(Peter L Twohig, Vera Kalitzkus) Social Studies of

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
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
29
Part 2 Social and Cultural Context(s)

Desirability and Its Discontents: Young Peoples Responses
to Media Images of Health, Beauty and Physical Perfection
Joe Grixti
49
Writing Size Zero: Figuring Anorexia in Contemporary

World Literatures
Isabelle Meuret
75
Devils, Serpents, Zebras: Metaphors of Illness in

Contemporary Swedish Literature on Eating Disorders
Katarina Bernhardsson
95
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
115
129
143
Part 4 Representing Pain: Interdisciplinary Perspectives

Perceptions of Pain in Contemporary Zimbabwean
Literature: Personal Public Narratives in Yvonne Veras
The Stone Virgins
Zo Norridge
Metaphors of Injury: Women Make Sense of Pelvic Pain
Victoria M. Grace and Sara MacBride-Stewart
159
175
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
211
Media Treatment of Organ Donation: A Case Study in

Switzerland
Peter J. Schulz
229
Introduction
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 womens 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
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,
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
correct3 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. Zo
Norridge offers insights into the suffering of Zimbabwean women through
the narratives of pain of two sisters in Yvonne Veras 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
Introduction
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
individuals 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, da die
Bewutheit sich von selbst zurckhlt, so da Gesundheit sich verbirgt.
Trotz aller Verborgenheit kommt sie aber in einer Art Wohlgefhl
zutage, und mehr noch darin, dass wir vor lauter Wohlgefhl
unternehmungsfreudig, erkenntnisoffen und selbstvergessen sind und
selbst Strapazen und Anstrengungen kaum spren das ist Gesundheit.
Hans-Georg Gadamer, ber 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.
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. ber 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.
Introduction
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 Marys 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 adult1
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
10
Shifting Views of Self
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, Genevieves 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 Genevieves 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
Genevieves 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
Amy Rutstein-Riley
11
impacted Genevieves 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,
Genevieves 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 dont think I had
been to a gynaecologist before. Hes an old man, he
might have been in his 70s, 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 wasnt 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 didnt 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 cant 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
doesnt say anything, doesnt 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 havent really had any exposure, I've only had
one sexual partner and he was a virgin. So hes like,
you have herpes, or it looks like herpes to me, thats
what he said. I cant 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, hes like I'm not
interested in your sexual history. Hes got the
camera on me so that I can see my vagina like in full
screen. The nurse is standing there; she doesnt even
hold my hand or anything. Not that thats her job or
whatever, I'm just hysterical. Hes got the speculum
12

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, were going
to give you a blood test to test you for herpes. And
I'm crying the whole time.
I dont even know what he said was the reason for the
chronic vulvar inflammation. That didnt seem to
affect him, thats the reason I was there, but now hes
decided I have herpes. So they lead me through the
waiting room, crying hysterically. So my boyfriends
sitting there and he sees me and I'm crying and hes
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 Genevieves

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.
Genevieves 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 specialists 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.
Amy Rutstein-Riley
13
Despite the power of this negative encounter, Genevieves

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
14
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 shes
like, Im just calling to let you know that I need to
speak with your about your Pap smear. Thats it. No
details, no like, This isnt an emergency like you
know, I need to speak with you about your Pap
smear. So I am like freaking out. Im like, Oh, my
God; Ive never had anything wrong with a Pap
smear before. I call her back, office hours end, and
then theyre like, She wont 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 doesnt 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
Amy Rutstein-Riley
15
appointment with like an OB/GYN [obstetrician and

gynaecologist], and just like left me with like this
moderate dysplasia word in my head. So shes like
fired, like Im never going to see her again. Like I
cant believe I dont 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] thats been like
sitting around for a year and a half that I dont know
about? Like it could be so many things.
Mollys 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
Mollys 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 Mollys 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
16

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
didnt 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 wouldnt 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 wasnt 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.
Mollys 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
Amy Rutstein-Riley
17
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. Mollys 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.
Mollys 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 others
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
18
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. Mollys 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.
Amy Rutstein-Riley
19
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, Emmas
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 wouldnt 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 thats like what I
had and that somebody said, okay, you know, this is
what ... and I dont know if I necessarily believe it
now, and I have a hard time believing that thats what
I have. But I think knowing that thats what I have
helped me because I realized like okay, I'm doing this
because I'm having a manic phase right now. And
20

when you can assign you know, like a name to it, and
realize what it is, the behaviour, I think you really ...
you know, youre 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 thats helped, is
knowing that thats what it is.
This encounter serves as a dividing line in Emmas understanding

of herself. Prior to these health care encounters, Emmas 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.
Emmas 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
dont know if I necessarily believe it now, and I have a hard time
believing that thats 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.
Emmas 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 thats what it is. Its basically a label. But
Amy Rutstein-Riley
21
if you dont 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 ... thats 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 theyre 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 thats 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. Emmas 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 Emmas 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 Emmas 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.
22
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. Emmas 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.
Its hard, because its 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 dont 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 theres
nothing wrong with me. If I have a good maybe like
Amy Rutstein-Riley
23
two or three weeks after I stop taking my medicine

