The Social Construction of Death

The Social Construction of Death
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The Social Construction of
Death
Interdisciplinary Perspectives
Edited by
Leen Van Brussel and Nico Carpentier

Vrije Universiteit Brussel, Belgium
Introduction, selection and editorial matter © Leen van Brussel and
Nico Carpentier 2014
Individual chapters © Contributors 2014
Softcover reprint of the hardcover 1st edition 2014 978-1-137-39190-2
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First published 2014 by
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Dedicated to the memory of David Keith Ashton (1945–2014)
Contents
List of Illustrations ix
Notes on Contributors x
Introduction 1
Part I The Social Construction of Death
1 A Discourse-Theoretical Approach to Death and Dying 13

Leen Van Brussel
2 Studying Illness and Dying through Constructivist

Grounded Theory 34
Linda Liska Belgrave and Kathy Charmaz
3 Feeling Bodies: Analysing the Unspeakability of Death 52

John Cromby and Adele Phillips
Part II Death in Popular Media
4 Representations of Corpses in Contemporary Television 75

Tina Weber
5 Ladies’ Choice? Requested Death in Film 92

Fran McInerney
6 The Expertise of Illness: Celebrity Constructions and Public

Understandings 114
Daniel Ashton
Part III Political and Ethical Dimensions of Death
7 Death, Fantasy, and the Ethics of Mourning 137

Jason Glynos
8 Ethics, Killing and Dying: The Discursive Struggle between

Ethics of War and Peace Models in the Cypriot
Independence War of 1955–1959 161
Nico Carpentier
vii
viii Contents
9 On the Deathly Construction of Society 185

Arnar Árnason
Part IV ‘Governing’ Death and the Dead
10 From Theft to Donation: Dissection, Organ Donation and

Collective Memory 205
Glennys Howarth
11 Digital Objects of the Dead: Negotiating Electronic Remains 221

Margaret Gibson
12 ‘This In-Between’: How Families Talk about Death

in Relation to Severe Brain Injury and Disorders of
Consciousness 239
Celia Kitzinger and Jenny Kitzinger
OPEN This chapter is available open access under a CC BY license
via palgraveconnect.com
Afterword: The Social Construction of Death: Reflections

from a Quantitative Public Health Researcher 259
Joachim Cohen
Index 271
List of Illustrations
Figures
7.1 Pathways of loss 147

7.2 American, British and German cemeteries in
Normandy, France 152
8.1 British anti-EOKA leaflet 175
9.1 Memorial crosses by Suðurlandsvegur, Iceland 193
9.2 Road deaths, front cover of DV newspaper 196
Tables
5.1 List of English-language films containing a requested

death theme made between 1960 and 2010 96
5.2 List of English-language films containing a mercy
killing theme made between 1974 and 2001 104
13.1 An ideal-typical description of the differences
between the social constructionist and (post)positivist
research traditions in thanatology 264
ix
Notes on Contributors
Arnar Árnason is Senior Lecturer in social anthropology at the University

of Aberdeen. He has carried out ethnographic fieldwork in North East
England, Japan, Scotland and Iceland and writes on the politics of death
and grief.
Daniel Ashton is Senior Lecturer in the School of Humanities and

Cultural Industries, Bath Spa University. In 2010–2012 he co-led (with
Dr Rebecca Feasey) the ‘Celebrity, Risk and the Media’ project that
investigated public understandings of the ‘Jade Effect’. Research find-
ings have been shared through presentations at national and inter-
national conferences and seminars, and published in the journal
Journalism.
Linda Liska Belgrave is Associate Professor of Sociology and Director of

the Graduate Program in the Department of Sociology at the University
of Miami. Her research interests include medical sociology, particu-
larly overlapping with gerontology, social psychology, social justice,
and grounded theory. She has pursued research on elders’ experience
of well-being, the daily lives of African American caregivers of family
with Alzheimer’s disease, the conceptualisation of successful ageing, and
academic freedom.
Nico Carpentier is Associate Professor at the Communication Studies

Department of the Vrije Universiteit Brussel (VUB – Free University of
Brussels) and Lecturer at Charles University in Prague. He is also an
executive board member of the International Association for Media and
Communication Research (IAMCR) and he was vice-president of the
European Communication Research and Education Association (ECREA)
from 2008 to 2012.
Kathy Charmaz is Professor of Sociology and Director of the Faculty

Writing Program at Sonoma State University. She has written The Social
Reality of Death and two award-winning books, Good Days, Bad Days:
The Self in Chronic Illness and Time; and Constructing Grounded Theory,
which has been translated into Chinese, Japanese, Korean, Polish
and Portuguese. Her current work concerns medical sociology, social
psychology, and writing for publication.
x
Notes on Contributors xi
Joachim Cohen is Medical Sociologist and a Postdoctoral Research

Fellow of the Research Foundation – Flanders (FWO), and a professor of
public health and end-of-life care at the End-of-Life Care Research Group
of Ghent University and Vrije Universiteit Brussel. He has published over
70 articles in international peer-reviewed journals and edited a recent
book published by Oxford University Press on a public health perspec-
tive on palliative care.
John Cromby is Psychologist at Loughborough University. Previously he

worked at the Universities of Bradford and Nottingham, and in mental
health, learning disability and drug addiction settings. His research
primarily concerns the ways that bodies and social relations jointly
constitute experience, and he is exploring their intersection in relation
to topics including emotional responses to crime, nurses’ moral distress,
paranoia, clinical misery, and other mental health difficulties.
Margaret Gibson is Senior Lecturer in the School of Humanities, Griffith

University, Australia. She is author of Objects of the Dead: Mourning and
Memory in Everyday Life and numerous book chapters and journal arti-
cles on the subjects of ethics and representations of death, the scene of
death, roadside memorials, melancholy objects, death and community.
Jason Glynos teaches Political Theory at the Department of Government,

University of Essex. He has published in the areas of poststructuralist
political theory and Lacanian psychoanalysis, focusing on theories of
ideology, democracy, and freedom, and the philosophy and method-
ology of social science. He is co-author of Logics of Critical Explanation in
Social and Political Theory (2007).
Glennys Howarth is Professor of Health Social Science at Plymouth

University. Prior to that she was a Professor in the Faculty of Health
Sciences at the University of Sydney and Professor of Sociology and
Founding Director of the Centre for Death and Society at the University
of Bath. She has been researching and publishing in the field of death
and dying for almost 20 years. Her publications include Death and Dying:
A Sociological Introduction (2007).
Jenny Kitzinger is Co-director of the Cardiff–York Chronic Disorders

of Consciousness Research Centre and co-author of a series of papers
on death, end-of-life decision making and the vegetative or minimally
conscious state. She is Professor of Communications Research at Cardiff
University and has written extensively about topics ranging from AIDS
and cancer to ethical debates about emerging technologies. In May 2013
xii Notes on Contributors
she ran the ‘Before I Die’ festival in Cardiff designed to encourage public
debate about death and dying.
Celia Kitzinger is Co-director of the York–Cardiff Chronic Disorders

of Consciousness Research Centre and co-author of a series of papers
on death, end-of-life decision making and the vegetative or minimally
conscious state. She is a chartered psychologist and professor in the
Sociology Department at the University of York. Her research focuses
on interpersonal communication – especially in relation to gender and
sexuality and medical issues and she is Principal Investigator on an
ESRC-funded project on advance decisions to refuse treatment.
Fran McInerney is Chair of Aged Care at the Australian Catholic

University and Mercy Health in Melbourne, Australia. She is a registered
nurse and a sociologist, holding postgraduate qualifications in applied
science, education, social science, and public health. She has practised,
taught, researched, and published in aged and palliative care over the
last 25 years. Her research interests include social responses to death
and dying, requested death, dementia as a terminal condition, and the
nexus between aged and palliative care.
Adele Phillips is a trainee clinical psychologist working in the NHS

and studying at Birmingham University UK. She graduated from
Loughborough University with a first class honours degree in Psychology
and then completed a Masters in Research Methods. Having worked in
mental health settings, this is where Adele’s research interests predomi-
nantly lie. Exploring experiences of children’s mental health difficulties
and their effects upon families are of particular interest.
Leen Van Brussel is a PhD candidate at Communication Studies

Department of the Vrije Universiteit Brussel (VUB). Funded by the
Research Foundation Flanders (FWO), she studies the discursive construc-
tion of the good death in the Belgian written press.
Tina Weber studied social science at Humboldt University of Berlin,

graduated in 2005 and completed a PhD in sociology in 2010 at the
Technical University Berlin. She is working for the research project on
transmortality at the Department of Sociology at the Technical University
Berlin. For her diploma and dissertation she conducted numerous field
studies at funeral homes in Berlin and the Los Angeles coroner’s office.
Introduction
Death as a social construction
Humans have a complex – and possibly unique – relation to death,

and especially to the awareness of dying; we not only know that we are
mortal, but we also know that we know. In other words, we are aware of
being aware (Bauman, 1992). It comes as no surprise, then, that death has
a long history of being a key ‘thought anchor’. Today, a variety of disci-
plines from the social sciences and the humanities, such as sociology,
philosophy, anthropology and psychology (see for instance the work of
Glennys Howarth, Steven Luper, Mary Bradbury and James Green), have
a well-established tradition of studying death in all its forms – the study
of social characteristics and attitudes towards death, cultural variations
in dealing with death and dying, individual experiences with death and
dying, and so forth.
Thanatological research in the social sciences and the humanities
acknowledges that death is culturally and socially embedded, entailing
a rich variety of ways in which groups and individuals deal with death
and dying. Simultaneously, it is notable that (recent) publications on
the social and cultural study of death have taken the idea of the social
construction of death on board, but often shied away from explicit reflec-
tions on the underlying ontologies and epistemologies of this paradigm.
For this reason, one of the aims of this volume is to strengthen the para-
digmatic reflection in social and cultural thanatology and to contribute
to a theoretical reinforcement of the field. The other objective of this
volume is the inverse of the first one, as we also want to put death and
dying more explicitly on the (theoretical and analytical) agenda of social
constructionism and social constructionist approaches in general.
1
2 Leen Van Brussel and Nico Carpentier
Even when the social construction of death paradigm has gained a

foothold in thanatology, for those who are not familiar with the para-
digm, it might – at least at first sight – seem strange to talk about death
as a social construct as such, as death is indeed one of the most perva-
sive phenomena of the social, and sometimes is, with a slight sense of
drama, described as ‘the only certainty in life’. Death and dying are,
of course, biological (or biochemical) phenomena; linked (at least in
Western thought) to the cessation of heartbeat and breathing followed
by ongoing processes of disintegration. Death, therefore, would seem
to be the ultimate biological essentialism. The dominant definition of
death in terms of end/cessation/termination does open up questions in
relation to the (constructed nature of the) meaning of what it means
to die, however, as we have argued elsewhere (Carpentier and Van
Brussel, 2012). One key debate illustrating the instability of the defini-
tion of the moment of death is centred around the question of whether
death-as-an-end should be articulated as a process or an event. While
Morison (1971), for instance, argues in favour of defining death as a
process, Bernat et al. (1981, p. 389) defend the death-as-an-event artic-
ulation, saying that ‘Death should be viewed not as a process but as
the event that separates the process of dying from the process of disin-
tegration.’ While the definitions of Morison and Bernat et al. remain
embedded within a dominant biomedical model, the constructed nature
of death as a singular biological process becomes even more clear when
we set aside our modern Western secular gaze and take a look at alter-
native ways of defining death and dying, in Western and non-Western
religious cultures, such as the Hindu culture, where dying is defined as a
process where the soul ritually detaches from the body (Robben, 2004).
But then again, while the definition of death is culturally embedded,
the changes the dying body goes through seem to put certain restric-
tions on the way death is or can be thought of as a social construct.
We thus cannot deny the fact that death has a clear materialist dimen-
sion in the sense that it is an event/process/moment that exists and
occurs independently from human will, thought and interpretation. At
the same time, we need discourses – and the notion of discourse refers
both to ‘big D’ discourses as culturally shared systems of meaning and
‘little d’ discourses as talk and interaction (Gee, 2005) – to make sense of
the material, which is why this volume focuses on the meaning of death
in all its forms. We argue that studying death and dying through the
lens of their social construction enables scholars to de-essentialise and
de-deconstruct often taken-for-granted concepts, arguments and prac-
tices that organise and structure the way groups and individuals deal
Introduction 3
with death and dying. This does not mean, however, that we should
neglect (or even worse, deny) the material dimensions of death. Rather,
we want to argue that the material and the discursive are deeply inter-
twined, where the material refers to the materiality of the object (for
instance the (dead) body), to the materiality of practices (for instance
medical practices relating to death or ritual practices of mourning), as
well as to the materiality of the field where death and dying are socially
constructed (for instance the media field and the medical field), and
where the discursive refers to the socially constructed and culturally
specific meanings attached to death and dying.
Social construction, post-structuralism and thanatology
The thirteen contributions gathered in this volume approach death as

a social construction. Let us now consider the social construction (of
death) paradigm in more general terms in order to identify the paradig-
matic premises the chapters of this book share.
The main premise of this volume is that society – and all objects and
subjects functioning therein – is the outcome of continuous processes of
meaning-making, rather than a fixed reality. Although other theoretical
models, such as symbolic interactionism, also feature prominently, the
volume is still deeply influenced by post-structuralism, and its argu-
mentation that meaning is generated through signifying relations that
are not fixed in a structure, but that are ambiguous and contingent.
This post-structuralist argument comes with a non-essentialist and non-
foundationalist position, rejecting the existence of universal meanings
with underlying systematic structures and foundations. These positions
also imply the rejection of a rigorous realism where social reality is
regarded as having an underlying objective and essential structure that
determines social relations and identities. Rather, constructionist tradi-
tions argue that there is no pre-given, (self)-determining essence capable
of structuring and fixing identities – whether it be it God, reason, the
desire to survive, or the laws of capitalism, which have all been celebrated
as fundamentally explaining the course of history and the structure of
society (Torfing, 1999). The post-structuralist rejection of essential social
fundaments does not suggest a total impossibility of social structure,
however. As Laclau and Mouffe (1985) argue in their post-structural
discourse theory; meaning has to be partially fixed, since the abundance
of meaning would otherwise make any meaning impossible.
In the field of thanatology, a post-structuralist ontology comes with the
argument that death and dying derive their meanings through contingent
signifying relations. While the meanings of death and dying, and objects/
practices related to them, consist of a series of often taken-for-granted
elements that construct dominant structures of meaning, these elements
at the same time open up a range of gaps, complexities and unfixities,
allowing for resistance, new discursive struggles and attempts to rearticu-
late sedimented meanings of death and dying.
Varieties of social constructionism: macro/micro – the

collective/the individual
While all the contributions included in this volume draw from the
premises outlined above, it is crucial to note that there is no such thing
as ‘the’ social construction paradigm. Generally speaking, there are two
broad perspectives that dominate the paradigm; a more macro-oriented
social constructionist perspective that focuses on collective structures of
meaning, and a more micro-oriented social constructivist perspective
that is above all interested in the agency of groups and individuals in
generating meaning (Andrews, 2012). Within the field of thanatology, a
social constructionist approach entails a research interest in, for instance,
the meanings of death and dying circulating in popular media (Part II of
the volume), in changing practices of mourning, and changing attitudes
towards certain death-related practices (addressed for instance in the
chapters of Howarth and J. and C. Kitzinger), and in the construction
of ethical and political frameworks surrounding death and dying (Part
IV of the volume). A social constructivist approach, on the other hand,
comes with a research interest in – amongst others – the way individuals
construct the meaning of death and illness through talk-in-interaction
and the way individuals construct their own images of those they mourn
(issues that are for instance addressed in Jenny Kitzinger and Daniel
Ashton’s contributions).
Meanings tied to death and dying are always the result of complex
interplays between social structures and collective meaning-systems
on the one hand and on the other everyday social practices in which
groups and individuals actively negotiate and sometimes contest these
structures and systems – both in social interaction and through cogni-
tive processes (see for instance Potter, 2003) – (Giddens, 1979). As such,
it is more suitable to talk in terms of a macro/micro continuum than in
terms of a macro/micro dichotomy, which also brings in the possibility
of combining both approaches – as some of the contributions illus-
trate. The chapter of Jenny and Celia Kitzinger, for instance, focuses
on the way relatives of coma patients construct the meaning of death
Introduction 5
(in relation to the meaning of life), while also situating and contextu-
alising these constructions in relation to more encompassing (biomed-
ical) discourses. In addition, a more elaborate discussion on the different
approaches of social constructionism/ivism in the study of death and
dying can be found in Part I, in combination with all the other contri-
butions in Parts II–IV that each take a particular position in this macro/
micro continuum.
Interdisciplinary perspectives
As social constructionist/ivist approaches do not come with thematic

restrictions (that is, in terms of ‘what’ is approached from a social
constructionist/ivist perspective), and thanatology in itself also has
many topical interests, this volume includes a wide variety of death-
related themes.
The wide scale of topics dealt with is also tightly connected to thana-
tology’s interdisciplinariness (but also multi- and transdisciplinariness –
a discussion we will not engage in here, for reasons of lack of space),
which is a direct result of the omnipresence of death and dying in the
social. This volume reflects and emphasises the interdisciplinariness
of thanantology in three ways. First, the volume includes disciplines
that have a well-established tradition of studying death and dying (for
example sociology and anthropology), and disciplines that have until
recently shown little interest in the study of death and dying, including
media and cultural studies. The volume not only captures (some of) the
diversity of disciplines dealing with death and dying, but also – and this
is the second level at which the interdisciplinary character of the book
works – the diversity of disciplines where social constructionism/ivism
is adopted, or can be adopted, for the study of death and dying. While
the first part of the volume illustrates how different disciplines theorise
and analyse death as a social construction, the other parts of the volume
demonstrate the way different disciplines deploy social constructionism/
ivism to empirically study death and dying. Third, many of the chapters
themselves have an interdisciplinary dimension, and combine thana-
tology with theories developed within other disciplines such as anthro-
pology, sociology, and media and cultural studies.
Outline of the book
The contributions to this volume are divided into four parts. The first
part, entitled ‘The social construction of death’ sets the stage for the
book by introducing three different approaches towards theorising

and analysing the social construction of death. The other parts of the
volume focus on particular spheres, particular dimensions, and partic-
ular practices of social construction. We are by no means claiming that
this volume is exhaustive in the sense that it would cover all disciplines
where death and dying are studied, nor all topics and themes that are of
(potential) interest for thanatologists. However, the organisation of the
contributions in four particular parts is not arbitrary, but is informed by
specific arguments, which will briefly be elaborated below.
Part I: the social construction of death

The first part of the volume assembles different approaches towards the
social construction of death and dying. With this part, we show how
‘the social construction of death’ is not an empty rhetoric, but rather
functions as a signifier that derives its meaning from being embedded
within a particular theoretical and analytical framework. Of course, the
contributions gathered here do not cover ‘the’ social construction of
death, for there are indeed a variety of spheres where social construc-
tion takes place, as well as a diversity of objects and many different
practices of social construction. The chapters presented here adopt a
particular constructionist/ivist approach to theorise as well as analyse
the construction of well-defined aspects of death and dying, without
claiming to offer a comprehensive approach towards ‘the’ social
construction of death and dying. Concretely, the first part of the volume
gathers three different approaches. In a first chapter, Leen Van Brussel
presents a discourse-theoretical perspective, embedded within a social
constructionist approach, which she uses to explore the changing
(big-D) discourses on medicalised death and to analyse the materialisa-
tion of these discourses in contemporary news coverage of euthanasia
in Belgium. A second contribution comes from grounded theorists Linda
Liska Belgrave and Kathy Charmaz, who highlight the value of studying
illness and dying – and more concretely people’s experiences therewith –
through a constructivist and symbolic interactionist-inspired grounded
theory perspective. The third chapter, written by John Cromby and
Adele Phillips, presents an affective approach to the social construction
of mourning and bereavement through language, making a case for
bringing the body (and hence the material) into the constructivist tradi-
tion. With these three contributions, the volume seeks to highlight –
again, in a non-comprehensive fashion – the way in which different
traditions of social constructionism/ivism can be adopted in the study
of death and dying.
Introduction 7
Part II: death in popular media

The second part of the volume explores a relatively under-developed
research area in thanatology, that of death and dying in popular media.
To date, indeed, death studies often position research on the mediations
of death and dying in the background. Existing research is presented in
discrete chapters in publications intended for a wider audience (see for
instance the work of Kearl (1989), Howarth (2007) and Bryant (2003)).
From their part, media and cultural studies have also shown relatively
little interest in the representation of death and dying. In response to this
gap within both disciplines, we opted to dedicate three chapters to death
and dying in popular media, thereby upgrading media-inspired thana-
tology research. A premise the chapters assembled in part II share is that
media are inseparable parts of the social. In this line of thinking, media
bring into circulation a variety of already existing discourses on death
and dying, making them visible and tangible. The choice to specifically
focus on popular media representations in the volume is informed by a
vulgarisation argument, formulated by Philippe Ariès (1981, p. 389) as
follows: ‘just as one can best measure the influence of psychoanalysis on
the culture of studying women’s magazines, similarly it is preferable ... to
study the phenomenon of death in the bastard forms of vulgarization.’
The popular media formats studied in the chapter of Fran McInerney
(film) and in the chapter of Tina Weber (TV serials) are hence important
repositories of ‘vulgar’ – although ‘popular’ is a better denominator –
representations of the phenomenon of death in all its forms. In addition
to the two chapters studying popular media contents, a third chapter,
written by Daniel Ashton, looks into audiences’ responses to media
coverage. Indeed, no reasonable ground is at our disposal to assume that
the discursive power of media content – that is the discourses material-
ised in the media text – should be privileged over audiences’ capacities
to interpret the content – that is of being creative with the discourses
and discursive elements offered to them through the media text.
Part III: political and ethical dimensions of death

Death and dying are surrounded by a wealth of political and ethical frame-
works, and this is not a new thing. ‘Thou shall not kill’ is indeed one of the
oldest and most universal ethical guidelines, illustrating that death and
dying have always had a public (and ethico-political) dimension. Today,
ethical and political frameworks surrounding death and dying are particu-
larly visible in particular spheres and areas, not in the least that of end-of-life
decision making – where a number of medical technologies for sustaining
life provoked fierce bioethical debates and put the issue of the permissibility
of medical intervention in the dying process on political agendas of many

different countries. Although one chapter in this volume does deal with
the medical(ised) construction of life and death (see Jenny and Celia
Kitzinger’s ‘This in-between’, Part IV), the contributions gathered in part
III of the volume situate the political and ethical dimensions beyond the
medical sphere, and focus on tragic and violent death. The chapters share
the assumption that ethical and political frameworks surrounding death
are not objective or neutral, nor ‘true’ in the traditional sense of the word,
but socially constructed as ‘true’. The contributions presented here aim to
deconstruct and uncover this, to date relatively underexposed, constructed
nature. By bringing political theory into thanatology, a number of highly
significant questions are raised and dealt with from a social constructionist/
ivist perspective, such as ‘when is it legitimate and ethical to kill?’ and
‘whose dead is significant, whose dead is not, and hence, whose death can
we mourn and whose dead can’t we mourn?’ Concretely, three chapters
dealing with the political and ethical dimensions of death and dying have
been included in this volume. First, Jason Glynos draws on the categories
of discourse, contingency and fantasy to stress the ethical dimensions of
mourning, illustrating the ‘conditions of mourning’ in an empirical study
of national identity in the case of World War II cemeteries in Normandy. In
another chapter, Nico Carpentier explores the ethics of death and killing
in the context of the Cypriot independence war – analysing the ways war
casualties are legitimated through diverse normative frameworks, and
showing the persistence of (ethical) models of war. Third, Arnar Árnason
uses an Icelandic story about a tragic car accident to highlight the political
dimension of death, by which he refers to the way identification facilitates
and allows for political mobilisation.
Part IV: ‘governing’ death and the dead

