The Tapestry of Health, Illness and Disease. (At the Interface Probing the Boundaries)

The Tapestry of Health, Illness and Disease

At the Interface

Series Editors Dr Robert Fisher Dr Nancy Billias

Advisory Board Dr Alejandro Cervantes-Carson Professor Margaret Chatterjee Dr Wayne Cristaudo Dr Mira Crouch Dr Phil Fitzsimmons Dr Jones Irwin Professor Asa Kasher

Owen Kelly Dr Martin McGoldrick Revd Stephen Morris Professor John Parry Professor Peter L. Twohig Professor S Ram Vemuri Revd Dr Kenneth Wilson, O.B.E

Volume 55 A volume in the Probing the Boundaries series ‘Making Sense Of: Health, Illness and Disease’

Probing the Boundaries

The Tapestry of Health, Illness and Disease

Edited by

Vera Kalitzkus and Peter L. Twohig

Amsterdam - New York, NY 2009

The paper on which this book is printed meets the requirements of “ISO 9706:1994, Information and documentation - Paper for documents Requirements for permanence”. ISBN: 978-90-420-2515-8 ©Editions Rodopi B.V., Amsterdam - New York, NY 2009 Printed in the Netherlands

Contents Introduction Vera Kalitzkus and Peter L. Twohig

Part 1

Perspectives from Literature On Waiting and Hoping in Raymond Carver’s “A Small, Good Thing” Harold Schweizer Writing Plague: Transforming Narrative, Witnessing and History Jennifer Cooke Strand by Strand: Untying the Knots of Mental and Physical Illness in the Correspondence and Diaries of Antonia White And Emily Holmes Coleman Sherah Wells

Part 2

Politics, Community and Biomedicine Diagnosing Hidden Religion in Medicine: Health, Illness and the Politics of Hope Stephan van Erp Personal and Communal Reactions to Cancer: An Interpretive Phenomenological Analysis of the Beliefs held by Charedi Jewish Breast Cancer Patients Kate Coleman The Politics and Poetics of Migrant Tuberculosis: Modelling a “Social Disease” in French Public Health Janina Kehr Woman as Mysterious Machine: Metaphor, Rhetoric and Female Sexual Dysfunction Monica Brown

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Contents The Multiple Subjectivities of Addiction It’s the Stories You Tell: Binge Drinking, Violence and Celebrity Andy Ruddock

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“I use drugs, but I am not a drug addict”: How Heroin and Cocaine Users Make Sense of Their Practice as a Healthy Behaviour 163 Maria Caiata Zufferey Abnormal Normality: Addiction, Identity and the Problem of Normal Kimmo Saaristo

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Welcome to a Probing the Boundaries Project The Tapestry of Health, Illness and Disease appears within the Making Sense of: Health, Illness and Disease project series of publications. These projects conduct inter- and multi-disciplinary research aiming to explore the processes by which we attempt to create meaning in health, illness and disease. The projects examine the models we use to understand our experiences of health and illness (looking particularly at perceptions of the body), and evaluate the diversity of ways in which we creatively struggle to make sense of such experiences and express ourselves across a range of media. Among the themes these projects explore are: • •

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the ‘significance’ of health, illness and disease for individuals and communities the concept of the ‘well’ person; the preoccupation with health; the attitudes of the ‘well’ to the ‘ill’; perceptions of ‘impairment’ and disability; the challenges posed when confronted by illness and disease; the notion of being ‘cured’ how we perceive of and conduct ourselves through the experiences of health and illness ‘models’ of the body; the body in pain; biological and medical views of illness; the ambiguous relationship with ‘alternative’ medicine and therapies; the doctor-patient relationship; the’clinical gaze’ the impact of health, illness and disease on biology, economics, government, medicine, politics, social sciences; the potential influences of gender, ethnicity, and class; health care, service providers, and public policy the nature and role of ‘metaphors’ in expressing the experiences of health, illness and disease - for example, illness as ‘another country’; the role of narrative and narrative interpretation in making sense of the ‘journey’ from health through illness, diagnosis, and treatment; the importance of story telling; dealing with chronic and terminal illness the relationship between creative work and illness and disease: the work of artists, musicians, poets, writers. Illness and the literary imagination - studies of writers and literature which take health, disability, illness and disease as a central theme

Dr Robert Fisher Inter-Disciplinary.Net http://www.inter-disciplinary.net

Introduction Vera Kalitzkus and Peter L. Twohig Making sense of health, illness, and disease – and responses to each of these conditions – takes a number of different forms, ranging from narratives generated by individuals to alternative explanatory frameworks of the root causes of illness and disease. Despite the hegemony of bio-medicine in contemporary society, there remains a vital need to accommodate other ways of interpreting, understanding and knowing health, illness or disease. These other ways of knowing may seem to be highly individualised but the response of any one individual is shaped by social and historical circumstances. A generation of scholars have explored the ways in which experiences of health, illness and disease are shaped by cultural expectations, or by politics, or through the relations of power between or among groups. As Viktor Frankl has written, “What is always involved in any response is the concreteness of a person and the concreteness of the situation in which he is involved.”1 Since it began in 2002, the Making Sense of Health, Illness and Disease conference was intended to provide a forum to promote interdisciplinary dialogue and foster international exchange. This is the fifth collection of essays to emerge from the conference, and materials from past meetings are avail-able on the conference website.2 While the value of interdisciplinary research remains contested, it is clear that health research, broadly de-fined, has adopted interdisciplinarity as a key research paradigm. We hope that the contributions to this volume bridge disciplinary boundaries and re-veal the dynamic relationship between the social world and the biomedical world. The volume is divided into three sections, reflecting different methodologies, approaches and topic areas. The first section is organized around writers and their work, using the authors’ texts themselves, as well as the tools of literary criticism and other sources. Harold Schweitzer analyses Raymond Carver’s short story, ‘A Small, Good Thing.’ Carver’s short story concerns a child in a coma, while Schweitzer’s analysis focuses upon two aspects of waiting – expectation and hope – both of which in-fuse the experiences of health, illness or disease. In her essay, Jennifer Cooke analyses Daniel Defoe’s A Journal of the Plague Year (1722) and Albert Camus’s The Plague (1947). These are well-known texts that have been profitably explored to help understand the social response to disease. Cooke, however, queries the basis of that understanding. She argues that both books provide “a medium through which traumatic events can be narrativised with imaginative impact” but that we must also critically assess the impact of these fictional narratives and their claims of authenticity. The final paper in this section by Sherah Wells turns to the journals and correspondence of

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______________________________________________________________ Antonia White and Emily Holmes Coleman. Through her analysis, Wells is able to illustrate that the language of psychoanalysis and that of religion were both vital in how these two women interpreted their experiences both of mental illness and of womanhood. The papers in the second section of the book remind the reader that to understand health, illness and disease, we need to fully consider not just pathophysiology, and the experience of different forms of injury to the body, but that we must also consider the social realm. That biomedicine is part of a broader cultural system is one of the foundational tenets of the social study of medicine. As such, many disciplines and fields can contribute to our understanding of health, illness and disease. In his essay, Stephan van Erp embarks on the adventure of leaving the discipline of theology to engage with those involved in the medical sciences. Van Erp argues that the virtue of compassion is the shared foundation of both humane medicine and Christian theology and that both medical science and theology share a concern with well-being. According to Viktor Frankl, the task of doctors does not end in helping to prepare patients for a return to their normal duties, including work, but also to assist them in making sense of their experience. That kind of counselling – Frankl uses the Ger-man term Seelsorge (pastoral care) – is a legitimate and necessary task within medicine.3 In her contribution, Kate Coleman looks at a specific religious community, charedi Jews, who hold orthodox beliefs concerning the origins of Jewish law and its observance. Using an interpretive phenomenological approach, Coleman’s analysis provides insights into the impact of charedi beliefs on health care behaviours. Her findings nevertheless show that community beliefs about the origins or meaning of disease only partially shape these behaviours. This is suggestive of the complex interplay of many factors when it comes to health behaviours. This interplay is taken up in the Janina Kehr’s contribution. The relationship between healthy bodies and the body politic is an established theme in fields such as the history of medicine, the sociology of health and illness and, as illustrated by Kehr, in critical medical anthropology. Using the tools of classical anthropology, Kehr explores the meaning of tuberculosis in contemporary France. The multiple meanings of tuberculosis have been profitably explored in a number of contexts and in different temporal periods. Building on this rich literature, Kehr illustrates how anthropological field methods can simultaneously answer different questions, from the foundations of the disease model of tuberculosis, to the social meaning attached to those who contract the disease. Her contribution also reminds us that, in an age of globalization, our interpretations of health, illness and disease profit from a ‘co-analysis’ of medical epistemology, medical practice and social discourse. The complexity highlighted by authors in this section contrasts sharply with the oft-levied description of medicine as ‘reductionistic,’ focused on the body as machine. In her essay, Monica Brown analyses the rhetorical strategies

Vera Kalitzkus and Peter L. Twohig

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______________________________________________________________ deployed to explain sexual pleasure, or the absence thereof, in the female body. She suggests that male-centeredness of biomedicine means that in discussions of female pleasure “women may be considered either silent partners in their own sexuality or shareholders in a traditionally male enterprise.” With a growing number of disease categories and the marketing of a range of pharmaceutical ‘solutions’ to problems once considered to be normal parts of aging, this is particularly rich territory, one that readily reveals the gendering of health, illness and disease. The final section of the volume focuses on subjectivity and addiction, through analyses of substance abuse and various approaches to harm reduction. Andy Ruddock uses critical media theory to analyse an alcohol-awareness campaign in Liverpool, England. Data were generated through both an online survey and a focus group and, among the findings, was that the use of alcohol was normalised through media channels and through patterns of sociability that emphasise that there is a ‘right time for drink.’ In her essay, Maria Caiata Zufferey illustrates how communities of drug users resist categorisation, even if they use drugs such as heroin or cocaine on a regular basis. Her qualitative analysis of interviews con-ducted in Switzerland demonstrates how drug users legitimise their behaviours through a variety of strategies and, implicitly, challenge an essentialist reading of the word ‘addict.’ In his essay, on the other hand, Kimmo Saaristo explores the narratives of recovering drug addicts, high-lighting how the concept of ‘addict’ is a powerful identity marker. Saaristo points out “the importance of language as a constituent in constructing experience” and explores the “identity work” of recovering addicts. The essays in this volume range across a wide number of settings, use different approaches, various forms of evidence and stress different interpretive levels. Nevertheless, the richness of these papers (and the many others that have been presented at the Making Sense conference since 2002) speaks to the continued vibrancy of interdisciplinary health research. The papers in this volume were selected for inclusion by the editors, following consultation with all the conference delegates and with input from an international steering committee. We hope that the papers capture some of the energy of the conference at which they were first presented and the dialogues that were initiated there. We also hope that they serve as a resource for future scholarship and new conversations.

Notes 1

Viktor E. Frankl, Man’s search for meaning, Simon & Schuster, New York, 1997 [1946], p. 29.

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Previous volumes include Peter L. Twohig and Vera Kalitzkus, eds., Making Sense of Health, Illness and Disease, Rodopi, Amsterdam, 2004; Twohig and Kalitzkus, eds., Interdisciplinary Perspectives on Health, Illness and Disease, Rodopi, Amsterdam, 2004; Kalitzkus and Twohig, eds., Bordering Biomedicine, Rodopi, Amsterdam, 2006; Twohig and Kalitzkus, eds., Social Studies of Health, Illness and Disease: Perspectives from the Social Sciences and Humanities, Rodopi, Amsterdam, 2008. 3 Viktor E. Frankl, Das Leiden am sinnlosen Leben. Psychotherapie heute, Herder, Freiburg, 2005 [1977], pp. 85-90.

Bibliography Frankl, Viktor E. Das Leiden am sinnlosen Leben. Psychotherapie heute. Herder, Freiburg, 2005 [1977]. Frankl, Viktor E. Man’s search for meaning. Simon & Schuster, New York, 1997 [1946]. Kalitzkus, Vera and Peter L. Twohig, eds., Bordering Biomedicine. Rodopi, Amsterdam, 2006. Twohig, Peter L. and Vera Kalitzkus, eds., Making Sense of Health, Illness and Disease. Rodopi, Amsterdam, 2004. Twohig, Peter L. and Vera Kalitzkus, eds., Interdisciplinary Perspectives on Health, Illness and Disease. Rodopi, Amsterdam, 2004. Twohig, Peter L. Twohig and Vera Kalitzkus, eds., Social Studies of Health, Illness and Disease: Perspectives from the Social Sciences and Humanities. Rodopi, Amsterdam, 2008.

Acknowledgments The editors would like to thank the contributors to this volume and all of the conference participants. We would also like to thank Rob Fisher, who established the Making Sense of: Health, Illness and Disease conference in 2002. We would also like to acknowledge the production assistance provided by Jackie Logan, Gorsebrook Research Institute, Saint Mary’s University (Halifax, NS, Canada) and of student research assistants Ashley Leopold and Doran Hassatt.

Part 1 Perspectives from Literature

On Waiting and Hoping in Raymond Carver’s “A Small, Good Thing”1 Harold Schweizer Abstract This essay proposes that two modalities of waiting, expectation and hope, are experienced by the parents of a small boy who lies in a coma after an accident, in Raymond Carver’s short story “A Small, Good Thing.” In the first temporal dimension, symbolized by the waiting room, time is to respond to human desire; here the parents’ waiting is purposeful, framed by prediction and expectation. Once the temporal markers of this realm prove illusory, the child’s parents begin to wait in a dimension beyond measurable time. Its symbolic space is the parking lot outside the hospital window where an endless stream of entering and exiting cars performs the immeasurable movements of pure duration. There where the hope of putting an end to waiting has been denied, where expectation is no longer possible, waiting turns to hoping. Hope, as Emmanuel Levinas writes, “is projected nontemporally into the domain of pure nothingness.” The waiting one does in hope is performed not in quantitative time but in the qualitative dimensions of duration. Keywords: Raymond Carver, waiting, expectation, hope, duration

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Introduction In his opening chapter of volume one of Time and Narrative, on Augustine’s Confessions, Paul Ricoeur writes that “expectation is ... the analogue to memory. It consists of an image that already exists, in the sense that it precedes the event that does not yet exist (nondum).” Since the image refers to a mental rather than factual future, Ricoeur points out that the image is thus “a ‘sign’ and a ‘cause’ of future things which are, in this way, anticipated, foreseen, foretold, predicted, proclaimed beforehand” and to which he adds in parenthesis “(note the richness of the everyday vocabulary of expectation).”2 Since waiting, apparently, is not one of the numerous synonyms of expectation, what then is the analogue of waiting? What are its synonyms? If expectation consists of an image that already exists, it must be the image that is qualified in the experience of waiting. The qualification of that image has a range in relation to its proximity to, or its synonym with, expectation, i.e. the image that exists in the experience of waiting can be thought of as gradually receding in proportion to the receding of expectation,

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______________________________________________________________ until we might say that on the extreme end of that range the image that exists in waiting is lost or forgotten. On the other side of this spectrum, in its ideal form where waiting would be merely a synonym of expectation, its image exists and precedes an event that does not yet exist but will come to be. But just as Augustine remembers God “beyond memory,”3 the waiter who has forgotten – or lost – the image that exists in his mind, waits beyond the image that exists. He waits beyond expectation in the realm of hope or despair, in a realm, beyond the merely functional aspects of expectation and thus analogously “beyond those functions of the memory which I share with beasts,” as Augustine says when he realizes that the resolution of the puzzle of time is beyond his expectation.4 Waiting in its most extreme form, moves beyond expectation in that it can no longer be represented by material or emotional or intellectual images. If this is how Augustine describes his memory of God, hope is analogously unsupported by specific images. “This is my hope and for this I live,” writes Augustine, “that I may gaze at the beauty of the Lord.”5 Hope then, whose object – “the beauty of the Lord” – is un-imaginable, requires a waiting on that end of a temporal spectrum where waiting least resembles expectation. Unlike expectation that “consists of an image that already exists,” as Ricoeur writes, the longer waiting must be sustained, the less certain its outcome, the more waiting is projected towards a realm that cannot be represented by an image. Such waiting moves towards forgetting, loss of image; it harbours within itself the possibility of hope or the possibility of despair. If waiting is suspended between remembrance and forgetting, between expectation and loss, its structure resembles that of mourning. Mourning might be a synonym of waiting. For if mourning is the work one does between memory and forgetting, waiting is the work one does between expectation and loss. This may be why waiting is not mentioned as a synonym of expectation in Ricoeur’s list. All the other words synonymous with expectation – anticipation, foresight, foretelling, prediction, anticipatory proclamation – project a definitive mental image towards the future, indeed, as Augustine defines it, the image of that projection is the future. The person, who anticipates, who foretells, who predicts, waits; but her waiting is purely temporal, purely entertained in the realm of measurable time. It is only a matter of time until the mental image fuses with a material, emotional, or intellectual equivalent in the manner “which I share with beasts...” When the image recedes, when the prediction be-comes less certain, then the waiter enters into that deeper temporality beyond expectation where waiting inclines towards hope or despair. Such a deeper waiting is required of the parents of a little boy who lies in a coma in Raymond Carver’s story “A Small Good Thing.”

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The Waiting Room Carver’s story is full of temporal markers, not only of time and hours but also of prepositions and temporal pronouns. As the father drives home from the hospital, his interior monologue of Scotty’s accident on his eighth birthday traverses the past perfect, the past and the future tenses in order to retrace an order of events, and to align them in a sequential temporality that would predict his son’s recovery: “Scotty had been hit… and was in the hospital… he was going to be all right” (282).6 When Howard arrives at home the telephone rings: Scotty’s birthday cake had not been picked up. The baker calls repeatedly throughout the story. His eerie silences and abusive invectives against what he mistakes as his customers’ irresponsibility effects an unsettling symbolic transformation. The cake, once symbol of a celebratory marking of time, becomes an ironic reminder of human powerlessness in the face of time. Time, as the unclaimed birthday cake signifies, runs its course indifferent to human anticipation or prediction, indifferent to the rituals and celebrations by which we harness time to human desire. When Howard calls the hospital, “the child’s condition remained the same; he was still sleeping and nothing had changed there” (282-83). Despite everyone’s attempts to alter the course of the boy’s mortal destiny, the time in which nothing happens from here on determines the plot of this story. “They waited all day, but still the boy did not wake up.” The child sleeps in a time that passes beyond the powers of clinical prediction, beyond the expectations of waiting, beyond meaning or measurement. The sleeping child is embodied time, literally so. The child drifts in duration; he is, in Blanchot’s words, “time indefinitely endured.”7 The unclaimed birthday cake is the representative missing sign that would have punctuated, arrested, interpreted this mere duration to which the child has been reduced. The parents wait. The hospital room assigns their waiting what Laura Tanner calls a “liminal space,” through which “we pass to some-where else.”8 “‘Go home for a while, and then come back…’” says the husband (283) as if one could leave this waiting and then return. While waiting, like the waiting room itself, is only to be passed through, waiting, as the story will tell, is to be endured. But it is not only the often unexpected, feared or futile outcome of waiting that transforms waiting from a space of instrumental passage to a space of mere existential endurance, waiting itself harbours the two temporalities, measurable time and duration, and they occur simultaneously: precisely the hour that we want to pass as quickly as possible is the hour that we must endure. The experience of waiting is thus also the experience of a time that does not yield to our will or purpose. If so, Carver’s story will intimate that precisely such experience harbours the potential for insight and unexpected intimate existential encounters.

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______________________________________________________________ The waiting room literalizes what Bergson would call a clear, precise but impersonal temporal consciousness,9 not real time but the illusion of time. Thus the doctor’s assurance, “It’s just a question of a little more time now” (285), rings only with prophetic irony, for these are to be vain projections. And the numerous other temporal announcements only indicate the impatience and impotence of desire cast into the frame of hours and minutes: Doctor will be in again shortly (284); Dr. Francis will be here in a few minutes... (284); We’ll know some more in a couple of hours… (285); We’ll know more when he wakes up (285); I was gone exactly an hour and fifteen minutes (289); Maybe I will go home for a few minutes (289); I won’t be gone long (289). All of these announcements and predictions render time measurable; all of them attempt to curtail time, to subject it to human desire. But as the narrative progresses, time simply runs its course: the parents wait, the doctors come and go. “In an hour, another doctor came in. He said his name was Parsons from Radiology. He had a bushy moustache. He was wearing loafers, a Western shirt, and a pair of jeans” (286). The gratuitous listing of the details of the doctor’s attire conveys the typical visual fixation experienced by the person who waits, whose strained concentration on an invisible outcome in time transfers to the visible details of her surroundings. Numerous entrances and exits by the parents, doctors, nurses, lab technicians, and orderlies punctuate the boy’s slipping into an intimate, immeasurable time. All of them perform in their activities the temporal increments by which the child’s otherworldly destination, they hope, could be reeled back into their world: He moved to the side of the bed and took the boy’s pulse. He peeled back one eyelid and then the other. Howard and Ann stood beside the doctor and watched. Then the doctor turned back the covers and listened to the boy’s heart and lungs with his stethoscope. He pressed his fingers here and there on the abdomen. When he was finished, he went to the end of the bed and studied the chart. He noted the time, scribbled something on the chart …. (284) The laconic brevity of the sentences, and the detailed listing of the doctor’s examination relieves the parents, for a time, from their worry about the

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______________________________________________________________ development of the boy’s condition. The measured, timed, and sequential succession of Carver’s sentences, as of the doctor’s actions, simulate a world of order and predictability. Likewise, the doctor’s appearance – “handsome, big-shouldered … with a tanned face” and his “three-piece blue suit, … striped tie, and ivory cuff links” are welcome visual distractions – messages as if from a world impervious to death – in the midst of deepening dread. By contrast with such temporary markers of reassurance, the doctor’s subsequent interpretation of the boy’s condition reveals, however, his profounder sense of uncertainty and the disjuncture between their and the boy’s temporal realms: “‘He’s all right… . he could be better…. I wish he’d wake up. He should wake up pretty soon’” (285). Again, as in the father’s drive home from the hospital, the permutations of the temporal modes of the verb to be – he is, he could be, he should be – indicate the doctor’s difficulties in locating the child’s being. In the baker’s insistent calls that the birthday cake is ready to be picked up, the permutations of the modes of the verb to be have been extended to that indicator of eminent futility: the past subjunctive. Scotty should have been eight years old, the birthday cake should have been picked up. But the eight candles and the outstanding debt for the cake keep measuring a time that for the boy no longer passes. His coma has removed the child into a wholly other temporal realm that no one can enter. Only the bath that Ann and Howard hastily take when each of them returns separately to their house might perhaps have intimated a potential for accessing an elusive, otherworldly temporal location similar to the boy’s sleep. The earlier title of the story, “The Bath,” implies the mysterious significance of the bath; its temporality would have been closer to that of the boy’s endurance: placid, leisurely, fluid compared to the parents’ strained and restless waiting in the waiting room. But neither Ann nor Howard can linger in the contemplative, reflective state the bath would have allowed, despite Howard’s desire that Ann “just sit for a while and rest” (289). For the parents, waiting is still a matter of time, a passage to be traversed as quickly as possible. 3.

The Parking Lot In his brief meditation, “Poseidon and Company,” Carver ponders felt and thought time. A boy lies languidly at the ocean’s edge overhearing, afar off, the watery voices of the other boys. The boy drifts into daydreaming: He lay again on his stomach and turned his face a little to one side, waiting. / On his back the sun slipped away and a chill broke over his legs and shoulders. Tonight he would lie wrapped in his cover and remember these few

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______________________________________________________________ minutes of felt time, day fading. It was different than standing in Naiad’s cave up in the hills, someone holding his hand under the water that trickled steadily out of the crack in the rock. It had been dripping for no one knows how long, they said. Different too than wading in the surf up to his knees, feeling the strange pull. That was time too, but not the same. ... every afternoon he lay on his stomach up over the sea and waited for the change, the prickly passage of time across his back.10 All of the prophetic undertones of this remarkable early piece reverberate in Carver’s later story “A Small, Good Thing,” mostly perhaps the implications of the boy’s separateness, his secret hiding from the shrieking children nearby, and finally his sister’s voice behind him, asking “Why didn’t you come home?” The boy knows at once the two temporalities, time and duration: the trickle of measurable time in Naiad’s cave, the strange pull of mortal time in the receding waters on the beach, and the difference of that other, vaster time whose coming – if only for a few minutes – is felt not known, and during which time, as Carver’s fragment also implies, one is fundamentally unreachable by others. “‘There you are,’ she said, ‘I had to walk all this way for you! Why didn’t you come home?’” 11 The expectation that Scotty will awaken from his coma and come home, the confidence of the doctors, the anticipation of the parents, all take place in that authoritative temporality that Newton had called mathematical time and that measurably trickles in water or pulls with the ebb and flow of the tides. But as the boy’s symptoms remain unchanged, the parents slowly move into a waiting whose end is no longer defined by prognosis and expectation. ‘But he’s out of any real danger?’ Howard said. ‘You said before he’s not in a coma. You wouldn’t call this a coma, then – would you, doctor?’ Howard waited. He looked at the doctor. No, I don’t want to call it a coma,’ the doctor said and glanced over at the boy once more. He’s just in a very deep sleep. It’s a restorative measure the body is taking on its own. He’s out of any real danger, I’d say that for certain, yes. But we’ll know more when he wakes up and the other tests are in,’ the doctor said. ‘It’s a coma,’ Ann said. ‘Of sorts.’ ‘It’s not a coma yet, not exactly,’ the doctor said. ‘I wouldn’t want to call it a coma. Not yet, anyway.’ (285)

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______________________________________________________________ The doctor’s initial evasions and denials cannot conceal his forebodings. Ann’s sudden rejoinder, “it’s a coma,” hastily but only partially withdrawn, permits the doctor’s own admission, equally unintentional, that what all are waiting for might precisely be the unexpected, the feared. If the doctors’ assurances were once offered entirely within the dimensions of measurable time – it being just a matter of time until the child would wake up – his qualifications, “not yet,” “It is not a coma yet...,” deny closure. Now waiting is open, potentially unending, no longer to be passed through but to be endured. The suffering of the child in a coma is no longer what Maurice Blanchot calls “a measured suffering” that can be “brought back into our grasp and assumed, recaptured and even comprehended in the patience we become in the face of it.” The boy’s coma has removed him into a suffering that has lost this measure: “Suffering is suffering,” writes Blanchot, “when one can no longer suffer it, and when because of this non-power, one cannot cease suffering it. ... There, the present is without end, separated from every other present by an inexhaustible and empty infinite, the very infinite of suffering, and thus dispossessed of any future. ... Suffering has simply lost its hold on time, and has made us lose time.”12 Blanchot’s comments on this immeasurable suffering seem not only pertinent to the nature of a coma, endured as it must be in an empty infinite, but also to Scotty’s parents who must begin an unceasing suffering in their realization of the gravity of their child’s condition. As their child drifts towards death, Ann and Howard are like their child “... delivered over to another time” as Blanchot calls it, “to time as other, as absence, as neutrality; precisely to a time that can no longer relieve (racheter) us, that constitutes no recourse. A time without event, without project, without possibility ... a time neither abiding nor granting the simplicity of a dwelling place (demeure).”13 We dwell in the hour that passes within the scope of our expectations. In that hour we are patiently one with the time that passes, giving permission to our own passing within it; such a time readily finds its spatial equivalents in waiting rooms, bus stations, hotel lobbies. But in that time whose end we no longer foresee, and whose present is therefore infinite, we are homeless. When Ann and Howard stand gazing out into the night, down at the parking lot far below their window, the dwelling place of time, once contained by expectations and institutional assurances, now expands to the infinity of that other time that can no longer relieve us from time. Waiting endured in that other time, is not a matter of time; such waiting cannot be accomplished in the doctor’s projections that “‘We’ll know some more in a couple of hours… .’” (285); nor does waiting in that other time have the simplicity and exteriority of “‘exactly an hour and fifteen minutes’” (289) that Howard claims he was gone before he returned to his son’s bed. These measurements ought to shelter us, precisely, from the

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______________________________________________________________ immediacy and intimacy of that immeasurable other time that we enter when references to hours and minutes, predictions and diagnoses, no longer serve to exteriorize our waiting. When Ann intuits her husband’s need “to be by himself for a while, not have to talk or share his worry for a time” (289), he descends to the empty, infinite plain of duration, a time without event, without project, without possibility, a time neither abiding nor granting the simplicity of hours and minutes, a time where one is separate, unreachable by others, like the boy in Carver’s fragment who does not hear his sister’s voice calling him home. And yet, paradoxically, it is in her intuition of her brother’s separateness that the sister knows her brother most closely, just as it is in her intuition of Howard’s need for privacy that Ann moves closer to him. The paradox of closeness or intimacy then is in the suggestion of a proximity that can only be attained without space and measure and limits, as indeed such intimacy is also the mark of extreme suffering, which is likewise without space and measure and limits as it is endured in the most intimate proximity. Since intimacy, then, seems attainable only in duration, not in that functional time that requires and permits our self-externalization, duration, as Emmanuel Levinas (paraphrasing Bergson) points out, “is experienced by a descent into self.”14 The time that is here allowed for Howard’s descent into his self commences an unintentional waiting, a waiting that is no longer for something. If Ann and Howard will have to wait forever, they will have to wait in that paradoxical time that Blanchot designates as the unbearable present: “a present without end and yet impossible as a present.”15 There where the hope of putting an end to waiting has been eroded, where expectation is no longer possible, Ann and Howard must endure a spaceless, undefined, unquantifiable waiting. While it cannot be expectation that sustains such waiting because expectation is entertained in a quantifiable time, hope, as Levinas writes, “is projected nontemporally in-to the domain of pure nothingness” (67). Hope is qualitative, an endurance of intimacy, an inward waiting, an intensity rather than an extensity, not determined by prediction and anticipation, not displaced into hours and minutes and their spatial and institutional equivalents. Like despair from which it is often only thinly divided, hope is endured, felt rather than known in the depths of self; there where Howard is “by himself for a while, not [having] to talk or share his worry for a time.” The temporal indicators “for a while” and “for a time” mentioned in Howard’s descent into himself, refer to a time that runs its course eminently outside of him and without him, like the drip of water in Naiad’s cave, like the ebb and flow of the ocean tides. During his brief absence from the official coordinates of the time in which doctors come and go, in which one waits for something, Howard is enduring; he is the time that passes. It is in this radical

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______________________________________________________________ existential reduction that Howard is intimately aligned with Scotty’s comatose drifting; both are open unto infinite lack, both share, as Maurice Blanchot writes in a related context, “the empty intimacy of time.” If Blanchot calls such waiting affliction we may call hope an affliction. One has expectations but one suffers hope. “Through affliction,” writes Blanchot, “we endure ‘pure’ time, time with-out event, without project and without possibility; a kind of empty perpetuity that must be borne infinitely. ... Deprived of ourselves, deprived of the I upon which we naturally lean, deprived of the world that in normal times exists in our place and disburdens us of ourselves, we are time, indefinitely endured.”16 Such afflicted waiting comes about through the renunciation of the superficial consciousness of time. “‘Maybe,’” says Ann “‘if I’m not just sitting right here watching him every second he’ll wake up and be all right. You know? Maybe he’ll wake up if I’m not here’” (289). With-drawing her vigilance, she thinks, might call the child forth, but rather it calls her to the child, connects her more intimately with her child, as if in such renunciation of time and consciousness she might intuit his being outside of consciousness, in that realm where nothing needs to be waited for, where waiting opens unto the domain of pure nothingness. In their most private moments thus, as when “Ann walked to the window and looked out at the parking lot” (288), Howard and Ann enter the most intimate dimensions of waiting, a waiting momentarily released from its strained intentionality, calibrated to their child’s drifting, marked by the loss of measurable time, sustained by their suffering of hope. In Carver’s blandly quotidian world, such waiting beyond the dimensions of time and beyond what can be waited for, such waiting in the depths of self is endured in the gaze out of the hospital window onto a parking lot. “It was night, and cars were driving into and out of the parking lot with their lights on” (288). The night scene outside the window reveals the detached, indifferent, immeasurable superfluity of existence. In the cars “driving into and out of the parking lot,” life is generic, mindlessly in motion – markedly unlike the purposeful comings and goings of doctors, nurses, and orderlies. Eventually, Ann and Howard too will join this fluid, blind movement of all things when they leave the hospital after their son’s death. From Ann’s distant perspective at the window, the cars appear anonymous, sliding noiselessly in and out of the parking lot, performing a silent procession of lights, a ritual of endless comings and goings. Ann looks into a realm devoid of human dimensions of time. The cars below her window perform the fluid, circular movements of a Schopenhauerian time as blind will, in which nothing happens or changes, in which cars will ever enter parking lots of hospitals, a time older and other than the time of the doctors’ predictions or the parents’ expectations. It is in this encounter with what a phenomenologist would call a plane of emptiness, and which emptiness also

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______________________________________________________________ implies the despair thinly held back, that Ann “knew in her heart that they were into something now, something hard” (288). Gazing out of the hospital window, Ann “saw a big car stop in front of the hospital and someone, a woman in a long coat, get into the car. She wished she were that woman and somebody, anybody, was driving her away from here to somewhere else, a place where she would find Scotty waiting for her. …” (288). The stopping car momentarily interrupts and humanizes the anonymity of the night scene outside the hospital. Ann’s inversion of her and her son’s roles projects each of them into a time where all waiting would be fulfilled. She has momentarily saved him from his aimless drifting in the vast fluid motions of duration and assigned him a firm destination where he waits for her. She has imaginatively seized the pure duration in which he was drifting, in order to emplot his enduring, to give it meaning and measure, in order to make his sleep come to an end. Driven by “somebody, anybody … somewhere else, a place where she would find Scotty,” she has undertaken a mythic passage to an otherworldly realm. Her desire is for a closure of pre-linguistic, pre-temporal dimensions, to collapse her and her son’s times into a time not yet bifurcated into mother and child, life and death, a time where no one would have to wait for the other, where he would “let her gather him into her arms” (288), as if he was profoundly reunited with his mother, as if he was unborn in his mother’s womb. The time of such desire is a time before time, it is the suspension of time. 4.

The Cathedral In the opening paragraphs of the story where Ann enters the bakery to order the birthday cake, Carver’s sparse descriptions of the baker’s uncared for appearance and lethargic movements convey a person suffering from chronic depression: “He let her take her time. He’d just come to work and he’d be there all night, baking, and he was in no real hurry” (280). In the tedium of his work, the baker will later tell Ann and Howard, he endures time as endless, repetitive, for to be childless, he says, is “To repeat the days with the ovens endlessly full and endlessly empty” (301). For to be childless, he implies, is to live in the indifference and superfluidity of mere endurance, a time rendered blind and futile by “hundreds, no thousands” of birthdays and cakes, a time without markers or meaning, a plentitude of nothingness. It is in the context of depletion and loss, of childlessness and the death of a child, that the ending of the story must itself appear as the unexpected end, that which could not have been waited for. After the death of their child, Ann and Howard, having first driven home, then driven to the bakery to confront the backer about his phone calls, find themselves unexpectedly sharing a meal with the baker under the “high pale cast of light in the windows” (301). In a story of so much waiting, such an ending – as

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______________________________________________________________ perhaps in any good story – could not have been waited for other than in that radical openness that constitutes that deeper, hopeful waiting that one attains after having waited in vain. The unexpected, transformative qualities of Carver’s ending all seem suggested in Simone Weil’s notion of faithful waiting, and which she illustrates through a paraphrase of the biblical parable of the absent landlord: Faithful waiting, she writes, is per-formed “while the master is absent”; upon his return the faithful “is ready to open the door to him as soon as he knocks. The master will then make his slave sit down and himself serve him with meat. Only this attention, this waiting, can move the master to treat his slave with such amazing tenderness.”17 These mystical, transformative, and metaphoric qualities of the story’s ending – though not played out in the same roles or parts – may have been initiated when Ann walked past the black family back in the hospital who was “in the same kind of waiting she was in” (291). Ann is tempted to ask the older woman whose lips were “moving silently” to share her words. But the allusions to prayer – the passage is predictably deleted in the earlier draft edited by Gordon Lish – suggest metaphysical realms that will remain only implicit – but powerfully so – and thus come to bear in the story’s last scene where the parents and the baker come together on a plane altogether removed from the world of time: “They talked on into the early morning under the high pale cast of light in the windows, and they did not think of leaving” (301). When Howard, back in the hospital room, gets up and “went over to stand beside her at the window” (288), the redemptive closure in the bakery seems yet inconceivable. But Howard’s and Ann’s descent into a waiting beyond the certainties of expectation or beyond the fears of premonition has here begun. He and his wife have descended into that intimate, infinite realm of hope in which each, precisely because within his and her innermost self, is revealed to the other: “They both stared out at the parking lot. They didn’t say anything. But they seemed to feel each other’s insides now as though the worry had made them transparent in a perfectly natural way” (288). Then predictably, “The door opened and Dr. Francis came in. He was wearing a different suit… .” But the jolt in the movement of the narrative from a deeper to a surface temporality, from inside to outside, cannot dispel Howard’s and Ann’s encounter with an intimate, inward sense of a mutuality that is attained in the shared endurance of hope. The bakery, whose “high pale cast of light in the windows” recalls Carver’s story “Cathedral,” extends this mutuality in which the plain of emptiness has suddenly been populated, in which the infinite lack is suddenly filled – not by what was expected, or waited for, but by mutual revelations of inwardness. Here in the bakery, then, as symbol of such plentitude, the empty planes of duration are gathered up, structured, and humanized by an impromptu celebration. Scotty’s birthday cake is replaced by a symbolically

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______________________________________________________________ wholesome bread “heavy” and “rich;” the baker’s sudden elated deliberateness lifts out of oblivion one of those “hundreds, no thousands” of unclaimed celebrations in which he had lived in his own plain of emptiness and mourned his own lack; his servings of cinnamon rolls, “the icing still running,” now arrests the futile repetitions of time where “ovens are endlessly full and endlessly empty.” Carver’s story ends at the felicitous moment of an unexpected, unaccountable plentitude. Once the baker has served Ann and Howard their rolls and butter, “He waited. He waited until they … began to eat” (301) and the plentitude of their meal intimates a newly attained temporality filled by mere being and all the other words designating the same: intimacy, immediacy, mutuality. All of which seems substantiated when the baker “waited until they began to eat,” for this waiting now seems to be a time that is always already fulfilled, as if in a time, as Levinas puts it, that was “subordinated to eternity, to a present which neither passes nor can be gone beyond...” a “timeless ideality which exists unmoving above the immediate temporality of human patience, in the substitution of dialectical rigor for ‘incompressible,’ unavoidable, insurmountable durée.”18 The baker waited until they began, and yet the time of his waiting – and this is not a function of brevity, not a matter of time – does not have to be endured either in hours or minutes or in the solitude of self. Ann’s desperate projection of a time before its divisions into life and death, or mother and child, or self and other, has here, in Carver’s tenderly implicit style, come true. If the sharing of a meal is the most ancient, intimate, and communal way of being in time – its ideality consists in its complete, communal human embodiment that leaves no remainder lost or waiting.

Notes 1

The author gratefully acknowledges that an earlier, shorter version of this essay was published in Journal of the Short Story in English, ed. Vasiliki Fachard, 46 (Spring 2006). 2 Paul Ricoeur, Time and Narrative, trans. Kathleen McLaughlin and David Pellauer, vol. 1 (Chicago: University of Chicago Press, 1984), 11. 3 Augustine, Confessions, trans. R. S. Pine-Coffin (Middlesex: Penguin, 1961), 19. 4 Ibid., 25. 5 Ibid., 22. 6 All references in parenthesis refer to Raymond Carver, Where I’m Calling From: New and Selected Stories (New York: The Atlantic Monthly Press, 1988). 7 Maurice Blanchot, The Infinite Conversation, trans. Susan Hanson (Minneapolis: University of Minnesota Press, 1993), 121.

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Laura Tanner, Lost Bodies: Inhabiting the Borders of Life and Death (Ithaca: Cornell University Press, 2006), 65. 9 Henri Bergson, Time and Free Will, trans. F.L. Pogson (Mineola, NY: Dover Publications, 2001), 129. 10 Raymond Carver, Call If You Need Me: The Uncollected Fiction and Other Prose (New York: Vintage, 2001), 156. 11 Ibid., 157. 12 Blanchot, 44. 13 Ibid., 44. 14 Emmanuel Levinas, God, Death, and Time, trans. Bettina Bergo (Stanford: Stanford University Press, 2000), 55. 15 Blanchot 44. 16 Ibid., 121. 17 Simone Weil, Waiting for God, trans. Emma Craufurd (New York: Perennial Classics, 2001), 63. 18 Emmanuel Levinas, Entre Nous: Thinking-of-the-Other, trans. Michael Smith and Barbara Harshav. (New York: Columbia University Press, 1998), 138.

Bibliography Augustine. Confessions. Trans. R. S. Pine-Coffin. Middlesex: Penguin, 1961. Bergson, Henri. Time and Free Will. Trans. F.L. Pogson. Mineola, NY: Dover Publications, 2001. Blanchot, Maurice. The Infinite Conversation. Trans. Susan Hanson. Minneapolis: University of Minnesota Press, 1993. Carver, Raymond. Where I’m Calling From: New and Selected Stories. New York: The Atlantic Monthly Press, 1988. _________. Call If You Need Me: The Uncollected Fiction and Other Prose. New York: Vintage, 2001. Levinas, Emmanuel. God, Death, and Time. Trans. Bettina Bergo. Stanford: Stanford University Press, 2000. _________. Entre Nous: Thinking-of-the-Other. Trans. Michael Smith and Barbara Harshav. New York: Columbia University Press, 1998.

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______________________________________________________________ Tanner, Laura. Lost Bodies: Inhabiting the Borders of Life and Death. Ithaca: Cornell University Press, 2006. Ricoeur, Paul. Time and Narrative. Trans. Kathleen McLaughlin and David Pellauer. Vol. 1. Chicago: University of Chicago Press, 1984. Weil, Simone. Waiting for God. Trans. Emma Craufurd. New York: Perennial Classics, 2001.

Note on Contributor Harold Schweizer is John P. Crozer Professor of English Literature and chair of the department of English at Bucknell University. His most recent publications are on the medical humanities and on the experience of waiting. He is currently editing a volume of Aperçus (Bucknell University Press) entitled, “The Patient.”

