“Just chatting,” I said. ”You must be HIV-positive,” he said.
Boy, that escalated quickly! That really got out of hand!
When total strangers ask for my HIV status, I’m reluctant to say. It’s not appropriate to ask such a personal question in advance of trust developing between us.
Sometimes that leads to people assuming I’m HIV-positive. If that’s a problem for them, then I’ll discuss that with them. I’m not just going to correct the assumption and let stigma, the hidden major premise, go unquestioned.
However, he wasn’t even asking. Look how fast he leapt to the conclusion “U have HIV+”.
At first that made me LOL — I can think of other reasons I might not want to meet you, champ.
But what happened next is even more disturbing:
- He threatened me with reporting me to the police. (You can imagine how well that went for him.)
- He talked about wanting to piss in my mouth. I said I don’t have sex with fools, and he got very upset at the implication that pissing can be a sexual activity.
- He screencapped my photo, cropped it and added “HIV” in scarlet letters over my face.
- Then he blocked my profile, and I assume his profile now displays that photo.
He also gave me permission to display his photo and use our discussion as a case study on this blog. I’m not going to show the photo, as I have no way to verify it’s not a photo he stole from someone else. Before he blocked me, I reported his profile to the app network operators, Jackd.mobi, and I followed this up with an e-mail to them.
My privilege allows me to just brush this episode off, but not everyone can. Some people living with HIV — those who are not public about their status — have to worry about this shit every time they go online.
* * * * *
A lot of social psychology writing about HIV stigma features a statement that goes something like this: ”Stigma can cause HIV-positive people to fear sexual rejection if they disclose their status to sexual partners. This can lead to misunderstandings around serostatus and increased risk of sexual transmission.”
That statement drives me nuts, because sexual rejection is the best case scenario PLHIV have to worry about.
The worst case scenario is total loss of control over who knows your status — as the interaction above demonstrates. In my own community, I’ve seen people gossip about HIV status, create fake profiles for others saying ‘I have HIV and I’m a slut’, and spew abuse in chatrooms.
This is not some rare occurrence, either: many people living with HIV report it has happened to them at least once and to many it has happened repeatedly.
The decision to overlook this issue and explain non-disclosure as fear of lost sexual opportunities represents a gross moral failure. It assumes PLHIV calculate only the expected utility of disclosure (the cost/benefit or loss/gain ratio) to themselves. It ignores their personal ethics and community norms that balance prevention of harm and autonomy. It implicitly strengthens a stereotype of people living with HIV as being selfish, irresponsible, amoral and dangerous to others.
* * * * *
As a practitioner (not a researcher) you don’t have the luxury of purity. I read epidemiology for breakfast, health promotion on the bus to work, social psychology at morning tea, psychoanalytic theory at lunch time, neuropsychology with my afternoon cupcake, cultural studies on the ride home, and philosophy after dinner.
Each tradition offers partial perspectives and you can’t be picky. You become a ‘poacher’, to use Henry Jenkins’ memorable phrase. It is swift and dirty work, done on the run to get the job done, and I often think to myself, ‘If ____ ever reads this, I’ll be mortified.’ It makes academic conferences a fraught experience.
But that is more or less exactly how you have to think and write to get a handle on stigma. It’s a complex, multi-level process that crosses disciplinary bounds.
I am indebted to Kane Race for putting me onto John Law’s 2005 book After Method: Mess in Social Science Research. Law’s analytic notion of the ‘sheaf’ or ‘bundle’ is apposite, given the quite separate traditions that contribute to our understanding of stigma. For example, ‘the stigma bundle’ binds together:
- Something individuals practice and experience in social interactions (like the one above);
- Primal affects like shame, disgust and guilt, which have social correlates in disconnection, distancing and judgment;
- Moral experience and intuition;
- Social processes such as labelling and stereotyping;
- Social structuration into groups and cognitive ‘us and them’ divisions;
- Maintenance and normalisation of unjust social orderings;
- Separate processes of associative and deliberative cognition.
