I want to write about my own journey in recent months, but also the future path of the organization of which I am now Executive Director. That path recently was made more inviting, courtesy of the Public Health Agency of Canada (PHAC).
First some history.
PHAC made its announcements revealing which organizations it invited to submit Letters of Intent for consideration of funding under the new Community Action Fund. The Canadian Positive People Network (CPPN) was not among them and it appeared that many of its closest community-based allies and partners would be deeply affected. Many organizations with which people living with HIV and HIV co-infections had connections going back as far as three-plus decades would wind down operations, and new organizations with which many of us had little familiarity or no personal relationship at all emerged as key stakeholders.
Some of us welcomed the changes, but many of us were confused and left wondering where or how we would find and keep a foothold on this new and dramatically different landscape. So, on behalf of the CPPN and with members of its Board of Directors, I organized a virtual meeting of its members, allies, and community-based partners during which we would dig in together to assess and understand the real and potential implications of it all, and to mobilize as a community of people living with HIV and HIV co-infections to ensure that our voices and perspectives, together with our invaluable lived experiences would not be lost. I didn’t make it to that meeting and much changed in the months since. I want to reflect, if just a bit, on where the CPPN is now. I want to reflect on how I hope that early excitement around the notion of the CPPN can re-materialize with the community’s robust energy and shared commitment to the greater and meaningful engagement of people living with HIV and HIV co-infections as the notion is transformed and the CPPN’s five-year plan takes shape.
Now I need to provide a bit of personal perspective and context…
When I sat down to reflect on how I would frame this article, I realized that I was hyper-conscious of the date and the time: October 11th, Thanksgiving Day and just shy of 5:15 in the afternoon. I was sitting comfortably at my desk, just a couple of metres away from where, one year ago – almost to the minute – I was on the floor watching my partner and my mother pace frantically from window-to-window while waiting for an ambulance to come up the driveway. I was barely able to stand or walk, unable to swallow, and I was hardly able to think straight or, for a while anyway, utter a sensible syllable or string together a cohesive sentence. Still, when they did arrive, I found words somehow to argue with the paramedics that I had a simple flu and that they were surely needed by someone in emergent need somewhere else.
I didn’t win that argument. Before I knew it, I was strapped to a gurney while we raced to the emergency department at Ottawa’s Queensway Carleton Hospital. I had no idea what was happening. Turns out, I missed a very important meeting that night… I survived a stroke instead!
Through this medium and others, what happened from there is well-chronicled, as is the incredible support that so many of you shared with me and my family during our post-stroke journey. What you may not know is that, after months in the rehab hospital, I unwittingly spiced things up a bit with an admission to hospital for treatment of a life-threatening blood infection (very near-death, really), followed by two more hospital stays to undergo and recover from a couple of non-elective surgical interventions between February and July of this year. More importantly, though, I learned how to walk again. I regained my ability to swallow (though, I lamented that achievement sometimes – well, when the hospitals’ food trays showed up at my bedside). I got my driver’s licence back and will live with the temporary conditions attached to the privilege without complaint. And, I decided to embrace my surgical scars because they are not blemishes, they are life-affirming for me – they are my scout’s survival badges. Alas, while I was asked if I’d consider sharing an update, the story many of you already knew (or know now) is really not the point of this piece.
I attended the realize forum and annual general meeting last month in Toronto where, after a full day of rich discussion about HIV and mental health, I had the privilege and very good fortune of listening to the brilliant and much-respected Stephen Tattle share remarks after receiving the 2017 Elisse Zack Award for Excellence in HIV and Rehabilitation. Stephen was, as always, incredibly humble and gracious … perhaps, even, a bit shy at times. This was a moment for Stephen to reflect on his long and illustrious career, and for us to celebrate his incredible achievements with, in care of, and on behalf of people living with HIV. Listening to him brought about, for me, an acute awareness of why we do the work we do, and of the difference we can make in the lives of people living with HIV because we do that work in earnest.
But, afterward, I also had the luck of a brief conversation with Stephen on the steps outside of the hotel, during which he made a comment that really struck and stuck with me. I won’t quote him, but, essentially, he congratulated me for winning the blink context against my stroke, and alluded to the invaluable lessons I must have learned about resilience and rehabilitation throughout the journey. It struck me personally because he was spot-on… I learned more from one experience than from a lifetime’s collection. I’ll never resent my stroke or what it put me and my family through because of what it taught me – not about living, but about life. One of the take-away messages from the Forum that I reflected on was about resilience. My Forum experience and the too-brief chat I had with Stephen made it clear for me: resilience is, perhaps, more about what we’re living for than it is about what we’ve lived through; it’s less about learning lessons than it is about living the lessons we’ve learned along the way.
"Last year, at this time, the CPPN was not among the organizations for which funding was available through the Community Action Fund. Today, the ink is all-but-dry on a five-year funding agreement that doesn’t just secure a future for the CPPN… it validates the CPPN’s importance and value in the Canadian response to HIV and HIV co-infections."
