11/27/2012 12:03 EST | Updated 01/27/2013 05:12 EST

Has AIDS Work Lost Its Heart?


The HIV movement in the Western world has been going since the mid-1980s. Those were the bad old days, when people were dying and the gay community was devastated by countless losses. But sometimes I wonder if in fact those bad old days were the good old days.

In the early days, there was nothing. No community groups, no safer sex campaigns, no AIDS Walk -- a desert in the face of a plague. Then people started to get together around kitchen tables and asking "what will we do?" In the face of a lack of action from government, whether through homophobia, AIDS phobia or not wanting to "condone" anything vaguely sexual, gay men and lesbians, concerned friends and family, in spite of fear, developed those early projects and programs that supported people living and dying with HIV.

How things have changed. Since 1996 we have better medications and we live longer, fuller and healthier lives. People who are newly diagnosed and the young might not remember the endless funerals and whisperings about who was sick, who had committed suicide, or who had partied to death to escape the inevitable wasting and loss of personal strength and dignity.

It's certainly a good thing that we have better medications, but the AIDS industry has become so dichotomized and disjointed that it is not recognizable from those early "grass roots" days, where everyday people did what they could with little resources and a whole lot of heart.

HIV has developed a twisted personality. On the one hand is the medical community and government that chooses to see HIV as a purely medical issue: the only things worth counting are blood levels, numbers of infections and how many syringes we've exchanged. There is no humanity in that model.

On the other hand, the community-based movement has become so professionalized that it is no longer about ordinary people doing extraordinary things: it's now about social workers and people with degrees delivering ever more "complex and comprehensive" services to "marginalized" populations. The level of jargon has become its own miasma of acronyms and dehumanizing catch phrases, fueled by well-meaning people who need to do more research on the research that's been researched.

The grass roots of HIV have withered and died.

When the treatments improved, we seemed to drop the need to reinforce safer sex messaging, in part because the focus shifted to intravenous drug users and people with mental illness; but also in part to our lax view about HIV -- it became "a chronic manageable illness". Gay men became disenfranchised and left (for the most part), and the elders in the community are silent about the history that is so valuable to learning and exploration. Other than in smaller centres, the volunteers of long ago have been replaced with professionals who know better.

In the past we didn't know that we couldn't do something so we went ahead and tried. Sometimes we succeeded and other times we failed; but each time we learned something. In the past, counselors were just ordinary people -- no degrees in psychology or social work, just people who wanted to help; Helpline volunteers (I was one of them), were given a big book about safe sex and a few pointers about talking with people and we were on our own. In the past we had computers with black and orange monitors that took all day to start up, there was no Internet and we made posters by hand, photocopying as madly as we could.

Large groups today forget those early days when they weren't large at all. They were also born around kitchen tables and struggled to make ends meet, hoping there were enough volunteers to keep things moving. Those dark days were productive and vibrant in their very simplicity - the stumbling baby steps that created a movement during a period where fear and loathing, among the general population, were at their apex.

But those small groups gained in efficiency, becoming ever more smart and with that increased capacity, came more staff, more money and ultimately more bureaucracy. The volunteers were slowly replaced with professionals and the movement became an industry -- in the same way that pharmaceutical companies strived to improve medications, the non-profits strived to become bigger and better, sacrificing childlike creativity and second hand store technology for boutique-style luxury and market "branding."

Even the medical model has shifted. From a place where there was a recognition of the whole person, things have become all about harm reduction (read needle exchange) and counting numbers: how many are on treatment? How many fewer infections? How many needles? The whole person has disappeared into the morass of ever more complicated health authorities and omnipotent bureaucracies that comes with that and counting is all that counts. Now we all need advocates to ensure adequate care and "navigators" to help us figure out the basics of human entitlement.

Can we recapture the past naiveté that allowed us to try new things blindly, simple things that moved us forward without a "branding" campaign and slick expensive productions? I doubt it. We have moved so far from that place and there are so many well-paid jobs to protect that we will never be able to find our lost innocence. Sadly, it was that very innocence that has brought us to where we are.

The AIDS industry has killed our imagination and we are trampled beneath the boots of "progress". The disaffected will continue to stay away from HIV groups and the medical model will gain increasing strength as agencies battle for the scant dollars tossed at them like so much chicken feed.

We shall never again bite the hand that feeds us.

And the road to hell is being paved as we speak.