The Edinburgh Companion to the Critical Medical Humanities 9781474400046, 9781474400053, 9781474414555

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The Edinburgh Companion to the Critical Medical Humanities

General Editors Anne Whitehead and Angela Woods

Associate Editors Sarah Atkinson, Jane Macnaughton and Jennifer Richards

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Edinburgh University Press is one of the leading university presses in the UK. We publish academic books and journals in our selected subject areas across the humanities and social sciences, combining cuttingedge scholarship with high editorial and production values to produce academic works of lasting importance. For more information visit our website: www.edinburghuniversitypress.com © editorial matter and organisation General Editors Anne Whitehead and Angela Woods and Associate Editors Sarah Atkinson, Jane Macnaughton and Jennifer Richards, 2016 © the chapters their several authors, 2016 Edinburgh University Press Ltd The Tun – Holyrood Road, 12(2f) Jackson’s Entry, Edinburgh EH8 8PJ Typeset in 10/13 Adobe Sabon by IDSUK (DataConnection) Ltd, and printed and bound in Great Britain by CPI Group (UK) Ltd, Croydon CR0 4YY A CIP record for this book is available from the British Library ISBN 978 1 4744 0004 6 (hardback) ISBN 978 1 4744 0005 3 (webready PDF) ISBN 978 1 4744 1455 5 (epub) The right of Anne Whitehead, Angela Woods, Sarah Atkinson, Jane Macnaughton and Jennifer Richards to be identified as the editors of this work has been asserted in accordance with the Copyright, Designs and Patents Act 1988, and the Copyright and Related Rights Regulations 2003 (SI No. 2498).

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CONTENTS

List of Illustrations Acknowledgements

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Introduction Anne Whitehead and Angela Woods

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Part I: Evidence and Experiment 1 Entangling the Medical Humanities Des Fitzgerald and Felicity Callard 2 Modelling Systems Biomedicine: Intertwinement and the ‘Real’ Annamaria Carusi 3 Holism, Chinese Medicine and Systems Ideologies: Rewriting the Past to Imagine the Future Volker Scheid 4 The Lived Genome Christoph Rehmann-Sutter and Dana Mahr 5 Getting the Measure of Twins William Viney 6 Paper Technologies, Digital Technologies: Working with Early Modern Medical Records Lauren Kassell 7 How Are/Our Work: ‘What, if Anything, is the Use of Any of This?’ Jill Magi, Nev Jones and Timothy Kelly 8 Afterword: Evidence and Experiment Patricia Waugh Part II: The Body and The Senses 9 Picturing Pain Suzannah Biernoff 10 The Body Beyond the Anatomy Lab: (Re)addressing Arts Methodologies for the Critical Medical Humanities Rachael Allen

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11 Touch, Trust and Compliance in Early Modern Medical Practice Cynthia Klestinec 12 Reframing Fatness: Critiquing ‘Obesity’ Bethan Evans and Charlotte Cooper 13 Reading the Image of Race: Neurocriminology, Medical Imaging Technologies and Literary Intervention Lindsey Andrews and Jonathan M. Metzl 14 Touching Blind Bodies: A Critical Inquiry into Pedagogical and Cultural Constructions of Visual Disability in the Nineteenth Century Heather Tilley and Jan Eric Olsén 15 The Anatomy of the Renaissance Voice Jennifer Richards and Richard Wistreich 16 Breathing and Breathlessness in Clinic and Culture: Using Critical Medical Humanities to Bridge an Epistemic Gap Jane Macnaughton and Havi Carel 17 Morphological Freedom and Medicine: Constructing the Posthuman Body Luna Dolezal 18 Afterword: The Body and the Senses Jo Winning Part III: Mind, Imagination, Affect 19 Medical Humanities and the Place of Wonder Martyn Evans 20 Man’s Dark Interior: Surrealism, Viscera and the Anatomical Imaginary Edward Juler 21 Narrative and Clinical Neuroscience: Can Phenomenologically Informed Approaches and Empirical Work Cross-fertilise? Jonathan Cole and Shaun Gallagher 22 On Pain of Death: The ‘Grotesque Sovereignty’ of the US Death Penalty Lisa Guenther 23 Voices and Visions: Mind, Body and Affect in Medieval Writing Corinne Saunders 24 Victorian Literary Aesthetics and Mental Pathology Peter Garratt 25 Aphasic Modernism: Languages for Illness from a Confusion of Tongues Laura Salisbury 26 Trans-species Entanglements: Animal Assistants in Narratives about Autism David Herman 27 Afterword: Mind, Imagination, Affect Felicity Callard Part IV: Health, Care, Citizens 28 Medical Migration and the Global Politics of Equality Hannah Bradby

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contents 29 Language Matters: ‘Counsel’ in Early Modern and Modern Medicine Ian Sabroe and Phil Withington 30 Fictions of the Human Right to Health: Writing against the Postcolonial Exotic in Western Medicine Rosemary J. Jolly 31 Culture in Medicine: An Argument against Competence Rebecca J. Hester 32 The Roots and Ramifications of Narrative in Modern Medicine Brian Hurwitz and Victoria Bates 33 Broadmoor Performed: A Theatrical Hospital Anna Harpin 34 On (Not) Caring: Tracing the Meanings of Care in the Imaginative Literature of the ‘Alzheimer’s Epidemic’ Lucy Burke 35 Care, Kidneys and Clones: The Distance of Space, Time and Imagination Sarah Atkinson 36 Afterword: Health, Care, Citizens Stuart Murray Notes on Contributors Index

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LIST OF ILLUSTRATIONS

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A hybrid system of modelling. Author’s own figure. ‘Horror and Agony, copied from a photograph by Dr Duchenne’, from Charles Darwin’s The Expression of the Emotions in Man and Animals Figure 21. Source: . Wolcott’s Instant Pain Annihilator, c. 1863. Source: Library of Congress, Washington DC. No known restrictions on publication. . Richard Dalton, Laocoon and his Sons, Attacked by Sea Snakes. Etching, 1746. Source: Wellcome Library, London. Martyrdom of Saint Sebastian. Oil painting. Source: Wellcome Images. Henry Peach Robinson, Fading Away, 1858. Albumen silver print from glass negatives. Source: . Three miserable men suffering from gout, toothache and influenza sitting around a table. Coloured lithograph from the series Tregears Flights of Humour, no. 36. Source: Wellcome Library, London. A young soldier lies dying in a woman’s arms on a deserted battlefield. Colour halftone, c. 1915, after Dudley Tennant; 32.7 × 45.3 cm. Published by S. H. & Co. Ltd, London and Manchester. Source: Wellcome Library, London. Portrait of Private Kearsey, by Henry Tonks, 1917. Pastel. © Hunterian Museum at the Royal College of Surgeons. The Anatomy Lab, 2012. © Rachael Allen. The Anatomy Lab, 2012. © Rachael Allen. The Rites of Passage, 2014. Pencil on paper, wooden frame, soil from Zakynthos. © Rachael Allen. (Detail) Unclassified (BMJ 207–11). Extracts from British Medical Journal, 2012. Pencil on paper. © Rachael Allen.

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list of illustrations 10.5 Laminectomy: the back of five vertebrae removed to relieve pressure on the spinal cord in a patient who presented with a sudden-onset paralysis, 1997. © Max Aguilera-Hellweg. 10.6 Harvest for cornea transplant, 1997. © Max Aguilera-Hellweg. 10.7 Cranofacial reconstruction in an adult with Crouzon syndrome, 1997. © Max Aguilera-Hellweg. 10.8 Arm of a 23-week-old foetus, as exhibited to photographer by surgeon during open prenatal surgery, investigative clinical trial, to correct spina bifida, 1997. © Max Aguilera-Hellweg. 10.9 (di)ssection, two-hour performance, 2013. © Rachael Allen. (di)ssection is the performance of a (dead) rabbit dissection, instructed by Grants Dissector (12th edition). The performance explores the problematic nature of executing human dissection to acquire the mastery of principle anatomy, reflected in the increasing decline of dissection practised in anatomy education: literally, the ‘death’ of dissection. 10.10 The Body is a Big Place, 2011, Helen Pynor and Peta Clancy. Heart perfusion performance still. Left: Helen Pynor. Right: John Headrick. Five-channel video projection, heart perfusion device, single-channel video on monitor, soundscape by Gail Priest. Collaborating scientists: Professor John Headrick and Dr Jason Peart, Heart Foundation Research Centre, Griffith University, Queensland, Australia. Photograph: Geordie Cargill. 10.11 The Body is a Big Place, 2011, Helen Pynor and Peta Clancy. Five-channel video projection, heart perfusion device, single-channel video on monitor, soundscape by Gail Priest. Collaborating scientists: Professor John Headrick and Dr Jason Peart, Heart Foundation Research Centre, Griffith University, Queensland, Australia. Photograph: Peta Clancy and Helen Pynor. 11.1 The author portrait of Andreas Vesalius, De Humani Corporis Fabrica (Basle: Oporinus, 1543). Courtesy of the Countway Library for the History of Medicine, Harvard University. 11.2 The author portrait of Iulius Casserius, Penthaesteseion, hoc est de Quinque Sensibus Liber (Venice: Nicolaum Misserinum, 1609). Courtesy of the Countway Library for the History of Medicine, Harvard University. 11.3 Anna Morandi, Self-portrait. Photograph. Courtesy of the Poggi Museum, Bologna, Italy. 13.1 Comparative PET scans with accompanying labels indicating ‘type’. First published in Newsweek as ‘PETting the Brain’ in the article ‘Mapping the Brain’ (19 April 1992). The first and second images are © 1992 R. J. Haier and M. S. Buchsbaum; the third is © 1992 M. S. Buchsbaum. 13.2 Figure 3.3 from The Anatomy of Violence: The Biological Roots of Crime by Adrian Raine, copyright © 2013 by Adrian Raine. Used by

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list of illustrations permission of Pantheon Books, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. All rights reserved. 253 James Holman, frontispiece to The Narrative of a Journey . . . Through France, Italy, Savoy, Switzerland, 1822. Engraved by R. Cooper after Fabrioni. Copyright British Library. 267 Andreas Vesalius, De Humani Corporis Fabrica Libri Septem, 1543. Source: Wellcome Library, London (EPB 6560/D). 278 Julius Casserius, De Vocis Auditusque Organis Historia Anatomica, 1600-1, p. 122. © British Library Board (544.l.8). 284 Title page to Helkiah Crooke, Mikrokosmographia, London, 1631. Source: Wellcome Library, London (EPB 1686/D). 288 Reprinted from The Multiple Dimensions of Dyspnea: Review and Hypothesis, Robert W. Lancing, Richard H. Gracely, Robert B. Bansett, ‘Respiratory Physiology and Neurobiology’, Fig. 2, p. 17. Copyright 2009, with permission from Elsevier. 302 and 18.2 Andrew Cooper, Between a Rock and a Hard Place, 2006. Fibreglass/acrylic/fabric/CAT scans/metal exhibited in ‘This is My Body’, Birkbeck and Irish Museum of Contemporary Art, July 2011. Author’s photographs, reproduced with permission of the artist. 325 and 18.4 Attempting to see the body in Between a Rock and a Hard Place, exhibited in ‘This is My Body’, Birkbeck and Irish Museum of Contemporary Art, July 2011. Author’s photographs, reproduced with permission of the artist. 327 Antonin Artaud, Poupou rabou, 1945. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Adam Rzepka. 357 Antonin Artaud, The Hanged Woman, undated. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Georges Meguerditchian. 366 Antonin Artaud, Couti – The Anatomy, c. 1945. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/ Christian Bahier/Philippe Migeat. 367 Antonin Artaud, Death and Man, c. April 1946. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Philippe Migeat. 368 Antonin Artaud, The Sexual Awkwardness of God, c. 1946. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Adam Rzepka. 370 Characterisation as Categorisation: Human Disability as Species Transformation. Author’s own figure. 474 Characterisation as Categorisation: Non-human Ability as Species Transformation. Author’s own figure. 474 Characterisation as Re-Categorisation: Disability as Ability. Author’s own figure. 475

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list of illustrations 28.1 Health workers save lives!’, reprinted from WHO, Working Together for Health. The World Health Report 2006 (Geneva: World Health Organisation, 2006), p. xvi, Figure 1. Source: . 29.1 Number of appearances of ‘counsel’ in printed texts, 1473–1700. Author’s own table. 29.2 Percentage of printed texts containing ‘counsel’ or ‘happiness’ compared, 1473–1700. Author’s own table. 29.3 Percentage of printed title pages with ‘counsel’ or ‘happiness’ compared, 1473–1700. Author’s own table. 29.4 Semantic network for ‘counsel’. Author’s own diagram. 33.1 Bill for J. Williams Benn’s ‘Sketching Entertainment’. Photograph: Anna Harpin, reproduced by permission of the Berkshire Records Office/West London Mental Health NHS Trust. 33.2 Programme for Signor Bosco’s magic show, 6 December 1881. Photograph: Anna Harpin, reproduced by permission of the Berkshire Records Office/West London Mental Health NHS Trust. 33.3 Programme for John Dobbs, 7 June 1881. Photograph: Anna Harpin, reproduced by permission of the Berkshire Records Office/ West London Mental Health NHS Trust.

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ACKNOWLEDGEMENTS

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he completion of this project could not have been accomplished without the assistance and support of a number of organisations and individuals. First, the Wellcome Trust made it possible, through the award of a small grant, for us to hold a two-day symposium for contributors, hosted by the Centre for Medical Humanities, Durham University, in April 2014. The opportunity to bring contributors together to discuss the Companion at a vital stage of its development was invaluable and the symposium provided a rich and energising forum for discussion. A special thank you is extended to the Universities of Newcastle and Durham. The School of English Literature, Language and Linguistics at Newcastle University has generously contributed financial support towards indexing costs. A particular debt of gratitude is owed to the Head of School, James Annesley, and to the former Head of School, Kate Chedgzoy, for their encouragement of and commitment to the project. The Centre for Medical Humanities at Durham University provided a venue and funding for editorial meetings and time for three of the editors to devote to this project through the generous support of its associated departments, the School of Medicine, Pharmacy and Health and the Department of Geography. The Durham-based editors also specifically acknowledge the support of the Wellcome Trust, whose strategic award enabled much of their work towards developing the ideas that appear in this volume. We also offer particular thanks to our editorial assistant, Nicole Bush, whose work was supported by the Department of English Studies and Centre for Medical Humanities. Nicole took on the responsibility of copy-editing the chapters and overseeing permissions costs, and has done so with thoroughness and good cheer throughout. Thanks are also extended to those individuals who have contributed to the Companion along the way. We express our appreciation to Sander Gilman and Ludmilla Jordanova, and also to our advisory editorial board: Christine Borland, Sir Liam Donaldson, Christine Milligan, Audrey Schafer, Philip van der Eijk, John Harley Warner and Patricia Waugh. The Companion would not have been possible without Jackie Jones, and we thank her for her generosity and receptiveness to such a forward-facing project, which extends the medical humanities in new directions. She has been a supportive presence at each

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stage of the project’s development. We are grateful to the two anonymous reviewers for their valuable feedback on the proposal. Dhara Patel and Adela Rauchova have also guided us carefully through the editorial process, and provided prompt assurance and assistance along the way. General Editors: Anne Whitehead and Angela Woods Associate Editors: Sarah Atkinson, Jane Macnaughton, Jennifer Richards

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INTRODUCTION Anne Whitehead and Angela Woods

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he medical humanities, we claim, names a series of intersections, exchanges and entanglements between the biomedical sciences,1 the arts and humanities, and the social sciences. The Edinburgh Companion to the Critical Medical Humanities introduces the ideas, individuals and scholarly approaches that are currently shaping the field. The medical humanities is an area of inquiry that is highly interdisciplinary, rapidly expanding and increasingly globalised. As this Introduction and the chapters that follow demonstrate, The Companion is both a reinvigoration and a critical reorientation of the medical humanities: an identification of new challenges for research, which also expands the methodologies, perspectives and practices that might be called upon to meet them. This Introduction begins by identifying and analysing a ‘primal scene’ that has dominated the first wave of the medical humanities. Focusing on the communication to the patient of a diagnosis of cancer, we position this scene as symptomatic of the imaginary of first-wave or mainstream medical humanities, asking what it might have to tell us about the identity – and also the anxieties – of the field. In framing our discussion of the field, we speak of first-wave or mainstream medical humanities, and refer to the critical medical humanities as the second wave. In doing so, our aim is not to set up an oppositional or binary structure within the medical humanities but rather to indicate that medical humanities is a fluid notion, which is likely to shift and develop as scholarly fashions, health focuses and political contexts change. We are not, then, claiming the critical medical humanities as the final word, but rather as an encapsulation of the field’s current momentum, and with an anticipation of more waves yet to come.2 We move on to examine how the medical humanities is currently expanding and reorienting itself, embracing new historical, cultural and political perspectives, as well as different questions and methodologies. We ask what, precisely, is ‘critical’ about the critical medical humanities, examining how the field mobilises the notion and practice of critique, as well as how it orients itself in relation to other ‘critical’ turns. The Introduction also offers readers a series of pathways through the volume, focusing first on the four thematic sections – ‘Evidence and Experiment’, ‘The Body and the Senses’, ‘Mind, Imagination, Affect’, and ‘Health, Care, Citizens’ – before suggesting alternative trajectories based on discipline, period, spaces/sites, and thematic and methodological concerns related to violence and to questions of authority and expertise.

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The ‘Primal Scene’ of the Medical Humanities Our starting point is neither the history nor the identity of the medical humanities3 but its imaginary, which, we suggest, is structured around the clinical encounter between the doctor and the patient: more specifically, the scene that unfolds the diagnosis of cancer.4 Investigations of this scene, whether empirical, philosophical, literary or historical, have placed a humanist emphasis on individual protagonists and the role of narrative, metaphor and gaps in communication within the dynamics of the clinical interaction. A focus on the lived body of the cancer patient qua patient has tended to divert attention away from dimensions of gender, class, race, sexuality and debility within this scene; the specific health policies and practices that shape it in time and place; and its material and economic underpinnings. The fact that the scene does not announce its cultural, historical and institutional setting speaks powerfully to the implied or assumed generality of a UK and US mainstream. Far less is there a focus on ‘non-medical’ notions of health, illness and wellbeing; the production of clinical knowledge; or the sense that humanities and social sciences might play a constitutive role in shaping such knowledge. Rather, the staging of scholarly authority within the scene entails that the humanities act, or are positioned, as a kind of third party to it: the humanities are looking at medicine looking at the patient. Our point here is not to suggest that the moment of cancer diagnosis is somehow an unimportant topic or an otherwise unsuitable object of scholarly inquiry; rather, we are interested in the question of why this scene has come to matter so much in and to the field, what interests might be invested within it, and what is potentially occluded from view – both within the scene itself and in relation to other sites and modes of inquiry. We need to open up possibilities for the medical humanities to operate in radically different arenas of critical consideration, to address difficult, more theoretically charged questions, and to claim a role much less benign than that of the supportive friend.5 How might the bodies of doctors and patients be marked in terms of race, class, gender, ability and disability, and with what effects? What else, we might ask, is in the room, and with what forms or modes of agency might it be associated? How might we account for non-human objects and presences, for belief systems, and even for the diagnosis itself – what, for example, is its history, or its status as a performative act? Where and when else might the scene be situated, and what difference would this make? The critical medical humanities thus does not represent a rebranding exercise, but rather an attempt to pose more critical questions; to re-envisage the scene, perhaps with a critique of the way in which it has been addressed so far by medical humanities scholarship. As well as interrogating the primal scene, the critical medical humanities goes further to explore new scenes and sites that may be equally important to our understandings of health and illness – the laboratory, the school policy, the literary text. We thereby aim to understand how concepts, frameworks and data operate in more public spheres. This widening of focus is also a call to reflect on the ways in which

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the humanities and social sciences are themselves taking up medical concepts. How do they align themselves with medical ideas in their theorisations and operations? What aspects of biomedicine have become prominent in these disciplines, and which are under-represented? How might we productively rethink the notions of collaboration and interdisciplinarity that are integral to our project of expanding the frame of inquiry?

The Three ‘Es’ of Medical Humanities We have noted that the ‘primal scene’ of mainstream medical humanities has focused the gaze in a particular way. It also gives rise to and binds together our version of the three ‘Es’ that have shaped and defined the field: ethics (medical ethics and bioethics), education (medical, but also increasingly health) and experience (particularly qualities of illness experience). In what follows, we will briefly discuss each category in turn, before moving on to ask how the critical medical humanities might refocus and redirect our attention. Specifically, we argue in this Introduction that the critical medical humanities organises itself in relation to a new ‘E’: the concept of entanglement. In order to capture a defining moment of first-wave medical humanities in the UK, we turn to Arnott et al.’s ‘Proposal for an Academic Association of the Medical Humanities’ (2001). Summarising the then emergent field, Arnott et al. note: ‘The medical humanities’ is, in the United Kingdom, a relatively new term for a sustained interdisciplinary inquiry into aspects of medical practice, education and research expressly concerned with the human side of medicine. These are, most especially, the nature, importance and role of human experience on the part of patients and practitioners alike, including their experience of the patient–practitioner relationship. Historically the first and most obvious feature of this inquiry was the modern exploration of medical ethics. ‘The medical humanities’ is the name of a more inclusive inquiry, though one that embraces ethics.6 If the field of medical humanities is here positioned as developing out of and expanding that of medical ethics, this intellectual lineage also focuses its attention on issues where moral values are in doubt or crisis. Medical ethics, and more recently bioethics, thus bring into prominence for the medical humanities end-of-life care and decisionmaking, as well as reproductive medicine. At the same time, medical ethics prioritises effective communication across and between all stakeholders in the healthcare setting or context. We do not wish to deny that these are valid and important sites of inquiry; rather, we seek to trace how the specific concerns of medical ethics might have shaped and influenced what has come to matter in and for the medical humanities. Returning to our ‘primal scene’, we can readily discern within it hallmark concerns with (potential) end-of-life care and decision-making, and effective patient–practitioner communication.

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Our ‘primal scene’ can also be seen to be expressive of a notable anxiety regarding the effectiveness, in terms of empathy rather than of accuracy or truth-telling, of the doctor’s communication of the cancer diagnosis to the patient, and this leads us to the second of our three ‘Es’: education. Under the influence of the US, where medical humanities programmes have been predominantly based in medical education, the first wave of the medical humanities in the UK also developed a strong pedagogical focus. Central to the emphasis on medical training was a specific interest in, and concern about, issues of communication. Arnott et al. observe: Patients have detailed knowledge of their own experiences of illness. Doctors have detailed scientific knowledge of disease processes. These two kinds of knowledge appear very different, and bringing them together is not straightforward. If done successfully, then both patient and doctor have a shared understanding which could be said to be ‘intersubjective’ knowledge.7 Operating within a series of binaries (patient/doctor, illness/disease, medicine/ humanities), first-wave medical humanities aimed to produce a shift in clinical method towards attending to and interpreting patients’ subjective experience as well as scientific knowledge and data. The field developed new curricula and educational materials, which sought to draw the perspectives and modes of inquiry of the humanities and social sciences into medical and health education. While the role of the humanities and social sciences in medical and health education remains a central concern of the field as a whole, it is not our focus in The Edinburgh Companion to the Critical Medical Humanities. Instead, where pedagogy does come into view, contributions to this volume look not to specific aspects of curricula but to the concepts and politics underpinning them and to how models of interdisciplinarity, or even of postdisciplinarity,8 might be rethought in a mode that does not assume already existing territories of knowledge. In expanding our range and scope of inquiry, our aim is not to produce a new binary between teaching and research, areas of activity that are rightly and necessarily intertwined, but rather to consider how a critical reorientation might potentially invigorate both aspects of the field.9 Integral to the incorporation of the humanities into medical education was a focus on the illness experience, a category that has been of particular significance to mainstream medical humanities. In establishing curricula, proponents of first-wave medical humanities accordingly privileged texts that provided a realist account of a particular medical condition. For the patient, narrative was seen to provide an effective vehicle for articulating illness, and to hold potentially transformative value.10 For the practitioner, narrative competence was integrated into training for clinical diagnosis and treatment.11 Following Angela Woods’s influential critique of narrative’s dominance in the medical humanities,12 this volume opens up the question of the function and status of the literary text, and of what kind of evidence it represents. The issue of narrative’s position in the critical medical humanities is addressed by Brian Hurwitz and Victoria Bates, who contend that it still has a central role to play. The debate is developed by Laura Salisbury, who argues for a distinction between narrative and language, proposing that the experimental and

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non-realist modes of modernist texts might offer a useful model for representing illness. The critical medical humanities is also invested in non-literary forms of representation, and the chapters on visual culture in this volume could readily be supplemented by thinking about the potential of music, or of hybrid forms such as the graphic novel, for capturing and conveying patient experience.13 More than this, the critical medical humanities questions the value accorded to empathy (itself a fourth and final ‘E’ that might be added to our list) in first-wave medical humanities. The positioning of narrative as ‘the cure-all for an increasingly mechanical medicine’ through the production of ‘more empathic’ practitioners has recently been critiqued by Jeffrey Bishop, on the grounds that it ‘perpetuates a dualism of humanity that would have humanism as the counterpoint to the biopsychosociologisms of our day’.14 This is an important point, and one that finds echo in our volume from Des Fitzgerald and Felicity Callard, and from Patricia Waugh. In reorienting the question of experience, the critical medical humanities insists that we move beyond the assumption that all affect and feeling are to be found in the arts and humanities, and all hard-nosed pragmatism in the biomedical sciences. Rather, we begin to ask instead what the biomedical sciences might have to tell us about empathy, or how the arts and humanities might speak of affective distance, and even a lack of care.15

Why the ‘Critical’ Medical Humanities? The current valence of the term ‘critical’ in relation to the medical humanities in particular has been addressed by William Viney, Felicity Callard and Angela Woods in their introduction to a recent special issue of Medical Humanities.16 Their discussion offers a rich starting point for beginning to think through the ways in which the ‘critical’ might most productively be aligned with the medical humanities, and what it might mean to do so. Turning first to postwar critical theory as a vital mode of generating social and political change, and as closely tied to activist movements, Viney, Callard and Woods cite the following as important intellectual landmarks: the Frankfurt School, the key proponents of which ‘built on a much longer European tradition of written critique, of sustained and methodical analysis of a given object or process’; Michel Foucault’s influential archaeologies of thought, which mobilised critique in an oppositional sense ‘as a means to resist “presumptuous reason and its specific effects of power” ’; the clarion call of Judith Butler to regard critique not simply as a rhetoric of negativity, but rather (or also) as a means of bringing about structural change; and Bruno Latour’s characterisation of critique as a form of disruptive rebellion, making visible the assumptions and prejudices that are masked by the apparent neutrality and objectivity of science.17 Pulling through these examples, taken from thinkers who differ radically in methodology and approach, are inevitable tensions regarding what critique is and might do (analyse, oppose, mobilise change); nevertheless, each writer can broadly be characterised as conceiving of critique as necessarily assuming a stance or mode of positioning in relation to a presumed object, which in the case of medical humanities would most commonly be conceived as biomedical science.

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Globalising the Medical Humanities Pausing for a moment over the landmarks selected by Viney, Callard and Woods, it is notable that these are explicitly located ‘in European and US universities’.18 Their list is complemented in this volume by numerous additional points of reference: to name a few, Sara Ahmed, Donna Haraway, Susan Sontag and Slavoj Žižek. However, this Companion also consciously expands the range and scope of those who might be viewed as key thinkers in the project of critique. This extension is, in the first instance, geographical. Thus, Volker Scheid – like Viney, Callard and Woods – returns to the Frankfurt School as a vital reference point for the notion of critique, citing German– Jewish philosopher Max Horkheimer to assert a model that is directed towards change and so inherently allied to the orientation of the medical humanities towards improved medical practice. Yet for Scheid, the project of the critical medical humanities in an era of globalisation aptly entails thinking through Horkheimer’s understanding of critique in dialogue with that of early twentieth-century Chinese philosopher, revolutionary and medicine scholar Zhang Taiyan. Reflecting his own complex positioning as at once Western academic and practitioner of Chinese medicine, Scheid advances his own clarion call for a critical medical humanities that would not only embrace different influences and points of departure, but that might also think more carefully about who and what are positioned as subjects and objects of inquiry, and with what effects: If the medical humanities truly intend to become a space for critique rather than mere criticism, its practitioners will need to find ways of moving beyond the modern constitution that defines and constrains them, not least through their one-sided attachment to biomedicine. [I] argu[e] that opening ourselves up to non-modern medical traditions, not as objects of inquiry but as resources for thinking critically about the fundamental issues of our time, presents an opportunity for doing precisely that.19 Scheid’s inclusion of Zhang Taiyan as an intellectual companion on the journey towards a critical medical humanities might readily be complemented by other thinkers who would extend its reach beyond the European and US academy. Martiniquan psychiatrist and revolutionary Frantz Fanon, for example, also still has much of relevance to offer, not least on the inescapable imbrication of biomedicine in social, political and institutional structures, and on questions of pathology and resistance.20 Nor should the project of critique be reserved exclusively for those who might broadly be termed critical thinkers: in her self-conscious turn to alternative geographies not usually encompassed by the medical humanities, Rosemary J. Jolly makes a case for the role of creative practitioners in critically exploring transcultural medical encounters, not least because their methods often lend themselves to the opening up of issues rather than to definition or assertion.

The Critical is/as Historical By also insisting upon the inclusion in the critical medical humanities of historical perspectives that might offer an alternative mode of moving beyond the dominant

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paradigm of biomedicine, Scheid’s work joins other contributions to this volume in which period specialists across a range of disciplines reflect on the ‘critical’ value of paying attention to the past (or rather, to a number of different pasts). Broadly summarised, three main arguments can be advanced for what historical perspectives might bring to the project of a critical medical humanities.21 First, they offer alternative vantage points from which to view, reflect on and critique the biomedical. Corinne Saunders, for example, draws on medieval representations of the interrelation between mind, body and affect to explore the surprising ways in which pre-Cartesian perspectives chime with current neuroscientific approaches; Lauren Kassell positions the early modern as a period of information revolution driven by the advent of paper technologies, and asks how the ways in which medical knowledge was recorded and organised might inflect our sense of the current digital revolution; and Cynthia Klestinec parallels the expanding and competitive early modern medical marketplace to our own time, reflecting on how and why patients trust practitioners and comply (or not) with their instruction. Moving to the nineteenth century, Lindsey Andrews and Jonathan M. Metzl argue that historical imaging practices render visible in present imaging technologies a troubled racial legacy, while Heather Tilley and Jan Eric Olsén locate in the period a shifting and unstable discourse on the senses, which opens up new perspectives on the representation of blindness. Here, then, the historical is used to locate and identify points when medical traditions and practices are being contested and developing in new ways, and these sites of transformation provide the stance or position from which the object of biomedicine can be viewed and critiqued. Secondly, a historical perspective can enable us to attend to different forms of qualitative critical thinking – and different ways of sensing our world – that were important in the past and that may remain with us today, even if we have lost the vocabulary to describe them. Jennifer Richards and Richard Wistreich highlight through their discussion of medical accounts of early modern voice the vitality of disputation as a way of thinking that was highly valued from the medieval period up to the nineteenth century and as one that could recognise uncertainty and allow for scepticism. Peter Garratt identifies in nineteenth-century aesthetic and psycho-scientific discourses a notable tension or equivocation between reading as injurious to health and reading as therapeutic resource, arguing that current attitudes towards reading and health would benefit from a longer historical perspective. Finally, thinking historically can, as Fitzgerald and Callard point out, help us to understand the extended, continual and shifting process of negotiation through which certain objects and practices come to our attention and others fade from view. Ian Sabroe and Phil Withington, for example, argue for the importance of attending historically to the language of medicine and health; tracing the shifting fortunes and resonances of the word ‘counsel’, they bring into view a movement away from the clinical encounter as conversation. Across the various modes of engaging (with) the historical, the contributors’ detailed and nuanced reflection on how past and present contrast, counterpoint and complement each other collectively resists a simplistic, or moralistic, narrative of historical change.

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Institutions, Opposition, Implication It is clear, then, that in terms of a project of critique, a particular geographical location or historical period can offer an effective vantage point from which to (re)view Western biomedicine. Elsewhere in the volume, contributors have chosen as an alternative focus specific institutional structures, histories and practices: Lucy Burke, for example, examines UK care institutions; Lisa Guenther, the execution chamber of the American penal system; and Anna Harpin, the history of theatre at the notorious Broadmoor psychiatric institution. Alternatively, specific illnesses, including their designation as such by biomedicine, can provide the grounding for discussion: Jane Macnaughton and Havi Carel engage with the symptom of breathlessness, and particularly with the diagnostic category of chronic obstructive pulmonary disease (COPD), while Bethan Evans and Charlotte Cooper examine the ways in which fatness has been framed within clinical and public health discourses. Each of these approaches opens up new critical perspectives on biomedicine, leading inevitably to the question: What, then, is the ‘critical’ work that is being enacted in and through the critical medical humanities? The response, in the context of this volume, is neither simple nor singular. Many of our contributors express a commitment to the legacy of critical theory, and its often explicit alliance to social and political activism, to write in opposition to contemporary biomedicine: see, for example, Sarah Atkinson, Burke, Luna Dolezal, Evans and Cooper, and Guenther. The Companion recognises the importance of continuing and revitalising a tradition of antagonistic thinking; we do not wish to forget or to underestimate the potential to effect change of criticism with purpose, and Ahmed’s model of the killjoy, quoted by Evans and Cooper, stands as a powerful figure for this mode of praxis.22 Feminist theory has emerged as a particularly energising and dynamic undercurrent running through many of the chapters, and it should perhaps come as no surprise that this intellectual tradition, which has engaged so attentively with, amongst others, questions of the medical, the gaze, the body, affect, power and resistance, should make its presence felt in the current collaborative project of articulating a critical medical humanities. The Companion also, however, claims an alternative vision of the ‘critical’, which is based not in opposition but in implication. We arrive here, then, at the ‘E’ of the critical medical humanities: the notion of entanglement. This term has recently been defined by Viney et al., who assert that the critical medical humanities would do well to be wary of an antagonistic mode of thinking, embracing instead the heterogeneous and partial positions and practices that often define research in the field: Many actors who populate the medical humanities are, we should recall, specialist multi-taskers: they collaborate across and between disciplines, inside and outside of clinical and para-clinical spaces, and frequently move from the position of patient to clinician to researcher to future patient. In such movements are born new practices and alliances that course across methodologies, epistemologies, kinds of experimental space and design.23 Here, then, the critical medical humanities is based in mobility, fluidity, movement: a creative boundary-crossing in and through which new possibilities can emerge.

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A legacy of feminist theory can again be seen at work in the concept of entanglement, notably in feminist philosopher Karen Barad’s influential work on agential realism. In their opening chapter to The Companion, Fitzgerald and Callard elaborate on the concept of entanglement, harnessing and revitalising Barad’s ideas in the context of the critical medical humanities. Central to Barad’s thinking is the idea that phenomena do not precede their observation (and hence require the development of increasingly sophisticated technology and equipment to discern and measure them) but rather emerge – or, alternatively, fail to take on determination – in and through the coming together of particular material assemblages, which include the experimenter, the object of the experiment, the experimental apparatus and the laboratory setting. Barad refers to the complex intra-action between these various elements, which, she argues, has far-reaching implications: In particular, I propose ‘agential realism’ as an epistemological-ontological-ethical framework that provides an understanding of the role of human and nonhuman, material and discursive, and natural and cultural factors in scientific and other social-material practices, thereby moving such considerations beyond the wellworn debates that pit constructivism against realism, agency against structure, and idealism against materialism. Indeed, the new philosophical framework that I propose entails a rethinking of fundamental concepts that support such binary thinking, including the notions of matter, discourse, causality, agency, power, identity, embodiment, objectivity, space, and time.24 One could readily add to Barad’s list of ‘well-worn debates’ the pitting of the humanities against medicine and, for the project of a critical medical humanities in particular, her model holds interesting potential. Fitzgerald and Callard observe that we might extrapolate from Barad’s insistence on the necessary implication of the experimenter with her apparatus a fundamental recalibration of scientific and medical authority. Additionally, Barad’s repositioning of science not as objective knowledge but as a set of material-discursive practices that configure what comes to matter – as well as what does not – can, in the context of the critical medical humanities, call our attention to the inescapably political dimensions of biomedical research. If the field of medical humanities has to date focused predominantly on political and ethical questions concerning patient–practitioner interaction and beginning-/end-of-life care, Fitzgerald and Callard note that the critical medical humanities might usefully enter into and intra-act within the medical research laboratory, asking: ‘how might the methodological and intellectual legacies of the humanities intervene more consequentially in the clinical research practices of biomedicine?’25 In this sense, the ‘critical’ marks an ambition to see the humanities more fully embedded into biomedical research, beyond the clinical encounter per se.

Critical Entanglement The model of the ‘critical’ that is advanced by Fitzgerald and Callard resonates through a number of chapters in The Companion. It is taken up first by Annamaria

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Carusi in her analysis of modelling practices in systems biomedicine. As a humanist scholar who has entered into close collaboration with biomedical researchers, Carusi echoes Fitzgerald and Callard in registering a shift away from the dualistic and the oppositional as modes of describing and thinking through the complex, enmeshed relations of the research laboratory: ‘I consider how . . . non-dualist frameworks open up different ways of thinking about systems biomedicine and the implications for ourselves as “digital patients” [, as well as] the responsibilities this implies for the critical humanities medical scholar.’26 Carusi’s point here is a powerful one with regard to the critical medical humanities: if we take seriously the project of reconceiving how ways of knowing and acting, how bodies, technologies and environments are intertwined, then we also need to commit ourselves to the intellectual responsibilities that emerge as a consequence. William Viney’s chapter also turns its gaze to the research laboratory, examining the use of twins in biomedical experiments. For Viney, too, it is crucial to think beyond the binaries that have so far characterised the medical humanities: One of the challenges when developing a ‘critical’ agenda in the medical humanities has been to suggest alternatives to this adversarial thinking, to do more than sit on the sidelines decrying the poor ethics of others and the statutory importance of ‘humanity’. This process might begin by acknowledging how medical and healthrelated knowledge, care, intervention, education and research are extensively, complexly and unevenly distributed throughout social life, deeply and irrevocably entangled in the vital, corporeal and physiological commitments of biomedical research.27 Negotiating the question of the ‘human’, Viney interrogates what happens when the experimenter in twin research regards herself as separate from her subject(s), and the ethical and political repercussions that can arise. He also applies the concept of entanglement to the category of the human itself, drawing on Mel Chen’s sliding scale of animacies28 to challenge the fixed categories of human/non-human and to explore alternative, more flexible and open epistemologies, concluding that: ‘Such a view promises to open up the thingliness of specific people that refuses biological essentialism and recognises how animate identities can be internally external, born and raised, materially and dynamically distributed with and between bodies.’29 Viney regards the task of rethinking the category of the human to be particularly urgent as biomedical research increasingly highlights its material and molecular dimensions; twins offer a valuable focus because of their historical, and troubled, positioning as sites of experiment and measurement. Finally, David Herman also turns to the questions of implication that are embedded in the concept of entanglement to think through the assemblage of bodies and subjectivities that is put in play in and through animal assistant therapies. Focusing on the representation of animal assistants in narratives of autism, Herman identifies the complex and multi-layered ways in which the binaries of human/non-human and able/ disabled are unsettled and complicated, raising powerful questions of agency and, to return to Barad’s phrase, intra-action. Although Herman’s focus on the human/animal

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intersection addresses animal assistants specifically, it also has resonances with the use of animals in biomedical research experimentation, and reads suggestively in conjunction with Viney’s chapter if viewed in this light.

Phenomenology and the Critical We have argued thus far in this section that feminist criticism has emerged as a strong presence in this volume, leading on the one hand to a politics of antagonism, and on the other hand to a politics of implication. Another key area of critical potential, although it can sit uneasily at times with critical theory, is phenomenology.30 Again, this should perhaps come as no surprise, given that this branch of philosophy has produced a sophisticated mode of description for many of the key terms highlighted in the sections of The Companion: body, senses, mind, imagination and affect. More recently, phenomenology has been revitalised through its intersection with philosophy of mind and critical neuroscience, and Shaun Gallagher has been particularly important in theorising concepts of intersubjectivity and embodied cognition.31 In this volume there are four key ways in which phenomenology is positioned in relation to the critical medical humanities. First, phenomenology can be productively harnessed to a politics of opposition to the biomedical, in its privileging of the first-person perspective. Thus, in the context of the lived genome, Christoph Rehmann-Sutter and Dana Mahr turn to Edmund Husserl on the life world, to argue for the importance of phenomenology in countering an exclusively biomedical understanding of genetically related disorders. Jill Magi, Nev Jones and Timothy Kelly also return to Husserl to articulate a powerful critique of how the first-person perspective has been integrated into studies of psychosis, and the issues of voice and representation that it raises: The first-person experience of psychosis most often appears in scholarly work as ‘evidence’ for an often dispassionate other to interpret. Rigorous work on the phenomenology of psychosis has been carried out almost exclusively by those without claim to the first-person lived experience . . . Nevertheless, we ask, might phenomenology, as articulated in Edmund Husserl as a disciplined engagement with firstperson experience, provide closer access to psychosis, ‘originarily’?32 In this sense, then, the critical medical humanities continues a trajectory already established in first-wave medical humanities, although with a closer attention to whose voice is deployed, how, and with what effects. Secondly, phenomenology is viewed in its historical and cultural context. Edmund Juler accordingly compares phenomenology with the parallel movement of psychophysiology, arguing that while the former attended to somatic experience as part of a broader investigation into perception, the latter focused its account of the self in neuropathology. Laura Salisbury’s account of phenomenologist Maurice Merleau-Ponty complicates this view, contending that recent neurological advances in aphasia were central to MerleauPonty’s representation of our meaningful relations with the world. In spite of their differences in perspective, both of these chapters attend to phenomenology within its own

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cultural moment, positioning it as already engaged with, and defining itself in relation to, medical debates and discourses. Thirdly, contributors to this volume are concerned with how phenomenology might be applied in medicine today. Here, there is a marked emphasis on the relevance of phenomenology beyond clinical neuroscience, where it has already been influential: Jonathan Cole and Shaun Gallagher argue for its significance across a range of chronic physical disorders, while Macnaughton and Carel contend that in the context of COPD it could usefully counter an overdependence on brain imaging technologies. In the critical medical humanities, then, there is a notable extension of phenomenological approaches towards the management of long-term physical conditions, including pain.33 Finally, phenomenology is also harnessed in this volume towards the project of entanglement, in particular through its attention to the intersection between inner and outer. Thus, Carusi turns to Merleau-Ponty to articulate a model of the measuring body that seeks to move beyond duality and towards intertwinement; Viney, on the other hand, articulates suspicion of phenomenology’s dualist tendency to distinguish between human inner and non-human outer, and looks instead to vital materialism for a more dynamic model of inter-relationality. While phenomenology thus remains central to the critical medical humanities, it is significantly interrogated, historicised and destabilised, and is also thought through in relation to different medical contexts and conditions.

Critical Medical Humanities: A Turn Among Many? Having thus identified the critical work that the critical medical humanities might be said to do, and the important influences from critical theory that inform its project(s) of critique, it now remains to address the intersection of the critical medical humanities with other relevant ‘critical’ turns in contemporary scholarship. Arguably of most significance here is the emergence of critical disability studies. Characterised by Margrit Shildrick as a reassessment of the aims and assumptions of twentieth-century disability studies,34 the field revisits questions of care, the body and activism in the context of economic austerity. In doing so, critical disability studies moves beyond the Marxist-materialist frameworks that were dominant in disability studies, looking also to feminist, queer and postcolonial theoretical models.35 At the same time, there is also a move to extend the geographical scope of disability studies beyond the global north, in terms of asking how disability is configured in the global south and also by addressing subaltern traditions of resistance and activism.36 In The Companion, the concerns of critical disability studies can be felt most evidently in the fourth section, ‘Health, Care, Citizens’. Burke and Harpin both interrogate, in the contexts of dementia and criminal pathology respectively, the notion of ‘care’ in relation to mental health. Other chapters in this section are more closely aligned to the globalising agendas of critical disability studies: Atkinson also focuses on the concept of care, or more precisely its failure or absence, in the context of the global organ trade;

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Hannah Bradby criticises dominant conceptual models of the global migration of medical and health professionals for their focus on resource and regulation; and Jolly makes visible hidden alliances between biomedicine in the global south and colonising philosophies. Unsurprisingly, the concerns of critical disability studies also emerge in the ‘Body and the Senses’ section: here, Evans and Cooper argue for the productive intersection of fat studies with queer and disability theory, and Tilley and Olsén think about how blindness was constructed as a disability in the nineteenth century, looking in particular at how emergent technologies of touch could act either to enable or to disable the blind through rendering them as active or passive recipients of knowledge. Critical disability studies can thus be seen to intersect with the critical medical humanities in the politicisation and theorisation of the body, and in the politics and ethics of care. The second critical turn that might usefully be signalled as relevant to the critical medical humanities is the development of critical animal studies. Emerging as a movement in philosophy at Oxford in the early 1970s, the field has recently gained significant ground, and currently constitutes a vibrant and rapidly growing multidisciplinary movement, with its own journal and monograph series.37 Of most relevance to this volume is the interest of the field in critically reassessing the animal/ human boundary; while this informs Herman’s chapter most explicitly, the inherent concern of critical animal studies with reconfiguring questions of agency and affect also intersects with the interests of Fitzgerald and Callard, and of Viney.38 Also central to critical animal studies is the question of animal rights, and here future work in the critical medical humanities might usefully address how the body of the animal comes to matter not only in therapeutic/clinical contexts but also in the biomedical research laboratory.39 Critical disability studies and critical animal studies are both influenced by a broader turn towards questions of human rights within the academy,40 and this too engages with the concerns of the critical medical humanities: see, for example, Guenther on the implication of biomedicine in US penal execution practices, or Viney on the dark history of twin research. Other key ‘turns’ that are also resonant with the critical medical humanities can be identified as follows: the digital turn, which at once raises questions around the integration of digital technologies into biomedicine (Andrews and Metzl, Dolezal) and enables ‘big data’ scholarship in the arts and humanities, opening up new research methodologies and questions (Kassell, Sabroe and Withington); the visual turn, which fosters a critical interrogation of the reliance of biomedicine on imaging technologies and the identification of alternative practices (Macnaughton and Carel, Richards and Wistreich), as well as an attentiveness to the visual arts as mode of intervention and critique (Rachael Allen, Suzannah Biernoff, Juler); and finally the material turn, which has reoriented the traditional focus of the humanities on culture, mind and language towards an emphasis on nature, bodies and things, and which underpins this volume’s deep investment in the ineluctable materiality of discursive praxis (see, for example, Martyn Evans on the body as vibrant matter, or Richards and Wistreich on the anatomy of voice).41 Of particular resonance here is the recent emergence of

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feminist materialism, and key critics alongside Barad include Elizabeth Grosz, Donna J. Haraway and Elizabeth A. Wilson.42 The importance of these scholars for the medical humanities is signalled by Stacy Alaimo and Susan Hekman in their introduction to the edited collection Material Feminisms: they observe that without a sophisticated discourse for describing bodily materiality, it is ‘nearly impossible for feminism to engage with medicine or science in innovative, productive, or affirmative ways – the only path available is the well-worn path of critique’.43 While marking a distinctive turn within the medical humanities per se, The Companion thus also registers the inevitable intertwining of this shift with broader developments across the arts and humanities; thinking rigorously and flexibly across existing – and emergent – points of interconnection will be both vital and energising to future scholarship in the critical medical humanities.

Critical Mass and Urgency Tracing a line of influence from critical theory into the critical medical humanities, and indicating how this intellectual genealogy inflects the modes of critique that are at work in the field, we have endeavoured here to map out – albeit in a very preliminary form – how a ‘critical’ medical humanities might be positioned within, and intersect with, a range of other recent ‘turns’ across the arts and humanities. In doing so, we hope to have captured something of the dynamism and force of the term ‘critical’ within current medical humanities scholarship; however, there are two alternative significations of the word that have also taken on particular meaning in the course of working on the volume. First is the idea of critical mass: the sense of a gradual gathering in numbers, a cumulative growing in density, which eventually reaches a tipping point. The chapters in this volume transmit, necessarily in partial form, the vibrancy and the diversity of critical attention that is being paid to medicine and health across a range of disciplines and practices, from diverse international contexts and communities, and by scholars both new and established. Placed together with the direction taken by major journals in the field, the impetus provided by international funding bodies, and the recent surge in medical humanities research centres and institutes within the academy, the momentum for the critical medical humanities seems to be gathering pace. Relatedly, then, we call attention to a sense of urgency and imperative that is also embedded within the term ‘critical’. The Companion represents not a definitive statement on the critical medical humanities, nor an outlining or demarcating of its boundaries, but rather the response to and representation of a moment of emergence, one that registers and records a growing mass or density, a vital animacy, in a field that is at a crucial point or nexus of growth, shift and change.

Pathways through The Companion Pressing on the term ‘medical’ and taking a view of the humanities that extends to encompass the arts and social sciences, the critical medical humanities widens still

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further the scope of a heterogeneous field that is not easily characterised by shared disciplinary orientations, methodologies, audiences or areas of inquiry and intervention. This diversity is not domesticated in The Companion but actively embraced. Each of the four thematically organised sections stages a dialogue across periods and disciplines, opening up new and often conflicting perspectives on what are emerging as key areas of interest in the critical medical humanities. The concluding chapters to each section do not have the final word in settling debates raised by the contributions; rather, by identifying what is at stake in, achieved by and missing from these discussions, the Afterwords reflect on where they might now lead.

Evidence and Experiment The Companion opens with an exploration of ‘Evidence and Experiment’, juxtaposing ideas and issues that have been central to the logic, identity and anxieties of the medical humanities with those that take the field in new directions. The medical humanities has long understood itself as both challenge and corrective to the hierarchies of evidence that have come to define theoretical, practice-based and policy-oriented instantiations of the biomedical. Work in narrative medicine44 and the phenomenology of health and illness45 has succeeded in highlighting the limitations of evidence-based medicine while at the same time championing humanities-led approaches to making subjective experience more visible and valuable as evidence, particularly in clinical encounters. Evidence has also been a key concern for those arguing for an expanded mobilisation of the arts and humanities within therapeutic46 and educational47 settings: do medical humanities approaches ‘work’, and if so, how, for whom and in what contexts? The critical medical humanities chapters in this section drill more deeply into these issues, not just drawing attention to what is absent from or lacking in the evidence base of biomedicine, as do Rehmann-Sutter and Mahr in their persuasive analysis of ‘The Lived Genome’, but focusing as well on its generative potential, its capacity to produce new subjects and objects of knowledge, as Viney demonstrates in ‘Getting the Measure of Twins’. This section also pushes the medical humanities to engage with new sites and modes of evidence production – from the modelling and data visualisations of systems biology, to the digitised archive of early modern casebooks, to the laboratory and experimental settings of contemporary neuroscience. If evidence, then, is a staple concern of the medical humanities, and one that is addressed here in new and illuminating ways, the experiment – as site, methodology and aesthetic – is something these chapters argue is ripe for further exploration. In the opening chapter, Fitzgerald and Callard urgently call for ‘a significantly reanimated research programme for the medical humanities’. Practices of ‘entanglement’,48 they argue, move the field beyond the dualism implied by its name and, crucially, beyond the fantasies of holism to which mainstream medical humanities work has long been oriented. The notion of experimental entanglement is picked up by contributors across The Companion, resonating especially strongly in this section with Carusi’s ‘Modelling Systems Biomedicine’ and Scheid’s analysis of ‘Holism, Chinese Medicine and Systems

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Ideologies’. The final chapter in ‘Evidence and Experiment’ shows that these terms are inextricably entwined with two further concepts familiar from our discussion of the three ‘Es’ above – ‘ethics’ and ‘experience’ – except that now we are engaged, more precisely, with ‘an ethics that demands an unwillingness to fix the essence of experience’.49 ‘What, if Anything, is the Use of Any of This?’, Magi, Jones and Kelly ask in the concluding chapter to the section: a chapter that harnesses a poetics and politics of disruption to interrogate distinctions between the analysts and bearers of psychotic experience.

The Body and the Senses The second part of The Companion, ‘The Body and the Senses’, looks afresh at one of the most important substantive topics of medical humanities research: the body as it suffers, bears and is transfigured by illness; the irreducibly subjective experience of embodiment that exceeds and eludes the quantified body of biomedicine. Although it has yet to be extensively documented, the medical humanities’ contribution to the wider corporeal turn in the humanities and social sciences50 is continued in the critical contributions of The Companion; however, without losing the focus on pain and the particular qualities of bodily suffering (such as in Macnaughton and Carel’s discussion of COPD), this section takes the sensate body as a starting point. Tracing the interplays of sight and touch, voice and flesh, the chapters are alert to the ways in which our senses may not be shared, cannot be taken for granted, and find various expressions across historical, cultural and political contexts. Richards and Wistreich, for example, discover the historically elusive voice somewhat paradoxically at the heart of Renaissance anatomy in their analysis of ‘embodied thinking’; Tilley and Olsén offer critical insights into the importance of touch in nineteenth-century thinking about visual impairment. The work represented in The Companion could usefully be supplemented by other recent projects, which construct and critically examine historical archives of smell and of the skin.51 The production of bodies and the means by which this is done – whether juridically, scientifically, aesthetically, or through the regulative frameworks of health and social policy – are central concerns of Andrews and Metzl’s compelling critique of the legacy of racialisation in medical imaging, and Dolezal’s examination of the morphological freedom of the posthuman. Continuing Magi, Jones and Kelly’s critical reflections upon the tensions and (dis)continuities between scholarly endeavour, artistic practice and activism, Evans and Cooper’s ‘Reframing Fatness: Critiquing “Obesity” ’ and Allen’s ‘The Body beyond the Anatomy Lab’ explore the ways in which our own bodies – as scholars, artists and activists – are sites through which knowledge is produced, political claims are staked, and experimental methodologies can be explored. Whether living or long dead, surgically transformed or stylistically rendered, our fleshy materiality, it is suggested, is something a critical medical humanities must grapple with in its complexity and diversity, weightiness and consequentiality.

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Mind, Imagination, Affect Far from being abandoned or declared resolved, the questions of corporeality raised in ‘The Body and the Senses’ continue to animate chapters in the third section of The Companion. Opening with Martyn Evans’s reflections on the embodied human nature as scene and source of wonder, and going on to excavate the surrealists’ enchantment with viscera and to interrogate medicine’s role in the perverse logics of state-sanctioned execution, ‘Mind, Imagination, Affect’ resists any easy separation of mind and body, ‘physical’ or ‘mental’ pathology. Far from being universally recognised, these distinctions are peculiar to post-Cartesian thinking; the medieval thought world, as Saunders shows, ‘illuminate[s] the complex inter-relations of mind and body, and probe[s] the power of affect in resonant and suggestive ways’.52 Reaching from the late nineteenth century to the early twenty-first, neurology, neurological impairment and neuroscience are figured in chapters by Salisbury and by Cole and Gallagher as particularly fertile sites for understanding how the phenomenological, the aesthetic and the clinical can be mutually illuminating. The literary – understood as a critical orientation as well as a set of texts – also takes centre-stage in this section, though in ways that again signal a departure from more conventional medical humanities scholarship. If the field has so far been chiefly interested in literature’s capacity to represent experiences of health and illness53 and thus have moral, pedagogic and therapeutic value for readers as well as writers, the literary critical medical humanities, as envisaged here, is concerned more with opening up new perspectives on the history of ideas (including about the nature of mind, imagination and affect), and examining in detail the aesthetic and narrative strategies through which literary texts model cognitive and affective processes. As Garratt argues, this subtle but significant shift in approach ‘further implies a need to ask critical, self-reflexive questions about how aesthetic assumptions are put to work methodologically in medical humanities research’.54

Health, Care, Citizens ‘Health, Care, Citizens’, the title of our fourth and final section, also marks out some intriguing areas for further exploration – the relationship between health and care as qualities, practices and policies; the ways in which citizens show, give, access and benefit from care; and the ways in which the health of the citizenry and the healthy citizen are imagined and produced in different national contexts. While the importance to a critical medical humanities of attending to cultural and historical specificity is articulated across the volume, this section engages most explicitly with ‘the global’. Addressing multiple sites of healthcare, chapters by Bradby, Atkinson and Jolly further interrogate the uneven flows of knowledge, power, bodies, expertise and organs, between them highlighting the capacity of the critical medical humanities to illuminate alliances between biomedical interventions and neo-colonising philosophies and practices’.55 ‘Health, Care, Citizens’ widens the scope of possible

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sources for thinking about health and pathology – Harpin turns to the Broadmoor hospital archive to explore what the history of performance reveals about shifting notions of care, risk and therapy; Sabroe and Withington to the digitised corpus of early modern texts to trace changing notions of ‘counsel’ – but it also showcases new approaches to the more familiar resources of the medical humanities, such as the literary novel. Atkinson, as a social scientist, ‘attend[s] specifically to the issues, rhetoric and modes of argumentation mobilised or disclosed within different imagined scenarios’ in her engagement with literary fiction,56 while Burke develops a ‘symptomatic reading’ of contemporary novelistic and autobiographical accounts of dementia care to understand them not as cultivating compassion and empathy, but rather as manifesting a violence that is profoundly ideological.

Alternative Trajectories through The Companion The Edinburgh Companion to the Critical Medical Humanities is organised thematically in order to highlight key areas of cross-disciplinary interest and activity within critical medical humanities scholarship. However, there are a myriad of alternative pathways through a volume of this size and diversity; here, we outline three other reading trajectories formed by disciplinary specialism, historical period and a broadly spatial or geographical approach. These alternate routes were consciously mapped out by the editorial team and informed our thinking about the shape and scope of the different sections. Less predictable were the further topics of interest that emerged across and between the chapters, surfacing as important sites of concern for the critical medical humanities as the volume took shape. This section will therefore close by addressing a cross-cutting thematic interest in questions of violence, and signalling thematic and methodological concerns around questions of authority and expertise.

Disciplinary Pathways While many of the chapters already bear the hallmarks of interdisciplinary entanglement, literature, philosophy, visual culture, history and the social sciences emerge as the dominant disciplinary specialisms of The Companion. Literature has played a significant role in the medical humanities to date, and The Companion demonstrates that it also has an important place in the critical medical humanities, although – as explained above – with a shift in emphasis from literature’s, and especially narrative’s, representational capacity to more self-reflexive questions of form and function.57 The question of empathy, also central to the narrative turn in the first wave of the medical humanities, is negotiated in a group of chapters that argue for the efficacy of a strategic refusal or denial of empathy in texts that navigate a complex and contested politics of care (Atkinson, Burke, Jolly). Turning to a more methodological focus, Herman’s chapter illuminates the potential of narratology in the context of the critical medical humanities; his specific focus is on animal–human interactions, but the recent rise of cognitive literary studies has signalled the broader potential for narratological literary

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studies to intervene in current debates on the human mind and cognition.58 A final subset of chapters ask what contribution the history of reading might make to the medical humanities: Garratt probes nineteenth-century theories of reading and health, Richards and Wistreich consider the significance of voice in the history of reading aloud, and Saunders (re)views contemporary neuroscience through the lens of reading and affect in the medieval period. Collectively, then, the chapters in The Companion with a distinctively literary focus both fix a critical eye back on the narrative turn in the medical humanities to date, moving away from a model in which the literary text is seen to stand as a straightforward representation of and mode of access to the experience of illness, and signal the potential for new approaches and areas of inquiry. Philosophy, like literature, has closely informed the first wave of the medical humanities. We have discussed above the ongoing importance of phenomenology to the field, indicating the ways in which contributors to The Companion are opening up new ground: key chapters here are by Rehmann-Sutter and Mahr, Jones, Kelly and Magi, Macnaughton and Carel, Juler, Cole and Gallagher, Guenther and Salisbury. Philosophy also draws attention to the potential, and the limits, of bodily materiality: Martyn Evans assesses the place of wonder in grasping the complexities of human embodiment, while Dolezal turns a critical gaze on discourses of freedom in theorisations of the posthuman body. History has also taken a leading role in the medical humanities, and here too The Companion is interested in tracking the ways in which it is pushing into new territories and opening up new perspectives. While we focus under ‘historical pathways’ below on the important contributions to the critical medical humanities being made by scholars in the medieval and early modern periods and in the long nineteenth century, vital work is being carried out across the full historical range and spectrum. New methodologies are also reorienting medical history in relation to the materiality of evidence, with the digital humanities and changing approaches to the archive leading to innovative and collaborative, cross-disciplinary projects; the new opportunities that this brings to the field are addressed by Kassell, Klestinec, and Sabroe and Withington. The Companion deliberately places literary, philosophical and historical approaches alongside, and in conversation with, arts and humanities disciplines that have not been as influential in the medical humanities to date. Visual culture, which encompasses the disciplinary fields of museum studies and art history and practice, is attentive to how the visual arts can help us to (re)conceptualise the body and to probe its position and status within the biomedical imaginary: Biernoff thinks in this context about the representation of pain, Juler about the bodily interior, and Allen about the cadaver. Other chapters attend closely to the visualising technologies of medicine, asking how they construct the subject of their gaze: here, Andrews and Metzl, and Tilley and Olsén both return to the nineteenth century as a key historical moment when such technologies, so pervasive in biomedicine today, were still in formation. If mainstream medical humanities has been largely defined by its championing of the arts and humanities disciplines, the critical medical humanities, we suggest, embraces and is energised by the social sciences, and in particular sub-disciplinary

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areas, such as health geography,59 with a long-standing critical engagement with matters medical. Key chapters here include critiques of public health discourses by Bradby and by Evans and Cooper, as well as the careful and nuanced attention to a politics of care demonstrated by Rebecca Hester in relation to ‘cultural competence’ in medicine, and by Atkinson in the context of the global organ trade. The Companion indicates what the humanities might learn from the social sciences in medical humanities interactions, and conversely how the social sciences might be enriched by engagement with the humanities: historian Withington accordingly draws on the big data methodologies more conventionally associated with the social sciences, while health geographer Atkinson persuasively argues the case for the value of imaginative literature. The editors explicitly invited contributors to reflect on how particular disciplines are responding to, and (re)conceiving their place within, the medical humanities, in part with a view to generating debate and discussion across and between disciplines. These debates are integral to the project of the medical humanities and inform many cross-disciplinary collaborations in the field. An important grouping of chapters is those written by contributors, often from very different subject areas, whose work is marked by a commitment to collaborative thinking: see, for example, Fitzgerald and Callard, Cole and Gallagher, Sabroe and Withington, and Macnaughton and Carel. In reflecting on their own logics of interdisciplinarity, these chapters signal the new questions that can be asked in and through such work: questions that might not have been possible when working within a medical or a humanities discipline alone.

Historical Pathways Thinking and reading historically is, we have already suggested, vital to the project of the critical medical humanities, and a second pathway through the volume highlights two clusters of chapters: those looking at the medieval and early modern periods, and those situated in the long nineteenth century. Pre-Cartesian perspectives on the mind and body offer a key vantage point from which to view, and to historicise in turn, contemporary biomedicine. Saunders turns to the medieval thought world to bring a long historical and cultural perspective to voice hearing, and visionary and hallucinatory experience, identifying in a range of secular and religious texts a suggestive resource for both countering and enriching current models and understandings of these phenomena. Richards and Wistreich turn to the Renaissance anatomy theatre to resituate ideas of voice, text and authority, and Klestinec explores the role and importance of touch in the medical relation. Notably, the historical perspective becomes a vital means through which the predominance of the visual in biomedicine can be contested, and other bodily senses and faculties rise to prominence. Work in the early modern period also portrays a medical institution at a time of rapid transition or change, a useful reminder that biomedicine is itself historically contingent, as well as contested and volatile. As previously discussed, Kassell, Klestinec, and Sabroe and Withington all use the transitional aspect of early modern medicine to different, but complementary, effect.

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Chapters grouped in the long nineteenth century harness the historical in a slightly different mode: here, it is not that then-contemporary medical thinking and practice offer an alternative perspective on the biomedical, but rather that modernity itself is taking shape in this period and we can therefore examine biomedicine at a point when it is still emerging. One group of chapters focuses on the physical treatments of the period: Tilley and Olsén’s exploration of nineteenth-century technologies for the blind thus reads instructively alongside Andrews and Metzl on the racial discourses embedded in nineteenth-century medical imaging techniques, Viney on the racial and eugenic underpinnings of late nineteenth- and early twentieth-century experimentation on twins, and Harpin on the history of theatre production at Broadmoor. Each of these contributors pays careful attention to the imbrication of the medical and the disciplinary, which can have at times surprising and unpredictable effects. A parallel subset of chapters focuses on the development of psychiatric discourses in the long nineteenth century: here, Garratt brings into view the intense engagement of Victorian scientific and psychiatric thought with literature and the aesthetic, and Salisbury continues this dialogue between medical science and the humanities into a discussion of late nineteenth- and early twentieth-century neurology, drawing out its complex intersection with the literary aesthetics of modernism that emerged simultaneously. Extrapolating out from the attention of Garratt and Salisbury to the investment of nineteenth-century scientific thought with and in the humanities, it can be noted that, throughout The Companion, reading historically presses on the concept of the medical humanities as a new phenomenon: a long temporal perspective reveals that the medical humanities should be conceived as integral, and indeed central, to the tradition of Western thought, which repeatedly entangles scientific and humanistic approaches to develop complex ideas relating to evidence, body, affect, mind and care.

Spatial Pathways A third reading trajectory through The Companion can be defined as offering a broadly spatial perspective. Here, two distinct, but complementary, lines of inquiry emerge: the first considers what it means to engage with the medical humanities in the context of globalisation, and the second looks at the sites and spaces opened up by the critical medical humanities. There has been a recent move in the medical humanities towards a critique of the Western-centred focus of the field to date; debate has, however, largely centred on the teaching of medical practitioners, and on expanding the canon of humanities texts that might be used in this context, to include postcolonial authors and/or works by indigenous writers.60 Specifically, little has been done to contest or complicate a binary of the ‘West and the rest’, to think through in more complex terms the messy and uneven entanglement of subjects that globalisation inevitably entails. The first subset of chapters in this category therefore addresses medicine and globalisation with a particular emphasis on mapping or charting the movements and migrations – of people, of bodily organs and of concepts – that define the current landscape of healthcare. Bradby and Atkinson focus

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on the global movement of medical ‘resource’ and consider how an interdisciplinary approach might help to open up contemporary debates around a scarcity of resource and unequal availability and access to it. Chapters by Scheid, Jolly and Hester focus on the migration of concepts or ideas, and the limits or risks that are entailed when one world view meets or intersects with another. Scheid outlines three parallel histories of the concept of ‘holism’, tracing its complex and at times controversial rise to prominence in Chinese medicine and in systems biology, before critiquing the claims for a personalised medicine of current integrationists of the two models, arguing that the resulting science is much more reductionist than its proponents claim. Jolly and Hester are both concerned, at different scales, with the question of cultural competence. Jolly problematises the notion at a global level, by identifying the postcolonising terms on which biomedical aid is offered to indigenous subjects, meaning that access to healthcare is typically obtained through a renunciation of cultural identity (Fanon comes back into view here as a timely intellectual companion).61 Hester adopts a national focus, taking issue with cultural competence in medical training, predominantly in the US, although with an increasing global influence, arguing that claims for increased knowledge of cultural Others is as likely to lead to more, not less, inequity, exploitation and abuse of patients from non-dominant backgrounds. Running across the chapters by Scheid, Jolly and Hester is a common concern to position biomedicine as a single, albeit dominant, paradigm, which should be placed in context with, and relativised by, alternative models; in this sense, the geographical or spatial axis provides a parallel to the historical frame discussed in the preceding paragraphs, in offering an effective standpoint for critique. The second subset of chapters with a spatial focus opens up the question of the medical site. At the beginning of this Introduction, we outlined the ‘primal scene’ of the medical humanities, arguing that the field has been particularly invested in the clinical scenario of communicating to a cancer patient news of her life-threatening illness. Fitzgerald and Callard focus their gaze on another, equally charged site, which again involves potentially terminal, end-of-life care: the patient on the life support machine. They observe of the potential for the critical medical humanities to open up to view a range of alternative medical spaces: Within such an imaginary, one could argue that the most pressing sites of the biopolitical redistribution of bodily potencies (with all that they connote in relation to questions of medicine and health) might not include the bioethically over-invested scene of the prone figure hooked up to a life support machine; one might then explore, instead, assemblages of welfare policies, psychometric tests, affective dispositions and algorithmic predictions that are in the process of redistributing categories and manifestations of productive labour and idleness under practices of ‘workfare’. Or, to take another example, one might approach a healthcare ‘institution’ not as a conceptual and physical edifice whose histories we have become used to tracing (the NHS, the World Health Organisation, the hospital), but as something that gives form or order precisely by ‘cutting’ or ‘disentangling’ entities from a heterogeneous field.62

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Fitzgerald and Callard remind us that the ‘sites’ of medicine are not necessarily spatial, but can include policies (see, for example, Bradby) or the ‘site’ of the diagnosis itself (see Andrews and Metzl on drapetomania, or Evans and Cooper on fatness). Acknowledging the importance of expanding our notion of what might constitute a medical ‘site’, it is nevertheless instructive in the context of The Companion to pause and consider the range of physical spaces that the contributors open up and enter into. A poignant, and pointed, counterpoint to Fitzgerald and Callard’s patient on the life support machine is Guenther’s executed prisoner of the US penal system, whose prone body occupies centre-stage in a theatre that mimics as closely as possible the apparatus and rituals of end-of-life care. Guenther’s analysis of the staging of the execution, as well as of the politics of access to the space, in turn speaks powerfully to Allen’s reflections on the spaces of the morgue and the tissue laboratory, and to Dolezal on the plastic surgery operating theatre; indeed, both Allen and Dolezal point to the attraction of such spaces for contemporary performance artists, with French artist Orlan a figure of particular interest. Other chapters focus on the research laboratory as a key site for the critical medical humanities, marking a conscious and deliberate move away from the clinical and pedagogical focus of the first wave of medical humanities: see, for example, Carusi or Viney. The volume also registers the ways in which health, medical and clinical concerns and discourses spill out beyond the sites over which the health sectors and system have direct jurisdiction, and into the values, morality and experiences of everyday spaces (see, for example, Burke, Dolezal, Evans and Cooper, Herman, and Rehmann-Sutter and Mahr).63 In expanding either the concept of the medical site, or the range of spaces that might be designated as such, the point, as Fitzgerald and Callard note, is not simply ‘to introduce a new range of topics’,64 or indeed of topoi, that might be designated as coming under the purview of the medical humanities; it is not, in other words, a colonising venture. Rather, the importance of attending to such sites would be to interrogate what sites and/or spaces come to matter, and with what material and political effects; to think about what other sites and spaces are thereby obscured from view; and to probe critically the range of human and non-human intraactions and material practices that take place within these spaces, noting in particular which bodies come to count, or are discounted, by and through them.

Violence The theme of violence emerged as an area of particular concern for the critical medical humanities as the chapters of The Companion were read in conjunction with each other. For contributors taking a more oppositional stance to biomedicine, violence is perceived to be institutional and systemic, and is positioned as integral to the (neo) colonial, legal, social and economic underpinnings of contemporary healthcare systems. Chapters by Atkinson, Burke and Hester move between personal stories or experiences of suffering and the medical institutions that (fail to) respond to and treat this distress. The point is not to contribute to or perpetuate a culture of blame, which wrongly singles out individuals as targets of attack, but rather to pressure the concept

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of care by asking us to extrapolate out from narratives of individual pain to broader political questions and concerns. Contributors writing from the perspective of philosophy and of visual culture – including Allen, Biernoff and Dolezal – bring an alternative focus to the theme, attending to the often troubled (and troubling) question of the artistic representation of violence and pain, which inevitably touches on issues of aesthetics, and even of beauty.65 Another powerful grouping of chapters aligns with a notion of the critical that is embedded in a politics of implication. Here, the designation of the boundary between human and non-human, and its material and tangible effect on which bodies are seen to count as deserving of rights and protection, and which are not, becomes crucial. Harpin and Guenther address the implications of the incarcerated body, which is denied citizenship and which therefore occupies a site of vulnerability to potential violence and harm. Giorgio Agamben’s notion of the homo sacer becomes particularly resonant in this context, in its identification of a body that is deprived of rights and that can be killed, without the killer being regarded as a murderer;66 Guenther’s executed prisoner could be designated within this category, as could the dark side of Viney’s twin research, most famously exemplified by Joseph Mengele’s twin experiments at Auschwitz concentration camp in the Second World War. Although Herman does not address the highly charged issue of animal experimentation in medical research, this topic raises not only the spectre of the homo sacer but also the questions of agency, affect and feeling that are central to The Companion. The issue of which bodies come to matter, and more crucially, which do not, will be ever more central to the medical humanities as we move increasingly towards a bioscience that operates in terms of what Susan Merrill Squier has aptly named ‘liminal lives’: including, amongst others, in vitro embryos and cellular and tissue cultures.67

Authority and Expertise The final category that has surfaced as central to the current concerns of the medical humanities is the question of authority or expertise. This has been a (if not the) dominant issue in the first wave of the medical humanities, which has taken much of its impetus from a shifting of authority from the doctor’s professional expertise to the patient’s experience, with the illness narrative a key vehicle for achieving this transition of authority.68 The oppositional chapters in The Companion continue this politics, although crucially with an emphasis less on individual patient experience and more on broader institutional and systemic problems. Thus, if Guenther, Hester and Jolly all position biomedical knowledge as a potentially harmful, if not violent, form of authority, then this is because of its legal, social and colonial underpinnings. Equally, where contributors stress the importance of ‘lay knowledge’ to medical understanding, there is a notable move away from an empathetic reading of the illness narrative and an opening up of the knotted and complex problems of form and function. Central to this discussion is the chapter by Magi, Jones and Kelly, which takes up the question of first-person experience in the context of psychiatric discourse. The authors are unequivocal about the value of ‘patient’ experience in and for psychiatric medicine,

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as well as about its overall absence to date: ‘Certain modalities, experiences, versions or variants of “symptoms” are regularly privileged or fetishised – and those who control these terms and constructs and their academic lives, are rarely if ever themselves mad.’69 Nevertheless, voicing ‘the patient perspective’ is no simple or straightforward matter. On the one hand, Magi, Jones and Kelly point to the important issue of representativeness, asking to what extent one person’s experience can or should be taken to stand for that of others: You have enduring concerns about representation and situated knowledge claims. You may indeed know something from living with psychosis. You have concerns about the risks of essentialism implicit in these sorts of knowledge. Your experimental or theoretical pursuits may be more a reflection of your particular proclivities and less an affect of your status as psychotic subjects.70 On the other hand, the authors trouble the issue of representation itself, noting (like Salisbury) that the forms of academic and narrative writing do not necessarily offer the most appropriate vehicles for conveying the illness experience: ‘Here, to . . . refashion is a poetics of care: it was no longer possible to keep on addressing imagined readers with the same language sequences, spacing, syntax, thesis and conclusion structure that had so often trapped us.’71 Here, then, there is a close attention to how alternative forms of authority might be written and read: a question that is also taken up by Herman, as he asks why the scientific case study acts as a privileged mode of discourse in comparison to the literary form of the anecdote. Running across The Companion’s various engagements with the question of expertise, a further shift might also be discerned in terms of intended or implied addressee: if the first wave of the medical humanities regarded the primary recipient of the illness narrative to be the clinical practitioner, who would then deliver a more empathetic and understanding mode of treatment, the critical medical humanities also aims to reach and interact with medical research, be that in the context of genetics (Rehmann-Sutter and Mahr) or of psychiatry (Magi, Jones and Kelly), and to influence questions of policy and of diagnosis. We have already identified the realignment of expertise as central to the question of entanglement. As noted above, a fundamental recalibration of authority can be discerned in Carusi’s location of agency in science’s objects as well as in the human researcher, and in Herman’s analysis of the role and agency of the animal in animalassisted therapies. A longer historical view can also shed light on why and how certain modes of medical authority have come to matter more than others. Klestinec remarks suggestively that as scientific authority has become aligned with the visual, the authoritative gaze of the (male) doctor has taken precedence over the touch of the midwife, and she advocates that one task for the critical medical humanities might be to enquire into how the relations between, and appropriations of, the senses inform questions of hierarchy and authority. Relatedly, Richards and Wistreich open up a historical perspective on ‘lay’ knowledge and expertise by attending to the role and importance of voice, while Sabroe and Withington examine the word ‘counsel’ from a cross-period

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perspective to draw out shifts of authority in the clinical encounter. Entanglement also informs a final aspect of authority and expertise with which the critical medical humanities is centrally engaged: the question of interdisciplinarity. This volume asks how modes of collaborative and cross-disciplinary working might negotiate the challenges to academic and disciplinary expertise that are inevitably entailed. Equally, we think about how large research projects that draw in and on academic, medical and ‘lay’ expertise can navigate problems and assumptions related to institutional hierarchies and privileges. Here, again, there is (and can be) no single or simple response, but the complexities that the issues raise for the field are eloquently addressed in the opening chapter by Fitzgerald and Callard, which elaborates the concept of entanglement to indicate one productive way forwards. Reading across the volume, it is clear that issues of authority and expertise will remain vital, invigorating and animating topics (and topoi) for the medical humanities, as the field continues to negotiate and to challenge disciplinary, institutional and political boundaries and hierarchies, and to interrogate how and why some bodies, discourses and practices have come to matter more than others. This Introduction has mapped out a number of routes for readers of the volume to follow, although there are of course innumerable alternative pathways that could be taken. Our hope is that these suggested trajectories will assist readers of many disciplines, and of interdisciplinary endeavour, to engage with the volume. The Companion includes contributions not only by scholars who are well established in medical humanities but also by academics and practitioners who are new to the area; we have likewise invited chapters from early career researchers alongside more senior figures. In doing so, we have sought throughout the editorial process to remain faithful to a forwardfacing vision of, and commitment to, scholarship within the field. Our aim is to gather together the most exciting voices and ideas currently defining the medical humanities, in the anticipation that this will generate a critical momentum in the field, and provide in turn a launch point for further waves of the medical humanities yet to come.

Notes 1. The term biomedicine is used advisedly and refers to the evidence-based scientific model of medicine that originates in the West and has come to dominate global healthcare from the latter half of the twentieth century. 2. With thanks to Jane Macnaughton for drawing our attention to the importance of successive waves. 3. Questions of the history, purpose and value of the medical humanities (particularly as perceived by the medical establishment) have come sharply into focus in recent years and are comprehensively addressed in a number of important publications: Johanna Shapiro, Jack Coulehan, Delese Wear and Martha Montello, ‘Medical Humanities and Their Discontents: Definitions, Critiques, and Implications’, Academic Medicine: Journal of the Association of American Medical Colleges 84.2 (2009), pp. 192–8; Howard Brody, ‘Defining the Medical Humanities: Three Conceptions and Three Narratives’, Journal of Medical Humanities 32.1 (2011), pp. 1–7; Brian Hurwitz, ‘Medical Humanities: Lineage, Excursionary Sketch

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5. 6.

7. 8. 9.

10. 11.

12.

13.

14. 15.

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and Rationale’, Journal of Medical Ethics 39.11 (2013), pp. 672–4; Victoria Bates and Sam Goodman, ‘Critical Conversations: Establishing Dialogue in the Medical Humanities’, in Victoria Bates, Alan Bleakley and Sam Goodman (eds), Medicine, Health and the Arts: Approaches to the Medical Humanities (Abingdon: Routledge, 2014), pp. 3–13; Therese Jones, ‘Oh! The Humanit(ies)! Dissent, Democracy, and Danger’, Medicine, Health and the Arts, pp. 27–38; Alan Bleakley and Therese Jones, ‘Appendix: A Timeline of the Medical Humanities’, Medicine, Health and the Arts, pp. 281–4; Therese Jones, Delese Wear and Lester D. Friedman, ‘The Why, What, and How of the Health Humanities’, in Health Humanities Reader (New Brunswick, NJ: Rutgers University Press, 2014), pp. 1–9; Alan Bleakley, Medical Humanities and Medical Education: How the Medical Humanities Can Shape Better Doctors (London and New York: Routledge, 2015). The prominence of cancer within mainstream medical humanities is reflected by the enduring influence of Susan Sontag’s work, and has recently been taken up by Paul Crawford et al., who note the uneven distribution of interest across health conditions in the field. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus & Giroux, 1978); Barbara Clow, ‘ “Who’s Afraid of Susan Sontag?” or, the Myths and Metaphors of Cancer Reconsidered’, Social History of Medicine 14.2 (2001), pp. 293–312; Paul Crawford, Brian Brown, Victoria Tischler and Brian Abrams, Health Humanities (Basingstoke: Palgrave Macmillan, 2015), p. 80. See Brody, ‘Defining the Medical Humanities’, pp. 1–7. Robert Arnott, Gillie Bolton, Martyn Evans, Ilora Finlay, Jane Macnaughton, Richard Meakin and William Reid, ‘Proposal for an Academic Association for Medical Humanities’, Journal of Medical Ethics: Medical Humanities 27 (2001), pp. 104–5. Ibid., p. 105. Bradley Lewis, ‘Reading Cultural Studies of Medicine’, Journal of Medical Humanities 19.1 (1998), pp. 9–24 (p. 9). See Alan Bleakley, Medical Humanities and Medical Education: How the Medical Humanities Can Shape Better Doctors (London and New York: Routledge, 2015) for a recent work that begins to address how a critical medical humanities might inform medical education. Arthur Kleinman, The Illness Narratives: Suffering, Healing and the Human Condition (New York: Basic Books, 1988). Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford: Oxford University Press, 2006); Katherine Montgomery, Doctor’s Stories: The Narrative Structure of Medical Knowledge (Princeton: Princeton University Press, 1995). Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, Medical Humanities 37 (2011), pp. 73–8; see also Claire McKechnie, ‘Anxieties of Communication: The Limits of Narrative in the Medical Humanities’, Medical Humanities 10 (2014), pp. 1–6. See Paul Robertson, ‘Music, Therapy and Technology: An Opinion Piece’, Medicine, Health and the Arts, pp. 2237–45; Ian C. Williams, ‘Graphic Medicine: The Portrayal of Illness in Underground and Autobiographical Comics’, Medicine, Health and the Arts, pp. 64–84. Jeffrey Bishop, ‘Rejecting Medical Humanism: Medical Humanities and the Metaphysics of Medicine’, Journal of Medical Humanities 29 (2008), pp. 15–25 (p. 15). See Sarah Atkinson in this volume; see also Sarah Atkinson, Jane Macnaughton, Corinne Saunders and Martyn Evans, ‘The Art of Medicine: Cool Intimacies of Care for Clinical Practice’, The Lancet 376 (2010), pp. 1732–3.

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16. For further recent discussion of the critical medical humanities, see also Sarah Atkinson, Bethan Evans, Angela Woods and R. Kearns, ‘ “The Medical” and “Health” in a Critical Medical Humanities’, Journal of Medical Humanities 36 (2015), pp. 71–81. The term has also been elaborated, to different effect, by Alan Bleakley; see Bleakley, ‘Towards a “Critical Medical Humanities” ’, Medicine, Health and the Arts, pp. 17–26. 17. William Viney, Felicity Callard and Angela Woods, ‘Critical Medical Humanities: Embracing Entanglement, Taking Risks’, Medical Humanities 41 (2015), pp. 2–7 (p. 3). 18. Ibid. 19. Volker Scheid, ‘Holism, Chinese Medicine and Systems Ideologies: Rewriting the Past to Imagine the Future’, in this volume, p. 82. 20. For an illuminating discussion of Fanon and medicine, see Hussein Abdilahi Bulhan, Frantz Fanon and the Psychology of Oppression (New York: Plenum Press, 1985). 21. Particular thanks to Jennifer Richards for her framing of this paragraph. 22. Sara Ahmed, The Promise of Happiness (Durham, NC: Duke University Press, 2010). 23. Viney et al., ‘Critical Medical Humanities: Embracing Entanglement, Taking Risks’, p. 4. 24. Karen Barad, Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning (Durham, NC: Duke University Press, 2007), p. 26. 25. Des Fitzgerald and Felicity Callard, ‘Entangling the Medical Humanities’, in this volume, p. 35. 26. Annamaria Carusi, ‘Modelling Systems Biomedicine: Intertwinement and “the Real” ’, in this volume, p. 51. 27. William Viney, ‘Getting the Measure of Twins’, in this volume, p. 114. 28. Mel Y. Chen, Animacies: Biopolitics, Racial Mattering and Queer Affect (Durham, NC: Duke University Press, 2012). 29. Viney, ‘Getting the Measure of Twins’, p. 116. 30. For a suggestive collection that combines feminism and phenomenology, see Kristin Zeiler and Lisa Folkmarson Kall (eds), Feminist Phenomenology and Medicine (New York: SUNY Press, 2014). 31. See, for example, Shaun Gallagher and Dan Zahavi, The Phenomenological Mind (London: Routledge, 2008); Shaun Gallagher, How the Body Shapes the Mind (Oxford and New York: Oxford University Press, 2005). 32. Jill Magi, Nev Jones and Timothy Kelly, ‘How Are/Our Work: What, if Anything, is the Use of This?’, in this volume, p. 151. 33. It is notable that the extension of phenomenology to pain management, drawing on firstperson accounts of pain, is coincident with Joanna Bourke’s influential challenge to Elaine Scarry’s account of pain as incommunicable. See, respectively, Joanna Bourke, The Story of Pain from Prayer to Painkillers (Oxford: Oxford University Press, 2014); Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (Oxford: Oxford University Press, 1985). 34. Margrit Shildrick, ‘Critical Disability Studies: Rethinking the Conventions for the Age of Postmodernity’, in Nick Watson, Alan Roulstone and Carol Thomas (eds), Routledge Handbook of Disability Studies (Abingdon: Routledge, 2012), pp. 30–41. See also Rebecca Mallett and Katherine Runswick-Cole, Approaching Disability: Critical Issues and Perspectives (Abingdon: Routledge, 2014); Helen Meekosha and Russell Shuttleworth, ‘What’s So Critical About Critical Disability Studies?’, Australian Journal of Human Rights 15.1 (2009), pp. 47–75.

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35. For a fuller discussion of this shift in critical disability studies and its implications, see Dan Goodley, ‘Dis/entangling Critical Disability Studies’, Disability and Society 28.5 (2013), pp. 631–44 (pp. 634–8). 36. Ibid., pp. 638–9. 37. The journal is titled the Journal for Critical Animal Studies and the monograph series is published by Brill/Rodopi. 38. See, for example, Mark Bekoff, The Emotional Lives of Animals (Novato, CL: New World Library, 2007); Jacob von Uexkull, A Foray into the Worlds of Humans and Animals, trans. Joseph D. O’Neil (Minneapolis and London: University of Minnesota Press, 2010); and Lorraine Daston and Gregg Mitman (eds), Thinking with Animals: New Perspectives on Anthropomorphism (New York: Columbia University Press, 2005). 39. For a collection of essays that explores the potential of feminist theory on care in relation to animal rights, see Josephine Donovan and Carol J. Adams (eds), The Feminist Care Tradition in Animal Ethics: A Reader (New York: Columbia University Press, 2007). See also Cass R. Sunstein and Martha C. Nussbaum (eds), Animal Rights: Current Debates and New Directions (Oxford and New York: Oxford University Press, 2006). 40. The widespread interest in human rights in the academy is evident in the number of dedicated research centres and institutes in this field, and the growth in specialist programmes. The area is concerned with the analysis of a range of human rights issues, including international justice, human rights in the context of global poverty/resource, atrocities and activism. 41. See, for example, Jane Bennett, Vibrant Matter: A Political Ecology of Things (Durham, NC, and London: Duke University Press, 2010); Diane Coole and Samantha Frost (eds), New Materialisms: Ontology, Agency, and Politics (Durham, NC, and London: Duke University Press, 2010). 42. See Elizabeth Grosz, Becoming Undone: Darwinian Reflections on Life, Politics and Art (Durham, NC, and London: Duke University Press, 2011); Donna J. Haraway, When Species Meet (Minneapolis and London: University of Minnesota Press, 2007); and Elizabeth A. Wilson, Gut Feminism (Durham, NC, and London: Duke University Press, 2015). 43. Stacy Alaimo and Susan Hekman, ‘Introduction: Emerging Models of Materiality in Feminist Theory’, in Stacy Alaimo and Susan Hekman (eds), Material Feminisms (Bloomington: Indiana University Press, 2008), pp. 1–22 (p. 4). 44. Brian Hurwitz, Trisha Greenhalgh and Vieda Skultans (eds), Narrative Research in Health and Illness (Malden, MA: BMJ Books, 2004); Trisha Greenhalgh, ‘Narrative Based Medicine in an Evidence Based World’, BMJ: British Medical Journal 318.7179 (1999), pp. 323–5; Trisha Greenhalgh and Brian Hurwitz, ‘Narrative Based Medicine: Why Study Narrative?’, BMJ (Clinical Research Ed.) 318.7175 (2 January 1999), pp. 48–50. 45. S. Kay Toombs, The Meaning of Illness: A Phenomenological Account of the Different Perspectives of Physician and Patient (Dordrecht: Kluwer Academic, 1993) (accessed 31 May 2015); S. Kay Toombs (ed.), Handbook of Phenomenology and Medicine, Philosophy and Medicine vol. 68, (Dordrecht: Springer Netherlands, 2001); Havi Carel, Illness: The Cry of the Flesh, revised edition (London: Routledge, 2014). 46. Crawford et al., Health Humanities. 47. Bleakley, Medical Humanities and Medical Education. 48. Fitzgerald and Callard, ‘Entangling the Critical Medical Humanities’, p. 45.

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49. Magi et al., ‘How Are/Our Work’, p. 136. 50. Maxine Sheets-Johnstone, The Corporeal Turn: An Interdisciplinary Reader (Exeter and Charlottesville, VA: Imprint Academic, 2009). 51. Jonathan Reinarz and Kevin Siena, Past Scents: Historical Perspectives on Smell (Champaign: University of Illinois Press, 2014); Jonathan Reinarz (ed.), A Medical History of Skin: Scratching the Surface (London: Pickering & Chatto, 2013); Steven Connor, The Book of Skin (London: Reaktion; Ithaca, NY: University of Cornell Press, 2004). 52. Corinne Saunders, ‘Voices and Visions: Mind, Body and Affect in Medieval Writing’, in this volume, p. 411. 53. See, for example, the journal Literature and Medicine, founded in 1982 by the Johns Hopkins University Press, and the Arts and Humanities Research Council (AHRC)-funded Madness and Literature Network (accessed 3 July 2015). 54. Peter Garratt, ‘Victorian Literary Aesthetics and Mental Pathology’, in this volume, p. 430. 55. See in particular Rosemary J. Jolly, ‘Fictions of the Human Right to Health: Writing Against the Postcolonialising Exotic in Western Medicine’, in this volume, pp. 527–40. 56. Sarah Atkinson, ‘Care, Kidneys and Clones: The Distance of Space, Time and Imagination’, in this volume, p. 611. 57. Anne Whitehead, ‘Medical Humanities: A Literary Perspective’, in Medicine, Health and the Arts, pp. 101–27. 58. See, for example, Simon Jacques Juleen (ed.), Cognitive Literary Studies: Current Themes and New Directions (Austin: University of Texas Press, 2013); Lisa Zunshine (ed.), The Oxford Handbook of Cognitive Literary Studies (Oxford and New York: Oxford University Press, 2015); Lars Barmaerts, Dirk de Geest, Luc Herman and Bart Vervaeck (eds), Stories and Minds: Cognitive Approaches to Literary Narrative (Lincoln, NB: University of Nebraska Press, 2013); Gary D. Fireman, Ted E.McVay and Owen J. Flanagan (eds), Narrative and Consciousness: Literature, Psychology and the Brain (New York and Oxford: Oxford University Press, 2003). 59. See Sarah Atkinson, Ronan Foley and Hester Parr, ‘Introduction: Spatial Perspectives and Medical Humanities’, Journal of Medical Humanities 36.1 (2015), pp. 1–4; Sarah Atkinson, Victoria Lawson and Janine Wiles, ‘Care of the Body: Spaces of Practice’, Social and Cultural Geography 12.6 (2011), pp. 536–72; Sarah Atkinson, ‘Scales of Care and Responsibility: Debating the Surgically Globalised Body’, Social and Cultural Geography 12.6 (2011), pp. 623–37. 60. See, for example, Claire Hooker and Estelle Noonan, ‘Medical Humanities as Expressive of Western Culture’, Medical Humanities 37.2 (2011), pp. 79–84. ‘Global Medical Humanities’ was the designated theme of the 2013 Association of Medical Humanities Conference (University of Aberdeen). 61. See Frantz Fanon, ‘Medicine and Colonialism’, Studies in a Dying Colonialism, trans. Haaken Chevalier (London: Earthscan, 1989), pp. 121–46. 62. Fitzgerald and Callard, ‘Entangling the Medical Humanities’, p. 42. 63. Thanks to Sarah Atkinson for bringing this point to our attention. 64. Fitzgerald and Callard, ‘Entangling the Medical Humanities’, p. 42. 65. For more on this, see Corinne Saunders, Jane Macnaughton and David Fuller (eds), The Recovery of Beauty: Arts, Culture, Medicine (Basingstoke: Palgrave, 2015). 66. Giorgio Agamben, Homo Sacer: Sovereign Power and Bare Life, trans. Daniel HellerRoazen (Bloomington: Stanford University Press, 1998).

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67. Susan Merrill Squier, Liminal Lives: Imagining the Human at the Frontiers of Biomedicine (Durham, NC, and London: Duke University Press, 2004). See also Kaushik Sunder Rajan, Biocapital: The Constitution of Postgenomic Life (Durham, NC, and London: Duke University Press, 2006) and Melinda Cooper, Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era (Seattle and London: University of Washington Press, 2008). 68. See Arthur W. Frank, The Wounded Storyteller (Chicago: University of Chicago Press, 1995); Arthur Kleinman, The Illness Narratives; Rita Charon, Narrative Medicine. 69. Magi et al., ‘How Are/Our Work’, p. 138. 70. Ibid., pp. 144–5. 71. Ibid., p. 151.

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Part I Evidence and Experiment

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1 ENTANGLING THE MEDICAL HUMANITIES Des Fitzgerald and Felicity Callard

Introduction

T

he medical humanities are at a critical juncture. On the one hand, practitioners of this field can bask in their recent successes: in the UK, at least, what was once a loose set of intuitions – broadly about animating the clinical and research spaces of biomedicine with concepts and methods from the humanities – has become a visible and coherent set of interventions, with its own journals, conferences, centres, funding streams and students.1 On the other hand, the growth, coherence and stratification of this heterogeneous domain have raised the spectre of just what, exactly, the medical humanities is growing into.2 In particular, scholars have begun to worry that the success of the medical humanities is tied up with being useful to biomedicine, that the medical humanities has been able to establish itself only by appearing as the domain of pleasant (but more or less inconsequential) helpmeets – lurking hopefully, poetry books in hand, at the edges of the clinical encounter’s ‘primal scene’.3 This is, we know, a caricature; still, it is not without its truth. Some, then, have begun to ask what a more critical medical humanities would look like: how might the methodological and intellectual legacies of the humanities intervene more consequentially in the clinical research practices of biomedicine – situating accounts of illness, suffering, intervention and cure in a much thicker4 attention to the social, human and cultural contexts in which those accounts, as well as the bodies to which they attend, become both thinkable and visible?5 Our contribution to this space is to focus on the ‘medical humanities’ as an explicitly interdisciplinary endeavour – with a specifically integrationist intent. In what follows, we explore the contours of the methodological and conceptual space that crosses the humanities and the medical sciences; in particular, we open up the relationship that the medical humanities, including its many inheritances, has to the practices and apparatuses of the biomedical sciences. We are especially interested in whether the concerns, objects, methods and preoccupations of the medical humanities, not least the figure of the human at their centre, are, in fact, neatly separable or dissociable from the concerns, objects, methods and preoccupations of the medical and life sciences. And if these are – as we contend – actually not very separable at all; if the figures and preoccupations of the medical humanities are, in fact, deeply and irretrievably

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entangled in the vital, corporeal and physiological commitments of biomedicine; then, beyond well-rehearsed concessions to inter- and trans-disciplinarity, how might we more critically imagine what, exactly, a medical humanities practice is going to look like in the present century? This chapter is part of a wider set of interventions in which we are challenging some of the dominant ways in which interdisciplinary spaces are being conceptualised.6 Our aim is to open up the topology, territory and traffic of the ‘medical humanities’ as it has lately emerged; in particular, we want to disrupt an intellectual economy in which all animating liveliness is accrued by the humanities, and all hard-nosed scientific expertise by the biomedical sciences. Our argument has four steps: firstly, we focus on how much of the conceptual and practical underpinning of the medical humanities is premised on a model of integration, and we ask whether much of the theoretically and biologically conservative stance of the medical humanities can be traced to this image; in the second and third sections, we introduce a counter-image – entanglement – drawn especially from the work of Karen Barad, and explore how this helps us to move beyond the integrationist account; finally, we focus on deployments of the ‘human’ in the medical humanities, to show how entanglement can reinscribe – and reanimate – some of the central preoccupations of this literature.

Being Integrated Over a decade ago, just before the 2004 annual meeting of the Association for Medical Humanities, Martyn Evans and Jane Macnaughton reflected on the field’s relationship to inter- and multi-disciplinarity. Arguing against a model that positions the medical humanities as a series of polite exchanges between a range of disciplines, Evans and Macnaughton called instead for a particular form of interdisciplinarity in the medical humanities – defined as ‘the engagement of disciplines one with another, and more particularly with subject matter that somehow both straddles the disciplines and falls between them’.7 To make this case, Evans and Macnaughton distinguished between two modes in which the medical humanities are practised: in one, scholars from different disciplines gather around a shared preoccupation, but ‘with each discipline . . . essentially retaining its own unique viewpoint and writing from its own literature’.8 In the other, more ‘radical’ model, scholars instead depart from their own discipline, and: integrate the viewpoints of whichever disciplines seem most relevant to the questions they are asking . . . . [These scholars] will not be constrained within the viewpoint of historian, anthropologist or philosopher but will build a perspective that is unique to the discipline called ‘medical humanities’.9 Evans and Macnaughton, while acknowledging the risks of this endeavour (not least to the job prospects of junior pioneers), advocated strongly for the integrationist mode: ‘medical humanities is by nature an interdisciplinary study’, they pointed out, ‘and in this way it can make its most effective contributions to knowledge and to teaching.’10 Rather than simply developing a series of interesting conversations across boundaries,

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the medical humanities must, Evans and Macnaughton argued, bring different disciplines together: ‘we need to encourage young academics into the field’, they insisted, ‘whose doctoral studies will make them into interdisciplinarians.’11 Some of what is at stake here can be traced to the pragmatics of intellectual entrepreneurship. But we also suggest that this contribution forms a careful and succinct distillation of a vital debate – between the singular and the plural, or the additive and the integrative – that surrounds discussions of just what kind of field the medical humanities might or should be. A few years earlier, Evans and Greaves,12 in promoting the launch of the journal Medical Humanities, and in offering another equally self-conscious ‘foundational’ moment for the constitution of the field, committed their endeavour to an ‘integrated’ and thus more ‘ambitious’ vision for the medical humanities – ‘whereby the nature, goals, and knowledge base of clinical medicine itself are seen as shaped by the understanding and relief of human bodily suffering.’13 Or, as Arnott et al. put it in their ‘Proposal for an Academic Association for Medical Humanities’: The medical humanities should be viewed as integral to medicine (i.e. as constitutive of our understanding of medicine’s nature and goals, alongside the medical sciences rather than as a series of optional extras to an essentially scientific conception of medicine.14 Similar images can be discerned elsewhere – in desires, for example, that the medical humanities ‘overcome the separation’ of clinical and humanistic inquiry,15 or in hopes that the humanities will be ‘incorporated into educational activities to help students examine and, at times, contest the process, values, and goals of medical practice’.16 Of course, tropes of ‘integration’ or ‘unification’ are far from limited to the medical humanities; other recent interdisciplinary endeavours have also been gripped by such language of integration.17 Given the current pull that interdisciplinarity exerts on the academy today, we treat the domain of the medical humanities as an exemplary – though far from unique – site through which to explore and challenge the dominant topologies, abstractions and utopian endpoints that govern the terrain of interdisciplinarity. Many of the clarion calls that have been made on behalf of the medical humanities rely implicitly or explicitly on a particular kind of medical holism. This is the ‘perception’, as Brian Hurwitz and Paul Dakin put it: that science alone (or science with additive glances that take in ethics and the social sciences) provides insufficient overall foundation for holistic understandings of the interaction between health, illness and disease.18 Such a holism, in its turn, justifies and requires some more integral conception of medical education and research involving the humanities, broadly interpreted – a view of the ‘medical endeavour’ that is ‘part science, part craft and part art’.19 Or, as Gillie Bolton puts it: Medical and healthcare practice, education and research primarily concern individual people, each of whom, made up of inextricably linked psychological, emotional, spiritual and physical elements, is also inevitably impinged upon by cultural and social forces.20

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In this view, holistic understandings of the body, as well as its illnesses, require much richer conceptions of both doctoring and healing – the medical humanities must thus be integral to, or incorporated in, medical education and research. There are two things to pay attention to here: one is an imaginary of what the medical humanities must be – integrative, holistic, rounded, ambitious and so on. The other is a metaphorical repertoire – a set of received images, terms and likenesses – that works to license this imaginary, and more precisely, to spatialise the territory between, across and/or through humanistic and clinical thought. Our interest is thus in what precisely is intended by – and what is mobilised through – an insistence that the medical humanities must proceed according to a spatial logic of integration. Because it seems to us that if this integrated, singular medical humanities is preferable to a multi-disciplinary commitment to polite (yet determinedly insular) exchange, still it contains its own commitment to a particular ‘regime of the inter-’. If the commitment to an integrated medical humanities has indeed, in recent years, been an important and even radical move for the emergence of this field, we want to claim that it none the less mobilises a very particular account (let us say: a decidedly conservative account) of what kinds of things disciplines are; about what forms of spatial arrangement position them against one another; about what relations of exchange are appropriate across them; and about what must thereby constitute the, variously, human, cultural, biological and embodied agencies to which they attend. To be blunt: we are not sure whether any serious ambition to comprehend, and to intervene in, the density, complexity, directionality and capacity of traffic across this space can be at all moved by a desire for ‘integration’ – including the very space of ‘the inter-’ in which this desire operates. We argue that a more critical conception of the medical humanities needs to bring into question the ‘inter-’ of the ‘interdisciplinary’ medical humanities. Can the intellectual space of the medical humanities more radically reconfigure the objects, agencies and practices of clinical attention, beyond the now rather sterile distinction between a multi- and inter-disciplinarity? Beyond the territory of the ‘inter-’, can we imagine a more risky and experimental medical humanities? Can we mobilise a medical humanities that is not only a novel interdiscipline, gathering up different things into an institutionally significant whole, but also a much more ambiguous and risky intellectual space – one willing to navigate the deep entanglements of subjectivity, experience, pathology, incorporation, and so on, which cut across the ways in which we understand both the human and her medicine today?

Getting Entangled In recent years, ‘entanglement’, a term central to twentieth-century quantum physics,21 has been widely used across a host of literatures in the humanities and social sciences – often to nuance accounts of how different agencies may or may not be separable from one another. ‘Entanglement’ has been used, for example, to characterise the affective relations and discontinuities between human bodies and other entities;22 to make sense of settler identities in colonial and postcolonial contexts;23 and to open

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up the relationships, similarities and intersections between human and non-human things.24 But it is especially in science and technology studies (STS), and most particularly in feminist STS, that ‘entanglement’ has been put to work in the last decade or so. STS scholars have invoked the term to help parse, for example, human culture in an age of ecological crisis;25 to think the space between language and databases in science fiction26; to open up the relationship between persons and species in North Atlantic societies;27 and to make visible the rationalities and continuities between scholarly registers of science, ethics and justice.28 Much of this prominence can be traced to the potent work of Karen Barad, and especially to the carefully wrought metaphysics that Barad names as ‘agential realism’.29 Among the many things at stake in this coinage, for Barad, is firstly a shift from thinking relationality as process of interaction (in which more or less bounded things engage with one another) to one of ‘intra-action’ – a neologism that refuses prior wholeness as the condition of intersection. Barad’s ‘agential realism’ takes the existence of discrete agencies very seriously, but it takes these forms as secondary to the intersection of those agencies – and indeed it is precisely the ‘dividual’ nature of agencies (to borrow a term from anthropologist Marilyn Strathern)30 that Barad holds to be the ‘primary ontological units’ of the world.31 Secondly, what this means for Barad is that we cannot easily divide the practices (or objects) of ‘science’ and ‘medicine’ from the practices (or objects) of social and humanistic inquiry that are interested in understanding (and maybe contributing to) scientific medical domains. We do not, as scholars from various disciplines, bring our objects and practices to another through a kind of free-trade agreement; rather we re-enter a long history of binding, tangling and cutting, within which current moves towards integration are much more weighted than they might at first seem.32 What holds together much of the research employing ‘entanglement’ is an intuition that some set of things, commonly held to be separate from one another (indeed, that define themselves precisely with reference to their separability) – science and justice, humans and non-humans, settlers and natives – not only might have something in common, but also, in fact, may be quite inseparable from one another. ‘What often appear as separate entities (and separate sets of concerns) with sharp edges’, remarks Barad, ‘does not actually entail a relation of absolute exteriority at all.’33 In this chapter, we contend that working with a dynamics of entanglement – rather than a telos of integration – sets in motion a more experimental and capacious future for the medical humanities.34 Elsewhere, we have set out our own programmatic vision for a broader sense of ‘experimental entanglements’ across the humanities, the social sciences and the life sciences.35 There, we attempt to mobilise a different set of epistemological commitments vis-à-vis how the self-proclaimed humanist or interpretive social scientist might approach matters commonly considered the province of the life sciences. We have also tried to conjure a different palette of affective dispositions through which we might both characterise and live in interdisciplinary spaces. Those dispositions (eddying around ambivalence, awkwardness, frustration, failure, and so on) depart from the most common affective registers (critique, adulation, disinterested rigour) through which humanists have tended to approach the terrain of the medical, clinical

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or biomedical.36 We want resolutely to claim the stance of interestedness. But we also see interest as a stance that can be (indeed, usually is) taken up without someone quite knowing the place at which they stand, or the entwinements through which they are always-already bound with/in other interested agencies. So it is to be entangled. In short, we are committed to arguing, in current and future work, that a turn to entanglement – as epistemology, ontology and phenomenological-affective disposition – might herald a more interesting future for scholars learning to live ‘between’ disciplines; in this chapter, specifically, we want to suggest that such a stance might allow for a more critical engagement with the sets of material, bodily, affective, linguistic and disciplinary configurations within which both the medical humanities, and those phenomena that they draw within their purview, are endlessly bound. To do so, we fix attention on what Barad intends by entanglement, and here we draw on one of the lesser-known iterations of her argument: the essay ‘Living in a Posthumanist Material World’,37 in which Barad turns to think about one of the most central objects of the medical humanities – that is, life. Barad begins her account with perhaps the best-known intersection of quantum dynamics and life: the paradox of Schrödinger’s cat. In this thought experiment, Schrödinger asks us to consider a cat in a box that also contains a nuclear atom with a fifty per cent chance of decaying in one hour, as well as a flask of hydrocyanic acid. If the atom does decay, a series of reactions will break the flask of acid, thus killing the cat. After one hour, then, the cat might be alive, and it might be dead; in any event, all we can do to express the state of the cat, at that moment, is generate an equation that superposes the two states – that smears the dead cat across the living. Barad reminds us that the issue here is not, as it is often taken to be, that the cat is therefore either alive or dead (and that therefore we just do not know yet); nor is it that the cat is neither alive nor dead; similarly, the issue is neither that the cat is both alive and dead, nor that it is a little bit alive, and also a little bit dead (the latter likely describes the metaphysical condition of many cats, just not this one).38 The issue is that the equation describes a state in which: the cat and the atom do not have separately determinate states of existence . . . indeed [what the story demonstrates is that] there is no determinately bounded and propertied entity that we normally identify with the word ‘cat’ independently of some measurement that resolves the indeterminacy and specifies the appropriate referents for the concepts of ‘cat’ and ‘life state’.39 The cat, in this circumstance, ‘simply has no determinate life state . . . there is no determinate fact of the matter about whether it is dead or alive’.40 The point, for Barad, is that ‘things do not have inherently determinate boundaries and properties . . . words do not have inherently determinate meanings.’41 The key point for us, similarly, is that determinacy – ‘wholeness’, we might say in another context – is only a function of specific material arrangements; things, people, concepts, ideas and so on, are cut clear of their interdependencies only as a function of those interdependencies themselves. Being intersected is a condition of agency; intersecting is neither a function, nor a use, of those agencies’ prior completeness.

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For Barad, as for Schrödinger, what is precisely at stake here is how to account for life. Confronted with the smeared cat, the fact is, says Barad, ‘life just ain’t what it used to be, if it ever was.’42 Life-conditions are definable only through specific ‘measurement intra-actions’.43 In this sense, the referent of measurement for Barad is not a bounded ‘object’ – ‘life’, the patient, an unfeeling doctor, a consoling poem – but what Barad calls phenomena: what we are always in pursuit of, when we measure, are ‘entangled and enfolded sets of apparatuses of bodily production of all the beings and devices relevant to this specific example’.44 Our methodological task is thus one of ‘accountability to and for differences that matter’.45 And our investigations, as well as the devices and apparatus that make them possible, are ‘not mere static arrangements in the world’ – rather, they are themselves ‘materialdiscursive configurations of the world . . . through which specific boundaries are enacted’.46 Boundaries, whether between different ways of measuring things or between the act of measuring and the thing measured, do not mark differences to be overcome in the act of integration. Boundaries are instead things we produce – that we have to produce – through specific intra-active configurations and performances. Practices of making boundaries are fully implicated in the dynamics of intra-activity through which phenomena come to matter: ‘discursive practices and material phenomena do not stand in a relationship of externality to one another,’ Barad remarks: ‘rather, the material and the discursive are mutually implicated in the dynamics of intra-activity.’47

Differences That Matter This is, we are aware, perhaps an obscure account of how one might disrupt the ‘inter-’ and/or ‘multi-’disciplinary nature of the medical humanities. Our theoreticalrhetorical arguments are intended to open a space for future, empirically fine-grained analyses of practices of boundary-making in the medical humanities terrain. What we want to insist on here is that when we talk about ‘entangling the medical humanities’, we are not simply introducing a new metaphor, or asking our colleagues to rearrange the disciplinary deckchairs. Instead, we are drawing attention to the fact that the preoccupations of the medical humanities are always going to be particular kinds of, or moments in, sets of as yet undetermined material-semiotic configurations and alignments (bodily, pathological, cultural, human, and so on) – whether this is acknowledged institutionally or not. This implies that we need to see the current favoured topoi of medical humanities scholarship, and the differentiations that those topoi bring into being – a quickly assembled list would surely include the suffering patient, a doctor’s practice of clinical care, the exemplary site of the clinic, and cancer – as congealed, and overly resonant configurations that constitute but one particular way of making phenomena come to matter. But what if the task of the medical humanities were to encourage the emergence of different topoi, or the limning of different topologies through which illness and care are constituted? What if illness were not imagined, for example, as co-located with or coincidental to a body? 48

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Within such an imaginary, one could argue that the most pressing sites of the biopolitical redistribution of bodily potencies (with all that they connote in relation to questions of medicine and health) might not include the bioethically over-invested scene of the prone figure hooked up to a life support machine; one might then explore, instead, assemblages of welfare policies, psychometric tests, affective dispositions and algorithmic predictions that are in the process of redistributing categories and manifestations of productive labour and idleness under practices of ‘workfare’.49 Or, to take another example, one might approach a healthcare ‘institution’ not as a conceptual and physical edifice whose histories we have become used to tracing (the National Health Service, the World Health Organisation, the hospital), but as something that gives form or order precisely by ‘cutting’ or ‘disentangling’ entities from a heterogeneous field. Tiago Moreira, for example, has examined how the emergence of the systematic review in healthcare is an entity brought into the world by ‘disentangl[ing] data from the milieus in which they are commonly found’, and endowing these data with new qualities that are enabled by their collection and dissemination through new techno-political means.50 We might go on. But the point here is not to introduce a new range of topics that will ‘count’ as ‘medical humanities’. The point is, rather, to break open the two halves of that term, such that the complex of human life and medical science becomes – to borrow from an analysis of interspecies health – a series of: repeated crossings, an ongoing conversation – a repetitive material semiotics, or a working out of a new reality. Contagion, then, is more than contact and viruses don’t simply diffuse across space, or extend across a plane through simple transmission. They are configured in relation.51 An integrated medical humanities, by contrast, is always going to presuppose boundaries that obscure these differences – and, indeed, render them invisible. Thus the issue is not that illness and healing are multi-faceted phenomena that cannot be understood from a clinical perspective only, and that require a new, interdisciplinary perspective to be appreciated in their wholeness. The issue is that what get enacted, positioned and understood as moments of suffering, sickness, care, and so on are always in the process of being cut from particular sets of relations.52 What we need methodologically, then, is a way of thinking, writing and measuring life-states that ‘stays with the trouble’53 of these relations and differences. The medical humanities does not need to break down boundaries, but rather to understand how practices of making, breaking and shifting boundaries constitute illness and healing. Accordingly, we call for closer attention to the political as well as to the ontological consequences of installing boundaries that constitute some scenes, rather than others. By the same token, the medical humanities does not need to integrate different perspectives into a unified whole in order to appreciate an entity in its complexity; it needs to understand how perspectives themselves are already – and this is no shame – moments of relation, both with one another, and with what they take to be their objects. The point is that integration is layered on configurations of relations;

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it is not generative of them. An entangled medical humanities does not ask for differences to be overcome; it asks how differences have come to matter in sickness and health; it tries to think how their mattering might be brought into richer understanding through specific moments of intervention.

The Figure of the Human If the task is to think how practices of making, breaking and shifting boundaries constitute moments of illness and healing, then we need to displace, if not significantly reimagine, how medical humanities has tended to figure the ‘human’ – an entity whose boundaries have commonly been understood to end at her skin. In the same move, we need to displace a model in which empathic or caring humanism is positioned as ready to tame the clinical coldness of the biomedical – or in which the inventiveness of the ‘human spirit’ is imagined as ready to combat the deadening and reductive effects of scientific rationalism.54 Such a cathexis is at odds with much of the terrain beyond the medical humanities, which has long placed the categories that we fantasise as more or less solid – the ‘natural’, the ‘cultural’, the ‘social’, the ‘human’ – under pressure. The suturing together of ‘nature’ and ‘culture’ in the composite term ‘natureculture’55 points, at least in part, to the need to grapple with the biosocial complexity of life-states. Such complexity has been explicitly or implicitly avoided by many humanistic and interpretative social-scientific scholars – not least in the medical humanities – who have frequently wielded the adjectives ‘biological’ or ‘biomedical’ as indicators of distaste or condemnation.56 Concomitant with the rise of terms such as ‘natureculture’, a growing number of researchers have been challenging the singularity of the human (along with all her commonly privileged qualities of creativity, intentionality, wilfulness and agency) by tracing the inventiveness and motility of the non-human.57 Indeed, such inventiveness is increasingly understood to be found beyond ‘living’ entities – ‘human’ and ‘non-human’ – and to encompass, for example, the energetics of the geologic.58 If we remain ambivalent about the neo-vitalist optimism that can spring forth, untethered, in some of this work, we are also struck by its dark undertow.59 And if such preoccupations seem to be at some distance from the usual concerns of the medical humanities, we none the less invoke them to displace the common calculus within medical humanities whereby the ‘biomedical’ registers as the cold and deadening engine of facts, and the ‘humanities’ as the non-reductive and lifeaffirming context-expert. Of course, for many, the biomedical retains both an historiographical and a territorial resonance – and tracing the contours of this domain (not least in postcolonial contexts60) remains both a potent and a lively scholarly activity. Our wish is not to displace the category of the biomedical as such but – and, indeed, in league with historical and postcolonial scholarship – to open up to its liveliness, its idiosyncrasy, its sense of internal contest and its strangeness. We are in search of a different set of dynamics for the medical humanities – one in which both the generative and the inert are properties of an entangled field of bio/social/cultural life: one

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that would not establish at its heart those wearyingly familiar encomia – an ‘ethical life’ and a ‘good death’. In previous work,61 we have explored such dynamics in the space of the cognitive neuroscientific experiment, a space whose uncanny generativity has not been fully recognised by its many, often critical, humanist onlookers. We used our own encounters with the experiment to redirect the rhythms of stale humanities-versussciences debates, and the familiar stagings of the subjective/objective and the human/ non-human that coagulate around them. We are interested in setting into motion rich archives of experimentation within the arts, humanities and interpretive social sciences by braiding them through the framework of laboratory science – not to ‘reduce’ the former, but to reshape and reimagine the conceptual and empirical contours of the latter.62 In particular, we want to insert (at least) two humans – the experimenter and her ‘subject’ – into a complex experimental apparatus comprising other instruments and entities, and thereby to remain agnostic about the role that each part within this assemblage might play. We refuse to take for granted who or what probes whom or what in an experiment; when the human subject becomes an object and when she might remain a speaking subject; which other entities might ‘speak’ within the experimental set-up; and what the possibilities of influence and suggestion might hold for torqueing paradigms and resulting data within the cognitive neuroscientific experiment. Let us, in closing, propose an equivalent manœuvre for the critical medical humanities. What difference would it make for us to remain agnostic about what does and does not count as a medical intervention or apparatus? What would happen if we remained open about where (or what, or who) the thinking, feeling subject is within medical mise-en-scènes? What if disease were not a bodily fact that needed finer interpretation, but a way of describing a relation between a body, a history and an environment? What if, across such interpretive labours, we could think more radically about the role that everyone (practitioners, writers, experimenters and patients of different stripes) might play? What possibilities might open up for the medical humanities, for example, if we discerned a world of awkward, lachrymose, over-involved clinicians, on the one hand, and cold, pragmatic, resolutely scalpellic poets on the other? Indeed, it is precisely in the opening up of such questions that we see the promise of the critical medical humanities.

Conclusion We have tried to sketch here, in abbreviated and gestural form, an outline for what we call an entangled medical humanities. By invoking entanglement, we wish to turn the attention of medical humanities practitioners and theorists from the problematic of ‘integration’ to one of ‘differences’ – in other words, from a need to come together, to a recognition that both medicine and life itself are constituted precisely through relations, and through practices of bordering, cutting and exchange through which those relations come to matter. There is thus neither an additive nor an integrative ‘human’

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at the heart of the medical humanities; there are, rather, animacies,63 vitalities and pathologies, which flow across different practices and preoccupations that then come to be ascribed to the ‘humanities’ and the ‘biosciences’. If our chapter has offered a largely theoretical account of those flows and forces, at its heart is, none the less, a significantly reanimated research programme for the medical humanities. Entanglement eschews what we see as the frequently defensive apparatus of the field – one that has tended, despite its investment in plurality, to prescribe compelling sites of animation and analysis. An entangled medical humanities claims, in contrast, no privileged access to ‘narratives’ of illness and healing, to the ‘experience’ of illness, to ‘reflections’ on doctoring, to insights on ‘care’, to normative or ‘ethical’ analysis and so on. But it also rejects any claim from a conservatively defined, narrowly bioscientific laboratory science to have unique access to the body and its ailments, to be the only interpreter and preserver of the vital capacities of that body, or to be uniquely intimate with its corporeal malfunctions. What would happen, for and to the medical humanities, if we set aside our usual allegiances and identifications to think more experimentally about the constitution and dynamics of the medicalhumanistic domain? Tracing such trajectories of entanglement is what we have tried to begin in this chapter.

Acknowledgements This research is supported by the Wellcome Trust 103817/Z/14/Z.

Further Reading Karen Barad, Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning (Durham, NC: Duke University Press, 2007). Karen Barad, ‘Living in a Posthumanist Material World: Lessons from Schrödinger’s Cat’, in Anneke Smelik and Nina Lykke (eds), Bits of Life: Feminism at the Intersections of Media, Bioscience, and Technology (Seattle: University of Washington Press, 2008), pp. 165–76. Lisa Blackman, ‘Affect and Automaticy: Towards an Analytics of Experimentation’, Subjectivity 7 (2014), 362–84. Des Fitzgerald and Felicity Callard, ‘Social Science and Neuroscience beyond Interdisciplinarity: Experimental Entanglements’, Theory, Culture & Society 32.1 (2015), 3–32. Des Fitzgerald, Svenja Matusall, Joshua Skewes and Andreas Roepstorff, ‘What’s so Critical About Critical Neuroscience? Rethinking Experiment, Enacting Critique’, Frontiers in Human Neuroscience 8 (2014), p. 365. Monica Greco, ‘Logics of Interdisciplinarity: The Case of Medical Humanities’, in Georgina Born and Andrew Barry (eds), Interdisciplinarity: Reconfigurations of the Social and Natural Sciences (London and New York: Routledge, 2013), pp. 226–46. Donna J. Haraway, Modest_Witness@Second_Millennium.FemaleMan_Meets_OncoMouse: Feminism and Technoscience (London: Routledge, 1997).

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Andreas Roepstorff and Chris Frith, ‘Neuroanthropology or Simply Anthropology? Going Experimental as Method, as Object of Study, and as Research Aesthetic’, Anthropological Theory 12.1 (2012), 101–11. Nikolas Rose, ‘The Human Sciences in a Biological Age’, Theory, Culture and Society 30.1 (2014), pp. 3–34.

Notes 1. See, for example, the Wellcome Trust’s recent embrace of ‘medical humanities’ as one of its major funding streams (accessed 31 May 2015). See also the journals Medical Humanities (BMJ) and Journal of Medical Humanities (Springer). For an interesting account of medical humanities as an interdisciplinary field, see Monica Greco, ‘Logics of Interdisciplinarity: The Case of Medical Humanities’, in Georgina Born and Andrew Barry (eds), Interdisciplinarity: Reconfigurations of the Social and Natural Sciences (London and New York: Routledge, 2013), pp. 226–46. 2. See Anne Whitehead and Angela Woods, ‘Introduction’, in this volume, pp. 2–3. 3. Ibid. 4. Our use of the adjective ‘thick’ draws inspiration from Clifford Geertz’s famous formulations on ‘thick description’– which draw, in turn, on Gilbert Ryle’s work. Geertz argues that the ethnographer is faced with ‘a multiplicity of complex conceptual structures, many of them superimposed upon or knotted into one another, which are at once strange, irregular, and inexplicit, and which he must contribute somehow first to grasp and then to render’ (Clifford Geertz, ‘Thick Description: Towards an Interpretive Theory of Cultures’, in The Interpretation of Cultures (New York: Basic Books, 1973), p.10). Our essay is, likewise, preoccupied with the difficulty of both grasping and rendering a knotted conceptual and empirical field. 5. Two calls for a ‘critical medical humanities’ comprise: Sarah Atkinson, Bethan Evans, Angela Woods and Robin Kearns, ‘ “The Medical” and “Health” in a Critical Medical Humanities’, Medical Humanities 36.1 (2015), 71–81; and William Viney, Felicity Callard and Angela Woods, ‘Critical Medical Humanities: Embracing Entanglement, Taking Risks’, Medical Humanities 41 (2015), pp. 2–7. 6. Other interventions include: Des Fitzgerald and Felicity Callard, ‘Social Science and Neuroscience beyond Interdisciplinarity: Experimental Entanglements’, Theory, Culture and Society 32.1 (2015), pp. 3–32; Des Fitzgerald and Felicity Callard, ‘Entangled in the Collaborative Turn: Observations from the Field’, Somatosphere 3 (November 2014) ; Felicity Callard and Des Fitzgerald, Rethinking Interdisciplinarity across the Social Sciences and Neurosciences (London: Palgrave, 2015). 7. H. Martyn Evans and Jane Macnaughton, ‘Should Medical Humanities Be a Multidisciplinary or an Interdisciplinary Study?’ Medical Humanities 30.1 (2004), pp. 1–4. 8. Ibid., p. 3. 9. Ibid., p. 3; our emphasis. 10. Ibid., p. 3. 11. Ibid., p. 3. 12. Martyn Evans and David Greaves, ‘Exploring the Medical Humanities’, British Medical Journal, 319.7219 (1999), p. 1216; cf. Luca Chiapperino and Giovanni Boniolo, ‘Rethinking Medical Humanities’, Journal of Medical Humanities 35.4 (2014), pp. 377–87.

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13. Evans and Greaves, ‘Exploring the Medical Humanities’, p. 1216. 14. Robert Arnott, Gillie Bolton, Martyn Evans, Ilora Finlay, Jane Macnaughton, Richard Meakin and William Reid, ‘Proposal for an Academic Association for Medical Humanities’, Medical Humanities 27.2 (2001), p. 105; our emphasis. 15. Jill Gordon, ‘Medical Humanities: To Cure Sometimes, to Relieve Often, to Comfort Always’, Medical Journal of Australia 182.1 (2005), pp. 5–8. 16. Johanna Shapiro, Jack Coulehan, Delese Wear and Martha Montello, ‘Medical Humanities and Their Discontents: Definitions, Critiques, and Implications’, Academic Medicine 84.2 (2009), pp. 192–8. 17. Eric Kandel, for example, in presaging the arrival of the interdisciplinary field of neuropsychoanalysis, noted that ‘One would hope that the excitement and success of current biology would rekindle the investigative curiosities of the psychoanalytic community and that a unified discipline of neurobiology, cognitive psychology, and psychoanalysis would forge a new and deeper understanding of mind’ (Eric R. Kandel, ‘Biology and the Future of Psychoanalysis: A New Intellectual Framework for Psychiatry Revisited’, American Journal of Psychiatry 156.4 (1999), pp. 505–24). 18. Brian Hurwitz and Paul Dakin, ‘Welcome Developments in UK Medical Humanities’, Journal of the Royal Society of Medicine 1023 (2009), p. 84. 19. Ibid., p. 85. 20. Gillie Bolton, ‘Boundaries of Humanities: Writing Medical Humanities’, Arts and Humanities in Higher Education 7.2 (2008), p. 132; for a critique, see Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, Medical Humanities 27 (2011), pp. 73–8. 21. For a useful account, see Vlatko Vedral, ‘Quantum Physics: Entanglement Hits the Big Time’, Nature [News and Views] 425 (2003), pp. 28–9. 22. Sean Watson, ‘Bodily Entanglement: Bergson and Thresholds in the Sociology of Affect’, Culture and Organization 9.1 (2003), pp. 27–41. 23. Avril Bell, ‘Bifurcation or Entanglement? Settler Identity and Biculturalism in Aotearoa New Zealand’, Continuum 20.2 (2006), pp. 253–68. 24. Ian Hodder, ‘Human–Thing Entanglement: Towards an Integrated Archaeological Perspective’, Journal of the Royal Anthropological Institute 17.1 (2011), pp. 154–77. 25. Katrina Dodson, ‘Introduction: Eco/Critical Entanglements’, Qui Parle: Critical Humanities and Social Sciences 19.2 (2011), pp. 5–21. 26. N. Katherine Hayles, ‘Material Entanglements: Steven Hall’s The Raw Shark Texts as Slipstream Novel’, Science Fiction Studies 38.1 (2011), pp. 115–33. 27. Michael Carrithers, Louise J. Bracken and Steven Emery, ‘Can a Species Be a Person?: A Trope and its Entanglements in the Anthropocene Era’, Current Anthropology 52.5 (2011), pp. 661–85. 28. Laura Mamo and Jennifer R. Fishman, ‘Why Justice? Introduction to the Special Issue on Entanglements of Science, Ethics, and Justice’, Science, Technology & Human Values 38.2 (2013), pp. 159–75. 29. Karen Barad, Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning (Durham, NC: Duke University Press, 2007); Karen Barad, ‘Posthumanist Performativity: Toward an Understanding of How Matter Comes to Matter’, in Stacy Alaimo and Susan Hekman (eds), Material Feminisms (Bloomington: Indiana University Press, 2008). 30. Marilyn Strathern, ‘The Self in Self Decoration’, Oceania 49.3 (1979), pp. 241–57. 31. Barad, ‘Posthumanist Performativity’, pp. 139–41.

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32. Barad, Meeting the Universe Halfway, p. 247. 33. Ibid., p. 93. 34. See also Annamaria Carusi, ‘Modelling Systems Biomedicine: Intertwinement and the “Real” ’, in this volume, pp. 59–60, who, in another mode of pressing for non-dualism, argues that our central critical challenge: is not to deconstruct ideas about faithfulness and accuracy of representation. Rather, we need to understand how the enterprise of rendering the world, knowing, and acting in it, in its intertwinement of bodies, technologies, expressivities, forms ourselves and our world, and what may be the forms of responsibility that flow from that. 35. Fitzgerald and Callard, ‘Experimental Entanglements’. 36. Ibid. for lengthy discussions of these interventions. 37. Karen Barad, ‘Living in a Posthumanist Material World: Lessons from Schrödinger’s Cat’, in Anneke Smelik and Nina Lykke (eds), Bits of Life: Feminism at the Intersections of Media, Bioscience, and Technology (Seattle: University of Washington Press, 2008), pp. 165–76. 38. Ibid., pp. 169–70. 39. Ibid., pp. 169–70. 40. Ibid., p. 170. 41. Ibid., p. 170. 42. Ibid., p. 171. 43. Ibid., p. 171. 44. Ibid., p. 171. 45. Ibid., p. 173. 46. Ibid., p. 173. 47. Ibid., pp. 173–4. 48. One powerful articulation of this can be found in Veena Das, Affliction: Health, Disease, Poverty (New York: Fordham University Press, 2015). 49. Lynne Friedli and Robert Stearn, ‘Positive Affect as Coercive Strategy: Conditionality, Activation and the Role of Psychology in UK Government Workfare Programmes’, Medical Humanities, 41 (2015), pp. 40–7. 50. Tiago Moreira, ‘Entangled Evidence: Knowledge Making in Systematic Reviews in Healthcare’, Sociology of Health and Illness 29.2 (2007), pp. 180–97. 51. Steve Hinchliffe, ‘More than One World, More than One Health: Re-Configuring Interspecies Health’, Social Science & Medicine 129 (2015), pp. 28–35. 52. See also Annemarie Mol, The Body Multiple: Ontology in Medical Practice (Durham, NC: Duke University Press, 2002). 53. Donna Haraway, ‘Staying with the Trouble: Xenoecologies of Home for Companions in the Contested Zones’, in Fieldsights – From the Editorial Office, Cultural Anthropology Online (accessed 15 July 2015). 54. For an exemplary instance of this juxtaposition of the empathic and the reductive, see Philip Thomas and Eleanor Longden, ‘Madness, Childhood Adversity and Narrative Psychiatry: Caring and the Moral Imagination’, Medical Humanities 39.2 (2013), pp. 119–25. 55. See Donna J. Haraway, Modest_Witness@Second_Millennium.FemaleMan_Meets_OncoMouse: Feminism and Technoscience (London: Routledge, 1997). See also Stuart Murray, Autism (New York: Routledge, 2011).

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56. See, for example, Alan Bleakley’s claim about ‘critical medical humanities’: ‘taking a more critical approach allows us to see meaning in illness and provides a point of resistance to reductive biomedical science’ (Alan Bleakley, ‘Towards a Critical Medical Humanities’, in Victoria Bates, Alan Bleakley and Sam Goodman (eds), Medicine, Health and the Arts: Approaches to the Medical Humanities (Abingdon: Routledge, 2014), p. 24). 57. Rosi Braidotti, The Posthuman (Cambridge: Polity Press, 2013); Jane Bennett, Vibrant Matter: A Political Ecology of Things (Durham, NC: Duke University Press, 2010). 58. Kathryn Yusoff, ‘Antarctic Exposure: Archives of the Feeling Body’, Cultural Geographies 14.2 (2007), 211–33; Myra J. Hird and Celia Roberts, ‘Feminism Theorises the Nonhuman’, Feminist Theory 12.2 (2011), pp. 109–17. 59. For example, Kathryn Yusoff, ‘Biopolitical Economies and the Political Aesthetics of Climate Change’, Theory, Culture & Society 27.2–3 (2010), pp. 73–99. 60. See Warwick Anderson, ‘Making Global Health History: The Postcolonial Worldliness of Biomedicine’, Social History of Medicine 27.2 (2014), pp. 372–84. 61. Fitzgerald and Callard, ‘Experimental Entanglements’. 62. See also Lisa Blackman, ‘Affect and Automaticy: Towards an Analytics of Experimentation’, Subjectivity 7 (2014), pp. 362–84. 63. Mel Y. Chen, Animacies: Biopolitics, Racial Mattering and Queer Affect (Durham, NC: Duke University Press, 2012).

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2 MODELLING SYSTEMS BIOMEDICINE: INTERTWINEMENT AND THE ‘REAL’ Annamaria Carusi

Introduction t a conference on developing the capacity of systems biology to transform itself in systems biomedicine, several of the scientists’ presentations showcase the computational modelling methods they are developing. Drawing towards the end of his presentation, an experienced pharmacologist admonishes the audience to bear in mind that, despite the progress in modelling techniques that he has been discussing, a model is always just a representation and never reality. At this point, there is a PowerPoint slide showing Magritte’s painting, This is not a Pipe, and chuckling from the audience. It will not have been the first time that they have seen it, as the painting is by now a trope running through these events, rivalled only by the quotation from George Box: ‘Essentially all models are wrong, but some are useful.’ Indeed, I have taken up this trope myself, but find that I need to judge my audience carefully when choosing what to move on with. Fairly unproblematic is the choice to follow up with Jorge Luis Borges’s story about the unconscionable maps, ‘On Exactitude in Science’, but more problematic is to follow up with Picasso’s portrait of Gertrude Stein, together with the quotation attributed to Picasso: ‘Everybody says that she does not look like it but that does not make any difference, she will.’ The trope of Magritte’s pipe/non-pipe foregrounds issues of representation for scientists, serving to make obvious the gap between models and reality. This analogy between art and science is based on a deficit model of concepts like ‘fiction’, ‘metaphor’ and ‘narrative’, which focus on what these modes of expression are not: not true, not real, not literal. In this chapter, I propose that one of the roles for the critical medical humanities scholar in this domain is instead to shift the conversation towards different analogies that are based on a generative and productive model of art: the world-making and world-collaborating modes of art. The chapter starts by outlining the kind of modelling characteristic of systems biomedicine, an intricate hybrid of wetlab experiments, mathematical modelling and computational simulations. This hybridity brings with it a number of epistemic as well as social challenges, which are particularly evident in the visual displays that mediate observational and evidentiary styles and communications between the disciplines, and in the different attitudes around the matter of models and their targets. In the second

A

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section, I focus on the realism of models as a central focus of scientists’ interest and disagreement, and discuss continuities between science and art forms with respect to realism and other ways of being ‘world-directed’. Juxtaposing critiques of realism in the humanities and in science studies, I track a movement from anti-realism to nondualist reconfigurations of the entire framework for thinking about the relationship between models and world. In the third section, I consider how these non-dualist frameworks open up different ways of thinking about systems biomedicine and the implications for ourselves as ‘digital patients’. I conclude with a brief note about the responsibilities that this implies for the critical medical humanities scholar.

Systems Biomedicine and its Models It is well known that models are pervasive in biomedical scientific practice; a wide range of organisms, animals and material artefacts are used to instantiate biological entities and processes or to stand proxy for broader or different classes. Models are a huge part of the mundane reality of biomedical scientists, who devote a large proportion of their research time and their energy to developing, constructing, using and refining specific types. Computational models are relative newcomers in this already jostling mix of models in biomedical research. Having arrived on the scene in the last few decades,1 these models elicit a wide range of responses, from suspicion to optimistic confidence that they will be a major force in shaping biomedical research and its carry-through, or ‘translation’, to medical applications. Computational modelling is very broad, and could potentially be used in almost any strand of research. Systems biology as a new field and approach to biomedicine is entirely predicated upon the possibilities of modelling complex biological processes that advanced computational technologies and resources allow. In this sense, it is typical of technoscience, where science and technologies cannot be peeled off each other, the whole embedded in a complex network of social and institutional relations. The specific technologies that have made systems biology possible are, on the one hand, the sheer computational power for constructing and managing large databases, and for running simulations that once took days, if not weeks, in a few hours; and on the other, the devices and means for gathering data, the developments of algorithms for processing data, and the development of techniques for constructing simulations and visualisations. There are many different forms of computational model and modelling approaches.2 One can make a rough distinction between (1) data-intensive modelling approaches that harness new technologies for generating, storing and integrating data, together with algorithms to discover patterns and interactions among data; and (2) computational science approaches that are based upon mathematical models and computational simulations of dynamical biological processes. In fact, these approaches are often closely associated. From the perspective of their construction, computational models are hybrids.3 Ideally, in biomedical sciences, there is a very close connection between experiments (using cells, tissues, organs, non-human animals or humans), mathematical modelling and

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computational simulation. This is especially important the closer the research comes to medical applications, such as for diagnosis, drug safety testing or treatment. The hybridity of the models is both methodological and ontological. It is methodologically hybrid for two reasons. Firstly, there are clearly a number of methodologies involved in constructing the computational models: experimental, mathematical, computational. Secondly, during the modelling process, there is not a clear dividing line between experiment, equation and simulation, in the sense that they are all geared towards each other. Experimental techniques are used, but the nature of the experiment changes as it becomes geared towards producing data for models and for testing the output of the simulation. Mathematical modelling is not validated purely in the mathematical terms of deduction and proof but needs to be geared both towards experiments and towards the numerical techniques of simulation; the outputs of simulations are interpreted against the background of the interconnection between experiments, equations and the simulation techniques employed. Therefore, not only methodologically but ontologically too, what is called a ‘computational model’ is a hybrid system of interconnected experiments, equations and simulations. An illustration of this sort of hybrid system can be seen in Figure 2.1. Constructed computational models cannot simply be compared with a target domain in order to see whether they successfully represent that target, since there are not necessarily sufficient grounds of comparability between them. Especially when computational models are being brought into medical and clinical contexts, they meet up with a wide variety of different types of data and accompanying instruments, techniques and typical research questions. Appropriate comparability is not given in advance, but needs to be worked at and produced through ongoing iterations of modelling

Figure 2.1 A hybrid system of modelling. Author’s own figure.

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and testing. In this process, the model as entity, even as a hybrid entity, falls into the background, and it is just as well to talk about modelling as activity and process. Each of the elements in the model system is a temporary moment in the process, materialised through apparatus (wetlab apparatus and instruments, the computers and computational infrastructure for the running of simulations), symbolic systems (language, mathematical and numerical symbols, graphs and diagrams) and different modes of observation, such as the output of tracking devices, microscopy and the visualisations generated by simulations.4 The entire process is mediated through visual outputs, which are both materialisations of the ongoing modelling process and social junctures for the process.5 The visual displays of outputs have the dual role of making accessible the observations afforded by the different techniques, and of communicating these to others.6 Visual displays are occasions for researchers to gather together for data interpretations and discussions of the modelling process; they facilitate the integration and interplay of the different aspects of the process; and they mediate social interactions of the different disciplines involved. Considering how closely related visual displays are to the observational and evidentiary styles of different epistemic cultures,7 their role goes far beyond being mere vehicles for communication. For example, the visualisations of computational simulations are often alien to microscopists, and the microscopical observations can be meaningless to computational scientists. Through the visual displays, there can be an alignment of methodologies: we see this when simulators and experimentalists start to adopt the same way of rendering their visual displays. Alternatively, the visual displays make the faultlines between disciplines stand out even more.8 Thus the visual displays are active mediators throughout the negotiations and rapprochements or distances between communities. As already noted, computational modelling is still fairly new in these domains; it has yet to prove itself, and often even has yet to show itself worthy of the time, energy and resources that are required to test it. It needs an intricate set of interdisciplinary relations between experimentalists, mathematicians and computer scientists to get off the ground, which will (if successful) ultimately produce a different transdisciplinary space where both the entities researched and the researchers are not quite the same as at the outset. Forging the collaboration network is not easy. Adopting a methodology as different as computational modelling implies a very deep shift for researchers. For example, a biological process observed through microscopy is a very different entity to a biological process (even ostensibly the same one) computationally modelled. It positions the researcher in a very different way with respect to the research process, involving a different research identity. A question might even arise as to whether what is seen is still a biological process, and whether one is still involved as a witness to a currently occurring biological process, as one is in a wetlab experiment.9 What is seen, observed and explored and who sees, observes and explores are defined in terms of each other. There are ontological stakes for researchers too, and this is manifested in a recurring concern in encounters around computational modelling between different disciplines. This is a concern with what is real or realistic. For experimentalists, in the laboratory or in the clinic, computational models often evoke responses that put into

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doubt the reality of what they seem to show, and there are often disagreements or tensions over what counts as realistic.10 Loosened from the material experimental setting of in vivo or in vitro models and all the apparatus around them, computationally generated visualisations are not perceived (literally) as showing something that is a ‘real’ process. Mathematicians instead hold a quantitative representation of a biological process to be more realistic than a qualitative one, because it represents mechanisms – that is, mechanisms quantitatively rendered rather than observed. Models are most often described as representations or descriptions in the everyday language and the publications of biomedical modelling, even though the meaning of ‘representation’ is rarely made explicit. Thus, in the discourse of scientific modelling, the terms ‘realistic’ and ‘representation’ are frequently and unself-consciously used, and demands made on each other in the interdisciplinary negotiations and dialogues (and breakdowns) are frequently couched in these terms. To doubt whether something is a representation is at the same time, in this discourse, to doubt whether it is a model at all. Even though computational modelling is heralded by some to be a new paradigm of modelling (and hence science), there are also sceptical questions raised about whether they are still models in the same way as the accepted forms of models of biomedical research: organisms, non-human animals and humans, and material models. Whether or not they are accepted as models betrays deeply held expectations about the processes and criteria whereby something becomes a model in the different scientific communities implicated in the demand, by computational modelling, to be recognised as such. What is behind this scepticism has in part already been discussed; beyond the visual differences between the different displays, there is also the matter of matter. That is, the observations afforded by these different displays are in different material modalities and of very different material entities. Experimentalists understand themselves to be observing the process they are investigating in a particular model organism. This is an indirect and often highly stylised and constructed process, but yet they take themselves to be in ‘causal contact’ with the process, through their visual displays: looking through a microscope, or looking at images of different kinds, or graphs produced through some form of automated tracing. Ultimately, even if only through long and intricate chains, these visual displays bear the traces of familiar equipment and lead back to something organic, something actually biological: that is, the wet stuff of a wetlab. Often the wonder of being a biologist is that these organic things can be coaxed into visibility at all.11 In a computational visualisation, however, what is seen is something that is not itself organic or ‘wet’; moreover, its relation to equipment connecting it indirectly to the organic cannot be ‘read off’ it. In fact, what is seen is a mathematical–computational entity that yet appears as more vividly, concretely present than the organic thing that is often so tenuously visible.12 In systems biomedicine, there is a preference for models that are ‘of the same matter’ as the target domain – such as cell, tissue or animal models: these often count as more realistic, and as epistemologically privileged.13 A response from systems biomedicine is to try to position their models in the same terminology – in vivo, in vitro, in silico. Rhetorically, this addition of ‘in silico’ in a parallelism

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with ‘in vivo’ and ‘in vitro’ suggests a seamless continuity between these modalities of experimental models, a parallelism of matter to match the parallelism of form. It counters the perception that computational models are abstract, and gives them a matter – silicon – that is rhetorically suggested as being analogous to the matter of other models in biology. The very use of this rhetorical device in characterising experimental models already points to the crucial importance of sociability in constructing systems biomedicine: others must be persuaded, and, as we shall see, models must be constructed in accordance with the rhetoric, trying to make the parallelism as close to a reality as possible.

Realism, Really? There are several parallels between the enterprise of modelling in science and in art (by art, I mean art in the broad sense: including visual, performance and literary arts), starting with the difficulty of getting new modes of modelling accepted, which is analogous to getting new styles accepted in art. In both art and science, there are negotiations, tensions, rifts over what is to count as art, as science, as representation (or whatever label is thought to be at stake) in the face of rupture or difference with existing styles. In the case of models, the parallels with art go even deeper because what is at stake is precisely the same issue: the relationship whereby something – an organism, an equation, a portrait and so on – gains meaning or significance in virtue of appearing to ‘stand in for’, ‘point towards’ something else – another organism, a biological process, a particular person. Science and art are both domains where this relationship cannot be taken for granted; they both experiment with new ways of establishing the relationship, struggle to establish it, question the way it is currently or traditionally made, and try new ways of making it repeatedly. This insight into the continuity between science and art is not a new one. In the philosophy of modelling, the analogy between art and science falls into two camps. ‘Models as fictions’ accounts focus either on the accuracy of models or on their reference: for example, on questions concerning whether the idealisation of models results in inaccurate representations of the real world phenomenon modelled, just as in fiction events and characters are not depicted as they ‘really’ are; or on questions concerning whether the referents of models exist, and if so, whether their mode of existence is akin to that of fictional entities.14 ‘Models as metaphors’ accounts focus instead on the question ‘how do models work’, and their answer is: ‘in the same way as metaphors’. These accounts are not as immediately concerned with semantics and truth as they are with understanding something about how models in science are put together: the arrangement of elements that allows them to gain a particular purchase on the domain they are targeting.15 With these approaches, a different set of questions about truth and models emerges: this time, the questions emerge in the terms of the opposition between the metaphorical and the literal, and whether, on the ‘models as metaphors’ account, it is possible, finally, to literalise models, so that their truth (or not) can be evaluated.

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On these views of models as fictions, parallels between science and art are encouraged and enjoyed up to the limits of questioning the reality of scientific objects. If scientific models can be understood as fictions, it is only to the extent that, like fictions, their relation to reality is not straightforward. If they can be understood as operating like metaphors, it is only to the extent that, like metaphors, they are not literally true. The assumption, though, is generally that science is directed towards the real and the literal in ways that fictions and (for example) poetic metaphors are not and need not be. But this deep and long-standing assumption is precisely what we need to contest. The deficit account fails to take into consideration the different ways in which art and literature can be world-directed. The realist movement that reached its apogee in the late nineteenth century, and continued in various forms long after it was a specific movement, is but one expression of this. This form of realism often sought to elide any trace of process of production, and to deliver to the receiver a finished product, to be consumed rather than to interact with. A long tradition of critical theory has subjected realism to critique from several different perspectives: post-structuralism and deconstruction; broadly Marxist and historical materialist; and psychoanalytic, to name but three main trends. These are all accounts that refuse to accept at face value realism’s account of itself as producing works whose features are determined by the real or actual perceptual, social or moral world that they purport merely to convey. A classical critique of the pretensions of literary realism is Roland Barthes’s S/Z.16 Barthes proposes an entirely different picture of the realist text: one where the making of the text comes to the fore, and the interweaving of codes as being responsible for the production of an illusion of reality, a realist effect, which far from allowing real society to stamp itself on the work, forms what counts as realist. There are many other critiques in a similar vein, a whole movement of anti-realism, which has made any form of straightforward realism an impossible theoretical position. For a humanities scholar steeped in post-structuralism, deconstruction and postmodernism, it is difficult not to consider scientists’ use of terms like ‘realism’ and ‘representation’ as hopelessly naïve, and as evidence of a positivism that stubbornly lingers, or paradoxically becomes even more robust. Yet even across all artistic forms, it cannot be said that realism has succumbed before these critiques, and it continues as a more or less robust form, particularly in film and literature. At the same time, it is not necessary to be a card-carrying realist to be ‘world-directed’ in some way, and this impetus has taken on a huge variety of aesthetic forms and modalities. Whatever realism might be, univocal it certainly is not. But that is the point: world-directedness has different modes, different styles. Critiques of realism in critical theory began before similar moves in science studies and have several similarities. Typical of the critique of realism in critical theory is the demonstration of the constructed nature of realist works, bringing to the fore the processes of production involved in them. We see a very similar trend in science and technology studies (STS), starting out with a work that could be considered the STS counterpart to Barthes’s S/Z: Latour and Woolgar’s Laboratory Life.17 Science is described by Latour and Woolgar as a massive, concerted literary endeavour. Science’s objective is the persuasion of readers rather than the discovery and revelation of facts;

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hence it is mobilised around literary inscriptions. The influence of semiotics is evident in many key passages of the book, in particular the treatment of scientific discourse as a form of fiction, which, through textual characteristics, gives rise to a ‘truth effect’.18 The attention to inscriptions has continued to be developed within science and technology studies, with continued strong emphasis on the sociality within which inscriptions are embedded.19 A difference between STS as it would go on to be defined and practised, and the critical theory/semiotics from which Latour and Woolgar took inspiration, is the extent to which critical theory, in its various forms, gave precedence to the productive capacity of the matter of textuality – the writerly, the painterly, the grain of the voice: écriture, sémeiosis, the trace, among others. An example of an approach in science studies that stands out for developing and extending ideas in critical theory is HansJörg Rheinberger’s use of Derrida’s notions of différance, trace and grafting to talk about experimental systems.20 He writes that to see experimental systems as pervaded by différance [. . .] stresses that the system undergoes a play of differences and oppositions governed by its own operatortime, and at the same time that it decalates or displaces what at any given moment appear to be its borders.21 When the borderlines around systems are seen to be constantly displaced, experimental systems appear as grafts of other experimental systems in an ongoing grafting of one upon the other, in what is often a meandering path. The scientific enterprise is seen as essentially temporal, and not necessarily structured with the narrative coherence that a traditional history might give it (for example, from origins in the form of a problem to be solved or question to be investigated to the solution of the problem or the answering of the question). It may be seen to be ‘groping blindly’, or to be empirically meandering rather than having definitive goals determined by preset hypotheses. ‘The significance or, better, the significant units of the experimental system concatenate into a constantly changing signifying context. There is no direct progress toward a definite “meaning”—whatever “meaning” might mean here.’22 Episodes of discovery, or of definitive claims, are post hoc narrative reconstructions. This is the power of narrative to give form to episodes in time, and to demarcate the boundaries of a progress story. When the question of ‘faithfulness’ between scientific claim and real-world entity or process actually comes up, therefore, it cannot be considered apart from the narrative that draws the borders within which faithfulness can even be considered. Modelling is part of an experimental system; in fact, in the case of systems biomedical modelling, it is part of hybrid experimental systems. Whether ‘a model’ accurately represents its target domain is similarly a question of where the borders of its system are drawn, and through which narrative reconstructions they are drawn. Rheinberger’s strategy does not collapse the construction of scientific facts upon social construction; instead, he retains the typical humanities concern with textual forms of meaning-making, where processes of meaning that hinge upon the materiality of meaning systems (differing, tracing, grafting) are focused upon in their own right.

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The result is not so much an undercutting of objectivity for scientific claims as a different framing of this objectivity in an account that shows how it comes about that some scientific claims come to be endowed with a ‘scientific object’ and to be considered ‘within the truth’. For Rheinberger, textual processes of meaning are an ineliminable aspect of this: At a given moment and in a given research process, what, say, a microsome or a virus ‘represents’ – in the sense of how it is ‘produced’, how it is ‘brought forth’ – is an articulation of graphemes traced and confined by the procedures of the research process.23 The narrative elements of Rheinberger’s account are not a form of fictionalism. To adopt Rheinberger’s perspective on models does not lead to the conclusion that the entities they target are fictional rather than real, or that they are somehow inaccurate or only approximations of the truth. Textual and narrative processes produce experimental systems, together with the domain that they investigate: models, together with their targets. The question of whether they are ‘realistic’ can only be asked within bounded systems produced and constructed through these processes, and only at certain points of the ‘historiality’ of the science. The demand for realism made across disciplines in systems biomedical modelling may be premature, since what can be ‘realist’ in the current stage of ongoing hybridisation of models – or of grafting of experimental systems, in Rheinberger’s terms – is as yet undefined and indeterminate. However, that the demand plays such a prominent part in the interactions among disciplines also points to it as an important site of grafting, where the meaning of what it is to be realistic will be worked out at the same time as the experimental systems become interwoven.

Beyond Dualism These ways of addressing questions of realism, and related notions of faithfulness, representation and so on, lead to a disintegration of any neat dualism of model and target. We have already seen that talking about models as though they are clearly bounded things is highly problematic in the case of the models typical of systems biomedicine, since there is no single element that is a model, but rather a series of inter-related modelling processes with different objects, tools, techniques and visual displays. This view may lead to the temptation to overemphasise the active role of models in constructing the target domain. On this view, agency is seen as being all on the side of modelling, whereas the object that is modelled is passive. Modelling as agent forges the relationship whereby models can be said to be ‘of’ a target domain, and at the same time constitute the target domain. Different forms of constructivism (social, historical or post-structuralist/writerly) lead to variants on this view. Increasingly, however, the stark opposition between constructivism and realism is giving way before a number of different proposals for overcoming the persistent dualisms between subject and object, nature and culture, matter and meaning that

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have dogged Western thought for so long. A good example is Karen Barad’s agential realism, discussed in the Introduction to this volume, which locates agency in science’s objects as well as in science, in the non-human as well as the human.24 For Barad, the ‘subjects’, ‘objects’ and instruments of science are co-constituted through their intra-actions with each other. Far from being independently constituted and externally related, these are entangled with each other. Drawing upon the later work of Maurice Merleau-Ponty, Aud Sissel Hoel and I have proposed a non-dualist ontology around the notion of the measuring body.25 The measuring body is an instantiation of what Merleau-Ponty calls ‘flesh’, something that is neither subject nor object, neither consciousness nor substance, but rather ‘the formative medium of the object and the subject’.26 Our approach focuses on the mediation of scientific domains that occurs through the measuring body as an interconnection of perceptual, symbolic and technological modalities of expression in multi-dimensional environments. The measuring body is not the body of a discrete being, but a particular way of intertwining modalities of expression, entities and environments, specifying what counts as the ‘real’ things and processes of an environment – for example, a scientific domain. People, as well as other objects, are caught up and operate in the measuring body, to be measured as well as measuring. By measuring we mean a kind of standard setting, a system of equivalences and differences between modalities and things; such systems have distinctive styles of parsing and interconnecting things. They emanate from a particular way of opening out onto the world – a particular stance, one might say; but they are never unidirectional, as the things that are specified through such stylised systems are intertwined in reciprocal, mutual relations. Whatever opens onto things is also opened onto by other things with which they are intertwined. There is a complicity between seers and seen, between interrogators and interrogated. We underscore the continuities between science and art as expressive modalities of meaning, in that they do not merely communicate pre-existent meanings or represent in an external way, but forge new styles of meaning and knowing, and new domains (or environments), where words like ‘real’ and ‘realistic’ come to have determinate – or at least working – meanings. If scientific domains are specified through their measuring bodies, then trying to cross or connect them – for example, through interdisciplinarity – entails encountering and grappling with different styles, in an encroachment of styles upon each other that reshapes and respecifies that domain, and everything, everyone, implicated in it.27 The positions that I have outlined – Barad’s, Hoel’s and my own – are just a small sample of current attempts to break out of the dualisms of subject and object, mind and matter, knower and known. These dualisms are deeply entrenched in Western thought and difficult finally to push out and have done with: hence, the many different attempts at building a non-dualist framework for thinking, from different angles and perspectives. Having started off with critiques of realism, we are now at a point where our main concern is not to deconstruct ideas about faithfulness and accuracy of representation. Rather, we need to understand how the enterprise of rendering the

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world, knowing and acting in it, in its intertwinement of bodies, technologies, expressivities, forms ourselves and our world, and what may be the forms of responsibility that flow from that.28

Modelling Systems Biomedicine and its Patients Going beyond a critique of realism to accounts of world-directedness that attempt different frameworks for non-dualist thinking opens possibilities for considering systems biomedicine as a domain that is modelled as it uses models to investigate biological and physiological processes. The models and the domain modelled are not externally constituted entities that are in a face-off with each other, as in a positivistic realism; rather, they are inextricably intertwined with each other, through, for example, the materiality and visuality of the different processes and activities involved in it. Systems biomedicine emerges as a grafted, entangled and intertwined domain, in which all of the elements are mutually defined, in complicity with each other, defining a style of realism. Implicated in this style are people, as well as other entities: for example, the patients and the public of systems biomedicine. Systems biomedicine promises a reconfiguration of disease, diagnosis and treatment that will better serve patients and ‘consumers’.29 In fact, in its data-intensive form, systems biomedicine must implicate us, not at the end of a pipeline that starts with science and ends with the diagnosis and treatment of people. As a mode of research, data-intensive systems biomedicine requires the active participation of individuals to provide data, either through consenting to their data being used and reused, or through self-monitoring on a variety of applications on their mobile devices, computers and different kinds of kit, and donating data. With this is born the idea of the patient or person as medical data generator. The whole enterprise of developing systems biomedicine frequently invokes the ‘digital patient’. This is conceived as an individualised model of each person, constructed from the ‘trillions of data points’ that an individual data generator could generate over a lifetime.30 However, the data from one person, as abundant as it might be, could not by itself be used to model the progression of a condition or disease, or be used to target diagnoses and treatments specifically to that person. For this, whole populations of data generators are required, so that statistical processes and computational methods can be used to make accurate predictions. Therefore this is both an individual and a community effort. On an individualist rhetoric, one’s ‘reward’ is that one receives one’s own personalised model on which to test the outcomes of different treatments. For example, on the website of the ‘Digital Patient Project’ there is the following patient-directed statement: The Digital Patient is an envisaged super-sophisticated computer program that will be capable of generating a virtual living version of yourself. When this is achieved, it will be possible to run ‘simulations’ of health and disease processes on the virtual or ‘digital’ you, and use the results to make predictions about your real health. It will also be possible to determine the best treatment specifically for you. This is termed ‘personalised medicine’, and is intended to be the future of healthcare.31

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Here we find the familiar dualisms around the virtual and the real, which run like a red thread throughout the project’s ongoing deliberations concerning what visualisations could be used to engage individual users. This is a challenge for the project, and in newsletters and other project reports there are traces of different solutions put forward at different times. The idea of an avatar as the main interface between ‘real’ and ‘digital’ patients is proposed; taking up prominent gaming devices such as Microsoft Xbox Live, it is suggested that it should be made to look like individual patients for ‘emotional intensification’.32 Although this idea does not find its way into the final project report, a further trace of it is an animated film showing a scenario of what such a consultation might be like. A patient is shown an avatar, which is at first of a generic human that (in the patient’s voice) is described as ‘breathing and moving its eyes’, and when made to jog, ‘started to sweat’. We hear the patient say that he does not understand what this has to do with his check-up, but he is then asked to stand on a platform and is scanned by a laser, and ‘suddenly the model on the screen changed and it was me . . . it even had my face,’ down to ‘all my skin blemishes’.33 As yet, we do not know what form something like the digital patient might take. This is a context where what ‘realism’ means will be as political a question as it is a representational one. With the extension of the modelling of systems biomedicine beyond science, into the clinic and well into the public space, we become part of that world that will become intertwined with modelling; those biological and physiological processes modelled are ‘ours’, in us, and our own being will be co-defined and co-constituted along with that of the models. What modelling and its relationship to the world become is a topic urgently requiring critical engagement on the part of the humanities scholar. Not only the science, but also the material, textual and visual interfaces – that is, the familiar territory of the humanities scholar – are crucial to the imaginary of science and public alike. This is an engagement that needs to work alongside modelling from as early as possible; we cannot wait until models are defined and entrenched to the point where they are too heavy to shift. This engagement with modelling is at the same time technoscientific, biological and social; it demands from us epistemic, aesthetic and ethical awareness and readiness in order to participate in the making of knowledge, the forms and styles of modelling and representing, and the ethico-political stakes in the enterprise. The complicity between modelling and world here takes on a political overtone, but tracing our way back to when science seemed to be ‘just science’, we will find it was always there.

Conclusion I opened this chapter by suggesting that one of the roles of the critical medical humanities scholar in a field such as systems biomedicine is to bring into the conversation about models a greater range of ways in which artefacts like models express and enact their world-directedness. Bringing forward examples such as Picasso is a way of opening up different perspectives on world-directedness, as this is experimented with in art as well as in science. When we do bring forward such examples with confidence and without accepting that the only thing that science might learn

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from art are the limitations of the relationship to the real (as in the deficit account of fictions), we are also able to acknowledge that modelling is productive and formative in just the ways that art has long known itself to be; that being ‘world-directed’ implies not representational accuracy between a model and its target, but an intertwinement of modelling apparatuses, languages, techniques, biology and people. The ontology of intertwinement, or other forms of non-dualism, does not neatly distinguish representers, representations and their objects; neither does it allow for neat parcellings-out of science and society; rather it focuses on the specific intertwinements that engender the worlds we inhabit and ourselves as inhabitants. Responsibility does not come after science ‘captures’ reality; if anything, it is even more pressing than science in its realist mode, since the logic of intertwinement brings a responsibility for the form that systems biomedicine takes across laboratory, clinic and world. For humanities scholars, taking on board the ontology of intertwinement implies accepting to participate in this responsibility, in the forming of the reality of something like systems biomedicine.

Further Reading Annamaria Carusi and Aud Sissel Hoel, ‘Towards a New Ontology of Scientific Vision’, in Catelijne Coopman, Janet Vertesi, Michael Lynch and Steve Woolgar (eds), Representation in Scientific Practice Revisited (Cambridge, MA, and London: MIT Press, 2014), pp. 201–22. Annamaria Carusi, Blanca Rodriguez and Kevin Burrage, ‘Model Systems in Computational Systems Biology’, in Juan M. Durán and Eckhart Arnold (eds), Computer Simulations and the Changing Face of Scientific Experimentation (Newcastle-upon-Tyne: Cambridge Scholars Publishing, 2013), pp. 118–44. Diana Coole and Samantha Frost (eds), New Materialisms: Ontology, Agency and Politics (Durham, NC, and London: Duke University Press, 2010). Lorraine Daston and Peter Galison, Objectivity (New York: Zone Books, 2007). Evelyn Fox Keller, Making Sense of Life: Explaining Biological Development with Models, Metaphors and Machines (Cambridge, MA, and London: Harvard University Press, 2002). Evelyn Fox Keller, ‘Models of and Models for: Theory and Practice in Contemporary Biology’, Philosophy of Science 67 (2000), pp. 72–86. Mary S. Morgan and Margaret Morrison, Models as Mediators: Perspectives on Natural and Social Science (Cambridge: Cambridge University Press, 1999). Denis Noble, The Music of Life (Oxford: Oxford University Press, 2006). Hans-Jörg Rheinberger, Toward a History of Epistemic Things: Synthesizing Proteins in the Test Tube (Stanford: Stanford University Press, 1997). Franck Varenne, Formaliser le vivant: lois, théories, modèles (Paris: Hermann, 2010).

Notes 1. Although there are earlier precursors, systems biology is a postgenomic science. See Maureen A. O’Malley and John Dupré, ‘Fundamental Issues in Systems Biology’, BioEssays: News and Reviews in Molecular, Cellular and Developmental Biology 27.12 (2005), pp. 1270–6.

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4.

5.

6.

7. 8. 9.

10.

11.

12.

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Systems approaches are also currently being deployed in research into ‘holistic’ medicine; see, for example, Volker Scheid, ‘Holism, Chinese Medicines and Systems Ideologies’, in this volume, pp. 56–86. See Olaf Wolkenhauer, ‘Why Model?’, Frontiers of Physiology 5 (2014), p. 21. See, for example, Tarja Knuuttila and Andrea Loettgers, ‘Modeling and Experimenting: The Combinatorial Strategy in Synthetic Biology’, in Philosophy of Scientific Experimentation: A Challenge to Philosophy of Science (Pittsburgh, 15–17 October 2010); and Annamaria Carusi, Blanca Rodriguez and Kevin Burrage, ‘Model Systems in Computational Systems Biology’, in Juan M. Durán and Eckhart Arnold (eds), Computer Simulations and the Changing Face of Scientific Experimentation (Newcastle-upon-Tyne: Cambridge Scholars Publishing, 2013), pp. 118–44. These are movies that show the outcome (in a qualitative modality) of running the simulation of a dynamical process, as it occurs through time. They can take many different forms, from highly ‘realistic’ to highly abstract; which form they do take is dictated by a combination of epistemic and social factors. See Annamaria Carusi, ‘Scientific Visualisations and Aesthetic Grounds for Trust’, Ethics and Information Technology 10.4. (2008), pp. 243–54; and Annamaria Carusi, ‘Computational Biology and the Limits of Shared Vision’, Perspectives on Science 19.3 (2011), pp. 300–36. As in most scientific contexts, vision is dominant; different sensory modalities and different perspectives on vision enlarge our understanding of the role of sensory modalities in medical knowledge. See, for example, Jennifer Richards and Richard Wistriech, ‘The Anatomy of the Renaissance Voice’, in this volume, pp. 276–93; and Heather Tilley and Jan Eric Olsén, ‘Touching Blind Bodies: A Critical Inquiry into Pedagogical and Cultural Constructions of Visual Disability in the Nineteenth Century’, in this volume, pp. 260–75. See also Soraya de Chadarevian, ‘Models and Molecular Biology’, in Soraya de Chadarevian and Nick Hopwood (eds), Models: The Third Dimension of Science (Stanford: Stanford University Press, 2004), pp. 339–68. See Karin Knorr-Cetina, ‘Culture in Global Knowledge Societies: Knowledge Cultures and Epistemic Cultures’, Interdisciplinary Science Reviews 32.4 (2007), pp. 361–75. For detailed discussion and examples, see Carusi, ‘Computational Biology and the Limits of Shared Vision’. See Evelyn Fox Keller, Making Sense of Life: Explaining Biological Development with Models, Metaphors and Machines (Cambridge, MA and London: Harvard University Press, 2002). For more detailed discussion, see Carusi, ‘Computational Biology and the Limits of Shared Vision’, and Annamaria Carusi, ‘Personalised Medicine: Visions and Visualisations’, Tecnoscienza 5.1 (2014). For the contrast between images and diagrams, see Michael Lynch, ‘Discipline and the Material Form of Images: An Analysis of Scientific Visibility’, Social Studies of Science 15 (1985), pp. 37–66. Evelyn Fox Keller, ‘The Biological Gaze’, in George Robertson, Melinda Mash, Lisa Tickner, Jon Bird, Barry Curtis and Tim Putnam (eds), Future Natural (London: Routledge, 1996), pp. 107–21; for how life processes are interconnected with the visual, see Hannah Landecker, ‘The Life of Movement: From Microcinematography to Live-Cell Imaging’, Journal of Visual Culture 11.3 (2013), pp. 378–99. Augustin A. Araya, ‘The Hidden Side of Visualization’, Techné 7.2 (2003), pp. 27–93.

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13. For more on the epistemic weighting of experiments and models, see Mary S. Morgan, ‘Experiments Versus Models: New Phenomena, Inference and Surprise’, Journal of Economic Methodology 12.2 (2005), pp. 317–29; and for application to systems biology, see Sabina Leonelli and Rachel A. Ankeny, ‘Re-Thinking Organisms: The Impact of Databases on Model Organism Biology’, Studies in History and Philosophy of Biological and Biomedical Sciences 43.1 (2012), pp. 29–36. 14. For example, see John Woods (ed.), Fictions and Models (Munich: Philosophia Verlag, 2010). 15. The best-known example is Mary B. Hesse, Models and Analogies in Science (London and New York: Sheed & Ward, 1963). 16. Roland Barthes, S/Z (New York: Hill & Wang, 1974) [French original 1970]. 17. Bruno Latour and Steve Woolgar, Laboratory Life: The Construction of Scientific Facts (Princeton: Princeton University Press, 1986). 18. Ibid., p. 184. 19. See, for example, Catelijne Coopman, Janet Vertesi, Michael Lynch and Steve Woolgar (eds), Representation in Scientific Practice Revisited (Cambridge, MA, and London: MIT Press, 2014), which follows upon the now classic Michael Lynch and Steve Woolgar (eds), Representation in Scientific Practice (Cambridge, MA: MIT Press, 1990). 20. Hans-Jörg Rheinberger, ‘Experimental Systems: Historiality, Narration, and Deconstruction’, Science in Context 7.1 (1994), pp. 65–81. 21. Ibid., pp. 71–2. 22. Ibid., p. 76. 23. Ibid., p. 77. 24. Karen Barad, Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning (Durham, NC, and London: Duke University Press, 2007). For more on the notion of entanglement, see Des Fitzgerald and Felicity Callard, ‘Entangling the Medical Humanities’, in this volume, pp. 35–49; and on human–non-human entanglements, see David Herman, ‘Trans-species Entanglements: Animal Assistants in Narratives about Autism’, in this volume, pp. 463–80. 25. Aud Sissel Hoel and Annamaria Carusi, ‘Thinking Technology with Merleau-Ponty’, in R. Rosenberger and P. P. Verbeek (eds), Post-Phenomenological Essays in Human-Technology Relations (Lanham, MD: Lexington Books, 2015, pp. 73–8. 26. Maurice Merleau-Ponty, Visible and Invisible, trans. A. Lingis (Evanston: Northwestern University Press, 1968), p. 147. 27. For more detailed discussion and applications to computational biology, see Annamaria Carusi and Aud Sissel Hoel, ‘Towards a New Ontology of Scientific Vision’, in Coopman et al. (eds), Representation in Scientific Practice Revisited, pp. 201–22; and for neuroscience images, see Annamaria Carusi and Aud Sissel Hoel, ‘Brains, Windows and Coordinate Systems’, in Annamaria Carusi, Aud Sissel Hoel, Timothy Webmoor and Steve Woolgar (eds), Visualization in the Age of Computerization (London: Routledge, 2014), pp. 145–69. 28. Martyn Evans explores similar themes on dualisms, non-dualisms and the articulations of a critical medical humanities in ‘Medical Humanities and the Place of Wonder’, in this volume, pp. 339–55. 29. See, for example, Leroy Hood and Mauricio Flores, ‘A Personal View on Systems Medicine and the Emergence of Proactive P4 Medicine: Predictive, Preventive, Personalized and Participatory’, New Biotechnology 29.6 (2012), pp. 613–24.

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30. Ibid. 31. This is a sub-project of the Virtual Physiological Human Network of Excellence, a major European computational modelling for systems biomedicine project. The project website is at: (accessed 14 July 2015). For a more detailed discussion, see Carusi, ‘Personalised Medicine: Visions and Visualisations’. 32. Digital Patient Project, Discipulus News: First Draft: Roadmap (accessed 14 July 2015). 33. (accessed 14 July 2015).

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3 HOLISM, CHINESE MEDICINE AND SYSTEMS IDEOLOGIES: REWRITING THE PAST TO IMAGINE THE FUTURE Volker Scheid

Introduction his chapter explores the articulations that have emerged over the last halfcentury between various types of holism, Chinese medicine and systems biology. Given the discipline’s historical attachments to a definition of ‘medicine’ that rather narrowly refers to biomedicine as developed in Europe and the US from the eighteenth century onwards, the medical humanities are not the most obvious starting point for such an inquiry. At the same time, they do offer one advantage over neighbouring disciplines like medical history, anthropology or science and technology studies for someone like myself, a clinician as well as a historian and anthropologist: their strong commitment to the objective of facilitating better medical practice.1 This promise furthermore links to the wider project of critique, which, in Max Horkheimer’s definition of the term, aims at change and emancipation in order ‘to liberate human beings from the circumstances that enslave them’.2 If we take the critical medical humanities as explicitly affirming this shared objective and responsibility, extending the discipline’s traditional gaze is not a burden but becomes, in fact, an obligation. With that in mind, this chapter seeks to accomplish three inter-related goals. It is first an inquiry into the historical processes whereby Chinese medicine, holism and systems biology have come to be entangled with each other in the present. The term holism is not originally Chinese and was only applied to Chinese medicine from the 1950s onward. Whether or not systems biology, the computational and mathematical modelling of complex biological systems, is holistic, as some of its proponents claim, also remains a contested issue. Holism clearly means different things to different people. Yet, in the early twenty-first century, those engaged in constructing an interface between Chinese medicine and systems biology widely agree that their project not only honours the holistic foundations of their respective traditions, but also is, in fact, driven by this shared commitment to holism and the development of a scientifically based personalised medicine. This raises the question of how this consensus was achieved and what it denotes.

T

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At a second level, the unfinished nature of this emergence opens up a space precisely for the kind of critical engagement to which this volume aspires. It is an engagement that pertains not merely to the domain of the medical but also to the constitution of the medical humanities themselves. For, in its very emergence, the entanglement between systems biology and Chinese medicine, between what some see as the cutting edge of twenty-first-century science and a medical tradition that claims to date back two thousand years, questions the relevance and validity of the discipline’s all too narrow focus on biomedicine in an age of criss-crossing globalisations. Finally, I will bring the question at the heart of all critique to bear on this chapter. This is a question faced daily by Chinese medicine, systems biology, the medical humanities and, in the end, each one of us: namely, how to relate ourselves to the ongoing transformations of the world by the as yet unfinished project of modernity. These questions rehearse, from a different perspective, issues also addressed in the chapters by Jolly and by Fitzgerald and Callard. To these ends, I will trace three different but repeatedly intersecting genealogies of the present. The first two of these genealogies explore the different trajectories along which Chinese medicine became holistic in China and the West. My third genealogy briefly charts the emergence of systems biology as a holistic science. Although the pathways along which these three genealogies progress over time are distinctly different, they share common roots and ultimately converge on the joint goal of enhancing human potential for calculating life. In practice, the personalised medicine imagined to emerge from the integration of Chinese medicine and systems biology thus ends up working towards broadly similar goals to those pursued by the reductionist medicine and science against which these practices otherwise define themselves. In the concluding section I will seek to resolve this apparent contradiction by reading them through the critique of modernity elaborated by the famous revolutionary and Chinese medicine scholar Zhang Taiyan 章太炎.

Common Roots: Holism Before and During the Interwar Years Holism, like Chinese medicine or systems biology, is a fuzzy concept that cuts across many of the boundaries and categories that shape the institutional and intellectual landscape in which my three genealogies are situated. Holism is widely mobilised by practitioners of complementary and alternative medicines (CAM) to distinguish their own practices from biomedicine.3 Critics of CAM, on the other hand, point to the fact that biomedicine has always embraced holism as evidence for the (in their eyes) delusions of CAM practitioners.4 Holism is often defined in opposition to reductionism, but it can also be seen as complementary to it.5 It points to a specific epistemic orientation or even virtue, as developed, for instance, in Gestalt psychology, yet also designates an ontology where, to use a well-worn trope, the whole is always greater than its parts.6 For some, holism points to structures, for others to process.7 Such fuzziness does not arise from nowhere. Its roots lie in two different yet interrelated and criss-crossing conceptions of holism that developed out of Germany from

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the eighteenth century onward: one cultural, structural and idealist, the other focused on science, process and material reality.8 Cultural holism embraces the idea, developed by Herder and Humboldt and supported by Kantian idealism, that cultures constitute integrated wholes that orient their members towards the world in unique ways. As a scalable concept, such holism can equally be applied to persons, nations or indeed any bounded system in its relations to the outside world. A historically related yet distinctly different notion of holism ties into Hegelian dialectics and its successors. This holism focuses on the search for the laws that underpin process, history and emergence. It is most clearly formulated in Friedrich Engels’s critique of German idealism. Engels argued that all parts of the world are fundamentally inter-related, that these parts, even though they may be material, are always transient and thus historically constituted, and that a ‘science of interconnections’ is needed to understand this interrelated world.9 Cultural/structural holism is conservative in orientation, emphasising stability and difference from that which is not self. Epistemologically, it emphasises ground or context as the ultimate source for understanding life, leading directly to the emergence of the humanities as a group of disciplines that can probe this ground through technologies of ‘Verstehen’.10 Engels’s holism, on the other hand, was progressive and dynamic, aimed at the formulation of scientific laws and organising principles that revealed to humans the world as a field of emergently related things.11 This concern for relationships distinguishes Engels’s holistic vision of science from the more conventional reductionist approach that seeks to build up an understanding of the world from individual building blocks, even if it shares with it an ultimate interest in manipulation and control. This chapter cannot explore in detail the complex entanglements between these different notions of holism, or how they reflect Germany’s troubled path towards modernity. My starting point, instead, is the interwar years. By then, holism had become an important resource for people across Europe, the US and beyond – but once again specifically in Germany – for dealing with what Max Weber, in 1918, had famously analysed as a widely felt disenchantment with the modern world.12 The very word ‘holism’ (as opposed to ideas or practices designated as such today), as well as related words like ‘emergence’ or ‘organicism’, date from this time.13 It was coined in 1926 by Jan Smuts to describe a perceived tendency of evolutionary processes towards the formation of wholes, granting these wholes a special onto-epistemic significance that parts lack.14 This was cultural holism now underpinned by evolutionary science and deployed by Smuts not only as a tool for grasping the coming into being of the world but also as an ideological justification for the development of Apartheid in South Africa. In Weimar Germany and then under Nazism, holistic science became a mainstream academic endeavour, once more intermingling cultural politics and serious scientific research.15 Holistic perspectives also became popular in the interwar years among academics and the wider public throughout the UK and US. In France, it was associated with vitalist philosophies and the emergence of neo-Hippocratic thinking in medicine, manifesting the unease many people felt about the shifts that biomedicine was undergoing at the time.16 Even in China, young thinkers increasingly familiar with

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the latest Western philosophies began to employ holism as a tool for understanding the world and for developing strategies of resistance against Western imperialism. It is to these troubled times that all of my three genealogies trace back, albeit along very different paths.

The First Genealogy: Entangling Chinese Medicine and Holism in China Holism is not an ancient Chinese term. It is not, in fact, a Chinese term at all. 整體觀念 zhengti guannian (sometimes simplified to 整體觀 zhengti guan), the Chinese word we conventionally render into English as holism, is a compound term that more literally translates as ‘the conception (or idea) of wholes’. The Comprehensive Chinese Word Dictionary (漢語大字典 Hanyu dazidian) defines zhengti or ‘whole’ with passages from the works of Mao Zedong 毛澤東 (1893–1976) and Ai Siqi 艾思奇 (1910-66), a Marxist philosopher and populariser of dialectic materialism. Guannian, the second part of the compound word, is originally a Buddhist term referring to the direction of one’s attention and thinking towards a specific object. In its etymology, then, zhengti guannian already points to hybrid entanglements, to ways of thinking and perceiving the world imported into China from ancient India and modern Europe, assimilated into native discourse and practice, gaining and losing meanings and referents along the way. Mao Zedong and Ai Siqi’s interest in wholes stemmed from their reading of European dialectical materialists, specifically Engels.17 At a historical juncture when Western rationality, personified as ‘Mr Science’ (賽先生 sai xiansheng), was replacing Confucius as a new cultural hero in the eyes of progressive Chinese, Engels’s ‘science of interconnections’ offered itself as an exciting new perspective on a familiar world constituted by dynamic relationships for over two thousand years. Yet, by reading materialist dialectics through concepts like the ‘interpenetration of opposites’ (通變 tongbian) that had traditionally been a key tool for grasping this relational world, Chinese thinkers fundamentally changed the emphasis of Engels’s thinking.18 Understanding change and transformation (變通 biantong) in order to act effectively in a complex world required that the situation be grasped in its entirety. In the hands of Mao and Ai, ‘dialectics’ (辯證 bianzheng) now replaced older techniques as the preferred way for doing so. Ultimately, however, the focus of their attention remained on the processes that mattered rather than on the matter of things.19 Not by accident are Mao Zedong’s two most influential works entitled ‘On Practice’ (實踐論 Shijian lun) and ‘On Contradiction’ (矛盾論 Maodun lun). Presenting dialectics in terms that resonated with long-established modes of thought helped Chinese intellectuals to develop an enthusiasm for these new ideas and to employ them in order to modernise their worlds.20 Chinese medicine is one field where these processes played themselves out in exemplary fashion. Individual physicians had begun to draw on Marxist dialectics in the 1930s in their struggle to define a space for Chinese medicine in a healthcare system increasingly modelled on Western

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notions of science, professionalisation and bureaucratic governance. However, it was only after the establishment of the People’s Republic in 1949 that these ideas became central to the definition of Chinese medicine itself. Through a protracted process analysed in detail by both sinophone and anglophone historians, the indigenous practice of pattern differentiation (辨證 bianzheng), which is a homonym of the Chinese term for dialectics (辯證 bianzheng), was aligned with then-current ideological trends to become the defining feature of Chinese medicine. In true (Chinese) dialectical fashion, pattern differentiation could then be opposed to the Western medical practice of ‘disease differentiation’ (辨病 bianbing) in order to emphasise Chinese medicine’s uniqueness; but it could also be aligned with it in a meeting of opposites to create new forms of integrated medicine.21 It was in this context that holism was gradually defined as the onto-epistemological ground that allowed the effective mobilisation of pattern differentiation in clinical practice. In 1955, two papers were published in Chinese medicine journals that made references to holism as a distinguishing feature of Chinese medicine. One of these detailed the Chinese medicine treatment of nephrological disorders, which, in the absence of dialysis and kidney transplants, was an important focus of Chinese medicine at the time. The other was a more theoretical discussion of yin/yang thinking by Qin Bowei 秦伯未 (1900-70), one of the chief architects of modern institutionalised Chinese medicine.22 One year later, in 1956, a total of eleven papers addressing themselves to holism were published by prominent scholar physicians. These papers constituted a concerted effort to demonstrate to the country’s leadership that Chinese medicine was a science grounded in a single overarching theoretical framework: namely, holism. In mid-1950s Maoist China, this was a shrewd political move. It aligned Chinese medicine with dialectical materialism and thereby transformed it from an assemblage of experience-based techniques into an ideologically exemplary (proto-) scientific practice worthy of state support. It also, however, significantly changed Chinese medicine itself.23 Over subsequent years, publications referring to holism as a central element of Chinese medicine steadily increased. In 1959, only four years after his still somewhat defensive paper on yin/yang thinking, Qin Bowei wrote a textbook entitled Introduction to Chinese Medicine (中醫入門 Zhongyi rumen) that placed holism at the very core of Chinese medicine.24 Qin’s textbook, published with the official support of the Ministry of Health through its People’s Medical Publishing House, was aimed at ‘the increasing number of people who in the course of recent years have expressed their wish to study Chinese medicine’. The young Chinese students Qin was referring to needed a method whereby they could make sense of ancient knowledge from within their modern intellectual habitus. Qin’s Introduction thus does not begin with yin/ yang or the human body as explored in Classical texts. Instead, it opens up with a discussion of ‘holism’ and ‘pattern differentiation’ as the defining characteristics of Chinese medicine. Only after the importance of these fundamental concepts has been established is their application explained: first on the level of yin/yang thinking and the body’s organisation, then on the level of clinical practice.

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This mode of presentation has since become the blueprint for discussing the theoretical foundations of institutionalised Chinese medicine. Expunging all traces of the origins of this accommodation in the specific political context of the 1950s, Chinese medicine physicians today read European holism and dialectics back into ancient texts without experiencing any apparent sense of discontinuity. As in the political and philosophical domain, these exegetic techniques were facilitated by resonances between the concept of holism in the dialectic materialist writings from which it was borrowed and long-established modes of thinking within China. But such resonances do not establish equivalence between ‘a world of mysterious continuity that operates through change and between differences’25 and one constituted by objects and their connections, even if these are perceived as emergent. Rather, such convergence tends to entangle hitherto unrelated concepts within new modes of practice that develop propensities of their own.26 As Chinese thinkers developed the notion of Chinese medicine’s intrinsic holism further in the course of the 1980s and 1990s, bringing it into conjunction with cybernetics and systems theory, these initially hidden propensities became ever more clearly exposed. The political context enabling these new transformations was Deng Xiaoping’s 鄧小平 programme of the four modernisations (of agriculture, industry, the military, and science and technology) and his policy of opening China to the West. In Deng’s view, science and technology were (ideally) universally available and intrinsically value-free productive forces that needed to be harnessed in order to catch up with the West. Beginning in the late 1970s, Chinese intellectuals thus turned to cybernetics and systems theory in order to articulate notions of science that were at once intrinsically Chinese, ultra-modern and politically correct. Drawing on Ludwig van Bertalanffy, Alvin Toffler, Illya Prigogine and a host of other newly accessible Western authors while continuing to honour Engels, Lenin and Mao Zedong, the party ideologue Wu Jie, for instance, elaborated a general ‘Systems Dialectics’ that attempted to understand the world through holistic thinking.27 He detected ‘rudimentary holistic thinking’ in ancient Chinese as well as Greek philosophy, explicitly including the Inner Canon in this list.28 The more fully worked-out systems dialectics of the present, however, was to the technological transformations of the present what Engels’s dialectical materialism was to the Industrial Revolution.29 Significantly, though, the purpose of this new dialectics was no longer revolution but ‘holistic optimisation’: the benign management by the state of all aspects of society, from economics and social coherence to ideology and culture, war and peace, via a newly powerful understanding of systems.30 Revealingly, it was not a Chinese medicine physician but an engineer with a background in cybernetics who first discussed Chinese medicine from a systems perspective. In 1981, Qian Xuesen 錢學森 (1911–2009), one of China’s ‘superscientists’, whose contributions to the nation’s military space and aeronautics programmes had given him direct access to Chinese Communist Party (CCP) leaders and the power to speak on any issue of his choice, asserted that Chinese medicine was akin to cybernetics and systems science in grasping the world from a holistic perspective.31 Chinese medicine,

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in other words, did not have to ‘catch up’ with science but the natural sciences were gradually taking hold of a perspective that had been present in China all along. Chinese medicine physicians readily took up this new opportunity to define their tradition as a systems science. As Liu Changlin 劉長林, a contributor to these debates, put it: ‘As the entire traditional Chinese culture constitutes a whole, so also Chinese medicine reflects the same systems thinking.’32 Others argued that the famous Needham question (Why had China been overtaken by the West, given its earlier technological advantages?) was no longer meaningful, for we were now witnessing the coming together on equal terms of Western science and East Asian cultural wisdom.33 The most audacious writers even proclaimed that the twenty-first century would be the century of Chinese medicine.34 Beyond the political opportunism and nationalist chauvinism that inspired such claims, some more sophisticated syntheses can also be discerned. Zhu Shina 祝世納, widely acknowledged as the first author to discuss Chinese medicine systematically with reference to systems science and cybernetics, summarised Chinese medicine with the help of two ideograms: 辯 bian, referring to the dialectic viewpoint Chinese medicine takes to grasp its objects and make clinical decisions; and 統 tong, denoting a focus on whole systems and their regulation. Read together, bian and tong allude to biantong 變通, a common phrase in traditional medical writings where it referred to the capacity of master physicians to act effectively by responding flexibly to the constantly changing nature of disease. This phrase, in turn, can be read back all the way to the Book of Changes (易經 Yijing), a key Classical text since the second century bce, and its emphasis on ‘the comprehensive observation of changes’, 通變 tongbian. This concept constitutes a primary source of inspiration for the later development of much of Chinese philosophy, including, as we saw before, Ai Siqi’s and Mao Zedong’s reading of Engels. In the hands of a writer like Zhu Shina, holism, systems theory, cybernetics, dialectics, Chinese medicine, philosophy and culture thus merge into a single multi-faceted practice that easily criss-crosses boundaries between different historical epochs and cultural domains.35 Yet, precisely because thinkers like Zhu ground contemporary systems holism in ancient models of thought and vice versa, they erase their differences. In doing so, they enable others to insert Chinese medicine into the world of twenty-first-century techno-science without needing to deal any longer with complex problems of intercultural translation.

The Second Genealogy: Entangling Chinese Medicine and Holism in the West Knowledge about Chinese medicine had entered Europe from the seventeenth century onward, but interest waxed and waned in relation to wider evaluations of China and Chinese culture.36 The most recent and prolonged period of attraction has its origin in France during the interwar years, where a widespread interest in vitalist philosophies provided a fertile seedbed into which the mysterious but therefore also attractive practice of acupuncture, suitably translated into vitalist terms, could be

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transplanted.37 It was from France that interest in acupuncture travelled to other European countries and then to the Americas and Australia, where it was gradually attached to holistic thinking. The first Western discussion of Chinese medicine as explicitly holistic thus stems from Germany, where naturopathic medicine and holistic Gestalt perspectives had an established pedigree. It can be found in a 1951 essay entitled ‘On the Holistic Perspective in the Chinese Healing Art’ (Über Ganzheitsbetrachtung in der Chinesischen Heilkunst), published in a biomedical journal and dedicated to the famous nutritionist Erich Grafe, recently removed from his post at the University of Würzburg because of his Nazi allegiances.38 The essay depicts medicine as a vocation that must go beyond a concern with bodies to a more comprehensive care for life, a concern that specifically includes attending to the soul. J. Otto, the author of the essay, is not widely known in Chinese medical circles today and there is no evidence that his ideas had any direct influence on other authors in the field. They are reflective, however, of tendencies that become visible again and again in Western depictions of Chinese medicine as holistic over subsequent decades. These include an equation of Chinese medicine with Chinese culture and a reading of holism as a concern specifically for the integration of body, mind and spirit. Otto refers to the German physician Hübotter, who had published an exhaustive and well-received account of Chinese medicine in 1929, and to Richard Wilhelm’s famous translations of the Book of Changes, first published in 1923. Hübotter did not accord much practical value to Chinese medicine, yet he portrays it sympathetically as embodying all of the positive aspects of a great culture. Wilhelm, likewise, argued that the Book of Changes affords a comprehensive view of the formations of life to place [the reader] in a position to shape his life organically and independently so that it comes into accord with the ultimate MEANING (sic), which lies at the root of all that exists.39 Chinese culture is thereby brought into a direct relationship with holism, enabling a self-fashioning of existence that derives power from a mode of knowing beyond that of reductionist science. Joseph Needham, the first Western historian of science to take China seriously, used the term ‘organicism’ rather than holism to refer to ‘the great movement of our time towards a rectification of the mechanical Newtonian universe by a better understanding of the meaning of natural organisation’.40 Like myself, he traced the roots of this movement back to Germany, but interestingly not to Germany’s engagement with modernity, but rather to the philosopher and polymath Gottfried Wilhelm Leibniz (1646–1716), who he suggests may have been influenced, via the Jesuits, by Chinese neo-Confucianism.41 Like so much else in the present story, Needham’s hypothesis is, historically, extremely problematic. It does, however, reflect a wider desire to find in China the possibility of a science untainted by reductionism – and thereby a future that would be able to cash in on modernity’s promise of progress without having to pay the price of disenchantment. This vision was elaborated even more clearly in C. G. Jung’s foreword to the English translation of Wilhelm’s I Ching, which he wrote in 1949. Jung followed

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Wilhelm in portraying the Book of Changes as expressing the essential wisdom of Chinese culture, which he variously equated with ‘the Chinese mind’, ‘the old tradition’ and ‘Taoist philosophy’. What made this ancient knowledge relevant even today and especially to the West, according to Jung, were resonances with developments taking place in physics that were shaking science and its ‘axioms of causality’ to the ground.42 Ancient China and quantum physics, in Jung’s mind, mapped out two different routes towards the same truth. One of Jung’s students in prewar Europe, a participant in his Eranos seminars and a lecturer at his institute in Zurich was Frederic Spiegelberg (1896–1994), a scholar of Asian religions who had also studied with the theologian and philosopher Paul Tillich and with Martin Heidegger. In 1937, Spiegelberg emigrated to the US, where he eventually became Professor of Indian Religion and Culture at the University of California at Berkeley’s Department of Asian Studies. In 1951, the same year that Otto published his article on Chinese medicine, Spiegelberg and local businessman Louis Gainsborough established the American Academy of Asian Studies (AAAS) in San Francisco, which popularised Asian philosophies, religions and spiritual practices throughout the Bay Area. Besides Spiegelberg himself, the most influential teacher at AAAS was the young British philosopher Alan Watts (1915–73).43 Spiegelberg had met Watts in London en route to the US and was sufficiently impressed to invite him to join the AAAS faculty. Watts’s early followers included Beat luminaries Jack Kerouac, Stephen Snyder and Allen Ginsberg, who further popularised Asian spirituality among their own generation and the hippies that followed them. Spiegelberg and Watts also influenced the foundation of the Esalen Institute on California’s Big Sur in 1961, sometimes described as the most important laboratory in the development of 1960s counter-culture, whose seminary organisation was directly modelled on Jung’s earlier Eranos seminars in Zurich. In these seminars, Esalen hosted an eclectic mix of speakers and activists, notably Fritz Perls, another German émigré, inventor of Gestalt therapy and former assistant to Kurt Goldstein, whose book The Organism is widely viewed as one of the classics for a holistic conception of the organism; Abraham Maslow, an influential proponent of a holistic notion of spiritual health, who counted the German Gestalt psychologist Max Wertheimer as one of his mentors and was a great admirer of von Bertalanffy’s organicist systems theory;44 Gregory Bateson, anthropologist, cybernetician and proponent of systems thinking as a meta-theory for science; and Feng Gia-Fu 馮家福, a Taoist teacher, calligrapher and translator of the Book of Changes and the Inner Canon. Other visitors who shaped the discourse at Esalen and were, in turn, influenced by its attempts at synthesising spirituality, mysticism and science were Gary Zukav and Fritjof Capra, two physicists who followed Carl Jung in positing parallels between ancient Asian wisdom and modern physics.45 There was much more to the AAAS and Esalen’s melange of people, ideas and practices from Asia, Europe and the US than can be recounted here. Its influence on the development of Chinese medicine in the West was indirect and diffusionist rather than direct and causative. Their core vibrations, nevertheless, can be clearly outlined and

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serve as a case study for how the entanglement of holism and Chinese medicine developed in the West. Esalen’s many links to Weimar Germany encouraged a perception of wholes across multiple domains – from organisms to human beings to cultural traditions – that combined Romantic yearnings for a life less disenchanted with an appreciation of systems science, cybernetics and quantum physics, and a fascination with high Asian cultures. West Coast Beats, hippies, academics and social activists added a more rugged individualism, concern for the environment, and religious spirituality, but chose to leave the murkier aspects of holism in Nazi Germany, Zen Buddhism’s relationship with Japanese militarism, or Jan Smut’s Apartheid of cultural wholes unexplored. At the intersections of these intellectual currents, Chinese medicine’s holism came to be seen as an essential attribute of the culture from which it hailed, as well as a living example of the holistic practices to which the ‘West Coast renaissance’ aspired.46 Evolutionary holism also offered up a vision for how to deal with the varied mixture of ideas, practices and cultures thus assembled, for, just as individual wholes extend their parts, different traditions could now be merged into larger systems that cancelled out individual deficiencies while enhancing mutual strengths; for, as we know, the whole is always bigger than its parts. Channelling Hegel and Engels, writers like Fritjof Capra detected the inexorable movement of history towards a turning point where reductionist modernity would be replaced by a more holistic civilisation informed by ‘a systems view of life’.47 Already in the 1980s, Capra had identified Chinese medicine as an important platform for developing the holistic medicine of the future that would combine the best of all worlds. It would utilise Chinese medicine’s existing focus on the whole person – body, mind and spirit – but overcome its limited individualist perspective by aligning it with contemporary ecological concerns.48 A similar vision is articulated by Prince Charles, one of the highest-ranking advocates of holistic medicine on the world stage. In a speech delivered at the World Health Assembly in Geneva in 2006, for instance, he outlined a holistic medicine that was, at one and the same time, traditional and postmodern, guided by intuition as much as by science, that not just cures physical disease but also succeeds in aligning the individual with society and nature.49 The oppositions he evoked – between the rationality of science and the intuitive knowledge of tradition, between mechanistic reductionism and organic holism, between body on the one hand and mind/spirit on the other, between East and West – and then proposed to overcome through integration directly point to San Francisco, to Esalen, and the ideas of culture developed in Germany by Herder and Humboldt in the course of the eighteenth century. The ultimate goal of ‘maximising potential’, meanwhile, resonates with the contemporary fusion of West Coast spirituality and capitalist business agendas also found in the more recent writings of Capra and others. Prince Charles, after all, is not just a romantic but also a businessman, and the second-highest representative of the nation that ushered in the Industrial Revolution and spearheaded the imperialist transformation of the world. Not surprisingly, his views converge with contemporary interpretations of holism and systems science in China, where, as we saw above, the management and control of systems have for some time been recognised as key political goals. As Slavoj Žižek puts it in his own

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inimitable style, ‘[I]f Max Weber were alive today, he would definitely write a second, supplementary, volume to his Protestant Ethic, entitled The Taoist Ethic and the Spirit of Global Capitalism.’50

The Third Genealogy: Entangling Holism and Systems Biology Systems biology is a young discipline that only emerged in the 1990s. Like Chinese medicine, it is a plural and heterogeneous ‘living tradition’51 that does not point to one single origin.52 It is multi-disciplinary, drawing on collaborative inputs from fields such as molecular biology, genomics, computer modelling, mathematics and information theory.53 At present, there exists little consensus among its practitioners about the definition of systems biology, whether the term is actually the best one to label what they do, and how the discipline should develop.54 Yet, almost all systems biologists define themselves against other ways of doing biology by emphasising their non-reductionist focus on complex systems and networks. Often they use the term ‘holistic’ as a label for specifying this difference.55 They tend to portray themselves as members of an avant-garde that is actively redefining the frontiers of biology, even as they share with their more reductionist colleagues a vision of making biological processes more predictable and open to controlled intervention.56 Systems biology became one of the fastest-growing fields of bioscience research in the first decades of the twenty-first century, strongly supported by governments in both Asia and the West. Such support is provided on the expectation that systems biology will deliver solutions to the complex medical problems of our age that are proving increasingly resistant to the existing ‘magic bullet’ approach of molecular biology. Systems biologists claim to deliver on this promise by creating a personalised medicine capable of deciphering the uniqueness of each human system.57 Chinese medicine, meanwhile, asserts that it has been a personalised medicine for thousands of years precisely because it understands itself today as fundamentally holistic in orientation. Systems biologists have thus become extremely interested in Chinese and similar types of traditional medicines and ethnopharmacologies as a practical resource for realising their goals.58 Chinese medicine physicians, on the other hand, turn to systems biology in the hope that it will ensure the future of their tradition.59 Indeed, as the title of one recent paper claims: ‘Ethnopharmacology and Systems Biology: A Perfect Holistic Match’.60 If one examines this paper more closely, though, or indeed the manner in which the matchmaking is being conducted, a number of contradictions quickly become apparent that cast a shadow on the perfect nature of this marriage. For Chinese medicine is courted only as long as it promises to render itself legible to the inscription devices and agendas that drive systems biology research. To understand these, we need to reach back once more to the interwar years, when the intellectual parents of systems biology, systems theory and cybernetics themselves emerged.61 General systems theory was brought to life single-handedly by the Austrian biologist and philosopher Ludwig von Bertalanffy (1901–72), a complex man who left

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an equally complex and still only partially explored œuvre. Throughout his life, von Bertalanffy attempted to overcome what he perceived to be the destructive tendencies of mechanistic and atomistic modernity by formulating an all-encompassing science that would accord with a humanistic perception of people as ‘open systems’ far from equilibrium, engaged in a constant process of growth and development. That is, von Bertalanffy attempted to realise the desire for unity characteristic of conservative humanistic holism through the progressive holism of a unified science of systems. Not surprisingly, he supported at least some aspects of fascist ideology and politics, which, of course, constitute but another attempt at accomplishing the same kind of fusion. Systems theory orders the world hierarchically into nested systems at higher and lower orders. This is one reason why it was attractive to von Bertalanffy, who openly despised the, in his eyes, superficial egalitarianism of the counter-culture movement.62 True enough, the members of this movement initially emphasised the romantic community-centred strand of holism’s heritage. Yet over time, as we saw above, they increasingly sought also to fuse it with scientific holism. Von Bertalanffy thus came to assert a tremendous influence on post-1960s ideologues of holistic medicine and science, who rarely questioned his wider beliefs and sympathies. A similarly complicated relationship also exists between cybernetics and the counter-culture movement. Deriving from the Greek word for steersman (kybernetes), cybernetics is a related field that seeks to understand, modify and direct the behaviour of systems at all levels of complexity. The origins of cybernetics are diffuse, involve many people, and are impossible to recount here in detail. Suffice to say that inasmuch as its proponents claimed to be providing a meta-theory for everything that cut across not only the human/machine distinction but also all existing disciplinary fields, cybernetics came to exert an extraordinary influence on the scientific imagination during its heyday between the 1950s and 1970s.63 That influence was transmitted to the counterculture movement through a range of people with a foot in both science and counterculture, including Buckminster Fuller, Gregory Bateson and R. D. Laing. Like general systems theory, cybernetics, therefore, has an official and a forgotten history, though with somewhat reversed connotations. The early cyberneticians discovered, much to their own surprise, that even relatively simple systems are capable of producing entirely novel and often unpredictable behaviours. However, rather than developing a performative engagement with this potentiality, as attempted most radically perhaps by R. D. Laing, the discipline as a whole has retreated towards a predominantly calculative focus on engineering and control.64 Systems biology has inherited this orientation. As we saw above, the overarching goal for most of its practitioners is the ‘calculation of life’: opening the human being in its totality to new forms of manipulation and control. Whether or not its practitioners see it as such, their multiple entanglements with state and industry firmly entangle them in the progressive advancement of the biopolitical regimes first outlined by Foucault, which have since become a core focus of understanding the organisation and functioning of advanced capitalist systems.65 Bringing Chinese medicine under the domain of such calculation requires its transformation from a practice centred in

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the final instance on artistry to one whose diagnostic categories and practices can be mapped, transformed into numbers and ultimately commodified.66 Imagined once as resistance against precisely this orientation to life, making Chinese medicine holistic in the final analysis ended up laying the groundwork for its assimilation into contemporary biopolitical regimes.

Holism and Chinese Medicine Revisited To understand these developments, we need to return, once more, to the reasons that engendered the emergence of holism in the first place: a lived awareness of the transformation of all areas of life brought about by the diffusion of modernity across the globe, a rupture that many people chose and still choose to resist. Marxist historians like György Lukács identified the core of this transformation as a process of objectification/commodification that renders the world into an assemblage of independent things that can be described, analysed, controlled, measured and, above all, exchanged for each other.67 In this view, the emergence of modern science, including that of systems biology, is not an accidental and unrelated event but an integral part of a complex and still ongoing process of transformation of the entire world.68 The holistic imagination constitutes a moment of resistance, but from the very beginning it was compromised by two fundamental flaws. Max Weber already realised that the conservative, backward-looking holism that tried to hold on to a more enchanted past was simply no match for the power unleashed by the forces of modernity. Holism as a science, on the other hand, is simply not an alternative at all, as explained by the Italian historian of science, Toni Tonietti, with specific reference to China.69 Tonietti argues that the successes of Western science, specifically since the scientific revolution, are predicated on attempting ‘to introduce order into that which changes, by fixing its static, eternal foundations’.70 Cybernetics and the systems sciences are but attempts to extend this desire for order to the understanding of things that resist capture by other means. Unlike other historians, who detect in Chinese medicine and culture the presence of systems theory avant la lettre, Tonietti understands that, prior to their encounter with modernity, the Chinese sciences were not, in fact, interested in universal laws. They were attracted to change, which they sought to understand by concepts like yin/yang or qi, concepts that are themselves unstable and completely relational. As Tonietti emphasises, precisely because they never sought to describe, analyse or regulate complexity, the Chinese sciences cannot be said to be holistic in its second (dialectical or scientific) sense.71 We may add that they were not holistic in the first (structural or cultural) sense either because their origins have nothing at all to do with modernity. If Tonietti is correct, then Qin Bowei or Fang Yaozhong’s attempts to assimilate holism to Chinese yin/yang thinking were fated to fail for the same reasons that Ai Siqi and Mao Zedong’s readings of Engels were overtaken by Deng Xiaoping’s pragmatic modernisations. Like the Weimar holists or the counter-cultural revolutionaries of the 1960s they underestimated the transformative power of capitalist modernity

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partly because they failed to grasp fully the contradictory tensions within the concept of holism itself. Hence, even as they read holism through tongbian philosophy, they introduced modern concerns for control into the very heart of their tradition, opening it up to become a medicine aimed at restoring balance and managing system states rather than one that ‘rides the qi’ of constant change.