Writing Plague: Transforming Narrative, Witnessing, and History Jennifer Cooke Abstract Daniel Defoe’s Journal of the Plague Year and Albert Camus’s The Plague serve as the narratives through which to explore the way plague comes to infect and affect the structure of plague narratives. Following on from this, the central figure of the witness who survives plague to tell their tale is examined, alongside the arguments of Shoshana Felman in her discussion of this phenomenon and its significance in Camus’s text. The way in which both Defoe and Camus draw upon historical events and weave them into fictive narratives is the stimulus to some closing comments upon the roles of historical and literary discourses and their respective abilities to render imaginable the extreme loss of human life engendered by events such as plague or the Holocaust. Keywords: plague; Daniel Defoe; Albert Camus; witnessing; Shoshana Felman; history; narrative. Plague left Western Europe in 1720, never to return again in epidemic proportions, yet its legacy has survived to be reworked and reimagined in fiction. The intersections of two plague texts, Daniel Defoe’s A Journal of the Plague Year (1722) and Albert Camus’s The Plague (1947), reveal a series of shared symptoms in the style and structure of plague writing; this in turn suggests a route for formulating how fiction can be in a unique position to address the trauma of enormous death counts and fear of infection resulting from epidemic outbreaks or other historical events of mass destruction and imperilment of human life. Defoe’s Journal is a fictional account of an historical occurrence, claiming, as it does, to be an eyewitness report of the happenings in London during 1665, the year of England’s last epidemic plague outbreak. The narrator, identifying himself only as H.F., describes his employment as “saddler” and, while his brother flees the infested capital, he, for a mixture of personal, business and religious reasons, decides to stay.1 The account is purportedly the result of his “Memorandums,” in which he had committed to paper his observations and opinions of London throughout the plague.2 Camus’s The Plague, in contrast, is told through the eyes of Doctor Bernard Rieux during a fictional plague epidemic that Camus sets in the troubled decade of the 1940s, in the French African colony of Oran.3 This apparently greater remove from an historical

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______________________________________________________________ plague outbreak, however, does not make the novel’s relationship to issues of witnessing any the less significant. Buboes are what make plague famous: the enlarged lymph glands, in those most intimate and sensuous of areas, the neck, the armpit, and the groin, are what distinguish the disease so gruesomely. Buboes force the victim into crooked, misshapen stances to relieve the pressure and lessen the pain: the legs are splayed, the arms uplifted, the head turned away to one side. Protruding unmistakably, they declare the disease of the sufferer to be written on the body, there for all to read. To look at and touch, the bubo is a hard knot which can vary in size from a nut to an orange, sometimes blackening, sometimes breaking and suppurating noxious pus. Buboes cannot be removed; they are an inflamed part of the body, but they can sometimes be lacerated, a common practice in 1665 because a broken bubo was thought to betoken a possible recovery. Defoe described the suffering caused by these diseased growths: the swellings which were generally in the Neck, or Groin, when they grew hard, and would not break, grew so painful, that it was equal to the most exquisite Torture; and some not able to bear the Torment, threw themselves out at Windows, or shot themselves, or otherwise made them-selves away, and I saw several dismal Objects of that Kind: Others unable to contain themselves, vented their Pain by incessant Roarings, and such loud and lamentable Cries…4 “Exquisite”: exact, precise, perfect at hitting the mark; pain, like food, can have a certain delicacy and purity. The descriptions provided by H.F. have a noisy physicality which echoes through the excerpt above. Raymond Stephenson argues that portrayals such as this are employed by Defoe as part of a consciously developed literary technique for specifically stimulating the visual and aural imagination of his eighteenth-century readers rather than appealing to their intellect.5 Indeed, the London of H.F. resounds to “screeching and crying,”6 “the shrieks of Women and Children,”7 “grievous Cries and Lamentations,”8 and “People raving and distracted”9 throughout its pages. This cacophony, Stephenson believes, coupled with the continual presentation of grotesque images, is intended “to create a picture of physical mutilation and corruption which will horrify and disgust the reader with its references to partially decayed human flesh, pain, agony, and running sores.”10 Episode by grisly, clamorous episode, Defoe builds a London in which the sounds, the fetor, and the symptoms of disease rise tangibly through his writing. Bubonic plague is not just characterised by buboes alone: the body’s attempt to flush out the bacteria which is gathering in the lymph glands

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______________________________________________________________ naturally results in a high running fever. This medical fact is incorporated by both Defoe and Camus, the former referring often to the “Rage of the Distemper”11 which afflicted the London sufferers and the latter making the fight of two closely-followed deaths, those of Othon’s son and Jean Tarrou, centre upon their struggle against a rising temperature as opposed to the pain and disfigurement caused by the buboes themselves. These images, as Stephenson rightly says, are designed to horrify the reader. Of further note is how within both texts, if in differing ways, the very writing is infected by the symptoms of plague that it describes: the fever of Defoe’s characters, for instance, is apparent in the agitation and restlessness of the prose. In the following episode recounted by H.F., a typically nameless man has his whole story given in one long and breathless sentence, the high running fever literalised in his delirious, repetitive running amok and the rising tide-waters of the river Thames: I heard of one infected Creature, who running out of his Bed in his Shirt, in the anguish and agony of his Swellings, of which he had three upon him, got his Shoes on and went to put on his Coat, but the Nurse resisting and snatching the Coat from him, he threw her down, run over her, run down Stairs and into the Street directly to the Thames in his Shirt, the Nurse running after him, and calling to the Watch to stop him; but the Watchmen frightened at the Man, and afraid to touch him, let him go on; upon which he ran down to the Still-yard Stairs, threw away his Shirt, and plung’d into the Thames, and, being a good swimmer, swam quite over the River; and the Tide being coming in, as they call it, that is running Westward, he reached the Land not till he came about Falcon Stairs, where landing, and finding no People there, it being in the Night, he ran about the Streets there, Naked as he was, for a good while, when it being by that time High-water, he takes the River again, and swam back to the Still-yard, landed, ran up the Streets again to his own House, knocking at the Door, went up the Stairs, and into his Bed again; and that this terrible Experiment cur’d him of the Plague, that is to say, that the violent Motions of his Arms and Legs stretch’d the Parts where the Swellings he had upon him were, that is to say under his Arms and his Groin, and caused them to ripen and break; and that the cold of the Water abated the Fever in his Blood.12

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______________________________________________________________ This story-in-a-sentence is recounted by Defoe not because he believes in the curative function of this “extravagant Adventure,” since he admits “I do not think [it] very possible,” but instead “to confirm the many desperate Things which the distress’d People falling into, Deliriums…were frequently run upon.”13 The forcibly quickened breathing which the plethora of commas demands, the garrulous and excessive explanatory asides, the repetition of “run,” “ran” and “running,” and the extreme overall length of the sentence, with its confusion of tenses, all reinforce a feeling of incoherence, of the frantic heightening fever and panic induced by plague symptoms. The writing “rises” with the fever it describes. Rising, in fact, characterises many plague symptoms and events: blistering buboes rise upon the smooth surface of the skin; temperatures and death tolls rise; the miasmas that many physicians in Defoe’s day believed were carrying plague arose from stagnant marshes and rotting rubbish heaps. The feelings of pain can be diverse, but the body’s reactions to it and the language used to represent it can sometimes partake of the repetitive and the mundane: universally, fever burns, exhausts, causes restlessness and thirst. This does not have to be limiting, however, since the lexicon of suffering and illness is at least general and shared. Thus, in Camus’s description of the final hours of Othon’s son, whose childish frame has been the disappointing testing-ground for a newly developed vaccine, the reactions of his little body are familiar, if exacerbated due to the nature of the disease and the approach of death: When the burning tide struck him again for the third time and raised him [le souleva] up a little, the child, bent double and throwing back his blanket, fled to the end of the bed, wildly shaking his head from side to side, in terror of the flame that was burning him. Large tears rose [jaillissant] beneath his swollen eyelids and began to flow down his pallid face; when the crisis was over, exhausted, tensing his bony legs and his arms from which in fortyeight hours the flesh had dropped away, the child assumed the grotesque pose of a crucified man in the ravaged bed.14 The fever is a “tide” that raises the body; afterwards the child assumes a Christ-like pose which intimates, falsely in this instance, that he may possibly rise again, saved, while at the same time underscoring his role as the sacrificial victim of medical science’s failure. The drawn-out death of this child, watched closely by nearly all the major characters in The Plague, plays a symptomatically central role in the novel: the fever that breaks his small body also emotionally breaks Rieux, who loses his usual medical composure,

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______________________________________________________________ and shatters the hopes of another doctor, Castel, whose vaccine has only prolonged the suffering. The moment marks a breaking point too for the stern Jesuit priest, Father Paneloux, as he reaches a personal and religious crisis which prompts Rieux to comment: “from the day when he had to watch for hours while that child died, he seemed changed.”15 As with Defoe, the relentlessness of the plague is written into the language and is apparent in the rising fever which seems to possess the child, causing his desperate physical movements and the tears that rise to his eyes. A correspondence between disease symptoms and the very writing of disease are distinctive features of our two plague texts. More specifically, the buboes which push their way up onto the body of the plague victim have their corollary on the body of the text, where as a matter of inevitability there are a variety of small, almost self-contained narrative outbreaks, describing victims whose appearance is necessarily brief and terminal. Plague interrupts character continuity and development; its symptoms erupt, rupturing relationships, separating characters whose lives and stories were entwined. Hence it is that Camus, whose central cluster of protagonists form a supportive team of health workers, still has to lose a number of them to plague. Even more symptomatic than the loss of major characters, however, are the smallest stories, almost fulfilling the description of “flash fiction” given by James Thomas in his editorial comment for a collection of very short stories.16 These “flash” tales are defined by Thomas as between roughly two-hundred and fifty to seven-hundred and fifty words, but in the context of plague, and especially in Defoe, these bubonic narratives can be even shorter, breaking out over the body of the text and erupting from the surface of the narrative in a way that could be considered “episodemic” in the light of their disease-context and sporadic dispersion. Remarkably, Defoe practises flash fiction avant la lettre, an historical precedent which is not recognised by Thomas. The episodemic nature of the writing in the Journal is striking: the surface of the narrative is rumpled by the bumpy observations of H.F., who, during his walks around England’s capital, collects stories and tales in an attempt to trace the sickness of London, as a doctor might gather the symptoms of a patient. These ‘episodemics’ can even be as swift as a paragraph: A Family, whose Story I have heard, was thus infected by the Father, and the Distemper began to appear upon some of them, even before he found it upon himself; but searching more narrowly, it appear’d he had been infected some Time, and as soon as he found that his Family had been poison’d by himself he went distracted, and would have laid violent Hands upon himself, but was kept from

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______________________________________________________________ that by those who look’d to him, and in a few Days died.17 The tragic brevity of this narrative, so common to the episodemics in both Defoe and Camus, is in keeping with the untimely interruption of life; the story, like the lives it describes, is almost incompletely rendered: it is cut off, cut short. The Plague follows the Journal in its use of this stylistic symptom. A selection of Camus’s episodemics includes: the introduction and quick demise of the concierge; the pathetic death of Othon’s son; the story of the cat-spitter; and the fate of the Opera singer who dies on stage at the moment of his triumphant final song as Orpheus. This effect can be seen too in Mary Shelley’s plague novel The Last Man (1826), which has a great number of smaller stories that cluster around the edges of the main development of events.18 Fragmentary, episodemic writing within a novel breaks up the continuity of the narrative and embodies the fragmentation of society, family, politics and health which a plague outbreak causes: as I have been arguing, writing about plague produces particular stylistic and narrative symptoms. This kinship between diseased health and unhealthy narratives has been highlighted by Steven Marcus in his reading of Sigmund Freud’s case study of Dora. He notes how a suspected hysteria patient was found by the famous psychoanalyst to be suffering instead from a treatable medical condition, which Freud had deduced from her ability to tell her story “perfectly clearly and connectedly.”19 Marcus is led to conclude that “illness amounts at least in part to suffering from an incoherent story or an inadequate narrative account of oneself.”20 Although Marcus and Freud are identifying narrative fragmentation as indicative of specifically mental illness, the idea that incomplete, fragmentary or, in Marcus’ words, “in-adequate” narratives are in some sense a symptom of disease is richly suggestive of how the presence of disease in the body may be seen to result in a diseased narrative, suffering in words what the body suffers in symptoms. This is not to assume, however, that fragmentation always necessarily implies a lack or a loss: responding to the Sibylline fragments upon which Mary Shelley’s plague novel, The Last Man, is purportedly written, Sophie Thomas points out that fragmentation can quite conversely, in the context of plague, be a form of plenitude: Reduction is, paradoxically, accomplished through multiplication, insofar as there is a potentially infinite reproduction of the very condition that ostensibly ushers in closure. The plague, for example, brings on the destruction of man, his (shall we say) progressive diminishment, at the same time as it is a figure for the forces of proliferation. It

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______________________________________________________________ manages this through its uncontainability, through its capacity to reproduce its destructive effects.21 The spread of plague, the effect it has upon people and institutions, and the lives it takes, actually causes a proliferation of what could be considered the symptoms of a plague text, the episodemic narratives. More deaths, more stories; plague disseminates its effects, but it is a strange plenitude indeed. While these are the stylistic and structural effects of plague writing, the other figure of significance within both Camus and Defoe is the witness, the one who survives the plague. Defoe eventually closes his Journal with the following short ditty: “A dreadful Plague in London was, / In the Year Sixty Five, / Which swept an Hundred Thousand Souls / Away; yet I alive!”22 It is the “I alive” which allows Defoe to posit H.F. as an eyewitness, and Camus to do the same with his narrator-survivor, Rieux. Mary Shelley, too, uses this narratorial device, with her witness believing himself to be the last survivor of the human race. These texts are, in effect, fictional testimonies, and attest to the centrality of the position of the witness in accounts of plague. As Elana Gomel has noted of H.F., such a plague witness has a “privileged textual position” which “grants him immunity.”23 This immunity provides the protection of telling plague instead of catching it, yet stands as the token that plague is not finished: H.F. and Rieux’s roles are only exhausted when plague is too. While Defoe’s Journal is a first-person narrative from the opening line, The Plague employs a third-person narrative voice throughout. In the last few pages of Camus’s novel a confession is delivered, albeit still not in the first person: “This chronicle is drawing to a close. It is time for Dr Bernard Rieux to admit that he is its author.”24 Rieux has certainly been the character whom the narrative has followed most closely, but there was no obvious earlier evidence to anticipate his deliberate suppression of a firstperson address to the reader. The reason he gives in his admission is that “he has tried to adopt the tone of an objective witness.”25 The text continues: “Being called upon to bear witness in the event of a sort of crime, he maintained a certain reserve, as a well-intentioned witness should.” The wellintentioned witness, this implies, is one who withholds their own emotional response and attempts to report only what he has seen or heard; and this is, a few lines on, exactly how Rieux defines it: “To bear faithful witness he had to report chiefly acts, documents and hearsay. What he personally had to say, his own waiting, his trials, he had to pass over in silence.”26 Gomel believes Defoe and Camus inherit the narrative detachment from an established legacy of plague description: There is a special narrative voice proper to pestilence. This is the voice of Thucydides describing the great plague of Athens in the second book of his History of the

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______________________________________________________________ Peloponnesian War: a clinical, carefully detailed description, strangely detached, despite the fact the historian was one of the victims of the disease.27 Camus only embodies this voice “proper to pestilence” at the final moment, when Rieux says of himself: “Incontestably, he had to speak for all.”28 “I” cannot speak for all, the inference is, if I say “I,” although Rieux intermittently uses “our” or “we,” a mark of community solidarity and a denial of his own narrative uniqueness or priority..29 The voice proper to plague, as the presence of episodemics testifies, is legion even if these tales are only recounted by one. Gomel observes that the plague witness “[loses] their individuality to become the voice of the plague-stricken community,”30 hence the impersonality of Rieux’s account and the conviction that he had to “speak for all.” Defoe’s H.F., on the other hand, opens the Journal with an “I” in the first sentence, and finishes it upon the already quoted, celebratory “I alive.” Yet, he too has reservations about the presentation of a merely personalised account, hinting, as Rieux does, at self-censorship: Such intervals as I had, I employed in reading Books, and in writing down my Memorandums of what occurred to me every Day, and out of which, afterwards, I [took] most of this Work as it relates to my Observations without Doors: What I wrote of my private Meditations I reserve for private Use, and desire it may not be made publick on any Account whatever.31 A new reason now obtrudes to explain the higher rate of episodemic narratives in the Journal: without the disguise of a third-person narrative, and wishing to retain the authority of being an “eyewitness,” H.F. collects as many differing tales and incidents as possible to avoid his account appearing to be merely a record of “private Meditations.” Happy to give his opinion on issues of public health and trade relations, matters very much “without Doors,” when it comes to plague victims the stories are either claimed to be harvested from a third person who had seen the events, or presented as the personal eyewitness accounts of H.F., imbuing the result with the desired verisimilitude. If, as sometimes is the case, H.F. reports events that he believes are not reliable he highlights why the information might be suspect; his reticence to credit what he considered to be exaggerated accounts of murderous nurses and watchmen is an apt example, and such equivocations have the advantage of adding to the overall reality-effect.32 Both H.F. and Rieux, the former through his flaneur-style wanderings around plaguey London and the latter in his capacity as a doctor, make this claim for the

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______________________________________________________________ factuality of their data, be it garnered from public acts, official documents or eyewitness observations. The witness, for these plague texts, is the crucial figure; the authority and the author. Yet, The Journal and The Plague are their authors’ fictions: Camus never experienced a plague epidemic, and Defoe would have been only five years old during the 1665 outbreak. Is a fiction-al testimony of plague, in that case, capable of being an exemplary text in its staging of the figure and significance of the witness? Shoshana Felman, in her essay “Camus’ The Plague or a Monument to Witnessing,” asserts that indeed it is. This essay is attentive to Camus’s novel and Felman, as usual, is patient in her close reading, yielding a productive and stimulating discussion of witnessing within The Plague. Yet, there are difficulties, I think, in her endorsement of Camus’s text, and in the terms of the debate which enable her, in the end, to privilege a literary over an historical discourse.33 Felman’s investigation is particularly interested in how Camus’s rendering of plague can be considered to be like the Holocaust: an event so horrific as to be ineffable, beyond any attempt at a comprehensive or complete “telling” or understanding. She begins by asking: Can contemporary narrative historically bear witness, not simply to the impact of the Holocaust but to the way in which the impact of history as holocaust has modified, affected, shifted the very modes of the relationship between narrative and history?34 Camus, she feels, has produced in The Plague a text that, even though it does not openly declare itself to be about the Holocaust, almost because of this, exemplifies: the way in which traditional relationships of narrative to history have changed through the historical necessity of involving literature in action, of creating a new form of narrative as testimony not merely to record, but to rethink and, in the act of its rethinking, in effect transform history by bearing literary witness to the Holocaust.35 Given the existence of Defoe’s Journal, however, this form of “narrative as testimony” is not at all new: it is not only much older than the Holocaust, which for Felman is the catalyst for Camus’s new practice; it is, in fact, older than the novel. Defoe, like the Camus that appears in Felman’s reading, is concerned that people do not forget; the Journal too is not merely a record but, as Margaret Healy has observed, a “creative appropriation of history.”36

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______________________________________________________________ Felman establishes that a clear series of allusions to the Holocaust can be traced in The Plague, supporting the oft-expressed belief that Camus had intended his text to allegorise aspects of the Second World War. Plague on a large scale, like the Jewish Holocaust, is almost un-believable in its extent; Oran under quarantine resembles a concentration camp: a place of hopelessness where many are condemned, many die and all are trapped. In the health teams Felman sees a community of people committed to fighting plague, just as the French Resistance worked against the Nazis. Answering the question of why a plague epidemic is an appropriate allegory for the Holocaust, Felman replies by drawing an analogy between the initial reluctance of Oran’s citizens to accept the presence of a plague outbreak and the initial disbelief of the European Jews regarding the rumours they heard about the extent of anti-Semitic Nazi intentions. Camus’s Carnets, the notebooks he kept while writing his novels, endorse this interpretation of the relationship between fighting plague and fighting Nazism: I want to express by means of the plague the suffocation from which we all suffered and the atmosphere of threat and exile in which we all lived. At the same time, I want to extend this interpretation to the notion of existence in general. The plague will give the image of those whose share in this war has been that of reflection, silence - and moral suffering.37 If this were not enough, a letter from Camus to Roland Barthes confirms that this is at least one of the paths open to an understanding of the novel: “The Plague, which I wanted to be read on a number of levels, nevertheless has as its obvious content the struggle of the European resistance movements against Nazism.”38 Despite the support these documents provide for her point, however, Felman does not refer to them. This elision of the open debate Camus had with Barthes about The Plague avoids tackling Camus’s very pointed attempt to direct readings of the novel towards its interpretation as an allegory of aspects of the Second World War. Once Camus had publicised this preferred route for under-standing plague and its effects, then the next logical step is to ask why an allegory is necessary at all: if the plague is the encroaching dictatorship of the Nazis, and the death it brings is akin to the Holocaust, with the health teams representing the Resistance, then why not just write a novel which draws upon these historical moments and experiences directly? The answer for Felman is twofold. Firstly, she interprets the importation of plague, a disease considered dead in Western Europe, to be of importance because it is “historically impossible: an event without a referent.”39 In support of this she cites the reaction of Oran’s medical

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______________________________________________________________ community, who initially believe a plague epidemic to be out of the question. But plague is certainly not “impossible” in 1940s Africa nor is it an event without referent: it has a rich cultural and medical history of its own, which Rieux in fact recalls, and the most obvious referent for any reader familiar with the plague tradition would be Defoe’s Journal. Camus even refers his readers to his predecessor by using Defoe’s words as an epigraph to the novel. Although the citation is not drawn from the Journal, Camus’s debt to Defoe is clear and has been noted by more than one commentator.40 Felman’s second proposal is more complex: she argues that there is an imaginative capacity lent by plague to the almost unimaginable destruction of life wrought by the Nazis. In Camus’s novel this imaginative hiatus goes by the name of “abstraction,” a recurring topic amidst the ponderings of Rieux. “Yes, the plague, like abstraction, was monotonous” [“Oui, la peste, comme I’abstraction, était monotone”], the doctor decides.41 Abstraction, as Eugene Hollahan has highlighted in his essay “The Path of Sympathy: Abstraction and Imagination in Camus’ La Peste,”42 is a central concept to The Plague, noticeably discussed in several pages where Dr Rieux is accused by the journalist Rambert: “Vous parlez le langage de la raison, vous êtes dans l’abstraction”43 The doctor considers this charge: “You are thinking in abstract terms.” Was it truly an abstraction, spending his days in the hospital where plague was working overtime, bringing the number of victims up to five hundred on average per week? Yes, there was an element of abstraction and unreality in misfortune. But when an abstraction starts to kill you, you have to get to work on it. “Vous vivez dans l’abstraction.” Etait-ce vraiment l’abstraction que ces journées passées dans son hôpital où la peste mettait les bouchées doubles, portent à cinq cents le nombre moyen des victimes par semaine? Oui, il y avait dans le malheur une part l’abstraction et d’irréalité. Mais quand l’abstraction se met à vous tuer, il fait bein s’occuper de l’abstraction.44 The English translation, however good, cannot capture here the startling repetitions of the full word “abstraction.” Abstraction is not, Rieux decides, just a matter of language as Rambert had suggested, but in fact a sort of parasitic state of mind which must be resisted and fought off, much as Rieux talks heroically about fighting plague. At the close of this section, Rieux concludes that “To struggle against abstraction, one must come to resemble it a little” [“Pour lutter contre l’abstraction, il faut un peu lui ressembler”].45 For Felman, it is precisely this creeping temptation of seeing plague from the

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______________________________________________________________ position of abstraction, as a series of disembodied and detached statistics, which has its parallel in history’s reception of the Holocaust. In the same way as the Holocaust, “What the Plague, above all, means is a mass murder of such scope that it deprives the very loss of life of any impact, reducing death to an anonymous, depersonalized experience, to a statistical abstraction.”46 While this may be equally true of plague as of the Holocaust, to represent the latter under an allegory of the former is itself, I would argue, an act of abstraction, which Felman does not question.47 What abstraction comes down to fundamentally in Camus and Felman’s reading of him is a lack of imagination: an inability to give life to the statistics of the dead. This would perhaps account for why the Journal, despite including various statistical mortality charts and other factual tables, is overwhelmingly more interested in imaginatively bringing to life portraits of dying Londoners. H.F. also tracks a growing disinterestedness in the London community’s attitude towards death and each other that is on a par with the elaboration of abstraction in The Plague: “for towards the latter End [of the epidemic], Mens Hearts were hardened, and Death was so always before their Eyes, that they did not so much concern themselves for Loss of their Friends, expecting, that themselves should be summoned the next Hour.”48 In Felman’s opinion, it is because of an historical, as well as individual, inability to imagine a destruction of life on the scale of the Holocaust that literature’s role in being able to rethink such events becomes key: It is precisely because history as holocaust proceeds from a failure to imagine, that it takes an imaginative medium like the Plague to gain an insight into its historical reality, as well as into the attested historicity of its unimaginability.49 Carrier of the imaginative medium, carrier of plague, literature can render the Holocaust more imaginable: and thus, for Felman, plague becomes an imaginative substitute in alignment with Defoe’s claim, used by Camus in his epigraph to the novel, that “It is as reasonable to represent one kind of imprisonment by another, as it is to represent anything that really exists by that which exists not.”50 This formulation is not entirely satisfactory, on several counts. Firstly, if Camus’s The Plague is to be accepted as an allegory or an imaginative substitute for the (unimaginability of the) Second War World and the Holocaust, what this manifestly fails to address, and where it becomes an abstraction, is in the implicit alignment of the events of the war with an inexplicable force of nature, plague. Such a move naturalises horror, removing the need for an historical, political, and social investigation of the

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______________________________________________________________ causes and events of war: like Oran’s plague, the war would thus be a tragedy that arrived without warning, killed without reason, and ceased without explanation. The questions the novel raises in relation to abstraction, witnessing and the writing of plague are more sophisticated than such a reduction; Felman is correct in seeing plague’s relationship to the Holocaust, but I have reservations about a reading that identifies such an allegory in Camus’s text yet does not explore it as problematic. Secondly, such a reading of The Plague replicates Camus’s public avowal and runs the risk of privileging authorial intent at the expense of other, perhaps equally productive and interesting, avenues for understanding and interpretation. Lastly, Felman’s emphasis upon the allegorical nature of Camus’s text obscures what both The Plague and the Journal reveal: literature’s gift is not in being a substitute for failures to render history imaginable; it is in the complicated provision of a witness who, in Rieux’s words, “speaks for all.” The problem for history is to reconcile and accommodate the facts and events of traumatic life-loss, be they caused by war or plague, with the testimony of the eyewitness. This is something that, in the wake of the Holocaust and other tragedies such as the ethnic cleansing in Rwanda, is being addressed through the compilation of eyewitness archives which exist, sometimes comfortably, sometimes less so, alongside the official documentations which we more ordinarily associate with historical accounts.51 What literature can do is to step into the gap between the official account and the eyewitness, whose perspective is personal and therefore limited, and provide a narrative which gives the impression of having official and myriad eyewitness positions at its command. The witness which fiction can provide thus occupies a fantasy space; this would be one of the strongest arguments available for claiming Defoe’s Journal to be a part of literature, or at the very least to be of the order of fiction rather than history.52 The one who survives, the witness, is the person who chronicles, who is in a position to note, to see, to hear and to report. As Felman observes, Rieux at times withholds information, stating that he knows nothing, for example, about isolation camps other than the one Rambert visited, and such omissions serve to accentuate the trust implicitly embodied in his narrative position which, although it suspends the “I,” inclusively employs more collective pronouns. Similarly, Defoe’s evaluation of the information he receives, his scepticism in the face of more extreme claims of carer cruelty, for instance, strengthen his reliability; he is the witness who, like the historian, measures and balances, sifts and collates, judges and dismisses, but all from the authoritative position of one who was there, and can say “I,” as the historian was not and cannot. Camus notes in the Carnets that his novel “must definitely be an account, a chronicle. But what a lot of problems this creates.”53 The problem was to provide a chronicle, an account,

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______________________________________________________________ which also had the authenticity of a dependable witness; Camus solved this through the ruse of the third-person narrative voice. The role just outlined for literature is one which journalism is traditionally supposed to fulfil. As Felman notes, the journalist in The Plague refuses to write of the events he is witnessing: his writing is paralysed. On the whole, journalism gets short shrift in the novel. As the people of the town begin to die agonising and foetid deaths, “The press, which had had so much to say about the business of the rats, fell silent. This is because rats die in the street and people in their bedrooms; newspapers are only concerned with the street.”54 A new newspaper, ironically entitled The Courier of the Epidemic despite its declared dedication to fighting plague, opens with a flourishing mission statement promising to keep the inhabitants of Oran informed and their morale high, but the narrator comments: “In reality, the paper very soon confined itself to publishing advertisements for new products which were infallible in protecting against plague.”55 The townsfolk find that they cannot marshal the language in which they might be able to describe their experience of the plague to one another. Instead: they resigned themselves to using the language of the market-place and themselves speaking in a conventional manner, that of the simple account or newspaper report, which is to some extent that of the daily chronicle of events. Here too the most authentic sufferings were habitually translated into the banal clichés of conversation.56 The language and profession of journalism are depicted as disingenuous and hackneyed, cynical and insincere, incapable of expressing the true horror of the plague. Rambert’s reluctance to write a journalistic report of the plague, at first seemingly inexplicable and stubborn, helps to secure his place among the more sympathetic characters of the novel. Felman identifies why this is so in her discussion of him and his first meeting with Rieux, from whom he is seeking an official comment upon the condition of the Arabs in Oran. Rieux refuses to help him because Rambert admits that he would be unable to provide a total condemnation. Instead, as Felman highlights, he wishes to “testify as an outsider, to exclude himself from both the condemned and the condemning situation to which he testifies.”57 The problem with the position of the journalist is that he or she is not personally implicated, contaminated or affected by the events witnessed in the same way as one who cannot escape them. Additionally, the journalist is unable to offer an unqualified condemnation of events, either because of the editorial restraints under which they write or because of an obligation to reflect both sides. Felman explains:

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______________________________________________________________ Normally it is the journalist who, by profession, is considered the historical witness of society and culture, the bearer of historic testimony. And yet, Camus’ narrator is suggesting that the testimony he himself enacts by the very telling of The Plague (“playing the part of the historian”) is by no means a journalistic testimony, but something else. If “his business is to say: this is what happened,” he does not say it in the manner of a journalist, because his is an unqualified testimony which, as such, implies “a total condemnation.”58 Both Defoe and Camus were journalists. Defoe had written copiously about plague during the decade before the publication of the Journal, to the extent that Louis Landa has commented “the very idea of plague seems to have been an abiding fact in his consciousness.”59 The difference that the Journal introduces is the fictional testimony of an eyewitness narrator, absent from the opinionated and admonitory journalistic writings, and missing also from the fictional but more homiletic Due Preparations for the Plague, published only a month before the Journal. The fictional testimony of H.F. brings plague closer, renders it more horrific, noisier, and provides a far greater number of stories than the earlier publication. Camus, during the years of writing The Plague, was also working as a journalist and editor for a newspaper that began as an underground Resistance publication. The year of The Plague’s appearance, 1947, was also the year in which Camus severed his connection with Combat. The paper, having fought to remain independent, had finally had to hand over to new financial backers and directors. At the closing drinks attended by the old team, Camus presented them all with a copy of The Plague, wherein a journalist, if unable to write, finds that he can fight: he can condemn the plague and assist those who are sick.60 It seems that Combat’s influential critiques and its commitment to resisting alignment with any political pressure group was easier to maintain during the war and the occupation than after it. Camus intended to concentrate upon his fiction instead. Defoe and Camus, of course, are famous for their fiction more than for their contributions to journalism. Felman argues that The Plague is an act of literature, a participant in the act of testifying history. This is doubly true, she argues, since the publication of an extract in occupied France represents an act of resistance in itself. Such an argument, of course, has deep implications for what it means to write fiction, and in particular to write fictional testimonies. Felman sees Camus’s The Plague as an intervention in the thinking and conception of history; that is, the writing is an act, at once political and committed:

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______________________________________________________________ The literature of testimony, therefore, is not simply a statement (any statement can lag behind events), but a performative engagement between consciousness and history, a struggling act of readjustment between the integrative scope of words and the unintegrated impact of events. This ceaseless engagement between consciousness and history obliges artists, in Camus’s conception, to transform words into events and to make an act of every publication; it is what keeps art in a state of constant obligation.61 Defoe, I believe, would have understood this sentiment, for it makes sense of his marriage of history and fiction in the name of religious preparation and change. The Journal is openly critical of the Royal Court’s early abandonment of plague stricken London, levelling the charge that “their crying Vices might, without Breach of Charity, be said to have gone far, in bringing that terrible Judgement upon the whole Nation.”62 The final note of the Journal is one in which H.F. muses disapprovingly upon how quickly people return to their old habits, an observation Rieux also makes at the end of The Plague. Defoe claims: I can go no further here, I should be counted censorious, and perhaps unjust, if I should enter into the unpleasant Work of reflecting, whatever Cause there was for it, upon the Unthankfulness and Return of all manner of Wickedness among us, which I was so much an EyeWitness of myself…63 The Journal stands as a fictional testimony to the historical outbreak of plague in 1665; as such, it is an intervention into the way in which that event is perceived, fictionalising it for a populace in whose memories the plague was still a fairly recent and incomprehensible calamity, and one which had threatened Europe again only two years before. Yet, the “constant obligation” of which Felman speaks must be, at the same time, a continual betrayal: no one can truly speak for all and there is no language that could articulate such a gesture. Felman is right in advancing that literature provides an imaginative capacity which history cannot, but the way it achieves this is not through the superior images which it can paint or the imaginative experiences it can stimulate; it is through the provision of these from a narrative position which an historical account is unable to provide. There is, of course, danger in this possibility insofar as it provides a fallacious perspective, one which never exists outside of fictional narrative as testimony. The role of the testimonial

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______________________________________________________________ narrator legitimates episodemics in a way that history cannot, for the narrator is their guarantor of authenticity; episodemics are undersigned by the narrative “I saw” or “I heard”: the “I was there” which the historian, by nature of his or her position in relation to the past, is not able to articulate, only compile. In this respect, literature, by employing the fantasy witness who can speak for all, certainly does provide a medium through which traumatic events can be narrativised with imaginative impact, and where abstraction can be addressed and challenged. At the same time, we would do well to keep in mind the very fictional nature of such an enterprise; this awareness would temper Felman’s celebratory affirmation of literature’s ability to transform the history upon which it can draw. While the writing of history has been acknowledged to inevitably have narrative elements and to at times be infected by the use of fictional structures and devices, fiction’s infection by and of history, and even, as these plague texts have shown, by the diseases it can narrate, calls for equally careful scrutiny.

Notes 1

D Defoe, Journal of the Plague Year, Louis Landa (ed), Oxford University Press, London, 1969, p 8. 2 Ibid., p. 76. 3 A Camus, The Plague, Robin Buss (trans), Penguin Books, London, 2001. When I give the French, it is taken from Albert Camus, La Peste, Gallimard, Paris, 1947. French page numbers are given directly after the English and prefaced with F. 4 Ibid., p. 76. 5 R Stephenson, ‘“Tis a speaking Sight”: Imagery as Narrative Technique in Defoe’s A Journal of the Plague Year’, Dalhousie Review, vol. 62, 1982-3, pp. 680-692. 6 Defoe, p. 56. 7 Ibid., p. 16. 8 Ibid., p. 153. 9 Ibid., p. 226. 10 Stephenson, p. 686. 11 Defoe, p. 81. 12 Ibid., p. 162. 13 Ibid., p. 162-3. 14 Camus, p. 166 / F, p. 171. 15 Ibid., p. 170.

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______________________________________________________________ 16

J Thomas, ‘Introduction’, in Flash Fiction: Very Short Stories, James Thomas, Denise Thomas and Tom Hazuka (eds), W.W. Norton and Company, London, 1992, pp. 11-14. 17 Defoe, p. 202. 18 M Shelley, The Last Man, Hugh J. Luke, Jr. (ed), University of Nebraskaka Press, Lincoln and London, 1993. 19 S Freud, ‘Fragment of An Analysis of A Case of Hysteria’ in Case Histories I, Penguin Freud Library, vol. 8, James Strachey (trans. and ed), Penguin, London, 1990, p. 46. 20 S Marcus, Freud and the Culture of Psychoanalysis: Studies in the Transition from Victorian Humanism to Modernity, George Allen & Unwin, Boston, 1984, p. 61. 21 S Thomas, ‘The Ends of the Fragment, the Problem of the Preface: Proliferation and Finality in The Last Man’ in Mary Shelley’s Fictions: From Frankenstein to Faulkner, Michael Eberle-Sinatra (ed), Macmillan, London, 2000, p. 23. 22 Defoe, p. 248. 23 E Gomel, ‘The Plague of Utopias: Pestilence and the Apocalyptic Body’. Twentieth Century Literature, vol. 46, no. 4, Winter 2000, p. 410. 24 Camus, p. 232. 25 Ibid., p. 232. 26 Ibid., p. 232. 27 Gomel, p. 410. 28 Ibid., p. 232. There is one character who Rieux decides he cannot speak for: Cottard, who has committed a crime before the epidemic and is relieved to find that during the outbreak the authorities drop the investigation into his case. Rieux quotes Tarrou, who had said of Cottard, ‘His only true crime is to have given approval in his heart to something that kills men, women and children.’ Camus, p. 233. Approval of mass extermination, this suggests, would require a different order of narrative testimony and witnessing. Shoshana Felman makes this point in the essay, to be discussed in more depth shortly, ‘Camus’ The Plague, or a Monument to Witnessing’ in S Felman and D Laub, Testimony: Crisis of Witnessing in Literature, Psychoanalysis and History, Routledge, New York and Lon-don, 1992, pp. 118-9. She expands upon these comments in a further essay in the same collection entitled ‘Camus’ The Fall, or the Betrayal of the Witness’ in Testimony, pp. 165-203. 29 Although the use of ‘our’ and ‘we’ is intermittent throughout, see the first few pages in particular: Camus, p. 14. 30 Gomel, p. 411. 31 Defoe, p. 76-7. 32 Ibid., p. 83.

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______________________________________________________________ 33

Felman is only too aware of the artificiality of a dichotomy such as literature/history, especially when dealing with, as she amply demonstrates, a novel which is alluding to historical events. However, her championing of a historical-literary enterprise because of its greater ability to stimulate the imagination does not account for how historical writing can have an equal effect; in fact, she assumes it cannot. This critique is developed in the rest of this essay. 34 Felman, ‘Camus’ The Plague’, p. 95. 35 Ibid., p. 95. 36 M Healy, ‘Defoe’s Journal and the English Plague Writing Tradition’, Literature and Medicine, vol. 22. no. 1, Spring 2003, p. 27. 37 A Camus, Carnets 1942-1951, Philip Thody (trans), Hamish Hamilton, London, 1966, p. 35. 38 A Camus, Selected Essays and Notebooks, Philip Thody (trans. and ed), Penguin, London, 1979, p. 220. 39 Felman, ‘Camus’ The Plague’, p. 102. 40 For critical material which links Camus’ practice to Defoe’s see: R Stephenson, ‘The Plague Narratives of Defoe and Camus’, Modern Language Quarterly, vol. 48, 1987, pp. 225-241, and L Brodsley, ‘Defoe’s The Journal of the Plague Year: A Model for Stories of Plague’ in AIDS: The Literary Response, Emmanuel S. Nelson (ed), Twayne Publishers, New York, 1992, pp. 11-22. 41 Camus, The Plague, p. 69 / F, p. 73. 42 E Hollahan, ‘The Path of Sympathy: Abstraction and Imagination in Camus’ La Peste’, Studies in the Novel, vol. 8, 1976, pp. 337-393. 43 Camus, The Plague, p. 68 / F, p. 70: ‘You are talking the language of reason, you are thinking in abstract terms’. 44 Ibid., p. 69 / F, p. 72. 45 Ibid., p. 71 / F, p. 74. 46 Felman, ‘Camus’ The Plague’, p. 97-8. 47 Felman does, however, raise this question in a different essay in the same collection: ‘Was The Plague, The Fall seems now to ask, essentially a rescue operation, as it once had seemed to be? Was the trauma of the inhumanity of the occurrence a disease – a simple stroke of history – from which we can now simply be cured?’ See: S Felman, ‘The Betrayal of the Witness: Camus’ The Fall’ in S Felman and D Laub, Testimony, p. 176-7. 48 Defoe, p. 16. 49 Felman, ‘Camus’ The Plague’, p. 105. 50 The quote is taken from Defoe’s third volume of the Robinson Crusoe trilogy. See: D Defoe, Serious Reflections During the Life and Surprising

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______________________________________________________________ Adventures of Robinson Crusoe with his Vision of the Angelick World, Constable & Company Ltd, London, MCMXXV, p. viii. 51 For an interesting example of how eyewitness accounts and historical fact can be uncomfortably different, and for a discussion which concludes that the eyewitness account has its place and validity despite this, see D Laub, ‘Bearing Witness, or the Vicissitudes of Listening,’ in S Felman and D Laub, Testimony, p. 59-63. 52 Watson Nicholson, in a book which was extremely influential in the circles of Defoe scholarship when first published, argues that most of the events reported by Defoe were based upon fact and are verified by other accounts of the 1665 plague. Thus, Nicholson concludes, the Journal should be considered a history, not fiction. See: W Nicholson, The Historical Sources of Defoe’s Journal of the Plague Year, Kennikat Press, New York, 1966, p. 3. 53 Camus, Carnets, p. 32. 54 Camus, The Plague, p. 29. 55 Ibid., p. 92. 56 Ibid., p. 60. 57 Felman, ‘Camus’ The Plague’, p. 107. 58 Ibid., p. 105. 59 L Landa, ‘Introduction’ in D Defoe, Journal of the Plague Year, p. x. 60 H Lottman, Albert Camus: A Biography, Picador, London, 1979, p. 422. Lottman provides a good account of Camus’s time with Combat over various chapters. 61 Felman, ‘Camus’ The Plague’, p. 114. 62 Defoe, Journal, p. 16. 63 Ibid., p. 248.

Bibliography Brodsley, L., ‘Defoe’s The Journal of the Plague Year: A Model for Stories of Plague’. AIDS: The Literary Response, Emmanuel S. Nelson (ed), Twayne Publishers, New York, 1992, pp. 11-22. Camus, A., The Plague. Trans. Robin Buss, Penguin Books, London, 2001. _________ Selected Essays and Notebooks. Philip Thody (trans. and ed), Penguin, London, 1979. _________ Carnets 1942-1951. Philip Thody (trans), Hamish Hamilton, London, 1966.

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______________________________________________________________

_________ La Peste. Gallimard, Paris, 1947. Defoe, D., Journal of the Plague Year. Louis Landa (ed), Oxford University Press, London, 1969.

_________ Serious Reflections During the Life and Surprising Adventures of Robinson Crusoe with his Vision of the Angelick World. Constable & Company Ltd, London, MCMXXV. Felman, S, and Laub, D., Testimony: Crisis of Witnessing in Literature, Psychoanalysis and History. Routledge, New York and London, 1992. Freud, S., ‘Fragment of An Analysis of A Case of Hysteria’. Case Histories I, Penguin Freud Library, vol. 8, James Strachey (trans. and ed), Penguin, London, 1990. Gomel, E., ‘The Plague of Utopias: Pestilence and the Apocalyptic Body’. Twentieth Century Literature, vol. 46, no. 4, Winter 2000, pp. 405-433. Healy, M., ‘Defoe’s Journal and the English Plague Writing Tradition’. Literature and Medicine, vol. 22, no. 1, Spring 2003, pp. 25-44. Hollahan, E., ‘The Path of Sympathy: Abstraction and Imagination in Camus’ La Peste’. Studies in the Novel, vol. 8, 1976, pp. 337-393. Lottman, H., Albert Camus: A Biography, Picador, London, 1979. Marcus, S., Freud and the Culture of Psychoanalysis: Studies in the Transition from Victorian Humanism to Modernity. George Allen & Unwin, Boston, 1984. Nicholson, W., The Historical Sources of Defoe’s Journal of the Plague Year. Kennikat Press, New York, 1966. Shelley, M., The Last Man. Hugh J. Luke, Jr. (ed), University of Nebraska Press, Lincoln and London, 1993. Stephenson, R., ‘The Plague Narratives of Defoe and Camus’. Modern Language Quarterly, vol. 48, 1987, pp. 225-241.

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______________________________________________________________ _________ ‘“Tis a speaking Sight’: Imagery as Narrative Technique in Defoe’s A Journal of the Plague Year’. Dalhousie Review, vol. 62, 1982-3, pp. 680-692. Thomas, J., ‘Introduction’. Flash Fiction: Very Short Stories, James Thomas, Denise Thomas and Tom Hazuka (eds), W.W. Norton and Company, London, 1992. Thomas, S., ‘The Ends of the Fragment, the Problem of the Preface: Proliferation and Finality in The Last Man’ Mary Shelley’s Fictions: From Frankenstein to Faulkner, Michael Eberle-Sinatra (ed), Macmillan, Lon-don 2000.

Note on Contributor Jennifer Cooke is currently at the University of Sussex and has just completed her doctoral thesis upon the lasting legacy and impact of plague upon texts, theory and culture since it has ceased to be an epidemic threat in Western Europe. She teaches at Sussex and Middlesex Universities.

Strand by Strand: Untying the Knots of Mental and Physical Illness in the Correspondence and Diaries of Antonia White and Emily Holmes Coleman Sherah Wells Abstract This paper considers Antonia White’s and Emily Holmes Coleman’s perceptions of their experiences of mental illness as they are expressed in correspondence and journals. Both writers suffered psychotic breakdowns as young women which they fictionalised in novels and short stories. They did not meet until after these initial breakdowns, and their diaries from these time periods are missing. However, the threat of mental instability continued to plague both women for the rest of their lives, and they continued to discuss the problem in their diaries and letters. The majority of research on White and Coleman in relation to mental illness focuses on the fictional interpretations of their lived experiences. By specifically considering the language White and Coleman use in their correspondence and journals, this paper will demonstrate the extent to which psycho-analysis and Catholicism served as competing discourses for White and Coleman in their life-writing texts. Keywords: scriptotherapy, life-writing, femininity, modernism, madness, Freud

1.

Catholicism,

psychoanalysis,

Introduction: “You are yourselves the problem” In his 1933 lecture “Femininity,” Sigmund Freud attempted to answer the “riddle” of femininity whilst he proclaimed to women that “you are yourselves the problem.”1 During the late 1920s and early 1930s “the woman question” had become a central issue of debate for Freud and other psychoanalysts. Traditional Freudian models of sexuality positioned men as the standard by which women would be measured. Therefore, when it became necessary to define femininity as an independent concept, the answers provided by Freudian psychoanalysis proved less than satisfactory. As Kylie Valentine notes in her study of psychiatry and modernist literature, this debate did not exist in a cultural vacuum, and, as a result, she believes that by studying the history of psychoanalysis in Britain “it becomes possible to recognize [sic] the visibility of madness to the non-medical public, and to the modernist writers and artists in particular.”2 Indeed the proliferation of psychoanalytic discourse throughout Western society after

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______________________________________________________________ World War I encouraged individuals to examine their psyche, but for women, this was a double edged sword. In cultivating a life of introspection they had to face Freud’s challenge that they themselves were the problem. This eventually led to more recent debates in which feminists have sought to appropriate various aspects of traditional psychoanalytic thought in order to re-evaluate the discipline. Alongside these feminist revisions exists the debate surrounding a certain gendering of madness. During the 1970s and 1980s critics began to question the meaning of the “madwoman” in literature and why were women in particular associated with insanity? Notable studies from this time include Phyllis Chesler’s Women and Madness (1972), Sandra Gilbert and Susan Gubar’s The Madwoman in the Attic: The Woman Writer and the NineteenthCentury Literary Imagination (1979), and Elaine Showalter’s The Female Malady: Women, Madness, and English Culture, 1830-1980 (1985). Texts such as these often present “mad” women as rebels who subvert traditional patriarchal norms and values. They also tend to suggest that women are often labelled as “mad” if they defy their “femininity” as defined by society. As Valentine argues, how-ever, this kind of research also argues that clinical frameworks of mental health are sexed and that women have little chance within these frameworks of ever being seen as mentally healthy, that the mental distress experienced by women is not interpretable and comprehensible outside the paradigm of illness, and that psychiatric regimes not only mirror gender roles and patriarchal relations, but actually reproduce them.3 Whilst the texts mentioned above are useful for contextualising the place of women and madness in society, I agree with Valentine that this can provide only a limited viewpoint. It is impossible to fully understand why White and Coleman experienced periods of insanity. It is possible, though, that fictionalising the experiences aided them in coping with certain issues. In that sense the experience of madness itself formed a traumatic event in each woman’s life about which they wrote to try to understand. According to Mary Lynn Broe, who posits that White and Coleman were incest survivors as well, Central to each woman’s writing was the ability to articulate experience beyond the “repetition compulsion” of the original trauma, in the “double story” of each text, and in particular, through the appropriation of enclosures.4 Whilst their writing does not always succeed as a form of scriptotherapy in that sometimes it facilitates the problem rather than solving it, it does

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______________________________________________________________ demonstrate a process by which two women attempt to understand their subjectivities. 2.

