Like so many, and always with appreciation, humility, and just a little bit of shock (sometimes), I lived well beyond my ‘best before date’. These many years later, I celebrate my life with HIV and my life – period – every single day, trying not to take its extraordinary complexities for granted. I also spend a whole lot of time reflecting on the incredible efforts of the community-based movement which has, over too many decades and in countless ways, made it possible for me, and for so many, to beat the proverbial odds.
I continually assess my personal (and professional) ‘place’ in our HIV community and I am often overwhelmed by it all: by the stamina and the raw energy that we have expended on what has almost always felt like an up-hill-climb; by the strength and the patience we had to summon, and foster still, to face the innumerable obstacles we navigate and the antagonists we encounter along the way; and by the unequivocal resolve we share, by-and-large, to triumph… to live… to thrive – with and for one another. Perhaps this isn’t as unique to the HIV community as we think it is or ought to be. But it defined our community in the early days, and it continues to distinguish us and our unyielding individual and collective commitments to each other, to the community-based movement that holds all decision-makers to account, and to the high bar we set for ourselves in terms of mutual- and self-respect, tenacity, and dedication to a movement through and with which we make and sustain change together in ways that, simply put, other communities just don’t.
Did I just write an introduction that falls somewhat short of what is real? Are the first few-hundred words of this piece hopelessly “Pollyanna-ish”? I promised Super-Bob Leahy that I wouldn’t go on-and-on with rhetoric or glossy preamble; that I would come to the point and call things the way I see them now, as a person living with HIV and a person who currently serves the Canadian Positive People Network (CPPN) in a quasi-official capacity as its Executive Director.
As I see it (and many have heard me say outright), for many of us, it feels like the HIV community we’ve spent more than 30 years building is under siege – threatened by and/or experiencing upheaval and erosion like never before. For some of us, our community is changing as it should, though not easily and certainly not without an unprecedented need to answer some really tough questions about what we’re doing, why we’re doing it, and whether or not our efforts are (or will be) effective.
"Too often, in my opinion, we are most cynical with and harshest in our criticisms of the same folks with whom we stand in solidarity, by default and by declaration."
These are real observations that illicit justifiable consternation. But, just maybe, they also call for and deserve (cautious) optimism. Why? Because we are still activists; our ‘landscape’ has shifted, but our roots are well-established and our will is unshakable. Change is rarely easy. But, for better or worse, change is inevitable. So, at the end of the day, we have a choice to make: embrace and be part of the change we want to see, or accept that the change will (and does) happen without us.
Through that continual self-assessment I reflected on earlier, I find myself frustrated by, and sometimes (sheepishly) complicit in counter-intuitive and counter-productive antagonism that comes from within the very community we work so hard to protect. Too often, in my opinion, we are most cynical with and harshest in our criticisms of the same folks with whom we stand in solidarity, by default and by declaration. It is always easy to call it like we see it when there is a problem; it is more difficult, it seems to me, to take a consciously active role in the solution. Both are possible and both are necessary… especially now.
Calling it like I see it, this is as much a plea for patience in problem-solving as it is an editorial which is shaped, in part, by my recent experience with and passionate commitment to the CPPN and its commitment to meaningful engagement. In a piece he wrote for CATIE’s “Positive Side” (Fall 2016), John McCullagh quoted me as saying, “In the CPPN, I have found my HIV family.” It was true then; it is true today! I really did find my HIV family and I realized that it is a typical family in most ways: its members are diverse and its dynamic energy is sometimes challenging; its growth is slow and often painful; and, its maturity is a work-in-progress that will test patience now-and-again, but will always reflect the shared values of its individual members. What is less-typical of the CPPN family, perhaps, is the degree to which its potential value and its ‘place’ is the subject of more skepticism that emanates from “within” than I anticipated or, frankly, understand.
It is no secret that the CPPN recently experienced a fairly tough time in its evolution: some quietly called it a crisis of confidence (of sorts). I took a step back myself to sort out, in my own mind, what I needed to do to help contribute to the change I wanted to see: to accept my own part in and responsibility for the problems we were faced with, and to figure out what I needed to do to be part of the solution. It wasn’t easy for me (or for any of us), but it was and will be worth it! The CPPN is Canada’s first and only national, independent network of, by and for people living with HIV and HIV co-infections: it’s a change I want to see; it’s a change that isn’t easy but that deserves optimism.
The other day, the CPPN launched a comprehensive e-Consultation initiative: an electronic survey that asks a number of questions about the CPPN’s form and function, and that seeks advice and guidance with respect to its mission, goals and objectives, and its long-term vision. Invitations were sent directly to nearly 400 people (CPPN members, and community-based stakeholders from across the country), and a link to the survey was posted on various social media platforms. In less than 24 hours (and at time-of-writing), the response-rate was approaching 15%. This is encouraging. Obviously, it is far-too-early to draw conclusions about where the community wants the CPPN to go over time, but it is evident already that support is emerging for the CPPN, albeit with some restraint or reservation in many cases, and not without some harsh criticisms and/or suspicions in the mix. So, here is my plea for patience in problem-solving: