As I prepared to attend CAHR2017 in Montreal I was elated, but a bit nervous as well. I hadn’t qualified for a community scholarship but had been accepted as a CATIE rapporteur. This meant I’d be covering the event for CATIE as well as for PositiveLite.com and then on the final day, my fellow rapporteurs and I would present a report back to the rest of the conference with a distillation of what we’d seen and heard. So yes, I had butterflies, mostly because I haven’t done much science writing before and I’d already heard from others who’d found the schedule demanding.
As it turned out, I needn’t have worried. Because the sessions are concurrent they are divided into science “tracks”. I opted for social sciences, as did several other rapporteurs – there were 15 of us in total.
Our keynote speaker was Laurel Sprague, just one month before she is to take over as Executive Director of GNP+. Her address was entitled, “Now we do the hard part.”
She spoke first about HIV as having shown us the connection between health and human rights, beginning in 1983 with the Denver Principles and evolving through the Paris Declaration and the GIPA Principles, to the 2000’s and the disappointing United Nations declaration and on to the present day. And we heard that while this is a time to celebrate the many advances we’ve made, the really hard part – the human rights part-- is still in front of us.
She spoke of the “tolerance paradox” – that, despite all wanting to be seen (and to see ourselves) as attached to human rights principle, this is not often manifest in reality. Witness the treatment of those living with HIV, to whom “we respond by punishment and control.” Despite lip service to human rights principles, key populations are largely considered disposable, are regularly discriminated against and criminalized and are sometimes murdered outright without much outcry. “HIV is asking us to be a human family that does things differently.”
It was also mentioned that even within the HIV sphere, “...everybody gets paid for research but the community. Why?” And while Dr. Sprague’s overarching message was about the need for compassion and solidarity, this issue of the way community is treated in research resonated with a lot of people I spoke to at the conference.
“Some of us live with HIV and some live from HIV,” said one attendee. And another said: “...stop using us as guinea pigs, stop benefiting from research while people living with HIV get little to nothing in return, stop over researching us to keep yourselves employed, start putting the funds into programs that address the real needs of people living with HIV, train and build capacities of people living with HIV so we can do our own identified research, not what the experts deem important and – pay us for our time.”
Next on the program was a series of presentations under the banner, “An Indigenous Research Feast: New Directions for HIV Research With Indigenous Communities”. One thing that stood out for a lot of people was the introduction to the concept of “two-eyed seeing”, meaning a blending of western and indigenous world views. One especially inspiring presentation, “Storying Change...”, was about workshops that focused on digital storytelling as sexual health messaging created by and for indigenous youth… a digital extension of Indigenous oral tradition.
Another presentation, entitled “Peer Support Efforts Promote Health Access for Indigenous Sex Workers: Critical Need for Self-Determination in Indigenous Sex Worker-Led HIV Prevention and Care” was about just that. We heard that peer support and leadership are the strongest drivers of increased access to health care for this population. However, while indigenous sex worker-led engagement models are critical to the HIV response, sex workers are often left completely out of the funding envelope.
At a crowded lunchtime plenary on our ability to produce national statistics to show where we currently stand, relative to the UNAIDS 90-90-90 goals (we’re not there yet), coalition of community advocates under the rubric, Sero Syndicat Blood Union staged a demonstration against the criminalization of HIV.
The demo included an impassioned and moving speech by Chad Clarke, who spoke of his own criminalization and the impact it’s had on his life. I caught the first few minutes of the demo on video, including Chad’s address, which was one of the highlights of the conference for me. I basically just kept shooting until my battery made me stop. My warts n’ all video coverage is here.
Most of what we heard regarding Gay and Men having Sex with Men (MSM) was around PrEP issues. One interesting presentation was called “The PrEP Stigma Paradox”, in which it turns out that some MSM have found that PrEP allows them to feel more honest, less stigmatized, while others found that it made them more fearful of being judged as “a certain kind of gay”, or the fear that their partners might not want to use condoms because of PrEP. For me the salient point was that most PrEP stigma, like a lot of HIV stigma, came from within the gay community.
“We’re Here: Subjugation and Resistance in Older HIV+ and Gay Men” spoke of the complex relations gay men have with health care, where homophobia and HIV stigma are rampant. And further, “Discursive forces rooted in homophobia and HIVstigma are critical in shaping contemporary resistance.” And further still, the body was spoken of as a site of resistance. But we knew that, didn’t we guys?
Much of the rest of what we heard regarding gay men struck me as quite sex-negative opinion dressed up as qualitative research – the sort of thing you get when researchers decide they’re the gatekeepers of western morality. Some of us live with HIV and some of us live from it, as the lady said.
There was also a brace of great sessions of the criminalization of HIV non-disclosure as it applies to women. Particularly striking was one study in which women made body maps to express their symptoms and experience of HIV criminalization. Pervasive is the sense of profound and bewildered outrage as they face laws that make no sense other than in terms of hatred weaponized through law. Be careful whom you trust; your service provider can be subpoenaed.
Another, “Influence of Criminalization of HIV Non-Disclosure on Intentional Sexual Activity...” (they all have such long titles!) detailed how criminalization of HIV non-disclosure contradicts the science (#UequalsU) and propagates stigma and misconceptions as well as violating rights to freedom, autonomy and privacy and intersecting with other oppressions. It was striking that so many women in this study voluntarily abstained from sexual activity due to worries about stigma, being criminalized, etc. “Women protect themselves from the law; the law does not protect them,” said the presenter.
The poster exhibition was great for me as well. It looks like corridors with posters along each side, but what it really is, is a whole orchard full of knowledge trees, branches heavy with fruit and ripe for the plucking. I wandered around here in happiness whenever I got the chance.
So in the end, they were right about the schedule – it was a bit tough, but so what? It was three days of mostly good research and spirited discussion with a strong HIV criminalization reform element, all the more so because on the eve of the conference, CAHR endorsed the Canadian Consensus Statement on HIV and its transmission in the context of the criminal law. You can read about that here.
It was also three days of meeting old friends and making new ones and I wouldn’t trade my experience at CAHR for anything. Thanks to the CATIE Learning Institute and to CAHR for the fantastic learning opportunity they provided.
All photos and video: Rob Olver.