The Diary and Correspondence as Spaces of Psychoanalytic and Religious Introspection This paper takes as its starting point the particular developing culture during the early and middle twentieth century which encouraged women to examine themselves from psychoanalytic perspectives and to analyse their subjectivity. It is within this context that White and Coleman constructed their correspondence and their diaries. Both women utilized these textual spaces to try to understand their experiences with mental illness.5 Here I am particularly interested in the language, both psycho-analytic and religious in nature, which they used to describe these experiences. Although the psychoanalytic and religious discourses are strikingly different, by comparing them it is possible to see how White and Coleman rooted much of their discussion of insanity, psychosis, and neurosis in psychoanalytic and religious discourses and how this helped them to understand their subjectivities. To understand why correspondence and the diary (arguably a form of correspondence) presented themselves as spaces in which women writers such as White and Coleman could explore their concerns regarding mental illness, it is helpful to understand the way in which psychoanalysis had an impact on the diaristic project in general. According to Elizabeth Podnieks, While earlier diarists may certainly have used their textual spaces to contemplate their feelings, question their motives, and examine their personalities, they could not have done so with the same degree of awareness as these modernists. Probing the self became a more conscious pursuit done in the new light of scientific legitimacy. Psychoanalysis became the redeeming religion of the early twentieth century, shifting the Puritan diary of spiritual examination to the modernist plane of secular introspection.6 Podnieks’s point is significant from two angles. First, it highlights the pervasiveness of psychoanalytic discourse during the early and middle twentieth century. Second, it explicitly connects the secular exploration of the psyche by psychoanalysis to the interior examination and confession encouraged by Western religion. What is noteworthy about White’s and Coleman’s texts in this light is that although they began by using a secular psychoanalytic discourse, they then turned (back) to a religious discourse, specifically Catholicism, to help them come to terms with their experiences of mental instability.

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______________________________________________________________ Because correspondence and diaries tend toward the autobiographical, it is useful to know the details of their authors’ lives. White and Coleman were born at the turn of the twentieth century, White in England and Coleman in America. Both were involved with several men early in their lives but spent the last half of their lives celibate and unmarried. White suffered from severe writer’s block which prevented her from completing her fifth novel or her autobiography. Coleman had no difficulty producing text, but she did have difficulty finding a publisher for her novel The Tygon and did not actively seek a publisher for much of her other work. Each, however, successfully completed a large quantity of correspondence and diary material in which she considered her interior life within the contexts of psychoanalysis and religion. White underwent analysis several times during her adult life which directly impacted her knowledge of psychoanalytic terms and concepts. Coleman’s engagement with analysis was not as formal as White’s, but she does make clear in her diary that she was familiar with the work of psychoanalysts including Freud and Jung. Both suffered from forms of psychosis as young women which they fictionalised in novels and short stories. In Beyond the Glass, White’s alterego Clara undergoes the same general type of psychotic breakdown as White. After a whirlwind romance with Richard Crayshaw in which she forges such a bond with him that she is able to communicate with him telepathically, Clara experiences a psychotic episode in which she demonstrates paranoia and a loss of identity. This results in her institutionalisation at Nazareth Royal Hospital in London. During the remainder of the novel, she must reconstruct her subjectivity by (re-)learning her identity and how to read and write. Her recovery is indicated by her ability to write a letter to her father. Coleman’s fictional (re-)telling of her experience of post-partum psychosis takes place in The Shutter of Snow, her only published novel. The novel differs from White’s in that the asylum narrative is not framed by a “reality” narrative. Also, Marthe the protagonist never loses her sense of identity. Her psychosis is characterised by paranoia and the belief that she is Jesus Christ. Both White and Coleman agreed that these texts were based on their personal experiences. However, as White observes in a letter to Peter Thorpe “It’s a kind of testimony, if you like, and difficult to make both honest and at the same time a work of art, something consistent with itself and complete and not just ‘reporting’ or ‘a slice of life’.”7 Although White and Coleman wrote their novels from their experiences, it is important not to confuse the authors with their alter-egos. For this reason, I have chosen not to explore the novels in greater detail here. Each text has its own form and intended audience; arguably, diaries and correspondence differ in this area to fiction.8 In addition to psychoanalysis, the other major influential discourse in White’s and Coleman’s texts is religion. As stated above, White’s family converted to Catholicism when she was seven years old. During her second

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______________________________________________________________ marriage, she left the church but returned in 1940. Coleman converted to Catholicism in 1942, but Christianity as a religious institution had influenced her from a young age; her grandfather was a minister. Both women demonstrated a marked passion for their religion; its discourse displaced that of psychoanalysis in their examination of their subjectivities and consequently, their perceptions of mental illnesses. It is interesting to note, though, that although White’s and Coleman’s official adult connections with Catholicism began in the 1940s, religious discourse as an underlying structure is present much earlier in their work. White’s most famous novel Frost in May follows the protagonist Nanda, another of White’s alter-egos, through her time at the Convent of the Sacred Heart. The novel illustrates the zealousness of a young convert, and clearly delineates the tremendous power and influence the nuns at a convent boarding school are able to exert over their adolescent pupils. Coleman did not grow up in this kind of religious structure. Therefore, the earliest writings concerning religion which survive in the archives appear to be in her diary. Her later writings, on the other hand, are dominated by religious poems and plays. For the purposes of this paper, I will first ex-amine the psychoanalytic discourse White and Coleman construct in their texts and then illustrate how the religious discourse comes to supersede it. 3.

Psychoanalysis: Something Rich and Strange White began her first round of Freudian analysis in 1935 for a neurosis which would periodically return for the rest of her life.9 During this time in addition to her traditionally formed diaries, she also kept an analysis diary in which she reflected on her sessions. She was skeptical at first, in part due to the popular and fashionable connotations associated with analysis. In a letter to Coleman on 14 May 1935, she distinguishes her experience from those who undergo analysis for fashionable reasons: The Bloomsburies do it because it’s fashionable, good conversation matter etc, and because they vaguely hope they’ll be improved into something rich and strange which no reasonable analyst would ever undertake to do. I am going to have an unbearable obstruction removed; for the rest any “building up” is my own business as it always must be.10 The “unbearable obstruction” of which White speaks may be interpreted in several ways. Quite literally, she saw her neurosis as an obstacle which prevented her from living a normal life. In literary terms the obstruction represented her writer’s block. However, in light of White’s knowledge of Freudian discourse, removing the obstruction may be interpreted as the return of traumatic childhood memories which White’s conscious mind had

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______________________________________________________________ repressed.11 In her study of White’s diary, Podnieks suggests that that textual space represents White’s construction of her own Freudian case study which allows her to perform both the roles of analyst and analysand; I would extend this proposal to include her correspondence as well.12 Whilst White explicitly analysed herself within her diary, Coleman’s pre-occupation within the diaristic space was to present a literary representation of herself. Her earliest surviving diaries are written in the style of short stories with the individuals in her life re-christened with names from ancient mythology like Agamemnon or even more ordinary names like Karen. With this in mind, it is possible to view Coleman’s self-analysis as a means to the end of constructing her literary persona. On 5 November 1937, she inserts a formal autobiographical text into the space of the diary. She begins with a set of authorial notes about her family: A mother who was insane - whose family had three members insane, and three so peculiar that they verged on madness; a father who was emotional and whose granite determination to adapt himself to earning a living made him a fit subject in later life, for a psychiatrist; the madness on one side, and violent repression on the other, would account for almost anything in the progeny. [...] The third and youngest child, a boy, developed strange traits, suggesting the dementia praecox of his mother; he was an intelligent, wayward misfit. He died of galloping consumption at the age of 26.13 In taking a “birds eye view” of herself, she narrates the autobiography from a third person perspective, and, similar to White, blurs the boundaries between analyst and analysand. Thus, she begins the autobiography “proper” within the diary in this way: Born when her mother was just beginning to show signs of the mental trouble which finally made her permanently insane, she was in close relation to this mother until the age of 7; and her early life must have been saturated with strange images in those fatal impressionable years. When her mother was confined in a mental institution, which took place when Emily was 7, she was sent to boarding school.14 Here Coleman attempts to present herself as a character, who she as the writer attempts to analyse with the objectiveness of a professional analyst. Although she does not explicitly draw a connection here between her mother’s insanity and her own, this and other evidence in the diary is enough to suggest that Coleman was at least trying to determine if there was a link.

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______________________________________________________________ 4.

Catholicism: Denying the Self within the Diaristic Space As cited earlier, Podnieks states that psychoanalysis allowed the diary form to move the practice of introspection away from a “spiritual examination” to a more scientific pursuit. However, for White and Coleman, these boundaries became blurred due to their strong interest in Christianity. Framing their discussions of their experiences of mental illness and anxieties regarding its recurrence within a psychoanalytic context allowed White and Coleman to distance themselves from their situations to a certain degree. Whilst it is not within the scope of this paper to speculate on their reasons for doing so, it is possible to illustrate the contrasting lack of objectivity which occurs when they utilize a religious discourse to discuss their mental illnesses. Only one month after the entry previously cited, Coleman discussed her mental illness within a religious context in her diary: What can take away my peace? Physical illness or insanity, only. […] If it should be God’s will that I am to go insane, how will I profit from it? How much I could learn from it were I just conscious enough to watch myself (as in dreams)! [...] The death of Father or Peter or Johnny would bring me closer to that God, closer to that world in which I half live now, a kind of madness. (A well-regulated & conscious madness, in which I conduct my affairs).15 In this description, Coleman is unable to separate herself from her lived experience. She longs to be “conscious enough to watch [herself]” and to distance herself from her experience so that she might learn from the experience of insanity. The discourse she uses to describe her mental state is not complicated by religious doubts or insecurities. When Coleman converted to Catholicism, she accepted it as a structure for analysing her life in the same way she had accepted psychoanalysis. White, on the other hand, particularly before her official return to the Catholic Church, was plagued by doubts concerning her place within Christianity. The language she used illustrates this as well as the way in which she mixed religious and psychoanalytic language: I cannot tell how much such feelings are genuinely religious or merely morbid. It may be another projection of my father and [sic] my conscience, shelving of responsibility. I so often feel if I try to make my own life I am opposing God’s will and shall be punished even in this life by never having a peaceful mind. All the Catholic teaching is the necessity of denying oneself, giving up one’s own will to the will of God.

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______________________________________________________________ Yet I know neither my own will or God’s will. I seem to have no true will: only compulsions…16 As a patient of analysis, White was much more interested than Coleman in reconciling the two discourses of psychoanalysis and religion in order to understand her own neurosis. However, once both women (re-)converted to Catholicism, they began to embrace the religious discourse with more passion, spurring each other on in correspondence with questions on sticky points of dogma. It is a commonly held belief that converts to a particular religious faith tend to exhibit a greater zeal than those individuals who were born within a particular religious structure. Although White was technically a convert, coming to Catholicism at the age of seven, by the time she returned to the church in 1940, she had already experienced the initial enthusiasm of the convert. As has been demonstrated, she had internalized Catholic dogma to such a degree that even after she had left the church it continued to infiltrate her perspective and language. On 19 March 1944, she wrote to Coleman, “I never know quite how I lost it for until, after the asylum, I never thought it possible to ‘lose my faith’. Even in madness it stayed with me.”17 For this reason, the change in her writing is not as apparent as the change in Coleman’s after her conversion to Catholicism in 1942. This is not to suggest, however, that White did not experience moments of religious fervour. It simply means that the change in her language was not as drastic. In addition to this, Coleman placed a much greater emphasis on the ability to analyse herself from a distance as a pre-meditated construction; this was, as we have seen, initially problematised by her use of religious discourse. However, upon closer inspection, it is possible to see the way in which she manipulated the diaristic form to achieve such a distance. After her conversion, most of Coleman’s diaries and correspondence focused on religious themes. This greatly impacted her discussion of her subjectivity and consequently her mental state. As she struggled to completely embrace Catholicism and live a “Catholic life,” she found it more difficult to live in society. She states in her diary on 3 May 1943: I haven’t the courage to do alone what I might do if I lived in a Catholic town, or convent - a community where all celebrated the truths I love. What is the reason for such weakness! I have come a long way alone. But forming my character is harder than becoming an artist.18 Although her divorce prevented her from becoming a nun, Coleman did live alone at The Hermitage on the grounds of Stanbrook Abbey in Worcestershire for many years. Her isolated lifestyle allowed her to develop a vast interior life which she recorded in her diaries but which remained

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______________________________________________________________ unknown to the nuns in the enclosed convent.19 Here she wrote, prayed, and attended mass on a daily basis. During this time, the diary did come to serve as a site of religious examination, a place in which Coleman could confess her sins and proclaim her love for God. However, Coleman also changed the form of her diary so as to be able to distance herself from her discussion of her subjectivity. 5.

Conclusion: Untying the Knot Strand by Strand It may be argued that a diary in its traditional form is always addressed to a particular type of reader, be they general or specific. The purpose, though, is generally introspection, particularly after the introduction of psychoanalysis in society as described above. After her conversion, Coleman subtly manipulated the form so as to deny her subjectivity as part of the contemplative life. She wrote several of her diaries as letters to John Holms, her close friend, who had died several years before. Over time, she also began to present her diary in the form of conversations with God, Jesus, the Virgin Mary and Mary Magdalene. These conversations are highly specific and extensive and are a clear indication of the intense interior life Coleman lead. They are certainly interesting from a psychological point of view. Whether or not these conversations actually took place or whether they were a deliberate literary technique employed by Coleman is not within the scope of this paper. However, their presence within the textual space of Coleman’s diary indicates that she was attempting to decentralize herself from the diaristic space, a point which she makes clear on 28 June 1942: “I think I’ll stop writing what I do. My stirrings for Perfection are well indicated; and it’s only repetition. […] I think I’ll now write in here only about God and how He affects me.”20 This new attitude toward her diary allowed Coleman the freedom to “de-personalize” her discussions. Just as she began to contemplate religion in more theoretical terms so too did she begin to discuss the nature of “woman” in more general terms rather than the specific nature of “Emily.” In this way Coleman began an analysis of herself contextualised within her relationship with God. As her interior life became more extensive the distance she perceived between herself and God became smaller. She analysed her every action and thought to determine how it contributed to her quest for sainthood. White as well saw a direct connection between her relationship with God and her subjectivity. However, she also had a much stronger sense of guilt about her life and actions than Coleman and so desired “to love God and not hate myself but gradually become detached from and indifferent to myself.”21 The development of her interior life may be characterised as a struggle in which she wrestled with her beliefs and hung on to her faith “by the skin of [her] teeth.”22 Through this it is possible to see the way in which

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______________________________________________________________ White continued to try to fill the roles of analyst and analysand in her diaries and letters even after her formal analysis had stopped. Unlike many of their contemporaries, neither White nor Coleman was driven to suicide by her so-called “madness.” Both died of natural causes in 1980 and 1974 respectively. However, although each was only institutionalised once for insanity, their continued anxiety over its recurrence was fruitfully discussed in their diaries and correspondence. This process was much like analysis which White described as “simply a slow, dull, patient process of unravelling threads which have got tangled and it doesn’t hand, or profess to hand, you the key to life on a golden plate.”23 As this paper has shown, the discourses of psychoanalysis and religion were integral to Antonia White’s and Emily Holmes Coleman’s discussion and understandings of their subjectivities and experiences of mental illness. By situating their inner lives within these contexts, they were able to address not only the nature of madness, but also themselves as women.

Notes 1

S Freud, ‘Femininity’ in New Introductory Lectures on Psychoanalysis, Pelican Freud Library Vol. 2, trans. J Strachey (ed), Penguin, London, 1986, p. 146. 2 K Valentine, Psychoanalysis, Psychiatry, and Modernist Literature, Macmillan, Basingstoke, 2003, p. 64. 3 Ibid., p. 12. 4 M Broe, ‘My Art Belongs to Daddy: Incest as Exile, The Textual Economics of Hayford Hall’ in Women’s Writing in Exile, M Broe and A Ingram (eds),University of North Carolina Press, London, 1989, p. 65. I would also like to note that neither White nor Coleman ever admitted to being victims of incest, and it is not my intention to suggest that they were. I quote Broe to indicate the way in which their writing may serve as a form of scriptotherapy. 5 From a retrospective position, it is possible to see that White and Cole-man suffered from forms of mental illness to varying degrees. However, it is not within the scope of this paper to perform any kind of diagnosis. Both women use the more ambiguous terms of insanity and madness to describe their experiences whilst White also employed the more creative label of “the Beast.” 6 E Podnieks, Daily Modernism: The Literary Diaries of Virginia Woolf, Antonia White, Elizabeth Smart and Anais Nin, McGill Queen’s University Press, London, 2000, p. 89.

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______________________________________________________________ 7

A White, The Hound and the Falcon: The Story of a Reconversion to the Catholic Faith, Virago, London, 1980, p. 38. 8 It may also be argued that diaries are often written with an external audience in mind and with an eye towards publication. Elizabeth Podnieks argues that this is true in White’s case. 9 A White, Antonia White Diaries: 1926-1957, S Chitty (ed), Viking, London, 1992, p. 4. Susan Chitty, White’s elder daughter, uses the term “neurosis” to describe this particular experience. She distinguishes this from White’s experience of “insanity” which earlier resulted in her institutionalization. 10 Emily Holmes Coleman Papers, Special Collections, University of Delaware Library, Newark, Del., USA, Box 69, F560. All quotes by Emily Holmes Coleman are Copyright © 2006 by Estate of Emily Holmes Coleman. Future references will appear with the abbreviation EHC. 11 There is evidence to suggest that as a child White was sexually abused by her father. Although this is mere speculation, her father was a central subject during White’s analysis sessions and one which she continued to struggle with throughout her adult life. 12 Podnieks’s view is particularly supported by White’s construction of a separate “Analysis Diary” in which she specifically recorded the contents of her analysis sessions. 13 EHC, Box 79, F641. 14 Ibid. 15 EHC, Box 79, F642. 16 White, Diaries, p. 117. 17 EHC, Box 69, F562. 18 EHC, Box 82, F664. 19 Only a few nuns are still present at Stanbrook Abbey who remember Coleman. According to Dame Anne, Coleman very rarely left her room and had her meals brought in to her (In Conversation, May 2006). However, the extent of her isolation is somewhat ambiguous as she frequently had visitors and left the grounds. What I wish to emphasise from this is that she chose this lifestyle so that she might lead a contemplative life, and this allowed for the development of her interiority. 20 EHC, Box 81, F656. 21 White, Hound and Falcon, p. 66. 22 Callil, C, ‘Introduction’, Beyond the Glass, Virago, London, 1979, p. 4. 23 White, Hound and Falcon, p. 37

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Bibliography Benson, J., ‘Varieties of “Dis-Belief”: Antonia White and the Discourses of Faith and Scepticism’. Journal of Literature and Theology, vol. 7, 1993, pp. 284-301. Broe, M., ‘My Art Belongs to Daddy: Incest as Exile, The Textual Economics of Hayford Hall’, in Women’s Writing in Exile. M Broe and A Ingram (eds), University of North Carolina Press, London, 1989, pp. 42-86. Callil, C, ‘Introduction’, in Beyond the Glass, Virago, London, 1979, pp. 4-7. Carminero-Santangelo, M., The Madwoman Can’t Speak: Or Why Insanity is Not Subversive. Cornell University Press, London, 1998. Chesler, P., Women and Madness. Allen Lane, London, 1974. Coleman, E. H., The Shutter of Snow. Virago, London, 1981. Emily Holmes Coleman Papers, Special Collections, University of Delaware Library, Newark, Del., USA. Freud, S., “Femininity,” in New Introductory Lectures on Psychoanalysis, trans. J. Strachey (ed), Penguin, London, 1986, pp. 145-169. Gilbert, S. and S. Gubar, The Madwoman in the Attic: The Woman Writer and the Nineteenth-Century Literary Imagination. Yale University Press, London, 1979. Podnieks, E., Daily Modernism: The Literary Diaries of Virginia Woolf, Antonia White, Elizabeth Smart, and Anais Nin. McGill-Queen’s University Press, London, 2000. Rose, E., ‘Antonia White: Portrait of the Artist as a Dutiful Daughter’. LIT, vol. 2, 1991, pp. 239-48. Showalter, E., The Female Malady: Women, Madness, and English Culture 1830-1980. Virago, London, 2004. White, A., Antonia White: Diaries 1926-1957. S. Chitty (ed), Viking, London, 1992.

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______________________________________________________________ _________. Frost in May. Virago, London, 1979. _________. The Hound and the Falcon: The Story of a Reconversion to the Catholic Faith. Virago, London, 1980. Valentine, K., Psychoanalysis, Psychiatry, and Modernist Literature. Macmillan, Basingstoke, 2003

Note on Contributor Sherah Wells is completing her PhD in English Literature at the University of Warwick. Her research examines the representations of psychosis and engagements with Catholicism in the texts of Antonia White and Emily Holmes Coleman.

Part 2 Politics, Community and Biomedicine

Diagnosing Hidden Religion in Medicine: Health, Illness and the Politics of Hope Stephan van Erp Abstract Research on the interface of religious studies and medicine mostly approaches spirituality and prayer as ways of coping with illness and disease. The possible consequences of that approach are a functional or instrumental view of religion and a neglect of the diversity of religious ideas at work in medical practice. Functional or not, confronted with ill-ness and disease, medical doctors, nurses, pastoral carers and family members all apply their life views and world views – explicitly or implicitly – to their work and care. In this paper I would like to ask what a theological approach could contribute to urgent cultural matters while dealing with medical decisions and dilemmas. I would like to argue that, in the field of religious studies and theology, medicine is not only a matter for theological ethics or practical theology, but also a source and workplace for systematic theology. To understand the task of systematic theology of articulating, comparing and contrasting life views and world views in a medical context, I shall first clarify the historical connection between religion and medicine. Next, I shall describe the modern split between religion and medicine and the current failing attempts to restore the connection. Subsequently, I shall sketch a theological agenda for future research on medicine and health, with a focus on the interdisciplinary approach of human suffering. Keywords: Theology, religion, anthropology, Christianity, suffering, medicine, health, illness, care, hope.

1.

Introduction: Doing Interdisciplinary Research It may be unusual to start a scholarly article with the description of personal experiences. Everyone involved in interdisciplinary research projects however knows that their work is accompanied by both feelings of excitement and awkwardness: excitement about entering new fields of study and awkwardness about sometimes having to leave one’s own expertise behind in order to be able to see and understand new ways of reflecting on reality. Recently I have been talking extensively to people working in medicine, anthropology and psychology about possible re-search projects on the interface of theology and the medical sciences. Most of them did not have knowledge of the tasks and topics of contemporary theology. I had hardly any knowledge of their academic fields. Besides this mutual ignorance, one

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______________________________________________________________ of the first experiences in this process was to do away of my self-image as a provider of interdisciplinarity. Instead I have learned from medical scholars what interdisciplinary research might entail, because the medical sciences are most diverse, yet performed with the awareness of joint tasks and shared responsibilities. As a theologian, I could have communicated a certificate of my specific expertise, in my case that of fundamental and doctrinal theology. So, I could have explained the Christian doctrine of incarnation as a theory of the body. I could have introduced the diversity of interpretations of the Christian doctrine of sin and suffering, thereby presupposing that through the ages Christian theology has developed an expertise of the idea of suffering and that medical scientists could profit from the depth and rich-ness of this tradition. I did none of these things. Instead of wanting to develop something like a theology of medicine and health from the start, or to explore the religious factors involved in coping with pain and suffering, I was and am curious to know which views on life and the world I would at least recognise in other fields of study, which problems I share with others, and not unimportantly, not share with others. The latter is sometimes a painful experience, since it so clearly reveals the limits, the forgetfulness and blindness of my own theological discipline and the community it originates from. This attitude or method constitutes the style of interdisciplinary research at the Heyendaal Institute at the University of Nijmegen in the Netherlands, where I work.1 The institute has four departments for collaborative research with scholars from the humanities, the natural, the social and the medical sciences. Instead of as a village of experts, the institute would like to construct the university as a community based on joint research questions and a common interest in seeking possible answers and insights together with researchers from a diversity of disciplines, sharing the joy and passion of doing this. Thus, the institute trades in the results of yet unexplored but collective expertise. To make this work successfully, I believe it might prove useful that researchers leave their self-evident sources and terminologies behind, make a start with retracing the past of discovering research problems, albeit sometimes arbitrary, awkward and insignificant, and tell each other the story of surprising characters and unexpected events involved in exploring ideas and further developments in their work. In what follows, I will try to show how this approach could work when discussing the relationship of theology and medicine. To not only ‘cowardly’ leave my expert standpoint behind while performing the interdisciplinarity described above, I will also present some systematic theology, though not necessarily to start with it or to return to it as the final answer. And that lack of disciplinary necessity will hopefully still reveal a regulative standpoint, based on shared experiences and research questions rather than on

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______________________________________________________________ a specific history of ideas, in order to understand concrete practices by which contemporary communities re-enact and perform their histories rather than to further and perfect existing theories. 2.

The Joint Interest of Theology and Medicine Theology and medical science share an interest in human wellbeing. Both academic disciplines deal with matters of life and death, and of responsibility and communication at times when people’s existence, their trust and their vulnerabilities are at stake. Theology’s dealings with medicine are generally restricted to medical ethics and to pastoral theologies of care in nursing homes and hospitals. I would argue that theologians have missed the opportunity to systematically reflect upon situations that everyone will have to deal with at some point: becoming ill, caring for others, and being dependent on the care of others. In these circumstances, people’s lives become intertwined with narratives of sin, suffering and salvation. Why do we get ill? How do we view illness and health? What are the politics, the aims and limits of care? Doctrinal theology should be concerned with these questions to be of service to practical and moral theologies, but also to medical practice. It is a worrying fact that systematic theologians have been ignoring matters of health and medicine. As if the practice of medicine has nothing to do with theological ideas like creation, incarnation and redemption. By means of analogy, it makes one wonder about the function of a chapel or meditation room in a hospital: a place to get away from all the misery, to find comfort in isolation and silence. Theology should articulate that silence, surely, but in the face of pain and sickbeds, and not away from it all. It should communicate the language of faith, in its attempt to discover the meaning of health, illness and disease in view of a god who cares, or appears overwhelmingly absent. In this article I would like to argue that medicine is not only a matter for moral and practical theologies, but also a source and workplace for contemporary systematic theology. To understand the task of systematic theology of articulating, comparing and contrasting emerging views in medical practice, I shall first clarify the connection between religion and medicine and describe the theological hesitations of making too close connections. Next, I shall lament the modern split between religion and medicine and the current failing attempts to restore the connection. Then, I shall sketch a careful and modest theological agenda for future research on medicine and health. I will conclude with a sketch of a Christian politics of medicine.

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______________________________________________________________ 3.

The Old Covenant between Religion and Medicine Religion and medicine have been closely connected throughout most of human history. From the Mesopotamian blend of supernaturalistic (rituals) and naturalistic (herbs) medical treatments, and the ongoing tradition of North-Asian shamanism to the modern Christian pilgrimages to Lourdes, there has always been a close relation between them.2 It would however be misleading to put it that way, since it suggests the connection consists of two distinctive realms or cultural forms that overlap only in certain situations. In fact, instead of overlapping each other partly, religion and medicine have often been inextricably intertwined. Until this very day, some still regard epidemics as the act of divine retribution, and many more think illness and disease result from the disfavour of God. I would even dare to suggest that the question “Why me?” when someone has become critically ill, even when posed by a non-religious person, manifests at least anticipated traces of a transcendent plan or decision.3 This in turn has led Susan Sontag to attempt freeing contemporary culture from the combination of illness and punishment – its religious origins and its fatalistic character - in her famous essay Illness as Metaphor.4 Sontag seems to suggest that modern medicine and its biomedical approach will and should eventually cure us from these last traces of religion, which seems to run through our veins like an intractable infection. Or does modern medicine confront us, despite or should I say thanks to its impressive and astonishing successes, with human longings for health, the meaning of suffering and sickness in society, and the limits of curing and caring for others? If the latter is the case, and I would like to suggest that it is, then medicine could be a source for rethinking religion and for rediscovering views on sin and suffering, and on healing, wholeness and salvation. To understand how medicine could be considered a theological source, the ‘and’ between religion and medicine first needs clarification. The key text of Western medical practice, the oath of Hippocrates (460-377 B.C.), comes across as surprisingly secular in its description of medical actions and responsibilities, although the oath used to be addressed to “Apollo the physician, and Aesculapius, and Hygieia (Health), and Panaceia (All-heal), and all the gods and goddesses.” Its pragmatic tenor made sure this oath survived as a founding text for medical doctors throughout modernity, unlike for example the oath and prayer of Maimonides (1135-1204), the medieval Jewish philosopher and rabbi, whose text is imbued with explicit religious language. The oath genre of both texts signifies at least the public nature of medical practice. Its continuing performance until today stresses the safeguarding of that practice as a communal responsibility through the individual response to the call to enjoy the art of medicine. But does it still manifest the religious character of that call or of the profession? By removing the address of the original version of

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______________________________________________________________ Hippocrates’ oath and not replacing it by an alternative, modern medical doctors who take the oath not only want to make clear that they do not live in the same culture as the Greek polytheists, but also that their work is accountable to secular authorities alone rather than to deities. Does that signify the end of the long-lasting relation between religion and medicine? And should it be considered as the victory of modern medical science over religious interference in medical practice? 4.

Theology’s hesitant Embrace of Medicine It is undoubtedly true that the rise of modern medicine is the product of scientific results and not of religion. Especially when medicine is concerned, science justifiably has put religion in its right place. But the history of Christian theology itself has always shown a very ambiguous relationship with medicine, putting it at the forefront of the life of faith, but also questioning or at least nuancing it from the very beginning. The early Christians regarded their responsibility to care for the sick and the poor – be they Christian or non-Christian – as ultimately religious. According to some, this has led to one of the profoundest contributions of early Christianity to Western culture, which has lasted until the present day and hopefully for much longer: organised medicine for all.5 Medical care was taken to be one of the main religious tasks, a case of worship and prayer. This view was inspired by biblical texts such as James 5, 14-16: Are any among you sick? They should call for the elders of the church and have them pray over them, anointing them with oil in the name of the Lord. The prayer of faith will save the sick, and the Lord will raise them up; and anyone who has committed sins will be forgiven. Therefore confess your sins to one another, and pray for one another, so that you may be healed. The prayer of the righteous is powerful and effective. From a Christian perspective illness and disease were initially related to sin, and healing to the effects of confession and prayer. From the fourth century onwards Christian inspired medical practice became connected with physical healing as well. From then on both caring and curing were seen as core religious acts, expressing and performing the life of faith through the confession of sins, prayer and eventually also through what we now call ‘biomedical practice.’6 This close relation between medical and religious practice of the early Christian church – and there are similar connections in non-Christian religious traditions – could easily lead to misunderstandings, such as that the sick are sinners by definition or that prayer will heal us from our illnesses.

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______________________________________________________________ Both misunderstandings are based on an all too neat identification of religion and medicine, and on the idea that religion will be beneficial to health. This idea has become very popular again and despite it being supported by sound and scientific qualitative research, there are good theological reasons to deny it, and both Scripture and the history of Christian theology provide enough arguments to do so. Basil the Great (329-379) for example warned against the disproportionate valuation of health and healing in view of faith: When we were commended to return to the earth whence we had been taken and were united with the pain-ridden flesh doomed to destruction because of sin and, for the same reason, also subject to disease, the medical art was given to us to relieve the sick, in some degree at least. And he continues: Whatever requires an undue amount of thought or trouble or involves a large expenditure of effort and causes our whole life to revolve, as it were, around solicitude for the flesh must be avoided by Christians.7 Basil’s remarks show that however central the acts of caring and curing may have been to the life of faith, they have also always been understood as the modest and humble participation in the ever-greater scope of God’s salvific and redemptive work. Already in Romans 8, we find the idea of healing set in a more eschatological tone: I consider that the suffering of the present time are not worth comparing with the glory about to be revealed to us. For the creation waits with eager longing for the revealing of the children of God; for the creation was subjected to futility, not of its own will but by the will of the one who subjected it, in hope that the creation itself will be set free from its bondage to decay and will obtain the freedom of the glory of the children of God. We know that the whole creation has been groaning in labour pains until now; and not only the creation, but we ourselves, who have the first fruits of the Spirit, groan inwardly while we wait for adoption, the redemption of our bodies.

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______________________________________________________________ 5.

From Science to Instrumentalism: the Rise and Fall of Modern Medicine Despite biblical and theological arguments against a direct causal relationship between sin and sickness, or between faith and healing, the history of Christianity has accommodated much medical quackery that suggested that the individual victory over sickness would be the effect of the ‘true’ life of faith. Contrary to current proofs that individual spirituality cures, medieval and early modern ‘proofs’ were less convincing if not harmful, and modern science provided medicine, especially in the nineteenth and twentieth centuries, with major achievements and progress. In view of their failing predecessors and supported by their own successes, the performers of modern medicine warned against a disproportionate valuation of religion in health and healing.8 Besides becoming a culturally honoured practice founded on modern scientific results rather than on insights derived from faith, the rise of modern medicine has had two other consequences in relation to religion. Firstly, medicine and health seem to have become fetishised as Feuerbachian deities, in as far as we project most of our hopes and desires concerning life and death on them. As such, the practice of medicine became a cultural and political power of high significance, and apart from the abuse that that usually attracts, it has increased the devastating impact of medical failures and mistakes.9 Secondly, medical science seduced religious scholars to submit their ideas of religion and spirituality to the same type of instrumental reasoning and ideals of achievement. The emergence of fetishising medicine and health as the replacement or prosthesis of the covenant between religion and medicine could be described as a culturally constructive, and a communitarian and religious act in itself, instead of as merely the result of modern medicine. Philosopher Stephen Toulmin has argued that medicine has challenged scientific positivism and radical individualism, because of its focus on the human condition that we all share.10 Furthermore, he has described medical actions as the result of relationships between individuals and between individuals and society, rather than as the alleviation of individual pain alone. Sociologist Max Weber argued for a similar case when he investigated the idea of theodicy in his The Sociology of Religion: The more the development tends towards the conception of a transcendental unitary god who is universal, the more there arises the problem of how the extraordinary power of such a god may be reconciled with the imperfection of the world that he has created and rules over.11

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______________________________________________________________ And Weber continues, following the results of a questionnaire submitted to German labourers, that it disclosed the fact that their rejection of the god-idea was motivated, not by scientific arguments, but by their difficulty in reconciling the idea of providence with the injustice and imperfection of the social order.12 So, according to Weber, even in modern culture with its dominant scientific paradigm, religion still functions in society as the either failing or successful explanation and meaning of suffering on the one hand, while on the other it shows that different belief systems create different societies through their explanation of suffering. Despite the individual locus of suffering and thanks to interpersonal relations, he states that suffering as a social experience is the foundation and function of religion in society. Thus, Weber and Toulmin – the latter indirectly through the idea of culture – have shown that understanding the ‘and’ in religion and medicine is primarily an exercise in hermeneutics.13 It asks for the ongoing clarification of the presuppositions and constructive meaning of ideas on sickness, suffering and health, and of the practices of caring and curing. Current research on religion and medicine however seems to have fully and uncritically adapted to the pragmatic idea that religion and spirituality have an important functional influence on medical practice. This is shown by the number of academic publications on the theme, which has grown exponentially in recent years. A selection of searches in the medical science database Pubmed/Medline on query combinations like ‘spirituality and health’ or ‘religion and health’, returns thousands of publications, mainly from the last decade.14 The scholars performing these research projects are mainly medical anthropologists and psychologists, who in general do not work in a faculty of theology or religious studies.15 It is also important to note that most publications deal with spirituality rather than religion, and that most articles on spirituality deal with either non-Western religious traditions or the topic of coping, and then again, most of the articles on coping are on prayer. So, current (Anglo-American) research in religion and medicine shows a tendency towards ethnography, individualism and instrumental rationality.16 Theologian and medical ethicist Stanley Hauerwas has argued strongly against such an instrumental approach of the study of religion and medicine and against the cultural idol of the therapeutic. In an article on suffering, he fights the assumption that the task of medicine is to relieve suffering. According to him the danger lies in the idea that medicine will eventually be used as a tool to alleviate every form of suffering, while to his opinion only pain can be alleviated and suffering is something to endure rather than to eliminate.17 Furthermore, there is the danger of the idea of an

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______________________________________________________________ instrumentalised deity. Apart from the fact that Hauerwas could be criticized for making an all too clear distinction between bodily pain and mental suffering, or for making ethics the religious guardian at the limits of medical practice, he puts his finger on the sore spot by showing the lack of theological reflection in the case of instrumental reasoning. Or even better: showing that a lack of theological reasoning leads to instrumental reasoning.18

6.

Towards a Theology of Health and Medicine Should a theology of health cure the new field of research of religion and medicine from its instrumental rationality, by offering, what Giambattista Vico (1668-1744) in his Scienza Nuova paradoxically called a “medicine for science”: revealing and practicing a new poetic way of seeing, thinking, and writing, as an alternative version of modernity? I would suggest, instead of a counter-discourse to sidetrack the instrumentalism of modernity, there is need of a systematic theology conversing with the current practice of medicine and the medical sciences. To start such a conversation between theology and the medical sciences, a phenomenological description of experiences of and views on illness and disease is needed, so that these can be analytically compared and contrasted. In doing so, it will become clear that beyond phenomenology, theology provides for a tradition of reflection on the hermeneutics of experience, which relates experience to culture, tradition and interpretation. Especially when addressing the idea of suffering, which concerns the whole person and not just the body, it will become manifest that neither a neutral description of suffering, nor a resignation to individual experience or mere opinion will suffice to understand suffering, let alone to confidently support certain medical decisions.19 The combination of the phenomenological description and the hermeneutics of experience will show that health and medicine, besides dealing with curing, caring and alleviating pain, are also concerned with ideas, views and theories, in other words: with doctrines. Furthermore, in the case of health and medicine, the articulation of the communality of experiences of suffering is an urgent task. This is not only the case because dealing with illness and disease requires trans-parent communication between doctor, nurses and patients, or because health and medicine have a cultural impact. The influence of politics and policies of hospitals and nursing homes on medical caring and curing and their responses to medical consumerism is also important for furthering cultural and communal awareness in the medical sciences.20 Nowadays, an increasing number of medical faculties appoint professors of public health. Medical anthropologists have recently been developing an ethnography of experience, articulating that suffering is a shared and interpersonal experience.21 But

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______________________________________________________________ theologians and other scholars in the field of religion are well equipped to take part in this debate. Through the recognition of patterns of meaning in medical practice, they could offer their expertise on the historical and sociocultural meaning or, perhaps better, meaningless-ness of pain and suffering, and of sickness and health. Entering the debate on the meaning of pain and suffering, and of health and medical care, is perhaps the most important contribution of theology to an interdisciplinary conversation about medicine. Apart from sharing concerns about individualism, therapeuticism, instrumentalism and consumerism, theology and religious studies have their specific tasks in this conversation, if only to articulate the givenness of life and the politics of belonging to the people of God. But the specificity of the theological conversation with medicine does not have to limit itself to a specific narrative, if “narrative” is defined as the concrete history and identity of scripture and tradition.22 It could also add to the conversation a certain sensibility for that which Rowan Williams has described as “what brings to speech that absence which makes possible the shifting space of prayer and witness that is Christian life.”23 Responding to that sensibility and confronted with the instrumentalism of medical reasoning and research into the effects of spirituality, theology could speak the unspeakable, and be the voice of the sick and the sufferers. Not through the resignation to either the positivism of science by following the same patterns of approach and achievement, or the fatalism of a misunderstood concept of spirituality without resistance, but through the search for an understanding of suffering as a shared – i.e. historical, social and cultural – experience and through interpersonal compassionate presence. That way, medicine could be viewed and experienced as the space of both recognising suffering and compassionate care, in which traces of the divine can be encountered. 7. A Christian Politics of Medicine: Suffering and Hope A. Suffering and kenosis How to speak theologically in face of suffering and care? Clearly, this question only emerges in interdisciplinary research. Because, for an audience comprised only of theologians this question would be somewhat bizarre, because suffering and compassion have been key themes in the history of theology, such as in liberation (focusing on human suffering) and passibilist (raising the question whether God suffers) theologies. Despite this rich history of reflection, however, the question remains whether theological doctrine has informed the world or that the world has informed theological doctrine? These questions become urgent in the case of medical practice, where doctrines are at work although they do not cure, and care is at work, but needs not to be explicitly doctrinally inspired.

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______________________________________________________________ ‘Kenosis’ has been a key term to speak theologically about suffering. Why is this an important idea for Christian theologians? Not only because it is a biblical term that has been applied in the history of dogma, but because it signifies the way God has shared in human suffering. Kenosis is to be understood as a characteristic of the life of God, in that God is made known to mankind as love and self-giving through the suffering of Christ. This divine love is what protestant theologian Jürgen Moltmann called the mutual indwelling of the Trinity, which could best be defined as a constant act of kenosis. In Paul’s letters it is made clear that kenotic suffering is not to be glorified however, but that Christ was suffering in solidarity with the sufferers. As such, kenosis is also a characteristic of human suffering, because it signifies the loving and caring presence for fellow human beings. The following quotes from Holy Scripture show this inextricable relationship between divine and human suffering. Christ did not empty Himself for His own sake; He did it for us, and “for everyone” (Heb. 2:9). “‘To redeem us from the curse of law, he became a curse for us” (Gal. 3:13). “He suffered to help those suffering, He became for all who obey Him, a source of eternal salvation” (Heb. 5:2v). He became poor for our sake in order to make us rich “out of his poverty” (2 Cor. 8:9). Above all, God the Father Himself “gave His only Son so that we may not be lost but may have eternal life” (Jn. 3:16). Thus, kenosis could be an appropriate idea to describe suffering as a shared experience, because of its articulation of the reciprocal, relational movements between divine and human suffering. B. A Christian politics of hope How should the idea of kenosis be introduced into the conversation of theology with the medical sciences? Kenosis could offer ways of presenting to others what being a Christian means, i.e. to be a follower and to imitate Christ. To avoid the dangers I described before, the grace that is the Christian practice of experiencing God’s presence in suffering demands the rejection of two rather simplistic extremes. On the one hand, the idea that God can or should be controlled by human behaviour must be abandoned. The belief that a life lived under the protection of God’s grace necessarily includes the blessings of health or deliverance from suffering, in simple exchange for devotion has little to do with Christianity. Instead it is, according to me, a strange synthesis of capitalist ideology and modern selfhelp doctrine. On the other hand, there is no need for the idea that there is no comfort and that God has abandoned his people to their own suffering. The hope that constitutes the Christian promise is not an eschatological middle way between instrumental rationality and resignation. If the broad task of faithfulness in and toward sickness and suffering is characterized by the virtue of hope, the great challenge for contemporary theology, especially in the face of the spirituality and health movement, is to describe in concrete

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______________________________________________________________ terms what it means to embody the tradition that Adolf von Harnack called “the religion of hope for salvation or healing.” How to understand and perform this hope in connection to healing, without forgetting that any truthful account of the Christian life cannot exclude suffering as integral to that life. German theologian Johann Baptist Metz once argued that in the experience of sickness and suffering, time is lived apocalyptically – as discontinuous, as enrapturement. Apocalyptic time necessitates that human meaning is never reduced to a one-time event in the past or in the future, or reduced to a worldview of progress and instrumentality. This apocalyptic consciousness forces pre-sent experiences to be called into question: suffering calls the future, the past, and the present into question. The question ‘Why me?’ signifies that disruptive questioning. As the antidote to the poison of instrumental rationality, apocalyptic time experience is the placement of Christian life into the concrete history of suffering.47 According to Metz apocalyptic time includes that life transforming memory of suffering, a memory that displays the religious quest: to whom do the world and my life in it belong? To whom do its suffering and time belong? The argument of hope and apocalyptic time shows that I would not want to deny that the Christian practice of healing has benefited the sick and sufferers. And I would not deny that such benefits could be signs of that universal health to come. But I would like to suggest in view also of the history of Christian theology that a focus on the benefit for the individual here and now is potentially distracting from the central Christian idea of the Kingdom of God. For Christians, the presence of the Kingdom is first of all in the gathered community’s Eucharistic celebration, and in the community itself, as an symbolic expression of the fact that those gathered to eat and drink have themselves become God’s presence to the world. Thus the locus of the healing presence in Jesus Christ in the world has become the new politics of the community that gathers in his name. This suggests that the way the community is to embody its commitment to be an inclusive healing presence to the sick and sufferers has to do first of all with politics – i.e. with the way the community orders itself with respect to those who are sick and suffering. To put it in Christian doctrinal terms, the politics forming the foundation for a faithful Christian disposition toward sickness and suffering derives from God’s Trinitarian self-revelation in the biblical stories of creation and redemption. The acts of creation and redemption are acts by which the mutual and kenotic love binding the divine hypostases are generously extended as well to us. To be a human being living in the creation given by God means to live in the historical pursuit of a divinely ordained telos within a world of materially dense moral relationships. This view on suffering and human response from the doctrine of creation, changes the

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______________________________________________________________ meaning of illness. It constitutes the Christian politics of care in contrast to the dominant responses to suffering in the contemporary Western world. Within the context of scientific, economic and instrumental rationality, illness is a threat because it hinders the pursuit of individual goods and wellbeing. There is that suggestion that sick people cannot work or enjoy the fruits of their work, and their sickness is typically understood as a burden to those (non-professionals) who care for them, a burden that keeps the caregivers from working or enjoying the fruits of their work. In the Christian community, illness poses an al-together different set of challenges, specifically to kenotically perform the virtue of misericordia or compassion. 8.

Conclusion: Religion for the Sake of Humane Medicine The real challenge however to Christian theologians today is, instead of presenting this virtue as an all together distinct feature of the Christian community, that they should learn to see it as one of their tasks to recognise glimpses of it in all, and not only Christian inspired medical care, and ultimately as the possible foundation or motivation of humane medicine and care. Now, this might trigger the somewhat esoteric insider/ outsider debate in the philosophy of religion or the suspicion of the application of a generic idea of religion, but this was exactly one of the main intentions of the type of interdisciplinary research I advocated from the start. I believe that by focussing on doctrines, rather than on actions, or causes and effects, Christian theologians can rediscover their life and world views in conversation with others, but they will not find a definitive answer to the question as to what makes their historical and narrative identity specific or even more convincing. Instead they will have to experience over and over again what it means that being religious is posing questions rather than giving answers, to make it possible – and I even have the twentiethcentury, neo-orthodox theologian Karl Barth to support this argument – to speak the unspeakable, to speak about God. All this, in order to serve as a school, to quote British theologian Nicholas Lash, “whose pedagogy has the twofold purpose however differently conceived and executed in the different religious traditions of weaning us from our idolatry and purifying our desire.” I hope that I will cause my colleagues from the medical sciences to have the same doubts about their own ideas and convictions, as they so adamantly and continuously have been giving me.