I'm fine. Like everythings fine. And then all of a
sudden I get depressed. And then everythings 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 its 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 its not a concrete diagnosis.
Whereas like usually when you go into the doctors
youre looking for the concrete diagnosis. And most
of them, at least they come across as being concrete
diagnoses, but in mental illness its 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
ones 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
24
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 Emmas 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 held9
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
womens health care, as each participant in this study identified herself as
Amy Rutstein-Riley
25
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 Womens Health. In Reframing Womens
Health - Multidisciplinary Research and Practice edited by Alice Dan,
67-78, (Thousand Oaks: Sage Publications, 1994).
26
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 Womens Health
Concerns: Revealing Paradox. Health Care for Women International
22 (2001): 633-647.
8 Miller & Stiver.
9 Debbie Kralik, Maria Brown & Tina Koch, Womens 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 Womens 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.
Amy Rutstein-Riley
27
Bibliography
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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 Womens Health
Concerns: Revealing Paradox. Health Care for Women International 22
(2001): 633-647.
Candib, Lucy M. Self-In-Relation Theory: Implications for Womens
Health. In Reframing Womens 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.
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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. Womens Experiences of
Being Diagnosed With a Long-Term Illness. Journal of Advanced
Nursing 33 (2001): 594-602.
28
Malterud, Kristi. Strategies for empowering womens 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).
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Interview. Annals of Internal Medicine 134 (2001):1079-1085.
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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, womens 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 essays 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
30
Cancer and the Idea of the Self
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; its 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 philosophys
central features and crucially important methods. And so, from Cancer
And The Idea Of The Self,4 this is how it went.
Marlene Benjamin
2.
31
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 doesnt 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
prospects 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 wont confound the data; that I wont 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
32
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 wasnt 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 anyones philosophical tool-of-choice for thinking
about the relation between objective and subjective perspectives on the
same thing. It certainly wasnt 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 cant 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 its 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 cant often get very
close to. The first problem, then, is how to get close enough to the
Marlene Benjamin
33
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
cant 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
34
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
doctors 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 patients 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
Marlene Benjamin
35
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 doctors 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 hospitals
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
36
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 Decembers 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 dont 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, its 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,
Marlene Benjamin
37
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 doesnt 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 hasnt changed. These, he says, are
good signs.
I know this is true, but it doesnt do much for my headache.
The truth isnt 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 cant 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 headaches
original genesis is a dubious gift. Ive 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, theres 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 ones 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 cant. I think this is
because there is something absent in the Reductionist account of what
38
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.
Marlene Benjamin
39
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 Cant 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
40
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 cant 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 cant 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, isnt
Marlene Benjamin
41
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 Cavells
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 Loves 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
42
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 womans 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 mothers death. In 1995, I wrote an essay about my
own mothers dying and death in 1993 (with this article, part of a book
in progress), and used some of Nussbaums 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,
Marlene Benjamin
43
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 Cavells 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 proddings 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 disciplines? 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 philosophys
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
44
(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 cant 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. Loves 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
Marlene Benjamin
45
Young, Iris Marion. Pregnant Embodiment, in Body & Flesh. Edited by

Donn Welton. Oxford: Blackwell Publishers, 1998.
Note on Contributor
Marlene Benjamins interdisciplinary interests date from her
undergraduate work in the Great Books Program at St. Johns College.
Her Ph.D. is from Brandeis University. She has taught at Clark,
UMASS/Boston, Harvard Universitys 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 Peoples 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
peoples 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 peoples 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 peoples
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
50
Desirability and Its Discontents
in process, and always constituted within, not outside, representation, and

hence (in Judith Butlers terms) performatively constituted by the very
expressions that are said to be its results.2
This chapter explores how young peoples 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 Maltas 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 peoples 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 Maltas 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 Maltas 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.
Joe Grixti
51
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
52
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 peoples 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. Theyre not
supermodel types, and theyre not unrealistically
thin either. I believe that an advert should portray an
ideal situation, so ideally youre healthy, youve got a
good physique, even if youre 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 youre 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 wouldnt use a chubby or fat
person in an advertising campaign not because its
not healthy, I wouldnt do that because its
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
Joe Grixti
53
were attractive, very attractive, but nothing that

intimidated, nothing that made you feel: Oh my
God, I cant go next to that crowd of people because
Im 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 periods preference
for body shapes which would today be popularly considered unattractive
54
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 womens 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 womens 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 ones guilty (diet-induced?)
desires for food.10 This position has been extensively argued in relation to
Joe Grixti
55
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 [womens]
experience and potential nor combat the ongoing inequities, abuses and
self-violations which are the familiar everyday business of womens
lives.11
Content analyses of womens 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 Birds 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 bodies16
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
56
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 mans 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 peoples 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 medias 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 Societys 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
Joe Grixti
57
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 Maltas National Office of
Statistics 2003 Lifestyle Survey, for instance, nearly a quarter of the
islands 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: Ill help you, but
dont start on about rights! They feel threatened.
Same as why many men dont 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 dont 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 dont get on
with your parents, forget it because youre 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 cant understand why were not happy when
were regarded as heroes. But I admire you! they
say. Why arent you happy? And you keep telling
them: because its not real, its not the way I live my
58

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 thats
what youve got to look at, you know, theres 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. Lets 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:
Its terrible when youre 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 youre a
freak, and why are you alive? and if you are alive,
why is your mind not messed as well so you dont
know whats happening to you? And every time I
tried to speak about how I felt, people would say:
Joe Grixti
59
Oh, youve got nothing to worry about. Youve got

