I’ve been interested in shame and stigma for a long time, so I was looking forward to last night’s Midwinta discussion panel on ‘Naming, Shaming and Blaming on Social Media’ at Hares and Hyenas. The convener was Lana Woolf and the panelists included commentator Clementine Ford, performer and thought-provoker Lauren Stardust, and my colleague and friend, Natalie Hendry, whose PhD research looks at how young people with mental health conditions use social media spaces.
I am loving this post by Alice Welbourn on the 50.50 blog at openDemocracy.
Some UN documents, such as the 2013 WHO HIV treatment Guidelines, seek for us to “achieve viral suppression” and if we don’t, health staff – even some male activists with HIV – brand us as “defaulters”, “failures” “wasting resources” and worse, with their targets and goals unmet. Susan Sontag wrote of this “blame the victim” mode long ago and nothing has changed. Even the phrase “lost to follow up” and “treatment-naïve patients” also make us sound somehow – well – naïve, careless and thoughtless, as if there might not be key intentional reasons for our “failure” to return to a clinic. In a recent trial in South Africa, where it was discovered that young women participants had not in fact made use of a tablet and gel that were being trialed when they said they had, they were deemed by the researchers to have ruined the trial by “lying”. As Professor Ida Susser explains: “when a study fails, we must be careful not to imply that the subjects are at fault. My analysis of the study suggests, rather, that research design was to blame.”
I have a piece titled ‘Love and the Other’ in the new edition (#26) of The Lifted Brow, reviewing the film Lilting and the questions it raises around the ethics of being the White partner in a gay relationship with an Asian man. From the piece:
The film opens in the aftermath of Kai’s death. As it plays out, we see that scene three times, differently inflected each time. We meet Kai in Richard’s memory as well, and it becomes apparent these are not simple flashbacks: there is imagination and longing in the mix.
Knowing that Junn speaks no English and learning she has a suitor, Richard organises to visit with an interpreter, “To help them understand each other.” In so doing, he reveals himself to Junn’s questions – why are you here? – and must decide how much to tell her about his relationship with her only son.
In the piece I review my own history of relationships with Asian men, and why I identify as a racist person with anti-racist political commitments:
Thinking back to the poor little arsehole that was my late teen self, I had bought into the Hollywood notion that a non-white partner could help me ‘get in touch’ with all the things white people believe they have lost since the Industrial Revolution, including: sex, embodiment, eating and cooking food, rhythm, dancing, style, spirituality, emotionality, family, community, and connection with the land.
It would be a lie to say I learned over time how to be non-racist; it would be more accurate to say that, as I learned over the years how to better manage my ego and emotions, my espoused anti-racism became less bullshit.
The Brow has only been out a few days and I’ve already been asked about the point I’m making here.
I’ve had various barnies on twitter with people who asserted non-racist identity while at the same time espousing either racist views or support for policies that assert and reproduce value hierarchies based on race.
Reflecting on my absolute confidence as a young gay man that I was ‘one of the good ones’, I have come to acknowledge that I was brought up racist, I was educated racist, I live in a racist society, I am a white person from a colonial heritage (Dutch) and, with all that in mind, it would be ridiculous to claim that I am not racist.
I see that acknowledgment as consistent with my anti-racist politics: it’s a necessary first step towards identifying the unconscious attitudes and thoughtless practices that, via my own behaviour, reproduce racism.
And I’ve seen anti-racist organisations where all their non-white staff are casuals, where non-white staff are discouraged from applying for management roles because ‘your English isn’t good enough’, where white staff with anti-racist politics spoke louder and more slowly to non-white staff who spoke English as a first language.
If we weren’t so desperate to other racists as bad, ignorant people, we’d be in a better place to reflect on our own contribution to racist structures in our personal relationships and workplace life. Without this, our efforts to change the behaviour of those other people are inherently unconvincing.
