Social Studies of Health, Illness and Disease Perspectives from the Social Sciences and Humanities
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 49 A volume in the Probing the Boundaries series ‘Making Sense of: Health, Illness and Disease’
Probing the Boundaries
Social Studies of Health, Illness and Disease Perspectives from the Social Sciences and Humanities
Edited by
Peter L. Twohig and Vera Kalitzkus
Amsterdam - New York, NY 2008
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: 978-90-420-2405-2 ©Editions Rodopi B.V., Amsterdam - New York, NY 2008 Printed in the Netherlands
Welcome to a Probing the Boundaries Project Social Studies 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: 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
Contents Introduction Vera Kalitzkus and Peter L. Twohig
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Part 1 Body, Self and Illness Shifting Views of Self: Impact of Chronic Illness Diagnosis on Young Emerging Adult Women Amy Rutstein-Riley Cancer and the Idea of the Self: Philosophy, Memoir and Medical Trauma Marlene Benjamin
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Part 2 Social and Cultural Context(s) Desirability and Its Discontents: Young People’s Responses to Media Images of Health, Beauty and Physical Perfection Joe Grixti
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Writing Size Zero: Figuring Anorexia in Contemporary World Literatures Isabelle Meuret
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Devils, Serpents, Zebras: Metaphors of Illness in Contemporary Swedish Literature on Eating Disorders Katarina Bernhardsson
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Part 3 The Ideal Body Writing Over the Illness: The Symbolic Representation of Albinism Charlotte Baker Genetics, Disability and Symbolic Harm Elisabeth Gedge Alcoholism: ‘Correction’ and the Changing Notions of ‘Recovery’ Donavan Rocher
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Part 4 Representing Pain: Interdisciplinary Perspectives Perceptions of Pain in Contemporary Zimbabwean Literature: Personal Public Narratives in Yvonne Vera’s The Stone Virgins Zoë Norridge Metaphors of Injury: Women Make Sense of Pelvic Pain Victoria M. Grace and Sara MacBride-Stewart
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Barriers to Talking About Chronic Pain: Insiders’ Views on Illness, Self and Responsibility 193 Stella Howden
Part 5 Perspectives on Donation Standardising Semen: Online Personalities and the Negotiation of Health Susan Rogers
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Media Treatment of Organ Donation: A Case Study in Switzerland Peter J. Schulz
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Introduction Vera Kalitzkus and Peter L. Twohig Health, as philosopher Hans-Georg Gadamer points out, is usually concealed. Although a healthy body provides a feeling of comfort and being-well and thus facilitates overall well-being, curiosity and a state of self-forgetting, it is the body in illness and suffering that obtrudes into our consciousness and makes one aware of what one has lost.1 Individuals do not always realize the importance of health for their sense of self and their life in the world. Nor are individuals always aware of hegemonic views and conceptions concerning the well body. However, when their once smooth functioning is disturbed or when their body no longer conforms to social norms, underlying social perceptions become clear. Although biomedicine plays a vital role in cultural perceptions of the body, the focus in this volume is on the lived experience of various bodily states and the interrelation between these states and broader social views of health, illness and disease. The focus of this volume thus differs from the previous ones in this series – it may also mark a line of discourse or discussion developing in this conference project that is now entering its sixth year. The present volume consists of four parts covering various aspects of this broad subject. The papers in the first part explore the interdependence between body, self and illness. According to sociologist Anthony Giddens, “[e]xperiencing the body is a way of cohering the self as an integrated whole, whereby the individual says ‘this is where I live.’”2 Thus the body is the basis of our being-in-the-world and our perception of self. Dramatic changes to the body threaten the processes of making sense of the self and may require re-definition, typically understood as a process of adaptation. The two papers in this part use the self as starting point. Amy Rutstein-Riley explores the impact of diagnosis on women’s self perception by giving voice to the experience of three women that were confronted with a diagnostic label during an illness episode that resulted in a transformative life event. The diagnosis attached to their health status touched the core of how they viewed themselves and their place in society as young, healthy women. In analyzing their narratives she shows the impact of relationships for these women to come to grips with the challenges faced by the threat to their former self. Rutstein-Riley identifies the impact of the diagnosis as “powerful, malleable, resistant and resilient.” Marlene Benjamin gives insight into her personal struggle of keeping a sense of self while being confronted with a serious diagnosis. Benjamin turned to analytical philosophy, her professional field, for support yet she found the classical philosophical thoughts wanting and instead came to question a kind of philosophy that remains silent about
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Introduction
personal experience. Instead, her personal experience became a lens through which both objective and subjective perspectives were brought into focus. Importantly, Benjamin also advocates for “the inclusion of female experience (and feminist philosophy) into the mainstreams of analytic philosophy.” Understanding the impact of the body on the self makes clear the importance of place, and of social and cultural context, on the experiences of health, illness and disease. When the journal Health and Place was launched in 2005, editor Graham Moon highlighted that the journal was interested in “how, why and whether place and context really matter when it comes to health and health care.”3 This interdependence is explored in the second part of the volume from various perspectives. Although local traditions and ideals of the body prevail, the papers draw our attention to the process of imposition of Western body ideals onto various societies. In his study on the responses of youth in Malta to media images of health, beauty and physical perfection, Joe Grixti looks at the desire of young people to comply with these images and the impact of these images one perceptions of the body and the self. Isabelle Meuret also explores the extension of body images, through her literary exploration of anorexia and eating disorders. Writing about anorexia – in her terms “Writing Size Zero” – she identifies as an empowering, healing as well as ethical endeavor. “By appending a message to their pathology,” she concludes, “the authors make sense of anorexia and participate in the creation of curative cultures,” thus turning “Writing Size Zero” into a true “gift of life.” Katarina Bernhardsson focuses on metaphors in Swedish writings on eating disorders, discovering that the use of “metaphors of powerful beings such as serpents or devils” prevail in labeling this illness. Although the narratives show traces of passivity and helplessness in the face of this powerful illness, Bernhardsson highlights how they also feature strength and power – the power of the narrator herself and the power of speaking to others. The papers in the first section illustrate the complex relationships that shape images of the body. The dissemination of Western values and lifesytles carries with it messages about the ideal body and inscribes bodies that do not comply or contest these normative ideals as the “other” or as “deviant” and, implicit in this inscription, in need of discipline. Papers in the third section explore such perspectives. Charlotte Baker traces the symbolic representation of albinism in novels from sub-Saharan Africa, showing how that disease is used by authors as well as in public discourse to express cultural and social fears. Elisabeth Gedge in her article looks at prenatal genetic diagnosis (PGD) and its impact on the status of persons with disabilities. “The potential for genetic testing and intervention to reinforce essentialised norms of health and humanity is significant,” she concludes. Her paper illustrates the careful balance that needs to be achieved among new technologies, individual freedoms,
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public policy and the public good and the reduction of harm or suffering. While there more attention has been paid to the subjective illness experience biomedical research continues to search for physiological explanations for health behaviours, situated in the biological body.4 Donavan Rocher explores the medicalisation of addiction through his explanation of alcoholism. New pharmaceuticals are developed to “‘correct’3 the genetic errors” that are now thought to be the basis for an ‘alcoholic identity.’ Rocher explores how these new scientific theories trickle down into the public discourse about alcoholism, which comes to be understood as a malfunction in the neurotransmitter system. Biomedicine has traditionally dominated theories of pain, placing emphasis on the neurophysiology and the transmission and reception of signals in the body. Yet pain is also a contested condition, one well suited to interdisciplinary explanations that pay attention to patient experiences. Pain, as Morris reminds us, is the product of “the intersection of bodies, minds and cultures.”5 The papers in the fourth section examine this interface, exploring the ways in which people make sense of pain. Zoë Norridge offers insights into the suffering of Zimbabwean women through the narratives of pain of two sisters in Yvonne Vera’s novel The Stone Virgins. Norridge compares the relationship between these fictional narratives and actual patient narratives, concluding that “the intimate descriptions and challenging aestheticisation of pain experiences encourage an ethical form of empathy that brings the pain experience back into our own personal worlds, albeit partially.” Ethically challenging aestheticisation can thus offer a path of coming closer to what it might mean to live with unforgettable pain, including that of the individual but also pain that is situated in history and in society. The secret power of words – aptly illustrated in the recent film “The Secret Lives of Words” by Isabel Coixet6 – renew our collective ability to empathise, rather than remaining numb to the suffering of others. Making sense of the pain experience is utterly crucial in cases where biomedicine is not able to provide satisfactory explanations. Victoria M. Grace and Sara MacBride-Stewart ask how women with chronic pain of “unexplained” character generate understanding of their experience. Analyzing the narratives of forty New Zealand women of European decent the authors find that the women use “visual images of the workings of the pelvic interior” to generate socially meaningful explanations of pain. They question the process of somatisation, of how personal as well as social conflicts and sufferings find their way into the bodies of these women. The final paper in this section, by Stella Howden, explores the phenomenon of pain in the clinical context of rheumatoid arthritis. Howden highlights the boundaries that envelop the pain experience and the ability to share that experience, which can impede the medical treatment of pain and result in feelings of estrangement for the sufferer. The desire of persons with chronic pain, she concludes, “to retain
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an image of ‘self’ as a non-complaining, non-pained individual, may all act to further isolate the person with pain.” Howden also highlights the important role of health care providers in creating a space in which the individual’s pain narrative can be articulated and validated. There is little doubt that new technologies in medicine and in communication are an important frontier to consider. The final section of this book brings these areas of research together, through an examination of the place of media and online communities in promoting donation of semen and organs for transplant, respectively. In her paper, Susan Rogers provides an analysis of the efforts to standardise semen, a process in which donors, doctors and recipients all actively participate. Peter Schulz examines the role of the media in Switzerland in promoting the issue of organ donation The papers in this volume provide a cross-section of the work presented at the fourth Making Sense of Health, Illness and Disease conference, which was held at Mansfield College, University of Oxford, in July 2005.7 The conference project which underpins this collection is intended to stimulate both further discussion and further research. To that end, many of the conference papers are available in electronic format on the web. This volume is also the fourth edited collection to emerge from the conference and, collectively, these volumes illustrate the breadth of scholarship that is shaping our understanding of health, illness and disease.8 It no longer seems tenable to narrowly interpret health, illness or disease. Rather, we continue to need perspectives from patients and providers, from biomedicine and from the social sciences and humanities.
Notes 1 “Es liegt ganz unzweifelhaft in der Lebendigkeit unserer Natur, daß die Bewußtheit sich von selbst zurückhält, so daß Gesundheit sich verbirgt. Trotz aller Verborgenheit kommt sie aber in einer Art Wohlgefühl zutage, und mehr noch darin, dass wir vor lauter Wohlgefühl unternehmungsfreudig, erkenntnisoffen und selbstvergessen sind und selbst Strapazen und Anstrengungen kaum spüren – das ist Gesundheit.” Hans-Georg Gadamer, Über die Verborgenheit der Gesundheit, Frankfurt a. M., Suhrkamp 1993), 143-144. 2 Anthony Giddens, Modernity and Self-Identity: Self and Society in the Late Modern Age (Stanford: Stanford University Press,1991). 3 Graham Moon, “(Re)placing Research on Health and Health Care,” Health and Place, 1,1 (1995): 1. 4 Arthur Kleinman, Writing at the Margin. Discourse Between Anthropology and Medicine (Berkeley: University of California Press, 1995). 5 David B. Morris, The Culture of Pain. Berkley: University of California Press, 1991.
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6 La vida secreta de las palabras, Spain 2005. In this movie Isabel Croixet also tries to find a way to put into words (of her actors) and pictures traumatic experience of guilt and torture. 7 The conference project began in July 2002. It has since been held each year at the University of Oxford, attracting delegates from around the world. Interested individuals can learn more about the conference and browse the archives at http://www.cybercultures.net/hidmain.htm 8 The previous volumes in the series are Peter L. Twohig and Vera Kalitzus, eds., Making Sense of Health, Illness and Disease (Amsterdam: Rodopi, 2004), Twohig and Kalitzkus, eds., Interdisciplinary Perspectives on Health, Illness and Disease (Amsterdam: Rodopi, 2004) and Kalitzkus and Twohig, eds., Bordering Biomedicine (Amsterdam: Rodopi, 2006).
Bibliography Gadamer, Hans-Georg. Über die Verborgenheit der Gesundheit. Frankfurt a. M., Suhrkamp 1993. Giddens, Anthony. Modernity and Self-Identity: Self and Society in the Late Modern Age. Stanford: Stanford University Press, 1991. Kalitzkus, Vera and Peter L. Twohig, eds. Bordering Biomedicine. Amsterdam: Rodopi, 2006. Kleinman, Arthur. Writing at the Margin. Discourse Between Anthropology and Medicine. Berkeley: University of California Press, 1995. Moon, Graham. “(Re)placing Research on Health and Health Care,” Health and Place, 1,1 (1995): 1-4. Morris, David B. The Culture of Pain. Berkley: University of California Press, 1991. Twohig, Peter L. and Vera Kalitzkus. Making Sense of Health, Illness and Disease. Amsterdam: Rodopi, 2004. Twohig, Peter L. and Vera Kalitzkus, Interdisciplinary Perspectives on Health, Illness and Disease. Amsterdam: Rodopi, 2004.
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Acknowledgments The editors would like to thank all of the conference participants and especially the authors who contributed to this volume for their patience, cooperation and understanding of our editorial demands. The collegiality and helpfulness that shaped this volume made the work enjoyable and helped us to meet our deadlines (for the most part). We gratefully acknowledge the work and inspiration of Dr Rob Fisher, who initiated 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 in Halifax, NS, Canada, and of Ashley Leopold, the student assistant on this project. Both provided invaluable assistance throughout this effort.
Part 1 Body, Self and Illness
Shifting Views of Self: Impact of Chronic Illness Diagnosis on Young Emerging Adult Women Amy Rutstein-Riley Abstract This paper explores the impact of illness experience and diagnosis (bipolar illness, depression, human papilloma virus – HPV, and chronic vulvar inflammation) on the developing identities of three emerging adult women, ages 18-24 years. Through a series of in-depth, open-ended and semi-structured interviews conducted over a period of eighteen months, Emma, Molly and Genevieve discuss developing views of self in relationship to health and illness, chronic illness diagnosis, and their interactions with the US health care system. Meanings ascribed to illness experiences and specifically, the impact of diagnosis on views of self, body image, health practices and resulting health decision-making and will be discussed. Situated in grounded theory, narrative inquiry, and qualitative feminist research methods, the final section of this paper discusses the importance of understanding the intersection between health, illness diagnosis, and developing views of self and the social, behavioural and psychological negotiations young emerging adult women undertake toward their pursuit of “healthy self” identities. Implications for the care of young emerging adult women in the context of their health care relationships underscores the importance of engaging in dialogue on the meanings women ascribe to a sense of a “healthy self” in the context of experiencing a chronic illness diagnosis. Enabling young women to voice their views of self, the transitions associated with a new illness diagnosis, and the impact of such experiences on their bodies and the private and public worlds they inhabit will allow clinicians to more fully communicate about and understand health beliefs, health practices, and health decisions in which young emerging adult women engage. Keywords: emerging adult women; illness narratives; identity and illness diagnosis, and meaning-making; relational theory In 2000, I began a study to explore how young “emerging adult”1 women with episodic illness make-meaning of illness events in their lives. Participants enrolled from college campuses and surrounding communities or networks, and self-identified as well women. Each participant had been engaged with the health care system for various health and illness concerns including migraine, biking injury, experience of stress, and
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viruses, among other health issues satisfying the enrolment criteria of episodic illness. Each participant was interviewed in-depth two to three times over a period of eighteen months. A feminist relational2 and narrative approach3 to the interview process combined with repeated and lengthy interview sessions afforded me a position in which I was privileged to hear deeply personal stories of illness experiences, and to begin to understand the impact of illness and diagnosis on the views of self for the women in this study. In this paper I share three stories of transformative life events, during which an illness episode receives a diagnostic label that alters the participants’ feelings and views of themselves. 1.
Genevieve Well into her first year of college, and engaged in a new romantic relationship, Genevieve began experiencing vaginal symptoms prompting a visit with her heath care provider. This visit resulted in a series of difficult health care encounters, tests with specialists and an ultimate diagnosis of chronic vulvar inflammation. This diagnosis was unbelievable to Genevieve because for her, the meaning of the diagnosis, “chronic vulvar inflammation of no discernable cause,” did not begin to match the pain and chronic suffering she experienced. From the moment of this initial diagnosis, Genevieve’s view of self was transformed. She was no longer a vibrant, sexually healthy young adult woman but rather a young adult woman with a diagnosis and series of vulvar symptoms of unexplained origin which left her in chronic discomfort, and emotional distress that spiralled into depression. The process of determining the cause of Genevieve’s symptoms took several months. Because the chronic pain she suffered was daily and intense, not being able to identify a cause of the symptoms led Genevieve to experience even greater emotional pain. The three words, “no discernable cause,” were more difficult to hear than the actual diagnosis itself. For Genevieve this led her to question her health and particularly her sexual health history. Regularly practicing “safe sex” she identifies one time when she and her partner chose not to do so. Genevieve believes this to be the cause and the turning point in her sexual health status, and in turn, a shift in her view of self as a healthy young woman to some “unknown” health status. Though initially relieved by the treatment recommendation of Genevieve’s primary care physician, a woman that she has a comfortable, honest relationship with, the symptoms continued to persist, prompting a referral to a gynaecologist with expertise in vaginal disorders. This first year of chronic vulvar inflammation was painful, distressing and difficult to treat. More difficult to handle was her lack of understanding of why she began to suffer with this problem. No explanatory model seemed to fit with her experience. The overall stress of this experience negatively
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impacted Genevieve’s relationship with her partner, who continued to be present and supportive despite a change in their sexual relationship. She also felt understood and supported by her primary care physician, with whom she was in constant connection and dialogue. However, Genevieve’s feelings of support and the emotional benefits she received through engagement in these relationships was seriously shaken by an encounter with a gynaecology specialist. During this encounter, she goes from care by a physician who understands and treats her with respect, to an encounter with a new physician that is physically and emotionally painful and traumatic. I'm really nervous and I went and I don’t think I had been to a gynaecologist before. He’s an old man, he might have been in his 70’s, he came into the room and he kind of asked me how old I was, asked me if I was sexually active, and I said yes. And I mean I could just have been paranoid, but I sensed disagreement with the fact that I was 20 and I was sexually active. Maybe I just attributed that to him and it wasn’t there, but so I'm lying on the table, and his nurse is in there with him. And he puts me in the stirrups, takes this vinegar solution and like rubs it all over, which I didn’t know at the time that that was supposed to, if you had genital warts, the vinegar would bring them out so you can see them if you can’t see them. Which burned and hurt like hell! I mean I was in pain to begin with. I start tearing up when he does that. He doesn’t say anything, doesn’t even like give me forewarning that he was going to do it, which is just wrong in general. And puts the speculum in, looks at me...he says ‘oh, it looks like you have herpes, to me.’ I haven’t really had any exposure, I've only had one sexual partner and he was a virgin. So he’s like, you have herpes, or it looks like herpes to me, that’s what he said. I can’t even believe that that still makes me mad years later. So I just start crying. Like, I'm like ‘what do you mean, I've only ...’ I was like ‘I've only had sex with one person,’ he’s like ‘I'm not interested in your sexual history.’ He’s got the camera on me so that I can see my vagina like in full screen. The nurse is standing there; she doesn’t even hold my hand or anything. Not that that’s her job or whatever, I'm just hysterical. He’s got the speculum
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Shifting Views of Self in, and he leaves the room, leaves the speculum in there, hanging. Just like, hanging there. And then comes back, takes it out, sits me down, we’re going to give you a blood test to test you for herpes. And I'm crying the whole time. I don’t even know what he said was the reason for the chronic vulvar inflammation. That didn’t seem to affect him, that’s the reason I was there, but now he’s decided I have herpes. So they lead me through the waiting room, crying hysterically. So my boyfriend’s sitting there and he sees me and I'm crying and he’s freaking out. I go and they take the blood, and it was just horrible. I was crying the whole time. I was initially so excited. I was so excited to go to see this guy. And then, it was a devastating experience, horrible.
The power of this painful health care event impacts Genevieve’s life in several ways. First and foremost, this event, which occurred four years earlier, is communicated in a manner reflective of vivid emotional impact as if it had happened last week. The details she recalls, from being wiped with vinegar, the hanging speculum, the picture of her vagina on the projection screen of the camera, and the nurse who did not hold her hand, communicate her fear, feelings of pain, aloneness, and shame. From the moment the encounter begins, she names an unsaid sense of being “less than” for being a sexually active 20-year old in the eyes of the physician. Genevieve’s carefully detailed telling of this traumatic health care encounter is evidence of the degree of impact it holds in her memory and makes visible the pain this specialist’s exam inflicts on her life. Genevieve experienced multiple layers of trauma during this health encounter: trauma associated with the physical exam; and trauma associated with a lack of respect, attention and care which could have enabled her to successfully see through the physical experience of the exam. A lack of relational connection or even a concern for her as a woman – one who was vulnerable during this encounter – clearly contributes to her fear and pain. Perhaps most startling is the lack of recognition for who she is as a person, as she attempted to share information about her romantic relationship, only to be told he is not interested in her sexual history. To only be treated as a physical body – treated with lack of attention to how this exam might feel and the invasive nature of the examination – can be viewed as a traumatic event and, when seen in this manner, it is logical that the impact of this health care encounter left her in an emotional crisis and questioning her status as a healthy emerging adult woman.
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Despite the power of this negative encounter, Genevieve’s resilience took over. She reached out to her mother and primary care physician in her attempt to undo the physical and psychological damage that had been done. By reaching for relational connection and support, she exerted control and agency over her body, not willing to accept a diagnosis of herpes as the reason for her chronic pain. The herpes diagnosis made in the context of her sexual health history was illogical to Genevieve, and she sought relational connections that could affirm her view and help her to reauthor this traumatic experience. Genevieve exerted resistance against this label, and though ultimately willing to accept the original diagnosis of chronic vulvar inflammation of no discernable cause, she was not willing to accept a diagnosis of herpes and its prognostic implications, including the potential for lifelong social stigma. Seeking health care and relational supports enabled her to discount the herpes diagnosis and to reframe this traumatic encounter. For Genevieve, the piece exerting the greatest impact upon her identity as a healthy young adult woman is a lack of understanding about why she developed chronic vulvar inflammation in the first place. The inability to know why, to be able to fully process this label, continues to impact Genevieve most specifically in the constant vigilant self monitoring view of her body, the sense that she always has to be examining her body, her feelings, her sexual practices, and the relationships she might choose to engage in the future. For Genevieve, not knowing is in fact more painful than the knowing. Partial knowledge leaves her with an uncertain view of self, with an uncertain sexual health future, offering only a limited structure into which she could assign meaning to this transformative life event. While not a life threatening illness, it certainly is threatening to her identity as a healthy young adult woman, to her identity as a sexually healthy and competent woman, and to her view of her body as something painful, not within her control, as separate from self, as something she struggles to understand. In the years since receiving this initial diagnosis, Genevieve has moved through many stages and emotional processes, including a “spiral of depression.” Though the amount and frequency of symptoms have lessened, she remains on the lookout for any symptom, which affects both her present and her future. Yet, perhaps even more influential was the ongoing role of supportive relationships. Her relationship with her mother became even closer as Genevieve let her mother into this part of her life and found a tremendous amount of support and advice to ease her through particularly difficult times. Her relationship with her boyfriend remained strong throughout this experience. The constant support and presence of these relationships in particular, aided by the care of her primary care physician, helped her to recoup some of the emotional losses associated with this experience and the impact of this fuzzy and potentially chronic
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diagnosis. In an attempt to fill in her partial knowledge of this diagnosis, Genevieve engaged in her self-as-researcher mode, and researched, read articles, web sites, and academic health literature to construct her own theory of why this event occurred. What supportive connections could not fill in and provide, Genevieve sought out and constructed. Making her way through the diagnosis, through pain, in the presence of supportive relationships, Genevieve was able to construct her own explanatory model which provides her with some semblance of closure and integration of this illness event into her developing identity. 2.
Molly Similar to Genevieve, Molly also experienced a diagnosis that transformed her view of self as a sexually healthy young adult woman. During the course of this study, Molly attended an exam with her primary care physician at the local university health centre. The encounter sets the stage for a cascade of events resulting in a diagnosis of human papilloma virus (HPV). The initial preliminary diagnosis was delivered over the phone, with little context, little information, and even less relational awareness to the needs of a young woman who just hours ago considered her most pressing health concern to be a diagnosis of overweight. In an era of increasing scientific and medical skill, what has happened to the art of communication? Where has relationship gone? For Molly, the news and its mode of delivery were too much. … she [primary care physician] leaves me this message at like 5:30, and her office hours are done at 5:30, she leaves me a message at like 5:28, and she’s like, ‘I’m just calling to let you know that I need to speak with your about your Pap smear.’ That’s it. No details, no like, ‘This isn’t an emergency’ like – you know, ‘I need to speak with you about your Pap smear.’ So I am like freaking out. I’m like, ‘Oh, my God; I’ve never had anything wrong with a Pap smear before.’ I call her back, office hours end, and then they’re like, ‘She won’t be in the office tomorrow.’ No one there could give me my records except for her. And finally, she ended up calling me the next – the day after she got back into the office and told me that I have moderate dysplasia on my cervix, so again she doesn’t know what I should do or anything. She had like no information about it. She just like gave me the medical terms that I like copy down, and then I called another doctor to figure out what was going on and she just told me to make an
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appointment with like an OB/GYN [obstetrician and gynaecologist], and just like left me with like this ‘moderate dysplasia’ word in my head. So she’s like fired, like I’m never going to see her again. Like I can’t believe – I don’t know, like she just – she got me really fired up. And that message was like the end of it. I mean I definitely was like – for an entire day, was like, ‘What is wrong with me?’ Like do I have an STD [sexually transmitted disease] that’s been like sitting around for a year and a half that I don’t know about? Like it could be so many things. Molly’s immediate reaction to this event moved her to begin the process of filling in some knowledge gaps and to seek out confirmation that she will be alright. Two important informal health relationships, who have been supportive to her in other ways over recent years, enable her to begin a process of taking action, of attempting to research and learn what she could, and to take seriously the urgency of following through with further testing and treatment despite the anxieties she felt about the impending process. This first relational response provided some measure of comfort but the immediate knowledge she attained was limited and relevant to specific diagnoses, of which there were many to choose from and each of which carried its own psychosocial and health implications. Having a preliminary label to assign to her situation was simultaneously helpful and harmful. It was helpful in that she had an initial explanatory model from which to ground this experience. However, the more Molly learned and the longer she had to wait to really know what was potentially wrong with her body, and particularly her cervix, the larger all possibilities became, intensifying within her. Her questions began spilling over, “what did I do wrong, I am so careful?” Molly is not involved in a sexually active relationship and has not been for quite some time. The process of making sense of this initial diagnosis did not neatly fit with Molly’s picture of herself, of her identity as a healthy, responsible, emerging adult woman. The combination of the diagnosis, its lack of connection or fit with Molly’s view of self, and the negative, disconnected manner in which the diagnosis was made, resulted in an experience of intense anxiety for Molly. Dealing with a new, revised view of herself without fully knowing or understanding the multiple potential meanings associated with this diagnosis were initially panic-producing, and left Molly feeling paralyzed, unable to move or respond to the information in a productive way. I went over every possible STD that exists and tried to figure out how it could possibly have lingered in my system for over a year and a half and me not
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Shifting Views of Self know. And I know that a lot of STDs can just go without like symptoms or whatever, so I was really panicking that like I have had an STD for a year and a half. I mean like dysplasia or anything like that didn’t even come to my mind; I was strictly thinking STD. And I was like, ‘I have an STD.’ And then I was just thinking, ‘This could be something I have to take antibiotics for and this could just ruin my sex life forever,’ like ‘who knows what this is?’ So I was pretty like bent out of shape the entire time thinking about it. And I was pissed that she left me the message. I mean she left a message right before she left for the day, knowing that she wouldn’t be there. So I was like really frustrated and just anxious about it. And then when I finally found out, it was like – you know, could you have waited to talk to me before leaving me that message, or could you have told me on my message, or told me that it wasn’t serious. I mean she just left this message like she wanted to talk to me about my Pap smear, said nothing about whether we were talking like HIV or like herpes, or dysplasia, just like no inclination, and I was really fired up about it.
Molly’s relational responses helped her initially to reframe the power of the information first shared by her primary care doctor. The supports provided a momentary respite from worry and anxiety. However, with the small bit of information revealed by the pap smear, her process of constructing meaning of this event, of trying to construct explanatory models which fit with her sexual health practices and history resulted in many possible story lines, none of which could bring her self back to the positive feelings about herself and her body that she had pre-moderate dysplasia diagnosis. Her meaning-making of this event led her down several explanatory paths, each which hung there, on hold, until further testing revealed more data for her to process and integrate with her identity. Molly and I had completed two significant and lengthy interviews over several months. At this point I viewed our researchparticipant relationship to be complete. One month after our last interview I received an email from Molly, suggesting we meet so that she could complete her diagnosis story. I was pleased that she wanted to share more with me about her experience. I also recognized that I had become an important partner in her meaning-making experience. Molly went for her initial pap smear because of her participation in this study. The interview sessions prompted her to think more actively about her health. During the
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difficult parts of her experience, I was present, open, interested, and offered a safe relational space for Molly to tell her story. The act of telling, of being asked about her thoughts and feelings about these events, provided a context for Molly to understand and construct meaning of this transformative episode. Molly’s view of herself in light of this diagnosis and potential prognosis was evolving, and my role as a researcher and observer, had been moved from a position of outside to inside, and placed me in the company of other important informal health relationships which provide support to Molly as she processes, constructs, and co-constructs meaning of this experience. In following through with the recommendations for further testing, Molly returned to the local University Health Service for a colposcopy and biopsy. Her experience was intensely frightening: “crazy, it was just crazy.” The physician performing the procedures was new to Molly and she experiences a certain degree of comfort mixed with equal parts of fear and anxiety as she approaches the start of the procedure. Prior to this appointment, Molly received several possible referrals, discussed at length with her mother the best location for the procedure and she engaged in several conversations with supportive informal health relationships. Throughout all of the talk, all of the relational support, no one had fully explained the reasons for this procedure, what it could potentially diagnosis and what the actual experience would be like. Molly’s description of the experience was sharp and dramatic: the procedure was, “Horrible, Horrendous. Traumatic.” [You should change the caps to italics, to add emphasis] Her story was filled with physical pain and fear. “The entire procedure hurt, it was painful, scary.” Up to this point Molly had relied on her close supportive peers and informal health relationships for information and confirmation that she is healthy. Engaging in research activities, assuming a self-as-researcher stance enabled her to acquire a certain level of self-awareness and technical understanding, despite an unclear focus on the range of possible diagnoses and prognoses implied by the initial label of dysplasia. Having a vague diagnostic label provided Molly with a window into the research, yet it also afforded her a boundary which she chose not to cross – because dyspalsia can mean many things, she chose to focus on the more typical, less harmful meanings of dysplasia, ultimately electing not to consider the potential implications of HPV. On the morning of this procedure Molly was accompanied by her friend Lisa, though Lisa was not allowed to enter the procedure room. Molly noted a lack of expertise on the part of the nurse: “when she was asked for different speculums she kept returning with the wrong sizes. The nurse and physician seemed to butt heads and be in each other’s way.” Distressed by their apparent communication difficulties Molly “insisted that the nurse leave the room.” At what seemed like mid-way through the procedure, “I asked the doctor to stop; I could only take about
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thirty more seconds of this. He responded by saying he had to take another biopsy.” Molly could not believe that he would not stop. She felt unheard, disrespected, and wondered whether he had an ethical obligation to stop as she had strongly asked. On some level Molly understood that he needed to continue and complete the exam. Like Genevieve, Molly felt unheard, her voice silenced, viewed as a physical body without feeling, without emotion. Her sense of control and autonomy were not recognized. This experience of invisibility layered further trauma on top of the physical trauma she endured during this painful exam, a painful exam she had not been appropriately prepared for. After the procedure was completed Molly asked about the current diagnosis, how it could be sexually transmitted, and how this would impact her future sexual health and sexual behaviour. After being informed that it was in fact HPV, Molly was told that she would need surgery to address it. Hearing that surgery was next, everything else she was told was lost, her mind went numb and she shut down. For Molly this next step layered on top of physical and emotional hurt and fear, an experience of trauma that was beyond acceptable limits. For two days following the procedure Molly hurt, “inside and out.” In days following the colposcopy and biopsy, armed with an actual official diagnosis of HPV, Molly devoted significant time to researching the label. Engaging in self-as-researcher in an effort to construct an understanding of her diagnosis, how she arrived at this place, and to find an explanatory frame in which to place her experience, she felt full. Her mind felt full, and by being full she could feel better. Fullness of ideas moved attention away from her cervix, away from her views about her sexual self, to a place of intellectual problem-solving. During the closing minutes of our third meeting, we discussed her plans for the surgery and what would make her most at ease in the face of this fearful event. We talked, kept talking, replaying her concerns, feelings, anxieties, fears, the experience of pain, never wanting to have sex again. Molly’s deeply personal comments reflect a disconnection from and fear of her own body. During our first interview Molly talked at length about being the only one in her social group not to have a boyfriend. Now the focus has shifted to will she ever be able to feel sexual and sexually healthy again? She no longer considered herself to be the same person – how did she arrive here? Her confusion is intense. How can she reauthor her understanding of herself in the midst of all this confusing information, in the midst of all these feelings; “everything was crazy, just crazy, insane.” At this point Molly has more unanswered questions, concerns, unaddressed fears and worries – about the present and the future, as well as the past. How did she get this? All these thoughts and emotions, and yet she had no immediate answers. Perhaps this is why Molly wanted to continue to meet with me, to tell her story in the context of my research.
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She said the minute she heard her diagnosis she needed to contact me. Molly reached out to me; as a product of participation in my study she felt connected to me, perhaps as researcher, but I suspect as something more, friend, woman, in her view an approachable authority figure who could perhaps answer and calm some of her fears and questions. She told me she also wanted me to know of her experience to inform my research. I think this may have helped her regain some of the power she felt she lost throughout this experience (though throwing a nurse out of the exam room took a good deal of power!). 3.
Emma Since moving to Massachusetts with her then boyfriend, Emma’s life has experienced many changes and transitions, including being on her own for the first time, residing across the country from all of her family and friends, becoming a college student, and working as a paraprofessional in a public school. Collectively, these changes represent positive developmental strides. However, interwoven with each of these advances have also been a series of health challenges, including a history of depressive episodes. Emma comes from a family of origin “rich in mental health issues” and a familial and cultural milieu which keeps silent health and illness concerns, most especially mental health challenges. Since coming to Massachusetts and following the break-up with her partner, Emma spiralled downward into an intense depression -- “I was very upset” -prompting her to seek mental health support near her home in Boston. It was during this time that Emma was diagnosed with Bipolar Depression. I went and talked to a counsellor. And I had had problems with depression before in the past but back home I always saw just my regular doctor. Nobody ever sent me to like a counsellor or a psychiatrist. Nobody have ever ... it was always just my regular doctor. ... but here, like they wouldn’t like, let that happen. I had to go see a social worker and a psychiatrist. So I went there and I spoke to them for a while and they ended up putting me on medicine and they diagnosed me, they said that I had bipolar illness. So they put me on medicine for that. And I think, you know, just knowing that that’s like what I had and that somebody said, okay, you know, this is what ... and I don’t know if I necessarily believe it now, and I have a hard time believing that that’s what I have. But I think knowing that that’s what I have helped me because I realized like okay, I'm doing this because I'm having a manic phase right now. And
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Shifting Views of Self when you can assign you know, like a name to it, and realize what it is, the behaviour, I think you really ... you know, you’re able to control it a little bit better and recognize that this is just a part of me. You know, and I'll get over it. And I think that’s helped, is knowing that that’s what it is.
This encounter serves as a dividing line in Emma’s understanding of herself. Prior to these health care encounters, Emma’s depressions were always treated by her primary care physician, who would treat her with commonly prescribed serotonin selective reuptake inhibitors (SSRIs), namely Zoloft and Celexa. Normally these would be appropriate treatment options for Emma, if depressed mood was her main diagnosis. However, following evaluations by mental health specialists, a new diagnosis emerges, one which has both the potential to offer her better, more appropriate treatment for her symptoms and which simultaneously causes her to question if this is who she is – a young woman with bipolar illness. Emma’s description of the experience of bipolar illness and her feelings and thoughts about the diagnosis were a response to a question I asked about any health care decisions she has made or has yet to make. For Emma, sharing her diagnosis of bipolar illness was a response to this question because she is actively in the process of coming to understand her self, reframe her identity, and determine whether or not she feels this diagnosis fits her view of self. This process could be defined as a process of coping or coming to terms with this diagnosis and what it implies, but for Emma, I think the process of fitting this diagnosis into her view of self, into her identity structure, is the health care decision she struggles with. “I don’t know if I necessarily believe it now, and I have a hard time believing that that’s what I have.” This is the main health decision she confronts, and this question impacts her view of self, her view of her family, her engagement in relationships, and her willingness to be fully authentic in the face of potential stigma she perceives to be associated with this diagnostic label. Emma’s conflict is clearly articulated. On the one hand having a label, a name to assign to her previously unnamed emotions and behaviours provides her with an explanatory model and a means for controlling and addressing them. However, on the other hand, the power and impact of the label in our contemporary culture, and more specifically, within the familial and cultural context from which she comes, makes this simultaneously very difficult to own. I'm in the process of deciding within myself whether or not I believe that I'm a manic depressive person. Because I think a lot of times a doctor can give you a label, cause that’s what it is. It’s basically a label. But
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if you don’t believe that you have that illness, then what good is that label going to do, and I have to make the decision whether or not this is my diagnosis, I have to take these pills and I'm going to have to take them for the rest of my life. You know, that to me ... that’s the biggest choice or decision that I have to make. I mean, not only like to say to believe in it myself, but all the other things that come along with that and all of the like, people and how they’re going to look at me differently. And how I would have to tell certain people that I have that problem. And I have to come to grips with that. And that to me is like one of the biggest decisions I could ever, ever have to make, health care wise. I have to decide whether or not I want to take medicine for the rest of my life. And I think that’s a decision, that I have to make, but I need to stick with it. Unlike most of the other participants in the study, Emma lacks many personal relationships, and although she has acquaintances, they are not people she would rely upon when in difficulty. Emma’s boyfriend lives in another east coast city, and much of this current life issue remains out of their relationship, beyond the realm of discussion and support. The meaning of this diagnosis, as viewed through the lens of relationship is particularly threatening for Emma. Her desire to be in relationship, to have friends upon whom she can rely in her life is a significant desire. Yet, her belief that others will not understand her diagnosis, and the powerful social stigma associated with the diagnosis of bipolar illness keeps her from sharing her authentic experience with those closest to her and from those she might develop relationships with in the future. This aspect of Emma’s life remains a source of disconnection, and likely makes processing this diagnosis more challenging, “this is more of an internal struggle.” Living with an internal struggle, and feeling Emma’s sense of shame and fear of social stigma as she works through the meaning of this diagnosis makes more salient the meaning of relationship in constructing a revised version of herself. Her experience of aloneness is so strong, and yet the mental health relationships which offer Emma this new diagnosis and new way of seeing herself do not seem to offer enough of a safe relational space in which she may speak out loud her deepest feelings and fears. One example of this issue is the way in which Emma keeps silent from her psychiatrist, who prescribes and manages her prescription of Depakote, the decisions she makes regarding medication adherence.
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Emma keeps feelings about her body image and weight which fuel her willingness to adhere to the medication or to skip doses when she experiences weight gain out of her relationship with the psychiatrist. This is of course a particularly important issue to address in the context of her health care relationship, yet for Emma, this intersecting set of issues about her body and body esteem influence and trump her decisions to remain “balanced and consistent.” Having important, active relationships, whether they be informal health relationships or health care provider relationships, in which Emma can authentically voice her needs, her feelings, and her challenges, is vitally important. Unfortunately, at the time of this study Emma did not experience relational safety in which to voice her realities. Emma does not feel safe to address her concerns about her body weight when adhering to her medication as prescribed, nor does her psychiatrist ask about it when evaluating her progress on the Depakote. Medication adherence is not a problem unique to Emma, but as she struggles with acceptance or integration of the bipolar diagnosis into her life structure, she misses parts of her old self which also cause breaks in her medication practices. Emma’s description of self pre- and postdiagnosis, which in turn means, pre- and post- medication usage, is reflected in the ways she is “no longer a risk taker, is more fearful, deadened” in her affective experience. Described in this way it seems quite plausible that adhering to a prescribed medication regimen would be challenging if not impossible. In An Unquiet Mind, Jamison4 similarly describes the constant challenges she faced around taking her prescribed treatment for bipolar disorder. For Emma, the lack of present supportive relationships to which she can turn for connection, warmth, and empathy in the face of her ongoing struggles makes this additional challenge more magnified. As Emma deals with the internal struggle to make a decision about her identity, she expresses her feelings about herself when on and when off medication. This is new territory for Emma – not the topic of her struggle – but the depth and openness with which she expresses self. The context of our research relationship has offered her a safe relational space to outwardly bring to voice deep concerns. In bringing them to voice, I was able to offer her questions to continue to prompt her self reflection and perhaps offer her space to construct some options of where she can go from her current position. It’s hard, because it’s almost like when I take my medicine I'm a different person. When I'm taking my medicine I feel so good and I think like I don’t need to take medicine, I'm fine. I'm a fine person. And if you ask me at that time I feel like I'm fine and there’s nothing wrong with me. If I have a good maybe like
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two or three weeks after I stop taking my medicine I'm fine. Like everything’s fine. And then all of a sudden I get depressed. And then everything’s not fine. And then I realize that I that there is something wrong with me and that I do have to start taking my medicine. But it’s something that I need to feel like its okay to be like that. And I need to make the decision that the diagnosis is probably right. And I think mental illnesses are the most hard to come to grips with because it’s not a concrete diagnosis. Whereas like usually when you go into the doctor’s you’re looking for the concrete diagnosis. And most of them, at least they come across as being concrete diagnoses, but in mental illness it’s not like that. So you need to come to grips and you need to make it concrete. The challenges Emma describes in making a decision, in fitting her experience into this diagnostic box, and in following the prescribed regimen for those with this label are a challenging process. The context of the research interview helped to make visible issues previously unsaid and invisible within the context of her health care relationships, in the context of her family, in the context of intimate relationships, and in the context of the social groups in which she would like to be a member. This conflict in the way she feels about herself and the images out-side herself about people with mental illness inform and contribute to her anxieties about being labelled, and about being known as someone with a label of mental illness. Being true and real then exists internally and in very few, limited social relationships. As Emma works through making meaning of her diagnosis and its impact on her identity and life, she does so disconnected from opportunities to grow, to learn effective coping and life management skills, and to remain optimally healthy. 4.
The mediating role of relationship The stories of illness and diagnosis in this paper can be connected by a thread of relationship. The diverse experiences of resistance, challenge, and integration of significant and painful illness labels into one’s developing identities can be viewed as remarkable in these young lives on the verge of adulthood. The lives of the young women in this study are in a position of transition and emergence. The impact of diagnosis may bear especially powerful weight as their long futures lie out in front of them. The impact of these diagnoses and respective prognoses has important implications for the way they treat themselves, the ways they engage with the health care system and the behavioural and health related decisions that they make. Yet the impact of diagnosis on the lives
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of the participants in this study powerfully shapes their views of self, and their developing identities as mature, capable, healthy women. The power of the way a diagnosis is delivered and the ways in which vulnerable bodies are treated, deserve the greatest degree of respect, relational attunement, and partnering, for the impact of these experiences reverberates at a core emotional, psychological and social level, impacting the ways in which they move through the environments in which they live5. These stories share a common theme: the impact of diagnosis is powerful, malleable, resistant and resilient. Authoring revised understandings of self and creating explanatory models about diagnosis occurs in the face of supportive as well as harmful relationships. Each woman proved strong, finding ways to move through these experiences, able to navigate through difficult illness and diagnosis events in an effort to find themselves. Engaging in self-as-researcher, Molly and Genevieve researched their diagnoses in an effort to understand, to regain control6 and create explanatory models which could fit with their views of self. The role of relationship with informal health relationships and health care providers is central to the meanings assigned to these diagnoses.7 For Molly and Genevieve, informal health relationships were essential for reauthoring the meaning of their illness diagnoses. While each rejected, partially accepted, or fully accepted their diagnoses, the powerful support of mother enabled them to process and regain strength and control in light of these challenging diagnoses. These stories of illness diagnosis reveal a process of coping rich in relational connection and support8, except for Emma’s story. Perhaps this is why Emma remains in a holding pattern regarding her diagnosis, struggling to make meaning of the bipolar diagnosis or integrate it into her identity. Kralik, Brown & Koch found in their study with women with chronic fatigue syndrome and fibromyalgia “[that they] felt vulnerable and lost as they tried to understand the meanings and consequences that their diagnoses held…”9 Emma, who was the most relationally isolated of the three women discussed in this paper, was stuck in an identity limbo, unsure of how to process and make meaning of the bipolar diagnosis, unable to revise her identity in recognition of it. The health care providers who make and communicate a diagnosis have the potential to shape in a positive or negative direction the ultimate meanings that are assigned to the diagnostic experience. It is not only the telling of a diagnosis and providing information about an illness label that is important. Even more vital to the telling is the context and quality of the relationship, its relational commitment and engagement, that can make possible a healthy identity transformation for young emerging adult women confronted with chronic illness diagnoses 10. These narratives have important implications for young adult women’s health care, as each participant in this study identified herself as
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a well woman. Despite the range of health and illness concerns shared and explored in the context of this study, each of the women moves throughout her social environments with this self-definition. In the context of health care encounters, it is therefore incumbent on physicians and other clinicians to work to ‘unpack’ what it means to be a ‘well young adult woman’ so that many important psychosocial and health concerns can be voiced, named, and potentially intervened upon. Central to engaging young adult women about their dominant health and illness concerns is relationship, and the manner in which relationship is invited and nurtured with emerging adult women in health care encounters can make important dialogue and potential interventions possible. Health care providers should partner with their young adult women clients to construct collaborative understandings of those health issues most important to emerging adult women. This can more likely happen in the context of narrative approaches to interviewing,11 which build on relational skills, deep listening, and empowering the patient to guide the health care agenda.12 For the study participants dealing with illness diagnoses, the impact of the health care relationship in conjunction with informal health relationships were especially important to the ways they responded to an illness diagnosis and whether the meanings associated with the diagnosis would be rejected, or partially or fully accepted. The presence of supportive connections played a significant role in the way meanings were constructed in the context of these events. Informal health relationships serve many functions, and are a primary health resource for emerging adult women. The value of these relationships in the care of emerging adult women should be recognized by health care providers for the role they contribute to health decisionmaking, to the co-construction of health knowledge,13 and to the enactment of health promoting or defeating health behaviour.
Notes 1 Jeffrey Arnett, “Emerging Adulthood. A Theory of Development from the Late Teens through the Twenties.” American Psychologist 55 (2000): 469-480. 2 Shulamit Reinharz, Feminist Methods in Social Research (New York: Oxford University Press, 1992); Jean Baker Miller & Irene Stiver, The Healing Connection: How Women Form Relationships in Therapy and in Life. (Boston: Beacon Press, 1997) ;Lucy Candib, “Self-In-Relation Theory: Implications for Women’s Health.” In Reframing Women’s Health - Multidisciplinary Research and Practice edited by Alice Dan, 67-78, (Thousand Oaks: Sage Publications, 1994).
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3 Trisha Greenhalgh, “Narrative Based Medicine in an Evidence Based World.” British Medical Journal 318 (1999): 323-326; Rita Charon, “Narrative Medicine: Form, Function, and Ethics.” Annals of Internal Medicine 134 (2001): 83-87. 4 Kay R. Jamison, An Unquiet Mind. (New York: Random House, 1996). 5 Amy Rutstein-Riley, “Through the Lens of Relationship: Young Adult Women Make Meaning of Health and Illness” (Ph.D. diss., Lesley University, 2005). 6 Pia Asbring. & Anna-Liisa Narvanen, “Patient Power and Control: A Study of Women with Uncertain Illness Trajectories.” Qualitative Health Research 14 (2004): 226-240. 7 Pia Asbring, “Chronic Illness – A Disruption in Life: IdentityTransformation among Women with Chronic Fatigue Syndrome and Fibromyalgia.” Journal of Advanced Nursing 34 (2001): 312-319; Elizabeth Banister & Rita Schreiber, “Young Women’s Health Concerns: Revealing Paradox.” Health Care for Women International 22 (2001): 633-647. 8 Miller & Stiver. 9 Debbie Kralik, Maria Brown & Tina Koch, “Women’s Experiences of ‘Being Diagnosed’ With a Long-Term Illness.” Journal of Advanced Nursing 33 (2001): 600. 10 Cathy Charles & Christine Barry, “Patients’ Unvoiced Agendas in General Practice Consultations: Qualitative Study.” British Medical Journal 320 (2000): 1246-1260; Paul Haidet & Debora Paterniti,“Building” A History Rather Than “Taking” One. A Perspective on Information Sharing During the Medical Interview.” Archives of Internal Medicine 163 (2003): 1134-1140; Kristi Malterud, “Strategies for Empowering Women’s Voices in the Medical Culture.” Health Care for Women International 14 (1993): 365-373. 11 Charon, 83-87; Eliot Mishler, The Discourse of Medicine. Dialectics of Medical Interviews. (Norwood, NJ: Ablex Publishing Corporation, 1984). 12 Haidet & Paterniti, 1134-1140; Frederic Platt, et al, “Tell Me About Yourself”: The Patient-Centered Interview.” Annals of Internal Medicine 134 (2001):1079-1085. 13 Lisa Schilling, et al, “The Third Person in The Room: Frequency, Role, and Influence of Companions During Primary Care Medical Encounters.” The Journal of Family Practice 51 (2002): 685-690.
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Bibliography Arnett, Jeffrey J. “Emerging Adulthood. A Theory of Development from the Late Teens through the Twenties.” American Psychologist 55 (2000): 469-480. Asbring, Pia & Narvanen, Anna-Liisa. “Patient Power and Control: A Study of Women with Uncertain Illness Trajectories.” Qualitative Health Research 14 (2004): 226-240. Asbring, Pia. “Chronic Illness – A Disruption in Life: IdentityTransformation among Women with Chronic Fatigue Syndrome and Fibromyalgia.” Journal of Advanced Nursing 34 (2001): 312-319. Banister, Elizabeth. & Schreiber, Rita. “Young Women’s Health Concerns: Revealing Paradox.” Health Care for Women International 22 (2001): 633-647. Candib, Lucy M. “Self-In-Relation Theory: Implications for Women’s Health.” In Reframing Women’s Health - Multidisciplinary Research and Practice edited by Alice Dan, 67-78. Thousand Oaks: Sage Publications, (1994). Charles, Cathy & Barry, Christine. “Patients’ Unvoiced Agendas in General Practice Consultations: Qualitative Study.” British Medical Journal 320 (2000): 1246-1260. Charon, Rita. “Narrative Medicine: Form, Function, and Ethics.” Annals of Internal Medicine 134 (2001): 83-87. Greenhalgh, Trisha. “Narrative Based Medicine in an Evidence Based World.” British Medical Journal 318 (1999): 323-326. Haidet, Paul & Paterniti, Debora. “Building” A History Rather Than “Taking” One. A Perspective on Information Sharing During the Medical Interview.” Archives of Internal Medicine 163 (2003): 1134-1140. Jamison, Kay R. An Unquiet Mind. NY: Random House, (1996). Kralik, Debbie, Brown, Maria & Koch, Tina. “Women’s Experiences of ‘Being Diagnosed’ With a Long-Term Illness.” Journal of Advanced Nursing 33 (2001): 594-602.
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Malterud, Kristi. “Strategies for empowering women’s voices in the medical culture.” Health Care for Women International 14 (1993): 365373. Miller, Jean Baker & Stiver, Irene P. The Healing Connection: How Women Form Relationships in Therapy and in Life. Boston: Beacon Press, (1997). Mishler, Eliot G. The Discourse of Medicine. Dialectics of Medical Interviews. Norwood, NJ: Ablex Publishing Corporation, (1984). Platt, Frederic, et al. “Tell Me About Yourself”: The Patient-Centered Interview.” Annals of Internal Medicine 134 (2001):1079-1085. Reinharz, Shulamit. Feminist Methods in Social Research. New York: Oxford University Press, (1992). Rutstein-Riley, Amy E. “Through the Lens of Relationship: Young Adult Women Make Meaning of Health and Illness.” Ph.D. diss., Lesley University, 2005. Schilling, Lisa, et al. “The Third Person in the Room: Frequency, Role, and Influence of Companions During Primary Care Medical Encounters.” The Journal of Family Practice 51 (2002): 685-690.
Note on Contributor Amy Rutstein-Riley is an Assistant Professor in the Professional Studies Division of Lesley College, the undergraduate division of Lesley University in Cambridge Massachusetts, USA. She teaches in the areas of sociology, women’s studies, psychology, and health.
Cancer and the Idea of the Self: Philosophy, Memoir, and Medical Trauma Marlene Benjamin Abstract Recent work in mind theory utilizes the distinction between objective and subjective viewpoints to gain insight into how the self operates in the world. This distinction is often criticized on the ground that it posits a metaphysical monster constructed along logically insupportable Cartesian lines. But the experience of cancer offers an illuminating philosophical tool for thinking about the relation between objective and subjective perspectives on the same thing. Experience used quite self-consciously as a philosophical tool, however, demands a dismantling and subsequent reassemblage of the commonly received notions of just what constitutes analytic philosophy. In particular, and most obviously, the traditional formal structure of analytic philosophy impedes the very exploration it aims at. Experience (here, specifically female, yet with implications reaching beyond gender) forces the abandonment of all traditional references to the literature. Instead, I combine some of the methodology of analytic philosophy with the descriptions of first-person narrative in an attempt to discover why the objective/subjective distinction makes sense, despite its Cartesian structural flaws. The essay’s personal narrative form is itself an invitation to further explore what the failure of traditional philosophy to accommodate the experience of cancer may import for the inclusion of female experience (and feminist philosophy) into the mainstreams of analytic philosophy. Keywords: cancer, self, analytic philosophy 1.
Context, History, and Time I have been trying for a long time to write a book on philosophy, trauma, and narrative. More precisely, I have been trying to write a book on philosophy and trauma from inside first-person narrative. In fact, I am embodied evidence of the compulsively philosophical turn of thought, obsessively interested in the relationship between philosophy, trauma, and first-person narrative, interested in a relationship whose ontology, whose metaphysical existence, came to me by way of an embodied autobiographical fact. Such facts are not everything. They do not “speak for themselves.” Embodied facts, like all facts, are empty on their own, and require meaning if we are to understand their import in our lives. But meaning is constructed, the result of the reflective powers of our minds. Here is where facts are put to use, where they serve as objects of
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interpretation, but also, if viewed from the right perspective, as particularly rich means of interpretation. My philosophical interests and voice changed in a most radical way in 1987. But not until 2003 did I find a companion voice for my project in the works of Stanley Cavell. It happened like this: On the final day of the 2003 NEH Summer Institute on “Ralph Waldo Emerson at 200: Literature, Philosophy, Democracy,” Stanley Cavell - like a stand-up comic throwing away the best line of his act - said “Philosophy is like a terrorist regime; it’s very costly.” In wondering “if there are possibilities for writing philosophy now that are different from the alternatives currently available”, I heard in his speculations a confirmation that my own halting work was actually an answer to that question, that there are such ways, and that I had been muddling along in one of them for far too long on my own. After the Institute, I discovered A PITCH OF PHILOSOPHY: Autobiographical Exercises, in which Cavell says, “there is an internal connection between philosophy and autobiography, that each is a dimension of the other… that there are events of a life that turn its dedication toward philosophy,”1 and in which he speaks about some of those events in his own life. This was breathtaking, like news from the front. I had always read philosophers who use what Cavell and Emerson famously call “the low” and “the ordinary” - the details of daily life - as a spring board for philosophical exploration. After all, examples from everyday life are common fare in moral philosophy books, the books with which I spent most of my time. But until I read A PITCH OF PHILOSOPHY, I found no philosophers who used the ordinary details of their own daily lives toward such an end.2 Unusually, Cavell does this in A PITCH OF PHILOSOPHY.3 Having finally discovered, in 2003, a companion voice explicitly interested in the ties between philosophy and autobiography, unashamedly saying to the world of traditional philosophy that something was amiss, I realized that the move forward in my own project required me to revisit the genesis of my own turn to philosophy. More accurately, I realized in 2003 that I needed to revisit the first event in my life that re-dedicated my life towards philosophy, but towards a philosophy I had, in 1987, to make up out of whole cloth, because my prior education in its content and its ways was entirely bereft of what I now understood to be philosophy’s central features and crucially important methods. And so, from Cancer And The Idea Of The Self,4 this is how it went.
