When I immerse myself in the archives shaped by the traumatic first decades of the AIDS epidemic, I am often surprised by the joy I find amid so much dark heaviness. One joy is reading the rich content in various publications made by and for people living with HIV/AIDS (PLWHA). Surprisingly, San Francisco did not have a publication by and for people with AIDS until the late 1980s. After all, New York City-based groups PWA Coalition and The Body Positive had flourishing publications run and led by PLWHA—Newsline and The Body Positive, respectively. 1
As a result, when PWA Voice showed up in San Francisco bookstores and AIDS agency waiting rooms in 1988, it did more than fill a knowledge gap. It served as a space of connection and community for PLWHA. Its brief and scattered publication history between 1988 and 1990 provides a front-row seat to the landscape of early AIDS care, treatment, and the interior lives and ideas of PLWHA–things that are not always reflected in histories of AIDS organizations that are shaped around the memories or agendas of HIV-negative individuals. Its contents reveal how its writers understood their experiences through connections with each other, with the broader community of PLWHA, and with others who they felt shared similar experiences.
PWA Voice cover featuring managing editor Tristano Palermino, 1989. From the author’s personal papers.
Unlike the sleek newsletters of many contemporary HIV/AIDS organizations, PWA Voice is relatively unfiltered. During its run, many gifted writers and journalists contributed to its pages. Sadly, their deaths cut short their potentially long-written legacies, further obscuring the newsletter’s visibility and legacy to a larger group of readers outside of that historical moment. What remains of its short print run, however, reveals that its writers drew powerful and intriguing connections to—and offered gestures of solidarity towards—people who had experienced another misunderstood and vilified illness: Hansen’s disease, more commonly known as leprosy.
PWAV’s primary goal was not to educate people unaffected by the AIDS epidemic. Instead, it focused on recognizing and uplifting empowered, yet sick, communities. As founder and managing editor Andre Laventure wrote in the first issue, “Regaining personal power—taking it back—that is the purpose of this newsletter.”2 This mission emerged, in part, from Laventure’s own experiences as a writer. He had written a piece for PWA Update, the newsletter and calendar of People with AIDS, the activities program of the care organization Shanti Project, through which many PWAV writers and editors met one another. Without LaVenture’s knowledge, PWA Update’s executive director Jim Geary heavily edited his piece prior to publication. Laventure was infuriated. In the fall of 1987, a group of PWAs gathered to discuss their general frustration with how all reading materials that were about their lives came primarily from AIDS service agencies not run by PWAs or explicitly rooted in their experiences.3After a period of several months Laventure put his money where his mouth was and edited the very first issue of PWA Voice in April 1988.
Andy Laventure, 1987. Photographer unknown. From Joseph Lane’s personal photos. Used with permission.
The first mention of connections between AIDS and leprosy, as Hansen’s is referred to in these articles, appeared only a month after PWA Voice began publication, in a May 1988 article by the artist and whimsical writer J. Clark Henley. In “Crybaby,” Henley describes his afflicted relationship with crying, from his youth to his AIDS diagnosis. Describing his sensitivity as a young boy, Henley recalls attending a birthday party where the neighborhood boys saw the epic film Ben-Hur. Henley found himself unprepared for the emotional melodrama that intertwines with the epic’s action sequences, especially the moment when Ben Hur’s mother and sister are almost stoned to death as they flee to the leper cave. Henley experienced what we would call a panic attack, complete with gasping and endless tears, ending with him being escorted out of the theater. “Evidently,” Henley muses, “I had single-handedly separated the men from the boys.”4 The incident furthered Henley’s alienation from the young straight boys of his class and his own interior emotions.
The leper scene from a 1903 film version of Ben-Hur. University of Washington, Public domain, via Wikimedia Commons
Thereafter, Henley took great efforts to block out his tears, which he succeeded in doing until months after his AIDS diagnosis. A random viewing of a sappy Mother’s Day TV commercial prompted his tears to return full force. “I cried for the mother who was remembered. I cried for the mother was stoned for being a leper. I cried because I had become a leper [to the boys of his neighborhood]; I cried because AIDS is just like leprosy. The odd thing was that I couldn’t figure out who I was bawling for; was it them, or me, or us? But then I realized it didn’t matter. Tears are Tears.”5 Four months after his first essay and illustrations appeared in the pages of PWA Voice, Henley died. His loss was palpable. Laventure wrote an editorial honoring Henley: “Undeliverable As Addressed”. Pondering the young newsletter’s future without Henley, Laventure confessed: “It’s not half the fun without you.”6
PWA Voice contributing editors Mark Grossfeld and Clark Henley attend Shanti’s PWA Pastel Party, 1988. Photograph by Joseph Lane. Used with permission.