The last part of the volume gathers three chapters that shed light on the
way death and the dead are ‘governed’ through particular (technologi-
cal-discursive) politics. The contributions of Part IV share a focus on the
governing of dying, loss and mourning; highlighting the constructed
nature of the way we deal with the deceased and their remains. Until
relatively recently, the study of loss was largely the domain of (positivist)
psychology, where the dominant classifications of ‘normal’ and ‘deviant’
mourning, mainly based on the biomedical paradigm, find their origins
(Howarth, 2007, p. 195). In addition to the large corpus of psycholog-
ical literature on grief and mourning, a more culturalist research tradi-
tion has emerged (see for instance Eng and Kazanjian, 2003; Hallam
and Hockey, 2001). The contributions of this last part complement this
Introduction 9
tradition, but – in line with the rationale of the entire volume – explic-
itly shed light on the constructed nature of ways of dealing with the
dead body and of mourning the bereaved.
The contributions of the last part of the volume also share an emphasis
on technology (and are inspired by a science and technology studies
perspective) – that is to say, Gibson, Howarth and Kitzinger address the
question as to how particular technologies come with particular ways
of ‘governing’ death and the dead, and affect practices and rituals of
mourning and remembering the dead. First, Margareth Gibson sets
forth the question as to how new media govern the way we mourn and
remember the dead. Second, Glennys Howarth focuses on practices of
dissection and organ donation, which she connects to particular politics
of dealing with the dead body and discourses on the dead body. Finally,
Jenny and Celia Kitzinger consider the way patients with disorders of
consciousness are governed through dominant medical definitions of
death and dying and, interestingly, how relatives of these patients nego-
tiate, rearticulate and contest these definitions.
The volume ends with an afterword, which is included with the aim
of reaching out to the quantitative/empirical and more materialist/posi-
tivist approach to death and dying. In the afterword, Joachim Cohen
challenges the assumed irreconcilability of social constructionism/ivism
and quantitative research by illustrating how many studies on death and
dying adopting quantitative methods often, and like qualitative studies,
implicitly rely on social constructionist premises. From within his own
field of expertise, that of end-of-life care research, Cohen makes a case
for bringing the noble effort of contributing to actual patient care more
explicitly into the designs of social constructionist/ivist thanatology
while encouraging quantitative scholars to contextualise their research
by drawing more from a social construction paradigm. In short, our
volume ends by stepping outside the comfort zone of the social construc-
tion paradigm, as we fully realise that academic paradigms themselves
are spheres where meaning and knowledge are being constructed, and
paradigmatic dialogue thus remains a necessity.
Note
The editors are grateful for the support of the Research Council of the Vrije
Universiteit Brussel (VUB) (Research Grant HOA24), and of the Research
Foundation – Flanders (FWO) (Research Grant FWOTM558). We also want to
thank all participants of the research seminar on ‘The Social Construction of
Death’, which took place on 25 May 2012 in Brussels, and which was the starting
point of this project.
References
Andrews, T. (2012). ‘What is social constructionism?’, Retrieved from http://
groundedtheoryreview.com/2012/06/01/what-is-social-constructionism/, date
accessed 22 January 2014.
Aries, P. (1981). The hour of our death. New York: Alfred A. Knopf.
Bauman, Z. (1992). Mortality and immortality. Cambridge: Polity Press.
Bernat, J. L., Culver, C. and Gert, B. (1981). ‘On the definition and criterion of
death’, Annals of Internal Medicine, 94(3), 389–394.
Bryant, C. D. (2003). Handbook of death and dying. London: Sage.
Carpentier, N. and Van Brussel, L. (2012). ‘On the contingency of death: a
discourse-theoretical perspective on the construction of death’, Critical Discourse
Studies, 9(2), 99–115.
Eng, D. L. and Kazanjian, D. (2003). ‘Mourning remains’, in D. L. Eng and D.
Kazanjian (eds) Loss: The Politics of Mourning. Berkeley: University of California
Press, pp. 1–28.
Gee, J. P. (2005). An introduction to discourse analysis: theory and method. London:
Routledge.
Giddens, A. (1979). Central problems in social theory. Berkeley and Los Angeles,
California: University of California Press.
Hallam, E. and Hockey, J. L. (2001). Death, memory and material culture. Oxford:
Berg Publishers.
Howarth, G. (2007). Death: a sociological introduction. Cambridge: Polity Press.
Kearl, M. (1989). Endings: a sociology of death and dying. Oxford: Oxford University
Press.
Laclau, E. and Mouffe, C. (1985). Hegemony and social strategy: towards a radical
democratic politics. London: Verso.
Morrison, R. S. (1971). ‘Death: process or event?’, Science, 173(3998), 694–698.
Potter, J. (2003). ‘Discursive psychology: between method and paradigm’,
Discourse and Society, 14, 738–794.
Robben, A. (ed.) (2004). Death, mourning and burial: a cross-cultural reader. Oxford:
Blackwell.
Torfing, J. (1999). New theories of discourse: Laclau, Mouffe and Žižek. Oxford:
Blackwell.
Part I
The Social Construction of Death
1
A Discourse-Theoretical Approach
to Death and Dying
Leen Van Brussel
Death, signs of: Relaxing of facial muscles, producing rather

staring eyes and gaping mouth. Loss of curves of the back,
which becomes flat against the bed or table. Slight discolora-
tion of the skin, which becomes a waxy-yellow hue, and loses
its pink transparency at the fingertips. (Medical dictionary,
cited in Ball, 1976)
Introduction
Death is one of the most pervasive phenomena of the social, and some-
times is described as ‘the only certainty in life’. Death is indeed often
considered the ultimate biological essentialism; the moment at which
humanity’s obsession with control finds an absolute limit (Giddens,
1991), a view that seems to result in a privileging of realist and materi-
alist approaches over constructivist and idealist treatments. Obviously,
the bodily condition labelled death has a materialist dimension; it is
an event/process that exists and occurs independently of human will,
thought, and interpretation. We cannot reduce death to the way it is
socially and culturally interpreted, but at the same time death remains
loaded with meaning and we cannot detach it from the processes of
social construction (Carpentier and Van Brussel, 2012).
In this chapter, we focus on the social construction of the medicalised
death, referring to a variety of medical decisions made at the end-of-life,
for a high proportion of today’s deaths are indeed directly linked to
medical decision making (see for instance Cohen et al., 2008; Slomka,
1992). The permissibility of medical interventions in the dying process
is subject to fierce political, medical, and ethical discussions, which are
often structured around signifiers such as ‘dying with dignity’ and ‘dying
13
14 Leen Van Brussel
autonomously’ through which the end-of-life is given meaning – often

entailing quite polarised stances towards particular end-of-life interven-
tions such as euthanasia and assisted suicide. In this chapter we deploy
the discourse theory of Laclau and Mouffe (1985), embedded within a
social constructionist research paradigm, as the backbone for a theo-
retical and empirical reflection on the construction of the medicalised
death and the end-of-life.
This chapter first sets forth a theoretical analysis, where discourse
theory offers a lens through which the contemporary debates on end-
of-life decision making can be understood and situated within specific
dynamics of fixity and fluidity, emphasising the contingent while
allowing sufficient space for (temporary) fixation. Concretely, I use a
twofold argument for the contingency of the discourse of (the medical-
ised) death, which is based on two interlocking genealogies that illustrate
the changing meanings of death over time. I first argue that a medical–
rationalist discourse of death has (to a high degree) been replaced by a
medical–revivalist discourse. Secondly, I focus on the historical changes
in the articulation of a medicalised good death and argue that a late-
modern good death is defined dominantly in terms of the signifiers of
control, autonomy, dignity, awareness, and heroism.
The chapter then goes on to illustrate the empirical usability of
discourse theory in the field of thanatology with an analysis of Belgian
print media coverage of three euthanasia cases that derived considerable
media attention in Belgium.
Here, I draw from the theoretical analysis of the articulation of death
and the good death to support an empirical discourse-theoretical anal-
ysis that follows the methodological principles of qualitative content
analysis. The analysis shows how three main discourses – the discourse
of autonomy, the discourse of hedonism, and the discourse of independ-
ence – are imported into journalistic texts and sheds light on the way
these discourses privilege certain articulations of the good death over
others.
Situating Laclau and Mouffe’s discourse theory
In order to analyse the construction of the medicalised death, I draw

from Laclau and Mouffe’s discourse theory (1985), which brings in a
specific definition of discourse. Rather than regarding discourse ‘merely
as a linguistic region within a wider social realm’, Laclau and Mouffe
offer a broader conceptualisation of discourse that ‘insists on the inter-
weaving of semantic aspects of language with the pragmatic aspects of
A Discourse-Theoretical Approach to Death and Dying 15
actions, movements and objects’ (Torfing, 1999, p. 94). This broad defi-
nition of discourse can be described as discourse-as-representation or
discourse-as-ideology, in contrast to approaches that use the discourse-
as-language definition of discourse (Carpentier and De Cleen, 2007,
p. 277). The notion of the big-D Discourse offers another way to posi-
tion Laclau and Mouffe’s approach; in contrast to the little-d discourse
or a language-in-use definition of discourse, it refers to ‘different ways
of thinking, acting, interacting, valuing, feeling, believing, and using
symbols, tools, and objects in the right places and at the right times’
(Gee, 1999, p. 13). At the same time, Laclau and Mouffe’s discourse
theory is specific, given its post-structuralist ontology and its use of
particular concepts to describe the mechanics of discourse.
An especially important concept for our analysis of the discourse of
death is the concept of articulation, which also brings in the logics of
contingency. Articulation is defined as ‘any practice establishing a rela-
tion among elements such that their identity is modified as a result of
the articulatory practice’ (Laclau and Mouffe, 1985, p. 105). For discur-
sive elements that relate to the subject, Laclau and Mouffe use a specific
notion: the subject position, which refers to the way subjects are posi-
tioned within a discursive structure (Laclau and Mouffe, 1985, p. 115).
Crucial to Laclau and Mouffe’s discourse theory is that discourses have
to be partially fixed, since the abundance of meaning would otherwise
make any meaning impossible: ‘a discourse incapable of generating any
fixity of meaning is the discourse of the psychotic’ (Laclau and Mouffe,
1985, p. 112). The articulation of elements produces discourses that
gain a certain, and very necessary, degree of stability, which is enhanced
by the role of privileged signifiers or nodal points. Torfing (1999,
pp. 88–89) points out that these nodal points ‘sustain the identity of a
certain discourse by constructing a knot of definite meanings’. At the
same time, the field of discursivity has an infinite number of elements
that are not connected to a specific discourse. Due to the infinitude of
the field of discursivity and the inability of a discourse to permanently
fix its meaning, then, discourses are always liable to disintegration and
re-articulation, which produces contingency. Through the struggle for
meaning ‘in a field crisscrossed by antagonisms’ (Laclau and Mouffe,
1985, pp. 135–136), and through the attempts to create discursive alli-
ances (Howarth, 1998, p. 279; Howarth and Stavrakakis, 2000, p. 14),
discourses are altered. In contrast, when a discourse eventually saturates
the social as a result of a victorious discursive struggle, stability emerges
and a discourse, or set of discourses, can become hegemonic. When
this is the case, a dominant social order (Howarth, 1998, p. 279), or a
16 Leen Van Brussel
social imaginary, is created, which pushes other meanings beyond the

horizon.
But this stabilisation, or sedimentation, is temporal; there is always
the possibility of resistance, of the resurfacing of a discursive struggle.
Discourse theory and the contingency of death
On the following pages, I adopt Laclau and Mouffe’s discourse theory,

as briefly outlined above, to theorise the construction of death and
the construction of the good death within a medical context. I want
to argue, more specifically, that a medical-rational discourse that was
dominant until the mid-twentieth century, has become rearticulated in
late modernity, when a medical-revivalist discourse started to dislocate
it. This impacted on the construction of the good death and the way the
dying person is positioned within this discourse.
Constructing death: the medical-rational and the

medical-revivalist alternative
In the early middle ages and before, according to Aries (1974, 1981),
death was ‘tame’; a familiar part of life not to be feared. The moderni-
sation process, Aries (1981) argues in his well-known death-denial
thesis, was accompanied by a shift from this tamed death towards an
increasing denial of death. Aries asserts that from the beginning of
the twelfth century, attitudes to death started to transform alongside
the emergence of individualism. Tracing the history of death-related
rituals, he noted another major transformation in attitudes towards
death in the mid-nineteenth century, when the dying patient was –
under the control of the doctor – moved to the hospital to die in an
institutionalised setting rather than at home (see also Lupton, 2010,
p. 48). Drawing on Foucault’s work on medicine and the body, Aries
(1981, p. 562) states that death became hidden, mystified, and ‘driven
into secrecy’.
He argues that the modern forbidden death reflects a ‘brutal revolu-
tion’ in our attitudes towards death and dying (Aries, 1974, p. 86). The
tamed death was supplanted in modernity by a death that was consigned
to medical care, as Illich (1975, p. 180) similarly asserts. Elias (1985,
p. 85) remarks that ‘Never before, have people died so noiselessly and
hygienically as today [ ... ]’. According to supporters of the death-denial
thesis, a new discourse of death thus emerged in modernity, and death
began to be articulated as indecent, wild, dangerous, dirty, and polluting
(Bauman, 1992, p. 136) and needing to be sanitised.
However, arguing that death was denied seems to neglect that this artic-
ulation should be regarded as specific. Starting from this idea, Armstrong
(1987) adopts a more discursive reading to challenge argumentations of
the death-denial thesis, asserting that since the mid-nineteenth century,
there has been a discursive explosion around death and dying, with the
removal of death from the private to the public sphere of which the
death certificate can be regarded as a key discursive symbol. The removal
of the dying to hospitals, Armstrong (1987, p. 652) argues, rendered
death into a publicly controlled event: ‘In the old regime knowledge of
death was restricted to within earshot of the church bell: beyond there
was silence, in the new regime no death was to be unknown.’ Arguably,
it was not the simple replacement of speech by silence; rather, a new
discourse of death emerged, which Walter, Littlewood, and Pickering
(1995, p. 581) summarise as ‘Death is publicly present, but privately
absent.’ Unlike the death-denial thesis, counter-arguments assert that
in the new epoch, a multitude of voices – including those of clinicians
and pathologists – subjected the corpse to in-depth scrutiny to detect
the ‘true’ cause of death (Armstrong, 1987, p. 652). Hence, instead of
characterising the modern period as an epoch of death denial, it should
be described as an epoch when death was constructed in a medical–
rationalist way.
In the modernist logic of medical–rationalism, dying was articulated
as instrumentalist and impersonal; the dying processes became a tech-
nical matter, bereft of their existential and personal significance. Because
of the strong belief in medical progress, death was often regarded as
an extreme example of illness (Seale, 1998, p. 77). Thus, the medical–
rationalist discourse constructed the dying subject as no more than a
carrier or an exemplar of disease.
This construction of death marked an important reconfiguration of
what could and could not be said about death and dying. From the late
eighteenth century, a tendency developed to withhold the prognosis of
imminent death from patients. Physicians and nurses were not trained
to care for the dying and were uncomfortable with the idea of their
patients dying. This led to a situation where the medical staff and the
patient’s family knew the truth about the patient’s condition, but with-
held it from the dying patient (Connor, 2009, p. 3). According to Aries,
this was ‘the lie’ that dominated doctor–patient relationships between
the mid-nineteenth and mid-twentieth century. Again, such a ‘death-
denial’ argument neglects a crucial discursive dimension; a lie exists
only in relationship to a regime of truth (that is the ‘types of knowledge
a society accepts and makes function as true’; Foucault, 1980, p. 131).
18 Leen Van Brussel
Arguably, what is considered a lie in one particular society is not neces-

sarily identified as such in another society, that has another ‘regime
of truth’. To keep death a secret, Armstrong (1987) argues, was legiti-
mate because it was believed that patients relied on the hope that the
secret allowed. The silence was desired by the doctors who did not want
to speak of death because it was distressing to them, and by the patients
who did not want to be confronted with their worst fears (Armstrong,
1987, pp. 653–654). As the regime of truth began to transform during the
late 1950s, the ‘secret’ was exposed as a ‘lie’ (Armstrong, 1987, p. 653).
Arguably, this was a major shift, from believing that it is in the patient’s
best interest to be kept ignorant of his or her condition, to believing that
if patients are to participate in the organisation of their dying process,
they must be told the truth about their condition (Walter, 1994, p. 31).
In many Western countries today, dying patients’ basic human rights
are often considered to be violated if they lack the knowledge to make
their own end-of-life decisions. Patients need the right to know about
their condition and to have control over their dying processes (Kearl,
1989, p. 438).
This new discourse, dominant in late modernity, can be termed the
medical–revivalist death discourse. Within this discourse of death,
death (again) becomes something that should be talked about without
embarrassment. Gradually, the former ‘conspiracy of silence’ regarding
death has been condemned. This has resulted in a shift from the ‘inter-
rogation of the corpse’ to the ‘interrogation of the dying patient’ who
openly talks about his dying process without fearing or denying death
(Armstrong, 1987). From this point, Williams (2003, p. 131) asserts, ‘the
truth of death ceased to be located in dark recesses of the silent corpse,
and instead became embodied in the words and deeds of the dying
patient’. Several practices and organisations have emerged during the
last decennia, which have responded and contributed to the changed
discourse of death. One of these is the provision of modern day hospices
directed towards ‘managing the anguish of the dying patient’ (Prior,
1989, p. 12). Others include legal–political developments such as laws
on euthanasia that stress the value of reflexive and conscious planning
of one’s dying process. This aspect of reflexive and conscious planning
is central to the medical–revivalist discourse of death which emphasises
this planning as a project of self-identity for the dying person (Seale,
2000).
It could be argued, then, that (as in pre-modern societies) death
continues to be a public affair, but, at the same time, the medical institu-
tions have not disappeared, which, according to some critics (Williams,
2003, p. 131; Somerville, 2001), causes death still often to remain hidden
behind the walls of the hospital, or, more recently, the hospice and the
care home. Regardless of this visibility–invisibility debate, it seems to
be clear that a number of revivalist trends that have emerged in recent
decades are seriously challenging the medicalised and rationalised death
and are becoming dominant in shaping contemporary discourses on the
good death (Walter, 1994; Williams, 2003, p. 134).
Constructing the good death

The shift from medical–rationalist discourses to medical–revivalist
discourses has impacted on the evaluative–hierarchical components
that distinguish between good and bad deaths. While some components
of a good death can be considered hegemonic and universalised (such as
a death following a long and fulfilled life, during which children have
been raised and provided for (see Seale, 2004)), there have been some
considerable changes in the meanings attributed to the good death,
which again bears witness to the contingency of the discourse of death.
To show the contingency of the articulation of the good death, we can
use again a genealogical strategy and look at the meaning of the good
death from a historical perspective.
In pre-modernity, death was not something people feared, nor was
it seen as alien, wild, and dangerous. Rather, death was familiar; it was
a part of life. The ideal of a peaceful death in the company of family
and friends and at peace with God corresponds to the pre-modern
attitude to death, which Aries described as the tamed death (Walters,
2004, p. 405). The process of modernisation made death something
to be medically prevented, and its occurrence came to be regarded as
failure (Walters, 2004, p. 405). As already discussed, there are opposing
theories regarding modern attitudes towards death. Whereas Aries (and
also Bauman, 1992) describe a privatisation, which resulted in a social
denial of death, Armstrong argues that death became more and more
public after the late eighteenth century. Among these opposing views,
however, there is agreement on the idea that death became highly medi-
calised in the modern period. This medicalisation was accompanied by
a new discourse of (the good) death characterised by the withholding of
the prognosis of imminent death from the patient. Thus, a modern good
death was foremost a death that happened without the patient noticing
it, such as dying quietly in one’s sleep.
From the second half of the twentieth century, the discourses on the
good death change. According to Walters (2004), death is no longer
a taboo subject in late-modern societies. Several authors describe this
20 Leen Van Brussel
assumed ‘de-tabooing’ with reference to the death-awareness movement

(see, for instance, Bryant, 2003, pp. 53–54). By the late 1990s, the death
awareness movement had become increasingly institutionalised, not
only through the influence of palliative care on the medical world and
discussions on the right to die, but also through the organisation of
large-scale events concerning death-related topics. Moreover, the new
awareness – or the revival – of death that is argued is reflected in the
mass media, where death features as a main theme in films, TV series,
plays, and novels (Bryant, 2003, p. 54; Walters, 2004, p. 405). While
Walters (2004) asserts that a late-modern good death is thus something
that can (again) be discussed and imagined openly, the hegemony of
the late-modern revivalist death discourse is not total; its dominance
continues to be challenged by medical–rationalist discourses of death.
Despite these challenges, the revivalist discourse is becoming generally
more dominant in constructing the good death and opposing some
core values of the modernist good death. It could be argued that this
revivalist discourse is constructed basically around two groups of nodal
points: control and autonomy; and awareness and heroism.
Control and autonomy

One of the key differences between (pre-)modern and late-modern
conceptualisations of the good death is the element of control brought
by medical science, the price of which has been the creation of a powerful
medical system that takes decisions about the ‘bodies’ of its patients.
Specific to the medical–revivalist discourse of late modernity is the artic-
ulation of the subject position of the dying patient’s person as someone
in control of her/his own death, without detaching it completely from
the medical field. Indeed, it is believed in late modernity that if individ-
uals ‘are to make their own decisions about what remains of their lives,
they must be told the truth about their condition’ (Walter, 1994, p. 31).
A lack of decision-making power in this regard is considered a violation
of the dying person’s basic human rights (Kearl, 1989, p. 438). This does
not mean that control over death is total and that all social anxieties
disappear. Somerville (2001, pp. 11–12, 37), for example, asserts that the
need to control death – referring mainly to the practice of active eutha-
nasia – rests on an attitude of deep fear and denial. The contemporary
idea of a death that is autonomously controlled allows it to be combined
with the concept of dignity. In late-modern Western societies, dignity
is mainly defined in terms of independence, autonomy, and control,
especially (but not exclusively) within the framework of the right-to-die
movement. It is regarded as highly desirable for the dying person to
be free of excessive pain and to be in a state of awareness in order to

preserve independence. The late-modern emphasis on autonomy and
control is closely connected to a civilised body discourse that values self-
mastery and self-care. As Lupton (2003, p. 57) argues: an ideal (dying)
body is a body which is ‘tightly contained, its boundaries stringently
policed, its orifices shut, kept autonomous, private, and separate from
other things and other bodies’.
Despite the centrality of the signifiers of autonomy and control in
contemporary articulations of the medicalised good death, these same
nodal points are very much surrounded by discursive conflict and
struggle; they hence act as floating signifiers (Laclau and Mouffe, 1985,
p. 117) that are ‘overflowed with meaning’ (Torfing, 1999, p. 301) and
can have different meanings within different contexts and discourses.
While the discursive project of the right-to-die movement emphasises
the right of the dying patient to control the exact timing of death, the
discursive project of the palliative care or hospice movement focuses on
control over the symptoms that accompany the dying process; stressing
the importance of fulfilling patients’ wishes about how and where,
rather than when, they choose to die.
The discourse of the palliative care or hospice movement is character-
ised by frequent references to the ideal of a ‘natural’ death: ‘a gradual
passing away unmarred by fear, denial or technological encumbrances’
(Banjeree, 2005, p. 4). Emphasising the ideal of the natural death, the
hospice moment focuses less on independence, autonomy, and aware-
ness in defining dignity (Carpentier and Van Brussel, 2012; Van Brussel
and Carpentier, 2012).
Awareness and heroism

In order to control one’s own (good) death, it is deemed necessary to
have knowledge about one’s condition. This implies that the subject
position of the dying person is articulated as being aware and avoiding
a state of denial. In contemporary Western societies, an open aware-
ness is regarded as highly desirable. This open awareness refers to open
communication among patient, the family, the doctor(s), and the
professional carers (Kearl, 1989, p. 428). Open awareness is required,
first, for the dying person to make his/her own end-of-life decisions
in an autonomous way (Walter, 1994, p. 31). Second, being aware of
imminent death, the dying person can conduct reconciliations with
loved ones, make confessions, and (re)tell and sometimes reconstruct
personal biographies. In this way, the revivalist dying process becomes
‘a case study in the reflexive formation of a profoundly individualistic
22 Leen Van Brussel
form of self-identity, of the sort described evocatively by Giddens’