Beyond Hybridity and Either/Or: Neither Donkey nor Horse72 My examination might well stop here. Something hitherto hidden or grasped merely in outline has been exposed more clearly. As a critical scholar, I could now step back and invite the clinicians, researchers and regulators involved to take note – or not. Or I can move beyond description and analysis towards a critique that involves the formulation of concrete practical alternatives. In the present case, this implies, at the very least, reflection on the possibilities for the existence of a Chinese medicine – or, indeed, any practice – that is both non-traditional and non-modern, that is of the present without being subsumed to its forces of equalisation and domination. To this end, I turn to the philologist, revolutionary and Chinese medicine scholar, Zhang Taiyan 章 太炎 (1869 -1936). Zhang Taiyan is widely known for his pivotal role in the 1911 revolution that overthrew the Qing dynasty and established the Chinese Republic.73 His accomplishments, though, go far beyond politics, encompassing pivotal contributions to modern Chinese philosophy, language, philology and medicine. Risking injustice to such a multi-faceted person, I shall view Zhang Taiyan’s life-work, nevertheless, as centred on a single question: what, about traditional Chinese culture, is worth preserving in the modern world, and how? In that sense, he sought to find a solution to the same problem that concerned the advocates of holism active during his lifetime. His own solution, though, was utterly different and far more radical. Zhang’s struggle to resist modernity was informed by three key assumptions. Firstly, he grasped that the modern world is a given that cannot be imagined away through retreat into the past. Indeed, if the imperialist expansion of the Western powers into China taught Zhang anything, then it was that China’s traditional institutions had failed. Yet, and this is Zhang’s second insight, the apparent universalism underpinning concepts such as science, democracy, evolution, history, time – and one may add holism and systems to this list – hides their true nature as ideological tools that facilitate the global expansion of modernity and capitalism. This expansion transforms the West as much as it does the rest of the world. Thus, it cannot be grasped through an opposition of cultural essences, of the West vis-à-vis China/Asia. Thinking a different future than that enacted by modernity and the capitalist mode of production requires us to think outside both the discourses offered by traditional interpretations of Chinese history and modern universalism. Yet, these discourses are also the only places from where such thinking can begin. Zhang Taiyan was a truly interdisciplinary scholar who drew on Indian Yogacara Buddhism, Chinese Daoism, and writers in the German idealist tradition from Hegel to

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Nietzsche. His goal was to present a radical critique of the hegemonic value judgements embodied in both the dominant Chinese tradition, with its track record of oppression enacted through the rewriting of history, and that of modernist universalism in all its imperialist destructivity. Focusing on his philosophical and political writings, biographers like Viren Murty unfortunately interpret Zhang’s efforts as ultimately leading him into a nihilist cul-de-sac,74 for what he apparently advocates is the pursuit of an embodied transcendence that negates the world, time and history altogether but leaves little scope for concrete political action. However, if we take into account Zhang Taiyan’s life-long involvement with Chinese medicine, his critique acquires a much more positive dimension. Zhang stemmed from a family of physicians, studied medicine from an early age, and published extensively on medical topics. He deployed his philological expertise and knowledge of history to make innovative contributions to long-standing disputes within the tradition, practised on friends and family, and had distinctive views about how Chinese medicine should respond to the challenge of Western science. Virtually all of the important modernisers of Chinese medicine during the 1920s and 1930s were his students, and during the last period of his life he served as president of a Chinese medical college in Suzhou.75 Yet, Zhang’s deep immersion into the world and life of Chinese medicine is virtually ignored by his biographers and by historians of modern China, perhaps out of fear of tainting their revolutionary hero by association with tradition and the past. If such preconceptions can be put aside, then Zhang Taiyan’s support of Chinese medicine emerges precisely as a form of practical resistance to both conventional traditionalism and the scientific universalism imposed by the imperialist powers. This distinguishes Zhang’s critique from that afforded by holism, which, as we have seen, aligns itself with tradition against modernity even as it also seeks to outdo reductionist science in the construction of the modern. It thereby overcomes the fatal flaws of holistic medicine that are so starkly exposed by its ultimate assimilation into contemporary biopolitics. It is all the more powerful because it does not rely on categories and modes of thought borrowed from the West even as it engages with them. This allowed Zhang to address simple, practical problems such as reconstituting the precise meaning of ancient medical terms, or accurately translating historical measurements into contemporary ones. He taught his students to employ Hetuvidyā, a system of Buddhist logic, which he considered superior to Western logic, as a tool for subjecting knowledge claims to critical examination. He rejected some of the most fundamental aspects of Chinese medical doctrine, such as the five phases, as speculative mysticism and emphasised the grounding of medical practice in empirical observation. If certain ways of practising Chinese medicine produced reliable results where the Western medicine of its time or, indeed, other currents of the tradition did not, this helped in deciding what was worth taking seriously and what was not. Yet, what was worth taking seriously had then to be seriously engaged with. It had to be mastered on its own terms. It was open to change but not for the sake of change alone. It had to be respected, transmitted and practised within newly developed institutional frameworks.

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As in so many other areas of his life, Zhang Taiyan thus stood between radical modernisers like his students Lu Xun 魯迅 or Yu Yunxiu 余雲岫, who rejected all of Chinese medicine on purely ideological grounds, and traditionalists, who perceived of Chinese medicine as an inviolable totality that, if it had to be modernised, had to be modernised in toto. Zhang’s influence on Chinese medicine is visible in the work of students like Yun Tieqiao 運鐵鍬, Lu Yuanlei 陸淵雷 and Zhang Cigong 章次公, frequently portrayed within the Chinese medical community as misguided modernisers who were ‘neither donkey nor horse’ (非驢非馬 fei lü fei ma).76 It is surely no coincidence that the influence of this cohort diminished at precisely that historical moment when Qin Bowei and Fang Yaozhong attached holism to the very heart of Chinese medicine.

Conclusion As a Buddhist intellectual, Zhang Taiyan employed the notion of karma as a tool for understanding historical process independent of the ideologies of progress and linear time that the West was then imposing on China. In this view, history is produced by the activity of karmic seeds (業種 bijia). These seeds are brought to fruition through action, producing karmic fruits (業果 vipaka), which in turn become seeds for new fruits and so on. Existence is perfumed by these seeds, which produce habits that have karmic consequences. This karmic cycle or samsara (輪迴 lunhui) can only be broken by bringing into awareness and then transcending the conditioning brought forth by the karmic seeds. Viewed from this perspective, the convergence of the three genealogies I have presented on to a common endpoint is not accidental or inevitable. Neither is the whiff of totalitarianism that so persistently attaches to holism, systems, cybernetics and their efforts at calculating life. They arise from the unrecognised and unresolved tensions that attach to holistic ideologies. Expressing disenchantment with modernity and a yearning for difference, they also seek to gain the upper hand on reductionist science by reducing life to the logic of systems. Bringing these tensions and their enduring effects into consciousness is a necessary step towards overcoming them. The genealogical approach I have employed in this chapter is one possible method for accomplishing this. A space is thereby opened up for different types of action, the production of different seeds, and different fruits. A nihilistic reading of Zhang’s philosophy rests on the perception that he advocated stepping out of samsara in order to stop all cycles of cause and effect. His involvement with Chinese medicine suggests another possibility: namely, the piecemeal adjustment of traditional practice to changed contexts of life in the light of critique. This effort was aimed at generating not hybridity but something that is neither traditional nor modern. It is practised resistance, but unlike that driven by totalitarian ideologies – and holism ultimately is one such ideology, points to Zhang’s fundamental insight ‘that transforming our world involves a transformation of both subjectivity and objectivity’.77

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The continued presence of non-modern practices like Chinese medicine in the modern world invariably brings us face to face with precisely the questions that Zhang Taiyan sought to resolve. They have not yet been rendered obsolete as tradition, nor have they been completely assimilated to the modern. It is therein that their value lies. The interdisciplinary orientation and openness to constant redefinition the medical humanities claim for themselves make it an ideal space in which critique of the kind inspired by Zhang Taiyan or Max Horkheimer may be enacted. The possibility for doing so, however, depends on the discipline’s willingness to engage critically with its own karmic seeds and their fruits. If the medical humanities truly intend to become a space for critique rather than mere criticism, its practitioners will need to find ways of moving beyond the modern constitution that defines and constrains them, not least through their one-sided attachment to biomedicine. The present chapter argues that opening ourselves up to non-modern medical traditions, not as objects of inquiry but as resources for thinking critically about the fundamental issues of our time, presents an opportunity for doing precisely that.

Acknowledgements I would like to thank the Wellcome Trust for supporting my research through a Senior Research Fellowship in the Medical Humanities. Judith Farquhar, Dan Bensky and Sue Cochrane provided important feedback on earlier drafts of this chapter. I am grateful to Anne Whitehead and Angela Woods for allowing me to develop the ideas presented here and for their editorial advice and support throughout.

Further Reading Bridie Andrews, The Making of Modern Chinese Medicine, 1850–1960 (Vancouver: UBC Press, 2014). Sean Hsiang-lin Lei, Neither Donkey nor Horse (Chicago: University of Chicago Press, 2014). Karl Mannheim, Konservatismus (Frankfurt am Main: Suhrkamp, 1984). Viren Murthy, The Political Philosophy of Zhang Taiyan (Leiden: Brill, 2011). Denis Noble, The Music of Life (Oxford: Oxford University Press, 2006). Andrew Pickering, The Cybernetic Brain (Chicago: University of Chicago Press, 2010). Volker Scheid, Chinese Medicine in Contemporary China: Plurality and Synthesis (Durham, NC: Duke University Press, 2002). Volker Scheid, Currents of Tradition in Chinese Medicine, 1626–2006 (Seattle: Eastland Press, 2007).

Notes 1. Victoria Bates, Alan Bleakley and Sam Goodman, Medicine, Health and the Arts (London: Routledge, 2013); Angela Woods, ‘Medicine, Health and the Arts: Approaches to the Medical Humanities’, Medical Humanities, 9 June 2014 (accessed 31 May 2015). 2. Max Horkheimer, Critical Theory (New York: Seabury Press, 1982).

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3. Vincent Di Stefano, Holism and Complementary Medicine (Crows Nest: Allen & Unwin, 2006); Assaf Givati, ‘The Holistic Discourse and Formalising Education of Non-Medically Qualified Acupuncturists and Homeopaths in England,’ Medical Sociology Online (2012) (accessed 31 May 2015). 4. Michael Baum, ‘Concepts of Holism in Orthodox and Alternative Medicine’, Clinical Medicine 10.1 (2010), pp. 37–40. 5. Assaf Givati, ‘Performing “Pragmatic Holism”: Professionalisation and the Holistic Discourse of Non-Medically Qualified Acupuncturists and Homeopaths in the United Kingdom’, Health 19.1 (2014), pp. 34–50. 6. Christopher Lawrence and George Weisz, Greater Than the Parts (Oxford: Oxford University Press, 1998). 7. Jerry Fodor, Holism (New York: Wiley, 1992); Marcel Weber and Michael Esfeld, ‘Holism in the Sciences’, Encyclopedia of Life Support Systems Publishers, 2003 (accessed 20 August 2014). 8. These were first traced in their full inter-relationships by Karl Mannheim in his habilitation, later published as Konservatismus (Frankfurt am Main: Suhrkamp, 1984). 9. Friedrich Engels, Dialectics of Nature (Moscow: Progress, 1972); Peter Manicas, ‘Engels’ Philosophy of Science’, in Manfred B. Steger and Terrell Carver (eds), Engels After Marx (College Park: University of Pennsylvania Press, 2000). 10. David E. Cooper, ‘Verstehen, Holism and Fascism’, Royal Institute of Philosophy Supplement 41 (1996), pp. 95–107. 11. Manicas, ‘Engels’ Philosophy of Science’. 12. Max Weber, ‘Science as a Vocation’, in From Max Weber: Essays in Sociology (Oxford: Oxford University Press, 1946), pp. 129–56. 13. Weber and Esfeld, ‘Holism in the Sciences’. 14. Jan C. Smuts, Holism and Evolution (Whitefish: Literary Licensing, 2013). 15. Anne Harrington, Reenchanted Science: Holism in German Culture from Wilhelm II to Hitler (Princeton: Princeton University Press, 1996). 16. Lawrence and Weisz, Greater Than the Parts. 17. Chenshan Tian, ‘Tongbian in the Chinese Reading of Dialectical Materialism’, Philosophy East and West 52.1 (2002), pp. 126–44. 18. Chenshan Tian, ‘Tongbian: A Chinese Strand of Thought’, Journal of Chinese Philosophy 27.4 (2000), pp. 441–68. 19. Chenshan Tian, Bianzhengfa: A Chinese Representation of Marxian Dialectics (Honolulu: University of Hawai’i Press, 1999). 20. Tian, ‘Tongbian: A Chinese Strand of Thought’. 21. Bridie Andrews, The Making of Modern Chinese Medicine, 1850-1960 (Vancouver: UBC Press, 2014); Sean Hsiang-lin Lei, Neither Donkey nor Horse (Chicago: University of Chicago Press, 2014); Volker Scheid, Chinese Medicine in Contemporary China (Durham, NC: Duke University Press, 2002); and Kim Taylor, Medicine of Revolution: Chinese Medicine in Early Communist China (1945–1963) (Cambridge: University of Cambridge Press, 2000). 22. Zhang Xuyou 張繼有, ‘Zhuyao miaonixi jihuan zhiliaofa’ 主要泌尿係疾患的中醫療法 (‘Essential Chinese Medicine Treatment of Patients Suffering from Diseases of the Urinary System’), Midlevel Medicine 中級醫刊 12 (1955); Qin Bowei 秦伯未, ‘Zhongyi lilun zhong de yinyang guandian’ 中醫理論中的陰陽觀點 (‘The Yinyang Perspective within Chinese Medicine’), Shanghai Journal of Chinese Medicine上海中醫藥雜志 3 (1955). 23. Scheid, Chinese Medicine in Contemporary China; Taylor, Medicine of Revolution.

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24. Qin Bowei 秦 伯 未, Zhongyi rumen 中醫入門 (Introduction to Chinese Medicine), (Beijing: Renmin weisheng chubanshe, 1959). 25. Tian, ‘Tongbian’, p. 136. 26. François Jullien, The Propensity of Things (New York: Zone Books, 1999). 27. Jie Wu, Systems Dialectics (Beijing: Foreign Language Press, 1996). 28. Ibid., p. 11. 29. Ibid., pp. 6–9, 21. 30. Ibid., pp. 75–90, 335–44, 355–9. 31. Lü Bingkui 呂炳奎, ‘Duidang qian zhongyi gongzuo zhong jige wenti de kanfa’ 對當前 中醫工作中幾個問題看法 (‘A Perspective on Several Problems Facing Chinese Medicine Work’), Shanghai Journal of Chinese Medicine 上海中醫藥雜誌 4.1 (1981). 32. Liu Changlin 劉長林, Neijing de zhexue he zhongyixue de fangfa 內經的哲學和中醫學 的方法 (The Philosophy of the Inner Canon and the Methodology of Chinese Medicine) (Beijing: Science Press, 1985). 33. Hua Guofan 華國凡 and Jin Guantao 金觀濤, ‘Zhongyi: kexueshang de yige qiji’ 中醫：科學 上的一個奇蹟 (‘Chinese Medicine: A Miracle in Science’), Natural Dialectics News 2 (1979), p. 20. 34. Wang Qi 王琦, ‘Ershiyi shiji – zhongyiyao de shiji’ 二十一世紀 — 中醫藥的世紀 (‘The 21st Century: The Century of Chinese Medicine’), Traditional Culture and Modernisation 傳統 文化與現代化 2 (1995), pp. 64–7. 35. Zhu Shina 祝世納, Zhongyixue fangfalun yanjiu 中醫學方法論研究 (Chinese Medicine Methodology Research) (Jinan: Shandong Science and Technology Press, 1985), p. 3. See also Zhu Shina 祝世納 and Sun Guilian 孫桂蓮, Zhongyi xitung lun 中醫系統論 (On Chinese Medicine Systems) (Chongqing: Chongqing Press, 1990). 36. Linda L. Barnes, Needles, Herbs, Gods, and Ghosts (Cambridge, MA: Harvard University Press, 2009). 37. Lucia Candelise, ‘La Médecine chinoise dans la pratique médicale en France et en Italie, de 1930 à nos jours: représentation, réception, tentatives d’intégration’, PhD dissertation, Department of History, École des Hautes Études en Sciences Sociales (EHESS), Paris, and Università degli Studi di Milano Bicocca (2008); Johan Nguyen, La Réception de l’acupuncture en France (Paris: Editions L’Harmattan, 2012). 38. J. H. F. Otto, ‘Über die Ganzheitsbetrachtung in der Chinesischen Heilkunst’, Ärztliche Wochenschrift 6.8 (1951). 39. Richard Wilhelm, I Ging: Text und Materialien, 5th edn (Düsseldorf: Eugen Diederichs Verlag, 1980), p. 21. 40. Joseph Needham, Science and Civilisation in China. Vol. 2: History of Scientific Thought (Cambridge: Cambridge University Press, 1956), p. 291. 41. Ibid., p. 292. 42. Carl Gustav Jung, ‘Foreword’, in Richard Wilhelm (ed.), I Ching (Princeton: Princeton University Press, 1950). 43. For a history of the AAAS, see the Academy’s website at (accessed 31 May 2015). 44. David Pouvreau, The Dialectical Tragedy of the Concept of Wholeness (Litchfield Park: Isce Publications, 2009). 45. For a more detailed history of the Esalen Institute, see Linda Sargent Wood, A More Perfect Union: Holistic Worldviews and the Transformation of American Culture After World War II (Oxford: Oxford University Press, 2010).

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46. I take the term ‘West Coast renaissance‘ from Alan Watts. See (accessed 31 May 2015). 47. Fritjof Capra, The Turning Point (New York: Bantam, 1983); Fritjof Capra and Pier Luigi Luisi, The Systems View of Life (Cambridge: Cambridge University Press, 2014). 48. Capra, The Turning Point; Fritjof Capra, Uncommon Wisdom (New York: Bantam, 1989). 49. (accessed 31 May 2015). 50. Slavoj Žižek, ‘From Western Marxism to Western Buddhism’, Cabinet 2 (2001) (accessed 18 September 2014). 51. Volker Scheid, Currents of Tradition in Chinese Medicine, 1626–2006 (Durham, NC: Duke University Press, 2007). 52. Alexander Powell, Maureen A. O’Malley, Staffan Müller-Wille, Jane Calvert and John Dupré, ‘Disciplinary Baptisms: A Comparison of the Naming Stories of Genetics, Molecular Biology, Genomics, and Systems Biology’, History and Philosophy of the Life Sciences 29.1 (2007), pp. 5–32. 53. Marc W. Kirschner, ‘The Meaning of Systems Biology’, Cell 121 (2005), pp. 503–4; Fulvio Mazzocchi, ‘Complexity and the Reductionism-Holism Debate in Systems Biology’, Wiley Interdisciplinary Reviews. Systems Biology and Medicine 4.5 (2012), pp. 413–27. 54. Jane Calvert and Joan H. Fujimura, ‘Calculating Life? A Sociological Perspective on Systems Biology’, EMBO Reports 10 (2009), pp. 46–9. 55. Iris R. Bell and Mary Koithan, ‘Models for the Study of Whole Systems’, Integrated Cancer Therapy 5.4 (2006), pp. 293–307; Calvert and Fujimura, ‘Calculating Life?’; Jan van der Greef, Herman van Wietmarschen, Jan Schroën, Mei Wang, Thomas Hankemeier and Guowang Xu, ‘Systems Biology-based Diagnostic Principles as Pillars of the Bridge between Chinese and Western Medicine’, Planta Medica 76.17 (2010), pp. 2036–47; Mei Wang, Robert-Jan A. N. Lamers, Henrie A. A. J. Korthout, Joop H. J. van Nesselrooij, Renger F. Witkamp, Rob vander Heijden, Peter J. Voshoi, Louis M. Havekes, Rob Verpoorte and Jan van der Greef, ‘Metabolomics in the Context of Systems Biology: Bridging Traditional Chinese Medicine and Molecular Pharmacology’, Phytotherapy Research 19.3 (2005), pp.173–82; and Xijun Wang, Aihua Zhang and Hui Sun, ‘Future Perspectives of Chinese Medical Formulae: Chinmedomics as an Effector’, Omics 16.7 (2012), pp. 414–21. 56. Jane Calvert, ‘The Commodification of Emergence: Systems Biology, Synthetic Biology and Intellectual Property’, BioSocieties 3.4 (2008), pp. 383–98; Calvert and Fujimura, ‘Calculating Life?’ 57. Alessandro Buriani, Maria L. Garcia-Bermejo, Enrica Bosisio, Qihe Xu, Huige Li, Xuebin Dong, Monique S. J. Simmonds, Maria Carrara, Noelia Tejedor, Javier Lucio-Cazana and Peter J. Hylands, ‘Omic Techniques in Systems Biology Approaches to Traditional Chinese Medicine Research: Present and Future’, Journal of Ethnopharmacology 140.3 (2012), pp. 535–44; and Rui Chen and Michael Snyder, ‘Systems Biology: Personalized Medicine for the Future?’, Current Opinions in Pharmacology 12 (2012), pp. 623–8. 58. Buriani et al., ‘Omic Techniques in Systems Biology’; Halil Uzuner, Rudolf Bauer, Tai-Ping Fan, De-an Guo, Alberto Dias, Hani El-Nezami, Thomas Efferth, Elizabeth M. Williamson, Michael Heinrich, Nicola Robinson, Peter J. Hylands, Bruce M. Hendry, Yung-Chi Cheng and Qihe Xu, ‘Traditional Chinese Medicine Research in the Post-Genomic Era: Good Practice, Priorities, Challenges and Opportunities’, Journal of Ethnopharmacology 140.3 (2012), pp. 458–68; van der Greef et al., ‘Systems Biology-based Diagnostic Principles’.

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59. Volker Scheid, ‘Convergent Lines of Descent: Symptoms, Patterns, Constellations, and the Emergent Interface of Systems Biology and Chinese Medicine’, East Asian Science, Technology and Society 8.1 (2014), pp. 107–39. 60. Robert Verpoorte, Young Hae Choi and Hye Kyong Kim, ‘Ethnopharmacology and Systems Biology: A Perfect Holistic Match’, Journal of Ethnopharmacology 100.1 (2005), pp. 53–6. 61. Rudolf Seising, ‘Cybernetics, System(S) Theory, Information Theory and Fuzzy Sets and Systems in the 1950s and 1960s’, Information Sciences 180.23 (2010), pp. 4459–76; Olaf Wolkenhauer, ‘Systems Biology: The Reincarnation of Systems Theory Applied in Biology?’, Briefings in Bioinformatics 2.3 (2001), pp. 258–70. 62. Pouvreau, The Dialectical Tragedy. 63. Geoffrey C. Bowker, Memory Practices in the Sciences (Cambridge, MA: MIT Press, 2008), pp. 75–105. 64. Andrew Pickering, The Cybernetic Brain (Chicago: University of Chicago Press, 2010). 65. Michel Foucault, Society Must Be Defended: Lectures at the Collège de France, 1975–1976 (New York: St Martin’s Press, 1997), p. 242. 66. Calvert, ‘The Commodification of Emergence’; Scheid, ‘Convergent Lines of Descent’. 67. György Lukács, History and Class Consciousness (Cambridge, MA: MIT Press, 1971). 68. Calvert, ‘The Commodification of Emergence’. 69. Toni Tonietti, ‘Towards a History of Complexity: A Comparison between Europe and China’, in Vieri Benci, Paola Cerrai, Paolo Freguglia, Giorgio Israel and Claudio Pellegrini (eds), Determinism, Holism, and Complexity (New York: Springer, 2003), pp. 387–401. 70. Ibid., p. 387. 71. Ibid., p. 395. 72. The title of this section is a reference to Sean Hsiang-Lin Lei’s authoritative study of the modernisation of Chinese medicine during the Republican period. I am indebted to Sean for his valuable insights into this process, communicated to me in many personal conversations as well as his publications. 73. Shimada Kenji, Pioneer of the Chinese Revolution: Zhang Binglin and Confucianism, trans. Joshua A. Fogel (Stanford: Stanford University Press, 1990); Kauko Laitinen, Chinese Nationalism in the Late Qing Dynasty: Zhang Binglin as an Anti-Manchu Propagandist (London: Curzon, 1990); and Viren Murthy, The Political Philosophy of Zhang Taiyan (Leiden: Brill, 2011). 74. Viren Murthy, The Political Philosophy of Zhang Taiyan. 75. Hu Yue 鬍樾, ‘Zhonggui gexin daoshi Zhang Taiyan’ 國醫革新導師章太炎 (‘Zhang Taiyan: Leader of National Medical Reform’), Chinese Journal of Medical History 中華醫史雜志 4 (1995); Chen Yu 陳瑜 and Xu Jingsheng 許敬生, ‘Qianlun Zhang Taiyan dui zhongyi wenxianxue zhi gongxian’ 簡論章太炎對中醫文獻學之貢獻 (‘A Synopsis of Zhang Taiyan’s Contribution to Chinese Medicine’s Literary Culture’), Journal of Chinese Medicine Literary Culture 中醫文獻雜志 3 (2005); Duan Xiaohua 段曉華 and Chang Gongyi 暢洪昇, ‘Zhang Taiyan yixue yanjiu lichen jianche’ 章太炎醫學研究歷程簡析 (‘A Brief Analysis of the Development of Zhang Taiyan’s Medical Research’), Journal of the Jiangxi College of Chinese Medicine 江西中醫學院學報 6 (2008). 76. Lei, Neither Donkey nor Horse. 77. Murthy, The Political Philosophy of Zhang Taiyan.

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4 THE LIVED GENOME Christoph Rehmann-Sutter and Dana Mahr

Introduction rom a medical perspective, the genome can today be used primarily as a source of health information for diagnoses and prospective disease risk management. Gene therapy may be an option in the future. For scientists, the genome is the sum of an organism’s DNA molecules, which can be sequenced and used to explain heredity and development. What is a genome for those who have it in their bodies and who live it? How do they make sense of it? What meanings are associated with the genome in their lifeworlds, where identities are formed and decisions taken in personal, family and cultural contexts? It is a matter of perspectives. We all live a genome, but the questions that arise from people who live a genome are different from those raised by doctors and scientists who look at the genome as a functional part of cells. From the perspective of their own embodiment, people act as interpreters of their own ‘lived’ genome, of both its knowns and its unknowns. Studying these acts of interpretation is an emerging area within the interdisciplinary field of medical humanities, combining qualitative research approaches, empirical ethics, philosophy and cultural studies. Lay people are considered experts in their lifeworlds and they are ‘moral pioneers’, as anthropologist Rayna Rapp1 has put it in her study of the moral dilemmas of prenatal testing. In a broader sense, they are pioneers of sense-making in the course of a geneticisation of body knowledge. We can specify two levels of questions that need to be raised in studies of the lived genome. The first of these relates to how information about genes and mutations affects the self and the identity of individuals and families: for instance, those with monogenic conditions such as hereditary cancer risks, Huntington’s disease or cystic fibrosis. How do people communicate genetic risks to each other? How do they decide whether or not to know their genetic status? How do they narrate predictive genetics in regard to a specific condition?2 How do they individualise the probabilities? The second level is the framework of more general genomic information, which is developed in genomic medicine and biology. This provides background concepts for interpreting what becomes accessible individually through personal genome scans based on single nucleotide polymorphisms (SNP),3 or whole-genome sequencing. The complex functions of the genome are investigated by molecular biology and genetic medicine. It is a part of our bodies – a part of which humans were ignorant

F

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before the advent of modern genetics. Being invisible and insensible (other than arms, legs or muscles), the genome is not part of what phenomenologists have described as the body schema, through which we know about the relative position of each of our limbs.4 But nevertheless it is creatively imagined and integrated into a culturally and individually negotiated and narrated corporeal identity, within diverse local accounts of intersubjective relatedness. According to the distinction between body schema and body image discussed by Shaun Gallagher,5 the genome can, however, be part of the body image, which is a conscious representation of the body. As such it is part of the knowledge resources in the lifeworld. By systematically exploring the lifeworld from a first-person perspective of those living and shaping it, and by focusing on practices of personal meaning-making, phenomenology and qualitative research, we can approach the question of what a genome is by asking: What does it mean to live as somebody with this genome? In the first section of this chapter we introduce a theoretical perspective by distinguishing between two perspectives on the genome, the ‘biomedical genome’ and the ‘lived genome’. We also introduce the way in which we are mobilising the concept of the ‘lifeworld’ in the context of our research. The genome is something peculiar if conceived from a first-person perspective. Those living a genome do not only have it and obtain the information about the body they are, but also they do many things in order to make sense of their genome. Interpretative work is being done in social and practical contexts; we propose speaking of ‘reflexive embodiment’. Reflexive embodiment is an active process, rather than something in which people are just ‘affected’ by the implications of genomics. The second section is dedicated to the guiding questions and methods for investigating this lived genome and the social epistemology of genomics. In our final section we discuss examples from a study on Crohn’s disease and ulcerative colitis, both inflammatory bowel diseases. These conditions were selected because, while they have been treated as paradigmatic ‘psychosomatic’ diseases, genetic factors have recently been found to be involved and these findings are currently transforming the medical understanding of the disease aetiology. The ‘geneticisation’ of these diseases can be observed in real time, affecting both medical practice and disease experience.

Two ‘Genomes’ Actively and passively, more and more people are taking part in cultures of genetic knowledge.6 On many levels, they are immersed and involved in communication about genetics. People in industrialised countries are increasingly encouraged to make decisions about predictive or diagnostic genetic tests when starting a family; before,7 during and after pregnancy; and before, during and after illness. Medicalisation is followed by geneticisation. Foetal DNA can now be tested non-invasively and with minimal risk to the pregnancy through a few drops of mother’s blood, with the result that more pregnancies may be turned into ‘risk pregnancies’.8 More and more tests are included in newborn screening. The cost of a complete personal genome sequence has been

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tumbling; currently, it has fallen below the magic sum of USD 1000. Large biobanks and information repositories have been established, such as the UK Biobank, which holds data on more than half a million patients, or the 100,000 Genomes Project, constituting unique research infrastructures. The media provide ample (selective and always interpreted) information about the latest breakthroughs in genomic research. Increasingly large parts of whole patient populations are transformed into genomic study samples followed by systems medicine (see also William Viney’s chapter in this volume).9 The omnipresence of available genetic knowledge has changed the cultural ‘frames’ for disease, health and responsibility, and new private and public duties seem to emerge: a possible duty of the individual to know his or her own genes10 and a possible duty of healthcare professionals to tell people about their genetic risks.11 Much has been written about potential changes in self-image, body schema, and the possible implications of genetic risks for individual visions of future life.12 Now new, further questions concern the meanings of genomic knowledge for those who have to deal with it and integrate it, transform and translate it into their everyday lives. We need a better understanding, as Barbara Prainsack and Jenny Reardon have put it, of how whole-genome information is used by, and what it means to, a wide range of users. . . . An understanding of what a broader range of users hope to learn from this type of whole-genome information, and whether it would lead to actual life and behaviour changes, would help in assessing whether personal genomics services are likely to be adopted in large numbers.13 This knowledge about the users’ and non-users’ hopes, fears and subjective understandings with regard to genetic knowledge must be based on an adequate kind of evidence. Such evidence would be needed for planning the good governance of genomics. Questions such as: ‘What does my genetic make-up mean for myself and for my family?’ or: ‘In what sense “am I my genes”?’14 should therefore be occasions not only for theoretical speculation but also for empirical research, applying qualitative, hermeneutic and phenomenological methodologies. We need to study the ongoing ‘reflexive embodiment’15 of genetic knowledge. In the first place, we need a theoretical framework that can integrate these processes of individual translation and management of genetic information and its integration into personal lives. By explaining the genome as something that is not only investigated and used in biomedical contexts but also ‘lived’ individually, in families and in societies, we hope to contribute to such a framework. The reflexively embodied genome is thus charged with basically two sets of meanings that both differ and interact. One is the set of meanings that are attached to the genetic in biomedical research and in clinical contexts. For the sake of simplicity, we call this perspective, and what is seen in it, ‘genome 1’. The genome, however, is translated and transformed into a related but dramatically different figuration that we call here ‘genome 2’, which is the genome seen within the lifeworlds of the individuals concerned.

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Scientists who are socialised into the frames of genome 1 may think that their genome is the only true one, while the people’s view of the genome is just a subjective translation. They may find many elements of genome 2 (in lay people’s understandings) imprecise, even incorrect. Their view of ‘reality’ is the sober world of mathematical models, of physics and chemistry, and of the complex charts of cellular systems with which they work. However, some users of genomic knowledge (other than scientists and healthcare professionals, who may themselves be personal users of genomic information) may equally well find genome 1 too abstract and lacking clear sense for the practical decisions they need to make. We do not think that either genome 1 or genome 2 is necessarily simpler but rather that they are related to different complexities. Similarly, we do not think that either genome 1 or genome 2 is wrong or biased, but that they have different truth criteria. Furthermore, genome 1 is not only the raw material for a simplification, or application into genome 2. Both are valuable, and their inter-relation is interesting to study. Both are concrete for people, and both are in some way necessary; however, they carry different phenomenological features of concreteness. The process of reflexive embodiment can hence be seen as an activity of mutual translations between different meaning contexts. A linear ‘deficit’ model of the popularisation of scientific knowledge from medical experts to patients, which had been assumed for decades, has become largely obsolete within Science and Technology Studies.16 It is certainly not helpful for elucidating the process of reflexive embodiment of genetic knowledge. Both sides have advantages and deficits, and both sides need to tell each other what they know and how they know it, how their knowledge produces evidence. A deficit model does not allow the user perspective to be taken as seriously as the provider perspective, since users are considered to be at the receiving end of the communication cascades. We prefer a model that assumes active contributions from both sides. The terminological symmetry between ‘genome 1’ and ‘genome 2’ should signify this. Meaning-making in the field of genetics and genomics is a joint enterprise between producers and users of genetic knowledge, between science and society. The meanings on the two sides, however intertwined, differ considerably – and sometimes they clash. In the course of research and also in clinical practice, situations are currently emerging where people typically need to decide about seeing large parts of their own genomic information. Genetic counselling normally deals with the complexities of genetic information about individual diseases or impairments. Decisions now need to be taken about knowing a whole genome, an exome, or a wide range of SNPs. The people concerned cannot know about all the conditions about which they will potentially acquire predictive information; too-long lists of diseases may potentially be included. Such situations seriously challenge the capacity for voluntary decisionmaking about the disclosure of information. This is not unique but intrinsically related to whole-genome studies: too many heterogeneous possibilities that are virtually impossible to grasp, and therefore an impossible mission for genetic counselling. The meaning of potential knowledge (in both the genome 1 and 2 perspectives) is

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tightly bound to the concrete conditions. Genetic risks for breast cancer pose different questions for decision-making than the risk for macular degeneration or for Alzheimer’s.17 The whole genome, as an object for informed decision-making about comprehensive disclosure, is therefore a moral conundrum. Decisions are virtually impossible to take ‘consciously’, in the classical sense of properly understanding all relevant implications of a decision.18 In order to make better-informed decisions, ideally, decision-makers would need to understand the lifeworld meaning of the genetics of each of the conditions potentially covered by testing. If somebody is uneasy about an a priori decision, desires to be as informed as possible about all risks to health, and asks for more detailed knowledge, then this would need to include both genome 1 and 2 perspectives on all conditions possibly involved. While genome 1 is actually studied condition by condition – this is the aim of all big research programmes in current systems medicine, genome 2 knowledge is not yet gathered systematically. A similarly progressive condition-by-condition analysis also of genome 2 would be needed. Reflexive embodiment is a basic human capability, connecting the individual and the social. As social philosophers Margaret Archer and Nick Crossley explain, it is undertaken through dialogues, internal conversations and conversations with others.19 The individual person is always woven into social contexts and their self-image can be perpetually reconfigured. The question of what we ‘embody’ is in the foreground here. The body has inherited older key terms of existence. Issues of genetics are issues of corporeality.20 We can ask: How and on what levels do we internalise, process and reflect the highly complex and partially uncertain knowledge about our own genome when it is disclosed to us (and potentially to others) and interpreted by geneticists? How do we translate their interpretations into our own identities, into lifeworlds, when we, as culturally and socially embedded people, are confronted, so to speak, with our biochemical self? A special feature of genomic knowledge is that it is about our bodies and our selves. By definition, it has anthropological significance,21 but this significance is not explicitly contained in the content of biomedical information. In order to understand this anthropological significance, we need to explore and ‘decode’ genome 2 as well. The first human genome sequence was completed by 2003 and, perhaps paradoxically, during the same historical period the biological role of the genome was contested and reinterpreted. The semantic transformations that took place for genome 1 are also important for genome 2. To give a brief background, the old conception of the genome as a ‘genetic program’ was devised by eminent biologists around 1960,22 long before research in developmental molecular genetics had begun and details of the developmental functioning of genes were discovered. However, in the context of systems biology, the genetic program view has lost its theoretical plausibility, while still being socially active in the context of the genome 2. It has now been replaced or complemented by a family of less gene-centric, deterministic and essentialist images, such as a molecular orchestra of the cell, whose music (the life of the cell) is produced by an interplay of diverse components, of which the genome is one part; or

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a library, whose actualised information content depends on those who use it by checking out and creatively reading a selection of books.23 Hence, the biomedical significance of the genome, while being significantly expanded, is also undergoing critical transformation. We suggest using and developing ‘genome 1’ – the biomedical genome – and ‘genome 2’ – the lived genome – analytically, as two hermeneutic perspectives. They represent two different but inter-related interpretative contexts of the genome, and at the same time two different levels of interpretation. Genome 2 is seen in lifeworld contexts by those who know the biopsychosocial implications of genetic susceptibilities and diseases at first hand: that is, by people ‘living’ a condition, having had or not having had a test, being directly involved as a patient or indirectly by being a member of an affected family. Healthcare professionals are also (in part) concerned with genome 2. In their professional work, which combines the biomedical and the patient-centred views, they cross the interface between the two perspectives. Genome 1 contains all testable genetic variations, SNPs, sequences and genomic data, together with the corresponding medical interpretation given by doctors, scientists and genetic counsellors. It includes explanations of genetic risks, of inheritable factors and so on, and explanations of the functioning of the genome and its variations in the cellular metabolism. Genome 2 is the genome in the understanding of those who embody the genome, who ‘live’ it, who are affected by it, who narrate it and understand their relationships to others by using elements of genetic knowledge, who make life plans accordingly (choosing a partner, planning a family and so on). The genome is imagined and continuously reconceptualised in the lifeworld of those individuals and families who live the genome. This lived genome interprets24 the biomedical construct of a physico-chemical entity that is called a ‘genome’, which – in contrast to other parts of the body such as the beating heart – is not accessible to direct experience. It thereby integrates culturally mediated symbols and metaphors of genetics (such as the genome as a ‘language’, a ‘text’, a ‘program’, a ‘library’, a ‘mosaic’ and the like) and combines them with personal understandings into a partially comprehensible and partially mysterious text. Edmund Husserl introduced the term ‘lifeworld’ in The Crisis of European Sciences and Transcendental Phenomenology (1936).25 The lifeworld is prior to the objective knowledge of the physical sciences, and works as a collective intersubjective pool of perceptions. It acts as a foundation for the scientific perception of reality, in which an idealised (mathematically abstract) ‘nature’ of scientific theory, in the perception of members of society, replaces the pre-scientific and concrete lifeworld. As Husserl claimed, this process of substitution of the mathematically sub-structured world of physics for the real world started historically with Galileo, who successfully invented the method of geometrical idealisation in physical research and believed, as he famously put it, that the book of nature is written in mathematical language – which is an ontological claim. This concept of the lifeworld as a pre-scientific world was then expanded and developed by sociologists of knowledge such as Alfred Schütz and Thomas Luckmann.26 They speak of reserves of knowledge that have certain structures

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and are composed of different types of knowledge with different levels of relevance. In order to make this concept useful for a social epistemology of genetic knowledge, we suggest that the lifeworld needs to be understood in such a way that it can incorporate scientific knowledge as well, although in an interpreted form. That is what we mean when we speak of the genome 1 and genome 2 as ‘inter-related’. Scientific knowledge is not incorporated into genome 2 in its ‘raw’ form, as produced by science and medicine. It is transformed in order to meet the needs of everyday life. How this translation is performed is an empirical question that is interesting to explore regarding specific topics – such as genomics. In order to learn about that, we need to ask the people who do this translation, since they are experts on their lifeworld genetic knowledge.27 This investigation needs to be sensitive to a transformation of the ‘gaze’, which is implied in the geneticisation of disease experiences. The gaze of the Galilean type28 sees the limits on embodied human existence as issues for technical improvement, for the management of risks and the maximisation of wellbeing, while a lifeworld ‘gaze’ would include a broader repertoire of meanings.

Research Perspectives: Methods for Studying the Lived Genome In order to study the lived genome we need to look at the processes by which people make sense of genomic information in lifeworld contexts. Geneticisation, a term introduced by Lippman in 1991, ‘refers to an ongoing process by which differences between individuals are reduced to the DNA codes, with most disorders, behaviours and physiological variations defined, at least in part, as genetic in origin’.29 Applying this to the study of genome 2 would mean monitoring which differences between individuals are actually redefined as genetic, which aspects are lost by this reduction, and to what degree these variations are geneticised. However, in order to understand the ways in which genetic explanations are also seen as positively meaningful, we need to expand the concept of geneticisation. Instead of expecting genetic explanations to be reductionist in the first place, involving a loss of value and meaning, we first ask which questions are answered by genetic explanations. To what question does genetic information provide an answer? What are the hopes and fears that people direct towards genetic explanations, even before they know them? A lived genome study poses questions such as: What kind of evidence is produced by particular genetic explanations? In which context? By whom and for whom? What questions are hidden or silenced in social processes of ‘genetic reduction’? What are the benefits of a genetic explanation of a condition? And what are the losses? How are genetic explanations creatively integrated into or complemented by non-genetic explanations? These questions inspire the guiding research perspective of qualitative empirical studies in different ways. Here are a few examples. Monica Konrad30 asked what it actually means to be classified as a person with a predisposition (specifically, to Huntington’s disease), which local moralities guide the resolution of disclosure dilemmas, and how the life sciences create ‘pre-symptomatic persons’ as new forms of social

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identities. Scully, Porz and Rehmann-Sutter31 asked how time functions as a factor in genetic decision-making. Britta Pelters32 organised her study of breast cancer patients ‘doing health’ around the question of how genetic diseases are socialised and what roles the disease adopts in families. Martin Richards33 made an autobiographical ethnography describing his use of personal genome scans from two direct-to-consumer test companies. Robert Klitzman34 took a comparative approach and studied the testing and disclosure decisions of symptomatic and non-symptomatic individuals with genetic predispositions for Huntington’s disease, alpha-1 antitrypsin deficiency and breast cancer. Andrea zur Nieden,35 in her recent study of the subjectification of breast cancer, took an approach via narrative identity, asking how the interviewees position themselves in the discourse as a particular type of personality. Since meanings need to be explored openly and testable hypotheses are rare, qualitative approaches are the methods of choice for studying the lived genome. Genes carry meanings within the lifeworlds of persons who experience the biological, psychological and social implications of genetic diseases – whether as affected individuals, family members, scientists or health professionals. These meanings need to be captured and understood. In narratives (which can be collected in interviews, focus groups, participant observation or documents) the intricacies of individual meaning-making and the individual interpretation of genomic knowledge (and other omics data) can be explored in depth. By observing situations of communication we can explore how different explanations and coping approaches interact with each other. Breaks can occur within and between individual epistemologies; tensions are to be expected where new understanding emerges. A lived genome study should centre on the views and experiences of individuals, compare their local sense-making strategies with those of others, and analyse both the narratives and (if a study includes focus groups or participant observations) the interactions. For the interpretation of the data inductive research strategies can be used, such as Grounded Theory (GT)36 or Interpretative Phenomenological Analysis (IPA).37 The IPA perspective sensitises the researcher to the double hermeneutics of data analysis: the participants are searching for sense within their own experiences of life with a genetic disease or with the results of a genetic test, and in turn, the researcher is searching for sense within the narrated and transcribed sense-making strategies of the participants.38 The researcher must reflect upon his or her preconceptions and pre-understandings of the data and the topics covered.39 The interpreter should try to adjust his or her own preconceptions as part of the hermeneutical process.40 This methodology is not meant to be exclusive; it can be complemented by methods from cultural studies, history, literary analysis or philosophical phenomenology.

Workshop: Embodiment and Socialisation of Genetics of Chronic Inflammatory Bowel Diseases We are currently investigating the lived genome in a project about people living with chronic inflammatory bowel diseases, such as Crohn’s disease and ulcerative colitis, in Germany.41 Within our understanding of the aetiology of these diseases there is a shift

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taking place – from a psychosomatic paradigm to one of genetic susceptibility. Our working hypothesis is that this ongoing ‘geneticisation’ has practical significance in patients’ and their families’ lives, and that it is possible to investigate how the patients embody, socialise and reshape genetic knowledge in their own ways. There are currently forty-one persons participating in our study. The sample is spread over all regions of Germany and all sectors of society. It includes twenty-three cases of Crohn’s disease, six cases of ulcerative colitis and twelve relatives and friends of affected persons. The majority of the participants are women who are suffering from one of the two diseases. Most of the participating men are spouses or close friends.42 We have conducted semi-structured narrative interviews with patients and members of their families. Most of our study participants were recruited through a self-help organisation, the German Crohn’s/Ulcerative Colitis Association (Deutsche Morbus Crohn/Colitis ulcerosa Vereinigung (DCCV)). They were interviewed by the second author of this chapter. The interviews were recorded and transcribed verbatim. Pseudonyms were chosen by the researchers. In the course of the interviews, we invite the participants to talk freely about their life history with respect to their disease. This helps us to obtain an insight into their own understanding of their lifeworlds and their experiences with their diseases. These narratives already contain independent interpretations, pictures of and attitudes towards genetics and heredity that are deeply intertwined with life circumstances in both individual and social terms. As soon as this background is deployed, we invite the participants to talk about their attitudes, expectations and individual experiences of the genetic explanation of Crohn’s or colitis. As described above, we use a mixed methodology for the analysis of the obtained material: an alloy of GT strategies and IPA. This mixture helps us to analyse the sensemaking processes of our interlocutors within the rich context of their experiential worlds. We search for recurring patterns on the level of the narratives and compare them to those of other participants. Unlike Robert Klitzman, Andrea zur Nieden, Britta Pelters or even Monica Konrad, we try to avoid an early psychologisation in this process, and take our material seriously on the structural and narrative level. This kind of analysis has revealed two basic narratives of coping with the (partially conflicting) genetic and psychosomatic explanations of the disease: a narrative that centres on guilt and shame, and a narrative that centres on individual agency. Below, we sketch out and illustrate them with some translated quotations from interviews.

Narrative 1: Guilt A first kind of narrative given by participants oscillated around experiencing guilt. Both patients and relatives described guilt as a constantly present and sometimes overwhelming emotion. Crohn’s or colitis, which sometimes causes ‘terrible, debilitating diarrhoea’,43 can severely affect everyday family life. Especially during sporadic exacerbations, in phases of adverse food reactions or in the context of a progression of the disease, many things become extremely difficult or almost impossible to plan: periods abroad for study or holidays, dinners with friends, birthday celebrations, professional appointments or even visits to the hairdresser. For our participants,

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these issues were often associated with apologies, remorse and the implicit sense of disappointing somebody.44 Ulrike, a 45-year-old Reiki master, reported that she sometimes felt guilty about poorly schedulable events – particularly in connection with her adult daughter:45 I was off on a Reiki weekend with her – something we’ve done together for years – and I had eaten salad two days in a row. What I did not realise was that it was just the moment where I could not take it, and the scars in my gut worsened the situation. That means for a start that it was all closed off. And then I threw up all night, and I recognised it and saw the signs [. . .]. [T]hen I thought: ‘That poor girl, now she’s here alone with me, there’s no one else here to support her either.’ That was a situation where I realised, very, very intensely, what a disease like this means or could mean for my children as well [. . .].46 Here, guilt is also felt because of the possibility that her daughter has inherited susceptibility to the disease. A second significant dimension of guilt is often imposed from the social environment and is verbalised as some kinds of accusation. Relatives, friends, colleagues, partners and sometimes even family doctors tell the patients that they are exaggerating their condition, they should pull themselves together, or give themselves a treat to overcome phases of disease. In the eyes of many of our interview partners, such statements imply that they are not making enough effort to improve their condition, that they are using their illness to evade responsibility or exaggerate at least parts of their condition.47 The disease experience is interpreted as a mental health issue.48 Many interviewees associate these negative reactions in the social environment with psychosomatic explanatory models. These models are thus perceived rather negatively, whereas other explanations such as a genetic aetiology are perceived as a relief. In the words of 46-year-old Ute from Karlsruhe: I did understand that there is this argument that there is a barrier defect [a microbiomic explanation of chronic inflammatory bowel diseases, which is compatible with genetic explanations], and I found this a very great relief, and I said: ‘Look, this explains my rheumatism as well. That simply explains the whole situation [. . .].’ And for me that was for a start a very great relief and an unburdening, because it is an incredible psychological pressure when you have the feeling that it’s somehow your fault, I mean, if you put it on a psychosomatic track.49 Even the saying ‘a healthy mind in a healthy body’, which is used in everyday life as well as in theories of illness, is hurtful in this context because it can be contradicted by lived experience. For example, Mechthild, a woman in her late fifties, who is involved in various self-help networks, states: When I was a representative [of the DCCV] and doctors tried to show [other patients] that if they treat it properly they’ll be as well as I am, then I always

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objected vehemently and said: ‘I think you’re blaming us if you use me as a positive example, because I know many [other patients] who would like to live as well as I do, and I experience them as life-affirming as well. I mean, they’re similar to me but they’re still very ill.’ So I’ve always been very much against it, if they tried to push us into this ‘all-in-the-mind category’, because I felt they [the doctors] wanted to abdicate responsibility, I mean, they didn’t want to refer us to gastroenterologists as helpers, but to the psycho-people [psychotherapists].50 The participant speaks about experiencing the way that health and personal attitude are often brought into a reciprocal confirmation context, by medical professionals – and she was used for this purpose in her function as the representative of a patient organisation. Her observation emphasised, however, that people can have severe diseases despite having a similarly positive attitude as she herself did. This made her resistant to such causal explanations based on a psychosomatic model because she recognised it as a practice of blaming patients for their condition. Moreover, she interprets the references to psychosomatics and the corresponding therapies as a way for physicians to avoid responsibility. Central to these statements is Mechthild’s perception of psychosomatic medicine as something that transfers the blame for the disease to the patient – which is challenged by her everyday experience. Such positions arise frequently in the broad and prolonged experience of chronic inflammatory bowel diseases. Patients may become a part of the medical history of their own diseases – as some of the participants told us. Personal biographical experiences and epistemologies can connect and combine so that they turn into medical explanatory models. One example of this is the story of the 65-year-old retiree, Agathe. She first suffered from severe diarrhoea and cramps in the 1970s. After a few weeks she consulted her family doctor and was diagnosed with ulcerative colitis – considered a psychosomatic disease within the prevailing medical paradigm of that time.51 The doctor told her, as she recollects, to ‘have some psychotherapy to feel healthy again soon’.52 But that did not work well and her psychotherapist sent her for further diagnoses to Lübeck – then a leading location for psychosomatic research on chronic inflammatory bowel diseases. There, she gained more experience of the psychosomatic model and was given encouragement within that framework. Although the psychosomatic explanation worked well in therapy, it was repeatedly used by ‘the outside’ (i.e. her social environment) as some kind of ‘my-fault theory’.53 She felt the rise of genetic explanations in the 2000s to be a great relief, especially since it coincided with lived experiences within her family. She states: Well, my grandfather probably also had Crohn’s disease. He was in hospital 100,000 times because of intestinal obstructions and of his four children, three of them had a chronic inflammatory bowel disease [. . .]. So my aunt died of it during the war at the age of 19. She quite simply starved to death. [2] And my [1] father died after an operation on an abscess. It wasn’t yet fully diagnosed, but he had an abscess in his bowel and he died after the operation and it’s very likely that that

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christoph rehmann-sutter and dana mahr was also something similar [. . .].54 Well, since I’d somehow been thinking for over 30 years that the predisposition is inherited, it [the genetic explanation of some aspects of chronic inflammatory bowel disease] wasn’t particularly sensational for me. Well, I just accepted it. [2] [. . .] But I think it was a relief. It was a relief to know. Above all [1], because of this psychosomatic theory, I mean, for many people this is a ‘my-fault theory’ of the type, ‘You just have to try hard enough and you’ll be well again.’ I mean, that’s actually not very funny.55

Two aspects of these statements are particularly interesting. First, Agathe has preexisting genealogical inheritance ideas, which in her eyes are only confirmed by the scientific molecular biological evidence. In other words, she creates her own concept of intrafamilial disease transmission (her own genome 2) and takes it as relevant experiential knowledge before genome 1 (the scientific and biomedical concept) became important in the explanation of chronic inflammatory bowel disease in her life. Secondly, Agathe’s statements exemplify something that is characteristic for all participants in our study who interpret their disease experience in the context of guilt narratives. She welcomes the rise of genetic explanations and instrumentalises them as a kind of tool with which to rebut the perceptions of the disease in her social environment. Through this, genes gain lifeworld significance as a defence against the attribution of irresponsibility (and individual guilt feelings resulting from this) by their relatives, friends, colleagues and so on.56

Narrative 2: Agency Other participants interpret the geneticisation of chronic inflammatory bowel diseases through a complementary narrative – mostly against the background of a social environment that turns more towards lived experience. Although they also experience occasional guilt about the impact of the disease on their relatives, they manage to use it positively by converting it into agency. This works particularly when they receive positive feedback or prove to be resilient against guilt narratives.57 These participants prefer psychosomatic explanations over genetic models because they assume that they can deal with them more autonomously: a kind of agency that, in their eyes, is lost with genetic models. A good example of this was provided by 45-year-old Sabine. In her view, selfresponsibility is the key to living well while coping with chronic inflammatory bowel disease, and the best way to achieve this is through various methods of psychotherapeutic treatment plus self-care. From the perspective of some affected persons like Sabine, genetic explanations threaten this because, in her view, the genetic explanation makes it easy for patients and their relatives to diffuse responsibility. Sabine explains: I think general personal responsibility gets a very raw deal, and um, if our musicians [the scientists and doctors who advocate genetic explanations for chronic inflammatory bowel disease] now start to sing its praises, um, then I’m, that’s my

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fault alone. So I would agree that, it’s perhaps ignorance, it’s definitely terribly frightening to say all at once that there’s something physically wrong and I’m responsible for it myself.58 Against this background, the disease can be interpreted as a compass for or a companion in self-care. In the words of Sabine: ‘I am, um, very much convinced that Crohn’s is my buddy, that he’s saying inside me: “Now look, you’ve gone too far here.” Or, “Hey, won’t you even stop?”.’59 Sabine describes a way of dealing positively with the disease. But this agency is also interpreted as fragile and is threatened by genetic explanations, particularly through the associated risk of loss of personal responsibility. The two narratives presented above should give a brief impression of the complex exploration of genomic explanations through the eyes of concerned persons and their social environment. They show how deeply scientific explanations and their interpretations can be interwoven with lifeworld experiences and their respective epistemologies: genetic probabilities get interlaced with individual feelings about guilt or shame; genetic explanatory models become conceptualised as a protective shield against blame from the patient’s environment and so on. They also show that the interpretations of genetic information in genome 2 cannot be separated from illness narratives and concrete disease experiences. The narratives of Ulrike, Ute, Mechthild, Agathe, Sabine and other participants in our study indicate that patients produce a certain kind of knowledge, which must be seen and integrated as a relevant element for the conceptualisation of medico-scientific concepts.

Conclusion Genomics is about human bodies, both lived bodies and bodies conceptualised by the life sciences. Those who are not professional geneticists are lay people with regard to scientific genomic knowledge. The lay side is nevertheless very active in interpreting and making sense of genomic information. Lay people are experts in their reflexive embodiment, which is interpretative work on their lived body. To study the genome as it appears in lifeworld contexts means to appreciate patients’ and families’ knowledge of the diseases. It contributes to a fuller understanding of the essence of genomic information. Reflexive embodiment of genomics is not a scientific but a cultural project. To understand genomic information is a real translation (not at all an application or just a simplified explanation) of information in biomedical frameworks into information in the meaningful frameworks of individual and social lives.

Acknowledgements We are grateful to Sarah Atkinson, Monica Buckland, Jackie Leach Scully and Angela Woods for helpful comments on earlier versions of the manuscript and to Monica Buckland for language revision.

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Further Reading Robert P. George, ‘Ethics, Politics, and Genetic Knowledge’, Social Research 73 (2006), pp. 1029–32. Robert L. Klitzman, Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing (Oxford: Oxford University Press, 2012). Monica Konrad, Narrating the New Predictive Genetics: Ethics, Ethnography and Science (Cambridge: Cambridge University Press, 2005). Martin Richards, ‘Reading the Runes of My Genome: A Personal Exploration of Retail Genetics’, New Genetics and Society 29 (2010), pp. 291–310. Jackie Leach Scully, Rouven Porz and Christoph Rehmann-Sutter, ‘ “You Don’t Make Genetic Test Decisions from One Day to the Next” – Using Time to Preserve Moral Space’, Bioethics 21 (2007), pp. 208–17.

Notes 1. Rayna Rapp, Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America (New York: Routledge, 1999), p. 3. 2. Monica Konrad, Narrating the New Predictive Genetics: Ethics, Ethnography and Science (Cambridge: Cambridge University Press, 2005). 3. Martin Richards, ‘Reading the Runes of My Genome: A Personal Exploration of Retail Genetics’, New Genetics and Society 29 (2010), pp. 291–310. 4. Maurice Merleau-Ponty, Phénoménologie de la perception (Paris: Gallimard, 1945), pp. 114ff. (First Part). 5. Shaun Gallagher, ‘Body Image and Body Schema: A Conceptual Clarification’, Journal of Mind and Behavior 7.4 (1986), pp. 541–54. 6. Karin Knorr Cetina, ‘Culture in Global Knowledge Societies: Knowledge Cultures and Epistemic Cultures’, Interdisciplinary Science Reviews 32.4 (2013). 7. Kristien Hens, Wybo Dondorp, Alan H. Handyside, Joyce Harper, Ainsley J. Newson, Guido Pennings, Christoph Rehmann-Sutter and Guido de Wert, ‘Dynamics and Ethics of Comprehensive Preimplantation Genetic Testing: A Review of the Challenges’, Human Reproduction Update 19 (2013), pp. 366–75. 8. Bernard Dickens, ‘Ethical and Legal Aspects of Noninvasive Prenatal Genetic Diagnosis’, International Journal of Gynecology & Obstetrics 124 (2014), pp. 181–4. 9. William Viney, ‘Getting the Measure of Twins’, in this volume, pp. 104–19; Effy Vayena and Barbara Prainsack, ‘Regulating Genomics: Time for a Broader Vision’, Science Translational Medicine 5 (2013), pp. 2–3; and Barbara Prainsack and Alena Buyx, ‘A Solidarity-based Approach to the Governance of Research Biobanks’, Medical Law Review 21 (2013), pp. 71–91. 10. Jeantine E. Lunshof, George M. Church and Barbara Prainsack, ‘Raw Personal Data: Providing Access’, Science 343 (2014), pp. 373–4; Christoph Rehmann-Sutter, ‘Pflicht zur Information’, in Johann S. Ach, Beate Lüttenberg and Michael Quante (eds), Wissen Leben Ethik: Themen und Positionen der Bioethik (Münster: Mentis, 2014), pp. 53–65. 11. Robert C. Green, Jonathan S. Berg, Wayne W. Grody, Sarah S. Kalia, Bruce R. Korf, Christa L. Martin, Amy L. McGuire, Robert L. Nussbaum, Julianne M. O’Daniel, Kelly E. Ormond, Heidi L. Rehm, Michael S. Watson, Marc S. Williams and Leslie G. Biesecker,

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12.

13. 14.

15. 16.

17.

18.

19.

20.

21.

22. 23.

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‘ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing’, Genetics in Medicine 15.7 (2013), pp. 565–74. Still relevant is the collection edited by Theresa Marteau and Martin Richards, The Troubled Helix: Social and Psychological Implications of the New Human Genetics (Cambridge: Cambridge University Press, 1996). Barbara Prainsack and Jenny Reardon, ‘Misdirected Precaution’, Nature 456 (2008), pp. 34–5. Robert L. Klitzman, Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing (Oxford: Oxford University Press, 2012); Carl F. Cranor (ed.), Are Genes Us? The Social Consequences of the New Genetics (New Brunswick, NJ: Rutgers University Press, 1994). This term was introduced by Nick Crossley in Reflexive Embodiment in Contemporary Society (Maidenhead: Open University Press, 2006). Gale M. Sinatra, Dorothe Kienhues and Barbara K. Hofer, ‘Addressing Challenges to Public Understanding of Science: Epistemic Cognition, Motivated Reasoning and Conceptual Change’, Educational Psychologist 49 (2014), pp. 123–38; and Brigitte Nerlich, Richard Elliott and Brendon Larson (eds), Communicating Biological Sciences: Ethical and Metaphorical Dimensions (Farnham: Ashgate, 2009). Robert L. Klitzman (Am I My Genes?) studied the local understanding of genetic information about Huntington’s disease, alpha-1 antitrypsin deficiency and breast cancer by interviewing individuals who did and did not have symptoms, and who had and had not had genetic testing. Ruth R. Faden and Tom L. Beauchamp, A History and Theory of Informed Consent (Oxford: Oxford University Press, 1986); and Christoph Rehmann-Sutter, ‘Das ganze Genom: Ethische Überlegungen zur vollständigen Sequenzierung der individuellen NA’, in Claus R. Bartram, Monika Bobbert, Dieter Dölling, Thomas Fuchs, Grit Schwarzkopf and Klaus Tanner (eds), Der (un)durchsichtige Mensch (Heidelberg: Universitätsverlag, 2012), pp. 255–78. We refer to the work of social philosophers Margaret S. Archer (2007) and Nick Crossley (2006), who explore how humans develop their identities, aside from classical dualisms. They investigate the internal dialogue about experiences and new bodies of knowledge in the context of everyday practices and the journey through life. Margaret S. Archer, Making our Way through the World: Human Reflexivity and Social Mobility (Cambridge: Cambridge University Press, 2007), pp. 314–25; cf. Nikolas Rose, ‘Molecular Biopolitics, Somatic Ethics and the Spirit of Biocapital’, Social Theory and Health 5 (2007), pp. 3–29. Robert P. George, ‘Ethics, Politics, and Genetic Knowledge’, Social Research 73 (2006), pp. 1029–32; cf. Christoph Rehmann-Sutter, ‘Genetics, A Practical Anthropology’, in Marcus Düwell, Christoph Rehmann-Sutter and Dietmar Mieth (eds), The Contingent Nature of Life: Bioethics and the Limits of Human Existence (Dordrecht: Springer, 2008), pp. 37–52. See Lily E. Kay, Who Wrote the Book of Life? A History of the Genetic Code (Stanford: Stanford University Press, 2000). See Susan Oyama, The Ontogeny of Information: Developmental Systems and Evolution (Cambridge: Cambridge University Press, 1986); Eva M. Neumann-Held and Christoph Rehmann-Sutter (eds), Genes in Development: Re-Reading the Molecular Paradigm (Durham, NC: Duke University Press, 2006); and Kirsten Schmidt, Was sind Gene nicht? Über die Grenzen des biologischen Essentialismus (Bielefeld: Transcript, 2014).

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24. Cf. the ‘subject body’ and the ‘object body’ in P. Ricœur, Freedom and Nature: The Voluntary and the Involuntary, trans. E. V. Kohák (Evanston: Northwestern University Press, 1966), p. 10. 25. Edmund Husserl, Die Krisis der europäischen Wissenschaften und die transzendentale Phänomenologie, ed. by E. Ströker (Hamburg: Meiner, 2012). 26. Alfred Schütz and Thomas Luckmann, Strukturen der Lebenswelt, 2 vols (Frankfurt am Main: Suhrkamp, 1979 and 1984). 27. Felicity Callard, Diana Rose, Emma-Louse Hanif, Jody Quigley, Kathryn Greenwood and Til Wykes, ‘Holding Blame at Bay? “Gene Talk” in Family Members’ Accounts of Schizophrenia Aetiology’, BioSocieties 7 (2012), pp. 273–93. 28. The contrast of two ‘gazes’ refers to Blumenberg’s ‘Lebenswelt und Technisierung unter Aspekten der Phänomenologie’ in his Wirklichkeiten in denen wir leben (Stuttgart: Reclam, 1981), pp. 7–54. 29. Abby Lippman, ‘Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequalities’, American Journal of Law and Medicine 17 (1991), p. 19. 30. Konrad, Narrating the New Predictive Genetics. 31. Jackie Leach Scully, Rouven Porz and Christoph Rehmann-Sutter, ‘ “You Don’t Make Genetic Test Decisions from One Day to the Next” – Using Time to Preserve Moral Space’, Bioethics 21 (2007), pp. 208–17. 32. Britta Pelters, Doing Health in der Gemeinschaft. Brustkrebsgene zwischen gesellschaftlicher, familiärer und individueller Gesundheitsnorm (Bielefeld: Transcript, 2012). 33. Richards, Reading the Runes. 34. Klitzman, Am I My Genes? 35. Andrea zur Nieden, Zum Subjekt der Gene werden: Subjektivierungsweisen im Zeichen der Genetisierung von Brustkrebs (Bielefeld: Transcript, 2013). 36. Cf. Juliet Corbin and Anselm Strauss, ‘Grounded Theory Research: Procedures, Canons, and Evaluative Criteria’, Qualitative Sociology 13 (1990), pp. 3–21; Kathy C. Charmaz, ‘ “Discovering” Chronic Illness: Using Grounded Theory’, Sociology of Science and Medicine 30 (1990), pp. 1161–72; and Kathy C. Charmaz, Constructing Grounded Theory: A Practical Guide through Qualitative Analysis (Thousand Oaks: Sage Publications, 2006). 37. Elizabeth Chapman and Jonathan A. Smith, ‘Interpretative Phenomenological Analysis and the New Genetics’, Journal of Health Psychology 7.2 (2002), pp. 125–30; Jonathan A. Smith and Michael Osborn, ‘Interpretative Phenomenological Analysis’, in Jonathan A. Smith (ed.), Qualitative Psychology: A Practical Guide to Research Methods (Thousand Oaks: Sage Publications, 2003), pp. 53–80; Jonathan A. Smith, Paul Flowers and Michael Larkin, Interpretative Phenomenological Analysis: Theory, Method and Research (Thousand Oaks: Sage Publications, 2009); Elizabeth Cassidy, Frances Reynolds, Sandra Naylor and Lorraine De Souza, ‘Using Interpretative Phenomenological Analysis to Inform Physiotherapy Practice: An Introduction with Reference to the Lived Experience of Cerebellar Ataxia’, Physiotherapy Theory and Practice 27 (2011), pp. 263–77. 38. Smith and Osborn, Interpretative Phenomenological Analysis, p. 53. 39. Dana (born: Dominik ) Mahr, ‘Matthias Flacius Illyricus (1520–1575). Eine erste Theorie der Hermeneutik im Zeitalter der Reformation’, in Susanne Luther and Ruben Zimmermann (eds), Studienbuch Hermeneutik. Bibelauslegung durch die Jahrhunderte als Lernfeld der Textinterpretation. Portraits – Modelle – Quellentexte (Gütersloh: Gütersloher Verlagshaus, 2014), pp. 158–65. 40. Smith and Osborn, Interpretative Phenomenological Analysis, p. 53.

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41. See our project homepage: (accessed 13 April 2015). 42. This conspicuous gender distribution will be a subject at a later stage of our project. 43. Anonymous, ‘A Patient’s Perspective: My Battle with Crohn’s Disease’, American Journal of Gastroenterology 102 (2007), p. 482. 44. Interview with Nina and Jens. 45. All interview passages quoted were translated from German into English. We have tried to preserve the linguistic style of the participants as far as possible. Square brackets tagged with ellipsis indicate omitted content that is not relevant for the argumentation of this chapter. Ellipsis without square brackets indicates that the interview partner paused her or his story at this point for more than 1 second. Square brackets also sometimes contain explanatory comments by the authors. 46. Interview with the participant Ulrike. Timestamp: 00:17:40–1. 47. To counter such attributions and accusations, some participants report that they come up with excuses for their condition, absence or delay. See, for example: Interview with the participating couple Hendrik and Melanie. Timestamp: 00:16:32–8. 48. Typically, 34-year-old Linda was told here: ‘It’s clear you’re just doing too much!’ See, for example: Interview with the participant Linda. Timestamp: 01:16:16–3. 49. Interview with the participant Ute. Timestamp: 00:22:48–7. 50. Interview with the participant Mechthild. Timestamp: 00:54:55–3. 51. Interview with the participant Agathe. Timestamp: 00:13:20. 52. Ibid. Timestamp: 00:13:20. 53. Ibid. Timestamp: 00:18:15. 54. Ibid. Timestamp: 00:21:46. 55. Ibid. Timestamp: 00:34:34. 56. Interview with the participant Ute. Timestamp: 00:22:00–0. 57. Cf. Interview with the participant Sabine. 58. Interview with the participant Sabine. Timestamp: 00:28:53. 59. Ibid. Timestamp: 00:18:07.

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5 GETTING THE MEASURE OF TWINS William Viney

Introduction tephen Jay Gould, the biologist and author of The Mismeasure of Man, once joked that were he an identical twin raised separately from his brother they could ‘hire ourselves out to a host of social scientists and practically name our fee’.1 In order to monetise Gould’s fantasy, one would want a form of twinship that could operate according to evidential, experimental, somatic and circumstantial ideals. And Gould admits that he and his brother would need to be viewed as ‘the only really adequate natural experiment for separating genetic from environmental effects in humans’.2 With respect to Gould’s light-hearted intentions, this chapter seeks to interrogate the evidential and experimental circumstances that may underpin the comic quips that guide modern biology, especially the power of what he calls a ‘natural experiment’. In human genetics, twins are used as experimental bodies that are made to matter in particular ways and for particular people; they become newly ‘animate’ for being enrolled into scientific research. Raised in cultures assumed to be alike or dissimilar, isolated by researchers for being valuable in the measured disentanglement of assembled molecular agents (which are sometimes distinguished from an assemblage referred to as an ‘environment’), twins achieve a status of experimental significance not just for what they do but also for what they are taken to be. The use of human twins in biomedical research has been a topic that has drawn hot controversy throughout the twentieth and twenty-first centuries. But their inclusion within programmes of scientific research has cultivated a popular belief, echoed by Gould, that they remain ‘science’s favourite subjects’.3 Divisions between domains labelled ‘scientific’ and ‘non-scientific’ are drawn upon and manipulated when identifying particular groups of people, who are then permitted to be bearers of given research paradigms. Drawing inspiration from Ian Hacking’s work on ‘human kinds’, I will note how twins become delineated in the pursuit of scientific objectivity.4 In this light, rather more ancient forms of curiosity, strangeness and exoticism will be invoked, especially when wonder extends into the utile, scientific expectations of contemporary epidemiologists, psychologists and geneticists. Moreover, the chapter reflects upon how the use of certain human groups in scientific research affects how those groups are viewed beyond the specific temporal, spatial and institutional circumstances of that use. Perhaps, in taking this course, I work to dispute an exclusively ‘scientific’ domain

S

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of knowledge, yet this is not done in a spirit of condemnation. Statements about the importance of twins in contemporary culture imply complex and dynamic systems not easily contained by laboratory conditions. It should be acknowledged that this chapter was written at a time when the favouritism shown to twins by scientific researchers was being challenged. In 2013 Michael Rossi wrote in The London Review of Books, ‘twin studies are falling increasingly out of fashion as a tool for probing the intricacies of human behaviour, replaced by technologies for mapping genomes, measuring gene expression and analysing neurochemical activity.’5 For Rossi, twin research may be a ‘tool’ but it is a technology that has fallen from grace and has been superseded by other methodological ‘fashions’. There are, of course, plenty of different ways of viewing the same fashion show. For example, 1.5 million twins and their family members are now participating in studies around the world, gathered into twin registries that contain anything up to 200,000 participants.6 Furthermore, twin research can enter and has entered into complementary relationships with scanning, sequencing and modelling technologies. Indeed, twin studies have frequently provided the rationale for investigating the genetic causes of some diseases over others, giving value to and legitimising investment in newer research technologies. Moreover, twin studies are used alongside the mapping and measurement of genomic activity that Rossi claims has superseded twin research.7 As a consequence, approximately 9% of genome-wide association studies (GWAS) use twin data in some form.8 Some claim that twin studies are especially useful for the analysis of epigenetic processes, where genomically alike monozygotic (‘identical’) twins, discordant for certain phenotypes, are used to understand the developmental aetiology of complex behaviours and diseases at a molecular level.9 It might be wiser not to proclaim an end to twin studies thanks to technological change but to understand how the use of twins in genetics, epidemiology, psychiatry, psychology and the social sciences represents a research technique that, while being 140 years old, continues to prove highly amenable to wider methodological, technological and epistemological changes in the biomedical sciences.10 Describing the significance of twin research for the development of scientific knowledge from the late nineteenth to early twenty-first centuries, Susan Lindee encourages us to see twins as ‘a node in a thick network of meaning, technology, and social organization [. . .] a window, a point of entry, a historiographical experimental organism’.11 Imagining twins as a nodal point for the growth of the so-called ‘technosciences’ may have its advantages, especially for those wanting to affirm the political and economic growth of biomedical science as a discrete enterprise. However, such a perspective might obscure the particular reasons for recruiting twins into various research projects, time and time again. Some more general questions first require answers: why are twins useful at all? Why do they continue to be useful despite the criticisms levelled by Rossi and others? Although partial responses to these questions are offered below, I hope to explain how some twin researchers divide their methods from their evidence and arguments, facilitating a means to make their work immune from a parallel set of histories that have been formative to the development of twin research in Europe and

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North America. Such parallel histories might include the use of twins as the experiment bases for eugenic research and the laboratory techniques of scientists working in Germany, Poland, Scandinavia, the US, the UK and elsewhere during the twentieth century, the manipulation and fabrication of data, and the frequent and ongoing charges of bias or intellectual weakness that are directed at twin research methods.12 I wish to explore how the ways that human twins are presented as particular kinds of experimental bodies explains how these parallel histories are largely absent from the public presentation of evidence that is drawn from twin studies.13 In order to get the measure of biomedical research that uses twins, I am guided by a hypothesis that this research has gained intellectual resilience and critical immunity through three inter-related factors. I will outline these factors here and develop my arguments in all that follows. Firstly, twins are understood to be uniquely useful; the visceral actuality of twins is understood as a ready experimental tool or apparatus, to be applied to a variety of projects. Twins are instrumental bodies and they elicit particular kinds of evidence with which to convert soft, contingent, fragile and subjective hypotheses into hard, indisputable and objective evidence; the bodies of twins move from being ‘matters of concern’ to ‘matters of fact’.14 Secondly, twins are understood to form this tool unaided – they are imagined to be a ‘natural experiment’ – to provide data that can transcend the time, location and experimental circumstances that generated it. Thirdly, and thanks to what we might term the ‘natural technology’ twins are taken to be, the instrumentalisation of human types in the pursuit of specific kinds of human understanding has led to a form of historical pluralism. This chapter will establish the evidence for each of these claims to argue that the aperture that twin research opens upon biomedical science is not a straightforward or reliable ‘window’; nor is it an uncontested or passive ‘point of entry’. Rather, twin research is formed through instrumental, metonymic, object-oriented relations, where human groups are put to work in the name of evidence and experiment.

Useful Life There exists a longer and yet to be written history of twin use. A history could be written where twins are noted for being exemplars of an idea, belief or counter-belief, reflecting the rather ancient process that recruited twins in order to define who and what ‘we’ are.15 Twins are, for instance, frequently found in ancient myths, religions and cosmologies, in tales of creation and social formation, as well as in foundational Aristotelian, Hippocratic and Galenic works of natural philosophy.16 However, their emergence in scientific biomedical research arises through an explicit identification of use that is ontological and epistemological in nature, not only for being ‘socially’ present and available for future inquiry, but for constituting evidentially rich, experimental beings whose meaning exceeds the restrictions of any spatially or temporally limited laboratory. Twins enter into projective, future-oriented, teleological models of scientific use on the basis that these experimental models are already genetically standardised.

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In ‘The History of Twins, as a Criterion of the Relative Powers of Nature and Nurture’ (1875), Francis Galton viewed human twins – their bodies, histories, relationships and other perceived capabilities – as uniquely useful. While he acknowledged twins to be various – ‘strongly alike, moderately alike, and extremely dissimilar’ – they entered into scientific inquiries and the historical record of those inquiries as a group based on a shared relation to utility. Accordingly, through his use of human twins, Galton’s work remains celebrated for having ‘identified the core questions and some of the basic methods which later generations would refine and develop’.17 Twins offered Galton a means to respond to complaints that measures of heredity overlooked the role of chance, so that some new method [was required] by which it would be possible to weigh in just scales the effects of Nature and Nurture, and to ascertain their respective shares in framing the disposition and intellectual ability of men. The life-history of twins supplies what I wanted.18 In his hands, twins were the means to an experimental end. Galtonian twins, like his photographic experiments, formed part of a wider perceptual apparatus; they gave a new way of seeing the human body as it is formed by heritable traits. Lacking a coherent mechanism for differentiating between monozygotic (‘identical’) twins and dizygotic (‘non-identical’) twins – a distinction that would not become firmly established and incorporated into experimental designs until the 1910s and 1920s – Galton assembled stories about the lives of 94 sets of twins to understand two things.19 Firstly, he wanted to know whether twins that were very similar at birth could develop physical and behavioural differences and, secondly, whether twins who were considered to be dissimilar at birth could grow more alike in later life. He concluded that twins ‘either grow unlike through the development of natural characteristics which had lain dormant at first, or else they continue their lives, keeping time like two watches, hardly to be thrown out of accord except for some physical jar’.20 Galton, a declared hereditarian whose mechanistic language reflects an interest in establishing the laws of biological motion upon Newtonian standards, argued that both inter-twin concordance and discordance reflected the strength of heritable characteristics. The advantage of using twins becomes even clearer when Galton explains the many forms and scales of his evidence base – cases of mistaken identity, attempted and achieved suicide, toothache, the malformation of fingers, and even the slow movement down a flight of stairs – were all presented by Galton as physical and behavioural traits that reflected the inner clockwork of humanity. Meanwhile, the collective twin body has been transformed into a place of abundant evidence. The scientific method does not make twins meaningful; the practice of scientific reasoning is presented as an efficient filter for the successful translation of twinborn noise into a generalisable and communicable signal. This attitude, which treats twins as a storehouse of evidence, has scarcely changed over the last 140 years of research with twins. Galton did not compare identical and non-identical twins to seek intraclass correlations between these two groups for a given trait – intraclass correlations that are

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being frequently understood as the hallmark of the so-called ‘classical twin study’. The specific historical and political development of twin research will be taken up in a later part of this chapter, but in its simplest form the classical model for using twins seeks to produce statistical estimates for the heritability of a trait based upon the following procedure. Firstly, twins are divided according to whether they are monozygotic or dizygotic, with the belief that monozygotic twins, formed by the splitting of one fertilised zygote, share approximately 100% of their genes.21 Dizygotic twins, like other siblings, share closer to 50% of their genome. This is important because it allows a researcher using this design to control for the ‘dose’ of genes and/or ‘environment’ distributed between these two groups. Secondly, each individual in each zygotic group is measured for a trait – from hair colour or height to school achievement or favourite breed of dog. Hence, a correlation can be produced that expresses the ratio of between-pair variation to total variation for that given trait, otherwise known as an intraclass correlation: Several statistical calculations for estimating the heritability coefficient have been reported, the most basic being 2(rMx – rDz). This formula provides an estimate of the total variance of a given trait that may be attributed to genetic variance.22 According to Robert Plomin and colleagues, heritability is ‘the proportion of phenotypic variance that can be accounted for by genetic differences among individuals’.23 So, given differences between the amount of genes shared between monozygotic and dizygotic twins, it becomes possible to estimate the heritability of a given trait by comparing one group with another; ranging from 0.0 (zero heritability) to 1.0 (absolute heritability). It is therefore assumed that higher monozygotic than dizygotic intraclass correlations can demonstrate the genetic influence of a trait. The motion and circulation of heritability scores has been the subject of tremendous debate among researchers working in numerous disciplines; sadly, when played out between twin researchers and those working in the social sciences, those debates have the habit of being antagonistic. It is not my task here to intervene; I only wish to observe that heritability scores can create confusion among non-specialists. For example, correlation coefficients have specific and local meanings according to the researchers producing them and the composition of the populations upon which they are based; they are contingent upon certain bodies in time and space. However, heritability estimates translate complex phenomena into manageable data, gaining rhetorical value through being what Alison Cool has characterised as ‘compact and comprehensible representations of less tangible social phenomena’.24 Intraclass correlations, whose technical value accounts for variation at population rather than individual levels, have the unfortunate tendency to be understood as percentages with predicative capacities (where a 0.8 correlation for schizophrenia is taken to mean that schizophrenia is 80% genetic, and so on): a slippage between the technical heritability of a trait and the likelihood of it being biologically transmissible.25 For these and other reasons, such as the very notion that environmental and genetic effects can be disaggregated, twin researchers are often found to be weary of accusations of genetic determinism

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with which their critics take them to task. Indeed, twin designs might be understood as relatively soft targets for those who aggressively refute the epistemological grounds of data generated by twins, especially for those who take the view that nothing can be predicted or labelled as biologically ‘inherent’. These studies carry a set of circumstances or energies whose intellectual and political import may be missed, were we to focus solely on the validity of their conclusions. Twin research matters because using twins involves the complex designation of human kinds: a process where a group of people are told what they are made from and how they ground our measurements of the human. To ‘get the measure of twins’, something else is needed by which to make that measure, a technological apparatus outside these twin bodies. A critical medical humanities approach, sensitive to the ways in which medical cultures expand beyond familiar clinical or experimental sites, and mindful of the long shadow of ‘alternative’ research practices that have attached themselves to twins, may help to reflect more broadly on the historical consequences of privileging the twin subject as a scientifically significant body. More needs to be understood about the curious animations of twinship when recruited into scientific research, to realise how twin studies, as a technology of thought, feeling and fantasy, prospered before, during and after the Second World War, revealing how scientific progress, experiment and the sacrifice of human life frequently go hand in hand, two by two, twin by twin.

Animate Tools Locating the quality of the twin relation in human genetics has and remains the predominant way to ‘make twins matter’ – dividing them first from the human population and also dividing them from one another according to differences in zygosity. With such divisions come inevitable hierarchies, such as those that wish to elevate twins by making them scientifically significant. Mel Chen’s work on ‘animacies’ describes and can help us understand these hierarchies of agency, awareness, mobility and liveness. Chen uses the concept of ‘animacies’ to articulate and patrol the distinction between what is ‘alive’ and ‘dead’ – a spectrum that has supported normative concepts of ‘the human’ since, at least, Aristotle’s De Anima, and continues to regulate what Chen calls the ‘gradations of lifeliness’.26 From inanimate ‘dead things’, which are assumed to constitute a zero-degree of agency – minerals, stones and other non-sentient objects, through to vegetables, smaller insects and non-vertebrates – to ever increasing levels of agency in larger animals, mammals, children, women and finally Man. Upon the animacy cline, humans are taken to be the ‘maximally agentive’ figure. Animacy implies the stratification of ‘Nature’ according to liveness, purpose and sentience, over which humans assume privileged access. Understanding the racialised, sexualised and ableised political ecologies that feed off and maintain animacy scales helps Chen to ‘trouble the binary of life and nonlife [to give a clearer] way to conceive of relationality and intersubjective exchange’.27 The failures, breaks and contradictions between the animate and inanimate reveal how the

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scales of animacy ‘must continually interanimate in spite of its apparent fixedness’.28 The arts frequently play with this hierarchy – whenever a stone speaks or when a dog smokes a cigar, grins and rides a bike – the scales of sentience ‘interanimates’ to shift positions assumed to be fixed and reveal the structures that give those positions the appearance of fixity. So, Chen refers to animacies on the understanding that many other practices, epistemologies and ontologies are possible. In the use of twins as a tool for scientific study they are made to operate across and between scales, sitting betwixt the clines that run from the animate to the inanimate. Their recruitment into scientific inquiries is brought about and validated by being both sentient human beings and inert, malleable, violable, disposable things. As I noted earlier in this chapter, those born together in a single gestation first entered studies of heredity, genetics and then a wide range of allied fields and subfields through Galton’s biometric analysis of ‘nature and nurture’ – a phrase first coined in relation to his twin studies of the mid-1870s. From Galton we can trace the long process that has scientifically en-thinged twins – recruited them as evidence and material, imagined and treated them as tools in order to animate new theories of life, development and disease. The various materialisations of the twin in these studies take some profundity, for both twins and non-twins, from the sheer range of different objects of interest to which twins seem to give access. This has been secured firstly by identifying their use – as I sketched above – and by locating objects within them that are material and mechanical in their action. These materials range from DNA, RNA codes, enzymes and single-nucleotide polymorphisms (SNPs) to microbial communities in the human gut. These materials and attendant mechanisms may be developmental, behavioural, and disease- and ageing-related, and may arise out of the statistical aggregation of data to form probabilistic relations between given genotypes and phenotypes. Nevertheless, and in contrast to the systems biomedicine described by Annamaria Carusi in this volume, the human source of this evidence grounds the numerical in the organic, the molecular within the molar, making twins the actual and symbolic bearers of vital processes. From the perspective of animacy, we might argue that the scientific use of twins plunges their agentive powers down the animacy scale through their instrumentalisation as and proximity to things – laboratory materials, animals, tools, base matter – what those working in the humanities and social sciences now corral into the category of the ‘non-human’. Meanwhile, the power for twins as telling agents projects them up the animacy scale, for being a powerful investigatory community who are capable of generating, to quote one twin researcher, ‘unique insights [. . .] simply by acting naturally’.29 Every life event, trait, habit or decision is rendered resonant with scientifically universal information, composite bodies used to stabilise and articulate new vital locations, processes and therapeutic possibilities. Twins enrolled in these studies experience and develop their ‘lived genome’ (see Christian Rehmann-Sutter and Dana Mahr in this volume), but do so through a form of genomically guided clinical philanthropy. For the UK’s leading epidemiologist and twin researcher, this creates ‘knowledge and insight for everyone, not just for twins’.30

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Chen’s analysis of animacy provides an important discursive relationship between ‘matter’ as materiality and the hierarchies that ‘matter’ in terms of importance, focus and sentience: ‘language users use animacy hierarchies to manipulate, affirm, and shift the ontologies that matter the world.’31 Consider the status of twins when Nancy Segal, a twin who worked with Thomas Bouchard on the Minnesota Study for Twins Reared Apart (MISTRA), refers to her research participants as ‘a powerful investigatory tool’32 and as ‘living laboratories’.33 Twins matter when they serve as exploratory tools that redistribute authority in a way that, as Isabelle Stengers argues, defines modern science: ‘the invention of the power to confer on things the power of conferring on the experimenter the power to speak in their name’.34 Human influence, manipulation, volunteerism or coercion is written out of those accounts that stress the spontaneous efficiency of the twin body in generating evidence. For experimenters such as Robert Plomin, monozygotic twins who differ for a given phenotype are ‘a sharp scalpel for dissecting non-shared environmental effects from genetic effects’.35 Twins are ‘technical things’ absorbed into experimental systems and used to bring to light and make matter the epistemic objects that comprise molecular processes.36 When twins are figured as ‘laboratories’ or ‘natural experiments’, the concept of the laboratory or, indeed, the experiment as a contained locus for data production is transformed. Georges Canguilhem once wrote, if we may define the normal state of a living being in terms of a normal relationship of adjustments to environments, we must not forget that the laboratory constitutes a new environment in which life certainly establishes norms whose extrapolation does not work without risk when removed from the conditions to which these norms relate.37 Once the experimental apparatus is imagined to be ‘out there’ – located within a living, breathing organism – then the agentive power of science becomes radically realigned. The source, model and target of these data are contained within a particular kind of body. To get the true measure of man, one merely requires a properly trained, dispassionate observer of the kind celebrated in folklore or recurrent in works of science fiction. That this neutrality creates a situation where human life can be sacrificed in the name of ‘accurate’ information only compounds the importance of carefully delineating what is at stake when one organism has the power to designate another as ‘a tool’ for understanding. In his analysis of laboratory life, Bruno Latour has described how a research technique, once it has become routine, can be ‘black-boxed’.38 When this occurs, the technique or procedure becomes a taken for granted and invisible aspect of scientific procedure. In the case of twin research, whose experimental bodies are simultaneously the location for trial as well as the target beneficiaries for potential therapies, it is important to be sensitive to the ways that twin researchers can black-box the specific kinds of humans that make this research process possible, even as the data produced by that research process are presented as ‘natural’. More generally, we need to be especially cautious when contemporary twin researchers use the rhetoric of the

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‘natural experiment’ to distance their work from episodes of injustice and scandal that have plagued twin research since its development in the early twentieth century. What we might call the naturalisation of twin research – aided and abetted by the idea that agentless twins are somehow ‘natural’ tools and laboratories simply waiting to be applied towards the right project – has encouraged some twin researchers to avoid any mention of state-sponsored eugenics in the histories they tell of their science. This, in itself, may not be cause for alarm; one has to accept that the history of genetics is marked by the policy intentions of those who wish to stratify society according to laboratory results. But one consequence of this rhetorical and imaginative caesura within the history of twin research – a symptom and cause of black-boxing twin use in the generation of research findings – is that evidence can be dis-embodied at the precise moment that it gains legitimacy for being ‘lived’. Those sacrificed for the advancement of scientific objectivity can be written out of history. In 1990 Richard Rende, Robert Plomin and Steven Vandenberg published an article entitled ‘Who Discovered the Twin Method?’ in the journal Behavior Genetics. They argued that comparing monozygotic and dizygotic twins to produce information about the heritability of a particular trait came about in 1924, between two seemingly unconnected researchers – an American (Curtis Merriman) and a German (Herman Werner Siemens).39 The suggestion that either Siemens or Merriman ‘discovered’ the twin method while in pursuit of a form of benevolent objectivity clearly fails to do justice to why it was that researchers active in North America and Europe in the 1910s, 1920s and 1930s were so eager to establish the hereditary nature of particular physiological and behavioural differences. Elided from this account of twin research is the precise intellectual and political genealogy of the twin method. The authors fail to mention that Siemens worked closely with and was strongly influenced by Heinrich Wilhelm Poll. Their work with twins, and especially their development of the identical twin difference design, gained them a Nobel nomination in 1933. The nomination was for twin research felt to be ‘of fundamental significance for general hygiene, for eugenics and consequently for the future of humanity’.40 Siemens’s mentor and collaborator became Germany’s first professor in human heredity in 1922. Poll’s rise to fame, and the extension of his influence over younger researchers like Siemens, were won through his twin research into the hereditary qualities of light refraction in the human eye.41 Himself a victim of racial persecution in the late 1930s, Poll’s views on human eugenics are well documented: Just as the organism ruthlessly sacrifices degenerate cells, just as the surgeon ruthlessly removes a diseased organ, both, in order to save the whole [. . .] The path of analysis stands open to us, and now we should start out on the path of synthesis or at least of protection from decay. A new branch of hygiene – racial hygiene – has begun to work out the principles of such a course of action, true to the old principle of medicine that prevention is better than cure.42 From 1914 onwards, Poll used identical twins as a control group for comparative purposes, writing that ‘the well-planned and critical investigation of each suspected

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inherited character for its modification in MZ [monozygotic] twins must be conducted as an essential first step in all human genetics investigations.’43 By 1937, Horatio Newman, a biologist working in Chicago, whose own research techniques proved influential on Thomas Bouchard’s aforementioned MISTRA, credited Poll’s work as ‘the first systematic study of the degrees of resemblance and difference present within identical twin pairs’.44 The financial, state and infrastructural support available to Poll and Siemens throughout the 1920s and 1930s meant that twin research could flourish under National Socialism, especially at the Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics in Berlin.45 As a consequence, the industrial scale of contemporary twin research, particularly the creation of large-scale data registries and the management of detailed, complex datasets, is largely prefigured in the national context of 1930s Germany. By 1938, the German Research Institute for Psychiatry in Munich employed eleven researchers working on material on over 9,000 identical and fraternal twins. They were working, in the words of Sheila Faith Weiss, to ‘provide the hard evidence for the inheritance of pathological mental traits to aid the government’s effort to sterilize the “unfit” ’.46 This work fed directly into eugenic policies in general and Joseph Mengele’s ‘twin camp’ at Auschwitz in particular.47 In his redress to Rende, Plomin and Vandenberg, Oliver Mayo suggests that ‘some of the obscurities in the origin of the [twin] method arose from the usual language problems of English-speaking scientists.’48 While this may be true, some of the obscurities are simply due to poor scholarship and the insularity of many researchers who, like narrow-minded agriculturalists, are primarily concerned about the future of their ‘field’ to the neglect of wider research ecologies. I am not suggesting that twin researchers set out to be revisionists of, much less apologists for, all the possible uses of their research designs. However, the partiality of some histories of twin research seems to reflect a wider capacity – common to all researchers of whatever stripe – to divorce a research technique from its previous applications, motivating hypotheses and, significantly, the individual qualities of research participants upon which their work depends. Alive to the capacity for ‘the history of the twin method’ to be written and rewritten from a number of different perspectives, Thomas Teo and Laura Ball warn that contemporary biomedical practitioners have vested interests in making their research a ‘methodologically progressive and apolitical development’.49 I would like to add that the recurrent belief that the lives of twins constitute objects, instruments, tools and laboratories, with varying levels of animate independence from or collaboration with scientific practitioners, has given twin research a means to revise its history and some protection from the criticism that has always seemed to follow in its slipstream.

Molecular Things For too long, social scientists and humanities scholars have felt it their right and duty to warn scientists, treated as a univocal community, about their ethical, political and epistemological blind spots. This has been the traditional, antagonistic role of postwar

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critique – to debunk and demystify, ‘to detect the real prejudices hidden behind the appearance of objective statements’.50 One of the challenges when developing a ‘critical’ agenda in the medical humanities has been to suggest alternatives to this adversarial thinking, to do more than sit on the sidelines decrying the poor ethics of others and the statutory importance of ‘humanity’. This process might begin by acknowledging how medical and health-related knowledge, care, intervention, education and research are extensively, complexly and unevenly distributed throughout social life, deeply and irrevocably entangled in the vital, corporeal and physiological commitments of biomedical research.51 Such entanglements stress how human bodies are simultaneously social and biological events, prompting questions that may otherwise appear outside the field’s usual repertoire: what are the implications of the ‘thingification’ of twin and other kinds of human body? How does this ‘thingification’ contribute to the use and potential abuse of research participants? Returning to scales of animacy for a moment, the use of twins in contemporary biomedical research problematises both the inanimate, stone-like inertia implied by the notion of insentient ‘things’ and the spatial and temporal integrity of its all-powerful organic counterpart, Man. Chen argues that at the point ‘when humans are blended with objects along this [animacy] cline, they are effectively “dehumanized” and simultaneously de-subjectified and objectified’.52 She uses a distinction between object and subject that is developed according to a division between object and human, drawing on Martha Nussbaum’s claim that objectification occurs whenever ‘one is treating as an object what is really not an object, what is, in fact, a human being’.53 Twins not only are treated as or ‘blended’ with things but also are viewed as experimental bodies, composed of complex assemblages of cell lines, gene expression levels, methylation sites and microbial communities, to name just a few kinds of ‘matter’ that twin research has tried to articulate. Yet twins remain human subjects, a ‘human kind’ that is recruited and is given validation through twin research, while also realised in and through, and perhaps despite, the thingliness discovered in twin experiments. These are practices that not only render them technical objects in contemporary genomic research – beings that are measured, sampled, computed and ‘shared’ as part of a globally configured experimental apparatus – but also provide evidence for what Nikolas Rose has characterised as the ‘molecularization of vitality’. Rose argues that, with and among other things, contemporary scientific research has decomposed, anatomised, manipulated, amplified and reproduced the human body; articulated into ‘tissues, proteins, molecules, and drugs [. . .] to be regarded, in many respects, as manipulable and transferable elements or units, which can delocalised – moved from place to place, from organism to organism, from disease to disease, from person to person’.54 Here, the concept of animacy helps to locate a set of ethical, epistemological and ontological decisions, making a critical medical humanities approach to twins necessary and possible. We confront a crucial question that is shadowed by the use of twins in the 1930s, 1940s and 1950s, and the use of twins in the 2010s: should twins be defended against instrumentality, to safeguard an autonomous, lively, unique, unbreakable and free ‘human’, or can we depart from the scales of anthropocentric privilege that insist

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on human uniqueness? Breaking this scale, acknowledging the role of molecular life in and between human and other bodies, pursues the critical status of ‘the human’ whose material significance has yet to be fully understood. This question and the answers we might reach through it elicit the more risky task of understanding why twins come to matter in different ways and at different times. If animating twins permits a recalibration of what it means to instrumentalise bodies conceived at a molecular scale, then I join those working in both the human and natural sciences who are keen to challenge the strict partition between a human inner and non-human outer – to perforate ‘the exclusionary zone made of the perceptual operands of phenomenology’.55 By dismissing an ecoseparatism that thrives through plural cultures and a static, singular nature, I take the study of twins and associated animacies to open up different, transcorporeal, transobjective socialities. Mel Chen’s characterisation of molecular intimacy is based in processes of physical absorption and assimilation: ‘When physically co-present with others, I ingest them. There is nothing fanciful about this. I am ingesting their exhaled air, their sloughed skin, and the skin of tables, chairs, and carpet of our shared room.’56 I am both wary of the notion of physical co-presence being valorised and relied on here and how Chen’s human–non-human assemblies bear some similarity to Jane Bennett’s attempts to elevate ‘the shared materiality of all things’57 in order to stress how each human is ‘a heterogeneous compound of wonderfully vibrant, dangerously vibrant, matter’.58 As in Chen’s analysis, this vital materiality finds its force in accommodating and absorbing what is foreign. Bennett writes: Vital materiality better captures an ‘alien’ quality of our own flesh, and in so doing reminds humans of the very radical character of the (fractious) kinship between the human and the nonhuman. My ‘own’ body is material, and yet this vital materiality is not fully or exclusively human. My flesh is populated and constituted by different swarms of foreigners.59 We might characterise some of this object-oriented thinking as operating under what Chen calls the ‘xenobiotic’,60 where the argumentative thrust of these material ontologies, which borrow so much from the molecular perspectives of the biological sciences, follow particular trajectories of inclusion as they extend agency into the world by locating the non-human within. If there is one question that same-sex twins are asked by twin researchers and others, then it concerns the shared status of their vital materiality: ‘identical or non-identical?’ or ‘monozygotic or dizygotic?’. This is how twin bodies matter between molar and molecular scales, between ‘scientific’ and ‘non-scientific’ spheres. Barry Barnes and John Dupré remind us that despite the informatic metaphors of gene action – where ‘codes’ and ‘scripts’ are ‘read’ and ‘translated’ – ‘DNA is stuff, and we are able to relate directly to it and gain knowledge of it as such – where to find it, how to separate it off, how it behaves as material, and so forth [. . .] DNA is indeed a tangible material substance.’61 The longitudinal quality of much twin data means that recent studies of phenotypic resemblance of twins now concentrate on molecular variation

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across biological samples, providing functional insights into the underlying biology of heritable traits, helping to identify DNA sequence variants, epigenetic variation and metabolites as they respond to different environments.62 Though it is important to acknowledge that twin research profits from the promise as well as the realisation of such discoveries, it is equally important to resist the absolute collapse of inner and outer things – the rather lava-lamp-like materialism of the xenobiotic. Equally, modern constructions of twinship may share in and intersect with concepts of biosociality, as well as notions of biological or genetic citizenship, but not in the same way that all of these terms have become tied in certain literatures to the circulation of ‘disease, disfigurement or disability’.63 One does not become a twin in the same way that one might become infected or toxic; the fact that our ‘vital materiality’, as Bennett calls it, requires careful disaggregation according to its varying temporalities of action, expression and effect is precisely the cause for the recruitment of twins into scientific investigation. Twin by twin and measure for measure, the animate mattering of twins makes another perspective possible: one that does not let the molecular elide the molar or the biological serve as the prior foundation for the social, nor one that simply undermines the physicality of twin matter. Such a view promises to open up the thingliness of specific people that refuses biological essentialism and recognises how animate identities can be internally external, born and raised, materially and dynamically distributed within and between bodies.

Further Reading Barry Barnes and John Dupré, Genomes and What to Make of Them (Chicago: Chicago University Press, 2008). Mel Y. Chen, Animacies: Biopolitics, Racial Mattering, and Queer Affect (Durham, NC, and London: Duke University Press, 2012). Diane Cooke and Samantha Frost, New Materialisms: Ontology, Agency, and Politics (Durham, NC: Duke University Press, 2010). Jenny van Dongen, P. Eline Slagboom, Harmen H. M. Draisma, Nicholas G. Martin and Dorret I. Boomsma, ‘The Continuing Value of Twins in the Omics Era’, Nature Reviews Genetics 13 (2012), pp. 640–53. Jay Joseph, The Gene Delusion: Genetic Research in Psychiatry and Psychology Under the Microscope (New York: Algora, 2004). Maurizio Meloni, ‘Biology without Biologism: Social Theory in a Postgenomic Age’, Sociology 48.4 (2014), pp. 731–46. Nancy Segal, Entwined Lives: Twins and What They Tell Us About Human Behavior (New York: Putnam, 1999).

Notes 1. Stephen Jay Gould, The Mismeasure of Man (New York: W. W. Norton, 1996), p. 264. 2. For a history of the most influential modern study of twins reared apart, see Nancy Segal, Born Together – Reared Apart: The Landmark Minnesota Twin Study (Cambridge, MA: Harvard University Press, 2012).

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3. The Secret Life of Twins, Episode 1. TV. Dir. Diene Petterle. London: BBC, 30 September 2009. 4. See Ian Hacking, ‘Kinds of People: Moving Targets’, Proceedings of the Royal Academy 151 (2007), pp. 285–318. 5. Michael Rossi, ‘Consider Jack and Oskar’, London Review of Books 35.33 (2013), p. 28. 6. Yoon-Mi Hur and Jeffrey M. Craig, ‘Twin Registries Worldwide: An Important Resource for Scientific Research’, Twin Research and Human Genetics 16.1 (2013), p. 11. 7. See Jenny van Dongen, P. Eline Slagboom, Harmen H. M. Draisma, Nicholas G. Martin and Dorret I. Boomsma, ‘The Continuing Value of Twins in the Omics Era’, Nature Reviews Genetics 13 (2012), pp. 640–53. 8. Tim Spector, ‘The Use of Twins in Research’, BRC Biomedical Forum, Guy’s Hospital, 9 January 2013. 9. See Jordana Bell and Tim Spector, ‘A Twin Approach to Unraveling Epigenetics’, Trends in Genetics 27.3 (2011), pp. 116–25. 10. For an overview of the transition from transmission to genomic research, see Barry Barnes and John Dupré, Genomes and What to Make of Them (Chicago: Chicago University Press, 2008), pp. 1–18. 11. M. Susan Lindee, Moments of Truth in Genetic Medicine (Baltimore: The Johns Hopkins University Press, 2005), p. 124. 12. For an especially critical account of the history of twin research and a discussion of the methodological weaknesses of the classical twin method, see Jay Joseph, The Gene Delusion: Genetic Research in Psychiatry and Psychology Under the Microscope (New York: Algora, 2004), pp. 11–66. 13. For an overview of the many uses of twins in the field of behavioural genetics, from intelligence to addiction, chronic mental health conditions such as schizophrenia, sexual orientation and earning potential, see Lindee, Moments of Truth in Genetic Medicine, pp. 120–54. 14. Bruno Latour, ‘Why Has Critique Run Out of Steam? From Matters of Fact to Matters of Concern’, Critical Inquiry 30 (2008), pp. 225–48. 15. For a general introduction, see William Viney, ‘Curious Twins’, Critical Quarterly 53.2 (2014), pp. 47–58. 16. See Kimberley C. Patton (ed.), Gemini and the Sacred: Twins and Twinship in Religion and Mythology (London: I. B. Tauris, forthcoming); Philip M. Peek (ed.), Twins in African and Diaspora Cultures: Double Trouble, Twice Blessed (Bloomington: Indiana University Press, 2011); Véronique Dasen, Jumeaux, jumelles dans l’antiquité grecque et romaine (Zurich: Akanthus, 2005); and J. Rendell Harris, The Cult of the Heavenly Twins (Cambridge: Cambridge University Press, 1906). 17. John C. Waller, ‘Commentary: The Birth of the Twin Study – A Commentary on Francis Galton’s “The History of Twins” ’, International Journal of Epidemiology 41 (2012), p. 917. 18. Francis Galton, ‘The History of Twins as a Criterion of the Relative Powers of Nature and Nurture’, Fraser’s Magazine 12 (1875), p. 566. 19. In my view, Galton should be understood as both an innovator in biometrics and a highly skilled qualitative researcher. Galton mentions ‘around eighty’ respondents to his ‘circulars of inquiry’ (p. 566), though papers held in the Galton Archive, University College London, suggest he received more. See Nicholas Wright Gillham, A Life of Sir Francis Galton: From African Exploration to the Birth of Eugenics (Oxford: Oxford University Press, 2001), p. 193.

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20. Galton, ‘The History of Twins as a Criterion of the Relative Powers of Nature and Nurture’, p. 574. 21. For a discussion of how the notion of ‘sharing’ genes has been distorted in scientific communications, see Barnes and Dupré, Genomes and What to Make of Them, pp. 98–9. 22. Laura C. Ball and Thomas Teo, ‘Twin Studies’, in William A. Darity, Jr (ed.), The International Encyclopaedia of Social Sciences, 2nd edn (New York: Macmillan, 2008), p. 473. 23. Robert Plomin, John C. DeFries, Gerald E. McClearn and Peter McGuffin, Behavior Genetics, 5th edn (New York: Worth, 2008), p. 79. 24. Alison Cool, ‘Thinking with Models, Talking with Numbers: Twin Studies of Economic and Criminal Behavior in Sweden’, paper presented at the American Anthology Association Meeting, Montreal, Canada, 16 November 2011. 25. Evelyn Fox Keller, The Mirage of a Space Between Nature and Nurture (Durham, NC, and London: Duke University Press, 2010), p. 71. 26. Mel Y. Chen, Animacies: Biopolitics, Racial Mattering, and Queer Affect (Durham, NC, and London: Duke University Press, 2012), p. 167. 27. Ibid., p. 11. 28. Ibid., Animacies, p. 30. 29. Nancy Segal, ‘Twins: The Finest Natural Experiment’, Personality and Individual Differences 49 (2010), p. 317. 30. Tim Spector, ‘The Use of Twins in Research’. 31. Chen, Animacies, p. 42. 32. Segal, Born Together – Reared Apart, pp. 2, 10–11. 33. Nancy Segal, Entwined Lives: Twins and What They Tell Us About Human Behavior (New York: Putnam, 1999), p. 1. 34. Isabelle Stengers, Power and Invention: Situating Science (Minneapolis: University of Minnesota Press 1997), p. 88 35. Robert Plomin, ‘Commentary: Why Are Children in the Same Family So Different? NonShared Environment Three Decades Later’, International Journal of Epidemiology 40 (2011), p. 587. 36. For more on the distinction between ‘technical’ and ‘epistemic’ thing, see Hans-Jörg Rheinberger, Towards a History of Epistemic Things: Synthesizing Proteins in the Test Tube (Stanford: California University Press, 1997), pp. 28–9. 37. Quoted in Ilana Löwy, ‘The Experimental Body’, in Roger Cooter and John Pickstone (eds), Medicine in the 20th Century (Amsterdam: Harwood Academic, 2000), p. 435. 38. Bruno Latour, Pandora’s Hope: Essays on the Reality of Science Studies (Cambridge, MA: Harvard University Press, 1999), pp. 183–5. 39. Richard Rende, Robert Plomin and Steven Vandenberg, ‘Who Discovered the Twin Method?’, Behavior Genetics 20.2 (1990), p. 283. When comparing the two, they admit that Merriman ‘did not indicate that the comparison between identical and fraternal twin resemblance could be used to assess hereditary influences on a trait’. I find it hard to understand why Rende, Plomin and Vandenberg should then recommend that they and others in the field of behavioural genetics be led by the work of Merriman, who is also said to offer ‘the first explicit description of the twin method’ (p. 281). 40. Quoted in James Braund and Douglas G. Sutton, ‘The Case of Heinrich Wilhelm Poll (1877–1939): A German–Jewish Geneticist, Eugenicist, Twin Researcher, and Victim of the Nazis’, Journal of the History of Biology 41 (2008), pp. 21–2. 41. See Braund and Sutton, ‘The Case of Heinrich Wilhelm Poll (1877–1939)’, pp. 1–35.

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42. Quoted in ibid., p. 9. 43. See Heinrich Wilhelm Poll, ‘Über Zwillingsforschung als Hilfsmittel menschlicher Erbkunde’, Zeitschrift für Ethnologie 46 (1914), pp. 87–105. 44. Horatio H. Newman, Frank N. Freeman and Karl J. Holzinger, Twins: A Study of Heredity and Environment (Chicago: University of Chicago Press, 1937), p. 19. 45. Hans-Walter Schmuhl, The Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics, 1926–1945: Crossing Boundaries (Berlin: Springer, 2008), pp. 60–8. 46. Sheila Faith Weiss, ‘Race Hygiene in Germany’, Osiris 3 (1987), p. 230. For how twin research was used to establish the evidential basis for policies of genetic hygiene in a number of national contexts, see Volker Roelcke, ‘Eugenic Concerns, Scientific Practices: International Relations and National Adaptations in the Establishment of Psychiatric Genetics in Germany, Britain, the USA, and Scandinavia 1910–1960’, in Björn M. Felder and Paul J. Weindling (eds), Baltic Eugenics: Bio-Politics, Race and Nation in Interwar Estonia, Latvia and Lithuania (Amsterdam: Rodopi, 2013), pp. 301–34. 47. See Carola Sachse and Benoit Massin, Biowissenschaftliche Forschung an KaiserWilhelm-Instituten und die Verbrechen des NS-Regimes: Informationen über den gegenwärtigen Wissensstand (Berlin: Max-Planck Society for the History of Science, 2000); and Schmuhl, The Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics, 1926–1945, pp. 362–70. 48. Oliver Mayo, ‘Early Research on Human Genetics Using the Twin Method: Who Really Invented the Method?’, Twin Research and Human Genetics 12.3 (2009), p. 237. 49. Thomas Teo and Laura C. Ball, ‘Twin Research, Revisionism and Metahistory’, History of Human Science 5 (2009), p. 11. 50. Latour, ‘Why Has Critique Run Out of Steam?’, p. 227. 51. See William Viney, Felicity Callard and Angela Woods, ‘Critical Medical Humanities’, Medical Humanities 41.1 (2015), pp. 2–7, and Fitzgerald and Callard in this volume, pp. 35–48. 52. Chen, Animacies, p. 40. 53. Martha Nussbaum, ‘Objectification’, Philosophy and Public Affairs 24.4 (1995), p. 257. 54. Nikolas Rose, The Politics of Life Itself: Biomedicine, Power, Subjectivity in the Twenty-First Century (Princeton: Princeton University Press, 2007), pp. 13, 15. 55. Chen, Animacies, p. 209. 56. Ibid. 57. Jane Bennett, Vibrant Matter: A Political Ecology of Things (Durham, NC: Duke University Press, 2009), p. 13. 58. Ibid., pp. 12–13. 59. Ibid., p. 112 60. Chen, Animacies, p. 208. 61. Barnes and Dupré, Genomes and What to Make of Them, p. 64. 62. Dongen et al., ‘The Continuing Value of Twins in the Omics Era’, p. 650. 63. Rose, The Politics of Life Itself, p. 137.

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6 PAPER TECHNOLOGIES, DIGITAL TECHNOLOGIES: WORKING WITH EARLY MODERN MEDICAL RECORDS Lauren Kassell

Introduction s the digital revolution takes hold, historians have begun to reflect on the ways in which paper technologies – the codex, notebook, printed book and their indexes, annotations and tools of ordering – have come into being and contributed to the production of knowledge. Objects that were once considered evidence for historical inquiry have become their subjects.1 The same reflexivity applies to notions of evidence, observation and objectivity, often labelled as facts and data, which have themselves been historically studied.2 This chapter is about what happens when historians use digital technologies to understand paper technologies. It draws on my work to digitise one of the largest surviving sets of medical records in history, a series of 80,000 seventeenth-century astrological cases bound in sixty-four thick volumes. I call this the Casebooks Project. This work, as this chapter explains, is an experiment in the history of medicine and digital humanities.3 It uses new digital technologies to understand what were, in the seventeenth century, new paper technologies. Questions of evidence and its representation and analysis are central to this endeavour. Just as the processes that produced the written documents – in this case, a series of medical encounters – shaped habits of talking and listening, thinking and remembering, reading and recording, so the processes of digitising these records – photographing, transcribing, coding – produce meaning. Digitising the manuscript records does not make them instantly meaningful. The major challenge for the Casebooks Project is to render the historical documents and the encounters they record in forms that are true to the seventeenth-century archive and intelligible to twenty-firstcentury readers. The records are by definition open to multiple uses and interpretations, and the project aims to retain a sense of play within the records while preserving their technical and analytic complexities and tutoring users in the critical skills to understand them. As a social historian of medicine and a historian of science, I borrow from microhistory and anthropology, focus on immediate and often mundane ritualised dynamics, and ask fundamental questions about what constitutes knowledge and how meaning is

A

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produced. The problematic of ‘naturalisation’, which endows knowledge, objects and bodies with inherent and fixed value, informs this work. My questions and theoretical stance speak to concerns in the field of critical medical humanities, while my methods and sources are firmly rooted in historical practices. The casebooks are deliberately at the centre of my analysis; at each juncture we need to ask how these documents came into being and what they represent, in their material and digital forms. This prompts, in the first part of this chapter, a historical assessment of what constitutes a seventeenth-century medical record. Casebooks, as we will see, document medical encounters and potentially record patient voices, but they do not necessarily contain narratives of illness. The second part of this chapter reflects on the casebooks as evidence for past experiences of illness and practices of healing, and the potentials for using digital tools to study them. Building on the arguments from the emerging fields of digital humanities and using lessons from the Casebooks Project, in the final part of the chapter I will argue for the importance of attending to the materiality of the sources when using digital tools and for the need to subject digital visualisation techniques to the same critical assessment as other forms of evidence. Computer-generated data may be quantitatively robust, but they are not inherently certain or self-evidently meaningful. They require analysis just like any other artefact. Yet the way in which these data are produced, through teams of researchers and computers, and the forms that they take – percentages, tables, charts – potentially lead to the reification or fetishisation of this material, rather than its assessment according to critical standards. Data and voice, list and narrative, calibration and feel are as much a feature of early modern records of medical encounters as they are in the work of historians of medicine.

What Was a Medical Record? Doctors have not always kept records. The practice was invented by Hippocrates, the ancient father of medicine, lost for more than a thousand years, and rediscovered in sixteenth-century Italy by doctors who modelled themselves on their ancient forebear. Hippocrates wrote on clay tablets, sixteenth-century doctors wrote on paper, and their shared habits provide an origin myth that locates the medical record as a defining feature of rational medicine. Narrating illnesses and documenting encounters were often, but not always, features of these records. I will return to questions about medical encounters and illness narratives, and their place in the history of medicine and medical humanities, below. First I want to sketch a history of medical records that situates them not in terms of their ancient lineage but within the history of ‘paper technologies’.4 When doctors began keeping records in the middle of the sixteenth century, they typically recorded cases in notebooks, participating in larger trends amongst merchants and scholars to record information and to organise knowledge in forms that were systematic and novel.5 This was the first age of ‘information overload’, and notebooks were one tool for making order.6 In the second half of the seventeenth century,

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early modern virtuosi developed methods for cultivating memory as well as keeping notebooks. They modelled their techniques on those of ancient authorities and humanistic scholars, and transformed them into long-term enterprises of data collection and collaborative study.7 Notes and notebooks followed conventions, but the habits of speech, writing and collecting that produced them were also idiosyncratic.8 Early modern medical practitioners, with the exceptions of those who worked in hospitals and other charitable foundations, worked in private practice. They conducted consultations in person, often in the patient’s home, or through messages or letters. Those who chose to record their cases borrowed forms of diaries, registers or testimonials. It was typical to note the patient’s name, age, complaint, its causes, a prescription or a payment. Some practitioners made mental or rough notes, perhaps even on erasable wax tablets,9 as the basis for a full record that would be written up at the end of the day. Some only recorded particularly extraordinary cases, and others kept diaries of all of their cases, producing a serial record of practice. These serial records of practice are what have come to be called casebooks.10 Whether these records took the form of diaries, registers or testimonials, often they were later ordered, through indexing or commonplacing, by patient, disease or cure, providing the basis for medical observations, sometimes printed as a testimony to a doctor’s expertise as well as his contribution to the advancement of learning. Observation, as Gianna Pomata has argued, formed an ‘epistemic genre’, meaning a ‘style of knowing’ rooted in a particular scholarly form.11 By the late seventeenth century, the practice of keeping records had become more common, though not necessarily more codified. Medical observations constructed narratives, registers produced lists and tables, and all forms of early modern medical records followed conventions and formulae.12 Recent scholarship has considered sixteenth- and seventeenth-century doctors’ resurgent interest in constructing particular cases and cures, and the shift from cases demonstrating a physician’s successful cure to cases written with attention to the patient and the disease.13 More work needs to be done on the systematic records of diseases that developed into Baconian medicine, most notably by Thomas Sydenham, known as the English Hippocrates. Shifting the emphasis from epistemology to practice, in a study that surveys the extant early modern English casebooks together with practitioners’ reflections on their record-keeping practices, I have argued that the processes of record-keeping were integral to medical consultations, even when the notes were recorded after the fact. As ritualised displays and embodied knowledge, casebooks shaped the medical encounters that they recorded. The techniques and technologies that produced casebooks, from memoranda to printed observations, are as much a part of the history of medicine as the encounters that they document.14 A couple of decades after Italian doctors began to record their practices, Simon Forman, a self-taught London astrologer, started the first of a series of notebooks that would become one of the largest surviving sets of medical records in history. He taught his art to Richard Napier, a Buckinghamshire divine, and together they and their assistants recorded 80,000 consultations between 1596 and 1634. The majority concern questions about health and illness. These casebooks were produced

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during the consultation, which typically took place in the astrologer’s study, where he received his clients or their messages. The astrologer recorded the patient’s name, age, sex, address and the question asked in his open notebooks. Next, he cast an astrological chart, mapping the position of the stars at the moment when the question was asked. This informed his judgement of the cause of the disease, along with ancillary, and often competing, evidence from the patient’s account (‘she supposeth’) and other signs. Some cases also include details of prescribed treatments and payments received. Forman followed this routine until his death in 1611, though not all of his casebooks survive, and Napier continued until 1634, producing a complete run of his forty-year practice.15 We do not know for certain why Forman and Napier recorded such systematic records, nor why they retained them. We do know that because the astrologers needed to cast a chart for the moment at which the question was asked or the message arrived, they worked with a pen in hand; this may have fuelled their writing habits. We also know that the astrologers were participating in broader trends to produce, retain and reuse various forms of written records. The systematic nature of Forman’s and Napier’s casebooks, and their massive scale, led me to design a project to digitise them. I had thought that digital tools would provide a means of mastering the evidence in this unwieldy archive. Instead I have found that working with digital technologies raises as many questions about historical evidence as it answers. Paper technologies teach us about digital technologies, and vice versa. Before explaining the project and its lessons, we need to consider the promise that medical records in general, and Forman’s and Napier’s records in particular, have held for the history of medicine.

Medical Records and the History of Medicine Medical records began to be used by historians of medicine in earnest in the 1980s, with the rise of social history and the turn to the patient. Calls for the history of medicine to include all aspects of medical provision, including patient’s experiences, had been issued at least from the 1930s.16 But, as Flurin Condrau has sketched, a pair of seminal articles on the patient – one by Roy Porter, a medical historian, the other by David Armstrong, a medical sociologist – were published in the 1980s, coinciding with increasing social, political and medical concern about patients’ rights.17 Porter’s ‘The Patient’s View: Doing Medical History from Below’ (1985) centres on Samuel Pepys, the great seventeenth-century diarist, to argue for a shift to the patient’s perspective, largely through forms of life-writing.18 Armstrong’s similarly titled ‘The Patient’s View’ (1984) proposed a very different methodology, following the writings of Michel Foucault, which posited the patient as a medical construct.19 While agreeing that the patient was an important subject of study, Porter and Armstrong present competing views about what such a history entailed. For Foucault, the clinical gaze of eighteenth-century hospital medicine produced the medical subject. This is part of a larger history of the body as a site of knowledge

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and power, often understood in terms of biopolitics and governmentality. The shift from a pre-modern to a modern, medicalised subjectivity that Foucault hypothecated was schematised by Nicholas Jewson, another sociologist, in an essay published in 1976. Building on Erwin Ackerknecht’s writings about what doctors do, Jewson charted the modes of production of medical knowledge, positing the ‘disappearance of the sick man’ with the transitions from bedside to hospital to laboratory medicine in the decades between 1770 and 1870. Bedside medicine perceived the sick man as a person and listened to his ‘verbal analysis of subjectively defined sensations and feelings’, hospital medicine saw him as a case to be classified through physical examination of observable organic structures, and laboratory medicine used remote techniques to assess not a person, but a complex of cells. In this scheme, the medical encounter took a variety of forms, each establishing a different dynamic between patients and practitioners. The patient’s narrative, what Jewson calls his ‘self report of the course of his illness’, only featured in bedside medicine. Without reflecting explicitly on the nature of paper technologies, as would historians in later decades, Jewson credited hospitals with producing systematic and quantifiable case records and, from them, collections of observable data.20 Porter conceptualised patients differently. Patients and practitioners were part of a system, and ‘sufferers’ articulated their experiences in diaries and autobiographies. He dismissed Foucauldian analysis as ahistorical and advocated instead, in a tradition of Marxist history, empirical work to find and study repositories of lost voices. For the sociologically and anthropologically minded, the problem with the patient’s voice was not simply that it was lost, but also that it was always a discursive construct. These discussions, as Condrau notes, had little methodological purchase in the history of medicine. Studies either focused on medical practice, sidestepping the silent patient as an unknowable construct, or uncritically unearthed the sufferer from the archives. Two important works that focus on the evidence of the patient’s experiences of illness and healing in medical records – Michael MacDonald’s Mystical Bedlam: Madness, Anxiety and Healing in Seventeenth-Century England (1981) and Barbara Duden’s The Woman beneath the Skin: A Doctor’s Patients in Eighteenth-Century Germany (1991 [1987]) – complicate this picture, as will be discussed in the next section. None the less, as Condrau suggests, historians of medicine need critically to reassess the old categories of patient, knowledge and disease. Where historians of medicine have failed to address conceptual problems about how to study the patient, in other fields the patient and narratives of illness and healing have become central concerns. Within medical humanities, in the language of the editors of this volume, the medical encounter assumed the status of a ‘primal scene’. The merits of understanding the medical encounter as a site that produces narratives of illness and healing, and of fostering an ethical imperative to cultivate the patient’s voice, are now debated. One aspect of the debates centres on whether narrative is an inherent human response or a conventional construct, shaped by historical and cultural forces, distinct from subjective experience, and itself a product of the hegemony of naturalising biomedical sciences.21 From my perspective, narrative practices and

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meanings themselves have histories, rooted in Judeo-Christian models of the body as a hydraulic system vulnerable to corruption and cleansed through confession and exorcism.22 Just as narrative needs to be historicised, so the medical encounter needs to be understood within a broader history of the social and cosmological dynamics of healing. Models of the medical encounter that postulate a shift from doctors who listen to their patients to doctors who do not, it seems to me, fail to account for the complex of signs, verbal, physical, social and cosmological, within which illness and healing have so often been inscribed. The astrologer physicians, as we will see, listened to a patient’s question and judged the causes of the disease from the positions of the stars. They also noted when evidence from the patient’s body or report told a different story. With the turn to the patient in the 1980s, casebooks, like letters, diaries and other ego-documents, promised a bottom-up view of illness and healing.23 The books by MacDonald and Duden held out much promise for the use of medical records and the related genre of medical observations to write fresh histories of medicine. MacDonald’s Mystical Bedlam centres on the records of madness in Napier’s casebooks. Duden’s The Woman Beneath the Skin studies the multi-volume observations on the diseases of women by Johann Storch, an early eighteenth-century German physician. While Napier’s casebooks were formulaic and chronologically ordered, Storch’s presented a synoptic view of the women’s cases, juxtaposing the events that the women recounted to him with stories from other sources. Duden recovers a form of medical encounter in which illness and women’s bodies were socially located, known to the women and accessible to the doctor through their spoken words and bodily signs. As Duden comments on MacDonald’s work, it shows ‘the presence of a body internally undivided and externally unbounded’, a precursor to ‘[t]he “body” as a discrete object of social control’. Storch and Napier, though working almost a century apart and in different locales, similarly documented an era before the natural body had taken shape. This was a moment in history when, to extrapolate Duden’s argument, doctors’ writing could be embodied.24 Casebooks and observations seemed ideally suited to MacDonald’s and Duden’s methodological imperatives to study the body as a discursive formation. In a brief preface to Mystical Bedlam, MacDonald acknowledges his debt to Foucault. He did not set out to rewrite Madness and Civilization ‘in plain and tangible form’. Rather, he tried to discover how ‘popular beliefs about insanity and healing illuminate the mental world of ordinary people’. While Foucault echoes the sound and fury in writings by intellectuals and officials, MacDonald, through the mass of data in Napier’s casebooks, recovers the plight of ‘2000 obscure rustics’.25 His evidence is mundane and ordinary, and he uses innovative computational techniques alongside discursive analysis to understand it. MacDonald’s and Duden’s works heralded the possibilities of using documents produced within a medical encounter to understand the social and cultural practices through which minds and bodies are defined. Yet thirty years later, Roger Cooter lamented that, although the social history of medicine in the UK was thriving at the

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institutional level, the discipline was intellectually moribund. It was failing to address the conceptual challenge at its core: ‘medicine objectified the body, history objectified the past.’ In their efforts to historicise the patient, Cooter argues, historians of medicine reified the body.26 The critical lessons of MacDonald and Duden had not been heeded, while medical records continued to be promoted as a vital source for the history of medicine. In 1992, Guenter Risse and John Harley Warner challenged historians of medicine to make full use of patient records to study the dynamics of medical practice and, where possible, to recover patients’ voices mediated through practitioners’ pens. They began with Ackerknecht’s 1967 call for ‘behaviourist’ studies of medical therapeutics, through case histories, and note that it had taken two decades for such work to take root. They define the variety of documents, both personal and institutional, that constitute medical records: case histories, clinical charts, patient notes. Medical records from the sixteenth and seventeenth centuries, including Napier’s, are noted in their account, but their discussion centres on the late eighteenth century onwards. They note that these records are rich with quantitative and qualitative – data and narrative – material, and caution that they should not be read as clear, objective chronicles or unmediated accounts of patient experiences. Case histories, they stress, were narratives, written within analytic frameworks that are themselves politically, ideologically and personally specific.27 With these provisos, they detail the opportunities for using medical records to study the histories of medical practice, the demographics of disease, social and cultural difference and healing, and the relation between medical practices and scientific ideas. Warner revisited the topic in 1999, reiterating the link between an interest in patient records and the more general trends amongst historians to study practice, to attend to narrative, and to identify new historical sources, and he urged historians to consider the form that such records take as part of the project of studying their contents.28 The first task for anyone who wants to use medical records is to recognise that they are a form of writing with a distinct history. Medical records range in form from lists of repeated categories of data to various sorts of narratives. As bundles of data, they can be readily quantified, providing apparently objective statistics about patient demographics and categories of disease. Casebooks and computing, Risse and Warner note, have long been associated. Their quintessential historian, in the persona of MacDonald, risked being buried under mountains of computer printouts. As a pioneer of historical computing, he used punched notecards, knitting needles and a mainframe computer to calculate data from a sample of 2,000 cases of patients suffering from forms of mental disorders. His student, Ronald Sawyer, followed him, studying the disease profile of Napier’s medical practice as a whole through sampling successive months in successive years: for example, January 1601, February 1602 and so on.29 Napier’s casebooks contain countable data, and they record narrative sequences, often expressed in terms of causal events. These records were framed within conventions of writing narratives and collecting data; they are not, as we will see, unmediated records of experiences of illness and healing.

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The Casebooks Project is inspired by MacDonald’s methods. It is also motivated by Porter’s call for the recovery of lost voices and informed by Duden’s challenge to the natural body. MacDonald used a mainframe, in my initial work on Forman I used a laptop and a spreadsheet,30 the Casebooks Project uses XML and programs for processing its data and metadata. This is an example of what Tim Hitchcock has referred to as the use of computers to address the ‘human contents’ of the past, to recover the voices of ordinary people, which are lost to conventional historical scholarship.31 The rest of this chapter is about the lessons of using digital technologies to make sense of the astrologers’ paper technologies.

Digitising Medical Records How do we understand a series of 80,000 consultations ordered only, and not always, by the sequence of minutes, hours and days on which they were recorded? They are systematic records, detailing data about thousands of patients, and they are extensive, often heart-wrenching or baffling traces of exchanges between patients and practitioners, sometimes extending across decades and encompassing families and households. They require quantitative tools to navigate their expanse, and qualitative understanding to interpret their meaning. For each case, the Casebooks Project transcribes the question, and codes details about the full record. The edited text for each entry ranges from five to fifty words, with metadata to record the attributes and extensive details of the case and thereby allow users to draw systematically on the content of the edition. This is work in progress. When it is complete, the edition will contain the edited question from all 80,000 consultations, filling an estimated 3.5 million words, coded with roughly six times this much metadata. The edition also includes an image archive of the full run of manuscripts of the casebooks. The edition is mounted on an open-access website that contains introductions to the manuscripts, guides to reading the texts and searching the edition, and information about the astrologers and their recordkeeping practices, along with detailed editorial guidelines. Our full data, marked up in XML, can also be downloaded.32 Casebooks produces data and text, and it, like a number of other projects, sits at the interface between innovative digital humanities and traditional textual editing.33 It is also born of new kinds of work. Instead of sitting in a library and writing a book, I have designed a project, secured a grant and assembled an expert team who are coding the data and producing a digital edition.34 Without Michael Hawkins, Robert Ralley, John Young and, from 2014, Joanne Edge, Janet Yvonne Martin-Portugues and Natalie Kaoukji, this work would not be possible. Our audiences are defined as users, not readers, and one of the challenges of the project is to tutor them in engaging critically with the casebooks. In working on the Casebooks Project, two questions about evidence have come to the fore. What does it mean to render textual material, which is three-dimensional, analogue and often narrative, into a digital format? This process has the potential

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to draw attention to, rather than to efface, the material nature of the original artefact: in this case a volume of bound manuscript notebooks. With digital tools we can navigate this expanse of papers from our desks. Implicit in this metaphor of visual manœuvrability is the second question. Digital technologies allow us to amass and manipulate large quantities of data with relative ease. The dominant mode for expressing this is in visual maps, charts or other tools. What does it mean to be able to see data? These questions about the form of evidence and its representation and manipulation are as important for medical history and medical humanities as they are for digital history and digital humanities.

Materiality A skeuomorph is something that copies the design of an object in a new material while preserving the appearance of the original fabrication, like a wood-effect melamine desk.35 The word was coined more than a century ago, and in recent decades has been appropriated and adapted (some say erroneously) to refer to the use of visual metaphors in computer interfaces. The ‘keyboard’ on a digital tablet is an example. Skeuomorphic design is controversial, and may have cognitive and intuitive import as well as being a matter of taste. As designs for games that emulate the feel of paper show, it is not just historians who have a fetish for dry, flat, word-laden things.36 The digital is not the enemy of the material. The rise of digital technologies has coincided with an increasing reflexivity about the nature of visual evidence and material objects. Part of the project of cultural history, driven by anthropological inquiry, is to consider the ritual of past practices. For historians, this requires imagining past scenarios, peopled with actors whose voices are now silent and furnished with props that are long since lost. Material artefacts, including written words and the books, manuscripts and other artefacts that contained them, increasingly have come to be seen as objects of social as well intellectual exchange; sources of knowledge, from cheap print to family archives, are themselves objects of inquiry. Much of the history of books and readers charts the ways in which ordinary, often anonymous, people make use of books. An artefact such as a book with writing in the white spaces of the margins and endpapers is often the sole testament of a set of past practices.37 Materiality enacts and embodies processes. For critical scholarship it needs to be understood, as Katherine Hayles argues, as ‘the interplay between a text’s physical characteristic and its signifying strategies’. Materiality provides connections – across time and space, between the physical and the mental, from artefacts to users.38 Where digital tools are being used for scholarly editing, they follow a long tradition of attention to the physical characteristics of texts in many forms. Techniques of digital collation, for instance, are being developed.39 And as digital tools have begun to capture images as well as text, digital editors have come to understand – as analogue editors have known for a long time – that editing makes the material nature of texts all the more evident. Editing converts a text, it changes it, and in every conversion

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something is lost and something is gained. As Andrew Prescott says, using digital technologies does not mean losing your soul in a sea of data.40 Digital tools provide a means of capitalising on the materiality of the sources that they treat. Each digital humanities project has its own story about the relationship between the digital production and the material artefacts from which they derive. Many digital editing projects, like conventional printed editions, do not contain images of the original sources. This is usually a pragmatic constraint, dictated by the costs of imaging as well as the wishes of the owners of the records. Projects based in libraries or archives, in contrast, are object-centred, often producing digital surrogates of texts.41 Whatever form a project takes, digitisation shapes volumes and collections, rendering something made of paper, ink and other materials into something seen and manipulated on a screen. Forman’s and Napier’s casebooks fill 30,000 pages, now bound in sixty-four volumes. They are the residue of oral and written transactions for which no other evidence survives. When Elias Ashmole collected and bound the astrologers’ papers and gifted them as part of a collection to the University of Oxford, the casebooks became static monuments of the events that produced them. The astrologers filled their notebooks, hour by hour, day by day, and, accordingly, their records follow daily routines, seasonal calendars and celestial motions. The only order to these records is their daily sequence, into which the astrologers’ and their clients’ habits are inscribed. Breaks, repetitions, insertions in the sequence carry meaning about these patterns of behaviour and about the astrologers’ recording practices. The casebooks chart chronological, lived time, and they embodied forms of written, social time; often, but not always, they coincide.42 The edition captures both kinds of time, preserving the order of the cases in which they were written and the events that they record.43 The project makes it possible to read the cases according to their sequence on the page, following the astrologer’s calendar and habits. It also allows the cases to be read by date, following the events in the lives of the astrologers and their clients. Through the digital edition, we can see the orders of time that bound medical encounters.

Visualising Data To see across time is a metaphor. Visual tropes are fuelled by digital technologies, and visual evidence is now at a premium. Digital work allows us, at our computers, to see old books, either as poor facsimiles from microfilms or in high-resolution images reconstituted into books to be leafed through in an image reader. We can see a seventeenth-century library and the streets of Elizabethan London reconstructed.44 We can even, in a rare and much-needed effort to move beyond the visual, hear a seventeenth-century sermon.45 Meaning is conveyed in how things look, but seeing is not knowing or understanding. Seeing, like reading, is a critical skill that needs to be cultivated. Personal computers, through access to vast amounts of information, have fostered a culture of what we might call pseudomniscience, a false sense that we have total knowledge.46 Pseudomniscience risks degrading knowledge to information and

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corroding critical scholarship. One of the challenges for digital humanities is to ensure that features that are impressionistic become analytically operable. Visual tropes, as mapmakers, statisticians and demographers have long known, need to be used with the same critical attention as other forms of evidence. Yet, as Joanna Drucker has argued, the standard data visualisation tools used within digital humanities are borrowed from the natural and social sciences. These carry with them assumptions about objective and certain evidence. Data, Drucker argues, presume a scientific lens, and instead we should recognise that in the humanities we are dealing in ‘capta’, evidence that is taken and constructed, not, like data, given. Observation and experience produce ambiguity and uncertainty, and we need a graphics that captures these qualities.47 Drucker’s argument includes work on semantic analysis, and provides a framework for understanding the evidence produced by corpus and computational linguists using data mapping, text mining and other forms of semantic analysis.48 Old fashioned, sentence-by-sentence, ‘intrinsic’ reading is qualitative; ‘extrinsic’ reading produces data about the occurrence of words and phrases. Data, of course, have a history, and the danger of Drucker’s distinction between data and capta is that by distinguishing between evidence that is given and evidence that is taken, she undermines her argument that all data are in fact capta. The concept of data itself has a rhetorical function, evident, Daniel Rosenberg argues, in the history of the English term. ‘Data’ came into usage in the mid-seventeenth century and shifted connotation in the eighteenth, ‘from those things that are outside of any possible process of discovery to being the very paradigm of what one seeks through experiment and observation’.49 I began to interrogate the meaning of visual tropes and of graphical displays of data as I began to reflect on the ambition of the Casebooks Project to enable users to search and navigate the full corpus of records, to zoom in on a particular individual, community, cohort, or topic of question, and zoom out to situate such findings in relation to the full corpus of data. The process of editing Forman’s and Napier’s casebooks was turning them from data inscribed on a page within an astrological system into digital data coded according to categories intended to represent the social and medical experiences of the astrologers and their clients. Visual representations – maps, charts – would render arcane astrological manuscripts into meaningful evidence for the writing of history. The danger, however, was that data visualisation would privilege the quantitative over the qualitative and the certain over the uncertain, and undermine the nature of the records as documents produced as part of a series of medical encounters that enacted somatic and stellar correspondences and captured data and voice every time someone asked the astrologer, ‘What is my disease?’ The Casebooks Project is an experiment in using digital technologies to understand paper technologies. Like a conventional editing project, it centres on a textual artefact. It situates Forman’s and Napier’s casebooks within early modern conventions of writing and recording. It participates in established traditions of scholarly editing and new practices of digital editing. It engages with concerns amongst

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historians and sociologists of medicine about the history of the patient, the medical encounter and illness narratives. It asks fundamental questions about the kinds of evidence – data and narrative, quotation and graph – that can be used to write histories of medicine. It does all of these things in an effort to make these inscribed products of the medical fortunes of thousands of people in the past accessible and meaningful, enabling its users to navigate the somatic and social worlds of 400 years ago, and tutoring them in the kinds of critical questions that one can now ask of these extraordinary documents.

Acknowledgements Work towards this chapter was supported by the Wellcome Trust through a Programme Grant for the Casebooks Project [090619] and a Strategic Award on Generation to Reproduction [088708].

Further Reading Flurin Condrau, ‘The Patient’s View Meets the Clinical Gaze’, Social History of Medicine 20 (2007), pp. 525–40. Roger Cooter, ‘After Death/After-“Life”: The Social History of Medicine in Post-Modernity’, Social History of Medicine 20 (2007), pp. 441–64. Lorraine Daston and Elizabeth Lunbeck, Histories of Scientific Observation (Chicago: University of Chicago Press, 2011). Johanna Drucker, ‘Humanities Approaches to Graphical Display’, Digital Humanities Quarterly 5 (2011). Lisa Gitelman (ed.), ‘Raw Data’ is an Oxymoron (Cambridge, MA: MIT Press, 2013). Volker Hess and J. Andrew Mendelsohn, ‘Case and Series: Medical Knowledge and Paper Technologies, 1600–1900’, History of Science 48 (2010), pp. 287–314. Ludmilla Jordanova, ‘Historical Vision in a Digital Age’, Cultural and Social History 11 (2014), pp. 343–8. Lauren Kassell, ‘Casebooks in Early Modern England: Medicine, Astrology and Written Records’, Bulletin of the History of Medicine 88 (2014), pp. 595–625. Andrew Prescott, ‘An Electric Current of the Imagination: What the Digital Humanities Are and What They Might Become’, Journal of Digital Humanities 1 (2012). John Harley Warner, ‘The Uses of Patient Records by Historians – Patterns, Possibilities and Perplexities’, Health and History 1 (1999), pp. 101–11.

Notes 1. Ann M. Blair, Too Much to Know: Managing Scholarly Information before the Modern Age (New Haven, CT: Yale University Press, 2010); Ann Blair and Richard Yeo (eds), Notetaking in Early Modern Europe, a special issue of Intellectual History Review 20 (2010). 2. Lorraine Daston and Peter Gallison, Objectivity (Cambridge, MA: MIT Press, 2010); and Lorraine Daston and Elizabeth Lunbeck, Histories of Scientific Observation (Chicago: University of Chicago Press, 2011).

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3. Lauren Kassell (ed.), with Michael Hawkins, Robert Ralley and John Young, The Casebooks Project: A Digital Edition of Simon Forman’s and Richard Napier’s Medical Records, 1596–1634 (). I use the word experiment deliberately. As Natalie Cecire argues, there are echoes of the epistemological debates about doing and knowing amongst early modern experimental philosophers in current concerns in digital humanities between working on a keyboard (‘hacking’) and talking about that work (‘yacking’): Natalie Cecire, ‘Introduction’ and ‘When Digital Humanities was in Vogue’, Journal of Digital Humanities 1 (2011). For reflections on the historical uses of digital humanities, see Tim Hitchcock, ‘Academic History Writing and its Disconnects’, Journal of Digital Humanities 1 (2011); Tim Hitchcock, ‘Confronting the Digital: Or How Academic History Writing Lost the Plot’, Cultural and Social History 10 (2013), 9–23; Tim Hitchcock, ‘Big Data for Dead People’ (accessed 9 December 2013). 4. The term comes from Anke te Heesen, ‘The Notebook. A Paper Technology’, in Bruno Latour and Peter Weibel (eds), Making Things Public: Atmospheres of Democracy (Cambridge, MA: MIT Press, 2005), pp. 582–9. 5. Volker Hess and J. Andrew Mendelsohn, ‘Case and Series: Medical Knowledge and Paper Technologies, 1600–1900’, History of Science 48 (2010), pp. 287–314; Lauren Kassell, ‘Casebooks in Early Modern England: Medicine, Astrology and Written Records’, Bulletin of the History of Medicine 88 (2014), pp. 595–625; Richard Yeo, Notebooks, English Virtuosi, and Early Modern Science (Chicago: Chicago University Press, 2014), esp. pp. 91–3. 6. Blair, Too Much to Know; Blair and Yeo, Note-taking in Early Modern Europe. 7. Yeo, Notebooks, English Virtuosi, and Early Modern Science. 8. See, for instance, Isabelle Charmantier and Staffan Müller–Wille, ‘Carl Linnaeus’s Botanical Paper Slips (1767–1773)’, Intellectual History Review 24 (2014), pp. 1–24. 9. Peter Stallybrass, Roger Chartier, J. Franklin Mowery and Heather Wolfe, ‘Hamlet’s Tables and the Technologies of Writing in Renaissance England’, Shakespeare Quarterly 55 (2004), pp. 379–419, esp. p. 403. 10. Kassell, ‘Casebooks in Early Modern England’. 11. Gianna Pomata, ‘Observation Rising: Birth of an Epistemic Genre, c. 1500–1650’, in Daston and Lunbeck (eds), Histories of Scientific Observation, pp. 54–66. 12. Hess and Mendelsohn, ‘Case and Series’. 13. Jole Agrimi and Chiara Crisciani, Les Consilia médicaux, trans. Caroline Viola. Typologie des sources du Moyen Age occidental, no. 69. Institut d’Études Médiévales, Université Catholique de Louvain (Turnhout, Belgium: Brepols, 1994); Chiara Crisciani, ‘Histories, Stories, Exempla, and Anecdotes: Michele Savonarola from Latin to Vernacular’, in Gianna Pomata and Nancy Siraisi (eds), Historia: Empiricism and Erudition in Early Modern Europe (Cambridge, MA: MIT Press), pp. 297–324, esp. 309–11; Gianna Pomata, ‘Praxis Historialis: The Uses of Historia in Early Modern Medicine’, in Historia, pp. 105–46, esp. 122–36; Nancy Siraisi, History, Medicine, and the Traditions of Renaissance Learning (Ann Arbor: University of Michigan Press, 2007), Ch. 2. 14. Kassell, ‘Casebooks’. 15. The second most extensive surviving set of early modern English medical records was by Theodore de Mayerne, the famous Huguenot and royal physician. He filled 3,000 pages with elaborate narratives of roughly 1,000 cases from 1603 to 1653, probably half his total practice: Brian Nance, The Art of Medical Portraiture: Turquet de Mayerne as Baroque Physician (Amsterdam: Rodopi, 2001).

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16. Charles Webster, ‘Medicine as Social History: Changing Ideas on Doctors and Patients in the Age of Shakespeare’, in Lloyd G. Stevenson (ed.), A Celebration of Medical History (Baltimore: The Johns Hopkins University Press, 1982), pp. 103–26. 17. Flurin Condrau, ‘The Patient’s View Meets the Clinical Gaze’, Social History of Medicine 20 (2007), pp. 525–40. 18. Roy Porter, ‘The Patient’s View: Doing Medical History from Below’, Theory and Society 14 (1985), pp. 175–98. See also Roy Porter, ‘The Patient in England, c.1660–c.1800’, in Andrew Wear (ed.), Medicine in Society (Cambridge: Cambridge University Press, 1992), pp. 91–118. 19. David Armstrong, ‘The Patient’s View’, Social Science and Medicine 18 (1984), pp. 737–44. 20. Nicholas Jewson, ‘The Disappearance of the Sick-Man from Medical Cosmology, 1770– 1870’, Sociology 10 (1976), pp. 225–44. See also Mary Fissell, ‘The Disappearance of the Patient’s Narrative and the Invention of Hospital Medicine’, in Andrew Wear and Roger French (eds), British Medicine in an Age of Reform (London: Routledge, 1991), pp. 92–109. Jewson’s paper was reprinted in the International Journal of Epidemiology 38 (2009), pp. 622–33, together with essays reflecting on its significance for medical sociology and the history of medicine. 21. See Brian Hurwitz and Victoria Bates,‘Narrative, Medicine and the Humanities’, in this volume, pp. 559–76. Angela Woods, ‘The Limits of Narrative: Provocations for Medical Humanities’, Medical Humanities 37 (2011), pp. 73–8; Claire Charlotte McKechnie, ‘Anxieties of Communication: The Limits of Narrative in the Medical Humanities’, Medical Humanities 40 (2014), pp. 119–24. 22. Anne Harrington, The Cure Within: A History of Mind–Body Medicine (New York: Norton, 2008); Moshe Sluhovsky, Believe Not Every Spirit: Possession, Mysticism and Discernment in Early Modern Catholicism (Chicago: Chicago University Press, 2007). On the historically specific nature of the hydraulic model of the emotions, see Barbara H. Rosenwein, ‘Worrying about Emotions in History’, American Historical Review 107 (2002), pp. 821–45. 23. Major works on the early modern patients include: Michael MacDonald, Mystical Bedlam: Madness, Anxiety, and Healing in Seventeenth-Century England (Cambridge: Cambridge University Press, 1981); Ronald Sawyer, ‘Patients, Healers and Disease in the Southeast Midlands, 1597–1634’ (PhD thesis, University of Wisconsin, 1986); Lucinda McCray Beier, Sufferers and Healers: The Experience of Illness in Seventeenth Century England (London: Routledge, 1987); Barbara Duden, The Woman beneath the Skin: A Doctor’s Patients in Eighteenth-Century Germany, trans. Thomas Dunlap (Cambridge, MA: Harvard University Press, 1991 [1987]); Dorothy Porter and Roy Porter, Patient’s Progress: Doctors and Doctoring in Eighteenth-Century England (Oxford: Polity Press, 1989); Mary Fissell, Patients, Power, and the Poor in Eighteenth-Century Bristol (Cambridge: Cambridge University Press, 1991); Brian Nance, The Art of Medical Portraiture; Michael Stolberg, Experiencing Illness and the Sick Body in Early Modern Europe, trans. Leonhard Unglaub and Logan Kennedy (Basingstoke: Palgrave, 2011 [2003]); Lauren Kassell, Medicine and Magic in Elizabethan London: Simon Forman, Astrologer, Alchemist, and Physician (Oxford: Oxford University Press, 2005); Wendy Churchill, Female Patients in Early Modern Britain: Gender, Diagnosis, and Treatment (Farnham: Ashgate, 2012); Olivia Weisser, Ill Conceived: Sickness, Gender, and Belief in Early Modern England (New Haven, CT: Yale University Press, 2015). 24. Duden, The Woman Beneath the Skin, p. 11. Duden makes a particular claim about the exceptional nature of Storch’s writing, p. 69.

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25. MacDonald, Mystical Bedlam, p. xii. 26. Roger Cooter, ‘After Death/After-“Life”: The Social History of Medicine in Post-Modernity’, Social History of Medicine 20 (2007), pp. 441–64 (p. 446). 27. Guenter B. Risse and John Harley Warner, ‘Reconstructing Clinical Activities: Patient Records in Medical History’, Social History of Medicine 5 (1992), pp. 183–205. 28. John Harley Warner, ‘The Uses of Patient Records by Historians – Patterns, Possibilities and Perplexities’, Health and History 1 (1999), pp. 101–11. 29. Sawyer, ‘Patients, Healers and Disease in the Southeast Midlands, 1597–1634’, p. 468 ff. 30. Kassell, Medicine and Magic in Elizabethan London, Ch. 6. 31. Hitchcock, ‘Academic History Writing and its Disconnects’; Hitchcock, ‘Big Data for Dead People’. 32. (accessed 27 July 2015). 33. See for instance, the Newton Project ; The Chymistry of Isaac Newton ; The Newton Project Canada (all accessed 31 May 2015) 34. As Ludmilla Jordanova has noted, ‘Digital culture changes behavior, expectations, patterns of work and mindsets’ (Jordanova, ‘Historical Vision in a Digital Age’, Cultural and Social History 11 (2014), pp. 343–8 (p. 346)). See also Hitchcock, ‘Academic History Writing and its Disconnects’; Adam Kirsch, ‘Technology is Taking Over English Departments: The False Promise of the Digital Humanities’, New Republic, 2 May 2014. 35. Thanks to Mike Hawkins for teaching me this word. 36. See, for instance, the work of State of Play Games: (accessed 31 May 2015). 37. See, for instance, William H. Sherman, Used Books: Marking Readers in Renaissance England (Philadelphia: University of Pennsylvania Press, 2007). 38. N. Katherine Hayles, ‘Print is Flat, Code is Deep: The Importance of Media-Specific Analysis’, Poetics Today 25 (2004), pp. 67–90. 39. See for instance, (accessed 31 May 2015). 40. Andrew Prescott, ‘An Electric Current of the Imagination: What the Digital Humanities Are and What They Might Become’, Journal of Digital Humanities 1 (2012). 41. See, for instance, the Cairo Genizah (accessed 31 May 2015). 42. On early modern time, see, for instance, Edward Muir, Ritual in Early Modern Europe (Cambridge: Cambridge University Press, 1997), Ch. 2. 43. For reflections by the technical director and senior editors on the challenges of the Casebooks Project, see Michael Hawkins, Robert Ralley and John Young, ‘A Medical Panorama: The Casebooks Project’, Book 2.0 4 (2014), pp. 61–9. 44. Sarah Werner, ‘Where Material Book Culture Meets Digital Humanities’, Journal of Digital Humanities 1 (2012); (accessed 27 July 2015). 45. (accessed 27 July 2015). 46. Thanks to John Young for coining this term. On myths of total knowledge, see (accessed 27 July 2015). 47. Johanna Drucker, ‘Humanities Approaches to Graphical Display’, Digital Humanities Quarterly 5 (2011). See also Trevor Owens, ‘Defining Data for Humanists’, Journal of Digital Humanities 1 (2011).

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48. For the use of semantic analysis within the histories of science and medicine, see, for instance, Irma Taavitsainen and Päivi Pahta (eds), Medical Writing in Early Modern England (Cambridge: Cambridge University Press, 2010); Irma Taavitsainen and Päivi Pahta (eds), Early Modern English Medical Texts: Corpus Description and Studies (Amsterdam: John Benjamins Publishing, 2010); Stephen Pumfrey, Paul Rayson and John Mariani, ‘Experiments in Seventeenth Century English: Manual Versus Automatic Conceptual History’, Literary and Linguistic Computing 27 (2012), pp. 395–408; (accessed 27 July 2015). 49. Daniel Rosenberg, ‘Data before the Fact’, in Lisa Gitelman (ed.), ‘Raw Data’ is an Oxymoron (Cambridge, MA: MIT Press, 2013), pp. 15–40, quotation p. 36.

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7 HOW ARE/OUR WORK: ‘WHAT, IF ANYTHING, IS THE USE OF ANY OF THIS?’ Jill Magi, Nev Jones and Timothy Kelly

If there is an ethics of reading and writing Read broken walls red silent text an ethics we certainly see in Husserl’s commitment to the dissemination of descriptions and observations that contradict the ‘dream’ of phenomenological plenitude, fullness, completion Mental Status Exam: it is an ethics that demands an unwillingness to fix the essence of experience, however innocent, slight, or radically progressive such fixings might seem. * of book binding, sewing, cut and paste, mixed and matched often with margins askew Maybe what I want to say is: it is high time and past time to stop retreading old tracks not the case that the work has all been done unless we ask ourselves, within and at the origins of psychopathology, and above all, within and at the origins of phenomenology, not that the writer has arrived at the single story or meaning of the material –

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the ‘hard questions’ between the grooves. * I have been walking through the trails near my house these past few days. The paper I will present today takes up the question of the role of the first person in phenomenology. And one researcher said something like, ‘that’s exactly the sort of road we shouldn’t be going down.’ This paper will perform – * The juxtaposition of nature and artefacts: a landscape littered with old tyres and rusty bikes, or perhaps an old highway, a surface worn by truck tyres, but also cracked and riveted by freezing rain, weeds inserting themselves here and there. Lizards and ants, dust, dead carrion on the side. Dear Reader, The manuscript wants to be a road, but across the pages nature erupts, interrupts, disrupts. * Exercise: What is the shape of the argument you want to make? Is it a Venn diagram, a rhizome, a Rothko painting – fields of colour – or is it a façade with many windows, doors? The page will look like – * noise and norm feign and share solid and fragile cover and peril expose and defend * A demand: a serious reconsideration of the ongoing scholarly colonisation of mad discourse Gait and station normal. Speech, normal rate, fluent, spontaneous. Neatly groomed, cooperative. of the deep questioning rather than the acceptance of myriad privileged terms of psychiatry, notably including voices and delusions Broad, appropriate. Suicidal ideation, none voiced. and acknowledgement of the primary, though certainly not exclusive, role and right of the mad as theorists and thinkers.

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jill magi, nev jones and timothy kelly Alert, oriented X 3. Eye contact, wnl.1 Thought content, without evidence of delusion. *

We must trust our readers – Let the essay perform. Give them footholds. Bring them into familiarity and strangeness. This is sound sense. * Clean shoes and shirt. A smile dissembles. A custom is pretend. I imagine a blank centre, a scaffold on each side. Now the centre is filled and the outsides are blank. Now it fills inward, outward. It reforms. Containment and flow. I expect misrecognition. I wear comfortable clothes, but something to convey an edge. The shape, a space formed by resemblances, nearly mirrored, a space between that holds doubt and purpose. Here I am invisible. Illegible. All the best are scars. A centre, negative space, continually reformed through a confusion of inside and outside. I render as your fiction. But to see me is to see as me. * 1. Certain modalities, experiences, versions or variants of ‘symptoms’ are regularly privileged or fetishised – and those who control these terms and constructs and their academic lives, are rarely if ever themselves mad. 2. Concentration exceptionally difficult, and yet the energy doesn’t dissipate, burn off. A hydraulic sense. 3. Directions on how to read are found in how to write: Take all paragraphs as cells of meaning. Print out. Cut up. Put in envelope. Grab three and piece together. Cleave to method. Cresting on a lyrical wave of uncertain sense, surely. * If we are to write from the twenty-first century, acknowledging the monumental scholarship of historically subjugated informants including women, minorities, Jews, and citizens of the so-called developing world

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As you know, you are dealing with incredibly heavy content in this piece Our vigilance regarding disclosure closure must also extend to political, cultural, and institutional dimensions of experience and discourse Presence over the sign: * hospital fallen and sunk asylum asunder asylum decayed red bricks rest crumbling The whole project of representing the sonic profile of psychosis introduces some interesting difficulties for the critic rows prison squares fallen from utopian blueprint folds soil rubble and red The idea of a standard of accuracy that is inaccessible to your listener brick grit crushed electric bulb remains once noisy buzzing lights then sound Namely there is a representational goal that is entirely subjective the wall spread void strikes me as very interesting, and makes me wonder how much of my own commentary regarding this project relies upon a set of inherited stereotypes around madness. poured into cracks * An individual who hears another’s expression of pain or anger perceives the fact that the one who is speaking is externalising certain psychic lived-experiences, and to that extent he also perceives these lived experiences. He does not, however, live them himself; he has no ‘internal’ perception of them, only an ‘external’ perception. * Reason keeps the grounds. Alert, oriented X 3. The ward goes to filth. Neatly groomed, appears rested and relaxed.

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Now putting green, slice or drive against calculated winds. Broad, reactive, congruent. Carves out space, constructs interiors for more efficient results. * The written word – A mother also in the ‘seriously mentally disabled’ box. Growing up poor. The written word as a physical presence, a picture – ‘Each page is both picture and nonsense soliloquy replete with transgressive nudges.’ Who is and is not doing the speaking? Then I went through the system myself. People read me as having a typical middleclass experience. Feels like being an alien in a costume. What institutional sites legitimise their speech? * I do not fully understand my authorship. I usually never think about voice. Is this fluxing authorial subjectivity a poetics in itself? Does my non-schizo scholar identity allow me to entertain this flux more readily? I don’t know but I’ll share it with you. * Should pain become performance, I’m like the distance runner, vigilant to the nuance between exhaustion and injury. I have both. I am both. How to perform release of the maintenance of reason: I’d like to show the work of it. * The big risk that jumps out at me is the risk of Romanticism If we survey the field of phenomenological psychopathology As you mention, ‘the other of “reason” is personified in the mad’ we arguably encounter a startling number of scholars and clinicians who claim and so we as listeners that are fascinated with madness in this abstract way, want nothing more than to transcend the painful and unknowable that is presented in this piece by making madness into something general and symbolic

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to have figured it out having interviewed and observed ‘schizophrenic’ or ‘psychotic’ patients to romanticise madness. * ‘I was actually looking through the glass on a doorway, and I saw her do this.’ ‘Did you have the impression that the abuse was widespread in the hospital?’ ‘Oh absolutely. In fact I witnessed a nurse, uh, stomp on an elderly woman’s foot.’ * Presenting a disconnect between scholarly work and more personal ethical questions and concerns and commitments distance between certain material realities (poverty, pain) and their academic, aesthetic and clinical representations absence of raw feelings, doubts, uncertainties * Sentence attempt 1: This essay presents reader and writer, insider and outsider, with a matrix of knowing madness, its representations via language, inviting combinations unplanned for, unforeseen: a blueprint for future practices theoretical, lived, and therapeutic. Sentence attempt 2: This essay ‘performs’ the disruption of a more conventional academic narrative, juxtaposing uncertainty, ambivalence and fear with/between recognised/recognisable theory, argument, textual ‘logic’. * That’s a little further down the road, that’s just past the golf course. And there’s a pretty good wooden sign up. I think it’s, um, if I remember correctly, it’s just past where, there was a radio, uh, radio controlled airfield, or used to be and I think it’s just past that – we’ve got coyotes here, fox.

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We have about thirty turkeys on the property. This is the wastewater treatment plant. * When I said that, given the profound complexities and inarticulability of psychosis, it might be one place where lived experience can lead to unparalleled insight, everyone looked at me and one researcher said something ‘that’s exactly the sort of road we shouldn’t be going down.’ * This is the (garbled) This is where the treated wastewater goes out into the river. There’s two outlets here. We treat on average about sixty million gallons a day and if there’s a rain event (garbled) – * This is the shape of her wheelchair, complicating the zone. I stitched it onto a blue substrate to signal speaking. Without this writing, I would not have come upon her shape and colour. Her body includes the mechanism ignored. I remember the book I wrote that began with ‘my love is her body in pain.’ My mother my stutter my pixilated view. Her wheelchair folded up in the trunk. * I think there is real danger in theorising psychosis as something ineffable or only available to be understood on its own terms, by its own subjects. So there is truth in what they say. If ever having been to a psychiatrist or therapist even once qualifies one as a ‘user/ survivor’, our enduring psychosis would mean nothing. Someone has to be explicit on this point, and it looks like it’s going to be us. The trouble is, I don’t think it’s a defensible position. I think it leads to irresolvable contradictions, so common in philosophy. * Not using philosophy to theorise madness but madness to engage philosophy. *

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We are continually updating, people have no idea the technology (garbled) so from our perspective (garbled) from nineteen sixty-two to nineteen seventy-two that’s all that was there (garbled) treating the dissolved and we get a thing called chlorination (garbled) and that’s when we started (garbled) and now in 2008 we treat (garbled) from 1958 to today (garbled) biological. The state and federal EPA2. So yeah, from our perspective, yeah, it’s a lot better (garbled) I think awareness has come up. * Closeness: the distance is the space between interest and concern. One doesn’t just observe, one feels with and towards. One feels as. What is care. What is the should of critique. Close is being near within a shared space. Warming hands together around a fire. On the field rather than in the stands. * This was the early days of Clinton welfare ‘reform’, so my previous students – women on AFDC3 – were no longer allowed to come to adult literacy classes; they had to go get ‘jobs’ which usually meant picking up trash in parks or roadsides. MICA4 students were the only ones who could take classes because, I presumed, they weren’t supposed to be out in public, ‘working’. (The fear in public policies.) We wrote, made our own books, read our books out loud, and wrote letters to each other. The care of poetry: moving a pencil across paper, the quiet in the room. Students always arrived early. Our class met in the Mott Haven branch of the public library. Mott Haven, South Bronx: the poorest congressional district in the nation at the time. I was the ‘except’ in ‘We are all men of colour.’ * And then they left me in there so long that I was completely berserk, and um, couldn’t even control anything.

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I was totally, they made me much sicker in other words. And they kept shooting me up with thorazine, and still didn’t let me out. Just a nightmare. Did they also abuse you physically? No. The only thing was I got molested. I guess you could call it molestation. Sexually molested. Hmm-m. And my memory of it is, that they told me that they had sent him to work in the laundry, to get him away from the patients I guess. * Haunts: These often arrive with neither intention to show nor intention to withhold. Remainders. I am uncertain towards its scaffold – * We are painfully aware of the urgency of addressing quite basic needs and social injustices related to mental health – access to medical care, protections against discrimination, well-established interventions such as supported employment and access to unconditional independent housing. The research that most directly informs state and national policy decisions, as well as clinical practice guidelines and insurance reimbursement protocol, is almost always relatively straightforward empirical and quantitative scholarship. As a consequence, our original title for this chapter was ‘What, if anything, is the use of any of this?’ reflecting, in part, our dis-ease with rarified theoretically driven work in spite of being intellectually drawn to it. * You have enduring concerns about representation and situated knowledge claims. You may indeed know something from living with psychosis. You have concerns about the risk of essentialism implicit in these sorts of knowledge claims.

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Your experimental or theoretical pursuits may be more a reflection of your particular proclivities and less an affect of your status as psychotic subjects. Are you being asked to speak ‘for’ psychotics in this volume? You cannot. You cannot. * I consider myself an activist scholar with a deep interest in critical investigations of the complex phenomenology of psychotic experiences and an equally deep commitment to the empowerment and affirmation of service users and survivors as theorists and thinkers, not merely informants. * And you described it as the nightmare of your life. Mmm-huh. That’s torture. That’s supposed to be the worst thing you can do as a punishment to people, is put them in isolation (garbled). And I know, it was these windows right here that I could see out of, uh, I could see Lookout Mountain but I couldn’t see the forest. It was a high window (garbled). Oh I was very aware of the interstate. It would have been brand new at the time. It was beautiful. It had everything. Moccasin Bend was beautiful? * The patient is there to provide narrative and observational data-points Not ‘this essay says’ but ‘this essay works’ – the clinician or scholar to ‘grasp the distinctive form of coherence of [another person’s] consciousness’ language does not stand for something, but does something: the results of which are ultimately disseminated through academic articles, edited volumes and clinical textbooks. creates something brand new. How are/our work. the typo takes hold, making problematic ‘the work’ as finished, stable entity and the slip of ‘are’ into ‘our’, indicating a shared, generative problem of being/language. *

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ancestral bone foundation in the mortar pristine correction, bulldozed omission – * Schizophrenia is a chronic condition that shows episodic improvement and worsening. The condition does not generally interfere with basic activities of daily living. Symptoms include ‘Well you must not really be crazy or you wouldn’t be so “high-functioning”.’ distressing voices, paranoia and perceptual changes. To organise thoughts, concentrate on tasks and communicate effectively in the presence of others. Both understanding others’ communication and communication back to others. They can range from mild/ ‘What, if any, privileged knowledge is “lived experience” after all?’ moderate to severe. * It is possible to go forward, writing, without calling it ‘progress’. Steadfast faith in language, the need to conceal, the need to reveal, to articulate, the need to complicate. The words get worked. * The research that most directly informs state and national policy decisions, as well as clinical practice guidelines and insurance reimbursement protocol, What is the kind of reading we want readers to experience? is almost always relatively straightforward empirical and quantitative scholarship. Not to be tricky, not to deflect, but to create a pattern of action, As a consequence, our original title for this chapter was ‘What, if anything, is the use of any of this?’

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a text that enacts the theory at the kernel of this essay, reflected, in part, our dis-ease with rarified theoretically driven work finding a new path, equipping readers with new tools, in spite of being intellectually drawn to it. getting out of old ruts. * How does one introduce oneself? I retreated to my room. What position does one speak from? I retreated to my room. All the identity management. Also, there is the fixity of any one account, certainly including an artistic one. I retreated to my room. What’s to prevent someone from simply employing the same methods? I retreated to my room this afternoon. * Page, room. Field of inquiry house. Paragraph grid. Weaver’s grid versus the agitation of fibres to make felt: fulling. Page fulled or— This is my voice undomesticated. Nomad felt versus transcribed. The tape presses. Margins align. Also press. Grid this difficulty, felt this possible: both. If multiple not romantic, is. Vectoring. Choice to turn off choice. Sort the loom. Abandon looming. * To recap more simply and move (now) forward,

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what I’m saying is roughly as follows: if, motivated by a desire to recuperate a certain originary phenomenological exigency, we read Husserl’s texts as both tenaciously committed to closure and self-aware of the (deeply phenomenological) impossibility of this closure (and impossibility at the heart of intentionality), we are left with the question of how, if we are nevertheless not to ‘reduce the abyss that can in fact separate retention [or perception or “raw” madness] from representation’, to negotiate it. how to negotiate it To read well and write well – * how not to reduce the abyss * A text funnelled toward one point and I was unhappy making paragraph-by-paragraph arguments. I wanted it all. Not to be tracked, but to trace and erase at will, to imprint my body-self responding, living – and not to prove. Result: massive mobilisation of language, marks, page use. * poured into cracks – the wall, I spread void *

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The first person in its radical inaccessibility and difference is fundamental; rent from the philosophical scene only at the highest cost. On the other hand, the conclusion also cannot be that ‘anything goes’ in the sense of ‘any’ first-person account would constitute rigorous, careful theory. * Maybe there’s an important set of tensions in this? The textuality of the language. It matters less with songs if people ‘get it’ or not. * Reply. I’m feeling Reply. Trying to rest, take care of Reply. I don’t have access to the Bennett article Reply. I’m actually pretty worried. I think you’re in a lot of danger and so * 19 July 2013 To whom it may concern: This letter is to provide additional documentations on the condition of * To live in three places: denial, exhaustion and madness. Denial is the down time, the between time. Madness gives over to the psychosis. And then the exhausted space – the essay describes – like now. Tiresome to maintain, despairing, clear, electric. * not just madness (You can hold these states lightly.) but a myriad of other commitments talents a preoccupation with nuance and reflexivity (You can hold our places lightly.) *

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It occurred to me that, though I felt defensive at her language, there was a lot we agree on: we need better services, we should emphasise prevention, to say nothing of her reflexively acknowledging that the distance between her ‘lived experience’ and her daughter’s was sufficient that a claim to be a ‘peer’ to someone with such experiences would be problematic. * ‘A line of a poem is an action or the sense of a circumstance of some unknown individual, experienced as if sensation or memory of one’s own action. There seem to be peoples, a nation. These actions are as if being (in) folding reality of history, rather than a synopsis of it that falsifies it.’ This is Leslie Scalapino on Myung Mi Kim. * ‘But the time to add Moccasin Bend to the park system is now. From the early Native Americans to Hernando de Soto on his way to the Mississippi from the Cherokees beginning the Trail of Tears to the brave soldiers of the Civil War the history of “The Bend” calls us to action now. We must do both – preserve significant sights like Moccasin Bend and deal with the backlog of maintenance needs at our national treasures.’ that falsifies it * The potentially apophatic role of the mad theorist: not telling us what mad is, but rather emphasising what it isn’t. * as I speak and others speak, flow displaces the static or fixable image; the figure of commerce, rather than discrete subjects or objects, is centred – as I speak and others speak, visual examples of fetishisation and othering would have been useful for the PowerPoint – as I speak and others speak, there is no solution that I can see that doesn’t depend on everyone just having integrity and not colonising others’ experiences – that falsifies it and tremors the present

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Afterword: An Archeology, A Poetics At an early stage of development of this piece, Elizabeth Povinelli’s masterful (2011) essay, The Will to be Otherwise/The Effort of Endurance, circulated among us, leaving its trace and inviting one possible reading of our chapter.5 Drawing from Foucault, Povinelli describes her essay as ‘reflections on self-formation in the shadow of subjugated knowledge’. She asks how peculiar forms of subjectivity maintain themselves under conditions of exhaustion – willing towards truth-speaking and arising from alternative social projects. She further asks, ‘what political and theoretical weight will be given to the exhausting conditions of this space?’ Resonating with this sense of exhaustion, our hope for this piece has been to show something like Povinelli’s ‘will to be otherwise’: that is, a commitment to supporting forms of life at the margins, and the realisation of spaces scarcely realised and which remain largely potentialities. We ask, how might we all – our colleagues who we greatly admire and whose work appears in this volume, and our readers – not only produce work, but also do work that, as Povinelli puts it, ‘capacitates modes of life currently around us but without an explicit force among us?’ We believed that a way of writing could tip our ambivalence into ‘explicit force’. Jill’s experimental writing exercises and interventions and hybrid-form commentary provide the scaffolding, alongside a caring critical distance crucial to the realisation of this project. But this is not a poetics of violence. Here, to cut up and refashion is a poetics of care; it was no longer possible to keep on addressing imagined readers with the same language sequences, spacing, syntax, thesis and conclusion structure that had often trapped us. This is a poetics of space and potential. The burden is not with us to show or prove and fill the space with paragraph after paragraph. Rather, we hope this form is an invitation for the reader to share the act of answering the question, ‘what does this mean?’ And so, in conversation with the theme of evidence and experiment, our chapter is in some sense both. The first-person experience of psychosis most often appears in scholarly work as ‘evidence’ for an often dispassionate other to interpret. Rigorous work on the phenomenology of psychosis has been carried out almost exclusively by those without claim to the first-person lived experience. We are deeply indebted to the work of those like R. D. Laing and Louis Sass, in whose writing we find recognition, but which has also been invaluable in our reclamative fashioning of something positive in the often painful experience of madness. Nevertheless, we ask, might phenomenology, as articulated in Edmund Husserl as a disciplined engagement with first-person experience, provide closer access to psychosis, ‘originarily’? We remain unsure what, if anything, we have achieved. But this chapter has been a ‘trying things out’, as Povinelli says: Acknowledging the limits of what a kind of thinking can account for opens our thought to something broader than accounting. It breaks the clerical hold of thought and refashions it as an experiment on the self in the world. It sees thought as an experiment in and against power, a method of trying things out as a manner of capacitating threshholds.6

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We still wonder: what about texts that do not ‘work’ – or work only by virtue of major foreclosures? What if this is just such a text? And if it is ‘just such a text’, what do we do about that? Hence, the strange grammar of our title that began as a typo – the ‘how’ of the way something works is vital, as is the ‘how’, not ‘what’, of who we are.

Sources Nev Jones, ‘Back to the Future: Rethinking the “First Person” in Phenomenological Psychopathologies’, presented at International Network for Philosophical Psychiatry Symposium, ‘The Future of Phenomenology’, 20 July 2013 (accessed 31 May 2015). ‘Moccasin Bend’: a place-based autoethnography of psychosis and ongoing multimedia project; excerpts from poetry, a chapbook, song lyrics, transcriptions of field recording and interview by Timothy Kelly (visit the exhibit: (accessed 31 May 2015)). Testimony regarding the Moccasin Bend Tract from United States Congress House Committee on Resources. Subcommittee on National Parks and Public Lands. (2002). HR 271, HR 980, and HR 1668: Legislative Hearing before the Subcommittee on National Parks, Recreation, and Public Lands of the Committee on Resources, US House of Representatives, One Hundred Seventh Congress, First Session, June 12, 2001 (vol. 4). Available at (accessed 31 May 2015). Meta-commentary on ‘Moccasin Bend’ from Jill Magi and Otto Muller. Correspondence between the authors regarding this paper, including responses to writing experiments developed by Jill Magi.

Notes 1. 2. 3. 4. 5.

Medical shorthand for ‘within normal limits’. The EPA is the US Environmental Protection Agency. AFDC stands for ‘Aid to Families with Dependent Children’, a US public aid programme. MICA stands for ‘medically ill chemically addicted’. Elizabeth Povinelli, ‘The Will to Be Otherwise/The Effort of Endurance’, South Atlantic Quarterly, 111.3 (2012), pp. 453–75. 6. Povinelli, ‘The Will to Be Otherwise’, p. 472.

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8 AFTERWORD: EVIDENCE AND EXPERIMENT Patricia Waugh

n styles that range from the performatively paratactic and experimental, to scholarly sobriety and sharp sociocultural critique, these chapters engage issues concerning the contemporary uses and forms of experiment and the building and distribution of kinds of evidence in relation to new concepts and practices of experimentation within the contemporary biomedical sciences. They explore some less obvious ways in which knowledges and practices forged in this new ‘megaphone’ science resonate far beyond conventional spaces of research and are deeply and reciprocally entangled with the embodied self-fashioning of individual selves and group identities.1 Everywhere, not only in postmodern theory or art, as Ian Hacking has reminded us, people are made up: but they are fashioned through highly reflexive and recursive knowledge-making practices deeply intertwined with and distributed across multiple agencies and cultural domains.2 In this response, I will consider key themes explored in these chapters by bringing to bear on the discussion some earlier conceptualisations of experiment and evidence that still powerfully shape our cultural assumptions and I will consider briefly whether some further reflection on experimentalism in the arts may also usefully bear on key interdisciplinary questions for a future critical medical humanities. Major shifts in the concepts, working practices and organisation of the biomedical sciences have prompted new ethnomethodological and conceptual work on experimental systems.3 From Quine’s concept of ‘webs of belief’ in which all knowledge systems are entangled, Hacking’s reflections on representation and intervention, and the revival of interest in Ludwik Fleck’s early work on scientific ‘thought communities’, meta-reflection on experiment in science has moved away from abstract post-positivist discussions of proof, to interest in the material-discursive organisation of knowledge systems.4 How do experimental systems generate and consolidate what comes to be regarded as ‘evidence’? Who are the agents and players, and what are the processes and instruments involved, their relations and their beneficiaries? No longer imagined as narrowly controlled, experiment in biomedicine now appears exploratory and open, involving an array of instruments, models, data, media, procedures, tacit practices and recursive moves that collapse distinctions between theory and practice, inside and outside, instrument and experimental subject, researcher and researched. Its new epistemic objects seem ill fitted to inherited epistemological categories. This new biosociality

I

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opens up a plethora of critical challenges to the medical humanities, as well as unprecedented opportunities to negotiate new and exciting interdisciplinary entanglements. Like the new natureculture of the post-genomic, epigenetic, the Anthropocene, neurobiological plasticity, distributed cognition and the digital humanities – key cultural and scientific contexts shaping contemporary medical practices – these chapters reflexively highlight their own artefactual nature and conceptual entanglement with the objects of their exploration in a way that pre-empts and guards against premature closure. Biomedical science itself, of course, is constantly under the biocapitalist pressure of closure encapsulated in the idea of translational research. So a critical medical humanities has an investment in the open that is positionally more difficult to achieve in the biomedical contexts it analyses. Metaphors and concepts of complexity, the network, recursivity, emergence, assemblage and reflexive embodiment central to systems biology – the fastest-growing area of the new genomic and postgenomic sciences – are now providing explanations and organising devices across many varied domains of contemporary culture.5 But an important task for the medical humanities is to look at the many and different ways in which these concepts are assembled and put to practical uses. Just as informational concepts around life as a ‘script’ empowered the early development of molecular biology and genetics, in the new genomic biologies, the network, as a complex process of entanglement, is the organising trope slowly making redundant the concept of the gene as an entity.6 How might the medical humanities find appropriate, open and dynamic interdisciplinary models and procedures with which to begin to get a firmer – more detailed and nuanced – handle on these concepts, motifs and models of biosocial complexity that are now distributed through increasing numbers of knowledge systems? The biomedical sciences are being transformed by the post-genomic understanding of cellular processes and epigenetics that have required abandonment of classic unidirectional models of genetic determination that rested on a realist construction of causality and a reductionist understanding of method. How far do these new complexity discourses in the life and environmental sciences, which have challenged epistemologies and the understanding of experimental and evidentiary processes, require a reappraisal on the part of the humanities about its own assumptions concerning experiment and knowledge? Several chapters note the need to find ways to overcome the tedious legacies of former realism versus anti-realism disputes that, culminating in the Science Wars of the 1990s, also deterred early medical humanities work from proper engagement with cultural and critical theory. But things have moved on. The concept of artefactual realism explored in relation to the new systems sciences is ceasing to be dismissed as an oxymoron or a weaselly metaphor, but is now engaged through a variety of cognate arguments from Barad’s ‘agential’ realism, Harding and Longino’s ‘standpoint’ realism, Dupré, Hacking and Cartwright’s ‘promiscuous’ realism, to the various post‘critical realisms’.7 All are seeking ways to overcome a situation where, if the sciences continue to refuse to relinquish the mystique of positivism, and the humanities refuse to continue to view science as a threat to empathy and human flourishing, the deep assumptions of ‘two cultures’ antagonisms will continue to sabotage or make difficult

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any genuinely new interdisciplinary frameworks and enterprises. It is time to break out of models of respectful integration, as well as those of subaltern mimicry, but with a critical awareness of the difficulties and challenges involved. For at the heart of the disciplinary distribution of facts and values that Bruno Latour has called the ‘modern settlement’ is an assumption, primarily the legacy of positivism, of the non-epistemic status of the humanities in relation to science that legitimates and requires what Fitzgerald and Callard here refer to as the ‘helpmeet’ model of the medical humanities. I would go even further and suggest that the fetishisation of integration, albeit unintentionally, may ultimately serve to strengthen disciplinary foundationalisms that underpin assumptions of ‘ownership’ of particular domains of knowledge and practice; the desideratum of integration may insidiously preserve the knowledge hierarchies of the positivist legacy. The chapters gathered here, casuistically, theoretically, performatively, challenge models of integration, mimesis, generalisability and assumptions that true knowledge is simply reflective or correspondent. Refusing but recognising the lingering presence of disciplinary fact/value dualisms that position the humanities outside the fully epistemological, they also suggest that future challenges to the positivist legacy must extend beyond the favourite topoi of the medical humanities, such as the clinical encounter, that lend themselves to phenomenological analysis, the affective, the dialogic and the narrative. In preserving stereotypes of the appropriate strengths of the humanities, this narrowing of its appropriate domains and methodologies allows the perception of science as sole guarantor of properly evidenced knowledge to persist. A critical humanities that disrupts the processes that encourage such perceptions is not a new postmodernism in sheep’s clothing; in no way are the expertise, efficacy and validity of science devalued. But exploration of the artefactual, of the role of technologies, processes of dissemination, instruments, in the assembling of biomedical knowledge reveals how there is no area that is not entangled with processes of observation and measurement. Exposure to alternative agencies, users, perspectives can produce not only different but equally valid kinds of knowledges, but also radically new epistemic objects. All seven of these chapters therefore call for a level playing field where knowledge is shared, assembled, distributed and entangled, but with different inflections that produce new epistemic objects, across the arts and the sciences. What is challenged is the model of interdisciplinarity that envisages pre-packaged individual disciplines retaining and contributing their particular strengths in constrained and appropriate spaces and simply reframing epistemic objects already securely positioned in other specific disciplines. What is called for instead is recognition of the necessary vagueness and fuzziness of the epistemic object as it is displaced from disciplinary ownership to enter a place of experimental exploration that may bring forth something new and radically different. Like high-energy physicists assembling the myriad differential traces left as various sensitive instruments move over the invisible surfaces of entities only observable through the effects of the instruments, new epistemic objects may also emerge whose identities are entirely a product of the experimental process. In this model of experiment and knowledge-making, the ‘modern settlement’ is completely unsettled.

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But positivist assumptions die hard. For what is etymologically and, one might argue, ideologically at their core, is the concept of positum – to lay out – as if data collection and its processing through formal testing and rules of reasoning constitute the only method that can deliver proper and ‘truthful’ evidence of the world’s structures and forms. In rigid or unreflective modes of positivism, the necessarily insufficient determination of any theory by data, or the existence of tacit assumptions that still underpin even the most rigorously ‘purified’ theory construction, or the entanglement with artefactual processes, are seen to have minimal bearing on what emerges as ‘knowledge’ of the world. Medicine’s continuing adherence to this model is reflected in the modes of defence of Evidence-Based Medicine of the 1990s.8 Though tempered with the humanistic and Hippocratic in clinical practice, disease is still regarded as an entity that is available for knowledge through a structured hierarchy of inquiry that runs from the gold standard of the randomised controlled clinical trial (RCT) all the way down to patient narratives and testimonies. So methodological scepticism is regarded as the appropriate epistemological stance for the researcher or clinician; a more radical scepticism that insists on the indeterminism of knowledge is ruled out of court as denying the possibility of accurate and stable evidence. The first experimental textbook, written by Claude Bernard in 1865, established the idea of controlled observation and testing through the use of manipulated models that might stand as proxies for natural objects and organisms outside the experimental system.9 The nineteenth-century literary portrayal of the Promethean scientist – from Mary Shelley’s Frankenstein to H. G. Wells’s Dr Moreau – builds on the recognition of how the model confers on the scientist God-like powers to legislate for, manipulate and alter nature. But such assumptions underpin too E. O. Wilson’s arguments for a ‘consilience’ between the sciences and the arts and humanities.10 Like earlier arguments of the logical positivist unity of science movement of the 1930s, Wilson’s version of integration – consilience – is built on the assumption of a mutual acceptance by the humanities and the sciences of a hierarchy of knowledge whose foundation lies in the fundamental building blocks of ‘life’, whose discovery is the work of science. His pronouncement that ‘the genes have culture on a leash’ is shorthand for an entire onto-epistemology.11 But the operative concept holding all of this together, from early microbiology on, is the belief in the unity of life that legitimates the model’s authority as proxy and source of generalisable evidence. Though the era of Big Data has seemed to privilege the statistical analysis of trends and correlations despite the fallibility of statistical frequencies, the idea of the experiment comes with a weight of positivist baggage trailing in its wake: the belief that it carries the most secure evidence, the explanation of the causal mechanisms of disease. Positivism chooses to overlook the fact that theories never compare directly with models and that models never compare directly with empirical reality, for each is mutually entangled in the generation of the other and dependent on the nature of the experimental set-up.12 Thomas Kuhn was the first philosopher of science to analyse the function of the model as the basic representative unit in science and to recognise its manipulation as an artefactual process producing a simulacrum entangled with and

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in the world and therefore changing and having effects on it, rather than constituting the world’s accurate and comprehensive representation of it.13 This is true whether the model is regarded as a synecdoche representing a cut from nature or an analogue of its underlying processes. But as Carusi’s chapter explores, contemporary systems biology makes unavoidable the way that the experimental space and the epistemic objects that emerge from it are specifically entangled, distributed, fragile, unstable and unpredictable. One might suggest, indeed, that the processes and objects described seem to have more in common with those of the experimental arts than those of positivist models in science. An interesting challenge for the new critical medical humanities might be to begin to find more ways to explore entanglements and overlappings of different models of experimental space across the sciences and humanities as part of a process of challenging the widespread assumption that only the resolutely scientific space is the producer of hard ‘evidence’. Already the work on experimental practices examined above is exposing flaws in conventional views of scientific experiment, such as the dependence of the concept of the model as proxy on unwarranted beliefs in the unity and structural stability of living processes. From this perspective, from the molecular to the molar, all living nature, at every level of scale, would need to begin and remain essentially carved at the joints. Few would accept this assertion in bald terms and yet it underpins the classic idea of the scientific experiment that is still a powerful cultural imaginary; we need more interdisciplinary experiments with and on other kinds of experiments to expose the limitations, blindnesses and particularities of different experimental systems. In the divvying up of the domains of art, science and morality that is the focus of Kant’s three great Critiques, the function of the model that is a work of art is conceded to be important in allowing humans to bridge the gap between the phenomenal and the noumenal, bringing into existence, through the created imaginary world, the means to glimpse what might exist beyond the limits of the epistemologically known and which has, as yet, no determinable conceptual existence.14 In this view, however, although art might imagine possibility, only science can offer probabilities close to truths concerning nature’s actual processes. But this is a view of the separation of art and science now fundamentally challenged in the examination of the knowledgemaking procedures of the new biosciences undertaken in these chapters. Models themselves now challenge what we agree is ‘biologically real’. Models are no longer exclusively the specially bred denizens of the wetlab (such as mice, rats, macaques, E. coli and the tobacco mosaic virus); they are also mathematical, statistical and computational assemblages involving multiple symbol systems and media, and requiring new visual display technologies and systems that can more readily suggest the threedimensional interconnectedness of complex systems than the conventional written scientific report or graphic tables and charts. The more distributed and complex processes of the modern laboratory – that might now involve numerous sites, thousands of scientists and multiple kinds of equipment, modelling and display – make it almost impossible to ignore the artefactual in the assembling of what is regarded as evidence, just as it becomes impossible to lay out a precise relation between the symbolic

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import of the model and the set of conditions for which the model purports to stand or to bring into existence. In art, experiment has always been conceived in this way as exploratory, unpredictable, emergent and world-directed rather than mimetic.15 Art is mostly defended as an expression of the singularity of individuals’ experiences and history; only science deals in the universal and the directly generalisable. John Cage describes as experimental in music that which is indeterminate in outcome, for it includes and anticipates the listener as a co-participant in creating an emergent and therefore unpredictable meaning.16 For the aesthetic theorist, Theodor Adorno, the motivation for experiment is provided ‘when impulse can no longer find pre-established security in forms or content’.17 Experimental art sets out to defamiliarise the world and lay bare its artefactual processes, but the new experimental processes in the contemporary biosciences also break up outmoded concepts that obscure rather than illuminate the world as they reify assumptions about nature as given, rather than recognising its artefactuality through multiple systems of experimental knowing. Experiment in the new biomedical sciences, like those of high-energy physics, also now acknowledges the final indeterminism of objects, their dynamic, recursive and decentred complexity and entanglement with their experimental systems. If one task for the critical medical humanities is to make more transparent those artefactual processes elided in order to render ‘evidence’ incontrovertible, and to explore its human effects, another is to find ways to share in and contribute its own multi-disciplinary experimental systems knowledge in the multi-modal and multi-media shaping of new intra-disciplinary epistemic objects. This might include too thinking in new ways about historical experimentation, as in Scheid’s fascinating chapter on the entanglement of a variety of historical webs of belief, from holism and traditional medicine to dialectical materialism, in the fashioning of biomedical systems science in contemporary China.18 Literary texts also provide rich sources for rethinking the production of knowledge. George Eliot’s famous image of the pier-glass (in her most scientifically engaged novel, Middlemarch, of 1874), whose rays illuminate a pattern of scratches on a surface of polished steel, has been read as a moral parable about egotistical blindness.19 It might now be interpreted as a reflection on modelling and complexity and the artefactual building of knowledge. That her partner was G. H. Lewes, who was the first to describe, in 1874, the year of the novel’s publication, emergence as the key mechanism of complex systems that seem to resist positivist reductionism, makes this interpretation even more plausible.20 There is a great deal of hype and hope around the post-genomic, though it is undeniable that the molar clinical gaze is now thoroughly entangled with the molecular; we think of ourselves increasingly as complex and intertwined. But a critical medical humanities also has work to do in exploring irresponsible and dangerous over-extrapolations of these new concepts of complexity and entanglement, and their embedding in specific contexts of biosociality. The kinds of analysis offered in the chapters by Viney and Rehmann-Sutter and Mahr suggest how the flattened agential hierarchies in theories of assemblage such as Actor Network Theory, for example, might usefully be reframed critically through historical work on earlier moments when hype

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around new epistemological systems in biology licensed the objectification of people by other people as ‘things’, experimental models or data sources, with horrendous consequences.21 Any metaphor or analogy that enables new ways of knowing inevitably obscures others and may indeed build unwarranted ontological assumptions on the back of its epistemological embeddings. Post-genomic techniques in systems biology were enabled by concepts and metaphors from cybernetics and then developed further with the appearance of the World Wide Web. But complexity and entanglement can become catch-all terms that rewrite the world in their own image, just as the central dogma of Crick and Watson turned the genome into a script-writing service for life. The new concepts of complexity and entanglement are everywhere and no more so than at the heart of the creation of a new risk culture with its centralised mechanisms for controlling risk and enhancing security. Complexity is a double-edged tool allowing systems biologies to escape charges of reductionism whilst enabling an extension of their reach, legitimised as ‘science’, to ever more domains of the lifeworld. In being critical, the medical humanities will need to be dynamic, experimental and riskier than this; in being entangled, it will need to be watchfully entangled. It will need to be one step ahead, even of this latest game in town.22

Notes 1. ‘Megaphone science’ is the term used in Hilary Rose and Stephen Rose, Genes, Cells and Brains: Bioscience’s Promethean Promise (London: Verso, 2012). 2. Ian Hacking, ‘Making Up People’, in Thomas C. Heller (ed.), Reconstructing Individualism (Stanford: Stanford University Press, 1986), pp. 222–36. 3. See, in particular, Karen Barad, Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning (Durham, NC, and London: Duke University Press, 2007); Peter Gallison and Bruce Hevly, Big Science: The Growth of Large-Scale Research (Stanford: Stanford University Press, 1992); Sandra Harding, Whose Science? Whose Knowledge? (Ithaca, NY: Cornell University Press, 1991); Karen Knorr-Ketina, Epistemic Cultures: How the Sciences Make Knowledge (Cambridge, MA, and London: Harvard University Press, 1999); Helen Longino, The Fate of Knowledge (Princeton: Princeton University Press, 2001); Joseph Rouse, How Scientific Practices Matter: Reclaiming Philosophical Naturalism (Chicago and London: Chicago University Press, 2002); Hans-Jörg Rheinberger, An Epistemology of the Concrete: Twentieth-Century Histories of Life (Durham, NC, and London: Duke University Press, 2010). 4. W. V. O. Quine, ‘Two Dogmas of Empiricism’, Philosophical Review 60 (1959), pp. 20–43; Ian Hacking, Representing and Intervening: Topics in the Philosophy of Natural Science (Cambridge: Cambridge University Press, 1983); Ludwik Fleck, The Genesis and Development of a Scientific Fact, ed. T. J. Trenn and R. K. Merton (Chicago: University of Chicago Press, 1979 [1935]). 5. See Hallam Stevens, ‘Networks: Representations and Tools in Postgenomics’, in Sarah S. Richardson and Hallam Stevens (eds), Postgenomics: Perspectives on Biology after the Genome (Durham, NC, and London: Duke University Press, 2015). 6. See John Dupré, Processes of Life: Essays in the Philosophy of Biology (Oxford: Oxford University Press, 2012).

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7. See Dupré, Processes of Life; Ian Hacking, The Social Construction of What? (Cambridge, MA, and London: Harvard University Press, 1999); Nancy Cartwright, How the Laws of Physics Lie (Oxford: Oxford University Press, 1983). 8. See John Armstrong Muir Gray, Evidence-based Health Care and Public Health (Edinburgh: Churchill Livingstone, 2009). 9. Claude Bernard, Introduction to Experimental Medicine (London: Dover, 2003 [1865]). 10. E. O. Wilson, Consilience: The Unity of Knowledge (New York and London: Little, Brown, 1998). 11. E. O. Wilson, On Human Nature (Cambridge, MA, and London: Harvard University Press, 1978), p. 167. 12. See Knorr-Ketina, Epistemic Cultures, for a discussion of experimental differences between physics and biological sciences. 13. Thomas Kuhn, The Structure of Scientific Revolutions (Chicago: Chicago University Press, 1962). 14. Immanuel Kant, Critique of Judgement, trans. James Creed Meredith (Oxford: Oxford University Press, 2007). 15. The major exception to this is Zola’s justification of the experimental novel as extending the research methods of naturalist science in his The Experimental Novel and Other Essays, trans. Belle M. Sheraton (New York: Cassell, 1893). 16. John Cage, Silence: Lectures and Writings (Middletown: Wesleyan University Press, 1961). 17. Theodor W. Adorno, Aesthetic Theory (London: Bloomsbury, 2013), p. 23. 18. See also Britta Timm Knudsen and Lisa Blackman, ‘Researching Affect and Embodied Hauntologies: Exploring an Analytics of Experimentation’, in Carsten Stage (ed.), Affective Methodologies (London: Palgrave–Macmillan, 2015). 19. George Eliot, Middlemarch (London: Penguin Classics, 2012). 20. G. H. Lewes, Problems of Life and Mind: First Series, 2 (London: Trübner, 1875). 21. See Bruno Latour, Reassembling the Social: An Introduction to Actor Network Theory (Oxford: Oxford University Press, 2007). 22. The research underpinning this essay was funded by a Leverhulme award F/DO128?BF.

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Part II The Body and The Senses

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9 PICTURING PAIN Suzannah Biernoff

Capturing Pain What does pain look like? Charles Darwin’s The Expression of the Emotions in Man and Animals (1872; Figure 9.1) includes a well-known list of the visible and physiological signs of pain. Published a year after The Descent of Man, it sets out to show that the human face is the product not of divine fashioning, but of descent with modification.1 Joy, melancholy, fear, disgust, contempt, anguish: for Darwin, the bodily

Figure 9.1 ‘Horror and Agony, copied from a photograph by Dr Duchenne’, from Charles Darwin’s The Expression of the Emotions in Man and Animals Figure 21. Source: .

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language of human emotion – and pain – provides compelling evidence for evolution, and his account of pain appropriately begins in the animal kingdom: When animals suffer from an agony of pain, they generally writhe about with frightful contortions; and those which habitually use their voices utter piercing cries or groans. Almost every muscle of the body is brought into strong action. With man the mouth may be closely compressed, or more commonly the lips are retracted, with the teeth clenched or ground together. There is said to be ‘gnashing of teeth’ in hell; and I have plainly heard the grinding of the molar teeth of a cow which was suffering acutely from inflammation of the bowels. . . . With man the eyes stare wildly as in horrified astonishment, or the brows are heavily contracted. Perspiration bathes the body, and drops trickle down the face. The circulation and respiration are much affected. Hence the nostrils are generally dilated and often quiver; or the breath may be held until the blood stagnates in the purple face.2 There are some major obstacles to the study of emotional expression, however. The facial movements involved, notes Darwin, are often ‘extremely slight, and of a fleeting nature’. We perceive subtle differences in expression from moment to moment, yet cannot say with any certainty what has changed.3 This difficulty is compounded by the fact that our own emotions are apt to cloud our judgement and memory: when we witness ‘deep emotion’ in others, he ventures, ‘our sympathy is so strongly excited, that close observation is forgotten or rendered almost impossible.’4 In order to capture such mercurial and transient phenomena as feelings, Darwin turned to the relatively new medium of photography, using a selection of images from a series published a decade earlier by the French neurologist, Guillaume-BenjaminAmand Duchenne. In the original prints, Duchenne’s experimental apparatus is visible; he used electrical probes to identify the muscles responsible for specific facial expressions. When he was preparing the illustrations for his own book, Darwin instructed the engraver to omit the electrodes and hands of the operator visible in the original print. This has the effect of making the subject’s expression look more natural, but it also evades the question of whether the experiment itself was painful. As Darwin remarks, this particular man, a shoemaker by trade, had impaired sensation in his face. Because of his insensitivity to pain, Duchenne had been able, in his own words, to ‘stimulate his individual muscles with as much precision and accuracy as if I were working with a still irritable cadaver’.5 What we see here is not pain, in other words, but its artful simulation (Duchenne refers to his method as ‘art’, and quotes Buffon’s description of the human face as a ‘living picture where the emotions are registered with much delicacy and energy’).6 To complicate things further, when Darwin showed the photograph to his colleagues and family friends, ten out of twenty-three people identified the expression not as pain, horror or agony, but as extreme fright (three), anger (six) or doubt (one).7 Researchers at the University of Cambridge recreated Darwin’s parlour experiment online and summarised the responses of 18,000 participants in pie charts.8 The results for our photograph are extremely varied, ranging from ‘angry’ (the most common response)

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to ‘shocked’ (the second largest group), ‘surprise and horror’, ‘fearful’, ‘outraged’, ‘disgust’, ‘aghast’ and ‘confused’. Only about 7% of respondents associated the expression with pain. There are a number of plausible explanations for this marked lack of agreement: a changing historical repertoire of emotions (the authors of the Cambridge experiment note that the top response to Darwin’s image of ‘deep grief’ was ‘bored’); the enduring problem of categorising feeling, both physical and emotional; and the difficulty of identifying emotions – especially complex ones – from static images. Duchenne’s photographs and Darwin’s engravings do not provide us with any of the contextual clues we normally use to gauge how others are feeling. Voice, movement, narrative and social context: all of these are absent. Pain, of course, is not usually thought of as an emotion (which may also explain why the participants in the online ‘Emotion Experiment’ did not see pain). Nor is it generally included in the universality hypothesis of facial expressions, which focuses on the six basic emotional states of happiness, surprise, fear, disgust, anger and sadness. In what follows, I take it as given that the expression of pain is not universal. There are reasons to doubt that any emotional expressions are universal, but the arguments in this debate are beyond the scope of this chapter.9 What I am concerned with here is how we ‘picture’ pain collectively – or more correctly (for there is no generic ‘we’), how ideas and images of pain shift and change in relation to social and political contexts, as well as medical practices and priorities. There has been some excellent work, in recent years, on the social and cultural history of pain, including Lucy Bending’s The Representation of Bodily Pain in Late Nineteenth-Century English Culture (2000); Esther Cohen’s The Modulated Scream (2010), on pain in late medieval Europe; Javier Moscoso’s Pain: A Cultural History; and Joanna Bourke’s The Story of Pain: From Prayer to Painkillers (2014), which traces the idea, practice and treatment of pain in the English-speaking world since the eighteenth century. All of these studies – and several others I will refer to in this chapter – contradict Elaine Scarry’s seminal account of pain as something that destroys language, erodes the bonds of sociality, and ultimately ‘unmakes’ the world of the person in pain.10 Bourke opens her book with the question ‘What is pain?’ One answer, offered by the Victorian physician Dr Peter Mere Latham, is that pain is simply ‘what is spoken about as “Pain” ’.11 Someone who says they are in pain ‘is in pain’. Most scholars within the humanities – and many clinicians – would accept Latham’s definition. It foregrounds the perspective of the sufferer and allows for the discursive nature of pain. There is a problem, though: Latham assumed, not unreasonably, that pain was something: something spoken about, something suffered. This tendency to think of pain as a thing or an ‘it’ – independent of the sufferer and the observer – is misleading (Bourke goes so far as to call this common assumption an ontological fallacy).12 In Scarry’s book, The Body in Pain (1985), for example, it is pain that has agency, not the person who suffers pain. According to the literary theorist Geoffrey Galt Harpham, Scarry: treats as . . . a baseline of reality, what is in fact a combination of sensations, dispositions, cultural circumstances, and explanations, a phenomenon involving body,

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mind, and culture. [Scarry] has, in other words, misconceived the character of pain precisely by giving it a character, by treating it as a fact – a brute fact, the first and final fact – rather than as an interpretation.13 Rather than taking pain as a ‘brute fact’, Bourke suggests, we would do better to think of it as an event. The questions then become rather different: ‘how have people done pain and what ideological work do acts of being-in-pain seek to achieve?’14 One very common way to ‘do’ pain is to objectify it using metaphor, to imagine pain as a thumping hammer, a knife, a red-hot poker, a crushing vice, an electric shock, a ligature, an army of ants, a gnawing beast or a host of demons, as in a nineteenth-century advertisement for Wolcott’s Instant Pain Annihilator (Figure 9.2). Neuroscience ‘does’ pain very differently, by looking for ‘pain signatures’ in brain scans in the hope that it will one day be possible to ‘objectively quantify a patient’s pain’.15 Social, literary and iconographic histories of pain, however, have shown that pain is as much a cultural phenomenon as a physiological one. To reiterate Harpham’s criticism of Scarry, pain is not a brute fact but an interpretation: a compound of body, mind and culture. The implications of this for clinical science and medical humanities are profound. As well as asking about the severity of a patient’s pain or its precise character (in order to make a diagnosis or offer appropriate pain relief), one would want to know how an individual’s pain was negotiated socially (in hospital, at home or in the workplace) and what their pain meant to them. Jonathan Cole and Shaun Gallagher make a similar argument, in this volume, about the value of a phenomenological approach to pain and disability, especially in cases of chronic illness or long-term impairment. One patient they discuss, a man with spinal cord injury, explains that when he is feeling angry his constant pain gets him down, but at other times it is a comfort – ‘almost my friend’ – because it puts him in touch with his paralysed body.16 The pictorial, verbal and gestural languages that people use to communicate pain are, for the most part, conventional (although there is also room for improvisation and resistance, as Cole and Gallagher’s chapter reveals). There are ‘cultural scripts’ for being in pain, and sticking to the script means that you are more ‘likely to generate a desirable response in terms of medication, care and compassion’.17 Studying the visual cultures of the past gives us access to some of the most enduring cultural scripts in human history. These scripts (ways of behaving and feeling) are context-specific, of course, but they also vary according to gender, class and age: children and adults are expected to ‘do’ pain differently, as are men and women. The pain-scripts we will focus on here have specific histories, but their influence can still be detected in attitudes towards illness and suffering. They are: beauty and ugliness as symptoms of moral value (or its deficit); the Christian iconography of sacrifice; and the masculine ideal of stoicism. None of the images in this chapter is straightforwardly a picture ‘of’ pain, but they can all be seen as ways of performing or ‘doing’ pain. Because I will be focusing on visual sources, questions of aesthetics (specifically to do with beauty, ugliness and visual pleasure) emerge that have tended to be overlooked in the scientific and historical literature on pain. This is important because aesthetic judgements are not confined to discourses on art; they have very real social, political and economic causes – and effects.

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Figure 9.2 Wolcott’s Instant Pain Annihilator, c. 1863. Source: Library of Congress, Washington DC. No known restrictions on publication. .

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Ugliness, in other words, is not just an aesthetic category: it is a social one. ‘Abominations of the body’ is the first of Erving Goffman’s three categories of social stigma (the other two are blemishes of character, and the tribal stigma of race, nation and religion). ‘By definition,’ he writes, ‘we believe the person with a stigma is not quite human. On this assumption we exercise varieties of discrimination, through which we effectively, if often unthinkingly, reduce his life chances.’18 Our bodies are visibly and aesthetically marked by class, ethnicity, sexuality, ability and disability, but they are also marked by illness, injury and ageing. These markers matter in clinical medicine and public health just as much as they matter in visual culture. Ugly suffering can provoke anger or guilt (in this sense, ugliness has positive value in anti-war art). Beautiful suffering, however, is more commonly used to elicit compassion or pity – and charitable donations. These affinities between physical appearance and emotional response warrant closer attention. Critical medical humanities has the potential to elucidate the ways in which images (both scientific and artistic) exceed simplistic notions of illustration, documentation and expression, and become embodied. Darwin and Duchenne happily acknowledge that science can be artful in its methods, but Darwin was less convinced of the illustrative value of fine art to scientific inquiry. In the introduction to The Expression of Emotions, he admits having hoped to ‘derive much aid from the great masters in painting and sculpture’, but says that his search proved fruitless. ‘The reason is’, he speculates, ‘that in works of art, beauty is the chief object; and strongly contracted facial muscles destroy beauty.’19 Pain and anguish are disfiguring, and art is concerned with the expression of beauty. This passing comment bears closer scrutiny, not least of all because in the art-historical canon of Darwin’s day – which encompassed the Classical tradition and the Christian iconography of suffering – there seems to be no shortage of pain in art. In order to understand the problem of picturing pain – its unexpected elusiveness where one most expects to find it – I have risked ranging more widely than is usual in academic art history. My point of departure is familiar enough: the famous Laocoon now on display in the Vatican Museum (Figure 9.3). Some of the subsequent detours (through eighteenth-century social caricature, twentieth-century medical portraiture and abject art) are, however, less well trodden. My aim is not to provide a chronological survey of images of pain – which would need a book – but to raise questions about pain and representation that are relevant to medical humanities and clinical science.