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The Main Event Samuel Johnson once observed, “The prospect of death wonderfully concentrates the mind.” This is often quoted with the selfsatisfied conviction of those who have found a pure and simple truth. The conviction is misplaced. The prospect doesn’t always concentrate the mind; in fact, there are certain prerequisite conditions. To be fair, Dr. Johnson knew that two of these are more necessary than others. There must be some pressure of immediacy in the prospect, and there must be some clarity about the nature of the death whose prospect is faced. In the absence of these conditions, the prospect of death wonderfully concentrates the mind only when the mind that contemplates the prospect is made of heroic stuff; or, mundanely, somehow disposed to maintain a cool and analytic position toward the self that is engaged in contemplation. My own experience has been a sort of “thickening” of the brain, temporary but recurring, and unfailingly predictable: facing my doctors, half-undressed, I go stupid. To concentrate my mind, a piece of selfconsciously willed effort is required, part of which entails mulling over why this fact is itself true. Of course, this is where, in my case, the prospect’s lack of clarity comes into play. Unlike some other women with breast cancer, in my case, my doctors say, the prospect of death is not high on the probability charts. This has to do with statistics. Women with early stage breast cancer and non-involved lymph nodes are in “the best possible statistical profile.” Statistics persuade people. In certain moods, from certain vantage points, they persuade me. Or rather, some part of my self is persuaded. Call this the “objective” self, who allies herself with her doctors and acknowledges empirical data as possessing some sort of predictive power. In this mood, with this angle of vision, it is enough to repeat to myself the litany of empiricism and scientific method I have learned from my doctors: “There is a very strong likelihood that the lumpectomy and the radiation were curative; but if these procedures have missed some freefloating sub-microscopic cells, the systemic hormone therapy will likely do the trick.” This is as far as my doctors will go. The objective self is satisfied. But there is another self in all of this, a self who takes no comfort from the data. This self resonates to a fact that the objective self is not much troubled by: according to current medical research, my doctors cannot say that I won’t confound the data; that I won’t number among the small percentage of women who, even while being in the best statistical profile, will nevertheless suffer a recurrence of the disease. Call this the “subjective self”, who lives her life from the inside, for whom “the best possible statistical profile” means nothing, an incomprehensible phrase in an impenetrable foreign language. In this mood, with this angle of vision, the litany of empiricism and scientific method fails not only to persuade; it fails completely to account for the
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larger metaphysical question that asks how to reconcile - for my self that is (somehow) not split, but whole - objective and subjective perspectives on the experience of cancer. I wanted to shatter time and resurrect another, synergistic self. Waiting for the anaesthetic to take hold, astonished and still in a room full of green-cottoned doctors, reconciliation of perspectives wasn’t a problem. Fear and surprise wonderfully concentrated my mind. I want that clarity again. Without the fear or the surprise, I want to be that woman again. Several things are going on here. I can sketch only small pieces of the metaphysical landscape. Also, the language I employ is itself problematic. Still, common sense definitions are sufficient and appropriate. “Objective” means “seen from the outside,” an overview not limited to the viewpoint of any one person, but necessarily inclusive of many (perhaps all?) individual viewpoints or experiences. “Subjective” means “seen from the inside,” from the vantage point of one individual person, though not necessarily exclusive of objective perspectives, since these may be part of any given subjective point of view. So much - or almost - for prologue. This too: I doubt if the experience of cancer is anyone’s philosophical tool-of-choice for thinking about the relation between objective and subjective perspectives on the same thing. It certainly wasn’t mine. But I hate to let anything go to waste. Actually, the truth is different, or more. The truth is that I am compelled to avoid wastefulness, particularly when understanding is at stake, and even if at great psychological cost. There is a terrible tension here: the very thing I can’t let go to waste - the experience of cancer - is itself an impediment to its own preservation, both as the investigative tool of understanding, and as the experience to be understood. This is the problem. Reconciliation between objective and subjective perspectives - says one philosopher whose writings often persuade me - is particularly difficult, perhaps impossible, when the subject is the self. Nevertheless, the push toward reconciliation, I find, is especially powerful precisely when the subject is the self, and even in the face of what may be irremediably different conceptions of the same thing: the experience of cancer by a self capable of objective and subjective viewpoints. Of course, this doubly capable self may be a metaphysical monster, constructed along insupportable Cartesian lines, and which, therefore, and must logically be rejected. Rejecting what is logically insupportable appeals to me. I want things to be logical. Yet most days this doubly capable self makes (at least from the inside of this experience) an undeniable, exactly because it’s a schizophrenic, kind of sense. This is a philosophical Catch-22. The only way out is to chart more carefully the intellectual terrain of the experience. Yet I am hindered in that exploration by an emotional paralysis of a sort I can’t often get very close to. The first problem, then, is how to get close enough to the
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affective side of the experience to allow exploration, close enough without suffering the sort of paralysis that undoes the very thing it aims at. I wish for Daedelus, sculptor of enspirited statues and, behind Ariadne, architect of Theseus’ escape. Escape from this sort of labyrinth requires a philosophically unorthodox strategy, a different set of liberating methodologies. The usual philosophy article, full of technical language and buttressed by a footnote for every reference, must be avoided.5 I must do philosophy without the usual supports; must leave behind the highly codified structural requirements imposed by analytic philosophy. Yet this sort of release is problematic, in part due to the insufficiency of a procedure that can hardly claim the title of “methodology”. More is needed. Employing first-person narrative is the best way to go. Yet firstperson narrative - precisely because it allows intimate emotional proximity to the experience - very quickly shuts down the exploration it originally encourages. There is another danger. Without the powerful defences against affect supplied by the structural requirements of analytic philosophy, the project can degenerate into maudlin self-pity. Even worse, there can be a falseness about the whole enterprise: a use of the cancer explicitly claimed to aim at one thing, while actually (secretly?) aimed at another (such as getting people to think how good or brave or honest I am). A complex case of bad faith could be buried in all this. I am too familiar with my own temptations not to be worried by maudlin self-pity and bad faith. The trouble is, I have no choice. Think of my problem of the conflict between subjective and objective perspectives on the experience of cancer as a particularly intractable problem of cognitive dissonance. Its intractability centres in what may be the impossibility of harmonious reconciliation of the two perspectives when the subject is the self, combined with the unrelenting push toward reconciliation precisely because the subject is the self, and complicated by the fact that this is a subject capable of both perspectives. Formulated like this, the problem looks hard because it looks like a choice between one perspective and the other, both of which make a compelling, though mutually exclusive, kind of sense. The problem of reconciliation is actually worse than that. In this case, the problem is so difficult of solution because the two perspectives stand at the farthest reaches of a continuum, with an infinity of more-or-less/es in between. I can’t articulate any of those in-between spaces when it comes to my own experience. I am left with the crude, extreme positions, with the rough boundaries of what feel like mutually exclusive truths about my own existence and how I experience it. In centrally important ways, questions of perspectival reconciliation are probably similar in all cases of life-threatening diseases. But there are also crucial features of dissimilarity, and these deeply
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influence our sense of self. These features often involve the experience of the treatment appropriate to the disease: cancer is treated differently from kidney failure, and specific sorts of cancer are treated differently from one another. Still, certain kinds of treatment and examination are likely to raise certain questions in often predictable ways sooner (or later) than such questions may arise in other circumstances. The question of sex and death is a good example. I know something about this. For nearly three months on a daily basis, my treatment required (and always will require, though less frequently) striping naked and submitting to examination a part of my body normally only viewed and touched in moments of sexual intimacy. There is, and was from the start, something deeply odd about the vision of myself reflected back at me from the clinical perspective of my doctor’s gaze. Not just my continued existence is at stake in these examinations, but a sense of myself as viewed by others in this world I continue to inhabit. Breast cancer raises really messy questions about sex and death. To the extent that my sense of self is tied to a sense of my own sexuality, and to the extent that this is tied to a sense of myself as sexually desirable, the expressions on my doctors’ faces (all of whom are men), and the particular pressure of their hands on my skin, will contribute significantly to the way in which I conceive of myself. With an exquisite attentiveness, some doctors intuit all this. They know that a high-wire sort of doctoring, addressed to body and soul at once, is needed to dissolve the tension here, to allow the patient’s recovery as a whole person; to allow a full, and perhaps even richer, re-inhabitation of the body. Even so, this particular tension is expected to be dissolved according to widely accepted “civilized” rules. Nowadays, these include forthright declarations, by both patient and doctor, about the absence of disfigurement. In my experience, these mutual declarations fail to reconcile the objective experience: no gross alteration or disfigurement, but only some continued swelling and several long scars - with the subjective experience: continued swelling and several long scars. The emphasis is different, and this matters. One philosopher I have in mind would probably point out that I am grappling with issues best answered by Reductionism. The Reductionist View claims that my continued existence just involves physical and psychological continuity and no further, deep fact that really matters. On this view, “after a certain time, none of the experiences that will occur [after my death] will be related, in certain ways, to my present experiences”. This, he would say, does not matter all that much. Thus, while I may have doubts at some deep level, at the intellectual or reflective level the Reductionist View would convince me. This would ameliorate what I call the problem of double vision, and this would liberate me from the self
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and console me. He admits that others may not respond this way, but these are the psychological effects he experiences when he thinks hard about the arguments for Reductionism, and he is therefore glad that the Reductionist View is true. He is glad because the arguments remove “the glass wall between [him] and others”. I believe in philosophy as exorcism. Maybe this is wrong-headed, but it lets me carry on as if my puzzlement contains the possibility of fruitfulness, which is itself a kind of consolation. Thus, I wonder if the easy slide from talk about these “two perspectives” into talk about two “selves” who hold different perspectives is just a piece of sloppy thinking, the culprit behind that logically insupportable, split-ego, Cartesian monster. I wonder why I think, and sometimes dream, that my existence is an all-or- nothing thing, even after working through some science fiction, but logically conclusive, examples of brain surgery and cell replacement and tele-transportation, all of which prove that my existence cannot possibly be an all-or-nothing thing. And I wonder if this project is about to unravel because I am ever eager to fall back on the structural supports of analytic philosophy, which offer a comforting defense against the onslaught of my own emotions. All this gives me a headache. The frustration is that in concentrating my mind in an attempt to keep from going stupid, I go stupid anyway. I know what this is about. The fact that I have taken so long to get to the point is evidence of how hard it is to get close enough to the affective side of the experience of cancer to allow exploration. The point is just to reveal where this headache originally comes from by narrating its original genesis. This is that genesis: It is late January. Armed with my doctor’s lessons in statistics, I begin radiation. Statistics tell me that radiation combined with lumpectomy dramatically improves the long-term survival rate of women like me. Long-term survival is what I am after, and so for five days a week, over a period of six and one-half weeks, I go down to the hospital’s basement where the linear accelerators are housed. Five days a week, for six and one-half weeks, I undress from the waist up, put on a hospital gown, feel the low-level, continuous headache that began soon after surgery move up a few notches in intensity, and wait my turn on the machines. Like all rooms down here, the room I wait in is garishly lit from above. I think this is meant to compensate for the absence of windows. But without natural light, everyone looks ill down here; doctors and technicians, as well as patients, carry a kind of malarial-yellow tinge across the face. (I have a Polaroid photo of me in an examining room down here, naked from the waist up, half my chest swollen and red and blistered, my face yellow and surprised.) Still, some look worse than
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others, and too many - some with bodies grossly deformed - are obviously close to death. This makes me sick. Like my first day on the job, years ago, in an Oxford geriatric hospital, the smell of disinfectant and disintegrating flesh makes me cringe. And this, in its turn, makes me doubly sick, morally sick, for I want to be better than this, more gracious towards those worse off. Since December’s diagnosis, I have learned more about cancer than I ever wanted to know. I read about suffering as offering “the privilege of love and pain”. I dislike - and am wary of - this line of thinking, which reminds me of Oedipus, cleansed of his moral failures through his suffering and pain, made ready for his assumption by the Gods. Perhaps this really worked for the Greeks, but I require more mundane comforts. Only when I get the pattern down; when I know which doctors to expect on which days; when I know all the technicians by sight - even those who don’t take my case - only then do I feel some small flicker of generosity toward my fellow patients. But this is easily tried. There is something strange and awful about this place and these people. From my first day down here, I go into a kind of affective shock, hedging my heart round with whatever buffers I can invent. Much of this is automatic, but much is also willed: affective hibernation self-consciously chosen as a way to travel through time, my eyes fixed unblinkingly on a middle-distance future. At the same time, I am matchlessly aware of this place, in whose main characters I am helplessly, morbidly, interested. I survey my fellow patients as if any one of them might be a terrorist with secret knowledge of the bomb that is going to blow us all sky high. Meticulously, I catalogue their deformities: a man without a nose, whose face - though half-covered by a hospital mask - shrivels demonstrably over the time I am treated; a woman whose head and neck loll heavily to the left, grotesquely weighed down by a bulging tumour gone completely wild. Once, while changing clothes, I hear something that sounds like R2D2. Stepping out from the changing stall into the waiting room, I see a man projecting strangulated noises by holding a small instrument against his throat. Some days, the racket in my head is worse than others, and the low- level continuous buzz flares into a terrible, erratic pounding. But high or low, it’s always there. When it stops, about eight weeks after the end of radiation, I miss it for a bit, but am happy to have it gone. I think its going signals some psychic closure, some resolution of the problem of double vision. I was wrong. Eighteen months after the end of radiation, the problem of double vision is back. So is my headache. Headaches like this are a post-cancer addition to my life. I have noticed a pattern in my responses. Because all tests are done to check for metastatic disease, talk of “less” or “more fearful” is imprecise. Yet the less specific in results,
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while biologically non-invasive and incomparable in their procedural sophistication, are somehow even more terrible, both in anticipation and in response. Thus, the second Magnetic Resonance Imaging tests, done to track a process my haematology oncologist now says “doesn’t appear serious”, gave me a ringing headache before and after. The MRI doctor told my oncologist that he thought the test results showed cancer in my non-radiated breast. Reporting this to me, my doctor says, in support of his own assessment, that MRI tests are not used to diagnose breast cancer, and anyway we were tracking the “hot-spot” in my arm, which has diminished, and the one above my liver, which hasn’t changed. These, he says, are good signs. I know this is true, but it doesn’t do much for my headache. The truth isn’t always liberating. If I could believe the Reductionist View, I think that I, too, would find it liberating and consoling. The problem is that I can’t understand the arguments supporting Reductionism because I have a hard time breaking through the literal headache I get when trying to think about the arguments as applied to myself. The emotional proximity given by narration of my headache’s original genesis is a dubious gift. I’ve gone stupid again by trying not to. A friend says that watching me made her think that having had cancer is like living next door to a suspicious character: you lock your doors, your security system works, there’s no current reason to worry, but... you just never know. This captures some of the uncertainty. But even the uncertainty changes its shape, its content, and its feel. How can I explain the fact that tests and examinations - even when they are physically non-invasive hurt? How can I reject what some part of me knows is a logically insupportable Cartesian construction of the self, when some other part continues to feel as if some metaphysical connective tissue has been bruised and traumatized? The Reductionist View I want to believe says that what really matters about our own future is just physical and psychological continuity. There is no further, deep fact about our existence. Personal identity is mistakenly believed to be the further, deep fact that says what is true and important about our lives. But personal identity merely coincides with, and is not itself, what matters. On this version of the Reductionist View, it is possible to care less about one’s own death because “after a certain time, none of the experiences that will occur [after our death] will be related, in certain ways, to [our] present experiences. Can this matter all that much?” I want to say that this matters very little. I can’t. I think this is because there is something absent in the Reductionist account of what
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matters in our concern about our own future. It misses something important about the way in which personal identity is in part a conception of the self in relation to others. Not to other past or future selves, but to actual, different, other people. These relations are not just another way to talk about personal identity, which could then be claimed by Reductionists to merely coincide with what matters. Only if what matters in personal identity is radically independent of other people can such claims of coincidence be true and thus (possibly) dismissed. What matters? If there is some deep fact about our own existence, it is buried in our relationships, in the first instance with other people, but also, though perhaps less immediately, in all our relationships. What matters is the complex set of ways in which our sense of self is formed by what is mirrored back at us. The Reductionist View will leave unanswered doubts that arise on levels not reached by the logical powers of reflective and intellectual inquiry because important aspects of our relations are unaccountably beyond such powers. I cannot account for this, but the logical powers of reflective and intellectual inquiry cannot reach the roots of, and therefore cannot calm, my anxiety. (Perhaps someone else can account for this, but that misses the point). For part of my anxiety when I think about the possible results of some test or check-up has to do with how those close to me will respond. I imagine the worst: metastatic cancer, chemotherapy, death. I envision my funeral. I see a large crowd. Starting with those I love most, and who love me most, the scene is awash in tears. It is not enough to explain this as a piece of neurotic wishfulfilment: finally, people admit how much they love me. Of course, there is some of that, but there is more. The point is that my personal identity, though not fully dependent on, is yet complexly bound to the lives and sense of self of other people. This is not merely coincidental with what matters. The Reductionist account of what matters cannot explain why the absence, in my experience, of continued physical and psychological continuity - why future experiences not related to my current experiences in any meaningful way - should liberate me from the self and console me when the self is bound so closely with others. I will not be here, and the sadness I feel in anticipating the failure of my continued existence will not be connected to any future experience I will have. But the sadness I know now in anticipating and empathizing with the sadness and loss of the sense of self that others will feel later at the failure of my continued existence, at the absence in their experience of their sense of self which is, in part, connected to the reflection they see mirrored back at them from my eyes, is - even factoring in neurotic wishfulfilling explanations - anything but consoling.
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Perhaps this says nothing at all about the Reductionist View, and everything about my own double-visioned confusion, my own philosophical shortcomings. Even so, philosophy as exorcism has its limits.
3.
Context, History and Time Revisited: Why I Can’t Go Home Again Philosophy as exorcism has its limits, but so, then, does all human forms of inquiry. Above all else, this has been the only certain thing I have learned from my own inquiries. But this realization only began to take its hold on me somewhere in the middle of work on the larger project of which this essay turned out to be the self-surprising start6, when I found myself looking for ways of knowing on which I might rely with a surer confidence than I had, then, in analytic philosophy. A turn to the narratives of fiction was my first attempt at such a search, a natural turn because the narratives of literature had offered from childhood the consolations I would later find, then lose, and (though in a different form) find once again, in philosophy. But in sketching out a fictional narrative, in outlining a world with its inhabitants, and their mutual relations, and the landscapes in which they moved, I knew - and with as much certainty as I knew that analytic philosophy was not up to the task I had set it - that fictional narrative was also inadequate to the demands my understanding required. With as much astonishment as had followed my sudden apprehension about the failures of traditional philosophy, I realized that fictional narrative was equally, perhaps even more, dissatisfying in its shortcomings. For this recognition underscored the driving point behind my inquiry in the first place: I needed to find for myself a way to make philosophy more adequately responsive to my life, and despite my long, intimate, and entirely pleasurable association with fictional narratives, only by testing analytic philosophy against the daily details - the actual experiences - of my life would I have some chance of doing that. The disturbing feature of this realization was that doing so would demand a kind of bare-knuckle truth-telling about myself to myself with which I had, coincidently, only but recently come to see as having been further from my own intellectual ideas of its practice than I had previously liked to imagine.7 And these recognitions together explain why - in being invited by the editors to expand the paper I had presented at the 4th International Conference on Health, Illness, and Disease - is not the usual sort of expansion. Certainly, much more can be said about cancer as a philosophical tool of investigation. But my paper was self-consciously not an analytic argument, and self-consciously not a fictional narrative. The usual sort of expansion - which is to say, picking up the thread of the argument and following it out to some conclusion, however incomplete –
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would undo the very precepts on which it had been built. An expansion, we were instructed, should be “real”; should add some further considerations beyond those already expressed. Now these are appropriate requirements and proper guidelines for those lucky enough to be invited to do the work. Yet everything about Cancer and The Idea of The Self – its claims about identity and the force of personal narrative in extreme conditions; about the failure of analytic philosophy to adequately capture the experience of such conditions precisely because it is, by definition, distant, abstract, analytical – resists the sort of expansion I interpret the requirement to entail. For a large part of the grounds on which the essay stands are non-repeatable, and thus not amenable to the usual sort of expansion. Let me try to explain. The essay was written in an emotional and intellectual heat over 3 days in early 1989, thinking back on the events of the year before for the first time in a sustained way, and it is that heat that makes it – so far as it is – a demonstration of different two ways of knowing: not only a philosophical description of what the experience of cancer felt like, and not merely a first person narrative of the experience bereft of philosophical self reflection, and both at once. The kind of heat I mean can be encouraged by the proper attention, but it cannot be faithfully reproduced without some necessary preconditions: time enough to allow ones memories to take one where they will; fortitude enough to follow. But these conditions are not always available, which is probably why the sort of philosophy I am trying to articulate is not often done, and certainly why doing it takes far longer than the traditional kind of philosophical investigations. Expansion of the analytic examination of the experience can always be done, but that is because such examination, as with fictional narratives about such experiences, offer protective barriers against the onslaught of emotions. This is a different view of the philosophical Catch22 I raise in the essay. For while I have often been hindered in my explorations by an emotional paralysis of a sort I can’t often get very close to, it is also the case that relying exclusively on the abstract principles of analytic philosophy, and excluding entirely the first-person narratives of the experience that make it my experience, puts a barrier between me and my own lived life, which all the reflective philosophising in the world cannot bridge. Asked at the conference “why can’t you just let philosophy be what it is?” I half-jokingly responded that it is easier to change a lover than it is to change oneself. But I mean more than a joke, for falling in love with philosophy has been for me, as I imagine it is for most who are so seduced, a way to rise above the muck and the mess of daily life, a way to imagine a world more organized and more rational than it is, and in this way to spend time in a world far safer than it actually is. Perhaps, as the same audience member who posed the above question suggested, I should “just be happy with what philosophy does well”. Philosophy, I heard, isn’t
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meant to do what I want it to do.8 But I protested then, as I do now: what I want philosophy to do is exactly what it purports to do. Philosophy is designed to address the BIG QUESTIONS in life, is meant as a tool for digging up the meaning in our lives. And yet philosophy that resists the push any individual philosopher may want to make toward the common, the daily, the ordinary in our own lives as daily lived by us flies far from its mark, the more so when its technical language excludes all but the professionally trained philosopher from the conversation. There are, of course – to come full circle - some philosophies, and some philosophers, who embrace what Emerson and Wittgenstein call “the low, common, the ordinary” as jumping off points of inquiry. But few of them embrace these matters in their own lives as both subject and tools of philosophical exploration.9 It is not merely accidental, then, that Cavell, whose interests in Emerson and Wittgenstein go back many years, would turn pieces of his own experience into both subject and tools of philosophical investigation. At the same time, it is interesting that Cavell’s use of his own experiences in A Pitch of Philosophy as tools of such inquiry seem less dependant on the heat of memory than on the art of philosophy. Even unusual male philosophers may find it more difficult to give up in public, even momentarily, and even as they employ first person narrative, the safety of analytic thinking for the more tumultuous insights such narrative, sustained and set free from the confines of known principles and methods, can bring. But there are limits everywhere. Conference paper expansions have their limits; first person narratives have their limits. And philosophy as exorcism has its limits. But that is surely a good thing, because - as Wittgenstein says, and Cavell likes to point out - if I had a spade today, it would be turned, struck hard against the limits of language and our use of it, and we would need tomorrow to begin again.
Notes 1 Stanley Cavell, A Pitch of Philosphy (Cambridge, 1994), vii. 2 Only years after I wrote “Cancer and The Idea of The Self,” did I discover an essay by Iris Marion Young called “Pregnant Embodiment” in Donn Welton, ed., Body & Flesh (Oxford, 1998). In 1990 I read an essay by Martha Nussbaum that was striking in both its similarities to, and differences from, my own work and interests. (“Love and The Individual,” in Love’s Knowledge: Essays on Philosophy and Literature, Oxford, 1990.) In this essay, Nussbaum relies on a literary conceit to “integrate” personal experience and first person narrative with analytic philosophy. While such integration is nowhere stated as her intent, which is explicitly stated as the rather more straight forward academic aim of exploring some of the puzzles of love – of its “sameness” even as
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we love different individuals; of its differences when we do love different individuals yet find in them the very same attributes we found in previous lovers; of the strangeness of discovering evidence of another person so like herself that even the experiences of that woman’s loves seem to be written with the words and experiences from her own lexicon – it is the “elephant in the parlour”, the subtext of the exploration if not its actual text. But the conceit – which claims that Nussbaum (as the author of the essay we are reading) has discovered papers and articles written by another woman strikingly like herself -whose experiences and first person narration of them provoke the philosophical reflections and first person narrations of the author (Nussbaum). It is a wonderful essay, but does not do what I am here attempting, for the very conceit relied upon - of a character similar to the author – and juxtaposed to the analysis of philosophical investigation, keeps the author of the article we are reading separate from the experiences being documented, maintains a barrier between Nussbaum and the experiences she reports. Perhaps this is similar to the conundrum in which I found myself when writing this article, “Cancer and The Idea of The Self,” but there is no self-conscious recognition that such is the case, and that is, as far as my own work goes, central to the philosophical. Nussbaum does more straight-forward personal narration in a later book on the intelligence of the emotions, yet even here there feels as if a barrier remains between the person engaged in doing the philosophy and the experiences narrated by that person, despite explicit claims about the role played by such experiences and the emotions they evoke in our self-reflective lives. This is particularly true for me (though perhaps not for others) in her discussion of her mother’s death. In 1995, I wrote an essay about my own mother’s dying and death in 1993 (with this article, part of a book in progress), and used some of Nussbaum’s insights in her 1994 book The Therapy of Desire: Theory and Practice in Hellenistic Ethics (Princeton 1994), but later found the chapter on her mother in Upheavals of Thought: The Intelligence of Emotions (Cambridge, 2001) somehow at odds with the claims about experience and emotions made in The Therapy of Desire. But personal experience is often untranslatable, and this is not so much a criticism as an observation about the problems inherent in attempting to bridge the gap between analytical philosophy and literary narration. 3 It is interesting that even here there is less mention of his own body than might have been philosophically informative. There is the obvious, and wonderfully lyrical, metaphorical connections between his ear problems and his turn away from music and towards philosophy. Yet about the ear and its often unconsciously selective listening capacities, more could have been made, and made less euphemistically than Cavell does, particularly about the sexually self-reflective role that such capacity can,
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and apparently did, play in his life. But this is, as above with Nussbaum, more a remark about the problems inherent in attempting to bridge the gap between analytical philosophy and literary narration. It is also another point that may be worthy of deeper exploration, for it is part of the caricature that men (here, male philosophers) are less likely to actually locate (as much) meaning in their lived bodies as women do, who are far more quick to embark upon that road. This is a caricature, or a tendency, however, that warrants close attention. Cavell goes far in breaking this mould, yet does not fully reshape it into a usefully different interpretation. But such is the delight in reading him that feminists, especially, should find his even incomplete breaking of the male caricature mould all the more reason to study him with care. An excellent reading of Cavell’s relation to feminist philosophy is in Susan Field, “Emerson, Cavell, and Feminism” (forthcoming). 4 Cancer and The Idea of The Self, written in 1989, was recognized in 1990 with the highest category award in the Massachusetts Artists Foundation Awards. This recognition (and the $10,000.00 award) encouraged me to think there was something worth exploring here. 5 The general issues in which I am interested are raised in Thomas Nagel, The View from Nowhere (New York and Oxford, 1986) and in Derek Parfit, Reasons and Persons (Oxford, 1984). 6 The larger project is my book, The Catastrophic Self: Philosophy, Memoir, and Medical Trauma, forthcoming. 7 This coincidence had less to do with my first experience of cancer, as examined in Cancer and The Idea of The Self, than with other, and long accumulating, experiences of loss and disappointment. I neither claim nor believe that cancer, or any other catastrophic illness, is either the only or the best way to such realizations. 8 These questions and prodding’s came from two young philosophers fairly aghast that I should want to change the ground rules of the discipline that had nurtured me and which, it was implied, had proved itself sufficient to all the tasks they had ever set it. There is much to be said about this quarrel, a quarrel about which I am still in a quandary, which is why I spend so much time trying to suss out whose insufficiencies are really at issue: mine, or the discipline’s? I am grateful to both Stuart Oultram and to Iain Brassington for forcing again a point that deserves more considered attention that I was able to give under the time restraints, but which I return to again and again in the book that began with this essay. Their criticisms pointed me backward to my own training, and re-focused my attentions to just what it was in that training that led me to my first disenchantment with philosophy’s charms, and have thus helped me frame again the problem as I see it. 9 This is why Cavell feels so drawn to Emerson and Wittgenstein, and why I find in Cavell a friendly voice. Interestingly, it is why Emerson
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(and perhaps Wittgenstein, also) had interests in Eastern philosophy, whose stance toward such matters of daily life is sympathetic, as opposed to the stance Western philosophy takes toward such matters, always making of them catalysts for philosophical inquiry, but never tools of such inquiry. This is related to issues raised by Imre Bard about Western & Chinese medical and philosophical systems, claiming that, as two distinct methodologies, we can’t use the principles of one to judge the other. See http://www.inter-disciplinary.net/mso/hid/hid4/s3.htm for his online paper. At the conference, and in an exchange of emails, I have been arguing that this position is untenable. Neither of us have yet to fully persuade the other of our respective positions, but our exchanges have helped me think about my own attempt to combine, though not strictly analogous to the Eastern/Western division, two different sorts of inquiries in a fruitful way.
Bibliography Cavell, Stanley. The Claim of Reason: Wittgenstein, Scepticism, Morality, and Tragedy. New York: Oxford University Press, 1979. __________ A Pitch of Philosophy: Autobiographical Massachusetts: Harvard University Press, 1994.
Essays.
Emerson, R.W. The Essays of Ralph Waldo Emerson. Edited by Alfred R. Ferguson and Jean Ferguson Carr. Massachusetts: Harvard University Press, 1979. Nagel, Thomas. The View From Nowhere. New York: Oxford University Press, 1986. Nussbaum, Martha. Love’s Knowledge: Essays on Philosophy and Literature. New York: Oxford University Press, 1990. __________ The Therapy Of Desire: Theory and Practice in Hellenistic Ethics. Princeton, NJ: Princeton University Press, 1994. __________ Upheavals Of Thought: The Intelligence of Emotions. Cambridge: Cambridge University Press, 2001. Parfit, Derek. Reasons and Persons. Oxford: Clarendon Press, 1984. Wittgenstein, Ludwig Philosophical Investigations. 3rd ed., Translated by G.E.M. Anscombe. New York: MacMillan Publishing Co., Inc., 1958
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Young, Iris Marion. “Pregnant Embodiment,” in Body & Flesh. Edited by Donn Welton. Oxford: Blackwell Publishers, 1998.
Note on Contributor Marlene Benjamin’s interdisciplinary interests date from her undergraduate work in the “Great Books Program” at St. John’s College. Her Ph.D. is from Brandeis University. She has taught at Clark, UMASS/Boston, Harvard University’s Extension School, and at Richmond College in London. Benjamin is the recipient of numerous awards and honors, including a dissertation grant to work on the theoretical foundations of human rights claims, the highest category award in the Massachusetts Artists Foundation Fellowship Awards for her essay on philosophy, cancer, and the idea of the self, and an NEH Summer Institute Fellowship to study the writings of R.W. Emerson and his role as the first American philosopher. Her current project, The Catastrophic Self: Philosophy, Memoir, & Medical Trauma, examines three routes by which the self re-conceptualizes itself and operates in response to the embodied experience of catastrophic illness.
Part 2 Social and Cultural Context(s)
Desirability and Its Discontents: Young People’s Responses to Media Images of Health, Beauty and Physical Perfection Joe Grixti Abstract In contexts where the entertainment media focus on selling dreams of successful lifestyles linked to images of attractive young men and women disporting themselves in healthy abandon, those who do not fit these ‘norms’ often come to be seen, and also come to see themselves, as the other. This situation is particularly problematic for young people who suffer from physical disabilities, but it is also critical for those who think of themselves as too fat or too thin or not beautiful. The paper reports on data from focus group interviews with 195 young people (aged 14 to 25) and advertising agents living in Malta, and examines the extent to which attitudes to body image can be shown to be changing as a result of young people’s complex engagements with the media. The main focus is on how teenagers and young adults themselves speak about their own bodies and physical appearances, and how their self-worth and perceptions of others relate to recurring projections of desirability in the media. Advertisers’ views of what body images are appropriate for use in advertising are compared with young people’s changing perceptions of desirability. The paper suggests that though young people often resist and ridicule media stereotypes of physical perfection, their self-images are inevitably inflected by the commercial imperatives of the entertainment industries and advertising. Keywords: body image, advertising, media, youth, health, disability, physical perfection, Malta
1.
Preamble As is the case in other aspects of media influence on behaviour, ascertaining how media consumption may be affecting young people’s attitudes to body image is anything but clear-cut. However, there are strong indications that the value systems propagated through popular media images can have a profound influence on how young people perceive their own bodies and appearance, and on how they behave in relation to such perceptions.1 In this sense, media representations of desirable body images and lifestyles can be argued to play a key role in the formation of youth identities – particularly if, as Stuart Hall suggests, identity is approached as “a ‘production’, which is never complete, always
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in process, and always constituted within, not outside, representation,” and hence (in Judith Butler’s terms) “performatively constituted by the very expressions that are said to be its results.”2 This chapter explores how young people’s self-concepts and attitudes to body image are inflected by their exposure to commercially oriented and increasingly globalised media images. The aim is to develop a clearer understanding of how young people speak about their own bodies and physical appearances, and how their sense of who they are, their selfworth and their perceptions of others relate to recurring projections of desirability in the media. The arguments developed here draw on data from focus group interviews with 195 young people (aged 14 to 25) and a range of advertising agents living in Malta. These interviews formed part of two larger projects commissioned by Malta’s Broadcasting Authority in 1998-2000 and 2002-2004, which examined commercial media influences on youth identities in a post-colonial context.3 Follow-up interviews with a small sample of the young people interviewed in the original fieldwork, and geared more specifically to the writing of this chapter, were also held in Malta in October 2005. These more reflexive recent interviews focussed more directly on how these young people’s attitudes to body image may have changed during the three years since the original interviews, and they also explored how the young people themselves reacted to my interpretations of their earlier statements. 2.
Signs of the Times On a billboard at a busy intersection in Malta, a triptych of images advertises Versace soaps and body lotions. I saw this billboard while I was on my way to meet students at Malta’s Institute of Business and Commerce, and again when I was coming back from interviews with young factory workers. What struck me most was the positioning of the billboard and this particular poster. Standing prominently behind the billboard are a Catholic church and a monastery, while on the other side of the street facing it stands Malta’s only mosque and minaret. Towards the back of the Church and adjacent to the monastery there are also the remains of a prehistoric neolithic temple. A secondary school stands not far down the road, with the post-secondary College of Arts, Science and Technology beyond that. In the opposite direction lies the industrial estate, with its range of factories and production plants. An eye-catching symbol of global glamour and commercialised sexuality appeared here to have reached the gates of the centres of learning, labour, heritage, tradition and organised religion, and brazenly claimed a central position in their midst.
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Advertising billboard at busy traffic intersection (Photographed by the author, Malta, 30 May 2002)
In the first image on the advertising billboard, in stark shades of blue, a young blond woman and a dark haired young man tilt their heads and shoulders against each other as they lean up and forward from a reclining position, smiling broadly at whoever happens to glance at them from the busy street. What can be seen of their young and well-trimmed bodies indicates that they are totally naked, though their decency (as they used to say) is strategically protected by the angle of their postures and the positioning of their arms. Next to this image, in the centre of the triptych, is a picture of the young woman by herself. The dominant colour here is red, and the model is again looking straight at the viewer (through the camera), her arms partially covering her breasts, with one of her hands slightly touching her lips, as she sits cross-legged and naked behind three bottles of “Time for Pleasure” body products. The third image is in green. The couple are together again, but this time they are caught in an embrace, with his arms around her shoulder and back, their legs interlaced with each other. Here too they are naked, and here again they look straight at the viewer, but this time they are looking sultry rather than smiling. There is clearly nothing particularly technologically advanced or innovative in the messages projected by an advertising poster like this one. What is striking about it are the qualities it shares with the countless similar images which appear so frequently in the popular media: the technical virtuosity with which it has been posed, composed, and airbrushed; the eye-catching way it has packaged its banal equation of success and happiness with physical appearance and sexual attractiveness; its endorsement and propagation of stereotypical norms of enviable body
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shape, youthfulness, looks and sexual orientation. In this respect, as indeed is the case with most commercial media, the poster is selling more than a brand of soap and body lotions – it is selling a whole way of life. Judging by the ways in which many young people talk about themselves, their bodies and their relations to others, the sales pitch appears to be working. 3.
Advertising and ‘Beautiful People’ The advertising agents I interviewed in Malta spoke of their awareness and use of young people’s concern about image. At the same time, however, they were also insistent that in locally produced advertisements they usually use ‘ordinary’ people rather than professional models. One agent stressed that in her campaigns she chooses models who look healthy rather than seeming “unrealistically beautiful or unrealistically thin.” She pointed out that, in recent years, young Maltese people have become more concerned about their appearance, body weight, and physical fitness, and that this might well be one positive outcome of what they see in the media, particularly in the types of models used in advertising. I asked whether she would consider using somebody who is chubby or fat in an advertising campaign for a product not specifically related to body size or appearance (as in an advert for jewellery she had produced). Her answer, predictably perhaps, was no, and she saw this as a matter of promoting better health consciousness: Advertising Agent 1: The young couple in this advert are good looking, but not abnormally so. They’re not ‘supermodel’ types, and they’re not unrealistically thin either. I believe that an advert should portray an ideal situation, so ideally you’re healthy, you’ve got a good physique, even if you’re not particularly beautiful, but you know how to keep yourself well groomed. So for me that is the image that I should be giving with my advertising. If you’re healthy, you should be looking like that. When I put a similar question to two other advertising agents, they made it clear that for them it was more a matter of aesthetics and good sales technique rather than promoting better health consciousness: Advertising Agent 2: I wouldn’t use a chubby or fat person in an advertising campaign – not because it’s not healthy, I wouldn’t do that because it’s unattractive. You have to make an advert look as appealing as possible. Advertising Agent 3: In one particular campaign in which we aimed at young adults, the people we used
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were attractive, very attractive, but nothing that intimidated, nothing that made you feel: “Oh my God, I can’t go next to that crowd of people because I’m going to be inferior…” They were normal people, people anyone could relate to. In our local adverts, we very rarely use models or model agencies. We use well people. The specific campaign aimed at young adults referred to here involved what sounded like a relatively uncomplicated procedure: Advertising Agent 2: We got a local group of friends, who happen to be my group of friends, who happen to be quite a good looking bunch of people, and we just put them on a sofa in a nightclub, lit them up, and just told them to sit down and have a good time. We got a certain image, an image which was young, cool, trendy. We called them the beautiful people. These advertising agents did concede that advertising images imported from overseas might well be dominated by ‘supermodel types.’ They were also very much aware of criticism levelled against the waif-like looks which dominated many advertising campaigns in the 1990s. This awareness partly accounts for their repeated claim that the images they project as desirable are neither unattainable nor abnormal, and that (at least in the specific campaigns they described) it is ‘normal,’ ‘healthy’ and ‘non-intimidating’ body images that they are projecting as attractive ideals. Even though they are working within commercially oriented contexts, they insisted, their campaigns (or these specific local ones, anyway) are simply projecting ‘healthy’ images and thus making healthy looks (and lifestyles) desirable. Before examining how these recurring images of allegedly normal ‘beautiful people’ are perceived by young consumers themselves, I want to first consider whether the body shapes and body types projected by advertisers as most desirable are in fact as ‘normal’ and ‘healthy’ as they claim to be the case. 4.
Body-Shape Preference as Cultural Construct There is a great deal of historical and cross-cultural evidence which indicates that popular perceptions of what constitutes an aesthetically pleasing or healthy body shape vary dramatically across time and cultural contexts. Western notions of sexual attractiveness have been shown to have changed considerably over the centuries – with Rubens’ full female forms often cited as examples of an earlier period’s preference for body shapes which would today be popularly considered ‘unattractive’
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or even ‘unhealthy.’ During most of the nineteenth and early twentieth centuries, representations of sexual attractiveness were dominated by voluptuous and curvaceous female forms (characterised by generous bust and hips); and between 1400 and 1700, it was fat body shapes that were considered sexually appealing and fashionable – the ‘ideal woman’ tending to be portrayed as plump, big-breasted and maternal.4 The preference for slender, even skinny, female forms is very much a late twentieth century development, and an incremental and media-inspired one at that. Most quantifying content analyses of print, film and television body images since the 1950s show a growing alignment of beauty with thinness, so that “Playboy centrefold models, Miss America contestants, female television characters, and models in women’s magazines have all gotten thinner across time.”5 There is also considerable evidence that the cultural dominance of such ‘ideals’ of beauty and physical perfection have come to play a key role in the ways women and men perceive themselves and each other, even when the achievement of such ideals involves behaviour and habits which are anything but healthy. Many content analyses and questionnairestyle surveys conducted in the US and elsewhere stress that “the mass media present a narrowly defined body type ideal” and that “adolescents are particularly at risk for experiencing body dissatisfaction” because they “consume large quantities of media that emphasise these standards of attraction”.6 Similar patterns of dissatisfaction have also been found with pre-pubescent girls “whose devotion to fashion magazines leads them to compare their bodies with fashion models.”7 Surveys of women’s opinions about attractiveness over the past fifty years or so indicate a preference for body shapes that mimic the slenderness of dominant cultural icons, ironically at a time when average women (particularly in United States, where most of the studies were conducted) have become heavier. Studies conducted in Britain and the US also suggest that heterosexual women predominantly desire “to conform to a slim ideal, since this is regarded as the female body shape most admired and preferred by men,” and that they also tend to believe that men prefer much thinner body shapes than men themselves actually choose.8 Cross-cultural studies also indicate that sexual preferences are strongly inflected by cultural factors. One study found a marked difference in the female body shapes preferred by Peruvian men who lived in remote villages and those preferred by men “who had had more exposure to western culture.”9 Other critics have argued that because media images of exaggeratedly slender beauty are often misleadingly presented as realistically attainable, the boundaries between reality and fictionalized ideals tend to get blurred. The air of unreality, comments one reviewer, “is thickened by the juxtaposition of weight management messages with exhortations to “indulge” or “give in” to one’s guilty (diet-induced?) desires for food.”10 This position has been extensively argued in relation to
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media images of women, with most research evidence indicating that “the media might be actively engaged in reproducing and legitimating ideas about femininity that neither comply with the reality of [women’s] experience and potential nor combat the ongoing inequities, abuses and self-violations which are the familiar everyday business of women’s lives.”11 Content analyses of women’s magazines in the US and elsewhere have found that messages about weight loss or dieting are often juxtaposed with recipes for fattening foods,12 and several researchers have argued that such contradictory messages may partly account for unhealthy ‘bingepurge’ approaches to dieting. Several cross sectional studies have found “an apparent link between level of media exposure and likelihood of having an eating disorder or eating disorder symptomatology.”13 Other studies have found that young women with eating disorders report that magazines and newspapers influence their eating habits and their concept of beauty,14 and that the US college women who are most dissatisfied with their bodies and are most prone to bulimia are those who “most internalise the cultural bias toward thinness.”15 The extent to which such processes have their roots in cultural (and media-related) sources is well captured in Elizabeth Bird’s description of the cultural impact of the recent introduction of television and “the arrival of images of blonde, thin, imported beauties” into a Fijian culture: In a society that traditionally valued generous female proportions, young girls quickly learned disgust for their bodies, discovered the binge/purge syndrome, and told interviewers: “I want their body, I want their size. I want to be in the same position as they are… We have to have those thin, slim bodies…”16 According to Becker and his associates (whose research Bird is here describing), the proportion of Fijian teen girls scoring abnormally high scores on a test for disordered eating doubled three years after the introduction of television, and there was also a significant rise in cases of teenage girls reporting that they had vomited to control their weight and in the numbers of girls reporting that they felt “too big or fat.”17 Similar patterns have also been noted in media images of desirable male bodies. Most contemporary media images have been noted to portray “the V-shaped, lean, muscular body as the ideal physique for men,”18 and portrayals of men appearing alone in male-audience magazine advertisements have been found to predominantly represent the male icon as strong and muscular.19 Harrison Pope and his associates found that the proportion of undressed male models appearing in US magazines between 1958 and 1998 had risen from as little as 3% in the 1950s to as much as 35% in the 1990s (the proportion of undressed female models over the
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same period remained relatively stable, at about 20%).20 In a related study, the researchers calculated that the average Playgirl centrefold model had shed about 5.4 kg of fat, while putting on approximately 12 kg of muscle over a 25 year period.21 According to these researchers, the male physiques presented as desirable in such magazines are so large and muscular that at times they suggest the use of anabolic steroids. As Pope and his associates put it, Men have been indoctrinated by such images since early childhood – through action toys, comic strips, television, and movies – long before they were old enough to stop and question whether these images were realistic or reasonable goals for a man’s body. Remember, no previous generation of men has grown up being exposed to such a plethora of supermuscular images; before the drugs, they hardly existed. 22 So how are these recurring images of ‘beautiful people’ perceived by young consumers themselves? And how are young people’s selfimages and attitudes to their own appearance affected or inflected by such material? What happens, for instance, when young people perceive their own bodies and appearance as failing to match those of the ‘beautiful people’ whom advertisers project as ‘normal people, people anyone could relate to’? 5.
Being Young and Disabled in a Mass Mediated Culture The problems created by the media’s insistence on idealised ‘norms’ of physical health and attractiveness are perhaps most pronounced in the case of a segment of the population whose body images can never hope to match the ‘ideal’ or ‘healthy’ looks so deliberately espoused and propagated in popular films, TV programmes, magazines and advertising. In a context where advertising and entertainment media focus primarily on selling dreams of successful lifestyles linked to images of attractive young men and women disporting themselves in healthy abandon, people with disabilities are either simply ignored or else portrayed in stereotypically damaging ways.23 Society’s norms, often reinforced by repetitive media images of what we should all look like if we are healthy, or attractive, or desirable, create a situation where those with disabilities come to be seen (and also come to see themselves) as ‘the other.’ The World Health Organisation estimates that 10% of the population of any developed country are likely to be disabled. The figure for non-developed countries is estimated to be higher, and it is also estimated to be higher than average in highly developed countries, simply because countries with stronger economies can afford to broaden their definitions of disability, and presumably their financial support, to include
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cases which would not be defined as such in other countries. In Malta, eight per cent of the national population is officially registered as disabled. However, the exact number is difficult to pinpoint because registration in Malta is voluntary, and the vast majority of those who do register as disabled are older people – i.e. those who have become disabled in old age. The figures can thus be expanded or minimized depending on how disability is defined or measured. According to Malta’s National Office of Statistics’ 2003 Lifestyle Survey, for instance, nearly a quarter of the island’s population have a “long-term health problem” or “long-term disability,”24 but what exactly “long-term health problems” and “disabilities” involve, or indeed how they differ from or overlap with each other, is not explained. As is the case with other social groups that have traditionally been systematically marginalised through patronising or infantilising stereotypes, people with disabilities are still habitually perceived and portrayed in the media as primarily in need of charity, pity and “loving protection.” This is how one older disabled person who is very politically active described this situation: The thing that people tell me is: “I’ll help you, but don’t start on about rights!” They feel threatened. Same as why many men don’t like independent women. They like us to be submissive, they like us to be smiling all the time. The disabled have traditionally been stereotyped and patronised as completely valueless (they don’t earn their keep or anything), as very sweet, and very lovable! But that image ensures that the disabled person never becomes independent. I mean if you don’t get on with your parents, forget it because you’re a lifelong prisoner. When the disabled are not ignored or infantilised as helpless, they are presented as the exact opposite, again in unrealistic and unproductive ways. The same interviewee commented that many Hollywood films which focus on disability are problematic because they are predominantly stories of either triumph or tragedy. In such stories, the mundane practicalities of dealing with disability on a daily basis tend to be forgotten, and the disabled person (whether heroic ‘super-crip’ or tragic victim) remains the Other of the norm: People can’t understand why we’re not happy when we’re regarded as heroes. “But I admire you!” they say. “Why aren’t you happy?” And you keep telling them: because it’s not real, it’s not the way I live my
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Desirability and Its Discontents life. I struggle in my life. I have to put up with a lot of pain; I have to put up with a lot of misunderstandings and things like that. And that’s what you’ve got to look at, you know, there’s no miracle about getting up in the morning and going to work. It takes a lot of organization. It takes a lot of determination, and things like that. Let’s look at it from a more realistic point of view.
Within this generalised context of misrepresentation, media projections of the ‘norms’ of physical attractiveness and of healthy lifestyles become doubly problematic. A lot of films, TV programmes and advertisements play on images of sexuality, “beautiful young people,” as well as happy families and healthy parenting. In the course of my interviews, I was told that people with disabilities are not usually seen as (or even encouraged to think of themselves as) sexual beings, and they are usually assumed to be incapable of being independent or raising their own families. In this context, people with disabilities are (often unconsciously) encouraged to think of themselves as being asexual, ironically within a global media context which is increasingly sexually oriented. One of the interviewees described his recollections of growing up with severe physical disability, and of how his self image was influenced by what he saw on the media. He felt that it is portrayals of allegedly ‘normal’ and ‘unexceptional’ people and body types (as distinct from supermodels) which caused him the greatest problems. Supermodel-type adverts, he noted, were always “Peter Pan fantasy worlds” as far as he was concerned; too distant from personal reality to invite comparison. It was the less fantastical images, programmes and films which helped to forge his self image. Films and soap operas, for instance, “provide your imagination with the stories that just stay there, and stay there, and stay there. And they create images of what you would like to be.” Referring to his own recollections of what it was like to grow up as a disabled teenager, he remarked that he used to have the same sort of hopes and ambitions as other teenagers. His idols were the stars; he played in a band, and hated the fact that he was small, that the electric guitar he played seemed bigger than he was: It’s terrible when you’re young. I mean, I hated being short, I hated having very thin limbs, you know, like Kermit the frog. All the images come out. And for years and years and years you just think you’re a freak, and “why are you alive?” and if you are alive, why is your mind not messed as well so you don’t know what’s happening to you? And every time I tried to speak about how I felt, people would say:
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“Oh, you’ve got nothing to worry about. You’ve got nothing to be unhappy about!” What they were saying was “Please shut up, don’t talk about it. It’s too painful.” So you shut up ... But then it’s difficult because you don’t open up to anybody. The disabled person thus becomes the perennial ‘other’ – to be ignored or else treated as a curiosity or as an object of pity. In these ways, most commercially-dominated media contexts systematically encourage the disabled to think of their identity as being totally defined and confined by their ‘disability’. In other words, by refusing to get close enough to see people with disabilities for who they really are, these mass-mediated societies are also insisting on seeing and defining them exclusively in terms of the characteristics which they have themselves determined to be ‘abnormal’ because they ‘deviate from the norm’. 6.
Body Image Discontent among ‘Healthy’ Young Women One thing which came across to me very strongly in the course of my interviews was the fact that young people are often very sceptical about exaggerated media stereotypes of physical perfection. They often appear to enjoy drawing attention to, and even ridiculing, what they see as unrealistic portrayals of super-bodies and super-beauties. This observation is in line with Wray and Steele’s account of how the girls they studied were critical of the ways teenage girls are portrayed in teen magazines like Seventeen and YM, describing such portrayals as “unrealistic,” “mindless” and “horrible, but in a funny way.”25 But there is also considerable research evidence which indicates that young people will still wish to emulate body types glamorized by the media even when they realize that such images are air-brushed or “unrealistic”.26 The paradoxical nature of this situation is well captured in the following comment by fourteen yearold Stephanie: Sometimes they can lower your self-esteem. Like, come on, these are all perfect, why can’t I be like them? If you look around you, no one’s that perfect! Maybe there are people who look good and they don’t look bad, you know, but no one’s extremely perfect! It’s only in advertising that they show someone perfect so that you’ll want to be like them! They make you angry, you know, actually the pressure starts getting to you. It’s quite frustrating! Many of the young people I interviewed spoke of the ways in which the images projected through the media create stereotypes of sexual attractiveness which encourage girls to wish for a slim figure, and boys for a muscular one. Several young men insisted that young women are
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obsessed with the idea of slim sexual attractiveness. They also implied that this obsession comes from a desire to attract the male gaze. Echoing comments made by the advertising agents cited earlier in this chapter, young women themselves often insisted that they want to look slim because it looks better and is healthier than being overweight. Sixteen year old Tricia put it this way: I was watching a debate on TV lately, and someone stood up and said, “But let’s be realistic. Do we want to see fat slobs on TV, or people without hair, or something of the sort?” And it’s true. The media do affect us to want to look good or to eat better food, and if it doesn’t get excessive, it’s good, because after all we feel good, and if we’re what we want to be, we’re OK with ourselves. Feeling good about oneself in this context presumably means not being “a fat slob” and not losing one’s hair. The ‘norms’ against which these negative perceptions are measured are not hard to identify. Sandra, a 25 year-old factory worker, summed up the situation as follows: When you look through the magazines, all you see is young women with great figures, and everywhere you look you see stuff about dieting. And the men all have amazing bodies! And then you look at yourself in the mirror, and you say: My god! What a bloody mess! Though perhaps not always expressed as colourfully as this, these sentiments were voiced by many of the young women interviewed, irrespective of their age. For eighteen-year old Helen, The problem is not that there are unhealthily obese people who want to become thin because of what they see on the media. The real problem is that even people, friends of mine, whom I see as being very thin, still come along and say to me that they’re too fat and that they wish they were as slim as me or whatever! I was frequently told of young women’s own experiences of dieting, or (especially in accounts about friends) of eating disorders like anorexia and bulimia nervosa. One young man described his worries about a friend who “is very thin and very skinny, but insists that she’s fat” and only eats “five crackers in the morning and a piece of sliced bread in the evening.” Most of the young people I spoke to insisted that such problems are very
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widespread. Here is how sixteen year-old Jane described her own experience and that of one of her friends: There are thin people who are so affected by how, like... like you have to have a perfect body, you have to be thin, and you can’t. Like, my hips are huge; I still want them to be smaller, but … I went through a phase when I didn’t eat. Like, you lose three or four kilos in a week, but you put them on again, so it’s a waste! But I had a friend, she’s tall, very thin, and she still wasn’t eating anything. Another friend of mine blacked out last week. These perceptions are very much in line with those recorded in most of the available research on young women’s attitudes to body image in contemporary Western industrialised countries. It is also significant that such perceptions are prevalent in a media context which also encourages young consumers to eat unrealistically glamorised fast foods. Throughout my interviews, whenever McDonald’s and Burger King were mentioned, the interviewees’ eyes tended to light up, even though they frequently referred to such food as ‘junk food.’ This again fits in with the situation in other industrialised countries and is a further indication of the extent to which the problems associated with commercially inspired notions of the desirable have become globalised. According to Malta’s National Office of Statistics’ 2003 Lifestyle Survey, 7.6 per cent of Maltese females aged between eighteen and twenty-four are underweight.27 According to an earlier report published by Malta’s Health Promotion Department, the overwhelming majority of patients suffering from anorexia nervosa and bulimia nervosa in Malta in 2003 were female; almost half were aged between eighteen and twentynine, and more than a quarter were younger than seventeen.28 These figures are particularly striking when compared to the Lifestyle Survey’s revelation that sixty per cent of the Maltese population are either overweight or obese, and that 56.3 per cent of these “overweight or obese” people are males. 7.
‘Healthy’ Young Men and the Body Beautiful As I indicated above, many of the young men I interviewed insisted that boys are not as “obsessively concerned with their appearance” as girls are. This claim is of course misleading, in that though boys might not be concerned about the same aspects of appearance as girls, there is no doubt that “looking cool” is also very much a young male preoccupation. As one fifteen year-old girl put it: “Lately boys have become very vain, almost as much as girls!” One obvious area where this is very pronounced is in the way young men talk about their hair, and I was often told that hair
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gel has become a young male obsession. Other young women commented on the growing number of boys spending more and more time at the gym, having facials and pedicures, and also going in for fashion modelling. In some cases, building muscles and showing them off becomes a dominant preoccupation. One university student commented on the large number of young men in his course at university who “go to the gym just for the muscular look” and who “sometimes even stride with sleeveless tops just to show off their muscles.” Seventeen year-old Pierre similarly noted that there has been “an enormous boom in Gym memberships,” that many of his school friends go to the gym, and that they do this because they want to look sexy: “I think the majority go to the gym so as to pick up girls, not for the sport itself, to have a good figure!” There is also little doubt that young men often see themselves as being under pressure to ‘look good’ if they are to be socially (and sexually) accepted. Reactions to this perceived pressure vary considerably. Nineteen year-old Mark, for instance, described his highs and lows of self-esteem in language coming straight out of popular magazines and music videos: I’m rather a perfectionist, in what I wear, how I look and everything. So let’s face it, if you’re a perfectionist, everything has to be perfect! It’s kind of like, you wake up in the morning and you’re like, you know, you look in the mirror and it’s like, “Fuck, I’m hot here,” you know ... “I’m good looking!” Next day you wake up and say “God I look like shit! I want to go into bed and sleep there, and not let anyone see me!” Then another day, I’m like a new Greek god, and the next thing I know I’m at a party and my top’s off and I’m under the strobe dancing my head off … and the next thing I know I’m giving out numbers like confetti! Seventeen year-old Stephen, on the other hand, described his reactions to recurring media images of ‘perfect bodies’ in a way which suggested a mixture of longing and resignation: About the impact on me: OK, I’m a bit fat and so on, but not too much. OK, if you see a pretty girl, it’s all right, because it’s a girl. But if you see a young man, then you say, “Why am I not like him?” sort of. Personally, that’s what I say. It doesn’t get me down that much, however, because then I turn it around, and say, “I’ve got a lovely character; at least for me it’s very good.” But still …
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In contrast to Stephen’s half-hidden regret, nineteen year old Paul’s reactions to media images of male physical perfection were very much tempered by the fact that he considered himself lucky to have a “naturally slim body”: In my case, when I see these adverts and so on, I see them as the Greek gods stereotype, sort of the Greek god body, the Greek goddess body, that personally I don’t care to achieve. Not that I don’t want it … if it comes, welcome! But I’m not ready to work for it ‘cause I don’t really care about it! The fact that young men have in recent years become more conspicuously concerned about their physical appearance is not a phenomenon that is unique to Malta, of course. Indeed, changing attitudes towards body-shape, fashion and personal grooming among young Maltese men can be read as indicators of the extent to which young people’s perceptions and constructions of their own emerging identities are significantly moulded by their increasingly globalised media environments. Several international researchers and commentators have over recent years become interested in men’s relationship to consumption and in the ways in which perceptions of masculinity have been changing in consumer societies. 29 According to Tim Edwards, since the 1980s it has become “more socially acceptable for men to be consumers per se and, more importantly, to be consumers of their own masculinity or, in short, to look at themselves and other men as objects of desire to be bought and sold or imitated and copied.”30 The perception of male sexuality as a consumer product suggests that masculinity is coming to be perceived as something to be displayed, gazed at, envied and groomed. In many ways, these qualities have traditionally been more stereotypically associated with femininity. A great deal of this change can be attributed to changing patterns in the ways desirable men are represented in advertisements and in the media more generally.31 In this regard, Edwards describes “a series of apparently unprecedented and diverse developments starting in the midto late 1980s,” including a record rise in male-targeted advertising for men’s body-grooming products, cosmetics and designer fashions. All these developments, notes Edwards, “were also increasingly constructing men as the objects as well as subjects of consumer desire, sometimes in blatantly sexual ways.”32 In the course of one of the interviews I conducted in 2002, Mark (then just turning sixteen) described what he understood to be the most common reactions to media images of ‘ideal’ body types: Every girl I’ve ever met, however thin she was, always said that she’s too fat! Some boys I know who
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When I quoted this statement back to Mark during a follow-up interview three years later, he commented that he now realises that those assertions were actually about himself and his own desires. In the more recent interview he spoke more openly (and again in terms conspicuously borrowed from films and other media) about how he had desired to lose weight from when he “realised he was a fat lumpy kid” when he was nine years old: I used to be a fat, lumpy kid, and up to some time ago, I was still a fat lumpy kid, and I hated being a fat lumpy kid. I keep repeating the phrase ‘a fat lumpy kid’ because that’s what I was! Actually, after a lot of turmoil, I managed to lose weight. I managed to achieve a decent body image, where I now know how to hide the wobbly bits. That comes from Bridget Jones’ Diary 2, “wobbly bits.” So, it’s OK now… I’m very healthy but my body is still not what I want it to be. Mark had not struck me as being overweight when I first interviewed him at age fifteen, but his concern about achieving and maintaining weight loss appears to have reached a peak during the period between the two interviews. At another point in the more recent interview, he got very impatient with the other members of the focus group (whom he has known for many years) because they were insisting that they are quite happy with their own body shapes, and that, as one of them put it, “You don’t have to be well built or to have a super body to have a desirable and a healthy shape” since “an ideal physical body shape is equivalent to a healthy one.” These comments triggered the following reaction from Mark: None of you here have ever had the problem of having to lose weight. You don’t know what it’s like to have to lose weight. You don’t know what a feeling it is to go from a size 34 to a size 29 waist.
