On Reading And the Band Played On
“I dozed, I slept. My sleep broke on a hug,”
—Thom Gunn, from The Hug
2014 started off with a stomach virus. I checked into the ER and a nurse hooked me up to an IV before moving on to the next patient. Somewhere between a snore and an EKG beep, a younger nurse approached, somewhat nervous, and asked if I would like a free HIV test via mouth swab. She explained I fit the age demographic for those at high risk of infection (18—65). As I answered the nurse’s questions, my stomach flu felt suddenly irrelevant. Not only was this test free, but the test was also encouraged and standardized—not to mention bloodless, quick, and with same day results. The social, medical, political, and moral threads of HIV/AIDS all seemed to connect on the tip of that cotton swab. In my waiting, I considered the heritage of the moment, buttressed by a recent reading of Randy Shilt’s 1987 work of reportage, And the Band Played On.
I thought about how drastically different this would have been ten, twenty, thirty years ago. Many of those cataloged in ATBPO could easily have been a profile of me or my friends if we had been around 30 years earlier. Time was our only difference. I owe a part of my health and welfare to being born after antiretroviral therapies were already available, information was already accessible and actively promoted, and hospitals learned to test and care for HIV. Yet, many of my peers seem unaware of the shoulders (and graves) they stand on. Even more of my peers remain surprisingly uneducated on current treatments, prevention, and how they themselves encourage a culture of stigmatization.
Peter Staley notes about AIDS awareness, “there have been countless ad campaigns, online and otherwise, but they fall on deaf ears.” This is supported by data: a third of new HIV infections in the United States occur to people between the ages of 13-29. Further, this age group reflects the largest increase of infection compared to all other age groups (CDC). Why are so many young gay people becoming infected in a world with options for prevention? Finger pointing abounds, not often enough at a public school systems that feel sex education is best left at home (where gay youth may not have a sexually educated parent), but most rampantly the finger lands on stigmatization within our community.
The current environment surrounding HIV/AIDS stigma differs, Staley argues, from that of the past: “[during the crisis] we felt like one community. We were all living with HIV, regardless of status.” Yet, more often than not, my only friends who are aware of HIV/AIDS activism, history, and current treatments are those who have been diagnosed positive. Gay men who choose to remain unaware of HIV/AIDS history deny themselves a lens to see their selves in a larger picture, a picture that can connect us with our creative selves, a picture that resists being placed in boxes or given labels.
For some of us, being gay is our most sacred (and enjoyed) “self”—the one in which we hold the most pride. This self is largely rooted in offering alternatives to the norm. Early queer championing of topics and versions of humanity deemed too perverse or too intolerable once propelled us in imaginative directions, and in doing so, harbored a community that was less concerned with how to fund large lobbyist groups and integration than it was with connecting with one another and looking towards a horizon not yet seen. You can see these efforts documented across a variety of queer life: the drag balls in Paris is Burning, the colorful atmosphere of Florent, or the brazen activism of ACT UP in How to Survive a Plague.The worlds these films document represent moments when queerness transcended a label and became something more. Queerness uses the creativity born out of survival to make the world better—let us not abandon this!
In our efforts to join the institutions which historically have denied or oppressed us (military, marriage, church) we’ve also began to associate ourselves with those institution’s values and lack of understanding. The lack of understanding may not always come from a bad place. It just comes from a lack of queered experience. In our case to gain the rights to marry, serve, and worship we’ve had to sell ourselves as though we’ve been untouched by our queerness. In doing so, we’ve resorted (sometimes unknowingly) to using the tactics of the clubs we’re seeking to join: shaming or othering those we perceive to be below us: doing so gives us a sense of empowerment.
Through our shaming, subtlety and overtly, of HIV positive people we have pushed our queerness away in favor of being “just like everyone else”, and some hope, eventually to something not even gay at all, but “normal.” These efforts have (re)positioned HIV/AIDS counter to that norm, fostering ignorance and replacing anger and fear with indifference. In the film adaptation of And the Band Played On, Dr. Donohue proposes, “When the doctors start acting like businessmen, who do the people turn to for doctors?” Likewise, it might be important to ask, when queers start behaving normally, who do we look to for alternatives to normality?