nothing to be unhappy about! What they were
saying was Please shut up, dont talk about it. Its
too painful. So you shut up ... But then its difficult
because you dont 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 Steeles 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 cant I be like
them? If you look around you, no ones that perfect!
Maybe there are people who look good and they
dont look bad, you know, but no ones extremely
perfect! Its only in advertising that they show
someone perfect so that youll want to be like them!
They make you angry, you know, actually the
pressure starts getting to you. Its 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
60
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 lets be realistic. Do we want
to see fat slobs on TV, or people without hair, or
something of the sort? And its true. The media do
affect us to want to look good or to eat better food,
and if it doesnt get excessive, its good, because
after all we feel good, and if were what we want to
be, were OK with ourselves.
Feeling good about oneself in this context presumably means not being a
fat slob and not losing ones 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 theyre too
fat and that they wish they were as slim as me or
whatever!
I was frequently told of young womens 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 shes 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
Joe Grixti
61
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 cant. Like, my hips are huge; I
still want them to be smaller, but I went through a
phase when I didnt eat. Like, you lose three or four
kilos in a week, but you put them on again, so its a
waste! But I had a friend, shes tall, very thin, and
she still wasnt 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 womens 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 McDonalds 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 Maltas 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
Maltas 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 Surveys
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
62
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:
Im rather a perfectionist, in what I wear, how I look
and everything. So lets face it, if youre a
perfectionist, everything has to be perfect! Its kind
of like, you wake up in the morning and youre like,
you know, you look in the mirror and its like, Fuck,
Im hot here, you know ... Im 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, Im like a new
Greek god, and the next thing I know Im at a party
and my tops off and Im under the strobe dancing
my head off and the next thing I know Im 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, Im a bit fat and so on,
but not too much. OK, if you see a pretty girl, its all
right, because its a girl. But if you see a young man,
then you say, Why am I not like him? sort of.
Personally, thats what I say. It doesnt get me down
that much, however, because then I turn it around,
and say, Ive got a lovely character; at least for me
its very good. But still
Joe Grixti
63
In contrast to Stephens half-hidden regret, nineteen year old Pauls

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
dont care to achieve. Not that I dont want it if it
comes, welcome! But Im not ready to work for it
cause I dont 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
peoples 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 mens 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
mens 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 Ive ever met, however thin she was,
always said that shes too fat! Some boys I know who
64

are fat often get depressed because of their body and
do everything to lose weight, not eating, etc. But its
much worse with girls. Girls go for the perfect shape.
The perfect shape la American style: perfect shape
meaning a Size C cup basically and a small rounded
ass. Either one or the other: backside or What a
girl! if you see what I mean. For guys as such, they
want to be well built, so their aim is to have a sixpack, muscles, and to be tall taller than the girls
they want to date.
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 thats 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, its OK now
Im 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 dont 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 dont know what its like
to have to lose weight. You dont know what a
feeling it is to go from a size 34 to a size 29 waist.
Joe Grixti
65
You dont know that feeling of achievement. I passed

all the exams Ive 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 Ive 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 dont go together. I mean, Im
one of those people who is very body conscious the
type who goes: Oh I want that body! Im very
stereotypical in that sense! Very much, you know, Oh
my, God! I have to have that! Im very much that
kind of person!
8.
Conclusion: Globalising Desire

The growth of global commercial media has created a situation
where young peoples 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
66
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 were not going to take much notice; were 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 dont fret about their weight or looks. This attitude
may well be related to still dominant patriarchal expectations among
Maltas 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 Maltas
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 Maltas 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
peoples 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 Womens 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
Childrens 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
Joe Grixti
67
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, Medias Impact on
Adolescents Body Dissatisfaction, in Sexual Teens, Sexual Media:
Investigating Medias 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, Macleans, 14 August 2000, 37. See
also Alyson Kay Spurgas, Body Image and Cultural Background,
Sociological Inquiry 75 (2005): 297316.
10 Levine, 84; see also J. Kevin Thompson and Leslie J. Heinberg, The
Medias Influence on Body Image Disturbance and Eating Disorders,
Journal of Social Issues 55 (1999): 339353.
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
68
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 Womens 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). <http://www.media-disability.org>.
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). <http://www.exploremalta.com/
health/healthprom.asp?id=3207>
Joe Grixti
69
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 Martins 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: Mens 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.
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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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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: Mens 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
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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.
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<http://www.exploremalta.com/health/ healthprom.asp?id=3207> (29 May

2005).
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Adolescents Body Dissatisfaction. In Sexual Teens, Sexual Media:
Investigating Medias 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 Childrens
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
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Nelson, Jack A. The Disabled, the Media and the Information Age.
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Nixon, Sean. Hard Looks: Masculinities, Spectatorship and Contemporary
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Satisfaction: The Role of Gender and Size. European Eating Disorder
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Olivardia, Roberto. Body Image Obsession in Men. Healthy Weight
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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
Womens 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 Womens Magazines. Psychother
Psychosom 70 (2001): 189-192.
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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
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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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73
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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 Medias Influence on
Body Image Disturbance and Eating Disorders. Journal of Social Issues
55 (1999): 339353.
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.
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What It Means to Be a Girl. In Sexual Teens, Sexual Media: Investigating
Medias 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.
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Image in Taiwan versus the West: Yanggang Zhiqi Meets the Adonis
Complex. American Journal of Psychiatry 162 (2005): 263-269.
74
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 ones 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 sicle 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.
76
Writing Size Zero
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 relatives
Isabelle Meuret
77
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 individuals 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 hystrique by Charles Lasgue. 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
78
Writing Size Zero
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, Brumbergs 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
Matre, I prefer to cut the term to the bone and to relieve it from any
oversimplification or improper interpretation. Matre 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
Isabelle Meuret
79
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 Gubars Madwoman in the Attic
(1979), Donalle Fregas Speaking in Hunger (1998), Sarah Sceatss Food,
Consumption and the Body in Contemporary Womens Fiction (2000) are
good illustrations of this. These books deal with starving authors ranging
from Emily Bront 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 Flix Guattari said about Kafkas 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 Woolfs
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 Andr Gide,
Lord Byron, and Franz Kafka. Gide confessed in his journal that he
80
Writing Size Zero
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 arts 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 mothers 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 Colebrooks 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
Isabelle Meuret
81
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 others 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 criture 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, Dangarembgas 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.
82
Writing Size Zero
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 Places 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
Isabelle Meuret
83
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 es
were jumping
up and down
before her eyes
every minute of
the day43
We notice that Lucys 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
84
Writing Size Zero
Places text, the narrator clearly suffers from a depersonalisation which