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You don’t know that feeling of achievement. I passed all the exams I’ve ever sat for in my life, but I never felt a sense of achievement like I felt when I lost those twelve kilos inside the space of a month. That was like, Wow! I did it! Something I’ve been wanting to do for all my bloody life! I have finally done it! I was up to 78 kilos, which is the highest I ever was in my adult life. For many young people like Mark, achieving the ‘right’ appearance is vitally important. The idea that achieving this ‘right appearance’ might also equate with being healthy is more likely to be an afterthought than a primary motivation – and health concerns seem to be totally neglected when the aim is to lose weight fast. As Mark put it: I lost weight in a very unhealthy way, but for me, ‘healthy’ and ‘image’ don’t go together. I mean, I’m one of those people who is very body conscious – the type who goes: Oh I want that body! I’m very stereotypical in that sense! Very much, you know, Oh my, God! I have to have that! I’m very much that kind of person! 8.
Conclusion: Globalising Desire The growth of global commercial media has created a situation where young people’s attitudes to their own bodies virtually everywhere appear to be following similar media-inspired patterns, where “girls are taught to view their bodies as ‘projects’ that need work before they can attract others, whereas boys are likely to learn to view their bodies as tools to use to master the environment.”33 These attitudes are peculiarly Western and capitalist, in that, as Brian Pronger suggests, their underlying worldview understands the body “as lacking and as in need of strategies to accumulate resources to protect itself against the dangers of lack.” The body thus becomes what Pronger calls “a resource management project in the economics of lack,” which in turn makes it “available as a resource for the modern capitalist project that reterritorializes desire for the development of production and consumption.”34 It is worth noting that many of the attitudes and perceptions described in this chapter are also strongly inflected by class and socioeconomic background. For instance, gym attendances, or even concern about body size, do not appear to be as common among young men coming from lower socio-economic backgrounds as they are with those coming from more affluent or upwardly mobile classes. Many of the working-class young women I interviewed were convinced that men are not anywhere as worried about their weight or physical appearance as
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women are, and several said that they thought that it actually looks better for a man to be large or stocky. One fifteen year old girl remarked that “if a guy is a bit fat we’re not going to take much notice; we’re not expecting to go out with a model or something!” Girls will diet so as to stay slim, they pointed out, but in more traditionally working class Maltese contexts at least, boys and men don’t fret about their weight or looks. This attitude may well be related to still dominant patriarchal expectations among Malta’s lower socio-economic classes, where the majority of women do not work outside the home and often expect to remain dependent on husbands for their livelihood. There are complex cultural and historical forces underlying such attitudes, most of them deriving from Malta’s Southern European, Mediterranean, and Roman Catholic heritage. What is perhaps most pertinent for the present discussion is the fact that it is young people coming from Malta’s middle and professional classes who have become most obviously and in some cases even obsessively concerned about achieving the ‘right’ body shape and appearance. In the course of my interviews, I was often struck by how these young people frequently distance themselves from what they consider the ‘traditional’ Maltese way of life, and how they associate being young, forward-looking, modern, technologically advanced and enlightened with being in tune with what comes from overseas – or more specifically, with what comes from Western Europe, Britain and the United States, particularly through the media.35 One of the manifestations of this longing for alignment with a wider global context is these young people’s desire to emulate the ideals of physical perfection propagated by Western-style media. Another is the frustration, discontent and selfloathing which many of them experience when their bodies fail to match or mimic those ideals.
Notes 1 See, for instance, Maggie Wykes and Barrie Gunter, The Media and Body Image: If Looks Could Kill (London: Sage, 2005); Sung-Yeon Park, “The Influence of Presumed Media Influence on Women’s Desire to Be Thin,” Communication Research 32 (2005): 594-614; Ida Jodette Hatoum and Deborah Belle, “Mags and Abs: Media Consumption and Bodily Concerns in Men,” Sex Roles 51(2004): 397-407; Marita P. McCabe and Lina A. Ricciardelli, “Sociocultural Influences on Body Image and Body Changes Among Adolescent Boys and Girls,” The Journal of Social Psychology 143 (2003): 5-26; Murnen, Sarah K. et al., “Thin, Sexy Women and Strong, Muscular Men: Grade-School Children’s Responses to Objectified Images of Women and Men,” Sex Roles 49 (2003): 427-438; Pope, Harrison G. et al., The Adonis Complex: How to Identify, Treat, and Prevent Body Obsession in Men
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and Boys (New York: Touchstone, 2002); Michael P. Levine, “Mass Media and Body Image: A Brief Review of the Research,” Healthy Weight Journal, Nov-Dec 2000, 84-86; Rabak-Wagener, Judith et al., “The Effect of Media Analysis on Attitudes and Behaviors Regarding Body Image Among College Students,” Journal of American College Health 47 (1998): 29-40; Jane Ogden and Kate Mundray, “The Effect of the Media on Body Satisfaction: The Role of Gender and Size,” European Eating Disorder Review 4 (1996): 171-182. 2 Stuart Hall, “Cultural Identity and Diaspora,” in Identity and Difference, ed. Kathryn Woodward (London: Sage, 1997), 51; Judith Butler, Gender Trouble: Feminism and the Subversion of Identity (London: Routledge, 1990), 25. 3 For full reports on the projects see Joe Grixti, Broadcasting and the Young Adult Consumer: Local and Global Media Influences on Maltese Youth Culture (Hamrun, Malta: Broadcasting Authority, 2004) and Young People and the Broadcasting Media: The Maltese Experience (Hamrun, Malta: Broadcasting Authority, 2000). 4 See Wykes and Gunter, 36-37; and April Fallon, “Culture in the Mirror: Sociocultural Determinants of Body Image,” in Body Images: Development, Deviance and Change, ed. Thomas F. Cash and Thomas Pruzinsky (New York: Guildford Press, 1990), 80-109. 5 Murnen et al, 428. See also Wykes and Gunter, 211; Dale L. Cusumano and J. Kevin Thompson, “Body Image and Body Shape Ideals in Magazines: Exposure, Awareness and Internalisation,” Sex Roles 37 (1997): 702; and A. Chris Downs and Sheila K. Harrison, “Embarrassing Age Spots or Just Plain Ugly? Physical Attractiveness Stereotyping as an Instrument of Sexism on American Television Commercials,” Sex Roles 13 (1985): 9-19. 6 Linda J. Hofschire and Bradley S. Greenberg, “Media’s Impact on Adolescents’ Body Dissatisfaction,” in Sexual Teens, Sexual Media: Investigating Media’s Influence on Adolescent Sexuality, ed. Brown, Jane D. et al. (Mahwah, NJ: Lawrence Erlbaum, 2002), 126-127. 7 Victor C. Strasburger and Barbara J. Wilson, Children, Adolescents and the Media (Thousand Oaks: Sage, 2002), 264. 8 Wykes and Gunter, 141. 9 Neil Underwood, “Body Envy,” Maclean’s, 14 August 2000, 37. See also Alyson Kay Spurgas, “Body Image and Cultural Background,” Sociological Inquiry 75 (2005): 297–316. 10 Levine, 84; see also J. Kevin Thompson and Leslie J. Heinberg, “The Media’s Influence on Body Image Disturbance and Eating Disorders,” Journal of Social Issues 55 (1999): 339–353. 11 Wykes and Gunter, 220. 12 See Malkin, Amy R. et al., “Women and Weight: Gendered Messages on Magazine Covers,” Sex Roles 40 (1999): 647-55; and Silverstein, Brett et al., “The Role of the Mass Media in Promoting a Thin Standard
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of Bodily Attractiveness for Women,” Sex Roles 14 (1986): 519-532. 13 Strasburger and Wilson, 264. 14 Murray, Sara H. et al., “Awareness and Perceived Influence of Body Ideals in the Media: A Comparison of Eating Disorder Patients and the General Community,” Eating Disorders: The Journal of Treatment and Prevention 4 (1996): 33-46. 15 Thompson, J. Kevin et al., Exacting Beauty: Theory, Assessment, and Treatment of Body Image Disturbance (Washington, DC: American Psychological Association, 1999). 16 S. Elizabeth Bird, The Audience in Everyday Life: Living in a Media World (New York: Routledge, 2003), 168. 17 Anne E. Becker, Body, Self and Society: The View from Fiji (Philadelphia: University of Philadelphia Press, 1995); Becker, Anne E. et al., “Eating Behaviours and Attitudes Following Prolonged Exposure to Television among Ethnic Fijian Adolescent Girls,” British Journal of Psychiatry 180 (2002): 509-514. 18 Roberto Olivardia, “Body Image Obsession in Men,” Healthy Weight Journal, July-August 2002, 59. 19 Richard H. Kolbe and Paul J. Albanese, “Man to Man: A Content Analysis of Sole-Male Images in Male Audience Magazines,” Journal of Advertising 25 (1996): 1-20. 20 Pope, Harrison G. et al, “The Growing Commercial Value of the Male Body: A Longitudinal Survey of Advertising in Women’s Magazines,” Psychother Psychosom 70 (2001): 189-192. 21 Leit, Richard A. et al., “Cultural Expectations of Muscularity in Men: The Evolution of Playgirl Centrefolds,” International Journal of Eating Disorders 29 (2001): 90-93. 22 Pope et al., Adonis Complex, 46. 23 See Jack A. Nelson, The Disabled, the Media and the Information Age (Westport, Connecticut: Greenwood Press, 1994); Charles A. Riley, Disability and the Media: Prescriptions for Change (Hanover, NH: University Press of New England, 2005); Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media (Lanham: Rowman & Littlefield, 2002); and European Disability Forum, “European Declaration on Media and Disability,” 2003 (9 January, 2004). . 24 National Statistics Office, Malta, Lifestyle Survey (Valletta: National Statistics Office, 2003), 12-16. 25 Jennifer Wray and Jeanne R. Steele, “Girls in Print: Figuring Out What It Means to Be a Girl,” in Brown et al., 198. 26 See Rabak-Wagener et al. 27 National Statistics Office, 37. 28 Health Promotion Department, Malta, “Eating Disorders Awareness Week,” 11 July 2003, (29 May 2005).
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29 See Pope et al., Adonis Complex; Hatoum and Belle; Frank Mort, Cultures of Consumption: Masculinities and Social Space in Late Twentieth-Century Britain (London: Routledge, 1996); Sean Nixon, Hard Looks: Masculinities, Spectatorship and Contemporary Consumption (New York: St Martin’s Press, 1996); Bill Osgerby, Playboys in Paradise: Masculinity, Youth and Leisure-style in Modern America (Oxford: Berg, 2001); Yang, Chi-Fu Jeffrey et al., “Male Body Image in Taiwan versus the West: Yanggang Zhiqi Meets the Adonis Complex,” American Journal of Psychiatry162 (2005): 263-269. 30 Tim Edwards, Men in the Mirror: Men’s Fashion, Masculinity and Consumer Society (London: Cassell, 1997), 73. 31 See Olivardia; Kolbe and Albanese; Leit et al.; Pope et al., “Growing Commercial Value.” 32 Tim Edwards, Contradictions of Consumption: Concepts, Practices and Politics in Consumer Society (Buckingham: Open University Press, 2000), 135. 33 Stephens, Debra Lynn et al, “The Beauty Myth and Female Consumers: The Controversial Role of Advertising,” Journal of Consumer Affairs 28 (1994): 137-153. 34 Brian Pronger, Body Fascism: Salvation in the Technology of Physical Fitness (Toronto: University of Toronto Press, 2002), 156-157. 35 See Joe Grixti, “Symbiotic Transformations: Youth, Global Media and Indigenous Culture in Malta,” Media, Culture and Society 28 (2006): 105-122.
Bibliography Becker, Anne E. Body, Self and Society: The View from Fiji. Philadelphia: University of Philadelphia Press, 1995. Becker, Anne E., Rebecca A. Burwell, Stephen E. Gilman, David B. Herzog and Paul Hamburg. “Eating Behaviours and Attitudes Following Prolonged Exposure to Television among Ethnic Fijian Adolescent Girls.” British Journal of Psychiatry 180 (2002): 509-514. Bird, S. Elizabeth. The Audience in Everyday Life: Living in a Media World. New York and London: Routledge, 2003. Butler, Judith. Gender Trouble: Feminism and the Subversion of Identity. London: Routledge, 1990. Cusumano, Dale L. and J. Kevin Thompson. “Body Image and Body Shape Ideals in Magazines: Exposure, Awareness and Internalisation.” Sex
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Roles 37 (1997): 701-721. Downs, A. Chris and Sheila K. Harrison. “Embarrassing Age Spots or Just Plain Ugly? Physical Attractiveness Stereotyping as an Instrument of Sexism on American Television Commercials.” Sex Roles 13(1985): 9-19. Edwards, Tim. Men in the Mirror: Men’s Fashion, Masculinity and Consumer Society. London: Cassell, 1997. Edwards, Tim. Contradictions of Consumption: Concepts, Practices and Politics in Consumer Society. Buckingham and Philadelphia: Open University Press, 2000. European Disability Forum. “European Declaration on Media and Disability”. 2003. (9 January, 2004). Fallon, April. “Culture in the Mirror: Sociocultural Determinants of Body Image.” In Body Images: Development, Deviance and Change edited by Thomas F. Cash and Thomas Pruzinsky, 80-109. New York: Guildford Press, 1990. Goggin, Gerard and Christopher Newell. Digital Disability: The Social Construction of Disability in New Media. Lanham: Rowman & Littlefield, 2002. Grixti, Joe. Young People and the Broadcasting Media: The Maltese Experience. Hamrun, Malta: Broadcasting Authority, 2000. Grixti, Joe. Broadcasting and the Young Adult Consumer: Local and Global Media Influences on Maltese Youth Culture. Hamrun, Malta: Broadcasting Authority, 2004. Grixti, Joe. “Symbiotic Transformations: Youth, Global Media and Indigenous Culture in Malta.” Media, Culture and Society 28 (2006): 105122. Hall, Stuart. “Cultural Identity and Diaspora.” In Identity and Difference, edited by Kathryn Woodward, 51-59. London: Sage, 1997. Hatoum, Ida Jodette and Deborah Belle. “Mags and Abs: Media Consumption and Bodily Concerns in Men.” Sex Roles 51 (2004):397407. Health Promotion Department, Malta, “Eating Disorders Awareness Week.” 11 July 2003.
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(29 May 2005). Hofschire, Linda J. and Bradley S. Greenberg. “Media’s Impact on Adolescents’ Body Dissatisfaction.” In Sexual Teens, Sexual Media: Investigating Media’s Influence on Adolescent Sexuality, edited by Jane D. Brown, Jeanne R. Steele and Kim Walsh-Childers. Mahwah, NJ: Lawrence Erlbaum, 2002. Kolbe, Richard H. and Paul J. Albanese. “Man to Man: A Content Analysis of Sole-Male Images in Male Audience Magazines.” Journal of Advertising 25 (1996): 1-20. Leit, Richard A., Harrison G. Pope and James J. Gray. “Cultural Expectations of Muscularity in Men: The Evolution of Playgirl Centrefolds.” International Journal of Eating Disorders 29 (2001): 90-93. Levine, Michael P. “Mass Media and Body Image: A Brief Review of the Research.” Healthy Weight Journal, Nov-Dec 2000, 84-86. Malkin, Amy R., Kimberlie Wornian and Joan C. Chrisler. “Women and Weight: Gendered Messages on Magazine Covers.” Sex Roles 40 (1999): 647-55. McCabe, Marita P. and Lina A. Ricciardelli. “Sociocultural Influences on Body Image and Body Changes Among Adolescent Boys and Girls.” The Journal of Social Psychology 143 (2003): 5-26. Mort, Frank. Cultures of Consumption: Masculinities and Social Space in Late Twentieth-Century Britain. London: Routledge, 1996. Murnen, Sarah K., Linda Smolak, J. Andrew Mills and Lindsey Good. “Thin, Sexy Women and Strong, Muscular Men: Grade-School Children’s Responses to Objectified Images of Women and Men.” Sex Roles 49 (2003): 427-438. Murray, Sara H., Stephen W. Touyz and Peter J.V. Beaumont. “Awareness and Perceived Influence of Body Ideals in the Media: A Comparison of Eating Disorder Patients and the General Community.” Eating Disorders: The Journal of Treatment and Prevention 4 (1996): 3346. National Statistics Office, Malta. Lifestyle Survey. Valletta: National Statistics Office, 2003.
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Nelson, Jack A. The Disabled, the Media and the Information Age. Westport, Connecticut: Greenwood Press, 1994. Nixon, Sean. Hard Looks: Masculinities, Spectatorship and Contemporary Consumption. New York: St Martin’s Press, 1996. Ogden, Jane and Kate Mundray. “The Effect of the Media on Body Satisfaction: The Role of Gender and Size.” European Eating Disorder Review 4 (1996): 171-182. Olivardia, Roberto. “Body Image Obsession in Men.” Healthy Weight Journal, July-August 2002, 59-63. Osgerby, Bill. Playboys in Paradise: Masculinity, Youth and Leisure-style in Modern America. Oxford: Berg, 2001. Park, Sung-Yeon. “The Influence of Presumed Media Influence on Women’s Desire to Be Thin.” Communication Research 32 (2005): 594614. Pope, Harrison G., Roberto Olivardia, John J. Borowiecki and Geoffrey H. Cohane. “The Growing Commercial Value of the Male Body: A Longitudinal Survey of Advertising in Women’s Magazines.” Psychother Psychosom 70 (2001): 189-192. Pope, Harrison G., Katherine A. Phillips and Roberto Olivardia. The Adonis Complex: How to Identify, Treat, and Prevent Body Obsession in Men and Boys. New York: Touchstone, 2002. Pronger, Brian. Body Fascism: Salvation in the Technology of Physical Fitness. Toronto: University of Toronto Press, 2002. Rabak-Wagener, Judith, JoAnn Eickhoff-Shemek and Lisa Kelly-Vance. “The Effect of Media Analysis on Attitudes and Behaviors Regarding Body Image among College Students.” Journal of American College Health 47 (1998): 29-40. Riley, Charles A. Disability and the Media: Prescriptions for Change. Hanover, NH: University Press of New England, 2005. Silverstein, Brett, Lauren Perdue, Barbara Peterson and Eileen Kelly. “The Role of the Mass Media in Promoting a Thin Standard of Bodily Attractiveness for Women.” Sex Roles 14 (1986): 519-32. Spurgas, Alyson Kay. “Body Image and Cultural Background.”
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Sociological Inquiry 75 (2005): 297–316. Stephens, Debra Lynn, Ronald Paul Hill and Cynthia Hanson. “The Beauty Myth and Female Consumers: The Controversial Role of Advertising.” Journal of Consumer Affairs 28 (1994): 137-153. Strasburger, Victor C. and Barbara J. Wilson. Children, Adolescents and the Media. Thousand Oaks: Sage, 2002. Thompson, J. Kevin and Leslie J. Heinberg. “The Media’s Influence on Body Image Disturbance and Eating Disorders.” Journal of Social Issues 55 (1999): 339–353. Thompson, J. Kevin, Leslie J. Heinberg, Madeline Altabe and Stacey Tantleff-Dunn. Exacting Beauty: Theory, Assessment, and Treatment of Body Image Disturbance. Washington, DC: American Psychological Association, 1999. Underwood, Neil. “Body Envy.” Maclean’s, 14 August 2000, 36-41. Wray, Jennifer and Jeanne R. Steele, J.R. “Girls in Print: Figuring Out What It Means to Be a Girl.” In Sexual Teens, Sexual Media: Investigating Media’s Influence on Adolescent Sexuality, edited by Jane D. Brown, Jeanne R. Steele and Kim Walsh-Childers, 191-209. Mahwah, NJ: Lawrence Erlbaum, 2002. Wykes, Maggie and Barrie Gunter. The Media and Body Image: If Looks Could Kill. London: Sage, 2005. Yang, Chi-Fu Jeffrey, Peter Gray and Harrison G. Pope. “Male Body Image in Taiwan versus the West: Yanggang Zhiqi Meets the Adonis Complex.” American Journal of Psychiatry 162 (2005): 263-269.
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Note on Contributor Joe Grixti is senior lecturer and coordinator of the graduate media studies programme at the Auckland campus of Massey University, New Zealand. Previous publications include Terrors of Uncertainty: The Cultural Contexts of Horror Fiction (Routledge). His current research interests are in interdisciplinary approaches to cultural identity, media and globalization.
Writing Size Zero: Figuring Anorexia in Contemporary World Literatures Isabelle Meuret Abstract Anorexia is here explored on the basis of literary texts written at the end of the twentieth century. Although self-starvation has always existed, it took epidemic proportions at the turn of the millennium. As a result, the fascination for this enigmatic pathology has been growing without any satisfying treatment being found. Self-starvation is a very complex endeavour, the objective of which is often to approach one’s limit as a living being, but without dying. By focusing on experiential texts, this paper aims to bring to light new epistemologies, as well as to debunk some myths regarding anorexia nervosa. Indeed, the pathology cannot be reduced to a disease of young female white Westerners, as it is often claimed. Testimonies from America and Europe abound, but texts from postcolonial countries also testify to the presence of anorexia. In these texts, anorexia takes on many different meanings. Surprising is also the fact that a number of prominent authors suffered from anorexia, which reinforces the argument that it is a writing disorder. This chapter therefore highlights the intriguing relation between writing and starving. While anorexia is a debilitating experience, “Writing Size Zero” is an ethical process. By appending a message to their pathology, the authors make sense of anorexia and participate in the creation of curative cultures. “Writing Size Zero” is a gift of life. Keywords: anorexia, pathology, figuration, curative culture, postcolonial literature 1.
The Anorexic Experience The once enigmatic term anorexia, which was hardly known before the 1980s, has today become common parlance. Like hysteria in the nineteenth century, anorexia nervosa, as it is qualified today, has become a fin de siècle disease and sparked off massive interest from doctors and researchers from a variety of disciplines. This compelling pathology has copiously fed the medical, but also psychological, cultural, feminist, and sociological literature, to wit the number of books on the topic and the publication of magazines which specialise in eating pathologies. Wellestablished reviews like the American Journal of Eating Disorders dissect the body ad nauseam, with articles ranging from the origins of anorexia in the brain to anorexia in the black population to male anorexia.
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True, the pathology is fascinating and, as Maud Ellmann argues in her impressive study on self-starvation and writing, The Hunger Artists (1993), anorexia is “a strange adventure in seduction” as you cannot starve without obliging the other to intervene.1 Nevertheless, starving in a world of plenty is a daring challenge. As anorexia reached epidemic proportions at the turn of the century and is now estimated to have the highest death rate of all psychiatric disorders in the West, it is clear that it is more than the passing fad of fashion-conscious teenagers. Joan Jacobs Brumberg is right to insist that “[t]he symptoms of a disease never exist in a cultural vacuum” and that “[s]ocieties create their own symptom repertoires.”2 The United States is waging a war against obesity, while Europe and Asia are currently being threatened by a similar scourge. This may partly explain why anorexia is no accidental phenomenon. In a sense, the starving body epitomises what Jean Baudrillard calls the “meeting between beauty and repression in the cult of the figure,” squeezed as it were between the “fashion imperative” and “the death imperative.”3 But the point here is not to seek more culprits or to weigh in with accusations. My contribution does not aim to define anorexia even further, neither is it a search for additional categorisation of the term, for that matter. As previous research on the topic has shown, tinkering with the criteria has not helped therapy significantly.4 On the contrary, the development of an ever more complex vocabulary may have alienated patients, making the obsession with conceptualisation take precedence over healing itself. Supposing that anorexia can be triggered off by a variety of factors, be they physiological, psychological, or even philosophical, it is an almost impossible task to agree on one definition that would suit any case. There are unquestionably various forms of anorexia, as Hilde Bruch already showed a few decades ago. She distinguished between typical and atypical forms of self-starvation,5 depending on whether the symptom was isolated or related to other psychiatric disorders, such as schizophrenia. It is worth noting that the psychiatric research of the 1960s and 70s recorded cases of anorexia in both males and females, while research since then has been massively oriented toward women, as if anorexia had definitively become a female malady. In the manner of Susan Sontag, I would argue that anorexia is not a metaphor. Anorexics are literally starving to free themselves from the shackles of their being-in-the-world. My contention is that abstaining from food is a pathology in the sense that Georges Canguilhem confers to the term, i.e. the expression of pathos and an effort of the organism to regain its balance and retrieve its harmony, whatever it takes.6 Therein lies maybe a space for negotiating unusual definitions of the pathology and, possibly, creating new epistemologies. By focusing on experiential texts or so-called autofictions written by women who suffer(ed) from self-starvation or witness(ed) a relative’s
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condition, my intention is to provide an insight into the grammatology or semiotics of anorexia. The creative process through which these authors make sense of their pathology is what I venture to call “Writing Size Zero.” Second, my contribution aims to dismantle some myths typically related to self-starvation. Indeed, although anorexia is a killer, it cannot be reduced to a debilitating disease. Given the enormous attention that it has received in the last decades, it was bound to fall prey to a number of preconceptions and reductive interpretations. For instance, anorexia is usually regarded as the malady of young white female upper-class westerners. Such prejudice forecloses the possibility that other individuals might be affected. In this perspective, the multicultural aspect of the corpus under scrutiny is of special interest. Hopefully, this tentative literary exploration will shed some light on anorexia and, most importantly, contribute to bringing more respect to the so-called patients and to thinking about appropriate treatment. When it comes to healing, it is difficult to dispense with the fact that it is a relative notion in the case of anorexia. Given the addictive nature of the pathology and the way it affects the individual’s chemistry, learning to cope with it on a daily basis, or coming to terms with its chronicity, is what most sufferers have come to accept. 2.
The Anorexic Background A thorough examination of medical and historical sources reveals that the fascination for anorexia is a long-standing phenomenon. As it has often been repeated, the term was first coined simultaneously in England and in France in 1873, respectively as anorexia nervosa by William Gull and as anorexie hystérique by Charles Lasègue. Still, a case of “nervous consumption” was described earlier by Richard Morton (1689), which he further expanded in his Phthisologia; or, a Treatise on Consumptions (1694). A phase of insanity called “sitomania,” or fear of food, was also identified by William Stout Chipley in 1859.7 For Rudolph Bell, the current anorexia nervosa has a link with the holy anorexia of medieval saints. Although one should not obliterate the religious rationale behind the fasting of those women, and their lack of concern with thinness, there remains a common attitude of abnegation and need to control their bodily appetites. Granted, it is impossible to conflate medieval and modern fasting because of the different cultural contexts in which they occur, but Bell insists that both involve “the need to establish a sense of self, a contest of wills, a quest for autonomy.” 8 Moreover, the socalled vitae, like contemporary confessions, were very effective means to publicise holy anorexia. Today, Elaine Showalter raises questions as to the countless self-help books and autobiographies which may have the same pernicious effect as the hagiographies of the Middle Ages.9 Carolyn Walker Bynum, for her part, identifies various forms of fasting depending on the underlying motivation behind self-starvation in
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her impressive study on the significance of food to medieval saints. 10 The key issue for Bynum is to understand why food has always been central as a language of protest for women. Again, Brumberg’s demonstration is instrumental in understanding the historical evolution “from sainthood to patienthood.”11 Fasting women commanded admiration and inspiration; but the fascination was short-lived and only lasted until the sixteenth century, when the clergy decided that these women were insane. The ascetic determination that pervades the testimonies collected by Caroline Giles Banks is undeniable, and the overrepresentation of anorexia in the Jewish population is a fact, as Dr Thomas Silber has shown.12 In these cases, however, my own conviction is that the pathology is determined, at least partially, by the particular background of the sufferers. Minimising the religious heritage might skew the interpretation of the starving experience as being intrinsically spiritual. Obviously, the ritual of the dieting process provides a structure for subjects who may lack substance and need a sense of direction. Brumberg is well-inspired to emphasise that sadly enough, the pursuit of thinness is one of the few coherent philosophies of the self offered to young women today. Religious or not, the objective is, Maud Ellmann argues, to experience “a miraculous transfiguration, be it “in the body of a movie star” or “the body of an angel.”13 The very term anorexia nervosa is a modern construction, which poses limits as to the signification of self-starvation today. Like Jacques Maître, I prefer to cut the term to the bone and to relieve it from any oversimplification or improper interpretation. Maître contends that there is an “anorexic way of being in the world,” which might even be thought of as an anorexic ideology.14 Clearly, “morbidity is still a way of life,” as Georges Canguilhem argues.15 But as the overabundance of studies on anorexia proves, my position is that the pathology is saturated with meanings, so much so that some authors now refer to its inevitable “coding problem.” Abigail Bray conceives of anorexia as a “reading disorder,” given that “the territory of the anorexic body has been colonized by a motley group of discourses contesting the truth of the anorexic lack.”16 She denounces the imprisonment of anorexics in “the sentence of the medical discourse” and regrets that anorexics have to fit in a prewritten scenario. There is indeed an “epidemic of signification,” both within the field of medicine and in other disciplines. The latest version of the American psychiatric manual, DSM IV, lists an increasing number of entries for eating disorders. Anorexia is now a code number, DSM IV307.1, which raises questions as to the dehumanisation of the pathology. As mentioned earlier, some doctors and therapists believe that creating subcategories has not helped at all.17 On the contrary, the “epidemic of signification,” as Bray calls it, has contributed to the mythologizing of
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anorexia. So, while there has been a growing concern for the pathology, the task of curing self-starvers has become even more complicated. Nevertheless, although Bray makes a point in denouncing the fact that right-thinking doctors and therapists may have induced more stress or despair in some patients, it would be an outright aberration to disregard the medical breakthroughs in the field. The current research carried out on both sides of the Atlantic, for instance by Dr Walter Kaye, a professor of psychiatry at the University of Pittsburgh, and the team of Dr David Collier and Dr Janet Treasure in England, focuses on the genetic and biological predispositions of people with eating disorders.18 By identifying the genes that could possibly be responsible for anorexia – a process which implies a careful observation of the levels of serotonin in the patients’ brains – these scientists undeniably contribute to a better understanding of anorexia and to the development of effective medication. 3.
Literary Perspectives Several critics have written about women and self-starvation in literature at different periods of time, from Renaissance drama to more recent novels. Sandra Gilbert and Susan Gubar’s Madwoman in the Attic (1979), Donalle Frega’s Speaking in Hunger (1998), Sarah Sceats’s Food, Consumption and the Body in Contemporary Women’s Fiction (2000) are good illustrations of this. These books deal with starving authors ranging from Emily Brontë to Christina Rossetti, to Emily Dickinson, or Doris Lessing, to name just a few. The numerous occurrences of anorexia in the Victorian period have been brought into relief by Anna Krugovoy Silver in the latest Victorian Literature and the Anorexic Body (2004). The author highlights the continuity between the nineteenth century woman, whose control of the body was a “fundamental component of Victorian female gender ideology,” and the current frenzy to conform to beauty ideals.19 For Silver, anorexia is ultimately a cultural paradigm. As Gilles Deleuze and Félix Guattari said about Kafka’s work, writing is fasting because food and words compete with each other.20 It seems that for some authors a language problem may be the founding basis of their self-starvation, even though writing is also their saving grace. Indeed, Deleuze exposes the idea that anorexia is a “combination of fluxes,” a complex “regime of signs” mixing a variety of particles and not just food fluxes.21 Among them, he identifies fluxes of sexuality but also, and most pertinently, fluxes of words. Commenting on Virginia Woolf’s passage from one element to the other, that is from writing to starving, Deleuze then wonders whether her anorexia was necessary, as if some fluxes could cancel each other.22 Intriguing is the fact that a number of prominent writers were anorexic, and some established a link between their pathology and writing. Among the so-called hunger artists, Maud Ellmann mentions André Gide, Lord Byron, and Franz Kafka. Gide confessed in his journal that he
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suffered from anorexia and that writing helped him get his appetite back.23 Byron is often cited as the perfect model of the romantic self-starving artist, and is known for his obsession with diets. He spent his life trying to dominate his appetites and tame his body.24 Kafka wrote in his diary that he had to abstain from food and even “diet in all … directions” in order to be able to write.25 Neither was Karen Blixen productive when she ate: “it [was] preferable for [her] to suffer the pangs of hunger, because being overweight ‘cramp[ed] [her] style’.”26 She thus preferred to starve herself for art’s sake. While exploring the “Writing Size Zero” process, the works of Leslie Heywood and Maud Ellmann have been portentous sources of inspiration, the former in identifying how an anorexic logic and aesthetic permeated modernist literature, the latter in developing the analogy between writing and starving.27 But while Heywood underlines the becoming text of the literal body, Ellmann inverts the creative process by stating that “we write to starve.”28 I attempt to follow in their footsteps by discussing further this intimate relationship between fasting and writing, and by exploring for my part the “becoming flesh” of the textual body. I therefore maintain that anorexia and writing are two faces of the same coin. Both signifying practices are – solidly or flimsily – grounded in the body and figured by a specific language imbued with mementoes of the flesh. In The Pleasure of the Text, Roland Barthes explains that “[t]he writer is someone who plays with his mother’s body … in order to glorify it, to embellish it, or in order to dismember it, to take it to the limit of what can be known about the body.”29 Writing, then, is the production of a “linguistic flesh,” which is a substitute for the body of the we(a)ning author.30 In other words, the writing process of anorexics is beyond representation and is more on the side of “figuration.” Abigail Bray and Claire Colebrook denounce the harmful effects that excessive representations can have on anorexics: In terms of eating disorders, this ambivalence surrounding representation might be cashed out as follows: the anorexic is the victim of representation, trapped in embodiment through stereotypical and alienating images – but at the same time only representation can cure this malaise; only a realistic, nonrepressive and less regulative form of representation will allow women to see themselves as autonomous subjects.31 Bray and Colebrook’s conceptualisation of the anorexic body as “productive rather than representational” is predicated upon the Deleuzean theoretical interpretation of anorexia as a complex mechanism, as already described above.32 Anorexics are dealing with a prismatic life experience
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and are trying to cope with the concurrent short-circuit of their different fluxes. Most anorexic writers turn to a fragmented kind of writing as they resort to their own sensations to translate self-starvation. Prisoners of language and food obsessions, and often entangled in an enmeshed relationship with their mothers, anorexics regress to a pre-subjective stage. Unable to define their body outline, they desperately lack autonomy and have no access to the other’s desire. Their figurative writing, a semiotic assemblage of flesh and words, enacts these sensations as much as it keeps them in motion. Anorexic writing is more on the side of “figuration” than representation, since the latter is what Barthes calls an “embarrassed figuration,” i.e. “when nothing emerges, when nothing leaps out of the frame.”33 Relieved of the burden of dominant discourses and of the weight of restrictive interpretations, “Writing Size Zero” is thus the dynamic binding of multifarious vanishing lines, or fluxes, as described by Deleuze. This creative process has also led to an écriture faminine, that is a literary movement consisting of texts rooted in or connected to anorexia. One might object that the plethora of self-help books and autobiographies published both in the United States and Europe do not always meet satisfactory quality standards, but the phenomenon cannot be ignored. Moreover, texts have also emerged from more surprising places regarding the alleged overrepresentation of the pathology in the West. The diary of Algerian author Sabrina Kherbiche and the novel Nervous Conditions by Zimbabwean writer Tsitsi Dangarembga are two cases in point.34 In both texts, anorexia is related to problems of hybridity experienced by two adolescent girls. The former, Kherbiche, daughter of an Algerian father and a French mother, is torn apart between her two cultures, all the more so since she loses her virginity before marriage, which means disgrace, according to Algerian mores. Nevertheless, she has her hymen resewn inside her body, hence the title of her diary, La Suture (1993). On the wedding night, though, the fraud is discovered and she is repudiated by her husband and forced to flee to France. Following this trauma she becomes severely anorexic. The latter example, Dangarembga’s Nervous Conditions (1988), is the story of a young Zimbabwean girl who leaves her country to go and study in England. Cut from her ancestral roots, Nyasha ends up feeling a stranger everywhere, as she is neither British, nor African. Anorexia radically problematises her fragmentation; it is a coping mechanism, albeit inappropriate. In their writings, both authors manage to reconcile their conflicting identities. Kherbiche writes a diary – known as a western kind of genre – suffused with Arabian motifs, such as light and music, while Dangarembga produces a text that fits in her African tradition of storytelling, i.e. an allegory peppered with shona words.
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Another example is the novel There Is a Tide (1990). Mauritian author Lindsey Collen brings forward the testimony of a young anorexic woman whose pathology derives both from family and cultural problems, among which the Americanisation of her island.35 A number of texts exist across postcolonial literature, some of which figure anorexia as a hunger strike, a social syndrome, or even a search for the sacred. Notwithstanding the difficulties of comparing texts from a diversity of cultural backgrounds, there nevertheless exists a common ground to analyse them. This joint fabric is writing itself, made of textual and corporeal “regimes of signs” intertwined to form a body of evidence.36 4.
Writing Size Zero All texts testify to the coalescence of fluxes which make up the anorexic experience. Three subcategories can be delineated on the basis of the multicultural corpus. A first category, which I call renunciation / disincarnation, consists of texts produced by women still in the throes of anorexia. The writing is opaque, schizophrenic, fragmented; there is an abundant use of different pronouns and impersonal sentences. These texts are rather impenetrable and confusing for the reader. A second group, entitled enunciation / incarnation, gathers testimonies written by women mostly in their recovery process. They typically use the pronoun “I,” a sign that they have regained their subjectivities. Finally, the third category, denunciation / reincarnation, is composed of texts where a certain distance is being taken from anorexia. The authors resort to third person pronouns, as if to keep the pathology at bay. Australian author Fiona Place’s Cardboard (1989) stands as a good example of the first category. Her text is about the reminiscences of an anorexic young girl named Lucy, who confesses how “frightened and withdrawn” she felt while in the midst of events she was unable to control.37 Her text offers several clues as to the enigma of anorexia. First, there may exist a biological predisposition to develop the condition. Place actually anticipates the latest developments in the medical field, by putting forward a physiological factor triggering anorexia. Indeed, scientists today show an increasing concern for the deficiencies of neurotransmitters in the aetiology of self-starvation. Second, her pathology shares similarities with schizophrenia, which supports the hypothesis that anorexia is a language problem too. In a few straightforward words, the narrator Lucy announces her decision to starve: It was then that I decided to stop eating altogether. to ward off Panic38 Place is very critical of the medical jargon that is “a linguistic straightjacket” which tends to standardise or universalise the pathology. 39 She is in fact the only author to point out that physiological reasons play a
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part in the onset of anorexia. While on a trip from Australia to England, a trip that was like a maturity test which involved leaving her family behind her, she had an ulcer, lost blood, and ended up in intensive care. As a doctor told her later, she consequently deceived herself into thinking that separating from her mother meant dying. Both events – ulcer and bleeding – are common symptoms of a panic attack, which then led to selfstarvation. Indeed, anorexia is for Lucy the inevitable response to “fear [that] ate at [her] constantly.”40 According to Doctor Walter Kaye, renouncing food may be a way for anorexics to fend off panic since fasting reduces the levels of serotonin in the brain, which is a powerful mediator of emotions and judgment. As malnutrition is known to affect brain chemistry, the resulting imbalance may lead to eating problems.41 Julia Kristeva explains that those who suffer from “maladies of the soul” have difficulties structuring themselves.42 As they cannot symbolise, they represent through their bodies. By resorting to a creative process that mingles flesh and words, it would then possible for anorexics to “figure” rather than represent their experience. Through the voice of Lucy, Fiona Place identifies the pathology as a language problem. At some point, she develops a fear of words and letters. These may be called “physiograms,” or units in which flesh and words coagulate and reveal the essence of her condition. These “physiograms” constitute the yardstick to read the grammatology of anorexia. By way of illustration, Place writes that: she got to the stage where she was scared of the letter e E for employment E for existence E for ego little e’s were jumping up and down before her eyes every minute of the day43 We notice that Lucy’s ego is completely broken, torn apart, as she topples over into a world where her perception of reality is altered and her apprehension of language becomes irrational. Lucy is thus both afraid of food and language – “[t]he e was nearly choking [her] to death.”44 In
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Place’s text, the narrator clearly suffers from a depersonalisation which leads to a schizoid fragmentation. Lucy’s food and word phobias are also concurrent with her hearing voices, bouts of madness and delusions: The food wouldn’t stop screaming. The neat little nuclear family of edibles stared white into white. The vegetables linked forces with the fish, the apple pie serenaded the icecream and the yoghurt nestled healthily next to the over-ripe banana. The rest of the food glared beadily up at me, but I refused to be sucked in.45 Janusz Wróbel describes schizophrenic language as “a separate linguistic system,” which is opaque and difficult to understand.46 This particular idiom is mired in neologisms, metaphors, and chains of associations. The hallucinations show that ego, food and language conflate in a very tight knot, and Lucy resorts to new words of her own making to share her experience of living in the obsessive anorexic world: She parch onion lipped one tired evening that she was no longer my mother. She gave me a cool fisheyed look and opened the fridge door to get out her own dinner.47 As Wróbel notes, neologisms and free punctuation characterise schizophrenic language. Place’s reshaping and reformatting of English is a strategy to suit her anorexic experience. Indeed, Wróbel shows that, at least in the case of schizophrenia, there is an adaptation of language to experience, and not the opposite. By infusing the language with new and “sensory-pictorial” words, Place makes her pathology palpable for the reader and indicates that she is in an altered state of consciousness.48 Other means are used to convey the idea of fragmentation. For instance, she writes either in prose or poetry, or she uses italics and bold types to show her awareness that language is made of different subtexts, some of which she cannot grasp. Finally, she changes perspectives, using first and third person pronouns, as well as odd and eccentric punctuation, either hyphens or slashes, as if to test the elasticity of language, exactly as she tortures her body. For one thing, Place’s claim that anorexia is “first and foremost a language problem” emphasises the fact that her condition is constitutive of the speaking subject in a particular social and cultural context. And for another, she suggests that the clinical discourse tends to be reductive as it homogenises subjectivities. In other words, she denounces the patients’
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dependence on physicians and experts who may ignore or play down the variety of anorexic experiences. As Bray explains, “Place argues that the clinical definition of anorexia nervosa creates the identity of the subject who practises self-starvation by excluding everyday language: any other understanding of the anorexic’s identity is marginalized.”49 Or, to put it differently, Place’s reminiscences provide not only a guiding framework to capture anorexia from within, but they also show the relevance of experiential writing by taking issue with some therapeutic practices. Surely there are various forms of anorexia, all of which engage with a diverse range of problems. While some anorexics deliberately embark on a hunger strike against any kind of authority, others respond to an unnameable trauma, have psychosomatic reactions, suffer from the consequences of physical injury, do penance because of religious ideals, or go on a starvation diet amid contradictory messages from the consumer society. All these facets touch up the portrait of the anorexic person. As Helen Malson rightfully notes, there is a “fictioning” of various “anorexias,” which is attributable to the interdisciplinarity of a thoughtprovoking subject matter.50 The many interpretations that have emerged, while adding up to the confusion, are also crucial to understand the phenomenon and, most importantly, help those for whom anorexia has become a way of life. 5.
Curative Cultures Literary texts on anorexia come out from all parts of the globe, and all of them contribute to our understanding of the pathology, be they first- or third-person accounts. Liliane Atlan’s allegory from France (The Passersby, 1988), Candia McWilliam’s thriller from Scotland (A Little Stranger, 1989), Jenefer Shute’s autobiography from Britain (Life-Size, 1992), Shelley Davidow’s tale from South Africa (All Anna’s Children, 1996), Erin Soros’s autothanatography from Canada (Giving Death, 1998), or Marya Hornbacher’s memoirs from the United States (Wasted, 1998), are just a few examples which all reveal a unique aspect of selfstarvation. It is unclear, however, if all these authors write subjectively about a pathology which is or was their own at some point in time. But at least they are all serving the purpose of sharing an experience and, hopefully, saving lives. Literature can be a constructive tool when it comes to healing such as Shelley Davidow’s tale, which takes place in South Africa. Emily starves herself for lack of maternal care and finally finds comfort far from the city, on a Zulu farm, in the company of a witch doctor. Similarly, young Nyasha encountered earlier in the novel Nervous Conditions, takes advice from both white psychiatrists and her African family. A similar pattern is observable in There Is a Tide, by Lindsey Collen, where Shynee manages to pull herself together both by consulting a regular therapist, but also by reconnecting with her past thanks to an old midwife-cum-
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storyteller. In postcolonial studies, and more precisely when she addresses “transculturation,” Françoise Lionnet calls for the invention of “a new vocabulary for describing patterns of influence that are never unidirectional.”51 Her invitation makes all the more sense when it comes to health, where holistic models should both combine global phenomena and locally entrenched practices. Similarly, Homi Bhabha pleads for the creation of a third or in-between space of enunciation, where hybridity can be built upon and cultural difference be celebrated. 52 This interaction or métissage, to use another of Lionnet’s terms, is in keeping with the latest developments in ethnopsychiatry. Indeed, researchers like Tobie Nathan, Isabelle Stengers, and Philippe Andréa all insist that interdisciplinarity should be the key to better healing practises. Biology, anthropology, psychology should progress together in the same direction in a complementary rather than competitive manner.53 Like Bhabha, they claim that difference is an asset. It certainly is when it comes to creating “curative cultures” as advocated by Katzman and Lee, who recommend that religious and political aspects be integrated to understand self-starvation across cultures.54 Literature can also contribute to the discussion as it provides a fertile terrain for experimentation and is what Kristeva calls “the missing link” of human sciences. As literary texts deal with “the process of meaning within language and ideology,” they should be investigated “as the object of a possible knowledge.”55 Although anorexia is a lethal pathology, “Writing Size Zero” is an ethical process. By appending a message to their experience, the authors make sense of their pathology and significantly contribute to the creation of new epistemologies. The abundant research so far has paradoxically complicated our understanding of anorexia, while treatment has remained highly unsatisfactory. But as some authors stipulate, writing, i.e. laying out letters, building up words and sentences, constructing a plot, can help pull oneself together. Anorexics have a counterintuitive position in that they struggle to repair a disjunction that happened at some point in their lives by substituting words for food, and food for words. The challenge remains, however, to channel these fluxes without being overwhelmed by the morbid dynamics of anorexia. One should not fail to consider that starvation and a ruined health constantly threaten anorexics. The creative process, though, is a good incentive to expand curative cultures. “Writing Size Zero” is a gift of life.
Notes 1 Maud Ellmann, The Hunger Artists: Starving, Writing, and Imprisonment (Cambridge, Massachusetts: Harvard University Press, 1993), 17. 2 Joan Jacobs Brumberg, Fasting Girls: The History of Anorexia Nervosa (New York: Vintage, 2000), 164.
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3 Jean Baudrillard, The Consumer Society, trans. Chris Turner, (London: Sage Publications, 2002), 142-143. 4 Pierre Beumont, David Garner and Stephen Touyz, “Diagnoses of Eating or Dieting Disorders: What May We Learn from Past Mistakes?” International Journal of Eating Disorders 16:4 (1994): 349-362. 5 Hilde Bruch, Eating Disorders (New York: Basic Books, 1973). 6 Georges Canguilhem, Le Normal et le pathologique (Paris: Presses Universitaires de France, 1999), 85, 12. My translation. 7 Jean Kestemberg, Évelyne Kestemberg, and Simone Decobert, La Faim et le corps (Paris: Presses Universitaires de France, 1994), 14; Brumberg, 45-46, 104-107. 8 Rudolph Bell, Holy Anorexia (Chicago: Chicago University Press, 1985), 8, 150. 9 Elaine Showalter, Hystories: Hysterical Epidemics and Modern Culture (London: Picador, 1998), 17-20. 10 Caroline Walker Bynum, Holy Feast and Holy Fast: The Religious Significance of Food to Medieval Women (Berkeley and Los Angeles: University of California Press, 1988), 197. 11 Brumberg, 43-61. 12 Caroline Giles Banks, “‘Culture’ in Culture-Bound Syndromes: The Case of Anorexia Nervosa,” Social Science and Medicine 34:8 (1992): 867-884; “The imaginative use of religious symbols in subjective experiences of anorexia nervosa,” Psychoanalytic Review 84:2 (1997): 227-236; “‘There Is No Fat in Heaven’: Religious Asceticism and the Meaning of Anorexia Nervosa,” Ethos 24:1 (1996): 107-135. For the overrepresentation of anorexia in the Jewish population, see Thomas Silber, “Anorexia Nervosa in Blacks and Hispanics,” International Journal of Eating Disorders 5:1 (1986): 121-128. 13 Ellmann, 14. 14 Jacques Maître, Anorexies religieuses, anorexies mentales: essai de psychanalyse sociohistorique (Paris: Éditions du Cerf, 2000), 13. My translation. 15 Canguilhem, 155. My translation. 16 Abigail Bray, “The Anorexic Body,” Cultural Studies 10:3 (1996): 413-429. 17 Beumont, et al. 18 For the latest research on anorexia, see for instance David Collier and Janet Treasure, “The aetiology of eating disorders,” The British Journal of Psychiatry 185 (2004): 363-365. 19 Anna Krugovoy Silver, Victorian Literature and the Anorexic Body (Cambridge: Cambridge University Press, 2004), 11. 20 In their critical work on Kafka, Deleuze and Guattari write that “writing transform[s] words into things capable of competing with food … To speak, and above all to write, is to fast.” See Gilles Deleuze and
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Félix Guattari, Toward a Minor Literature (Minneapolis: University of Minnesota Press, 1986), 20. 21 Gilles Deleuze and Claire Parnet, Dialogues II, trans. Hugh Tomlinson and Barbara Habberjam (New York: Columbia University Press, 2002), 111. 22 Deleuze & Parnet, 51. 23 André Gide, So Be It; or, The Chips Are Down, trans. Justin O’Brien (New York: Knopf, 1959), 5. Quoted in Ellmann, 26. 24 Ellmann, 8. 25 Quoted in Mark Anderson, “Anorexia and Modernism, or How I Learned to Diet in All Directions,” Discourse 11:1 (1988-1989): 32. 26 Isak Dinesen, Letters from Africa: 1914-1931, ed. Frans Lasson, trans. Anne Born (Chicago: University of Chicago Press, 1981), 381, quoted in Judith Thurman, Isak Dinesen: The Life of a Storyteller (New York: Picador, 1995), 66. 27 Leslie Heywood, Dedication to Hunger: The Anorexic Aesthetic in Modern Culture (Berkeley: University of California Press, 1996). 28 Ellmann, 27. Author’s emphasis. 29 Roland Barthes, The Pleasure of the Text, trans. Richard Miller (New York: Hill & Wang, 1999), 37. 30 Chantal Chawaf, “Linguistic Flesh,” trans. Yvonne Rochette-Ozzello, in New French Feminisms: An Anthology, ed. Elaine Marks and Isabelle de Courtviron (Amherst: University of Massachusetts Press, 1980), 177178. 31 Abigail Bray and Claire Colebrook, “The Haunted Flesh: Corporeal Feminism and the Politics of (Dis)Embodiment,” Signs 24:1 (1998): 37. 32 Ibid., 57. 33 Roland Barthes, 56-57. 34 Sabrina Kherbiche, La Suture (Algiers: Laphomic, 1993); Tsitsi Dangarembga, Nervous Conditions (Seattle: Seal Press, 1989). 35 Lindsey Collen, There Is a Tide (Port-Louis, Mauritius: Ledykasion pu Travayer), 1990. See also Françoise Lionnet, “‘She breastfed reluctance into me’: Hunger Artists in the Global Economy,” in Women, Culture, and Practices of Development, eds. Celeste Schenck and Susan Perry (London: Zed Press, 2001), 214-234. 36 Deleuze and Parnet, 111. 37 Fiona Place, Cardboard (Sidney, University of New South Wales: Local Consumptions Publications, 1989), 24. Author’s emphasis. 38 Ibid., 153. 39 Ibid., 162. 40 Ibid., 39. 41 Bernie Devlin, et al., “Linkage analysis of anorexia nervosa incorporating behavioural covariates,” Human Molecular Genetics 11:6 (2002): 689-696.
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42 Julia Kristeva, New Maladies of the Soul, trans. Ross Guberman (New York: Columbia University Press, 1995). 43 Place, 16 44 Ibid., 71. 45 Ibid., 41, 45. 46 Janusz Wróbel, Language and Schizophrenia (Amsterdam and Philadelphia: John Benjamin Publishing Company, 1990), 4. 47 Place, 3. My emphasis. 48 Wróbel, 15. 49 Bray, 424. 50 Helen Malson, The Thin Woman: Feminism, Post-Structuralism, and the Social Psychology of Anorexia Nervosa (London & New York: Routledge, 1995), 97. 51 Françoise Lionnet, Postcolonial Representations: Women, Literature, Identity (Ithaca and London: Cornell University Press, 1995), 11. 52 Homi Bhabha, The Location of Culture (London and New York: Routledge, 1994), 1-2, 7. 53 Tobie Nathan, et al., “Une ethnopsychiatrie de la schizophrénie ?” Ethnopsy 1 (2000): 9-43. 54 Melanie Katzman and Sing Lee, “Beyond Body Image: The Integration of Feminist and Transcultural Theories in the Understanding of Self Starvation,” International Journal of Eatings Disorders 22:4 (1997): 385-894. 55 Julia Kristeva, Desire in Language: A Semiotic Approach to Literature and Art, ed. Leon S. Roudiez, trans. Thomas Gora, Alice Jardin, and Leon S. Roudiez (New York: Columbia University Press, 1980), 98.
Bibliography Anderson, Mark. “Anorexia and Modernism, or How I Learned to Diet in All Directions.” Discourse 11:1 (1988-1989): 28-41. Atlan, Liliane. The Passersby, trans. Rochelle Owens, illustr. Lisa Desimini. New York: H. Holt, Edge Books, 1993. Banks, Caroline Giles. “‘Culture’ in Culture-Bound Syndromes: The Case of Anorexia Nervosa.” Social Science and Medicine 34:8 (1992): 867-884. __________. “‘There Is No Fat in Heaven’: Religious Asceticism and the Meaning of Anorexia Nervosa.” Ethos 24:1 (1996): 107-135.
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__________. “The imaginative use of religious symbols in subjective experiences of anorexia nervosa.” Psychoanalytic Review 84:2 (1997): 227-236. Barthes, Roland. The Pleasure of the Text, trans. Richard Miller. New York: Hill & Wang, 1999 (1975). Baudrillard, Jean. The Consumer Society, trans. Chris Turner. London: Sage Publications, 2002 (1998). Bell, Rudolph. Holy Anorexia. Chicago: Chicago University Press, 1985. Beumont, Pierre, et al. “Diagnoses of Eating or Dieting Disorders: What May We Learn from Past Mistakes?” International Journal of Eating Disorders 16:4 (1994): 349-362. Bhabha, Homi. The Location of Culture. London and New York: Routledge, 1994. Bray, Abigail. “The Anorexic Body.” Cultural Studies 10:3 (1996): 413429. __________, and Colebrook, Claire. “The Haunted Flesh: Corporeal Feminism and the Politics of (Dis)Embodiment.” Signs 24:1 (1998): 3767. Bruch, Hilde. Eating Disorders. New York: Basic Books, 1973. Brumberg, Joan Jacobs. Fasting Girls: The History of Anorexia Nervosa. New York: Vintage, 2000 (Cambridge, Massachusetts: Cambridge University Press, 1988). Bynum, Carolyn Walker. Holy Feast and Holy Fast: The Religious Significance of Food to Medieval Women. Berkeley and Los Angeles: University of California Press, 1988 (1987). Canguilhem, Georges. Le Normal et le pathologique. Paris: Presses Universitaires de France, 1999 (1966). Chawaf, Chantal. “Linguistic Flesh.” In New French Feminisms: An Anthology, edited by Elaine Marks and Isabelle de Courtviron. Amherst: University of Massachusetts Press, 1980, 177-178. Originally published as “La Chair linguistique.” Les Nouvelles Littéraires 2534 (1976): 18.