(Seale, 2004, p. 967). The ideal of an aware death is closely connected
to Seale’s (1995, 1998) notion of the heroic death. According to Seale,
a heroic death is highly valued in most Western societies. In a late-
modern end-of-life context, heroism becomes articulated as the deploy-
ment of skilful efforts of emotional labour. The capacity to gather
support from family and friends and to make emotional progress in the
process of denying, fighting, and accepting death (Seale, 2002, p. 185)
are crucial aspects of what Seale (1998, p. 92) describes as the ‘inner-
directed heroics of the self’.
This new sort of heroic drama defines the subject position of the
dying person as somebody who faces the inner danger and engages in
an arduous self-search (Seale, 1998, p. 92), and, eventually, after initial
reactions of fear, shock, anger, or unfairness, demonstrates great courage
in the eventual facing up to the final threat: death (Seale, 1995, p. 599).
This ‘inner-directed heroics of the self’ is especially present in the
project of the hospice movement, where death is often seen and spoken
of as a journey (Banjeree, 2005, p. 8). The hospice movement focuses
on the heroism of dying naturally and of coping with the dying process
while stressing the right of every dying person to be surrounded by a
caring community. It is argued that this delays social death for as long
as possible until biological death occurs (Seale, 1995). The right-to-die
movement acknowledges the importance of care, but argues also that
the care of other people may not be enough to overcome the suffering
involved in some forms of death. As Seale (1995, 1998, p. 190) argues,
the right-to-die movement uses a different articulation of some of the
core values of revivalism; a request for euthanasia is a statement that the
care offered by other people is not enough to overcome suffering or that
a different form of care (in the form of medical assistance with dying)
is needed.
Articulations of the good death in Belgian media coverage
The remainder of the chapter aims to analyse the articulation of the

good death in the media coverage of three euthanasia cases, and simul-
taneously illustrate the usability of discourse theory in the analysis of
empirical material. In the case at hand, I look at media texts about eutha-
nasia as materialisations of discourses on death and the good death,
which have been identified above. While the choice to analyse media
representations is not compulsory and other empirical entry points, for
instance the analysis of legal texts, medical practices etc. – are equally
legitimate, there is a reason why analysing media contents is particu-

larly relevant.
Indeed, media texts draw from ‘existing ways of making sense of the
world’ (McKee, 2003, p. 46), and hence are important cultural resources
that tell us something about the broader discursive framework in which
they operate. Rather than being the origin of discourses, which then
become further distributed throughout the social, media are an insepa-
rable part of the social. In this line of thinking, media bring into circula-
tion a variety of already existing discourses, making them both visible
and tangible.
By means of a discourse-theoretical analysis (DTA) (Carpentier and
De Cleen, 2007; Carpentier, 2010), I aim to answer the research ques-
tion that inquires which constructions of the good death and of the
subject positions of the dying persons the Belgian newspaper coverage
offers. A discourse-theoretical analysis (and especially its second (empir-
ical) phase) combines the basic principles of qualitative analysis – as
captured, for instance, by grounded theory (Charmaz, 2003, 2006) –
with the conceptual framework of discourse theory. As argued elsewhere
(Carpentier, 2010), the concept of the ‘sensitising concept’, referring to
those concepts that guide researchers in ‘what to look for and where
to look’ (Ritzer, 1992, p. 365), acts as a methodological bridge between
grounded theory and discourse theory. More particularly, discourse
itself becomes the primary sensitising concept. The discourse-theoret-
ical framework (including concepts such as articulation, nodal points,
subject positions, and hegemony), strengthened by the case-specific
theoretical framework (the modern medical–rationalist discourse, the
late- and post-modern revivalist discourse, and their nodal points of
control, autonomy and dignity, and awareness and heroism) become the
secondary sensitising concepts for a textual analysis based on the meth-
odological–procedural principles of grounded theory (including open-
ness of interpretation and the cyclical nature of the relation between
theory and analysis).
I have analysed the coverage in three mainstream Belgian (Dutch-
speaking) newspapers (the quality newspapers ‘De Morgen’ (DM) and ‘De
Standaard’ (DS) and the more popular newspaper ‘Het Laatste Nieuws’
(HLN)) about three prominent euthanasia cases that attracted consid-
erable media attention in Belgium, as these cases can be regarded as
moments of increased discursive struggles around the meaning of dying
‘well’. In 2008, the euthanasia of the well-known Belgian writer, Hugo
Claus – the first case analysed here – resulted in fierce societal debates.
Claus was not terminally ill, but chose death because he was suffering
24 Leen Van Brussel
from an early form of Alzheimer’s disease. The debate on euthanasia

was further inflamed by a second case in the same year. This was the
Belgian politician, Marcel Engelborghs, who had incurable and terminal
cancer and chose euthanasia. In 2009, the 93-year old, non-terminally ill
Amelie Van Esbeen, who was suffering from a range of geriatric ailments,
requested euthanasia. Her struggle for her right to die stirred up debate
on end-of-life decision making and the (limits to) patient autonomy.
Her request for euthanasia was rejected on the grounds that she was
neither incurably ill nor suffering unbearably; her response was to go on
hunger strike to protest the decision.
The final corpus comprises 126 articles (84 articles on the cases Claus
and Engelborghs (articles often deal with both cases at the same time),
and 42 articles on the case Van Esbeen), and includes a number of ‘press
genres’ (Bell, 1991, p. 13): regular news items, commentary, reportage,
and letters to the editor. This allows us to include the newspaper’s ‘offi-
cial voices’, which ‘express an opinion, sum up the issues and make a
moral judgement or decision upon the issue’ (Lupton, 1994, p. 148), as
well as a diverse – although edited – variety of opinions from the news-
papers’ audiences.
Constructing euthanasia as a good death and celebrating the

‘heroic death’
The discourse-theoretical analysis of the selected media texts points in
the direction of a specific articulation of the good death. Euthanasia
as a specific end-of-life decision is constructed as a particular form of
dying well; it is articulated as a ‘heroic’ way of dying, where the hero
is defined in a rational way – emphasising his braveness in choosing to
die before illness and deterioration take over. This type of heroic death
is somewhat different from the heroic death as defined by Seale, as it is
very much articulated in terms of rationality rather than in terms of an
inner emotional journey. The discursive construct of the rationally dying
hero is linked to the dominance of right-to-die ideals and is achieved by
importing a series of discourses into the media coverage. More specifi-
cally, three main discourses through which the good death (with their
respective nodal points and subject positions) becomes constructed have
been identified; the discourse of hedonism, the discourse of mental and
physical control and independence, and the discourse of autonomy.
The discourse of hedonism

A first discourse that is imported into the coverage of the euthanasia
cases is that of hedonism. Whereas the focus on conflict between the
patient and the medical system in the coverage of Van Esbeen impedes
the importation of the discourse of hedonism, the focus on the period
prior to the death and on the actual euthanasia ‘event’ in the coverage
of Claus and Engelborghs allows for and facilitates the construction of
the hedonic death, where notions of enjoyment and happiness as well
as activities associated with ‘the hedonist’ such as drinking and dining
become associated with the choice for euthanasia. It is indeed the choice
for euthanasia that allows the ‘bon-vivant’ (reportage, HLN, 8–9 March
2008) to have a good death. One article about the euthanasia of Claus
and Engelborghs, entitled ‘Euthanasia should not be horrible’, opens as
follows:
Dining extensively and laughing with friends to encounter death in full

awareness. Hugo Claus did it on Wednesday, and the alderman Marcel
Engelborghs earlier this month. They could have postponed their death,
but they didn’t want to. To not lose anything of awareness, life enjoy-
ment and dignity. (Regular news item, HLN, 21 March 2008)
The quote above illustrates the centrality of the nodal points discussed
earlier in this chapter. It is above all the nodal point of awareness that is
central to the discourse of hedonism; despite the rare use of the actual
word ‘awareness’ (or its derivates), the analysis shows several assump-
tions that construct awareness as a key aspect of a good death. One way
in which an aware death is constructed as a crucial part of a good death
includes the assumption that a conscious planning of one’s own death
allows the dying person to say goodbye to his family and friends in a
‘proper’ way. Indeed, the aware and active planning of their own deaths
allowed Marcel Engelborghs and Hugo Claus ‘to enjoy their lives until
the very last day’ (Regular news item, HLN, 21 March 2008). Awareness
is articulated with life enjoyment and dignity, which sometimes comes
with an implicit disciplining of the ‘other’ dying (or living) subject who,
by the increasing dependence generated by dementia, loses the possi-
bility of a hedonic death. Indeed, euthanasia is often constructed as the
only way to a ‘good death’; as the best – and perhaps only – choice for
the hedonist.
The subject position of the hedonic dying patient is further constructed
in a number of journalistic narratives, sometimes through the voice of
the dying person himself: ‘“I lived hard and well. I was a party type,
loved to go out to dinner and travelled a lot” [ ... ] “I’ve had many girl-
friends, but never have I wanted to give a woman the impression that I
wanted to stay with her”’ (Reportage, DS, 3 May 2008).
26 Leen Van Brussel
The dying patient is not only constructed as a hedonist, but also

as highly rational – not giving in to emotions of fear. Encouraged by
the tendency of journalism to construct ‘heroes’, the coverage of the
euthanasia of Engelborghs emphasises the heroic facing of death: ‘“Am
I relaxed or what?” He laughs rhetorically, “I am really not afraid of
dying. I never feared it, and at this moment I still don’t”’ (Reportage,
HLN, 3 June 2008).
The discourse of hedonism as present in the analysed media texts is
embedded within a broader societal context where a discourse of death-
revivalism is becoming increasingly dominant. Not only is the high
visibility of personalised euthanasia cases in the media as such an illus-
tration of this dominance, also the way death is constructed as familiar,
not to be feared, demonstrates the way the analysed media texts func-
tion as materialisations of more encompassing death-revival discourse.
In the analysed coverage, more concretely, we see how the dying subject
is represented as someone who is central to his own dying process, not
only because he is physically involved, but also because it becomes an
opportunity for self-identity, where the dying patient dies in line with
the way he lived. Dying, arguably, should not be horrible, it can equally
be a final expression of hedonism – occurring after a final ‘farewell
dinner’ and taking place ‘in friendship and laughing’ (Reportage, HLN, 3
July 2008). It is at the same time clear that the analysed media coverage
privileges right-to-die articulations of the good death over hospice or
palliative care articulations, constructing euthanasia or the self-chosen
death as the ultimate hedonic death.
The discourse of independence and control

A second discourse imported into the coverage of the euthanasia cases
is that of mental and physical independence and control. A key signifier
here is that of ‘dignity’, which is associated in the analysed coverage
with the ideals of the ‘civilised’, that is, stringently controlled mind
and body and the ‘authentic’ body–mind relationship, where the body
reflects the inner-self, again pointing in the direction of a dominance of
right-to-die (rather than hospice or palliative care) articulations of the
good death.
In the coverage of Engelborghs, the deterioration of the body is
constructed as a threat to dignity. The articulation of physical deteriora-
tion as limiting the possibility of dying with dignity is often imported
into the coverage by directly quoting the dying patient. For instance: ‘I
will not deteriorate, will not suffer, will not become dependent, will be
able to die with dignity.’ In another article, Engelborghs is again quoted:
‘Then I can go to palliative care and be dependent, continue to suffer

and deteriorate and be a burden to the whole society’ (Reportage, HLN,
3 July 2008). In both quotes, a discursive logic of difference is created,
opposing deterioration and dependence to dying with dignity. Not only
is the deterioration of the body discursively constructed as an undigni-
fied way of dying, but also the decline of mental awareness is constructed
as a threat to dignity. For instance: ‘The certainty that I will get eutha-
nasia and that I will die with dignity, mentally healthy, has given me
peace of mind’ (Reportage, HLN, 3 August 2008). By labelling the choice
for euthanasia as ‘brave’ and ‘courageous’, dying before losing control
and independence is positively evaluated and even elevated as a form
of ‘heroic death’. In similar vein, the coverage of Hugo Claus constructs
Alzheimer’s disease as a threat to the patient’s dignity. In one article it
is, for instance, assumed that euthanasia was the only end-of-life deci-
sion allowing Claus to die with dignity: ‘Because he left us as a shining
star, just in time, before he collapsed into a clumsy black hole’ (Opinion
piece, DM, 20 March 2008).
The coverage of Claus and Engelborghs makes it clear how the iden-
tity construction of an ‘extraordinary’ man, of people whose political
or artistic merits endow them with ‘great dignity’, comes with certain
assumptions about the way ‘great men’ die with dignity, that is before
being affected by illness and deterioration. Losing consciousness,
physical abilities, and as a result independence, become represented as
aspects of a bad dying process. In the cases of Hugo Claus and Marcel
Engelborghs, the voices of the readers explicitly express the construc-
tion of such an undignified and bad death:
Demented people are very often a burden to others, also to their own
family. If I ever get the chance to opt for euthanasia before I don’t
know I exist, I would immediately do so. Very brave what Claus did.
(Letter to the editor, HLN, 22 March 2008)
In the coverage of Van Esbeen, finally, the declining and deteriorating

body is constructed as a threat to a dignified death because the body
can no longer represent the ‘authentic self’ – that of a proud and inde-
pendent woman who ‘lived alone until the age of 88 and took care of
herself’ (Regular news item, DM, 2 April 2009). Indeed, the increasing
dependence of Van Esbeen on other people is constructed not only
as incompatible with her former self, but also as deeply shameful:
‘[ ... ] decreased vision, hearing disorders, incontinence, and a limited
independence. And all of that for a woman who had been extremely
28 Leen Van Brussel
independent and very well surrounded during her whole life’ (Regular
news item, DS, 6 April 2009).
What is potentially problematic is that these representations go hand
in hand with the construction of euthanasia as the only possibility for a
dignified death, which renders a palliative care based death an undigni-
fied death. The dominant articulation of dignity is only minimally chal-
lenged by an alternative, palliative care variation, which mainly comes
from the medical field where voices of representatives of the medical
field resist the articulation of dementia as undignified:
Dementia should not only be misery. Our sector works very hard to
offer everyone a dignified existence. (Letter to the editor, DM, 25
March 2008)
The discourse of autonomy

A final discourse that is imported into the coverage of the selected eutha-
nasia cases is that of autonomy. Whereas the above-discussed construc-
tion of control and independence as components of a good death relates
to the autonomous functioning of the mind and the body, the discourse
of autonomy discussed below mainly is about autonomy in terms of
decision making.
The ideal of autonomy is present in all three cases, where a posi-
tive evaluation of controlling one’s own death and to make one’s own
end-of-life decisions in an autonomous way shows the hegemony of
the right-to-die variant of the revivalist discourse and its nodal point of
autonomy. The ideal of autonomy is most explicitly articulated by the
voice of the readers of the newspapers. For example:
Of course I respect his choice to die. I find that a very great deed.
(Letter to the editor, DS, 3 June 2008 – Hugo Claus)
and
The most important thing about euthanasia is not death itself, it is

knowing that as a human being, you have the choice, the possibility,
the freedom. (Letter to the editor, HLN, 3 August 2008)
The ideal of dying autonomously is not only present in letters to the

editor; similar, yet often more subtle constructions are present in other
press genres. The frequent use of agency-indicating signifiers such as
‘wanting’, ‘deciding’, ‘choosing’, and ‘determining’ emphasises the
autonomy of Claus, Engelborghs, and Van Esbeen (see for instance

regular news item, HLN, 5 March 2008 – Engelborghs; opinion piece,
HLN, 20 March 2008 – Claus; opinion piece, DM, 20 March 2008 – Claus;
reportage, DS, 2 April 2009 – Van Esbeen), and the way such signifiers
are used often results in a subtle celebration of autonomy, as heralding
the possibility of a ‘good’ and even ‘joyful’ death. For instance: ‘He left
us the way he wanted to. When he fixed the date of his death, he didn’t
say goodbye, he celebrated goodbye’ (Regular news item, DM, 31 March
2008).
Autonomously determining the moment of death is often constructed
as a brave, courageous, and exceptional act. In the case of Claus, this
exceptionality is created through the construction of an identity of the
‘rebel artist’, which is present in a number of articles. For instance, by
combining the statement ‘He has always made his own decisions, until
the last goodbye’ (opinion piece, HLN, 20 March 2008), with an appreci-
ative, admiring description of Claus (‘A universal artist, painter, sculptor,
director, and cineaste’), autonomous end-of-life decision making is
constructed as desirable, but also as a ‘courageous’ need. Because of
Claus’ celebrity, his autonomous choice of euthanasia is represented as
unusual and not reserved to everybody. Rather, euthanasia requires ‘an
autonomous mind’, ‘an example’, ‘a master’, ‘a rebel’ (HLN, 31 March
2008; DM, 20 March 2008). Also the coverage of Engelborghs is often
surrounded by a sphere of admiration, suggesting the choice for eutha-
nasia to be an extraordinary one. For instance:
The terminally ill alderman Marcel Engelborghs (61) has never been
more determined than on the moment he chose to die when he
wanted to, how he wanted to. And he remained determined until the
very last. (Regular news item, HLN, 27 December 2008)
In the coverage of Van Esbeen, finally, the ‘ordinary’ dying patient is

discursively constructed as a ‘heroic victim’. This twofold subject posi-
tion is first of all created by covering Van Esbeen’s struggle to die in a
pity-inducing way: ‘“I want to die. And rather today than tomorrow”,
Amelie entrusts us, hooked to the bed of her too small room’ (Reportage,
DS, 23 March 2009). In so doing, Van Esbeen is represented as a ‘deter-
mined’ woman (regular news item, DM, 2 April 2009) whose only wish
is ‘to die’ (reportage, DS, 23 March 2009), while the medical system is
represented as a threat to the patient’s autonomy. Secondly, the heroism
of Van Esbeen is emphasised, focusing on the patient’s victory over the
medical system: ‘Eventually, Amelie went on a hunger strike and threw
30 Leen Van Brussel
the media into gear to point to the gap in the legal system. Successfully
on 1 April, this brave lady acquired the end that she deserved’ (Regular
news item, HLN, 25 December 2009).
Conclusion
While discourse theory and discourse-theoretical analysis have above

all been applied in the study of political–social realities, death plays a
too significant role within the social to be excluded from the analytical
gaze of discourse theory (Carpentier and Van Brussel, 2012). However,
the discourse-theoretical approach to death and the end-of-life adopted
in this chapter by no means had the ambition to explain the entire
complexity of the dying process. A discourse-theoretical approach does
not, for example, offer a framework to study the psychological and
sociological aspects of the – often disruptive – human awareness of
inevitable mortality (Bauman, 1992). But a discourse-theoretical frame-
work, with its focus on the construction of meaning within a sphere of
a struggle for hegemony, embedded within the dynamics of fixity and
fluidity, does seem to be well suited for analysing the construction of
the master–signifier of the good death and how the subject position
of the dying person becomes articulated within this construction. In
this chapter, I have drawn from Laclau and Mouffe’s discourse theory
to show how the impact of and the changes within the medical field
affect the articulation of the discourse of death, first through a medical–
rationalist discourse of death and, later, shifting to a medical–revivalist
discourse, which structurally alters the way we think about death, the
good death, dying, and the dying person. Answering to the methodo-
logical deficit in discourse theory as identified by a number of scholars
(Torfing, 1999; Zienkowski, 2012; Howarth, 2005; Glynos and Howarth,
2007), I also attempted to illustrate the usability of discourse theory in
the analysis of concrete empirical material. In this chapter, discourse-
theoretical analysis has been adopted as method for the analysis of
media texts. Defining media texts as specific materialisations of more
encompassing systems of meaning, I identified three key discourses
imported into the coverage of three prominent euthanasia cases; a
discourse of hedonism, a discourse of control and independence, and
a discourse of autonomy. It has been argued that the coverage of these
three cases articulates euthanasia as a good death in specific ways; privi-
leging the right to die of the dying person over processes of end-of-
life care, thereby celebrating the hedonic dying person who (fearlessly)
autonomously chooses to die before becoming dependent on care of
others and before losing awareness, while constructing ‘other’ ways of

dying as ‘bad’ or ‘undignified’. We need to end this chapter by making
some crucial reflections on the specificity of the sample. First of all, we
should not forget that although euthanasia is under certain conditions
legal in Belgium, it also remains contested and subject to ongoing strug-
gles and debates. The newspaper coverage, and its almost unequivocal
support for the right to euthanasia, can only be seen as a contribution
to the attempted hegemonisation of the right to die, within the already
hegemonic medical–revivalist discourse. Moreover, media logics such as
intimisation and dramatisation make the analysed sample specific in
the sense that they tend to privilege the extraordinary over the ordinary,
and the conflictual over the consensual. Conducting a discourse-theo-
retical analysis on other texts, for instance medical texts or legal texts,
may point in the direction of other articulations of the good death.
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2
Studying Illness and Dying through
Constructivist Grounded Theory
Linda Liska Belgrave and Kathy Charmaz
Introduction
The sociological study of death and dying and the grounded theory
method made a simultaneous debut. Barney G. Glaser and Anselm L.
Strauss’s (1965) book, Awareness of Dying, brought death and dying
into sociological purview, and put the experience of death and dying
on the agenda of grounded theorists. Any review of death and dying
through using grounded theory methodology must therefore begin with
this study of the social organisation of dying in US hospitals. Glaser
and Strauss demonstrated that sociologists could bring new analytic
insights to the study of death and dying, thus contributing to both
their discipline and professional practice. Subsequently in 1967, the
authors published their initial statement of their methods for studying
dying, The Discovery of Grounded Theory: Strategies for Qualitative Research.
This book profoundly influenced the social scientific study of illness,
dying, and death, and rapidly spread qualitative methods far beyond
the confines of sociology. Glaser and Strauss’s argument in the Discovery
book not only answered numerous criticisms of qualitative research but
also set forth a new agenda for qualitative inquiry.
Grounded theory is a systematic method of building inductive theo-
ries from data to construct middle-range theories. The method involves
simultaneous data collection and rigorous scrutiny and development
of the researcher’s emerging theoretical categories. Constructivist
grounded theory, our focus here, is a contemporary version of the
method. Constructivist grounded theory adopts methodological strate-
gies of the original version but shifts its epistemological foundations
and integrates recent methodological developments in qualitative
inquiry.
34
Studying Illness and Dying 35
In this chapter, we want to demonstrate how constructivist grounded

theory may deepen our understandings of illness, dying, and death. We
begin with a brief overview of the origins and logic of grounded theory
before discussing constructivist grounded theory. We then introduce
symbolic interactionism, the theoretical perspective with which the
method is most associated. Next we discuss illustrative studies in death
and dying and focus on novel insights yielded by grounded theory,
particularly constructivist approaches. Finally, we explicate devel-
oping an analysis of disclosing serious illness to show how construc-
tivist grounded theorists work with data. As our examples attest, many
grounded theory studies of illness, death and dying address individual
experience (see Corbin and Strauss, 1988; Carricaburu and Pierret, 1995;
Ciambrone, 2007; Hinojosa et al., 2008). However, we contend that
researchers can use the method to address larger social issues and offer
some suggestions about how to do it.
The emergence of constructivist grounded theory
Constructivist grounded theory developed from the original statement