Notes 1

Heyendaal Institute for Interdisciplinary Research at the Radboud University Nijmegen, the Netherlands: <www.ru.nl/hin>.

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______________________________________________________________ 2

H Koenig, ‘A History of Religion, Science and Medicine: Historical Timeline,’ in Handbook of Religion and Health, ed. HG Koenig, ME McCullough, D.B. Larson (Oxford, 2001), 24-49; Cf. P Rioresci, A History of Medicine (Omaha, 1995). 3 Cf. WHR Rivers, Medicine, Magic and Religion (London, 2001 (1924)), esp. p. 1-26. 4 S Sontag, Illness as Metaphor and Aids and its Metaphors (New York, 2001). 5 GB Ferngren, ‘Early Christianity as a Religion of Healing.’ Bulletin of the History of Medicine 66 (1995) pp. 1-15. 6 Cf. HG Koenig, D.M. Lawson, ‘Religion and the Long Tradition of Caring for the Sick,’ in Faith in the Future. Healthcare, Aging, and the Role of Religion, ed. HG Koenig (Radnor 2004), pp. 98-110. 7 Basil the Great, ‘The Long Rules’, in Saint Basil. Ascetical Works, trans. M. Wagner (Washington 1962), p. 331. 8 Cf. R Porter, Flesh in the Age of Reason (Basingstoke 2005). 9 Cf. JW Bowker, ‘Religions, Society, and Suffering,’ in A Kleinman, V Das, M Lock, Social Suffering (Berkeley 1997), pp. 359-381. 10 S Toulmin, ‘How Medicine Saved the Life of Ethics.’ Perspectives in Biology and Medicine 25 (1982) pp. 736-750. 11 M Weber, The Sociology of Religion, transl. E Fischoff (London 1971), p. 138. 12 Ibid., p. 139. 13 A similar case has been made by JW Bowker, p. 363. 14 <www.pubmed.gov> 15 For similar query experiments, see Koenig e.a., Handbook of Religion and Health, 6. pp. 513-590. 16 For an example of instrumentalism, see J Levin, God, Faith, and Health. Exploring the Spirituality-Healing Connection (New York 2001). For a criticism of instrumentalism, see E. Biser, Kann Glaube heilen? Zur Frage nach Sinn und Wesen einer therapeutischen Theologie, in: B Fuchs, N Kobler (Hg.), Hilft der Glaube? Heilung auf dem Schnittpunkt zwischen Theologie und Medizin (Münster 2002). 17 S Hauerwas, Reflections on Suffering, Death and Medicine, in: Id., Suffering Presence. Theological Reflections on Medicine, the Mentally Handicapped and the Church (Notre Dame 1986), pp. 23-38. 18 Cf. Jürgen Habermas’ criticism of instrumental rationality in: J Habermas, Religion and Rationality. Essays on Reason, God and Modernity (Cambridge 2002).

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______________________________________________________________ 19

Cf. EJ Cassell, The Nature of Suffering and the Goals of Medicine (Oxford, 20042 (1991)). 20 Cf. M Little, Humane Medicine (Cambridge, 1995). 21 A case that recently has been made by medical anthropologists: A Kleinman, J Kleinman, ‘Suffering and its professional transformation: Toward an ethnography of experience.’ Culture, Medicine & Psychiatry 15 (1991), pp. 275-302. 22 Cf. JJ Shuman, KG Meador, Heal Thyself: Spirituality, Medicine, and the Distortion of Christianity (Oxford, 2003). 23 R Williams, ‘God,’ in Fields of Faith: Theology and Religious Studies in the Twenty-first Century, ed. D Ford, B Quash, JM Soskice (Cambridge, 2005), pp. 75-89, p. 81.

Bibliography Biser, E., ‘Kann Glaube heilen? Zur Frage nach Sinn und Wesen einer therapeutischen Theologie,’ in Hilft der Glaube? Heilung auf dem Schnittpunkt zwischen Theologie und Medizin, edited by B. Fuchs, N. Kobler (Münster: Lit Verlag, 2002) Bowker, J.W., ‘Religions, Society, and Suffering,’ in Social Suffering, edited by Arthur Kleinman, V. Das, M. Lock (Berkeley: Berkeley University of California Press, 1997), 359-381. Cassell, E.J., The Nature of Suffering and the Goals of Medicine (Oxford: Oxford University Press, 20042 (1991). Ferngren, G.B., ‘Early Christianity as a Religion of Healing.’ Bulletin of the History of Medicine 66 (1995): 1-15. Hauerwas, S., Suffering Presence. Theological Reflections on Medicine, the Mentally Handicapped and the Church (Notre Dame: Notre Dame University Press, 1986). Kleinman, A., Kleinman, J.. ‘Suffering and its professional transformation. Toward an ethnography of experience.’ Culture, Medicine & Psychiatry 15 (1991): 275-302 Koenig, H.G. ‘A History of Religion, Science and Medicine: Historical Timeline,’ in Handbook of Religion and Health, edited by H.G. Koenig, M.E. McCullough, D.B. Larson: Oxford: Oxford University Press, 2001.

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______________________________________________________________ Koenig, H.G., Lawson, D.M. ‘Religion and the Long Tradition of Caring for the Sick,’ in Faith in the Future. Healthcare, Aging, and the Role of Religion, edited by H. G. Koenig, D.M. Lawson (Radnor: Templeton Foundation Press, 2004). Levin, J., God, Faith, and Health. Exploring the Spirituality-Healing Connection (New York: John Wiley & Sons, Inc. 2001). Little, M., Humane Medicine (Cambridge: Cambridge University Press, 1995) Porter, R., Flesh in the Age of Reason (Basingstoke: Penguin Books, 2005). Prioresci, P., A History of Medicine (Omaha: Horatius Press, 1995) Rivers, W.H.R., Medicine, Magic and Religion (London: Routledge, 2001 (1924)). Shuman, J.J., Meador, K.G., Heal Thyself. Spirituality, Medicine, and the Distortion of Christianity (Oxford: Oxford University Press, 2003) Sontag, S., Illness as Metaphor and Aids and its Metaphors (New York: Picador USA, 2001). Williams, R.. ‘God,’ in Fields of Faith: Theology and Religious Studies in the Twenty-first Century, edited by David Ford, Ben Quash, Janet M. Soskice (Cambridge: Cambridge University Press, 2005), 75-89.

Note on Contributor Dr Stephan van Erp is Director of the Department of Theology and Medical Sciences at the Heyendaal Institute of the Radboud University, Nijmegen, the Netherlands. He is also Lecturer in Systematic Theology at the Department of Religious Studies and Theology of the University of Tilburg, Tilburg, the Netherlands.

Personal and Communal Reactions to Cancer: An Interpretative Phenomenological Analysis of the Beliefs held by Charedi Jewish Breast Cancer Patients Kate Coleman Abstract This paper investigates the meanings charedi breast cancer patients give to their cancer and how they interpret community perceptions of their illness. Semi-structured interviews were carried out with a purposive sample of five charedi breast cancer patients in London. The transcripts were analysed using interpretative phenomenological analysis. Participants believed firstly, that the cancer came from God as part of a pre-determined and meaningful plan, and, secondly, that the disease took the form of a test. The interpretations of their illness accorded with their existing religious beliefs where virtually every event ultimately is understood with reference to the Divine. These interpretations brought the occurrence of cancer within the scope of their existing cognitive schemas making the diagnosis religiously logical and causing minimal disruption to participants’ belief systems. Participants believed that cancer was stigmatised in the charedi community. This had implications for personal identity and social status. Participants believed that the stigma would devolve onto their children making it difficult for them to find marriage partners. The centrality to the charedi framework of beliefs and practices of the highly regulated and controlled method of finding a marriage partner means that it becomes both a focal point and a stimulus for negative perceptions of cancer. The implications for health behaviours are discussed. Keywords: breast cancer, interpretative phenomenological analysis, Jews, Judaism, religion, culture, health beliefs. 1.

Introduction Cancer is not only a disease to be explained in terms of pathology. Cancer is also an illness to be described in terms of the social and psychological response to the underlying disease.1 An individual’s experience of illness cannot be considered in isolation from the cultural context in which it occurs.2 This is particularly true in the case of a life-threatening or lifelimiting illness, such as cancer, where issues of meaning and significance may assume great importance for the patient.3 Cultural factors are involved at every stage of the cancer journey from prevention and screening, through to palliative care and end-of-life issues.4 Hence, under-standing how and why a cancer patient responds to her illness in the way that she does will necessarily involve an appreciation of the role that culture plays in shaping her responses.

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______________________________________________________________ This paper provides an investigation and discussion of the meanings charedi Jewish breast cancer patients give to their cancer and how they understand the perceptions of their illness held by other members of their community. Understanding how a patient may interpret her cancer and the range of attitudes held by fellow members of her community that she may be exposed to may better enable healthcare professionals to provide appropriate and sensitive care. To date, there is little research into the healthcare behaviours and beliefs of members of this particular religious group. 2.

Background There are several major divisions in the modern Jewish world couched principally in terms of a spectrum of outlook ranging from the secular to the strictly orthodox. Jewish orthodoxy can be measured according to two criteria: the extent to which adherents view religious laws and practices as God-given, unchangeable and binding, and the degree of adherents’ immersion in the values and activities of the secular world. Charedi Jews are located at the strictly orthodox end of this spectrum. They believe that Jewish law is of Divine origin and its observance is obligatory. These laws comprise a sophisticated framework guiding every aspect of life. Religious obligations include strict observance of the Sabbath and festivals, strict adherence to dietary laws, modesty in personal behaviour and dress, separation of men and women in public domains and, for men, ongoing religious study and thrice daily prayer. Charedi Jews live in tightly-knit and highly integrated communities functioning in self-imposed cultural insularity. Many features of the secular world are perceived as detracting from God’s sanctity. They hold negative attitudes towards the secular media and, although religious academic ability is highly prized, the study of secular, non-religious subjects may be actively discouraged. 3.

Methods This paper reports on two aspects of an exploratory study conducted in London investigating medical decision-making in a group of charedi breast cancer patients. A. Study Design The study was a qualitative descriptive interview study using a cross-sectional design. Qualitative methods were indicated as the aim was to explore and understand a hitherto under-researched area.5 B. Sampling and Recruitment Five charedi breast cancer patients fluent in written and spoken English were recruited. The small number of participants is consistent with

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______________________________________________________________ the methodological literature concerning qualitative research techniques involving interpretative phenomenological analysis.6 These guidelines recommend a sample size of between five and 15; a number small enough to enable the researcher to retain a picture of each individual case and its place in the group as a whole. Recruitment involved the intermediation of the culture broker to the London charedi community. Culture brokers are charedi Jews who bridge the gap between the community and the medical profession, advising members of the community concerning their health problems, including life-threatening illnesses.7 Culture brokers enable the charedi community to benefit from services provided by the majority secular community, whilst maintaining the preferred level of cultural insularity. The involvement of the culture broker enabled access to this culturally insular population and added credibility to the research. The involvement of communal figures as a bridge between a community and the healthcare professions is not exclusive to charedi Jewish communities and has been reported in aboriginal communities in North America.8 C. Data Collection A semi-structured interview lasting between 45 and 90 minutes was conducted with each participant in their home. Interviews were taperecorded, with participants’ permission and were conducted using an interview guide. This guide was used flexibly to enable participants to raise issues they considered relevant.9 Self-completion structured questionnaires were used to collect demographic data and other personal information. Data collection took place between July and September 2005. The interview guide was devised with the assistance of an advisory panel of healthcare and communal professionals involved in providing cancer care and palliative care to charedi communities (n = 9). Panel members were recruited on the basis of their professional involvement with the issues covered in the study. The panel comprised both clinicians and non-clinicians including three Rabbis, two General Practitioners, three consultant physicians, and one culture broker. A Delphi technique was used to draw up the guide. This consensus-building tool is used to collect and distil information from a group of experts by means of a series of questionnaires.10 The interview questions related to: • participants’ needs for information about their illness; • which issues would be important when thinking about further treatment if the prognosis was terminal; • which people participants had spoken to about their cancer and the issues they had chosen to discuss;

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______________________________________________________________ • •

how participants thought the community reacted towards cancer patients; whether they had been able to make sense of having cancer.

D. Reflexivity and ‘Race-of-interviewer Effects’ In the 1950s and 1960s, survey researchers in the United States of America became increasingly interested in the concept of ‘race-of-interviewer’ effects (RIE). This concept refers to the response ‘bias’ and measurement ‘error’ recorded reflecting the adjustment interviewees made to their expressed opinions and attitudes when questioned by an interviewer from a different racial or ethnic group. The area of inter-racial and interethnic research continues to be a focus of methodological anxiety to researchers. However, others suggest that matching interviewers and respondents from the same ethnic group will not necessarily lead to ‘better’ data: other markers of identity including age, gender, and social class may be influential in achieving or impeding effective communication.11 Interview studies with charedi communities have tended to use interviewers from inside the community.12 However, the findings from these studies suggest that charedi Jews view discussing sensitive issues with fellow community-members as a double-edged sword. Typically, they believe that someone who does not share their belief-system will misunderstand them. However, they also express concerns about breaches of confidentiality that may arise from talking to a member of the same community. It has not been reported whether this disquiet does indeed lead to response bias. I came to this study as a practicing orthodox Jew, although I am not charedi. I resemble participants in that I share their beliefs concerning the Divine origin of the Torah and the obligatory nature of its laws. We use the same religious and cultural concepts and terminology. I differ from participants in that their adherence to the laws is stricter than my own. Furthermore, whilst they shun the secular world, I choose to move in both secular and religious circles. The participants and I belong to different religious and social communities. This puts me in the position of being neither an insider, nor a complete outsider. My hope was that this status would be advantageous. As someone who shares their belief-system, I hoped that I would be perceived as likely to appreciate the issues they face and that this would facilitate communication. As someone who is outside their community, I hoped that concerns over confidentiality would be reduced. E. Data Analysis The interviews were transcribed verbatim and were anonymised. The full transcripts were subjected to interpretative phenomenological analysis (IPA).13 IPA involves the systematic qualitative analysis of verbatim

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______________________________________________________________ transcripts from semi-structured interviews in an attempt “to explore the participant’s view of the world and to understand, as far as possible, an ‘insider’s perspective’ of the phenomenon under study.”14 IPA recognises that this cannot be achieved either directly or completely and that analysis is dependent upon the researcher’s own conceptions when interpreting another individual’s experiences. IPA entails an idiographic approach, beginning with individual cases and particular examples and then moving to more general categorisations that apply to the entire group. The analysis of each transcript incorporates a number of stages culminating in the production of a master list of themes. Finally a consolidated master list of themes is produced for the group of transcripts as a whole. Emergent themes may closely follow questions on the interview guide, whilst others may arise spontaneously. Factors taken into consideration when selecting themes include the rich-ness of the associated evidence and the manner and extent to which they illuminate other aspects of the narrative. F. Study Limitations The study is subject to several limitations. Firstly, due to limited resources triangulation was not possible.15 Secondly, strength of religious belief was not measured and the sample may not have been homogeneous in this respect. Thirdly, all participants were known to each other and were in contact concerning their experiences of cancer and of study participation. Despite assurances of confidentiality and anonymity, participants may, therefore, have been reluctant to express beliefs that they perceived to be particularly personal or in conflict with normative charedi values. Lastly, all interviews took place in participants’ homes, although they were free to request an alternative venue. Gunaratnam observes that con-ducting interviews in a participant’s home may impede open communication because the participant may not want discussion of traumatic experiences to “invade the protective space” of their home.16 It is possible that different results would have been obtained had the interviews been conducted elsewhere. 4. Results and Discussion A. Personal and Demographic Details Participants were aged between 39 and 58 years, with a mean of 50 years. Date of diagnosis ranged from 1998 to the end of 2004; the majority (n = 4) were diagnosed during 2004. Three women had been diagnosed after discovering a lump and one had been diagnosed from a mammogram. The remaining participant did not describe the circum-stances of her diagnosis. Participants lived in the charedi communities of Stamford Hill in North London (n = 3) and North West London (n = 2). Countries of origin included England, Belgium, and the United States of America. All

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______________________________________________________________ participants were married and each had a total of between five and nine children (mean = 7). B. Participants’ Interpretations of their Cancer Participants were asked whether they had been able to make sense of their experience of cancer. Interpretations of illness reflect both a personal and a social construction of meaning: hence, individuals’ ways of making sense of the fact of their diagnosis, their symptoms, and their suffering will be shaped by their culture.17 The participants’ interpretations of their cancer were strongly influenced by their religious beliefs and practices, where virtually every event is ultimately understood with reference to the Divine. Analysis of their accounts revealed two interwoven themes. Firstly, the cancer came from God as part of a pre-determined and meaningful plan. Secondly, the disease took the form of a test. Participants described this test in different ways and one wondered whether it was a punishment. It should be emphasised that this is literally how these women understood their cancer. Ontologically, to the deeply religious, Divine entities are not metaphorical. Such individuals will not treat religious objects as if they were real; for them they are real. Indeed, if the material world is seen as an imperfect reflection of the ultimate Divine reality, as is the case for many charedi Jews, these Divine entities may assume ontological priority.18 Similarly, explanatory accounts of events that locate the causal origin with the Divine may take precedence over empirical scientific explanations. For example, Nechama expressed a strong belief that her cancer was both part of a pre-determined plan and a personal test. Although she did not know the reason for her illness, or the purpose of the test, she was clear that reasons did exist: “So we don’t believe anything happens by chance. Obviously for some reason I was given this test… At the moment I don’t know why or what for.” This conviction that her cancer was part of a Divine plan fell within her wider belief system in which all events occur for a reason and are pre-determined by God. This conviction was a recurring theme for Nechama. Coupled with her belief that her cancer had provided her with the opportunity to achieve personal betterment, this certainty provided her with a compelling argument for accepting her situation. Similarly, Devorah believed that her cancer might be a test. She introduced the possibility that it was a punishment, thereby endowing it with retributive qualities: “I did actually ask is it a punishment. Am I being tested? That went through my mind very very much. Is it a punishment, am I being tested…” Whilst Nechama had not been able to discern the reasons for her cancer, Gitti did suggest a possible reason behind her diagnosis. Like the others, she saw her illness as a test and described it in terms of a challenge given to her by God. She suggested that the reason for the challenge was

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______________________________________________________________ connected with her previous role as an informal carer to cancer patients in the charedi Jewish community. Her challenge was to see how she would cope with this role reversal with her now in the position of patient. I did think, oh here I’m being tested, I did think … Like … Yeah it’s easy to look after cancer patients now let’s see, how you’re gonna …. I did think oh you know … [God] wants to see, right let me see how you’re gonna cope with it […]. So I thought to myself … so [God] is saying, right let’s see Gitti how you’re gonna go with it now … (Gitti) By contrast, Leah was unique in that she rejected a strongly deterministic explanation for her cancer, dismissively referring to “the Master Plan”: Well ‘Master Plan’… Er … you know people say this is fate and this is how … you know… I don’t know…. Um…. if a person is religious then… there is a plan in the world. The world is being led by a certain… plan. That’s what you call a ‘Master Plan’ I suppose. I don’t know… It’s a bit too… Um if there exists one. I don’t know.(Leah) Later in the interview, Leah did allow for a weaker version of determinism to explain aspects of her diagnosis. She recounted that she had been diagnosed from a mammogram at age 51. Her consultant had told her that if her screening schedule had been different and her mammogram had been a year earlier, at age 50, the cancer would not have been detectable. At the same time, if her schedule had called her for screening later than age 51, she would have had a poor chance of survival. Clearly, different timing could have resulted in a radically different outcome. Leah believed that the timing of her mammogram was meant to be. So, although Leah did not believe that her illness had been determined by God, she did believe that He was a guiding force and had provided her with a screening schedule that was to her advantage. How-ever, the outcome was only positive because she kept to the schedule. Her explanation requires the individual to be active and make use of the opportunities that present themselves. Indeed, Leah said that this experience meant that she now strongly encouraged other women to have their mammograms on time. Whilst many situations are easily assimilated into an existing worldview, those that disturb and disorient present a challenge. Religion may serve as a cognitive schema providing representations of events that assist individuals in making sense of their experiences.19 In this way religion may

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______________________________________________________________ be involved in the reconstruction of traumatic events neutralising their potentially destabilising effects. Pargament argues that religious reconstructions of stressful events may involve one or more of three manoeuvres: reframing the event, reframing the person, and reframing the sacred.20 His reasoning behind this claim is that these three factors – the event, the person, the sacred – form the basis of the religious belief held by many; that a benevolent God participates in our lives to ensure that bad things will not happen to good people. However, when traumatic events occur, this belief may be threatened. Whilst questions raised by the catastrophe may result in a wholesale rejection of the belief and its supporting framework of meaning, more usually one or more of the constituent elements – the event, the person, and the sacred – is reinterpreted to re-establish balance within the belief system and to conserve the sense that ultimately a benevolent God does indeed participate in our lives to ensure that bad things will not happen to good people. Each of these manoeuvres can be discerned in the participants’ interpretations of their cancer. The tactic adopted by Nechama was to redefine the traumatic event so that it ceased to be pointless. By defining her cancer as a test given to her by God and as an opportunity to achieve personal betterment, it became representative of God’s continued, meaningful and personal involvement in her life. Though the event of her cancer diagnosis was painful, it also offered the opportunity to attain something of personal significance. Gitti’s definition of her cancer as a challenge is a similar reinterpretation of the event. Both Nechama and Devorah reframed the person in their assertions that although they were unable to discern a reason behind their cancer, they were certain that one did exist. The inability to perceive the true and real meaning of their cancer was due to the limitations inherent in the human capacity for comprehension. Admitting the inability to understand why a traumatic event has happened does not reflect negatively on God or on the situation. The belief in a sacred design behind all events, even the most traumatic and painful, remains intact. What is changed, what is questioned, is the belief about the human capacity to comprehend God’s plans. Leah’s interpretation involves reframing the sacred to delimit God’s power to intervene directly. By taking her cancer outside of God’s remit, her diagnosis does not pose a challenge to the conception of a just God or to her sense of herself as a religiously good and worthwhile individual. Indeed, by allowing that God could act as a guiding force in her life and present her with opportunities that could benefit her, her sense of the benevolence of God, His involvement in her life, and her own worth as deserving of Divine intervention is, in fact, enhanced. Studies in other populations suggest that those who have established and strong religious beliefs are particularly likely to employ religious

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______________________________________________________________ explanations that preserve their existing beliefs.21 Additionally, certain types of experience are more likely to attract religious explanations. Individuals who confront the ‘boundary conditions of life,’ including life-threatening diseases, are more likely to find religious interpretations of their illness compelling.22 Therefore, it is unsurprising that this group of religiously observant charedi Jews facing breast cancer tended to frame their experiences of cancer in religious terms that fit with their existing beliefs. C. Reactions in the Community Participants were asked how they perceive community reactions to cancer and whether their experiences had affected how open they were about their situation. Three themes emerged. Firstly, participants believed that cancer was both stigmatised and stigmatising. Secondly, these negative beliefs had an effect on their personal identity and social standing. Finally, community perceptions meant that a cancer diagnosis had a detrimental effect on the marriage prospects of their children. Devorah believed that members of the charedi community view-ed cancer with shame, that it was “brushed into the carpet [sic].” She de-scribed that, until recently, people would not say the word ‘cancer’ and that even now it is often referred to by the Yiddish expression ‘yena machla’ (tr. ‘that disease’). She believed that these negative perceptions meant that it took courage for people to “come out” to the community and be open about their diagnosis: “No one’s been… I won’t say honest, but I think brave enough to say yes I’m a religious Jew and I’ve had cancer or I’ve got cancer.” Both Devorah and Ruthie brought up the taboo surrounding the word ‘breast.’ Charedi standards of modesty in behaviour extend to conversation and intimate or sexualised body parts are not readily discussed, even between close friends of the same gender. The result is that the diagnosis of breast cancer entails a double stigma. Both women discussed the consequent challenges for health education in the charedi community. Ruthie explained that organising and publicising health education events about breast cancer in the charedi community was difficult because “some of the [newspapers produced by the charedi community] won’t allow you to write the word breast.” Devorah spoke at length about how people had avoided her since her diagnosis. This social isolation had had a profound negative emotional impact. But one of my biggest things was that I really felt that lots of people sort of avoided me. And it was almost like walking along and people like you know trying to avoid me. And I remember coming home quite upset … And still today, still now I’ve finished treatment a few weeks ago

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______________________________________________________________ […] I find a lot of people find it very very very hard to … to talk to me now. (Devorah) Devorah felt that not only had her social status changed but that her personal identity was also under threat because people now categorised her as both contaminated and contaminating. The contaminating power of her cancer was a threat to others. I said to one, I’m not contagious […] and.. she didn’t actually get what I was saying. I didn’t mean it even so much in a physical way, I meant it in a mental way… As well … (Devorah) Leah also considered that the reactions of other people had implications for personal identity; “you become a different person … you’re not the same person as before.” She explained her present situation by recounting an episode that occurred some years previously when a very close family member had been diagnosed with a serious medical condition. At that time she had experienced a social isolation similar to that described by Devorah; all her friends had “just disappeared.” These experiences and their emotional impact had strongly influenced her decision to remain very private about her cancer diagnosis; “I didn’t want to go through all this again … So … I didn’t say anything.” Devorah believed that the importance of making a good match for one’s children was central to explaining the stigma attached to cancer. In a community where romantic love is not a major reason for marrying, a good family background assumes great importance. And unfortunately in our circles it’s all because of [marriages] and everything. I mean I actually made a joke. I said to my husband, got no chance for the rest of the kids have I?!(Devorah) Marriages in the charedi community are arranged through the ‘shidduch system.’ A shidduch begins with a suggestion for a suitable match originating with family members, friends, or professional match-makers. Before a meeting is arranged between the boy and the girl the two families will endeavour to find out as much as possible about the other side, including the medical histories of the individual, his or her parents, and any siblings. Hence, a mother’s diagnosis of cancer would emerge during these investigations. If these initial investigations do not prove to be satisfactory, the shidduch will be abandoned and a meeting will not be arranged.

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______________________________________________________________ The potential negative impact of her diagnosis on her children’s marriage prospects was a dominant theme for Nechama. In fact, it was the only context in which she spoke about the community’s perceptions of cancer. Nechama embarked upon a lengthy process of stating the possible impact her cancer diagnosis might have on her children’s chances of achieving a successful match, followed by an immediate and emphatic rebuttal as she made comparisons between her own situation and others that she considered would affect her children’s prospects more. These alternative scenarios included hypothetical variations on her present situation: “If I would have had it young, if I would have had it in my twenties, my thirties…. you know… it may have made more of a difference.” She also asserted that other illnesses, for example mental illness, would be more likely to have a negative effect on a child’s chances of a successful match with someone from a good background. Or if it’s a case of mental illness in the family […] maybe someone who’s had a nervous breakdown […] Or it’s in the family, the parents have had multiple, or you know would it be something that the children could … inherit a tendency not to be able to cope. (Nechama) Nechama gave the strong impression that she was attempting to convince herself that the marriage prospects of her children remained unharmed, when in reality she believed they had not. Her uncertainties and concerns over who people might talk to when considering her children as potential marriage partners added to this impression. It may be that … people will check up on us and say […] and we don’t necessarily know who they’re talking to and they, someone may tell them or they may reach the conclusion look she’s got cancer, we don’t need this. (Nechama) Despite her present situation and her concerns for her children, Nechama did not challenge the legitimacy of this system of arranging marriages. Indeed, she and her husband had rejected potential partners for their own children on the basis of medical information they had ascertained about the other person’s family. Stigmatisation reduces an individual from “a whole and normal person to a tainted and discounted one.”23 Cancer is significant in evoking negative feelings which manifest at a socio-cultural level as well as at the level of the individual patient.24 Stigma associated with disease is fuelled by a combination of attributes, including aetiology, symptoms, disease burden,

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______________________________________________________________ prognosis, and treatment.25 Some research suggests that stigma may also depend on whether or not the patient is deemed to be culpable for their current ill health and that stigma ascribed to controllable factors elicits a greater negative reaction than that ascribed to uncontrollable factors.26 Stigmatisation of cancer is not restricted to the charedi com-munity, and several of the results of the present study echo the findings of other research. For example, cancer patients frequently reported social isolation;27 patients believed that non-patients felt “dirtied” through con-tact with them;28 patients perceived the word ‘cancer’ to be taboo when in conversation with non-patients;29 previous experiences with other illnesses resulted in wariness of being open about a present cancer diagnosis;30 patients believed their cancer threatened the personal identities of non-patients.31 However, other effects reported by participants in this study may be less likely to be present in the majority population. Specifically, participants’ beliefs that the stigma attached to their cancer devolved onto their children, making it difficult for them to find marriage partners is unlikely to be experienced in the majority population. Individual emotional and psychological distress may be expressed with reference to cultural idiom.32 Similarly, perceptions of others may be articulated in relation to the cultural practices that make up the orienting framework within which a group operates. Family is a central value in charedi Judaism and the group has a strong expectation that its members will marry and begin families at a young age. Charedi values that include highly restricted contact between men and women mean that the search for a marriage partner is neither an individual nor a private quest.33 Instead, marriages are arranged through the strictly regulated shidduch system. Decisions to marry are not based primarily on emotional attachment and other factors, including family background, assume a far greater importance than would be expected in the majority population.34 The prominent role awarded to this system for arranging marriages means that it becomes both a focal point and a stimulus for the negative perceptions of cancer within the charedi community. Cancer is not unique in this respect and stigma attaches to other illnesses including, for example, mental illness35 and infertility,36 something both Devorah and Nechama recognised. The increase in genetic research fostered by the Human Genome Project has increased concerns that labelling conditions and diseases as genetic in origin will lead to greater stigmatisation of these conditions and those individuals who are diagnosed with them. In the present case, therefore, the suggestion would be that those charedi Jews who test positive for faults in the breast cancer genes BRCA1 and BRCA2 will be subject to a degree of stigmatisation greater than that already experienced by cancer patients in the community. However, Sankar et al. found that genetic cause does not confer a uniform meaning across conditions and interpretations may be positive or negative: genetic cause did not automatically impart to

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______________________________________________________________ respondents a sense of being stigmatised. The authors conclude that these variations across conditions mean that caution should be exercised when extending results obtained concerning one condition to other conditions or to other populations.37 Whether charedi Jews would make a distinction based on whether the cause of a disease is genetic or not is an interesting question. Participants in the present study understood their illnesses as first and foremost Divinely given and Divinely determined. Hence, labelling conditions as genetic or environmental in origin may be seen as of secondary importance. Explanatory accounts that locate the causal origin with God may continue to take precedence over empirical scientific accounts: whether the cause is genetic or environmental, it is still part of God’s plan. On the other hand, a genetic cause may well create additional difficulties when marrying off children. 5.

Conclusions The relationship between religious forms of coping during serious illness and psychological outcome has been well documented with studies reporting positive outcomes for patients who engage in religious coping.38 The negative impact of stigma and social isolation on quality of life and psychological outcome has similarly been explored in the existing literature.39 This concluding section will discuss the possible implications the findings have for healthcare behaviours in charedi Jews. A. Participants’ Interpretations: Possible Implications Evidence from studies conducted in other populations demonstrates that religiously deterministic beliefs concerning the origins and meaning of cancer, such as those expressed by the participants, are associated with delays in screening40 and with late presentation.41 How likely is it that the charedi Jewish population will also exhibit these healthcare behaviours? Explanatory models of illness are pragmatic; they enable the individuals who hold them to assess the risk of developing disease, make treatment decisions, and communicate their distress.42 Therefore, there is likely to be a strong relationship between an individual’s explanatory model of illness and their healthcare behaviours. However, beliefs concerning the origins and meaning of an illness comprise only part of an explanatory model of illness. Other beliefs are also included in explanatory models of illness, including beliefs about healing mechanisms, appropriate and inappropriate treatment, the roles of patient and healer, and expectations for recovery.43 Therefore, beliefs concerning the origins and meaning of an illness only partially influence an individual’s health-care behaviour. Normative charedi religious values mandate appropriate medical treatment in times of ill health.44 It is possible that the influence of these

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______________________________________________________________ values on charedi individuals’ explanatory models of illness will mitigate the effects of religiously deterministic beliefs concerning the origin and meaning of illness that have been reported in other populations. However, there is little research examining these issues in charedi populations and further research is required to explore the totality of their healthcare beliefs and behaviours and the association between them. B. Stigma: Possible Implications Studies conducted in other populations, report that women from minority ethnic backgrounds are less likely to participate in cancer screening programmes than women from the majority Anglo-Caucasian population.45 A prominent barrier among these ethnic minority non-participants is the fear of stigmatisation. Other research reports that patients’ efforts to hide stigmatised illness often leads to delays in seeking healthcare and health information.46 Similarly, in the charedi community, the fear of stigma may lead to aversion to cancer screening, late presentation and reluctance to seek support.47 A prominent feature of charedi communities is the tendency towards self-sufficiency, whenever possible. In addition to schools, synagogues and specialist shops, Rabbinically approved organisations, run by members of the community, provide a range of health and social services. The motivation behind this in part stems from the wish to remain as culturally separate from the secular majority community as possible; by managing their own health and social care organisations charedi Jews can ensure that the services offered do not conflict with charedi values and beliefs. Another strong motivation is the value of ‘gemilas chasadim’ (literally, ‘dispensing kindnesses’) which exhorts members of the com-munity to care for one another through good deeds and acts of charity. These organisations provide services either in cases of general ill health or to meet the needs of specific medical conditions and diagnoses including depression and other mental health problems, child-birth, infertility, and learning disabilities. Services provided include hospital transportation, medical equipment, kosher mealson-wheels, nursing volunteers, counselling, residential nursing care and day centres.48 It is striking that within this extensive network, no organisation exists within the charedi community to provide support exclusively to cancer patients. This contrasts with the overall rapid growth in the number of communal health and social care organisations in Stamford Hill and North West London over the past decade.49 It is possible that stigma offers at least a partial explanation for this lack of officially sanctioned communal support, although it is noteworthy that communal support exists for other stigmatised conditions including learning disabilities and mental health problems. Results from studies conducted in other ethnic minority populations suggest that,

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______________________________________________________________ were they to exist, fear of stigmatisation may mean that charedi patients and their families would be reluctant to engage with community-based services.50 Previous studies involving charedi Jews indicate that cultural isolation limits these individuals’ abilities to access healthcare information produced and distributed by organisations external to their community. 51 However, the findings of the present study indicate that stigma is a barrier to the production and dissemination of healthcare information within the charedi community. The successful provision of healthcare to those whose illnesses are stigmatised presents a challenge. Understanding the origin, nature and impact of stigma will enable healthcare services external to the charedi community to better meet the needs of this population. The results of this exploratory study suggest that the attitudes of charedi Jews towards cancer may be similar in several respects to the attitudes held by members of other cultural groups. However, further research is required to investigate the phenomenon of cancer related stigma more fully. Research is also required into how the existing resources within the charedi community can be successfully harnessed to provide effective and appropriate support and information in a way that is acceptable and accessible to charedi patients and their families.

Notes 1

S Dein, Culture and Cancer Care Anthropological Insights in Oncology, Maidenhead, Open University Press, 2006, p. 16. 2 Culture is used in preference to ethnicity: ethnicity has proved difficult to operationalise, and a lack of clear and meaningful boundaries means that accurate definitions of ethnic groups are not feasible. The result is that individuals with diverse beliefs and behaviours may be grouped together in a single category, see H Macbeth, ‘Defining the ethnic group: important and impossible’, in Health and Ethnicity, H Macbeth and P Shetty (eds), London, Taylor and Francis, 2001. Culture potentially enables more subtle distinctions to be made between groups that may be missed using definitions based on ethnicity or race. A range of definitions exist for the concept ‘culture’. The contemporary anthropologist Renato Rosaldo (b. 1941) writes that culture lends significance to human experience by selecting from and organising it. Culture refers broadly to the forms throughout which people make sense of their lives, see J Monaghan and P Just, Social and Cultural Anthropology, Oxford, Oxford University Press, 2000, pp. 34-52. 3 K Pargament, The Psychology of Religion and Coping, New York, Guilford Press, 1997 p. 109.

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______________________________________________________________ 4

L Kirmayer, ‘The cultural diversity of healing: meaning, metaphor and mechanism’, British Medical Bulletin, vol 69, 2004, pp. 33-48; Dein, 23. 5 C Pope and N Mays, ‘Qualitative methods in health research’, in Qualitative Research in Health Care, C Pope and N Mays (eds), London, BMJ Books, 1999, pp. 1-10. 6 J A Smith, ‘Beyond the divide between cognition and discourse: using the interpretative phenomenological analysis in health psychology’, Psychology and Health, vol. 11, 1996, pp. 261-271; J A Smith et al, ‘Doing Interpretative Phenomenological Analysis’, in Qualitative Health Psycho-logy, M Murray and K Chamberlain (eds), London, Sage, 1999, pp. 218-240. 7 J Westermeyer, ‘Cultural factors in clinical assessment’, Journal of Consulting and Clinical Psychology, vol. 55, 1987, pp. 471-478: D Greenberg and E Witztum, Sanity and Sanctity: Mental health work among the Ultra-Orthodox in Jerusalem, New Haven, Yale University Press, 2001. 8 S C Heilman and E Witztum, ‘Patients, chaperones and healers: Enlarging the therapeutic encounter’, Social Science and Medicine, vol. 39, 1994, pp. 133-143. 9 Smith et al., p. 218. 10 H A Linstone and M Turoff, The Delphi Method: Techniques and Applications, Reading, MA, Addison-Wesley, 1975. 11 A Phoenix, ‘Practising feminist research: the intersection of gender and race in the research process?’, in Researching Women’s Lives from a Feminist Perspective, M Maynard and J Purvis (eds), London, Taylor, 1995, pp. 49-71. 12 M. Cinnirella and K.M. Loewenthal, ‘Religious and ethnic group minorities on beliefs about mental illness: a qualitative interview study’, British Journal of Medical Psychology, vol. 72, 1999, pp. 505-524; C Holman and N Holman, Torah, worship and acts of loving kindness: Baseline indicators for the Charedi community in Stamford Hill, Leicester, De Montfort University, 2002; S M Albert, S Harlap and L Caplan, ‘Cancer screening among older women in a culturally insular community’, Preventive Medicine, vol. 39, 2004, pp. 649-656. 13 Smith, p. 261; Smith et al., p. 218. 14 Smith, p. 261. 15 N Mays and C Pope, ‘Quality in qualitative health research’, in Qualitative Research in Health Care, C Pope and N Mays (eds), London, BMJ Books, 1999, pp. 89-101. 16 Y Gunaratnam, Researching ‘Race’ and Ethnicity Methods, Knowledge and Power, London, Sage, 2003, p. 172.

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______________________________________________________________ 17

Dein, p. 119; L J Kirmayer, ‘The body’s insistence on meaning: metaphor as presentation and representation in illness experience’, Medical Anthropology Quarterly, vol. 6, 1992, pp. 323-346b. 18 R Littlewood and S Dein, ‘The effectiveness of words: Religion and healing among the Lubavitch of Stamford Hill’, Cultural Medicine and Psychiatry, vol. 19, 1995, pp. 339-383; S C Heilman and E Witztum, ‘All in faith: religion as the idiom and means of coping with distress’, Mental Health, Religion and Culture, vol. 3, 2000, pp. 115-124. 19 Pargament, p. 222. 20 Pargament, pp. 221-232. 21 Pargament,, pp. 114-119; A Bussing, T Osterman and P F Matthiessen, ‘Search for meaningful support and the meaning of illness in German cancer patients’, Anticancer Research, vol. 25, 2005, pp. 1449-1455.. 22 Pargament, p. 114; H G Koenig, D K Weiner, B L Peterson, K G Meador and F J Keefe, ‘Religious coping in the nursing home: a bio-psychosocial model’, International Journal of Psychiatry in Medicine, vol. 27, 1997, pp. 365-376; H G Koenig, D B Larson and S S Larson, ‘Religion and coping with serious medical illness’, Annals of Pharmaco-therapy, vol. 35, 2001, pp. 352-359; S A Rogers, E L Poey, G M Reger, L Tepper and E M Coleman, ‘Religious coping amongst those with persistent mental illness’, International Journal for the Psychology of Religion, vol. 12, 2002, pp. 161-175. 23 E Goffman, Stigma, Harmandsworth, Penguin Books, 1968, p. 12. 24 J Flanagan and S Holmes, ‘Social perceptions of cancer and their impacts: implications for nursing practice arising from the literature’, Journal of Advanced Nursing, vol. 32, 2000, pp. 740-749. 25 P Sankar, M K Cho, P Root Wolpe and C Shairer, ‘What is in a cause? Exploring the relationship between genetic cause and felt stigma’, Genetics in Medicine, vol. 8, 2006, pp. 33-42. 26 A Chapple, S Ziebland and A McPherson, ‘Stigma, shame, and blame experienced by patients with lung cancer: a qualitative study’, British Medical Journal, vol. 328, 2004, pp. 1470-1475. 27 Flanagan and Holmes, p. 740; Chapple et al., p. 1470; K Wilson and K A Luker, ‘At home in hospital? Interaction and stigma in people affected by cancer’, Social Science and Medicine, vol. 62, 2006, pp. 1616-1627. 28 Chapple et al., p. 1470. 29 Wilson and Luker, p. 1616. 30 Chapple et al, p. 1470. 31 Flanagan and Holmes, p. 740. 32 Heilman and Witztum, ‘All in faith: religion as the idiom and means of coping with distress’, p. 115.

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______________________________________________________________ 33

J R Mintz, ‘Families’, in Hasidic People: A Place in the New World, J R Mintz, Cambridge, MA: Harvard University Press, 1994, pp. 60-70. 34 Ibid., p. 60. 35 Greenberg and Witztum, p. 228; Cinnirella and Loewenthal, p. 505; E S Lightman and R Shor, ‘Askanim: informal helpers and cultural brokers as a bridge to secular helpers for the Ultra-Orthodox Jewish communities of Israel and Canada’, Families in Society, vol. May/June, 2002, pp. 1-10. 36 S M Kahn, ‘Rabbis and reproduction: The uses of new reproductive technologies among ultraorthodox Jews in Israel’, Working Paper No. 3, Haddassah International Research Institute of Jewish Women at Brandeis University (1998) available from Brandeis University (www.brandeis.edu/ hirjw); K M Loewenthal and M B Rogers, ‘Culture-sensitive counselling, psychotherapy and support groups in the Orthodox-Jewish community: how they work and how they are experienced’, International Journal of Social Psychiatry, vol. 50, 2004, pp. 227-240. 37 Sankar et al., p. 33. 38 Koenig et al., 352; S Feher and R C Mahy, ‘Coping with breast cancer in later life: the role of religious faith’, Psycho-Oncology, vol. 8, 1999, pp. 408416; A F Abraido-Lanza, E Vasquez and S E Echeverria, ‘En las manos de Dios [in God’s hands]: Religious and other forms of coping among Latinos with arthritis’, Journal of Consulting and Clinical Psychology, vol. 72, 2004, pp. 91-102. 39 Goffman; Flanagan and Holmes, p. 740; Wilson and Luker, p. 1616. 40 Dein, p. 119; L J Blackhall, S T Murphy, G Frank, V Michel, and S Azen, ‘Ethnicity and attitudes toward patient autonomy’, Journal of the American Medical Association, vol. 274, 1995, pp. 820-825; B D Powe, ‘Cancer fatalism among elderly Caucasians and African-Americans’, Oncology Nursing Forum, vol. 22, 1995, pp. 1355-1359. 41 L Remennick, ‘The challenge of early breast cancer detection among immigrant and minority women in multicultural societies’, Breast Journal, vol. 12, 2006, pp. S103-S110. 42 Dein, p. 23. 43 Kirmayer, ‘The cultural diversity of healing: meaning, metaphor and mechanism’, p. 33. 44 M D Tendler, Responsa of Rav Moshe Feinstein, Volume 1 Care of the Critically Ill, Hoboken, KTAV Publishing House, 1996; A S Abraham, Nishmat Avraham Volume 2: Yoreh Deah, Brooklyn, Mesorah Publications Limited, 2003. 45 M Meana, T Bunston, U George, L Wells and W Rosser, ‘Older immigrant Tamil women and their doctors: attitudes toward breast cancer screening’, Journal of Immigrant Health, vol. 3, 2001, pp. 5-13; C Kwok, R Cant and G

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______________________________________________________________ Sullivan, ‘Factors associated with mammographic decisions of ChineseAustralian women’, Health Education Research, vol. 20, 2005, pp. 739-747. 46 M Berger, T H Wagner and L C Baker, ‘Internet use and stigmatized illness’, Social Science and Medicine, vol. 61, 2005, pp. 1821-1827. 47 Albert et al., p. 649; Lightman and Shor, p. 1; Loewenthal and Rogers, p. 227. 48 Ibid., p. 227 49 Ibid., p. 227. 50 Kwok et al, p. 739 ; Meana et al., p. 5. 51 Albert et al., p. 649. ; D Goddard and W B Helmreich, ‘Ethnicity and health: Attitudes of Italian Americans and Hasidic Jews towards osteoporosis’, Humboldt Journal of Social Relation, vol. 28, 2004, pp. 55-79.

Bibliography Abraham, A.S., Nishmat Avraham Volume 2: Yoreh Deah. Mesorah Publications Limited, Brooklyn, 2003. Abraido-Lanza, A.F., Vasquez, E. and Echeverria, S.E., ‘En las manos de Dios [in God’s hands]: Religious and other forms of coping among Latinos with arthritis’. Journal of Consulting and Clinical Psychology, vol. 72, 2004, pp. 91-102. Albert, S.M., Harlap, S. and Caplan, L., ‘Cancer screening among older women in a culturally insular community’. Preventive Medicine, vol. 39, 2004, pp. 649-56. Berger, M., Wagner, T.H. and Baker, L.C., ‘Internet use and stigmatized illness’. Social Science and Medicine, vol. 61, 2005, pp. 1821-27. Blackhall, L.J., Murphy, S.T., Frank, G., Michel, V. and Azen, S., ‘Ethnicity and attitudes toward patient autonomy’. Journal of the American Medical Association, vol. 274, 1995, pp. 820-25. Bussing, A., Osterman, T. and Matthiessen, P.F., ‘Search for meaningful support and the meaning of illness in German cancer patients’. Anticancer Research, vol. 25, 2005, pp. 1449-55.

