The AIDS Industry. Michael Yoder on the creeping professioinalism that has altered the AIDS service delivery landscape. For better or for worse?
“The more you have
The more you have to protect...”
The Tao Te Ching
I remember years ago in the earlier days of the AIDS movement we had nothing; at least compared to today we had comparably little with which to work. The new AIDS is different than the old AIDS – in some ways that’s not a bad thing, in other ways it’s tragic. But where there was a movement there is now an industry and what’s lost in that industry is the very heart and soul of the best of what was.
All HIV groups started the same way – around a kitchen table in response to a need that was not being met. During the 1980s, most governments didn’t want to even mention the word “AIDS” let alone talk about safe sex or gay men. In response to that silence, groups formed to care for those who were dying: and those men and women were everywhere. The number of funerals was staggering; the loss of beautiful, vibrant people was agonizing.
It really was a plague. A plague punctuated by hatred, stigma, silence and fear.
And so the groups formed. Tiny pockets of gay men and lesbians and others who knew that something had to be done to address the epidemic. In those days, we had small offices with computers with black and orange monitors that we’d start up and wander away to make coffee, raise children or get a degree before they were ready to use. There was no email, no smart phones, no Internet.
But what we did have in abundance was imagination.
When there’s nothing there’s room to make something. In the absence of money and with scant resources, we made up posters by hand, photocopied them and put them on every notice board we could find. Most groups had only a couple of staff people and a lot of volunteers – the volunteers were the centre of the place. They were the Helpline people, the counselors, the caregivers and the office staff.
How dim that world is now. How distant and indistinct it is.
As groups grew, they gained knowledge and honed their craft. When the money started to become available, groups could breathe – they hired staff and increased resources, but with that change new things happened.
More and more professionals were hired to fill positions. After all, it’s much better to have a professional counselor than a volunteer. It’s better to have a well-seasoned office manager than someone with ingenuity and smarts. And other than those newer small agencies and rural groups, the larger groups know better, think better and deliver more. And yet, curiously, sometimes we need a mouse and not a lion.
The creeping professionalism altered the landscape. Volunteers, regular ordinary people, were less attractive. Accreditation became the pinnacle of that for which we strove and we needed professionals to gain that accreditation. Being legitimate in the eyes of researchers, health authorities and governments, that was more important than being creative and off the wall and inventive.
Way back in the dark days, we relied on each other. Now we rely on branding and marketing strategies and communications directors and the calculated speech of politics. We used to rock boats, but now we would never dare to bite the hand that feeds us – even when that’s our role in society.
In some ways, the more we’ve gained the more we’ve lost. And as the Tao Te Ching says the more we have the more we have to protect. And we will protect it to within an inch of our lives, because it’s far too important to lose. In many ways, we have forgotten how to be creative on our own – except when a brave soul or two steps up and simply does something. But those instances are increasingly rare.
The industry has taken all the water from the “grass roots” movement and the roots are withered and dead. If you brought a person from the 1980s into the present, they wouldn’t recognise HIV groups today; they wouldn’t understand the complex jargon and terminology that separates real people from the work. They wouldn’t understand the need to spend money on glossy publications and social workers and massive office spaces with open area concepts.
And I think they would weep.