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Collen, Lindsey. There Is a Tide. Port-Louis, Mauritius: Ledykasion pu Travayer, 1990. Collier, David, and Treasure, Janet. “The aetiology of eating disorders.” The British Journal of Psychiatry 185 (2004): 363-365. Dangarembga, Tsitsi. Nervous Conditions. Seattle: Seal Press, 1989 (London: the Women’s Press, 1988). Davidow, Shelley. All Anna’s Children. Cape Town: Tafelberg, 1996. Deleuze, Gilles, and Guattari, Félix. Toward a Minor Literature. Minneapolis: University of Minnesota Press, 1986. __________, and Parnet, Claire. Dialogues II, trans. Hugh Tomlinson and Barbara Habberjam. New York: Columbia University Press, 2002 (1987). Devlin, Bernie, et al. “Linkage analysis of anorexia nervosa incorporating behavioural covariates.” Human Molecular Genetics 11:6 (2002): 689696. Dinesen, Isak. Letters from Africa: 1914-1931, edited by Frans Lasson, trans. Anne Born. Chicago: University of Chicago Press, 1981. Ellmann, Maud. The Hunger Artists: Starving, Writing, and Imprisonment. Cambridge, Massachusetts: Harvard University Press, 1993. Frega, Donalle. Speaking in Hunger: Gender, Discourse, Consumption in Clarissa. Columbia: South Carolina Press, 1998.
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Gide, André. So Be It; or, The Chips Are Down, trans. Justin O’Brien. New York: Knopf, 1959. Heywood, Leslie. Dedication to Hunger: The Anorexic Aesthetic in Modern Culture. Berkeley: University of California Press, 1996. Hornbacher, Marya. Wasted. New York: Harper Flamingo, 1998. Katzman, Melanie, and Lee, Sing. “Beyond Body Image: The Integration of Feminist and Transcultural Theories in the Understanding of Self Starvation.” International Journal of Eatings Disorders 22:4 (1997): 385894. Kestemberg, Jean, et al. La Faim et le corps. Paris: Presses Universitaires de France, 1994 (1972).
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Kherbiche, Sabrina. La Suture. Algiers: Laphomic, 1993. Kristeva, Julia. New Maladies of the Soul, trans. Ross Guberman. New York: Columbia University Press, 1995. __________. Desire in Language: A Semiotic Approach to Literature and Art, edited by Leon S. Roudiez, trans. Thomas Gora, Alice Jardin, and Leon S. Roudiez. New York: Columbia University Press, 1980. Lionnet, Françoise. Postcolonial Representations: Women, Literature, Identity. Ithaca and London: Cornell University Press, 1995. __________. “‘She breastfed reluctance into me’: Hunger Artists in the Global Economy.” In Women, Culture, and Practices of Development, edited by Celeste Schenck and Susan Perry. London: Zed Press, 2001, 214-234. Maître, Jacques. Anorexies religieuses, anorexies mentales: essai de psychanalyse sociohistorique. Paris: Éditions du Cerf, 2000. Malson, Helen. The Thin Woman: Feminism, Post-Structuralism, and the Social Psychology of Anorexia Nervosa. London & New York: Routledge, 1995. McWilliam, Candia. A Little Stranger. London: Bloomsbury, 1989. Nathan, Tobie, et al. “Une ethnopsychiatrie de la schizophrénie ?” Ethnopsy 1 (2000): 9-43. Place, Fiona. Cardboard. Sidney, University of New South Wales: Local Consumptions Publications, 1989. Showalter, Elaine. Hystories: Hysterical Epidemics and Modern Culture. London: Picador, 1998 (New York: Columbia University Press, 1997). Sceats, Sarah. Food, Consumption and the Body in Contemporary Women’s Fiction. Cambridge: Cambridge University Press, 2000. Shute, Jenefer. Life-Size. London: Minerva, 1995 (Martin Secker & Warburg, 1992). Silber, Thomas. “Anorexia Nervosa in Blacks and Hispanics.” International Journal of Eating Disorders 5:1 (1986): 121-128.
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Silver, Anna Krugovoy. Victorian Literature and the Anorexic Body. Cambridge: Cambridge University Press, 2004. Soros, Erin. “If You Die It Will Kill Me.” In Redefining Motherhood: Changing Identities and Patterns, edited by Shanon Abbey and Andrea O’Reilly. Toronto: Second Story Press, 1998, 227-243. Also published as “Giving Death.” Differences: A Journal of Feminist Cultural Studies 10:1 (1998): 1-29. Thurman, Judith. Isak Dinesen: The Life of a Storytelle. New York: Picador, 1995. Wróbel, Janusz. Language and Schizophrenia. Amsterdam Philadelphia: John Benjamin Publishing Company, 1990.
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Note on Contributor Isabelle Meuret is a Lecturer of English at the Free University of Brussels, and is the author of L’Anorexie créatrice (Paris: Klincksieck, 2006).
Devils, Serpents, Zebras: Metaphors of Illness in Contemporary Swedish Literature on Eating Disorders Katarina Bernhardsson Abstract The present paper explores the metaphors of illness in Swedish narratives on eating disorders, published between 1987 and 2005. The authors use the metaphors of powerful beings such as serpents or devils to name their illness, and these metaphors can be analysed as being part of the master metaphors of battle, territory and intruders. This paper discusses the metaphors used to envision the flesh and the self, as well as three important “intruders”: compulsive starvation, food, and the urge to eat. Keywords: Metaphors of illness, eating disorders, anorexia, bulimia, Swedish literature. 1.
Introduction “I lost weight, and the more I lost, the larger the serpent inside me grew. It took over me, it took over my thoughts.”1
Metaphoric thinking is fundamental to the human mind, and when faced with a crisis such as being struck by illness, thinking in metaphors can become an important way of coping with the situation. Metaphors are used to deal with the illness and assign meaning to it, but additionally they have a communicative function, in that they help to explain the experience of illness to others. Thorough metaphors or mythical structures are commonly found in pathographies, as Anne Hunsaker Hawkins has shown in her study Reconstructing Illness. Studies in Pathography (1999).2 In this paper, I will discuss the metaphors used to handle and communicate the experience of eating disorders in contemporary Swedish literature. I group these metaphors under the master metaphors of battle and the body as a territory, and the concept of intruders. In this paper, I examine a group of books where the dominant theme is the protagonist (a girl or a young woman) developing an eating disorder. This corpus of books has appeared in Sweden during the last two decades. The first full-length novel, Evelyn Spöke (Evelyn Ghost), was published in 1987, and the most recent, Ludenben (Hairylegs), in 2005. In between, roughly twenty books have been published on the topic, by critics often labelled as a new “subgenre”. The books are from different
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kinds of publishers; half of those considered here are published by leading Swedish publishing houses, and half by small, local publishers or author cooperatives. The emergence of this new literary subgenre is thus neither directed nor suppressed by the leading publishers. It rather seems to express something that a large amount of young women need to communicate. Some of the authors meet the requirements of the established publishers, while many of those who do not seek other ways of being published.3 This paper examines thirteen of these books about the experience of eating disorders. The books are predominantly written by young women in their twenties, are often their literary début and, in several cases, are their only book. Two of them differ because they are retrospective and were written by authors who are national celebrities.4 Some of the books are pathographies, some are novels, and some dwell on the border between the two genres. Regardless of genre, they all have stated autobiographical background, shown either by the text itself and its paratexts, or by the presentations in book catalogues and interviews in the press.5 The books are written from the ill girl’s own perspective, a stance that may at times appear distorted or alien to the reader. In several of the books, whether they are pathographies or novels, the protagonist shares her name with the author, indicating an intention to have the book read as an authentic narration. I want to stress that when I use a name, or “she”, I refer to the character (who is also in most cases the narrator), and not to the actual author. There are of course problems to consider when discussing literary works as an expression of actual experiences. With regard to these books, the authors, regardless of genre, state that their aim is to make the reader understand the illness described. I thus presuppose that the authors’ intention to describe the mental world of the illness means that they use metaphors they have found functional, i.e. suitable to organise the experience and to communicate it to a reading audience. This means that I will explore these metaphors as actually used for understanding and communicating the illness. A not uncommon analysis of the illness anorexia is that the body of an anorexic person is displaying a kind of metaphoric language, through the silent body. In this paper, I am not primarily interested in this type of metaphor but rather in the consciously chosen verbal metaphors that the narrators use in their written account of the illness. The types of eating disorders depicted in these books range from anorexia to bulimia and binge eating. Most common is a combination of anorexic and bulimic behaviour, for example an anorexic who after a while also starts to eat and vomit in bulimic fashion. There is also a high rate of self-mutilation and cutting in the books. Greta Olson writes, in her 2003 study Reading Eating Disorders: Writings on Bulimia and Anorexia as Confessions of American Culture, that in an American context, there
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has not yet emerged full length depictions of either bulimia or selfmutilation.6 In Sweden, however, the case is quite different. Half of the books in my material contain bulimic behaviour, and several include selfmutilation. Apart from the books I study here, there are also Swedish contemporary books primarily focused on self-mutilation. Good examples are Vingklippt ängel (Angel with Clipped Wings, 2004), where Berny Pålsson – who after the publication of her book turned into a dark teenage idol – writes about her life as a self-mutilating schizophrenic, and Gertrud Hellbrand’s poetic novel Vinthunden (The Greyhound, 2004), a tale of self-mutilation and female masochism which, to my knowledge, is unprecedented in Swedish literature in its explicit dealing with the disgust of being trapped in a female body.7 2.
Metaphors of battle, territory and intruders The all-embracing metaphor I have found to be structuring the narratives on eating disorders is derived from what American literary scholar Anne Hunsaker Hawkins calls “The Battle Myth.”8 According to Hawkins, this is one of the most common structures used in illness narratives, and it incorporates the use of metaphors like intruders, attacks, allies, sides, enemies, war, and threats. The battle myth is, as Hawkins demonstrates, common in narratives about for example AIDS, and it can be regarded as a quite logical structure in the context of our contemporary medical discourse, where medicine combats infectious diseases with chemical weapons, allied with our own immune defence. Hawkins views the militaristic way of envisioning treatment in light of what she calls “[t]he ‘mythogenic’ habit in Western culture of thinking in oppositions and in contraries” – an approach that makes us picture health as light and good, illness as dark and evil.9 “At this point,” Hawkins writes, “the relevance of the hero battling monsters or the cosmic battle between divine and diabolic forces becomes obvious.”10 This battle against monsters is a common feature also in the Swedish books on eating disorders, and it is indeed possible to say that the fact that the authors so often personify their illness as a living creature implies the underlying use of the battle myth. However, I want to argue that in the case of narratives about eating disorders, the battle myth is partially transformed in comparison with its use in the context of somatic illnesses. In a cancer narrative, for example, the illness can be regarded as an enemy and the doctor and the patient can become allies in the battle against it. Here, metaphors as enemies, attacks, and the (immune) defence are comparatively unambiguous. The cancer patient rarely identifies with the illness. The anorexic, on the other hand, easily seems to regard the illness as a crucial part of her identity. The nameless narrator-protagonist in Som en månblomma (Like A Moon Flower, 2000) writes:
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Devils, Serpents, Zebras There is nothing I want more than you … coming in your big humming car, like the prince on his horse to save the poor princess from the horrible monster. … As perfect as in a fairy tale. It’s almost that perfect. Too bad I happen to be both princess and monster.11
In such a scenario, it is clear that the battle myth underlying the metaphor is not constructive. This theme of identification with the illness, of incorporating it and its negative patterns of thought as a part of the self, is strong in the books. I read the envisioning of monsters as an attempt to counteract that identification. By naming the illness as a monster, it can be viewed as something outside the self, or, at least, as a part of the self which is not the innermost core of identity. These monsters, or parts of the self, take charge of the young women and what they consider to be their true or inner self. It is possible to put it this way: In the narratives on eating disorders the battle has, just as in the somatic case, two fronts (represented by the doctor and the illness) but the patient has difficulties deciding which side she is on. She constantly switches sides, alternately identifying with and fighting for both parties; in one moment aligning herself with the illness against the whole world, in the next seeking to escape from the compulsions of the eating disorder. Another way to describe this relationship is to say that she, at least at times, becomes a passive participant in the battle; not just her body but also her self becomes the place where, and over which, the battle takes place. She becomes a territory instead of an agent, the agent part of her being suppressed, and the territory being threatened with invasion by intruders, both from the outside (doctors and nurses, parents, food) and from within (the illness taking charge).12 This loss of power and agency can clearly be seen in the metaphors used by the protagonist to describe her self: she pictures her inner self in weak images such as a faint whisper, a very small girl, a ghost, air, a citizen of a totalitarian state, a slave, or a puppet. In Den åpne kroppen. Om kjønnssymbolikk i moderne kultur (The Open Body: Symbolism of Gender in Modern Culture, 1998), Norwegian anthropologist Jorun Solheim discusses the metaphors she finds to be structuring our conception of the two sexes and, as a direct result of this, our very symbolic thinking. Her point is that even though metaphors about women, for example, are not true, they affect our world view and our way of thinking to the extent that they seem to be true, and we act as if they were true. Solheim points out how the culture of at least the Western world, views the female body as “the open body,” a body without boundaries, differentiated from the male, closed body. (Metaphorically speaking, of course, since no body is actually closed from the outside world. But the position, Solheim argues, is derived from what she calls the
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female body’s “anatomical ‘more-openness’”).13 The metaphors that describe women in our culture are, according to Solheim, “[f]ood that can be eaten, a field to be sown, a body that can be invaded.”14 The last part of this sentence comes close to what I have earlier described as the eatingdisordered young woman as a territory threatened to be invaded. According to Solheim, this is a foundational metaphor by which we think about women. It seems to be this image of the female that the protagonists try to distance themselves from, by desperately trying to close their bodies to the world outside. This is an act of refusal that only results in the outside world – primarily doctors and concerned parents – putting more force behind the attempted “invasion” of the young women’s bodies. Solheim suggests that the metaphors that capture the anorexic state best are “invasion” and “occupation”, and she adds that in general, “warmetaphors seem to be suitable.”15 Metaphors can, as Susan Sontag has pointed out in her classic study Illness as Metaphor, function as disabling and destructive images. This is true of the examples given above, where the female is associated with a lack of boundaries, which in extension can be read as open for contamination and contagion. Sontag is primarily interested in a societal context, where metaphors can be used to stigmatize the sick and where the word “cancer,” for example, too often is rhetorically used as a synonym for “evil”. Hawkins recognizes this negative usage of metaphors but argues that metaphors in themselves are neither enabling nor disabling. In this view, metaphors may, depending on how they are used, have either a positive or a negative function. I sympathize with Sontag’s cautioning against the overuse of metaphor; at the same time my reading of the books on eating disorders suggests that the authors seem to find the metaphors helpful for handling and communicating the illness. I believe it may be possible, in response to Sontag’s justified caution, to discern between metaphors that are mainly chosen by the ill person herself, and those which are primarily imposed on her by others.16 Sontag is also eloquently opposed to the use of military imagery, which she believes to be stigmatizing and over-mobilizing, and which may have dangerous consequences for a society’s view on repression of the different and “unhealthy.”17 Despite this, the narrators in the novels under consideration seem to have a special preference for using metaphors of battle. Is it possible for these metaphors to be enabling and not destructive for an eating-disordered young woman? My reading suggests that it may, but for this to be true it seems to be crucial for her to cease to identify herself with the illness and instead envision it as something, or someone, separated from her self. As long as she views the eating-disordered behaviour as part of her self, the battle myth is counterproductive and makes her experience every attack on the illness as an attack on herself. Thus, the creation of some kind of creature or being as a metaphor for the illness behaviour – which is so dominant in the books I
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am studying – seems to serve the purpose of making the battle myth an enabling structure, creating an enemy that is separated from her image of her self.18 In these books the metaphors allude to strikingly powerful entities of evil, like devils and serpents, and the metaphors are generally considerably grander in the pathographies than in the novels. Presumably the vividness of the metaphors, and the evil they portray, help the author to dissociate herself from her illness more thoroughly. My claim is thus that the all-embracing metaphor in the books on eating disorders is the concept of territory and, closely linked to this, the concept of the intruder, i.e. the body and mind as a territory threatened by intruders and invaders, enemies both from within and from outside. The territory becomes a battle field, where the fight stands between powers in the dichotomies good and evil, life and death, angels and devils, but in spite of the clear distinctions the protagonist does not find it easy to choose between them. Moreover, the “good” side, including doctors and parents struggling to keep the anorexic alive, are not infrequently depicted as almost as despotic as the eating disorder itself. Katarina, the protagonist in Ludenben, explicitly states that she starves herself, binge eats, gets drunk and eats pills “exactly to not let the real world take up space in me.”19 She chooses one kind of intruder, the self-inflicted and artificial, to take up her territorial space instead of the outer world, which is seen as too painful. In the rest of this paper I will discuss the metaphors used to envision the flesh and the self as well as three important “intruders,” namely, the compulsion to starve, food and the urge to eat. 3.
The compulsion to starve In her study, Greta Olson notes that the American eatingdisordered young woman often projects her urge to eat onto an outside force, one that is frequently dangerous and supernatural.20 This is true of the works under consideration, too, but here the most prominent supernatural forces do not represent the urge to eat, but the compulsion not to eat. In the books, anorexia is metaphorically seen as a creature, alternating between being a part of a divided self and being a creature in its own right. This being may be another girl (“a mad girl” in the head, according to one of the narrators),21 it may be a harsh and punishing voice, but the most frequently used image is that of a revolting creature. Among these, the most common metaphor is the serpent. This metaphor is obviously permeating the book Ormen och jag (The Serpent and I, 1990), where the serpent is Lotta’s constant companion and she imagines it to be furious, scornful, and offended as well as controlling her. But the serpent plays an important role in several of the other books as well. The serpent wriggles inside the stomach as a protest against the attempts to force food into the protagonist. It fills the stomach and it sinks its poisonous fangs
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into Lotta. The metaphor incorporates the wriggling sensation in the hungry stomach as well as powerful associations of sin and evil, going all the way back to the temptation of Eve. The serpent in the narratives has a particular ability to pervert the protagonist’s perceptions, deluding her to interpret things incorrectly. The most prominent part of all these metaphors is the illness’s power to coerce the protagonist into doing things. It is the serpent, or one of its other incarnations, that is depicted as active: forcing the girl, ruling over her, lying to the people around her. Other names for it are the less powerful “Tangle,”22 or some kind of devilish or demonic name. In Zebraflickan (The Zebra Girl, 2004) it is called Lucifer, dictator and monster. The smaller the anorexic becomes, the larger the serpent or Lucifer grows and it is depicted as feeding on her and her self-starvation. Following the metaphor of territory discussed earlier, the creature within is alternately pictured as the protagonist’s ally (her only friend) and as an intruder. Evelyn in Evelyn Spöke describes the two sides of intruders fighting over her – the one forcing her to starve, the other to eat – and says that “Whatever I do, I disappear.”23 She cannot see an outcome where she can preserve her own self. Sofia in Zebraflickan is not only describing herself as having a monster or Lucifer inside, she expands this metaphor to bear on her friends and the rest of the outer world. She is conscious of the prevalent tendency to diet and envisions everybody carrying a monster on their shoulder, monsters with sharp claws and of different sizes, and with the ability to make other people’s monsters grow larger. Ana in Trösta mig aldrig med en karamell (Never Comfort Me With a Sweet, 1994) comments on her internal beast: “Exorcists would understand me better than all the medical men.”24 For Anna-Lena in Nej tack, jag åt nyss! (No Thanks, I’ve Just Eaten!, 1995), as for most of the bulimics and binge eaters, overeating is a development of an anorexic ideal, since she is constantly trying to starve herself, only to end up devouring large amounts of food instead. She envisions her anorexic thinking as a transparent, thin ballet dancer, a metaphor for the neat female ideal. The ballet dancer proves to be hard and skeletal and tries to strangle her in her bed. 4.
Food The invader that causes the most disgust is food, which is seen as something dirty and repulsive. The narrators show a constant inversion of values, where destructive metaphors are used for things normally seen as constructive. Elisabeth in I himlen får jag äta (I May Eat in Heaven, 2000) has completely inverted the values of food. She sees the calories as bacteria, which clearly associates them with invasion and destruction. Food, which is actually building up the body, instead becomes destructive. Or rather: even the very construction turns into destruction. Elisabeth
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thinks: “Soon the calories would reach the intestines and become parasites who make me swell up.”25 The picture of calories as parasites is entirely counter-intuitive. With the same inversion the protagonists see their selfannihilating life-style as a sign of them having “built up” their own life – a constructive metaphor used to describe the destructive life of slowly starving to death. The moral quality of food is acute for the narrators, who treat food in terms of sinfulness. Accordingly, the urge to eat is viewed as a fall, similar to the biblical fall from grace.26 This is a metaphor that Greta Olson also finds prevalent in American accounts of eating disorders.27 The dirtiness of food prompts the urge for purification following contact with it. Anna-Lena feels the compulsion to rub herself with pumice every time she has put something in her mouth, even if it is only coffee. Several of the girls finally do not dare even to eat an aspirin out of fear for the invading calories possibly hidden within it. The image is the complete shutting of the territory’s boundaries; food is an invader to keep watch against. Malva, the protagonist in Malva (Mallow, 2004), cannot simply throw away food in the kitchen bin, for the risk is too great that she will pick it up again and eat it anyway. To be certain to escape the hostile invader she has to disarm it; “render the food harmless – by pouring washing-up liquid on it,” thus making it inedible.28 Not only is food something to keep out, it is also an intruder to throw out, either by vomiting or taking a laxative. Several of the girls hide small bags of vomits, as well as portions of food that they do not want to eat, in hiding places all over their rooms. Karoline in Vissa föddes perfekta och andra som jag (Some Were Born Perfect, Others Like Me, 2002) has decided that one single thing is not sinful to eat: sweets with a salt liquorice flavour. As this sweet is not sold in most of Europe, and she at the time is a backpacker travelling by interrail through the continent, this does not make much difference. Seeing food as an evil intruder is linked to the protagonists’ notion that they, as pure selves, actually can live without food. As Greta Olson points out, this is a kind of magical thinking, and this magical thinking is often associated with food. The young women see themselves as getting fat after a single bite; Klara in Vårfrost (Spring Frost, 1995) goes outside to carefully exhale the smell of cooking, out of fear that the smell otherwise will “cling to her, become a film of fat under her skin.”29 Even the very smell of food is seen as a brutal invader of the pure and enclosed body. 5.
The urge to eat For the eating-disordered protagonists, hunger is also something they choose to dissociate themselves from. As in the case with the compulsion not to eat, such girls often picture themselves as passive – people to whom things just happen. When they “fall” and eat, the
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explanation is that the food or another person are the active agent, which is stressed by a tendency to shift the narration into a third person voice. In several of the books, hunger is depicted as a wild beast, tearing and clawing and “going berserk” in the stomach.30 The metaphor of the wild beast captures both the physical pains of hunger, associated with the claws and teeth of a beast, and the image of a predator savagely tearing its prey apart. Violence is thus linked to both hunger and eating, and also to imprisonment, since wild beasts tend to rage when caged. When Karoline desperately binges one time (again described as a fall from grace) it is not she who stuffs food into her mouth but rather the wild beast who is “frantically chewing swallowing.”31 Evelyn identifies strongly with the starving she-wolf she imagines having inside her, and at times she becomes the wolf: howling, running around in the moonlight and cutting her arms as if it were the she-wolf’s claws that hurt her. Something similar happens with Katarina, whose hunger takes the shape of “Ludenben,” which means “Hairylegs.” This metaphor captures the physical appearance of the anorexic, since one characteristic is that she develops more body hair. But it also alludes to a character in a Swedish children’s story, the ogre Ludenben, always hungry as a wolf, who devours four goats and in the end of the story bursts open so the goats are set free.32 This becomes her definition both as an anorexic, always hungry, and as a bulimic, actually outliving the hunger. This is a more negative symbol than the she-wolf, although they have many features in common. Ana uses a Swedish fairy tale, the story of the fox Mickel, who slips into the henhouse and cannot stop killing and eating the hens. When he wants to escape, he is too fat to get out of the henhouse, and has to wait inside for the farmer. Ana sees herself and other bulimics as gluttonous “Mickelinor”, i.e. female foxes, who cannot stop eating, and her answer to the urge is to have friends who can prevent the fox from ever entering the henhouse. The narratives about anorexia are typically asexual, as a result of the extreme closure of the bodily boundaries. The narratives where the protagonists are overeating, on the other hand, are not infrequently charged with sexual, sometimes violent, imagery. For Andrea in Pappa Pralin (Daddy Chocolate, 2002), the bulimic eating and the humiliating casual sexual intercourse seem to hold the same meaning as invasions of her body that she cannot hold back. In the narration about two young women, Anna-Lena and Karoline, the metaphor of rape is used for the binge eating and for inserting the fingers down the throat to provoke vomiting. The breakdown of the boundaries, either by overeating or by sexual intercourse, are metaphorically linked, as intrusions that threaten to force the young woman to once more become, to use Solheim’s words, “the open body.”
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The body and the self One of the most repulsive words for the protagonists in these texts is the word “swollen.” The thought of swelling up – becoming rotund and big, bursting like a bud, their fat overflowing – is their greatest fear. The word “swell” is heavily associated with concepts like ripening, fertility, pregnancy, femininity and life, all things that the anorexic tries to escape. Greta Olson calls it a “nearly universal” theme in literary accounts of eating disorders, “the profound disgust for female flesh.”33 Jorun Solheim describes the anorexic as part of an emotional climate where “femininity [is] a burden, a yoke. It is heavy and earth-bound, a material inertia that fills up and binds. She wants to be free and independent, which means unwomanly.”34 Many of the books dwell explicitly on the fear of becoming a woman, and several narrators doubly link swelling to food through the image of rising dough. The eating-disordered protagonists have clearly integrated the Cartesian split between body and soul into their world view. They see the body, separated from the self, and as a prison for the soul. They also put this split into the body itself, viewing the perceived body fat as a prison for a truer body form within, which can be shaped through starvation, like a sculptor moulds raw material. “[S]omewhere beneath all the fat there is beauty,” Malva thinks.35 “Just imagine escaping from this disgusting cocoon people call body.”36 The reaction to dissociate themselves from the body is common. When a doctor examines the emaciated body of Lina in När mörkret kom (When Darkness Came, 2000) she cannot identify with it. She writes: “The thing on the bunk is a lump of fat.”37 Karoline, too, speaks of her body as “inescapably mine, never me but mine.”38 “I want to step out of my body, stand next to it and proudly say: ‘This is how I used to look, this is me BEFORE’,” Evelyn writes.39 There is an intense focus on boundaries in the metaphors used about the protagonists themselves. They feel like they have brick walls surrounding them, seemingly impossible for anybody to climb, or as if a pane of glass or a bell jar separates them from others. Prison is a common metaphor, as well as the image that the protagonist would have to swim across a whole sea to get to the other side, where the healthy people live. Especially for the bulimics, the body’s boundaries are at times enlarged to incorporate their own apartment as well. It is an important action to lock the door and close out the outside world, to create their own space where they can eat and vomit. Behind the walls, the masques and what Sofia calls “the shield of illness,” the young women do not have any sense of their own self.40 They are defining themselves as absence: a nothing, a ghost or a hole to fill. “All I am now is a bottomless hole that has to be filled, has to be filled, has to be filled,” Ana writes.41 The self, in contrast to the body which is
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described as swelling, is shrinking and almost non-existent, in Camilla’s case only a faint whisper that she at times can hardly even hear. The common experience is that of not being seen. Several of the protagonists claim that for as long as they can remember, they have tried to be the perfect daughter or little girl. But they feel that any appreciation they have received has been for the surface, and no one ever looked behind it. Katarina suggests that her self is entirely created through other people’s judgments and attention: “Without their gazes over my body I had nothing I could call me. I was air rather than a ghost.”42 Finally, Sofia uses a metaphor of her self that has no parallel in the other books. She is the protagonist with the most extreme selfmutilatory tendencies: she cuts herself, pours acid into her mouth which partially makes her tongue dissolve, and once she manages to hang herself in her room although a nurse is present. The metaphor Sofia uses to describe herself is the black and white zebra. The zebra is an image of her mix of light and darkness, her normal self and her destructive self. It also captures her striped arms, striped as a result of her cutting herself. The metaphor continues through the pathography, until the end where Sofia writes that she is on her way to become a zebra without stripes, as the scars are fading and becoming less visible than before and the destructive self no longer is allowed to dominate her. She actively tries to replace the identity of the ill girl, the Zebra girl, with a new identity of the girl who “had been ill but was fighting to recover.”43 Zebraflickan thus ends, as indeed most of the pathographies do, on a hopeful note. 7.
Conclusion: The voice of the narrator I want to conclude this paper by questioning some of the assumptions that may be drawn out of the metaphors I have found when examining narratives on eating disorders. I have shown how the protagonist, who is also the narrator in most cases, tends to define the illness as a monster, and herself as absence, nothing or next to nothing, air or a faint whisper, and I have shown that a great deal of the metaphors used are suggesting passivity, especially the underlying notion of being a territory dominated by agents separated from the self. The very starvation can be seen, and is indeed often seen, as an attempt to take up as little space as possible in the world and to recede to a state of childhood. All this is true of the books I am examining. But at the same time something in this rings false. There is something in the books that is the opposite of this: strong, active, demanding, sometimes angry, and taking up space without apologizing for it. That is the voice of the narrator. At the same time as the protagonist-narrator tells the story of a passive young woman, unsure of herself, she takes charge of the narration without hesitating. She tells the story from the young woman’s perspective, acknowledging the right of her point of view. There are many things worth considering about the narrator, for example the distance in
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emotion and knowledge between the first person-narrator, narrating in retrospect, and the protagonist she is telling about. The difference is often acute, especially when the protagonist is defending a life style the narrator in retrospect is disclaiming, and a closer analysis of this may serve to change the perception of some of the metaphors I have here unearthed. I wrote earlier that most of the pathographies end in a state of hope. Moreover, the very narration of the story – the claim to the privilege of narration and the confidence in having something important to convey – can in itself be seen as striking a hopeful tone.44
Notes 1 “Jag minskade i vikt och ju mer jag minskade, desto större blev ormen
inombords, den tog över mig, den tog över mina tankar.” Ann-Charlott Daher Larsson, Ormen och jag [The Serpent and I] (Stockholm: Atlantis, 1990), 8. All translations to English are my own. Since the titles of the books tend to have symbolically illuminating names, I have chosen to translate them to English in brackets after the Swedish title. 2 In using the word “pathography” I follow Hawkins, who defines the term as referring to “an autobiographical or biographical narrative about an experience of illness”. Anne Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography (Indiana: Purdue University Press, 1999), 229, note 1. There is some disagreement about how to use the expression. G. Thomas Couser, for example, reserves “pathography” for the biographical narratives, and uses “autopathography” for the autobiographical narratives. G. Thomas Couser, Recovering Bodies: Illness, Disability and Life-writing (Wisconsin: The University of Wisconsin Press, 1997). While Couser has a point in specifying the term, for the purposes of this paper the prefix simply complicates the term unnecessarily. 3 The leading publishers tend to prefer novels and hardly ever publish regular pathographies. The exceptions are celebrity pathographies and one pathography, Daher Larsson, where the treating doctor writes an afterword and the patient’s story is presented as much as an example of anorexic thinking as a narrative in its own right. 4 The two books are Anna-Lena Brundin: Nej tack, jag åt nyss! [No Thanks, I’ve Just Eaten!] (Stockholm: Wahlström & Widstrand, 1995) and Ana Martinez: Trösta mig aldrig med en karamell [Never Comfort Me With a Sweet] (Stockholm: Ekerlids förlag, 1994). Both authors are well known comedians in Sweden. While many of the books I examine here have serious, even desperate titles (as for example I May Eat in Heaven or When Darkness Came), these two are witty and light-hearted,
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signalling the comparatively large distance of the adult women to the problems. 5 Two authors, Anna Johansson and Anna Jörgensdotter, differ from the group by not being as explicit about their own experiences. In an interview Anna Johansson answers the question “Have you yourself suffered from eating disorders?”: “Yes, I have had problems that I have been treated for. But they have not been as serious and alarming as they are for my protagonist. […] I have gathered a lot of the material in the book from people I have met in different circumstances.” Ingalill Mosander, “3 frågor till… Anna Johansson,” Aftonbladet, 12 January 2002. Anna Jörgensdotter states: “Of course I have gone through a lot of the things I am writing about myself, but I have dressed the experiences in new clothes”. Joel Eriksson, “Skrivandet som förälskelse,” Kvällsposten, 16 March 2002. 6 Greta Olson, Reading Eating Disorders: Writings on Bulimia and Anorexia as Confessions of American Culture (Frankfurt am Main: Peter Lang, 2003), 8, 9. 7 Berny Pålsson, Vingkippt ängel [Angel with Clipped Wings] (Stockholm: Forum, 2004). Gertrud Hellbrand, Vinthunden [The Greyhound] (Stockholm: Wahlström & Widstrand, 2004). 8 Hawkins analyses three types of what she calls archetypal myths that serve to structure the narratives in pathographies: The Myth of Rebirth, The Battle Myth and The Journey Myth. Besides these she also discusses what she defines as ideological, i.e. culture bound, American myths, including the Myth of Healthy-Mindedness and the Myth of Narration. In the novels under consideration, the Battle Myth is by far the most dominant. 9 Hawkins, 62. 10 Ibid, 64. 11 “… jag vill inget hellre än att du […] ska komma i din stora brummande bil som prinsen på sin häst och rädda den stackars prinsessan från det otäcka monstret. […] Perfekt som i en saga. Nästan så perfekt är det. / Synd bara att jag råkar vara både prinsessan och monstret.” Ia Jonsson, Som en månblomma [Like a Moon Flower] (Viken: Replik, 2000), 81. Sofia’s statement that she is a princess turned into a werewolf points in the same direction. Sofia Åkerman, Zebraflickan [The Zebra Girl] (Västerås: Författarhuset, 2004), 152. 12 The sociologist Arthur W. Frank is also using the concept “territory,” but in a way that differs from my use. For Frank the body is turned into a territory by the medical establishment, when the doctor fails to see the patient as a person. “In becoming a patient – being colonized as medical territory and becoming a spectator to your own drama – you lose yourself,” Frank writes. The difference between our uses of the same word is primarily due to the different illnesses we are discussing (in Frank’s case cancer). Arthur W. Frank, At the Will of the Body:
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Reflections on Illness (Boston and New York: Houghton Mifflin, 2002), 56. 13 “kvinners anatomiske ‘mer-åpenhet’.” Jorun Solheim, Den åpne kroppen. Om kjønnssymbolikk i moderne kultur (The Open Body. Symbolism of Gender in Modern Culture, Oslo: Pax forlag, 1998), 69. 14 “Mat som kan spises, åker som blir sådd, kropp som kan invaderes.” Ibid, 47. 15 “I det hele tatt synes krigsmetaforer å være velegnede liknelser.” Ibid, 108. 16 Of course, I am not suggesting that the metaphors are entirely made up by the authors from their own perspective. Most of them have been in close contact with care givers, psychotherapists or psychiatrists, and they have read other narratives on eating disorders. Furthermore, several have most likely even been encouraged to create metaphors as part of their treatment. 17 Susan Sontag, Illness as Metaphor and Aids and Its Metaphors (New York: Picador, 1990), 99, 182. 18 Frank objects to the use of personifications, and the separation of self and illness, and he argues against a metaphorical thinking of “tumors as enemies and the body as a battlefield,” claiming it to be a destructive way of handling illness (Frank, 85). Frank, together with Sontag, makes an important point in the discussion of somatic illnesses, but I also think eating disorders differ from these. In the latter case, a use of metaphors in order to change the patterns of thought and the image of self actually can help to cure the illness. 19 “just för att inte låta den verkliga världen ta plats i mig.” Katarina Samuelson, Ludenben [Hairylegs] (Lund: Bokförlaget Augusti, 2005), 69. 20 See, for example, Olson, 82. 21 “en galen flicka.” Karoline in Anna Johansson, Vissa föddes perfekta och andra som jag [Some Were Born Perfect, Others Like Me] (Stockholm: Norstedts, 2002), 112. 22 “Trassel,” in Lina Strandberg, När mörkret kom [When Darkness Came] (Västerås: Författarhuset, 2000). 23 “Hur jag än gör så försvinner jag.” Maria Hede, Evelyn Spöke [Evelyn Ghost] (Stockholm: Bonniers, 1987), 121. 24 “Exorcisterna skulle förstå mig bättre än alla medicinmän […].” Martinez, 49. 25 “Snart skulle kalorierna nå tarmarna och bli till parasiter som får mig att svälla upp.” Camilla Dahlberg, I himlen får jag äta [I May Eat in Heaven] (Skellefteå: Ord & Visor förlag, 2000), 29. 26 In the same way as all the values are inverted, so is the fall. The actual fall (or movement downwards) happens as the protagonist is pressed down from her depression, or when she literally falls, by fainting or not being able to stand or sit up because of her fragile state.
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27 See Olson, 24. 28 “oskadliggöra maten – genom att hälla diskmedel på den.” Caroline
Lagercrantz, Malva [Mallow] (Stockholm: Forum, 2004), 125. 29 “klibba fast, blir en hinna av fett under huden.” Anna Ehn, Vårfrost
[Spring frost] (Stockholm: Norstedts, 1995), 147. 30 “vilddjur går bärsärkagång i magen.” Johansson, 91. 31 “frenetiskt tuggande sväljande.” Ibid, 174. 32 Einar Norelius, Petter och hans fyra getter [Petter and His Four Goats]
(Stockholm: En bok för alla, 1996), originally published 1953. 33 Olson, 49. 34 “kvinneligheten [er] en byrde, et åk. Den er tung og jordbunden, en
materiell treghet, som fyller opp og binder. Hun vil være fri og selvstendig, hvilket betyr ukvinnelig.” Solheim, 115. 35 “någonstans därinne under allt fett finns skönheten.” Lagercrantz, 21. 36 “Tänk att fly från den här vidriga kokongen som folk kallar för kropp.” Ibid, 19. 37 “Det är en fettklump som ligger på britsen.” Strandberg, 43. 38 “ofrånkomligt min, aldrig jag men min.” Johansson, 164. 39 “Jag vill kliva ur min kropp, ställa mig bredvid den och stolt säga: ‘Såhär såg jag ut förut, så här såg jag ut INNAN’.” Hede, 84. 40 “sjukdomsskölden.” Åkerman, 86. 41 “Hela jag är nu ett bottenlöst hål som måste fyllas, måste fyllas, måste fyllas.” Martinez, 81. 42 “Utan deras blickar över min kropp hade jag ingenting som jag kunde kalla jag. Luft snarare än spöke.” Samuelson, 153. 43 “Min nya identitet blev att jag hade varit sjuk men att jag slogs för att blir frisk.” Åkerman, 237. 44 Admittedly, by having this positive view on the very narration, I am taking part in what Hawkins defines as The Myth of Narrativity. This mode of thinking has three aspects: the truth of personal narrative (a claim the pathographic narratives hold in spite of being, at least partly, constructed), the personal narrative’s claim to empowerment and, finally, its claim to have an effect on healing (Hawkins, 188). Hawkins sees this myth as central to the present ethos of America, but there is no need to limit it to the American context.
Bibliography Åkerman, Sofia. Zebraflickan [The Zebra Girl]. Västerås: Författarhuset, 2004. Brundin, Anna-Lena. Nej tack, jag åt nyss! [No Thanks, I’ve Just Eaten!]. Stockholm: Wahlström & Widstrand, 1995.
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Couser, G. Thomas. Recovering Bodies: Illness, Disability and Lifewriting. Wisconsin: The University of Wisconsin Press, 1997. Daher Larsson, Ann-Charlott (with an afterword by Dr. Jörgen Herlofson). Ormen och jag [The Serpent and I]. Stockholm: Atlantis, 1990. Dahlberg, Camilla. I himlen får jag äta [I May Eat in Heaven]. Skellefteå: Ord & Visor förlag, 2000. Ehn, Anna. Vårfrost [Spring Frost]. Stockholm: Norstedts, 1995. Frank, Arthur W. At the Will of the Body: Reflections on Illness. Boston and New York: Houghton Mifflin, 2002. Hede, Maria. Evelyn Spöke [Evelyn Ghost]. Stockholm: Bonniers, 1987. Hellbrand Gertrud. Vinthunden [The Greyhound]. Stockholm: Wahlström & Widstrand, 2004. Hawkins, Anne Hunsaker. Recontructing Illness: Studies in Pathography. Second edition. Indiana: Purdue University Press, 1999. Johansson, Anna. Vissa föddes perfekta och andra som jag [Some Were Born Perfect, Others Like Me]. Stockholm: Norstedts, 2002. Jonsson, Ia. Som en månblomma [Like a Moon Flower]. Viken: Replik, 2000. Jörgensdotter, Anna. Pappa Pralin [Daddy Chocolate]. Stockholm: Bonniers, 2002. Lagercrantz, Caroline. Malva [Mallow]. Stockholm: Forum, 2004. Martinez, Ana. Trösta mig aldrig med en karamell [Never Comfort Me With a Sweet]. Stockholm: Ekerlids förlag (in cooperation with the Swedish National Institute of Public Health), 1994. Norelius, Einar. Petter och hans fyra getter [Petter and His Four Goats]. Stockholm: En bok för alla, 1996. Olson, Greta. Reading Eating Disorders: Writings on Bulimia and Anorexia as Confessions of American Culture. Frankfurt am Main: Peter Lang, 2003.
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Pålsson, Berny. Vingklippt ängel [Angel with Clipped Wings]. Stockholm: Forum, 2004. Samuelson, Katarina. Ludenben [Hairylegs]. Lund: Bokförlaget Augusti, 2005. Solheim, Jorun. Den åpne kroppen. Om kjønnssymbolikk i moderne kultur. [The Open Body: Symbolism of Gender in Modern Culture] Oslo: Pax forlag, 1998. Sontag, Susan. Illness as Metaphor and Aids and Its Metaphors. New York: Picador, 1990. Strandberg, Lina (with afterwords by parents and nursing staff). När mörkret kom [When Darkness Came]. Västerås: Författarhuset, 2000.
Note on Contributor Katarina Bernhardsson is a Ph.D. Student at the Department of Comparative Literature, Lund University, Sweden. She is working on a dissertation about illness narratives in Swedish fiction from the twentieth century.
Part 3 The Ideal Body
Writing Over the Illness: The Symbolic Representation of Albinism Charlotte Baker Abstract The manifestation of albinism in the whiteness of albino skin makes it a condition that is loaded with symbolism and meaning in terms of racial difference. The lack of pigment that marks the albino apart in black Africa is also frequently portrayed as symbolic of his or her links to the spirit world, or functions purely as a marker of difference and deviance. Underlying all such interpretations of albinism is a failure to see albinism for what it is: a medical condition. The albino experience portrayed in the work of Williams Sassine, Patrick Grainville and Didier Destremau is firmly located in an African context; a context that aggravates an already difficult predicament. The African albino suffers overt discrimination that results from a fundamental and recurrent misunderstanding of the condition. Apart from the real disability caused by albinism, the albino body is often attributed other inadequacies that are imagined or assumed. Furthermore, albino skin is frequently perceived as a sign of physical weakness that is often interpreted as indicative of mental inadequacy. The small amount of critical attention to the albino body that exists has focussed simply on its whiteness. As a result, there has been a distinct failure to address the other differences or supposed deficiencies that mark the albino apart; differences that explain why the albino body is invariably depicted in representation as damaged, lacking, or flawed. This paper will address this tendency, exposing the ways in which albinism and those with the condition are consistently misrepresented and why. Keywords: Albinism, Africa, Destremau, France, Grainville, Literature, Representation, Sassine Albinism, oculocutaneous: An hereditary disorder characterised by deficiency of the pigment melanin in the eyes, skin and hair. The lack of eye pigment causes photophobia (sensitivity to light), nystagmus, and decreased visual acuity.1 This is the short description of albinism found in the Webster’s New World Medical Dictionary. Certainly, the description fulfils the aim of such dictionaries, that is to give a succinct summary of the condition.
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Yet it falls far short of explaining the physical, psychological and social consequences of living with the condition, failing to express the ways in which albinism is often misinterpreted and the fact that its ætiology is often ignored. The term ‘albinism’ refers to a group of related conditions, the result of altered genes that cause a deficiency in melanin production. This results in the partial or full absence of pigment from the skin, hair and eyes so that albinos have a pale or pink complexion and blonde or even red hair.2 Apart from the real disability caused by albinism, the albino body is often attributed other inadequacies that are imagined or assumed, such as deafness and muteness. Furthermore, albino skin is commonly perceived to be a sign of physical weakness that is often interpreted as indicative of mental deficiency.3 In much of Africa, disabled people remain excluded from education and employment, incapacitated by inadequate transportation systems and substandard living conditions. Poverty and a lack of healthcare and social security systems further aggravate the situation, putting the burden of care onto the family. The situation for the African albino is aggravated by traditions that perceive disability as a curse or as the manifestation of sin in the family and by media portrayals of people with disabilities that enforce stereotypes of dependency, incapacity and inhumanity. Oculocutaneous albinism, as the citation from Webster’s confirms, manifests itself in the whiteness of albino skin. Indeed, the small amount of critical attention to the body of the black African albino that exists has focused simply on its whiteness. This is not surprising, for the enigmatic location of white skin on ‘black’ features problematises racial categorisation according to the connotations of skin colour. The manifestation of albinism in the colour (or lack of colour) of nonpigmented albino skin makes it a condition that is loaded with symbolism and meaning in terms of racial difference, for it implies that there are distinct ‘races’ of people with clearly definable sets of social and physical characteristics. Although it has become clear from scientific research that there is no necessary link between physical difference and social characteristics, racial categorisation long presupposed social significance in physical differences, binding the two together inextricably. At the extremes of colour, or ‘race,’ the struggle has been to define the very nature of ‘blackness’ and ‘whiteness,’ and the implications of belonging to or identifying with either group. In such terms the albino body emerges as potentially subversive, particularly in a postcolonial African context, for it quite literally embodies the colonial project of ‘whitening’ the colonised. However, in this paper I wish to move beyond the whiteness of the albino body in order to explore the tendency to view it as purely symbolic and the consequent failure to see albinism for what it is: a medical condition. The striking appearance of the black albino has for centuries been a source of fascination, and even today a plethora of misconceptions about albinism persists.4 The tendency to focus simply on the whiteness of the
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albino body is indicative of a general inability to see beyond it to the person beneath. As a result, there has been a distinct failure to address the other differences or supposed deficiencies that mark the albino apart; differences that explain why the albino body is invariably depicted in representation as damaged, lacking, or flawed. Indeed, Patrick Grainville’s Le Tyran Eternel, Williams Sassine’s Wirriyamu and Mémoire d’une Peau, and Didier Destremau’s Nègre Blanc expose this tendency. Grainville’s protagonist is defined simply as “The Albino. … Without a name. With no other identity than his indescribable colour”.5 Repeatedly, the suggestion is that there is no need to look beyond the skin of the albino to identify him, for it is white skin above all else that marks the albino apart. It is not surprising, then, that the condition is often wrongly assumed to occur only among those of African descent, for it is clearly more visible within black communities. This assumption is typical of the misunderstandings surrounding the albino that manifest themselves in myth and stereotype and which pervade representations of albinism. The arts, film, fiction and the medium of comics are replete with albino figures that possess supernatural powers and other qualities that serve to emphasise their abnormality; a trend that contributes to the difficulties faced by people with albinism, for it compounds the tendency of others to regard them as freaks of nature, or objects of morbid curiosity. Typically, the qualities of albinism are exaggerated to identify such characters as deviant or strange and they become villains with pale skin, white hair and blood-red eyes. The novels of Sassine, Grainville and Destremau are characteristic of such representations of albinism in their insistently negative portrayal of the albino body and in their tendencies to impose meaning onto it, whether consciously or unconsciously. The complex nature of the albino body and the taboos and prejudice that it evokes make it an inspiring subject for these writers. However, there is no middle ground in the portrayal of the albino. That is to say, albino characters are defined by extremes, marked apart by physical difference that is reproduced in various forms of social deviance. Sassine’s representation of his sociopathic protagonist Milo Kan demonstrates this tendency, but at the same time attempts to explain the cause of such deviance, for Milo’s madness manifests itself in a two-way process. His albino body is depicted as being at the root of his madness, but in turn his madness becomes an expression of his difference. Portrayed as the result of a lifetime of suffering, Milo’s madness raises questions about the institutions and discourses that marginalise individuals and the assumptions upon which they are built. Although the three novelists whose work I explore here write from very different perspectives — Sassine is Guinean, Grainville and Destremau are French — their portrayal of the albino is startlingly consistent and in all four novels the focus is very much on the albino
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body, on its importance and adequacy, or otherwise, for the construction of identity. The human body is generally perceived to offer boundaries to the Self, presenting both the uniqueness of the individual and a site for the marking of difference. It is deemed a key site for identity construction; important because it shapes and structures both an individual’s interventions in, and classifications of, the world. However, the pervasive negativity of the references to the albino body in the works of Sassine, Grainville and Destremau problematises the possibility of viewing the albino body in this way. Sassine’s fiction in particular is populated by sick, damaged or dying bodies, and all four novels examined here represent the albino body as being vulnerable, inadequate or failing; an insistent negativity that signals a failure to affirm albinism for its own sake as a legitimate identity. Exaggeration and the overuse of adjectives reveal the inadequacy of language for the expression or definition of the albino body and he becomes, “this whitened black,” “the miserable piebald” or simply, “white, pink, grey, skinless.”6 The struggle to define the albino is further revealed as the writers resort to hyperbolic language and the frequent use of metaphors to ascribe meaning to the albino body. In Sassine’s terms, “The albino is like a firefly in the night.”7 The image gives some sense of the ephemeral nature of the albino, which is emphasised too by Grainville in his description of his protagonist Alpha as “a mysterious exile.”8 Such attempts to define the albino fail to do more than further confirm his ambiguous nature and reveal the most fundamental problem implicit in writing the taboo or marginal identity to be the impossibility of expressing the unknown.9 It is the non-pigmented skin of the albino that marks him apart and therefore albino skin is most often seized upon for its symbolic value in fictional representation. Skin is generally supposed, at the very least, to protect. However, the skin of the albino is open to assault from the sun and easily becomes damaged or diseased.10 The skin that would generally be considered a boundary or a seam is broken down and becomes inefficient as a membrane of separation, as a divide between the individual and the world. Notions of the skin as ‘final boundary’ and the sense of the ‘closed person’ are challenged in the albino body, and with this breaking down of boundaries comes a characteristic disruption of categories.11 The failure of albino skin to ‘contain’ or to delimit is emphasised in these novels in descriptions of its transparency, with the skin failing to provide a division between the internal and the external. A common analogy is drawn in these novels between the transparency of skin and the associated sensitivity or transparency of emotions. Whereas dark skin is often interpreted as impenetrable and ‘concealing,’ light skin is portrayed as revealing and open to interpretation. So, just as albino skin is open to damage from the sun, so it becomes vulnerable to the gaze of others and therefore the albino individual is rendered open to their judgement and to
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the imposition of identity from without. The perceived transparency of albino skin is carried still further in representation, to the point of absence. Since albino skin fails to protect, to contain, or to carry out the functions of ‘normal’ skin, it is often perceived and portrayed as inexistent. In Grainville’s words, albinos are, “Incomplete, unfinished, without a definitive skin,” “more naked than a worm”.12 The ‘skinless’ albino is stripped naked and his body exposed as defective. In attempts to classify or categorise the albino, these individuals are grouped in with others who are excluded from society and albinism comes to be seen purely as a disability. We learn, for example, that the albino Samate’s difference ‘provokes the same negative reactions, the same repugnance as the leper.’13 This tendency to group together and draw comparisons between the disabled is illustrated in Sassine’s reference in Mémoire d’une Peau to the friendship between the protagonist Milo and the deaf-mute Sadou. Milo recognises that for Sadou, listening to the radio is a form of ‘passing for normal’ that echoes his own tinting of hair and skin, giving a sense of shared understanding. “He bent and switched on the small radio from which he was never separated; a means of resembling others, like me with my skin creams…”.14 Sadou’s disability is revealed only when the programmes finish and the crackling of the radio betrays him. As Garland Thompson notes, “the concept of disability unites a highly marked, heterogeneous group whose only commonality is being considered abnormal.”15 Bodies that are disabled are perceived as being out of control, violating physical norms and disruptive in their unpredictability. The disabled body defies regulation and ordering and challenges the concept of ‘wholeness,’ explaining the need to represent the disabled as one; a categorising of deviant bodies that reveals a need to control and to ‘know.’ The juxtaposition of ‘normal’ and ‘deviant’ bodies is prominent in each novel, exposing the importance placed on ‘normality’ and what is ‘known.’ However, the need to see recognisable traits is constantly inhibited by the deviance of the albino body; a body that fails to reflect the characteristics of those around. Ngaire Blankenberg describes how, when others look at the albino, all that is ‘known’ is suddenly disrupted: “For a minute, their sense of the ways of the world [is] ruptured. Just by looking.”16 This sense of disruption underpins the four novels examined here, in which the highly visible physical differences between parents and child are emphasised and given meaning. In Sassine’s Mémoire d’une Peau, Milo is constantly reminded of his physical inadequacy and this is only aggravated by his mother’s insistence on comparing father and son: “Your father, by that I mean Charles, was a very good man … Tall, strong, muscular … You, you remained skinny, pale…”.17 Milo’s whiteness is equated to physical weakness whilst, typical of Western stereotypes of blackness, Charles is portrayed as being strong and virile,
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and his physical strength is equated to a strength of character. Just as the contrast between the bodies of father and son is emphasised, so the incongruous difference between the whiteness of Samate’s “milky-white body” and his mother Mbuya’s own body – “of a deep black colour” – is marked as she struggles to see her likeness in her son.18 Her horror at having given birth to “an albino, one of these horrible individuals, neither black nor white, one of these aberrations that nature occasionally produces” is qualified by the statement that the baby is “an anomaly, probably necessary that others might know with all their heart the benefit of their normality.”19 The startling whiteness of the child does indeed force the reader to reflect on Mbuya’s blackness that confirms her as a native of her country, “a pure and authentic product of deepest Mozambique.”20 However, in contrast to his mother’s ‘purity’ of race and resulting ‘authenticity,’ Samate is firmly positioned as an outsider, belonging neither to the blacks nor the whites. Mbuya recognises her own initial response to her son in his father’s reaction to the child: The young woman perceived her husband to be passing through the same initial phases as she had: incredulity, incomprehension, the desire to confirm as though he didn’t believe his eyes. Then, revulsion, the refusal to admit the unbelievable, the unforeseen, attempting to explain, to seek a scapegoat.21 The process of incredulity, denial, and attempt at recognition is followed by the natural need to comprehend and to explain. Samate’s mother’s attempts to see beyond his albinism only bring the realisation that her son’s difference will render them both subject to public derision. The loss of conventional points of reference means that the albino cannot be recognised or classified in terms of the usual ‘identifying features,’ as Grainville’s Tetiali finds when asked the age of the albino he has just seen rushing across the road in front of him. He replies, “It is difficult to say, given the whiteness of his hair, his eyebrows, his pale eyes, his flaking skin.”22 The whiteness of hair that would normally be black, the paleness of eyes that should be dark and a skin that is damaged and flaking signify the replacement of ‘normal’ identifying features with the distinctive traits of albinism. The deviant albino body fails to meet the criteria of the ‘normal body’ and is instead firmly positioned as Other. A web of misconceptions surrounds the albino body, permitted precisely by such perceptions that the albino body is in some way lacking or inadequate. Apart from the real disability caused by albinism, the fictional albino body is often attributed other defects that are invented or assumed. The albino is often portrayed as feeble minded, as in Sassine’s representation of the albino Condélo who struggles to comprehend the
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world in which he finds himself. Moreover, since people with albinism generally have poor eyesight, the specious conclusion is drawn that they must also be deaf and mute. The disgust that is so often portrayed as being inspired by the albino body is often rooted in another common misconception about albinism, namely that it is contagious. There are many references in the secondary literature on albinism to the fact that if an albino has touched food, it will not be eaten by anyone else.232In Destremau’s Nègre Blanc, the association of albinism with leprosy reinforces the notion of the contagious nature of the condition. Because of the web of beliefs surrounding albinism, albinos, like lepers and the other disabled, were traditionally segregated in African society. Today this continues in some parts of Africa in more subtle ways, as people cross the road to avoid albinos in the street and albino children are prevented from mixing with their peers for fear that their ‘disease’ will spread. Such responses to albinism appear ridiculous when its genetic provenance is recalled. However, the rooting of such misconceptions in traditional and religious belief means that even when the genetic cause of albinism is fully explained, an undercurrent of superstition remains. Grainville illustrates perfectly the reluctance to accept the genetic explanation for albinism as his protagonist Houphouët-Boigny expresses his horror at the revelation that the albino Alpha is his son, I’ll accept a superior progeniture. But an albino! My genes exclude this defect, this larva-like lineage. There has never been an albino in my family. Never! Nowhere! … My mother descends from a tribe of Akoué chiefs. Our genealogy proves it. My father, a Samori soldier, hero, rebel, conqueror.24 A similar reaction is found in Destremau’s Nègre Blanc as Samate’s father decides that “the albino couldn’t be his son, he could not possibly figure in his lineage.”25 The implication is that albinism is a stain on the reputation of the family, a sign of failure or weakness. Destremau later describes the albino as being beyond tolerable norms, articulating the limits of acceptance that are particularly significant in terms of rural African society where children are still killed at birth if they are found to be disabled.26 Indeed, the killing of disabled children is central to Destremau’s novel for it is in fear for her son’s life that Mbuya, the mother of an albino child, leaves the village to live in isolation with her son Samate in the forest. We learn that, “if albinos, just like others disabled at birth, are not found in the village, it is because they are eliminated.”27 The killing of albino and other disabled children at birth is recorded in much of the anthropological literature on albinism. In fictional
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representation, the killing of children is portrayed as a secretive act that is carried out discreetly. “We serve as sacrifices in certain regions of Africa” comments Sassine’s Milo, perfunctorily dropping the comment into conversation.28 However, the grave significance of these words is exposed in Wirriyamu as Sassine focuses on the last days of Condélo’s life, evoking the concurrent fear and naivety of the albino who is pursued in the belief that the blood of the albino brings luck. In direct contrast to the clandestine act of infanticide, the sacrifice of albinos is portrayed as a symbolic, shared act. Sacrifice renders the albino body valuable so that, somewhat ironically, a previously devalued body takes on significance in death. However, beneath the repeated references to a time when sacrifice was practiced in Africa and to the meeting and conflict of these beliefs with Western religion, an undertone of uncertainty runs through the narrative of Wirriyamu. The sacrifice of the albino in the belief that his blood has certain powers is ultimately portrayed as a betrayal, the result of a fabrication of beliefs for which the albino must suffer. The first suggestion of this occurs early in the narrative: “The tradition had thus been established, without effort or contestation, as naturally as the day and the night, suffering and pleasure. No-one knew how old it was, or where it came from.”29 This same idea is later developed by the character Kabalango who, in attempting to unearth the foundations of the belief that the blood of the albino brings health and success, discovers that it had been introduced, or at least encouraged, by the Portuguese because one of their first administrators, who had been mobbed by a tribe during a rebellion, owed his survival to the blood of the albino. As Tanella explains in Le Tyran Eternel, “Every society has a tendency to invent a scapegoat onto which it projects its fears, its dread and its murderous impulses.”30 Examples of vilification and blame are evident in all four texts explored in this study and expose the necessity of discrediting certain sections of the population in order to maintain the stability of others. In Wirriyamu in particular, the need to project problems onto an individual who can be clearly identified as different or marginal is clear. It is not surprising then that the albino should be a victim of such beliefs, particularly when this process is considered in terms of René Girard’s theory of scapegoating.31 Girard identifies the particular point at which the need for a scapegoat is most pressing as being a point in time at which there is a collapse of order. In Wirriyamu, this ‘order’ is the colonial rule of the Portuguese, which at the time of the action is breaking down into anarchy. The search for a scapegoat is undertaken; that is to say, the search for an individual perceived to be marginal. Girard suggests that this individual will be perceived to have attacked the very foundations of societal order. The albino, a white-skinned black in a society founded upon the hierarchy of white over black, seems the obvious target in a colonial society such as that of Wirriyamu. Once a scapegoat is identified,
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the community will unite against him or her, leading to the penultimate stage in which violence results in the death of the victim (in this case the albino), after which calm will descend. Girard suggests that over time, discord will reappear, so it becomes necessary to recapture a sense of peace. The final step in the process then is the ritual of sacrifice, a practice of substitution that functions as a re-enactment of the original murder with an innocent victim as a substitute sacrifice. Scapegoating is exposed as a process by which an individual such as the albino is discredited, or rendered ‘different’ in order to satisfy the needs of others. It becomes evident that the fictional works of these writers serve to perpetuate the misunderstanding of albinism, sustaining the myths surrounding the condition. Although Destremau appears to set out to challenge the stereotypes and prejudices surrounding the condition, his attempt in his foreword to explain his reasons for writing about albinism appears sentimentalising: This book is neither an ode to albinism, nor a treatise on this congenital illness that strikes many Africans. But, having so often encountered those poor children squinting in the sunshine, or those courageous adults, deprived of pigmentation and suffering terribly from their eyes, I wanted, in my own way, to restore the humanity of ‘those who see in the dark’, which is how, until quite recently, they were described…33 There is also significant misrepresentation in the fictional work of these writers in their refusal or failure to address certain issues, such as the poor sight of the albino. Characteristic of much writing about disability, the sexuality of a body deemed ‘disabled’ is also ignored or, alternately, is portrayed at the other extreme as a perverse sexuality that is equally deviant.32 There are repeated instances where events are glossed over, aspects of albinism that are not ‘appropriate’ to the writer’s particular portrayal of the albino are side-stepped and so the natural tendency of representation to distort and misinterpret, to amplify and to misrepresent is evident in these narratives. Yet, as Jayne reminds us, misrepresentation is a natural constituent of fiction, for unless the truth is distorted or reorganised, fiction cannot, by definition, be fiction.34 The misrepresentation of the albino in these novels may simply result from this, since the albino body, in its perceived emptiness and lack, invites interpretation and inspires elaboration. The tendency in literature towards misrepresentation and the failure to portray a positive image of the albino may also be due to the fact that without any albino writers there is no acceptable model of representation. Albino writers have struggled to find a voice and as a result of the lack of writing by people with albinism, there has been a
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consequent failure to deconstruct the recurrent misrepresentation of the albino in literature. Equally, when knowledge is absent, representation becomes a substitution of the unknown. Even critics and writers who on the surface appear to have researched the condition are frequently found to be misinformed or tending towards generalisation.35 3 It is the extreme negativity with which the albino is portrayed that is of interest here, for albinism is constantly distorted to become something else, to signify. It is striking that such negativity persists across much writing about albinos as well as in other forms of representation. As this study has revealed, misrepresentation of the albino occurs on many levels. Certainly, the myths and stereotypes surrounding albinism in Africa as evoked in the works of Sassine, Grainville and Destremau play a central role in this, built in to common belief systems as they are. However, these myths and stereotypes in themselves are typical of a more general tendency. That is, the need to emphasise the real or assumed deficiencies that mark the albino apart, reinforcing his difference and ultimately serving to confirm the normality of those who designate his body as defective. The need to categorise, to define and to ‘know’ the Other is continually frustrated by the albino body and it has become evident that this is particularly problematic for the writer attempting to represent the albino. There seems to be a recurrent need in fictional writing about albinism to account for that which is perceived to be lacking, a desire to complete the albino body by imposing meaning onto it. Therefore, despite the wealth of research and documentation on the genetic nature of albinism, the tendency has been to focus purely on the symbolic potential of albinism and to write over the reality of living with the condition.
