I feel a bit rejected. Once again I’m denied a scholarship to a major HIV conference. This time it’s the upcoming CAHR (Canadian Association for HIV Research) conference in Toronto. The organisers describe it as “the main venue for HIV researchers in this country to present the results of their work and engage in vibrant knowledge exchange activities with their peers as well as with investigators in other disciplines and with the HIV/AIDS community”. (My underline).
I guess it’s how we define “community”, isn’t it? Have money, job, connections and a 9-5 engagement with HIV and you’re in. But an independent HIVer who lives the disease 24-7 with no money, no job but a real desire to learn and to contribute and to disseminate is left whistling Dixie.
It would, of course, be easier for an HIVer to attend if they lived in Toronto. No hotel or travel expenses to pick up themsleves, only the registration and day-care perhaps to think about.
But I do live outside Toronto. My rejection letter said I could attend if I could myself find funding for my hotel, travel and registration. But that’s hundred of dollars this HIVer doesn’t have. It’s certainly outside the reach of folks across the province on disability, who have to make $1,000 a month stretch very far indeed. Few of us have connections with drug companies either, who occasionally foot individuals’ bills.
I got a similar rejection from the International AIDS Conference in Vienna last summer.
In both cases I thought I’d made a strong case for getting a scholarship to attend. I’ve been active in the HIV community for the last seventeen years, always as a volunteer, always in positions which require me to be really well informed. In the last year or so, I’ve worn another hat – as an on-line “reporter” with PositiveLite.com. But even though the importance of social media is acknowledged by some, our community is full of late adopters who don't get it, so being an on-line reporter on the information highway which thousands of fellow HIVers rely on doesn’t impress the right people.
There is a slogan sometimes used by those with an affinity for GIPA (Greater Involvement of People Living with HIV/AIDS) It’s “nothing about us without us”. Powerful words, but their practical application often falls short - as it does here - of what those who toiled over the Denver principles in 1983 struggled for before losing the fight to AIDS.
Turn this all around. Perhaps I’m coming from a position of privilege, as an HIVer who has gone to dozens of conferences over the years, expects much and doesn’t cope well with rejection. I’m no stranger to good hotel rooms either. Conferences often use high-end hotels because they are the only facilities that can host events of this large scale. CAHR, for instance is using the swish Harbour Castle Hilton for their conference. I’ve never complained about the price tag of hotels similar to that one when I’ve been accepted, but one gains a new perspective when one is on the outside, nose pressed up against the glass, looking in.
But anyway, when it comes to GIPA, let’s be clear, the picture isn’t uniformly bleak. There are players out there who’ve shined in making HIV conferences accessible to the very people they are about. The OHTN (Ontario HIV Treatment Network), for instance, has an outstanding record. CAS (Canadian AIDS Society) also tries too. It has an annual PHA forum that manages to bring what few HIVers it can afford to Ottawa each year, and that’s good.
I’m not so much of a dim bulb to fail to understand that opportunities for HIVers to engage with each other and with knowledge providers can be a victim of funding shortfalls. Provincial governments, for instance, have played important roles in the past (at Mexico City in 2008, for example) in allowing HIVers to participate in international conferences. But available dollars wax and wane with the economic times. Complications from my disease don't.
The pharmaceutical industry is a major player in the funding game too, and so they should be. But there again, availability of community dollars comes and goes, while our disease does not.
But this is not really JUST about attending conferences. Imbalances in HIVer participation in the HIV movement as a whole go back a long way. Toronto’s Dr Charles Roy, before he passed away from AIDS, authored an important 1996 research document “Living and Serving – The Involvement of People Living with HIV/AIDS in the Community AIDS Movement in Ontario”. That 1996 report and its 2007 successor “Living and Serving II”, offered twenty recommendations to give more substance to GIPA principles in the community AIDS movement. Only a handful of those recommendations have been implemented. That's very disappointing. Having said that, there seems to remain a commitment to getting the job done, with the Ontario AIDS Network leading the way. I was at a consultation last weekend in Toronto, in fact, hosted by that body, where this commitment was quite clear. (I’ll comment more on this potentially important work in a later post.)
But let’s put all this in context. The real challenge of our community in terms of HIVer involvement is not just who attends what conferences. It’s about inclusiveness IN EVERTYHING . The Ontario numbers illustrate the extent of that challenge.
The estimated number of HIVers in Ontario in 2008 was 26,630. Of these perhaps one third aren’t aware of their positive status. So we are left with about 17,000 who know they are poz. Of these, about 5,000 reportedly use the services of an ASO (AIDS Service Organization), the rest of us are doing it on our own. Sometimes we're called “unaffiliated” HIVers. These are important but mostly neglected voices.
So the “unaffiliated”, i.e the majority of HIVers, amount to about 12,000. I’m not alone in worrying how to reach them. They don’t go to conferences, don’t have anything like a national or provincial voice and are part of the community perhaps in name only. Yet we deal with common problems like HIV-related stigma all the time. How do we reach them? How do we hear from them? How do we represent their interests, which might be quite different from our own?
Maybe they don’t want to be reached, heard from or represented, I don’t know. But it’s a struggle for me, as an advocate for HIVers rights, NOT to have dialogue with such a huge sector of the HIV community that I sometimes purport to speak for.
Anyway, I started out talking about being overlooked for scholarships to attend important community events otherwise outside my reach. Actually I can live with that disappointment. I can. What’s harder to come to grips with is the lack of a place at the larger table for so many of and so diverse a group.
We do embrace inclusiveness in our work, but very narrowly defined. Perhaps the challenge is to have the slogan “nothing about us without us” include a much broader definition of “us”.
“Us” is a simple two–letter word. Strange that almost thirty years in to the epidemic we are still struggling with exactly what “us” means.