that Glaser and Strauss first articulated in The Discovery of Grounded
Theory. The constructivist version (Charmaz, 2000, 2014) aims to
preserve useful grounded theory strategies and to integrate recent devel-
opments in qualitative inquiry such as reflexivity and co-construction
of data. Thus, constructivist grounded theory shares Glaser and Strauss’s
notions that: (1) systematic, comparative, inductive qualitative research
can generate theory; (2) qualitative research must be judged on its own
canons; (3) the purpose of grounded theory is theory construction; and
(4) using the strategies of grounded theory can raise the theoretical level
of the emerging analysis.
Constructivist grounded theory differs from earlier versions by chal-
lenging positivistic assumptions in Glaser’s (1978, 1998) version of
grounded theory and in Strauss and Corbin’s (1990, 1998) first two
editions of Basics of Qualitative Research. The constructivist version
brings subjectivities into inquiry and attends to participants’ language
use, liminal assumptions, and situations. Constructivist grounded
theory can thus play a significant role in the field of thanatology, as
it goes deeper into participants’ meanings of illness, dying, and death
than earlier versions and acknowledges the researcher’s interpretive
role in understanding and representing these meanings. Constructivist
grounded theory emphasises the interactive nature of the method as well
as its inductive beginnings, iterative form, and comparative analyses.
36 Linda Liska Belgrave and Kathy Charmaz
The researcher’s interactions not only occur with participants but also
arise through active scrutiny of the data and the continued interroga-
tion of the emerging analysis. All these interactions give substance and
form to the subsequent interpretive analysis and are also particularly
important in the study of illness, dying, and death.
Yet these interactions remain unmarked and unexamined in many
studies as well as in Glaser and Strauss’s early grounded theory studies.
For example, they analyse their assistant’s fieldnotes to study a dying
trajectory in their case study, Anguish, (Strauss and Glaser, 1970) of Mrs
Abel. They portray her largely from the staff viewpoint as a trouble-
some dying patient who continually tries to increase her pain medi-
cation. Mrs Abel’s viewpoint and existence remain under-examined. A
constructivist approach, in contrast, would begin by learning about Mrs
Abel’s experience from her standpoint. This starting point might result
in portraying Mrs Abel as a patient who tried to control her treatment
and whose subsequent conflicts with staff left her isolated while dying.
The constructivist approach would result in bringing the structure of
care and its social locations into purview.
Like Bryant (2002) and Clarke (2005), Charmaz acknowledges that the
researcher and the research situation are imbedded in both the process
and products of inquiry. Thus, standpoints and starting points shape
the direction of inquiry and standpoints may change throughout the
research process. Constructivist grounded theory assumes that social
reality is multiple, processual, and constructed. The researcher’s posi-
tion, privileges, perspective, and interactions enter the research situ-
ation and contribute to its construction (Charmaz, 2009a). Earlier
versions of grounded theory directed researchers to be neutral observers
with no preconceptions about their research. Ironically, this position
allows ignoring assumptions about the world as well as research topics.
Constructivist grounded theorists question earlier notions of discovery,
objectivity, and the quest for decontextualised generalisations separate
from time, place, social conditions, and the situation of inquiry.
Unlike Glaser and Strauss, constructivist grounded theorists treat
data collection and representation of participants as problematic and
complex – and a significant part of inquiry. Constructivists view theory
as constructed rather than discovered, data as defined rather than self-
evident, the meanings of data as multiple rather than singular, and
analyses as located in time, space, situation and the research process.
Hence, constructivists remain sceptical about theoretical generalisations
based on little data that claim to be abstract of time, place, and the
conditions of their production. Instead, constructivists aim to develop
contextualised analyses that reveal differences and the range of variation

of the concepts (Charmaz, 2008, 2014; Thornberg and Charmaz, 2014).
For these reasons, we see constructivist grounded theory as holding
considerable potential for also situating and refining studies of illness,
dying, and death.
Symbolic interactionism
Theoretically, constructivist grounded theory is tightly linked to
symbolic interactionism, which makes it worthwhile to elaborate more
on this tradition and its thanatological applications. A key premise of
symbolic interactionism is that meaning is constructed in and through
human interactions that take place in the social world. Bridging the
personal and the social, symbolic interactionism helps us to compre-
hend the apparent contradiction that experiences of illness, dying,
and death are simultaneously intensely personal and inherently social.
More concretely, symbolic interactionism reveals the social roots of the
personal and has the potential to connect experiential/micro and insti-
tutional/structural/macro levels. Symbolic interactionism allows us to
analyse human beings, their behaviour, and their creations by looking
at how they generate, modify, and reaffirm meanings through social
interaction. This perspective derives from George Herbert Mead (see
Mind, Self, and Society, 1934) and the American pragmatists (particu-
larly William James, John Dewey, and Charles Horton Cooley). It is a
process-oriented, radically social approach to understanding the essen-
tial connectedness between embodied individuals and society. Today
scholars from disciplines as diverse as sociology, nursing, and commu-
nications use symbolic interactionism, sometimes explicitly, sometimes
through the unacknowledged incorporation of key concepts of the
perspective. A number of these concepts of symbolic interactionism are
particularly relevant to the research field of thanatology.
Meaning, a first key concept, is social, interactional and inherently
tied to behaviour. Mead’s student and major interpreter, Blumer (1969)
contends that people act toward things according to the meanings these
hold for them, meanings that emerge in interaction and change through
interpretive processes. Key meanings tied to illness, dying, and death are
sometimes contested and can rapidly change at the societal (and insti-
tutional) level. The meanings tied to illness, death, and dying are hence
embedded in complex interplays between the personal, the interactional,
and the social. Like meanings, human selves are not inherent, but arise
through social interaction. The self is perhaps the most studied of the
core concepts to have come from Mead’s theory (Athens, 2005). The
self is both a social structure and reflexive process which spurs human
agency (Weigert and Gecas, 2003). Illness, dying, and death can chal-
lenge or threaten selves, while providing a potential context for their
growth or transformation (Charmaz, 1991). Because technology is at the
core of illness and dying, Clarke and Star’s (2003) recommendation that
we treat elements of the built/created environment as actors is especially
important for this field.
Temporality, a third important concept of symbolic interactionism, is
fundamental to the study of illness, dying, and death as past selves are
sometimes lost and futures are threatened. The symbolic interactionist
perspective sees the past and future as coming together in the present.
That is, we see the past through the eyes of the present, reinterpreting
it through the lens of what has happened between the two. In the same
present, we act with an eye towards the future, anticipating that future
(Mead, 1932; Maines et al., 1983).
Connecting meanings and interactions at the interpersonal level to
meanings, processes, and power at the macro level is clearly necessary
for research on dying patients caught up in health care settings, indi-
viduals battling the insurance industry to receive treatment, or families
dealing with a legal system that defines life and death. Symbolic inter-
actionism has untapped potential for doing exactly this. Mead offered
some direction when he talked of social institutions as special forms of
interaction, with language supporting institutional hierarchies (Athens,
2005). Others suggest that we examine society as consisting of patterns
of interaction, giving us a framework to examine interpretive action
at various levels of analysis (Katovich and Maines, 2003). Studies of
biomedicalisation provide persuasive examinations of constructed proc-
esses and resulting meanings/definitions and consequences in various
fields of health (Clarke et al., 2010). Thus, symbolic interactionism
provides powerful conceptual tools for the examination of crucial issues
in illness, dying, and death.
Dying, death, and grieving through the lens of

grounded theory
Barney G. Glaser and Anselm L. Strauss’s research sets the agenda for
looking at grounded theory contributions in the area of illness, dying,
and death. Their ground-breaking substantive theory ([1965] 2009) of
defining expectations of death explains how service providers view
and treat patients as well as their status relative to patients. Similarly,
patients’ expectations determine how they see themselves and their
relationships with service providers (and family). Glaser and Strauss tied
different patterns of professionals’ and patients’ expectations to local
structural conditions, such as the staff’s efforts to influence patients’
access to knowledge. Despite advanced medical technology, sophisti-
cated diagnostic tests, and recognition of patients’ rights to knowledge,
these processes of defining remain social and interactional. Although
Glaser and Strauss ([1965] 2009) examined varied interactions among
patients, staff, and family members, contemporary work often focuses
on only one or two actors, sometimes without context. Recent grounded
theory research in death and dying addresses issues such as treatment
decisions involving possible death, decisions regarding organ donation,
and experiences of terminal illness and the end of life.
Let us take a closer look at the way scholars have adopted grounded
theory perspectives, including constructivist, to address issues like those
listed above.
A first example is Gwen Rempel and Margaret Harrison’s (2007)
constructivist grounded theory approach to how new surgical tech-
nology providing a controversial treatment for infants born with a
threatening heart disease left parents without any guidelines. As part of
their research, the primary researcher shared her developing interpreta-
tions of parents’ stories, and explicitly discussed their mutual roles in
theory construction. Subsequently she developed a model that goes well
beyond ‘safeguarding the child’s precarious survival’ (p. 828) to include
protection of parental survival, individually and as a couple. A second
example is Thalia Bellali and Danai Papadatou’s (2006) grounded theory
study of the decision-making process on organ donation, noting that
parents’ decisions are entangled in their bereavement and depend on
acceptance of their child’s diagnosis as final. Typically, those who cannot
accept this diagnosis instantaneously decide not to donate. For others,
decision making involves extended family members and hospital staff.
Ultimately, the parents make the final decision. If one spouse strongly
opposes donation, the other honours this choice. This apparent respect
for the integrity of the body, for instance, corresponds with the impor-
tance of ‘retrieval of the whole body or all of its parts’ in military deaths
(Ben-Ari, 2005). Third, there is Kaoruko Aita and Ichiro Kai’s (2010)
study that examined Japanese physicians’ practices and perceptions of
withdrawing life support in a culturally and legally complex situation
using methods based on grounded theory. The nature of life-sustaining
technology and consequences of its withdrawal deeply affect physicians’
decision making. Although withdrawing some artificial supports is non-
problematic, mechanical ventilation raises multiple challenges. In cases
of brain death, such withdrawal leads to almost immediate cardiac arrest,

destroying the appearance of a peaceful death for family members. Some
physicians interpret this withdrawal as a life-shortening act, a potential
challenge to their selves as healers. Together, these can generate police
or mass media attention and, ultimately, legal problems. Thus, Aita and
Kai’s (2010) method uncovered how a particular technology, physicians’
agency in decision making, cultural values surrounding death, and legal
structures implicate physicians’ selves and family members’ experiences
of loved ones’ deaths.
The strength of grounded theory studies like those discussed here lies
in their focus on experiences of terminal illness and dying. Gaining insight
into these experiences is particularly worthwhile considering contem-
porary medical changes – treatments that extend life despite terminal
diagnoses, cost-cutting in health care that shortens hospital stays, and
expansion of palliative care – that impact on the experience of illness and
dying. Indeed, people can now live a long time with a terminal illness
(Nissim et al., 2012), possibly spending years or even decades in fear.
The line between being ill and dying blurs as people create ways to live
‘under the shadow of death’ (Sarenmaim et al., 2009). Studies exploring
these new experiences of terminal illness using grounded theory
methods, while finding suffering, appear to be especially amenable to
uncovering resiliency (see Charmaz, 1991; Sarenmaim et al., 2009), even
compelling researchers to change perspective dramatically (for instance
Nissim et al., 2012). Again, some examples are worth mentioning here.
Dennis D. Waskul and Pamela van der Riet (2002) examined living with
an out-of-control body using interviews and poetic representation to
convey cancer patients’ extraordinary suffering. Pain and suffering bring
anguish and grief as cancer sufferers search for meaning of their cancer
and death. Their efforts can lead to reinterpretations of selves at higher
levels of meaning. Alternatively, unbearable pain shrinks one’s world
to sensation of pain, silencing the self. Even with successful treatment,
cancer survivors often live with feelings of bodily betrayal, uncertainty,
and fear. While acknowledging sufferers’ use of various strategies to
protect the self, these researchers emphasise suffering. By contrast, using
grounded theory to study the recurrence of breast cancer, Sarenmaim
et al. (2009) found a ‘devastating, life-altering event ... forced [women] to
reconsider their life world’ (p. 1123), but most found new meaning in life,
even constructing wellness. These women not only come to terms with,
but transcend fear, repeated setbacks, and loss, finding life while facing
death. Similarly, Nissim et al.’s (2012) longitudinal study of living with
advanced cancer generated stories of resourcefulness and agency, rather
than expected descriptions of loss and suffering. The researcher dropped

her initial [Kubler-Ross influenced] terminology, which restricted under-
standing and instead produced a core category of ‘striving to grow in
the land of living/dying’ (p. 368). Participants accomplished growth
by controlling dying, valuing life in the present, and creating a living
legacy. Others have used constructivist grounded theory to examine
living with lung cancer, finding that those affected maintain integrity
by living in the present while facing death (Horne, Seymour and Payne,
2012). In fact, living in the present or carrying on as normal can be more
important than planning for end-of-life care. Maintaining integrity by
balancing living with dying and protecting one’s family from worry,
financial burdens and the stress of decision making were accomplished
through carrying on as normal, even while making practical plans, such
as wills, in secret. The balancing act reflects and gives varied meaning to
the experience of dying but complicates nurses’ work because initiating
discussions of death and terminal care could threaten some patients’
integrity and increase their suffering (Horne, Seymour and Payne, 2012).
Although nurses might find it difficult to initiate these discussions, many
physicians avoid telling patients that they might die, even in the face of
contemporary recognition of patients’ rights. In yet another innovative
constructivist grounded theory project Wendy Anderson and colleagues
(2013) audio-recorded hospitalist physicians’ intake interviews of seri-
ously ill patients. Despite life-limiting diagnoses and recognition that
they were very ill, most patients did not see their health problems as
terminal, a view their hospitalists did little to alter. Not a single physi-
cian raised the possibility of death with a patient who did not initiate
such a discussion. Hospitalists served as generalists who coordinated
between primary and specialist physicians and thus could refer discus-
sions involving death to other doctors. Of course, avoiding talk of death
means a failure to discuss end-of-life care.
Studies like those discussed above illustrate the use of construc-
tivist grounded theory to go deeper into the phenomena of interest,
compared to work using other, more positivist approaches. Anderson
et al.’s (2013) recorded intake interviews introduced an atypical form of
data for grounded theory research and restricted their interactions with
patients, while giving them crucial interactions to analyse. Their use of
dimensional analysis, a further innovation, reflects the openness to new
methods that is one of the hallmarks of the constructivist approach.
Although neither publication provides methodological details needed
to show concretely how these research teams ‘worked’ the constructivist
approach, the theories they produced and their manner of presentation
reflect this epistemology. In contrast, Kumar Ravi Priya analyses his use
of constructionist grounded theory in new-paradigm research, which
aims to build caring, empathetic relationships with participants in order
to ‘facilitate flourishing, healing, or self-growth for both’ (2010, p. 479).
He illustrates the transformative potential of this integrative approach
using his three-year study of survivors of a devastating earthquake,
which left nearly 14,000 dead in Gujarat state, India. Priya sought to
understand these survivors’ existential crises, recognising his responsi-
bility for them, while searching for meaning in his life. He connects
this natural and human disaster to personal experiences of survivors
in two settings (urban and rural), cultural beliefs, and the construction
of meaning simultaneously with constructing the research relation-
ship. Priya effectively demonstrates that constructivist grounded theory,
with a sensitivity to both existentialism and symbolic interaction, can
connect multiple levels of analysis, from individual emotions to culture
to the structure of social relationships in varied settings. He argues that
participants ‘pieced together selves through interviewing’ as he guided
them to ‘create continuity out of discontinuity’ (2010, p. 490). His report
addresses methodology and key sociological concepts, but is also fully
personal, as Priya describes being humbled by the ‘intensity and nature
of pain ... greater than any intensity of pain I have ever faced’ which
made him ‘realise the “littleness” of my suffering in life’ (2010, p. 492).
Constructing collective meanings of death and dying
While the relevance of grounded theory in studying experiences with

terminal illness has been illustrated above, the method is also well suit-
able for examinations of collective meanings of death and dying that
move beyond death by natural causes, as Priya’s (2010) above-mentioned
research illustrates. Work in the area of extraordinary death, although
not grounded theory, illuminates issues for which this methodology
would be invaluable. We use a few examples to suggest new directions
for constructivist grounded theory work.
Sheldon Ekland-Olson (2012), for instance, addresses questions of
meanings for eugenics, abortion, euthanasia, and capital punishment
with historical analyses of the social construction of answers. His
analysis opens possibilities for using a constructivist grounded theory
approach with historical and legal data to examine social constructions
that take place over decades and involve multiple levels of structural
and power relationships. Charmaz (1980) addresses parallel issues by
framing murder, capital punishment, and war as the routinisation of
extraordinary death. Her approach is explicitly constructivist as she

attends to the construction of actions that lead to such deaths and proc-
esses by which they become routinised, particularly for those who do
the death work. Although this work is not new, these issues and insights
remain relevant. For instance, war involves the routinisation of death
on a mass scale by and for both the soldiers directly involved and the
society on whose behalf they kill. Leaders still draw on ‘generic values’
such as appeals to ethnocentric patriotism or claims that the ‘enemy’
threatens a way of life to construct support. Killing at a distance (such
as via bombing raids), important for separating killing from the soldier’s
self and central in modern warfare, is increasing with the advent of drone
warfare (Benjamin, 2013). Despite the normalisation of military death,
care taken of dead soldiers has implications not only for the military but
also for its relationships with various stake-holders, including families,
media, social movements, potential recruits, and more (Ben-Ari, 2005).
Above all, these deaths must have meaning, thus connecting the struc-
tural and the personal.
These examples also illustrate the importance of changing technology
and our fumbling attempts to deal with it in defining the parameters of
problems surrounding death and dying. Adele E. Clarke and Susan Leigh
Star (2003) suggest that interactionists take seriously the non-human
elements in various social worlds and controversies, attending not only
to their consequences but also to their agency. We agree and addition-
ally argue that both symbolic interactionists and grounded theory prac-
titioners turn their attention to extraordinary death and dying.
A brief example of using constructivist grounded theory:

disclosing illness
We have highlighted the strengths of (constructivist) grounded theory

in studying both (individual) experiences with terminal illness and
collective meanings surrounding extraordinary death. We will now give
a concrete example of a grounded theory study in the field of death
and dying with the aim of demonstrating how constructivist grounded
theory works with data. Concretely, we illustrate this by drawing from
the work on disclosing illness of one of us (Charmaz).
Constructivist grounded theory begins by asking the typical grounded
theory question: what’s happening in the data and/or field setting?
As constructivists we study and define implicit meanings and proc-
esses in our data and attend to our research participants’ stated and
tacit concerns. From these beginnings, we follow leads arising through
comparative analysis of data and codes and piece together connections

between them that lie beneath the surface. In my (Kathy Charmaz) early
data on experiencing chronic illness, disclosing illness emerged as a
significant issue for research participants and led to addressing silences.
If, when, and how to disclose diagnoses, illnesses, and prognoses to
family, friends, employers, and co-workers can pose knotty problems for
people with serious conditions.
The analytic thrust of grounded theory helped me sort and define
research participants’ situations and actions. As a constructivist
grounded theorist and symbolic interactionist, I examined participants’
language of disclosure and their construction of discourses to talk about
it. Constructivist grounded theorists delve deeper into subjective expe-
rience and address how it is constituted more than earlier grounded
theorists.
Grounded theory strategies begin with coding inductive data.
Constructivist grounded theorists subscribe to line-by-line initial coding
and coding for processes. Line-by-line coding prompts the researcher to
look closely at the data and begin to categorise them. Coding for proc-
esses explicates participants’ actions and enables researchers to connect
actions and structures. It also helps researchers to sense or grasp implicit
meanings. ‘Avoiding disclosure’ arose as a significant code early in the
analysis. But what did it mean? Obvious reasons why people avoid
disclosure included protecting their jobs and relationships, yet my anal-
ysis also indicated less overt reasons. Subsequently, I dealt with varied
conditions under which someone avoided disclosure and looked for its
implicit meanings. Preserving self and moral status and fear of eliciting
a life-threatening crisis were among them.
Comparative analysis of research participants’ stories and my codes
of them revealed differences in experiences, viewpoints, and situa-
tions. Patterns become visible through explicating the varied situations
and conditions under which people tell others about their illness. For
example, claiming illness without the legitimation of a diagnosis leads
to being discounted and experiencing reduced moral status. In turn, lack
of medical legitimation enforces silence, despite sustained suffering. In
contrast, other situations proclaim information and visible difference.
Experiencing crises and hospitalisations becomes hard to hide when
one is still employed. Through engaging in early coding and compara-
tive analysis, I defined disclosing as a subjective form of telling other
people about one’s illness because it brought concerns about self to the
forefront. Other forms included informing, strategic announcing, and
flaunting, and contained objective elements.
Disclosing particularly interested me because of the struggles people

had with it. Constructivist grounded theorists aim to represent these
struggles in how we define our categories through their empirical
properties and their construction. The properties of disclosing include
revealing or acknowledging troubling information about self, venturing
into distressing feelings, and risking undesired outcomes from the
telling. Disclosing elicits dilemmas concerning relationships and agency
about whether to tell or not. These dilemmas turn on individual control
over information and definitions of self. Because disclosing is risky,
many people try to conceal signs of illness and avoid disclosure after
once taking or assessing the risk.
Memo-writing is the intermediate stage of analysis in which researchers
examine their data, codes, and emerging categories and make compari-
sons between them. By writing memos that defined and explicated the
properties of avoiding disclosure and each type of telling, my analysis
became more complex and theoretical. These memos fostered defining
connections between the categories. It became clear that as their illness
progressed people dealt with information about it in different ways,
depending on their situations and the structure of their lives.
Studying disclosing leads to tracing how people tell others over time
about having an illness. Taking this stance raises a series of analytic ques-
tions. How do people experience moments when they disclose informa-
tion about their illnesses? How does time and progression or remission
of illness affect disclosures? To what extent does a specific audience
affect the content, framing, and timing of someone’s disclosure? What
insights do we gain from comparing individuals’ stories and situations?
Constructivist grounded theorists can then interpret how the conditions
of experience shape action. One condition concerns how much time a
person can mull over when to disclose. People facing immediate hospi-
talisations have none. Ten years later, a young singer recalled telling
her beloved voice teacher about having surgery and risking losing her
voice:
I didn’t have very much time to disclose this news. I found out I had
cancer. I had surgery the next day ... I had to just tell people. And
naturally, he drove up to see me the next day, was at the hospital,
held my hand, the whole nine yards. But it was harder for me to even
conceive of telling him, because our relationship hinged solely on the
fact that I was a singer. My mother would have been there for me. But
as far as my voice teacher? If I couldn’t sing, I was going to lose this
guy. (Wertz et al., 2011, p. 110)
Time limits and visibility were two conditions that forced this young
woman’s disclosure. The growth on her neck rapidly swelled before her
surgery; the evident slash and scars and her croaking voice proclaimed
changes afterwards. By attending to language throughout her story,
I defined voice and self as merging. Losing her voice not only meant
losing her most significant relationship but, moreover, the only self she
had known and valued (Charmaz, 2011).
Grounded theorists trace how such conditions affect disclosing over
time. The iterative process of going back and forth between data collec-
tion and analysis aids researchers in making analytic distinctions and
clarifying sequences. For constructivist grounded theorists that means
building from subjective experience to situated generalisations. New data
refine the analysis and, in turn, the emerging analysis focuses the data
collection. A common sequence occurred in my study: first, people often
engaged in spontaneous disclosing in the early phases of illness when
shocked by a devastating diagnosis or their health problem was visible.
The news spilled into their conversations. When shocked, telling others
made the diagnosis and its implications real to self. Second, despite an
early willingness or eagerness to disclose, people who met with stigma-
tising responses shifted to hiding information or measuring disclosures.
Other people tire of hearing detailed medical reports or stories of the
travails of managing a serious illness. Third, by attending to research
participants’ experiences, I could discern how they became experts at
timing when and how to disclose, reading other people’s responses, and
calibrating how much to reveal and when to stop. The greater the risk,
the more careful people become about disclosing. Fourth, subsequently
what earlier would have been informing becomes a risky disclosure.
Participants’ emergent meanings and actions turned on the changing
social conditions of their lives.
Through making systematic comparisons, patterns emerged that
differed by age (Charmaz, 1991). Young people’s concerns typically
turned on intimacy. Young single people questioned when they should
tell a potential partner about their illness. One young man with a prog-
nosis of a foreshortened life said that he ‘blurted it out so that a girl knew
it before getting involved’. Partnered young people often feared that
their partner would leave, particularly if someone had left them before.
Elderly individuals worried about losing autonomy. Subsequently rather
than disclose illness or progressive symptoms, they would risk health
and safety to preserve maintaining their independence.
Theoretical sampling, a major grounded theory strategy, means
sampling to fill out the properties of a category. In this case, I used it for
(1) defining the properties of disclosing, (2) distinguishing it from other

forms of telling, and (3) learning when and how it changed. By going
back to earlier data and following up on pertinent remarks in new inter-
views, I fleshed out my analysis of disclosing, which then illuminated
the significance of silences.
The analytical process leads us to contextualise our categories.
Remaining silent is the other side of disclosing. While some people
chose silence, others had it imposed upon them. Afterwards, they may
choose silence to avoid demeaning judgments as one woman did who
had sequential mastectomies for breast cancer.
The chemotherapy and radiation treatments made her deathly

ill. Despite her extreme weight loss, baldness, and lack of energy,
friends and family trivialised her illness. She said, ‘For my father
and his wife this was kind of like get over it, Martha, it was like
I had a toothache or an earache or something, it was like just get
over it. I mean they were not supportive at all.’ (Charmaz, 2009b,
pp. 245–246)
One criterion of grounded theory methods is the modifiability of an

analysis as new data illuminate a specific category or process. Stories
in later studies accounted for why people remain silent about serious
diagnoses and symptoms. Not wishing to acknowledge the validity of
the diagnosis is one condition that can result in early silence. A middle-
aged woman, whose life had been taken over by fibromyalgia, received a
diagnosis of breast cancer but did not tell anyone. She talked about her
uncharacteristic response to her situation:
Actually I have to tell you something, when I first found a lump in

