The Edinburgh Companion to the Critical Medical Humanities 9781474400053

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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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·TAB. XXII. tt DE LARYNGOTOMIA.

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 to