Stephen’s comments also struck me professionally, particularly in my current role as the CPPN’s Executive Director and in how I think about the CPPN and how it can (and will) epitomize the resolve and resilience of a Canadian community of people living with HIV and HIV co-infections. It brought me back to that meeting I missed last October; it brought me back to the incredibly important and necessary conversation we – people living with HIV and HIV co-infections – needed and still need to have about living the lessons we’ve learned. I’ve been thinking about it since – not obsessively, but almost.
In his book, One City: A Declaration of Interdependence, Ethan Nichtern wrote, “When we aren’t personally acquainted with the beings who make up our community, the truth of interdependence becomes an abstraction. And when the connections between us become abstract, we start to doubt they exist. And when that doubt settles in like a rolling fog, we shrug away our responsibility to others.”
I don’t love everything about the Community Action Fund, and I don’t ignore or discount how much of our community is or will be impacted by its implementation. Perhaps not as boldly or as publicly as some folks might like, I have been critical of the process and of the outcomes with a number of senior Public Health Agency officials. But, I don’t hate everything about it either. As most people know, I ‘retired’ from federal public service not that long ago, leaving a position which included a role in helping to re-think and re-shape the federal government’s approach to community-based funding for HIV and hepatitis C programs and services.
Please don’t misunderstand… as a newly-(re-)minted community-based stakeholder, in and outside of my current role with the CPPN, the Community Action Fund and its implications on the ground took me by some surprise. I am troubled to know – and to feel – that too many of my peers feel left behind by the Community Action Fund. Not melodramatically, I, too-often, lose sleep thinking about how changes to the federal government’s community-based funding model could seriously diminish or dismantle a truly inclusive and meaningful approach to peer-based interventions and opportunities which ultimately serve to improve our health and social well-being and our quality of life.
At the same time, I am not allergic to the notion of stepping back just enough to realize the potential benefit of a little bit of change. For me, what we experience as we come to terms with the Community Action Fund and all of its implications (the good; the bad; and the ugly… and, all three exist), is not a rolling fog through which we navigate as members of an abstract, unacquainted community.
As a person living with HIV, I resist the fog. Whether hand-in-hand or at arm’s length, I choose to see clearly the resiliency of my peers; I choose to live our lessons. As the CPPN’s Executive Director, I flatly reject the fog; despite organizational development trials and tribulations (“growing pains”) that left people questioning the CPPN’s capacity or readiness as an effective national network of, by, and for people living with HIV and HIV co-infections, there is no fog!
Last year, at this time, the CPPN was not among the organizations for which funding was available through the Community Action Fund. Today, the ink is all-but-dry on a five-year funding agreement that doesn’t just secure a future for the CPPN… it validates the CPPN’s importance and value in the Canadian response to HIV and HIV co-infections. This means that we will have the resources necessary to work together, as peers and as allies, to make a difference; to be present and engaged, never left behind, in every deliberation and in every decision that is made for us, with us, and BY us.
"There is just one catch… GIPA/MEPA/MIWA is real, but it’s not automatic if we’re not together in it; we can’t take it for granted. We have to want it! We have to mean it! WE have to make it happen!"
It’s worth celebrating… right? There is just one catch… GIPA/MEPA/MIWA is real, but it’s not automatic if we’re not together in it; we can’t take it for granted. We have to want it! We have to mean it! WE have to make it happen! Honestly, our best intentions are not enough… especially now. So… let’s be resilient… let’s work together to live the lessons we learned; let’s focus on the “by us” and make it happen.
I’ve engaged with a number of CPPN members in the last few days about how troubled so many of us are about shrinking peer-based/peer-focused space; about the alarmingly dwindling number of opportunities for people living with HIV and HIV co-infections to come together as peers and as experts in the community-based response to HIV and HIV co-infections. I get it; I share the concern; and I am motivated because the concern is far-from-artificial.
An official announcement of the CPPN’s annual meeting of members is imminent. While we hoped to convene our first-ever, (fully-funded) face-to-face national symposium in November, a surprisingly low response-rate in terms of members’ interest and availability suggests that the timing just isn’t right at this time. I honestly don’t know how to interpret that reality, but I will remain optimistic that it’s a matter of circumstance and timing, rather than surrender to indifference or the absence (or loss of) confidence in the CPPN by its members.
As a person living (and aging) with HIV, I am thrilled to see that an exciting, sustainable future for the CPPN is taking shape. As the CPPN’s current Executive Director, I am beyond thrilled to share – unequivocally – that the CPPN has ARRIVED. At the same time, I make no presumptions about its long-term form or function. For as long as I am afforded the privilege as its Executive Director, I will remain unyielding in my resolve to ensure that the CPPN truly is Canada’s only independent, national network of, by and for people living with HIV and HIV co-infections.
But I can’t and won’t do that by myself, so I look forward to working with you to make it happen. Let’s figure out, together, what “IT” is, shall we?!