As part of the ongoing AIDS ACTION NOW! POSTER/virus project, which will continue with a new series of posters in 2012, Alex McClelland of AIDS ACTION NOW! and Mikiki, the artist (in collaboration with Scott Donald) behind the provocative: “I Party, I Bareback, I’m Positive, I’m Responsible” poster, sat down to chat about the HIV community’s response to the project, and examined together what being ‘responsible’ really means for people living with HIV 30 years into the epidemic.
Alex: The driving intention behind the POSTER/virus project was to provoke constructive discussions around some of the complex issues facing the HIV response today. As the co-curator and coordinator of the POSTER/virus project with AIDS ACTION NOW! I wanted us to use these works as a catalyst to promote dialogue on things we are often not allowed to talk about in the HIV response… like living with HIV and AIDS while actively claiming a sexual identity. We realized that this is still very much a challenge. So let’s talk about the initial online and broader cultural reaction within the HIV response to your poster and the project. While overall the project got a lot of praise and did provoke constructive dialogues, there were a number of reactions which were very angry and negative. Also, AIDS Community Care Montreal held a community forum to discuss the Facebook controversy. Can you talk first about your reaction to the reception of your work and our project?
Mikiki: One of the things we saw that was common was the silencing of our voices as those who are from the second wave of people who contracted HIV. Silencing through trumping with past lived experience, but like trumping with trauma. Those responses were informed by people having a really traumatized experience of their lived history as part of the HIV/AIDS epidemic, and this poster really brought up a whole bunch of like really shitty experiences and memories of loss. These experiences and responses are totally legitimate, but it was interesting that after a 30-year span of this disease, seemingly there still cannot be multiple subjectivities of an HIV-positive experience. That in order for them to be heard, we had to be silenced and toe the line of what positive people are supposed to be.
Alex: I agree, it was interesting that the poster, through claiming a very explicit sexual space and sexual identity of empowerment of a HIV-positive sexual life was seen by some as denying the personal lived experience of people who had passed away. As though acknowledging the lived realities of a broad range of positive people today somehow denied all the powerful work of those who have come before us. And then there was also the response from people who were like: “but what will the ‘general public’ think of us” or “what about the young people??”
Mikiki: That was particularly problematic…
Alex: And paternalistic.
Mikiki: That’s one of the things we’ve spoken with each other that was problematic is the: “what will the ‘general public’ say?” or “what will younger queer negative or young poz people think?” As in: if we give them this permission to have sexual agency what will happen? As though we can’t allow people to make their own informed decisions.
As a service provider, this is one of the most troubling conversations and interactions I’ve had with some people who work in HIV. Within this response (which is supposedly grounded in human rights) some service providers feel it is really necessary to withhold specific information until they find a way to “frame it properly”. Yes, I do get the idea of needing to evaluate how specific new pieces of information fit into the existing messaging. But the idea that we would in any way withhold information, especially where it might not just reinforce the work we’re doing is very problematic.*
With this project we’re not trying to undo the history of AIDS activism, we’re not trying to undo the history of prevention. We’re trying to reflect the fact that community knowledge and community practices have been shifting for decades.
Alex: It’s fascinating for me to watch the lack of uptake of new science around Treatment as Prevention and how almost debilitated the HIV prevention response in Canada has been with this news. This response used to be innovative, visionary, and leading in many ways, all because people were reacting out of the desperate, dire urgency due to massive deaths in the community.
But today, the reaction to new science specifically regarding Treatment as Prevention – this paradigm shift in how HIV prevention is conceptualized - has seemingly fallen pretty flat when you look at the work of AIDS Service Organizations. Although, I know that people like you are working on it…
Mikiki: It’s a firewall… but yes, there is some work beginning to take place. Although it is slow.
Alex: It’s a firewall! It was interesting, because people reacting negatively on Facebook to the poster referenced the CATIE, Canadian AIDS Society (CAS) or Public Health Agency of Canada (PHAC) safer sex guidelines. Saying that since these guidelines didn’t include information on Treatment as Prevention, then it was not legitimate knowledge. Like: “only listen to what Public Health is telling us, and don’t listen to anything that hasn’t been triply approved by…”
Mikiki: Prime Minister Harper!
Alex: Hahaha! Treatment as Prevention was the biggest science news in the biggest science journal in the entire world last year. But as a community, we have not developed or even responded with relevant guidelines on how to incorporate the new reality that people living with HIV who are on treatment and have viral suppression do not always need to use condoms. This is very liberating news for our community, but seemingly nothing has yet happened with it.
Mikiki: We’ve been waiting for new CAS guidelines to update for how many years now? They are a widely recognized standard for how to do prevention work and how to talk about prevention and provide an accurate assessment on how to provide information of HIV risk and exposure. But the lack of reaction is not indicative of CAS specifically, it’s indicative of the Canadian HIV response in general, in that we don’t seem to have a proactive awareness of how to do basic KTE (Knowledge Translation and Exchange). There are these big pieces of news that we actually need to apply to messaging for those of us doing front-line work. But it isn’t yet happening.
The response is stymied because people feel as though this new way of talking about HIV prevention (the potential to not use condoms) undermines some basic tenets of how we see positive people, and how Public Health practitioners want to control our sexualities.
