It seems like mainstream society has finally caught on to the way HIV treatments brought an end to the AIDS era and ushered in the age of living with HIV. Eighteen years late to the party, but to borrow a great line from the The West Wing, let’s just celebrate the fact they showed up at all.
As I noted in my last post about the “Bareback Backlash”, it has been hard, in the meantime, to do prevention messages about sex without condoms when our funders can open The Age and find Karen Kissane talking about unprotected sex as “Dancing with Death”.
As Dion Kagan notes in Kill Your Darlings there has been a recent wave of films and television events, for a combined gay and heterosexual audience, in an emerging genre of “AIDS nostalgia”. I’m thinking of films like Dallas Buyers’ Club and television series like Angels in America and The Normal Heart.
I’m not sure these are unprecedented; there was The Hours before them and Rent and Philadelphia, etc, but I agree there’s a sense of a moment around the recent crop — a recognition that the AIDS narrative is out of date and something new needs working through.
In a panel discussion talk at the Emerging Writers Festival, Dion described the way these televisual events function as cultural handles on the phenomenon of AIDS for those who live at some considerable remove from it. He’d mention at a barbecue writing his PhD on AIDS and barebacking and people would ask “Oh, have you seen ______?”
This made Dion the perfect person to host another discussion, provocatively titled “AIDS is Dead; Long Live HIV!” at the Melbourne Writers’ Festival, featuring Elizabeth Pisani, author of The Wisdom of Whores and Indonesia Etc and Colin Batrouney, Director of Health Promotion, Policy and Communications at the Victorian AIDS Council.
Dion asked Colin Batrouney what people ask him at barbecues; Batrouney got a good laugh by saying “People put on their compassion face” (he mimics this) “and say, Oh, that must be very hard.”
Elizabeth Pisani said she proposed the session title out of the desire for people to recognise how the reality of HIV has changed. She tells of asking a friend of hers, a Frenchman, on third-line treatments that occasionally interfere with his life, what was the greatest hardship he suffered last year. He thought for a while and said, “Some friends of mine were going skiing and it was the day of my appointment with a doctor, so I had to miss a day of skiing.”
Pisani snarkily imagined an HIV prevention campaign message: “Don’t get HIV or you’ll miss a day of skiing.”
Dion asked Batrouney if he was nostalgic for a time when the prevention message was simpler: “Use a condom every time”. Colin recalled an answer he gave at the Understanding What Works and Why workshop at AIDS2014, noting there has never been some Arcadian moment of the AIDS epidemic when everything was simple; every moment has always been the most complex moment ever.
This remark is right on the money: it nails what’s most pernicious about that heterosexual AIDS nostalgia — the symbolic violence of the wistful imagination of a time when those naughty gay boys were scared straight, frightened by the threat of death into using condoms and forgoing their perversions.
This desire is visible in the support of many conservatives for marriage equality: AIDS as stick, gay marriage as carrot.
As the Social Aspects of the Prevention of AIDS study showed, way back in the early 90s when deaths from AIDS were at their peak, gay men were still having sex without condoms — in the name of intimacy, resistance, survival.
So it was frustrating that the only prevention message that Elizabeth Pisani can imagine is one based on fear.
Pisani spoke favourably of the New York Department of Public Health campaign “It’s never just HIV”, which threatens an audience imagined to be unafraid of HIV with side effects and co-infections. Watch for yourself:
Every time Pisani talked about “a prevention message”, it was about motivating people through fear of negative consequences. If you share that view, it seems a huge problem that the consequences of HIV are now much less serious than they were.
Indeed, Pisani described the role of AIDS service organisations in developing prevention campaigns and promoting awareness of the modern lived experience of HIV as “diametrically opposed”. And she thought the NYDPH campaign was pulled because “poz orgs objected it was stigmatising”.
I can assure you many HIV-negative people voiced strong objections to the New York ad; I was one of them.
It’s pretty fucking fluffy logic to imply, as I heard Pisani doing, that people living with HIV have some conflict of interest when they object to a message targeting HIV-negative people as stigmatising.
HIV-negative people are affected by stigma too.
When a campaign depicts us all as party boys who don’t think about our health — reproducing that ‘naughty boy’ stigma I describe above — there are two options:
- react against the ad and reject the message as well;
- or — believe it.