As I read And The Band Played On, I wanted to interact more with the text. I found the initial descriptions captivating and the characters engaging. I have a largely dormant twitter account and decided to tweet out Shilts’s prose with the added contribution of tagging the institutions and people mentioned by the book. One example, a line from page 43, “In a conversation, the patient mentioned he was gay, but Dr. Gottlieb didn’t think any more than that the guy might drive a @Ford.” #p43“. The tweets occasionally felt exhilarating as giant corporations and bureaucracies, like the Ford Motor Company, that I otherwise would never contact, were named within the context of Shilts’s research. Doing so felt rebellious as institutions were implicated back to a period some would rather forget. My last tweet in the series was one such example and highlighted the lack of communication and will between two large governmental health organizations: ”Still, [Jim] Curran knew that, at best, the @NIH doctors had a condescending attitude toward the younger hotshots at the @CDCgov.” #p95“. As the reportage continued, the tweets traced the etymology of the virus from its origins as “gay cancer” to “GRID” and finally to HIV. My project started to lose its focus on big bureaucracies and companies as HIV grew into its own body.
By the time the virus was named in the book, the range of tonal options for my tweets was reduced considerably and I found myself missing the tweets which commented upon more approachable themes of love: “Cleave never viewed sex as conquests; they were little romances, brief studies into another idea of what a human being could be.” #p64. The tweets, running parallel to the narrative arc in the book, became increasingly hopeless and frustrated. But more importantly, I began to have issue with the villain of the book. It wasn’t, as I thought, the disease that destroyed so many, but a man Shilts labeled as “Patient-Zero”: a Canadian flight-attendant who frequented bathhouses across the country. There seemed to be something not quite right in naming this man as the cause of an epidemic. It undid the storyline which built up legitimate criticism against organizations and bodies that were supposed to step in during an epidemic. If Shilts couldn’t make HIV the antagonist than why not at least point a figure towards a supremely inept and homophobic Reagan administration or a turf-war minded National Institute of Health? Instead he puts one of the victims of the disease as its harbinger, perhaps creating in his influential book, the first printed example of gay-on-gay shaming.
As a result, I stopped my twitter project after reading page 95. It had simply become too depressing. The narrative spark I first encountered in the book, the spark which motivated me to annotate, had passed on. Yet, I still continued to read. The book was offering a perspective of my identity that I couldn’t access on my own. It added a dimension to the queer part of me which might be described as a “flat character” in the literary world. Flat characters do have purpose—or maybe better stated—they only have purpose. Gayness, when flat, is only about its utility: sex. Gayness, when round, is about its human foibles: we are an identity defined by utility yet able to achieve passion, heroism, villainy, depression, joy and the whole rest of the lot. ATBPO gave context to the many parts of who I am or who I can be.
Some of my peers seem too comfortable with their flatness. Perhaps embracing one’s utility can offer some sense of steadiness; exploring notions of ourselves often feels unsteady and may end up yielding more questions than definitive answers. As a writer I know that these sorts of truths are never easy to live with or to arrive at. Searching for meaning and roundness is hard, grueling and uncomfortable work. It should also be mentioned: no one aspires to be the flat character—we want to be Kirks or Spocks, not just another Red Shirt.
Knowledge of HIV/AIDS issues requires an understanding, even briefly, of that sad narrative which made me quit my somewhat pointless twitter project because “it had simply become too depressing.” Blame and shame, the current standard of discourse surrounding HIV/AIDS, should be replaced by community and openness. However, those notions of community and openness can’t occur if one doesn’t strive to understand the other groups and identities to which they also belong. If you’re gay, you’re inexorably linked to people living with HIV. That might include someone you know but also includes the millions of people you don’t know. Conversely, if you’re living with HIV, you’re inexorably linked to people who are gay. Making a bridge to see beyond yourself, by way of a common ground shared with other individuals, is a giant stride towards a grand truth: that community is ultimately created through compassion. And compassion is one of the only tools we have to stop cycles of shaming and disempowerment.
Those who do not embrace that their gay identity is also an identity connected with HIV do so out of abject fear. Fear that a part of the self they admire and carry pride for, might be wrought with sickness, depression, and emptiness. Through learning about HIV, however, one can not only discover how they are connected with gay men older and younger, but the multitude of people who are present with us and also being rocked by this disease and who continue to combat it, oftentimes without the science we take (or sometimes don’t take) for granted. Not to mention, in our post-modern world, sickness, depression, and emptiness can exist separate from any named disease, present or not. When Staley laments, “we felt like one community” his words sound far and distant. But they can be near and present. This does not have to be a narrative of fear or shame. It can be a story about a gut-check, where a group of people find themselves an opportunity to link their individuality with individuals not unlike themselves. And in doing so, they not only round out their sense of self but realize how powerful a role they have in shaping this story.
Craig Moreau's most recent work appears in BOMB, Electric Literature, and The Harvard Summer Review. He holds an MFA from NYU and his collection of poetry, Chelsea Boy, was published by Chelsea Station Editions in 2011. He currently lives in Philadelphia where he teaches at Temple and St. Joseph’s Universities. You can follow him at chelseaboynyc.com.
An audio version of this essay appeared on The Drunken Odyssey.
Author photo by Demian Rosenblatt.