Beautiful Pain, Ugly Pain Found at the baths of Titus in Rome in 1506, the Greek sculpture known as the Laocoon Group influenced the course of both Renaissance art and eighteenth-century Classicism, and occupied some of the greatest German intellectuals of the eighteenth and nineteenth centuries (Herder, Moritz, Schiller, Goethe, Hegel, Schopenhauer and Schlegel all wrote about it).20 In his book Laocoon’s Body and the Aesthetics of Pain (1992), Simon Richter argues that Classical aesthetics is fundamentally concerned with

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Figure 9.3 Richard Dalton, Laocoon and his Sons, Attacked by Sea Snakes. Etching, 1746. Source: Wellcome Library, London.

the body in pain because it is through pain that beauty is demonstrated. ‘Pain reveals,’ he argues. It is ‘the origin of beauty’.21 The Laocoon is also significant, Nigel Spivey points out, because it is one of the earliest naturalistic depictions of human emotion we have (the date is still a matter of debate, but it was made by three Greek sculptors before 70 ce, when Pliny the Elder recorded it in his Natural History).22 The sculpture shows the Trojan priest and his sons succumbing to the great sea serpents that the Goddess Athena has sent to destroy them during the siege of Troy. Art history students usually encounter the group via the commentaries of two eighteenth-century scholars: Johann Winckelmann (1717–68), regarded as the father of German Classicism; and his antagonist, the philosopher Gotthold Lessing (1729–81). For Winckelmann, writing in the 1750s, the central figure exemplifies the ‘noble simplicity and quiet grandeur’ of Classical Greek sculpture.23 Laocoon’s struggle is dignified and ennobling, Winckelmann argues: ‘Just as the depths of the sea always remain calm however much the surface may rage, so does the expression of the figures reveal a great and composed soul even in the midst of passion.’24 This is beautiful pain – silent pain – the embodiment of Stoic philosophy. Lessing saw the sculpture very differently, as an object lesson in the superiority of poetry over painting and sculpture.25 Words do not have to resemble what they signify

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in order to be understood, he reasons, but painting and sculpture are constrained by the necessity of resemblance (he is, of course, writing about figurative art; modernism turns this formula on its head). To convey horror, an artist must show us horror. And for Lessing, like Darwin, the graphic depiction of pain or suffering was invariably ‘disfiguring’ (he also describes it as ‘belittling’ – verkleinernd).26 Comparing the sculpture to Virgil’s telling of the story in the Aeneid, Lessing insisted on the difference between seeing pain (in visual art) and hearing it voiced (in a poem). The ugly (das Hässliche) and the disgusting (das Ekelhafte) occupy three full chapters of Lessing’s essay on the Laocoon.27 Here he makes a distinction not only between painting and poetry, but also between painting as ‘an imitative skill’ and painting as ‘a fine art’ (a distinction that would have been obvious to both Darwin and Duchenne). Anything – so long as it is visible – can be imitated, but art ‘restricts itself only to those visible objects which awaken our pleasure’.28 The separation of art from craft or skill, and also from science, resulted in new hierarchies of representation in the eighteenth century. If beauty and taste were the principal concerns of art, eighteenth-century medicine, as Martin Kemp observes, privileged images that bore ‘the mark of truth’ over those that idealised the human body or treated it allegorically.29 It should be clear by now that beauty and visual pleasure are slippery concepts. Aristotle had famously argued in De Poetica that even unpleasant objects and emotions become pleasing in imitation. Lessing countered that ugliness was an exception. When fear, terror, melancholy or compassion is depicted in a painting, for example, we do not confuse the representation – an expression of melancholy, for example – with our own sadness. Ugliness and disgust, though, are ‘always real and never imitations’.30 The sight of a disgusting object – Lessing later gives the examples of a harelip, a mole on the face, ‘a flat nose with prominent nostrils’ and a complete lack of eyebrows – has no equivalent in poetry, in which meaning is revealed gradually, rather than in an instant.31 In the visual arts, he elaborates, ‘ugliness exerts all its force at one time and hence has an effect almost as strong as in nature itself.’32 In short, ugliness ‘offends our eyes, contradicts the taste we have for order and harmony, and awakens aversion irrespective of the actual existence of the object in which we perceive it’.33 In his own compendium on ugliness, Umberto Eco observes that the response to beauty is often (or ideally) one of ‘disinterested appreciation’, whereas ugliness provokes ‘a reaction of disgust, if not violent repulsion, horror, or fear’.34 As the following terms from Eco’s book attest, the emotional and visceral response to ugliness carries with it a moral judgement. To be ugly is to be: repellent, horrible, horrendous, disgusting, disagreeable, grotesque, abominable, repulsive, odious, indecent, foul, dirty, obscene, repugnant, frightening, abject, monstrous, horrid, horrifying, unpleasant, terrible, terrifying, frightful, nightmarish, revolting, sickening, foetid, fearsome, ignoble, ungainly, displeasing, tiresome, offensive, deformed and disfigured.35 Ugliness is not just beauty’s other. It is, wrote Karl Rosenkranz in his 1853 treatise on the aesthetics of ugliness, the ‘hell of beauty’.36 Laocoon’s creators had a dilemma:

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obey the rule of beauty or represent the disfiguring effects of pain. Lessing sets out the problem: The demands of beauty could not be reconciled with the pain in all its disfiguring violence, so it had to be reduced. The scream had to be softened to a sigh, not because screaming betrays an ignoble soul, but because it distorts the features in a disgusting manner. Simply imagine Laocoon’s mouth forced wide open, and then judge! Imagine him screaming, and then look! From a form which inspired pity . . . it has now become an ugly, repulsive figure from which we gladly turn away. For the sight of pain provokes distress; however, the distress should be transformed, through beauty, into the tender feeling of pity.37 The focal point of this passage is the gaping cavity of Laocoon’s mouth. It testifies to the inescapable muteness of visual art (Virgil’s hero ‘lifts high his hideous cries to heaven, just like the bellows of a wounded bull’) and also to all that the Classical body disavows: the body’s materiality, its unpredictable passions and dark, uncharted depths. Lessing’s reaction is interesting for another reason, though: it makes pity reliant on beauty – not absolute beauty, perhaps, but the ameliorating effects of beauty. Does ugliness preclude compassion? A meaningful answer would need to contextualise both ‘ugliness’ and ‘compassion’ historically – something that is beyond the possibilities of this chapter – but there is evidence from different historical periods to suggest that compassion, pity, sympathy (and empathy, a more recent addition to the vocabulary of humanitarian feeling) are thoroughly entangled with aesthetic concerns.38 Joanna Bourke quotes from an article published in 1896 in the London Hospital Gazette. The author is a second-year medical student at the London Hospital, which served the immigrant population and working poor in the area of East London around Aldgate. The scene is a surgical-dressing room, with ‘Jews, Turks, and Heretics mingl[ing] together in one seething mass of injured and diseased humanity’.39 A ‘child of Israel’ in a far corner of the room provokes a ‘feeling akin to loathing’ (this patient – an ‘uncanny object’ – is not even accorded the status of a sentient being). Elsewhere in the treatment room, ‘a puny, wizened, shrivelled up little fellow of doubtful nationality’ protests when an orderly approaches him with gauze to dress his wound. Groaning and rocking ‘to and fro on the couch’, he says he cannot ‘bear it’ then ‘slink[s] away amid the smiles of the stalwart Britons standing around’. The intern, known to us only as E. M. P., finds relief in the ‘pleasanter sight’ of two ‘fair haired little English boys . . . wearily, but patiently waiting their turn’. The stoicism and physique of a ‘fine British working man’ (‘well developed – what a chest’) are also noted approvingly. Asked by the surgeon if he is ready – scalpel in hand – the workman ‘cheerily’ replies, ‘All right, sir’ and, firmly holding the back of a chair, draws a ‘deep breath’ and is ‘silent – motionless – till all is over’. E. M. P’s attitude towards his immigrant patients was not unusual. ‘Indeed,’ notes Bourke, ‘it took until the 1980s for the routine underestimation of the sufferings of certain groups of people to be deemed scandalous.’40 Witnessing another’s pain or ‘deep emotion’ does not necessarily or automatically excite sympathy, as Darwin

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assumed. E. M. P’s denial of his patients’ humanity – his visceral disgust in the face of their suffering – is indicative of the presence of stigma. In contrast, his white, workingclass patients perform the cultural scripts expected of them; their stoicism is no doubt deeply ingrained, but it is also instrumental in eliciting care. Erving Goffman described stigma as one of the ‘primal scenes of sociology’, an experience likely to be uncomfortable for both parties.41 The vignette in the London Hospital Gazette could serve, just as well, as a primal scene of critical medical humanities, illuminating the performative nature of suffering as well as the contingency of feeling.

Imitatio Christi The vocabulary of suffering and stoicism discussed so far has its roots in Classical philosophy and aesthetics, but Christian theology has an equally long-standing investment in pain.42 In The Modulated Scream: Pain in Late Medieval Culture, Esther Cohen emphasises the positive significance of pain in the European Middle Ages. ‘Suffering was not to be dismissed, vanquished, or transcended: suffering was to be felt with an ever-deepening intensity.’43 The possible reasons for this are various and include the frequency of famine, war and plague, and a reorientation of religious practice around emotive and bodily experience beginning in the eleventh century and culminating in the Baroque. Focusing on the period between the thirteenth and fifteenth centuries, Cohen argues that pain was productive: ‘it was used – by inquisitors (who used it to elicit confession); by physicians (who used their patients’ descriptions of pain as the basis of diagnosis); by the devout (whose sufferings brought them closer to Christ).’44 Beginning in the thirteenth century, visual experience played an increasingly important role in both public religious life and private devotion.45 Dramatic re-enactments of Biblical stories; the exhibition of relics and other sacred objects; the elevation of the host within the mass; the production of devotional images: all of these developments point to a new ‘need to see’.46 If the unrepresentability of God had previously been taken as proof of his divinity, the daily possibility of seeing the Virgin and Child, participating in a Passion play, or beholding the suffering of Christ came to ‘fulfil the postulate that reality attains to full existence and is proven only in visibility’.47 In the account of her sixteen ‘showings’ or revelations (completed in around 1393), the anchoress Julian of Norwich mentions that she prayed for ‘a bodily sight’ of Christ’s Passion, ‘in which I might have more knowledge of the Saviour’s bodily pains’.48 Julian’s ‘compassion’ is not to be confused with modern humanitarianism, which seeks to alleviate the suffering of others: to end pain.49 Her desire to be identified with Christ in his suffering, death and resurrection has its Biblical precedent in the words of the Apostle Paul: ‘I have been crucified with Christ; it is no longer I who live, but Christ lives in me . . . .’50 Paul, however, speaks of an interior transformation. Julian’s imitatio Christi involved a bodily mnemonic: the transcription of Christ’s every pain on to her own flesh. Julian’s text is a virtuoso performance of pain, yet the ‘expression’ of pain (as Darwin understood it) is absent from medieval art.

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Faces, in the art of the Middle Ages, could signify virtue or vice, but the emotions or ‘passions’ were located in the body, not the face. Indeed, it was the absence of a theory of physiognomy that allowed for such a rich tradition of the grotesque in medieval culture.51 The energetic (and at times gleefully obscene) face-pulling and contortionism that go on in the margins of medieval manuscripts are nothing to do with the language of emotion. The grotesque faces of demons and the grimaces of the damned register evil or sin, not feeling. Christ’s beauty and serenity would have been read as an index of his divine nature, not a barometer of his physical or emotional torment. In Christian art of the Renaissance, the face remains a site of transcendence. Even when the bodies of saints and martyrs are dismembered, pierced with arrows or twisted in agony, their serene faces (read: their souls) look beyond the earthly realm, beyond pain, beyond death, to eternity (Figure 9.4). The face of the crucified Christ is allowed to register suffering (it is theologically necessary that he is seen to die a real death). But Christ’s face must still be beautiful, and the exceptions to this rule (look at Holbein’s cadaverous entombed Christ in the Kunstmuseum, Basle) are truly shocking. In Illness as Metaphor (1978), Susan Sontag speculated on the lasting impact of Christian portrayals of suffering on modern attitudes towards illness and disease. ‘Our very notion of the person, of dignity, depends on the separation of the face from body,’ she writes, ‘on the possibility that the face may be exempt, or exempt itself, from what

Figure 9.4 Martyrdom of Saint Sebastian. Oil painting. Source: Wellcome Images.

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is happening to the body.’52 When the face is disfigured by pain, injury or disease, its ability to ‘perform’ endurance, patience or serenity is compromised. This might help to explain why some illnesses – and certain kinds of injury – are more easily romanticised, and some more stigmatised, than others. ‘What a truly luminous sight it is to see a young girl or a young man on their deathbed, victims of consumption,’ Rosenkranz exclaims in his treatise on ugliness; and conversely, how ‘nauseating’ the eruptions and deformities that accompany tertiary syphilis.53 Lessing, too, uses examples of facial disfigurement to illustrate his theory that ugliness – even in a painting or a sculpture – provokes disgust. If there is beauty in suffering, it seems it is selectively bestowed. I came across Henry Peach Robinson’s Fading Away (1858; Figure 9.5) when I was comparing Victorian images of tuberculosis (still, in 1858, called consumption) and syphilis: both common, and incurable, nineteenth-century diseases. The tragic but lovely subject of Robinson’s composition is certainly luminous; she is not so much fading away as becoming lighter. Her slight figure seems composed of an ethereal substance altogether different from that of her three companions. An older and a younger woman, presumably mother and sister, are absorbed in their silent bedside vigil. The man looking out of the window with his back to us is harder to place – is he the girl’s father or suitor? – but it is easy to guess the poetic significance of the setting sun that draws his gaze. Less obvious to the casual observer is the fact that this intimate domestic scene has been produced from five separate negatives. Fading Away is what

Figure 9.5 Henry Peach Robinson, Fading Away, 1858. Albumen silver print from glass negatives. Source: .

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was known at the time as a combination photograph. It is also completely staged: the young woman is a model, and her companions have been dressed and arranged by the photographer. The fictitious nature of Fading Away was not a problem for nineteenth-century viewers. Robinson wanted his work to be seen as art, not as documentary photography, so he made the image look like a painting and exhibited it with lines from Percy Shelley’s poem Queen Mab (‘Must then that peerless form . . . As breathing marble, perish!’). What bothered critics was a nagging doubt about the tastefulness of Robinson’s subject matter. The Photographic Journal’s reviewer declared, ‘Fading Away is a subject I do not like, and I wonder Mr. Robinson should have allowed his fancy to fix on it; it is a picture no one could hang up in a room, and revert to with pleasure.’54 To represent illness, or to picture pain, is to become entangled in questions of beauty, pleasure and taste.

Treating Pain With one exception (the advertisement for Wolcott’s Instant Pain Annihilator), the images discussed so far have been variations on the theme of beautiful or ennobling suffering. Historians of medicine, however, will be quick to point out that there are plenty of pictures – often made for commercial or pedagogical purposes – that illustrate the alleviation of pain. An easy way to see a representative sample is to type ‘pain’ into the Wellcome Images search tool.55 What is perhaps surprising is that the portrayal of medical treatment in these popular prints and in advertisements so often occurs within, or borrows from, the tradition of caricature, in which ugliness and illness are metaphors for moral decay and social disorder (Figure 9.6). So we have: images of headache; toothache; gout and dental extraction; indigestion; the first use of ether as an anaesthetic in 1846; hypochondria, illustrated in Punch with the caption: ‘I’ve got such a pain in my heart doctor – just here.’ ‘But your heart isn’t there!’ ‘Ah! Then that’s what’s the matter – it’s moved!’56 and advertisements for pain relief. In all these cases, pain is something to be treated, whether pharmacologically, surgically or (in the case of gout) by cutting down on brandy, stout and steak and kidney pies. In the case of the sick poor, social reform was part of the cure, ‘sickness’ being understood as a collective malady as much as an individual one. Lucy Bending has shown that Christianity and medicine offered two ‘dominant, though conflicting’ paradigms for understanding pain throughout most of the 1800s.57 By the close of the century however, developments in medical science, especially physiology, had begun to dislodge the idea that pain was necessary and instrumental (as either a form of punishment or a means of atonement). Advances in pharmacology and clinical medicine play a part in this story too: casting doubt on the ‘naturalness’ and

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Figure 9.6 Three miserable men suffering from gout, toothache and influenza sitting around a table. Coloured lithograph from the series Tregears Flights of Humour, no. 36. Source: Wellcome Library, London.

inevitability of pain by approaching it as a bodily phenomenon that could be treated either surgically or chemically.58 The process of secularisation that Bending describes was disrupted, however, by the resurgence, during the Great War, of an unmistakably Christian ideology of suffering. It is also complicated by the persistence of stoicism as a masculine ideal. The wounded were expected to exhibit fortitude, to make light of their pain and, at the end, to die quietly (Figure 9.7).59 ‘I’ve got a motto,’ went the words to a popular music-hall song: ‘always merry and bright!’60 We think of injury and convalescence as passive states – to be a patient is ‘to receive medical treatment’ – but what comes across in the letters, diaries and memoirs of the war-wounded is the performative effort involved. Indeed, pain is conspicuous by its absence in the sources I have been looking at for a book on the aesthetics of disfigurement, which takes as its starting point Henry Tonks’s intimate drawings of facial casualties, made in 1916 and 1917 (Figure 9.8).61 Although partly about the representation of facial injury – in portraits, press photographs and medical records – one of the aims of this project has been to explain the unrepresentability of certain kinds of injury, and certain kinds of pain, in the public sphere. In Britain, during and after the First World War, facial injury was written about in the press, but almost never shown outside the professional context of clinical medicine. Tonks worked with the plastic surgeon, Harold Gillies; some of the portraits were reproduced

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Figure 9.7 A young soldier lies dying in a woman’s arms on a deserted battlefield. Colour halftone, c. 1915, after Dudley Tennant; 32.7 × 45.3 cm. Published by S. H. & Co. Ltd, London and Manchester. Source: Wellcome Library, London.

Figure 9.8 Portrait of Private Kearsey, by Henry Tonks, 1917. Pastel. © Hunterian Museum at the Royal College of Surgeons.

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in Gillies’s 1920 textbook, Plastic Surgery of the Face, but they were never intended for public consumption. Although images like those in Private Kearsey’s case file record devastating injuries, they are in a profound way not ‘about’ pain. The wartime culture of stoicism and trench humour goes some way towards explaining the absence of pain in Tonks’s portraits, and in the medical photographs of the same patients, but it is not the only factor. There is a sense, in the drawings, of a surgeon’s eye at work – not just because these are drawings of patients before and after surgery, but also because Tonks himself trained as a surgeon before becoming an artist. In his memoirs, he admits to having ‘often wondered . . . what the figure looks like to anyone who has not this knowledge [of anatomy]’.62 He would not have been insensitive to a patient’s physical pain or psychological distress, but it was not his primary concern. The diagrams Tonks produced as a graphic record of Gillies’s operations capture the surgical gaze (and touch) in the most economical form possible. The injury is abstracted from its human context, certainly from any suggestion of pain or suffering. To borrow a phrase from the Royal Academy’s first professor of anatomy, the obstetrician and surgeon William Hunter (1718–83), they possess ‘a kind of necessary Inhumanity’.63 As drawings, they have more in common with tailor’s patterns than portraits, and for Gillies and Tonks their purpose was indeed pedagogical as well as documentary.

The Powers of Horror Tonks’s drawings of facially injured soldiers are seen today as some of the most poignant and honest images to come out of the First World War. At the 1995 Venice Biennale several of the portraits were included in Jean Clair’s themed exhibition, Identity and Otherness: a show that filled the Palazzo Grassi and the Museo Correr in St Mark’s Square with images of ‘the century of atrocities’.64 Henry Tonks’s small studies of facial casualties took their place alongside canonical works by Otto Dix, Max Beckmann and Jacob Epstein, while in the British Pavilion Jake and Dinos Chapman revisited Goya’s Disasters of War. Twenty years on, and almost a hundred years after Tonks made them, the Sidcup portraits have become war art for the twenty-first century. They have an uncanny ability – as good portraits do – to make the absent present and revivify the past, but their legacy is also a product of the 1990s and that decade’s embrace of horror and ugliness as aesthetic and political tools. What Tonks regarded as too disturbing for public consumption is art, now, precisely because of its power to disturb. The final pages of this chapter will consider the re-emergence of pain under the umbrella of abject art and what it means to think about suffering stylistically. In the 1980s and 1990s, the English translation of Julia Kristeva’s Powers of Horror (originally published in French in 1980) became one of the key texts associated with the so-called corporeal turn in the humanities and social sciences: an intellectual trend that drew inspiration from various sources, most notably feminist theory and the writings of Michel Foucault. The renewed theoretical interest in the body was,

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in part, a response to the inexorable postwar expansion of consumer culture with its progressive commodification of almost every facet of everyday life – and every aspect of embodiment. However, by the late 1980s there was a more immediate reason to focus on the body and biopolitics, and that was the AIDS crisis. Writing in 1991 of the pervasive ‘politics of anxiety’ in Britain, the sociologist Bryan Turner observed that ‘for a great variety of reasons . . . the 1990s already have, more in a medical than in a chronological sense, a terminal quality.’65 In avant-garde art of the period, on both sides of the Atlantic, the image of the diseased, fragmented, disfigured or dying body seemed to assume an apocalyptic significance: a tendency that crystallised in the Whitney Museum’s 1993 exhibition, Abject Art: Repulsion and Desire in American Art, and in Norman Rosenthal’s controversial Royal Academy shows, Sensation and Apocalypse, in 1997 and 2000 respectively. The glossary entry for ‘abject art’ on the Tate Collection website provides this definition for visitors: It can be said very simply that the abject consists of those elements, particularly of the body, that transgress and threaten our sense of cleanliness and propriety. Kristeva herself commented ‘refuse and corpses show me what I permanently thrust aside in order to live.’ In practice the abject covers all the bodily functions, or aspects of the body, that are deemed impure or inappropriate for public display or discussion.66 As Nicholas Chare notes in the introduction to his book on the aesthetics of abjection, by the mid-1990s ‘abject’ was a term applied to any art with ‘visceral pretensions’ – and there was a lot of it around.67 In the UK, the transgression of the ‘clean and proper’ body became one of the hallmarks of Charles Saatchi’s collection of young British artists. Chris Ofili (whose own work is in the Saatchi collection) described typical ‘Saatchi art’ as ‘one-off shockers. Something designed to get his attention.’68 If Kristeva was often revered (and sometimes maligned) as the high priestess of abject art, Saatchi was its most prominent financier, as well as a publicity genius. Chare’s book is not cultural history, and it steers clear of the more banal and cynical examples of abject art. Instead, he makes the case for a more nuanced engagement with the concept of abjection itself, as well as its cultural expression. Most people do not read beyond the opening chapters of Powers of Horror, where the passage quoted in the Tate glossary appears. Certainly, few definitions of abjection refer to the later sections on the writer and physician Louis-Ferdinand Céline, whose virulently anti-Semitic pamphlets are the subject of Chare’s first chapter. The point is that the abject, in Céline’s prose-poetry, cannot ‘be said very simply’ (as the glossary entry would have it) to consist of corpses, disease, decay, waste, flesh, filth, viscera, skin and so on. To reduce the abject to a checklist of cultural taboos is to miss the point that, for Kristeva, abjection (like pain) is fundamentally implicated in both subject-formation and the development of language. Through Céline’s writing, Kristeva explores the violent poetics of abjection; its dark ‘musicality’ and rhythm; its style. It is this attention to style, Chare argues, that her critics and followers have overlooked, and it

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is the problem of style – how to show or speak horror – that Chare’s book addresses. These debates may seem distant from the central concerns of medical humanities, but they answer a need – articulated persuasively by Angela Woods – to think about health and illness ‘beyond narrative’.69 If pain is something we do or perform (and not just a brute fact), then how it is performed – and how it is interpreted – are critical. So the singer and composer Diamanda Galás evades the ‘threat of beautification’ by ‘becoming’ rather than ‘describing’ horror. One of Galás’s sources – recited in her performance Defixiones, Will and Testament – is the Jewish poet Paul Celan’s Todesfuge (Fugue of Death). Composed of a ‘language of the lifeless’, to use Primo Levi’s phrase, the poem evokes the Nazi death camps.70 The words leave no room to breathe or reflect. These are poems that are meant to be spoken and heard, sensed rather than narrated or made sense of. ‘Hör dich ein mit dem Mund,’ Celan writes: ‘Listen your way in with your mouth.’ To ‘mouth’ Celan’s poems or to be ‘fucked up’ by Galás’s vocals is to take leave of the symbolic and enter the realm of the semiotic.71 In Revolution in Poetic Language (1974), Kristeva argued that the semiotic dimension of language has its origins in the ‘rhythm, intonation, and echolalias of the mother–child symbiosis’.72 The symbolic aspect comes later, as the child internalises the linguistic structures, such as grammar and syntax, necessary for intelligible speech. The semiotic is always present, though. It is the bodily and affective ‘lining’ of signification, but also the place where meaning collapses. The symbolic ‘clothes’ language, fashions it into a social artefact. Following this train of thought, there is another way to conceptualise the relationship between pain and representation – not in terms of communication and understanding (content, in other words), but in terms of aesthetics and even style. Chare opens his Preface with Scarry’s description of the violent unmaking of the world: To witness the moment when pain causes a reversion to the pre-language of cries and groans is to witness the destruction of language; but conversely, to be present when a person moves up out of that pre-language and projects the facts of sentience into speech is almost to have been permitted to be present at the birth of language itself.73 Like Scarry, he is fascinated by the disintegration of language in extremis, a process of ‘unwording’ that he extends to the visual languages of painting and photography as well as to speech and writing. Thus Francis Bacon’s Study after Velázquez (1953) is described as ‘painting as unwriting’ (p. 49). In the process of returning the body to nerve and flesh, Bacon enacts ‘a journey back towards the psyche’s beginnings, a journey into the night’ (p. 55). Bacon’s painterly facture finds its vocal parallel in the performances of Galás, in which words cease to be the ‘contours for thought’ and become instead something terrible and inhuman and palpable. ‘Eviscerated’ of sense (p. 60), language becomes something that is felt rather than understood. To define such expressions as ‘visual art’ or ‘music’ is to miss their appeal to other senses (notably touch) and their insistent, sometimes overwhelming, materiality. Kristeva’s account of abjection does not map perfectly on to the experience, representation or witnessing of pain. Disgust and a fear of contagion are symptomatic of the abject, the presence of which is also marked by cultural taboos. Both pain and

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abjection, however, are limit experiences: at their most powerful, they threaten a loss of self or consciousness and make us face ‘the limits of the human universe’.74 There is also a parallel between the ontological status of pain, as Joanna Bourke sees it (as an event, not a thing), and Kristeva’s insistence that the abject is not an object. ‘When I am beset by abjection,’ she writes, ‘the twisted braid of affects and thoughts I call by such a name does not have, properly speaking, a definable object.’75 Elsewhere, she calls the abject a ‘composite of judgment and affect, of condemnation and yearning, of signs and drives’.76 Like pain, abjection is something we both experience and ‘do’.

Conclusion Given the peripatetic nature of this essay, it seems appropriate to finish with some reflections rather than any definitive conclusions. The first is that images are cultural and epistemological artefacts. They are different from the lived experience of pain, whether one’s own or another’s. This sounds obvious but is often overlooked. Painting, sculpture, medical illustration and photography never simply represent or record pain or injury (as Darwin thought); they make it meaningful and useful; they prescribe and they normalise, but they also have the potential (as in abject art) to reimagine and resist. In the Laocoon, pain is a proving ground. In Christian images of the saints and the Passion, suffering is both instrumental and exemplary. In pharmaceutical advertising, pain is something that can be relieved if you buy the right product. Portrayals of the piteous poor are lessons in the politics of sympathy, and gout provided satirists with a visual shorthand for hedonistic excess. Representations – however convincing or seemingly unmediated – are not reality. Nevertheless, as Bourke reminds us, the cultural scripts we use for pain play a part in constituting that pain: they influence how it is experienced subjectively, as well as how it is negotiated socially. The anthropologist Michael Kimmel uses the term ‘retrojection’ to describe the process by which cultural forms – images, metaphors, gestures – ‘come to be felt inside the body’.77 So the questions we need to ask about the visual cultures of pain, particularly within the context of critical medical humanities, are not just the obvious ones: How has pain been represented? What does it look like? Such questions invite the kind of art-historical survey I set out, at the start, to produce, but this seems inadequate if the goal is to understand how cultural artefacts, like altarpieces or advertisements, come to be ‘felt inside the body’. How do images work, in specific contexts, as ways of ‘doing’ pain? Simply surveying pictures of pain also fails to address the undemocratic nature of representation: the fact that some pains are represented and others are deemed unrepresentable. A further question we might want to ask is: when is suffering not shown, and why? If pain is absent from the visual culture of modern medicine, for example, what purpose is served by its absence? Finally, images are not just cultural and epistemological artefacts – legible things, the bearers of knowledge and ideology and cultural capital – they are also aesthetic objects. Classical aesthetics dictated that pain, in art, should be ameliorated by beauty. Idealised, pain reveals and instructs; it inspires fellow feeling. Beauty, according to this

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formula, was a prerequisite not only for art, but also for the stirrings of sympathy in the beholder. But if the eighteenth century saw the emergence of ‘spectatorial sympathy’ as a cornerstone of moral philosophy, it was spectatorial pain that preoccupied artists, curators and theorists by the end of the twentieth century.78 ‘You are about to see videos which will make you suffer,’ warned the French performance artist Orlan as her ‘surgery-performance’ (one of nine operations between 1990 and 1993) was broadcast live to audiences around the world.79 In art, pain can be staged, anthropomorphised, faked, inflicted, performed, referred or signified. And pain is never just what is spoken of, but how it is spoken. In its attention to the aesthetics of pain and the poetics of illness, critical medical humanities has the potential to go beyond the limits of narrative.

Further Reading Lucy Bending, The Representation of Bodily Pain in Late Nineteenth-Century English Culture (Oxford: Clarendon Press, 2000). Joanna Bourke, The Story of Pain From Prayer to Painkillers (Oxford: Oxford University Press, 2014). Esther Cohen, The Modulated Scream: Pain in Late Medieval Culture (Chicago: University of Chicago Press, 2010). Peter Fifield, ‘The Body, Pain and Violence’, in David Hillman and Ulrike Maude (eds), The Cambridge Companion to the Body in Literature (Cambridge: Cambridge University Press, 2015). Robert Mills, Suspended Animation: Pain, Pleasure and Punishment in Medieval Culture (London: Reaktion, 2005). Javier Moscoso, Pain: A Cultural History (Basingstoke: Palgrave Macmillan, 2012). Deborah Padfield, Perceptions of Pain (Stockport: Dewi Lewis Publishing, 2003). Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (Oxford: Oxford University Press, 1985). Susan Sontag, Regarding the Pain of Others (New York: Picador, 2003).

Notes 1. Charles R. Darwin, The Expression of the Emotions in Man and Animals (London: John Murray, 1872). 2. Ibid., pp. 69–70. 3. Ibid., pp. 17–18. 4. Ibid., p. 13. 5. Guillaume-Benjamin-Amand Duchenne de Boulogne, The Mechanism of Human Facial Expression, ed. and trans. R. Andrew Cuthbertson (Cambridge: Cambridge University Press, 1990 [1862]), p. 43. 6. Ibid., p. 2. 7. Darwin, The Expression of the Emotions in Man and Animals, pp. 305–6. 8. The University of Cambridge, Darwin Correspondence Project Emotion Experiment, (accessed 25 April 2015).

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9. For a recent critique of the universality hypothesis, see Rachael E. Jack, Oliver G. B. Garrod, Hui Yu, Roberto Caldara and Philippe G. Schyns, ‘Facial Expressions of Emotion are not Culturally Universal’, Proceedings of the National Academy of Sciences of the United States of America (PNAS), 109.19 (2012), pp. 7241–4. 10. Elaine Scarry, The Body in Pain (New York: Oxford University Press, 1985). 11. Joanna Bourke, The Story of Pain From Prayer to Painkillers (Oxford: Oxford University Press, 2014), p. 3. 12. Ibid., p. 5. 13. Geoffrey Galt Harpham, ‘Elaine Scarry and the Dream of Pain’, Salmagundi 130/131 (2001), p. 208. Quoted in Bourke, The Story of Pain From Prayer to Painkillers, pp. 4–5. 14. Bourke, The Story of Pain From Prayer to Painkillers, p. 8. 15. University of Colorado Boulder, ‘First Objective Measure of Pain Discovered in Brain Scan Patterns by CU-Boulder Study’, 10 April 2013 (accessed 11 July 2015). 16. Jonathan Cole and Shaun Gallagher, ‘Narrative and Clinical Neuroscience: Can Phenomenologically Informed Approaches and Empirical Work Cross-Fertilise?’, in this volume, p. 390. 17. Bourke, The Story of Pain From Prayer to Painkillers, p. 17. 18. Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (London: Penguin, 1990 [1963]), p. 15. 19. Darwin, Expression of the Emotions in Man and Animals, p. 15. 20. Duchenne reproduces a photograph of the head of the Laocoon in Human Facial Expression Figure 70, and quotes Winckelmann’s analysis on page 98. 21. Simon Richter, Laocoon’s Body and the Aesthetics of Pain: Winckelmann, Lessing, Herder, Moritz, Goethe (Detroit: Wayne State University Press, 1992), p. 31. 22. Nigel Spivey, Enduring Creation: Art, Pain and Fortitude (Berkeley: University of California Press, 2001), p. 28. 23. Winckelmann’s Gedancken über die Nachahmung der griechischen Werke in der Malerey und Bildhauer-Kunst was published in 1755, shortly before he left Dresden for Rome. Dresden was famous for its collection of casts of antique statues, and it was here that Winckelmann encountered a plaster copy of the Laocoon. 24. I have used Richter’s translation of Winckelmann, Laocoon’s Body, p. 44. 25. Lessing’s essay of 1766 was titled Laokoon: Oder über die Grenzen der Malerey und Poesie (An Essay on the Limitations of Painting and Poetry). Quotations are from Gotthold Ephraim Lessing, Laocoon: An Essay on the Limits of Painting and Poetry, trans. E. A. McCormick (New York: Bobbs-Merrill, 1962). 26. Spivey, Enduring Creation, p. 31. 27. Lessing, Laocoon, chs 23, 24 and 25. 28. Ibid., p. 127. 29. Martin Kemp, ‘The Mark of Truth: Looking and Learning in some Anatomical Illustrations from the Renaissance and Eighteenth Century’, in W. F. Bynum and Roy Porter (eds), Medicine and the Five Senses (Cambridge: Cambridge University Press, 1993), pp. 85–121. 30. Lessing, Laocoon, p. 127. 31. Ibid., p. 131. 32. Ibid., p. 128. 33. Ibid., p. 127.

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34. Umberto Eco, On Ugliness (London: Harvill Secker, 2007), p. 16. Eco’s companion anthology, On Beauty, was published in 2010. 35. Eco, On Ugliness, p. 16. 36. Quoted in ibid., p. 16. 37. Lessing, Laocoon, chs 2, 17. 38. See, for example, Susan M. Schweik, The Ugly Laws: Disability in Public (New York: New York University Press, 2009). 39. E. M. P., ‘My First Experiences as a Second Year’s Man’, London Hospital Gazette, III.5 (1896), pp. 89–90. Quoted in Bourke, Story of Pain From Prayer to Painkillers, pp. 192–3. 40. Bourke, Story of Pain From Prayer to Painkillers, p. 192. 41. Goffman, Stigma, p. 24. 42. The most important recent studies are those by Mitchell B. Merback, The Thief, the Cross and the Wheel: Pain and the Spectacle of Punishment in Medieval and Renaissance Europe (London: Reaktion, 1999) and Robert Mills, Suspended Animation: Pain, Pleasure and Punishment in Medieval Culture (London: Reaktion, 2005). 43. Esther Cohen, The Modulated Scream: Pain in Late Medieval Culture (Chicago: University of Chicago Press, 2010), p. 4. 44. Ibid., p. 5. 45. Hans Belting, The Image and its Public in the Middle Ages: Form and Function of Early Paintings of the Passion, trans. M. Bartusis and R. Meyer (New Rochelle, NY: Caratzas, 1990), p. 7; Suzannah Biernoff, Sight and Embodiment in the Middle Ages (Basingstoke: Palgrave, 2002). 46. Belting, The Image and its Public in the Middle Ages, p. 80. 47. Ibid., p. 82. 48. Julian of Norwich, Showings, trans. E. Colledge and J. Walsh, Classics of Western Spirituality Series (New York: Paulist, 1978), p. 178 (ch. 2, long text). 49. Merback, The Thief, the Cross and the Wheel, p. 20. 50. Gal. 2: 20. 51. Patricia Skinner, ‘Reading the Medieval Face and its Passions’, paper given at The Face and the Passions, Exeter University, 31 March 2014. 52. Susan Sontag, Illness as Metaphor and AIDS and its Metaphors (London: Penguin, 1991), p. 126. 53. Quoted in Eco, On Ugliness, p. 256. 54. Sel d’Or, ‘Notes on the Exhibition of the Photographic Society of Scotland’, in Photographic Journal 6.85 (1859), p. 8. Quoted in David Lawrence Coleman, Pleasant Fictions: Henry Peach Robinson’s Composition Photography (unpublished PhD dissertation, University of Texas at Austin, 2005), p. 118. 55. Wellcome Images (accessed 31 May 2015). 56. A hypochondriac tells her doctor that she has a pain in her heart whilst clutching the wrong side of her chest. Reproduction of a drawing after Beauchamp, 1932, Wellcome Library, London, ICV No 11813. 57. Lucy Bending, The Representation of Bodily Pain in Late Nineteenth-Century English Culture (Oxford: Clarendon Press, 2000), p. 4. 58. Ibid., p. 52. 59. ‘So the resolute men fight on, suffering, tormented, maimed; but their teeth are set and the light in their eyes is high, and never does their agony debase them’ (‘Laughing in the Face of Pain: The Fortitude of the Wounded’, T.P.’s Journal of Great Deeds of the Great War, vol. 2 (6 March 1915), p. 216.)

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60. Ibid., p. 215. 61. Suzannah Biernoff, Portraits of Violence: War and the Aesthetics of Disfigurement (Ann Arbor: University of Michigan Press, 2016). 62. Henry Tonks, ‘Notes from “Wander-Years” ’, Artwork, 5.20 (1929), p. 230. 63. The expression ‘necessary Inhumanity’ comes from Hunter’s introductory lecture to students, c. 1780, St Thomas’s Hospital Manuscript 55, Royal College of Surgeons, p. 182 verso. 64. Andrew Graham-Dixon, ‘Some Take the Venice Biennale Very Seriously Indeed; Others Regard it as the Eurovision Song Contest of Art’, The Independent (13 June 1995). 65. Bryan S. Turner, ‘Recent Developments in the Theory of the Body’, in Mike Featherstone, Mike Hepworth and Bryan S. Turner (eds), The Body: Social Process and Cultural Theory (London: Sage, 1991), pp. 24–5. 66. Entry for ‘abject art’ in the Tate Collection glossary (accessed 20 April 2015). 67. Nicholas Chare, Auschwitz and Afterimages: Abjection, Witnessing and Representation (London: I. B. Tauris, 2011), p. xvii. 68. Ofili, quoted in Julian Stallabrass, High Art Lite: The Rise and Fall of Young British Art, revised edn (London: Verso, 2006), p. 207. 69. Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, Medical Humanities 37 (2011), pp. 73–8. 70. Chare, Auschwitz and Afterimages, pp. 62, 69. 71. Ibid., pp. 60, 69. 72. Julia Kristeva, Revolution in Poetic Language, trans. Leon S. Roudiez (New York: Columbia University Press, [1974] 1984), p. 208. 73. Scarry, Body in Pain, p. 6. Quoted in Chare, Auschwitz and Afterimages, p. xvii. 74. Julia Kristeva, Powers of Horror: An Essay on Abjection, trans. Leon S. Roudiez (New York: Columbia University Press, 1982), p. 11. 75. Ibid., p. 1. Italics in original. 76. Ibid., p. 10. 77. Michael Kimmel, ‘Properties of Cultural Embodiment: Lessons from the Anthropology of the Body’, in Roslyn M. Frank, René Dirven, Tom Ziemke and Enrique Bernárdez (eds), Body, Language, and Mind, vol. 2 (New York: Mouton de Gruyter, 2008), pp. 99 and 101. 78. On the principle of ‘spectatorial sympathy’, see Karen Halttunen, ‘Humanitarianism and the Pornography of Pain in Anglo-American Culture’, American Historical Review, 100.2 (1995), p. 307, n. 8. 79. Quoted in Michelle Hirschhorn, ‘Orlan: Artist in the Post-Human Age of Mechanical Reincarnation: Body as Ready (to be re-)Made’, in Griselda Pollock (ed.), Generations and Geographies in the Visual Arts: Feminist Readings (London: Routledge, 1996), p. 126.

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10 THE BODY BEYOND THE ANATOMY LAB: (RE)ADDRESSING ARTS METHODOLOGIES FOR THE CRITICAL MEDICAL HUMANITIES Rachael Allen

‘Dispel from your mind the thought that an understanding of the human body in every aspect of its structure can be given in words.’ Leonardo da Vinci1

I

will never forget my first encounter with a corpse on entering the anatomy lab that day, unaware of the journey ahead and the profound influence these donors would have on my work as an artist. Inside here, I am grounded in a sense of belonging. Using my eyes as dissecting tools, I flay the layers of skin and fascia to reveal the inner world of strangers that are at once familiar and unknown. I am held in a momentary state of reverie. I draw to awaken my senses to their corporeality. I draw to access my emotions and imagine their bodies in motion. I draw because words are not enough. Bearing witness to these anatomies ‘in the flesh’ is rooted in the cultural history of human anatomy and dissection: the meeting of artists and anatomists around the dissecting table; the public spectacle of ritualised dissections in Renaissance anatomical theatres; the study of anatomy in institutions; the contentious display of dead bodies in Gunther von Hagen’s Body Worlds, to name a few. Our bodies have commonly been understood by both medical and lay people as a biological machine of sorts and an image ‘embedded in popular culture and sustained in the anatomy lab’.2 First-hand experience of anatomical dissection has become a guarded professional ritual and a marker of special knowledge that depends on the violation of the taboo (access to the interior of the body and to death): ‘The anatomy theatre lies at the mysterious heart of medicine in the public fantasy and the professional imagination.’3 Categorical, turbulent and romantic accounts of human dissection have circulated widely over the centuries, through prose, poetry and the arts,4 and it is precisely because of the body’s moral centrality that it can be used subversively by contemporary artists today.5

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The anatomised body, as explored by these artists, poses ethical questions to evoke direct resonance with our common experiences as living bodies and beings. They educate us, confront our perceptions and entertain our sensibilities about our corporeal bodies, both inside and outside the hermetic spaces of twentieth- and twenty-firstcentury medicine, whose ethics have determined that the display of the anatomised body should be limited to ‘neutralised’ scientific and scholarly contexts.6 Why, then, am I here in the anatomy lab? What is my role as a visual artist inside the homeland of medical education? It began in 2011 when I launched Project ANATOME, initiating my role as artist in residence (AIR) within university anatomy laboratories in the North-East of England. The project emerged from the interest in ‘opening up’ (ANA) and ‘a cutting’ (TOME) of anatomical pedagogy to create a dialogue between artistic methodologies, sensory approaches to anatomy and experiences of the rites of passage. What began as a calling to study gross anatomy turned to an interest in education and the desire to work collaboratively with anatomical sciences to explore the extraordinary means by which the dead teach the living. My residence in the lab is at the centre of my practice-led research investigating anatomical material to explore the dead body and its implications for experiences of embodiment, health, illness and pain in the living body. It informs my art-making and aids the design and integration of arts methodologies into undergraduate medical education to enhance the student learning experience, the latter being one focus of the medical humanities over the past thirty years. However, the shift from a biomedical to a biopsychosocial perspective of the body in the later decades of the twentieth century is thought to be influencing the way anatomy is being taught, most notably with the decline in dissection and even the withdrawal of cadaveric specimens all together in favour of examining, visualising and imaging the living body in the clinical setting.7 Consequently, the context of the anatomy lab could be considered to have less relevance to the wider concerns of medicine with respect to treatment, practice and research within clinical healthcare, subsequently calling for the medical humanities to widen its focus beyond the site of anatomy education towards more ‘critical’ engagement with the bodies beyond the lab. Given this, I question again: Why am I still here in the anatomy lab? More broadly, how does visual art exploring the anatomised body contribute to a critical medical humanities? Suffice it to say that, without explanation, my curiosity about anatomy, death and dissection runs the risk of seeming purely macabre and sensational, with my presence in the lab as ambiguous and fruitless. In this chapter, I offer answers by reflecting on my journey as a visual artist meandering through the landscape of knowledge, methods, practices and people that constitute the terrain of anatomy education. My mode of exploration has enabled artistic processes, experiences and experimentation to have precedence over final arts outcomes and quantifiable results, activity that I recommend the critical medical humanities takes heed of in this chapter. To date, it has been my work integrating arts methodologies into medical education that has achieved most recognition by the medical humanities, with my broader practice-led research and artwork failing to garner of the same attention. These are

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grounds for concern, suggesting three major limitations. Firstly, such instrumentalisation of the arts to serve medical education impacts on the artists’ sense of autonomy; the demand for methodological and pedagogical approaches negates the artist’s freedom to experiment. Secondly, visual artists commonly sit on the periphery of critical engagement, reduced to offering merely complementary visual ideas; as illustrators of theory they remain otherwise entirely invisible. These are both potentially dangerous, as they maintain the impression that the arts are lowbrow and frivolous contributions, with the recent cuts to UK arts funding compounding this. Thirdly, and most significantly, why should visual arts methodologies be limited to education when there is a whole community of medical and humanities researchers who could benefit from engaging with creative–reflective knowledge production using more aesthetic and sensory means of understanding the social, political, emotional and spiritual factors that impact upon the human body and experience? I envisage a critical medical humanities that will widen the fissures where visual arts currently reside and invite contemporary artists to position themselves at the heart of its agenda. Paul Ulhas Macneill expresses great concern about the portrayal of the arts as benign, servile and passive in relation to healthcare education; the arts should not be seen to be in service to the curriculum but allowed to have their own impact, which he believes lies in the capacity to engender critique.8 He insists that the value of art is its open-ended support of questioning and its potential to ‘enliven and animate . . . and develop new forms of engagement that allow for participation and discovery through enactment and embodiment and not just through abstraction or theory’. Acknowledging that this is still an instrumental use of the arts, Macneill’s approach is none the less based on respect for each artwork in and of itself.9 Alan Bleakley likewise believes the contemporary medical humanities are failing in their critical approach to avant-garde arts such as radical performance, and that such an approach is ‘political and practical, as well as aesthetic and ethical’.10 Ludmilla Jordonava also insists on the potential for avant-garde art to have a critical impact on the medical humanities by suggesting the importance of involvement of contemporary artists who take pleasure in challenging norms and conventions, and trade on human curiosity to explore the limits of decency and voyeurism. Avant-garde art, she writes, ‘allows thoughts, feelings, reactions and fears to be articulated in public, and thereby to be opened up for critical inspection. How can we think about boundaries creatively if they are not being challenged?’11 I am enthused by these scholars’ visions and believe my work can contribute to their materialisation. I fully acknowledge the concerns and limitations of positioning my practice-led research in a context seen less as a site of research and experimentation and more one of education, especially as these relate to my primary role as an ‘instrument’ to enhance students’ learning. In this chapter, I confront these issues by demonstrating how my research inside the anatomy lab is wholly valuable in generating lines of inquiry about the anatomised, pathologised and medicalised body in contexts beyond the lab – the foreign body, the vulnerable body, the dead body, the operative body, the body as material – which are also subjects (and objects) for the contemporary artists I discuss.

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At the same time, I appreciate the anatomy lab is only one site within the medical humanities where visual arts has found a role, however paramount I regard it to be. This expansion of focus on the body beyond the anatomy lab that I am calling for also applies more broadly to visual arts researching the body in health, illness and death beyond clinical spaces, such as holistic health clinics, patient therapy groups, hospices and residential care homes, amongst others, which are areas for future study. I argue that the visual arts should not be a means to an end of humanising medical practice, but be pioneering in the critical medical humanities by offering new ways of thinking about the body aesthetically, ethically, politically and globally, in life and death. Expanding beyond the instrumentalisation of the arts in medical education towards a more ‘instrumental’ role, I insist on a place for visual arts – object-based, performance, new media – to be tools for research and experimentation for the wider community of academics and practitioners, exchanging visual and sensory languages with artists whose autonomy is maintained as co-inquirers. These protocols are only achievable if the critical medical humanities upholds interdisciplinary knowledge exchanges across disciplines in which the visual arts are accorded equal status. More radically still, I propose the call for more visual arts practices to become sites of experimental ‘entanglement’ – drawing from Felicity Callard and Des Fitzgerald’s chapter in this volume – where the concerns, objects, methods and preoccupations of artists, clinicians, academics and the public are not wholly separated or dissociated, but deeply intertwined.12 Moreover, with the visual arts residing and functioning exclusively in public arenas – galleries, museums, media – there is great potential for the emerging field to examine how social, cultural and political understandings and perceptions of the human body inside (and outside) the anatomy lab may operate in public spheres if it were to advance and promote interdisciplinary research with the public.

The Senses in Anatomy and Visual Arts ‘The most alarming moments of anatomy are not the bizarre, the unknown. They are the familiar.’13 Christine Montross, Body of Work: Meditations on Mortality from the Human Anatomy Lab Viewing the body inside the anatomy lab invokes emotions, sensations and associations that extend the breadth and depth of human experience (Figure 10.1). In previous work, I have drawn on my experiences to speak about how interaction with the visual arts can help students explore perceptions of the human body and offer ways to recognise, access, accept and express emotions. In order for medical students to acquire a mastery of the body as a system of motion, but also emotion, they must access the sensual side of anatomy.14 The role of the senses in knowing, perceiving and experiencing the body is the thread weaving through this collection of chapters. Most significantly, the historical perspectives on anatomy and the senses, as explored in Jennifer Richards and Richard Wistreich’s ‘The Anatomy of the

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Figure 10.1 The Anatomy Lab, 2012. © Rachael Allen. Renaissance Voice’ and Cynthia Klestinec’s ‘Touch, Trust and Compliance in Early Modern Medical Practice’, are pillars to support my call for more visual and sensory languages to research the anatomised body in our contemporary context. Richards and Wistreich consider the oral and aural dimensions of anatomical experience in the Renaissance and point towards the potential absence or loss of ‘something’ – of knowledge, perspective and experience – through advances in scientific ways of ‘seeing’ the body. This is precisely why the multi-sensory approach of contemporary arts lends itself so well to investigating and representing the anatomised body, and I stand firmly in support of their questioning in its broadest sense: ‘What different ways of knowing might an approach that is observant of and articulated through all the senses, voicing and listening as well as seeing and touching, enable?’15 Klestinec engages more with the action of sensing through the study of touch in early modern medicine. She focuses on the descriptions and vocabulary of touch as a way to reflect on the implied moral character and technical skill of the practitioner, particularly the distinction between the harmonious, ordered and artistic skill of the surgeon and the brutal, deforming cuts of the anatomist. The anatomised bodies I refer to throughout the chapter are never without their ‘anatomiser’: the anatomist, surgeon, pathologist, clinician, radiographer, medical student, artist. Applying Klestinec’s concept of touch as symbolic of meaning to the anatomised bodies in the work of contemporary artists opens a space to explore the ways our bodies are ‘touched’ in pursuit of

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knowledge, intervention and disposal, and more specifically, how the visual arts can adopt a diversity of sensorial methods and materials to exploit the viewers’ interaction with represented bodies, giving them an active role as ‘anatomiser’ or passive role as ‘voyeur’ where the invitation to touch can bring them into closer proximity with the authentic body. I revisit these authors’ historical ideas throughout the chapter to highlight the meaning, execution and impact of the senses in the contemporary artworks discussed. Sensorial and emotional interpretations are keystones in the visual arts, just as the role of the senses is imperative to experiencing the anatomised body. To quote Bauhaus artist László Moholy-Nagy, the arts transform Weltanschauung (‘world view’) into emotional form ‘with means largely comprehensible by sensory experiences on a nonverbal level’.16 I wonder, then, about the wider community of medical humanities scholars and practitioners, and the role of the emotions in engaging with the corporeal human body outside of intellectual and verbal discourse. Indeed, if the visual arts hold keys to unlocking emotions from reflexive, empirical grounds, then engagement with artistic work exploring the anatomised, pathologised and medicalised human body can provide access to complex landscapes of corporeal consciousness and experience. It is clear to me, then, that the focus of visual arts in medical humanities must not remain within the educational setting of medicine. Rather, the ways in which the wider critical medical humanities can highlight the capacity for visual arts to underline, stretch, evolve and transcend collective disciplinary knowledge of the body must be taken seriously.

The Body Beyond the Anatomy Lab: Visual Arts for the Critical Medical Humanities As an observer in the lab, I am privileged to see beyond the specimen as an object for anatomical knowledge, whilst accessing thoughts and feelings about the personhood of the donor (Figure 10.2). Even in death, dissection and depersonalisation, the bodies of strangers appear at once grossly unfamiliar and identifiable, peculiar and recognisable, bringing to the surface notions of the personal and universal body. I am constantly moved by the immense potential these donors have – bodily and existentially – to deepen understanding of the human as a corporeal being that operates within social and cultural spaces. While my experience is of the anatomy lab, associations emerge in any context that accommodates the dead or anaesthetised body for the purpose of investigation, examination, pathological procedures or experimentation: the morgue, the operating theatre, pathology and human tissue culture laboratories. Contemporary visual artists are drawn to these sanctioned spaces where access is strictly limited to professional bodies: an attraction, I would surmise, that is a mirror of our cultural curiosity about interiority, hinged on the desire to gain access to the taboo of the dead body and to raise ethical questions about whether working with the bodies of deceased and anaesthetised persons is ethically acceptable for the sake of art. Adopting visual arts as their inquirer, the human tissue inside these spaces serves as their objects and subjects.

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Figure 10.2 The Anatomy Lab, 2012. © Rachael Allen. Here is where I throw open the doors to these spaces and invite you to bear witness to the human body in the hands of contemporary artists. Glimpses of my encounters in the anatomy lab interplay with the anatomised, pathologised and medicalised bodies in the work of Mona Hatoum, Franko B, Teresa Margolles, Max Aguilera-Hellweg and bioartists Pete Clancy and Helen Pynor. They speak in remarkable ways about identity and embodiment by offering access to visual, intellectual and emotional representations of the foreign body, the vulnerable body, the dead body, the operative body and the body as material that is socially, culturally and politically contingent and influenced by what postmodernist analysts see in the body: a space for the inscription of social and political power. In what ways are these bodies ‘inscribed’ with meanings from the dominant discourses of the spaces they reside in? How are we entangling our practices with those of medical, forensic and human sciences to experiment with the concerns, preoccupations and objects of knowledge relating to the human body? Are we exploiting their materials, practices and environments as a means to produce artworks? Ultimately, we are able to ask questions that go beyond the ethical and political constraints of the medical and biosciences. I avoid formal, fixed accounts of the artists’ work in favour of a series of discussions to which readers can bring their own interpretations and references. Imagine

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you are viewing these bodies for the very first time. Like my initial encounter with a corpse, your senses will never allow you to forget.

The Foreign Body On any given day in the anatomy lab, I find myself surrounded by twenty to thirty bodies, in parts. The sheer volume of anonymous prosections has a disabling effect on me as I grapple to contemplate the mass of lives once lived. In the hands of inquisitive students and as the property of medical institutions, these body parts of strangers are objects of study, to be preserved and maintained until disposal (Figure 10.3). You enter a cylindrical space with padded walls and stand directly on a shoulderwidth projection of an endoscopic image in motion, threatening to swallow you up in its globular abyss. This is a journey through the bodily orifices and openings of artist Mona Hatoum (living in the UK, born in Lebanon and of Palestinian origin), made possible with the use of medical imaging technology that turns the uttermost interior realm outward. Hatoum notes that ‘the internal workings of our body are completely foreign to us most of the time . . . we don’t have access to our insides except when, you know, we go to hospital and discover we have a terrible disease’; for her, endoscopy and colposcopy procedures are ‘the ultimate in the invasion of one’s boundaries’.17 Although the artist underwent these procedures voluntarily (with stringent insurance policies in place and the assistance of a doctor), Corps étranger (1994) alludes to the

Figure 10.3 The Rites of Passage, 2014. Pencil on paper, wooden frame, soil from Zakynthos. © Rachael Allen.

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notion of medical practices as invasive and trespassing. Could the same be said for anatomising and dissecting the body in the lab? Such procedures are a journey into the depths of the body and at the same time a confusing metaphorical expedition into the unknown regions of the self. The feeling of alienation and the realisation that the other is anchored in one’s own body are used by Hatoum to draw a line between the self and the material world, while at the same time blurring it.18 The body/self are incorporated. As Amelia Jones writes, ‘Hatoum presents a body that is medicalized, merging interior and exterior and fundamentally overturning the notion of the body as a container for the self.’19 Is there any ‘self’ at all in this medicalised body? Is this what Hatoum is alluding to? Bearing witness to the inside of the body, whether that be of a stranger in the gross anatomy lab or through medical imaging, we relate to the notion of the body as ‘foreign’, albeit through varying degrees of sensory encounters. As suggested by Richards and Wistreich’s chapter, maybe something important is lost in just ‘seeing’ our interior topography, and perhaps this is exactly what Hatoum is implying. What is more prominent with Corps étranger is the discourse surrounding the ‘self’ as implied by medical imaging, and the notion of the body as a container, which is irrelevant to the context of the dead body – or is it? When artistic meets medical meets human, in galleries, laboratories and virtual spaces, we open up to moments and processes that are produced in the experimental and serendipitous encounters of disciplinary differences. Hatoum is exemplary in this entanglement of methods, having sought a medical tool as her artistic material and challenging the notion that medicine has sole ownership of imaging our insides, whilst also inverting the control that medicine typically has over bodies by being active in its administration.

The Vulnerable Body Assuming the anatomical position, the donors’ bodies await inquisitive hands with sharp implements, starkly naked bar the soiled sheeting that shrouds their heads, preserving their dignity. This is the ultimate vulnerable body: unable to feel, respond, oppose, exit. For many of the students active in dissection, I witness a distinct sense of responsibility and pride in their demeanour. For others, this is apparently nullified. The relationship between the body and power – of student and donor – is acutely evident. According to Michel Foucault, the body transformed into a territory of experimentation becomes ‘directly involved in a political field; power relations have an immediate hold upon it; they invest it, mark it, train it, torture it, force it to carry out tasks, to perform ceremonies, to emit signs.’20 Best known for his blood-letting performance, I Miss You! (1999–2005), Londonbased Italian artist Franko B moves in this context where body and power become inescapably evident. Painted head to toe in white, he parades down a brightly lit catwalk (also white) with his veins open, leaking blood. As the performance progresses, the canvas of his body and catwalk gradually run red. In the act of inverting the

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internal/external relationship of the body, Franko B puts his most intimate and hidden dimension on show: ‘My work presents the body in its most carnal, existential and essential state, confronting the human condition in an objectified, vulnerable and seductively powerful form.’21 In using his own naked body as a site for visceral acts, a tension exists between the exposure of his personal vulnerability and his redeeming of power through self-wounding, but also the power he has over his audience. The artist’s blood forces its witnesses from the wings of the catwalk to reconsider their own bodily vulnerability through the immediacy of intercorporeal relations. Franko B is not ‘representing’ his body; he is delivering it. This offering of a complete sensory experience for his viewers resonates with the oral, aural and fleshy experiences of Renaissance anatomy, as explored by Richards and Wistreich. These controversial live performances deal with authentic bodily processes and the body as a site of experimentation and expression, where artists push their own bodies, and often those of others, beyond physical and psychological limits. Its actions and residues are not just the subject, but also the material object, of art. It is my strong conviction that this genre of performance art should not be the exclusive concern of art history and criticism, but that it is valuable to other disciplines seeking to understand perceptions of the body as hinged between nature and culture, ‘the personal as political’, objecthood and subjecthood, the biological and the psychical. Always speaking hic et nunc, these bodies perform in real time, their corporeality inescapable and undeniable. For scholars of the medical humanities, these live performances offer an experience incomparable to textual representation; the flesh is warm and the blood runs real. The very fact that Franko B seizes the medical authority to have intravenous equipment administered for the purpose of performance thwarts the notion of medical power in itself, raising interesting questions about the relationship between the artist and the medical professional within the context of performance art. Who has privileged access to and knowledge of the body as an object that bleeds, the artist or the medic, or indeed, the audience? I would suggest us all.

The Dead Body Unsurprisingly, the dead body is absolutely central to my observations in the lab. Reflections on the body as a site of curiosity, tribute and even mourning manifest during the time I spend in close proximity with the donors. I am overcome by the smell of formalin, not the stench of decay, but nevertheless I am present and awake to the very materiality of death and the juxtaposition of my presence as a living, breathing, metabolising body. I feel the aversion – the threat of the ‘abject’ – and intentionally welcome its presence, hold it close, for it transports me into other areas of consciousness that dwell in the recesses of my living. Observing the donors in varying states of dissection, time seems to freeze, concentration fixes and drawing flows as a process of contemplation. I wonder what it would be like to take up permanent residence in the lab, make it my studio and the bodies my material, so to speak.

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In 1989, a Mexican graduate of art and forensic medicine, Teresa Margolles, joined a group of radical artists, musicians and performers to form Servicio Médico Forense (Forensic Medical Service), who occupied municipal morgues as studios and turned the refuse of crimes into an artistic medium. When the collective disbanded in 1999, Margolles continued working from her studio–morgue in Mexico City. The space bears witness to intense social unrest with numerous, usually anonymous, victims of violent crimes dispatched there on a daily basis. Margolles’s study of death relates to a deeper interest in socioeconomic inequality, the way violence shapes cultural and philosophical landscapes of society and traditional mourning procedures and rituals that surround death, which are as much a product of social and economic circumstance as life itself. In her earlier object installations, she exported waste products from the morgue into public art arenas, rather than dead bodies themselves. En el aire (In the Air, 2003) consists of a gallery space filled with bubbles made from the discarded water used to wash corpses before autopsy. Papeles (Papers, 2003) are sheets of watercolour paper washed in the same discarded water that absorbed blood and other organic materials. Entierro (Burial, 1999) is a small concrete block that sits in the middle of an empty gallery space, containing the body of a stillborn child (in Mexico, intra-uterine death is considered ‘medical waste’). For the 2006 Liverpool Biennale, Margolles created Untitled 2006, a large metal sculpture with a hot plate on the top surface that intermittently received drops of the same morgue-originating water, sounding a loud, sharp hiss and surrounding the gallery viewers with its evaporating vapour. The sight, smell and sound resulting from the piece provide a multi-sensory experience of the physical traces of death. Once again, I reflect on the historical studies of Richards and Wistreich, and of Klestinec, which place emphasis on the senses as key to unlocking knowledge of the body (in the first instance) and specifically touch as a way to speak about the moral disposition of the ‘other’ in contact with the body (in the second instance), where the detritus of dead bodies can be, quite literally, touched by viewers of Margolles’s installations. What does it mean to touch the bodily remains of dead strangers in the context of art? Converting the morgue into her studio, the artist blurs the lines between her artistic objects of knowledge and practice with that of forensic sciences: a fine example of entanglement playing out as the mixing of knowledge, materials and practices without first adjudicating to which ‘discipline’ each part of the mixture is beholden.22 The dead body as corporeal material, as a social entity, as a site of mourning, as contingent to socioeconomic inequality, is no more or no less the concern of an artist than it is of a forensic scientist, however subtle it may be in the latter. Yet it is Margolles that entwines arts and forensic methodologies in symbiosis by virtue of her professional experiences. This double training and status in such divergent areas is relatively uncommon and presents questions about what it means to possess dual authority in artistic and scientific fields. For Margolles, is it a case of internal entanglement of knowledge and methods? Does her qualification as a forensic scientist help her surpass the ethical quandaries associated with using human remains in her artworks? The critical medical humanities would do well to engage with this kind of interdisciplinary approach with visual artists to reach full realisation of the impact such

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experimental and radical moves can have on researching the body in life and death. As with any interdisciplinary work of this nature, ideas of language, (mis)communication and translation are central. To navigate between the languages of the arts and forensic sciences is to traverse changing fields: a journey that could lead artists, academics and practitioners to unexpected places rich in alternate ideas, and grant access to the blind spots in which their own disciplines reside.

The Operative Body Hunched over the open thorax of a freshly dissected man with organs in situ, I try to imagine him alive: kinetic, beating, breathing. I look inside with a heightened sense of wonder and try to imagine his insides fully animated. At times, I imagine departing the anatomy lab, leaving the dead, and taking up residence in the operating theatre to witness the body in the hands of the surgeon: to observe medicine in action, the intervention of technology, and all the power it poses over the living body, to behold the vulnerability from the wings of the operating table where the patient’s anaesthetised body awaits the success or failure of procedures (Figure 10.4). Many artists and writers have entered the operating theatre to witness the work of surgery, with the experience of American photographer Max Aguilera-Hellweg

Figure 10.4 (Detail) Unclassified (BMJ 207–11). Extracts from British Medical Journal, 2012. Pencil on paper. © Rachael Allen.

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being one of the most extraordinary and moving examples. The experience literally changed his life. Back in 1990, the photojournalist was assigned to photograph a neurosurgeon for Savvy magazine, an event that inspired such awe, wonder and curiosity in Aguilera-Hellweg that he spent the next eight years plunging into the realm of operating-room photography, moving through cranial–facial surgery, penile implants, mastectomies and eye surgery. His resulting publication, The Sacred Heart: An Atlas of the Body Seen Through Invasive Surgery, opens the doors to the operating theatre through the medium of still photography, capturing anonymous physicians and patients in the act of surgery, revealing what the body (our bodies) look(s) like under the knife (Figures 10.5–10.8).23 In the afterword to the book, A. D. Coleman reflects on how Aguilera-Hellweg’s sense of astonishment, curiosity, reverence and awe emerge palpably from these pictures, as does his perception of what one might call the ‘theatre of operations’, with the limitations and transmutability of flesh being the key issues.24 The sense of wonderment that emerges when engaging with his photographs is akin to the wonder Martyn Evans writes about in his chapter for this volume, with his belief that it can guard against simplistic opposition to medicine’s material conception of the body.25 Evans asserts the importance of an openness to wonder in the clinical encounter – the ‘theatre of operations’ included – to maintain recognition of our mortality and our finitude as both agents and objects: the

Figure 10.5 Laminectomy: the back of five vertebrae removed to relieve pressure on the spinal cord in a patient who presented with a sudden-onset paralysis, 1997. © Max Aguilera-Hellweg.

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Figure 10.6 Harvest for cornea transplant, 1997. © Max Aguilera-Hellweg.

Figure 10.7 Craniofacial reconstruction in an adult with Crouzon syndrome, 1997. © Max Aguilera-Hellweg.

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Figure 10.8 Arm of a 23-week-old foetus, as exhibited to photographer by surgeon during open prenatal surgery, investigative clinical trial, to correct spina bifida, 1997. © Max Aguilera-Hellweg. life of the patients in the hands of the surgeon, limited to flesh and blood. With the anonymity of both patient and physicians in the photographs – nameless, faceless, storyless – we have no one with whom to identify except the material living bodies undergoing procedures, which we cannot help but imagine and ‘wonder’ as our own. For Aguilera-Hellweg, the initial call to photograph a spinal surgery turned into a calling on a much more personal level: ‘From my very first surgery I knew that I wanted to be a doctor. I want to be around this for the rest of my life.’26 At the age of 47, he acquired his medical degree from Tulane University School of Medicine, New Orleans. Approaching questions about his departure from photography, he answers confidentially that he is actually pushing photography and art to its limits by becoming his own subject: ‘Part of the whole equation that led me into this is that to me art isn’t just what you’re doing on a two dimensional piece of paper but it’s what you do with your life.’27 In not separating art, medicine and life, Aguilera-Hellweg sees it all as a continuum where one is no more an ivory tower than the other, hidden away in some exclusive way that can only be understood on an intellectual basis.28 In conversation with the photographer for this chapter, he spoke boldly with me about his professional journey whilst alluding to how disciplinary shape-shifting is perceived: ‘There’s these walls that don’t really exist for me . . . people think that things are so precious . . . all this stuff is a journey, one thing led into another and another and another . . . I didn’t know where my camera would take me.’29 With this, I believe he is touching on the essence of mixing artistic and scientific professions for

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contemporary artists, exemplifying the notion of journey and process with its unpredictable directions and obstacles, not dissimilar to life, which is an interesting concept for the critical medical humanities to interrogate.

The Body as Material Assuming a front-row seat as a spectator of anatomical education, my involvement is limited to observational and kinaesthetic studies. I can look, touch, draw and write, but am prohibited from performing any procedures such as embalming, dissection or prosection, which are duties understandably performed only by certified technicians. While carrying out such procedures would undoubtedly bring me closer to the bodies as material, as teachers, as people, I am permitted only to observe them with a heightened sense of awe. Continuing to investigate the possibility of such feats, I incorporate dissection and drawing into my studio practice and performance work using humanely reared rodents sold as reptile food – rats, mice, chicks, gerbils, hamster, rabbits – to experience the process of dissection in the flesh (Figure 10.9). This work is not dissimilar to the practice of contemporary taxidermy artists, except my focus is solely on the processes and procedures of dissection (and disposal), as opposed to preservation and display.30

Figure 10.9 (di)ssection, two-hour performance, 2013. © Rachael Allen. (di)ssection is the performance of a (dead) rabbit dissection, instructed by Grants Dissector (12th edition). The performance explores the problematic nature of executing human dissection to acquire the mastery of principle anatomy, reflected in the increasing decline of dissection practised in anatomy education: literally, the ‘death’ of dissection.

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Created by artists Peta Clancy and Helen Pynor, The Body is a Big Place (2011) is a live biosculpture installation including a five-channel video projection, heart perfusion device and soundscape (Figures 10.10 and 10.11). It is mesmeric in scale and content, the viewer witnessing the perfusion of fluid through two fresh pig hearts that are at first inanimate, then moments later are beating. Recreated live for individual exhibitions, the performances carry a 50/50 success rate, which pertinently mirrors the very real risk associated with human organ transfer. Writing in response to the work, Aleksandra Hirszfeld translates this intense moment into the viewers’ questioning: is the heart still ‘alive’[?] . . . What is ‘this moment’ when you remove an organ from a body that has been pronounced clinically dead, and then transfer it to another body? Was this organ alive or dead at the time of ‘transition’?31 Hirszfeld refers to the evocative title, The Body is a Big Place, suggesting that the work shifts from the perception that our body is integrally whole, toward a notion that the body occupies a vast space and is composed of fragmentary and nomadic components that can traverse large geographical, temporal and interpersonal distances,32 which of

Figure 10.10 The Body is a Big Place, 2011, Helen Pynor and Peta Clancy. Heart perfusion performance still. Left: Helen Pynor. Right: John Headrick. Five-channel video projection, heart perfusion device, single-channel video on monitor, soundscape by Gail Priest. Collaborating scientists: Professor John Headrick and Dr Jason Peart, Heart Foundation Research Centre, Griffith University, Queensland, Australia. Photograph: Geordie Cargill.

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Figure 10.11 The Body is a Big Place, 2011, Helen Pynor and Peta Clancy. Five-channel video projection, heart perfusion device, single-channel video on monitor, soundscape by Gail Priest. Collaborating scientists: Professor John Headrick and Dr Jason Peart, Heart Foundation Research Centre, Griffith University, Queensland, Australia. Photograph: Peta Clancy and Helen Pynor. course is what literally happens during an organ transplant. These artists contribute to the growing genre of Bio Arts, characterised by the blend of art, technology and bioscience using live tissues, bacteria, living organisms and life processes to create works of art that blur the traditional distinctions between art and science. They press much harder against social, ethical and aesthetic inquiry by virtue of manipulating living matter, which has been the focus of scholarly work since coming to the fore in the early 1990s, and must continue to be on the agenda for the critical medical humanities. It seems that Clancy and Pynor are ‘touching heart’ on two levels with their piece: the live reanimation of pig hearts via heart perfusion operates as the technical ‘object’ of inquiry, whilst the ‘personal’, ‘subjective’ and ‘emotional’ rub all around in their conceptual and metaphorical reference to the experience of organ transplantation. They are offering an intimate space to contemplate the emotional characteristics inherent to the medical practice, and to life itself. I think about Klestinec’s study of touch as an act that implies moral character and technical skill, and wonder if witnessing the act of Clancy and Pynor handling the pig hearts – incising, palpating, probing, massaging to stimulate reanimation – influences the viewers’ interpretation of and reaction to the artwork and the artists. Having undertaken technical training in organ

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perfusion, the artists are suitably equipped to demonstrate the necessary skill, but it is their physical interaction with animal organs in vitro – their touch – that invites moral interpretation influenced by the implicit ethical issues of their status as artists. Oron Catts, co-founder of SymbioticA – a bioartistic research centre housed within the School of Anatomy, Physiology and Human Biology at the University of Western Australia – admits to not subscribing to the hype generated by artists using science to engage with very extreme and precise ways of dealing with matter and life. Rather, he believes the logic that drives nanotechnology, synthetic biology and neuroengineering needs to be scrutinised and explored by people other than scientists and engineers (namely, artists).33 Here, he is pledging that the objects of knowledge and understanding owned by the sciences should be figured more artistically and experimentally, a view shared by Fitzgerald and Callard as exponents of deepening entanglements to reach more richly imagined, capacious domains for conceiving human life.34 It is this experimental approach to interdisciplinary research that puts the ‘critical’ in medical humanities by welcoming visual artists as vital bodies of analytical, interpretative and expository workings, as well as channels offering them into the public domain.

Readdressing Arts Methodologies It is precisely the capacity of the visual arts to facilitate expression from reflexive, empirical and intellectual grounds, to engender knowledge, emotions, critique and learning, and exploit methodologies across the universal spectrum of visual and sensory languages that sets it apart from other humanities and science disciplines. Looking beyond the role of the visual arts as a service and supplement to medical education, and indeed to medical humanities, in what ways can visual artists work within interdisciplinary mixes of academics, researchers, practitioners and the public to generate lines of inquiry about the body? How can artistic methodologies engage with the ontologies and epistemologies of other disciplines and practices? Now, I address the practical actions to begin this critical work. To move beyond having a supplementary role, the visual arts must be established as a vital contributor to ongoing research globally, generating new ways of thinking and championing new lines of inquiry. Individuals and communities within the medical humanities must widen their remit of disciplinary input for any given research activity to call on the involvement of visual artists. Conversely, it will be the responsibility of artists to scout and circulate news of art exhibitions, residencies, projects and publications that explore significant themes. The ever-increasing volume of traffic across internet blogs and virtual forums encompassing medical humanities discourse will facilitate this activity, encouraging new assemblages of artists, scholars and practitioners to go online and exchange ideas globally over virtual interfaces. Moving into reactive knowledge exchange across the arts and medical humanities calls for instating collaborative projects and research ventures where interests overlap and intersect. For new knowledge to emerge, artists, humanities scholars, healthcare practitioners, patients and the public must unite to exchange theories, concepts and

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experiences, and act in response to what they learn from each other whilst welcoming all the challenges and dividends that such an entangled interdisciplinary encounter presents. The varying forms of language in these exchanges must be carefully considered and all co-inquirers are to take responsibility for elucidating the content of their discourse so as to be understood by those outside their discipline. For artists to achieve this, they may introduce their co-inquirers to other artists, artworks and movements, facilitate empirical research in art contexts and recommend literature on art history and criticism. Importantly, financial support through grant schemes and scholarships for practice and research-led postgraduate studies must be established and sought out to enable specialist interdisciplinary research, which is evidently dependent on major funding bodies recognising the value and impact of such ventures. More ambitiously still, I argue that these interdisciplinary discourses should involve proactive communication and experimentation using more creative methods where artists will introduce visual and sensory methodologies such as drawing, object-based methods, photography, performance, visualisation and imaging techniques to other disciplines, immersing co-inquirers in alternative ways of engaging with their research subjects. To avoid artists becoming instrumentalised by this approach, they will also be proactive participants in the process of ‘swapping tools’ and be encouraged to take up new research methods from other disciplines whilst adhering to any ethical regulations and protocols. For example, artists would not be permitted to take vital readings from patients or to perform gross tissue dissection in the pathology lab. With a background in both philosophy and creative practice, artist and researcher Jac Saorsa blends methodologies and languages beautifully in her own practice: ‘Where philosophy involves concepts, and art involves percepts and affects, I understand my art practice as inseparable from my theoretical work. Each complements and reinforces the other.’35 In collaboration with patients and a gynaecological surgeon, her ongoing project, Drawing Women’s Cancer, explores the lived experience of gynaecological illness that builds on the premise that visual arts, philosophy and medical sciences all involve an inclusive form of ‘seeing’, and are brought into mutual relation with one another through the inclusive concept of language, with neither of these phenomena necessarily bound to the word.36 I believe the critical medical humanities would do well to learn from Saorsa’s approach to the inclusivity of language and make headway with initiating new interdisciplinary collectives mixing visual, sensory and theoretical research methods, where knowledge of the human body is not exclusive to any one language or discipline.

Ars Longa, Vita Brevis As visual artists practising at the nexus of arts and human sciences, we venture into sanctioned spaces where the bodies of strangers are anatomised, pathologised and medicalised: to observe, reflect and experiment, to communicate through visual and sensory languages, to ‘entangle’ our modes of knowledge and methods of practice, to extend the peripheral vision of scientists, clinicians, academics, researchers, patients and the public. We immerse ourselves in the dichotomies of the human body – inside/

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outside, object/subject, personal/universal – in search of the questions and quandaries that are pivotal to our condition as human bodies and beings. Through visual and sensory means, we present these to the public, throwing open the doors to spaces that have privileged access to our bodies, in life and death. It is time for the medical humanities to awaken to our proficiency as pioneers of innovative interdisciplinary work at the intersection of arts, humanities, medicine and the public, expanding knowledge of the human body and generating new lines of inquiry for more critically engaging research. Going against the grain of linear, programmatic, predictable approaches, we embrace challenges and risks, defy any discipline to have sole ownership of bodily knowledge. We can be controversial at times, but most importantly, we have the tools that can radically expand and destabilise understandings and perceptions of the body by the very means of its corporeal, emotional, multi-sensory qualities.

Further Reading Georges Bataille and Klaus Biesenbach, Into Me/Out of Me (Ostfildern: Hatje Cantz, 2007). Hugo Glendinning and Adrian Heathfield, Live: Art and Performance (London: Tate Publishing, 2004). Amelia Jones, Body Art/Performing the Subject (Minneapolis: University of Minnesota Press, 1998). Dawn Kemp and Andrew Patrizio (eds), Anatomy Acts: How We Come to Know Ourselves (Edinburgh: Birlinn, 2006). Francesca Alfano Miglietti, Extreme Bodies: The Use and Abuse of the Body in Art (Milan: Skira Editore, 2003). Arthur I. Miller, Colliding Worlds: How Cutting-edge Science is Redefining Contemporary Art (New York: W. W. Norton & Company, 2014). Christine Montross, Body of Work: Meditations on Mortality from the Human Anatomy Lab (London: Penguin, 2007). Sally O’Reilly, The Body in Contemporary Art (London: Thames & Hudson, 2009). Pascale Pollier-Green, Ann Van De Velde and Chantel Pollier (eds), Confronting Mortality with Art and Science: Scientific and Artistic Impressions on What the Certainty of Death Says about Life (Brussels: VUBPRESS Brussels University Press, 2007). Lea Vergine, Body Art and Performance: The Body as Language (Milan: Skira Editore, 2000).

Notes 1. Charles G. Gross, ‘Leonardo da Vinci on the Brain and Eye’, in Brain, Vision, Memory: Tales in the History of Neuroscience (Cambridge, MA: MIT Press, 1999), p. 105. Originally published in J. Playfair McMurrich, Leonardo da Vinci the Anatomist (Baltimore: Williams & Wilkins, 1930). 2. Philomena Horsley, ‘Teaching the Anatomy of Death: A Dying Art?’, Medicine Studies 2.1 (2010), p. 2. 3. John Bender, ‘From Theater to Laboratory’, Journal of the American Medical Association 287.9 (2002), p. 1179.

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4. Keyword (topic) search for ‘Anatomy’ on ‘Literature, Arts and Medicine Database’ (established in 1994 by New York University School of Medicine, to provide a resource for scholars, educators, students, patients, and others who are interested in the work of medical humanities) (accessed 15 February 2015). 5. Ludmilla Jordanova, ‘Happy Marriages and Dangerous Liaisons: Artists and Anatomy’, in Deanna Petherbridge and Ludmilla Jordanova (eds), The Quick and the Dead: Artists and Anatomy (Berkeley: University of California Press, 1997), p. 101. 6. Ibid., p. 96. 7. Jane Macnaughton, ‘Flesh Revealed: Medicine, Art and Anatomy’, in Corinne Saunders, Ulrika Maude and Jane Macnaughton (eds), The Body and the Arts (London: Palgrave, 2009), p. 76. 8. Paul Ulhas Macneill, ‘The Arts and Medicine: A Challenging Relationship’, Medical Humanities 37.2 (2011), p. 86. 9. Ibid., p. 89. 10. Alan Bleakley, ‘Towards a Critical Medical Humanities’, in Victoria Bates, Alan Bleakley and Sam Goodman (eds), Medicine, Health and the Arts: Approaches to the Medical Humanities (Routledge Advances in the Medical Humanities) (London: Routledge, 2013), pp. 23–4. 11. Ludmilla Jordanova, ‘Medicine and the Visual Arts’, Medicine, Health and the Arts, p. 61. 12. Des Fitzgerald and Felicity Callard, ‘Entangling the Medical/Humanities’, in this volume, pp. 35–49. 13. Christine Montross, Body of Work: Meditations on Mortality from the Human Anatomy Lab (London: Penguin, 2007), p. 13. 14. Rachael Allen, ‘Art Practice and Bringing Emotions to Life in the Anatomy Lab: The Story of an Artist in Residence’, in Cheryl L. Mclean (ed.), Creative Arts in Humane Medicine (Toronto: Brush Education, 2014), p. 83. 15. Jennifer Richards and Richard Wistreich, ‘The Anatomy of the Renaissance Voice’, in this volume, p. 277. 16. László Moholy-Nagy, Vision in Motion (Chicago: Paul Theobald & Co, 1947), p. 29. 17. Mona Hatoum, ‘Transcript of the John Tusa Interview with Mona Hatoum’, 4 August 2006 (accessed 30 July 2014). 18. Georges Bataille, Klaus Biesenbach and Susan Sontag, Into Me/Out of Me (Ostfildern: Hatje Cantz, 2007), pp. 57–8. 19. Amelia Jones, Body Art/Performing the Subject (Minneapolis: University of Minneapolis Press, 1998), p. 226. 20. Michel Foucault, Discipline and Punish: The Birth of the Prison, 2nd edn (New York: Vintage Books, 1995), p. 25. 21. Franko B, ‘I Miss You!’, in Hugo Glendinning and Adrian Heathfield (eds), Live: Art and Performance (London: Tate Publishing, 2004), p. 226. 22. Fitzgerald and Callard, ‘Entangling the Medical/Humanities’. 23. Max Aguilera-Hellweg, The Sacred Heart: An Atlas of the Body Seen Through Invasive Surgery (Boston: Little, Brown & Company, 1997). 24. A. D. Coleman, ‘Afterword’, in ibid., p. 113. 25. Martyn Evans, ‘Medical Humanities and the Place of Wonder’, in this volume, pp. 339–55. 26. Max Aguilera-Hellweg, ‘Interview by A. D. Amorosi’, 1997 (accessed 5 August 2014).

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27. Max Aguilera-Hellweg, ‘Photographer Max Aguilera-Hellweg Goes Inside the Human Body’, Interview (accessed 5 August 2014). 28. Ibid. 29. Skype interview with Max Aguilera-Hellweg; 10 January 2014). 30. Top 10: Taxidermy Artists (accessed 12 February 2015). 31. Aleksandra Hirszfeld, ‘Body is a Big Place (Helen Pynor and Peta Clancy)’, Art+Science Meeting, 2014 (accessed 27 July 2014). 32. Ibid. 33. Oron Catts, ‘Visceral curator: Making Art out of Living Tissue’, Culturelab: Where Books, Art and Science Collide’, New Scientist (accessed 5 August 2014). 34. Fitzgerald and Callard, ‘Entangling the Medical/Humanities’. 35. Jac Saorsa, ‘Dis/FIGURATION: Travels with an Artist’ (accessed 14 August 2014). 36. Jac Saorsa, ‘The Artist in Theatre: On the Primacy of the Subjective Narrative by Jac Saorsa’, BMJ Blogs (accessed 2 February 2015).

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11 TOUCH, TRUST AND COMPLIANCE IN EARLY MODERN MEDICAL PRACTICE Cynthia Klestinec

Introduction Face:

But Dol, ’Prithee go heat a little water quickly; Subtle must shave me. All my Captain’s beard Must off, to make me appear smooth Jeremy. You’ll do it? Subtle: Yes, I’ll shave you, as well as I can. Face: And not cut my throat, but trim me? Subtle: You shall see, sir.

T

his scene appears just before the climax of the widely read playwright Ben Jonson’s The Alchemist.1 Although Face and Subtle have proven themselves to be cut-throats – the word play is evident – they are also engaged, along with a third character named Dol, in a joint venture, one brokered on an exceedingly precarious notion of trust (that will evaporate in the final scenes of the play). There are references to poxes and bloodletting elsewhere in The Alchemist, but Jonson uses the ordinary experience of barbering, and the familiar relationship between barber and patient, to ponder the dangers of the razor. By way of that razor, the scene highlights the problem of trust between these tricksters. Note that Face needs a shave but that he acknowledges the potential dangers of his cohort’s touch. Can he trust Subtle? Specifically, can he trust Subtle’s touch and his use of the blade? Or, in Face’s words, ‘And not cut my throat, but trim me?’ Although the play conducts us through urban marketplaces, alchemical fantasies, the laboratory and vice, Jonson evokes a medical setting and the familiar encounter between barber and patient (client) to present a highly charged moment of estrangement and negotiation. Barbering was ordinary, a part of hygiene and a means for securing health.2 But in this newly competitive environment of the marketplace, both the relation between barber and patient and the activities of the barber are potentially transformed. Caught in a moment where the bond of trust may or may not solidify, the scene between Face and Subtle elaborates the problems of trust and, for Face, acknowledges the risk. Subtle reminds rather than diminishes the risk that Face, as it were, faces: ‘You shall see.’ Though it does not feature an actual shave, the scene offers

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the touch of the barber as a mechanism for establishing a trusting relationship and, less expected, an act that instantiates a bond of trust, much like a performative utterance.3 In The Alchemist, talk of touch becomes a way to talk about trust as well as a way to navigate risk, even among thieves. Touch, like our other sensory modalities, has been conceptualised and related to historical periods and cultural practices by a growing number of scholars.4 The early modern period (c. 1350–1650) has received special attention in this regard. According to Elizabeth Harvey, this is because, in it, we find ‘the nascent stages of a consolidation of beliefs about the body’s relation to knowledge, sexuality and reproduction, artistic creativity, and “contact” with other worlds, both divine and newly discovered geographical realms’.5 For histories of science and medicine, touch is often conceived in opposition to sight. For example, accounts of midwifery have been organised around the knowing and skilful touch of the midwife, and contrasted to the authoritative gaze of the male practitioner, who, it is alleged, never deigned to touch his patient.6 Though the opposition is used to highlight the professional and epistemological differences between practitioners, it also finds a place in what Martin Jay describes as the increasingly dominant vision-based paradigms of modernity.7 But even if vision has assumed a privileged role in a more complex ‘scopic regime’, the narrowed emphasis on the ascent of vision in overcoming touch blinds us to seeing or interrogating the features of touch that are more characteristic of cultural practices, which tend to be deeply embodied. Frameworks requiring a shift from multi-sensorial programmes or solely tactile ones to visual ones are, at best, inadequate.8 Engaging these issues, a critical medical humanities would foster inquiry into the senses, their relations and appropriations, and into the strategies of representation used to depict them, in all their complexity, as embodied experiences. One place where touch has played an increasingly constructive role is in recent studies of artisanal knowledge in the Scientific Revolution. Scholars no longer assume that intellectual (humanist) and manual labourers were entirely distinct; instead, they have explored the experimental practices of artisans and the exchange with humanists, and their insights have come to mark such seemingly different histories as those of experimental science and capitalism.9 These discussions have illuminated the trading zones between artisans and humanists, and brought attention to the practices of knowledge production in scientific and technological developments, expanding the role of touch outside the kind of medical context utilised by Jonson.10 Accordingly, touch has been framed through the investigation of the status, acquisition and epistemological import of manual skill. Though it has featured only partially in historical studies of medicine, scholars have begun to explore the touch of physicians, in clinical medicine and the acquisition of bedside skills, such as taking the pulse and palpating the body.11 Although these artisans and physicians represent opposite ends of the educational and social spectrum in the early modern period, the marketplace was full of encounters between people, ideas and beliefs. Indeed, the texts of the early modern period reveal an expanding and competitive marketplace for healthcare, populated by traditional practitioners such as physicians and alternative healers such as empirics, inundated with chemical medicines, and teeming with recommendations for lifestyle

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changes.12 Though this marketplace was not regulated as our own is, the parallels are striking. Amidst so much competition, claims to novelty, and lifestyle enhancements or remedies, we should ask not only how and why did a patient come to trust a practitioner or, better, comply with or adhere to his prescriptions, but also how did the relationship between patients and practitioners change as a consequence of the evolving marketplace? One way into this dark wood is to focus on touch and on its representation in the materials produced by medical practitioners, who were actively pursuing patients and crafting their reputations in the professional world of healthcare. Barbers, for example, knew that they served at the behest of physicians and skilled surgeons, who thus were an additional or even more primary audience for their materials. Their texts qualify their touch and that of their competitors in various ways. Their descriptions of touch coordinate the implied trust of the patient with the practitioner’s skill (via his hands or his instruments). These descriptions would seem to ask two different questions: Can his skill be trusted? and is he touching me for the right reasons? The first question called for the assessment of skill; the second pointed to the intentions of the practitioner and his moral character. There is a long-standing tradition in medicine of identifying the physician in terms of his moral character, but the link between touch and moral character has not been placed in a broader inquiry into touch nor has it been studied in the case of less learned practitioners, such as surgeons and barbers.13 This chapter places special emphasis on surgeons and barbers, whose texts – in this case, all Italian – provide a rich vocabulary for touch and indicate, pace Jonson, touch’s relation to trust as it was configured for and circulated within the medical marketplace. This chapter also encourages a more synthetic approach to the identity of these vernacular practitioners (social standing, stature and persona), one that includes a robust discourse on skill and remains sensitive to the influences or shaping force of the relationship with the patient. In addition, although practitioners praised their own touch and highlighted the errors and risky manœuvres of their competitors, as we would expect, their negative commentaries on touch often involved the knife, even when the critic, in the course of his own practice, used one himself. The risk that Face encountered was expressed around Subtle’s use of a razor, in addition to his own hand. This chapter attends to the increasingly careful distinctions that practitioners made when describing touch in order to argue that the negative portrayals of touch, which involved knives and other instruments, were a reaction to the practices of dissection and the learned or academic study of anatomy. Characterising these responses more fully will shed light on the relationship between anatomy and medicine, which was vexed rather than straightforward in this period. As we will see, the rhetoric of touch helped to shape a practitioner’s authority or to earn him a patient’s trust by denying the parallel between the anatomist and the medical practitioner.14 This chapter will also provide a set of examples to compare to today, thus stimulating future inquiry into the history of patient compliance or adherence. Based on this analysis, I conclude by relating touch to questions about patient compliance, which today is called patient adherence. Though we understand only part of the historical development of patient adherence as it emerged in legal settings, these texts point to some of the places where patient compliance or non-compliance was

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experienced in settings of care, where issues around trust, fear, willingness or wilfulness, and freedom of choice come to the fore.15 This suggests that the connections between touch and trust and the questions they raise around compliance should be central to our discussions of the early modern marketplace as it developed and as it altered the relations between the practitioner and the patient.

Medical Touch: The Problem with Anatomy In the late medieval and early modern period, the study and practice of anatomy brought special attention to the manual skills of dissection, which were used to isolate parts of the body, scrutinise their composition, and generate information for more general claims about their specific function and their general function (with respect to the whole body). Representations of an anatomist’s manual skill were subtle and nuanced, often displayed with texts and other objects associated with intellectual labour. For example, the author portraits of anatomists tend to depict them at work, where their hands command special visual interest. The portrait of Andreas Vesalius (1514–64) shows him next to the forearm and hand that he (presumably) has just dissected, and with a piece of paper, signifying Galenic anatomy, the role of commentary, and the continued importance of the textual tradition to his ‘new’ anatomy (Figure 11.1).

Figure 11.1 The author portrait of Andreas Vesalius, De Humani Corporis Fabrica (Basle: Oporinus, 1543). Courtesy of the Countway Library for the History of Medicine, Harvard University.

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Extending this theme, the anatomist, Iulius Casserius (1552–1616), emphasised the importance of manual techniques in his text and in his author portrait (Figure 11.2). The portrait depicts Casserius in the act of completing a dissection of a hand, having removed the ligaments and retracted the skin in order to reveal the internal structures and connecting parts. Note that, in place of the text, which appeared with Vesalius, Casserius is seen with instruments. While the portrait draws upon an iconographical tradition of representing the anatomist at work, Casserius’ portrait, as Elisabetta Cunsolo has explained, renders dramatic the delicacy of the operation and of the anatomist’s hands.16 Our eyes are drawn to Casserius’ hands, their gentle grasp and manipulation of the instruments; his hands, like his body, are carefully composed and engaged in the study of anatomy, not in a physical struggle with a resistant corpse. The delicate, skilled hands of the anatomist are reflected in the delicate anatomy of the dissected hand. The posture and the focus on the delicate, skilled hands of the anatomist, moreover, became a part of the iconographical depictions of anatomists at work. As Rebecca Messberger has explained in the case of Anna Morandi, a maker of anatomical wax figures, Morandi’s self-portrait draws attention to her hands, the instruments of her craft and their dissection of a brain (Figure 11.3).17 The posture of her upper body, too, is in imitation of Casserius.

Figure 11.2 The author portrait of Iulius Casserius, Penthaesteseion, hoc est de Quinque Sensibus Liber (Venice: Nicolaum Misserinum, 1609). Courtesy of the Countway Library for the History of Medicine, Harvard University.

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Figure 11.3 Anna Morandi, Self-portrait. Photograph. Courtesy of the Poggi Museum, Bologna, Italy. Such imagery reminded students of the need to acquire the skill and the discipline to study the body through dissection. A part of the flourishing anatomical culture of the period, these images joined a wide range of materials on human anatomy and dissection, including lavishly illustrated anatomical texts such as Andreas Vesalius’ De humani corporis fabrica (1543), as well as vernacular handbooks, short pamphlets and broadsides (fugitive sheets).18 This culture engaged anatomists, physicians and philosophers, as well as barbers, surgeons, artists, statesmen, illustrators and booksellers. For a broader audience, these images helped to convince a public that the anatomist’s labours were disconnected from acts of physical violence. Note the delicate rendering of Casserius’ hands and the dissected hand, and in Morandi’s figure, that of her hands and the careful dissection of the brain she is performing. In both, the anatomist is depicted with a part of the body, as if to suggest that the whole body or even the whole torso, as in Vesalius’ portrait, triggered a notion of anatomical violence. One of the more unusual features of this culture was the presence of a sceptical or critical commentary on anatomy. Though most of us would assume that advances in anatomical knowledge were followed by advances in medical knowledge, the texts of the period tell a more complicated story about the reception of anatomy. For instance, vernacular authors sometimes emphasised the brutality of the anatomist, the deforming or (literally) dehumanising quality of his touch. The surgeon, Leonardo Fioravanti

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(1517–88), published a number of works in which he voiced his criticism of learned medicine and the university professors who were its representatives and guardians. In his work on surgery (La Cirugia, 1570), he criticised the learned surgeon’s training in anatomy precisely because it predisposed the surgeon to treat the patient’s body as the anatomist treated the cadaver: But I myself always have seen that these surgeons, who are such good anatomists, when they treat patients, they wish always to make their anatomy with knives, cutting the poor bodies [of their patients] as if they were chops of a pig, they wish to scrape the bones for the fire.19 The passage collapses the distinction between surgeon and anatomist. It aligns the surgeon with the anatomist, the surgeon’s cuts with the anatomist’s cuts, which are closer to those of a butcher, and the patient’s body with a corpse. The passage evokes some of the familiar imagery around human dissection as a deforming process and an unnatural activity. But it also buries the distinction between the anatomist and the surgeon, between their manual skills – their touches are one and the same. Importantly, the negative portrayal of the anatomist’s and surgeon’s manual skill is organised around the knife and the cut rather than the (healing) hand. Anatomy had a reputation as an enterprise or a set of activities that were unnatural. In the late medieval period, cadavers for dissection were acquired through legal means usually involving all the authorities of the locale, including academic, civic and religious. However, the illicit acquisition of cadavers involved obtaining bodies not so much from graves, a practice that was severely punished, but rather from hospitals. As Katharine Park has explained, these were the bodies of people who had recently died but who lacked nearby kin or the means for a proper burial.20 In the sixteenth century, this practice continued. In Padua in 1578, two medical professors decided, as they were holding lessons in the hospital, to dissect the bodies of two women, who had recently died. The decision to open these cadavers was made in order ‘to demonstrate to the listeners the affected places and the kindler [or cause] of the diseases [fomites morborum]’.21 They wished to dissect the uterus in each cadaver, and in one the ‘fistula’ that resided beneath her breast.22 The examination, however, was then interrupted by the complaints of a little old woman (querelis anicularum), who feared at her own death a similar treatment, exposure, and delay of her burial. Although it is unclear whether these anatomies were finally conducted, the university threatened these professors with the loss of their salaries and reminded everyone of the statutes governing anatomy.23 These kinds of events, though infrequent, encouraged the negative association of anatomy and dissection with delayed and disrupted burial rituals. One hears the echoes of this unsavoury reputation in Fioravanti’s criticism of anatomy as ‘against the order of nature [contra l’ordine della natura]’. He explained, ‘wolves do not give such trouble [fastidio] to the bodies of other dead wolves, dogs, cats, birds, living fish, never harassing [molestando] the dead bodies of their own [della loro generatione].’24 Although the description is organised around animals, it focuses attention on the way that dissection would delay or alter burial and irritate or annoy

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(from molestare) the body, as it unmakes that body. Later in the text, Fioravanti leveraged this imagery, calling learned practitioners ‘destroyers of nature [distruggitori della natura]’. In these formulations, Fioravanti sought to highlight not only the unnatural character of dissection but also how poorly the skills of the anatomist translated to the skills of a learned surgeon. Portraying that skill negatively, Fioravanti turns not to the hands of the surgeon but to his knife. In the case of a wound caused by a knife or sword, Fioravanti explains: where the sword has made three bad cuts, the medical practitioner [medico] wants to make ten; I don’t know how this can be, I marvel at these practitioners [medici], who do this, and I do not know with what reason they can support it, nor with what experience they can prove it; but even more I wonder at those who are wounded, that they let themselves be so tortured without any probable reason.25 Fioravanti is sceptical of the rationale and the past experience that would support the medical practitioner’s decision to make additional cuts, when treating a wound. Without a rationale or past experiences, the cuts would appear, quite literally, as additional wounds. The passage also implies that it was commonplace for patients to assess or question a practitioner’s procedures. For these reason, Fioravanti wonders why patients submit their bodies to the surgeon’s knife.

A Gentle Touch To contrast the brutal touch of the anatomist or the torturing touch of these surgeons, practitioners developed a more nuanced, meaningful language for their touch. Descriptions of the light or gentle touch were part of the promotional efforts of these practitioners to operate successfully in an increasingly competitive medical marketplace.26 The good surgeon had a number of persistent traits, which derived from Celsus (c. 25 bce to c. 50 bce), who catalogued them: he should be youthful, have a strong and steady (never trembling) hand, be ambidextrous, have sharp and clear vision; and he should be filled with pity and thereby moved to cure patients but not moved by the patient’s cries (otherwise he may ‘go too fast, or cut less than is necessary’).27 Lightness was a quality attached to specific operations, such as cauterising the gums ‘lightly, without pressure’. This specific, technical use of lightness was complimented, increasingly in the sixteenth century, by a general description of the practitioner as ‘light-handed’. We see this most clearly in how surgeons and barbers discuss the procedures of bloodletting. As Nancy Siraisi has explained, bloodletting takes its place alongside other surgical treatments and procedures, a list that remained relatively constant in the literature from the Classical to the early modern period: Crisis intervention for injuries inflicted by external causes; treatment, often by externally applied medication, of chronic complications from such injuries, notably ulcers or fistulas arising from infected wounds; treatment by incision, excision, cautery, or medication of swellings and blemishes on the skin; and couching for cataracts.28

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For procedures related to bloodletting (with knife, cup or leech), as well as shaving and massaging, the Roman barber, Pietro Paolo Magni (b. 1525), stated in his Discorso (1584) that a good barber needed clear eyesight and a light touch: ‘But it does not persuade anyone of being able to exercise these arts well if he is not by nature given great vision and a gentle touch [della man leggiera].’29 Magni extended Celsus’ catalogue of traits to include the light touch. He proclaimed this, in addition to the technical uses of light touch that were related to specific procedures: for example, ‘rub-downs’ [fregagioni] required different kinds of touch, ‘gentle, deep and strong [leggiere, gravi, e forti]’.30 Though the adjective leggiero described a gentleness or lightness, here of the hand, and indicated skills in specific procedures or treatments, it was never fully divorced from broader concerns about comportment. From leggiero and leggiadro, the substantive leggiadria designated a subtle combination of grace and beauty, and it has been translated, depending on the context, as grace, gracefulness, elegance or gentleness. It had wide circulation in the sixteenth century in manuals on comportment and in treatises on aesthetics. In Castiglione’s The Courtier, a text that was enormously influential and devoted to the topic of comportment, the term describes the physical comportment of the body and the voice: there are those ‘who in appearance, in speech, in all of their movements, bring together gracefulness [leggiadria], all fine manners, all wisdom, all things combined and accumulated, just as one flower [may be] composed of all the excellent things of the world’.31 Related to grazia (grace) and sprezzatura (nonchalance), which Castiglione uses elsewhere in the text, leggiadria conveys a sense of elegance in appearance, speech and movement. As Fosca Mariani-Zini has explained, leggiadria expressed ‘an almost natural grace that was in no way divine but anchored in worldly reality, situated at the point of equilibrium in a tension between the natural and the artificial’.32 The flower, to use Castiglione’s simile, existed in nature but could be artificially perfected. With the Counter-Reformation, the discourses on manners and comportment began to emphasise constraint and discipline, and it may be that leggiadria inclined more to the artificial. But Magni’s conception of the ‘gentle’ touch was not emphatically artificial, for it was naturally given and (artfully) cultivated.33 The gentle touch or gentle hand could operate via synecdoche, as a part standing in for the elegance and grace of the whole, signifying the body and the moral character of the practitioner. However conventional and necessary it was to communicate their skills verbally to their patients and more permanently, in their books, early modern practitioners described the qualities of their touch to reassure patients not only of their skill but also of their good intentions: that is, their moral character. Accordingly, we should hear in Magni’s ‘gentle’ touch a comment about comportment that extends to the social identity of the practitioner. Magni was an ambitious barber, but a similar formation appears in the work of the learned surgeon, Giovanni Andrea della Croce (1515–75). In his Universal Surgery (1574), Croce described the work of the learned surgeon as activities performed with ‘order, art, prudence, and not without leggiadria’.34 In this list, leggiadria evoked the literature on comportment and conferred

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a sense of elegance to the practitioner, elegance identified with an elevated social status. But even here, questions of skill and character were integrated. Croce would have known that order, art and prudence called attention to the practical intellect, as Aristotle had described it, and by adding leggiadria to this list, he encouraged the association between it and elegance, enhancing the moral associations already in place with prudence.35 In these different vernacular texts, the vocabulary of touch underscores the connection between the skill of a practitioner and his moral character, a connection we begin to see with a synthetic approach to the issues around identity and status – for barbers, surgeons and physicians. That synthesis is necessary for understanding the problem, alluded to by Jonson, of trust in the relationship between patients and practitioners as it evolved in the medical marketplaces of the early modern period.

Error and Deception The representation of the practitioner’s touch as gentle had a counterpart in the contrasting images of brutal, erroneous and deceptive touches, suggesting also an expanding vocabulary of risk in the medical marketplace. Later in his Discorso, Magni criticised the skill of foreign barbers: ‘Yet have I observed that not in the province nor in any city in Italy or outside of Italy, barbers generally cut the vein on the transverse except Neapolitans, Calabrians, and Sicilians.’36 This error was well known, but the narrative serves to identify the boundary between local or familiar (Roman barbers) and foreign (southern ones). In this sense, it is conceptually similar to the opposition that Fioravanti created between himself and learned surgeons. In addition to erecting boundaries, the narratives of both Magni and Fioravanti focus on the lack of skill and erroneous cuts. This could be extended slightly to include a comment on moral character. Roman barbers are risk-averse, barbers from further south are risky: ‘from these men [signori fisici] are carried forth things that are dangerous and prohibited by learned physicians and surgeons [fisici anatomici e chirugici], both ancient and modern ones.’37 Unlike Fioravanti, Magni placed himself on the side of learning and drew attention to the dangerous and risky procedures of those ‘other’ barbers, foreign to Rome and outsiders to its learned medical community (in which Magni sought to place himself). Risk was no doubt always a part of medical procedures, even of bloodletting, where injured nerves resulted in paralysis (to say nothing of the potential for infection). Quite creatively, Magni chose to capitalise on risk, crafting what he called ‘good deception [buoni inganni]’. He intended these to display his ability to handle non-compliant patients. After all, he admitted, all the operations of the barber ‘are annoying and displeasing to the patients’.38 In the long chapter devoted to the barber’s handling of fearful patients, Magni recounts two anecdotes. The first concerned Pompeo da Zagarolo in the year 1566, when Magni had the patient’s father hold down his arm: ‘the boy [Pompeo] seeing the knife, screamed so much and his father, hearing him moan, let go of the arm, and I could not make the cut.’ The second case was very similar; it

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concerned leeches and a girl held down by a mother. Once the girl saw the small lance, she began to scream so much and the mother let go of her foot, and ‘I was not able to make [a go of] the leeches.’39 Here, touch and trust between patient and practitioner have failed to solidify. The sense of the passage is visual and auditory – the patient sees the lance and screams – and touch is limited to the touch of kin, not the practitioner. To overcome these obstacles, Magni did not recommend asking family members to hold down the body of the patient.40 Instead, he recommended removing the family members from the bloodletting experience (thereby distancing the touch of kin in order to initiate the touch of the practitioner). The vignettes that he uses to illustrate his ‘good deceptions’ are told, explicitly, for wimpy men (pusillanimi) and children, but the subject of the story, a man, had been to other barbers who, on two or three occasions, had tried to let his blood without success. The man was thus understandably reticent about undergoing additional procedures. To begin the story in this way is to insist on the patient’s ability to be reasonable and critical. The story is being told to ‘wimpy’ men but the subject of the story is not, himself, a wimp. Magni continued: ‘in a friendly way, say to him that you do not wish in any way to take up the knife but only to see the arm; tied with a rag and anointed with oil, where the vein was cut, his blood was supposed to come many times.’ To convince him further, Magni recommended telling him that ‘I do not have the soul to let blood from you’ and then ‘with a restful soul [animo riposato] . . . with a knife hidden in my sleeve of my left arm or in another place, I am able to make the operation with quickness [prestezza] and without him seeing it.’41 Here, in what was likely to be a familiar example of patient non-compliance in the early modern period, Magni transforms the nature of deception by making a virtue of his good intentions (and his quickness). His identity as a practitioner remains stable because the deception is guided by an already established sense of his good intentions. Moreover, much of the interaction proceeds in the absence of touch – Magni only looks at the patient’s arm and tries to convince him that he will not touch the arm – until one quick cut is made.

Conclusion The medical marketplace altered the relations between people, their ideas about medicine and health, and their beliefs about the body and its place in the world. In his Capricci medicinali (first published in 1561), Fioravanti wondered ‘how many men and women in this age have more faith in chit-chat [chiachiare] than in medicines?’42 Fioravanti was calling attention to the advice and good counsel routinely offered by physicians. In a marketplace that had eroded the theoretical underpinnings of learned medicine by the mid-sixteenth century, the advice of learned physicians became, in Fioravanti’s words, chit-chat. Counterpart erosions or transformations were evident for barbers and surgeons as well. Their descriptions of touch magnify a practitioner’s skill (which was often light and might also be quick), dramatise his comportment, and when positive, reflect (and

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instantiate) the trust between him and the patient. This brief foray into vernacular medical texts by barbers and surgeons has developed the crucial contrast between the work of the anatomist and the work of a medical practitioner, highlighting the pointed depiction of knives in the rhetorical elaboration of the anatomist’s violence and the surgeon’s error. Talk of touch became a way to talk about trust. This was, in part, because the vocabulary around touch was rich enough to coordinate skill and moral character, and that coordination is essential not only to how we view the nature of trust between a practitioner and patient but also to how it may have emerged in the first place. A synthetic approach to the skill set and identity of practitioners suggests the possibility of a more robust account of patient compliance in the early modern period. In the early modern period, in the context of bloodletting and barbering, compliance might be construed as a physical response – submitting one’s arm or leg to the knife – but it was a response conditioned, none the less, by cultural factors, such as whether your mother continued to hold your leg down even when you screamed at the sight of the knife or whether instead of kin, you were partnering with a cut-throat businessman (as Face was). Today, in the wake of the struggle for patients’ rights, the development of patientcentred healthcare, and the greater circulation of health information (often presumed to increase health literacy), the issue of patient compliance or adherence has emerged, in certain conditions and medical domains, as an intractable one. It is also a costly one. In a study from 1996, 58% of emergency room visits in the US were found to result from patient non-compliance or non-adherence.43 The World Health Organisation labelled poor adherence a ‘worldwide problem of striking magnitude’ (2003). According to the National Institutes of Health (NIH), ‘research over the last 40 years has documented universally poor adherence to prescription medications and behavioral treatments (e.g., diet change for hypertension, smoking cessation and screenings for cancer)’ (‘Adherence Network’). The NIH has formed a network with funding opportunities to study the behavioural, social, psychosocial and sociocultural factors of patient adherence that affect prevention and treatment of diseases and disorders, including cancers, heart, lung and blood conditions, alcoholism, diabetes and mental health. These opportunities reveal a set of interconnected goals within the medical community: to enhance medication adherence (can iPads or smartphones remind patients to take their medication?), to increase successful lifestyle interventions (smoking cessation, diet, exercise) related not only to the individual patient but also to a family, neighbourhood, workplace and community setting; and to make the relationship between the patient and the practitioner more effective (communication, health literacy, collaborative care). At first blush, these issues would seem to invite little historical reflection. After all, iPads are a relatively recent invention; so too is the emphasis placed on smoking cessation and weight loss. Compliance issues, however, are quite old, for they emerge in the long history of medicine in the context of both treatment and prevention. Indeed, Hippocratic texts discuss the problems that physicians had with patients who failed to

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adhere to recommended treatments or who, once they got a little better, stopped the treatments altogether.44 While there is much work to be done on why patients adhered or complied with the lifestyle remedies offered by physicians, empirics and (as the archives record) old women, this chapter has focused on barbers and surgeons, the vocabulary of touch and its cultural traction. Questions of skill and moral character responded implicitly to the development of anatomy and the practice of dissection; they were integrated in a practitioner’s touch and essential to establishing a trusting relationship with patients. The medical marketplace showcased this integration and transformed it. That transformation can be seen in the attending language of error and deception for medical practice, the erosion of trust and, perhaps, a more habitual practice of patient non-compliance.

Further Reading Andrea Carlino, Books of the Body: Anatomical Ritual and Renaissance Learning (Chicago: University of Chicago Press, 1999). Sandra Cavallo, Healthy Living in Late Renaissance Italy (Oxford: Oxford University Press, 2013). William Eamon, The Professor of Secrets: Mystery, Medicine, and Alchemy in Renaissance Italy (Washington, DC: National Geographic, 2010). David Gentilcore, Medical Charlatanism in Early Modern Italy (Oxford: Oxford University Press, 2006). Elizabeth D. Harvey (ed.), Sensible Flesh: On Touch in Early Modern Culture (Philadelphia: University of Pennsylvania Press, 2003). Pamela Long, Artisan/Practitioners and the Rise of the New Sciences, 1400-1600 (Oregon: Oregon State University Press, 2011). Katherine Park, Doctors and Medicine in Early Renaissance Florence (Princeton: Princeton University Press, 1985). Nancy Siraisi, Medieval and Early Renaissance Medicine: An Introduction to Knowledge and Practice (Chicago: University of Chicago Press, 1990).

Notes 1. Ben Jonson, Ben Jonson’s Plays and Masques, ed. Richard Harp (New York: W. W. Norton and Company, 2001), IV, vii, 128–35. 2. On barbers, see Sandra Cavallo, Artisans of the Body in Early Modern Italy: Identities, Families and Masculinities (Manchester: Manchester University Press, 2007); Deborah Harkness, The Jewel House: Elizabethan London and the Scientific Revolution (New Haven, CT: Yale University Press, 2007), pp. 57–96; Margaret Pelling, Medical Conflicts in Early Modern London: Patronage, Physicians, and Irregular Practitioners, 1550–1640 (Oxford: Clarendon Press, 2003), esp. pp. 136–88, and The Common Lot: Sickness, Medical Occupations, and the Urban Poor in Early Modern England (London and New York: Longman, 1998); and with Charles Webster, ‘Medical Practitioners’, in Health, Medicine, and Mortality in the Sixteenth Century (Cambridge: Cambridge University Press, 1979), pp. 165–236.

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3. The term comes from J. L. Austin, How To Do Things With Words (Oxford: Clarendon Press, 1962), which was based on his lecture, delivered at Harvard University in 1955. 4. In general, The Cultural History of the Senses (London: Bloomsbury, 2014); Constance Classen and David Howes, Ways of Sensing: Understanding the Senses in Society (London and New York: Routledge, 2013); Constance Classen, Worlds of Sense: Exploring the Senses in History and across Cultures (London and New York: Routledge, 1993) and The Deepest Sense: A Cultural History of Touch (Urbana: University of Illinois Press, 2012). For touch in relation to eloquence, see Carla Mazzio, The Inarticulate Renaissance: Language Trouble in an Age of Eloquence (Chicago: University of Chicago Press, 2009), pp. 175–214. 5. Elizabeth D. Harvey (ed.), Sensible Flesh: On Touch in Early Modern Culture (Philadelphia: University of Pennsylvania Press, 2003), p. 2. 6. For a rhetorical approach, see Eve Keller, Generating Bodies and Gendered Selves: The Rhetoric of Reproduction in Early Modern England (Washington, DC: University of Washington Press, 2007). For an approach based on pictorial evidence, see Lianne McTavish, Childbirth and the Display of Authority in Early Modern France (Vermont: Ashgate, 2005). For a historical–contextual approach, see Adrian Wilson, The Making of Man-Midwifery: Childbirth in England, 1660–1770 (Cambridge, MA: Harvard University Press, 1995). 7. Martin Jay, Downcast Eyes: The Denigration of Vision in Twentieth-Century French Thought (Berkeley: University of California Press, 1993); and Jonathan Crary, Techniques of the Observer: On Vision and Modernity in the Nineteenth Century (Cambridge, MA: MIT Press, 1990). 8. For a discussion of voice and its role in sensory apprehension, see Jennifer Richards and Richard Wistreich, ‘The Anatomy of the Renaissance Voice’, in this volume, pp. 276–93. 9. Several studies have emphasised the role of artisans in the Scientific Revolution. See Pamela H. Smith, The Body of the Artisan: Art and Experience in the Scientific Revolution (Chicago: University of Chicago Press, 2004); Pamela O. Long, Artisan/Practitioners and the Rise of the New Sciences, 1400–1600 (Corvallis: Oregon State University Press, 2011), esp. pp. 10-29. For artisanal aspects of medical practitioners, see Sandra Cavallo, Artisans of the Body in Early Modern Italy: Identities, Families, and Masculinities (Manchester: Manchester University Press, 2007); and Steven Shapin and Christopher Lawrence (eds), Science Incarnate: Historical Embodiments of Natural Knowledge (Chicago: University of Chicago Press, 1998). For connections between science and capitalism, see Joanna Picciotto, Labors of Innocence in Early Modern England (Cambridge, MA: Harvard University Press, 2010). 10. In addition to Pamela Long’s work (n. 9), see Peter Galison, ‘Trading with the Enemy’, in Michael Gorman (ed.), Trading Zones and Interactional Expertise (Boston: MIT Press, 2010), pp. 25–52. 11. Michael Stolberg, ‘Bedside Teaching and the Acquisition of Practical Skills in MidSixteenth-Century Padua’, Journal of the History of Medicine and Allied Sciences 69 (2014), pp. 633–61. 12. On this marketplace, see Sandra Cavallo, Healthy Living in Late Renaissance Italy (Oxford: Oxford University Press, 2013); the work of Patrick Wallis, especially ‘Consumption, Retailing, and Medicine in Early-Modern London’, Economic History Review, new series, 61 (2008), pp. 26–53; David Gentilcore, Medical Charlatanism in Early Modern Italy (Oxford: Oxford University Press, 2006); and Gentilcore, ‘The Organisation of Medical Practice in Malpighi’s Italy’, in Domenico Bertoloni Meli (ed.), Marcello Malpighi: Anatomist and Physician (Florence: Olschki, 1997), pp. 75–110.

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13. This is partly due to the focused attention that scholars have paid to the learned (Latinate) traditions of medicine, both the evolution of its texts and of its learned communities. 14. For approaches to trust, see Steven Shapin, A Social History of Truth: Civility and Science in Seventeenth-Century England (Chicago: University of Chicago Press, 1995); Shapin, ‘Trust, Honesty, and the Authority of Science’, in Ruth Ellen Bulger, Elizabeth Meyer Bobby and Harvey V. Fineberg (eds), Society’s Choices: Social and Ethical Decision Making in Biomedicine (Washington, DC: National Academy Press, 1995), pp. 388–408; Shapin, ‘Scholar, Physician, Gentleman’, in Lorraine Daston and Katharine Park (eds), Cambridge History of Science: Early Modern (Cambridge: Cambridge University Press, 2003); and Adrian Johns, ‘Identity, Practice, and Trust in Early Modern Natural Philosophy’, Historical Journal 42 (1999), pp. 1125–45. 15. Gianna Pomata has analysed legal cases in which patients sued practitioners for failing to uphold their contracts for cure and demonstrated that the practitioner–patient relationship in early modern Italy was characterised by equality until the eighteenth century. See Pomata, Contracting a Cure: Patients, Healers, and the Law in Early Modern Bologna (Baltimore: The Johns Hopkins University Press, 1998). 16. Elisabetta Cunsolo, ‘Giulio Casserio e la publicazione del De vocis auditusque organis tra Padova e Ferrara all’inizio del ’600’, MEFRIM 120.2 (2008), pp. 385–405, esp. pp. 391–3. 17. See Rebecca Messbarger, ‘Re-Casting’ and ‘The Lady Anatomist’, in The Lady Anatomist (Chicago: University of Chicago Press, 2010), pp. 73–98, 99–118; Messbarger, ‘Anna Morandi’s Self-Portrayal in Wax with Brain’, in Stanley Finger, Dahlia Zaidel, François Boller, Julien Bogousslavsky (eds), The Fine Arts, Neurology, and Neuroscience: History and Modern Perspectives (Progress in Brain Research series) (Oxford: Elsevier, 2014); and Messbarger, ‘Re-membering a Body of Work: Anatomist and Anatomical Designer Anna Morandi Manzolini’, Studies in Eighteenth-Century Culture 32 (2003), pp. 123–54. 18. Jonathan Sawday, The Body Emblazoned: Dissection and the Human Body in Renaissance Culture (London and New York: Routledge, 1995); Andrea Carlino, Books of the Body: Anatomical Ritual and Renaissance Learning (Chicago: University of Chicago Press, 1999) and Paper Bodies: A Catalogue of Anatomical Fugitive Sheets, 1538–1687 (London: Wellcome Institute for the History of Medicine, 1999). 19. Leonardo Fioravanti, La Cirugia (Venice: Gli Heredi di Melchior Sessa, 1570), pp. 49–50. These are my translations, unless otherwise noted. On Fioravanti, see William Eamon, The Professor of Secrets: Mystery, Medicine, and Alchemy in Renaissance Italy (Washington, DC: National Geographic, 2010); and Piero Camporesi, Camminare il mondo: vita e avventure di Leonardo Fioravanti medico del cinquecento (Milan: Garzanti, 1997). 20. On the licit means of acquiring cadavers, see Carlino, Books of the Body, pp. 77–91. On the illicit means by which cadavers were obtained, see Katharine Park, ‘The Criminal and the Saintly Body: Autopsy and Dissection in Late Medieval Europe’, Renaissance Quarterly 47 (1994), pp. 1–33; and on the relationship between dissection and disrupted burial, see Park, ‘The Life of the Corpse: Division and Dissection in Late Medieval Europe’, Journal of the History of Medicine and Allied Sciences 50 (1995), pp. 111–32. 21. This case is discussed more fully in Cynthia Klestinec, Theaters of Anatomy: Students, Teachers, and Traditions of Dissection in Renaissance Venice (Baltimore: The Johns Hopkins University Press, 2011). See Antonio Favaro (ed.), Atti della nazione germanica artista [Acta germanicae artistarum], 2 vols (Padua: Typografia Emiliana, [1578] 1911–1912), vol. 1, pp. 143–4. 22. Atti, vol. 1, pp. 143–4. 23. Atti, vol. 1, pp. 145–6.

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224 24. 25. 26. 27. 28. 29.

30. 31. 32.

33. 34. 35.

36. 37. 38. 39. 40. 41. 42. 43.

44.

cynthia klestinec Ibid., p. 215. Fioravanti, La Cirugia, p. 20. On this marketplace, see n. 12. Celsus, De Medicina, Book 7, proem. Nancy Siraisi, Medieval and Early Renaissance Medicine: An Introduction to Knowledge and Practice (Chicago: University of Chicago Press, 1990), p. 154. Pietro Paolo Magni, Discorsi di Pietro Paolo Magni Piacentino intorno al sanguinar i corpi humani, il modo di ataccare le sanguisuche e ventose è far frittioni è vesicatorii (1584): Ma non si persuada alcuno di poter essercitar questi arte bene se non è dalla natura dotato di buonissima vista, e della man leggiera (Rome: Bartholomeo Bonfadine et Tito Diani, 1584). The manual contains a technical text and eleven engraved pictures that show the barber, presumably Magni, often with his assistants, performing different procedures on the bodies of male and female patients. On Magni’s images, see Evelyn Lincoln, ‘Curating the Renaissance Body’, in Word and Image 17.1–2 (2001), pp. 42–61. Magni, Discorsi, p. 65. Baldassar Castiglione, Il Cortegiano (Florence: Per li heredi di Philippo di Giunta, 1528), book 3, p. 155. Barbara Cassin, Emily Apter, Jacques Lezra and Michael Wood (eds), Dictionary of Untranslatables: A Philosophical Lexicon (Princeton: Princeton University Press, 2014), pp. 559–60. This text was first published in French as Vocabulaire européen des philosophies: Dictionnaire des intraduisibles (Paris: Editions du Seuil, 2004). Magni, in his Discorso, noted that the barber was supposed to wear clean clothes and never use dirty words (sporche parole), suggesting practical ways to realise the ideal of leggiadria. Giovanni Andrea della Croce, Cirugia universale e perfetta di tutte le parti pertinenti all’ottimo chirurgo (Venice: Giordano Ziletti, 1574). Less frequently it seems to be used to celebrate a notion of excess, going beyond measure and harmony, as dictated by the rules of nature. See Fosca Mariani-Zini, in Cassin et al., Dictionary of Untranslatables, pp. 559–60. Magni, Discorso, p. 7. Ibid. Ibid. Ibid., p. 10. Ibid. Ibid. Leonardo Fioravanti, Capricci medicinali (Venice: Lodovico Avanzo, 1561). Cited in Donna Falvo, Effective Patient Education: A Guide to Increased Adherence, 4th edn (Woods Hole, MA: Jones & Bartlett Publishers, 2011), p. 3. This study was C. E. Dennehy, D. T. Kishi and C. Louie, ‘Drug related illness in emergency department patients’, American Journal of Health System Pharmacy 53.12 (1996), pp. 1422–6. Jacques Joanna, Hippocrate (Baltimore: The Johns Hopkins University Press, 1999).

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12 REFRAMING FATNESS: CRITIQUING ‘OBESITY’ Bethan Evans and Charlotte Cooper

Introduction ver the last twenty years or so, fatness,1 pathologised as overweight and obesity, has been a core public health concern around which has grown a lucrative international weight loss industry. Referred to as a ‘time bomb’ and ‘the terror within’, analogies of ‘war’ circulate around obesity, framing fatness as enemy.2 Religious imagery and cultural and moral ideologies inform medical, popular and policy language with the ‘sins’ of ‘gluttony’ and ‘sloth’, evoked to frame fat people as immoral at worst and unknowledgeable victims at best,3 and understandings of fatness intersect with gender, class, age, sexuality, disability and race to make some fat bodies more problematically fat than others. As Evans and Colls4 argue, drawing on Michel Foucault,5 a combination of medical and moral knowledges produces the powerful ‘obesity truths’ through which fatness is framed as universally abject and pathological. Dominant and medicalised discourses of fatness (as obesity) leave little room for alternative understandings. Yet, informed by a long history of feminist and queer fat activism, there are other, non-medicalised accounts of fatness that offer alternatives to, and/or directly challenge, the ‘truths’ on which obesity discourse is based.6 These critical accounts can be drawn together under the umbrella ‘Fat Studies’,7 an interdisciplinary field spanning the humanities and social sciences, including the nutritional sciences via the Health at Every Size (HAES)8 movement. Fat studies as a research field intersects with fat activism, which has a longer history, often involving art and performance practices to disrupt dominant understandings of fatness and/or create spaces for, and encounters with, fat bodies outside of any pathological framing. Work within fat studies and fat activism intersects with the core interests of the medical humanities in multiple ways and yet there has been surprisingly little engagement between them. In fact, as Atkinson et al. argue, the medical humanities ‘have . . . accorded negligible attention to the art, arguments and activities of activist movements’ more broadly.9 A critical medical humanities provides impetus for such engagement. In this chapter, we outline this potential in relation to fat studies and fat activism. In so doing, we are not suggesting the critical medical humanities can provide the means to ‘tackle obesity’ better; rather, we suggest that engaging these

O

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movements can foreground alternative understandings of fatness beyond pathology and promote more socially just engagements between medicine and fat bodies. In this chapter we firstly give some background on fat studies and fat activism before, secondly, signposting examples of fat studies scholarship that have synergies with the critical medical humanities. Thirdly, we draw on insights from queer and disability theory and the research justice movement to indicate ways in which the critical medical humanities may develop socially just engagements with fatness. These insights are illustrated through Charlotte’s own involvement in art and performance-based activist events.

Background: Fat Studies and Fat Activism Fat studies is an interdisciplinary and academic field that developed out of a series of gatherings and publications (including a dedicated journal10 and two readers11) in the West within the past ten years,12 particularly following the 2000 World Health Organisation report on obesity.13 The rhetoric of obesity epidemiology since 2000 has framed fatness as a crisis and implicated it within a post-millennial neoliberal politics of austerity. However, this period also witnessed a coming of age for critical14 communities, and within fat studies ‘obesity’ is not framed as a ‘natural medical fact’ without the use of scare quotes, and significantly for this volume on critical medical humanities, being critical is central to fat studies. As Cooper has explained elsewhere: Fat Studies is different to dominant obesity discourse in that it is critical; it seeks to expand the understanding of fatness beyond the narrow confines of medicalisation or pathology, which is why the term ‘obese’ is frequently censured; it often incorporates a social model which shifts the focus of interrogation away from the fat body itself and more towards positioning and contingent systems and structures; and it provides a platform for identifying, building and developing fat culture as well as extending alliances between activism and the academy.15 Critical scholarship concerning fat pre-dates fat studies, as do fat activism and critical health promotion in relation to fat people. Fat activism has strong historical and cultural roots in a fat feminism underpinned by queer identity and community. The Fat Underground, one of the earliest groups to develop a theory and practice of fat activism, counted many lesbian and bisexual feminists within its sprawling membership.16 As queer developed and began to be theorised as something connected to and distinct from an expression of sexuality, third-wave fat activists, such as the collective who produced FaT GiRL zine, amplified and solidified queer fat feminist aesthetic praxis.17 Today, fat and queer are profoundly linked, through organisations such as NOLOSE, in academia, popular culture and fat activism more generally.18 Being critical in the context of fat studies means being critical of the dominant ways in which fatness is framed as pathology and engaging with other critical movements and theory, including feminist, queer and poststructural theory. Much work in fat studies stands in contradistinction to dominant modes of knowledge production,

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particularly in the medical sciences, in its style and its approaches to fat. Work is often written in the first person, avoids the quantification of bodies and any simple classification of bodies as fat (or not) on this basis, and entails reflexive, situated research that acknowledges the role of the researcher’s body in the production of knowledge and the partiality of perspectives produced. This is important because, as Wann explains: If you do fat studies work, you yourself are always already part of the topic. Every person who lives in a fat-hating culture inevitably absorbs anti-fat beliefs, assumptions, and stereotypes, and also inevitably comes to occupy a position in relation to power arrangements that are based on weight.19 Being critical is not therefore a simple ‘paint by numbers’ approach to revealing an oppression; rather it entails interrogating the intersecting power relations through which knowledge claims are made about fatness.20 In contrast, in mainstream, medicalised obesity discourse, fat people are almost always absent as active participants and owners of knowledge, even though we are ostensibly at its heart. Fat studies therefore provides a platform where critical perspectives could, theoretically, converge, irrespective of grassroots or professional allegiances. Yet there are tensions and it is important here that we acknowledge these to avoid presenting fat studies as a uniform and unified field. Firstly, fat studies is predominantly Anglo-American. It is dominated by research and activism in the US;21 there is an increasing body of work from the UK but a significant absence of work from the Majority World. As Cooper has argued, whilst this is understandable to some extent (the ‘fat American’ stereotype; longer fat activist archives in the US), the specificities of politics and healthcare in different national contexts mean that fat stigma and prejudice take different forms in different places. For example, the relationship between fat, class and neoliberal models of responsibility play out differently in the context of a privately funded healthcare system (US) and a publicly funded National Health Service (UK). It is therefore important that geographically heterogenous understandings of fat are developed to avoid the risks of cultural imperialism.22 Secondly, as with any interdisciplinary field, the breadth of methodological and epistemological approaches means there are internal tensions, particularly regarding the relationship to the more clinically oriented HAES movement. There are also tensions, as Cooper explains, ‘between researchers who are somewhat removed from the day-to-day experience of being fat and those who have a closer relationship to it’23 and between those who are supportive or not of fat liberation. Some authors (for example, Probyn24), whilst rooted in feminist work, continue to accept the core tenets of dominant obesity discourse.25 Drawing simple lines around what is, or is not, fat studies is therefore impossible. Thirdly, there are tensions surrounding the relationship between activism and the academy. With its emphasis on measurable impact, the neoliberal academy too often gives rise to a form of individualist career-building scholarship where there is little space for activism or genuine community involvement.26 As a result, in some areas

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of academic work, we are seeing the concepts that we, as activists, originated being whitewashed and appropriated in spaces that are part of a fat studies genealogy but removed from the everyday realities of living as a fat person. For example, over the past couple of years there have been critical institutional gatherings of academics and health professionals where fat people/activists are absent or treated as an unwelcome presence, or where obesity discourse is present.27 This colonisation of fat experience, particularly around ameliorating ‘harsh’ activist language, could be seen as an inevitable consequence of fat studies’ relevance, popularity and development as an academic field. However, losing direct activist input risks also losing relevancy and power through losing track of the roots of fat studies within fat activism. This connection to activism is germane to a discussion of critical medical humanities, as well as the themes of this chapter. Whilst the medical humanities does not have its roots in activism, it is similarly an interdisciplinary field with an interest in engaging non-academics in research. Whilst a critical medical humanities could usefully engage with activism and activists, it is important to avoid a situation where a project’s subjects are treated as walk-on bit-players instead of as equals and collaborators, compared to the ‘real’ work undertaken by project managers. Recognising these tensions, and in the spirit of feminist scholarship,28 we first contend that one element in the development of a critical medical humanities must be greater transparency and reflection on the modes of knowledge production within the field itself. This requires acknowledging the forms of privilege and the positions from which we write.29 Thus, we first situate the knowledge that we produce here within our own lived and embodied biographies: Charlotte Cooper: I am a middle-aged, working-class queer from East London. I tend to orientate myself around punk, feminism and postmodernism. I am fat. My contributions to fat activism over nearly 30 years have included publications, event organising, public life, academic work and thousands of complicated conversations and ideas. My fat politics bleed into other forms of activism, as well as into my cultural work. I make zines (small, homemade publications), films, performance and digital artefacts, amongst other cultural objects and moments. I currently make my living as a psychotherapist and have my own practice. I am not someone who can be easily placed into the discrete categories – academic, service user, health professional, artist – that seem to emerge through medical humanities. As a somewhat unruly presence I destabilise some of the taken-forgranted positioning of the field, which I relish and regard as an important part of what I bring to this edited collection. Bethan Evans: I am a white, middle-class academic geographer (whose work is interdisciplinary), scholar-activist and fat body. I have written elsewhere about some of the challenges I face negotiating these multiple positions whilst undertaking research.30 I am fat, though my body size has changed over the course of my life, sometimes being thin, sometimes fat. At the size I am now, I have had uncomfortable encounters with clinical professionals but I am not disabled by the built environment and have not

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suffered abuse in public places. In contrast to the dominant ways in which ‘impact’ and ‘knowledge exchange’ are framed in academia, I do not see knowledge moving from academia to activism; rather my academic work is informed by engagement with activists and my aim is for activist understandings of fatness to disrupt and inform academic approaches. Working with scholar-activists like Charlotte is one way in which I aim to do this. My position as a middle-class, white academic places me in a privileged position in writing this chapter and, in doing so, I acknowledge that the account we produce here is necessarily partial.

Fat Studies and Medical Humanities In this section we draw on the three Es, which Whitehead and Woods use to frame the critical medical humanities31 in order to outline the potential for engagement with fat studies:

Ethics According to Downie and MacNaughton, a critical perspective is essential to understanding the role of the medical humanities (and, more specifically, philosophy within medical humanities) in relation to bioethics.32 In particular, the humanities draw direct attention to the assumptions that underpin medical knowledges and practices. This, in combination with more expansive questions in bioethics, has led to a concern in the medical humanities with the attitudes and perceptions that inform medical knowledge production, interventions and clinical encounters. Within fat activism and fat studies, these questions of ethics are mirrored in work that questions taken-for-granted assumptions about fatness in the production of medical knowledge and the ethics of health interventions. Solovay argues that: There are three fundamental beliefs about fat held by the medical establishment all of which have profound implications not only for the health and well-being of fat people, but also for the law. These rarely challenged assumptions are: that weight is mutable, that weight loss is a benign procedure and that fat is unhealthy. Medicine’s failure to examine these basic assumptions critically has resulted in the development of a field riddled by bias.33 These assumptions are so powerful that they can override important ethical questions about the potential harm of interventions aiming to reduce weight. For example, Evans and Colls question the ethics of a body mass index (BMI) measurement programme, which went ahead despite evaluation by the National Screening Committee that it was unable to ‘do more good than harm’.34 Fat studies and HAES scholarship challenges these assumptions, demonstrating that there is no simple relationship between weight and health, that weight loss is not benign and in fact may be worse for health than remaining at a consistently higher weight, and that weight loss is not sustainable.35 Fat studies also challenges claims to ‘objectivity’ in the production of knowledge on

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fat. In the medical humanities, one of the few papers written directly on fat addresses the combination of medical and cultural knowledges about fat through analysis of the discursive constructions of obesity in an episode of the US TV show about a plastic surgery clinic, Nip/Tuck. Classed stereotypes about fat as a result of laziness are addressed here, as is the objectification of fat bodies within clinical examinations and the disciplinary role of medicine in relation to fat. Within fat studies there are many analyses of the ways in which fat is represented across a range of media. These include analyses of cultural discourses in public health policy36 and The Fat Studies Reader has a whole section on size-ism in popular culture and literature.37 This discourse matters for medical ethics because it contributes to a situation in which the dominant understanding of fat bodies is abject, irresponsible and stigmatised, and this, in turn, has an impact on the health of fat bodies. Within fat activist communities, bad experiences of medical care, in which the patient’s fatness obscures the purpose of the consultation and/or leads to a dehumanising encounter with medical professionals, are common – and, in fact, both of us have experienced this first-hand. Ernsberger reviews previous studies on social class, weight and health, demonstrating that social stigma, stress and prejudicial medical care are important factors in this relationship.38 In particular, he cites work that demonstrates how doctors are less likely to perform screening and preventative health checks on fat patients and how fat people are less likely to seek medical care because of bad experiences with medical professionals. Bovey reports that ‘Llewellyn Louderback remarked that advising a fat person to see his [sic] physician is like telling a mouse to go see a cat,’39 and cites numerous examples from a survey of two hundred fat women, who report shocking experiences of hatred encountered from medical professionals. Similar attitudes are perhaps evident within Medical Humanities research by Weisberg and Duffin, in which an interdisciplinary class of medical, nursing and law students read ‘Fat Lady’ by Irvin Yalom to discuss ‘treating patients/clients one hates’.40

Education Bovey, in discussing the prejudice faced by fat people in encounters with medical professionals, suggests that the dislike that doctors have for fat patients ‘comes from their middle-class values rather than from their training or from any scientific basis’.41 Writing more recently, Boero argues that ‘pre-existing, yet largely unexamined cultural understandings of fatness form the plinth of representations of scientific debate or agreement about weight.’42 Thus, considering the role of medical education in the production of fat stigma requires attending to the ways in which ‘common-sense’ knowledges intersect with simplistic ‘scientific’ understandings to produce fat as abject. Given that the dominant medico-scientific approach to fat is one of pathology, it is interesting to consider whether it would be possible to deliver a critical medical humanities approach in alignment with fat studies within medical education, which otherwise presents fat as undesirable. Within fat studies research, two key issues relating to education are evident. Firstly, a focus on fat inevitably draws attention to the

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bodies present within the classroom. Both Guthman43 and Escalera44 identify potential problems faced by fat teachers in delivering critical courses in which their bodies may become a factor in evaluation of the content of the course. Watkins et al. also suggest that fat studies classes require students to think about their own bodies and the ways in which they evaluate their own self-worth.45 This has the potential to challenge students’ negative perceptions of fat, but also, as Guthman documents, discomfits some students by challenging the frameworks within which they understand themselves to be a ‘good’ subject.46 Secondly, Koppelman, following a review of courses that teach fat literature, concludes that the stories used present a limited interpretation of fat experience. She suggests that such courses need to engage with stories told from the perspective of fat activists in order to develop alternative understandings of fatness beyond the dominant approach.47 Such activist literatures would be essential for the incorporation of critical approaches to fat within medical humanities education.

Experience As we were researching this chapter, we both read Heidi Lyth’s account of a fat woman in her care (2003),48 and Brian Briggs’s poem, ‘Elizabeth’ (2013).49 Though published ten years apart, these strike us as examples of one common form of work within the medical humanities, in which health professionals use imaginative prose and poetry to explore their roles as nurse and doctor. As fat studies scholars, we were both struck by the authors’ use of abjection in their depictions of anonymous fat women. Briggs’s is: ‘Not attractive. Fat. Lardy even,’ and Lyth’s fills the bed from which she ‘waddles’ to the toilet and back. The language used here reveals a tendency to dehumanise the fat patient, reducing them to matter (fat, lard) and commenting in negative terms on their attractiveness and the way they move. As a psychotherapist, Charlotte is drawn to the writers’ lack of empathy for their fat subjects in accounts that, presumably, are offered as examples of understanding gendered fat subjectivities. But these stories make us, as fat activists, groan and roll our eyes; they present fatphobia dressed up as progressive and humanising narratives through the humanities. They drip with condescension and unquestioned prejudice projected on to the nameless and voiceless fat women central to the pieces. These stand in contrast to the ways in which narrative, autoethnography and creative forms of representation have been used in fat studies that foreground the experience of fat people themselves rather than health professionals. For example, Jason Elvis Baker’s cartoon, ‘Transfatty’, explores gendered embodiment from a trans perspective; and Kim Taylor’s image, ‘Drowned and Deserted’, inspired by the poem ‘Learning to Breathe’, explores the experience of breathlessness and ‘drowning on dry land’ that comes from encountering the obvious discomfort that the artist’s difference invokes in others.50 Elsewhere, Cooper and Murray explore their experiences of fat activism through a conversation piece;51 Longhurst uses autoethnography to document her experiences of weight loss;52 White uses autoethnography to explore flatchestedness in the context of fat/trans embodied experiences;53 and Samantha Murray discusses the tension in coming out as fat and accepting her body in the context of

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dominant fatphobia54 using her own experiences of gastric band surgery to explore the construction of fat as deviant and pathological, and raising important questions that contrast with the increasing presentation of obesity surgery as a ‘quick-fix’ solution to the so-called ‘obesity epidemic’.55 There are also multiple examples of work within fat studies that engages with literary and other creative accounts of fatness – see, for example, Huff, who presents a reading of two poems in order to ‘fatten’ literary history,56 and Shaw, who considers fatness in relation to Jamaican dancehall music.57

Queer and Disability Theory We now present some suggestions of how medical humanities might develop a more critical approach to fat. The examples from medical humanities research that we discussed above – notably Lyth’s account of a fat woman in her care, and Briggs’s poem, ‘Elizabeth’ – demonstrate that simply making art out of experience is inadequate; practitioners and cultural workers must also engage with marginal perspectives and activist praxis if they are to develop socially conscious work. As we mentioned in the introduction, fat studies currently presents tensions around professionalisation and grassroots experience. Even within this critical field, it is common to find work ‘about’ or ‘for’ (rather than ‘by’) fat people. But it is our belief that medical humanities should also strive to develop an integrated discourse and that, ideally, work should be ‘with’ and ‘by’ user groups and lay people. This entails developing a critical approach to power that recognises and honours activist histories and contributions without professionalising them out of existence, or colonising or gentrifying them. In the remainder of this chapter, we draw on three influences to suggest conceptual and epistemological routes to doing this: Queer Theory, Disability Theory and Research Justice. There has been some engagement with Queer Theory within the medical humanities recently, through work exploring the experiences of Lesbian, Gay, Bisexual, Transgender, Queer (LGBTQ) patients,58 and which uses Queer Theory to ‘queer’ normative clinical ideals.59 Here, we are interested in queering medical humanities in order to facilitate a progressive approach to fat within the field. Common definitions of queer include concepts such as odd, unconventional, deviant, disruptive and sickly. Queering comes from a body of work known as Queer Theory, which has roots in postmodernism, poststructuralism, feminism, civil rights movements and psychoanalysis. Queer Theory is largely associated with sexual identity, particularly a broad range of nonnormative sexualities and non-binary expressions of gender, and is frequently mistaken as a synonym for (male) homosexual. Here, we use queer to mean all of these things, and join Noreen Giffney in noting the benefits of the term’s slipperiness: There is an unremitting emphasis in queer theoretical work on fluidity, über-inclusivity, indeterminacy, indefinibility, unknowability, the preposterous, impossibility, unthinkability, unintelligibility, meaninglessness and that which is unrepresentable and uncommunicable.60 Queer supports disruptive, fragmented and marginal subjectivities, and, given its foundation in postmodernism, refuses authoritarian universal narratives.61 This makes

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space for multiple perspectives and intersections rather than seeking one universal understanding of fat. Queer formulates the subaltern’s voice as one that disrupts dominant discourse. ‘Queers Read This’, a pamphlet circulated at a Pride march in New York in 1990, is one of the earliest invocations of queer, and is loaded with rage and hatred of authority; it positions queers as a threat to the social order.62 Queering also means applying a particular lens towards a subject, and here we particularly evoke Sara Ahmed’s figure of the killjoy, a queered, racialised, gendered subject, a critic who pipes up and disrupts from the margins, a figure who understands that the mainstream is overrated.63 The figure of the killjoy provides a counter to any attempt to reduce fat activism to celebration, as nothing more consequential than a moment of fun compared to the real work of tackling the global ‘obesity’ epidemic. This minimises the work that takes place when marginal populations claim ownership of knowledge; it is, as film curator and activist Derica Shields explains, akin to a liberal ‘pat on the head’.64 In contrast, the racialised, gendered and queered subject of the killjoy forces recognition that the struggle for self-actualisation and social transformation involves: causing unhappiness even if that is not the point of our action. So much happiness is premised on, and promised by, the concealment of suffering, the freedom to look away from what compromises one’s happiness. To revolt can hurt not only because you are proximate to hurt but also because you cause unhappiness by revealing the causes of unhappiness.65 These processes are revealing; they expose those whose happiness is established on others’ oppression, silence and complicity. Thus, queering the medical humanities requires being a killjoy, questioning the perspectives that are privileged within the field and in ways that may be uncomfortable and disruptive. It may also open up the field to engagements with forms of creative practice that are deliberately disruptive. For example, Charlotte is a founding member of Homosexual Death Drive, a fat queercore (queer and punk) art band. She uses the band to develop a queer antisocial sensibility with the aim of disrupting audience expectations and expanding possibilities for fat, middle-aged women like herself, and anybody else who is interested. Audiences typically expect Homosexual Death Drive to be funny, cosy comediennes, like Dawn French or Victoria Wood. There is humour, but we are threatening presences too; our songs are obnoxious and our behaviour is challenging. It is common for people to walk out of our shows in disgust, and we wave them away and give them the finger. Homosexual Death Drive is not a medical humanities project, but it is a concrete example of how queer might expand a critical medical humanities approach to fat. In Homosexual Death Drive, ‘the obese’ are vivid creators, owners and operators of knowledge about fat, gendered and queered bodies.66 Our fatness in the band is intersectional: we are more than one-note beings and we use our embodiment ambiguously, through the delightful pain of the queer antisocial, and expertly, such that anyone can participate. Through performing, we have discovered new knowledge that could never arise from the practices in a clinic, or from the restricted poetry and prose quoted earlier, both of which are premised on the medicalised abjectification of fat people.

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The social model of disability offers a means of understanding fat people in relation to marginalisation, medicalisation and social transformation. This model was promoted in the UK in the 1990s by a movement of disabled scholars and activists67 with great success and is now the dominant approach in practice and research, including the medical humanities. The movement initially used a Marxist framework to historicise disability and problematise medicalisation, advocating a distinction between impairment as physical difference and disability as social construction. This distinction is a powerful one that has been important for disabled people’s rights by emphasising the need for social transformation through, for example, building policies for equal access and anti-discrimination policies rather than medical interventions designed to normalise their bodies. Garden has suggested that the social model of disability may provide a way for the medical humanities to engage more fully with the social context and social determinants of disability.68 Couser has similarly proposed that Disability Studies has much to offer medical humanities in relation to medical education through providing a means to recognise the harms that medical treatment has caused people with disabilities, as well as its benefits.69 Here, we suggest that the social model of disability has the potential to support a critical medical humanities approach to fat, particularly through de-centring medicalised definitions and practitioner perspectives. Dominant obesity discourse positions the health practitioner, as well as lay practitioners such as leaders of commercial weight loss groups or personal trainers, as benevolent and concerned helpers. As discussed above, this contrasts greatly with fat people’s own accounts of clinical and para-clinical encounters, which are loaded with prejudice, callousness, obstructiveness and negative feeling.70 The social model of disability offers a useful critique of the clinical encounter that is congruent with fat people’s narratives. Here, the interaction between health professional and disabled and/ or fat patients features a normalising imperative that is weighted with moral assumptions.71 Such an interaction refuses the value of embodied difference. This is not a neutral or scientific refusal but a political one, which denies people’s right to exist as they are and obstructs social change in their favour.72 Disability activists use art, as well as more traditional forms of protest, to critique their social marginalisation, and imagine a more just and crip-/disability-friendly society.73 For example, QUILTBAGG is a fat, queer and disabled arts initiative that is informed by the social model of disability. This is an occasional gathering of fat and disabled queers who have an art practice of some kind, organised by Charlotte and her friend, the performer Liz Carr. There is usually a silly theme, such as outer space or Halloween, which we customise to reflect our own identities as ‘aliens’ or ‘monsters’, bringing treats to share and dressing up. We meet in a public area that is accessible to wheelchair users and we are mindful of people’s hidden access needs arising from, for example, autism, little money or fatigue. The gathering is free-form, but with two important activities: firstly, we do a go-around where people talk about who they are and what they make or are currently working on; secondly, we order and eat pizza together. In this way we get to know each other and develop epistemologies

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from sharing our art practice. There are clear parallels here between this group and arts-in-health work that intersects with the medical humanities. Although everybody who comes to QUILTBAGG has an abundance of experience as a medical subject, we do not meet as clinical beings but as cultural workers. Thus, this could not be conceptualised as an arts-in-health intervention. Our conversations are supportive, and it is common for collaborations to arise from the space. The social model, our queerness and cultural practice, connects us, but we are a diverse group of people making use of each other’s histories and cultures to develop a community-based discourse that recognises us as autonomous beings rather than subjects of health or clinical practices. The social model has important ramifications for fat people regardless of whether fat people or the broader disability community recognise this. Carol Schmidt’s essay described how fat people become disabled though medicalisation.74 Cooper’s 1997 paper, titled ‘Can a Fat Woman Call Herself Disabled?’, uses the social model of disability to theorise fat people’s social positioning and to frame medical interventions for ‘normalising’ fat people, such as weight loss, as problematic.75 Others have built on this work, or developed connections between disability and fat:76 recently, Colls and Evans have used the social model to challenge ideas about the ‘obesogenic environment’, suggesting that this model would shift attention away from a concern with identifying environmental factors that might make bodies fat to one that is concerned with questioning the social (e.g. stigma) and physical (e.g. inaccessible built design) elements of environments that might disable fat bodies.77 A social model of fat proposes that it is not fat people who should be made to lose weight, an action that is largely unsustainable and has health risks, but that social change must happen in order for people of all sizes to live good lives. This shift would lead to a fundamentally different approach to fat within clinical settings. The last body of work that we will discuss here, which has the potential to transform medical humanities, involves a mixture of methodology and social justice.78 Research Justice is a term that is emerging from social justice communities, particularly in the US, and their interests in deconstructing knowledge production.79 As with Queer Theory and Disability Activism, Research Justice asks pertinent questions about power and knowledge: who gets to know? How is research used to uphold power? How can research be used to benefit the communities on which it is based? Research Justice is a practical means of working with these questions. At the moment there is an emphasis on participatory, community-based action research methodologies within Research Justice.80 Organisations such as DataCenter, based in Oakland, offer training to enable grassroots organisations, often based in trade union activism, to design and develop their own research projects. People who are often the objects of research, including migrant and undocumented workers in the US, become its owners. Research Justice has not yet developed into working with experimental methodologies or cultural work; moreover, published studies tend to be solidly located in quantitative methodology with some qualitative work beginning to creep in. But the Research Justice values of community ownership and epistemological autonomy could be applied to medical humanities projects with exciting results.

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Research Justice also fits very well with a recent pedagogic turn known by various names, including the Para-Academy.81 This refers to scholarship that takes place beyond the neoliberal university through open-access learning and teaching, especially by academics who have found themselves pushed out of traditional career pathways. Charlotte’s report, ‘No More Stitch-Ups! Media Literacy for Fat Activists’, is an example of one such initiative.82 This study adopts Research Justice values, emerging from and serving the fat activist community, and has been developed and distributed through Para-Academic channels using a Creative Commons licence that allows both free access and sharing. Our collaboration on this chapter could also be regarded as a form of Para-Academic practice, working with our identities as scholars and activists within and outside the university. Medical humanities typically entails similar interdisciplinary collaboration and we see Research Justice and the Para-Academy as media through which to reflect on power within such collaborations in order to open up accounts of fatness to those produced beyond the academy or clinical practice.

Conclusion In this chapter, we have outlined the key elements of fat studies research and its connections to the medical humanities. We have suggested that an engagement between fat studies and medical humanities has the potential to challenge dominant medicalised accounts of fatness and raise important questions about medical encounters with fat bodies in the fields of ethics, education and experience. To do so, we have presented Queer Theory, the social model of disability and Research Justice as fields with potential for enabling a more critical approach to fat within the medical humanities. This involves new forms of knowledge production, dissemination and aesthetics that are accessible to socially marginalised people. At present, there is a clear divide between medical and lay and activist understandings of fatness and there has, to date, been limited engagement between activist communities and the medical humanities. It is clear to many fat people that many health professionals in the West are fatphobic, so we have chosen to disengage with them and talk to our communities in our own ways. Our experiences as medically positioned subjects are often so dismal that we need the resources that cultural activism affords fat activists to engage with medical power without self-destructing or burning out. A more critical medical humanities approach to fatness has the potential to address the roots of these dismal experiences. This will not necessarily be easy and, as with the figure of the killjoy, will necessitate disruption of taken-for-granted approaches to fat within medical and some humanities fields. The three approaches we suggest here will enable this more critical engagement in terms of a scepticism of authoritarianism, a belief in the power of the margins and creation of spaces that are not necessarily professionalised, institutionalised or even funded. These three fields illustrate how activism and cultural work are closely tied together, and how culture could be the medium that brings together a closer and more critically aligned relationship between activism and medicine through the critical medical humanities.

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Further Reading Fat Studies: An Interdisciplinary Journal of Body Weight and Society. Shelley Bovey, The Forbidden Body: Why Being Fat is Not a Sin (London: HarperCollins, 1994). Paul Campos, The Obesity Myth: Why America’s Obsession with Weight is Hazardous to your Health (New York: Gotham Books, 2004). Charlotte Cooper, Fat and Proud: The Politics of Size (London: Women’s Press, 1998). Kathleen LeBesco, Revolting Bodies: The Struggle to Redefine Fat Identity (Amherst: University of Massachusetts Press, 2004). Esther D. Rothblum and Sondra Solovay (eds), The Fat Studies Reader (New York: New York University Press, 2009). Sondra Solovay, Tipping the Scales of Justice: Fighting Weight-Based Discrimination (Amherst: Prometheus Books, 2000). Corinna Tomrley and Ann Kaloski Naylor (eds), Fat Studies in the UK (York: Raw Nerve Books, 2009).

Notes 1. In this paper we use the word ‘fat’ and ‘fatness’ rather than ‘obese’ and ‘obesity’ in line with fat activism, which uses these terms as a means of self-definition and in order deliberately to avoid terms that pathologise fatness; see Charlotte Cooper, ‘Fat Studies: Mapping the Field’, Sociology Compass 4.12 (2010), pp. 1020–34. 2. Bethan Evans, ‘Anticipating Fatness: Childhood, Affect and the Pre-Emptive “War on Obesity” ’, Transactions of the Institute of British Geographers 35 (2010), pp. 21–38. 3. Bethan Evans, ‘ “Gluttony or Sloth”: Critical Geographies of Bodies and Morality in (Anti) obesity Policy’, Area 38.3 (2006), pp. 259–67. 4. Bethan Evans and Rachel Colls, ‘Measuring Fatness, Governing Bodies: The Spatialities of the Body Mass Index (BMI) in Anti-obesity Politics’, Antipode 41.5 (2009), pp. 1051–83. 5. Michel Foucault, Abnormal: Lectures at the Collège de France 1974–75, trans. G. Burchell (New York: Picador, 2003 [1999]). 6. Cooper, ‘Fat Studies’. 7. There is some debate within critical fields about the terminology used (varying between critical obesity studies, critical weight studies and fat studies). See Lee F. Monaghan, Rachel Colls and Bethan Evans, ‘Introduction: Obesity Discourse and Fat Politics: Research, Critique and Interventions’, Critical Public Health 23.3 (2014), pp. 249–62. Here we use Fat Studies, as that most closely aligns with our politics and the literatures to which we refer. 8. HAES is an emerging field within dietetic practitioner communities that divorces health from weight/size. For more information, see Linda Bacon and Lucy Aphramor, ‘Weight Science: Evaluating the Evidence for a Paradigm Shift’, Nutrition Journal 10.9 (2011), pp. 1–13. 9. Sarah Atkinson, Bethan Evans, Angela Woods and Robin Kearns, ‘The “Medical” and “Health” in a Critical Medical Humanities’, Journal of Medical Humanities (forthcoming). 10. Esther D. Rothblum, ‘Why a Journal on Fat Studies?’, Fat Studies: An Interdisciplinary Journal of Body Weight and Society 1.1 (2012), pp. 3–5. 11. Esther D. Rothblum and Sondra Solovay (eds), The Fat Studies Reader (New York: New York University Press 2009); Corinna Tomrley and Ann Kaloski Naylor (eds), Fat Studies in the UK (York: Raw Nerve Books, 2009).

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12. See Charlotte Cooper, Fat and Proud: The Politics of Size (London: Women’s Press, 1998); ‘Economic and Social Research Council Fat Studies and Health at Every Size Seminars’ (accessed 30 August 2011); Kathleen LeBesco, Revolting Bodies: The Struggle to Redefine Fat Identity (Amherst: University of Massachusetts Press, 2004); Rothblum and Solovay (eds), The Fat Studies Reader; Rothblum, ‘Why a Journal on Fat Studies?’; Tomrley and Kaloski Naylor, Fat Studies in the UK; Patti Lou Watkins, Amy E. Farrell and Andrea Doyle Hugmeyer, ‘Teaching Fat Studies: From Conception to Reception’, Fat Studies: An Interdisciplinary Journal of Body Weight and Society 1.2 (2012), pp. 180–94. 13. World Health Organisation, Obesity: Preventing and Managing the Global Epidemic, WHO Technical Report Series 894 (Geneva: World Health Organisation, 2000). 14. For reflection on the meaning of the term ‘critical’ in this context, see Rachel Colls and Bethan Evans, ‘Questioning Obesity Politics: Introduction’ (special issue on critical geographies of fat/bigness/corpulence), Antipode 41.5 (2009), pp. 1011–20. 15. Cooper, ‘Fat Studies’, p. 1020. 16. Sara Golda Bracha Fishman, ‘Life in the Fat Underground’ (1998) (accessed 28 August 2008); Greta Rensenbrink, ‘Fat’s no Four-letter Word: Fat Feminism and Identity Politics in the 1970s and 1980s’, in Elena Levy-Navarro (ed.), Historicizing Fat in Anglo-American Culture (Columbus: Ohio State University Press, 2010), pp. 213–43. 17. FaT GiRL Collective, FaT GiRL (San Francisco: FaT GiRL, 1994); Stefanie Snider, ‘Fat Girls and Size Queens: Alternative Publications and the Visualizing of Fat and Queer Eroto-politics in Contemporary American Culture’, in Rothblum and Solovay (eds), The Fat Studies Reader, pp. 223–30; V. Vale, ‘Fat Girl’, in V. Vale (ed.), ZINES! Volume One: Incendiary Interviews with Independent Publishers (San Francisco: Re/Search Publications, 1999), pp. 130–49. 18. Charlotte Cooper, Fat Activism: A Queer Autoethnography, unpublished thesis (University of Limerick, 2012); Charlotte Cooper, ‘A Queer and Trans Fat Activist Timeline: Queering Fat Activist Nationality and Cultural Imperialism’, Fat Studies: An Interdisciplinary Journal of Body Weight and Society 1.1 (2012), pp. 61–74; Beth Ditto and Michalle Tea, Coal to Diamonds (London: Simon & Schuster, 2012); Kathleen LeBesco, ‘Queering Fat Bodies/Politics’, in Jana Evans Braziel and Kathleen LeBesco (eds), Bodies Out of Bounds: Fatness and Transgression (Los Angeles: University of California Press, 2001), pp. 74–87; NOLOSE ‘NOLOSE.org’ (accessed 21 August 2012); Cat Pausé, Jackie Wykes and Samantha Murray (eds,) Queering Fat Embodiment (Farnham: Ashgate, 2014). 19. Marilynn Wann, ‘Foreword: Fat Studies: An Invitation to Revolution’, in Rothblum and Solovay (eds), The Fat Studies Reader, p. xiii. 20. Colls and Evans, ‘Questioning Obesity Politics’. 21. Charlotte Cooper, ‘Maybe it Should be Called Fat American Studies’, in Rothblum and Solovay (eds), The Fat Studies Reader, pp. 327–33. 22. Cooper, ‘A Queer and Trans Fat Activist Timeline’. 23. Cooper, ‘Fat Studies’, p. 1024. 24. Elspeth Probyn, ‘Silences Behind the Mantra: Critiquing Feminist Fat’, Feminism and Psychology 18.3 (2008), pp. 401–4. 25. Cooper, ‘Fat Studies’.

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26. Rosalind Gill, ‘Breaking the Silence: The Hidden Injuries of the Neoliberal University’, in Róisín Ryan-Flood and Rosalind Gill (eds), Secrecy and Silence in the Research Process: Feminist Reflections (London: Routledge, 2010), pp. 228–44. 27. Jacqui Gingras, ‘Critical Dietetics Remains HAES Positive’, Critical Dietetics (2014) (accessed 18 August 2014). 28. Donna Haraway, Simians, Cyborgs and Women: The Reinvention of Nature (Abingdon: Taylor & Francis, 1991). 29. See also Jill Magi, Nev Jones and Timothy Kelly, ‘How Are/Our Work: What, if Anything, is the Use of Any of This?’, in this volume, pp. 136–52. 30. Karen Throsby and Bethan Evans, ‘Must I Seize Every Opportunity? Complicity, Confrontation and the Problem of Researching (Anti-)fatness’, Critical Public Health 23.3 (2013), pp. 331–44. 31. See Whitehead and Woods, ‘Introduction’, in this volume, pp. 3–5. 32. Robert Silcock Downie and Jane Macnaughton, Bioethics and the Humanities: Attitudes and Perceptions (Abingdon: Routledge-Cavendish, 2007). 33. Sondra Solovay, Tipping the Scales of Justice: Fighting Weight-Based Discrimination (Amhurst, PA: Prometheus Books, 2000), p. 189. 34. Evans and Colls, ‘Measuring Fatness, Governing Bodies’. 35. See, for example, Bacon and Aphramor, ‘Weight Science’; Paul Campos, The Obesity Myth: Why America’s Obsession with Weight is Hazardous to your Health (New York: Gotham Books, 2004); Solovay, Tipping the Scales of Justice. 36. See Evans, ‘Gluttony or Sloth’; Evans, ‘Anticipating Fatness’. 37. See Part IV of Rothblum and Solovay (eds), The Fat Studies Reader. 38. Paul Ernsberger, ‘Does Social Class Explain the Connection between Weight and Health?’, in Rothblum and Solovay (eds), The Fat Studies Reader, pp. 25–36. 39. Shelley Bovey, The Forbidden Body: Why Being Fat is Not a Sin (London: HarperCollins, 1994), p. 44. 40. Mark Weisberg and Jacalyn Duffin, ‘Evoking the Moral Imagination: Using Stories to Teach Ethics and Professionalism to Nursing, Medical and Law Students’, Journal of Medical Humanities 16.4 (1995), pp. 247–63, 253. 41. Bovey, The Forbidden Body, p. 45. 42. Natalie Boero, ‘All the News that’s Fat to Print: The American “Obesity Epidemic” and the Media’, Qualitative Sociology 30.1 (2007), pp. 41–60 (p. 51). 43. Julie Guthman, ‘Teaching the Politics of Obesity: Insights into Neoliberal Embodiment and Contemporary Biopolitics’, Antipode 41.5 (2009), pp. 1110–33. 44. Elena Andrea Escalera, ‘Stigma, Threat and the Fat Professor: Reducing Student Prejudice in the Classroom’, in Rothblum and Solovay (eds), The Fat Studies Reader. 45. Watkins, Farrell and Hugmeyer, ‘Teaching Fat Studies’, pp. 180–94. 46. Guthman, ‘Teaching the Politics of Obesity’. 47. Susan Koppelman, ‘Fat Stories in the Classroom: What and How Are They Teaching About Us?’, in Rothblum and Solovay (eds), The Fat Studies Reader. 48. Heidi Lyth, ‘One of the Girls’, Medical Humanities 29 (2003), p. 100. 49. Brian H. J. Briggs, ‘Elizabeth’, Medical Humanities 39 (2013) p. 76. 50. See Tomrley and Kaloski Naylor (eds), Fat Studies in the UK. 51. Charlotte Cooper and Samantha Murray, ‘Fat Activist Community: A Conversation Piece’, Somatechnics 2.1 (2012), pp. 127–38.

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52. Robyn Longhurst, ‘Becoming Smaller: Autobiographical Spaces of Weight Loss’, Antipode 44.3 (2012), pp. 871–88. 53. Francis Ray White, ‘Fat/Trans: Queering the Activist Body’, Fat Studies: An Interdisciplinary Journal of Body Weight and Society 3.2 (2014), pp. 86–100. 54. Samantha Murray, ‘(Un/Be)Coming Out? Rethinking Fat Politics’, Social Semiotics 15.2 (2005), pp. 153–63. 55. Samantha Murray, ‘ “Banded Bodies”: The Somatechnics of Gastric Banding’, in Nikki Sullivan and Samantha Murray (eds), Somatechnics: Queering the Technologisation of Bodies (London: Ashgate, 2009), pp. 153–70. 56. Joyce L. Huff, ‘ “Fattening” Literary History’, Fat Studies: An Interdisciplinary Journal of Weight and Society 2.1 (2013), pp. 30–44. 57. Andrea E. Shaw, ‘ “Tuck in Yuh Belly”: Imperatives of Female Slenderness in Jamaican Dancehall Music’, Fat Studies: An Interdisciplinary Journal of Weight and Society 1.2 (2012), pp. 140–52. 58. For example, Lesley A. Tarsoff, Rachel Epstein, Datejie C. Green, Scott Anderson and Lori E. Ross, ‘Using Interactive Theatre to Help Fertility Providers Better Understand Sexual and Gender Minority Patients’, Medical Humanities (2014) Online First. DOI: 10.1136/ medhum-2014-010516. 59. See the special issue, ‘Queer in the Clinic’, Journal of Medical Humanities 34.2 (2013). 60. Noreen Giffney, ‘Introduction: The “q” Word’, in Noreen Giffney and Michael O’Rourke (eds), The Ashgate Research Companion to Queer Theory (Farnham: Ashgate, 2009), pp. 1–13. 61. See Annamarie Jagose, Queer Theory (Melbourne: Melbourne University Press, 1996); Nikki Sullivan, A Critical Introduction to Queer Theory (Edinburgh: Edinburgh University Press, 2003). 62. Anonymous, ‘QUEERS READ THIS’ (1990) (accessed 21 August 2012). 63. Sara Ahmed, The Promise of Happiness (Durham, NC: Duke University Press, 2010). 64. Fanta Sylla, ‘The Future Weird: An Interview with Derica Shields’, Black Girls Talking (2014) (accessed 22 August 2014). 65. Ahmed, The Promise of Happiness, p. 196. 66. There are parallels here to Rachael Allen’s chapter in this volume. 67. Michael Oliver, The Politics of Disablement (London: Macmillan, 1990). 68. Rebecca Garden, ‘Disability and Narrative: New Directions for Medicine and the Medical Humanities’, Medical Humanities 36 (2010), pp. 70-4. 69. G. Thomas Couser, ‘What Disability Studies Has to Offer Medical Education’, Journal of Medical Humanities 32 (2011), pp. 21–30. 70. See Aldebaran, Health of Fat People: The Scare Story Your Doctor Won’t Tell You (Los Angeles/New Haven, CT: The Fat Underground/Largesse Fat Liberation Archives, 1974); Bryn S. Austin, ‘Fat, Loathing and Public Health: The Complicity of Science in a Culture of Disordered Eating’, Culture, Medicine and Psychiatry 23 (1999), pp. 245–68; Murray, ‘ “Banded Bodies” ’; Carol Schmidt, ‘Do Something About Your Weight’, in Susan E. Browne, Debra Connors and Nanci Stern (eds), With the Power of Each Breath: A Disabled Woman’s Anthology (San Francisco: Cleis Press, 1985), pp. 248–52; Helena Webb, ‘‘I’ve put weight on cos I’ve bin inactive, cos I’ve ’ad me knee done’: Moral Work in the Obesity Clinic’, Sociology of Health and Illness 31.6 (2009), pp. 854–71.

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71. Paul Campos, Abigail Saguy, Paul Ernsberger, Eric Oliver and Glenn Gaesser, ‘The Epidemiology of Overweight and Obesity: Public Health Crisis or Moral Panic?’, International Journal of Epidemiology 35.1 (2006), pp. 55–60; Michael Gard and Jan Wright, The Obesity Epidemic: Science, Morality, and Ideology (Abingdon: Routledge, 2005); Michael Oliver, The Politics of Disablement (London: Macmillan, 1990); Karen Throsby, ‘The War on Obesity as a Moral Project: Weight Loss Drugs, Obesity Surgery and Negotiating Failure’, Science as Culture 18.2 (2010), pp. 201–16. 72. Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006). 73. Disability Arts Online, ‘Disability Arts Online’ (2014) (accessed 22 August 2014); David Hevey, The Creatures Time Forgot: Photography and Disability Imagery (London: Routledge, 1992). 74. Schmidt, ‘Do Something About Your Weight’. 75. Charlotte Cooper, ‘Can a Fat Woman Call Herself Disabled?’, Disability and Society 12.1 (1997), pp. 31–41. 76. Lucy Aphramor, ‘Disability and the Anti-Obesity Offensive’, Disability and Society 24.7 (2009), pp. 897–909; Hannele Harjunen, ‘Exploring Obesity through the Social Model of Disability’, in Rannveig Traustadóttir and Kristiana Kristiansen (eds), Gender and Disability Research in the Nordic Countries (Lund: Studentlitteratur, 2004), pp. 305–24; April Herndon, ‘Disparate But Disabled: Fat Embodiment and Disability Studies’, National Women’s Studies Association Journal 14.3 (2002), pp. 121–37. 77. Rachel Colls and Bethan Evans, ‘Making Space for Fat Bodies? A Critical Account of “the Obesogenic Environment” ’, Progress in Human Geography (2013). DOI: 10.1177/0309132513500373. 78. See also Patricia Waugh, ‘Afterword: Evidence and Experiment’, in this volume, pp. 153–60. 79. Allied Media Conference, ‘Research Justice for Movements and Community Voices’, Allied Media Conference (Detroit 2012); DataCenter, ‘Research Justice’, DataCenter (2009) (accessed 24 July 2012). 80. Laura María Agustín (ed.), Research for Sex Work, issue 13 (Edinburgh: Global Network of Sex Work Projects, 2012); Reem Assil, Miho Kim and Saba Waheed, An Introduction to Research Justice (2013) (accessed 2 January 2014); Nik Theodore, Beth Gutelius and Linda Burnham, HomeTruths: Domestic Workers in California (Oakland, CA: National Domestic Workers Alliance, DataCenter, 2013). 81. Alex Wardrop and Deborah M. Withers (eds), The Para-Academic Handbook: A Toolkit for Making-learning-creating-acting (Bristol: HammerOn Press, 2014). 82. Charlotte Cooper, ‘No More Stitch-Ups: Media Literacy for Fat Activists’, Obesity Timebomb (2013) (accessed 25 October 2013).

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13 READING THE IMAGE OF RACE: NEUROCRIMINOLOGY, MEDICAL IMAGING TECHNOLOGIES AND LITERARY INTERVENTION Lindsey Andrews and Jonathan M. Metzl

Introduction n 26 April 2013, the Wall Street Journal published an essay by neurocriminologist Adrian Raine promoting his newest book, The Anatomy of Violence: The Biological Roots of Crime. On the newspaper’s website, an image of a black-andwhite brain scan overlaid with handcuffs headed the essay. Clicking ‘play’ turned the image into a video filled with three-dimensional brain illustrations and Raine’s claims that some brains are simply more biologically prone to violence than others. Rejecting what he describes as ‘the dominant model for understanding criminal behaviour in the twentieth century’ – a model based ‘almost exclusively on social and sociological’ explanations1 – Raine wrote that ‘the genetic basis of criminal behaviour is now well established’ through molecular and behavioural genetics.2 More importantly for Raine, medical imaging techniques (MIs), including magnetic resonance imaging (MRI), positron emission tomography (PET) and computerised axial tomography (CAT), helped researchers pinpoint the physical location of an individual’s genetic inheritance and disposition to violent crime. According to Raine, a leader in the field, neurocriminology is indebted to advances in brain imaging, which not only show that violent criminality is a disease, but also offer diagnostic possibilities that may lead to more effective forms of treatment for those predisposed to crime. Raine’s widely reviewed and disseminated book serves as an example of a number of popular texts that have appeared in the past several decades that use the techniques of neuroscience to bolster theories about the relationships between biology and behaviour – speculations that carry with them embedded cultural ideas about race or gender. Raine, an endowed professor of psychiatry and criminology at the University of Pennsylvania, provides a particularly important example, as his book attempts to de-race one of the most racially charged of contemporary discourses in the US, criminology, through appeals to the cultural neutrality of neuroscience imaging. Paradoxically, in order to do so, The Anatomy of Violence reclaims the troubling legacy of Cesare Lombroso, the nineteenth-century psychologist, anthropologist and eugenicist

O

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often described as the father of criminology. In a contemporary era supposed to have overcome the overt racism of previous centuries, Raine therefore finds himself necessarily emphasising his distance from Lombroso’s racial taxonomies. While lauding Lombroso’s ‘emphasis on physiology and brain traits’, which ‘proved to be prescient’,3 Raine simultaneously rejects his theory of ‘atavistic stigmata’ that marked particular racial groups as evolutionarily regressive and prone to criminality.4 Raine’s rejection is in part framed as autobiographical indignation: ‘Of course I reject Lombroso’s evolutionary scale that placed Northern Italians at the top and Southern Italians at the bottom,’ he writes. ‘Not least of all because I am half [Southern] Italian . . . I am not an evolutionary throwback to a primitive species.’5 While Raine points to his own identity as an obvious indicator of the post-racial nature of neurocriminology, his protestations mask the emergence of racialisation in newly coded ways in the contemporary era. He presents ‘proof’ of the relationships between brain physiology and psychological abnormality as objective, empirical and value-neutral, deferring repeatedly to brain scans, which are machine-mediated and must therefore, surely, be race-blind. In light of high-tech and precise imaging practices, investment in race appears biologically suspect or anachronistic – dependent on racial categories, such as Northern and Southern Italians, which are now, at least in the US, laughably outdated.6 At the same time, Raine manages to avoid any discussion of the most obvious racial problems that pervade current law enforcement and criminological practices, such as racial profiling and the over-representation of men of colour in the penal system. He also fails to acknowledge in any substantial way the continued use of race as a taxonomic category in the studies he cites. His work then capitalises on the fantasy of a ‘post-racial’ America that need not attend to embedded structures of race and racism as it simultaneously builds on a multi-decade-long resurgence of cultural investment in biological determinism, which had once fuelled race science.7 Raine’s timing could not have been more fortuitous: a mere few weeks before the article’s publication, US President Barack Obama revealed that $100 million in funding would go to an expansive brain mapping initiative, which he billed as ‘the next great American project’.8 Although official announcements focused on the project’s potential medical implications – such as treating mood disorders or brain injuries – scientists and journalists alike soon began to speculate about the ways in which brain mapping could enhance knowledge about crime, in terms of both predictability and personal responsibility. For those involved in the project and for Raine, brain imaging could give access to a truth about the self that operates, unclouded by ideas about race or ethnicity, at levels of biological substrates and brain structures that are seemingly the same in all peoples.9 In this chapter we argue that MIs are never separable from their cultural contexts, and that their legibility emerges within a racialised legacy of image production both within and outside of medicine in the US. We maintain that investigation into the racialised interpretation and circulation of MIs is necessary for understanding their deployment in contemporary medical and paramedical contexts.

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While work in the medical humanities has been especially attuned to considering the ways in which medical knowledge is embedded in culture, attention to race within the field has primarily focused on individual racial and ethnic difference between doctors and patients Yet, as Jonathan M. Metzl demonstrates in The Protest Psychosis, race is embedded not in individuals, but in the very structure of diagnostic medicine.10 Here, we further that argument by showing how diagnostic visualisation technologies are not themselves race-neutral tools, but tools whose utility and desirability are caught up in a racialised history of psychology that has depended on raced imagery. In what follows, we first offer a brief critical history of the hermeneutic practices for reading images that characterised diagnostic use of early machine-mediated medical images, especially photography, which are still borne in the legacy of contemporary MIs. We suggest that mid-century literary writers, especially those pathologised by the proliferation of diagnostic photography and medical imaging, were especially attuned to the linguistic practices required to give meaning to the visualisation of psychic symptomatology. Examining Ralph Ellison’s 1952 novel, Invisible Man, which explored relationships between vision, race and psychological knowledge, we argue that his ekphrastic practice – using linguistic strategies to describe visual images and their production – reveals medical images’ non-transparency and the interpretative practices that construct their meaning, giving us critical tools for understanding the interplay of language, text and visuality in contemporary medical imaging. In particular, we show how Ellison’s parody of white neurologists involved in early psychosurgery extracts the tacit cultural assumptions about race that guide supposedly value-neutral scientific practice, privileging white psychological experience as an unmarked ‘normal’ and obscuring the doctors’ capacity to see or value black psychic interiority as substantial or non-pathological. Placing Ellison’s parody of racialised neurological discourse in parataxis with Raine’s contemporary interpretations of MIs – especially as they circulate in his popular text and interviews – shows how even today’s supposedly valueneutral images reinforce a conception of white psychological normality, inadvertently presenting the ‘abnormal’ brain functioning of white patients – most notably white men – as both particularly exceptional and physiologically separable from the white self, and therefore curable, while aberrance continues to appear as the natural functioning of non-white psychology.

Machinic Images: Exteriorising the Racial Interior Underlying both Raine’s efforts and other brain-mapping projects is an assumption of the transparency and desirability of highly technical imaging techniques, as well as a seeming conflation of seeing, knowing and curing – that is, the idea that if we see it, we know it, and will therefore be able to cure it. The popularity of these technologies, among patients and clinicians alike, is bolstered by a cultural perception of machinic vision as unmediated access to the real, as well as an assumption that quantitative data and highly technical processes necessarily bolster expertise.11

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Physicians once depended on the hand-drawn depictions of anatomical interiors – interiors that, no matter how faithfully rendered, bore the marks of interpretation by individual artists – but from the moment of Wilhelm Röntgen’s harnessing of the X-ray in 1895, machine mediation promised to make visible the body’s interior with a technical accuracy unavailable to a human artist.12 Indeed, visualisation technologies and the metaphor of ‘mapping’ – applied to both the genome and the brain – are appealing and reassuring because such images imply ‘proof’ of and mastery over locatable and culturally neutral biological entities.13 As a number of race scholars have shown, medical faith in machine-based diagnostics, far from correcting racial bias, often helps to embed and invisibilise it within larger medical practices and structures. For example, Lundy Braun’s Breathing Race into the Machine demonstrates how the automation of the spirometer naturalised and masked the use of ‘race correction’ for lung capacity measurements – a practice that emerged largely in response to insurance concerns over workers’ compensation– despite there being no biological difference between black and white lungs.14 And Erica Fretwell has shown how foetal sonograms – produced in medical contexts but more often deployed for affective rather than diagnostic purposes – circulate to reinforce a conception of white innocence and national belonging.15 These scholars help us to understand how machine-aided medical knowledge reflects the social contexts from which it emerges. MIs, embedded in a particularly racialised set of interpretive practices, are no exception. The importance of visualisation, metaphorically and actually, in clinical practice is described by Michel Foucault as emerging in the eighteenth century with the rise of the ‘clinical gaze’. In The Birth of the Clinic, Foucault suggests that the modern medical enterprise was directed towards the visual revelation – that is, the ‘exteriorisation’ – of what had formerly been ‘enclosed’ by the body, unavailable to sight, and by consequence, to knowledge.16 In many ways, then, what medical historians call the ‘visual turn’ in medicine – the era from the 1970s onward, marked by the exponential increase in machinebased imaging technologies that offered new ways of seeing inside the body, including the brain – merely offered a new iteration of an old theme. Even before machine-based technologies such as MRI or PET were used to register and render bodily interiors, machinebased images were already imagined to index interiority, and in particular, psychological interiority, as it was written on the body and captured by the photograph. By the middle of the nineteenth century, early psychologists, criminologists, neurologists and phrenologists used photography for diagnostic purposes. Crucially, photographs were used to image not normalcy but abnormality. For example, French neurologist Jean-Martin Charcot photographed hysterics at his famed Salpêtrière clinic as part of the diagnostic process, capturing facial expressions and visual cues that indexed particular psychological maladies.17 Simultaneously, photography’s apparent capacity to capture the external, physical signs of interiority inspired late nineteenth-century phrenological and eugenic portraiture.18 Perhaps most famously, Francis Galton developed a technique known as ‘composite photography’, which overlaid multiple photographs of, for example, known criminals or a racial group in

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order to produce a single image of a ‘type’, resulting in a machine-mediated visual typology of human ‘abnormality’.19 These images helped to cement the idea of an exterior marked by the traits of an individual’s interior, and the transparent and transferable truth of the photograph could then be used to train doctors and criminologists alike – as well as the curious public – to see psychological pathology on the surface of the body, allowing them to know treat, and/or discipline deviance. A similar ‘visual turn’ occurred in the US in the early decades of the twentieth century, thanks in large part to the 200,000-plus photographs produced by the storied Historical Section of the Farm Security Administration (FSA), and the vast body of documentary and commercial work they inspired. As visual and literary scholar Sara Blair notes, ‘the years from the New Deal to the World War II era [were] a historical moment when the aesthetics of public life were deeply indebted to [these] photographic canons.’20 Although the photographs appeared to ‘document’ the ‘truth’ of the effects of the Great Depression, recovery and the Great Migration, they instead staged and ‘churned out images of dispossessed sharecroppers, despairing inner city tenement dwellers, and black dispossession from modernity’, making racial and economic ‘inferiority’ appear ‘natural’ and biological in the ‘reductive typology of the New Deal documentary gaze’.21 Social and psychological diagnostics and plans for therapeutics emerged from these photographic practices, yet, as scholars of visual studies and race have noted, the imagined transparency of the photograph on which they depended actually invented and trained the US’s particular racial gaze, teaching viewers to ‘recognise’ race and associate it with particular behaviours, modes of dress or living conditions, thus inventing and concretising racial types and stereotypes.22 This fact was not lost on black writers and artists of the period, such as Richard Wright, Nella Larson and Ralph Ellison, who questioned the relationships between vision and knowledge about black nature, social life and psychology, while simultaneously exposing the unintended racial codes and interpretative practices demanded of documentary techniques.23 As we detail below, Ellison in particular destabilised the meaning of photography through literary invention that interpreted imaging practices, thus challenging the correspondence between surface image and interior referent, skin and self.

Visualising Minds: Contemporary Medical Imaging, Race, and the Self In a contemporary context, MIs are often deployed to suggest that a biological entity, separable from ‘self’ or mind, might be the cause of psychological pathology. Although MIs themselves are rarely accompanied by demographic labels such as race, the larger stories in which they are embedded often focus on white, middle and upper-class patients who tend to have greater access to advanced medical technologies. Unacknowledged racial disparities, far from ‘de-racing’ the story of the images, hide racial assumptions about selves, their matter and meaning.

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The authority of contemporary imaging practices and the story they tell depends on the historical construction of the photograph as indexical evidence for the study of psychology and sociology.24 As a number of medical historians and visual studies theorists have noted, knowledge from medical images is not ‘given’ or transparent; these images require interpretation, and their interpretation is embedded in language.25 MIs, in fact, use no photographic lens to produce their images; they are anthropomorphised, graphic renderings of data that could otherwise be represented as a chart or a graph, and their meaning is often ambiguous in clinical contexts, but becomes stabilised through popular circulation. Yet, even those cultural critics and historians who expose the complexities and limits of medical imaging technologies, as well as their dependence on cultural contexts and circulation for meaning and authority, have little to say about any contemporary relationship between race and medical imaging.26 One might assume from these texts – corroborating Raine’s own assumption of the post-racial nature of a neurocriminology dependent on MIs – that the images themselves are de-raced. Today, the historical imaging practices that were once offered as, say, phrenological or eugenic evidence, linking the visible surface of the body to psychological pathology and biological inferiority, seem outdated examples of pseudoscience. The sophisticated imaging practices deployed in the present render bodily interiors that seem unmarked by the racial codes of what anti-colonial psychologist Frantz Fanon called ‘epidermalisation’ – the ‘fact of blackness’ written on/as the skin.27 And yet, the undergirding assumptions of racially inflected sciences such as craniology that so appealed to Lombroso – assumptions about the correspondence between visible, localised physiological features and internal faculties of the mind – remain embedded in segments of contemporary biopsychiatry and neuroscience.28 Along these lines, medical anthropologist Joseph Dumit notes that, for neuroscientists, questions about brain localisation were the right questions; phrenologists had simply used the wrong technology.29 For example, the areas of the brain imaged and mapped by PET correspond to ‘a moral circuit, reasoning, anxiety, social skills, sexuality, intelligence, learning, language, word generation, colour perception, form perception, and various kinds of memory’ and are ‘similar to the kinds of faculties mapped by the phrenologists’.30 Yet phrenologists only had access to the visible and tactile exterior of the skull. The arrival of MRI and PET in the 1980s and 1990s seemed to provide new and necessary technologies for seeing neurological interiors, and the contemporary circulation of their images seems to confirm the facticity of a localised and visible correspondence between brain function and behaviour. MRI and PET technologies use machines to register movements inside the body and render those movements as anatomical images. While MRI provides information about the placement and activity of hydrogen atoms in the body,31 PET traces the movement of a radioactive isotope, rendered as cross-sectional views through time’.32 As Kelly Joyce notes, the choice to present MR information as images was highly contested and culturally specific. Some early users of nuclear magnetic resonance (NMR) imaging, the technology that would eventually become MRI, resisted translating the

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numerical data of the technology into anthropomorphic images that bore no necessary relationship to the information produced. For that reason, for the first several decades of use, MR images were presented in scientific and medical publications as both numerical and pictorial information. Eventually, due largely to practical aspects of clinical diagnostics, images became the primary output of MRI; radiologists who had already been trained to read images could also use their sensorial attunement to read the fine gradation of MRI, which meant that MRI assessment could be handled by existing radiology departments.33 The move to visualisation was particularly fortuitous for the makers of PET, whose images were rendered in colour, unlike black-and-white MRIs, which appealed to popular media, thus popularising the images and creating social demand for them.34 According to Dumit, ‘brain images travel’ beyond the clinic (or, more often, the courtroom-as-clinic imagined by Raine), and ‘their persuasive power and objective authority over human nature is used in many arenas – science journalism, movies, criminality, mental illness, patient activism, doctor’s offices.’35 By the 1990s, popular magazines such as Newsweek were not only showing us the precise locations of ‘Depression’ and ‘Mental Retardation’ in multi-coloured PET scans, but also suggesting that we, too, could decode the images (Figure 13.1).36 Guidance offered in the form of captions – which set the abnormal image against a comparative ‘normal’ one – rendered the PET scans meaningful to a reader. While the popular press’s presentation of PET images made them appear to serve a diagnostic function, the images were actually collected in order to study people who had already been diagnosed. Unlike MRIs, used to locate a tumour and diagnose cancer, images of brain activity are most useful for study rather than diagnosis of mental illness. While a group of images, chosen to maximise the illustration of visible difference, might at best indicate correlation, they say nothing of causation. Specific images, however, are chosen for publication in order to maximise the illustration of visible difference, and the accompanying texts concretise the ‘meaning’ of the images. The imagined relation between the visualised brain and the ‘mind’ has important implications for how we understand and narrate mental disorder. In the last several decades, anti-stigmatisation movements for mental illness have encouraged people to think of mental illness as a biological disease, a ‘disease just like any other’. Such an approach, bolstered by the popularity of brain imaging, has complex (and often unintended) political ramifications.37 It is consonant with and bolstered by the popularity of brain imaging. Popular images that localise brain function allow patients and clinicians alike to imagine abnormal psychological function and its behavioural consequences as a discrete ‘disease’ entity or invader, like a virus or bacterium, which exists in the brain, but is not integral to the mind-self of the person afflicted.38 Yet the ways in which brain images circulate, and the explanatory narratives that accompany them, do not always normalise and democratise the experience of psychological abnormality, but instead often reinscribe already existing racial assumptions about the natural relationship between non-white races, mental illness and criminality, while reinforcing a conception of white pathology as surprising, tragic and in need of scientific investigation and personal treatment. Use and circulation of medical

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Figure 13.1 Comparative PET scans with accompanying labels indicating ‘type’. First published in Newsweek as ‘PETting the Brain’ in the article ‘Mapping the Brain’ (19 April 1992). The first and second images are © 1992 R. J. Haier and M. S. Buchsbaum; the third is © 1992 M. S. Buchsbaum.

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images – far from their imagined ideal as race-neutral diagnostic tools – help to perpetuate the very forms of image-based racialisation that their ‘unbiased’ machinemediation was thought to overcome.

White Abnormal, Black (Ab)normal: Reading Raine through Ellison The Anatomy of Violence begins with a doubly surprising personal anecdote. While asleep on vacation in Turkey, Raine awoke to an intruder in his room. Against all of his criminological training, he writes, ‘in little more than a second, I had instinctively grabbed the intruder.’39 Although the intruder escaped without being seen by Raine, Raine was given the opportunity to identify him against another suspect and see him punished. The anecdote first surprises because the empirically suspect personal story, with its appeals to identity-based empathy from the reader, is one of the most pervasive rhetorical techniques in a text otherwise invested in asserting the empirical validity of neurocriminology. Secondly, the story seems to contradict the very point Raine most wants to emphasise in his introduction: his criminology has left behind all vestiges of racism. The opening story Raine tells is one that validates rather than rejects the racialised visual codes of early criminology. Faced with choosing between a rougher looking man and a ‘good looking man’, Raine decides that his attacker was the one who ‘had the classic mesomorph physique that early criminologists believed typified criminals’: that is, the stocky and muscular man. While indeed, ‘stocky and muscular’ and ‘good looking’ are not racial categories (and Raine is careful to point out that both men are of the same race), Raine affirms the validity of visual knowledge of types, specifically criminal types. When the man is quickly convicted (without legal representation), for Raine, ‘justice is sweet.’ Raine’s book, which promises to show ‘how biological research can contribute to our understanding of violence, but also how it may lead to benign and acceptable ways of reducing suffering’, thus from its very first pages raises the spectre of race.40 Just as Raine avoids directly using the language of race while simultaneously using racialised imagery, the residues of racialisation throughout the book exceed his careful claims to avoid the biological determinism that has historically characterised race science. Raine at times makes clear assertions about the complex and undetermined relations between biology and social functioning: ‘biology is not destiny’; social factors matter; ‘crime, after all, is a social construction.’41 Yet, he points out the social basis of definitions of crime in order to dismiss the efficacy of the social study of criminality. In contrast to most contemporary critics of the prison industrial complex, who understand the rapid increase in prison populations throughout the 1970s and 1980s largely in response to economic factors, including the birth of neoliberalism,42 Raine places the blame on the ‘the heavy emphasis on an exclusively social approach to crime and violence throughout the last century’.43 What is needed to usher in a new era of rehabilitation and criminological therapeutics is to ‘unlock the causes of crime with a set of biosocial keys forged from a new generation of integrative interdisciplinary

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research combined with a public health perspective’.44 For Raine, the problem is that the social is always biological. In Invisible Man, Ellison explored the racial implications of the imagined relationship between biology and criminality in therapeutic contexts, and attention to his narrative helps uncover how Raine not only replicates an old narrative about race, visibility, neurology and crime, but also further encodes the narrative in his presentation of MIs. Indeed, his story would come as no surprise to Ellison, who spent a significant portion of his life troubling relationships between visibility and knowledge in order to account for the cultural ‘schizophrenia’ of the US, a diagnostic metaphor for the ways in which black people experienced the promise of equality under the sign of democracy while constantly being denied its full expression.45 Ellison’s use of the psychiatric category ‘schizophrenia’ turned out to be particularly prescient because, as Metzl has shown, over the next several decades, through the tumultuous years of the civil rights movement, some psychiatrists began to associate Black Power rhetoric with insanity, and the symptomatology of ‘protest psychosis’ entered the diagnostic rhetoric surrounding schizophrenia.46 In an episode that takes place in a factory-owned hospital, Ellison places the cultural conflation of blackness, criminality and generalised insanity in the context of emergent biopsychiatry and psychosurgery. Coming to after being knocked unconscious in an explosion, the narrator hears the memory of his grandmother’s voice singing to him, punctuated by the voices of two men. As he awakens, he begins to realise that these men are debating the best way to ‘treat’ him for his injuries. They suggest both lobotomy and castration, a pairing that hints at the history of race-based medical experimentation and criminal punishments in the US that were imposed to affect the reproductive capacities of black people and often justified by the assumption of an intellectual inferiority. The doctors in the chapter finally decide on a new, experimental, non-surgical lobotomy: electroshock therapy. Knowledge of the racial history of medicine invoked by Ellison complicates the dialogue between the white doctors in this scene, which parodies the racist presumptions of psychiatric discourse in the first half of the twentieth century. The conversation begins with an ironic portrayal of racist presumptions about the statistical utility of a black person for knowledge about human psychology more generally. As one doctor says: I believe it a mistake to assume that solutions – cures, that is – apply in, uh . . . more primitive instances, are, uh . . . equally effective when more advanced conditions are in question. Suppose it were a New Englander with a Harvard background.47 Set against the possibility of a ‘more advanced’ instance – assumed to be both white and rich, a New Englander with a Harvard background – the narrator is described as ‘primitive’. Invocation of the word ‘primitive’ makes it clear that this is not a rejection of psychological universalism, but rather of the narrator’s capacity to be a statistically valid ‘human’. Blackness appears as a sign of inherent psychological abnormality, a psychological ‘case’ that, according to one of the doctors, ‘has been developing some

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three hundred years’;48 since the birth of the transatlantic slave trade, abnormality has been the black norm. Meanwhile, whiteness indexes not only the potential for normality, but also the potential for significant and meaningful abnormality. Without being examined by the doctors, the narrator’s psychological pathology – his normal abnormality – is merely assumed on the basis of his ‘primitive’ race. Furthermore, once he is treated, the doctor says, ‘the result is as complete a change of personality as you’ll find in your famous fairy-tale cases of criminals transformed into amiable fellows after all that bloody business of brain operation.’49 His single point of comparison for his black patient is a criminal, thus conflating black psychology – already assumed to be abnormal – with criminal behaviour. In order to be treated, the invisible man is fixed ‘beneath a slab of glass’, as though he were a specimen on a slide. Thus framed, the invisible man also resembles the photographic portraits that pervade the novel and act as triggers for memory and psychological transformation. As both Sara Blair and Lena M. Hill have shown, documentary photography and portraiture serve as central tropes of the novel, and Ellison’s engagement with them is one that evinces scepticism about their capacity to index interior ‘truth’.50 Instead of presenting a documentary photograph, however, the doctors stage the invisible man as transformed into evidence and made visible to the doctors in the racialised production of the black-man-as-image. In contrast to the doctors, Ellison privileges the narrator’s complex interiority through linguistic description of the experience of being imaged, and the scene refuses the corroboration of the produced image and imagined idea of his black brain: as primitive and readily available to visualisation. Indeed, his slippery, ironic, non-transparent answers to straightforward questions about his name and identity – which he responds to with references to black folklore characters such as Brer Rabbit or rhetorical questions used to ‘play the dozens’ – refuse the possibility of transparency demanded of visual images, requiring both cultural context and interpretation to understand.51 In doing so, not only he challenges the assumption of transparency assigned to medical and machine-made images, but moreover challenges its desirability. Imaging gains meaning in social contexts and carries with it a social history of racial assumptions that is simultaneously difficult to see and difficult to escape. This remains especially true in a criminological context, and helps us to unpack the unexpected and hidden ways in which race emerges in Raine’s Anatomy of Violence.

Likeness: Whiteness and the Image of Empathy Ellison’s emphasis on the ways in which language guides epistemological assumptions – even seemingly ‘objective’ scientific ones – offers a guide for unpacking some of the difficulties encoded in Raine’s text. Despite Raine’s scientific care in reminding readers that many of the connections he draws from ‘promising’ research are speculative, the narrative of neurocriminology unfolds as one that establishes concrete rather than suppositional relations between brain function and violent criminality. Indeed, the meaning of the empirical evidence Raine presents ends up residing somewhere between his careful

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warnings and the speculations and personal anecdotes he deploys. It is precisely those personal anecdotes and their appeals to readerly empathy that structure the embedded racial narrative of Anatomy. Central to Raine’s The Anatomy of Violence, literally, is an inset of brain images of violent criminals, collected by Raine. A typological label (‘Normal’, ‘Multiple Murderer’, ‘Murderer’) accompanies each image, except one. Closer inspection of the caption reveals that image to be of the author’s own brain (Figure 13.2). The first chapter, ‘Basic Instincts: How Violence Evolved’, offers an autobiographical account of Raine’s entry into neurocriminology through his discovery of Richard Dawkins, whose The Selfish Gene (1976) was foundational to the fields of sociobiology and evolutionary psychology. Raine then extrapolates his sociobiological perspective from outdated, controversial studies, such as Napoleon A. Chagnon’s Yanomamö: The Fierce People (1968). Raine’s dependence on the Yanomami example, and his frequent reference to them as ‘primitive’, sets the stage for his larger argument by using research into brain and genetic functioning to corroborate the ethnographic narratives of primitivist anthropologies, insinuating that non-Western cultures may have evolved to be naturally more violent than Western ones. Although Raine admits that sociobiology may be ‘an untestable theory’,52 and presents his main goal as laying out the contemporary

Figure 13.2 Figure 3.3 from The Anatomy of Violence: The Biological Roots of Crime by Adrian Raine, copyright © 2013 by Adrian Raine. Used by permission of Pantheon Books, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. All rights reserved.

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field of research about the relations between biology and crime, it quickly emerges that his main impetus is, in fact, to create an explanatory narrative about that research, a narrative grounded in the speculations of a sociobiological perspective. This narrative has resonances with Ellison’s much older story of race psychology. For example, in the chapter ‘Cold-Blooded Killers’, Raine compares the stories of ‘Raj’, a Mauritian male with the low resting heart rate of a ‘thug’, with Theodore ‘Ted’ Kaczynski, the white, domestic US terrorist known as the Unabomber.53 In Raine’s account, Raj is just one among many Mauritian ‘kids’ whose naturally low heart rate, combined with lack of stimulation in early life, leads to criminality. By contrast, Kaczynski’s ‘campaign of public terror’, which affected a largely white US community, makes him a particularly spectacular example of the urgent need for therapeutics: for testing, marking and intervening in childhood development based on biomarkers. In the chapter ‘Murderous Minds’, Raine magnifies the urgency of attending to therapeutic possibilities by arguing that even people with backgrounds similar to his own – such as Randy Kraft, who was also ‘the son of respectable, hardworking parents’, who ‘grew up in a middle class, conservative area’54 – could become serial killers. He goes on to interpolate readers into a shared subject position, describing the white Randy as, potentially, ‘like you or I’.55 He then sets Kraft against the counter-example of a person of colour, Antonio Bustamante, who serves as ‘Raj’ to Kraft’s ‘Kaczynski’. Mexican–American Bustamante serves as an example of ‘the vast majority of killers’, a formerly ‘law-abiding immigrant’ who went on to become a career criminal and ‘a messy and disorganized killer’.56 He is the normal abnormal – ‘less memorable’ and ‘common-variety’ – while the white Kraft is particularly curious and spectacular, the exceptional abnormal. Three of the nine inset image sets are dedicated to illustrating the Kraft/Bustamante example that most explicitly links Raine’s personal history to one of his subjects of study. According to Raine, PET shows that one-time murderers, the ‘common-variety’ exemplified in the ‘Murderer’ image of Bustamante’s brain, tend to have reduced ‘activation in the prefrontal cortex’, indicating increased ‘raw emotions’, ‘risk-taking’ and ‘impulsivity’, as well as ‘poor social judgment’ and ‘loss of intellectual flexibility’.57 By contrast, in the image of Randy Kraft’s brain, ‘labelled “Multiple Murderer” ’, ‘that part of the brain is lit up like a Christmas tree’.58 Kraft’s brain is exceptional not only against Bustamante’s ‘normal abnormal’, but also against the normal control. In reference to the figure, labelled 3.3 in Anatomy, Raine writes: You can see more activation in the middle – the thalamus – as well as excellent activation in of the occipital cortex . . . and the temporal cortex . . . . You don’t see as much activation in either the normal control or the one-off killer. But we did see someone else who had a brain scan very much like Randy’s. That scan is shown above Randy’s in Figure 3.3. . . . It’s not a perfect match but it does seem more similar to Randy’s than the others. Note the plentiful prefrontal activation at the top, the bilateral thalamic activation . . . , and the temporal lobe activation on the sides. What’s interesting about this brain scan is that it’s my brain scan.59

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In Raine’s reading of the specific images, he presents his and Kraft’s brains as both exceptional and exceptionally similar, proven through the localisable activities of their brains. Directly addressing the reader, Raine again notes his biographical similarity to Kraft: ‘As you noticed earlier, it’s hard for me not to see parallels between Randy’s life and mine.’60 But, he asks, ‘Am I a serial killer?’61 The obvious answer is ‘No’, which indicates that ‘Clearly there are “normal” people like myself – and yourself – with “abnormal” brain scans.’ Already, having earlier drawn the reader into his circle of likeness, of white middle-class childhoods, ‘normal’ and ‘abnormal’ here resonate with their intended meaning, a meaning denied to Bustamante and other people of colour, whether criminals or not. Ellison used cultural codes and references – linguistic play and irony – to reveal his black narrator’s complex interiority and refuse the simple, typological visualisation of his brain as always-already, naturally, pathological and criminal. Reading the novel alongside Raine’s account allows us to attune ourselves to the ways in which the supposed neutrality of images can code over racial assumptions that still inhere in their interpretation, and encourages us to pay attention to just who fits readily into the typology he presents: who is worthy of specific attention and who is just a case? Who has a separable self, and whose abnormality is positioned as ‘normal’?

Conclusion Today, courts depend heavily on brain imaging techniques to determine criminal culpability.63 The assumption that the images’ visual markers translate readily into behavioural causes invokes two legal possibilities: one in which the criminal suspect would not be responsible for his/her actions due to the biological invader of brain difference, and the other in which the diseased brain is incurable and its host in need of permanent incarceration. In Raine’s imagining, brain imaging will allow for a ‘disease model’ of criminality that will encourage therapeutics rather than punishment. Pushing the possibilities of criminological brain imaging to their speculative limits, the final two chapters of Raine’s book detail an imagined future in which predictive brain imaging will allow early intervention and treatment, preventing crime and relieving the suffering of potential criminals and potential victims alike. Yet, our analysis of Raine suggests that his book crosses the fine line between speculation and established fact, between predictive potentials and contemporary diagnostic limits. In his account, brain imaging is giving us not only ‘important clues as to which brain regions – when dysfunctional – could give rise to violence’ but also speculations about brain localisation that will give way to reality.63 Raine’s insistence about the future of neurocriminology, one that assumes the power of brain imaging to locate the biology of violence, positions himself – a leader in the field – as a social saviour, poised to intercede against crime before it occurs, based on the guarantee of the future diagnostic capacity of neurocriminology grounded in machinic intervention. In fact, the future Raine imagines looks more and more like the past evoked by Ellison, with men of colour indicted as crazy and criminal based on biology before

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they have even had a chance to act. The historical conflation of race, insanity and criminality that pervaded Ellison’s lifetime does not disappear in the ‘post-racial’ era, nor in Raine’s work, though it does lose the overt language of racial typology. Instead, this conflation appears in newly coded ways, through narratives about images and their medico-scientific meanings, ways that perpetuate a submerged history of the image of race.