Alex: True! The queer community innovated safer sex as a form of self-help and a way to imagine new ways of promoting mutual sexual community accountability. It was developed as a community response, a radical sexual response to a disease that was killing loved ones and friends. Just like Harm Reduction, at first a covert project, which was seen as counter to Public Health practice, but has now ended up being co-opted in this Public Health voice. So today, it seems we can no longer radicalize safer sex messaging - which is how it used to be – because the Public Health voice is the only one that AIDS Service Organizations are now able to communicate in.
This is where the disconnect between the goals of Public Health and the rights of people living HIV are revealed. Public Health is not interested in our rights to health and information (so we can become empowered and informed sexual beings with HIV). Rather, Public Health is aimed at preventing us from transmitting HIV to the “general public”.
Mikiki: The “general public” that we don’t exist within! There is this idea of PHAs as something to be “controlled”, because we have a HIV-positive diagnosis there is this existing empirical evidence of our “misbehaviour”. So you know, we are marked, like the mark of the beast, or potentially a scarlet letter. So Public Health now has its target market (which is us) they have the authority to surveil, monitor, and intervene in our lives. Then Public Health also has the self-granted right to be able to punish as well. Public Health does not have a human rights focus in terms of their mandate and how they operate.
Alex: So lets talk about ‘responsibility’ and ‘irresponsibly’. In your poster, you used the term responsible in a way that I loved, because it was in a sexual context that we have been trained to understand as irresponsible, right? Within contexts of drug use and unprotected sex, things that “responsible” people are not supposed to do. So you intentionally blur the lines of ‘responsibility’ and ‘irresponsibility’ and also force us to question these commonly held ways of talking about risk.
Mikiki: For me, my poster was about identifying a new queer and poz cultural project that’s being undertaken, one that challenges the historical or more common cultural understanding of PHAs as inherently irresponsible. The idea of ‘responsible’ and ‘irresponsible’ as this dichotomy or binary could really use some queering up. It is important to recognize when we get into the lives of other people it’s useful for most of us “rational people” to realize there is a grey area where people actually live within.
Alex: But really, as the Gary Kinsman one of my fav scholars and queer AIDS activists wrote about in 1996, the concepts of responsibility and irresponsibility are used as a tactic of social control and governance for people living with HIV. The “responsible” people living with HIV are the ones who are engaged with ASOs, who volunteer at condom pack stuffing events, who speak publically about their experience as examples of what not to be; who have the stories of sobriety on a panel where everyone claps at the end. It’s the same story: “I was a disorganized person living with HIV and through my engagement with HIV organizations I have now become an organized and responsible person”. Not in any way to disrespect people who live this story, as these stories can be powerful. But this is all part of making us better and more “productive citizens”.
Mikiki: The redemption songs, and only allowable redemption songs. There has to be some public disavowal of the behaviour that you participated in to put yourself at risk. You don’t need to sing that song to me.
Alex: Right! We have this concept of what a “responsible” person with HIV is. We are supposed to be the person with HIV who sings the redemption song, who is employed in an ASO, is a peer researcher, who is the story of ‘Living and Serving’ - serving as a responsibility.
Mikiki: Or as shackles…
Alex: Exactly – ‘Living and Serving’ as another form of governance to construct the ‘good PHA’. The part for me that is scary about this is that the other side of the coin - the irresponsible PHA - is the one that is now criminalized. And a lot of the stigma around being ‘irresponsible’ (stigma coming from within the HIV community – I mean just look at some of the facebook comments about your poster) is the same form of stigma that is driving the criminalization of HIV non-disclosure. That is why pointing out this stuff is so important. Not just to be critical, but to talk about where we are going wrong and where our work as the HIV response can end up having unintended negative outcomes.
So before we end our chat, can we talk about re-infection?
Mikiki: Yes please! This has been brought up again and again by service providers regarding the problematic of HIV and bare-backing – the whole conversation of: “but what about re-infection?” I find it really problematic and angering. Re-infection is continually brought up as something poz people need to worry about. But it’s never couched as that there are almost 40 million poz people globally and a miniscule number of documented cases of re-infection. And among those, fewer still those with clinical complications because of that. Instead, we’re still going to talk about this whenever we talk about your sexuality. Which is kind of similar to telling people that every time you have sex to just be aware that you might get hit by lightening and shit yourself. So just be aware – you may never want to have sex again, it’s just a possibility!
Alex: Hahaha! Thanks so much Mikiki. I appreciate you taking the time to chat with me about this. Just so everyone reading this knows, we would like to hear from the readers of PositiveLite.com. So please comment below if you feel like participating with us. We are both humble people, and are open to being challenged and questioned.
Mikiki is an HIV-positive performance artist, activist, educator and sexual and reproductive health worker who emphasizes community-based practices and radical queer approaches across all of his work.
Alex McClelland has been living with HIV since 1998 and is a community organizer, activist, researcher and educator. Alex is a Steering Committee member of AIDS ACTION NOW! and the Chair of the Canadian Treatment Action Council.
* Mikiki wishes to note that this opinion is not reflective of any one specific agency, rather opinions coming from conversations had with multiple stakeholders present.