Notes 1 Webster’s New World Medical Dictionary (London: Wiley Publishing, 2003) s.v. Albinism, Oculocutaneous. 2 I use the term ‘albino’ throughout this paper for ease, however, the term ‘person with albinism’ is considered more appropriate, as it puts the person before the condition. See the website of the National Organisation for Albinism and Hypopigmentation (NOAH). 11 June 2005. (30.05.06) 3 Many people with albinism are registered disabled in the West since the majority are legally blind, suffering from photophobia, increased sensitivity to light and nystagmus, which causes involuntary eye movements. 4 The entertainment industry is brimming with grotesque or fantastic characters that are labelled ‘albinos’ such as the demonic albino in Peter Hyam’s horror film, End of the Days (1999). Likewise, La Lunatica, a
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‘mutant’ from the X-Men 2099 series, is depicted with the stereotypical physical traits used to characterise people with albinism. 5 Grainville, 302 (My translations throughout) 6 Grainville, 124. 7 Destremau, 239, Grainville, 56. 8 Sassine 1998, 81. 9 Grainville, 28. 10 Skin cancer is common among African albinos who have not been educated about the damaging effect of the sun on their skin or who do not have access to healthcare and skin products. 11 For further discussion of these terms see Benthien, 2002. 12 The phrase, ‘plus nu qu’un ver’ does not translate well into English. In French it is a commonplace simile. 13 The comparison of the albino to the leper here is consistent with the common belief that albinism is contagious. 14 Sassine 1998, 152. 15 See Garland Thompson 2002, 235. 16 Blankenberg, 7. 17 Sassine 1998, 25. 18 Destremau, 86. 19 Ibid., 29. 20 Ibid., 34. 21 Ibid., 45. 22 Grainville, 42. 23 There are repeated references to people crossing the road to avoid walking near an albino and to the segregation of albino children in not allowing them to attend school in the publications of ZIMAS (Zimbabwe Albino Association) and NOAH (National Organisation for Albinism and Hypopigmentation). 24 Grainville, 133. 25 Destremau, 47. 26 The reality is that in much of Africa, disabled people often remain excluded from education and employment, incapacitated by inadequate transportation systems and substandard living conditions. Poverty and a lack of healthcare and social security systems further aggravate the situation, putting the burden of care onto the family. 27 Destremau, 37. 28 Sassine 1998, 133. 29 Sassine 1976, 40. 30 Grainville, 26. 31 Girard, 31.
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32 Sex is very much associated with youth and physical attractiveness, and when it is not it is often considered less acceptable. See, Garland Thompson, 2002, pp.231-269. 33 Destremau, 1. 34 Jayne, 1992, 46. 35 For example, Martin’s sweeping statement that ‘the skin conditions of albinism and vitiligo cause little or no physical debilitation’ is typical of the many misunderstandings about albinism. See Martin, 2002, 186. Although Martin fails to acknowledge the practical problems caused by non-pigmented skin, he does note the stigma attached to albinism.
Bibliography Benthien, Claudia. Skin: On the Cultural Border between Self and the World. New York: Columbia University Press, 2002. Destremau, Didier. Nègre Blanc. Paris: Hatier International, 2002. Garland Thompson, Rosemary. “Theorizing Disability.” In Relocating Postcolonialism, edited by David Goldberg and Ato Quayson, pp.231-269. Oxford: Blackwell, 2002. Girard, René Le Bouc émissaire Paris: Grasset, 1982. Grainville, Patrick. Le Tyran éternel. Paris, Editions de Seuil, 1998. Jayne, Edward. Negative Poetics. Iowa: Iowa Press, 1992. Martin, Charles. The White African American Body. New Jersey: Rutgers, 2002. Masha, Maryceline ‘What kind of Black are you?’. 8 April 2005. The Guardian, Tanzania. (31/06/05) Sassine, Williams. Wirriyamu. Paris: Présence Africaine, 1976. Sassine, Williams. Mémoire d’une peau. Paris: Présence Africaine, 1998. Shiel, William C. Websters New World Medical Dictionary. London: Wiley Publishing, 2003.
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National Organization for Albinism and Hypopigmentation (NOAH). 11 June 2005. (30/05/06)
Note on Contributor Charlotte Baker is a PhD candidate in the Department of French and Francophone Studies at Nottingham University. Charlotte holds an MA in French and Francophone Literatures from Nottingham and her research interests centre broadly on twentieth century French and African Francophone fictional writing. Her current research interests include theories of the body and identity, marginalised and stigmatised groups in Africa, and the theory and representation of disability, madness and monstrosity.
Genetics, Disability and Symbolic Harm Elisabeth Gedge Abstract In this essay I analyse the claim that the expanding practices of prenatal genetic diagnosis (PGD) constitute a threat to the status of persons with disabilities. First I consider whether genetic testing for disability differs ethically from routine prenatal interventions, and sends the message that persons with disabilities are not welcome. Drawing from the literature on the politics of recognition, I then identify the harms associated with subordinate status, showing how the symbolism of our reproductive genetic practices contribute to these harms. Finally, I consider ways to reconceptualise harm in terms of dignity and equality so as to resist the subordination of persons with disabilities. Keywords: genetics; disability; harm; recognition; symbolism; dignity. 1.
Introduction In a recent issue of the Canadian public policy journal ISUMA (which is the Inuktitut word for ‘idea’), Timothy Caulfield and others use the term ‘genohype’ to refer to the excessive preoccupation with genetic medicine, the exaggerated claims made on its behalf, and various associated dangers.1 ‘Genohype’ is not a new phenomenon. From its inception, supporters of the Human Genome Project have represented it as the key to population health, overlooking both the complex interaction between genetic predisposition and environmental and social determinants of health, as well as the uncertainties associated with both the expression and prediction of genetically related conditions. More significantly for my present topic, the foregrounding of genetic health, when combined with an analysis of health based on species normalcy, presents a grave threat to the status and well-being of persons with disabilities. Kerry Taylor and Roxanne Mykitiuk have argued, in the same issue of ISUMA, that although, paradoxically, genetic research has the potential to challenge assumptions about normalcy by emphasising genetic variation amongst humans, the message of genetic discourse has been quite the opposite.2 Notions of genetic health as statistical normalcy have led to dichotomised, essentialised and internalised identities, with disability constructed as deviance. Furthermore, argue Taylor and Mykitiuk, when health as normalcy is linked to political liberalism’s ideal of equality, an implicit justification for genetic intervention and ‘correction’ emerges. For this reason feminist philosophers have called for a scrutiny of the identity construction presupposed in much genetics discourse and have called attention to the limitations of the anti-
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discrimination approach to pro-tecting persons with disabilities in the current medical and political climate.3 2.
The Discriminatory Nature of Prenatal Genetic Testing Criticism of the medical model of disability in general, and its gen-etic version in particular, is substantial. While much of the criticism focuses on the need to recognise the interactivity of social, environmental and biological factors in the classification and degree of disability, attention has also been paid to the link between genetic diagnosis and our reproductive practices. Currently the primary function of genetic medicine is in screening for genetic ‘anomaly,’ with reproductive counseling and the offer of selective implantation or termination as its corollary. Many persons with disabilities claim that this function, and the conceptualisation implicit within it, not only stigmatises them as deviant but sends a message that their lives are not worth living and/or that they are not welcome. This has been labeled the expressivist argument. Examples of its advocates are: Susan Wendell: “...the widespread use of selective abortion to reduce the number of people born with disabilities...sends a message to children and adults with disabilities, especially people who have genetic or prenatal disabilities, that ‘we do not want any more like you.’”4 Laura Hershey: “I believe the choice to abort a disabled fetus represents a rejection of children who have disabilities.”5 And Marsha Saxton:” The message at the heart of widespread selective abortion on the basis of prenatal diagnosis is the greatest insult: some of us are “too flawed” in our very DNA to exist; we are unworthy of being born...”6 Notwithstanding widespread sympathy amongst commentators for the concerns of persons with disabilities, many writers challenge the expressivist argument. Laura Purdy, for example, claims that we can separate the trait from the person, and in testing for a disease we are not passing judgment on the worth of the individual who might bear that trait.7 Bonnie Steinbock concurs, adding that in fact the rise of prenatal screening has coincided with greater inclusion of persons with disabilities - a paradoxical result if the expressivist argument is sound.8 And in a careful critique of what he labels ‘the disability discrimination objection’ (DDO), Stuart Oultram challenges the moral consistency of advocates of expressivism.9 Oultram begins his critique with a summary of the DDO, identifying the threat to the status of the disabled as its central concern. He claims that, according to DD objectors, the problem is that the devalued status of the disabled will exacerbate or create prejudice against the disabled and may be internalised by the disabled in negative self-perceptions. Yet, asks Oultram,
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why should the DD objectors target practices like pre-implantation genetic diagnosis (PGD) but not condemn engaging in or recommending health and lifestyle measures intended to reduce the likelihood of giving birth to a disabled child? As he points out, women who take recommended dietary supplements and modify risky lifestyles while pregnant are praised for being responsible, as are physicians and others who encourage such behaviours. But is not the intent in the diet/lifestyle case and the case of genetic testing identical – namely, to avoid having a disabled child? To be morally consis-tent, claims Oultram, perhaps we should accept or condemn both practices. Three possible differences between genetic and ‘diet/lifestyle’ interventions into reproduction are considered and rejected by Oultram. First, he says, one might argue that the non-genetic interventions are generic health recommendations, not singling out persons with disabilities in particular. This, however, is false, as he notes. Many dietary supplements (such as folic acid) and lifestyle modifications (the elimination of alcohol) are aimed specifically at fetal health. A second difference might be that, while diet and lifestyle changes are not guaranteed to produce healthy children, selection against a potentially disabled person through the elimination of affected embryos or pregnancy termination is always ‘successful.’ But, argues Oultram, for the DD objectors the outcome of interventions is not the key issue; rather, what is objectionable is the intent , which is to avoid having children with certain disabilities. So the second ‘difference’ is not a differ-ence. And thirdly, says Oultram, it might be argued that, while diet/lifestyle measures aim at the alteration of persons, genetic testing aims at their pre-clusion. But, he says, since the thrust of the DDO is “not that embryos are being terminated per se but rather that techniques such as PGD will reduce the number of disabled children and this in turn will have a negative social impact upon disabled people...”10 Once again the ‘difference’ is not made out. For either practice will impact the population of children with disabilities. Now, in my opinion, Oultram has not got at the heart of the DDO. He rebuts ‘differences’ two and three by a consequentialist rendering of the DD objection which foregrounds the impact of PGD on the well-being of persons with disabilities via affronts to their status. But the DDO, as exem-plified in expressivism, has an irreducibly deontological dimension: the heart of the objection is that it represents persons with disabilities as having inferior moral worth. And this would be ethically objectionable even if, as Steinbock suggests, reducing the numbers of persons with disabilities in the population actually coincides with a greater commitment to ability-inclusiveness. To clarify this point, let us turn to the distinction made by Adrienne Asch between the termination of ‘any’ fetal life and that of a ‘particular’ fetus.11 Asch, who endorses the expressivist argument, considers whether any (meaning, every) act of pregnancy termination is vulnerable to a version of the expressivist argument. After all, a pregnancy termination might be regarded as sending the message that children (as a group) are not welcome, that their lives
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are not worth living, that they have inferior moral worth. This she rejects by appealing to the ‘any’/ ‘particular’ distinction. Generally, terminating a pregnancy, while always difficult, and often tragic, should be interpreted, she claims, as the decision by a woman that having a child at this time would seriously threaten some key aspect of her well-being. Perhaps her health would suffer, perhaps she has been traumatized by rape or incest, perhaps she can ill afford to take reduced wages or lose her job, or perhaps she cannot face being the mother of a child fathered by a particular man. None of these reasons, she claims, concerns the identity of the child-to-be, not even the last; rather, they are all about her existential situation. Terminating a pregnancy for disability, however – terminating (in her terminology) a particular pregnancy – says something about the child-to-be. It says that the possession of an anomalous trait makes it unacceptable. While she stops short of saying that women ought not to terminate on the grounds of disability, she encourages us to cultivate an imagination in which the life of such a child could be viewed as worthwhile, thus presumably displacing what she considers to be dangerous myths about the value of disabled life. Bruce Jennings, another participant in the debate over expressivism, expands on the theme of imagination in relation to genetic terminations.12 Jennings alerts us to several worrying features of the geneticization of reproduction, especially the presentation of a forced choice which coincides fatally with the construction of a ‘genetic imaginary.’ As he argues, pregnancy (or the prospect of it) is received into an interpretive framework, one which is increasingly medicalised and geneticised. This framework is ethically impoverished, for it presents genetic testing as morally neutral, choice as a radically individual matter, and the ethical issues around technological interventions into pregnancy as simply problems of incomplete information (readings/data). But far from being ethically or epistemologically neutral, reproductive technology is in fact part of a system of knowledge and power. As he says, “Genetic tests provide a highly charged and theory-laden form of knowledge that structures our perception of our physical bodies, our social selves, and our temporal futures in selective and distinctive ways.” And the genetic imaginary offers to prospective parents “a homunculus shaped by the exclusive emphasis on some particular DNA sequence(s) and some particular biochemical processes associated with that sequence.”13 Alternative ‘pictures’ and understandings of lives, most importantly the personal narratives of persons with disabilities, are subordinated or absent, virtually ensuring that (the forced) choice will be to terminate a pregnancy or select against an affected embryo. Whereas the current framing of reproductive choice in a reductive, individualised manner renders questions of public morality and social good irrelevant or inappropriate, being alert to how our moral perceptions are being narrowly framed should encourage us to welcome and facilitate a diversity of understandings of reproduction and of lives, so that deeper moral reflection within reproductive choice is possible. Thus, both Jennings and Asch seek to
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expand our understanding of the moral issues at stake in the DDO and its expressivist articulation. Focusing attention on how genetic testing in the reproductive context almost inevitably reduces the person to their (‘healthy’ or ‘diseased’) genes allows us to see that Oultram’s final challenge to our moral consistency can be answered. The final distinction Oultram considered, and rejected, between genetic and ‘routine’ reproductive intervention was that the former terminates or precludes lives, whereas the latter merely aims to alter them. Oultram sees this as a distinction with no difference and he sees both practices as a function of the desire to avoid the birth of a disabled child. However, as Asch and Jennings have pointed out, in the former case the prospective child is seen as nothing but the disability; in the latter, a child with a life worth living, whose life can be en-hanced. Reducing someone to a simple trait and judging that trait to be sufficiently damning to rule out a worthwhile existence is at the heart of the DDO. This is the moral residue which allows one to reject genetic testing while supporting ‘routine’ health interventions into pregnancy. I call the moral residue a symbolic harm. 3.
The Message of Genetic Testing Even if we grant that genetic interventions designed to prevent the birth of persons with disabilities are ethically different from routine fetal enhancement, and that their reduction of persons to disabled traits is at the heart of the moral objection to them, can we also conclude that they send the negative message to persons living with disabilities that they are unwelcome? Eva Feder Kittay, a philosopher and the mother of a severely disabled daughter, is sceptical about this aspect of expressivism. In a moving published dialogue between herself and her adult son, she carefully analyses but ultimately dismisses the expressivist argument.14 Kittay bases her rejection of expressivism on her understanding of the necessary conditions for the meaningfulness of an act. According to Kittay, for an act to convey mean-ing six conditions must be met: there must be a speaker, a hearer, a message (or mediating ‘depiction’), a channel of communication, a context and a code. A woman’s decision to terminate a pregnancy because of disability, she ar-gues, fails to meet some of these conditions: in particular that there be a code (a widely shared set of meaning conventions) and channel of communication. Although acknowledging that the act of selecting against disability takes place in a context of ableist discrimination, Kittay finds such acts fail to meet the conditions for unambiguous meaningfulness, because they lack a clear chan-nel of communication and a common code. James Lindemann Nelson agrees with Kittay that singular acts of selective termination for disability fail to send an unambiguous message; however, he considers whether the social practice of expanded prenatal genetic testing may meet the semantic conditions Kittay sets out. A reproductive practice such as prenatal genetic testing is public (indeed, in places routinized), and hence is mediated through the channels of communication which generally
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convey medical information (television programs, pamphlets in doctors’ offices, educational courses and materials). It is embedded in a medicalized and geneticized ideology of health, and hence enjoys the authority of medical experts whose utterances, in the context of ableism, provide the code (ie. disability as deviance). Thus whereas individual acts may be ambiguous in meaning and hence poor vehicles of any message, a social practice, by contrast, may succeed in conveying a determinate meaning. However, Nelson argues that prenatal genetic testing, as a social practice, does not because its meaning is not unambiguous. Rather than sending a derogatory message about disability, he says, it may instead reflect a concern for women’s autonomy, a desire to reassure pregnant wom-en, or a commitment to population health. Nancy Press, however, is not convinced.15 Press, who with her research team has conducted studies of attitudes and behaviours of practitioners and ‘consumers’ of prenatal testing, draws attention to further features of the practice that support the expressivist claim. She notes the type of language used (e.g. the language of ‘risk’), the routinisation of maternal testing without statistical justification, the asymmetries of authority between clients and physicians or counselors, and the background attitudes of all participants towards disabilities. She argues that these features imply the settled goals of termination and cost saving, which are at odds with the pur-ported goals of enhanced maternal and infant well being. As she notes, the routinisation and medicalisation of prenatal testing have arguably compro-mised both reassurance and expanded choice for women; and prenatal testing only serves population health by reducing the population of the disabled. If Press is right, the practice of prenatal genetic testing can be understood as sending the message that persons with disabilities are un-wanted. The ‘success’ of its message relies on a combination of the norma-tivity of medicalised understandings of health and the social authority of physicians. The dominant ideology of health and its embeddedness in routin-ised, hierarchical health care delivery and a broader ableist culture ensure a stability of context, code, and channel of communication in which the nega-tive message about persons with disabilities can be sent and received, albeit without conscious intent by ‘senders’ or even explicit recognition by ‘re-ceivers.’ 4.
The Harms of Misrecognition What is the significance for persons with disabilities of the foregoing analysis of the meaning and message of expanded prenatal testing? Apart from the serious eugenic implications of the practice, it exacerbates the existing harms of misrecognition within a context of ableism. The literature on the politics of recognition highlights the role of appropriate recognition in affirming the status and entitlements of persons and in providing the semantic tools and authority to develop and effect strong self-understandings. Misrecognition, by contrast, issues in what Misha Strauss has labeled harms of exclusion and of demoralisation.16 In the absence of appropriate recognition,
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she says, persons may be devalued or rendered invisible, and this lack of status reduces their ability to shape the meanings of their community, to be heard, and thereby to secure the social goods that are available and needed. Misrecognition can also compromise the personal goal of developing a strong identity and an effective agency. Where the dominant semantic world offers no appropriate iconic images, or, worse, contains derogatory ones, persons may lack the resources to develop a positive self-understanding. Indeed, they may internalise the dominant, derogatory images, thus undermining the pos-sibility of articulating their own reality and being effective agents within it. The message of genohype may well have just such a subordinating impact on persons with disabilities. Not only does genohype reflect a narrow, medicalised understanding of health; it also dichotomises and essentialises identities. Because of the grandiose claims made on behalf of genetics – in particular, that genetic discoveries are discoveries about what it really is to be human – and because genetics research takes place in an allegedly therapeutic context, essentialised human and healthy identities overlap. “What is it that distinguishes the human from the non-human?” merges with “What is it that distinguishes the healthy from the unhealthy?” so that to deviate from genetic human normalcy is to have a questionable human identity. This may have two undesirable consequences: the subordination of the ‘deviant’ group, and either its neglect or ‘therapeutic’ intervention in the name of equality to raise its members to an acceptable level of humanness. The implications of this conflation of humanness with ‘normal’ health can be dire, as demonstrated by Michele Wates’ critique of the movement to facilitate physician assisted suicide in the United Kingdom.17 Wates, who appeared before the House of Lords Select Committee to argue against the passage of Lord Joffe’s draft bill ‘Assisted Dying for the Terminally Ill,’ cites four dangers to persons with disabilities arising from its acceptance. Insisting that the bill be considered in the context of common assumptions about disability and in the framework of rights rhetoric, she argues that language in the bill intended to limit its scope would soon fail to be effective. Key terms, such as ‘terminal’ are open to interpretation, and could either be applied to disabled persons who do not view themselves as terminal, or to healthy persons who claim a right not to be discriminated against when seeking physician assistance to die. Wates chillingly recounts that she has never heard her own condition, multiple sclerosis, described as terminal until finding it so described in the literature promoting physician assisted suicide. Apart from the inherent slipperiness of key concepts like ‘terminal’ and the impact of ableist assumptions on their interpretation, Wates points out that with the passage of liberal legislation on physician assisted suicide, physicians’ duty of care will be subtly changed. Whereas the current prohibition of active euthanasia limits physicians’ duties to healing or palliating, the euthanasia option will require them to consider the advisability of offering care rather than offering termination. In this setting, Wates fears that
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the common myths about the low value of life for the disabled will push physicians towards the ‘death option’ and away from, for instance, treating depression. Currently, the prohibition on active euthanasia preserves at least a formal parity of worth amongst the lives of patients and removes the burden and potential bias of such judgments. The social model of disability recognises that much of the suffering associated with disability is a function of lack of social support, and Wates notes that greater inclusiveness, better services, and adequate financial assistance for the disabled have a price tag – one which the euthanasia option would significantly reduce. It would be all too tempting for countries, medical practices, and families to steer policies and persons towards the euthanasia option rather than invest in the amelioration of disability and suffering. In The Netherlands, for example, where euthanasia has been practiced for some time, there has been a reduction in palliative services.18 Furthermore, Wates considers that the conflict of interest generated by the cost of caring for the disabled and the very ill will exert an unacceptable pressure on persons to seek death. As she says, whether the pressure is external or has been internalised, it would call into question the voluntariness of requests for death in many cases, and there would be little incentive to scrutinise these requests adequately. Arguably, then, as genohype impacts on the semantic world, particularly as it is mediated by the social practices of reproductive monitoring and manipulation, it both expresses and effects the reduced status of persons with disabilities, by sending the negative message that they are deviant and unwelcome, by problematising their inclusion, identities and agency, and by putting them at risk of “therapeutic correction”or “merciful” termination in the name of equality. 5.
Harm, Equality and Dignity I noted earlier that critics of ‘genohype’ see anti-discrimination approaches to securing equal status for persons with disabilities as wrongheaded, and it should now be obvious why this is so. Anti-discrimination approaches operate in a knowledge/power system that frames equality as sameness, leaving underlying norms unchallenged, and applauding or even imposing conformity. When equality is seen as having the same initial opportunities (including the same initial genetic endowment), the stage is set for both the devaluing of difference and intervention to eliminate it. But must we accept the understanding of equality that is based upon the notion of sameness of initial endowment and thus allows for the marginalisation and devaluing of disability and other forms of difference? An alternative, recently offered by Meir Dan-Cohen, invites us to frame equality in terms of a principle of dignity, which takes as foundational the equal moral worth of all persons. Unlike the sameness version of equality, and in particular its articu-lation in the harm principle which governs Anglo-American jurisprudence, the dignity principle offers an understanding of equality that will accommo-date the ‘moral
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residue’ without jeopardising diversity.19 In a complex argument, Dan-Cohen advocates replacing the harm principle with the dignity principle which, he claims, is better able to “defend the equal moral worth of every human being,” and to accommodate diversity. According to Dan-Cohen the harm principle, as traditionally understood, fails to account for our judgment of culpability in three revealing American legal cases. The ‘moral residue’ in these cases is dignity, and our condemnation of the behaviour in these cases reveals weighty moral commitments that elude analysis under the rubric of the harm principle, he claims. The first case, which he calls ‘rape by deception,’ is one in which a physician rapes his female patients under the auspices of a routine gynecological examination.20 The women are unaware that this has taken place, and (until the acts come to light) they are neither physically nor psychologically damaged. It is therefore hard to see how, on a traditional understanding of the harm principle, they could be viewed as harmed. Harms are defined as wrongful setbacks of interest, and interests are limited to physical and psychological wellbeing (welfare interests) and significant, settled aspirations (ulterior interests). Had the actions never come to light, neither the welfare nor the ulterior interests of the violated women would have been set back, as required by the harm principle in order for the action to be condemned. Furthermore, to claim that our condemnation can be grounded in a ruleutilitarian concern for overall long-term well-being (a legitimate concern) misses the point, since our abhorrence attaches to the acts them-selves and our outrage is on behalf of the particular women who suffered them. The acts, concludes Dan-Cohen, are abhorrent because they are indignities to the women who are “ends in themselves,” beings of equal moral worth. The ‘moral residue,’ once interests are subtracted, is dignity. One might argue, contra Dan-Cohen, that insofar as the sexual contact was non-consensual, it is the women’s interest in autonomy that was violated and that this is something which the harm principle can accommodate (since consent to the compromise of an interest generally renders an act technically harmless). To block this objection, Dan-Cohen moves to his other examples. Consider, he says, our reaction to the idea of consensual slavery. One could hypothesise a situation where the slavery was entirely benevolent, and the slave had as much effective autonomy as many non-slaves regarding matters of daily life; nevertheless, we would condemn such an arrangement as inherently unjust because, says Dan-Cohen, it violates the slave’s dignity. Two other examples, taken from American law, further illustrate the point. In State v Braxton21 the appellate court refused to uphold a lower court sentence which allowed the convicted to choose castration over thirty years imprisonment for sexual misconduct; and in State v Brown22 the court refused a defense of consent by a man who claimed that his wife consented to being beaten whenever she drank alcohol. These examples, he argues, reveal a moral commitment to dignity and equal moral worth that is not exhausted by welfare- or autonomy-based
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analyses, and which is therefore difficult to capture in a harms-based framework. At this point we have a framework for understanding what is at stake in the DDO and its articulation in expressivism. The practice of PGD can arguably be seen as a practice of disrespect for the dignity and equal moral worth of persons with disabilities, insofar as (contra its public representation) its function is to preclude persons with disabilities from life. The disrespect is a moral residue, an attitudinal feature of the practice that is not reducible to outcomes or intentions of particular ‘players’ but is implicit in a correct description of the practice. A correct description of the practice involves assessing the ‘official story’ of its values and goals in light of the realities of the practice. The attitude of disrespect, a deontological feature, need not ex-haust the moral assessment of the practice; however, as a feature of the practice it can be considered a harm. While Dan-Cohen wishes to abandon the harm principle in favour of the principle of dignity, for our purposes it is enough to claim that disrespect, as an inappropriate attitude having moral force independently of acts compromising welfare or autonomy, is a symbolic harm which renders the practice of PGD morally questionable. Dan-Cohen’s discussion of the dignity principle has contributed in two ways to the present project of critiquing genohype. First, it has allowed us to broaden our understanding of harm. The broader understanding of harm, in turn, will illuminate the stake persons have in recognition and its associated political and personal goods: semantic authority, appropriate self-understanding, and effective agency. A community committed to respecting equal worth and dignity must recognise the harmfulness of the normative paradigms of humanness and health, and must work to remedy them by ensuring the diversity of cultural and semantic space. This may involve positive measures, such as foregrounding alternative identities in the media and diversifying health services, or negative measures, such as the censoring of derogatory representations and utterances in public space. All such measures should be prompted and guided by disabilities activists who obviously have epistemic privilege. Further to the diversification of health services and the protection of semantic space, remedial measures should include recognising affronts to dignity as bases for alleging unequal and harmful treatment. 6.
Conclusion The potential for genetic testing and intervention to reinforce essentialised norms of health and humanity is significant, especially when combined with a narrow understanding of harm and an unrevised understanding of equality. As I have argued, the routinisation of genetic testing in the reproductive context risks subordinating persons with disabilities by sending a message that they are unwelcome, and by denying them semantic authority in the cultural space where identities are formed and agency strengthened. While an exclusively interest-based understanding of harm will not be able to capture
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these inequalities, the dignity principle, which targets affronts to moral worth through subordinating practices, is more promising. In identifying such affronts and in devising and evaluating remedies persons with disabilities or their designates should be granted privileged status. And finally, a finding of symbolic harm does not necessarily mean a practice must be curtailed. For policy-making is ethically complex, and the ethical weight of a derogatory message, when measured in relation to other relevant ethical concerns, such as individual freedom, the reduction of suffering, and distributive justice, may not trump. My goal has simply been to ensure that it is acknowledged.
Notes 1 Timothy A. Caulfield et al., “Providing Genetic Testing through the Private Sector: A View from Canada,” ISUMA: Canadian Journal of Policy Research 2:3 (2001): 72-81. 2 Kerry Taylor and Roxanne Mykitiuk, “Genetics, Normalcy and Disability,” ISUMA: Canadian Journal of Policy Research 2:3 (2001): 65-71. 3 See, for instance, Susan Wolf’s “Beyond ‘Genetic Discrimination’: Toward the Broader Harm of Geneticism,” Journal of Law, Medicine and Ethics, 23 (1995): 345-53. 4 Susan Wendell, The Rejected Body, (New York: Routledge,1996), 153. 5 Laura Hershey, “Choosing Disabilities,” Ms. Magazine, July-August 1994, 30. 6 Marsha Saxton, “Disability Rights and Selective Abortion,” in Abortion Wars: A Half Century of Struggle, 1950-2000, ed. Rickie Solinger (Berkeley and Los Angeles: University of California Press, 1997), 391. 7 Laura Purdy, Reproducing Persons (Ithaca and London: Cornell University Press, 1996), 57. 8 Bonnie Steinbock, “Disability, Prenatal Testing, and Selective Abortion,” in Prenatal Testing and Disability Rights, eds. Erik Parens and Adrienne Asch (Washington DC: Georgetown University Press, 2000), 108-123. 9 Stuart Oultram, “Disability, Reproductive Intervention and Moral Consistency,” available through the Making Sense of: Health, Illness and Disease conference website: http://www.cybercultures.net/hidmain.htm
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10 Oultram, 2. 11 Adrienne Asch, “Why I Haven’t Changed My Mind about Prenatal Diagnosis: Reflections and Refinements,” in Prenatal Testing and Disability Rights, eds. Erik Parens and Adrienne Asch (Washington DC: Georgetown University Press, 2000), 234-258. 12 Bruce Jennings, “Technology and the Genetic Imaginary: Prenatal Testing and the Construction of Disability,” in Parens and Asch, 124-144. 13 Jennings, 137. 14 Eva Feder Kittay with Leo Kittay, “On the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My Son,” in Parens and Asch, 165. 15 Nancy Press, “Assessing the Expressive Character of Prenatal Testing: The Choices Made or the Choices Made Available?” in Erik Parens and Asch, 214-233. 16 Misha Strauss, “The Role of Recognition in the Formation of SelfUnderstanding” in Recognition, Responsibility and Rights: Feminist Ethics and Social Theory, eds. Robin N. Fiore and Hilde Lindemann Nelson (Lanham: Rowman and Littlefield, 2003), 37-52. 17 Michelle Wates, “Qualifying for the right to die - a dubious privilege: assisted dying for the terminally ill,” available through the conference website: http://www.cybercultures.net/ hidmain.htm 18 Herbert Hendin, et al. “Physician-assisted suicide and euthanasia in the Netherlands: lessons from the Dutch,” Journal of the American Medical Association 277 (1997): 1720-1722. 19 Meir Dan-Cohen, Harmful Thoughts (Princeton and Oxford: Princeton University Press, 2002). 20 State v Minkowski. 204 Cal. App. 2d 832; 23 Cal. Rptr. 92 (1962). 21 State v Braxton. 326 S.E. 2d 410 (S.C. 1985). 22 State v Brown. 364 A2d 27 (N.J. Super Ct. App.Div.1977)
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Bibliography Asch, Adrienne. “Why I Haven’t Changed My Mind about Prenatal Diagnosis: Reflections and Refinements.” In Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch, 234-258. Washington DC: Georgetown University Press, 2000. Boetzkes, E. “Sex Selection and the Charter” (1994) VII Canadian Journal of Law and Jurisprudence 173. Caulfield, Timothy , Michael Burgess and Bryn Williams-Jones. “Providing Genetic Testing through the Private Sector: A View from Canada,” ISUMA: Canadian Journal of Policy Research 2:3 (2001):72-81 Dan-Cohen, Meir. Harmful Thoughts. Princeton and Oxford: Princeton University Press, 2002. Hendin, Herbert, C. Rutenfrans; Z. Zylicz. “Physician-assisted suicide and euthanasia in the Netherlands: lessons from the Dutch,” Journal of the American Medical Association 277 (1997): 1720-1722. Hershey, Laura. “Choosing Disabilities,” Ms. Magazine, July-August 1994, 30. Jennings, Bruce. “Technology and the Genetic Imaginary: Prenatal Testing and the Construction of Disability,” in Prenatal Testing and Disability Rights, edited by Parens and Asch, 124-144. Washington, D.C.: Georgetown University Press, 2000. Kittay, Eva Feder with Leo Kittay. “On the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My Son,” in Prenatal Testing and Disability Rights, edited by Parens and Asch, 165-195. Washington, D.C.: Georgetown University Press, 2000. Oultram, Stuart. “Disability, Reproductive Intervention and Moral Consistency,” available through the Making Sense of: Health, Illness and Disease conference website: http://www.cybercultures.net/hidmain.htm Parens, Erik and Adrienne Asch. Prenatal Testing and Disability Rights. Washington, D.C.: Georgetown University Press, 2000. Press, Nancy. “Assessing the Expressive Character of Prenatal Testing: The Choices Made or the Choices Made Available?” in Prenatal Testing and Disability Rights, edited by Parens and Asch, 214-233. Washington, D.C.: Georgetown University Press, 2000.
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Purdy, Laura. Reproducing Persons. Ithaca and London: Cornell University Press, 1996. Saxton, Marsha. “Disability Rights and Selective Abortion,” in Abortion Wars: A Half Century of Struggle, 1950-2000, edited by Rickie Solinger, 2391. Berkeley and Los Angeles: University of California Press, 1997. Steinbock, Bonnie. “Disability, Prenatal Testing, and Selective Abortion,” in Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch, 108-123. Washington DC: Georgetown University Press, 2000. Strauss, Misha. “The Role of Recognition in the Formation of SelfUnderstanding” in Recognition, Responsibility and Rights: Feminist Ethics and Social Theory, edited by Robin N. Fiore and Hilde Lindemann Nelson, 37-52. Lanham: Rowman and Littlefield, 2003. Taylor, Kerry and Roxanne Mykitiuk. “Genetics, Normalcy and Disability,” ISUMA: Canadian Journal of Policy Research 2:3 (2001): 65-71. Wates, Michelle. “Qualifying for the right to die - a dubious privilege: assist-ed dying for the terminally ill,” available through the Making Sense of: Health, Illness and Disease conference website: http://www.cybercultures.net/ hidmain.htm Wendell, Susan. The Rejected Body: Feminist philosophical reflections on disability. New York and London: Routledge. 1996. Wolf, Susan. “Beyond “Genetic Discrimination”: Toward the Broader Harm of Geneticism,” Journal of Law, Medicine and Ethics, 23, 1995, 345-53.
Note on Contributor Dr. Elisabeth Gedge is an Associate Professor in the Department of Philosophy at McMaster University in Hamilton, Ontario, Canada. Her primary areas of research focus are reproductive ethics, the ethics of end-of-life decisionmaking, and feminist philosophy of law.
Alcoholism: ‘Correction’ and the Changing Notions of ‘Recovery’ Donavan Rocher Abstract Presently, alcoholism is most commonly described in popular discourses as being a disease, and the ‘loss of control’ while drinking that the ‘alcoholic’ experiences is described as being symptomatic of an ‘alcoholic identity’. These ideas are informed by the organisation of Alcoholics Anonymous and illustrate the considerable influence of AA as exemplified in the work of Marianna Valverde. Due to recent scientific research and major sociological shifts in Western societies as a result of the rise of ‘neo-liberalism’, Nikolas Rose argues that we are witnessing the beginning of a shift away from the deviant identity to the development of new pharmaceutical regimes that ‘correct’ the genetic errors that are the basis for an ‘alcoholic identity’. Although, new pharmaceutical regimes for alcoholism are only being used in experimental research, the scientific theories that they are based upon are already entering into popular culture. This paper is an attempt to explore Rose’s argument by illustrating how contemporary scientific discourses about alcoholism are entering into popular discourses. By exploring self-help literature, the intersections between the successful popularisation of the serotonin hypothesis of depression and current theories about alcoholism will be analysed. Similarly to depression, alcoholism is now being theorised in terms of malfunctions in the neurotransmitter system. Keywords: Alcoholism, neurochemical subjectivity, regulating the body, disorders of desire. 1.
Introduction Consuming alcoholic beverages is a common practice in Western societies and is routinely associated with leisure time. At the same time, frequent excessive consumption, otherwise known as alcoholism, is most commonly described in popular discourses as being a disease. The ‘loss of control’ typified by the alcoholic with respect to drinking is described as being symptomatic of an ‘alcoholic identity.’ These ideas are informed by the organisation of Alcoholics Anonymous (AA) and the considerable influence that this organisation has had on health care professionals and the institutions that work with individuals that are believed to suffer from this dependency. With respect to alcoholism, popular discourses of this ‘disorder of desire’ are presently shifting in Western societies due to recent scientific research and theory. Nikolas Rose argues that these new
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discourses of alcoholism describe it as a disorder requiring ‘correction’ for genetic errors, rather than being a symptom of a deviant identity or, in the terms of Marianna Valverde, a ‘disease of the will.’ 1 This presentation will explore and support Rose’s argument by illustrating how contemporary scientific discourses about alcoholism are entering into popular discourses. By examining self-help literature, it is possible to trace the emergence of new medical theories and regimes of treatment for alcoholism as they begin to appear in popular culture. This paper will specifically examine the books: The Sober Kitchen: Recipes and Advice for a Lifetime of Sobriety, The Craving Brain – A Bold New Approach to Breaking Free from: Drug Addiction, Overeating, Alcoholism and Gambling and The Serotonin Solution.2 By exploring these texts, the intersections between the successful popularisation of the serotonin hypothesis of depression and prescribed anti-depressants and current theories about alcoholism will be analysed. Part of the probable success of this new understanding of alcoholism is the link that has been purported to exist in the genome sequence with depression. Rose describes how depression and the scientific theoretical understanding of this disorder have been effectively marketed into popular culture. Current conceptions of ‘ourselves’ as ‘neurochemical’ beings facilitate the rationalisation of alcoholism as a malfunction in the neurotransmitter system. By linking alcoholism and depression, a pharmaceutical regime for alcoholism will most likely thrive in the marketplace to the same extent as antidepressants. Pharmaceutical companies have been able to successfully expand the sale and prescription of anti-depressants for other medical conditions, including anxiety disorders, smoking-cessation, pre-menstrual syndrome and obsessive compulsive disorders. The discourses of the new public health have shifted many of the responsibilities of the state to the individual. For example, this shift becomes apparent in the new campaigns for prevention of certain medical conditions in which the public is informed about what lifestyle changes may be made in order to either prevent or reduce one’s risk. In this manner, the strategy of public health campaigns is to position the individual as being capable and having the rationality to operate in a fashion that will ensure one’s health. Discourses such as these are rarely challenged in today’s society since they promote the idea of the autonomous individual – an ideal that is also extolled through most social and cultural institutions in North American society.3 2.
Responsibilisation of the Individual The mid-1970s may be viewed as the beginnings of the term ’lifestyle.’ During this time period, academic and professional writing began to focus on aspects of ‘lifestyle’ that were instrumental to poor health. The opinion that ‘lifestyles’ such as being sedentary, eating poorly, and others caused individuals to fall ill, resulted in the creation of a
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multitude of educational projects that aimed to inform people that it is possible to avoid illness if they modified certain behaviours. This idea of ‘lifestyle theory’ is the basis for the emergence of the concept of the ‘entrepreneurial self.’4 This self has come into existence as welfare interventionism has decreased and the ‘markets’ as the regulators of economic activity have been normalised. In this manner, this self is “the product and target of ‘neo-liberal’ forms of rule that employ technologies for ‘governing at a distance’ by seeking to create localities, entities and persons able to operate a regulated freedom.”5 With the rise of ‘neoliberalism,’ the citizen is now faced with a multitude of discourses about his/her individual responsibilities and obligations in order to remain a ‘healthy’ citizen. As state funding for research institutions associated with universities and government funded think- tanks has decreased in the postFordist period of capitalism, funding for life science research became increasingly dependent on “the pharmaceutical industry and, later, by biotech enterprises”6 Neither the production of truth nor even the production of health is sufficient to move “ the venture capitalists, patent offices, and science writers on whom [the life sciences] are increasingly dependent: they must be legitimated by the logics of product development and market share.” 7 The logic of product development also significantly influenced the conception of health in the public sphere. This new ‘will to health’ is increasingly “capitalised by enterprises ranging from the pharmaceutical companies to food retailers.”8 Moreover, the ‘will to health’ has been extended in present day society to include the maximisation of an individual’s corporeality with respect to “a kind of overall ‘well-being’ – beauty, success, happiness, sexuality and much more. It was this enlarged will to health that was amplified and instrumentalised by new strategies of advertising and marketing in the rapidly developing consumer market for health.”9 This expansion of products and services is an increasingly lucrative market that is flourishing, in part, due to the concerns of an ageing population. 3.
The Molecular Gaze The molecularisation of biology is a profound event that has had numerous ramifications and is implicated in projects that are attempting to understand the ‘code of life’ – DNA. The change in focus that has occurred in the past three decades within the life sciences have shifted attention towards the molecular level, and in order to study life at this level, complex and expensive equipment is necessary. Since most of the research in the life sciences today is conducted in labs that are funded by pharmaceutical companies and biotech enterprises, profit becomes the primary motivation for continuing research and development of knowledge. 10This motivation impacts upon the direction of research and influences the theoretical framework for the development of knowledge in
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the life sciences. For example, these companies have the capability to dictate to the researchers they employ the direction of the research they will perform and in this manner certain theories and experiments. With the scientific gaze at the molecular level, all life processes appear to have the possibility of being studied and replicated in the laboratory whereby these processes may be engineered and re-engineered in order to understand the chain of events that formed them. One example of this would be in biological psychiatry in which mental illness and mental health are being revamped by the ability to now view molecular images of the brain and the creation of drugs that are specifically manufactured to target and modify molecular reactions in neurones and synapses. Theoretically, it is now assumed that in most and maybe all cases, it may become possible to identify biological risks and with medical interventions at the molecular level that will be able to treat potential medical conditions.11 Now, how does this relate to alcoholism? Contemporary psychiatry is enthralled with the new developments in neuroscience that explain variations in mood, cognitive state, affective reflexes and behaviour in terms of anomalies in the brain – specifically malfunctions in the neurotransmitter system. One example of this is the condition of depression that may be diagnosed as the result of an anomaly in “just one of the many subtypes of one of the seven sub-families of receptors for the neurotransmitter serotonin.”12 Rose describes that even though this hypothesis had obvious scientific inadequacies, it has still become the basis of pharmaceutical drug development and the inspiration for the serotonin selective reuptake inhibitors (SSRIs). Rose states that: The central presupposition, perhaps more significant than any individual drug, was that of specificity. This presupposition was actually three sided. First, it was premised on the neurocscientific belief that these drugs could, and ideally should have a specificity of target. Second, it was premised on the clinical belief that doctors or patients could specifically diagnose each array of changes in mood, will, desire, affect as a discrete condition. Third, it was based on the neuroscientific belief that specific configurations in neurotransmitter systems underlay specific moods, desires, and affect. The three presuppositions were then mapped onto one another. 13 Thus, Prozac became the ‘prescription’ for the treatment of depression not due to “its greater efficacy in treating clinical depression, than from the belief that it was the first “smart drug,” in which a molecule was designed
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with a shape that would enable it specifically to lock into identified receptor sites in the serotonin system-hence affecting only the specific symptoms being targeted and having a low “side effect profile.” “14 As a further stage in this molecularisation, the new genomics “seeks the precise polymorphism in a particular sequence of bases in a locus in a particular gene that is correlated with a precise type of disorder of thought, emotion, or conduct.”15 This further stage in molecularisation has resulted in a shift in the way a ‘disease’ such as alcoholism is conceptualised: alcoholism is now discussed in terms of a ‘disease’ of the brain, rather than as a ‘disease of the will.’16 One example of a new treatment for alcoholism (or as termed in the DSM IV – alcohol dependency) is the use of Naltrexone. This new class of drugs is particularly of interest since it operates differently from past treatments for alcohol dependency like Antabus that act on the craving for a drink rather than making the drinker feel sick after consuming alcohol. As Rose suggests, in this new: ‘Neurochemical’ account of personhood, psychiatry no longer distinguishes between organic and functional disorders. It no longer concerns itself with the mind or the psyche. Mind is simply what the body, what the brain, does. And mental pathology is simply the behavioural consequence of an identifiable, and potentially correctable, error or anomaly in some aspect of the brain, in its neurotransmitters or receptors.17 These new developments in research with respect to alcoholism demonstrate a fundamental shift in how psychiatry theorises about the interconnections between the mind and behaviour and such theories inherently advocate that they have finally overcome the Cartesian dualism of body and soul. Behaviour is reduced to the susceptibilities resulting from genomes and their sequencing. Treatment for conditions is prescribed based on these susceptibilities and does include an examination of the social environment and other possible factors that may have informed the development of the condition. 4.
Popular Discourses of Alcoholism and Brain Chemistry in Self-Help Books Self-help literature is a resource utilised by individuals in order to understand topics that generally affect them in their own personal lives and/or the people that surround them. In addition, the latest scientific research about the specific topic being investigated is included in a manner that is accessible for a lay person. Generally, new books also receive a great deal of media fanfare and if they become successful, their contents
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begin to be reflected in public consciousness. This occurs through the repeated reference to their contents in the media by journalists, newscasters, talk-show hosts and interviewees. The method of discourse analysis utilised in my research is similar to the genealogical analysis performed by Michel Foucault. Best selling texts have been specifically chosen to illustrate how the discourses within them connect to these emerging conceptions of alcoholism. The first case study in this analysis depicts the emerging popularisation of the neurotransmitter understandings of the brain examined is The Serotonin Solution (1996) by Judith J Wurtman. Wurtman discusses how carbohydrates operate within the human body and explains their importance in the production of serotonin. In addition, she describes how serotonin operates like a stress-management system and it: Soothes our emotional turmoil and, by doing so, stops the urge to binge. Eating carbohydrates is the only way to boost serotonin levels in the brain – because even if serotonin could be put in a pill and swallowed, it cannot get into the brain from the bloodstream. For this reason carbohydrates are considered a ‘psychoactive’ food. When they are eaten in the correct ‘dose’ and without other foods that might interfere with their effect, they have the power to bring about substantial changes in our mood. 18 This self-help book is intended for an audience that suffers from binge eating, specifically addressing stay at home parents, pre-menstrual women and ex-smokers. In particular, this self-help text informs the reader of the connection between eating carbohydrates, the production of serotonin and the resulting changes in individual mood and/or behaviour. Moreover, it is imperative to highlight that the serotonin hypothesis and depression had already begun infiltrating the public consciousness through previous bestsellers such as Peter Kramer’s Listening to Prozac (1993) and Elizabeth Wurtzel’s Prozac Nation (1994). Not only does Wurtzel’s text illustrate the connections between mood and serotonin, these ideas also introduce the notion that by monitoring such levels one could ensure a positive mood. Ronald Ruden’s book The Craving Brain – A Bold New Approach to Breaking Free from Drug Addiction, Overeating, Alcoholism and Gambling (1997) incorporates many of the recent developments in scientific research with respect to theories about addiction.. Ruden describes how the neurotransmitters dopamine and serotonin are involved in cravings. Rudens states that:
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If dopamine is the “gotta have it,” serotonin is the “got it.” It is the rising dopamine that motivates us to action, and it is the attainment, the full belly, the safe place, the completed sexual act that raises serotonin. The brain is in a high dopamine and high serotonin state. Contentment floods our being. We feel safe, satisfied, and secure. The craving is gone. The ability of our brain to motivate behaviour is gone. We call this a biobalanced state.19 This explanation of the mechanisms behind addiction in the brain is very simplistic; however, it is accessible for individuals who are not educated in the life sciences and offers a basic understanding of the neurotransmitter system. In this specific example, the extension of the serotonin hypothesis and its role in addiction becomes apparent. In addition to providing a basic understanding of the neurotransmitter system, Ruden discusses the recent research that was occurring with Naltrexone. Although he does not elaborate on the possibilities of treatment that Naltrexone may offer as knowledge about this drug expands he does note that “by reducing the euphoria of alcohol and dampening the craving for another drink, it helps patients feel better and encourages them to remain abstinent.”20 Moreover, Ruden does articulate that the advances in psychopharmacology are exciting; however, he stresses that scientific advances in theory do not always translate into practice with the anticipated results. The philosophy of AA with respect to alcoholism21 and the theory that alcoholism is a disease has had a tremendous influence upon medical discourses during the twentieth century. For example, the majority of rehabilitation centres for individuals who suffer from drug and alcohol dependence in North America offer programs that are based on many of the tenets of AA. Furthermore, as stated by Barry Stimmel,”almost everyone involved in treating alcoholism now considers it a disease. This includes groups such as the American Medical Association, the American Psychological Association, the American Psychiatric Association, the American Society of Addiction Medicine, and the World Health Organization.”22 The first step of the program of AA is: “We admitted we were powerless over alcohol-that our lives had become unmanageable.” Therefore, alcoholics by definition are and will always be powerless over alcohol. In this sense, AA challenges the tenets of the discourses of the entrepreneurial self. AA members instead concentrate on trying to achieve inner peace and remaking their souls through ethical techniques.23 It is also important to note that many of the individuals who suffer from alcohol dependence may not choose to become members of AA. This becomes evident as the research of Barry Stimmel suggests when he states that “the dropout rate can be high. In one study of people
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who attended an AA meeting one month after being discharged from a detoxification unit, only 11 percent were still participating a year later. In other studies, 68 percent dropped out before the tenth meeting. But of those who attended regularly, an estimated 26 to 50 percent remain abstinent after one year.”24 Therefore, for many individuals the support that may be offered through organisations such as AA may not be viewed as a viable option. Part of this reason might be that the logic of AA is unfamiliar to individuals due to their socialisation in liberal societies that praise the values of autonomy, independence and choice. In addition, the Judeo-Christian basis of the program is problematic for many individuals in Western societies. Since Naltrexone has been Food and Drug Administration (FDA) approved, new programs have been developed that include a combination of Naltrexone and cognitive therapy. Although such programs are very recent and the long-term effectiveness of these new treatment approaches are still to be determined by future research, these programs are noteworthy in terms of how alcoholic identity may be reconfigured by these innovations in practice. These new treatment strategies do offer individuals a sense of autonomy and choice (a familiar way of operating in a contemporary liberal society) in terms of choosing to undergo a regime of treatment rather than give one’s will to a higher power and completely abstain from imbuing alcohol. Liz Scott’s The Sober Kitchen (2003) is marketed as being the first book on alcoholism and nutrition. She describes the importance of proper nutrition specifically in initial recovery when individuals who suffer from alcohol dependence are likely to be malnourished and the difficulties of adjusting to a life in sobriety can be eased by nourishing the body and ensuring that depleted vitamin and mineral reserves are replenished. Scott explicates how previous books offered very little if any nutrition advice for “the vast majority in recovery.” 25 Moreover, Scott articulates her belief that scientific research will be useful in the development of innovative approaches in the treatment of alcohol and drug dependencies. This is evident when she states that “we are now lucky to live at a time when it is possible to explore the human body and mind in vast technological detail, particularly with advanced tools that allow us to witness neurochemical activity as it happens… As studies continue and results are analysed, the connection between brain chemistry, addiction, genetics, and behaviour will thankfully be much better understood, paving the way for better treatment and ultimate prevention.”26 In common with the previous self-help books examined, she discusses the neurotransmitters dopamine and serotonin. For example, she describes how “by drastically reducing the amount of carbohydrates they eat during early recovery, some people report an increase in alcohol craving. I have heard this over and over from recovering alcoholics who, in an attempt to fix everything at once, diet early on and experiment with
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extremely low-carbohydrate eating plans.”27 The lack of consumption of carbohydrates and low serotonin production is considered in the framework of the serotonin hypothesis to result in an increase in dopamine and a craving for alcohol. Although, it should also be noted that even though the serotonin hypothesis has been contested scientifically since there has been no scientific evidence that low serotonin levels are linked to depression. 28 Scott does address the recent development of using Naltrexone for treatment of alcoholism but only discusses the use of this drug with respect to individuals who require morphine for medical purposes. She describes the recent studies that “have shown that if Naltrexone, the FDAapproved drug that blocks parts of the opioid-reward pathway and has been successful in reducing craving in some abstinent alcoholics, is administered with morphine for pain, the patient is less likely to become dependent.”29 It may be assumed that since her entire book is about abstaining from consuming any amount of alcohol during recovery that she would not discuss Naltexone treatment programs and the possibilities of new treatment strategies with respect to alcoholism. Such a discussion would be controversial due to the stance of AA members, audience members that she does not wish to isolate. However, this inclusion of recent scientific research does illustrate the strong influence of scientific discourses in the popular imagination and that even most AA members would not be considered adverse to these discourses. In terms of recovery from alcoholism, recent studies indicate that much of the damage due to active drinking is reversible and new techniques in recovery may be possible in the future. Dr Nancy C. Andreasen, in Brave New Brain, suggests that tracking our brain improvement through the use of imaging techniques could serve as a powerful motivator to remain abstinent.30 Future treatment strategies may make use of imaging techniques to develop new psychopharmacological therapies in alcoholism. Moreover, these developments will certainly be utilised in the theoretical framing of scientific discourses about the logic of ‘correction’ for neurochemical reactions in the brain and aid in the successful marketing of these ideas to an awaiting populace. As neurochemical understandings of the brain with respect to alcoholism have begun to enter into the popular imagination, the acceptance of these new pharmaceutical regimes has become more likely. For example, this new pharmaceutical regime has recently been approved: Forest Laboratories, Inc announced today that Campral(R) (acamprosate calcium) Delayed- Release Tablets are now available to physicians, patients and pharmacies nationwide. Campral was approved by the U.S. Food and Drug Administration (FDA) on July 29, 2004 for the maintenance of abstinence from alcohol in patients with alcohol dependence who are
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‘Correction’ and the Changing Notions of ‘Recovery’ abstinent at treatment initiation. Treatment with Campral should be part of a comprehensive management program that includes psychosocial support. The approval of Campral was the first in nearly ten years of a treatment for alcohol dependence … The mechanism of action of Campral in maintenance of alcohol abstinence is not completely understood. Chronic alcohol exposure is hypothesized to alter the normal balance between neuronal excitation and inhibition Campral interacts with neurotransmitter systems and is hypothesized to restore the normal balance. This mechanism of action is different from that ascribed to currently available medications, which either block the “high” associated with alcoholor induce vomiting if alcohol is ingested.31
Campral is also being used in junction with Naltrexone in some research experiments in the hopes that creating a product that will combine both of these drugs in order to be highly effective in treating alcohol dependency. The press release of Campral incorporates the past theoretical understanding of the brain and the biobalanced state of serotonin and dopamine that is required for a feeling of satiation in the subject. Although, it is evident that the scientific understanding of how this particular drug works in the body is not understood it is explicitly clear that the theorisation of biobalance is being advocated in this press release. In this manner, this particular theorisation will continue to appear in other venues and be used to market other products that are developed for ‘correction’ in recovery. 5.
