Infrastructures of knowing – Disability in care, governance and STS

Abstract

This thesis investigates how infrastructures of knowing organise voice, legibility, and concerns in sites of disability governance, care, and knowledge-making. Intellectual disability, and in particular profound intellectual and multiple disabilities, serves as a critical lens for engaging questions of mediation, uneven representation, and selective visibility. Empirically, the thesis moves across welfare governance, participatory quality work, user involvement initiatives, ethnographic encounters in disability care, and STS publication ecologies. The analysis draws on ethnographic observation, semi-structured interviews, document analysis, and a reflexive scoping review of disability-related STS scholarship. Theoretically, infrastructures of knowing are approached not as settled systems or neutral supports for the production and transmission of knowledge, but as ongoing arrangements that shape how actors, experiences, and concerns are rendered present and received. The thesis shows that such infrastructures take form through the entanglement of formal arrangements, including documents, standards, and procedures, with more diffuse dynamics such as tacit understandings, habits of attention, and affective orientations. It further suggests that some of their most consequential work takes place through dynamics that appear self-evident and do not readily stand out as infrastructure. Across the studies, intellectual disability repeatedly appears in arrangements where the forms through which it is known remain at some distance from the lives and conditions they concern. What this brings into view is not only what intellectual disability comes to mean once it is already present, but the uneven conditions under which it becomes a matter of concern in the first place. The thesis contributes conceptually to STS by extending infrastructure studies through a sustained engagement with work on affect, orientation, and attachment; empirically by bringing intellectual disability more centrally into view across governance, care, participation, and scholarship; and reflexively by approaching STS itself as an infrastructure of knowing in its own right.