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______________________________________________________________ Chapple, A., Ziebland, S. and McPherson, A., ‘Stigma, shame, and blame experienced by patients with lung cancer: a qualitative study’. British Medical Journal, vol. 328, 2004, pp. 1470-75. Cinnirella, M. and Loewenthal, K.M., ‘Religious and ethnic group minorities on beliefs about mental illness: a qualitative interview study’. British Journal of Medical Psychology, vol. 72, 1999, pp. 505-24. Dein, S., Culture and Cancer Care Anthropological Insights in Oncology. Open University Press, Maidenhead, 2006. Feher, S. and Mahy, R.C., ‘Coping with breast cancer in later life: the role of religious faith’. Psycho-Oncology, vol. 8, 1999, pp. 408-16. Flanagan, J. and Holmes, S., ‘Social perceptions of cancer and their impacts: implications for nursing practice arising from the literature’. Journal of Advanced Nursing, vol. 32, 2000, pp. 740-49. Goddard, D., and Helmreich, W.B., ‘Ethnicity and health: Attitudes of Italian Americans and Hasidic Jews towards osteoporosis’. Humboldt Journal of Social Relation, vol. 28, 2004, pp. 55-79. Goffman, E., Stigma. Penguin Books, Harmandsworth, 1968. Greenberg, D. and Witztum, E., Sanity and Sanctity: Mental health work among the Ultra-Orthodox in Jerusalem. Yale University Press, New Haven, 2001. Gunaratnam, Y., Researching ‘Race’ and Ethnicity. Sage Publications, London, 2003. Heilman, S. C. and Witztum, E., ‘Patients, chaperones and healers: Enlarging the therapeutic encounter’. Social Science and Medicine, vol. 39, 1994, pp. 133-43. Heilman, S.C. and Witztum, E., ‘All in faith: religion as the idiom and means of coping with distress’. Mental Health, Religion and Culture, vol. 3, 2000, pp. 115-24. Holman, C. and Holman, N., Torah, worship and acts of loving kindness: Baseline indicators for the Charedi community in Stamford Hill. De Montfort University, Leicester, 2002.

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______________________________________________________________ Kahn S.M., ‘Rabbis and reproduction: The uses of new reproductive technologies among ultraorthodox Jews in Israel’. Working Paper No. 3, Haddassah International Research Institute of Jewish Women at Brandeis University (1998); available at www.brandeis.edu/ hirjw. Kirmayer, L.J., ‘The body’s insistence on meaning: metaphor as presentation and representation in illness experience’. Medical Anthropology Quarterly, vol. 6, 1992, pp. 323-46b. Kirmayer, L.J., ‘The cultural diversity of healing: meaning, metaphor and mechanism’. British Medical Bulletin, vol. 69, 2004, pp. 33-48. Koenig, H.G., Weiner, D.K., Peterson, B.L., Meador, K.G. and Keefe, F.J., ‘Religious coping in the nursing home: a biopsychosocial model’. International Journal of Psychiatry in Medicine, vol. 27, 1997, pp. 365-76. Koenig, H.G., Larson, D.B. and Larson, S.S., ‘Religion and coping with serious medical illness’. Annals of Pharmacotherapy, vol. 35, 2001, pp. 35259. Kwok, C., Cant, R. and Sullivan, G., ‘Factors associated with mammographic decisions of Chinese-Australian women’. Health Education Research, vol. 20, 2005, pp. 739-47. Lightman, E.S. and Shor, R., ‘Askanim: informal helpers and cultural brokers as a bridge to secular helpers for the Ultra-Orthodox Jewish communities of Israel and Canada’. Families in Society, vol. May/June, 2002, pp. 1-10. Linstone, H.A. and Turoff, M., The Delphi Method: Techniques and Applications. Addison-Wesley, Reading, MA, 1975. Littlewood, R. and Dein, S., ‘The effectiveness of words: Religion and healing among the Lubavitch of Stamford Hill’. Cultural Medicine and Psychiatry, vol. 19, 1995, pp. 339-83. Loewenthal, K.M. and Rogers, M.B., ‘Culture-sensitive counselling, psychotherapy and support groups in the Orthodox-Jewish community: how they work and how they are experienced’. International Journal of Social Psychiatry, vol. 50, 2004, pp. 227-40.

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______________________________________________________________ Macbeth, H., ‘Defining the ethnic group: important and impossible’. In Health and Ethnicity, H. Macbeth and P. Shetty (eds), Taylor and Francis, London, 2001. Mays, N. and Pope, C. ‘Quality in qualitative health research’. In Qualitative Research in Health Care, C. Pope and N. Mays (eds), BMJ Books, London, 1999, pp. 89-101. Meana, M., Bunston, T., George, U., Wells, L. and Rosser, W., ‘Older immigrant Tamil women and their doctors: attitudes toward breast cancer screening’. Journal of Immigrant Health, vol. 3, 2001, pp. 5-13. Mintz, J.R., ‘Families’. In Hasidic People: A Place in the New World, J.R. Mintz, Harvard University Press, Cambridge, MA, 1994, pp. 60-70. Monaghan, J. and Just, P., Social and Cultural Anthropology, Oxford University Press, Oxford, 2000. Pargament, K.I., The Psychology of Religion and Coping: Theory, Research, Practice. The Guilford Press, New York/London, 1997. Phoenix, A. ‘Practising feminist research: the intersection of gender and race in the research process?’. In Researching Women’s Lives from a Feminist Perspective, M Maynard and J Purvis (eds), Taylor, London, 1995, pp. 49-71. Pope, C. and Mays, N., ‘Qualitative methods in health research’. In Qualitative Research in Health Care, C Pope and N Mays (eds), BMJ Books, London, 1999, pp. 1-10. Powe, B.D., ‘Cancer fatalism among elderly Caucasians and AfricanAmericans’. Oncology Nursing Forum, vol. 22, 1995, pp. 1355-59. Remennick, L., ‘The challenge of early breast cancer detection among immigrant and minority women in multicultural societies’. Breast Journal, vol. 12, 2006, pp. S103-S110. Rogers, S.A., Poey, E.L., Reger, G.M., Tepper, L. and Coleman, E.M., ‘Religious coping amongst those with persistent mental illness’. International Journal for the Psychology of Religion, vol. 12, 2002, pp. 161-75.

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______________________________________________________________ Sankar, P., Cho, M.K., Root Wolpe, P. and Shairer, C., ‘What is in a cause? Exploring the relationship between genetic cause and felt stigma’. Genetics in Medicine, vol. 8, 2006, pp. 33-42. Smith, J.A., ‘Beyond the divide between cognition and discourse: using the interpretative phenomenological analysis in health psychology’. Psychology and Health, vol. 11, 1996, pp. 261-71. Smith, J.A., Jarman, M. and Osborn. M., ‘Doing Interpretative Phenomenological Analysis’. In Qualitative Health Psychology, edited by M. Murray and K. Chamberlain, Sage, London, 1999, pp. 218-40. Tendler, M.D., Responsa of Rav Moshe Feinstein, Volume 1 Care of the Critically Ill. KTAV Publishing House, Hoboken, 1996. Westermeyer, J., ‘Cultural factors in clinical assessment’. Journal of Consulting and Clinical Psychology, vol. 55, 1987, pp. 471-78. Wilson, K. and Luker, K.A., ‘At home in hospital? Interaction and stigma in people affected by cancer’. Social Science and Medicine, vol. 62, 2006, pp. 1616-27.

Appendix A. Transcript Notation Italics denote emphasis. Dots within a quotation indicate a pause in speech. Material in square brackets [ ] is for the purpose of clarification and has been added by the author. Three dots within square brackets […] indicates where non-relevant material has been omitted to save space and aid coherence.

Note on Contributor Kate Coleman is a PhD student at the Centre for Behavioural and Social Sciences in Medicine, University College London.

The Politics and Poetics of Migrant Tuberculosis: Modelling a “Social Disease” in French Public Health Janina Kehr Abstract Tuberculosis, an old infectious disease, is still of particular importance for research in medicine and society today. This is on the one hand due to its epidemiological significance in the past and its implication in the history of biomedicine; and on the other hand due to its continuing, yet sometimes misrecognized social relevance in the present. The aim of the article is firstly to reveal French conceptions of a healthy society and its public politics through a look at the tensions in everyday tuberculosis control, by taking tuberculosis as a “boundary object” and a window of analysis for social relations. Secondly, the article proposes an ethno-graphic approach to medicine and public health by doing an ethnography of tuberculosis treatment politics, which co-analyzes medical epistemology and public health practice. The article argues that tuberculosis is able to function as a social marker of the contemporary, as multiple and unequal social relations in medicine and public health become visible when regarding tuberculosis control politics and treatment practices.

Keywords: Tuberculosis, public health, politics, treatment, migration, France, ethnography, aetiology, model

1.

Introduction Tuberculosis as an agent traverses history and human bodies, taking hold in some and leaving others in a contingent historical progression.1

The French course of tuberculosis during the 19th and 20th century is deeply intertwined with the history of industrialisation and demographic transformation in Europe, the history of public health as well as the history of modern biomedicine. Understanding present tuberculosis control in France necessitates a short introduction in the history of the “War on Tuberculosis,” taking into account the beginnings of public health measures of disease prevention and treatment at the end of the 19th century, their model of disease causation and transmission as well as the changes in the medical treatment

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______________________________________________________________ and the social epidemiology of this infectious disease during the preceding century. The tuberculosis control system, le système antituberculeux, was one of the first public health services to be set up at the beginning of the 20th century in France. Armed with new bacteriological knowledge about the microbiological nature of disease, laid out by Robert Koch in 1882, promoters of the official antituberculosis campaigns conceptualised tuberculosis control as an intervention, which should interrupt the chain of disease transmission, as the French microbiologist Charles Nicolle wrote: A determined disease is due to a determined germ, whose natural habitat is known and which contaminates men in known circumstances. One must thus cut off the link of epidemiological disease transmission at whatever point of the chain.2 In this objective, antituberculosis dispensaires were created as the first line of action. They should help prevent the spread of tuberculosis in impeding the transmission of disease by isolating the ill and by observing, informing and treating the local population through medical services.3 The main functions of the dispensaries were – and continue to be today – the dépistage, or the tracking down of those who might be infected with tuberculosis, as well as the distribution of primary health care and material assistance to their clientele. Thereby, dispensaries aimed their interventions at one specific subgroup of the population, known to be especially susceptible to tuberculosis: the poor.4 The measures taken through the dispensaries were mostly of preventive nature, as no medical cure for tuberculosis existed at the time, but activities concerned the medical and the social realm in parallel. The combination of the medical and the social, as represented by dispensaries, has been a very important feature of tuberculosis control, which is also mirrored in the dominant aetiology of tuberculosis at the end of the 19th century.5 With the rising prominence of the germ theory, the microbiological aetiology of tuberculosis and its definition as infectious disease became unquestioned. Nevertheless, environmentalist models of disease acquisition, which held a person’s living conditions responsible for the development of disease, figured just as prominently in explanations about the causes of tuberculosis. When Louis-René Villermé initiated a social epidemiology and showed differences in mortality according to a person’s living conditions in Paris, the social as important factor in the unequal distribution of mortality rates became scientifically accepted. Villermé concluded, that

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______________________________________________________________ wealth, affluence and poverty are for the residents of the various arrondissements in Paris – by the conditions in which they place them – the principal causes (I do not say the only causes) to which one must attribute the great differences in mortality.6 While the rise of germ theory changed the language in which tuberculosis was depicted and preventive strategies oriented towards a focus on microbes, many of the constituent elements of the early century’s aetiologies of tuberculosis (including heredity, overcrowding, filth and vice) maintained their status during the period of contagionism. Tuberculosis also continued to be viewed as social disease, through which social stratification became incorporated.7 Even with the advent of effective antibiotic therapy after the Second World War, the dominant aetiology of tuberculosis persisted in its trinity of personal, social and bacteriological causation factors. It was tuberculosis itself that underwent a radical trans-formation, from a well known but incurable illness to a treatable disease, which it continues to be today. From a contemporary biomedical perspective, tuberculosis can be defined as a treatable infectious disease caused by a particular germ, the mycobacterium tuberculosis, which is transmitted through the air. Basically there are two forms of tuberculosis: latent tuberculosis, which is not considered to be an illness in the strict sense, as there is an absence of symptoms, the bacterium being controlled by the immune system; and there is active tuberculosis which equals disease, as the mycobacterium is not controlled by the immune system and can multiply in the lungs or other organs to create an inflammation inside the human body, leading to symptoms of coughing, losing weight and pain. Tuberculosis is generally treatable through a combination therapy of four antibiotics, which normally has to be taken from six to twelve months. Despite its infectious, and thus partly contingent nature, tuberculosis does not affect populations equally. The social epidemiology of tuberculosis, that is the distribution of the disease among different population groups, has always been uneven, yet the composition of these groups has been changing in the course of the last 130 years. The processes which served to stratify and differentiate living standards characteristic of late 19th century France, including the effects of industrialisation with its low-wage labour, the long working days and the absence of social security, were then reflected in the epidemiology of tuberculosis: the hierarchy of mortality rates ran parallel to that of the social groups. This meant concretely, that mainly working class families in the urban centres were severely affected by tuberculosis at the turn of the 19th to the 20th century.8

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______________________________________________________________ In the 21st century, infection rates still seem to run parallel to social groups in France and other Western European countries. Yet the composition of the social groups concerned has changed. Nowadays, it is no more the poor working-class who is mainly affected, but migrants, who constitute, epidemiologically speaking, one of the most important high risk groups. A study published by the French epidemiological institute, the Institut de Veille Sanitaire, showed that between 1993 and 2003, 43.9% of tuberculosis patients did not have the French nationality, whereas they represented only 6% of the total population living on French metropolitan territory.9 The transformation of the social epidemiology of tuberculosis in the last twenty years – viewed in the light of its continuing definition as social disease – generates interesting research questions about the delineation of public health policies, about complex and competing models of disease and about medical practices. How is France’s contemporary tuberculosis control strategy defined today? Who is currently viewed as susceptible to suffering from tuberculosis? Which disease model dominates medical and political discourses today? And which problems become visible when disease models and medical practice are analytically crossed? To answer these questions I want to relate to three references, which inspired the title of the article. Firstly, there is the expression “Politics and poetics” which refers to the volume Writing Culture: The poetics and politics of ethnography, edited by James Clifford and George Marcus.10 This volume questions ethnographic authority and the politics of sense making in Western science. Secondly there is the article “Compliance versus adherence. Just a matter of language? The Politics and Poetics of Public Health,” written by Jennifer Ogden, which is an obvious reference to the Writing Culture book itself.11 Ogden analyses the practical consequences of the word compliance for public health approaches and thus investigates on the link between medical talk and medical practice. Thirdly, I refer to an article by Ming-Jung Ho, entitled “Sociocultural aspects of tuberculosis: a literature review and a case study of immigrant tuberculosis.”12 The article examines tuberculosis control approaches and their underlying assumptions in New York City in the aim of developing a theorization of tuberculosis that might have an impact on public health interventions targeting Chinese immigrants. Ho shapes in his article the term immigrant tuberculosis and uses it to name a specific variant of 21st century tuberculosis in the United States of America. What I want to distil out of the three references is twofold. On the one hand, I want to lean on the “linguistic turn” in cultural anthropology which stated that words and concepts have real consequences on everyday practice, that they are even performative of social reality, as Clifford and Marcus show. In this spirit I want to look at the role disease models can play in everyday medical practice, as Ogden does for public health policy. I will hereby define models as genres of sense-making construed through

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______________________________________________________________ differential representation of a phenomenon. Leaning furthermore on the relation between tuberculosis, immigration and society, as Ho’s article suggests, I want to look at the problems which the complicated relation between model and practice can generate and the ways those problems can be linked to larger conceptions of society and its politics by taking immigrant tuberculosis as an example. The objective of this article is threefold. I firstly want to plead for a new interest in tuberculosis, which is an old infectious disease, yet of particular importance: on the one hand due to its acknowledged significance in the past and its implication in the history of biomedicine; on the other hand due to its continuing, yet sometimes misrecognized social relevance in the present, being able to function as a social marker of the contemporary. Secondly, following a classical anthropological approach, the article wants to show what the tensions in everyday tuberculosis control can reveal about French conceptions of a healthy society and its public politics, when one takes tuberculosis as a “boundary object.”13 Finally, the paper is an effort to proposing an ethnographic approach to public health by doing an ethnography of treatment politics, which co-analyzes medical epistemology and practice. 2.

Modelling Disease: The Socioeconomic Aetiology of Tuberculosis “For the people, tuberculosis doesn’t exist anymore” 14 a nurse tells me during my fieldwork. A physician says: “It’s mainly migrants coming from sub-Saharan Africa who are most affected by tuberculosis.”15 Another physician explains: “Tuberculosis is a disease of misery. People who are in social and economic difficulties are certainly more frequently attained, unfortunately.”16 The three quotations above make sense of tuberculosis in a fairly common way, telling us what tuberculosis is, who the persons with tuberculosis are and why they are touched by this infectious disease. Firstly, tuberculosis is described as something that does not exist in France anymore. Tuberculosis is identified with the past, but no more with the present, it is seen as outdated. Secondly, tuberculosis is described as a disease affecting mainly migrants from African countries. Here, tuberculosis is attached to a French other.17 This other is constituted of people living in France while not being French, namely migrants, who are moreover defined through a geographic origin lying elsewhere, namely in Africa. Thirdly, tuberculosis is described as a disease which causes suffering mainly among socially and economically disadvantaged groups and it thus incorporates misery and social inequality. Or – turned around the other way – the last equation makes us assume that misery and social inequality favour the literal incorporation of the mycobacterium tuberculosis in poor populations.

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______________________________________________________________ In the three equations, tuberculosis is defined as a disease of the past, as a disease of the other and as a disease of misery and of social pathology, thereby linking it to French history, geography and society. An interesting disease model of tuberculosis thus emerges, which goes beyond an etiologic explanation of disease, incorporating epidemiology and societal representations. What seems interesting to me is that the established disease model does not focus on biomedically explaining what tuberculosis is or how it is caused, but that it defines tuberculosis by stating who is affected and why. I therefore want to speak of a tuberculosis disease model and leave aside, for the moment, the term aetiology of tuberculosis, as the expression model seems to suit better the modes in which tuberculosis is thought of and talked about. In general, models are of central importance in biomedicine. A model in its abstract form can be defined as a theoretical construct that represents something with a set of variables and a set of logical and quantitative relation-ships between them. Models in this sense are constructed to enable reasoning within an idealized logical framework about these processes and are an important component of scientific theories.18 The act of creating models means the process of generating a conceptual representation of some phenomenon, and thus is the act of abstractly referencing something that is imagined to exist in reality. In his work on experimental systems and epistemic things Hans-Jörg Rheinberger defines modelling as a process consisting of a backwards and forwards movement between different forms of representation in different representational spaces.19 What I am interested in is the co-analysis of models and practices. Looking at tensions that occur when one crosses tuberculosis models and treatment practices analytically is one way of taking it as a boundary object in order to understand the modes that tuberculosis is thought of and why. For my ethnographic purposes, I want to define models as genres of sense-making construed through differential representations of a phenomenon. As an anthropologist – scientist of “the other” and “the social” – I am particularly interested in understanding the last two features of the above described tuberculosis model, as they are very present not only amongst health professionals’ tuberculosis “talk” 20 in the field, but also in epidemiological and social science studies concerning this disease: tuberculosis as disease of the other and as social disease.21 What I will be looking at are the forms of tuberculosis representation in two concrete spaces of public health: the space of tuberculosis control in a dispensary, as well as

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______________________________________________________________ the space where public health policies are created, namely a departmental administration. In the following, I want to quote three statements from physicians, nurses and public health officers, which are typical for representations of tuberculosis: Tuberculosis is, in quotation marks, the disease of the poor; it is overcrowding, it is the absence of hygiene, it is people coming from difficult social backgrounds; it is those people who are hit by tuberculosis. 22 Tuberculosis is a disease of misery. It is not about being African, or Black, or Chinese, there are also Whites in the housing estates, there are people of the White race and of the Black race and of the Yellow race, if you wish. […] Tuberculosis is an infectious disease and fortunately it does not chose [its targets] by their skin colour. 23 Tuberculosis is a real social pathology. It is true, when you are unemployed, when your name is Mohammed, when you are living in a migrant’s hostel, when you have problems with your immigration documents, etc. your chance of being with 15 other people in a bedroom and thus to get tuberculosis is pretty high. 24 At first sight, the medical professionals represent tuberculosis in their above statements chiefly as a disease of people living in socio-economic difficulty. They explain that socially disadvantaged people are particularly exposed to tuberculosis, consequently attained of it more frequently, and that it is therefore the social background of a person which can be held responsible for the development of disease. It can thus be said, that a representation of the unequal epidemiology of tuberculosis is given by constructing it aetiologically as social disease, as social pathology or as disease of misery, to explain within a specific representational space, here epidemiology, why inequalities in tuberculosis acquisition, infection and disease development exist. One could name this model a socioeconomic aetiology of tuberculosis, which explains that despite the contingency of infection that some people have tuberculosis and others do not. This model, used by all the interviewed medical professionals, explains the unequal epidemiology of tuberculosis by modelling a unidirectional bio-social genesis of disease, social disadvantage leading to greater risk of exposition to the mycobacterium tuberculosis leading to higher frequencies of infection and disease (Table 1).

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______________________________________________________________ Yet a closer look at the statements reveals discrepancies concerning the exact composition of the social which is said to cause and deter-mine disease. The lack of content hints towards a confusion of the causalities and contingencies in the epidemiologic and aetiologic models of tuberculosis. In the first quotation, the nurse names rather vaguely who the social group affected by tuberculosis is composed of, using expressions like “the poor,” or “people coming from a difficult socio-economic back-ground,” leaving undetermined to what and to whom social or poor finally refers.

High frequency of infection and disease

Increased risk of exposition to mycobacterium tuberculosis

Overcrowding/absence of hygiene

Socio-economic conditions/misery/poverty

Table 1: Bio-social aetiology of tuberculosis In the second quotation, the interviewed physician too begins with a quite general statement about tuberculosis. He defines it as the disease of misery, implying on the one hand that it is misery that causes tuberculosis and that people living in misery are especially hit. It is vague what kind of misery he refers to, yet he concretizes that it is not about being African or Black. This implies that one cannot refer from epidemiology which states that African migrants are more often affected, to aetiology, which would mean that migration from Africa to France is a causation factor of tuberculosis. For the physician, variables such as race or geographic origin seem important in epidemiology, but their possible importance in the aetiology of tuberculosis is denied in favour of a rather unspecific socio-economic argument: tuberculosis is a social disease.

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______________________________________________________________ In the third statement, which is that of a public health officer, the causal relation between geographic origin and tuberculosis, rejected in the physician’s statement, is made explicit. The public health officer still puts forward, like the physician and the nurse, that tuberculosis is above all a social pathology, thereby emphasising the socio-economic aetiology of tuberculosis. He nonetheless makes explicit that it is yet mainly persons from Africa and migrants in general who are particularly at risk for tuberculosis, and that this is no coincidence. A space is thus left open for the inclusion of migration as variable in the aetiology of tuberculosis. As I have shown, tuberculosis as phenomenon is represented slightly differentially in each statement, with faint degrees of difference and with different causalities. In dissecting the statements of medical professionals, the aetiology of tuberculosis turns out to be woven together with the epidemiology of disease, even if health professionals are constantly trying to make distinctions between cause and distribution. The model of tuberculosis as social and migrant disease turns out to be multifaceted and variably sculpted, with some elements being underlined and others being denied or neglected at times. Referring in parallel fashion – but not indifferently – to epidemiology and aetiology, one could speak of an epidemiaetologic model of tuberculosis which is at work in French medical talk today, combining the relatively recent epidemiologic fact that migrants are especially touched by tuberculosis with the old aetiologic model of tuberculosis as a social disease. Going back to the theoretical model definition as genre of sensemaking construed through differential representation, one could say that models – selective and differentiating by nature – always enable and sup-port some kinds of sense-making, but also potentially impede or leave aside other kinds of reasoning. What seems thus interesting to ask is which kind of causal reasoning is permitted or emphasised in regard to the tuberculosis model, which kind of connections are impeded or neglected, and why the social conditions and the geographic origin of the patients are differentially referenced. To answer these questions, I want to link the tuberculosis model to treatment practice. This should help to explain how the model is shaped in medical encounters and what kinds of tensions are likely to occur. 3.

Treating Tuberculosis in Medical Practice: Models with(out) Consequences The physician asks the patient, who is about thirty years old, into the consulting room. The patient enters the room accompanied by a friend of his, who turns out to function as an interpreter. The patient originally comes from Mali. The nurse is already sitting in front of the doctor’s desk

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______________________________________________________________ when the patient comes in and I sit next to her. The doctor sits down behind the desk. The patient installs himself with his friend in front of the desk, facing the doctor, taking his seat next to the nurse. The consultation is a treatment follow-up session, an obligatory control after completion of tuberculosis treatment. The doctor starts asking some medical questions to the patient before examining him. The patient replies to the questions, being supported by his friend and interpreter. After the physical examination, the doctor sits down again behind his desk and asks: “Any news concerning your documents?” (Et les papiers, ca s’arrange?) In fact, documents stand for the legal status of the patient on French territory, his immigration status. The patient replies that he only had a temporary residence permit for tuberculosis treatment, which has now expired. He therefore wants the doctor to issue him a new disease certificate, so that he could extend his permit and stay in France legally. The doctor says he will not be able to do this, as his tuberculosis is cured. The only thing he could do, the doctor says looking at the patient, would be to confirm that he still needs follow-up treatment of tuberculosis. The nurse adds that the health centre unfortunately will not be able to help much treating his legal problems and that he, the patient, should not expect too much of the treatment follow-up certificate. Tuberculosis is a curable disease, she continues, and temporary residence permits for tuberculosis treatment are not prolonged once medical cure is achieved. She asks nevertheless if the patient wishes to have a consultation with the social worker of the health centre. The patient answers yes but leaves the consultation room dejected. As soon as the patient has left the room, the nurse explains to me: This is a sad but frequently happening story. Yet we are unable to do much. Many patients try to get a temporary residence permit which is not prolonged once they are treated and their tuberculosis is cured. For tuberculosis, the time frame is very limited, maybe nine months, a year at best. I think that this temporary residence permit is not necessarily a good thing to apply for if one wants to stay in France, if one has tuberculosis.

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______________________________________________________________ The consultation – involving a patient who originally comes from Mali, a French physician and a French nurse – shows that not only the medical treatment of tuberculosis is on the agenda. The consultation reveals that problems which are not medical in the strict sense also need to be addressed, such as the legal status of the patient on French territory, the capacities of communication between French medical staff and their foreign patients, and the implication of other public professionals like social workers. One could therefore suspect, as I did at the beginning of my research, that the health centre tries to target migrant populations in a special way, knowing through everyday experience what kind of incidents need to be coped with on a daily basis. Doing so, I asked the doctors of the health centre whether a specialized approach for risk groups, such as mi-grants, existed and what they thought about it. During the interviews, I could hear the following answers to my question: One needs to treat tuberculosis where it lies, but one mustn’t stigmatize. In a country where migrants are easily blamed, people tend to quickly say ‘it’s the immigrant’s fault’ or ‘it’s the Africans’ fault.25 The group which is mainly affected by tuberculosis is migrants from sub-Saharan Africa. […] But I don’t think that we have a specialized approach for those people. We treat tuberculosis the same way, whether it is a Malian or a North-African or a Turk who is affected. I think that we should mainly address the social problems of every subject.26 In their statements about their everyday work, the physicians combine different views regarding tuberculosis treatment and those concerned. On the one hand, they confirm to experience every day the epidemiologically stated fact that migrants from Sub-Saharan Africa are especially concerned by tuberculosis, that migrants constitute – epidemiologically speaking – a ‘high risk group.’ In their medical practice, physicians treat African migrants on a daily basis. Yet at the same time, the doctors seem hesitant if not recalcitrant to openly draw consequences of the link between tuberculosis and migration. Instead, one physician pleads in a politically correct spirit of destigmatization to not stress the high incidence of tuberculosis among African migrants in France when modelling it. (It is the same physician who emphasised sooner that there was no causal link between skin colour and tuberculosis, thereby relying on a microbiological aetiology of tuberculosis). The other physician explains the absence of a specialized approach through

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______________________________________________________________ an argumentative move stressing that social problems in general needed to be addressed rather than specific problems migrants could experience, even if they might be co-responsible for the development of disease. To sum up one could say that in the doctor’s explanations to me, the model of tuberculosis as migrant disease is experienced in everyday medical practice and acknowledged in the epidemiological realm. Yet when it comes to questions of aetiology and treatment, as I have already hinted towards, tuberculosis as migrant disease is replaced by the model of tuberculosis as social disease. This model acknowledges social difference as the cause of tuberculosis and therefore as the basis of treatment solutions, but at the same time denies ethnic, racial or cultural difference as the causes of tuberculosis and thus as possible starting point for differential treatment approaches. As I have tried to show, a general consensus in modelling tuberculosis exists despite the different forms the tuberculosis disease model might take on: tuberculosis is a social disease. This representation of tuberculosis as social pathology aims to account for two points: for the unequal distribution of tuberculosis among different social groups, its epidemiology, as well as for the social causes of this disease, like poverty and bad housing conditions. Social inequality is thus seen as causing the disease as well as distributing it unequally in society. There is a second consensus which refers to the unequal distribution of tuberculosis among French nationals and migrants, defining tuberculosis as a disease which mainly affects migrants. This epidemiological consensus generates discomfort and confusion within the model of tuberculosis as social disease, acknowledging on the one hand the link between migration, bad living conditions and a high incidence of tuberculosis in migrant populations yet not defining migration or geographical origin as causation factor for disease. Where social difference seems to have been acknowledged as a cause of disease, geographical origin does not yet figure unanimously in the aetiology of tuberculosis, if it is not via the detour of the social. There are pragmatic explanations and political reasons for the differential representations of tuberculosis, one time as social pathology in the realm of aetiology and one time as migrant disease in the realm of epidemiology. In epidemiological studies, a link between the frequency of tuberculosis and the origin of a patient is demonstrated, which is mirrored in medical encounters in dispensaries, where patients are mainly migrants. At the same time, no specialized approach is proclaimed in everyday tuberculosis treatment and prevention in dispensaries to specifically target migrants at risk, even if concrete problems migrants might experience, as their legal status or housing problems are addressed through collaborative work with social workers in practice. Despite the everyday experiences with migrant patients and the effort to address specific problems, a specialized approach for migrants is even explicitly denied. This is done in a spirit of

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______________________________________________________________ equality which wants to prevent further discrimination or stigmatization of migrants in France, as I have shown in citing the hesitation of physician to distinguish between different groups of patients depending on their geographic origin. A treatment ideal is put forward instead, which wants to address the social living conditions of every individual, whether this person is a migrant or not. In practice, this treatment ideal is realized only partially, as structural social problems cannot easily be addressed in medical en-counters. One can see a tension which is generated. It builds up between a utopia of action and pragmatic tuberculosis treatment in the field. The utopia of action could be described as the wish for an equal treatment of everybody combined with the desire for more fundamental socio-political interventions on the living conditions of every subject. This utopia is adapted in everyday medical encounters and pragmatic treatment politics emerge in the field. They are characterized for physicians by the ability to change the physical status of their patients by curing tuberculosis medically and the inability to alter the social status of the patient having only very restricted possibilities to influence their socio-political well being. One could thus say that physicians, nurses and social workers in the field open up a space of (un-)limited politics of treatment. They act in this space which is doubly ambiguous, being situated between the sanitary and the social and between a utopia of action and the pragmatics of everyday work. This space is characterized by a desire to act and the limits of acting possibilities in regard to the social and political conditions in which their patients, who are mainly migrants, live. The space I describe here extends between a specific ideal of a healthy egalitarian society and a social reality, which is pretty crude at times, creating a tension which is not solvable in medical practice. This tension is not limited to tuberculosis politics of treatment, but it is foundational for French republican politics, where an egalitarian, republican ideal – liberté, égalité, and fraternité – collides with unequal socio-political realities every day. The republican ideal of égalité seems to enter not only medical practice, but also physicians’ reasoning about tuberculosis and its treatment strategies. There is, for example, physicians’ opposition to a specialized approach for migrants, who argue that in the face of infection, everybody is the same. Thereby they implicitly refer to the republican idea of equality, yet by referencing biology and a bacteriological model of disease: égalité becomes the equivalent to biological sameness. There is, furthermore, the hesitation of physicians to explicitly link tuberculosis with migrants in France for political reasons, namely the danger of a further stigmatization of their patients, who as migrants are already discriminated against in French society. This mode of reasoning also refers to the republican idea of equality, this time égalité becoming the equivalent of egalitarian socio-political treatment.

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______________________________________________________________ In the physicians’ quotations, political caution and a republican spirit of equality is used to make sense of the unequal social relations in the guise of tuberculosis physicians are confronted with everyday. Yet as Didier Fassin and Eric Fassin show in their edited book De la question social à la question raciale, the republican question of social relations, la question sociale, is in France also already a question of racial relations, une question raciale, even if rarely being addressed as such in public.27 In explicitly talking about the articulation of the question of racial and social relations, the essays in the Fassin and Fassin volume want to understand the modes through which French society represents itself to itself, thereby analysing the plurality of representational logics at work while linking them to political questions of the nation, immigration and colonisation. In this line of thinking, the representations of tuberculosis and those attained seem to me to be a good way of examining the articulation of different representational logics in the French public sphere, here of medicine, public health and immigration politics. The questions of racial relations, which Didier Fassin treats in the cited book through the lens of racial discrimination, is neither addressed openly by the physicians nor by the public health officers, despite an experienced social reality in medical practice where tuberculosis patients are for a large part “Black” African immigrants. 28 Yet rather than openly asked, the question of geographic origin or “colour” as important factor in the unequal tuberculosis incidence is replaced through reference on general social problems as the fundamental causes of epidemiologic inequality. Thereby the experienced and epidemiologically proved fact that patients are mostly African migrants is obscured.29 Furthermore, the causes of the unequal distribution of tuberculosis among French nationals and African immigrants are explicitly said to not be a question of “skin colour” or “race,” but a question of social relations, underpinned through the biological argument that bacteria do not choose their targets according to their skincolour. Thereby, racial discrimination as a possible factor in unequal social relations is denied through modelling tuberculosis as contingent bacteriological infection. As topics of societal and political importance are articulated within the space of tuberculosis control, political, social and medical discourses are intertwined, making sense of tuberculosis in different and sometimes conflicting ways. In analysing the representations of tuberculosis, that is its causation and distribution models, mechanisms of social, racial and biological differentiation and negation become apparent in France’s representation of French society today, which can be inscribed in the complementary logics of medical naturalising and republican socialising.

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______________________________________________________________ 4.

The Politics of Tuberculosis Control: Deconstructing the Social There is another model of the causes and causalities of tuberculosis circulating in the representational space which is public health, adding a third component to the socioeconomic tuberculosis model thereby complicating its linearity: politics (compare table 1 and 2). If there was something to do it would be to intervene on the health determining factors. This would make a difference. […] We can do prevention and treatment of tuberculosis, this is trivial. […] What one would have to do was undertaking more global political actions.30 In this statement of a public health officer who is responsible for the making of tuberculosis control programs, it is political action, or rather the absence of it, which is said to impede the control of tuberculosis. Global political actions on the health determining factors are demanded to solve the tuberculosis problem instead of the focus on prevention and treatment of the disease alone. Politics thus enters the epidemiaetology of tuberculosis and its treatment approaches, adding a new component to the model described above (see table 1). I would like to cite one more statement of another public health officer, also involved in the making of tuberculosis control programs. It is incredible and inconceivable that the tuberculosis incidence in a highly developed country like France does not diminish. I think this is exclusively, or in great parts, due to an absence of political will to take care of … homeless persons, of people living in a migrant’s hostel. … But one would also need to take care of the immigration problem in France in general like the living conditions of the migrants in their host country.31 In the statement, the public health officer models a direct and causal relation not only between tuberculosis control and public politics in general, but between tuberculosis and immigration politics specifically. She thus links the socio-political situation of migrants in France directly to the development of tuberculosis by admitting migrant’s specific socio-political situation to the realm of aetiology. Contrary to the statements of physicians, the public health officers describe not so much a general social which would determine higher rates of tuberculosis among migrants and disadvantaged populations, but instead public politics which account for the failure of tuberculosis control in France

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______________________________________________________________ and the development of disease in a society fractured by social inequality. An explicit relation is thereby set up between the unequal health status of persons living on French territory according to their nationality and the French political system, which does not treat them decently. The tuberculosis model becomes more complex, as a causal relation between public politics and disease is created, which – taken radically – admits public politics as direct causes for tuberculosis, not only via the detour of social conditions (see table 2). In the model, tuberculosis incidence becomes a marker of asymmetrical public politics which do not create politics for, but against, certain kinds of people, in this case migrants, putting them at higher risk for tuberculosis. Here, tuberculosis incidence is used as a tool to critique the French political system.

Tuberculosis

Unequal social conditions

Public politics

Table 2: Political epidemiaetology of tuberculosis Tuberculosis as a means of political opposition has its radical predecessors in the 19th century syndicalism.32 For left-wing syndicalists at the turn of the century, the causes of tuberculosis were to search in the political realm rather than in the bacteriological or social area. Marc Pierrot, a medical doctor and syndicalist, wrote: Tuberculosis is an illness of poverty. It is the direct product of capitalist exploitation. There is only one real way to combat tuberculosis, and that is to transform society, to abolish wage labour, to assure everyone of well-being through common ownership of the means of production.33 For Pierrot, the real causation factor of tuberculosis was capitalism and its unequal class relations.

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______________________________________________________________ Coming back to the present and following a tradition of the philosophy of science and medicine which is interested in the sociological basis of scientific statements and their underlying politics, one could say that the differing interpretations public health officers and medical doctors give of the tuberculosis model and the treatment approaches today is due to their goals and duties which are not the same: the physician has to take care of the sick individual, with immediate needs, while the public health officers are concerned with the population as a whole, and have more distant and political goals.34 One could further argue that the definition of tuberculosis as either social and/or political disease reflects gradients of political critique, depending on the implication in politics or political op-position. Yet even if the last interpretation would resonate with the public health officers (both work in regions governed by the French communist party, while the national government is ruled by the conservatives), it would also be too simplistic. In practice, roles, duties and political orientations are not always clearly demarcated and proclaimed. Physicians are often responsible for a tuberculosis control program yet practicing in a health centre or hospital at the same time, thereby being able to take on different “frames of reference” depending on their momentary occupation, which can be more or less political.35 This is one reason why I asked what the different uses and interpretations of the tuberculosis model among migrants revealed about the tension in French public health and public politics, rather than focusing on the different professional roles, duties and orientations. Another reason is that the sociological interpretations one could apply would not account for the general importance of universalistic social explanation models in France, which are present in society, independent of political orientations. As I have shown, a republican mode of reasoning is at work in medical practice, where the ancient model of tuberculosis as social disease is but strengthened, parallel to the everyday experience that tuberculosis is mainly a disease of African migrant patients. Thereby racial discrimination as a possible factor in unequal social relations is denied and the French republican ideal of ethnic égalité is referenced through modelling tuberculosis as social disease and contingent bacteriological infection. Yet in public health, there is a third representational logic that comes into view when analysing the model of tuberculosis, which is merely political. Even if the direct question of unequal racial relations is still largely blinded out in modelling tuberculosis, despite its practical “evidence,” it enters at the point, where a causal link between migrants’ bad living conditions in France and a high incidence of tuberculosis in the African migrants’ community is proclaimed. In the example of a public health officer’s statement I cited above, unequal racial relations are not explicitly criticized, yet immigration policies are. Thereby tuberculosis is defined as a “political disease” and a space of societal critique is opened up. Even if this

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______________________________________________________________ space of critique seems to be colour-blind, the actors operating in this space do not deny a causal link between tuberculosis incidence and African immigration. They rather stress this link by politicizing epidemiological difference. Through the detour of the political, the question of unequal racial relations is modelled for the concrete example of tuberculosis epidemiology by explicitly linking migrants’ bad living conditions, French migration policies and a high incidence of tuberculosis in African migrant communities, thereby defining the “social fact” that tuberculosis in France is largely a disease of African immigrants politically. Thus practical reflections on how targeting migrants carefully, thoughtfully and differently and adapting to their specific socio-political situation are permitted, and not wiped away, by the idea of universal re-publican equality, which is strongly anchored in the French public space. In the article I tried to show that taking tuberculosis as an object of anthropological investigation can answer different levels of questions, from questions concerning the tuberculosis disease model in medical practice to questions concerning larger models of social and political relations in France. I argued that tuberculosis control in the field can be regarded as a space of (un-)limited politics of treatment, where tensions between a utopia of action and everyday work become visible, which are also mirrored in republican representations of French society today. I want to finish this article in promoting the validity of an anthropological approach, which is interested in the politics of models and practices at the same time, in order to make sense of medico-social phenomenon in society today. In this spirit, politics of treatment seem to me one possible way of cross reading the practicalities of medical encounters with the models of disease, while tuberculosis as socio-political marker of the contemporary can figure as a step stone to making sense of social relations today. 36 Politics of treatment, as a concept and as a way of problematizing, can thus be taken as a possibility to analyse, question and conceptualise medical encounters in a way that is open to the poetics and politics of everyday medical practice and public health.

Notes 1

G Bowker & S Star, Sorting Things Out. Classification and Its Consequences, The MIT Press, Cambridge, London, 2000. 2 Personal translation from the following French citation : “Une maladie determinée est due à un germe déterminé dont on connait la nature de l’habitat et qui contamine l’homme dans des circonstances connues. Il s’agit donc de couper l’un des chaînons de la transmission épidémiologique en un

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______________________________________________________________ point quelquonque ”. Cited after F Lert ‘Emergence et devenir du système de prise en charge de la tuberculose en France entre 1900 et 1940’. Social Science and Medicine, vol. 23, 1982, p. 2075. 3 Germ theory contributed to the “rationalization” of tuberculosis control, which became less concerned with a global alteration of sanitary conditions, as with the creation of public health services specialised in combating the disease. See Lert, op. cit., p. 2078. 4 D Barnes, The Making of a Social Disease. Tuberculosis in NinenteenthCentury France, University of California Press, Berkeley, 1995, p. 99. 5 Aetiology can be defined as the study of causation. In medicine, the term refers to the causes of diseases. 6 Cited after Barnes, op. cit., p. 33. 7 Barnes, op. cit., p. 40-42; Lert, op. cit., p. 2078. 8 Barnes, op. cit., p. 138-172. 9 D Che & D Bitar, ‘Les cas de tuberculose déclarés en France 2003’. Bulletin épidémiologique hebdomadaire, vol. 17-18, p. 67. 10 J Clifford & G Marcus, Writing Culture. The Poetics and Politics of Culture, University of California Press, Berkley, 1986. 11 J Ogden, ‘Compliance versus adherence. Just a matter of language? The Politics and Poetics of Public Health’ in G Porter & J Grange (eds), Tuberculosis. An interdisciplinary perspective, Imperial College Press, Singapore, 1999, pp. 213-233. 12 M Ho, ‘Sociocultural aspects of tuberculosis: a literature review and a case study of immigrant tuberculosis’. Social Science and Medicine, vol. 59, 2004, pp. 753-62. 13 I refer to Bowker’s and Starr’s conception of boundary object yet enlarging it: “Boundary objects are those objects that inhibit several com-munities of practice and satisfy the informational requirements of each of them. […] Such objects have different meanings in different social worlds but their structure is common enough to more than one world to make them recognizable, a means of translation”. See G Bowker & S Starr, op. cit., p. 297. In using Bowker’s and Starr’s definition freely, I state that boundary objects are not only means to make translation between different social worlds possible, for example between lay and expert worlds, but that they can also be seen as giving hints towards the understanding of the social and political conceptions underlying these objects. 14 “Pour les gens, la tuberculose n’existe plus.” (After my field notes, 30 March 2005) 15 “Le groupe prépondérant de la tuberculose, c’est des sujets migrants, originaires d’Afrique subsaharienne” (Interview with a physician, 29 April

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______________________________________________________________ 2005). 16 “La tuberculose, c’est la maladie de la misère. C’est sûr que la tuberculose est plus fréquente chez des gens qui ont des difficultés sociales et économiques, malheureusement” (Interview with a physician, 26 April 2005). 17 I use the term other as a concept in the tradition of post-colonial studies. I regard the other not as ontologically different from an assumed self, but both as results of a differential co-construction. For a classic post-colonial theory reference see G C Spivak, ‘Can the Subaltern Speak?’ C Nelson and L Grossberg (eds), in Marxism and the Interpretation of Culture, University of Illinois Press, Urbana, 1988, pp. 271-313. 18 ‘Model (abstract)’, in Wikipedia, the free encyclopedia, Wikimedia Foundation, Inc., 19 January 2007, viewed on 25 January 2007, http:// en.wikipedia.org/wiki/Model_%28abstract%29. 19 H-J Rheinberger, Experimentalsysteme und epistemische Dinge. Eine Geschichte der Proteinsynthese im Reagenzglas, Wallstein Verlag, Göttingen, 2001, p.116. 20 With the expression tuberculosis talk I refer to a body of literature in medical anthropology which is interested in the way medical problems are framed, talked about and made sense of by different parties. I am particularly interested in the divergent ways problems are constructed by health professionals. See also P Atkinson, Medical talk and medical work. The Liturgy of the Clinic, Sage Publications, London, 1995, and A Radley & M Billig ‘Accounts of health and illness. Dilemmas and representations’. Sociology of Health and Illness vol. 18, 1996, pp. 220-240. 21 See the following references: D Barnes, The Making of a Social Disease. Tuberculosis in Ninenteenth-Century France, University of California Press, Berkeley, 1995. D Che & C Bitar, ‘Epidemiology of tuberculosis in France in 2003’. Bulletin de l’Academie Nationale de Médecine, vol. 189, 2005, pp. 1257-69; A Dievler & G Pappas, ‘Implications of social class and race for urban public health policy making: a case study of HIV/AIDS and TB policy in Washington’. Social Science and Medicine, vol. 48, 1999, pp. 1095-1102; P Farmer, Infections and Inequalities. The Modern Plagues, University of California Press, Berkeley and Los Angeles, 1998; M J Ho, ‘Migratory journeys and tuberculosis risk’. Medical Anthropology Quarterly, vol. 17, 2003, pp. 442-58; M J Ho, ‘Sociocultural aspects of tuberculosis: a literature review and a case study of immigrant tuberculosis’. Social Science and Medicine, vol. 59, 2004, pp. 753-62; J Paluzzi, ‘A social disease/a social response: lessons in tuberculosis from early 20th century Chile’. Social Science and Medicine, vol. 59, 2004, pp. 763-73.

