What Are They Fighting For? On Oliver Husain, Kerstin Schroedinger, and the community who embraced DNCB as an experimental treatment for HIV
by Theodore (ted) Kerr
The first responders to HIV were the people living with the then-unnamed virus. They taught doctors how to care for them, journalists how to cover them, and government officials how to better and more humanely do their jobs—all while creating care protocols, mourning rituals, and culture that continue to circulate and inspire. It is no wonder, then, that over generations the “for us, and by us” approach has been the dominant mode of responding to the epidemic. When no one was looking out for them, communities of people living with HIV not only taught themselves how to live and die with the virus, they also came up with ways to treat it. Before lifesaving medication became available in 1996, a lot of people with HIV had hope in alternative medicine, the ingenuity of their peers, and the idea that maybe, just maybe, the eradication of HIV was hiding in plain sight for them to discover.
Among the most colourful (literally) of these hopes was dinitrochlorobenzene (DNCB): a common chemical used in the processing of colour photography that, starting as early as the mid-’80s, some HIV+ people experimented with to treat the virus—or at least reduce the appearance of lesions caused by Kaposi’s sarcoma (KS), an AIDS-related opportunistic infection. As a fact sheet about DNCB from the Canadian AIDS Treatment Information Exchange explains:
“DNCB is applied to the skin where it is absorbed and carried to the lymph nodes by immune system cells. Within the lymph node network, DNCB is thought to stimulate several parts of the cell-mediated immune system—specifically the parts that are weakened in HIV disease. DNCB seems to prompt the cell-mediated immune system both to produce chemicals (called cytokines) that regulate the immune system and to increase specific immune cell levels.”1
Artists Kerstin Schroedinger and Oliver Husain illustrate the process of applying the chemical in the short film Contact Hypersensitivity (DNCB extract) (2019/2020). Starting amid the depth of a black screen, a soundtrack by artist and DJ Ain Bailey begins, setting the tone with a “dark, deep, warm” club vibe, as Husain describes it. The next thing we see is a spotlight upon a close crop of flesh, pressed into by a finger, its nail replete with polish. Upon its release, the surface of the body rebounds. This shot establishes a fact of our flesh: it resides within the thin protective organ of our skin, a porous layer upon which much can happen.
From there, Schroedinger and Husain explore topical possibilities of skin as it relates to DNCB. Against vibrant, shifting backgrounds of jewel tones and neons, a library of hands equipped with thin brushes and Q-tips paint and swab a gelatinous substance evocative of DNCB, a powder which was then mixed with Vaseline or the like to be applied onto a forearm, a back, a thigh. These application sites are often tinted and hued using makeup, sparkles, or body paint. For some, this might suggest a wink and a nod to campy queer culture in the face of AIDS. Others may think of the song “Kaposi’s Koverstick” by the US punk band Transisters, fronted by legendary activist and artist Chloe Dzubilo, a trans woman living with HIV, or Australian queer icon and performance artist Leigh Bowery and his use of polka-dot makeup, which some commentators at the time said was used to cover up KS lesions. As the film progresses, the treated patches are covered by white Band-Aids, sometimes in a single strip, sometimes affixed in an X.
In terms of the science, it is clear that DNCB did have some nominal positive impact for people with HIV; however, the medical regulators at the time were not adopting it as a treatment. For some activists within the AIDS response who were skeptical of authority, the lack of official adoption worked as a seal of approval, positioning DNCB as a treatment worth fighting for. Among its most fervent champions were members of ACT UP/San Francisco (ACT UP/SF), a controversial chapter of the seminal AIDS activist group that defected and became best known for their AIDS denialism. An archived ACT UP/SF website reads, “We dispute HIV as the cause of a growing list of old diseases that have been officially categorized as AIDS.”2 Their dangerous thesis was that HIV does not lead to AIDS, or that what gets called AIDS is actually a side effect of other things, such as recreational drug use, or of antiretroviral pharmaceutical treatment, such as azidothymidine (AZT). This dangerous line of thinking impacted how national leaders, such as former South African president Thabo Mbeki, shaped their country’s epidemic response, with devastatingly tragic results, and continues to result in people going off their medications and dying prematurely.