- If you do happen to get a copy of the Brow #26 — it’s a lovely edition! — you may find my contribution reads a bit disjointedly. There were originally rows of asterisks indicating the section breaks, but they have disappeared. Feel free to imagine them wherever it would help my writing to make sense. Or you could be like my flatmate, recalling Vonnegut in Slaughterhouse Five, and imagine them as rows of little arseholes. This would be thematically consistent.
- My thinking around this issue owes a debt to Australian and New Zealand writers and thinkers on Indigenous health and cultural safety, particularly Prof Linda Tuhiwai Smith, A/Prof Dennis McDermott, Siv Parker, Luke Pearson, and Peter Waples-Crowe, as well as non-Indigenous teachers like Dave Sjoberg.
Reflections from tonight’s VAC forum on Navigating Sexuality, Gender, Culture and Religion, moderated by Maria Pallotta-Chiarolli (Deakin University) with speakers Gilbert Caluya, Monique Hameed, Lia Incognita, Raina Peterson, Nur Wasame and Shinen Wong.
As I walked in the door, convenor Budi Sudarto sighed theatrically, ‘it’s the same old suspects’. Way to make a guy feel welcome! But in fact it wasn’t: pretty soon the room was packed, with an audience of mostly ‘community people’ — not the usual crowd of academics and project workers. Also, the panel included queer speakers from African and Muslim perspectives and counting the moderator it was more than half women. Monique Hameed noted her experience in ‘coming out’ was marked by a lack of ‘brown and gay’ role models. This panel was significantly more inclusive than similar events I helped organise about five years ago, and Monique’s remarks underscore the importance of that — so full credit to the organisers and the panellists for that.
These are just some fragmentary reflections from moments that resonated with me personally — any errors are on me (please feel free to point them out or add your thoughts in the comments).
- Maria asked if queer is a Western concept.
- Shinen traced the imaginary geography of Australia’s cultural identification — calling ourselves ‘Western’ traces a lineage back to Europe.
- Raina described looking to the historical record of Indian culture for affirmation in images and texts about same gender desire.
- Gilbert pointed out how if we see queer as a moment of breaking away from Gay liberation, we can forget how much the earlier homophile movements looked for validation in anthropological records of same gender desire in other cultures.
- Lia noted the risk of erasure when we look back and claim historical people and practices as queer.
- Shinen contrasted the Western secular atheist notion of history as progressive with the cyclical conceptions of time prevalent in Buddhist thinking, and noted how the conditions we establish today in the name of justice will be future conditions of repression
- Maria asked the panel about the politics of coming out and what it feels like.
- Monique noted that ‘mainstream services targeting LGBTIQ people often focus on coming out as a defining moment after which you get to experience being truly gay and true to yourself.’ (quotes to indicate close to verbatim quotation)
- Nur noted that ‘coming out’ is very, very serious in his community: ‘it’s your life on the line’. But he sees it as important for the young people — not just young gay Muslims but to reach non-gay Muslims as well.
- Lia described her concern with overly literal responses to the problem of invisibility — simply getting seen more is not an answer to invisibility of particular intersections of identity, such as femme lesbians or black women in fashion photography; it just leads to a proliferation of the same visual stereotypes encoded in problematic ways.
- For Lia greater visibility was not an answer to the question of how to find and how to recognise each other.
- Gilbert noted one of the most challenging things for his partner, a white man, was having to think about race when he’d never had to before being partnered for ten years with another white man.
- Maria asked the panel whether privileged people have a responsibility to help — but also how they can do that without taking over or appropriating.
- Raina differentiated anti-racist discourse, with its focus on structural racism, and the Australian multicultural identity of ‘we all have differences’. She noted how ethnic communities adopt a low profile as they settle, trying to avoid attracting abuse. She suggested, and this is my takehome for the night, maybe white people can do that, for a change: ‘try to be a bit quiet’. She said she was tired of being a focus group participant for white people making their career in multicultural policy.
- Lia recounted how she’s done a few of these forums lately and often there’s a question from the audience, ‘what can white people do?’ She suggested, you know, put a bit of effort into it and find the answer for yourself, but also noted that under oppressive structural conditions there’s no ‘better’ course of action: all the available paths are marked by those unequal power relations.