Further Reading Jim Downs, Sick from Freedom: African–American Illness and Suffering during the Civil War and Reconstruction (Oxford: Oxford University Press, 2015). Sander Gilman, Difference and Pathology: Stereotypes of Sexuality, Race, and Madness (Ithaca, NY: Cornell University Press, 1995). Avery Gordon, Ghostly Matters: Haunting and the Sociological Imagination (Minneapolis: University of Minnesota Press, 2008). Bettyann Holtzmann Kevles, Naked to the Bone: Medical Imaging in the Twentieth Century (New York: Basic Books, 1998). Khalil Gibran Muhammed, The Condemnation of Blackness: Race, Crime, and the Making of Modern Urban America (Cambridge, MA: Harvard University Press, 2011). Britt Rusert, ‘The Science of Freedom: Counter-Archives of Racial Science on the Antebellum Stage’, African American Review 45.3 (2012), pp. 291–308. Shawn Michelle Smith, Photography on the Color Line: W. E. B. Du Bois, Race, and Visual Culture (Durham, NC: Duke University Press, 2004). Catherine A. Stewart, ‘Crazy for this Democracy: Postwar Psychoanalysis, African American Blues Narratives, and the Lafargue Clinic’, American Quarterly 65.2 (2013), pp. 371–95. Richard Wright, Native Son (New York: Harper Perennial, 2014 [1940]).

Notes 1. Adrian Raine, The Anatomy of Violence: The Biological Roots of Crime (New York: Vintage Books, 2013), p. 8. 2. Adrian Raine, ‘The Criminal Mind’, Wall Street Journal (26 April 2013) (accessed 10 August 2015). 3. Raine, ‘The Criminal Mind’. 4. Raine, The Anatomy of Violence, p. 13. 5. Ibid., p. 13. 6. The implied humour of Raine’s point resides in the culturally pervasive idea of whiteness – under which both groups now fall – as unraced. However, the definition of whiteness in the US is not solely a scientific phenomenon, but instead is caught up in related legal distinctions; racial difference was not erased, but instead, the net of whiteness as a legal and property value was widened. See Cheryl Harris, ‘Whiteness as Property’, Harvard Law Review 106.8 (1993); Theodore W. Allen, Class Struggle and the Origin of Racial Slavery: The Invention of the White Race (Hoboken, NJ: Hoboken Education Project, 1975); and

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David Roediger, The Wages of Whiteness: Race and the Making of the American Working Class (New York: Verso, 2007). 7. See H. Roy Kaplan, The Myth of Post-Racial America: Searching for Equality in the Age of Materialism (Lanham: Rowan & Littlefield, 2011); Eduardo Bonilla-Silva, Racism without Racists: Color-Blind Racism and the Persistence of Racial Inequality in America (New York: Rowan & Littlefield, 2009); and Tyrone Forman, ‘Post-Racialism: Its Meaning and Social Consequences’, in Charles Gallagher and C. Lippard (eds), Race and Racism in the United States (Westport, CT: Greenwood Press, 2014). 8. Quoted in Susan Young Rojahn, ‘Why Obama’s Brain-Mapping Project Matters’, MIT Technology Review (8 April 2013) (accessed 10 August 2015). 9. Helen Shen, ‘US Brain Project Puts Focus on Ethics’, Nature (14 August 2013), pp. 261–2. 10. See Jonathan M. Metzl, The Protest Psychosis: How Schizophrenia Became a Black Disease (Boston: Beacon Press, 2010). 11. Kelly A. Joyce, Magnetic Appeal: MRI and the Myth of Transparency (Cornell, NY: Cornell University Press, 2008), pp. 60–1. 12. José van Dijck, The Transparent Body: A Cultural Analysis of Medical Imaging (Seattle: University of Washington Press, 2005), p. 4. 13. See Joyce, Magnetic Appeal, p. 11. 14. See Lundy Braun, Breathing Race into the Machine: The Surprising Career of the Spirometer from Plantation to Genetics (Minneapolis: University of Minnesota Press, 2013). 15. Erica Fretwell, ‘Ultrasonic Youth’, MIT: Media in Transition 8, May 2013. Conference Paper. 16. Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception (New York: Vintage, 1994), p. 195. 17. See John Tagg, The Burden of Representation: Essays on Photographies and Histories (Minneapolis: University of Minnesota Press, 1993). 18. See Alan Trachtenberg, Reading American Photograph: Images as History, Mathew Brody to Walker Evans (New York: Hill & Wang, 1990). 19. Tagg, The Burden of Representation, p. 81. 20. Sara Blair, ‘Ralph Ellison, Photographer’, Raritan 24.4 (2005), p. 19. 21. Ibid., pp. 19, 22. 22. See Alan Trachtenberg, Reading American Photographs; and Jacqueline Goldsby, A Spectacular Secret: Lynching in American Life and Literature (Chicago: University of Chicago Press, 2006). 23. See Miriam Thaggert, Images of Black Modernism: Verbal and Visual Strategies of the Harlem Renaissance (Amherst: University of Massachusetts Press, 2010); and Badia Sahar Ahad, Freud Upside Down: African American Literature and Psychoanalytic Culture (Chicago: University of Illinois Press, 2010). 24. See Tagg, The Burden of Representation; Trachtenberg, Reading American Photographs; and Blair, ‘Ralph Ellison, Photographer’. 25. See Lisa Carwright, Screening the Body: Tracing Medicine’s Visual Culture (Minneapolis: University of Minnesota Press, 1995); van Dijck, The Transparent Body; and Joseph Dumit, Picturing Personhood: Brain Scans and Biomedical Identity (Princeton: Princeton University Press, 2004).

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26. See Joyce, Magnetic Appeal; and Dumit, Picturing Personhood. 27. Frantz Fanon, Black Skin, White Masks (New York: Grove Press, 2008 [1952]), p. 11. 28. See, for example, Nicholas Wade, A Troublesome Inheritance: Genes, Race, and Human History (New York: Penguin Press, 2014). 29. Dumit, Picturing Personhood, p. 24. 30. Ibid., p. 23. 31. Joyce, Magnetic Appeal, p. 25. 32. Dumit, Picturing Personhood, p. 2. 33. Joyce, Magnetic Appeal, pp. 38–41. 34. Van Dijck, pp. 11–12. 35. Dumit, Picturing Personhood, pp. 140–1. 36. Ibid., pp. 6, 140. 37. See Ethan Watters, Crazy Like Us: The Globalization of the American Psyche (Free Press, 2010). 38. Jonathan Metzl also treats this issue in relation to gender, especially with regard to the rise of psychopharmaceuticals, in Prozac on the Couch: Prescribing Gender in the Era of Wonder Drugs (Durham, NC: Duke University Press, 2003). 39. Raine, The Anatomy of Violence, p. 3. 40. Ibid., p. 10. 41. Ibid., p. 13. 42. See, for example, Ruth Wilson Gilmore, Golden Gulag: Prisons, Surplus, Crisis, and Opposition in Globalizing California (Berkeley: University of California Press, 2007). 43. Raine, The Anatomy of Violence, p. 9. 44. Ibid., p. 10. 45. See Ralph Ellison, ‘Beating that Boy’, Shadow and Act (New York: Vintage International, 1995 [1964]), pp. 95–102. See also Shelly Eversley, ‘The Lunatic’s Fancy and the Work of Art’, American Literary History 13.3 (2001), pp. 445–68. 46. Metzl, The Protest Psychosis, p. 100. 47. Ralph Ellison, Invisible Man (New York: Vintage International, [1952] 1995), p. 236. 48. Ibid., p. 237. 49. Ibid., p. 236. 50. See Blair, ‘Ralph Ellison, Photographer’; and Lena M. Hill, ‘The Visual Art of Invisible Man: Ellison’s Portrait of Blackness’, American Literature 81.4 (2009), pp. 775–803. 51. Ellison, Invisible Man, pp. 239, 241. 52. Raine, The Anatomy of Violence, p. 36. 53. Ibid., p. 107. 54. Ibid., p. 61. 55. Ibid., p. 62. 56. Ibid., p. 64. 57. Ibid., pp. 67–8. 58. Ibid., p. 72.

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59. Ibid., p. 75. 60. Ibid. 61. Ibid. 62. See Dumit, Picturing Personhood, as well as ‘Chapter 10: The Brain on Trial’ in Raine, The Anatomy of Violence. 63. Ibid.

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14 TOUCHING BLIND BODIES: A CRITICAL INQUIRY INTO PEDAGOGICAL AND CULTURAL CONSTRUCTIONS OF VISUAL DISABILITY IN THE NINETEENTH CENTURY Heather Tilley and Jan Eric Olsén

Introduction hanging ideas on the nature of and relationship between the senses in nineteenth-century Europe constructed blindness as a disability in often complex ways. The loss or absence of sight was disabling in this period, given vision’s celebrated status, and visually impaired people faced particular social and educational challenges as well as cultural stereotyping as poor, pitiable and intellectually impaired. However, the experience of blind people also came to challenge received ideas that the visual was the privileged mode of accessing information about the world, and contributed to an increasingly complex understanding of the tactile sense. In this chapter, we consider how changing theories of the senses helped shape competing narratives of identity for visually impaired people in the nineteenth century, opening up new possibilities for the embodied experience of blind people by impressing their sensory ability, rather than lack thereof. We focus on a theme that held particular social and cultural interest in nineteenth-century accounts of blindness: travel and geography. Our chapter contrasts the writings and portraiture of James Holman, a celebrated British traveller with acquired visual disabilities, with the increasingly formalised pedagogic programmes that were developed in European institutions for blind people towards the end of the century. On the one hand, Holman’s multi-sensory public persona optimistically pointed to ways of knowing the world that were not dependent upon vision. Yet when geographic touch (encompassing both the physiology of the finger tracing maps and objects, and the embodied navigation of space) entered the institution, it became subject to disciplinary control, replicating the conventions of sight and curtailing movement of the body through promotion of local, above global, knowledge. Through contrasting these case studies, then, we aim to show how blindness was constructed in this period variously as visual disability, haptic ability and disability. In particular, we argue for the importance in attending to the ways in which

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blind people were cast as either producers or recipients of sensory knowledge, and the effects this had upon embodied experience. We begin our discussion by briefly considering how disability has been theorised as a medical, social and cultural effect rather than a biomedical fact. G. Thomas Couser rightly argues that disability studies occupies an important place within medical humanities because, as a critical methodology, it locates medicine’s distinctive approach to disability within a broader framework, ‘highlighting not only its power but also its limits’.1 Whilst ophthalmology developed as a medical discipline in the nineteenth century, its limited reach meant that, practically, it did not define the experience of visual impairment. Indeed, Kumari Campbell has recently argued that a critical disability studies approach can correct the ‘distorted . . . picture of the disablement experience’ produced by biomedicalism, by considering not simply what has gone wrong with a body, but also the ‘different proprioceptive ways that deaf, blind, paralysed and intellectually disabled people experience materiality and relations’.2 It is in this spirit that we approach our sources relating to the diverse ways in which people with visual impairments experienced the world in the nineteenth century. Yet we also ask what the field of sensory studies has to offer an investigation into nineteenthcentury blindness, and in what ways it might complement, and complicate, a disability studies approach. For whilst ophthalmology contributed to the construction of visual impairment as a problem in need of a cure, if we extend the reach of medical knowledge to encompass psychological and psychophysiological investigations into the wider human sensorium, then it also admitted the possibilities for senses other than vision to gain information about the world.

Disability Studies: Constructing Blindness Contemporary disability studies scholarship has interrogated the relationship between impairment and disability, theorising disability as a medical, social and cultural effect rather than a biomedical fact.3 Impairment might form part of a person’s biophysiological nature. However, it is not the impairment that disables them; rather, environmental and social factors impede a person with an impairment from participating fully in social, economic and cultural life.4 Rosemarie Garland Thomson argues that narratives of physical disability frequently comprise an ‘exclusionary discourse’.5 For Thomson, disability is produced not by ‘inherent physical flaws, but in social relationships in which one group is legitimated by possessing valued physical characteristics and maintains its ascendancy and its self-identity by systematically imposing the role of cultural or corporeal inferiority on others’.6 Extending Thomson’s analysis to the construction of blindness as disability in the nineteenth century invites us to interpret the ways in which a person with either congenital or acquired visual impairment is marked as defective, as other, in the sighted economy of the period, in which information, emotions and personal relationships were overwhelmingly inscribed within visual networks.7 Indeed, recent critical analyses of blindness in nineteenth-century culture have underscored this framework for

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understanding blindness in oppositional terms to vision. Kate Flint, for example, argues that ‘blindness offers up a central trope for examining the nature and limitations of visual experience’ because, by forcibly reminding one of the fragilities of sight, ‘it presents a challenge to those who assert the dominating nature of the gaze.’8 Whilst there is much that is compelling about Flint’s analysis, it also underplays the association of blindness with touch in the nineteenth-century cultural – and, indeed, visual – imagination, particularly in light of the development of educational programmes for blind people. In nineteenth-century European discourses, blindness – as a sensory impairment – was conceived of not simply as vision’s lack, but also as a condition in which other senses – particularly hearing and touch – functioned in compensatory or refined ways. The theorisation of blind people’s touch can be traced back to Enlightenment debates on the relationship between the senses, particularly vision, and knowledge formation. Following publication of John Locke’s Essay Concerning Human Understanding (1689), in which he argued that there could be no knowledge without sensory experience, Locke was approached by the philosopher William Molyneux with a hypothetical problem. Molyneux questioned whether a blind person restored to sight would be able to know through sight what he had known by touch alone. After Locke published Molyneux’s problem in the second edition of his Essay in 1694, and answered it negatively, it became one of the central philosophical issues of the day. Philosophers, including George Berkeley, Adam Smith and Etienne Bonnot de Condillac, used the problem of the blind man restored to sight as a cornerstone of their investigations into the nature of visual perception.9 Yet, as the disability studies writer Georgina Kleege has more recently reminded us, one of its continued effects was a problematic reduction of blind people to experimental fodder, as their hypothetical experience was allied to an ocular-centric agenda that sought to validate the primacy of perception by the eye.10 These philosophical debates did, however, open the way for a more focused study of the workings of the touch sense in later eighteenth- and nineteenth-century philosophy and medicine, inviting us to reappraise our assessment of the period as a predominantly visual culture, as Vanessa Warne has argued.11 Some philosophers began to pay closer attention to blind people’s perceptual experience in and of itself – not as a phenomenon through which a pure opticality might be witnessed thanks to the medical miracle of sight restoration.12 In 1749, for example, Denis Diderot reframed responses to Molyneux’s question by focusing not so much on the psychology of sight, but on the tactual intelligence of blind people he interviewed, or whose biographies he researched.13 Dominated by the sense of touch, his account insists that a blind person could discern not only objects, but also the relations between them (such as symmetry and beauty).14 Diderot anticipated the systematisation of a tactile alphabet for blind people, predicting that such a language for the blind would be fixed in a ‘grammar’ and a ‘dictionary’.15 The desire to understand blind people’s perceptive experience also contributed to the articulation of the haptic sense in the nineteenth century. Today, the term signals a

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range of different sensory activities loosely cohered around the notion of active, wholebody touch and the interoperability of touch and sight.16 Coined towards the end of the nineteenth century, the notion of haptic perception actually emerged from earlier forms of cultural discourse, importantly for our discussion including nineteenth-century scientific investigations into the perceptual faculties of blind people.17 Indeed, the Oxford English Dictionary also defines haptic as ‘having a greater dependence on sensations of touch than on sight, esp. as a means of psychological orientation’.18 The mid-nineteenth century psychophysiologist Alexander Bain, who importantly promoted touch’s place within traditional sensory hierarchies by classifying it as a compound and intellectual, rather than simple sense, argued that ‘in order to represent to ourselves the acquisitions of touch in their highest form, we must refer to the experience of the blind.’19 By the 1850s, scientific treatises on the senses were beginning to evidence blind people’s finger-reading skills in analyses of touch.20 This concept of an active, embodied tactile mode of knowing the world, interoperable with vision, also underpins the geographic project of a famous and groundbreaking early nineteenthcentury traveller with acquired visual impairment. Our next section will detail the ways in which James Holman identified, avant la lettre, as a haptic traveller.

James Holman, Haptic Traveller James Holman was renowned for his extensive exploits through Russia, Siberia, Australia, Africa and South America, and was one of the first travellers to circumnavigate the globe, publishing accounts of his travels between 1822 and 1835.21 Holman was also blind, having contracted an infection in his early twenties that completely destroyed his optic nerves.22 Holman’s self-fashioning in his texts suggests that his blindness facilitated a renewed creative engagement with the world, informed in part by theories of sense perception in cultural circulation, rather than forcing withdrawal and despondency upon him. As Eitan Bar-Yosef has recently argued in a discussion of the construction of disability in Holman’s narratives and those of the deaf traveller, John Kitto, Holman draws attention to the disabilities that other able-bodied travellers might experience. However, while Bar-Josef claims that Holman’s narratives ‘silence’ his disability as he presents himself as an able-bodied (that is, sighted) traveller, we suggest instead that, particularly in his early narratives, Holman witnesses and records events through an emerging haptic sensibility, producing a positive difference from narratives by sighted people.23 He did so largely by drawing attention to his multisensory engagement with the worlds and cultures he explored particularly through touch, smell, sound and visual memory. Holman identified the role of a traveller as to collect and communicate ‘a fund of curious and interesting particulars relative to the scene of his travel, its inhabitants and production’. He recognised, however, that ‘one circumstanced like himself’ who lacks the ‘most important of the senses for acquiring a knowledge of external objects – the power of vision’ must be deemed a ‘solecism’ for presenting his results to the public.24 Indeed, part of the public fascination with Holman’s adventures resided in his status

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as a blind man independently navigating the world. For example, a review of the first volume of Holman’s final book, A Voyage Round the World, that was published in the Morning Post, commented that ‘we should imagine that a person deprived by so terrible an affliction as the loss of sight, of perceiving and appreciating the beauties and wonders of nature could find no enjoyment in foreign travel or perilous adventure; in fact would be utterly unfit for such undertakings.’ The critic cited Holman’s own account of how he perceived the world and responded that ‘his work deserves not only to be read with interest but with confidence.’25 Holman defended strongly and lucidly both his right to travel and the value of his writings, which recorded experiences and data collected in little-travelled lands, such as China, arguing that ‘the intensity of my enjoyments under the system I have adopted, equals, if not surpasses, what other travellers experience who journey with their eyes open.’26 More than this, though, travelling relieved the ‘restlessness of mind’ Holman experienced as a result of his blindness.27 This notion of ‘restlessness’ is tied strongly to Holman’s haptic identity. Holman and others draw attention to his refined sense of touch as a particularly important mode via which he gained knowledge of places, through handling artworks, objects and spaces.28 Indeed, touch shaped the planning of his journeys, as Holman described how, whilst studying the geography of Russia, as well as reading the ‘best authors on the subject’ both ancient and modern, he also would trace his intended route on the map with his finger – an act we will find replicated in portraits of him in which he lays his hand on the globe.29 Holman’s descriptions of touch also articulate the functions of a sense that more closely approaches later definitions of the haptic, rather than tactile, in that it relates to information gathered not simply through the fingers, but also through the whole body, in motion. His descriptions resonate with Paul Rodaway’s more recent definition that haptic geography entails the ability of the body to gather and distinguish information about the size, weight and form of objects – their size, shape and depth of volume – as well as the myriad details about the texture and continuity of their surfaces.30 Whole-body movement is clearly important to Holman and rebounds throughout his narratives. In his 1822 preface, Holman notes how, soon after his sight loss, he began to acquire ‘greater facility of locomotion’ than he could have anticipated, and was gripped by an irresistible desire to travel, travelling firstly around Britain before heading for European adventures starting in France. Whilst this ‘may appear incredible’, he stresses to his reader that the loss of one sense ‘is uniformly compensated by superior powers of those that remain unimpaired [especially touch]’, detailing further the particular ‘undefinable power, almost resembling an instinct’ that enabled him to understand and move through environments in which he was situated.31 Indeed, this is the crux of why Holman travels – his narratives frequently describe the bodily anxiety that besets him if he cannot exercise and walk. He details how he always travels with cord in his pocket, which could be tied to a cart or person, to prevent him getting lost but enabling him to walk, rather than, say, be transported by carriage. In this, his engagement with place is not passive but active, embodied. Indeed, it becomes enabling in other ways, bestowing upon him a professional identity, including

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admittance into the Linnean and later Royal Society, and financial remuneration through sale of his books. His enjoyment and discrimination of different places turn on the sensation of different weather conditions on his skin, the exertion of his body as it negotiates the gradient of a landscape, the way in which built environments shape olfactory and auditory sensations (narrow streets, for example, are often unpleasantly accompanied by strong smells). He reiterated in 1825 that his ‘desire for locomotion’ was a response to his being deprived of the visible world, articulating how this had become for him ‘a new sense’, which, whilst not ‘easy to explain’, turned on the ‘numberless and interesting associations’ that were called forth and connected with ideas previously acquired relative to the countries, places and objects with which he was ‘really, or virtually, brought into contact’.32 The connection between sensory experience, association and ideas is important in Holman’s geographic strategy and suggests how, whilst outside of physical vision, his perception remained in part a visual process, with the translation of tactile and auditory sensations into mental images. Holman stresses that: Now, so as ideas are excited in the mind respecting the existence of external things, it matters not through what senses the impressions from which they are derived are transmitted; whether through the medium of sight, touch, hearing, or any other sense; and although the eye be the more generally appropriate one for this purpose, yet all the others admit of being put into requisition as auxiliaries to it, or, when vision is denied, as substitutes for it; and it is well-known what extensive powers they acquire under such circumstances.33 This statement seems informed by contemporary theories and debates exploring the nature of vision and perception. Indeed, Holman was likely to have been grounded in recent philosophical debates on the senses whilst a pupil of the medical school at Edinburgh University during the 1810s. In particular, Holman’s statement resonates with the tenets of Associationist philosophy, a dominant cognitive model until advancing physiological models from the midnineteenth century superseded it, as Nicholas Dames has recently outlined.34 As Alan Richardson explains, David Hartley, a key figure in Associationist psychology, had proposed in his treatise Observation on Man (1749) that cognition was the result of a material process of ‘vibrations’ in the brain and nerves that underpinned the workings of association. He argued that ‘motions’ from the external environment bombarded the senses, causing vibrations that run along the medullary substance of the nerves, triggering corresponding vibrations in the medullary substance of the brain, which, crucially, could persist in the brain as ‘dispositions’, particularly if reinforced directly (by repeated exposure to the sensory data), or indirectly (by association).35 Although Locke had warned that ideas can be lost from memory if not repeated, arguing that the ideas of colours to those who go blind ‘do quite wear out’,36 Hartley’s theory provided a material and physiological explanation for the persistence of those ideas to blind and visually impaired people. Language itself helped stimulate visual memory through indirect stimulation and association, for as ‘words pronounced call up visible Ideas,

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so visible Ideas and Objects call up the Ideas of Words, and the Actions by which they are pronounced.’37 Tellingly, Holman referred to his ‘active mind’ and noted that ‘it must be recollected that I have formerly enjoyed the power of vision.’38 Articulating his own sensory experience along Associationist lines, Holman suggests that the activity of travel stimulates his memory, and his vision. He details how he arrives at ‘an ideal knowledge of the places I visit’: Accompanied by an intelligent friend, or some other guide, I examine every place of interest,—touch what I can, and hear of all; and then combining the information thus gained with previously acquired knowledge of the subject, and some portion of imagination, a picture is produced, comprising, in my mind, a strong impression of reality . . . as if I had actually seen it.39 In his practice of synthesising different types of data, directly and indirectly acquired, Holman drew upon sensory theory to develop a strategy for an active, embodied way of both being in the world and knowing the world. In our conclusion to this section, we want to consider one example of how Holman used visual media to underscore his own haptic engagement with the world, as well as confirm his active role in shaping his own multi-sensory identity. The portrait shown in Figure 14.1 was engraved for Holman’s first travel memoir in 1822.40 The image establishes a similar play between sight and touch to that evident in Holman’s travel writing. Holman is depicted smartly attired and confidently poised, one hand gently caressing a globe and the other resting on his writing frame, via which he recorded by hand his experiences in ink print form for others to read back. Holman is not presented as visibly blind: apart from a subtle suggestion in his unfocused gaze, he wears no accoutrements of blindness, such as a dark band around the eyes. Indeed, he refused to wear such markers, cautious about eliciting pitying or protecting responses from those he encountered on his travels. The image contrasts a visual symbol of travel – the framed view of a ship at sea in the background – with Holman’s tactile interaction with the world, embodied in a hand that touches a globe. Ironically, however, the globe is blank, and so cannot be interpreted through sight: is Holman’s touch therefore more knowing? This underscores how the visual works not so much in terms of an exclusionary gaze in this portrait, but as co-operative. Indeed, as Holman drew upon the sight of others to supplement his touch and help disseminate his ideas, so the artist renders his identity. Moreover, as the visual anthropologist Elizabeth Edwards has compellingly argued of photographs, the experience of viewing these portraits in their original form is inherently haptic: they are bound within the book, a material object that is, of course, handled, mirroring Holman’s own grasping of writing frame and globe.41 We suggest that this portrait of James Holman can be interpreted as an enabling representation of blindness in which sitter and artist collaboratively produced an image that invoked other sensory experience and knowledge outside of vision, and which indeed ironically points to vision’s limits.

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Figure 14.1 James Holman, frontispiece to The Narrative of a Journey . . . Through France, Italy, Savoy, Switzerland, 1822. Engraved by R. Cooper after Fabrioni. Copyright British Library. This notion of an active, collaborative production of identity is, however, central to the enabling nature of Holman’s writing and portraiture. We turn now to the movement of geographic touch within institutional settings, to consider whether the incorporation of touch in pedagogical regimes for blind students could replicate such positive modes of knowing the world. We argue that these institutions functioned more as a disciplinary space, in which pupils’ tactile skills were shaped in somewhat constrained terms by medical and pedagogical authorities, not least by approaching touch through the experience of sight, limiting the efficacy of tactile materials. In conclusion, we will consider how visually impaired commentators towards the end of the nineteenth century pressed for greater control over the design of embossed maps, and advocated that tactile pedagogy should be determined by those stakeholders most invested in its methods – blind people themselves.

Touching Geographic Knowledge in the Institutional Space The types of objects that Holman was depicted with, writing aid and geographical representations, were frequently used in the pedagogical programmes of nineteenthcentury blind schools. Along with tactile models of the plant and animal kingdom and

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everyday objects of all sorts, they constituted a hands-on topography that visually impaired pupils engaged with on a daily basis. Yet the institutional context of these objects produced a very different kind of geographic knowledge to that experienced by Holman. Since most of these objects are preserved in museum collections and displays, they constitute a material counterpart to the things described in institute memoirs and depicted in historical pictures and portraits, constituting another kind of approach to the history of blindness. As Elizabeth Edwards, Chris Godsen and Ruth Phillips argue, museum collections present researchers with unique possibilities to combine perspectives from sensory studies with the field of material culture.42 In a similar vein, Katherine Ott draws our attention to the rich material diversity preserved in museum collections, objects that, in Ott’s words, ‘are polysemic and vibrate with those who animated them, across the decades’.43 While material objects have the power to evoke marginalised forms of social being, they are also entrenched in sensorial regimes that have defined their form and function. This is particularly pressing when it comes to pedagogic objects for blind people and their role as historical indicators. For, if Holman used visual form to express his haptic engagement with the world, the tactile objects we discuss in this section were embedded within a world that still privileged vision.44 Blindness evolved as a particular pedagogical space in the nineteenth century, a space that reflected the transition from a multi-sensory habitus to a visual regime. The question here was not, of course, whether or not people were allowed to touch but rather who decided what visually impaired pupils were supposed to touch in terms of materials and representations. Not surprisingly, the people responsible for the selection of tactile teaching aids were, for the most part, sighted pedagogues who conceived of tactile representations via visual forms, visual metaphors and visual thinking. As stated in a memoir from the Danish Institute for Blind and Visually Impaired Children from 1879, the role of the teacher was to ‘open the inner eye’ of the blind to exterior reality with the aid of models.45 Whilst far from being a homogeneous category, the models used to instruct blind pupils rested on the principle of substitution, tactile for optical. This was manifested both in the choice and the design of objects, and in the medical notion of sense analogy or sense compensation. Whether objects were obtained from extramural contexts or designed by the institute teachers, they often brought matters of size and proportion into play. Large things were scaled down into small models and small things enlarged into a size fitted for tactile exploration. However, if scale constitutes an important feature in the correspondence between things, it does not in itself convey significant tactile information such as texture, weight and density. Many of the objects used in the blind class also suggest that it was the eye and visual techniques like illustration, photography and optics that formed the primary design rule rather than the hands and the properties of touch. But as Michel Serres rightly points out in his essay on the five senses, ‘the eye has no weight to impose, it imprints nothing’: that is, the faculty of vision alone cannot be used as a yardstick for the other senses.46

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The substitution of touch for vision in the discourse of blindness gave rise to medico-scientific discussions that merged ideas from eighteenth-century philosophy with nineteenth-century theories of the body. The notion of a deputy sense, for instance, by means of which blind people compensated for their lack of sight, was frequently discussed in connection to medical theories and concepts.47 Newly emerging understandings of the nervous system from the infant discipline of neurology, which described its ramification of fine nerve threads, provided these theories with an empirical basis. One theory, for example, which resonates with James Holman’s earlier outline of his mode of perceiving, suggested the possibility of sensorial stimulus across the neural pathways: for instance, from the optical nerve to the tactile nerve. As a result, the question arose whether blind people, despite their inability to see, were able to sense visual phenomena in vicarious ways. Although physicians and pedagogues remained reluctant to accept the notion of a substitute touch that grasped visual attributes by dint of nervous transmission, physiological explanations left room for tentative interpretations that depicted the touch of blind people in quasi-scientific terms.48 No matter how speculative, these ideas helped set the context for how pedagogical objects were to be tactilely deployed by blind and visually impaired people. By the turn of the twentieth century, this had become a scientific study in its own right.49 Of the different objects that were utilised to convey a vivid sense of the world to blind and visually impaired people, tactile maps constituted a special category, since they pointed beyond the typical function of three-dimensional representation.50 Most of the blind-pedagogical objects referred to separate things – a model of an animal or of a local building in reduced scale – that could be discerned with one’s hands. Tactile maps, alternatively, underscored the complex relation between the symbolic representation of a specific territory and the bodily experience of actually moving around by oneself in a village, in a city or in the countryside. It is not difficult to imagine, however, that for the visually impaired reader inside a blind institute, maps stressed the border between the institute as a confined space within the city and the rest of society, which oriented itself mainly through vision. To be sure, when discussing blind-pedagogical objects, we imply an embodied use of the objects in question to a greater or lesser degree: that is to say that the objects were handled by sentient perceivers for whom the sense of touch was deeply embedded in the body’s multisensorial nexus and proprioceptive and kinaesthetic awareness of space. That said, some objects, like the ones employed in the geographical lesson, indicated a more complex relation between touch, embodied notion and tactile representation. The question of movement, for instance, had a special significance for the understanding of tactile maps, since the blind person was to relate the conventional signs that outlined a specific topography for the hands to explore to the physical act of traversing the denoted space. The idea that geography could be taught to visually impaired people by means of embossed maps can be traced back to the early days of blind education. Under the heading ‘Blind, instruction of the’, The Penny Cyclopædia of 1835 referred to the

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relief maps that the German teacher M. Weissembourg from Mannheim invented in the late eighteenth century.51 Relief maps were also made at blind institutes in Paris, Boston and Edinburgh in the early nineteenth century. These were basically low-cost artefacts that consisted of materials such as cardboard, wire, nails, cloth and pieces of wood. More advanced maps in embossed style were later produced by printers such as Bernard Dondorf in Frankfurt am Main. A series of Dondorf maps depicting the different continents are included in the pedagogical collections that the Copenhagen Institute for the Blind and the Partially Sighted left behind.52 On the box that contained the maps we can read that the Plastischer Schul-Atlas provided an ideal picture of the physical-geographic conditions of the earth cast in relief and printed in colour.53 An examination of the Dondorf maps clearly indicates that they were intended for sighted children rather than for blind ones; hence the raised structure simply filled an additional pedagogical function – to convey a vivid image of the geography lesson. At a conference in York in 1883, Thomas Armitage, founder of the British and Foreign Blind Association, criticised the use of tactile maps that had been produced by sighted people and argued for the value of maps that had been made by blind teachers like himself. Who, if not the blind themselves, were the best judges when it came to touch, Armitage asked, and asserted that, ‘if the maps are good, the reason is that they are constructed entirely by the sense of touch, and for the sense of touch.’54 Again, the reason for this unsatisfactory situation was identified as the inability of sighted people to really understand the needs of blind people. Misled by their eyesight, Armitage continued, inventors of embossed material and managers of institutions ‘cannot understand or enter into the real wants of the blind’.55 Armitage acknowledges here the conflict that shaped the production of knowledge for blind people, and which was given a very particular material form in these maps. Embossed maps for blind pupils shared in the general conception of maps in nineteenth-century culture as objects that emphasised the benefits of education while at the same time encouraging the desire for knowledge. Pupils were encouraged to use maps imaginatively: for example, an article on blindness and embossed maps from 1836 expressed how ‘every place the pupil puts his finger on becomes, as it were, alive to him.’56 To envision vast continents with one’s eyes or with one’s fingers was an equivalent mode of understanding geography. An important distinction between the use of maps in ordinary schools and in blind institutes, however, was that the latter governed the phenomenological realm of their pupils in a more corrective way. Arousing the curiosity of the pupils was just one part of the geography lesson of the blind institute. Another part provided instructions on how best to find one’s way both indoors and outdoors. For this purpose, local maps were used, providing basic depictions that charted the institute space, its immediate surroundings and the boundaries of an unknown beyond. Of course, all maps, whether embossed or not, mark the borders between the familiar and the unfamiliar. A crucial difference, none the less, is that embossed maps uphold the preconception that visually impaired people are incapable of moving around on their own, even in their own quarters. According

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to a report of the Perkins Institute in Boston from 1869, the ideal environment for blind pupils was one that provided monotonous and regular paths on which one could wander safely and comfortably.57 On closer consideration, the relation between general maps and local maps for visually impaired users accentuates the crucial difference between a touch that follows the contours of knowledge and a touch that, unlike the haptic sensibility that Holman valued, trained students to be passive and cautious in their movement.58

Conclusion As we have traced, the relationship between the senses and cognition was something that preoccupied the (most often sighted) pedagogues and directors associated with institutional education of young blind people, with tactile geographic tools both replicating the techniques of sighted tools, and contributing to a curtailment of the blind student’s haptic possibilities. This material was produced from limited assumptions about blind people’s abilities, rather than in consultation with them. The archive may be relatively silent in directly recording blind students’ experience of these maps, and the ways in which they related to their institutional lives. However, situating these objects within their contemporary sensory landscapes allows us to begin to evaluate the ways in which they disabled the people they were supposedly intended to enable. James Holman’s project of a haptic geography, enacted through an understanding of the body that valorised multi-sensory knowledge and experience, could not be replicated in the social structures of the institutional realm.

Further Reading Colin Barnes and Geoff Mercer (eds), Exploring Disability: A Sociological Introduction, 2nd edn (Cambridge: Polity, 2010). Patrick Devlieger, Frank Renders, Hubert Froyen and Kristel Wildies (eds), Blindness and the Multisensorial City (Antwerp: Coronet Books, 2006). Kevin Hetherington, ‘The Unsightly: Touching the Parthenon Frieze’, Theory, Culture and Society 19 (2002), pp. 187–205. David Howes and Constance Classen, Ways of Sensing: Understanding the Senses in Society (New York: Routledge, 2014). Georgina Kleege, ‘Blindness and Visual Culture: An Eye Witness Account’, in Lennard J. Davis (ed.), The Disability Studies Reader, 2nd edn (New York and Oxford: Routledge, 2006), pp. 391–8. Paul Rodaway, Sensuous Geographies: Body, Sense and Place (London: Routledge, 1994). Sharon L. Snyder and David T. Mitchell, Cultural Locations of Disability (Chicago: University of Chicago Press, 2006). Rosemarie Garland Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997). Heather Tilley (ed.), ‘The Victorian Tactile Imagination’, 19: Interdisciplinary Studies in the Long Nineteenth Century, no. 19 (2014) (accessed 15 July 2015).

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Notes 1. G. Thomas Couser, ‘What Disability Studies Has to Offer Medical Education’, Journal of Medical Humanities 32 (2011), pp. 21–30 (pp. 21–2). 2. Kumari Campbell, ‘Medical Education and Disability Studies’, Journal of Medical Humanities 30 (2009), pp. 221–35 (p. 224). 3. See, for example, Colin Barnes and Geoff Mercer (eds), Exploring Disability: A Sociological Introduction, 2nd edn (Cambridge: Polity, 2010); and Michael Oliver and Colin Barnes, The New Politics of Disablement, 2nd edn (Basingstoke: Palgrave, 2012). 4. Taking the UK Disabled People’s Council’s definition, an ‘impairment’ is a medically classified biophysiological condition. See Barnes and Mercer, Exploring Disability, pp. 11 and 14–42, for a fuller discussion of issues around terminology and competing models, and approaches towards disability. 5. Rosemarie Garland Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997), p. 6. 6. Ibid., p. 7. 7. Important recent studies that have emphasised the privileged status of the visual in nineteenth-century culture include: Nancy Armstrong, Fiction in the Age of Photography: The Legacy of British Realism (Cambridge, MA: Harvard University Press, 1999); Carol T. Christ and John O. Jordan, Victorian Literature and the Victorian Visual Imagination (Berkeley: University of California Press, 1995); Jonathan Crary, Techniques of the Observer: On Vision and Modernity in the Nineteenth Century (Cambridge, MA: Harvard University Press, 1990); and Kate Flint, The Victorians and the Visual Imagination (Cambridge: Cambridge University Press, 2001). 8. Flint, The Victorians and the Visual Imagination, p. 64. 9. See Alenka Zupancic, ‘Philosophers’ Blind Man’s Buff’, in Renata Salecl and Slavoj Žižek (eds), The Voice and Gaze as Love Objects (Durham, NC: Duke University Press, 1996), pp. 32–58. 10. Georgia Kleege, ‘Blindness and Visual Culture: An Eye Witness Account’, in Lennard J. Davis (ed.), The Disability Studies Reader, 2nd edn (New York and Oxford: Routledge, 2006), pp. 391–8 (pp. 391, 398). See also William Viney, ‘Getting the Measure of Twins’, in this volume, pp. 104–19. 11. Vanessa Warne, ‘ “So that the sense of touch may supply the want of sight”: Blind Reading and Nineteenth-Century Print Culture’, in Colette Colligan and Margaret Linley (eds), Media, Technology, and Literature in the Nineteenth Century: Image, Sound, Touch (Farnham: Ashgate, 2011), pp. 43–64. For a widespread survey of the range of interest in tactility, and in the workings of a nineteenth-century tactile culture, see the special issue, ‘The Victorian Tactile Imagination’, ed. by Heather Tilley, 19: Interdisciplinary Studies in the Long Nineteenth Century, no. 19 (2014) (accessed 15 July 2015). 12. Molyneux’s question was given potential medical proof in 1728 following the surgeon William Cheselden’s successful removal of cataracts from a boy born blind. 13. Denis Diderot, An Essay on Blindness, in a Letter to a Person of Distinction, 3rd edn (London: J. Barker, 1750). 14. Jeffrey Mehlman, Cataract: A Study in Diderot (Middletown, CT: Wesleyan University Press, 1979), p. 13. 15. Diderot, An Essay on Blindness, p. 33.

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16. Susan J. Lederman and Roberta L. Klatzky define haptic perception as based on ‘combined sensory inputs from the skin, muscles, tendons, joints and mucosae exposed to the environment’ that most commonly results from ‘active, purposive touch’ (‘Perception, Haptic’, in Encylopedia of Cognitive Science [Hoboken: Wiley, 2005] (accessed 3 November 2014). No pagination). 17. This point is emphasised in David Parisi’s recent discussion of ‘tactile modernity’ in nineteenth-century scientific discourse. He argues that the important experiments conducted by Ernest Heinrich Weber on the tactile sensitivity of the skin in the 1820s contributed to ‘a fervent interest in the psychophysiology of touch’, directly generating the research of those working in experimental psychology during the 1890s who coined the term ‘haptics’ (‘Tactile Modernity: On the Rationalization of Touch in the Nineteenth Century’, in Colligan and Linley (eds), Media, Technology and Literature, pp. 189–213 (p. 191)). 18. ‘Haptic, adj. (and n.)’, OED Online, (accessed 1 November 2014). 19. Alexander Bain, The Senses and the Intellect (London: John W. Parker & Son, 1855), p. 346. 20. For example, the physiologist William B. Carpenter described how blind people learned to diminish the size of embossed font they read, until, with sufficient practice, they can ‘read a type not much larger than that of an ordinary large-print Bible’ (Principles of General and Comparative Physiology, Intended as an Introduction to The study of Human Physiology, and as a Guide to the Philosophical Pursuit of Natural History, 5th edn [London: John Churchill, 1855], p. 690). 21. James Holman, The Narrative of a Journey, Undertaken in the Years 1819, 1820, & 1821, Through France, Italy, Savoy, Switzerland, . . . (London: F. C. & J. Rivington, 1822); Travels Through Russia, Siberia, Poland, Austria, Saxony, Prussia, Hanover . . . (London: George B. Whittaker, 1825); A Voyage Round the World . . ., 4 vols (London: Smith, Elder, & Co., 1834–5). 22. For more on Holman’s biography, see Jason Roberts, A Sense of the World: How a Blind Man Became History’s Greatest Traveller (London: Simon & Schuster, 2006). 23. Eitan Bar-Yosef, ‘The “Deaf Traveller,” the “Blind Traveller,” and Constructions of Disability in Nineteenth-Century Travel Writing’, Victorian Review 35.2 (2009), pp. 133–54 (pp. 134–5). 24. Holman, Travels Through Russia, p. v. 25. Morning Post, issue 19775 (25 April 1834), p. 6. 26. Holman, A Voyage Round the World, I, p. 272. 27. Ibid., p. vii. 28. See James Wilson’s entry on Holman in the third edition of Biography of the Blind (Birmingham: J. W. Showell, 1838), pp. 261–2. 29. Holman, Travels Through Russia, p. 36. 30. Paul Rodaway, Sensuous Geographies: Body, Sense and Place (London: Routledge, 1994), p. 44. 31. Holman, The Narrative of a Journey, p. viii. 32. Holman, Travels Through Russia, pp. vi–vii. 33. Holman, The Narrative of a Journey, p. 55. 34. Nicholas Dames, ‘Wave-Theories and Affective Physiologies: The Cognitive Strain in Victorian Novel Theories’, Victorian Studies 46 (2004), pp. 206–16 (p. 208). 35. The medullary substance is what is now called the white, or axonal matter, of the brain. As Alan Richardson points out, the developing disciplines of cognitive science and neuroscience were increasingly positing the mind as an active processor, rather than a passive register, of experience, thus departing from Locke’s model of mind as a tabula rasa (British

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36. 37.

38. 39. 40.

41.

42.

43.

44.

45. 46. 47.

48.

49.

heather tilley and jan eric olsén Romanticism and the Science of the Mind [Cambridge: Cambridge University Press, 2001], pp. 6–9). Locke, British Romanticism and the Science of the Mind, p. 149. David Hartley, Observations on Man, his Frame, his Duty, and his Expectations, 2 vols (London, 1749; reprinted by Scholars’ Facsimiles and Reprints in one vol: Gainseville, FL, 1966), I, p. 212. For a fuller discussion of the contexts to Hartley’s theory, see Jonathan Lamb, ‘Hartley and Wordsworth: Philosophical Language and Figures of the Sublime’, MLN 97 (1982), pp. 1064–85 (p. 1072). Holman, A Voyage Round the World, I, p. 273. Ibid., p. 56. Holman repeated this compositional format in at least two other portraits by different artists, suggesting his role in helping to direct his public image. See frontispiece to his 1825 book, which includes an engraved portrait by R. Cooper after Fabrioni; and a lithograph by Maxim Gauci, printed by Graf & Soret, published by Andrews & Co., from the early nineteenth century, a copy of which is held in the National Portrait Gallery (NPG D35925). See Elizabeth Edwards, Raw History: Photographs, Anthropology and Museums (Oxford: Berg, 2001) and ‘Thinking Photography Beyond the Visual?’, in J. J. Long, Andrea Noble and Edward Welch (eds), Photography: Theoretical Snapshots (Abingdon: Routledge, 2009), pp. 31–48. Elizabeth Edwards, Chris Gosden and Ruth Phillips, ‘Introduction’, in Edwards, Gosden and Phillips (eds), Sensible Objects: Colonialism, Museums and Material Culture (London: Bloomsbury Academic, 2006). Katherine Ott, ‘Collective Bodies. What Museums Do for Disability Studies’, in Richard Sandell, Jocelyn Dodd and Rosemarie Garland-Thomson (eds), Re-Presenting Disability: Activism and Agency in the Museum (London: Routledge, 2010), p. 271. The changing role of touch within the museum is, of course, a related issue. Most recently, Fiona Candlin has argued that even though museums increasingly were shaped into ocular regimes in the nineteenth century, the transition from a multisensory museum regime to a strictly visual one was not straightforward. Touch was not simply excluded from gallery spaces, argues Candlin, but rather became associated with different groups of people who were deemed either suitable or unsuitable to handle objects from the collections. See Candlin’s Art, Museums and Touch (Manchester: Manchester University Press, 2010), pp. 63 and 71. 20de Aarsberetning om Det Kongelige Blinde-Institut for skoleaaret 1878–79 (Afgiven af Johannes Moldenhawer, Institutets Forstander, Kjøbenhavn, 1879), p. 5. Michel Serres, The Five Senses. A Philosophy of Mingled Bodies (London: Continuum, 2008), p. 35. These discussions often took place at meetings and congresses. See, for example, Proceedings of the Tenth Biennial Meeting of the American Association of Instructors of the Blind (Brantford, Ontario: American Association of Instructors of the Blind, 1892), pp. 50-1. The notion of touch as a vicarious sense became the subject of much controversy in the latter half of the nineteenth century. See Jan Eric Olsén, ‘Vicariates of the Eye: Blindness, Sense Substitution, and Writing Devices in the Nineteenth Century’, Mosaic, special issue on blindness, 46.3 (2013), pp. 75–91. For instance, through the work of Theodor Heller. See Studien zur Blindenpsychologie (Leipzig: W. Engelmann, 1904), p. 136.

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50. In her study on the history of pictorial representations for blind people, Yvonne Eriksson devotes a chapter to the question of tactile maps, which she mainly approaches from the perspective of visual culture. See Yvonne Eriksson, Tactile Pictures: Pictorial Representations for the Blind 1784–1940 (Gothenburg: Gothenberg Studies in Art and Architecture 4, 1998). 51. The Penny Cyclopædia of the Society for the Diffusion of Useful Knowledge 5 (London: Charles Knight, 1835), pp. 515–28 (p. 519). 52. These collections are currently stored at the Medical Museion, University of Copenhagen. 53. This item is part of the Medical Museion collection. 54. Yorkshire School for the Blind: Report of the Jubilee Celebration and of the Conference of Managers & Teachers (York: At the ‘Daily Herald’ Office, 1883), p. 99. 55. Thomas Armitage, The Education and Employment of the Blind: What it Has Been, Is, and Ought to Be (London: Published for the British & Foreign Blind Association by Robert Hardwicke, 1871), pp. 12–13; p. 22. 56. The Penny Magazine of the Society for the Diffusion of Useful Knowledge (1 October 1836), p. 388. 57. Thirty-Seventh Annual Report of the Trustees of the Perkins Institution and Massachusetts Asylum for the Blind (Boston: Wright & Potter, 1869), p. 27. 58. Whilst Holman was perhaps the most famous blind person to detail his ability to navigate environments independently of sight, he was not unique; for example, James Wilson, author of the first compendium of blind biographies in 1821 and himself blind from infancy, also described his skills as a messenger that required extensive hands-on knowledge of the local countryside and surrounding areas in his memoir. James Wilson, The Life of James Wilson, Blind from His Infancy, Author of Original Poems (Limerick: R. P. Canter, 1825), pp. 18–19.

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15 THE ANATOMY OF THE RENAISSANCE VOICE Jennifer Richards and Richard Wistreich

Introduction ‘

issection might be thought of as a self-explanatory term.’ So begins Jonathan Sawday’s The Body Emblazoned: Dissection and the Human Body in Renaissance Culture (1995), one of the earliest cultural histories to contribute to the burgeoning field of medical humanities in the 1990s. ‘In its medical sense’, he explains, ‘a dissection suggests the methodical division of an animal body for the purposes of “critical examination”.’ But the term can be used in a ‘metaphoric sense’ too, and when it is we are led ‘to an historical field rich in cognate meanings’ in a period when a ‘ “science” of the body had not yet emerged’. These rich meanings are the focus of his study, which aims to recover the ‘violent, darker side of dissection and anatomization’ before its meaning became fixed as ‘a seemingly discrete way of ordering the observation of the natural world’.1 This darker side includes the partitioning of knowledge, surveillance of the body, eroticism and a deep-rooted fear of interiority. Rereading Sawday’s pioneering study twenty years on, we have been struck by how much his conception of dissection in both its medical and its metaphoric senses presupposes a way of knowing that is also a way of seeing the world: cold, analytical, voyeuristic and also side-long. His opening chapter, ‘The Autoptic Vision’, plays with this association in suggestive ways that helps to develop his argument. ‘Autopsy’, he reminds us, connotes not simply the ‘ “Inspection of a dead body” ’, but also ‘ “Seeing with one’s own eyes, eye-witnessing” ’.2 However, what we see is never our own body’s interior; it is always somebody else’s. Our interior, he argues, is like the Medusa, whose gaze is petrifying, and like mythical Perseus we must approach it through its reflection or representation, never directly.3 We are summarising the opening arguments of The Body Emblazoned. It is not our intention to challenge Sawday. We do not doubt that there was a darker side to dissection. How could there not have been when the cadavers cut up and peered into were obtained in nefarious ways? Cadavers were the bodies of executed criminals or, according to European folklore, those of the recently buried stolen by medical students. The point is that permission to dissect was never volunteered. None the less, we would also argue that anatomy includes other ways of knowing the body in the

D

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Renaissance that were more holistic than divisive, and which allowed for new perspectives on sensual experience. We would also propose that this conception of anatomy belongs as much to the humanities as it does to medicine. To reveal this, we propose a different approach to Sawday’s, one that is focused on anatomy as primarily an oral and aural rather than a visual experience. This is prompted by our research on the vocalisation of text in the period 1500–1800, including the reading aloud of books of anatomy,4 and it has been informed by Cynthia Klestinec’s historical study of the anatomy theatres of Renaissance Italy. Klestinec’s explanation of the architecture of the second new anatomical theatre in Padua, completed in 1595, reveals a space that ‘cultivated a nonvisual, predominantly aural or auditory experience of anatomy’. Unlike its predecessors, this theatre was illuminated not by natural light but by ‘torches and candles’; its eight windows remained blocked up until the mid-nineteenth century. Moreover, its seating was steeply raked so that ‘the spectators in the uppermost gallery would have been twenty-five feet from the cadaver’, a position from which it was impossible to ‘scrutiniz[e] the structures and shapes of anatomical particulars’. If we add to this murky scene the fact that the cadavers had already been prepared in an antechamber, and that the theatre was used for their exhibition only, then we can begin to ‘see’ more clearly how much the anatomist would have ‘relied on verbal skill’ and the audience on ‘auditory apprehension’.5 This was not a spectacle such as Sawday imagines but a dramatic auditory experience. It is not at all surprising, then, that the annual anatomy demonstration in this theatre was accompanied by music.6 In this chapter, we look again at both the oral and aural dimensions of the anatomical experience in the Renaissance. The voice was always central to anatomy even when the spectacle of the dissected body was emphasised. The frontispiece to Andreas Vesalius’s magnificent De Humani Corporis Fabrica (1543), a collection of spectacular graphic images of parts of the body drawn from life, superior in quality and detail to any before published, is a noisy scene: a heaving mass of onlookers presses forwards towards the partly dissected cadaver of a woman in the centre, craning to hear what Vesalius is saying as well as see what he is showing (Figure 15.1), and talking among themselves.7 Similarly, Thomas Raynalde’s The Womans Booke, the first vernacular treatise to reproduce Vesalius’ illustrations of the dissected female body, imagined its own hearing.8 Yet, the voice was a subject of anatomy too, and anatomists from the second half of the sixteenth century did more than expose the laryngeal tract. How does the philosophical anatomy of the voice in the late Renaissance, we ask, help to make visible again, and heard, a faculty so absent from our critical thinking? And what different ways of knowing might an approach that is observant of and articulated through all the senses, voicing and listening as well as seeing and touching, enable? This chapter explores the voice in Renaissance anatomy in two ways. Firstly, we explore the tradition of anatomy inaugurated by Girolamo Fabricio (Fabricius), appointed to the chair of anatomy and surgery in Padua in 1565, focusing on the work of his brilliant student, Giulio Casserio (Casserius). This gave medical students different ways of experiencing the body’s interior, allowing for philosophical as well as

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Figure 15.1 Andreas Vesalius, De Humani Corporis Fabrica Libri Septem, 1543. Source: Wellcome Library, London (EPB 6560/D).

physiological speculation on the nature and function of ‘voice’. Secondly, we explore the importance of philosophical speculation on voice and hearing to the vast anatomical work of one English physician, Helkiah Crooke’s Mikrokosmographia (1615, reprinted in 1616 and 1618, with a second edition appearing in 1631). What matters most about this tradition, we propose, is its commitment to recovering the interrelationship between the mind and the body, between thinking and the senses, in short, with what might be described as ‘embodied thinking’. We are not alone in this volume in perceiving a need to destabilise the hierarchy that accords most attention to vision over the other senses, or in understanding how this changes significantly what we think we know. Corinne Saunders proposes that the representation of voice-hearing and visionary experience in medieval literary texts gives us a different way of thinking about them ‘as aspects of lived experience’ rather than ‘as symptoms of psychosis’; Cynthia Klestinec invites us to think about how the touch of the early modern barber–surgeon defined a way of knowing that distinguished this professional group from other practitioners – physicians and anatomists – and how the social economy of trust on which this is predicated might provide a historical context for thinking through problems of patient adherence today. Heather Tilley and Jan Eric Olsén consider how the experience of James Holman, a nineteenth-century traveller with visual disabilities, challenged the idea

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that ‘the visual was the privileged mode of accessing information about the world’, while acknowledging that within institutions the tactile exploration and movement of the visually impaired was being limited.9 It goes without saying that all of these essays are also engaging with the medical and literary writing of the past. This is no accident and, indeed, it provides us with an opportunity to explain why we think a historical perspective is essential to critical medical humanities. Quite simply, the cultural–historical inquiry represented in these essays enables us to ‘see’ how sight-dominated our way of thinking has become, and to recover the critical value of other ways of sensing our world; touch, smell and hearing are forms of comprehending too.10 The sense we focus on in this chapter is different yet again, and it presents us with a unique set of problems in part because of its invisibility: the voice.11 We describe it as a ‘sense’ advisedly, knowing we can feel it but not see it, and accepting its contentious inclusion alongside the five senses in the Renaissance. The question about whether the ‘voice’ is actually a sixth sense is played out brilliantly in Thomas Tomkis’s university play Lingua (1607), an allegorical contention between the five senses and the voice (Lingua). The answer in the end is a resounding ‘no’. The play begins with Auditus firmly reminding Lingua that there are only five senses, and that ‘she’ – ‘an idle prating Dame’ – is not one of them. The rejection inspires her revenge, and she draws the five senses, Auditus, Visus, Tactus, Olfactus and Gustus, into contention by placing a coronet in full view for them to fight over, a ruse for which these ‘hot-spur senses’ fall.12 Only the winner of this struggle, finally, is not Lingua. Indeed, she is exposed as a presumptuous, talkative woman who needs to be silenced. Her punishment is to be locked up by ‘Common Sense’ in a ‘close prison’ in Gustus’s house (i.e. the mouth), while the crown over which the senses fight is awarded – no surprise here – to Visus.13 But if this play tells the story of the victory of vision over the other senses and, by analogy, of the necessary silencing of an idle, prating dame, then the medical–philosophical tradition we explore in this chapter offers us a different way to think through and with the voice. The voice cannot be seen, though it can be physically located, then just as now. More interesting to us, though, is the recognition that the voice is more than a physical phenonemenon: its very insubstantiality leads these anatomists to reflect on its cultural, social and intellectual import. Finally, the centrality of the voice to understanding can be glimpsed in the language that is used, say, by Crooke, to express sensual knowledge. It is these aspects of the voice, perceivable at this historical distance only in the metaphors of the text, that are a subject of investigation proper to the humanities, but we hope it will also place centre-stage the real voice that these Renaissance anatomists sought to grasp in all its human complexity, and in so doing, give us a new ‘sensible’ way to describe how we think.

Anatomising the Voice There is an obvious problem that we need to acknowledge right from the start of this chapter: we cannot recover the Renaissance voice in any straightforward way.

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The sixteenth-century French philosopher, Pierre de la Primaudaye, recognises this fundamental truism when he notes that the voice: is invisible to the eyes, so it hath no body wherby the hands may take holde of it, but is insensible to all the senses, except the hearing; which neverthelesse cannot lay hold of it or keepe it fast, as it were with griping hands, but entring in of it selfe, it is so long detained there whilest the sound reboundeth in the eares, and then vanisheth away suddenly.14 The impossibility of seeing and grasping the voice meant that it could not be fully anatomised in our sense. Helkiah Crooke, the compiler of the best-known English anatomy book in the seventeenth century, did not quite know what to do with ‘voice’. It is not that he could not locate it. As he explains, ‘the voyce is an action of the Larinx, and that is the instrument of the voyce, and that the glottis or whistle is the first and immediate cause of the voyce.’15 We can see the voice in action externally: for example, ‘when wee swallow or rayse our voyce very high or utter it very base, the Larinx is elevated as any man can see with his eyes. Some call it the knot of the Throate.’16 But more precision than this was not possible. The ‘matter’ of the voice is ‘breath’, Crooke explains.17 However, to make sound one needs the ‘percussion of one body against another in some other’. The voice may be airy but it comes from a hard place: ‘the Larinx or throtle’ is ‘the shop or worke-house wherein the percussion is made’. It needs ‘Gristles’, the ‘hard bodyes, broade, smooth, polished and concavous or hollow, upon which the ayre may easily be broken, constringed and compressed and therwithall resound’.18 And then, perhaps acknowledging the limits of physical description, he turns to medico-philosophy: ‘Galen expresseth the use of the Voice in these wordes, that it is the Messenger of the Thought of the mind, and therefore worthily is accounted the principall of all the actions of the Soule.’19 In our own time, this problem of ‘invisibility’ has been largely addressed. Since the invention of the laryngoscope in the mid-nineteenth century we have been able to see the vocal cords and so anatomise them and also protect the voice (whether as a therapist, a linguist or a throat specialist). Moreover, this is now common knowledge. One does not need to be a specialist to access MedlinePlus: Voice is a sound made by air passing from your lungs through your larynx, or voice box. In your larynx are your vocal cords, two bands of muscle that vibrate to make sound. . . . Many things we do can injure our vocal cords. Talking too much, screaming, constantly clearing your throat, or smoking can make you hoarse. They can also lead to problems such as nodules, polyps, and sores on your vocal cords. Other causes of voice disorders include infections, upward movement of stomach acids into the throat, growths due to a virus, cancer, and diseases that paralyze the vocal cords.20 Yet, with advances in scientific ways of ‘seeing’, something is perhaps also lost. It is the early description of the physical experience of the invisible, ephemeral

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voice – the gristly rings of the trachea, the idea of the air beating against the impediment of the larynx, almost like a bird – that seems so distinctive and compelling. This is the physical process by which it was thought we unfold our thoughts and express our soul. None of this is quite caught in MedlinePlus’s one-line concession to the personal and social function of voice: ‘For most of us, our voices play in who we are and what we do, and how we communicate. Like fingerprints, each person’s voice is unique.’21 Yet, oddly, what would be unsatisfactory now to a hypothetical medical scientist as a way of anatomising and understanding the voice is intuitively close to how we describe our experience of this instrument in the humanities, at least when we notice it. The title of the opening chapter of Steven Connor’s cultural history of ventriloquism, Dumbstruck, may emphasise voice’s ephemerality: ‘What I say goes.’ Yet this fleeting, insubstantial ‘thing’, Connor acknowledges, begins in the body: ‘My voice comes from me first of all in a bodily sense. It is produced by means of my vocal apparatus – breath, larynx, teeth, tongue, palate, and lips.’22 Meanwhile, Verlyn Klinkenborg observes, in the New York Times in 2009, that reading aloud ‘recaptures the physicality of words’. To read with your lungs and diaphragm, with your tongue and lips is very different than reading with your eyes alone. The language becomes a part of the body [. . .]. The words are not mere words. They are the breath and mind, perhaps even the soul, of the person who is reading.23 Voice is insubstantial but it comes from a hard, physical place. It is airy, and once outside of us it dissipates, but it also gives expression to the permanent part of us, our ‘soul’. Does this paradoxical way of thinking about the voice – grasping and not grasping it, feeling but never seeing it – count as ‘anatomy’ too? And if it does, how might we understand differently not just the body but also how we think? None of this is to dispute that anatomy is a topic that belongs primarily in medical faculties, as the definition offered first in The Oxford English Dictionary (OED) makes clear: anatomy is the ‘artificial separation of the different parts of a human body or animal (or more generally of any organized body), in order to discover their position, structure, and economy’.24 Yet, as Sawday recognised, anatomy also has rich cognate meanings. It also has a rich and complex history, attention to which will help us to recover a tradition of anatomy defined as much as ‘mental acuity’ expressed through voice as physical observation.25 To be sure, the emphasis on seeing and touching that is so important to modern anatomy matters in the Renaissance. In the early sixteenth century the teaching of anatomy underwent a significant shift. The traditional medieval demonstration placed centre-stage the ‘reading and explication of a text alongside the body’. This was replaced in the Renaissance by a new emphasis on observation, which is represented brilliantly by Vesalius’ anatomical practice, and also caught in his landmark De Humani Corporis Fabrica (1543). Vesalius begins this work ‘by criticizing the format of the public anatomy demonstration’. He ‘ridiculed the anatomist for “croaking [occinentibus]” out the lecture from the heights of his chair and drew

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attention to his “haughty manner of speaking [linguarum imperitis]” ’.26 In addition, records of his anatomical practice make clear his emphasis on showing and touching.27 Vesalius’ anatomical emphasis on observation inevitably produced new insights. If we take as an example his anatomy of the vocal organs – the subject we are most interested in – then we can see how his approach made possible the correction of received doctrine; as such, it was a ground-breaking challenge to conventional anatomy teaching. Vesalius broke the taboo of questioning the Classical model that had held throughout the Middle Ages, dramatically revising Galen’s anatomical model of the human larynx; he famously pointed out that Galen’s faulty anatomy had been based on dissections of pigs and not humans.28 Yet, for all his close scrutiny of the larynx, Vesalius arguably neglects what matters most about the voice and which the ancient authorities he had been so keen to improve on did register. De Anima (c. 350 bce), attributed to Aristotle, declares that voice is ‘a particular sound made by something with a soul’, adding that ‘nothing which does not have a soul has a voice.’ The voice is produced by ‘the striking of the inbreathed air upon what is called the windpipe’, although, he adds, it is particular only to animals that have ‘imagination’ since voice is ‘a particular sound which has meaning’.29 None the less, this is a broadly mechanical explanation of the voice: imagination is needed ‘because the animal has to make a kind of movement in order to make the relevant sound’.30 It was Galen, however, in a now-lost work on the voice, who first articulated a mechanical and physiological model for the vocal apparatus and the breath system that drives it, and which encompasses voluntary thought. This view continued to hold sway, more or less unchallenged in its principal details, until well into the nineteenth century. The implications for vocalisation of Galen’s most important discovery – that the nervous system is controlled by the brain and that actions of such things as the emission of breath can be controlled by the mind – were that ‘voice is not produced by a simple expiration,’ but that it is rather a special ‘emission of breath’ that is ‘caused by the muscles of the thorax’.31 The importance of this development in anatomical understanding was that it established that voice, and thus vocal utterance, is subject not only to immutable physical laws, but also to the reasoning mind. Galen’s model opens up the potential for understanding the voice as symptom of the inner life of the mind and consequently a medium for the diagnosis of both mental and physical disorders. We see this potential put into practice in popular, Galenic vernacular regimens in the sixteenth century like Thomas Elyot’s Castel of Helthe (1539). Among the fairly long list of symptoms Elyot conventionally gives for the choleric constitution and state of mind, we find leanness, costiveness and a ‘Voyce sharpe’.32 To recover and improve on this legacy of ancient medicine, moving beyond Vesalius, a new style of anatomy was needed. It was half a century after Vesalius that Fabricius became the first to set out in print a fully integrated vision of the anatomical, physiological and signifying functions of the voice in a series of books published

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between 1600 and 1603 (his earliest publications), later issued together as Opera Physica Anatomica (1625).33 This is the beginning of a different Renaissance anatomical tradition. As Klestinec puts it, while his predecessor at the University of Padua, Gabriele Falloppio, cut and showed bodies, Fabricius ‘talked’.34 His demonstrations, she explains, covered historia, that is, ‘dissection and the description of structure’, but also actio, function, and utilitas, use. In this way, he placed less emphasis on physical examination and more on a ‘philosophically complete account of anatomy’.35 He also focused on parts of the body rather than the whole body, and this approach favoured sustained attention to the value as well as the physical origins of the voice. Fabricius has been described as ‘the originator of all tentative scientific explanations of the voice in the seventeenth century’, primarily because of his application of observation to the explication of the classically derived and religiously inflected notion of the voice’s signifying role as ‘messenger of the soul’.36 He picks up on Aristotle’s ascription of ‘voice’ to all higher creatures, describing a continuum of articulated sound running from animals to humans; he understands the difference between animal and human ‘speech’ only as one of degree or utility, for all vocal expression is a means ‘by which the interior gives itself to interpretation’. Fabricius saw his opening of the body on the dissection table not only as an anatomisation of the organs, but also as ‘an enquiry into the expression (manifestatio) and communication (communicatio) of the interior’, the ultimate goal of which is to reveal ‘that which is not dissectable – the soul and also (what interests us here), the voice’.37 To understand the significance of this new way of anatomising the body for the study of the voice, however, we need to turn to Fabricius’ most illustrious pupil, the physician and anatomist, Casserius. The publication of his masterwork, De Vocis Auditusque Organis Historia Anatomica (Anatomical History of the Organs of Voice and Hearing), coincided with the first of his teacher’s major books on the subject, De Visione, Voce, Auditu (Of Sight, Voice and Hearing), both issued in 1600–1. Casserius’ work is bolder in ambition and scope than that of his teacher; it embraces wholeheartedly the humanist ideal of both embedding knowledge of the world within the broad context of Classical learning and harnessing this knowledge to create a better society in the present. Casserius’ sumptuous folio volume is an extraordinarily up-to-date compendium of the anatomy of the ear and the larynx, complete with a series of copperplate engravings of dissections of breath-taking accuracy. The work is divided into two volumes, treating hearing and the voice respectively. Unlike Fabricius, Casserius included illustrations drawn directly from anatomical dissections of human bodies. Volume II (‘Of the Voice’) offered detailed anatomisation of the parts of human vocal organs (as well as those of many animals, including frog, rat, cat, dog, sheep, pig, cow and horse) and also the first depiction of a human laryngotomy (Figure 15.2). Significantly, it is also an encyclopaedic panegyric to the voice, covering a wide range of topoi. The volume is further divided into three books; Book I covers the anatomy of the vocal organs (De Fabrica) in twenty illustrated chapters. Before

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Figure 15.2 Julius Casserius, De Vocis Auditusque Organis Historia Anatomica, 1600–1, p. 122. © British Library Board (544.l.8).

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proceeding to his dissection of the organs of speech, Casserius takes time in his Introduction to pay tribute to his philosophical mentors with a statement that emphasises the manifold attributes of voice, and its unique function as an indicator of interiority: Is it not the case that Aristotle who is easily the foremost of all philosophers, seems to place before our eyes in a marvelous fashion the excellence, utility and necessity of voice? that, along with Galen, the keenest of investigators into nature’s secrets, he announced that speech is the interpreter of our reasoning and intellect, the unfolder of all our conceptual thoughts, and, in like manner, the active component of our soul?38 It is this wider exploration of the nature of voice, and Casserius’ mixing of modern observation-based dissection on the one hand with wide reference to Classical medical and philosophical authorities on the other, which inspired the extraordinary expanse of the subject matter of the central second book on the functions of the voice (De Actione). In twenty-six chapters, Casserius ranges across topics including the nature of sound and the four elements, the nature of animal voices and of phonation, language and oratory; an entire chapter comparing the similarities and differences between the voice and various musical instruments; and a further chapter focusing particularly on the similarities between the vocal organ and church organs, encompassing a range of Classical and modern references to music theory, including mention of Casserius’ contemporaries, demonstrating that instrumental music is a metaphor and living analogy of the larynx. He covers children’s voices, puberty and castration; different vocal types and their significances (showing his knowledge of Classical physiognomy); and concludes with chapters on damaged or malfunctioning voices. The final book (De Usibus) extends his anatomical discussion in nine final chapters first to the practical functions of the various components of the laryngeal tract, and then to the uses of the voice. It is the foundation of the art of government, ruling over and administering human affairs; it commands, issues laws, declares wars. It also has curative effects, and in the hands of the gods and of Christ, it has miraculous powers: Christ ‘gives voice to the dumb, hearing to the deaf, health to the sick, life to the dead’. In summary, Casserius concludes: ‘with the exception of the soul, nothing is more sovereign, admirable or divine than the voice.’39 We are summarising the contents of Casserius’ treatise to make clear the breadth of his approach and how this affects his conception of anatomy. In the Preface he tells us that anatomy has two methods: the first ‘unfolds the body’s machinery with great accuracy and produces so detailed an acquaintance with even the smallest parts’. This is called the ‘Anatomical Method’, and it is represented in the painstaking detail of the images he includes; it coincides too with our first OED definition. The second method is described as ‘theoretical and mental’. This method unfolds the value and significance of the vocal organs (and the other organs of the senses) ‘by means of mental acuity alone’.40 Why expand anatomy in this way for these organs? One reason has already been suggested: the scope of Casserius’ understanding of voice. It is a physical attribute,

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but its function and use are also spiritual, cultural, social and educational, and thus it cannot be straightforwardly observed. Casserius expands on the dictum that voice is ‘a kind of sound characteristic of what has soul in it’ by acknowledging that this physical attribute expresses our ‘mental acuity’. The ‘intellect’, he explains, is both ‘immaterial and immortal’ and also ‘closely connected to our mortal, solid and earthly body’ so that ‘without the aid of the senses it could not attain to thought or knowledge’. Two of our senses, he recognises, ‘are especially suitable for gaining knowledge: the eyes and the ears’. The ‘eyes’, he explains, ‘have been established by nature herself to investigate objects close at hand; the ears, to hear of these objects when they are reported by somebody else.’ There is one faculty, though, which is the ‘instrument responsible for sharing and communicating the ideas of the mind’.41 This is the voice. De Vocis Auditusque Organis Historia Anatomica does not just describe the voice in the fullest way possible, starting with its physiological origins and encompassing its social and cultural functions and uses. It also represents a complete way of knowing and understanding that is fully embodied in the book itself. We ‘see’ the vocal organs illustrated. We are invited to mimic the anatomist’s touch too. The book is a physical object that is meant to be held in the hand even as it invites us to observe the dissected organs. Indeed, Casserius insists that his book should be ‘embraced, at they say, with both arms and throughly thumbed through’ and never ‘laid aside’, so important is its subject.42 However, we are also invited to listen and debate. The text resonates with Casserius’ speaking voice: ‘I shall speak, then, in a philosophical manner with bare and simple words’; ‘Speech, finally (and let me here in one “speech” sum up all my praises of speech)’; ‘I deem it without profit to waste the reader’s time in further talk.’43 In addition, the genres he imitates are the anatomical lecture and the rhetorical encomium, recalling the oral context of medical education at the University of Padua, where students were required to read, digest and discuss the works of the learned tradition as well as attend lectures. Thus, Girolamo Mercuriale explained to his students, ‘you should not be content to have read something once or twice and to have perceived it, but you should turn your mind to it time and time again, and consult your friends and teachers, examine, and debate.’44 None of this should surprise us. The value of hearing a book, after all, is that ‘wee have opportunity to demaund a reason of some doubts from him which speaketh to us; and thence we receive more profit then by bare reading, from which profit a certaine delight doth arise’; ‘Bookes cannot digresse from their discourse for the better explication of a thing, as those may which teach by their voyce.’45 These last thoughts belong not to Casserius, however, but one of his readers, Helkiah Crooke; it is to him that we now turn to explore the kind of sensory knowing that the lively anatomy of the voice enabled.

The Voice and Embodied Thinking: Helkiah Crooke Helkiah Crooke, the English physician who compiled Mikrokosmographia (1615), we suggested at the start of this chapter, does not seem to know what to do with ‘voice’. Although the laryngeal tract receives detailed attention in this work, the voice

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is overlooked in Book VIII, where the senses are examined. Indeed, the title of this book suggests that Crooke is unsure where to place voice: ‘Of the Senses and their Instruments, and also of the voyce’. This is despite the fact that Crooke has read and incorporated the work of Casserius (and others) on the senses into this Mikrokosmographia, as he outlines in the Preface: ‘I have interposed a Booke of the Senses, collected out of Bauhine, Laurentius, and Julius Casserius Plancentinus, who wrote very accurately of that subject, many of whose disputations I have also added.’46 Yet, the unseen voice is central to this anatomy in other ways, and this is inspired by the philosophical turn in Paduan anatomy. Indeed, Crooke imagines that he is communicating knowledge vocally as well as by hand, and this shapes how he understands the reception of his anatomical work; the lecture theatre with its questioning auditors is never far away. One learns about the body, he explains at the start of this work, in several ways: by the inspection of dead bodies; ‘viva voce’, that is, ‘by the living voyce of the Teacher’; or ‘by writing’.47 The importance of the living voice of the teacher alongside dissection, moreover, is represented in the Preface to this work, when Crooke addresses the ‘Barber–Chyrurgeons’, the ‘Citizens of the Physitions Commonwealth’.48 Crooke imagines he is speaking to a group of men who are used to hearing the scripted word. He commends the practice, instituted by the College of Physicians, whereby a doctor of physic reads anatomy lectures to the surgeons ‘twice a weeke, partly in Latine, and partly also in English’, saying that he too had profited from the readings of the current incumbent of this post. He also notes that the surgeons have ‘a laudable custome to procure a Doctor of Physick to reade unto [them], and to provide that his Lectures be duly attended by those of [their] society’; and they ‘have Anatomies both private for [their] profiting & publick for the honour & reputation of [their] Company read in [their] Mothertongue’. Crooke explains that it is precedents such as these, along with the attendance of so many ‘worthy Auditors’, that led him to compile this book.49 This Preface is included in the second edition of 1631, which also has a new frontispiece making clear the work’s interest in oral exchange; Crooke commissioned the Flemish artist Martin Droeshout to draw this (Figure 15.3). The flayed man and the partially dissected woman, modestly concealing her sex organs, which dominate the frontispiece of the 1615 edition and about which so much has been written, remain but only in the side panels.50 It is the bottom panel of this new frontispiece that completes the visual representation of the work’s contents. We might compare this scene of civil conversation with the crush of Vesalius’ scene of anatomy (Fig. 15.1). The emphasis here is on talking not showing. One man, in shadow behind the table, points to a body part on the table at the centre, the brain; however, our eye is also drawn to the seated figure in front of the table, with his back to us, who is explicating, and the figures to his left, whose hand gestures indicate they are interlocutors in this medico-philosophical exchange.51 We need to keep this lively context in mind as we try to make sense of the huge work and its unusual structure. Each of the work’s thirteen books, covering topics such as ‘Of the natural parts belonging to Generation’, ‘of all the Joynts’ and ‘of

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Figure 15.3 Title page to Helkiah Crooke, Mikrokosmographia, London, 1631. Source: Wellcome Library, London (EPB 1686/D). the Bones’, is divided into two parts: firstly, we have a ‘History’, in which the structure of the body parts is described and illustrated; then we have the ‘Controversies’, in which questions are posed, objections listed and alternative, often contradictory, viewpoints recorded.52 Book VIII, ‘Of the Senses and their Instruments, as also of the Voyce’, is no different. The Book provides detailed description of the facial muscles, of the parts of the eye, ear and nose and also of the mouth: the ‘palat and uvula’, the tongue, the larynx, the glottis and epiglottis. We end with an apparent afterthought: the short chapter, ‘Of the sound of the voyce’, the main points of which we have already noted above. In the Controversies attached to this book, each of the five senses is treated to physiological and philosophical speculation, and different theories are given, although a correct view is never insisted on. There is no separate discussion of the voice. Yet the voice is here outside the text. What is interesting from our point of view is that the structure of the Controversies, with their questions, opinions and objections, recalls the oral context of the lecture theatre (and the civil conversation of the barber–surgeons depicted in the frontispiece). One of the key topics explored in the Controversies, for example, is the question of which is the dominant sense. ‘Sight’ heads the discussion. ‘The first of the Senses is the Eye the most precious part of the body’; ‘Next followeth the Eare, the Instrument whereby the Soule discerneth of all manner of sounds and voyces’.53 But this order will be tested against the views of physicians and philosophers. Indeed, even as we assume that ‘sight’ has the edge,

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a different perspective is offered, foregrounding ‘hearing’. We encounter this new perspective discreetly through the reception statements used in the controversies: ‘Let us now lend our Eares unto the Fautours of the other Sect, the Prince of which Company and opinion is Aristotle in his second Booke De Anima.’54 We also encounter it explicitly under the topic of ‘hearing’. ‘[T]hose things which be heard’, Crooke cites Scaliger as saying, ‘take a deeper impression in our minds, which is made by the appulsion or arrivall of a reall voyce.’ In contrast, ‘those things which are seene are always intentionally imprinted, and therefore the Act of Seeing is sooner ended and passeth more lightly by the Sense then the Act of Hearing.’55 Moreover, it is ‘voice’ – communication, discussion and debate – that defines the imagined reception of this work and, in the end, it also informs Crooke’s conception of the relationship between the senses and understanding. Crooke accepts the view that the intellect is embodied, that all knowledge is gained through the physical body. We know by seeing, touching, tasting, smelling, hearing. And we express our knowledge physically too. The ‘knowledge of the soule’, he argues, ‘cannot bee made manifest but onely by her operations, which also seeing she doth not performe without the helpe of corporall organs, there is a necessity imposed, that we also understand the exact composition of the body.’56 The argument is made again in the excerpt below. This time, however, we would ask you to take special notice of the metaphor that Crooke uses to explain the communication between the external senses – sight, hearing, taste, smell, touch – and ‘the internall Sence’ or understanding. He cannot think outside the oral educational structures of his day: a tribunal pronouncing true judgement or a discourse ventilating a conceit to and fro: amongst all the offices of the Soule, this facultie of sensation seemeth to challenge the chiefe place; neither that the facultie onely which is lodged within and receiveth the Images of things, and after deliberation or discourse doth judge of them; but much more the whole set of Sences which doe outwardly perceive all sensible objects, and perceived, doe carrie them to the Tribunall of the internall Sence and doe so informe it, that it is able to pronounce a true judgement concerning them. [. . .] if we conceive any thing in our minds and nourish that conceit by discourse, againe and againe ventilating it to and fro, we shall observe that all things had their originall from the outward Sences; for neither could Colours, Odours, nor Savours be knowne, neither could the internall Sence discourse of Sounds, or any Tactile qualities without the message (as it were) and information of the outward Sences, by which the Images of things are imprinted in it. And with this doth the Philosophicall Axiome agree. . . . Nothing is in the Understanding which was not before in the Sense.57

Conclusion The gradual dominance of vision, and the impact of this on human consciousness – on the way we gather and share knowledge and think – has a long history, and it is still ongoing: a new field, digital humanities, is encouraging us to explore more

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ways of visualising information. For many, this is a process of modernisation. ‘Oral cultures indeed produce powerful and beautiful verbal performances of high artistic and human worth,’ Ong famously wrote in 1982, yet ‘without writing, human consciousness cannot achieve its fuller potentials, cannot produce other beautiful and powerful creations.’ He goes further to argue that literacy ‘is absolutely necessary for the development not only of science but also of history, philosophy, explicative understanding of literature and of any art, and indeed for the explanation of language (including oral speech) itself’.58 Ong is not without his critics. However, it is hard to disagree with Andrew Warwick’s argument that the curriculum of the ‘exact sciences’ like mathematics would never have developed without the shift at Cambridge University in the early nineteenth century from oral to written examination. Pen and paper enabled students to solve problems that had previously challenged the best minds among their tutors.59 Yet, for all the advances that sight dominance offers us, there have been losses too. In this chapter we have tried to recover what has been rendered invisible to modern medicine since the invention of the laryngoscope, and to the humanities since our acceptance of the powerful alliance of modernisation with silent literacy. In early modernity, the voice had a primary function in communication of all kinds, especially in a culture in which most writing – including of anatomical texts themselves – was a script for vocalisation: for reading aloud, discussion and debate. Voice was central to almost every kind of transmission of knowledge, from the apparently hard facts of the anatomy class to the subtle calibration of emotional temperature in song or sermon, to philosophical speculation. In practice, whether attending to the reading aloud from an anatomy or a book of poetry or prayers, the Renaissance listener understood voice to be the most efficacious means for impressing understanding on the mind. We forget its rich history and its implications for varied ways of knowing at our peril.

Acknowledgements The research for this chapter has been made possible with generous funding from a variety of sources. Richard Wistreich would like to thank the Newberry Library, Chicago, who awarded him a Mellon Postdoctoral Research Fellowship to work on Renaissance voice in 2007. Jennifer Richards would like to thank the Leverhulme Trust, who awarded her a Major Research Fellowship, 2013–15, to write a history of reading aloud in the English Renaissance. Both of us would like to thank the Arts and Humanities Research Council, who awarded us jointly a Network Grant for ‘Voices and Books 1500–1800’, 2014–15.

Further Reading Steven Connor, Dumbstruck: A Cultural History of Ventriloquism (Oxford: Oxford University Press, 2000). Anne Karpf, The Human Voice: The Story of a Remarkable Talent (London: Bloomsbury Publishing, 2006).

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Cynthia Klestinec, Theaters of Anatomy: Students, Teachers, and Traditions of Dissection in Renaissance Venice (Baltimore: The Johns Hopkins University Press, 2011). Gail Kern Paster, The Body Embarrassed: Drama and the Disciplines of Shame in Early Modern England (Ithaca, NY: Cornell University Press, 1993). Philippe-Joseph Salazar, Le Culte de la voix au XVIIe siècle: Formes esthéthiques de la parole à l’âge de l’imprimé (Paris: Honoré Champion Editeur, 1995). Jonathan Sawday, The Body Emblazoned: Dissection and the Human Body in Renaissance Culture (London and New York: Routledge, 1995).

Notes 1. Jonathan Sawday, The Body Emblazoned: Dissection and the Human Body in Renaissance Culture (London and New York: Routledge, 1995), p. 1. 2. Ibid., p. 6, citing The Oxford English Dictionary (OED), entries 1 and 2. These entries have been updated on OED Online: ‘seeing with one’s own eyes’ (1) and ‘Examination of the organs of a dead body’ (OED 2a) (accessed 29 March 2015). For an exploration of anatomy from the point of view of a visual artist, see Rachael Allen, ‘The Body Beyond the Anatomy Lab: (Re)addressing Arts Methodologies for the Critical Medical Humanities’, in this volume, pp. 186–208. 3. Modern medicine now makes it possible for patients to see inside their own bodies, as Jane Macnaughton reminds us. 4. See (accessed 31 May 2015). See also Jennifer Richards, ‘Reading and Hearing The Womans Booke in Early Modern England’, Bulletin of the History of Medicine 89.3 (2015), pp. 434–62. 5. Cynthia Klestinec, Theaters of Anatomy: Students, Teachers, and Traditions of Dissection in Renaissance Venice (Baltimore: The Johns Hopkins University Press, 2011), pp. 95–7, 98–100. 6. Ibid., pp. 106–7. 7. On different interpretations of this frontispiece, see ibid., pp. 34–5. 8. See Richards, ‘Reading and Hearing The Womans Booke in Early Modern England’. 9. See Corinne Saunders, ‘Voices and Visions: Mind, Body and Affect in Medieval Writing’, and Heather Tilley and Jan Eric Olsén, ‘Touching Blind Bodies’, in this volume, pp. 411–27 and 260–75. 10. We usually explain ‘understanding’, for example, with visual metaphors. With the exception of New Yorkers and the African Basotho, we are used to saying ‘I see’ rather than ‘I hear’ when we mean ‘I understand’; see Anne Karpf, The Human Voice: The Story of a Remarkable Talent (London: Bloomsbury Publishing, 2006), p. 200. 11. Jane Macnaughton and Havi Carel wrestle with the same problem in ‘Breathing and Breathlessness in Clinic and Culture: Using Critical Medical Humanities to Bridge an Epistemic Gap’, in this volume, pp. 294–309. On the voice as a ‘sense’, see Matthew Milner, The Senses and the English Reformation (Farnham: Ashgate, 2011), pp. 30–1. 12. Thomas Tomkis, Lingua: or The Combat of the Tongue, and the Five Senses for Superiority. A Pleasant Comoedie (London, 1607), A3r, C3v. 13. Ibid., M4v. 14. Pierre de la Primaudaye, Suite de l’Académie Françoise: deuxième livre (Paris: Guillaume Chauderie, 1593; repr. Geneva: Slatkine, 1972); first translated as The Second Part of the

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15. 16. 17. 18. 19. 20. 21. 22. 23.

24. 25.

26.

27. 28.

29. 30. 31.

32. 33.

34. 35. 36. 37.

jennifer richards and richard wistreich French Academie, by Thomas Bowes (London: George Bishop, 1594), repr. as The French Academie: Fully Discoursed and Finished in Foure Bookes (London: Thomas Adams, 1618), p. 379. Helkiah Crooke, Mikrokosmographia: A Description of the Body of Man (London: 1615), p. 645. Ibid., p. 633; he is describing the Adam’s apple. Ibid. Ibid., p. 645. Ibid., p. 646. (accessed 15 October 2014). (accessed 15 October 2014). Steven Connor, Dumbstruck: A Cultural History of Ventriloquism (Oxford: Oxford University Press, 2000), p. 3. Verlyn Klinkenborg, ‘Some Thoughts on the Lost Art of Reading Aloud’, New York Times (accessed 22 December 2012). OED Online: The Oxford English Dictionary, entry 1a, (accessed 30 March 2015). Giulio Cesare Casserius, partially translated by Malcolm H. Hast and Erling B. Holtsmark as ‘The Larynx, Organ of Voice, by Julius Casserius’, Acta Oto-Laryngologica, Supplementum 261 (Uppsala, 1969), pp. 1–33 (p. 15). Klestinec, Theaters of Anatomy, p. 35, citing Vesalius, De Humani Corporis Fabrica (Basle, 1543), dedication, 4r, following the English translation in Vesalius, On the Fabric of the Human Body, ed. and trans. William F. Richardson and John B. Carman (San Francisco: Norman Publishing, 2002), vols. 1–3. Ibid., pp. 36–7. See Daniel H. Garrison and Malcolm H. Hast, ‘Andreas Vesalius on the Larynx and Hyoid Bone: An Annotated Translation from the 1543 and 1555 Editions of De Humani Corporis Fabrica’, Medical History 37 (1993), pp. 3–36. Aristotle, Aristotle’s De Anima: Books II and III (With Certain Passages from Book I), trans. D. W. Hamlyn (Oxford: Clarendon Press, 1968), 420b 5; 420b 27. Ibid.; see Hamlyn’s explanation, p. 109. Galen, On the Usefulness of the Parts of the Body: De Usu Partium (c. 165–175 ce), trans. and ed. Margaret Tallmadge May, 2 vols (Ithaca, NY: Cornell University Press, 1968), vol. I, book 7, p. 340. See also Introduction, p. 63. Thomas Elyot, Castel of Helthe (London, 1539), A2v. Girolamo Fabrizio ab Acquependente [Fabricius], De Visione, Voce, Auditu (Venice, 1600); De Locutione, et eius Instrumentis (Venice, 1603) and De Brutorum Loquela (Venice, 1603), reissued as Opera Physica Anatomica (Venice, 1625). Klestinec, Theaters of Anatomy, p. 59. Ibid., pp. 55–62. Philippe-Joseph Salazar, Le Culte de la voix au XVIIe siècle: Formes esthéthiques de la parole à l’âge de l’imprimé (Paris: Honoré Champion Éditeur, 1995), p. 23. Ibid., p. 24: ‘La réflexion sur la voix humaine couronne ainsi, chez Fabricius, une enquête sur l’expression (manifestio) et la communication (communcatio) de l’intériorité: le corps, ouvert sur la planche anatomique, ne livre pas seulement ses organes, il s’ouvre sur ce qui n’est pas encore disséquable, l’âme et, pour ce qui nous intéresse ici, la voix.’

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38. Casserius, ‘The Larynx, Organ of Voice’, p. 10. 39. ‘[V]oce praestantius, nil admirabilis, nil divinius (si animam semper excipias)’, Casserius, De Vocis Auditusque Organis Historia Anatomica, p. 4, cited in Salazar, Le Culte de la voix au XVIIe siècle, p. 27, n. 49. 40. Casserius, ‘The Larynx, Organ of Voice’, p. 15. 41. Ibid., p. 11. 42. Ibid., p. 14. 43. Ibid., pp. 9, 12–13, 15. 44. ‘Quartum ut non contenti sitis res aliquas semel aut bis lectitasse et percepisse, sed eas animis saepius obversetis atque dum occasio datur, cum amicis atque praeceptoribus conferatis, examinetis, atque disputetis,’ Richard J. Durling, ‘Girolamo Mercuriale’s De modo studendi’, Osiris, 2nd series, 6 (1990), pp. 181–95, 194–5. 45. Crooke, Mikrokosmographia (1615), p. 698. 46. Helkiah Crooke, Mikrokosmographia (London, 1631), sig. ¶3v. All citations are to the 1631 edition in this section. 47. Ibid., p. 19. 48. Ibid., sig. ¶1v. 49. Ibid., sig. ¶2v–3r. 50. This image is the frontispiece to Gail Kern Paster, The Body Embarrassed: Drama and the Disciplines of Shame in Early Modern England (Ithaca, NY: Cornell University Press, 1993). 51. On the meanings attributed to the open hand, see Cornelius O’Boyle, ‘Gesturing in the Early Universities’

(accessed 22 October 2014]. ‘Crooke’s own likeness is thought to be that of the anatomy lecturer in Martin Droeshout’s elaborate title page to the Microcosmographia of 1631,’ Oxford Dictionary of National Biography (accessed 18 December 2015). 52. See Lauren Kassell, ‘Medical Understandings of the Body, c.1500–1750’, in Kate Fisher and Sarah Toulalan (eds), The Routledge History of Sex and the Body, 1500 to the Present (London: Routledge, 2013), pp. 57–74, who notes that the many different opinions of this composite work mean that it is cited in different scholarly studies in support of whatever point is being made; we need to recognise that it is a composite work (p. 63). 53. Crooke, Mikrokosmographia (1631), pp. 530–1. 54. Ibid., p. 667. 55. Ibid., p. 697. 56. Ibid., p. 646. 57. Ibid., p. 647. 58. Walter J. Ong, Orality and Literacy: The Technologizing of the Word (London and New York: Methuen, 1982), pp. 14–15. 59. Andrew Warwick, Masters of Theory: Cambridge and the Rise of Mathematical Physics (Chicago: University of Chicago Press, 2003), pp. 114–75 (p. 117).

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16 BREATHING AND BREATHLESSNESS IN CLINIC AND CULTURE: USING CRITICAL MEDICAL HUMANITIES TO BRIDGE AN EPISTEMIC GAP Jane Macnaughton and Havi Carel

Introduction: Critical Medical Humanities and Somatic Illness central tenet of critical medical humanities is the claim that biomedicine does not hold all the keys to understanding the experience of illness, how responses to treatment are mediated, or how outcomes and prognosis are revealed over time. We further suggest that biomedicine cannot wholly explain how illness may be expressed physiologically. So much that influences that expression derives from cultural context, emotional response, and how illness is interpreted and understood that this knowledge cannot be exhausted with the tools of biomedicine. In as much as it has focused on clinical medicine, medical humanities has tended to concentrate on the manner in which symptoms are presented and discussed by clinician and patient, how potential diagnoses are handled, and how prognoses might be delivered and received. What the field has not interrogated or influenced, until recently, has been bioscientific ways of thinking about how clinical conditions are understood and how research into treatment and management is conceived. The ‘Hearing the Voice’ project,1 led by one of this volume’s editors and involving a number of contributors, is the first project, as far as we are aware, that has attempted specifically to extend the gaze of medical humanities from the clinical interaction to critically examining the evidence base that underlies that interaction. That project’s main intersection with clinical medicine is in psychiatry; it studies the phenomenon of auditory verbal hallucination. This chapter, nested within a section on the body and the senses, emerges from the ‘Life of Breath’ project, which seeks to explore breathing and breathlessness. These phenomena, we suggest, are similarly complex, poorly understood and often unproductively reduced to their physical components.2 It is, to the best of our knowledge, one of the first attempts to apply medical humanities understanding and approaches to the study of ‘somatic’ phenomena – breathing and breathlessness – with a view to challenging and broadening the evidence base on which breathing symptomatology is addressed clinically.

A

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In this chapter, we examine breathing and breathlessness as phenomena pregnant with historical, cultural and existential meanings that are often overlooked in the clinical context. We argue that this represents an epistemic gap: an apparently unbridgeable mismatch of understanding not only of knowledge but also of how that knowledge might be obtained, between the clinic and the person who experiences breathlessness. We go on to propose how critical medical humanities may help bridge at least some aspects of this gap by looking at key issues relating to breathlessness that clinicians are grappling with in public health, clinical diagnosis and treatment, and in clinical research. Our focus here is on how a critical medical humanities approach might influence current and future thinking on modelling neurophysiological mechanisms underpinning breathlessness. In the clinical areas we consider, breathing and breathlessness are comparatively invisible. This is one issue we aim to address in the project. However, given the deep human significance of these phenomena, there is a marked lack of humanities research too. Most of what we find in the humanities literature concerning breathing and breathlessness derives from narrative forms (in Angela Woods’s formulation) and are understood or interpreted in relation to larger cultural narratives.3 We briefly review some of these, suggesting that there is a need also for phenomenological, non-narrative accounts and practices. We conclude by tentatively exploring what some of these might be in a clinical setting with specific reference to how breath might be understood using novel imaging techniques.

The Multi-dimensionality of Breath Breathing is literally at the centre of our bodies; it is essential to life. Much of the time we are unaware of it, in the same way that we cannot feel our heart beating or our stomach digesting food. However, if we call upon the body to do more physical work, breathing becomes laboured, eventually leading to breathlessness; in such situations our breath becomes the focus of attention until it returns to normal. Breathing is also affected by extremes of emotion: surprise or horror make us gasp, hearty laughter leaves us gasping for breath, crying involves involuntary short, sharp inhalations. What is perhaps less apparent about breath in these everyday experiences is that it is the only bodily site (other than the skin) where interior and exterior spaces are in constant exchange. We breathe in the air and whatever it contains, extract the oxygen we need, and expel carbon dioxide. The air around us, with its pollutants, odours, humidity and heat, becomes internalised briefly, making us beings who are not only in the world, but also of it. These observations about the everyday experience of breathing point towards the potential for a critical medical humanities approach in this area. The very idea of breath is suffused with metaphor. Breath literally takes place in the chest, the centre of our body; metaphorically it is the core of life; our first and last breaths mark life’s beginning and end, and breathing continuously happens throughout life. Breathing is richly modulated by emotional experience, be it pleasurable or painful.

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Our existence, consciously or unconsciously, is influenced by the equilibrium between our bodies and the external world. This is nowhere more significantly experienced than through breath. However, biomedicine does not acknowledge the ways in which everyday experience and its meanings are implicated in breathing, and thus neglects to incorporate this rich vein into its understanding of breathlessness. Metaphor, emotion and the spiritual and existential dimensions are not part of the language of the clinic, but are a central part of the experience of the patient. As Woods has pointed out, medical humanities has tended to prioritise narrative accounts of patient experience in presenting alternative accounts of illness.4,5 Non-narrative aspects of experience are not easy to articulate, but this task is crucial to a comprehensive understanding of breathlessness since it is acknowledged by clinicians and by those who experience breathlessness, that emotion and belief have a profound impact upon the severity of this problem. Before we set out, we must also ask: what is it that medical humanities wishes to achieve? There is no single answer to this question. Historically, this field was inspired in the US in the 1960s by concerns about healthcare delivery and education. ‘Depersonalisation’, ‘the centrality of molecular biology’ and the ‘teaching of mechanistic medicine’ were the key problems identified.6 More recently, engaging more fully with humanities and social science scholarship (at least in the UK) has led the field to focus more upon the generation of new knowledge for its own sake, rather than as a reaction to problems with clinical medicine. It has striven to become academically robust and to go beyond the idea of helping to improve healthcare or to provide an explanatory bridge by which the arts and humanities might be used to convey complex clinical science to patients. If the field takes an exclusively instrumental approach to serving the ends of clinical research, care and practice, it will be difficult to avoid remaining embedded within a clinical culture that itself remains unexamined.7 If clinical culture is viewed from the external vantage point of the humanities, however, entire new vistas may become visible, and thus be opened for critical examination. The phenomenological concept of habitus is a good illustration of this point. In his analysis of the concept, philosopher Dermot Moran speaks of ‘bodily habitus’: ‘Memories, skills, and practical abilities are literally incorporated in the body, in the way we hold ourselves, move our bodies, walk, sit, eat, look weary, adopt a defeated air, and so on.’8 The contexts within which we find ourselves, our physical surroundings, and the ways in which the body is acted upon by those surroundings, on this view, actually change the body. The body is not just a neutral object whose objective measures may be taken to be the same, regardless of context. The idea that a clinical context may itself imbue its subjects with ways of moving, talking and sitting is alien to clinical culture but requires thorough examination and reflection. This insight alone is enough to justify the critical role of medical humanities. But this chapter also offers a critical medical humanities that is interested in helping improve breathless patients’ care. The reflective movement we propose to undertake here is from the clinic to critical medical humanities and then back to the clinic, in the

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form of intervention, education, policy change and ultimately improvement of patient care and experience. This critical arc is one of continuous engagement that does not end after one iteration. Thinking concretely about breathless patients, whilst taking the notion of habitus as a starting point, it seems crucial to explore patients’ own memories and skills in order to understand their predicament, but also to recognise that this exploration cannot end by simply noting patients’ responses. The aim is to help both patients and those who are trying to develop new approaches to the management of breathlessness. Of course, as we suggest above, there is a danger in committing ourselves as medical humanities scholars to align with the ends of medicine: we may lose our critical framework as we become embroiled in the need to support such work. We believe that this risk is averted by the focus on the iterative process, which does not end in the clinic but also points to new research directions in the humanities and social sciences. Breathlessness is a condition we all know something about, as we have all experienced breathlessness either as part of normal life or as an abnormal manifestation of one of the common diseases of which breathlessness is a symptom, such as asthma, heart failure, chronic obstructive pulmonary disease (COPD) or lung cancer. We claim that normal breathlessness differs substantially from abnormal breathlessness in its many forms in clinical contexts, where it is regarded as a ‘symptom’. This led us to identify an epistemic gap between clinical knowledge and two other interlinked kinds of knowledge: the broader cultural knowledge within which clinical knowledge is tacitly nested and the idiosyncratic personal experience of breathlessness, also informed by culture and later by encounters in the clinic. The interplay between the three epistemic domains is complex, and made more so by the differences in epistemic authority, credibility and power relations, both within each domain and between the various domains.9 This approach not only highlights an issue that was clear to William James: that psychological situatedness is an important determinant of how we might interpret experience.10 It also allows us to stress the crucial importance of an interdisciplinary approach to understanding this epistemic gap and how it might be bridged. We suggest that people who experience breathlessness filter that experience through a rich set of influences that have a long cultural history and determine its seriousness for them. But as they approach clinical services, this lay understanding comes up against bioscience; it is met by a particular series of prescribed questions against which the now-patient must assess their breathlessness and through which their understanding begins to change. That change may be temporary, until they leave the clinic and return to their own environment. But the change may be more deep-seated. For example, the patient may now adopt a deficit approach to her breathlessness, having been shown through lung function tests (LFTs) what percentage of predicted lung function she has. She might feel that she has failed the test and begin to experience her breathlessness as more anomalous and shameful than before. An interdisciplinary approach is required here because coming to grips with such complex processes requires not only cultural, literary, historical and philosophical examination, but also

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social scientific understanding of how the clinic works as a habitus that may challenge and change lay perceptions. We need this approach in order to appreciate the ways in which the culture of medicine plays a role in creating the objects of its concern. It is not usual for clinicians to admit humanities or social science evidence into clinical work and policy deliberations.11 Hence the first step for us is to identify areas of need that are not answered by a biomedical approach and to examine ways of approaching these needs from a multi-disciplinary and critical medical humanities approach. There are three such areas of need in the domain of breathlessness. They are interlinked, but it will be useful to deal with them separately, as they relate to three key areas of activity: public health, clinical diagnosis and treatment, and clinical research.

Breathlessness and Public Health Breathlessness is a key symptom in a number of common and serious diseases, such as heart failure and lung cancer, as well as in COPD, a condition with an increasing global prevalence owing to its association with smoking. Air pollution has been an important cause historically, and women in developing countries often develop COPD as a result of time spent poring over cooking fires.12 The World Health Organisation currently ranks COPD as the fourth most common cause of death in developed countries and it is estimated that it will become the third largest global killer by 2020.13 COPD affects an estimated 3.7 million people in the UK but crucially only 900,000 of them are aware of having the condition.14 Thus breathlessness and COPD are of urgent interest to public health. In particular, the hidden burden of disease – that is, the ways in which it exacts a cost from the person suffering from the disease and from society – is of concern and has been the subject of recent analysis. Gysels and Higginson have described the symptom of breathlessness, and the patients suffering from it, as ‘invisible’. This invisibility stems from the fact that breathlessness is a condition that usually has an insidious onset and is often attributed by those who experience it to ageing, lack of exercise, or smoking.15 The stigma associated with smoking is also a factor encouraging people to hide their condition or its severity. Clinicians, who are increasingly less likely to visit people in their own homes, are unaware of the complex needs, limitations and adjustments required when living with breathlessness.16 The invisibility of breathlessness has a social element but is also political and economic in the clinical context. Smoking is a key aetiological factor in the most common diseases leading to chronic breathlessness, and in developed countries smoking prevalence is now pooled in the lowest socioeconomic groups. Thus those who have power to determine priorities in terms of research spending or treatment do not tend to have day-to-day experience or knowledge of the lives of people with conditions like COPD. Partly in consequence, despite its high prevalence and high levels of mortality, COPD has received little attention from clinical researchers and pharmaceutical companies.17

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The reasons for this neglect are significant for our medical humanities analysis. Breathlessness is something that people expect they will experience more the older they get, or as they gain weight or become less fit. Those who smoke think breathlessness is a natural result of smoking and do not necessarily associate it with the development of a disease. The lack of investment in research is also linked to the idea that breathlessness associated with COPD is a self-inflicted problem, and that it is largely irreversible. Unlike asthma, which has been relatively well researched, COPD cannot be modified by medication, only relieved. Once established, its course is slowly progressive even if the patient stops smoking.18 If clinicians and researchers – and indeed the pharmaceutical industry – feel there is likely to be nothing achieved in seeking new therapeutic approaches, research funding tends not to flow in this direction. This neglect of breathlessness has a deeper significance in relation to clinical problems of definition and uncertainty about what is to be treated: the underlying condition or the experienced symptom. We now move on to this issue.

Breathlessness in the Clinic Breathlessness is a symptom, not a disease. The traditional clinical approach to dealing with a symptom is to find out what is causing it, treat it and wait for the patient to improve. This rarely happens in chronic breathlessness. As Johnson, Currow and Booth argue, chronic breathlessness frequently results from incurable, often long-term, progressive conditions, and the symptom persists despite treatment of the underlying condition.19 They have termed such breathlessness ‘refractory’ and suggest that the attitude of clinicians and patients towards it is one of ‘nothing more can be done,’ leading to hopelessness and lack of attention to the symptom from both parties. Patients may no longer report increasing distress to their doctors; clinicians may fail to ask about the problems caused by the breathlessness, as they feel unable to help. The problem of invisibility is compounded by a sense of helplessness. The response to this has been, in part, to look to deeper understanding of the pathophysiological and neurophysiological mechanisms associated with breathlessness in order to seek possible pharmacological or other approaches to alleviating the symptom.

Clinical Research Developments: the Neuroscience of Breathlessness This takes us to our final field of clinical interest and development: the clinical science of breathlessness. The American Thoracic Society’s 2012 ‘Update on the Mechanisms, Assessment, and Management of Dyspnea’ notes considerable concern about the lack of treatment for dyspnoea (pathological breathlessness) itself.20 The statement notes that there are still no drugs for which relief of dyspnoea per se is an approved indication (as opposed to approval for treatments of diseases in which dyspnoea is the prominent symptom).21 The main treatment options for breathlessness are opioid medications, which depress breathing, smoking cessation where relevant, and pulmonary rehabilitation.

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Pulmonary rehabilitation aims to teach and encourage regular exercise, which increases patients’ fitness and reduces their breathlessness. The programme also includes health education on relevant issues such as panic attacks (common in respiratory conditions), stress management and diet. Pulmonary rehabilitation seems to work for those with pathological breathlessness, as it reduces the feeling of breathlessness, but there is no evidence that it actually improves lung function in important conditions such as COPD (although it does improve fitness).22 It is important to note the crucial role of perception in breathlessness. Further confusion for clinicians comes from the fact that patients may experience severe breathlessness with mild disease (as measured by spirometry) and vice versa.23 Clinical research has therefore turned its attention from a focus on the body (the lungs and muscles of respiration) to the brain, and has started to investigate the sites of cognitive and affective processes involved in the complex experience of breathlessness. One of the fascinating aspects of breathing is that it is under both involuntary (autonomic) and voluntary control. It is possible to hold one’s breath for a while, even though the autonomic system will eventually override this voluntary action. Therefore there are potentially a number of sites that might be important in the control of breathing, including brain stem and cortical areas. Herigstad and colleagues reviewed a series of papers that revealed at least nine areas involved in the voluntary control of breathing, including cortico-limbic structures that also subserve sensations such as thirst, hunger and pain, and the amygdala (also part of the limbic system) which deals with memory and emotions.24 Such neuroimaging studies have the potential to help delineate sensory from affective components of breathlessness and improve understanding of how emotional and cognitive processes affect not only the perception but also the pathophysiology of breathlessness. This means that the search to find new mechanisms by which breathlessness might be relieved through new drugs is on. Claudine Peiffer, for example, is using current neurological understanding to propose that stimulating a sense of relief or pleasantness at the site where the sensation of breathlessness is processed centrally might be a productive direction for this research.25 We have explored key clinical concerns in relation to breathlessness for a reason. Our experience in medical humanities suggests it is not easy to engage clinicians who have no particular reason to acknowledge that our field may have anything useful to offer their practice or research. It is, therefore, our responsibility to explain how our work might potentially contribute. The aim is to enter into a dialogue in which the issues we have explored might act as a starting point to stimulate mutual exploration. Critically engaged medical humanities research of the kind we are setting out on in the ‘Life of Breath’ cannot be carried out without the willing participation of clinicians working alongside humanities and social science researchers, who may have different disciplinary interests but are all committed to answering some common questions. Our discussion above reveals that a crucial field of inquiry in clinical studies of breathlessness is the neuroscientific understanding of breathlessness, and asking how this will support potential work in discovering new methods of treatment. We now turn to some concrete examples of gap-bridging work in the domain of breathlessness.

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Bridging the Epistemic Gap 1: Influencing the Modelling of Breathlessness Clinical scientists recognise that there are problems with some of their approaches. They have identified a need for sophisticated work on the phenomenology of breathlessness in order that research on neurophysiological mechanisms and brain mapping can be more accurate and perhaps more successfully lead to potential new treatments. Herigstad notes, ‘future research should [. . .] employ predictive, and thus testable, models of brain function rather than aimlessly searching for static “blobs” of activation.’26 In their 2012 review, the American Thoracic Society states that ‘more than at any time in the past there is a need for interdisciplinary approaches to research into dyspnea mechanisms and actions that will accelerate translation of research findings into clinical practice.’27 This call for interdisciplinary work does not explicitly include medical humanities, but there is clearly a need for greater understanding of how the experience of breathlessness is created in the conscious experience of the breathless person. What a medical humanities approach can contribute here are some pieces of the puzzle, as well as a general framework through which to think through these issues. For example, a phenomenological framework posits the essential indivisibility of experience, which is not acknowledged in the clinical context. Research on mapping the brain areas involved in breathlessness is taking pain studies as its model.28 It is recognised by some researchers that such a focus might distract researchers from uncovering the complex sensori-emotional mechanisms that are unique to breathlessness, but nevertheless, the ‘pain matrix’ has a pervasive hold in this area.29 There are two main critiques our approach might make to this, which we can then use to offer constructive ways forward. Firstly, while those investigating the neurophysiology of breathlessness are now envisaging a multi-dimensional explanatory model based on that of pain, which takes the emotions into account, there remains a temporal linearity to this model that may obstruct creative thinking. Lancing and colleagues have represented their view of the perception of breathlessness in the model in Figure 16.1. There is general agreement about this kind of conceptualisation, as Peiffer comments: There is indeed increasing evidence that dyspnea encompasses affective/cognitive dimensions, including an immediate emotional reaction and a secondary, more sophisticated reaction . . . which have a crucial influence on the subjective experience of this symptom.30 What is striking about this model from a critical medical humanities perspective is that affect is presented as deriving from the sensation of breathlessness, whereas the framework discussed above suggests that the experience of breathlessness is profoundly coloured by prior experience, beliefs and cultural influences. Thus affect is not just a response to being breathless, but also determines what that experience is like for the breathless person. Of course, models are not intended to replicate reality, as Annamaria Carusi says in her chapter in this volume, but nevertheless, this model strongly suggests that the neurophysiologists are not including the impact of prior emotional experience or belief amongst the afferents influencing the perception of breathlessness.

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Figure 16.1 Reprinted from The Multiple Dimensions of Dyspnea: Review and Hypothesis, Robert W. Lancing, Richard H. Gracely, Robert B. Bansett, ‘Respiratory Physiology and Neurobiology’, Fig. 2, p. 17. Copyright 2009, with permission from Elsevier. What our work in the ‘Life of Breath’ project is directed towards is exploring the influence of space and place, the origins of beliefs and the nature of cultural influences on breath. The outcomes of this work, in dialogue with clinical collaborators, have the potential to enable us to influence the future shape of explanatory models by suggesting that initial sensory intensity and quality are affected by a range of prerequisites, not just physiological afferents. Understanding this and constructing a more accurate and complex model may in turn enable more effective hypotheses about management to be explored. Secondly, the focus on pain as a road map might also lead to concentration on negative emotional correlates rather than the positive ones that may be associated with healthy breathlessness (of the kind people experience normally during exercise). In fact, this research has been carried out almost exclusively on healthy subjects because of the difficulty of subjecting breathless patients to prolonged scanning in a horizontal position; this leaves unanswered the question of what distinguishes non-pathological and pathological breathlessness in phenomenological and neurophysiological terms. This distinction has potential clinical importance because when patients and (healthy) health professionals talk about ‘breathlessness’, they may be referring to two distinctive and radically differing experiences of breathlessness.31 Our critical medical humanities approach proposes taking a step back to determine whether there are differences in the experience of these two groups. We will carry

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out comparative phenomenological work with what we call ‘aware breathers’, who develop an awareness of breathing because of certain practices, such as sport, singing or playing a wind instrument, and with people who have pathological breathlessness. We intend to investigate the differences between these two groups and discuss these with clinical collaborators. We hope to establish whether such differences might account for how pleasant or unpleasant breathlessness might appear differently in imaging studies. Such findings may enable more sophisticated predictive modelling of how breathlessness is mapped within the brain, as little work has been done to date to map normal breathing to allow for comparison. Having approached breath and breathing from the perspective of the clinic, we now turn to the ways in which the humanities and social sciences have treated these phenomena. The next section focuses on the invisibility of breath. We conclude by considering how a novel method for making breath visible might provide a way of bringing humanities and clinical concerns fruitfully into dialogue.

Stepping into the Invisible In both the humanities and social sciences, the theme of ‘invisibility’ looms large with respect to breathing. This theme is mirrored by Jennifer Richards and Richard Wistreich’s discussion of the ephemeral nature of the voice in this volume. There is no developed phenomenological literature on breathing or breathlessness written from a philosophical perspective, although Havi Carel’s work has begun to fill this lacuna;32 nor is there a comprehensive historico-cultural study of breathing. The closest cultural–historical analysis is Steven Connor’s monograph, The Matter of Air, a study of human perceptions of air and how these have interacted with technology and culture. Connor provides insight into why breath has not been a significant object of study – precisely because (as he suggests of air): How was one to make of the air such an object? How is the air to be picked out of its surroundings, when air was ambience itself? How was the air to be brought before one, when it was of necessity and at all times all about?33 In the clinical context, breathlessness’ invisibility takes the form of millions of undiagnosed sufferers, hidden symptoms, stigmatised lives, and proxies being used for real (and therefore invisible) patients in clinical research. Within cultural theory, invisibility has a different interpretation. Echoing Connor’s writing on air, Davina Quinlivan’s monograph, The Place of Breath in Cinema, opens by saying: ‘How can we start to think about something we cannot see?’34 Both authors consider how the invisible can be made visible. For Connor, this includes interactions with machinery and the manufacturing of gasses; and for Quinlivan, a film studies scholar, it is through sound. She examines the laboured breath sounds of Darth Vader in Star Wars, and the ‘terrible, troubled breathing’ of John Merrick in The Elephant Man.35 Quinlivan is interested in a broader investigation of breath in relation to theories of the body in relation to the arts. Her monograph explores ‘how breathing represents a

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subtle dimension of our bodies that can be seen to be both inside and outside of ourselves’.36 We add that breathing not only is both ‘inside’ and ‘outside’ ourselves, but also acts as a conduit and a connection with the world around us. This connection is physical; it is literally air we inhale from the outside that becomes incorporated into our bodies in the form of oxygen molecules in the blood stream. But it is also a spiritual connection, relating us to the symbolic or non-material context. For example, David Abram, in The Spell of the Sensuous, discusses how the Navajo tribe consider breathing an act of keeping in contact with spirits, which are in the air and can be connected with via respiration.37 Abram writes that, according to the Navajo, ‘this invisible medium, in which we are bodily immersed, is what provides us with the capacity for conscious thought.’38 Such ideas resonate with notions from ancient Greek texts that are deeply embedded in our culture. Aristotle, in his treatise ‘On Respiration’, speaks of an extended mind or soul that is part of the surrounding air and enters the body with the intake of breath.39 This connection between wind/air and spirit is noted etymologically in many languages; from the Sanskrit Atman to the Hebrew Ruach and the Greek pneuma, we find that the terms for air, breath and spirit overlap.40 Closer to home, we might consider the intuitive act of inhaling deeply when getting to the seaside or countryside. Breathing in the fresh air might act to remove some of the city pollutants (exhaust fumes, industrial pollution) but also, on a psychological or spiritual level, it may mean taking in the calm of the countryside, to replace the hectic city stress. This reflection and the desire to investigate the way in which a study of breath can further illuminate theories of the body lead to phenomenological exploration in the context of a medical anthropology study of ‘aware breathers’ described above. Simone Denis, in her ethnography of smokers, describes ‘Megan’ using her smoky breath to flirt. She quotes Megan as saying, ‘If I am interested [in a man] I like to blow my smoke up around the side of his face, like a caress.’41 The cigarette smoke – the visible expulsion of breath – is used by her in a sensuous way to ‘touch’ the other person. Brian Lande explores another group of aware breathers in his ethnography of soldiers. His study demonstrates the importance of ‘breathing like a soldier’ for two crucial activities: running and shooting. Keeping up with the leaders running long distances is a prerequisite for military activity. In order to maintain authority, the troop leader must not be found ‘puffing at the rear’. Firing a rifle requires understanding of how breathing might nudge the sights off target. Lande concludes: ‘breathing is far from being a taken-for-granted physical activity. It is the social sinew that holds together social institutions by anchoring norms and beliefs in viscera.’42 As noted in the previous section, there has been little ethnographic work with ‘aware breathers’, but the few existing studies indicate the central role of breath in identity formation and sense of self within the world. Importantly, these identities are not necessarily continuous or even overlapping with those supplied, learned or assumed within the clinical context. There are also ‘aware breathers’ who are aware of their breath because it is pathological. They experience breath as a lack, insufficiency or absence. In such cases the

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experiences of breathlessness incorporate feelings of fear or impending death, for example, as is reported by patients who are severely short of breath. However, these experiences are discontinuous with the clinical account, which focuses on measuring objective lung function and on assessing functionality with respect to daily living, rather than the subjective experience of breathlessness.43 The protagonist in Michael Symmons Roberts’s novel, Breath, reflects upon his breathing while he awaits a lung transplant, after his lungs were damaged in a gas attack: Somehow, even now on the brink of having his weakest lung cut out and replaced with a new one, he can’t locate the problem in his own chest. Sure his chest is heaving as his lungs try to drag in the air, but it still feels like a problem with the air, not with his body. On that April morning so many years ago, the air itself was altered, and his sensitive lungs failed to adapt.44 The focus of this aware breather is on the air failing to provide what his body craves. It is the medium within which he exists that is now in some way alien to his body. He is like a fish out of water, unable to access what he needs from the surrounding element. The importance of the air as a medium is signalled in the first episode of the BBC’s Doctor Who starring Peter Capaldi as the Doctor, entitled ‘Deep Breath’.45 In a pivotal and uncanny scene, the Doctor and Clara, his assistant, meet in a restaurant surrounded by other diners. The Doctor becomes aware of an eerie stillness, and plucks one of Clara’s long hairs to test for movement in the air. He twists the hair round his finger and drops it. The hair falls to the ground without deviation and the Doctor concludes that none of the other diners is breathing and thus there is no air movement. The uncanniness of this scene contrasts deeply with the Navajo tribe’s conception of air as a living, constantly moving, connecting medium, which enters one body and then reunites with the atmosphere, only to enter another body. As McNeley writes: According to the Navajo conception [. . .] Winds exist all around and within the individual, entering and departing through respiratory organs and whorls on the body’s surface. That which is within and that which surrounds one is all the same and it is holy.46 These examples from contemporary and historical cultural contexts draw attention away from the body as the site of the problem to the surrounding medium, the air, and suggest that more work outside a clinical context might be fruitful, to explore the perceptions of the air by aware breathers as well as by those who suffer breathlessness. The champion free-diver, Guillaume Néry, regularly experiences complete absence of the ability to breathe within the medium of water when he undertakes deep dives that expose him to carbon dioxide narcosis. This experience is powerfully portrayed in a film by Julie Gautier, in which Néry is seen descending into the darkness of the sea, propelling himself by a large seal-like flipper.47 As Néry descends, the viewer is overcome with a feeling of panic and fear that is felt physically as a breath-holding experience. The film portrays Néry’s hallucinatory experiences while in this breathless

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medium and this takes the viewers into a different mode of being, as we forget the need to hold our breath, until he starts to swim upwards again. These examples illustrate how culture can both portray and evoke experience, as it holds a wealth of sources that not only inform but also reflect how people experience breathlessness, both pathological and non-pathological. Understanding these sources, analysing them, and unpicking their connection to and impact on the clinic is the task of our ‘Life of Breath’ project. How might some of these ideas help us in this task? At the time of writing, our work is only just starting but initial interdisciplinary discussions are beginning to bear fruit, in particular regarding the need for non-narrative accounts of breathing and breathlessness, as these seem to be almost entirely missing from the cultural corpus. We now turn to a second case study illustrating critical medical humanities in action.

Bridging the Epistemic Gap 2: Visualising Breath At the core of the project is a research group: ‘Breathing Space’. This group includes academics from humanities and social science disciplines, as well as clinicians, health service researchers, artists and designers, and is run by a creative facilitator whose role is to ensure democracy and sharing of knowledge, skills and methods. The ‘space’ enabled by the meetings is intended to be creative: to enliven ideas in individuals and subgroups that may be taken forward to progress the aims of the project. A recent meeting (January 2015) gave rise to a potentially exciting idea. This meeting featured a talk by artist Jayne Wilton, whose work has focused on attempting to make breath visible.48 This talk, and our group reflection on how Jayne’s work might be not only aesthetically appreciated but also clinically useful, stimulated a design colleague, David Swann, to investigate whether it might be possible to use a breath visualisation technique in the clinic. The technique now investigated is the ‘shadowgraph’. This is a simple technique that does not require the use of irritants or toxic tracers or intense lighting to have its effects. Breath visualisation is achieved with the use of a spherical, concave, high-precision mirror with a relatively low-voltage white-light source and a high-speed digital camera. The person whose breath is visualised stands in front of the mirror and images are obtained when reflected light from the mirror is refracted to different degrees as it passes from the warmth of the mouth to the cooler surrounding air.49 The image that results looks like the surface of the moon, billowing out in particular patterns. Measurements can be made of the breath cloud relating to distance travelled, exhaled velocity, expansion rate and direction of flow. As Tang et al. discuss, it has been used largely to explore how far exhaled breath extends as a guide to aiding aerosol infection control.50 Such a technique has several potential applications. Primarily, it answers what seems, from the cultural references we have explored above, to be a desire to make visible what has been invisible, and to understand better the shape and form of breath in the air. People who experience breathing difficulties echo Michael Symmons Roberts’s character in Breath, remarking on the ways in which the ambient air, its texture and weight, affect their breathing.51 With this technique we might explore how the ability

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to see breath might help those with breathing difficulties to understand and articulate this relationship and explain it more clearly to their clinicians. It may also provide a new and non-invasive method for measuring breath, especially if particular patterns of the breath cloud relating to distinct conditions could be described. This thinking would not have been possible without the interdisciplinary aegis of our project. Testing its applicability and usefulness will require our clinical and artistic collaborators, working with a designer and medical humanities lead. The idea has the potential to influence patients, provide stimulus for discussion amongst our ‘aware breather’ cohorts, and engage the public who may learn from seeing their breath in action.

Conclusion This chapter opened by signposting the work we intend to carry out in the next five years. It is an invitation for the reader to reflect on and engage with the ideas presented here, which we will continue to develop. The principal idea of a critically engaged ‘helping’ medical humanities stands at the core of this chapter and our work. We see breath as a fruitful field of exploration, a domain where important areas of clinical need have been identified and which our fields can help answer. But this is only one part of the work to be done. We also hope to contribute in a variety of ways to understanding the phenomenology of the body and of breathing, and their exploration in art and culture. The question of what critical medical humanities may wish to achieve is partly a scholarly one, as this collection demonstrates, but we also maintain that it has an important ethical dimension. If the fields of medical humanities, humanities and social sciences have knowledge that may contribute to the care of breathless people, there seems to be a moral imperative to engage with clinicians and biomedical researchers on this topic. It is our goal to pursue ways of improving the understanding of breathlessness not only in our fields but also in the clinic.

Further Reading David Abram, The Spell of the Sensuous (London: Vintage Books, 1996). British Lung Foundation, Invisible Lives: Chronic Obstructive Pulmonary Disease (COPD) – Finding the Missing Millions (London: British Lung Foundation, 2007). Havi Carel, Illness (London: Routledge, 2013). Havi Carel, Phenomenology of Illness (Oxford: Oxford University Press, 2016). Steven Connor, The Matter of Air: Science and the Art of the Ethereal (London: Reaktion Books, 2010). Marjolein Gysels and Irene J. Higginson, ‘Access to Services for Patients with Chronic Obstructive Pulmonary Disease: The Invisibility of Breathlessness’, Journal of Pain and Symptom Management 36.5 (2008), pp. 451–60. Mari Herigstad, Anja Hayen, Katja Wiech and Kyle T. S. Pattinson, ‘Dyspnoea and the Brain’, Respiratory Medicine 105.6 (2011), pp. 809–17. Megan Wainright and Jane Macnaughton, ‘Is a Qualitative Perspective Missing from COPD Guidelines?’ Lancet Respiratory Medicine 1.6 (2013), pp. 441–2.

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Notes 1. The ‘Hearing the Voice’ project is based at Durham University and is an interdisciplinary exploration of the experience of hearing a voice in the absence of external stimuli. See (accessed 1 September 2014). 2. The ‘Life of Breath’ project is funded by the Wellcome Trust from 2014 to 2019, based at Durham and Bristol universities, and led by the authors. 3. Angela Woods, ‘The Limits of Narrative: Provocations for Medical Humanities’, Medical Humanities 37.2 (2011), pp. 73–8. 4. Ibid. 5. Anne Whitehead, ‘The Medical Humanities: a Literary Perspective’, in Victoria Bates, Alan Bleakley and Samuel Goodman (eds), Medicine, Health and the Arts: Approaches to the Medical Humanities (London: Routledge, 2014), pp. 107–27. 6. Daniel Fox, ‘Who We Are: The Political Origins of the Medical Humanities’, Theoretical Medicine 6 (1985) pp. 327–41 (p. 329). 7. Jane Macnaughton, ‘Medical Humanities Challenge To Medicine’, Journal of Evaluation in Clinical Practice 17 (2011), pp. 927–32. 8. Dermot Moran, ‘Edmund Husserl’s Phenomenology of Habituality and Habitus’, Journal of the British Society for Phenomenology 42.1 (2011), pp. 53–77 (p. 56). 9. Havi Carel and Ian James Kidd, ‘Epistemic injustice in healthcare: A philosophical analysis’, Medicine, Healthcare and Philosophy 17:4 (2014), pp. 529–40. DOI 10.1007/s11019014-9560-2. 10. William James, The Varieties of Religious Experience (London: Longmans Green and Co., 1929), p. 16. 11. Megan Wainright and Jane Macnaughton, ‘Is a Qualitative Perspective Missing from COPD Guidelines?’, Lancet Respiratory Medicine 1.6 (2013), pp. 441–2. 12. Charlotte A. Roberts, ‘A Bioarcheological Study of Maxillary Sinusitis’, American Journal of Physical Anthropology 133 (2007), pp. 792–807. 13. Peter J. Barnes and Sabine Kleinert, ‘COPD – A Neglected Disease’, Lancet 364 (2014), pp. 564–5. 14. British Lung Foundation, Invisible Lives: Chronic Obstructive Pulmonary Disease (COPD) – Finding the Missing Millions (London: British Lung Foundation, 2007), p. 3. 15. Marjolein Gysels and Irene J. Higginson, ‘Access to Services for Patients with Chronic Obstructive Pulmonary Disease: The Invisibility of Breathlessness’, Journal of Pain and Symptom Management 36.5 (2008), pp. 451–60. 16. Ibid., pp. 455–6. 17. Peter J. Barnes and Sabine Kleimert, ‘COPD – a neglected disease’, pp. 564–5. 18. Mark B. Parshall, Richard M. Schwartztein, Lewis Adams, Robert B. Banzett, Harold L. Manning, Jean Bourbeau, Peter M. Calverley, Audrey G. Gift, Andrew Harver, Suzanne C. Lareau, Donald A. Mahler, Paula M. Meek and Denis E. O’Donnell; on behalf of the ATS Committee on Dyspnea, ‘An Official American Thoracic Society Statement: Update on the Mechanisms, Assessment, and Management of Dyspnea’, American Journal of Respiratory and Critical Care Medicine 185.4 (2012), p. 445. 19. Miriam J. Johnson, David C. Currow and Sara Booth, ‘Prevalence and Assessment of Breathlessness in the Clinical Setting’, Expert Review of Respiratory Medicine 8.2 (2014), pp. 151–61. 20. Parshall et al., ‘An Official American Thoracic Society Statement’, pp. 435–52.

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21. Ibid., p. 444. 22. Mari Herigstad, Anja Hayen, Katja Wiech and Kyle T. S. Pattinson, ‘Dyspnoea and the Brain’, Respiratory Medicine 105.6 (2011), pp. 809–17 (p. 810). 23. Ibid., p. 810. 24. Ibid., p. 813. 25. Claudine Peiffer, ‘Dyspnea Relief: More Than Just the Perception of a Decrease in Dyspnea’, Respiratory Physiology and Neurobiology 167 (2009), pp. 61–71. 26. Herigstad et al., ‘Dyspnoea and the Brain’, p. 814. 27. Parshall et al., ‘An Official American Thoracic Society Statement’, p. 445. 28. Herigstad et al., ‘Dyspnoea and the Brain’, p. 811. 29. Robert W. Lansing, Richard H. Gracely and Robert B. Banzett, ‘The Multiple Dimensions of Dyspnea: Review and Hypotheses’, Respiratory Physiology and Neurobiology 167 (2009), pp. 53–60. 30. Ibid., p. 62. 31. Havi Carel, Illness (London: Routledge, 2013). 32. Ibid. See also Phenomenology of Illness (Oxford: Oxford University Press, 2016). 33. Steven Connor, The Matter of Air: Science and the Art of the Ethereal (London: Reaktion Books, 2010), p. 17. 34. Davina Quinlivan, The Place of Breath in Cinema (Edinburgh: Edinburgh University Press, 2012), p. 1. 35. Ibid., pp. 4–5. 36. Ibid., p. 2. 37. David Abram, The Spell of the Sensuous (London: Vintage Books, 1996). 38. Ibid., pp. 233–4. 39. Aristotle, On the Soul, Parva Naturalia, On Breath, trans. W. S. Hett (London: Heinemann, 1957), p. 439. 40. Abram, The Spell of the Sensuous, pp. 237–8. 41. Simone Denis, ‘Smoking Causes Creative Responses: On State Antismoking Policy and Resilient Habits’, Critical Public Health 21.1 (2011), pp. 25–35. 42. Brian Lande, ‘Breathing like a Soldier: Culture Incarnate’, Sociological Review 55 (s1) (2007), pp. 95–108 (p. 97). 43. Herigstad et al., ‘Dyspnoea and the Brain’, p. 810. 44. Michael Symmons Roberts, Breath (London: Vintage Books, 2009), p. 103. 45. Dr Who: Deep Breath, television, produced and written by Steven Moffat. UK: BBC Television, first broadcast 23 August 2014. 46. McNeley, cited in Abram, The Spell of the Sensuous, p. 233. 47. Narcose, film, directed by Julie Gautier (accessed 7 September 2014). 48. Jayne Wilton, Breathe and Drawing Breath (accessed 16 March 2015). 49. Julian W. Tang, Andrew Nicolle, Jocan Panetelic, Gerald C. Koh, Liang De Wang, Muhammad Amin, Christian A. Klettner, David K. W. Cheong, Chandra Sekhar, Kwok Wai Tham, ‘Airflow Dynamics of Coughing in Healthy Human Volunteers by Shadowgraph Imaging: an Aid to Aerosol Infection Control’, PLoS ONE 7.4 (2012), e34818. 50. Ibid. 51. Content of discussion with a member of the British Lung Foundation’s ‘Breathe Easy’ Group (local group in North-east of England, March 2015).

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17 MORPHOLOGICAL FREEDOM AND MEDICINE: CONSTRUCTING THE POSTHUMAN BODY Luna Dolezal

Introduction he notion that the body can be changed at will in order to meet the desires and designs of its ‘owner’ is one that has captured the popular imagination and underpins contemporary medical practices such as cosmetic surgery and gender reassignment. In fact, describing the body as ‘malleable’ or ‘plastic’ has entered common parlance and dictates common-sense ideas of how we understand the human body in late-capitalist consumer societies in the wake of commercial biotechnologies that work to modify the body aesthetically and otherwise. If we are not satisfied with some aspect of our physicality – in terms of health, function or aesthetics – we can engage with a whole variety of self-care body practices – fashion, diet, exercise, cosmetics, medicine, surgery, laser – in order to ‘correct’, reshape or restyle the body. In addition, as technology has advanced and elective cosmetic surgery has unapologetically entered the mainstream, the notion of the malleable body has become intrinsically linked to the practices and discourses of biomedicine and, furthermore, has become a significant means to assert and affirm identity. Underpinning discussions and practices about modifying the human body through medical and biotechnological interventions is the philosophical concept of morphological freedom, an idea central to the discourses of transhumanism, some branches of posthumanism, body- or bio-hackers, and the practices of some pioneering experimental performance artists who endorse experimentation with biotechnologies in order to augment, modify or enhance the human body. However, beyond these fringe movements, the idea of morphological freedom has entered the mainstream and circulates liberally, both explicitly and implicitly, when talking about modifying the human body outside of therapeutic or health-related interventions. In this chapter, I will explore the concept of morphological freedom in order to see if it is a viable concept when considering embodied experience and within medical practice. Although there are many important philosophical questions regarding the body, identity, autonomy and self-ownership at stake when considering the idea of morphological freedom, the primary focus of this chapter will be to explore the sociocultural landscape within which

T

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biomedicine and the so-called ‘malleable body’ come together. In doing so, I will provide a genealogy of morphological freedom, examining its origins within the social and philosophical movement of transhumanism while linking it to broader ideological forces that circulate in our technology-saturated late-capitalist consumer culture. To consider the fleshy limits of morphological freedom, I will turn to examine the pioneering work of the performance artists ORLAN and Stelarc, both of whom explicitly engage with morphological freedom conceptually and performatively through utilising elective surgery as part of their art practice.

A Genealogy of Morphological Freedom To illustrate morphological freedom, I will quote at length from a posting on the Reddit Futurology online discussion board.1 It describes the significant distress that a self-identified trans woman feels with respect to the contours of her body. I offer the post not to make any commentary or judgement on the legitimacy of her distress or desires, though I hope I remain sensitive to them, but instead to use this post and the comments that follow to illustrate some mainstream ideas about body malleability and beliefs regarding the potential that science, medicine and technology hold in terms of modifying the human body. On 8 February 2014, MissKaioshin posts: Hello, I’m 30 years old and a trans woman . . . My dream is to transform my physical body to something much closer to my ideal. I want to be curvy, pretty, voluptuous, etc. I want to have nice wide hips, narrow waist, slender shoulders, big round butt, shapely legs, and so on. Right now I’m pretty far off the mark, and although I could go through with sexual-reassignment surgery, hormone-replace therapy [sic], facial feminization surgery, voice training, etc., I feel I’d still fall far short of how I want to look. . . . Do you guys think that technology will develop to a point where I can have what I want, within my lifetime? . . . I want to change my morphology, my anatomy, my physiology, even my genome if need be. Is it possible that in my lifetime I’ll have a chance to change my body and be pretty? Thanks in advance! In response, Blinkergoesleft posts: There will come a time when any type of body mod will be possible. Sex changes will be common, and you’ll be able to switch back if you get bored . . . iLikeYaAndiWantYa posts: According to some futurist[s] e.g. Ray Kurzweil, medicine will advance within the next 30 years to allow us to effectively live forever and reverse aging. And by 2070s, we should be able . . . [to] change our appearance completely (to non human forms even). So if you choose to believe him, you will be able to be young and ‘beautiful’ soon enough, e.g., within 30 years.

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This discussion board thread continues at length and is an interesting insight into contemporary ideas regarding what is concretely possible for the human body. These ideas are infused with realities that in the present day belong exclusively to the realm of speculative fiction (practices such as cloning, uploading, full body metamorphoses and so on), but are purported to be just around the corner if we follow the ideas of futurists like Ray Kurzweil.2 What these online comments illustrate is a conviction in morphological freedom, the idea not only that is the human body malleable and plastic, but furthermore that we have the freedom and autonomy to change our bodies according to our desires and designs. Morphological freedom was introduced into mainstream discourse through transhumanism, an intellectual and social movement that is driven by the belief that the human race can utilise science and technology in order to evolve beyond its current ‘limitations’, ‘overcoming aging, cognitive shortcomings, involuntary suffering, and [ultimately] our confinement to planet Earth’.3 The Transhumanist FAQ, version 2.1, which summarises the movement’s values and acts as a manifesto of sorts, declares that transhumanism ‘affirms the possibility and desirability of fundamentally improving the human condition . . . especially by developing and making widely available technologies to eliminate aging and to greatly enhance human intellectual, physical and psychological capacities’.4 In a 1993 paper, Max More, a prominent transhumanist philosopher, futurist and the current president of the Alcor Life Extension Foundation, defines morphological freedom as: ‘The ability to alter bodily form at will through technologies such as surgery, genetic engineering, nanotechnology, uploading’, connoting an inherent fluidity or freedom of bodily form.5 The idea was developed further in a lecture given in Berlin in 2001 by Anders Sandberg, an outspoken transhumanist and academic at the Future of Humanity Institute at Oxford University. Morphological freedom, Sandberg argues, is not just about plasticity of the physical body, but should be understood as a basic human right, the term ‘freedom’ connoting autonomy or liberty. Morphological freedom, he argues, is the ‘right to modify one’s own body’ in the pursuit of ‘happiness’, ‘human flourishing’ and ‘self-actualization’.6 Underpinned by the liberal humanist idea of the individual subject being characterised by selfownership and self-determination, and a concomitant obligation to self-actualisation, the concept of morphological freedom places the body at the centre of personal autonomy. Freedom is not just freedom of expression but, significantly, freedom of transformation. Hence the concept of morphological freedom connotes both the body’s inherent plasticity and, more centrally, one’s individual autonomy when it comes to making choices about modifying, enhancing or altering one’s own body. While posthumanism is distinct from transhumanism and is a term that connotes a variety of philosophical and social positions, one strand of the posthuman aligns strongly with the transhumanist position: seeing the human body as intrinsically relational to technology, machines and other organic forms. The posthuman in this reading is an ‘ontological condition’ that connotes the fact that many humans will increasingly live with chemically, surgically or biotechnologically modified bodies.7 Engaging in the ‘radical enhancements’ that the transhumanists propose will, arguably, transform

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us into fundamentally different kinds of beings, no longer strictly human; we will become ‘posthuman’.8 The rally by transhumanists and posthumanists (understood in this sense) for morphological freedom arises because of a general reluctance, or bioconservatism, on the part of medical professionals to endorse human experimentation with enhancement technologies. In 2003, the US President’s Council on Bioethics examined enhancement technologies in its report Beyond Therapy: Biotechnology and the Pursuit of Happiness and ultimately conveyed a ‘cautionary note’ in its ‘concern’ regarding biomedical progress.9 Enhancement is described in this report as ‘the directed use of biotechnological power to alter, by direct intervention not disease processes but the “normal” workings of the human body and psyche, to augment or improve their native capacities and performances’.10 Despite this definition, the report makes clear that it is, in fact, difficult to determine useful criteria from which to characterise what constitutes an enhancement, as the category of ‘normal’ is hugely contested and unstable.11 However, ‘enhancement’ is usually pitted against ‘treatment’ or ‘therapy’, and human enhancements are commonly classified as ‘medical interventions that do not attempt to cure’.12 The distinction between ‘enhancement’ and ‘therapy’ or ‘treatment’ is, of course, central to medical practice and provides a moral and regulatory means to assess which biotechnologies should be permitted, discouraged or banned.13 The general sentiment among bioethicists here can be summed up as, ‘therapy is always ethically fine, enhancement is, at least prima facie, ethically suspect’.14 Essentially, the transformative potential of an enhancement technology is outweighed by concerns about uncertainty (a lack of knowledge about the range of possible outcomes), ambiguity (the variable value given to the outcomes of certain biotechnologies in different contexts) and the levels of care owed by the state to its citizens (when considering publically funded healthcare).15 Based on this reasoning, regulatory bodies have significantly restricted morphological freedom, putting strict limitations on human experiments regarding the use of genetic technologies, nanotechnologies, cognitive enhancers, surgical interventions and other potential enhancement procedures. In the context of this strict regulatory climate, some transhumanists have argued for the notion of enhancement to be detached from the ‘beyond therapy’ characterisation, calling for enhancements to be viewed as ‘technological interventions that have the potential to improve the life of the modified’ rather than something to be merely pitted against a notion of ‘therapy’.16 Beyond giving enhancement a more ‘positive characterization’,17 this approach intrinsically ties enhancement to the Enlightenment ideology of self-actualisation. Under this line of reasoning, transhumanists argue that morphological freedom must be elevated to a basic human right,18 as without the right to experiment with enhancement technologies, human beings may not discover enhanced or improved states of being that are currently unimaginable as a result of the ‘limitations’ of our current physical, psychological and cognitive functioning. This has been termed the ‘Chimpanzee Challenge’.19 Nick Bostrom remarks: ‘Just as chimpanzees lack the brainpower to understand what it is like to be human, so too do we lack the practical ability to form a realistic understanding of what it would be

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like to be post-human.’20 Bostrom labours this point in his seminal article ‘Why I Want to be a Posthuman When I Grow Up’, arguing that our current capacities stop us from imagining what our experience of enhanced cognitive or physical functioning would be like.21 This inability to imagine the experience of increased lifespan, augmented cognitive function and other biotechnological interventions should not, however, inhibit our commitment to develop our posthuman potential. Thinkers like Bostrom argue that we need morphological freedom, or the right to experiment with modifications and enhancements to the physical body – a ‘flawed piece of engineering’22 – in order to develop ‘humanity’s potential’, which is ‘mostly unrealized’.23 Despite the stated difficulties inherent in the Chimpanzee Challenge, Bostrom speculates on what a desirable posthuman existence might hold, offering a vignette to illustrate some possibilities: you feel stronger, more energetic, more balanced. Your skin looks younger and is more elastic . . . You can follow lines of thinking and intricate argumentation farther without losing your foothold . . . You are able to sprinkle your conversation with witty remarks and poignant anecdotes. Your friends remark on how much more fun you are to be around . . . You continue to find the gossip magazines you used to read amusing . . . but you discover that you can get more out of reading Proust and Nature. Instead of . . . watching television, you may now prefer to play the saxophone in a jazz band and to have fun working on your first novel. Instead of spending the weekends hanging out in the pub . . . talking about football, you acquire new friends with whom you can discuss things that now seem to be of greater significance than sport . . . By any reasonable criteria, your life improves as you take these initial steps towards becoming posthuman.24 Bostrom’s notion of what constitutes ‘reasonable criteria’ to judge the quality of life that is manifested in his posthuman imagining is, of course, loaded with the implicit biases of a white, Western, educated, middle-class Oxford academic; it is easy to disparage the elitist and classist implications in his comments regarding what constitutes an ‘enhancement’ in one’s reading material, leisure activities and conversational topics. Leaving those concerns aside, what this passage illustrates are the broader ideological parallels in the transhumanist and posthumanist discourses to what social theorists, such as Anthony Elliott, have called the contemporary ‘culture of reinvention’.25 This cultural paradigm has emerged in the twenty-first century as a result of a confluence of various institutional, social and political forces. Otherwise characterised as ‘makeover culture’,26 this ideological paradigm promotes a rhetoric of continuous self-improvement where individuals are compelled (or even coerced) to improve and transform themselves ceaselessly. Although the culture of self-improvement affects all aspects of life – we ‘make over’ everything from houses to cars, kitchens, wardrobes and diets – self-improvement and reinvention centre on the body in a significant way. Furthermore, reinvention culture has come to lean heavily on biomedicine. Reflexive self-improvement ‘body projects’27 increasingly play out within a medicalised context and employ a medical and scientific discourse in their implantation and justification.

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One need only think of the recent dramatic rise in cosmetic surgery, or the explosion in digital ‘wearables’ and self-tracking technologies, or the now commonplace use of a medical aesthetic in the sale and implementation of cosmetic products.28 The development of this way of thinking about the body arises as a result of a complex confluence of social, political and economic forces traversing cultural practices, ideologies and institutions across several decades. However, the very possibility of morphological freedom is underpinned by at least three distinct ideological shifts within medical discourse, arising in the post-World War II period, which concretely impacted on conceptions of the human body and identity. These shifts, which can be broadly characterised as the rise of lifestyle medicine, the rise of medical consumerism, and the vision of medicine as ‘progress without conflict’,29 are intrinsically tied to the liberal and, later, neoliberal economic value systems that position human capital – the efficient, able-bodied, healthy worker and consumer – at the centre of the capitalist machinery. Following the core ideologies of contemporary neoliberalism – capital acquisition, private property, commodification, freedom and the eternal growth of the free market30 – not only have biomedicine and its outputs become increasingly commodified, privatised and profit-driven, but these values have also been transposed on to the bodies that it services. The body is a commodity; it is one’s private property; one has the freedom and indeed responsibility to have the body serviced, maintained, made over or improved in order to augment one’s ‘body capital’.31 Key to this is the systematic lynchpin of neoliberal consumerism: needs can never be fulfilled; markets must continually grow; satisfaction must be constantly deferred. As a result, caught up both in the net of the free market and in the firm grip of biomedicine, the body remains perpetually flawed and inadequate. The endless consumption of medical (or medicalised) goods and services is needed in order for self-actualisation – or market success – to be realised. To this end, new procedures, products and services are incessantly invented. Hence, on the back of the discourses of biomedicine and neoliberalism, which have become intrinsically intertwined in recent decades, the contemporary conception of the body – as an article of private property that should be endlessly ‘improved’, ‘enhanced’ and reworked’ through engaging in medical (and medicalised) practices – has emerged. The imperative for continuous reinvention in the contemporary self-improvement practices that Anthony Elliott analyses in his work on reinvention culture – most of which have become medicalised and employ a scientific discourse in their implementation – is, he argues, ‘inextricably interwoven with the lure of the next frontier, the break through to the next boundary, especially the boundaries of the self’.32 In fact, arguments for achieving a better ‘future self’ proliferate liberally in the discourses of contemporary reinvention practices that focus on the body, and the collective aims of movements such as transhumanism and posthumanism seem to be of the same order as the individualistic concerns of beauty or grooming practices such as dieting and cosmetic surgery. In parallel to transhumanism, the discourse surrounding cosmetic surgery practices rests centrally on the idea that having autonomy to change the body is a means to ‘human flourishing’ and ‘happiness’, alleviating psychological dissatisfaction

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while augmenting one’s experience and life chances.33 Through engaging in reinvention practices, one may become, in striking parallel to the values implicitly espoused in Bostrom’s vignette about the possibilities for posthuman existence, more productive, healthy, popular, attractive, intelligent, culture-savvy and so on. Cosmetic surgeon Joe Rosen, interviewed for Harper’s Magazine, makes these comments: ‘People say, cosmetic surgery is frivolous – boobs and noses. But it’s so much more than that! The body is the conduit for the soul, at least historically speaking. When you change what you look like, you change who you are.’ He continues: ‘Plastic surgery is the intersection of art and science. It’s the intersection of the surgeon’s imagination with human flesh. And human flesh is infinitely malleable.’34 Beyond his day job as a cosmetic and plastic surgeon, Dr Rosen is an outspoken proponent of the posthuman potential of surgical interventions. He has designed wings for humans (fashioned out of rib bone and torso fat) and cochlear implants and echolocation devices to enhance human hearing and night-time navigation. His belief in the endless malleability of the body permeates his ideas about cosmetic surgery: rhinoplasty has not reached its real potential. Why just change the nose? Why not change the gene for the nose, so that subsequent generations will benefit from the surgery. Plastic surgery, in the future, can be about more than the literal body. It can be about sculpting the genotype as well.35 Journalist Morag McKinnon, writing about cosmetic surgery in the UK, notes that more than a quarter of all women seeking surgery are under twenty-five. From her interviews with these young women, who comprise what she calls ‘the plastic generation’, she notes that they hold an unfaltering belief in morphological freedom, both in terms of their perception of the endless malleability of the body and also in terms of possessing the right to access the technologies for physical change: ‘the body can be shaped and remoulded over and over again, regardless of the price (both financial, mental and physical)’.36 The popular sentiment about the malleability of the body echoes a claim made recently by the theorist Margrit Shildrick in a discussion about bodily boundaries and technology within medical contexts. Shildrick writes: ‘what cannot now be covered over is the insight that the human body can be manipulated, extended or substituted seemingly without limits.’37 The malleability or plasticity of the body is, of course, central to the notion of morphological freedom, the idea being that if the body can be transformed or modified, we should not be prevented from doing so if this will ‘improve’ or ‘enhance’ our lived experiences. However, as all elective medical interventions such as cosmetic surgery and the enhancement procedures imagined by transhumanist and posthumanist thinkers are, for the most part, commercial practices that rely on a certain level of social capital or economic solvency, morphological freedom becomes inextricably bound to the right to make particular consumer choices within a medical context. In fact, as noted above, morphological freedom rests heavily on what David Serlin identifies as the rise of ‘medical consumerism’ in the post-World War II period. During this time, he argues, medicine became positioned as ‘a tool of self-realization’.38 Procedures and

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treatments ‘previously associated with emergency medicine or with elite society’ were transformed, Serlin argues, ‘into panaceas for those looking to rehabilitate their identities along with their bodies’.39 Having the autonomy to change one’s identity through improvements or changes to the body became conflated with having the freedom to engage the services of medical professionals, and this is the logic that has permeated not only contemporary reinvention culture but also the ideas of futurist philosophers within the transhumanist and posthumanist movements. As such, morphological freedom, as theorised by transhumanist thinkers and posthuman body practitioners, is tightly linked to a specialised type of medical consumerism, or the idea that we should have a medical marketplace where one can demand surgical and other interventions. This, of course, gives rise to concerns about inequalities with respect to the availability of certain medical practices for free consumption. Despite a lot of talk about the importance of morphological freedom and the potential of enhancement biotechnologies, there are few examples of academic transhumanists that are actually engaged in practices to augment their physical functioning.40 To obtain a sense of what morphological freedom actually means in practice and what the concrete possibilities for enhancement through physical interventions actually hold, one must look to fringe figures, such as experimental performance artists, who modify their bodies through elective surgery as part of their art practice, or body-hackers, who perform amateur self-surgeries in order to enhance sensory experience through implanting magnets, computer chips and other devices under the skin. In stark contrast to the highly normalised interventions of cosmetic surgery practices, these individuals are pushing the boundaries of what is acceptable and possible in terms of modifying the human body, arguably exercising their morphological freedom in the sense promoted by transhumanist thinkers. Furthermore, the work of radical body artists acts as an interesting provocation, raising important questions concerning the role of medicine and the limits of acceptable medical practice.41 Hence, in order to explore the limits of morphological freedom in practice, in the next section I will turn specifically to discuss the work of two performance artists, ORLAN and Stelarc, who explicitly engage with the concept of morphological freedom as part of their art practice, employing biotechnologies and elective surgeries to modify their bodies.

Morphological Freedom in Practice: The Limits of the Flesh Avant-garde and experimental performance art creates a site where artists use their own bodies as a means to investigate, critique and explore the limits and conventions of the human body and the social practices surrounding it. Experimental art is an ideal breeding ground for posthuman experimentation under the rubric of morphological freedom, as it is a terrain outside of the realm of fixed social conventions where, according to Jane Goodall, ‘the rules are unknown because they are yet to be made.’42 Lucian Gomoli has employed the term ‘posthuman performance’ to discuss experimental artistic practice that uses the body as a critical framework.43 Posthuman performance,

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Gomoli argues, is an important form of interventionism that rejects any ‘stable notion of the human’ and which can ‘allow for new forms of relating’.44 Through posthuman performance, real human bodies provide an important site of cultural critique while pushing the limits of what is concretely possible in terms of modifying the human body, particularly when considering the complex relationships between the body, culture, aesthetics, medicine and technology. The French artist ORLAN is one of the cases that Gomoli cites as exemplary of posthuman performance. ORLAN is perhaps best known for her project The Reincarnation of Saint-Orlan, which started in 1987 and involved a series of nine plastic surgery procedures performed over several years in order to transform her face into a computer-synthesised ‘ideal’ self-portrait, an amalgamation of features from famous Classical paintings and sculptures by male artists (the chin of Botticelli’s Venus, the nose of Gérard’s Psyche, the lips of Boucher’s Europa, the eyes of the Fontainebleau Diana, and the forehead of Da Vinci’s Mona Lisa). The seventh operation, the first in the Omnipresence series, was televised live in galleries around the world. ORLAN’S intention with The Reincarnation of Saint-Orlan, as she states, was to question ‘the status of the body in our society and its future . . . in terms of the new technologies’.45 ORLAN did not intend to improve her body through the use of cosmetic surgery, but rather ‘to transform it so as to experience its difference, to desacralise Western medicine, and to critique our standards of beauty rather than perpetuate them’.46 ORLAN’s daring ‘carnal art’ is conceptually underpinned by the malleable body – or a conceptual commitment to the plasticity of the body: the notion that human flesh can be sculpted and moulded, like a work of art.47 Beyond provoking reflection regarding the limits of the human body, ORLAN’s work also interrogates medical practice and the relationship between the artist (as patient) and her medical attendees, raising questions about the role of medicine and the normative and practical limits of medical consumerism.48 ORLAN has written explicitly about her difficulty locating a female surgeon who was willing to participate in her performance art series.49 Once she had eventually secured a surgeon, ORLAN’s seventh surgical ‘operation–performance’ was filmed in New York and is a precursor to the now commonplace depictions of operating theatres and graphic surgeries on reality television programmes such as Extreme Makeover or The Swan. The performances are graphic and bloody; ORLAN’s flesh is surgically altered while she remains awake and detached, the centre of a colourful spectacle depicting what Rachel Armstrong has termed ‘medical chaos’.50 Armstrong, a medical doctor who became ORLAN’s medical advisor and friend, describes one of the performances as follows: ‘surgeons . . . running around in designer garments, while performance artists and a deaf-and-dumb linguist made hand gestures behind her . . . [while] ORLAN somberly read from philosophical texts and answered faxed questions’.51 In fact, ORLAN’s performances offer an explicit commentary on the notion of morphological freedom – both in terms of the dualistic ideas that underpin the malleability of the flesh, and in terms of her irreverent portrayals of medical consumerism and contemporary reinvention culture. Armstrong writes:

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ORLAN’s portrait was shocking because she had opened the door to a world where medical care could be specifically customized to meet a single patient’s every need, provided the funding was secured . . . the clinicians and theatre staff bowed to the whims of the patient/diva . . . ORLAN had accomplished a coup d’état of the surgical theatre. ORLAN wanted flowers in the operating theatre, she got them! ORLAN wanted photographs to be taken, no problem! ORLAN wanted to wear lipstick, of course! ORLAN wanted music of a particular kind to be played and her wish was granted! Most triumphantly of all, ORLAN had persuaded the surgeon to make her face and her body change to suit her own particular design . . . This operation/performance was the beginning of a new phenomenon in medicine: designer anatomy.52 The Reincarnation of Saint-Orlan project was to culminate in a final operation before the year 2000. ORLAN was to have her nose extended in a triumphant rhinoplasty procedure. It was to be the largest nose possible, protruding at least an inch further than her natural nose. In discussion with an orthodontic surgeon and an expert in facial aesthetics, ORLAN’s morphological freedom met its (perhaps) inevitable limitations, both in terms of what her flesh would support and what the medical establishment would reasonably attempt. Armstrong writes, ‘Enlarging the nose would involve months of preparation in skin stretching, grafts of bone and tissue, and extensive remodelling . . . I began to doubt her chances of healing fully without succumbing to bone infections or sepsis.’53 Armstrong quotes at length the concerns of the orthodontic surgeon: ‘She will be left with continuous bleeding from her nose; recurrent infections, thin skin and voice change. Besides, I don’t know anyone in this country that would touch this project, from a professional perspective.’54 This last comment reveals not only the fleshy limits of morphological freedom, exposing the ‘fantasy of the malleable body’, but also the enduring bioethical constraints of the medical marketplace.55 Often compared to ORLAN, the Australian performance artist Stelarc also uses his own body as a vehicle for his art practice in order to destabilise conventional ideas of the limits of the ‘human’ and explicitly to explore ideas of the posthuman. He is well known for his works, such as Third Hand and Exoskeleton, where he utilises sophisticated technology in order to experiment with telepresence and prosthetics, and to highlight issues around agency, control and bodily boundaries when considering the infiltration of technology in contemporary life. His recent Ear on Arm project is perhaps his most radical work with the body. In this project, Stelarc had a third ear grown in a laboratory and subsequently implanted surgically into his left forearm, a refiguring of the disturbing images that appeared in the media in late 1995 of the thenrecent biotechnological experiment of the Vacanti mouse: an emaciated rodent with what appeared to be a human ear growing atop its back. Three surgeries are planned to complete the implanted ear, including injecting stem cells into the ear scaffold in order to grow better definition. Eventually, a miniature microphone will be implanted into the third ear, connected to a wireless transmitter, in order to transmit digitally what this ear ‘hears’, making the ear a remote listening device for people tuning in

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over the internet.56 It is a pioneering experiment in performance art, and it took Stelarc over ten years to track down three surgeons who were willing to perform the highly experimental surgery and, ultimately, the procedures were funded by the US Discovery documentary series ‘Medical Mavericks’.57 This, of course, raises interesting questions about medical consumerism in the context of voyeuristic reinvention culture where a plethora of reality television shows employ medical procedures and bodily transformation as a central trope. Similar to ORLAN, the imaginings for Stelarc’s bodily metamorphosis were severely limited by the realities of the flesh. Stelarc notes, in stark contrast to Dr Rosen’s comments above, ‘The body is a living system which isn’t easy to surgically sculpt.’58 In discussing the physical complications arising from the medical procedures, Stelarc remarks, There were several serious problems that occurred: a necrosis during the skin expansion process necessitated excising it and rotating the position of the ear around the arm . . . The infection caused by the implanted microphone several weeks later proved too serious and heroic efforts were undertaken to save the scaffold.59 The project – after several successive surgeries and a six-month dose of strong antibiotics – remains unfinished. It is clear that there is a marked divergence from the fleshy limits that ORLAN and Stelarc have faced in their recent performance practice to the hopeful discussion board comments that opened this chapter. We are, it seems, a long way off from the sort of limitless bodily malleability imagined by MissKaioshin, Dr Rosen, Margrit Shildrick and transhumanist thinkers. In fact, while the artistic provocations of Stelarc and ORLAN contribute to the cultural imagination of transhuman and posthuman bodies as enabled through technology and biomedicine, Goodall makes the important point that their actual fleshy performances may have the opposite effect in proving how difficult, painful and sometimes impossible it is to embody these fantasies in practice.60 It seems that Elizabeth Grosz’s remark, in her 1994 work Volatile Bodies, that the ‘body is not open to all the whims, wishes, and hopes of the subject’, is still valid over two decades on, despite the vast developments in surgical procedures, genetics, biotechnologies and pharmaceuticals.61 In short, it seems that there are still significant limits to how much flesh can be modified and, leaving aside bioethical concerns about what constitutes proper medical practice, we simply do not have complete morphological freedom; there are (perhaps inevitable) limits regarding to what extent the human body can be transformed.

Conclusion The work of radical body artists such as ORLAN and Stelarc acts as an important provocation when considering morphological freedom, both as a concept and in practice. These artists push the frontiers of bodily plasticity while testing the boundaries of consumer medicine, demonstrating the concrete limits of what is

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possible and permissible when it comes to modifying human flesh. The restrictions of the body that constrain the artwork of both ORLAN and Stelarc demonstrate that the infinitely plastic or malleable body is, in practice, a ‘fantasy’. Furthermore, through their work they reveal the central philosophical paradox in the concept of morphological freedom. This is the tension that underpins the idea of the autonomous, self-contained neoliberal subject in the first place, from which the transhumanist position arises.62 In short, through creating a distance between consciousness and the flesh, in order to transform it, the idea of morphological freedom disavows the body while simultaneously reaffirming its central place in identity. In other words, the body is, on the one hand, denied as central to the self – it is conceived of as an article of private property that can be strategically ‘reinvented’, modified or enhanced while the inner self remains intact. However, at the same time, the body is contradictorily positioned as intrinsically tied to one’s core identity – through changing the body, one can improve oneself through enhancement. As a result, there is a significant gap between the transhumanist and futurist imaginary of morphological freedom, as articulated in MissKaioshin’s comments, which opened this chapter, and its concrete realisation through surgical, chemical and other interventions, as demonstrated by ORLAN and Stelarc. Like the beforeand-after photo set, a common trope in consumerist self-improvement practices,63 what is occluded in the transhumanist discourse and mainstream representations of reinvention and self-transformation is the mess in the middle: the significant physical and existential toll that self-transformation within a medical context can entail. While biotechnologies continue to develop under the paradigm of consumer medicine, informed by the fantasy of the malleable body, the critical medical humanities have an important role to play. Through excavating and examining the inherited, sedimented and taken-for-granted assumptions that frame or inform medical or medicalised practices – and, of course, the human body that is at their centre – critical medical humanities through art, philosophy and history, among other disciplines, can make important interventions. In the case of morphological freedom, critically examining our biotechnology-enamoured cultural landscape, along with the neoliberal logic that frames human bodies, is a crucial theoretical intervention that could yield a richer and more just means to negotiate how to develop the policy, practices and procedures that govern enhancement and self-improvement practices that attempt to construct the posthuman body through medicine.

Acknowledgements I gratefully acknowledge my postdoctoral funding from the Irish Research Council and my residency at the Brocher Foundation, Switzerland, both of which made the writing of this chapter possible.

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Further Reading Nicholas Agar, Humanity’s End: Why We Should Reject Radical Enhancement (Cambridge, MA: MIT Press, 2010). Rosi Braidotti, The Posthuman (Cambridge: Polity Press, 2013). Allen Buchanan, Better Than Human: The Promise and Perils of Enhancing Ourselves (Oxford: Oxford University Press, 2011). Ray Kurzweil, The Singularity is Near: When Humans Transcend Biology (New York: Penguin, 2005). Pete Moore, Enhancing Me: The Hope and the Hype of Human Enhancement (Chichester: John Wiley & Sons, 2008). Max More and Natasha Vita-More (eds), The Transhumanist Reader: Classical and Contemporary Essays on the Science, Technology and Philosophy of the Human Future (Oxford: Wiley–Blackwell, 2013). David Roden, Posthuman Life: Philosophy at the Edge of the Human (London: Routledge, 2015). Joanna Zylinska (ed.), The Cyborg Experiments: The Extensions of the Body in the Media Age (London: Continuum, 2002).

Notes 1. The Reddit Futurology discussion board is an online community devoted to the field of Future(s) Studies and evidence-based speculation about the development of humanity, technology and civilisation (accessed 30 March 2015). 2. Ray Kurzweil, The Singularity is Near: When Humans Transcend Biology (New York: Penguin, 2005). 3. ‘Transhumanist Declaration (2012)’, in Max More and Natasha Vita-More (eds), The Transhumanist Reader: Classic and Contemporary Essays on the Science, Technology and Philosophy of the Human Future (Oxford: Wiley–Blackwell, 2013), p. 54. 4. Nick Bostrom, ‘Transhumanist F.A.Q.: A General Introduction, Version 2.1 – World Transhumanist Association’ (2003), p. 4 (accessed 30 March 2015). 5. Max More, ‘Technological Self-Transformation: Expanding Personal Extropy’, Extropy 10.4/2 (1993), p. 24. 6. Anders Sandberg, ‘Morphological Freedom – Why We Not Just Want It, but Need It’, in More and Vita-More (eds), The Transhumanist Reader, pp. 57, 56, 58. 7. Pramod K. Nayar, Posthumanism (Cambridge: Polity Press, 2014), p. 3. 8. Nicholas Agar, Humanity’s End: Why We Should Reject Radical Enhancement (Cambridge, MA: MIT Press, 2010), p. 2. 9. The President’s Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of Happiness, a Report of the President’s Council on Bioethics (2003) (accessed 31 May 2015), p. 24. 10. Ibid., p. 13. 11. Isabel Karpin and Roxanne Mykitiuk, ‘Going Out on a Limb: Prosthetics, Normalcy and Disputing the Therapy/Enhancement Distinction’, Medical Law Review 16 (2008), p. 414.

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12. Johann A. R. Roduit, Vincent Menuz and Holger Baumann, ‘Human Enhancement: Living up to the Ideal Human’, in Stephen John Thomson (ed.), Global Issues and Ethical Concerns in Human Enhancement Technologies (Hershey, PA: IGI Global, 2014), p. 55. 13. Karpin and Mykitiuk, ‘Going Out on a Limb’, p. 413. 14. The President’s Council on Bioethics, Beyond Therapy, pp. 13–14. 15. Nuffield Council on Bioethics: Emerging Biotechnologies: Technology, Choice and the Public Good, a Guide to the Report (London: Nuffield Council on Bioethics, 2012), p. 5. 16. Roduit et al., ‘Human Enhancement’, p. 56. 17. Ibid. 18. ‘Transhumanist Declaration (2012)’. 19. Heather G. Bradshaw and Ruud Ter Meulen, ‘A Transhumanist Fault Line around Disability: Morphological Freedom and the Obligation to Enhance’, Journal of Medicine and Philosophy 35 (2010), p. 676. 20. Nick Bostrom, ‘Human Genetic Enhancements: A Transhumanist Perspective’, Journal of Value Enquiry 37 (2003). 21. Nick Bostrom, ‘Why I Want To Be a Posthuman When I Grow Up’, in More and Vita-More (eds), The Transhumanist Reader. 22. Max More, ‘The Philosophy of Transhumanism’, The Transhumanist Reader, p. 15. 23. ‘Transhumanist Declaration (2012)’, p. 54. 24. Bostrom, ‘Why I Want To Be a Posthuman When I Grow Up’, pp. 31–2. 25. Anthony Elliott, Reinvention (London: Routledge, 2013), p. 4. 26. Meredith Jones, Skintight: An Anatomy of Cosmetic Surgery (London: A & C Black Publishers, 2008), p. 12. 27. Nick Crossley, Reflexive Embodiment in Contemporary Society (New York: Open University Press, 2006). 28. Eric J. Arnould and Elisabeth Tissier-Desbordes, ‘Hypermodernity and the New Millennium: Scientific Language as a Tool for Marketing Communications’, in Allan J. Kimmel (ed.), Marketing Communication: New Approaches, Technologies and Styles (Oxford: Oxford University Press, 2005). 29. David Serlin, Replaceable You: Engineering the Body in Postwar America (Chicago: University of Chicago Press, 2004), p. 4. 30. David Harvey, A Brief History of Neoliberalism (Oxford: Oxford University Press, 2005). 31. Pierre Bourdieu, Distinction: A Social Critique of the Judgement of Taste, trans. Richard Nice (London: Routledge, 1984), p. 204. 32. Elliott, Reinvention, pp. 4–5. 33. Sander L. Gilman, Making the Body Beautiful: A Cultural History of Aesthetic Surgery (Princeton: Princeton University Press, 1999), pp. 17–18. 34. Quoted in Lauren Slater, ‘Dr. Daedalus’, Harper’s Magazine (July 2001) (accessed 30 March 2015). 35. Ibid. 36. Quoted in Anthony Elliott and Charles Lemert, The New Individualism: The Emotional Costs of Globalization (London: Routledge, 2006), p. 2. 37. Margrit Shildrick, ‘Re-Imagining Embodiment: Prostheses, Supplements and Boundaries’, Somatechnics 3.2 (2013), p. 271. 38. Serlin, Replaceable You, pp. 3, 4. 39. Ibid., p. 4.

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40. One notable exception is Professor Kevin Warwick of Reading University’s Cybernetics Department, who has experimented with enhancing his own body. In 1998 he had a radio transmitter implanted in his upper arm, and in 2002 a 100-pin electrode was implanted in a nerve in his lower arm. See Pete Moore, Enhancing Me: The Hope and the Hype of Human Enhancement (Chichester: John Wiley & Sons, 2008), pp. 137–59. Also worth mentioning is New York University professor Wafaa Bilal, who had a camera implanted on a titanium base in the back of his skull. He eventually had to remove it as a result of infection. See Michael John Gorman, ‘What Is Human+?, Human+: The Future of Our Species Exhibition Catalogue (2011), pp. 3–7. 41. Paul Ulhas Macneill, ‘The Arts and Medicine: A Challenging Relationship’, Medical Humanities 37 (2011), p. 88. 42. Jane Goodall, ‘An Order of Pure Decision: Un-Natural Selection in the Work of Stelarc and Orlan’, Body and Society 5.2–3 (1999), p. 161. 43. Lucian Gomoli, ‘Posthuman Performance: A Feminist Intervention’, Total Art Journal 1.1 (2011). 44. Ibid., p. 14. 45. Quoted in Kathy Davis, ‘ “My Body is My Art”: Cosmetic Surgery as Feminist Utopia’, in Margrit Shildrick and Janet Price (eds), Feminist Theory and the Body: A Reader (Edinburgh: Edinburgh University Press, 1999), p. 458. 46. Gomoli, ‘Posthuman Performance’, p. 3. 47. ORLAN, ‘Manifesto of Carnal Art’ (accessed 14 December 2016). 48. Macneill, ‘The Arts and Medicine’, p. 88. 49. See Jill O’Bryan, Carnal Art: Orlan’s Refacing (Minneapolis: University of Minnesota Press, 2005), p. 19. 50. Rachel Armstrong, ‘Anger, Art and Medicine: Working with Orlan’, in Joanna Zylinska (ed.), The Cyborg Experiments: The Extensions of the Body in the Media Age (London: Continuum, 2002), p. 172. 51. Ibid. 52. Ibid., p. 173. 53. Ibid., p. 177. 54. Ibid., p. 176. 55. Rosemarie Garland-Thomson, Re-Shaping, Re-Thinking, Re-Defining: Feminist Disability Studies (Washington, DC: Centre for Women Policy Studies, 2001). 56. Stelarc, ‘Ear on Arm: Engineering Internet Organ’, 2014 (accessed 30 March 2015). 57. Geeta Dayal, ‘For Extreme Artist Stelarc, Body Mods Hint at Humans’ Possible Future’, WIRED (5 February 2012). 58. Stelarc, ‘Ear on Arm’. 59. Ibid. 60. Goodall, ‘An Order of Pure Decision’, p. 167. 61. Elizabeth Grosz, Volatile Bodies: Toward a Corporeal Feminism (Bloomington: Indiana University Press, 1994), p. 188. 62. Cary Wolfe, What is Posthumanism? (Minneapolis: University of Minnesota Press, 2010), p. xv. 63. For instance, see Gilman, Making the Body Beautiful, pp. 36–42.

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18 AFTERWORD: THE BODY AND THE SENSES Jo Winning

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hat IS a body? What are its boundaries and its contours? Can we ever really know the body in its entirety, or only ever in its parts? How do we come to know the body through the senses? And what does it mean to be a body and to encounter the body of the Other? Such questions resonate across the divide between the domains of philosophical and critical thought and clinical medicine, as likely to be asked by a doctor as by a humanities scholar. Yet the answers either might give would be spoken in radically different locations, utilise separate vocabularies and registers, and draw on distinct paradigms and histories, suggesting that there is no way to talk across these different domains. It is one of the key tasks of the critical medical humanities to establish a transdisciplinary dialogue across this divide, offering clinical medicine new terms and concepts to strengthen its ongoing dealings with the human body. An initial entry point into the drama and complexity of the questions posed above can be found in the confrontative sculpture by Welsh artist Andrew Cooper, titled Between a Rock and a Hard Place (Figures 18.1 and 18.2).

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Figures 18.1 and 18.2 Andrew Cooper, Between a Rock and a Hard Place, 2006. Fibreglass/acrylic/fabric/CAT scans/metal1 exhibited in ‘This is My Body’, Birkbeck and Irish Museum of Contemporary Art, July 2011. Author’s photographs, reproduced with permission of the artist.

On 5 August 1993, Death Row inmate, Joseph Paul Jernigan, was killed by lethal injection in the state of Texas, for the alleged murder of a 75-year-old man whose house he had broken into and entered.2 As a last act, Jernigan donated his body for scientific research at the urging of the prison chaplain. Jernigan’s cadaver was frozen in a mixture of gelatin and water, and then ‘cut’ into 2,500 axial sections, which were then recorded via computer tomography (CAT). This endeavour, run by the US National Library of Medicine (NLM), sought to produce a definitive data set of images of the male human body (they undertook the same process with a female cadaver at a later date), in order to ‘correct’ received anatomical knowledge and to provide, once and for all, an accurate record of human anatomy. The project, for which planning had begun in 1986, was compellingly titled the ‘Visible Human Project’ and, overall, produced 15 gigabytes of data.3 Cooper, a sculptor and multimedia artist whose work deals extensively with the body, mortality and representation, obtained a licence to utilise 250 of the 2,500 CAT scan images made of Jernigan’s body. These CAT scans are encased in acrylic sheets, which are held together by metal rods with small gaps between each sheet. The sheets are arranged in the natural sequence of the body, recreating the shadowy sense of a

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body caught in transparent casing. In this sculpture, the body cannot be apprehended as a whole but only in glimpses, traces, via oblique angles and sideways positioning of the viewer’s body. It is an object that is implied but never fully grasped by the human eye. Moreover, it has the strange effect of reminding the viewer of her own body. As she bends, kneels and peers in an attempt to see between the acrylic sheets, her curiosity is enmeshed with her own embodiment (Figures 18.3 and 18.4). Such spectatorial practice reminds us of the primal human urge to see inside the human body, and of, as Rachael Allen describes it in her chapter in this section, ‘our cultural curiosity with interiority’.4 The complexity of our encounter with the piece reminds us that the act of looking is not enough to comprehend the whole. As Cooper himself writes of Between a Rock and a Hard Place: The inference is that although both interior and exterior of the human can be seen simultaneously from a number of perspectives, there is something else necessary for a more complete understanding of humanity, something that lies beyond rationality or physical and temporal notions of existence.5 Inasmuch as the artwork reminds us that this more holistic knowledge of the human body lies beyond the remit of ‘rational’ epistemological frameworks, it also draws our attention to the propulsive strength of biomedical science, the ongoing drive towards

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Figures 18.3 and 18.4 Attempting to see the body in Between a Rock and a Hard Place, exhibited in ‘This is My Body’, Birkbeck and Irish Museum of Contemporary Art, July 2011. Author’s photographs, reproduced with permission of the artist. ever more fine-grained knowledge of the human body and the ways in which the body is always-already mediated by biomedical culture, its technologies, its paradigms and its practices. Moreover, the NLM’s chosen title – the ‘Visible Human Project’ – also demonstrates exactly which of the five human senses predominates in this thrust for knowledge, which is to say the sense of sight. Biomedical culture is pre-eminently a visual culture, structured by what Jennifer Richards and Richard Wistreich call its ‘sight-dominance’.6 As attempts to challenge, undermine, reframe and understand biomedical culture, as well as our dominant cultural ideologies around the human body in the West, the collected chapters of this section, ‘The Body and the Senses’, remind the reader of the invocation issued by Michel Serres: ‘If a revolt is to come, it will have to come from the five senses!’7 Each in its own way, these chapters offer profound challenges to our existing paradigms of the body and the senses, evidencing most importantly the rich potential of all our physiological capacities for perception. Both conceptually and historically, the work of these chapters reinstates the senses of touch, hearing, smell and taste. Even where they examine sight, they problematise a monolithic, unitary notion of what it means to look. Both Rachael Allen, from the important perspective of creative practice, and Suzannah Biernoff, from the critically engaged

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and self-reflexive stance of art history practice, remind us that there are different ways of looking. Moreover, even where the look is mediated by technology, Lindsey Andrews and Jonathan Metzl show that the technologies of medical imaging are far from neutral and are often placed in service of other cultural concerns, such as ideologies around race and racial difference. Together, these chapters foreground crucial questions: What do we know of the body? How do we conceptualise it? And then there are the implications for medicine itself: How do we heal the body? What are the tools at our disposal? These questions are central to the work of the critical medical humanities, as are the transdisciplinary approaches that are utilised by these chapters. As the historical chapters in this section suggest, our models and our tools have changed over time, and as the contemporary chapters show, even our current tools are limited by discursive and conceptual restrictions. Bethan Evans and Charlotte Cooper’s examination of the construction of fatness as pathology points to the contestations around what size and shape the female body in particular should be, whilst Luna Dolezal’s exploration of the elective surgeries and body modifications of the performance artists ORLAN and Stelarc puts under pressure our received ideas about exactly what kind of physical and/or organic boundaries the human body should have. If one of the compelling questions that emerges from these collected chapters is what is to be done about the predominance of the visual in medical culture and clinical practice, it would seem timely to ask how we transform biomedicine back into a sensately fluent discipline. Indeed, we might say this is one of the most pressing requirements of the critical medical humanities: to find a way to create a productive interface between critical theory and clinical practice in order to restore biomedicine to a more holistic sense of the human body. As Jane Macnaughton and Havi Carel’s chapter on breath and breathlessness shows, transdisciplinary explorations across the domains of culture and clinic begin to show ways in which new sensate and sensitive vocabularies might be brought into clinical practice and enhance biomedical knowledge. Reading across the historical periods and different cultural and clinical domains represented in this section, we might characterise the body addressed in these chapters as one rendered docile, in a Foucauldian sense, by discourse. In his discussion of the body of the soldier, as constructed by military ideology and practice, Foucault describes the processes by which docility, a state of capitulation and internalisation of ways of being and feeling, is instilled: ‘A body is docile that may be subjected, used, transformed and improved.’8 We might extrapolate from this concept and ask to what extent biomedicine insists upon the docility of the body in the clinical encounter. The roles of ‘doctor’ and ‘patient’ require apparently clear-cut bodily behaviours and locations, most often reinforced by the material space – ward, clinic, surgery, operating theatre – in which the encounter takes place. Moreover, biomedical discourse, as these chapters demonstrate in multiple ways, has already defined and situated the body as a site of signs and symptoms that can be read and treated. A docile body in this context might be said to be one that has lost full use of its sensory organs. From the patient’s perspective, however, we can see that states of pain and illness might be said

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to activate the senses. In her 1930 essay On Being Ill, now much quoted in medical humanities literature, Virginia Woolf describes illness as an embodied state remarkable for its heightening of our senses, one in which we become almost preternaturally sensate, acutely attuned to the fine nuances of even language itself: ‘In health meaning has encroached upon sound. Our intelligence domineers over our senses. But in illness . . . words give out their scent and distill their flavour.’9 Further, it is important to remember that the clinical encounter involves (at least) two bodies: that of the patient for sure, but also that of the clinician. Perhaps the more radical suggestion here, in the context of a critical medical humanities inquiry, is that a clinician’s body might similarly be made docile and have lost its ability to utilise all of its sensorium. As Heather Tilley and Jan Eric Olsén show in relation to notions and practices around visual impairment and sensory compensation in the nineteenth century, and Cynthia Klestinec compellingly demonstrates in relation to early modern medical practice, the sense of touch has played a crucial role in diagnosis and treatment in clinical practice in previous historical periods. In his 2011 TED talk titled ‘The Doctor’s Touch’, Abraham Verghese, Professor of Medicine at Stanford University, laments the onward march of biomedical technology and the loss of physical examination as the first port of call in the clinical encounter; he notes that ‘the most important innovation in medicine to come in the next ten years . . . is the power of the human hand, to touch, to comfort, to diagnose and to bring about treatment’.10 It is partly the work of the critical medical humanities to identify why this loss of haptic perception has come about. One way to understand it is to consider the roots of biomedicine transculturally, in contrast to the development of other clinical traditions outside the West. In his book, The Expressiveness of the Body and the Divergence of Greek and Chinese Medicine, the Japanese scholar Shigehisa Kuriyama explores the pivotal role of dissection in the trajectory of Western medicine as it develops from its Greek origins, and the way in which the practice of dissection as a mode of acquiring anatomical knowledge creates ‘a crystallization of a particular way of peering into the body, the birth of a certain visual style’.11 This stands in direct contrast to the trajectory of Chinese medicine with its focus on touch as the primary sense in diagnosis. At the time Western medicine is developing its knowledge base out of the dissection of cadavers, ‘Chinese writings [testify] that the eyes were wrong.’12 What Kuriyama terms the particular ‘visual style’ of Western medicine comes to foreground the visual sense as a mode of ‘reading’ the signs of and in the body but it also comes at the cost of dulling the haptic sense in the clinician. To exemplify the pre-eminence of touch in the Chinese tradition, Kuriyama considers the clinical practice of taking the pulse. What do we feel when we place our fingers on the wrist, and palpate the movements there? We say: the pulsing artery. What else could there be? Chinese doctors performing the same gesture, however, grasped a more complex reality. . . . There were thus six pulses under the index, middle, and ring fingers, and twelve pulses on the two wrists combined.13

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The difference here is not just about the sensitivity or sophistication of the touch, or the amount or terms of the clinical detail obtained. The profound difference is about fundamentally differing models of the human body. The structural model acquired through centuries of anatomical dissection – and as the ‘Visible Human Project’ demonstrates, this knowledge base is ever needing to be refined – presents the body as an interior that must be made visible, must be seen. A model of the body such as that understood in Chinese medicine (here, of course, I acknowledge that Chinese medicine has many different strands) conceptualises the interior as not so distant or impenetrable that it cannot be read, and diagnosed, through touch.14 In their examination of the anatomisation of the voice in the Renaissance period, Jennifer Richards and Richard Wistreich identify a rich counter-discourse to the dominant tracts of dissection and anatomical knowledge in the work of the English physician Helkiah Crooke. Crooke’s ‘philosophical speculation on voice and hearing’ reveals to Richards and Wistreich a kind of dialectical thinking that moves beyond the binary opposition of ‘mind’ and ‘body’, and which demonstrates what they call ‘embodied thinking’, which is to say a way of approaching the human body, and understanding it, which folds in both rational thought and sensory information at the same time. It is, I would argue, a useful term for considering what we require of clinicians in the contemporary context of biomedicine. In his book Listening, Jean-Luc Nancy asks, ‘Is listening something of which philosophy is capable?’ The question is a challenge to the discipline, a throwing down of the gauntlet to a mode of thought that has become bound in its own omnipotence. Nancy asks further, ‘hasn’t philosophy superimposed upon listening, beforehand and of necessity, or else substituted for listening, something else that might be more on the order of understanding?’15 The philosopher, according to Nancy, is someone who hears, rather than listens: indeed, is the subject who cannot listen. Why this splitting in this account of the aural sense of the philosopher? The problem, for Nancy, turns on the difference between the two French verbs écouter and entendre. In the first instance, écouter translates as listening, a deployment of the aural sense that suspends pre-judgement or understanding, which encounters sound rather than predeterminedly imposing meaning upon it. By contrast, as Nancy notes, ‘entendre “to hear” also means comprendre “to understand” ’ and as such denotes a process in which the listener has already presupposed the meaning of the sound she encounters. Following Nancy’s evocation of the problems of a philosophy that forecloses its investigations through a state of omnipotence, I want to pose the following question: ‘Is medicine capable of listening’? Nancy notes that ‘to be listening is always to be on the edge of meaning, or in an edgy meaning of extremity, as if the sound were precisely nothing else than this edge, this fringe, this margin.’16 The act of listening here might seem to suggest a radical state of unknowing that would appear to be untenable in clinical practice. Yet I am not arguing that biomedicine must quit its will to knowledge of the body by eschewing the primary sense of sight; rather, trying to suggest a way to crack open the ‘alliance’ identified by Foucault between ‘words and things’ – the fusing of biomedical discourse with bodily experience – which allows the clinician ‘to see

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and to say’.17 As Foucault reminds us, the clinician’s gaze is a very wordy one: in his terms, ‘loquacious’.18 So loquacious, in fact, that it often silences the patient’s voice and imposes its interpretation and knowledge on to the body and clinical evidence.19 Here, critical medical humanities might find ways to help medicine move from entendre to ecouter, to couple verbs beyond the Foucauldian dyad, which is to say, to see and to listen. As Macnaughton and Carel radically argue in this first exploration of their cross-cultural/clinical project on breath and breathlessness, ‘biomedicine cannot wholly explain how illness may be expressed physiologically.’20 To begin from a place of uncertainty and recognition that biomedical discourse is not the only knowledge base is concomitantly to propose a new kind of listening, an opening up to sound and language in the clinical encounter and deployment of the aural sense. This is a kind of listening demonstrated in the clinical practice of the psychiatrist Alexis Brook. Brook’s clinical practice drew on both his psychiatric and his psychoanalytic training. His published and unpublished papers on disorders of the gut and eye demonstrate a uniquely careful attunement to the complex relationship between psyche and soma, as well as the insightful recording of the bodily metaphors and symbols that permeate his patients’ narratives. In 1995, Brook published a clinical paper on the psychological aspects of disorders of the eye, based on work he had undertaken as a psychoanalytic psychotherapist in the Eye Department of Queen Alexandra Hospital in Portsmouth and the Well Street GP Practice in Hackney, East London. Brook set out to study ‘psychological aspects of disorders of the eye’, using a methodology that, whilst relatively simple, pushed into territory beyond the remit of the ordinary clinical encounter. He undertook ‘semi-structured interviews of an hour each’ with the patients, not ‘to establish a psychiatric diagnosis’, but rather to ‘try and understand whether any intra- or interpersonal conflicts’ may have contributed to the eye disorders experienced by these patients. The eye, for Brook, is a crucial organ for the human subject, one that is central in the subject’s relationship with external reality. As he argues, ‘the eye is not just an organ of vision but is one of the most significant organs through which an individual makes contact with the world.’21 Brook identifies the intimate relationship between the eye and the mind in both his clinical cases and in his analysis of the symbols and metaphors of what he calls our ‘everyday language’: Everyday language indicates that it is inherently recognised that the eye and the mind are very much equated. I see means ‘I understand.’ We visualise a problem. To have one’s eyes open is to be emotionally and intellectually aware of what is going on. But if there is something we do not want to acknowledge, because it may be unacceptable, we turn a blind eye. The eye can reflect aspects of one’s personality. We can look with love but we can look with hate. We can go in to a blinding rage and looks can kill. To make eye contact means making a relationship, and seeing eye to eye means experiencing mutual understanding. Giving insight means giving internal sight with the eyes to the mind.22 The clinical cases in Brook’s paper convey the way in which his attunement to the metaphors and symbols used in his patients’ language allows him to access the psychic

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content that is embedded within the somatic. In one clinical example, Brook recounts the following history: A very worried-looking 50-year old single man, with a six months history of progressive visual loss, leading to an inability to read, had had many investigations, including a brain scan, all of which were normal. It emerged that his mother, on whom he had been deeply dependent, had died six months previously at the age of 85. ‘I am trying,’ he said, ‘to blot it out.’ His eye symptoms cleared after one interview.23 Here, the patient’s use of metaphor links tellingly to his somatic symptom of progressive visual loss. One interview is enough. Telling – putting the trauma and loss into words, into language – someone – having that language listened to – allows the body to heal. As the mouth speaks – ‘I am trying to blot it out’, so the body speaks through the symptom of progressive visual loss. In one sense, this is no news at all to psychoanalysis. We might say that what Brook offers here is a kind of miniaturised version of the ‘talking cure’.24 What is important here, though, is the way in which it is brought into the realm of clinical practice and biomedical research, with a recognition that the affective and the somatic combine and meet in the place of linguistic signification. It is Brook’s ability to listen as a psychoanalytic psychotherapist, as well as a psychiatrist, that allows him to hear the way in which psyche and soma are correlated. In his concluding remarks, Brook notes that ‘it was the patients who valued the experience of being understood who were more likely to respond to even a few interviews.’25 In particular, one of his patients tells him: ‘I think it’s because I’m beginning to look at my problems; you have opened my eyes.’26 There is a complex enmeshment of sensory metaphor here in this seemingly simple everyday statement. Brook’s listening, his use of his aural sense, allows the patient to see – have insight – into his problems. Unsurprisingly, such insight means both he and Brook can gain purchase on his refractory eye disorder. Yet here too, we might say, there is something of a more sensately fluent clinical practice at work. Brook has eschewed the use of his visual sense as a clinician, his eye, in favour of the deployment of his aural sense. In his listening, Brook utilises his I, it is an act of selfhood or ‘embodied thinking’ that allows for a space of intersubjectivity to emerge between himself and his patient. There is a small but deeply significant revolution that takes place here, in which more senses, if not all five, are placed in the service of treating the human body. The future of a more sensate biomedicine will lie in such small revolutions between bodies and minds, in the clinic, the teaching room and the laboratory. It is our task, in the critical medical humanities, to help to provide the conceptual tools for this future.

Notes 1. Between a Rock and a Hard Place, exhibited in ‘This is My Body’, Birkbeck and Irish Museum of Contemporary Art, July 2011. Author’s photographs, reproduced with permission of the artist.

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2. For an exploration of medicine and state execution, see Lisa Guenther, ‘On Pain of Death: The “Grotesque Sovereignty” of the US Death Penalty’, in this volume, pp. 395–410. 3. For more detail on the ‘Visible Human Project’, see http://www.nlm.nih.gov/research/visible/ visible_human.html (accessed 31 May 2015). 4. Rachael Allen, ‘The Body Beyond the Anatomy Lab: (Re)addressing Arts Methodologies for the Critical Medical Humanities’, in this volume, p. 191. 5. Andrew Cooper, Artist’s Statement (accessed 11 August 2015). 6. Jennifer Richards and Richard Wistreich, ‘The Anatomy of the Renaissance Voice’, in this volume, p. 279 7. Michel Serres, Angels: A Modern Myth (Paris and New York: Flammarion, 1995), p. 71. 8. Michel Foucault, Discipline and Punish: The Birth of the Prison (New York: Vintage, 1995), p. 136. 9. Virginia Woolf, On Being Ill (Ashfield, MA: Paris Press, 2002), p. 21. 10. Abraham Verghese, ‘A Doctor’s Touch’, TED talk, July 2011. Verghese’s talk is a moving invocation to recapture the clinical art of touch; see the talk in its entirety at (accessed 4 September 2015). 11. Shigehisa Kuriyama, The Expressiveness of the Body and the Divergence of Greek and Chinese Medicine (New York: Zone Books, 2002), p. 120. 12. Ibid., p. 22. 13. Ibid., p. 25. 14. For a more extensive discussion of Chinese medicine and its complex intersections with biomedicine, see Volker Scheid’s chapter in this volume. 15. Jean-Luc Nancy, Listening (New York: Fordham Press, 2007), p. 1. 16. Ibid., p. 7. 17. Michel Foucault, The Birth of the Clinic (London: Routledge, 2007), p. xiii. 18. Ibid., p. xii. 19. Of note here, Richards and Wistreich’s chapter in this volume points to the complex constitution of the voice, a human faculty not simply restricted to the anatomical apparatus that produces sound, but also made up of breath and tone, which open up different modalities of meaning. 20. Jane Macnaughton and Havi Carel, ‘Breathing and Breathlessness in Clinic and Culture: Using Critical Medical Humanities to Bridge an Epistemic Gap’, in this volume, p. 294. 21. Alexis Brook, ‘The Eye and I: Psychological Aspects of Disorders of the Eye’, Journal of the Balint Society 23 (1995), p. 13. 22. Ibid., p. 13. 23. Ibid., p. 15. 24. Brook utilises this model of listening in other medical disciplines. In his work in the Department of Gastroenterology at St Mark’s Hospital, he continues to listen closely to the language of his patients. In his 1991 paper, ‘Bowel Distress and Emotional Conflict’ (Journal of the Royal Society of Medicine 84.1, pp. 39–42), Brook examines case histories of patients presenting with gastrointestinal disorders, again listening for the affective content in patients’ accounts of their illness. In an undated and unpublished paper titled ‘Gut Language of Somatizing Patients’, Brook collects quotations from gastroenterology patients: ‘My whole gut is in rebellion,’ says one woman; ‘my abdomen is screaming and

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complaining,’ says another. A third says ‘Fighting is going on in my abdomen, like there are a whole lot of people fighting. My whole system is rebelling, my gut is boiling up.’ ‘Gut language’ suggests that the gut – that corporeal entity – has its own language and in these three clinical examples, gut language is characterised by conflict, violence and militaristic symbols. Thus Brook, the sensitised clinician, listens to the metaphors of his patients. 25. Brook, ‘The Eye and I’, p. 15. 26. Ibid., p. 15.

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Part III Mind, Imagination, Affect

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19 MEDICAL HUMANITIES AND THE PLACE OF WONDER Martyn Evans

Introduction t will be the argument of this chapter that, among the critiques that could be thought to contribute to a critical medical humanities, at least one may turn out to bear upon an important – but generally tacit – presumption in mainstream medical humanities. The presumption in question is that, taking our materiality and embodiment for granted, medical humanities’ principal task is to return the patient’s voice to prominence within the clinical encounter. The particular critique I have in mind involves disputing this very taken-for-granted-ness of our embodiment, and cautioning against replacing medicine’s neglect of the personal with medical humanities’ neglect of the material. Medical humanities is still under development in terms of its scope, methods, presumptive goals and scholarly security. Returning the patient’s voice – due attention to her or his experiences, hopes, fears, interests and will – to a central place in the clinical encounter remains a key concern of much legitimate work within mainstream medical humanities. But in undertaking it, we should avoid or curb simplistic forms of opposition to medical materialism, bio-reductionism or mechanistic views of health and illness. The point is not that those views ought not to be opposed, just that they should not be opposed simplistically. An emphasis on the patient’s story, the biographical narrative, ought also to take seriously her being a material object – her thing-hood – lest the narrative emphasis inadvertently compound that ‘disenchantment’1 of the material body that, we often suppose, is wrought by the scientific gaze. Our bodies-as-objects sustain an experience proper to material things that know themselves from the inside, have agency, and have a finite duration. These characteristics defy ordinary understanding, are essential to our nature, and are at risk of wholesale neglect by simplistic opposition to biomedical reductionism. Although this critique can be stated in dry analytic terms – as I have here – the source of its motivation, its ‘energetics’ (to use Bennett’s term2) need not be. In my own case, this ‘energetics’ arises in a sense of wonder at embodied human nature. And since turning critique upon mainstream medical humanities should be among the additional virtues of a critical medical humanities, then my claim will be that critical medical humanities may be done valuable service by a well-attuned and wide-awake sense of wonder.

I

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Critique, ‘the Critical’ and Critical Medical Humanities Firstly, let us review the ideas of critique and ‘the critical’ in relation to the critical medical humanities. There are perhaps four pertinent senses of ‘critical’ in this context. Firstly, something may be critical in the sense of dispassionately and rationally analytical, as when one undertakes a critical appraisal of a work or an idea. Typical of this within a humanities discipline is David Raphael’s oft-cited characterisation of analytical philosophy as being ‘the critical evaluation of assumptions and arguments’.3 Secondly, and perhaps most commonly encountered in daily life, someone is typically described as being critical of something if he or she is negatively disposed towards it, aversive or hostile (we often speak of ‘being critical of’ a suggestion or a proposal). Thirdly, something may be vitally necessary – for instance, correct tyre pressures are critical to the safe and predictable behaviour of a car on the road. And fourthly, a pivotal or future-shaping moment or phase may be thought to be ‘the critical point’, as when the capture of a key stronghold is seen to be the turning point in a battle. Now how does critical medical humanities fare under these different senses of ‘critical’? It should, I think, always be dispassionately and rationally analytical, at any rate when undertaken in an academic spirit. It may well often be contingently negative, as when it is undertaken to bring about change – medical humanities is, after all, the continuation of medical ethics’ response to the perceived shortcomings of excessively managerial and technical conceptions of healthcare. Naturally, this Companion entertains the ambition that critical medical humanities be vitally necessary to the continued and extended relevance of medical humanities in understanding and developing organised healthcare. Whether its present turn – of which this volume is an expression – will be seen to be pivotal is, of course, something that can be judged only retrospectively by future scholars. We shall simply have to wait and hope. Be that as it may, critical medical humanities is inevitably a critique – a further idea that may itself fulfil the four senses, above, of ‘critical’. Any considered critique is (or ought to be) dispassionately and rationally analytical, and individual cases will frequently, though not inevitably, reflect an at least negative or sceptical view of their object. As a general phenomenon (I do not here speak of individual critiques), the very idea of critique is essential to the testing of thought and hence to its development or elaboration; it is in this sense critical to almost any kind of progress. From time to time, given this general role, individual critiques will be seen to be pivotal. (Some examples even go by the very name – Immanuel Kant’s Critique of Pure Reason is the first and most blazing to come to mind, in its altering forever the possibilities available to Western thought when considering the relationship between mind and world.4)

Progressive Critique within Mainstream Medical Humanities I should say at the outset that while critical medical humanities is self-evidently named as a sub-set of a wider mainstream medical humanities, I do not myself see it as necessarily a late or current epoch but rather as an emergent tendency that is always

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immanent within (at the very least) philosophical forms of medical humanities inquiry, perhaps becoming more recently apparent as it accumulates, but there all along. Patterns of its emergence can be found, I think, that vary with the interests of the inquirer. But most observers would recognise the view, put forward by Anne Whitehead and Angela Woods,5 that the broad field of medical humanities has roots in ethics, education and experience, and most would agree with them – I certainly would – that it is the last of these that has typically received central attention from medical humanities researchers, focusing on the experience of illness, diagnosis and treatment. Whitehead and Woods identify a ‘primal scene’ for ‘mainstream’ medical humanities, subsisting within the clinical encounter and typically involving the moment when a doctor gives the diagnosis of cancer to a patient – a moment that gives rise to trenchant and characteristic questions concerning experience, engagement and response, and human frailty. As they rightly observe, these are the questions that have received most attention in conventional medical humanities.6 For Whitehead and Woods, the critical medical humanities offer a two-fold advance on the mainstream, in method and in agenda. The gain in method consists in the attempt to pose more critical questions to this ‘primal’ scene, taking greater account of societal and political context and factors, and of how the ideas pertinent to health, illness and disability are used in public spheres; Woods and Whitehead thereby question the adequacy of medical humanities scholarship hitherto.7 The enlarged agenda consists of a reflexive turn whereby medical concepts are taken up and interrogated within the theorisations and operations of humanities and social sciences themselves.8 Pace Whitehead and Woods, I would myself regard many aspects of these important advances as having been long implicit in what I would call a progressive critique that is visible in the mainstream of medical humanities and is indeed in some respects traceable back to forebears in medical ethics and in philosophy and sociology of medicine, as I shall summarise below. Similarly, when they survey the range of pertinent senses of ‘critical,’ there is much to agree with – but not, however, because it is newly arrived at, but rather because it is perhaps a little more mainstream than they suggest. For instance, although some mainstream medical humanities writers may have been guilty of upholding a supporting role for humanities in the service of medicine, a progressive critique has explicitly contrasted this with an alternative, and preferable, integrated role for the humanities in response to the perceived neglect of the patient’s experience in technical and managerial forms of healthcare delivery.9 Again, humanities have been seen as critical in the sense of being vital to medicine since long before medical humanities emerged as a discrete field of study, among writers as diverse as William Osler,10 René Dubos11 and, more recently, Eric Cassell.12 Moreover, while I strongly uphold the insistence that critical medical humanities ‘sets research agendas reciprocally in the humanities’,13 it is not new: I myself have been proposing it over many years,14, 15, 16 partly inspired by Stephen Toulmin’s earlier example.17 Signally, such an insistence is fundamental to the conception of the project ‘Medicine and Human Flourishing’, for which the Durham Centre for Medical Humanities was awarded a Wellcome Trust Strategic Award in Medical Humanities in 2008.

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The ‘progressive critique’ that I have in mind has its own history. For some decades, commentators in both medical ethics and, subsequently, medical humanities have recognised and protested the fragility of the patient’s voice, story and experience in clinical encounters that were conceived within the biomechanical form of the medical model. Thus a standard medical humanities critique sought to affirm or reaffirm the patient’s voice within the clinical encounter. For example, the standard critique is implicit or explicit in work by Susan Stephenson and Gillian Walker,18 Jack Coulehan,19 Eric Cassell,20 Trisha Greenhalgh,21 Trisha Greenhalgh and Brian Hurwitz,22 Raimo Puustinen,23 Jeremy Holmes,24 Rita Charon,25 Alex Mauron and Micheline Louis-Courvoisier,26 Sven Frederiksen27 and Cecil Helman.28 What I think these instances of the standard critique have in common is that they presume or openly acknowledge the materiality of the patient’s body as being self-evidently crucial, while somehow not being ‘the problem’. The challenge and the mystery lie elsewhere, in successfully integrating the person into the clinician’s conception of the patient, and thus the patient’s voice into the clinical encounter. Cassell at times exemplifies this: The job of the twenty-first century is the discovery of the person – finding the sources of illness and suffering within the person, and with that knowledge developing methods for their relief, while at the same time revealing the power within the person as the nineteenth and twentieth centuries have revealed the power of the body.29 Physicians’ manifest knowledge of disease has been the focus of medicine for these last 150 years while knowledge of sick persons and doctors has languished – left to intuition and unfocussed experience.30 . . . as does Charon: Sick people need physicians who can understand their diseases, treat their medical problems, and accompany them through their illnesses. Despite medicine’s recent dazzling technological progress in diagnosing and treating illnesses, physicians sometimes lack the capacities to recognize the plights of their patients, to extend empathy toward those who suffer, and to join honestly and courageously with patients in their illnesses.31 She, like Greenhalgh and Hurwitz, is an exponent of alternative ‘narrative-based’ conceptions of medical practice, largely in response to bureaucratic and commodified forms of medical care. Others, however, extended the conventional critique to acknowledge that clinical medicine needed a more sophisticated understanding of the body itself, and not simply, as it were, a reattachment to it of the person. Fritjof Capra, for instance, takes the biomedical model as his target for a critique within the medical arena that none the less exemplifies what can go wrong with the inappropriate application of mechanistic thought:

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By concentrating on smaller and smaller fragments of the body, modern medicine often loses sight of the patient as a human being, and by reducing health to mechanical functioning, it is no longer able to deal with the phenomenon of healing. This is perhaps the most serious shortcoming of the biomedical approach. Although every practicing physician knows that healing is an essential aspect of all medicine, the phenomenon is considered outside the scientific framework; the term ‘healer’ is viewed with suspicion, and the concepts of health and healing are generally not discussed in medical schools.32 Similar challenges to the way we see and understand our own materiality underlie the work of David Morris,33 Byron Good34 and Stephen Toulmin,35 for example. When these challenges are taken up within work that is more obviously badged as medical humanities, I think that the result is plausibly to be found as prototypical or already constitutive of ‘critical’ medical humanities in the area that interests me for our purposes in this chapter – a recognition that ‘the problem’ lies not solely in understanding (and responding to) the experience of the patient but also in understanding how that experience is fused with the materiality of the body, and hence in better understanding the meaning of what it is to be human in the intense context of the clinical encounter. Greaves asserts the scale of the challenge: the most notable feature of Western medicine . . . is not mechanistic medical monism, but lopsided medical dualism, with the technical and the sciences dominant, and the personal and the arts recessive, but without any complete supremacy.36 He subsequently argues that the biomedical model cannot adequately be redressed; it must instead be replaced with a radical ‘new medical cosmology’.37 This takes seriously Toulmin’s challenge, as do, in their different ways, medical humanities writers as diverse as Marjorie Sirridge and Kathleen Welch,38 Steve Wainwright and Bryan Turner,39 and Carl-Edvard Rudebeck,40 to give but a few examples. I think each of these constitutes emergent ‘critical medical humanities’ in one or more of the senses that I have noted above. The importance of this is, for me, increasingly tied to a kind of inversion of where I think medical humanities (and medical ethics before it) set out. Instead of taking our materiality for granted in search of the interpersonal and experiential within the clinical encounter, I am more inclined to take for granted at least the fact of the interpersonal in the search for a fuller confrontation with our own materiality. If, given their success in restoring the patient’s voice, the conventional medical humanities critiques have neglected her materiality, then I take it as one among the many tasks of a more critical medical humanities to protest this neglect and to try to reverse it. To do anything like justice to the task requires, I suggest, a confrontation with our embodiment that does justice to its mystery. That confrontation, my personal adventure in critical medical humanities, is constituted in the sense and experience of wonder at embodied human nature.