May, I didn’t tell a soul. Now you must know that I’m the kind of
person if it’s on my lung it’s on my tongue, everybody knows every-
thing about me, especially I’m very close to my family, my sisters
and my mother, and you know, subconsciously so I didn’t want to
deal with it that I didn’t tell a soul for almost six months. (Charmaz,
2009b, p. 246)
Constructivist grounded theory moves beyond outlining proper-

ties, conditions, contexts, and consequences. Gareth Williams (1993)
argues that social scientists need to construct concepts that preserve the
context of the illness experience and the person’s moral life within it.
Constructivist grounded theory does just that.
Conclusion
Grounded theory has a well-established tradition of studying issues of

death and dying. Differences between classic grounded theory and
constructivist grounded theory begin with epistemology and, thus, are
seen primarily in researchers’ understandings of, and approaches to, the
task. As constructivist grounded theory rejects earlier assumptions of
researcher objectivity, emphasising interaction with participants, iterative
work, and processes, the methodology goes deeper into the phenomenon
and into excavating meaning. Acknowledging that the viewer is part of
what is viewed opens myriad opportunities for unanticipated insights,
insights that can disturb what we think we know. We can adopt the princi-
ples of starting with detailed micro processes that the case example exem-
plifies and from them develop contextualised and situated generalisations
at structural levels of analysis. Or we can integrate larger structures, as
these are part of participants’ experiences with illness, death, and dying.
Either way, the examples above demonstrate that constructivist
grounded theory can be used with multiple types of data at multiple
levels of analysis. If we want to understand meanings, selves, and proc-
esses as these connect to social structure, we must cast a wider gaze – one
that covers the complexity of people’s experiences with illness, death,
and dying. Part of this wider gaze is the acknowledgement of technol-
ogies. Indeed, varied technologies continue to grow in importance in
the experience of illness, death, and dying, impacting not only possible
treatments but meanings of these profound life experiences. Therefore,
we must attend to technology in our work, even to the point of treating
some technologies as actors. Additionally, we have an obligation to
contribute to major discourses of the day. Some of these involve the defi-
nitions and processes related to death caused by terminal illness that we
study traditionally, while others require examinations of extraordinary
deaths. This chapter has sought to highlight the relevance and value of
constructivist grounded theory and symbolic interactionism in providing
the methodological and conceptual tools needed for these tasks.
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3
Feeling Bodies: Analysing the
Unspeakability of Death
John Cromby and Adele Phillips
Introduction
Hacking (2000) observed that merely claiming that a phenomenon is

socially constructed is of relatively little value. More is to be gained,
he suggested, by making nuanced claims that identify precisely what is
being constructed and which processes are involved. In this chapter we
discuss how the meanings of death are socially constructed in language:
narratives and discourses arrange its elements in socio-culturally legiti-
mated ways, and regimes of discourse locate death within webs of visi-
bility and power. Simultaneously, we extend this constructionist analysis
by showing how the meanings of death are also socially co-constituted
through the feeling body. We explain how feelings can be conceptual-
ised, and describe how their dynamics endow speech with an unspeak-
able flux of meaning that gives it sense and purpose. In contemporary
Western cultures death, too, is somewhat unspeakable, and we suggest
that a focus on feelings helps render this unspeakability more sensible
by showing how its felt elements get enacted in social relations and
personal experience. Finally, we illustrate this by briefly presenting some
empirical, qualitative research that explores feelings associated with
early bereavement.
The unspeakability of death
In Western cultures today, death might be considered unspeakable

in at least three intersecting ways. The first sense in which death is
unspeakable is that contemporary Western cultural practices have often
removed it to specialised, sanitised sites – the clinic, the hospital, the
hospice – where it is enrolled within thoroughly professionalised rituals
52
Feeling Bodies 53
of nursing, medicine and palliative care, and largely hidden from the
public gaze. These practices help constitute what some see as long-term
cultural trends to expropriate death from individuals and obscure or
conceal it from the public realm (Elias, 1985; Illich, 1976). Nevertheless,
in saying this we are not reviving Aries’ (1981) suggestion that between
roughly 1850 and 1950 the ‘truth’ of death became medicalised and
silenced, hidden both from the public and from the dying themselves.
Armstrong (1987) identifies two problems with this claim. First, it is
inaccurate, since death continued to be spoken about constantly during
this period. Second, it implicates a liberal humanist notion of truth that
fails to recognise how regimes of power and discourse produce both
truths and untruths about which we are variously incited to speak or,
indeed, remain silent. Armstrong proposes that, rather than death being
silenced and its truth concealed, a new matrix of discourses on death rose
to prominence during this time. These discourses, frequently mobilised
around the death certificate, rendered each individual death visible for
the state and its officials. Death was discursively constructed as a public
concern, made tractable by statisticians and medical officers, the target
of social policies, medical practices, statistical inquiries and government
interventions. At the same time, the frequent institutionalisation and
professionalisation of death served both to alienate it somewhat from
the immediate social circle of the dying and to hide it from the casual
public gaze.
Thus, unspeakability does not mean that death today is never repre-
sented or talked about. Rather, a more subtle effect frequently occurs,
contingent upon both the material removal of death from the public
gaze and the myriad of discourses and representations by which it is
consequently revealed and produced. As these elements combine and
recombine, generating continuously fluctuating capacities for diversion,
deflection, distraction and misrepresentation, death’s personal inevi-
tably is frequently obscured and its corporeal actuality often airbrushed;
three examples must suffice to illustrate this. First, contemporary
Western cultures strongly valorise youthfulness over ageing, in so doing
promoting a kind of ersatz agelessness (Bytheway, 2000), a cultural
proclivity that might make it seem as though death could be forever
deferred or displaced. Second, frequent emphases upon how bodies and
brains can be continually refashioned in practices of training, organ
transplantation, cosmetic surgery and biotechnology (e.g. Pitts-Taylor,
2010; Sharp, 2000) simultaneously deflect attention from the inevita-
bility that those bodies and brains will one day fail. Third, the removal
of death from the public gaze means that media representations are for
54 John Cromby and Adele Phillips
many their primary source of knowledge. However, even where death is

foregrounded – in television shows that celebrate the work of forensic
pathologists (Tait, 2006), or in films where deaths are common dramatic
devices (McInerney, 2009) – it appears in particular, often sanitised
ways, and some kinds of death are represented far more frequently than
others.
In this first sense, then, the contemporary unspeakability of death
is produced by its material removal to specialised locations, where it is
enrolled within professionalised practices; by prominent emphases upon
aspects and periods of life to which death is antithetical, and to which
it is rarely relevant; and by representations of death that frequently
sterilise or distort its actuality. Nevertheless, like all cultural elements,
these proliferate and persist because of their utility, because they make
tractable yet other aspects of experience: this leads us to the other two
senses in which death today is unspeakable.
The second sense in which death is unspeakable is that it is, for the
person who dies, the absolute end of all speaking, and this is a ‘universal,
transcultural, transhistorical phenomenon … fiercely resistant to reduc-
tion to laws, functions, powers and interests’ (Carey, 1989, p. 59). Death
inhabits every life, generating strong imperatives to make it sensible, and
provoking in every culture a multiplicity of discourses, rituals and prac-
tices by which to manage its character as the ultimate, universal absence
(Hay, 2009). In the West today, whilst medical discourses frequently
dominate our understanding, death is simultaneously approached
through discourses of spirituality, religion, (varieties of) humanism, and
militant atheism (e.g. Dawkins, 2008; Frantz et al., 1996; Segal, 2004).
We have discursive constructions of the good death (Van Brussel and
Carpentier, 2012), and of the distinctions between murder, suicide,
euthanasia, assisted dying, and death from ‘natural causes’ (Lewis, 2011;
Marcoux, 2011). At the same time, death continually highlights the utter
absurdity of an existence which can contain so much beauty, tragedy
and particularity, and yet is seemingly destined to simply become
nothing at all (Beckett, 2006). The absolute and absolutely absurd end
of all speaking, an incomprehensible absence that cannot be sensibly
contained in language, death imposes limits on representation and in
this sense remains ‘unspeakable, except in a very superficial manner’
(Smith, 2006, p. 64).
The third sense in which death is unspeakable in the West today is that
it typically evokes complex mixtures of powerful feelings. When we lose
a loved one, feelings of various kinds are typically provoked, mixtures of
feeling that can become so intense, complicated and enduring that they
Feeling Bodies 55
are sometimes associated with adverse health outcomes (Bonanno and

Kaltman, 2001). Feelings are a prominent aspect of our embodiment: a
term referring to both the location and the character of the body in the
world, and the ways in which this body structures and enables experi-
ence. Scholars of embodiment frequently emphasise the body’s ineffa-
bility, the way that its meanings and significances always elude precise
characterisation and capture in the webs of language (Shilling, 2003;
Stam, 1998). However richly we describe the embodied, felt aspects of
our experience there is always a remainder that eludes description, an
excess which is not speakable; words and feelings seem to be ontologi-
cally of different orders, however thoroughly they might be enmeshed
together. If the force and complexity of our feelings about death were
not already enough to render them unspeakable, their intrinsic char-
acter as felt tendencies within the body necessarily adds a further layer
of difficulty.
These three strands of unspeakability are thoroughly bound together,
albeit that they intersect unpredictably in ways that dynamically reflect
the shifting contingencies of everyday life. Their combined influence
occasionally becomes a practical concern, for example in discussions
of palliative nursing that attribute unspeakability both to death itself
(Griffie, Nelson-Marten and Muchka, 2004), and to the grief and other
feelings associated with it (Brady, 2005). Whilst in this chapter we will
focus primarily on this third strand of unspeakability, the feelings asso-
ciated with death, this need not preclude engagement with the other
aspects we have identified. By the time we are able to turn around
and reflect upon them our feelings are both social – bound up with
the demands of the present moment – and socialised: experienced and
enacted somewhat habitually in ways reflective of prior experience.
How we feel about death is constituted from our uncertain sense of
its meaning in and for life, and this sense is both a constituent and a
product of how we configure its unspeakability, how we engage with its
discourses and practices, and how these discourses and practices struc-
ture the successive moments of lived experience. Simultaneously, the
discourses and practices we favour will typically be those that already
align with the ways that we feel, and when they are not we will feel
uncomfortably aware of this: as, for example, with funeral orations by
celebrants unfamiliar with the life of the deceased.
Regardless of their embodied situation and the ineffability of their
meaning, the feelings associated with death do not play themselves out
within an isolated Cartesian theatre. Rather, they continuously reflect
our place in the social and material world: feelings are continuously
both constitutive of understandings of death and – in a thoroughly

dialectical fashion – a product of them. The affective is not opposed to
the cognitive and nor is it separable from it, which is why Prinz (2004)
can sensibly categorise emotions as ‘embodied appraisals’. Feelings,
meanings, discourses and practices go together, they are enactive of each
other and constitutive of each other. For example, death is frequently
associated with organised religion, the discourses and practices of which
function quite explicitly to inculcate embodied organisations of feeling,
organisations that are intrinsic elements of the lived commitments we
call religious or spiritual belief (Cromby, 2012).
Cast in this light, it might at first seem that our feelings about death
are largely beyond analysis. Their complexity, profundity, ineffability
and contingency might seem to be such that any scholarly investiga-
tion could only ever produce the most superficial, artificial, abstract and
decontextualised understanding. Yet the same is largely true of the great
majority of feelings. Feelings are frequently complex; they are always
embodied, and therefore somewhat ineffable; and they are always locked
into feed-back and feed-forward loops within which they are both inter-
pellated (‘called out’) by, and primordially constitutive of, the situated
lines of action (Ginsburg and Harrington, 1996) or trajectories of social
participation (Dreier, 1999) in and from which experience is made. The
feelings associated with death might differ contingently from others in
their specific intensities, mixtures, textures and entanglements – but not
in their intrinsic qualities as feelings, their status as subjective experi-
ences of states of the body–brain system as it mediates and enables our
situated, relational being in the world.
Feelings
In recent years there have been prominent tendencies within the

humanities, social sciences and psychology to engage with the vagaries
of affect, emotion and feeling, an interdisciplinary trend known as the
‘affective turn’ (Athanasiou, Hantzaroula and Yannakopoulos, 2008;
Clough and Halley, 2007; Gregg and Seigworth, 2010). The litera-
ture associated with this tendency is heterogenous and dispersed: it
includes accounts of experience (Bradley, 2005; Middleton and Brown,
2005; Stephenson and Papadopoulos, 2007) and explications of process
philosophy (Brown and Stenner, 2009; Stenner, 2008) as well as work
more narrowly focused on the felt or affective realm. Moreover, in
this work even the meanings of the core terms affect, emotion and
feeling are the subject of some debate. In many accounts affect is
Feeling Bodies 57
the primary category, although this superficially unitary notion in

fact gets conceptualised differentially within relevant disciplines,
which include philosophy, psychoanalysis, affective neuroscience and
psychology. From most of these perspectives affect does not (and for
some of them cannot) enter awareness: when it does so, we know it as
a feeling. Emotions, then, can be understood as historically and cultur-
ally produced, relationally inculcated, relatively stable configurations
of affect, feeling, discourse and practice, hybrid assemblages of feeling
and performance endowed with normative significance and meaning
(Blackman and Cromby, 2007). But even this neat settlement can be
challenged: different definitions of affect yield different affordances
for analysis; affect and emotion cannot always be so readily distin-
guished as these definitions suggest; when analysts identify or catego-
rise affects it is almost invariably emotion words they use; distinctions
between affect, emotion and feeling are not followed consistently
either within or between disciplines, and indeed the terms are some-
times used interchangeably (6, Squire, Treacher and Radstone, 2007;
Greco and Stenner, 2008).
One way of resolving these debates is to focus primarily on feeling.
Unlike the other two terms, feeling is a linguistic prime (Shweder,
2004; Wierzbicka, 1999): all human cultures have a word or concept
that denotes feeling, making it a strong candidate upon which to found
analysis. Feeling is also a more inclusive concept than emotion or affect:
it potentially encompasses a diverse range of bodily states with which
our responses to death might be inflected but which are nevertheless
not conventionally (or even at all) emotional. Simultaneously, it is also a
more orderly concept because it ties analysis to the experiential realm –
specifically, the human experiential realm – perhaps reducing the kind of
analytic overspill that Wetherell (2012) identifies within analyses where
affect has the seeming potential to be everywhere and everything.
If it is to yield a solid basis for analysis feeling needs to be conceptu-
alised adequately, and for this we can turn to Suzanne Langer’s work.
Like other philosophies associated with the affective turn – for example,
those of Whitehead (her former supervisor) and Deleuze – Langer’s is
a process philosophy that consistently treats feeling as a verb rather
than as a noun; feeling is something we do, not something we have.
Alongside Whitehead, Langer was also influenced by Wittgenstein, and
by the neo-Kantian Cassirer: consequently her work evinces both recog-
nition of the limits of language and, simultaneously, a continual drive
toward the systematisation of forms and patterns, including those that
lie beyond formal (typically linguistic) representation.
Feeling, for Langer, is the base category of all experience, the primor-
dial process by which we know our world and our selves, sensuously
and immediately. Whilst life persists our bodies are always doing things,
always preparing and anticipating, always managing the impact of
events, activities, environmental influences and internal dynamics.
Most of these constantly fluctuating impacts remain below the level of
consciousness, but when they reach a certain intensity or pitch they
cross a (mobile) threshold beyond which they suffuse awareness with a
subjective sense of the momentary state of the body–brain system, and
it is this emergent phase of bodily being that we call feeling. Langer
(1967, p. 21) explains this using the analogy of an iron bar: ‘When iron
is heated to a critical degree it becomes red; yet its redness is not a new
entity which must have gone somewhere else when it is no longer in
the iron. It was a phase of the iron itself, at high temperature.’ Like
the redness of heated iron, feeling emerges as a phase or quality of the
body, under certain conditions or in particular states. It is a continuous
capacity or potential of the living body, not an additional substance or
separable realm somehow associated with it.
Conceptualised this way, feeling is the very stuff of experience
itself, the raw material from and upon which all of our more formal,
intellectual or representational understandings arise. From Langer’s
perspective not just emotion, but all forms of experiencing, knowing
and reflecting upon the world can be traced back, at least in part, to
embodied dynamics of feeling. The movements and forms of feeling
continuously lend shape and significance to absolutely every aspect of
our lives and experience, and this occurs to such a vital extent that: ‘the
entire psychological field – including human conception, responsible
action, rationality, knowledge – is a vast and branching development of
feeling’ (Langer, 1967, p. 22).
Regardless of their multiple, shifting associations with people, words,
symbols, rituals, objects and events, feelings themselves contribute
to meaning: they have qualities, textures, intensities, directions and
valences that both signify and motivate. This means that to investi-
gate feelings we need some way of ordering them, and one of us has
suggested elsewhere that we might do this by identifying three analytic
categories (Cromby, 2007). The first category is emotional feelings, the
somatic or corporeal element of emotions: the bodily weight of grief,
the tight muscles of anger, and so on. Emotions are complex hybrids,
both biological and sociocultural, normatively associated with regimes
of power and local moral orders, and simultaneously shaped by the
particulars of situated interaction. Nevertheless, on most accounts they
Feeling Bodies 59
necessarily also implicate some degree of bodily perturbation and it is

this corporeal aspect that can be called emotional feelings. As we have
noted, many strong emotions – most commonly, perhaps, grief and
fear – are typically associated with death.
The second analytical category, extra-emotional feelings, consists of
those feelings which are sometimes described somewhat dismissively as
‘sensations’ and then relegated to a subsidiary or primitive status by
comparison with purportedly ‘higher’ processes of cognition. Some of
these feelings are associated with motivational urges: feeling that we
want to eat, drink, sleep, rest, have sex and so forth. Others index the
location and status of our bodies in the world and the corporeal aspects
of our activity: being touched, tickled or caressed, being too hot, too
cold, itchy, in pain, comfortable, and so forth. Whilst all of these feel-
ings frequently recruit emotional feelings (hunger, for example, might
recruit anxiety) they are not identical with these emotional feelings
(hunger is not the same thing as anxiety): hence their designation as
extra-emotional. In relation to death, Rosenblatt (2008, p. 8) notes the
relevance of extra-emotional feelings when he observes that ‘bereave-
ment is like fatigue. One loses strength and energy. One feels tired and
as though one needs to sleep more. Anything one does may have a plod-
ding, struggling quality.’
The third analytical category is feelings of knowing. This category
encompasses those feelings that shade across most completely into
language and cognition, that are most inseparable, phenomenologi-
cally, from our other ways of knowing. These feelings are frequently
subtle and fleeting, and their somatic characteristics (intensity, location,
duration) vague and difficult to articulate. In relation to death, feelings
of knowing frequently include those associated with religion and spir-
ituality – for example, comforting feelings to do with having faith or
security in an afterlife for the deceased (Frantz et al., 1996).
Analytically, feelings of knowing can be further subdivided into rela-
tional and intellectual feelings. Relational feelings of knowing are theo-
rised by Shotter (1993) as ‘knowing of the third kind’, and are a critical
component within what he calls joint action: his term for the radical
indeterminacy of conversation, the open-ended way in which interac-
tions and conversations can always produce unexpected outcomes. As
we relate to others we ‘read’ their intentions and expectations from our
ongoing sense of their embodiment (based upon subtle cues of gesture,
posture, comportment, orientation, inflection and tone), just as they,
simultaneously, read ours. These continuously updated, mutually
responsive readings yield, for both participants, an ongoing, embodied
sense of the character of the interaction, a constantly unfurling feeling

of how each is in relation to the other.
Intellectual feelings of knowing are discussed by Johnson (2007) who
draws upon Gendlin and James to explore the feelings indexed by what
superficially appear to be entirely ‘logical’, content-free terms – the small
yet important words like ‘and’, but’ or ‘also’ that direct our arguing and
thinking. He suggests that logic and reason – which are superficially
abstract and disembodied – actually depend upon a felt, embodied
sense of the problem with which we are engaged. Johnson proposes
that, in our lived experience, these small words are not content free at
all: they are verbal indices of our felt sense of some aspect of the matter
at hand. The word ‘but’ for example, manifests a feeling of obstruction
or disjunction, whereas ‘and’ enacts a feeling of connection or asso-
ciation. These fleeting, subtle feelings guide our reasoning, which on
this account is just as much corporeal and somatic as it is linguistic or
discursive.
These categories of feeling can be distinguished analytically but in
lived experience they are far less discrete and are frequently inseparable,
both from each other and from the more overtly logical processes we call
cognition. Feelings of hope, for example, have been shown to suffuse
the talk of dying cancer patients and to influence their interpretations of
the notions of ‘miracle cure’ sometimes associated with breakthroughs
in medical science (Eliott and Olver, 2009). In lived experience different
kinds of feelings continuously flow into and out of each other, into
and out of language, and within and between individuals. Amongst the
recently bereaved, feeling may be so intense, complex and resistant of
easy characterisation that sometimes people can only sensibly say that
they feel numb (e.g. Bennett and Vidal-Hall, 2000).
Additionally, current feelings can be reactions to immediately
previous feelings, and then feed forward into future feeling states: we
might feel scared by the intensity of our grief on losing a loved one, and
this fear might then make our grief more oppressive and overwhelming.
Moreover, our feelings can respond to the feelings of others in similarly
circuitous ways. As your friend, the depth of your grief might make me
worried – for your wellbeing, and for my own ability to respond appro-
priately to your misery; and my worry might then become a concern for
you. Consequently, as the experience of one mother shows, following a
bereavement withdrawal and solitude can sometimes come to feel both
preferable and adaptive: ‘When she was on her own, in silence, she did
not feel the ‘pressure to be whole’ as much: “Being on my own, I could
just be broken”’ (Hooghe et al., 2011, p. 915).
Feeling Bodies 61
These inter- and intrapersonal flows and circuits can be so complex

that sometimes we might be unsure just whose feelings we are experi-
encing. One study showed that nurses’ experiences of the ‘sentimental
order’ of a ward for elderly people, a shared or collective organisation of
feeling, seemed to influence their perceptions of ‘good’ and ‘bad’ deaths
for individual patients (Costello, 2006). Similarly, an analysis of entries
in books of condolence for Princess Diana and for the victims of the
Hillsborough football stadium disaster, (Brennan, 2008) identified the
presence of collective structures of feeling which seemingly informed
the feelings and meanings of individual community members. Taking
a cultural–historical perspective, Williams (1968, 1971) described these
phenomena as emergent structures of feeling; psychoanalysts talk about
their interpersonal elements using terms like projection, transference
and counter-transference, whilst notions of emotional contagion and
affect transmission are prevalent within other traditions (Brennan,
2004; Gibb, 2010). These inter- and intrapersonal complexities, in
conjunction with the persistent ineffability of the realm of felt experi-
ence, mean that individualist and humanist notions of feeling are not
sufficient. Feeling primordially constitutes our experience, rather than
simply appearing within it; it follows that we do not have privileged
insight into its convolutions and sources.
Feeling and language

