I’m often reminded these days about the title of a book that came out a few years ago: Participation: the New Tyranny? (edited by Cooke and Kothari). Even as biomedical strategies are gaining a place in the prevention toolbox where previously only behavioral interventions sat, we are talking about increasing “participation” and “community engagement” and “community ownership” of the work that we do in the HIV/AIDS field. But what do we actually mean by participation, to which we pay oh so much lip service? Are we talking about CBPR (community-based participatory research) partnerships among academics and community groups, which in many cases still entail a whole lot more “participation” on the part of the researchers than the community? Are we talking about asking people some questions before we start the intervention, rather than blindly imposing it on them and then wondering why the seats are empty? Now there’s an idea! Even so, the “community” or the “target population” or the “beneficiaries”, whichever is your jargon of choice, rarely initiate this type of “participation”. While their input is certainly more respected than before, in many cases they are still the subjects, the studied, the stubborn “gatekeepers” of the knowledge who don’t want to give it up too easily.

Earlier this week, I went to a couple of sessions here at the International AIDS Conference that renewed my hope for and confidence in the right kind of “participation.” Meaningful Involvement of Women Living with HIV: Women-specific Community-based Research Model brought together a panel of women from Canada who are all involved in community-based research efforts that are led by women living HIV. They discussed the need for women living with HIV to have a prominent voice at the table, and provided best practices such as ….and this one might sound crazy…. remunerating the women as consultants for the time they spend on community-based research projects (while being sensitive to individual situations, not to jeopardize benefits eligibility). They also spoke about ways in which women living with HIV can be trained to play an equal role in all parts of the research process, from defining the questions to writing up the results, not just the part where they open those dreaded gates and provide access to the community so researchers can have better data. Speaking poignantly about the marginalization of her community in the research process, Doris Peltier of the Canadian Aboriginal AIDS Network explained how they have “been researched to death.” Recalling countless documents in which Canadian Aboriginal women living with HIV have been labeled as “underserved, uneducated, vulnerable” and the like, Ms. Peltier pointed out that this is “a very dangerous story, and if that story is being told over and over again, is it beneficial to the community that’s being reported on?” and therefore, “is this the new language of racism, paternalism, and colonialism?” She called upon all of us in the audience to help tell a different story.

Another panel presentation, this one with panelists from South Africa, Nigeria and Zambia, provided us with examples of how country-wide networks of people living with HIV have designed, coordinated, surveyed, interviewed, analyzed data, and used it (!) in efforts to hold governments accountable for protecting PLWHA. The panel, Enhancing Advocacy: Accountability Literacy as a Tool to Reach Universal Access, reviewed the development of several tools such as the Criminalization Scan and the PLHIV Stigma Index, which are being used to gather information about the human rights situation for people living with HIV. Kunyima Banda, of the Network of People Living with HIV in Zambia, spoke about how for her, the process of the research was as important as the result, and helped to empower PLWHA and strengthen their networks. They have since used the results to advocate for protection for PLWHA under the Zambian Constitution; to influence the next Zambian National AIDS Strategic Framework; and to review various other laws and policies, particularly those pertaining to stigma and discrimination. As I listened to this panel, I thought: this is what it’s all about – meaningful participation of the community in research that has direct implication for services as well as human rights work! I left energized and ready to follow their example.

Written by Lina Cherfas