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What is this Thing called Wonder? – A Prefatory Note If exploring wonder has a role in the ‘business’ of doing medical humanities, then in this chapter I will try to discern at least one aspect of that role. To attempt it, then I first need to say what I mean by wonder. Here is a provisional definition that I have previously put forward in the context of the clinical encounter: Wonder characterises a special kind of transfiguring encounter between us and something other than us: it is an attitude of special attentiveness that arises within us, prompted by circumstances that may be entirely ordinary yet, through our active and responsive imagination, can yield an object in which the ordinary is transfigured by and suffused with something extraordinary as well. The attitude of wonder is thus one of altered, compellingly-intensified attention to something that we immediately acknowledge as somehow important – something that might be unexpected, that in its fullest sense we certainly do not yet understand, and towards which we will likely want to turn our faculty of understanding; something whose initial appearance to us engages our imagination before our understanding; something at that moment larger and more significant than ourselves; something in the face of which we momentarily set aside our own concerns (and even our selfconscious awareness, in the most powerful instances).41 This is admittedly a rather ponderous attempt – and there is a much shorter way of putting the matter that, I think, implies the foregoing and catches something of the poetry of experiences of wonder: in wonder the world is made newly present to us. Now wonder is not unique in this general regard, of course. I see wonder as one of the varieties of intensified experience among others – mystical, religious, ecstatic, aesthetic, sublime; or an experience of overpowering love, or of unusual moral clarity. Within all of these kinds of cases there is no doubt something that we can encourage, and perhaps cultivate. What may be true of all of them, but is usually true of experiences of wonder, is that we cannot summon them up on demand, like rubbing a lamp to produce a genie. Another characteristic of wonder is shared by some, but definitely not all, of the other varieties of intensified experience: experiences of wonder are typically valuable and it would be appropriate to encourage them and seek them out, but wonder is also certainly capable of a double edge. Just like the aesthetic imagination, it may sharpen what we already are, for good or ill. It is one thing to see, intensely, the future of the world in a new-born child, but perhaps not only in fiction (Hans Castorp is the modern prototype here in Thomas Mann’s The Magic Mountain) does a damaged imagination find wonder in necrosis and death.42 So the sense of a world made newly present is not the sole property of the morally upright, or the aesthetically mature, any more than is the experience of religious or mystical ecstasy. With intense experience comes, perhaps, intense responsibility. Along with these, wonder is liable to lead to an alteration in our apprehending the world, an alteration that clearly bears on how we derive our conception of ‘the good’. It may intensify what we are inclined to see as good and it may give us a fresh conception of

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why good things are good. For instance, there is a deal of difference between those who see in the natural world a panoply of reasons to be humble about who we are and what we can do, and those who see in that same natural world a dazzling array of opportunities for commercial gain. The philosophical exploration of wonder is an enduring challenge, even if one confines oneself to those aspects most obviously provoked by the concerns of medical humanities, since one of wonder’s chief provocations is also the core business of healthcare and any ensuing medical humanities worth the name, that is embodied human experience in sickness and in health. I have scratched the surface with inquiries into wonder in relation to the clinician, to the patient, and to human finitude and mortality;43, 44 such inquiries presume the connection of different people’s imaginations through wonder, and our engagement with the lives of others through shared wondering experiences. These and other inquiries engage the question of wonder’s phenomenological content; its characteristic dynamics (for instance, in relation to normally perceived time); the question of whether it can be cultivated; whether there is such a thing as a ‘talent’ for wonder; whether wonder is in any sense gendered; whether it can be silenced, defeated or annulled; and whether it can coexist meaningfully with explanation, and so on. All of these distinguishable inquiries, I believe, are capable of contributing to medical humanities inquiry, as well as furthering the understanding of wonder in its own right.

Turning the Tables: A Reverse ‘Critical-Medical-Humanities’ Critique If our bodies’ materiality is important, and particularly if it is important in ways beyond those that are the obvious focus of that mechanistic form of medicine against which medical humanities conventionally protests, then obscuring that importance may at best be misleading, and at worst risk a harmful distortion in the way we conceive the goals of clinical care. We should avoid such a risk, initially by pointing out the error of ignoring our bodies’ materiality, in a reflexive critique proper to the critical medical humanities. If pointing out and, ideally, demonstrating the importance of our bodies’ materiality helps us avoid obscuring it, then that would be both a morally and an epistemically good thing, on the story so far. So balancing a conventional and traditional medical humanities critique with this reverse critique would be an important constraint upon – or, perhaps, a more sophisticated version of – the conventional medical humanities view. Accordingly, in this chapter I put forward this reverse critique as a candidate instance of critical medical humanities in action, in this instance turned reflexively upon one of conventional medical humanities’ chief concerns. Now to take this reverse critique forward one must establish its own grounding assumption, that our materiality, our ‘thing-ness’, is important in other ways than as the contested or reductive objects of the biomedical gaze. Accordingly I will try to take for granted neither experience nor materiality, neither passion nor clay – and nor

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will I take for granted their wondrous fusion together in us now as we live, nor their apparent (and equally wondrous) dissolution when we die. (Nor, at the risk of a whiff of pan-psychism, would I willingly rule out even their apparent latency in the physical world around us, although my argument does not depend on this.) For I fear that, even while objecting to an ostensibly depersonalised view of the patient, one may risk taking too impoverished a view of objects or material things in general – which, of course, include our own material selves.

A Whiff of Dualism? There is an unavoidable caveat at this point, in that we must acknowledge the risk of expressing the reverse critique in somewhat dualist terms. The conventional medical humanities critique generally assumes that the biomedical view, allegedly so negligent of the personhood of the patient, arises from a crude mechanistic dualism blamed (rather unfairly, I think) on René Descartes, whose attractions for medical arrivisme are impishly summarised by Roy Porter: ‘A huge KEEP OUT notice had, as it were, been pinned to the body, excluding theologians, moralists, and anyone else considering fishing in medicine’s pond.’45 It is this broad attribution of dualism – together with a tacit but more or less dogmatic supposition that no form of dualism is tenable – that I think supplies the metaphysical underpinnings of the conventional critique, whose primary focus is, of course, ethical. I have clear sympathies with the ethical intent, but anxieties about too-simple an adoption of the anti-dualist foundations. Essentially, if the critique is objecting to a medical dualism, it must itself be free from any dualist taint, such as promoting the experiential self at the expense of the bodily self, for instance. It is no good talking about narrative and the making of meaning without paying close attention to the bodily grounds of narrative and meaning, as Mark Johnson has expounded at length.46 Some defensible alternative to dualism must be implicit in the conventional critique, and I think it generally behoves the critic to make clear what that alternative is. I myself struggle to know how to talk about embodied human experience in wholly non-dualistic terms. When, in this volume, Christoph Rehmann-Sutter and Dana Mahr characterise sufferers of inherited disease as facing the problems of ‘living a body’, they disclose the difficulty of suppressing a duality joining the life and the body by which the life is lived.47 I turn for help here to something like aspect-dualism. There may indeed be no mental substances of the kind presumed in ‘substance dualism’, but I do not know how to talk about ideas, about mental causation, or about the antecedents of mind other than as logically distinguishable aspects of processes that cannot be described in solely physical terms. Some writers, health geographers prominently among them, appear to concede this but try to downplay the significance of the concession – perhaps in the hope of avoiding opprobrium – through emphasising the importance of the affective over against the rational, and its grounding in embodiment.48, 49 In particular, ‘non-representational theories’ aim at enfolding external objects of experience into shared habits and practices

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in which meaning, signification and symbols are conceptually subordinated to affective bodily reactions. As has been argued elsewhere,50 this reduces rational and intentional engagement with the world to mere epiphenomena, grievously undermining an otherwise laudable attention to the grounding of our experience in embodiment. But there is more to experience than affect: without due regard for cognition and intentionality (in all senses, the Husserlian included), we lose all purchase on the content of experience.51 Still more radically, ardent exponents of anti-dualist theories of mind – Susan Blackmore is an example – leave me wondering what their own self-experience can really be like, if they genuinely feel that the self is dispensable or illusory, a phantom created by philosophising.52 By contrast, after we have acknowledged (as we certainly should) the substantial proportion of perception, thought, action and response that arises from our combined body–brain’s automatic, embodied, instinctual, sub-conscious operations, there is for me (and, I take it, for the reader) an irreducible inner, felt, qualitative remainder of mental life – what we call mind, or experience, or will, bursting alive in our longings, our purposes, our contemplations, our realisations and so forth – that simply cannot be made intelligible in exclusively material descriptions. (Nowhere is this more preternaturally clear to me than in considering the content, and the self-abnegating mode, of experiences of wonder; but it is clear enough in virtually all other experiences as well.) The crude mechanistic dualism alleged of much postEnlightenment science may well be guilty of all the sins attributed to it, but I have never understood why anyone thinks that the solution to one entrenched folly lies in adopting a fresh one. Nor can a conventional medical humanities critique simply try to ‘dissolve the question’ as meaningless (once a favourite Oxford-School response to troublesome questions in philosophy). One cannot easily put forward a substantive view on an insubstantial question; if the problem of the relation between brain and mind is ultimately meaningless, then the anti-dualist critique is just slicing through air, and energy would be better deployed elsewhere. Rather it seems to me that we should take neither experience nor embodiment for granted. Recognising that the conventional critique has in ethical terms a perfectly legitimate target, we might better say that an unthinkingly mechanistic biomedical approach errs by neglecting the patient’s experience through taking it for granted (or leaving it for others to deal with elsewhere – theologians, perhaps, in Porter’s waspish caricature). The conventional medical humanities riposte to that error must avoid the danger of mirroring it, in somehow taking our materiality for granted.

Keeping Materiality in Mind There are, then, two conditions here that the standard medical humanities critique must meet. Firstly, to complain in general terms about dualistic understandings of the patient without providing a satisfactory alternative monistic account will not do. That is a task that I do not think has been satisfactorily undertaken (and in the mean time I myself am sticking to some kind of modified aspect dualism). Secondly, whether one

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takes a monist or a dualist view of the patient, the one-dimensionality of biomedical materialism will be improved upon only by an alternative view that takes for granted neither experience nor embodiment – that manages to do justice to both the saturation of experience and the vibrancy of flesh as matter.53 This problem is, of course, not the sole responsibility of medical humanities to address; indeed, the question of how we are to think of matter as such drives (how I would have liked to say ‘animates’! But that is to beg the question) the crossdisciplinary field of ‘thing studies’. Yet, typically, ‘thing studies’ addresses questions of our identification of and relationships with objects, artefacts, things and their traces, and the signification they have for us (for instance, as tokens of loss, remembrance or betrayal), rather than questions of our actually constituting things ourselves. Nearer to the point I have in mind, howsoever difficult it may be found, is the work of the French performance artist ORLAN, who purports to take the body seriously in many aspects of its materiality, such as its plasticity and above all its contingency – available for inscription and reinscription as though it were canvas or plaster, or for use as a measuring instrument or even the prototype of a slot-machine. The enmeshing of our experience among many other kinds of material experiences is the concern of David Herman’s work on human–animal relations.54 Jane Bennett, whose work I mentioned earlier, sees the blending of humans, animals and inanimate things as part of the more general dancing vibrancy of matter, in a world whose former enchantment she urges us to rediscover. Shorn of Bennett’s ethical programme, and shorn of its (apparent) dependence on the more bizarre and transgressive enmeshings of bodies and technology, this resurgent emphasis on the vibrancy of matter, including our bodies’ own matter, is part of what I think medical humanities requires in its overthrow of traditional dualism. (The vibrancy is not separable from the material – one could no more contemplate a vibrancy detached from matter than contemplate the smile left over from the Cheshire Cat. Yet nor is it wholly subsumed into the material; it is not, for instance, a merely causal property whose impact is independent of the mind and imagination of the beholder. Aspect-dualism here again supplies the least-unsatisfactory account of the phenomenon and what it is for us to notice it.) For a wonder-filled exploration of the vibrancy of matter, and of how a kind of consolation is possible through understanding that we are built of the very calcium that was formed in the stars above our heads, see the extraordinary documentary about the Atacama desert, Nostalgia for the Light, by the Chilean film-maker Patricio Guzmán.55 It is a dizzying thought – literally as well as metaphorically. And if we really needed a reminder that, just as bodily events give rise to thoughts (think of worrisome conjecture in response to an unexplained symptom), so too thoughts give rise to bodily events (think of the erotic imagination, though please defer any extended consideration until after finishing this chapter), then the idea of a dizzying thought surely supplies it.

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Our Bodies as Objects And so at length – and here via Chile! – I reach an arena that (for me) irrefragably summons our sense of wonder. It is an arena that I have elsewhere started to sketch out56, 57 and it comprises aspects of reflection on our nature as embodied experiencing beings. Our bodies-as-objects sustain experience. It is worth letting this sink in from time to time. Faced with our finitude, there are obviously very many who rely on the thought of an immortal soul and, in consequence, the hope after death of accessing an experience that is independent of a body. So inconceivable is such an experience that an alternative hope, adhered to by those who look instead to the resurrection of the body in the life to come, seems modest by comparison. But if embodiment is necessary for experience, it is not sufficient. So far as we know, inanimate objects do not sustain experience (even if, as in the case of some computers, we have programmed them to mimic its expressions), and we presume that we share the phenomena of experience – and a universe accessible in experience – only with those other organic living creatures whose animation and behaviour strike us as consistent with it. Together with those other creatures, in our bodies-as-objects we proclaim that from a universe of cold, hard, material externalities there emerged at some stage of evolutionary complexity that extraordinary, intimate, felt interior reality that we call ‘conscious being’ – namely, ourselves (to take our own case from among perhaps uncountably many other cases) known from the inside. Extraordinary but also inalienable too: we have no choice in the matter – something chillingly explored in C. S. Lewis’s That Hideous Strength.58 Moreover, it is conspicuous that we share a world with indefinitely many other kinds of creatures whose perception of that world is, to some extent, and in some cases utterly, unlike our own. Confronting the fact that a moth’s world is not merely apprehended but actually constructed by its own peculiar perceptual apparatus should remind us that our world is equally constructed by our equally peculiar sensory complement. Yet since these are aspects of a shared reality, then we are (arguably) a special but (certainly) not an exclusive case of experiencing beings. As well as experience, our bodies are also the ground of our agency. We purposively move, lift, crush, build, nurture, dissect, condemn, pursue, ingest, flee from and collaborate with a myriad things in the world around us, including other examples of the sorts of things that we ourselves are. So, in their own way, do cats, sharks, bees and weaver birds. They are unable to reflect as we can on the puzzle of willed action, but this does not mean that their actions are unintended or haphazard. For them, no less than for us (albeit less vividly), their agency consists in actions known both externally by others and from the inside by themselves. A further curious aspect of our embodiment shared with the other animals is its finitude – we all wind down, inexorably, within remarkably reliable limits characteristic of each species. Biological finitude draws our attention to two existential puzzles. The first is that, although (I suggest) it is impossible to conceive of consciousness in wholly

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material terms, it arises apparently without non-material antecedents. The second, and counterpart, is that when we die, it apparently ceases without remainder – nothing is left that is knowable by either ourselves or others. That means that, even in the course of reading these lines, you inhabit a temporary spark that emerged from a prior blackness that was nothing to you, and that will be extinguished within a further blackness that will be nothing to you. Your continuity stretches in both directions from the rolling present, but in each direction it comes to a stop, beyond which it was and will be as though you had never been. (I have elsewhere tried to grapple with a miniature form of this shocking puzzle in contemplation of the idea of ‘experiectomy’ through memory-obliterating sedation.59)

Special Objects – But How Special? The position we have arrived at is this: we want to uphold a motivic concern of medical humanities: namely, to redress biomedicine’s tendency to objectify patients where that tendency means insufficiently attending to their individuality and their experience. But we also want to avoid replacing one form of reductionism with another, in particular to avoid disregarding or downplaying the objecthood of the patient. One would not wish to deny that patients are also more-than-objects. But to regard medicine’s error as viewing the patient as a mere object is in a sense to compound that error: no object is a ‘mere’ object in the dismissive sense of that phrase! What we need is a view of patients that does justice to their personhood and their objecthood alike – and is capable of coping with (if we think it really needs coping with) the taint of dualism that this way of putting the matter enjoins. We humans are both buoyed, and bounded, by the experience of material creatures – creatures who as objects know ourselves from the inside as well as the outside (we can, after all, see the more distant parts of our own bodies quite as well as others can see them, and in precisely the same way), who have agency, but who also have nonnegotiable beginnings and endings. Doubtless we are a special kind of animal; and that in turn makes us a special kind of object or thing. But how special? It seems to depend on what sort of a line one is moved to draw, and where one draws it. Let us briefly consider some possibilities. An obvious criterion for specialness might be rationality – much appealed to by those in medical ethics (John Harris is a prominent instance) who regard the capacity for autonomous rational choice as the chief marker of moral worth.60 By this criterion, we are pretty special; our shared experience is one that admits of the analysis of past actions, the conjecture of alternative possible future actions, and the capacity for reflective self-contemplation. Of course, it takes the operation of rationality to identify, and thus to value, the capacity for rationality. Even within medical ethics debates, what else follows from the specialness of rationality, and its inbound capacity to intend, is contested. Not all, for instance, think that moral worth (an evidently separate scale of specialness) is tied to rationality, either actual or potential, although within medical ethics debates this view is ordinarily held with regard to exceptional cases of particularly

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unfortunate human beings, and frequently by those holding human life in general to be special. It is the exceptions that trouble them rather than the broad attribution of specialness to humans, which they will tend to ground elsewhere in order to protect exceptional non-rational or pre-rational cases (such as the unborn child). So another conceivable criterion for what makes us special is sacredness – here, the extent to which our general (human) form of life can be held to be sacred. The evident difficulties, both of defining ‘the sacred’ and of demonstrating and defending the claim that some stake for humanity within the territory of the sacred, limit the appeal of this way of drawing the line. If, by contrast, your criterion for specialness is a more generous approach to experience as such, a capacity for experience that is not stipulated under forms of rationality, then our specialness is shared with abundantly many other creatures going all the way back almost as far as the sponge.61 The material world obtains for itself what I can only call ‘an experiential inside’, or a felt interior, very early on in evolutionary terms, and certainly a long way before you reach the capacity for rational choice. Drawing the line here encircles a very large class of experiencing creatures of a myriad different kinds – kinds that are mutually unintelligible for the most part, but sharing a world that somehow supports them all and supports their irreducibly different experiences of it. Contrasted with the experiences of other creatures, our rationality is joined by – or is expressed through – a further possible criterion. This is agency. It arises from our capacity for purposive intentional action that is moreover considered, deliberated. How special is this? Other creatures act, and they have needs and goals, and their actions may be directed towards those goals: their actions may, in the philosophical sense of the term, have intentionality, which is directedness. Certainly, this makes it as true of other creatures as of ourselves that their agency is not the same thing as causation: agency has the element of intentionality that is obviously missing from causation. What sets ours apart seems to be the aspect of contemplative choice, deliberative reflection. But agency is in one important sense not wholly detached from causation. Agency in the existential sense is possible only because causation is possible in the material sense.

Wonder Recalled This fusion of causation and agency, world and purpose, will and flesh, is for us the mode of our experience, and notably the grounding condition – as it were, the subjectmatter – both of what we call health and of what we call illness. But I believe it is also an enduring provocation to our sense of wonder. So where we draw the line of ‘specialness’ is, I think, influenced by, among other things, our susceptibility to a sense of wonder, and reflects the things that we are disposed to find wonderful. At all events, drawing the line distinguishes some objects – perhaps, ourselves – as special among other objects: in all cases their – and our – materiality is a part of the manner of their (or our) being special. The role of wonder in critical medical

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humanities includes at least a clarion call to us to remain mindful of our materiality, our object-ness, our thing-hood. We are, to recall, things that experience themselves from the inside and outside alike, in sickness and in health; no critique of medical reductionism can be adequate that does not begin from this recognition of our materiality. In short, our materiality, agency and finitude legitimately provoke wonder, and recognising this is of enduring value particularly within longitudinal forms of clinical medical practice, where practitioners must somehow engage ‘the lives of others’.

The Scope of the ‘Reverse’ Critique – and of Wonder’s Role in Critical Medical Humanities The ‘reverse’ critique upholds the aim of a standard medical humanities critique (challenging biomedical neglect of the patient’s experience) while refusing the standard critique’s unwitting neglect of the patient’s materiality. Putting our own house in order is a worthwhile undertaking, but does the reverse critique matter beyond medical humanities? In part this depends on whether medical humanities itself ‘matters beyond medical humanities’ – how big the house is, as it were, or less gnomically whether medical humanities’ business begins and ends with medical treatment. That would be, to say the least, a conservative view. An alternative and more ambitious view is that medical humanities concerns our broader understanding of what makes lives go well or ill, and thus a contextualised understanding of the varying scope and pertinence of different aspects (and conceptions) of medical interventions in our lives. In this case, then, the ‘reverse’ critique also has a wider bearing, reminding us that our materiality – together with the wonder that it can inspire – illuminates the other aspects of our flourishing. I hold this broader view, and I have come to think that an openness to wonder leads us to reconsider our flourishing, makes our flourishing newly present to us. Thus, I contend, an openness to wonder can play a critical role in critical medical humanities. But does an openness to wonder, or the engagement of a sense of wonder, distinguish ‘critical’ from conventional medical humanities? The simple answer is ‘yes’. If in conventional medical humanities wonder was confined to service as an ‘educational good’ in the nurturing of humanistic clinicians, then in critical medical humanities an openness to wonder animates our sense of the vibrancy of matter, including the matter that is ourselves – in and as our bodies – as patients, well or ill. This in turn allows us to be dissatisfied with simplistic opposition to medical reductionism, falling as it too easily does into replacing this first error with a second – superficially more benign, but in the long run doing no more justice than the first, in the face of the wondrous complexity and mystery that is our embodied experience.

Further Reading Jane Bennett, The Enchantment of Modern Life (Princeton: Princeton University Press, 2001); see ch. 7, ‘Ethical Energetics’.

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H. Martyn Evans, ‘Wonder and the Clinical Encounter’, Theoretical Medicine and Bioethics 33 (2012), pp. 123–36. Bryan Magee, Confessions of a Philosopher (London: Weidenfeld & Nicholson, 1997); see esp. ch. 1, ‘Scenes from Childhood’, and ch. 24, ‘Left Wondering’. Carl-Edvard Rudebeck, ‘The Body as Lived Experience in Health and Disease’, in Martyn Evans, Rolf Ahlzén, Iona Heath and Jane Macnaughton (eds), Medical Humanities Companion Volume One: Symptom (Oxford: Radcliffe Publishing, 2008), pp. 27–46. Stephen Toulmin, ‘Knowledge and Art in the Practice of Medicine: Clinical Judgement and Historical Reconstruction’, in Corinna Delkeskamp-Hayes and Mary Ann Gardell Cutter (eds), Science, Technology and the Art of Medicine (Dordrecht: Kluwer Academic Publishers, 1993), pp. 231–49.

Notes 1. Jane Bennett, The Enchantment of Modern Life: Attachments, Crossings, and Ethics (Princeton: Princeton University Press, 2001). 2. Ibid., ch. 7, ‘Ethical Energetics’. 3. David D. Raphael, Moral Philosophy (Oxford: Oxford University Press, 1994). 4. Immanuel Kant, A Critique of Pure Reason, 2nd edn (Riga: Johann Friedrich Hartknoch, [1781] 1787); many English editions – for example, ed. by Paul Guyer and Allen W. Wood, Cambridge: Cambridge University Press, 1999). 5. See Anne Whitehead and Angela Woods, ‘Introduction’, in this volume, pp. 1–31 (pp. 3–5). 6. Ibid. 7. Ibid. 8. Ibid. 9. Martyn Evans and David Greaves, ‘Exploring the Medical Humanities’, British Medical Journal 319 (1999), p. 1216. 10. Michael Bliss, William Osler: A Life in Medicine (New York: Oxford University Press, 1999), p. 461. 11. René Dubos, Mirage of Health: Utopias, Progress and Biological Changes (London: George Allen & Unwin, 1960). 12. Eric J. Cassell, The Place of the Humanities in Medicine (New York: Hastings Centre, 1984). 13. See Whitehead and Woods, ‘Introduction’. 14. Martyn Evans, ‘The Mind–Body Question’, in Pekka Louhiala and Svante Stenman (eds), Philosophy Meets Medicine (Helsinki: Helsinki University Press/Signe and Ane Gyllenberg Foundation, 2000), pp. 105–15. 15. Martyn Evans, ‘Medical Humanities for Postgraduates: An Integrated Approach and its Implications for Teaching’, in Deborah Kirklin and Ruth Richardson (eds), Medical Humanities: A Practical Introduction (London: Royal College of Physicians, 2001), pp. 61–72. 16. Martyn Evans, ‘The “Medical Body” as Philosophy’s Arena’, Theoretical Medicine and Bioethics 22.1 (2001), pp. 17–32. 17. Stephen Toulmin, ‘Knowledge and Art in the Practice of Medicine: Clinical Judgement and Historical Reconstruction’, in Corinna Delkeskamp-Hayes and Mary Ann Gardell Cutter (eds), Science, Technology and the Art of Medicine (Dordrecht: Kluwer Academic Publishers, 1993), pp. 231–49.

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18. P. Susan Stephenson and Gillian A. Walker, ‘Psychotropic Drugs and Women’, Bioethics Quarterly 2.1 (1980), pp. 20–38. 19. Jack Coulehan, ‘I Treat all my Patients Aggressively’, Journal of Medical Humanities 11.4 (1990), pp. 193–7. 20. Eric Cassell, The Nature of Suffering and the Goals of Medicine (Oxford: Oxford University Press, 1991). 21. Trisha Greenhalgh, ‘Narrative Based Medicine in an Evidence Based World’, British Medical Journal 318.7179 (1999), pp. 323–5. 22. Trisha Greenhalgh and Brian Hurwitz, Narrative-Based Medicine (London: BMJ Publications, 1999). 23. Raimo Puustinen, ‘Voices to be Heard – The Many Positions of a Physician in Anton Chekhov’s Short Story “A Case History” ’, Journal of Medical Ethics: Medical Humanities 26.1 (2000), pp. 37–42. 24. Jeremy Holmes, ‘Narrative in Psychiatry and Psychotherapy: The Evidence?’, Journal of Medical Ethics: Medical Humanities 26.2 (2000), pp. 92–6. 25. Rita Charon, ‘Narrative Medicine: A Model for Empathy, Reflection, Profession and Trust’, Journal of the American Medical Association 286.15 (2001), pp. 1897–902. 26. Alexandre Mauron and Micheline Louis-Courvoisier, ‘ “He found me very well; for me, I was still feeling sick.” The Strange Worlds of Physicians and Patients in the 18th and 21st Centuries’, Journal of Medical Ethics: Medical Humanities 28.1 (2002), pp. 9–13. 27. Sven Frederiksen, ‘Diseases are Invisible’, Journal of Medical Ethics: Medical Humanities 28.1 (2002), pp. 71–3. 28. Cecil Helman, ‘The Healing Bond’, Introduction to Cecil Helman (ed.), Doctors and Patients: An Anthology (Oxford: Radcliffe Medical Press, 2003); see esp. pp. 3–4. 29. Cassell, The Nature of Suffering and the Goals of Medicine, p. x. 30. Ibid., p. 137. 31. Charon, ‘Narrative Medicine’, p. 1897. 32. Fritjof Capra, The Turning Point: Science, Society and the Rising Culture (New York: Simon & Schuster, 1982; reprinted London: Fontana, 1983); see esp. pp. 118–19. 33. David B. Morris, Illness and Culture in the Postmodern Age (Berkeley: University of California Press, 1998). 34. Byron J. Good, Medicine, Rationality and Experience (Cambridge: Cambridge University Press, 1994); see esp. ch. 2. 35. Toulmin, ‘Knowledge and Art in the Practice of Medicine’. 36. David A. Greaves, The Healing Tradition: Reviving the Soul of Western Medicine (Oxford: Radcliffe Publishing, 2004), p. ix. 37. Ibid., p.149. 38. Marjorie Sirridge and Kathleen Welch, ‘Body Image and the Innocent Eye’, Journal of Medical Ethics: Medical Humanities 28.1 (2002), pp. 35–40. 39. Steve P. Wainwright and Bryan S. Turner, ‘Reflections on Embodiment and Vulnerability’, Journal of Medical Ethics: Medical Humanities 29.1 (2003), pp. 4–7. 40. Carl-Edvard Rudebeck, ‘The Body as Lived Experience in Health and Disease’, in Martyn Evans, Rolf Ahlzén, Iona Heath and Jane Macnaughton (eds), Medical Humanities Companion Volume One: Symptom (Oxford: Radcliffe Publishing, 2008), pp. 27–46. 41. H. Martyn Evans, ‘Wonder and the Clinical Encounter’, Theoretical Medicine and Bioethics 33 (2012), pp. 123–36 (p. 127).

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42. Thomas Mann, The Magic Mountain [1924], trans. Helen Tracy Lowe-Porter [1927] (London: Vintage, 1999). 43. H. Martyn Evans, ‘Wonder and the Patient’, Journal of Medical Humanities 36 (2015), pp. 47–58. 44. Martyn Evans, ‘Open Futures, Human Finitude’, in Jill Gordon, Jane Macnaughton and Carl-Edvard Rudebeck (eds), Medical Humanities Companion Volume Four: Prognosis (Oxford: Radcliffe Publishing, 2014), pp. 105–20. 45. Roy Porter, ‘What is Disease?’, in R. Porter (ed.), Cambridge Illustrated History of Medicine (Cambridge: Cambridge University Press 1996), pp. 82–117 (p. 95). 46. Mark Johnson, The Meaning of the Body (Chicago: Chicago University Press, 2007). 47. Christoph Rehmann-Sutter and Dana Mahr, ‘The Lived Genome’, in this volume, pp. 87–8. 48. David Bissell, ‘Placing Affective Relations: Uncertain Geographies of Pain’, in Ben Anderson and Paul Harrison (eds), Taking Place: Non-representational Theories and Geography (Farnham: Ashgate, 2010), pp. 79–97. 49. Beth Greenhough, ‘Vitalist Geographies: Life and the More-than-human’, in Anderson and Harrison (eds), Taking Place, pp. 37–54. 50. Ruth Leys, ‘The Turn to Affect: A Critique’, Critical Enquiry 37.3 (2011), pp. 434–72. 51. Evans, ‘Wonder and the Patient’. 52. Susan Blackmore, ‘She Won’t Be Me’, Journal of Consciousness Studies, Singularity Special Edition, 19 (2012), pp. 16–19. 53. Luna Dolezal, ‘Morphological Freedom and Medicine: Constructing the Posthuman Body’, in this volume, pp. 310–24. 54. David Herman (ed.), Animal Worlds in Modern Fiction: An Introduction, Special Issue of Modern Fiction Studies 60.3 (2014). 55. Nostalgia for the Light, film, Patricio Guzmán. New York: Icarus Films, 2010. 56. Evans, ‘Open Futures, Human Finitude’. 57. Martyn Evans, ‘Wonderful Treatment’, in Pekka Louhiala, Iona Heath and John Saunders (eds), Medical Humanities Companion Volume Three: Treatment (Oxford: Radcliffe Publishing, 2014), pp. 17–32. 58. C. S. Lewis, That Hideous Strength (London: Bodley Head, 1945). 59. Evans, ‘Wonderful Treatment’. 60. John Harris, The Value of Life (London: Routledge & Kegan Paul, 1985). 61. I owe this suggestion to Professor Robert Barton, Department of Anthropology, Durham University.

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20 MAN’S DARK INTERIOR: SURREALISM, VISCERA AND THE ANATOMICAL IMAGINARY Edward Juler

Introduction orn of the sociocultural effervescence that swept through Europe in the years following the First World War, Surrealism represented a profound disillusionment towards the established intellectual order that it held responsible for the dehumanising and violent depths to which civilisation had so recently sunk.1 Decrying the inadequacy of postwar philosophies and politics to deal with the new, brutalised world of the interwar period, the Surrealists loudly championed a revolution of perception by replacing the certainties of prewar thought with the unpredictable discontinuities of non-Euclidean geometry, the base materialism of Georges Bataille and, most especially, the dark visions of the human psyche that emerged through Freudian psychoanalysis.2 This reproof of the postwar status quo found particularly acute expression in graphic imagery of bodily evisceration. Metaphors conveying the scientific analysis of death, corporeal dismemberment and visceral abjection recur obsessively within the Surrealist lexicon: as much bodily ciphers of psychological interiority as representations of the profoundly dehumanising trauma of the First World War and its mechanised mutilation of bodies.3 Henri Michaux, for example, spoke vividly of a ‘great secret’ stashed away within the ‘crockpot [of the] stomach’ in an allusion both to the violent catalytic reactions taking place within the belly’s crucible and to the sense of unknowability, mystery and concealment that accompanied philosophical reflection on the body’s visceral regions.4 Elsewhere, the somatising links between innards and psyche were expounded by the writer and artist, Antonin Artaud, who identified within the body’s core an insurrectionary form of visceral abjectness that – in times of physical sickness or psychic trauma – threatened to engulf or otherwise consume the languid, somatic façade of the self in a black wave of feculent putrescence.5 His drawings – such as Poupou rabou . . . (1945) – emblematise this impression of corporeal insurgency by disassembling all sense of bodily narrative through a graphic burlesque of visceral disjuncture (Figure 20.1).6 The fragmentary, non-linear understanding of the body that such an image elicits emphasises how Surrealism can offer new perspectives on corporeal narrativity that

B

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Figure 20.1 Antonin Artaud, Poupou rabou, 1945. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Adam Rzepka. accord with contemporary reappraisals of the role narrative traditionally performs in the medical humanities.7 That much of this decentring of corporeal narrative occurs within Surrealism as a response to perceived or imagined psychosomatic discomfort (as a metaphorical embodiment of wartime trauma but also – and especially, in the case of Artaud – very real psychological disorder) equally proffers a psychophysiological viewpoint on the iconography of pain from which the medical humanities can obtain insight. As such, by taking interior sensibility as its starting point, this chapter provides a counterpoint to recent work on the physiognomic expression of pain,8 only here discomfort is explored psychophysiologically as an internal cipher of emotional disturbance and corporeal sensitivity: a weatherglass of gastrointestinal and visceral sensation. Needless to say, pleasure (pain’s agreeable counterfoil) plays a part in this story, complicating the psychodynamics of sexuality and corporeal sensibility within the body as they were envisaged in the 1920s, 1930s and 1940s. Corporeal interiority is a theme that resonates loudly with much recent work in the medical humanities, which has emphasised the ‘corporeal turn’ of modern historiography and the embeddedness of the body within the discursive parameters of a wide range of cultural praxes and regimes of knowledge.9 As Rachael Allen notes in her own contribution to this volume, the anatomised body affords the medical humanities an opportunity for critical reflection on society’s moral imperatives and the ethics

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that condition ‘our common experiences as living bodies and beings’.10 This chapter, then, will investigate an interwar shift within neuropathology and psychiatry towards a more psychodynamic model of selfhood and how this influenced wider sociocultural attitudes towards the body. It will examine, in particular, how the viscera were seen as the crucible of the subconscious. Such revisionist corporeal thinking will be positioned in opposition to contemporaneous hygienist theory, which recommended complete bodily control over the viscera and sanctioned a mechanistic form of physical regimen. Surrealism’s critical engagement with the schools of psychophysiology and psychoanalysis will thus be shown as a type of philosophical revolt that confronted rationalist faith in psychosomatic coherency through hypothesising a radically abject and decentred conception of selfhood that originated within the viscera. This will be subsequently examined in relation to the graphic work of Artaud and his interest in the abject, decentring qualities of corporeal interiority. The chapter will conclude with a discussion of how the study of Surrealism and art history more generally can offer new pathways for the medical humanities, estranging and defamiliarising conventional scholarly frameworks through productively combining different disciplinary perspectives while also attending to the deeper epistemological structures that can be unearthed by analysing non-verbal modes of expression.

Psychophysiology and Surrealism A post-Freudian school of neuropsychiatry, psychophysiology had developed through the work of the Viennese neuropathologist, Paul Schilder. Initially close to Freud, during the 1920s Schilder became interested in the biological foundations of self-knowledge and in 1935 published The Image of the Body – an interdisciplinary text that fused biology, psychoanalysis, neurology and psychology.11 The problem to which he applied himself was that of the psyche’s corporeal self-representation – how individuals constructed an image of their physical selves in the world: The image of the human body is the image of our own body which we shape in our mind; to put it another way, the manner in which our body appears to ourselves. Of the sensations which are given to us, we can see certain groups on the surface of the body; we have tactile, thermic and painful impressions; other sensations stem from the muscles and their sheaths [. . .]; the sensations which come to us from the enervation of the muscles; the sensations finally which reach us from the viscera [. . .]. By these sensations, we have the direct way in which there is a unity of the body. This unity is perceived, but it is more than a perception.12 In France, the most prominent exponent of the psychophysiological approach was the neuropsychiatrist, Jean Lhermitte. The Image of our Body (1939) drew explicitly upon Schilder’s earlier work, although Lhermitte’s focus on sensory perception signalled a closeness to phenomenology:13 How could we [he asked] act upon the external world if we were not in possession of a plan of our attitudes and position in space, if we did not possess in our mind the

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idea of our body. Thus one would not doubt that our activity is built on a psychophysiological foundation, which is none other than the image of our corporeal self.14 Naturally, psychophysiology had a close kinship with phenomenology. The postwar phenomenologist Maurice Merleau-Ponty, for example, admitted his debt to Lhermitte and Schilder on several occasions and, in both disciplines, corporeal experience unmistakeably foregrounds psychological self-knowledge.15 While Richard Schusterman maintains that Merleau-Ponty ‘hardly wants to listen to what the body seems to say about itself in terms of its conscious somatic sensations, such as explicit kinaesthetic or proprioceptive feelings’,16 Merleau-Ponty nevertheless specifically drew upon neuropsychiatric work in physiology as an anti-reductionistic contrivance: ‘Thus, to the question we were asking, modern physiology gives a very clear reply: the psychophysical event can no longer be conceived after the model of Cartesian physiology and as the juxtaposition of a process in itself and a cogitatio.’17 Divergence between psychophysiology and phenomenology is, however, prefigured in the latter’s attentiveness to somatic experience as part of a wider philosophical investigation of self-perception as opposed to psychophysiology’s explicit grounding of selfhood within the parameters of neuropathology.18 The themes of spatial location, self-perception and body image that obsessed Schilder and Lhermitte would find particular expression in the physician and Surrealist writer Pierre Mabille’s 1936 treatise, The Construction of Man. Mabille hypothesised that the body was regulated by psychophysiological rules that were based upon a quaternary subdivision of the human anatomy. He apportioned the body into an ‘osteo-muscular mass’, a ‘visceral mass’, a ‘cephalic extremity’ and a ‘genital extremity’. Of these it was the osteo-muscular mass and the viscera that operated in psychodynamic divergence to each other.19 Organised around the spine, the skin-clad frame of the osteo-muscular mass structured the body along a tubiform template, a sensitive medium of conscious communication that functioned in opposition to the maelstrom of subconscious energies that swirled within the visceral system: Thanks to the peripheral system, all the possibilities of [external] relations establish themselves [. . .]. It is there that consciousness puts up its scaffolding. Through it we gain knowledge of the world and by the limits that it grants us, of ourselves. [Our] intellectual, sensory [and] rational existence derive from this organisation. Contrastingly, the vital phenomena – the group of tendencies, desires and revulsions – are inherent to the operation of the viscera. In them resides our deep and subconscious reality.20 Allied to the post-Freudian corporeal theories of Schilder and Lhermitte, Mabille’s understanding of the viscera as the crucible of psychophysiological function echoed aspects of the late nineteenth-century experimental neurophysiology of Etienne-Jules Marey and Charles François-Franck, which had recognised the expenditure of bodily energy as part of a fluxional thermodynamic process.21 Distillation of energy was deemed fundamental to this thermodynamic model as physiologists questioned the processes that governed corporeal energy supply by investigating gaseous and faecal

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composition. Leading to a calorific theory of energy, this hypothesis appealed to mechanists, who saw it as proof of the body’s biomechanical nature as a ‘heat machine’.22 The reductionist implications of this approach became clear as biomedicine focused increasingly on analysing the operation of the component parts of the visceral system.23 Needless to say, Mabille’s position represented a complete disavowal of this type of scientific rationalism.24 Instead, he posited an anti-reductionist schema whose incorporation of psychophysiological principles mirrored those irrational values that Surrealism championed in Freudian psychoanalysis.25 As we will see, this radically psychodynamic understanding of corporeal selfhood patently rejected mechanistic approaches to mind–body dualism in ways that undermined contemporaneous hygienist perceptions of the body as a consciously malleable entity.

The Hygienist Body and the Visceral Unconscious A wartime health handbook by the hygienist writer Charles Fernet expounded that the living body was effectively an economy of exchange in which nutrients were converted into energy and organic material by the viscera: Life is only supported by a continuous exchange of matter between the living being and the external world: it is a maelstrom in which elements of the being ceaselessly renew themselves, via a process of destruction and regeneration that takes place every instant; to put it another way, the substance of the living body is subject to a continual movement of composition and decomposition which constitutes nutrition; the organism only maintains the condition that it borrows from the matter of the exterior world and to which it returns this matter after having made use of it.26 A comparison can be made between Fernet’s model of the alimentary system and Mabille’s envisagement of the gastrointestinal tract as a vessel in which digestive forces converted nutriments into energy through absorptive and assimilative processes. At each stage of digestion, imbibed material progressively lost its shape, releasing energy until it finally became inert. Whilst this sluggish, organic filtrate was destined for excretion, within the ‘interior circuit’ of the body a contrary, ‘ascending’ motion took place, which swept up any purified matter, forcing it to ‘leave its old forms’ so as to ‘acquire a new form, specific to the individual, and to become its flesh’.27 Hygienist mantra stressed a close connection between external appearance and the vital function of the internal organs. A 1933 article by C.-C. Pagès explained how renal filtration could be boosted by heightening, through exercise, the body’s cardiovascular flow. Due to the kidney’s role in purifying blood, renal health was deemed integral to personal well-being, internally supporting the hard-edged carapace of musculature that was so desired by the bodybuilding confraternity.28 Indeed, the types of exercise recommended by hygienists to improve blood circulation and the preservation of internal organs seemed designed to result in precisely the vigorous, Classical body that was promoted as a remedy to modernity’s ills: ‘To obtain the maximum of [cardiovascular] work with the minimum of effort and especially exhaustion one must insist upon large

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medium-sized weights, and to lift them using the bodily postures most favourable to the functioning of the viscera.’29 Fear of the viscera spilling out and destroying the integrity of the body’s muscular panoply troubled the hygienist imagination, as it jeopardised the strength of a psyche that ordered itself along principles of corporeal control. As Edmond Desbonnet stated, hygienist exercise had as its goal a corporeal ‘equilibrium [that was] as much mental as muscular’.30 One article cautioned watchfulness in the preservation of the entrails’ muscular sheath: ‘The viscera [of the] stomach [and] intestines are supported [. . .] by the muscle tone of the abdominal wall, which forms, in a normal subject, a padded cushion upon which we stand vigil.’ Any lapse in vigilance could allow the body’s visceral pressures to exceed the limits of the abdominal wall’s tensile capacity, causing the abdominal muscles to slacken and ‘the viscera in question to fall’: a breach of somatic boundaries that led to an insalubrious host of hypertrophied bodytypes, which resulted from poor gastrointestinal and visceral maintenance (such as the distended, fluid-filled bellies stemming from ‘ascites’, ‘abdominal tumours [and] repeated pregnancies’).31 Above all, the hygienist body represented the conquest of willpower over unthinking corporeal matter. Inasmuch as physical educationalists admitted to a link between physiology, mental life and overall bodily health, it was the conscious mind that exerted its shaping will over the clay of the body, the hard-edged musculature of the athletic corpus signifying a hygienic, well-ordered mentality that had tamed the vortex of visceral impulses that swirled within the body’s interior, imperilling, at any moment, the psychosomatic orderliness of the physique. Pierre Chevillet, an advocate of a hygienist regime, explained to readers that: Externally suppressed by the force of social conventions, the emotional storm bursts in the organs. If their anatomy is robust, this tempest will not destroy their physiology. If [their] histological structure cannot resist the moral shockwaves, [their] health will collapse [. . .]. Organs, without sufficiently developed muscles, will not have the energy to resist mental reactions.32 In his exploration of the psychological image of the human body, Schilder emphasised the way in which fluctuating gastrointestinal sensations coexisted alongside other visceral impressions, flummoxing any conscious sense of corporeal intelligibility by replacing it with an amorphous quagmire of psychosexual sensibility. Indeed, what enhanced the symbolic value of the entrails was the spatial proximity of the organs within the abdomen; a psycho-anatomical quirk that created a type of sensory confusion in which pleasure or discomfort could be transferred, unknowingly, from one organ to another: It appears that all our internal sensations are also localized in [a] sensitive zone several centimetres under the surface of the body. The sensation of [bodily] satisfaction and well-being has several foliated extensions in the region of the stomach. Stomach pains originate from [the] same point, that which links itself up to the anus, when there is the sensation of indigestion.33

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Schilder believed that this anatomical hypersensitivity heightened the sexual importance of the genitalia within certain pathological mentalities who overdetermined the eidetic significance of the viscera when responding to the flux of fluid pressures. For Mabille, such concerns corresponded with the larger, psychosomatic sense in which the entrails were the ‘interior, unconscious, core [of the body], stemming from visceral function [which] acts like an energy transformer. It forms the currents termed tendencies, needs, desires, disgusts, intolerances.’34 This internal dynamism was expressed and interpreted by the corporeal superstructure that clothed the ebb and flow of the emotions ‘in ideas, in images, in concepts. Thanks to this re-dressing, they enter into contact with the universe of men and things.’35 Inasmuch as psychophysiology appeared to accord with the hygienist view that the body’s peripheral frame provided a ‘stable and supple edifice’ upon which the self could find intelligible expression, it none the less poured cold water on the idea that corporeal management alone could rectify overly sensitive viscera or physically mould the psyche to the body’s muscular exigencies. In contrast to Chevillet’s imposition of a willpower over the emotionality of the viscera, Mabille saw the body’s deep interior as the durable seat of the ‘true, unconscious’ self, a region that was fundamentally a ‘foreign environment: part air, part contents of the digestive tract’: the dominion of ‘the most primordial vital processes’ and, implicitly, a bodily realm that lay beyond the remit of conscious control.36 As we will see, the sense of psychosomatic estrangement that resulted from such a psychophysiological reading of selfhood – in which the self bobbed unsteadily upon the body’s visceral tides – appealed particularly to those Surrealist writers and artists who took umbrage at hygienist claims that the body could be self-consciously fashioned into the corporeal paradigm of a well-integrated ego.

Surrealism, Base Materialism and Visceral Abjection Conceived as a festering cauldron of unconscious desires, endocrine flows and sanguineous currents, the visceral system proffered a fulminous alternative to the hygienist image of the body. To the Surrealists especially, the lubricity of the body’s subcutaneous provinces – in which hormones, appetites and digestive juices freely waxed and waned – volunteered a challenge to the hygienist claim that all bodies, correctly managed, could acquire the polished, well-toned appearance of an antique cuirass. The Surrealist philosopher, Georges Bataille, pictured such unpredictable, serous exudations as desublimatory filaments that dragged the imagination, unwillingly, down into the darker depths of human existence, where humanity’s reified self-image was engulfed by the turbulent, somatic waters of involuntary sensations and instinctive dynamisms: The vicissitudes of organs, the profusions of stomachs, larynxes, and brains traversing innumerable animal species and individuals carries the imagination along in an ebb and flow it does not willingly follow, due to a hatred of the still painfully perceptive frenzy of the bloody palpitations of the body. Man willingly imagines himself

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to be like the god Neptune, stilling his own waves, with majesty; nevertheless, the bellowing waves of the viscera, in more or less incessant inflation and upheaval, brusquely put an end to his dignity.37 The amorphous character of the viscera thus endangered humanity’s sense of bodily identity as it undermined the ego’s fastidiously engineered psychical coherency, threatening to overrun the boundaries of selfhood with the sanguinary liquids, expectorated fluids and excreted substances that, due to their hidden or jettisoned nature, existed outside of the self, at the threshold of psychosomatic meaning where the sublimity of the ‘I’ was sustained through that which it subconsciously denied, that which it opposed.38 This oppositional dichotomy, set between the intestinal and endocrine reality of the entrails and the fictive, self-assured character of the psyche, owed its first conceptualisation to Freud, who, in a foreshadowing of Bataille’s ignoble speculations, saw the mind as beholden to competing impulses, any imbalance of which – especially in terms of the psychosomatic effects of displeasure – led to a rupturing of psychical decorum. Unbearable tensions emerged in the psychical apparatus due to a surfeit of disagreeable psychological stimuli, which the mind attempted to rebalance by increasing its mental store of pleasure.39 Occasionally, excessively powerful forces of mental agitation penetrated the psyche’s protective mechanism, provoking ‘a massive disturbance in the organism’s energy system’ that resulted in traumatic neurosis.40 While these harrowing excitations occasionally stemmed from external sources, the most dangerous kind emerged from those unconscious, secreted dominions within the soma itself, against which the hapless ego had little in the way of defensive machinery: The fact that the stimulus-receiving cortical layer lacks any shield protecting it against excitations from within must presumably mean that these stimuli acquire greater economic importance, and often give rise to economic dysfunctions, which are equitable with traumatic neuroses. The most abundant sources of such excitation from within are the organism’s so-called drives, which represent all those manifestations of energy that originate in the inner depths of the body and are transmitted to the psychic apparatus [. . .].41 These inner drives held the psyche in bewildering thrall to excitatory consistency; the child or neurotic patient was compelled endlessly to repeat actions or recall memories of both a pleasing and unpleasant nature, so much so that a ‘daemonic compulsion’ towards repetition appeared to be a central part of the psyche’s instinctual makeup. To explain this pathological urge, Freud hypothesised a universal attribute of involuntary drives, which, he maintained, embodied the quintessence of organic life itself: ‘A drive might accordingly be seen as a powerful tendency inherent in every living organism to restore a prior state, which prior state the organism was compelled to relinquish due to the disruptive influence of external forces.’42 This organic inertia not only was conservative but also gave the lie to the notion that it was life’s goal to accomplish evolutionary progress:

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If we may reasonably suppose [. . .] that every living thing dies – reverts to the inorganic – for intrinsic reasons, then we can only say that the goal of all life is death, or to express it retrospectively: the inanimate existed before the animate.43 Yet, if the flame of life was originally kindled in the dull embers of inanimate material – and it was to this deathlike state that all life, ultimately, sought to return – it countermanded this thanatic impulse through the production of germ cells, which worked ‘in opposition to the death of living matter, and [succeeded] in giving it what in our eyes must seem like potential immortality’ by sanctioning the perpetuation of the genetic stock through procreation.44 In Freud’s eyes, the vital ‘woof’ of the life-drive, Eros, thus ran counter to the necrotic ‘warp’ of the death-drive, Thanatos: It amounts to a kind of fluctuating rhythm within the life of organisms: one group of drives goes storming ahead in order to attain the ultimate goal of life at the earliest possible moment [the inorganic], another goes rushing back at a certain point along the way in order to do part of it all over again and thus prolong the journey.45 Buffeted by the crosswinds of Eros and Thanatos, the state of incessant flux to which the ego was subject flowed most forcibly from the corporeal forces that swept through the body’s visceral undercarriage and which impressed deeply upon the psyche the agony and the ecstasy of life’s embodied duality.46 In Freud’s opinion, consciousness of selfhood’s corporeality thus originated – in a foreshadowing of Bataille’s desublimatory meditations – as much from pain and ‘the bloody palpitations of the body’ as it did from the peaceable, regulatory operation of the blood stream, organs and epidermal membranes: Pain [plays] a role in this, and the manner in which we gain a new awareness of our organs when we suffer painful illnesses is perhaps paradigmatic for the way in which we arrive at our notion of our own body.47 For Bataille, corporeal sensibility served as an astringent reminder of the potency of the life-drives (and their thanatic Doppelgänger, the death-drive) and of the ultimate ignobility of humankind. A calloused toe was hence capable of recapturing humanity’s ‘obscure baseness’, its grotesque appearance giving ‘a very shrill expression of the disorder of the human body, that product of the violent discord of the organs’.48 This vision of a morbidly debased body expressly snubbed the idealist pretentions of materialist philosophers who, all too often, favoured pigeon-holing objects according to purely formalist criteria, choosing the positivist ‘conformity of dead matter’ over the heterogeneous, unruly vagaries of physical reality.49 The bankruptcy of traditional notions of materialism stemmed not only from their naïveté but also from their reluctance to account for new analytical methods emerging from psychology and psychoanalysis: ‘Thus it is from Freud, among others [. . .] that a representation of matter must be taken.’50 Matter – when Bataille conceives of it, dwelling within the body’s interior as so much corporeal egress – is precisely that which enables a thorough discrediting of the customary materialist position as it divulges, in somatic terms, the illogicality of a

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binary viewpoint based upon the philosophical ‘division of the universe into subterranean hell and perfectly pure heaven’.51 Essential to life’s vital principles yet, none the less, morally vilified for their lowly character within the body’s metaphysical hierarchy, the entrails were hence not simply anatomical embodiments of Bataille’s conception of base materialism – that which disrupted all philosophical categories through generating ‘a back and forth movement from the refuse to the ideal, and from the ideal to the refuse’ – but also, due to their shapeless and vicissitudinous nature, the personification of his anti-classificatory concept ‘formless’. Simply put, the formless was that which defied all attempts at classification; it was the epistemologically limbic, the semantically fluid, that which occupied the shadowy hinterland of scientific groupings, suborning the identity of things:52 ‘To affirm [. . .] that the universe resembles nothing at all and is only formless, amounts to saying that the universe is something akin to a spider or a gob of spittle.’53 As we will see, Bataille’s theories of formlessness and base materialism hold particular resonance for Artaud’s graphic images of the human body in which selfhood is unpicked and interrogated through a visual language of corporeal evisceration and narratological decentring.

Artaud and the Autoscopic Eye Nothing better exemplifies the disordering potential of the formless than the body’s liquescent interior, laden with gelatinous, sludge-filled organs. Once stripped of its shaping flesh, the corpus becomes a ghastly, structureless echo of its previous self: a formless, suppurating negative to the shapely, skin-clad effigy of its positive incarnation. Whereas, for Freud, the intelligible self is a stable, conscious entity composed of the ‘coherent organization of the psychic processes present within each individual’, manifesting itself externally as the ‘projection of a surface’,54 its constancy is undermined – in the words of Julia Kristeva – by the unspeakable horror of the body’s interior: If it be true that the abject simultaneously beseeches and pulverizes the subject, one can understand that it is experienced at the peak of its strength when that subject, weary of the fruitless attempts to identify with something on the outside, finds the impossible within; when it finds that the impossible constitutes its very being, that it is none other than abject.55 For Artaud such philosophical concerns formed the conceptual backbone of his artistic practice. Incarcerated in a psychiatric institution for much of the 1940s, he produced a series of drawings that forcefully disassembled the anatomical configurations of the human body so as to question its privileged status as a reified object in the cultural imagination.56 In this task, Artaud believed himself to be the herald of a new type of body that, as Ros Murray has suggested, offered an ‘antidote to repressive representative forms that preserve the external image of a complete and undamaged body of the author or artist, maintained at a safe distance from the work’.57 If, to paraphrase Paul Macneill, ‘provocative art’ practice can act as a critique of predominant medical paradigms by

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throwing into question ubiquitous suppositions regarding medicine and the body,58 then Artaud’s surreally inflected illustration of corporeal interiority epitomises this interrogative potentiality by confronting long-established mechanistic bodily principles through a visual language of psychodynamic disintegrity that is drawn from the pathological casebooks of psychophysiology. Centre-stage in Artaud’s violatory depictions of the body is the impression of its base materiality. Exudatory inner structures – rendered in garish, pencilled-in technicolour – shine through insubstantial corporeal forms: peculiar, fleshful organs that dissipate the miasmal fog of the body’s outer tissues by the dark light of their abject digestive, reproductive and purgative processes. In one undated sketch – The Hanged Woman – the soma is portrayed as parchment-thin: a gauzy envelope within which a tubular, girder-like form appears to defecate, all the while framed by radiating lines of an emphatically excremental brown (Figure 20.2). Surrounded by a blood-red halo, this gastrointestinal organ assumes the position of a surrogate icon: an idol of perversity, whose ornate, penetralian temple stands in purposeful opposition to the see-through, empty canopy of the body’s upper regions. A text, contemporaneously penned by Artaud, provides an appropriately scatological interpretation of this tapering duct, which sluices egesta from the body’s sarcous pipework:59 ‘Within the instrument [. . .], this central tube of expulsion, this skeletal rib where things [slip] like a stone falls, the telescope, unresolved, here, by this cloudfilled gulf, melds.’60

Figure 20.2 Antonin Artaud, The Hanged Woman, undated. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Georges Meguerditchian.

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The autoscopic undercurrents of Artaud’s commentary echo the pathological case studies of psychophysiology; the all-seeing, scopophilic fantasy of an eye – sitting squarely within the viscera – which fragments the body’s integrity even as the beholder anguishes over its precipitous dissolution. For example, in The Image of our Body, Lhermitte wrote of ‘autoscopy’ as a psychological predisposition to envisage the body from within, sufferers of this immiserating condition being able to describe, in hysterical detail, the shape and structure of their internal organs: the lungs, liver, stomach, intestine, kidneys, heart and so on.61 ‘Sometimes the vision is interior,’ observed Lhermitte, ‘sometimes it exteriorises itself’: The subject claims to have something akin to an eye in the stomach [. . .], another sees his viscera as though in a mirror, still another claims to examine himself by means of [his] translucency. But the majority of subjects agree on the point that they appear to watch and see their body from the inside.62 Lhermitte’s neuropsychiatric terminology resonates with Artaud’s autoscopic imagery.63 Organs topple from diaphanous bodies, shred apart by Artaud’s pathological gaze, only to be left, pendulously suspended, in mid-air. In Couti – The Anatomy (1945), a chamfered vessel – part alimentary tract, part procreative system – casts off wormy, intestinal forms: fistulous dejecta, which function as symbolic, externalised impressions of a pathogenic, interior reality (Figure 20.3).

Figure 20.3 Antonin Artaud, Couti – The Anatomy, c. 1945. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Christian Bahier/Philippe Migeat.

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Tellingly, the psychologically redolent theme of a hypermetropic inner eye, replacing ocular vision, recurs repeatedly in Artaud’s commentaries on his drawings. Astigmatic and greyly clouded with age, the ophthalmic organ appears as perceptually degenerate, misshaped and subjugated by the psychosomatic exigencies of the body’s anatomy: I mean that we have corneal opacity so that our actual ocular vision is deformed, suppressed, oppressed, regressed and suffocated by certain malpractices on the principle of our skull, as in the dental architecture of our being, from the coccyx at the base of the vertebra, to the seat of the jaw’s forceps sustaining the brain.64 Contrastingly, it is the perspicacious sight of the autoscopic eye that enables Artaud to transcribe his experiences of bodily sensation effectively. A pencil sketch of a spread-eagled stickman provides occasion for Artaud to picture body parts bereft of their anchorages – lungs rendered schematically as free-floating boxes, a sundered vein zigzagging frenetically across a voided whiteness – experiential ciphers of corporeal interiority (Figure 20.4). In this case, Artaud’s commentary is particularly insightful: A man falls into nothingness and, in falling, steals from another man the breathboxes of his lungs [. . .]. Vein, a single vein and not two, and around the vein the white page, a vein dragged from an awareness, fabric of a single bat of an eyelash

Figure 20.4 Antonin Artaud, Death and Man, c. April 1946. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Philippe Migeat.

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[. . .]. In looking at [this drawing] closer, I would like one to find in this space of retinal detachment, this sensation that is practically a detachment of the retina that I had in shedding the skeleton at the top of the page, like a stand-in for an eye. The skeleton up high without the page with its stand-in in my eye.65 Respiratory organs as air-filled crates, tubiferous gastric passages, skeletal structures as surrogate eyes: the imagistic, diagrammatical character of Artaud’s viscerous insights approximates closely Lhermitte’s description of the visionary language of the autoscopic imagination: Not being anatomists and, consequently, provisioned with a technical language adapted to the expression of their visions, victims of internal autoscopy generally use comparisons to conceptualize their impressions: Muscles and tendons are ropes [. . .] the ovary is a little sack [filled] with grain [. . .], the vagina is a large pipe [. . .], the bronchial tubes are branches of coral.66 Expressively rich, it is hardly surprising that Lhermitte identifies such autoscopic descriptions as evidence of a poetic imagination pathogenically overburdened by the phenomenological inconstancy of somatic consciousness. Autoscopic vocabulary, in this way, ‘unveils the internal structure of the body, the muscles, the skeleton, the internal image of our fleshy body’.67 As a process of psychological disclosure, Artaud’s autoscopic prescience divulges the body’s sanguineous interior in ways that meaningfully overlap with Lhermitte’s speculations on the revelatory power of visceral imagery. Bodies split asunder with organs prodigiously ribboning, pictures such as The Sexual Awkwardness of God (1946) purposefully disclose the entrails as symbols of corporeal decay; in the words of the writer Michel Leiris, the sight of viscera, ‘terrible for some people, [thus] causes us to take one further step in the direction of intensifying our human consciousness’ (Figure 20.5).68 Here, the antagonistic crosscurrents of Eros and Thanatos fragment the embodied fabric of the artist’s ego, unravelling the corporeality of the viscera in a primal fantasy of death and rebirth.69 Of this sketch Artaud wrote: The death of all which waits while God makes his nonsense at the level of his stomach the instruments which he does not know how to use. Themselves clumsily drawn, for the eye which observes them falls [. . .]. Without a soul on this bed lays my body which finally after life believes itself to be a child [. . .] 70 Considered as impotent tools revealed by the autoscopic gaze, the ‘god’s’ eviscerated sexual organs thus become eidetic ciphers of the abjection into which the pathological subject has sunk;71 they express the formless horror of the viscera, its essential deathliness even as it embodies life’s most vital processes. Here, then, the unshapen nature of the entrails, their base materiality – visually expressed by the seeping, shadowy fragments that play across the open belly of the god – communicates a powerful sense of Bataille’s anti-idealist corporeal materialism. Amorphous yet vital, Artaud’s visceral imagery discloses the psychophysiological instability of an ego riven by the revelation

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Figure 20.5 Antonin Artaud, The Sexual Awkwardness of God, c. 1946. Photograph © Centre Pompidou, MNAM-CCI, Dist RMN-Grand Palais/Adam Rzepka. that both its point of origin and future reside within the festering morass of the body’s dark interior. Under the baleful gaze of the autoscopic eye, selfhood is seen to recognise its own sense of corporeal abjection: the horror ‘that does not separate inside from outside but draws them the one into the other indefinitely. Artaud is the inescapable witness of that torture – of that truth.’72 Visceral alterity, of the sort imaged by Artaud’s graphic scrawls, thus operates as a kind of disavowal of the hygienist (and, correspondingly, materialistic) body as, within its parameters, the soma’s psychosomatic integrity is pulled apart at the seams.73 For it is here, in the Stygian dusk of the entrails, that the deliquesced frontiers of the self express their psychical otherness and physical estrangement from the mind’s conscious self-image. A fluid, psychodynamic comprehension of the body in this way emerged in Surrealist art and philosophy as a mechanism through which conventional sociomedical notions of selfhood could be questioned, contested and disassembled.

Conclusion Paul Macneill suggests that one ‘of the more compelling arguments for a role for the humanities in medicine is to provide critical reflection on assumptions and predominant “taken-for-granted” metaphors of medicine and the healthcare professions more generally’.74 To this we can add the role ‘provocative art’ can play in

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de-familiarising current historiographic and medico-scientific methods of looking and explaining. As we have seen, marrying together art history and the history of medicine can bring about radically new ways of thinking about the historiographies of both disciplines by shedding fresh light on the sociomedical conventions that govern our understanding of the relationship between body and mind. If, for example, a mechanistic conception of the body-as-machine continues to dominate current medical knowledge,75 then Surrealism provides an authoritative counternarrative to this reductionist metaphor by showing how a mechanistic vision of the body – prevalent in hygienist circles – was opposed by a new psychophysiological model that questioned psychosomatic integrity through a psychodynamic theory of selfhood. As Rachael Allen contends, interdisciplinary work in the medical humanities is a form of knowledge exchange where ideas and interests ‘overlap and intersect’, and disciplinary entanglement offers practitioners creative alternatives to well-worn disciplinary paradigms.76 If the main objective of the medical humanities is, as Ludmilla Jordanova has argued, to act as a conceptual bridge between medicine and other disciplines, then the lessons that medical history – which traditionally has paid ‘little or no attention to visual culture’ – can receive from art history are manifold.77 Unquestionably, as medical practice implicitly requires visual skills to be applied to the representation and interpretation of the human body (not least in terms of apprehending anatomical illustration, X-ray imagery and so on), interdisciplinary collaboration between the visual arts and medicine is vital for understanding the operation of visual phenomena within biomedicine and its histories.78 In this task, Surrealism’s incorporation of medical imagery into its visual and verbal lexicon offers the medical humanities precisely the sort of disciplinary intertwining that will ‘radically expand and destabilise understandings and perceptions of the body’.79 Mabille himself called for this type of multi-disciplinarity as an antidote to the scientific reductionism of his day: [If] we seek to sensitively grasp the character of our interior [he noted] [and] the nature of our emotional relations we are led into the domain of Art. ‘Artistic’ expression differs only from other forms of thought by a less conscious and more spontaneous process [of working]; [Art] has its own means of understanding and appreciating the Universe.80 Critical assessments of the role narrative performs within the medical humanities tender a position from which Surrealism, in particular, can proffer startlingly new interpretative standpoints.81 Scholarship that favours narrative as a linear, embodied, temporal and subjectively empowering discourse is, for example, powerfully countermanded by Artaud’s turbulent imagery of psychosomatic disintegration. Certainly, if narrative ‘comes apart at the extremes’,82 especially in moments of pain, then Artaud’s preoccupation with corporeal disassembly evinces a discontinuous discursive structure that resonates strongly with contemporary work in the medical humanities that challenges the restrictions imposed by normative understandings of narrative structure. Framed by Artaud’s own experience

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of mental illness, his drawings resist conventional narratives of illness and corporeal selfhood by transforming the body into a site of both socio-institutional subjugation and revolt that forms, and is formed by, its visceral representation.83 This sense of narratological disruption is sustained through the facture of the images themselves, their rough-and-ready aesthetic, their multimedia nature and dense overworking of anatomical forms. For Jacques Derrida, Artaud’s expressive struggle (the way in which language and material, corpus and word interweave and exceed the limits of established narrative within the drawings) is inherently chimerical, a destabilising mingling of form ‘with everything it is not’.84 Here, then, Artaud’s psychologically charged vision of psychosomatic evisceration finds expression through a medium that denies narratological coherency and straightforward iconographic readability. In their place a non- or pre-verbal language of graphic alterity is figured that undermines the structure of rational thought by representing that which is linguistically inexpressible: the haptic, the material, the optical and, above all, the visceral.85 It is the ability to critically examine the meanings of this kind of non-verbal discourse that art history therefore offers the medical humanities and which, at a time when the discursive margins of experiential narrative within medicine and healthcare are being rapidly redrawn, has never been more important.

Acknowledgements The author gratefully acknowledges the support of the Wellcome Trust in the preparation of this chapter. He is particularly grateful for the Trust’s assistance in covering the cost of images.

Further Reading Georges Bataille, ‘The Big Toe’, in Georges Bataille, Visions of Excess: Selected Writings, 1927–1939, trans. Allan Stoekl (Minneapolis: University of Minnesota Press, [1929] 1985), p. 22. Jacques Derrida and Paule Thévenin, The Secret Art of Antonin Artaud, trans. Mary Ann Caws (Cambridge, MA, and London: MIT Press, [1986] 1998). Julia Kristeva, Powers of Horror: An Essay on Abjection, trans. Leon S. Roudiez (New York: Colombia University Press, [1980] 1982). Jean Lhermitte, L’Image de notre corps (Paris: Editions L’Harmattan, [1939] 1998). Amy Lyford, Surrealist Masculinities: Gender Anxiety and the Aesthetics of Post-World War I Reconstruction in France (Berkeley and London: University of California Press, 2007). Paul Macneill, ‘The Arts and Medicine: A Challenging Relationship’, Medical Humanities 37 (2011), pp. 85–90. Ros Murray, Antonin Artaud: The Scum of the Soul (Basingstoke and New York: Palgrave Macmillan, 2014). Joan Tumblety, Remaking the Male Body: Masculinity and the Uses of Physical Culture in Interwar and Vichy France (Oxford: Oxford University Press, 2012).

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Notes 1. See Dawn Ades, Dada and Surrealism Reviewed (London: Arts Council of Great Britain, 1978), pp. 161–2. 2. See Sidra Stich, Anxious Visions: Surrealist Art (New York: Abbeville Press, 1990), p. 11. On the role of non-Euclidean geometry in Surrealism, see Gavin Parkinson, Surrealism, Art and Modern Science (New Haven, CT, and London: Yale University Press, 2008). On the influence of psychoanalysis on Surrealism, see David Lomas, The Haunted Self: Surrealism, Psychoanalysis, Subjectivity (New Haven, CT, and London: Yale University Press, 2000). 3. Amy Lyford, Surrealist Masculinities: Gender Anxiety and the Aesthetics of Post-World War I Reconstruction in France (Berkeley and London: University of California Press, 2007), esp. pp. 3–11. See also Deanna Petherbridge, The Quick and the Dead: Artists and Anatomy (London: South Bank Centre, 1997), p. 58, and Lomas, The Haunted Self, pp. 30-3. 4. Henri Michaux, ‘Le Grand Combat’, L’Espace du dedans (Paris: Gallimard, [1927] 1966), p. 14. 5. On Artaud and abjection, see Julia Kristeva, Powers of Horror, trans. Leon S. Roudiez (New York: Columbia University Press, 1982), pp. 25–6. 6. For an introduction to Artaud’s drawings, see Paule Thévenin, ‘The Search for a Lost World’, in Jacques Derrida and Paule Thévenin (eds), The Secret Art of Antonin Artaud, trans. Mary Ann Caws (Cambridge, MA, and London: MIT Press, [1986] 1998), pp. 22–9. 7. See, for example, Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, Medical Humanities 37 (2011), pp. 73–8. 8. See Suzannah Biernoff, ‘Picturing Pain’, in this volume, pp. 163–84. 9. See Ivan Crozier, ‘Introduction’, in I. Crozier (ed.), A Cultural History of the Human Body in the Modern Age, vol. 6 (London and New York: Bloomsbury, 2010), pp. 1–4. 10. Rachael Allen, ‘The Body Beyond the Anatomy Lab: (Re)addressing Arts Methodologies for the Critical Medical Humanities’, in this volume, p. 187. 11. François Gantheret, ‘Avant-propos’, in Paul Schilder, L’Image du corps, trans. François Gantheret (Paris: Gallimard, [1935] 1968), pp. 8–9. 12. Schilder, L’Image du corps, p. 35. 13. See Jacques Chazaud, unpaginated ‘Préface’, in Jean Lhermitte, L’Image de notre corps (Paris: L’Harmattan, [1939] 1998). 14. Lhermitte, L’Image de notre corps, p. 11. 15. On Lhermitte’s influence on Merleau-Ponty, see Albert Rabil, Merleau-Ponty: Existentialist of the Social World (New York and London: Columbia University Press, 1967), p. 28. MerleauPonty references Lhermitte and Schilder several times in The Phenomenology of Perception. 16. Richard Schusterman, ‘The Silent, Limping Body of Philosophy’, in Taylor Carman and Mark B. N. Hansen (eds), The Cambridge Companion to Merleau-Ponty (Cambridge: Cambridge University Press, 2005), p. 151. 17. Maurice Merleau-Ponty, The Phenomenology of Perception (New York and Oxford: Routledge, [1945] 2002), p. 102. 18. For an introduction to the philosophical diversity of phenomenology, see Taylor Carman and Mark B. N. Hansen, ‘Introduction’, in Carman and Hansen, The Cambridge Companion to Merleau-Ponty, pp. 1–23. 19. Ibid., p. 26. 20. Ibid., p. 31.

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21. See Anson Rabinbach, The Human Motor: Energy, Fatigue, and the Origins of Modernity (Berkeley: University of California, 1992), pp. 66–8. 22. Ibid., pp. 126–7. 23. See Ian Miller, A Modern History of the Stomach: Gastric Illness, Medicine and British Society, 1800-1950 (London: Pickering & Chatto, 2011), p. 107. 24. See, for example, his comments on the two-dimensional nature of analysis (Pierre Mabille, La Construction de l’homme (Paris: Jean Flory, 1936), pp. 15, 17). 25. See, for example, André Breton’s anti-rationalist endorsement of psychoanalysis in the Manifesto of Surrealism (Breton, ‘Manifesto of Surrealism’, in Breton, Manifestoes of Surrealism, trans. Richard Seaver and Helen R. Lane (Ann Arbor: University of Michigan, [1924] 1972), pp. 9–10). Mabille’s work can also be positioned within the broader epistemological framework of the holistic spirit that developed in medicine as an integrationist response to the reductionist excesses of mechanistic physiology. On this topic see Charles E. Rosenberg, ‘Holism in Twentieth-Century Medicine’, in Christopher Lawrence and George Weisz (eds), Greater than the Parts: Holism in Biomedicine, 1920–1950 (Oxford: Oxford University Press, 1998), pp. 335–55. 26. Charles Fernet, Les Vertus hygiéniques (Paris: Masson, 1914), pp. 37–8. 27. Mabille, La Construction de l’homme, pp. 74–5. 28. Joan Tumblety, Remaking the Male Body: Masculinity and the Uses of Physical Culture in Interwar and Vichy France (Oxford: Oxford University Press, 2012), pp. 33–6. 29. C.-C. Pagès, ‘De la culture physique dans les maladies du rein’, Supplément de la culture physique (June–July 1933), p. 7; my emphasis. 30. Edmond Desbonnet, ‘Le XXe Siècle va devenir le siècle de la culture physique’, La Culture physique 451 (1927), p. 324. 31. André Vintre, ‘La Gymnastique des organes: la gymnastique du foie’, La Culture physique 451 (1927), p. 325. 32. Pierre Chevillet, ‘La Philosophie culturiste pratique et messieurs les culturistes’, La Culture physique 518 (1933), p. 175. 33. Schilder, L’Image du corps, pp. 109–10. 34. Mabille, La Construction de l’homme, p. 34. 35. Ibid., p. 35. 36. Ibid., pp. 32, 82. 37. Georges Bataille, ‘The Big Toe’, in Bataille, Visions of Excess: Selected Writings, 1927–1939, trans. Allan Stoekl (Minneapolis: University of Minnesota Press, [1929] 1985), p. 22. 38. On abjection, see Kristeva, Powers of Horror, pp. 1–2. 39. Sigmund Freud, ‘Beyond the Pleasure Principle’ (1920), in Freud, Beyond the Pleasure Principle and other Writings, trans. John Reddick (London: Penguin, 2003), pp. 45–6. 40. Ibid., p. 68. 41. Ibid., p. 74. 42. Ibid., p. 76. 43. Ibid., p. 78. 44. Ibid., p. 80. 45. Ibid., p. 81. 46. See ibid., p. 102. 47. Sigmund Freud, ‘The Ego and the Id’ (1923), in Freud, Beyond the Pleasure Principle, pp. 116–17. 48. Bataille, ‘The Big Toe’, p. 22; my emphasis.

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49. Georges Bataille, ‘Materialism’ (1929), in Robert Lebel and Isabelle Waldberg (eds), Encyclopaedia Acephalica: Comprising the Critical Dictionary and Related Texts (London: Atlas Press, 1995), p. 58. 50. Ibid. 51. Bataille, ‘The Big Toe’, p. 20. 52. See Dawn Ades, ‘Form’ in Dawn Ades and Simon Baker (eds), Undercover Surrealism: Georges Bataille and Documents (London: Hayward Gallery, 2006), pp. 152–5. 53. Georges Bataille, ‘Formless’ (1929), in Lebel and Waldberg, Encyclopaedia Acephalica, pp. 51–2. 54. Freud, ‘The Ego and the Id’, pp. 108 and 117. 55. Kristeva, Powers of Horror, p. 5. 56. See Evelyne Grossman’s discussion of Artaud’s La Pendue in Guillaume Fau (ed.), Antonin Artaud (Paris: Bibliothèque Nationale de France/Gallimard, 2006), p. 191. 57. Here Murray is also referring to the physical nature of the act of drawing, which literally inscribes the body’s gestural trace on to the paper (Ros Murray, Antonin Artaud: The Scum of the Soul (New York and Basingstoke: Palgrave Macmillan, 2014), p. 121). 58. Paul Macneill, ‘The Arts and Medicine: A Challenging Relationship’, Medical Humanities 37 (2011), p. 87. 59. Although the drawing for which Artaud’s explanatory text was originally written remains unidentified, Grossman convincingly argues that La Pendue is a likely candidate (see Grossman, in Fau, Antonin Artaud, p. 191). 60. Antonin Artaud, ‘Dépendre corps – L’amour unique’ in Artaud, Œuvres (Paris: Gallimard, [1945] 2004), p. 1035. 61. Lhermitte, L’Image de notre corps, pp. 229–30. 62. Ibid., p. 230. 63. Artaud spent much of the late 1930s and 1940s in various psychiatric institutions. Despite his poor health at this time, his writing and images nevertheless display a keen familiarity with the rhetorical practices of contemporary psychiatric medicine. Although it is unclear whether he would have been personally aware of Lhermitte’s work, he was none the less present within environments where psychophysiology would have been discussed and potentially used from a clinical standpoint. For information on Artaud’s psychiatric treatment, see Stephen Barber, Artaud: The Screaming Body (Creation Books, [1999] 2004), pp. 46–51. 64. Antonin Artaud, untitled statement (c. 1946), in Artaud, Œuvres, p. 1049. 65. Antonin Artaud, ‘La Mort et l’homme’ (1946), in Artaud, Œuvres, p. 1045. 66. Lhermitte, L’Image de notre corps, p. 230. 67. Ibid., p. 231. 68. Michel Leiris, ‘L’Homme et son intérieur’, Documents 5 (1930), pp. 264–6. 69. See also Jacques Derrida, ‘The Theatre of Cruelty and the Closure of Representation’, in Vision and Difference (Oxford: Routledge, [1967] 2001), p. 293. 70. Antonin Artaud, commentary for La Maladresse sexuelle de dieu (1946) in Artaud, Œuvres, pp. 1041, 1043. 71. Derrida suggests that here there is an equivalence between sexual and creative impotence. See Jacques Derrida, ‘To Unsense the Subjectile’, in Derrida and Thévenin (eds), The Secret Art of Antonin Artaud, p. 109. 72. Kristeva, Powers of Horror, p. 25. 73. Murray, Antonin Artaud, pp. 127–9.

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376 74. 75. 76. 77.

78. 79. 80. 81. 82. 83. 84. 85.

edward juler Paul Macneill, ‘The Arts and Medicine’, p. 87. Ibid. Allen, ‘The Body beyond the Anatomy Lab’, p. 204. Ludmilla Jordanova, ‘Medicine and the Arts: Overview’, in Victoria Bates, Alan Bleakley and Sam Goodman (eds), Medicine, Health and the Arts (London and New York: Routledge, 2014), p. 43. Ibid., p. 44. For an introduction to the relationship between art and anatomy, see Petherbridge, The Quick and the Dead. Allen, ‘The Body beyond the Anatomy Lab’, p. 206. Mabille, La Construction de l’homme, p. 12. See Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, in Medical Humanities 37 (2011), pp. 73–8. Crispin Sartwell quoted in Woods, ‘The Limits of Narrative’, p. 76. Murray, Antonin Artaud, p. 121. Derrida, ‘To Unsense the Subjectile’, p. 63. See also Suzannah Biernoff, ‘Picturing Pain’, in this volume, pp. 180–1.

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21 NARRATIVE AND CLINICAL NEUROSCIENCE: CAN PHENOMENOLOGICALLY INFORMED APPROACHES AND EMPIRICAL WORK CROSS-FERTILISE? Jonathan Cole and Shaun Gallagher

‘The study of disease, for the physician, demands the study of identity, the inner worlds that patients, under the spur of illness, create. But . . . these worlds cannot be comprehended wholly from the observation of behaviour, from the outside. In addition to the objective approach of the scientist, we must employ an intersubjective approach, to see the world with the eyes of the patient himself.’ Oliver Sacks1 ‘Science manipulates things and gives up living in them.’ Maurice Merleau-Ponty2

Introduction

S

cience (from the Latin, scientia) originally meant knowledge, so that ‘natural science’ meant knowledge of the natural world and of its laws. The term has since come to mean empirical, experimentally acquired knowledge and, as such, refers to some of the most powerful tools we have for understanding the world and indeed our own physiology. Scientific medicine has led to huge improvements in outcomes from a variety of conditions, from infectious diseases to cancer and heart disease. These advances have come, largely, from a mechanistic or reductionist approach to illness, which focuses on putting the body, understood as a physical mechanism or collection of physical mechanisms, right. Though these approaches are not inherently apersonal – good medicine combines science with a humane approach to explaining what is going on – there is another dimension to illness, or more specifically to the patient: the patient’s lived experience, which, we suggest, can also yield useful information. Not only can a phenomenological approach yield useful information, but also neglect of

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this perspective may, in some situations, mean medicine is not as effective in putting the body right. It is therefore critical that a phenomenological approach be integrated with the clinical science. In this chapter we explore how a focus on the patient’s own first-person experience, expressed in narrative format, can complement the clinical third-person approach, and in some cases lead to better understanding and point towards further empirical work itself. Such an approach seems better suited to chronic conditions, in which cure is often not possible and in which coming to terms with the condition becomes more important, given the long-term nature of the condition. Accordingly, it has been used very effectively in neurological impairment. Narrating the patient’s own experience also has the potential to de-pathologise such conditions, integrating such conditions into the patient’s life history, and moving them from being seen as abnormalities or deficits, to becoming accepted as different forms of living. One might even go further. Having a good neuroscientific understanding of various pathological conditions is absolutely essential, but having a good phenomenological understanding of the patient’s experience can help us understand more. The experiences of those who cannot move their faces reveal much about our own use of facial expression; the experience of losing movement and position sense (proprioception) is probably the best way to understand what that sense does in all of us; the ways in which those with spinal cord injury reflect on their embodiment and need to be vigilant to autonomic functions that we take for granted, and the reports of those with cerebral palsy, who have profound difficulties with agency and action, shed light on our own functioning. The deep exploration of the first-person experience of altered embodiment reveals much about our own embodied selves. A first-person approach – that is, an approach based on the subject’s reflective reports and narratives of his or her own experience – can be informed by the philosophical discipline of phenomenology, the study of first-person experience, which in broad terms is an approach or method rather than a school of thought. It can be divided very crudely into classical phenomenology, in which methods ascribed to its founder, Edmund Husserl, are used to probe the lived experience or consciousness of individuals; existential–hermeneutical phenomenology (in the work of Martin Heidegger, Jean-Paul Sartre and Maurice Merleau-Ponty), where the focus is on specific ways of being-in-the-world, characterised especially as embodied and intersubjective; and applied phenomenology, which involves attempts to apply the classical and existential principles of phenomenology in contexts that include psychiatry, medicine and, more recently, cognitive science. For our purposes we focus on the latter, and even in this regard will not try to do a large survey or review. Rather, we will try to show what phenomenology has to offer by focusing on several relevant concepts and several examples of chronic neurological impairment: severe sensory loss, spinal cord injury, cerebral palsy and the congenital absence of facial expression. Classical phenomenology employed a method that was primarily based on the subject’s reflection on his or her own experience. The use of phenomenology as a qualitative approach in science can also employ interview techniques that can help

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us pay close attention to the narrative reports of others concerning their own experience.3 We will refer to these as phenomenological narratives, by which we mean narratives that focus on the experiences of the narrator, generated in interactive contexts of conversation or more formal interviews. This is, in effect, what Sacks calls ‘an intersubjective approach’. The phenomenological interview involves a person trained in the interview method facilitating a reflective process in the patient, keeping her focused on the experiential aspects of her day-to-day life. This is intersubjective, not only in the obvious sense that it involves a dyadic interaction between interviewer and interviewee, but also in the sense that much of what the patient discovers and expresses in her narrative emerges only in the expression of it to the other person (the interviewer) who is attempting to understand. The reflection itself, in such cases, is not a private mental procedure, but an interactive accomplishment. In this regard, the phenomenological narratives that we are referencing are more formal than the pervasive narratives that characterise many of our intersubjective relations and that form the basis for our everyday understanding of others. In many clinical settings, of course, a formal phenomenological interview may not be possible for reasons having to do with time constraints, for example. In that case, a close reading of a patient’s more informal narrative can be informed by both phenomenological and hermeneutical expertise.

Useful Phenomenological Distinctions for the Science and Art of Medicine Phenomenological approaches to the body distinguish between two perspectives: the first concerns the lived body or body-as-subject (Leib) – that is, the perceiving and acting body; the second takes the body as an object of observation – the body-asobject (Körper) – that is, the body perceived in third-person observation. These are distinctions made by Husserl4 and Merleau-Ponty,5 and developed in more recent phenomenological contributions to embodied cognition.6, 7, 8 Basically, the body-asobject is the patient’s body as it is observed and examined by the physician; the body-as-subject is that same body as it is experienced by the patient. As Drew Leder9 makes clear, in most healthy everyday activities, the body-as-subject remains phenomenologically absent or ‘absently available’.10 That is, as we engage in our everyday tasks we do not monitor or focus our attention on our bodies. This changes, however, when we get hurt or sick. We change our conscious attitude towards the body – it becomes more present as an object to be considered. Arguably, much of medicine is concerned with a breakdown of the absence of the body, or of habitual (and in some sense thoughtless) agency. There is a further insight that accompanies this distinction between the objective body and the lived one relevant to medicine. When someone presents with carpal tunnel syndrome, for example, they sometimes say ‘I drop things in one hand.’ This is actually because of reduced sensation in the hand, which they may not be aware of consciously. But what happens next can be even more interesting. If they keep

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dropping things with that hand, they may use the other one more. They compensate. Very few people say, ‘I have to look at the hand that drops things more and concentrate when using it.’ They say, instead, ‘I started using my other hand.’ In this respect, the effect remains with the lived body – the compensatory adjustments are adjustments to action and the way that the person copes with the world.11 This works out well in terms of their ability to keep at their tasks, but such adjustments to their bodily skills and disinvestment from the affected part, without seeking advice, may delay treatment and lead to further complications. In some cases – for example, spinal cord injury – the person may not have any other option than to accept the changes to their body. After such a massive change, some people do really well as they explore what functions remain, while others are completely overwhelmed by their paralysis and insentience. A first-person, phenomenological approach to such cases is helpful, not just in terms of providing philosophical distinctions, but also to explore the differences in people’s responses to a given impairment, and to explore with particular patients the possibilities that work for them and with which they are comfortable. Faced with similar challenges, individuals’ responses can be very different. From the perspective of the physician, this is seen in the opening quotation from Oliver Sacks, which also motivates him to think about a particular paradox involved in disease: Defects, disorders, diseases . . . can play a paradoxical role, by bringing out latent powers, development, evolutions, forms of life, that might never be seen, or even imaginable, in their absence . . . the paradox of disease [is] its ‘creative’ potential.12 Unfortunately, however, creativity is not a given, since unproductive and destructive responses can also be, and often are, the result of disease. In the remainder of this chapter we discuss a number of examples where an extended narrative and the phenomenological approach have deepened a scientific and clinical understanding. The sharpening of clinical reasoning13 might reasonably be considered a sufficient motive for using such strategies, but we will also suggest that it is possible for such strategies to lead to scientific advances. The examples we review here involve motor imagery related to motor control, facial recognition, emotional experience, body ownership and social interaction, and they include cases of people with deafferentation syndrome, Möbius syndrome, spinal cord injury and cerebral palsy.

Thinking Through Gestures In terms of our own work, perhaps the best place to start is in an analysis of gesture in Ian Waterman, who, since the age of nineteen, now over forty years ago, has lived without the senses of touch or movement, or of position sense from below the neck, known as deafferentation syndrome. His case has been extensively written about from a variety of differing perspectives, from empirical neuroscience to narrative and phenomenologically informed approaches.14 One of us, Jonathan Cole (JC), was introduced to Ian in the mid-1980s, in a clinical/research setting, twelve years or so after

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he had lost the large myelinated nerve cells that underpin sensations of touch and proprioception. The other nerves, subserving pain and temperature perception, were intact, as were his movement or motor nerves, but without peripheral feedback of position and movement in his body and limbs Ian had been, initially, totally unable to move. Yet now Ian was walking, working and living independently, having gone through his own long rehabilitation, as he learnt to move by thinking about his body (or by strategising about how to perform a movement) and to guide his movements using visual supervision. The extent of his recovery was amazing and remains unprecedented amongst those few people with this condition. Ian had gone through over two years of intensive recovery in hospital, learning to move by thinking about his movement – using cognitive effort – so he could feed himself, dress and walk. In doing so, he rejoined society, a hugely important thing for his self-esteem, especially in the 1970s when attitudes to disability were less enlightened. Soon after he had learnt to become independent, Ian realised that there was one motor skill he had not relearnt: namely, gesture. So, systematically, he set about learning it, specifically the gesticulations associated with language, to appear normal to others. He was so secretive about this that he hardly mentioned it to JC when they collaborated in writing his biography.15 They did not discuss Ian’s gesture, except that Ian did say: sometimes I use [gesture], but only when sitting down, which allows me to do it without fear of falling, and I always have to think about it. I have to decide consciously to use my hands to move with and emphasise my speech. That is, Ian, in some way, needed to take an attitude towards his body as a conscious object and think about what he needed to do, as though from a third-person perspective. This seemingly was the same for instrumental movement, as when he picked up a glass to drink, as it was for gesture. JC had written: Ian is always caught in a trap. Isn’t thinking about movement the same as [theatrical] acting? And doesn’t acting suggest artifice and untruthfulness? Ian has . . . regained some appearance of spontaneity, to communicate and conceal his actions, and hence his thoughts, by body language. [This] reacquisition depends on concealment that these gestures are in his case heartfelt but consciously made.16 There is a use of narrative, outside of the laboratory, and outside of the clinic, that plays an important role in academic, scientific and medical contexts. Physicians may talk informally about patients; scientists may talk informally about experiments; and phenomenologists may talk informally about ideas; this informality is informed by each person’s discipline, but also by a more naïve curiosity. In this case, a phenomenologist, Shaun Gallagher (SG), familiar with Ian, after discussing Ian’s gestures with JC, met David McNeill, a psychologist in Chicago, who is an expert in gesture. SG told McNeill Ian’s story and about his ability to use gestures. We all spent some time together, with Ian, in Chicago studying his gesture, and this has resulted in a better understanding, not only of Ian’s gestures, but of gesture per se.17, 18, 19

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McNeill’s method was to show Ian a cartoon video that, when narrated, elicited rich gestural movements (a cartoon of Sylvester the cat and Tweetie-Pie). Ian was then asked to narrate what happened in the cartoon whilst he was being filmed so that his gesture could be analysed offline. Such a video allowed comparison across subjects of a compressed expressive story. Narration, in this case about the cartoon rather than about Ian’s experiences, was part of the methodology. McNeill analyses gestures in terms of the timing and of the handedness, shape of hand, palm and finger orientation, and motion (shape, direction). He also considers gesture space, normally the shape of a shallow disk in front of the speaker.20 When giving a vocal narrative description of someone else’s action, the narrator can adopt either his own perspective in gesture space or that of a character being described: the observer or character viewpoint, respectively. The analysis of gesture in all of these aspects is done in relation to ongoing speech, in terms of words, prosody and so on, and frame by frame, millisecond by millisecond. In addition, McNeill also had Ian give a narrative of the cartoon with gesture when he could not see his arms and hands, which we had hidden beneath a screen as he maintained a sitting position. McNeill’s thesis is that the unfolding of thought and language takes place coupled together in – and by – the unfolding of gesture. Language and gesture, he suggests, co-evolved and are mutually dependent. He goes further: ‘Gesture shows how important it is for language to be embodied, to unfurl not only in speech acts, but in communicative acts within the body which complement the words and prosody of speech.’ His other suggestion is no less challenging. He suggests that gesture, the actual motion of the gesture itself, is a dimension of meaning . . . gesture is the very image; not an ‘expression’ or ‘representation’ of it, but is it. Gestures and speech then are not only ‘messages’ or communications, but are ways of cognitively existing, of cognitively being, at the moment of speaking . . .21 The importance of studying Ian for this thesis becomes clearer. McNeill suggests there is a thought–language–gesture system, with the parts coexisting and co-dependent, which has evolved within the brain, in a region called Broca’s area and adjacent to it, a mirror neuron area. Gesture, after all, has meaning for others, as for us. If McNeill were able to find someone in whom gesture is preserved when other types of movement, instrumental (dressing, writing, feeding and so on) and locomotion, were degraded or difficult, then this would offer some support for his theory. Minute observation of Ian’s gesture when he could see his hands revealed that his gestures were smaller than those of other human control subjects making similar gestures, for reasons of economy and safety (expansive hand movements can throw Ian off balance, and he has to use more cognitive effort to control for balance). They were also fewer in number and tended to be performed one by one. The only clue that control was unusual was that he tended to look down at his hands during some phases of gesture. But in terms of timing, shape, position, character and observer viewpoints, they were indistinguishable from normal.22 Under a blind that allowed Ian to see the room but not his hands, initially he did not gesture during his narrative, scared he

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might fall off the chair. But as he relaxed, gestures appeared, with shape and timing preserved, although their accuracy in external positions in space was degraded. With vision he relayed the cartoon using both observer and character viewpoints, but without vision, gestures from the character viewpoint (which are closer in nature to instrumental actions) were lost. It was clear, though, that Ian, even without vision, could modulate the speed of gestures and speech in tandem, slowing them down and speeding them up together. Timing and shape were preserved, even when he did not know exactly where his arms and hands were. In contrast, as expected, without vision, he could not manage the instrumental actions McNeill had devised (putting the cap on a thermos, pulling a scarf through a hoop like a magician). McNeill’s analysis suggests that, in timing and in relation to spoken language, Ian’s gestures are normal, and this supports his theory of gesture being part of a common gesture and language system within the brain, related to thought and communication, and separate from other areas having to do with movements of walking or, say, dressing. Further analysis also showed an interesting dimension to gesture. One additional reason for considering gesture to be different from other movements is the way in which Ian can use it in long trains of movement, whereas other movements are broken into short episodes interrupted by thought and analysis of the next short train. In contrast, gesture continues as he speaks as though naturally. Ian, reporting from the phenomenological first-person stance, agrees that he does not have to think about gesture as long as he is safe and the gesture space is free. On occasion, though, he also uses more complex gestures, which he does have to think about. He calls his free natural gestures ‘throwaways’ and the inserted, consciously produced ones ‘constructeds’. Quaeghebeur et al. make it clear how phenomenology can be productive in this context, for they apply phenomenological philosophy to understand the distinction between Ian’s throwaways and constructeds better: Recall that his constructeds were fewer in number, were isolated, performed oneby-one and in a self-conscious manner. On the other hand, he produces his throwaways with ease . . . . In a sense, by making this distinction, IW summarizes the whole point about the impossibility for third-person empirical-scientific approaches to fully capture the nature of gesture. When IW is unaware of his perfectly synchronized gesturing (when he is producing what he calls ‘throwaways’), he is immersed in the participatory point of view and he engages his whole body-as-subject to convey his intentions. His body enacts his cognitive being at that time. However, when he is constructing his constructeds, he takes an observational, detached and external stance towards his own performance. He consciously divides up his utterances and hand movements by objectifying their features and then tries to attain synchrony. He takes a meta-cognitive stance (trying to control his hand movements), which clashes with and disrupts what he is trying to express with his hands (whatever the conversation is about). Co-expressiveness of gesture and speech breaks down —and so does synchrony, and to some degree so does the sense-making process.23

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In other words, Ian either could be immersed in the conversation and unaware to an extent of the details of his gesture (in this regard, his body is in the typical body-asabsent mode) or he could be aware of making gesture and so unable to be immersed in the usual flow. Note, however, that this phenomenological clarification, and a better understanding of gesture, come about from a distinction that Ian himself made in his phenomenological narrative about his own experience. At the same time, it is not that Ian knew this about his gesture prior to the experiments. It was only the discussions with others about his gestures, during this particular study, that allowed him to make the distinction.

Motor Imagery and Deafferentation When Ian relates how he moves, he always stresses the mental effort involved; for him to think about movement is tiring. He also rehearses the movements in his head since imagining doing something makes it easier. In addition, given the complexity of some movements – walking, for instance – and their smooth and relatively fast forward progression in Ian’s performance, it is clear that for some of his movements he is not using online visual feedback of movement. Rather, he constructs predictive motor programmes, which he runs and assumes will work, with visual supervision of success rather than visual feedback of accuracy, the latter being too slow to correct inaccurate movement. Whether unwittingly or not, he discusses this in almost poetic terms: When a bird learns to fly it leaves the nest and goes to sit on a branch, and its expectation is that the branch won’t break, it trusts the branch. To become mobile and live independently I have learned to manage a range of movements, and I trust my ability to choreograph them in a way that I want. That’s the payoff for all the hours, weeks and months of training, an implicit self-belief; that my branch won’t break.24 The structure of his branch is that willing always leads to doing. The problem was in showing that he predicts movements in this way. In this respect, the phenomenology again helped to inform the empirical science and the science verifies his phenomenological insight. Some years ago when in Quebec, Chantal Bard’s group had used a mirror drawing task with GL, a subject with the same condition as Ian, though she remained in a wheelchair and was quite shaky and slower in her movements. They had devised a simple and yet profound experiment: to trace a simple star of David on a desk with a finger.25 The measurements were simply of how long it took and whether she improved each time; the trick was that subjects only had mirror-reversed feedback. Control subjects get stuck at the points of the star, and are jittery as they receive conflicting information from vision and proprioception about where to go. In contrast, GL was fast the very first time, without jitters at the corners; she was better than the rest of us. Their conclusions were reasonable enough: that GL could do mirror drawing because she did not have any mismatch between where she saw herself going and where she felt herself going through proprioception, since she had no proprioception.

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Some years later JC and Chris Miall reproduced this with Ian in Birmingham, using a more sophisticated virtual mirror and a graphics tablet, which allowed us to measure the accuracy and timing as subjects went round a series of patterns.26 Ian got stuck at the corners, like control subjects. Our conclusion was that Ian, like controls, does not have a mismatch between seeing where the arm appears to be moving and feeling where the arm is going based on proprioception (since he has no proprioception), but from seeing it move and from an internally generated motor programme of where the hand is planned to go next. When doing the task, our own phenomenological introspective feeling supports this. The problem at the points of the star is felt to be conflictive between where you see the pointer going and where you will it to go, rather than between where it is seen and where it is felt. This showed that Ian uses these forward motor programmes, something he had always said but which is quite difficult to show experimentally. This also revealed a crucial difference in the way Ian and GL moved. GL tends to use online real-time visual feedback of movements more, whereas Ian makes these plans for movement, which allows him to move more quickly and with more complexity, control and prediction. In this respect, Ian takes more risks with his movements and he trusts himself to move without complete supervision. One further experiment probed this. At University College London, with Richard Frakowiak, Chris Frith, Daniel Wolpert and research fellow Bal Athwal, Ian agreed to a brain imaging experiment (using positive emission tomography [PET], a form of brain scanning).27 He lay in the scanner and had to touch each finger to thumb sequentially with feedback from a video screen in front of him. Then they were able compare brain activations in four conditions: when Ian moved and saw his finger move, when he moved but saw a still hand, when he had a still hand and saw that hand still, and lastly when his hand was still but he saw his recorded hand moving. They then compared Ian’s brain activations with those of six controls (JC was one). In the most interesting condition, Ian moving without being able to see his hand move, he activated an area of the right orbito-frontal cortex of the brain more than controls, reflecting his need for top-down control or concentration, even for a simple movement. He alone also activated an area of occipito-parietal cortex, which is an area of visuo-motor integration. We concluded that to move without visual feedback he has to concentrate on moving, and what he thinks when doing this – what precisely he is conscious of – is visualising his hand moving; to put it another way, he wills movement of the hand by visualising the hand moving. In this case, the brain imaging data supported his phenomenological account; he was closing the open control loop for movement by entraining his intention by visualisation.

Facial Expression Recognition in Möbius Syndrome Though the neural activation results were obviously new, Ian’s phenomenological account of his motor skills and of gesture turned out to be very similar to our interpretations of the results from empirical work. He has two ‘advantages’ in this regard: firstly, he has to think about movement, and secondly, he has had the condition of

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deafferentation syndrome since the age of nineteen, so he has some knowledge of his state before that age. In contrast, those who have congenital conditions know no other state and so may find it more difficult to compare their perceptions with those who are unaffected. Möbius syndrome is a rare non-progressive congenital condition, in which subjects have complete (or near-complete) bilateral facial paralysis and impaired bilateral movement of the eyes.28, 29 People with Möbius syndrome are unable to produce facial movements or to shut their eyes or mouths. They do not volunteer, however, that they have problems in recognising the facial expressions of emotions in others that they themselves cannot make, although some of their narratives suggest that they feel out of sync with, and misunderstood by, others. This has resonance because some researchers have investigated individuals with Möbius syndrome to test embodied simulation accounts of facial expression recognition, which suggest that perceivers recognise the emotions of others by simulating the emotional experience within themselves.30 One particular version of this theory, the reverse simulation model, suggests that perceivers recognise facial expressions by initially mimicking the observed expression. It is thought that this act generates the corresponding emotional experience within the perceiver, permitting recognition of the observed emotional state.31, 32 The model is supported by evidence that perceivers spontaneously and covertly mimic facial expressions when viewing facial stimuli33, 34 and by the facial feedback hypothesis, which proposes that proprioceptive feedback from facial expressions is either necessary or sufficient to affect the experience of emotion.35, 36, 37 Because individuals with Möbius syndrome suffer from facial paralysis and hence cannot mimic facial expressions, investigation of their ability to recognise facial expressions is an innovative test of this theory. Giannini et al.38 examined one individual with Möbius syndrome who was unable to judge changes in a card player’s facial expression to estimate which of three jackpots he was playing for, unlike control participants. In contrast, Bogart and Matsumoto39 carried out an online assessment of facial expression recognition in thirty-seven Möbius participants, using an internet-based study where participants completed a facial expression recognition test. They found that Möbius individuals did not differ from the control group, apparently evidence against the hypothesis that reverse simulation with facial mimicry is necessary for facial expression recognition. A more in-depth assessment of facial processing abilities was reported by Calder et al., albeit with a smaller sample of three individuals with Möbius syndrome.40 In a basic emotional expression labelling task, none of the participants was impaired, but with more demanding tasks, including recognition of ambiguous emotional expressions, one participant was impaired, one was borderline impaired and the other was unimpaired. The authors suggested that the impairments observed in processing facial expression may, in fact, be secondary consequences of Möbius syndrome, resulting from eye movement abnormalities that create generalised problems in looking at faces. Indeed, the nature of Möbius syndrome means that individuals will often have less expertise and experience with faces than neurologically intact individuals

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of a comparable age. If Calder et al.’s hypothesis is correct, one would expect a more generalised facial processing deficit to be observed in these individuals, affecting not only the processing of facial expression, but also facial identification processes. In a more recent study, Bate et al.41 showed that five of their six participants had not only mild impairments in the recognition of facial expressions but also difficulties in facial identity recognition, suggesting they did indeed have a more generalised facial processing impairment rather than one restricted to emotional expressions. In addition, they showed that in a facial expression imagery task, only one participant displayed impairment. In agreement with Calder et al.’s early study, they concluded that the processing of facial emotion does not depend on a facial feedback hypothesis or reverse simulation model. Rather, the deficits observed could reflect perceptual problems related to the problems with eye movement and experience, with potential for amelioration. In addition to this behavioural research, phenomenological interviews, asking the person with Möbius syndrome about their experience, indicate that they can have early emotional experiential problems but that they also find compensatory strategies, and so can experience and express a range of emotions comparable to neurotypical individuals.42, 43, 44 Lacking facial expressions, people may engage in more wholebodied expressions. One person with the condition commented, ‘I do not think I had emotion as a child but now I have it. How did I get it? It was in Spain. . . . The body language I had learnt and used at university could be exaggerated in Spain, using the whole body to express one’s feelings.’45 Another individual with Möbius syndrome states, ‘The tone, the volume, the timbre of the voice, and bodily language, I use to supplement in ways that my face can’t provide . . . I have a whole repertoire of laughs that I use to respond to different situations.’46 Here the idea of second-person embodied interaction, rather than first-person mimicking or simulation, comes to the fore. Individuals with Möbius syndrome report that they can elicit interest and attention from conversational partners when they make an effort to accompany their speech acts with gestures or other bodily movements that involve maintaining eye contact or posture.47 This itself depends on a sensitivity towards a variety of subtle emotions normally integrated into social interactions. It is not clear, however, that the interaction pattern is best described in terms of mimicking or simulation. Individuals with Möbius syndrome often have to make bids to keep the other’s attention. Face-to-face interactions go both ways and it has been suggested that some of the problems that individuals with Möbius syndrome have with social interaction are actually the problems that others have interacting with them. As Krueger and Michael put it, ‘many people are ill-equipped to engage with facial difference, finding it off-putting or frightening.’48 No matter how these theoretical matters turn out, this research provides significant insight not only into the experience of individuals with Möbius syndrome and points towards interventions to improve their lives, but also, more generally, into questions about the dynamics of social interaction. The phenomenologically informed insights from individuals with Möbius syndrome have guided clinical studies and, indeed, have

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been useful in the interpretation of empirical results. In addition, research on those with Möbius has led from more conventional third-person data acquisition to a recognition that further understanding will come from gaining insight concerning the ways in which people in specific situations converse and interact. In this case, the phenomenological, first-person perspective gives some important insight into the apparent mismatch with regard to facial expression, showing the problem to be not one of emotion recognition, which can be developed in other ways by those with MS, but rather the way that others respond to those with Möbius syndrome. The first-person perspective thus provides more nuance to something that empirical studies and hypotheses tend to erase.

Agency and Action in Cerebral Palsy Now we turn to consider two people with cerebral palsy (CP) (see Peckitt et al.49). One, Michey, has hemiplegia: semi-paralysis down the left side. With poor control of volitional movement all he can do reliably is ‘grab and release’ with his left hand, and walk with the help of a walking stick. The second, Minae, a woman with athetoid CP that entails slow writhing movements, has trouble holding herself in an upright and steady position to sit. It takes work and concentration for her to speak. Their experiences enable greater insight into the condition, and also open avenues for research on the relations between action and perception, and of course on improved therapy for those with CP. As soon as [Michey] leaves the house he has to alter his position and posture, making tiny alterations every second. Every movement of his foot, swing of the stick and grip on the stick handle has to be carefully co-ordinated. Without fluidity in his walking, he needs constant planning of every move. [His phenomenological report:] He is always aware of his body as an object to be controlled, not really ‘part of me’, and yet – and at the same time – it is certainly ‘my body’ which he needs to constantly reorganize. [Moreover] Michey’s surrounding environment appears as something hostile, and something he is part of, but certainly not in; it is an object which one must continually manipulate, as opposed to being a friendly place, somewhere where Michey feels at ease or at even at home. Other people appear as obstacles to be avoided.50 Michey has to adjust his body constantly, even though he never knows which adjustments will have to be made exactly, or if they will work. How his intention and agency superimpose on the ataxia of CP is uncertain. Though his left side is affected, his right is normal, making his experience of the world, and of his body, fractured and binary; one side is obedient without thought, the other side is chaotic and unpredictable despite attempts to control his movements. Michey’s agency is disrupted and split, his relationship to his left side being entirely different in character to that with his right. When Michey was much younger this need to negotiate with his left and right side independently of each other created a sense of physical

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bi-polarity, as if he had two bodies to deal with, and two selves, each in charge of one side of his body. Communication is a big problem for Minae. She has so many problems moving her mouth to form words correctly and has developed her own way of communicating: When I give a talk at a workshop or a conference, I always feel uneasy because I not only feel nervous like everyone else, but also I know I am going to be frustrated at myself. Of course, it might be because English is a second language to me (my first language is Japanese), but it is not only that. When I speak, I have to think of which words I can pronounce easily. Even if I want to say more complex terms and long sentences, I cannot. I always need to avoid those words I cannot pronounce and I need to think how to make my speech very short, and shorter than my thoughts and ideas. My thoughts and arguments are thus constrained not by knowledge or my creativity but by the link between me and the vocalisation part of my brain.51 Here Minae describes how the physical aspects of her speech acts constrain her expression and indeed her thoughts, as Michey described how his perception altered between sides because of his ability to move. People with CP, like those with Möbius, are born with their condition and it takes time for them to learn that they and their movements are dramatically different from others (personal communication with Kristian Martiny, Helene Elsass Center). Your first inclination is not to compare yourself with anyone else – you just do what you do and assume everyone has the same way of being-in-the-world. Even if later you come to realise that you cannot do everything other people can do, it is not clear that this is a pervasive or dramatic difference. Only later do you come to realise that you may be different, and even then it is difficult to see the significance of that. In this case, given the subtle problems with facial expression recognition people with Möbius have, and with no knowledge of other states, empirical science has pointed towards therapeutic interventions. Children with Möbius, and those with CP, need to be shown the best ways to use what they have, and also to interact and explain their visible differences to others.

A Voyage of Discovery: Spinal Cord Injury What is not always realised is how hard it is to learn afresh to do something as an adult; there are few motor skills, in fact, that we do learn as adults. We learn to drive, for instance, which can be difficult and time-consuming. For someone with spinal cord injury (SCI), learning to self-catheterise their own bladder can be a long job. One person said, It can be months till you settle down to do it regularly and safely. When I first started doing it I got a urinary tract infection and my nurse gave me a real bollocking. I was trying the best I could, but she thought my technique was shit.52

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He had been shown how to do it but was just not physically capable of doing all the new movements required in the right order and timing, while balanced on a chair, with weak hands and shoulders, and a weakness of the neck controlling his head and with the problems of seeing what he was doing. Slowly, after several months, doing it several times a day, he worked out a way. I now open the catheter, open a bit of sticky, split the packet, place it on the wall or loo, get a piece of tube, put that in my mouth while I get the catheter, shuffle forward on the chair, undo trousers and get everything out, connect, pass catheter and place over the loo. I do not know whether it [the cognitive difficulty involved] is part of spinal cord injury but it has taken me 6 months to do this simply. I would forget the order to do things. I would withdraw the catheter and urine would still bubble out. Now I rarely wash my hand. It is such a simple technique – and I do not have infections. Bowel care is the same and is a ‘voyage of discovery.’ Despite it being explained and my doing it many times, it still took me months. All these things take time. This is something that even the senior nurses don’t appreciate, especially when they want you out of the loo. You can take an hour to do it and then clean up with a shower.53 The importance of understanding the new ways of living with SCI and the difficulties in learning new tasks shown here are generalisable to other situations and other chronic conditions, like stroke, chronic pain or arthritis. Paying more attention to the patient’s first-person account might have led to support and understanding – rather than the ‘bollocking’ from his nurse. Many people with SCI also live with a form of deafferentation pain; they may not feel their bodies and limbs, but they still feel pain in them in a manner akin to phantom limb pain. One man describes this pain as follows: My physical pain is in the hands and down the legs and in the feet. The pain does not come on; it is there, the whole time, 24 hours per day every day, every day of the year. Most of the time I can override it, but I still know it is there. It starts in the bottom and in the legs. It is hot, on the inside, like needles trying to get out. The feet feel as though someone has a bicycle pump on them, they feel massive as though they are about to explode and then you look down on them and they are normal size, which is odd. They feel at least twice that size. With my buttocks I am sure it is really hot and ulcerated and yet they are not. At the same time I get the feeling that my legs are ice cold and I touch them and they are not, just numb and yet painful. Nothing makes it worse or better.54 Extraordinarily, though, this patient’s relation with his pain is not straightforward. ‘When it’s angry it gets me so down,’ but at other times ‘it is almost comfortable, almost my friend. I know it’s there, it puts me in touch with my body.’ Pain connects him with his numb, paralysed body. His narrative reveals the overwhelming desire for embodiment, even when through pain alone, while the insights of others with the

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condition are important and essential for appropriate assistance, whether medical or social. The phenomenological report here generates an unexpected insight – that pain can be a comfort. In some contexts, this may be an important point, valuable not only from the perspective of clinician–patient communication, but also in relation to more general intersubjective (patient–family, patient–patient) modes of agency and support.

Conclusion Phenomenology has been working hand in hand with empirical cognitive neuroscience for some time now.55, 56, 57 The work with Ian on motor imagery is a nice example of this. Here we want to emphasise that phenomenology has a place in clinical settings as well; insights from phenomenological narratives of neurological impairment are not subservient to empirical accounts but can stand beside them as equals and contribute to intersubjective understanding that benefits therapeutic results (something that has been emphasised by Havi Carel’s work on the phenomenology of illness). Not only this, however; they can also be generalisable and can reveal much, not only about impairment but also about ‘normal’ function. Thus, in the case of studying gestures in Ian, the intersubjective approach offers insight into both Ian’s gestures and gesture per se. The Möbius narratives not only provide significant insight into the experience of individuals with the condition, but they also allow us to explore specific empirical hypotheses relevant to the role of facial expression in the dynamics of social interaction. The experiences of those with CP begin to address relationships between agency, intention and perception of the world and others; the experiences of those with SCI inform both medical care and ideas about motor learning, and also the relations between our own sense of self and the body. In chronic neurological impairments, not to use the insights gained from phenomenological narratives alongside empirical and clinical work would be to impoverish not only those areas of practice but also our understanding of how we function and what it is to be human. And by exploring the experiences of those ordinary people placed in extraordinary situations by impairment, we may begin to see the people themselves, and their rich responses to change, in new ways.

Further Reading Jonathan Cole, Still Lives: Narratives of Spinal Cord Injury (Cambridge, MA, and London: MIT Press, 2004). Shaun Gallagher, How the Body Shapes the Mind (Oxford: Oxford University Press, 2005). Maurice Merleau-Ponty, Phenomenology of Perception (London: Routledge & Kegan Paul, 1962). Oliver Sacks, An Anthropologist on Mars (London: Picador, 1995). Francisco J. Varela, Evan Thompson and Eleanor Rosch, The Embodied Mind: Cognitive Science and Human Experience (Cambridge, MA: MIT Press, 1991).

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Notes 1. Oliver Sacks, An Anthropologist on Mars (London: Picador, 1995), p. xiv. 2. Maurice Merleau-Ponty, ‘Eye and Mind’, in The Primacy of Perception (Chicago: Northwestern University Press, 1964), p. 159. 3. Claire Petitmengin, ‘Describing one’s Subjective Experience in the Second Person: An Interview Method for the Science of Consciousness’, Phenomenology and the Cognitive Sciences 5 (2006), pp. 229–69. 4. Edmund Husserl, Ideas Pertaining to a Pure Phenomenology and to a Phenomenological Philosophy – Second Book: Studies in the Phenomenology of Constitution, trans. Richard Rojcewicz and André Schuwer (Dordrecht: Kluwer, 1989). 5. Maurice Merleau-Ponty, Phenomenology of Perception (London: Routledge & Kegan Paul, 1962). 6. Shaun Gallagher, How the Body Shapes the Mind (Oxford: Oxford University Press, 2005). 7. Dorothée Legrand, Thor Grünbaum and Joel Krueger, ‘Dimensions of Bodily Subjectivity’, Phenomenology and the Cognitive Sciences 8.3 (2009), pp. 279–83. 8. Francisco J. Varela, Evan Thompson and Eleanor Rosch, The Embodied Mind: Cognitive Science and Human Experience (Cambridge, MA: MIT Press, 1991). 9. Drew Leder, The Absent Body (Chicago: University of Chicago Press, 1990). 10. Shaun Gallagher, ‘Lived Body and Environment’, Research in Phenomenology 16 (1986), pp. 139–70. 11. Shaun Gallagher and Jonathan Cole, ‘Body Schema and Body Image in a Deafferented Subject’, Journal of Mind and Behavior 16 (1995), pp. 369–90. This, of course, depends on the particulars of the case. In the case of Ian Waterman, discussed in this chapter, he does need to monitor his body (the body-as-object) in order to act. In other terms found in the phenomenological and neurological traditions, Ian employs an enhanced body image due to a problem with the kind of automatic motor control associated with a body schema. 12. Sacks, An Anthropologist on Mars, p. xii. 13. Gunn Kristin Øberg, Britt Normann and Shaun Gallagher, ‘Embodied Clinical Reasoning in Neurological Physical Therapy’, Physical Therapy: Theory and Practice 31.4 (2015), pp. 244–52. 14. Jonathan Cole, Pride and a Daily Marathon (London: Duckworth, 1991; Cambridge, MA, and London: MIT Press, 1995). 15. Ibid. 16. Ibid., p. 148. 17. Gallagher, How the Body Shapes the Mind. 18. Liesbet Quaeghebeur, Susan Duncan, Shaun Gallagher, Jonathan Cole and David McNeill, ‘Aproprioception and Gesture’, in Cornelia Müller, Alan Cienki, Ellen Fricke, Silva H. Ladewig and David McNeill (eds), Handbook on Body – Language – Communication (De Gruyter–Mouton, 2014), pp. 2048–61. 19. Jonathan Cole, Losing Touch: A Man Without his Body (Oxford: Oxford University Press, 2016). 20. David McNeill, Hand and Mind: What Gestures Reveal about Thought (Chicago: University of Chicago Press, 1992), pp. 75–104. 21. David McNeill, Gesture and Thought (Chicago: University of Chicago Press, 2005), pp. 99–101.

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narrative and clinical neuroscience 22. 23. 24. 25.

26.

27. 28. 29. 30. 31. 32. 33. 34. 35. 36. 37. 38.

39.

40.

41. 42. 43. 44.

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Ibid., p. 234ff. Quaeghebeur et al., ‘Aproprioception and Gesture’. Cole, Pride and a Daily Marathon. Yves Lajoie, Jacques Paillard, Normand Teasdale, Chantal Bard, Michelle Fleury and Yves Lamarre, ‘Mirror Drawing in a Deafferented Patient and Normal Subjects; Visuoproprioceptive Conflict’, Neurology 2.5 (1992), pp. 1104–6. R. Chris Miall and Jonathan D. Cole, ‘Evidence for Stronger Visuo-motor than Visuoproprioceptive Conflict during Mirror Drawing Performed by a Deafferented Subject and Control Subjects’, Experimental Brain Research 176.3 (2007), pp. 432–9. Bal Athwal, Jonathan Cole, Richard S. J. Frakowiak, Chris Frith and Daniel Wolpert, unpublished. Wolfgang Briegel, ‘Neuropsychiatric Findings of Möbius Sequence: A Review’, Clinical Genetics 70 (2006), pp. 91–7. Paul Julius Möbius, ‘Ober angeborenen doppelseitige Abducens-Facialis-Lahmung’, Munchener medizinische Wochenschrift 35 (1888), pp. 91–4. Alvin I. Goldman and Chandra S. Sripada, ‘Simulationist Models of Face-based Emotion Recognition’, Cognition 94 (2005), pp. 193–213. Alvin Goldman, Simulating Minds: The Philosophy, Psychology and Neuroscience of Mindreading (Oxford: Oxford University Press, 2006). Theodor Lipps, ‘Das Wissen von fremden Ichen’, in Lipps (ed.), Psychologische Untersuchungen Band 1 (Leipzig: Engelmann, 1907), pp. 694–722. Ulf Dimberg, Monika Thunberg and Kurt Elmehed, ‘Unconscious Facial Reactions to Emotional Facial Expressions’, Psychological Science 11 (2000), pp. 86–9. Ulf Dimberg and Monika Thunberg, ‘Rapid Facial Reactions to Emotion Facial Expressions’, Scandinavian Journal of Psychology 39 (1998), pp. 39–46. Carroll E. Izard, The Face of Emotion (New York: Appleton–Century–Crofts, 1971). Silvan S. Tomkins, Affect, Imagery, Consciousness: Vol. 1. The Positive Affects (Oxford: Springer, 1962). Silvan S. Tomkins, Affect, Imagery, Consciousness: Vol. 2. The Negative Affects (New York: Tavistock/Routledge, 1963). A. James Giannini, Donald Tamulonis, Matthew C. Giannini, Robert H. Loiselle and George Spirtos, ‘Defective Response to Social Cues in Möbius Syndrome’, Journal of Nervous and Mental Disease 172 (1984), pp. 174–5. Kathleen Rives Bogart and David Matsumoto, ‘Facial Mimicry is not Necessary to Recognize Emotion: Facial Expression Recognition by People with Moebius Syndrome’, Social Neuroscience 5.2 (2010), pp. 241–51. Andrew J. Calder, Jill Keane, Jonathan Cole, Ruth Campbell and Andrew W. Young, ‘Facial Expression Recognition by People with Möbius Syndrome’, Cognitive Neuropsychology 17 (2000), pp. 73–87. Sarah Bate, Sarah J. Cook, Joseph Mole and Jonathan Cole, ‘First Report of Generalised Face Processing Difficulties in Möbius Sequence’, PLoS One 8.4 (2013), e62656. Jonathan Cole, About Face (Cambridge, MA, and London: MIT Press, 1998). Jonathan Cole, ‘Empathy Needs a Face’, Journal of Consciousness Studies 8 (2001), pp. 51–68. Jonathan Cole and Henrietta Spalding, The Invisible Smile (Oxford: Oxford University Press, 2009).

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45. Ibid., p. 154. 46. Kathleen R. Rives Bogart, Linda Tickle-Degnen and Nalini Ambady, ‘Compensatory Expressive Behavior for Facial Paralysis: Adaptation to Congenital or Acquired Disability’, Rehabilitation Psychology 57 (2012), pp. 43–51. 47. Cole, ‘Empathy Needs a Face’. 48. Joel Krueger and John Michael, ‘Gestural Coupling and Social Cognition: Möbius Syndrome as a Case Study’, Frontiers in Human Neuroscience 6 (2012). 49. Michael G. Peckitt, Minae Inahara and Jonathan Cole, ‘Between Two Worlds: A Phenomenological Critique of the Medical and Social Models of Disability’, in Kohji Ishihara and Minae Inahara (eds), Philosophy of Disability & Coexistence: Body, Narrative, and Community (UTCP-Uehiro Booklet 2) (Japan: UTCP, 2013). 50. Ibid. 51. Ibid. 52. Jonathan Cole, Still Lives: Narratives of Spinal Cord Injury (Cambridge, MA, and London: MIT Press, 2004), p. 86. 53. Ibid., pp. 86–7. 54. Ibid., pp. 89–90. 55. Varela et al., The Embodied Mind. 56. Francisco J. Varela, ‘Neurophenomenology: A Methodological Remedy for the Hard Problem’, Journal of Consciousness Studies 3.4 (1996), pp. 38–49. 57. Shaun Gallagher, ‘Mutual Enlightenment: Recent Phenomenology in Cognitive Science’, Journal of Consciousness Studies 4.3 (1997), pp. 195–214.

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22 ON PAIN OF DEATH: THE ‘GROTESQUE SOVEREIGNTY’ OF THE US DEATH PENALTY Lisa Guenther

n 16 January 2014, Ohio prisoner Dennis McGuire was put to death with an untested mixture of lethal injection drugs.1 According to witnesses, McGuire gasped, snorted and appeared to struggle for air for ten minutes before dying.2 Columbus Dispatch reporter Alan Johnson describes the execution as follows:

O

The chemicals began flowing about 10:29 a.m., and for a while, McGuire was quiet, closing his eyes and turning his face up and away from his family. However, about 10:34 a.m., he began struggling. His body strained against the restraints around his body, and he repeatedly gasped for air, making snorting and choking sounds for about 10 minutes. His chest and stomach heaved; his left hand, which he had used minutes earlier to wave goodbye to his family, clenched in a fist. McGuire eventually issued two final, silent gasps and became still. He was pronounced dead at 10:53 a.m.3 The entire execution lasted up to twenty-six minutes – the longest since Ohio resumed executions in 1999. McGuire’s family is suing the state and the drug manufacturer Hospira for what they claim was ‘unnecessary and extreme pain and suffering during the execution process’, amounting to cruel and unusual punishment.4 In response to this accusation, prison officials claimed that McGuire was counselled by his attorney to put on a ‘big show’ by faking or exaggerating gestures of pain in order to bolster the abolitionist cause.5 Amy Borror, a spokesperson for the Ohio public defender’s office, denied these allegations, citing eyewitness reports that McGuire was unconscious at the time he began gasping and snorting.6 She added, ‘We have no way of knowing, obviously, because we can’t interview Mr. McGuire.’7 Borror’s statement highlights both the ethical limits of execution as an irreversible punishment that destroys the person who receives it, and also the epistemic limits of knowing what it is like to be executed. Dayton defence lawyer John Paul Rion argued that, even if McGuire was conscious and ‘faking it’ for ten full minutes in the middle of his execution, this would indicate that the drugs were not working as intended.8 ‘If their argument is that Dennis – for nineteen minutes – was conscious enough to exaggerate

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the pain caused by suffocation, then we believe that only substantiates the concerns that we have lodged in this case.’9 Since the execution of Dennis McGuire, there has been a series of increasingly horrific botched executions across the US. On 29 April 2014, the state of Oklahoma injected Clayton Lockett with an untested combination of drugs from a secret source.10 The execution continued for thirty-three minutes before it was finally called off; Lockett died ten minutes later from a heart attack. Several months later, on 23 July 2014, the state of Arizona executed Joseph R. Wood III by injecting him fifteen separate times over the course of two hours with a combination of midazolam and hydromorphone – the same drugs used to kill Dennis McGuire. Some witnesses reported that Wood gasped and snorted over 600 times, like a ‘fish gulping for air’.11 Others claimed that he was merely snoring, and that he could not have felt any pain during the procedure.12 Still others rejected the concern for Wood’s possible suffering, contrasting his situation with the pain of murder victims and their families, and arguing that ‘[t]hese people that do this, they deserve to suffer a little bit.’13 The gruesome details of these botched executions have raised questions for many people about the ethics of experimenting with untested lethal injection drugs. The reason for these experiments is a shortage of the anaesthetic used in the standard lethal injection protocol, following a ban by European pharmaceutical manufacturers on the use of their products for state execution.14 But it is not clear that the standard drug protocol is any less cruel, even if it is – until recently – less unusual. Is there a meaningful distinction between a botched execution and a proper one? Or must we admit that there is no good way to execute a person? What roles do pain, or the appearance of pain, and consciousness, or the appearance of consciousness, play in the ongoing legitimation of state execution? And to what extent does the state depend on an appeal to medical authority for this legitimation? This paper analyses both the appearance of a painless execution and also the social, political and legal motivation to produce such an appearance.15 Special focus will be given to the ‘consciousness check’ whereby the executioner is required to bring his own body into relation with the body of the condemned, reading his gestures for signs of awareness, before allowing the execution to continue.16 The consciousness check functions as both a biopolitical ritual of care and a necropolitical ritual of social death; its function is to conjure away the issue of pain and to legitimate the practice of state homicide by staging the execution as a performance of justice and even care.17 An aura of medical authority is crucial for this performance, even though actual medical knowledge, research and technology are neglected and even lawfully excluded from consideration by state and federal authorities. The result is a potent mixture of medical power/knowledge and carceral power/ignorance, which I analyse in terms of what Michel Foucault calls ‘Ubu-esque power’: an obscene form of sovereignty in which one’s power to act is inversely proportionate to one’s knowledge, ability and preparation for action. The ‘grotesque sovereignty’ of Ubu the King is operationalised by the ‘assiduous bureaucracy’ of Ubu the Pen-pusher: the ‘mediocre, useless, imbecilic, superficial, ridiculous, worn-out, poor, and powerless functionary’.18 This is what

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capital punishment looks like today in the US: Ubu the Pen-pusher jabbing people with needles and injecting them with chemicals until they die, while Ubu the King watches from a distance.

Lethal Injection and the Will to Ignorance The legal and political legitimacy of capital punishment in the contemporary US depends on several key distinctions: the distinction between execution and murder, or between lawful and unlawful forms of homicide; the distinction between heinous, atrocious or cruel acts of (interpersonal) violence and humane acts of (state) violence; and the distinction between barbaric methods of execution used in the past, or by tyrannical governments, and civilised methods of execution appropriate for use by a Western democratic nation.19 The social legitimacy of the death penalty, however, is supported by a different, even opposite, set of demands: the demand for retribution, even or especially if it inflicts pain on the offender; the demand for a symmetry or symbolic connection between punishment and crime (‘an eye for an eye’); the demand for swift, effective state responses to interpersonal violence; and the demand for assurance that such acts will never happen again. For the past forty years, US Supreme Court jurisprudence on the death penalty has tried, and failed, to reconcile these competing demands. The contemporary practice of capital punishment in the US can be traced back to the early 1970s, when the death penalty was nearly abolished. In Furman v. Georgia (1972), the Supreme Court found that the application of the death penalty was so arbitrary and discriminatory that it amounted to cruel and unusual punishment, in violation of the Eighth Amendment. The decision led to a nationwide moratorium on executions, but this moratorium was lifted four years later by a second Supreme Court case, Gregg v. Georgia (1976), which introduced a set of procedures designed to address the systemic problems with capital sentencing identified by Furman. Since 1976, legal challenges to state execution have tended to focus on questionable methods and applications of the death penalty rather than on the constitutionality of capital punishment as such. Baze v. Rees (2008) is a landmark case in contemporary death penalty jurisprudence. Petitioners Ralph Baze and Thomas C. Bowling, both prisoners on Kentucky’s death row, challenged the state’s lethal injection protocol on the grounds that it produced unconstitutional levels of pain during execution.20 The issue of pain during execution raises trenchant epistemological and political questions that are at stake in both botched and ‘proper’ executions. For example: How does one know if another person is feeling pain? When disputes arise between different interpretations of another’s behaviour – between snoring and suffocating, for example – which interpretation should prevail, on what grounds, and by whose (epistemic, political, moral, technical, administrative) authority? And why should we care about pain, if we have already decided to execute a person?21 Legal scholars and political theorists such as Deborah Denno, Austin Sarat and Timothy Kaufman-Osborn have argued that, in the post-Furman era, the epistemic

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and political terrain of capital punishment in the US has been navigated through a selective, and sometimes contradictory, appeal to biomedical authority, and through a quasi-theatrical staging of state execution as a medical procedure in which the inmate/ patient is painlessly put to sleep – and put to death – on a trolley, hooked up to an intravenous machine, often with the direct participation of medical professionals such as anaesthesiologists. The result is a scene that more closely resembles euthanasia or palliative care than the glorious display of sovereign power in public execution and torture, and yet it nevertheless functions to support the sovereign right ‘to kill and let live’, even in an ‘age of abolition’ where nearly every other democratic state in the world has ceased to practise capital punishment.22 The standard lethal injection protocol was invented in 1977 by Dr Jay Chapman, an Oklahoma medical examiner who, according to Human Rights Watch, had ‘no expertise in pharmacology or anesthesia and who did no research to develop any expertise’.23 In his own words, Chapman was ‘an expert in dead bodies but not an expert in getting them that way’.24 In spite of this lack of knowledge, and motivated in part by his own personal support for capital punishment,25 Chapman proposed a three-drug cocktail for lethal injection: (1) a general anaesthetic, sodium thiopental; (2) a paralytic, pancuronium bromide; and (3) an electrolyte, potassium chloride, to induce cardiac arrest. Chapman thought the first drug should be enough to kill a person, if administered in a sufficiently high dosage, but given the variability of responses to general anaesthetics, both from person to person and from moment to moment, he added additional drugs to hasten the process and guarantee results. There is widespread agreement among doctors and lawyers that the second and third drugs in the protocol could cause constitutionally unacceptable levels of pain if administered without a sufficient level of anaesthetic depth, but the function of the second drug is highly disputed, both among medical professionals and in the courts. According to some, the paralytic hastens death by paralysing the lungs and diaphragm to stop respiration.26 As evidence for this claim, supporters refer to the practice of euthanasia in the Netherlands, where a paralytic drug is sometimes used to ensure completion of the procedure and to suppress involuntary movements, which could be upsetting to the patient’s family and friends.27 According to others, however, the use of a paralytic in state execution ‘serves no therapeutic purpose’.28 Rather, it introduces the risk that the prisoner may experience the pain of suffocation and/or massive cardiac attack while paralysed and be unable to communicate his pain or awareness to others.29 As evidence for this risk, objectors refer to the American Veterinary Medical Association and the Humane Society, which have banned the use of paralytic drugs in animal euthanasia on the grounds of animal cruelty.30 Even Dr Chapman admitted in a 2007 interview with CNN that if he were creating a lethal injection protocol now, forty years after his initial formulation, he ‘would probably eliminate’ the paralytic drug.31 Chapman added, ‘We kill animals more humanely than people.’32 In spite of this substantive dispute over the cruelty and effectiveness of the paralytic drug, Chapman’s three-drug protocol has never been subject to serious medical or scientific scrutiny.33 Rather, the three-drug protocol was adopted and standardised

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across the US because of its capacity to survive legal scrutiny. The state legislature of Oklahoma adopted lethal injection as their standard execution method on 11 May 1977, followed by Texas the very next day, and by Idaho and New Mexico soon after.34 By 2002, nearly every death penalty state had switched to lethal injection, in part to avoid legal challenges to other, more evidently brutal execution methods, such as electrocution, hanging, firing squads and the gas chamber. But as Austin Sarat has shown in his historical survey of execution methods, lethal injection has the highest rate of botched executions (at 7.1%, compared to 1.9% for electrocution and 0% for firing squads).35 Even the very first use of lethal injection in 1982 was botched by the state of Texas, and since then, executions lasting up to two hours have been recorded.36 From the beginning, then, lethal injection has failed to deliver on its promise of a humane, painless and reliable method of execution. Like the prison system itself, lethal injection seems to thrive on its own failure, and to avoid or refuse the sort of knowledge and research that might help to reduce the chance of botched executions.37 The US Supreme Court has been instrumental in perpetuating this failure and legitimating state ignorance, even in the name of upholding the Eighth Amendment’s ban on cruel and unusual punishment. In Baze v. Rees (2008), the Supreme Court affirmed the constitutionality of the three-drug lethal injection protocol, arguing that an ‘isolated mishap alone’ does not violate the Eighth Amendment because ‘such an event, while regrettable, does not suggest cruelty or a “substantial risk of serious harm”.’38 Citing Gregg v. Georgia, the plurality opinion argued that ‘[b]ecause some risk of pain is inherent in even the most humane execution method, if only from the prospect of error in following the required procedure, the Constitution does not demand the avoidance of all risk of pain.’39 Baze established a three-part standard for assessing the level of risk, which requires an evaluation of ‘(a) the severity of pain risked, (b) the likelihood of that pain occurring, and (c) the extent to which alternative means are feasible’.40 In order to get relief from the court, then, death row prisoners must prove that the current execution method poses an unconstitutional risk of serious harm, and also propose a readily implemented alternative; in other words, the most they can hope for is the right to choose their own poison. Many of the arguments in Baze v. Rees turn on epistemic issues concerning the possibility of the prisoner’s conscious awareness and/or suffering during execution, and the degree to which the state is obliged to acknowledge or address this possibility. On one hand, the court acknowledges that the three-drug protocol was inadequately researched and haphazardly adopted by death penalty states across the US.41 On the other hand, the court also defends the states’ legitimate interest in carrying out executions, whether or not they know what they are doing. In the plurality opinion for Baze v. Rees, written by Justice Roberts and endorsed by Justices Alito and Kennedy, the state’s ‘earnest desire’ to conduct humane executions overrides any legal or ethical requirement to base its execution protocols on careful research. Roberts warns against the risk of ‘transform[ing] courts into boards of inquiry charged with determining “best practices” for executions’.42 Justice Thomas concurs, citing the court’s own lack

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of expert knowledge as a reason to stay out of such matters, even if that means continuing to uphold potentially unconstitutional execution methods: We have neither the authority nor the expertise to micromanage the States’ administration of the death penalty in this manner . . . I reject as both unprecedented and unworkable any standard that would require the courts to weigh the relative advantages and disadvantages of different methods of execution or of different procedures for implementing a given method of execution.43 Rather than requiring states to justify their choice of execution protocols, the court accepts as ‘undisputed’44 the states’ ‘earnest desire to provide for a progressively more humane manner of death’.45 But this acceptance renders the state’s claim to conduct ‘humane’ executions tautological. All state executions are humane. Why? Because the state says so. On what grounds, or by what authority, should we accept this claim? On the grounds of its own sovereign authority to declare its ‘earnest desires’. But what is a state, and how should we adjudicate its desires, earnest or otherwise? This is where the conversation ends – and where a (carefully circumscribed) appeal to medical authority begins, as a supplement to the otherwise unquestionable, but ultimately unjustifiable, authority of the state’s sovereign power to kill and let live. The epistemic authority of the state’s avowed commitment to ‘humane’ execution protocols is grounded in the state’s political authority to claim a monopoly on legitimate violence, and to pursue its ‘legitimate interest in carrying out a sentence of death in a timely manner’.46 But given the tension between a quick and effective death penalty system and a careful, comprehensive review of execution methods and individual cases, the state also has an interest (legitimate or otherwise) in granting itself permission not to know, or wilfully to ignore, certain claims and possibilities. Other state agencies may be practically or legally obliged to develop ‘best practices’ and to ‘weigh the relative advantages and disadvantages of different methods’ for everything from sanitation contracts to security systems, but when it comes to state execution, such knowledge is unnecessary and even obstructive to justice. The political and epistemic authority of the contemporary death penalty state is ultimately grounded in a legally sanctioned power/ignorance that Foucault might call ‘Ubu-esque power’. Ubu-esque power is a grotesque investment of sovereign power in outrageously incompetent subjects. Foucault calls it a ‘vile’ and ‘arbitrary’ form of sovereignty where, ‘by virtue of their status, a discourse or an individual can have effects of power that their intrinsic qualities should disqualify them from having.’47 The less knowledge, skill or capacity for judgement someone has, the more they are invested with the power to act in ways that affect others. The US death penalty system generates multiple examples of Ubu-esque power, from the medical examiner who invented the three-drug protocol, to the legislatures that adopted it without research or testing, to the correctional officer who is called upon to insert an intravenous drip and monitor anaesthetic depth with little or no training, to the Supreme Court that disavows the right and responsibility to make judgements about state execution methods, and displaces this obligation on to ‘administrative personnel’, while at the same time shielding

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states from the obligation to research or compare execution methods. Highly qualified and knowledgeable experts may be trotted in and out of courts or consulted by legislatures on high-profile commissions, but as long as the state is protected from meaningful and effective criticism, their knowledge ultimately serves the interests of Ubu-esque power/ignorance, as an alibi, prop or protective cloak for homicidal state violence. This is the role that medical discourses have played in the US death penalty since the late 1970s. In the next section, I will argue that US death penalty states have developed and consolidated a form of Ubu-esque power/ignorance through a selective appeal to medical authority, technology and practices, which simultaneously protects or ‘firewalls’ state execution from conflicting and potentially undermining forms of medical knowledge and research. The result is a judicial sanction, and even a judicial demand, for ignorance on the part of state actors in the most serious life-or-death issues. In effect, medical props and rituals function as supplements to state power and legal authority in order to resolve the potential legitimation crisis created by their own wilful ignorance.

Palliative Care for the Condemned The twenty-first-century American death house resembles a hospital room, with a few notable exceptions. A trolley is outfitted with white sheets and thick leather straps for binding the arms, legs and chest of the condemned. An intravenous drip stands beside the trolley or is threaded through the wall into a separate room from which lethal injection drugs are administered. The condemned prisoner is often dressed in white or pale blue scrubs, not just on the day of execution but for their entire period of incarceration on death row. Clean, polished floors and plain institutional walls suggest a range of possible functions: care, punishment, instruction, administration. The room could be a setting for surgery or post-surgery recovery, if not for the partitioning of space around the lethal injection chamber, which speaks to the specificity and social context of state execution. Mirrored windows allow witnesses to watch the procedure from a separate room, sometimes without being seen. Blinds are opened and closed to allow witnesses to watch the execution while protecting the identity of medical professionals and others involved in the procedure. Family of the victim(s) and family of the condemned are either seated on opposite sides of the witness area or divided into different rooms. Closed-circuit television gives another view of the execution, and a microphone hangs from the ceiling above the trolley to amplify the last words of the condemned. An array of telephones in the control room stand by, ready to receive lastminute reprieves or rejections from the Governor or the courts. In many states, medical professionals such as anaesthesiologists or physicians may be involved in the procedure, in spite of professional medical associations that ban their participation in executions. The ethical guidelines of the American Medical Association state unequivocally that a ‘physician, as a member of a profession dedicated to preserving life when there is hope of doing so, should not be a participant in a legally authorised execution.’48 And yet, these guidelines do not have the force of law, and

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many states have sought to immunise doctors from professional discipline by guaranteeing their anonymity and/or by defining lethal injection as a non-medical procedure, to which the Hippocratic Oath does not apply.49 Depending on the state, physicians and other medical professionals may be allowed, or even required, to insert intravenous drips, inject lethal injection drugs, monitor the inmate’s vital signs, and advise or train the correctional staff on some or all of these activities, in addition to pronouncing the death of the inmate and signing the death certificate.50 Dr Carlo Musso is a physician who participated in executions in Georgia, in spite of his own personal opposition to the death penalty. He justified his involvement in state execution as follows: We, as doctors, are not the ones deciding the fate of this individual. . . . The way I saw it, this is an end-of-life issue, just as with any other terminal disease. It just happens that it involves a legal process instead of a medical process. When we have a patient who can no longer survive his illness, we as physicians must ensure he has comfort. [A death-penalty] patient is no different from a patient dying of cancer – except his cancer is a court order.51 This line of reasoning has also appeared in legal contexts – for example, in Conner v. N.C. Council of State (2007), where the judge waxed poetic about the healing vocation of physicians, and yet still justified their involvement in state execution as a form of ‘palliative care’: Angel of mercy, not agent of harm, is the role the inmates seek for the doctor. They want help, not harm, from a doctor. Palliative care from a doctor to prevent unnecessary suffering, prior to a person being injected with lethal drugs which can cause excruciating pain, is not unprofessional or unethical.52 In order to make sense, such arguments require both a conflation of the medical and the legal realms, such that state execution becomes legible as yet another terminal disease, and a strict partitioning of the two realms, such that the ‘angel of mercy’ who participates in lethal injection procedures does not become legible as an ‘agent of harm’ or an accessory to state homicide. Legal scholar Deborah Denno argues that, by ‘coming up with a method of execution that makes an inmate look serene, comfortable, and sleeping during the death process, the death penalty in this country was rescued’.53 In her extensive work on death penalty jurisprudence, Denno emphasises both the crucial importance of medical professionals and technologies for the appearance of a ‘visually palatable’ method of execution, and the striking disconnection of this appearance from a sound basis in medical research.54 In her 2007 study of lethal injection protocols across the US, Denno found evidence of what I would call, following Foucault, Ubu-esque power: The study demonstrates that states have continued to produce grossly inadequate protocols that severely restrict sufficient understanding of how executions are performed and heighten the likelihood of unconstitutionality. The analysis emphasizes in particular the utter lack of medical or scientific testing of lethal injection despite

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the early and continuous involvement of doctors but ongoing detachment of medical societies.55 In some cases, the further entrenchment of Ubu-esque power has resulted from otherwise well-intentioned efforts to reduce the risk of painful executions, given the failure of efforts to abolish capital punishment as such. One of the more striking examples of this effect is the use of ‘consciousness checks’ to ensure that inmates are adequately sedated before potentially painful drugs are administered. In her dissenting opinion in Baze v. Rees, Justice Ruth Bader Ginsburg acknowledges the risk of cruel and unusual punishment posed by Kentucky’s standard lethal injection procedure and notes that, ‘[b]ecause most death-penalty States keep their protocols secret, a comprehensive survey of other States’ practices [for managing this risk] is not available.’56 But rather than calling for more transparency in lethal injection procedures, or problematising the death penalty as such, Ginsburg suggests implementing simple ‘consciousness checks’, in which a member of the execution team visually and manually checks the inmate’s level of awareness before allowing the second and third drugs to be administered. According to an expert witness for the state of Kentucky in Baze v. Rees, and also for the state of Florida in Florida v. Lighthouse, such procedures are used in ‘basic life support classes’ and in ‘the operating room’.57 However, in contrast to the standard medical technologies for monitoring anaesthetic depth, such as the blood pressure cuff and electrocardiography monitor called for by petitioners in Baze v. Rees, consciousness checks are inexpensive and easily implemented by correctional departments, with or without the participation of medical professionals.58 In short, any fool could perform a ‘consciousness check’, without additional expenses or delays for the state, even if they openly admit, as Kentucky’s warden did under oath, that they ‘honestly don’t know what you’d look for’.59

The ‘Consciousness Check’ as Necro-biopolitical Ritual What is a consciousness check, and to what extent might it reduce the risk of suffering during execution? Tennessee’s execution protocol outlines the procedure for a consciousness check as follows: 1) After 5 grams of [the anesthetic] sodium thiopental and a saline flush have been dispensed, the Executioner shall signal the Warden, and await further direction from the Warden. 2) At this time the Warden shall assess the consciousness of the condemned inmate by brushing the back of his hand over the inmate’s eyelashes, calling the condemned inmate’s name, and gently shaking the condemned inmate. 3) Observation shall be documented. If the condemned inmate is unresponsive, it will demonstrate that the inmate is unconscious, and the Warden shall direct the Executioner to resume with the administration of the second and third chemicals. If the condemned inmate is responsive, the Warden shall direct the Executioner to switch to the secondary IV line.60

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Lacking an objective test for the presence or absence of conscious awareness, the warden is called upon to perform a series of gestures that are both surprisingly intimate and woefully inadequate for assessing the inmate’s current level of anaesthetic depth or his capacity to feel pain for the duration of the procedure. Regardless of his own particular intellectual capacities, emotional disposition and political views, the warden is put in a structural position of grotesque sovereignty; he is asked to embody an expertise in matters that even trained anaesthesiologists would be reluctant to claim with any certainty, especially without the help of medical technologies. Is the inmate still conscious? Has he lost the capacity to feel pain? How much stimulus can the inmate withstand before regaining consciousness? The ritual of the consciousness check also forecloses a whole set of philosophical questions, such as: What is consciousness? How do we know when someone is experiencing pain? And to what extent does the ritual of the consciousness check exploit the warden’s own capacity to ‘read’ the body of the condemned in order to justify a process that is designed to render that body permanently unreadable? What responsibility does the state bear for this deployment of one person’s epistemic and ethical capacities in order to facilitate the destruction of an other? Once the consciousness check has been performed, the execution can continue with no ‘substantial risk of serious harm’. But this is not because no harm is being done; after all, whether or not the condemned inmate feels pain, they are in the process of being put to death. The reason why there is no apparent risk of serious harm, even in this act of homicide, is because the ritual performance of the consciousness check has conjured away that appearance and put in its place (the appearance of) an object that cannot be harmed because it cannot feel. We know that it cannot feel because the warden has used the responsive capacities of his own embodied consciousness to verify that the body on the trolley no longer responds like a conscious, animate other. It might as well be dead. In the end, this is the juridical function of the consciousness check: to pronounce the social and civil death of the prisoner, so that its biological death can be accomplished without the appearance of an act of homicide or a violation of the inmate’s constitutional right to freedom from cruel and unusual punishment. From the perspective of the state, the socially dead prisoner is safe from harm; the inanimate body on the trolley may be pumped full of chemicals, and these chemicals may produce a change in its physical characteristics – its skin colour may shift from pink to blue to purple, for example, as it did for Steve Henley in Tennessee61 – but official witnesses should not take these perceptible changes to indicate anything like pain or suffering because, as the warden has verified, there is no longer a conscious person there to feel pain or suffering. The prisoner, having ‘checked out’ of consciousness, is already a corpse, but if this is the case, then a proper execution is not really an execution at all; it is merely a procedure in which a physical object undergoes certain changes in response to chemical stimuli. The more significant moment in an execution would be the consciousness check in which the prisoner is pronounced dead to the possibility of their own suffering, and therefore dead to the world.

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But if this analysis holds, then the only proper execution would be the botched execution: not the quiet scenario of falling asleep after the warden’s bedtime story but the ‘big show’ that Dennis McGuire is accused of staging, where witnesses cannot help but perceive the death throes of the prisoner, where they are drawn back into a visceral relation with the condemned as the subject of a life, and of a death. Only as ‘botched’ does the execution appear as an execution, as the putting to death of a person by the state. The botched execution provides what the proper execution cannot: the gruesome spectacle of suffering, torture and killing. It thus satisfies the public demand for painful retribution, even while adhering to the constitutional demand for a painless execution. By relieving states of the obligation to research, compare or critically examine its lethal injection protocols, while invoking an aura of medical authority and recommending the performance of consciousness checks that are almost certainly inadequate to measure the inmate’s capacity for suffering, the Supreme Court may have found a way to reconcile the double demand for pain and painlessness, both through the blunt instrument of the law and beyond it. The implications of this practice for medical humanities demand a critical reworking of both the meaning of the ‘medical’ (in relation to the legal and political) and the meaning of the ‘humanities’ (to the extent that the discipline continues to rely upon distinctions between human and animal, proper and improper, humane and inhumane, which the practice of lethal injection renders questionable, or even absurd). In the end, what we need is not a clarification of these distinctions or a rectification of state power, such that the norms of punishment begin to approximate more closely the respect for human dignity that theorists of liberal democracy avow, and that the courts continue to invoke, even as they reinscribe the Ubu-esque power of brutal state violence. Rather, a critical practice of medical humanities demands an abolition of the death penalty in all its forms, through a radical reconfiguring of meaning and power.62

Further Reading Deborah Denno, ‘The Lethal Injection Quandary: How Medicine Has Dismantled the Death Penalty’, Fordham Law Review 76.1 (2007), pp. 49–128. Jacques Derrida, The Death Penalty, Volume I, ed. Geoffrey Bennington, Marc Crépon and Thomas Dutoit, trans. Peggy Kamuf (Chicago: University of Chicago Press, 2014). David Garland, Peculiar Institution: America’s Death Penalty in an Age of Abolition (Oxford: Oxford University Press, 2010). Timothy Kaufman-Osborn, From Noose to Needle: Capital Punishment and the Late Liberal State (Ann Arbor: University of Michigan Press, 2002). Austin Sarat (ed.), Pain, Death, and the Law (Ann Arbor: University of Michigan Press, 2001).

Notes 1. The experimental lethal injection protocol used to execute Dennis McGuire consisted of the sedative midazolam and the painkiller hydromorphone.

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2. Lawrence Hummer, ‘I Witnessed Ohio’s Execution of Dennis McGuire. What I Saw was Inhumane’, The Guardian, 22 January 2014 (accessed 23 January 2014). 3. Alan Johnson, ‘Inmate’s Death Called “Horrific” Under New, 2-Drug Execution’, Columbus Dispatch, 17 January 2014 (accessed 18 January 2014). 4. John Bacon, ‘Family of Ohio Inmate Sues Over Drawn-out Execution’, USA Today, 27 January 2014 (accessed 5 September 2014). 5. Tracy Connor, ‘Ohio Lawyers Deny Coaching Executed Man to Put On “a Big Show” ’, NBC News, 28 January 2014 (accessed 5 September 2014). 6. Julie Carr Smyth, ‘Dennis McGuire Faked Slow Suffocation “To Put On This Big Show”, Ohio Prison Guards Say’, Huffington Post, 27 January 2014 (accessed 29 January 2014). 7. Ibid. 8. Connor, ‘Ohio Lawyers Deny Coaching Executed Man to Put On “a Big Show” ’. 9. Ibid. 10. Josh Levs, Ed Payne and Greg Botelho, ‘Oklahoma’s Botched Lethal Injection Marks New Front in Battle over Executions’, 23 July 2014 (accessed 25 July 2014). The drugs used to execute Clayton Lockett were midazolam (a sedative), vecuronium bromide (a muscle relaxant) and potassium chloride (an electrolyte that induces cardiac arrest). Lockett’s execution was preceded by another botched execution in Oklahoma on 9 January 2014, just days before the execution of Dennis McGuire. Michael Lee Wilson was executed by the state of Oklahoma with a non-standard drug combination involving pentobarbital from a secret source (most likely, a compounding pharmacy). His last words before losing consciousness were, ‘I feel my whole body burning.’ See Charlotte Alter, ‘Oklahoma Convict Who Felt “Body Burning” Executed With Controversial Drug’, Time, 10 January 2014 (accessed 11 January 2014). All of these drugs have been tested on animals and have therapeutic medical uses when administered in the proper dosage and in the right circumstances. Pentobarbital is commonly used to euthanise pets. 11. Dana Ford, Amanda Watts and Jason Hanna, ‘Another Botched Execution? Inmate Gasps During Two-hour Execution’, CNN, 23 July 2014 (accessed 25 July 2014). 12. Mark Berman, ‘Arizona Execution Lasts Nearly Two Hours; Lawyer Says Joseph Wood was “Gasping and Struggling to Breathe” ’, Washington Post, 23 July 2014 (accessed 2 August 2014). 13. Quoted in Rheana Murray, ‘Family of Victims Shows No Sympathy at Killer’s Execution’, ABC News, 24 July 2011 (accessed 19 July 2014). The final speaker is Richard Brown, husband of Jeanne Brown, the daughter and sister of Wood’s two victims. Jeanne Brown told reporters,

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I don’t believe he was gasping for air; I don’t believe he was suffering. It sounded to me like was snoring . . . You don’t know what excruciating is. What’s excruciating is seeing your dad laying there in a pool of blood, seeing your sister laying there in a pool of blood. This man deserved it. And I shouldn’t really call him a man. (quoted in Ford, Watts and Hanna, ‘Another Botched Execution?’) 14. See Lisa Guenther, ‘Executions, Botched and Proper’, New APPS, 24 January 2014 (accessed 6 July 2014). 15. For a detailed discussion of lethal injection and the fantasy of a painless, instantaneous death, see Kelly Oliver, Technologies of Life and Death: From Cloning to Capital Punishment (Bronx: Fordham University Press, 2013), as well as her forthcoming ‘Making Death a Penalty: Or, Making “Good” Death a “Good” Penalty’, in Geoffrey Adelsberg, Lisa Guenther and Scott Zeman (eds), Death and Other Penalties: Philosophy in a Time of Mass Incarceration (Bronx: Fordham University Press, 2015), pp. 95–105. 16. I have used the masculine pronoun throughout to refer to people on death row, since over 98% of death row inmates are men. However, this statistical fact should not be taken as an adequate representation of reality. For a critical discussion of women on death row, see Victor L. Streib, ‘Rare and Inconsistent: The Death Penalty for Women’, Fordham Urban Law Journal 33.2 (2006), pp. 609–36. 17. By biopolitics, I mean an exercise of power through the management and optimisation of the life of a population; it is the power to ‘make live and let die’, in distinction from both sovereignty (which exercises power through the right to kill or let live) and disciplinary power (which exercises power through the production of docile bodies who do not need to be punished because they already discipline themselves). See Michel Foucault, The History of Sexuality, Volume 1, trans. Robert Hurley (New York: Vintage Books, 1990), pp. 135–59. By necropolitics, I mean the intersection of biopower and sovereign power, the point at which racism emerges to make sense of the ‘cut’ between those who must live and those who may die or must be killed for the sake of the overall health of the population. See Achille Mbembe, ‘Necropolitics’, trans. Libby Meintjes, Public Culture 15.1 (2003), pp. 11–40, and Giorgio Agamben, Homo Sacer: Sovereign Power and Bare Life, trans. Daniel Heller-Roazen (Stanford: Stanford University Press, 1998). 18. See Michel Foucault, Abnormal: Lectures at the Collège de France, 1974–1975, trans. Graham Burchell (London: Picador, 2004). My understanding of Ubu-esque power as a feature of current carceral systems is indebted to Brian Collins’s MA thesis, ‘Autonomy in Education: Implications for the Institution and the Subject’ (Department of Education, University of Limerick, April 2014). Foucault’s concept of Ubu-esque power refers to Alfred Jarry’s 1896 play, Ubu the King, trans. Beverly Keith and G. Legman (Mineola, NY: Dover, 2003). Ubu is a greedy, disgusting and brutal ruler who engages in childish, absurd and bawdy escapades; the play, Ubu the King, is considered a precursor to and inspiration for Theatre of the Absurd, surrealism and the Situationist International. 19. For a discussion of these and other distinctions in relation to the theologico-political structure of sovereignty, see Jacques Derrida, The Death Penalty, Volume I, ed. Geoffrey Bennington, Marc Crépon and Thomas Dutoit, trans. Peggy Kamuf (Chicago: University of Chicago Press, 2014). 20. The petitioners lost their case, but both men remain on death row pending further reviews of the state’s execution protocol. Jason Riley, ‘Flawed Executions in Other States Cause

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21. 22.

23. 24.

25.

lisa guenther More Death Penalty Scrutiny in Kentucky’, WDRB, 30 May 2014 (accessed 15 June 2014). For an account of the aesthetics of pain, and the limits and possibilities of representing the pain of others, see Suzannah Biernoff, ‘Picturing Pain’, in this volume, pp. 163–85. On sovereignty as ‘the right to kill and let live’, see Michel Foucault, ‘Society Must Be Defended’: Lectures at the Collège de France, 1975–1976, trans. David Macey (New York: Picador, 2003). On the US death penalty in the ‘age of abolition’, see David Garland, Peculiar Institution: America’s Death Penalty in an Age of Abolition (Oxford: Oxford University Press, 2010). Human Rights Watch, So Long as They Die: Lethal Injections in the United States, 14 April 2006, p. 2. Quoted in Jeffrey Toobin, ‘Cruel and Unusual’, New Yorker, 23 December 2013 (accessed 29 January 2014). See Deborah Denno, ‘The Lethal Injection Quandary: How Medicine Has Dismantled the Death Penalty’, Fordham Law Review 76.1 (2007), pp. 49–128. In an email to Deborah Denno, Chapman expressed his own views about the legal demand for a painless execution: Perhaps hemlock is the answer for all the bleeding hearts who completely forget about the victims – and their suffering – Socrates style. The things that I have seen that have been done to victims is [sic] beyond belief. And we should worry that these horses’ patoots should have a bit of pain, awareness of anything – give me a break. (quoted in Denno, p. 75, note 151)

26. 27.

28. 29.

30.

31.

32.

But even Chapman is critical of the way lethal injection protocols have been applied: ‘[I] never knew we would have complete idiots injecting these drugs . . . [w]hich we seem to have’ (quoted in Denno, p. 73). Ibid., p. 56. Atul Gawande, Deborah W. Denno, Robert D. Truog and David Waisel, ‘Physicians and Execution – Highlights from a Discussion of Lethal Injection’, New England Journal of Medicine 358.8 (2008), p. 448. Baze v. Rees, 128 S. Ct. 1520 (2008), at 1524. See Gawande et al., ‘Physicians and Execution’, p. 448, as well as Atul Gawande, ‘When Law and Ethics Collide: Why Physicians Participate in Executions’, New England Journal of Medicine 354 (2006), p. 1221; and Baze v. Rees, at 1542. Baze v. Rees, at 1542. Twenty-three states across the US have banned the use of a paralytic in animal euthanasia, including many states that continue to use paralytic drugs in state execution. Thank you to Geoff Adelsberg for his research assistance on Baze v. Rees, and to Kelly Oliver for sharing this research with me. Elizabeth Cohen, ‘Lethal Injection Creator: Maybe it’s Time to Change Formula’, CNN, 7 May 2007 (accessed 15 May 2014). Ibid. For a very different account of the relation between human and non-human animals in relation to animal-assisted interventions with people on the autistic spectrum, see David Herman, ‘Trans-Species Entanglements: Animal Assistants in Narratives about Autism’, in this volume, pp. 463–80. See also my discussion of the relation between solitary confinement and the intensive confinement of non-human animals in zoos, laboratories and

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33. 34. 35. 36. 37.

38. 39. 40. 41. 42. 43. 44. 45. 46. 47. 48.

49.

50. 51. 52. 53. 54.

55. 56. 57. 58. 59.

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factory farms, in Lisa Guenther, Solitary Confinement: Social Death and its Afterlives (Minneapolis: Minnesota University Press, 2013), pp. 125–60. Denno, ‘The Lethal Injection Quandary’, p. 70. Ibid., p. 78. Austin Sarat, Gruesome Spectacles: Botched Executions and America’s Death Penalty (Stanford: Stanford University Press, 2014). Denno, ‘The Lethal Injection Quandary’, p. 79; see also Gawande, ‘When Law and Ethics Collide’, p. 1223. On the self-perpetuation of carceral power through its own constitutive ‘failure’, see Michel Foucault, Discipline and Punish: Birth of the Prison, trans. Alan Sheridan (New York: Vintage Books, 1979). Baze v. Rees, at 1524. Ibid. Ibid., at 1529. In his concurring opinion, Justice Stevens notes the absence of critical scrutiny in the adoption and standardisation of Chapman’s lethal injection protocol (ibid., at 1545). Ibid., at 1531. Ibid., at 1561. Ibid., at 1527. Ibid. Baze v. Rees, at 1537. Baze v. Rees also affirms the state’s ‘legitimate interest in providing for a quick, certain death’ (at 1535). Foucault, Abnormal, pp. 11–12. American Medical Association, ‘Opinion 2.06 – Capital Punishment’ (accessed 29 August 2014). For a discussion of ethics guidelines for participation in executions issued by other medical professional associations, see Gawande, ‘When Law and Ethics Collide’, p. 1223. Hippocratic Oath – Modern Version, Nova Online . See also Adam Liptak, ‘Should Doctors Help With Executions? No Easy Ethical Answer’, New York Times, 10 June 2004 (accessed 5 September 2014). Ibid. Gawande, ‘When Law and Ethics Collide’, p. 1228. Conner v. N.C. Council of State, No. 07 Gov. 0238, slip op. at 14 (N.C. Office of Admin. Hearings 9 August 2007); quoted in Denno, ‘The Lethal Injection Quandary’, p. 87. Gawande et al., ‘Physicians and Execution’, p. 449. Denno, ‘The Lethal Injection Quandary’, p. 65. Denno continues: ‘Given the lack of medical justification for lethal injection, a focus on physician participation in the method’s implementation is critical’ (p. 77). See also Gawande, ‘When Law and Ethics Collide’, p. 1222. Denno, ‘The Lethal Injection Quandary’, p. 50. Baze v. Rees, at 1570. Ibid., at 1571. For a critique of ‘expert witnesses’ in relation to Ubu-esque power, see Foucault, Abnormal, pp. 1–30. Baze v. Rees, at 1570. Ibid.

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60. Ibid. 61. Clint Brewer and Amy Griffith Graydon, ‘Henley Executed, Maintains Innocence in Final Words’, City Paper, 19 February 2009 (accessed 5 September 2014]. 62. For a brilliant critique of the current trend in death penalty abolition, which is to replace state execution with the death-in-prison sentence of life without parole, see Andrew Dilts, ‘Death Penalty Abolition in Neoliberal Times: The SAFE California Act and the Nexus of Savings and Security’, in Geoffrey Adelsberg, Lisa Guenther and Scott Zeman (eds), Death and Other Penalties: Philosophy in a Time of Mass Incarceration (New York: Fordham University press, 2015), pp. 106–29.

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23 VOICES AND VISIONS: MIND, BODY AND AFFECT IN MEDIEVAL WRITING Corinne Saunders

properly critical medical humanities is also a historically grounded medical humanities. Such historical grounding requires taking a long cultural perspective, going beyond traditional medical history – typically the history of disease, treatment and practice – to trace the origins and development of the ideas that underpin medicine in its broadest sense – ideas concerning the most fundamental aspects of human existence: health and illness, body and mind, gender and family, care and community.1 Historical sources can only go so far in illuminating such topics; we must also look to other cultural texts, and in particular literary texts, which, through their imaginative worlds, provide crucial insights into cultural and intellectual attitudes, experience and creativity. Reading from a critical medical humanities perspective requires not only cultural archaeology across a range of discourses, but also putting past and present into conversation, to discover continuities and contrasts with later perspectives. Medical humanities research is illuminated by cultural and literary studies, and also brings to them new ways of seeing; the relation is dynamic. This chapter explores the ways mind, body and affect are constructed and intersect in medieval thought and literature, with a particular focus on how voice-hearing and visionary experience are portrayed and understood. Pre-Cartesian perspectives chime surprisingly closely with current approaches, illuminate the complex inter-relations of mind and body, and probe the power of affect in resonant and suggestive ways. They also open on to ways of understanding that are less accessible in the secularised, progressive world of the twenty-first century. This exploration takes its starting point from the Wellcome Trust-funded interdisciplinary project ‘Hearing the Voice’ (based at Durham University), which brings together researchers in psychology, psychiatry, neuroscience and a range of humanities disciplines, healthcare professionals, and voice-hearers, to explore the phenomenon of hearing voices without external stimuli.2 The typical medical term for the phenomenon, ‘auditory verbal hallucinations’, makes usually tacit assumptions concerning the nature of the experience explicit. Voice-hearing is most commonly understood as a symptom of a severe mental disorder, such as schizophrenia. Yet voice-hearing is also an important aspect of many people’s lives, and an experience that may well not correspond with or be satisfactorily addressed by medical diagnosis and treatment. The lively and

A

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growing international Hearing Voices Movement addresses the limitations of a solely medical approach to coping with voice-hearing, and recognises a wide range of possible causes and kinds of experience, across cultures and historical eras.3 The ‘Hearing the Voice’ project engages with this diversity of experience through its inter-related strands addressing phenomenology, hermeneutics, cognitive neuroscience, therapeutic management and interdisciplinary working.4 What does it mean to hear voices? The hermeneutics strand of ‘Hearing the Voice’ explores voice-hearers’ own interpretations and communities of meaning, voice-hearing as religious or spiritual experience, and voice-hearing in literature from the medieval to the modern periods. As this chapter demonstrates, literary texts can recount in richly textured ways individual experiences of voice-hearing, while their imaginative worlds offer crucial insights into understandings of mind, body and affect. Fictions depend on voices for their animation, and writers across time from Augustine to Hilary Mantel have been acutely interested by voice-hearing, their works sometimes inspired by the experience of voice-hearing of different kinds, whether of spiritual voices or the voices and dialogue of individual characters. William Blake, Charles Dickens and Virginia Woolf all recount such experiences.5 Voice-hearing provides a flashpoint for the exploration of ideas of vision, spiritual experience, and the place of the self in the world. Probing the parallels and contrasts between pre-modern and contemporary experiences of and attitudes to voice-hearing both brings new insights to medieval literature and contextualises and illuminates contemporary experience through the rich cultural lens of medieval writing. The pre-Cartesian thought world of the Middle Ages is of particular interest because of its privileging of the connections between mind, body and emotion. The medieval understanding of the emotions as profoundly affective, and of cognition as shaped by affect, looks forward in intriguing ways to the theories of contemporary neuroscientists. Antonio Damasio, for example, argues both that the body is ‘the main stage for the emotions’ and that emotion enables cognition, playing a key role in rational/intellective processes.6 Arguably, it is only through our recognition of this long-embedded interconnection that mental illness can be appropriately addressed. Hippocrates’ theory of the humours, developed by Galen in the second century and central to medieval medical thought, necessitated the idea of a mind–body continuum. Both physical and mental health depended on the balance of the four humours, as did individual temperament and complexion, while each humour was also linked to the stars and planets.7 The distinction between mind and body was complex and more fluid than in post-Cartesian thought, complicated by ideas of the soul, different views on where in the body faculties were situated, and the integration of thought and affect. By the fourteenth and fifteenth centuries, when the texts discussed here were written, a new interest in psychology had developed, rooted in theological concerns about free will, intellect, desire and sin, but with its own complex physiology of thought as embodied, intimately connected to the senses and to affect, and with considerable explanatory power in relation to voices and visions. Galen had identified the motor and sensory functions of the brain, but qualities attributed to the rational soul continued to

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be associated with the heart – an association sustained in popular belief well beyond the Middle Ages. Later medieval medical and philosophical theories attributed greater powers to the brain, connecting its ventricles or cells with the different stages of cognition, which was broadly understood to be two-part: processes mediated by the physiological mechanisms of the cerebral ventricles and processes within the rational soul or mind.8 Such theories were based on the Arabic physiological paradigm of three bodily spirits: natural, vital and animal. The natural spirit, produced in the liver, moved through the veins to enable generation, nutrition and physical growth. The vital spirit, produced in the heart, moved through the arteries to give life to the body. In the brain, the vital spirit was transformed into the animal spirit, which controlled sensation and movement, but also mental processes. The senses, each associated with its own organ, were understood to be put together by the inner senses, situated in the ventricles of the brain, where both sensory and cognitive faculties were placed. Thoughts were dependent on ‘forms’, imagines, simulacra or phantasmata (Aristotle uses the term eikón, copy), sense impressions involving perception and response, put together by the inner senses, and passing through imagination, cognition and memory. Avicenna’s De Anima, translated (into Latin) in the twelfth century, describes the five cells of the brain: at the front were the sensus communis, where information was processed, and impressions retained briefly, and imaginatio, a temporary memory (together known as the phantasia); in the middle was the imaginativa, more comparable to modern imagination, which put together forms in creative ways, and the estimativa, where cognitive assessments were made; and at the back, memorialis, the storehouse of memory, where these imagines or memory-pictures were kept, imprinted, literally marked on the body through the physiological process triggered by the senses.9 For the modern reader, perhaps the term phantasmata best captures the complex quality of imagines: they are understood as the products of ‘the entire process of sense perception’, quasi-pictures or representations derived from sensory processes but with affective weight, ‘emotionally charged’.10 The middle cell of the brain, imaginativa (later called phantasy), was seen as dangerous in its potential to retrieve from memory and creatively combine phantasmata, to deceive reason, estimativa. This model of the brain allowed the notion of an inner eye and ear, and hence the possibility of visionary experience and of hearing inner voices. Such ideas also underpinned theories of mental illness. If the melancholy humour was dominant (an excess of black bile), for example, then the cognitive processes at the central part of the brain were affected, potentially resulting in depressive illness, lethargy and withdrawal; while if the choleric humour predominated (an excess of yellow bile), then the imagination at the front of the brain was affected, bodying forth too many images, potentially resulting in mania.11 Understandings of the individual mind were complicated by a profound awareness of a multi-faceted supernatural, which included not only God and the devil, but also a spirit world just beyond human reach, of angels, demons, ghosts and fairies. The supernatural might manifest itself in visitations, visions and miracles, but also in demonic intervention and temptation. Individuals were seen as subject both to supernatural beings and to cosmic powers. As Simon Kemp has argued, medieval under-

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standings of how thought worked provided a compelling way of combining ideas of supernatural influence with notions of physiological processes. Phantasmata could be the direct result of sensory perception, or could be retrieved from the memory; they could also be produced by the imprint of the divine or the demonic on the susceptible imagination. Augustine had suggested that ‘if the workings of the inner senses can be affected by God and his angels, they might also be affected by demons’; this idea was especially developed in relation to medieval dream theory.12 Dreams might be prophetic or oracular, divinely or demonically inspired, reflect the workings of the emotions and imagination, or be caused by physiological processes; the challenge was to assess their causes and significance.13 How do these concepts illuminate voice-hearing? Research into medieval theories of thought has emphasised the importance of images and prioritised vision, rather than any notion of the inner ear. This reflects the emphasis of medieval writing, but also the dominance of sight in hierarchies of the senses from ancient to modern.14 Yet the ear and other senses had a crucial role to play in understanding, as early modern historians have recently demonstrated in relation to aural history.15 What is referred to as ‘vision’ in medieval writing in fact tends to be multi-sensory. Indeed, a question central to the ‘Hearing the Voice’ project is that of whether the privileging of hearing voices, particularly in the context of psychotic experience, is a modern phenomenon, and perhaps one that fails to capture more complex actual experience.16 Medieval understandings figure the imagination and memory as shaped by affective and cognitive responses. From them arise both images and voices, not always solicited and potentially unbalancing the mind. This experience may intersect with and be shaped by experience of the supernatural. Later medieval psychology provides an explanatory framework for visionary experience and voice-hearing, while these could also be authorised through supernatural explanations. Medieval experience, of course, included madness and deviance, but the medieval thought world also allowed for voices, visions and other kinds of unusual experience that did not fit these paradigms. Medieval literary texts can thus illuminate, complicate and validate voice-hearing today. The deep connection between mind, body and affect, and the relevance of this for voice-hearing, are most evident in the religious writing of the Middle Ages. Devotional literature relies on the notion that affective experience can open the way to the soul’s deeper understanding of the self and the divine – and potentially to visionary experience. But in romance writing too, the interconnection of mind, body and affect is crucial: the body is both responsive to external forces and reflective of the interior. Affect is visibly written on the body, but also shapes and transforms the mind and creates individual identity. Notions of the supernatural and the power of affect shape the most influential romance topos of all, that of lovesickness, just as they do mystical experience. This chapter looks first at the romance works of Chaucer, a highly intellectual writer with strong medical interests, and then at the religious writings of Julian of Norwich and her near-contemporary, Margery Kempe. Chaucer is explicitly engaged with the new medical psychology of

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his time, while Julian’s theological sophistication brings a deep familiarity with the psychology of visionary experience; Margery’s text offers insights into more popular understandings of visionary psychology. These fourteenth- and fifteenth-century authors all engage with voices of and beyond the mind, probing the intersection of interior and exterior, natural and supernatural forces. The literary past offers new perspectives on the present through its sophisticated and detailed realisation of voice-hearing and visionary experience. Chaucer’s writings are shaped and informed by the intellectual developments of his time, including in science, natural philosophy and medicine. Partly because of this, he is typically thought of as a realist writer, and it is easy to forget how frequently he employs the idea of the supernatural across his writings, from personified gods to speaking birds. Imagination and intellect intersect, as he returns repeatedly to the subject of love as an invasive force affecting body and mind, using and complicating the widespread medieval literary convention of the wound effected by the God of Love. His strikingly medicalised perspective reflects an interest across his œuvre in physiology and psychology: in particular, new theories concerning the senses, the cells of the brain and the relation of mind, body and affect that resonate in striking ways with much more recent ideas. Chaucer’s Knight’s Tale (the first of the Canterbury Tales, but probably written as a separate work early in the 1380s) adapts Boccaccio’s Il Teseida to recount the love and fatal rivalry of two cousins, Palamon and Arcite, for the lady Emilye. Chaucer plays with the neo-Platonic convention of the eyes as leading to the heart in his description of how, gazing on Emilye, both are suddenly wounded by love, ‘by aventure or cas’ (chance or destiny, 1074). Yet the lovers are also carefully distinguished: Palamon ‘chronically smitten’ in conventional terms, Arcite ‘morbidly lovesick’.17 Chaucer situates Arcite’s malady as an illness of the brain with extreme physiological symptoms: . . . lene he wex* and drye as is a shaft*; His eyen holwe* and grisly to biholde, His hewe falow* and pal as asshen colde . . . So feble eek were his spiritz, and so lowe, And chaunged so, that no man koude knowe His speche nor his voys, though men it herde. And in his geere* for al the world he ferde* Nat oonly lik* the loveris maladye Of Hereos,18 but rather lyk manye,* Engendered of humour malencolik Biforen, in his celle fantastik. (1362–76)

*he grew lean *sunken *sickly yellow

*stick

*conduct *behaved *as if suffering from *mania

The description draws on medical ideas concerning the influence of affect on the brain, available to Chaucer, for instance, through the work of Bartholomaeus Anglicus, translated by John of Trevisa.19 Trevisa describes how the passions of the soul engender the melancholy humour, which works on the ‘celle fantastik’, the front ventricle of the

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brain controlling the imagination. In a state of melancholy, the subject loses the ability to judge and reason; in a state of mania, as here, the imagination cannot perceive new images but sees only the beloved. The withdrawing of the vital spirit weakens Arcite’s body and voice, while loss of heat occasioned by the overactive imagination causes his eyes to grow hollow and his countenance pale, and fixes the image of the beloved even more firmly in the brain.20 Gaze, sight, image: these may seem to allow little scope for the concept of voice. Yet human and supernatural voices are crucial to the tale. The lovers’ laments, soliloquies and dialogues – often accompanied by loud wailing, ‘youlyng and clamour’ (1278) – are set against the voices of the gods to whom they pray. Most complex is Emilye’s multi-sensory supernatural experience in the temple of Diana, of fire, whistling brands, drops of blood, clattering arrows, and the goddess herself appearing and speaking, but Mars also speaks to Palamon, murmuring ‘Victorie’, and we hear too Saturn’s dialogue with Venus. Supernatural experience is also combined with interiority, to evoke the play of external arbitrary forces beyond individual control on the inner senses and imagination to evoke affective and cognitive responses. Arcite in sleep ‘thoughte how that the wynged god Mercurie / Biforn hym stood and bad hym to be murie’, commanding him to Athens: ‘Ther is thee shapen of thy wo an ende’ (1384–92). The dream vision of the messenger of the gods is a conventional device, but Chaucer’s use of the verb ‘thoughte’ is suggestive, implying the workings of the mind in dream, and the imprint of the supernatural on the imagination. The scene immediately precedes Arcite’s catching up of a great mirror in which he sees how the malady has so transformed him, and again thought is emphasised: ‘right anon it ran hym in his mynde’ that he was unrecognisable (1402). The tale vividly dramatises the tension between internal and external forces that shapes the texture of human experience, and the workings of the individual mind. Chaucer’s care concerning the physiological representation of affect and thought is subtly evident in his early dream-vision poem The Book of the Duchess, probably written in the 1370s as a memorial to the wife of John of Gaunt, Blanche, Duchess of Lancaster, who died aged twenty-three in 1368/9. In this poem, mind, body and voice interweave on different levels, and here too the supernatural has a role to play. The narrator’s processes of thought are carefully depicted: ‘sorwful ymagynacioun / Ys alway hooly in [his] mynde’ (14–15). Image-pictures held in his memory are repeatedly revisited, creating ‘fantasies’ in his head and causing a melancholy which has ‘sleyn [his] spirit of quyknesse’ (26). Though it is never made explicit, we assume that his illness of the past eight years, for which there is only one physician, is love-sickness. Taking up ‘a romaunce’ (48), probably Ovid’s Metamorphoses, he reads in the tale of Ceyx and Alcyone of how the god of sleep, Morpheus, is summoned by Juno, to inhabit Ceyx’s dead body and recount to Alcyone her husband’s drowning, urging recovery from grief. The narrator’s prayer to Morpheus leads in turn to his own dream vision, a complex dialogue that probes the psychology of the mysterious Man in Black, whom the Dreamer encounters while wandering in a dark forest and who, like Alcyone, proves to be lamenting the death of his beloved. While cryptic allusions

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link him to John of Gaunt, the Man in Black is a pattern of melancholy, a pale figure of death whose spirits have fled into his heart: ‘y am sorwe, and sorwe ys y’ (597). As well as his extended conversation with the Dreamer, we hear both the Man in Black’s complaint, ‘a lay, a maner song, / Withoute noote, withoute song’ (471–2), and his inner dialogue. For modern readers, the account of this is strikingly congruent with contemporary theories in cognitive psychology of the workings of inner speech21: he spak noght But argued with his owne thoght, And in hys wyt disputed faste Why and how hys lyf myght laste; Hym thoughte hys sorwes were so smerte* And lay so colde upon hys herte. (504–8)

*painful

Cognitive psychologists have suggested that disruption in the processes of inner speech may be key to voice-hearing, creating the effect of voices in the mind no longer within an individual’s control. The Man in Black is depicted as experiencing vividly this kind of all-consuming inner dialogue: like the Dreamer at the start, he is lost in his ‘sorwful ymagynacioun’. This turbulent process is gradually ordered as he is led through his dialogue with the Dreamer to recreate, through the images retrieved from memory, a picture of his lost duchess. The picture is multi-sensory and embodied: we hear not only of Blanche’s ideal courtly virtues, but also her ‘lokyng’ (870), movement, voice and touch, of the entire process of their love, and finally, of her death. The process of image-making finally reanimates Blanche within the imagination, allowing the Man in Black to articulate her death and to move beyond a traumatised, dissociative state of profound withdrawal. The disruptive, all-consuming images and voices of grief are contained, and the insomniac narrator too is restored to action, the writing of the poem that creatively memorialises the beloved. In the later books of his epic romance Troilus and Criseyde, Chaucer develops these ideas further. Troilus and Criseyde assumes and exploits the literary conventions of love-sickness, filling them out with medical and psychological detail. Love is an invasive, physical and mental force, a wound with which the God of Love punishes Troilus for laughing at the foolishness of lovers. Like the Knight’s Tale, the poem relies on the neo-Platonic convention of the link between eyes and heart: on first seeing Criseyde, Troilus’ heart is caused to ‘sprede and rise’ as if on fire, wounding and quickening his ‘affeccioun’ (I, 278, 296). Sensual perception acts on the vital spirit to occasion emotion – felt at once in body and mind. Chaucer uses ancient notions of heart as seat of both thought and feeling, but at the same time plays on the cognitive aspects of emotion by emphasising the ways in which affect shapes the imagination: Troilus’ thought ‘gan quiken and encresse’, and he makes ‘a mirour of his mynde’ in which he sees ‘al holly hire figure’ (I, 443, 365–6). Throughout the process of Troilus’ love, his affective experience is extreme: he feels that ‘with hire look [will die] the spirit in his herte’ (I, 306), and again and again, the

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illness of the heart pervades the body. When Criseyde fails to return from the Greek camp and her betrayal becomes apparent, Troilus is literally unmade by love: He so defet was, that no manere man Unneth hym myghte knowen ther he wente; So was he lene, and therto pale and wan, And feble, that he walketh by potente.* (V, 1219–22)

*crutch

He complains of grievous pain around his heart. Chaucer also emphasises his cognitive processes: Troilus’ ‘herte thoughte’ is so constantly on Criseyde, ‘so faste ymagenynge’ (V, 453–4) that he cannot be distracted by feasting and revelry. Imagining is, literally, image-making of a multi-sensory kind: Troilus has the ‘proces’, the course of events, ‘lik a storie’ in his memory (V, 583–5). His mind repeatedly circles back not only to images but also to the voice of his beloved: he hears her melodious singing, ‘so cleere / That in my soule yet me thynketh ich here / That blisful sown’ (V, 578–80). As he rereads her letters, he sits ‘refiguring hire shap, hire wommanhede, / Withinne his herte, and every word or dede / That passed was’ (V, 473–4). He sees in his mind’s eye himself as emaciated and pale, and hears in his mind’s ear the comments of onlookers, ‘men seyden softe’, on his transformed, melancholy state (626). Like the Man in Black, he repeatedly sings to himself of his lady, and his grief too leads him to ‘argue with his owne thought’ and dispute in his wits. While memory is so often conceived of as working through visual images, then, these can as readily be sounds retrieved from the storehouse of the mind, recreated in the imagination, heard by the inner ear, but in a way that is intrusive and all-consuming. These texts convey an impression not of wilful construction of internal voices, nor of psychosis, but of voices bodied forth in the mind as a result of extreme emotion. Such ideas resonate powerfully with recent psychological theories of voices as originating in traumatic experience, and as aspects of dissociative behaviour.22 It is in the mystical writing of the Middle Ages that supernatural voices are most fully explored. Mysticism stressed the individual humanity of Christ, and the power of affect to move the individual to spiritual understanding; it had a special appeal for women, who were unlikely to have access to the Latin theological tradition of the Church. Though it is with vision that mystical experience is most typically associated, mystical texts also provide striking cultural models of authorised voice-hearing. For voice-hearers in the twenty-first century, Julian of Norwich and Margery Kempe provide powerful historical examples, while their works offer compelling explorations of the nature of visionary experience. For the mystic, extreme physical affect, whether achieved through illness, ascetic practice or rapt contemplation, can occasion an altered or detached state that opens the inner eye and ear.23 Thus Julian of Norwich prays to be brought near to death, so that she may ‘lyven more to the worshippe of God’, and it is in her extreme illness in 1373 (at the age of about thirty) that she experiences her visions.24 Many of the sixteen ‘sheweings or

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revelations’ (1, 1) are compelling in their physicality and often multi-sensory, though ‘sheweing’ is the term most commonly used and images of the eye, seeing and revelation recur throughout the book, which is both informed by a profound familiarity with theological tradition and startlingly innovative in its argument. Julian demonstrates an intense engagement with the embodied nature of experience and with the connections between senses, affect and cognition. She is discriminating in the details she offers, identifying different types of visionary experience. Some visions are seen with the ‘bodily sight’, as in her extended vision of the crucified Christ (10, 14). Others occur within the mind, as on the occasion when her ‘understondynge’ is ‘led downe into the see-ground’, to see its green hills and valleys and comprehend the reach of God’s protection even under deep water (10, 15). Still others occur within the ‘gostly’ or spiritual eye, as in her early vision of the Lord as ‘clotheing that for love wrappeth us’ (5, 7), or Mary, seen ‘gostly in bodily likeness’ (4, 6). Sometimes these kinds of vision coexist: ‘al this was shewid by thre: that is to sey, be bodily sight and by word formyd in my understondyng and be gostly sight’. The last is the most difficult to convey (9, 14). In all cases, the physical opens on to profound spiritual meaning. In her depiction of Christ’s bleeding body, Julian is explicit about how apparently physical experience is occasioned through God’s revelation to the inward eye: ‘In all the tyme that he shewed this that I have said now in ghostly sight, I saw the bodyly sight lesting of the plentious bledeing of the hede’ (7, 10). Visions may be horrifyingly graphic, as in the description of the body of Christ withering on the Cross, and are often multi-sensory. Even in the sixteenth and last revelation, Julian experiences in sleep the terrifying presence of the devil, grinning, red and black-spotted, taking her by the throat; waking, she sees the smoke and smells the stench of fire and brimstone (66, 108). For her, the fire is ‘bodily’, but those with her do not perceive it; it is experienced through the inward senses, on which God works. Medieval theories of the inner senses, which may be activated by the supernatural to imprint the imagination, readily allow for such a model. While the ‘sheweings’ are fully multi-sensory, their affect is most of all characterised by direct experience of the divine voice. Julian is precise about seeing and hearing: in the first vision, God shows her the universe as ‘a littil thing’ like a hazel nut, and she ‘lokid thereupon with the eye of my understondyng and thowte: “What may this be?” ’. She hears the answer spoken: ‘It is all that is made’ (5, 7). Julian conveys the impression of direct speech, ‘our good lord seid’ (14, 21), and throughout is explicit about hearing His voice within her mind: ‘And I was answered in my reason’ (10, 15); ‘Than had I a profir in my reason as it had be frendly seyd to me’ (19, 28). She distinguishes that experience from her own reasoning and thoughts, which are depicted in terms of contemplation, anxiety, wondering, and trying to interpret. Understanding may also be like hearing instructive words: ‘And al this shewid he ful blisfully, meneing thus: “Se I am God” ’ (11, 18–19). Voices are heard in the mind but also in the soul. Julian conveys a keen sense of a different kind of inner voice: ‘Than he, without voice and openyng of lippis, formys in my soule these words’ (13, 20). All these experiences fit the modern phenomenology of voice-hearing, where voices can

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be interior or exterior, but can also occur as thought insertions associated with the mind or soul, or as aspects of felt presences.25 One stage in Julian’s journey of faith is the process of believing that the ‘sheweings’ are not just madness. The Lord responds by complementing bodily with spiritual sight: ‘he shewid it al agen within, in my soule, with more fulhede [detail] . . . seyand these word full mytyly and full meekly: “Witt it now wele, it was no raving that thou saw this day . . .” ’ (70, 113). The difficulty of belief is revisited in the late vision of the devil, which is accompanied by a vision of two people chattering earnestly yet inaudibly, ‘calculated’, Julian writes, ‘to stirre me to dispeir’ (69, 112). This description resonates powerfully with some contemporary accounts by voice-hearers of the intrusive, frightening and sometimes plural experience of auditory hallucinations – of hearing a plethora of voices that may not be comprehensible.26 For Julian, God’s power is evident in the terrifying obscurity of the mind, as well as in the marvellous process of vision. Seeing is distinguished from understanding: only after twenty years does Julian comprehend the meaning of the visions enough to write the narrative she calls A Revelation of Divine Love. As she contemplates the showings, she hears the voice of God speaking the interpretation: ‘It is sothe that synne is cause of all this peyne, but al shal be wele, and al shal be wele, and al maner thing shal be wele’ (27, 39). The ‘sheweings’ are also listenings and conversations, which through their affective and cognitive force open on to deep spiritual understanding. The power of the inner eye and ear are acutely evident in The Book of Margery Kempe (written c. 1436–8), which writes mystical vision in less intellectual and more extreme terms than Julian’s Revelation. Though her name is frequently linked with that of Julian, from whom she sought advice, Margery’s life could not have been more different: she was married, bore fourteen children, ran a brewing business, and travelled on pilgrimage as far as Rome and Jerusalem. She was also, however, a visionary who adopted a strongly religious ascetic life. Her Book steps in and out of the established tradition of female spiritual revelation, instancing a range of holy women such as St Bridget of Sweden. Though Margery’s book differs dramatically from Julian’s more intellectual, reflective narrative, it too conveys the multi-sensory quality of vision, suggests the crucial role of voice in such experience, and differentiates between different kinds of voice-hearing. Again, the distinction of vision from raving is crucial. Margery’s first experience is one of madness, characteristically all-encompassing in its physical quality of shrieking devils who paw at her as if to swallow her up in their fiery mouths. In response Jesus appears, restoring Margery to her wits: owyr mercyful Lord Crist Jhesu . . . aperyd to hys creatur, whych had forsakyn hym, in lyknesse of a man, most semly, most bewtyuows, and most amyable that evyr mygth be seen wyth mannys eye, clad in a mantyl of purpyl sylke, syttyng upon hir beddys syde, lokyng upon hir wyth so blyssyd a chere that sche was strengthyd in alle hir spyritys, seyd to hir thes wordys: ‘Dowtyr, why hast thow forsakyn me, and I forsoke nevyr the?’27

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In subsequent visions, Christ is vividly depicted as Margery’s lover: ‘Therfore most I nedys be homly wyth the and lyn in thi bed wyth the . . . take me to the as for thi weddyd husbond, as thy derworthy derlyng . . . thu mayst boldly take me in the armys of thi sowle and kyssen my mowth, myn hed, and my fete as swetly as thow wylt.’ (I.36) Margery adopts a life of chastity, assured by Christ that her spiritual worth is comparable to that of virgins in heaven, though demonic visions, often grotesquely sexual, recur across Margery’s experience, gesturing to the difficulty of this ascetic life. Margery, like Julian, emphasises the ‘gostly eye’. Here, such seeing is shorthand for the engagement of all senses as Margery enters into a dramatic spiritual world, where she participates in definitive biblical scenes: the encounter of Mary and her sister Elizabeth, the birth of Christ, Mary Magdalene and the disciples after Christ’s death, Mary’s death and the Passion itself. Margery busies herself as the maidservant of St Anne, looking after the child Mary; begs clothes and food in Bethlehem, swaddling the baby; and after the Crucifixion, returns again to serve Mary by making ‘a good cawdel’, a drink of gruel and spiced wine (I, 81). Margery sublimates her feminine roles as mother and housekeeper to enact them within the world of the inward eye, to serve not her husband and family but Christ, in the enactment of the Incarnation. But despite the powerfully multi-sensory quality of Margery’s experience, the voice remains pre-eminent. Lying in bed, she hears ‘wyth hir bodily erys a lowde voys clepyng: Margery’; on her waking, God speaks directly to her, ‘Dowtyr’ (I, 54). The book is shaped by Margery’s conversations with God, often described as visitations while she is praying or contemplating. Her vision of St Anne is inspired by her direct question as she lies in meditation, ‘Jhesu, what schal I thynke.’ Jesus’ instruction, ‘Dowtryr, thynke on my modyr,’ opens on to the vision, described in terms of seeing, ‘anoon sche saw’, but fully multi-sensory (I, 6). The narrative distinguishes between the experience of an external voice, and Jesus answering Margery ‘in hir sowle’ (I, 58). As with Julian, there is an awareness of different ways of hearing as there is of different kinds of seeing: exterior, interior, in the mind, in the soul. Sounds more generally become a special aspect of God’s teaching. One of Margery’s earliest visions is auditory: ‘a sownd of melodye so swet and delectable, hir thowt, as she had ben in paradyse’ (3, 61). She emphasises the diversity of sounds, heard with the bodily ear, that characterise her revelatory experience: Thys creatur had divers tokenys in hir bodily heryng. On was a maner of sownde as it had ben a peyr of belwys blowyng in hir ere. Sche, beyng abasshed therof, was warnyd in hir sowle no fer to have for it was the sownd of the Holy Gost. And than owr Lord turnyd that sownde into the voys of a dowe, and sithyn he turnyd it into the voys of a lityl bryd whech is callyd a reedbrest that song ful merily oftyntymes in hir ryght ere. And than schuld sche evyrmor han gret grace aftyr that sche herd swech a tokyn. And sche had been used to swech tokenys abowt twenty-five yer at the writyng of this boke. (I, 36)

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The emphasis on sound seems fitting for an author whose voice is marked, not by words only, but also by mysterious ‘cryings’: ‘plentyvows terys and boystows sobbyngys, . . . lowde cryingys and schille schrykyngys’ that cannot be contained (I, 44; I, 28). The weeping that begins with Margery’s first vision of heaven continues over her entire life, becoming more extreme when she travels to Jerusalem; the more she tries to contain this ‘krying and roryng’, the more it bursts out ‘wondyr lowde’ (I, 28). Tears are a crucial aspect of affective piety and such behaviours can confirm holiness; accounts of compulsive tears and cries occur in the lives of Mary of Oignies, Catherine of Siena and Angela of Foligno. Margery’s recognition of the strangeness of her own conduct is also a recurring subject of her conversations with the Lord, and the book realistically depicts the mixed reception she receives: while some are moved, many are annoyed; others believe her to be ill or possessed. The strange invasion of the body becomes at once a physical sign sent by God, a spiritual test, and the means to illumination of the soul. As well, Margery’s cryings become the voice of vision, reflecting the ineffability of the divine, the impossibility of fully articulating vision in language. Margery’s unusual behaviours have been diagnosed as various medical conditions, from hysteria to psychosis to temporal lobe epilepsy.28 Her early illness is readily understood as postnatal psychosis.29 Her compulsive crying, sometimes accompanied by falling on the ground and turning blue, suggests epilepsy; and it is not uncommon for seizures to be accompanied by auditory–visual hallucinations.30 The flying white spots that Margery takes to be angels may be explained as the optical disturbance that accompanies migraine. There are ‘proximal’ triggers for her experience, most often ‘the silence of a church or oratory’; and ‘distal’ triggers, in particular the experience of childbirth.31 However, neurological and psychopathological explanations are also limited: there is no evidence for positive voices heard during seizures, and certainly not for extended conversations with the Lord; while to interpret Margery’s voice-hearing in the silence of churches as a phenomenon of loneliness seems reductive, especially given her quite remarkably social existence.32 Modern medical interpretations demonstrate to an extent that Margery could have had the experiences she describes, but they also show how far those experiences surpass clinical description and explanation. Margery’s Book makes their strangeness explicit, but also authorises them; in a secular society lacking the explanatory frame of the supernatural, they seem considerably stranger.33 Within biomedical discourse, only the language of delusion and hallucination is available. Non-medical accounts of voice-hearing and unusual experience in the healthy population provide closer analogues, particularly those of religious experience, including within evangelical, Catholic and Quaker communities, but also within Islamic, Asian and African traditions.34 As with these, Margery’s unusual experiences must be approached as aspects of her religious experience and spiritual development, in keeping with the mystical writings and biographies of other holy women that shaped her individual piety. Hers is a specifically and idiosyncratically female imitatio Christi – the model offered by so many contemplative texts – distinguished by its unique combination of ‘voluntary and involuntary’ elements.35

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Medieval writing, then, can richly illuminate cultural history, and can speak in powerful ways to modern experiences of voice-hearing, while offering new perspectives that challenge and complement straightforward and often limiting medical explanations. In different ways, medieval writers vividly realise voices in and of the mind. Chaucer is deeply engaged with sense perception, imagination and cognition, and memory, and with the power of image-making. His evocation of mind, body and affect is consonant with modern notions of the dialogic mind, as well as with models of how severe distress or trauma can cause intrusive thoughts and memory replay. Chaucer, however, like Julian of Norwich and Margery Kempe, also evokes a world in which supernatural voices intervene. The works of Julian and Margery open out the nature of this visionary experience, depicting its complex multi-sensory quality, its all-consuming power, its revelatory potential and profound spiritual meaning, but also the difficulties of comprehending such experience. The voices evoked in these works – internal and external; in the mind and in the soul; inspiring, instructive, protective, cautionary, forbidding, evil and tempting – continue to figure in the experiences of voice-hearers. The difference between past and present lies in the ways that such voices are understood – then, as aspects of lived experience that were allowed for by the medieval world view; now, most often as symptoms of psychosis. In the biomedical world view, concepts of delusion and hallucination have replaced ideas of supernatural voices and visions. Yet the voices of medieval texts remain deeply resonant for voice-hearers, whose experience may be much richer than the biomedical perspective suggests. The medieval thought world is compelling in its openness to supernatural experience and in its notion of an inner eye and ear that can produce images and voices within the landscapes of the mind. Reading medieval texts can enact the project of the critical medical humanities by putting the past and present into dialogue and by demonstrating the transformative potential of taking a long cultural perspective. In reading the past, we more richly read ourselves.

Further Reading Mary Carruthers, The Book of Memory: A Study of Memory in Medieval Culture, Cambridge Studies in Medieval Literature 10 (Cambridge: Cambridge University Press, 1990). Mary Carruthers, The Craft of Thought: Meditation, Rhetoric and the Making of Images, 400–1200, Cambridge Studies in Medieval Literature 34 (Cambridge: Cambridge University Press, 1998). Faye Getz, Medicine in the English Middle Ages (Princeton: Princeton University Press, 1998). Ruth Harvey, The Inward Wits: Psychological Theory in the Middle Ages and the Renaissance, Warburg Institute Surveys 6 (London: Warburg Institute, University of London, 1975). Simon Kemp, Medieval Psychology, Contributions in Psychology 14 (New York: Greenwood Press, 1990). Jerome Kroll and Bernard Bachrach, The Mystic Mind: The Psychology of Medieval Mystics and Ascetics (New York: Routledge, 2005). Simon McCarthy-Jones, Hearing Voices: The Histories, Causes and Meanings of Auditory Verbal Hallucinations (Cambridge: Cambridge University Press, 2012).

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Corinne Saunders and Jane Macnaughton (eds), Madness and Creativity in Literature and Culture (Basingstoke: Palgrave Macmillan, 2005). Nancy G. Siraisi, Medieval and Early Renaissance Medicine: An Introduction to Knowledge and Practice (Chicago: Chicago University Press, 1990). Jacqueline Tasioulas, ‘ “Dying of Imagination” in the First Fragment of the Canterbury Tales’, Medium Ævum 82 (2013), pp. 212–35.

Notes 1. History represents a recurrent strand and subject of interrogation across this Companion: relevant contributions include those of Volker Scheid on the influence of Chinese medicine; Lauren Kassell’s consideration of the transition from paper to digital technologies in medical records; Cynthia Klestinec’s inquiry into touch and compliance in early modern medicine; Jennifer Richards and Richard Wistreich’s study of the anatomy of the Renaissance voice; and Peter Garratt’s discussion of Victorian literary aesthetics and mental pathology. Medieval medical history has focused on medical theory and practice, with attention to humoural medicine, disease and surgery, and the role of women and the community in medicine and care. See further Malcolm L. Cameron, Anglo-Saxon Medicine, Cambridge Studies in Anglo-Saxon England 7 (Cambridge: Cambridge University Press, 1993); Faye Getz, Medicine in the English Middle Ages (Princeton: Princeton University Press, 1998); Nancy G. Siraisi, Medieval and Early Renaissance Medicine: An Introduction to Knowledge and Practice (Chicago: Chicago University Press, 1990); Charles H. Talbot, Medicine in Medieval England (London: Oldbourne, 1967); and the work of Monica H. Green on medieval women’s medicine. 2. ‘Hearing the Voice’ ( (accessed 31 May 2015)) is funded by Wellcome Trust Strategic Awards WT086049 and WT098455MA. I am grateful to the Trust for supporting the research in this paper, and to the ‘Hearing the Voice’ and ‘Life of Breath’ teams for their insights. 3. See the extensive website of the Hearing Voices Network: and Intervoice, the website of the International Hearing Voices Network: (accessed 31 May 2015). 4. Recent interdisciplinary research on voice-hearing includes Angela Woods, Nev Jones, Marco Bernini, Felicity Callard, Ben Alderson-Day, Johanna C. Badcock, Vaughan Bell, Chris C. H. Cook, Thomas Csordas, Clara Humpston, Joel Krueger, Frank Laroi, Simon McCarthyJones, Peter Moseley, Hilary Powell, Andrea Raballo, David Smailes and Charles Fernyhough, ‘Interdisciplinary Approaches to the Phenomenology of Auditory Verbal Hallucinations, Schizophrenia Bulletin 40 (2014), suppl. 4, pp. S246–54; Charles Fernyhough and Simon McCarthy-Jones, ‘Thinking Aloud about Mental Voices’, in Fiona Macpherson and Dimitris Platchias (eds), Hallucination: Philosophy and Psychology (Cambridge, MA: MIT Press, 2013); Eleanor Longden, Learning from the Voices in my Head (New York: TED Books, 2013); Simon McCarthy-Jones, Hearing Voices: The Histories, Causes and Meanings of Auditory Verbal Hallucinations (Cambridge: Cambridge University Press, 2012); and Simon McCarthy-Jones, Joel Krueger, Frank Larøi, Matthew Broome and Charles Fernyhough, ‘Stop, Look, Listen: The Need for Philosophical Phenomenological Perspectives on Auditory Verbal Hallucinations’, Frontiers in Human Neuroscience 7 (2013), p. 127. 5. See ‘Inner Voices’ (), a series of short articles and blog posts on ‘Hearing the Voice’ in The Guardian, which presents the interim findings of the ‘Writers’ Inner Voices’ project (), a

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6.

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qualitative study of literary creativity exploring how writers experience the voices, presence and agency of their characters (both accessed 31 May 2015). Antonio Damasio, The Feeling of What Happens: Body, Emotion and the Making of Consciousness (London: Vintage, [1988] 2000), p. 287; the argument of this book is developed further in his Descartes’ Error: Emotion, Reason and the Human Brain (London: Vintage, [1994] 2006). See Roy Porter’s summary, The Greatest Benefit to Mankind: A Medical History of Humanity from Antiquity to the Present (London: HarperCollins, 1997), p. 9, and his discussion of classical and medieval medicine, pp. 44–134; see further Simon Kemp, Medieval Psychology, Contributions in Psychology 14 (New York: Greenwood Press, 1990). See further Edwin Clarke and C. D. O’Malley, The Human Brain and Spinal Cord: A Historical Study Illustrated by Writings from Antiquity to the Twentieth Century (San Francisco: Norman Publishing, [1968] 1996). The details given here of the five cells are indebted to the lucid summary in Jacqueline Tasioulas, ‘ “Dying of Imagination” in the First Fragment of the Canterbury Tales’, Medium Ævum 82 (2013), pp. 212–35 (pp. 216–17). See further the detailed discussion in Ruth Harvey, The Inward Wits: Psychological Theory in the Middle Ages and the Renaissance, Warburg Institute Surveys 6 (London: Warburg Institute, University of London, 1975), pp. 43–64; and the numerous figures and explanatory discussion in Edwin Clarke and Kenneth Dewhurst, An Illustrated History of Brain Function: Imaging the Brain from Antiquity to the Present, 2nd edn (San Francisco: Norman Publishing, 1996), pp. 8–53. For the definitive work on medieval memory, see Mary Carruthers, The Book of Memory: A Study of Memory in Medieval Culture, Cambridge Studies in Medieval Literature 10 (Cambridge: Cambridge University Press, 1990); see further Mary Carruthers and Jan M. Ziolkowski (eds), The Medieval Craft of Memory: An Anthology of Texts and Pictures, Material Texts (Philadelphia: University of Pennsylvania Press, 2002); and Mary Carruthers, The Craft of Thought: Meditation, Rhetoric and the Making of Images, 400–1200, Cambridge Studies in Medieval Literature 34 (Cambridge: Cambridge University Press, 1998). Carruthers, The Book of Memory, p. 59. See further my essay ‘ “The thoghtful maladie”: Madness and Vision in Medieval Writing’, in Corinne Saunders and Jane Macnaughton (eds), Madness and Creativity in Literature and Culture (Basingstoke: Palgrave Macmillan, 2005), pp. 67–87 (pp. 70–1). Kemp, Medieval Psychology, p. 98. Macrobius, for example, in his widely circulated commentary on Cicero’s Somnium Scipionis (The Dream of Scipio), identifies five categories of dream; these were borrowed and adapted by many medieval writers, while similar ideas were contained in commentaries on Cato’s Distichs, a popular schools text. Chaucer plays with dream-vision theory across his works, in particular in his dream-vision poems and in the Nun’s Priest’s Tale. Mary Carruthers argues that the idea of an ‘ear of the mind’ was not usual, as a result of the emphasis on the visual in relation to the idea of storing images in the brain, but notes that the Rule of St Benedict urges the monks: ‘inclina aurem cordis tua’ (incline the ear of your heart), a phrase adapted from Psalm 44 and also used by St Jerome. See Carruthers, The Book of Memory, p. 27. Recent scholarship on sound and the senses includes the work of Penelope Gouk (see, for example, her study Music, Science, and Natural Magic in Seventeenth-Century England [New Haven, CT: Yale University Press, 1999]), and on reading and hearing, the work of Jennifer Richards (see, for example, Jennifer Richards and Richard Wistreich’s chapter in this

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16.

17. 18.

19.

20. 21.

22.

