In 2014 I was asked to contribute a piece from an HIV-negative perspective to a monograph on the positive voice, published in the lead-up to the International AIDS Conference in Melbourne. It was written for an audience of HIV sector insiders — practitioners, researchers and policy people — from a ‘pracademic’ perspective, drawing on my experience in practice and my training in cultural studies.
After much back and forth, the editor said it was ~problematic~ and he would only publish if I took significant chunks out, so I withdrew it. Recently the language of HIV neutrality has come back around, and there have been resurgent concerns about serodivision, so the issues raised in this piece remain unfortunately relevant. So here it is. As always, I welcome your thoughts and feedback in the comments.
A personal journey
So far I’m still HIV-negative, ten years since I began working in HIV. It has been on my radar for longer, ever since one of my first partners disclosed he was living with HIV, after we broke up. I didn’t panic then, but the first time someone disclosed their status to me before a casual encounter, I did: the oncoming rush of emotion meant I couldn’t go ahead with sex, and I projected my sense of failure onto him.
My shame afterwards was a wake-up call. I still feel strong emotions when someone discloses to me — not fear of infection, but feeling their vulnerability in that moment. But like a lot of negative men, in my twenties and thirties I undertook a slow and deliberate process of learning how to manage those emotions and respond to disclosure in a skilled way that did not derail the sexual or romantic potential of the encounter.
In my work I’ve had a number of opportunities to contribute to how our sector thinks about and responds to HIV stigma. As Campaign Coordinator at Living Positive Victoria in 2008 I wrote a discussion paper for NAPWHA and a literature review for AFAO on tackling stigma. I write a blog called Bad Blood on stigma and public health and I’m preparing to start a postgrad research project on the same topic.
One thing I wish more people understood about stigma is that it’s not just being mean to people with HIV. Although that certainly happens, it’s better understood as individual discrimination. Stigma is the social process that makes discrimination and structural inequities seem natural and appropriate (Parker & Aggleton, 2003). In my definition, stigma is the cultural legislation that patterns and authorises acts of discrimination.
Stigma is sustained by cultural processes such as prevention campaigns promoting HIV status as an identity category, and media coverage that reproduces moralistic stereotypes of risk behaviour amongst both HIV-positive and negative people. It is not simply the aggregate of individual attitudes and discriminatory behaviours, and trying to tackle stigma by telling individuals ‘stop doing that!’ is bound to fail.
Launched on social media around 2012, the Stigma Project invited people to ‘live HIV-neutral’ (see image above). [Note: this is not the same thing as the HIV status neutral model of care.] The image proposes HIV-neutral as an alternative identity, or what I would call a subject position for HIV-negative people. It says ‘it’s time to change how we see, think and speak HIV.’
In using the term subject position, I am not just thinking of identity. It’s Foucaultian jargon, denoting a speaking position within a discourse, which in this case also contains ethical principles, community politics and ideas about citizenship. It is a package of meanings and obligations much bigger than antibody status.
The “I am HIV-neutral” poster from The Stigma Project (2012) lists some values embedded in this new subject position, including the most important one – “still learning.” Stigma is deeply embedded and dynamic, changing all the time, so we need to expect and accept that we are going to discover we still hold stigmatising beliefs. HIV stigma doesn’t disappear overnight for people diagnosed with HIV, nor does it for HIV-negative people, either.
I don’t love the language of neutrality, though. It brings to mind Switzerland during the Holocaust. It suggests equanimity — ‘I don’t care about HIV status.’ I want HIV-negative people to take up a more passionate and committed, ethically aware, and politically active stance. Something like ‘ethical negativity.’ Ethical in the sense described by José Esteban Muñoz: a practice of selfhood for others — that makes safe space for people living positive and calls HIV negatives to action against stigma.
In the following sections, I consider how developing a practice of ethical negativity could contribute to a revitalisation of ‘meaningful involvement’ and provide an opportunity for rethinking HIV prevention. Finally, I return to its potential to challenge serodivision in communities living with HIV.
Meaningful involvement of people with/out HIV
In the rhetoric of the Australian HIV response, we make a big deal about community involvement — but we seem to do best at involving people who already have significant privilege and political agency. I got my first job in HIV prevention after writing about sexual racism for my local AIDS Council, and a concern with racial justice has always inflected my involvement in the HIV response.