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“La tuberculose, c’est entre guillemets la maladie du pauvre, c’est la promiscuité, c’est le manque d’hygiène, c’est des gens qui sont de milieux sociaux difficiles, c’est ces gens-là qui sont touchés par la tuberculose”. (Interview with a nurse, 9 February 2005). 23 “La tuberculose, c’est la maladie de la misère. Ce n’est pas d’être africain, ou noir, ou chinois, là, dans les cités, il y a bien des gens de race blanche comme de race noire comme de race jaune, si vous voulez. […] La tuberculose est une maladie infectieuse et heureusement qu’elle ne choisit pas en fonction de la couleur de la peau.” (Interview with a physician, 25 April 2005). 24 “La tuberculose est une vraie sociopathie. C’est vrai quand vous êtes au chômage, si vous vous appelez Mohammed, si vous êtes dans un foyer pour travailleurs migrants, si vous avez des problèmes avec les papiers, etc., vous avez plus de chance d’être à quinze dans une chambre et d’attra-per la tuberculose.” (Interview with a public health officer, 5 April 2005). 25 “La tuberculose, il faut essayer de la traiter où elle est, il faut pas stigmatiser, parce que dans un pays quelquefois il est facile de dire ‘c’est la faute de l’immigré’, ‘c’est de la faute du Turc’ en Allemagne, ‘c’est de la faute de l’Africain’ en France” (Interview with a physician, 25 April 2005). 26 “Le groupe prépondérant de la tuberculose, c’est des sujets migrants, originaires d’Afrique subsaharienne. [...] Je ne crois pas qu’il y ait ici sur place des versions personnalisées. On prend en charge la tuberculose chez un Malien de la même façon qu’on la prendrait chez un Nord-Africain ou chez un Turc. Je crois ensuite que ce qui est à prendre en charge, c’est surtout le problème social de chaque sujet” (Interview with a physician, 29 April 2005). 27 D Fassin & E Fassin, De la question sociale à la question raciale? Représenter la société francaise, La Découverte, Paris, 2006. 28 D Fassin ‘Du déni à la dénégation. Psychologie politique de la représentation des discriminations’ in D Fassin & E Fassin (eds), De la question sociale à la question raciale? Représenter la société française, La Decouverte, Paris, 2006, pp. 133-157. 29 Blindness here refers to the term colour-blind, where racial differences are denied in an universalist ideal of egality. See E Fassin ‘Aveugle à la race ou au racisme? Une approche stratégique’, in Fassin & Fassin (eds), De la question sociale à la question raciale?, pp. 106-130. 30 “S’il y a quelque chose à faire, c’est intervenir sur les déterminations de la santé. C’est ça qui ferait une différence. C’est vrai quand vous êtes au chômage, si vous vous appelez Mohammed, si vous êtes dans un foyer pour travailleurs migrants, si vous avez des problèmes avec les papiers, etc., vous avez plus de chance d’être à quinze dans une chambre et d’attraper la

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______________________________________________________________ tuberculose. On fait le dépistage, le traitement, c’est trivial. [...] Ce qu’il faudrait, c’est être dans des actions de politique plus globale” (Interview with a public health officer, 5 April 2005). 31 “L’incidence de la tuberculose dans un pays aussi développé que la France ne diminue pas, c’est invraisemblable, c’est inenvisageable. Je pense que c’est dû exclusivement, en tout cas c’est dû en grande partie à une absence de volonté politique de prendre en charge et donc de résoudre le problème social, de s’occuper vraiment des SDF, des personnes dans les foyers. [...] Mais il faut aussi s’atteler au problème de l’immigration en France, les conditions d’accueil de la France” (Interview with a physician coordinating a tuberculosis control programme, 29 April 2005). 32 See Barnes, op. cit., p. 215-246. 33 Cited after Barnes, op. cit., p. 241. 34 H Engelhardt ‘The concepts of health and disease’ in H.T. Engelhardt & S.F. Spicker (eds), Evaluation and explanation in biomedical the sciences, Reidel, Dodrecht, 1975, pp. 125-141. 35 N Dodier, ‘Expert medical decisions in occupational medicine: a sociological analysis of medical judgement’. Sociology of health and illness, vol. 16, 1994, pp. 489-514. 36 As I do not have the space to elaborate my conception of politics of treatment, I refer to my unpublished master thesis J Kehr, Les politiques de traitement de la tuberculose. Une enquête en Saint-Saint-Denis, Mémoire de DEA sous la direction de Didier Fassin, Ecole des hautes etudes en sciences socials, Paris, soutenue en november 2005. I refer furthermore to two references, whose conceptions of politics and handling have inspired my master thesis. These are: E Laclau & C Mouffe, Hegem-ony and socialist strategy. Towards a radical democratic politics, Verso, London, New York, 1985; A Mol, The Body Multiple. Ontology in Medi-cal Practice, Duke University Press, Durham, 2001.

Bibliography Atkinson, P., Medical Talk and Medical Work. The Liturgy of the Clinic. Sage Publications, London, 1995. Barnes, D., The Making of a Social Disease. Tuberculosis in NineteenthCentury France. University of California Press, Berkeley, 1995.

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______________________________________________________________ Bowker, G. & S. Star, Sorting Things Out. Classification and its Consequences. The MIT Press, Cambridge, London, 2000. Che, D. & D. Bitar, ‘Epidemiology of tuberculosis in France in 2003’. Bulletin de l’Académie Nationale de Médicine, vol. 189, 2000, pp. 1257-69. Che, D. & D. Bitar, ‘Les cas de tuberculose déclarés en France 2003’. Bulletin épidémiologique hebdomadaire, vol. 17-18, 2005, pp. 66-69. Clifford, J. & G. Marcus, Writing Culture. The Poetics and Politics of Ethnography. University of California Press, Berkeley, 1986. Dievler, A. & G. Pappas, ‘Implications of social class and race for urban public health policy making. A case study of HIV/AIDS and TB policy in Washington’. Social Science and Medicine, vol. 48, 1999, pp. 1095-1102. Dodier, N., ‘Expert medical decisions in occupational medicine. A sociological analysis of medical judgement’. Sociology of health and illness, vol. 16, 1994, pp. 489-514. Engelhardt, H.T. & S.F. Spicker (eds), Evaluation and explanation in the biomedical sciences. Reidel, Dodrecht, 1975. Engelhardt, H. T., ‘The concepts of health and disease’ in H.T. Engelhardt & S.F. Spicker (eds), Evaluation and explanation in the biomedical sciences, Reidel, Dodrecht, 1975, pp. 125-141. Farmer, P., Infections and Inequalities. The Modern Plagues. University of California Press, Berkeley, Los Angeles, 1998. Fassin, D. & E. Fassin, De la question sociale à la question raciale? Représenter la société française. La Découverte, Paris, 2006. Fassin, D., ‘Du déni à la dénégation. Psychologie politique de la représentation des discriminations’ in D. Fassin & E. Fassin (eds), De la question sociale à la question raciale? Représenter la société française, La Découverte, Paris, 2006, pp. 133-157.

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______________________________________________________________ Fassin, E. ‘Aveugle à la race ou au racisme? Une approche stratégique’ in D. Fassin & E. Fassin (eds), De la question sociale à la question raciale? Représenter la société française, La Découverte, Paris, 2006, pp. 106-130. Grange, D. & J. Porter (eds), Tuberculosis. An interdisciplinary perspective. Imperial College Press, Singapore, 1999. Ho, M., ‘Migratory journeys and tuberculosis risks’. Medical Anthropology Quarterly, vol. 17, 2003, pp. 442-58. __________ ‘Sociocultural aspects of tuberculosis: a literature review and a case study of immigrant tuberculosis’. Social Science and Medicine, vol. 59, 2004, pp. 753-62. Kehr, J., Les politiques de traitement de la tuberculose. Une enquête en Seine-Saint-Denis, Mémoire de DEA sous la direction de Didier Fassin, Ecole des hautes études en sciences sociales, Paris, soutenue en novembre 2005. Laclau, E. & C. Mouffe, Hegemony and socialist strategy. Towards a radical democratic politics. Verso, London, New York, 1985. Lert, F., ‘Emergence et devenir du système de prise en charge de la tuberculose en France entre 1900 et 1940’. Social Science and Medicine, vol. 23, 1982, pp. 2073-2082. Mol, A., The Body Multiple. Ontology in Medical Practice. Duke University Press, Durham, 2001. Nelson, C. & L. Grossberg (eds), Marxism and the Interpretation of Culture. University of Illinois Press, Urbana, 1988. Ogden, J., ‘Compliance versus adherence. Just a matter of language? The Politics and Poetics of Public Health’ in D. Grange & J. Porter (eds), Tuberculosis. An interdisciplinary perspective, Imperial College Press, Singapore, 1999, pp. 213-233. Paluzzi, J., ‘A social disease, a social response. Lessons in tuberculosis from early 20th century Chile’. Social Science and Medicine, vol. 59, 2004, pp. 763-773.

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______________________________________________________________ Radley, A. & M. Billig, ‘Accounts of health and illness. Dilemmas and representations’. Sociology of Health and Illness, vol. 18, 1996, pp. 220-40. Rheinberger, H.-J., Experimentalsysteme und epistemische Dinge. Eine Geschichte der Proteinsynthese im Reagenzglas. Wallstein Verlag, Göttingen, 2001. Spivak, G. C., ‘Can the Subaltern Speak?’ in C. Nelson & L. Grossberg (eds), Marxism and the Interpretation of Culture, University of Illinois Press, Urbana, 1988, pp. 271-313.

Note on Contributor Janina Kehr is a Ph.D. student of cultural anthropology at the Ecole des hautes etudes en sciences sociales Paris and the Humboldt Universität zu Berlin. Her main research fields are medical anthropology, the history of colonial medicine and science studies. She has conducted fieldwork in France and Germany.

Woman as Mysterious Machine: Metaphor, Rhetoric and Female Sexual Dysfunction Monica Brown Abstract This paper, which performs a rhetorical analysis of the relationship of female pleasure to the construction of female sexual dysfunction (FSD) as a medical diagnosis, aims to isolate the metaphors that allow for the conditioning of female pleasure as a medical problem, and how those metaphors produce the value of female sexuality within North American pharmaceutical culture. I argue that the medicalisation of FSD exists with-in a larger narrative of the vice of female sexuality, and of the devaluation of female pleasure within Western culture, but that, as Meika Loe argues in The Rise of Viagra, such narratives persist within a masculine medical model of pleasure dominated by the metaphor of the body as a ‘biochemical machine’ with pleasure faculties that can be easily switched on and off. The alternative to such a conception, as a rhetorical approach will emphasize, has been to persuade of female pleasure as a ‘hidden,’ ‘mysterious,’ ‘complicated’ and therefore largely misunderstood aspect of a woman’s sexuality. Regardless of its outcome, the search for a female Viagra – for a cure to FSD – rhetorically produces the character of female sexuality, constructing, constraining, and quite literally confusing her access to pleasure. Research into pleasure and FSD supports this claim by demonstrating that the search itself provides the terms through which one may speak of feminine sexuality, terms that can be seen as not only prohibitive in that they limit attitudes toward female pleasure, but that, through limiting attitudes, also limit access to pleasure. Keywords: rhetoric, metaphor, female sexual dysfunction, biomedicine, Viagra

On 27 March 1998, the Food and Drug Administration approved the first pill to be used for the treatment of erectile dysfunction, a drug originally developed by pharmaceutical conglomerate Pfizer for use in hypertension, but that was far more successful in alleviating erectile difficulties. Sildenafil citrate, marketed by Pfizer under the trade name Viagra, immediately sparked huge interest among men seeking to improve their sex lives; between 1999 and 2001, these men purchased more than one billion dollars worth of Viagra to help them overcome erectile dysfunction (ED). As the popularity of the ‘little blue pill’ grew to impressive proportions, so too increased reports of its off-label use, sometimes by groups of men who believed that it would

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______________________________________________________________ enhance overall sexual performance, and other times by young adults attracted to the allure of Viagra as an aphrodisiac and party accessory. Yet, the Viagra phenomenon also triggered interest among North American women, who questioned, ‘Will Viagra work for us too?’ – and so began the search for both a ‘female Viagra,’ and for a proper medical diagnosis of the sexual problems unique to the opposite sex. Meika Loe, author of The Rise of Viagra, focuses a chapter of her book on the effect Viagra has had on medical research into female sexual health problems. Unlike the search for Viagra, which progressed from the diagnosis of ED to its treatment with Sildenafil citrate, Loe and others have noted that the search for the female Viagra has worked backwards: from treatment of female sexual ailments with off-label prescriptions of Viagra to the establishment of a medical diagnosis for a wider range of female sexual difficulties, bracketed under the umbrella term female sexual dysfunction (FSD). While medical experts have enthusiastically tackled the task of producing a medical category for the distinction of female sexual difficulties – most notable among them the director of the Institute for Sexual Medicine at Boston University and self-styled FSD expert Dr. Irwin Goldstein – Loe emphasizes in “The Search for the Fe-male Viagra” that interest in such medical research also stems from the commodification of sexual health problems within mainstream media, predominantly through the highly successful marketing of Viagra as a treatment for ED. Loe writes that “Popular television shows pick up on this Viagra-for-women theme and glamorize the idea of women taking Viagra, as well as [the idea of] a new female sexual aggression and insatiability,” an observation which suggests that, alongside medical expertise, values about female sexuality play an important role in the development of FSD as a medical diagnosis.1 However, the influence of such values on medical research can be difficult to isolate, which may be why Loe must look to popular media to suggest how attitudes about female sexuality develop into medical health concerns: the demand for a female Viagra is not coming from the pharmaceutical companies alone … [since] one regularly finds references to a ‘female Viagra’ in the main-stream media, on television talk shows, and even in [her] conversations with college students, many of whom have heard of FSD and think they might have it.2 What I would like to suggest is that even when FSD and the demand for its cure can be seen as developing through tangible medical research into female sexual health, and similarly as gaining momentum through the persuasive marketing of Viagra and its mythical female counterpart, these processes occur within a rhetorical economy of female pleasure where, even at the best

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______________________________________________________________ of times, women may be considered either silent partners in their own sexuality or shareholders in a traditionally male enterprise. The title of this paper, “Woman as Mysterious Machine: Metaphor, Rhetoric, and Female Sexual Dysfunction,” indicates that this humanitiesbased research into health and wellness relies on rhetoric, a discipline classically defined as the art and study of persuasion. Rhetorical theory, itself seemingly as tricky to define as female sexuality, has gone through a number of transformations since its classical inception under Greek democracy, and later systematization at the hands of Aristotle. As Patricia Bizzell and Bruce Herzberg note in The Rhetorical Tradition, while rhetoric began as a classical study of persuasive speech, [the] system of classical rhetoric was too powerful to be limited to the few forms of public speaking to which it was originally applied, and the questions about language and knowledge raised by classical rhetoricians were never to be put to rest. After the classical period, the bounds of rhetoric expanded, until today they encompass virtually all forms of discourse and symbolic com-munication.3 Indeed, rhetoric no longer concerns itself with only the necessary conditions of persuasive speech, but also extends to consider the far-reaching effects of language on the actions and decisions of discursive com-munities. Rhetoric, as defined by contemporary rhetorical theorist Kenneth Burke, is about how communication makes us a part of such communities, and how our identification with certain groups affects our actions. Rhetorical theory, although it does not provide strict protocol for the scrutiny of the language that structures matters of health and medicine, affords instead an avenue for understanding more generally the persuasive element of health-related exchanges. When pressed by Socrates in Plato’s dialogue, Gorgias, to account for the purpose of rhetoric, the Greek Sophist and early rhetorician Gorgias relates as evidence for Socrates the usefulness of rhetoric to the treatment of illness above and beyond the presence of medical expertise: On many occasions now I have gone in with my brother and with other doctors to one of the sick who was unwilling either to drink a drug or to submit himself to the doctor for surgery or cautery; the doctor being unable to persuade him, I persuaded him, by no other art than rhetoric.4

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______________________________________________________________ Much like its Sophistic counterpart, contemporary rhetorical theory urges for an understanding of rhetoric as the means by which individuals not only come to form attitudes about their health, but also by which they will assent to certain courses of action in relation to their wellness. Health and wellness, as highlighted by Gorgias in the example he provides to Soc-rates, must therefore be seen as concepts that evolve from persuasive exchanges, and rhetoric as a means by which rhetorical agents (physicians and patients, in most cases) mediate their understanding of the two. Before further considering the role of rhetoric in the mediation of FSD, and the relationship of metaphors of female sexuality to its discursive construction, it is worth defining the rhetorical model that forms the basis for research into female sexual health, Kenneth Burke’s framework of rhetoric as identification (an extension of the classical, Aristotelian model of rhetoric as persuasion). In A Rhetoric of Motives, Burke writes, rhetoric as such is not rooted in any past condition of human society. It is rooted in an essential function of language itself, a function that is wholly realistic, and is continually born anew; the use of language as a symbolic means of inducing cooperation in beings that by nature respond to symbols.5 Through Burke’s A Rhetoric of Motives, rhetorical analysis transforms from a taxonomy of good speech into a tool that can be used to measure the effects of language on social will. The ‘use of language as a symbolic means of inducing cooperation,’ further, implies that those who respond to rhetorical appeals do so largely because they have been persuaded to identify themselves with the values and motivations of a group of individuals. A similar process can be recognized in appeals to the need for proper diagnoses and consequent health-based remedies of women’s sexual health problems. According to Burkean rhetoric, groups interested in such diagnostic criteria will respond to different, yet consistently symbolic, representations of female sexuality and sexual health concerns. The terms used to discuss female sexuality will therefore greatly determine the scope of proposed solutions to female sexual difficulties, and the development of diagnostic criteria for a condition known as FSD further limits the resources available to attend to female sexual health. Metaphors, both of biomedicine and of female pleasure, also produce the value of female sexuality within North American pharmaceutical culture, and therefore provide the rhetorical foundation for female sexual dysfunction. This research into the rhetoric of FSD, a specialized subset of the study of the rhetoric of medicine, began as part of a graduate seminar in the University of British Columbia’s Department of English on “Medical

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______________________________________________________________ Discourse, Public Values, and Epideictic Rhetoric: The Case of Pharmaceutical Advertising.” Epideictic rhetoric, the ceremonial rhetoric of praise and blame, tends to be a more familiar genre of persuasion for audiences versed in a rhetorical address as entrenched as the eulogy. An under-standing of a rhetoric that celebrates virtue and disparages vice often proves relevant in an assessment of the effect of language on medical diagnosis because epideictic rhetoric most successfully deploys the values needed for attitudes, which in turn produce actions that may range from medical diagnosis to healthcare policy production. Judy Segal, in her introduction to the seminar on epideictic rhetoric, writes, “Values have always been implicated in epideictic rhetoric: we praise people for embodying qualities we admire and blame them for embodying qualities we deplore.” Much like the case with Burkean rhetoric – whereby rhetorical representations elicit from individuals a sense of their alignment with the will of a larger group – the epideictic rhetoric used in pharmaceutical advertising conditions pharmaceutical use through the positioning of values in relation to new drugs: values of good health, self worth, and productivity, to name a few. Healthcare discussions that pertain to women’s sexual health, I would argue, similarly condition the consequent diagnosis of FSD by appealing to good health, self worth, and productivity, but the diagnosis also stems from embedded, metaphorical conceptions of gender and pleasure that limit the range of solutions for addressing women’s sexual health within a biomedical model of healthcare. In Metaphors We Live By, a text devoted to the persuasive nature of symbolic language as earlier described by Kenneth Burke, George Lakoff and Mark Johnson draw attention to the rhetorical element of metaphor, and argue that “metaphor is pervasive in everyday life, not just in language but in thought and action.”6 Metaphor, to Lakoff and Johnson, persists through conceptual systems whose function links language to thought and actions, a rhetorical process by which individuals are induced to form attitudes and make decisions: “If we are right in suggesting that our conceptual system is largely metaphorical, then the way we think, what we experience, and what we do every day is very much a matter of metaphor.”7 Metaphor, by allowing us to experience the unfamiliar through the familiar, plays a valuable role in discussions of healthcare, where definitions of health and wellness would tend otherwise to remain contentious at best. Segal explores the influence of metaphor on medicine in “Public Discourse and Public Policy: Some Ways That Metaphor Con-strains Health (Care),” an article that appeared in the Journal of Medical Humanities in 1997. Here Segal argues that the dominant metaphor in western biomedicine is “the body is a biochemical machine…a collection of working – and non-working – parts”8 that can be repaired through medical intervention. Although in this article Segal provides a more general view of the effect of metaphor on healthcare mandate, her definition

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______________________________________________________________ of the body-as-machine metaphor proves applicable to the rhetoric of female sexual dysfunction because it illuminates a seemingly innocuous lack of distinction between male and female bodies within biomedicine. This reduction of male and female bodies to the sum of their parts, if Lakoff, Johnson and Segal are correct in their assessment of metaphor, holds sway over how biomedicine attends to those bodies when problems arise. A biomedical model of sexual health premised on the conception of bodies as machines limits the discussion of problems to physiological function, which persist in the everyday rhetoric of sexuality; to be ‘turned on’ is a sign of healthy sexuality, and impediments to sexuality are termed ‘turnoffs.’ Viagra, too, is an effect of the body-as-machine metaphor, or at least is often discussed in such terms. In “Viagra Cyborgs: Creating ‘Better Manhood Through Chemistry’” Annie Potts observes, “Viagra rhetoric consistently uses and produces the metaphors of machinery; the penis is treated as part of the male machine; erections are seen to operate according to the principles of simple hydraulics, and as Barbara Marshall puts it, Viagra is constructed as “a mechanical solution to a mechanical problem.”9 Potts recounts the experiences of men who have been reprogrammed “to behave as properly sexually functioning men,”10 notes that although some men experienced dismay at what they felt were unnatural erections, many others reported that “Viagra provided a ‘jump-start’ in cases of ‘mild’ or ‘occasional’ erectile difficulties.”11 Both physiologically and metaphorically, Viagra reinforces the preoccupation of western medicine with sexuality as a ‘sex drive,’ and further, with sexual problems as a matter of straightforward mechanical difficulties. Female sexual problems, however, have been difficult to ‘repair’ within biomedicine, which tends – most markedly in the case of ED – to be more compatible with the components of male biology. Not only has biomedical research failed to yield a female Viagra, but the medicalisation of female sexuality has triggered the response of a new group of women less concerned with whether Viagra will work for them and more interested in whether the values of biomedicine are compatible with their definitions of female pleasure. As a result, criticism of the diagnostic criteria for FSD often focuses on the suggestion that a biomedical model may be ill equipped to attend to the sexual health concerns of women. Jennifer Fishman, in “Manufacturing Desire: The Commodification of Female Sexual Dysfunction,” perhaps inadvertently stresses the constraint of masculine biomedicine on research into female sexuality by noting that FSD research has been entirely premised on Viagra, a solution for men’s sexual health problems: “In the wake of Viagra’s success as a treatment for erectile dysfunction,” Fishman writes, “attention turned to finding equally effective drugs to treat women’s sexual problems, labelling this ‘new’ condition female sexual dysfunction.”12 Critics such as the Working Group on

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______________________________________________________________ Women’s Sexual Problems lobby the same complaint in “Be-yond Dysfunction: A New View of Women’s Sexual Problems,” that “publicity about new treatments for men’s erection problems has focused attention on women’s sexuality and provoked a competitive commercial hunt for the ‘female Viagra.’” Within “A New View,” Leonore Tiefer et al. relate the constraints placed on emergent research to metaphor, and specify that the “particularly serious distortions produced by [a] bio-medical framework that reduces sexual problems to universalized disorders of physiological function,” is the blurring of distinctions between male and female sexuality, or the “false notion of sexual equivalency between men and women.”13 Although “A New View” extends the boundaries of criteria for women’s sexual problems, it also gestures at further metaphors of female sexuality that have affected diagnoses of female sexual concerns. Alongside the image of the male sex drive, which occasionally must be serviced or sometimes even ‘jump-started’ – all tropes of the dominant biomedical metaphor of the body as a machine – is the image of female sexuality as complicated, mysterious, and even inaccessible. Critics like Loe and Tiefer express frustration with the limited terms of the medical model through which man is conceived as the opposite of ‘the complicated woman.’ Femininity continues to be imagined as utterly mysterious and complex. Because no easy answers have yet been discovered, it is still too early to know how women’s sexuality might be ‘fixed’ in the months and years to come.14 The hidden premise of the rhetoric of female sexuality, and therefore of female sexual dysfunction, is that authentic woman and authentic pleasure are incompatible, or that if woman is a biochemical machine, her operating system does not directly support programs of pleasure. Such representations of female sexuality may explain why the pleasure economy of pharmaceutical advertising seems to have overextended itself when it envisioned the same success for female Viagra that it garnered for Viagra. Not because the rhetoric of commodification could not persuade of the desire for female Viagra – after all, JAMA statistics cited in The Rise of Viagra indicate that sexual dysfunction is more prevalent among women than men – but, I would argue, because the rhetoric of pleasure could not persuade of the desire for female desire without challenging predominant values of female sexuality embedded in the metaphor of ‘feminine mystique.’ Therefore, regardless of its outcome, the search for a female Viagra rhetorically produces the character of female sexuality, constructing, constraining, and quite literally confusing her access to pleasure. One of the ways that I have

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______________________________________________________________ tried to support this claim has been by suggesting how the search itself provides the terms through which one may speak of feminine sexuality, terms that can be seen as not only prohibitive in that they limit attitudes toward female pleasure, but that, through limiting attitudes, also limit access to pleasure. The rhetoric of female sexual dysfunction, besides entrenching the value of female sexuality, complicates the character of expertise in relation to women’s sexual health. Questions of female sexuality and female sexual dysfunction, within a metaphor of mysterious womanhood, lead into questions of qualification. Who can be considered qualified to guide women through their sexual problems? What are the guidelines for such qualification? Under a male medical model, those qualified to attend to female sexual problems will be those who have been trained to ‘fix’ the body – but the solution of a metaphor of the body-as-machine develops into another problematic metaphor, within which female sexual problems cannot be fixed because they are too complicated to be understood. Within rhetorical analysis, competing metaphors often signal a conflict of values. Critical responses to FSD and sexual health research in general, despite at times seeming pessimistic about the representations of female sexuality within western medicine, do rhetorical work to determine the values that will define future attitudes about female pleasure, and provide alternative models for female sexuality that will account for the shortcomings of metaphor and accommodate understandings of female sexual problems that cannot be ‘fixed’ by a medical model alone and that, in the spirit of Aristotle, will alter symbolic exchange within the pleasure economy for the better, and for the greater good.

Notes 1

M Loe, The Rise of Viagra, New York University Press, New York, 2004, p. 143. 2 Ibid., p. 163. 3 P Bizzell & B Herzberg, The Rhetorical Tradition: Readings from Classical Times to the Present, Bedford/St. Martin’s, Boston, 2001, p. 2. 4 JH Nichols, Plato Gorgias and Phaedrus, Cornell University Press, Ithaca, 1998, p. 38. 5 K Burke, A Rhetoric of Motives, University of California Press, Berkeley, 1969, p. 43. 6 G Lakoff & M Johnson, Metaphors We Live By, University of Chicago Press, Chicago, 1980, p. 3. 7 Ibid., p. 3.

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J Segal, ‘Public Discourse and Public Policy: Some Ways That Metaphor Constrains Health(Care)’. Journal of Medical Humanities, vol. 18(4), December 1997, p. 221. 9 A Potts, ‘Viagra Cyborgs: Creating Better Manhood through Chemistry’. Vital Politics, 2003, p. 2. 10 Ibid., p. 2. 11 Ibid., p. 6. 12 J Fishman, ‘Manufacturing Desire: The Commodification of Female Sexual Dysfunction’. Social Studies of Science, vol. 34, 2004, p. 188. 13 L Tiefer, M Hall & C Tavris, ‘Beyond Dysfunction: A New View of Women’s Sexual Problems’. Journal of Sex and Marital Therapy, vol. 28, 2002, p. 225-6. 14 Loe, op. cit., p. 163-64.

Bibliography Bizzell, P. & B. Herzberg. The Rhetorical Tradition: Readings from Classical Times to the Present. Bedford/St. Martin’s, Boston, 2001. Burke, K. A Rhetoric of Motives. University of California Press, Berkeley, 1969. Fishman, J. ‘Manufacturing Desire: The Commodification of Female Sexual Dysfunction’. Social Studies of Science, vol. 34, 2004, pp. 187-218. Lakoff, G. & M. Johnson. Metaphors We Live By. University of Chicago Press, Chicago, 1980. Loe, M. The Rise of Viagra. New York University Press, New York, 2004. Nichols, J.H. Plato Gorgias and Phaedrus. Cornell University Press, Ithaca, 1998. Potts, A. ‘Viagra Cyborgs: Creating Better Manhood through Chemistry’. Vital Politics, 2003, pp. 1-20. Segal, J. ‘Public Discourse and Public Policy: Some Ways That Metaphor Constrains Health(Care)’. Journal of Medical Humanities, vol. 18(4), December 1997, pp. 217-231.

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______________________________________________________________ Tiefer, L, M. Hall & Carol Tavris. ‘Beyond Dysfunction: A New View of Women’s Sexual Problems’. Journal of Sex and Marital Therapy, vol. 28, 2002, pp. 225-232.

Note on Contributor Monica Brown recently completed her M.A. in English at University of British Columbia, with a focus on rhetoric and critical theory.

Part 3 The Multiple Subjectivities of Addiction

It’s the Stories You Tell: Binge Drinking, Violence and Celebrity Andy Ruddock Abstract Drawing on critical media theory, this chapter argues that alcohol aware-ness interventions should be informed by knowledge of how audiences frame and narrate risk. Scholars have pointed to the highly ambiguous messages that media circulate around alcohol. Survey and focus group data gathered as part of a drink-awareness campaign in Liverpool, Eng-land, suggests that this ambiguity is reflected in a general audience framing of alcohol within the themes of violence and celebrity. While young drinkers in this study acknowledged the dangers of excess, prioritising the threat of assault also allowed them to either abscond from national concerns over binge drinking, or understand their role in the problem as a natural, transitional phase. The highly publicized death of ex-footballer George Best from alcohol-related causes, voluntarily referenced in the focus groups, should have pierced the belief that drinking is something that young people naturally grow out of. That it did not exemplifies some of the problems in using popular culture as a vehicle for messages about wellbeing. The conclusion from this, however, is that more research is needed on how ideas about healthy drinking are developed through audience centred narratives that use media resources. Keywords: Alcohol, media, violence, narrative, binge drinking. 1.

Introduction It is a little unsettling to find that, despite daily media missives imploring us to take greater care of the self, a recent review edition of The Journal of Health Communication concludes that public information campaigns miss most of the people most of the time. The reasons remain not only mysterious, but under researched.1 Since communication is recognised as a vital ingredient in effective healthcare, so greater efforts must be devoted to applying more methods and theories to an increased diversity of maladies.2 Accordingly, this chapter offers a contribution from qualitative audience research, drawing on critical media studies. The topic is binge drinking in the United Kingdom. With British city centres drowning in blood and vomit, and as copies of The Reader’s Digest lay ignored in liver clinic waiting rooms filled with new patients in their thirties and forties, so it seems the collapse of the National Health Service is driven by a thirst that cannot be quenched by unit awareness warnings. Addiction is clearly a factor here. However, from a communication viewpoint, this chapter will argue that it is

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______________________________________________________________ worth paying attention to how drinkers narrate their habit through, not in spite of, public health campaigns. This might explain why messages can miss their target, as well as offering reflections on how communication can be improved by understanding modes of engagement with popular culture. A narrative focus helps usurp the unhelpful dichotomy between mass and interpersonal communication often drawn in scholarship on wellness discourses. In this area, health studies share common ground with mass communication and critical media scholarship. Despite theoretical and methodological differences, the latter paradigms have historically shared the assumption that the worlds of media and everyday speech are at odds. In this study, survey and focus group data collected from drinkers in Liverpool, England, did not support this antagonistic conceptualisation; the mass/interpersonal distinction could not account for people who were aware of alcohol’s dangers, were not in principle hostile to the notion of bombastic public health campaigning, and indeed used risk perceptions to structure their alcohol consumption. However, the data also suggested that warnings on the dangers of alcoholic excess were paradoxically used to create illusions of control around unsafe consumption levels. Despite the general recognition that Liverpool, like the rest of the UK, has a drinking problem, the majority of subjects involved in the research continued to over-imbibe. Yet this contradiction cannot be understood as a plain rejection of health warnings. Rather, drinkers combined media information and personal experience to create their own risk maps and chronologies, where heavy drinking could be redefined as manageable, if not entirely safe. Instead of identifying the discrete influences of alternative communicative forms, it is more accurate to say that drinkers embedded media warnings into subjective experience. The embedding process was attractive as it allowed them to find comfort in drinking habits that were also the source of some anxiety.   The data here were collected from two devices; an online survey, designed to evaluate a pre-Christmas alcohol awareness broadcast on a lo-cal radio station, and a follow up focus group, targeting male drinkers aged 1835. Contrary to convention, the survey was used as an opportunistic tool to explore how people in Liverpool framed “problem drinking.” The focus group data offered insight on how young drinkers negotiated the multiple and often contradictory messages they received about alcohol consumption, creating narratives that enabled them to feel healthy. In the survey, violence emerged as an important factor. What worried the largely female sample the most was that they would fall victim to some form of assault. Asked what style of media campaigning was most effective in giving pause for thought, many of the respondents identified violence themes. However, it appeared that this way of framing risk also presented binge drinking as someone else’s problem. The significance of this finding is that in critical media studies, a research paradigm known as cultivation analysis, developed by the late

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______________________________________________________________ George Gerbner, has argued for decades that media violence should be understood as a narrative device that audiences use to judge how dangerous the real world is.3 Celebrity has also been used as a way of thinking through the symbiosis between mass and interpersonal communication; figures whom we only meet on screen, in the press and via the internet have very real affective presences in our lives. It is therefore significant that the focus groups identified the highly publicized death, in the winter of 2005, of footballer George Best in making sense of drinking. The graphic depiction of Best’s agonising, alcohol-induced demise appeared curiously reassuring for people who, in many respects, would understand their drinking in much the same way as a step one alcoholic would define his or her situation; as powerless in the face of drink. 2.

Health Communication and Critical Media Studies The first task is to establish what critical media studies offer to health communication. Seth Noar’s review of empirical work done in the latter field over the last decade provides a suitable starting point.4 Noar’s panoramic view is bleak; metanalyses offer that at best, a public health campaign can expect to influence less than 8% of its target audience. Yet such global summaries make little sense amidst the diversity of conditions and persuasive goals pursued through health communication. What the literature also demonstrates, in Noar’s view, is that well designed campaigns developed through the sensitive combination of theoretical insight and empirical understanding of the target population can work. How they can work would be better understood if more effort were to be put into evaluating campaigns on criteria other than exposure. The net conclusion is that successful awareness campaigns depend on many variables, including the ability to speak to the target audience in a language they recognize about things that matter to them. Appreciating where the audience “are” is interpreted by some as proof that interpersonal communication is a superior learning resource. Indeed the belief that the public will only take responsibility for their well being if they are interpolated as partners in the creation of health debates, instead of targets of elite persuasion, would appear to announce the sovereignty of interactions that we would normally understand to be “unmediated.” For example, one of the places where communication research has had the greatest impact has been within a medical profession that now conceives the patient/care provider relationship as being about dialogue, not information transmission.5 In this context, it is easy to see why the primacy of face to face interaction is presented as fact in some sources:

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______________________________________________________________ Whereas mass media may alert the public about health risks and help them form societal level judgments, re-search has shown that people more often rely on inter-personal channels of communication, such as social networks, to assess their personal health risks.6 However, with so many questions about how the public make sense of illness still to be answered, this conclusion can only be pre-mature. If people tend to place greater trust in people they know over the media, this does not alter the evidence that popular culture exerts a powerful influence over how we understand medical conditions. Much of this is negative. Fictional representations of health issues can do all sorts of damage, facilitating fear, ignorance and bad practice through sensationalism, stereotyping, and misrepresentation.7 Even with the best of intentions, since popular culture is not designed as a vehicle for information, the “learning” it offers can be incomplete, inaccurate or indeed counter-productive (as witnessed by the glamorization of smoking and drinking in teen cinema).8 Moreover popular images are also subject to and sources of ideological influences; for example discouraging patients from becoming “participants” in health dialogues by legitimating the hegemonies of technology and professional healthcare.9 None of this, however, precludes the possibility that popular culture remains a potentially useful source of engagement. And at the very least, more work is needed on how apparently well designed and intentioned efforts to im-prove public consciousness can have unpredictably adverse effects. This indicates a place for critical interpretive analyses addressing the relative under-representation of qualitative methods in the evaluation of health campaigns.10 In short, “state of the art” reviews argue that there is much to be understood about how audiences interpret and use health messages. This opens a space for research that looks at how both campaigns and popular culture shape public health discourses. It is therefore both serendipitous and significant that participants in this study identified George Best’s death as a media moment that provoked reflection on drinking. One of football’s first celebrities, the Irish tragic hero accesses an area of media theory that interrogates flaws in rigid distinctions between interpersonal and mass communication. The realities of convergence, and the saturation of everyday life with media, makes this a tenuous schism, an argument that is perhaps clearest in under-standings of “celebrity.” In the 1950s, communication scholars developed the idea of “parasociality” to address the curious phenomenon whereby audiences developed affective bonds with media figures that in many ways psychologically resembled the sorts of relationships they held with ‘real’ people.11 What this failed to do is respect the materiality of media relations. Encounters with the famous, whether in the flesh or otherwise, draw on the

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______________________________________________________________ everyday practices analysed by Erving Goffman.12 And for all kinds of reasons, audiences can have emotionally real relations with celebrities; it is in these ties that we can discover how certain issues "come alive" for many. As an example, US basketball player Magic Johnson’s announcement of his sero-posivtive status powerfully dispelled the myth that HIV was an issue that only affected gay men in the early nineties, especially for those with no direct experience of the condition.13 What this tells us is that rather than looking at divisions between interpersonal and mass communication, we should instead ask how in the act of everyday living, audiences fold the latter into the former. So it is entirely sensible to ask how Best’s death influenced perceptions of drinking patterns that are only too real in their physical and social consequences. 3.

A Survey of Radio Listeners The first part of this project centred on a radio/internet alcohol awareness campaign broadcast by Liverpool’s Juice FM on behalf of Citysafe, a partnership of Liverpool City Council, Liverpool Primary Care Trust and Merseyside Police. The campaign consisted of vox-pop spots addressing the social embarrassment drinkers can suffer (e.g. “I can’t even remember getting into the taxi as I was so hammered!”). The messages were broadcast 140 times over the two-week pre-Christmas period. Additionally, Juice created an internet micro-site detailing information about alcohol (such as the safe daily and weekly alcohol intake limits for women and men). Listeners were encouraged to enter a quiz on safe drinking, with Robbie Williams concert tickets offered as an incentive. Answers to the quiz could be found on the micro-site. While there, listeners were asked to complete an alcohol consumption/attitude survey. This research is based on the 179 responses received. As the low response rate indicated, the survey method was flawed in many ways. Citysafe had decided to do the questionnaire before I became involved in the project. I was, however, asked to contribute individual questions, and in doing so, was able to introduce media variables in a way that would allow the development of research questions to be explored through other techniques. What could such a small, non-random sample say? There are several reasons why we cannot speak of “effects” with any real confidence. While media messages can produce short-term changes in attitudes and behaviours under contrived experimental conditions, there is little evidence to show how or if these dynamics transfer to the real world.14 Researchers have indicated that messages about alcohol can be measured according to a number of indicators of success; the power to provoke behavioural change, the ability to induce pleasure, the perception of quality, as well as awareness and recall.15

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______________________________________________________________ The survey could only be conceived as an exploratory tool. Close and open-ended questions were used so respondents could set the research agenda. Citysafe knew there was much they did not understand about how and why people drank in Liverpool. So, the survey was consciously positioned as no more than an opening gambit in the creation of a public dialogue on alcohol, framed within “partnership” models of health communication. What alcohol related social problems did the drinkers care about? What role did drinking play in their lives? What sorts of media messages could they relate to? Based on the answers to these questions, the surveys did allow us to comment on the sorts of themes that connect with key publics. Most respondents were women. Approximately 69% of the sample was aged 18-35. In terms of drinking habits, the “modal drinker” visited bars once or twice a week. She did not set out to get drunk, sometimes mentioning spending time with friends or dancing as the real goals. However, she still managed to spend £20-£50 per night on alcohol alone. She mixed her drinks, and if she stuck to anything, it was spirits. Asked to rate a series of alcohol related problems on a scale of 1-8, where 1 indicated the highest level of concern, violence appeared as the leading theme among all respondents, with an average score of 3.6. A Friedman test revealed that drinkers feared violence significantly more than social humiliation (p=<.001). Respondents also tended to prioritize shortterm consequences over long-term physical and mental effects. When asked ‘Have you ever seen, heard or read anything in the media that has put you off drinking?’ the most common answer was violence, at 36%. When asked what they would put in a drink awareness campaign, the most common response involved showing gruesome evidence of the effects of violence (35%). This held true for both genders. This unease was perfectly sensible. McVeigh et al.’s research indicates that alcohol has played a major role in escalating incidents of assault across Europe.16 However, a media studies perspective alerts us to a subtext. During the 1960s, the late George Gerbner had argued that television violence was principally significant as a narrative of power.17 On the basis of extensive content analysis of US prime time, Gerbner depicted a medium that used aggression to underwrite white, middle class, middle aged male hegemony by consistently portraying women, non-whites and the elderly as disproportionately vulnerable. Violence, for Gerbner, was not about violence; it was about knowing one’s place. Here, I am using Gerbner’s ideas to make the simple point that media violence, in terms of why it appears and what it “does” to audiences, has multiple motives and consequences. As we shall see, worrying about assault actually appeared to offer the survey respondents some sort of comfort. However, one cannot attribute this to the sort of institutional design

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______________________________________________________________ that Gerbner saw running through television, where aggression was the more or less planned child of a corporate world heavily invested in maintaining the existing division of labour. And indeed, the survey data in many ways contradicted a central part of Gerbner’s thesis. His “scary world” hypothesis argued that high levels of mediated aggression make people wary of the outside world.18 In this sense, campaigns that focus on violence might have a “boomerang” effect. Here, people made aware of levels of assault in the night economy would be repelled from the city centre, effectively exacerbating the problem of lawlessness by abandoning weekends to those who do not care about the risk of harm. But our data did not support this hypothesis. Most of our drinkers continued to spend large amounts of money on alcohol in public despite their own perception that this placed them in danger. However, the idea that beliefs about violence have non-obvious, non behavioural ideological consequences did bear fruit. To begin, it be-came clear that drinking was the fulcrum of the respondent’s sociality. As has been mentioned, most people continued to consume far more than the recommended limits in city centre bars despite the self defined dangers posed. Drinking had become the inescapable soundtrack to the respondents lives, so much so that many drank even when they were not drinking; when we asked respondents what they would do on an alcohol-free evening, almost everyone mentioned activities and settings where alcohol could easily be present; meals, bowling etc. That is, the only sort of alcohol consumption that appeared to count came in the form of the public binge. In this, the survey echoed Porter’s ethnographic research into the variety of drinking cultures that colour British life.19 To begin, Porter acknowledged difficulties in explaining drinking behaviour by outlining literally dozens of variables that influence alcohol use. Nevertheless, common patterns emerged that dovetail with the survey findings; like our drinkers, most of Porter’s sample claimed they did not set out to get drunk. They did not care about the issue of social embarrassment. Far from it; bad behaviour was part of the pleasure of drinking, in that it fuelled ‘post session’ gossip. His drinkers did, however, react to shocking messages about alcohol’s effects. Overall, while they recognised that Britain is gripped by an alcohol problem, they did not see their own culpability in the matter. Porter’s research essentially allowed drinkers to describe their alcohol biographies in their own terms. From the fog of this data, a picture materialised where drinking formed the background for almost every social setting and life stage that people could imagine. Here, bingeing was understood as a natural part of twenty-something singledom; it was not a health risk as people inevitably grew out of the practice. But although most of the older people interviewed did drink less than they had in their twenties, many continued to imbibe excessively in absolute terms. Continued

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______________________________________________________________ hedonism was masked by shifting locales; dinner parties with friends were not understood as bingeing occasions, regardless of consumption. What Porter described, then, are the rhetorical strategies that people use to normalise their own drinking habits, and disguise the way that the excesses of early life establish habits where sociality cannot be imagined in the absence of booze. Consciously or not, the survey produced data consistent with the argument that worrying about alcohol induced violence compliments the project of naturalising drinking’s foundational leisure position. While our respondents occasionally referenced knowing someone who had been attacked, none mentioned either being the victim or perpetrator of any form of assault. Violence, then, was framed as something done by others, largely to others. The violence focus thus made alcohol someone else’s problem. If assault was the major hazard drinking brings, the risks appeared largely worthwhile. Consequently, while violence related campaigns might have an impact, they might also provide drinkers with tools to dissociate from the drinks dilemma. So despite a methodology that could make no claim to generalisability, the Citysafe survey found a trend common in risk research, where audiences are prone to using media warnings to acknowledge the presence of danger at a societal level, while refusing to see this as relevant to their personal vulnerability.20 There is also much evidence to suggest that drinkers are helped in this normalising process by mixed media signals. In reality, awareness campaigns have to jostle for attention with other narratives about alcohol and its social use. Pitt et al.’s content analysis of prime time British television discovered the alarming prevalence of drink and drinking settings, especially in genres such as soap operas.21 Alcohol can crop up in the most surprising of places. Ryan and Hoerrner’s study of twenty-four Disney films made for children between 1937 and 2000, found an amazing 381 images of substance use/abuse. Where alcohol was the drug in question, representations were not connected with any explicit health warnings.22 The realities of a media saturated world mean that while we might be able to ignore awareness campaigns, other sorts of messages are harder to switch off. Several studies contend that while the alcohol industry pleads innocence in targeting youth in its advertising content, its placement means that children and adolescents are in effect bombarded with positive images that shape socialisation into drinking cultures.23 Worryingly, US researchers have noted that it is possible to make subtle and positive connections between drinking and dangerous activities such as driving and swimming, without violating the letter of media regulation prohibiting such associations.24 What makes these images really powerful is the fact that we do not notice them, simply because they are so familiar.

