Chronic Conditions
HIV is still here. The coronavirus is too. And the erosion of support for science and public health is only intensifying. All of these remind us that the issues that undergird Daniel Fish’s play, Kramer/Fauci, remain all too pressing.
But, so too, do the countless daily acts of community members who care for one another in ways ginormous and unseen, unsexy yet special, never-ending and ever-vital. We sustain and nurture one another when the state and the markets do not. Checking in on your friend whose spoons or t-cells or fridge or hope may may be running low. Writing that letter to a stranger or your loved one in prison. Advocating with your local official or protesting harmful national legislation. Showing up for your neighbors and protecting one another from violence. Making sure a certain young person or elder has their hormones or meds, makes it safely to and from their appointment, receives a warm smile and embrace.
The debates aren’t just staged affairs. The stakes are very old and very pressing. They have everything to do with who gets to survive and thrive, and who is relegated to relentless, disproportionate suffering and death. I know this because I have been blessed to be held, challenged, guided, given to and nurtured by community — from my first experiences in shared HIV organizing efforts 32 years ago, to beginning to navigate the challenges of Long COVID six years ago. I often say that I could not have had better preparation for learning to live with a disabling chronic illness. For long before Long COVID settled in and laid siege to my nervous system, and some seven months after Larry Kramer and Anthony Fauci’s televised exchange on C-SPAN, I first began my work in community-based HIV prevention.
It was the summer of 1994 and I had the great fortune to team teach a photography class with Marcia Ochoa. We focused on material experimentation, storytelling, desire, wellness and the body. The class was organized by the Mission District’s Proyecto ContraSIDA Por Vida and Ricardo Bracho, who orchestrated the Colegio ContraSIDA — a free, bilingual, grassroots school for queer Latinx folks and against AIDS. Funding for the class was earmarked by Andrew Spieldenner through his youth organizing work at LYRIC in the Castro District. The Names Project’s storefront location at Market/Castro Streets provided their space for us to meet in the evening once each week. We borrowed a copy machine next door and – 90s style – turned it into an art studio. Photography supplies were donated by the Ansel Adams Center for Photography. The class culminated in an exhibition at a lesbian bakery in the East Bay.
That experience taught me so much about the power of people coming together when the world said we shouldn’t, wouldn’t, couldn’t. It taught me about the power of art to potently embody what discrimination debases, what hatred and neglect cannot constrain, what words may not always convey. The class taught me how to listen and laugh better, learn and teach more dynamically, think more rigorously, feel more freely, imagine more expansively. It taught me much of what I now deploy in my work at NYU, where I have the privilege of helping to lead the Department of Art & Public Policy at Tisch School of the Arts. Our program pulses with the possibility of change by considering the synergies of art and politics.
Organizations do not always survive, but organizing must evolve and be sustained. In 1997 the NAMES Project headquarters relocated from San Francisco to Washington, D.C., then later to Atlanta, and eventually disbanded with the AIDS quilt becoming stewarded by the National AIDS Memorial beginning in 2019. The Ansel Adams Center closed in 2001. Proyecto closed in 2005. LYRIC Center for LGBTQQ+ Youth, founded in 1988, continues its work to this day in San Francisco’s Castro district. And Marcia helped to co-found El/La Para TransLatinas whose vibrant community thrives despite compounding threats.
It bears repeating, and heeding. Although organizations do not always survive, organizing must evolve and be sustained. Now more than ever. Many contemporary examples abound. Some that are near and dear to my heart include the What Would an HIV Doula Do? Collective, who recently created a zine about myriad ways to be an AIDS worker; Bronx Móvil, who does lifesaving harm reduction work on the streets of New York City; Long COVID Justice, who leads national programs for and shares resources with the Long COVID community; and The Sick Times, a community-based digital newspaper and platform for those living with Long COVID — and those who care about us.
Our shared efforts today are the seeds for tomorrow. Fruition is not guaranteed. Cultivating new conditions of disability justice and collective wellness will require each of us in our own ways to steward and shape possibilities with courage, compassion, criticality, creativity, collective effort and considerable care.
Pato Hebert is Arts Professor and Associate Chair of the Department of Arts and Public Policy at NYU.