- Monique described majority-white mainstream organisations wanting access to her project’s participants; funding arrangements that anticipate partnerships that are enacted in inequitable ways; and trying to engage with staff who have no lived experience of what’s at stake for ethnic queer people: you know, ‘maybe it means you’re not the right person for the role.’
- An audience question made a really great point, that ‘diversity isn’t a substitute for justice’.
There was the usual smattering of audience questions, including some from people who missed Raina’s takehome point, and the event closed. If you want to be kept informed of upcoming events, like the Australian GLBTIQ Multicultural Council on Facebook!
Feel free to comment but remember, if you find this stuff ‘really interesting‘, it probably means you’re not a member of the group who have the most at stake with this issue, so please frame your response to show respect for that.
The clip is five minutes but it doesn’t feel long. VAC has a campaign targeting the Health Minister, Sussan Ley, to support approval of PrEP for prescription and PBS funding in Australia. In this video it finds the most powerful possible voices: people already living with HIV. Watch and share and sign the damn petition.
In the discourse of treatment as prevention (TasP) we’re seeing an initiative to rearticulate the historically separate traditions of HIV treatment and prevention as a single system.
Its starting point is the research finding that people with HIV who have suppressed viral load and no STI co-infection are ‘virtually uninfectious’ to HIV-negative partners, even when condoms are not used.
The word ‘virtual’ is interesting here. The finding itself is virtual; at first, it was just a fact that can be repeated in discourse. It didn’t change anything; it describes a situation that already existed.
It will take a concerted effort to bring about changes that will make this fact material, in other words, to see it concretely reflected in the work of prevention and the everyday lives of people living with and at risk of HIV infection.
My current work looks at prevention as an emergent effect of patterns among all those everyday encounters and interactions: in other words, a complex systems perspective.
The systems perspective suggests there are many different paths the rearticulation of systems for treatment and/as prevention could take. Some of them lead in quite problematic directions, while others may reveal productive and generative possibilities.
Of course, this being a blog about stigma and public health strategy, the primary axis I’m thinking of is HIV stigma and the ‘serodivide’ between positive and negative people in different populations.
Articulation is a useful perspective for thinking through apparent dichotomies.
At the AIDS2014 conference I took part in a video interview by Rex Pilgrim from ACT UP Queensland, offering a critical public health slant on the potentially coercive application of public health power, which many see as a preferable and gentler alternative to crimino-legal responses to HIV transmission. I don’t actually see that as a choice between alternatives; I see the threat of criminal prosecution as articulated with public health power, as an intensifier of its implied coercive potential.
However, in one of its many different formulations, articulation was seen as the way people and institutions with power take up the concerns of the working class and use them to re-express the agenda of the powerful.
That portrait of power is a bit crude, though. I did a workshop last week on the systems perspective in which I argued that change ‘management’ is challenging because the status quo is actively and continually being produced by social systems, and this resonated for one stakeholder as a ‘conspiracy theory’ about a powerful Them.
On a complex adaptive systems (Holland 1995; Ostrom 1999) perspective, however, agency itself might be an emergent property of aggregate patterns among interactions on lower levels of social organisation.
That’s an exciting possibility; for instance, it provides an empirically plausible account of the ‘microfoundations‘ (Dan Little’s term) of the Ottawa Charter philosophy of engaging with communities as having agency as communities.
Research by Holland, Kingdon (1984) and more recently the European social theorist Klaus Eder (1999) has examined the way more or less random and recombinatory events in social systems can contribute to social learning at a local level and, when the lessons learned are picked up and transmitted by the nature of those systems, to wide-scale social transformation.
Exactly these processes have been observed in the work of Stephen Lansing on the Subak system for water allocation on the fragile farming ecosystem of Mount Agung in Bali, which originated the world’s oldest and longest functioning democratic culture to facilitate that learning process.