leads to a schizoid fragmentation. Lucys food and word phobias are also
concurrent with her hearing voices, bouts of madness and delusions:
The food wouldnt 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 Wrbel 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 Wrbel notes, neologisms and free punctuation characterise
schizophrenic language. Places reshaping and reformatting of English is a
strategy to suit her anorexic experience. Indeed, Wrbel 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, Places 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
Isabelle Meuret
85
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 anorexics identity is marginalized.49 Or, to put it
differently, Places 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 Atlans allegory from France (The
Passersby, 1988), Candia McWilliams thriller from Scotland (A Little
Stranger, 1989), Jenefer Shutes autobiography from Britain (Life-Size,
1992), Shelley Davidows tale from South Africa (All Annas Children,
1996), Erin Soross autothanatography from Canada (Giving Death,
1998), or Marya Hornbachers 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 Davidows 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-
86
Writing Size Zero
storyteller. In postcolonial studies, and more precisely when she addresses

transculturation, Franoise 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 mtissage, to use another of Lionnets terms,
is in keeping with the latest developments in ethnopsychiatry. Indeed,
researchers like Tobie Nathan, Isabelle Stengers, and Philippe Andra 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.
Isabelle Meuret
87
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, velyne 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 Matre, Anorexies religieuses, anorexies mentales: essai de
psychanalyse sociohistorique (Paris: ditions 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
88
Writing Size Zero
Flix 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 Andr Gide, So Be It; or, The Chips Are Down, trans. Justin OBrien
(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. Authors 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 Franoise 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. Authors 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.
Isabelle Meuret
89
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 Wrbel, Language and Schizophrenia (Amsterdam and
Philadelphia: John Benjamin Publishing Company, 1990), 4.
47 Place, 3. My emphasis.
48 Wrbel, 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 Franoise 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 schizophrnie ?
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.
90
Writing Size Zero
__________. 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 Littraires 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 Womens Press, 1988).
Davidow, Shelley. All Annas Children. Cape Town: Tafelberg, 1996.
Deleuze, Gilles, and Guattari, Flix. 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.
and
Gide, Andr. So Be It; or, The Chips Are Down, trans. Justin OBrien.
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, Franoise. 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.
Matre, Jacques. Anorexies religieuses, anorexies mentales: essai de
psychanalyse sociohistorique. Paris: ditions 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 schizophrnie ?
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
Womens 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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93
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
OReilly. 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:
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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 LAnorexie cratrice (Paris: Klincksieck, 2006).
Devils, Serpents, Zebras:

Metaphors of Illness in Contemporary Swedish Literature
on Eating Disorders
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 Spke (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
96
Devils, Serpents, Zebras
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 dbut 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 girls 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
97
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 ngel (Angel with Clipped Wings, 2004), where Berny
Plsson who after the publication of her book turned into a dark teenage
idol writes about her life as a self-mutilating schizophrenic, and Gertrud
Hellbrands 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 mnblomma (Like A Moon Flower, 2000) writes:
98

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. Its 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 pne kroppen. Om kjnnssymbolikk 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
99
female bodys 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 womens 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 Sontags 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 Sontags 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 societys 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
100
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 Lottas 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
101
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 protagonists perceptions, deluding her to
interpret things incorrectly.
The most prominent part of all these metaphors is the illnesss
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 protagonists ally (her only friend) and as an
intruder. Evelyn in Evelyn Spke 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 peoples monsters grow larger. Ana in Trsta 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 t nyss! (No Thanks, Ive 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 fr jag ta (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
102
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 territorys 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 fddes 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 Vrfrost (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-wolfs 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
childrens 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 Solheims words,
the open body.
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6.
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 Nr mrkret 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 bodys 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
105
described as swelling, is shrinking and almost non-existent, in Camillas

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
peoples 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 womans
perspective, acknowledging the right of her point of view. There are many
things worth considering about the narrator, for example the distance in
106
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 strre blev ormen
inombords, den tog ver mig, den tog ver 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 patients 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 t nyss! [No
Thanks, Ive Just Eaten!] (Stockholm: Wahlstrm & Widstrand, 1995)
and Ana Martinez: Trsta mig aldrig med en karamell [Never Comfort
Me With a Sweet] (Stockholm: Ekerlids frlag, 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,
107
signalling the comparatively large distance of the adult women to the

problems.
5 Two authors, Anna Johansson and Anna Jrgensdotter, 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 frgor till Anna Johansson, Aftonbladet, 12 January
2002. Anna Jrgensdotter 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 frlskelse, Kvllsposten, 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 Plsson, Vingkippt ngel [Angel with Clipped Wings] (Stockholm:
Forum, 2004). Gertrud Hellbrand, Vinthunden [The Greyhound]
(Stockholm: Wahlstrm & 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 n att du [] ska komma i din stora
brummande bil som prinsen p sin hst och rdda den stackars
prinsessan frn det otcka monstret. [] Perfekt som i en saga. Nstan
s perfekt r det. / Synd bara att jag rkar vara bde prinsessan och
monstret. Ia Jonsson, Som en mnblomma [Like a Moon Flower]
(Viken: Replik, 2000), 81. Sofias statement that she is a princess turned
into a werewolf points in the same direction. Sofia kerman,
Zebraflickan [The Zebra Girl] (Vsters: Frfattarhuset, 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
Franks case cancer). Arthur W. Frank, At the Will of the Body:
108
Reflections on Illness (Boston and New York: Houghton Mifflin, 2002),