Notwithstanding the importance of feeling, language and other ways of
representing and symbolising experience are also prominent in everyday
life. Language gains additional significance here because it is still the
primary medium through which qualitative research is conducted. In
psychology generally it is ‘the understanding of linguistic meaning
within textual material’ (Madill et al., 2000, p. 1) with which qualitative
research is said to be most frequently concerned. Similarly, qualitative
research in thanatology is described as an approach which ‘focuses its
interest on the words, narratives and stories of individuals and groups’
(Carverhill, 2002, p. 195). Moreover, even where data is not exclusively
linguistic (recently, analysts have been increasingly interested in multi-
modal analyses that engage with data which is photographic, video,
artefactual or in other ways not simply linguistic), published analyses
of these data – condensed into journal papers, conference presenta-
tions, book chapters – still utilise language almost exclusively as the
final common pathway by which analyses are presented. In qualita-
tive research, then, the elements and patterns of language – themes,
discourses, narratives and so on – are largely seen to adequately represent
concerns in participants’ lives, so their analysis as elements of or within

language is frequently treated as sufficient.
Where feelings are concerned, though, qualitative analyses confined
solely to language will not always suffice. A fundamental reason for this
is that the meanings, interests and concerns they bear are not them-
selves simply representational. Feelings of intense grief following the
loss of a loved one don’t stand for that experience of loss: rather, those
feelings are integrally part of it. Indeed, more than anything else it is such
feelings that lead us to experience the bereavement as a loss – rather
than, say, a bitter-sweet relief. Instead of representing, pointing to or
standing for the relationship we previously had, our feelings of grief are
lived elements within its profound transformation by bereavement. They
don’t merely represent (some aspect of) our bereavement, they co-con-
stitute it: feelings – of grief, and in general – are a-representational.
Langer explains how language functions to capture and lend addi-
tional significance to felt, a-representational meanings that would other-
wise pass largely unrecorded. Words and phrases cut into the flow of felt
experience, ‘fixing’ or stabilising elements from it, carving them out in
ways that allow us to represent and reflect upon them, and so making
versions of them available for memory and communication. Language
enables us to represent our feelings, to ourselves and to others, allowing
us – albeit temporarily, partially, imperfectly – to ‘turn knowledge by
acquaintance into knowledge by description’ (Langer, 1967, p. 58).
Nevertheless, language comes later than feeling, both ontogenetically
and phylogenetically. We are embodied creatures, endowed with the
continuous capacity for reflexive awareness of our own bodily states:
this means that even after language does its work, even within the
extensive discursive and narrative patterning of our lives, the rhythms
and forms of feeling continuously shape and influence everything that
we experience.
Meaning
In everyday life, the claim that language does not comprehensively
represent the totality of experiences that fall under the rubric of feeling
would frequently be considered simply obvious. In academia, however,
the suggestion that language does not entirely encompass embodied
phenomena such as feeling can be surprisingly controversial. In recent
years there have been various, sometimes heated (feeling-laden) debates
about the consequences, benefits and costs of conducting qualitative
analyses within an exclusively linguistic epistemology; see Corcoran
(2009, 2010) and Potter (2010) for a recent exchange, and Parker (1998)
Feeling Bodies 63
for some commentaries upon earlier exchanges. These debates have

shown that the issues raised by attempts to include affect, emotion and
feeling within qualitative analyses are complex; consequently, they have
been the focus of numerous discussions. Proponents of psychoanalysis
(e.g. Frosh and Baraitser, 2008) argue that psychoanalytic theories and
concepts can be integrated with other more social approaches in order to
constitute a comprehensive set of psychosocial analytics. Scharff (2011)
considers but rejects psychoanalysis, arguing instead that Ahmed’s
(2004) performative theory of affect (within which affects circulate,
attach and reattach to objects, signs and subjects) is compatible with
qualitative analyses focused upon the local, situated and contingent
play of language and interaction. Scharff further proposes that both can
be compatible with Butler’s performative social theory, which enables
both the (poststructuralist) analysis of over-arching categories such as
gender and the interrogation of regimes of power associated with them.
In an extended discussion, Wetherell (2012) evaluates but also largely
rejects psychoanalysis, instead laying out the elements of a notion of
affective practice which could deploy a minimal notion of subjectivity
that avoids flooding analyses with densely theorised notions that may
be inimicable to, or unsupported by, consistent empirical evidence.
One of us has suggested elsewhere (Cromby, 2011) that some of these
debates might be short-circuited simply by adopting a suitable theory
of meaning. Once we acknowledge that meaning is already not exclu-
sively a matter of language we can adopt a semantics reflective of that
understanding. Analysts can then consider separately the relative merits
of Deleuzian, psychoanalytic, performative or other theories, just as
they can defer debates about whether their analyses should primarily
recruit concepts of affect, of emotion or of feeling. The point is not that
theorisation is no longer necessary, nor that concepts do not have to
be carefully chosen and consistently applied. Rather, by introducing
a generic theory of how meaning continuously exceeds language we
remove the requirement to endorse any particular conceptualisation of
affect, emotion or feeling; this in turn allows analysts to flexibly recruit
the concepts most suited to their own disciplines, research questions
and data.
A generic theory of meaning capable of embracing both its linguistic
and its felt or affective aspects is set out by Ruthrof (1997). He begins
from a poststructuralist position where linguistic meaning is always
contingent upon difference and deferral, and produced by the tempo-
rally mobile relations of difference between signs. Words gain meaning
by being different from each other, and as the relations between them
shift over time so their meanings also change. Ruthrof then observes that
our experience of these linguistic signs always simultaneously includes a
continuous flow of other signs that are not verbal or textual, but corpo-
real. Our bodies constantly yield an ongoing sense of our surroundings,
location, posture, position and state, a continuous flux of feedback
from multiple systems – sensory, kinaesthetic, visceral and so on – and
this feedback generates corporeal signs that thoroughly infuse those of
language. Language is therefore meaningful only to the extent that it is
lived, brought to life in the mouths of speakers, the ears of listeners and
the eyes of readers by the contemporaneous flux of corporeal signs with
which it is always already inhabited.
Thus, meaning is always in part corporeal, but never simply corpo-
real. The signs of the body always accompany, and are accompanied by,
other signs – including the signs of language. Meaning is intersemiotic –
produced from the contingent intersections of multiple sign systems –
and heterosemiotic, intrinsically hybrid, composite and diverse.
Analytically, there are two problematic tendencies that this sophisti-
cated theory of meaning neutralises: the reductionist tendency to treat
meaning as simply deriving from bodily sensations, and the cognitivist
tendency to treat those sensations as meaningful only through the inter-
pretations made of them. Ruthrof’s theory addresses the complexities
ignored by both tendencies, showing how the signs of language always
gain part of their meaning from their contingent conjunctions with
sensory and corporeal signs produced by embodied, non-linguistic proc-
esses. Although feelings are already meaningful signs in themselves, it
is only when they come together with other (typically linguistic) signs
that they achieve a comprehensive meaning that can be both reflected
upon and communicated efficiently.
You might have no ready name for how you feel when a loved one dies.
Quite possibly, no mere word could do justice to the rawness, depths and
convolutions of your felt experience; in the words of one bereaved mother,
‘the stereotype that “words fail” is completely right’ (Hooghe et al., 2011,
p. 911). Indeed, the sheer distance between how you feel and what you
are able to say may appear so great that the merest suggestion that your
feelings could be adequately represented in words might be experienced
as insulting (Nightingale and Cromby, 1999). Nevertheless, you will not
doubt that you are feeling something (‘feeling numb’ is still a feeling)
nor that how you feel is meaningful. Moreover, even as you struggle to
identify words to describe how you feel, you will have a ready sense of
the words that are not appropriate: joy and satisfaction, for example, are
unlikely to loom large for many people in such circumstances.
Feeling Bodies 65
Feelings and early bereavement
We have described how feelings can be conceptualised, and explained

that their meanings are bound up with, but not reducible to, those of
language. We will now present some data showing how these concepts
can inform an empirical analysis of the feelings associated with early
bereavement. Our strategy – taking analytics usually deployed within
linguistic epistemologies and using them to generate interpretations in a
conceptual context that emphasises feelings or emotions – can be called
an affective–textual analysis (Cromby, 2011). Because the meaning of
feelings is necessarily hybrid – in Ruthrof’s terms, intersemiotic and
heterosemiotic – such analyses will frequently adopt a mixed or hybrid
methodology. Our analysis exemplifies this kind of hybridity: whilst
the data were gathered using the method of memory work, the analysis
borrows techniques from discursive psychology (Edwards and Potter,
1992).
Memory work (Haug, 1987) is an empirical method closely associated
with the tradition known as German Critical Psychology (Tolman, 1994).
It is unusual because it attempts to dissolve the power relations between
researcher and participants: the researcher participates by providing
data which gets equally included in the analysis, and all participants
are at least nominally involved as co-researchers. In the first stage of a
memory work study all participants write a memory, in response to a
researcher-designed prompt and following a particular format: in the
third person, with as much detail as possible, but with no explanation
or justification – simply thick description. The written memories are
circulated for the group to read and reflect upon. Shortly afterwards,
they meet to discuss their memories; this meeting is audio recorded. The
researcher(s) – ideally, the entire group – treat both the written memo-
ries and the audio-recording as data, and memories are first examined
individually, then cross-sectionally. Analysis pays particular attention to
contrasts, contradictions, ambiguities, inconsistencies, clichés, gaps and
absences, and can involve further meetings where participants reflect
upon their own previous discussions, so generating further iterations
of data. The aim is to produce rich understandings of identity forma-
tion and subjectification by exploring how individuals are positioned
within, and make use of, social structures, discourses and (conceptual
and material) resources.
Amongst the analytical strategies from discursive psychology that
we mobilise in relation to our memory work data is the ‘Jefferson lite’
transcription notation, which we use to render visible the pauses,
intonations, pitch shifts, temporal changes and other vocal modula-

tions within talk. Recruiting the process ontology of feeling described
above, these features are treated as audible traces of ways in which feel-
ings already inhabit talk. They are understood as elements of embodied
social processes entwined with discursive interaction, chaining back-
wards to prior moments whilst simultaneously feeding forward to
co-constitute future potentials (cf. Brown and Stenner, 2009). Feelings
frequently operate at different speeds and rates of acceleration to the
movements of language (Connolly, 2002); moreover, according to
circumstance, they get enacted within different temporal registers,
temporalities which can themselves can be meaningful (Stern, 1985).
Consequently, there is no presumption that these features always
depend for their meaning and function on features of the utterances
and feelings that closely preceded them; instead, analysis engages with
observed temporalities as they are manifest in, through and in relation
to, language.
The data were gathered as part of an undergraduate project using
memory work to explore UK psychology students’ experiences of early
bereavement. Two memory work groups were convened, discussing a
different aspect of the experience of bereavement; the prompts were
‘finding out’ and ‘talking to others’. Participants gave informed consent
and were eligible for the study if at least five years had elapsed since
their bereavement; six people took part, aged between 20 and 25. In
these extracts anonymity has been preserved by changing all names
and other identifying features. The study was approved by the Ethics
Committee of Loughborough University and complies with the ethical
requirements of the British Psychological Society. These extracts were
chosen because they display various aspects of feeling in relation to
bereavement, showing both how feelings are talked about and how,
simultaneously, they lend meaning to what is said.
1 MG1: 586–591
586 Emma: I think because as well we have written >very specifically about the moment you
587 found out< I think in that moment a lot of what’s coming out is conf↓u:sion and a bit
588 of like ambiguity about how to feel. I think maybe as the weeks and the days go by
589 like then the relief and the guilt and the anger start to come, but I think like in that one
590 moment like (.) it’s just a sh↑ock and it’s just a bit of like ‘ooh how am I supposed to
591 feel?’
Here, Emma describes some of the complex mixtures of feeling that

characterised her experience of bereavement. Emotional feelings of
Feeling Bodies 67
relief, guilt and anger are all identified, together with less distinct
bodily states of shock and confusion. The ‘ambiguity’ of how she
‘should’ feel is noted on line 588, and her description ends by power-
fully posing the rhetorical question ‘how am I supposed to feel?’ On
line 590 the discourse marker ‘like’ followed by a brief pause also
perhaps indicates some awareness that normative conventions of
feeling are relevant, albeit that these are opaque to Emma. This might
be associated with her largely unspeakable feelings of relief, which –
although common when someone dies after a protracted or difficult
illness – are frequently difficult to acknowledge. Thus, the extract illus-
trates some of the complexity of feelings associated with bereavement;
some of the ways in which these feelings are bound up with normative
conventions and local moral orders; and some of the ways in which
our feeling bodies are positioned by, and responsive to, these conven-
tions and expectations.
2 MG2: 308–314
308 Lucy: I ↑just remember feeling like (.) I didn’t know how (0.4) anything was going to
309 change (0.8) like I couldn’t see myself feeling any better about it because it was
310 so soon after he’d passed away. I don’t know I kind of got like >like last discussion we
311 talked about< our world s:topping, it kind of felt like mine had stopped and I didn’t
312 know how it was going to st↑art again. I think I just used to sit and ↑lie there and be
313 like >‘well what am I going to do with↑out him?’< But I suppose over time (0.2) you
314 just learn (0.2) to live without them °.
In extract 2, although conventional emotion referents such as grief are

entirely absent, Lucy powerfully evokes some of the embodied feelings
associated with the loss of her grandfather. The long pauses on lines
308–9 immediately charge her description with weight and gravity, and
are followed by sequences of emphases and pitch shifts that enact some
of the feelings she experienced. For example, on lines 311–312 the discus-
sion of the metaphor of ‘the world stopping’ contains multiple emphases
that endow it with a notable, if indistinct, charge of feeling. The effect
is magnified on line 311 where the extended consonant on ‘stopping’
momentarily reproduces the feeling of time slowing down that she
wishes to convey; and on line 312 by the upward pitch shift in the word
‘start’, which endows this possibility with a felt sense of improbability.
Similarly, on line 313, the pitch shift in the word ‘without’ enacts a trace
of the embodied feelings of loss and confusion her question conveys.
At the end of the extract the two pauses on line 313 add a querulous
force to her supposition that you ‘just learn to live without them’, an
effect further magnified by the softer delivery of the last four words. The
temporal shift that Lucy describes verbally is therefore mirrored by a
flow of feeling that changes and fades during her description, simultane-
ously enacting bodily the transformations her words represent.
3 MG2: lines 756–760

756 Melissa: I remember feeling awful at the funeral because I was so:bbing going in >and
757 stuff< and my ↑auntie whos erm (0.4) who ↓wasn’t related to <my Grandad>
758 (.) I ↑set her off and I just remember feeling awful thinking people are seeing
759 me like this and it’s upsetting other people and I was like .hhh I couldn’t stop
760 myself though.
In extract 3 Melissa’s memory of her grandfather’s funeral recounts an

instance of emotional contagion, describing how her own sobbing ‘set
off’ her aunt. Melissa’s account also illustrates how feelings can evoke
other feelings; Melissa felt ‘awful’ both because of her own sobbing,
and because of her aunt’s upset. On line 756 the extended vowel on
‘sobbing’ bodily enacts a fragment of the feeling associated with her
uncontrollable crying, as does the inbreath on line 759 (.hhh). These
effects are given further force by upward pitch shifts that link ‘auntie’
with ‘set’ (line 757–8); by the slower delivery of ‘my Grandad’ (line 757);
and conversely by the rapid delivery of ‘and stuff’ that brackets off this
vague phrase and focuses attention instead on the feeling-laden details
of her memory.
4 MG1: lines 802–806

802 Lucy: But I suppose (.) the other ch↓ange is >not only that my Nan is less upset but< we
803 tend to talk about more positive thi:ngs. You know like we rarely would now talk
804 about the pain that he went through (.) or the suffering or how it was for my Nan. We
805 now talk about like (.) more of the positive, fun ↑birthdays >and ↑parties and great
806 times< we had so I don’t know there’s kind of been a shif:t.
Finally, in extract 4, Lucy reflects upon how feelings and family conver-
sations have changed somewhat in the years since her bereavement. The
temporality of feeling runs through the extract, with two consecutive
three-part lists creating a powerful contrast between then (talk about
pain, suffering, how it was for Nan) and now (talk about birthdays,
parties, great times). The feelings enacted within this contrast become
visible on line 805 in the upward pitch shifts before ‘birthdays’ and
‘parties’, both of which evoke the lighter mood associated with these
events; and on line 804 in the pause after ‘went through’ – a short
silence that adds considerable feeling to her talk of pain, whilst never-
theless allowing its details to remain unspoken.
Feeling Bodies 69
Conclusion
The meanings of death arise contingently at the intersections of multiple

discourses and narratives and their associated resources and practices,
where they function as points of both articulation and conflict. At the
same time, these discourses, narratives and practices include organisa-
tions of feeling that co-constitute the meaning of death through the
experience of the living body. To emphasise this is not to challenge the
constructionist analysis of death, but to extend and situate it. We extend
it by including the socialised body in the processes of meaning making,
producing from this meshing of feeling and discourse a minimal notion
of subjectivity adequate for many social scientific or psychological
analyses. Simultaneously, we situate the constructionist analysis of
death by locating it within the lived experience of embodied persons,
persons whose bodily potentials – including the potential, one day, to
die – continuously regulate the narrative positions they occupy, the
discourses they deploy, the metaphors and tropes they use to make their
experience intelligible to themselves and others. The process ontology
we have outlined does this without lapsing into individualism, senti-
mentalism or naive humanism; for these reasons it may be useful in the
analysis of all experiences of living and feeling.
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Part II
Death in Popular Media
4
Representations of Corpses in
Contemporary Television
Tina Weber
Introduction
Before the twenty-first century, crime shows tended to show victims only
at the crime scene. With the rise of TV shows like CSI and Six Feet Under,
the dead body became a central actor in the plot. Dead bodies were not
only at the crime scene now, but also in the morgue, the embalming room
and most often in the pathology lab. The dead body – especially when
represented in visual media – is now indeed ‘treated as a highly spectac-
ular object, and the dead body at autopsy becomes the most spectacular’
(Klaver, 2006, p. 140). Before the turn of the century there was only one
show on TV (Quincy, M.E.) that presented corpses in the pathology lab.
These first representations of corpses stand in contrast to the represen-
tations in TV shows from 2000 to 2010. This contrast is marked by a
shift towards a greater visibility of corpses, which are now far less often
obscured. The increasing visibility of corpses on TV is interesting as mass
media are to be regarded as key spheres of meaning making, reproducing
as well as shaping more encompassing societal conceptions of death.
Given that most people have never been within a pathology department
or attended autopsies, media images from crime TV shows create a visual
experience from which they were previously excluded.
Surprisingly, however, scientific research on the subject is limited.
The initial work on death and its depiction within media came from
Ariès (1984), Daermann (1998) and Bronfen (1992), who focused on
print media but rarely addressed audio-visual aspects of representation.
While others addressed themes of death, they neglected the body of
the deceased (McIlwain, 2004; Akass and McCabe, 2005; Klaver, 2006;
Kellehear, 2007). Only Foltyn (2006) has explicitly focused on the depic-
tion of dead bodies in contemporary TV shows.
75
76 Tina Weber
This chapter responds to the lack of sociological attention to the

representation of the dead body by looking at depictions of corpses in
two media genres – fiction and documentary. In so doing, a particular
view is adopted on mass media as one of societies’ key spheres where
meaning is brought into circulation. As Carpentier and Spinoy (2008)
argue, mass media are important discursive machineries of the social
that provide people with the material to make sense of the world
surrounding them (Schwan, 2005). As media are inseparable parts of
the social, they are constituted by a broader discursive reality, but are
at the same time constitutive of that reality. For this reason, an analysis
of media contents should not focus on the (isolated) meanings that
circulate within a particular text, but should also take into account the
wider social/cultural/discursive context in which a text is embedded.
According to Luhmann, then, one can ask:
[ ... ] how do mass media construct reality? Or, to put it in a more

complicated way (and related to one’s own self-reference!): how can
we (as sociologists, for example) describe the reality of their construc-
tion of reality? The question is not: how do the mass media distort
reality through the manner of their representations? For that would
presuppose an ontological, available, objectively accessible reality
that can be known without resort to construction; it would basically
presuppose the old cosmos of essences. (Luhmann, 1996, p. 12)
We must therefore embed fiction and documentary representations and

constructions of the dead body within a broader discursive–historical
reality – marked by an increasing ‘civilisation’ process through which
the body becomes ‘disciplined’ – where death and the dead body are
given meaning to. At the same time, it remains crucial to note that media
are not mere platforms where meaning becomes circulated. Indeed,
media are very specific discursive machineries through which existing
discourses become reproduced, negotiated and contested, following
logics of aesthetics that are specific to certain media genres. Arguably, it
can be expected that fiction and documentary will bring into circulation
(at least partly) different representations of the dead body.
Another theoretical premise underlying this chapter is that picto-
rial elements are essential constituents of discourses. Drawing from a
Foucauldian definition of discourse, it can be argued that discourses are
never limited to written texts, and that there are no plausible reasons to
distinguish between textual and pictorial images (Mayerhausen, 2006). A
Foucauldian analysis of social interaction must embrace not only words
Representations of Corpses in Contemporary Television 77
but also images, which are regulated by, for instance, media procedures
of selection and organisation.
According to Mayerhausen (2006, p. 81ff), Foucault particularly
focused on the term dispositive, referring to those mechanisms deter-
mining what can or cannot be said in a particular society. Therefore,
Mayerhausen describes images as carriers of knowledge that represent a
discursive order in which socio-cultural conceptions influence pictorial
discourses and vice versa. What is shown and what is not shown in an
image is connected to cultural preconditions. The pictorial discourse is
therefore not characterised by abundance, but scarcity. By identifying
the procedures of scarcity and by focusing on how specific images circu-
late and generate a discourse, one can study the constitutive elements of
socio-cultural phenomena: ‘A task that consists of not – of no longer –
treating discourses as groups of signs (signifying elements referring to
contents or representations) but as practises that systematically form the
objects of which they speak’ (Foucault, 2002 [1969], p. 49).
Media images of the dead represent the dead with certain codes, which
generate and reflect social conceptions of death. Arguably, media repre-
sentations of the dead can be seen as discursive practices. Subsequent to
Maasen et al. (2006) the analysis of pictorial discourses revolves around
the question as to what kind of images can (or cannot) be seen by whom,
how and at what time. In the following, I will ask what kinds of images
are shown and what kinds of images are not shown; which representa-
tion codes of death can be identified, and which representations are
excluded from the pictorial discourse. The examination of images will
be carried out by means of a structural–hermeneutic symbolic analysis
reviewing comprehensive data that will not only cover the content of
the image, but also techniques of staging. Before proceeding to the anal-
ysis, however, it is necessary to provide some more (theoretical) back-
ground on the aesthetics of the body in contemporary societies.
Aesthetics, the civilised body and the visibility of death
Images of dead bodies on TV shows conform to a specific visual

aesthetic.1 Here, the term aesthetic refers not only to beautified dead
bodies, but also to the selective application of contradictive stimuli,
such as the Y incision, the lethal wound or blue shimmering skin. These
artificial stimuli are not exactly beautiful, but serve to supplement and
enhance beauty. Artificial stimuli signifying death serve to highlight
the beauty treatments applied to the body by contrasting disgust and
death with what would otherwise be aesthetically appealing. A basic law
78 Tina Weber
of aestheticisation says that perception needs not only stimulation but