There’s hard research evidence of people doing option (1) when fear campaigns are too graphic. I’ve argued this effect is likely to apply to messages that provoke shame or reproduce stigma too obviously.
But option (2) is the real worry. It acts against the most crucial variable in health psychology: self-efficacy. It also challenges the idea that gay people might work together — in the bedroom or sauna cubicle, or in organisations and online, to prevent HIV because we care about ourselves and others.
If you’re hosting a writer’s festival, you should definitely try to book Elizabeth Pisani. She is a dream guest. She is funny, gorgeous, she tells a cracking yarn, and yet she is simultaneously infuriating. The ingredients of the perfect twitterstorm.
Her book The Wisdom of Whores displays her ability, as a journalist turned epidemiologist, to tell a yarn that conveys an understanding of some pretty complex concepts. I just loved her description of a night out in a red light district in Indonesia, the chicanery needed to keep fat, corrupt policemen from impounding her blood tests, her canny knowledge of her research assistants and the role a tight pair of jeans can play in recruiting participants. And I especially love and admire how, by the end of the chapter, the reader knows more than they realise about sampling bias in research.
This ability was on display at the forum. And so was its dark side: the way a yarn, a canned tale developed in advance and trotted out on cue, is the opposite of ‘thinking-through’. At the end of a good yarn, all the loose ends are neatly tied up. But that’s not what we needed. At this particular ‘moment’, we need talking through.
In the lovely words of a friend from Zim, with some issues you can tug on a loose thread and the sewing machine falls out. One such issue is Pre-Exposure Prophylaxis — taking HIV meds when you are negative, so that if you’re exposed to the virus, it can’t get a foothold and you’re protected from infection.
Evidence shows it works if you take it everyday. (File under ‘obvious’?) It changes everything, though, to have something to offer gay men who gave up “use a condom everytime” as personally and relationally unsustainable.
When the topic of PrEP came up, Pisani nodded, smiled wrily and told a self-deprecating tale about her own inability to remember to take the pill on time everyday to prevent the life changing consequences of having a baby. She noted that PrEP uses Truvada, which she called a three drug combination that’s commonly used in first-line treatment in the developing world.
Except that’s not Truvada, that’s Atripla.
If gay men were as ‘sloppy’ in her words as she is about the pill, she worried, this could lead to resistant ‘strains’ of HIV developing and circulating in the developed world, putting the global response to HIV at risk.
Except that’s not how HIV resistance works; that’s a bacterial resistance model. (More in a future post on this.)
The problem with a yarn is the way it crystallises the time when first you tell it. Everytime you repeat it — and for an author on a book tour, I’m guessing that happens a lot — you’re taking the audience back in time.
A tale is a TARDIS. Telling tales is time travel.
Quite frankly, Pisani told an audience a bunch of tales that were easy to understand but more or less out of date.
This happens easily when you’re on the fringes of the HIV response: you miss out on the fast-moving central current of prevention science and policy development sweeping away old understandings of treatment and prevention.
Thus the challenge for people working in prevention is to engage with journalists and policy-makers to ‘spin out’ new understandings in formats that non-experts can get their teeth into. My money is on personal narratives and feature journalism for the job; 500 words with a news angle isn’t space enough to challenge anyone’s assumptions.
Personal narratives work too because, as research into mental health stigma shows, it only takes a small amount of personal contact to enable people who consume stigmatising media narratives to ‘triangulate’ them with reality.
A trickier challenge is getting people who see themselves as ‘hard’ scientists (or hard-nosed ex-journalists) to appreciate the ‘soft’ science of community-based health promotion.
For example, to convince them why fear isn’t a useful messaging strategy, or why targeting HIV-negative people’s self-interest and identity might not work as well as more relationally premised messages.
Or, hell, just to understand that ‘stigma’ and ‘community’ are both concepts about emergent causes and the inability to provide a pat one-sentence definition doesn’t make them fluffy and useless.
“We need to talk about fucking and getting high” is a great line, but prevention was never that simple.
Edit: if you’d like to read more about stigma, I have an article about the technical challenges of defining and measuring HIV stigma in this week’s Eureka Street, the Jesuit Publications e-journal of current affairs, social justice and social policy.
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