56.
13 kvinners anatomiske mer-penhet. Jorun Solheim, Den pne
kroppen. Om kjnnssymbolikk i moderne kultur (The Open Body.
Symbolism of Gender in Modern Culture, Oslo: Pax forlag, 1998), 69.
14 Mat som kan spises, ker som blir sdd, kropp som kan invaderes.
Ibid, 47.
15 I det hele tatt synes krigsmetaforer vre 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 fr att inte lta den verkliga vrlden ta plats i mig. Katarina
Samuelson, Ludenben [Hairylegs] (Lund: Bokfrlaget Augusti, 2005),
69.
20 See, for example, Olson, 82.
21 en galen flicka. Karoline in Anna Johansson, Vissa fddes perfekta
och andra som jag [Some Were Born Perfect, Others Like Me]
(Stockholm: Norstedts, 2002), 112.
22 Trassel, in Lina Strandberg, Nr mrkret kom [When Darkness
Came] (Vsters: Frfattarhuset, 2000).
23 Hur jag n gr s frsvinner jag. Maria Hede, Evelyn Spke [Evelyn
Ghost] (Stockholm: Bonniers, 1987), 121.
24 Exorcisterna skulle frst mig bttre n alla medicinmn [].
Martinez, 49.
25 Snart skulle kalorierna n tarmarna och bli till parasiter som fr mig
att svlla upp. Camilla Dahlberg, I himlen fr jag ta [I May Eat in
Heaven] (Skellefte: Ord & Visor frlag, 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.
109
27 See Olson, 24.

28 oskadliggra maten genom att hlla diskmedel p den. Caroline
Lagercrantz, Malva [Mallow] (Stockholm: Forum, 2004), 125.

29 klibba fast, blir en hinna av fett under huden. Anna Ehn, Vrfrost
[Spring frost] (Stockholm: Norstedts, 1995), 147.

30 vilddjur gr brsrkagng i magen. Johansson, 91.
31 frenetiskt tuggande svljande. Ibid, 174.
32 Einar Norelius, Petter och hans fyra getter [Petter and His Four Goats]
(Stockholm: En bok fr alla, 1996), originally published 1953.

33 Olson, 49.
34 kvinneligheten [er] en byrde, et k. Den er tung og jordbunden, en
materiell treghet, som fyller opp og binder. Hun vil vre fri og
selvstendig, hvilket betyr ukvinnelig. Solheim, 115.
35 ngonstans drinne under allt fett finns sknheten. Lagercrantz, 21.
36 Tnk att fly frn den hr vidriga kokongen som folk kallar fr kropp.
Ibid, 19.
37 Det r en fettklump som ligger p britsen. Strandberg, 43.
38 ofrnkomligt min, aldrig jag men min. Johansson, 164.
39 Jag vill kliva ur min kropp, stlla mig bredvid den och stolt sga:
Shr sg jag ut frut, s hr sg jag ut INNAN. Hede, 84.
40 sjukdomssklden. kerman, 86.
41 Hela jag r nu ett bottenlst hl som mste fyllas, mste fyllas, mste
fyllas. Martinez, 81.
42 Utan deras blickar ver min kropp hade jag ingenting som jag kunde
kalla jag. Luft snarare n spke. Samuelson, 153.
43 Min nya identitet blev att jag hade varit sjuk men att jag slogs fr att
blir frisk. kerman, 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 narratives 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
kerman, Sofia. Zebraflickan [The Zebra Girl]. Vsters: Frfattarhuset,
2004.
Brundin, Anna-Lena. Nej tack, jag t nyss! [No Thanks, Ive Just Eaten!].
Stockholm: Wahlstrm & Widstrand, 1995.
110
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. Jrgen Herlofson).
Ormen och jag [The Serpent and I]. Stockholm: Atlantis, 1990.
Dahlberg, Camilla. I himlen fr jag ta [I May Eat in Heaven]. Skellefte:
Ord & Visor frlag, 2000.
Ehn, Anna. Vrfrost [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 Spke [Evelyn Ghost]. Stockholm: Bonniers, 1987.
Hellbrand Gertrud. Vinthunden [The Greyhound]. Stockholm: Wahlstrm
& Widstrand, 2004.
Hawkins, Anne Hunsaker. Recontructing Illness: Studies in Pathography.
Second edition. Indiana: Purdue University Press, 1999.
Johansson, Anna. Vissa fddes perfekta och andra som jag [Some Were
Born Perfect, Others Like Me]. Stockholm: Norstedts, 2002.
Jonsson, Ia. Som en mnblomma [Like a Moon Flower]. Viken: Replik,
2000.
Jrgensdotter, Anna. Pappa Pralin [Daddy Chocolate]. Stockholm:
Bonniers, 2002.
Lagercrantz, Caroline. Malva [Mallow]. Stockholm: Forum, 2004.
Martinez, Ana. Trsta mig aldrig med en karamell [Never Comfort Me
With a Sweet]. Stockholm: Ekerlids frlag (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 fr alla, 1996.
Olson, Greta. Reading Eating Disorders: Writings on Bulimia and
Anorexia as Confessions of American Culture. Frankfurt am Main: Peter
Lang, 2003.
111
Plsson, Berny. Vingklippt ngel [Angel with Clipped Wings]. Stockholm:

