of purpose and solidarity. Anticipating retirement, Louis said of his work, “I’m happy. I did something really nice with my life.”
CAB member David has participated in the group for one year, and despite being retired from the HIV field he continues to fiercely advocate for his community in board meetings. “CAB gives me an opportunity to talk about what I’m dealing with – and that’s HIV,” said David. He is passionate about the new support group so others can have a space like this in which to be heard. “I believe in trying to get more involved,” he said. “People need each other. Without that support, how are you gonna grow into that next phase? Groups are powerful.”
CAB member Judy has been with the group for a couple of years and attended the meeting virtually. “We miss you,” the other members said to the projector screen where Judy’s face could be seen smiling. Judy has been living with HIV for 31 years, and said she is most proud of learning “how to speak up, especially for my community, the Black community, where there is a lot going on with health care access and a lack of care.” She has seen real change as a result of her efforts with the CAB in just a couple of years. “The system is kind of messed up, but thanks to us, it’s getting better,” she said, adding, “Sometimes all you need is a little smile and somebody to tell you everything will be alright.”
The Ryan White CAB Support Group is open to anyone living with HIV, and registration is available online here. Participants must bring a photo ID to enter the AFC offices, at 200 W. Monroe in the Loop.
