As I write this, I am in the latter stages of my efforts to raise money through participating in Ça Marche, Québec's annual AIDS fundraising walk organized by the Farha Foundation. The walk is Sunday, 30 September, and as usual I am worried about how big the turnout will be and how much money will be raised.
In the early days of this activity, people turned out in the thousands. Some people living with HIV were so determined to participate that they did so with the help of friends to push their wheelchairs through the streets. I worry that the level of commitment of our society is not there, but I worry more that people living with HIV have lost interest in their own cause.
We might be the victims of the same scientific advances that have led to our being alive today. I live normally, I have a treatment regimen that doesn't intrude too much on my life and rarely, if ever, does my HIV status enter into the conversation. So are we done with HIV then? Not by a long shot.
First reason to get out there: prevention. We still have new infections every year, even if the rate of new infections is not explosive everywhere in the country (and in some places it is), it is the slow and steady accumulation of personal tragedies that we can't give up on fighting to end. We can be proud of what community action has done since the beginning of this epidemic to stem the tide of new infections. I would hate to think of where we would be today without that work, and I dream of what we might achieve if that community action were appropriately resourced.
Need more? Let's talk about those personal tragedies from the first reason. Those of us who are living with HIV and have been for some time may have forgotten what it feels like to get that diagnosis. Despite all the reassuring words from the doctor about having a normal life expectancy, and despite all of the living proof around us that those words are true for so many, the diagnosis is a crushing blow from which most of us need help to recover. Those of us who aren't lucky enough to have a support network of family or friends, or who can't trust that support network to remain in place in the shadow of the fateful diagnosis have community resources to turn to for help and for a pathway to building or rebuilding the support that is so vital to living and thriving.
Even when things are going well healthwise, we can stumble on the first and last obstacles associated with HIV in our society: the fear and stigma that are attached to HIV and to almost all of the methods of contracting it. These play themselves out in public policy that refuses to do what needs to be done to prevent HIV transmission, in criminal prosecutions for non-disclosure of HIV status, even in the absence of risk of transmission, in lost jobs or denied insurance coverage…and in many other ways too numerous to list here. Those are the front lines of the community action now, defending the rejected and giving them places to be themselves, forcing health officials to act in the best interests of the health of ALL of us. This is work that governments are often reluctant to do (when they are not blatantly hostile) that has to be picked up by the same organizations we founded almost thirty years ago when nobody cared about a bunch of gay men dying of a mysterious disease.
So yes, I will walk, if only to be counted in the street and to make the unconcerned public sit up and take notice of our cause. I will also give according to my means, because I have seen from the inside of organizations the difference that tangible public support can make when funders of many stripes are getting pickier about the approaches and populations with which they are willing to be associated.
I hope you will walk, or that you did walk if your AIDS walk has already taken place. I hope you will also give according to your ability to give.
Ken Monteith is walking in support of the human rights programs of COCQ-SIDA, the Québec coalition of AIDS organizations. If you want to support him, you can do so here.