Beyond the End or the Means: Co-Theorizing Engagement for HIV Programming and Service Provision

Within health, community engagement is positioned as either a means, or an end. It is often framed as an apolitical, linear, and/or individualistic process, thus eschewing the relational or socio-structural factors that inform it. Although the rhetoric of engagement can be found across multiple policy, program and funding documents, the ways in which engagement is understood (or enacted) are rarely explored. As a fuzzy concept, it regularly morphs across contexts, leading many including those working in the HIV sector to note that engagement is undertheorized. Picturing Participation: Exploring Engagement in HIV Programming, Service Provision and Care is a community-based participatory research project, co-led by a team of community members, staff and academic researchers. It uses case study design and photovoice to explore how stakeholders conceptualize engagement within and across different HIV organizational sites: an AIDS service organization, a youth HIV prevention program and a sub-acute HIV hospital. This dissertation is nested in this larger project; it contains several sole and co-authored elements, including: an introduction, a community-report that provides an overview of key project findings, three stand-alone manuscripts, poetry, photography and installations. The first co-authored manuscript explores how participants use of journey metaphors illustrates their understandings of engagement as relational, temporal, and informed by organizational contexts and stakeholder roles. In the second manuscript, I put youths narratives of non-participation in conversation with decolonial and critical scholarship on the politics of refusal, neoliberalism, will, and the call to participate. This reading demonstrates how not participating can be productively read as a self-determined form of resistance. The last two chapters explore what new conditions of possibility are created for (co)-theorizing engagement if engagement is approached as a beyond. The third manuscript explores how my theoretical conceptions as a researcher/facilitator inevitably shaped the design and implementation of the methods used. I explore the methodological opportunities of bridging photovoice with site-specific installations, and working with the crafted-nature of images. The discussion proposes a new way of theorizing engagement as a dynamic, affective and pedagogical (and thus relational and ethical) process. It shares a researcher-produced installation as a site to reflect on the opportunities and tensions of doing collaborative, interdisciplinary doctoral work.