The connections Henley saw between the two illnesses were made much more explicit in the pages of PWA Voice a year later. The Summer 1989 issue included David Glassberg’s account of a tour he and his lover, PWA Voice managing editor and activist Tristano Palermino, had made to the last leper colony in the U.S.: Kalaupapa, Hawaii.7 Glassberg’s feature is part travelogue and part political analysis. He and Palermino had accompanied a group of friends on a visit and to assist with a training for AIDS care providers and advocates in Maui. On a day off, Glassberg and Palermino decided to visit Molokai, which, at the time of their visit, was relatively free of major commercialization compared to the other islands. Molokai had been the “dumping ground” of leprosy patients in the late 1800s, a vast majority indigenous Hawaiians. The quarantine of Molokai’s residents had been lifted in 1969, but the forced relocation and segregation had been so traumatic that many residents chose to remain on the island. In 1983, Kalaupapa had been declared a National Historic Park.
Before their visit, Glassberg read the memoirs of Olivia Robello Breitha, a Kalaupapa resident. “In this book she talks about the Leprosy virus called Mycobacterium leprae,” Glassberg tells his readers, “Having been diagnosed with MAI or Mycobacterium Avium Intracellulare just prior to flying to Hawaii, I discovered that the medications I am taking to control my MAI infection are the same drugs presently prescribed for people with Leprosy.” 8 This was one of several uncanny parallels they discovered during their visit.
A view of Molokai, 1922. Public domain, via Wikimedia Commons
Glassberg and Palermino’s tour guide was Richard Marks, a noted spokesperson for Molokai residents and a former resident of Kalaupapa. When the couple disclosed to Marks that they had AIDS, he remarked that the stigma of leprosy was comparable, a connection he himself often made while conducting group tours. In their conversations, Glassberg remarked that, like AIDS, it is not leprosy that kills a person; the virus drastically weakens the immune system, allowing other infections to cause illness and death. Another topic that emerged in the conversation was quarantine. Quarantine had the main strategy of public health officials at Molokai when it came to leprosy patients, who were abandoned without care. For Glassberg, the realities of AIDS kept intersecting with the past traumas of people with Hansen’s disease. Glassberg concludes, “The struggle continues for us, for them, for all those who come after us, epidemic after epidemic. When will we ever learn . . .”9 Seven months later Palermino and Glassberg were hospitalized for a final time. Although they were initially separated, Glassberg was brought to Palermino’s room when they decided to stop his life support. Glassberg was with Palermino for the final two hours of his life. Less than a month later Glassberg died.
When processing the permanence of the loss of lives and future writings of people like Glassberg, Henley, and Laventure, an overwhelming grief occurs. But it doesn’t quite feel like mine. Like Henley, I am left asking who am I crying over? Fortunately, for readers or historians who want to know more about PWA-centered work, two issues of PWA Voice are available to read via UC San Francisco’s Calisphere account via the AIDS Health Project collection. Andre Laventure hoped to build connection and community through his newsletter, maybe now I won’t feel like their only reader.
- The Body Positive is now known as the website resource The Body. Why it took so long for such a publication to emerge in San Francisco is unclear, but there is much room for research in this area. During the ten years I have spent researching and writing about HIV/AIDS history, I have yet to come across any peer reviewed or popular writings explicitly about self-produced PLWAH led publications, with one exception being Jonathan Kaufman’s excellent Hazlitt essay, “Get Fat, Don’t Die,” about Disease Pariah News in the 1990s. Gay and lesbian publishing and literature of the 1980s and 1990s has been written about extensively. But the category of PLWHA extends beyond queer identities and thus much of this work (a mix of personal, practical, and creative writing) has been left a the margins of the PWA self-empowerment movement narrative. Beyond political organizing, visual art, treatment access, and public policy there is still so much more to be learned from this part of the epidemic’s early decades.
- Andre Laventure, “Editorial: Power and the Press,” PWA Voice: Published by and for People with AIDS and those affected by the AIDS crisis, Spring, 1988, p. 12.
- “New Voice: Newsletter Helps PWAs Take Back Personal Power,” Bay Area Reporter, 12 May 1988.
- Clark Henley, “Crybaby,” PWA Voice: Published by and for People with AIDS and those affected by the AIDS crisis, Spring 1988, p. 10.
- Henley, p. 10.
- Andre Laventure, “Undeliverable As Addressed,” PWA Voice, Autumn, 1988, p. 2. LaVenture also let Henley know he adopted an elephant in his name, which apparently delighted Henley’s surviving family. Laventure assured his friend that he had found a new form of coping, “I call it primal shrug therapy.”
- Palermino had become the managing editor a few months before the piece ran, taking over at Laventure’s request, as his own ability to work as editor had been severely impacted by declining health. With Laventure’s encouragement, Palermino expanded PWA Voice’s scope to include public forums for PWAs and their caregivers, as well as a speaker’s bureau.
- David Glassberg, “A Journey Back to the Present: Visiting the Leprosy Colony at Kalaupapa,” PWA Voice, Summer, 1989, p. 8-9.
- Glassberg, p. 10.