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______________________________________________________________ This is not to say that audiences are helpless to resist. But it is to say that we need to understand their cultural environment to fully appreciate how local initiatives can work. While researchers have and continue to explore the role that interpersonal communication plays in mediating thoughts, behaviours and media influence, everyday interactions increasingly Within the field of health draw on a range of media content.25 communication, researchers have explored how audiences use this material to build personal narratives around issues such as HIV and smoking.26 In a similar vein, Jenny Kitzinger’s research discovered the central role that the UK soap Brookside had played in helping sexual abuse survivors articulate their experiences.27 Although a fictional representation, the soap’s storyline featuring a father’s abuse of his wife and daughter helped real survivors to frame their abuse as part of a social epidemic, rather than as a unique or even normal occurrence. Learning is about more than the transmission of facts. Clearly, alcohol education has to connect with everyday forms of discourse, and the needs of the audience. But it must also engage with how people draw on local, national and international messages about drinking. The survey had suggested that while people accept that they often and regularly drank too much, the centrality of booze in their lives gave motivation to frame bingeing as a transitional and even natural state; a growing pain. Violence was a tool to do this. A literature review of work on media and alcohol further offered that mixed messages might comfort as much as they confront. Once again, despite the methodological issues that meant the survey could do more than indicate patterns of potential significance, its results were consistent with more rigorous studies that conclude persuasive success is influenced by the type of behavioural change desired; it is easier to encourage people to adopt new habits than to change or abandon old ones that are the source of much pleasure.28 This would ex-plain the gap between accepting and acting on hazardous drinking practices. 4.

The Focus Groups On the basis of the survey’s recommendation for qualitative research into how young Liverpudlians made sense of drinking, Citysafe commissioned David Murray Associates to convene a series of ten focus groups, comprised of men aged 18-35. The 84 strong sample was in-tended to compensate for the under-representation of men in the survey. The study gloomily concluded that the subjects’ drinking stories underlined the depth of their alcohol dependency. On the whole, they felt impotent in the face of alcohol’s parasitic colonization of their social milieu. Drinking seemed so ingrained in the men’s interpersonal interactions that it was feared they could do nothing save salivate at the prospect of longer opening hours: “market conditions are being imposed on a young drinking

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______________________________________________________________ public who have very little respect for alcohol, place little or no value on it and are not educated or conditioned to restrain from over-consumption.”29 However, combining the raw focus group data with cultural theory on space and time, I want to argue something a little different: The problem was not that the men drank without restraint, but that they functioned within limits of place and time, not quantity. This allowed the men to frame the dangers of alcohol as being social and haphazard, rather than medical and predictable. To begin, it would not be true to say that the men interviewed were unaware or unconcerned about their drinking. Nor was it the case that the men always saw these dangers as someone else’s problem. On the violence issue, some mentioned their own role as instigators, or indicated that they understood why drinkers became angry and violent. Don’t give me whiskey-it’ll make me aggressive. Vodka makes me act differently… so does whiskey and they should ban Stella [a lager with a high alcohol con-tent, locally known as “wife beater”]. You wake up in the morning with a black eye and you can’t remember how you got it. …once you’ve had a few, you think they’re muppets then you realise, all of a sudden, they’re hard, pie-eating Rugby League players (young Liverpool male speaking of drinking in St.Helens, a town marked by a distinctly different accent and love of rugby League). However, as in the survey, these moments of insight were laced into patterns of heavy drinking which the men generally saw as inevitable. How did they live this ambiguity? It is tempting to offer simple denial as the main device. As one man said: It [an alcohol awareness campaign] wouldn’t stop me from drinking…I would reflect on it for an hour, then continue as normal. Yet it is too simplistic to conclude that the men ignored evidence of the damage caused by excessive drinking. Significantly, no-one in either the survey or the focus groups defined concerns over alcohol as a product of media hype. Nor were either sample hostile in principle to the idea of being preached to; indeed, when asked what they thought the media should do to

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______________________________________________________________ sharpen public alcohol awareness, both samples suggested graphic campaigns that would stretch the bounds of taste in a confrontational manner. You’ve got to use positive words…’it will kill you’ will influence people more than ‘it can kill you’. If we consider historical models that have tried to explain the difficulties in using media to prompt attitudinal and behavioural change, such as the ideas of selective exposure and perception or Stuart Hall’s encoding/decoding model, we can see the common view that campaigns fail to communicate when there is a basic conflict between the worlds of media and those of social experience.30 Here, media are understood as extrinsic forces, fundamentally alien to lived culture. Recently, however, there have been three developments in audience research that have gone some way to overcoming the assumption that mass and interpersonal communication are discrete entities. Regarding the idea that media and audience are inherently opposed, Annette Hill’s research into viewers’ complaints about UK television concluded that the medium in fact does a good job of pleasing most of the people most of the time.31 The relatively few objections made by viewers, and the fact that complaining tends to be a one time only experience, suggests that media and audience are generally on the same cultural wavelength. In complimentary fashion, the focus group data showed people who were not affronted by alcohol awareness campaigns. Gerbner’s work hinted at the idea that people use media resources to build sense-making narratives about the world they inhabit. In the field of public health, this has been demonstrated in Desantis’ ethnography of patrons at a cigar shop in a US city. Anti-smoking stories were not ignored; on the contrary, they were a central part of the smokers’ conversations. However, these warnings were often discussed in combination with other news items about freak accidents, such as a story on a man killed by a stone propelled into his face by the blades of his lawnmower. The lesson was that life is inherently dangerous, and all one can do is manage the risk. Smoking only in the shop, only at the end of the day, the smokers understood their habit as part of a healthy balance among work, exercise and play.32 Moving to the Liverpool men, it is clearly wrong to say that media images and campaigns around binge drinking were effortlessly deflected. As one candidly stated: I am worried that I am possibly damaging my long term health … I saw a TV programme about units of alcohol consumption and decided to count mine. I was drinking 3 times the recommended level, and I was doing this 3 weeks out of 4.

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______________________________________________________________ Nor does the idea of negotiated readings really do justice to the men’s general acceptance of a wide range of physical and social costs drinking can exact. The question instead is how the men used elements of media discourse and other cultural resources to narrate their position in, and see a way out of, an inescapable crisis at this time of their lives? What is at stake is less a question of how the men conceded or rejected warnings about drinking, but about how they embedded elements of these messages into risky parts of their lives in a way that created the illusion of safety and salvation. Or in other words, how were alarming media messages used to comfort? Greg Noble 24 provides an interesting account of how mundane objects can be used to create a comforting sense of being at home which simultaneously confirms one’s place in the social order. His research involved interviewing Australian families on how the idea of nation impinged on domestic space making. In one case, a woman explained the pride of place given to a small metal cup, fabricated from an old medicine tin. The cup had been a childhood present made by her father for his dying sister. To the woman, it was a sacred item reminding her both of her father’s character, but also his position within the historical legend of Aussie ingenuity. Hence the display value of what for all intents and purposes looked like a piece of junk. What we see then, is that “home” is a blend of the material and the imaginary, where time and space are arranged in a way that creates a comfortable place in the world. The question, then, is how does alcohol figure in the mental production of ‘home’ for young people in Merseyside? Comfort would not seem to be a suitable word for the way that the men feel about drinking in Liverpool. The city centre itself was view-ed with some trepidation, even by those who felt assured of their ability to handle trouble: I don’t go into town much nowadays…creates a certain angst. Everywhere you turn…girls and lads battering each other…you just have to walk away from it. …it’s disgusting … it’s our town centre … an 18 year old soldier got killed, what’s that all about? Going into Liverpool doesn’t worry us, just makes us more aware … but you’ve got to go … there’s nothing round here.

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______________________________________________________________ As Murray concluded in the report itself, alcohol fuelled violence was often seen as being located in specific places, but was also driven by underlying regional rivalries: There’s a lot of difference between people from the north (of Liverpool) and people from the south … they can tell … they say things differently … there are bars … Wonder Bar on Slater Street, where people from the south end drink … you know straight away they’re from the south … that sort of thing can start fights. If you go to St. Helens you’ll get trouble, ‘cause we’re scousers [people from Liverpool] and they’re woolly backs [derogatory term used by ‘scousers’ to refer to inhabitants of Merseyside’s smaller, outlying towns]. However, for every dangerous place there were also pockets of safety. Asked what they would do on non drinking nights, one group replied, “get the cans in.” Although this was probably done with tongue in cheek, the fact remained that problem drinking tended to be associated with the city centre or “foreign” places. Drinking in the home, or when drinking was a secondary activity – during meals, when bowling, or while on trips to the cinema – did not blip on the mental radar. Similar conclusions can be drawn from the way that the men made sense of drinking time. When asked to design their own awareness campaigns, 8 of the 10 groups fatalistically decided to target teenagers and children, suggesting that they themselves were too far into the binge vortex to be saved. However, in other ways the men used time to define themselves as sensible drinkers. Although intoxication was the norm, the men did heed temporal boundaries. There were two sorts of drinkers; the “weekend warrior”; Don’t drink during the week … work Saturday morning, go to the pub before the match have a couple of pints, go to the pub after the match, have a couple of pints, then go into town … on Sunday a couple of pints locally. The other drinkers were the “steady accelerators”; Monday or Tuesday no drink, Wednesday 1/2 a bottle of wine, Thursday I played football and had a pint after that, then went home and had the other ½ bottle I started on Wednesday. Friday night in town after work had 4 or 5

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______________________________________________________________ pint. Saturday a few pints after the match, then a few pints watching football on Sky sports. On Sunday I went to a concert and had a few drinks watching the concert. Both appeared based on the idea that there is a right time for drink. Although the men felt somewhat disempowered by the absence of alter-natives to drinking as a social outlet; Most activities involve alcohol … you can’t really avoid [it]. Even if someone comes to visit you, you’d often have a bottle of wine. I have to travel 1 ½ hours to get out to north Wales to hike, cause there’s nothing to do around here. At the same time many believed that as individuals they had the power to stop drinking: I can take it or leave it…it doesn’t bother me. I don’t touch a drop all week. Still possessing the capacity for sobriety, the men felt that heavy drinking was something they would naturally grow out of, especially with the onset of fatherhood. As a whole, 27 was the age when the men felt that binge drinking began to wane.25 I’ve got a girlfriend and a baby … we go out and do family things. So, if there was an opposition between public health campaigns and the way that the men defined safe drinking, it fell in terms of quantity versus time. The men were most critical of campaigns that stressed unit awareness. The men knew their limits; but these limits applied to where and when, not how much. In this sense, for those times when the men did see themselves as part of the problem, they could explain this as a natural part of the maturing process, something they would pass though. There-fore, in their cultural vocabulary, while the men accepted that alcohol wreaks devastating physical and social costs, their chances of having to pay the toll were reduced as long as they played to their understanding of cultural geography, drinking in safe places at the right time.

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______________________________________________________________ The problem with this reading is that, according to Porter’s research, as British drinkers age, so they develop different alibis for continued excess; dinner parties in the thirties and forties, drinks whenever you please as the reward one has earned in the fifties and retirement. Drinking, then, is not youthful folly. The British public had been reminded of this in 2005 with the death of footballer George Best. Best is widely acknowledged as the world’s first footballing superstar, the man who blended playing ability with physical beauty and showbiz charisma. His fame endured past his premature retirement at 27, due to a playboy life-style founded on calamitous all-dayeveryday drinking. Despite receiving a liver transplant, Best continued to abuse alcohol, causing his untimely death at the age of 59. Days before his demise, Best insisted that the tabloid press publish photographs of him lying jaundiced, bleeding and tube infested on his deathbed to be. Here, surely, was a repost to the focus group’s charge that drink awareness campaigns were too soft: You see anti-smoking campaigns with a mother with 3 kids saying “I’m dying of cancer” but you never see an alcoholic sitting in a chair saying “I drank, I’m dying, I’ve got liver failure”. It just says “drink sensibly”. At face value, one might have expected the Best story to confront the men with the idea that youthful drinking patterns do not naturally diminish, all the more so given the significance of “27” in Best’s own life: George Best is the best role model ever telling you not to drink … footballer, 27, retired. Best’s “good times” turned to alcoholism precisely in the transition to thirty-something fatherhood on which the men pinned their hopes for salvation. However, this was not received as a warning in groups who blamed Best for his own downfall; He was told many times to stop, but he didn’t…not a role model for kids. Perhaps more tellingly, another stated He had a good innings [a metaphor for a long life, derived from the English sport of cricket] for what he drank. Using this comment, I would argue that the men’s reactions to Best’s demise cannot be seen as a simple rejection of the intended media message. Rather,

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______________________________________________________________ the coverage of Best’s life and death was riddled with ambiguities. The above quote does not regard Best as a tragic figure. Indeed, as many of the men in the groups mentioned being football fans, they would know that despite retiring from the top flight at an early age, Best had nothing left to achieve professionally, having won every honour in the game available to him. Horrific as it was, coverage of Best’s decline and fall was marked with admiration, envy and celebration. While the star’s surgeon, Sir Roger Williams, made frequent television appearances cataloguing the disastrous physical collapse endured by one of the twentieth century’s great athletes, at the same time the frequent use of Best’s quote “I’ve spent a lot of money on women, gambling and booze; the rest I squandered” suggested a full life, lessening the tragedy of what had happened.35 Having grasped the fantasy of being a professional footballer, Best, in this view, achieved a second nirvana; the player who became a playa. His fate, in this sense, had little to do with men, who at the age of 27 would settle into a life of marriage and babies where, unlike Best, they would have neither the time nor the cash for similar excess. As one of the focus group respondents said If I’d had his money, I’d have done the same. Comments such as these allow tentative observations on how both the theorization and empirical exploration of affective audience/media relations, currently exemplified by work on celebrity, allows useful reflections on the mechanics of public health discourses. One of the themes of this chapter has been the things lost in asserting that face to face communication is somehow more real than its media shadow. Combining verisimilitude and fiction, ordinary and extraordinary, celebrities like George Best let us inhabit the spaces between. By any objective standard, Best was both great footballer and drinker. Yet this reality could only be grasped insofar as it was performed and represented; the mercurial Irishman stayed famous long after hanging up his boots by becoming a fixture on the UK talk show and tabloid circuit, frequently and infamously appearing drunk to talk about his drinking career. His was a long running symbolic presence, such as is used by Nick Couldry to explain the reality effect of fictional television. Couldry asked why fans of Coronation Street, the UK’s longest running television soap opera, felt the need to visit its set at Manchester’s Grenada Studios.36 These ‘pilgrims’ were not burdened with the delusion that the show and its characters actually existed outside lights camera and action; instead, they celebrated a symbolic presence whose narrative had evolved in their own real time: “The Street,” as it is affectionately known, had always been there for them in their own living rooms as a familiar part of the day. That is, events onscreen were celebrated not only for themselves, but also as mnemonic devices that recalled special moments in viewer’s own lives.

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______________________________________________________________ One can hypothesise that Best’s death – which after all represented exactly the sort of graphic depiction of alcohol’s dangers that both the survey and focus group samples claimed would give them pause for thought – failed to have the impact that the star himself craved, since it was a tragedy nonetheless inextricable from an otherwise joyous forty year celebration of a roguish talent and temperament. For decades, drinking was accepted as part of professional football in the UK. If recent times have seen a conscious reversal of this trend, the image of the hard playing, hard drinking player remains an object of desire. A Carlsberg television commercial, aired extensively throughout the 2006 World Cup, featured “probably the best pub team in the world” made up of retired England internationals, including the World Cup winning Charlton brothers. The end sequence features the team in a bar. Peter Reid and Bryan Robson are centre shot. As players, both were renowned for their physical tenacity. Both had attributed some of their power to diets featuring Guinness as a staple. As much as players and fans alike appreciate the new footballing athleticism, driven by abstemious living, the Carlsberg ad gives voice to a yearning for a time when men such as Best could become the ultimate un-restrained masculine role model, doing as they pleased, especially with their bodies. Ultimately, Best’s legend was bigger than his liver failure. While his demise placed the issue of long term drinking damage on the public agenda, for the men in the focus groups the message was muted by its insertion into a long running narrative that whose general frame was affectionate nostalgia for a life well lived. 5.

Conclusion Taken in combination, the survey and the focus groups show that young Liverpool drinkers are neither unaware of the dangers of drinking nor hostile to the idea of more media campaigning on the topic. Coverage of the violent consequences of binge drinking dovetailed with personal experience to create the perceptions that drinkers were putting themselves at risk. However, the focus on violence also allowed drinkers a way to re-move themselves from the problem. In the largely female survey, violence was seen as something mostly done by and to other people. Although the men in the focus groups often confessed to taking part in or at least understanding violence catalysed by drink, this was simply part and parcel of the rite of passage that binge drinking has become. As a result, these men tended to focus on short term rather than long term consequences of alcohol, spending little time thinking about how current drinking patterns could lead to long term dependency issues. But the apparent failure of unit awareness campaigns cannot be ascribed exclusively to a hostile audience; the media itself is replete with ambiguous messages. The coverage of George Best in both life and death is a case in point. If Best’s passing failed to move the men, this is unsurprising given that press coverage often fell into discourse

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______________________________________________________________ that could be read as a celebration of a life that the men in the study could only dream of living. Here, then, the men used media narratives as well as personal experience to deflect concerns about binge drinking. Yet this analysis leads to constructive suggestions. The first is that more research is needed on the way that people narrate different pat-terns of alcohol consumption. In this, audiences should be conceived as active agents who stitch together different symbolic resources, as opposed to simple recipients of information whose power extends no further than accepting or rejecting alien media messages. In light of the fact that the drinkers in this survey did express discomfort with their own alcohol consumption, it is important to explore ways of making audiences participants in the creation of meaningful public discourse on drink and society. If George Best’s alcoholism did not serve as an adequate public warning, this probably has more to do with its articulation within the worlds of sport and masculinity, rather the machinations of media celebrity per se. His dying wishes counted for little against the force of his own, ultimately alienated celebrity image. But what this did show how the latter serves as a powerful orientation point in social navigation. The lesson is not to avoid popular culture, but to use it as a resource that publics can use to tell different drinking stories.

Notes 1

S Noar,‘A 10-year retrospective in health media campaigns: where do we go from here?’. Journal of Health Communication, vol. 11 (1), 2006, pp. 2142. 2 Ibid. 3 G Gerbner, ‘Cultivation analysis: an overview’. Mass Communication & Society, vol. 1 (3/4), Summer/Fall 1998, pp. 175-194. 4 Noar, op.cit. 5 A Duggan, ‘Understanding interpersonal communication processes across health contexts: advances in the last decade and challenges for the next decade’. Journal of Health Communication, vol. 11 (1), 2006, pp. 93-108. 6 K McComas, ‘Defining moments in risk communication research: 19962005’. Journal of Health Communication, vol. 11 (1), 2006, pp. 75-91. 7 K Kline, ‘A decade of research on health content in the media: the focus on health challenges and sociocultural context and attendant informational and ideological problems’. Journal of Health Communication, vol. 11 (1), 2006, pp. 43-59. 8 Ibid. 9 Ibid.

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V Freimuth, H Massett, & W Meltzer, W, ‘A descriptive analysis of 10 years of research published in the Journal of Health Communication’. Journal of Health Communication, vol. 11 (1), 2006, pp. 11-20. 11 D Giles, ‘Parasocial interaction: A review of the literature and a model for future research’. Media Psychology, vol. 4, 2002, pp. 279-305. 12 A Tolson, ‘Being yourself: the pursuit of authentic celebrity’. Discourse Studies, vol. 3 (4), November 2001, pp. 443-458 13 M Casey, M Allen, T Emmers-Sommer, et al. ‘When a celebrity con-tracts a disease: The example of Earvin “Magic” Johnson’s announcement that he was HIV positive’. Journal of Health Communication, vol. 8 (3), May 2003, pp. 249-265. 14 M Hamilton, E Mitchell, J Kiwanuka-Tondo & F Fleming, ‘A MetaAnalysis of the Effect of Mediated Health Communication Campaigns on Behaviour Change in the United States’. Journal of Health Communication, vol. 9 (1), January 2004, pp. 71-96. 15 J Dorsett & S Dickerson, ‘Advertising and alcohol consumption in the UK.’. International Journal of Advertising”, vol. 23 (2), May 2004, pp. 149171; M Chen, J Grube, M Bersamin, & E Waiters, ‘Alcohol advertising: what makes it attractive to youth?’. Journal of Health Communication, vol. 10 (6), September 2005, pp. 553-565; B Pinkleton, E Austin & Yuki Fujioka, ‘The Relationship of Perceived Beer Ad and PSA Quality to High School Students' Alcohol-Related Beliefs and Behaviours’. Journal of Broadcasting & Electronic Media, vol. 45 (4), Fall 2001, pp. 575-598; R Collins, T Schell, P Ellickson, & D McCaffrey, ‘Predictors of beer advertising awareness among eighth graders’. Addiction, vol. 98 (9), September 2003, pp. 1297-1307; J Unger, D Schuster, J Zogg & C Dent, ‘Alcohol advertising exposure and adolescent alcohol use: A comparison of exposure measures’. Addiction Research & Theory, vol. 11 (3), June 2003, pp. 177-194. 16  C McVeigh, K Hughes, C Lushey, & M Bellis, Preventing Violence: From Global Perspectives to National Action, Centre for Public Health: LJMU, 2005. 17 Gerbner, op.cit. 18 Ibid. 19 T Porter, Alcohol Harm Reduction Strategy: Qualitative Research to inform Development of Communication” Craig Ross Dawson, London, 2004. 20 McKomas, op.cit. 21 G Pitt, D Forrest, K Hughes & M Bellis, Young people’s exposure to alcohol: the role of radio and television, Centre for Public Health, LJMU, 2005. 22 E Ryan & K Hoerrner, ‘Let Your Conscience Be Your Guide: Smoking and Drinking in Disney’s Animated Classics’. Mass Communication & Society, vol. 7 (3), Summer 2004, pp. 261-278.

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Chen et al., op.cit. 553; Collins et al., op.cit. 1297; P Ellickson, R Collins & K Hambarsoomians, ‘Does alcohol advertising promote adolescent drinking?’. Addiction, vol. 100 (2), February 2005, pp. 235-246.; K Fleming, E Thorson & C Atkin, ‘Alcohol advertising exposure and perceptions: links with alcohol expectancies and intentions to drink or drinking in under aged youth and young adults’. Journal of Health Communication, vol. 9 (1), January 2004, pp. 3-29.; Y Fujioka & E Weintraub-Austin, ‘The Implications of Vantage Point in Parental Mediation of Television and Child's Attitudes Toward Drinking Alcohol’. Journal of Broadcasting & Electronic Media, vol 47 (3), September 2003, pp. 418-434.; D Mastro & C Atkins, ‘Exposure to alcohol billboards and beliefs and attitudes toward drinking among Mexican American high school students’. Howard Journal of Communications, vol. 13, April 2002 (2), pp. 129-151.; Pinkleton et al., op.cit., 575; Unger et al., op.cit., 177. 24 Lara Zwarun & Kirstie Farrar, ‘Doing what they say, saying what they mean: Self-regulatory compliance and depictions of drinking in alcohol commercials in televised sports’. Mass Communication & Society, vol. 8 (4), Fall 2005, pp. 347-371 25 J Andsager, E Austin & B Pinkleton, ‘Gender as a variable interpretation of alcohol related messages’, Communication Research, vol. 29 (3), April 2002, pp. 246-270.; L Baxter, R Hirokawa, J Lowe & P Nathan, ‘Dialogic voices in talk about drinking and pregnancy’. Journal of Applied Communication Research, vol. 32 (3), August 2004, pp. 224-248.; K Neuwirth & F Edward, ‘Peer and Social Influence on Opinion Expression: Combining the Theories of Planned Behaviour and the Spiral of Silence’. Communication Research, vol. 6 (6), December 2004, pp. 669-703.; R Rimal, ‘How Behaviours are Influenced by Perceived Norms: A Test of the Theory of Normative Social Behaviour’. Communication Research, vol. 32 (3), June 2005, pp. 389-414. H Jenkins, ‘Congressional testimony on media violence.’ MITCommunicationsForum.1999, January 1 2006, <Web.mit.edu/comm_forum/papers/jenkins-ct.html> 26 S Mohammed & A Thombre, ‘HIV/AIDS stories on the world wide web and the transformation perspective’. Journal of Health Communication, vol. 10 (4), June 2005, pp. 347-360. A DeSantis, ‘Smoke Screen: an ethnographic study of a cigar shop's collective rationalization’. Health Communication, vol. 14, 2002, pp. 167-198. 27 Jenny Kitzinger, Framing Sex Abuse, Pluto Press, London, 2004. 28 McKomas, op.cit. 29 David Murray, Citysafe & Knowsley Health & Social Care: Qualitative research Among residents of Liverpool & Knowsely aged 18-35 regarding the misuse of Alcohol, Murray Consultancy, Liverpool, 2006.

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P Lazarsfeld, B Berelson, & H Gaudet, The People’s Choice, Duell, Sloan & Pierce, New York, 1949; S Hall, ‘Encoding/Decoding’ , in Culture, Media & Language, S. Hall et al. (eds), Hutchinson, London, 1980, pp. 128-138. 31 A Hill, ‘The language of complaint’. Media, Culture & Society, vol. 22 (2), March 2000, pp. 233-236. 32 Desantis, op.cit. 33 G Noble, ‘Comfortable and relaxed: furnishing the home and nation’. Continuum: Journal of Media & Cultural Studies, vol. 16 (1), April 2002, pp. 53-66. 34 Murray, op.cit. 35 Best: decline of the golden Boy. BBC News Online, 14 June 2005, 6 June 2006, http://news.bbc.co.uk/1/hi/uk/4090840.stm. 36 N Couldry, The place of media power: Pilgrims and witnesses of the media age, Routledge, London, 2002.

Bibliography Andsager, J., Austin, E., & Pinkleton, B. ‘Gender as a variable in the interpretation of alcohol related messages’. Communication Research, vol. 29, April 2002, pp. 246-270. Baxter, L, Hirokawa, R., Lowe, J., & Nathan, P., ‘Dialogic voices in talk about drinking and pregnancy’. Journal of Applied Communication Research, vol. 32, August 2004, pp. 224-248. Best: decline of the golden Boy. 14 June 2005. http://news.bbc.co.uk/1/hi/ uk/4090840.stm. Viewed 6 June 2006. Casey, M., Allen, M., Emmers-Sommer, T., Sahlsten, E., Degooyer, D., Winers, A., Wagner, A. & Dun, T. ‘When a celebrity contracts a disease: The example of Earvin “Magic” Johnson’s announcement that he was HIV positive’. Journal of Health Communication, vol. 8, May 2003, pp. 249-265. Chen, M., Grube, J., Bersamin, M. & Waiters, E. ‘Alcohol advertising: what makes it attractive to youth’? Journal of Health Communication, vol. 10, September 2005, pp. 553-565. Collins, R., Schell, T., Ellickson, P. & McCaffrey, D. ‘Predictors of beer advertising awareness among eighth graders’. Addiction, vol. 98, September 2003, pp. 1297-1307.

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______________________________________________________________ Couldry, N. The place of media power: Pilgrims and witnesses of the media age. Routledge, London, 2002. DeSantis, A. ‘Smoke Screen: an ethnographic study of a cigar shop's collective rationalization’. Health Communication, vol. 14 2002, pp. 167198. Duggan, A. ‘Understanding interpersonal communication processes across health contexts: advances in the last decade and challenges for the next decade’. Journal of Health Communication, vol. 11 (1), January 2006, pp. 93-108. Dorsett, J. & Dickerson, S. ‘Advertising and alcohol consumption in the UK’. International Journal of Advertising, vol. 23, May 2004, pp. 149-171. Ellickson, P., Collins, R. & Hambarsoomians, K. ‘Does alcohol advertising promote adolescent drinking’? Addiction, vol. 100, February 2005, pp. 235246. Fleming, K., Thorson, E. & Atkin, C. ‘Alcohol advertising exposure and perceptions: links with alcohol expectancies and intentions to drink or drinking in under aged youth and young adults’. Journal of Health Communication, vol. 9, January 2004, pp. 3-29. Freimuth, V., Massett, H. & Meltzer, W, ‘A descriptive analysis of 10 years of research published in the Journal of Health Communication’. Journal of Health Communication, vol. 11, January 2006, pp. 11-20. Fujioka, Y. & Weintraub-Austin, E. ‘The Implications of Vantage Point in Parental Mediation of Television and Child's Attitudes Toward Drinking Alcohol’. Journal of Broadcasting & Electronic Media, vol. 47 September 2003, pp. 418-434. Gerbner, G. ‘Cultivation analysis: an overview’. Mass Communication & Society, vol. 1, Summer-Fall 1998, pp. 175-194. Giles, D. ‘Parasocial interaction: A review of the literature and a model for future research’. Media Psychology, vol. 4, 2002, pp. 279-305. Hall, S. ‘Encoding/Decoding’ , in Culture, Media & Language, S. Hall et al. (eds), Hutchinson, London, 1980, pp. 128-138.

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______________________________________________________________ Hamilton, M., Mitchell, E., Kiwanuka-Tondo, J., & Fleming, F. ‘A MetaAnalysis of the Effect of Mediated Health Communication Campaigns on Behaviour Change in the United State’s. Journal of Health Communication, vol. 9, January 2004, pp. 71-96. Hill, A. ‘The language of complaint’. Media, Culture & Society, vol. 22, March 2000, pp. 233-236. Jenkins, H. ‘Congressional testimony on media violence’. MITCommunicationsForum.1999, January 1 2006, <Web.mit.edu/comm_forum/papers/ jenkins-ct.html> Kitzinger, J. Framing Sex Abuse. Pluto Press, London, 2004. Kline, K. ‘A decade of research on health content in the media: the focus on health challenges and sociocultural context and attendant informational and ideological problems’. Journal of Health Communication, vol. 11, January 2006, pp. 43-59 Lazarsfeld, P., Berelson, B. & Gaudet, H. The People’s choice. Duell, Sloan & Pierce,New York, 1949. Mastro, D. & Atkins, C. ‘Exposure to alcohol billboards and beliefs and attitudes toward drinking among Mexican American high school students’. Howard Journal of Communications, vol. 13, April 2002, pp. 129-151 McComas, K. ‘Defining moments in risk communication research: 19962005’. Journal of Health Communication, vol. 11, January 2006, pp. 75-91. McVeigh C., Hughes, K., Lushey, C. & Bellis, M. Preventing Violence: From Global Perspectives to National Action, Centre for Public Health: LJMU, 2005. Meyer, G. ‘Diffusion methodology: time to innovate’? Journal of Health Communication, vol. 9, January 2004, pp. 59-69. Mohammed, S., & Thombre, A. ‘HIV/AIDS stories on the world wide web and the transformation perspective’. Journal of Health Communication, vol. 10, June 2005, pp. 347-360. Murray, D. Citysafe & Knowsley Health & Social Care: Qualitative research among residents of Liverpool & Knowsely aged 18-35 regarding the misuse of alcohol. Murray Consultancy, Liverpool, 2006.

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______________________________________________________________ Neuwirth, K. & Edward, F. ‘Peer and Social Influence on Opinion Expression: Combining the Theories of Planned Behaviour and the Spiral of Silence’. Communication Research, vol. 31, December 2004, pp. 669-703. Noar, S. ‘A 10-year retrospective in health media campaigns: where do we go from here?’. Journal of Health Communication, vol. 11, January 2006, pp. 21-42 Noble, G. ‘Comfortable and relaxed: furnishing the home and nation’. Continuum: Journal of Media & Cultural Studies, vol. 16, April 2002, pp. 53-66. Pinkleton, B., Austin, E. & Fujioka, Y. ‘The Relationship of Perceived Beer Ad and PSA Quality to High School Students' Alcohol-Related Beliefs and Behaviours’. Journal of Broadcasting & Electronic Media, vol. 45, Fall 2001, pp. 575-598. Pitt, G., Forrest, D., Hughes, K. & Bellis, M. Young people’s exposure to alcohol: the role of radio and television. Centre for Public Health, LJMU 2005. Porter, T. Alcohol Harm Reduction Strategy: Qualitative Research to in-form Development of Communication. Craig Ross Dawson, London, 2004. Rimal, R. ‘How Behaviours are Influenced by Perceived Norms: A Test of the Theory of Normative Social Behaviour’. Communication Research, vol. 32, June 2005, pp. 389-414. Ryan, E, & Hoerrner, K. Let Your Conscience Be Your Guide: Smoking and Drinking in Disney's Animated Classics. Mass Communication & Society, vol 7, Summer 2004, pp. 261-278. Tolson, A. 'Being yourself: the pursuit of authentic celebrity’. Discourse Studies, vol. 3, November 2001, pp. 443-458 Unger, J, Schuster, D, Zogg, J. & Dent, C. ‘Alcohol advertising exposure and adolescent alcohol use: A comparison of exposure measures’. Addiction Research & Theory, vol. 11, June 2003, pp. 177-194. Zwarun, L. & Farrar, K. ‘Doing what they say, saying what they mean: Selfregulatory compliance and depictions of drinking in alcohol commercials in televised sports’. Mass Communication & Society, vol. 8 Fall 2005, pp. 347371.

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Note on Contributor Andy Ruddock is a Lecturer in Communication & Media Studies at Monash University, Melbourne, Australia.

“I use drugs, but I am not a drug addict”: How Heroin and Cocaine Users Make Sense of Their Practice as a Healthy Behaviour Maria Caiata Zufferey Abstract The threshold between illness and health has been variable throughout the centuries, but in the actual context this frontier has changed quickly and significantly. Some conditions which were once considered normal have now become pathological, while some situations which were previously considered pathological are no longer considered as such. The case of drug use – and the case of heroin and cocaine use in particular – exemplifies this situation. Until the 1980s, abstinence was the only acceptable form of behaviour, whereas any use of heroin and cocaine was seen as a symptom of a pathological condition. Today, the situation has significantly changed in many European countries. For social, political, cultural and scientific reasons, drug use is no longer directly regarded as a problematic behaviour: drug use could be either the sign of a pathological condition or an ordinary practice, depending on the meaning given to the drug experience. The process of making sense in order to redefine what is normal and what is not could be called legitimization. This paper explores the concept of legitimization by using the results from a qualitative study on drug ad-diction recovery recently conducted in Switzerland. Keywords: Drug addiction, recreational drug use, harm reduction, normative uncertainty, legitimization. 1.

Introduction During the second part of the twentieth century and for many years, the use of heroin and cocaine1 in Europe has been considered both a form of deviance and a sort of illness.2 It was assumed that any kind of drug use would lead to addiction because of the characteristic of the sub-stance; moreover, once established, addiction was generally seen to be an incurable illness, as it is clearly shown by the common slogan “once an addict, always an addict.”3 The drug user was therefore considered an addict or on the path of becoming one. Since drug use was inevitably the symptom of a problematic condition, recovery from drug addiction required the termination of drug use completely and definitely. This was considered the individual’s only opportunity to regain social, psychological and physical health. However, even if one succeeded in abandoning drugs, the individual was always

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______________________________________________________________ considered a former drug addict, because of the possibility of relapse. For this reason, the individual had to be constantly vigilant. In this cultural context, the threshold between the pathological condition and the normal condition was clear: the use of heroin or cocaine was deviant and problematic, whereas non-use was the normal form of behaviour. There was, therefore, a clear prescription for what was healthy and what was unhealthy concerning drug use. Today, the situation has significantly changed in many European countries and in Switzerland in particular. For political, social, scientific and cultural reasons, the definition of drug – understood as a harmful psychoactive substance – has become unclear. Drug use is no longer directly regarded as a problematic behaviour: in some cases, it could be considered the sign of a pathological condition; in some others, it could be simply seen as an ordinary practice, depending on the meaning given to the drug experience.4 This paper explores the process of making sense by using the results from a qualitative study on drug addiction recovery.5 Firstly, some information about the methodological characteristics of the research and about the sample is provided. Secondly, the context of drug use in Switzerland is examined in order to understand the factors which have led to change the perception in this field. Thirdly, it is shown how occasional users of heroin and cocaine make sense of their behaviour in order to persuade themselves and their environment that they are not drug addicts. Fourthly, the supports needed for this process are illustrated. A brief conclusion will provide some general consideration on the process of making sense in the current social context. 2.

Methods and Sample The research was conducted between 1999 and 2004 in the Italianand French-speaking parts of Switzerland. In-depth interviews were completed with 31 former drug addicts who abandoned addiction in different ways (15 were abstinent, 9 were occasional users, 7 were engaged in longterm substitution programs).6 Two selection criteria of the population have been adopted. The first pertained to the self-definition of the recovery. Participants should define themselves as having been addicted to heroin and/or cocaine for at least one year and they should also consider themselves to be recovered for at least one year. The self-definition criterion was important in order to permit the point of view of the actor to serve as a guideline and in order to understand how participants made sense of the situation. Moreover, through self-definition it was possible to consider not only the traditional form of recovery (i.e. abstinence), but also to consider the new ways of abandoning drug addiction, by taking into account the experience of occasional users and of people

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______________________________________________________________ engaged in long-term substitution programs. The second selection criterion was that participants had to have been employed for at least one year. This second criterion was necessary in order to add a more objective indicator to participant’s self-definition. It is reasonable to believe that, if former drug addicts succeed in obtaining and maintaining a job, it is because they have managed to conform to the requirements and the constraints of the conventional society, and because they have restored a feeling of trust around themselves. The interviewees were mostly male (there were only 4 females), between 19 and 54 years old at the time of the interview and it had been between one and 17 years since their recovery. The length of their drug addiction period ranged from a minimum of one year to 19 years, and most of the people had been compulsive users of both heroin and cocaine. Their socio-cultural background was diverse: ten people had completed high school and at the time of the interview they were working as shop assistant (1), mason (2), unqualified social worker (2), unskilled worker (2), waiter (1), dishwasher (1) and disc jockey (1); 13 people had a certificate of apprenticeship and were working as electrician (1), mechanic (3), bank employee (3), manager of a small print firm (1), cook (2), carpenter (2), unqualified social worker (1); two people had a high school certificate and were working as computer programmers; two people had a university degree and were working as jurists; four people were following a training course as either a computer programmer (1), shop assistant (1), hotel assistant (1), or social worker (1). Every person was interviewed twice, each time for approximately one and a half hours. The interviews were recorded, transcribed and analysed, following the main principles of the grounded theory7. 3.

The Factors Underlying the Changing of Perception in Drug Use In the past 15 years, the social and political context of drug use has substantially changed in Switzerland. Due to this evolution, the perception in drug use has been transformed. Five main events can be identified, that have played a role in this cultural evolution. •

The development of harm reduction measures. Since 1991, the Swiss Government has adopted a pragmatic policy of drug use in response to different problems, that strongly appeared during the 1980s, namely the emergence of the “open” drug scenes in some Swiss cities8 and the spread of HIV virus among drug users. Harm reduction measures entail for example the distribution of clean syringes, the medical prescription of heroin, the offer of low-threshold assistance, etc. The ultimate goal is to maintain as far as

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•

•

possible – or to restore – the social, physical and psychological health of drug users and to prevent permanent damages. Therefore, in this model of fight against drugs the fundamental objective is not abstinence, but the reintegration of the drug addict into society.9 The consequence of this pragmatic policy has been the normalisation of the profile and the social representation of illegal drug users: on one hand, the harm reduction measures have enabled the individual to adopt a less illegal and less stigmatised lifestyle; on the other hand, this pragmatic policy was grounded on the representation of the drug user as a partner of the prevention campaign, thus promoting his image as a reason-able and responsible individual. The emergence of forms of controlled drug use. Recent research has shown that some individuals consume heroin and cocaine and nevertheless maintain – at least apparently – a conventional lifestyle: through the accomplishment of several strategies, they manage to use drugs and – at the same time – to have an employment, to have hobbies, to assume their social responsibilities, etc.10 The number of these controlled users is difficult to establish, because they often constitute a hidden population; nevertheless, some research show that this kind of practice is more common than what is usually thought.11 Beside the heroin and cocaine controlled users, there are also people engaged in long-term substitution programs, who manage to keep a job and who assume their familiar responsibilities.12 It seems, then, possible to be a drug user – and sometimes even to be a physically dependent drug user – without being immediately or inevitably involved in a spiral of degradation. The motivation of this form of controlled practice is generally self-stimulation or self-medication: heroin and cocaine, on one hand, and methadone, on the other hand, are used as a support for facing the reality and not, as in the 1970s and 1980s, as a mean for avoiding reality or for revolting against it.13 In the past decade, therefore, the profile and the social representation of the drug user have significantly changed and have become more acceptable from a social point of view. The link between legal and illegal psychotropic substances. Recently, the threshold separating the different

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•

psychotropic substances – in particular alcohol and psychotropic medicines, on one hand, and heroin, cocaine and cannabis, on the other hand – has been questioned. According to some research,14 it is not the drug itself which makes the addict, but rather the relationship a person has with a particular substance. In the last ten years, this representation has become very popular. Even at a political level, the wish to overtake the old distinctions among the substances has been emphasized. In fact, the current tendency is to avoid to talk about specific substances, but to underline the global idea of health promotion.15 According to this representation, the compulsive use of heroin and cocaine does not eliminate the possibility that these substances can be used in a controlled way, exactly as alcohol can be consumed both in a chaotic and in a moderate way. The valorisation of cultural pluralism. A certain attitude of tolerance has developed towards these forms of drug use which could be considered a private habit: according to this state of mind, if drug consumption does not have any consequences on the social order, there is no reason to interfere in the choices of an adult individual.16 Drug use is considered an inevitable characteristic of any kind of society. Therefore, the problem is not to forbid consumption, but to learn how to live together and how to prevent misuse and problems. This was one of the motivations of the decriminalization attempts of cannabis and, more in general, of all the psychotropic substances during the early 2000s.17

Because of these political, social, scientific and cultural reasons, the representation of drug use has significantly changed in recent years. The concept of drug addiction has been questioned; the normality concerning drug consumption has become imprecise and variable. What is healthy and what is unhealthy in this field? How to distinguish a conventional habit from a pathological behaviour? When can a drug user be seen as an ordinary individual and when must he be considered an ill person? There is not a clear pointer which shows when the behaviour is problematic and when not: as it has been shown, the use or the non-use of drug is not an indicator, anymore, and even dependence cannot be considered a sufficient discriminating factor.18 Actually, as there are not pre-determined and univocal criteria for definition, the nature of drug practice cannot be attested a priori: it must be defined during the practice by the drug user

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______________________________________________________________ himself and it must be validated by the drug user’s environment. The individual must make sense for himself in order to clarify who he is and what kind of relationship he has with drugs; at the same time, he must obtain the validation from his environment in order to establish his identity from a social point of view. Then, how do users of heroin and cocaine make sense of their behaviour in order to persuade themselves and their environment that they are not drug addicts, even if they use drugs? How do they succeed in presenting themselves as predictable and not dangerous individuals? 4.

“I use drugs, but I am not a drug addict” Two main aspects are emphasized by the drug user in order to show the difference between his practice and a problematic behaviour: the meaning and the modality of drug consumption. As far as the meaning is concerned, drug consumption is considered a problematic behaviour when it represents an obsession or a tribulation for the individual. To feel greed and frustration or to have disagreeable collateral effects when using drugs is a warning signal: if the individual continues his practice despite the discomfort which is produced, his relationship with the substance can be considered a problematic one. In this case, it is reasonable to think that drug use is subjugating the individual. Thus, one cannot be considered to be the “master on board” of one’s life, nor reliable or deserving of trust, and this even if there is not any physical dependence. To be considered a conventional practice, drug use must have a completely positive meaning. The drug user who refuses to regard himself as a problematic individual must claim that his behaviour represents for him a constructive pleasure: drug use is, for example, presented as a way of taking care of himself, as a kind of entertainment, as a means of relaxation, or as a means for self-experimentation. “I do exactly as you do when you drink a good cognac.” “When you are under stress, what do you do? You have a cup of tea, you take a bath? I like to smoke a bit of heroin.” “If drug is a celebration of your pleasure to live, there is no problem. Yes, if you just want to have a good moment, there is no danger.” Beyond all these motivations, it is possible to notice some collective values, as for example the well-being, the conviviality, the discovery of new sensations. By attributing to the drug practice a current social value, the individual makes acceptable a behaviour which has been for a long time culturally unacceptable. Finally, to be a normal behaviour, drug use must be the opposite of an obsessive and distressing practice: it must be a recreational experience, namely a voluntary activity, that occupies a limited space in the individual’s lifestyle, that does not threaten his other activities and responsibilities, and that is accomplished for improving the individual’s

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______________________________________________________________ sense of well-being. “To use a drug is like to taste the cherry on the cake. But surely, your cake must not be a cherry cake!” As for the modality, the individual who wants to make sense of his practice as a recreational use must respect at least three main rules. These rules are a kind of action code and they demonstrate that the individual’s drug use is not a compulsive practice. Firstly, the recreational drug user must use drugs only in an adequate setting. The characteristics of this one depend on the goal which underlies drug use; for example, if the purpose is to have a moment of relaxation, the conditions of the practice must be coherent with the motivation expressed (“I use drugs only when I am alone at home, the children not around, the whole evening for me, sofa, whiskey and music of Pink Floyd. I would never think to use drugs in the street. In the street there isn’t any pleasure.”) Secondly, the drug user must preserve his health while using drugs. A recreational practice is supposed not to damage the physical, psychological and social condition of the individual. This rule has many practical implications; for example, drug use must be sporadic (“it must not happen daily”), the sub-stance must be of good quality (“if you have a drug of good quality, you have much less secondary effects, much fewer danger”), the body must be treated with care (“you must not poison yourself stupidly”), the reputation must be protected (“I am always very discreet, this is a gold rule, to be the most discreet you can”), the other responsibilities must not be affected (“I never use drugs in front of my children”). Thirdly, the drug user must respect some basic ethics; for example, a recreational practice cannot have a degrading effect on the moral integrity of the individual (“I refuse to steal or to prostitute myself, if I have no money, I don’t buy it”). The three rules which underline the recreational drug use are not invented by the individual himself. They are grounded on the social definition of recreational practice. In the current cultural context, this is a free activity that takes place in adequate contexts, that preserves – or even promotes – the individual’s health, and that is ethically correct19. Thus, by adapting the social representation of the recreational activity to his drug practice, the individual demonstrates its normality. To attribute an acceptable meaning to the drug practice and to define the appropriate consumption rules is an everlasting effort: the individual must pay attention to his behaviour, he must question himself about his expectations and the sense of what he is doing, he must monitor the conditions in which this behaviour takes place. Thus, using drugs in a recreational way is not an automatic gesture; on the contrary, it is a thoughtout behaviour, and one that requires a constant monitoring. “You always have to be aware of what you are doing, I am, at any time, aware (…). What I do, does not go unnoticed, I watch myself using drugs.”