Forum, 2004.
Samuelson, Katarina. Ludenben [Hairylegs]. Lund: Bokfrlaget Augusti,
2005.
Solheim, Jorun. Den pne kroppen. Om kjnnssymbolikk 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). Nr
mrkret kom [When Darkness Came]. Vsters: Frfattarhuset, 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 Websters
New World Medical Dictionary. Certainly, the description fulfils the aim
of such dictionaries, that is to give a succinct summary of the condition.
116
Writing Over the Illness
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 tiology 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 Websters
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
Charlotte Baker
117
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 Grainvilles
Le Tyran Eternel, Williams Sassines Wirriyamu and Mmoire dune
Peau, and Didier Destremaus Ngre Blanc expose this tendency.
Grainvilles 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. Sassines representation
of his sociopathic protagonist Milo Kan demonstrates this tendency, but at
the same time attempts to explain the cause of such deviance, for Milos
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, Milos 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
118
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 individuals
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. Sassines 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 Sassines 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
Charlotte Baker
119
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
Grainvilles 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
Samates 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 Sassines reference in
Mmoire dune 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 Sadous 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 Sassines Mmoire dune
Peau, Milo is constantly reminded of his physical inadequacy and this is
only aggravated by his mothers 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 Milos
whiteness is equated to physical weakness whilst, typical of Western
stereotypes of blackness, Charles is portrayed as being strong and virile,
120
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 Samates milky-white
body and his mother Mbuyas 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 Mbuyas blackness that confirms her as a native of her country,
a pure and authentic product of deepest Mozambique.20 However, in
contrast to his mothers 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
fathers 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
didnt 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. Samates mothers
attempts to see beyond his albinism only bring the realisation that her
sons 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
Grainvilles 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 Sassines
representation of the albino Condlo who struggles to comprehend the
Charlotte Baker
121
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
Destremaus Ngre 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 Houphout-Boigny expresses
his horror at the revelation that the albino Alpha is his son,
Ill 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 Akou chiefs. Our
genealogy proves it. My father, a Samori soldier, hero,
rebel, conqueror.24
A similar reaction is found in Destremaus Ngre Blanc as
Samates father decides that the albino couldnt 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
Destremaus novel for it is in fear for her sons 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
122
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
Sassines 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 Condlos 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 Ren
Girards 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,
Charlotte Baker
123
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 described33
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 writers 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
124
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 Websters 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) <http://www.albinism.org>
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
Hyams horror film, End of the Days (1999). Likewise, La Lunatica, a
Charlotte Baker
125
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 quun 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.
126
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, Martins 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. Ngre 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, Ren Le Bouc missaire Paris: Grasset, 1982.
Grainville, Patrick. Le Tyran ternel. 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.
<http://www.vso.org.uk/publications/orbit/71/community.htm> (31/06/05)
Sassine, Williams. Wirriyamu. Paris: Prsence Africaine, 1976.
Sassine, Williams. Mmoire dune peau. Paris: Prsence Africaine, 1998.
Shiel, William C. Websters New World Medical Dictionary. London:
Wiley Publishing, 2003.
Charlotte Baker
127
National Organization for Albinism and Hypopigmentation (NOAH). 11

June 2005. <http://www.albinism.org> (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.

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 liberalisms 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-
130
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,
Elisabeth Gedge
131
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
132
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
Elisabeth Gedge
133
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 Oultrams 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
womans 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
134
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 womens 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,
Elisabeth Gedge
135
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 Joffes 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
136
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 correctionor 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
Elisabeth Gedge
137
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 womens 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 slaves 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
138
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-Cohens 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
Elisabeth Gedge
139
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 Wolfs 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
140
10 Oultram, 2.
11 Adrienne Asch, Why I Havent 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
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)
Elisabeth Gedge
141
Bibliography
Asch, Adrienne. Why I Havent 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
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
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
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.
142
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 Roses 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
144
Correction and the Changing Notions of Recovery
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 Roses 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 ones 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 ones health. Discourses such as these are rarely
challenged in todays 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
Donavan Rocher
145
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 enterprises6 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 individuals 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
146
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
Donavan Rocher
147
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
148
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 Kramers Listening to Prozac (1993) and
Elizabeth Wurtzels Prozac Nation (1994). Not only does Wurtzels 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 Rudens 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:
Donavan Rocher
149
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
150
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 ones will to a higher power and completely
abstain from imbuing alcohol.
Liz Scotts 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
Donavan Rocher
151
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
152

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
Donavan Rocher
153
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
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.
154
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 Jellineks 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.
Donavan Rocher
155
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.
156
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 Veras
The Stone Virgins
Zo 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. Veras 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 Veras
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 respect1
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
160
Perceptions of Pain in Contemporary Zimbabwean Literature
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 Zimbabwes most emotive and eloquent
writers. Veras 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. Veras 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 Veras 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 Veras text, the
source of the pain themes discussed.
Zo Norridge
2.
161
Perceptions of pain - the privileged role of fiction

The Stone Virgins explores a contested period of Zimbabwes
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 Veras novel to a historical text.
Terrence Rangers 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
headmasters wife was forced to cut off her
husbands 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
162
In Rangers 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. Veras text also mentions a woman who was
forced to cut off her husbands head with an axe.7 Yet, in contrast to
Rangers empirical reporting, this incident is introduced by the hospitalised womans traumatised and uncertain screams and develops into a
meditation from Noncebas 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, Veras fiction is more concerned with the perceptions of the person in pain.
At first sight then it might seem clear that Veras 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 Rangers 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
Stauntons 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 contributors 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
pains 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
Zo Norridge
163
appear socially unacceptable. Even today, despite the work of many post
independence womens 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 writers 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, Veras 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 its own exclusive, aesthetically
coded meaning. Alongside the emotive power of aestheticisation, the obviously literary nature of Veras texts also reminds the reader of the
novels creative and subjective nature. Unlike more seamlessly factual
accounts of the past, Veras 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 novels
characters and find meaning in their experiences. Veras complex poetic
style and her novels inconsistencies and gaps in narration challenge the
reader to make sense of the experiences described, reflecting the real pain
patients 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. Veras 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. Veras
fifth novel, which builds on her previous explorations of violence and
164
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 Veras 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 Veras 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 Veras 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 Veras
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 past13 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 patients 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 Franks theory that the pain
experience forms the filter for subsequent narratives, because it is the
patients illness that provides the motivation for remembering the past.15
Another manner in which Veras 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
Zo Norridge
165
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 Noncebas encounter with the violent Sibaso is as brutal as
the incident itself. She stays in her aunt Silhes 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 sisters death
and circling the rupture that changed her world. The patients way of being
in the body continues to change after her reconstructive surgery, but
Noncebas sense of physicality is never the same as before.
The passage describing Noncebas awakening in hospital also
demonstrates how in Veras text physical belonging is fundamentally
linked into the person in pains 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 Noncebas 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 aunts 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
166
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
Veras 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 novelists 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 Veras
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.
Zo Norridge
4.
167
Chaotic stories and polythetic pains

