Come along to The Counting House at 7pm for talks by Eli Anderson and Dina Poursanidou. Enjoy meeting someone new and sharing a crust of bread

Name of speaker:

Dina Poursanidou
(This talk draws on endless conversations with Helen Spandler who I am deeply grateful to for helping me reflect on difficult matters…)

Subject:

Mental health/Madness

Title of talk:

Mad knowledge, difficult knowledge: Critical reflections on politics, identification and ambivalence

A few words about you and your passion:

My name is Dina Poursanidou – I am Greek, I am a researcher at Manchester University, I have been using mental health services since 2008, and I am a member of the Asylum magazine editorial collective. I experience profound ambivalence towards my mental health service use and my mental illness (for want of a better term) experiences with their catastrophic consequences for every aspect of my life. If madness is a dangerous gift that users of psychiatric services need to embrace, as Mad Pride advocates, then I am yet to embrace my own madness. I have had 20 years of psychotherapy which definitely enabled a great deal of personal development and transformation for me but I often wonder about the huge cost of my ‘post-traumatic growth’…

For Dina’s Blog on Asylum, the Magazine for Democratic Psychiatry

To be able to stand not knowing long enough to let something alive take shape…(Lynda Barry, 2008, p.135)

Outline of the issues my talk will touch upon:

My talk will seek to interrogate the concept of ‘mad knowledge’ by exploring a number of questions and issues, such as

