LIVING A MAD POLITICS LIVING A MAD POLITICS: AFFIRMING MAD ONTO-ETHICO-EPISTEMOLOGIES THROUGH RESONANCE, RESISTANCE, AND RELATIONAL REDRESS OF EPISTEMIC-AFFECTIVE HARM By ALISE DE BIE, B.A., B.S.W., M.E.S. A Thesis Submitted to the School of Graduate Studies in Partial Fulfilment of the Requirements for the Degree Doctor of Philosophy McMaster University © Copyright by Alise de Bie, April 2019 McMaster University DOCTOR OF PHILOSOPHY (2019) Hamilton, Ontario (Social Work) TITLE: Living A Mad Politics: Affirming Mad Onto-Ethico-Epistemologies Through Resonance, Resistance, and Relational Redress of Epistemic-Affective Harm AUTHOR: Alise de Bie B.A. in English (McMaster University) Bachelor of Social Work (McMaster University) Master of Environmental Studies (York University) SUPERVISOR: Dr. Christina Sinding COMMITTEE MEMBERS: Dr. Amber Dean Dr. Elizabeth Marquis NUMBER OF PAGES: xxvi, 240 ii Lay Abstract This thesis contributes to Mad theory by recording some of the things I learned while trying to survive in the world, community organizing, the academy, and social work education as a Mad person. To do so, I reflect on the existential and ethical questions I brought to my doctoral studies, the people, texts, and concepts that I found particularly good company during this time, and my Mad methods of living/doing/knowing. Three separate but interconnected articles then follow. These are about (1) moving with loneliness as a Mad student; (2) resisting unmet expectations as service user ethics, and (3) how pedagogical partnerships between students and faculty/staff can cultivate marginalized students’ confidence in their knowledge. The thesis ends with a discussion of its overall contributions to how we conceptualize the psycho-emotional harms produced through sanism/disablism and the ways we understand what Mad knowledge is and how it is generated. iii Abstract Drawing on the theoretical influences of Mad and Disability Studies; philosophical conceptualizations of epistemic injustice (Fricker, 2007), ethical loneliness (Stauffer, 2015), and psycho-emotional disablism (Reeve, 2012; Thomas, 1999; 2007); disability/service user/feminist ethics; a decade of Mad Movement community organizing; as well as autobiographical illustrations and empirical data from two collaborative research projects, this thesis describes my efforts to live a Mad politics in the community, academy, and social work education. Central to this politics, and to the overall contribution of the thesis, is its focus on (1) the recognition and redress of affective-epistemic harms that are often ignored by legislative/social welfare approaches to in/justice; and (2) the generation and refinement of Mad knowledge/ways of knowing that respond to our own priorities as Mad people, rather than those of mental health systems. It contributes to these areas of Mad Studies theory in several ways: First, by recognizing and politicizing the often ignored affective-epistemic effects of abandonment and neglect Mad people experience from society, including loneliness, anger, resentment, distrust, low expectations of others and lack of confidence. Second, by seeking new conceptualizations (such as epistemic loneliness) and contributing to existing ones (like expectations of just treatment, psycho-emotional disablism) in order to more adequately interpret and attest to these harms and call for their redress. Third, by affirming emergent Mad moral and epistemological frameworks, especially those that manifest in the aftermath of harm and account for ontologies of knowing. Fourth, by developing Survivor/Service User Research approaches to analysis (listening for resonance, everyday iv forms of service user resistance, and ‘quiet’ data) that value affective engagements with data and perceive and respond to Mad onto-ethico-epistemologies in and on their own terms. Ultimately, this work calls for greater relational justice, and an expansion of what we owe each other. v Acknowledgements Following Sara Ahmed’s (2017) work to describe the feminist materials that have accompanied her as a diversity worker, below I name (some of) the people, places, and things that have offered me company as a Mad Studies scholar and contributed to the intellectual conditions needed to write this thesis. I do this as a form of recognition and acknowledgement, and in order to not “eliminate the effort or labor from the writing” (Ahmed, 2017, p. 13). It also offers the reader a map of the epistemological and moral communities within which and with whom the knowledge of this dissertation has been generated. As Rose (2017) writes in the context of Mad /service user epistemological possibilities, “the debates we have and the papers we produce are not the expression of private, individual thought but collective through and through because each contribution is only made possible by previous ones and anticipated ones” (p. 784). Barad’s (2007) recognition of our mutual entanglement takes this even further: Re-membering and re-cognizing do not take care of, or