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corinne saunders volume, ‘The Anatomy of the Renaissance Voice’, pp. 276–93; and Richards, ‘Reading and Hearing The Womans Booke in Early Modern England’, Bulletin of the History of Medicine 89.3 (2015), pp. 434–62. See further Angela Woods, Nev Jones, Ben Alderson-Day, Felicity Callard and Charles Fernyhough, ‘Experiences of Hearing Voices: Analysis of a Novel Phenomenological Survey’, Lancet Psychiatry, 2.4 (2015), pp. 323–31. See Tasioulas, ‘ “Dying of Imagination” ’, in particular pp. 213–19. Love-sickness is termed amor hereos in a number of medieval medical texts; the term originates in Greek eros, but is influenced by Latin heros, hero, and herus, master. Robert Burton in The Anatomy of Melancholy uses the term ‘heroick love’. See further Larry D. Benson (ed.), The Riverside Chaucer, 3rd edn (Oxford: Oxford Paperbacks, [1987] 1988), explanatory notes to The Knight’s Tale, lines 1355–76. All subsequent references are to this edition, cited by line number. See Bartholomaeus Anglicus, De Rerum Proprietatibus (Frankfurt: Minerva, [1601] 1964), 5.3, and John of Trevisa, On the Properties of Things, ed. M. C. Seymour (Oxford: Oxford University Press, 1975), 1.73. Trevisa instances ‘grete thoughtes of sorwe, and of to grete studie and of drede’, but not love specifically. Tasioulas, ‘ “Dying of Imagination” ’, p. 218. See further the work of Charles Fernyhough, including ‘The Dialogic Mind: A Dialogic Approach to the Higher Mental Functions’, New Ideas in Psychology 14 (1996), pp. 47–62; ‘Alien Voices and Inner Dialogue: Towards a Developmental Account of Auditory Verbal Hallucinations’, New Ideas in Psychology 22 (2004), pp. 49–68; and his recent study Pieces of Light: The New Science of Memory (London: Profile, 2012). See further the review paper by Eleanor Longden, Anna Madill and Mitch G. Waterman, ‘Dissociation, Trauma, and the Role of Lived Experience: Toward a New Conceptualization of Voice Hearing’, Psychological Bulletin 138 (2012), pp. 28–76. On the relation of fasting to visionary experience, see further Caroline Walker Bynum, Holy Feast and Holy Fast: The Religious Significance of Food to Medieval Women (Berkeley: University of California Press, 1987). Jerome Kroll and Bernard Bachrach, The Mystic Mind: The Psychology of Medieval Mystics and Ascetics (New York: Routledge, 2005), bring to bear modern biological and psychological research on medieval mystical experience, to explain how extreme physical practices may have affected body and brain in order to create altered states of consciousness. On Julian of Norwich and Margery Kempe, see also my discussion in ‘The thoghtful maladie’, pp. 78–82. Julian of Norwich, A Revelation of Love, ed. Marion Glasscoe, revised edn, Exeter Medieval English Texts and Studies (Exeter: Exeter University Press, 1993), ch. 2, p. 3. All subsequent references are to this edition, cited by chapter and page number. For a modern translation, see Julian of Norwich, Revelations of Divine Love, trans. Clifton Wolters (Harmondsworth: Penguin, 1966); and trans. Barry Windeatt (Oxford: Oxford World’s Classics, 2015). For contextual studies, see Barry Windeatt, ‘Julian of Norwich’ in A. S. G. Edwards (ed.), A Companion to Middle English Prose (Cambridge: D. S. Brewer, 2004), pp. 67–81; and Liz Herbert McAvoy (ed.), A Companion to Julian of Norwich (Cambridge: D. S. Brewer, 2008). On felt presence, see, for example, J. Allan Cheyne and Todd A. Girard, ‘The Nature and Varieties of Felt Presence Experiences: A Reply to Nielsen’, Consciousness and Cognition 16 (2007), pp. 984–91.

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26. See further, for example, Marius Romme, Sandra Escher, Jacqui Dillon, Dirk Corstens and Mervyn Morris (eds), Living with Voices: 50 Stories of Recovery (Birmingham: PCCS, 2009). 27. The Book of Margery Kempe, ed. Barry Windeatt (Cambridge: D. S. Brewer, 2000), I, 1. All subsequent references are to this edition, cited by book and chapter number. For a modern translation, see The Book of Margery Kempe, trans. Barry Windeatt (Harmondsworth: Penguin, 1985); trans. and ed. Lynn Staley (New York: W. W. Norton, 2001); abridged and trans. Liz Herbert McAvoy (Cambridge: D. S. Brewer, 2003). For contextual studies, see John H. Arnold and Katherine J. Lewis (eds), A Companion to Margery Kempe (Cambridge: D. S. Brewer, 2004); and Clarissa W. Atkinson, Mystic and Pilgrim: The Book and the World of Margery Kempe (Ithaca, NY: Cornell University Press, 1983). 28. See Richard Lawes, ‘The Madness of Margery Kempe’, in Marion Glasscoe (ed.), The Medieval Mystical Tradition: England, Ireland, and Wales. Exeter Symposium VI: Papers Read at Charney Manor, July 1999 (Cambridge: D. S. Brewer, 1999), pp. 147–67: Lawes argues against diagnoses of hysteria and psychosis, showing that a diagnosis of temporal lobe epilepsy is more fitting, though still limited. 29. See further Lawes’s discussion, and Atkinson, Mystic and Pilgrim, p. 209. 30. See further Simon McCarthy-Jones, Hearing Voices: The Histories, Causes and Meanings of Auditory Verbal Hallucinations (Cambridge: Cambridge University Press, 2012), p. 122. 31. Ibid., p. 35. 32. See further ibid., p. 282. 33. For a lucid overview of the limits of psychopathological diagnoses in relation to Margery Kempe, see Alison Torn, ‘Madness and Mysticism: Can a Mediaeval Narrative Inform our Understanding of Psychosis?’, History and Philosophy of Psychology 13 (2011), pp. 1–14; and ‘Looking Back: Medieval Mysticism or Psychosis’, Psychologist 24.10 (2011), pp. 788–90. 34. On voice-hearing in modern evangelical tradition, see further T. M. Luhrmann, When God Talks Back: Understanding the American Evangelical Relationship with God (New York: Alfred A. Knopf, 2012). 35. McAvoy, Introduction to The Book of Margery Kempe, p. 15.

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24 VICTORIAN LITERARY AESTHETICS AND MENTAL PATHOLOGY Peter Garratt

Introduction n WHAT GOOD ARE THE ARTS? (2005), a polemic aimed at shredding many longstanding conceptions of art and aesthetic judgement, the literary critic John Carey briefly discusses a bibliotherapy project established over a decade earlier in West Yorkshire by John Duffy. This was a project in which patients with depression, stress and anxiety disorders were given the opportunity to participate in reading groups, book advice surgeries and other literacy activities, having been referred to the service by mental health practitioners – an alternative to the anti-depressant medication commonly prescribed to such patients by GPs. The service users in question were ‘helped by art’, in Carey’s words, not treated by pharmacological means.1 The initiative demonstrated the potential therapeutic benefits of reading books, while seeming to dismantle the languid association of art with uselessness or transcendence, as distilled in W. H. Auden’s phrase, ‘poetry makes nothing happen.’2 For Carey, bibliotherapy programmes like this one could not help also rubbing up against established notions of literary value, in turn reviving old questions over the nature and ends of art generally. Indeed, he cites Duffy’s work to reach for a larger argument about the proper goal of aesthetic theorising:

I

Ever since Aristotle, critics have spun their theories, but they have very seldom recorded how people feel about art, what they like, whether it has altered the way they think and behave. The history of audiences and readerships is largely a blank. Arts research needs to change direction, to look outwards, and – following the example of [Marghanita] Laski and [Pierre] Bourdieu – investigate the audience not the texts. It needs to link up with sociology and psychology and public health, and create a body of knowledge about what the arts actually do to people.3 There are no binding absolutes, Carey repeatedly insists, no lofty aesthetic criteria by which to settle definitively what counts as ‘art’, or to evaluate the worth of individual artistic works, or to judge varied human experiences of such works. Without any God’s-eye perspective on art’s ontology or teleology – what it is and what its putative ‘good’ consists in – it becomes all the more necessary to acknowledge the equal rightness of all subjective responses to aesthetic experience, in liberal and relativist fashion. This being so, critical attention ought to shift from the analysis of individual

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works, whether paintings, operas or poems, to the lives of the people that they concretely transform. As it goes on, Carey’s book – something of a sequel to his previous debunking of anti-democratic modernist aesthetics in The Intellectuals and the Masses (1992) – begins to embody its own ideal version of bibliotherapy, as Blake Morrison has noted.4 Its later chapters are taken up with discussions of particular books, or prized parts of books, chosen by Carey for their literary exemplarity (though, he says, also ‘arbitrarily’), in order to illustrate his first-hand experience of the benefits conferred by reading poems, plays and fiction.5 This involves a dangerously inconsistent appeal to the superiority of literary art over other types; Carey regards literature as uniquely able to reason and criticise, to mobilise disagreement, to stimulate a reader’s constructive imagination by exploiting indistinctness in language, and so forth, as he explains with agile reference to the likes of Shakespeare, Austen, Wordsworth, George Eliot, Conrad and Larkin. Deviating drastically from his earlier relativism, he defends this manœuvre somewhat weakly on the grounds that holding sincere beliefs about art is only an expression of the very model of subjective entitlement outlined in the book as a whole. Personal aesthetic feelings cannot be disproved. Nevertheless, it signals an unresolved tension: Carey doubts that art does us much good, not least because notions of the ‘good’ in this context often veer perniciously towards the metaphysical and abstract, with the label ‘art’ usually being reserved for a special group of revered cultural objects; at the same time, he leans heavily on examples of canonical English literature (a canon that the critic F. R. Leavis would mostly have recognised) to demonstrate that art can elicit ameliorative change in particular contexts, such as raised self-esteem in prison populations, and can even be instrumentalised as therapeutic reading practices that replace standard medical interventions in mental illness. One purpose of the present chapter is to follow through this vexed reasoning to see how it bears upon the medical humanities, which has shown a deep interest in the possibility that art, broadly defined, contains at least the potential to benefit life qualitatively and foster improvements to health. A critical medical humanities approach needs to reflect on the way that this hope is configured, and historically constituted, tied as it is to concepts and ideas that have emerged from the past. The nineteenth century will be a particular focus here, for two reasons: firstly, it witnessed the ascent of the novel as a literary form and the related rise of mental science as we recognise it today; and secondly, the example of this period helps to illuminate how the literary–aesthetic realm tends to be regarded in itself as injurious or corrupting to health even while art is valorised as an imaginative or spiritual resource capable of transforming lived experience. Something of the history of this vacillation is traced by the argument that follows, which shows that the prized therapeutic ends of literary reading, say, were not merely assumed. Part of the larger critical procedure should be, then, to open up seemingly self-evident concepts (‘art’ or ‘reading’) to greater historical scrutiny, as a way of accounting for the meanings that they bring into the present. This involves considering how and why categories such as art and literature come

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to us in the way that they do, formed by a pre-existing discourse of aesthetics that silently structures our apprehension of the imaginative experiences found in books, music, painting and performance. And this further implies a need to ask critical, selfreflexive questions about how aesthetic assumptions are put to work methodologically in medical humanities research. In what ways is literature, say, called upon as a type of evidence, and read, illuminated, excavated, and so on, by work in the field? Are creative texts treated as supple aggregations of language or rather as a transparent archive of human experience? The critical medical humanities needs, in short, to grasp how ventures such as bibliotherapy rely on shared conceptual resources that have been produced by the history of modernity itself over the last two hundred years or more, since the advent of mass literacy and the institutionalisation of literature within democratic culture.6 In fairness, by mentioning reading therapies in the vicinity of the history of aesthetics, Carey is attempting something of this sort, if mostly indirectly, and his book seems to accord with a marked increase in arts and mental health programmes.7 But a further difficulty with Carey’s position (and another point of departure for this chapter) is the way he overstates ‘the Kantian inheritance’.8 By this, Carey means the aesthetic philosophy that first emerged in the eighteenth century with Kant and which seals off art in a quasi-sacred realm of its own, both separate from and higher than mere ordinary life, to which it is sometimes mystically and inhumanly opposed. Before Kant, art was not encountered in this special sense, Carey reminds us; since the Critique of Judgment (1790) the idea has flourished into a powerful, universalising norm of Western culture. Kant thus inaugurated a style of solemnly abstract aesthetic contemplation, cued to ratify art’s intrinsic value and worth, which later epochs then revived in forms as various as the heroic figure of the Romantic artist and the modernists’ ideal of formal abstraction. It led to the hierarchy of ‘high’ and ‘mass’ taste, the division between art and the market, and it lives on in beguiling contemporary art installations found in large post-industrial gallery spaces, themselves secular cathedrals fitted to observe these Kantian ideals. The difficulty, however, with this grand narrative is that it brushes past important historical developments that fall outside the dominant post-Kantian story: notably, it may be said, Victorian debates over the nature of artistic experience, the mind, imagination and affect. In the second half of the nineteenth century, aesthetic and literary experience became matters of intense scientific interest. Discussing art was a lively concern in the nascent disciplines of psychology and psychiatry, while the huge impact of Darwin’s evolutionary theory on manifold areas of intellectual life after 1860 had the effect of turning aesthetics towards new understandings of biology and the body. As Carolyn Burdett describes it: As idealist concepts of aesthetic response based on the work of Kant and Hegel started to give way to this materialist, physiologically-based psychology, the idea of the aesthetic was simultaneously viewed as subject to the same ‘laws’ as other kinds of human and animal behaviour, and as a means to test their limits.9

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It was not so much that the influence of German idealism dissolved in the post-Romantic era – and, in any case, the British reception of both Kant and Hegel drew on some murkily eccentric English translation10 – but rather that it was not the exclusive channel in which aesthetic debate ran. It certainly became tenuous to regard works of art and literature, and the emotional responses they elicited, as disembodied, disinterested, universal phenomena. Attendant questions would include art’s relation to pleasure, health and illness, which the new Victorian sciences of the mind took up seriously. The discourse of mental pathology was attuned especially sensitively to literary aesthetics, while artistic sensibility and mental disorder were linked as symptoms of degeneracy in a broader cultural narrative of decline by the end of the century.

The Aesthetics of Victorian Mental Crisis One of the best-known examples of mental collapse – in fact, of depression – in the whole of the nineteenth century is the ‘mental crisis’ of John Stuart Mill, whose Autobiography (1873) recounts his illness in close detail.11 Mill’s case also supplies a curious example of recovery through reading. As his autobiographical narrative unfolds, it becomes clear that books, or self-administered bibliotherapy, will be held responsible for his regained mental health. The onset of his depressed state of mind is first indicated by an inability to read familiar texts in a familiar way; his recovery is dramatised as occurring – and being grasped as occurring – during a particularly vivid act of reading several months later. In 1826, the year in which his symptoms took hold, Mill describes experiencing a kind of existential hollowness (‘I seemed to have nothing left to live for’), brought on by the realisation that it was impossible to wrest happiness from his ‘object in life’: namely, his Utilitarian vision of Benthamite reform and rationalist political action.12 Up to the age of twenty, encouraged by his father’s management of his education, which imposed a staggeringly demanding regime of reading on the young Mill, this philosophy had been virtually all-consuming and lent his life the unity of a project.13 The breakdown was, as William Cohen observes, a secular crisis of faith given shape in the Autobiography by traditions of spiritual confession (‘an Augustinian narrative of fall and redemption, although in this case the crisis is over faith in Utilitarianism rather than God’).14 Mill’s preferred metaphor for the experience of depression is a thickening ‘cloud’ that fails to pass, though the following lines from Coleridge’s poem ‘Dejection’ (1802) ‘exactly describe’ the quality of his depressive illness, he says:15 A grief without pang, void, dark and drear, A drowsy, stifled, unimpassioned grief, Which finds no natural outlet or relief In word, or sigh, or tear.16 This is not the only instance of Mill channelling Coleridge to find a way into his own inner experiences; it occurs again later in the chapter when he cites the closing lines

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of the sonnet ‘Work Without Hope’ (1828) – ‘Work without hope draws nectar in a sieve / And hope without an object cannot live’ – a couplet that became, through mental repetition, inseparable from Mill’s ability to recall his state of mind while continuing with occupational duties, emptily and unfeelingly, during the year of his illness. Poetry thus authenticates his crisis. Coleridge’s words (‘a true description of what I felt’) yield more than just the solace of familiarity or pleasing similitude; rather, Mill’s own comprehension of depression gathers its meaning and force from the aesthetic domain of poetry.17 This is felt not just in the expressive potential of poetry – that is, its mimetic reach – but also in the way its expressivity contrasts so markedly with the deadening muteness of his condition, an idea that animates the lines from ‘Dejection’, where the poet’s languorous state of mind lacks any proper external manifestation or ‘natural outlet’. (In being unnatural, these grief-like feelings have strayed into pathology.) What Coleridge’s language records is the lack of any expressive route out of the mind via ‘word, or sigh, or tear’, all embodied or gestural indicators of feeling. Dejection withholds these anticipated forms of bodily communication. By refusing to speak in the embodied language of emotional expression, dejection becomes invisible to others and therefore an experience borne privately; fittingly, Mill writes, there was ‘none to whom I had any hope of making my condition intelligible’.18 Coleridgean dejection also becomes the antithesis of expression in the aesthetic sense associated with imaginative labour and creativity. Indeed, as a whole, the poem ‘Dejection’ enjoys that paradoxical stance of being a poetic declaration of poetry’s own impossibility. As it entangles the imaginative and the pathological, the Autobiography also makes an allusion to Shakespeare, a dramatist cited commonly by later Victorian psychologists for his authority on mental characteristics and behaviour. Mill reports that during his depression he frequently replayed to himself Macbeth’s words to the doctor, from V, iii: Canst thou not minister to a mind diseased, Pluck from the memory a rooted sorrow, Raze out the written troubles of the brain And with some sweet oblivious antidote Cleanse the stuff’d bosom of that perilous stuff Which weighs upon the heart? The metaphor of medicine, and the idea of an unavailable remedy, threads its way through this ultimately fraught scene, which takes place in imperilled Dunsinane as the English army advances. First there is the doctor’s disarmingly negative reply to Macbeth (‘Therein the patient / Must minister to himself’), followed closely by Macbeth’s caustic suggestion that Scotland is a ‘diseased land’ in need a ‘purgative drug’ to repel the English. Meanwhile, Lady Macbeth is reportedly in the throes of delusions (‘thick coming fancies’).19 Macbeth’s words to the doctor go in search of cleansing antidotes for her ‘mind diseased’, though his imagery ranges beyond the mind alone and embroils both ‘brain’ and ‘heart’ too, further indicating Mill’s interest in the embodied quality

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of mental disorder. Images of plucked roots and weighty stuffing help to emphasise, in early modern terms, the vulnerable physical dependencies of mind. Mill’s account makes clear that he must similarly minister to his own crisis rather than receive extrinsic help, sympathy or solidarity. The narrative makes hardly any mention of direct intersubjective engagements, as if oriented distantly to the larger social world and intuitively self-contained. Without question, this has importance for the pattern of affective heroism being disclosed and for the ethical virtues thereby enshrined (candour, suffering, renewal through feeling). Books and, in a crucial sense, acts of reading stand in for relations with absent others. As John Plotz has argued of Mill’s literary aesthetics in ‘On Poetry’, an essay first published in 1833, the private, detached practice of reading (and reading lyric poetry especially) facilitates a special, even unique, model for engaging with other minds through print – a kind of virtual sociability that operates for Mill at a mediated distance and affords remote intimacy: ‘Mill is curiously fascinated by the possibility that a reading-based mediated involvement might prove the best way for the feelings of others to make their way into an individual’s thoughts.’20 The same holds true in the Autobiography, where, moreover, such distanced interchanges of feeling are linked causally to his recovery and selfreconstruction. This is first glimpsed in a description of one highly particularised scene of reading, a narrative crux that cuts in unexpectedly: I was reading, accidentally, [Jean-François] Marmontel’s Memoires [Mill narrates] and came to the passage which relates his father’s death. . . . A vivid conception of that scene and its feelings came over me, and I was moved to tears. From this moment my burden grew lighter.21 The spontaneity of affect (those staunched tear ducts now obligingly flow) heralds the restoration of health, but it does so as a model of Victorian moral and psychological self-reliance rather than Romantic excess (Mill began writing his Autobiography in the 1850s). That is to say, his mental recovery bears only an indirect, mediated relationship to the external social realm; the outside is admitted into the enclosed site of subjectivity only by means of attention to physical books. Mill’s redemptive narrative shows him rebuilding the paucity of his inner world through aesthetic experience. In this connection, more space is devoted to describing his involved reading of Wordsworth’s poetry than any other book: What made Wordsworth’s poems a medicine for my state of mind, was that they expressed, not mere outward beauty, but states of feeling, and of thought coloured by feeling, under the excitement of beauty. They seemed to be the very culture of the feelings, which I was in quest of. In them I seemed to draw from a source of inward joy, of sympathetic and imaginative pleasure, which could be shared in by all human beings; which had no connection with struggle or imperfection, but would be made richer by every improvement in the physical or social condition of mankind. From them I seemed to learn what would be the perennial sources of happiness, when all the greater evils of life shall have been removed. And I felt myself at once better and happier as I came under their influence.22

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Interpreting literature as ‘medicine’ seals Mill’s narrative of recovery. The imagination is not untamed but instead effectively calibrated and disciplined; inner and outer now mingle proportionately. A precociously overdeveloped mind with its pathological excess of reason has required the balm supplied by poetry’s cultivation of feeling, a process that helps to reincorporate the physical body into the self’s grasp of its identity.23 The way Mill presents this transformative reading practice in this climactic passage brings it close to the orbit of Victorian psychological aesthetics, the term for the uptake of aesthetic theory by scientific writers in the second half of the nineteenth century. The use of poetry and imaginative literature more broadly in the investigation of psychological processes was an important feature of Victorian psychology and psychiatry, as these discourses moved from abstract, logical, disembodied conceptions of the mind towards new physiological and affective models.

Body, Mind and Paying Attention A sense of the shift towards scientific accounts of the physical basis of aesthetic experience can be gained from the work of a protégé of Mill, the psychologist Alexander Bain. Bain, who eventually held the Regius Chair of Logic at the University of Aberdeen, founded the journal Mind in 1870, and before that was part of a group of London intellectuals (including George Eliot) clustered around the Westminster Review. His most important work recognises the body’s influence on the formation and association of mental ideas and the intimate connections between the two Cartesian domains.24 Bain’s reading of Mill’s version of mental collapse in his Autobiography helps to illustrate the direction of his arguments: ‘That the dejection so feelingly depicted was due to physical causes, and that the chief of these causes was over-working the brain, may I think be certified beyond all reasonable doubt.’25 This neural interpretation of events subtly revises Mill’s attribution of his breakdown to a purely psychological deficiency rooted in the fragmentary effects of the association of ideas (a view, incidentally, that does not prove that Mill abandoned his father’s associationist principles in the course of his recovery, as is often assumed, for he – and Bain, too – would extend work in this epistemological and aesthetic tradition well into the Victorian period, long after Coleridge’s famous attack on eighteenth-century mechanistic psychology).26 In Bain’s reading, Mill’s crisis was to be understood as ‘an affectation of the brain’, with more embodied and longer-lasting effects than the Autobiography concedes. Mill presents the events of 1826–7 as a single transformative episode, whereas his depression was an ‘obstinate derangement’ that returned in 1836 and again in 1843 (a ‘dreadful depression of June and July’, Bain notes). In support of the idea that its cause was physical, Bain recalls that ‘doctors advised him to rest his brain.’ Moreover, it manifested as ‘involuntary nervous twitchings of the face’ and other ‘spasmodic twitching’, seemingly corroborating that view.27 Mid-Victorian culture developed an ambivalence towards the labour of the imagination and its implications for the mind of the spectator, listener or engaged reader, just as theories of mind–body continuity, such as those described by Bain, Herbert

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Spencer and the physiologist William Carpenter were entering mainstream opinion. What was the relation of the aesthetic emotions to other states of feeling? Was it possible to overstrain the senses and eye physically? Was immersive attention in a literary work, say, dubiously automatic or could it yield benefits such as enriching the sympathetic instincts? Novels of the period engage with these problems self-reflexively, of course, particularly when introducing books and readers into the fictional frame. In Charlotte Brontë’s Jane Eyre (1847), the image of the infant Jane being struck violently by a book in the opening chapter is a reminder that, in brutish hands, the printed word could become merely a dull, dense object. As much attention, if not more, is given to Jane’s physical, embodied relation to the book in this scene: there is her assault by John Reed (‘the volume was flung, it hit me, and I fell, striking my head against the door and cutting it’) but just before that also a detailed sense of Jane’s posture as a reader, sitting poised with the book on her knee.28 Her attempt to retreat to the safety and privacy of a window seat with a copy of Bewick’s History of British Birds signals both vulnerability and defiance; Jane’s rudimentary style of ‘reading’ it is wholly imaginative and powerfully affective – she journeys joyously in her mind to far-off geographical regions, prompted by its contents – but does so in excess of the subjective involvement warranted by the book itself. The ambivalence is multi-faceted: this is a kind of juvenile play as much reading proper, but then again perhaps mature reading bears some relation to play? And Jane’s pleasure at the handling of the book is matched by her use of it as a screen or marker of social withdrawal. On both counts, Jane Eyre’s act of reading falls uneasily between being a model of feminine sensitivity and of distracted inattention, between imaginative pleasure and a defiant will. These were anxieties that cut across scientific psychological explanation and cultural inquiry itself. What was the status of imaginative pleasure, and what precisely happened to the ordinary mind when absorbed in a literary work? One answer was that readers of fiction entered an ambiguous zone somewhere between the volitional and the susceptible, a point that Charles Dickens grasps when depicting would-be readers failing to read. Reading in such cases demands conscious, deliberate mental labour. David Copperfield, for example, shown learning the art of reading, is a long way from the spontaneous affect of Jane Eyre: I come into the second-best parlour after breakfast, with my books, and an exercise-book, and a slate. My mother is ready for me at her writing-desk, but not so ready as Mr Murdstone in his easy-chair by the window (though he pretends to be reading a book), or as Miss Murdstone, sitting near my mother stringing steel beads. The very sight of these two has such an influence over me, that I begin to feel the words I have been at pains to get into my head, all sliding away, and going I don’t know where. I wonder where they do go, by-the-by?29 As well as showing just how alien words feel to the mind, and the exhausting, even painful, effort of assimilating them as mental images, this tense moment of domestic education illuminates a second failure of reading: the parenthetical one attributed to the sadist Mr Murdstone, who lurks ominously behind a book in the posture of one

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engaged with reading, and yet whose feigned literary absorption signals an attention being focused oppressively on David himself. The entrancement of text and its associated states of mind was discussed in modern psychological theory, some of which Dickens certainly knew. Before writing David Copperfield (1850), he was learning about the effects and practices of mesmerism, and about medical perspectives on the workings of memory, from his new acquaintance, the London physician, John Elliotson. Rather like David, the fictional worlds of his novels – in their very scale and capacious development – appear to push at the capabilities of the reading mind as it tries to hold words in the head.30 Similar matters of readerly concentration and fatigue were discussed in early psychiatric writing. Here is Henry Maudsley, for instance, a leading authority in mental pathology in the middle decades of the nineteenth century, describing the motor–sensory and mental labour required to support the act of reading a book: The reading of an uninteresting book occasions drowsiness, and the reading of any book soon sends to sleep one who is unused to reading or who is exhausted by great muscular exertion. His attention fails, we say; in other words, he cannot keep up the nice motor adjustments so as to apprehend or grasp definitely the words and realise their meanings. Maudsley, like Bain, was a thoroughgoing physicalist who regarded mental phenomena as deriving from lower physiological states and from biological determinants generally, as in pathological conditions attributable to a malformation of the brain ‘which turns impressions to its own nature and shapes them to its liking’.31 His work repeatedly attests to the fluid territory located between sanity and insanity, a location where an excess of imaginative and superstitious activity can thrive. In this hazy ‘penumbral region’, Maudsley says, which marks out a ‘border-land of thought and feeling between soundness and unsoundness of mind’, there is an opportunity for irrational pre-modern constructs to survive, since Victorian modernity retains residues of belief and is not ‘yet not barren of wonders’.32 As an example he cites the ghost-seers and pseudoscientists who search for empirical, credible verification of supernatural agencies and occurrences, as typified by the founders of the Society for Psychical Research. One member of the Society for Psychical Research was the poet Alfred Tennyson, a literary writer drawn to the creative opportunities afforded by liminal experience. His poem In Memoriam (1850), a monumental elegy composed over many years for his friend Arthur Hallam, is almost obsessively interested in exploring the texture and feel of states of mind, or half-states, and shifts between them: phenomena between cogitation and sleep, or between will and automation, or between the purely mental and the assuredly physical. The poem’s concerns with grief, loss, belief, love, death, change and resolve are examined in places by the dramatisation of such liminality in dreaming, somnambulant movement, automated habit and so on. Haunting was something of a minor Tennyson obsession: long before he joined the Society for Psychical Research and began socialising in spiritualist circles, he presented a paper

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on ghosts before the Cambridge Apostles while an undergraduate at Trinity College, with Hallam in the room. A sense of mental suspension, of moving between definite states, is evoked in section 46 of the poem: When in the down I sink my head, Sleep, Death’s twin-brother, times my breath; Sleep, Death’s twin-brother, knows not Death, Nor can I dream of thee as dead.33 Here, the image of the speaker at rest on the feathery ‘down’ of a pillow, in the pose of one sleeping, seems to conjure the restless over-fatigue of the insomniac mind and body. The lines are ambivalently alert to the possibility that sleep and death share a fraternal bond, though one that sleep itself cannot know. Suspension, not ending, haunts each line, and furthermore finds an ally in the musical pattern of the quatrain: Tennyson’s supple abba rhyme reproduces a pattern of suspended or deferred sound, in the anticipation of the initial rhyme’s fulfilment, by which time it has become a softened, fainter, ghostly accord. Crucially, however, its readerly effect remains not immersive and mimetic but rather disjunctive. It is not just sleep here that ‘times the breath’, for the lines themselves demand a highly dexterous mouthing if recitation is to do justice to their rhythmic demand. Respiration has become more than an abstract idea in the quatrain, or a matter of its theme, and instead a realised aspect of reading’s labour.

Literary Creativity and the Pathological Aesthetic For Maudsley, intellectual overwork, and in particular the proneness of artists to excessive imaginative exertion, was liable to be linked to insanity. We have mentioned that mental scientists like Bain accepted that the operation of the higher psychological faculties had a close working relationship with the sensory–motor stratum, and that embodied emotions were a source of knowledge otherwise unavailable to the abstract thinking self. It was for this reason that Bain attributed Mill’s depression to nervous fatigue brought on by overwork. He was not, of course, the only eminent Victorian to succumb to this kind of illness. Another was John Ruskin, the great art critic of the early Victorian period and subsequently a distinctive social and political commentator. Ruskin’s mental health suffered severely at the end of his writing career: he experienced at least three severe breakdowns from the late 1870s, with depressive and psychotic symptoms. These were debilitating crises, profoundly painful for Ruskin. By this point in his career, he was writing in consciously unfashionable and unusual forms, including in self-styled letters to the working men of England known as Fors Clavigera, which was published serially during the 1870s, and in a highly unorthodox autobiography Praeterita (1885–9). Literary experiment, if not formal fragmentation, partly characterises the work of this late period. While it would be facile to regard mental breakdown and the breakdown of literary form as co-expressive phenomena, Ruskin’s own literary sensibility played an

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important role in the way that his experience was written about and diagnostically treated in print by mental scientists like Maudsley. For this is what Maudsley sought to do. Ruskin, the best-known art critic then living, is discussed as a case study of mania and delusion in Maudsley’s Natural Causes and Supernatural Seemings (1886). If this appears supremely tactless, it should be borne in mind that Maudsley’s medical account was typical of the way that psychological writing referred to notable historical, public and literary figures as a form of empirical evidence. It was a standard procedure of the genre. Francis Galton’s Hereditary Genius (1892), for example, discusses the very concept of eminence from a scientific perspective (that is, the perspective of biological inheritance) in a book that applies a statistical method to the analysis of individual greatness in family structures. Galton describes having been ‘surprised at finding how often insanity or idiocy has appeared among the near relatives of exceptionally able men’, while noting ‘a large residuum of evidence which points to a painfully close relation between the two’.34 Analysing genius into categories, Galton notes that ‘Poets and Artists’ often tend to have unstable biological inheritances, owing to the competing demands of pleasure and creative discipline: A poet, besides his genius, must have the severity and steadfast earnestness of those whose dispositions afford few temptations to pleasure, and he must, at the same time, have the utmost delight in the exercise of his senses and affections. This is a rare character, only to be formed by some happy accident, and is therefore unstable in inheritance.35 Ruskin was not a poet (he had aspirations to be one, winning the Oxford University Newdigate Prize for the best undergraduate poem in 1839), though he was committed to seeing art, and poetry, as ways of knowing. In Modern Painters III (1856) he would mystically declare that ‘seeing clearly is poetry, prophecy, and religion,—all in one.’36 For Maudsley, Ruskin’s breakdown and delirium may have been linked to overwork, and possibly to a sense of personal failure, but he could ‘appreciate the state of things much better than [his physicians] did’, by distinguishing between ‘what was definitely diseased in the brain-action from what was simply curative—had there been time enough—of the wounded nature in him’.37 Ruskin’s own narrative account of his experience of delusion adopts the language of brains rather than minds; it speaks of the precise and sharp distinction between the state of morbid inflammation of brain which gave rise to false visions, and the not morbid, however dangerous, states of more or less excited temper, and too much quickened thought, which gradually led up to the illness, for example, as if suddenly in the role of the alienist.38 Maudsley commends this perspective, for it demonstrates an underlying strength of will and perspective amidst severe psychosis. But Ruskin, who believed this pre-delusional period of mania brought temporarily heightened creative powers as a writer, is at odds with the psychiatrist here. Despite their apparent accord, Maudsley maintains that mania is not genuinely

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creatively fruitful, such perception being symptomatic of the crisis; rather, sufferers like Ruskin habitually find ‘redeeming excuses and explanations’ or seek ‘obstinate refuge in some entrenchment of the ruins’ of their mental collapse.39 The larger point that Maudsley wishes to illustrate in his detailed reading of Ruskin’s mental illness is that his mania, delirium and delusions do not result from some extrinsic accident or circumstance, such as the onset of disease; they symptomatise a deformed growth of his mind. The cause of Ruskin’s breakdown is ‘morbid development of character’, in other words.40 One might observe that the term ‘morbid’ registers prominently in Ruskin’s famous definition of the pathetic fallacy, his name for the poetic attribution of (human) life to inanimate (non-human) objects: ‘the main point I insist upon respecting the pathetic fallacy,—that so far as it is a fallacy, it is always the sign of a morbid state of mind, and comparatively of a weak one.’41 A similar criticism of melancholic, enervated, self-enclosed, emotionally excessive minds finds its way into Maudsley’s Body and Will (1883), in the final chapter most notably, where he launches a critique of the principles of the aesthetic movement, associated with writers such as Walter Pater and Charles Algernon Swinburne. What Maudsley especially dislikes is their idea of art for art’s sake, an unhealthy, emasculated and, indeed, culturally pathological outgrowth of the sort of mid-Victorian morbid sensibility Ruskin had in mind. As Gowan Dawson puts it, ‘For Maudsley, the production of aesthetic literature became itself a manifest symptom of a specific form of hysterical hyperaesthesia, which was spread further by the widespread consumption of these contagious texts amongst reading audiences susceptible to degenerative diseases.’42 Certain aesthetic modes, and certain ways of justifying the ends of art, thus became pathological symptoms of European civilisation itself. This was tied into wider narratives of modernity’s decline and degeneration, in which psychiatry was linked discursively and rhetorically to imperial crisis, homophobia, Darwinian biology, and even energy physics in the form of the second law of thermodynamics. If the destination of some of these concerns over the role of art, literature, poetry, feeling, emotional responsiveness, and so on, was the fragmented, self-conscious literary moment of high modernism, that should not prevent us from recognising their distinctively Victorian reach and register. Anxieties over the impact of artistic and literary culture were being voiced in the embodied terms of psychological aesthetics long before Freudian psychoanalytical models. Mid-century science, and mental science, proved to be especially attuned to literary processes and the psychology of reading. Whether many nineteenth-century readers lived up to the therapeutic ideal set out in Mill’s Autobiography is perhaps doubtful, but his narrative articulates a post-Romantic vision of poetry as an aesthetic bridge between the senses and reason that was also endorsed by empiricist post-Kantian thinkers such as Alexander Bain. The major shift from the metaphysical explanation of art to the multiple material systems that embody responsiveness – the senses, the nervous system, the gesturing body – inaugurate new ways of encountering traditional questions about the value and good of artistic works and the feelings they produce.

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John Carey’s narrative of our contemporary aesthetic situation, itself a mildly pessimistic critique in places, leaves out this significant part of the history of British thinking about art. In our present culture, the Victorians retain a considerable hold over us – we remain in thrall to their tastes, codes and imaginative literature, which television and film popularly adapt and reimagine.43 This mirror may be judged a way of recalling lost cultural coherence; none the less, for better or worse, we do put the Victorians to work in order to imagine ourselves. Putting them to work in a slightly different way, perhaps, by opening a dialogue with the period’s sometimes hidden aesthetic models – with its subtle conceptual links between art, the imagination, psychological attention, the labour and pleasure of reading, mental crisis and recovery – would historically enrich any current medical humanities research predicated on determining the relationship between the ends of aesthetics and particular embodied subjects.

Further Reading John Carey, What Good Are the Arts? (London: Faber and Faber, 2005). Nicholas Dames, The Physiology of the Novel: Reading, Neural Science, and the Form of Victorian Fiction (Oxford: Oxford University Press, 2007). Philip Davis, Reading and the Reader: The Literary Agenda (Oxford: Oxford University Press, 2013). Francis Galton, Hereditary Genius: An Inquiry into its Laws and Consequences, 2nd edn (London: Macmillan and Co., 1892). Henry Maudsley, Natural Causes and Supernatural Seemings (London: Kegan Paul, Trench & Co., 1886). John Stuart Mill, Autobiography, ed. John Robson (Harmondsworth: Penguin, 1989).

Notes 1. John Carey, What Good Are the Arts? (London: Faber and Faber, 2005), p. 166. 2. ‘In Memory of W. B. Yeats’ (1939), the Auden poem from which the phrase comes, is widely seen as the locus classicus of the idea of poetry’s uselessness, naming art’s exemption from worldly consequence and political or ethical efficacy. Even if that commits a misreading of Auden’s poem, the line itself divines a sense of division between an aesthetic domain of poetry and the concrete causal circumstances that shape other forms of life and action. (A further possibility is the idea that poetry calls nothingness into being, positively, as it were, since, as Angela Leighton says of Auden’s grammatical ambiguity, ‘ “nothing” shades into a subject, and happens.’ See Leighton, On Form: Poetry, Aestheticism, and the Legacy of a Word [Oxford: Oxford University Press, 2007], pp. 145–6.) 3. Carey, What Good Are the Arts?, pp. 167–8. 4. Blake Morrison, ‘A Lesson with the Art Master’, The Guardian, 11 June 2005. 5. Carey, What Good Are the Arts?, p. 201. There are, of course, different forms of reading. The model that Carey has in view here is solo, private, silent, interiorised. The normalisation of this practice has its own history, one that takes root in Victorian culture in an era of cheapened print and an expanding literate population, though it is possible to overstate the extent to which reading aloud declined in modernity. Walter Ong fashions just this sort of

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linear, binary-laden macro-history in Orality and Literacy, where he claims that ‘In manuscript culture and hence in early print culture, reading had tended to be a social activity, one person reading to others in a group,’ whereas, later, solo silent reading developed in tandem with ‘the sense of personal privacy that marks modern society’. See Walter Ong, Orality and Literacy: The Technologizing of the Word (London: Methuen, 1982), pp. 130–1. A subtler picture would take account of multiple coexisting reading practices. Alberto Manguel, for instance, finds evidence of silent reading in the ancient world in the second chapter of his A History of Reading (London: HarperCollins, 1996). See also Jennifer Richards and Richard Wistreich, ‘The Anatomy of the Renaissance Voice’, in this volume, pp. 276–93. This incorporates not only the history of the sociopolitical opening in which literature comes into being, but also the greater theoretical question of how the literary is configured – that is to say, instituted – in terms of value. See Jacques Derrida, ‘This Strange Institution Called Literature’, in Derek Attridge (ed.), Acts of Literature (New York: Routledge, 1992), pp. 33–75. Also relevant is the practical domain in which the question of the social value of the humanities in general may be conceived and addressed; see, for instance, Stefan Collini’s What Are Universities For? (London: Penguin, 2012) and Jonathan Bate’s edited volume The Public Value of the Humanities (London and New York: Bloomsbury, 2011). Notable examples include the Reader Organisation, a ‘charitable social enterprise’ based in Liverpool, though with activity in other regions of England and Wales, which promotes a model of shared reading in groups to enhance self-esteem and wellbeing ( (accessed 31 May 2015)). Similar kinds of aims lie behind the Reading Agency, a London-based literacy charity, though its model of bibliotherapy stresses in particular the ‘reading journey’ of children and young people. Its mission statement draws explicitly on the cognitive benefits of reading: ‘Reading is more important to children’s cognitive development than their parents’ level of education or social class’ ( (accessed 31 May 2015)). Both initiatives have grown up over the last fifteen years. Academic research projects on the arts and mental health are a notable feature of this changed landscape; see, for example, the Madness and Literature Network ( (accessed 31 May 2015)), which aims to explore the benefits of literature to mental health services and the education of health professionals. Carey, What Good Are the Arts?, p. 14. Carolyn Burdett, ‘Introduction: Psychology/Aesthetics in the Nineteenth Century’, 19: Interdisciplinary Studies in the Nineteenth Century 12 (2011), para. 3 (accessed 16 July 2015). See Rosemary Ashton, The German Idea: Four English Writers and the Reception of German Thought, 1800-1860 (Cambridge: Cambridge University Press, 1980). John Stuart Mill, Autobiography, ed. John Robson (Harmondsworth: Penguin, 1989). Chapter 5, ‘A Crisis in My Mental History’, pp. 111–44, recounts Mill’s experience of ‘dejection’, or depression, and his self-reliant recovery via a regime of literary and poetic reading. Ibid., pp. 111–12. ‘His life seemed to constitute a single large project, in which every, or almost every, activity or enterprise served to advance the utilitarian political agenda. . . . The young Mill’s mind was a psychology built around a single priority, namely, the organizing end of the utilitarian political platform.’ Elijah Millgram, ‘Mill’s Incubus’, in Ben Eggleston, Dale Miller and David Weinstein (eds), John Stuart Mill and the Art of Life (New York: Oxford University Press, 2011), p. 173.

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14. William A. Cohen, Embodied: Victorian Literature and the Senses (Minneapolis: University of Minnesota Press, 2009), p. 7. 15. Mill, Autobiography, p. 112. 16. Samuel Taylor Coleridge, ‘Dejection: An Ode’ (1802), lines 21–4, in The Major Works, ed. H. J. Jackson (Oxford: Oxford University Press, 2008), pp. 114–18. Mill quotes these lines in full to endorse their accurate rendering of depression in Chapter 5 of the Autobiography. 17. Mill, Autobiography, p. 116. 18. Ibid., pp. 116–17. 19. William Shakespeare, Macbeth, V, iii, 40–56. 20. John Plotz, ‘Mediated Involvement: John Stuart Mill’s Anti-Social Sociability’, in Rachel Ablow (ed.), The Feeling of Reading: Affective Experience and Victorian Literature (Ann Arbor: University of Michigan Press, 2010), p. 78. 21. Mill, Autobiography, p. 113. 22. Ibid., p. 121. 23. As William Cohen puts it, ‘An overemphasis on the mind, he suggests, is a pathological condition remedied by recourse to the body; the cultivation of feelings, a marginally embodied experience, is a physic necessitated by the insufficiency of reason’. Cohen, Embodied, p. 7. 24. See Rick Rylance, Victorian Psychology and British Culture, 1830-1880 (Oxford: Oxford University Press, 2000). 25. Alexander Bain, John Stuart Mill: A Criticism with Personal Reflections (London: Longmans, Green, and Co., 1882), p. 38. 26. See Cairns Craig, ‘Coleridge, Hume, and the Chains of the Romantic Imagination’, in Leith Davis, Ian Duncan and Janet Sorensen (eds), Scotland and the Borders of Romanticism (Cambridge: Cambridge University Press, 2004), pp. 20–38. 27. Bain, John Stuart Mill, pp. 38–44. 28. Charlotte Brontë, Jane Eyre, ed. Michael Mason (London: Penguin, 1996), p. 17. 29. Charles Dickens, David Copperfield, ed. Andrew Sanders (Oxford: Oxford University Press, 2008), p. 41. 30. See Nicholas Dames, The Physiology of the Novel: Reading, Neural Science, and the Form of Victorian Fiction (Oxford: Oxford University Press, 2007). Dames examines these issues in rich detail, though without a particular stress on mental health and rather by attending to the physiological theories that underpinned the Victorian’s understanding of mental attention during the embodied act of reading. A ‘cognitive turn’ in literary studies and in the humanities more generally has also taken an interest in how reading is accomplished by the mind and body in concert. See Lisa Zunshine (ed.), The Oxford Handbook of Cognitive Literary Studies (New York: Oxford University Press, 2015). 31. Henry Maudsley, Natural Causes and Supernatural Seemings (London: Kegan Paul, Trench & Co., 1886), p. 149. 32. Ibid., p. 159. 33. Alfred Tennyson, In Memoriam (1850), 46, lines 1–4. 34. Francis Galton, Hereditary Genius: An Inquiry into its Laws and Consequences, 2nd edn (London: Macmillan and Co., 1892), pp. ix–x. 35. Ibid., p. 220. 36. John Ruskin, The Library Edition of the Works of John Ruskin, ed. E. T. Cook and Alexander Wedderburn (London: George Allen, 1903–12), vol. 5, p. 333. 37. Maudsley, Natural Causes and Supernatural Seemings, p. 224.

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38. Ruskin’s account appears in Fors Clavigera, Letter 88, February 1880, written, as it happens, on his birthday. See Ruskin, The Library Edition of the Works of John Ruskin, 29.381–2. Maudsley quotes Ruskin’s passage, approvingly and to commend his ability to retain an observant perspective on his morbid temper. See Natural Causes and Supernatural Seemings, pp. 224–5. On the basis of ‘pathobiography’, a term that happens to have been coined by Maudsley himself, the psychiatrist Dr Max Harper has diagnosed Ruskin’s condition as delirium with episodic psychosis and manic depression with evidence of paranoid delusion – ‘schizo-affective disorder’, which is, according to Harper, more likely than paranoid schizophrenia, as some assume; see Tim Hilton, Ruskin: The Later Years (New Haven, CT: Yale University Press, 2002), p. xix. The very question of the legitimacy of pathobiography is one that my argument here wishes to raise, however. 39. Maudsley, Natural Causes and Supernatural Seemings, p. 230. 40. Ibid. 41. Ruskin, The Library Edition of the Works of John Ruskin, vol. 5, p. 218. Ruskin’s discussion of the pathetic fallacy takes place in the third volume of Modern Painters (1856). 42. Gowan Dawson, Darwin, Literature, and Victorian Respectability (Cambridge: Cambridge University Press, 2007), p. 213. 43. Philip Davis, a pioneer of the aforementioned Reader Organisation and an academic literary critic, examines the ongoing value of this period’s literature in particular in Why Victorian Literature Still Matters (Oxford: Blackwell, 2008) and addresses health and literacy in Reading and the Reader: The Literary Agenda (Oxford: Oxford University Press, 2013). The intersection of these two interests in Davis’s work might be regarded as itself illustrative rather than just accidental.

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25 APHASIC MODERNISM: LANGUAGES FOR ILLNESS FROM A CONFUSION OF TONGUES Laura Salisbury

Introduction n the late 1940s, the physician Théophile Alajouanine wrote an essay about a ‘rare group’ of people who had been left with the condition of aphasia following strokes or other cerebral ‘accidents’. Rare because they had all been professional artists prior to their illness, these patients were particularly useful to their doctor because they offered the intriguing possibility of studying the effect of aphasia – the loss or disturbance of the ability to use language intentionally – on aesthetic representation. The literary author Alajouanine treated was later revealed to be Valéry Larbaud, whose right-sided hemiplegia and aphasia had left him at first with an unusual lexical speech automatism, ‘Bonsoir, les choses d’ici-bas’ (‘Farewell, things down below’), which emerged whenever he tried to speak. Alajouanine both participated in and tracked the author’s recovery, noting that Larbaud went on to regain some of his linguistic ability; still, his ‘persistent trouble of synthetic construction’ remained unimproved and this, Alajouanine observed, disarticulated his ability as a writer. Although aphasia did not alter the work of the painter, the author became unable to use the tools of language propositionally, or to form an expression of his conscious intentions. The conclusion Alajouanine drew from this was stark: ‘the aphasic patient, with his involuntary use of ready-made sentences unadapted to what he wants to express, shows in some way a negative picture of literary art.’1 Alajouanine’s model was not in itself original. Instead, he was building on the insights of the neurologist John Hughlings Jackson, who, in the 1870s, suggested that aphasia should not be understood as a form of wordlessness; it is, more properly, a form of propositional speechlessness. True speech, according to Hughlings Jackson, demands more than the uttering of words in which each lexical unit signifies independently; it demands the use of words that exist in contextual relationships, that are modified by one another, and that come together to form a ‘proposition’. As can be seen from Larbaud’s melancholy speech automatism, ‘the speechless man is not wordless,’2 but, as Hughlings Jackson notes, ‘phrases, which have a propositional structure, have in the mouths of speechless patients . . . no propositional function.’3 Alajouanine

I

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did go on to add a revealing qualifier to his negative assessment of the relationship between aphasia and literary language, however: aphasia only forbade Larbaud’s ‘literary production’ because it disarticulated ‘the one he was used to for he did not employ that conventional agrammatism of some of the young literary schools’.4 Presumably, Alajouanine is implying that Larbaud never had been, so could not make himself into, a Joyce (whose Ulysses he nevertheless translated), or a Surrealist, or a Dadaist. Although it was pathology rather than radical aesthetics that ‘converted that delicate artist and subtle grammarian into an agrammatist’,5 for Alajouanine the implication remains clear that the loss or strategic forgetting of the power to use language propositionally is the loss of what is ‘proper’ to literary art. It is worth noting that Alajouanine was being less than original in subtly comparing symptoms of aphasia with the ‘agrammatism of some of the young literary schools’. Indeed, he repeats a discourse prevalent in the late nineteenth century that sought to align neurologically disturbed language with the aesthetic disruptions of various literary modernisms and proto-modernisms.6 It is also worth flagging the fact that Larbaud was not so easily distanced from the modernist tradition of formal experimentation, even if he never used ‘agrammatism’ in any significant way. But what is more significant about Alajouanine’s analysis is its suggestively limited conception of what counts as poetic language, if ‘agrammatism’ is necessarily its opposite, and ‘delicacy’ and ‘subtlety’ are prioritised. For so much modernism of the first half of the twentieth century precisely plays with the possibility of automatic linguistic constructions, compulsive utterances, or with meanings structured through aleatory combinations of words rather than the formation of propositional units. Such an aesthetic finds its point of condensation in Surrealism, or in the interest in invoking and manipulating the sensuous matter of language divorced from semantic content of Dada. The ‘involuntary use of ready-made sentences unadapted to what he wants to express’ may have been a disruption to what is proper to art for Alajouanine, but for the artists of Dada ‘readymades’ are key aesthetic devices; its poets are insistent on the use of words detached from the clear expression of propositional meaning and semantic content. In this chapter, I want build on the link that Alajouanine dismissively intuits between literary modernism and the disordered speech of aphasia that came to discursive visibility at the same historical moment.7 For just as aphasiology began to understand non-propositional utterances as part of what is proper to human expression, as their disruptive intrusions rendered what normally goes unnoticed visible, literary modernism suggested both lexicons and formal linguistic constructions that tested the limits of the idea that language was the expression of an intending mind imagined as coherent and present to itself. I have explored elsewhere the historical and discursive conditions that link the emergence of neurological theories of language and literary modernism,8 but the aim of this chapter is different. Here, I am seeking to use the formal resemblances between aphasic disturbances and modernist writing that cut the cords of secure intention and bend an ear to the materiality of language, to explore what explicitly ‘disordered’ representation might offer to an emergent discipline of critical medical humanities. By turning to the historical emergence of understandings

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of disordered expression and to new aesthetic and philosophical modes insistent on capturing a sense of the human as inextricably embodied – bound to what is beyond and below the limits of the rational, intending mind – I want to ask critical questions of the dehistoricised and oddly conservative accounts of language that have tended to dominate in medical humanities. Firstly, though, some caveats: this chapter should not be understood as an attempt to romanticise the painful experience of aphasia or to claim that aphasic utterances should be assimilated into the category of literary language, though there are certainly writers who have used their aphasic experience as a prompt to poetry, or have been inspired to find poetry in the aphasic utterances of others.9 Nor is it an attempt to prioritise the linguistic over other modes of representation, even as its focus necessarily risks repeating the overstatement of the importance of language in the work of medical humanities from the 1970s to the present.10 Instead, this chapter builds on the important critical questioning of the centrality of particular forms of language and narrative to medical humanities,11 without giving up on language’s resources or reframing illness as a state of exception beyond the linguistic. As Anne Whitehead and Angela Woods have noted,12 if medical humanities has its own primal scene, it is in the idea of there being a struggle within the medical encounter to find a language with the capacity to speak to and for illness. In 1957, psychoanalyst Michael Balint famously described a ‘dangerous confusion of tongues’ that occurs when doctors and patients speak, with ‘each party talking in a language not understood and apparently not understandable by the other’.13 As Brian Hurwitz and Victoria Bates have detailed in this volume, the most significant response to this ‘confusion of tongues’ has been an assertion of the importance of narrative as a mode that can focus on and describe the value of the subjective experience of illness to the clinical encounter. Hurwitz and Bates note that this turn to narrative can usefully be understood as part of a more general intellectual mood in the latter half of the twentieth century, with sociology, anthropology, literary studies and historiography all affirming that objective accounts of phenomena must be understood as shot through with interests and expressions of power and analysed as stories constructed according to specific forms.14 Subjective narratives of individuals and groups that frequently run counter to hegemonic accounts are thus elevated as ways of accessing material that dominant discourses tend to overwrite. But this turn to story, to the subjective, might also be seen as a flowering of the famous ‘inward turn’ of aesthetic and philosophical modernism, as it emerged in the late nineteenth and early twentieth centuries. Modernism’s emphasis on the subjective, and particularly on the experience of the world filtered through an individual mind that we find in psychoanalysis and phenomenology as much as in James Joyce, had already insisted on tracking the vagaries of perception rather than the so-called ‘realism’ of an objective view. Noting this point of contact raises an intriguing question, though: if the value of narrative lies precisely in tracing the unexpected contours of subjective experience, why imagine that that experience could or should have the broadly ‘realist’ shape of linearity, coherence and closure that has been the focus of the dominant accounts of narrative in medical humanities?

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This chapter explores the possibility that instead of bringing patients and doctors back into the fold of linear narrative, or even and more broadly back to forms of propositional language that might rework experience into a more easily communicable shape, insights about a language of and for illness might emerge from its ‘disorder’ – from an analysis of language already subject, in a clinical sense, to the disruptions of representation that are the putative bedfellows of illness in general. It attempts to gain traction on the question of how language and illness might be linked by first tracing how the linguistic resources invoked by the modernist writer Virginia Woolf for illness are in suggestive historical and structural contact with the neurologically disordered language that Hughlings Jackson marks as non-propositional. The chapter moves on to describe how the modernist philosophical discipline of phenomenology – particularly the work of Maurice Merleau-Ponty – uses aphasia, as a specific disorder of representation, to offer key insights into the complex embodiment of the self that necessarily moves subjectivity beyond the confines of an intending mind. These reflections are not attempts to suggest how a language of and for illness should appear; they simply work to explore how language might yet be capable, for certain people and at certain times, of communicating and forming contingent clusters of meaning at the limits of what are imagined as the norms of subjective experience and representation.

Disinclined for Prose Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights go down, the undiscovered countries that are then disclosed . . . what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his ‘Rinse the mouth – rinse the mouth’ with the greeting of the Deity stooping from the floor of heaven to welcome us – when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.15 Why is the experience of illness so absent from the canon of literature, asks Virginia Woolf in 1926? In place of the blankness and the seeming numbing ubiquity of illness, she lets her prose expand. As we can see above, she ratchets up rhetorical incongruity until her syntax becomes vertiginous. Indeed, she begins ‘On Being Ill’ by fabricating a comic texture in the hyperbolic warp and bathetic weft of a prose style that likens mild influenza to the exploits of Victorian adventure fiction, the dentist’s chair to Greek myth. Here, of course, the travel to ‘undiscovered countries’ takes place within the self, though as with any travel there are difficulties of translation. Woolf indeed tells us that ‘to hinder the description of illness, there is a poverty of the language’ that emerges in relation to pain: ‘The merest schoolgirl, when she falls in love, has Shakespeare or

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Keats to speak her mind for her; but let a sufferer try to describe the pain in his head to a doctor and language at once runs dry.’16 In The Body in Pain (1985), Elaine Scarry famously uses this insight to stage her argument that pain is radically resistant to language: ‘Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.’17 Scarry argues that language, as an articulation of a describing and naming mind, can no longer map on to the flinty and resistant shards of the experiencing body. The subject is thus taken back to the experience of infancy, with infancy here linked to its etymological root of ‘not speaking’. Joanna Bourke has recently troubled this position by suggesting that pain is more usefully thought of as a ‘type of event’ that ‘always belongs to an individual life; it is part of her life-story’, even if it might pull that notion of story beyond usual narrative conventions.18 As such, it does and must have a relationship to representation. But Woolf herself is ahead of Scarry’s argument, for the essay insists on bringing language and the pained embodied experience of illness together. It does this by explicitly offering an account of language that is not simply a medium through which to express the troubled complexity of mind/body relationships found in illness. Instead, ‘On Being Ill’ imagines a new language scored and scuffed into visibility by illness. It imagines words that could figure as stigmata of the embodiment of a mind that, in health, works so smoothly, so transparently, that it frequently cannot be seen or experienced at all. In ‘On Being Ill’, Woolf is explicitly critical of literature’s emphasis on the mind that seeks to imagine itself as distinct from the stubborn materiality of the body: literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear . . . On the contrary, the very opposite is true. All day, all night the body intervenes; blunts or sharpens, colours or discolours, turns to wax in the warmth of June, hardens to tallow in the murk of February. The creature within can only gaze through the pane – smudged or rosy; it cannot separate off from the body . . . People write always of the doings of the mind; the thoughts that come to it; its noble plans; how the mind has civilised the universe. They show it ignoring the body in the philosopher’s turret; or kicking the body like an old leather football.19 This is hardly non-dualist thinking, though it does articulate the tortured impossibility of sustaining any of the advantages of a Cartesian position in the face of illness. There is no clean detachment of mind from suffering matter here – no representing mind that sits behind the pane, or the pain. Woolf posits instead a disarticulated Cartesianism that leads to a wish to detach from the body. ‘This monster, this body, this miracle, its pain, will soon make us taper into mysticism,’ she notes;20 and yet mental flight is precisely what illness will not allow. Woolf’s own prose is, of course, no stranger to a detachment from realist notions of a stolid material world. In its use of free indirect style and stream of consciousness her prose can be so limpid and transparent, so cerebrally skimming, as it dips in and out of minds in ways that seem momentarily to dissolve the corporeal boundaries between self and other, psyche and material world.

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But here, she claims the stony recalcitrance of matter as a linguistic tool. For the ill person, the essay insists: There is nothing ready made for him. He is forced to coin words himself, and, taking his pain in one hand and a lump of pure sound in another (as perhaps people in Babel did in the beginning), so to crush them together that a brand new word in the end drops out.21 The reference to Babel makes it clear that this is not an attempt to repair the fragmentation of language that precedes Genesis’s account of the ‘confusion of tongues’, after which the relationship between linguistic sound and meaning becomes as painfully riven as that of the soul watching its body from the ‘philosopher’s turret’. Instead, this is a language that insists on and emerges from the feeling of division. Illness crushes what feels separate painfully together – psyche and soma, idea and matter, meaning and sound – while refusing their ecstatic unification by insisting on the untranscendable, painful sensation of their separation. The phrases illness coins demand to be minted anew, stamped into forms that may circulate but have not yet attained the colourless transparency of money divested of its materiality, its metallic substance. Now, as will be clear, Woolf is writing about influenza, headache, toothache, and perhaps obliquely and defensively about psychic pain; she is not writing about aphasia. Aphasia is not a condition that is physically painful (as the brain has no pain receptors), though the frustration of not being able reliably to say what one means or mean what one says might cause intense mental frustration and pain. And yet, Woolf’s perception of the kind of language that illness and pain precipitate – a ‘new language . . . more primitive, more sensual, more obscene’ than what is usually let in by domineering ‘intelligence’22 – can be instructively linked, both in the essay and outside of it, to a modernist aesthetic that seeks to align itself with the material recalcitrance of words, and to an account emergent from aphasiology at around the same moment that insists that the propositional speech and writing required for linear narrative do not tell the whole story of language. As L. S. Jacyna has convincingly argued in his history of the birth of aphasiology in the latter half of the nineteenth century, it is precisely the Cartesian idea of a mind/body dualism, and language’s specific role in that model as a mental attribute that marks the presence of an immaterial soul (and thus hives off the rational human from the animal), that neurological accounts of language as emergent from localised areas within the material brain came to disturb.23 As Woolf’s occasional doctor, Henry Head, affirmed in his monumental book Aphasia and Kindred Disorders of Speech (also published in 1926), the highly implicated, so easily disruptable relationships between speech, writing, thought, intention and motor action that are suddenly rendered visible in brain damage ‘form a fascinating example of the interaction of body and mind, one, moreover, capable of experimental investigation’.24 Thus, even though ‘On Being Ill’ is not advocating an aphasic poetics, it does call for a language freighted with the contingency of a material body from which the mind cannot float free and that aphasiology brings to historical and discursive visibility. The language it calls for

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is one stamped from the matter of suffering corporeality and material dysfunction – matter inflected with the subjectivity of consciousness and with affect – the language, then, of an unrelentingly embodied mind. This language that emerges from, and nails the representing subject to, the embodied experience of illness may be linked to a relatively new understanding of language’s neurological embodiment; at the level of the essay, though, it is more assertively tied to specific forms of linguistic estrangement and ‘confused tongues’ with which Woolf, as a writer, was concerned. ‘Incomprehensibility has an enormous power over us in illness,’ she suggests: In health, meaning has encroached upon sound. Our intelligence domineers over our senses. But in illness, with the police off duty, we creep beneath some obscure poem by Mallarmé . . . and the words give out their scent and distil their flavour, and then, if at last we grasp the meaning, it is all the richer for having come to us sensually first, by way of the palate and the nostrils, like some queer odour.25 The ‘lump of pure sound’ referred to earlier in the essay seems now to be a specific reference to Stéphane Mallarmé’s obscurity in ‘Sonnet en yx’, with its first line ‘Ses purs ongles très haut’ that pushes at the boundaries of logical sense while teasing the reader towards the sensuously concrete. For ‘Ses purs ongles’ – ‘Her pure nails’ – is homophonic with ‘C’est pur son’, and thus aims itself towards a possibility that ‘it is pure sound’. This, in turn, accords with Mallarmé’s proto-modernist aim articulated in ‘Crisis in Poetry’ (1886–95) of ‘transposing the symphony to the book’, of finding the ‘essence and softness’, the scent and flavour, in Woolf’s terms, of words as bits of matter that no longer function simply as ciphers for ideas.26 In the 1880s, Hughlings Jackson was also showing, through an analysis of the linguistic formations retained in aphasia, that language is made up of elements not all of which subserve cognitive intentions. He suggested that propositional or referential speech is under conscious control, but non-propositional speech such as swearing, rotelearnt articulations like nursery rhymes and automatic counting, or certain idiomatic phrases are laid down in the phylogenically earlier, less evolutionarily developed areas of the brain and emerge without having to lean on conscious intentions. As a consequence, when higher areas of brain function are damaged to the degree that they fail to inhibit the behaviour of the lower levels, the result can be the uncontrolled production of utterances that have little function in terms of the articulation of rationality or the intentional. These non-propositional utterances may ‘consist of articulate words’, but ‘they are generally used in talking, not to express ideas, but to make up by vigour in delivery what is wanting in precision of expression. They may, indeed, be considered as phrases that emotion has filched from the intellect.’27 For Hughlings Jackson, then, these utterances ‘take low rank in language, little above that of other bodily starts’;28 they are semi-automatic – something like linguistic readymades. But for Mallarmé, the possibility of taking language back to the affectively charged, embodied materiality of words rather than propositions is a vital elevation of the ‘lower ranks’ of language. Woolf seems even clearer: when the police of ‘intelligence’ have been called off duty in

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illness, an embodied mind might yet find expressive language in the phrases emotion has ‘filched’ from the intellect. For both writers, this language does not form a ‘negative picture of literary art’; rather, it becomes art’s most proper achievement. None of this is to say that most modernist literature (and Woolf’s writing in particular) is constructed using ‘automatic’ methods. But in a way that can be linked to the neuroscience of language that allows particular qualities of speech and writing to become newly visible, much modernist literature challenges the assumption that language must remain the peaceable servant of a securely intending mind that forms clear propositions and projects that could be bound to a coherent narrative arc. ‘On Being Ill’, even though an essay, retains contact with this aesthetic, as it is certainly hard to skim for logical content. Its statements about illness are no respectors of the logic of non-contradiction; indeed, as with the novel Woolf imagines being devoted to influenza, the essay lacks ‘plot’ (broadly understood). But then, Woolf tells us that illness pulls away from extended narrative or from story: ‘illness makes us disinclined for the long campaigns that prose exacts.’29 True to its subject of illness, the essay is held together not by narrative or argument but by the fabric of its prosody, by a tissue of metaphors that shuttle and repeat, making links that are as poetic as they are logically propositional: the sensuousness of flowers, ‘childish outspokenness’, proneness, windows that divide and yet connect inside and outside. Indeed, it becomes clear that instead of linguistic representation being simply destroyed, illness takes its place in Woolf’s project as a tool that might help to craft a new language – a language that moves beyond and behind the aesthetic representations of a literary tradition that have so frequently, by her account, flattened out the texture of life as it is lived. ‘On Being Ill’ thus takes its place alongside the woman’s writing of Woolf’s ‘A Room of One’s Own’ (1928), capable of breaking both the sentence and the sequence in its registration of everyday subjective experience.30 It takes its place alongside ‘Modern Fiction’ (1919), which insists that ‘[l]ife is not a series of gig lamps symmetrically arranged . . . Is it not the task of the novelist to convey this varying, this unknown and uncircumscribed spirit, whatever aberration or complexity it may display?’31 Illness is also a tool that breaks sentence and sequence – indeed, that might use broken sentence and sequence in the name of making a claim on life as it is experienced. ‘Look within and life, it seems, is very far from being “like this”,’ she asserts.32 Like what? Like a novel in which experience can be written and shaped under the intending eye of a master plot.

Disordered Language In ‘On Being Ill’, Woolf speaks of how the patient, the ‘deserter’ of the ‘army of the upright’,33 is suddenly thrown into a prone position. She takes her eyes off the road ahead and looks upwards at what normally washes into the distance. First she is enraptured; soon, though, she retreats from the ravening sky, shocked that this making and unmaking of the natural world has been ‘going on all the time without our knowing it’.34 Woolf emphasises the importance of finding a language capable of registering

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the disarticulation of intending consciousness as illness throws the virile subject from its normalcy (etymologically, its verticality, its right-angled position); but, as we have seen, this aesthetic mode is also underpinned by a claim about the nature of the life as it is lived. As numerous critics have noted, this ambition brings Woolf’s work into contact with a philosophy emerging at the same historical moment as her modernism – the philosophy of phenomenology that has recently made a significant impact on a medical humanities aiming to move beyond an emphasis on reworking the subjective experience of illness into broadly realist narrative shapes. Both Woolf’s literary modernism and Maurice Merleau-Ponty’s phenomenology perform an inward turn from the putative realism of external or pre-existing forms towards the unexpected texture of subjective and profoundly embodied experience. Both also use illness as a mode of weakening our absorption in an idea of the world in order to render explicit the unpredictable perceptual experiences that form an embodied understanding of being-in-theworld. But, suggestively, both also lean on the emergent determination that language is a formation of a material body. Indeed, in Merleau-Ponty’s case, he explicitly formulates his account of subjectivity through the insights that brain damage, and aphasia particularly, offer on the relationship between consciousness and embodiment. Recent work in medical humanities has used phenomenology to suggest that an emphasis on narrative and language has occluded the complexity, historical specificity and diversity of embodied experience by forming accounts of illness into particular preconceived shapes, but I want to press on the under-examined fact that MerleauPonty specifically uses aphasia and disorders of representation to structure his account of being-in-the-world. By using Merleau-Ponty’s turn to aphasia to demonstrate how language and representation subtend embodied subjectivity, I want to suggest that a language determined to remain conscious of its materiality may yet be capable of following the contours and vicissitudes of contingent embodied experience. Bringing Merleau-Ponty’s phenomenology together with Woolf’s determination to track the unexpected shapes of embodied experience linguistically, this chapter will suggest that language may yet have recesses and resources that could both offer a communicable shape to the experience of illness, and render visible its work on subjectivity as part of what is proper to human life. In Phenomenology of Perception (1945), Merleau-Ponty builds on Edmund Husserl’s method of phenomenological reduction, which brackets off the question of what existence objects might have in the exterior world (alongside metaphysical and ontological questions), to concentrate on how phenomena appear to consciousness. But Merleau-Ponty extends reduction beyond consciousness into an account of embodiment; indeed, he precisely uses embodiment as a mode of phenomenological reduction because it loosens our sense of being immersed in an idea of the world: [Phenomenological] Reflection does not withdraw from the world towards the unity of consciousness as the world’s basis; . . . it slackens the intentional threads which attach us to the world, and thus brings them to our notice; it alone is consciousness of the world because it reveals the world as strange and paradoxical.35

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As Havi Carel has highlighted, though, Merleau-Ponty does not just turn to the experience of the body;36 rather, he turns specifically to illness to perform phenomenology’s reduction, its parallax effect of revelation. For it is precisely in illness that the ‘strange and paradoxical’ qualities of subjectivity obtrude sufficiently from the occulting transparency of so-called healthy embodied experience that they become perceptible as phenomena. Merleau-Ponty thus argues that those threads that invisibly tie our sense of the body as a compliant object to the body as the expression of a coherently positioned and unified intending subject, are crucially loosened in the experience of illness: the life of consciousness – cognitive life, the life of desire or perceptual life – is subtended by an ‘intentional arc’ which projects round about us our past, our future, our human setting, our physical, ideological and moral situation . . . It is this intentional arc which brings about the unity of the senses, of intelligence, of sensibility and motility. And it is this which ‘goes limp’ in illness.37 In illness, the body as smooth expression of the intentional subject is rendered out of phase with a body as unwieldy object – a body subjected to interruptions in the unity of its ‘intentional arc’. As Carel puts it, ‘the body becomes an obstacle and a threat, instead of my home, a place I inhabit and whose ways are predictable. A change to one’s body is a change to one’s being-in-the-world.’38 Health may detach the self from perceptions of embodiment as attention is directed towards fluent intentional interactions with the world, but, as Drew Leder notes, the body becomes distanced from itself in illness too, though in a way that has philosophical value: ‘The body is no longer alien-as-forgotten, but precisely as-remembered, a sharp searing presence threatening the self.’39 So, as in Woolf’s essay, in illness the body suddenly becomes an unsteerable tank in which a consciousness finds itself helplessly, haplessly enclosed. In illness, MerleauPonty indeed finds an angle to round on the Cartesian dualism in which the body is imagined as ‘the sum of its parts with no interior, and the soul . . . wholly present to itself without distance’.40 For illness precisely refutes the idea that the subject might be able to exist in a world from which it has the structural capacity to separate itself. And embodiment, once attended to, renders explicit the processes through which the subject comes to a sense of itself according to experience that emerges from the chiasmic intertwining of matter and idea, the natural and cultural, the individual and the social. As Merleau-Ponty puts it, there is no transhistorical or essential body (or mind, for that matter); rather, the body is rooted in nature at the very moment when it is transformed by cultural influences, never hermetically sealed and never left behind. Whether it is a question of another’s body or my own, I have no means of knowing the human body other than that of living it, which means taking up on my own account the drama which is being played out, and losing myself in it.41 But if the ‘drama which is being played out’ is suddenly wrenched from what the subject feels able to ‘take up’, what is left of this experience of the world that resolutely resists being reduced to the thought of the world?

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In order to try to outline some answers to this question, I want to press on the specific qualities of the neurological illnesses on which Merleau-Ponty’s analysis so heavily leans, exploring their relevance to the question of the formation of meaningful experience for the subject. For when Merleau-Ponty turns to illness, he does so through the work of neurologist Kurt Goldstein and Gestalt psychologist Adhémar Gelb, who were treating patients together in Frankfurt just after the Great War. He concentrates particularly on their descriptions of Johann Schneider – a twenty-four-year-old soldier who, in 1915, had suffered two wounds to the back of his head that had penetrated the occipital lobes of the brain. From these injuries he developed an extraordinary set of symptoms and compensations.42 Merleau-Ponty describes Schneider as experiencing a kind of ‘psychic blindness’: he is unable to perform abstract movements provoked by intention rather than pursued automatically through habit; he has a profound disarticulation of his body image; he has language disturbances (certain forms of aphasia and alexia – difficulties with speech, reading and writing), and a generalised inability to form sense impressions into meaningful patterns or Gestalts. Gestalt psychology of the 1920s and 1930s was characterised by the urge towards the expression of wholeness in human personality, experience and abstract thought, and the perception of the external world as a symmetrical articulation of this internal holism. Goldstein translated this holism into a theory of brain function, noting from his observation and treatment of wounded soldiers that the underlying and universal disturbance in all brain injury is a defect in the ‘figure ground function’ – an ability to pick out and configure pattern and meaning, Gestalts, from a background sea of phenomena.43 Extrapolating from this position, and from the neurological compensations made by rerouting function through undamaged areas of the plastic brain observed in patients, Goldstein argues that the functioning brain, like the mind, is immanently organised to order the chaos of its experience into wholes. Goldstein, whose particular specialism was in aphasia, goes on to assert that it is language, linked to a more broadly representational capacity, that enables this patterning and synthesis of experience that permeates the totality of mental functioning. Because Merleau-Ponty, following Goldstein, also refuses any dualism of mind and body, subject and object, representation – thought and language, in this case – emerges as part of the totality of the organism’s experience, its body image, and its imbrication within the world of sensation. Representation indeed has a particular significance because it enables the subject’s intersections and interactions with the phenomenal world to become meaningful. Extrapolating from Goldstein’s account of the complex losses of orientation towards the world experienced in aphasic disturbance, MerleauPonty asserts that language does not express thoughts that somehow pre-exist or outlast the experience of material embodiment; rather, language ‘brings home to us the enigmatic nature of our own body’44 – a body and mind that are achieved rather than discovered, in the sense that they are always implicated in a process of creating and interpreting meaning. Using terms drawn from neurological paradigms, he writes that the body, like language itself, is not a collection of particles, each one remaining in itself, nor yet a network of processes defined once and for all – it is not where it is, nor what it is – since we

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see it secreting in itself a ‘significance’ that comes to it from nowhere, projecting that significance on to its material surrounding, and communicating it to other embodied subjects.45 It is precisely through the power of representation, then, that the embodied subject understands itself as orientated towards a world of possibility and engagement from which it draws and to which it imbues significance. Aphasia, as a disruption of this representational capacity, thus claims a significant place in Merleau-Ponty’s phenomenology. Representation enables an embodied subjectivity to experience itself as meaningful, while symbolic capacity becomes an expression of material, embodied functioning. In Merleau-Ponty’s terms: ‘Bodily experience forces us to acknowledge an imposition of meaning which is not the work of a universal constituting consciousness.’46 And what aphasia does, through deficit, is to render this embodied process of meaning-making perceptible to consciousness. What Merleau-Ponty finds in Goldstein’s work, then, is ‘an existential theory of aphasia, that is, a theory which treats thought and objective language as two manifestations of that fundamental activity whereby man projects himself towards a “world” ’.47 From Goldstein, he also draws the idea that the healthy individual has holistic flexibility subtended by a representational capacity – a capacity that enables the perception and representation of certain meaningful patterns in relation to which experience can be orientated. The brain-damaged person, however, does not. But Goldstein argues that the brain-damaged person does not simply accept their losses passively. Instead, the embodied subject responds to the existential psychic trauma of brain damage – the bodily alienation, the altered experience of space and time, the frustration of bodily intentionality, the social changes and challenges to self-identity and integrity, which are, of course, ontological features of all illness, but seem condensed and perhaps particularly concentrated in the experience of brain damage that results in aphasia – by naturally, unconsciously compensating and reorienting neurological and then mental functioning towards new modes of holistic organisation.48 But maybe this suggestion that legible patterns are what our neurobiology is always striving for, this suggestion that informs Goldstein’s and Merleau-Ponty’s thought, but that also links to many of the shapes of mind implicit within medical humanities, should give us pause. As Hurwitz and Bates show in this volume, writers such as Arthur Frank have posited that illness disrupts a person’s capacity to order their experience linguistically, turning them into a ‘narrative wreck’ that requires newly patterned, linear and therapeutic stories capable of reorienting experience towards meaning.49 Angela Woods has convincingly argued, however, for the need to think in more detail about how a concentration on particular kinds of narrative – particularly linear narratives that stress deep psychological continuities across time and an expressive, confessional ‘I’ – might privilege and render problematically universal modes of subjectivity and self-expression that are, in fact, culturally and historically contingent.50 For the reification of certain modes of shaping experience, such as Frank’s ‘quest narrative’, might resolutely fail to help some people to map some of the unexpected topographies of

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embodied experience that can be encountered in illness: the possibility of irreparable psychic discontinuity experienced in the absolute contingency of certain forms of brain damage;51 the common reality of chronic conditions that resist narratives of subjective overcoming; the inevitability of death, which can be seized as a pole of orientation but can never be a part of a subject’s own story.52 For Merleau-Ponty, a certain ‘being towards’ meaning-making also seems proper to the human, but, unlike Goldstein, who suggested that pattern was immanent within the world, Merleau-Ponty suggests that order is made through lived experience; it is thus shaped by specific cultural forms into which the embodied subject is thrown and which it also works to construct. Linear narrative may thus only ever have been one of the configurations of language that have both used and produced our embodied subjectivity. Representation and language are proper to the human, but the insights into the qualities and capacities aphasia throws into relief demonstrates that representation is not absolutely delimited by the capacity to propositionise, to order rationally or coherently. As Woods notes, ‘narrative does not have a monopoly on expressivity,’53 and she carefully tracks modes of meaning-making available for the experience of illness that are non-narrative in focus. What is perhaps more problematic, however, is that these modes seem sometimes to be collapsed into a move beyond language itself. Woods notes that there are many parts of subjective experience that ‘cannot be spoken’, inviting those in the medical humanities ‘to embrace silence as a part of life that is open to contingency and randomness, but also ecstasy and intensity; to resist the impulse to mistake narrative for life’.54 But it might also be important not to mistake narrative for language. For language, even as it might orientate itself towards the propositionality that subtends the very possibility of making a narrative, also consists of other modes of more explicitly embodied expressivity, of meaning-making. Idiomatic phatic communication, for example, emerges semi-automatically and signifies neither more nor less than the desire to be in the other’s regard, to inhabit a social relationship. Ronald Schleifer has also noted continuities between poetic language and the modes of expression found in Tourette’s syndrome that suggest neurobiological points of contact between the language associated with subcortical regions of the brain (and with aphasic speech automatisms), emotions and the body’s motor activities. Indeed, he traces out powerful connections between linguistic and motor activity – between the meanings and materialities of discourse exhibited in the meaningless rhymes, rhythms, and invectives of Tourette’s – [that] manifest . . . the fact that the sources and resources of poetry are seated deeply within our primate brains.55 Are the links made by rhyme and rhythm necessarily ‘meaningless’, though? For poetry seems precisely to use a link heard by the ear or felt in the central nervous system, which can become part of how the world as a whole is experienced as patterned, pleasing, graspable as a pole of subjective orientation, as a way of prompting connections between linguistic elements that are not straightforwardly propositional but that can then also become available to conscious reflection.

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Carel follows Merleau-Ponty assiduously in asserting that illness is not merely a dysfunction of a body subsystem but a systematic transformation of the way the body experiences, reacts, and performs tasks as a whole. The change in illness is not local but global; it is not external but at the core of the self.56 But she also follows Merleau-Ponty in his emphasis on deficit and the implied ‘natural attitude’ of normalcy that the distancing effect of illness suddenly illuminates. She writes, surely correctly, that ‘illness is perceived as a capricious interruption, bringing about a radical loss of certainty, loss of control, and a new understanding of the world as unpredictable’.57 Illness, particularly of a life-threatening or life-limiting kind, is experienced here as a kind of extraordinary rendition. But even if we accept this, its implications, once unpicked, are remarkable, for it imagines a transparent and spontaneous experience of fulfilled intentions – a good and natural embodiment – that illness comes to disturb, but that also masks the phenomenal reality of the world from us.58 It seems to me, however, that the ‘natural attitude’ of transparency and spontaneity surely never quite manages the hegemony over phenomenal experience that MerleauPonty and Carel imply. Part of the comedy, but also part of the value, of Woolf’s ‘On Being Ill’ is that the ordinariness of going to the dentist can become a revelation; ‘I am in bed with influenza’ can be transformative as ‘the whole landscape of life lies remote and fair.’59 Show me the day that does not have its capricious interruptions, its losses of control, its unpredictability in the stubbed toe, the sneeze, the missed step, the missed turning, the wrong thing said (or heard), the room too hot or cold, the itch, the chronic pain, the knowledge of deaths more or less shattering to the subject, the broken hammer. Are these experiences different in kind to illness? Are they beyond meaning, even though they may imply radically different configurations of meaning? Or is illness more of a limit case, an inescapable intensification of those experiences in which the world suddenly feels unready-to-hand (to use Heidegger’s famous phrase) that make up the fabric of life? It is worth noting that Woolf mentions what we would now refer to as her mental illness only in an oblique fashion in her essay, perhaps desublimating that which had the capacity to creep over the totality of her life into conditions like influenza or headache that tend to pass in and out. Nevertheless, the possibility that all life has capricious interruption and a radical loss of certainty stitched into it that attends serious illness, including, of course, mental illness, remains at the core of Woolf’s radical modernist proposition. For she starts as she proceeds, ‘[c]onsidering how common illness is’,60 in a way that sutures illness into the aesthetic demands modernism brought to the fore. In ‘Modern Fiction’ she indeed stakes a claim for a modernist writing that might look into what is common, look inside, and yet find ‘no plot, no comedy, no tragedy, no love or catastrophe in the accepted style, and perhaps not a single button sewn on as the Bond Street tailors would have it’61 – just subjective experience shot through with the contingencies, disruptions, and complexities of the everyday. ‘On Being Ill’ thus contains its own proleptic reply to Frank’s injunction that the quest narrative should reshape the ‘chaos narratives’ that are ‘sucked into the undertow of illness and

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the disasters that attend it’ – that which presents as an ‘anti-narrative of time without sequence’.62 Both using and ironising the tendency towards hyperbole and excess that seeps into illness and indeed all accounts of life strung to this intense pitch, the notion that illness might be formed as a quest, with ‘undiscovered countries . . . disclosed’ that are different in kind to the everyday experience of the dentist,63 becomes Woolf’s prompt to bathos. And in this exaltation and bathos, we might come to feel how illness is both the instigator of revelation and the normal run of things; illness marks the extraordinary as a quality furled inside the very fabric of the common. For Woolf, the language that might register these unexpected formations of the everyday takes the shape of an ill body. She indeed imagines a language subject to disordering, divested of the even transparency that would cause it to disappear behind ideas of the world and an intentional consciousness that meets no material resistance. The ‘disorder’ that is always and everywhere immanent in language and embodiment thus frays into consciousness; language is no longer the tool of a rational mind that stitches things together as the Bond Street tailors would have them. For as MerleauPonty implies, though seems reticent to show, language has the capacity to tauten and slacken its intentional threads in the same way that the intentional arc is loosened and restrung in embodiment; indeed, it does so as part of the fragile formation of this arc, and it does so as a response to the phenomenological texture of experience for an embodied, finite subject capable of suffering and of grasping its own vulnerability. A language capable of tracking the experience of illness might then usefully focus its attention on modes that follow this tightening and loosening of embodied intentionality – modes that use as resources for expression the language that cleaves to the embodiment of mind. This does not require a movement beyond language; instead, it invites a burrowing into the resistant matter of language via modes that came to scientific, philosophical and aesthetic visibility in modernity – modes that dig into the recesses of non-propositional formulations or sheer away from linear coherence. Paying attention to a historical moment that began to insist that being true to experience meant recognising how life might be woven together in ways that are fragile and contingent, always subject to unravelling and respooling, brings incapacity, interruption and lassitude – it brings illness – back into what is proper to human life. As language shows itself as both less and more than what it imagined itself to be, an interdisciplinary and critical medical humanities that tracks how cultures form a sense of the capacities and limits of the human across medical, philosophical and aesthetic discourses might thus be of use both to patients and to clinicians in showing how a confusion of tongues might not be a place into which humans fall; rather, it is a place and time in which we might understand ourselves to live.

Acknowledgements This chapter emerges from work undertaken on the Arts and Humanities Research Council (AHRC)-funded network, Modernism, Medicine and the Embodied Mind: Investigating Disorders of the Self, Principal Investigator Ulrika Maude, Co-Investigator Elizabeth Barry, Co-I Laura Salisbury (2015–16). I am grateful to

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my co-investigators for the discussions that have formed the core of this chapter, and to all those who attended Modernism’s Chronic Conditions at the University of Exeter, April 2015.

Further Reading Havi Carel, Illness (London: Routledge, 2013). Havi Carel, ‘Illness, Phenomenology, and Philosophical Method’, Theoretical Medicine and Bioethics 32 (2013), pp. 33–46. Arthur Frank, The Wounded Story-Teller (Chicago: Chicago University Press, 1995). L. S. Jacyna, Lost Words: Narratives of Language and the Brain, 1825–1926 (Princeton: Princeton University Press, 2000). Drew Leder, The Absent Body (Chicago: University of Chicago Press, 1991). Maurice Merleau-Ponty, Phenomenology of Perception, trans. Colin Smith (London: Routledge, 1962). Laura Salisbury, ‘Sounds of Silence: Aphasiology and the Subject of Modernity’, in Laura Salisbury and Andrew Shail (eds), Neurology and Modernity: A Cultural History of Nervous Systems (Basingstoke: Palgrave, 2010), pp. 204–30. Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, Medical Humanities 37 (2011), pp. 73–8. Angela Woods, ‘Beyond the Wounded Story-Teller: Rethinking Narrativity, Illness, and Embodied Self-Experience’, in Havi Carel and Rachel Cooper (eds), Health, Illness and Disease (Newcastle: Acumen, 2012), pp. 113–28. Virginia Woolf, On Being Ill, with Notes from Sick Rooms by Julia Stephen (Ashfield: Paris Press, 2012), pp. 3–4.

Notes 1. Théophile Alajouanine, ‘Aphasia and Artistic Realization’, Brain 79.3 (1948), pp. 229–41 (p. 239). 2. John Hughlings Jackson, ‘On Affections of Speech from Disease of the Brain’ (1), Brain 1 (1878), pp. 304–30 (p. 317). 3. John Hughlings Jackson, ‘On Affections of Speech from Disease of the Brain’ (2), Brain 1 (1879), pp. 203–22 (p. 209). 4. Alajouanine, ‘Aphasia and Artistic Realization’, p. 231. 5. Ibid., p. 231. 6. See, for example, in Jules Renard’s famous journal published in the 1920s, an entry from May 1893 that quotes Bernard Lazare on the symbolism and proto-modernism of Paul Claudel: ‘What is referred to as the genius of Claudel . . . is nothing but aphasia.’ The Journals of Jules Renard, trans. Louise Bogan and Elizabeth Roget (Portland: Tin House Books, 2008), p. 61. 7. See, for example, Friedrich Kittler, Discourse Networks, 1800/1900, trans. Michael Metteer, with Chris Cullens (Stanford: Stanford University Press, 1990), pp. 206–64. 8. See Laura Salisbury, ‘Sounds of Silence: Aphasiology and the Subject of Modernity’, in Laura Salisbury and Andrew Shail (eds), Neurology and Modernity: A Cultural History of Nervous Systems (Basingstoke: Palgrave, 2010), pp. 204–30. See also Laura Salisbury, ‘ “What Is the Word”: Beckett’s Aphasic Modernism’, Journal of Beckett Studies 17 (2008), pp. 80–128.

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9. See, for example, C. K. Stead, The Black River (Auckland: Auckland University Press, 2007); and Philip Gross, Deep Field (Tarset: Bloodaxe Books, 2011). 10. For an illuminating account of this problematic emphasis on language, and language as it is shaped into narrative, see Angela Woods, ‘Beyond the Wounded Story-Teller: Rethinking Narrativity, Illness, and Embodied Self-Experience’, in Havi Carel and Rachel Cooper (eds), Health, Illness and Disease: Philosophical Perspectives (Newcastle: Acumen, 2012), pp. 113–28. 11. See Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, Medical Humanities 37 (2011), pp. 73–8. 12. Anne Whitehead and Angela Woods, ‘Introduction’, in this volume, pp. 2–3. 13. Michael Balint, The Doctor and his Patient (London: Pitman Medical Publishing, [1957] 1968), p. 26. 14. See Brian Hurwitz and Victoria Bates, ‘Narrative, Medicine and the Humanities’, in this volume, pp. 560–4. 15. Virginia Woolf, On Being Ill, with Notes from Sick Rooms by Julia Stephen (Ashfield: Paris Press, 2012), pp. 3–4. 16. Ibid., pp. 6–7. 17. Elaine Scarry, The Body in Pain (Oxford: Oxford University Press, [1985] 1998), p. 4. 18. Joanna Bourke, The Story of Pain: From Prayer to Painkillers (Oxford: Oxford University Press, 2014), p. 5. 19. Woolf, ‘On Being Ill’, pp. 4–5. 20. Ibid., p. 6. 21. Ibid., p. 7. 22. Ibid. 23. L. S. Jacyna, Lost Words: Narratives of Language and the Brain, 1825–1926 (Princeton: Princeton University Press, 2000). 24. Henry Head, Aphasia and Kindred Disorders of Speech, vol. I (Cambridge: Cambridge University Press, 1926), p. 141. 25. Woolf, ‘On Being Ill’, p. 21. 26. Stéphane Mallarmé, ‘Crisis in Poety’, in Vassiliki Kolocotroni, Jane A. Goldman and Olga Taxidou (eds), Modernism: An Anthology of Sources and Documents (Edinburgh: Edinburgh University Press, 1998), pp. 123–7 (p. 127). 27. John Hughlings Jackson, ‘Loss of Speech: Its Association with Valvular Disease of the Heart and with Hemiplegia on the Right Side–Defects of Smell–Defects of Speech in Chorea. – Arterial Lesions in Epilepsy’, in ‘Reprint of Some of Dr Hughlings Jackson’s Papers on the Affections of Speech’, Brain 38 ([1864] 1915), pp. 28–42 (p. 40). 28. John Hughlings Jackson, ‘On Affections of Speech from Disease of the Brain’, in ‘Reprint of Some of Dr Hughlings Jackson’s Papers on the Affections of Speech’, Brain 38 ([1880] 1915), pp. 147–74 (p. 139). 29. Woolf, ‘On Being Ill’, pp. 6, 19. Hurwitz and Bates describe the importance of story to the development of medical humanities in this volume. 30. Virginia Woolf, A Room of One’s Own (Harmondsworth: Penguin, 1945), pp. 90–1. 31. Virginia Woolf, ‘Modern Fiction’, in Kolocotroni et al., Modernism, p. 397. 32. Ibid. 33. Woolf, ‘On Being Ill’, p. 12. 34. Ibid., p. 13.

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35. Maurice Merleau-Ponty, Phenomenology of Perception, trans. Colin Smith (London: Routledge, [1945] 1962), p. xiii. 36. See Havi Carel, Illness: The Cry of the Flesh (London: Routledge, 2013); Carel, ‘Phenomenology and its Application in Medicine’, Theoretical Medicine and Bioethics 32 (2011), pp. 33–46; Carel, ‘Phenomenology as a Resource for Patients’, Journal of the Philosophy of Medicine 37 (2012), pp. 96–113; and Carel, ‘Illness, Phenomenology, and Philosophical Method’, Theoretical Medicine and Bioethics 32 (2013), pp. 345–57. See also Salisbury, ‘Sounds of Silence’, pp. 224–7. 37. Merleau-Ponty, Phenomenology of Perception, p. 136. 38. Carel, Illness, p. 353. 39. Drew Leder, The Absent Body (Chicago: University of Chicago Press, 1991), p. 91. 40. Merleau-Ponty, Phenomenology of Perception, p. 198. 41. Ibid., p. 198. Merleau-Ponty’s position is productively extended in this volume by Jane Macnaughton and Havi Carel, as they work to show that the symptoms of breathlessness cannot simply be described in biomedical terms; instead, they need be read as phenomena ‘pregnant with historical, cultural and existential meanings which are often overlooked in the clinical context’, but which are at the core of how they emerge and become meaningful for patients and clinicians. 42. There have been questions raised about the authenticity of the losses and neurological compensations presented in the ‘Schn.’ case study that suggest that Gelb and Goldstein’s account was a narrative construction, a ‘collaboration’ between doctors and their patients that produced a composite of symptoms, though one created without fraudulent intent. See Georg Goldberg, ‘Goldstein and Gelb’s Case Schn.: A Classic Case in Neuropsychology’, Classic Cases in Neuropsychology, vol. II, in Chris Code, Claus-W. Wallesch, Yves Joanette, André Roch Lecours (eds) (Hove: Psychology Press, 2003), pp. 281–300. 43. Kurt Goldstein, Language and Language Disturbances: Aphasic Symptom Complexes and their Significance for Medicine and Theory of Language (New York: Grune & Stratton, 1948), p. 5. 44. Merleau-Ponty, Phenomenology of Perception, p. 197. 45. Ibid. 46. Ibid., p. 147. 47. Ibid., pp. 190–1. 48. See, for example, Kurt Goldstein, The Organism: A Holistic Approach to Biology Derived from Pathological Data in Man (New York: Zone Books, [1939] 1995). 49. Arthur Frank, The Wounded Story-Teller (Chicago: Chicago University Press, 1995), pp. 53–5. 50. See Woods, ‘The Limits of Narrative’. 51. Catherine Malabou uses the absolute cut in subjective experience produced by some forms of brain damage to critique the insistence on narratives of continuity that mould subjectivity into conventionally recognisable shapes. The New Wounded: From Neurosis to Brain Damage, trans. Steven Miller (New York: Fordham, 2012). 52. It is the purpose of the AHRC-funded network, Modernism, Medicine and the Embodied Mind, to discover whether modernism (in literature, philosophy, theatre, the visual arts and dance) has specific formal and thematic resources that might assist the representation and understanding of disorders of the embodied mind. 53. Woods, ‘Beyond the Wounded Story-Teller’, p. 124.

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54. Ibid., p. 126. Carel also calls for ‘embodied phenomenological research methods’ that imply a movement beyond verbal accounts (‘Phenomenology and its Application in Medicine’, p. 41), temporarily placing to one side the fact that, in Merleau-Ponty’s account, language is an experience of embodiment; indeed, it both produces the representation that enables embodied subjective experience and is the precipitate of that embodied experience. 55. Ronald Schleifer, ‘The Poetics of Tourette’s Syndrome: Language, Neurobiology, and Poetry’, in Chris Eagle (ed.), Literature, Speech Disorders, and Disability: Talking Normal (New York: Routledge, 2014), pp. 137–61 (p. 138). 56. Carel, ‘Phenomenology as a Resource for Patients’, p. 41. 57. Ibid., p. 103. 58. Eran Dorfman states that Merleau-Ponty’s ‘natural attitude’ of normalcy becomes paradoxically both more and less true to the ways things are than the pathological attitude. ‘Normality and Pathology: Towards a Therapeutic Phenomenology’, Journal of the British Society for Phenomenology 36 (2005), pp. 23–38. 59. Woolf, ‘On Being Ill’, p. 8. 60. Ibid., p. 3. 61. Woolf, ‘Modern Fiction’, p. 397. 62. Frank, The Wounded Story-Teller, pp. 115, 98. 63. Woolf, ‘On Being Ill’, p. 3.

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26 TRANS-SPECIES ENTANGLEMENTS: ANIMAL ASSISTANTS IN NARRATIVES ABOUT AUTISM David Herman

Introduction n Rupert Isaacson’s The Horse Boy, a 2009 memoir about Isaacson’s and his spouse’s experiences raising their autistic son, Rowan, Isaacson suggests that Rowan has a special connection with animals. Thus, in his portrayal of an interaction between Rowan and Betsy, the horse Rowan rides on a neighbour’s farm, Isaacson recounts how

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without hesitation, Rowan opened his arms and hugged Betsy’s great brown head, which was hanging low enough for him to reach. Then he gave her a kiss. As he did so, an expression of extraordinary gentleness came over her – a certain softening of the eye, a blissful half-closing of the eyelid with its long black lashes. Something passed between them, some directness of communication that I, a neurotypical human, could never experience. Not this side of the spirit world, anyway.1 Similarly, in Nuala Gardner’s 2007 autism memoir, A Friend like Henry, blurbed as ‘the remarkable true story of an autistic boy and the dog that unlocked his world’, Gardner portrays her autistic son Dale as being especially attuned to animals – in this case, the family’s golden retriever, Henry. Recounting the first time her autistic son Dale encounters a dog, Gardner writes that ‘Dale was focused, switched on to [the dog’s] needs.’2 On the basis of this successful interaction, Gardner and her partner decide to adopt Henry, who proves himself capable of breaking into ‘Daleyworld’ and interrupting the autistic mannerisms that, in Dale’s case, include staring and flapping of the hands.3 In aligning autistic characters with non-human animals in this way, Isaacson’s and Gardner’s memoirs parallel other recent accounts, such as Dawn Prince-Hughes’s Songs of the Gorilla Nation and Temple Grandin’s Animals in Translation, that are premised on the idea that persons on the autistic spectrum and members of other species share a special affinity or bond. In turn, such accounts root themselves in a longer conceptual genealogy – an extensive field of discourses stretching back for millennia – that links animals to persons who embody non-normative traits, dispositions or capacities.

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The present chapter explores how this linkage plays out in narratives that, like Isaacson’s and Gardner’s, cast animals in the role of assistants, recruited for therapeutic purposes as part of a formal or informal treatment protocol for persons with autism. In such narratives, the oppositions human/non-human and able/disabled become intertwined – entangled – in complicated, multi-layered ways. Coming to terms with this complex intertwining or entanglement bears importantly not only on the questions about mind, imagination and affect that are at the heart of the present section of this Companion,4 but also on the larger project of developing a critical medical humanities. In what follows, after situating accounts of animal assistants within a larger tradition of storytelling beyond the human, a tradition encompassing many different kinds of narratives about animals and human–animal interactions, I survey discussions of the definition, history, possible explanatory mechanisms and relative efficacy of animal-assisted interventions for persons with autism, among other target populations. Using Isaacson’s The Horse Boy and Gardner’s A Friend like Henry as primary case studies, I then discuss how an expanded framework for inquiry – one that integrates ideas from trans-species anthropology, critical animal studies, disability studies and narrative theory – brings into view a wider range of issues that are pertinent for the study of stories about animals assisting children diagnosed with autism. In using Gardner’s and Isaacson’s texts to engage with these issues, my overall aim is to show how a ‘narratology beyond the human’ raises productive questions for the critical medical humanities, and vice versa. I close this introductory section with a comment about my title. Drawing on Karen Barad’s work, Des Fitzgerald and Felicity Callard in their chapter use the term entanglement to refer to the ‘awkward sub-disciplinary mixtures of knowledge, material and practice’ that can give rise to modes of inquiry and ways of knowing not associated with any of the constituent disciplines taken individually, prior to their being brought into more or less uneasy relationships with one another via boundary-crossing investigative work. The present chapter pursues the same modus operandi, triangulating multiple frameworks for research around aspects of human–animal relationships that cannot be exhaustively characterised using any one of those frameworks taken alone.5 But I also develop a kind of topographic analysis of layers or levels of entanglement at work in stories about animal assistants, in an effort to capture the multiplex nature of the cross-species relationships at stake. As discussed below, these multi-layered trans-species entanglements stretch from particular human–animal interactions to the larger cultural institutions, discourses and practices by which such interactions are framed – and normalised.

Contextualising Accounts of Animal-assisted Interventions Storytelling Beyond the Human Taking their place within a larger corpus of non-fictional as well as fictional narratives about animals and human–animal relationships, stories about animal assistants

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in therapeutic settings can be situated in the emergent frameworks for research being developed around this extensive corpus of stories. This new work considers how pet memoirs, classic and contemporary accounts by naturalists observing animals in the wild, fictional treatments of animal experiences, film documentaries and other relevant narratives afford space for reconsidering – for critiquing or reaffirming, dismantling or reconstructing – human attitudes, institutions and practices vis-à-vis other kinds of beings in a more-than-human world. In this sense, narratives raise questions about the scope of selfhood not only in the storyworlds associated with individual texts or genres, but also in the cultures in which those texts and genres are embedded, and by which they are animated. At stake are what Eduardo Kohn describes as more or less inclusive ecologies of selves6 – that is, more or less parsimonious or prolific allocations of the possibility for selfhood beyond the human. Some cultures, including those associated with modernity in the West, reveal a fault line between inclusive and restrictive communities or ecologies of selves. Erica Fudge describes as follows the key contradiction arising from this clash of perspectives: We live with animals, we recognise them, we even name some of them, but at the same time we use them as if they were inanimate, as if they were objects. The illogic of this relationship is one that, on a day-to-day basis, we choose to evade, even refuse to acknowledge as present.7 To what extent, and in what specific ways, does this contradiction manifest itself in Gardner’s and Isaacson’s memoirs, among other accounts of the use of animal assistants to treat persons with autism? What are the implications of this antinomy for the project of developing a critical medical humanities? To come to grips with these questions, it is necessary to engage with existing approaches to research on animal assistants in therapeutic contexts, before resituating those approaches in the expanded investigative frame outlined later in this chapter.

Defining Animal-Assisted Interventions (AAI) Some analysts distinguish between animal-assisted activities and animal-assisted therapy. Thus, for Aubrey H. Fine, ‘activities’ are practices in which animals are brought into contact with people ‘for motivational and recreational benefits to enhance quality of life’, whereas ‘therapies’ are goal-oriented interventions ‘delivered by a health or human service professional’ in which ‘an animal meeting specific criteria is an integral part of the treatment process.’8 However, given that there are substantial areas of overlap between these areas of practice, in the present analysis I follow Merope Pavlides and Marguerite E. O’Haire in using the rubric Animal-Assisted Interventions (AAI) as a cover term for all cases where animals are recruited for what are taken to be therapeutic purposes as part of a formal or informal treatment protocol – in this case, for symptoms associated with autism.9

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A Thumbnail History of AAI Gail F. Melson reviews ancient and more recent notions of animals as healers.10 As she notes, a turning-point in the recent history of animal-assisted interventions was the founding of the York Retreat, established in 1792 by William Tuke in association with a Quaker group in England known as the Society of Friends. Tuke believed that as patients cared for small animals, the animals’ dependence would elicit greater self-control and responsibility in the disordered minds of their caretakers. Caring for animals and tending animals would draw patients’ attention outward, away from their own inward distress, toward engagement in the world.11 Subsequent to the founding of the York Retreat, Florence Nightingale, among others, also argued that companion animals could help the sick.12 However, it is psychologist Boris Levinson’s work, starting with his groundbreaking 1961 article on ‘The Dog as a “Co-Therapist” ’, that has perhaps had the most influence on modern-day uses of AAI for psychotherapy and for the treatment of neurodevelopmental disorders such as autism. Recounting an accidental encounter between his dog Jingles and a boy who had recently become his patient, Levinson goes on to identify several potential benefits of using animals in psychotherapeutic contexts. For example, he suggests that including a dog in the initial session can cause disturbed children to open up and, eventually, place more trust in the therapist.13 Further, in confiding to a dog the child can experience, and possibly come to understand, a greater range of emotions than he or she will embrace in other contexts.14 In later work, Levinson outlined further benefits of what he came to call Human/Companion Animal Therapy and, drawing on John Bowlby’s attachment theory and D. W. Winnicott’s concept of ‘transitional objects’, pinpointed mechanisms associated with ontogenetic development as possible explanations of those benefits. Thus Levinson comments on the physical proximity made possible by touching another creature who becomes, in effect, a mother substitute, contact with the adult caregiver having led infants to ‘associate soft, pleasing touch sensations with the availability of security’.15 Relatedly, animals can come to be seen as transitional objects that comfort the infant in lieu of the absent mother, and enable him or her to make the transition from the circumscribed world of the self to the wider world of self–other relationships.16 As Melson notes, despite his cautionary remarks about the need for further studies, in pioneering the field Levinson may have contributed to exaggerated expectations about the efficacy of AAI.17 By the same token, his work raises questions of the sort I turn to next – questions about possible explanatory mechanisms for the benefits ascribed to interventions involving animals.

Proposed Explanatory Mechanisms Like Levinson, Aaron Katcher and Gregory Wilkins suggest that children find speaking with animals less stressful than speaking with humans, and that this aspect of AAI may explain why animals facilitate talk–and promote the therapeutic benefits of

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engaging with others.18 In a later study, Katcher synthesises the Winnicottian idea of animals as transitional objects with Victor Turner’s concept of liminality to propose another account of how AAI achieves therapeutic results. Because animals neither speak nor seek to control children’s behaviour, they can serve as ‘appropriate vehicles for the projection of positive feelings’ that can then be generalised to humans. In turn, ‘the novel and playful ways that social attributes are recombined in the liminal state (generated between people and animals) destabilise ingrained patterns of thinking and permit the learning of new behavior patterns.’19 By contrast, the ‘biophilia hypothesis’ affords an explanation of the benefits ascribed to AAI that foregrounds the domain of phylogenetic evolution over that of ontogenetic development – or, for that matter, the variable experiences of human individuals. In Stephen R. Kellert’s account, the biophilia hypothesis ‘asserts the existence of a biologically based, inherent human need to affiliate with life and lifelike processes’.20 More specifically, the hypothesis suggests that because of the way animals functioned as sentinels who could warn early hominids about potential dangers in their immediate environment, it was evolutionarily advantageous for our species to develop a preference for orienting to other kinds of animals – a preference that, anchored in humans’ phylogenetic history, also plays itself out in their ontogenetic development. Melson, similarly, draws on the biophilia hypothesis to explain the frequency of animals in narratives targeted at younger audiences, as well as the importance animals have in children’s developmental processes more generally.21 She then extrapolates from this account to propose a biophilia-based explanation of the benefits ascribed to AAI: Biophilia addresses the calm that distressed and out-of-control children report as well as the focused attention seen in children with emotional and cognitive impairments. Watching animals at peace may create a coupling of decreased arousal with sustained attention and alertness, opening the troubled child to new possibilities of learning and growth.22 Critics of the biophilia hypothesis, however, have argued that its very wide scope makes it virtually non-falsifiable; thus Yannick Joye and Andreas de Block assert that because statements of the hypothesis lack explicit criteria for what counts as life-like, ‘almost any possible affective attitude towards life-like entities could . . . be accommodated within a biophilic framework. Biophilia thereby seems to become almost entirely immune to possible counterexamples.’23 Joye and de Block also critique appeals to the biophilia hypothesis to account for the benefits attributed to AAI in particular, suggesting that ‘the bulk of the “philia” in “biophilia” is the result of culture and (social) learning’ rather than in-built predispositions acquired via evolutionary processes.24

Assessments of Relative Efficacy Many studies of AAI assert that such human–animal interactions carry effects beneficial for human participants, both in general and also in treatment protocols for persons with autism or with intellectual disabilities. But what is the evidentiary basis for claims concerning the efficacy of AAI?

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On the basis of their meta-analysis of previously published studies, Janelle Nimer and Brad Lundahl suggest that overall AAI ‘was associated with moderate effect sizes in improving outcomes in four areas: Autism-spectrum symptoms, medical difficulties, behavioral problems, and emotional well-being’.25 Marguerite E. O’Haire presents a more thoroughgoing critique of research on AAI. She argues that ‘the research base for AAI is . . . scattered, with few high-quality studies, many methodological weaknesses [e.g., the lack of longitudinal data accumulated through follow-up studies and the absence of appropriate control conditions], and limited replication.’26 In another highly critical study, focusing on dolphin-assisted therapy in particular, Lori Marino and Scott O. Lilienfeld cite the problem of non-specific effects – that is, placebo and novelty effects, with the latter effect involving an initial positive outcome caused simply by a change in routine, rather than anything specifically related to the new treatment regime.27 Crucially, O’Haire draws a contrast between anecdotal evidence in support of AAI and what she characterises as more robust evidence based on statistically significant differences in the outcomes of treatment protocols that involve AAI versus those that do not.28 O’Haire does not consider, however, what might account for the power and persuasiveness of the anecdotal in this context. Why do anecdotes – stories – about the positive effects of animal assistants for persons with autism find purchase in the discourses circulating within the culture? Further, what distinguishes an anecdote from a (potentially generalisable) case study, and how can use of the term ‘anecdote’ itself lead to the trivialisation and neglect of narratives that deserve closer scrutiny? How might accumulating individual stories about human–animal relationships in general, and animal assistants in particular, result in different understandings of the multilayered trans-species entanglements that are the focus of the present chapter – for example, by suggesting new questions for research that cut across established academic disciplines? To explore these and other issues, I return now to my two main case studies, Isaacson’s The Horse Boy and Gardner’s A Friend Like Henry, using these example texts to demonstrate the need for more cross-disciplinary work on narratives about animal helpers.

Expanding the Investigative Frame To take stock of my discussion thus far, and to outline my strategy for engaging with Isaacson’s and Gardner’s texts, I distinguish among four layers or levels of entanglement in narratives about AAI for persons with autism – with these levels being interconnected in turn: 1. Cross-species entanglements arising from the particular human–animal interactions that feature in narratives about AAI. 2. Further trans-species entanglements stemming from the situation of those local interactions within a broader set of cultural practices that cut across species lines. 3. A third level of entanglement that, emerging from level (2) and linking up with a range of discourses about animals and human–animal relationships, manifests

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itself in narratives in which the oppositions human/non-human and ability/disability become intertwined. 4. And finally, another, ‘meta’ level of entanglement – or rather, a layer threaded through all the others. This fourth level arises from the interaction between the analyst’s own frames of reference and the human–non-human relationships featuring in the narratives under study.29 Having focused up to now on questions about local interactions between humans and non-humans (entanglements at level 1), in what follows I engage with the broader contexts for such interactions and relationships (levels 2–4).

Multi-species Ethnography/Trans-species Anthropology Having emerged at the intersection of environmental studies, science and technology studies, and animal studies, multi-species ethnography, as S. Eben Kirksey and Stefan Helmreich describe it, focuses on ‘contact zones where lines separating nature from culture have broken down, where encounters between Homo sapiens and other beings generate mutual ecologies and coproduced niches’.30 Kohn’s trans-species anthropology likewise seeks to capture not just human attitudes toward non-human animals but also the webs of interaction that give rise to forms of intersubjectivity cutting across the human–non-human boundary. Kohn, too, seeks to develop an ‘analytical framework that goes beyond a focus on how humans represent animals to an appreciation for our everyday interactions with these creatures and the new spaces of possibility such interactions can create’.31 When it comes to AAI in general, and Gardner’s and Isaacson’s portrayal of animal assistants in particular, this work allows important questions to be formulated; the questions are situated at the boundary between the first and second levels of entanglement enumerated above. • How have understandings of animals as assistants changed over time? • How do the relationships emerging from AAI relate to other sorts of co-produced niches, whether in the West or elsewhere in the world? • What is the best way to describe the ecologies of selves to which AAI give rise? What positions and relationships are entailed by, or responsible for, these multispecies constellations of agents? • Relatedly, through what procedures do participants in AAI make ascriptions of subjective experiences across the human–non-human boundary? Neither Isaacson nor Gardner situates their accounts of AAI in the wider history of using animals as helpers and healers, but one strategy for opening up both texts to the lines of inquiry being pursued in multi-species ethnography would be to conduct a diachronic, cross-generic study of relevant narratives. Although it lies beyond the scope of the present chapter (but see my discussion of disability studies below), the

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aim of such an analysis would be to compare the animal assistants featured in these and other autism memoirs with non-human agents portrayed in a variety of myths, in news reports dating from different eras, and in fictional and non-fictional accounts of animal heroes (and, for that matter, animal opponents). A focus on ecologies of selves and on ascriptions of subjective experiences across the species boundary can likewise suggest how accounts of localised human–animal interactions both reflect and help shape broader cultural assumptions, institutions and practices. It is debatable whether an extended, transhuman community of selves in fact emerges in narratives like Isaacson’s and Gardner’s; in some contexts, at least, the various non-human agents involved remain occluded, cut off from the modes of relationality in the context of which the notion of a self comes to have meaning in the first place. Further, these occlusions tap into, and help reinforce, the understandings of autistic human selves that are also projected by the stories in question. In both texts, the boundaries of the community of selves shift and fluctuate; over the course of each narrative, the autistic protagonists, as well as the animals they interact with, move from a position outside the community to a position within it – in large part as a result of these same human–animal encounters. Thus, when Henry first appears in Gardner’s memoir, the dog’s subjectivity remains gapped out; he comes across less as an autonomous locus of experience than as part of the general background in which Dale seeks to acquire agential selfhood, his own reasons for acting remaining opaque until Henry comes on the scene. In such contexts Gardner effectively instrumentalises Henry; indeed, she explicitly characterises him as a ‘living educational resource’,32 recounting how Dale learns about the concept of hunger through Henry’s need for regular feeding, and comes to feel less aversion toward having his hair brushed by seeing how much Henry enjoys being groomed.33 Yet Henry eventually achieves the status of a (transhuman) family member, whose interventions in Dale’s life complement – and enhance – Dale’s own growing capacity for legible forms of agency. Henry becomes a kind of proxy self when Gardner and her spouse ventriloquise Henry’s voice for the purpose of communicating with Dale, for example. He enters even more fully into the community of selves by virtue of his repeated interactions with Dale – and also when he shows himself able to ‘understand that I was not myself’ during Gardner’s difficult second pregnancy.34 Similarly, in The Horse Boy, the interactions between Rowan and Betsy, the neighbour’s horse, enable both of these agents-in-the-making to enter the community of selves from a position outside that community. Isaacson, for the most part, elides non-human phenomenology when recounting Rowan’s interactions with the horses and other animals he encounters; however, in reporting his son’s first meeting with Betsy, Isaacson does ascribe to her complex dispositions and traits (‘she was on the quiet side but was famously grumpy towards the other horses, over whom she was the unquestioned boss’), including an awareness that Rowan is special and that he needs to be protected. Rowan’s specialness derives, in turn, from his ability to form a direct, quasi-mystical bond with Betsy: she dipped her head to Rowan’s soft, writhing form, so close and so dangerously exposed to her hammer-hard hooves. Dipped her head, and mouthed with her lips.

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The sign of equine submission . . . In all the years I had been training horses, I had never seen this happen. My son had some kind of direct line to the horse.35 Further, Isaacson remarks that ‘I had to find a way into his world, into his mind. I found it, amazingly, through a horse, Betsy.’36 Thus, like Dale’s interactions with Henry, Rowan’s interactions with Betsy result in the assimilation of both a human and a non-human agent into the community of selves, which in these stories of AAI only sometimes cuts across species lines. Indeed, as I discuss in my next subsection, the membership criteria for inclusion in such transhuman communities remain unstable, because of contradictory attitudes toward animals – attitudes that constitute an important research focus in the field of critical animal studies.

Critical Animal Studies Cross-disciplinary conversations being conducted under the heading of critical animal studies also bear importantly on the multi-layered trans-species entanglements evident in texts such as Gardner’s and Isaacson’s. One relevant strand of work in this domain involves a rethinking of the scope of the concept ‘person’, along with a wider re-examination of value hierarchies premised on the centrality of the human in light of recent research on language and tool use, cognition, and complexity of cultural organisation.37 Other pertinent scholarship includes discussions of anthropomorphism that have produced distinctions between naïve versus critical or heuristic styles of anthropomorphic thinking;38 work in cognitive science extending and refining Darwin’s emphasis on the continuity between human and non-human minds;39 research in animal geography, sociology and other fields studying the relationships between (actual as well imaginary) places reserved for humans and those assigned to non-humans;40 and critiques of attempts to use rights-based discourse to promote better treatment of non-human animals, in favour of ‘a bioegalitarian turn encouraging us to relate to animals as animals ourselves’.41 This work again raises important questions about accounts of AAI in narratives like Gardner’s and Isaacson’s: • Do such accounts, by focusing on the potential benefits of human–animal interactions for humans, challenge or reinforce ideas of human exceptionalism? • How do anthropomorphic projections, whether they are uncritical or heuristic, shape accounts of animals as assistants? • Relatedly, how might narratives of this sort be used to explore potential commonalities and contrasts in the ways human and non-human beings experience the world, and how might wider awareness of these commonalities and contrasts in turn affect the design and implementation of AAI? • Where do animal assistants fit within animal geographies, with their (culture-specific) divisions between human and non-human places, and might stories about animal assistants reshape those geographies? This work provides a platform for investigating how narratives like Gardner’s and Isaacson’s raise questions concerning the experiences of animal helpers, apart from

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the assistive functions attributed to them. For example, practical guidelines for animal welfare underscore the necessity of attending to species-specific capabilities, dispositions and preferences in therapeutic contexts – for instance, dogs’ olfactory acuity or their need for a place they can retreat to after extended periods of contact with humans.42 By contrast, although Gardner does recount Henry’s health problems late in his life, neither she nor Isaacson registers the distinctive capabilities and preferences of the animal agents whose individual experiences are subordinated under their role as assistants to human protagonists. This omission, and the underlying cultural contradiction it reflects, contribute to Henry’s and Betsy’s oscillating status in the two memoirs. Whereas the animals sometimes function as subjects in their own right, as members of an expanded community or ecology of selves, in other contexts they remain instrumentalised as objects, defined not through their interconnectedness with but their usefulness to the human selves who rely on them. Critical animal studies, then, focuses on the unstable position of animals within the ecology of selves. Disability studies, for its part, suggests how humans who have specific physical impairments, which are coded as dis-abling, can be slotted into the category of the non-human, itself interpreted as the less-than-human.

Disability studies As Dan Goodley notes, the concept of disability lends itself to both inclusive and exclusive interpretations.43 In one sense, disability implies a kind of marginalisation, or exclusion, caused by more or less widely shared interpretations (or stigmatisations) of physical impairments that dis-able persons from full participation in the social order. But the explosion of diagnostic categories, along with higher rates of diagnosis, has vastly increased the number of persons considered to be disabled. In a similar vein, Mary Midgley comments on inclusive and exclusive uses of the term animal, as evidenced in locutions such as We humans are animals too versus Those criminals acted like animals. Hence there is an isomorphism between discourse about disability and discourse about animals. In both domains, two countervailing logics operate simultaneously: a logic of kinship and inclusion, and a logic of difference and exclusion.44 Not only are the discourses of animality and disability isomorphic, or governed by parallel logics; what is more, they have historically been and continue to be mapped on to one another. Thus, in his genealogy of concepts of intellectual disability, Goodey notes how those concepts have centred around issues of species identity from the start. As Goodey discusses, some theories of disability bound up with medieval and early modern religious thought were devil-based; these theories held that the devil would sometimes substitute for a human infant a child belonging to a different species.45 Further, from around 1200 onwards, intellectual ability, and in particular the ability to engage in logical reasoning and abstraction, came to be seen as the defining trait of the human species.46 Here Goodey refers to discourses informed by the cosmological model, or cultural ontology, that became known as the Great Chain of Being.47 Stretching back to Aristotle’s Scale of Nature, this linear, hierarchical model projected a horizontal

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axis of morphological difference on to a vertical or hierarchical model of ontological status, with the different sorts of beings located at different levels of the model (for example, God, angels, male humans, female humans, non-human animals, inanimate matter) being assigned different degrees of moral worth. This model’s mapping of species characteristics on to degrees of ability and ontological status is reversible; hence if a being otherwise identifiable as human proves deficient in the forms of reasoning deemed to be threshold criteria for species identity, then the absence of those reasoning abilities in itself constitutes grounds for denying that being membership in the category of the human.48 This complex, centuries-old entanglement of understandings of species difference with judgements about intellectual (dis)ability structures Gardner’s and Isaacson’s accounts.49 Initially, at least, the narratives frame Dale’s and Rowan’s non-normative responses to verbal and other cues as irrational, or motivated by no reconstructible reason for acting, and this irrationality in turn leads to their expulsion from the category of the human. Thus, in reporting one of Dale’s early tantrums, Gardner recounts how ‘I had no alternative but to carry this kicking, screaming, seemingly alien being the whole mile back to the flat, blood running down my face where he had managed to dig his nails in.’50 Similarly, Isaacson reports his feeling ‘as if I had somehow cursed this child by giving him my faulty genes, condemned him to a lifetime of living as an alien because of me’.51 Yet Gardner and Isaacson both claim for their autistic sons forms of intelligence that fall outside the narrow band of reasoning abilities considered to be prototypically human, and conversely integrate animal assistants into an expanded community of selves. In this way, their accounts simultaneously broaden the scope of the cognitive abilities that define the human and blur the line that, in hierarchical models of species difference, separates human and non-human ways of being. Ideas from narratology and narrative theory can further illuminate these aspects of my two case studies – and what they suggest about the multi-layered trans-species entanglements at work in stories concerned with AAI.

Narratology/Narrative Theory In a previous study on Storytelling and the Sciences of Mind, I propose a two-sided approach to narrative worldmaking, considering storyworlds, or the worlds projected via storytelling practices, as both a result of and a support for efforts to make sense of experience.52 On the one hand, interpreters of narratives (in whatever medium) engage with narrative under its profile as a target of interpretation. On the other hand, narratives can be used to make sense of experience itself, and in particular the conduct of persons. When it comes to using narrative as a means for sense-making or an instrument of mind, stories serve to link modes of conduct to reasons for acting that might not otherwise be evident. Further, at a more macro or suprapersonal level, stories can be used to intervene in a field of discourses or a constellation of ideological positions.

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The study of narratives about animal assistants can thus be recast in terms of questions concerning character-pertinent aspects of storyworlds; the key issue is how cross-species character relationships shape the interpretation and use of narrative worlds. With respect to narrative interpretation, Ralf Schneider’s work on characters sheds light on this issue and the layers of entanglement at stake.53 Schneider suggests that engaging with (human) characters in stories often involves categorisation, whereby pre-existing models of persons are brought to bear, in a top-down fashion, on agents in narrative worlds – as when I interpret a particular character as a boastful coward, a loyal friend or a compulsive gambler. In turn, the hierarchical understanding of species difference that can be traced back to Aristotle’s Scale of Nature and the Great Chain of Being constitutes an important source domain for models of persons. Encapsulating the species-blending characterisation strategies used by Isaacson and Gardner, Figures 26.1 and 26.2 illustrate how those strategies invite specific kinds of categorisation processes. Figure 26.1 suggests how, in attributing forms of disability to their human protagonists, these autism memoirs effectively recategorise the affected humans (at least in some contexts) as non-human. Figure 26.2 illustrates the converse process, whereby ability-demonstrating non-human characters such as Betsy and Henry are, if not completely recategorised as human, at least admitted into an expanded community of selves, as part of a transhuman family. However, another passage from Isaacson, more fully elaborated in a sequence from the film version of The Horse Boy (2009), suggests how cross-species character relationships in narratives can also have an impact on the process of storying the world – that is, on the use of narratives as a resource for sense-making. Here Isaacson’s account suggests how narratives can be leveraged to reframe dominant understandings of the ability/disability distinction vis-à-vis models of species difference. In the memoir, Isaacson recounts his interview with the developmental psychologist and autism expert Simon Baron-Cohen, whom Isaacson quotes as saying ‘perhaps in the future . . . it is going

Figure 26.1 Characterisation as Categorisation: Human Disability as Species Transformation. Author’s own figure.

Figure 26.2 Characterisation as Categorisation: Non-human Ability as Species Transformation. Author’s own figure.

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Figure 26.3 Characterisation as Recategorisation: Disability as Ability. Author’s own figure. to be increasingly controversial whether autism is something that needs to be cured or not. Perhaps it is more a personality type.’54 In the film adaptation, this interview is part of a longer sequence that begins by re-emphasising Rowan’s special rapport with animals and highlighting his uncanny ability to group his animal toys by species. Then Baron-Cohen appears, asserting that traits associated with autism, such as the ability to focus intensely on a particular topic or task, may have contributed to the evolutionary success of the human species.55 Here, in a first step, Baron-Cohen recasts disability as a kind of ability, and then in a second step moves away from any hierarchical model of species difference and instead embraces a horizontal model, in which humans as well as non-humans are subject to evolutionary processes that shape their phylogenetic heritage. Figure 26.3 captures how, in part because of their place within a larger narrative sequence, Baron-Cohen’s comments reconfigure understandings of autism, and ideas about disability, vis-à-vis questions of species identity. In highlighting how engaging with narratives involves an interplay between the processes of worlding the story and storying the world, Figures 26.1 to 26.3 suggest the relevance of scholarship on narrative for the fourth layer of trans-species entanglements. On the one hand, prior models of species identity and human–animal relationships – models circulating more or less pervasively in the culture(s) of which I am a member – guide my interpretation of stories about animal assistants and persons with autism. On the other hand, stories of this sort can, in turn, reshape the models in question; telling different kinds of narratives about humans’ relationships with nonhuman others has the potential to alter understandings of our place within a morethan-human world, and of what constitutes or defines the human. Thus, by oscillating between a focus on stories as a target of interpretation and an emphasis on narrative as a resource for sense-making, it is possible to bring within the scope of analysis the way an analyst’s own frames of reference interact with human–non-human relationships in narratives like Gardner’s and Isaacson’s.

Narratology Beyond the Human, Critical Medical Humanities, and the Transhuman Self This chapter has outlined only some of the available directions for inquiry when it comes to research on multi-layered trans-species entanglements in narratives like A Friend like Henry and The Horse Boy. Each of these investigative routes deserves

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further exploration, and other routes need to be opened up as well: for example, through analysing video-recorded interactions between persons with intellectual disabilities and animal assistants; studying blogs and other online testimonials by parents, facilitators, or former recipients of AAI; or examining how animals feature in the genograms (diagrams of family relationships) and accompanying narratives produced in the context of family therapy.56 In short, an important task for a narratology beyond the human is that of assembling an inclusive corpus of narratives, told in a variety of settings and media, about human–non-human entanglements in contexts of AAI. The goal is to move from viewing these stories as isolated, disconnected ‘anecdotes’ to interpreting them as part of a larger community history of trans-species relationships, which shares with the project of oral history the potentially revolutionary, paradigm-changing energies of ‘history from below’.57 These same revolutionary energies are what make a narratology beyond the human relevant for the critical medical humanities, and vice versa. Scholars of story are well positioned to contribute to a cross-disciplinary investigation of how narratives centring on human selves are imbricated with assumptions about those selves’ place within a more-than-human world. But a narratology beyond the human can pursue another critically important task in this connection: not just analysing how narratives locate the human agent, more or less explicitly, in a trans-species constellation of selves, but also assisting with the construction of new, more sustainable individual and collective stories grounded in an expanded sense of the self’s relationality, its situation within wider webs of creatural life. Work in the critical medical humanities can both gain from and contribute to this project of using stories, and methods of narrative analysis, to develop understandings of the self as transhuman in scope. The idea of transhuman selfhood can be illuminated by efforts to establish new lines of communication between humanistic research and clinical practice – new routes of exchange that allow for a rethinking of the very notions of self, relationality and wellbeing. In turn, the reassessment of these core ideas will be facilitated by a narratology beyond the human, given its commitment to engaging with stories about selves of all sorts.

Further Reading Arnold Arluke and Clinton R. Sanders, Regarding Animals (Philadelphia: Temple University Press, 1996). Eileen Crist, Images of Animals: Anthropomorphism and Animal Mind (Philadelphia: Temple University Press, 1999). Lorraine Daston and Gregg Mitman (eds), Thinking with Animals: New Perspectives on Anthropomorphism (New York: Columbia University Press, 2005). David Herman, ‘Narratology Beyond the Human’, DIEGESIS: Interdisciplinary E-Journal for Narrative Research 3.2 (2014), pp. 131–43. David Herman, ‘Animal Worlds in Modern Fiction: An Introduction’, Modern Fiction Studies 60.3 (2014), pp. 421–43. Fredrik Karlsson, ‘Critical Anthropomorphism and Animal Ethics’, Journal of Agricultural and Environmental Ethics 25 (2012), pp. 707–20.

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Garry Marvin and Susan McHugh (eds), Routledge Handbook of Human–Animal Studies (London: Routledge, 2014). Alan Roulstone, Carol Thomas and Nick Watson (eds), The Routledge Handbook of Disability Studies (London: Routledge, 2012). James Serpell, In the Company of Animals: A Study of Human–Animal Relationships, 2nd edn (Cambridge: Cambridge University Press, 1996). Kenneth J. Shapiro, ‘A Phenomenological Approach to the Study of Nonhuman Animals’, in Robert W. Mitchell, Nicholas S. Thompson and H. Lyn Miles (eds), Anthropomorphism, Anecdotes, and Animals (Albany: State University of New York Press, 1997), pp. 277–95. Jakob von Uexküll, A Foray into the Worlds of Animals and Humans, trans. Joseph D. O’Neil (Minneapolis: University of Minnesota Press, [1934] 2010).

Notes 1. 2. 3. 4.

5.

6. 7. 8. 9.

10. 11. 12. 13. 14. 15. 16.

Rupert Isaacson, The Horse Boy (New York: Viking, 2009), p. 34. Nuala Gardner, A Friend like Henry (London: Hodder, 2007), p. 124. Ibid., p. 146. Issues arising from the study of human–animal interactions and entanglements also bear relevantly on other sections of this Companion, particularly ‘Evidence and Experimentation’ and ‘Health, Care, Citizens’. For more on Karen Barad’s own conception of the dynamics of entanglement, in which discourses are ‘diffractively threaded through and enfolded in’ one another, see, for example, ‘On Touching – the Inhuman that Therefore I Am’, differences: A Journal of Feminist Cultural Studies 25.3 (2012), pp. 206–23 (p. 207). See Eduardo Kohn, How Forests Think: Toward an Anthropology beyond the Human (Berkeley: University of California Press, 2013), pp. 16–17. Erica Fudge, Animal (London: Reaktion, 2002), p. 8. Aubrey H. Fine, ‘Animal-Assisted Therapy’, in Michel Hersen and William Sledge (eds), Encyclopedia of Psychotherapy (London: Academic Press, 2002), pp. 49–55 (p. 49). Merope Pavlides, Animal-Assisted Interventions for Individuals with Autism (London: J. Kingsley, 2008); and Marguerite E. O’Haire, ‘Animal-Assisted Intervention for Autism Spectrum Disorder: A Systematic Literature Review’, Journal of Autism and Developmental Disorders 43 (2013), pp. 1606–22. Gail F. Melson, Why the Wild Things Are (Cambridge, MA: Harvard University Press, 2001), pp. 107–8. Ibid., pp. 105–6. Cited by Fine, ‘Animal-Assisted Therapy’, p. 49. Boris Levinson, ‘The Dog as a “Co-Therapist” ’, Mental Hygiene 46 (1961), pp. 59–65 (p. 60). Ibid., p. 64. Boris Levinson, ‘Human/Companion Animal Therapy’, Journal of Contemporary Psychotherapy 14.2 (1984), pp. 131–44 (p. 133). See also Melson, Why the Wild Things Are, p. 103. Levinson, ‘Human/Companion Animal Therapy’, pp. 134–6. See also Levinson, ‘The Dog as a “Co-Therapist” ’, p. 65; and Aaron Katcher, ‘Animals in Therapeutic Education: Guides into the Liminal State’, in Peter H. Kahn Jr and Stephen R. Kellert (eds), Children and Nature: Psychological, Sociocultural, and Evolutionary Investigations (Cambridge, MA: MIT Press, 2002), pp. 179–98, especially p. 193.

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17. Melson, Why the Wild Things Are, p. 117. 18. Aaron Katcher and Gregory G. Wilkins, ‘Dialogue with Animals: Its Nature and Culture’, in Stephen R. Kellert and Edward O. Wilson (eds), The Biophilia Hypothesis (Washington, DC: Island Press, 1993), pp. 173–97. 19. Katcher, ‘Animals in Therapeutic Education’, p. 195. 20. Stephen R. Kellert, ‘The Biological Basis for Human Values of Nature’, in Stephen R. Kellert and Edward O. Wilson (eds), The Biophilia Hypothesis, pp. 42–69 (p. 42). 21. Melson, Why the Wild Things Are, pp. 19–20. 22. Ibid. p. 130. Compare this passage from Isaacson’s The Horse Boy: within seconds of entering the trees, [Rowan’s] screams would lessen, fade and finally disappear when he found a patch of sand to run his fingers through, a piece of variegated bark to look at, or when he sat down on the trail to become lost in the intricate lace patterns of a dead yellow leaf. (p. 18) 23. Yannick Joye and Andreas de Block, ‘ “Nature and I are Two”: A Critical Examination of the Biophilia Hypothesis’, Environmental Values 20 (2011), pp. 189–215 (p. 193). 24. Ibid., pp. 198–9. 25. Janelle Nimer and Brad Lundahl, ‘Animal-Assisted Therapy: A Meta-Analysis’, Anthrozoös 20.3 (2007), pp. 225–38. 26. O’Haire, ‘Animal-Assisted Intervention for Autism Spectrum Disorder’, p. 1619. 27. Lori Marino and Scott O. Lilienfeld, ‘Dolphin-assisted Therapy: More Flawed Data and More Flawed Conclusions’, Anthrozoös 20.3 (2007), pp. 239–49 (pp. 241–3). 28. O’Haire, ‘Animal-Assisted Intervention for Autism Spectrum Disorder’, p. 1607. 29. For a discussion of the importance of accommodating this fourth level in scholarly work in general, see Will Viney’s review of Entangled: An Archaeology of the Relationships between Humans and Things, by Ian Hodder, in Critical Quarterly 55.2 (2013), pp. 110–15. 30. S. Eben Kirksey and Stefan Helmreich, ‘The Emergence of Multispecies Ethnography’, Cultural Anthropology 25.4 (2010), pp. 545–76 (p. 566). 31. Kohn, How Forests Think, p. 4. 32. Gardner, A Friend like Henry, p. 135. 33. Ibid., pp. 136–41. 34. In an appendix that includes Dale’s own retrospective account of the events his mother has written about in her memoir, Dale indicates that from the start he oriented to Henry as another locus of experience, a non-human self: Henry was just really gentle, friendly and sociable. I liked that he had a wise look on his face and I always trusted him, which made me feel very comfortable with him. You could see all this from his eyes, as they were lovely and I could understand his feelings from looking at his eyes and face. (p. 355) 35. Isaacson, The Horse Boy, p. 22. 36. Ibid., p. 5. 37. See Paola Cavalieri (ed.), special issue on ‘Nonhuman Personhood’, Etica & Animali 9 (1998), pp. 3–128. 38. See Marc Bekoff, ‘Animal Consciousness and Science Matter: Anthropomorphism Is Not Anti-science’, Relations 1.1 (2013), pp. 61–8. 39. See Evan Thompson, Mind in Life: Biology, Phenomenology, and the Sciences of Mind (Cambridge, MA: Harvard University Press, 2007).

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40. Chris Philo and Chris Wilbert, ‘Introduction’, in Philo and Wilbert (eds), Animal Spaces, Beastly Places: New Geographies of Human–Animal Relations (London: Routledge, 2000), pp. 1–34 (p. 5). 41. Rosi Braidotti, ‘Animals, Anomalies, and Inorganic Others’, PMLA 124.2 (2009), pp. 526–32 (p. 526). 42. See Lisa Marie Glenk, Oswald David Kothgassner, Birgit Ursula Stetina, Rupert Palme, Berthold Kepplinger and Halina Baran, ‘Salivary Cortisol and Behavior in Therapy Dogs During Animal-assisted Interventions: A Pilot Study’, Journal of Veterinary Behavior 9 (2014), pp. 98–106. 43. In Disability Studies: An Interdisciplinary Introduction (London: Sage, 2011), Goodley builds on the social model of disability proposed by Michael Oliver in The Politics of Disablement (London: Macmillan, 1990) to argue that the aim of disability studies is to dislodge ‘disability from its medicalised and moral origins. . . .’ Dis/ability ‘is not natural. Dis/ability is socially constructed’ (p. 8). Goodley also notes that, in the UK, the Union of the Physically Impaired Against Segregation (UPIAS) drew the distinction between impairment and disability, adapted in the definitions proposed by the Disabled People’s International (DPI). Whereas impairment is defined (somewhat circularly) as ‘the functional limitation within the individual caused by the physical, mental or sensory impairment’, disability is ‘the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers’ (quoted in Goodley, p. 8). 44. Mary Midgley, ‘Beasts, Brutes, and Monsters’, in Tim Ingold (ed.), What is an Animal? (London: Routledge, 1994), pp. 35–46. 45. C. F. Goodey, A History of Intelligence and ‘Intellectual Disability’: The Shaping of Psychology in Early Modern Europe (Farnham: Ashgate, 2011), p. 281. 46. Goodey notes how this emphasis on abstract logical reasoning as the defining characteristic of the human species can be traced forward to the rise of psychometric testing in the early twentieth century. See also Lyle V. Jones and David Thissen, ‘A History and Overview of Psychometrics’, in C. R. Rao and Sandip Sinharay (eds), Handbook of Statistics: Psychometrics, vol. 26 (Amsterdam: North Holland, 2006), pp. 1–27. 47. See A. O. Lovejoy, The Great Chain of Being (Cambridge, MA: Harvard University Press, [1936] 1964). 48. For a complementary discussion of the cultural construction of (dis)ability, see Bethan Evans and Charlotte Cooper, ‘Reframing Fatness: Critiquing “Obesity”’, in this volume, pp. 225–41. 49. In what follows, I seek to highlight ways in which cultural understandings of disability, defined broadly as non-normative intellectual traits, capacities and dispositions, have become entangled with particular narratives about the use of AAI for persons with autism. As I go on to discuss, some of these narratives, along with other discourses growing out of or centring on experiences of autism, resist or reject such attempts to link autism with disability. 50. Gardner, A Friend like Henry, p. 38. 51. Isaacson, The Horse Boy, p. 5. 52. David Herman, Storytelling and the Sciences of Mind (Cambridge, MA: MIT Press, 2013). 53. Ralf Schneider, ‘Toward a Cognitive Theory of Literary Character: The Dynamics of MentalModel Construction’, Style 35.4 (2001), pp. 607–40. See also Herman, Storytelling and the Sciences of Mind, ch. 5.

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54. Isaacson, The Horse Boy, p. 313. 55. The Horse Boy, DVD, Michel O. Scott. New York: Zeitgest Films, 2009. 56. On companion animals in genograms, see Kate Hodgson and Marcia Dowling, ‘Pets in the Family: Practical Approaches’, Journal of the American Animal Hospital Association 47.5 (2011), pp. 299–305. 57. See Donald A. Ritchie’s Doing Oral History (Oxford: Oxford University Press, 2003) for an account of oral history as history from below.

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27 AFTERWORD: MIND, IMAGINATION, AFFECT Felicity Callard

T

he eight essays in ‘Mind, Imagination, Affect’ address topoi, phenomena and historical junctures as varied as the prostrate form of an individual being put to death in the US via the necropolitical ritual of lethal injection; the prostrate form of Virginia Woolf that allows her to fashion, while prone with illness and ‘as a “deserter” ’ of the ‘army of the upright’,1 a new relationship with words; the affective piety of Margery Kempe’s copious tears; the dense relationalities that narratives about autistic individuals, their family members and animal assistants unfurl; and Antoine Artaud’s autoscopic, aesthetically realised fantasies in which bodies are eviscerated and suspended mid-air. The differences in these essays’ rhetorical styles, modes of argumentation and ontological commitments are startling – not least because all essays are authored or co-authored by a writer within the humanities (and, more specifically, with at least some affiliation to the disciplines of English literature or philosophy or art history). (This should drive home to us, once again, that we should not allow today’s intense investment in interdisciplinarity, both within the medical humanities and beyond it, to render us impervious to the profound differences in objects of study, accounts of human experience and modes of interpretation produced through intradisciplinary – or intra-humanities – heterogeneity.) We move from the almost plangent tones of Corinne Saunders’s concluding comments, in which she argues that by incorporating medieval worlds into a ‘long cultural perspective’, we, through ‘reading the past, [. . .] more richly read ourselves’;2 to David Herman’s energetic call for us to consider how a narratology beyond the human might assist with the construction of ‘new, more sustainable individual and collective stories grounded in an expanded sense of the self’s relationality, its situation within wider webs of creatural life’;3 to Martyn Evans’s insistence on our attending to the wonder provoked by our acknowledgement of ourselves as ‘embodied, experiencing beings’;4 to Lisa Guenther’s biting question: ‘Is there a meaningful distinction between a botched execution and a proper one? Or must we admit that there is no good way to execute a person?’5 Each essay has, then, its own affective tone. This tone is central to how each carves out its terrain of operations – as well as its objects of study – as being pertinent to the concerns of the medical humanities. Tone is also central to the means through which each chapter calls on, and out to, the imagination of its implied reader; and to how it

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elaborates the looping relationships between the worlds that belong to the protagonists on which it focuses, the narrator’s own point of observation and address, and the emotional and cognitive proclivities of its imagined reader. If each is united in its desire to address us as interlocutors within the capacious space of the critical medical humanities, then those calls have very different rhythmicities, tonal ranges, modes of construing affective transfer, and conceptions of the political. If each of these essays is gathered under the three complex abstractions of mind, imagination and affect, then each presses those abstractions into service as much through the rhetorical turns of its argument as through that argument’s explicit focus on one or more of those three terms. What these essays show, collectively, then, is how broad are the animating logics that braid the threads of the medical and the humanities together, as well as how diverse are the reactions against – or, at times, commitments to – a humanism that might buttress, if not guarantee, the claims made in relation to the figure of the human that lies at those essays’ heart. In this afterword, I schematically address two domains – the illness narrative and the body – in which those diverse animating logics (and in particular those that push against a tidy humanism) play out.

Deforming the ‘Illness Narrative’ If one were to accept the risk of invidiousness and pull out one of the most central preoccupations of the interdisciplinary field of medical humanities, then the illness narrative would surely be the selection that many would make. Rita Charon, in Narrative Medicine, one of the founding texts of that field, describes how ‘[d]octors, nurses, and social workers’, keen to complement a ‘scientifically competent medicine’ with the resources through which to ‘help a patient . . . find meaning in illness and dying’, ended up ‘turning for help . . . to people who know about narratives, which can be defined as stories with a teller, a listener, a time course, a plot and a point’.6 Much of the writing that has addressed ‘illness narratives’ within the medical humanities has operated, as Peter Garratt, David Herman, Edward Juler and Laura Salisbury variously and cogently demonstrate, with conventional (broadly humanist) models of the language of illness and of the self from whom such language might issue. Analyses of what are too commonly taken as exemplars of an ‘illness narrative’ too assiduously winnow down who might be understood as a ‘narrator’ – as well as what might be traced as a plot, assessed as meaningful, be understood as an outcome, and be interpreted, to use Charon’s formulation, as a story’s ‘point’. The essays in this section radically enlarge the purview of each of those narratological domains. Jonathan Cole and Shaun Gallagher, calling on the research of psychologist David McNeill, insist that gesture is not (only) an expression or representation of meaning, or vehicle for the communication of messages, but a mode of existing in the moment of speaking.7 Their analysis of the distinction that their collaborator Ian – the ‘patient’ within this story – makes between his gestures that he construes as ‘throwaways’ and those that he describes as ‘constructeds’ carries fascinating, oblique resonances with Salisbury’s elaboration of modernism’s deep and varied interest in the

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travails of discarded and sculpted language, as well as her interest in how phenomenological and neurological research in the mid-twentieth century opened up new means through which to understand the entangled relations between language, expression, consciousness, physiology, automaticity, meaning and communication. For Salisbury, to disrupt current conceptualisations of ‘illness narratives’ in the medical humanities requires not that we move beyond language, but that we ‘[burrow] into the resistant matter of language via modes that came to scientific, philosophical and aesthetic visibility in modernity – modes that dig into the recesses of non-propositional formulations or sheer away from linear coherence’.8 One important analytic and aesthetic problematic that emerges in the course of reading the essays in this section – and one that deserves significant future consideration by medical humanities scholars – is how to understand the relationship between Salisbury’s call to stay with the matter of language, and Juler’s claim for the ‘non- or pre-verbal language of graphic alterity’, which he finds in Artaud, and which, on Juler’s account, represents ‘that which is linguistically inexpressible: the haptic, the material, the optical and, above all, the visceral’.9 The matter of language – and that which lies inside, beyond and before it – has been an enduring concern in the humanities, not least since structuralism and its many theoretical aftermaths. It has been, though, in many respects under-investigated in much medical humanities scholarship. Several of the essays in this section correct that, and at the same time bring knotty problems regarding relations between the linguistic, graphic and affective into view. Before I leave illness narratives, I want to return to my juxtaposition, in the introduction, between the prostrate body of the individual-in-the-process-of-beingexecuted and the prostrate body of an ill Virginia Woolf. What might happen to and with the critical medical humanities if we considered both figures, rather than simply the latter, as kernels around which ‘illness narratives’ might form? What, in other words, if we considered Guenther’s extraordinary essay ‘On Pain of Death’ as a perverse illness narrative that deforms some of the founding assumptions of that genre as it has been imagined within orthodox medical humanities research? Guenther, after all, poses questions similar or identical to many of those asked by researchers in the medical humanities who are keen to address the phenomenological, technical and intersubjective characteristics of scenes that capture or emplace an individual in medical or quasi-medical contexts. She asks, for example, in relation to the epistemological and political stakes surrounding pain experienced during execution, ‘How does one know if another person is feeling pain?’ She raises the intractable problem – as do many concerned with the absence of the patient’s ‘voice’ in accounts of medical procedures – that the only individual who could provide robust evidence about whether pain is being felt is precisely disqualified from doing so by dint of the particular configuration in which he is captured. She demonstrates – and here she joins a large cohort of researchers preoccupied with the power that the medical domain can wield – the potency of ‘selective [appeals] to medical authority, technology, and practices’.10 She notes the absence of any ‘objective test for the presence or absence of consciousness awareness’,11 and then describes how one of the attendees in this

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‘quasi-medical’ scene (here, the warden) is – as in so many other medical scenes – positioned as having to ‘read’ the body of the prostrate body that lies before him. And she demonstrates how, on the state’s account, execution ‘becomes legible as yet another terminal disease’.12 But, of course, the entire force of Guenther’s analysis is centred on her refusal to confer on this scene the gravitas of the medical, for there is no patient, no disease, no defensible medical practice, no commitment to understanding whether pain is being experienced by the one being intervened upon. There is, instead, the deliberate putting to death of an individual by the state. Guenther’s essay could be said to stage a kind of illness narrative precisely so as to challenge – and expose – the ferocious and obdurate violence meted out under the cover of a quasi-medical scene. In her account, the narrative that the state might tell – one that is committed to conveying its ‘civilised methods of execution appropriate for use by a Western democratic nation’13 – is upturned. Guenther’s own, complex narrative, which draws specific attention to how the ‘twenty-first-century American death house’14 attempts to install practices of care, and illusions of the clinic at its heart, exposes the state as simultaneously Ubu the King – whose ‘obscene form of sovereignty’15 operates at a distance – and Ubu the Pen-pusher (in the garb of the ‘imbecilic’ functionary, who prods and fiddles with a prostrate form in a room decked out in ersatz medical style).16 To consider Guenther’s essay as sitting, however uncomfortably, within the genre of the ‘illness narrative’ allows us to discern how significant her narratological and political achievements are in her rupturing of the common ways in which the medical humanities have imagined a story’s teller, listener, time course, plot and point.

Figuring the Body In a section titled ‘Mind, Imagination, Affect’, the frequency with which the body is foregrounded is notable. Scholars of affect and emotion might well interrupt me at this point: How could the body not appear, given that emotion is, after all, grounded in and through the body? But what is striking in these essays is how the body does not simply appear as a guarantor for an ‘embodied emotion’, but rather as a topos worthy of consideration in its own right. We see this, for example, in Saunders’s insistence that the fluid, pre-Cartesian imbrication of body and mind poses challenges for researchers in many disciplines today who are struggling to address complex, multi-sensory phenomena (such as voice-hearing and visions); in Evans’s turn to the body in the course of his search for ‘a view of patients that does justice to their personhood and their objecthood alike’;17 and in Garratt’s attention – as he pursues Victorian models of mental fatigue, and the labour of reading – to scientists’ and clinicians’ interest in the physical basis of aesthetic experience.18 This turn to bodily matters is often concurrent with the author’s problematisation of where the evidence of experience lies (and what the political and aesthetic consequences of such a problematisation might be). We see this particularly in relation to the fugitive phenomena of voice-hearing (Saunders), pain (Guenther), visceral

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sensations (Juler), gestures (Cole and Gallagher), depressive sadness (Garratt), and the particular texture of human and animal affective relationalities (Herman). In using the phrase ‘the evidence of experience’ (a phrase made famous by the feminist historian Joan Scott),19 I am thinking of how these authors often raise to visibility difficulties in accounting for the source and phenomenological density of these phenomena, as well as in adjudicating the person (or entity) who is deemed best placed to describe and analyse them. Juler, for example, describes the ‘autoscopic undercurrents’ of Artaud’s depictions of the body, noting how they ‘echo[ed] the pathological case-studies of psychophysiology’ whereby individuals claimed to observe their body, and their bodily organs, from the inside.20 But what might be lost if we too readily read Artaud’s aesthetic interventions through the lens of psychophysiological expertise? Herman turns in part to individual narratives of the positive effects of animal assistants for people who are autistic to challenge orthodox clinical models of evidence that are grounded in scientific studies reliant on particular models of treatment outcomes. Herman considers, in this respect, how the ‘use of the term “anecdote” ’ – which is commonly used to vitiate the potency of a story – ‘[itself might] lead to the trivialisation and neglect of narratives that deserve closer scrutiny’.21 And Guenther, as we have already seen, points to the unassailable fact that the individual who could offer robust evidence concerning the phenomenological effects (physically felt, mentally endured) of the quasimedical intervention forced upon him is structurally disqualified from doing so. These essays, as a whole, then, displace in various ways the figure of the singular subject construed as a locus for authentic, legible and/or discursively audible communications. In many of the essays within this section, there is, at the same time, a potent sense of the pathological, the violent, the decaying and the dissolute as enduring, insistently, within the everyday experience of being human – rather than coming, unbidden, as an effractive force from the outside that disrupts an untroubled and pellucid self. We should not underestimate the significance of this for helping build new directions for a critical medical humanities. For, even as there exist many exceptions to the rule, medical humanities has, to my mind, long been hampered by a frequent assumption that certain things that characterise human experience tend to line up, unproblematically, one alongside the other. A partial list might include: the readability of the body; the clarity of the communicative acts that are given through language and gesture; the urge to health; the ennobling achievements of aesthetic engagement; the succour offered by particular forms of narrative closure. If we were to pick out two instances in which this smooth passage is upset, we might note Garratt’s insistence that nineteenth-century writers frequently regarded ‘the literary–aesthetic realm . . . in itself as injurious or corrupting to health even while art is valorised as an imaginative or spiritual resource capable of transforming lived experience’,22 or Salisbury’s delicate reading of Woolf through which she cogently avers that, for Woolf, ‘illness is both the instigator of revelation and the normal run of things; illness marks the extraordinary as a quality furled inside the very fabric of the common.’23 Such arguments often go hand in hand with the rendering visible of the heterogeneity of that domain of thought and practice we call medicine (as well as of the life

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sciences that lie in such intimate relationship with it). In many of these essays, ‘medicine’ appears in markedly different forms from those flat, inert images that many of us in the medical humanities are too wont to conjure up. For if today’s default reaction amongst some humanities scholars is to lament the ‘biomedical reductionism’ of medicine and its allies – and, indeed, we see such laments in some of these essays – what is abundantly clear is the strangeness, perversity and cobbled-togetherness of much of what passes as the ‘medical’ or ‘clinical’ in these authors’ essays. Consider how Salisbury’s exploration of aphasia narrates complex passages that lead from the work of neurologist and psychiatrist Kurt Goldstein and Gestalt psychologist Adhémar Gelb to the phenomenological explorations of Merleau-Ponty. Here, the philosopher, the life scientist and the psychologist are equally preoccupied with understanding the complex tangle of the physiological, the psychological and the existential that might help to elucidate the human being’s projection ‘towards a “world” ’.24 Or consider the assemblage constituted by the clinician Cole, the psychologist McNeill, the philosopher Gallagher and the patient Ian, who, together, tinker and experiment so as to produce new understandings of the semiotics, physiology and phenomenology of gesture in the unmarked as well as the ‘damaged’ body.

Why Critical? That no easy cut might be made between the ‘medical’ and the ‘humanities’ in many of these heterogeneous essays surely opens out new questions, frameworks and orienting ontologies for those of us intrigued by the promise of critical medical humanities.25 But we should note that these essays install various visions – both explicit and implicit – of what the ‘critical’ of the critical medical humanities is, and where it might take us. Some authors powerfully articulate a somewhat familiar defence of the role that humanities research might play in relation to various shibboleths that characterise the domains of medical thinking and of therapeutic exhortations. Garratt, for example, turns to models of mental pathology within Victorian literary aesthetics in order to displace John Carey’s strange endorsement of both a relativist account of aesthetic impact and a Leavisite shoring-up of where literary value and goodness lie. The efforts in the mid-nineteenth century to address how the senses and the nervous system are central to understanding the complex effects of artistic works on those who encounter them are, for Garratt, important correctives to today’s easy arguments surrounding the benefits of bibliotherapy. Here, then, engagement with the mid-nineteenth century’s ‘sometimes hidden aesthetic models’ might ‘historically enrich any current medical humanities research predicated on determining the relationship between the ends of aesthetics and particular embodied subjects’.26 This sense of the humanities as ‘enriching’ is also found in Saunders’s claim that the medieval can ‘illuminate, complicate and validate’ current scientific and medical models;27 and in Cole and Gallagher’s conviction that phenomenological attention to the first-person, patient perspective ‘can help us understand more’.28

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In other essays, the desire to intervene in the world – ontologically as well as epistemologically – is expressed more acutely. Herman is keen to draw from the ‘potentially revolutionary, paradigm-changing energies of “history from below” ’ in his call for new individual and collective stories that situate humans ‘within wider webs of creatural life’.29 Guenther argues, with exquisitely calibrated anger, that what is required – if one accepts the implications of her argument about the strange logics of the death penalty – is not a philosophical clarification of the distinctions between the humane and inhuman, or the proper and the improper, but ‘an abolition of the death penalty in all its forms, through a radical reconfiguring of meaning and power’.30 These essays offer us varied accounts of the intellectual and political work that might be achieved within critical medical humanities if we tell different kinds of stories and depart from desiccated explanations of their ‘point’. They allow us to think more carefully about who, in relation to the areas of health and pathology, is granted the gravitas with which to denote, speak about and interpret a medical (or para-medical, or quasi-medical) scene. They put pressure on how the medical humanities too readily determines which kinds of mark, gesture and utterance might be endowed with meaning, and which brushed aside as meaningless. And they push us to think more keenly about whose narratives about minds, bodies, imaginations and affects come to stick, and whose are structurally or implicitly foreclosed.

Acknowledgements This research is supported by The Wellcome Trust [103817/Z/14/Z].

Notes 1. Virginia Woolf, On Being Ill, with Notes from Sick Rooms by Julia Stephen (Ashfield: Paris Press, 2012), quoted in Laura Salisbury, ‘Aphasic Modernism: Languages for Illness from a Confusion of Tongues’, in this volume, p. 451. 2. Corinne Saunders, ‘Voices and Visions: Mind, Body and Affect in Medieval Writing’, in this volume, p. 423. 3. David Herman, ‘Trans-Species Entanglements: Animal Assistants in Narratives about Autism’, in this volume, p. 476. 4. Martyn Evans, ‘Medical Humanities and the Place of Wonder’, in this volume, p. 349. 5. Lisa Guenther, ‘On Pain of Death: The “Grotesque Sovereignty” of the US Death Penalty’, in this volume, p. 396. 6. Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford and New York: Oxford University Press, 2006), p. 3. 7. David McNeill, Gesture and Thought (Chicago: University of Chicago Press, 2005), pp. 99–101; quoted in Jonathan Cole and Shaun Gallagher, ‘Narrative and Clinical Neuroscience: Can Phenomenologically Informed Approaches and Empirical Work Cross-Fertilise?’, in this volulme, p. 382. 8. Salisbury, ‘Aphasic Modernism’, p. 458.

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9. Edward Juler, ‘Man’s Dark Interior: Surrealism, Viscera and the Anatomical Imaginary’, in this volume, p. 372. 10. Guenther, ‘On Pain of Death’, p. 397, p. 401. 11. Ibid., p. 404. 12. Ibid., p. 402. 13. Ibid., p. 397. 14. Ibid., p. 401. 15. Ibid., p. 396. 16. Ibid. Guenther is quoting from Michel Foucault, Abnormal: Lectures at the Collège de France, 1974–1975, trans. Graham Burchell (London: Picador, 2004). 17. Evans, ‘Medical Humanities and the Place of Wonder’, p. 350. 18. Peter Garratt, ‘Victorian Literary Aesthetics and Mental Pathology’, in this volume, p. 434. 19. Joan W. Scott, ‘The Evidence of Experience’, Critical Inquiry 17.4 (1991), pp. 773–97. 20. Juler, ‘Man’s Dark Interior’, p. 367. 21. Herman, ‘Trans-Species Entanglements’, p. 468. 22. Garratt, ‘Victorian Literary Aesthetics and Mental Pathology’, p. 429. 23. Salisbury, ‘Aphasic Modernism’, p. 458. 24. Ibid., p. 455. 25. Cf. William Viney, Felicity Callard and Angela Woods, ‘Critical Medical Humanities: Embracing Entanglement, Taking Risks’, Medical Humanities 41.1 (2015), pp. 2–7. 26. Garratt, ‘Victorian Literary Aesthetics and Mental Pathology’, p. 440. 27. Saunders, ‘Voices and Visions’, p. 414. 28. Cole and Gallagher, ‘Narrative and Clinical Neuroscience’, p. 378. 29. Herman, ‘Trans-Species Entanglements’, p. 476. 30. Guenther, ‘On Pain of Death’, p. 405.

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Part IV Health, Care, Citizens

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28 MEDICAL MIGRATION AND THE GLOBAL POLITICS OF EQUALITY1 Hannah Bradby

Introduction mploying doctors and nurses who were trained overseas has been standard practice since the inception of the British National Health Service (NHS) in 1948. However, by the twenty-first century, recruitment of doctors from Africa was being compared with the slave trade in terms of its exploitative and damaging effects: ‘current policies of recruiting doctors from poor countries are a real cause of premature death and untreated disease in those countries and actively contribute to the sum of human misery.’2 The assertion that employing foreign doctors was causing poor health in those doctors’ countries of origin was echoed in two reports from global health organisations, which stressed the emigration of skilled healthcare personnel from the sub-Saharan region of Africa as being related to concomitant deterioration in populations’ life expectancy and declared a ‘global health workforce crisis’.3 Attending to this shift whereby the recruitment of doctors (and also nurses) trained overseas stopped being a taken-for-granted employment practice and became instead an emotive and fraught issue on the global public health agenda is this chapter’s topic. The chapter traces a shift from the period when foreign medical staff were relatively invisible as a policy concern in the British NHS to the time that their recruitment was being constructed as illegitimate. The claims made to effect this shift are examined, with a particular focus on the 2006 World Health Organisation (WHO) report and the interpretations of data presented. A causative link was asserted between the migration of skilled medical professionals from Africa and the failing population health outcomes of their countries of origin, and this was supported by referring to particular models of migration and health outcome. Specifically, these models had a delimited view of migration and ignored both underlying socioeconomic variables and the interests of capital so as to render a medicalised explanation of poor health outcomes possible. Models draw on particular variables, making sense of our world by picking out its key aspects, and thereby simplifying and seeking to explain the world. Models not only reflect the world but also are simultaneously powerfully constitutive of the world,4 as shown by the history of race,5 where naming racial groups brings them into existence in the public imagination and reifies them as research categories. While such simplification is inevitable, a misconstrued overemphasis on the wrong variables, such as race,

E

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is not simply a poor reflection of reality, in that it configures the world inappropriately, but is a process that has consequences. In attending to migration only as a manpower problem, whereby the distribution of skilled labour is assumed to be open to manipulation, models have focused attention away from evidence of migrants’ agency and aspirations, and from other important variables. This chapter presents a critique of economic and epidemiologically informed models of medical migration, drawing on material from sociology, human geography, labour studies, health policy and history. The difficulty of apprehending the ethical and social dimensions of health professionals’ global movements in a way that includes their individual and collective rights and obligations in different national and market contexts is explored. The critique demonstrates how an interdisciplinary approach integrating quantitative, qualitative and subjective assessments could have prevented the inappropriate interpretation of a limited amount of quantitative data to inform policy that had little benefit and some negative outcomes for medical migrants. The delineation of ‘sub-Saharan Africa’ as a meaningful geographical space in the ‘global health workforce crisis’ debate is open to criticism. Sub-Saharan Africa, as a construction of the global North,6 constitutes a ‘racist geopolitical signature’ referring to ‘Black Africa’ by excluding the primarily Arab countries of North Africa, oversimplifying the geopolitics of global health.7 Despite the disadvantages of this nomenclature, the reification is perpetuated here, given the construction’s central role in the debate under scrutiny. Similarly problematic in its homogenising effect, often occluding more than it reveals, is reference to skilled healthcare migrants. Writing on medical migration from the twentieth century refers primarily to physicians’ global movements – what used to be called medical manpower.8 As the century proceeds, the feminisation of migration sees the movements both of women doctors and of the predominantly female profession of nursing, and general terms appear in reports to refer to doctors, nurses and midwives who migrate: healthcare professional, skilled medical migrant, medical worker,9 human resources for health (HRH), skilled health worker (SHW),10 international medical graduate (IMG) and health work force.11 Terms such as ‘skilled medical migrant’ potentially cover a range of professions (such as laboratory technician, dietician, physiotherapist, orthotist), but research on global medical migration is generally restricted to physicians and nurses (usually including midwives), since these professionals must register for a licence to practise and so are traceable via the resulting database. The migration of a senior forensic science technician may be damaging for a city’s public health policy, but if it does not show up in an official register it is hard to study as part of a migratory movement. The inclusion of doctors and nurses under a single heading of ‘migrant health professionals’ is inappropriate in that they are differentiated in terms of gendered professional politics in the global medical market. A distinct literature has developed around nurses’ global movements more recently than the longer-standing concern about physicians’ mobility. Nurses make up a large proportion of medical labour employed by most healthcare systems and

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in this respect their mobility is a significant feature of a system’s ability to function. However, physicians have been successful in claiming the professional monopoly for medical healing and have thereby come to symbolise healthcare, as will be discussed below. A history of medical dominance has meant that nurses’ professional interests have been linked to and often subsumed by physicians’, such that doctors’ rights and privileges have come to symbolise not only a country’s priorities around healthcare, but also those of the nursing profession. Doctors’ and nurses’ licences to practise are managed at national level, and while these data are usually in the public sphere and so open to analysis, there are difficulties in interpretation to be noted. Migrant medics may maintain a practice licence in their home country while simultaneously seeking a licence in the new setting, with the maintenance of multiple licences more likely if a step-wise migration is the aim. A nurse or physician’s country of training does not necessarily coincide with her/ his country of origin, in view of the former USSR and Cuba having offered medical training to foreigners and, more recently, with the rise of private medical schools in India and English-language medical training in Eastern Europe. Medical and nursing training tends to be forecast, planned and delivered on a national basis; countries that educate professionals explicitly for export, such as Cuba, Ireland and the Philippines, have been exceptional. Yet trained medical and nursing professionals do not necessarily behave like a nationally bounded workforce. Consider, for example, the surgeon who travels to a country to perform a limited number of highly specialised operations, or even a single one, but who must none the less be licensed in that country, despite not being resident. Such trans-national work patterns are not confined to elite surgeons, in view of contracts for out-of-hours medical coverage in the UK that have routinely employed continental Europe-based general practitioners in addition to their regular work. Thus, there are difficulties in cross-referencing national datasets12 with professional registers in order to enumerate migration flows, since double-counting of individuals reduces the accuracy of registration data as an absolute count of individuals.13 Analysis of these registries can reveal trends in movements that may inform debate, but cannot be understood as a reliable picture of individuals’ whereabouts.14

Medical Mobilities The international movement of medical staff and medical practice has been studied as a feature of empire, whereby metropolitan centres sent trained doctors and nurses out to colonial territories, often in parallel with missionary work.15 The establishment of medical and nursing schools in colonial settings that followed metropolitan curricula in the language of the colonial power ensured the ongoing movement of personnel and expertise even after independence from the colonial power.16 These colonial links were significant in twentieth-century mass movements of people from the Indian subcontinent and Caribbean to Britain, some of whom made good the skilled labour shortages in the NHS. Colonial links allowed the UK to draw on a reserve army of

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labour:17 between 1966 and 1968, 40 per cent of all work vouchers issued by the Ministry of Labour, conferring permission to enter the UK, were for physicians, and in the early 1970s, when new immigration acts restricted entry to the UK, exemptions were made for doctors and nurses.18 Arguably, policy-makers treated immigrant doctors and nurses as ‘dispensable commodities, a tapped supply to be turned on and off at will’, not just by the UK Ministry of Labour, but generally ‘by the wealthier countries who can afford to employ them for their own needs’.19 While more recent scholarship has pointed to the centrality of immigrant doctors and nurses (not to mention less skilled immigrant labour) in creating and developing the NHS, there was little recognition of this at the time when migrants were arriving.20 Honourable exceptions include a public acknowledgement in the House of Lords in 196121 and a report a decade later.22 More prominent in the second half of the twentieth century was the assumption that immigrant medics were benefitting from access to first-world technology and training opportunities. Foreign-trained doctors only tended to come to public attention when their English language skills or other aspects of their fitness to practise were called into question.23 In the 1960s, the concern was focused not so much on the arrival of overseastrained doctors, but rather on the departure of British-trained doctors. By the late 1960s, 400 doctors per year, or one-fifth of the total medical school output, were leaving the UK.24 The term ‘brain drain’ first appeared at this time to refer to the failure of British academics and scientists to return from sojourns in the US.25 These emigrants from the UK were seeking new opportunities and there was no attempt to regulate their departure. At the same time, the arrival of doctors from former colonial settings was treated as a temporary immigration that would eventually be ensued by a return ‘home’, returning things to ‘normal’.26 Grasping the dimensions and implications of complex migratory patterns, where many countries were both receivers and senders of medical labour, has long been hampered by poor statistical data.27

African Brain Drain Inadequate data notwithstanding, a view that the loss of skilled healthcare personnel from poorer countries’ health systems was ethically problematic emerged; the WHO determined a ‘global health work force crisis’ and declared an estimated 4.3 million ‘human healthcare resources’ to be missing from global health systems.28 In the wake of the devastating effects of the human immunodeficiency virus (HIV) epidemic in sub-Saharan Africa, the emigration of physicians and nurses from Africa was seen as particularly problematic and described in highly emotive terms.29 The Republic of South Africa played a totemic role in raising the ethical dimension of global medical migration, having the largest number in the world of both HIV infections, and healthcare staff emigrating to work in rich anglophone countries. This was described as the ‘embarrassing optics of rich countries exploiting the health human resources of African countries devastated by the AIDS

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epidemic’, which, while undeniable, ignored the immigration to South Africa of healthcare staff from neighbouring countries, such as Zimbabwe.30 Overlooking the complexity of the South African healthcare system being simultaneously destination for and source of skilled medical migrants, the ‘departure of trained professionals from low income countries to find work in high income countries’ was described ‘as a perverse subsidy’.31 By the early 2000s, between 23 and 34 per cent of practising physicians in New Zealand, the UK, the US and Australia had been trained elsewhere, with the proportion of overseas trained nurses somewhat lower.32 The proportion of these healthcare workers who were trained in sub-Saharan Africa was (and remains) hard to ascertain, given the difficulties of tracking their international movements, but one estimate suggested that approximately 65,000 African-born physicians and 70,000 African-born professional nurses were working overseas in a developed country in the year 2000.33 These numbers amount to about one-fifth of African-born physicians in the world, and about one-tenth of African-born professional nurses. However, the fraction of an African nation’s emigrated health professionals varied enormously between different countries and different occupational specialisms, from 1 per cent to over 70 per cent. Despite the great variation in the numbers of professionals lost from African countries’ healthcare systems, the generalisation of African-trained physicians being employed to care for populations elsewhere continued to constitute a powerful symbol of gross global inequity. The injustice of rich nations stealing the trained personnel of poor nations had become encapsulated in the idea that ‘There are allegedly more Malawian doctors in Manchester than in Malawi.’34 Despite the anecdotal nature of the story being noted, the idea of Malawian physicians congregating in Manchester persisted as a recurring symbol of sub-Saharan Africa’s suffering at the rich world’s expense. Compelling journalism described the effects of the lack of trained staff on maternity care in Malawi,35 and while trained staff doubtless emigrated to the UK and elsewhere, the clustering in Manchester seems to have been an urban myth lacking a sound numerical basis.36 The story of Malawian doctors in Manchester served to illustrate the human aspect of global economics and migratory movements. That sub-Saharan Africa was losing skilled healthcare personnel in parallel with an unfolding public health crisis was shown by the collapse in life expectancy in Zimbabwe and Zambia (from between 50 and 58 years during the 1980s down to below 40 years by the year 2002). The direct and deleterious effects of the emigration of skilled healthcare staff on the populations of their home African countries were a key message of the two reports, with a causative correlation asserted between the collapse in life expectancy and the low density of healthcare personnel.37 Following the Joint Learning Initiative report’s lead, the 2006 WHO report states there to be ‘ample evidence that worker numbers and quality are positively associated’, illustrated by a graph positively associating measures of infant, child and maternal survival with healthcare worker density.38

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Figure 28.1 ‘Health workers save lives!’, reprinted from WHO, Working Together for Health. The World Health Report 2006 (Geneva: World Health Organisation, 2006), p. xvi, Figure 1. Source: .

Closer examination of the research cited as source for this graph39 shows that the evidence is fragmentary and sometimes contradictory.40 A higher density of doctors, nurses and midwives has been positively associated with maternal mortality rate and, to a lesser extent, with infant mortality rate and under-five mortality,41 but other analyses find no association between doctor density and infant mortality,42 and no association between doctor density and infant or maternal mortality.43 Similarly, no association has been found between nurse density and measures of maternal and infant mortality,44 nor between the concentration of doctors and nurses and the utilisation of six essential health services.45 The article cited to support the positive association between measures of infant, child and maternal survival and healthcare worker density does indeed demonstrate an independent effect of healthcare professional density on mortality rates in a multi-country analysis. However, the article frames its findings cautiously, suggesting that the density of human resources plays a role ‘in addition to other determinants’ when ‘accounting for the variation in rates of maternal mortality, infant mortality, and under-five mortality across countries’.46 This is the point overlooked in the fevered discussion of the global health workforce crisis: density of healthcare personnel and life expectancy are both responding to underlying socioeconomic conditions, as will be described below. In underplaying dismal socioeconomic conditions as crucial causative variables for falling life expectancy, in favour of emphasising the presence of skilled healthcare staff, the structural effects on both healthcare worker exodus and poor population health have been overlooked. In modelling the relationship between the density of doctors and nurses and the life

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expectancy of the population, underlying conditions that affect both were ignored. The failure to identify fundamental causes and focus on proximal causes instead is puzzling, given that these causes were neither buried in distant history, nor undocumented, as will be considered in the next section.

Explaining Poor Life Expectancy The socioeconomic circumstances of countries with falling life expectancy can be traced back to the global debt crisis of the late 1970s, when African countries were obliged by the World Bank and International Monetary Fund to ‘de-prioritize’ investment in their social sectors – including health and education – in favour of promoting export currency to enable interest payments on loans owed to foreign banks. The effects of this 1980s programme of ‘structural adjustment policies’ (or ‘brute neoliberalism’47) became apparent through the 1990s: a lack of resources led to the suspension and mandatory early retirement of healthcare professionals; the public health sector shrank, and the private health sector grew.48 The shrinking health sector promoted the emigration of health professionals from rural to urban settings, from public service to private sector jobs, and abroad to better-paid opportunities. Health professional shortages, combined with under-investment in equipment, buildings and training, exacerbated poor working conditions for health professionals and therefore emigration, especially in areas where HIV was prevalent and/or spreading.49 The effects of ‘structural readjustment’ have thus promoted emigration by ensuring that health service jobs in poor countries’ public sectors are the least attractive, but it is not clear that the departure of trained staff was the primary cause of falling life expectancy. Rather, the retraction of resources across all welfare and education sectors reduced the life chances of a range of people and especially the most vulnerable. In this view, the emigration of healthcare staff and falling life expectancy were both outcomes of the same ‘brute neoliberalism’. How, then, can we explain the excessive focus on ‘low healthcare personnel density’ as ‘causative’ of falling life expectancy? Why did the 2006 WHO report assert such causation with limited empirical evidence? Medicalisation of global public health problems, whereby non-medical problems come to be defined and subsequently treated as medical problems, offers one explanation.50 As a strategy, and in the context of a statutory monopoly on provision of health services, medicalisation has ensured medical influence over matters that might otherwise be thought of as social, political, judicial or theological (for instance, delinquency, homosexuality and infertility). The definition of global health problems, such as falling life expectancy, as a problem of low health professional density looks like a case of medicalising a problem with a far more complex genesis. This analysis has been facilitated through a delimited modelling of migration, making African-trained healthcare workers’ movements apparently open to simple manipulation and regulation. We go on to consider the limitations of models of medical migration and how these have supported the medicalisation of the problem of poor population health outcomes.

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Delimited Models of Migration The claim that ‘healthcare professionals save lives’, combined with a model of doctors and nurses as ‘migration flows’, gave rise to simplistic solutions to the ‘workforce crisis’ whereby the flows are manipulated. If the emigration of trained healthcare personnel is seen as causing poor health outcomes, interventions to regulate migration ‘flows’ come to represent a means of promoting health. In seeking to manage ‘increased migratory flows for equity and fairness’,51 migration is treated as a flow or current ‘that can be contained, regulated or influenced’.52 Plumbing models render so-called ‘healthcare human resources’ a mobile commodity open to manipulation through preventing emigration, promoting return migration and introducing so-called ‘ethical recruitment’. Viewing medical migrants as ‘intellectual property’53 that will follow the gravity of income differentials, flooding from poor to rich work settings, and where altering the location does not affect the quality of service provided, relies on an assumption of ‘perfect human capital transferability’.54 Viewing healthcare workers as a mobile and transferable resource whose flow is open to regulation is misleading on various fronts. Migration has never been straightforwardly or only driven by market demand and salary differentials, such that reducing the employment opportunities or income differentials stops the movement of people. The debate around the ‘global healthcare resources crisis’ has had a limited approach to migration focused on national workforce planning, whereas the process of migration is more complicated and contradictory than a simple transfer of expertise from one location to another, playing out on a number of levels, including international, national, local and individual. Without the inclusion of historical structural causes of poverty, as well as the individual motivations of migrants, the model of migration is highly partial. Migration is shaped by distinctive policy processes and political structures, including legislative regulation responding to the perceived needs of education, industry and welfare provision and populist sentiments towards incomers.55 The planning of healthcare needs and staffing is increasingly being seen as another aspect of government relevant to migration.56 Planning and modelling of migration and healthcare take place at the population level, but the displacement of people operates at the small group and individual level, motivated, as it is, by hopes, expectations and aspirations that migrants hold for themselves and their immediate and extended families.57 These motivations can be so powerful that migrants may travel to a new location, even in the absence of a recruiting agency or a job offer.58 The prospect of doubling or trebling one’s income by migrating to another country represents a powerful motivation for an individual, but it is not a determinist influence, as shown, for instance, by migrants’ allegiance to a particular locality: Danish medical professionals tend to migrate within Scandinavia and Zambians towards South Africa, such that migration extends rather than transfers a person’s belonging. The tendency to maintain contact with more than one locality has led some to speak of brain circulation rather than brain drain.59 While the circulation model may overemphasise the likelihood of skilled

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professionals returning to resource-poor settings, it has the virtue of rendering visible migrants’ agency. Various interventions have been proposed to manage ‘migratory flows for equity and fairness’, included restricting and regulating migration to promote return migration to countries with public health problems.60 These suggestions have been criticised for ignoring workers’ assessment of their own interests and for violating individual freedom of movement.61 A doctor or a nurse’s presence in a country does not necessarily mean that she or he would take up public-service posts in the rural and/or impoverished areas where the health need is greatest. Return migrants with overseas training are likely to opt for specialist rather than primary or community care posts, and professionals tend to opt for private practice or to switch occupations, rather than practise medicine in difficult conditions.62 Attempts to restrict international recruitment and to introduce incentives for skilled healthcare workers to stay in their country of training have proved largely ineffective in sub-Saharan Africa63 and alternative solutions have been sought.64 A study of fifteen trained physicians’ return to clinical practice in South Sudan, having previously fled the conflict there, suggests that sustained and substantial institutional support was needed to overcome significant barriers to return-migration involving finance, professional and language skills, and the legalities of citizenship.65 Attempts to regulate healthcare professionals’ international migration on ethical public health grounds have been further criticised for constructing doctors and nurses from poor settings as carrying an exaggerated moral responsibility for the public health of their country of origin.66 To assume that sub-Saharan doctors and nurses should take moral responsibility for the public health problems of their country of origin is to ignore the evidence that a prime reason for training in medicine may be to facilitate subsequent migration.67 Paradoxically, a tendency to treat refugee healthcare professionals as if they were labour migrants has allowed forced migration in the health sector to be reclassified as economic migration, allowing professionals to practise in their new host country and thereby promoting ‘brain drain’.68

Medicalisation Treating medically trained refugees as labour migrants is promoted by ‘medical exceptionalism’, whereby skilled healthcare workers are treated as particularly precious to and vital for a society’s wellbeing, in comparison with other types of workers: as ‘crucial instruments of health . . . doctors and nurses should be treated differentially – indeed exceptionally well, exceptionally soon – for ethical reasons that go far beyond their own well-being’.69 Medicalisation supports an over-attribution of health-promoting power to health professionals, treating doctors and nurses as exceptionally effective and valuable. When combined with conceptualising medicine as a universally applicable system of knowledge, it opens up trans-national spaces for exploitation of migrant medical

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expertise. The idea that a nurse trained in the Philippines can care equally effectively in Europe as in South-east Asia and that an Indian-trained doctor’s knowledge and expertise are equally applicable in the US is a commonplace of medicine’s scientific claims. The treatment of medical expertise as a valuable, universally applicable commodity, which can be translated across contexts, is what makes it open to being capitalised through international recruitment agencies. Lower training costs in the Philippines and India, compared with, for example, the US, are a feature of uneven global development exploited by international medical recruitment agencies and by national health systems that hire healthcare staff from countries with cheaper training costs and lower wages. The uneven cost of medical labour has opened up a global market in elective and particularly aesthetic surgical procedures, often referred to as ‘health tourism’. But it is not only in plastic surgery that the spatial, nationally bounded models of healthcare provision are being reconfigured, as evidence emerges of non-elective practices being subject to the same market forces. Indian-trained professionals and healthcare cadres with limited training offer open-heart surgery, angioplasty, and knee and hip replacement in the Cayman Islands at prices 40 per cent lower than US ones and with good outcomes.70 ‘Task-shifting’ is used to reduce the training time (and therefore salary) for cadres of healthcare workers and cut the costs of post-surgical care, while surgeons from India are cheaper to hire than their American equivalents. Task-shifting is the process of moving specific tasks to lower-paid and lesser-trained staff to make good the shortages of skilled workers. In poor countries, task-shifting is being used to train nonphysicians to undertake emergency obstetric care71 and deliver anti-retroviral therapy in the absence of other healthcare staff, whereas in the Cayman Islands, task-shifting and the employment of migrant surgeons are attracting mobile patients in order to make a profit.72 Profit-making institutions rely on the mobility and transferability of medical expertise and have an interest in promoting a view of the migrants as mobile vessels of that expertise, which can be unproblematically relocated (for a fee). The reports that pointed to the emigration of African healthcare professions as problematic for public health also relied on modelling migration as impersonal flows of ‘human healthcare resource’, permitting solutions centred on redirecting migration flows to secure the national healthcare workforce. In view of the complexity of the global market for medical labour, and the range of different institutional and individual interests in play, the presumption that return-migration of skilled professionals to African countries with falling life expectancies would be possible to regulate looks unwarranted.

Consequences of Muddled Models The mistake of linking poor population health outcomes directly to the migration of African-trained professionals lent weight to the human interest story of doctors and nurses emigrating to practise elsewhere.73 The oversimplified attribution of healthcare

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professionals’ migration as causing collapsing life expectancy rates ignores the complex processes around the creation of health in a global market where health expertise is commodified. In presenting an oversimplified version of complex causative relations, global policy institutions – such as the WHO and the Joint Learning Initiative – were engaged in an exercise of persuasion, linking an intractable public health problem to a human story. Linking poor health outcomes with medics’ international mobility was a persuasive and compelling story. Furthermore, the story had the added benefit of laying some responsibility for poor life expectancy in sub-Saharan Africa on those rich countries that recruited professionals and benefited from their training. While the story was persuasive, and taken up by prestigious and progressive organisations, it did not in the end give rise to effective or sustainable improvements in the regulation of the international medical labour market. Attributing the cause of falling life expectancy to the emigration of skilled health professionals in sub-Saharan Africa ignored underlying variables that might explain both emigration and poor public health, an omission that was compounded by proposals to ‘fix’ the problem by restricting or otherwise regulating migration. The proposals relied upon an idea of the universal and transferable nature of medical knowledge and practice, plus a limited view of migrants as a mobile resource, responding to economic exigencies and with moral obligations to their place of origin, rather than as agents with complex motivations and rights to self-determination.74 International policy-making on migration has suffered from the ‘silos’ problem whereby each particular interest (trade, labour, security) works towards its own goals, which may be different or even incompatible with one another.75 For instance, the UK’s NHS has never had a nationally sustainable workforce, having always relied on skilled immigrant labour to staff positions that locally trained physicians and nurses were unwilling to take on. Failure to acknowledge the role of skilled and unskilled immigrant labour and the disadvantages that it suffered allowed racialised hierarchies to emerge in the NHS. While essential to the provision of healthcare, immigrant workers’ access to the labour market has been limited by immigration law and language tests.76 At the same time, professional solidarity discouraged immigrant doctors and nurses from complaining, despite evident discrepancies in their employment status and income.77 The occluded nature of immigrant professionals’ work allowed their role in creating the NHS through the twentieth century to be underplayed and perpetuated the notion of healthcare provision as a stable contract between the citizen population and state, within a bounded national setting.78 Connections between migration and medical work remain under-interrogated; the inappropriately simplified models in the 2006 WHO report were not challenged. The transformation of the international mobility of healthcare professionals from a problem of securing sufficient manpower to blame for serious global public health problems can be seen as a result of a poorly supported model that was not critically questioned. Viewing international migrant medics ‘as the main culprit behind’ the ‘global health workforce crisis’ has now been recognised as inappropriate.79 The shortage of skilled

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healthcare staff in developing countries goes beyond the issue of emigration. In recent years, WHO annual reports have focused on healthcare systems and universal coverage, avoiding the inappropriate emphasis on staff as the key element in rendering populations healthy. Health professionals migrating from poor to rich countries already face significant barriers in terms of migration law and professional gate-keeping. The efforts to regulate medical recruitment in the name of public health may have added a moral disincentive to emigrate, but have not ultimately reduced global mobility. The focus on regulating immigration from sub-Saharan Africa in the early twenty-first century has served to distract from other aspects of the global medical labour market, including discrimination and highly differentiated access to more privileged forms of employment, and consequent racialised stratification. Models that failed to consider socioeconomic precedents of collapsing life expectancy rates in the analysis of global healthcare staff shortages, and disregarded rights to freedom of movement of individual professionals as well as the interests of capital, have justified a world-wide tightening-up of migration regulation. These changes have had tangible benefit neither for poor countries, nor for migrant professionals from those countries. The poor modelling of a problem may not have made the situation worse, but the intense effort to restrict and regulate mobility into the rich world looks, with the benefit of hindsight, like yet another case of victim blaming. Public health is an inherently multi-disciplinary enterprise, engaged with a range of agents, institutions and epistemologies. Unfortunately, narrowly biomedical definitions of health and healthcare have prevailed at key moments in global public health agenda setting. A renewed commitment to interdisciplinary work with critical approaches that interrogate all the available evidence is warranted.

Further Reading Hannah Bradby, ‘International Medical Migration: A Critical Conceptual Review of the Global Movements of Doctors and Nurses’, Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 18 (2014), pp. 580–96. Michael A. Clemens, Do Visas Kill? Health Effects of African Health Professional Emigration, Working Paper (Washington, DC: Centre for Global Development, March 2007), p. 56 (accessed 12 January 2010). J. Connell, Migration and the Globalisation of Health Care (Cheltenham: Edward Elgar, 2010). Oscar Gish, Doctor Migration and World Health: The Impact of the International Demand for Doctors on Health Services in Developing Countries, Occasional Papers on Social Administration (London: G. Bell & Sons, 1971), p. xliii. Maureen Mackintosh, Parvati Raghuram and Leroi Henry, ‘ “A Perverse Subsidy”: AfricanTrained Doctors and Nurses in the National Health Service’, Soundings 34 (2006), pp. 103–13. Parvati Raghuram, ‘Caring about “Brain Drain”: Migration in a Postcolonial World’, Geoforum 40 (2009), pp. 25–33.

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Notes 1. This chapter draws on work conducted while the author was the medical diversity fellow at the Max Planck Institute for the Study of Religious and Ethnic Diversity, Göttingen, Germany, courtesy of Dr Kristine Krause, and first published as a working paper (accessed 31 May 2015). 2. Iona Heath (to become, shortly after the time of writing, president of the Royal College of General Practitioners), ‘Exploitation and Apology’, British Medical Journal 334 (2007), p. 981. 3. Joint Learning Initiative, Human Resources for Health: Overcoming the Crisis (Cambridge, MA: Harvard University Press, 2004) ; WHO, Working Together for Health: The World Health Report 2006 (Geneva: World Health Organisation, 2006) (accessed 14 July 2015). 4. Annamaria Carusi, ‘Modelling Systems Biomedicine: Intertwinement and the “Real” ’, in this volume, pp. 50–65. 5. Hannah Bradby, ‘Racism, Ethnicity, Health and Society’, in eLS (Chichester: John Wiley and Sons, 2012) (accessed 14 July 2015). 6. Collins O. Airhihenbuwa, Healing Our Differences: The Crisis of Global Health and the Politics of Identity (Lanham: Rowman & Littlefield, 2007). 7. Herbert Ekwe-Ekwe, ‘What Exactly Does “Sub-Sahara Africa” Mean?’, Pambazuka News (18 January 2012) (accessed 12 July 2015). 8. Alfonso Mejia, ‘International Migration of Professional Health Manpower’, in Health Manpower Planning (Geneva: World Health Organisation, 1978), pp. 255–76. 9. Parvati Raghuram, ‘Caring about “Brain Drain” Migration in a Postcolonial World’, Geoforum 40 (2009), pp. 25–33. 10. John Connell, Migration and the Globalisation of Health Care (Cheltenham: Edward Elgar, 2010). 11. Alvaro Alonso Garbayo, James Campbell and Tania Nakari, ‘Value for Money, Sustainability and Accountability in Health: A New Governance Framework for Africa Towards and Beyond the MDGs’ (presented at the Conference of Ministers of Health and Ministers of Finance, Global Health Workforce Alliance, 2012). 12. Michael A. Clemens and Gunilla Pettersson, ‘New Data on African Health Professionals Abroad’, Human Resources for Health 6.1 (2008) (accessed 31 May 2015). 13. Robyn Iredale, ‘The Migration of Professionals: Theories and Typologies’, International Migration 39 (2001), pp. 7–26 (accessed 31 May 2015). 14. Tim Martineau, Karola Decker and Peter Bundred, ‘ “Brain Drain” of Health Professionals: From Rhetoric to Responsible Action’, Health Policy 70 (2004), pp. 1–10 (accessed 31 May 2015). 15. Biswamoy Pati and Mark Harrison, Health, Medicine and Empire: Perspectives on Colonial India, New Perspectives in South Asian History 1 (London: Sangam, 2001); Roy MacLeod and Milton Lewis, Disease, Medicine and Empire: Perspectives on Western Medicine and the Experience of European Expansion (London: Routledge, 1988).

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16. Oscar Gish, Doctor Migration and World Health: The Impact of the International Demand for Doctors on Health Services in Developing Countries, Occasional Papers on Social Administration (London: G. Bell & Sons, 1971), p. xliii. 17. Stephen Castles and Mark J. Miller, The Age of Migration: International Population Movements in the Modern World, 4th edn (New York: Guilford Press, 2009). 18. Vaughan Robinson and Malcolm Carey, ‘Peopling Skilled International Migration: Indian Doctors in the UK’, International Migration 38 (2000), pp. 89–108 (accessed 31 May 2015). 19. David Wright, Nathan Flis and Mona Gupta, ‘The “Brain Drain” of Physicians: Historical Antecedents to an Ethical Debate, c. 1960-79’, Philosophy, Ethics, and Humanities in Medicine 3 (2008), p. 24. 20. Emma L. Jones and Stephanie J. Snow, Against the Odds: Black and Minority Ethnic Clinicians and Manchester 1948–2009 (Lancaster: Carnegie, 2010); Julian M. Simpson, Aneez Esmail, Virinder S. Kalra and Stephanie J. Snow, ‘Writing Migrants Back into NHS History: Addressing a “Collective Amnesia” and its Policy Implications’, Journal of the Royal Society of Medicine 103 (2010), pp. 392–6; Joanna Bornat, Leroi Henry and Parvati Raghuram, ‘Overseas-Trained South Asian Doctors and the Development of Geriatric Medicine’, Generations Review 18 (2008). 21. Christopher Kyriakides and Satnam Virdee, ‘Migrant Labour, Racism and the British National Health Service’, Ethnicity and Health 8 (2003), pp. 283–305. 22. Gish, Doctor Migration and World Health, p. xliii. 23. Aneez Esmail, ‘Asian Doctors in the NHS: Service and Betrayal’, British Journal of General Practice 57 (2007), pp. 827–34. 24. Gish, Doctor Migration and World Health, pp. xliii, 12. 25. E. Sylvester Vizi, ‘Reversing the Brain Drain from Eastern European Countries: The “Push” and “Pull” Factors’, Technology in Society 15 (1993), pp. 101–9 (accessed 31 May 2015). 26. Wright, Flis and Gupta, ‘The “Brain Drain” of Physicians’. 27. F. J. van Hoek, The Migration of High Level Manpower from Developing to Developed Countries (The Hague: Mouton, 1970); Omar B. Ahmad, ‘Managing Medical Migration from Poor Countries’, British Medical Journal 331 (2005), pp. 43–5; Committee on the International Migration of Talent, The International Migration of High-Level Manpower: Its Impact on the Development Process (New York: Praeger, 1970); Organisation for Economic Cooperation and Development (OECD), International Migration of Health Workers: Improving International Cooperation to Address the Global Health Workforce Crisis, 2010 (accessed 15 July 2015). 28. WHO, Working Together for Health, 2006. 29. Jonathan Crush, Abel Chikanda and Wade Pendleton, ‘The Disengagement of the South African Medical Diaspora in Canada’, Journal of Southern African Studies 38 (2012), pp. 927–49 (accessed 31 May 2015). 30. Wright, Flis and Gupta, ‘The “Brain Drain” of Physicians’. 31. Kwadwo Mensah, Maureen Mackintosh and Leroi Henry, The ‘Skills Drain’ of Health Professionals from the Developing World: A Framework for Policy Formulation (London: Medact, 2005). 32. John Connell, A Global Health System? The International Migration of Health Workers (New York: Routledge, 2008). 33. Clemens and Pettersson, ‘New Data on African Health Professionals Abroad’.

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34. Joint Learning Initiative, Human Resources for Health, pp. 18–19. 35. Celia W. Dugger, ‘An Exodus of African Nurses Puts Infants and the Ill in Peril’, New York Times, 12 July 2004 (accessed 15 July 2015). 36. E. Lizi, J. Lwanda and H. Matiti, ‘Modern Medical Myth: “More Doctors in Manchester than in Malawi”: A Preliminary Communication’, Malawi Medical Journal, 2013 (accessed 15 July 2015). 37. Joint Learning Initiative, Human Resources for Health; WHO, Working Together for Health. See also the BBC article at (accessed 14 July 2015). 38. WHO, Working Together for Health, p. xv. 39. Sudhir Anand and Till Bärnighausen, ‘Human Resources and Health Outcomes: A CrossCountry Econometric Study’, Lancet 364 (2004), pp. 1603–9. 40. Hannah Bradby, ‘International Medical Migration: A Critical Conceptual Review of the Global Movements of Doctors and Nurses’, Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 18 (2014), pp. 580–96 (accessed 31 May 2015). 41. Anand and Bärnighausen, ‘Human Resources and Health Outcomes’. 42. Kwangkee Kim and Philip M. Moody, ‘More Resources Better Health? A Cross-National Perspective’, Social Science & Medicine 34 (1992), pp. 837–42. 43. Erica Hertz, James R. Hebert and Joan Landon, ‘Social and Environmental Factors and Life Expectancy, Infant Mortality, and Maternal Mortality Rates: Results of a CrossNational Comparison’, Social Science & Medicine 39 (1994), pp. 105–14. 44. Kim and Moody, ‘More Resources Better Health?’; Jane Robinson and Heather Wharrad, ‘The Relationship between Attendance at Birth and Maternal Mortality Rates: An Exploration of United Nations’ Data Sets Including the Ratios of Physicians and Nurses to Population, GNP per Capita and Female Literacy’, Journal of Advanced Nursing 34 (2001), pp. 445–55; Jane Robinson and Heather Wharrad, ‘Invisible Nursing: Exploring Health Outcomes at a Global Level – Relationships Between Infant and Under-5 Mortality Rates and the Distribution of Health Professionals, GNP per Capita, and Female Literacy’, Journal of Advanced Nursing 32 (2000), pp. 28–40. 45. Margaret E. Kruk, Marta R. Prescott, Helen de Pinho and Sandro Galea, ‘Are Doctors and Nurses Associated with Coverage of Essential Health Services in Developing Countries? A Cross-Sectional Study’, Human Resources for Health 7 (2009), pp. 1–9. 46. Anand and Bärnighausen, ‘Human Resources and Health Outcomes’, p. 1063. 47. Hirori Onuki, ‘The Global Migration of Care Labour. Filipino Workers in Japan’, in Rianne Mahon and Fiona Robinson (eds), Feminist Ethics and Social Policy: Towards a New Global Political Economy of Care (Vancouver and Toronto: UBC Press, 2011), pp. 60–74. 48. Norman Daniels, Just Health: Meeting Health Needs Fairly (New York: Cambridge University Press, 2008). 49. Abel Chikanda, Medical Leave: The Exodus of Health Professionals from Zimbabwe, Migration Policy series no. 34 (2005), pp. 1–37 (accessed 14 July 2015). 50. Peter Conrad, ‘The Shifting Engines of Medicalization’, Journal of Health and Social Behavior 46 (2005), pp. 3–14. 51. WHO, Working Together for Health, p. 150.

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52. Joanna Bornat, Leroi Henry and Parvati Raghuram, ‘ “Don’t Mix Race with the Specialty”: Interviewing South Asian Overseas-Trained Geriatricians’, Oral History Journal 37 (2009), pp. 74–84. 53. Tikki Pang, Mary Ann Lansang and Andy Haines, ‘Brain Drain and Health Professionals: A Global Problem Needs Global Solutions’, British Medical Journal 324 (2002), pp. 499–500. 54. Donald Lien and Yan Wang, ‘Brain Drain or Brain Gain: A Revisit’, Journal of Population Economics 18 (2005), pp. 153–63 (p. 154). 55. Michael Peter Smith and Adrian Favell, The Human Face of Global Mobility: International Highly Skilled Migration in Europe, North America and the Asia–Pacific, Comparative Urban and Community Research 8 (New Brunswick, NJ, and London: Transaction Publishers, 2006). 56. Denis Campbell, Haroon Siddique, Ashley Kirk and James Meikle, ‘NHS Hires up to 3,000 Foreign-Trained Doctors in a Year to Plug Staff Shortage’, The Guardian, 28 January 2015 (accessed 14 July 2015). 57. John Aggergaard Larsen, Helen T Allan, Karen Bryan and Pam Smith, ‘Overseas Nurses’ Motivations for Working in the UK: Globalization and Life Politics’, Work Employment and Society 19 (2005), pp. 349–68. 58. Connell, Migration and the Globalisation of Health Care. 59. Smith and Favell, The Human Face of Global Mobility. 60. WHO, Working Together for Health. 61. Maureen Mackintosh, Kwadwo Mensah, Leroi Henry and Michael Rowson, ‘Aid, Restitution and International Fiscal Redistribution in Health Care: Implications of Health Professionals’ Migration’, Journal of International Development 18 (2006), pp. 757–70 (accessed 31 May 2015). 62. Michael A. Clemens, ‘A World without Borders Makes Economic Sense’, The Guardian – Poverty Matters Blog, 2011 (accessed 20 September 2010). 63. Kwadwo Mensah, ‘International Migration of Health Care Staff: Extent and Policy Responses with Illustrations from Ghana’, in Meri Koivusalo and Maureen Mackintosh (eds), Commercialization of Health Care: Global and Local Dynamics and Policy Responses (Basingstoke: Palgrave Macmillan, 2005), pp. 201–15. 64. Eilish McAuliffe, Ogenna Manafa, Cameron Bowie, Lucy Makoae, Fresier Masako, Mamello Moleli and David Hevey, ‘Managing and Motivating: Pragmatic Solutions to the Brain Drain’, in Human Resources in Healthcare, Health Informatics and Healthcare Systems (IGI Global, 2011), pp. 79–95 (accessed 14 July 2015). 65. Juli L. Finlay, Rodney A. Crutcher and Neil Drummond, ‘ “Garang’s Seeds”: Influences on the Return of Sudanese–Canadian Refugee Physicians to Post-Conflict South Sudan’, Journal of Refugee Studies 24 (2011), pp. 187–206 (accessed 31 May 2015). 66. Raghuram, ‘Caring about “Brain Drain” Migration in a Postcolonial World’. 67. Connell, Migration and the Globalisation of Health Care. 68. Finlay et al., ‘ “Garang’s Seeds” ’. 69. Sabine Alkire and Lincoln Chen, ‘ “Medical Exceptionalism” in International Migration: Should Doctors and Nurses Be Treated Differently?’, in Kristof Tamas and Joakim Palme

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71. 72.

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(eds), Globalizing Migration Regimes: New Challenges to Transnational Cooperation (Aldershot: Ashgate, 2006), pp. 100–17. Vijay Govindarajan and Ravi Ramamurti, ‘India’s Secret to Low-Cost Health Care’, HBR Blog Network (Harvard Business Review, 15 October 2013) (accessed 14 July 2015). McAuliffe et al., ‘Managing and Motivating’. Mike Callaghan, Nathan Ford and Helen Schneider, ‘A Systematic Review of Task-Shifting for HIV Treatment and Care in Africa’, Human Resources for Health 8 (2010); Noreen Dadirai Mdege, Stanley Chindove and Ali Shehzad, ‘The Effectiveness and Cost Implications of Task-Shifting in the Delivery of Antiretroviral Therapy to HIV-Infected Patients: A Systematic Review’, Health Policy Planning 28 (2012), pp. 223–36 (accessed 31 May 2015). Nick Triggle, ‘Africa Reels from Loss of Doctors’, BBC, 27 June 2005 (accessed 17 December 2014). A. Akram Sayeed, In the Shadow of My Taqdir (Stanhope: Memoir Club, 2006); Savitri Chowdhary, I Made My Home in England (Laindon, Essex: Grant–Best, 1954). Cathy Zimmerman, Ligia Kiss and Mazeda Hossain, ‘Migration and Health: A Framework for 21st Century Policy-Making’, PLoS Medicine 8 (2011), e1001034. Julian M. Simpson, ‘Diagnosing a Flight from Care: Medical Migration and “Dirty Work” in the NHS’, History and Policy (King’s College and University of Cambridge, 8 December 2014) (accessed 4 January 2016). Kyriakides and Virdee, ‘Migrant Labour, Racism and the British National Health Service’; Lorraine Culley and Simon Dyson, Ethnicity and Nursing Practice (Houndmills: Palgrave, 2001). Bornat, Henry and Raghuram, ‘Overseas-Trained South Asian Doctors and the Development of Geriatric Medicine’; Parvati Raghuram, Joanna Bornat and Leroi Henry, ‘The CoMarking of Aged Bodies and Migrant Bodies: Migrant Workers’ Contribution to Geriatric Medicine in the UK’, Sociology of Health and Illness 33 (2011), pp. 321–35; Simpson et al., Writing Migrants Back into NHS History’; Jones and Snow, Against the Odds. OECD, International Migration of Health Workers, p. 1.

