Critical qualitative research on 'madness': knowledge making and activism among those designated 'mad'.

Diana Rose

doi:10.12688/wellcomeopenres.16711.1

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.

Highlights

Why don’t those involved with mental health research policy, researchers and members of the public themselves listen to the voice of those with ‘lived experience’, to use a topical term? Many state that they are doing this, and multi-authored research papers increasingly claim to include people with ‘lived experience’ among the authors (Holmes et al, 2020)
I here set out an alternative, based on the developments in theory and method utilised in a project which aimed to explore the ways in which people designated ‘mad’, the mentally ill, survivors and people with psychosocial disabilities, are developing new forms of knowledge about their distress, the forms of support associated with that knowledge and wider questions concerning their relations with ‘mainstream’ academic research
In this paper I have introduced the thinking in EURIKHA around the knowledge produced by people subjugated on grounds of their epistemic competence, subjugated individually, ethically and as a group

Summary

Junko Kitanaka Japan

Any reports and responses or comments on the article can be found at the end of the article. The proposal for the project stated that it would be ‘global’ in scope This turned out to be an impossible task because of team dynamics, and due to differences with regard to the Global South, where positions on racialisation became entrenched in a very strong way. This has had the consequence that a single background paper became unfeasible. While other members of the team contributed to the thinking behind this paper, the synthesis which this paper represents is mine and I take full responsibility for any errors The point of this short paragraph is to be transparent about the circumstances surrounding this work Full details of the researchers involved in the EURIKHA project can be found at www.eurikha.com

Introduction

Conclusions

American Psychiatric Association