Last Wednesday at the City's LGBT Center, in a first of its kind, historic town hall meeting nearly 200 people who lived through the first two waves of the HIV/AIDS pandemic came together to commiserate, formulate and activate a new group, Let'sKickASS.org (AIDS Survivor Syndrome) dedicated to meeting the unique needs and challenges of long-term, HIV/AIDS survivors.
The brainchild of local AIDS activist/writer and 30 year HIV/AIDS survivor, Tez Anderson, Let's Kick ASS is a grassroots project empowering Long Term Survivors (LTS) and citizens the group has knighted 'Wounded AIDS Warriors'.
Let's KickASS website explains, "Long-term survivor is a relative term, referring to those who tested HIV-positive before protease (inhibitor drug treatment) and HAART when testing positive was a death sentence. That population is now into midlife and elderhood. HIV and Wounded AIDS Warriors are anyone traumatically affected by the first two decades of AIDS, which can include those who remain HIV-negative and those who seroconverted later."
"AIDS Survivor Syndrome (ASS) is what I call what happens after the AIDS tsunami recedes." Mr. Anderson explained in an email exchange with the Castro Biscuit, "those first two decades of AIDS traumatized an entire generation. The signs someone may be dealing with ASS are: depression; personality changes; flashes of anger; survivor guilt; jumpiness and anxiety; emotional numbness; insomnia; social withdrawal and isolation; hopelessness; substance abuse; sexual risk-taking; and lack of future orientation. Any combination of those and other signs related to surviving when so many loved ones and community members died. I wanted to hold a town hall to take the pulse of the tribe. I knew how ASS nearly destroyed my life and talking to folks over the past couple years I realized that others were going through something similar."<!--more-->
It seems he had hit upon an idea that resonated with the community. That night a large crowd gathered in the Centers' Rainbow Room for the town hall entitled 'Definition of Brave'. The audience cut across every line of race, ethnicity, and social background in the Bay Area LGBTQ/AIDS community.
Representatives from many AIDS Service Organizations (ASO) or AIDS focused groups attended including SF AIDS Foundation, Sero Project, SF Council on Aging, Int'l Organization of Women Living with HIV, and Bay Area Positives.
Mr. Anderson co-moderated alongside Greg Cassin. They also assembled a panel of 20+ years HIV/AIDS LTS or HIV/AIDS caregivers that included Will Boemer, Bart Casimir (former Pres. of NAPWA), Ramon Martinez (STOP AIDS), Michael Siever, PHD. (Stonewall Project), and Ed Wolf (30 year Shanti volunteer) that fielded questions from the audience and provided personal perspectives to the evenings discourse while using the discussion to brainstorm ideas and issues for the new group to focus on.
The most repeated theme rising from panelists and crowd was how LTS specific needs are going, by-and-large, unmet by ASO's and that funding directed toward their well-being, study, and survival seem non-existent. Other repeated themes were demanding a seat at every table where AIDS is a focus and advocating on LTS behalfs. Advocate work was a top priority whether it involved procuring more affordable housing, studying the effects of aging and HIV, or the life challenging reality of multi-drug resistance that many LTS's are experiencing.
It was an emotional evening as some LTS who'd come to share were doing so for the first time. The pain of living and surviving the catastrophe of AIDS as young men and women now weighed heavily on their current middle age and elderly lives. Many provided examples of challenges surrounding procuring basic needs like housing, food, and comfort in a City where costs of all three are skyrocketing and housing and services continue to shrink. Others pointed to how decades of activism had led to burnout and how they felt the AIDS movement was being controlled by "AIDS, Inc." and drug company concerns over those who lived with the disease and activists.
A number of participants proposed a return to direct action alongside levels of self-care and group empowerment. Eric C. Ciasullo, a married father of two, former member of ACT UP, and board member of the now defunct National Association of People Living With AIDS summed it up best, "We need to see a more active push on our parts to be included on all levels of AIDS care, treatment, policies and politics. We can't wait and hope to be heard-- we must demand it."
Mr. Anderson's reaction to the night? "I was beyond thrilled," he wrote, "because it's clear that people are ready to begin a new chapter in the AIDS saga. It felt like a cross between an ACT UP meeting, a rally, and a tent revival. We had people from all over the Bay Area volunteering to help. We have big plans for the Let’s Kick ASS movement."
Let'sKickASS.org will be developing plans for the next event they hope to hold in mid-October that they foresee evolving into perhaps a monthly meeting. They know after this illuminating and well-attended town hall there is a lot of work that needs to be done to address the City's LTS and Wounded AIDS Warriors and many are ready to do it.