“Do you know where you’re going to? Do you like the things that life is showing you?”
The UNAiDS Paris Declaration on HIV/AIDS was agreed upon 20 years ago. Prior to that, the Denver Principles spoke about the need for greater inclusion and involvement of people living with HIV in all aspects that affect our lives. These principles were intended as a guide and foundation for inclusion and were the basis for the Greater Involvement of People with HIV/AIDS (GIPA), and subsequently the Meaningful Involvement of People with HIV/AIDS (MIPA) sets of principles.
But where are we now and where are we going? I think it depends on where you live and the culture and politics of the place in which you’re living.
I won’t list the whole of the Declaration here – it’s pretty dry bedtime reading, but the gist of it is that people living with HIV/AIDS need to be involved in everything from envelope stuffing to the operation of organizations and international work. The old phrase “nothing about us without us” is the crux of the equation.
In some aspects we’ve come miles from the early days – at least in the Western World – where we were in the beginning simply “AIDS sufferers” and patients, to the point where we now have more say over policy making and organizational development: but it’s not consistent.
As the work evolved and became increasingly sophisticated, the average person living with HIV was replaced with professionals and many of these were people who are not living with HIV and don’t have a lived experience. Not that they weren’t compassionate fine people, but under GIPA and MIPA it’s clear that there’s benefit in ensuring that people living with HIV receive the kind of education that brings them into the fold.
And GIPA/MIPA is a double-edged sword. With greater involvement comes greater responsibility and sometimes this leads to greater burn-out. We can’t have our cake and eat it, too. Having experienced burn-out myself I know that the more I pour myself into the cause, the more the risk that I’ll lose myself in the work, increase my anxiety and stress and deplete what little energy I might have left. And I know that as much as we’re really good at talking about self-care, we’re rarely good at putting it into practice.
It’s a balancing act on a very thin tight rope.
GIPA/MIPA are meant to guide AIDS groups, health care providers and government and in many ways these groups have responded by ensuring that there are designated board seats for positive folk, that programs are more and more delivered (at least in part) by peers, and that people living with HIV are leaders in the community. However, this isn’t always the case.
In the olden days, gay men held fair prominence in AIDS groups; we were greatly affected by HIV and of course it made sense to include us, if we didn’t start things on our own in the first place. But as other groups of people became of greater concern, gay men became disaffected and dropped away as services and programs were of no value to them. More and more services were geared toward people who were considered “not stable” and harm reduction (read needle exchange) became increasingly important while others considered “stable” had fewer options in the community. We ceased to find an integral place in the movement and shuffled our way to somewhere else. Even worse, some of us became isolated and alone.
While people living with HIV have attained higher levels of involvement in some areas, there remains the reality that while things shift and change, some of us are falling through the cracks – our voices and concerns unheard or dismissed. Peer groups are perhaps the last refuge for those who don’t feel belonging at service organizations.
The saddest part of it all is that most people don’t even know the Declaration exists. Governments, health authorities and even many HIV groups plod along making policies that affect the lives of people living with HIV completely blind to those very old principles. It takes the few who know about them to continually remind the decision makers and big wigs that we’re here and we need to steer the process.
We come a long way, baby, but there’s a long and winding road that lies ahead with no map and no direction. Where will we be headed next? Only time will tell.