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。
“Community-based treatment, education and support is grounded with a firm belief in both the possibility of survival and a lack of denial about illness and death.”
---Sally Cooper. “Sorting the Hope from the Hype: Practical Suggestions for Community Based AIDS Treatment Education
Sally Cooper created possibilities, for she understood that merely surviving with HIV/AIDS is never enough. A possibility offers real evidence that there are others in the world who are invested in your vision for your life and will be at your side to help you achieve it. That is care.
Sally dedicated her life to creating the possibility of a life beyond an HIV/AIDS-diagnosis for marginalized people. Her 1997 article demands that AIDS service providers take the time and make the effort to understand what it is like to live with HIV/AIDS for each singular client they encounter. For her academic readers, Sally articulated this demand as implementing a “non-directive, client centered process recognizing the whole person.” That rather dry phrase echoes my own experience of becoming Sally’s client and friend because her empathic approach resonated with me. It’s why the biweekly Women’s Treatment Project meetings at the PWA Health Group became my second home. Sally listened to the details of my life. In response she provided a wealth of information that I needed and aided me in accessing treatments and services when other women in my group and I requested them. Sally always responded to us with great warmth, joy, and the utmost respect. She demanded that experts who met with us did so as well.
Sally was relentless and fearless in her approach to challenging current HIV/AIDS treatment regulations. Under Sally’s watch, The PWA Health Group, didn’t just distribute unregulated treatments to its clients. She understood the organization functioned as an ongoing AIDS demonstration, carrying AIDS medications in order to publicly challenge the Federal government to accelerate testing of novel therapies to treat HIV and HIV-associated opportunistic infections. Sally didn’t back away from unpopular potential treatments because of their negative clinical histories (she insisted on carrying Thalidomide when it showed promise for the treatment of lesions, sores, cancer, and tuberculosis but also gave extensive information on previous clinical side-effects). Sally’s clear-eyed fight for the quality of my health and the health of other women with HIV/AIDS does not prominently figure in the histories of AIDS activism—but it should. And while I still have more days and a rich full life in great part because of Sally, I can tell that story here.
Sally fue implacable y audaz en su enfoque para desafiar las regulaciones actuales de tratamiento del VIH/SIDA. Bajo la supervisión de Sally, The PWA Health Group no solo distribuyó tratamientos no regulados a sus clientes. Entendió que la organización funcionaba como una manifestación continua contra el SIDA, que transportaba medicamentos contra el SIDA para desafiar públicamente al gobierno federal a acelerar las pruebas de nuevas terapias para tratar el VIH y las infecciones oportunistas asociadas con el VIH. Sally no se retractó de tratamientos potenciales impopulares debido a sus historias clínicas negativas (insistió en llevar talidomida cuando se mostró prometedora para el tratamiento de lesiones, llagas, cáncer y tuberculosis, pero también brindó amplia información sobre efectos secundarios clínicos previos) . La lucha perspicaz de Sally por la calidad de mi salud y la salud de otras mujeres con VIH/SIDA no figura de tan conocida en las historias del activismo contra el SIDA, pero deberías serlo. Yo he sobrevivido mas de 30 años y ha sido gran parte gracias a Sally, y continuo contando su historia aquí.
“I call them patients, but they’re friends really. It’s hard for me to draw the line. Being Jewish I think I’ve got a strong sense of community, of looking after one’s own. And having spent most of my life as a researcher I never acquired the doctor’s ability to stay detached. There’s no way of switching off from death and misery.”
--Joseph Sonnabend “A Day In The Life of Joe Sonnabend.” The Sunday Times Magazine, July 19, 1992
It’s difficult to relate the way in which a community coheres in relation to death and misery. It’s even more difficult to reflect on the loss of that particular community feeling. The recounting of the history of early AIDS activism always includes descriptions of deep and intense bonds that point to a shared set of values and beliefs. When there is even more life than could have been imagined in the first decade of the epidemic however, the loss of that feeling in common cannot help but color how we narrate and experience historical accomplishments.
Joe Sonnabend exemplified the community values that formed in the crucible of the crisis. Joe was a laboratory scientist who pioneered the concept of creating research trials of AIDS therapeutic treatments in collaboration with those who were affected by the disease and he advocated for training treating physicians to accurately conduct the trials and collect data. Advocacy transformed into that idea a reality when Joe co-founded CRIA, the Community Research Initiative located in New York City, an institution that coordinated and conducted community-based clinical trials in order to expedite new treatments and while doing so, provide expanded access to promising but unapproved medication. Joe co-founded AmFAR (the American Foundation for AIDS Research) in 1984 with his patient, Michael Callen ,and with his colleague, Dr. Mathilda Krim, the first private organization to provide funding for AIDS scientific and medical research. And Joe co-founded the HIV/AIDS treatment buyers club, The PWA Health Group in 1987, which imported and sold promising experimental HIV/AIDS treatments not yet approved in the United States. In addition, Joe maintained an overflowing medical practice in the West Village, entrusted with the health of hundreds of PWAs.
When asked why he did all he did, Joe replied that he viewed himself as “a community activist and a sexually active gay man.” As an active participant in queer sexual culture, Joe used his professional skills to end a crisis that affected his own life and his community. He was beloved by his patients, treating each and every one respectfully for they were friends. But at times, Joe struggled to promote his brilliant insights -- like the prevention of HIV/AIDS through the practice of safer sex or the prevention of HIV-related opportunistic infections through prophylaxis treatments. His patient/friends recognized that struggle and took it upon themselves to partner with him. After his AIDS diagnosis, Michael Callen dedicated his life in support of Joe, articulating and publicizing his work and ideas. What is left unspoken in the decades since is how Joe’s unwavering dedication to ending the AIDS crisis and the trauma of experiencing the deaths of over three hundred patient/friends had long-lasting consequences. In an interview with – Joe reflected that “all these involvements have been intertwined over time and it has been burdensome.”
Joe retired in 2005. In 1974, when Joe moved to New York, he bought a grand piano on installment, for Joe never prospered financially either from his research or his medical practice. For decades, just before he began work, he played piano to calm himself. “Just “a few pages of music --- something romantic usually, or a bit of Bach.” Upon his return to the UK, Joe played more and composed classical music. To remember Joe fully we would need to acknowledge how, at times, we may have failed to support him. Maybe listening to the sonatas he composed might help us reflect on that and remind us of the need to ground ourselves in this history so we might compose our future work in accordance with Joe’s ideals.