Conclusion In conclusion, this essay attempts to summarise how scientific developments in the study of alcoholism are entering into the popular discourses in contemporary society. Recent scientific developments are having an impact upon current understanding of alcoholism and, as Nikolas Rose has argued, shifts in thinking with respect to this condition are beginning to influence possible treatment strategies. I would like to suggest that the work of Liz Scott is the beginning of a new market phenomenon in which diets, food products and behaviour modifying procedures will soon be sold and utilised for ‘persons in recovery.’ As Judith Wurtman describes in her text, food products or ‘nutraceuticals’ that are able to not only nourish the body but also enhance certain chemical processes in the brain. These products have become available in supermarkets and health food stores (i.e., nutritional bars that state they boost memory, water that contains vitamins and minerals). It is reasonable to suggest that nutraceuticals for ‘persons in recovery’ will soon be hitting
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the grocery shelves and that books describing the ways that individuals may make ‘corrections’ to their brain chemistry by monitoring and adjusting for the levels of certain neurotransmitters in order to arrest cravings will be published in the near future. These types of products will be very profitable and the scientific research and development required to create them is most likely already occurring. In addition, the knowledge that has been produced from this scientific research is shaping a public perception that alcoholism is an imbalance in the neurochemical structure of the brain rather than a ‘disease of the will.’ Moreover, this research is actively shaping treatment options based upon pharmaceutical regimes, such as those that have already been approved by the FDA and tested in rehabilitation centres in North America. Pharmaceutical companies are highly influential in the process of changing public perceptions as illustrated in the case of depression. The successful popularisation of this neurochemical account of alcoholism is already beginning to occur even though the connection between serotonin levels and depression have never been scientifically proven, a fact that does contest the validity of the serotonin hypothesis.
Notes 1 Nikolas Rose, “The Neurochemical Self and Its Anomalies,” in Risk and Morality, ed. Richard V. Ericson and Aaron Doyle (Toronto: University of Toronto Press, 2003), 407-437; Mariana Valverde, Diseases of the Will: Alcohol and the Dilemmas of Freedom (New York: Cambridge University Press, 1998). 2 Ronald A. Ruden, The Craving Brain – A Bold New Approach to Breaking Free from: Drug Addiction, Overeating, Alcoholism and Gambling (Second Edition) (New York: HarperCollins, 2000 (1997); Liz Scott, The Sober Kitchen – Recipes and Advice for a Lifetime of Sobriety (Boston: The Harvard Common Press, 2003); Judith Wurtman, The Serotonin Solution (New York: Fawcett Columbine, 1996). 3 Deborah Lupton and Alan Petersen, The New Public Health: Health and Self in the Age of Risk. (London: Sage Publications, 1997), 175. 4 Deborah Lupton, The Imperative of Health: Public Health and the Regulated Body. (London: Sage Publications, 1995) ,xii. 5 Lupton, The Imperative of Health, xii. 6 Nikolas Rose, “The Politics of Life Itself” Theory, Culture and Society 18(6) (2001):15. 7 Ibid., 16. 8 Ibid., 18. 9 Ibid., 21. 10 Ibid., 22.
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11 Nikolas Rose, “The Neurochemical Self,” 409. 12 Ibid, 410. 13 Nikolas Rose, “Neurochemical Selves” Society (November/December, 2003b), 54. 14 Rose, “Neurochemical Selves,” 55. 15 Rose, “The Neurochemical Self,” 410. 16 In Diseases of the Will: Alcohol and the Dilemmas of Freedom, Mariana Valverde develops a socio-historical analysis that describes alcoholism as being a ‘disease of the will’. She argues that the genealogy of alcoholism should be traced back to the early studies of J.E.D. Esquirol and his collaborators, who were “interested in pursuing studies of that grey area between madness and reason conceptualized in the early nineteenth century as partial insanity. “Monomania” was the main term employed in France, and to some extent elsewhere, to initially map and occupy that liminal zone. In the English-speaking world, a similar move was effected through the category of moral insanity.”(1998:45) 17 Rose, “The Neurochemical Self,” 413. 18 Judith Wurtman, The Serotonin Solution .(New York: Fawcett Columbine, 1996), 9. 19 Ruden, 19. 20 Ruden, 84. 21 Valverde describes how the ideas about alcoholism in AA have influenced medical discourses such as the work of E. M. Jellinek. She specifically notes: “What is perhaps the most famous text in the history of alcoholism in English-speaking countries, E.M Jellinek’s 1960 The Disease Concept of Alcoholism (still widely cited today), has a number of different ways of defining alcoholism, but the main criterion distinguishing those people who drink heavily but are not “addicted” from those who are truly diseased is that the latter group suffers from “loss of control.” Jellinek states that there are several types of alcoholics who drink as much as the worst addict, even to the point of suffering from cirrhosis of the liver; but they drink because they want to, not because they feel compelled to do so. Since they do not suffer from “loss of control: they are therefore not diseased, even though they are alcoholic.” (Valverde, Diseases of the Will, 25. 22 Barry Stimmel, Alcoholism, Drug Addiction, and the Road to Recovery – Life on the Edge. (New York: The Haworth Press, 2002), 108. 23 Valverde, 140. 24 Stimmel, 118. 25 Liz Scott, The Sober Kitchen – Recipes and Advice for a Lifetime of Sobriety. (Boston: The Harvard Common Press, 2003), xii. 26 Ibid, xii. 27 Ibid, 32.
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28 J.R. Lacasse and J. Leo, “Serotonin and depression: A disconnect between the advertisements and the scientific literature.” PLoS Med (2(12), 2005), e392. 29 Scott, 290. 30 Nancy C. Andreasen, Brave New Brain: Conquering Mental Illness in the Era of the Genome. (New York: Oxford University Press, 2001). 31 Charles Triano, “First new treatment for alcoholism in 10 years, now Campral(R) (acamprosate calcium)” Medical News Today,12 Jan 2005.
Bibliography Andreasen, Nancy C. Brave New Brain: Conquering Mental Illness in the Era of the Genome. New York: Oxford University Press, 2001. Alcoholics Anonymous. (New York City: Alcoholics Anonymous World Services, 1955 [1939]). Deleuze, Gilles. “Postscript on Control Societies.” Negotiations. New York: Columbia University Press, 1995. Jellinek, E.M. The Disease of Alcoholism. New Haven: Hillhouse Press, 1960. Lacasse , Leo J. “Serotonin and depression: A disconnect between the advertisements and the scientific literature” PLoS Med (2(12)2005), e392. Lupton, Deborah. The Imperative of Health: Public Health and the Regulated Body. London: Sage Publications, 1995. Lupton, Deborah and Alan Petersen. The New Public Health: Health and Self in the Age of Risk. London: Sage Publications, 1997. Rose, Nikolas. “The Neurochemical Self and Its Anomalies.” Risk and Morality ed. Richard V. Ericson and Aaron Doyle. Toronto: University of Toronto, 2003, 407-437. Rose, Nikolas. “Neurochemical Selves” Society, November/December, 2003b. Rose, Nikolas. “The Politics of Life Itself” Theory, Culture and Society 18(6) (2001): 1-30.
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Ruden, Ronald A. The Craving Brain – A Bold New Approach to Breaking Free from: Drug Addiction, Overeating, Alcoholism and Gambling. (Second Edition). New York: HarperCollins Publishers, 2000 (1997). Scott, Liz. The Sober Kitchen – Recipes and Advice for a Lifetime of Sobriety.(Boston: The Harvard Common Press, 2003. Sournia, Jean-Charles. A History of Alcoholism. Cambridge: Basil Blackwood, 1990. Stimmel, Barry. Alcoholism, Drug Addiction, and the Road to Recovery– Life on the Edge. New York: The Haworth Press, 2002. Triano, Charles. “First new treatment for alcoholism in 10 years, now Campral(R) (acamprosate calcium)”Medical News Today 12 Jan 2005. 14 May, 2005. http://www.medicalnewstoday.com/printerfriendlynews.php? newsid=18794 Valverde, Mariana. “Targeted Governance and the Problem of Desire.” Risk and Morality ed. Richard V. Ericson and Aaron Doyle. Toronto: University of Toronto, 2003, 438-458. Valverde, Mariana. Diseases of the Will: Alcohol and the Dilemmas of Freedom. New York: Cambridge University Press, 1998. Walby, Catherine. The Visible Human Project. London: Routledge, 2000. Wurtman, Judith. The Serotonin Solution. New York: Fawcett Columbine, 1996.
Note on Contributor Donavan Rocher is a student in the Joint Doctoral Program in Communication at Concordia University. He is Associate Editor for the Graduate Researcher Consortium Journal and a member of the [ctrl] Collective.
Part 4 Representing Pain: Interdisciplinary Perspectives
Perceptions of Pain in Contemporary Zimbabwean Literature: Personal Public Narratives in Yvonne Vera’s The Stone Virgins Zoë Norridge Abstract Offering testimony to the disabling violence of the colonial project is a key feature of theoretical approaches to African literature. But rather than focussing solely on witnessing the infliction of pain, contemporary writers are also exploring the possibilities of living with unforgettable pain. Zimbabwean novelist Yvonne Vera is one such writer. Vera’s 2002 novel, The Stone Virgins tells the story of two sisters who are attacked by a dissident in the early years of independence. The attacker beheads one of the sisters and cuts the lips off the other. The narrative surrounding this incident is an exploration of the social currency of the body and strategies for survival in a physically uncertain world. This paper asks what Vera’s fiction can add to existing writing about the 1980s Zimbabwean Matabeleland violence. Pain descriptions from The Stone Virgins are then compared with the accounts of real pain patients to explore the expressive role of literature in a medical context. Finally, the value and ethical basis of these comparisons are called into question. Keywords: Yvonne Vera, Zimbabwe, Matabeleland, pain, Stone Virgins, war, mutilation, literature, fiction 1.
Introducing pain in African literature “[Pain is] a uniquely complex area of human experience: one that is unlike anything else - precisely because it is like almost everything else, at least in some respect”1 Professor Michael Halliday
African literature is no stranger to pain narratives. From traumatic depictions of colonial occupations to accounts of ongoing poverty and health inequalities, both mental and physical suffering remain a constant theme. As M.A.K Halliday suggests, these pain narratives are extremely complex, touching as they do on many of the key themes for current African literary criticism such as nationalism and gender. They are not, however, the only theme and monolithic representations of Africa as a place of disease and death, still common in the European media today, sustain unhelpful and inaccurate stereotypes. Any study of African pain narratives is complicated by the power of these generalisations and the
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enduring ideological complexity of international identity politics. In an attempt to avoid contributing to a canon of reductive oversimplifications, this chapter focuses on one specific text by a contemporary Zimbabwean novelist. The Stone Virgins is the last text Yvonne Vera published during her lifetime.2 News of her death in April 2005 shocked many who mourned the loss of one of Zimbabwe’s most emotive and eloquent writers. Vera’s complex, poetic texts carry within them an insidious sense of sadness, a feeling for the tragedy of people frustrated by surroundings and circumstance. Her five novels and short stories are located in the Zimbabwean past, treating taboo subjects such as incest and abortion through descriptions of the personal lives of women. Vera’s most recent novel, The Stone Virgins was her first novel to treat post-independence Zimbabwe. Set in Matabeleland in the 1980s, it describes the devastating civilian impact of dissident guerrilla attacks and violent government oppresssions. The pain she depicts is a pain of violent causation – harm infliction through mutilation, rape and burning alive. Nonceba, the main female protagonist is attacked by a dissident guerrilla soldier in her home. The terrified woman watches her sister being beheaded, before the attacker rapes her and cuts off her lips. The rest of the narrative forms an attempt to make sense of this violence, and describes Nonceba learning to live with her broken body and mind. This chapter asks whether Vera’s complex fictional pain narrative can add anything to our understanding of the Matabeleland troubles in particular and experiences of pain in general. If so, how does the novel reflect and interact with the perceptions of real pain patients? These questions will be approached with reference to other written accounts of 1980s Zimbabwean violence and insights from the world of pain studies. This use of pain theorists when analysing African literature is not straightforward. Although pain researchers come from a wide range of disciplines, they are predominantly located in Europe, the United States and Canada. Biomedical research has had a tendency to categorise and pathologise, looking for diagnostic criteria to facilitate practical interventions in the context of national healthcare systems founded on specific expectations and beliefs. More culturally focussed anthropological studies of pain by researchers such as Arthur Kleinman and his North American colleagues provide richer frameworks for literary analysis, but are still mostly focussed on the West.3 In Africa, the ethnographic work of medical anthropologists rarely seems to engage with African writers themselves. So in an attempt to balance its approach, this paper consults as many Zimbabwean sources as possible and continually returns to Vera’s text, the source of the pain themes discussed.
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Perceptions of pain - the privileged role of fiction The Stone Virgins explores a contested period of Zimbabwe’s history, contributing an intimate and intriguing narrative to the existing historical and literary canon. As the Matabeleland events gradually became public knowledge, Zimbabwean and international historians and human rights workers continued to debate what exactly happened during this difficult period of violence. By fictionalising murder and mutilation that many have argued did take place, the novel explores a realm of past possibilities and uncertainties for their aesthetic and ethical ambiguities. Vera does not claim to add a factual account to the existing debate or offer access to a so far undiscovered truth or metastory. Instead she asks us to imagine what alleged events might mean for individuals that lived through them. This section asks whether this is purely an aesthetic awareness raising exercise, or whether such fiction actually adds to our understanding of the traumatic past. The second half of The Stone Virgins, which forms the focus here, is specifically set between 1981 and 1986. Social scientists and historians researching this period have conducted extensive interviews with civilians and consulted articles in local media. But despite the personal and anecdotal nature of many of their sources, academic texts and policy reports tend to be focussed on providing factual evidence to inform understandings of events in the public sphere. For example, the Catholic Commission for Justice and Peace report Breaking the Silence, Building True Peace: A Report on the Disturbances in Matabeleland and the Midlands 1980-1988 concentrates on practical considerations and violent case studies without in depth analysis of the emotional impact of events.4 The violent nature of much of the material available means that pain is constantly implied in this research, but never explored in depth. The divergence of the historical and the literary treatment of events can be illustrated by comparing Vera’s novel to a historical text. Terrence Ranger’s historical analysis of Matabeleland, Violence and Memory, was published whilst Vera was writing The Stone Virgins. He writes of the post-Independence violence: Some dissident murders introduced a new level of sadistic cruelty. In an infamous Lupane case, a headmaster’s wife was forced to cut off her husband’s head. In another instance, a son was forced to kill his father after the latter was accused of informing on a dissident. In a widely cited Nkayi case, a second wife was forced to cut off the hands of her husband. Civilians also testified to two cases of mutilation by cutting off lips or ears.5
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In Ranger’s text, this account is accompanied by various footnotes detailing the location and date of interviews in which these events were mentioned. As discussed earlier, the emphasis is on providing evidence. Vera on the other hand, takes the incident of the lip mutilation and turns the event into a novel.6 She uses her fictional writing to explore what such emotive facial mutilation means for a multifaceted human being embedded in a social context. Vera’s text also mentions a woman who was forced to cut off her husband’s head with an axe.7 Yet, in contrast to Ranger’s empirical reporting, this incident is introduced by the hospitalised woman’s traumatised and uncertain screams and develops into a meditation from Nonceba’s perspective as another wounded woman. Her narrative is openly emotional and explicitly painful in a uniquely personal manner. Whilst the historical text concentrates on accounts of violent actions, Vera’s fiction is more concerned with the perceptions of the person in pain. At first sight then it might seem clear that Vera’s text offers us a deeper insight into pain narratives than more factually oriented historical accounts. However, first person accounts of this period do exist. So we can also ask whether The Stone Virgins adds anything to these ‘real life’ narratives. Most of the available testimonial accounts of these years of violence in Matabeleland are mediated by a third party. Quotations and case studies in historical analyses such as Ranger’s or evidence reports such as Breaking the Silence are selected and edited by academics.8 Even collections focussing exclusively on testimonial narratives, such as Irene Staunton’s Mothers of the Revolution (which deals with the liberation struggle in general) are shaped by interviewers, translated and edited.9 Testimonial narratives from Matabeleland are also substantially affected by a persistent climate of fear. Many of the women Irene Staunton interviewed seem reluctant to speak in any detail about memories of violence which implicitly criticise the current government. And this situation is surely not helped by the contributor’s accounts being published alongside their photographs, real names and locations. Equally, the Breaking the Silence report remarks that many of the civilians the researchers attempted to interview in Matobo (Kezi) were too afraid to talk.10 Where violence is mentioned in testimonial accounts the focus, much like more historical accounts, is on what happened rather than on what events meant emotionally and personally for those who witnessed or were caught up in them. Even if the Matabeleland survivors were not still living in fear, deeply personal issues can be extremely hard to explore verbally in much depth. The topics Vera broaches such as the intimacy of rape, the disturbing imaginings of the recovering patient and the person in pain’s desperate isolation from the world are not easily talked about. Even when the person interviewed has the language skill to express difficult emotions, recalling the past out loud may be too painful, embarrassing, or
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appear socially unacceptable. Even today, despite the work of many post independence women’s groups to push such issues into the public field, many women still find it hard to talk about their experiences of violence and sexual assault.11 Vera on the other hand consistently uses her talent for words and writer’s independence to broach such taboos. She dares to discuss openly pains that the victims of violence themselves may feel unable to articulate. In addition to overcoming the residual fear and taboo surrounding the Matabeleland violence, Vera’s aestheticisation of experience allows the author to generate complex and suggestive imagery, and emotionally intense and dramatic moods, in a manner difficult to achieve with conventional testimonial narratives. Over the space of the novel Vera builds up a coherent image world which both points to the tragedy of external world events and carries within it it’s own exclusive, aesthetically coded meaning. Alongside the emotive power of aestheticisation, the obviously literary nature of Vera’s texts also reminds the reader of the novel’s creative and subjective nature. Unlike more seamlessly ‘factual’ accounts of the past, Vera’s novel encourages us to observe the mediated nature of her text. The deliberate aestheticisation of experience also demands an effort on the part of the reader, an attempt to empathise with the novel’s characters and find meaning in their experiences. Vera’s complex poetic style and her novel’s inconsistencies and gaps in narration challenge the reader to make sense of the experiences described, reflecting the real pain patient’s quest to make sense of their own narrative confusions. This process of interpretation is so fruitful because it is inherently discursive, opening up meanings rather than closing them down. Vera’s acts of imagination invite the reader to join her in the living reconstruction of a past that is no longer accessible. Whilst Zimbabwe was palpably greatly in need of evidence reports to ground and shape (inter)national awareness of Matabeleland events, fiction also has a unique role to play in complicating and personalising the debate. This unique role is beautifully summarised by Indian sociologist Veena Das when she writes: In repeatedly trying to write the meaning(s) of violence against women in Indian society, I find that the languages of pain through which social sciences could gaze at, touch or become textual bodies on which this pain is written often elude me. […] Some realities need to be fictionalised before they can be apprehended.12 The key theme emerging here is that there is something specific to violent and painful stories that is particularly well addressed by fiction. Vera’s fifth novel, which builds on her previous explorations of violence and
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taboo, forms the ideal coupling of a suggestively free flowing literary style with a complex pain narrative. 3.
Narrating pain – sensations and similarities We have seen that Vera’s The Stone Virgins is a particularly rich text for the examination of pain narratives, compared with other historical and testimonial sources dealing with the Matabeleland violence. Now, to open up our field of exploration, we can ask whether Vera’s text contributes to the study of pain narratives in general. Does The Stone Virgins, consciously or unconsciously, mirror the narratives of real people in pain? This section looks at how Vera’s treatment of time and space, the structures she employs and the language and narrative voices she uses all have some resonance with pain experiences as described by pain patients themselves. Firstly let us examine the structure and chronology of Vera’s novel. The central narrative of The Stone Virgins is the story of two sisters who suffer a brutal attack resulting in the death of one and the rape and mutilation of the other. From the very beginning of the novel, which is set years before this central incident, we have the sense of an impending tragedy, a feeling that the description is leading towards a revelation. Although the story unfolds in the present tense, it also seems to be told in retrospect. At times this impression is generated by the narrator, for example when Vera writes: “She has no idea now, or ever, that some of the harm she has to forget is in the future, not in the past…”13 At other moments the characters themselves seem to have prior knowledge of what is to come. This focus around a central defining incident bears strong resemblances to narratives of real pain patients who define their lives in terms of the onset of their condition. This is at times, as Byron Good suggests, because the telling and retelling of a story helps to make sense of how and why the patient’s pain began.14 In The Stone Virgins this is explicitly seen in the way Vera repeatedly revisits the attack with differing levels of details. It also links into Arthur Frank’s theory that the pain experience forms the filter for subsequent narratives, because it is the patient’s illness that provides the motivation for remembering the past.15 Another manner in which Vera’s novel resembles patient pain narratives is in the renegotiation of space: both the internal spaces of the body and the external places where the pain experience is lived out. Initially, the sisters’ relationships with their own bodies appear to be joyful and unproblematic: “She [Thenjiwe] really does not care for much but her own motion, her own breath, her weightless courage to be loved.”16 But after Nonceba is wounded this changes. She wakes in hospital, her arms tied down to the bed, faced with a new physicality: She can feel the cloth pressing down, the smell of a medicated ointment. Her mouth is slightly open
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under the cloth. Her tongue is moving in her mouth. She is thirsty; her throat is burning. She moves her tongue over and over, searching for saliva. She wants to reach the bandage with her tongue. To loosen it. To breathe through her mouth not her nose. […] Everything is changing. She has a desperate feeling that everything has already changed, gone, not to be recovered. Nothing can be the same. Her own arms have changed, her body. Kezi, her place of birth, is no longer her own.17 The sense that the world has irrevocably changed, and that what was once accepted can no longer be taken for granted, is echoed in the words of people who are physically and/or mentally wounded describing how even every day activities are transformed into challenges to be overcome.18 The aftermath of Nonceba’s encounter with the violent Sibaso is as brutal as the incident itself. She stays in her aunt Silhe’s house, “awake, yet not truly alive”.19 The wounded mouth is “stiff, as though sewn up, stitched like the hem of a dress, folded; heavy with numbness”.20 For a while she cannot speak and is left only with her thoughts, reliving her sister’s death and circling the rupture that changed her world. The patient’s way of being in the body continues to change after her reconstructive surgery, but Nonceba’s sense of physicality is never the same as before. The passage describing Nonceba’s awakening in hospital also demonstrates how in Vera’s text physical belonging is fundamentally linked into the person in pain’s renegotiation of identity. Vera beautifully juxtaposes bodily change with geographical identity: “Nothing can be the same. Her own arms have changed, her body. Kezi, her place of birth, is no longer her own.”21 Nonceba’s relationship with her birthplace changes perhaps because she herself is no longer the same, and also because the once trusted and familiar town is now the location of terrifying memories. The settings for The Stone Virgins reflect the characters’ changing relationships with their bodies. In the novel we see violence taking place within the domestic space, resulting in removal of the patient first to a medical institution, and then to her aunt’s house for recovery. Everything that is known and safe has become foreign and survivors must be (re)moved. To continue her healing process, Nonceba finally leaves Kezi altogether and travels to the city. These two alienations, of body and place, are fundamentally intertwined. Vera also captures this sense of a world made strange in her language. She challenges the normal sequencing of words, the linguistic categorisation of experience, by pulling together divergent concepts and metaphors to reveal a fractured world view. Ato Quayson, a Ghanaian literary theorist now based in Canada, uses an analysis of the proliferation of these strange metaphorical categories to suggest that “the literary text
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somehow refracts the consciousness of trauma that percolates in the African postcolony to different degrees”.22 He argues that painful narratives form a key part of the fabric of life for any African writer. So Vera’s texts are rendered disjointed through her almost inevitable representations of traumatic acts. Quayson proposes that The Stone Virgins shows an ‘ex-centric symbolisation compulsion’, driven by an ‘epistemological enigma’, which is itself shaped by trauma.23 That is to say, the way trauma creates disjointed memories and uncertainties in real life is reflected in the structure and language used by Vera in her novels because in some sense the writer is also sick. Pathologising an entire continent of novelists is obviously not unproblematic, but the concept is compelling, particularly when we look at authorial identification with wounded literary protagonists. The Stone Virgins, in common with many other complex pain accounts in African novels, includes a bewildering array of different narratorial voices. This is potentially symptomatic of the disturbing creative writing process during which the writer attempts imaginatively to inhabit other bodies. The novelist’s fractured sense of identity also resembles the discordant perception of reality that afflicts the new patient of pain. The first person narrator surfaces at moments of extreme pain, and the ‘I’ pronoun is used for the first time by Nonceba in the initial description of the attack. Vera writes: I am waiting. I am alive, now, a companion to his every thought. I am breathing. My temples, beating. She closes her eyes and her body listens as his movements pursue each of her thoughts. She breathes. Harm.24 The narrative voice is both first and third person, both personal and removed, drawing the reader into an immediate engagement whilst also maintaining an observant perspective. As Quayson suggests, Vera herself is arguably implicated in the pain narrative here. But does this mean that all the pain narratives Vera creates are fundamentally centred on her own experiences, determined by her own sense of trauma? Or does Vera’s fiction somehow open up spaces for the description of differing experiences of pain? These very questions are based upon the premise that pain is a coherent category of existence to which experiences may be assigned or excluded and that literature is another discreet category that can be separated from oral narratives and lived experience. The next section renegotiates this divisive approach to pain and examines how Vera manages to create links between different pain experiences whilst preserving their diversity.
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Chaotic stories and polythetic pains We have seen that fiction offers a privileged space for the exploration of pain and that Vera’s work in many ways mirrors real pain narratives. However, having drawn these links between different pain experiences it is also important to ask how different pains diverge. The Stone Virgins’ many descriptions of hurt, often concerned with the central traumatic incident but also depicting different yet related events, form a picotgram of pain in constant transformation. Each transformation is coherent within its own context, yet if you tried to separate out the pain accounts and assign them to discrete categories of experience with definite meanings the text would collapse. That is to say, the word ‘pain’ does not always signal the existence of the same sort of pain. The pain of a woman forced to kill her husband with an axe is related to Nonceba’s painful witnessing of her sister’s beheading, but different since the wife feels the agony of guilt whilst Nonceba is also suffering severe physical pain from facial mutilation. Nonceba’s physical pain is related to the local store keeper’s dieing cries as his skin is burned to death but is also separate since the store keeper and the young woman have different personalities and experiences of the world and only one of them remains alive. How can we compare these pain experiences that are often described with very similar language when they have such divergent and individual meanings? A promising analytical approach to pain can be found by borrowing anthropologist Rodney Needham’s term, the ‘polythetic.’ Needham uses this term to introduce a certain fluidity into his academic approach by questioning our assumptions about categories of experience, in our context categories denoted by words such as pain, hurt and suffering. He observes that “the conventional definition of a conceptual class is that its members must possess certain properties in common.”25 However, Needham is not satisfied with this definition, and uses the work of Vygotsky and Wittgenstien to argue that classes are composed in the form of a ‘chain complex.’ This means that “the definitive attribute [of a class] keeps changing from one link to the next” since there is no consistent relationship between the elements and instead “the variable meaning is carried over” from item to item with no overarching features in common.26 Needham cites Wittgenstein’s powerful rope analogy to illustrate the concept: “The rope consists of fibres, but it does not get its strength from any one fibre that runs through it from one end to another, but from the fact that there is a vast number of fibres overlapping”. 27 This concept helps with analysing The Stone Virgins. In a linear narrative fashion (which is notably not chronological) the experiences described in The Stone Virgins are all related, can all be lined up like small threads of the textual rope. But if these pain elements, or threads, are separated out then it becomes more difficult to analyse them in terms of a common category.
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To illustrate this concept of the polythetic, let us compare the descriptions of the Matabeleland women as a collective group with the depiction of Nonceba as an individual in pain. Women’s lives in all Vera’s texts are characterised by resilience and hardship. The women of Kezi are no different. Towards the end of the first section of the novel, when independence seems to be upon them, the women celebrate their existence: They sing earth songs that leave the morning pulsating. […] Their minds a sweet immersion of joy, they float, jubilant. Their senses almost divine, uplifted; their pain inarticulate. Voices rise to the surface, beyond the dust shadows that break and glow, and lengthen. They will not drown from a dance in the searing dust, from the memories of anger and pain. They will not die from the accumulation of bitter histories, the dreams of misfortune, the evenings of wonder and dismay, which should have already killed them.28 The collective and bearable pain expressed here may initially seem to be unrelated to the pain experienced by Nonceba when her lips are cut. That pain is more immediate and intense, even ‘surprising.’29 When Sibaso hurts her “a piercing pain expands” and her body “turns numb, motionless, with a searing pain.”30 However, as the novel continues the two experiences appear to become more related. As she recovers, Nonceba remembers the “haze of days succeeding days, anger and pain, and an insistent absolute silence.”31 All these women are angered by their suffering and the silence that in Nonceba’s case is a result of her bandaged mouth seems strangely linked to the celebrating women whose pain remains ‘inarticulate.’ Memory is also key to both of the accounts, the past seen as something threatening, something to be consciously lived with and resisted. Pain here is a polythetic category tangentially linking experiences yet recognising their differences. Such a polythetic analysis of pain in The Stone Virgins reveals how different incidents are thematically linked for narrative coherence. This could initially appear to be a rather artificial aestheticisation of experience, a departure from the arguably arbitrary nature of real pain narratives. But the lines between fiction and non-fiction are not as clear cut as this might suppose. In fact, this argued aestheticisation actually links us back to real life. Pain patients themselves often talk about other people’s pains in ways that relate to their own experiences of illness. As with Vera’s representations of many different pains, these different experiences have links between them but remain diverse. Although the stories are told by one person, or written by one novelist alone, the experiences described seem to point not only towards similarities but also
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towards difference. In fact, the greatest point in common between all these pain accounts is perhaps the sense that narrative can represent some of what is experienced, but that there are other very personal aspects of experience that might lie beyond communication. It is this ‘excess,’ the suggestion that not everything can be represented and comprehended by the listener or reader, that allows for the arbitrariness of alterity even within a constructed narrative. Sociologist Arthur Frank, analysing written first person accounts of illness, identifies one type of narrative that engages with the depths of extreme experience by failing to fully articulate the essential points of difference. He writes that: The paradox of the chaotic voice is that it would seem to be incapable of storytelling. Here the losses, the pain, the incoherence of suffering become so overpowering that language cannot resocialise what has happened. In this heart of darkness, ‘the horror’ cannot be told; any telling can only point toward what happened in the vaguest terms […] what is tellable about chaos is no longer the chaos itself.32 Frank’s argument would seem to suggest that some extremes of pain resist representation and can only be pointed towards by peripheral descriptions. If we apply this to Vera’s text we see that The Stone Virgins contains many similar yet divergent descriptions of pain that do seem to gesture towards other unique and unrepresentable areas of experience. Just as the reader is asked to make sense of Vera’s occasionally difficult aestheticisations, they are also invited to either accept their impotence or attempt to intuit some understanding of these diverging holes of meaning. However, this concept of the unrepresentable chaotic is potentially problematic in the context of postcolonial Zimbabwe. Frank makes an explicit reference to Joseph Conrad’s Heart of Darkness when he writes that: “‘the horror’ cannot be told; any telling can only point toward what happened in the vaguest terms.” British colonial projects were built on the shared agreement not to represent the painful reality of those human beings who paid for the foundation of empires with their cultures and lives. So this particular trope of the unrepresentable sits uneasily with postcolonial literary theory. The Stone Virgins certainly does not describe horrific pain by avoiding talking of violent acts. Instead, Vera repeatedly revisits extremely painful incidents, reshaping them with innovative language and different narrative perspectives. But despite these careful explorations of the depths of pain, some interstitial spaces of meaning do remain unfilled. One such space can be seen when Vera describes a strange sense of emptiness and a lengthening of time in a passage describing the burning to death of a local storekeeper.33 And it is
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these gaps in narration that point towards the chasms of excessive meaning that Frank sees in the chaotic narrative, like a series of emotional black holes whose nature can only be inferred and not directly observed. 5.
Concluding thoughts on perceptions of pain Experiences are not always flowing, non-fragmented, but floating. I’m fascinated with the individual, especially the woman, especially the woman in Africa, and how they are forced to endure without having a nervous breakdown - because they cannot afford it. But they collapse inside, and I’m keen to capture that collapse.34
The Stone Virgins represents the deep internal pain of wounded protagonists through free-flowing and complex narration. Vera’s fiction beautifully captures the indeterminacy of these prolonged pain experiences, opening up interstitial spaces of similarity between diverse pain narratives whilst preserving their inevitable disparity. As the quote above illustrates, Yvonne Vera is fascinated by how the woman in Africa continues to live with pain. Here we have seen that Vera’s fiction allows us privileged access to the most intimate aspects of her female protagonist’s pain experience, aspects that are not easily explored in more historical and sociological testimonial writings. In his 1988 study of disease and representation, Sander Gilman suggests that art “can tell us little about the underlying realities [of pain] but much about the construction of our understanding of those realities”.35 As such Vera’s narrative has given us insights into how we perceive both our own and others’ pain. Gilman also reasons that the construction of art is a manner of fixing the projection of our own fears of dissolution and collapse, domesticating these fears and making them Other. To return to my comments about western generalisations in the introduction, this fixing of the Other is perhaps apparent in stereotypical media coverage of African pain that posits the West as a safe bastion of health and order. However, I would argue that examining the highly skilled writing of novelists like Yvonne Vera begins to dissolve this dichotomy. In The Stone Virgins the intimate descriptions and challenging aestheticisation of pain experiences encourage an ethical form of empathy that brings the pain experience back into our own personal worlds, albeit partially. In this way we take small steps towards making sense of health, illness and disease.
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Notes 1 M.A.K. Halliday, “On the grammar of pain,” Functions of Language 5, 1 (1998), 29. 2 Yvonne Vera, The Stone Virgins (New York: Farrar, Straus, Giroux, 2003). 3 Cf. Pain as Human Experience: An Anthropological Perspective, ed. Mary-Jo DelVecchio Good et al., (Berkeley: University of California Press, 1994). 4 Catholic Commission for Justice and Peace in Zimbabwe and The Legal Resources Foundation, Breaking the Silence, Building True Peace. A Report on the Disturbances in Matabeleland and the Midlands 1980 to 1988 (Harare, 1997). 5 Terrence Ranger et al., Violence and Memory - One Hundred Years in the ‘Dark Forests’ of Matabeleland (Oxford: James Curry, 2000), 213. 6 It is probable that Vera draws on a variety of sources for her accounts of violent incidents. Kezi, the town where The Stone Virgins is set, is also a key case study in Breaking the Silence. 7 Vera, 88. 8 Cf. Catholic Commission for Justice and Peace and Ranger et al. 9 Mothers of the Revolution, ed. Irene Staunton (Harare: Baobab Books, 1990). 10 Catholic Commission for Justice and Peace, 17. 11 Alice Armstrong, Culture and Choice: Lessons from Survivors of Gender Violence in Zimbabwe (Harare: Violence Against Women in Zimbabwe Research Project, 1998), 1. 12 Thomas Cushman, “A Conversation with Veena Das on Religion and Violence, Suffering and Language”, Hedgehog Review Volume 6, Number 1 Spring (2004). 13 Vera, 36. 14 Byron Good, Medicine, rationality and experience (Cambridge: Cambridge University Press, 2003), 146-7. 15 Arthur Frank, “Reclaiming an Orphan Genre: The First Person Narrative of Illness”, Literature and Medicine Volume 13, Number 1 Spring (1994), 4. 16 Vera, 34. 17 Vera, 90. 18 Andrew Irving, “Life Made Strange: An Essay on the Re-inhabitation of Bodies and Landscapes,” in Qualities of Time, ed. Wendy James and David Mills (Oxford: Berg, 2005). 19 Vera, 123. 20 Ibid. 21 Vera, 90.
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22 This quote is from an e-mail Ato Quayson sent me on 28/05/05 in response to my request for clarification on issues in his new work Calibrations. 23 Ato Quayson, Calibrations (Minneapolis: University of Minnesota Press, 2003), 87. 24 Vera, 68. 25 Rodney Needham, “Polythetic Classification: Convergence and Consequences,” Man Volume 10, Number 3, September (1975), 349. 26 Needham, 350. 27 Ludwig Wittgenstein, Preliminary studies for the “Philosophical Investigations”, generally known as The Blue and Brown Books (Oxford: Blackwell, 1958), 87, quoted in Needham, 350. 28 Vera, 52. 29 Vera, 69. 30 Vera, 109. 31 Vera, 149. 32 Frank, 7. 33 Vera, 38. 34 Vera interview in Bryce, 223. 35 Sander Gilman, Disease and Representation: Images of Illness from Madness to AIDS (Ithaca: Cornell University Press, 1994), 2.
Bibliography Armstrong, Alice. Culture and Choice: Lessons from Survivors of Gender Violence in Zimbabwe. Harare: Violence Against Women in Zimbabwe Research Project, 1998. Bryce, Jane. “Interview with Yvonne Vera, 1 August 2000, Bulawayo, Zimbabwe: ‘Survival is in the mouth.’” In Sign and Taboo, edited by R. Muponde and M.Taruvinga, 217-226. Harare: Weaver Press, 2002. Catholic Commission for Justice and Peace in Zimbabwe and The Legal Resources Foundation, Breaking the Silence, Building True Peace. A Report on the Disturbances in Matabeleland and the Midlands 1980 to 1988. Harare, 1997. Cushman, Thomas. “A Conversation with Veena Das on Religion and Violence, Suffering and Language” Hedgehog Review Volume 6, Number 1 (Spring 2004) consulted online at: (March 2004).
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DelVecchio Good, Mary-Jo, Paul E. Brodwin, Byron J. Good and Arthur Kleinman. Pain as Human Experience: An Anthropological Perspective. Berkeley: University of California Press, 1994. Frank, Arthur. “Reclaiming an Orphan Genre: The First-Person Narrative of Illness” Literature and Medicine 13 (1994):1-21. Gilman, Sander. Disease and Representation: Images of Illness from Madness to AIDS. Ithica: Cornell University Press, 1994. Good, Byron. Medicine, rationality and experience. Cambridge: Cambridge University Press, 2003. Halliday, M.A.K. “On the grammar of pain” Functions of Language 5 (1998):1-32. Irving, Andrew. “Life Made Strange: An Essay on the Re-inhabitation of Bodies and Landscapes.” In Qualities of Time, edited by Wendy James and David Mills. Oxford: Berg, 2005. Needham, Rodney. “Polythetic Classification: Consequences” Man 10 (1975): 349-369.
Convergence
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Quayson, Ato. Calibrations. Minneapolis: University of Minnesota Press, 2003. Ranger, Terrence. “Nationalist Historiography; Patriotic History and the History of the Nation: the Struggle over the Past in Zimbabwe”, Journal of South African Studies 30 (2004): 215-234. Ranger, Terrence., Jocelyn Alexander and JoAm McGregor. Violence and Memory - One Hundred Years in the ‘Dark Forests’ of Matabeleland. Oxford: James Curry, 2000. Staunton, Irene. Mothers of the Revolution. Harare: Baobab Books, 1990. Vera, Yvonne. The Stone Virgins. New York: Farrar, Straus, Giroux, 2003.
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Note on Contributor Zoë Norridge is a PhD student at the School of Oriental and African Studies, University of London. Following undergraduate and postgraduate studies in French and Francophone literature at Cambridge University she spent three years working in health promotion before returning to academia. Zoë continues to work as a freelancer and volunteer in the cancer prevention and HIV fields.
Metaphors of Injury: Women Make Sense of Pelvic Pain Victoria M. Grace and Sara MacBride-Stewart Abstract Generating an understanding of chronic pain in the pelvis is the single most important concern for women experiencing chronic pelvic pain. Notwithstanding the long history of hysteria which attributed the origin of women’s apparently unspecifiable yet numerous ailments, pains, paralyses and fatigues to disturbances in this symbolic site, biomedical knowledge is lauded for having replaced cultural ‘mythologies’ with the explanatory discourse of biological ‘science’. Chronic pelvic pain, however, frequently frustrates the attempts of a biomedical paradigm to provide satisfactory explanations. Given the ‘unexplained’ character of chronic pelvic pain for many women, how do they generate understandings of their pain? What discursive patterns feature in their narratives specifically in relation to making sense of the interior of the pelvis? Why is an ‘understanding’ important and what does this mean? How is gender ‘read’ into meanings of the pelvis-in-pain? This paper presents a qualitative analysis of the narratives of forty New Zealand women of European descent who have or have had chronic pelvic pain that is not associated with menstruation or sexual activity. Many also have pain with periods, and/or pain with penetrative sexual activity. The specific focus for this analysis is on talk about meanings associated with the physicality of the pelvis-in-pain. The binary ontology of the post-Enlightenment West that constitutes the body simultaneously as the object of an empirical (biomedical) science and as the lived experience of a subject, dislocates embodiment, and splits explanation from experience. This paper explores how women make sense of their pain both within and against this subject/object binary; how imaginary (and digital) visualisation of the ‘workings’ of the pelvic interior are crucial for many women as a boundary-marking that possibly confines the pain; and how metaphors of injury create an intelligibility of painful processes that helps to anchor women-in-pain within a meaningful world of others. Keywords: chronic pelvic pain, women, gender, imaginary bodies, psychosomatics
This project on meanings that women generate when talking about their experience of chronic pelvic pain grew out of a concern to understand how the role of meaning in the very experience of pain might be explored through a critical, social, interpretive study of narrative. For
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many women, their chronic pelvic pain remains medically unexplained, untreatable and therefore is often persistent and enduring over long periods of their lives.1 It has become increasing clear in the course of at least the last decade that attempts to understand chronic pain through reliance solely on biomedical forms of ‘explanation’ are inadequate to the task. The strict binary of organic function and socio-cultural meaning, or biology/culture, object/subject, so critical to traditional biomedical science, is argued to provide a conceptually inappropriate basis for generating an understanding of chronic pain processes. A consensus across a remarkable spectrum of disciplines, including medicine, is converging on the view that the phenomenology of chronic pain in human beings cannot be ‘explained’ as an artefact of essentially meaningless physiological, biological functions. Rather, human pain is imbued with meaning and cannot be approached from within a paradigm that splits the objective body from the subjective experience of that body.2 Diagnostic procedures conducted and interpreted within a traditional biomedical epistemology frequently fail to identify pathology that would explain chronic pain. Even when a diagnosis can be made with respect to chronic pain, it does not necessarily mean that there is a pathogen identifiable, or that where there is one that successful removal of the cause, and hence the pain, follows. Gender has a special significance with respect to pain;3 chronic pain is without doubt a ‘women’s health issue.’ Women have more chronic pain than men, and in particular have more chronic pain ‘without organic pathology.’4 Chronic pain in the pelvic area can be severe and debilitating for women whose lives are affected;5 it is also considered one of the most perplexing problems from the point of view of gynaecologists. We are interested in the cultural meanings women generate in their narrations of their experience of pelvic pain. The pelvic area in women is strongly associated with femininity, as the site of sexuality, ovulation, menstruation, conception, contraception, gestation, birth, species reproduction. It is also the site of the last stages of the digestive tract, of urination and defecation. The female pelvis variously symbolises the gendered cultural imaginary of life, jouissance, blood, sacrifice, pain and suffering. This paper explores how women talk about their pelvis-inpain, and interrogates the implications of key metaphors, giving particular consideration to gender. Firstly, we present some reflections on the theoretical and methodological context. 1.
The Somatic Imaginary Turner proposed the notion of the somatic society in 1984, suggesting the current epoch is characterised by a particular formation whereby major political and moral problems are “expressed through the conduit of the body.”6 A recurrent problematic explored consistently within sociology, psychology, semiotics, psychoanalysis and feminist
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theory is how, in this historical moment, we might formulate a theorisation of embodiment: how can we understand socio-cultural dynamics and contingencies of individual histories as embodied in the biology of human beings, and reciprocally our biological being as irreducibly embedded in our social institutions, language, and cultural discourse. Moira Gatens suggests, in the context of a discussion on the meanings of femininity and masculinity, that the meaning and significance of our own bodies for us cannot be separated from the meanings and significance of bodies culturally. She proposes the notion of the ‘imaginary body,’ as the lived body: “Theorists of sexual difference” and arguably of embodiment more generally, “do not take as their object of study the physical body, the anatomical body, the neutral, dead body, but the body as lived, the animate body – the situated body.”7 This phenomenological construct of biology as it is lived invokes the notion of ‘image,’ or ‘imagery,’ as a powerful contributor to the imaginary body. The imaginary body is not a ‘natural body,’8 or equally, the ‘natural body’ is an imaginary body. Psychoanalytic understandings invariably problematise the notion of ‘biology’ as somehow split off from the psycho-social lived and experiencing body.9 Lacanian-derived approaches emphasise the significance of ‘body image,’ the morphology of the imaginary body, to the formation of subjectivity. To interpret the meanings that transpire through women’s narration of their experience of pelvic pain, it is useful to employ this concept of the imaginary body; in other words, to make sense of the narration of the dis-ease of persistent pain in the viscera of the pelvis, we will focus on analysing the discourse on the bodily interior as an imaginary constitution. The onto-epistemology of this ‘biocultural’ approach, might be expressed through the concept of ‘flesh’ as developed by phenomenologist of embodiment, Maurice Merleau-Ponty. As Linda Alcoff explains, Merleau-Ponty “strived to develop a new language of ontological description that could avoid invoking the dualisms of subject and object, body and world, past and present, perception and imagination,”10 where the capacity of the body to see is grounded in the body’s own visibility. Through this theoretical framing, visual perception, the creation of an image, is not grounded in the mastery afforded through assumed objectification, but rather it is grounded in our own objectification as embodied in the world. This brings the discussion back to Gatens who argues that the body image is in a sense doubled; it allows us to imagine and reflect upon ourselves “to be our own other,” to be “objects for and to ourselves.”11 A ‘biocultural’ theoretical approach will thus precisely assume a profound scepticism regarding the dualisms of subject/object, mind/body, culture/biology.12 It seeks to avoid biological and cultural reductionism through a critical ontology that enables an exploration of how symbolic
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cultural meanings, personal histories and biological processes are reciprocally infused. The methodological approach we take in this analysis might broadly be called ‘semiotic.’ As such it distinguishes levels of analysis of language as a signifying system: it enables discursive, narrative and thematic levels of analysis.13 In particular, the work of Sebeok and colleagues in developing the field of biosemiotics is instructive as it establishes biological processes precisely as meaningful and interpretive.14 Hoffmeyer’s view of body-function as regulated through a network of semiotic relations affords a perspective on the way historical contingencies are integral to the development of tissues, organs and systems of the body. Such a view on the biological body is ‘non-dual.’ In this view ‘consciousness,’ so fundamental to understanding bodily pain, is expressed as “a semiotic relation: consciousness is the body’s spatial and narrativised interpretation of its existential Umvelt [environment].”15 2.
Methods We now turn to the question how do women talk about the physicality of their bodies, of the pelvis-in-pain? And what can we learn about the experience of pain through the study of this talk? This analysis is based on open-ended interviews conducted with forty women of European descent in New Zealand during 2002. Participants were women who have, or have had, chronic pelvic pain (pain in the area below the navel, and of longer than six months duration) which includes pain with menstruation, with penetrative sexual activity, and pain that is not associated with either of these. Women were recruited for this study in 2003 from a database of women who participated in a prevalence survey of chronic pelvic pain conducted in New Zealand during 2001. A considerable number of this randomly selected group of women aged between 18 and 50 (560) indicated a willingness to be contacted in the future for qualitative work on chronic conditions. A screening questionnaire was sent out to this group to select only those with some form of chronic pelvic pain. ‘Chronic’ pain was described as pain that had been present (either continually or off and on) for at least six months. We wanted to ensure a spread of ages and a combination of the three areas of pelvic pain. We selected only those whose pain was indicated as ‘moderate’ or ‘severe’ on a verbal rating question (scale of mild/moderate/severe), and/or 4.6 or higher on a 10 cm visual analogue scale. The questionnaire was returned by 151 women, ninety of whom had some form of chronic pelvic pain and forty were selected on the basis of the criteria. The group interviewed therefore comprised forty New Zealand women of European descent aged between 22 and 51. Thirty-three had chronic pelvic pain that was not associated with menstruation or sexual activity, 38 had dysmenorrhoea, 29 had dyspareunia, and 24 had all
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three. Very few women describing themselves as Maori, or Maori and another ethnicity, returned the questionnaire, and none met the criteria for inclusion. Ethics approval was obtained from the relevant regional ethics committees (seven regions in total). The interviews took the form of guided conversations,16 whereby the interviewer began with an open-ended question asking participants to ‘tell me about your pain,’ avoided asking leading questions and prompted further conversation through deliberate employment of the interviewees’ own language. This method enabled a process whereby the interviewee set the topics and foci for her narrative about her pain. This approach aimed to provide the opportunity for a spontaneous and reciprocal exchange between interviewer and interviewee, giving the woman the scope to “recall and reflect on her experience from her own perspective.”17 The interviewer’s probes were designed to elicit deeper reflection on the topics raised by the interviewee. Once this process had run its course, if certain key issues had not been raised and discussed, the interviewer asked more specific questions. These included description of the pain, understandings of the pain, emotions associated with the experience of pain, the effects of pain on their everyday lives, and dealing with, or coping with pain. In most interviews, however, these topics were discussed by the interviewees in the course of the conversational interaction.18 The interviews were tape-recorded and transcribed. To analyse this material we read and re-read the transcripts to identify the main thematic areas related to meanings of pain. Prior to the interviewing we had established an area of potential importance to exploring meanings of pain, and that was the significance of women’s understandings of the physicality of the interior of their bodies. For the analysis presented in this paper, we identified all sections of the interviews where women had referred to their bodies in any way, or made statements about their perceptions and understandings of the bodily processes involved in their pain. We began with a number of questions, and used a semiotic analysis to investigate them, exploring the discursive, narrative and deeper thematic levels of the material. The questions guiding this analysis were: x x x x
What discursive patterns feature in the narratives on the question of making sense of what is happening to, for, by the body to create this pain? Why is an ‘understanding’ important? And what role does this play? How is gender read into meanings of the pelvis-in-pain? How do women make sense of the pain both within and against the subject/object binary (experiential and objective)?
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Metaphors of Injury: The Body with Organs Focussing on the words used to identify the central figurative discursive modalities women used when talking about the somatic phenomenon of the pelvis-in-pain, there is no doubt that the imaginary body is a ‘body with organs’; a body with parts, an anatomical body. There were persistent references to location of pain (there, here, to the side, left side, right side, down low, to the back, front, internal, inside, deep inside); and location was also specified by reference to organs (in the ovaries, right/left ovary, uterus, vagina, cervix, tubes, stomach, tummy, bladder, bowel, kidneys, digestive system) and body parts (leg, hips, back, ribs, muscles).19 This modality of location reflected a continuum from specific to vague; for example, from the right ovary to in the pelvic area; from I have bowel pain to in my lower tummy, or what feels like you presume is your tummy. A recurrent feature of the talk about the pelvis as the site of pain was a temporal dimension;20 time cycles and reproductive events constituted a framework for making sense of change and varying patterns of predictability and unpredictability. Words were used to locate the pain in terms of frequency (for example, usually, often, sometimes, always). Terms used to relate pain to a cyclical event such as menstruation or ovulation, or an event such as pregnancy, childbirth, menopause, intercourse included started, after, before, all the time, during, finished. Extremes of predictability and unpredictability created a sense of different experiences of distress in relation to pain that was relentless and debilitating in its predictability on the one hand, or pain that would be equally debilitating but would come out of the blue on the other hand. The discursive level of the text conveyed a sense of a pelvis in which there is a considerable amount of movement; this is a highly active site where pain is implicated in bodily processes of constant change. Words of activity and movement brought the experience of pain into this scene of internal workings: twisting, grabbing, squeezing, pushed out, build up, released, cramping, radiating, passing. Pain, we argue, was implicated in a discourse of damage as these processes worked away. The almost violent processes described involved friction, forces, hydraulics, and abrasions as movements occurred around and between organs and viscera. This damage would happen when something wasn’t working. Metaphors of externally observable processes of injury – of being bruised, cut, ripped, torn, broken – were evident in the talk about the workings of the interior, creating pain that was deep inside. This was the case for talk about menstruation, ovulation, and hormonal influences working within the body, whereby hormonal influences tended to be recuperated into the same mechanical figuration. It was the case for medical procedures (they burnt the lining off my uterus, tubes tied, he went in looking for polyps, if I have everything ripped out, they’d [ovaries] be gone like a shot, cut out) It was also the case for injurious processes associated with
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gestation and childbirth (everything gets beaten up, gets a bit of a battering, squashed, inflammation everywhere, strain on the body, stretched out of place, stretched through the whole area, cut through the muscles, huge amount of scar tissue, bladder stopped working, tears and splits). The most generic statement of the body imagined as an articulated assemblage was: it just seemed to be after having, after finishing the family… and um which was when I was about 32 then it all fell to bits, my body (22,56:36).21 That is, the process of injury was associated with gendered life events such as menstruation, ovulation and birthing. There was a desire and expectation that the ‘injury’ or pain would cease with the menopause. Pain with penetrative sex was also expressed in terms of mechanical forces, often with already tender parts being pushed, touched, wacked. Women who experienced pain with heterosexual intercourse consistently queried the size of the male partner’s penis as a reason for their pain (but rarely stated this with certainty). The anatomical body with organs – the body as imaginary object – was also frequently an embodied, subjectively experienced body (I can feel my ovaries; can feel the egg being released; feel the little egg going down; I can feel my body, what it does, how it functions; can almost feel the connection between your ovaries and the rest of you; it feels sort of all around the ovary; it just feels you can feel all your body organs being pushed and they’re sore). A kinaesthetic expression of feeling the workings of the body cannot be separated from articulations of the image of the bodily interior for as Gatens writes, the body is also an object for ourselves.22 Women talked about having a mental picture of their bodily workings: I suppose uterine contractions are my mental image- and the blood flows increased, so my little kind of mental construct is that, you know, the uterine’s busy contracting away and that’s causing the blood, whether it accelerates the loss of blood from the wall of the uterus or whatever, um, but you know, so I’ve got this nice little mental image (27,19:50); I sort of imagine like on the diagrams you see, ovary there and an ovary there, it was just like one specific ovary and it was just, at times I said to [partner] I said I could just feel I could reach in there and just rip it out (22,12:36). Accordingly, where the construction of a mental image is not able to be imagined, there is often a desire for an image: if they could explain some of those sort of things to you, with the diagram […] It’d be nice just to say well look, hey this is what, you know point out, say this is where your problem is and this is what happens with one, and you know (2,79:43); I’ve sort of got to know pretty well what’s down there and where it’s coming from (26,7:34); it’d be nice to have a little trap door, have a look (28,69:40); sometimes you wish you had a camera - you could look inside, I do (33,119:29). This visualisation of what is articulated as the workings of the inside of the pelvis or this desire for a visual image of the interior allows
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for a kind of boundary-marking that appears to play a role in confining the pain through constructing a visual basis for knowing the dynamics responsible for it, for example: I’ve had so many scans and […] I can see, I know exactly where the cyst is and you know, where all the other bits and pieces are and what’s going on, mmm, so it sort of helps in a way (26,61:34); I’ll try and search for a, a model until I’ve got one if you like, […] I think by doing that then I can kind of put that little bit to bed and I can move on (27,86:50). This is taken one step further by one interviewee who then imagined interacting with what she would encounter if she had a little trap door as this would just be very nice, or just talk to it and say look, just sort yourself out, settle back down again, so yeah (28,71:40). Seeing, knowing and taking action are linked in this discourse in a way that mirrors a longstanding medical, particularly surgical, approach to identifying the pathological through establishing empirically verifiable evidence of abnormality, and correcting through removing or otherwise modifying (although admittedly not talking to) ‘it’. The empiricist notion that the visual perception of the anatomical interior of the pelvis, having a picture, precedes the mechanical discourse of its obvious functionality, must be critically re-stated within a biocultural frame: having a mechanical idea of the workings of the body and the visualisation of its anatomical components are reciprocally co-produced. This critical view opens onto the question of what role the anatomical discourse, the imaginary body with organs, has for women with chronic pelvic pain within the narrative structure of the interviews. 4.
