Some reflections on the shape of experiences, both personal & historical — plus an announcement of new work & a film recommendation.
Containers do more than just hold things. They give them shape by setting boundaries and limits. The forms we choose to fit them in end up determining what they are.
Organic things, however — like historical events, human experiences, houseplants — have a tendency to overflow their containers.
I’ve spent much of the last month re-potting things.
It started with my expansive essay from February about It’s A Sin, which I re-fit at the request of different media outlets. You can read new versions of it in the Los Angeles Times and the queer online mag Them.
I say new versions because condensing a 6,000-word essay for a different audience isn’t just a matter of removing things — it’s more like taking a cutting from an especially voluminous plant, putting it in a new pot and seeing what grows.
Each time I re-set the boundaries of my thinking, new content sprang up. In the TV section of the Times, I was able to highlight the truly radical queer TV programs (like Channel 4’s Out on Tuesday) that tackled AIDS and other issues back in the 90s. In writing about activist counter-images of people with AIDS, I was pleased to recall a demo by lesbian ACT-UP activists at a 1988 MoMA exhibit of AIDS portraits.
Even with a limited word count, my purpose was to expand our understanding of HIV/AIDS historiography beyond that offered by It’s A Sin.
Milestones, Timelines
When I bought my houseplants during the first lockdown, the man at the garden center told me: don’t repot them for at least a year. With some of their roots poking through the holes at the bottom of the pots, that time had definitely come.
Last Tuesday the 23rd, Britain observed a day of remembrance for those dead to Covid-19, although the first cases were recorded in Wuhan in December 2019 and the first British death was on 6th March. Government and media have begun shaping our understanding of the pandemic by setting a marker of ‘one year on.’ Many of us will remember, though, that responsible theatres and businesses were voluntarily shutting down more than a week before. The 23rd actually commemorates the anniversary of Boris Johnson’s belated realisation that it was time to catch up to everyone else.
The advent of AIDS is traditionally pinned to the year 1981, as that’s when the CDC in the US first recorded cases of the syndrome. It’s A Sin contains its drama neatly within ten years (1981-1991) and five episodes. Some people who didn’t agree with my critique of the show pointed out that it was originally envisioned to be longer:
My problem with the show was never that it needed to fit more in (although, how hard would it have been to include a single female character living with HIV?). What I tried to articulate was that the shape of the story — with its progression from libidinous liberation to painful shame and death — reinforced the same old understanding of what AIDS meant for gay men. That story can be told across one hour or eight.
When we contain and demarcate an experience like HIV/AIDS, we implicitly offer a reading of what it means and whom it affects. As Sarah Schulman has noted, cases of AIDS-related pneumonia and other conditions were probably killing scores of homeless people and injecting drug users as far back as the 60s and 70s. The “crisis” began long before 1981 and only gained press coverage in the New York Times because enough (white) gay men with access to health care began dying.
AIDS in the popular imagination is bookended by another date, also commemorated by mainstream media articles. As a teen, my family subscribed to Time magazine and I still remember receiving the 1996 Man of the Year issue featuring medical researcher Dr. David Ho:
I didn’t know then that seventeen years later that I would be relying on the anti-retroviral therapies Ho helped develop in order to keep my own HIV to undetectable levels. The advent of effective ARVs was an undeniable turning-point in the history of HIV/AIDS but it was understood even then as something more conclusive. That same year, arch-conservative gay commentator Andrew Sullivan published an incredibly blinkered essay in the New York Times Magazine outrageously entitled ‘When Plagues End’.
For Sullivan, and others who could reliably afford access to the new medications, the crisis may have been, in some sense, over - but of course that denied the reality of so many around the world (and in the US itself, especially in communities of color) who couldn’t and still can’t afford the medications and continue to get ill and die.
Sullivan’s 1996 essay acknowledges that reality whilst dismissing it in a single breath. He notes, almost be rote, that “many Americans -- especially blacks and Latinos -- will still die,” yet assets a few sentences later that, with ARVs in existence, HIV “no longer signifies death.” Club nights like The Black Party are part of an “emergent post-AIDS gay ‘life style.’” The essay implies that the actual deaths of millions matter less than the signification of the condition granted to Sullivan and his privileged peers.
We’d all love for these pandemic to be over. Who doesn’t want to live in a post-AIDS or post-COVID world? But that’s not the world we’ve got. Ascribing a concluding power to biomedical interventions alone — whether antiretrovirals or vaccines — is a form of magical thinking that denies the realities of global inequality and distribution challenges, not to mention the irrationalities of human behavior.
Stories We (Live To) Tell
I was shown this chart when I was diagnosed with HIV. I was also being sold a narrative about the heroic intervention of Dr. Ho’s antiretroviral therapy.