satisfy, or in any other way reduce one’s responsibilities; rather, like all intra-actions, they extend the entanglements and responsibilities of which one is a part. The past is never finished. It cannot be wrapped up like a package, or a scrapbook, or an acknowledgment; we never leave it and it never leaves us behind… There is no singular point in time that marks the beginning of this book, nor is there an “I” who saw the project through from beginning to end, nor is writing a process that any individual “I” or even group of “I’s” can claim credit for. In an important sense, it is not so much that I have written this book, as that it has written me. Or rather, ‘‘we’’ have ‘‘intra-actively’’ written each other... (ix-x) Likewise, the thinking in this thesis is not finished and cannot easily be wrapped up, and is only a small part of my ongoing responsibilities to those named and unnamed here. It does, however, begin to offer a window into (some of) the context and materials that have constituted ‘me’ (right now) and this thesis. This list is inevitably incomplete. vi I was introduced to Mad Studies by Geoffrey Reaume in the fall of 2008, when I showed up in his Mad People’s History class at York University (a course he describes in Reaume, 2006). The reason I appeared there was because my then Master’s program adviser in the Faculty of Environmental Studies, Bonnie Kettel, encouraged me to enroll, and because Clare Freeman, my third year BSW placement supervisor in Hamilton and former student of the MES program, opened up the possibility of exploring ideas outside of social work and recommended that I go there. At the time, I was employed as a crisis worker at the mental health organization where I had completed my fourth year BSW placement and was slowly going crazy (again). I didn’t put the pieces together until later, but Chris Sinding had directed me to the consumer/survivor community writing of Kathryn Church (1995) the year before when she supervised my completion of an independent study in queer autobiographical writing. I had worked with Debbie Jones, a peer leader in Halton region, in the winter of 2008 on a service user-led evaluation of the organization where I worked. This was my first introduction to the idea of ‘consumers’ and ‘recovery’, and to the wider peer movement. These exposures and experiences would eventually converge – but my first recognition of Mad people as a political group, knowledge producers, and forming an area of academic study was in Geoffrey Reaume’s class. I am part of an emerging generation of Mad activists and scholars who have found the Mad Movement via the academy - something that was not possible for the leaders who came before. In that Mad People’s History class, I overheard Jeremiah Bach talking about the Mad Students Society - a group I became involved with, crossing paths with many fierce vii Mad students between 2009-2012. Several of us ended up presenting Mad analyses of LGBTQ mental health research at a Rainbow Health Ontario conference in Ottawa in March 2012 - which I think was my first experience of experiential and collective Mad knowledge generation, and of pesto-based pizza. Engaging in grassroots community organizing without any prior experience doing this was fun, freeing, frustrating - and all that could get me out of bed at the time. My early days in Mad community organizing evolved through the companionship of Elizabeth Carvalho, autisticwolf, the Mad Pride Toronto Organizing Committee (2011- 2013), and subsequently the Peer Recovery Education for Employment and Resilience (PREFER) collective of peer support learners. Adventures with Elizabeth Carvalho were especially important for figuring out (1) how to get me a suitcase library when I was too scared to obtain and use a library card and (2) the many uses of bookshelves - such as for organizing archival remnants of everyday life. Later on, conversations about peer support and Mad movement organizing with Andrea Phillipson, Florence Heung, Chelsea Rothwell, Vaishnavi Yogendran, and Rachel Cooper helped me put into words things I (in relation with others) was coming to know. (Thanks also to Rachel for the proposed dissertation title, This is the Damn Lemonade.) Or, actually, perhaps this is not quite right. My earliest days of hanging out with fellow crazy people and organizing Mad community started with several friends in high school, and then my hospital buddies: Tina, Stuart, Camille, Diana, Mark, Martin, Michaela, Catherine, Bobby-Jo. This included hosting walks through hospital hallways, an adventure to locate ice cream cake and covertly light (unallowed in the hospital) viii candles, my first trip (with Michaela) to LGBTQ Pride and Mad Pride in Toronto. These brief but significant relationships taught me more about care and support than I ever learned through formal social work education. Persimmon Blackbridge’s (1997) Prozac Highway and other queer/Mad personal narratives also structured my imagination of what could be possible in and through Mad community.