Remembrances of AIDS activists Sally Cooper and Dr. Joseph Sonnabend by Ivy Kwan Arce in conversation with Debra Levine.
In 1987, AIDS researcher and clinician, Dr. Joseph Sonnabend founded the PWA (People With AIDS) Health Group in collaboration with two of his patients, Michael Callen and Thomas Hannan. Joe also co-founded AmFar (The American Foundation for AIDS Research), and (CRI) the Community Research Initiative. He was a compassionate physician with a large HIV/AIDS practice, and he briefly was my doctor after my HIV diagnosis.
The PWA Health Group was a New York City community-based buyers club. At a time when there was scarce legal access to potential life-saving treatments for PWAs, the PWA Health Group imported treatments not yet approved by the US Food and Drug administration. The organization didn’t just sell drugs; it researched and distributed a bi-monthly newsletter directly to PWAs, Notes From the Underground, that reported on issues of AIDS treatment and access. Under its third Executive Director, Sally Cooper, the PWA Health Group expanded its programming in order to better support and educate women with HIV/AIDS about the range of clinical options tailored to their specific needs. Sally also created a Pediatric Working Group that focused on treatments for infants and children.
I arrived at the Health Group in 1992, seeking information about how to best care for my health concerns as an HIV-positive woman of color. Sally created a safe space for me and for other women of color with HIV/AIDS to ask how and where we could access services and treatments. When we needed an explanation for a symptom or problem, Sally invited experts to meet us and talk to us respectfully. Every other week, my peers and I sat around a table that looked just like this. This table design is called “A Thousand Flowers.” This table at the PWA Health Group became my lifeline.
Sally and Joe created the possibility for my long-term survival. At their tables, I felt most empowered to ask for the information and support I needed.
This website, “Thousand Flowers,” is my table. Here, I uphold Joe and Sally’s legacies. I created this in conversation with Debra Levine, a performance studies scholar and veteran AIDS activist, who wrote these texts. My intent is to honor the presence of AIDS activists whose critical contributions to the struggle had a lasting effect on people like me. Here I can illuminate their absent presence --Ivy Kwan Arce
#ACT UP #FIGHT BACK #FIGHT AIDS
我的目的是向艾滋病活動家致敬,他們對鬥爭的重要貢獻對像我這樣的人產生了持久的影響。在這裡,我可以照亮他們缺席的存在。