Unmaking madness: Exploring collective first-person epistemology

Abstract

This PhD research investigates the potential emergence of a new paradigm in understanding and approaching madness that is grounded in the first-person, collective knowledge of people who have personal experience of madness and who oppose its biomedical explanation. Unlike established participatory approaches in mental health and psychiatric research that involve experiential perspectives as subjective, add-on components, this inquiry takes first-person knowledge as a departure point and centers it throughout the research process. The notion of experiential knowledge in this thesis also extends to the researcher’s background. The emphasis is on the process of merging diverse first-person perspectives into a collective body of knowledge of madness that can offer a counter-discourse to the dominant, biomedical one. The investigation was undertaken in two main phases. In the first phase, I analysed a selection of written sources (conceptual, analytical and research work) authored by people who have first-person experience of madness and its treatment, and whose work challenges the biomedical paradigm. In the second phase, the analysis of written sources was used to generate questions for interviews with a subsample of the authors and activists from phase one. Fourteen people from six countries participated in this phase. Documenting the process of knowledge generation in these interviews is the central part of this inquiry. This thesis contributes to, and can be situated within Mad Studies, an emerging field of inquiry and activist scholarship. The overall approach is informed by the key values and principles of emancipatory disability research and, more specifically, by the key values and principles of survivor-controlled research in mental health. The research process is of equal importance to the findings. This thesis offers a methodological and ethical example of the value of solidarity, dialogue and working with difference whilst searching for connections and generating knowledge of complex human experiences.