From 2009-12, as the Senior Project Worker at the Multicultural Health and Support Service, I sought to transfer some lessons learned in the HIV response to our work with culturally diverse communities in the nascent response to hepatitis B. The main one was the value of involving people living with the virus and members of affected communities at every stage and every level of the response.
As someone who entered the HIV sector in the third decade of the epidemic, it was an opportunity to review the history of the Denver Principles, GIPA, MIPA and the National Strategy principle of involvement of affected communities and to think about their continued relevance in a changed epidemic and social context.
We conducted intersectoral consultation to understand what these principles had to offer the emerging hepatitis B response. Many key informants understood involvement as ‘consumer representation’ providing direct and immediate access to the lived experience of the illness in policy and planning committees – but they questioned how a single person could represent diversity of people living with BBV.
Indeed, as we’ve seen in the HIV response, it takes a particular kind of skill to perform effectively in this role. Once again, it is not just about status: the subject position calls for skills in personal and political performance. A skilled person can contribute enormously, while the wrong person for the role can disrupt and constrain the process and damage the credibility of positive leadership as a practiced form.
The hepatitis B consultation report (unpublished) reflected on the different community and professional perspectives that inform our thinking on policy and planning. It saw the principal value of involvement of affected communities in the cognitive and cultural diversity it creates, making it harder for a single perspective to hold sway, and resulting in policy and practice with increased real-world reach and relevance.
An example can be found in the difference between health professionals and bicultural community educators in how they understand health literacy. Health professionals understood it very literally in terms of translating simple messages from a clinical authority into languages other than English.
Bicultural educators, on the other hand, understood the task as elaborating the complexities of biomedical information into concrete and culturally specific practices of care for self and others – a key translational process in what Hurley (2001) has called the cultures of care that were informed by PLHIV organisations in the late 90s.
Rethinking HIV prevention
My sense is that we need to renew those cultures of care, as treatment as prevention (TAP) and pre-exposure prophylaxis (PrEP) demand that HIV-negative men understand and engage with the complexities of antiretroviral treatment agents as they negotiate sex and relationships with serodiscordant partners.
They will need to understand partially protective risk reduction and learn how adherence, blood levels and resistance work, as well as the subtleties of choreographing desire and disclosure and drugs of different kinds.
[Note: we now know that PrEP and U=U are not ‘partially’ protective — this was written before the iPrEX sub-analysis of adherent participants came up with a 90%+ estimate of efficacy. However, those estimates by definition exclude PrEP outcomes among people who struggle with adherence. People living with HIV can teach them a lot about adherence.]
In this area, positive organisations have an advantage over AIDS councils, which have traditionally held the funding mandate for prevention, but have frequently presented complexity as something gay men can’t handle, and as a reason to keep on using condoms, as if simplicity matters more than pleasure/intimacy.
[Note: at the time of writing, only the AIDS Council of New South Wales acknowledged UVL, and the NSW HIV Strategy saw PrEP as a strategy for a limited number of very high risk MSM. Even now, HIV organisations seem unwilling to promote event-based PrEP as an equally effective and practically feasible alternative to ‘simpler’ daily dosing.]
Having different organisations with different brands and different reach into key population segments – such as bareback, party and adventurous networks – can create strategic flexibility for funders and policy-makers. It can allow the coordination of layered messages that could otherwise pull against each other – such as a mainstream condom message and a targeted risk reduction message.
AIDS councils have over time learned to include positive voices in the planning, implementation and evaluation of campaigns and services. However, it remains uncommon for positive organisations to explicitly invite HIV-negative perspectives on their work, even as changes in Australia’s funded service landscape mean some positive organisations are now delivering services for negative people, such as rapid testing.
HIV-negative voices should inform the role PLHIV organisations take up in sustaining cultures of care around biomedical strategies in HIV prevention. It is important to be tough-minded on the need for meaningful involvement to cut both ways: otherwise, ‘nothing about us without us’ sounds less like a principle and more like a tactic.
Reconceiving the HIV-negative subject position
In the literature on stigma it is well evidenced that public health initiatives can introduce and reinforce new forms of stigma. For example, the roll-out of ART in Tanzania saw popular discourse shift from sympathy towards ‘victims’ of HIV/AIDS to one emphasising blame and fear of ‘hidden’ positive status (Roura et al, 2008).
