AIDS Foundation Chicago’s (AFC) Pride Action Tank hosted “De-siloing Aging, HIV and LGBTQ+ Services: A Summit on New Possibilities” Oct. 1-2 at Columbia College Student Center.
AFC Care System’s Management Senior Manager, Department of Health and Human Service’s Administration for Community Living HIV and Aging Curriculum and De-siloingSummit Project Manager Melanie Cross and AFC Pride Action Tank Executive Director, AFC Policy and Advocacy Vice President of Special Projects and Innovation and De-siloing Summit Co-Director Kim L. Hunt welcomed attendees and set the table for what they could expect over the course of summit.
Cross thanked Rep. Mike Quigley (D-5) for his work to ensure that appropriation money was set aside within the Department of Health and Human Services specifically so AFC could hold this summit.
AFC President and CEO John Peller said that Quigley earmarked $250,000 for AFC and, “We are using that money to update a training program for case managers so they can better support people living with HIV/AIDS who are aging.”
Hunt said the purpose of the summit was to “recognize the lives and sacrifices of long-term survivors, generations of LGBTQ+ people who lived without the protections we currently have today in the state of Illinois.”
A second purpose, Hunt added, “is to increase the capacity of the service sector to better serve and recognize both the needs and the gifts of older adults who identify as LGBTQ+ and/or are living with HIV and their caregivers.”
Illinois Commission on LGBTQ+ Aging and Longterm HIV Survival Commissioner and Chairperson, Chicago Commission on Human Relations Advisory Council on LGBTQ+ Issues member and LGBTQ+, ableism and aging activist Donald M. Bell said it is important that everyone who is LGBTQ+ across Illinois feels comfortable and supported no matter where they live in the state. Bell spoke about Illinois as a “pioneer” for LGBTQ+ equality, noting that it was the first state to decriminalize homosexuality in 1962 and briefly had the first homophile organization in the United States, the Henry Gerber-founded Society for Human Rights, in 1924.
The event’s keynote speaker—HIV/AIDS activist, author, essayist, blogger and award winner Mark S. King—said he has lived with HIV for almost 40 years. He referred to himself as a 63-year-old gay man who “checks all the silo boxes” for this summit. King added that he is the youngest of six kids and that his parents got two of each; two boys, two girls and two gays which elicited laughter from the audience.
King talked about his first Pride Parade experience in New Orleans’s French Quarter in 1977, shortly after he moved there as a 17-year-old high school graduate and self-described “strawberry blond twink” to attend the University of New Orleans. King also recalled he and his first boyfriend Charlie going on a road trip vacation to Los Angeles and, on a lark, they stood in line to get on The Price is Right where King ended up as a contestant and won a new car.
King showed the video of him on the show, to emphasize that, “We were all young once with lives, dreams and aspirations ahead of us” and for a number of people, something derailed those plans. He added that the video of him on The Price is Right shows “the face of a young man just before” everything changed.
In 1981 he and Charlie moved to West Hollywood. They were in an open relationship and “my dance card was filled, and I was having a great time” as a young and frivolous gay man who “got the clap so many times I called it ‘the applause.’ There was no AIDS. There was no fear [back then].” For King, sex was the only way he knew how to communicate within gay spaces.
He said this was also a moment when the queer community gained some political power, and “a sense of potential and possibility, of maybe we shouldn’t hate ourselves so much … and that we were turning a corner. There was a gay couple on the cover of Time Magazine … All I know is we were so close and expanding that vocabulary until [the AIDS pandemic emerged] … Within a few years of living in West Hollywood, one of the epicenters of the epidemic, it felt like the world was coming to an end,” with so many people he knew dyingof AIDS in those early years.
For King and his friends, fear, deflection and shame enveloped their lives. The message back then was don’t get tested for HIV because of the danger and discrimination that would come from a positive diagnosis, and the fact that there was no treatment or medication to be had. On March 15, 1985, King decided to go against those warnings and get tested, and then his whole world changed with his HIV-positive diagnosis.
“What was that time like,” said King. “I saw the most gorgeous examples of humanity that I will ever see in my entire life,” as people in the LGBTQ+ community helped those who were HIV-positive with the daily chores of life, created support groups and did protests to compel the National Institutes of Health to do something concrete. King said at the same time, members of Congress debated whether those with HIV/AIDS should be shipped off to an island and left to die.
King said that since AZT wasn’t yet available in the United States, he and three of his friends would go to Tijuana to get a trunk full from pharmacies there, with prescriptions friendly doctors would write for them. He added that before they returned to Los Angeles they would visit a gay bar in San Diego to dance and forget about their HIV-positive status.
King, through tears, said the first of his friends to die was Leslie and then Marcos, who woke up blind and then put a bag over his head. Another friend, Ron, who got dementia in the final stages of his illness. King said he is glad he can still feel emotional about this even today.
What surprised and shocked King the most was the fact that the new medications meant that he would live, and that has changed everything about his life. King said he is an example of the elders who currently walk into clinics to get HIV meds and other resources.
“Yes we are wounded, we are haunted but we also saw something spectacular and were able to live to talk about it and feel proud of it,” said King. “Do we put a lot of weight into our identities as survivors, yes and we should.”
King also spoke about facing aging as a person with HIV and told a story about a recent period in his life where he fainted every Saturday night. A doctor’s questions led to his discovering that the catalyst was the Viagra he took to have sex with his husband Michael on those evenings.
“If we ever get to zero,” said King. “I know you are all involved in that. Chicago is a leader in that. If we are going to get to zero, everyone involved must know it is social justice zero. It is about having success fighting all of the inequities. If you don’t address those you are not getting to zero. Life lasts a long time and it is over in a flash … It can be a scary ride. Make the ride a little easier for somebody else. Show some kindness … Tragedy is not a contest. Enjoy these moments we have … Breath. Don’t rush.”
Illinois Partners for Human Service Training and Community Partnerships Senior Director, Reframing Aging National Facilitator and community lawyer Adela Carlin led the Reframing Aging session where she focused on: Why do we need a new story about aging? What can the new story look like? How do we know it works?
Carlin came with her family from Mexico when she was four years old, and a year later she became the family interpreter as they navigated various United States institutions, an experience she said has shaped her entire life. She calls herself “an ally” and when needed, “an accomplice.”
Reframing Aging is, according to Carlin, “a national movement to really change the way that we view and talk about aging … and invites us to start to emphasize the strengths, experiences and contributions of older adults in ways that we have yet to see. To embrace diversity among older adults, and that means all the diversity and all the different nuances that make us human beings. To also recognize the potential for everyone to grow, learn and participate throughout our lives. And together push for policies that support all of us as we age, and counter ageism along with all the other forms of discrimination that we are all attempting to change and disrupt.”
Carlin shared some examples of the language used in the public discourse via verbal, written or images messaging before (fight aging) and after (How do you #AgeStrong?) the reframing aging terminology has been implemented. She said that ingenuity can be used to replace outdated thoughts with innovative ideas, and spoke about ageism and the stereotypes, prejudices and discrimination that occur because of implicit biases against older people. Carlin said it is important to avoid “frail” and “vulnerable” labels when one talks about older people.
Additionally, Carlin focused on intersectionality, where people hold identities that overlap, in aging. She noted that racism, sexism, ableism and many other -isms don’t independently operate—they intersect and their impacts compound on each other. Carlin said it is necessary to apply intersectionality and equity frameworks to rethink cultural conceptions of aging.
Other summit sessions focused on emerging health issues, long-term survivors and older adults living with HIV, aging and public policy and chair yoga.