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The Supports of the Process of Making Sense To make sense of drug practice as a recreational activity, the individual uses collective values and representations. By doing this, he presents himself as an ordinary and healthy citizen, he declares that he has an unproblematic relationship with the drug, he clarifies that he plans to behave according to the social norms. He manages in this way to affirm his identity as a trustworthy individual, despite the use of a substance which could potentially transform him in an unreliable person. This process of making sense entails the production of a narrative: the individual must provide a biographical discourse about himself and his drug practice. However, not every narrative succeeds in presenting drug use as a recreational practice: to make sense, the narrative must be persuasive and acceptable. The above discussion on the meaning and modality of drug use is an example of acceptable narrative. Some supports are needed to provide an acceptable narrative. Firstly, the individual needs interlocutors, i.e. people with whom he can formulate and test his discourse. Interlocutors offer the individual the space to think over his behaviour and to talk about it, they suggest arguments which can be used in order to make the narrative plausible, they give indications about the admissibility of the narrative, they offer the opportunity to readjust it. Interlocutors are not necessary conscious of participating in the process of making sense. The role of the interlocutor can be played, for example, by a social worker, a psychotherapist or a physician, but also by a family member, a priest or simply an acquaintance. Actually, everybody who participates in the conventional society and who interacts with the drug user can be an interlocutor, through providing the opportunity to elaborate the narrative in a socially admissible way. Secondly, the drug user must build his narrative by referring to common worlds. These are usually constituted by shared knowledge, social values and collective representations.20 These common worlds act as guarantors of legitimacy: the individual uses them to defend the admissibility of his practice. For example, to say that a good quality drug does not affect the individual’s health is a quite widespread theory; if the drug consumer claims that he is not in danger because he always tests the substance before absorbing it, he is likely to be believed. In fact, he is using an established argument (in this case, a scientific argument). Obviously, a single reference to a common word is not enough: the more the narrative presents credible arguments, the more it can be validated. Thirdly, to make sense in a successful way, the drug user must link the arguments together logically, must avoid contradictions, must ex-plain and justify efficiently what he does and why, he must use good examples in order to illustrate the nature of his behaviour. Thus, some argumentative abilities are required in order to provide a plausible narrative.

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______________________________________________________________ Fourthly, the narrative cannot be just a speech, even if coherent and grounded: there must be a visible correspondence between what the drug user says and how the drug user behaves. Therefore, the individual needs social and material resources in order to act in conformity with his way of explaining and justifying the drug practice. For example, if the drug user says that he consumes only substances of excellent quality, he must in fact have enough money to buy this kind of product. Otherwise, his narrative would seem a “biographical illusion.”21 Interlocutors, guarantors of legitimacy, argumentative abilities and social and material resources are essential conditions in order to make sense of the drug practice as an ordinary behaviour. These supports clearly illustrate the nature of this reflexive work: making sense is a narrative and social process. Firstly, it is a narrative process because symbols and meaning are produced through language.22 Secondly, it is a social process be-cause the individual does not make sense of his experience alone: the sense is always the result of a negotiation between the individual and his environment.23 As a result, the process of making sense in order to redefine what is normal and what is not concerning drug use could be called legitimization. This concept has the major advantage of emphasizing the essential characteristics of the reflexive process. 6.

Conclusion In the light of the present analysis, legitimization appears as a complex and laborious process. The drug user has to make sense of his practice so as to make it acceptable from his own point of view and from the point of view of his environment. By doing this, he takes part in the creation of a “new normality.” However, although the individual plays an essential role in this process, he is far from being the only actor: this “new normality” is an entirely social construction, because it is constantly negotiated with the environment. Thus, as legitimization is never definitively established, the individual incessantly needs to make sense. Therefore, this process can be a tiring work, a source of anxiety and tiredness: the choice someone does is not an acceptable choice as a matter of principle, but it must always be justified. Legitimization also appears as a potentially discriminatory pro-cess. To provide an acceptable narrative it is necessary to have some sup-ports. However, individuals do not always possess the same supports, and their quality can be very different. The capacity of providing a persuasive and acceptable narrative depends on the familiarity with the spoken word. To formulate a coherent discourse about himself and his experience is a competence which develops differently according to the social position of the individual.24 Moreover, the social position defines the type of interlocutors the person is going to frequent, the arguments he will discover and adopt and the material resources he will have at his disposal in order to act in

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______________________________________________________________ conformity with his discourse. In this light, the capacity and the way of making sense can be very different from an individual to another. It would be interesting, then, to consider the social characteristics of the different groups of former drug addicts. Who are those who choose abstinence? Who are those who become occasional users? Who are those who recover through long-term substitution programs? Their narratives are different,25 but is their social condition different as well? This qualitative study was not able to identify significant social differences among these three groups, because of the restricted number of the interviewees, but a large quantitative study could provide useful answers to these questions. These considerations about the general characteristics of the legitimization process do not concern only the matter of drug use. Legitimization is nowadays a widespread and necessary process. Since the cur-rent social context is characterised by the multiplication of behavioural patterns, the individual must guide himself through heterogeneous options occurring in different situations. In many cases, he has to build his own way of acting by giving himself and the others the sense of his behaviour. This is the situation, for example, of young people who have to decide about their education, without being certain of getting a job at the end of their studies; of parents who have to find the way of exerting their role outside the traditional institution of the family; and of people excluded from employment and who are forced to identify alternative ways of finding their place in society. The individual paths become less and less standardised, and legitimization seems to be the way of making them acceptable. It can then be asked, how do people make sense of their choices in the different situations? Where do guarantors of legitimacy come from? How are supports, that are needed for the legitimization process, distributed? And how is it possible to sustain individuals’ effort in making sense of their actions? These are only some of the questions to be considered in future scientific and political discussions.

Notes 1

In the rest of the paper, heroin and cocaine will be called simply “drugs.” R Castel (ed), Les Sorties de la toxicomanie, types, trajectoires, tonalités, Éditions Universitaires, Fribourg, 1998. 3 Alcoholics Anonymous, Alcoholics Anonymous: The story of how many thousands of men and women have recovered from alcoholism, Alcoholics Anonymous World Services, New York, 1976. 2

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A Ogien, ‘Évaluation et sens commun. L’objectivation du phénomène de l’usage des drogues’ in ML Cesoni (ed), Usage de stupéfiants: politiques européennes, Éditions Georg, Genève, 1996, p. 66. 5 This study has recently been published. See M Caiata Zufferey, De la toxicomanie à la conventionalité. Sociologie des sorties de la drogue à l’époque de la réduction des risques, Seismoverlag, Zürich, 2006. 6 In this paper, all the transcriptions come exclusively from the interviews with the occasional users, in conformity with the proposed topic. 7 B Glaser & A Strauss, The Discovery of Grounded Theory, Aldine, Chicago, 1967. See also A Strauss & J Corbin, Basics of Qualitative Research, Sage, London, 1990. 8 The most famous “open” drug scenes were the park “Platzspitz” and the railway station “Letten” in Zürich. 9 Swiss Federal Office of Public Health, Swiss Drugs Policy, Bern, September 2000. 10 M Caiata, ‘Le consommateur intégré: entre adaptation à la réalité et production de la réalité’ in C Faugeron & M Kokoreff (eds), Société avec drogues. Enjeux et limites, Éditions Érès, Ramonville Saint-Agne, 2002, pp. 63-77. See also MH Soulet, M Caiata Zufferey & K Oeuvray, Gérer sa consommation. Drogues dures et enjeu de conventionnalité, Éditions Universitaires, Fribourg, 2002. 11 A research of the Institute for Social and Preventive Medicine of Lausanne estimated that in 1992 there were between 9 000 and 24 000 people using heroin and cocaine at least once per week in Switzerland, and this without being known by the social and therapeutic institutions. M Cattaneo, F Dubois-Arber, A Lehthold & F Paccaud, Évaluation des mesures de la Confédération destinées à réduire les problèmes liés à la toxicomanie. Phase I, Bilan initial 1990-1992, Institut universitaire de médecine sociale et préventive, Lausanne, 1993. 12 At the end of 1999, there were 15 000 people engaged in substitution programs in Switzerland, among whom there are people with a job and with familiar responsibilities. Swiss Federal Office of Public Health, op. cit. 13 A Ehrenberg & P Mignon (eds), Drogues, politique et société, Le Monde Éditions/Éditions Descartes, Paris, 1992. 14 F Trovero, S Pirot, JP Tassin & F Facy, Drogues et toxicomanies: neurobiologie, épidémiologie, Éditions Nathan, Paris, 1993. 15 JP Gervasoni, F Dubois-Arber, F Benninghoff, B Spencer, T Devos & F Paccaud, Évaluation des mesures de la Confédération destinées à réduire les problèmes liés à la toxicomanie. Deuxième rapport de synthèse 1990-1996. Version abrégée, Institut universitaire de médecine sociale et préventive, Lausanne, 1996.

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S Cattacin, B Lucas & S Vetter, Modèles de politique en matière de drogue: une comparaison de six réalités européennes, Éditions L’ Harmattan, Paris, 1996. 17 Conseil Fédéral Suisse, Message concernant la révision de la loi sur les stupéfiants, Bern, 9 mars 2001. 18 As it has been mentioned before, it is possible to be physically de-pendent on a substance and nevertheless to succeed in maintaining a conventional lifestyle; on the other hand, it is possible not to develop any physical dependence – like in the case of cocaine use – and despite this to be completely subjugated to the substance. 19 J Dumazedier, Vers une civilisation du loisir?, Éditions du Seuil, Paris, 1972. 20 P Berger & T Luckmann, The Social Construction of Reality: A Treatise its the Sociology of Knowledge, Anchor Books, Garden City, New York, 1966. 21 JC Kaufmann, Ego. Pour une sociologie de l’individu. Une autre vision de l’homme et de la construction du sujet, Éditions Nathan, Paris, 2001, p. 168. 22 GH Mead, Mind, Self, and Society, University of Chicago Press, Chicago, 1934. 23 C Geertz, The Interpretation of cultures, Hutchinson, London, 1975. 24 P Ricoeur, Le Juste 2, Éditions Esprit, Paris, 2001. 25 In this paper only narratives of occasional users have been considered, but the research has also analyzed the narratives of those who have be-come abstinent, and of those who are engaged in long-term substitution programs. For more information, see Caiata Zufferey, op. cit.

Bibliography Alcoholics Anonymous, Alcoholics Anonymous: The story of how many thousands of men and women have recovered from alcoholism. Alcoholics Anonymous World Services, New York, 1976. Berger, P. & Luckmann, T., The Social Construction of Reality: A Treatise in the Sociology of Knowledge. Anchor Books, Garden City, New York, 1966. Caiata, M., ‘Le consommateur intégré: entre adaptation à la réalité et production de la réalité’ in Faugeron, C. & Kokoreff, M. (eds), Société avec drogues. Enjeux et limites. Éditions Érès, Ramonville Saint-Agne, 2002, pp. 63-77.

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______________________________________________________________ Caiata Zufferey, M., De la toxicomanie à la conventionalité. Sociologie des sorties de la drogue à l’époque de la réduction des risques. Seismoverlag, Zürich, 2006. Castel, R. (ed), Les Sorties de la toxicomanie, types, trajectoires, tonalités. Éditions Universitaires, Fribourg, 1998. Cattacin, S., Lucas B. & Vetter S., Modèles de politique en matière de drogue: une comparaison de six réalités européennes. Éditions L’Harmattan, Paris, 1996. Cattaneo, M., Dubois-Arber F., Lehthold A. & Paccaud F, Évaluation des mesures de la Confédération destinées à réduire les problèmes liés à la toxicomanie. Phase I, Bilan initial 1990-1992. Institut universitaire de médecine sociale et préventive, Lausanne, 1993. Conseil Fédéral Suisse, Message concernant la révision de la loi sur les stupéfiants. Bern, 9 mars 2001. Dumazedier, J., Vers une civilisation du loisir ? Éditions du Seuil, Paris, 1972. Ehrenberg, A. & Mignon, P. (eds), Drogues, politique et société. Le Monde Éditions/Éditions Descartes, Paris, 1992. Geertz, C., The Interpretation of cultures. Hutchinson, London, 1975. Gervasoni, JP., Dubois-Arber F., Benninghoff F., Spencer B., Devos T. & Paccaud F., Évaluation des mesures de la Confédération destinées à réduire les problèmes liés à la toxicomanie. Deuxième rapport de synthèse 19901996. Version abrégée. Institut universitaire de médecine sociale et préventive, Lausanne, 1996. Glaser, B. & Strauss, A., The Discovery of Grounded Theory. Aldine, Chicago, 1967. Kaufmann, JC., Ego. Pour une sociologie de l’individu. Une autre vision de l’homme et de la construction du sujet. Éditions Nathan, Paris, 2001. Mead, GH., Mind, Self, and Society. University of Chicago Press, Chicago, 1934.

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______________________________________________________________ Ogien, A., ‘Évaluation et sens commun. L’objectivation du phénomène de l’usage des drogues’ in Cesoni, ML., (ed), Usage de stupéfiants: politiques européennes. Éditions Georg, Genève, 1996, p. 57-73. Ricoeur, P., Le Juste 2. Éditions Esprit, Paris, 2001. Soulet, MH., Caiata Zufferey M. & Oeuvray K., Gérer sa consommation. Drogues dures et enjeu de conventionnalité. Éditions Universitaires, Fribourg, 2002. Strauss, A. & Corbin, J., Basics of Qualitative Research. Sage, London, 1990. Swiss Federal Office of Public Health, Swiss Drugs Policy. Bern, September 2000. Trovero, F., Pirot S., Tassin JP. & Facy F., Drogues et toxicomanies: neurobiologie, épidémiologie. Éditions Nathan, Paris, 1993.

Note on Contributor Maria Caiata Zufferey holds a PhD in sociology and is Senior Researcher at the Health Care Communication Laboratory, School of Communication Sciences, University of Lugano (Switzerland). She is currently working on the relationship between doctor and patient in the information age, as well as on the design and evaluation of web-sites and virtual communities for enhancing self-management of chronic diseases.

Abnormal Normality: Addiction, Identity and the Problem of Normal Kimmo Saaristo Abstract A disease concept of addiction is often used in many rehabilitation programmes. This paper uses empirical data gathered in one treatment institution where the treatment is based on the idea of addiction as a disease. This paper will scrutinize the questions of addiction, identity, and normality. In order to become clean from drugs, there must also be fundamental changes in one’s beliefs and behaviours. Old habits must be rejected, a former life of using drugs must be defined as destructive and biased. A new Self is shaped, a Self able to live a ‘normal life.’ At the same time, however, a paradox becomes evident: Firstly, using drugs and being an addict are usually considered to be abnormal (by society at large). But, secondly, in the process of recovery drug addicts must accept their addiction, and that the addiction is a chronic disease. According to this view, then, the normality of a “recovering addict” is always based on “abnormality.” This paper will examine these issues of normality and abnormality, health and addiction, and the interconnections among these concepts. It is argued that these questions of normality and disease are in fact more general: any kind of serious illness usually requires “identity work” of some kind. Keywords: addiction, disease, identity, normality, recovery. 1.

Introduction A former drug addict, now in recovery, says in his diary that be-fore he came to the treatment institution in question, he had never even heard the term “addiction,” and that the idea of addiction as a disease was completely new to him. Now, in the middle of the treatment process, he is little by little transforming from a junkie to a recovering addict. This trans-formation, on the one hand, consists of giving up old habits and learning from the past; on the other hand it is about taking in new ideas and learning new ways of life. And, as stated above, with this transformation comes a whole new vocabulary: he is no longer a junkie but a recovering addict, not a loser but someone who has an incurable disease. More than anything, however, the transformation is about constructing a new identity and then returning to (socalled) normal everyday life. In this article I am going to closely read diary entries written by drug addicts now in recovery. I am going to take a “three-step program” through the interconnections between addiction, identity, and normality. The first step

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______________________________________________________________ is about understanding addiction as a disease, and then, in the second step, the focus is on how addiction becomes the cornerstone for a new identity of a recovering addict. This, thirdly, raises questions about normality. For example, what is the normality of a recovering addict? And more generally, is it not so that any kind of serious illness usually requires “identity work” of some kind and that the question of normality is then also evident? A disease concept of addiction is often espoused in different rehabilitation programmes. The best known of these is, of course, the Alcoholics Anonymous (AA) movement. It has been said that the whole idea of addiction as a disease actually has its roots in AA.1 In this paper, I will use the empirical data gathered in a residential treatment institution, Mikkeli Community, in eastern Finland. The treatment at this institution is based on the idea of addiction as a disease. At the same time, in order to become clean from drugs, there must be fundamental changes in the addict’s beliefs and behaviours; in fact, there must be a change of life altogether. The treatment in the Mikkeli Community is abstinence oriented and comprehensive. In many ways it is based on the principles of AA, but it also has many similarities with the so called Minnesota Model.2 The aim of the Mikkeli Community is, to put it simply, that one must transform from a junkie to a recovering addict and to shape a new Self, a Self able to live a ‘normal life.’ This new self, however, is based on the disease concept of addiction. Using drugs and being an addict is usually considered as something abnormal. Although the actual use of drugs may cease, according to the disease concept of addiction, an addict is al-ways an addict, and he or she is never fully cured from addiction. This, then, necessitates that an addict identity is adopted. The question of identity has frequently been discussed in research on substance abuse. For instance, Anja Koski-Jännes has written about identity projects and how these are interconnected to rehabilitation;3 Heath C. Hoffman´s research was on “moral careers” and identities in AA meetings;4 and Adam Rafalovich has written an article about the “recovering addict’s identity.”5 However, the keyword in this article is normality rather than identity, although the latter is also important. What I am going to suggest at the end of this article is that this new Self of a recovering addict is actually an abnormality within normality. This means that a recovering addict may “act normal,” like any one of us. At the same time, however, he or she must keep perhaps one important factor of his or her identity and life (namely, the addiction) in secrecy. In order not to be branded as a “junkie,” it may often be better to refrain from references to one’s addiction, at least in front of strangers. Thus, we may ask, is normality in fact something doable, not something “natural”?

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______________________________________________________________ A. Empirical Material I examine here addicts’ own accounts of their drug history. The empirical material for the study has been collected in Mikkeli-Yhteisö (‘Mikkeli Community’) which is a therapeutic community established in 1998 located near the city of Mikkeli (Finland). The community serves adolescents and young adults over 18 years of age who have substance addictions. The Mikkeli Community aims at stopping drug (or, in some cases, alcohol) abuse among its inmates and rehabilitating them in order to give them the possibility to have a normal life in society. The functional model of the community is based on the Daytop model (an approach developed in the United States) and on the principles of community education.6 The rehabilitation programme usually takes from 12 to 14 months, and no medication is used during that time. The data as a whole consists of interviews, life stories (written by the [former] drug abusers now in treatment in the community), diaries which are kept during the stay in the community as part of the treatment process, and documents (for example, minutes of the meetings in the MikkeliCommunity, written assessments, and so on). In this article, all citations are taken from the diaries (n=15). Ethical questions and data protection in the research is strictly taken into account in all phases. Written consent has been obtained from the subjects. All personal details have been removed from the data. The ethical code guidelines given by the data protection authorities were followed at all phases of the research. B. Background: The Mikkeli Community as a Treatment Institution The clients in the Mikkeli Community are called “pupils” be-cause they are learning to live a new life without drugs. However, in this paper I will use the concept “inmate.” This stems from the writings of Erving Goffman, especially his ideas about institutions. The Mikkeli Com-munity is a strictly limited community. It has tight regulations and clear guidelines for the daily behaviour of its inhabitants. Although the inmates are voluntarily living in the community, there is some resemblance to the idea of the “total institution” as described by Goffman in his book Asylums.7 With the concept of the total institution, he especially (but not merely) refers to prisons, mental hospitals and the like. Goffman lists total institutions in five rough groupings. The fourth type, which includes, for example, army barracks and boarding schools, is the closest description of the Mikkeli Community: “institutions purportedly established the better to pursue some work like task and justifying themselves only to these instrumental grounds.” According to Goffman, a basic social arrangement in modern society is that the individual tends to sleep, play and work in different places and with different co-participants. In total institutions, however, there are no

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______________________________________________________________ barriers ordinarily separating these three spheres of life. Instead, all aspects of life are conducted in the same place and daily activities are carried out alongside other participants, all of whom are treated alike. Also, all phases of the day’s activities are tightly scheduled, and all activities are brought together into a single rational plan designed to fulfil the aims of the institution.8 Roughly speaking, this is the way the daily programme is organised in the Mikkeli Community, too. Of course, contrary to the example of prisons, an inmate in the Mikkeli Community is always free to leave. Still, if one chooses the rehabilitation programme in the community, one must also obey its rules. If one fails to do that, he or she can be sent home. The social life in the Mikkeli Community is restricted inside the community, particularly so in the early stages of the treatment process. Connections to the outside world are very limited. For example, normally all outgoing phone calls are prohibited, and even phone calls to close relatives have to be scheduled in advance with the staff. (There are a few exceptions, such as calls to a social worker or lawyer but these, too, have to be scheduled.) Only after several weeks in the community are the inmates allowed to take short visits to town, first with an escort, and in the final stages of rehabilitation, presuming that everything else has gone well, they may visit their hometown.9 2.

The First Step: “Addiction is a Disease” The drug rehabilitation programme taking place in the Mikkeli Community proceeds from step to step like the recovery programme of AA or Narcotics Anonymous (NA). Each step has its own objectives, and for every step one must complete what are called step exercises. In these exercises, for example, attitudes in relation to intoxicants are surveyed. On the very first step, that is, right at the beginning of the rehabilitation programme, one must admit that he or she is powerless over drugs. The basic idea of the rehabilitation programme is, that addiction is a disease, and that the members of the community must internalise this view. It is also essential that the inmates understand that the problem of dependence does not disappear just by stopping the use of drugs; they still have the disease, and if they do not go along with that view, then there is a considerable risk of relapsing. I am only in the beginning of my recovery process, and I still have plenty to do, for the rest of my life. I no longer think, that I struggle with my disease, but in-stead, I now accept my disease and I am learning to live with it. (Cit. 1) Thus, the construction of a new identity begins with selfidentification as an addict and with the understanding that the addiction is a

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______________________________________________________________ disease. In the background there is a thought that in order to handle substance abuse, one must first recognise one’s addiction, and then accept the disease. Furthermore, addiction is also understood as a disease from which one can never entirely recover but which can be kept in control with the right kind of behaviour. Here it is not possible to analyse addiction as a disease in more detail. In short, addiction is often defined by tolerance, withdrawal, and craving.10 That is, an experienced and habitual user needs a stronger dose of the drug, there will be physical and psychological discomfort when ceasing to take the drugs, and a drug addict is ready to sacrifice everything for drugs, even to the point of self-destruction. In one form or another, these three factors are usually used when one is trying to define what really constitutes addiction. Even in the major classifications of psychiatric disorders, such as The International Classification of Diseases (ICD-10) or the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV), the criteria of addiction are defined accordingly. The starting point for most addiction concepts seems to be, as Robin Room has argued, craving, that is “continued use despite knowledge of harmful consequences of the use.”11 Thus, the emphasis is on the loss of control over alcohol or drug use, leading to a loss of control over one’s whole life. From the point of view of normality, this is important. Namely, inversely this means that a normal individual has control over his or her use of substances and over his or her life. In the diary entries written by the inmates in the community, addiction is connected with three concepts: chronicity, comprehensiveness, and acceptance. Firstly, addiction is understood as a chronic disease. This means, as stated above, that a total recovery from the disease of addiction is not possible: “once an addict, always an addict.” Secondly, addiction is understood as a total disease: it has some kind of effect on (almost) everything an addict does and, thirdly, acceptance of the disease is requisite for recovery. The chronic nature of addiction is essential. Even though one’s substance abuse may have ended and even though there has been some progress in one’s recovery process, this does not mean that the recovery is total. To accept the disease is also to accept its chronic nature. Further-more, when total recovery is by definition impossible, then the aim is to keep the disease under control. This is helped, for example, by the meetings of Narcotics Anonymous: I realized that I need Narcotics Anonymous just as I need my medication for my epilepsy. If I don’t take my medication, I’ll have an epileptic fit and I end up in the

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______________________________________________________________ hospital. Likewise, if I don’t attend the NA meeting, I’ll have a fit and I end up taking drugs again. (Cit. 2) The fixity and incurability of the disease are important factors that mould addicts’ identities. At the same time, addiction is also a comprehensive and a total disease. This means, in its simplest form, that an addict must always abstain from any kind of intoxicant. There is no such thing as “controllable use,” whether it is alcohol or illicit drugs. The only goal in the Mikkeli Community (and in, for example, AA and the Minnesota Model as well) is total abstinence. A comprehensive disease also means that the disease is always there. As the next couple of extracts illustrate, the addiction becomes a crucial part of identity, something an addict can never escape from and something through which an addict interprets his or her thoughts, feelings, and actions. If I only could take a couple of weeks vacation from this disease, just hanging around and thinking about normal stuff like normal people. (Cit. 3) I feel fine, but perhaps I am sick in this way not noticing it. (Cit. 4) It is emblematic of this comprehensiveness that in the diary en-tries a member of the community may rethink the addiction and even impugn the whole idea of addiction as a disease. Later, however, thoughts of this kind are interpreted as a sign of the very disease. Likewise, normal (at least seen through outsider’s eyes) human emotions and feelings are in the diaries sometimes construed as symptoms of the disease. Addiction, then, is something which somehow stamps the whole identity, and it becomes a salient part of the Self. It is always there, whether or not one thinks about it. 3.

The Second Step: From “Junkie” to “Recovering Addict” I had no other alternative than to begin the treatment. I will not drive any more nails into my coffin. I want to live without all that shit. (Cit. 5)

There are just two possibilities: either one must continue the junkie life in the “field” or commit oneself to the rehabilitation program. This is how alternatives are presented in the diary entries. In short, in order to stay away from the drugs, one must transform from a junkie to a recovering addict. As said before, the first step towards this is acceptance of the disease of addiction. But it is at least as important is to reinterpret the aspects of the

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______________________________________________________________ former drug-using lifestyle. Constructing a new identity as a recovering addict demands that one must draw a distinction between the New Self and the former drug-using Self, one’s former life, and the whole circle of one’s earlier life. It is not, of course, surprising that in the diary entries there are many reminiscences. The inmates think back to the times they were in the “field” using drugs. Although there have been some bright sides, too, in their earlier life, it has mostly been a hard life, including many bad experiences. What is more interesting here is that the bright sides and the happy moments of the former drug-using life are now interpreted as false and downright delusive: It was a shock to me to realise in what kind of phoney world I’ve really been living in and what kind of values I had. … Now it’s totally different, real. (Cit. 6) I have a better feeling now than ever in the field, now my life is so real. (Cit. 7) The drug-using life and its values are now defined as distorted. From all of this one must break away and a new Self must be constructed, a Self which is able to live a normal life. However, a new Self is not constructed in solitude. Of course, identity is always shaped in social interaction, and it is shaped in the stories we tell about ourselves as well. It has been said that often the easiest way to answer the question “Who am I?” is to tell one’s life story. We usually structure our lives into the form of narratives that are consistent and sensible. In the Mikkeli Community, life stories are especially significant. One part of the treatment process there is to write a life story, that is, a narrative describing life before drugs (childhood, one’s family conditions and so on) and life during drug use. This “drugalogue” is then read before all the members of the community and, after the reading, the other members give feedback. Furthermore, the inmates also share their experiences in small groups and in the NA meetings. Thus, it is reasonable to say that the Mikkeli Community is a “narrative community” and that it can be approached from a narrative perspective. Julian Rappaport, for example, has proposed that AA and other mutual help groups could be reframed in terms of a narrative perspective.12 This, in its simplest form, “means understanding life to be experienced as a constructed story.” The stories that people tell and are told are forms of communication. The stories also order experience; they give coherence and meaning to events and provide a sense of history and of the future. In the Mikkeli Community, the starting point and a mutual foundation for the construction work stems from the perceived idea that

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______________________________________________________________ addiction is a disease. It also strongly defines the possible ways of understanding one’s life story and how it is understood in the community. Further-more, the disease concept of addiction is also the shared and collectively maintained core of the identity of the recovering addict. This new identity, however, has to be constantly worked out and strengthened. One way to do this is by a process which can be called levelling.13 This refers to the homogenisation of individuals. An inmate in the Mikkeli Community becomes convinced that there is a common thread between himself and the rest of the inmates in the community. They all share the common idea of the disease of addiction, and it is believed that the feelings surrounding addiction (self-pity, desperation, compulsivity and so on) transcend socio-political status, the types of drugs used, and the behaviours employed earlier in their drug-using life. Levelling can be seen as a necessity, given the various backgrounds of the inmates.14 I could speak freely [in the NA meeting], [...] and it felt good to share my story. I wasn’t ashamed and I didn’t feel different. I was one of us, a member. (Cit. 8) In the meeting there was a woman who spoke like it was me talking. I identified completely, I wept and trembled. (Cit. 9) Weakening individual differences among addicts knits the community together and, at the same time, distinguishes them from the nonaddict others, the “normies.” This, according to Adam Rafalovich, may be called reflecting, and it is concomitant with levelling. In the process of reflecting, the recovering addicts look toward other members of the community as a window into their own identity. The mutual construction of identity produces “otherness” in those who do not share the same (addict’s) identity. For instance, one of the inmates who had been outside the community in practical training wrote in his diary: I gave a lot of thought to what those other people think of me. Do I melt into the crowd or do I have a junkie’s stigma on my forehead? (Cit. 10) The non-addicts can never fully understand the social world and reality of addicts, but nor can an addict ever be exactly like the “normal people.” As Rafalovich has written, “Recovering from addiction means collectively seeing the foreign, unattainable normalcy of non-addicts.”15

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The Third Step: An Abnormality Within Normality “Do I have a junkie’s stigma on my forehead?” This question was asked by one of the inmates of the Mikkeli Community. We usually do categorise people based on different reasons. We may speak, for example, about teetotallers, recreational drug users, heavy users or – as often is the case – simply about “junkies.” This kind of categorisation is also one way to produce the social and moral organisation in the world around us. Furthermore, categories also produce social identities. A social identity is constructed when someone is set or when they set themselves into a certain category, and when there are certain expectations attached to this cat- gory. These expectations are culturally shared and usually so strong that we make assumptions and conclusions simply on the basis of the name of the category. For example, a “junkie” may be understood as one category and, as such, it is rather a strong, simple and unambiguous one. On the basis of this category we normally do not find it difficult to “know” what kind of people those in that category are and how they are going to behave and we usually almost instantly know how to relate to these people. We categorise each other, of course, everyday, which makes our social life and our interaction with others much easier. However, the other side of categorisation is that we, at the same time, have a tendency to lock up our expectations towards others: we do not know the person, but we have already decided, on the basis of categorisation, how to behave in relation to her. Preconceived ideas, especially when these are negative, may result in a stigmatised identity. At its worst a stigmatised identity becomes an “identity prison”: a person is placed into a certain category, and this categorisation is reproduced over and over again in different situations. The categorisation may be so strong that it rules out other possible, more positive or neutral, attitudes towards the person: A junkie is always a junkie, no matter what. Naturally, a “junkie” is a drug addict, and the word “junkie” is strongly stigmatising. However, even a “recovering addict” is still, by definition, a drug addict (according to the disease concept of addiction), but a recovering addict is also someone who can somehow control his or her addiction. In other words, the identity of a recovering addict is based, firstly, on the acceptance of addiction, and secondly, on the addiction as a disease being chronic and total. But at the same time, the aim is to “act normal” in relation to outsiders, in relation to “normies.” To be a junkie is a heavy label to wear, and even a “former junkie” is usually considered as stigmatising by the public at large. Thus, these recovering addicts are faced with a difficult contradiction: on the one hand, to be a recovering addict requires acceptance of one’s disease; on the other hand, social interaction and normality requires that this special kind of disease (addiction) is kept from outsiders (that is, from non-addicts). Furthermore, to internalise the identity of a recovering

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______________________________________________________________ addict is to accept that one is never going to be “an altogether normal person.” Thus, one “normality” is that of non-addicts, the so-called ordinary people, while another normality is that of recovering addicts, and there is an ongoing tension between the two. For recovering addicts, normality is something one must do; they must do to be ordinary. When placed in a certain stigmatising category, it is often difficult to assure others that one is just as normal and ordinary as anyone else. This problem may be crystallised in the (Goffmanian) sentence: “I am an everyman, but others see me in a different way.” This sentence, firstly, refers to the stigmatised identity, but, secondly, it also refers to one’s attempt to disconnect one’s own concept of self from the stigma produced by a certain category (i.e. a junkie, an alcoholic, a homeless and so on).16 This, as Erving Goffman puts it, may be called stigma management. According to Goffman, stigma management is a general feature of society. It is a process occurring wherever there are identity norms. “The same features are involved whether a major differentness is at question, of the kind traditionally defined as stigmatic, or a picayune differentness, of which the shamed person is ashamed to be ashamed.”17 Perhaps the extreme case of stigma management would be a total denial of one’s past, that is, a total disconnection from one’s own (drugusing) history and the present Self. In their research Robert Granfield and William Cloud noticed that the middle-class addicts who quit without treatment or self-help groups usually defined themselves through their current roles in society, and they rejected self-definitions that were related to their former addiction. As one of their interviewees said: “I am a father, a husband and a worker. This is how I see myself today. Being a drug addict was someone I was in the past. I’m over that and I don’t think about it anymore.”18 Clearly, compared with the ideas of the Mikkeli Community, this is a totally different way to handle one’s former substance abuse. However, whether one has adopted the identity of recovering addict, or one has decided to exclude one’s history with drugs, still, somehow, one has always to deal with his or her earlier life and the possible stigma that it carries. But, perhaps it is possible to turn the sentence above the other way around: “I am different, but others see me as an everyman.” When put in this way, it better describes the recovering addicts reflected in the empirical material used here. These drug addicts who do not see them-selves as fully normal people, as ordinary citizens, but who simulate normality and are then understood as normal by outsiders (or at least this is their goal). Interestingly, then, they do not understand their identity as stigmatised, but on the contrary, they define themselves positively as re-covering addicts:

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______________________________________________________________ I want to live in peace and I want to be a recovering addict. That’s my thing, and it’s a good thing, indeed. (Cit. 11) An interesting paradox becomes evident. Only a thin line lies between the misuse of substances and actual addiction; perhaps it is altogether invisible. However, the loss of control over drinking or drug use is often taken as a clear sign of dependence. In the cases in which a drinker or a drug user continues to use despite harmful consequences and he or she cannot stop this harmful behaviour despite trying to do so, we can use and we often do use the concept of addiction. An addict, then, to put it succinctly, is someone who has lost his or her control over intoxicants (and often over one’s life more generally, too). But on the other hand, here we have recovering addicts. The key point for them in order to govern and regulate their own life is, before all, to admit that they are addicts and accept their addiction. To accept addiction is the only way to control addiction – and to be a recovering addict. 5.

Conclusion: Normality and Health? Identity is never constructed in a void but instead through social interaction with others. It is almost inevitable that a serious illness some-how changes the individual. Michael Bury has written about biographical disruption. He argues that a chronic illness may be seen as a major kind of disruptive experience. The structures of everyday life and the forms of knowledge which underpin them have to be rethought. Also, the expectations and plans that individuals hold for the future must be re-examined.19 And, certainly, one must also re-examine his or her identity and relations to others. (At least in this respect, addiction is just one disease among many.) One’s identity is always individual as well as social. Everyone must establish a personal identity in the sense of biographical unity but al-so a social identity that secures a position among others. If one is defined as deviant – sick, alcoholic, drug addict, etc. – then usually he or she must “do to be ordinary,” one has to work to be normal. In fact, we must all per-form ourselves in everyday life and, as Erving Goffman has pointed out, people usually are what they appear to be. Is it, then, that to act normal is to be normal? The two sentences that I have earlier brought forward illustrate this problem of normality: “I am an everyman, but others see me in a different way” and “I am different, but others see me as an everyman.” In this article, I have described a very concrete transformation: from a junkie to a recovering addict. Addiction, here understood as a chronic disease, has been taken for the basis of the self; it is the basis of a new identity. This, of course, is also one of the main points of many critics. According to them, firstly, the addiction concept is too widely and loosely used. Stanton Peele, for example, has written about “the diseasing of

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______________________________________________________________ America.” In recent years, argues Peele, addiction concepts have expanded beyond alcohol and other drugs to cover a great variety of human behavioural problems.20 Secondly, the critics are worried about the con-sequences of the adaption of an addict identity. The problem is that when one’s identity is based on past addiction experiences, social interaction may be limited, and the new identity may be a deviant one.21 These critical views are indeed worth noticing. It is true that “addiction” has become something like an all-purpose concept: we can be addicted, it has been said, almost to anything.22 There is no unanimity on what addiction really is or if it is a disease at all, or even what kind of disease it is. In this paper I have relied on the addict’s own accounts. They define addiction as a disease, and this has been my starting point. Whether or not addiction really is a disease is another story. The disease concept of addiction is, however, connected with the second question of “deviant identity.” Namely, if addiction is understood as a disease, we may then ask, is it a normal disease? Is addiction a disease just like any other, say allergy, epilepsy, or cardiovascular diseases? If addiction is a normal disease, why, then, should it cause deviance? Is it not quite normal to have diseases? Or, more generally speaking, is disease al-ways something deviant, and is healthiness always normal? Or are some diseases more normal than others? We have a tendency to think in terms of dichotomies, that there are only two possibilities: either you are well or you are ill; there is healthiness and there is illness; this is normal and this is not normal. However, it may not be that simple. There is often a big grey area between, say, illness and health, and it is difficult to be sure. This grey area of sickness and health can be disclosed with a simple question: “When did your illness be-gin?” The question means, of course, that somehow we can mark an exact date: my illness started here, and before that date I was well. Unfortunately, there are many diseases that do not break out but rather creep up (just like addiction, for example), and it is in fact impossible to say when the whole thing really started. There is no on-off situation in the first place and no cut-off point for acting. Which again raises the question: is it then that to act normal is to be normal? Identity which is based on addiction is somewhere between sickness and health, between normality and abnormality. By recognition and acceptance of their disease, the inmates of the Mikkeli Community try to attain normalcy and the social definitions of normal life. However, this is not unambiguous. Normalcy (and health) seems to be never fully attainable. The very same thing which makes it possible for them to live a nor-mal life and to act normal – the acceptance of addiction as a disease – makes it impossible to be truly normal. Normality, then, becomes an aim and an ideal against which one considers his or her condition and behaviour.

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Notes 1

I Arminen, Therapeutic Interaction. A study of mutual help in the meeting of alcoholics anonymous. The Finnish Foundation of Alcohol Studies, vol. 45, Helsinki, 1998, p.15. 2 For example: C Cook, ‘The Minnesota Model in the Management of Drug and Alcohol Dependency: miracle, method or myth? Part I. The Philosophy and the Programme’, British Journal of Addiction 1988, pp. 625-634. 3 A Koski-Jännes, ‘Social and personal identity projects in the recovery from addictive behaviours’, Addiction Research & Theory, vol. 10, no. 2, 2002, pp. 183-202. 4 H Hoffmann, ‘Recovery careers of people in Alcoholics Anonymous: moral careers revisited’, Contemporary Drug Problems 30, Fall 2003, pp. 647-683. 5 A Rafalovich, ‘Keep coming back! Narcotics Anonymous narrative and recovering-addict identity’, Contemporary Drug Problems 26 (1999), pp. 131-157. 6 Mikkeli-Yhteisö. (9.5.2006). 7 E Goffman, Asylums. Essays on the social situation of Mental patients and other Inmates, Aldine, Chicago, 1961, p. 16. 8 Ibid. 9 A-L Hännikäinen-Uutela, Uudelleen juurtuneet. Yhteisökasvatus vaikeasti päihderiippuvaisten narkomaanien kuntoutuksessa, Jyväskylä University Studies in Education, Psychology and Social Research 252, Jyväskylä, 1999, pp. 133-142. 10 For example: R Room, ‘The cultural framing of addiction’, Janus Head 6, 2 (2003), pp. 221-234 and S Peele, The Meaning of Addiction. Compulsive experience and its interpretation, Lexington Books, Lexington, 1985. 11 R Room, op.cit., p. 225. 12 J Rappaport, ‘Narrative studies, personal stories, and identity transformation in the mutual help context’, The Journal of Applied Behavioural Science, vol. 29/2, June 1993, pp. 239-257. 13 See: A Rafalovich, 1999, pp. 140-144. 14 Ibid. 15 Ibid. 16 K Juhila, ‘Leimattu identiteetti ja vastapuhe’, in A Jokinen, L Huttunen & A Kulmala (eds), Puhua vastaan ja vaieta. Neuvottelu kulttuurisista marginaaleista, Gaudeamus, Helsinki, 2004, p. 25. 17 E Goffman, Stigma. Notes on the management of spoiled identity, Touchstone/Simon & Schuster, New York, 1986/1963, p. 130. 18 R Granfield and W Cloud, ‘The elephant that no one sees: Natural recovery among middle-class addicts’, Journal of Drug Issues, 26, 1996, p. 48.

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______________________________________________________________ 19

M Bury, ‘Chronic illness as biographical disruption,’ Sociology of Health and Illness 4, 1982, pp. 167-182. 20 S Peele, The diseasing of America: Addiction treatment out of control Lexington Books, Lexington, 1989. 21 R Granfield and W Cloud, op. cit. 22 A Giddens, ‘Living in a post-traditional society’, in Reflexive Modernization, by U Beck & A Giddens and S Lash, Polity Press, Cambridge, 1994.

Bibliography Arminen, I., Therapeutic Interaction. A study of mutual help in the meeting of alcoholics anonymous. The Finnish Foundation of Alcohol Studies, vol. 45, Helsinki, 1998. Bury, M., ‘Chronic illness as biographical disruption.’ Sociology of Health and Illness 4 (1982), pp. 167-182. Cook, C. C. H., ‘The Minnesota Model in the Management of Drug and Alcohol Dependency: miracle, method or myth? Part I. The Philosophy and the Programme.’ British Journal of Addiction 83 (1988), pp. 625-634. Giddens, A., ‘Living in a post-traditional society.’ In Reflexive Modernization, by Ulrich Beck, Anthony Giddens and Scott Lash., Polity Press, Cambridge, 1994. Goffman, E., The presentation of self in everyday life. Penguin Books, London, 1984/1958. Goffman, E.. Stigma. Notes on the management of spoiled identity. Touchstone/Simon & Schuster, New York, 1986/1963. Goffman, E., Asylums. Essays on the Social Situation of Mental patients and other Inmates. Aldine, Chicago, 1961. Granfield, R. & Cloud, W., ‘The elephant that no one sees: Natural recovery among middle-class addicts.’ Journal of Drug Issues, 26, 1996, pp. 45-61.

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______________________________________________________________ Hoffmann, H. C., ‘Recovery careers of people in Alcoholics Anonymous: moral careers revisited’, Contemporary Drug Problems 30, Fall 2003, pp. 647-683. Hännikäinen-Uutela, A-L., Uudelleen juurtuneet. Yhteisökasvatus vaikeasti päihderiippuvaisten narkomaanien kuntoutuksessa. Jyväskylä University Studies in Education, Psychology and Social Research 252, Jyväskylä, 1999. Juhila, K., ‘Leimattu identiteetti ja vastapuhe.’ In A Jokinen, L Huttunen &A Kulmala (eds), Puhua vastaan ja vaieta. Neuvottelu kulttuurisista marginaaleista, Gaudeamus, Helsinki, 2004, pp. 24-32. Mikkeli-Yhteisö. (9.5.2006). Peele, S., The Meaning of Addiction. Compulsive experience and its interpretation. Lexington Books, Lexington, 1985. Peele, S., The diseasing of America: Addiction treatment out of control. Lexington Books, Lexington, 1989. Rafalovich, A., ‘Keep coming back! Narcotics Anonymous narrative and recovering-addict identity.’ Contemporary Drug Problems 26, Spring 1999, pp. 131-157. Rappaport, J., ‘Narrative studies, personal stories, and identity transformation in the mutual help context.’ The Journal of Applied Behavioural Science, vol. 29, June 1993, pp. 239-256. Room, R., ‘The cultural framing of addiction.’ Janus Head vol. 6, 2003, pp. 221-234.

Note on Contributor Kimmo Saaristo, PhD, is a Senior Lecturer in the Department of Sociology, University of Helsinki, Finland.