I hated research. Well, I was ignorant of how omnipresent it is, how unavoidable, how insidious it can be and how it touches lives, negatively and positively. Ignorance breeds distrust. Research in all its wide aspects seemed manipulative and premeditated. It still does. Now, when I have amassed as much privilege as a wetback with a foreign accent can amass, I think one can use research to do good things. Not easy, but possible. Or this is the story I keep telling myself.
Community-based research (CBR) seems to me to be the lotus in the mud of academia, messy, abuzz with personal politics, a tad vociferous, a bit too relativistic. I love CBR because it feels like the everyday, the Latino working class telenovela that attracts me.
Growing up working class in a military dictatorship in Chile tenderized me to certain kind of research. I was ten years old by the time soldiers trampled on all culture, progress and human rights. Socialists and communists seemed to be doing interesting things, protests and allegorical music, they smoked weed, they talked Marx, they wore long hair and cheap clothes, they worked with the average folk in shanty towns and dilapidated policlinics; they mixed poetry, public art and difficult ideas in sexy ways. And they were profoundly homophobic. I could get over that. I did. They changed their tune in the next three decades. What they did was always community-based, and they ran the risk of being discredited and even killed.
Vancouver, BC was such a sleepy provincial town when I came to Canada. Little I knew that big things would happen to me. I acquired HIV within weeks of my arrival, and acquired a PhD in a small university called Simon Fraser in 1999. I met a lot of North American socialists and communists, well-intended Anglo-Canadians, bleeding heart liberals, HIV activists and public health bureaucrats, I met too many doctors and nurses. Vancouver and HIV have changed much the last three decades.
I became an impatient “patient” and ten years into living with HIV, on the dot, I became a frequent flyer on ERs, hospitals, and clinics. I lost friends and tricks and lovers to AIDS. Although I was turned off by numbers and statistics and reports and the superciliousness of academic manners and hoity-toity incoherent and disconnected presentations from behind elevated podiums, I saw how authority and credibility were built on research. I was set ablaze by the stories, the opinions, the rants, the superstitions of those dying, those caregiving and those attending. It was academic lesbians and HIV activists who helped me understand the place of research, its byzantine hierarchy, and the role of researchers and what research is intended to do when efficient and well conducted. I also saw a lot of mediocrity, lots of platitudes and useless data, graphs and recommendations. I am sure I contributed to the noise too. Community-based research always seemed the most personable, friendly, accessible set of methods, ethics and knowledge transfer, translation and exchange.
My sense of inadequacy, never being as good or as credible or as eloquent or as thorough as the others, made me choose simpler language and simpler, but not stupid, people and simpler, but not stupid, ways of analyzing the world, the everyday of death and stigma, the resilience and horror of AIDS in the 1990s. I am sure others think qualitative research is very difficult, they have told me so, but qualitative research with the people, for the people and by the people comes organically to me. Not in vain, I became a high school teacher at twenty years old and a PhD in education at thirty-six. Even today, I cannot conceive of research without a message, a teachable moment, a learning for the “subject”, even learning to subject to the methods, auscultations and analysis of others. My most formative experience came when I had the chance to work in the mythical Downtown Eastside of Vancouver, with drugs users, prostitutes, homeless and crazed. They are fast learners, sagacious and crafty and I have always admired that.
It would be disingenuous to say that I drank the cool-aid of neoliberal Canadian education without getting intoxicated by the taste of privilege. I did. I do. On my way, I canoodle with many a hypocrite and wasted taxpayers’ time and hopes, but I have also meet amazing researchers of all ilk, methodologies and stripes who are committed to community-based research.
What makes one a community-based researcher? I like smoking with regular people outside at the back and get the real 411 on their reality during a break from a focus group, a stilted interview or a constraining survey. I like modifying formal academic stuff with language and visual chosen by unsavory people, ethnic people with scars, folks with checkered pasts, marginalized because they use drugs or sex to quench an addiction or—perish the thought!—for fun. I feel affinity even on the days that I hate being over-identified as HIV-positive having to give testimony again and again.
Even when my autopathography is grounded in my hard past and the everyday reality of thieves and tramps and trans and whores, still seems too ready-made for the decent conference room, a round peg on the square hole of academic research. I am glad that national research funders are now requiring that we bring people into the research in meaningful ways. I have great hopes in the CIHR’s Strategy for Patient-Oriented Research or SPOR.
Zigzag is not often a career path; it is force of circumstance. I have never been bored at work or by the social problems or people I work with, probably because they are barbed and torturous like my life. I have my detractors, especially those who value neutral research and writing formulaic manuscripts in third person. I find resolute and committed allies in those who value working with technology and media, novel protocols, and opening doors for peer researchers living with HIV (PRAs we call them) who venture into our research planet. I am a hybrid nonprofit and academic, a writer and a scientist. I am given generous opportunities by communities of folks who trust me, administrators and researchers who trust me. Community-based research allows its practitioners to zigzag and I am grateful for it. Where else can one say, “I have barebacked” or “I have used crystal meth” and not only “I have done research on those people”?
It has taken me really long to call myself a researcher or a scientist without petulance and understand the power of my influence in specific corners of our small and incestuous Canadian HIV research circles. I am fifty-three years old and I can now lead some research projects but I have no academic career of promotions and teaching and that tenuous academic freedom. I am a community-based researcher because what I do, its results and impact and by own body of evidence, my flesh and bones belong to the groups I work with, sometimes feeling like a prostitute and sometimes feeling like the naked civil servants, those sluts, junkies, trannies, those ghosts of dead HIV persons, the lonely and the ageing with illness that I invoke and, hopefully, work for. I am a community-based researcher because I try to influence the forming careers and minds of the oppressed and the emerging researchers, clinicians and public health workers.
The history of AIDS may be destined to disappear into oblivion and the métier of HIV research is changing, new models come in vogue, like program science or intervention research. I hope they keep a strong foundation in community-based research, or we might be regressing. But I also see new recombinations of ways of understanding health and how to do health research, especially among emerging researchers, this makes me hopeful. Sometimes it feels that young researchers and especially young community-based researchers understand HIV better than the young generations of persons getting infected with HIV as if it were a common cold.
For more stories see the CBRC publication, The Researchers' Own Stories