Narrative Dynamics of Isolation and Connection One of the core oppositions within the narratives of the women interviewed is that of isolation and connection. Pain isolates, narrative connects. Living with bodily pain, particularly when there is no diagnosis (otherwise known as medically unexplained symptoms), is invariably socially isolating. No individual can know the experience of the pain of another. When the pain is ‘silent’ and invisible, and where the sufferer has no medically-legitimated diagnosis, she frequently fears that her pain is not believed, even by those close to her. One woman expressed how it is for her: you just sort of go about your own business dealing with your own inside problems, so, mmm, as the days wear on, nobody else gets to share that, only just you (22,131:36). With pelvic pain that is assumed to have a commonality across many women, for example pain with periods, this is either not talked about with other women, or the connection is made through this anatomical, body with organs discourse and not through a narration of being in pain or suffering: I don’t think that’s something that you really talk about. I mean sometimes you talk about your periods, you know, feeling a bit yuk today or something. Coz my neighbour across the road, I know more about her insides than anybody, […] this other neighbour who’s going to have a
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hysterectomy, ‘well actually I think I might need one of them too,’ rah rah rah, so I think you sort of need a lead in. It’s not something that you bring up, yeah (1,485:45). The repeated and well-known pattern for chronic pain sufferers is one of gradual reduction of their friendship and support networks and increasing isolation which can lead to a drastic change in their lives. Failure to communicate, an inadequacy of expression, a sense of hopelessness resulting from the inability of others to enter into the experience of pain effecttively shuts those suffering pain out of social existence. Being in pain can be an experience of social exile, disconnected from empathy and understanding through the inability to communicate the meaning and sensory reality of pain. As one woman said people can accept that physiccal illness because someone’s got a broken leg but a mental illness, you know, it’s not seen or, and I guess, in some ways I probably liken it to that because I can’t see what’s wrong, it’s inside… (15,73:33). A discourse of the anatomical body is culturally viable. It is a means to establish connectedness with others. Knowing through visualising the imaginary anatomical body and articulating what’s going on through metaphoric reference to injurious processes creates a culturally credible intelligibility. It invokes processes that can be understood to produce pain. For another woman: I know exactly where all the other bits and pieces are and what’s going on, mmm, so it helps in a way, I think it’s worse if you don’t know what’s going on and you almost think like no one will believe you, yeah, which is awful, but now I know exactly what’s going on and yeah, that does help (26,61:34). This imaginary constitution of the anatomical pelvic interior enables connectedness and cultural intelligibility. However, it disallows a construct of the body less as a ‘thing’ and more as a dynamic process of ‘becoming’ that is fundamentally semiotic and interconnected with that which is not confined to the pelvis/body. The expression ‘body with organs’ reflects the inverse of the ‘body without organs’ (BwO) proposed by Deleuze and Guattari – a BwO is resistant to the medicalised territorialisation of bodily desire, rejecting the ‘inert’ object status of a biological body dislocated from a culturally animated desire.23 This imaginary body with organs gives a structuring to the experience of pain – a dialectic of the experience affecting the imagery and the imagery affecting the experience. The experience is constituted within and through this dialectic. If we assume the semiotic body as a point of departure, then the body as a living embodiment of its biocultural history is disallowed and has no ‘voice,’ no social being, no desire. The pathologies of the organism are silent, are inherently meaningless. This invisibility arguably has a particular salience in terms of gender.
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The Pelvis and Femininity The configuration of pelvic processes involved in pain, as these were narrated by the women interviewed, are undeniably markers of being gendered female and are integral to the meaning of the embodied feminine: menstruation, bleeding, ovulation, hormones associated with reproductive processes of conception and gestation, menopause, sexuality, pregnancy, birth. Where urinary and defecatory functions were mentioned it was frequently in association with the effects of menstruation or a kind of internal havoc created by childbirth. How women engaged femininity through this narrative, particularly in terms of the normalisation of pelvic pain, is the subject of another paper. What is important here is to note how gender is read into the imaginary anatomical pelvis-in-pain: being a woman, having these complicated, cyclical bodily processes marked by life-course events, having pain deep inside that is associated with these processes, and that is somehow mysteriously non-conforming to the dominant sociocultural perception of medical discourse, is to have a body that refuses to signify. In a sense the body refuses to be an organism, to be a body with organs that renders a pathology to the objective clinical gaze. There is another, more muted or subdued way in which being a woman with pelvic pain was expressed by those interviewed, one that transpired through the very hesitancy, or at times even flippancy, in articulating the perception of a body with organs. Because it’s in your pelvic region, I mean it takes in a few wee bits and pieces there, and you know, and there’s your tummy and your pelvic area, and the top of your legs and you know, it’s that little area there, well I mean, it’s not your legs and it’s not your tummy, it’s just there, yes, and it’s at the front, it’s not at the back in which case it would be your bottom, sort of thing, you know and it’s not your back, coz it’s not your back it’s at your front […] but that’s the thing, it’s there (1,268:45). We might call this a narrative of a/proximity in the sense of a story-line that draws an oblique attention to the strangeness or incredulity inspired by a discourse of the pelvic organs and viscera that dissociates them from any subjectivity: not proximate, without proximity, and therefore articulated in a way that is approximate: it wasn’t my muscles or anything like that, my tummy muscles, it was actually inside me (2,191:43): it was all around the same place, yeah, I don’t really know too much about where everything is there, yeah (4,34:22); it’s down in that corner somewhere (8,35:51); it wasn’t clear exactly where it was coming from, it was just sort of general, everywhere (21,11:35); it was totally isolated to that one ovary, well, would that, would that be an ovary, would it? (22,12:36). It is also a narrative about a complex set of experiences, a nexus of experience, for which there is a socially constructed requirement for an embodied place and for which there is no-place; an absence of location
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within a discourse entirely anchored in a primacy of location within the body. This absence reflects a cultural absence; a place that is unnameable, unrepresentable. Although talk about pelvic pain that invokes the anatomical body as an organism arguably establishes a means of connection with others, and therefore a social legitimacy and presence, this a/proximate discourse simultaneously undermines its credibility. To understand this apparently oppositional process, we suggest that Baudrillard’s concept of challenge24 is more useful that a Deleuzian reading. A Deleuzian interpretation of the BwO as one that pursues ‘lines of flight’ from territorialized bodily discourse25 is not so compelling in this context because of the predominant strength within the pain narratives of the body with organs, and of the body looking for organs. From a Baudrillardian perspective, the woman with pelvic pain who confronts the dominant discourse (both of medicine and the more general social imaginary with a demand that their pain be understood within the legitimated paradigm of objectivity presents a challenge that, pushed to the limit, compels an inevitable reversion of the terms of this paradigm through its very impossibility.26 It is as if the woman is saying: “OK you want me to be a body with organs; then I will be that and demand that you explain my pain in these terms.” 6.
Concluding Reflections Women narrate the physicality of their bodies, the pelvis-in-pain, in anatomical terms, as bodies with functional or dysfunctional organs, a finding also reported by Savidge, Slade, Stewart and Li.27 Cyclical processes delineate the temporality of pelvic pain, and relate to sexed features of the body: reproductive processes, especially menstruation, ovulation, and birth. Women describe their understanding of these workings in terms of what might be called injurious processes. The desire for a visual image of the workings of the pelvic interior seems to play a role in bounding an otherwise unbounded experience, but equally, along with the metaphors of injury, such depictions create a means to connect with others about their pain through socially meaningful discourse. This construct of pain resulting from some unknown source of dysfunction, or injury-forming, organic mechanisms, however, silences or obscures the body as a site manifesting biocultural histories. The body with organs is a body captured by the requirement for an objective construct of bodies, rendering the body potentially ‘abject’ in Kristeva’s sense,28 if it fails to signify. The ‘abject’ marks the not-yet subject who falters at the boundary of the symbolic order, being-at-a-loss when confronting the demand for signification: “at any juncture … the abject can emerge to mark as untenable the identity of the subject in its objective worth.”29 This failure to produce the requisite signification is in tension with the desire for connectedness with others through the mutuality of a dynamic process of meaning-making by way of social
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encounter. The gendering of this process is doubly underscored by Kristeva’s analysis of the association of the abject with the feminine, or female, body. To the extent that the no-place of the pelvis is an imaginary site of a being-in-pain that remains socially unknown, unknowable and that disconnects and isolates the woman-in-pain, it constitutes a particularly strong and challenging manifestation of the feminine abject. The anatomical body with organs, is one territorialized by what in some ways might be an outdated medical discourse (this is not a neurological, biochemical body of electrical circuits, feedback, and signalling). The dualist framing of any objective body of biology fundamentally disallows the possibility of meaningful semiotic, ontogenetic, biological processes that are integrally social, in which histories of experience, meaning and interpretation are sedimented in the organic integrity of the organism. Without wanting to anticipate the direction for a non-dualist approach to chronic pelvic pain, Elizabeth Wilson’s work is suggestive. In a recent book, Wilson effectively engages the question of the body that will not signify, the psychosomatic body.30 Gender is central to her analysis. Like Lynda Birke,31 Wilson is concerned to bring the biological more fully into cultural inquiry on the body and somatic experience. But going further than Birke, Wilson takes up the question of precisely how do the contingencies of varied social experience become viscerally embodied: “How can a mother’s death become a change in serotonergic pathways?”32 Acknowledging the central role of psychoanalysis in refusing a disembodied subjectivity, in establishing the grounds for a non-dualist psycho-socially inflected diagnostic of somatic symptoms or distress, Wilson is clear, however, that Freud did not pursue in any rigorous or conclusive manner the question of ‘how’ somatisation occurs? Where Wilson develops Freud’s illustration of “a consanguinity of nerves, psyche, and gut that even the most sophisticated of contemporary knowledges are still struggling to grasp”,33 possibly a focus on the coimplication of nerves, psyche and the pelvic viscera is a means to foster an imaginary body whereby pain can be ‘understood.’ It is possibly through such a means for the meaning of pain to enter social discourse, that the Baudrillardian challenge women-in-pain present can be taken up.
Notes 1 Victoria M. Grace, “Problems women patients experience in the medical encounter for chronic pelvic pain.” Health Care for Women International 6 (1995): 509-519; M. Pitts, L. McGowan and D. Clark Carter, “Chronic pelvic pain.” In Women’s Health: Contemporary
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International Perspectives, edited by J.M. Ussher (London: The British Psychological Society, 2000). 2 Daniel B. Carr, John D. Loeser and David B. Morris, Narrative, Pain and Suffering. Progress in Pain Research and Management (Seattle: IASP Press, 2005); Victoria M. Grace, “Embodiment and meaning: understanding chronic pelvic pain.” Journal of Consciousness Studies 10, 11 (2003): 41-60; Gillian Bendelow and Simon Williams, “Transcending the dualisms: towards a sociology of pain.” Sociology of Health and Illness 17 (1994): 139-165. 3 Gillian Bendelow, Pain and Gender (London: Prentice-Hall, 2000). 4 Epidemiological data indicate that women are more susceptible than men to chronic pain syndromes (Aloisi, 2000), a higher number of chronic pain conditions (approximately twice) have a higher female prevalence than those with a higher male prevalence (Berkley, 1997), women more often report multiple pain sites than men, more frequent pain, more intense pain (Unruh, 1996), painful autoimmune diseases such as rheumatoid arthritis, and multiple sclerosis are up to nine times more common in women (Fox, 1995), women are more subject to visceral pains (Giamberardino, 2000), which refers to painful conditions arising from the internal organs especially in the abdomen such as kidneys, bowel, bladder, stomach, gall-bladder, uterus, and includes pelvic pain. 5 Pitts, et al., 2000; Grace, 1995; Victoria M. Grace and Krina T. Zondervan. “Chronic pelvic pain: prevalence, pain severity, diagnoses and use of the health services in New Zealand” Australian and New Zealand Journal of Public Health 28, 4, (2004): 369-375; Victoria M. Grace and Krina T. Zondervan. “Chronic pelvic pain in women in New Zealand: comparative well-being, co-morbidity, and impact on work and other activities.” Health Care for Women International (forthcoming). 6 Bryan S. Turner. The Body and Society. Explorations in Social Theory, second edition (London: Sage Publications, 1996), 6. 7 Moira Gatens. Imaginary Bodies. Ethics, Power and Corporeality. (London: Routledge, 1996), 11. 8 Ibid, 82. 9 Elizabeth A. Wilson. Psychosomatic. Feminism and the Neurological Body (Durham: Duke University Press, 2004). 10 Linda M. Alcoff. “Merleau-Ponty and feminist theory on experience.” In Chiasms. Merleau-Ponty’s Notion of Flesh, edited by F. Evans and L. Lawlor, 251-271 (New York: State University of New York Press, 2000), 263. 11 Gatens, 35. 12 A.L. Hinton. “Introduction: developing a biocultural approach to the emotions.” In Biocultural Approaches to the Emotions, edited by A.L. Hinton, 1-37 (Cambridge, UK: Cambridge University Press, 1999).
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13 Bronwen Martin and Felizitas Ringham. Dictionary of Semiotics (London: Cassell, 2000). 14 See for example Thomas A. Sebeok and Jean Umiker-Sebeokm eds., Biosemiotics. The Semiotic Web 1991 (Berlin: Mouton de Gruyter, 1992). 15 Jesper Hoffmeyer. “Some semiotic aspects of the psycho-physical relation: the endo-exosemiotic boundary”. In Biosemiotics. The Semiotic Web 1991, edited by Thomas A. Sebeok and Jean Umiker-Sebeok, 101123 (Berlin: Mouton de Gruyter, 1992), 114. This approach to semiotic analysis also has strong points of consistency with the work of linguist George Lakoff and philosopher Mark Johnson (1999) who provide an empirical basis for the phenomenological argument that the very process of concept formation is embodied (see also Violi, 2001). 16 N. Fielding. “Qualitative interviewing.” In Researching Social Life, edited by N. Gilbert (London: Routledge, 1993). 17 Louise Levesque-Lopman. “Listen, and you will hear: reflections on interviewing from a feminist phenomenological perspective.” In Feminist Phenomenology, edited by L. Fisher and L. Embree, 103-132 (The Netherlands: Kluwer Academic Publishers, 2000), 113. 18 See ibid for further description of this method of interviewing. 19 Italicised words are those used consistently by women, taken from the text as a whole. 20 A set of conceptually linked words such as those related to time here, is referred to as an isotopy in the Greimasian-derived semiotic methodology followed in this analysis (see Martin and Ringham, 2000). 21 This reference includes interview number, followed by paragraph number, then age of interviewee. 22 Gatens, 1996. 23 Gilles Deleuze and Guattari, Felix. A Thousand Plateaus. Capitalism and Schizophrenia (London: The Althlone Press, 1988 c.1980). 24 Jean Baudrillard. Seduction. Translated by J. Benedict (London: Macmillan, 1990 c.1979); Victoria Grace. Baudrillard’s Challenge. A Feminist Reading (London: Routledge, 2000). 25 N.J. Fox. Beyond Health. Postmodernism and Embodiment (London: Free Association Books, 1999). 26 See Victoria Grace. “Reading the silent body: women, doctors and pelvic pain.” In Bodily Boundaries, Sexualised Genders and Medical Discourses, edited by Marion de Ras and Victoria Grace, 85-98 (Dunmore Press: Palmerston North, 1997). 27 C.J. Savidge, P. Slade, P. Stewart and T.C. Li. “Women’s perspectives on their experiences of chronic pelvic pain and medical care.” Journal of Health Psychology 3, 1 (1998): 103-116. 28 Julia Kristeva. Powers of Horror: An Essay on Abjection. Translated by L.S. Roudiez (New York: Columbia University Press, 1982); Martha J.
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Reineke. Sacrificed Lives. Kristeva on Women and Violence (Bloomington, US: Indiana University Press, 2000). 29 Ibid, 22. 30 Wilson, 2004. 31 Linda Birke. Feminism and the Biological Body (New Brunswick, NJ: Rutgers University Press, 2000). 32 Wilson, 2004, 15. 33 Ibid, 43.
Bibliography Alcoff, Linda M. “Merleau-Ponty and feminist theory on experience.” In Chiasms. Merleau-Ponty’s Notion of Flesh, edited by F. Evans and L. Lawlor, 251-271. New York: State University of New York Press, 2000. Aloisi, Anna M. “Sensory effects of gonadal hormones.” In Sex, Gender and Pain, edited by R.B. Fillingim. 7-24, Seattle: IASP Press, 2000. Baudrillard, Jean. Seduction. Translated by J. Benedict. London: Macmillan, 1990 c.1979. Bendelow, Gillian and Simon Williams. “Transcending the dualisms: towards a sociology of pain.” Sociology of Health and Illness 17 (1994): 139-165. Bendelow, Gillian. Pain and Gender. London: Prentice-Hall, 2000. Berkley, Karen J. “Sex differences in pain.” Behavioral and Brain Sciences 20 (1997): 371-380. Birke, Linda. Feminism and the Biological Body. New Brunswick, NJ: Rutgers University Press, 2000. Carr, Daniel B., John D. Loeser and David B. Morris. Narrative, Pain and Suffering. Progress in Pain Research and Management. Seattle: IASP Press, 2005. Deleuze, Gilles and Guattari, Felix. A Thousand Plateaus. Capitalism and Schizophrenia. London: The Althlone Press, 1988 c.1980. Fielding, N. “Qualitative interviewing.” In Researching Social Life, edited by N. Gilbert. London: Routledge, 1993.
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Fox, H.S. “Sex steriods and the immune system.” In Non-reproductive Actions of Sex Steriods, edited by G.R. Bock and J.A. Goode. Chichester: John Wiley, 1995. Fox, N.J. Beyond Health. Postmodernism and Embodiment. London: Free Association Books, 1999. Gatens, Moira. Imaginary Bodies. Ethics, Power and Corporeality. London: Routledge, 1996. Giamberardino, M.A. “Sex-related and hormonal modulation of visceral pain.” In Sex, Gender and Pain, edited by R,B. Fillingim, 135-163. Seattle: IASP Press, 2000. Grace Victoria M. “Problems women patients experience in the medical encounter for chronic pelvic pain.” Health Care for Women International 6 (1995): 509-519. Grace, Victoria. “Reading the silent body: women, doctors and pelvic pain.” In Bodily Boundaries, Sexualised Genders and Medical Discourses, edited by Marion de Ras and Victoria Grace, 85-98. Dunmore Press: Palmerston North, 1997. Grace, Victoria. Baudrillard’s Challenge. A Feminist Reading. London: Routledge, 2000. Grace, Victoria M. “Embodiment and meaning: understanding chronic pelvic pain.” Journal of Consciousness Studies 10, 11 (2003): 41-60. Grace, Victoria M. and Krina T. Zondervan. “Chronic pelvic pain: prevalence, pain severity, diagnoses and use of the health services in New Zealand” Australian and New Zealand Journal of Public Health 28, 4, (2004): 369-375. Grace, Victoria M. and Krina T. Zondervan. “Chronic pelvic pain in women in New Zealand: comparative well-being, co-morbidity, and impact on work and other activities.” Health Care for Women International (forthcoming). Hinton, A.L. “Introduction: developing a biocultural approach to the emotions.” In Biocultural Approaches to the Emotions, edited by A.L. Hinton, 1-37. Cambridge, UK: Cambridge University Press, 1999.
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Hoffmeyer, Jesper. “Some semiotic aspects of the psycho-physical relation: the endo-exosemiotic boundary”. In Biosemiotics. The Semiotic Web 1991, edited by Thomas A. Sebeok and Jean Umiker-Sebeok, 101123. Berlin: Mouton de Gruyter, 1992. Kristeva, Julia. Powers of Horror: An Essay on Abjection. Translated by L.S. Roudiez. New York: Columbia University Press, 1982. Lakoff, George and Mark Johnson. Philosophy in the Flesh. The Embodied Mind and its Challenge to Western Thought. New York: Basic Books, 1999. Levesque-Lopman, Louise. “Listen, and you will hear: reflections on interviewing from a feminist phenomenological perspective.” In Feminist Phenomenology, edited by L. Fisher and L. Embree, 103-132. The Netherlands: Kluwer Academic Publishers, 2000. Martin, Bronwen and Felizitas Ringham. Dictionary of Semiotics. London: Cassell, 2000. Pitts, M., L McGowan and D. Clark Carter. “Chronic pelvic pain.” In Women’s Health: Contemporary International Perspectives, edited by J.M. Ussher. London: The British Psychological Society, 2000. Reineke, Martha J. Sacrificed Lives. Kristeva on Women and Violence. Bloomington, US: Indiana University Press, 2000. Savidge, C.J., P. Slade, P. Stewart and T.C. Li. “Women’s perspectives on their experiences of chronic pelvic pain and medical care.” Journal of Health Psychology 3, 1 (1998): 103-116. Sebeok, Thomas A. and Jean Umiker-Sebeok. (Editors) Biosemiotics. The Semiotic Web 1991. Berlin: Mouton de Gruyter, 1992. Turner, Bryan S. The Body and Society. Explorations in Social Theory (second edition). London: Sage Publications, 1996. Violi, Patrizia. Meaning and Experience. Translated by J. Carden. Bloomington: Indiana University Press, 2001 c.1997. Wilson, Elizabeth A. Psychosomatic. Feminism and the Neurological Body. Durham: Duke University Press, 2004.
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Note on Contributors Victoria Grace, School of Sociology and Anthropology, University of Canterbury, New Zealand (
[email protected]) and Sara MacBride-Stewart, School of Social Sciences, Cardiff University, Wales (
[email protected]). Both have a research interest in gender, subjectivity, embodiment and health. Victoria Grace also has an interest in psychosomatics, ‘lay’ meanings of genetics, and the (bio)medicalisation of sexuality. Sara MacBride-Stewart also has an interest in queer and lesbian health, perspectives on biomedicalisation, and feminisation, work and medicine.
Barriers to Talking About Chronic Pain: Insiders’ Views on Illness, Self and Responsibility Stella Howden Abstract Chronic or long-lasting pain is associated with interfering with multiple domains of an individual’s life e.g. relationships, emotional and physical health. The experience of pain is also linked to feelings of isolation and difficulties in communicating the pain experience to others. In this chapter, I aim to put forth the argument that there are multiple, complex barriers which act to deter the individual, who lives with chronic pain, from sharing their pain experiences with others e.g. family and healthcare professionals. This argument is based upon the findings from a qualitative research study which explored the pain meanings of 29 individuals who were living with the chronically painful syndrome: rheumatoid arthritis (RA). The findings from the study suggest participants’ perspectives of ‘self’, their perception of the illness and their views on responsibility for illness management, may all act as barriers to talking about their pain experiences and associated concerns/problems. It is proposed that these findings have implications for those living with chronic pain and those involved in caring for people with chronic pain. Keywords: chronic pain, communication, rheumatoid arthritis, barriers, qualitative. 1.
Introduction The experience of pain always forces the individual to find meaning in it;1 however, these meanings are complex and changeable. Although there are a limited number of ways of making sense of any phenomenon within society,2 meanings of pain are a product of multiple influences; culture, society and bodily experiences, each of which are also influenced by time, context and situation.3 In this way, some ‘ways of knowing’ about pain and talking about pain are likely to be shared whilst others may be unique to the individual. Significant advances have been made in understanding the mechanisms of pain generation and analgesia over the past forty years.4 Accordingly, there has been a movement away from the conception that pain is simply a direct consequence of tissue damage, towards models which advance the idea that multiple dimensions and diverse inputs shape the pain experience, emphasising the critical role of the individuals’ perception of pain and its consequences in shaping the pain experience. 5 In tandem with this appreciation of the significance of pain mean-
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ings, there has been a growing interest in placing the subjective experience of the individual at the centre of inquiry (i.e. exploring the ‘insiders’ perspectives on living with chronic pain).6 Within this expanding body of knowledge there are recurrent themes related to the difficulties associated with communicating pain experiences to others. Studies describe the sense of isolation that individuals with pain can experience as they are increasingly made conscious of the private nature of their suffering as others around seem oblivious to their affliction.7 In the context of ‘patientdoctor’ consultations involving discussions about pain, patients report feeling frustrated and become distrusting of the doctor when the patient perceives that the health professional has not validated or legitimised their pain as being ‘real’ i.e. the doctor does not affirm that they accept the pain as the patient has described/explained it.8 Such studies have supported the notion that the personal and subjective experience of pain is one that can be problematic to share, as Elaine Scarry wrote in her seminal text on pain: “pain comes unsharably into our midst as at once that which cannot be denied and that which cannot be confirmed.”9 Although these qualitative ‘insider’ studies have advanced what is known about the nature of the difficulties of talking about pain these have tended to focus upon individuals who have pain that has been medically categorised as being of undefined origin (e.g. non-specific low back pain), in other words those who may be perceived to be problematic or medically challenging cases.10 Few studies have attended to the adversities which may face individuals who have been given a medically uncontested, distinct diagnosis, which come laden with the connotations associated with living with a progressive, chronically painful condition. One notable exception to this research bias is a qualitative study which sought to explore the perspectives of older people with degenerative joint disease (osteoarthritis).11 The findings suggested that participants expected their pain to worsen with time and thus accepted and tolerated pain as a normal part of ageing. It was further hypothesised that this may have influenced these individuals in their decision not to seek medical help, which would arguably have been a successful route to alleviating their pain and associated problems.12 From this, it can be suggested that having a particular type of diagnosis, and its associated illness conceptions, may act as a barrier to reporting pain. Moving my examination of the literature into the area of cancer care further strengthened the claim that there was likely to be an important relationship between the nature of the barriers to ‘pain-talk’ and the type of condition/disease that the pain was associated with. Several studies suggested that patient’ beliefs that some degree of pain should be tolerated and that pain was inevitable in cancer may have promoted the nonreporting of pain to healthcare professionals.13 These studies prompted an exploration of pain meanings associated with rheumatoid arthritis (RA). Rheumatoid arthritis is the most
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common form of inflammatory joint disease, affecting around 387,000 people in the UK.14 This systemic condition remains incurable, with pain being a key characteristic, affecting multiple small joints of the body with variable intensity.15 Increasing pain in RA is associated with decreasing quality of life16 and it is rated as a priority for treatment by those who live with it.17 To date, studies in this area appear to have failed to engage in an in-depth exploration of insiders’ views on talking or not talking about pain. 2. Exploring Pain Meanings A. Study Participants Between the years 2000-2005, a study was undertaken to explore the different perspectives of consultant rheumatologists (specialists in the field of care in RA) and individuals with rheumatoid arthritis with respect to pain.18 It was from this larger study that the themes relating to barriers to talking about pain emerged. Twenty nine adults with RA took part in the study and all were recruited from central regions of Scotland. Sampling was purposive, aiming to generate a group with a diversity of pain experiences and pain stories. Sixteen females and thirteen males volunteered and there were representatives for each decade of life from people in their thirties to those in their eighties. The majority of patients were retired (62%), eight were employed and three were unemployed. The number of years since diagnosis ranged from one to thirty-seven years and educational background varied from nine to eighteen years of schooling. Ethical approval for the study was obtained from the relevant ethics committees. Signed, informed consent was obtained from all participants prior to interview. B. Generating Findings and Analysis Semi-structured, qualitative interviews were used to generate talk about pain related subjects, such as what was their experience of pain and to whom did they talk about their pain experiences? All interviews were audio-recorded, with consent, and were, on average, 1½ hours in duration. These recordings were then transcribed verbatim. The approach to analysis of the transcripts was, broadly, interpretive and qualitative. Interpretive themes were generated based upon findings grounded in the respondents’ words. The transcripts were read and re-read, looking for similarities and differences across the group as well as non-cross-sectional readings (i.e. using a constant comparative method).19 In the early stages of generating findings, participants were involved in confirming/rejecting manifest level interpretations20 and, in later stages, peer analysis/discussion was conducted over several sessions to scrutinise and help clarify the interpretive workings. From the iterative and interactive analytical process of moving between account generation,
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reduction of the findings and forming explanations,21 key themes were developed. These themes represent a conceptualisation of underlying patterns in the pain accounts.22 3.
An Overview of Pain Meanings in Rheumatoid Arthritis As is commonly found in explorations of insiders’ views of pain, multiple complex meanings emerged, these being shaped by individuals’ experiences, covering multiple explanations reflecting cultural and social understanding23 as well as others shaped by particular circumstances, time and context.24 Pain was represented in accounts as a physical sensation and also as something emotional and psychological, an experience that could be private or shared but always having consequences for the individual’s body, sense of self and relationships with others. Most notably, the findings from the study highlighted the diversity of factors which appeared to act as barriers to reporting pain or sharing pain experiences with others e.g. family, doctors, carers. Overall, participants highlighted that there were few opportunities for them to talk openly, or in non-guarded way, about their experiences and suffering from pain. During the interviews many interviewees said that they had enjoyed having the opportunity to talk freely and at length about their pain related experiences, concerns and expectations for a future life with pain. It was suggested, that for several reasons, pain-talk was unacceptable and was to be avoided if possible. One participant apologised for his pain account (despite the fact that this was what I had told him I was interested in): “You’ve got an hour today, so you are getting lumbered with it” [David, aged 76 years, diagnosed 15 years]. Taken together, the two primary findings – that pain is generally detrimental and threatens ‘self’, along with the finding that individuals’ accounts were strewn with references to barriers to reporting their pain experience – present as a paradox of pain meanings. When an individual is suffering with pain, then what influences them to stay silent, when this behaviour may preclude their receipt of timely support and advice? Exploring each participant’s narrative revealed an inter-weaving of accounts about the negative impact of pain along with those relating to acceptance and expectation of pain in RA. In addition, other accounts suggested that complaining about pain was counter to the image of ‘self’ which the respondent wanted to uphold. With reference to ‘pain-talk’ in the clinical context, the study findings suggested that disease management was perceived to be the rightful responsibility for the doctor, but this did not extend to include the management of on-going pain and the consequences of this. 4.
Theme 1: accepting RA as a painful illness entity Unlike patients with medically undefined chronic pain, who continue to search for an acceptable and credible explanation for pain,25
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the individual with RA appeared to stop seeking further medical explanations for pain after diagnosis. Attribution of pain to an incurable disease (RA), which is also associated with incomplete medical control and understanding, was key in shaping expectations of daily pain; pain which could progressively worsen with the advance of disease and ageing (similar to lay conceptions of OA).26 Accordingly, unlike the persistent demand for medical attention to relieve suffering, as occurs in undefined pain,27 those with RA seemed to be resigned to experiencing daily pain, in some degree, this potentially acting as a barrier to seeking help.28 Interviewer: Did getting the diagnosis of RA change what you thought about the pain? Harry: Yes, quite a bit, because I had always thought with rest, when I get sore, I would use wrist supports and it would gradually go away. But then I had the realisation that it wasn’t going to go away. [Harry, aged 63, diagnosed 20 yrs] James: well, you learn from other people and you watch what they are doing and saying you know. And you say, well that’s it, so lets put up with it sort of style. Because there is no other ways, they are not going to cure it. They [doctors] don’t know what causes it so they can’t sort it out; it’s just as simple as that. I just accept that. [James, aged 70, diagnosed 19 yrs] Accepting that pain will be a feature of life, something that has to be lived with and integrated into life can be seen as a valuable, adaptive way to cope.29 Acceptance, within the chronic pain literature, has been described as being associated with a positive way of engaging in life where, rather than attempting to control or avoid pain, circumstances of pain are accepted as they are, energies then being focused on more fulfilling pursuits.30 Notably, this is only considered a positive adjustment where the best attempts at control of pain and adaptation have been tried and it should be noted that the ‘acceptance’ definition is qualified by the caveat “does not include resigning oneself to all experiences of suffering.”31 In contrast, it is argued that, from the accounts of the participants’ experiences of pain management (both independent and medically guided endeavours), the best efforts at controlling and supporting those with pain were not realised, and therefore, it is argued that resignation to expectance and acceptance of suffering was not the most adaptive, cognitive orientation for these individuals.
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5.
Theme 2: resisting the image of: ‘self’ as a pain-talker ‘Self’ is a socially constructed concept; the individual’s organised attributes that are established through time.32 Throughout participants’ accounts the undesirability of pain-talk or pain related complaint was highlighted, suggesting that if they were to freely or openly talk about their actual pain experiences, they would be seen by others in a negative light and viewed in a manner that did not match their valued image of ‘self.’ Participants’ accounts suggested that an individual who complained or ‘moaned’ about pain was risking being labelled as a complainer. Participants referred to observation of peers’ ‘pain-talk’ behaviour as portraying a negative image of people with RA, by identifying themselves as being a ‘sick’ person, which most of the study participants did not consider themselves to be. The label of complainer or ‘moaner’ was to be avoided at all costs, as it was not aligned with their own conception of how they wanted to been seen by others. Participants therefore chose, at times, to conceal their pain from friends, family and work colleagues when they were asked about their pain and how they were feeling. Clare: well, I don’t want to have it [RA]. It’s just like, ‘I don’t want this thing..’ You know, I’ll never let on to John [participant’s husband] that I’m sore. I mean, he will ask me and I’ll just say, ‘I’m fine, I’m fine’. It’s my way and so I just try and control it as much as I can without anyone else knowing. [Clare, aged 32, diagnosed 4 yrs] Peter explains how he tries to conceal his pain from his adult daughters who live at home: Peter: Well, sometimes they [daughters] will ask, ‘are you alright?’ ‘Yes, I’m OK, yes’, because you don’t want to be walking about the house moaning about it all the time do you? Well, that’s the way I feel. They are [then] wanting to look after you, but you don’t want them to have it in their eyes twentyfour-seven, sort of thing. [Peter, aged 57, diagnosed 3 yrs] Participants also appeared to give careful consideration to how they may be perceived by their doctor if they were to fully report their pain at each consultation. David explained that he pre-planned what and how he would tell the doctor about his on-going problems: Interviewer: so you pre-plan what you will say to the doctor? David: it has to be premeditated; you have to
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be ready to tell him about this and this and this. I am probably too fussy now and then and I could see him [the doctor] regarding me as a pain in the neck. Interviewer: do you think so? David: well I try not to be, I’m careful as I am in and out a lot these days.. [David, aged 76, diagnosed 15yrs] 6.
Theme 3: accepting self-responsibility to manage pain This theme was derived from respondents’ accounts of the varied and separate roles and responsibilities adopted by themselves and doctors in dealing with pain and its consequences. In essence, the doctor-role was identified as being the primary assessor of the ‘disease-affected body,’ their prime responsibility to manage the disease through use of drugs and so to slow disease activity and progression. This theme was built upon the distinction that participants drew between those aspects of their condition which were of relevance to the medical expert (e.g. blood test results) and those which were deemed not relevant (e.g. the emotional impact of pain). Participants clearly identified and described doctors’ roles as being disease specific, assessing the body of the patient for signs of the disease and then issuing and monitoring medication used to control the disease. The pain experience was a secondary issue in terms of assessment and treatment, in spite of participants’ assertions that pain was understood as a symptom of disease! Embedded within this apparent contradiction was the assumption that the doctor would be consistently working to optimally suppress the disease (using various medications) and that any residual symptoms were there to be endured – all this, despite current knowledge that disease activity in RA can only account moderately for pain reports, with instances where psychological and social factors can be more closely related to pain than disease measures.33 The expectation of pain, along with the ambiguity of pain, as being something which was ‘real’ but also an experience that could be augmented by the psyche or other ‘non-disease’ factors (e.g. daily activity levels), appeared to further reinforce respondents’ opinions that pain may not be of significant clinical relevance. Fluctuating, day-to-day pain experiences and their consequences were seen by respondents to be their own responsibility, to be managed, as best they could by adapting practically and mentally to any given situation. Participants suggested that their pain reports to the doctor were fashioned to present, in their view, what was a credible, disease-related report that was thought to be most useful for the doctor (this was also curtailed to fit within the limited time available for the consultation). In this way, the respondents focussed their clinical pain-talk to giving sensory-discriminatory pain details (e.g. location of pain, type of pain)
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whilst omitting other facets e.g. the emotional or psychological consequences of pain. David: I don’t think that anyone wants to hear this kind of story [referring to him telling his story of pain to the interviewer] for this length of time! They [doctors] don’t need to if they are focussed. Interviewer: What do you think the doctor’s focus is then? David: Finding out what is going on! It’s what they do, there are tests that they can work to do it. Interviewer: Like blood tests? David: Oh yes; but also question tests, like, ‘what does it feel like?’ ‘Is it a hot pain or a sharp pain’, or this kind of stuff, they ask me this. But I think a lot of mine you can actually see it, when they look at it and get a little bit of history and they know where they are. [David, aged 76, diagnosed, 15yrs] Respondents consistently constructed an account which suggested that they defined the doctor’s responsibility for the management of their pain in a relatively narrow and biomedical way. The doctors’ primary responsibility was to deal with the disease, using medical means, as best they could, leaving any residual problems, such as on-going pain and the associated disruptive impact of pain, as something the individual would have to accept and deal with independently. Ultimately, this may result in the doctor not being told of the individual’s primary concerns, as the individual has already decided what was and was not relevant for the doctor to hear. In essence, in RA, it appears that the doctor’s role is defined as dealing with disease, while the patient’s role is to deal with illness. Accepting responsibility for self-management of chronic illness is reported in osteoarthritis and other illnesses e.g. multiple sclerosis, and it has been suggested that this may relate to idealised models of social and moral correctness – accepting responsibility for returning to as ‘normal’ a life as possible when faced with a chronic illness.34 However, the ‘moral’ element of accepting personal responsibility did not appear as dominant in this study, as were sub-themes relating to what was and was not regarded as the doctor’s role. The medical ownership of disease by the doctor is the basis of authority in medicine35 and is culturally embedded within society and this is reflected in the findings from the study. A lack of any expectation that the doctor should (or could) do something about non-disease pain-related issues was clear. A few respondents identified either their family doctor or a specialist rheumatology nurse as more appropriate recipients of emotional, practical or psychological concerns, a finding noted in other studies.36
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Perhaps of most concern were the majority of respondents who appeared to assume sole responsibility for ‘non-disease’ concerns and, as discussed before, did not appear to share their pain experiences with friends or family. This raises the question, to whom do people with RA talk to about their pain? Being able to talk about pain is advocated as providing a number of benefits, for example, giving the individual an opportunity to make sense of his/her experience, to gain peer support and to enable a more positive appraisal of their problems.37 7.
Implications of the Study Findings Explorations of ‘insiders’ views on pain have concentrated upon the experiences of those who may be considered to have contested or nondefined pain syndromes. Although this work is of value in advancing understanding of the difficulties faced by these individuals it may have over-shadowed the silent suffering of those who are living with chronic pain associated with non-malignant, chronically painful conditions, including RA. Being given a diagnosis of RA may, in itself, act as a significant barrier to reporting pain to friends, family and doctors, the very individuals who may be able to support and care for that person. Salmon and Hall proposed that the concept of ‘disease’ provides a common enemy, enabling both doctor and patient to escape responsibility for suffering, together fighting against a ‘malign entity’.38 In their accounts, the respondents appear to bear the bulk of the burden of pain management, having little expectation of wider support from medical or other sources. Adding to this the desire to retain an image of ‘self’ as a non-complaining, non-pained individual, may all act to further isolate the person with pain. It is arguable that without the healthcare professional actively encouraging, inviting and validating the individual’s personal pain account it is likely that many of their pain concerns may not find a voice. In accepting the burden of daily pain and, with limited expectations of the scope of available healthcare, the individual with RA may be indifferent about seeking advice or support. These study findings suggest that there is a need for greater support to be provided to those living with RA in terms of understanding their own role, and that of the doctors, in managing pain and its many consequences. Individuals and their families may benefit from greater understanding of the far reaching consequences of chronic pain and the lack of association that pain can have with disease variables – pain often being shaped by emotions, thoughts, feelings and social factors. Without this understanding and knowledge of the potential benefits of talking about pain or who they can talk to and what help is available (which can extend far greater than the realms of pharmacology), then these individuals may continue to endure their pain in silence.
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Notes 1 Sarah Aldrich and Christopher Eccleston, “Making sense of everyday pain,” Social Science and Medicine 50 (2000): 1631-1641. 2 Paul Stenner and Christopher Eccleston, “On the textuality of being towards an invigorated social constructionism,” Theory and Psychology 4 (1994): 85-103. 3 Eric Cassell, “The nature of suffering and the goals of medicine,” New England Journal of Medicine 306 (1982): 639-645. 4 Clifford Woolf and Isabelle Decosterd, “Implications of recent advances in the understanding of pain pathophysiology for the assessment of pain in patients,” Pain (supplement 6) (1999): S141-S147. 5 Ronald Melzack, “From the gate to the neuromatrix,” Pain (supplement 6) (1999): S121-S126. 6 Peter Conrad, “The experience of illness: recent and new directions,” Research in the Sociology of Health Care 6 (1987): 1-31. 7 Richard Hilbert, “The acultural dimensions of chronic pain – flawed reality construction and the problem of meaning,” Social Problems 31 (1984): 365-378; Marja-Lissa Honkasalo, “Chronic pain as a posture towards the world,” Scandinavian Journal of Psychology 41 (2000): 197-208. 8 CM. Henriksson, “Living with continuous muscular pain - patient perspectives. Part I: Encounters and consequences.” Scandinavian Journal of Caring Sciences 9 (1995): 67-76; Siv Söderberg, Berit Lundman and Astrid Norberg, “Struggling for dignity: the meaning of women’s experiences of living with fibromyalgia,” Qualitative Health Research, 9 (1999): 575-587. 9 Elaine Scarry, The Body in Pain - The Making and Unmaking of the World (Oxford: Oxford University Press, 1985), 4. 10 Mike Osborn, and Jonathan Smith, “The personal experience of chronic benign lower back pain: an interpretative phenomenological analysis.” British Journal of Health Psychology 3(1998): 65-83; Siv Söderberg, Berit Lundman and Astrid Norberg, “Struggling for dignity: the meaning of women’s experiences of living with fibromyalgia,” Qualitative Health Research, 9 (1999): 575-587. 11 Caroline Sanders, et al. “The significance and consequences of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies,” Sociology of Health and Illness, 24 (2002): 227-253. 12 Caroline Sanders, et al. “Unmet need for joint replacement: a qualitative investigation of barriers to treatment among individuals with severe pain and disability of the hip and knee,” Rheumatology, 43 (2004): 353-357. 13 TE. Thomason, et al. “Cancer pain survey: patient-centred issues in control.” Journal of Pain and Symptom Management 15 (1998): 275-
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284; Sigridur Gunnarsdottir, et al. “Patient-related barriers to pain management: the barriers questionnaire II (BQ-II),” Pain 99 (2002): 385-396. 14 Arthritis Research Campaign. Arthritis: The Big Picture (ARC, 2002). 15 JR. Rice, and David Pisetsky, “Pain in the rheumatic diseases,” Rheumatic Disease Clinics of North America 25 (1999): 15-30. 16 Wim Van Lankveld, et al. “Disease-specific stressors in rheumatoid arthritis: coping and well-being,” British Journal of Rheumatology 33 (1994): 1067-1073. 17 Patricia Minnock, et al. “Quality of life, social support, and knowledge of disease in women with rheumatoid arthritis.” Arthritis Care and Research 49 (2003): 221-227; Turid Heiberg and Tore Kvien, “Preferences for improved health examined in 1024 patients with rheumatoid arthritis: pain has highest priority,” Arthritis and Rheumatism 47 (2002): 391-397. 18 Stella Howden, The Pain of Rheumatoid Arthritis: the different perspectives of patient and rheumatologist (Unpublished Doctoral Thesis. Queen Margaret University College, Edinburgh, 2005.) 19 Anselm Strauss and Juliet Corbin, Basics of Qualitative Research: Grounded Theory Procedures and Techniques (Newbury Park, CA: Sage, 1990). 20 Richard Boyatzis, Transforming Qualitative Information: Thematic Analysis and Code Development (Thousand Oaks, CA: Sage, 1998). 21 Mathew Miles and Michael Huberman, Qualitative Data Analysis. 2nd Edition (California: Sage, 1994): 12. 22 Boyatzis. 23 CR. May; MJ. Rose and FCW. Johnstone, “Dealing with doubt: how patients account for non-specific chronic low back pain,” Journal of Psychosomatic Research, 49 (2000): 223-225. 24 Joseph Kotarba, Chronic Pain: its social dimensions (Beverley Hills, CA: Sage, 1983): 17. 25 Marja-Lissa Honkasalo, “Chronic pain as a posture towards the world,” Scandinavian Journal of Psychology 41 (2000): 197-208. 26 Sanders, 227-253. 27 Robert Kugelmann, “Complaining about chronic pain,” Social Science and Medicine 49 (1999): 1663-1676. 28 Sanders, 353-357. 29 Lance McCracken, et al. “Acceptance and change in the context of chronic pain,” Pain 109 (2004): 4-7. 30 Ibid, 3. 31 Ibid, 4-7. 32 Kathy Charmaz, “Loss of self: a fundamental form of suffering in the chronically ill,” Sociology of Health and Illness, 5 (1983): 170. 33 L. Coster and A. Bengtsson, “Pain in patients with rheumatoid arthritis (RA),” Rheumatology, 40 (2001) (supplement 1): 19.
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34 Joseph Kotarba, Chronic Pain: its social dimensions. (Beverley Hills, CA: Sage, 1983), 17: 23; Caroline Sanders, et al. “Unmet need for joint replacement: a qualitative investigation of barriers to treatment among individuals with severe pain and disability of the hip and knee,” Rheumatology, 43 (2004): 353-357. 35 Peter Salmon and George Hall, “Patient empowerment and control: a psychological discourse in the service of medicine,” Social Science and Medicine 57 (2003): 1972. 36 Julie Barlow, et al. “Educational preferences, psychological well-being and self-efficacy among people with rheumatoid arthritis,” Patient Education and Counselling 46 (2002): 11-19; Sarah Ryan, et al. “Perceptions of control in patients with rheumatoid arthritis.” Nursing Times 99 (2003): 36-38. 37 Vanitha Subramaniam, et al. “The development and impact of a chronic pain support group: a qualitative and quantitative study,” Journal of Pain and Symptom Management 17 (1999): 376-383. 38 Salmon and Hall, 1972.
Bibliography Aldrich, Sarah and Eccleston, Christopher. “Making sense of everyday pain.” Social Science and Medicine 50 (2000): 1631-1641. Arthritis Research Campaign. Arthritis: The Big Picture. ARC, 2002. Barlow, Julie et al.. “Educational preferences, psychological well-being and self-efficacy among people with rheumatoid arthritis.” Patient Education and Counselling 46 (2002): 11-19. Boyatzis, Richard. Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks, CA: Sage, 1998. Cassell, Eric. “The nature of suffering and the goals of medicine.” New England Journal of Medicine 306 (1982): 639-645. Charmaz, Kathy. “Loss of self: a fundamental form of suffering in the chronically ill.” Sociology of Health and Illness, 5 (1983): 168-195. Conrad, Peter. “The experience of illness: recent and new directions.” Research in the Sociology of Health Care 6 (1987): 1-31. Coster, L., and Bengtsson, A. “Pain in patients with rheumatoid arthritis (RA).” Rheumatology, 40 (2001) (supplement 1): 19.
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Gunnarsdottir, Sigridur, Donovan, Heidi S., Serlin, Ronald C., Voge, Catherine and Ward, Sandra. “Patient-related barriers to pain management: the barriers questionnaire II (BQ-II).” Pain 99 (2002): 385396. Heiberg, Turid and Kvien, Tore. “Preferences for improved health examined in 1024 patients with rheumatoid arthritis: pain has highest priority.” Arthritis and Rheumatism 47 (2002): 391-397. Henriksson, CM. “Living with continuous muscular pain- patient perspectives. Part I: Encounters and consequences.” Scandinavian Journal of Caring Sciences 9 (1995): 67-76. Hilbert, Richard. “The acultural dimensions of chronic pain –flawed reality construction and the problem of meaning.” Social Problems 31 (1984): 365-378. Honkasalo, Marja-Liisa. “Chronic pain as a posture towards the world.” Scandinavian Journal of Psychology 41 (2000): 197-208. Howden, Stella. The Pain of Rheumatoid Arthritis: the different perspectives of patient and rheumatologist. Unpublished Doctoral Thesis. Queen Margaret University College, Edinburgh, 2005. Kotarba, Joseph. Chronic Pain: its social dimensions. Beverley Hills, CA: Sage, 1983. Kugelmann, Robert. “Complaining about chronic pain.” Social Science and Medicine 49 (1999): 1663-1676. May, CR., Rose, MJ. and Johnstone, FCW. “Dealing with doubt: how patients account for non-specific chronic low back pain.” Journal of Psychosomatic Research, 49 (2000): 223-225. McCracken, Lance., et al. “Acceptance and change in the context of chronic pain.” Pain 109 (2004): 4-7. Melzack, Ronald. “From the gate to the neuromatrix.” Pain (supplement 6) (1999): S121-S126. Miles, Mathew and Huberman, Michael. Qualitative Data Analysis. 2nd Edition. California: Sage, 1994.
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Minnock, Patricia, et al. “Quality of life, social support, and knowledge of disease in women with rheumatoid arthritis.” Arthritis Care and Research 49 (2003): 221-227. Osborn, Mike and Smith, Johathan. “The personal experience of chronic benign lower back pain: an interpretative phenomenological analysis.” British Journal of Health Psychology 3(1998): 65-83. Rice, JR. and Pisetsky, DS. “Pain in the rheumatic diseases.” Rheumatic Disease Clinics of North America 25 (1999): 15-30. Ryan, Sarah, Hassell, A., Dawes, P. and Kendall, S. “Perceptions of control in patients with rheumatoid arthritis.” Nursing Times 99 (2003): 36-38. Salmon, Peter and Hall, George. “Patient empowerment and control: a psychological discourse in the service of medicine.” Social Science and Medicine 57 (2003): 1969-1980. Sanders, Caroline, Donovan, Jenny and Dieppe, Paul. “The significance and consequences of having painful and disabled joints in older age: coexisting accounts of normal and disrupted biographies.” Sociology of Health and Illness, 24 (2002): 227-253. Sanders, Caroline, Donovan, Jenny and Dieppe, Paul. “Unmet need for joint replacement: a qualitative investigation of barriers to treatment among individuals with severe pain and disability of the hip and knee.” Rheumatology, 43 (2004): 353-357. Scarry, Elaine. The Body in Pain - The Making and Unmaking of the World. Oxford: Oxford University Press, 1985. Söderberg, Siv, Lundman, Berit and Norberg, Astrid. “Struggling for dignity: the meaning of women’s experiences of living with fibromyalgia.” Qualitative Health Research, 9 (1999): 575-587. Stenner, Paul and Eccleston, Christopher. “On the textuality of being towards an invigorated social constructionism.” Theory and Psychology 4 (1994): 85-103. Strauss, Anselm and Corbin, Juliet. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage, 1990.
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Subramaniam, Vanitha, Stewart, MW. and Smith, JF. “The development and impact of a chronic pain support group: a qualitative and quantitative study.” Journal of Pain and Symptom Management 17 (1999): 376-383. Thomason, TE., McCune, JS., Bernard, SA., Winer, EP., Tremont, S. and Lindley, CM. “Cancer pain survey: patient-centred issues in control.” Journal of Pain and Symptom Management 15 (1998): 275-284. Van Lankveld, Wim, Van’t Pad Bosch, P., Van De Putte, L., Naring, G. and Van Der Staaks, C. “Disease-specific stressors in rheumatoid arthritis: coping and well-being.” British Journal of Rheumatology 33 (1994): 1067-1073. Woolf, Clifford and Decosterd, Isabelle. “Implications of recent advances in the understanding of pain pathophysiology for the assessment of pain in patients.” Pain (1999) (supplement 6) S141-S147.
Note on Contributor Stella Howden, PhD, works in the physiotherapy subject area, School of Health Sciences, Queen Margaret University College, Edinburgh, UK. Her research interests include, using qualitative research approaches to explore user’s and provider’s perspectives on healthcare and, in particular, issues related to chronic pain experiences and pain management.
Part 5 Perspectives on Donation
Standardising Semen: Online Personalities and the Negotiation of Health Susan Rogers Abstract This paper goes beyond the social construction of health and illness and investigates the various negotiations that lead to the standardisation of donor semen. The issue is explored within the context of online donor banks which enter into the co-construction of standards with doctors, donors, and the patients/consumers of these services. The market for fertility services is intertwined with the negotiation of health leading to classification systems that are often based on the social rather than medical health of the donor. The seemingly healthy and personified arrays of donor specimens are often squeezed into categories for efficient online perusing while the work behind these classification systems is attributed to a variety of influences. What is found is a finely tuned system for predicting the health of a unit of sperm where social characteristics fuse with objective understandings of biological health. Keywords: biomedical standards, online semen banks, classification systems, social markers of health The following explores some ways that semen is categorized online. I will reflect upon the optimal health of the donor as predominantly translated through his social rather than medical history, as these are crucial characteristics in determining the ‘marketability’ of the materials themselves. I will also explore some of the ways that objective markers for healthy sperm have come to be constructed as such, as well as how these constructions thrive within shifting negotiations among doctors, donors, and patients. I will in turn illustrate how semen is manipulated and infused with social and political meaning through donor banks online. Definitions of ‘good’ and ‘bad’ reproduction will be questioned, as social meanings are increasingly entwined into the expanding market of fertility services. Examples of the classification, standardisation, and objectification of these materials will emphasize the multi-layered negotiations involved in the construction of meanings while describing the semantic evolution of semen. Of issue is how social characteristics are fused with objective understandings of biological health, as well as how categories frame genetic fitness. How do the sperm and eggs of someone beautiful, young, smart, athletic and heterosexual, come to elicit a certain price on the market; or more specifically, how is a biological material personified and marketed? A hierarchy of reproductive materials is most often created
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through classification, where a higher price is paid for the most finely negotiated balance between differences and standards. I begin with a description of the multi-billion dollar sperm and egg industry, and with what has previously been described as stretching the elasticity of what was once considered an inelastic market.1 This is followed with an overview of industry practices of standardisation and an exploration of the cultural role of semen, specifically, of the ways that learning about sperm often unfolds. I then explore some of the embedded meanings in the marketing of these materials, especially with regards to gendered and racial classifications. What emerges is a finely tuned system for predicting the health of a unit of sperm where social characteristics fuse with objective understandings of biological health. 1.