also disruptions and breaks (Welsch, 1996, p. 57). Constant stimulation
provokes boredom. Therefore, the aesthetic needs interruptions from
beautification; otherwise the aesthetic turns into anaesthesia. Nelson
Goodman (1995)2 echoes the same idea and states that the aesthetic also
includes ugliness; allowing for the development of a scale for aesthetic
values.
Since beautiful images are not always pretty but evidently ugly, the
term ‘beautiful’ leads only to another deceptive term for aesthetic values
(Goodman, 1995, p. 235)3. The audience’s experience is indeed saturated
by ‘model’ bodies. The actors selected to portray the deceased are of
course not dead themselves. They are selected very specifically for their
appearance on screen. The application of contradictive stimuli coun-
teracts the possibility of saturation. Natural signs like old age, illness or
impurity, and deficiency that undermine contemporary beauty stand-
ards are seldom displayed. On TV, the manipulated dead body can
therefore only be distinguished from the manipulated living body by
the specific depiction conventions that include inflicted wounds and
the rigid supine posture of death. The rigour of beauty regimes does not
stop at death.
An analysis of corpse representations sheds light on the way contem-
porary media’s ideals of beauty come with a particular construction of
the dead. According to Menninghaus (2007, p. 272), whose conclu-
sions are based upon his evaluation of several empirical studies, media
depictions create a constant consumption of ‘manipulated’ bodies. The
constant depiction of deceased bodies of models reduces the visibility
of the existing variety of dead bodies. Posch (2009, p. 186ff) agrees with
Menninghaus (2007), stating that media support the implementation
body standards, privileging certain body types over others. Zettl (2002,
p. 12) emphasises the specificity of media aesthetics and their role in
constructing social reality, as indeed these aesthetics are ‘concerned
with how we, as audience, perceive certain aesthetic variables and their
combinations in television and film productions’. He goes on to argue
that ‘in moving from idea to image, the aesthetic and technical require-
ments of the medium determine to a large extent on how the message
is shaped’.
Historically, the socially acceptable shapes of living and deceased
bodies – brought into circulation through logics of media aesthetics –
have been altered by social transformations. Norbert Elias described in
‘The Civilization Process’ (1939) the historical transformation of rela-
tions between structures and individuals concerning the control of
emotions and appropriate behaviour in Western Europe up to the nine-

teenth century. He detected a long-term transformation of personalities
due to the transformation of social structures.
Over this time, a modern social structure developed, and alongside a
society whose individuals were more connected and dependent upon
one another. Based on these new interdependencies, Elias identified a
greater sensitivity regarding our own and other individuals’ actions and
reactions. The changes accelerated the advancement of the thresholds
of shame, embarrassment and repugnance, especially regarding our own
bodies and those of others (Elias, 1980, p. 397). The awareness of the
body’s appearance and bodily functions gradually increased over time,
and turned from being externally constrained into highly controlled
through internalised self-constraints (Elias, 1980, p. 366). This threshold
concerns multiple bodies. By way of example, the deceased body at a
viewing is empowered to elicit embarrassment and shame in the living.4
This is why efforts are made to uphold bodily standards, pursuing a beauty
ideal by guarding and staging the dead body in a proper manner.
The civilised body ideal seems to be enshrined in television shows,
which deluge audiences consistently with a seemingly infinite display
of beauty standards applied to both the living and the dead. While it
is increasingly argued by scholars that ‘much of what we know about
death comes through the media’ (Hanusch, 2010, p. 3), there is indeed
no consensus on the fact whether media representations of death and
the dead should be described in terms of a new visibility of death.
The popular ‘new visibility of death’ thesis is for instance rejected by
Belting, who points towards an accomplishment of the invisibility of
death (Belting and Macho, 2006, p. 248ff). Belting argues that images of
the dead do not represent the dead, but hide the dead with (civilised)
substitutes. Since there is no real reference point, no dead but a replace-
ment of the dead is represented. He explains that humans have always
produced medial masks of those things they refuse to see. The unwanted
is hidden and replaced by something wanted. This ‘substitute’ is repeat-
edly shown on television for consumption and will be analysed in the
following.
Material and methods
The research material consists of fifteen television shows that were

broadcast after the millennium. The shows are Six Feet Under, CSI Las
Vegas, Crossing Jordan, Bones, Castle, NCIS, Dead Like Me, Pushing Daisies,
Heroes, Dexter, Tru Calling, Dr. G, Autopsy, North Mission Road and Family
80 Tina Weber
Plots. The analysis includes all shows from 2001 until 2009, yet in the
following I will highlight the most successful TV show, CSI. Additionally,
Quincy, M.E. is utilised as an early model and the documentary Autopsy
was selected to provide balance by using actual documentary footage
against film conventions of fictional shows.
The common criterion for selection is that the dead figure remains
central to the plot and becomes an object of focus for the professions
(pathology, police, undertaking, etc.) within the show.
In the following I will present a television show with modern corpse
depictions to showcase codes of representation and then compare this
fictional TV show with the documentary asking: What are the codes of
representing the dead body in fiction TV show and in documentary?
The number of corpse representations has risen enormously and gener-
ated a huge variety of images in different genres of television programs.
The research revealed a variety of depictions, which encompass:
1. The simulation of the authentic with no images of the dead, but

photographs of real decedents (Documentaries such as North Mission
Road),
2. The traditional depiction with either no images of the dead or images
with covered dead (older TV shows such as Quincy in the twentieth
century),
3. The modern depiction with plain images of aesthetic corpses (new TV
shows such as CSI which were produced after the millennium) and
finally,
4. The breach of style depiction with images of modern depictions
including abstract elements (new Cable TV shows such as Dexter
which were produced after the millennium). The modern depictions
dominate the pictorial discourse.
As I aim to draw conclusions about the (potentially) different codes of

representation in two media genres, the notion of genre requires some
more explanation. According to Hickethier (1993, p. 151), a genre is
labelled as a product group when social or geographical location, specific
milieus, character constellations, structures of conflict, specific story
plots or special specific emotional or affective constellations are recog-
nisable. With the analysis, I aim to show how popular television shows
use specific methods of portrayal by comparing these shows to a docu-
mentary, which ostensibly aims to use similar equipment to portray an
unadorned and ‘authentic’ representation. I selected Michael Kriegsman’s
documentary Autopsy: Through the Eyes of Death’s Detectives (2000),
because it presents a complete and uncensored autopsy conducted by

Dr. Thomas Noguchi, a former Los Angeles County coroner at the UCLA
Hospital in Los Angeles. I will compare the documentary footage with a
TV crime show sequence from CSI Las Vegas: Down the Drain (Season 5,
Episode 2, 2004). The objective of the analysis is to reveal the different
representations of an autopsy within these two genres, that is, to detect
the media aesthetic techniques used within the visual and audio levels
in the fictitious television show. The two DVDs for Autopsy have a
play length of 100 minutes; the autopsy scene takes approximately 40
minutes. The documentary Autopsy consists of three parts with a respec-
tive length of 12:29 minutes, 19:50 minutes and 06:50 minutes: First the
exterior examination and then the interior examination, consisting of
both the opening of the upper body and the opening of the skull.
As the focus of the analysis is the representation of corpses, an
adequate analytical technique was required that covers all necessary
aspects simultaneously. An extensive examination of various analytical
schemata resulted in the development of an analytical framework that
combines the hermeneutic–structural symbol analysis of Mueller-Doohm
(1997) with the analytical techniques prescribed by Kuchenbuch (2005)
and others regarding the visual and audio level,5 providing a frame that
is sufficiently broad to cover all the necessary subjects while flexible
enough to exclude redundant information. This descriptive framework
resembles Zettl’s (2008) five dimensions for the examinations of media
aesthetic techniques (including details of technical images, that is, all
the camera and audio-visual techniques used within a shot (Trebess,
2006, p. 255) in audio-visual material, which is why that framework
will be used for the analysis. The structural–hermeneutic analysis starts
with an in-depth description of all media aesthetic techniques and the
content of the image. The second step consists of a reconstruction of
the detailed description so as to generate connotative meanings. The
third step consists of an interpretative socio-historical placement of
the phenomenon. Due to the rather extensive form of the description
protocol, I can only present here the reconstruction (which is based on
the description protocol) and the interpretation.
Film analysis
Reconstruction: Autopsy (documentary)

The initial analytical level is visual. This appertains to light design,
camera, setting/room space relations, and the story line. The light is
82 Tina Weber
hard; the key light is of a normal style with fill and back light. Cast
shadows are present. The colour is natural with no filter and no special
effects. The room is suffused with bright hard light. The colours of a
silver table, pink/white/reddish skin, white towels and yellow/red tissue,
are all very saturated and appear at times overly luscious. All objects in
the front of the shot are clearly visible.
A cross dissolve is used when the camera cuts to different viewpoints.
Sometimes the camera moves and takes panning shots. Different camera
perspectives like high-angle, low-angle, and bird’s-eye-view are used, as
are different shots like medium, medium close-up and close-up.
The setting consists of a body on a silver table. It is a naked, old,
overweight woman with rumpled hair, who gleams moistly on the
damp table. Her face is covered either by a towel or with VFX. Her
genitals are covered in the same way, and pubic hair is visually
evident. Her nipples are similarly covered with VFX. At the end of the
procedure the upper body and the head are open, with all the organs
removed. Other objects include the lecturer room seats. A little table
with medical tools is placed on top of the silver examination table. In
the background there is an X-ray illuminator, TV screen, room divider,
and tiled yellow walls. As the procedure progresses, we also see three
different people in the background: two doctors and one technician,
who wear scrubs and protection suits with surgical masks. They move
and pull the body around exposing the buttocks and breasts. The tool
table displays the fresh organs, bloody towels, tools, a red tube and a
bucket with reddish water, containing other organs. To summarise,
the corpse, the people assisting and the hospital context are all clearly
seen.
The entire autopsy procedure of the decedent is documented, including
the exterior coroner’s examination and the interior examination by the
two physicians and assisting technician. The pathologist is hacking,
hoisting, cutting, scratching, pulling and lifting organs, tissue and
blood. The assistant drills around the skull. In between this, the organs
are examined and sliced into pieces on the extra table. Meanwhile, the
pathologists explain all the steps in a question and answer game with
the assistant doctor. All the steps can be seen, even the final sewing up
of the body’s skin.
Specific codes of representations can be found then in the different
categories. In the light and colour categories, hard light dominates over
a normal lighting style. Cast shadows and the yellow/reddish colours of
the corpse are seen. Two different cameras (ceiling and crane) provide
movements back and forth at different angles (high and straight). The
shots differ according to the autopsy procedure, sometimes medium,

medium close-up or close-up. The setting consists of a corpse, physi-
cians and technicians, a silver autopsy table and a water bucket. The
corpse is placed in the front of the shot. The examiners stand behind the
table with the corpse. A physician performs the autopsy and talks to the
assistant doctor. A technician supports the autopsy procedures. Their
conversation is audible as are the noises from the water bucket, the drill
and the breathing of the doctor performing the procedure.
Reconstruction: CSI (crime TV show)

This documentary style can immediately be contrasted with a crime
fiction style. I selected CSI because of its popularity (determined by its
high audience rating). It is, therefore, one of the dominant modes of
representational transmission. One of the longest and most explicit
autopsy scenes is approximately two minutes (08:24–10:33). It shows
a young scientist, who is feeling challenged by his first autopsy. The
filmmakers in the documentary also described in interviews their ‘first
autopsy’ challenges. This similar perspective was the decisive factor in
the selection of the autopsy scene from the episode ‘Down the Drain’
(CSI Las Vegas: Season 5, Episode 2). The additional criterion was that it
was representative of autopsy scenes within the entire show and is not a
singular event. This episode has a total play length of 42:17 minutes.
The lighting and colour design consists predominantly of soft light, fill
and back light, a brightened low key, with no shadows but with a special
bluish filter colour. The use of soft light induces a diffused atmosphere
in the scenery. The diffused atmosphere generates a darkly obscured
effect. The use of a brightened low-key style additionally generates a
night-time atmosphere, evoking loneliness and gloom. Shadows are
hardly seen at all. The filter creates a scene that is dappled with varying
blue light levels. The symbolic meaning of this bluish colour is coolness.
It is the colour of distance, rationality and quietness (Seer, 1992). It is
also the colour of dreams. Colourist use in combination with forensic
pathology and corpses seems, in comparison with other episodes, to be
a topos: blue pathology.
The camera cuts are hard. The camera movement uses zooming and
panning shots. The perspectives entail all possible angles. The shots
vary from medium to medium close-up and to close-up. Very often,
the montage consists of shot-reverse-shot. The producer very often uses
the shot-reverse-shot montage as the protagonists discuss the manner
of death in the presence of the corpse. Close-ups of the faces of the
protagonists as well as the corpse are frequent.
84 Tina Weber
The setting consists of the table on which a seemingly blue-coloured

body lies. This silicone body is supposed to be the corpse of a young
man. The table is clean and dry and his genitals are covered solely by
a sheet. His hair is dry and parted to the side. We see an autopsy being
performed on the upper body. Three people stand in the scene and
represent a pathologist, a forensic doctor and a laboratory technician.
They wear aprons and the pathologist has an additional facial shield.
The pathologist cuts the body and opens it. From the thorax he removes
the ribs and the heart.
Again, specific codes of representation can be found in the different
categories. The setting differs from the documentary. The corpse always
remains in the same position on the silver table, with his private parts
covered. Behind the clean and dry silver table, there is a stylish bluish-
silver surround cabinet with cool, glowing chambers and a dimmed
surgery light.
Compared to the documentary, CSI displays a soft light and bright-
ened low-key lighting. A blue filter, unsaturated colours and silver domi-
nate the picture. The camera often uses shot-reverse-shots, panning
shots and zooms, high and low angles, medium shots and close-ups.
The communication between participants revolves around the cause of
death and a possible feeling of sickness. Music creates an ethereal sound-
scape inducing a surreal and mysterious atmosphere. VFX noises are
used when the doctor cuts the skin (thorax). During the cut on the chest
with the scalpel, an artificial noise is audible (like scratching on paper).
This noise is also used during the cut on the neck. The sound of water
drops and the sound of the removal of the chest plate are very loud.
Other noises include the groaning of the pathologist and the character
conversations, which resonate around the room. The artificial noises are
clearly associated with disgust, as is the groaning of the pathologist. The
corpse is not in the foreground but instead between the examiners, who
discuss the cause of death, personal matters and perform a few autopsy
steps.
Interpretation
Aestheticisation takes place through different techniques within the two

genres. These techniques are deployed on a visual level through certain
filmic methods, such as camera, lighting, colours, staged objects, the
storyline, and through an audio level via mood-inducing tones, music
and artificial noises. Let us take a closer look at the most prominent
differences between the two genres.
The most significant but perhaps least obvious difference is the storyline.
While the documentary showed every single step of the autopsy, CSI
showed approximately two minutes of the autopsy scene. They showed
a cut through the skin and the aorta, as well as the removal of the chest
plate and heart. These actions lacked the visualisation of bodily move-
ment depicted in the documentary. The cutting of the muscle tissue
from the skin, the cracking of the chest bones, the scooping out of the
blood and the examination of the heart by cutting it into slices was visu-
ally absent. The FCC, which controls TV show production scripts, checks
for scenes that are too graphic, and vetoes them before the program is
aired. It is possible that this could account for the difference. If one
could determine crucial scenes, then CSI lacks the more crucial graphic
exposure of autopsy procedures. Thus the exclusion process in the picto-
rial discourse, by which aestheticisation occurs, is made manifest.
Secondly, the figures, such as the embellished corpse on the TV show,
suggest another aestheticisation effort. The documentary uses an elderly
naked obese woman, a subject that almost no television show would
portray. The inconsistent covering of body parts, for instance the face or
genitals, reveals that issues of dignity, piety and modesty pertain even to
the dead. In contrast, the corpse in CSI is a typical young athletic man.
Within the two minute autopsy scene, the actor-pathologist has cut and
opened the upper body and removed the chest plate, ribs and heart.
The corpse displays deadly wounds and some injuries on the face, but
no signs of decay or untidiness. This is in no way an atypical scene for
a television show of this genre. The cast of attractive young actors and
actresses6 is, therefore, just another example of aestheticisation efforts
on the producers’ part.7
Thirdly, the setting of the corpses also differs between the two analysed
genres. In the documentary the setting is busy and somewhat fraught
with distracting details (lecture seats, tools, X-ray machinery, screens,
room dividers, yellow tiled walls and people moving in the background).
In contrast, the background in CSI only displays illuminated cupboards,
a surgical lamp and medical tools and body chambers with lights inside,
allowing for a glimpse of shadowed corpses. These objects are fewer in
number and never distract from the actor-corpse. Additional setting
elements, such as the silver autopsy table, appear to be the stereotypical
objects of forensic science replacing the formerly ubiquitous foot tag.
The silver autopsy table in the documentary is a working desk and there-
fore wet, covered not only with the corpse but also with blood, bloody
towels, tools, tubes, a basin filled up with reddish water, and organs. The
silver autopsy table in the TV show is, however, always shiny, clean and
86 Tina Weber
dry. Here the dead body is always shown in a clean and therefore safe
space, on a tidy table and in a sober scientific environment. The silver
autopsy table plays a major role in narrowing down any possible menace
that might spread from the corpse by its noticeable cleanliness. Indeed it
is this shining silver frame surrounding the immaculate athletic young
man that suggests another aestheticisation effort.
Fourthly, the visual effects concerning light and colour create different
atmospheres (Seer, 1992). According to Zettl, colour associations are
culturally learned. Lighting and the use of certain colours generate
moods and atmospheres, which are understood as characteristics of
the scene, act or actor. They can also guide the viewer’s attention to
certain areas and actions. (Zettl, 1973, p. 97) The common three-point
lighting technique is used in both genres; its brightness changes the
colours in the scene. The more introverted a scene, the less colourful it
becomes. In the documentary, we see luscious colours of yellow, red and
white, because the documentary uses floodlighting, a hard, bright light.
Everything in the scene can be clearly identified because of this. In CSI,
the colours remain unsaturated because of the use of soft light (diffuse), a
brightened, low-key style and a transparent blue filter that leaves hardly
any possibility of extraneous object recognition. Everything appears to
be mysterious, vague and blurred. The blue filter enhances the artifici-
ality of the scene. This low-key style is standard practice for scenes of
crime or tense drama. It is also the preferable style for the illumination
of dark rooms at night, to generate loneliness or a threateningly grim
atmosphere. The cool colours of blue and grey are commonly used in
media for the illustration of distance, rationality and discipline as well as
calmness and inner contentedness. This extends sometimes to dreams,
ecstasy and transcendence. This idiosyncratically staged secrecy of these
pathology scenes is the most obvious and recognisable aestheticisation
code within television shows.
On an audio level, finally, the differences between the documentary
and the TV show appear in all three items layers of communication,
noise and sound. Within CSI, the communicative intent of the show
is dramatic, passing on information about the manner of death, the
emotional state of the protagonist, and the plot. The communication
in the documentary revolves solely around the examination procedures,
autopsies in general, and the cause of death.
The emotions of the scientist are questioned by his seniors, who fear
he will be overwhelmed by disgust, and vomit during his first autopsy.
By staging ‘the first encounter with a corpse during an autopsy’, the
producer not only sets up the common visual components for some
kind of dark secrecy, but also transmits it to the audience, through

the protagonists’ communication and their disgust of the particular
setting.
This staged stimulus joins the artificial cutting noises and removal
noises. During the documentary, only a few noises of water, drilling and
breathing can be heard. None of them resemble the soundscape in the
TV show, where the additional noises used appear especially loud and
artificial, since no real body is used.8 According to Zettl (1973, p. 330),
television sound has three functions: ‘[ ... ] to supply essential or addi-
tional information, to establish mood and aesthetic energy, and to
supplement the rhythmic structure of the screen event’. The ethereal
music in the TV show supports the generation of an exceptional atmos-
phere of surrealism and mystery. To summarise, most of the audio tech-
niques used in the TV show are normally used to evoke fascination and
creepiness. The polished quality of the soundscape can, therefore, be
clearly recognised as another aestheticisation effort.
Conclusion
TV shows of the twenty-first century employ specific codes when repre-

senting dead bodies. With this analysis, I demonstrated that in contrast
to the solitary documentary, CSI, a popular crime TV show, made use
of massive media aesthetic techniques on visual and audio levels. Due
to these aestheticisation techniques, some characteristics of the corpse
openly seen in the documentary, including signs of age, impurity and
lack of self-control, stay covered in the TV show. The popular TV shows
an aesthetically pleasing body, described by Menninghaus (2003, p. 7)
as follows:
[ ... ] elastic and slender contours without incursions of fat, flawless

youthful firmness and unbroken skin without folds or openings,
removal of bodily hair and plucked eyebrows forming a fine line, flat
belly and ‘trim’ behind [ ... ]
It can be argued, then, that CSI reflects contemporary criteria of beauty.

The dominant codes of representation and aestheticisation result in a
pictorial discourse that privileges the slim, athletic, youthful, yet dead
body, which can visually only be distinguished from the living body
through the display of lethal wounds and Y incisions, functioning as
signifiers that represent death. In contrast to the aesthetically beautiful
dead body, ‘Folds, wrinkles, warts, “excessive softness”, visible or overly
88 Tina Weber
large bodily openings, discharge of bodily fluids (nasal, mucous, pus,

blood), and old age are registered, on the criminal index of aesthetics, as
“disgusting”’ (Menninghaus, 2003, p. 7).
According to Menninghaus, the deviation from the ideals of beauty,
by transgressing expectations, serves solely to increase attention (ibid.,
p. 270), since continuous and monotonic standards of beauty always
bear the danger of saturation and thus inattention on the part of the
viewer. Therefore, made-up bodies with lethal wounds dominate scenes,
sometimes supplemented with unidentifiable formless piles of skin,
bones and organs which are colourful and gleam, displayed in state of
the art high-tech pathology environments.
Dominant representations of the dead body in daily television cannot
be isolated from broader transformations, as captured by Elias’ thesis
on the civilisation process. According to Villa (2008, p. 8), the urge to
design the living body as a project of the social self is never just a subjec-
tive, private and individual matter of autonomous individuals. Rather,
she argues, audio-visual media, conveying particular body ideals, fosters
this urge. Bodies have to appear healthy, young and fit to indicate will-
power, discipline and control. Being obese, lack of personal hygiene or a
beauty regimen, refer, on the contrary, to people with unhealthy, weak-
minded and careless attitudes (see also Klein, 2001; Weber, 2006; Merta,
2008).
I indeed demonstrate that the increase in corpse depictions within
TV shows of the twenty-first century is driven by the standardisation
and civilisation of body appearances, which preclude the signs that
connect the dead body with age, illness or impurity. This precisely
signifies the connection between a loss of autonomy and death.
The autonomy of the body is connected to control of the body. For
Elias control over the body belongs to the achievements of rational
behaviour patterns in the process of civilisation. It seems not possible
to present an uncontrolled and will-less dead body because of the
increasing threshold of shame and repugnance. Dead bodies have to
be controlled even after death, because if they appear to be uncon-
trolled and therewith unclean and permeable they might disgust and
even reject the viewer. This brings us to another debate initiated earlier
in this chapter – that of the visibility of death – and the results yielded
here seem to confirm Belting’s argument that images of the dead
do not represent the dead, and that humans have always produced
medial masks of those things they refuse to see. The unwanted sight is
replaced by something wanted.
Notes
1. Of course every media image succumbs to, a certain extent, to aesthetics. In this
chapter the term aesthetic is used from a philosophical perspective following
Menninghaus’s (2007) elaborations on images of beauty and disgust.
2. This statement attaches the argumentation of Goodman who applied himself
to the definition of aestheticisation and the ‘paradox of ugliness’. According
to Goodman aesthetic experiences with certain art work can not only evoke
boredom but also negative emotions such as anxiety, hate and disgust.
These art works can give rise to purifying the viewer from held back nega-
tive emotions. Art therefore is not only balm but therapy (Goodman, 1995,
p. 227).
3. Cf. Menninghaus (2003).
4. ‘It is not so worrying that the dead man is made beautiful and given the
appearance of a representation. Every society has always done this. They have
always staved off the abjection of natural death, the social abjection of decom-
position which voids the corpse of its signs and its social force of significa-
tion, leaving it as nothing more than a substance, and by the same token,
precipitating the group into the terror of its own symbolic decomposition. It
is necessary to ward off death, to smother it in artificiality in order to evade
the unbearable moment when flesh becomes nothing but flesh, and ceases to
be a sign’ (Baudrillard, 1993, p. 180).
5. See also Bostnar et al. (2008); Hickethier (1993); Monaco (2000); Zettl (1973);
Bordwell and Thompson (2003).
6. It might be questionable whether the cast counts as part of media aesthetic
techniques in Zettl’s textbook (2008).
7. According to Featherstone, referring to Christopher Rivers (1994) and Richard
Twine (2002), ‘It is often assumed in consumer culture that people should
attend to their body image in an instrumental manner, as status and social
acceptability depend on how a person looks. This view is based on popular
physiognomic assumptions that the body, especially the face, is a reflection
of the self: that a person’s inner character or personality will shine through
the outer appearance. [ ... ] In its most extreme form it links beauty with moral
goodness’ (Featherstone, 2010, p. 195).
8. The Y cut for instance is hardly audible in the documentary. The very low
sound matches most closely a live wire sound. The Y cut in the fictitious crime
show sounds like somebody tearing a paper apart.
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Velbrück, pp. 71–94.
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Wadsworth Pub. Co.
5
Ladies’ Choice? Requested Death in
Film
Fran McInerney
Introduction
While dramatic representations of death abound in the media (McIlwain,

