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Paper short abstract

By shifting attention from participation to the epistemic conditions that make experiences speakable and institutionally actionable, this paper contributes to ongoing discussions about inclusion, representation, and the limits of institutionalized forms of involvement.

Paper long abstract

Debates on patient and public involvement have focused on how patients can be included in knowledge production, decision-making, and research governance. STS scholars have productively troubled these developments, showing how participation frameworks reproduce hierarchies of expertise, privilege certain forms of knowledge, and professionalize patient representatives in ways that narrow participation (e.g., Epstein, 1996; Martin, 2008; Callon, Lascoumes, & Barthe, 2009). It has also been demonstrated that participation depends on the articulation of issues around which publics can gather, and how certain concerns fail to achieve such articulation (Marres, 2007).

This paper takes a well-trodden path upstream to ask a familiar question: what forms of experience remain difficult to articulate in the first place? Studies of invisible labour show how crucial domains of activity evade formal recognition because they are embedded in routine infrastructural arrangements (Star & Strauss, 1999). Drawing on participatory research conducted in a forensic psychiatric clinic, including a patient advisory council, the paper examines a domain of everyday work that profoundly shapes patients’ lives yet lacks a stable language through which it can be recognized or contested. While formal discussions of coercion focus on legally defined interventions, patients’ ongoing experiences are structured by far more mundane practices. Issues raised in the patient council frequently appear “small,” yet closer examination shows that they touch on fundamental aspects of personhood. They are thus simultaneously too minor to easily become agenda items and too fundamental to be comfortably contained within institutional participation frameworks.