Critical qualitative research on ‘madness’: knowledge making and activism among those designated ‘mad’

Abstract

This paper charts the background to a project which aimed to map the knowledge being generated across the world by people silenced for centuries – the ‘mad’: a term with derogatory historical resonances but which is now being reclaimed. The idea that those designated ‘mad’ can produce knowledge is novel: ‘mad’ people are imagined as lacking rationality, and incapable of producing knowledge; they are subject to epistemic injustice. Patient engagement in research has grown in the last 20 years but we lack methodological frameworks through which such knowledge can be surfaced. One goal of the project is to let the mad speak their knowledge, often practical knowledge. To do this we had to innovate methodology. Centrally, we refuse the distinction between theory and method for these are constantly intertwined in all research. Thus, what typically comes under ‘Method’ in background papers is infused with implicit conceptualisation. We carried out 48 interviews in North America, England, Australia, New Zealand, and Eastern and Western Europe. We argue all aspects of these interviews are radically different than is usual for exploratory research in this area. Psychiatry is not central here – it is present only when present in the words of our participants; situated in material and symbolic spaces. We also seek to move away from the individualising therapies of medicines and psychological treatment because they strip participants from their situated realities. Psychiatry enters also because of what it does not do – engage with the life world of its patients. We call then for ‘recontextualisation’ of madness at all levels. The project was user-led and all researchers had experienced distress and responses to it. Future papers will develop and demonstrate this approach.