We have seen that fiction offers a privileged space for the
exploration of pain and that Veras 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 Noncebas painful
witnessing of her sisters beheading, but different since the wife feels the
agony of guilt whilst Nonceba is also suffering severe physical pain from
facial mutilation. Noncebas physical pain is related to the local store
keepers 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 Needhams 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 Wittgensteins 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.
168
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. Womens lives in all Veras
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 Noncebas 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
peoples pains in ways that relate to their own experiences of illness. As
with Veras 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
Zo Norridge
169
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
Franks 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 Veras 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 Veras 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 Conrads 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
170
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. Im 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 Im keen to
capture that collapse.34
The Stone Virgins represents the deep internal pain of wounded

protagonists through free-flowing and complex narration. Veras 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 Veras fiction allows
us privileged access to the most intimate aspects of her female protagonists 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 Veras 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.
Zo Norridge
171
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.
172
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:
<http://www.wellesley.edu/sociology/papers/Interview%20Veena%20Das
-Cushman.pdf> (March 2004).
173
Zo Norridge
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
and
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.
174
Note on Contributor
Zo 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. Zo 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
womens 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
176
Women Make Sense of Pelvic Pain
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 womens 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
Victoria Grace and Sara MacBride-Stewart
177
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 womens
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 bodys 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
178
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
Hoffmeyers 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 bodys 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
179
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
interviewers 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 womens 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)?
180
3.
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 wasnt 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, theyd [ovaries] be gone like a
shot, cut out) It was also the case for injurious processes associated with
181
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 partners 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 theyre 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 uterines busy
contracting away and thats causing the blood, whether it accelerates the
loss of blood from the wall of the uterus or whatever, um, but you know, so
Ive 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 [] Itd 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); Ive sort of got to know pretty well whats down there and
where its coming from (26,7:34); itd 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
182
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: Ive 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 whats going on, mmm, so it sort of helps in a way
(26,61:34); Ill try and search for a, a model until Ive 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 dont think thats 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 whos going to have a
183
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. Its 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 someones got a broken leg but a mental illness, you
know, its not seen or, and I guess, in some ways I probably liken it to that
because I cant see whats wrong, its 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 whats 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 whats going on, mmm, so it helps in a way, I think its
worse if you dont know whats going on and you almost think like no one
will believe you, yeah, which is awful, but now I know exactly whats
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.
184
5.
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 its in your
pelvic region, I mean it takes in a few wee bits and pieces there, and you
know, and theres your tummy and your pelvic area, and the top of your
legs and you know, its that little area there, well I mean, its not your legs
and its not your tummy, its just there, yes, and its at the front, its not at
the back in which case it would be your bottom, sort of thing, you know
and its not your back, coz its not your back its at your front [] but
thats the thing, its 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 wasnt 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 dont really know too
much about where everything is there, yeah (4,34:22); its down in that
corner somewhere (8,35:51); it wasnt 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
185
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 Baudrillards 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
Kristevas 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
186
encounter. The gendering of this process is doubly underscored by

Kristevas 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 Wilsons 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 mothers 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 Freuds 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 Womens Health: Contemporary
187
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-Pontys 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).
188
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. Baudrillards 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. Womens 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.
189
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.
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192
Note on Contributors
Victoria Grace, School of Sociology and Anthropology, University of
Canterbury, New Zealand (victoria.grace@canterbury.ac.nz) and Sara
MacBride-Stewart, School of Social Sciences, Cardiff University, Wales
(macbride-stewarts@cardiff.ac.uk). 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 individuals 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-
194
Barriers to Talking about Chronic Pain
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
Stella Howden
195
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, 1 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,
196
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 individuals 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): Youve 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 participants 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
Stella Howden
197
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 wasnt 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 thats 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] dont know what
causes it so they cant sort it out; its 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.
198
5.
Theme 2: resisting the image of: self as a pain-talker

Self is a socially constructed concept; the individuals 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 dont want to have it [RA]. Its just
like, I dont want this thing.. You know, Ill never
let on to John [participants husband] that Im sore. I
mean, he will ask me and Ill just say, Im fine, Im
fine. Its 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, Im OK, yes, because you
dont want to be walking about the house moaning
about it all the time do you? Well, thats the way I
feel. They are [then] wanting to look after you, but
you dont 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
Stella Howden
199
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, Im 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)
200
whilst omitting other facets e.g. the emotional or psychological consequences of pain.
David: I dont 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] dont need to if they are focussed.
Interviewer: What do you think the doctors focus is
then? David: Finding out what is going on! Its 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 doctors 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 individuals 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 doctors role is defined as
dealing with disease, while the patients 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 doctors 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
Stella Howden
201
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 individuals 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.
202
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 Sderberg, Berit
Lundman and Astrid Norberg, Struggling for dignity: the meaning of
womens 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 Sderberg,
Berit Lundman and Astrid Norberg, Struggling for dignity: the
meaning of womens 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-
Stella Howden
203
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.
204
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.
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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.
Sderberg, Siv, Lundman, Berit and Norberg, Astrid. Struggling for
dignity: the meaning of womens 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.
Stella Howden
207
Subramaniam, Vanitha, Stewart, MW. and Smith, JF. The development

