Rethinking "Patient Testimony" in the Medical Humanities: The Case of Schizophrenia Bulletin's First Person Accounts.

Illness narratives are the object par excellence of classical medical humanities enquiry. Thanks in part to the wider ‘narrative turn’ in the humanities and social science (Bamberg), interest in narratives of/and illness has been growing steadily across a number of fields (Woods, “The Limits of Narrative”), including medical anthropology (Mattingly and Garro; Littlewood), medical sociology (Frank, The Wounded Storyteller; Atkinson “Illness Narratives Revisited”), and the philosophy of psychiatry (Fulford et al.). While the medical humanities draw energy and insight from this work, they are perhaps distinctive in bringing social-scientific and literary-philosophical approaches if not together then at least into conversation. Medical humanities researchers with training in the social sciences typically view illness narratives as data to be solicited through interviews and then transcribed, ‘coded’ and analysed using rigorous methodologies, many of which are aided by sophisticated computer programmes. As the field widens to include work that is more critically and politically engaged (Atkinson et al.; B. E. Lewis), temporal and spatial situatedness, and the complex interplay between ‘individual’ and ‘collective’ narratives of illness (Atkinson and Rubinelli), are also coming into focus. A second stream of medical humanities researchers trained in literary and cultural studies approach the study of illness narrative from a different perspective and so with different tools. Here, textual and intertextual, aesthetic and historical detail come sharply into focus, with close-readings of lengthy and polished autobiographical, biographical and fictional accounts of illness teasing out the complexities of these projected worlds (Belling; Ingram et al). Where these divergent approaches to illness narrative might otherwise remain largely indifferent to each other’s existence, their intersection in the field of medical humanities affirms shared interests in treating the messy and complex subjective experience of illness as something distinct from the biological functioning of disease, and so in ensuring that these experiences and the ways we come to communicate them are given the recognition they deserve. Mental illness and distress present a particular set of complications for medical humanities work on illness narrative (Woods, “Beyond the Wounded Storyteller”), and nowhere is this more obvious than in the case of schizophrenia. Schizophrenia names some of the most profound transformations in human experience (Sass, “Self and World in Schizophrenia”; Kean, “Silencing the Self”) even if its status as illness, disease, disability or diagnostic label is still strenuously debated.1 The constellation of schizophrenic symptoms includes experiences of depersonalization and derealisation, hallucinations and delusions, and disorders in the realms of perception, sensation, cognition and emotion. Schizophrenia affects at least one per cent of the global population (Metzl x-xi, 187-8), and yet with the exception of a handful of much-celebrated autobiographies (Schreber; Renee; Greenberg; Saks), narratives of schizophrenia are conspicuous by their absence from public discourse. One explanation for this is that schizophrenia has been construed as eliding, resisting, or opposing narrative. The idea that schizophrenia is somehow ‘anti’-narrative has developed across five domains: (i) in psychiatry, where the concept of schizophrenia is, as Barrett has argued, profoundly associated with dementia, degeneration and deterioration, states from which no coherent storytelling or meaning making is considered possible (Barrett, “Degeneration”; “Disintegration and Division”); (ii) in neuropsychology, through studies investigating schizophrenia’s assault on the cognitive and affective underpinnings of narrative capacity (Gallagher; Gruber and Kring);2 (iii) in the philosophy of psychopathology, particularly in work focussing on the breakdown in narrative identity and the dialogical self (Lysaker and Lysaker; Phillips; Thomas; Mackenzie and Poltera); (iv) in an aesthetic realm, where the ‘mad narratives’ or anti-narratives of schizophrenia have been celebrated for their failure to conform to the humanist conventions of either nineteenth-century realism or literary autobiography (Sass Madness and Modernism); and (v) in the socio-political domain, wherein stigma and outright discrimination have been seen to muffle if not completely silence those with stories of schizophrenia. With this in mind, the analysis of schizophrenia narratives – whatever these might be – acquires some urgency as a medical humanities undertaking, especially if the field is to break new ground in achieving the moral and political objectives of bringing first-person perspectives of health and illness to the fore. Such an undertaking is, however, fraught with difficulties, especially for the researcher who refuses to regard narratives as mere objects of analysis. Where, then, to begin? This article addresses arguably the most prominent – if still desperately under-researched – archive of schizophrenia narratives: the “First Person Accounts” of Schizophrenia Bulletin. Schizophrenia Bulletin was founded by psychiatrist Loren Mosher – then chief of the US National Institute of Mental Health (NIMH) Centre for Schizophrenia Studies – in 1969. Today, it is one of the highest ranked academic journals publishing scientific research on psychosis. Interdisciplinary by necessity, the journal sees itself as engaged in acts of translation across the psychiatric field, bringing neuroscientists, clinicians, psychologists and geneticists into dialogue. In 1979, ten years after its launch, Schizophrenia Bulletin started to include among its experts people with a subjective experience of schizophrenia, publishing short pieces with the twin aims of deepening researchers’ insights into “the issues and difficulties confronted by consumers of mental health care,” and responding to “a continuing need for experiences to be shared among mental health professionals, families, and current and former patients” (qtd. in DuVal 631). Of the 119 First Person Accounts published over the last thirty three years, close to three quarters were written by ex/patients, the remainder by family members; twice as many authors identified themselves as women compared to men;3 seventeen people chose to publish anonymously; two withdrew their accounts following publication; and almost one quarter of authors worked or had worked in some aspect of mental health services. This article does not offer the kind of in-depth textual reading of these accounts befitting of a more conventional literary inquiry, nor will it undertake a comprehensive ‘coding’ of these narratives to identify their key themes and variations. Indeed, what follows is less directed towards content than towards the enterprise of analysis itself; the question posed is deceptively simple, but no less urgent for being so. It is: how should these First Person Accounts be read? The normative thrust of this question is of particular interest when writing for and from a field which includes on the one hand those with a strong investment in positively influencing the practice of healthcare, and those who on the other have debated questions of reception, reader response, and authorial authority for over half a century. “By whom? In what context? And for what purpose? ” are questions that must also be asked. With the overall aim of laying the conceptual groundwork for future academic analyses of this archive, this article proceeds through three linked discussions. Part one addresses the paratextual dimensions of the First Person Accounts and the editorial policies shaping their publication. Part two explores the nature of the contract implied between author and reader in what I call a ‘genre of insight. ’ After a narrative interlude, the final section of this article presents four possible models or modes of reading the First Person Accounts and asks what consequences and commitments arise from their adoption.