One of the elements of denialism is a rejection of pharmaceuticals. In Mbeki’s case, drugs coming from the West were not to be trusted. Instead, more solutions rooted in Africa were to be engaged. Similarly, in the ’90s, as part of the denialism, ACT UP/SF members like Michael Bellefountaine3 and David Pasquarelli4 railed against drug companies and the AIDS service organizations that supported the use of their products. Instead of medication, ACT UP/SF encouraged “a healthy lifestyle through vegetarianism, medical marijuana, and questioning the medical orthodoxy.”5 A 1997 SF Weekly article6 documents the lengths Bellefountaine and Pasquarelli went to in their quest to follow through on challenging that orthodoxy, including dousing pre-eminent AIDS doctors in fake blood at an AIDS convention, dumping 25 pounds of used kitty litter on the director of the San Francisco AIDS Foundation, and punching Larry Kramer, the inspiration behind ACT UP, at a benefit dinner.
At the time, their actions were roundly criticized, and for good reason. What they were espousing was causing suffering, division, and death. Looking back, however, one is able to see with more nuance—grace, even. This is what happened to me after watching Contact Hypersensitivity (DNCB extract). Husain and Schroedinger’s aesthetics for me are trippy, their use of colours and music destabilizing. I am invited into an altered state, an otherworldly place, experienced as if in a fever dream in which interiority is explored and expelled: I am sweating out toxins; I am myself, stable, but I am also anything and not just me; I am being cared for, I am doing the caring. This idea of interdependence is illustrated vividly during a moment in the middle of the work where the camera pulls back and we see the shoulders, torso, and arms of two people— flesh made relative to the larger map of bodies. In this scene, a bulbous, shiny plastic pillow is held in place by one person, underneath the treated arm of another. Picture it: the top of an arm, shiny with substance; the bottom of an arm, supported by a held cushion. Now take a minute and ask yourself, which part of this scenario counts as the treatment? The substance on the arm? The pillow? The hand supporting the pillow? None of it? All of it?
Later in the short, the ambiguity of care is explored again. The camera frame is filled by the screening of a 16mm film the duo made—a film within a film. The fever dream continues, more abstractly: everything is scratchy, yellow, and spectral. Across the bottom half of the screen, the dark outline of branches ghost past. A latex-gloved hand, positioned in profile, comes into focus. At this moment, Husain, in a voice-over, asks, “Where is the end of the immune system?” The hand, as if trying to venture a response, begins to point at different areas on the screen, as the artist asks, “Is it here?…” The finger points, over time, in all directions.
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Husain and Schroedinger’s work together began with silence. Before Austria-based Schroedinger knew anything of DNCB, she was considering the iconic AIDS poster with the black background and pink triangle that includes the text at the bottom that reads, “Silence = Death.”7 This led her to research the earliest decade of the AIDS crisis in the US where she found stories of independent guerrilla AIDS treatment communities, including that of DNCB. She passed on what she was learning to Toronto-based Husain, who shared her interests. Since 2016, the pair have produced not only the film, but also an ever-expanding body of research: an archival deep dive trip that Schroedinger made to San Francisco, a running list of 20th-century cultural production about the chemical, a suite of interviews with Toronto AIDS activists, as well as a performance. In watching documentation of the latter, at mumok in Vienna, I noted an endearing chemistry between the two artists as they use contemporary dance moves and recite text from the archives. There is an openness and relatability throughout. Afterwards, people from the audience approached the artists privately to share their stories directly or indirectly related to DNCB.
In a Zoom conversation I had with the artists about their work, I was struck by how blurry their line be- tween research and community engagement seems to be. They explained that their short film was informed by the video works of Stuart Marshall, Michael Balser, John Greyson, Richard Fung, Andrew J. Paterson, and other artists who made work about DNCB. These tapes came to light after a conversation with Lisa Steele, one of the founders of VTape, where Husain is a board member. Amid the many tapes there that Husain has watched and touched and read about over the years were these works alive with first-hand experience of the chemical, hiding in plain sight. As their research continued, they came to meet other people in their immediate and extended communities who also had knowledge and experience of DNCB, including the activists they interviewed for their project: Tim McCaskell, Alexander McClelland, Ron Rosenes, and Darien Taylor. As all of the connections accumulated, it became clear that DNCB is not merely a footnote or curiosity but a history unto itself, connecting people and time. I find myself taken by the artists’ process; they are constantly available for more: feedback, information, responses, and connection. It is a type of knowledge production that makes me think less about art, and more about the circulation of information, especially as it relates to HIV.
