We used to be an angry grassroots movement led by those infected and affected with HIV, bent on giving the authorities hell. Now we are safe, professional, and all-encompassing - and muzzled by the governments who fund and regulate the bureaucracies we have built for ourselves,
That was the short version of our history, presented in the kick-off session of Where Do We Go from Here – AIDS Organizations, Services, Bureaucracy & the State”. Organized by firebrand Alex McClelland, a Concordia University student who has packed more activism into his young years than most of us old-timers have in thirty and Nicole Greenspan of the University of Toronto, the one-day event was appropriately held at the 519 Community Centre in Toronto’s gay village.
Our history is often presented as something that newcomers to the LGBT and HIV communities "need to know", but here it was more than that. The suggestion that hung in the air of course, is that we need to regain some of the passion we have lost from those early days. We can in fact use the resources we have built without the restraints that now come with them. Principal villain here is the ban on advocacy work that is a condition of government funding of AIDS Service Organizations.
How did we allow ourselves to get here? Asking that question speaks to the value of history lessons.
Alex McClelland writes in the event program “grassroots social movements are constrained by various factor to transform over time from voluntary and activist-driven responses to become stable professions for those involved, leading to expert and manager-led, hierarchical organizational formations.” Formed initially to provide HIV prevention and support services “today the focus of these organizations has shifted. Many AIDS Service Organizations (ASOs) have complex and sometimes competing focuses including encompassing poverty mitigation, harm reduction, settlement and immigration work, street outreach, online outreach, micro-finance, self-esteem workshops, capacity building, community-based research and addressing sexual violence among many others.”
To that broadening of focus, one also needs to add Hep C and STIs.
McClelland goes on “Initially these organizations formed with decentralized structures, inspired by feminist organizing and also lesbian and gay resistance struggles to counter homophobic police and state violence. However, to survive, ASOs quickly acquired charitable statuses (a state regulated legal organizational mechanism) to support broader fundraising efforts which have led to the long-term sustainability of many essential services. As a result, certain policies and procedures were required around financial accountability and now these organizations are formalized hierarchical and bureaucratic entities.”
Garry Kinsman from the AIDS Activist History Project and Anne Marie DiCenso, Executive Director, PASAN presented the case for going back to our roots as AIDS activists. Gary cited the “total transformation of the response to HIV" and that “people have been organized out”. He suggested that our movement has indeed become highly regulated, and not seen in the business of liberation and empowerment anymore. “We need to operate within and against the structures we have created” and "we need to develop critical response to state funding" he said.
Audience members who took to the microphone were blunt. “We are not pushing back, we are not fighting back” said one. “At what point do we say no?” asked another. “Decisions are decided by money – but how can we organize without money? “ Said DiCenso “we can choose not to accept the money.”
A subsequent session that included AIDS Committee of Toronto Executive Director John Maxwell and CATIE’s Executive Director Laurie Edmiston explored the impact of government austerity and forced integration of services. Said Maxwell, whose agency has had to face cuts in employment and services, “austerity is something we have faced for a long time.” and that resources have been inadequate to make a true impact on HIV prevention. “We are just making do” he said. “We have had to look critically at what we do and make difficult decisions to end or wind down services.”
On the subject of integration of other services he warned against trying to do too much. “Should we continually be taking on the work of other sectors? We need to make meaningful connections both inside and outside our sector.”
CATIE's Laurie Edmiston stated upfront that she is “pro-integration" warning against working with too narrow a focus on HIV. “Broadening of CATIE’s mandate (to include HCV and STIs) has been challenging” she said but “integration is simply the right thing to do make sure that no one gets left behind.” Her moral imperative argument was based firmly on the importance of addressing the social determinants of health, she argued.
It was a good and unusually fiery conversation so far, which clearly energized the 519 audience.
Subsequent sessions discussed “Public Health Surveillance and Monitoring” (whose themes proved useful in framing my article “Measure for Measure” published in PositiveLite.com yesterday) and “Clientization - From People to Clients”. ”Back in the day we did go to hospitals, we did go to clients’ homes” said one speaker, pointing out that we have moved away from a “family” environment by creating boundaries and codes of conduct. "HIV-positive people are seen as ones to be managed and controlled so that they don’t become a health risk to other people.” Another asked whether we are treating those we serve as people or “clients”, a term deemed disempowering and overly clinical that creates unhelpful client/staff boundaries.
Stimulating stuff, all of this, and necessary conversations that we all too seldom have.
Kudos to the organizers for creating a space where avowed anarchists, industry insiders and all shades between could meet, and surprisingly, share some (many?) of the same concerns about what we have become. Solutions were, to be honest, less forthcoming. But in a movement that PositiveLite.com has long argued is not as self-critical as it could be, an identification of our underlying problems seemed a good start for a one-day conference. Now let’s move forward and build on all this.
The question remains though: how essential are government funded organizations to do all the work we do, and the advocacy work in particular, which is banned there? There are models out there – PositiveLite.com itself and AIDS Action Now! come to my mind - who don’t rely on government funding at all but who are capable of making ripples, if not waves, where others cannot do so. It may sound self-serving to promote that model but we’ll do it anyway.
Images from the AIDS Activist History Project.