Pride Action Tank and AIDS Foundation Chicago (AFC) hosted a summit on eliminating HIV stigma, Shifting the Narrative: Empowering Voices, Inspiring Hope and Transforming Lives on July 21at Loyola University’s Kasbeer Hall at its Water Tower Campus.
An intergenerational panel discussion was moderated by Pride Action Tank Executive Director and AFC Special Projects Innovation Vice President Kim Hunt.
“The HIV/AIDS epidemic has and continues to impact the lives, fears and triumphs of multiple generations,” Hunt said. Long-term survivors, she added, carry a history that no one can forget and that younger generations bring a “fresh lens, new energy and a focus on intersectionality” that challenges prejudices and has “shifted the narrative away from fear.”
Stigma remains, however. Public Health Institute of Metropolitan Chicago Public Health Practice Program Director Bryan Gooding noted that HIV is still often associated with sex, drugs and behavior changes. He further discussed his internalized shame when he was first diagnosed over 30 years ago, despite the fact that his family had always been supportive. He added that the stigma around HIV still persists but was dissipating until this current administration which has undermined that progress.
Southside HIV and AIDS Resource Providers Chairperson Jahari “The Hippie” Stamps, who isn’t someone living with HIV, said the stigma comes from “fear of things we don’t understand.” He also spoke about the importance of creative expression to dispel stigma, which he does in the Ballroom community and through his band SONIC Healing of which he is the lead singer and songwriter.
Positively Aware: The HIV Treatment Journal of TPAN Editor-in-Chief Rick Guasco said HIV stigma is “grounded in ignorance” whether it’s willful or not. He added that some people think HIV is over. He faced stigma when he was first diagnosed decades ago, partially because he had spots all over his face and body in the early years which have gone away. Guasco also called out the Trump administration for the funding cuts that are affecting those living with HIV.
An HIV Stigma Talks and Panel Discussion, inspired by the spirit of TED Talks, also featured storytellers living with HIV.
The Reunion Project Executive Director and Co-Founder Jeff Berry’s story focused on “The Look,” while Howard Brown Health Community Relations Associate Director Terra A. Campbell spoke about how people living with HIV are perceived to be “Dirty.”
National Coalition of Blacks for Reparations in America Chicago member Coleman Goode reflected on “The Chain Reaction of the Margins: Why We Can’t Get to Zero Without Ending Stigma” and Comprensión y Apoyo a Latinos en Oposición at Retrovirus Linkage and Referrals Lead Navigator Milani Valera shared “The Untouchables,” referring to a term by which many people used for her in the past.
Jackson said innovative medical treatments have changed the reality of people living with HIV over the past four decades in numerous positive ways, however “the social burden of stigma remains. It stops people from getting tested, seeking care and living openly.” He added that discussions around stigma “replace judgement with understanding and fear with facts.”
The day-long event also featured a keynote address by Chicago Black Gay Men’s Caucus Executive Director Keith R. Green.
AFC debuted a new HIV Stigma Survey at the close of this event. It is open to any Illinois resident living with HIV ages 12 and up. People who complete the survey have the option to enter a raffle to win one of two $100 electronic gift cards. The survey will be open until Wednesday, Sept. 30. Contact Jackson at tjackson@aidschicago.org with questions.