and impact of a chronic pain support group: a qualitative and quantitative
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Note on Contributor
Stella Howden, PhD, works in the physiotherapy subject area, School of
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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
212
Standardising Semen
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
Susan Rogers
213
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 malformations12 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-
214
Standardising Semen
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 cells16 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 Epsteins 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.
Susan Rogers
2.
215
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
216
Standardising Semen
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 Columbias Royal
Commission issued the Report of the Royal Commission on Family and
Childrens 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
1980s 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, todays 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 experts recognition of situated knowledge and
addresses patients concerns for procedural standards.
Susan Rogers
217
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
218
Standardising Semen
x
CMV IgG,IgM ** All Donors are IgM Negative
Genetic Testing:
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.
Susan Rogers
219
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 childrens 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 physicians 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
220
Standardising Semen
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 childrens 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 recipients 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 Childrens Law;
Artificial Insemination put forth a model agreement form for donor use, of
Susan Rogers
221
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.
222
Standardising Semen
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
55
15
8
Brown
Black
Graduate
Deg
Het
44-131907
Indian
35
58
14
0
Brown
Brown
Graduate
Deg
Het
Jewish
Donor#
Ethnicity
Age*
Ht
Wt
Eye
Color
Hair
Color
Education
Sex
Orient
10-230319
Jewish
27
61
160
Green
Brown
Graduate
Deg
Het
32-100808
Jewish
50
57
142
Brown
Brown
College
Deg
Het
Latino
Donor#
Ethnicity
Age*
Ht
Wt
Eye
Color
Hair
Color
Education
Sex
Orient
38-131213
Mexican,
Lebanese
42
64
180
Brown
Brown
College
Deg
Gay
Caucasian
Donor#
Ethnicity
Age*
Ht
Wt
Eye
Color
Hair
Color
Education
Sex
Orient
4-112304
Polish,
Slavic
38
57
175
Green
Brown
Some
College
Gay
3-160119
Norwegia
n, Irish
42
59
165
Blue
Brown
Graduate
Deg
Bi
12101612
Caucasian
37
58
220
Green
Red
College
Deg
Gay
14231920
Irish
44
56
145
Brown
Hazel
Brown
College
Deg
Gay
15012713
Caucasian
27
511
155
Brown
Brown
Graduate
Deg
Gay
Susan Rogers
223
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
224
Standardising Semen
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, Ive 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.
Susan Rogers
225
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.
8 Ibid. p. 334.
9 Ibid. p. 339.
10 D.W. Richardson et al Frozen Human Semen (London: Martinus
Nijhoff Publishers, 1980), 150.
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
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.
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 childrens 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.
33 Moore, 278.
226
Standardising Semen
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
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.
Susan Rogers
227
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 childrens 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.
228
Standardising Semen
Timmermans, S. & Leiter, V. The redemption of thalidomide:

standardizing the risk of birth defects. Social Studies of Science, 30
(2000): 41-71.
Websites
<http://www.aatb.org > (11 Jan 2005).
<http://www.cryobank.com> (20 May 2005).
<http://www.fairfaxcryobank.com>
<http://www.gayspermbank.com/donorlist.htm> (11 Jan 2005).
<http://www.geniusspermbank.com> (Jan 20 2005)
<http://www.ronsangels.com/index2.html> (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-
230
Media Treatment of Organ Donation
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 publics 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.
Peter J. Schulz
231
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 populations 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
232
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 Zrcher Zeitung, Tages-Anzeiger), ten regional dailies
(Mittelland Zeitung, Berner Zeitung, Basler Zeitung, Vingtquatre Heures,
Tribune de Genve, 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
Peter J. Schulz
233
donor organs in Switzerland, conditions to harvest organs, individuals or

relatives consent, brain death, information on how to become an organ
donor (procedural knowledge), and attitudes towards organ donation (as
altruistic, contribution to recipients 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 Zrcher
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 Zrcher
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
234
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 persons 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
Peter J. Schulz
235
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 ones 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.
236

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
v
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
Newspaper
Figure 1: Procedural Knowledge

It is also remarkable that the frequency of these statements varied
significantly by newspaper: the Tages-Anzeiger, Neue Zrcher 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 ones 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 peoples lack
of familiarity with the issue of organ donation and their inertia is the main
237
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 havent 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 ones
assessment of what one is likely to do in future are related. Among the
238
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
Dont 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 donors 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
Peter J. Schulz
239
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 Zrcher 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 Zrcher Zeitung and Basler Zeitung), there is hardly
any information on where to get such a card and that one can just as well
240
declare ones will to ones 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 peoples 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 ones willingness to donate ones
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 publics 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
Peter J. Schulz
241
(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): 674682.
7 Catalina Conesa et al., Influence of Different Sources of Information on
Attitude Toward Organ Donation: A Factor Analysis, Transplantation
Proceedings 36 (2004): 12451248.
8 Jos Martnez et al., Percepcin social de la donacin en Espana tras la
dcada de los transplantes, Nefrologia 21 (2001): 45. Antonio Perz et
al., Factores sociales y psicolgicos que influyen en la donacin de
rganos, Psicothema 5 (1993): 241.
9 Rafael Matesanz, Organ Donation, Transplantation, and Mass Media,
Transplantation Proceedings 35 (2002): 987989.
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.
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Transplantation Proceedings 35 (2002): 987989.
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): 674682.
Peter J. Schulz
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Prez, Antonio, M., Domnguez Roldn, Jos M. and Murillo Cabezas,

Francisco. Factores sociales y psicolgicos que influyen en la donacin
de rganos. 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.
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Rainer and Rogiers, Xavier. Predictors of intention to donate organs: An
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Note on Contributor
Peter J. Schulz (schulzp@lu.unisi.ch) 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.

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Social Studies of Health,

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