In 2018–2019, I co-organized a reading/screening series with filmmaker Shanti Avirgan, spearheaded by anthropologist Nicholas D’Avella as part of an AIDS and culture collective we are part of called What Would an HIV Doula Do?8 Our series was titled Uneasy Medicine: AIDS Pharmaceuticals & Other Ways of Caring, with a goal to engage friends and peers to “consider HIV in relation to the pharmaceutical industry, colonization, and forms of care that fall beyond biomedicine.”9 At the heart of our series were the following questions: How does the pharmaceutical industry craft profit from illness? What might happen if we honoured, acknowledged, and communicated the fact that drug discovery frequently draws from Indigenous peoples’ botanical knowledge? How are Western medicinal treatments combined and remixed with healing practices different from those recognized as effective by modern science? How can we form political alliances across practices of care to build better worlds together? The goal was not to find answers. Rather, in our monthly gatherings over bodega snacks, we would engage in what D’Avella called “a collective practice of knowledge sharing”10; it was as much about the reading or the screening as it was about how we came together and made sense of what we were processing and how that related to our own understanding of our bodies.
Amid the Uneasy Medicine readings was “The Embodied Past. From Paranoid Style to Politics of Memory in South Africa” (2008), in which scholar Didier Fassin explores AIDS, politics, and the role of memory under Mbeki’s rule. Fassin coins the phrase “embodied past,” which he defines as follows:
“the way in which individual trajectories and collective histories are transcribed into individual and collective bodies, in terms of affects and emotion, disease and comfort, mourning and pleasure. In other words, it is the way through which social structures and norms inscribed in the long term of historical changes impose themselves on [people], both in their everyday existence and in the meaning they give to their life and actions. … The first side is objective. It is the physical mark left by history in terms of deterioration, wearing, fatigue, illness, violence. … The second side is subjective. It is the psychic trace left by memory in terms of the interpretation of the social world and its source, in terms of individual and collective narrative recon- structing local truths.”
When I go back to read the printout I made back then in early 2019, I find a summative note in the mar- gin of Fassin’s text that gives me pause. I recognize my printing, but am not sure about where the words came from. Did I write them while I was reading? Was it something someone wrote on the shared craft paper that I then copied, or was it something someone said during the discussion that I jotted down? In any case, it underscored yet another connection between Uneasy Medicine and Schroedinger and Husain’s process: no one can actually know something on their own, even as it relates to one’s own past. Information is not (just) content, it is also the result of collection and assemblage, which, when explored with others, can highlight the multiple stakes undergirding a life, a movement, or even a shared community ethic.
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In a 1987 New York Times article about DNCB and other community treatments, Dr. L. Bruce Mills, one of the earliest users of DNCB for HIV, told the paper, “These are desperate acts and they are inevitable in the face of a disease we don’t treat so well.”11 Desperate in the face of death and suffering—who wouldn’t be? In Husain and Schroedinger’s interviews, desperation comes up often. McClelland, who has written about anarchy and HIV with activist Zoë Dodd,12 urges the duo to remember that community developed HIV treatment was born out of a lack of options, and became a way of life for some people. Taylor, too, in her interview with Husain and Schroedinger, talks about desperation and its relation to DNCB: “Because so many people were so desperate, there was this real morality that developed around whether you took it or not. There was a lot of faith and belief of desperate dying people.” Examined across time and in conversation with others, as the duo is doing, desperation has emerged as a way into uncovering some of the community ethics that might have been in play.