i)    Semantics, meanings and language – What is ‘mad knowledge’? The complexity of reaching an adequate definition; Is ‘psychiatric survivor knowledge’, for example, an adequate definition? What are the politics of language and identification (identity politics) at play here? Is the concept of ‘mad knowledge’ reflecting an oxymoron given that madness is associated with irrationality and the lack of reason, whereas knowledge is associated with reason and rationality? Mental health service users are frequently treated as though their knowledge is suspect because they are seen as irrational and lacking reliable perceptions and judgement (Beresford, 2005, Epidemiologia e Psichiatria Sociale, p.7); is the notion of the service user researcher a contradiction in terms too, given that mental health service users are often deemed as irrational and research/science is thought of as the acme of rationality (Rose, 2009, This is survivor research)?
Representing madness and mad knowledge – The experience of madness/acute mental distress as something ‘unsayable’,  as ‘something before which speech dies’; we may need different forms of representation that would help overcome the limits of rational language/discourse when it comes to these kinds of experiences; the images produced by Alfred Kubin as the most effective medium to represent my experience of madness
ii)    The politics of mad knowledge; How is mad knowledge produced, constructed and negotiated? Individual and collective dimensions of mad knowledge (individual suffering and distress; history of the psychiatric survivor movement); ‘Mad knowledge’ as a quintessentially psychosocial concept; Psychically unique and socio-culturally determined elements of mad knowledge; Mad knowledge as experiential, embodied, tacit knowledge stemming from the direct, subjective, lived experience of mental distress; ‘insider knowledge’; mad knowledge, first person narratives of madness/mental health testimonies, and survivor poetry
iii)    Mad knowledge and expertise – psychiatric survivors as ‘experts by experience’? What are psychiatric survivors experts on? Are they experts on madness? But how can one be an expert on madness if madness is something that cannot be known and understood in its entirety, something that cannot be easily articulated? And are we not all experts through our experiences? If so, why would we need the presumed epistemological privilege of being a mental health service user to claim such expertise?
Different kinds of expertise (lay/patient expertise vs. professional and clinical expertise) – expertise by experience vs. expertise by profession (Louise Pembroke); Is mad knowledge a special/unique form of knowledge (linked to the presumed epistemological privilege of psychiatric survivors) or a different form of knowledge involving different understandings and respect for direct experience? ‘alternative knowledge’ produced by service user/survivor research (Rose, 2009, This is survivor research); ‘Service User Experts’ and ‘Expert Patient Trainers’: the use of personal trauma as a qualification by professionalised lay experts?
Service user representative positions that have opened up in the wake of what we describe as the ‘participatory turn’ in contemporary forms of governance, that we think are aimed at flattening traditional authority structures in mental healthcare but that often merely reinscribe such power structures at tacit levels; the creation of what may be perceived as an ‘elite’ of professionalised mental health service users (‘experts by experience’) who seem to be functioning as representatives on every single government mental healthcare committee
Service user involvement /consumer participation in planning and evaluating mental health services: Emancipation or Appropriation?
Cooke and Kothari (2001) have argued that service user involvement and participation practices have become so incorporated that they are best viewed as part of the overarching system connecting psychiatric surveillance with societal governance (Cooke, B. & Kothari, U. 2002 Participation the new tyranny? Zed Books, London)
iv)     Where and how is mad knowledge validated/celebrated/privileged and contested/vilified?  Perceived credibility of mad knowledge in different contexts; The neoliberal discourse of mental health service user involvement /consumer participation in planning and evaluating mental health services and in mental health services research – rhetoric and reality; The psychiatric survivor (Mad) movement;  Mad Pride and romanticisation of distress? The Icarus Project: Navigating the Space Between Brilliance and Madness; The Mad People’s History course (School of Disability Studies, Ryerson University, Toronto); Asylum magazine (The magazine for  democratic psychiatry); Valuing mad knowledge in teaching and research (COMENSUS in the University of Central Lancashire; mental health service user active involvement in research/mental health service user controlled research and knowledge production); ‘The shorter the distance between direct experience and its interpretation, then the less likely the resulting  [survivor -produced] knowledge is to be inaccurate, unreliable and distorted’ (Beresford, 2005, Epidemiologia e Psichiatria Sociale, p.4); Valuing  mad knowledge in mental health research as a fundamental shift from traditional research approaches/paradigm shift; The Hierarchy of Evidence (the opinion of service users as Type V evidence at the lowest rank of the hierarchy; Randomised Controlled Trials representing the research ‘gold standard’); Mental health service user-led research (and hence service user/survivor knowledge) as lacking robustness and rigour (Comments by the editor of the British Journal of Psychiatry, 2002), introducing bias and not having the same credibility, validity, reliability and legitimacy/status as more traditional mental health research; The devaluing/invalidation and marginalisation of experiential knowledge by traditional research approaches vs. Mental health service user-led research recognising the importance and value of the subjective in research and knowledge formation, of service users being involved in research because of their direct personal experience of the issues under study-this flies in the face of research values of ‘neutrality, objectivity and distance’; Evidence-based mental health research (and knowledge) – informed by positivist values and the medical model- regarded as ‘neutral/value-free, balanced, detached, and scientific’ (Beresford, 2005, Epidemiologia e Psichiatria Sociale, p. 5), placing a high value on ‘objectivity’ (ib., p.6); ‘The essentially partisan and political nature of [service user research and] user controlled and emancipatory research (and the knowledge it produces), committed to  improving people’s lives, continue to be seen by many mainstream researchers as weaknesses…’ (Beresford, 2005, Epidemiologia e Psichiatria Sociale, p. 6); Juxtaposing mad knowledge with the Diagnostic and Statistical Manual (DSM) discourse and the technological/technocratic knowledge paradigm it is underpinned by (Bracken et al., 2012);  Critique of psychiatric survivor identity (and knowledge) as privileging vulnerability and victimisation (Kenneth McLaughlin, 2012)
v)    Mad knowledge as difficult (Pitt and Britzman, 2003), unsettling and troublesome knowledge – How can we bear the contact with the inchoate and the discomfort and terror it generates?  How can we tolerate the collapse of rationality and the uncertainty of not knowing? Discomfort as a form of knowledge? Mad knowledge as a ‘threshold concept’ (Meyer and Land, 2003)? Mad knowledge and negative capability
vi)    Epilogue-Dina’s personal stance; Where I come from (mental health service user and professional researcher/service user researcher); struggling with the contradictions, tensions and complexities relating to mad knowledge; strong ambivalence towards the notion of mad knowledge;  the need to leave the dialogue open; ‘madness as a dangerous gift’, i.e. the lived experience of mental distress and mental health service use (and the knowledge stemming from that),  being a bonus, a gift, something potentially valuable in the context of mental health research for example, but at the same time being something excruciatingly  painful that Dina wishes she did not have…
Mad knowledge as meaningful knowledge that needs to be honoured and valued in the context of people’s lives but not romanticised/idealised and certainly not denigrated/degraded; a response to the splitting that  prevails in society with respect to mad/survivor knowledge – a) romaticisation/idealisation by Mad Pride and those who equate madness to mystical states and creative brilliance  or b) denigration/degradation  by biomedical psychiatry with its emphasis on correcting the broken mind, and by those who consider madness/mental illness  as something to be ashamed of and certainly nothing to learn from.
Biomedical psychiatry and its tools and discourses/knowledge (eg the Diagnostic and Statistical Manual used to impose diagnoses) as ‘colonising’ forces that pathologise and medicalise mental distress and the problems of living, as well as marginalise those experiencing such distress and the knowledge stemming from that experience (mad/psychiatric survivor knowledge); ‘psychiatric colonization’; to what extent mad/psychiatric survivor knowledge has the potential to function as a ‘decolonising’, emancipatory and transformative force – if resistance and a critical stance (to oppression) is at the heart of decolonisation?
‘Recovery has been a process of healing and transformation for me. I am not the same person I was before I went crazy. My madness has been a kind of fire through which I have walked and through which I have been changed’ (Deegan, 2002, p. 17) – Deegan, P. E. (2002) ‘Recovery as a Self-Directed Process of Healing and Transformation’, Occupational Therapy in Mental Health,17:3-4, 5-21