I volunteered with the Hive Mutual Support Network because of its close fit with my anthropological focus – grassroots alternatives to the mental health system. And while I’ve shared how my own experiences with psychiatry connect to this work in previous posts, my final week here saw the personal, political and academic (e)merge more clearly. For the Hive’s August potluck, I presented and facilitated a discussion on Survivor-Controlled Research, a form of participatory research done by those who’ve experienced mental health services. Through this, and the rest of the summer’s work, research has begun to take on a meaning for me which feels critical to flesh out in this last post.

Looking out the window of the Hive space.

For context, many members of the Hive (including myself) who’ve interacted with psychiatry have ultimately, if not initially, found it unhelpful, oppressive, or dehumanizing. Mental health responses and discourse (whether diagnosis, medication, or anti-stigma campaigns) caused more suffering and isolation than whatever they were meant to address. In turn, we’ve generated new meanings and identities, politics and movements. These can be at once liberating and further marginalizing – not only by having had experiences labeled as “mental illness” in the first place, but by understanding them and their medical response differently. What’s more, stories that credit treatment with survival – rather than of having survived treatment itself – dominate social narratives about these issues.

Yet as both systems advocacy and radical activism in the last half-century attest, survivor voices matter. Not because other, more visible ones don’t, and not despite survivors’ relative obscurity, but because of it. They matter for a society that has been in a “mental health crisis” since long before the notion of “mental health” existed, and that, despite paradigm shifts, has been broadly unsuccessful in its responses to madness and distress. They matter because they implicate our understanding of human rights and the human condition. And by listening, we have everything to gain.

The Hive is one expression of these voices, and an example of another way: through mutual aid and open leadership, it shifts the locus of power and mode of change. By creating spaces for resistance and alternative discourse, it raises consciousness and transforms the singular into the collective. And by mapping psychiatric intervention and the experiences it claims onto larger systems, it looks beyond the biological and individual. In many ways, the Hive’s structure diagnoses the very social and institutional problems to which it is a response.

At the summer’s final potluck, these personal and political threads merged with the academic. I shared with community members about Survivor-Controlled Research (SCR), a kind of participatory action research that is specifically conceived of and executed by those who have experienced madness, distress and/or mental health services. It emphasizes developing our collective knowledge (rather than knowledge “about” us), disrupting researcher-subject roles and power dynamics, and troubling notions of “neutrality” and “objectivity” as preconditions for making truth claims.

I started learning about SCR last semester and sensed its potential benefit for my own research. In line with the reflexive turn in ethnography, it offers a further check on the distancing gaze and researcher-subject divide in psychiatric anthropology, which, though distinct from clinical research, can still replicate its dynamics. Moreover, its grounding in feminist standpoint theory advocates a more complete (and different) social knowledge, generated by those who’ve experienced oppressive structures themselves. As someone who struggles with/straddles this divide, such perspectives on knowledge production are critical to theorizing my own work.

I brought this presentation to the Hive potluck to hear their thoughts. With SCR in mind, we brainstormed about the goals of research, what motivates its undertaking, as well as what the community might want to ask and how.

Research ideas from the potluck.

While no concrete plans emerged, this was a fitting end to a summer that has produced as many questions as it has answers. I look forward to sitting with the notes over this next year. Most importantly, by engaging in participant-observation – and with my own positions and privileges – I’ve learned lessons that have been both painful and instructive. The future of my research is undecided, but this process has offered a clearer vision of its challenges and possibilities.