Returning to Fassin’s idea of the embodied past, ACT UP/SF members were not just fighting to save their individual bodies against the devastation that the historic and ongoing impact of systemic bias in the face of a deadly virus was having upon them. They were also fighting for a way forward that ensured the communities that were first responding to HIV—who were having to survive amid stigma, discrimination, and criminalization—were centred, and proven victorious for the record.
As ACT UP/SF were fighting for DNCB, the medical and AIDS non-profit establishment was standing up for AZT, which at the time was being prescribed at doses so toxic that it unfortunately provided credence to AIDS denialists’ theories. Whereas AZT was approved by the FDA in the US in 1987, DNCB was vetted by grassroots community voices, including HIV activist Charles Caulfield who wrote about it for his column in the San Francisco Sentinel. An endorsement from the trenches, such as that given by Caulfield, who like Bellefountaine and Pasquarelli was living with HIV, was worth more than anything a drug company could say. It was the confirmation of a “for us, and by us” solution. Later, in the introduction of his collected columns, co-authored by Billi Goldberg,13 The Anarchist AIDS Medical Formulary (1993), Caulfield provided context to his writing:
“It offers a radical departure from conventionally sanctioned medical approaches to HIV/AIDS which appears to accept the endpoint of death as inevitable. The content of these essays has been drawn from the collected experiences of people living with AIDS, and their successes and failures in combating the progression of the disease in their bodies and their communities. It is clear that what is needed to survive and recover from this illness is easily available and accessible to us right here and now. Those of us who have achieved this goal stand as a testament to the courage and perseverance required to stand up to the enormous pressure of the pharmaceutical industry’s attempts to cajole us into turning our lives over to them and their influence.”
Forty years into the AIDS crisis, centring the knowledge of people living with HIV, as Caulfield does above, is a pillar upon which the AIDS response is often placed. We see that in everything from the role that consumer advisory boards are said to play within contemporary AIDS service organizations to the enduring legacy of The Denver Principles (written by men living with HIV in 1983), which stated that, upon diagnosis, people were not AIDS victims but rather people living with HIV.14 With that in mind, it is not that strange that Bellefountaine, Pasquarelli, and Caulfield would be against the forces that they felt had endangered them, nor is it that complicated why they so intensely doubled down on their beliefs. It is a romantic, dangerous, and loyalty-informed kind of stubbornness that seems to toe the line between activist hubris and radical activist faith rooted in something real and true: that people living with HIV have specific and special insights into what is needed for their survival.
Reflecting on the ACT UP/SF brand of denialism, I think it was less about DNCB or any specific treatment per se, and more about who had the right and authority to decide what happens to a body made sick, made marginal. For Bellefountaine, Pasquarelli, Caulfield, and others, it seemed that the question of treatment was as much about what they put on and inside their bodies as where it came from. Maybe it is my own romantic delusions, but I wonder if for them, an undying belief in their positive community was a form of treatment they felt was worth dying for.
Through Husain and Schroedinger, we are provided an opportunity not only to learn about DNCB and its rich histories but to consider and investigate the complex stakes that surrounded its usage. While there is little collateral damage concerning DNCB as an HIV treatment, the calamities around AIDS denialism are deadly, ongoing, and destructive. I used to think that by ignoring AIDS denialism, I was depriving it of fuel. And maybe that is true, although I also wonder what can happen if we look straight into denialism and consider why some people are drawn in. It is easy to judge people’s choices, especially from the past. It is harder to sit with the context of the lives of those who made those choices. But by doing so, we invest in nuance, and reveal the traces that animate our ongoing struggles—such as the anti-vaccine and anti-masker beliefs that plague another current pandemic. Looking back through a lens of generosity and with deep belief in interconnectedness, I think, is at the heart of Husain and Schroedinger’s exploration.
• • •
A few days after our Zoom chat, Husain emailed me, letting me know that there was more to share, specifically around that moment in the film with the gloved hand against the yellow sky. He wrote: “[The] film was processed with organic, homemade developer replacing the toxic chemicals. We used a recipe based on turmeric. Turmeric because it is yellow—DNCB was used as part of the yellow colour process by Kodak—and because it is a healing plant with anti-inflammatory effect.” With their recipe, Husain and Schroedinger retrace the past, but with less toxicity, both material and social.