The HIV movement has a long history of personal testimonials, and these can be our best weapons in the fight against stigma. An individual telling his or her story can help to put a face on something that is very abstract for the general public and can elicit sympathy or empathy from those hearing about real life experiences. Sometimes, the approach is better than a whole lot of statistics in the struggle to bring attention to our cause and to move decision-makers to action.
But what do you do when an individual’s story contains factual errors, or crosses the “party line” on any of a number of issues, or simply lacks the nuance that might make it fit in better with all of the other messages the movement is trying to communicate? It’s difficult to conceive of an appropriate way to counter those testimonial excesses — telling someone what to say is robbing them of their personal story and invalidating the very thing that would make it valuable, while speaking up in the same forum to contradict the “erroneous” message is really no better, and likely humiliating for the person sharing his or her story.
I remember the first time I heard someone speaking about his diagnosis with HIV as “the best thing that ever happened to me”. I kind of choked, thinking about what kind of impact that might have in terms of prevention messaging. I have since tried to use that message myself with added nuance: getting my HIV diagnosis was a trigger to treat myself better and to reconsider what I most valued in my life. I always add that the members of my audience should consider having that kind of reflection without getting HIV.
Two more current examples spring to mind: criminalization and PrEP. We people living with HIV are not all on the same page on these questions.
There are plenty of people living with HIV who know — or feel they know — from whom they contracted their HIV and feel deeply wronged by that person. While many of the cases of criminal prosecutions in Canada do not involve transmission of HIV, some do, and those are cases where one HIV-positive person has filed a complaint against another and is serving as a witness for the prosecution. Some are even happy with prison sentences meted out to the person they are sure infected them.
That really flies in the face of the message most of us are trying to convey, that criminalization is not the answer and, if it is to be used at all, it should really be limited to cases of actual intentional transmission. Even that makes me vaguely uncomfortable, due to the myriad of factors that influence a person’s comfort with disclosing his or her status to a partner and how the state might consider the intention behind that omission. Still, I have enough respect for the courage that it takes to speak about one’s own experience with HIV in front of a crowd that I would hesitate to speak up to contradict the pro-criminalization point of view voiced by a person with HIV in the public forum.
PrEP is probably a little easier for me, as it is a little less an emotional issue personal to the speaker. I do come from the generation that invented the condom strategy and that has more trouble understanding why you would forgo the prevention method that costs a few cents a pop (and is usually available for free) for one that costs more than $25 per day. My thoughts on this issue have evolved on a political level.
Still, I carry around enough fear of transmitting HIV to someone else that I’m not sure that either PrEP for a partner or my own undetectable viral load would be enough for me. I do recognize the science and won’t impose my own personal irrationality on the behaviour of anyone else. I will defend either option as a legitimate choice without necessarily accepting it for myself — and I don’t usually talk about that personal hesitation openly for fear of contradicting my own and my organization’s official position with respect to the broader issue of prevention. So I’ll swallow my personal hesitation and vigorously defend the PrEP and TasP options for others.
I guess I don’t really have an answer for this discomfort I feel. It would be simple to say I ought to feel the same freedom to speak up and voice my point of view, even to contradict the perspective of another person with HIV, but I have all kinds of privileges that allow me to express myself far more often than many can, so I hesitate to horn in on the times others have to express themselves.
What do you do?