As Laws puts it, different accounts (social, critical, structural, individual) offer ‘partial truths’, and this is certainly true of the skeins in the stigma bundle. The mantra for ‘hard’ social science, ‘if it can’t be measured, it doesn’t exist’, leads, as I have shown above, to moral, empirical and imaginative failure in efforts to grasp how stigma functions. By the same token, however, critical theorisations of stigma’s role in social structuration often overlook what anthropologists Yang and Kleinman call the ‘moral experience’ of stigma.
This is a big oversight. Whereas a post-modern critique emphasises multiplicity and partiality of identities, Liamputtong’s research into how women living with HIV in Thailand experience HIV stigma emphasises the close relationship between primary affects of disgust/shame, singular self-identity, and social distancing and disconnection. The phrase her respondents use, rang kyat, translates (poorly) as ‘be disgusted at/by someone’. In this light, Goffman’s evocative phrase ‘spoiled identity’ strikes pretty close to the mark.
* * * * *
In my earlier writing on stigma for AFAO and HIV Australia, I was thinking through a few points I’d like to revisit here:
- Stigma as a distributed, decentralised form of social quarantine, practiced by individuals as vigilantes;
- Stigma as a cognitive strategy to manage strong emotions, including those provoked by HIV;
- Attitudes can change through deliberation (Petty & Cacioppo, 1986) but strong emotions load the dice in favour of fast, associative thinking (Kahneman, 2012).
My thinking on these three things didn’t come from the literature review — it came from a long personal experience using gay chat sites and apps. This conceptualisation of stigma interweaves the social and the individual, agent and structure, and culture and cognition. It was clearly on display in the interaction I screen-captured at the start of this post. Let me highlight a few ‘tell-tale’ aspects about that interaction:
- He was a n00b. Although 27, he was shocked and angered to learn that some people incorporate piss into their sexual play. I am not personally into it, but it’s ‘the darker shade of vanilla’ in the gay sexual repertoire these days.
- He couldn’t ‘regulate his emotions’ (as they say). He asked ‘Why just chatting’, I stonewalled his question (‘Because.’), he got annoyed and this led to rapid associative thinking: the incredible leap he made from ‘just chatting’ to ‘reasons you don’t want to say why you’re not here for sex’ to ‘U must have HIV+’.
- Anger created a positive feedback loop leading to further rapid conclusions and more anger — indeed outrage. In his thought process, positive equals ‘looking to spread HIV’, equals ‘the law will be on my side’, equals ‘I am entitled to harass this person until he flees this environment’, and there’s your effective social quarantine.
- His response to disgust was to quite literally want to piss on it, showing the nexus between disgust, shame, and dirt (as ‘matter out of place’, Douglas, 1966).
In my ‘Solutions to Stigma‘ article I talked about the slow, deliberate process of attitude change that many HIV-negative men undergo to overcome their fear of HIV and adopt non-stigmatising views of people living with it. Is that a solution for this guy? Not a chance. He’s never going to be able to overcome those sudden, strong emotions.
Ironically, as a Sigma Research study by Cathy Dodds and colleagues suggests, this puts him at increased risk of acquiring HIV himself, because it will impede his ability to learn about safe sex or get tested. In different studies, about 10 per cent of people have taken this ‘hard core anti’ stance. It is clearly unreasonable, but the problem is that it’s common.
With people like this, you can’t change their minds, you can only constrain their behaviour.
This shows the importance of gay chat sites and app networks like Manhunt, Recon, Grindr, Jack’d, etc, having (1) clear policy against disclosing a third party’s HIV status and (2) fast and effective complaint and takedown procedures. This is a simple, practical step we can take to make online spaces safer for people living positive.
You can take action
I’ll be contributing a summary of this experience to a punchy new campaign by Living Positive Victoria, titled ENUF Stigma. Visit the site, contribute your story, sign the pledge. Let’s show our community and the world that we stand united against HIV stigma.