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29 LANGUAGE MATTERS: ‘COUNSEL’ IN EARLY MODERN AND MODERN MEDICINE Ian Sabroe and Phil Withington

I rancis Bacon is famous today as one of the founding fathers of the so-called ‘scientific revolution’ of the seventeenth century. Although not an especially successful scientist himself, he was nevertheless the most eloquent and influential spokesperson for an approach to knowledge that promised to transform human understanding of both humanity and its relationship with the natural and social worlds.1 The central features of this approach, as they emerged in Bacon’s own writings and the work of his protégés and associates after 1605, are equally well known. They include the importance of experiment, observation, and a sceptical attitude towards inherited wisdom (from the ‘ancients’ in general and Aristotle in particular).2 They also required a commitment to learning how things worked and how they could be controlled, improved and exploited for ‘the benefit of mankind’. It was under these auspices that William Harvey proceeded to demonstrate, a few years later, that blood circulated around the body, that Thomas Hobbes (a close friend of Bacon) arrived at the first social scientific theory of the state, and that Robert Boyle and the Royal Society undertook a programme of scientific investigation and patronage that cumulatively laid the foundations of modern scientific practice and knowledge.3 Historians have learned not to take Bacon’s observations at face value – this was, after all, a self-interested and self-promoting public man, who was keen at once to distinguish himself from his peers and to secure royal patronage.4 As with Hobbes, it was also the agenda of someone entirely immersed in the culture of learning he chose to dismiss.5 But from the perspective of the twenty-first century his claims are prescient – and, we think, deeply relevant – because in calling for an experimental, observational, materialistic and sceptical science, Bacon depicted the culture of Renaissance humanism that had dominated European culture since the late fifteenth century as a ‘disease or distemper of learning’. In his first and foundational

F

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text, Advancement of Learning, Bacon claimed that, since the generation of Martin Luther and Desiderius Erasmus, an affectionate study of eloquence, and copy of speech . . . then began to flourish. This grew speedily to an excess: for men began to hunt more after words, than matter, and more after the choiceness of the Phrase, and the round and clean composition of the sentence, and the sweet falling of the clauses, and the varying and illustration of their works with tropes and figures: then after the weight of matter, worth of subject, soundness of argument, life of invention, or depth of judgement.6 As Bacon put it, ‘In sum, the whole inclination and bent of those times, was rather towards copy, than weight . . . when men study words, and not matter.’ For Bacon this was learning as ‘vanity . . . for words are but the Images of matter, and except they have life of reason and invention: to fall in love with them, is all one, as to fall in love with a Picture’.7 This sharp distinction between Renaissance learning as language-obsessed ‘vanity’ and modern learning as empirical ‘matter’ and ‘weight’ jangles, we think, a few contemporary bells – not least the gap between medicine and humanities that ‘medical humanities’ seeks to bridge. The point we want to make here is that Bacon’s polemical separation of humanism and science – and the subsequent divergence in intellectual life it precipitated – has caused harm as well as good: that by making materialism and experiment antithetical to language and conversation, Bacon unnecessarily threw the linguistic baby out with the bath water. This chapter is accordingly predicated on the insight that, now more than ever, attention needs to be paid to the languages of medicine and health – and how people use them in conversation and debate – as well as the physiological and neurological processes that constitute the body. This is true for contemporary medicine and the almost endemic communicative dissonance it displays: between the language of doctors or nurses and different sorts of patients; between administrators and politicians, journalists and policy advisors; between practitioners of different academic disciplines. But it is also true for the changing semantics of medical discourses historically: how the terms and ideas that have structured conversations and assumptions about health at particular moments in the past can reveal the continuities and disruptions in the values and practices that characterise healing in the present. Meeting this agenda requires a multi-disciplinary approach to discourses of healing that identifies the long and often complicated genealogy of terms integral to the practice of public medicine and compares and contrasts the use of the same words and their inferences among, for example, contemporary medical professionals and their patients. Clearly, this is beyond the scope of the present chapter. Instead we combine the perspectives of a historian of early modern culture and a modern clinician to do two things. Firstly, we point to a burgeoning tradition of early modern historical

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semantics that, with the help of digital technology, can now identify and recover historical lexicons of health – that is, recover the coinage, usage and meanings of words and vocabularies that framed and structured attitudes towards healing in the past, and which may have been lost to the present.8 Secondly, we offer reflections from the coalface of the clinic as to why and how language matters in the relationship between doctor and patient, and ask whether the burgeoning tradition of historical semantics has anything to say to the delivery of care by clinicians: practical people working in time-poor and sometimes resource-limited environments.9 Our particular focus in both respects is the term counsel – a concept of especial significance at the time Bacon issued his scientific manifesto and one that offers, we think, a suggestive perspective on clinical practice today. This is because it was a term that reflected on discursive practice itself: not least how doctors and patients could and should talk to each other in order to achieve the best diagnostic decisions. The first half of this chapter accordingly explores the meaning of ‘counsel’ in Renaissance humanist discourse by looking at its appearance and application in vernacular medical treatises during the later sixteenth and seventeenth centuries. This initial survey suggests that counsel was an important and subtle paradigm for preBaconian medical writers working within the Galenic methodology privileged by Renaissance medical humanism. In particular, it is a term that reveals the diagnostic significance that medical writers accorded talking and listening.10 The second half of the chapter jumps forward in time to consider counsel as conceived and understood from the contemporary perspective of a professional clinician with expertise in lung disease. Taking the form of a personal and philosophical reflection on the practice of medicine, this section argues that modern medicine has succumbed to the priorities of Bacon in too many ways; or, to put it slightly differently, that the conversational aspects of Renaissance medicine invoked by the term ‘counsel’ should give modern practitioners pause for thought. This pairing identifies intriguing parallels between ‘early modern’ and ‘postmodern’ medical culture. Just as both eras witnessed enormous transformations and flux in the state of medical knowledge, so new technologies of communication widened popular access to and awareness of medical issues (for the internet and its host of selfhelp sites in the twenty-first century, see the printing press and the emergence of the vernacular medical advice book in the sixteenth century).11 The same issues of gaining and weighing counsel when in distress with illness are present now as they were then. In such circumstances the professional practitioner’s voice – be it pre-Bacon physician or post-Bacon clinician – is one among many, and must speak to patients who possess varying and potentially conflicting degrees of awareness and knowledge. By insisting that language and communication matters to medicine in the past and the present, the chapter points to what we regard to be the implicit tension between the critical world of medical humanities and the applied world of medical practice. The chapter was written, that is, with clinical as well as critical questions in mind, and with the aim of enriching both.

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II Medical knowledge in the sixteenth and seventeenth centuries underwent two related but also distinct transformations.12 Firstly, under the broad intellectual movement of Renaissance humanism, the learning of the ancients – in particular Hippocrates, Galen and Arabic authorities – was recovered and, as importantly, translated for vernacular audiences across Europe. The organising paradigm for this knowledge was the humoural body, by which bodily and mental health essentially involved keeping the humours and complexions – and the organs associated with them – in healthy equilibrium and good working order: through preventative and holistic measures like diet, environment, lifestyle and good sociability, and more interventionist actions like prescribed medicines and forms of induced purgation (for example, bloodletting and vomiting). It was in these latter arts in particular that physicians earned their keep: as experts in which medicine or purgation to use and when. Secondly, one offshoot of this intense dialogue with ancient medical authorities was the emergence of new kinds of learning – in particular an experimental and observational science based on anatomy and chemistry that first developed in Italy, Germany and continental Europe, and reached English educated elites by the seventeenth century. It is important to emphasise that, throughout the period, Galenic medicine remained orthodox and ‘popular’ – much of this new learning was Latinate and did not impact on everyday medical reading and practice. When local practitioners adapted it, it tended to merge with existing curatives. In the long term, however, the experiments of Harvey and others were to prove the basis of Enlightenment and Victorian medical advances. A third point worth mentioning is that while early modern medicine was certainly a distinct ‘field’, with specialist and licensed practitioners jealous of their expertise, it was nevertheless institutionally segmented and competitive in terms of healing options – so much so that historians talk of an early modern ‘marketplace’.13 This included the university-educated physicians (organised into their College) and the guild-based Barber Surgeons (specialising in internal work and bones) and Apothecaries (who made the distillations and curatives). All three were incorporated bodies of practitioners that were energetic in protecting their respective areas of practice. But healers also included peripherals, amateurs and unlicensed marginal healers: astrologers, ‘wise-women’, witches, ministers, travelling ‘quacks’ and individual householders who took an advanced interest in the subject.14 This is the context for appreciating the rise of the vernacular medical treatise during the sixteenth century. Commercially, these medical ‘how to’ books reflected the need of publishers to create new, popular, printed genres to appeal to the burgeoning reading public.15 Ideologically, they were consistent with the Renaissance humanist agenda both to translate and to disseminate Classical knowledge in the vernacular and to inculcate a culture of autodidactism, whereby audiences beyond the traditional educated elite could teach themselves and respective households useful knowledge and skills: in this case, basic medical principles; symptoms and their likely causes; the

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properties of foods, drinks and herbs; and appropriate diets and curatives.16 Emblematic in this respect was the foundational text of vernacular Renaissance medicine, Thomas Elyot’s The Castle of Health (1539).17 Elyot was a government official and Justice of the Peace under Henry VIII, who, as part of a generation of humanists following Thomas More, also published a variety of ‘how to’ books with these ostensible ends in mind (his Castle was a bestseller alongside the equally important The Book Named the Governor, in which he propagated a humanist vision of public citizenship and education).18 Through these and other publications Elyot had much more of an impact on English public life than his service in government ever did, in the process establishing a tradition of self-help manuals – medical treatises foremost among them – that remained a publishing staple well into the eighteenth century.19 Indeed, after its first publication in 1539, Elyot’s Castle went through at least seventeen editions and was still coming off the presses as late as 1610. As the foundational text of the vernacular medical humanism, Elyot’s Castle is the main focus for this section of the chapter, but before turning to Elyot we first need to consider the word ‘counsel’ itself. This was an old and paradigmatic term of primarily political discourse that had its antecedents in the Middle English conseil, in AngloFrench (Norman) counseil, and in the Latin consilium. The noun carried a bunch of overlapping connotations that did not change markedly during the early modern period. As the Oxford English Dictionary amply demonstrates, the noun ‘counsel’ could mean interchanges of opinion over matters of procedure; conference and conversation; opinion based on consultation; judgement, prudence and sagacity (in a positive sense) or secrecy and design (in a negative sense); and it could be institutionalised in an assembly of advisors (such as the royal Privy Council), a single advisor, or legal advisors. The verb in turn described the communicative act/s involved in these kinds of exchange and institution.20 While by no means a term particular to Renaissance humanism, humanists were nevertheless extremely energetic in privileging and theorising the concept, not least because they envisaged their main practical role in polities to be that of counsellor. Indeed, what many regard to be the seminal text of the English Renaissance, Thomas More’s Utopia (first published in Latin in 1516 and eventually translated into English in 1551) was first and foremost a prolonged meditation on counsel. Book One centres on the nature of good counsel, the possibilities of constructively advising corrupt or aggrandising princes, the responsibilities (or not) of learned men to take the role of counsellor, the dangers of flattery and bad counsel, and the most effective ways of getting good and honest counsel heard.21 Book Two is, in turn, a playful but nevertheless serious exercise in providing counsel through fictional means – that is, by invoking for the reader the customs and practices of a well-governed and equitable commonwealth called ‘Utopia’, or ‘No Place’. Nor was counsel an esoteric term used only by an intellectual elite. Figure 29.1 points to the prominence of ‘counsel’ and its variants in early modern English print culture. Utilising the database Early English Books Online (EEBO), which catalogues the majority of surviving vernacular printed texts from the sixteenth and seventeenth

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Figure 29.1 Number of appearances of ‘counsel’ in printed texts, 1473–1700. Author’s own table.

centuries and currently enables keyword searching of about 70% of them, it shows the number of times that ‘counsel’ was used in all searchable text per decade.22 The figures are extremely crude: the search is not comprehensive and the context for and meaning of each use of the term is, of course, unexplored. But it nevertheless provides a very basic index of counsel’s print visibility over time. This is high, the word appearing 194 times in the 1500s, 4202 in the 1550s, 14,037 in the 1600s and 29,197 in the 1650s, dipping back to 13,728 appearances in the 1690s. Of course, this pattern in part reflects the significant increases in the amount of printed material over the same period. Figure 29.2 accordingly shows the percentage of all searchable EEBO texts with counsel appearing in them. It also compares that percentage with that of another important Renaissance word like ‘happiness’, in order to give some sense of the relative visibility of counsel.23 We can see that while happiness became more prominent over the course of the period (an interesting story in itself), reaching almost 11 per cent by the 1690s, counsel was prominent from the start, rose to 20 per cent by the 1560s, and peaked at a remarkable 23 per cent of all catalogued and searchable texts in the 1580s and 1600s. Thereafter, however, there was a gradual decline in usage so that, by 1700, counsel and happiness were more or less comparable in terms of their appearance in print.

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Figure 29.2 Percentage of printed texts containing ‘counsel’ or ‘happiness’ compared, 1473–1700. Author’s own table.

Figure 29.3 provides, finally, a slightly more calibrated account of the same patterns, showing the percentage of printed title pages upon which counsel or happiness appears over the course of the period. Although it should be emphasised that this remains a very crude mode of measurement, title pages have two advantages over the aggregate counts in Figures 29.1 and 29.2. Firstly, title page searches are currently more reliable and comprehensive than full text searches. Secondly, the use of a word on a title page is arguably more indicative of that word’s wider cultural purchase because the title page was, by definition, intended to advertise the text to potential readers; audiences had to recognise the words and know what they meant. With this in mind, Figure 29.3 shows two things: that counsel was much more visible than happiness until the 1690s, when the terms effectively swap places; and that counsel was especially prominent from the 1550s, when it adorned as many as 3 per cent of all title pages, to the 1620s, when it began gradually to slip from sight. The data suggest, then, that the heyday of counsel coincided more or less exactly with the zenith of the English Renaissance. This heyday was very much related to counsel’s importance in political and religious discourse, two subjects that dominated the print culture of the period. That Renaissance politics and religion were understood through the prism of counsel would not be surprising to historians. On the contrary, it is nicely indicative of what we now know to be the participatory, communicative and conciliar nature of public life under the Tudors.24 What, though, did counsel’s heyday

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Figure 29.3 Percentage of printed title pages with ‘counsel’ or ‘happiness’ compared, 1473–1700. Author’s own table. have to do with Renaissance medicine? The simple answer is that this quintessential term of Renaissance political culture was also the paradigm by which humanist writers understood the nature of medical practice: that human bodies, like social and political bodies, were kept healthy by good, learned and honest counsel. Elyot’s Castle of Good Health is a case in point. Here the term ‘counsel’ and its variants brought the reader into conversation with at least three kinds of authoritative and advisory voice. In the first instance, counsel emanated from the ancients – the wise sentences of dead authors that were made alive and present by the mediation of Elyot, whose own counsel was often difficult to separate from theirs.25 When advising his readers on ‘Times in Day Concerning Meals’, he warned that ‘here I will not recite the sentences of authors, which had never experience of English men’s natures, or of the just temperature of this realm of England.’ Instead ‘only this counsel of Hippocrates shall be sufficient’ (and he then referenced ‘Hipocrat. aphor. 13. lib. 1. Galen. de tuend. San’).26 When describing the procedures for ‘scarifying’, or letting blood, Elyot ventriloquised Galen, noting that For as much as it is not convenient, to be let blood often times in the year, because much of the vital spirit passes forth with the blood . . . . I therefore do counsel (says Galen) that the base parts of the body, as the legs, be scarified, which is the most sure remedy, as well in concerning health as in repairing thereof, being decayed.27

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But it was not simply ancient medical authorities that Elyot ventriloquised. Turning to the serious problem of ‘heaviness of mind’, Elyot observed that ‘This is so puissant [powerful] an enemy to nature and bodily health, that to resist the malice and violence thereof, are required remedies, as well of the wholesome counsels found in holy scripture & in the books of moral doctrine.’ Combining their counsel with knowledge of ‘certain herbs, fruits, and spices, having the property to expel melancholy humours, and to comfort and keep lively the spirits’, he proceeded to ‘declare some remedies against sorrowfulness of heart, concerning necessary counsels’.28 While the counsel of the ancients tended to be unidirectional – in that the reader was the recipient of authoritative opinion rather than an active conversationalist in their own right – audiences were nevertheless encouraged to be creative recipients who would thereafter be informed and prepared for subsequent conversations and counsels. As Elyot explained when discussing ‘The dominion of sundry complexions’, It seems to me not inconvenient, that I do declare as well the counsels of ancient & approved authors, as also mine own opinion gathered by diligent marking in daily experience . . . leaving the residue unto the substantial learning and circumspect practice of good physicians, which shall the more easily cure their patients, if their patients do not disdain to bear away and follow my counsels.29 This passage points, in turn, to the two other sources of counsel available to readers: the author of the handbook, who through experiment, observation and reading was now qualified to counsel the reader as ‘I’; and ‘good physicians’ – learned men whom for Elyot took on the same counselling role for the human body that humanists did for the commonwealth. Certainly, Elyot was not shy in referring to his own advice as counsel. To ‘they in whom is abundance of humours corrupted, or be much diseased with crudity in the stomach and veins, those do I counsel, to abstain from the exercise of the voice, lest much corrupted juice or vapours, may thereby be into all the body distributed.’30 Considering different forms ‘of purgation’, Elyot reassured the reader that ‘I will now set forth some counsels, concerning that matter, which I have collected out of the chief authors of physic’; continuing with the problem of melancholy, he promised to leave ‘moral philosophy’ and now ‘write somewhat touching the counsel of physic’; regarding diet, ‘I would, that the readers should have in remembrance these two counsels . . .’.31 To the physician Elyot left more technical matters and dangerous cures that moved beyond the mainly preventative. He explained that ‘They which will take sharper purgations, or compound with divers things, let them take the counsel of an honest and perfect physician.’32 Likewise, for more difficult cures, Elyot was quick to ‘remit the readers to the counsel of discrete physicians’.33 But this did not mean that patients should just surrender themselves to the power of experts. On the contrary, the whole point of the author’s counsel was ‘for the patient to have in a readiness, to the intent, that whatsoever he feels or perceives in every of the said thing thereof to instruct his

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physician, whereunto he may adapt his counsel and remedies’. And it was with this sense of arming the patient to engage in conversation with the counsellor–physician that Elyot concluded the book: Thus make I an end of this treatise, desiring them that shall take profit thereby, to defend it against envious disdain, on whom I have set the adventure for the love that I bear to my country: requiring all honest physicians to remember, that the intent to my labour was that men and women reading this work, and observing the counsels therein, should adapt thereby their bodies, to receive more sure remedy by the medicines prepared by good physicians in dangerous sicknesses, they keeping good diet, and informing diligently the same physicians, of the manner of their affects, passions, and sensible tokens.34 Through his counsel, that is, Elyot was giving his readers a voice – one that allowed them to become patients who counselled with rather than simply took counsel from physicians. The corollary of this was that in reaching a diagnosis, physicians were expected to listen to the patient rather than simply speak at or to them.

III Counsel, then, was an important term in the sixteenth-century Renaissance medical lexicon: ideally, it intimated the wider communication and assimilation of medical knowledge and the possible institution of conversations between physician and patient as equals, at least in so far as basic knowledge was concerned. That said, it could also be characterised as a form of privilege, by which physic in any form was protected as a luxury of the rich, and it became a target for Baconian scepticism in the seventeenth century.35 This scepticism associated counsel with slavish emulation of the ancients and also a ‘vain’ obsession with language and discourse at the expense of material ‘matter’ and ‘weight’. Jumping forward to current clinical medical practice, determining when the sick are receiving good counsel is still a paramount concern. Whereas Elyot took the subject of counsel to be medical knowledge itself, however, modern counsel addresses the human psyche and the place of strong emotion in medical care and advice. Modern clinicians are first and foremost practitioners trained in empirical knowledge and techniques that are not widely shared, at least to standards that would satisfy clinicians. However, much of their practice involves intense conversations – or consultations in which information and advice are imparted. Clinicians recognise freely that the diagnosis and treatment of symptoms are only rarely performed in a discursive or emotional vacuum. On the contrary, treatment is at its most effective when supported by empathetic communication on the part of the clinician. Recognition of this has been slow across history. Emotional illness and conversion disorders became a fashionable branch of neurology and psychiatry. Researchers in

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medical humanities have long sought to demonstrate the importance of empathy. However, it is only more recently that a focus of medical teaching has acknowledged that mood, psychiatric history, and prior experiences of mental traumas including abuse have a direct impact on illness behaviours and illness severity. It is also encouraged by the reconceptualisation of patients as active consumers rather than passive recipients of healthcare and by the high levels of medical discourse analysis to be found in the humanities and social sciences (not least medical humanities), all of which have raised the levels of care and engagement that at least some patients expect. The second half of this chapter reflects on how changing perspectives of the value of the patient, and the patient’s knowledge, within the clinical encounter have changed the meaning and value of good counsel. To this end we have considered three methodologies to be employed alongside the historical semantics facilitated by EEBO. Although each can only be considered briefly, they nevertheless point to the range of ways in which (contra Bacon) language in general and bidirectional counsel in particular can and should be reintroduced into the clinician’s intellectual repertoire. Whilst a historian may start with EEBO, a clinician seeking evidence of language and semantics will usually start with the available scientific literature, commonly accessed through PubMed (http://www.ncbi.nlm.nih.gov/pubmed/), which uses the MEDLINE database of research in medicine and life sciences. We examined how a clinician might use this database to examine ‘counsel’ in a modern clinical context, and whether this would give a rich historical perspective on its practical delivery. A search of PubMed for the term ‘doctor–patient relationship’ yielded 2828 returns.36 When combined with ‘counsel’, returns fell to only nine records, suggesting a lack of explicit dissection of the term in current literature, even if the use of ‘counsel’ and ‘counselling’ remains common and contemporary. Using other related searches, ‘physician–patient relationship counsel’ yielded 195 records. These 195 records were almost entirely comprised of studies and cases where the clinician was providing counsel to the patient, showing that in the current literature we have not moved on from the traditional model of directive, unidirectional counselling from authority to supplicant. Furthermore, whilst practical delivery of counsel is of clinical concern, it is not actively researched to the same degree, though its implications for good clinical care are enormous. Debates on physician bias in the provision of advice were found in the literature: for example, around the area of reproductive care. Yoon, Rasinski and Curlin examined whether physicians felt their own beliefs should influence the advice they provided on issues of sexual health and reproductive care. In this large survey most physicians believed that they should provide neutrally presented information and avoid directive counsel, but with increasing age and decreasing personal religious pluralism there were significant trends indicating that these practitioners would provide more directive advice to patients37. However, in general, the nature of the information available to and sought by clinicians reinforces the view that reflexive analysis of

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counselling and patient encounters, cognisant of prior art, history and philosophical tradition, is not in itself quantifiable or possible to study in a way that meets clinical methodological standards. Clinicians are generally practical people, defaulting to questioning how knowledge generates measurable changes in practice and outcomes. They will mostly find the critical perspectives favoured by medical humanities an interesting diversion but unhelpful in the absence of a framework that translates this knowledge into altered outcomes in a busy workplace. Faced with the problem of making a deeper perspective of counsel relevant to contemporary practice, we resolved on a second approach to complement the medical literature search above, analysing instances of counsel from personal medical practice. Colloquial medical stories still form a part of medical exchange and education, such as the publication of events under the title ‘The patient that changed my life’ or similar in medical journals. We have therefore selected a small number of unpublished personal experiences of encounters involving counsel. Whilst details have been altered or obscured to protect privacy and identities, they should give a true sensation of the experience of these encounters. Surprising narratives are presented often out of the flow of the main consultation, sometimes as patients are walking out of the door. Such narratives demand sudden changes in attention, engagement and emotional tone from the listener/practitioner. Depending on the speciality and occasion, consultations may be as short as six minutes, requiring immense compression of emotional content and either the deliberate avoidance of upsetting topics or their explicit exploration in a focused manner. Patients know they have a limited consultation time and are also aware of the privacy of the clinical relationship. The nature of a private relationship with a relative stranger can enable things to be said that would be hard to say to others, and usual norms of building up to serious issues, or timing of them over a long conversation, are lost. Encounter 1: It was a ten-minute consultation. A patient with a serious medical illness needed review of progress and adjustments of treatments that had the potential to both ameliorate disease and cause significant side-effects, working from a limited new evidence base and requiring weighing-up of approximate risk/benefit ratios. Towards the end of the allotted time, the patient made me the first confidant that they had suffered a series of episodes of childhood sexual abuse. Encounter 2: A man, a grandfather, was awake and alert but dying. I sat with him, his partner, children and grandchildren, and talked about the imminent end of his life. Scientific evidence and clinical experience provided data in terms of units of time left to live, but evidence had little primacy in a conversation of loss and grief, punctuated by tears, laughter, and moments of silence and shared sadness. Encounter 3: A patient noted ‘when you told me I was dying, it was of course an immense shock. I went home in shock, and spent the next few days talking it through with my wife, my parents, and working out how to tell my children. Now I am determined to fight it as long as I can.’

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Encounter 4: A patient noted ‘when you told me that actually I didn’t need to be afraid of my medicine, and explained why it was safe, it completely changed my view of my treatment. You don’t know how much difference you made to me; it’s changed my life.’ This series of encounters could be representative of a day or a week of practice. Encounter 2, but not encounter 1, could be prepared for. Encounter 3 illustrates a situation in which the provision of knowledge was vital, but its emotional implications were dealt with outside the episode. Encounter 4 appeared trivial to the clinician concerned but had an unexpectedly profound effect. In each of these, mutual counsel – sharing of knowledge as equal partners, allowing medical and life experiences to emerge in dialogue and influence the course of events – is central. Clinicians are wary of extended philosophical dissections of these encounters. They often regard a philosophical or linguistic dissection as a complex analysis that has little to offer to a brief episode, when they often look to a manual of personal experience or taught techniques to navigate them before moving on to the next. In this, they fail to recognise that they are already operating within philosophical, social, historical and cultural frameworks that are more usually learnt by example and practice than by formal teaching. From a personal experience of clinical practice, these memories also illustrate that logic and language frequently break down and lose their ability to assist in the face of an overwhelming experience. Havi Carel has written of this when faced with her own life-limiting illness. In a discussion on whether one should fear death in illness, she writes: ‘I also feel like a fraud. Here I am, calmly discussing these questions and intellectual puzzles while inside me a multiple-injury train crash has taken place.’38 It follows that an objective analysis of individual encounters can easily miss the moments of most significance. The emotional timbre and engagement of the encounter are as likely to be remembered and misremembered as the content, or to play a vital part in the framing and processing of information passed by either party in the consultation. It is hard to predict before the encounter what counsel is required, and how to prepare to deliver it. There is no time to consider a philosophical dialogue, or explain or explore the meaning of suffering. Sometimes what is most recollected is the degree of empathy, interest and compassion. With these points in mind, a third method we resolved on was to reclaim the value of words in order to improve practically the delivery of healthcare. Clinicians are not taught to reflect on the backgrounds of the individual words used in the context of counsel, yet we observed that their exploration revealed relationships and meanings with real potential impact on the practical delivery of care. Students are taught values such as truth-telling and compassion, but do not explore or teach the processes of acquiring values, nor what it feels like for values to be refined by the fire of clinical and human failures and successes. Therefore, here, I. S reflected on personal practice, and what words underpinned the provision of good counsel, and illustrated them in a simple semantic network (Figure 29.4). Through this reflection it emerged that good counsel is the point of good medical practice rather than simply a tool. The map so conceived is underpinned by knowledge

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Figure 29.4 Semantic network for ‘counsel’. Author’s own diagram. of self and knowledge of disease: using it, we can look at the underpinning requirements to delivery of effective counsel. To pick on just three of these underpinning terms and concepts: Pearson and Raeke have examined the word ‘trust’ in the patient/ physician’s relationship. They noted that ‘A widely accepted empirical conceptualization and understanding of trust is yet to come.’39 Startlingly, others have devised interventions to increase patient trust in their physician, focusing not on the intrinsic qualities of trust so much as on the use of communication analysis to alter patient perceptions and the appearance of effective doctor–patient relationships.40 But should trust be primarily engendered at the communication level or should it be a feature of holistic personal practice? In this sense, trust becomes the tool of paternalism within counsel. Whereas Elyot’s bidirectional counsel sought to prepare the supplicant to receive well from the physician, good counsel is now perceived as being neutral and nondirective, with a particular requirement to avoid the traps of paternalism. Modern thinking has only very recently begun really to explore the ethical issues of nonpaternalistic provision of care. Beauchamp and Childress make reference to the original work of Feinberg on strong and weak paternalism41 to describe soft and hard paternalism.42 In soft paternalism, interventions are benign in intent, overcoming problems of involuntary conduct. Where trust is created to facilitate the taking up of good counsel, this is effectively soft paternalism. Hard paternalism is still usually

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meant with benign intent but seeks to override voluntary choices. Paternalism is partially at odds with a more difficult component of counsel, mutuality. Smith and Newton have argued for the need for consideration of these issues and demonstrated how absent mutuality is from the clinical encounter. They note: Working together in a demanding clinical relationship, both doctor and patient have a limited capacity to weigh consciously the numerous variables which must be evaluated prior to clinical action. That dialogue should go on is clear; unfortunately, at present, meaningful communication is very rare in the clinical encounter.43 They further argue that distance within clinical relationships is less overt than thought: ‘The myth of clinical distance between the patient and the physician is, after all, only a myth. All relationships involve a blurring of the self/other borders.’ They suggest that ‘Attempting to adhere to the professional requirement of objective distance in the clinical relationship may be more harmful than frankly acknowledging the realm of the intersubjective between physician and patient.’44 Mutuality is further underpinned by authenticity. The respect demanded for the individual authentic experience of the supplicant in the clinical encounter favours an interaction in which mutuality is fostered and hard paternalism rejected. Charles Taylor, in The Ethics of Authenticity, argues, in terms reminiscent of Elyot, that ‘We are embodied agents, living in dialogical conditions, inhabiting time in a specifically human way, that is making sense of our lives as a story that connects the past from which we have come to our future projects.’ Taylor suggests that ‘if we are properly to treat a human being, we have to respect this embodied, dialogical, temporal nature.’ In particular, Runaway extensions of instrumental reason, such as the medical practice that forgets the patient as a person, that takes no account of how the treatment relates to his or her story and thus of the determinants of hope and despair, that neglects the essential rapport between cure-giver and patient – all these have to be resisted in the name of the moral background in benevolence that justifies these applications of instrumental reason themselves.45 Authenticity is not without its problems, though, since it provides a framework that makes resisting of good counsel rather easier, whereby the emphasis is on making my own choice rather than making my own bad choice. The language and rights of choice dominate over the rightness of the underlying decision. It follows that truly effective communication requires mutual authenticity, in which the clinician is also true to their education and beliefs, whilst perceiving their limitations. We still need to define how a clinician maintains authenticity. In most schools of teaching, authenticity of the practitioner must be, to some extent, put aside and subjugated to that of the patient, to maintain a neutral presentation of information and facilitate patient choice, and evidence suggests that modern teaching favours this approach even in morally challenging decision-making.46 The flip side of this is that favouring a primacy of authenticity for the supplicant in the clinical encounter may at times also undermine mutuality,

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since the elevation of one set of rights (the patient’s right to self-determination), whilst valid ethically, may oppose dialogue where a clinician has other views. Finally, we should consider within the lexicon that words frequently fail. The most powerful communication tool is often that of silence, and shared suffering. The use of silence is a true part of counsel, allowing suffering to be shared and space for new directions of deep conversation to emerge. There remains an element at the extreme of suffering that holds true to Wittgenstein’s notion, ‘Whereof one cannot speak, thereof one must be silent.’

IV This chapter has divided into two parts. The first section recovered a Renaissance humanist conception of ‘counsel’ as developed in the medical writings of Thomas Elyot before the Baconian ‘revolution’ of the seventeenth century. It noted that, for Elyot, counsel involved first and foremost communing with the ancients, whose medical wisdom he recovered and translated for his readers. This redistribution of knowledge was intended for vernacular discourse. It was also meant to make for more equal and dialogic consultations between patients and doctors, with the former empowered by the new technology of print and the latter required to improve their practice in the face of an informed and vocal public. The second half of the chapter invited a contemporary clinician to respond to this historical semantics of ‘counsel’ on an observational, philosophical and personal level. It transpires that, in the post-Baconian world, there can be no compromise or indeed equality in terms of the medical knowledge that patient and doctor discuss. For this medical consultant at least, the efficacy of modern medicine science is non-negotiable, its esoteric parameters as closely guarded as the Latinate medicine that Elyot sought to unlock. Instead, the response focused much more on the empathetic dimensions and requirements of clinical conversation: it is the emotional implications of the modern term counsel that were especially resonant, and through which a genuine dialogue between patient and doctor was most likely to emerge. It was accordingly argued that in modern clinical settings the very best interactions involve a kind of emotional equality, with the clinician providing tailored counsel, taking mutual counsel, and learning from the patient just as much as providing advice. Holding this state of mind actively during busy sequential consultations is draining and challenging, but provides rich and rewarding encounters. These early modern and postmodern conceptions of counsel both suggest genuine communication between patient and doctor as engendered through conversation. But whereas early modern community was based on shared knowledge, its modern equivalent is primarily constructed emotionally and empathetically. This is unsurprising. The medical knowledge that Elyot shared with his readers constituted a preventative, external and personalised system that helped the patient by recommending appropriate diet and lifestyle. It was a knowledge that could be learned in the genre of the medical handbook that Elyot pioneered. Modern medical knowledge, in contrast, is curative, intrusive and absolute; it constantly threatens to objectify the patient and

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endows the doctor, as expert, with enormous and esoteric power. In such circumstances it is hardly surprising that the dialogic lessons to be learnt from counsel are both emotional and therapeutic. That such lessons can be learned nevertheless shows that a historical and critically reflective engagement with words can enrich our conception of clinical encounters and improves the relationship between caregiver and receiver. If taught to students and doctors, then we think that a concern for medical language both past and present can provide a useful tool of clinical analysis that allows a fresh and deeper engagement of the practitioner with their work and a better understanding of ourselves, as humans, in time. Most importantly, it is the most likely way to bring back, if not Renaissance humanism, then at least critical humanities to the post-Baconian scientific world.

Further Reading Havi Carel, Illness: The Cry of the Flesh, revised edn (Durham: Acumen Publishing, 2013). Jennifer Richards, ‘Useful Books: Reading Vernacular Regimens in Sixteenth-Century England’, Journal of the History of Ideas 73.2 (2012), pp. 247–71. Cathy Shrank, ‘Thomas Elyot and the Bonds of Community’, in Mike Pincombe and Cathy Shrank (eds), The Oxford Handbook to Tudor Literature, 1585–1603 (Oxford: Oxford University Press, 2009), pp. 154–69. Paul Slack, ‘Mirrors of Health and Treasures of Poor Men: The Use of Vernacular Medical Literature in Tudor England’, in Charles Webster (ed.), Health, Medicine and Mortality in the Sixteenth Century (Cambridge: Cambridge University Press, 1979), pp. 237–73. Charles Taylor, The Ethics of Authenticity (Cambridge, MA: Harvard University Press, 1992). Phil Withington, Society in Early Modern England: The Vernacular Origins of Some Powerful Ideas (Cambridge: Polity, 2010).

Notes 1. Charles Webster, The Great Instauration: Science, Medicine and Reform 1626–1660, 2nd edn (Oxford: Peter Lang, 2002). For a contextualised reappraisal of Bacon’s methodology, see Michel Malherbe, ‘Bacon’s Method of Science’, in Markku Peltonen (ed.), The Cambridge Companion to Bacon (Cambridge: Cambridge University Press, 1996), pp. 75–99. 2. Lisa Jardine, Francis Bacon and the Art of Discovery (Cambridge: Cambridge University Press, 1974), pp. 76–109. 3. Roger French, William Harvey’s Natural Philosophy (Cambridge: Cambridge University Press, 1994); Susan James, Passion and Action: The Emotions in Seventeenth-Century Philosophy (Oxford: Oxford University Press, 1997); Steven Shapin, Leviathan and the Air Pump: Hobbes, Boyle, and the Experimental Life (Princeton: Princeton University Press, 1985). 4. Lisa Jardine and Alan Stewart, Hostage to Fortune: The Troubled Life of Francis Bacon (London: Gollancz, 1998). 5. Brian Vickers, ‘Bacon and Rhetoric’, in Peltonen, The Cambridge Companion to Bacon, pp. 200–60; Quentin Skinner, Reason and Rhetoric in the Philosophy of Hobbes (Cambridge: Cambridge University Press, 1996).

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6. Francis Bacon, The Two Books of Francis Bacon. Of the Proficiency and Advancement of Learning, Divine and Human, To the King (London, 1605), E3v. 7. Ibid., E3r–E4v. 8. For historical semantics, see Phil Withington, Society in Early Modern England: The Vernacular Origins of Some Powerful Ideas (Cambridge: Polity, 2010). 9. For the clashes between philosophy and practice, and the impact of words on experience, see Havi Carel, Illness: The Cry of the Flesh, revised edn (Durham: Acumen Publishing, 2013). 10. Jennifer Richards, ‘Useful Books: Reading Vernacular Regimens in Sixteenth-Century England’, Journal of the History of Ideas 73.2 (2012), pp. 247–71. 11. See Lauren Kassell, ‘Paper Technologies, Digital Technologies: Working with Early Modern Medical Records’, in this volume, pp. 120–35. 12. The best overview remains Roy Porter, The Greatest Benefit to Mankind: A Medical History of Humanity from Antiquity to the Present (London: Fontana Press, 1999). 13. David Gentilcore, Healers and Healing in Early Modern Italy (Manchester: Manchester University Press, 1998). 14. Margaret Pelling, ‘Defensive Tactics: Networking by Female Medical Practitioners in Early Modern London’, in Alexandra Shepard and Phil Withington (eds), Communities in Early Modern England (Manchester: Manchester University Press, 2000), pp. 38–54; Pelling, The Common Lot: Sickness, Medical Occupations and the Urban Poor in Early Modern England (London: Longman, 1998). 15. Paul Slack, ‘Mirrors of Health and Treasures of Poor Men: The Use of Vernacular Medical Literature in Tudor England’, in Charles Webster (ed.), Health, Medicine and Mortality in the Sixteenth Century (Cambridge: Cambridge University Press, 1979), pp. 237–73. 16. For a nice study of the genre, see Mary Fissell, Vernacular Bodies: The Politics of Reproduction in Early Modern England (Oxford: Oxford University Press, 2006). 17. Sir Thomas Elyot, The Castle of Health Gathered and Made by Sir Thomas Elyot Knight, Out of the Chief Authors of Physic, Whereby Every Man may Know the State of his Own Body, the Preservation of Health, and How to Instruct Well his Physician in Sickness that he be not Deceived (London, 1539). 18. Sir Thomas Elyot, The Book Named the Governor (London, 1531). 19. Cathy Shrank, ‘Thomas Elyot and the Bonds of Community’, in Mike Pincombe and Cathy Shrank (eds), The Oxford Handbook to Tudor Literature, 1585–1603 (Oxford: Oxford University Press, 2009), pp. 154–69. 20. http://www.oed.com/view/Entry/42604?rskey=cg2u5N&result=1&isAdvanced=false# eid> (accessed 21 November 2014). 21. Sir Thomas More, Utopia, edited and introduced by David Harris Sacks (New York: Bedford, 1999), pp. 12–15; John Guy, The Public Career of Sir Thomas More (Brighton: Harvester, 1980). 22. All EEBO data were collected from on 13 and 14 November 2014. 23. For ‘happiness’, see Paul Slack, ‘The Politics of Consumption and England’s Happiness in the Later Seventeenth Century’, English Historical Review, vol. CXXII.497 (2007), pp. 609–31; Slack, ‘Material Progress and the Challenge of Affluence in Seventeenth-Century England’, Economic History Review 62.3 (2009), pp. 576–603. 24. See, for example, John F. McDiarmid (ed.), The Monarchical Republic of Early Modern England: Essays in Response to Patrick Collinson (Aldershot: Ashgate, 2007).

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526 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35.

36. 37.

38. 39. 40.

41. 42. 43. 44. 45. 46.

ian sabroe and phil withington Thanks to Jennifer Richards for discussions about Elyot’s conceptions of ‘counsel’. Elyot, Castle, p. 43. Ibid., p. 63. Ibid., p. 66. Ibid., p. 70. Ibid., p. 53. Ibid., pp. 59, 67, 47. Ibid., p. 59. Ibid., p. 63. Ibid., p. 96. William Bullein, A Comfortable Regiment, and a Very Wholesome Order Against the Most Perilous Pleurisy Whereof Many Do Daily Die Within this City of London, and Other Places: And What the Cause is of the Same (London, 1562), pp. 22–3; Thomas Browne, Pseudodoxia Epidemica, or, Enquiries into Very Many Received Tenents and Commonly Presumed Truths (London, 1646), pp. 16, 27. Searched 19 May 2014. John D. Yoon, Kenneth A. Rasinski and Farr A. Curlin ‘Moral Controversy, Directive Counsel, and the Doctor’s Role: Findings from a National Survey of Obstetrician–Gynecologists’, Academic Medicine 85 (2010), pp. 1475–81. Carel, Illness, p. 137. Steven D. Pearson and Lisa H. Raeke, ‘Patients’ Trust in Physicians: Many Theories, Few Measures, and Little Data’, Journal of General Internal Medicine 15 (2000), pp. 509–13. David H. Thom, Daniel A. Bloch and Eleanor S. Segal, ‘An Intervention to Increase Patients’ Trust in their Physicians. Stanford Trust Study Physician Group’, Academic Medicine 74 (1999), pp. 195–8. Joel Feinberg, ‘Legal Paternalism’, Canadian Journal of Philosophy 1 (1971), pp. 105–24. Tom L. Beauchamp and James L. Childress, Principles of Biomedical Ethics, 6th edn (New York: Oxford University Press, 2009), pp. 209–13. David G. Smith and Lisa Newton, ‘Physician and Patient: Respect for Mutuality’, Theoretical Medicine 5 (1984), pp. 43–60. Ibid., p. 53. Charles Taylor, The Ethics of Authenticity (Cambridge, MA: Harvard University Press 1992), pp. 105–6. Yoon et al., ‘Moral Controversy, Directive Counsel, and the Doctor’s Role’.

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30 FICTIONS OF THE HUMAN RIGHT TO HEALTH: WRITING AGAINST THE POSTCOLONIAL EXOTIC IN WESTERN MEDICINE Rosemary J. Jolly

Introduction ‘The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being.’ World Health Organisation Constitution ‘Whether the citizen lives or dies is not a concern of the state. What matters to the state and its records is whether the citizen is alive or dead.’ J. M. Coetzee, Nobel Prize Laureate, from Diary of a Bad Year ‘In the old South Africa we killed people. Now we’re just letting them die.’ Pieter Dirk Uys, South African satirist he last decade has witnessed far greater attention to the social determinants of health in health research,1 but literary studies have yet to address, in a sustained way, how narratives addressing issues of health across postcolonial cultural divides depict the meeting – or non-meeting – of radically differing conceptualisations of wellness and disease.2 This chapter explores representations of illness in which Western narrators and notions of the body are juxtaposed with conceptualisations of health and wellness entirely foreign to them, embedded as the former are in assumptions about Cartesian duality and the superiority of scientific method – itself often conceived of as floating (mysteriously) free from its own processes of enculturation and their attendant limits. In this respect my work joins Volker Scheid’s, in this volume, in using the capacity of critical medical humanities to reassert the cultural specificity of what we have come to know as contemporary biomedicine, often assumed to be a set of practices that has, or ‘should’ have, universal application and acceptance. The two primary texts I analyse here are the Canadian novel Consumption,3 written by a white doctor, Kevin Patterson, who worked in the far North for a number of

T

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years; and award-winning journalist (now academic) Jonny Steinberg’s documentation of the challenges that human immunodeficiency virus (HIV) brings to an indigenous Xhosa community in Three Letter Plague,4 published in North America as Sizwe’s Test.5 In each case, a Western-educated writer traces a narrative encounter between Western medical technology and the ill bodies of indigenous subjects; and in each case, the limitations of the narrator’s understanding of the subjectivity of the ill indigenous subject, and her or his cultural context, undermine any ambitious diagnostic aspirations the narrators may have had for modelling ideal forms of diagnosis and therapeutics. Such strategic incomprehensibility, I argue, is necessary to an anticolonial reformulation of encounters between Western-informed narrators and specific, ill indigenous subjects that would otherwise constitute voyeuristic opportunities to resurrect the (ailing) body of the other as the postcolonial exotic. This highlighting of the limits of colonial diagnostic knowledge works against the narrator-as-doctor enacting the colonialist fantasy of remedying, or ministering to, the chronically ill indigenous subject, in the name of providing health services as a human right. This ideal is a fantasy precisely because the ignorance of the narrator/doctor of his subject renders any attempt at diagnosis – and hence judgement – at best inadequate, and at worst spurious. Graham Huggan, in his influential work on the postcolonial exotic, makes three useful points for analysis of these texts.6 Firstly, the exotic is not a feature inherent in a text or an object: it is a mode of aesthetic perception. Secondly, the aesthetics of exoticisation work to domesticate that which is unfamiliar into the realm of the familiar, even while the very terms of the realm of the familiar are used to assess – and thereby control – that which may have originally been perceived as foreign, and therefore potentially threatening. Thirdly, the politics of the exotic mode of aesthetic perception are characterised by their occlusion. The term Huggan invokes here is Marx’s commodity fetishism, defined as the way in which market-based values obscure the human relationships actually involved in bringing a product to market. In Huggan’s words, the exoticist rhetoric of fetishised otherness and sympathetic identification masks the inequality of the power relations without which the discourse could not function. In the imperial context, as Jonathan Arac and Harriet Ritvo7 have suggested, this masking involves the transformation of power-politics into spectacle. If imperialism, as they define it, is ‘the expansion of nationality’, then exoticism is ‘the aestheticising means by which the pain of that expansion is converted into spectacle, to culture in the service of empire’.8 The exotic spectacle involves not only the dynamics of commodity fetishism, Huggan argues, but also the politics of decontextualisation,9 in which exotic objects appear in the centres of capital as eminently interchangeable, precisely because they are an infinitely substitutable series of material markers of a mystified otherness. The characteristics of commodity fetishism in its exotic form, as Huggan outlines them, are key to my argument in this chapter about the challenges faced by authors representing postcolonised diseased subjects. For the characteristics Huggan names as

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belonging to the postcolonial exotic spectacle – namely, the ‘mystification (or levellingout) of historical experience; imagined access to the cultural other through the process of consumption; [and] reification of people and places into exchangeable aesthetic objects’10 – also threaten to turn the bodies of diseased colonised subjects described in postcolonial narratives into exchangeable aesthetic objects that work as exotic spectacles, conjuring up access to a mystified, irrational otherness while simultaneously promising to resolve, or ‘cure’, the otherness such indigenous diseased subjects represent to the colonial gaze. Kevin Patterson’s fiction, Consumption, describes generations of an Inuit family experiencing the transition from living off the land to living in concentrated, if tiny, settlements with increasing access to consumer goods, Christian values, Western medical care and Kablunauk, or Western, culture more generally. From 1955 to 1965, the Canadian government removed many Inuit from the land and into communities, assuming this would be better for their standard of living, and would, in that respect, bring them closer to (but not exactly into) the realm of the ‘human’, where the ‘human’ is defined by the norms of white culture. This move did not take into account the radical transculturation involved in moving the Inuit away from their traditional means of subsistence into communities that lacked proper infrastructure and forced the Inuit to depend upon wage income and other practices integral to a market-based economy. Patterson’s novel describes this enforced transculturation. Emo and Winnie live off the land until their daughter, Victoria, is taken south to a tuberculosis (TB) sanatorium. In 1962, when the government supply ship C. D. Howe tours the west coast of Baffin Island in the summer, Emo and Winnie take their children for basic medical check-ups. Victoria receives glasses, and is startled by the sudden clarity with which she sees. Her mother distrustfully receives medications for her brother’s ear infection and, finally, the ship’s staff inform Victoria that she will be taken south to a TB sanatorium, as she is TB-positive. Emo, aware of diminishing herds and his own decreasing hunting capacities, decides to move the family to Rankin Inlet, to wooden houses built by the nickel mine for those Inuit prepared to work for the mine. When the mine closes in 1966, Emo, Winnie and their family are left to the mercy of Canadian government handouts and whatever they can hunt for, which is not plentiful, as the concentrated community both discourages the proximity of non-human animals and lessens their numbers through too many hunters hunting too few prey. Winnie is angry with her husband, Emo, both for ‘allowing’ Victoria to be taken south and subsequently for moving off the land and into a relationship of dependency on whites. Emo, for his part, recognises that he is getting older and cannot hunt as effectively as he used to, that the caribou herds are less plentiful, and that Victoria, who has been ailing for some time, will be one less mouth to feed and has not been improving in the family’s care. For Winnie, it is about shame; for Emo, it is about practicality. This impossible choice between physical survival and cultural death, or cultural loyalty and physical demise, will rear its traumatic head repeatedly in the narrative that follows. Victoria returns six years later, having remained south much longer than was medically warranted. An old woman, the only other member of the community taken south

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with Victoria, threw herself off the boat as it approached Newfoundland. When Victoria returns at the age of sixteen to Rankin Inlet, the old woman’s son, Simionie, comes to meet his mother and only then does he find out about her death, from Victoria. Victoria herself is thriving: she has learned English, Cree and French; she is taller than any of her female Inuit relatives, owing to good nutrition; and her good looks, health and foreign ways – including her dedication to reading – have made her an exotic at home, with consequences that will be felt for some generations to come. Patterson’s narrative focuses on Victoria’s life after her return to Rankin Inlet, with several retrospective insertions to describe her life as a child in the south. One of these describes the thoracoplasty Victoria undergoes in the south to cure her of her TB. This narrative takes place in the form of a retrospective fantasy by Victoria’s current doctor, Balthazar, while reading the notes of the surgeon who did the thoracoplasty when Victoria was a girl. This fantastical reading of Victoria’s chart is itself embedded in other, contemporaneous vignettes, one of them of Emo, Victoria’s father, hunting a bull seal. In her work on the racialisation of TB in French literature, Laurel Dezieck traces its representation from the Romantic era to its manifestation in works from and about francophone West Africa.11 The romantic period celebrated the ‘beautiful death’ of TB, in which the fashionable emaciated bodies and pale faces of TB sufferers became ubiquitous markers of the moral beauty supposedly evidenced by the relinquishment of material embodiment in favour of metaphysical beauty, as has been noted by a host of literary commentators. Possibly most succinct is Susan Sontag, who observes that the location of the disease in the area of the lungs, associated with breathing and therefore superiority of the soul, helped ensure that ‘for over a hundred years TB remained the preferred way of giving death a meaning: an edified, refined disease.’12 Dezieck points out that in French colonialist medical and literary treatises, TB-as-noble-attribute does not survive the colonialist racialisation of the disease. The African who suffers TB does so as a consequence of being a child-like, animalistic, primitive being, whose immunological system is not sufficiently developed to ward off the disease. Explicit notions of the contribution of miscegenation to ‘primitive’ forms of TB are evident in Dr Oswald’s 1946 publication on pulmonary TB in African native troops: ‘The tendency towards chronicity amongst the Cape Coloured is notable and may be attributable to the mixture of European with native blood.’13 Similarly, TB among the Inuit is also not associated with the European trope of ‘beautiful death’. Current rates of TB in the Inuit population remain, conservatively speaking, twenty to fifty times higher than those of Canadian non-Aboriginal populations. Kullmann and Richmond argue persuasively that this is largely due to a reliance on biomedical cures to solve the problem, rather than an analysis and intervention in the area of the social determinants of health, including household crowding, poverty and associated malnutrition.14 What Patterson’s novel addresses, however, goes beyond even the fictional Dr Balthazar’s meticulous treatise on the social determinants of the health of the Inuit. The novel suggests that scientific medical practice is imbued with its acolytes’ desire

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to envision indigenous illness as a visual spectacle of abjection – itself a spectacularly imperial fantasy – that demands the sympathetic identification of the doctor to ‘cure’, or domesticate, the diseased Aboriginal body. This fantasy illustrates colonial medicine as an act that conforms uncannily well to Huggan’s description of the functioning of the postcolonial exotic. This resurrection of the Western medical self as indispensable saviour not only results in the fetishisation of the ill indigenous subject, but also naturalises illness as endemic to the contemporary indigenous subject, while obfuscating colonial ‘conditions of production’ of that subject’s illness in the first place. The Kablunauk Dr Balthazar, who ultimately attends upon the births of all four of Victoria’s children, falls in love not, as he may think, with Victoria, but with the spectacle of her childhood surgery, in which he imagines her as a helpless and fearful child. He turned the pages over, one after the other, rapt, imagining the girl . . . these pages would be read like ritual in the clinic in Rankin Inlet, the reader’s chest feeling tight and full of ache for the little girl, splayed open like a char and so alone.15 Balthazar, himself aware of the history of TB as the harbinger of beautiful death, also provides the youthful Victoria with the books she so craves from her years of reading in the south. The first three books he gives her are Catcher in the Rye, A Passage to India and The Magic Mountain. Read as intertexts, this trilogy speaks volumes about Balthazar, whose apparent interest in Victoria masks his own desire to be, if not diagnosed, at least understood. Like Salinger’s protagonist, he is a lost citizen of New York City, where he lives in an apartment when not in the Arctic, fantasising about reclaiming, if not defending, the lost innocence he attributes to Victoria’s pre-south childhood. A Passage to India appears as a sort of unsubtle, if not farcical, comment on Victoria’s exotic attractiveness for Balthazar. If Adele in that novel fantasises about being assaulted by Dr Aziz, Balthazar most certainly fantasises that his medical ‘assaults’ on Victoria provide him with access to the cultural other, despite his inability to relate to Victoria in any way that is not, above all else, self-referential. Finally, The Magic Mountain, Thomas Mann’s famous novel about the inhabitants of a TB sanatorium in the Swiss Alps, suggests that Balthazar is encouraging Victoria to read her own TB as that which instils artistic genius. Humans have always chosen to suffer from TB and madness, Mann’s narrator proposes, in order to garner superior knowledge for humankind. However, it is not Victoria who understands her illness as a sacrifice; it is how Balthazar sees it. While the reader may sympathise with Balthazar at points in the novel, its revelation of him as a narrator rendered unreliable, through his own addictions and his associated failure to care for his patients, makes a reading of illness as noble in the novel virtually impossible; it is too clearly embedded in the structural violence of the colonial encounter. In a passage precisely juxtaposed with the surgical precision of Emo’s slaughtering of a bull seal for food, Balthazar imagines how Victoria would have experienced her operation. The narrative marks the fact that this is a fantastical, not actual, account of Victoria’s experience by utilising the subjunctive mood for an unreal condition. The narrative reflects upon Victoria’s imagined response to the ether: ‘She would have thought,

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“What a strong smell”, then stopped counting backwards.’16 The narrative goes on to describe, in brutally anatomical terms emphasised by a series of plosive consonants, the thoracoplasty Victoria received due to her lung’s resistance to antibiotic treatment. The surgeon ‘clamped the right upper lobe bronchus and prepared to divide it’, ‘snapped the girl’s ribs’ and excised the damaged tissue that felt ‘like a piece of cookie sewed inside a sponge’.17 In contrast to the voyeurism inherent in Balthazar’s fetishisation of Victoria’s prone, girlish body undergoing surgery is the respectful precision with which Emo hunts the bull seal. Requiring no less physical skill than the doctor, the kill requires respect for the adversary, a respect that leads us to mourn the bull’s loss of life as Emo butchers his carcass for the meat, while leaving the skin and bones for his hunting dogs, without our in any way wishing that Emo would relinquish the subsistence hunting that continues to provide him with physical and mental health – and healthy food. A classic, triangulated figure of homosocial bonding, the description of Victoria’s surgery leaves at least this reader with more of a sense of Balthazar’s envy of, and admiration for, the surgeon who so easily breaks Victoria’s ribs and enters her body, rather than any affection he believes he has for Victoria herself. The expressed motivation for the Canadian removal of the Inuit from the land and into communities was the right of all humans to health and human dignity. The assumption, however, is that the Inuit were rendered somehow more human, and less animal and/or primitive, through their enforced transition to modes of living approximating those of their white compatriots. This gives us occasion to pause over what we mean by our assumption of health as a human right, and what it might mean to attribute that right to others without understanding the material and cross-cultural resources needed to deliver upon its assumed promise. The consumption of the title is a two-fold reference to Victoria’s TB and to Balthazar’s morphine addiction, which leads not only to the death of Victoria’s fourth child at his birth – a delivery Balthazar mangles owing to his drugged state – but also, arguably, to Victoria’s youngest daughter’s suicide. The right to health, Consumption suggests, practically and paradoxically, can render the assumed ‘beneficiary’ of that right vulnerable to harm. Marie, Victoria’s daughter, develops anorexia nervosa. As her brother Pauloosie refuses to eat Kablunauk food and lives off the land, and her sister Justine thrives on all things Kablunauk, including pop music, Marie, conversely, fails to thrive. After repeated testing for TB, Marie is sent south for further TB testing. Apparently negative for TB, she is put in a psychiatric ward for anorexia nervosa treatment. Marie escapes the hospital and commits suicide by throwing herself off a bridge in Winnipeg, much as Simionie’s mother had done decades earlier by throwing herself from the deck of the C. D. Howe. The doctor who phones Balthazar with the news of Marie’s suicide is disgusted by Balthazar’s attempts to ameliorate her sense of responsibility for Marie’s undetected departure from the hospital and subsequent death. It is clear from the medical reports Balthazar receives that Marie is in an acute stage of illness, and the southern doctors are puzzled as to why Balthazar has not intervened at an earlier stage. In addition, his medical colleague from the south raises the question of whether Marie has ever been sexually abused, a question Balthazar has never previously reflected on, but

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an obvious one where anorexia nervosa presents itself, and one that sheds yet further suspicion on Balthazar, whom Marie distrusts acutely and whose body fat repulses her. It is clear that Balthazar would rather have an acutely anxious Victoria and her ailing daughter in his clinic than attempt to relieve the suffering by sending Marie south – a move that would also deny him the ‘professional’ opportunity to comfort either of them. Moreover, Marie is turned into an academic curiosity in his musings with her Winnipeg doctor. She is definitely a medical exotic, as the first Inuit teenager to present with anorexia nervosa. She is, however, not in the minority when it comes to the statistics on Inuit self-harm and suicide: current statistics describe an epidemic of suicide and self-harm among Inuit youth that is nothing short of scandalous.18 The figure of Marie raises the question of whether the provision of health as a human right is strategically and irredeemably mediated by a scientific model of human health that obscures its own desire for access to the other on exotic terms – that is, its desire for an other that conforms to its notion of a ‘proper’ other – through its expression of sympathetic valuation as the ‘gift’ of (bare) life.19 In this putative deal, physical life is granted in a way that evinces the biopolitical power that the provision of the human right has over the life of the assumed subject of that right, marking the right as more properly an exchange that will be unobtainable, if the conditions of its offering cannot be met by the subject. It would seem, too, that the conditions of its offering may well be, if not simply undesirable, certainly impossible for subjects to meet, if those conditions entail radically changing the way one lives in the world to orient oneself toward consumer culture and its associated individualisms, Cartesian assumptions of what it means to be human, and denial of any question of what resistance to such change – a change usually experienced with traumatic immediacy over the course of three generations or less – might mean, in terms of loss rather than gain. Any attempt to reckon such loss can only proceed with an awareness of the risks of resurrecting the pre-scientific past as an Edenic state, and subjecting indigenous subjects to a neo-anthropological gaze, in which speculation about indigenous belief systems is rendered exotic through partial explanations of alternative belief systems that appear complete. This, then, is an inquiry that must remain acutely aware of what it does not and cannot know, and of which it has no embodied experience, but it is, to my mind, an essential inquiry to undertake. The fact that I am using creative writing to frame this inquiry is crucial, not incidental. I claim that the disciplined inventiveness that creative writing at its best can manifest is uniquely suited to negotiating the dangers of assuming knowledge of the indigenous subject, on the one hand, and assuming resolute belief in the scientific as a practice undamaged by its ignorance of its cultural limitations, on the other. This is obviously not to argue that creative narrative has not played an enormous role in constructing damaging otherness. It is, however, to argue that creative narrative has a unique capacity to explore transcultural encounters of differences in values in the construction of meanings of wellness and disease, without needing to assert its own rightness or righteousness. For while medical discourse has been moving steadily in the direction of acknowledging its embeddedness in cultural discourses of the West, it appears constitutionally incapable, as an institution,

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of approaching matters of cultural otherness with anything other than patronisation, which I extend to include Western medicine’s occasional rapt fascination with, but nevertheless ultimate dismissal of, what it sees as exotic therapeutic practices. This question is explored in this volume in David Herman’s chapter on human–animal entanglements in the context of autistic children: is the animal a companion subject assisting communication or a co-exotic, with the autistic child, creating a spectacle for medical patronage? Perhaps the most notorious example of the postcolonial medical spectacle of the past quarter of a century lies in South Africa’s denial of the human immunodeficiency virus as the cause of acquired immunodeficiency syndrome (AIDS) under the regime of President Thabo Mbeki. I have explored what I see as the cultural and political reasons for this at length elsewhere.20 Here, however, I wish to trace journalist Jonny Steinberg’s skilful inquiry into ordinary South African citizens’ mass refusal of treatment, even when highly active anti-retroviral therapy (HAART) was made available locally. The narrative describes Steinberg’s encounters with, on the one hand, a formidable public health force in the form of a Médecins sans Frontières doctor named Hermann Reuter, and, on the other, Sizwe Magadla, resident of Ithanga in the rural Lusikisiki, son of an igqirha, a diviner–healer, and proud owner of a spaza shop – a shack where locals can buy anything from tea to beer to soap. Embedded in Sizwe’s personal history is a useful protection against the romanticisation of the role of the igqirha, or sangoma. To become a sangoma one must receive a calling from the ancestors. This usually comes in the form of a sustained illness, which can only be healed by the person who suffers from it entering into the lengthy process of apprenticing as a sangoma. Sizwe’s father undertook his apprenticeship at a time when Sizwe and his brother were of school age, pitching the family into dire poverty, and leaving their mother to cope with the family’s attendant starvation. Sizwe is deeply immersed in the indigenous cultural fabric that insists that members of the living appease the ancestors to ensure a prosperous life in the present, yet even he doubts his ancestral grandfather’s presence as a recognised protector of the family. Why, he asks, if his grandfather were watching over the family, would his father have been able to take a step so disastrous for the family’s material well-being? Sizwe himself has only escaped dire poverty through the generosity of a family of umlungus (that is, whites), who gave him the money to set up a spaza shop in grateful thanks for his assistance in their birdwatching activities. Sizwe accompanies Jonny on his trips to understand the workings of Hermann Reuter’s clinic and, in particular, home-based care worker Kate Marrandi’s phenomenal work to bring anti-retroviral drugs (ARVs) to those members of her community who are HIV-positive. Sizwe, like many of his generation, is confronted with not simply a clash of cultures but also a fundamental chasm in systems of belief – ways of understanding, and thus being in, the world. Like the Inuit, he understands that, as one sleeps, evil spirits may inhabit one’s body; in the Xhosa world, a diviner is required to counter their power.21 Illness is a sign of bewitchment, of bad relations between oneself and one’s

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neighbours, or of the inability of the living to appease the ancestors. Yet, as he sees increasing evidence of the ability of ARVs to save lives, he himself starts to support community members who become ill to test for HIV, such as his deceased friend’s brother, Xolela. Xolela has tested positive for HIV previously, but denies the diagnosis until he becomes extremely ill and is taken for testing by Sizwe. Sizwe himself thinks about testing for HIV. His long-time girlfriend is negative, but he often feels ill and weak, and has stomach problems. However, despite his acknowledgement to Steinberg that he has changed his mind about both shingles and ARVs – for him, shingles are no longer caused by evil spirits dragging snakes across the victim’s skin but a sign of HIV, and he sees ARVs working to save lives – Sizwe refuses to test. Sizwe is in constant fear that his business will fail. The more successful he is financially, the better he can support his partner and bride-to-be, Nwabisa, and their son, Mfanawetu, but the more fearful he becomes that someone will attack his business, that the community will refuse to purchase from him and that his business will fail and his life along with it: Periodically, I [Steinberg] asked Sizwe how business was going. Well, he would invariably reply. Long may it last, I would say. ‘But it will not last long,’ he would invariably reply. ‘It is only a matter of time before my customers leave me.’ ‘Why are you sure they will do that?’ ‘One day I will bring home a car, and they will see this. Then I will build myself a big rondavel, and they will see that. At some point one of them will say out loud, “Whose money is making him so rich? It is ours. Every pension day we come here to pay his debts, and there our money is in his car and his rondavel.” And then they will all leave and go to make some other spaza shop owner rich, leaving me with nothing.’22 Sizwe believes that by prospering in the face of his poor neighbours, he is indeed tempting evil by contributing to rifts in the fabric of the community and setting himself up as better than most of its members. Allied to this is the fact that he received his start-up funds from umlungus, and not only shared his knowledge of local birds with them, but also set up a cultural tour involving visits to indigenous healers, witnessing a sacrificial goat slaughter and the like. Now he is conceivably selling out his culture once again. He is making friends with an umlungu, Jonny Steinberg, telling him community secrets, and betraying his community at the same time in the expectation that the relationship with the said umlungu will bring him prosperity. Sizwe laughs that he and Botha Sicgau, the chief who traded his people’s land for money in the 1960s, ‘are the traitors of Lusikisiki’.23 As with the sense of the shamefulness for not remaining independent felt by Winnie in Consumption, in Sizwe’s Test HAART is configured as that which the Lusikisiki population resort to when their own traditional means of healing fail them. In this context, those that go public about their HIV status are, in a sense, also traitors, betraying the

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very essence of their Xhosa being. White culture has not historically brought much good to the Xhosa and white technology has most certainly been used as much as a means of oppression as one of assistance. That such assistance itself has always come from whites in the form of paternalistic sympathy is not lost on Sizwe for a moment. He does a brilliant, if painful, parody of how the community health workers’ counselling for testing and HAART sounds exactly like the Zionist preachers. Give up your community affiliations, both preach, and you will instead be welcomed into the community of the righteous, the community of the HAART support groups. Even the rhetoric of testimony is the same. ‘I have HIV,’ a patient tells Dr Reuter, who responds by saying the patient ‘must’ practise saying this in the company of others. Note the rhetoric of confession and catechism that subtends their exchange: ‘And here at the clinic, have you done the spit test and the blood test?’ ‘I did the spit test today. The blood test last week.’ ‘And what was the result?’ ‘Positive.’ ‘What was that?’ ‘I am HIV positive.’ ‘Good,’ Hermann said. ‘It is good you can say it like that. You must practise saying it.’24 Presumably Hermann Reuter has access to the test results, but he demands that the patient self-identify, not merely as ‘positive’ but as ‘HIV positive’. The patient has to accept the identity that follows from naming aloud the eponymous three-letter plague that comprises the title of the South African edition of Steinberg’s book. Notably, the patient in this extract has a wound in his throat, caused by a knife. Upon Hermann’s questioning, the patient says he got it while smoking dagga (ganja) and does not know what happened. Once the doctor leaves the room, the nurse asks the patient once again, and he replies that he tried to kill himself. She asks if it was after he tested for HIV. He says, ‘No. It was before that.’ She asks, ‘Then why did you do it?’ He merely shakes his head in response.25 There is, of course, an assumption on the part of the nurse that the patient requires an HIV test to know he is HIV-positive, even though this patient is close to death when he presents for treatment. It also bears reflection that the patient harms himself in an area that affects both the consumption of food (he states that rice falls out the hole in his throat when he tries to eat it) and the delivery of speech.26 Had the wound not been operated on three weeks earlier, the patient would not have been able to conform to Hermann’s notion of the ideal: he would not be able to self-identify as HIV-positive. Later, Hermann tells Jonny that this is indeed his favourite kind of patient: one that, once on ARVs, will dramatically come back from the dead, gain his original weight, and appear as living proof of the success of the ARV programme in the community – and of the power of Hermann Reuter and his message. Of the patient’s recent suicidal attempt, nothing more is said. Life may be sustained, but at what cost?

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The HIV support group attendees are portrayed as acolytes who ‘do nothing’; they are not active agents in the community, as far as Sizwe is concerned. They have identified themselves in ways that place them not just within the realm of HIV stigma, but conversely outside the realm of believers in the culture of the community. They are not subjects, but abject objects, waiting for the white men’s medicine to keep them alive, but for what? Sizwe poses this question when he tries to explain to Jonny that testing means death, not that testing will make him die, but that to find out he is positive will completely sap his will to live. He will do nothing, be unable to provide for his family, be unable even to produce a family of his own without the taint of intergenerational morbidity and mortality. Hermann Reuter’s commitment to the rationality of the public health approach to HIV is tyrannical and he expects his HIV-positive patients to spread the word. This is based on his – and the Treatment Action Campaign’s – belief that if enough HIV-positive citizens receive HAART, get better and live well, they will demand consistent provision of HAART and related HIV care, thus forcing the state to improve healthcare services and at the same time reducing stigma. Reuter sees Jonny’s book as a waste of time: It was indeed as simple as that for Hermann. The problem was never the people, always the state. What was happening in villagers’ heads was secondary. What was happening in the health care system is what really counted. If the drugs were accessible, the treatment good, the clinic lines short, the hospital beds free, people would come, and they would heal . . . Like death, stigma was a function of poor healthcare.27 Apart from the fact that this assumes a kind of AIDS exceptionalism, which ignores entirely the stigma associated with many other forms of illness, such as developmental disabilities, Hermann’s approach – while irreproachable from one point of view – is, from another, completely dismissive of Sizwe and the broader community’s alternative approaches to the causes of illness, which Hermann views as exotic superstition. This becomes apparent when he entertains Jonny’s narratives of Sizwe’s – and the broader community’s – alternative conceptualisations of the causes of and cures for HIV, which he views as entertaining yet dangerous exoticisms that will disappear once the state fixes the education and health systems. In Huggan’s terms, then, Hermann Reuter assumes the triumph of the biomedical as a universal, to which the (exotic) resistance of a number of specific, alternative belief systems can be substituted for one another as curiosities that will ultimately have no bearing on the unbridled success and superiority of the culture of sameness assumed by the biomedical model. Patients figure in this scheme as Huggan’s reified aesthetic objects, exchangeable for one another in a game where they are reduced to foils that prove the superiority of Western medical prowess. It is this profound discounting of the subjects of the state as subjects in the making of the state that gives the lie to the provision of health as a human right. Hermann will only proffer healthcare to ‘obedient’ patients. They must come to the clinic. No provision is made for them to avoid what is reduced to ‘AIDS

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stigma’. No attention is given to the possible benefits of allying the clinic with a traditional healer. Similarly, the Canadian state can only see itself as responsible for Inuit health if the Inuit are acculturated to Kablunauk ways. The state, in both Reuter’s and the Canadian state’s point of view, as evidenced in Consumption, must take care of its citizens as if they were children, but the condition of subjects receiving life-giving medication is their own humiliation. The embodied experience of receiving the healthcare that Hermann advocates for as a human right hardly seems like the exercise of a right, then, but rather, as I noted earlier, a deal, in which community members are required to surrender a core part of their identity in exchange for life-giving medications from whites. The spectacle of their return to physical health – mental health being demonstrably and materially denied as a criterion of care – is living proof of the success of the Western medical paradigm. But this is a paradigm that has a fundamental weakness in understanding the sociocultural determinants of disease, which thus renders it relatively unhelpful in addressing conditions such as Marie’s. The right to health is actualised in both Consumption and Sizwe’s Test as a choice between physical life in exchange for cultural death, or physical death in exchange for human dignity. The exercise of the right to human health as a humane experience, it would seem, requires the equivalent of an earthquake-like disruption of the hubristic culture subtending conceptualisations of the modern democratic state and the technologies we depend upon to support the rights upon which those conceptualisations depend, the provision of Western medical technology and its role in biopolitics foremost among them. The art of narrating otherness specifically as a subversion of readings of the postcolonial diseased body as hypostasised, exotic spectacle is one modest way, I propose, to begin this gargantuan task.

Further Reading Warwick P. Anderson, ‘Where is the Postcolonial History of Medicine?’, Bulletin of the History of Medicine 72.3 (1998), pp. 522–30. Alan Bleakley, Julie Brice and John Bligh, ‘Thinking the Post-colonial in Medical Education’, Medical Education 42.3 (2008), pp. 1365–2923. Byron J. Good, Michael M. J. Fischer, Sarah S. Willen and Mary-Jo Del Vecchio Good (eds), A Reader in Medical Anthropology: Theoretical Trajectories, Emergent Realities (Malden and Oxford: Wiley–Blackwell, 2010). Michelle Keown, Postcolonial Pacific Writing: Representations of the Body (Abingdon and New York: Routledge, 2005). Laurence Kirmayer and Gail Guthrie Valaskakis (eds), Healing Traditions: The Mental Health of Aboriginal Populations in Canada (Vancouver: University of British Columbia Press, 2009). Jo Wreford, ‘Loosening the Bonds of Historical Prejudice: Traditional Practitioners as Agents of Reconciliation and Change in Contemporary South Africa’, in Anne Digby, Waltraud Ernst and Projit B. Mukharji (eds), Crossing Colonial Historiographies: Histories of Colonial and Indigenous Medicines in Transnational Perspective (Newcastle upon Tyne: Cambridge Scholars Publishing, 2010), pp. 213–32.

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Notes 1. World Health Organisation, Closing the Gap in a Generation: Health Equity Through Action on Social Determinants of Health. Final Report (Geneva: World Health Organisation, 2008). 2. Work to bridge this gap is in its relative infancy, from both the medical side (see Roberta Bivins, ‘Coming “Home” to (Post)Colonial Medicine: Treating Tropical Bodies in PostWar Britain’, Social History of Medicine 26.1 (2012), pp. 1–20) and the literary critical side, which tends to read the postcolonial novel as traumatic, rather than tracing the specifics of medical encounters within those novels (see Stef Craps and Gert Buelens (eds), ‘Introduction: Postcolonial Trauma Novels’, Studies in the Novel 40.1/2 (2008), pp. 1–12; Stef Craps, Postcolonial Witnessing: Trauma out of Bounds (New York: Palgrave Macmillan, 2013); David Lloyd, ‘Colonial Trauma/Postcolonial Recovery’, Interventions 2.2 (2001), pp. 212–28; Irene Visser, ‘Trauma Theory and Postcolonial Literary Studies’, Journal of Postcolonial Writing 47.3 (2011), pp. 270–82; and Katherine Isobel Baxter, ‘Memory and Photography: Rethinking Postcolonial Trauma Studies’, Journal of Postcolonial Writing 47.1 (2011), pp. 18–29). 3. Kevin Patterson, Consumption, 2nd edn (Toronto: Vintage Canada, 2008). 4. Jonny Steinberg, Three Letter Plague: A Young Man’s Journey Through a Great Epidemic (London: Vintage UK, 2008). 5. Jonny Steinberg, Sizwe’s Test (New York: Simon & Schuster, 2008). 6. Graham Huggan, The Postcolonial Exotic: Marketing the Margins (London and New York: Routledge, 2001). 7. Jonathan Arac and Harriet Ritvo (eds), Macropolitics of Nineteenth-Century Literature: Nationalism, Exoticism, Imperialism (Philadelphia: University of Pennsylvania Press, 1991). 8. Huggan, The Postcolonial Exotic, p. 14. 9. Ibid., p. 16. 10. Ibid., p. 19. 11. Laurel Caren Dezieck, The Artist, the Martyred and the Damned: Literary and Cultural Representations of Tuberculosis in France and Francophone West Africa. Honours thesis (Middletown, CT: Wesleyan University, 2011), p. 16. 12. Susan Sontag, Illness as Metaphor (New York: Random House, 1979). 13. Neville C. Oswald, ‘Pulmonary Tuberculosis in Native Troops’, Thorax 1.2 (1946), p. 112. 14. Kasandra Kullmann and Chantelle Richmond, ‘Addressing the Persistence of Tuberculosis Among the Canadian Inuit Population: The Need for a Social Determinants of Health Framework’, International Indigenous Policy Journal 2.1 (2011), p. 13. 15. Patterson, Consumption, p. 57. 16. Ibid., p. 55. 17. Ibid., p. 56. 18. Inuit children and teenagers are currently thirty times more likely to die of suicide than their southern counterparts (see Lisa N. Oliver, Paul A. Peters and Dafna E. Kohen, Mortality Rates Among Children and Teenagers Living in Inuit Nunangat, 1994 to 2008 (7 pages), Statistics Canada, Catalogue no. 82-003-X, vol. 23, no. 3 (July 2012) (accessed 14 July 2015). 19. Giorgio Agamben, Homo Sacer: Sovereign Power and Bare Life, trans. Daniel HellerRoazen (Stanford: Stanford University Press, 1998).

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20. Rosemary Jane Jolly, Cultured Violence: Narrative, Social Suffering and Engendering Human Rights in Contemporary South Africa (Liverpool: Liverpool University Press, 2010). 21. For a discussion of this phenomenon, see Samuel Law and Laurence Kirmayer, ‘Inuit Interpretations of Sleep Paralysis’, Transcultural Psychiatry 42.1 (2005), pp. 93–112. 22. Steinberg, Sizwe’s Test, p. 302. 23. Ibid., p. 295. 24. Ibid., p. 253. 25. Ibid., p. 254. 26. Ibid., p. 253. 27. Ibid., p. 256.

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31 CULTURE IN MEDICINE: AN ARGUMENT AGAINST COMPETENCE Rebecca J. Hester

‘What kind of knowledge do you want to disqualify in the very instant of your demand: Is it a ‘science’? Which speaking, discoursing subjects – which subjects of experience and knowledge – do you then want to ‘diminish’ when you say: ‘I who conduct this discourse am conducting a scientific discourse, and I am a scientist’? Which theoretical–political avant garde do you want to enthrone in order to isolate it from all the discontinuous forms of knowledge that circulate about it?’1 Michel Foucault, ‘Two Lectures’

Introduction: Interrogating Competence when it Comes to Culture in Medicine

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or the last few decades cultural competence has been celebrated as the curricular response to a variety of political and social challenges in healthcare. These challenges include the persistence of race- and ethnicity-based health disparities, breakdowns in communication between the patient and provider, and issues of cultural difference around delivery and acceptance of healthcare.2 Commonly defined as ‘a set of congruent behaviors, attitudes, and policies that come together in a system, agency or among professionals and enable that system, agency or those professions to work effectively in cross-cultural situations’, cultural competence is meant to engender increased sensitivity, humility and awareness with regard to cultural diversity in the clinical context.3 Such diversity encompasses a broad spectrum of issues including health beliefs, the racial make-up of both patient and provider, linguistic access, gender and class disparities, as well as patient compliance and treatment. Despite its continuing curricular adoption, the use of culture in this pedagogical approach has been widely critiqued. Critical scholars of cultural competence have argued that the way that culture is conceptualised within this framework is problematic because it reduces human complexity to a set of cultural traits, equates culture with race and ethnicity to the exclusion of other categories, produces and reinforces the very stereotypes and discriminatory practices that often cause disparities in clinical treatment and health outcomes, and fails to address the structural determinants

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of health, leading to a ‘blame the victim’ approach.4 Beyond flaws in their theoretical conceptualisation of culture, cultural competency pedagogies have been critiqued for failing to demonstrate with any methodological rigour that they are meeting their objectives or that they have any value at all for medical education.5 Whilst there has been substantive debate about the value of cultural competency education for clinical practice, it is important to note that the focus of this debate has often been trained on the issue of culture while leaving the other side of the concept, competence, largely unanalysed.6 Although many scholars have argued that culture is too complex an issue to be competent about, and some have proposed alternative frameworks to competence such as cultural sensitivity, cultural humility, cultural safety and even insurgent multiculturalism, few have questioned the underlying premise that more knowledge, expertise, information, introspection and skills (i.e. competence) on the part of the health professional will lead to better, more equitable interactions in the clinic.7 Certainly, the ability to demonstrate technical and scientific competence is imperative in order to advance in medical school and no one would wittingly seek medical care from an incompetent doctor; nevertheless, as I outline below, the idea that competence in the culture of the patient can and does offset power inequities requires further interrogation. In what follows, I explore the meaning of competence when it comes to culture in medicine by showing how competence, as opposed to culture, acts as an organising principle for the clinical interaction. Using Mary-Jo Del Vecchio Good’s work on competence in American medicine, I discuss the symbolic value of competence for both physicians and medical students.8 I then expand Good’s analysis to the value of competence when dealing with a culturally diverse patient population. Through this discussion I ask what it might mean for a physician to claim ‘competence’ about the identity, norms, lifestyle or ‘culture’ of a patient, as one would about biology or physiology. Drawing from the lessons of disciplines such as feminism, postcolonial theory and the history of medicine, I suggest that the increased knowledge about cultural others that cultural competence pedagogies aspire to has just as often led to more, not less, inequality, abuse and exploitation of populations from culturally non-dominant backgrounds. Beyond the idea that cultural competence has often facilitated cultural dominance, I contend that, despite claims to cultural ignorance (which then generate calls for more cultural competence training), medicine has always used particular forms of cultural and social knowledge, or competence, to advance its scientific and political objectives, even as it purports to be scientifically neutral. For example, centuries of biomedical experimentation, as well as contemporary understandings of race and genetics, have relied heavily on culturally inflected frameworks. These frameworks are, in turn, informed by the epistemic, not just racial and ethnic, differences between health professionals and their patients. Given this, I conclude that competence, when it comes to culture in medicine, is as much about legitimating and reinforcing the epistemological and social power of biomedicine as a scientific episteme as it is about recognising and embracing alternative perspectives, if not more so. Thus, when it comes to culture in

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medicine, the oft-lauded idea that more competence will offset racial and ethnic health inequities is dubious.9 By displacing the critique from culture to competence, my intention is to shift the analytical lens from a focus on what and who is known (that is, what are Hispanics, African Americans, Asians or Whites like, and why?) to the lens through which we come to ‘know’ and represent an other in clinical medicine and with what effects. Interrogation of this power–knowledge nexus allows us to assess critically the ways in which our best efforts to decrease racial and ethnic disparities in healthcare may actually contribute to reproducing epistemic inequity and injustice for minority populations. While I am not disputing the many important ways in which cultural and linguistic competence can and does facilitate the clinical relationship, I want to inject critical reflection on the taken-for-grantedness of competence as the great equalising force when dealing with questions of diversity in medicine. As Dwight Conquergood argues, ‘critical theory is committed to unveiling the political stakes that anchor cultural practices-research and scholarly practices no less than the everyday.’10 Distinguishing between logical empiricists and critical theorists, Conquergood argues that the former are dedicated to the eviction of politics from science while the latter are committed to the excavation of the political underpinnings of all modes of representation, including the scientific.11 Taking up Conquergood’s distinction, the discussion presented here offers a critical analysis of competence as a biomedical episteme rather than a moral or ethical exploration of whether and how medical doctors should treat cultural difference. My analysis is informed both by the idea that curriculum is cultural practice, and by my own experiences teaching in a medical school in Texas and conducting ethnographic research on cultural competency workshops offered by indigenous Mexican migrants in California.12 These experiences have led me to the conclusion that the framework of competence, when it comes to culture in medicine, facilitates a kind of professional hubris that too easily dismisses and disparages epistemic diversity even as it recognises racial, ethnic and linguistic heterogeneity. This chapter begins to unpack how and why that happens. By examining competence, I am not leaving the ‘culture concept’ behind, however. Rather, following the contribution of Des Fitzgerald and Felicity Callard to this volume,13 this chapter contributes to the critical medical humanities by interrogating the ways in which contemporary imaginaries of the human are produced in biomedical and clinical spaces. In other words, it addresses the ways in which the cultures and epistemologies of biomedicine themselves produce and, in so doing, circumscribe notions of what it means to be human.

The Symbolic and Epistemic Value of Cultural Competence In her ethnographic studies on American medicine, anthropologist Mary-Jo Del Vecchio Good found that competence is a central organising framework through which power struggles regarding expertise, authority, specialty, gender, identity and pedagogy are negotiated among and between doctors.14 She argues that competence

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is not only a powerful vehicle through which specialty cleavages and conflict within medical communities are articulated, but also a mode through which competition due to changes in the political economy of medical practice is registered. Because of its centrality to the practice of medicine, Good claims, ‘ “competence” in medicine is not only an empirical reality’, an attribute of physicians, but ‘a core symbol that mediates a variety of experiences and carries diverse meaning’ in the clinic.15 In her book, American Medicine: The Quest for Competence, Good describes the ways in which competence is socially produced, developed and shaped throughout medical school and in the daily practice of medicine. For example, through interactions with attending physicians, residents and interns throughout the course of clinical clerkships, ‘students develop a heightened attention not only to official evaluations but to the daily backstage actions of unofficial and informal judgments, and thus students become initiated into the professional discourse on physician competence.’16 This professional discourse continues once the student moves into practice. As Good found in a small community setting in California, the position of physicians in a local hierarchy were determined by their ‘competence’ as expressed in the idioms of ‘training’, ‘certification’ and ‘authorised knowledge’.17 Indeed, it is these three areas, measured by the Objective Structured Clinical Examination (OSCE), standardised board examinations, and direct observation in clinical settings, respectively, that have become the gold standard for measuring physician competence.18 Not only is competence an evaluative framework through which medical professionals measure themselves and their colleagues, but it is also a way to validate one’s own scientific and professional expertise in society. Indeed, Good found that against the backdrop of increasing patient distrust, rapid technical advances, the marketisation of medicine and fears of medical malpractice, competence has become a way to legitimate and dispute scientific authority, solidify social prestige and challenge the ideological orientations of colleagues. While Good is careful to demonstrate that competence is both difficult to determine and hotly debated among professionals, what is clear is that it has played a strong role in organising contemporary medical practice and professional debate not just in the US but increasingly across the globe under the influence of the biomedical model.19 Drawing from Good’s analysis, competence in medicine can be understood as a set of ‘discursive practices’, or what philosopher Michel Foucault calls ‘a systematicity which is neither logical nor linguistic’.20 Such practices ‘are characterised by the demarcation of a field of objects, by the definition of a legitimate perspective for a subject of knowledge, and by the setting of norms for elaborating concepts and theories’.21 While there is a tendency to assume a homogeneity or disciplinary focus to discursive practices, Foucault argues that they are not purely and simply modes of manufacture of discourse. Rather, they bring together or pass through a number of disciplines or scientific areas, gathering them into sometimes inconspicuous clusters. He writes, ‘They take shape in technical ensembles, in institutions, in behavioral schemes, in types of transmission and dissemination, in pedagogical forms that both impose and maintain them.’22 These technical ensembles form what Foucault calls an

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episteme, or ‘the strategic apparatus which permits of separating out from among all the statements which are possible those that will be acceptable within . . . a field of scientificity’.23 An episteme defines not only what is welcomed and acceptable within the scientific field, but also the kinds of knowledges, understandings and ‘signifying ensembles’ that are excluded as non-scientific. Debates about research findings, medical procedures and the efficacy of particular pharmaceuticals, as well as pedagogical and economic imperatives, all revolve around questions of ‘good’, ‘competent’ scientific practice in biomedicine. Meanwhile, questions of personal belief, the phenomenological experience of the patient, and historical and structural forces shaping health outcomes are seen as outside of the realm of scientificity and are, therefore, largely excluded from biomedical pedagogies. As an episteme, competence in medicine brings together anxieties about scientific and professional expertise, prestige and authority. It is shaped both by clinical priorities based on biomedical knowledge and by the neoliberal imperatives of standardisation, metrics, measurements, accountability, efficiency and expertise, standards which themselves have taken on a kind of scientific authority in a market-based healthcare economy. Given its central role in defining and reinforcing the values of medicine, as well as those of neoliberal capitalism, it is not surprising that competence has become the epistemological framework for quantifying and evaluating clinical and scientific prowess. What is surprising, however, is that competence has also become the pedagogical framework for less purportedly scientific domains in the clinic, such as patient culture. Indeed, major health institutions, such as the Institute of Medicine, the Health Resources and Services Administration, the National Institutes of Health, the Bureau of Primary Health Care and many others, have embraced cultural competency as a core strategy not just for educating health professionals, but as part of the clinical toolkit. This embrace, which tracks on to the larger movement for competence-based learning in education, has been met by a proliferation of textbooks, guidebooks and resources to teach health professionals how to be culturally competent and to teach educators how to evaluate it in their students. As competency-based education has taken hold over the last few decades, cultural competency pedagogies have become focused on teaching students how to integrate and apply cultural knowledge in the clinic in a manner akin to the ways in which they would apply scientific knowledge in their OSCEs. A high level of cultural competence about the patient is meant to be achieved through a tripartite model in which students refine their ‘knowledge, skills, and attitudes’ (about the patient) throughout their medical education so as to identify better and address effectively when and how a cultural ‘issue’ is at stake in the clinic. This ‘three-legged stool’ approach has become the curricular standard for teaching and evaluating a health practitioner’s competence in patient culture.24 But, what does it mean to aspire to, let alone claim competence in and over, the body, life, language, norms and identity (that is, culture) of a patient or population? What might a physician’s cultural competence mean for the patient about whom the physicians claim to be competent?

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The Trouble with Competence The prevailing assumption in many cultural competency interventions is that physicians do not know about cultural others and, therefore, need to be educated about them.25 For example, the Institute of Medicine’s authoritative tome on health disparities in medicine, Unequal Treatment, argues that cross-cultural education is necessary ‘to enhance health professionals’ awareness of how cultural and social factors influence healthcare’.26 In a more direct take on what he calls ‘medical racism’, John Hoberman argues that ‘there is no room to assume that whites’ knowledge of black lives has improved since the 1960’s.’27 Cultural competency training also assumes that physicians do not know themselves.28 More than one study encourages physicians to engage in self-assessment, introspection and life-long learning.29 This kind of ethical self-fashioning teaches cultural relativism and self-reflexivity in order for physicians to be more ethical and humble practitioners.30 At the same time, however, it frames healthcare professionals as unskilled and ignorant when it comes to patients from a different culture. Indeed, the call for more, better or improved competence assumes a knowledge deficit on the part of the medical practitioner. Yet, these calls ignore the ways in which healthcare practitioners do understand themselves and others. In other words, they ignore the ways in which medical subjectivities have been, and continue to be, shaped in relation to culturally diverse patients and to the cultural norms of biomedicine. As one study with psychiatry residents at Harvard puts it, ‘residents are not a blank slate.’31 Hoberman puts a finer point on it, arguing that ‘Whites, including doctors, who inhabit a media universe that features large numbers of black entertainers, athletes, and criminals, are likely to believe that they know more than they do about the personal lives and qualities of their black fellow citizens.’32 These studies show that, despite claims to cultural ignorance, healthcare practitioners come to the clinical environment with some cultural understanding and, as the extensive scholarship on health inequities has shown, stereotypes and prejudices. Unfortunately, the untenable assumption that medical practitioners have no background knowledge about their patient’s culture is reinforced in assessments used to measure cultural competence.33 Given the presumption of cultural ignorance, conventional wisdom in academic medicine holds that increased cultural competence will lead to more humble, ethical and humane practitioners and thus to happier patients. This wisdom is informed by notions of scientific rationality that presume a relationship between the teleological progression of knowledge and an increase in enlightened behaviour. Specifically, cultural competence pedagogies work from the premise that more knowledge about cultural others will improve the behaviour, attitudes and ethical outlook of culturally dominant groups. In fact, however, history has too often shown the opposite when it comes to relations between dominant and oppressed populations. Increased knowledge about cultural and racial others has historically been used to oppress, subjugate and exploit non-Western and non-dominant populations rather than to treat them in more ethical and humane ways. Indeed, cultural knowledge in the colonies, on the

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slave plantations, in prisons and war camps, during the Cold War, and in a variety of other circumstances and places, including communities of colour in the US, has served to solidify the hegemony and authority of those in power. The emergence of Area Studies, the invention of the Peace Corps, and myriad other foreign policy strategies have used cultural knowledge to attain cultural, social, political and economic dominance in other countries. This includes efforts by the US military to become more culturally competent as a way of winning the ‘hearts and minds’ of potentially hostile foreign populations. Domestically, undercover law enforcement officers have a long history of using cultural knowledge to infiltrate student groups, social movements and community organisations in an effort to control racial and religious minorities. Medicine has not been excluded from this dynamic. Daniel Headrick has argued that medicine was one of the most important ‘tools of empire’.34 This tool was wielded in a variety of contexts to deal with, as well as to perpetrate, what Warwick Anderson has called ‘colonial pathologies’.35 These pathologies were also perpetrated on minorities in the US, as scholars such as Harriet A. Washington, Allen M. Hornblum, James H. Jones, John Hoberman and many others have shown. These histories make only too clear the instrumental role that cultural knowledge has played in legitimating medical violence under the guise of fostering health and healing. This violence was perpetrated not only by extracting biological information from the bodies of subaltern subjects, women, the poor and minorities but also, and primarily, from extracting and using cultural knowledge about them. As feminists and postcolonial scholars have argued, ‘Imperialism and culture were and are linked in many different ways.’36 Contrary to the idea that medicine suffers from cultural ignorance, the history of medicine shows that biomedicine has always relied on some form of pre-existing cultural knowledge about those populations to be experimented upon, researched and treated. These studies reveal the ways in which scientific and social authority have been conflated in and through biomedicine, and the ways in which this conflation has legitimated torturous interventions by medical practitioners in the name of scientific progress. The most famous examples of such interventions include the dissection and exhibition of the brain, organs, buttocks and genitalia of a South African woman named Saartjie/Sarah Baartman, also called ‘the Hottentot Venus’; the sterilisation of and medical experimentation on Jews in Auschwitz; syphilis experiments on Guatemalan peasants and African American men in Tuskegee, Alabama; the exploitation of Henrietta Lacks, a poor African American woman, for her cells (referred to as Hela cells); the sterilisation of women in Puerto Rico and black and Latina women on the US mainland; and, most recently, the torture of political prisoners at Guantánamo and Abu Ghraib with the help of medical professionals. Through these examples we see the ways in which racial and cultural knowledge has been conflated with scientific knowledge and then become central to determinations about which populations can be used for experimentation, research and even medically endorsed torture. On the flip side, the extensive literature on health inequities shows how middle-class whites receive better treatment and more access to care, consequently living longer.37 Like torture and

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unethical medical experimentation, privilege and access in medicine are also a result of preconceived cultural understandings. These cases illuminate the manner in which the imperative for scientific progress has fit hand in glove with the long-standing and particular uses of culture in medicine. As historians of medicine have shown, the exploitative and instrumental use of culture to maintain medical dominance within and over vulnerable populations is itself a long-standing cultural component of biomedicine. Surprisingly, however, the role of biomedical culture in such epistemo-political projects has not been invoked in current conceptualisations of cultural competency. Rather, the contemporary focus on cultural competence has too often focused on getting to know the culture of the patient (as if she only had one) and whether or not the clinical staff has attended well enough to ‘it’. Thus, the dehistoricised and uncritical version of cultural competence, which assumes the need to redress the epistemic shortcomings of physicians with regard to patient culture while ignoring the ways in which the biomedical establishments and its practitioners have always-already relied on received racial and cultural understandings, reinforces characterisations of biomedicine as both scientifically and socially neutral and beneficent while obscuring the ways in which medical dominance has historically depended on gathering and deploying cultural knowledge, or ‘competence’, to establish and maintain its hegemony. The other side of the instrumental use and extraction of cultural knowledge for medical purposes is the implementation and spread of scientific knowledge to oppressed peoples while disregarding the knowledges and practices of those people. For example, scholars of science and colonialism have emphasised not only the discursive or ideological power of science, but also the ways in which Western scientific knowledge has been co-constituted with colonialism.38 Even as Western medicine was using particular cultural notions to advance its agenda, it was (and still is) busy spreading and reproducing its own biomedical culture. Put another way, Western biomedicine has a long history of acknowledging cultural others while ignoring or disparaging their cultural particularities in order to solidify and reproduce its own authority. The movement for complementary and alternative medicine (CAM), which seeks to recentre some of the traditional practices that have been marginalised by Western biomedicine, is a direct result of this kind of biomedical cultural imperialism. In order both to acknowledge and to ignore culturally diverse patients, and their beliefs and experiences, physicians have learned to hear only particular kinds of narratives and to extract only what is held to be the most clinically relevant information. Drawing from her ethnographic research, Good describes this process: Students discovered that to be considered competent medical students, they must undo the common-sense narratives of patients. Nevertheless, throughout the clinical rotations, students were encouraged to create medically meaningful arguments and plots with therapeutic consequences for patients. In this process, they sharpened their biomedical ‘gaze’ and developed their clinical reasoning. Throughout these exercises, the ‘psychosocial’ aspects of most patient’s illnesses, their social histories and emotional states, and their lives outside the hospitals and clinics were

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largely irrelevant; these data from daily life were often regarded as ‘inadmissible evidence’ in the presentations made during everyday work rounds.39 Importantly, physicians in training refine this technique as part of becoming clinically competent doctors. For example, in a 2011 special issue of Culture, Medicine and Psychiatry, guest editors Seth Holmes, Angela Jenks and Scott Stonington brought together a series of papers that showed how clinical subjectivities are produced through medical training. These papers demonstrated the dialectical nature of the clinical interaction by linking the outward objectification of the patient to the inward objectification of the physician self. Importantly, they showed that ‘the experience of becoming a subject is linked to the experience of subjugation in important ways.’40

Cultural Competence as Epistemic Injustice The dynamic of what we might call ‘instrumental acknowledgement’, described above, has been resisted for decades by women-of-colour feminists, critical race scholars and postcolonial theorists. They have argued that it is not that dominant groups do not know them, but how they know them that is the problem. As Hazel Carby argues, in her article ‘White Woman Listen!’, ‘The black women’s critique of history has not only involved us coming to terms with “absences”; we have also been outraged by the ways in which it has made us visible, when it has chosen to see us.’41 The politics of representation alluded to by Carby, which both erases and visibilises black women’s lives according to a masculine, white, Western world view, is part of a larger politics of representation and recognition that has shaped such critical fields as feminism, women’s studies, black and ethnic studies, and postcolonial and anti-imperialist studies. What is at stake is the authority to define the categories, rules, values and symbols that are used to represent those groups that have historically been excluded from or misrepresented by mainstream society. In other words, what is at stake is the ability to shape and reproduce an episteme using discursive practices that have been marginalised as unscientific, irrational, illogical. In the case of medicine, these practices are labelled ‘traditional’, ‘ethnic’, ‘alternative’ or ‘complementary’. Such labels explicitly signal the spaces and subjects of medical marginality, while the same time implicitly reinforcing Western biomedicine, practised historically by white males, as the norm. Indeed, they beg the question: alternative and complementary to what and whom? When biomedicine appeals to phenotype or demographics to understand patient diversity, it can lead to stereotypes that effectively erase the patient by re-presenting her through an identity, a voice and a way of being that correspond more closely to discourses and ideas about her cultural identity than to the cultural differences or similarities that are actually at work. This kind of erasure can also happen based on a particular way of hearing the patient, as described above when students learn to listen for only the clinically relevant information. When a person’s thoughts, beliefs, ideas and ways of being are disparaged as illogical, irrational or unscientific, or when a person is not allowed to be present in her full human complexity, then this form of dismissal or prejudice falls into the category of what Miranda Fricker calls epistemic injustice,

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or the dehumanisation of someone based on his or her capacity as a knower.42 The corrective to this dynamic is not to make the person who is speaking talk more (as in patient-centred care) or to understand differently (as is promoted in the health literacy movement).43 These kinds of translational exercises have been critiqued by women-ofcolour feminists for putting the onus on the minority subject for continually having to explain herself.44 Rather, one response is to make the hearer hear and understand differently. This is no small task, as it would disrupt the entire pedagogical premise of biomedicine, which takes competence in all things clinical, including the culture of the patient, as one of its organising principles and which has as its imperative scientific, including social scientific, authority and legitimacy. It is not just the pedagogies that would be at stake in this intervention. At this point, there are economic, legal, social and even ethical imperatives tied to maintaining a high level of competence in all aspects of patient care. Failing to attend to these entangled imperatives could have serious legal and economic consequences for practitioners. On the other hand, faithfully attending to them undermines epistemic and social equality between patient and provider within the clinic. When biomedicine at once draws from particular cultural understandings, including the very cultural self-understanding that medicine ‘knows’ best, while at the same time circumscribing the patient’s identity and experiences in accordance with bioscientific norms, what is missing is the ability for the patient to be fully recognised and her story to be fully present in the medical narrative. Fricker calls this a ‘credibility deficit’.45 This deficit occurs in testimonial transaction, when a speaker receives a deflated degree of credibility from a hearer owing to prejudice on the hearer’s part. Patients, especially when they are cultural or racial minorities, but even when they are white Westerners who disagree with the physician (such as anti-vaccine groups), suffer from this credibility gap simply by virtue of their inability or unwillingness to adopt the biomedical world view. The deficit in credibility afforded to a speaker can often be owing to one’s identity, but it can also be owing to one’s perceived lack of scientificity. Indeed, many of my first- and second-year medical students have explained to me that they would adopt a paternalistic stance toward their patients in the event of a disagreement because ‘we have more education than them’ and ‘they don’t know all the science behind our decisions.’ Relatedly, a gap of credibility can also occur when a patient expresses a phenomenologically different experience. Havi Carel and Ian James Kidd show how this happens when the testimonies of patients in pain are dismissed by medical practitioners.46 Through its episteme of competence, which includes being economically efficient by reducing the time spent with each individual in order to see more patients throughout the day (while paying less attention to them), biomedicine deflates the credibility of alternative perspectives and then calls its own unwillingness or inability to accept the credibility of alternative perspectives ‘cultural ignorance’. Then, having proclaimed such ignorance, biomedicine clamours for more cultural competence. Thus, despite the intentional focus on getting to know the patient in his or her full complexity that is

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expressed in patient-centred medicine, a conjuring trick is played in the clinical interaction in which the other’s empirical presence turns into her theoretical absence when it comes to identifying and treating her. This occurs through the toolkit approach to culture outlined above, as well as through a denial of coevalness or equal status through a credibility deficit.47 In so far as it requires the translation of the other into the idioms and epistemes of medical professionals (such as is proposed by health literacy), the linguistic and cultural translation of the patient is, in fact, an appropriation of the other. The focus on cultural competence in medicine holds in place the subject/object distinction, making the practitioner the subject who is the knower and the patient the object to be known. Within this dynamic, the clinician gets to decide not only the status of what is to be known (social history, systems review), but also the methods of knowledge production to be utilised (verbal, physical, visual, technological). This imbalance in power can lead to what Fricker calls a hermeneutical injustice.48 Both in deflating the patient’s credibility and in pushing for more cultural competence, biomedicine reinforces its own authority. Thus, rather than representing opposite sides of the spectrum (cultural ignorance versus cultural competence), when these two sides are taken together they reinforce the hegemony of biomedical perspectives and practitioners in the clinical interaction, leading to epistemic, not just racial or ethnic, injustice (although, as Fricker argues, the two are often linked). The injustice is often compounded when the patient disagrees with the healthcare provider or fails to follow doctor’s orders and is labelled ‘non-compliant’. Disagreement with the physician is rarely seen as healthy debate about the life, body and identity of the patient, or as an important expression of alternative or subjugated knowledges. In other words, disagreement is rarely seen as an opportunity to recognise a patient based on his or her capacity as a knower. Rather, it is often framed as defiance, recalcitrance or ignorance and understood as a lack of a scientifically based sense of what is good and right for the patient. That is, it becomes an opportunity to dismiss the patient in his or capacity as a knower. Even when a patient’s cultural and linguistic norms are addressed, the embrace of cultural relativism is often foreshortened when the scientific authority of the provider is affronted by the patient. This is best explained by Trostle, who has argued that patient compliance operates as an ideology that assumes and justifies physician authority.49 Even in its most mundane and passive forms, non-compliance is seen as an affront to this authority. It can hardly be otherwise, as medical training itself is based on a paternalistic model in which medical students receive ‘early concern notes’, signalling them as potentially disrespectful and unprofessional students, when they fail to exhibit acceptable deference and respect to those higher up than them in the medical hierarchy.50 Students feel ethically torn as they are told that their primary concern is their patient, while every implicit message they receive while in training is that their real concern is what their attending physicians think of them. Although students learn that medicine is a ‘culture of no culture’, biomedicine certainly has core values and beliefs, symbolic and linguistic systems, and behaviour patterns belying the fact that it is cultureless.51 If scientific knowledge is not value-free, cultural knowledge is even less so, given the complexity and dynamism of

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human interaction. In reinforcing the cultural (that is, scientific) values of biomedicine, cultural competence training allows the practitioner and the field of biomedicine to avoid actually having to take on board and assimilate the world views of cultural others or even the world views of those who disagree with them. They feel confident that they, unlike the majority of their patients, have scientific knowledge on their side. The idea that physicians are the authorities in the clinic by virtue of their scientific competence and that it is their competence that bestows their authority leaves little room for other competences, knowledges and understandings deemed unscientific by the biomedical episteme to enter the clinical interaction. When these do come up, time pressures related to efficiency and revenue generation ensure that they are not thoroughly explored, even if the physician is willing to do so. To summarise, competence in cultural matters is problematic, in my view, not only because it offers a ‘Disneyfied’ version of patient culture (as true as that may be), but also, and more importantly, because it epistemically undermines the patient by deflating her credibility as a knower through categorising her as one to be known or to become competent about. The ethical dilemma arises because access to this kind of scientific competence is precisely the reason that patients go to the doctor. Yet, the push for cultural competence incentivises the clinical worker to gain and maintain epistemic authority over every aspect of the patient’s social and symbolic life (her culture), beyond understanding her biology and physiology, while it offers little in the way of equalising the clinical interaction. Because of its aspirations to competence over the culture of an other as a confirmation of the clinical self, I suggest that cultural competence does not represent an antidote to medicine’s legacy of unequal treatment, but rather a subtler and more insidious continuation of the same. Given this, it becomes clear that its role as an organising principle is to produce and reinforce the epistemic authority of biomedical practitioners. Mary-Jo Del Vecchio Good comes to a similar conclusion. She explains that scientific turf battles, power struggles and ideological authority are what is stake in ‘competence’ talk in biomedicine.52 The focus on competence also functions as a way to narrow the clinical focus and ignore other issues, such as social context and history, in the name of efficiency. As more than a decade of scholarship in medical anthropology has argued, the reduction of culture to a concept that it is ‘teachable’ and ‘learnable’ fails to understand the processual and intersubjective aspects of culture as ‘a process of making meanings, making social relations, and making the world that we inhabit’.53 Indeed, one of the most frequently invoked definitions of cultural competence (drawn from Spector and cited at the outset of the chapter) emphasises its effectiveness for doctors, institutions and systems but, notably, not for patients. Despite the fact that social and cultural factors are often outside of the competence of the doctor, they are central to the patient’s symptoms, treatment and outcomes. Medical practitioners are not trained in the social determinants of health and thus have little grounds, other than their personal experience, for exercising social scientific authority over their patients. This dynamic breeds social hubris under the guise of clinical competence. Further, it encourages the acquisition of more, not less, competence to redress it. This is quite

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contrary to the desired (and often suggested) outcome in which practitioners become more humble, ethical and humane by both recognising their ignorance and redressing it through cultural competence. While cultural competence is meant to facilitate equitable relations in the clinic, there is little proof that it does so.54 In fact, given what I have outlined above, there are reasons to believe that it exacerbates power inequities not because of medicine’s impoverished understanding of culture, as has been amply argued by social scientists, but because of its adept use and implementation of culture for specific clinical purposes, including its use of ‘cultural ignorance’.

Conclusion: Current Trends in Healthcare Although purportedly remediating cultural ignorance, I have argued that the purpose of cultural competency interventions is to teach healthcare professionals to use the culture, language and norms of their patients instrumentally for political and scientific ends. This instrumental use of culture is what we understand by competence and is not the same as a more copious recognition and grappling with the world view and epistemic diversity of culturally ‘different’ groups. Building on the idea that competence is a mechanism for both negotiating and maintaining the epistemic and cultural authority of medical professionals, cultural competence is therefore not only about knowing the patient more and better, but also about being able to use that cultural knowledge ‘effectively’ to persuade the patient to do what the physician wants him or her to do according to the values and cultures of biomedicine. To be precise, I have suggested that cultural competence is at once a tool for physicians to ensure patient compliance under the guise of equalising doctor–patient relations, and a way to generate quick profit by minimising expenditures of time and effort on patients. If one of the unstated goals of cultural competence is to ensure patient compliance while bolstering and legitimating both biomedical science and the epistemic authority of the physician, then current trends in healthcare will only exacerbate this dynamic. In the US context, the Affordable Care Act has implemented a ‘pay-for-performance’ scheme in which reimbursement reflects provider performance on metrics based on adherence to certain care processes, scores on patient satisfaction surveys, or patient outcomes.55 Under this kind of a scheme, the incentives to use cultural knowledge instrumentally will only grow as physicians are increasingly held accountable for the health outcomes of their patients and reimbursed accordingly. The marketisation of medicine, the increasing demand for generating clinical revenue, and the pressures to achieve ‘quality’ outcomes all conspire against a medical practice that would take its time and prioritise the epistemic complexities and diversities of a patient population. Biomedical pedagogies also ensure that this imperialistic dynamic will continue. While medical students are well trained in the biomedical sciences, there is very little coursework dedicated to critical reflection on competing ideas of political economy, society, social behaviour, or what is meant by ‘human nature’. This is surprising, given that, as Virchow reminded us, ‘medicine is a social science in its very bone and marrow.’56 Scientific, political, economic and social histories, discourses and power

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relations between and within groups and institutions are brought to bear when questions of culture are invoked in medicine, yet medical professionals are rarely trained to interpret critically and understand the impact of these structural, historical and epistemological forces on the clinical interaction (not just on the patient’s health), however. Instead, they are taught that medical knowledge is scientifically neutral and that their orientation to their patients, whatever their cultural background, should be non-prejudicial, as well. If medical practitioners are encouraged to be culturally competent, the social lives of their patients become part of the medical knowledge that makes up their purportedly neutral scientific toolkit. This dynamic is going global. Western medical education is making inroads into medical schools, hospitals and clinics across the world.57 Along with this model come the conceptual frameworks, pedagogical practices and curricular structures of Western biomedicine. While this may be appealing to some observers, a postcolonial read of this curricular creep cautions against the kind of scientific imperialism that can be trafficked in under the auspices of scientific progress. Despite these fears, however, the burgeoning literature on the ‘hidden curriculum’ in medicine alerts us to the fact that much of the learning in medical school occurs in informal, unstructured ways and is informed by local, regional and national norms and cultures.58 This means that a Western-based curriculum will not necessarily be adopted unquestioningly and implemented wholesale. Rather, it will be negotiated in a local context by those implementing and receiving it. The adoption of Western-based curricula in non-Western nations becomes more worrying, however, when their implementation occurs in a context that has been shaped by the imperatives of liberal democracy and market-based relations (sometimes called structural adjustment policies). When the internal and external contexts of medical education are structured in Western norms, then it is more likely that the epistemic and cultural imperatives of Western curricula will become naturalised even as they are being practised and implemented by subaltern populations. To counteract these trends in healthcare, I argue against competence when it comes to culture in medicine, proposing instead that we focus on the ways in which epistemic inequities and injustice manifest themselves in the clinical endeavour under the guise of ameliorating the same. Given the troubled history of culture in medicine, more emphasis needs to be paid to the ‘culture of power’ than to the ‘power of culture’ in the clinic. Specifically, we need to pay attention to the kinds of social and epistemic violence that competence and its theoretical complement, ignorance, do within the cultures and practices of biomedicine as this episteme goes global.

Further Reading Dolores Delgado Bernal, ‘Critical Race Theory, Latino Critical Theory, and Critical Racedgendered Epistemologies: Recognizing Students of Color as Holders and Creators of Knowledge’, Qualitative Inquiry 8.1 (2002), pp. 105–26. Kristie Dotson, ‘A Cautionary Tale: On Limiting Epistemic Oppression’, Frontiers: A Journal of Women Studies 33.1 (2012), pp. 24–47.

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Sandra G. Harding, Is Science Multicultural?: Postcolonialisms, Feminisms, and Epistemologies (Bloomington: Indiana University Press, 1998). Montgomery McFate, ‘Anthropology and Counterinsurgency: The Strange Story of their Curious Relationship’, Military Review 85.2 (2005), p. 24.

Notes 1. Michel Foucault, ‘Two Lectures’, in Colin Gordon (ed.), Power/Knowledge: Selected Interviews and Other Writings, 1972–1977 (New York: Pantheon Books, 1980), p. 85. 2. H. Jack Geiger, ‘Race and Health Care – An American Dilemma?’, New England Journal of Medicine 335.11 (1996), pp. 815–16; Brian D. Smedley, Adrienne Y. Stith and Alan R. Nelson, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Board on Health Sciences Policy, Institute of Medicine of the National Academies; Washington, DC: National Academies Press, 2003); John Hoberman, Black and Blue: The Origins and Consequences of Medical Racism (Berkeley: University of California Press, 2012); Alicia Fernandez, Dean Schillinger, Kevin Grumbach, Anne Rosenthal, Anita L. Stewart, Frances Wang and Eliseo J. Pérez-Stable, ‘Physician Language Ability and Cultural Competence’, Journal of General Internal Medicine 19.2 (2004), pp. 167–74; Rachel E. Spector, Cultural Diversity in Health and Illness, 6th edn (Upper Saddle River, NJ: Pearson/Prentice Hall, 2004). 3. Terry L. Cross, Barbara J. Bazron, Karl W. Dennis and Mareasa R. Isaacs, Towards a Culturally Competent System of Care: A Monograph on Effective Services for Minority Children who are Severely Emotionally Disturbed (Washington, DC: CASSP Technical Assistance Center, Georgetown University Child Development Center, 1989). 4. Angela C. Jenks, ‘From “Lists of Traits” to “Open-mindedness”: Emerging Issues in Cultural Competence Education’, Culture, Medicine, and Psychiatry 35.2 (2011), pp. 209–35; Susan J. Shaw, ‘The Politics of Recognition in Culturally Appropriate Care’, Medical Anthropology Quarterly 19.3 (2005), pp. 290–309; Susan J. Shaw, ‘The Logic of Identity and Resemblance in Culturally Appropriate Health Care’, Health 14.5 (2010), pp. 523–44; Zofia Kumas-Tan, Brenda Beagan, Charlotte Loppie, Anna MacLeod and Blye Frank, ‘Measures of Cultural Competence: Examining Hidden Assumptions’, Academic Medicine 82.6 (2007), pp. 548–57; Rebecca J. Hester, ‘The Promise and Paradox of Cultural Competence’, HEC Forum 24.4 (2012), pp. 279–91; Hoberman, Black and Blue; Seth M. Holmes, ‘The Clinical Gaze in the Practice of Migrant Health: Mexican Migrants in the United States’, Social Science & Medicine 74.6 (2012), pp. 873–81; Jonathan Metzl and Helena Hansen, ‘Structural Competency: Theorizing a New Medical Engagement with Stigma and Inequality’, Social Science & Medicine 103 (2014), pp. 126–33. 5. Eboni G. Price, Mary Catherine Beach, Tiffany L. Gary, Karen A. Robinson, Aysegul Gozu, Ana Palacio, Carole Smarth, Mollie Jenckes, Carolyn Feuerstein, Eric B. Bass, Neil R. Powe and Lisa Cooper, ‘A Systematic Review of the Methodological Rigor of Studies Evaluating Cultural Competence Training of Health Professionals’, Academic Medicine 80.6 (2005), pp. 578–86; Brenda L. Beagan, ‘Teaching Social and Cultural Awareness to Medical Students: “It’s all very nice to talk about it in theory, but ultimately it makes no difference” ’, Academic Medicine 78.6 (2003), pp. 605–14.

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6. While many have questioned the usefulness of competence when it comes to culture, and some have even claimed that cultural competence is not equivalent to an abdominal examination, I know of no sustained reflection on the theoretical and political work that competence does when it comes to culture in medicine. 7. Lawrence O. Gostin, ‘Informed Consent, Cultural Sensitivity, and Respect for Persons’, Journal of the American Medical Association 274.10 (1995), pp. 844–5; Tervalon and Murray-García, ‘Cultural Humility Versus Cultural Competence; Irihapeti Ramsden, ‘Cultural Safety in Nursing Education in Aotearoa (New Zealand)’, Nursing Praxis in New Zealand 8.3 (1993), p. 4; Elain Papps and Irihapeti Ramsden, ‘Cultural Safety in Nursing: The New Zealand Experience’, International Journal for Quality in Health Care 8.5 (1996), pp. 491–7; Delese Wear, ‘Insurgent Multiculturalism: Rethinking How and Why We Teach Culture in Medical Education’, Academic Medicine 78.6 (2003), pp. 549–54. 8. Mary-Jo Del Vecchio Good, American Medicine: The Quest for Competence (Berkeley: University of California Press, 1995). 9. Smedley, Stith and Nelson, Unequal Treatment. 10. Dwight Conquergood, ‘Rethinking Ethnography: Towards a Critical Cultural Politics’, Communications Monographs 58.2 (1991), p. 179. 11. Ibid. 12. Yatta Kanu, Curriculum as Cultural Practice: Postcolonial Imaginations (Toronto: University of Toronto Press, 2006); Rebecca J. Hester, ‘Cultural Competence Training and Indigenous Cultural Politics in California’, Latino Studies 13.3 (2015), pp. 316–38. 13. Des Fitzgerald and Felicity Callard, ‘Entangling the Medical Humanities’, in this volume, pp. 35–49. 14. Good, American Medicine. 15. Ibid., p. 9. 16. Ibid., p. 144. 17. Ibid., p. 36. 18. Carol Carraccio and Robert Englander, ‘The Objective Structured Clinical Examination: A Step in the Direction of Competency-based Evaluation’, Archives of Pediatrics & Adolescent Medicine 154.7 (2000), pp. 736–41. 19. Good, American Medicine; Wai-Ching Leung, ‘Competency Based Medical Training: Review’, British Medical Journal 325.7366 (2002), p. 693. 20. Michel Foucault, ‘The Will to Knowledge’, in Ethics: Subjectivity and Truth, ed. Paul Rabinow (New York: New Press, 1997), p. 11. 21. Ibid. 22. Ibid., p. 12. 23. Michel Foucault, ‘The Confession of the Flesh’, in Power/Knowledge: Selected Interviews and Other Writings, 1972–1977 (New York: Pantheon Books, 1980), p. 197. 24. Joseph R. Betancourt, ‘Cross-cultural Medical Education: Conceptual Approaches and Frameworks for Evaluation’, Academic Medicine 78.6 (2003), pp. 560–9. 25. Kumas-Tan et al., ‘Measures of Cultural Competence’. 26. Smedley, Stith and Nelson, Unequal Treatment. 27. John Hoberman, Black and Blue: The Origins and Consequences of Medical Racism (Berkeley: University of California Press, 2012), p. 209. 28. Carla Boutin-Foster, Jordan C. Foster and Lyuba Konopasek, ‘Viewpoint: Physician, Know Thyself: The Professional Culture of Medicine as a Framework for Teaching Cultural Competence’, Academic Medicine 83.1 (2008), pp. 106–11.

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29. F. Daniel Duffy and Eric S. Holmboe, ‘Self-assessment in Lifelong Learning and Improving Performance in Practice: Physician Know Thyself’, JAMA 296.9 (2006), pp. 1137–9; Seth Donal Hannah and Elizabeth Carpenter-Song, ‘Patrolling Your Blind Spots: Introspection and Public Catharsis in a Medical School Faculty Development Course to Reduce Unconscious Bias in Medicine’, Culture, Medicine, and Psychiatry 37.2 (2013), pp. 314–39; Melanie Tervalon and Jann Murray-García, ‘Cultural Humility Versus Cultural Competence: A Critical Distinction in Defining Physician Training Outcomes in Multicultural Education’, Journal of Health Care for the Poor and Underserved 9.2 (1998), pp. 117–25. 30. Susan J. Shaw and Julie Armin, ‘The Ethical Self-fashioning of Physicians and Health Care Systems in Culturally Appropriate Health Care’, Culture, Medicine, and Psychiatry 35.2 (2011), pp. 236–61. 31. Sarah S. Willen, Antonio Bullon and Mary-Jo Del Vecchio Good, ‘Opening up a Huge Can of Worms: Reflections on a “Cultural Sensitivity” Course for Psychiatry Residents’, Harvard Review of Psychiatry 18.4 (2010), pp. 247–53. 32. Hoberman, Black and Blue, pp. 209–10. 33. Kumas-Tan et al., ‘Measures of Cultural Competence’. 34. Daniel R. Headrick, The Tools of Empire: Technology and European Imperialism in the Nineteenth Century (Oxford: Oxford University Press, 1981). For a critique of this argument, see David Arnold, Imperial Medicine and Indigenous Societies (Manchester: Manchester University Press, 1988). 35. Warwick Anderson, Colonial Pathologies: American Tropical Medicine, Race, and Hygiene in the Philippines (Durham, NC: Duke University Press, 2006). 36. Linda McDowell and Joanne Sharpe, A Feminist Glossary of Human Geography (London: Edward Arnold, 1999), p. 46. 37. Smedley, Stith and Nelson, ‘Unequal Treatment’; Michael G. Marmot, George Davey Smith, Stephen Stansfeld, Chandra Patel, Fiona North, Jenny Head, Ian White, Eric Brunner and Amanda Feeney, ‘Health Inequalities Among British Civil Servants: The Whitehall II Study’, Lancet 337.8754 (1991), pp. 1387–93. 38. Suman Seth, ‘Putting Knowledge in its Place: Science, Colonialism, and the Postcolonial’, Postcolonial Studies 12.4 (2009), pp. 373–88. 39. Good, American Medicine, p. 135. 40. Seth M. Holmes, Angela C. Jenks and Scott Stonington, ‘Clinical Subjectivation: Anthropologies of Contemporary Biomedical Training’, Culture, Medicine, and Psychiatry 35.2 (2011), pp. 105–12; Veena Das, Life and Words: Violence and the Descent into the Ordinary (Berkeley: University of California Press, 2007). 41. Hazel V. Carby, ‘White Woman Listen! Black Feminism and the Boundaries of Sisterhood’, in Houston A. Baker Jr and Manthia Diawara (eds), Black British Cultural Studies: A Reader (Chicago: University of Chicago Press, 1996), pp. 61–86. 42. Miranda Fricker, Epistemic Injustice: Power and the Ethics of Knowing (Oxford: Oxford University Press, 2007), p. 133. 43. The patient-centred movement has emphasised more fully integrating patient voices in the clinical dynamic while the health literacy movement has encouraged patients to learn more about the healthcare system so that they become ‘literate’ in the languages, practices and procedures of healthcare. 44. Donna Kate Rushin, ‘The Bridge Poem’, in Cherrie Moraga and Gloria Anzaldua (eds), This Bridge Called My Back: Writings by Radical Women of Color (Latham, NY: Kitchen Table/Women of Color Press, 1984).

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45. Fricker, Epistemic Injustice, p. 17. 46. Havi Carel and Ian James Kidd, ‘Epistemic Injustice in Healthcare: A Philosophical Analysis’, Medicine, Health Care and Philosophy 17.4 (2014), pp. 529–40. 47. Tejaswini Niranjana, Siting Translation: History, Post-structuralism and the Colonial Context (Berkeley: University of California Press, 1992). 48. Fricker, Epistemic Injustice, p. 159. 49. James A. Trostle, ‘Medical Compliance as an Ideology’, Social Science & Medicine 27.12 (1988), pp. 1299–308. 50. At University of Texas Medical Branch (UTMB), students can receive early concern notes for such broad-brush offences as being resistant or defensive to criticism, for resisting to make changes on feedback, for not functioning or interacting appropriately in groups, or for being insensitive to the needs, feelings or wishes of others, among other things. 51. Janelle S. Taylor, ‘Confronting “Culture” in Medicine’s “Culture of No Culture” ’, Academic Medicine 78.6 (2003), pp. 555–9; Renée C. Fox, ‘Cultural Competence and the Culture of Medicine’, New England Journal of Medicine 353.13 (2005), pp. 1316–19. 52. Good, American Medicine, p. 2. 53. Willen, Bullon and Good, ‘Opening up a Huge Can of Worms’; Taylor, ‘Confronting “Culture” in Medicine’s “Culture of No Culture” ’. 54. Rushin, ‘The Bridge Poem’. 55. Kathryn Nix, ‘What Obamacare’s Pay-for performance Programs Mean for Quality Health Care’, Heritage Foundation, 20 November 2013 (accessed 24 June 2015). 56. Cited in Thomas E. Kottke, ‘Medicine is a Social Science in its Very Bone and Marrow’, Mayo Clin Proc. 86.10 (October 2011), pp. 930–2. 57. Alan Bleakley, Julie Brice and John Bligh, ‘Thinking the Post-colonial in Medical Education’, Medical Education 42.3 (2008), pp. 266–70. 58. Frederic W. Hafferty, ‘Beyond Curriculum Reform: Confronting Medicine’s Hidden Curriculum’, Academic Medicine 73.4 (1998), pp. 403–7.

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32 THE ROOTS AND RAMIFICATIONS OF NARRATIVE IN MODERN MEDICINE Brian Hurwitz and Victoria Bates

‘It is not by chance or by mistake that we commonly speak of stories that happen to us or of stories in which we are caught up, or simply of the story of a life.’1 Paul Ricœur, 1991 ‘Throughout history people have interpreted the world around them and passed on lessons learned through myths, fairy tales, parables, and anecdotes. Medicine is no different, and most physicians can describe the first patient they saw with a particular condition more easily than they can recall the latest research paper in their field’.2 Phillipa Berman and Richard Horton, 2015

Introduction arrative became a concept of great versatility and fluidity in the second half of the twentieth century, configuring multi-dimensional understandings and meanings in healthcare. The literary and social theorist Martin Kreiswirth speaks of ‘a massive and unprecedented eruption of interest in narrative and in theorizing about narrative’ in the period,3 which resulted in stories and fragments of stories gaining significant conceptual traction in many discourses and practices. Not until narrative began to be credited with such multi-disciplinary capacities were claims for a pluripotential role in medicine explicitly formulated.4 Yet in attempting to respond to human needs incarnated in language, narrativity and medicine have long been co-implicated. If ‘the chief characteristic of human life is that it is always full of events which ultimately can be told as a story,’5 as Hannah Arendt argued, narrativity is a precondition of epitomising and reflecting on illness.6 Lauren Kassell in this volume finds cases and cures in clinical casebooks of the early modern period redolent of life stories and draws attention to historical work that has delineated how intertwined knowledge and narratives were in the medical observationes, historia and exempla of the period.7 Later accounts of disease evolved in various storied formats in relation to a wider culture of narrative forms,8 and medical students

N

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today devise their own narrative strategies to organise clinical information, espouse healthcare roles, and assimilate the emotional content of their studies.9 It is therefore not surprising that in 2015 the editors of The Lancet announced their decision to devote more publishing space to case reports in the distinctively narrative terms of the second epigraph to this chapter.10 We will trace the shifting place of narrative and narrative theorising within biomedicine, and in considering clinical cases, patients’ stories and illness narratives, the focus will not only be on texts but also on practices, conversations and activities, narrations which relay lived experiences and identities in the making in narrative terms.11 Following Roger Smith’s explication, we use story and narrative almost interchangeably ‘as the older word “history” with a lost syllable, while the German “Geschichte”, the Russian “istoria” and the French “histoire” all denote both history and story.’12 We take narrative to be the umbrella term for these storia and argue for their continuing valency in both medicine and ‘the emergent discipline’13 of the medical humanities.

Lived Experience and Medical Narratives In The Illness Narratives (1988), a study that helped shape thinking in the medical humanities, Arthur Kleinman centres storytelling on the experiencing subject and on a criss-cross of disciplines. Drawing on the notion of illness as a ‘biographical disruption’,14 Kleinman focuses on repeated attempts at sense-making in response to suffering: The illness narrative is a story the patient tells, and significant others retell, to give coherence to the distinctive events and long-term course of suffering. The plot lines, core metaphors, and rhetorical devices that structure the illness narrative are drawn from cultural and personal models for arranging experiences in meaningful ways and for effectively communicating those meanings.15 Expressive self-presentations and self-representations are narrative and reparative processes that offer diagnostic, therapeutic and interpersonal opportunities for helping people cope with illness and trauma, but their potential, Kleinman argues, cannot be fully realised without greater disciplinary porosity in medical research and practice: ‘Until anthropological, sociological, psychological, historical, ethical, and literary studies (the human sciences of medicine) become a substantial division of medical research, we will lack the knowledge needed to more systematically conceptualise illness experience and meanings.’16 Although eighteenth- and nineteenth-century epistolary practice could involve prolonged correspondence, ‘self-anatomies’ of nervous and physical complaints that profoundly disrupted the daily lives of sufferers, book-length personal accounts in which illness plays a conspicuous part begin to appear in a concerted way only in the second half of the twentieth century.17 Today, such accounts encompass fictional and non-fictional stories of ill health,18 poetry, drama, newspaper columns, films and online fora devoted to disease and injury, alterations in mood and sense of self,19 and feelings for ‘selfhood beyond the human’,20 which David Herman discusses in this volume in relation to autism.21

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The sociologist Arthur Frank recognises that such ‘telling does not come easy’.22 The sick are wounded not only in body but often also in voice, and Frank is all too aware of the commotions that a breakdown in health causes: ‘Caregivers are confronted not with an ordered sequence of illness experiences, but with a stew of panic, uncertainty, fear, denial, and disorientation.’23 Like Kleinman, he finds recounting illness reparative in generating new perspectives on the visceralities of illness and interrelationships of body, self and social functioning that sufferers may previously have taken for granted, and which severe illness disrupts. Recounting reorients, and whilst Frank distinguishes the narrative of an illness from the illness itself, he also recognises that such accounts frequently stand in for the experiential flux of ill health.24 To chart the experiences of painful illnesses and injuries over the past two and a half centuries, the historian Joanna Bourke turned to letters, memoirs, poems, prayers, songs, stories, images, textbooks, music and philosophical and scientific papers.25 Today pain is also expressed in films and television dramas, blogs, YouTube videos, graphic novels and social media, the form and content of which attract the attention of medical humanities scholars.

Narrative Forms and Structures in Medicine At its core, narrative ‘makes no commitment to truth or falsity, to a real or merely imaginary subject matter . . . [b]ut it does bear a commitment to connectedness and to structure’, argues the philosopher Peter Lamarque,26 properties medicine valorises in the construction of clinical cases. Cases unfold over time as a species of historical account, a type of explanation that the philosopher Louis Mink characterised as ‘grasping together . . . understanding which consists in thinking together in a single act . . . the complicated relationships of parts . . . experienced only seriatim’, a type of explanation that binds different elements together, conferring on the ensemble an order of significance.27 Although the notion of a clinical case as an entity is clearly discernible in the Hippocratic era,28 the historians of science, Volker Hess and Andrew Mendelsohn, argue that case reports attain their modern form as authoritative accounts only in the eighteenth century, when cases begin to be written about as more or less free-standing ‘collections of observable data’ linked to specific individuals.29 Prior to this period, case materials were much more diffusely embedded and distributed in texts than they are today. Clinical casebooks and compendia mingled elements from earlier with those of later observations, the patient’s medical history being recounted in terms of precepts and doctrines that did not necessarily distinguish between first- and second-hand observations and commentary.30 Only when such compendia were made accessible through indexing, which required rearrangement of contents according to keywords, did the details of similar types of case come to be clustered together, making possible comparisons between cases isolable from each other and from background information.31 Building on links between news and narrative, eighteenth-century case reports began to be published as free-standing accounts of medical findings, instances of special interest titled ‘a narrative’32 sometimes written in tones referencing an account

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of a life.33 Peter Logan’s work on hysteria in the late eighteenth and early nineteenth centuries demonstrated the ‘intricate association between medical theory and narrative form’,34 and supported Thomas Laqueur’s identification of a new literary aesthetic in the period, which brought together literary and scientific writings in a ‘new humanitarian narrative’35 licensing memoirists and novelists to focus on the intimate details of a life, to elicit compassionate responses from readers made witnesses to corporeal scenes previously confined to autopsy reports and case histories.36 A range of social, political, cultural and medical developments accompanied these changes, which began to challenge the value of narratively organised case reports. The invention of medical instruments yielded information novel to clinical texts grounded in traditional templates – diaries, commonplaces and testimonials – including sounds heard through the stethoscope, interior appearances made visible by the ophthalmoscope, and temperature levels read off the thermometer.37 Hess and Mendelsohn chart the ways in which medical texts began to tabulate and graph information along new dimensions and axes, ‘from particular narratives to a general narrative – from histories of patients to the general . . . history . . . [which] required passing through the nonnarrative form of the table [of data]’.38 New terminology arose that renarrativised the language of case reports, featuring concepts no longer rooted in patients’ own accounts of ill-health experience, and instead focused attention on signs rather than symptoms, on body parts rather than humours or temperaments, on diseases rather than people, and on data rather than sick individuals.39 Clinical encounters incorporated a new language of observation and measurement, and sought – not always successfully – to reduce uncertainty by decentring the place of the verbal story in clinical work.40 But rather than removing stories altogether from medical settings, changes in the contents of case description shifted their meaning, and in the twentieth century older narrative forms came to be reassessed. Attempts to understand the psychological and social dimensions of illness, to value patients’ views as part of a wider interest in recovering marginal voices, re-emerged in fields such as social medicine and medical ethics; and after the founding of patient organisations and subsequent appearance of consumer health movements, the patient and their account (rather than solely the disease, disease technologies and the medical case) regained the centre of attention.41 To begin with, this shift was not understood in narratological terms. Two of the most important mid-twentieth-century thinkers, Michael and Enid Balint, worked with London general practitioners to encourage psychoanalytically informed discussion of doctor–patient relationships. The Doctor, His Patient and the Illness (1957), their first account of such groups, sought to frame the clinical work of general practitioners in dialogue and preparedness to examine the emotional dynamics of consultations through sustained focus on case stories.42 Accounts by patients also came to attention in quite different settings, in studies which reported that three-quarters of people referred to hospital outpatient facilities could be diagnosed by careful attention to the history recounted in the clinic, the results of examination and investigation being far less contributory.43 Such findings bolstered Hermann Blumgart’s mid-century injunction, announced in the pages of the New England Journal of Medicine, to ‘Listen to the patient’s story – he is

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telling you the diagnosis,’ a call intended to shore up the position of history-taking in the clinic, then threatened by over-reliance on medical investigations.44 The nature of medical consultations also became a focus of study as part of the growing interest in everyday discourses. William Labov and Joshua Waletzky, sociolinguists of the 1960s, studied verbal accounts of personal experience,45 matched clauses of story talk with events and situations, and started to speak of ‘narratives of personal experience’.46 The social psychologist, Elliot Mishler, and medical educators, Patrick Byrne and Barrie Long, adopted similar methods to study sequences of talk and pause in clinical settings.47 They found hospital clinics to be sites of linguistic juncture: interruptions of patients attempting ‘to say more than . . . asked for often in the form of stories’,48 fragmented listening to people with different world views, and patients, carers and doctors seemingly locked in asymmetrical relationships that ‘placed the doctor on top’.49 Oliver Sacks found himself on the receiving end of such half-listening attention following a severe leg injury, about which he wrote a memoir, A Leg to Stand On (1984). Already well known for Migraine: The Evolution of a Common Disorder (1973) and Awakenings (1973),50 both of which featured extended clinical cases, Sacks had been influenced by the writings of the nineteenth-century physician, Edward Liveing51 and the Russian neuropsychologist, Aleksandr Luria.52 He had found Luria’s clinical cases so redolent of ‘pathos, poignancy and drama’ that on first reading them he believed he was immersed in biographies, later calling them ‘non-fiction novels’.53 In Awakenings, Sacks sought to develop ‘clinical tales’ that would evoke ‘the real and full presence of the patients themselves, the ‘feeling’ of their lives, their characters, their illnesses, their responses – the essential qualities of their strange situation’, and to actualise through ‘narrative and reflection . . . proliferation of images and metaphors . . . remarks, repetitions, asides, and footnotes . . . the landscapes of being in which these patients reside’.54 Sacks’s memoir of his broken leg focused on loss of proprioception in the injured limb and his profound alienation from it, which involved a breakdown of memory, thinking and will: ‘not just a lesion in my muscle but a lesion in me’,55 he explained. In keeping with previous works, Sacks’s account of the effects of his injury evoked a ‘landscape of altered being’ that transcended the repeated assertions of his hospital attendants that nothing other than damage to his leg muscle and bone was the matter with him. Sacks was able to take sufficient account of his lived experience to deconstruct his medical training and thinking, and challenge the constraints and limitations of conventional case descriptions.56 In the preface to the book he argued that: the case as a genre is a form of natural history . . . [that] tell[s] us nothing about the individual and his history; . . . nothing of the person, and the experience of the person, as he faces, and struggles to survive his disease. There is no ‘subject’ in a narrow case history; . . . To restore the human subject as the center – the suffering, afflicted, fighting, human subject – we must deepen a case history to a narrative or tale; only then do we have a ‘who’ as well as a ‘what’, a real person, a patient, in relation to disease.57

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Blurring the boundary between clinical case reports and memoirs, Sacks’s tales offered portraits of the ill in the midst of their disease. Not only was he able to develop ‘thick descriptions’ of people in sufficient, situated detail to ground medical judgements about them,58 he also brought a moral and aesthetic responsiveness to bear on how to understand the people for whom he was responsible, both clinically and in his writing about them in ways more familiar to life-writing and literary narrative than to the genre of the case report.59

The Development of Narrative Methods in Modern Medicine The application of narrative theory to patients’ verbal ‘stories’ and ‘histories’ in the clinic is a relatively recent form of narrative method, and by no means the only one of significance for medical practice. In the late twentieth century, interest in the relationship between medicine, health and narrative centred on studies in the social sciences (understanding how people frame and understand health and illness), and on literature and medicine (representations of health and illness within medicine and culture). Sociological fieldwork offered ethnographic frameworks and models for understanding narrative processes operative in many healthcare practices. In the 1990s, for example, Paul Atkinson, who would later be critical of the ways in which narrative came to be deployed in healthcare research,60 found stories an apt way to characterise medical enactments: ‘I have been struck by the need to preserve the form of the talk and interaction . . . narratives and arguments which are not captured adequately by the accumulation of short gobbets of talk,’ he wrote.61 Introducing an ethnographic study of haematology services in the UK and USA, he reworked his field notes, reporting that he had become preoccupied with aspects of the rhetoric of medical work and medical instruction . . . rhetorical devices used to construct and convey the cases that provided the basis for so much medical discussion. On re-reading my own field data I was forcibly struck – as I had not been when I first analysed them – by the presence of various narrative and descriptive methods that had been used by clinicians to generate and reproduce medical knowledge . . . instances where surgeons artfully created stories about patients and their conditions . . . akin to mysteries or cliffhangers, sometimes morality tales of success and failure . . . One could start to think in terms of an ethnopoetics of medical work.62 Here we see narratives undertaking more than a configuring or figuring-out role: as components of an ‘ethnopoetics’, they express aesthetic and affective aspects of medical understanding. The philosopher David Velleman likens the beginning of a story to ‘an itch that demands scratching’, the middle sections ‘postponement of the stimulus reduction by obstacles and misdirected efforts . . . and the end . . . the satisfying discharge that pacifies, if only temporarily.’63 The suspenseful dramas Atkinson saw enacted in case presentations choreograph cadences of arousal and resolution together with medical understanding as instances of ‘fit’ between clinical work and narrative types familiar to other cultural domains.64

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Medical education developed some of the first practical responses to interest in the inter-relationships between cases, patients’ stories and illness narratives, particularly in the US. It was in this context that literature and medicine came to be a particular focus of medical engagement, both with fictional accounts of illness and real-life illness narratives. Although these initiatives developed unevenly, one study estimated that, by 1994, approximately a third of US medical schools employed faculty in the field of literature and medicine.65 Many courses focused on close reading, often in the service of a practical outcome of clinical care, rather than on engagement with narrative theory.66 Others moved away from literature to engage with narrative as part of a multi-disciplinary clinical method, albeit with the focus still on instrumental value, which limited the degree to which medical education could grapple with the complexities of narrative form and literary theory. In an interview, Kathryn Montgomery has observed that US medical education promoted skills that can be described as hermeneutic; the skills of interpretation, making sense of things – all very valuable for future clinicians. And if narrative has come to dominate it more recently, it’s not because history can’t do it as well, it’s that history is perhaps less easy to teach in a new and different way that is better situated for practical, clinical students.67 Even before the emergence of narrative medicine as a nameable entity, patients’ stories were becoming increasingly central to medical contexts. While many contexts demanded an instrumental view of the patient’s account, servicing improved doctor– patient relations and better diagnosis, others supported looking beyond biological and diagnostic tools towards methods that opened up personal space and emotional exploration in clinical encounters based on richer clinical dialogues.68 Rita Charon coined the term narrative medicine to refer to medicine practiced with the narrative skills of recognising, absorbing, interpreting, and being moved by the stories of illness . . . . Along with their scientific expertise, doctors need the expertise to listen to their patients, to understand as best they can the ordeals of illness, to honour the meanings of their patients’ narratives of illness, and to be moved by what they behold so that they can act on their patients’ behalf.69 The approach she articulated in Narrative Medicine: Honoring the Stories of Illness (2006) is predicated on a multi-modal and polymorphous notion of narrative: As a living thing, narrative has many dimensions and powers. The novelist values its creative force; the historian relies on its ordering impulses, the autobiographer redeems its link to identity . . . Narrative structures, such as novels, newspaper articles, and letters to friends, enable us to recount events, to depict characters, to suggest causes for events, to represent the passage of time, to use metaphor to convey meanings otherwise elusive. As an instrument for self-knowledge and communion, narrative is irreplaceable.70

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Where Drew Leder had earlier called for a nuanced hermeneutics that would recognise multiple healthcare texts – the patient’s experience, the doctor’s interpretation of the ‘problem’, a ‘reading’ of bodily signs, and ‘instrumental texts’ arising from technological investigations71 – Charon emphasises the critical role of ‘narrative competence’ in clinical medicine, drawing on performance,72 discourse73 and human cognitive processes.74 Her advocacy implies not simply the use of narrative but a practice ‘fortified’ by ‘the capacity to recognize, absorb, metabolize, interpret, and be moved by stories of illness’.75 Whether such a competence can be fully characterised and made operational, or is as much a philosophy of healthcare practice as it is a set of specifiable skills that cohere, the notion of fortifying practice with a bricolage of narrative methods, in place of narrative being the handmaiden to better diagnosis, opens up new roles for narrative awareness in clinical settings.76 Charon’s narrative competence ‘honor[s] the meanings’ (in the multiple) of illness, and is achieved by making writing and reading, and narratological understanding integral components of clinical method. To honour meaning in this way requires accurate listening, soliciting and precisely representing what is going on in a clinical situation, and the ability on the part of the clinician to manage the emotional and perspectival changes emerging from entering into and stepping out of healthcare scenarios.77 In Charon’s account, this responsiveness is engendered through learning to read – hear, observe, self-observe and interpret – to write and depict clinical situations in new ways. When doctors or nurses listen to patients in this way, related to what psychiatrists call ‘listening with the third ear,’ they will ask themselves readerly questions: ‘Why is she telling me this now? Why do I feel irritated or distracted or sad as I listen to her? Why did she start with the end of the story and tell it backwards?78 Underpinning the approach is an ethical stance of accompaniment: devoting enough time to hear fully what patients have to say, however digressive by conventional medical standards this may turn out to be, and becoming a witness to suffering framed as a form of ‘beholding’ that takes in the many aspects of ill health. To gain this capacity, ‘[t]raining is textual and interior,’79 she writes, and grounded in enlarging clinicians’ absorptive capacities, reflective discernment and self-knowledge.80 This programme – sometimes referred to as the ‘Narrative Medicine movement’81 – is predicated on reading and writing practices that promote a simultaneity of thinking and feeling that clinical work often seems to distract apart.82 For the writer and clinician Terry Holt, the principal way in which skills honed through textual engagement apply to clinical practice is through self-observation and reflection, which grants practitioners ‘the strength, the right – and the obligation – to give people care’.83 For Holt, self-observation supports responding to and ‘experiencing’ and ‘analyzing’ that response, ‘tracking it to its sources in narrative convention, in language, in culture and psychology’.84 This is a vision of clinical work anchored in reflectiveness translated into a healthcare attentiveness that strengthens the capacity of practitioners ‘to look beyond the biological mechanisms at the centre of conventional approaches to medical practice, towards domains of thought and ways of telling that focus on language and

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representation, on the emotions and relationships’.85 Such narrative-based practices recognise that people who are ill or think themselves ill locate concerns and symptoms – often disjointedly – in interpersonal and social networks of meaning that are in differing stages of formation.86 It is an approach that does not dispense with scientific medicine but recognises the place of narratives in science; the challenge becomes how best to deploy narratives contextually in ways attuned to the needs of individuals.87 In some clinical circumstances, purely biomedical responses may remain appropriate, writes John Launer, the author of Narrative-based Primary Care (2006): If a patient asks ‘is this a bunion and do I need an operation?’, the best way to reply may sometimes simply be ‘yes’. However . . . [a]n opening story that seems brief and fragmentary is more likely to be the prologue to a far more elaborate one, steeped in personal meaning . . . ‘I slept really badly last night because I was so worried about my job interview, then on my way to the interview I was so distracted that I tripped over my bad toe, was in agony, made a mess of the interview, my husband is furious because we need the money.’88 In this snippet of a report a question elicits a straightforward response, but it begins to be reconsidered as the context and significance of the woman’s failure at her job interview comes into view. The account of the consultation takes on a semi-biographical aspect, medical attention moving to personal and interpersonal terrains, where the bunion – the entrée to consulting – may (or may not) be the central issue. It is possible to imagine the discussion delving further into financial matters, previous job interviews, and the sort of work the patient is looking for. Should the bunion be identified as the main concern, or is it anxiety, poor sleeping, her capacity to become distracted (and trip over) or something else that is the central issue to consider? In narrative-based practice the drive is to make sense of the events in question, whether (and how) they may be connected, and which elements may be paramount. The approach is quite a long way from reading texts, literary or otherwise, its consideration being conversational and ethnographic in stance and psychological in feel. Launer’s approach aims to understand clinical work through detailed conversational reconstruction, for which careful account needs to be taken of how everyday narratives are put together and interactionally framed and told. Building on Howard Brody’s appeal for medical accounts to be co-constructed with patients,89 Launer promotes ‘collaborative attempts to agree on a useful and coherent story’, which he terms narrative inquiry.90 His is a notion of storied investigation that encompasses descriptions and conversations of situations people are caught up in, the aim being to test out whether stories can be agreed that help resituate patients in networks of meaning that offer more hopeful opportunities.

Fallout and Future of Narrative in Medicine In tracing the roots and ramifications of narrative in relation to healthcare, we have not adopted an all-encompassing definition or even a minimum set of conditions for

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what counts as a story. We have noted the way in which the terms have been used in relation to medical discourse and have mapped their invocations in different contexts, most dominantly perhaps in reference to the patient’s account of a complaint, the medical history, and its reconstruction in a clinical account of a case. Cases are not generally accounts of illness as felt and lived from within, although they frequently include snippets of first-person accounts deriving from the patient’s medical history. Standardly, case reports are terse outsider views of a person’s situation recounted from a distinctively medical or psychiatric standpoint, rendered in detached, depersonified and factual terms, Sacks’s clinical tales revealing the uneasy tension that subsists between cases embodying a highly medical(ised) account of a patient’s situation and those cast in terms of a life story. More recently, story and narrative have referenced conversations and interactions between patient, carer and health practitioner. However haltingly told, the patient’s story for Frank stands outside this nexus: it is not an account in thrall to the values, categories or interview procedures of modern medicine.91 Rather, it is a reflection ‘on body, self, and the destination that life’s map leads to’,92 precipitated by ill health, an act that undertakes autobiographical work that may involve coming to terms with loss and mourning, altered capabilities and social functioning. In writing his own memoir of a heart attack and cancer, Frank found himself writing ‘for the times I had to remain silent and for those who are still silent’. Later editions of At the Will of the Body (1991) include an afterword, in which he acknowledges the many letters he received when the book first appeared, thanking him for putting into words aspects of others’ experiences. The passivity that so frequently accompanies severe illness is made all the more profound as a result of the language to which patienthood is subjected by modern healthcare, which has been colonised by objectivist interests and concepts that threaten to eclipse the communal language of the lifeworld, the everyday concerns of bodily and psychic experience. Patient organisations today call for accounts of the everyday world of illness experience to help forge a shared culture and identity for their membership.93 Some fora express resistance to medical discourse, attracting contributions from people who feel misunderstood by the mainstream health service, who seek to reformulate their experience and commission new research that can generate alternative understandings of their problems. Social and commercial entrepreneurs have additional reasons for searching out healthcare and illness experiences. Healthtalk.org, a database of patient experience created through a partnership between a charity and a health services research group in Oxford, garners patient stories for research and educative purposes, in order to further recognition of medical conditions, care pathways, symptom patterns, patient and carer expectations, and treatment options. Employing a suite of qualitative and life-story methods, Healthtalk.org collects information by interview of representative samples of people with medical conditions, which it arranges thematically and posts online as organised transcripts and audiovisual clips, its research generating grounded knowledge of patient experience useful to public and professionals alike, and published in peer-reviewed journals.94

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PatientsLikeMe, a Boston-based for-profit company ‘but not one with a “just for profit” mission’, provides a disease-focused, social research platform for patients to ‘share and learn from real-world, outcome-based health data’. It has developed a large following of people wishing to contribute their own accounts of ill health to scientific research and lobby for better healthcare. PatientsLikeMe appeals for patient stories – it especially draws interest from people with rare conditions – from which it extracts and validates data that bear on specific questions, and in this way, for example, has examined whether taking the unlicensed drug lithium carbonate can alter the deteriorating course of amyotrophic lateral sclerosis.95 These organisations appeal to the rhetoric of stories to garner ill-health experiences, but in the case of PatientsLikeMe the drive is to extract data for research that retain little of the voices of participants – upset, anger, protest – or of their individual stories. The data are processed with the needs and claims of members in mind, but the assumptions and methods employed denarrativise the contents and it is unclear how the originating stories are valued in their entirety and on their own terms. By contrast, although the approach of Healthtalk.org risks cutting across aspects of the stories it works with – extracting and highlighting certain themes and ignoring other elements may annul an account’s internal relatedness – many of its outputs retain the voice, mood and some of the narrativity of the collected materials.96 Both these initiatives hardly register the uneasy relationship between patient voice and mainstream medicine highlighted by Frank. Yet, in different ways, Healthtalk.org and PatientsLikeMe empower patients and carers. So, too, do online organisations that collect patient and carer voices for more consumer-oriented purposes: to convey the gist of their experiences to relevant healthcare staff, add them to user service ratings, and make the amalgamated information more widely available. Some sites offer patient-held medical records and access to e-networks, promising ‘true patient-centred care’; one organisation appeals to people to ‘Tell your story . . . [and] make a difference by sharing your story with us and we’ll make sure your story reaches the right person.’97 This call appears on a website that has collected over 110,000 accounts. The site has become a repository of conversational and epistolary interactions about what has happened to patients in reference to healthcare norms, standards of care, patient safety, waiting times, the courtesy and caring qualities of healthcare staff, and hopes for more responsive health services. The data are arranged by encounters in named facilities, where story colloquially and elastically stands not only for the personal and the human in modern healthcare but also for a rebalancing of power in patient–professional relations in favour of patient-consumers. The format of story entry is managed by headings such as: ‘What is your story about?’, ‘What happened?’ and ‘What conditions, tests and treatments are in your story?’, and provides testimonies UK healthservice managers find helpful in commissioning health services.98 There is little sign that these accounts are valued beyond the what that they report, as opposed to how they knit experience together,99 a distinction critical to understanding why stories work for people and on people.100 They appear to be almost entirely data-driven vehicles solicited for very particular purposes that cut

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across Frank’s proposal for a ‘sociology of witness’101and the foundational position developed in The Wounded Storyteller, in which he argues that ‘people’s stories are not “data” to support various propositions that I advance. Instead, the stories are the materials that I use to model theorizing – and living – with stories.’102 We have seen that narrative is deployed in many healthcare contexts in variable and loosely patrolled ways, in threads of usage and applicability that predate the explosion of interest in narrative theorising of the second half of the last century. Although it continues to occupy a contested position within the medical humanities, there is little sign of the traction narrative has gained diminishing.103 On the contrary, its role is vital, clinically methodological as well as explanatory of complex, variable, time-dependent human circumstances. In recognising the human at the centre of healthcare encounters and posing questions about how these qualities are to be understood and represented, narrative fulfils a critically important symbolic role. Illness narratives repeatedly indicate that medical problems ramify far beyond healthcare,104 which it is the task of the medical humanities to comprehend and interpret. Despite concern that the rhetorical appeal of narrative may be out of control,105 disciplines that hold its ordering capacities central to their analysis and commentary recognise how ‘narrative resists straightforward and agreed-upon definitions and conceptualizations’,106 a resistance that acknowledges the multiplicity of roles stories continue to play in human affairs.

Further Reading Martin Kreiswirth, ‘Merely Telling Stories? Narrative and Knowledge in the Human Sciences’, Poetics Today 21 (2000), pp. 293–318. Peter Lamarque, The Opacity of Narrative (London and New York: Rowan & Littlefield, 2014), p. 17. Neil Vickers, ‘Illness Narrative’, in Adam Smyth, The Cambridge History of Autobiography, 9th edn (Cambridge: Cambridge University Press, 2016). John Harley Warner, ‘The Aesthetic Grounding of Modern Medicine’, Bulletin of the History of Medicine 88 (2013), pp. 1–47. John Harley Warner, ‘The Uses of Patient Records by Historians – Patterns, Possibilities and Perplexities’, Health and History 1 (1999), pp. 101–11.

Notes 1. Paul Ricœur, ‘Life in Quest of Narrative’, in David Wood (ed.), On Paul Ricœur: Narrative and Interpretation (London: Routledge, 1991), p. 29. 2. Phillipa Berman and Richard Horton, ‘Case Reports in The Lancet: A New Narrative’, Lancet 385 (2015), p. 1277. 3. Martin Kreiswirth, ‘Merely Telling Stories? Narrative and Knowledge in the Human Sciences’, Poetics Today 21 (2000), pp. 293–318. 4. The claim that literature could enhance wider cultural awareness on the part of doctors preceded a specific focus on narrative. Anthony Moore, ‘The Art of Medicine: A Missing Subject’, Medical Journal of Australia 2 (1975), pp. 27–8; Anthony Moore, The Missing

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Medical Text (Melbourne: Melbourne University Press, 1978); Robert Coles, The Call of Stories: Teaching and the Moral Imagination (Boston: Houghton Mifflin, 1989); and Robin Downie, ‘Literature and Medicine’, Journal of Medical Ethics 17 (1991), p. 98. 5. Hannah Arendt, The Human Condition (Chicago: University of Chicago Press, 1958), p. 72. 6. By narrativity we mean the qualities and conditions of ‘being a narrative or of presenting a story’. Oxford English Dictionary Online (accessed 17 April 2015). See also Gerald Prince, ‘Narrativehood, Narrativeness, Narrativity, Narratability’, in John Pier, José Angel and Garcia Landa (eds), Theorizing Narrativity (Berlin: Walter de Gruyter, 2008), pp. 19–28 (p. 19). 7. Lauren Kassell, ‘Paper Technologies’, in this volume, pp. 120–35. 8. Some physicians played on the narrative dimensions of their craft for serious medical purposes. See Bernard Mandeville, Treatise of the Hypochondriack and Hysterick Diseases in Three Dialogues, 3rd edn (London: J. Tonson, 1730), pp. 19–20; and John Coakley Lettsom (ed.), The Works of John Fothergill (London: Charles Dilly in the Poultry, 1784), p. 366. For the role of narrative in case description in this period, see Brian Hurwitz, ‘Urban Observation and Sentiment in James Parkinson’s Essay on the Shaking Palsy’, Literature and Medicine 32 (2014), pp. 74–104. Nicolas Pethes has noted that one of the most popular genres in late eighteenth- and early nineteenth-century journals of all sorts was the case history. See Nicolas Pethes, ‘Serial Individuality: Eighteenth-Century Case Study Collections and Nineteenth-Century Archival Fiction’, in Matt Erlin and Lynne Tatlock (eds), Distant Readings: Topologies of German Culture in the Long Nineteenth Century (Rochester, NY: Camden House, 2014), pp. 115–32. 9. Byron J. Good and Mary-Jo Del Vecchio Good, ‘ “Fiction” and “Historicity” in Doctors’ Stories’, in Cheryl Mattingly and Linda C. Garro (eds), Narrative and the Cultural Construction of Illness and Healing (Berkeley: University of California Press, 2000), pp. 50-69; Byron J. Good, Medicine, Rationality and Experience: An Anthropological Perspective (Cambridge: Cambridge University Press, 1994). 10. Berman and Horton, ‘Case Reports in The Lancet’, p. 1277. 11. Arthur W. Frank, Letting Stories Breathe: A Socio-narratology (Chicago: University of Chicago Press, 2010). 12. Roger Smith, Being Human: Historical Knowledge and the Creation of Human Nature (New York: Columbia University Press, 2013), p. 174. 13. Claire Charlotte McKechnie, ‘Anxieties of Communication: The Limits of Narrative in the Medical Humanities’, Medical Humanities 10 (2014) (accessed 28 October 2014). 14. Michael Bury, ‘Chronic Illness as Biographical Disruption’, Sociology of Health and Illness 4 (1982), pp. 167–82. 15. Arthur Kleinman, The Illness Narratives (Oxford: Oxford University Press, 1988), p. 49. 16. Ibid., p. 266. 17. Neil Vickers, ‘Illness Narrative’, in Adam Smyth (ed.), The Cambridge History of Autobiography (Cambridge: Cambridge University Press, forthcoming 2016). 18. Anne Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography (West Lafayette, IN: Purdue University Press, 1993). 19. Arthur Frank speaks of illness precipitating ‘[a] self that has become what it never expected to’. ‘Illness as Autobiographical Work: Dialogue as Narrative Destabilisation’, Sociology 23.1 (2000), pp. 135–56.

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20. David Herman, ‘Trans-species Entanglements: Animal Assistants in Narratives about Autism’, in this volume, p. 465. 21. David Herman, ‘Trans-Species Entanglements’. See also Jonathan Cole and Shaun Gallagher, ‘Narrative and Clinical Neuroscience: Can Phenomenologically Informed Approaches and Empirical Work Cross-fertilise?’, in this volume, pp. 377–94. 22. Arthur W. Frank, The Wounded Storyteller (Chicago: University of Chicago Press, 1995), p. xii. 23. Arthur Frank, At the Will of the Body (New York: Houghton Mifflin, 1991), p. 49. 24. See Clifford Geertz in Victor W. Turner and Edward M. Bruner (eds), The Anthropology of Experience (Urbana and Chicago: University of Illinois Press, 1986), pp. 373–80 (p. 373). 25. Joanna Bourke, The Story of Pain, From Prayer to Painkillers (Oxford: Oxford University Press, 2014). 26. Peter Lamarque, The Opacity of Narrative (London and New York: Rowan & Littlefield, 2014), p. 17. 27. Louis Mink, ‘History and Fiction as Modes of Comprehension’, in Brian Fay, Eugene O. Golob and Richard T. Vann (eds), Historical Understanding (Ithaca, NY: Cornell University Press, 1987), pp. 42–88 (p. 50). 28. Brian Hurwitz, ‘Form and Representation in Clinical Case Reports’, Literature and Medicine 25.2 (2006), pp. 216–40. 29. Lauren Kassell, ‘Casebooks in Early Modern England: Medicine, Astrology, and Written Records’, Bulletin of the History of Medicine 88.4 (2014), pp. 595–625 (p. 604). 30. Gianna Pomata, ‘Sharing Cases: The Observationes in Early Modern Medicine’, Early Science and Medicine (2010), pp. 193–236. 31. Volker Hess and J. Andrew Mendelsohn, ‘Case and Series: Medical Knowledge and Paper Technologies, 1600–1900’, History of Science 48 (2010), p. 290. 32. From the eighteenth century, clinical case reports, especially if long and complex, could be prefaced as ‘narratives’ in their titles. See Brian Hurwitz, ‘Narrative [in] Medicine’, in Paola Spinozzi and Brian Hurwitz (eds), Discourses and Narrations in the Biosciences (Göttingen: Vandenhoeck & Ruprecht Unipress, 2011), pp. 13–30. The practice of equating narrative with a factual account extends beyond medicine: Major Holmes, ‘A Narrative Concerning the Success of Pendulum-Watches at Sea for the Longitudes’, Philosophical Transactions of the Royal Society 1 (1665), pp. 13–15. 33. Hurwitz, ‘Narrative [in] Medicine’, pp. 13–30. 34. Athena Vrettos, ‘Review: Peter M. Logan, Nerves and Narrative: A Cultural History of Hysteria in Nineteenth-Century British Prose (Berkeley: University of California Press, 1997)’, Victorian Studies 41 (1997), pp. 125–7. 35. Thomas W. Laqueur, ‘Bodies, Details, and the Humanitarian Narrative’, in Lynn Hunt (ed.), The New Cultural History (Berkeley and Los Angeles: University of California Press, 1989). 36. Lisa Herschbach, ‘ “True Clinical Fictions”: Medical and Literary Narratives from the Civil War Hospital’, Culture, Medicine and Psychiatry 19 (1995), p. 185; and Brian Hurwitz, ‘Clinical Cases and Clinical Case Reports: Boundaries and Porosities’, in Alessandra Calanchi, Gastone Castelloni, Gabriella Morisco and Giorgio Turchetti (eds), The Case and the Canon: Anomalies, Discontinuities, Metaphors Between Science and Literature (Göttingen: Vandenhoeck & Ruprecht Unipress, 2011), pp. 45–58. 37. Kassell, ‘Casebooks in Early Modern England’, p. 615. 38. Hess and Mendelsohn, ‘Case and Series’, pp. 287–314.

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39. In the 1970s such trends came to be associated with the rise of a so-called ‘medical gaze’; Michel Foucault, The Birth of the Clinic (London: Tavistock, 1973); David Armstrong, ‘The Rise of Surveillance Medicine’, Sociology of Health and Illness 17 (1995), pp. 393– 404. On the rise of statistics in the nineteenth century, see Ian Hacking, The Taming of Chance (Cambridge: Cambridge University Press, 1990). 40. John Harley Warner questions the idea that science expunges narrative. See his ‘The Aesthetic Grounding of Modern Medicine’, Bulletin of the History of Medicine 88 (2013), pp. 1–47; and Sara Maria Sliter-Hays, ‘Narratives and Rhetoric: Persuasion in Doctors’ Writings about the Summer Complaint, 1883–1939’, unpublished doctoral thesis, University of Texas at Austin (2008). 41. The first UK patient organisation was announced by H. G. Wells, the co-founder of the British Diabetic Association, in a letter to The Times in February 1934. In it, Wells spoke of ‘[s] omething psychologically and socially valuable [having] been discovered: the latent solidarity of people subject to a distinctive disorder’. Diabetes UK website (accessed 1 March 2015). 42. Michael Balint, The Doctor, His Patient and the Illness (London: Pitman Medical, 1957). 43. J. R. Hampton, M. J. G. Harrison, J. R. A. Mitchell, J. S. Prichard and C. Seymour, ‘Relative Contributions of History-Taking, Physical Examination, and Laboratory Investigation to Diagnosis and Management of Medical Outpatients’, British Medical Journal 2.5969 (1975), pp. 486–9; M. C. Peterson, J. H. Holbrook, D. von Hales, N. L. Smith and L. V. Staker, ‘Contributions of the History, Physical Exam and Laboratory Investigation in Making Medical Diagnoses’, Western Journal Medicine 156 (1992), pp. 163–5. 44. Herman L. Blumgart, ‘Caring for the Patient’, New England Journal of Medicine 270 (1964), pp. 449–56. 45. William Labov and Joshua Waletzky, ‘Narrative Analysis: Oral Versions of Personal Experience’, in June Helm (ed.), Essays on the Verbal and Visual Arts (Seattle: University of Washington Press, 1967), pp. 12–44. 46. William Labov, ‘The Transformation of Experience in Narrative Syntax’, in Language in the Inner City: Studies in Black English Vernacular (Philadelphia: University of Pennsylvania Press, 1972), pp. 354–96 (p. 354). 47. Elliot G. Mishler and Nancy E. Waxler, ‘Functions of Hesitations in the Speech of Normal Families and Families of Schizophrenic Patients’, Language and Speech 13 (1970), pp. 102–17; Elliot G. Mishler, Research Interviewing: Context and Narrative (Cambridge, MA: Harvard University Press, 1986); Patrick Byrne and Barrie L. Long, Doctors Talking to Patients (London: Her Majesty’s Stationery Office, 1976). 48. Elliott Mishler, ‘Patient Stories, Narratives of Resistance and the Ethics of Humane Care: A la Recherche du Temps Perdu’, Health 9 (2005), p. 437. 49. Gareth Williams, ‘The Genesis of Chronic Illness: Narrative Reconstruction’, Sociology of Health and Illness 6 (1984), pp. 175–200. 50. Oliver Sacks, Migraine: The Evolution of a Common Disorder (London: Faber, 1973); Oliver Sacks, Awakenings (London: Duckworth, 1973). 51. Edward Liveing, On Megrim, Sick-headache, And Some Allied Disorders. A Contribution to the Pathology of Nerve-storms (London: J & A Churchill, 1873). 52. Aleksandr Romanovich Luria, The Mind of a Mnemonist: A Little Book About a Vast Memory, trans. Lynn Solotaroff (Cambridge, MA: Harvard University Press, [c. 1968] 1987); Aleksandr Romanovich Luria, The Man with a Shattered World: The History of a Brain Wound, trans. Lynn Solotaroff (London: Jonathan Cape, 1973).

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53. Dr Oliver Sacks – Narrative and Medicine: The Importance of the Case History (accessed 2 May 2015). 54. Sacks, Awakenings, p. i. 55. Oliver Sacks, A Leg to Stand On (New York: Touchstone, 1998), p. 46. 56. Arthur Frank, The Wounded Storyteller, p. 110. See also Frank’s comments in Emma Jones and E. M. Tansey (eds), The Development of Narrative Practices in Medicine c. 1960–c. 2000. Wellcome Witnesses to Contemporary Medicine, vol. 52 (London: Queen Mary University of London, 2015), p. 19. 57. Sacks, A Leg to Stand On, p. viii. 58. Gilbert Ryle, ‘The Thinking of Thoughts: What is “le Penseur” Doing?’, in Gilbert Ryle (ed.), Collected Papers, vol. II: Collected Essays 1929–1968 (London: Hutchison, 1971), pp. 482–96. 59. Julia Epstein, Altered Conditions: Disease, Medicine, and Storytelling (New York: Routledge, 1995). 60. Paul Atkinson, ‘Illness Narratives Revisited: The Failure of Narrative Reductionism’, Sociological Research Online (accessed May 2015). See also Paul Atkinson, ‘Narrative Turn or Blind Alley?’, Qualitative Health Research 7 (1997), pp. 325–44. 61. Paul Atkinson, Medical Talk and Medical Work: The Liturgy of the Clinic (London: Sage, 1995); Atkinson, The Clinical Experience: The Construction and Reconstruction of Medical Reality (Farnborough: Gower, 1981), p. viii. 62. Atkinson, Medical Talk and Medical Work, p. 4. 63. David Velleman, ‘Narrative Explanation’, Philosophical Review 112.1 (2003), pp. 1–25. 64. Kathryn Montgomery Hunter, Doctors’ Stories: The Narrative Structure of Medical Knowledge (Princeton: Princeton University Press, 1991); and Brian Hurwitz, ‘Narrative and the Practice of Medicine’, Lancet 356 (2000), pp. 2086–9. 65. Kathryn Montgomery Hunter, Rita Charon and John L. Coulehan, ‘The Study of Literature in Medical Education’, Academic Medicine 70 (1995), p. 788. 66. On ‘instrumental thinking’ in medicine, see Jeffrey P. Bishop, ‘Rejecting Medical Humanism: Medical Humanities and the Metaphysics of Medicine’, Journal of Medical Humanities 29 (2008), pp. 15–25. 67. Jones and Tansey, The Development of Narrative Practices in Medicine, p. 32. 68. See, for example, Trisha Greenhalgh and Brian Hurwitz (eds), Narrative Based Medicine: Dialogue and Discourse in Clinical Practice (London: BMJ Books, 1998). Although distinct from the medical humanities, narrative-based medicine and narrative ethics are often discussed as sub-fields of the medical humanities and emerged from similar concerns. See Brian Hurwitz, ‘Medical Humanities: Lineage, Excursionary Sketch and Rationale’, Journal of Medical Ethics 39 (2013), pp. 672–4. 69. Rita Charon, Narrative Medicine: Honoring the Stories of Illness (New York: Oxford University Press, 2006), p. 3. 70. Ibid., pp. 39–40. 71. Drew Leder, ‘Clinical Interpretation: The Hermeneutics of Medicine’, Theoretical Medicine 11 (1990), pp. 9–24. 72. See Barbara Herrnstein-Smith, ‘Narrative Versions, Narrative Theories’, in W. J. T. Mitchell (ed.), On Narrative (Chicago: University of Chicago Press, 1981), pp. 209–32. 73. Linguistic and structural aspects of narratives became the focus of scholarship as narratology and literary theory developed in the twentieth century. See Roland Barthes, Image,

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74.

75. 76.

77. 78. 79. 80.

81. 82. 83. 84. 85.

86. 87. 88. 89. 90. 91. 92. 93.

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Music, Text, ed. and trans. Stephen Heath (New York: Hill & Wang, 1977), pp. 79–124; Gérard Genette, Narrative Discourse Revisited, trans. Jane E. Lewis (Ithaca, NY: Cornell University Press, 1988), p. 19. In the twentieth century, narrative is seen as reflective of cognitive processes. Jerome Bruner, ‘The Narrative Construction of Reality’, Critical Inquiry 18 (1991), p. 6; Jerome S. Bruner, Acts of Meaning (Cambridge, MA: Harvard University Press, 1990); Jerome Bruner, Making Stories: Law, Literature, Life (New York: Farrar, Strauss & Giroux, 2002), p. 85; David Herman, Manfred Jahn and Marie-Laure Ryan, ‘Introduction’, in Herman, Jahn and Ryan (eds), Routledge Encycopaedia of Narrative Theory (London: Routledge, 2005), p. ix. Rita Charon, ‘What To Do with Stories: The Sciences of Narrative Medicine’, Canadian Family Physician 53 (2007), pp. 1265–7. Catherine Kohler Riessman and Jane Speedy, ‘Narrative Inquiry in the Psychotherapy Professions’, in D. Jean Clandinin (ed.), Handbook of Narrative Inquiry: Mapping a Methodology (London: Sage, 2007), pp. 426–56 (p. 430). Arthur Frank, ‘The Painter and the Cameraman: Boundaries in Clinical Relationships’, Theoretical Medicine 23 (2002), pp. 219–32. Charon, Narrative Medicine, p. 66. Ibid., p. 209. M. J. Devlin, B. F. Richards, H. Cunningham, U. Desai, A. Mutnick, M. A. Nidiry, P. Saha and R. Charon, ‘ “Where Does the Circle End?”: Representation as a Critical Aspect of Reflection in Teaching Social and Behavioral Sciences in Medicine’, Academic Psychiatry DOI 10.1007/s40596-014-0222-8 (accessed 22 April 2015). Terence E. Holt, ‘Narrative Medicine and Negative Capability’, Literature and Medicine 23.4 (2004), pp. 318–33 (p. 318). Charon, Narrative Medicine, pp. 208–9. Holt, ‘Narrative Medicine and Negative Capability’, p. 331. Ibid., p. 330. Emphasis in the original. Hurwitz, ‘Narrative [in] Medicine’, pp. 73–4; Brian Hurwitz, ‘Narrative and the Practice of Medicine’, Lancet 356:9247 (2000), pp. 2086–9; Brian Hurwitz, ‘Medicine, the Arts and Humanities’, Clinical Medicine 3 (2003), pp. 497–8; Brian Hurwitz, Vieda Skultans and Trisha Greenhalgh (eds), Narrative Research in Health and Illness (Oxford: Blackwell Publishing/BMJ Books, 2004). Ian R. McWhinney, ‘Are We on the Brink of a Major Transformation of Clinical Method?’, Canadian Medical Association Journal 135 (1986), pp. 873–8. Trisha Greenhalgh, ‘Narrative Based Medicine in an Evidence Based World’, in Greenhalgh and Hurwitz (eds), Narrative Based Medicine, pp. 247–65. John Launer, ‘Narrative-Based Supervision’, in Lucia Siegel Sommers and John Launer (eds), Clinical Uncertainty in Primary Care (New York: Springer, 2013), p. 149. Howard Brody, ‘My Story is Broken; Can you Help me Fix it?’, Literature and Medicine 13.1 (1994), pp. 79–92. Launer, ‘Narrative-Based Supervision’, p. 147. Emphasis in the original. Frank, At the Will of the Body, p. 7. Ibid., p. 114. See the ‘Share your story’ section on the UK Alzheimer Society website and the ‘Personal Stories’ section of the US Alzheimer’s Association website (both accessed 10 January 2015).

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94. Healthtalk.org (accessed 2 May 2015). It has given rise to over 100 research publications . 95. Patientslikeme (accessed 2 May 2015). Max Little, Paul Wicks, Timothy Vaughan and Alex Pentland, ‘Quantifying Short-Term Dynamics of Parkinson’s Disease Using Self-Reported Symptom Data from an Internet Social Network’, Journal of Medical Internet Research 15.1 (2013), p. e20; and Paul Wicks, Timothy E. Vaughan, Michael P. Massagli and James Heywood, ‘Accelerated Clinical Discovery Using Self-reported Patient Data Collected Online and a Patient-matching Algorithm’, Nature Biotechnology 29.5 (2011), pp. 411–14. 96. Sue Ziebland, Angela Coulter, Joseph D. Calabrese and Louise Locock, ‘Introduction’, in Ziebland, Coulter, Calabrese and Locock (eds), Understanding and Using Health Experiences: Improving Patient Care (Oxford: Oxford University Press, 2013), pp. 1–2. 97. Patient opinion ; iWantGreatCare ; PatientsKnowBest (accessed 2 May 2015). 98. CCG (accessed 12 May 2015). 99. Patrick O’Neill, Fictions of Discourse: Reading Narrative Theory (Toronto: University of Toronto Press, 1996), pp. 8–13. 100. Frank, Letting Stories Breathe, p. 2. 101. Frank, The Wounded Storyteller, p. 24. 102. Ibid., p. 28. 103. Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, Medical Humanities (2011) (accessed 28 October 2014]; John D. Arras, ‘Nice Story, But So What? Narrative and Justification in Ethics’, in Hilde Lindemann Nelson (ed.), Stories and Their Limits (New York: Routledge, 1997), pp. 65–88; Miriam Solomon, ‘Epistemological Reflections on the Art of Medicine and Narrative Medicine’, Perspectives in Biology and Medicine 51 (2008), pp. 406–17; and Galen Strawson, ‘Against Narrativity’, Ratio 17 (2004), pp. 428–52. 104. Vickers, ‘Illness Narrative’; David Napier, Clyde Ancarno, Beverley Butler, Joseph Calabrese, Angel Chater, Helen Chatterjee, François Guesnet, Robert Horne, Stephen Jacyna, Sushrut Jadhav, Alison Macdonald, Ulrike Neuendorf, Aaron Parkhurst, Rodney Reynolds, Graham Scambler, Sonu Shamdasani, Sonia Zafer Smith, Jakob Stougaard-Nielsen, Linda Thomson, Nick Tyler, Anna-Maria Volkmann, Trinley Walker, Jessica Watson, Amanda C. de C. Williams, Chris Willott, James Wilson and Katherine Woolf, ‘Culture and Health’, Lancet 384 (2014), pp. 1607–39. 105. Gerald Prince, ‘Revisiting Narrativity’, in Walter Grüzweig and Andreas Solbach (eds), Transcending Boundaries: Narratology in Context (Tübingen: Gunter Narr, 1999), pp. 43–51. 106. Anna De Fina and Alexandra Georgakopoulou, Analyzing Narrative (Cambridge: Cambridge University Press, 2012), p. 1 (emphasis in the original).

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33 BROADMOOR PERFORMED: A THEATRICAL HOSPITAL Anna Harpin

Introduction roadmoor Hospital is a problem. Located on the edge of the village of Crowthorne, Berkshire, it is an enduring and intransigent edifice that bears witness to a knotted medical and human history. In the sediments of its 153-year-old frame lie wasted both the humanitarian psychiatric innovations and the cruel barbarities of a period of profound change in mental asylums. Both architecturally and culturally the site is, in some ways, marked: it is a melancholic monument to madness and its chequered past. While almost all other asylums in Britain are closed, Broadmoor Hospital remains. It is, of course, no longer an asylum in either form or purpose. Yet, as indicated above, it is one of the remaining relics of the asylum movement that is still in operation as a long-term facility for mentally distressed men, many of whom, though by no means all, have committed crimes.1 It is common, as Juliet Foster, Benjamin Reiss and others have noted, to observe asylums as remote ruins of archaic and frequently cruel histories.2 It is tempting, similarly, to conceive of Broadmoor as a historical patchwork site weathered by a Benjaminian storm that has piled ‘wreckage upon wreckage’ in the name of psychiatric progress.3 Indeed, as the chapter progresses, the tendency to frame Broadmoor in extreme terms will become clear, which, I suggest, points to the hospital’s peculiar status as a place of friction for public debates regarding madness, care, risk and responsibility. Moreover, the hospital invites us to consider broader social questions regarding freedom and humanity: how do we treat very vulnerable people, some of whom have committed terrible acts? What is care? What does it mean, practically and politically, to rehabilitate an individual into a social citizen? And, indeed, what is the meaning of citizenship in a context where one can be forcibly treated and denied the right to vote?4 Answers to these questions are fraught and unlikely to be resolved in this chapter. However, the challenge with Broadmoor, as with other asylums, is to understand them as neither simply Hell nor Elysium, neither snake pits nor idylls, neither disasters nor triumphs. Understanding the complexity of these places is vital in order to apprehend the recent history of madness better. This chapter seeks to get behind ‘The Wall’ and consider how arts practices within the hospital may illuminate some ideas about how we understand, treat and segregate madness.5

B

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Asylum voices are not silent. As Gail Hornstein’s extensive bibliography of firstperson accounts of madness attests, patients and survivors have been regularly writing back to power with regard to their ‘mad’ experiences throughout the nineteenth, twentieth and twenty-first centuries.6 The question remains, however, as to how far these voices have been properly heard. Nevertheless, for the purposes of this chapter, Hornstein’s resource raises two pertinent issues. Firstly, there is clearly evidence to suggest that patient narratives exist and thereby offer a counter-narrative to the dominant orthodoxies of psychiatry. Moreover, the act of retrieval and giving space to marginalised voices is an urgent and valid practice within the medical humanities and civil rights literature more broadly. However, this chapter seeks to propose another methodology for excavating the history of madness and Broadmoor. This chapter will examine the cultural ephemera of the hospital archives in order to consider what they reveal about the attitudes to, and treatments of, patients. Moreover, I will consider what performance as a mode of thinking illuminates about institutional life. In this way the chapter seeks to situate these established biographical approaches to the medical humanities critically alongside research into the materiality, labour and meaning of performance within medical settings. This is particularly important in the context of Broadmoor owing to its ‘infamous’ patients. Writing in 1976, the then Medical Superintendent of Broadmoor, Dr Patrick McGrath, noted ‘The population of this hospital is very much over-researched and over-questionnairred [sic], and I will be extremely reluctant to impose upon even a small number of the patients yet another questionnaire.’7 It is partly in Dr McGrath’s spirit that I move away from analysing patient records and towards the cultural ephemera of the hospital. This approach casts the light elsewhere than on their much-examined tales.8 Secondly, the framing of Hornstein’s bibliography as authored by ‘survivors’ gives us our clue as to how to receive the materials. Quite rightly, given the litany of abuses that scorch the history of mad folk, a dominant conceptualisation of such writings is that they should be understood as a form of protest literature. Indeed, Hornstein argues explicitly and elegantly for this in her work Agnes’ Jacket: A Psychologist’s Search for the Meaning of Madness.9 However, I wish to consider how far this mode of interpretation is challenged or agitated in the context of a doubly incarcerated space such as Broadmoor. And here we can also reflect on how performance, both as a practice and a reading strategy, might complicate some existing modes of thought in the medical humanities: how does performance help us to understand Broadmoor? What pressures are exerted upon arts practices in a total institution such as this? If arts form part of the fabric of rehabilitation, does this rob them of their resistive potential? Is art, in effect, part of the disciplinary strategy of the regime, and if so, might the ephemera help us to understand both the works themselves and their place of origin? Can asylum art ever be a form of protest if it is simultaneously a gesture of conformity aimed to ‘prove’ one’s sanity? This chapter will examine the theatre and performance practices that have taken place within the hospital, including visiting companies, staff performances, and the long-standing patient-led company, ‘The Broadhumoorists’. I will also glance towards

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the patient journal, The Broadmoor Chronicle, and other cultural activities such as fêtes, dances and annual shows to situate the theatre practice in its broader cultural context. I will argue that through an examination of these activities one can witness both a lively and expressive cultural life that reaches beyond the confined hospital space, and a coercive pantomime of citizenship and civility.

Out of Sight, Out of Mind Writing in 1854, John Bucknill described the criminal wing at Bethlem (Britain’s first psychiatric hospital) thus: It is not a modern prison for there is no corrective discipline; it is not a hospital for suitable treatment is impossible; it is not an asylum for the relief and protection of the unfortunate for it is one of the most gloomy abodes to be found in the metropolis. It is simply a receptacle; into which the waifs of criminal law are swept, out of sight and out of mind.10 Bucknill here hits at the heart of public debates that still dog places like Broadmoor: the tension between detention and treatment, whether treatment is even possible, the value of moral therapy, and the longevity of stay.11 Broadmoor is not, nor ever has been, a prison. It is a hospital established on the understanding that madness needs care not retribution, irrespective of index offence. Yet questions regarding punishment, culpability and responsibility endure, despite the interventions and developments in the intervening 153 years since its opening. Broadmoor was established in 1863 in part to redress the inadequacies of Bethlem’s criminal wing and to provide a place of asylum for profoundly distressed individuals. It was founded on humanitarian principles. In the handbook for attendants, staff are reminded that ‘Kindness and forbearance are first principles in the care and management of persons of unsound mind; few such persons are beyond their influence.’12 This intention, while not continuously or consistently realised – a number of rather severe superintendents had different notions, has largely been the guiding spirit of the hospital. Indeed, key reforming figures are prominent throughout Broadmoor’s history, including, amongst others, William Orange (1870–86), Stanley Hopwood (1938–52) and Patrick McGrath (1957–81). Archivist Mark Stevens gives us this description: ‘Orange’s Broadmoor was one in which arts, crafts and sports flourished. Patients were integrated as much as possible and social interaction encouraged.’13 Similarly, Hopwood supported the establishment of both The Broadhumoorists and The Broadmoor Chronicle, while McGrath was an outspoken defender of rehabilitation: Often forgotten in the clamor to shut down the old Victorian bins for their myriad failings, is the responsibility we bear to protect the mentally ill from their own vulnerability. For all its sins Broadmoor offers safe harbour to the lost and tormented psychotic soul; it is an asylum in the best sense of the word.14

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While not exonerating Broadmoor, it is worth reflecting upon how generous current public thinking (and money) is towards those deemed mentally ill. As Benjamin Reiss writes in his exemplary study of North American asylums: It is almost fantastical to imagine that the person in rags whom we may see today conducting conversations with imaginary entities in public spaces might, in a different era, have been attending tea parties, lecture series, daguerreotype workshops, theatrical performances . . . It is worth remembering that our society was capable of thinking broadly and creatively – if not critically enough – about its responsibility toward those whom it deemed incapable of managing their independence.15 While a US context is, of course, distinct, the resonances with (s)care in the community in the UK and its familiar scandals and headlines offer important parallels. It is perhaps worth turning back, then, to the cultural life of the hospital and notions of moral therapy to apprehend better the hopes, failures and lessons such practices might offer to contemporary discourses of madness.

‘One touch of nature makes the whole world kin’16 Asylums were designed as discrete social spaces replete with farms, workshops, sports fields, theatres, cinemas (latterly), chapels and so on. In the absence of pharmacological interventions (beyond sedatives) or other invasive physical ‘cures’, the mainstay of treatment in the second half of the nineteenth century and well into the early half of the twentieth century was moral therapy. The notion that rest, environment and appropriate activity could soothe and reorganise disordered minds was tenaciously held. Broadmoor was no exception to this model. Indeed, The Times newspaper reported in 1865 that ‘In all that relates to diet, lodging and every other comfort they [the Broadmoor patients] are treated with almost an excess of care.’17 Similarly, writing nearly a century later, Ralph Partridge observed that ‘One thing was clear; that recreation in one form or another was available every day of the week for every patient who wanted it.’18 In this way, Reiss’s now ‘fantastical’ image of hospital citizenship is manifest in Broadmoor’s archival remains. The historical materials are populated by an array of event programmes, invitation cards and activity schedules. A programme sheet for ‘Christmas Week 1965’, for example, details events including ward fish and chip suppers, staff versus patient football matches, play rehearsals, bingo and band practice.19 Again, this is not to suggest that Broadmoor was a nirvana; rather, it is to draw our attention to the enduring faith in creativity and activity (as well as physical space) as means to modify ‘faulty’ minds. Juliet Foster’s discussion of theatre in three asylums echoes this fact: ‘There is also a sense in which they [the plays] seem to try to establish a sense of normality.’20 Moreover, even in the 1990s, documentaries about Broadmoor acknowledge the lively cultural life of the asylum and its effects. Trevor Philips’s 1992 documentary, Inside Broadmoor, describes music and theatre (amongst other pursuits) as composite aspects of the ‘process of normalisation’ that was taking place therein.21 Similarly, in 1996, Hilary Benson’s Horizon: Patient or Prisoner conceives of maximum-security hospitals as places where patients are ‘learning to live’.22 One can

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perceive, then, albeit in new forms and terminology, vestiges of moral therapy: a belief that meaningful artistic activity can directly support psychological rehabilitation and care. Indeed, in a discussion of the use of electroconvulsive therapy (ECT) in the Hospital’s Annual Report from 1956 we hear that ‘The major therapeutic weapon remains the unremitting pressure from staff and fellow patients towards socialisation, activity, and conformity to acceptable standards.’23 One may wish to applaud such a principle readily. It is surely a positive practice to nurture artistic expression as a purposeful part of a holistic approach to care for distressed people. However, once art becomes programmatic and embedded within the regime of the total institution, is it then bereft of its essential autonomy? And what pressures does this exert on the practices of art therapies in such settings? If artistic expression becomes a means to ‘normalise’ and becomes a rehearsal of ‘acceptable’ citizenship, is it always-already nullified? What can be the value of art and creativity when conscripted within a broad set of disciplinary practices steered towards consensus reality and conformity? In her discussion of A. F. Browne’s ‘The Moral Treatment of the Insane’, Foster notes that ‘What is clear from Browne’s paper is how far theatre at the time [1860s] was linked to popular ideas of the “moral management” of madness.’24 It is perhaps unsurprising, then, that theatre had a role in hospital life from its inception. In their creation of a closed society, for both staff and patients, the architects of Broadmoor created a Central Hall that could receive guest lecturers, hold dances and mount performances. In the vision of a total community, theatre was understood as a necessary dynamic. This is striking in what it reveals about the values of the time with respect to what it means to have a full and humane life behind closed doors. It is hard to imagine such investments being made today within the dominant biomedical framework of care. Though now anachronistic and lumbering, these Victorian bins are, as Carla Yanni and others have pointed out, important monuments to a time when madness was a significant subject in public discourse.25 Without romanticising the asylum movement, one ought to pause over theatre’s role within the humanitarian spirit of the hospital. Theatre, like literature, is in many ways an act of empathy. At its best, in its temporary creation of other possibilities, it allows one to imagine other lives briefly and thereby ‘make the whole world kin’.26 As either spectator or actor, one is in communion with alternative realities in ways that can be politically and ethically urgent. Moreover, live performance is fretted with notions of risk, responsibility, collectivity and social communication in ways that are especially vital within the confines of a maximum-security environment. At other times, theatre can simply be a beautiful (or ugly) diversion, and at others still, somewhere between the two. In the 153 years of Broadmoor, theatre has occupied multiple positions. And, as Lisa Guenther discusses in her chapter with respect to the pseudo-theatrical staging of state execution as an act of medical care in North America, the performance of empathy within maximum-security environments often attains a curious and, at times, perverse value.27 It is impossible to do justice to the myriad uses of performance at Broadmoor, not only because of the plural and shifting nature of theatre practice at the site (to say nothing of the hospital as performative space), but also owing to the shapeshifting form of the hospital itself with respect to ideologies of care. For the purposes of this chapter, however, I will move

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chronologically through three major phases of theatrical activity at the hospital: from staff-focused shows, to patient-led comedy, to patient-focused tragedy.

‘The staff have commenced rehearsals for their next pantomime . . . but why rehearse?’28 In the nineteenth century there were regular performances and lectures by external companies and artists in Broadmoor’s Central Hall. These ranged from concerts to theatre shows, to photographic slide shows, to magic and other ‘variety’ acts. The late Tony Benn’s grandfather, J. Williams Benn, for example, drew caricatures of Londoners to a musical accompaniment (Figure 33.1), while Signor Bosco offered a magic show (Figure 33.2). Three things are apparent from these artefacts. Firstly, Broadmoor was a legitimate touring venue for diverse artists. Secondly, these were public events for people who live off-site, as well as for the staff. Thirdly, these were, in general, not performances for patients. The mention of a séance and the invitation that ‘Carriages may be ordered for Ten Minutes to Ten’ indicate freedoms and timing that were unavailable to the majority of Broadmoor’s inhabitants. Moreover, in the playbill marginalia, there are occasional comments that ‘the show will be performed earlier that afternoon for the patients.’29 In practice, then, the patients watch the dress rehearsal. Elsewhere in the archive, one witnesses the quiet, unremarkable hierarchies of the day. The Jubilee Sports Day details prizes for races: cash for male patients, tea and coffee for ‘married women’, no prize for the winner of the ‘nigger race’.30 Several playbills and programmes in the archives in the late nineteenth century refer to the ‘Dramatic Company of this Institution’. While the programmes indicate the mixture of staff and patients within these cultural activities, it is clear that this is, by and large, an off-stage role for the patients (Figure 33.3). Throughout the archival material a clear delineation is made between staff and patients in the ways in which their names are recorded, whether in the cricket listings or cast lists. Patient names are frequently anonymised or given as pseudonyms, and never have prefixes.31 Staff are all accorded the status of Mr, Miss, Dr and so on. It is clear, then, from the programmes that patients did not take on acting roles in productions in the period. At most they had a chorus role. Patients were, for much of the nineteenth century and beginning of the twentieth, spectators. Theatre contributed to the general therapeutic hum of the building but was generally not an activity in the sense of active participation in performance.32 Nevertheless, there was a curious exception to this general rule. One wonders at patients’ experience of watching (and for a handful performing in) ‘The Broad Moor Blacks’ minstrel entertainment.33 The programme features an image of two caricatured black faces and outlines the performance, which included twelve songs, and a duet and sketch by the ‘Broadmoor Awkward Squad’. It appears likely that the ‘Broadmoor Awkward Squad’ were a chorus comprised of patients, given the lack of prefixes for their names on the programme. What is most curious to consider, however, is how this cabaret of minstrelsy operated on an ideological level for the patients.34 This is necessarily a question of speculation but perhaps a worthy

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Figure 33.1 Bill for J. Williams Benn’s ‘Sketching Entertainment’. Photograph: Anna Harpin, reproduced by permission of the Berkshire Records Office/West London Mental Health NHS Trust.

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Figure 33.2 Programme for Signor Bosco’s magic show, 6 December 1881. Photograph: Anna Harpin, reproduced by permission of the Berkshire Records Office/West London Mental Health NHS Trust. one. Given psychiatrist’s fears of the corrupting influence of popular culture on vulnerable minds, it is perhaps surprising to encounter the bawdy presence of such a show in a criminal lunatic asylum. Reiss similarly charts the presence of minstrel shows in North American asylums at this time. By the latter stages of the nineteenth century the shows had been, to a degree, sanitised – and all the more so for hospital performances. However, there remained a notable degree of vulgarity that ostensibly conflicts with the disciplinary regime of the institution. Reiss writes: Their [the minstrels] supposed nonproductivity, lack of decorum, and inadequate control of bodily functions (including sexual ones) were the negative example against which the patients were supposed to measure themselves. The discipline surrounding the spectacle was in studied contrast to the antics on stage.35 In the apparently playful theatrical and emotional excess of minstrelsy one can perceive a paternalistic act of instruction for the patients. Staff adopt the masks of ‘degenerative’ outcasts and thereby invite the patients to position themselves against such spectacular shame. Of course, one cannot be certain that this was either the intention or how it was received. However, it is possible to claim that an unavoidable pantomime of power, difference and appropriate behaviour will not have been invisible to the doubly incarcerated and dispossessed inhabitants of Broadmoor. In this way, it

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Figure 33.3 Programme for John Dobbs, 7 June 1881. Photograph: Anna Harpin, reproduced by permission of the Berkshire Records Office/West London Mental Health NHS Trust. would seem that, in the first phase of Broadmoor’s cultural life, the ‘civilising’ role of the arts for patients was primarily as a consumer rather than as a maker. Under the stewardship of Dr Hopwood, however, this would change. The late 1930s and 1940s saw significant developments in the treatment of mental distress, including early experiments with ECT and lobotomy. For our purposes, however, another key development was the introduction of occupational therapy in asylums and hospitals from the 1940s. The arrival of this practice further cemented the relationship between activity and wellbeing, between doing and feeling. While for some this may evoke images of tedium and interminable basket weaving, it is worth lingering with the question of what the doing of theatre may have added to the experience of being a patient.

First Tragedy, then Farce In 1945 Medical Superintendent Hopwood established The Broadhumoorists, a theatrical troupe comprised of patients for the purposes of recreational therapy. The company performed annually for staff, patients and the public from 1945 to at least the mid-1990s.36 Each winter the company would rehearse, and each spring they would

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perform seventeen public shows and three for patients between March and May. The theatrical diet was, in the main, farces, light comedies and musicals, the large casts and buoyant tone presumably fitting the bill for what was deemed appropriate (for both patients and external audiences). Indeed, a letter from an amateur theatre company who wanted to perform at Broadmoor sought to reassure the superintendent that they knew ‘the value of the correct type of concert within these places – NO SEX etc’.37 It is clear from the production history that more serious and challenging materials were largely off-limits. This chimes with Foster’s account of Brookwood, Fulbourn and Bethlem hospitals’ theatre history. There, too, ‘Tragedy seems to have been off the menu.’38 It seems likely that, given the tragic circumstances under which one is likely to be admitted to Broadmoor, the hospital team were reluctant to allow patients to venture on to more emotionally volatile theatrical ground. A comment in The Broadmoor Chronicle in 1969 implies, however, that this was not always to the satisfaction of all involved in the company: ‘[As producer of The Broadhumoorists] My sole aim is to see the considerable talent that is in Broadmoor and to put on stage more serious plays than has heretofore been the case.’39 Two years later, the company produced Harold Pinter’s The Birthday Party so it seems that he, albeit temporarily, realised this goal.40 Overall, however, the production history tells a comedic tale. The dominance of comedy and farce reveals something of the institutional attitudes to both theatre and madness. These rehearsals and performances were institutionally sanctioned activities as part of a programmatic rehabilitative system. Indeed, Partridge notes the ‘rewards’ that The Broadhumoorists were given: ‘For those who have taken any part in the show there is a grand supper after the last night; and for the actual cast a special outside treat is arranged, such as a half-day excursion by charabanc to some place of interest.’41 Theatre practice was, at this point, primarily conceived as a pleasurable divergence with fringe therapeutic benefits owing to the social nature of the form and the acquisition of skill and responsibility involved in participation.42 There is little sense, at this stage, that theatre itself may be directly relevant to the detailed exploration of the patients’ psychosis or index offence. In this way, the role of theatre appears to have been both a hobby for the privileged patients involved and also part of the general rehearsal of normality enacted behind ‘The Wall’. Nested within the merry-go-round of light entertainment too, however, is an implicit sense that the patients could not be trusted with more difficult work. Two myths persist in this performance history: the mad are volatile; and theatre is dangerous for impressionable minds. The institutional aversion to risk is, on the one hand, understandable. However, on the other, it exposes the enduring paternalism of hospital life. Theatre is, then, twice confined within Broadmoor and its patients are playing by the rules. Here again one encounters the paradox of artistic practice at incarcerated sites. It is at once both salutary and humanising that theatre forms an active presence in the total institution, and yet the tightly defined limits of acceptable play (as well as the minority participation43) render the cultural life somewhat hollow and infantilised. The uproarious play of farce rings with a sham, carnivalesque note. Where, in the early theatrical life of the hospital, patients watched the on-stage mayhem and were invited to define themselves against such excess, now they are invited

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to inhabit the theatrical chaos in an ‘as if’ sham of wild play. In the giddy, apparent permissiveness of comedic theatre lies a disciplinary enactment of conformity. One is put in mind here of Slavoj Žižek’s critique of the role of humour in brutal regimes: In the good old days of Really Existing Socialism, a joke popular among dissidents was used to illustrate the futility of their protests. This sad joke reveals the predicament of the dissidents: they thought they were dealing serious blows to the party nomenklatura but all they were doing was slightly soiling the nomenklatura’s testicles, while the ruling elite carried on raping the people.44 The Broadmoor Chronicle features a regular jokes page, ‘The Lighter Side’, that playfully ribs the staff and patients alike: ‘We hear that the Deputy Superintendent is in favour of a Swimming Pool so that the Patients can go off the deep end whenever they wish.’45 While not equating either the context or the style of humour, there is a useful point of connection between Žižek’s assessment and Broadmoor’s comedic life in so far as in both examples there is a performance of rebellious freedom that is, in fact, suppurated with conformity and confinement. Indeed, another joke from the Lighter Side quips, ‘Over the Main Gate is the word ENTER. Has anyone ever seen the gate bearing the word EXIT?’ I do not wish to erase the enormous value of the work of The Broadhumoorists (or The Chronicle); rather I simply wish to illuminate what the production history reveals about the role of the institution in patients’ artistic expressions, attitudes towards the vulnerability of ‘mad’ minds, and the purpose and value of theatre in a place like Broadmoor. At this stage, theatre is primarily a playful and safe diversion for a select few based on very prescriptive rules of what is appropriate material for unsound minds.46 Again, The Chronicle mirrors the cosseted nature of theatre in so far as it is approved by the Medical Superintendent and subject to scrutiny. In the foreword to the first issue he writes, The object of the Magazine is to inform and amuse but not to hurt, let us, therefore, see that its contents are witty, humorous, clean, and snappy, and let us insist that they shall be quite free from any spiteful or unkind remarks.47 Gentility and humour became the necessary channels through which one could speak in a creative voice within the hospital. Theatre appears, then, to have been cast in a civilising role in Broadmoor’s (probably well-intentioned) paternalistic regime that sought to mould its inhabitants back into the acceptable shape of full citizens. In the doubled act of performance the patients rehearse a farce as part of a broader rehearsal of acceptable humanity. However, an inevitable gap remains, particularly given that the length of stay for many patients in Broadmoor’s history can run to decades not just years. Former patient Peter Thompson writes, ‘The authorities at Broadmoor had tried to prepare patients for life outside, providing regular tastes of social life’ but laments that these ‘never began to conquer the fear of doing similar things in society’.48 Similarly, Marjorie Wallace, informed by her research with ‘silent twins’ June and Jennifer Gibbons, describes:

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As the years went by and eleven winters washed into summers the relentless round of alcohol-free drinks, table tennis tournaments, bingo sessions and sneaked kisses grew less satisfying. . . . The daily routine, not unpleasant in itself, became stifling when repeated year in and year out.49 The repetition, therefore, not only underscores the unreality of the situation but also, moreover, exposes the values that were being inculcated therein. Through cultural activity patients were invited to engage with social scripts of normalcy. It is perhaps unsurprising, then, to find the recurrent use of theatrical metaphor in asylum memoirs. As Reiss describes: ‘To be cured was to go through an elaborate stage show, and sanity was revealed as the mastery of artifice.’50 I do not wish to suggest that occupational and recreational activities have no value and are purely oppressive, homogenising strategies. However, I do wish to consider if the ‘village atmosphere’ of Broadmoor’s cultural world restricted the possibilities of what was considered acceptable human behaviour.51 That is to say, in the imitative performance of civility that is evident from the Broadmoor archives lies a problematic corrosion of the legitimacy of alternative or non-normative behaviours, both past and present. Not only is one deposited into a circus of normalcy, but also one’s previous experiences (that led to detention in Broadmoor) are simultaneously whitewashed. The cultural ephemera, then, cumulatively reveal a regime of aspirational normality and an insistence on consensus reality in manners that are politically oppressive.

‘I discovered that actors are human . . . Quite a revelation’52 The Broadhumoorists, and indeed the staff theatre companies like ‘Broad and Moorish’, were still in operation in the 1980s and 1990s. However, a definite shift occurred around this time. There was a therapeutic turn towards dramatherapy coupled with a deepening understanding of the capacity of theatre practices to have an explicit role in understanding and caring for patients.53 Applied theatre companies, such as Geese Theatre, begin to run workshops in Broadmoor in the 1980s and patients were actively encouraged to use drama as a means to explore their index offence and experiences of madness. In this way recreational diversion and socialisation gave way to a more purposeful merging of creative and therapeutic agendas that dealt with patient histories. A particular case illustrates these developments acutely. Between 1989 and 1991 the Royal Shakespeare Company (RSC) performed three productions (Hamlet, Romeo and Juliet and King Lear) and ran workshops in the hospital. While this may appear to be in keeping with the long-standing tradition of visiting companies, it is notable that tragic works were performed and that, moreover, these were followed up with workshop activities. Murray Cox’s Shakespeare Comes to Broadmoor offers a thorough account of the process; however, I wish to explore two notions that are tacitly embedded within this project: risk and exceptionality. It is my contention that this set of activities marked a significant development in attitudes towards patients as well as a thoughtful engagement with questions of empathy and treatment.

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The twin duties of Broadmoor are care and protection. These are often pitted as rivals in the press when, in fact, the former is the safest route to the latter. Nevertheless, risk remains an issue that preoccupies the hospital and the public. Moreover, as Nikolas Rose notes, there is a significant increase in ‘risk thinking’ generally in psychiatry from the 1990s onwards.54 Similarly, Simon Cross notes a new development in media cultures in the post-asylum period, which began to reframe the mad as predators, as opposed to victims (despite there being no evidence that murder by individuals involved in the mental health services has increased).55 Risk is something that the mental health services are pressurised into attempting to abolish despite the invidious nature of that task. Contrarily, theatre is, by nature, a risky business. Discourses of risk circulate in rehearsal rooms and diverse critical writings on practice.56 Risk is a necessary, even desirable, performance dynamic. The embracing of risk that one witnesses in the RSC work at Broadmoor is, I suggest, vital to note in so far as it conferred autonomy and humanity to otherwise profoundly restricted individuals’ lives. In a period of ‘risk thinking’ in forensic psychiatry (which in part leads to the reality that nearly a third of patients at Broadmoor at this time should not be there), the performance and workshop exploration of tragedy is a particularly bold act.57 One value of the productions was their prestige: the status of the RSC indicated that the patients mattered (to more than just staff and therapists). One patient described it thus: ‘Therapeutically it was invaluable. I found it uplifting that a group of such talented and respected actors and actresses, in their spare time, could make the effort to perform for us, a group of despised social outcasts.’58 More importantly, however, patients were presumed capable of managing emotionally complex material in ways that are not evidenced in the prior 110 years of light entertainment: ‘Having killed and abused ourselves, we are able to understand the madness and violence and the many ranges of emotions in Shakespeare’s tragedies because it is close to our heart.’59 Moreover, there is ample evidence to suggest that this, for some, shed new light on their own histories: ‘When you picked up the skull it really got to me . . . it never crossed my mind until now that there is a corpse somewhere of the person I killed. I have never thought about the corpse before.’60 One wonders here how far the lack of programmatic therapeutic agenda and ‘outsiderness’ of the company helped liberate the modes of patient engagement by creating an emotional space apart from the totality of the hospital regime. Just under a quarter of the patient population attended the performances and workshops and no patient who applied to attend was rejected.61 In this way one can begin to perceive a move away from a paternalistic approach to theatre in Broadmoor as a safe, comic diversion and toward a sense that it may contribute productively to care precisely through its ‘risky’ emotions. If the first two phases of the hospital’s theatre history are dominated by farce and light entertainment as a mode of civil rehabilitation, then the turn towards tragedy and dramatherapy implies a new sense of the value of risk and autonomy in the care of patients, alongside a wider professionalisation of arts as remedy. Where the theatre history up to this point appears to flatten out alterity and emotional complexity, here we witness a decisive turn towards difficulty. The performative

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exploration of tragedy is significant in two ways for our discussion. Firstly, it confers responsibility for their emotions back to the patients in ways that begin to counter the paternalistic structures heretofore in evidence. Secondly, it relocates the patients’ experience from being beyond the realm of human experience to back within it. This, I argue, is an empathetic move that marks a humanising gesture within the value system of the hospital. Tragedy, by nature, claims that this death is exceptional. It explores a catastrophic set of events and accords them torrid beauty. Moreover, the scale and nature of the deeds enacted on stage are, for most audiences, outside their sphere of experience. Broadmoor turns these conventions on their heads. A sequence of terrible acts that changes things irreparably is not beyond the frame of reference for many of the hospital’s inhabitants. One patient described how Hamlet ‘seems to express every fear and pleasure that I had experienced when I committed my crime’.62 The performance contract, then, between actor and audience in tragedy is altered if what should be exceptional is, in fact, common. If tragedy is robbed of its exceptionality and instead conferred a paradoxical commonality, then this relocates the patients’ index offences back within the continuum of human experiences. Where farce appears to corrode the legitimacy of non-normative experiences, tragedy asks us to look again at human complexity. This is not to suggest it banalises or endorses violence for the patients; rather it is to suggest that it disrupts the narrative of monsters or ‘despised outsiders’ that haunt perceptions of Broadmoor. Moreover, the performance invites us to consider not only what a character has done but also how this catastrophe came to pass. In this way tragedy affords a challenging but empathetic engagement with personal histories. Where once Broadmoor engaged with theatre, in part, as a means of civilising patients to an acceptable normality, here one can witness a step towards an empathetic embrace of alternative experiences. Rather than rehabilitating individuals back to a consensus reality, there appears to be a move towards helping individuals to find a way to be more peacefully in theirs.