Elinor Ostrom won the Nobel Prize in Economics for developing these findings into a general model of how self-organising human collectives manage to avoid ‘tragedies of the commons’, the bogeyman of classical economics that underpins so many of its arguments in favour of market based ‘cap and trade’ or quota systems.
A key idea in this work is that social units within complex adaptive systems observe the outcomes of new rule combinations in neighbouring terrain and ‘borrow’ the ones that are seen to work.
I’d argue this model applies to policy innovation(s) as well, generally and specifically. So I was deeply concerned this morning to read this article from St Louis Today, titled ‘2,000 St Louisans are HIV Positive but not taking their medications‘. It recombines or in other words weaves together strands from an astonishing variety of different memes about HIV prevention.
In particular, it takes the ‘treatment cascade’ concept, created as a complex matrix of targets on the path towards population-level treatment as prevention, and it translates it into an object of media concern, a well-worn step on the pathway towards legislative responses that seek to coerce compliance among people reconfigured as a risk to public health.
Along the way, it treats medical doctors as experts in the social science of prevention. Many are, but they generally don’t repeat stereotyped ideas such as ‘young people aren’t scared enough’ and ‘African-American men have an element of denial in their sexuality’ (as opposed to the white middle-class ‘masc gay btm’ who just hit on me on Grindr).
The really key problem is the way it translates treatment as prevention into an idea with primarily individual behavioural implications, setting up concern in the community about whether PLHIV are compliant or ‘a risk to others’.
That’s a deeply concerning pathway for the rearticulation of treatment and/as prevention to take.
The countries with the most successful HIV prevention responses are those that enabled communities to educate, resource and support their own people to protect themselves and their partners — what I called community-based prevention responses in my contribution to a 2012 NAPWHA Monograph on criminalisation.
The countries with the least successful HIV prevention responses are those that created punitive laws as ‘incentives’ within that model of classical individual rational choice theory economics that can’t place any trust in altruism.
So far, this discussion has been pretty theoretical, so I want to finish by highlighting two recent attempts to make this stuff concrete and practical. One was posted today by a friend of mine, Ted Kerr, former convenor of Visual AIDS in New York. It shows the educational approach that is necessary when public policy does not enable community-based responses.
The title bookends the early resource produced by Callen and Berkowitz for gay men, ‘How to have sex in an epidemic: one approach‘, a resource which got some things wrong but most things right, and effectively invented condoms as safe sex, long before researchers were ready to say with confidence that HIV was a virus and sexually transmitted.
It was an act of recombination whose fitness was selected for by reality. As a colleague of mine, Garrett Prestage, has said, people in the gay community tried it out and they knew it worked when they got tested.
A second highlight is a new resource for people living with HIV published by Living Positive Victoria in partnership with the Victorian AIDS Council, called ‘Talking with your negative friends and partners about PrEP‘.
It would be problematic if PrEP were only ever marketed to HIV-negative men as a strategy to protect them from PLHIV, so the resource encourages people using or considering PrEP to learn from people living with HIV about taking meds, trusting their GP, dealing with stigma.
Importantly, the resource reflects a different path for the articulation of treatment and/as prevention — integrating new knowledge about the efficacy of HIV medications while strengthening and adding value to the ongoing encounters, interactions and relationships that constitute community among people living with and at risk of HIV in the absence of a vaccine or cure.
I’ve been banging on for a while about the way hackneyed story angles and news ‘hooks’ lead to lousy media coverage of emerging issues in HIV prevention. In this post I want to acknowledge some of the really good writing that has happened in the past few months, all of it in the gay community press.
Three recent pieces
The taboo of barebacking by Rachel Cook
HIV/AIDS has catapulted gay male culture through so many extremes in just a few decades that it is understandable there are those who find the idea that condomless sex could now be permissible confronting. Especially, for some men who for the majority of their sexual lives have been told the only way to protect against HIV transmission is via the use of condoms. Remembering also it was not that long ago that this community was not just decimated by the virus but brutally punished by broader society as well. For a significant proportion of our community, that’s a lot to wade through. So are gay men ready to accept that condomless sex is a relatively safe option in the right context?