You can see the drama reflected in the rise and fall of the viral load: following the initial spike at the point of infection, your body is able to fight back for a period of 2-10 years, until the virus starts to get the upper hand. Thankfully, in this story, ARV treatment comes in to ‘save the day’ at stage 4 of the chart, bringing the virus down, down, down to undetectable levels. Happy ending.
Unlike a movie, though, this chart has no endpoint. One lives on, taking pills daily, negotiating the minefield of HIV stigma and misunderstanding, coping with potential side effects, both physical and emotional. People living with HIV are sold the story of biomedical triumph with good reason: it’s important to build up our self-esteem, to counteract that dominant narratives that still associate HIV with death.
There are times, though, maybe years into a diagnosis, when things don’t seem as positive or as manageable. One’s viral load may remain suppressed but other challenges flare up.
It’s this story, based on my own experience, that I’ve been trying to tell in a new piece that will be available to view soon. It doesn’t bear much in common with It’s A Sin, except that it is about a white gay man (me) and it also features 80s pop music (sort of).
Live to Tell: (a proposal for) The Madonna Jukebox Musical is my attempt to pitch myself to the Queen of Pop, whilst also making sense of life with HIV. Like the virus itself, Madonna has stayed on top for forty years by continually replicating herself and absorbing everything around her. Spoiler alert: it’s not really a musical and I don’t have the rights to Madonna’s songbook. Instead, the jukebox format is a way for me to grapple with the narratives around life with HIV and my own desire for Reinvention.
First developed pre-pandemic at the Yard Theatre, I’m currently adapting the show into a digital version to be distributed by Battersea Arts Centre from 24th May-12th June. As with my plants, the show currently is getting re-potted into bite-sized streamable episodes. As with my Bromeliad pictured above, I’ve cut away the old outer leaves to uncover fresh green ‘pups’ within that will grow in new containers.
The art of constant adaptation is a challenge we’ve all gotten used to in this pandemic year. As we transform the live show into a digital experience, I’m determined not to make it seem contrained and constricted by the frame of your phone or laptop screen. Excitingly, it will be filmed in 360-degree VR technology, allowing for an immersive experience that will ‘overflow’ the confines of the boxes it’s put in. Of course, in all of this we’re being guided by Madonna, the Queen of boundary-pushing.
More info about Live to Tell will come soon in this newsletter: for the moment, please follow the show on Twitter or Instagram to stay updated.
All tickets are Pay What You Can, so you can book right now.
Coda: Non-Moralistic Movie Club
As you await Live to Tell, I’ll offer a movie recommendation for the coming months.
There are many stories left to tell about HIV, and it’s about time that we got some new representations. My show is driven by the personal and so it reflects my experience as a white gay man with adequate access to healthcare. Recent theatre like Donja R. Love’s One in Two and Michael Jackson’s Pulitzer-winning musical A Strange Loop are bringing Black, queer experiences of life with HIV to stages in the U.S. When will these receive the worldwide reach that It’s A Sin achieved?
A Year Without Love (2005) represents the kind of story that deserves a wider platform: set in the time after effective treaments became available, and created by someone actually living with HIV. This underseen Argentinian movie was actually the last film I saw in a cinema before lockdown, at a special Barbican screening in London. I went on the off-chance only to discover that captured the liminal experience of living with HIV unlike any other film I’ve seen.
A Year Without Love stands out because of the in-between-ness that it recounts with finely-detailed authenticity. Co-written by Pablo Pérez and based on his memoir, the film is set in 1996, that turning point year when ARVs were just becoming available. The title says it all: the film’s autobiographical stand-in Pablo (Juan Minujín) goes through twelve months of quotidian experiences like doctor’s appointments, odd jobs, and sexual encounters, all while writing a manuscript that documents his life with HIV. He lives with an aunt who doesn’t know his status and conducts tutoring sessions with privileged girls who don’t realize he’s gay. He moves between this domestic world and an underground leather club, where he becomes enamored with one especially beefy dom. Through it all, he debates with his doctor the benefits of going on new HIV treatment and negotiates how he can access the meds in South America.
Pablo’s story is presented without tragedy or moralism. He is not consumed by shame about his HIV, but is also not totally open about it (until his book is published). His dabbling in the fetish scene doesn’t offer him the release he thinks it might, but his desire to experiment there is never pathologized. This refusal to shape Pablo’s experiences into a tidily digestible narrative of tragic loss or ultimate redemption may account for the film’s failure to gain a wider audience. But its this very quality that evoked for me my own experiences of the first years after diagnosis, as one adjusts to a new daily reality and the rest of the world carries on indifferently around you.
Though the film won the Teddy Award at the Berlin Film Festival, A Year Without Love is not available on any streaming service. Luckily, those interested can view a decent print of it on a random Russian film site (which has an excellent queer selection!).
Check it out as you wait for Live to Tell to arrive on 24th May, and offer observations in the comments. I’d also love to start a roll-call of other lesser-known filmic representations of life with HIV. May we get more of them!