The Rest is Silence The Broadhumoorists are disbanded. The Broadmoor Chronicle is defunct. The fêtes, annual shows and sports days long since stopped. The vast hospital that once housed over 800 patients is now home to only around 200 men. The hospital-wide ‘village’ community gave way to much smaller units with more individually tailored care and pharmacological interventions. The imitative internal society of dances and theatre productions thus became an anachronism as the hospital steadily moved from being a long-stay asylum to a (relatively) short-stay place for treatment. In this way the lively (and problematic) cultural jangle of the asylum is now silent. While one ought not to soften the cruel edges and oppressive flaws of this regime, it is worth pausing, as Reiss suggests, over how we conceive of care for profoundly vulnerable individuals today and considering the values embedded in past and present practices. Moreover, how

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might the critical medical humanities contribute to such questions of madness, care and humanity? The preceding pages have tried to examine what the changing role of theatre practice at Broadmoor might reveal about shifting institutional attitudes to madness in the course of its 153-year history. This is inevitably a partial glimpse at this vast subject; however, it is possible to discern three primary phases of theatre practice as patients move through being cast as spectators, then players, then creative participants in their own histories. In this way theatre appears to move from being a disciplinary and entertaining event, to a rehabilitative activity, to finally a therapeutic encounter and process. There is a valuable horizontal narrative here in so far as there is a palpable development in institutional attitudes to patients’ autonomy, humanity and capacity. There is also a salutary broadening of the hospital’s understanding of what theatre as a practice and as a mode of thought (therapeutic or otherwise) can do. However, what shimmers throughout this history is a sense of how far the core terms of the discussion are mutually contingent and unstable. The meanings and values of theatre at Broadmoor form a precarious constellation that looms in and out of view in tandem with our critical understandings of care, therapy, personhood and madness, which, equally, sharpen and blunt over time. Indeed, this history precisely exposes the conditions of legibility by which theatre and madness and care are recognised as such. One challenge, perhaps, for the critical medical humanities, is to synthesise surety and precarity in discourse; the collision between history and performance may offer one such opportunity in so far as it warps time signatures of knowledge. If nothing else, theatre reminds us that, to echo Daniel Kitson, it’s always right now, until it’s later.63 In this way, the braiding of context and contingency enfolds what was, what is and what will be in vibrant form. If this chapter has reflected upon some of the values that appear embedded in the theatrical ephemera, it is also timely to reflect simultaneously on what the material remains of our current biologically minded and pharmacologically driven approach might reveal about how we value madness and mad folk, and, moreover, to ask: who cares?

Further Reading Clark Baim, The Geese Theatre Handbook: Drama with Offenders and People at Risk (Hook: Waterside, 2002). Murray Cox (ed.), Shakespeare Comes to Broadmoor: ‘The Actors are Come Hither’: The Performance of Tragedy in a Secure Psychiatric Hospital (London: Jessica Kingsley, 1992). Harvey Gordon, Broadmoor (London: Psychology News, 2012). Anna Harpin and Juliet Foster (eds), Performance, Madness, and Psychiatry: Isolated Acts (Basingstoke: Palgrave, 2014). Ralph Partridge, Broadmoor: A History of Criminal Lunacy and its Problems (London: Chatto & Windus, 1953). Benjamin Reiss, Theaters of Madness: Insane Asylums and Nineteenth-Century American Culture (Chicago: Chicago University Press, 2009).

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Notes 1. I refer here to ‘men’ as, although women were the first patients at Broadmoor, the women’s services ceased in 2007. The majority of Broadmoor’s patients have come to the hospital via the prisons, courts or other secure units. However, not all have committed a crime. Moreover, their crime may not necessarily be connected to their illness. See (accessed 17 March 2015). 2. See Juliet Foster, ‘Performance in Bethlem, Fulbourn, and Brookwood: A Social Psychological and Social Historical Examination’, in Anna Harpin and Juliet Foster (eds), Performance, Madness, and Psychiatry: Isolated Acts (Basingstoke: Palgrave, 2014); and Benjamin Reiss, Theaters of Madness: Insane Asylums and Nineteenth-Century American Culture (Chicago: Chicago University Press, 2008). 3. Walter Benjamin, Illuminations, trans. Harry Zorn (London: Pimlico, 1999), p. 249. Benjamin here offers plural conceptions of history and proposes, in response to Paul Klee’s painting, Angelus Novus, that history might be understood as a pile of accumulating wreckages created during a storm we call ‘progress’. 4. Under the Mental Health Act (2007) one can be forcibly admitted to hospital and treated without consent (under certain sections of the act). If you are an informal patient (that is to say, not detained under the Mental Health Act), you retain your right to vote. If you are a formal patient, you may vote as long as you have not committed a crime or been sent to hospital via a criminal court. 5. According to Ralph Partridge, ‘The Wall’ was common slang within the institution in the 1950s for the hospital itself. See Ralph Partridge, Broadmoor: A History of Criminal Lunacy and its Problems (London: Chatto & Windus, 1953). 6. See (accessed 18 March 2015). 7. Letter from Dr Patrick McGrath to Miss Sylvia Lindsay, dated 23 September 1976, in response to her request to give questionnaires to patients who had participated in her Music in Hospitals activities. Accessed in Berkshire Records Office (BRO). 8. Examples of auto/biographical works include Linda Brogan and Polly Teale, Speechless (London: Nick Hern Books, 2010); Janet Cresswell, Ox-Bow (London: Chipmunkapublishing, 2005) and her unpublished play, One-Sided Wall, written while she was in Broadmoor and performed at the Bush Theatre in 1989; Steve Hennessy, Lullabies of Broadmoor: A Broadmoor Quartet (London: Oberon, 2011); Alan Reeve, Notes from a Waiting Room (London: Gay Men’s Press, 1983); Mark Stevens, Broadmoor Revealed: Victorian Crime and the Lunatic Asylum (Barnsley: Pen & Sword, 2013); Peter Thompson, Bound for Broadmoor (London: Hodder & Stoughton, 1972) and Back from Broadmoor (London: Mowbray, 1974); Richard Tromans, Richard Dadd: The Artist and the Asylum (London: Tate Publishing, 2011); Marjorie Wallace, The Silent Twins (London: Vintage, 1998); Stephen Penny Warmark, Guilty but Insane: A Broadmoor Autobiography (London: Chapman & Hall, 1939); Simon Winchester, The Surgeon of Crowthorne: A Tale of Murder, Madness and the Oxford English Dictionary (London: Penguin Books, 1999); Olwyn Wymark, Find Me (London: Samuel French, 1980); and Winifred Young, Obsessive Poisoner: The Strange Story of Graham Young (London: Hale, 1973). 9. Gail Hornstein, Agnes’ Jacket: A Psychologist’s Search for the Meaning of Madness (New York: Rodale, 2009).

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10. John Bucknill, Unsoundness of Mind in Relation to Criminal Acts (London: Samuel Highley, 1854), original emphasis. 11. Lengths of stay in Broadmoor have steadily declined since the latter half of the twentieth century. However, even today, an average stay is 6 years. 12. Quotation from ‘Attendants’ Instruction Manual’ taken from Stevens, Broadmoor Revealed, p. 21. 13. Stevens, Broadmoor Revealed, p. 23. 14. Patrick McGrath, ‘Foreword’, in Gordon Harvey, Broadmoor (London: Psychology News Press, 2012), p. xviii 15. Reiss, Theaters of Madness, p. 197. 16. William Shakespeare, ‘Troilus and Cressida’, in The Norton Shakespeare, ed. Stephen Greenblatt, Walter Cohen, Jean E. Howard and Katharine Eisaman Maus (London: W.W. Norton & Company, 1997), III, iii, 169, p. 1877. 17. ‘The Broadmoor Criminal Lunatic Asylym [sic]’, The Times, reproduced (without author) in the British Medical Journal 213 (1865), pp. 96–7. 18. Partridge, Broadmoor, p. 187. 19. See BRO archive, document number D/H14/G2/1/2/8. The hospital will not allow any archive materials dating from 1939 and after to be published. 20. Foster, ‘Performance in Bethlem, Fulbourn, and Brookwood’, p. 51. 21. Inside Broadmoor, television, Trevor Philips. London: London Weekend Television and Figaro Films, 1992. 22. Horizon: Prisoner or Patient, television, Hilary Benson. London: BBC, 1996. 23. Broadmoor Hospital Annual Report 1956 [BRO]. 24. Foster, ‘Performance in Bethlem, Fulbourn, and Brookwood’, p. 46. 25. See Carla Yanni, The Architecture of Madness: Insane Asylums in the United States (Minneapolis: University of Minnesota Press, 2007). 26. Shakespeare, Troilus and Cressida’, III, iii, 169, p. 1877. 27. Lisa Guenther, ‘On Pain of Death: The ‘Grotesque Sovereignty’ of the US Death Penalty’, in this volume, pp. 395–410. 28. Anonymous, ‘The Lighter Side’, in The Broadmoor Chronicle 2 (1944) [BRO]. 29. The hospital would not grant permission to publish such marginalia. See BRO record D/ H14/G2/1/1/23 for an example of this. 30. See Jubilee Sports Day Programme, BRO, record number D/H14/92/1/1/21. 31. In the patient journal, The Broadmoor Chronicle, names are similarly either initials or pseudonyms such as ‘Al Catraz’. However, this may in fact have been a liberating choice for contributors to be able to write with a modicum more freedom. 32. The evidence points towards a heavily staff-dominated performance culture. However, it is not implausible that patients were involved in backstage roles and sometimes did play more minor parts in the large shows. There may also have been localised theatre activities within the patient blocks themselves that I have yet to uncover. 33. The hospital refused permission to publish this playbill, even a cropped version that removed any names. This is unusual, given that it dates from 1886 and so is not within living memory. However, no explanation was offered. 34. Minstrel shows were a nineteenth-century American theatrical form that caricatured slaves. Initially, white men put on black make-up and did comedic and musical acts impersonating slaves, but later, African American troupes emerged and popularised the genre. 35. Reiss, Theaters of Madness, pp. 53–4.

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36. Owing to the restriction of access to records, it is difficult to establish precisely when the company disbanded, but performances certainly are still in evidence in the 1990s. 37. Letter from Ernest Stuart Bucket to Patrick McGrath, dated 5 March 1966 [BRO]; original emphasis. The archives reveal a wealth of letters by theatre companies throughout the twentieth century asking to perform light entertainment at Broadmoor. 38. Foster, ‘Performance in Bethlem, Fulbourn, and Brookwood’, p. 48. 39. The Broadmoor Chronicle 26.298 (1969) [BRO]. 40. Interestingly, and uniquely in the archive, The Broadhumoorists’ programme for The Birthday Party offers a very detailed plot synopsis. It is not clear whether this was to help with audience comprehension or to warn of difficult themes, or if it was just a quirk of the current producer. In any case, the rapid return to John Clements and Noël Coward suggests that the bold departure in style was short-lived. 41. Partridge, Broadmoor, p. 128. 42. A questionnaire completed by McGrath about a ‘Music in Hospitals’ programme reports that he thought that music had ‘some’ therapeutic value, ‘some’ educational value, ‘great’ socialising value and ‘good’ entertainment value. We can surmise from this that the general attitude to the creative arts was valued but not expressly at the service of an explicit therapeutic agenda. 43. Only ‘parole’ patients would have been allowed to engage in The Broadhumoorists’ rehearsals and productions. Moreover, most performances were to public audiences, as opposed to other patients. For example, in June 1991, The Broadmoor Newsletter reports that that year’s show was seen by ‘well over 1000 members of the public and by 75 patients’ [BRO]. In the 1950s the proportions are higher (upwards of 4000 public guests per season) but the relative public/patient proportions remain similar. 44. Slavoj Žižek, First as Tragedy, Then as Farce (London: Verso, 2009), pp. 6–7. 45. The Broadmoor Chronicle 1 (1944) [BRO]. 46. Numerous letters in the archive from visiting companies send in scripts and plot summaries for the Medical Superintendent to approve. In this way he acts almost in the role of Lord Chamberlain. There is little reason to suspect that The Broadhumoorists’ plays were not subject to similar scrutiny. 47. Dr John Hopwood, ‘Foreword’, The Broadmoor Chronicle 1 (1944). 48. Thompson, Back from Broadmoor, p. 3. 49. Marjorie Wallace, The Silent Twins (London: Vintage, 1998), pp. 260 and 261. 50. Reiss, Theaters of Madness, p. 14. 51. This ‘village’ description is a recurrent feature in the books about Broadmoor by both patients and historians of the institution. 52. Anonymous patient feedback form, quoted in Murray Cox (ed.), Shakespeare Comes To Broadmoor: The Actors Are Come Hither: The Performance of Tragedy in a Secure Psychiatric Hospital (London: Jessica Kingsley, 1992), p. 142. 53. Dramatherapy first developed as a practice in the 1920s but significantly expands as a practice from the late 1970s across the UK. See Sue Jennings, Dramatherapy: Theory and Practice (Abingdon: Routledge, 1987). 54. Nikolas Rose, ‘Governing Risky Individuals: The Role of Psychiatry in New Regimes of Control’, Psychiatry, Psychology, and Law 5.2 (1998), pp. 177–95. 55. For a discussion of Rose and risk, please see Simon Cross, Mediating Madness: Mental Distress and Cultural Representation (Basingstoke: Palgrave, 2010), pp. 14–19.

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56. See, for example, Sara Jane Bailes, Performance Theatre and the Poetics of Failure (Abingdon: Routledge, 2010); Christian Billing, ‘Rehearsing Shakespeare: Embodiment, Collaboration, Risk, and Play’, Shakespeare Bulletin 30.4 (2012), pp. 383–410; Dror Harari, ‘Risk in Performance: Facing the Future’, Theatre Research International 34.2 (2009), pp. 173–82; and Nicholas Ridout, Stage Fright, Animals, and Other Theatrical Problems (Cambridge: Cambridge University Press, 2006). 57. In 1992 Alan Franey (then General Manager of Broadmoor) said that between 80 and 150 out of 500 Broadmoor patients do not need maximum-security care. See Inside Broadmoor (1992). William Bingley (Chief Executive Officer of the Mental Health Act Commission 1990-5) echoes this in 1998, stating that between 30% and 50% of patients in high-security hospitals should not be there. See Panorama: Out of Sight, Out of Mind, television, Niall Dickson. London, BBC, 23 March 1998. 58. Anonymous in Cox, Shakespeare Comes to Broadmoor, p. 141. 59. Anonymous in ibid., p. 140. 60. Anonymous in ibid., pp. 148–9. 61. Ibid., p. 115. 62. Anonymous in ibid., p. 135. 63. This is the title of Kitson’s 2010 play.

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34 ON (NOT) CARING: TRACING THE MEANINGS OF CARE IN THE IMAGINATIVE LITERATURE OF THE ‘ALZHEIMER’S EPIDEMIC’ Lucy Burke

Introduction he immediate context of this paper is the so-called ‘crisis in social care’ that finds its most prolific and unsettling expression in news reports about the verbal, emotional and physical abuse of elderly people with dementia in care homes. In April 2014, BBC One’s Panorama reported on the abuse of residents at the Old Deanery care home in Essex and Oban House in Croydon.1 In June 2014, one care worker was jailed and two others were given suspended sentences and community service for the ill treatment of women with dementia at the Granary Care Home near Bristol.2 In the following September, a care worker in Manchester was charged with assault on a resident at the Manorhey Care Centre in Urmston, and later that month on 26 September, Agneszkia Sztokmanska, a former senior care worker at Milford Manor Care Home in Salisbury, was found guilty on five counts of the ill-treatment of residents with dementia under Section 44 of the Mental Capacity Act 2005.3 Reports from the US paint a similar picture. The National Center on Elder Abuse (NCEA) estimates the incidence and prevalence of the abuse of older people with dementia across all settings (both in residential care and in the community) as nearing 50%.4 With specific reference to abuse in residential and nursing homes, the NCEA cites K. Broyles’s study in the year 2000 based upon interviews with 2,000 nursing home residents, in which 44% said they had been abused and 95% said they had been neglected or seen another resident neglected.5 When interviewed following Agneszkia Sztokmanska’s conviction and sentencing, her employer, Matthew Airie, responded by describing her as a ‘one-off’ and a ‘rogue member of staff’.6 The notion of the ‘rogue’ employee is typical of the rhetoric that has emerged to account for these multiple and growing instances of abuse. It is a designation which attributes this kind of violence to the failings of particular morally aberrant individuals. However, without diminishing the significance of these acts of violence nor the responsibility and wrongdoing of their perpetrators, the endeavour to present this kind of abuse as the product solely of ‘rogue’ members of staff is not sufficient. It does not explain the persistence of abuse in residential care settings nor the similarities

T

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between these reported cases; the nature of the violence and even the language of the abusers is repeated over and over again. The connection between care and abuse is sufficiently embedded in both the public imagination and the legal apparatus to attract advertising revenue on Google from law firms who invite worried relatives to make care home abuse claims on a ‘no win, no fee’ basis.7 This correlation also gives rise to a position statement from the Alzheimer’s Society that details the various ways in which people with dementia are mistreated and abused both within and without the family.8 The statistical evidence provided by the latter indicates that 70% of people would be ‘scared of moving into a care home’ and 53% feared for the safety of a family member in this position. An online advertisement for the consumer organisation Which asks people to report care home abuse under the URL www.which.co.uk/unsatisfactorycare, as if assessing abuse ratings is a facet of consumer choice. As these examples suggest, there is an expectation of abuse here; far from representing the kind of remote possibility suggested by the rhetoric of the ‘rogue’ employee, the fear of abuse has become the rule rather than the exception. In this sense, I want to propose that abuse in residential care functions in much the same way that Slavoj Žižek has described sexual abuse in the Catholic Church: it is an ‘articulated counter culture’ within the current care system, not the exception but a product of ‘its very institutional symbolic organisation’.9 Indeed, proposed strategies to mitigate the ever-present threat and possibility of abuse are wholly continuous with the very problem they seek to address. The installing of CCTV or hidden cameras in residents’ bedrooms both assumes that abuse will occur and re-inscribes the personal and legal ‘vulnerability’ of residents and the asymmetrical power relationship between carers and the ‘cared for’. Even if we believe that the camera operates as a deterrent, this very idea presupposes an intrinsic violence to be thwarted or just waiting to be revealed. We can identify a similar correlation between caring, dementia and abuse in a range of novels and life narratives written in the wake of the current ‘Alzheimer’s epidemic’. Alice Sebold’s novel, The Almost Moon (2008) is paradigmatic of this ideological constellation, fusing care and violence together in the narration of the history of a family finally decimated by the pressures of caring for a parent with dementia. The novel opens with the stark revelation that the narrator, Helen Knightly, has murdered her mother, an act that she justifies in relation to the capacity of dementia to lay bare the essence of the person: When all is said and done, killing my mother came easily. Dementia, as it descends, has a way of revealing the core of the person affected by it. My mother’s core was rotten like the brackish water at the bottom of a weeks-old vase of flowers.10 Knightly’s narrative is fetishistically preoccupied with the effects of dementia upon her mother’s bodily functions. It is the smell of her voided bowels, ‘the unmistakable odor of shit’ (p. 7) and the necessity to clean her up, that precede Helen’s decision to smother her. There is a correlation here between the vulnerability of her mother and Helen’s impulse to harm her. This is something we also see in Helen’s detailed descriptions of her handling of the body. Her endeavour to wash her mother’s corpse is represented as

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a kind of sexual transgression: ‘I peeled down her old fashioned panties . . . In order to remove her underpants, I ripped them open, and her body jiggled just a bit . . . And there it was the hole that had given birth to me’ (pp. 43–4). This description transforms the act of washing her mother’s body into a form of sexual violation and one with which we as readers are rendered somehow complicit. There is something very similar at work in Annie Ernaux’s I Remain in Darkness (1997), in which she associates the public exposure of her mother’s ‘thighs, the white vagina, a few stretchmarks’ in the emergency room of the hospital to which she has been rushed with her memory of a dying cat urinating on her pillow and her own blood loss during an earlier abortion.11 Likewise, Julie Hilden’s The Bad Daughter: Betrayal and Confession (1998), a coruscating memoir about her response to her mother’s dementia, is characterised by a series of descriptions that encode a visceral repulsion at the corporeal effects of her mother’s decline, ‘fear and revulsion at what the body is and can become’:12 ‘her teeth were mossy, yellow and rotting . . . The flesh on her face was baggy, crinkled. It caved in on itself like the skin of a rotten apple’ (p. 128). There seems to be a connection in all three of these texts between the vulnerability of the women with dementia at the centre of their narratives and the excess of physical and symbolic violence that these descriptions express, as if it is precisely the need to be cared for, and the specific effects of dementia that prompt and justify the carer’s abuse. On a wider level, too, one wonders whether any other condition but dementia could give rise to such forensic descriptions of bodily decline, as if dementia as a condition somehow gives one permission to describe intimate care in a manner that is not seen to be appropriate or necessary in the representation of other ways of dying. In Sebold’s novel, Helen Knightly’s murderous response to the pressures of caring for her mother serves as the catalyst for an examination of her personal history, the meaning of family and the impact of these relationships upon Helen’s identity and capacity to realise her aspirations. At the manifest level of the text, the first-person narrative voice inscribes a sense of perspectivalism that seems entirely continuous with the unfolding of a set of narratives that explore the singularity and peculiarities of her family’s history. However, what I want to think about here is the place of the kind of descriptions of dementia I have identified in novels such as The Almost Moon and memoirs such as Ernaux’s and Hilden’s in relation to the wider cultural constellation of care and violence with which I began. This is an endeavour to read the imaginative literature and life-writing of dementia symptomatically in order to begin to understand and deconstruct the relationship between care, violence and dementia in relation to broader structural and ideological coordinates.

Dark Matter Making sense of the historical emergence of this correlation between two apparently oppositional concepts, care and abuse, and their articulation in relation to dementia demands that we identify the relationships between three forms of violence identified

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by Žižek: firstly, the ‘directly visible’ ‘subjective’ violence performed by a ‘clearly identifiable agent’; secondly, the symbolic violence encoded in language; and finally, the systemic violence that provides the grounds for these manifestations.13 The difficulty as Žižek indicates lies in foregrounding what is, necessarily, ‘invisible’. ‘Systemic violence’, he notes is: something like the notorious ‘dark matter’ of physics, the counterpart to an all-toovisible subjective violence. It may be invisible, but it has to be taken into account if one is to make sense of what otherwise seem to be irrational explosions of subjective violence.14 Žižek’s formulation is a reminder of the tendency of dominant ideological formations to efface and naturalise their own contours. The mediation of representations of subjective violence thus substitutes a sense of moral outrage or sentimental concern arising from the particular case at hand for an analysis of the political and economic determinants that underpin it. One of the characteristics of contemporary discourse around dementia and dementia care is the tendency to express their experiential effects in fundamentally personalised terms as if the meaning of an Alzheimer’s diagnosis for the individual or the emotional difficulties that attend the provision and experience of care and caring are essentially private, subjective experiences that operate independently of wider structural coordinates. The ideological effects of this are apparent in the evocation of acute suffering with which the UK Prime Minister David Cameron opened his ‘Dementia Challenge’, launched in March 2012. Describing dementia as the ‘one of the most important issues we face as a society’, the foreword to the policy document frames the problem of dementia from the perspective of a personal empathy for the individual’s experience of living with the condition.15 ‘Imagine’, he notes, ‘feeling confused and afraid because close friends and relatives seem like strangers; being unable to leave the house alone because you might not be able to find your way back; or seeing the fear in your loved one’s face, as they struggle to make sense of familiar surroundings’.16 Yet having oriented his endeavour to tackle the ‘challenge’ presented by dementia in the realm of affect and psychological suffering, Cameron’s subsequent manœuvre in speeches at the G8 Dementia Summit (11 December 2013) and the Global Dementia Legacy Event (19 June 2014) has been to present the solution to this problem as one of investment in pharmaceutical research.17 Via this sleight of hand, the incursion of the market into dementia research is presented as the solution to the subjective pain of personal experience. What is placed in parenthesis in this equation is the impact of the systematic decimation of social care budgets as part of the welfare cuts advocated as an essential facet of the ‘austerity agenda’. One needs only to imagine the absurdity of the scenario in which someone with dementia in need of additional support to wash, cook or clean declares, ‘If only more money were directed towards Pfizer then the fifteen minutes of care I am allocated would no longer be a problem and my suffering would be over’ to identify all that remains unsaid and unacknowledged in Cameron’s description and diagnosis of the problem. The point here is that despite the appearance of care and empathy on a subjective level, Cameron’s

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recourse to the market as the solution to this ‘crisis’ implicitly entails the undermining of a collective or societal framework with which to support people with dementia and those that provide their care. Whilst the Dementia Challenge strategy document details funding opportunities and a range of dementia initiatives, the notion that the lives of those with dementia and the work of their carers should be supported is brutally undercut by the previous Conservative/Liberal Democrat coalition and current Conservative government’s onslaught on welfare spending in the name of ‘hardworking tax payers’. The effects of the latter objective mean that precisely those individuals and families whose emotional needs are apparently paramount are actually the subject of a swathe of cuts to local government funding and social care budgets.18 It is possible to view this as a failure of ‘joined-up thinking’, or alternatively, as I have argued elsewhere, as an example of the ways in which the apparently incalcitrant ‘problem’ of dementia is deployed to serve particular ideological ends. The evocation of an epidemic of Alzheimer’s that threatens to lay waste to an ageing population is used, then, not only to support the further marketisation of health and social care but also to justify ‘austerity’ as the only rational response to the social and economic effects of the demographic changes we face.19 However, the shift in the meaning of care that I am identifying here has more complex determinants than simply the elisions or silences in recent government initiatives such as the Dementia Challenge. To begin to understand how care has become semantically yoked to the concept of abuse requires a historical analysis of its changing significations and concomitant transformations in the meaning of related concepts such as ‘family’, ‘responsibility’, ‘dependency’ and even love itself. The question I want to explore here is why care has become such an ideologically over-determined concept and why the ‘problem’ or challenge of dementia is so firmly at its centre. My aim in what follows is to map a set of coordinates in relation to which we can begin to address this question and to consider the ways in which a symptomatic reading of the imaginative literature of the age of Alzheimer’s enables us to identify the relationship between subjectively experienced violence (in its myriad expressions) and its systemic underpinnings.

(Not) Caring: A Short History of the Entanglement of Care and Violence 1. Mental suffering, sorrow, grief, trouble. Obs. 2. Burdened state of mind arising from fear, doubt, or concern about anything; solicitude, anxiety, mental perturbation; also in pl. anxieties, solicitudes. †withouten care: without doubt. †to be in care: to be troubled, anxious, concerned. 3. a. Serious or grave mental attention; the charging of the mind with anything; concern; heed, heedfulness, attention, regard; caution, pains. 4. b. Const. of (arch.), for, and inf. Here, and in 3c, the sense may pass, esp. in negative construction, to regard arising from desire or estimation, liking, inclination to or for.

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5. c. to have a care, †keep a care, take care. 6. a. Charge; oversight with a view to protection, preservation, or guidance. 7. b. Hence to have the care of , etc. to take care of : to look after (see to look after – 6 at look v. Phrasal verbs 2); to deal with, provide for, dispose of.20 According to the wisdom of the Oxford English Dictionary (OED), the first three of the definitions of care cited above emerge around the tenth century ce whilst the later definitions (4–7) have their provenance in sixteenth-century texts. We can see that the earliest meanings of care refer to mental suffering and the later ones to caring for another. As this suggests, the term gradually becomes one to which prepositions are attached; we care for someone, or take care of them. We can see here the accretion of meanings that transform the concept of care from something primarily inward-looking to a signifier that encompasses a kind of ‘Janus-faced’ or dialogical relation between self and other. Care signifies the ‘mental suffering’ of the one who cares and reaches out towards the object of care, the one for whom the solicitude of the carer is directed. Solicitude for another involves suffering; to care for the pain of another is to experience pain in some transposed form – as worry, anxiety or suffering ‘for’. Care, in this sense, signifies in an intersubjective domain, blurring the boundary between self and other. It speaks to our connectedness and to our interdependency. However, as the OED indicates, in the early 1930s care takes on a new set of meanings as a ‘legal formula . . . used of a destitute or dangerously circumstanced child who is judged fit for official guardianship’.21 This starts to link the concept of care to the notion of protection (‘to look after’) and to the right of the state to remove a child from its family. This new meaning begins to tie the concept of care to a range of state interventions into the lives of its citizens. From the early twentieth century, the concept of care becomes inextricably linked to the notion not only that the state has an obligation to intervene within the health and wellbeing of its populace but also that care is something that is delivered to ‘vulnerable’ groups by those in authority. In this context, to be ‘in care’ is a signifier of either physical and emotional neglect, abuse or significant need. This shift from a primarily affective and private domain to the public domain of state intervention and legislation is evidenced in the proliferation of statutes in this area. In the UK, since the National Assistance Act (1948) that serves as one of the cornerstones of welfare capitalism, the problem of care has been subject to constant legislative interventions. If we take the last fifteen years as an example, each of the following pieces of legislation sets out to regulate the organisation, standards, management and financing of this thing called care. Thus we have the Health and Social Care (Community Health and Standards) Act 2003, Community Care (Delayed Discharges) Act 2003, Carers (Equal Opportunities) Act 2004, Health and Social Care Act 2008, Personal Care at Home Act 2010 and the Health and Social Care Act 2012. (I should point out that this is not a full list of all the regulatory frameworks relating to care but it suffices as an example of the degree to which care has become a key political and legal concept.)

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This ‘will to legislate’ (which continues unabated in the face of the dismantling of the welfare state) has a number of effects, the most obvious of which is the professionalisation of caring and the division of what we now describe as ‘caring professions’ into multiple domains of expertise and specialism. One of the most recent statutes in the UK, the Health and Social Care Act 2012, enacts the formation of a Health and Care Professions Council that oversees standards of conduct and the performance of members of a caring profession. This includes a duty to consider the establishment of a voluntary register of previously ‘unregulated social care workers’ (section 25G).22 The Caring Careers website23 lists thirty-eight specific job profiles in the field of care that range from care assistant to driver with caring duties to residential home manager. These roles are supported in England by a framework of national vocational qualifications (NVQs), focusing primarily upon the candidate’s comprehension of the statutory framework that prompts the need for accreditation and regulation in the first place. These examples show us the degree to which the current meaning of care is inseparable from its ascribed statutory definitions, its place within government policy and regulatory practices, and the disciplinary agendas of specific fields of academic inquiry and the development of distinct areas of expertise. Degrees in occupational health, speech therapy, social work, early years and nursing are all relatively recent phenomena and these, in turn, feed into the development of lower-level qualifications and educational frameworks. Today in the West, care has become an industry that encompasses multiple forms of intervention delivered by trained and increasingly regulated employees – mainly poorly paid and often migrant women – to particular recipients and as such it operates outside the emotional and personal realm that underpins earlier definitions of care as pain, sorrow, grief or solicitude. The social and legal recognition of ‘non-professional’ carers in recent UK legislation such as the Carers (Recognition and Services) Act 1995, the Carers and Disabled Children Act 2000 and the Carers (Equal Opportunities) Act 2004 is clearly part of this historical process. Providing the new legal category of the non-professional carer with a legally protected status and a range of rights and obligations, the significance of this legislation for the previously unrecognised (though still unpaid) work of a predominantly female constituency of carers cannot be denied. Yet it also clearly feeds into social and cultural perceptions of caring as somehow discontinuous with normative familial and emotional relationships. To become a ‘carer’ is to take on an identity that is somehow supplementary or distinguishable from one’s role as a partner, a sibling or a child. The significance of this construction of care within legal and governmental discourse has major ramifications for recipients of care and for this relatively recent category of the non-professional carer. The notion of ‘care’ as a category of support that requires specialist intervention and that should be separated from normative familial relationships certainly underpins contemporary popular discourses around disability. For Vic Finkelstein, this process is responsible for the social production of disability as a form of welfare dependency via a process in which the provision of informal support within the home was gradually replaced by that of professionalised care, first in institutional settings and then as managed ‘care in the community’.24 This, he argues,

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starts with the isolation of those people most dependent upon assistance and thus lays the foundation for a perception of disabled people as ‘vulnerable, special and dependent’, requiring the input of a range of expert professionals charged – by virtue of their expertise – to make decisions about their lives.25 For Finkelstein, the ‘culture of care’ that currently dominates thinking about disability is ‘deliverer’- rather than user-determined and integral to the development of what he describes as ‘passive dependency upon experts’ and the social exclusion of disabled people as active citizens: In the ‘care’ culture disabled people’s rights are detached from basic human rights; such as the right to choose, the right to privacy and, most important for an active citizenship, the right to have a defining influence on the nature and structure of the supportive services that one is entitled to use.26 Finkelstein describes the emergence of a culture of care in which care is systemically separated from the private realm of affect and defined in relationship to concepts of expertise, professionalization, and regulatory powers and statutory frameworks. This culture is predicated upon the assumption of a profoundly asymmetrical relationship between carers and those in receipt of care and upon a perception of caregiving as an activity that is separable from normative emotional relationships and obligations. This process gives rise to a notion of caring as a particular kind of burden for so-called ‘non-professional carers’. Indeed, one of the underlying principles of the Carers (Equal Opportunities) Act is that the work of caring should be recognised as impeding the self-realisation and life chances of the carer. This shift in the meaning and perception of the work of care is one that intersects in complex ways with what Nancy Fraser terms the ‘politics of recognition’, ‘a new constellation in the grammar of political claims-making’ in which identity politics (claims for recognition on the basis of what we now describe as ‘protected characteristics’ such as gender, sexuality, race and so on) has displaced claims for redistribution.27 There is a compelling logic to the argument that these shifts in the concept of care on some level occur in tandem and in support of women’s hitherto unacknowledged labour as carers. Thus the Carers (Equal Opportunities) Act can legitimately be viewed as an important piece of legislation for women who constitute the majority of ‘non-professional’ (that is, unpaid and ‘unqualified’) carers. However, what this statutory recognition of ‘equal opportunities’ for carers obscures is the persistence of the structural conditions that underpin the social and economic inequalities that make the work of caring so difficult. We can contextualise the kind of stripping of the collectivist assumptions of identity politics described by Fraser in relation to the broader entrenchment of neoliberal discourse that prioritises individual ‘choice’ rather than social obligation or mutuality as the key to self-realisation. The incursion of the language and logic of the market into conceptions of human filiation that Zygmunt Bauman describes as a form of ‘liquid love’ is manifest in every account of dementia care that proclaims ‘my mother’s dementia ruined my life’ (a shortened version of the implicit assumption with which Sebold’s Almost the Moon begins).28 This particular conception of the ‘cost’ of care

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sustains a fantasy investment in the notion of an unfettered autonomy that dementia care or looking after a dying relative somehow disrupts. Of course, this particular fantasy of unimpeded self-realisation is doomed to failure not only because it is unable to accommodate the inevitability of human impairment and dependency, but also because it is predicated upon the ideological misrecognition of the origins of the problem, an example of Bauman’s doomed individual hopelessly searching out biographical solutions to systemic contradictions.29 We are prompted (and this is evident in David Cameron’s Dementia Challenge speech that I mentioned earlier) to imagine that the problem is primarily dementia rather than the distribution of resources and management of care at the end of our lives. What I am trying to identify here is a perfect storm of competing and irreconcilable forces. This is to foreground some of the ideological tensions that underpin the concept of care today. In contemporary society, the work of caring is still primarily conducted within the family and by women but it is increasingly conceived of as something discontinuous with ordinary family life and at odds with the self-realisation and quality of life of carers. Outside the home, caring remains grossly undervalued as a form of labour (indeed, a recent report described a significant proportion of carers in the UK working below the minimum wage) and the proliferation of regulatory frameworks that circumscribe this work and which constitute the ‘professional’ relationship between carers and the recipients of care further removes ‘affect’ and other non-measurable interactions/qualities from this kind of work.30 Care – in these senses – thus describes a profoundly asymmetrical and atypical, rather than reciprocal and ordinary, relationship in which the person who needs additional support is constituted as either an impediment or an obstacle to the self-realisation of the carer, or as dependent, passive and vulnerable. And all of this takes place in a frantically death-denying cultural milieu in the West, the impossible logic of which holds us increasingly accountable for our own health and wellbeing via a discourse of moral responsibility that all too easily renders illness and incapacity a matter of personal laxity – a failure to take the requisite supplements, drink enough green tea or work up enough of a sweat in the gym.31 Vulnerability, in this sense, emerges as a failure of will or spirit, the loss of bodily control as some personal deficiency.32 It also serves as a visible manifestation of the limits of medicine and the kind of promissory regimes of medical expectation and hope that Sarah Atkinson discusses in her discussion of organ transplantation in this volume.33 This is perhaps one reason why dementia plays such a prominent role in current debates around the meaning of care. In the age of the genome and the promise of unprecedented powers over life itself, the steadfast incurability of Alzheimer’s disease has come to stand as an intransigent reminder of the limits of our self-sufficiency and control, of our ultimate vulnerability to impairment and death, and of the limited powers of contemporary medicine. This is not in any way to suggest that caring or requiring additional support is experienced in a universally negative or singular manner: far from it. However, it is to argue that the structural transformations I have outlined have a significant bearing upon the ways in which care and caring are perceived and represented in popular

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cultural discourse. What it is crucial to underline is that it is precisely this conjunction of institutional, political, legal, social and economic determinants that is occluded in the popular rendering of care and terminal illness as personal tragedy and subjective violence, and that this kind of elision is profoundly ideological. To imagine that we can straightforwardly distinguish the personal and private from the social and political is, as Fredric Jameson notes in a different context, ‘worse than an error: namely, a symptom and a reinforcement of the reification and privatisation of contemporary life’.34 It is in this context, and with Jameson’s assertion that there is nothing that is ‘not social and historical . . . and, in the last analysis, political’ in mind, that I want to return to, and think through, the symbolic significance of the troubling and transgressive violence that pervades the descriptions of dementia we see in the work of Sebold, Ernaux, Hilden and, in the following section, Frances Hegarty’s Let’s Dance (1995).35

Violence, Care and Dementia in the Literary Imagination Dementia, as it is currently popularly conceived, is a key element in the transformation of the meaning of care that I have been tracing. The historical trajectory of this essentially unknowable and complex syndrome from a condition associated with ageing to its contemporary incarnation as ‘Alzheimer’s disease’ has a number of important effects in relation to conceptions of care and its correlative, dependency.36 When David Cameron speaks about the ‘Dementia Challenge’, the disease model that he invokes serves to support a particular ideological agenda with regard to the necessity of an engagement with the market and global pharma as a means of addressing the challenges presented by the increasing prevalence of dementia cases. However, the medical model of dementia also attributes the ‘challenges’ of this condition to its particular pathological signs and symptoms, thus placing the systemic and social dimensions of living with a terminal condition and the management and experience of care in parenthesis. It is worth noting here that it is only in the wake of the entrenchment of the medical model of Alzheimer’s in the 1980s that the concept of caregiving as a particular kind of burden (social, economic, psychological, emotional) takes shape in qualitative and quantitative analyses of the ‘costs’ of an ageing population and dementia care, and in political debates about the future of social care and the distribution of ‘limited’ resources.37 In other words, this particular way of thinking about dementia as ‘Alzheimer’s disease’ comes to articulate a broader range of societal transformations and the ideological tensions that traverse them. It is also in this period that the problems of caring for someone with dementia become a central (rather than peripheral) narrative concern in literature and film.38 Like Alice Sebold’s Almost The Moon, Frances Hegarty’s novel Let’s Dance presents the cognitive effects of dementia as the key to the revelation of the dark violence at the heart of the family. Returning to the family home to care for her mother, Serena, Isabel Burley has an initial (and narcissistic) fantasy about caring for her ‘beloved mother’, which is systematically destroyed by her mother’s jealousy, physical and emotional abuse, and finally her part in facilitating a burglary in which Isabel is repeatedly

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raped whilst her mother dances. Whilst early in the text Isabel enjoys ‘thinking of herself as the kind of lady’s companion/governess found in the Jane Austen she had once adored’ (p. 99), the narrative refuses this romantic plot, culminating in Isabel’s decision ‘never, ever . . . to be some child’s mother’ (p. 277). Hegarty’s novel is similarly fixated with the relationship between dementia, sexual violence and the violation of normative familial bonds. Early on, Serena and Isabel dance together: Serena had withdrawn slightly, to arms-length. Enough distance to look into Isabel’s face, caress her cheek, pinch it playfully, but in a way which hurt a little. Isabel had a dim memory of scratches over her buttocks from a lover. Affection carried scars. (p. 31) This correlation between love and violence is manifest in the revelation of the ‘secret’ at the centre of the story: namely, why Isabel was shunned by the community as a teenager. This is revealed to be a consequence of her Aunt Mab’s apparently ‘loving’ decision to destroy Isabel’s relationships (and thus liberate her) by sending obscene letters to her boyfriends as if from Isabel herself. For most of the narrative it is unclear whether the handwriting on the letters belongs to Serena, Mab or Isabel, as they all share the same hand. This uncertainty as to the origin of the obscene letters is one aspect of an overdetermined and pervasive sense of violence and violation that introduces a sense of constitutive, epistemological uncertainty at the level of the authorial narrative itself. The very description with which the novel begins encapsulates this in the ambivalence of its representation of the house: the relationship between subjectively experienced violence (in its myriad expressions) and its systemic underpinnings – ‘A perfectly beautiful house which also managed to be ugly’ (p. 1). The focalisation of the narrative through the multiple perspectives of the novel’s characters produces a form of deracinated perspectivalism, severed from any stable reference point in relation to which people’s actions or motivations might be judged. Isabel moves between fantasies of herself as some devoted daughter from Austen to cannibalistic imaginings of ‘Mother’s flesh, roasted rare, black on the outside, pink in the middle’ (p. 29). Her brother Robert moves through the family home calculating the value of its contents (‘sun streamed through the dining-room windows reflecting the table, which Robert was relieved to see had not been chopped up for firewood. More than a thousand pounds, the valuer had said’ [p. 81]). Care is thus merely a semblance that masks a range of ulterior motives; the narrative embodies a kind of rampant narcissistic individualism in which the family is nothing more than an assemblage of individuals out for themselves and in which care is fundamentally self-serving, selfish or abusive. Both The Almost Moon and Let’s Dance correlate dementia care with a kind of violent obscenity at the level of both plot and description. We see this in the portrayal of Serena’s fantasies about killing herself by sticking a knife ‘right up her private bits’ (p. 25), in the description of Isabel’s rape and in Helen Knightly’s descriptions of her

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mother’s vagina and the stench of her bowel movements. The explicitly violent and disturbing nature of these descriptions is difficult to assimilate and seems redolent of a kind of inarticulate or inchoate anger that resists explanation in relation to plot or character. The question, then, is how we should read these expressions of violence and horror at the heart of the family? My aim in this chapter has been to identify the way in which care and abuse have become yoked together in popular consciousness and to suggest that simply to attribute this to the actions of ‘rogue individuals’ obfuscates the systemic contradictions that have produced both care and dementia as sites of ideological overdetermination. In the novels and memoirs that I have discussed, it is not simply the case that caring for someone with dementia is presented as difficult; it becomes something so violently destructive that it decimates the family (perceived as the traditional locus of care) in a manner that is so overwhelming that it comes to infect the entire discourse of the text itself. There is a symbolic violence in the novels, in particular at the level of descriptive language, that makes the very experience of reading feel like an act of complicity in their violation of intimacy and personal, private space. There is correlation in these representations between the vulnerability associated with dementia and the transgression of a range of taboos (from intimations of incest and rape to expressions of filial hatred and murder), as if the condition itself is the source of such unspeakable horror as to precipitate the collapse of normative familial, social and sexual codes of behaviour. I would argue that although both novels deploy narrative conventions that preclude the establishment of a stable position or ethical framework outside the text (via first-person narrative in The Almost Moon and focalisation in Let’s Dance), this does not mean that our focus must remain at the level of anomic individualism; rather – and this is the crucial point – the fact that the texts seem to repeat a structure of violence in relation to care suggests that it is this very structure that must be the site of critical inquiry. I would argue that the excess of violence manifest in both novels and in the memoirs by Ernaux and Hilden is symptomatic of the difficulties we face in conceptualising or articulating the relationship between our immediate experience and wider structural coordinates.39 If the concept of care is presented as a form of personal crisis and tragedy, as is evidently the case in dominant assumptions regarding dementia expressed at the level of governmental policy by David Cameron, then this in turn engenders serious theoretical, ethical and political consequences. As I have begun to demonstrate above, debates around care and abuse that focus on individual suffering or ‘bad apples’ fail to acknowledge the wider systemic determinants that underpin these experiences. I would argue that a symptomal reading of works such as The Almost Moon and Let’s Dance alongside memorial texts such as I Remain in Darkness and The Bad Daughter enables us to connect the excess of violence manifest in the descriptions of corporeal and cognitive decline with the contradictions and systemic violence of our current culture of care.

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Further Reading Zygmunt Bauman, Liquid Love: On the Fragility of Human Bonds (Cambridge: Polity, 2003). Lawrence Cohen, No Aging in India: Alzheimer’s, the Bad Family and Other Modern Things (Berkeley: University of California Press, 1998). Fredric Jameson, The Political Unconscious: Narrative as a Socially Symbolic Act (Ithaca, NY: Cornell University Press, 1981). Annette Leibing and Lawrence Cohen (eds), Thinking about Dementia: Culture, Loss and the Anthropology of Senility (New Brunswick, NJ: Rutgers University Press, 2006). Aagje Swinen and Mark Schweda (eds), Popularizing Dementia: Public Expressions and Representations of Forgetfulness (Bielefeld: Transcript, 2015). Slavoj Žižek, Violence: Six Sideways Reflections (London: Profile, 2008).

Notes 1. Panorama: Behind Closed Doors: Elderly Care Exposed, television, producer Joe Plomin. London: BBC, first broadcast 30 April 2014. 2. ‘North Somerset Care Home Staff Sentenced for Ill-treating Resident’, BBC News website, 20 June 2014 (accessed 20 August 2014). 3. ‘Care Worker Charged Following Probe into Abuse of Elderly Residents at Urmston Care Home’, Manchester Evening News, 2 September 2014 (accessed 6 September 2014); and ‘Carer found Guilty of Ill-treatment of Dementia Patients’, Crown Prosecution Service Wessex, online report, 26 September 2014 (accessed 30 September 2014). 4. See National Center on Elder Abuse website (accessed 30 September 2014). 5. See K. Broyles, ‘The Silenced Voice Speaks Out: A Study of Abuse and Neglect of Nursing Home Residents. A Report from the Atlanta Long Term Care Ombudsman Program and Atlanta Legal Aid Society to the National Citizens Coalition for Nursing Home Reform

(accessed 4 January 2016). 6. ‘Carer Jailed for Salisbury Milton Manor Care Home Abuse’, BBC News website, 24 October (accessed 30 September 2014). 7. See, for example, Abuse Compensation Billed as a ‘Specialist Abuse Compensation Service’ (accessed 30 September 2014). 8. Alzheimer’s Society, Position Statement, ‘Mistreatment and Abuse of People with Dementia’ (accessed 30 September 2014). 9. Slavoj Žižek, ‘Passions of the Real, Passions of Semblance’, in Welcome to the Desert of the Real: Five Essays on September 11 and Related Dates (London: Verso, 2002), pp. 5–32 (p. 29).

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10. Alice Sebold, The Almost Moon (London: Picador, 2008), p. 3. Further references to this text will be placed in parenthesis in the body of the chapter. 11. See Annie Ernaux, I Remain in Darkness (New York, Toronto and London: Seven Stories Press 1997), p. 15. I discuss the ethical implications of Ernaux’s descriptions of her mother in relation to the emphasis upon intersubjectivity in work on personhood in Lucy Burke, ‘Oneself as Another: Intersubjectivity and Ethics in Alzheimer’s Illness Narratives’, special issue, Narrative Emotions and the Shaping(s) of Identity in Narrative Works: Issues Investigations & Interventions 4.2 (2014), pp. 28–47 (accessed 4 January 2016). 12. Julie Hilden, The Bad Daughter: Betrayal and Confession (Chapel Hill, NC: Algonquin Books, 1998), p. 119. Further references to the text will be placed in parenthesis in the body of the chapter. 13. Slavoj Žižek, Violence: Six Sideways Reflections (London: Profile, 2008), p. 1. 14. Ibid., p. 2. 15. Prime Minister’s Foreword, in Prime Minister’s Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015 (Department of Health, March 2012) , p. 3 (accessed 31 May 2015). 16. Ibid. 17. For transcripts, see G8 Dementia Summit Prime Minister’s Speech and Global Legacy Event: David Cameron’s Speech (accessed 30 September 2014). 18. Fernández, Snell and Wistow have identified significant changes in the patterns of social care provision in England between 2005 and 2013, amounting to a 26% reduction in the number of recipients of care as a consequence of cuts to local authority funding. See José-Luis Fernández, Tom Snell and Gerald Wistow, ‘Changes in the Patterns of Social Care Provision in England: 2005/6 to 2012/13’. PSSRU Discussion Paper, 2867 (London: Personal Social Services Research Unit, London School of Economics and Political Science, 2013). 19. Lucy Burke, ‘The Locus of Our Disease: Narratives of Family Life in the Age of Alzheimer’s’, in Aagje Swinnen and Mark Schweda (eds), Popularizing Dementia: Public Expressions and Representations of Forgetfulness (Bielefield: Transcript, 2015), pp. 7–25 (p. 15). 20. ‘Care’ in Oxford English Dictionary (n.d.) in online version (accessed 20 May 2014). 21. Ibid. 22. See Health and Social Care Act 2012 (accessed 30 September 2014). 23. (accessed April 2015). 24. ‘Re-Thinking Care in a Society Providing Equal Opportunities for All’, Discussion Paper by Vic Finkelstein, Honorary Senior Research Fellow, School of Health and Social Welfare, Open University, 3 March 1998; available to download via the University of Leeds, Disability Archive UK (accessed 27 May 2013), n.p. 25. Ibid. 26. Ibid.

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27. Nancy Fraser, ‘Rethinking Recognition’, New Left Review 3 (May–June 2000), pp. 107–20 (p. 107). 28. See Zygmunt Bauman, Liquid Love: On the Fragility of Human Bonds (Cambridge: Polity, 2003); and Burke, ‘The Locus of our Disease’, pp. 11–13. 29. Zygmunt Bauman, Society Under Siege (Cambridge: Polity, 2002), p. 195. 30. See Social Care Workforce Research Unit, King’s College, London, ‘Estimating Probabilities and Numbers of Direct Care Workers Paid under the National Minimum Wage in the UK: A Bayesian Approach’, Social Care Workforce Periodical 16 (December 2011) (33 pages). 31. For a discussion of this, see Regula Valérie Burri and Joseph Dumit, ‘Introduction’, in Burri and Dumit (eds), Biomedicine as Culture: Instrumental Practices, Technoscientific Knowledge and New Modes of Life (New York and Oxford: Routledge, 2007), p. 4. 32. David B. Morris, for example, describes death as ‘a scandal in postmodern times’. See Illness and Culture in the Postmodern Age (Oakland: University of California Press, 2000), p. 15. 33. See Sarah Atkinson, ‘Care, Kidneys and Clones: The Distance of Space, Time and Imagination’, in this volume, pp. 611–26. 34. Fredric Jameson, The Political Unconscious: Narrative as a Socially Symbolic Act (Ithaca, NY: Cornell University Press, 1981), p. 20. 35. Ibid., p. 21; Frances Hegarty, Let’s Dance (London: Viking, 1995). Further references to Hegarty’s novel will be placed in parenthesis in the body of the chapter. 36. There are numerous accounts of the history of the biomedicalisation of dementia in the twentieth century. See, for example, Lawrence Cohen’s brilliant No Aging in India: Alzheimer’s, The Bad Family, and Other Modern Things (Berkeley: University of California Press, 2000). 37. A review of journal articles in the MEDLINE database indicates that the concept of care as burden (and of caregiver burden as a recognised construct in this scholarship) emerges in tandem with the process that sees dementia re-constellated as ‘Alzheimer’s disease’. The first journal article to describe the various emotional costs of dementia care was published in 1980. See Steven Zarit, Karen Reeves and Julie Bach Peterson, ‘Relatives of the Impaired Elderly: Correlates of Feelings of Burden’, The Gerontologist 20.6 (1980), pp. 649–55. 38. See Burke, ‘The Locus of our Disease’. 39. I am indebted here to Fredric Jameson’s concept of ‘cognitive mapping’. See Fredric Jameson, ‘Cognitive Mapping’ in Michael Hardt and Kathi Weeks (eds), The Jameson Reader (Oxford: Blackwell, 2000), pp. 277–87.

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35 CARE, KIDNEYS AND CLONES: THE DISTANCE OF SPACE, TIME AND IMAGINATION Sarah Atkinson

‘We lived, as usual by ignoring. Ignoring isn’t the same as ignorance, you have to work at it.’ Margaret Atwood, The Handmaid’s Tale1 are as a concept is central to any engagement with health, ill-health and the practices that aim to prevent, mitigate or cure, and the term itself is mobilised in a variety of different ways and at a variety of different scales. The vibrancy of the medical humanities as a relatively new field of inquiry has principally derived from the elaboration of experiential accounts of differential and dynamic conditions of health. Given this particular emphasis, attention to care and caring practices has predominantly concerned the nuanced and complex relations of care at an interpersonal and proximate scale. However, in contemporary landscapes of healthcare, given that the resources for caring for ourselves or for those whom we cherish in our immediate environment are often scarce and demand greatly outstrips the supply available within a national system, healthcare resources increasingly are sourced globally: from the migrant care worker2 through to the transplant tourist.3 A major challenge, then, for an expanded and more critically directed field of medical humanities is to extend the geographical reach to renegotiate encounters with the central concepts of our field at different spatial and temporal scales. Several chapters in this Companion take up the challenge to develop medical humanities as globally situated and with critical attention to the uneven flows and distributions of resources, including those of power and care.4 This chapter explores the dilemmas, paradoxes and challenges in how we care at a global scale with reference to the unequal availability and accessibility of transplant technology. In the medical humanities, we often draw our insights from imaginative literature, a source that can be read in many different ways. As a social scientist examining the practices and tensions in care at different scales, my reading of imaginative fiction attends specifically to the issues, rhetoric and modes of argumentation mobilised or disclosed within different imagined scenarios. Unlike much of the emergent work on global medical humanities, my focus is not on the historical and postcolonial roots of current global inequity and treatment of differentiated bodies, as the ways

C

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in which access to new technologies follows established inequalities are already well documented.5 Instead, I attend to existing and possible future rhetorics of care in relation to the relatively recent technology of organ transplant. In particular, I draw out the tensions in deciding for whom we care and for whom we do not care, and argue that the privileging of some bodies over others requires explicit rhetorical, discursive and enacted strategies for both caring and not caring.

The Case of the Transplant Tourist Autobiographical narratives offer nuanced accounts of the experiences of altered health and of the author’s journey in seeking healthcare provision. Such accounts furnish mainstream medical humanities with a ‘database’ of experiential knowledge from which to redress the invisibility of those actually living with conditions of illhealth prevalent in traditional medical and educational accounts. However, first-hand accounts of the experiences of sourcing medical care through a global market are few. Larry’s Kidney is a rare autobiography of transplant tourism recounted by Daniel, who has been asked by his cousin Larry to accompany him in seeking a kidney illegally in China.6 The focus in this account primarily on the experiential aspects of their journey reveals how such narratives may occlude ethical aspects. Daniel nods towards the ethical concerns of Larry’s quest only twice in the account, making clear he has decided to shelve his reservations and respond to his cousin’s request. It falls to an expatriate in China to voice objections: ‘ “I’m just against checkbook medical tourism,” he declaims flatly. “There are two million people waiting for organs in China. It’s repugnant for cowboys to come in and try to jump ahead of them.” ’7 In response, Daniel effectively asserts that any care related to unknown others is trumped by care related to those we know intimately: ‘ “All I’m saying is that under ordinary circumstances I might be tempted to be dogmatic too,” I tell the man. “But when it’s your own relative’s life on the line, you tend to see a few more shades of grey” ’ and ‘ “Well, I’m suspending all ethical considerations because he’s my cousin.” ’8 Despite Daniel’s declaration that he’s effectively going to shelve worrying about the wider ethical concerns in favour of the intimate care for his cousin, he also works at ignoring the issue through a justification grounded in different cultural ethics: ‘ “But here people don’t have the same general attitude against it that there is in the West. It’s not frowned upon ethically the way it is in much of your United States.” ’9

Scales of Care These few quotations from Larry’s Kidney indicate a tension between different scales and practices of care, but this is a tension explicitly ignored in preference for attention to practical and emotional experiences.10 The emerging global pathways for sourcing caring resources, stretching beyond the reach of national regulatory agencies or locally shared values and sanctions, present new challenges for how we conceptualise care and for whom we care.

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Different understandings and definitions of care draw on at least two etymological roots, which together inflect the concept with an inherent tension. On the one hand, the Latin root ‘cura’ relates the immediate and intimate emotional bonds of love or friendship as a care directed to others that is characterised by both devotion and worry for their wellbeing. On the other hand, the Latin ‘cogitare’ is commonly translated in terms of a distanced care of others, manifest through contemplation, attention or interest but which still involves a commitment to the object’s wellbeing.11 Care is presented as a broad attitude and way of being in the world in which our focus is directed away from the self and towards relationalities with others; such relationalities are characterised on the one hand by affection and commitment, and on the other by concern and responsibility.12 These two etymological origins of care also inform contemporary feminist theorisations that commonly make a distinction between ‘caring for’ known and proximate others and ‘caring about’ issues and others beyond our immediate everyday lives.13 This distinction extends beyond people to embrace other life forms, places and issues: ‘caring for’ our pets, our gardens and our local, immediate political issues compared with ‘caring about’ biodiversity, rainforests or poverty and global justice. At the heart of this distinction is an engagement of different emotional intensities. We are emotionally invested in our immediate spaces of material place, persons and issues; ‘caring for’ people and things close to us is treated as natural and unproblematic in its cultivation even whilst simultaneously treated as gendered, undervalued and largely invisible.14 A failure to care for those whom society assumes you naturally should is met with an abhorrence and condemnation, the extremes of which are reserved for women in general and mothers in particular.15 By contrast, the cultivation of ‘caring about’ more distant others may be acknowledged as desirable, a wise collective investment in social coherence as well as personal insurance, but this requires the collective ratification of formalised structures to enable us to express such caring within certain limits. The collective agreement of how we care about others takes different form in different societies; in the UK, the National Health Service (NHS) reflects a collective agreement to provide healthcare to all at the point of delivery and through a progressive form of taxation; elsewhere, health systems funded through private insurance assert an individualised responsibility for healthcare but a collective care for regulating provision. ‘Caring about’ is treated as a matter for an impartial, unemotional attention to social justice and egalitarian rights.16 Although willingness for collective care about one another may evoke emotional intensity, this is an intensity of commitment invested into an idea, of justice, of solidarity or of morality, rather than an intensity of affective attachment to the specific other. Moreover, caring about unknown others, places or issues is not understood or treated as natural and self-evident; on the contrary, the implicit default position is that it is natural not to care about others and that to do so requires a rationale and some intentional effort. These diverse modalities of caring collectively about others are shaped by complex interactions of vested interests and cultural currencies in terms of how we conceive of ourselves, our bodies, health and the possibilities for healthcare. These complex

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interactions have, to date, been confronted largely through formal structures within the bounds of the nation-state. Where caring about an issue or distant other can be assigned a monetary value, modalities for expressing such care are relatively easily mobilised. Thus, we collectively agree on how to fund public institutions of care; we collectively agree to government spending on international development. But where ‘caring about’ depends on less well-established or easily engaged routes for expression, as when it is evoked through a rhetoric of advocacy, social justice or morality, the pathways for translating emotional care into a responsive practice are not obvious. An emphasis on this translation from intention to action challenges the primacy of ‘caring about’ as an attitude; whilst care may indeed be usefully comprehended as first and foremost an attitude to our ways of being in the world and our relationalities to others, if such an attitude of care is not also translated into a practice of care, it signifies little more than token sentimentality. There is, therefore, a potential inherent tension in how these differentiated trajectories of personal and abstract care may relate to one another. The relation may be complementary: a commitment, attitude and policy of caring about unknown others may be necessary to enable both the attitudes and opportunities to enact ‘caring for’; a capacity of caring for immediate others may constitute an affective attitude of compassion that extends into the expression of ‘caring about’.17 However, if the resources and practices needed to fulfil ‘caring for’ are in competition or conflict with those needed to fulfil ‘caring about’, the tension of caring will be resolved through accommodations derived from both hidden, unspoken assumptions and the exercise of specific arguments. The emerging critical medical humanities are particularly well situated to disclose and interrogate the discourses and rhetoric that inform the accommodations made in specific case examples. The feminist ethic of care offers an important response to the tension between ‘caring for’ and ‘caring about’.18 The approach emphasises the certain interdependence of all humans over the life-course; at different points in our lives we are all likely both to receive care and to provide care. As such, the desirable citizen is not autonomous and independent, and that care, far from being a marginal activity, is in fact the central activity in human social life: ‘care ethics raises caring, nurturing, and the maintenance of interpersonal relationships to the status of foundational moral importance.’19 Understood this way, it follows that policy should position caring relations as its primary goal: ‘In short, care is society’s work in the sense that care is absolutely central to our individual and collective survival.’20 These various engagements with care all implicitly suggest that a lack of ‘caring about’ is something of a default and passive position; we are without care, careless, inattentive or ignorant about the relations shaping the circumstances of others. As such, our lack of care, our care-lessness is an attitude or way of being in the world but one that does not entail any action, practice or doing, an attitude constituting a state of ‘uncare’.21 The attention is given to the possible strategies we have to put in place to enable and facilitate an active state of ‘caring about’: a political commitment to public provision, a monetarised online charitable consumer experience that benefits distant others or an overall ethic that makes care central to society’s norms. In contrast, I will

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argue in line with the chapter’s opening quotation from Margaret Atwood that we are not merely ignorant but actively ignoring and, as such, we engage in strategies through which we are enabled and enable ourselves to sustain the passive ignorance of ‘uncare’ and to practise an actively ignoring ‘not-care’. These strategies for ‘uncare’ and ‘notcare’ draw on the distances of space, time and imagination.

Imagining Strategies of Care and Practice Rapid advances in biomedical technologies for reproduction, reconstruction and regeneration include the transplantation of organs from one body to another. Alongside such ‘miracles’ of modern medical practice, contemporary processes of globalisation have eased travel and trade to generate new spaces, markets, rhetoric and imaginaries for medical care at an international level. These new possibilities to reinvent and recycle ourselves are accompanied by new ethical challenges related to resource flows, inequalities of access and the nature of care on a global scale. Imaginative fiction offers medical humanities at least two entry points in developing a global and critical engagement with the practices of care. Firstly, literature and film enable their audiences to encounter the issues, to confront their own reactions in relation to care and to reflect on the implications of the rhetoric for different practices of care. As such, engagement with the creative imaginings of future or alternative dystopic societies and of relatively unfamiliar aspects of contemporary societies can illuminate the ways we do and might practise care, uncare and not-caring. Moreover, and secondly, as the conduit for our reflections on different practices, scales and tensions of care, these creative imaginings have their own agency as strategies themselves for care, uncare and not-caring. To effect a critical medical humanities, we need not only to examine the differentiated modes of argumentation for different practices of care that are conceived within creative worlds, but to engage critically with how imaginary practices themselves inform our practices at local and global scales.

Imagining Future Dystopias Imagined future worlds free us to play with the potential limits of the logics of our own caring practices. Creative imaginings of future or alternative dystopic societies have positioned the population’s wellbeing as maintained through the medical exploitation of a parallel sub-class. In such imaginings, the moral position is always unequivocal: the uncaring practices are condemned and humanity is restored to exploited bodies. The insights for our own contemporary practices of care may be drawn from the various discourses that are used by the dominant population to justify treating and categorising their supplier population as non-human. In the New Earth of the year 5 billion and 23, imagined by the creators of the BBC’s Dr Who,22 the hospital run by the Sisters of Plenitude, catkind nuns, can cure all human ailments. However, it transpires that the nuns’ healing expertise has been gained through macabre means. The sisters have accelerated their

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rate of knowledge acquisition by experimenting on thousands of human clones, which they secretly grow in vaults and infect with diseases. The sisters suppress the clones’ potential humanity through constant sedation and kill any that display resistance to the drugs and signs of awareness and thought. The actions of the sisters are illegal in the society of New Earth but it seems no one is looking too closely at the source of the evident gains. Similarly, in Michael Bay’s film, The Island, the use that is being made of technology to exploit a sub- or non-human class is not condoned; customers think they have purchased the growth of customised, matching organs.23 In this case, it is the scientist–businessman who has found it more convenient and successful – for which we understand profitable – to produce whole-body clones. But again, we intuit a society happy not to ask too many questions about the procedures making good their investments. Indeed, when the non-clone customer confronts the reality of his cloned body double, acting in a caring and ethical manner proves too difficult in the face of his potential mortality. The society of Kazuo Ishiguro’s novel Never Let Me Go has also invested in clone technology as a response to the growing medical demand for organ transplants in its population.24 However, in contrast to New Earth and The Island, in Ishiguro’s world cloning for the purpose of increased and customised organ supply is expressly condoned by society: that is, the exploitation of the clones is openly sanctioned and, as such, requires different and collective strategies to justify their subjugation to organ harvesting. Whilst the clones are well looked after, they must nevertheless still be categorised as sub-human, even by those most intimately involved with their childhoods. A woman who collects their art work displays her abhorrence; their head-teacher admits that she always had to steel herself to face them. Ishiguro makes more explicit the ways in which discourse differentiates bodies and underpins the power relations that enable the sustainable exploitation of some bodies by others. However, unlike the discourses of racism and slavery, discrimination against the corporeal other is no longer grounded in assumed associations and disassociations of genetics and geographical origins; differentiation is not based on outward signs of potential group otherness such as colour, dress or religion but on an inward or invisible otherness defined by their personal provenance. Where two bodies intentionally share the same genetic make-up, superiority and dominance are granted on the grounds of which body is authentically human (see a related discussion in William Viney’s chapter in this volume on twins in science25). In turn, human authenticity becomes dependent on being begotten of two parents and on being the original first version; identical ‘copies’ derived through technology do not count as authentically human and, as such, have no claim to human rights. These alternative societies warn of moral perils from medical technology, but their distance in time or imagination and the clear moral condemnation with which they are treated by their authors implies that their scenarios are improbable. Collectively, as reader or viewer, we endorse the condemnation inherent in these explorations and we acknowledge the perils of new biotechnologies through enforcing strict regulation and ensuring regular public reflection and debate on that regulation. However, treating these scenarios as improbable cautionary tales may overstate both our condemnation

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and the power of regulation. Even in the setting in which the clones are most abased, the morality is tinged with a troubling ambiguity. The Sisters of Plenitude in Dr Who do not act from self-interest; they act from a professional commitment, compassion even, to care both about and for their human patients and as such justify their actions by arguing that more humane methods of research would have been too slow. This form of argumentation, whilst supporting a horrendous practice, does none the less chime with contemporary exposures of health professionals acting illegally, but for the collective good, including through body mining.26 In Never Let Me Go, Ishiguro cleverly complicates the distances of space and time by imagining a society that, apart from cloning, resonates in all respects with a British recent past. Indeed, he plays down the technology to discomfort us in relation to caring, or to what I have called uncaring, about others across a range of contemporary issues.27 Ishiguro’s novel is instructive in a further sense. The cloned young people that the novel follows through the account of Kathy largely accept their destiny as donors. There are perhaps only two moments in the book when the characters dream of bypassing their fate and at no time do they attempt to resist the path laid out for them. Thus, even those exploited by society’s practices accept them, resonant with a Nietzschean concept of the slave morality. This theme is echoed in Ninni Holmqvist’s The Unit, which imagines a most plausible future society, a near-future Sweden that has adapted its tradition of a strong collective commitment to the welfare state to encompass a collective response to the demand for scarce organs.28 At fifty, those persons categorised as non-essential must move to the closed ‘Unit’ of the title from where they will be involved in drug tests and make donations up to their death. The Unit is luxurious, the inhabitants well looked after in a similar way to Kathy and her friends in Never Let Me Go; the critical aspect here is who counts as essential and who does not. The Unit is thus populated by those without children, without established partners or not in a valued occupation; many of the population are artists. But child-care duties and natural parenthood is not quite enough, it transpires; when the main character falls in love and becomes pregnant, she cannot be reclassified and not because of bureaucracy. As an artist, as a late parent, she is already fatally designated as unsuitable to care for her child, who will be adopted by a ‘normalised’ family. She escapes with help from sympathetic workers at the facility but chooses to return, accepting her society’s values and future pathways for both her and her child. In both Ishiguro and Holmqvist’s novels, socialisation into a given set of values enables the exploitation of some by others in part because the exploited enact their own compliance with the system of collective care. Atwood, reflecting on Ishiguro, comments that the insight here may be how much we all have the capacity to accept the status quo and our embedding norms, an insight easily extended to practices of uncaring and not caring.29 Moreover, the assigned role for the designated donor ironically is a role of caring both about and directly for unknown others, and the donors are, up to a point, themselves formally cared both about and for through the collectively supported institutions they inhabit. But both Holmqvist and Ishiguro indicate the fragility of the care offered to these donor bodies in their imagined societies, as explicitly stressed to Kathy in Never Let Me Go:

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‘When I watched you dancing that day, I saw something else. I saw a new world coming rapidly. More scientific, efficient, yes. More cures for the old sicknesses. Very good. But a harsh, cruel world. And I saw a little girl, her eyes tightly closed, holding to her breast the old kind world, one that she knew in her heart could not remain, and she was holding it and pleading, never to let her go.30 Once bodies are cast as less valued, as amenable to exploitation to save more valued others, then they are already effectively categorised as lesser humans and the discourse supporting a limited caring about and for those bodies can be easily transformed into the very different justifications underpinning an attitude and practice of uncaring and not caring.

Imagining Contemporary Beneficence In contrast to the exploitative practice of organ transplants in these future or alternative imaginary worlds, fictions involving medical technology in real-world contemporary Western societies mostly explore personal beatific and emotional dimensions to donation. The sudden and unexpected loss of a child offers a narrative theme through which to explore journeys in managing grief by caring about others and to promote donation by relatives of those deceased. Two novels exemplify this particular narrative: Lauraine Snelling’s One Perfect Day and Jill Wolfson’s Cold Hands, Warm Heart.31 Both follow the emotional journeys of several characters closely connected to the child who has died and to the ill child who benefits from the donation. The focus on children underscores both the loss and the benefit by maximising the time lost and reclaimed, and renders both loss and benefit wholly unambiguous, and the unambiguous benefit of donation to save the life of an ill child affords the relatives of the deceased a form of redemption from their suffering. In a similar vein, Manuela, the central character in Pedro Almodóvar’s film All About My Mother,32 finds meaning after the death of her son through a story that ‘depends, as so many things do, on the kindness of strangers’.33 Almodóvar, however, goes further by unrolling the notion of care as embracing difference, inclusion and acceptance. As well as the stranger who now carries Esteban’s heart, Manuela encounters various others who transgress bodily norms, who ‘improvise their way through their own lives’ but who are always present for each other. Their enactment of care not only helps with practical matters but accepts and nourishes one another.34 These imaginings parallel and mirror the contemporary discourses of organ donation in affluent societies, which predominantly celebrate an altruistic caring about unknown others through the metaphor of the gift.35 Where live donation is possible, as for kidneys, the heroic and life-saving rhetoric is even stronger, yet strangely buoyed up further with commercial post-donation products such as T-shirts or jewellery, which serve both to advertise live donation and to bring the donor greater public acclaim. This shift in emphasis, from the private satisfaction of caring to public acclaim, intimates subtle shifts in the dominant discourse of voluntary caring, shifts related to organ procurement that revolve around ownership and commoditisation of bodies. The most

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common organ procurement route is through voluntary opt-in donation after death; those willing to donate sign up to a registry, carry a card or have their wishes recorded on their driving licence. However, as demand continues to outpace supply, alternative strategies to increase donation are under debate. Several countries have already introduced the controversial opt-out system for posthumous donation, including Spain and Finland, in which donation is assumed unless the deceased has made express wishes to the contrary before death.36 The issues embedded in debates in favour of and against an opt-out system for organ procurement in part turn on an associated debate on who owns the body after death. In an opt-out system, the body is effectively owned by the state to be used to care for others, unless otherwise indicated by the deceased, and, as such, the wishes of surviving relatives need no longer be sought and in theory would have no purchase over the uses made of cadaveric materials. The necessity of maintaining the viability of a healthy organ from posthumous organ donation has been accompanied by a redefinition of what constitutes death, which in turn is associated with counter-discourses and debates related to the possibilities of continued awareness and the practice of ventilation before donation.37 Such expressions of disquiet may engage philosophical and ethical considerations of what constitutes life and death, but none of these discourses suggests any move towards justifying the exploitation evident in New Earth or The Island. None the less, the inherent and growing gap between demand and supply informs the imaginary society to care about its non-cloned population through a justified not caring about its cloned bodies; this gap is a feature of the contemporary world, a gap that is rapidly increasing as technologies advance. Organ transplants, once miraculous, are increasingly normalised, such that the only barrier to stepping past death may be seen as organ availability. In new emerging discourses, some momentum towards the commoditisation of body parts is evident. The internet now furnishes registers through which to connect donors and patients, an availability of contact that potentially transforms the traditional practice of donation. Patients can make their own personal and often highly emotive pleas for assistance. The conventional mode of caring about others by donating has been to donate to the medical system, which determines who has the priority need, the recipient remaining an anonymous other, except in the case of family donations. Thus, the ethical principles established for both donating and receiving, mediated by the procedures and criteria of the medical system, are undermined. Those wary of this shift point out the perils of market-based competition for a donated organ, in which would-be recipients have to make a pitch to appeal to the caring sensibilities of potential donors who may privilege or discriminate against particular bodies in their criteria for deciding who to care about and favour with their body parts. Many of the positive literary and cinematic explorations of organ donation have centred on the loss or illness of a young person, a loss or need evoking an almost universal sympathy. For example, in Seattle in 2013, a father-of-two found a kidney donor by telling his story on Facebook – his donor came forward to care not for the ill adult man himself but on behalf of his children and their potential loss.38 Underpinning this emergent practice is a reassertion that body parts belong to their original individual ‘owner’, who holds the

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right to decide which other bodies they care about and to determine with which other bodies their parts may be incorporated. This reassertion of private ownership of body parts is implicit in Gabriele Muccino’s film Seven Pounds.39 Ben seeks redemption following his negligent, careless driving, which caused the death of seven people including his fiancée. He has identified seven people, all strangers, to benefit from what he has to offer, following his suicide, including body parts. The film provides two forms of contemporary discourse through which we might effect not caring about others. Firstly, the film focuses predominantly on the love story between Ben and one of his designated beneficiaries, and in the absence of any other likely donor, he finally sacrifices himself not for a distanced ‘caring about’ redemption but an intimate ‘caring for’ love. This motive for his suicide is clearly positioned as better than his guilt and search for redemption. With a modern focus on personal wellbeing, constructed as self-confidence and self-esteem,40 guilt and redemption become pathological in contrast to the healthy pursuit of personal happiness. In this, ‘caring for’ is clearly positioned as a superior motive than an abstract and guilt-ridden ‘caring about’, which does not bode well for broader discussions of global interconnectedness, interdependence and mutual responsibilities through ‘caring about’. But first he wants to meet them, to make sure they are worthy of his gift. However, whilst a ploy to bring the two characters together, the process of evaluating whether the beneficiaries are deserving or not invokes a long tradition of judging who is deserving of charity and social care and, conversely, who is not. The opportunity afforded by social media to choose what categories of person we care about enough to offer a gift of donation opens up issues of how scarce resources are to be allocated, who should decide and on what criteria. There is here an intimation of a quasi-market in which, although the explicit exchange of money is prohibited, bids, bargaining and biases start to inform the flow of organs, albeit a supply still dependent on gifting.

Local Beneficence and Global Markets From here it may be only a small step to a fully commoditised market. If we are deemed the owners of our original body parts, it should follow that we hold the right to sell them. The arguments against the commercialisation of body parts include the acknowledgement that markets are care-less of the large inequalities both within countries and between countries in access to transplant technology. The success of immunosuppressant drugs in transplant technology renders the acceptance of an organ possible from a far wider population pool than was the case in the early years of donation. Whilst organs may not be sold in Western societies, it is difficult to detect if a donation by an apparently consenting and caring adult has, in reality, been bought. Regulation across borders is even more challenging. Moreover, new markets for transplant tourism amplify the general concerns of medical tourism, for not only are scarce resources of finance and expertise drawn into the private sector and away from public care for the local population, but also the flow of the scarce resource of a donated organ from donor to recipient tracks and reproduces existing inequalities in flowing

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from underprivileged to privileged: from south to north; from poor bodies to rich bodies; from women to men; from black bodies to white bodies.41 Regulating organ transplantation shares challenges and responses with the governance of other global health concerns: global agreement has been drawn up through the 2008 Declaration of Istanbul informing the laws subsequently introduced in those countries endorsing the declaration.42 But making guidelines effective also needs the support of resources and attitudes. The gap between demand and supply and inequalities in ability to pay has generated a well-documented illegal trade in the unregulated movement of organs. Direct coercion, as in the extraction of organs from executed prisoners without prior or family consent, has been condemned as an abuse of human rights, a practice that, in China at least, has been modified in response to international protest. None the less, the treatment of prisoners’ bodies as belonging to the state hints at how short the distance may be towards a discourse of practice resonant with those found in New Earth, The Island or Never Let Me Go, which enables the recategorisation of criminals on death row as no longer full citizens entitled to human rights or practices of care. (Lisa Guenther, in this Companion, also discusses the exercise of power and care over bodies on death row in the US.43) Indirect coercion involves organ and kidney ‘brokers’, who encourage the sale of kidneys by those in poverty and debt. Whereas the altruistic Facebook donor donated to a known other from ‘care about’ that other’s family, the indebted seller donates to an unknown other for money through which to ‘care for’ his or her own family. The commoditisation of body parts has commonly been viewed as exploitative and abhorrent, and the practice is illegal in many countries, although there are alternative viewpoints that point out that the informal organ trade can take many different forms, each bringing different sets of ethical dilemmas.44 Furthermore, a new advocacy for a pro-market stance is now emerging. The arguments take at least two directions. Firstly, if we are to ‘care about’ meeting the current and future needs for organ transplant, then increasing organ supply through market processes justifies a pro-market policy.45 The Economist calculated that current demand for organs in the US could be met if just 0.06% of its population aged 19–65 years were to donate.46 Secondly, methodological innovations that ‘care about’ the voice of the poor themselves enable expression of a narrative of life-changing benefit for those selling their kidneys: Their reaction was: ‘Who are you to judge? Walk a mile in my shoes. You don’t know what it’s like to live in poverty.’ These men weren’t bothered by their choice. Some of them changed their lives, others squandered the money. All of them say, ‘I made money, but I also saved a life.’47 This use of people’s own voices to transform what has been viewed as exploitation into a form of liberation presents methodological, ethical and normative issues for a field like medical humanities that privileges experiential accounts. If a first-hand experiential account is taken uncritically at face value, then various practices that in many ways seem far from caring become justified and normalised. On the other hand, if people’s own accounts are dismissed as representing a false consciousness or an adaptive preference,

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then we return to privileging only the accounts of the few (see discussions elsewhere in medical humanities by Parry48 or Atkinson49). People’s own narratives are not, of course, always supportive of the status quo or complicit in their own exploitation. French folklorist Véronique Campion-Vincent in 1997 first identified a genre of local story-telling that recounted tales of organ theft, which she documented across different parts of the world. These narratives, she argued, express a unified set of beliefs in organized criminal groups of organ traffickers who use kidnapping and murder, often of children and infants, to procure human organs for a vast network of medical professionals engaged in covert transplants that yield huge sums of money both for the criminal traffickers and the medical professionals.50 Campion-Vincent interprets these narratives as reflecting a world-wide malaise with the advances of medical technology, and especially organ-transplant technology, which ‘transgresses boundaries of life and death, self and other’.51 Anthropologist and activist Nancy Scheper-Hughes argues for a different interpretation by emphasising the context of inequalities in which the poor are explicitly frightened about their potential, and in some proven cases actual, powerlessness in protecting their corporeal integrity.52 This fear of explicit coercion informs a thriller or horror film genre in which the protagonists, again usually young, have to escape capture for the purposes of organ harvesting. The horror draws on middle-class anxieties of a criminal sub-section in society through which illegal trade occurs and enables its unequivocal condemnation. The additional anxiety drawn on in John Stockwell’s film Turistas concerns the moral ambiguity of global inequalities in access to medical care.53 The tourists of the title are young people from affluent nations, which their abductors claim have been stealing organs from Brazil. The tourists will be forced to pay back the organ theft and their organs will be given to poor recipients in the favelas of Rio. Although recognising the inequalities fuelling an illegal organ trade, the film distorts caring about others into a gruesome and reprehensible global variant on progressive and redistributive taxation, which, in turn, feeds a moral xenophobia that displaces audience sympathies. There is, then, a dominant imaginary about organ trafficking and transplant tourism: it is to be universally condemned, dominated by criminal thugs, tends to occur ‘elsewhere’ from the perspective of a Western movie-going audience, and indeed has been likened to genocide or even a form of ‘neo-cannibalism’.

Conclusions The creative works presented here together with emergent discourses, narratives and personal accounts expose complexities, paradoxes and challenges for collective caring about others and particularly across global scales. In a world characterised by inequality, will caring about all others always be an elusive goal or, as in the futuristic and alternative dystopias, do we already only care selectively about some whilst denying our uncaring about others through a set of distancing strategies? Part of how we effect our uncaring is through our depictions of who, how, where and when such uncaring occurs.

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In the context of high-income countries in which donation is still predominantly shaped by the metaphor of the altruistic gift, our imagining of an explicitly ‘not-caring’ exploitative trade is tightly circumscribed, our care about such risks displaced through at least three strategies involving the distances of imagination, time and space. Firstly, we appreciate and acknowledge the potential risks of medical technologies spawning ‘not-caring’ practices, but distance our own caring about such risks by locating these into imaginary futures, futures that we will avoid becoming through existing and further regulation and public debate. Secondly, we know of examples when the use of medical technologies has resulted in ‘not-caring’ practices in contemporary medical settings but distance our own caring about such occurrences by locating these into the sphere of a criminal underclass, unreservedly condemning malpractice and supporting legislative regulation. New regulatory practices also enable examples of malpractice to be consigned safely to a misguided past (see also Viney’s discussion of the history of twin studies in this volume54). Thirdly, our caring about exploitative and illegal malpractice is further distanced by locating such practices predominantly within the settings of lower-income countries that are in need of support in policing and regulation. The rhetoric of the altruistic gift may remain the dominant discourse in both popular and policy settings, but new arguments are emergent to justify compulsory donation, commoditisation and market-based systems and which reformulate the relations between ‘caring for’ and ‘caring about’. Encounters with imaginary future and contemporary accounts of organ transplantation expose several axes around which current discourses of how we respond, practise and manage the procurement of scarce organs are in flux: ownership of our body and our body parts after we die; the right to use, sell and profit from our body parts; the claim on receiving and benefiting from our body parts; and the possibilities for recategorising some bodies as less valuable than other bodies. The chapter began with an example of the kind of autobiographical account that has informed mainstream medical humanities. The rest of the chapter complicates such accounts by demonstrating the need to position even intimate encounters within the broader relations of space, time and power. The imaginary future worlds demonstrate the work involved in justifying an exploitative and ‘non-caring’ practice, work that paradoxically draws on rhetorics of ‘caring for’ and ‘caring about’. Fictional explorations of contemporary settings disclose the shifting interplay of ‘caring for’ and ‘caring about’, and the rhetorical work involved in privileging one over the other and some bodies over others. The chapter then demonstrates the importance for those working within medical humanities of expanding the scope of our research gaze to different scales of space and time. The chapter offers such an expansion through drawing out the forms of argumentation mobilised in a range of different fictional genres and thereby highlighting the complexities of the negotiations underpinning specific, individual choices narrated in first-hand accounts. A critical medical humanities, then, in this chapter, is enacted through a close interrogation of emergent contemporary discourses located within different spatial and temporal scales that discloses the hidden but essential work that underpins strategies of ‘not-caring’ and through which we continue to effect the distancing strategies of ‘uncare’.

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Further Reading Sarah Atkinson, Victoria Lawson and Janine Wiles (eds), ‘Special Issue: Care of the Body: Spaces of Practice’, Social and Cultural Geography 12 (2011), pp. 563–654. Rosie Cox, ‘Some Problems and Possibilities of Caring’, Ethics, Place and Environment: A Journal of Philosophy and Geography 13 (2010), pp. 113–30. Carol Gilligan, In a Different Voice: Psychological Theory and Women’s Development (Cambridge, MA: Harvard University Press, 1982). Eva Feder Kittay, ‘From the Ethics of Care to Global Justice’, Jendâ Kenkyû/Journal of Gender Studies 14 (2011), pp. 113–20. Margaret Lock, Twice Dead: Organ Transplants and the Reinvention of Death (Berkeley: University of California Press, 2002). Christine Milligan and Janine Wiles, ‘Landscapes of Care’, Progress in Human Geography 34 (2010), pp. 736–54. Annemarie Mol, The Logic of Care: Health and the Problem of Patient Choice (London: Routledge, 2008). Bronwyn Parry, ‘Entangled Exchange: Reconceptualising the Characterisation and Practice of Bodily Commodification’, Geoforum 39 (2008), pp. 1133–44. Nancy Scheper-Hughes, ‘Parts Unknown: Undercover Ethnography of the Organs-trafficking Underworld’, Ethnography 5 (2004), pp. 29–73.

Notes 1. Margaret Atwood, The Handmaid’s Tale (London: Vintage Books, [1985] 1996), p. 66. 2. Eva Feder Kittay, ‘The Global Heart Transplant and Caring across National Boundaries’, Southern Journal of Philosophy XLVI (2008), pp. 138–65; Maia Green and Victoria Lawson, ‘Recentring Care: Interrogating the Commodification of Care’, Social and Cultural Geography 12 (2011), pp. 639–54. 3. Nancy Scheper-Hughes, ‘Parts Unknown: Undercover Ethnography of the Organs-trafficking Underworld’, Ethnography 5 (2004), pp. 29–73. 4. Chapters in this volume expanding a global medical humanities include: Hannah Bradby, ‘Medical Migration and the Global Politics of Equality’, pp. 491–507; Rosemary J. Jolly, ‘Fictions of the Human Right to Health: Writing against the Postcolonial Exotic in Western Medicine’, pp. 527–40; and Volker Scheid, ‘The Emergent Interface of Systems Biology and Traditional Chinese Medicine’, pp. 66–86. 5. Nancy Scheper-Hughes, ‘Keeping an Eye on the Global Traffic in Human Organs’, Lancet 361 (2003), pp. 1645–8. 6. Daniel Asa Rose, Larry’s Kidney (New York: HarperCollins, 2009). 7. Ibid., p. 75. 8. Ibid., pp. 75, 80. 9. Ibid., p. 80. 10. Paul Kingsbury, Valorie A. Crooks, Jeremy Snyder, Rory Johnston and Krystyna Adams, ‘Narratives of Emotion and Anxiety in Medical Tourism: On State of the Heart and Larry’s Kidney’, Social and Cultural Geography 13 (2012), pp. 361–78. 11. Clint Le Bruyns, ‘Re-placing Stewardship? Towards an Ethic of Responsible Care’, Religion and Theology 16 (2009), pp. 67–76. 12. Leonardo Boff, Essential Care: An Ethics of Human Nature (Waco: Baylor University, 2008).

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13. Nel Noddings, Caring: A Feminine Approach to Ethics and Moral Education (Berkeley: University of California Press, 1984). 14. Francesca M. Cancian and Stacey J. Oliker, Caring and Gender (Walnut Creek, CA: AltaMira, 2000). 15. Janet Cotterill, ‘Mugshots and Motherhood: The Media Semiotics of Vilification in Child Abduction Cases’, International Journal for the Semiotics of Law 24 (2011), pp. 447–70; and Bronwyn Naylor, ‘The “Bad Mother” in Media and Legal Texts’, Social Semiotics 11 (2001), pp. 155–76. 16. David M. Smith, ‘How Far Should We Care?’, Progress in Human Geography 22 (1998), pp. 15–38. 17. Nel Noddings, Starting at Home: Caring and Social Policy (Berkeley: University of California Press, 2002). 18. Joan Tronto, Moral Boundaries: A Political Argument for an Ethic of Care (New York: Routledge, 1993). 19. Marilyn F. Friedman, What are Friends for? Feminist Perspectives on Personal Relationships and Moral Theory (Ithaca, NY: Cornell University Press, 1993), p. 147. 20. Victoria Lawson, ‘Instead of Radical Geography, How about Caring Geography?’, Antipode 41 (2009), pp. 210–13 (p. 210). 21. Ibid.; Boff, Essential Care. 22. Dr Who: New Earth (Series 2, Episode 1), television, James Hawes. London: BBC, 15 April 2002. 23. The Island, film, Michael Bay. USA: Dreamworks, 2005. 24. Kazuo Ishiguro, Never Let Me Go (London: Faber and Faber, 2005). 25. William Viney, ‘Getting the Measure of Twins’, in this volume, pp. 104–19. 26. BBC, ‘Sellafield Body Parts Families Given Government Apology’, [16 November 2010]; Steve Dewar and Paula Boddington, ‘Returning to the Alder Hey Report and its Reporting: Addressing Confusions and Improving Inquiries’, Journal of Medical Ethics 30 (2004), pp. 463–9. 27. Anne Whitehead, ‘Writing with Care: Kazuo Ishiguro’s Never Let Me Go’, Contemporary Literature 52 (2011), pp. 54–83. 28. Ninni Holmqvist, The Unit, trans. Marlaine Delargy (Oxford: One World, [2006] 2008). 29. Margaret Atwood, ‘Never Let Me Go by Kazuo Ishiguro’, in Atwood, In Other Worlds: SF and the Human Imagination (London: Virago, 2011), pp. 168–73. 30. Ishiguro, Never Let Me Go, pp. 248–9. 31. Lauraine Snelling, One Perfect Day (New York: FaithWords, 2008); and Jill Wolfson, Cold Hands, Warm Heart (London: Walker Books, 2011). 32. All About My Mother (Todo Sobre mi Madre), film, Pedro Almodóvar. USA: Sony Pictures, 1999. 33. Janet Maslin, ‘All About My Mother (1999), Film Festival Review; Buoyed by the Strangeness of Kinship’, New York Times (24 September 1999) (accessed 14 July 2015). 34. Ibid. 35. Fredrik Svenaeus, ‘The Body as Gift, Resource or Commodity? Heidegger and the Ethics of Organ Transplantation’, Bioethical Inquiry 7 (2010), pp. 163–72. 36. Ben Saunders, ‘Opt Out Organ Donation without Presumptions’, Journal of Medical Ethics 38 (2012), pp. 69–72.

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37. Margaret Lock, ‘On Making up the Good-as-dead in a Utilitarian World’, in Sarah Franklin and Margaret Lock (eds), Remaking Life and Death (Oxford: James Currey, 2003), pp. 165–92. 38. Donna Gordon Blankinship, ‘Facebook Helps Match Kidney Donors and Recipients’, Huffington Post (3 February 2012) (accessed 14 July 2015). 39. Seven Pounds, film, Gabriele Muccino. USA: Columbia, 2008. 40. Barbara Ehrenreich, Smile or Die (London: Granta, 2010). 41. Scheper-Hughes, ‘Keeping an Eye on the Global Traffic in Human Organs’. 42. World Health Organisation, WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation (Geneva: WHO, 2010) (accessed 14 July 2015). 43. Lisa Guenther, ‘On Pain of Death: The “Grotesque Sovereignty” of the US Death Penalty’, in this volume, pp. 395–410. 44. Frederike Ambagtsheer, Damian Zaitch and Willem Weimar, ‘The Battle for Human Organs: Organ Trafficking and Transplant Tourism in a Global Context’, Global Crime 14 (2013), pp. 1–26. 45. Mark J. Cherry, Kidney for Sale by Owner (Washington: Georgetown University Press, 2005); and James Stacey Taylor, Stakes and Kidneys: Why Markets in Human Body Parts are Morally Imperative (Aldershot: Ashgate Press, 2005). 46. The Economist, ‘Psst, Wanna Buy a Kidney: Governments Should Let People Trade Kidneys, not Convict them for it’, The Economist 8 (November 2006) (accessed 14 July 2015). 47. Kimberly Leonard, ‘Exploring the Gray Area in Organ Trafficking: Interview with Ric Esther Bienstock, Director of “Tales from the Organ Trade” ’, US News and World Report: Health (11 November 2013) (accessed 14 July 2015). 48. Bronwyn Parry, ‘Narratives of Neoliberalism: Clinical Labour in Context’, Medical Humanities (2015, forthcoming). 49. Sarah Atkinson, ‘Scales of Care and Responsibility: Debating the Surgically Globalised Body’, Social and Cultural Geography 12 (2011), pp. 623–37. 50. Véronique Campion-Vincent, ‘Organ Theft Narratives’, Western Folklore 56 (1997), pp. 1–37 (p. 1). 51. Véronique Campion-Vincent and Nancy Scheper-Hughes, ‘On Organ Theft Narratives’, Current Anthropology 42 (2001), pp. 555–8 (p. 555). 52. Nancy Scheper-Hughes, ‘Min(d)ing the Body: On the Trail of Organ-stealing Rumours’, in Jeremy McClancy (ed.), Exotic No More: Anthropology on the Front Lines (Chicago: University of Chicago Press, 2002), pp. 31–63; and Nancy Scheper-Hughes, ‘The Ends of the Body: Commodity Fetishism and the Global Traffic in Organs’, SAIS Review 22 (2002), pp. 61–80. 53. Turistas (Paradise Lost), film, John Stockwell. USA: Fox, 2006. 54. Viney, ‘Getting the Measure of Twins’.

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36 AFTERWORD: HEALTH, CARE, CITIZENS Stuart Murray

‘

are’ is a shifting, plural word when used in the context of discussions of health. It suggests attention and compassion when articulated as a verb, but has overtures of regulation and control when used as a noun – to be ‘in care’ is usually not unproblematic. Two chapters in this section – those by Sarah Atkinson and Lucy Burke – speak specifically to the complexities of this idea. As Atkinson makes clear in her chapter, care invokes questions of resource just as much as it outlines interpersonal relationships; it presents what she terms ‘dilemmas, paradoxes and challenges’ when conceived of as a totality and, especially in global contexts, suggests entangled modes of time and space. In our contemporary biocapital transnational health economy, some people are cared for and others not, and Atkinson’s subtle unpicking of the dynamics of ‘caring for’, ‘caring about’, ‘non-caring’ and ‘uncare’ in relation to organ transplant technologies addresses with great clarity the ways in which ‘health citizenship’ is a highly unstable concept, one extended – under specific conditions – to certain individuals but denied to others. What Melinda Cooper has termed ‘life as surplus’ is a consequence of that element of care that in fact becomes ‘uncare’, producing ‘uncitizens’ of a health world that is, in truth, only available to those who can afford to purchase it.1 Atkinson’s chapter points to enormous complexities in the configuration of the notion of health citizenship. Her analysis touches upon fiction and other literature, film, ethics, medical tourism, posthuman conceptions of embodiment, and theories of globalisation – just to name some of the topics covered. In terms of academic or critical disciplines, she sets anthropology next to literary/cultural studies and philosophies of emotion alongside global economics, in a method that exemplifies what this volume as a whole adumbrates as critical medical humanities. Burke’s chapter is similarly engaged. She also thinks through a critical idea of ‘not-caring’, here seen in the tension between a private/individual conception of ‘care’ set against a state/legal/governmental/interventionist model, and in the space created by the interplay of literary narrative and social/political dimensions of care practice and policy. Connecting the representation of violence with the systemic breakdown of care provision, Burke outlines how the ‘current climate of care’ produces the same kinds of ‘non-citizen’ we see in Atkinson’s more global view. In each, health (as resource) is denied to those individuals whose health (in terms of personal wellbeing) is not recognised in the first place. What is so striking about these complexities is not that the processes they contain are in any way exceptional, but rather that all the chapters in this section display the

C

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ubiquity of such effects and, consequently, of the cultural, social and critical interweaving through which they are expressed. What both Atkinson and Burke’s chapters mobilise, then, are highly subtle and nuanced methods of reading, but the issues they address are, crucially, everyday. Reading across the various locations the writing in this section visits – from the Canadian Arctic and the South African AIDS epidemic in Rosemary Jolly’s account of health rights; to Ian Sabroe and Phil Withington’s exploration of ideas of ‘counsel’ and communication from the sixteenth century to the present; or Anna Harpin’s analysis of ‘expressive cultural life’ found in the theatrical productions that took place in Broadmoor – is to find such ordinary complexities at every turn. Withington and Sabroe, for example, are essentially addressing issues of dialogue that take place in physicians’ consulting rooms every hour of every day, while Harpin deliberately documents what she terms the ‘quieter, unsensational’ aspects of Broadmoor, precisely to offset its reputation as an institution made notorious through processes of spectacle that characterise it as a particular space of ‘criminal madness’. To think of such representations in terms of an idea of ‘citizenship’ offers a unique point of entry into discussions of health. The ‘criminally insane’ were, of course, possibly the most extreme examples of those individuals denied entry to the full range of subject positions that being a citizen in theory conveys. As Harpin acknowledges in her chapter, citizenship is a fraught idea in a setting where ‘one can be forcibly treated and denied the right to vote.’ But she also notes that ‘asylum voices are not silent.’ Denied access to what might appear as the standard forms of citizenry, in terms of state- or institution-sanctioned legitimacy, the voices of the asylum engage in various forms of performativity, part of what Harpin terms the ‘cultural ephemera’ of Broadmoor. Such cultural expression over the 153 years of the hospital’s history transformed the space of the institution, reconfiguring notions of confinement and creating a theatricality that, in Harpin’s words, challenged ideas that the performances were only a ‘coercive pantomime of citizenship and civility’. Through such activities, Broadmoor’s residents reclaimed an idea of citizenship that now became located in the meeting point between written story and visual performance, often mobilising ideas of embodiment and agency. That this was ‘unsensational’ stresses an everyday sense of language and presentation, aspects of a trajectory of storytelling that many deem central to the experience of health. It is no huge leap to go from Harpin’s nineteenth-century specifics to a contemporary world of vloggers and social media, and to see how narrative is often at the heart of the expression of health citizenship. Narrative medicine is, of course, a vital foundational part of critical medical humanities. The pioneering work of Susan Sontag, Arthur Frank and Arthur Kleinman laid a basis for a tradition of academically inflected studies that sought to recuperate, in particular, the patient story. If ‘Medicine’ (capital M) stands for the power of the clinical encounter and assessment, and the authority of diagnosis and treatment, then the articulation of the experience of such processes maps out a path by which the patient might reclaim the meaning of being unwell. For Rita Charon, a champion of narrative medicine approaches, the need to ‘tell one’s life’ is matched by the clinician’s responsibility to ‘listen for stories’, a holistic loop that binds doctor and patient

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into a mutual ethical negotiation that results in an escape from the domination of ill health.2 ‘Honoring the stories of illness’, as Charon terms it in the subtitle to her 2006 book Narrative Medicine, is a powerful investment in the individual narratives of the sick, but Brian Hurwitz and Victoria Bates’s chapter here gives the historical detail that shows the extent to which Charon’s often emotional phrasing actually employs complex variables of how narrative works. Narrative, they show, is bound up in ideas of ‘configuring and “figuring-out” ’, but also competency and interaction; it is as much about ethnography and psychology as it is about ideas of literary ‘reading’ and is, they assert, ‘symbolic in recognising the human at the centre of healthcare encounters’. The chapters in this section both tell stories (of Broadmoor, for example) and use texts to explore the cultural materiality of health and medicine, and in so doing they continue that ongoing process (well mapped out in critical medical humanities work) of making the engagement of narrative and health more complex. This much being true, it still might be the case that a stress on the power of narrative to ‘do good’, especially for individual patients, masks the ways in which biomedical power actually works. The contemporary proliferation of personalised health stories, across all sorts of platforms (from acclaimed published memoir to YouTube confession), should not detract from the need for continuing critical investigations into the business of health and its ever-increasing ability to create what the actual parameters of health are, regardless of the individual experience. Arguably, it is an assessment of this particular kind of (non-)care and erasure of citizenship that this section lacks, although it is hinted at across different chapters (especially in Atkinson’s examination of transplant technology). The interplay between biotechnology and capitalism and the production of health markets, the creation of what Nikolas Rose has elegantly termed ‘the politics of life itself’, suggest the existence of spaces in which individuals can exercise choice with regard to their healthcare.3 Increasingly, however, this notion of choice appears illusory, especially in non-Western contexts, where the economics of health provision drive the very conception of what a healthy body or mind might be. As such, how are patient stories ‘honoured’ when those patients are fundamentally seen in terms of consumption and demand? Where are ‘care’ and ‘citizenship’ located (if anywhere) in such formations? Hurwitz and Bates’s confidence in placing ‘the human at the centre of healthcare’ might be deemed more fragile, the more we unpick the workings of such systems. It is, though, still the work of a future critical medical humanities to perform such unpickings. Those versed in the critical mechanics of biopolitics have much to offer such work, as do those who can investigate cross-cultural health contexts. It is a running theme throughout this Companion as a whole that critical medical humanities needs to establish itself as a discipline and critical method that embrace the global nature of health and medical effects, and this is as true of the topics covered in this section as elsewhere. From gender to race, and even including the early 1980s formations of a discipline as obviously global as postcolonial studies, critical disciplines have often struggled to do more than pay lip service to the material reality and situated experiences of non-Euro-American locations. A fully global sense of a critical medical humanities practice requires more than the

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simple extension of Western working methods to other locations; it needs to be properly grounded in the specificities of the ways in which health citizenship becomes actual for those whose wellbeing involves concepts that may well be radically different from those practised in Europe or North America. Transnational patterns of migration, whether connected to the movement of labour or the forced and often desperate journeys of those who have no real citizenship (health or otherwise) of any kind,4 dominate global markets, and public health systems and the practices of reading that accompany them will not be fit for purpose unless they develop the capacity to navigate the differences such movement brings. Hannah Bradby’s chapter in this section addresses this topic directly, working with an idea of ‘medical mobility’ to explore questions of skills, knowledge and training – and how these are modelled and (mis)understood within health organisations – in an argument that calls for a revision of inflexible biomedical definitions of the ‘cultures’ of healthcare. Misunderstanding global contexts, Bradby shows, will have important knock-on effects for the ‘human, legal and policy dimensions’ of health services. By way of contrast, comprehending that migrant professionals (and we might extend this to migrant patients as well) are themselves agents – ‘subjects in their own right’, as Bradby says – not only will expand current understandings of what constitutes health, but also can create prospects for greater efficiencies as well. In Rosemary J. Jolly’s chapter, the different forms that health takes in specific cultural locations drive an argument for the recognition of diversity. In indigenous cultures in Canada (and the same is true of many other global populations) health is conceived of as something that is often defined at a communal, rather than an individual, level. A subject’s personal wellbeing may well be impossible to separate fully from the health of the collective in which she or he lives. Equally, Jolly’s unpacking of the multiple meanings that come with a diagnosis of HIV in South Africa show the importance of the collective in determining the ways in which such clinical labelling actually works in specific locations outside of the main biomedical patterns of logic. In both cases, Jolly shows that what might seem to be questions of choice – to seek treatment or not, for example – are in fact bound up with highly complex narratives of communal perception and judgement. What might seem an obvious course of action to a clinician may well pose multiple problems when viewed from within different ideas of that which constitutes ‘health’. As with Bradby, Jolly’s critical method stresses the benefits of what a critical medical humanities can do for the appreciation of global contexts, though it is worth stressing that there is no shortcut to such knowledge; it requires detailed work, across disciplinary boundaries, that reaches out to other ways of knowing as it creates productive dialogues with them. Again, both chapters are also about the vexed topic of citizenry, and who is allowed entry to (and conversely, who fall through the gaps created by) the policed bioregimes of healthcare in our neoliberal present. Though they are not specifically about an idea of care, they repeat the kinds of complexities central to Atkinson’s and Burke’s chapters. It is provocative to suggest that the kinds of difference and concomitant call for a greater critical flexibility found in the chapters in this section can be thought of as

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‘an argument against competence’. But Rebecca Hester’s arresting phrase, and the arguments it mobilises, work in terms of a critique of what she terms ‘long-standing hierarchies in medicine’. Such hierarchies are especially prevalent, Hester notes, in asserting patterns of authority and knowledge about the other (typically a health user, but also the environment from which she or he might come). For Hester, the cultural competencies that are possible through learning ‘should be in the service of recognising ignorance and uncertainty in the face of alterity rather than ownership, appropriation and manipulation’. Such recognition of alterity is itself a door-opening moment, and a move to admit to limitations, as opposed to the natural assumption of superiority, and it suggests a reoriented idea of authority in health contexts, but the chapters in this section produce another version of the ‘against competence’ argument, one that expands from Hester’s focus on cultural competencies to include ideas of process and method. If competency can be thought of in terms of a sense of trajectory – the movement from scientific hypothesis to testing programme to product in a biomedical example, say – then the kinds of counter- and supplementary arguments that make up the workings of a critical medical humanities here suggest alternatives to orthodoxies of knowing. While we all might feel we know what we mean when we say that we want health practitioners to be ‘competent’, an interrogation of the values that the term implicitly appears to hold can be highly fruitful in achieving greater clarity as to what exactly is at stake in this kind of assertion. Health lives may be ‘liminal’, for example (to cite Susan Merrill Squier’s conception), but that liminality may suggest both a precarious marginal zone of citizenship and a productive space from which to address and critique the ongoing development of biomedical technologies.5 The chapters in this section all attend to the provocations, and the calls for clarity, that a critical medical humanities approach brings to the idea of health citizenship. Across the range of the detail they offer it is precisely the messy slippages, the productive entanglements, knotted histories and the value of the tangential approach that draw their workings together, despite the range of topics. They stress not only the multiple workings of narrative and story, whether personal, social, national, institutional or fictional, but also what we might term the other cultural material of health: artefacts of the visual; the necessary imprecision of ethical arguments; a contested acceptance of media-driven conceptions of popular science; the power of the biomedical corporation; that which is both found and lost in conversation and language. What the work here shows time and again is the need not just to accept the open and flexible nature of critical humanities methodologies (often precisely that which is deemed problematic by more clinical medical approaches), but rather the real necessity of making such methodologies central to medical humanities practice. What Jolly here calls ‘discipline inventiveness’ is not simply the advocacy of a ‘soft’ humanities approach, in contradistinction to the ‘hard’ workings of clinical science or the algorithms working with big data; it is, rather, evidence of a core commitment to a working practice that names, with precision, many of the elements central to the concept of care and the outline of healthy citizens. Any critical approach that neglects to take such elements into consideration, or reduces them to the status of outlying ‘add-ons’, fails to recognise the full

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meaning of health and medicine. At its best, and as seen in the material contained in this section, critical medical humanities offers an enormous opportunity to name the processes that define crucial aspects of our contemporary present.

Notes 1. See Melinda Cooper, Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era (Seattle: University of Washington Press, 2008); and Kaushik Sunder Rajan, The Constitution of Postgenomic Life (Durham, NC: Duke University Press, 2006). 2. Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford: Oxford University Press, 2006), pp. 65–6. 3. Nikolas Rose, The Politics of Life Itself (Princeton: Princeton University Press, 2007). 4. See Giorgio Agamben, Homo Sacer: Sovereign Power and Bare Life (Stanford: Stanford University Press, [1995] 1998) and State of Exception (Chicago and London: Chicago University Press, [2003] 2005). 5. Susan Merrill Squier, Liminal Lives: Imagining the Human at the Frontiers of Biomedicine (Durham, NC: Duke University Press, 2004).

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NOTES ON CONTRIBUTORS General Editors Anne Whitehead is Senior Lecturer in Modern and Contemporary Literature at Newcastle University (UK). She is the author of Trauma Fiction (Edinburgh University Press, 2004) and Memory: New Critical Idiom (Routledge, 2008), and has co-edited Theories of Memory: A Reader (Edinburgh University Press, 2007) and a special issue of Feminist Theory on feminism and affect (2012). Her articles on medical humanities have appeared in leading international journals, including Modern Fiction Studies and Contemporary Literature. She is currently completing a monograph contracted to Edinburgh University Press, Medicine and Empathy in Contemporary British Fiction. Angela Woods is Senior Lecturer in Medical Humanities at Durham University (UK) and Co-Director of Hearing the Voice, a large interdisciplinary research project on voice-hearing (auditory verbal hallucination) supported by the Wellcome Trust (2012–20). An interdisciplinary medical humanities researcher, Angela works at the intersection of literary studies, cultural theory and philosophy. Her first book, The Sublime Object of Psychiatry: Schizophrenia in Clinical and Cultural Theory, was published in 2011 by Oxford University Press, and she has published in leading medical humanities and mental health journals, including Schizophrenia Bulletin, Journal of Mental Health and The Lancet Psychiatry. Angela is Deputy Director of the Durham Centre for Medical Humanities and Associate Editor of the BMJ’s Medical Humanities Journal. For more details of recent publications, see

Associate Editors Sarah Atkinson is Professor of Geography and Medical Humanities at Durham University (UK) and Associate Director of the Durham Centre for Medical Humanities. She is currently serving as the Deputy Head of the Faculty for Social Science and Medicine with responsibility for research operations. Her academic career journeyed through anthropology, nutrition and public health before settling in geography and medical humanities. Her research is characterised by interdisciplinary encounters through which to tease out and interrogate the assumptions underlying mainstream health-related policies and practices, including the interpretation and practice of wellbeing and the understandings and constraints of care and responsibility. She coordinates Durham’s involvement with the Economic and Social Research Council (ESRC) What Works Centre for Wellbeing evidence programme on communities and served on the steering group for the World Health Organisation’s workshop on Cultural

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Determinants of Wellbeing at the Regional Office for Europe. Publications include Wellbeing and Place (Atkinson, Fuller and Painter, eds; Ashgate, 2012). Jane Macnaughton is Professor of Medical Humanities at Durham University (UK) and Co-director of the University’s Centre for Medical Humanities (CMH). She became Dean of Undergraduate Medicine at Durham in 2014 and is an Honorary Consultant in Obstetrics and Gynaecology at the University Hospital of North Durham. Her books include Clinical Judgement (Oxford University Press, 2000, with Robin Downie), Madness and Creativity in Literature and Culture (Palgrave, 2005, with Corinne Saunders) and The Body and the Arts (Palgrave, 2009, with Corinne Saunders and Ulrika Maude). Recently, her work has turned to engagement in critical public health, especially in the field of smoking research. This has led to an interest in the phenomenology of breathing and breathlessness, which is the focus of her Wellcome Trust Senior Investigator Award in Medical Humanities, held jointly with Havi Carel at Bristol. Jennifer Richards is Professor of Early Modern Literature and Culture in the School of English Literature, Language and Linguistics at Newcastle University (UK), and Chair of the English Association’s Higher Education Committee. She specialises in Renaissance English Literature and her work intersects with the fields of the history of rhetoric, the history of reading and the medical humanities. With Richard Wistreich she led the Arts and Humanities Research Council (AHRC)funded Research Network ‘Voices and Books 1500-1800’ (2014–15), and was a recipient of a Leverhulme Major Research Fellowship (2013–15) to support the research for her new monograph, ‘Shared Reading in the English Renaissance’. Her books include Rhetoric and Courtliness in Early Modern Literature (Cambridge University Press, 2003, 2007) and Rhetoric: A New Critical Idiom (Routledge, 2007). Her essays in the field of the history of medicine/medical humanities have appeared in the Journal of the History of Ideas (2012), Past and Present (2014) and the Bulletin of the History of Medicine (2015). With Joseph Black, Andrew Hadfield and Cathy Shrank, she is a General Editor of A New Critical Edition of the Complete Works of Thomas Nashe (forthcoming, Oxford University Press). She is also the Editor of the international journal Renaissance Studies.

Contributors Rachael Allen’s artwork and research explore the interface between human sciences, medicine, anatomy and arts methodologies, predominantly drawing-based. Her practice stretches across participatory arts, science engagement, practice-led research and medical humanities. Researching as Artist in Residence (AIR) in university anatomy laboratories, she develops methods of integrating arts methodologies into medical education alongside her practice-led research, investigating anatomical material to

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explore the dead body and the implications of embodiment, health, illness and pain in the living body. Her current work is situated within the critical medical humanities, addressing the instrumentalisation of the arts in medical sciences and advocating deeper critical engagement through interdisciplinary collaborations (). Lindsey Andrews is Visiting Scholar of English in the Center for Interdisciplinary Studies in Science and Cultural Theory at Duke University (US). She received her PhD in English and Certificate in Feminist Studies from Duke University in 2013. She is currently working on a book manuscript entitled Experimental Subjects: Minor Empiricisms, American Literature, and the Aesthetics of Science. In it, she draws on black and queer aesthetic and political theory to investigate the shared epistemological problems confronted by non-normative experimentation in science and literature in the twentieth-century US. She has published in such journals as Catalyst: A Journal of Feminism, Theory, and Technoscience, NOVEL: A Forum on Fiction, American Literature and Configurations. Victoria Bates is Lecturer in Modern History at the University of Bristol (UK). She has research interests in the social history of medicine in modern Britain. Her primary research has been on Victorian and Edwardian sexual forensics, on medicine in late twentieth-century popular culture and – most recently – on the so-called ‘humanisation’ of healthcare and medical education. She is the co-editor of Medicine, Health and the Arts (Routledge, 2014) and author of Sexual Forensics in Victorian and Edwardian Britain (Palgrave Macmillan, 2015). Suzannah Biernoff is Senior Lecturer in the Department of History of Art at Birkbeck, University of London (UK). Her research has spanned medieval and modern periods: she is the author of Sight and Embodiment in the Middle Ages (Palgrave Macmillan, 2002), while her recent writing pursues the themes of corporeal history and visual anxiety in the context of First World War Britain. In 2007 she was awarded a Wellcome Trust Research Leave Award for a project on the cultural history of disfigurement. Open Access articles from this project have been published in the journals Visual Culture in Britain, Social History of Medicine and Photographies, and her book, Portraits of Violence: War and the Aesthetics of Disfigurement, is due out with the University of Michigan Press in 2016. Hannah Bradby is Professor at the Sociology Department, Uppsala University (Sweden), where she is researching the concept of Welfare Bricolage as part of a comparative European project. Her latest book is Medicine, Health and Society: A Critical Sociology (Sage, 2012). She edits the journal Ethnicity and Health and blogs at Lucy Burke is Principal Lecturer in English in the Department of English at Manchester Metropolitan University (MMU, UK) and an Associate Fellow of the Critical Institute.

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Her research in the fields of medical humanities, cultural disability studies and critical and cultural theory explores cultural representations of dementia and disability and she has published widely in these areas. She is on the editorial board of the Journal of Literary and Cultural Disability Studies and she has also worked with broadcasters, film-makers, artists and arts practitioners on disability- and dementia-related projects, including the first UK-wide disability film festival, The Resistance symposium, Bedding Out by the artist and activist Liz Crow, and the ‘Human Trouble’ series for Humanities in Public at MMU. Felicity Callard is Reader in Social Science for Medical Humanities in the Department of Geography and the Centre for Medical Humanities at Durham University (UK). Her research interests stretch broadly across twentieth- and twenty-first-century histories of psychiatry, psychoanalysis and cognitive neuroscience. She is Director of Hubbub, the first residency of The Hub at Wellcome Collection, which is conducting interdisciplinary experiments on rest with over forty collaborators from the neurosciences, social sciences, humanities and the arts. She is also Editor-in-Chief of the History of the Human Sciences journal. Havi Carel is Professor of Philosophy at the University of Bristol (UK). She was recently awarded a Senior Investigator Award by the Wellcome Trust, for a five-year project entitled ‘Life of Breath’ (with Jane Macnaughton, Durham University). Her latest monograph, Phenomenology of Illness, will be published by Oxford University Press in 2016. She is the author of Illness (Routledge, 2008, 2013), shortlisted for the Wellcome Trust Book Prize, and of Life and Death in Freud and Heidegger (Rodopi, 2006). In 2009–11 she led an AHRC-funded project on the concepts of health, illness and disease. In 2011–12 she was awarded a Leverhulme Fellowship. In 2012–13 she held a British Academy Mid-Career Fellowship. Annamaria Carusi is Reader in Medical Humanities at the University of Sheffield (UK). She is co-editor of Visualization in the Age of Computerization (Routledge, 2014) and has published extensively on imaging and visualisation in science, and on computational modelling and simulation in systems biology. She works very closely with research groups in computational medicine, experimenting with new modes of interaction between humanities and medical science and practice. Jonathan Cole is Consultant in Clinical Neurophysiology at Poole Hospital and Professor at the University of Bournemouth (UK). Educated at the University of Oxford and the Middlesex Hospital Medical School, in the 1970s, as a medical student he spent his elective in New York with Oliver Sacks. He is current Secretary of the European Chapter of the International Federation for Clinical Neurophysiology. He has published over 100 papers in empirical neuroscience and written four single-author books on the first-person experience of neurological impairment. He met Shaun Gallagher over twenty years ago and they have collaborated on several papers.

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Charlotte Cooper is a psychotherapist, para-academic and cultural worker living in East London (UK). Her background is in punk and DIY culture, feminism, community journalism, messing around online and in queer life. She is currently getting ready to publish her latest book, Fat Activism: A Radical Social Movement. Find out more at

Luna Dolezal is Irish Research Council/Marie Curie Research Postdoctoral Fellow located in the Department of Philosophy, Durham University (UK). Her current research project, entitled The Future of the Body: Phenomenology, Medicine and the Neoliberal Subject, explores the phenomenology and politics of emerging biotechnologies. Luna’s work is primarily in the areas of phenomenology, existential philosophy, embodiment theory, medical humanities and philosophy of medicine. Her publications include The Body and Shame: Phenomenology, Feminism and the Socially Shaped Subject (Lexington Books, 2015), Body/Self/Other: The Phenomenology of Social Encounters, with Danielle Petherbridge (SUNY Press, forthcoming), and several journal articles in publications such as Hypatia, Human Technology, Literature and Medicine and Sartre Studies International. Bethan Evans is an academic geographer and scholar–activist. She is currently Senior Lecturer in Geography at the University of Liverpool (UK) and has previously worked in Geography and Medical Humanities at Durham University and Manchester Metropolitan University. Her research engages with critical theory (particularly feminist, poststructural and queer theory) and with activist work to challenge simplistic understandings of health and wellbeing, particularly in relation to fat. Martyn Evans joined Durham University (UK) in 2002, as Professor of Humanities in Medicine. In 2008 he was appointed Principal of Trevelyan College. His doctoral thesis in philosophy of medicine was published as Listening to Music (Macmillan, 1990). He was founding joint editor of the Medical Humanities editions of the Journal of Medical Ethics, from 2000 to 2008. From 2008 to 2014 he was co-Director of the Durham Centre for Medical Humanities. In 2005 he was made an honorary Fellow of the Royal College of General Practitioners. His research interests concern philosophical questions in music and medicine, and the philosophy of wonder. Des Fitzgerald is Lecturer in Sociology at the School of Social Sciences, Cardiff University (UK), and a collaborator at Hubbub, the first residency of The Hub at Wellcome Collection. A sociologist with long-standing interests in neuroscience, psychology, and the relationship of the biological to the social, he has active research projects on the autism spectrum, on the historical psychology of the restless city, and on logics of collaboration in the contemporary academy. Shaun Gallagher is the Lillian and Morrie Moss Professor of Excellence at the University of Memphis (US). His areas of research include phenomenology and the cognitive

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sciences, especially topics related to embodiment, self, agency and intersubjectivity, hermeneutics, and the philosophy of time. He has a secondary research appointment at the University of Wollongong, Australia, and is Honorary Professor of Philosophy at both the University of Copenhagen (Denmark) and Durham University (UK), and Honorary Professor of Health Sciences at the University of Tromsø, Norway. He has held visiting positions at Cambridge, Copenhagen, Paris, Lyon and Berlin. Peter Garratt is Lecturer in the Department of English at Durham University (UK). He has research interests in Victorian literature and culture, particularly the work of George Eliot, and in non-fictional prose, intellectual history and the medical and cognitive humanities. His first book, Victorian Empiricism (Fairleigh Dickinson University Press, 2010), examines scientific epistemology in nineteenth-century philosophical, psychological and literary writing, and he is editor of The Cognitive Humanities: Embodied Mind in Literature and Culture (Palgrave Macmillan, 2016). Lisa Guenther is the author of Solitary Confinement: Social Death and its Afterlives (Minnesota University Press, 2013) and The Gift of the Other: Levinas and the Politics of Reproduction (SUNY, 2006), as well as journal articles in the areas of phenomenology, feminist philosophy and social theory. She is Associate Professor of Philosophy at Vanderbilt University (US), and she facilitates a weekly philosophy discussion group with prisoners on death row at Riverbend Maximum Security Institution in Nashville, Tennessee. Anna Harpin is Associate Professor of Theatre and Performance at the University of Warwick (UK). Her primary area of research is the cultural history of madness and trauma in Britain and North America. She is currently writing a monograph entitled Disordered: Madness and Cultural Representation and has recently completed an AHRC-funded project examining the history of theatre in psychiatric asylums with Juliet Foster (Cambridge). Recent publications include Performance, Madness, Psychiatry: Isolated Acts (Palgrave Macmillan, 2014) and articles in journals, including Contemporary Theatre Review and Interdisciplinary Science Reviews. She is also an editor of Studies in Theatre and Performance and a theatre director with her company, Idiot Child. David Herman is Professor of the Engaged Humanities in the Department of English Studies at Durham University (UK). The author of Storytelling and the Sciences of Mind, Basic Elements of Narrative (MIT Press, 2013) and other books, and guest editor of the autumn 2014 special issue of Modern Fiction Studies on ‘Animal Worlds in Modern Fiction’, he is currently exploring ways to connect ideas from narrative studies with work in a range of fields concerned with animals and human–animal relationships. Rebecca Hester is Assistant Professor in the Department of Science and Technology in Society at Virginia Polytechnic Institute and State University in Blacksburg, Virginia (US). Her research focuses on the cultures and politics of biomedicine and science,

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as well as on the politics and ethics of scientific knowledge production. Her current research is focused on molecular politics and the production of ‘biological danger’ in the War on Terror. Brian Hurwitz trained as a family doctor in central London, where he practised as a general practitioner for thirty years. Since 2002 he has been Professor of Medicine and the Arts at King’s College London (UK), where he directs the Centre for the Humanities and Health, which is funded by the Wellcome Trust. The Centre is a multi-disciplinary unit offering research training at masters, PhD, MD and postdoctoral levels. Based in the Department of English at King’s, Brian has research interests that include narrative studies in relation to medical practice, ethics, law and the logic and literary shape of clinical case reports. Prior to his current position, he was Professor of Primary Health Care and General Practice at Imperial College London (UK). Rosemary J. Jolly is Weiss Chair of the Humanities in Literature and Human Rights at the Pennsylvania State University (US), and Professor of Comparative Literature, Bioethics, English, African Studies and Women’s, Gender and Sexuality Studies. Past work includes extensive research on HIV/AIDS and gender-based violence, the co-founding of Rape Crisis Centres in rural South Africa, and a monograph, Cultured Violence: Narrative, Violence and Engendering Human Rights in Contemporary South Africa (Liverpool University Press, 2010). She is currently working on a monograph entitled Effluent Communities, exploring critiques of human rights offered by creative writing by and on communities commonly regarded as abject. Nev Jones is a mental health services researcher and advocate, currently based at Stanford University (US) as a postdoctoral fellow. Her interests include the politics of service-user ‘voice’, systems change in mental health, and the sociocultural determinants of disability and recovery. Edward Juler is a Lecturer in Art History at the University of Newcastle (UK). Prior to this he held a Wellcome Trust Research Fellowship at the University of Edinburgh. He is the author of Grown but not Made: British Modernist Sculpture and the New Biology (Manchester University Press, 2015). Lauren Kassell is Reader in History of Science and Medicine in the Department of History and Philosophy of Science and Fellow of Pembroke College, Cambridge (UK). She directs the Casebooks Project and, with Nick Hopwood and Rebecca Flemming, is editing Reproduction from Antiquity to the Present Day, forthcoming with Cambridge University Press. Cynthia Klestinec is Associate Professor in the Department of English at Miami University, Ohio (US). Her PhD is in Comparative Literature from the University of Chicago. In addition to articles on early medicine, she has published a monograph

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on anatomy, Theaters of Anatomy: Students, Teachers, and Traditions of Dissection in Renaissance Venice (The Johns Hopkins University Press, 2011), which focuses on the pedagogical, institutional and cultural changes that informed the study of anatomy in the post-Vesalian era. Jill Magi is a poet, artist, critic and educator whose research interests include experimental writing, pedagogy, narrative and the body, ecopoetics, textile poetics, and race and experimentalism. Her books include LABOR (Nightboat Books, 2012), SLOT (Ugly Duckling Press, 2011), Cadastral Map (Shearsman, 2011), Threads (Futurepoem, 2007), and the monograph Pageviews/Innervisions: A Textimage Theory and Curriculum (Rattapallax/Moving Furniture Press, 2014). Her essays have been anthologised in The Eco-Language Reader, The Force of What’s Possible: Writers on Accessibility and the Avant-Garde and The Racial Imaginary. Jill’s visual work has been exhibited at Columbia College Chicago, the Textile Arts Center Brooklyn, apexart and the AC Institute gallery. In 2013 she joined the faculty at New York University Abu Dhabi, where she teaches expository writing through the study of textiles, as well as poetry electives. Dana Mahr’s research focuses on the sociology and history of public participation in science and technology. For this purpose she combines methods from the social sciences with historical questions. She works as a postdoctoral researcher in the Swiss National Science Foundation project ‘Rethinking Science and Public Participation’ (University of Geneva, Switzerland). In 2014 she published Citizen Science: Participatory Knowledge Production in the Late 19th and Early 20th Century (Oekem, 2015). In addition, Dana explores the history and sociology of the coproduction of knowledge between patients, families, medical professionals and scientists within emerging biomedical fields and related practices like whole-genome sequencing or direct-to-consumer testing. Besides her position in Geneva, she is Young Fellow at the Centre for Interdisciplinary Research at Bielefeld University and Associate Fellow at the Schleswig–Holstein Cluster of Excellence ‘Inflammation at Interfaces’. Timothy Kelly is a songwriter, mental health counsellor and doctoral student at the University of Iowa (US). His research interests include cultural phenomenology and identity development within states often under the description of psychosis, and the sociocultural contexts of mental health services and advocacy. He is a survivor of the US juvenile justice system, foster care and psychiatric institutions. He is a mental health services user, formally diagnosed with schizoaffective disorder. Jonathan M. Metzl is the Frederick B. Rentschler II Professor of Sociology and Psychiatry, and the Director of the Center for Medicine, Health, and Society, at Vanderbilt University in Nashville, Tennessee (US). He received his MD from the University of Missouri, MA in Humanities/Poetics and Psychiatric internship/ residency from Stanford University, and PhD in American Culture from University

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of Michigan. A 2008 Guggenheim Fellow, Professor Metzl has written extensively for medical, psychiatric and popular publications. His books include The Protest Psychosis/Prozac on the Couch (Beacon Press, 2010) and Against Health: How Health Became the New Morality (New York University Press, 2010). Stuart Murray is Professor of Contemporary Literatures and Film in the School of English at the University of Leeds (UK), where he is also the Director of the interdisciplinary Centre for Medical Humanities. He is the author or editor of eight books, including Representing Autism: Culture, Narrative, Fascination (Liverpool University Press, 2008) and Autism (Routledge, 2011). His current monograph is Disability and the Posthuman, to be published by Liverpool University Press, and he is a co-editor of The Cambridge Companion to Literature and Disability, forthcoming from Cambridge University Press. Jan Eric Olsén is a historian of science associated with the Department of Cultural Sciences, Lund University (Sweden), and Medical Museion, University of Copenhagen (Denmark). He has published articles on the visual and material culture of medicine and was co-curator of the exhibition Split + Splice. Fragments from the Age of Biomedicine (Medical Museion, June 2009 to April 2010), which received the Dibner Award for Excellence in Museum Exhibits 2010. His current research focuses on the history of blindness and the aporetic relation between material objects and archival documents. Christoph Rehmann-Sutter is Professor of Theory and Ethics in the Biosciences at the University of Lübeck (Germany) and Visiting Professor at King’s College London (UK). He studied molecular biology, philosophy and sociology in Basle, Freiburg in Breisgau and Darmstadt. As a bioethicist he has widely published about basic philosophical issues of bioethics, ethics of gene therapy, genomics, transplantation of blood stem cells between siblings, and issues in end-of-life care. Books include Leben beschreiben: Über Handlungszusammenhänge in der Biologie (Konigshausen and Neumann, 1996), Zwischen den Molekülen: Beiträge zur Philosophie der Genetik (Francke, 2005), Genes in Development: Re-Reading the Molecular Paradigm (co-editor; Duke University Press, 2006), Disclosure Dilemmas: Ethics of Genetic Prognosis after the ‘Right to Know/Not to Know’ Debate (co-editor; Ashgate, 2009) and The Human Enhancement Debate and Disability: New Bodies for a Better Life (co-editor; Palgrave Macmillan, 2014). Ian Sabroe is a clinician, biomedical researcher and co-Director of Medical Humanities Sheffield (UK) (). His clinical work is in respiratory disease, particularly caring for people who have severe asthma or the rare lung disease, pulmonary hypertension. His biomedical research work, funded by many national bodies but principally the Medical Research Council, examines mechanisms of inflammation in the lung. He co-founded and co-leads Medical Humanities Sheffield, a large interdisciplinary research centre dedicated to the study of the intersections between medicine and the humanities.

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Laura Salisbury is Senior Lecturer in Medicine and English Literature at the University of Exeter (UK). She has published widely on literary modernism and is currently completing a monograph on modernism and neurological theories of language called Aphasic Modernism: A Revolution of the Word. With Ulrika Maude and Elizabeth Barry, she is co-investigator on the AHRC-funded research network, Modernism, Medicine and the Embodied Mind (2015–16). Corinne Saunders is Professor of Medieval Literature in the Department of English Studies and co-Director of the Centre for Medical Humanities at the University of Durham (UK). She specialises in medieval literature and the history of ideas, with a particular emphasis on medicine, emotions, gender and the body. She is a co-investigator on the interdisciplinary project ‘Hearing the Voice’ and a collaborator on ‘The Life of Breath’, both funded by the Wellcome Trust. Her third monograph, Magic and the Supernatural in Medieval English Romance, was published in 2010 (Boydell and Brewer), and she is currently writing A Concise History of Medieval English Literature. She is also the author of The Forest of Medieval Romance (D. S. Brewer, 1993) and Rape and Ravishment in the Literature of Medieval England (D. S. Brewer, 2001). Her edited books include (with Jane Macnaughton) Madness and Creativity in Literature and Culture (Palgrave Macmillan, 2005) and (with Ulrika Maude and Jane Macnaughton) The Body and the Arts (Palgrave Macmillan, 2009). She is also the English editor of the journal Medium Ævum. Volker Scheid is Professor of East Asian Medicines at the University of Westminster, London (UK). He has published widely on the history of Chinese medicine in the late imperial, modern and contemporary periods, including two monographs, Chinese Medicine in Contemporary China: Plurality and Synthesis (Duke University Press, 2002) and Currents of Tradition in Chinese Medicine, 1626–2006 (Eastland Press, 2007). His work draws on a wide range of perspectives from across the social sciences and humanities seeking, in turn, to utilise East Asian medicines as a resource for engaging with problems of the present. In addition to his academic work, he also practises Chinese medicine in London. Heather Tilley is a Birkbeck Wellcome Trust ISSF Fellow at Birkbeck, University of London (UK), and previous recipient of a British Academy postdoctoral fellowship award. Her research interests are in the relationship between literature, art, the body and the senses in the Victorian period. She has recently completed a book manuscript titled Blindness and Writing: Wordsworth to Gissing. As part of this project on the history of visual disability, she has curated an exhibition at Birkbeck, ‘Touching the Book: Embossed Literature for Blind People in the Nineteenth Century’ (2013), supported by the Heritage Lottery Fund, and a display at the National Portrait Gallery, ‘Facing Blindness: Visual Impairment in the Nineteenth Century’ (2013–14). Her new research focuses on constructions of touch, tactility and the neurological body in Victorian medical and scientific texts, literature and art, and in November 2014 she edited a

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special issue of the online journal 19: Interdisciplinary Studies in the Long Nineteenth Century on the theme of the Victorian tactile imagination. William Viney is Leverhulme Early Career Fellow in the Department of English Studies and the Centre for Medical Humanities, Durham University (UK). He is the author of Waste: A Philosophy of Things (Bloomsbury, 2014; 2015) and a contributor to publications such as Cabinet, Critical Quarterly, Frieze and Textual Practice. Patricia Waugh is Professor of English in the Department of English Studies at Durham University (UK). Her first book was Metafiction: The Theory and Practice of SelfConscious Fiction (Methuen, 1984), and since then she has since written and edited many books and essays on modern fiction, modernism and postmodernism, feminist theory, contemporary literature, and literary and cultural theory. Her recent interests have been in the relations between the arts, sciences and medicine and in interdisciplinary negotiations beyond the two cultures. She is completing a monograph entitled The Fragility of Mind, examining the relationship between literary cultures and texts and theories and philosophies of mind since 1900, and a book with Marc Botha, Critical Transitions: Genealogies of Intellectual Change. Her recent work contributes to a collaborative Leverhulme-funded project at Durham University on ‘Tipping Points’ and a Wellcome Trust-supported project entitled ‘Hearing the Voice’ at Durham University. Richard Wistreich is Professor of Music and Director of Research at the Royal College of Music (UK). His scholarly interest in the history of early modern vocality and its role in the construction of identity stems directly from his own experience as a professional singer specializing in the performance of music primarily from sixteenthand seventeenth-century Europe, and his many years of the teaching of singing, most notably as Professor of Historical Singing and Director of the Institut für Alte Musik at the Staatliche Hochschule für Musik in Trossingen (Germany) from 1991 to 2003. His books include Warrior, Courtier, Singer: Giulio Cesare Brancaccio and the Performance of Identity in the Late Renaissance (Ashgate, 2007) and edited collections of essays about the composer, Claudio Monteverdi (The Cambridge Companion to Monteverdi (Cambridge University Press, 2007) and The Baroque Composers: Claudio Monteverdi (Ashgate, 2011); he is currently co-editor, with Iain Fenlon, of The Cambridge History of Sixteenth Century Music (Cambridge University Press, 2007). His recent work focuses on developing a holistic conception of early modern singing through an understanding of Renaissance anatomy, physiology and physiognomy as they relate to the voice. Jo Winning is Reader in Modern Literature and Critical Theory at Birkbeck, University of London (UK). She has written extensively on illness, language and the clinical encounter, and both her teaching and her research are situated at the interface between critical theory and clinical practice. She is currently working on the monograph The Affect of Illness. She is Director of the Birkbeck Centre for Medical Humanities, as

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well as Course Director of the MA Medical Humanities and MPhil/PhD Medical Humanities programmes at Birkbeck, which are designed for clinicians and healthcare practitioners. Phil Withington is Professor of History at the University of Sheffield and co-Director of Medical Humanities Sheffield (UK). He is currently running a large ESRC/AHRC project on ‘Intoxicants and Early Modernity’ () and is writing a book on the social history of the English Renaissance. Other areas of expertise include the history of semantics and language, popular politics, and urban history. Recent books include Intoxication and Society, edited with Jonathan Herring et al. (Palgrave Macmillan, 2013) and Cultures of Intoxication, edited with Angela McShane (Oxford University Press, 2014).

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INDEX

Page numbers in italics indicate figures. Abject Art: Repulsion and Desire in American Art (exhibition), 179 abjection, 178–82, 231, 356, 362–3, 365–6, 369–70 Abram, David, 304 abuse see sexual abuse; violence Ackerknecht, Erwin, 124, 126 activism disability activism, 234 fat activism, 225–9, 231, 236 and Queer Theory, 232–3 adherence see compliance Adorno, Theodor W., 158 Advancement of Learning (Bacon), 509 advertisements, 166, 167, 175, 181, 597 aesthetics and the body, 310, 317–18 exoticisation, 528–9 Kantian, 430 modernist, 445–6, 449, 451 subjective response, 428–30 ugliness and pain, 166–72, 176–8, 181–2 and Victorian mental disorder, 431–4, 437–9 and Victorian scientific thought, 430–1, 434–6, 439–40 see also art affect and care, 601, 603, 613, 614 and dualism, 346–7 and entanglement, 39–40 and literature, 433–4, 435 mind-body continuum, 412–17, 423 and neuroscience, 300, 301 and visionary experience, 418–19, 422 see also emotions Affordable Care Act (2010), 553 Africa HIV/AIDS, 534–8, 630 medical migration, 491–2, 494–7, 499, 500–2 sub-Saharan, 492 TB, 530 see also South Africa Agamben, Giorgio, 24 Agathe (research participant), 97–8

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agency and animacy, 109–12 and disease, 98–9 and embodiment, 349, 379 and entanglement, 40 and intentionality, 351, 388 and migration, 492, 498–9, 630 and modelling, 58 non-human animals, 470–1, 472 and pain, 165–6 agential realism, 9, 39, 59 Agnes’ Jacket (Hornstein), 578 Aguilera-Hellweg, Max, 197–201 Ahmed, Sara, 233 Ai Siqi, 69, 78 AIDS, 179, 494–5, 534–8 Alaimo, Stacy, 14 Alajouanine, Théophile, 444–5 The Alchemist (Jonson), 209–10 All About My Mother (film), 618 Allen, Rachael, 327, 357–8, 371 The Almost Moon (Sebold), 597–8, 606–7 Alzheimer’s Society, 597; see also dementia American Academy of Asian Studies (AAAS), 74–5 American Medicine (Good), 543–4, 548–9 American Thoracic Society, 299, 301 anatomy and dissection conceptions of, 276 and psychophysiology, 359 Renaissance tradition, 281–8 and touch, 211, 212–16, 221, 330–1 and the visual arts, 186–7, 189–90, 194, 197–204, 199, 200, 201 and voice, 277–8, 280–1, 286–90 The Anatomy Lab (Allen), 190, 192 ‘The Anatomy of the Renaissance Voice’ (Richards and Wistreich), 189–90 The Anatomy of Violence (Raine), 242–3, 250, 252–6 ‘Anger, Art and Medicine’ (Armstrong), 318–19 Animacies (Chen), 109–10, 114, 115 animacy, 109–12, 114–16, 158–9

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index

‘Animal-Assisted Intervention for Autism Spectrum Disorder’ (O’Haire), 468 Animal-Assisted Interventions (AAI), 464–72, 475–6 Animal (Fudge), 465 animals and autistic people, 463–4, 468, 475, 534 biophilia hypothesis, 467 critical theory, 13, 471–2 and disability, 472–3 euthanasia, 398 as healers, 466, 469 selfhood, 465, 470–2, 474, 476 ‘Animals in Therapeutic Education’ (Katcher), 467 anorexia nervosa, 532–3 An Anthropologist on Mars (Sacks), 377, 380 anti-retroviral drugs (ARVs), 534–7 aphasia, 444–7, 449–50, 452, 454–6 ‘Aphasia and Artistic Realization’ (Alajouanine), 444, 445 Aphasia and Kindred Disorders of Speech (Head), 449 Apocalypse (Rosenthal), 179 apothecaries, 511 ‘Aproprioception and Gesture’ (Quaeghebeur et al.), 383 Archer, Margaret S., 91 Aristotle, 170, 282, 304, 474 Armitage, Thomas, 270 Armstrong, David, 123 Armstrong, Rachel, 318–19 Arnott, Robert, 3, 4, 37 art abject art, 178–82, 231, 356, 365 beauty and ugliness, 168–71, 181–2 benefits of, 428–30, 439–40 Bio Arts, 203–4 and the body, 326–8, 365–70 and disability, 234–5, 266 experimental, 158 and the face, 173–4, 176–8 modelling, 50–1, 55–6, 61–2, 157 performance art, 194–5, 233, 310–11, 317–21, 348 theatre in Broadmoor, 578–91, 583, 584, 585 see also aesthetics; modernism; photography; Surrealism; visual arts Artaud, Antonin, 356, 357, 365–72, 366, 367, 368, 370 artisans, 210 The Ashgate Research Companion to Queer Theory (Giffney and O’Rourke), 232 associationism, 265–6 astrology, 122–3, 125, 129, 130 asylums, 579–80, 628; see also Broadmoor Hospital At the Will of the Body (Frank), 568 Atkinson, Paul, 564 Atkinson, Sarah, 225, 604, 627–8 Atwood, Margaret, 611, 617 Auden, Wystan Hugh, 428 auditory hallucinations see voice-hearing Augustine, Saint, 414 Auschwitz, 24, 113, 547 Auschwitz and Afterimages (Chare), 179–80 authenticity, 522–3, 616

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authority, 24–6, 396, 397–8, 400–1, 551–3, 631 autism and animals, 463–9, 474–6, 534 selfhood, 470–1, 473 Autobiography (Mill), 431–4, 439 autoscopy, 367–70, 485 Avicenna, 413 Awakenings (Sacks), 563 Baartman, Sarah ‘Saartjie,’ 547 Bacon, Francis (artist), 180 Bacon, Francis (philosopher), 508–9, 510 The Bad Daughter (Hilden), 598, 607 Bain, Alexander, 263, 434, 437 Balint, Enid, 562 Balint, Michael, 446, 562 Ball, Laura C., 113 Bar-Yosef, Eitan, 263 Barad, Karen, 9, 39, 40–1, 59, 464 Bard, Chantal, 384 Barker, Jason Elvis, 231 Barnes, Barry, 115 Baron-Cohen, Simon, 474–5 Barthes, Roland, 56 Bataille, Georges, 356, 362–3, 364–5, 369 Bate, Sarah, 387 Bates, Victoria, 446, 629 Bateson, Gregory, 74, 77 Bauman, Zygmunt, 603–4 Baze v. Rees (2008), 397, 399, 403 Beauchamp, Tom L., 521 beauty, 166, 168–71, 173–4, 175, 181–2, 530; see also ugliness Bending, Lucy, 165, 175–6 Benjamin, Walter, 592n Benn, J. Williams, 582, 583 Bennett, Jane, 115, 116, 348 Berman, Philippa, 559 Bernard, Claude, 156 Bertalanffy, Ludwig von, 76–7 Bethlem Royal Hospital, 579 Between a Rock and a Hard Place (Cooper), 325–7, 325, 326, 327, 328 ‘Between Two Worlds’ (Peckitt et al.), 388–9 ‘Beyond the Pleasure Principle’ (Freud), 363–4 ‘Beyond the Wounded Story-Teller’ (Woods), 456 Beyond Therapy (President’s Council on Bioethics), 313 bibliotherapy, 428–30, 431, 433–4 ‘The Big Toe’ (Bataille), 362–3, 364 Bilal, Wafaa, 323n biobanks, 89 The Biophilia Hypothesis (ed. Kellert and Wilson), 467 biopolitics, 42, 77–8, 396, 403–4, 533 The Birth of the Clinic (Foucault), 245 The Birthday Party (Pinter), 586 Bishop, Jeffrey, 5 Black and Blue (Hoberman), 546 Bleakley, Alan, 188 blindness as a disability, 260–2 and haptic perception, 262–6 tactile teaching aids, 267–71

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index Blumgart, Herman L., 562–3 body commodification, 315, 618–23 conceptualising, 325, 329, 331 death, 195–6, 202, 349–50 docility, 329–30 embodied thinking, 278, 289–90, 331, 333 habitus, 296–7 hygienism, 360–2, 370 interiority, 193–4, 245–6, 276, 326–7, 357–8, 365–6 malleability, 310–13, 316–21 politicisation and theorisation, 41–2, 123–4, 125–6, 178–9 self-representation, 358–9, 361–2 surgery, 197–201, 197, 198–200 in visual art, 188–92, 194–5 see also anatomy and dissection; embodiment; medical imaging; viscera Body and Will (Maudsley), 439 The Body Emblazoned (Sawday), 276 The Body in Pain (Scarry), 165–6, 180, 448 The Body is a Big Place (Clancy and Pynor), 202–3, 202, 203 Body of Work (Montross), 189 Body Worlds (von Hagens), 186 Boero, Natalie, 230 Bogart, Kathleen Rives, 386 Bolton, Gillie, 37 The Book Named the Governor (Elyot), 512 Book of Changes (anon.), 72, 73–4 The Book of Margery Kempe (Kempe), 420–2 The Book of the Duchess (Chaucer), 416–17 Booth, Sara, 299 Borror, Amy, 395 Bostrom, Nick, 313–14 ‘Boundaries of Humanities’ (Bolton), 37 Bourke, Joanna, 165, 166, 171, 448, 561 Bovey, Shelley, 230 Boyle, Robert, 508 Bradby, Hannah, 630 brain and breathing, 300, 301, 303 influence of affect, 415–17 and mind, 248, 347, 432–3, 434, 436, 438 models, 413 and motor action, 382–3, 385 see also aphasia brain scans see medical imaging Braun, Lundy, 245 breath and breathlessness aware breathers, 303, 304–5 cultural and social aspects, 294–8, 302 perception, 300, 301, 302 and spirituality, 304, 305 treatment options, 299–300 visibility, 298–9, 303, 306–7 and voice, 282 Breath (Roberts), 305, 306 ‘Breathing like a Soldier’ (Lande), 304 Breathing Race into the Machine (Braun), 245 ‘Breathing Space’ research group, 306 Briggs, Brian H. J., 231

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The Broadmoor Chronicle (journal), 579, 586, 587, 593n Broadmoor Hospital cultural ephemera, 578–9 description, 577, 579 dramatherapy, 588–91 moral therapy, 580–1 performances, 582–7, 583, 584, 585, 628 Brody, Howard, 567 Brontë, Charlotte, 435 Brook, Alexis, 332–3 Brown, Jeanne, 406n Bucknill, John, 579 Buddhism, 80, 81 Burdett, Carolyn, 430 Burke, Lucy, 627–8 Bustamante, Antonio, 254 Butler, Judith, 5 Byrne, Patrick, 563 Cage, John, 158 Calder, Andrew J., 386–7 Cameron, David, 599–600, 605, 607 Campbell, Fiona Kumari, 261 Campion-Vincent, Véronique, 622 ‘Can a Fat Woman Call Herself Disabled?’ (Cooper), 235 Canada, 529–30, 532, 538, 630 cancer, 2, 4, 94, 341 Candlin, Fiona, 274n Canguilhem, Georges, 111 capital punishment see death penalty capitalism, 77, 79, 315, 528–9, 545, 629 Capra, Fritjof, 74, 75, 342–3 Capricci medicinali (Fioravanti), 219 Carby, Hazel V., 549 care altruistic, 618–19 and citizenship, 629 definition, 600–1, 613 global scale, 611–12, 615 personal and abstract, 613–14, 619–22, 623 uncare and not-caring, 615–18, 622–3, 627 see also social care Carel, Havi, 303, 391, 453, 457, 462n, 520, 550 carers, 597–8, 602–7 Carers (Equal Opportunities) Act (2004), 602, 603 Carey, John, 428–9, 430, 440, 486 Carpenter, William B., 273n Carruthers, Mary, 425n ‘Case Reports in The Lancet’ (Berman and Horton), 559 casebooks digitising, 120–1, 126–31 history, 121–6 narratives, 559–60, 561–5, 568 Cassell, Eric J., 342 Casserio, Giulio (Casserius), 213, 213, 214, 277, 283–6, 284 The Castel of Helth (Elyot), 282, 512, 515–17 Castiglione, Baldassare, 217 Catcher in the Rye (Salinger), 531 Catts, Oron, 204 Cayman Islands, 500

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index

Celan, Paul, 180 Céline, Louis-Ferdinand, 179 Celsus, Aulus Cornelius, 216 cerebral palsy, 378, 388–9 Chagnon, Napoleon A., 253 Chapman, Jay, 398 Charcot, Jean-Martin, 245 Chare, Nicholas, 179–80 Charles, Prince of Wales, 75 Charon, Rita, 342, 482, 565–6, 628–9 Chaucer, Geoffrey, 414–18, 423 Chen, Mel Y., 109–10, 111, 114, 115 Chevillet, Pierre, 361 Childress, James L., 521 Chinese medicine and dialectics, 69–71 and holism, 70–1, 73–6, 78–9 modernity and tradition, 80–2 and systems biology, 66–7, 71–2, 76–8 and touch, 330–1 Christianity, 172–3, 175–6, 181, 418–22 chronic obstructive pulmonary disease (COPD), 297, 298–9, 300 citizenship, 538, 577, 603, 627–8, 629–30, 631 Clair, Jean, 178 Clancy, Peta, 202–3 Coetzee, John Maxwell, 527 Cohen, Esther, 165, 172 Cohen, William A., 431, 442n Cold Hands, Warm Heart (Wolfson), 618 Cole, Jonathan, 166, 381, 482, 486 Coleman, Allan D., 198 Coleridge, Samuel Taylor, 431–2 Colls, Rachel, 225, 229, 235 colonialism, 493–4, 530–2, 546–9; see also imperialism; postcolonialism Columbus Dispatch (newspaper), 395 commodification, 78, 179, 315, 498, 500–1, 618–23 commodity fetishism, 528–9 communication communicative dissonance, 509 empathy, 517–18 and medical education, 3–4 mutuality and authenticity, 522–4 and pain, 166, 180 technologies, 510 see also language; voice competence and credibility, 550 cultural, 541–3, 545–9, 551–4, 630–1 description, 543–5 narrative, 566, 629 complementary and alternative medicine (CAM), 67, 548, 549 complexity, 154, 158, 159 compliance, 211–12, 218–19, 220–1, 278, 551, 553 comportment, 217–18 computational models, 51–5, 60–1 Conner v. N.C. Council of State (2007), 402 Connor, Steven, 281, 303 Conquergood, Dwight, 543 consciousness checks, 396, 403–5 The Construction of Man (Mabille), 359, 371

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consumer medicine, 315–17, 318–19, 320–1; see also lifestyle medicine Consumption (Patterson), 527, 529–33, 538 Cool, Alison, 108 Cooper, Andrew, 325–7, 325, 326, 327, 328 Cooper, Charlotte, 226, 228, 231, 233, 235, 236 Cooter, Roger, 125–6 Corps étranger (Hatoum), 193–4 cosmetic surgery, 310, 315–18 counsel in early modern English texts, 510, 512–17, 513, 514, 515 modern clinical context, 517–21, 523–4 and paternalism, 521–2 semantic network, 521 counter-culture movement, 74–5, 77 The Courtier (Castiglione), 217 Couser, G. Thomas, 234, 261 Couti l’anatomie (Artaud), 367, 367 Cox, Murray, 588 credibility deficit, 550–1, 552 criminality, 242–3, 250–6, 253, 579, 622; see also violence ‘Crisis in Poetry’ (Mallarmé), 450 The Crisis of European Sciences and Transcendental Phenomenology (Husserl), 92 critical animal studies, 13, 471–2 ‘Critical Medical Humanities’ (Viney et al.), 8 critical theory, 5–6, 8, 56–8, 329, 543 critique, 5, 113–14, 340–3, 345–7, 352 Critique of Judgment (Kant), 157, 430 Critique of Pure Reason (Kant), 340 Croce, Giovanni Andrea della, 217–18 Crohn’s disease, 94–9 Crooke, Helkiah, 278, 280, 286–9, 288, 331 Cross, Simon, 589 Crossley, Nick, 91 cultural competence background, 541–3 and citizenship, 631 and cultural knowledge, 545–9 evaluation, 543–5 and injustice, 549–54 cultural holism, 68, 72–3 cultural identity, 529, 533–8, 549–50, 630 Culture, Medicine and Psychiatry (journal), 549 Currow, David C., 299 cybernetics, 71–2, 77, 78 Dada, 445 Dakin, Paul, 37 Damasio, Antonio, 412 Dames, Nicholas, 442n Darwin, Charles, 163–5, 168 Darwin, Literature, and Victorian Respectability (Dawson), 439 data analysis, 94–5, 121, 126–7, 156–7, 561–2 digitising, 127–31 see also systems biology and biomedicine; technology David Copperfield (Dickens), 435–6 Dawkins, Richard, 253 Dawson, Gowan, 439

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index De Anima (Aristotle), 282 De Anima (Avicenna), 413 De Block, Andreas, 467 De Humani Corporis Fabrica (Vesalius), 212, 214, 277, 278, 281–2 De Poetica (Aristotle), 170 De Visione, Voce, Auditu (Fabricius), 283 De Vocis Auditusque Organis Historia Anatomica (Casserius), 283–6, 284 deafferentation syndrome, 380–6, 390 Death and Man (Artaud), 368 death penalty botched executions, 395–6, 399, 405 consciousness checks, 396, 403–5 human rights, 621 legitimacy, 397–401, 487 medical involvement, 401–3, 483–4 ‘Dejection’ (Coleridge), 431, 432 dementia and abuse, 596–8, 605–7 incurability, 604 market solutions, 599–600, 603–4 Deng Xiaoping, 71, 78 Denis, Simone, 304 Denno, Deborah, 402–3 Derrida, Jacques, 57, 372 Desbonnet, Edmond, 361 Descartes, René, 346 Dezieck, Laurel, 530 dialectical materialism, 69–72 Diary of a Bad Year (Coetzee), 527 Dickens, Charles, 435–6 Diderot, Denis, 262 digital humanities, 120–1, 128–9, 130, 289–90 digital patient project, 60–1 disability critical disability studies, 12–13, 261 culture of care, 602–3 disability as ability, 475, 475 social model of disability, 234–5 species difference, 472–3, 474, 475 see also blindness; spinal cord injury Disability Studies (Goodley), 472 Discipline and Punish (Foucault), 194, 329 Discorso (Magni), 217, 218–19 discursive practices, 9, 13, 41, 544–5, 549 dissection see anatomy and dissection (di)ssection (Allen), 201 The Doctor, His Patient and the Illness (Balint), 562 Doctor Who (television series), 305, 615–16, 617, 621 doctors see physicians ‘The Doctor’s Touch’ (Verghese), 330 ‘The Dog as a “Co-Therapist”‘ (Levinson), 466 Dorfman, Eran, 462n Drawing Women’s Cancer (Saorsa), 205 dreams, 414, 416–17 Drucker, Joanna, 130 dualism, 58–62, 343, 346–8, 448–9, 453, 454 Duchenne, Guillaume-Benjamin-Amand, 164–5, 168 Duden, Barbara, 124, 125, 127 Duffy, John, 428 Dumbstruck (Connor), 281

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Dumit, Joseph, 247, 248 Dupré, John, 115 ‘Dyspnea Relief’ (Peiffer), 301 dyspnoea see breath and breathlessness dystopic societies, 615–18 Ear on Arm (Stelarc), 319–20 Eco, Umberto, 170 The Economist (newspaper), 621 education for the blind, 260–1, 267–71 cultural competence, 541–6, 549–51, 554 and fat stigma, 230–1, 236 and life expectancy, 497 and the medical humanities, 4, 187–9, 565 oral context, 286, 289 ‘The Ego and the Id’ (Freud), 364 ‘Elaine Scarry and the Dream of Pain’ (Harpham), 165–6 Eliot, George, 158 ‘Elizabeth’ (Briggs), 231 Elliott, Anthony, 314, 315 Ellison, Ralph, 244, 246, 251–2, 255–6 Elyot, Thomas, 282, 512, 515–17, 523 embodied thinking, 278, 289–90, 331, 333 embodiment and dualism, 17, 346–8, 448, 449–50, 454 experience, 16, 349–50, 378, 484–5 and illness, 330, 458 and mental health, 432–3, 434, 436, 437 phenomenology, 379–80, 390–1, 452–3, 455–6 reflexive, 88, 89–91, 99 thought and feeling, 412–13, 434–5 and wonder, 339, 343, 345, 351–2 see also body emotions and breathing, 295–6, 300, 301 expression, 163–5 guilt, 95–8 medieval understanding, 173, 412, 415–18 proprioceptive feedback, 386–7 sympathy, 171–2, 181–2 and visual art, 189, 191 see also affect; pain empathy and criminology, 250, 253 and dementia, 599–600 denial of, 18 and theatre, 581, 590 value of, 5, 517–18, 520, 523 En el aire (Margolles), 196 end-of-life care, 3, 22–3, 402 Engels, Friedrich, 68, 69, 71 enhancement technologies, 312–14, 316–17 entanglement definition, 8–9, 38–9 and difference, 41–3, 44–5 experimental, 15–16, 39–40, 44, 158 and expertise, 25–6 holism and Chinese medicine, 74–5 and interdisciplinarity, 35–6, 39–41, 155, 371 models and reality, 156–7, 159 and phenomenology, 12 systems biology and Chinese medicine, 66–7

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650 entanglement (Cont.) trans-species, 10, 464, 468–71, 473–6 and the visual arts, 189, 194, 196, 203–4 Entierro (Margolles), 196 episteme, 544–5 epistemology and breathlessness, 295, 297 and cultural competence, 542–3, 549–50, 552 and the death penalty, 397–8, 400, 483 and the humanities, 155, 158–9 Ernaux, Annie, 598, 607 Ernsberger, Paul, 230 Eros and Thanatos, 364, 369 Esalen Institute, 74–5 An Essay Concerning Human Understanding (Locke), 262 ethics and cultural competence, 546–7, 551–2 and the death penalty, 395–6, 401–2 and enhancement technologies, 313, 319 medical exploitation, 612, 615–23 and the medical humanities, 3, 229–30, 341 of migration, 494–5, 499 and rationality, 350–1 of reading and writing, 136 and twin experiments, 113–16 and the visual arts, 191, 196, 203–4 The Ethics of Authenticity (Taylor), 522 eugenics, 112–13, 245–6, 247 euthanasia, 398 Evans, Bethan, 228–9, 235 Evans, H. Martyn, 36–7, 198 evolution, 69, 163–4, 243, 252–3, 430, 475 Exoskeleton (Stelarc), 319 exoticisation, 528–31, 533–4, 537 ‘Experimental Systems’ (Rheinberger), 57–8 experimentation, 44, 104–7, 110–16, 151–2, 153–8, 508, 547–8; see also morphological freedom; research ‘Exploring the Medical Humanities’ (Evans and Greaves), 37 The Expression of the Emotions in Man and Animals (Darwin), 163–4, 163, 168 The Expressiveness of the Body and the Divergence of Greek and Chinese Medicine (Kuriyama), 330 Extraordinary Bodies (Garland-Thomson), 261 ‘The Eye and I’ (Brook), 332–3 ‘Eye and Mind’ (Merleau-Ponty), 377 Fabricio, Girolamo (Fabricius), 277, 282–3 face beauty and ugliness, 168, 170–1, 174–5 disfigurement, 176–8, 177 expression, 163–5, 378, 386–8 suffering, 173–4, 530 Fading Away (Robinson), 174–5, 174 Falloppio, Gabriele, 283 Fanon, Frantz, 6, 22, 247 fat studies art and experience, 231–2 ethics, 229–30 and fat activism, 225–7, 228–9, 236 and medical education, 230–1

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index tensions within, 227–8, 232 theoretical perspectives, 232–6 ‘Fat Studies’ (Cooper), 226 The Fat Studies Reader (ed. Rothblum and Solovay), 230 feminism and the body, 178–9 and care, 603, 613–14 critical thinking, 8, 14 and entanglement, 9, 39 and fat activism, 226 and race, 549–50 see also women Feng Gia-Fu, 74 Fernet, Charles, 360 Fine, Aubrey H., 465 Finkelstein, Vic, 602–3 Fioravanti, Leonardo, 214–16, 218, 219 First as Tragedy, Then as Farce (Žižek), 587 first-person experience, 142–7, 387–91, 621–2; see also phenomenology Flint, Kate, 262 The Forbidden Body (Bovey), 230 Forman, Simon, 122–3, 129, 130 ‘Formless’ (Bataille), 365 formlessness, 365, 369 Fors Clavigera (Ruskin), 437, 438 Foster, Juliet, 580, 581, 586 Foucault, Michel the body, 178, 194, 329 clinical gaze, 123–4, 245, 331–2 critical theory, 5 discursive practices, 544–5 knowledge, 541 meaning of madness, 125 Ubu-esque power, 396–7, 400–1 François-Franck, Charles, 359 Frank, Arthur, 455, 457–8, 561, 568, 570, 628 Frankfurt School, 5, 6 Franko B, 194–5 Fraser, Nancy, 603 Fretwell, Erica, 245 Freud, Sigmund, 363–4, 365 Fricker, Miranda, 549, 550, 551 A Friend like Henry (Gardner), 463–4, 469–70, 472, 473, 474 ‘From Western Marxism to Western Buddhism’ (Žižek), 76 Fudge, Erica, 465 Furman v. Georgia (1972), 397 Galás, Diamanda, 180 Galen, 282, 412, 511, 515 Gallagher, Shaun, 11, 166, 381, 482, 486 Galton, Francis, 107, 110, 245–6, 438 Garden, Rebecca, 234 Gardner, Nuala, 463–4, 469–70, 472, 473, 474 Garland-Thomson, Rosemarie, 261 Garratt, Peter, 7, 484, 485, 486 Geertz, Clifford, 46n Gelb, Aldhémar, 454 genetics and genome studies cultural and social aspects, 92–9 interpretation, 87–8, 91–2

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index post-genomic techniques, 158–9 reflexive embodiment, 88–91, 99, 154 twin studies, 105–8, 109–16 Genomes and What to Make of Them (Barnes and Dupré), 115 geography education for the blind, 267–8 haptic, 264–6 tactile maps, 269–71 Germany and Chinese medicine, 73 eugenics, 112–13, 547 genomic research, 94–9 interwar holism, 67–8, 75 Gestalt therapy, 74 gesture, 380–4, 387, 482 Gesture and Thought (McNeill), 382 Giannini, A. James, 386 Giffney, Noreen, 232 Gillies, Harold, 176–8 Ginsburg, Ruth Bader, 403 globalisation and care practices, 611–12, 615, 627 medical expertise, 499–501, 554 movements and migrations, 21–2, 492, 494–5, 497, 501–2, 629–30 and transplant technology, 620–3 Goffman, Erving, 168, 172 Goldstein, Kurt, 74, 454, 455 Gomoll, Lucian, 317–18 Good, Mary Jo Del-Vecchio, 542, 543–4, 548–9, 552 Goodall, Jane, 317, 320 Goodey, C.F., 472 Goodley, Dan, 472 Gould, Stephen Jay, 104 Greaves, David A., 37, 343 Gregg v. Georgia (1976), 397, 399 Grosz, Elizabeth, 320 Grounded Theory (GT), 94, 95 Guenther, Lisa, 483–4, 485, 487, 581, 621 guilt, 95–8 ‘Gut Language of Somatizing Patients’ (Brook), 334n Guthman, Julie, 231 Guzmán, Patricio, 348 habitus, 296–7 Hacking, Ian, 104, 153 Hagens, Gunther von, 186 The Handmaid’s Tale (Atwood), 611 The Hanged Woman (Artaud), 366 haptic perception, 262–6, 269, 271, 330 Harper’s Magazine, 316 Harpham, Geoffrey Galt, 165–6 Harpin, Anna, 628 Hartley, David, 265 Harvey, Elizabeth D., 210 Harvey, William, 508 Hatoum, Mona, 193–4 Head, Henry, 449 Headrick, Daniel R., 547 The Healing Tradition (Greaves), 343 Health and Social Care Act (2012), 601–2

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Health at Every Size (HAES), 225, 227, 229 Healthtalk.org, 568, 569 ‘Hearing the Voice’ project, 294, 411, 412, 414 Hegarty, Frances, 605–6, 607 Hekman, Susan, 14 Helmreich, Stefan, 469 Hereditary Genius (Galton), 438 heredity, 87, 107–9, 112–13, 438 Herigstad, Mari, 300, 301 Herman, David, 10–11, 348, 485, 487, 534 Hess, Volker, 561, 562 Hester, Rebecca J., 631 highly active anti-retroviral therapy (HAART), 534, 535–6, 537 Hilden, Julie, 598, 607 Hippocrates, 121, 220–1, 412 Hirszfeld, Aleksandra, 202 historical perspectives on art and medicine, 19, 371 on biomedicine, 6–7, 20–1, 510–11, 549 on Chinese medicine, 79–81 on holism, 68–75, 78–9 on medical records, 120–7 on pain, 165, 166, 168–70, 171–2 on raced imagery, 244–7, 251–2, 256 on the senses, 210, 268–71, 279, 281–6, 414 on twins, 106–7, 112–13 see also Renaissance historical semantics, 509–10 ‘History and Fiction as Modes of Comprehension’ (Mink), 561 A History of Intelligence and ‘Intellectual Disability’ (Goodey), 472 ‘The History of Twins, as a Criterion of the Relative Powers of Nature and Nurture’ (Galton), 107 Hitchcock, Tim, 127 HIV/AIDS, 179, 494–5, 528, 534–8, 630 Hobbes, Thomas, 508 Hoberman, John, 546, 547 Hoel, Aud Sissel, 59 holism and brain function, 454, 455 and Chinese medicine, 68–72, 78–81 conceptions of, 66–9, 81 and the medical humanities, 37–8 and systems biology, 76–8 in the West, 72–6 Holman, James, 263–8, 267, 271 Holmqvist, Ninni, 617 Holt, Terry, 566 Holy Wind in Navajo Philosophy (McNeley), 305 Homosexual Death Drive, 233 Hopwood, Joseph Stanley, 579, 585, 587 Horizon: Patient or Prisoner (documentary), 580 Horkheimer, Max, 6, 66 Hornstein, Gail A., 578 The Horse Boy (Isaacson), 463–4, 469–71, 472, 473, 474–5 Horton, Richard, 559 Hübotter, Franz, 73 Huff, Joyce L., 232 Huggan, Graham, 528–9, 531, 537 Hughlings Jackson, John, 444, 450

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652

index

‘Human/Companion Animal Therapy’ (Levinson), 466 ‘Human Genetic Enhancements’ (Bostrom), 313–14 human rights and citizenship, 577, 603, 627–8, 629 critical theory, 13 to health, 528, 532, 533, 537–8 morphological freedom, 312, 313–14, 316 and organ donation, 621–3 humanism, 5, 43, 482, 509, 510–15; see also posthumanism humanity and culture, 529, 532, 533 and non-humanity, 24, 43–4, 115, 463–4, 472–5, 615–18 specialness, 350–1 see also morphological freedom humours, 412, 413, 415–16, 511, 516 Hunter, William, 178 Hurwitz, Brian, 37, 446, 629 Husserl, Edmund, 92, 136, 148, 151, 378, 379 hygienism, 360–2, 370, 371 I Ching (a.k.a. Book of Changes), 72, 73–4 I Ging: Text und Materialien (Wilhelm), 73–4 I Miss You! (Franko B), 194 I Remain in Darkness (Ernaux), 598, 607 identity, 217–18, 266–7, 321, 549–50, 603; see also humanity Identity and Otherness (Clair), 178 illness and colonialism, 531 cultural and social aspects, 95–9, 175–6, 176, 294–5, 297–8, 534–8 and language, 446–51, 457–8, 510 narrative, 4–5, 24–5, 124–5, 482–4, 560–1, 564–70 personal responsibility, 604 and phenomenology, 377–8, 452–3, 455–7 and the senses, 330, 332–3 and visionary experience, 418–19, 422 see also breath and breathlessness; mental health; pain; tuberculosis (TB) Illness as Metaphor (Sontag), 173–4, 530 Illness (Carel), 453 The Illness Narratives (Kleinman), 560 image and emotional response, 168, 170–1 facial injury, 176–8, 177 and haptic perception, 266–7 and religion, 172–3 and suffering, 174–5, 181–2 see also medical imaging The Image of our Body (Lhermitte), 358–9, 367, 369 The Image of the Body (Schilder), 358, 361 imperialism, 79–80, 227, 528, 547–54; see also colonialism ‘In Memoriam’ (Tennyson), 436–7 ‘In Memory of W. B. Yeats’ (Auden), 440n indigenous peoples belief systems, 534–8 and biomedicine, 22, 528–9, 530–2 transculturation, 529–30, 533, 538

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inflammatory bowel disease, 94–9 Inside Broadmoor (documentary), 580 interdisciplinarity and breathlessness, 297–8, 301 and computational modelling, 53–4 and entanglement, 26, 35–6, 39–41, 44–5, 371 and integration, 36–8, 42–3, 154–5, 156 and intradisciplinarity, 481 and the visual arts, 189, 196–7, 200–1, 203–6 Interpretative Phenomenological Analysis (IPA), 94, 95 Introduction to Chinese Medicine (Qin), 70 Inuit, 529–33, 538 Invisible Man (Ellison), 244, 251–2, 255 Isaacson, Rupert, 463–4, 469–71, 472, 473, 474–5 Ishiguro, Kazuo, 616, 617–18 The Island (film), 616, 621 Jacyna, L. Stephen, 449 James, William, 297 Jameson, Fredric, 605 Jane Eyre (Charlotte Brontë), 435 Jay, Martin, 210 Jernigan, Joseph Paul, 326 Jewson, Nicholas, 124 John Stuart Mill (Bain), 434 Johnson, Alan, 395 Johnson, Miriam J., 299 Jolly, Rosemary J., 22, 630, 631 Jones, Amelia, 194 Jonson, Ben, 209–10 Jordanova, Ludmilla, 188, 371 Joye, Yannick, 467 Juler, Edward, 483, 485 Julian of Norwich, 172, 415, 418–20, 423 Jung, Carl Gustav, 73–4 Kandel, Eric R., 47n Kant, Immanuel, 157, 340, 430 Kassell, Lauren, 559 Katcher, Aaron, 466–7 Kellert, Stephen R., 467 Kempe, Margery, 415, 418, 420–2, 423 Kirksey, S. Eben, 469 Kleege, Georgina, 262 Kleinman, Arthur, 560, 628 Klestinec, Cynthia, 190–1, 277, 278, 283 Klinkenborg, Verlyn, 281 Klitzman, Robert L., 94 Knight’s Tale (Chaucer), 415–16 Kohn, Eduardo, 465, 469 Konrad, Monica, 93 Koppelman, Susan, 231 Kraft, Randy, 254–5 Kreiswirth, Martin, 559 Kristeva, Julia, 178, 179–81, 365 Kuhn, Thomas, 156–7 Kullmann, Kasandra, 530 Kuriyama, Shigehisa, 330 Kurzweil, Ray, 312 La Cirugia (Fioravanti), 215–16 La Construction de l’homme (Mabille), 371 ‘La Mort et l’homme’ (Artaud), 368–9

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index ‘La Philosophie culturiste pratique et messieurs les culturistes’ (Chevillet), 361 La Primaudaye, Pierre de, 280 Laboratory Life (Latour and Woolgar), 56–7 Labov, William, 563 Lacks, Henrietta, 547 Laing, Ronald David, 77, 151 Lamarque, Peter, 561 The Lancet (journal), 560 Lande, Brian, 304 language for the blind, 262 and cerebral palsy, 389 eye and mind, 332–3 and gesture, 380–4, 387, 482 and illness, 447, 449–50, 451–2, 457–8, 482 inclusivity, 205 literacy, 290 non-propositional, 450–1, 483 and pain, 165, 166, 180, 448 poetic, 432, 445, 456 and race, 252, 255 and representation, 454–6 semantics, 509–10, 520–1 see also narrative; voice Lansing, Robert W., 301, 302 Laocöon and his Sons, Attacked by Sea Snakes (etching by Dalton), 169 Laocoon Group (sculpture), 168–9, 181 Laocoon (Lessing), 169–70, 171 Laocoon’s Body and the Aesthetics of Pain (Richter), 168–9 Laqueur, Thomas, 562 Larbaud, Valéry, 444, 445 Larry’s Kidney (Rose), 612 larynx, 280–1, 282, 283 Latham, Peter Mere, 165 Latour, Bruno, 5, 56–7, 111 Launer, John, 567 law and the death penalty, 397–401, 402–3 and organ transplantation, 621, 622 and social care, 597, 601–2 see also criminality Leder, Drew, 379, 453, 566 A Leg to Stand On (Sacks), 563 Lei, Sean Hsiang-Lin, 86n Leibniz, Gottfried Wilhelm, 73 Leiris, Michel, 369 Leonardo da Vinci, 186 Les Vertus hygiéniques (Fernet), 360 Lessing, Gotthold, 169–70, 171, 174 ‘The Lethal Injection Quandary’ (Denno), 402–3 Let’s Dance (Hegarty), 605–6, 607 Levinson, Boris, 466 Lewes, George H., 158 Lewis, Clive Staples, 349 Lhermitte, Jacques Jean, 358–9, 367, 369 life expectancy, 491, 495–7, 501, 502 ‘Life in Quest of Narrative’ (Ricoeur), 559 ‘Life of Breath’ project, 294, 300, 302, 306 life-states, 40–1, 42, 43 lifestyle medicine, 310, 315; see also consumer medicine

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lifeworlds, 87–8, 91, 92–3, 94, 99 Lilienfeld, Scott O., 468 Lindee, M. Susan, 105 Lingua (Tomkis), 279 Listening (Nancy), 331 literacy, 290, 428, 441n literature and dementia, 597–8, 605–7 dystopic, 616–18 and fat studies, 230, 231 and illness, 330, 447–8, 451, 530 realist, 56 therapeutic effect, 429–34, 439 and voice-hearing, 412, 414–23 see also art; narrative Liu Changlin, 72 ‘Living in a Posthumanist Material World’ (Barad), 40–1 Locke, John, 262, 265 Lockett, Clayton, 396 Logan, Peter, 562 Lombroso, Cesare, 242–3 London Hospital Gazette, 171–2 London Review of Books, 105 Long, Barrie, 563 Longhurst, Robyn, 231 ‘Loss of Speech’ (Hughlings Jackson), 450 Lukács, György, 78 Lundahl, Brad, 468 Luria, Aleksandr R., 563 Lyth, Heidi, 231 Mabille, Pierre, 359–60, 362, 371 Macbeth (Shakespeare), 432 MacDonald, Michael, 124, 125, 126–7 McGrath, Patrick, 578, 579 McGuire, Dennis, 395–6, 405 McKinnon, Morag, 316 Macnaughton, Jane, 36–7 McNeill, David, 381–3, 482 Macneill, Paul Ulhas, 188, 365–6, 370 McNeley, James Kale, 305 Macrobius, Ambrosius Theodosius, 425n The Magic Mountain (Mann), 344, 531 Magni, Pietro Paolo, 217, 218–19 Magritte, René, 50 Mahr, Dana, 346 ‘Making Space for Fat Bodies?’ (Colls and Evans), 235 Malabou, Catherine, 461n Malawi, 495 Mallarmé, Stéphane, 450 Mann, Thomas, 344, 531 Mao Zedong, 69, 78 Marey, Etienne-Jules, 359 Margolles, Teresa, 196 Marino, Lori, 468 marketplace for healthcare competence, 544, 545, 553 early modern period, 210–11, 216, 218, 219, 221, 511 medical tourism, 612, 619, 620–3 and neoliberal economics, 315, 317, 500–1, 629 social care, 599–600, 603–4

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654 Martyrdom of Saint Sebastian (painting), 173 Maslow, Abraham, 74 Material Feminisms (Alaimo and Hekman), 14 materialism, 364–5, 369 materiality base, 366, 369–70 and the digital, 128–9 importance, 345–6 vital, 115, 116 and wonder, 348, 351–2 see also embodiment Matsumoto, David, 386 The Matter of Air (Connor), 303 Maudsley, Henry, 436, 437, 438–9 Mayo, Oliver, 113 Mbeki, Thabo, 534 measuring body, 59 The Mechanism of Human Facial Expression (Duchenne), 164 Mechthild (research participant), 96–7 ‘Mediated Involvement’ (Plotz), 433 ‘Medical Education and Disability Studies’ (Campbell), 261 medical imaging and art, 193–4, 326–8 breathlessness, 300, 301 and criminality, 252–5, 253 cultural contexts, 243–5, 247–8 interpretation, 246–7, 248, 249 photography, 245–6 and race, 242–3, 248–50, 252, 255–6 visualisation of movement, 385 medical records data and narrative, 126–7, 569–70 digitising, 120–1, 127–31 history, 121–6 medical sites, 22–3, 41–2 Medical Talk and Medical Work (Atkinson), 564 medicalisation, 226, 234, 235, 491, 497, 499 ‘Medicine and Human Flourishing’ project, 341 Medieval and Early Renaissance Medicine (Siraisi), 216 medieval thought mind, body and emotion, 173, 412–13, 415–18, 423 religious, 172, 414–15, 418–22 the supernatural, 413–14 MedlinePlus, 280, 281 Meeting the Universe Halfway (Barad), 9, 39 Melson, Gail F., 466, 467 Mendelsohn, Andrew, 561, 562 Mengele, Josef, 24, 113 mental health anorexia nervosa, 532–3 bibliotherapy, 428–30, 431, 433–4 and brain imaging, 248 and empathy, 517–18 medieval understanding, 412–13 and physical illness, 96–8, 332–3, 457 policy, 144 and race, 251–2 risk thinking, 589 and Victorian science, 430–9

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index see also Broadmoor Hospital; Freud; psychiatry; voice-hearing Mental Health Act (2007), 592n Mercuriale, Girolamo, 286 Merleau-Ponty, Maurice, 59, 359, 377, 379, 452–7 Merriman, Curtis, 112 methodologies arts and medicine, 187–8, 204–5 computational models, 51–3 research strategies, 94, 95, 156 twin studies, 105–6, 113 Metzl, Jonathan, 244, 251 Miall, Chris, 385 Michaux, Henri, 356 Michey (research participant), 388–9 Midgley, Mary, 472 migration doctors and nurses, 492–4 ethics, 494–5 and health outcomes, 491–2, 495–6, 496, 497 and the healthcare market, 500–1, 630 planning and regulation, 498–9, 501–2 Mikrokosmographia (Crooke), 278, 280, 286–9, 288 Mill, John Stuart, 431–4, 439 Minae (research participant), 388, 389 mind and brain, 248, 347, 432–3, 438 and eye, 332–3 and language, 450–1 mind-body relationship, 360–1, 412–18, 434–5, 448, 449–50, 453–4 psychosomatic model, 96–8, 363 and voice, 282, 286, 290 see also brain; holism Mink, Louis, 561 Minnesota Study for Twins Reared Apart (MISTRA), 111, 113 mirror drawing, 384–5 ‘Misdirected Precaution’ (Prainsack and Reardon), 89 Mishler, Elliot, 563 Möbius syndrome, 386–8, 389 modelling agency, 58–9 breathlessness, 301–3, 302 computational, 51–5, 52, 60–1 experimental systems, 57, 156–7, 158 medical migration, 491–2, 497–9, 501–2 models as fictions, 55–6, 58 in science, 50–1, 62 ‘Modern Fiction’ (Woolf), 451, 457 Modern Painters III (Ruskin), 438 modernism and aphasia, 445–6, 447, 449–50 and language, 482–3 psychological aesthetics, 439 and subjectivity, 446, 451–2, 457–8 ‘Modernism, Medicine and the Embodied Mind’ network, 461n modernity, 67, 73, 75, 77, 78–82 The Modulated Scream (Cohen), 165, 172 Moholy-Nagy, László, 191 Molyneux, William, 262

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index Moments of Truth in Genetic Medicine (Lindee), 105 Montgomery, Kathryn, 565 Montross, Christine, 189 Moran, Dermot, 296 Morandi, Anna, 213, 214, 214 More, Max, 312 ‘More than One World, More than One Health’ (Hinchliffe), 42 More, Thomas, 512 Moreira, Tiago, 42 Morning Post, 264 morphological freedom commodification, 315–17 development of concept, 310–15 in practice, 317–21 mortality rates, 495–7, 496 Moscoso, Javier, 165 motor imagery, 384–5 multi-species ethnography, 469–70 The Multiple Dimensions of Dyspnea (Lancing et al.), 302 Murray, Ros, 365 Murray, Samantha, 231–2 museums, 268 Musso, Carlo, 402 mutuality, 522 Mystical Bedlam (MacDonald), 124, 125 Nancy, Jean-Luc, 331 Napier, Richard, 122–3, 125, 126, 129 narrative carer’s, 597–8, 605–7 case histories, 126, 559–60, 561–4 fictionalism, 57–8 and gesture, 382–4, 482 in modern medicine, 4–5, 18–19, 564–7, 628–9 and modernism, 446–7, 451 narratology, 473–6 organ transplant, 612, 615–18, 620, 621–2 patient’s, 95–9, 123–5, 296, 339, 560–1, 568–70 phenomenological, 379, 391, 452, 455–6, 578 postcolonial, 528–33 and Surrealism, 356–7, 371–2 Narrative-based Primary Care (Launer), 567 Narrative Medicine (Charon), 342, 482, 565–6, 628–9 The Narrative of a Journey (Holman), 265, 267 National Health Service (NHS), 491, 494, 501, 613 National Institutes of Health (NIH), 220; see also MedlinePlus Natural Causes and Supernatural Seemings (Maudsley), 436, 438–9 ‘Nature and I are Two’ (Joye and De Block), 467 The Nature of Suffering and the Goals of Medicine (Cassell), 342 natureculture, 43 Navajo people, 304, 305 necropolitics, 396, 403–4 Needham, Joseph, 73 neoliberalism, 315, 321, 497, 545, 603–4 Néry, Guillaume, 305–6 neurocriminology, 242–3, 250, 252–5; see also criminality

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neurological impairment cerebral palsy, 388–9 deafferentation syndrome, 380–6 Möbius syndrome, 386–8 phenomenological insights, 378, 391, 454–6 spinal cord injury, 389–91 see also aphasia; autism Never Let Me Go (Ishiguro), 616, 617–18, 621 New England Journal of Medicine, 562 New York Times (newspaper), 281 Newman, Horatio H., 113 Newton, Lisa, 522 Nieden, Andrea zur, 94 Nimer, Janelle, 468 ‘No More Stitch-Ups! Media Literacy for Fat Activists’ (Cooper), 236 Nostalgia for the Light (Guzmán), 348 nurses density of personnel, 495–7, 496 migration, 491–5, 498–9, 500–2 Nussbaum, Martha C., 114 obesity see fat studies Observations on Man (Hartley), 265 Ofili, Chris, 179 O’Haire, Marguerite E., 468 Olsén, Jan Eric, 278–9 ‘On Affections of Speech from Disease of the Brain’ (Hughlings Jackson), 444 On Being Ill (Woolf), 330, 447–50, 451–2, 457–8 ‘On Respiration’ (Aristotle), 304 ‘On the Holistic Perspective in the Chinese Healing Art’ (Otto), 73 On Ugliness (Eco), 170 ‘One of the Girls’ (Lyth), 231 One Perfect Day (Snelling), 618 Ong, Walter J., 290, 440n The Opacity of Narrative (Lamarque), 561 Opera Physica Anatomica (Fabricius), 282–3 operating theatre, 197–201, 197, 198–200, 318–19 Orality and Literacy (Ong), 290, 441n Orange, William, 579 ‘Organ Theft Narratives’ (Campion-Vincent), 622 organ transplantation see transplant technology The Organism (Goldstein), 74 Orlan, 182, 318–19, 320–1, 348 Oswald, Neville C., 530 Ott, Katherine, 268 Otto, J. H. F., 73 Oxford English Dictionary, 263, 281, 512, 601 Padua, 215, 277, 283, 286 pain art and beauty, 168–71, 174–5, 181–2 and breathlessness, 301, 302 in Christian theology, 172–3, 175–6 and corporeal sensibility, 364 cultural and social aspects, 166–8, 171–2, 181 and the death penalty, 396, 397, 398–9, 404–5, 483–4 description, 165–6, 167 and language, 448–9 psychophysiology, 357, 361–2 and representation, 176–8, 180

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index

pain (Cont.) signs, 163–5, 163 and spinal cord injury, 390–1 see also abjection Pain (Moscoso), 165 palliative care, 398, 402 Panorama (television series), 596 Papeles (Margolles), 196 Para-Academy, 236 Parisi, David, 273n Partridge, Ralph, 580, 586 A Passage to India (Forster), 531 paternalism, 521–2, 550, 551, 586, 587, 590 patients compliance, 218–19, 220–1, 551, 553 conceptualisations of, 123–5, 518 erasure, 549–51 object-hood, 350, 548–9, 552 organisations, 568–9 trust, 521 voice, 126–7, 339, 342–3, 516–17, 560–3, 578 ‘The Patient’s View’ (Armstrong), 123 ‘The Patient’s View: Doing Medical History from Below’ (Porter), 123 PatientsLikeMe, 569 Patterson, Kevin, 527, 529–33, 538 Pearson, Steven D., 521 Peckitt, Michael G., 388–9 Peiffer, Claudine, 300, 301 Pelters, Britta, 94 The Penny Cyclopædia, 269–70 Penthaesteseion (Casserius), 213 performance art, 182, 194–5, 233, 310–11, 317–21, 348 ‘Performance in Bethlem, Fulbourn, and Brookwood’ (Foster), 581, 586 Perls, Fritz, 74 personalised medicine, 60, 66–7, 76 phenomenology affect and experience, 301, 302–3 body as object or subject, 379–80, 388–9, 452–3 body schema, 88 habitus, 296–7 and modernism, 446–7, 452, 457–8 and neurological impairment, 377–8, 380–8, 390–1, 455 and psychophysiology, 358–9 role in the medical humanities, 11–12, 486 status of, 137–40, 148–51 see also first-person experience; philosophy ‘Phenomenology as a Resource for Patients’ (Carel), 457 The Phenomenology of Perception (Merleau-Ponty), 359, 452–3, 454–5 philosophy and art, 205 associationism, 265–6 and listening, 331–2 materialism, 364–5 Molyneux’s problem, 262 positivism, 155–7 transhumanism, 310–17, 320–1 and voice, 277–8, 279–80, 285, 288–90 see also holism; phenomenology

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Photographic Journal, 175 photography, 164–5, 174–5, 197–200, 198–200, 245–6, 252 phrenology, 245, 247 ‘Physician and Patient’ (Smith and Newton), 522 physicians authority, 219, 522–4, 551–2 communication, 4, 125, 446, 509, 510 competence, 544–5, 550–1, 552–4 counsel, 516–22 and the death penalty, 401–2 density of personnel, 496–7, 496 early modern period, 511 empathy, 342–3, 523 migration, 492–5, 498–502 prejudices, 230, 244–6, 251–2, 546–50 touch, 210–11, 330 see also surgery Picasso, Pablo, 50 Pinter, Harold, 586 The Place of Breath in Cinema (Quinlivan), 303–4 Plastic Surgery of the Face (Gillies), 176–8 Plomin, Robert, 108, 111, 112 Plotz, John, 433 ‘The Poetics of Tourette’s Syndrome’ (Schleifer), 456 poetry, 169–70, 179–80, 231, 431–4, 436, 450, 456 politics of capital punishment, 396–401, 405 commodity fetishism, 528–9 and cultural dominance, 543, 546–8, 553–4, 629–30 and holism, 70, 71, 75–6, 77–8 and human rights, 533, 537–8 of identity, 603 of representation, 549–50 see also biopolitics; capitalism; feminism; neoliberalism Poll, Heinrich Wilhelm, 112–13 Pomata, Gianna, 122, 223n Porter, Roy, 123, 124, 127, 346 Portrait of Private Kearsey (Tonks), 177 positivism, 56, 154–7 The Postcolonial Exotic (Huggan), 528–9 postcolonialism and biomedicine, 527–8, 534–8, 554 exoticisation, 528–31, 533 ‘Posthuman Performance’ (Gomoll), 317–18 posthumanism, 310, 312–13, 314, 316–18, 320 postmodernism, 192, 232 Poupou rabou . . . (Artaud), 356, 357 Povinelli, Elizabeth A., 151 Powers of Horror (Kristeva), 178, 179, 365 Praeterita (Ruskin), 437 Prainsack, Barbara, 89 President’s Council on Bioethics, 313 Pride and a Daily Marathon (Cole), 381, 384 primal scene, 2–4, 124, 172, 341 ‘Prime Minister’s Challenge on Dementia’ (Department of Health), 599–600 Project ANATOME, 187 The Promise of Happiness (Ahmed), 233 ‘Proposal for an Academic Association of the Medical Humanities’ (Arnott et al.), 3, 4, 37 proprioception, 378, 380–7, 563

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index The Protest Psychosis (Metzl), 244, 251 psychiatry auditory hallucination, 294, 411–12, 418, 422, 423 diagnostic images, 245–7, 248 first-person experience, 137–47 and race, 251–2 risk thinking, 589 see also Broadmoor Hospital; mental health psychology animal-assisted interventions, 466–8 and art, 430–9 Gestalt psychology, 67, 74, 454 inner speech, 417 medieval, 412–15 racialisation, 243–4, 245–7, 248–50, 251–4 ‘Psychology/Aesthetics in the Nineteenth Century’ (Burdett), 430 psychophysiology and autoscopy, 367–70, 485 and blindness, 263 and corporeality, 359–60, 361–4 and phenomenology, 11, 358–9 and Surrealism, 356–8, 371 psychosis, 11, 139–42, 144–51, 422, 423 psychosomatic illness, 88, 94–5, 96–8, 332–3, 356–8, 361 Punch (magazine), 175 Pynor, Helen, 202–3 Qian Xuesen, 71 Qin Bowei, 70, 78 Quaeghebeur, Liesbet, 383 quantum physics, 40, 74 queer theory, 226, 232–5 QUILTBAGG, 234–5 Quinlivan, Davina, 303–4 race categorising, 491–2 and criminology, 242–3, 250, 252–6 and cultural competence, 541–3, 546–50 and diagnostic medicine, 243–50 and eugenics, 112–13 and psychiatry, 251–2 and TB, 530–1 see also colonialism; migration Raeke, Lisa H., 521 Raine, Adrian, 242–3, 250–1, 252–6 Raphael, David D., 340 rationality, 350–1 Raynalde, Thomas, 277 ‘Re-Imagining Embodiment’ (Shildrick), 316 ‘Re-Thinking Care in a Society Providing Equal Opportunities for All’ (Finkelstein), 602–3 Reader Organisation, 441n reading aloud, 281, 287, 290, 440n in Consumption, 531 effect on the mind, 434–7, 439 and health, 428–31, 433–4 Renaissance vernacular medicine, 511–12 Reading Agency, 441n

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657

realism, 51, 53–6, 58, 60–2, 154, 446; see also agential realism Reardon, Jenny, 89 Reddit Futurology discussion board, 311–12 reflexive embodiment, 88, 89–91, 99 Rehmann-Sutter, Christoph, 94, 346 The Reincarnation of Saint-Orlan (Orlan), 318–19 reinvention culture, 314–17, 318, 320–1 Reinvention (Elliott), 315 Reiss, Benjamin, 577, 580, 584, 588 Renaissance Christian art, 173, 173 ‘counsel,’ 512–17, 513, 514, 515, 523 humanism, 508–9, 510–12 voice and anatomy, 190, 276–8, 279–89, 331 Rende, Richard, 112 Replaceable You (Serlin), 316–17 representation difficulties, 25, 139–41, 144–5 and language, 454–5, 456 models and reality, 50, 54–5, 56 of pain, 176–8, 180–1 see also realism The Representation of Bodily Pain in Late Nineteenth-Century English Culture (Bending), 165, 175 research and activism, 227–8 and entanglement, 37–8, 44–5 ethics, 113–15 genomic, 88–9, 93–9 investment, 298–9 and patients’ stories, 568–9 political dimensions, 9, 144 twins, 10, 104–13, 115–16 and the visual arts, 204–6 see also modelling; systems biology and biomedicine Research Justice, 235–6 ‘Rethinking Ethnography’ (Conquergood), 543 Revelations of Divine Love (Julian of Norwich), 420 Revolution in Poetic Language (Kristeva), 180 Rheinberger, Hans-Jörg, 57–8 Richards, Jennifer, 189–90, 195, 196, 303, 331 Richards, Martin, 94 Richardson, Alan, 265 Richmond, Chantelle, 530 Richter, Simon, 168–9 Ricoeur, Paul, 559 Rion, John Paul, 395 Risse, Guenter B., 126 The Rites of Passage (Allen), 193 Roberts, Michael Symmons, 305, 306 Robinson, Henry Peach, 174–5, 174 A Room of One’s Own (Woolf), 451 Rose, Daniel Asa, 612 Rose, Nikolas, 114, 589, 629 Rosen, Joe, 316 Rosenberg, Daniel, 130 Rosenkranz, Karl, 170, 174 Rosenthal, Norman, 179 Rossi, Michael, 105 Royal Shakespeare Company (RSC), 588, 589

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658

index

Royal Society, 508 Ruskin, John, 437–9 S/Z (Barthes), 56 Saatchi, Charles, 179 Sabine (research participant), 98–9 Sacks, Oliver, 377, 379, 380, 563–4, 568 The Sacred Heart (Aguilera-Hellweg), 198 Salisbury, Laura, 482–3, 485, 486 Sandberg, Anders, 312 sangoma, 534 Saorsa, Jac, 205 Sarat, Austin, 399 Sass, Louis, 151 Saunders, Corinne, 278, 481, 484, 486 Sawday, Jonathan, 276 Sawyer, Ronald, 126 Scarry, Elaine, 165–6, 180, 448 Scheid, Volker, 158, 527 Scheper-Hughes, Nancy, 622 Schilder, Paul F., 358, 359, 361–2 Schleifer, Ronald, 456 Schmidt, Carol, 235 Schneider, Johann, 454 Schneider, Ralf, 474 Schrödinger’s cat, 40–1 Schusterman, Richard, 359 science and technology studies (STS), 39, 56–7, 90 Scully, Jackie Leach, 94 Sebold, Alice, 597–8, 606–7 Segal, Nancy, 111 self-help manuals, 511–12 self-improvement and reinvention, 314–17, 318, 320–1 semantics, 130, 509–10, 518, 520–1 Sensation (Rosenthal), 179 senses and anatomy, 189–91 hierarchy, 278–9, 288–90, 328, 329, 414 and illness, 330 inner, 413, 419 listening, 331–3 and voice, 279, 286, 287, 288–9 see also blindness; sight; touch Sensible Flesh (Harvey), 210 Serlin, David, 316–17 Serres, Michel, 268, 328 Seven Pounds (film), 620 sexual abuse, 144, 532–3, 597, 598, 606 The Sexual Awkwardness of God (Artaud), 369, 370 Shakespeare Comes to Broadmoor (ed. Cox), 588 Shakespeare, William, 432 Shaw, Andrea E., 232 Shields, Derica, 233 Shildrick, Margrit, 316 ‘Should Medical Humanities Be a Multidisciplinary or an Interdisciplinary Study?’ (Evans and Macnaughton), 36–7 Siemens, Hermann Werner, 112, 113 sight and listening, 331–3 loss, 260, 264 primacy, 262, 278–9, 288–90, 328, 329, 414

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and touch, 210, 263, 266–7, 269–71, 281–2, 330–1 see also autoscopy; visionary experience; visualisation The Silent Twins (Wallace), 588 Siraisi, Nancy G., 216 Sizwe’s Test (Steinberg), 528, 534–8 Smith, David G., 522 smoking, 298–9, 304 ‘Smoking Causes Creative Responses’ (Denis), 304 Smuts, Jan, 68 Snelling, Lauraine, 618 social care and abuse, 596–8, 605–7 and austerity, 599–600 cultural perception, 604–5 definition, 600–1, 602–3 legislation, 601–2 see also care Society for Psychical Research, 436 sociobiology, 253–6 soldiers, 176–8, 177, 304 Solovay, Sondra, 229 ‘Some Thoughts on the Lost Art of Reading Aloud’ (Klinkenborg), 281 ‘Sonnet en yx’ (Mallarmé), 450 Sontag, Susan, 173–4, 530, 628 South Africa apartheid, 68 HIV/AIDS, 534–8, 630 medical migration, 494–5, 498 Sarah Baartman, 547 specialness, 350–1 species difference, 472–3, 474, 474, 475 The Spell of the Sensuous (Abram), 304 Spiegelberg, Frederic, 74 spinal cord injury, 378, 380, 389–91 Squier, Susan Merrill, 24, 631 Steinberg, Jonny, 528, 534–8 Stelarc, 319–21 Stengers, Isabelle, 111 stigma, 168, 171–2, 174, 227, 230, 298, 537–8 Still Lives (Cole), 389–90 stoicism, 169, 171–2, 176–8 Storch, Johann, 125 story see narrative The Story of Pain (Bourke), 165, 166, 171 Storytelling and the Sciences of Mind (Herman), 473 Study after Velázquez’s Portrait of Pope Innocent X (Bacon), 180 subjectivity, 446–7, 451–3, 528, 546, 548–9; see also phenomenology suicide, 532–3, 620 Suite de l’Académie Françoise (La Primaudaye), 280 supernatural, 413–18, 423, 436–7; see also visionary experience surgery and anatomy, 214–16, 287 and barbers, 211, 217–21, 511 bloodletting, 216–-17, 515 cosmetic, 310–11, 315–20 health tourism, 500 plastic, 176–8 thoracoplasty, 530, 532

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index and visual art, 197–201, 197, 198–200 see also transplant technology Surrealism and corporeality, 356–7, 362–5 and language, 445 and psychophysiology, 358–60, 366–72 Swann, David, 306 Sydenham, Thomas, 122 sympathy, 171–2, 181–2 syphilis, 174, 547 systems biology and biomedicine and Chinese medicine, 66–7, 71–2, 76–8 experimentation, 153, 157, 158 genomics, 91–2, 159 modelling, 50–5, 57–8, 60–2 see also holism systems theory, 71–2, 76–7 Sztokmanska, Agneszkia, 596 tactile maps, 264, 269–71 Taylor, Charles, 522 Taylor, Kim, 231 ‘Technological Self-Transformation’ (More), 312 technology cloning, 615–18 and data analysis, 126–7 and materiality, 128–9 transplant technology, 611–12, 615, 618–23, 627 twins as, 105–6 see also medical imaging; morphological freedom; systems biology and biomedicine Tennyson, Alfred, 436–7 Teo, Thomas, 113 That Hideous Strength (Lewis), 349 Theaters of Anatomy (Klestinec), 277, 283 Theaters of Madness (Reiss), 580, 584, 588 theatre cultural context, 578–9 performances, 582–6, 583, 584, 585 therapeutic, 580–1, 586–91 Third Hand (Stelarc), 319 This is not a Pipe (Magritte), 50 Thompson, Peter, 587 Three Letter Plague (Steinberg), 528, 534–8 Tilley, Heather, 278–9 The Times (newspaper), 580 Tipping the Scales of Justice (Solovay), 229 ‘Todesfuge’ (Celan), 180 Tomkis, Thomas, 279 Tonietti, Tito, 78 Tonks, Henry, 176–8 torture, 547; see also violence touch anatomy and dissection, 190–1, 211, 212–16, 281–2 and compliance, 211–12, 218–20 conceptualisations of, 210 and death, 196 gentleness, 216–-18 haptic perception, 262–6, 330 moral interpretation, 203–4, 211, 217–18, 221 tactile teaching aids, 267–71 Toulmin, Stephen, 343

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Tourette’s syndrome, 456 ‘Toward a Cognitive Theory of Literary Character’ (Schneider), 474 trans-species anthropology, 469 transhumanism, 310–17, 320–1, 476 transplant technology and cloning, 615–18 ownership of body parts, 619–20, 621–2 rhetorics of care, 611–12, 618, 627 transplant tourism, 612, 620–1, 622–3 and visual art, 202–3 travelling, 263–5, 266 Trevisa, John, 415–16 Troilus and Criseyde (Chaucer), 417–18 trust, 209–12, 218–21, 278, 521–2 tuberculosis (TB), 174, 529–32 Tuke, William, 466 Turistas (film), 622 Turner, Bryan S., 179 The Turning Point (Capra), 343 Tuskegee Syphilis Experiment, 547 twins animacy, 109–12, 114–16 and eugenics, 112–13 heritability, 107–9 use in research, 104–7 ‘Two Lectures’ (Foucault), 541 Ubu-esque power, 396–7, 400–1, 402–3, 405, 484 ugliness, 166–8, 170–1, 174, 175, 176, 178; see also beauty ulcerative colitis, 94–9 Ulrike (research participant), 96 Unequal Treatment (ed. Smedley, Stith and Nelson), 546 The Unit (Holmqvist), 617 Universal Surgery (Croce), 217–18 Unsoundness of Mind in Relation to Criminal Acts (Bucknill), 579 Untitled 2006 (Margolles), 196 ‘Update on the Mechanisms, Assessment, and Management of Dyspnea’ (American Thoracic Society), 299, 301 US Supreme Court, 397, 399–401, 405 Ute (research participant), 96 Utopia (More), 512 Uys, Pieter Dirk, 527 Vandenberg, Steven, 112 Velleman, J. David, 564 Venice Biennale, 178 Verghese, Abraham, 330 Vesalius, Andreas, 212, 212, 214, 277, 278, 281–2 Vibrant Matter (Bennett), 115 Viney, William, 8, 10, 12, 616 violence and citizenship, 24, 627 elder abuse, 596–8, 605–7 institutional, 23–4, 397–8, 400–1, 405, 484 medical, 547–8 and neurocriminology, 242, 252–5 and race, 250, 255–6 subjective and systemic, 598–9, 600, 606, 607 Violence (Žižek), 599

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660 viscera autoscopy, 367–70 and formlessness, 365 and hygienism, 360–1 and narrative, 372, 483 and psychophysiology, 356–60, 361–4, 366–7 Visible Human Project, 326, 328, 331 visionary experience in Chaucer, 416–18 and mysticism, 418–23 psychology, 413–15 visual arts and the body, 19, 187, 189–97, 201–4, 371 and Christianity, 172–3 and medical education, 188 and research, 204–6 and suffering, 169–71, 174–5, 178, 180 and surgery, 197–201 see also photography visualisation, 53–4, 244–8, 252, 306–7, 332, 385 voice author’s, 140 in the clinical encounter, 339, 342–3, 562–3, 568–70 and cultural identity, 548–9 discursive construct, 124 invisibility, 279–81 and medical records, 126–7 Renaissance anatomy, 277–8, 282–5 significance, 285–90 see also narrative voice-hearing Hearing Voices Movement, 411–12 in literary texts, 278, 412, 416–18 medieval understanding, 413–15, 423 in mystical texts, 414–15, 418–22 Volatile Bodies (Grosz), 320 A Voyage Round the World (Holman), 264, 266 Waletzky, Joshua, 563 Wall Street Journal, 242 Wallace, Marjorie, 587–8 Wann, Marilyn, 227 war and cultural dominance, 546–7 interwar period, 356–7 World War I, 176–8, 177 World War II, 24 Warne, Vanessa, 262 Warner, John Harley, 126 Warwick, Kevin, 323n Waterman, Ian, 380–6, 392n Watts, Alan, 74 Weber, Max, 68, 78 Weiss, Sheila Faith, 113 ‘Welcome Developments in UK Medical Humanities’ (Hurwitz and Dakin), 37 Wells, Herbert George, 573n Western medicine and Chinese medicine, 69–70, 73, 80, 330 colonialism, 528, 530–1

5021_Whitehead et al_Part IV.indd 660

index cultural dominance, 21, 533–8, 546–54, 630–1 and dementia, 604 dualism, 343, 527 What Good Are the Arts (Carey), 428–9, 430 ‘When Law and Ethics Collide’ (Gawande), 402 White, Francis Ray, 231 ‘White Woman Listen!’ (Carby), 549 Whitehead, Anne, 308, 341, 625 ‘Who Discovered the Twin Method?’ (Rende, Plomin and Vandenberg), 112 ‘Why I Want To Be a Posthuman When I Grow Up’ (Bostrom), 314 Why the Wild Things Are (Melson), 466, 467 Wilhelm, Richard, 73–4 Wilkins, Gregory G., 466 ‘The Will to be Otherwise/The Effort of Endurance’ (Povinelli), 151 ‘The Will to Knowledge’ (Foucault), 544 Wilson, Edward O., 156 Wilson, James, 275n Wilson, Michael Lee, 406n Wilton, Jayne, 306 Winckelmann, Johannes, 169 Wistreich, Richard, 189–90, 195, 196, 303, 331 Wolcott’s Instant Pain Annihilator, 166, 167 Wolfson, Jill, 618 The Woman Beneath the Skin (Duden), 124, 125 The Womans Booke (Raynalde), 277 women, 125, 298, 316, 418, 547, 603; see also feminism wonder description, 344–5 and embodiment, 198–200, 339, 343, 351–2 vibrancy of matter, 348 ‘Wonder and the Clinical Encounter’ (Evans), 344 Wood, Joseph R. III, 396 Woods, Angela, 296, 341, 446, 455, 456 Woolf, Virginia, 330, 447–52, 457–8, 485 Woolgar, Steve, 56–7 Wordsworth, William, 433 ‘Work Without Hope’ (Coleridge), 431–2 workforce commodification, 500–1 density, 496–7 migration, 491–5, 498–9, 501–2 World Health Organisation (WHO), 220, 491, 495, 496, 497, 501–2, 527 The Wounded Storyteller (Frank), 570 Wu Jie, 71 Xhosa, 534–5, 536 Yanni, Carla, 581 Yanomamö: The Fierce People (Chagnon), 253 York Retreat, 466 Zambia, 495, 498 Zhang Taiyan, 6, 79–82 Zhu Shina, 72 Zimbabwe, 495 Žižek, Slavoj, 75–6, 587, 597, 599

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