“All animals are equal: but some animals are more equal than others.”
George Orwell, Animal Farm
At the end of March I attended the Positive Gathering in Vancouver. This event is hosted by Positive Living BC and brings together people living with HIV from across the province. I was struck by the diversity of the more than 100 people in attendance: men, women, straight, gay, young and old; all sharing and discussing the things that are important in our lives as poz folk.
I wonder about the possibilities for this group. I think in some ways we are at best a social club and at worst a pesky insignificance in the scheme of public health. Health Authorities seem to consistently miss the point that HIV is about more than taking our meds and being “good little patients” – we are whole and complete people and our health and well-being depends on more than simply our viral load and CD4 counts.
I attended a workshop on depression: standing room only. This speaks to me that we as people living with HIV have a collective concern about mental health – not specifically mental illness, but the anxiety and depression that accompany HIV and the uncertainty of our future. I’ve noticed that many people living with HIV feel isolated (or isolate) and I myself am known to “hermit” – preferring the sanctuary of my home to the risk of being “out there”. And I’m not a bar person, which in Victoria is one of very few social outlets.
The effects of isolation are lost on public health officials. We can clearly make the argument that there are correlations between mental health and physical health, and yet this argument is specious to a system obsessed with counting things. As Einstein said, “Not everything that can be counted counts; not everything that counts can be counted.” In the scheme of it, we as positive people don’t really count. We are patients, not people regardless of the lovely chatter from researchers and well meaning physicians.
It’s sad. We underestimate our collective strength. We are consumed with consuming and do not see that we wield more power than we could ever imagine. Several years ago, I facilitated a frightening session at the Canadian AIDS Society HIV Forum. I called it “Fabulous Monsters”. People might think that I’m equating us with Frankenstein but no – a monster is a creature that inspires fear and awe. Fabulous means that we are collectively historic and fabled: we have amazing and potent stories to tell and wisdom to impart. We used to do that with alarming frequency. We used to be political animals but we have become reliant on the voices of the professionals and Executive Directors to speak out on our behalf. And those people are muzzled when it comes to the dreaded “advocacy”, lest their funding be pulled. As HIV+ people we are weak and we are mute for the most part.
Of course there are those of us that continue to have the passion in our blood to open our big fat mouths and rock boats; and increasingly we’re getting tired of having to do that. When we rail against a system that doesn’t listen because they “know better”, soon we may just throw up our hands and give up. We don’t Act Up much anymore and in the worst cases we are simply toadies to the elite that make decisions for us.
Events like the Positive Gathering are perfect venues for political action and collective decision making. They could be used to develop strategies to engage our own voiceless community in action and to tell the Health Authorities and governments what we want to see change – we could be the change we want to see and we could move mountains with our strength. We’re smart enough to temper our desires with reality.
Will that day ever happen? I somehow doubt it. We’re more comfortable posting our rants on Facebook than we at rattling cages. We have our own comfortable pen now and we may never achieve equality because we have lost the momentum we had in the distant past. All people are equal, but some people are more equal than others. And we aren’t those people.
And the ghosts of the first ones shake their heads and sigh