Rose Diana
Research School of Social Sciences and Department of Sociology, College of Arts and Sciences, Australian National University, Canberra, ACT2600, Australia.
Wellcome Open Res. 2021 May 6;6:98. doi: 10.12688/wellcomeopenres.16711.1. eCollection 2021.
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 - 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.
本文阐述了一个项目的背景,该项目旨在梳理数百年来一直被噤声的人群——“疯子”(“mad”)在全球所产生的知识。“mad”这个词在历史上带有贬义,但如今正被重新诠释。认为那些被认定为“疯子”的人能够产生知识,这种观点很新颖:人们通常认为“疯子”缺乏理性,没有能力产生知识;他们遭受着认知不公。在过去20年里,患者参与研究的情况有所增加,但我们缺乏能够挖掘此类知识的方法框架。该项目的一个目标是让“疯子”说出他们的知识,通常是实践知识。为此我们必须创新方法。核心在于,我们拒绝理论与方法的区分,因为在所有研究中它们始终相互交织。因此,背景文件中通常归入“方法”范畴的内容,实则蕴含着隐含的概念化。我们在北美、英国、澳大利亚、新西兰以及东欧和西欧进行了48次访谈。我们认为,这些访谈的所有方面都与该领域探索性研究的常规情况截然不同。精神病学在此并非核心——只有当它出现在我们参与者的话语中时才会被提及;它存在于物质和象征空间之中。我们还试图摆脱药物和心理治疗的个体化疗法,因为这些疗法使参与者脱离了他们所处的现实情境。精神病学之所以被提及,还因为它所做的事情——与患者的生活世界打交道。我们进而呼吁在各个层面重新审视疯狂的情境。该项目由用户主导,所有研究人员都有过痛苦经历以及对此的应对经验。后续论文将进一步阐述并展示这种方法。