This piece raises issues that get excluded by overly emotional, sentimental, or moralistic responses to barebacking, and in so doing it enlarges the debate without taking a position on it. The author, MCV editor Rachel Cook, interviewed exactly the right people for the piece — Kane Race, Nic Holas and Brent Allan — to give a grounded and nuanced picture of the issue.
The new gay sex by Benjamin Riley
In a challenging and controversial essay on PrEP for New York magazine, writer Tim Murphy documented a community divided. On one hand, men who see this as a chance to, for the first time in their lives, have “sex without fear”. On the other, men for whom PrEP connotes new fears — a rise in condomless sex leading to a rise in other STIs, negative perceptions from the straight community, slavery to the pharmaceutical industry, even disrespect for a generation of the dead. While the reality is of course more complex, the extreme views of those living on the poles of the debate have shaped the conversation.
This article is SO GREAT. I think it highlights the positives in the Star Observer’s shift to a monthly format — it loosens the expectation that a weekly rag will feature short articles with a news hook, which is all too often ‘experts and community members disagree over x’. The feature length format allows Riley to acknowledge the different views on either side of the pro/anti PrEP debate, while walking readers up to the idea that the reality of PrEP is less black and white. Riley won the 2014 Media Award at the Victorian AIDS Council AGM and it was really well deserved.
Twenty-five / sixty by Benjamin Riley
Dennis [Altman, interviewed for the piece] argues young gay men today are engaging with the past because they represent a “third generation” — the first gay men with the space to look back. After the activists of the 70s, an entire generation came out during the worst of the AIDS crisis in the 80s and early 90s, defining the way they see themselves.
He adds that for the first time we are seeing a cohort of young gay men who escaped much of the damage of those previous generations, and it could serve as a painful reminder of that damage.
“If we keep saying that social stigma and discrimination causes people to be damaged… then at some point we have to accept that the people who are telling everybody else that they’re damaged may also be damaged themselves,” he says.
“We have to be willing to think, well okay, how’s this affected me, and how much of this am I carrying around?”
This piece could have been such a train wreck, simply repeating tired old generational stereotypes, but as this quote illustrates, Riley got his interviewees to reflect on their own perspectives on the AIDS crisis and our contemporary post-AIDS reality. To find Dennis Altman being critical is no great surprise, but here he is speaking with compassionate insight about his peers, and instead of calling younger gay men ignorant, he acknowledges they have a historical opportunity to look back… just brilliant.
All three of these pieces come from the gay community media. It is harder to find articles worth celebrating in the mainstream media. You might think ‘well we’d hope the gay press would do better’, but, to be honest, the past decade of gay community press coverage of HIV prevention didn’t give much cause for that hope.
In my time working in community prevention, we’d get six hundred words for a launch article we wrote ourselves in exchange for placing an ad buy with a gay rag, and if we were lucky, the editor — invariably a gay man — wouldn’t come out with an editorial excoriating our campaign for acknowledging that unprotected sex happens.
So what’s changed? Well, Rachel Cook is now the editor of MCV. In that last decade, it felt to me like lesbian journalists consistently did a better job than gay men at covering what was new in HIV prevention, perhaps because they weren’t personally bound by a culture of cognitive dissonance around sex without condoms.
Second, I’m terrible at guessing ages but I suspect Benjamin Riley is a member of what Altman calls that ‘third generation’ with the space to look back on HIV without the traumatic intrusion of experiences of friends and loved ones dying — the source of the emotional investment that made the bareback backlash so powerful and dangerous.
In my next post I want to reflect on a story I participated in, albeit peripherally, as guest tweeter for a Background Briefing episode on, wait for it, ‘the controversy between medical experts and the gay community around PrEP’. In the meantime, please feel free to share your thoughts and responses in the comments below, I’d love to hear from you.