Similarly, campaigns that address one HIV status in particular can create or strengthen a subject position for people targeted by the campaign. Many campaigns have done this deliberately: the American ‘HIV stops with me’ campaign promotes a subject position premised on personal responsibility, while in its own words the Australian ‘Staying Negative’ campaign promotes the aspirational value of HIV negativity.
My point here is that the HIV-negative subject position is going to be reinforced by interventions targeting this population with messages around PrEP and TAsP. This could go in quite different directions: one emphasising new similarities between HIV positive and negative experiences and how much HIV-negative men can learn from positives; or one emphasising how biomedical technology enables HIV avoidance.
Gay community life is already splitting along these lines (Smit et al 2012). Seroconverter interviews suggest a segment of HIV-negative men are blurring the lines between negative and positive status by entering mixed status sexual networks and spaces and acknowledging, tacitly or more explicitly, that seroconverting may be inevitable (Slavin & Pitts, 2005).
Even when condoms are not used, however, the patterning of sexual risk-taking in this group indicates a continued desire to stay HIV-negative if possible. This group needs access to rapid testing, at-home testing and PrEP and education on their use from messengers who have not lost credibility due to repetitive condom messaging.
In a larger segment, however, seroconversion is becoming a distant prospect as the experience of positivity is made increasingly private and routine and there is decreased visibility of HIV in public life. In this group, seroconversion is more likely to come as a horrible surprise, influenced in part by out-of-date expectations about treatment side effects and internalised HIV stigma. [Note: this is exactly what happened.]
The subject positions available to both groups described above have blind spots that could benefit from a perspective drawing on HIV-positive lived experience. By including HIV-negative voices in positive action and service delivery, positive organisations have the opportunity to define and shape what an ‘HIV-neutral’ or ethically HIV-negative subject position might look like.
As I found in my time working for and alongside positive leaders and organisations, HIV-negative men have a lot to learn from this perspective. The opportunity is to reject the subject position created for us by discourses of stigma and neoliberalism, and to learn instead the skills required to occupy a speaking and listening position as an HIV-negative participant in a positive-led initiative.
Collaboration of this kind highlights something important: the continued relevance of the political mythology of community in the Australian HIV prevention response. I call it mythology to emphasise there is nothing there in community but what we make and remake of it between us.
In a forthcoming article in Culture, Health and Sexuality on hook-up devices in gay life, Kane Race argues community is “not predicated on social sameness: it is precisely its capacity to emerge among differently situated individuals that is of interest” (Race, ibid). He quotes from David Caron’s book, My Father and I, on Roberto Esposito’s theory of community having three possible meanings: burden, duty or service, and gift (Race, forthcoming; Caron, 2005, p 271; Esposito, 2000).
Caron’s ‘take’ on community combines the elements of duty and gift, and it strikes me this captures what I am calling for in a strengthened HIV-negative subject position: the duty to listen, to be aware of stigma, to accept and learn from the gift – what is offered by participating in community with positive people, organisations, and leadership – an end to HIV avoidance and a long-deferred coming to grips with HIV.
Caron, David (2005) “My Father and I: Jewishness, Queerness, and the Marais” in GLQ: A Journal of Lesbian and Gay Studies 11.2 (2005) 265-282.
Hurley, Michael (2001) Strategic and conceptual issues for community-based, HIV/AIDS treatments media. Melbourne: Australian Research Centre in Sex, Health and Society.
Parker, Richard and Peter Aggleton (2003) “HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action” in Social Science and Medicine 57(1) 13-24.
Race, Kane (forthcoming) “Speculative Pragmatism and Intimate Arrangements: The Operation of Online Hookup Devices in Gay Life” in Culture, Health and Sexuality.
Roura M, M Urassa, J Busza, D Mbata, A Wringe, B Zaba (2008) “Scaling up stigma? The effects of antiretroviral roll-out on stigma and HIV testing. Early evidence from rural Tanzania.” Sexually Transmitted Infections 85(4) 308-12.
Slavin, S., & Pitts, M. K. (2005). The contemporary context of HIV infection in Victoria, Australia. Melbourne, Australia: ARCSHS, La Trobe University.
Smit, P.J. et al., 2012. “HIV-related stigma within communities of gay men: a literature review” in AIDS care, 24(4), pp.405–412.
The Stigma Project (17 Aug 2012) Live HIV Neutral (Facebook page) at < https://www.facebook.com/photo.php?fbid=457086257669857&set=a.480520161993133.114949.336505193061298&type=3&theater> (accessed 19 May 2014).