“I’ll get you! And your little dog, too!”
The Wizard of Oz
I recently had a conversation on Facebook about how everything seems to be falling apart in the AIDS movement (or “industry” as I choose to call it). Funding is being cut to various groups across the country and what little is left has enough strings attached to make a marionette look absolutely free.
I think it’s a symptom of “creeping professionalism” – more and more we are faced with less “community” and more “bureaucracy”. Dare I say the founding parents of the movement would not recognize this new creature.
It used to be that people living with HIV had a part in the movement, but now our interaction is either as controlled “peer workers” (we should be grateful), or where we can be involved in peer groups we can be policy makers – at the whim of the funders.
It’s all at the whim of the funders. With a stroke of the pen an agency can be obliterated. I’ve seen it. Here in Victoria, the health authority has decreased the level of service by one agency. All it takes is “restructuring” and two cheques become one.
HIV work used to mean planning and implementing those programs and services that met the needs of everyone – regardless of where you are in the socio-political system. As treatments improved the shift in programming needed to reflect the changing needs of people living with HIV and in the late 1990s more attention was paid to street-involved and substance users (much needed, but not everyone is an addict).
Gay men were silenced in this new mode of thinking even though we remain the largest number of new infections. Mental health and addictions are all the rage – even though women and youth are increasing and sexual transmission is still high on the list.
How do we fix what’s broke?
I don’t have a clue…
When we’re faced with growing demands from funders to become something that neither serves the community nor is willing to even acknowledge that their approach is skewed to what is not needed, we’re all in deep ka-ka.
On the other hand, as people living with HIV – the ones who actually experience the stigma and discrimination, the fear of criminalization, the shunning within our own communities and sub-cultures, we do have the opportunity to raise our voices and say no. The Paris Declaration (20 years old this year), and the Denver Principles should be the underpinnings of the “industry”, but I fear they were forgotten many years ago. Ask a local funder about them and I’ll bet dollars to doughnuts that you’ll get a blank and quizzical stare. Those things have little meaning to anyone anymore.
We have to find a way to combat the creeping professionalism on a personal as well as collective front. I think we have to find a way to press the issue of our involvement and voice in all things HIV – not just on a local level, but nationally and internationally as well.
In Russia we see how things collapse – gays are vilified, and I believe not because they are gay, but because governments need to have a scapegoat. The same is true in the HIV movement – we, the people living with HIV, become the hated and betrayed because there is need for that.
Our elders are growing old and getting tired, and the young seem too consumed with introspection and they were born into an age where they don’t realize how much we did with nothing in the past. So, the professionals (most of whom are not HIV+) will determine our fates, because we have allowed that to happen. Funders will decide direction and we will have no voice in the process, be no guiding force, have no inclusion (or at best token inclusion), because we have allowed that to happen.
And as I often say, there are not enough houses to drop on the people who need houses dropped on them.