The industry Despite the secrecy surrounding artificial insemination in the early part of the twentieth century, it has been estimated that by 1950 there had been approximately 100,000 donor children born in the United States, and many more in countries where it was more widely practiced, such as the United Kingdom, Germany, Norway, Holland, Sweden, Finland, and Israel.2 By 1977, the minister of health and welfare in Canada had decided that artificial insemination techniques, which were becoming increasingly popular, would continue to increase, mostly due to “the reduced availability of infants for adoption, and because of the desire of a woman to bear her own child.”3 Prior to this statement, however, the annual meeting of provincial health ministers in the fall of 1974 resulted in a recommendation to the Canadian federal government to prohibit the storage of sperm until research and control studies could be carried out. The federal Minister of Health soon assembled an advisory committee which offered suggestions on ethics, standards, and protocols for the use of frozen human semen. Since that time, it has been possible to store, ship and exchange semen in Canada. As a multi-billion dollar industry in the United States, reproductive technologies constitute a lucrative undertaking for the increasingly profit-oriented medical industry and other financially minded groups. Some have insisted that “Infertile couples are seen as an underserved, infinitely expandable market, a market willing to supply substantial outof-pocket funds when denied access by insurers to managed care organizations.”4 Besides the traditional market of infertile couples, Lisa Jean Moore and Matthew Schmidt have pointed to the expanding market of human semen, by noting that It seems as though the demand for bank-owned semen is relatively inelastic; in other words, outside of the three obvious groups – infertile couples, single women, and lesbians – not many people would choose to use semen banks. If this is indeed plausible, then
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challenging this inelasticity may become the foundation on which semen banks construct, represent, and market semen.5 Indeed, reproductive services are increasingly expanding beyond traditional borders and challenging inelasticity through a variety of tailored services. Perhaps the fastest growing area in assisted reproduction has been in-vitro fertilization, which was estimated in 1999 as generating annual revenues of approximately $2 billion dollars in the United States.6 Since the first commercial semen bank in 1972, the market increasingly serves as one of the many intersecting social worlds for assisted conception.7 These materials are discursively transformed into sites which “reveal the values and ideologies of those involved in their production (as well as the external marketplace).”8 More specifically, they “become sites of knowledge production about men.”9 Efficiency and global standardisation are rapidly evolving online through electronic fertility centres, personal websites, sperm and egg auctions and donor banks. Besides the fact that an online bank can cut fertility costs by providing detailed database information pertaining to donors without a prior meeting with a physician, and can reduce travel times for fertility treatments – which was otherwise a problem of controlled testing for fertility success rates10 – they also offer the possibility of perusing many different kinds of donors from a variety of facilities at once. The suppliers of these materials often tailor their services to the wants of their clients/patients through finely tuned categorization, which includes standardizing reproductive materials through various techniques that ultimately translate in terms of price to the customer. Among these, semen is screened for both genetic and infectious diseases, as well tested for motility, washed, and suspended in similar fluids. Lisa Jean Moore and Matthew Schmidt (1999) have aptly named this product ‘technosemen’ and assert that “Marketing technosemen can alter the assumed inelasticity of the semen market by convincing, or better yet guaranteeing, the general public that technosemen is fertile, uncontaminated, and genetically ‘engineered’ for desirable traits.”11 The first signs of technosemen in Canada can be found in the 1977 report on the storage and utilization of human sperm by the advisory committee to the Minister of National Health and Welfare. In this report, the first “standards for the acquisition, preservation, and importation of sperm” are outlined, including genetic and infectious disease screenings and several psychological evaluations of the donor. A physical examination of the donor is also recommended, where ‘non-trivial malformations’12 such as cleft lip, cleft palate, and clubfoot among many others are deemed medically unacceptable. Standards were also extended to the family members of donors, with family traces of asthma, rheumatoid arthritis, and psychosis being unfavourable indicators of donor health. The efficiency with which these new techniques operate is exemplified through donor search engines which facilitate the reproductive pro-
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cess through online semen-selection. Models include the ‘Power Search,’ available from California Cryobank Inc.,13 which offers a quick route to customized acquisition. Specialized features such as the Power Search offer consumers of these materials convenient categories from which they may attempt to manage genetic risk by selecting categories on a pull down menu. They also propose screening for nine genetic diseases, as well as for eleven sexually related infectious diseases. Interestingly, the social is woven into the medical discourse of semen selection on here, with a noteworthy emphasis on religion14 undertaking the meaningful possibilities of objective scientific screening. Figure 1. The Power Search15 Welcome to our online Power search! Use the Power Search to get a list of all available donors, or to sort our donor list by characteristics or available services. This feature allows you to select key characteristics that you are looking for in a donor and our computer system will provide you with a list of our donors that meet those characteristics. You can then purchase and download donor information. If you would like to view the entire catalo, go to the bottom of the page and click on “Find”. If you already know the donor ID of your selected donor, enter in the ‘Donor ID#’ field and click on “Find”. By providing more general characteristics in your search you will receive a greater number of donors to choose from. Click here to view our list of donors with at least one Jewish ancestor
Through marketing semen in this way, the basic properties that make up the actual material – “a mixture primarily of prostaglandin, fructose, and fatty acids combined with 10 percent sperm cells”16 – is disciplined and infused with social meanings. Smart semen, gay semen, beautiful semen, and religious semen may not only vary in price, but will be held to objectively possess these qualities as they are observed as categorized standards. Price is often a product of supply and demand, but the social and political negotiations that are taking place behind the construction of what is supplied and what is demanded is largely due to those who play the triple role of patients, consumers, and research subjects of these treatments. This is an extension of Steven Epstein’s notion of the double role of the AIDS patient/research subject,17 which transformed the way that scientists understood the co-evolution of scientific knowledge with the social. Fertility specialists have come to understand that their patients are not simply patients, but consumers of technology, as well as educated research subjects who are willing to experiment with their bodies as long as their opinions regarding treatment are taken into account. Fertility practices have evolved with those whose bodies they are used on, and standards have shifted to meet new criteria of heath as defined by customers, and not only patients and research subjects.
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Standards Ways in which these materials are offered is often tailored to what the patient deems healthy, and just as in other industries, desirable goods most often go to the highest bidder. At ronsangels.com, this principle is taken literally, as the sperm and eggs of supposedly brilliant and athletic models are auctioned as superior stock with bids starting at $15,000, to be increased in increments of $1000. Bidding on sperm and eggs is no different than bidding on a pair of shoes at E-Bay on this site, which insists, “All genetic modifications serve to improve the shape, colour, and traits of the organism.” This insistence upon the certainty of physical characteristics allows for a more marketable product, regardless of medical certainties. Standards at ronsangels.com are clearly based on social and not medical criteria, as donors are all said to be fashion models, hence the notion that their genetic material is endowed with fashion model properties. Consumer demand for personified semen will undoubtedly reap a diverse array of sperm personalities. Some of the most sophisticatedly marketed online reproductive materials and accessories are offered through fertility centres. These often have the most thorough donor screening available, and might charge extra for tailored services such as donor videos or audiotapes, or detailed biographies. At these sites prospective online parents are offered the same services as the clients who physically enter their facilities, such as the chance to examine donor summaries which constitute standardized medical, physical, and psychological profiles. The Fairfax Cryobank18 located in Fairfax, Virginia, claims to provide “a large selection of the most up-to-date genetic and infectious disease tested donor semen”. Their massive offerings of variously categorized semen samples allow them to remain competitive on a global scale. They will encourage their online clients to take advantage of discounted shipping with the purchase of 6-11 units of sperm, offer free delivery for 12-17 units, and waive overnightshipping charges with the purchase of more than 18 units. Of course, a schedule of fees posted on their website warns that an $825 deposit is required for a liquid nitrogen tank to deliver the frozen materials, all part of a discourse of “convenience over cost in making lifestyle decisions.”19 Selling the sperm in units such as this furthers its travel into realms of convenience and standardisation by offering the promise of perfectly measured doses for optimum success potential with impregnation. More often than not, “Donors who do not rate highly within these categories are not included in these catalogues, nor presumably is their semen stored in banks as sellable inventory.”20 Most importantly, the ‘sellable inventory’ did not emerge on its own, but is a product of socially, politically, and culturally specific discourses which then infuse the genetic materials with value and meaning. Marc Berg has explored the ways that tools and practices are produced together, and not separately, finding their ways through points of convergence in intertwining networks. These points are crucial in understanding how tools like cryogenic freezing tanks
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and information technology have transformed the practice of artificial insemination. He explains, “‘convergence’ also points at the fact that characteristics of ‘tool’ and ‘practice’ are not pre-given but rather emerge in and through the intertwining of the networks.”21 The networks, however, are not static, fortified grids, but instead imagined as constantly shifting, multi-dimensional, open-ended arenas of activity. Of special interest here are the ways in which tools such as cryogenic freezing and information technology have converged with fertility clinic practices, and the ways in which women have negotiated their needs within a culture of convenience. Following Berg, I will not necessarily consider these convergences as successes for the online reproductive exchange industry, but have instead considered that there is a temporal context for their emergence within ‘intertwining networks’. In 1975, the Canadian province of British Columbia’s Royal Commission issued the Report of the Royal Commission on Family and Children’s Law in British Columbia, which called for chronicling the most detailed biological, psychological, and physical dimensions of the sperm donor. These included chromosomal and metabolic testing, as well as detection for Rh blood types, counselling for ‘psychologically stressed’ individuals, as well as instructions for the physician to take into consideration the effect of donation upon his family and household (only married men with ‘known proof’ of producing healthy offspring were deemed eligible by the Anglican Church, who sponsored this early report).22 As Steven Epstein (1996) points out, patients since the early 1980’s with AIDS became the most medically educated group of patients that doctors and scientists had ever seen, and many AIDS patients knowledge of their own medical needs rivalled professional knowledge. Likewise, today’s fertility patient is equally as schooled in the scientific aspects of their condition and needs, and this is often reflected in the technical wordings of the standards that are revealed to patients. Figure 2 illustrates the fertility expert’s recognition of situated knowledge and addresses patients concerns for procedural standards.
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Figure 2.23 Donor Standards Our donors are recruited from the school campuses of western Montana and eastern Washington. Most of our donors are either currently involved with, or have finished their higher education at the time of their participation in our donor program. All donors are between 18 and 35 years of age in order to minimize genetic abnormalities. All donors are frozen in very limited quantities, in order to guarantee that the number of pregnancies created from any one donor are limited. We are unaware of any lab that tests donors more than we do. Our donor screening meets or exceeds the standards set forth by the AATB, ASRM, and CFAS. (American Association of Tissue Banks, American Society for Reproductive Medicine, and the Canadian Fertility and Andrology Society) Donor Screening includes the following:
x x x x x x x x
Three generation family health history with no indication of major genetically linked disease Donors must have a lifestyle that is low risk for contracting communicable diseases. Complete physical exam, and approval by an independent physician Donors are questioned and examined for evidence of HPV infection, but there is no currently approved testing for HPV in semen, (even if other banks claim there is). Urinalysis and Microscopic Exam Semen Analysis with excellent count, motility, and normal strict morphology study Drugs of Abuse Screening Excellent post thaw sperm recovery
Serology:
x x x x x x x x
CBC, Chem 23 Panel, ABO and Rh HIV I/II w/six month quarantine (EIA testing, with Western Blot use for confirmation) Hepatitis BsAG Hepatitis B Core Total Hepatitis C w/six month quarantine Herpes type II (genital) by type specific antigen RPR (for syphilis) HTLV I/II
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CMV IgG,IgM ** All Donors are IgM Negative
Genetic Testing:
x
x
Cystic Fibrosis Mutation Analysis, 99%detection rate for all races, entire CFTR read the most comprehensive Cystic Fibrosis screening available anywhere, with testing for not the most common 25 or 37 mutations as most labs do, but for more than 1300! Testing is performed by Ambry Genetics Laboratory Tay Sachs, Sickle Cell, if indicated by donor history and/or blood panel
Cultures and/or Aptima Gen Probe testing is completed for:
x x x x
Neisseria Gonorrhoea Chlamydia Herpes Simplex CMV
Microscopical Examination of each Donor ejaculate for:
x x x
freeze-thaw recovery motile sperm count Trichomonas Yeast
Of special interest here is the degree to which patients are included in the scientific processing of semen. The heightened standards of this bank are used as a form of marketing in itself, indicating that increased standardisation is indeed a step in the right direction to higher quality semen. The bank proudly states that screening for cystic fibrosis goes beyond “25-37 mutations as most labs do” to “more than 1300!”. Interestingly, the bank even tries to standardize lifestyles and infections for which there is no medical testing available. 3.
Culturally embedded notions of sperm The cultural embeddedness of online sperm selection is inescapable. The next section will explore some of the dominant discourses that have aided in shaping this process, but I now turn to the shifting semantic structure supporting the objectification of sperm. Indeed, the language involved dictates ‘donor selection’, implying that the actual donor is what is being selected and not simply a unit of his frozen semen. Lisa Jean Moore24 has explored the way that books about human reproduction for children and teenagers emulate social notions of gender. Likewise, Emily Martin25 has taken the position that “scientific accounts of reproductive biology relies on stereotypes central to our cultural definitions of male and female.”26 Both tell of culturally embedded notions of sperm, and of the scientific discourses that enforce gender roles.
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Moore emphasizes that ‘coming of age’ books in general ‘ease’ children “into science, a marker of maturity”.27 Fairy tales, fables, and sex education books are all part of this rhetoric, and important structures for the dissemination of information concerning the science of reproduction. While motility, morphology, and sperm count are key elements in the production of ‘good’ sperm, discourses of relationships between the egg and sperm are consistently woven into elementary explanations of reproduction. Sperm comes to take on an active role in self-referential meaning construction, adhering to social laws that are undoubtedly framed in time and space. The use of socially and culturally normative language in science extends beyond the learning that is carried out through children’s books. Learning through scientific textbooks is also a hetero-normative process of language use. Emily Martin says that these textbooks “celebrate sperm production,”28 and goes on to say that “We need to understand the way in which the cultural content in scientific descriptions changes with biological discoveries, and whether that cultural content is solidly entrenched or easily changed.”29 She finds that stereotypical language prevails in scientific textbooks. These views are re-written and repro-duced, supporting her claim that these are solidly entrenched notions which are difficult to change. While American narratives in the 1950s insisted upon reproduction between a man and his wife, the late 1990s have brought about some (although limited) discussion of artificial insemination. This is done by introducing the egg and sperm to each other in laboratory dish, which extends the language of personification and the social relationship of these materials to one another. Narratives of reproduction are interwoven into the collective conscience and facilitate the work of classifying sperm. 4.
Classifying semen The classification of semen might be largely due to what Geoffrey C. Bowker and Susan Leigh Star (1999) refer to as “convergent bureaucracy.” They assert, “Throughout this century, in general, people have become more and more used to being counted and classified.”30 Concerning donor insemination (DI), Moore and Schmidt say “Despite its revolutionary potential, DI is increasingly represented in hegemonic genetic and reproductive medical discourses as requiring the intervention of many competing professionals and the use of advanced technologies.”31 They also cite a decrease in the physician’s control over institutional practices as leading them to more profitable and controllable ventures – “Semen banks are industrial sites in which health care providers attempt to stake professional claims.”32 Efficient communication through a global online network of patients has become fully integrated as a result of both increased profitability and controllability. The exchange of wombs, sperm, eggs, and embryos on the Internet is incalculable, and continues to grow in diverse ways through a range of convergences between medical fertility practices and information technology. The meanings exchanged here are
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diverse, but are all socially constructed, embedded, and constantly coevolving. Coding the body is a semantic project that can only be undertaken within specific social contexts. The semantics involved in the reproductive process itself has been theorized as inherently a product of patriarchal forces according to some feminists. Lisa Jean Moore has expressed this view, with reference to the reproductive process in children’s books that perpetuate “capitalist, patriarchal and hetero-normative socio-cultural norms.”33 The meanings that embed reproductive materials inevitably lead them to become personified, allowing consumers of these to search for the ‘right’ materials for them, i.e., ones that fit their lifestyles, tastes, and sometimes prejudices. As Moore and Schmidt have noted Compatibility and socially desirable properties such as evidence of upward mobility, intelligence, and social integration are portrayed as important in choosing the right semen. Efforts are clearly made to convince the woman that she is choosing a man rather than wriggly little cells. Sperm may be disembodied, but they are vividly personified.34 The construction of categories then, lends something tangible to the personification of these materials, allowing patients to recognize them as simultaneously standard and unique. Every reproductive tissue service will offer information pertaining to the genealogical roots of their materials. These are classified in similar ways by the banks themselves, and are often based on the selfreporting of individuals prior to donation. In terms of the racial embeddedness of these materials, it seems obvious that racial classifications are constructed based on a variety of social discourses. Above all, these banks are perpetuating what Melbourne Tapper has described as outdated anthropological beliefs in racial markers through “physiognomy (what does the patient look like?) and genealogy (who are his or her ancestors, and where did they come from?).”35 Categories are confusing as well as confused, both blurring and separating lines between race, ethnicity, and religion for the purpose of classification. These categories often permit concepts of racial purity and impurity. Physiognomy plays a huge part in semen exchange, most notably due to many recipients’ desire to have a child appear as though it is ‘naturally’ theirs. Religion, too, has come to play a part in the social infusion of semen, a product of the recipient’s need to create a child most closely related to themselves. However, religion was not always considered a marker of ‘good’ sperm. For example, in Vancouver, May 1975, the Ninth Report of the Royal Commission of Family and Children’s Law; Artificial Insemination put forth a model agreement form for donor use, of
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which one of the statements is “I understand that no consideration will be given to the religion of either the donor or the recipient.”36 An example of sperm donors below in Figure 3 illustrates how these criteria can become problematic markers for genetic speculation, and how individuals might become ‘squeezed’ into categories for the sake of categorization, and nothing more37. Categories are further confused here through the insertion of ‘Jewish’ as a race with ‘Jewish’ again as an ethnic sub-category. And what are we to make of the racial category ‘Caucasian’, with its variety of sub-categories for ethnicity? Are those who listed an ethnicity other than ‘Caucasian’ simply those who have at least one relative in the family who has kept their genealogy alive? Again, as Tapper points out, there is racial purity being constructed here that simply does not exist. Clearly, this form of categorization aims for user-friendly donor selection resulting in social, and not purely physical implications of the donor. Also typically listed in this table are categories for education and sexual orientation. Interestingly, this donor list was taken from a gay sperm bank, which caters specifically to homosexuals who wish to reproduce – a demographic not typically accounted for by most fertility centres. The gay sperm bank offers more gay donors than heterosexual ones, again customizing a unit of frozen semen enough for potential consumers of this service to feel comfortable with the person that they choose to procreate with. A category for sexual orientation is often not included in the marketing of sperm to infertile heterosexual couples. When it is, heterosexuality is all too often clearly implied as what can be thought of as sellable inventory. Sperm banks market collective standards, based on presumably common interests; however, these standards are not averages at all, but ideal types. It is obvious that sperm and eggs are objects discursively transformed into categories enabling the efficient management of genetic risk. Materials are literally transformed for the process of categorization. Sperm is washed, suspended, and screened, eggs are multiplied, retrieved and frozen before they age. A hierarchy of technologically produced, riskfree products is then produced and marketed as such. Figure 4 illustrates the degree to which sperm donors are often asked to fit criteria in order to meet standards of good health. Interestingly, the first criterion is ambiguous enough to require the donor to be ‘in general good health.’ Of note here too, is the blurred line between a lifestyle and medical requirement that the donor ‘practice safe sex.’ By listing these requirements together with other indicators like ‘have no genetic family disease’, the lines between sperm as object and sperm as socially acceptable mating tissue are blurred.
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Figure 3.38 Racial categories with sub-categories for ethnicity, age, height, weight, eye colour, hair colour, education and sexual orientation. Asian Donor#
Ethnicit y
Age *
Ht
Wt
Eye Color
Hair Color
Education
Sex Orient
5-102403
Chinese
31
5’5 ”
15 8
Brown
Black
Graduate Deg
Het
44-131907
Indian
35
5’8 ”
14 0
Brown
Brown
Graduate Deg
Het
Jewish Donor#
Ethnicity
Age*
Ht
Wt
Eye Color
Hair Color
Education
Sex Orient
10-230319
Jewish
27
6’1 ”
160
Green
Brown
Graduate Deg
Het
32-100808
Jewish
50
5’7 ”
142
Brown
Brown
College Deg
Het
Latino Donor#
Ethnicity
Age*
Ht
Wt
Eye Color
Hair Color
Education
Sex Orient
38-131213 §
Mexican, Lebanese
42
6’4 ”
180
Brown
Brown
College Deg
Gay
Caucasian Donor# Ethnicity
Age*
Ht
Wt
Eye Color
Hair Color
Education
Sex Orient
4-112304
Polish, Slavic
38
5’7”
175
Green
Brown
Some College
Gay
3-160119
Norwegia n, Irish
42
5’9”
165
Blue
Brown
Graduate Deg
Bi
12101612
Caucasian
37
5’8”
220
Green
Red
College Deg
Gay
14231920
Irish
44
5’6”
145
Brown Hazel
Brown
College Deg
Gay
15012713
Caucasian
27
5’11 ”
155
Brown
Brown
Graduate Deg
Gay
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Figure 4. 39 Donor requirements What are some of the requirements to be a donor? You must be:
x x x x x x x
In general good health. HIV negative. Practice safe sex. Have no genetic family diseases. Under 55 years of age. Be willing to have a physical exam, blood tests and fill out a questionnaire. Make a commitment to provide 15 to 20 sperm samples over 4 to 8 months.
Our donors are screened for the following: HIV 1 & 2
Syphilis
Hepatitis B & C
HTLV 1
Cytomegalovirus (CMV)
Gonorrhea
Chlamydia
Myco/Ureaplasma
Blood Type
Complete Blood Count
Liver and Kidney Function
Past medical history
As previously mentioned, Figure 4 offers insight into the production of technosemen. This type of marketing allows the recipient of these services to imagine the most genetically superior specimen available, engineered for maximally desirable traits and fertile enough for the most expedient results. This kind of categorization and standardisation will undoubtedly “reinforce and bolster public concern about the material threats to the future of the human race.”40 It is clear that the increased standardisation and categorization of these materials leads the consumer/patient to perceive these new risks to a greater extent, while the capacity for managing these imagined threats is simultaneously offered. Ironically, the consumer/patient would not know about the realm of genetic risks to manage if not confronted with them in this way. Figure 5.41 New dimensions of standardisation Sperm Washing Semen is washed to separate the sperm from the accompanying seminal fluid prior to intrauterine insemination. The two most common types of washes performed by California Cryobank, Inc. are:
x x
Density Gradient Wash - sperm are separated from the accompanying seminal fluid on the basis of their motility in a continuous gradient. The sperm containing layer is then washed again to remove the gradient media. Standard Wash - semen is rinsed in a salt buffered media and centrifuged to separate the sperm
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Figure 5 illustrates how technology provides the patient with dimensions of standardisation that would not have been imagined. Once introduced however, this procedural standard is repeatedly expected. Lord Kilbrandon, a British Legal authority, had referred to the genetic testing of donor sperm in 1973, acknowledging “most of us when we get married take our chances on genetic history.”42 There is conceivably more room for error when nature is involved in reproduction, but science is expected to yield predictable results, hence expectations for semen are inevitably higher when it comes from a lab rather than directly from a body. I have focused on some of the social and cultural constructions that have enabled the online exchange of sperm to paradoxically sell social characteristics through the re-creation of semen as a standard, categorized unit, rendering it at once a standardized object and a potential mate. More specifically, I’ve explored the social meanings that infuse these materials in order to enable categorizations. Sperm and eggs, as reproductive commodities, are not simply biological materials, universally meaningful on their own, but rather, they are socially and politically infused with meaning, categorized, and standardized with the end result being a site from which we are able to construct a viable social image. From sexual practices, to race and beauty, the health of a donor is embedded in the language that is used to classify reproductive tissue. This language is linked to social and political discourses, by which semen both forms and is formed by the social on a consistent basis. Meanings of healthy semen vary within the contexts in which they are created, and what is considered healthy for semen recipients and donors is most often derived through social, rather than medical criteria. All understandings of health in this way are reflexively created through the classification, standardisation, and objectification of semen. When sperm banks create delineated social categories of semen out of seemingly similar reproductive materials, a temporally situated classification system emerges, in this case, within a paradigm of convenient online consumption.
Notes 1 See: Lisa Jean Moore & Matthew A. Schmidt, “On the construction of male differences: Marketing variations in technosemen.” Men and Masculinities. 1 (1999): 331-351. 2 W. Finegold Artificial Insemination. (Springfield: Charles C. Thomas, 1964), 56. 3 Health and Welfare Canada. Storage and Utilization of Human Sperm: Report of the Advisory Committee to the minister of National Health and Welfare. (Ottawa: Health and Welfare Canada, 1981), ix. 4 Susan M. Squier Babies in Bottles: Twentieth-century visions of reproductive technology (New Jersey: Rutgers University Press, 1994), 81.
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5 Moore and Schmidt, 333. 6 Cussins, C. Ontological choreography: Agency through objectification in infertility clinics. Social Studies of Science. 26 (1996): 575-610; Napoli, 1999. 7 Moore and Schmidt, 1999. 8 Ibid. p. 334. 9 Ibid. p. 339. 10 D.W. Richardson et al Frozen Human Semen (London: Martinus Nijhoff Publishers, 1980), 150. 11 Moore and Schmidt, 340. 12 Health and Welfare Canada. 7. 13 www.cryobank.com 14 I am particularly referring to an advanced search tool available on the Power Search which allows users to view a list of donors with at least one Jewish ancestor. 15 www.cryobank.com 16 Moore and Schmidt, 334. 17 Steven Epstein. Impure Science: AIDS, Activism, and the Politics of Knowledge. (Berkeley: University of California Press, 1996). 18 http://fairfaxcryobank.com 19 Mark Abrahamson Global Cities (New York, Oxford: Oxford University Press, 2004), 33. 20 Moore and Schmidt, 346. 21 Marc Berg Rationalizing Medical Work. Decision Support Techniques and Medical Practices (Cambridge, Mass.: The MIT Press, 1997), 167. 22 Phyllis Creighton Artificial Insemination by Donor: A study of ethics, medicine, and law in our technological society. (Toronto: The Anglican Church of Canada, 1977), 29. 23 http://www.nwcryobank.com/donor_standards.html 24 Lisa Jean Moore “‘Billy the sad sperm with no tail’: Representations of sperm in children’s books.” Sexualities, 6 (2003): 277-300. 25 Emily Martin “The egg and the sperm: How science has constructed a romance based on stereotypical male-female roles.” Signs. 16 (1991): 485-501. 26 Martin, 485. 27 Moore, 281. 28 Martin, 488. 29 Martin, 492. 30 G.C. Bowker and S.L Star Sorting Things Out: Classification and its Consequences. (Cambridge, MA: The MIT Press, 1999), 153. 31 Moore and Schmidt, 332. 32 Moore and Schmidt, 333. 33 Moore, 278. 34 Moore and Schmidt, 343.
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35 Melbourne Tapper In the Blood: Sickle Cell Anemia and the Politics of Race. (Philadelphia: University of Pennsylvania Press, 1999), 18. 36 Creighton, 66. 37 See racial category ‘Latino’, with ethnicity listed as ‘Mexican/ Lebanese.’ 38 http://www.gayspermbank.com/donorlist.htm..’Age’ indicates age at the time of donation. 39 www.gayspermbank.com 40 Moore and Schmidt, 340. 41 http://www.cryobank.com/andro.cfm?page=2&sub=1 42 Crieghton, 28.
Bibliography Abrahamson, Mark Global Cities. New York, Oxford: Oxford University Press, 2004. Berg, Marc. Rationalizing Medical Work. Decision Support Techniques and Medical Practices. Cambridge, Mass.: The MIT Press, 1997. Bowker, G.C. & Star S.L. Sorting Things Out: Classification and its Consequences. Cambridge, MA: The MIT Press, 1999. Clarke, Adele. “A social worlds research adventure: The case of reproductive science.” In Theories of Science in Society, edited by S.E. Cozzens & T.F. Gieryn, 15-42. Bloomington: Indiana University Press, 1990. Clarke, Adele Disciplining Reproduction: Modernity, American Life Sciences, and ‘The Problems of Sex’. Berkeley: University of California Press, 1998. Creighton, Phyllis Artificial Insemination by Donor: A study of ethics, medicine, and law in our technological society. Toronto: The Anglican Church of Canada, 1977. Cussins, C. Ontological choreography: Agency through objectification in infertility clinics. Social Studies of Science. 26 (1996): 575-610. Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press, 1996. Farquhar, Dion The Other Machine: Discourse and reproductive technologies. London: Routledge, 1996.
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Finegold, W. Artificial Insemination. Springfield: Charles C. Thomas, 1964 Firestone, Shulamith The Dialectic of Sex: The case for feminist revolution. New York: Bantam, 1971. Health and Welfare Canada. Storage and Utilization of Human Sperm: Report of the Advisory Committee to the minister of National Health and Welfare. Ottawa: Health and Welfare Canada, 1981. Kaplan, A. E. & Squier, S. (Eds.) Playing Dolly: Technocultural formations, fantasies, and fictions of assisted reproduction. New Jersey: Rutgers, 1999. Martin, Emily “The egg and the sperm: How science has constructed a romance based on stereotypical male-female roles.” Signs. 16 (1991): 485501. Moore, Lisa Jean “‘Billy the sad sperm with no tail’: Representations of sperm in children’s books.” Sexualities, 6 (2003): 277-300. Moore, L.J. & Schmidt, M.A. “On the construction of male differences: Marketing variations in technosemen.” Men and Masculinities. 1 (1999): 331-351. Napoli, Maryann “Fertility clinics release success rates-an important but imperfect guide. Healthfacts, 5 (1999): 24. Rapp, Rayna Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge, 2000. Richardson, D.W., Joyce, D., & Symonds, E.M. Frozen Human Semen. London: Martinus Nijhoff Publishers, 1980. Squier, S.M. Babies in Bottles: Twentieth-century visions of reproductive technology. New Jersey: Rutgers University Press, 1994. Tapper, Melbourne In the Blood: Sickle Cell Anemia and the Politics of Race. Philadelphia: University of Pennsylvania Press, 1999. Timmermans S. & Berg. M. “Standardisation in Action: Achieving Local Universality through Medical Protocols.” Social Studies of Science, 27 (1997) 273-305.
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Timmermans, S. & Leiter, V. “The redemption of thalidomide: standardizing the risk of birth defects.” Social Studies of Science, 30 (2000): 41-71. Websites (11 Jan 2005). (20 May 2005). (11 Jan 2005). (Jan 20 2005) (Jan 20 2005).
Note on Contributor Susan Rogers is a doctoral student at the departments of Sociology and Social Studies of Medicine at McGill University. She is currently working under the direction of Dr. Alberto Cambrosio and pursuing the social history of biomedical standards.
Media Treatment of Organ Donation: A Case Study in Switzerland Peter J. Schulz Abstract Improvements in transplant medicine have transformed transplantation from an experimental enterprise to a therapy of choice for patients with organ failure. The main obstacle to continued progress is the growing gap between the numbers of patients needing a transplant and those receiving one. In Switzerland, as in many other countries, the supply of organs for transplanting remains far short of the demand. This shortage is partly due to the lack of awareness of the population concerning organ transplantation. Statistics about the regional donor rate in Switzerland over the last years, however, show that there are considerable differences between the German and French speaking area on one hand, and the Italian speaking canton Ticino on the other. The canton Ticino ranks fairly high with respect to the number of donations (averaging 37-42 donations per million inhabitants in the last three years), while the organ donation rate in the other linguistic areas of Switzerland, and in the German speaking part in particular, is rather low. One possible explanation for this variation among the main linguistic areas in Switzerland is that this attitude towards organ donation depends mainly on the information available in the massmedia. We thus conducted a content analysis in order to see whether media coverage in the canton Ticino is more comprehensive, informative and less controversial than in other linguistic areas of Switzerland. This paper will present how, when and in which form (positive or negative statements) the media reported on organ donation between 1999-2003. It addresses willingness to sign donor cards, exploring the information sources of the Swiss population between 1999 and 2003. The study should be viewed as part of an investigation into the reasons of the small number of people holding a donor card despite a positive attitude of the Swiss population towards organ donation. Keywords: organ donation; content analysis; media coverage Switzerland 1.
Introduction Organ transplantation is considered a marvel of modern technology. For many illnesses, organ transplantation represents the only option for life-saving therapy and offers a substantial improvement in the quality of life. However, the capabilities of modern transplantation med-
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icine create not only new hope for many terminally ill patients, but also a number of medical, psychosocial, ethical and economic problems. The primary obstacle to the performance of transplantations usually do not lie in their technical feasibility, nor in surgical mortality or rejection problems, but rather in the limited number of donor organs in relation to the number of patients who could be helped by transplantation. In Switzerland, approximately 55 patients died in 2003, and an additional 43 in 2004 while waiting for an organ.1 Despite major educational campaigns among the general public, the supply of organs for transplanting remains far short of demand. Despite twenty years of work by Swisstransplant and other agencies in Switzerland to increase citizen acceptance of and participation in organ donation programs, public response has been limited. Overall, the rate of organ donation in Switzerland – 12.6 per million population (pmp) – lags behind participation in other European countries such as Spain (33.6 pmp), Austria (25.9 pmp) and Belgium (25.2 pmp). There are, in addition, substantial differences in organ donation among the three main linguistic areas in Switzerland – the German, French, and Italian-speaking areas.2 The Italian speaking area (Canton Ticino) has a relatively high participation rate with an average of 35.4 donations pmp. In contrast, the organ donation rate in the other linguistic areas of Switzerland is quite low – 11 pmp in the German area and 16 pmp in the French area. One factor explaining the low penetration of organ donor cards within the population is widespread ignorance regarding the topic.3 As in other Western countries,4 there is not much fundamental opposition against organ donation in Switzerland as we have shown in a representative survey in 2004.5 In fact it is striking that a large part of the Swiss population is open to the idea of organ donation but still could not be moved to date to sign an organ donor card. There might be different reasons. Besides “moral” arguments and objections there is a widespread lack of knowledge regarding the concrete steps one has to take to become an organ donor: where do I get more information and the organ donor card itself? Beside this lack of procedural knowledge, there might be other forms of ignorance that explain why there is a high number of people who are willing to donate organs but few card holders. Generally speaking, the mass media play an important role in the public’s perception of organ transplantation.6 Among the different sources of information about organ donation, the mass media, and in particular television and newspapers, have the greatest impact on the population.7 Several studies show that the content of the information and the way in which it is presented significantly influence opinion on and attitudes toward donation.8 Some authors have expressed concern that negative, sensationalistic media coverage would impact interpersonal discussions about organ donation which would ultimately result in a lower consent for donation.9 Among the limited prior research on how media report on organ donation, Maloney and Walker have shown a generally favorable shift in media coverage in Australia.
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Their study charted fluctuations in media framing of organ donation from Frankenstein-like dissection of the human body by surgeons portrayed as vultures or vampires in the earliest years of media coverage to a recipientor donor-centered perspective in the mid-1990s.10 The assumption that people get much more of their knowledge on organ donation from the media rather than through personal experience or interpersonal communication had also been confirmed by a representative survey we conducted in Switzerland. Asked from which channels they had ever received information on organ donation, 86% answered that they had received information from newspapers and magazines and 79% from television, but only 42% from friends and even less, about 30%, from relatives.11 Frequent and informative reporting in the media should therefore raise the population’s awareness and improve its knowledge. Given the substantial differences in organ donation among the three main linguistic areas in Switzerland, we wanted to find out with a quantitative content analysis on newspaper reporting on the topic between 1999 and 2003 whether the high participation rate in the Canton of Ticino parallels a high level of media coverage of the issue. We hypothesized that German and French speaking newspapers, in contrast, should report relatively infrequently and exclusively when current events compel them to do so. In addition, frequent reporting should be especially meaningful if it conveys not only general legal information but also concrete information on how to become an organ donor. As well, positive and uncontroversial reporting should lead to a more positive attitude, and the low donor rate in German speaking Switzerland should make us expect a more critical and controversial coverage there. 2.
Swiss Media Coverage on Organ Donation We chose to sample fifteen large Swiss papers in German, French and Italian published between 1999 and 2003. The time frame was chosen because the Swiss population had approved an amendment to the constitution in February 1999 with an article on “scientific manipulations of the human body,” including the provision to create a national law regulating organ donation. Before that, every canton had its own regulations or, in fact, none at all. The Swiss population amended the constitution by popular vote in early 1999 to include article 119a, which gave the federal government authority to regulate organ donation. It also instructed the government to pass a corresponding national law. According to this law, Switzerland will operate in the near future with the so-called “opting-in” system instead of presumed consent (normally referred to as “opting-out”). The “opting-in” requires explicit consent from donors (i.e., by signing the uniform donor card) or their relatives in the event that prospective donors have failed to indicate their desire to donate during their lifetime. In addition to this regulation of consent, the role of information on organ donation has become even more important because of the decision of the
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Federal Court that any information pertaining to organ donation that is divulged in a future campaign must be thorough, effective and regular. Among the 15 papers studied, there were three national dailies (Blick, Neue Zürcher Zeitung, Tages-Anzeiger), ten regional dailies (Mittelland Zeitung, Berner Zeitung, Basler Zeitung, Vingtquatre Heures, Tribune de Genève, Le Temps, Le Matin, Corriere del Ticino, La Regione Ticino, Giornale del Popolo) and two Sunday papers (Sonntags-Blick, Le Matin dimanche) from all three large language areas of Switzerland. Altogether, we identified 967 articles with 2708 statements regarding organ donation. While electronic media might exert more influence on the individual, newspapers often give the same information and can report additional details, e.g. giving addresses and contact persons. Our sample included more than half the number of printed newspaper copies in Switzerland following criteria such as “typicality” for the genre and political diversity. Articles were found by searching the Swissdox database for the keywords “organ donation”, “organ transplantation”, and “organ trade” in the German, French and Italian translation. All articles were coded regarding their main topics. The topical areas were x x x x x x
The new national law including legal, political and administrative issues Medical innovations and technical details on organ transplantation Ethical and religious factors Organ trade Experiences of donors and recipients Information campaigns and events
Every article was double-coded using a pre-defined codebook that did not only include codes assigned on the article level, but also seventeen statements that were deemed important with respect to enabling people to make an informed decision about their willingness to donate their organs after their deaths. When a statement was made, the coders did not only note the fact but also its source/author, the evaluation/tendency manifest in the statement and the degree of emotionality with which it was made. The authors of statements were categorized with a checklist, and the 24 categories that resulted give us information on how often representatives of institutions (government, parties, churches, scientists, doctors etc.) voiced their positions in public. For example, the statement “There is a lack of donor organs in Switzerland” could be made by a politician, a physician, a transplant surgeon etc. (different sources), its evaluation could be negative or positive (“at least nature is only tricked rarely”), and it could be clearly marked as an emotional commentary or formulated as a mere fact. The seventeen statements included among others the lack of
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donor organs in Switzerland, conditions to harvest organs, individual’s or relatives’ consent, brain death, information on how to become an organ donor (procedural knowledge), and attitudes towards organ donation (as altruistic, contribution to recipient’s quality of life, in favour or against nature, religion). 3.
Main topics in the media coverage Regarding the coverage of organ donation in the three large language areas of Switzerland, we came to following general picture: 500 articles with 987 statements were published in German language papers, 303 articles with 897 statements were published in French language papers, and 164 articles with 584 statements were published in Ticino (Italian language) papers. Looking at single newspapers regarding articles and statements, one sees significant differences: The Neue Zürcher Zeitung published more articles and statements on organ donation (138 and 396 respectively) that the other dailies and weeklies. There was also intensive coverage in the Tages-Anzeiger (126 and 315 respectively) and Basler Zeitung (112 and 267 respectively). Comparatively rare was reporting in Blick and Matin Dimanche. Both reported even less than their corresponding weekly editions. Comparing the average number of articles per newspaper in the three language areas, it becomes obvious that the Ticino press (54.6) covered the topic much less that the French (74.2) and German press (78.3). It has to be kept in mind, though, that the three Ticino newspaper as well as the French-language press are regional newspapers with much less space to fill than the quality papers Neue Zürcher Zeitung and Tagesanzeiger, which increase the average articles for the German press. The low importance Ticino papers attribute to the topic can also be shown in inter-temporal comparison. We cannot show the single events that triggered coverage but, in general, it was the same legal, political, and administrative events that prompted reporting in all three language areas of Switzerland. Looking at the distribution of articles in time, we can conclude that reporting was not a steady flow of coverage but occurred in waves. Following the popular vote to mandate federal legislation on organ donation on 7 February 1999, reporting diminished in all three language areas. Only new events raised the interest again, such as when the government created the “opt-in” system in November 2000 or when the Zurich University Hospital launched an information campaign on organ donation in June 2002. We concluded that six general topics predominated in the reporting: the new national transplantation law including legal, political and administrative aspects, medical topics, ethical and religious topics, organ trafficking, reports of personal experience and information campaigns and events. Articles were attributed to a topic by headline and by article content. One focus of reporting in all three language areas were legal and
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medical topics, each attracting more than a third of total reporting. As we will show further on, the high number of articles in Ticino on legal and medical topics can be explained by the public debate about “brain death” being the appropriate criterion for person’s passing away. In the German and French press, the high number of individual accounts and experience with organ donation is remarkable. Table 1 Distribution of Statements by Topics Italian
Total
German
French
(n=1227)
(n = 897) (n = 584) (n = 2708)
%
%
%
%
Medical
28.2
24.5
31.5
27.7
Legal
27.0
22.1
36.5
27.4
7.2
17.4
17.5
12.8
Experience
10.2
19.8
3.4
11.9
Religious and Ethical
14.1
2.7
3.1
7.9
Organ Trade
3.4
1.1
3.1
2.6
Other
9.9
12.4
5.0
9.7
100.0
100.0
100.1
100.0
Campaigns and Events
Total
We wanted to address one more aspect of the analysis on the article level: in order to capture the “informative content” of reporting, we created 25 categories to capture the sources of information used. These included Swisstransplant, political parties, the Protestant, Catholic and other churches, transplantation centres and individual transplantation doctors. We did this especially because we wanted to analyse how Swisstransplant is covered in the Swiss press. Swisstransplant, a national foundation, is involved with all activities regarding organ donation and
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transplantation in Switzerland. It coordinates the activities of the six Swiss transplantation centres and is responsible for informing and sensitizing the Swiss public regarding organ donation. Swisstransplant is mentioned differently in the three language areas of Switzerland: the Ticino papers mention Swisstransplant most frequently – more than three times as often as German papers and twice as often as French papers. 4.
The Lack of information about procedural knowledge We can conclude to this point that the Ticino press covered the topic of organ donation less frequently than other Swiss newspapers that it did not mention the topic at all during certain periods, that reporting was triggered by the same events as in the other language areas, and that it referred much more often to Swisstransplant. To test our hypothesis that reporting in Italian language papers could convey more information on how to become an organ donor, we had to differentiate the statements of procedural knowledge regarding organ donation. In order to become an organ donor (and not only having a declarative knowledge about this issue), one should be informed about where to obtain a donor card and of the need of signing the donor card. At minimum, the individual should speak about their own willingness (or unwillingness) with the own relatives. We included therefore the following statements into our codebook in order to see to what extent the mass media inform about those concrete steps towards becoming an organ donor: x x x
One becomes organ donor by signing an organ donor card. One can get an organ donor card from different institutions including Swisstransplant, pharmacists and doctors. One becomes organ donor by declaring one’s will to the next of kin.
When looking at all statements regarding the organ donor card, it becomes obvious that the card itself is only rarely discussed. Some papers hardly mention it at all. The differences in reporting when looking at the different language areas are informative: The three Italian papers with 584 statements mention only six times that one becomes an organ donor by signing an organ donor card. French papers mention this fact 34 times and German ones ninety times.
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Media Treatment of Organ Donation Procedural Knowledge Statements
Number of Statements
30 25
Donor by donor card Donor by telling next of kin Where to get donor card
20 15 10 5
NZ Be Z rn er Ze itu Ba ng sle rZ ei tu ng 24 H eu M r at es in D im Tr an ib un ch e e de G en èv e Le Te m M ps at in Se m ai ne Le N ou Co ve llis rri er te e de lT ici no La G R io eg rn io al ne e de lP op ol o
Bl Ta ick ge sAn ze So ig er nn ta gs M -B itt lic el k la nd -Z ei tu ng
0
Newspaper
Figure 1: Procedural Knowledge It is also remarkable that the frequency of these statements varied significantly by newspaper: the Tages-Anzeiger, Neue Zürcher Zeitung and Basler Zeitung accounted for seventy statements, while the other twelve newspapers added only sixty more. The other two statements regarding procedural knowledge were hardly mentioned at all: where to get a form and that declaring one’s will to the next of kin is just as good as signing a card. Out of 2708 statements, 32 conveyed the former and 23 the latter pieces of information. This fact is highly significant, because it is known from studies in the US that the lack of inner-family communication is perhaps the most important barrier to organ donation12. This innerfamily discussion is almost never mentioned in Swiss German media.
5.
Highlights from a representative survey in Switzerland The lack of procedural information on how to become an organ donor in the media complements findings from a national survey of Swiss adults that we conducted during April and May 2004. The random sample, based on language of interview consisted of 904 German, 324 French, and 281 Italian Swiss. Among other items, the survey highlights the reasons why respondents have not yet signed a donor card. Almost a third of the respondents indicated that they had never thought about signing a donor card, by far the most frequent explanation proffered. The second most frequent reason was that people thought it was too much of an effort to get a card and that they did not have the time. That one was too old for organ donation came in third among the reasons mentioned. In many cases this is likely not to be supported by medical science as there is no general age limit for donating organs. It is clear from these findings that people’s lack of familiarity with the issue of organ donation and their inertia is the main
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Peter J. Schulz
obstacle of any effort to induce more people to sign a donor card (Table 2). Many people also mentioned general reservations they held against organ donation. Ten percent of people not holding a card did not specify a reason, 7.9% indicated medical reasons, and 4.7% reported that their unwillingness to sign a card was based in ethical, moral or religious beliefs. This means that roughly one-fifth of individuals not holding a card think that they have good reasons for their decision. These are people who most likely would have to be convinced by arguments before they would sign a card. It also means that this group is less than half the size as the group who is so far not willing to think about the issue or take the time to get a donor card (Table 2). Some people felt they did not know enough about organ donation. That procedural knowledge was lacking was mentioned by 7.8% of those not holding a card yet, and 5.8 % mentioned a lack of knowledge other than procedural. All in the group who said they had not yet signed a card for lack of knowledge is smaller than the former two groups. But still lack of knowledge is a substantive obstacle to further increasing the number of people demonstrating their willingness to donate their organs by signing a card. Also knowledge may well be easier to improve than inertia and substantive qualms people may hold against organ donation. Table 2: Reasons for not having signed a donor card yet “Why haven’t you signed an organ donor card yet?” (open) 1) Never thought about it 2) Too much effort, no time 3) Respondent thinks s/he is too old 4) Against organ donation for other than ethical, moral, religious, medical reasons) 5) Against organ donation (medical reasons, “too sick”) 6) Lack of procedural knowledge 7) Lack of knowledge (other than procedural) 8) Against organ donation (ethical, moral, religious reasons) 9) Dislike the thought, the commitment 10) Undecided No answer Total
%
N 398 157 135 127
31.4 12.4 10.7 10.0
100
7.9
99 74 59
7.8 5.8 4.7
22 47 49 1267
1.7 3.7 3.9 100.0
The reasons for not having signed a donor card and one’s assessment of what one is likely to do in future are related. Among the
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people who have general qualms about organ donation, be they ethical, moral, religious, medical or whatever else, more than three in five say it is unlikely that they will sign a donor card in the near future, or they even say they are certain they will not do it. On the other hand, those who have not signed a card yet for reasons of inertia (never thought about it, too much effort) or lack of knowledge say that they are likely or certain to sign a card in the near future, or they indicate at least they will probably do it. That is to say that those who made general judgements against organ donation are not likely to sign a card, while those who have not really considered the issue or think they do not know enough still expect to sign a donor card in the near future (Table 3). Table 3: Relationship between reasons for not having signed a donor card and expectation of signing in future “Will you sign an organ donation card in the near future?”
Have not signed a card yet for reasons of … Inertia General qualms Lack of about organ knowledge (n = 555) donation (n = 173) % (n = 286) % %
Surely, likely to sign a donor card in future Maybe Unlikely, will surely not sign Don’t know, no answer Total
37.3
15.0
42.8
38.0 19.5
21.0 61.5
37.0 17.9
5.2 100.0
2.4 99.9
2.3 100.0
Inertia: Items 1) and 2) from Table 2. General qualms: Items 4), 5), and 8). Lack of knowledge: Items 6) and 7) Increasing procedural knowledge on how to obtain a donor card thus seems to be promising. Looking at the sum of statements regarding procedural knowledge in the press, there were 10 in Italian papers, 123 in German and 52 in French. To set these figures in proportion: the fact that the donor’s consent is important is mentioned almost twice as often (217 times) as the procedural knowledge in German newspaper. And the fact that the relatives are frequently asked for their consent is mentioned more often (163 times) that the option of signing an organ donor card. More prominent in the coverage of organ donation was the discussion of whether the brain death of a person constitutes death or whether it is merely the last phase of the dying process. The discussion was featured by almost all Swiss newspapers, and no other discussion was as
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diverse and intense. Differentiating the language areas, we must conclude that brain death was discussed much less in French papers and much more in German and Italian. In Ticino newspapers, it was one of the most frequently discussed topics, and opponents of the “brain death concept” were give ample space to voice their concerns. The hypothesis that reporting in Ticino papers was less controversial must therefore be rejected. Who, then, were the statement authors? The majority of statements were authored by journalists. They made almost two thirds of statements (64%). ‘Experts’ were the second largest group and they contributed about 18% of statements. In third place were politicians, with 8.2% of statements. Only a few politicians referred to their parties’ official positions or mentioned their parties at all. Looking at individual papers, it becomes obvious that experts were frequently featured by Neue Zürcher Zeitung (31%), Basler Zeitung (22%) and Le Temps (20%), and that readers contributed significantly more statements in Blick (14%) and Tages-Anzeiger (15%). Representatives of churches were hardly quoted at all with the exception of the Giornale di Popolo from Ticino. In fact, the Ticino reporting drew heavily on news agencies (Corriere del Ticino 54%, La Regione 59% und Giornale del Popolo 30%). Only the latter gave significant room for editorials and guests, the others concentrated on news coverage only. 6.
Conclusion We started our analysis by hypothesizing that the different donor rates for German, French and Italian speaking Swiss are at least in part a result of different media coverage. This hypothesis was supported by the fact that newspapers, magazines and television are most frequently recalled as sources of information on organ donation, as compared with other sources such as interpersonal communication. In the light of our present analysis, however, this hypothesis can be rejected: organ donation is featured less often in Ticino papers than in others, and if it is covered, it conveys less information important for procedural knowledge. The fact that Swisstransplant is mentioned more often can hardly change this result. In Ticino, reporting on organ donation is in fact more controversial than in other papers, and this is especially true for the debate of brain death. Our data on the tendency of statements – though not discussed in this article – confirm these findings. Altogether it is striking that the media coverage of organ donation lacks information on procedural knowledge. The information offered by the media was frequently dominated by the current events that triggered reporting in the first place. This result is problematic, because although almost 5% of the statements address the fact that one becomes an organ donor by signing an organ donor card (although concentrated in Tages-Anzeiger, Neue Zürcher Zeitung and Basler Zeitung), there is hardly any information on where to get such a card and that one can just as well
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declare one’s will to one’s next of kin. In Switzerland, the relatives are always asked whether the deceased would have wanted to donate organs. The shortcomings of newspapers with regard to informing their readers about how to get a donor card is all the more deplorable because lack of procedural knowledge is among the reasons people name for not yet having signed a card. And the people who feel they do not know enough are not unwilling, in principle, to sign a donor card. In light of these results regular information on how to get a card seems to be something newspapers could do to increase the number of people carrying an organ donation card. However, the framing of the subject of organ donation in the newspapers as a medical or legal issue seems to be standing in the way of such simple matters as how to obtain the card. Moreover, speaking mostly of medical and legal matters, the newspaper take a perspective different from that of citizens who may be willing to donate their organs, but just do not know what to do, where to get a donor card, and what the card implies. The newspapers’ framing may neither be helpful to overcome people’s inertia in dealing with the issue. For future information campaigns it seems both necessary and promising to try to get people to think about the issue to overcome their inertia, and to relate the basic knowledge on how to declare one’s willingness to donate one’s organs, that is say use all occasions to inform people about how and where to get the donor card. The rejection of our starting hypothesis does not weaken the connection between newspaper reporting and public attitudes towards organ donation. We must, however, find support by analyzing additional information and impact channels. A link between reporting and attitudes can still be expected because the results from our survey clearly show that the (declarative) knowledge on organ donation is better in German and French speaking Switzerland than in Ticino. It remains to be shown whether this can be explained by the complete and continuous reporting, especially in the three national dailies.
Notes 1 Swisstransplant, Rapport Annuel/ Jahresbericht 2004. (Geneva: Swisstransplant, 2005). 2 Ibid. 3 Gallup Organization. The American public’s attitudes toward organ donation and transplantation. (Boston: The Partnership for Organ Donation, 1993). Raymond L. Horton and Patricia J. Horton, “Knowledge regarding organ donation: Identifying and overcoming barriers to organ donation,” Social Science & Medicine 31 (1990): 791800. Raymond L. Horton and Patricia J. Horton, “A model of willingness to become a potential organ donor,” Social Science & Medicine 33
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(1991): 1037-1051. Carmen M. Radecki and James Jaccard, “Signing an organ donation letter: The prediction of behavior from behavioral intentions,” Journal of Applied Social Psychology 29 (1999): 18331853. Karl-Heinz Schulz et al., “Predictors of intention to donate organs: An empirical model,” Transplantation Proceedings 32 (2000), 205-209. 4 Gallup, 1993. Susan E. Morgan and Jenny K. Miller, “Communicating About Gifts of Life: The Effect of Knowledge, Attitudes, and Altruism on Behavior and Behavioral Intentions Regarding Organ Donation,” Journal of Applied Communication Research 30 (2002): 163-178. 5 Peter J. Schulz et al, “Organspende in der Schweiz”, HCC Lab Working Paper, No. 1, 2004. See also Peter J. Schulz et al., “More than Nation and Knowledge: Cultural Micro-Diversity and Organ Donation in Switzerland” (Patient, Education & Counselling, in print). 6 Susan E. Morgan et al., “Family discussions about organ donation: how the media influences opinions about donation decisions,” Clinical Transplantation 19 (2005): 674–682. 7 Catalina Conesa et al., “Influence of Different Sources of Information on Attitude Toward Organ Donation: A Factor Analysis,” Transplantation Proceedings 36 (2004): 1245–1248. 8 José Martínez et al., “Percepción social de la donación en Espana tras la década de los transplantes,” Nefrologia 21 (2001): 45. Antonio Peréz et al., “Factores sociales y psicológicos que influyen en la donación de órganos,” Psicothema 5 (1993): 241. 9 Rafael Matesanz, “Organ Donation, Transplantation, and Mass Media,” Transplantation Proceedings 35 (2002): 987–989. 10 Gail Moloney and Iain Walker, “Messiahs, Pariahs, and Donors: The development of social representations of organ transplant,” Journal for the Theory of Social Behaviour 30 (2000): 203-228. Gail Moloney and Iain Walker, “Talking about transplants: Social representations and the dialectical, dilemmatic nature of organ donation and transplantation,” British Journal of Social Psychology 41 (2002): 299-320. 11 Schulz et al., 2004, 44. 12 Susan Morgan and Jenny Miller, “Beyond the Organ Donor Card: The Effect of knowledge, attitudes, and values on willingness to communicate about organ donation to family members,” Health Communication 14 (2001): 121-134.
Bibliography Conesa, Catalina, Rios, Antonio, Ramirez, Pablo, Canteras, Manuel, Rodriguez, Pablo, Canteras, Marìa del Mar and Parrilla, Paricio, “Influence of Different Sources of Information on Attitude Toward Organ
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Donation: A Factor Analysis.” Transplantation Proceedings 36 (2004): 1245–1248. Gallup Organization. The American public’s attitudes toward organ donation and transplantation. Boston: The Partnership for Organ Donation, 1993. Horton, Raymond L. and Horton, Patricia J. “Knowledge regarding organ donation: Identifying and overcoming barriers to organ donation.” Social Science & Medicine 31 (1990): 791-800. Horton, Raymond L. and Horton, Patricia J. “A model of willingness to become a potential organ donor.” Social Science & Medicine 33 (1991): 1037-1051. Martínez, José M., López, Jorge S. and Martín, Antonio. “Percepción social de la donación en Espana tras la década de los transplantes.” Nefrologia 21 (2001): 45. Matesanz, Rafael. “Organ Donation, Transplantation, and Mass Media.” Transplantation Proceedings 35 (2002): 987–989. Moloney, Gail and Walker, Iain. “Talking about transplants: Social representations and the dialectical, dilemmatic nature of organ donation and transplantation.” British Journal of Social Psychology 41 (2002): 299-320. Moloney, Gail and Walker, Iain. “Messiahs, Pariahs, and Donors: The development of social representations of organ transplant.” Journal for the Theory of Social Behaviour 30 (2000): 203-228. Morgan, Susan E. and Miller, Jenny K. “Communicating About Gifts of Life: The Effect of Knowledge, Attitudes, and Altruism on Behavior and Behavioral Intentions Regarding Organ Donation.” Journal of Applied Communication Research 30 (2002): 163-178. Morgan, Susan E. and Miller, Jenny K. “Beyond the Organ Donor Card: The Effect of knowledge, attitudes, and values on willingness to communicate about organ donation to family members.” Health Communication 14 (2001): 121-134. Morgan, Susan E., Harrison, Tyler R., Long, Shawn D., Afifi, Walid A., Stephenson, Michael S. and Reichert, Tom. “Family discussions about organ donation: how the media influences opinions about donation decisions.” Clinical Transplantation 19 (2005): 674–682.
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Pérez, Antonio, M., Domínguez Roldán, José M. and Murillo Cabezas, Francisco. “Factores sociales y psicológicos que influyen en la donación de órganos.” Psicothema 5 (1993): 241. Radecki, Carmen M. and Jaccard, James. “Signing an organ donation letter: The prediction of behavior from behavioral intentions.” Journal of Applied Social Psychology 29 (1999): 1833-1853. Radecki, Carmen M. and Jaccard, James. “Psychological aspects of organ donation: A critical review and synthesis of individual and next-of-kin donation decisions.” Health Psychology 16 (1997): 183-195. Schulz, Karl-Heinz, Meier, Dorothea, Clausen, Claus, Kuhlencordt, Rainer and Rogiers, Xavier. “Predictors of intention to donate organs: An empirical model.” Transplantation Proceedings 32 (2000): 64-65. Schulz, Peter J., Haes, Joachim and Tomada, Angelo. “Organspende in der Schweiz.” HCC Lab Working Paper, No. 1, 2004. Schulz, Peter J., Nakamoto, Kent, Brinberg, David and Haes, Joachim “More than Nation and Knowledge: Cultural Micro-Diversity and Organ Donation in Switzerland.” Patient, Education & Counselling (in print).
Note on Contributor Peter J. Schulz (
[email protected]) is Professor for Semiotics and Health Communication at the School of Communication Sciences and director of the Health Care Communication Laboratory (www.hcclab.org), University of Lugano.
Acknowledgement The research presented here was supported by a grant from the National Research Programme NRP 46 “Implants and Transplants” (Swiss National Science Foundation) for our study on “Raising awareness of organ donation”.