2005), more mundane, ‘natural’ deaths are not commonplace, reflecting
the media’s preoccupation with events of which people have little to no
experience (Chapman and Lupton, 1994), such as violent death (Durkin,
2003). A particular type of ‘unusual’ dying depicted in film has not
previously been studied. Despite being one of the most debated prac-
tices around contemporary dying, filmic representations of ‘requested
death’ (McInerney, 2000), that being the physician-assisted suicide (PAS),
euthanasia, or mercy killing1 of individuals, has not been explored.
This chapter considers constructions around requested death as artic-
ulated in popular film. Film is a noteworthy vehicle for depictions of
dying and death, with portrayals of requested death featuring from the
middle- to late-twentieth century and persisting into the twenty-first,
coinciding with requested death’s international socio-legal prominence
over that time. As an influential medium that simultaneously reflects and
constructs social meanings around mortality, the dominant messages
conveyed in film are worthy of exploration. Concretely, an analysis of
film portrayals of requested death may offer insights into contemporary
constructions of dying and death and the way they shape the social
identities of those involved in requested death practices.
In this chapter, a series of dominant representations of requested
death are identified via a discourse analysis of 20 English-speaking
films with a storyline involving requested death2: narrative positions
of hero and victim; sanitised constructions of death; and individual-
ised constructions of death. Additionally, there is a strongly gendered
construction underpinning these. Specifically, female passivity and male
92
Ladies’ Choice? Requested Death in Film 93
agency are powerfully present in the narrative structures of the films

analysed, reflecting surprisingly resilient traditional gender role stere-
otypes (effectively mired in mid-twentieth century constructions). The
gendered discourse identified reflects perhaps both cinematic impera-
tives and more active filmmaker constructions; it is beyond this chapter
to determine this. Cultural scripts via which meaning is constructed are
influenced by multiple circumstances. Tensions in such scripts, partic-
ularly in relation to the competing constructions of euthanasia as an
autonomous act and seekers of death being reliant on the aid of others,
reflect an uncertain ontology in respect of requested death and perhaps
mortality more generally.
Talking pictures
Gamson and Modigliani (1989) note that film is but one repository of
public discourse. Further, it is not necessarily the most important source
available for individuals in making sense of their worlds, compared
with, for example, ‘their own experience and that of significant others
in their lives ... ’ (Gamson, 1995, p. 85). Fairclough (1992, p. 123) argues
that the relationship between discourse and subjectivity is a dialectical
one; ‘subjects are in part positioned and constituted in discourse, but
they also engage in practice which contests and restructures the discur-
sive structures which position them’. Mass media are one of society’s key
repositories of meaning providing subjects with a variety of discursive
alternatives to identify with; hence functioning as specific machineries
that produce, reproduce and transform social phenomena and identities
(Carpentier and De Cleen, 2007, p. 274). Within this framework, media
audiences are then not defined as uniform and passive absorbers of
media messages (Chapman and Lupton, 1994); rather than see discourse
as an irresistible force beyond human agency, it is important to note
that selection takes place from within a variety of discursive possibilities,
both within and across sites of discourse, to construct ‘reality’ (Jacobs,
1996).
Notwithstanding the above however, ‘there are limits to the different
ways in which media texts can be “read”’ (Lupton, 1994, p. 52), owing
to the media’s being encoded with ‘preferred readings which the
majority of readers will decode and absorb’ (Karpf, 1988, p. 229). From
a Foucauldian perspective, film contains discursive constructions that
‘combine not only to structure what it is possible for us to think or
do, but also to limit our potential for thinking and acting differently’.
(Street, 1998, p. 68). As media discourse ‘privileges certain reading
94 Fran McInerney
positions’ (Hazelton, 1997a, p. 76), the options for engaging in debate

around public issues are limited (Tuchman, 1978). Lupton (1994,
p. 52) observes that media texts are derived ‘from a pool of common
discourses and meanings and are read within that framework’, as their
‘obviousness’ and ‘naturalness’ lead the reader ‘to step into the reading
position constructed in the text’ (Hazelton, 1997a, p. 76).
Art imitating life? The ebb and flow of

requested death in film
Media are an inseparable part of the social; they respond to existing soci-
etal issues and put these issues on their agendas. This applies not only
to news media, but also to other forms such as film. Plots for motion
pictures, thus, are not infrequently drawn from the prevailing issues of
the day; the 1970s disaster genre as a response to the Cold War illustrates
this (Keane, 2006), as does the more recent cinematic response to the
events around 9/11 in New York (Prince, 2009). It comes as no surprise,
then, that I was unable to locate films addressing requested death made
prior to 1960. The first film identified in my search, An Act of Murder
(1948), involves a mercy killing but is not overtly about requested death,
as the wishes of the individual who is killed are unknown. While it is
therefore not included in the analysis, as an early entrant in the broader
mercy killing genre this film is interesting in terms of timing – screening
when euthanasia and PAS were struggling to gain traction post World
War II (WWII). The 1930s had seen significant mobilisation of aware-
ness around requested death in both the United States and Britain, with
the first ‘Voluntary Euthanasia Society’ founded in London in 1935
(Voluntary Euthanasia Society of Scotland), followed by the ‘American
Euthanasia Society’ in New York in 1938 (ERGO!, 2012). These societies
were primarily concerned with legislation to allow for voluntary eutha-
nasia for the terminally ill, however bills to that effect were unsuccessful
during the late 1930s in both countries (Glick, 1992).
These fledgling euthanasia societies were to experience a significant
strategic blow with the onset of WWII and the Holocaust (Emanuel,
1994). Following this they encountered an unreceptive political envi-
ronment, which saw popular opinion turn strongly against euthanasia,
and right-to-die momentum consequently dissipate. Thus the sympa-
thetic tale of a judge and loving husband being accused (and acquitted)
of the mercy killing of his wife depicted in An Act of Murder (1948) was
unusual for film at that point. With the exception of The Greatest Show on
Earth in 1952, where a sub-plot concerns James Stewart as a roving circus
clown who proves to be a doctor in hiding following his mercy killing

of a patient (again not ‘officially’ part of this analysis as the desires of
the deceased are unknown), requested death was effectively absent from
motion pictures until the 1960s.
The times are a’changing

Kastenbaum (1979, p. 195) cites the early 1950s as the beginning of the
‘death awareness movement’, concerned with ‘proper and more human-
istic dying’ (Strauss, 1975, p. 196), and arising from ‘the belief that death
in American culture was denied’ (Seibold, 1992, p. 54). Kastenbaum
(1979) identifies Feifel’s The Meaning of Death (1959) as a key work in
uncovering and challenging the so-called ‘taboo’ surrounding death, and
Gorer (1955) had earlier voiced similar concerns in his influential article
‘The Pornography of Death’. Kastenbaum classifies Kübler-Ross’s text On
Death and Dying (1969) as the next ‘discovery’ of the death awareness
movement, crediting it with generating a new and ‘widespread concern
and compassion for the terminally ill’ (Kastenbaum, 1979, p. 195). Blumer
(1994[1951], p. 62) identifies a diverse body of literature common in
social movements, which is ‘of great importance in spreading a message
or view, however imprecise it may be, and ... in implanting suggestions,
awakening hopes, and arousing dissatisfactions’.
Certainly the early 1960s to late 1970s saw a rash of literature devoted
to death matters. The thanatological journals Omega and Death Education
appeared during this time, along with dozens of texts3. Such writings
address a variety of death-related issues, and support Kastenbaum’s
(1979, p. 195) observation that ‘by the early 1970s [and indeed beyond],
people were talking about death’ and developing new notions about
it in the process. Glick (1992) identifies a growth in right-to-die liter-
ature in professional journals from the late 1960s, with medical liter-
ature showing a surge from the mid-1960s. He links this to a similar
development in the American mass media at this time, as ‘journalists
summarise[d] and popularise[d this] research’ (1992, p. 63), and a rela-
tionship was forged between scholarly and more popular literature
forms. The motion picture industry in the USA as a part of this relation-
ship was on a time delay owing to costs and other factors associated
with motion picture production. Nonetheless it experienced a sustained
production of related films produced from the 1960s into the twenty-
first century (see Table 5.1).
The last few decades have seen little diminution in writing around
death, with the further important development of a genre concerned
with individual decision-making at life’s end. These texts run a gamut
Table 5.1 List of English-language films containing a requested death theme made between 1960 and 2010
Gender Cause of Gender

Country Role of of disability/ Role of death of Method of
Title Year of Origin requester requester terminality facilitator facilitator facilitation
The Bramble Bush 1960 US Unknown Male Unspecified terminal Doctor Male Drug
illness (UTI)
They Shoot Horses, 1969 US Dancer Female Depression Dance partner Male Gunshot
Don’t They?
Johnny Got His Gun 1971 US Soldier Male Catastrophic war Nurse Female Suffocation
wounds (unsuccessful) (unsuccessful)
Soylent Green 1973 US Scholar Male Despair/old age Clinic N/A Unclear (?drug)
Act of Love 1980 US Farmer Male Paralysis Brother Male Gunshot
When the Time Comes 1987 US Wife Female UTI Friend Male Poison
The Right to Die 1987 US Psychologist Female ALS Husband Male Drug
A Woman’s Tale 1991 Australia Spinster Female UTI/old age Nurse Female Drug
Last Wish 1992 US Mother Female Ovarian cancer Daughter/ Female/ Drug (assist)
son-in-law male
The Last Supper 1994 Canada Dancer Male AIDS Doctor Male Drug
The English Patient 1996 US Pilot Male Burns/paralysis Nurse Female Drug
It’s My Party 1996 US Architect Male AIDS Friends Mixed Drugs
One True Thing 1998 US Mother Female Cancer Unclear N/A Drugs
Igby Goes Down 2002 US Mother Female Cancer Sons Male Drugs/
Suffocation
Walking on Water 2002 Australia Friend Male AIDS Friend Male Drugs/
Suffocation
The Event 2003 US Labourer Male AIDS Friends Mixed Drugs
Million Dollar Baby 2004 US Boxer Female Paralysis Coach Male Drug
The Altruist 2004 US Multiple Mixed Depression/UTI Hitmen Male Multiple
Two Weeks 2007 US Mother Female Cancer Children Mixed Drug
Before the Devil Knows 2007 US Finance Male Gunshot wound Father Male Suffocation
You’re Dead executive
from the disciplines of philosophy, bioethics, law, medicine, and soci-

ology, to more ‘popular’ texts written for – and not infrequently by – the
‘lay’ person, reflecting a democratisation of issues around mortality4.
These more recent texts reinforce the contention that death is by no
means a hidden or taboo topic in contemporary times – on the contrary,
from a publisher’s perspective at least it would appear to ‘sell’. Such
publications have encouraged what Tierney (1997, p. 52) describes as
the growth in ‘reflection upon death among late-moderns’ and are both
indicative and shaping of it, particularly those dealing with concepts of
‘choice’, ‘rights’, and ‘freedoms’ at life’s end.
Requested death – on the radar

In terms of the rise in interest in death since the end of last century
and how this might have influenced (and been influenced by) filmic
portrayals around requested death, three events warrant noting. The first
is the rise of social movements in the 1960s, whose proponents, it has
been argued, drew their understandings of being ‘victims of discrimina-
tion’ from the American civil rights movement’s framings of reality and
made associated demands for expanded legal rights (McAdam, 1994,
p. 41). Turner (1984, p. 87) has argued that the injustice defined by the
era that gave rise to new social movements – the 1960s – was ‘the lack of
a sense of personal dignity or a clear sense of identity’. This ideological
underpinning links movements as seemingly diverse as the women’s, gay
rights, abortion, peace, environmental and requested death movements,
as they struggle over ‘“cultural rights” ... the right to one’s own lifestyle,
the right to be different, the protection of the individual against entirely
new kinds of risks’ (Kriesi, 1988, p. 358), including the risk of dying in
an undesired and/or uncontrolled – constructed as ‘undignified’ in the
English-speaking West at least – manner (McInerney, 2000).
The second event, in terms of its impact on both the imagery around
and growing legal prominence of the right-to-die issue, involved a
young woman, Karen Ann Quinlan. The 22-year-old’s parents success-
fully petitioned the New Jersey Supreme Court in In re Quinlan in 1976 to
disconnect their daughter’s respirator following her entering a persistent
vegetative state. While the actions of the Quinlans and the court were
not about requested death per se, and while Karen did not die for nine
years after her ‘life support’ was removed, her circumstances have been
held up as a ‘watershed’ in the right-to-die campaign (Humphry, 1991,
p. 165). Requested death Bills had been introduced in the UK and
USA in the late 1960s for the first time since the end of WWII (Glick,
1992; Emanuel, 1994), but it was the Quinlan’s civil suit and attendant
98 Fran McInerney
publicity that has been argued to mark the beginning of the concerted
legal contestation around the ‘right-to-die’ in the West that persists to
the present day (Glick, 1992; Berger 1990), with the embodied Quinlan
making a powerful impact on the collective concern of how death might
come under an advanced medical model.
Finally, the rise to prominence of Dr Jack Kevorkian in the right-
to-die arena warrants commentary. His public requested death activi-
ties commenced in the USA in 1990 when he assisted his first client to
die. He had a flair for the dramatic in staging his activities, frequently
enacting them in an aged Volkswagen van, and depositing the deceased
bodies outside major hospitals. After almost a decade of evading pros-
ecution for the assisted suicides of 130 individuals owing to PAS not
being illegal in the State of Michigan (Smith, 1993), he was convicted of
second degree murder following his euthanising a patient and making a
videotape of this event available for screening on the American television
network CBS’s 60 Minutes. The 1990s was a particularly active decade for
the production of films addressing requested death, comprising almost
30 per cent of the films considered here that were produced over the six-
decade span of this chapter. Kevorkian’s activities may have been coinci-
dental to this; other developments such as the public emergence of the
HIV–AIDS euthanasia lobby in this decade (Dowbiggin, 2013) are likely
to have also influenced the increase in requested death-related films,
particularly those addressing men dying of AIDS, but it is reasonable
to speculate that Kevorkian’s ongoing actions contributed to keeping
the issue in the public arena and marketable for plot purposes (Kenny,
2000). While outside the confines of this work, in illustration of the
media interest his activities evoked, a biopic of Kevorkian’s life You Don’t
Know Jack was produced by HBO in 2010, earning dozens of industry
award nominations and Emmy and Golden Globe awards for Al Pacino
in the title role (IMDB, 2012).
The timing of films depicting euthanasia and PAS can be seen to
coincide with broader socio-legal developments in the area. Requested
death’s ebb and flow in the public arena contributes to filmic repre-
sentation, as scriptwriters and producers search for plots that will
capture and resonate with the public imagination. These topical areas
are then subjected to dramatic treatment as the cinematic narrative
develops.
The analysis that follows explores cinematic narratives around
requested death and aims to identify dominant sets of representa-
tions of the practice of requested death and the identities of those
involved.
Methodological approach
Films with the key word ‘euthanasia’ or ‘mercy killing’ were searched
for under the search headings ‘title’, ‘plot’ or ‘keyword’ on the Internet
Movie Data Base (IMDB) site, which contains information on more
than 1.5 million titles of English and non-English films and television
series. A Google search was also undertaken for ‘euthanasia in film’,
which identified a list compiled by the requested death movement site
Euthanasia Research and Guidance Organizaton (ERGO!, 2010) entitled
‘films dealing with dying and euthanasia’. The ERGO! list was cross-ref-
erenced against the IMDB site and 80 films made between 1948 and 2010
were identified. From this list, owing to my monolingual status, non-
English films were eliminated. Additionally, ‘documentary’ films, films
exploring euthanasia in the context of the Holocaust, those addressing
removal or refusal of treatment, dealing with ‘mercy killing’ where the
wishes of the deceased were unclear, and addressing the euthanasia of
animals were omitted. Following this, 20 films made between 1960 and
2010 (see Table 5.1) formed the data for this chapter. As with my work
exploring dying in film (McInerney, 2009), I do not claim this to be
an exhaustive list but rather a significant and broadly representative
selection.
The 20 selected films were analysed via discourse analysis, following the
premise that, rather than a ‘transparent medium’ which transmits ‘facts’
(Potter and Wetherell, 1987, p. 184), language or text is far from neutral.
Discourse analysis as a method is concerned with considering both the
textual and contextual dimensions of discourse (Hazelton, 1997a). The
former dimension involves the ‘micro elements’ of discourse, including
the use of such structures as ‘grammar, rhetorical devices, syntax,
sound forms and the overt meaning and content matter of words and
sentences of a text or talk ... [as well as] ... topics and themes’ (Lupton,
1992, p. 145). The contextual dimension of discourse analysis concerns
‘the function of the discourse’ (Hazelton, 1997b, p. 145); examining
how ‘discourses structure, influence and are influenced by the social
situation’ (van Dijk, 1988, p. 30). Potter and Wetherell (1987, p. 168)
recommend that analysis takes ‘two closely related phases’. Firstly, at
the ‘micro’ or ‘textual’ level, patterns within the texts are identified,
including different and shared features of both form and content. The
second, ‘contextual’ phase entails exploring the ‘functions and conse-
quences’ of the identified discourses.
Potter and Wetherell (1987, p. 168) observe in relation to the discourse
analysis method that ‘it is not a case of stating, first you do this and then
100 Fran McInerney
you do that’. However, having identified the ‘details of linguistic struc-

ture’ within the selected media representations, the next phase of analysis
isolates the texts’ ‘social and historical situation’ (Fowler, 1991, p. 67),
or in Kellehear’s (1993, p. 48) words, ‘trace[s] their source beyond their
setting’. In recognition that the media privileges certain meanings over
others, the aim of this activity is to uncover the links between discourse
structures and social situations (Lupton, 1992). This entails an explora-
tion of the ideological context in which the identified discourses and
meanings around requested death ‘make sense’ (Lupton, 1994), directing
public debate in ways ‘that privilege certain social interests over others’.
(Hazelton, 1997b, p. 152) Kress and van Leeuwen (2001, p. 48) observe
that film is inherently multi-model as it displays ‘different and constantly
varying constellations of sound, image, gesture, text and language’.
Consistent with this understanding, Prince (1993, p. 25) notes that
‘linguistic models ... are not requisite for explaining how we respond to
and make sense out of pictorial information’. I viewed the identified
films in full on two occasions and explored them to identify dominant
constructions around requested death. The first viewing allowed me to
gain a sense of the various narratives and familiarise myself with plots
and protagonists. Notes were taken, including social data about the
death requester, key relationships depicted, the factor/s contributing
to the death request, and the methods used to bring about the sought
deaths. Points of commonality and difference emerged as the films were
viewed, and these were also noted. The second viewings allowed for
refinement of the analysis, and included more detailed identification of
plot devices, and transcription of key passages of script, visual images
depicting interactions of the death requester and the person providing
assistance, texts and practices indicative of particular discourses, and
identification of related social developments.
The following three sections discuss the dominant sets of representa-
tions that have been identified. The first area to be addressed is that of the
gendered discourse underpinning the narrative positions of requested
death heroes and victims, to be followed by sanitised and individualised
constructions of requested death.
Sex and death
In the films identified, those seeking euthanasia or PAS are split evenly
by gender. However, as with dying in film generally (McInerney, 2009),
the genders are dealt with distinctly in relation to requested death, along
very traditional lines.
For male characters, the events that prompt their euthanasia or PAS
fall into two categories: paralysis (Act of Love 1980; Whose Life is it
Anyway? 1981) or other catastrophic injury (Johnny Got His Gun 1971;
The English Patient 1996) resulting from accident for (apparently) hetero-
sexual males; and AIDS-related illness (The Last Supper 1994; It’s My Party
1996; Walking on Water 2002; The Event 2003) for (apparently) homo-
sexual males. While those suffering paralysis are not terminally ill, their
condition is irreversible, their world constructed as irrevocably reduced,
and induced death depicted as the only option to relieve their suffering.
Males experiencing AIDS are terminally ill (notwithstanding that owing
to new therapeutic regimens AIDS in the developed world has increas-
ingly been recast as a ‘chronic’ condition (Hoy-Ellis and Fredriksen-
Goldsen, 2007)) and thus more readily fulfil the criteria for requested
death. Male death requesters are portrayed as active engagers in life,
cut down in their prime through energetic activities (be that sexual or
extreme sport-related). In concert with this, their life-limiting condition
has its origins in the external world. Further illustrative of their active
social status, male requesters’ backgrounds include a variety of identified
occupations, including pilot, soldier, labourer and architect. In contrast
(and consistent with women dying in film more generally (McInerney,
2009)), women seeking death in film are primarily cast as wives and
mothers; their physical space is domestic, and their relative passivity
is reflected in the nature of the life-limiting condition that precipitates
their request for death.
For women, the principal issue motivating their death request is
terminal illness, predominantly cancer (One True Thing 1998; Igby Goes
Down 2002; Two Weeks 2007) or otherwise unspecified terminal illness
(When the Time Comes 1987; Last Wish 1992), along with extreme old
age (A Woman’s Tale 1991), amyotrophic lateral sclerosis (The Right to
Die 1987), and depression (They Shoot Horses Don’t They? 1969). Unlike
their male counterparts, women’s terminal state almost always arises
internally, reflecting the more restricted nature of their social agency. A
notable exception to this portrayal is Million Dollar Baby (2004), where
the recipient of euthanasia is a female boxer who sustains a head injury
and consequent paralysis. This film was widely praised for its dramatic
depth, pushing of boundaries and ‘rarefied’ quality (McCarthy, 2004);
winning four major Academy awards, including Best Picture. However
the film’s novelty lies almost exclusively in the gender-role switch, where
the protagonist assumes a highly unorthodox and classically male role;
the film itself is otherwise indistinguishable from the stereotypical cine-
matic narrative of the active male death requester.
102 Fran McInerney
While recipients of euthanasia and PAS in the films identified are split
on gender lines, deliverers of requested death are overwhelmingly male,
again reflecting their constructed agency, and arguably more readily
fulfilling the traditional ‘heroic’ persona. The males responding to the
requests for death occupy various social roles, including husband (The
Right to Die 1987), sons (Igby Goes Down 2002), friends (When the Time
Comes 1987; Walking on Water 2002) and doctors (The Bramble Bush 1960;
The Last Supper 1974). The three films depicting solo women enablers of
death requesters all involve female nurses, seen in Johnny Got His Gun
(1971) – although efforts are thwarted here – A Woman’s Tale (1991)
and The English Patient (1996). The following section explores this hero–
victim dynamic more closely.
To the rescue
As noted in earlier work exploring depictions of requested death in

Australian print media (McInerney, 2006) and of dying in film more
generally (McInerney, 2009), narratives involving victims, villains
and heroes are frequently encountered. Unlike the more obviously
political milieu of the news media, there is relatively little in the way
of overt villainy encountered in the films explored here, but rather a
greater concentration on the victim–hero dyad in the cinematic plot.
Film must package a complete narrative within 100 minutes or therea-
bouts, leaving little time for consideration of the broader socio-political
context (such as the impact of law, church and state) in which the story
unfolds. Rather, borrowing heavily from the more simplistic ‘disease of
the week’ television movie genre, ‘with its virtuous heroines and tear-
jerking moments’ (Newman, 2006, p. 96), villainy is located primarily in
the disease or disability afflicting the person requesting death. As seen
in other media forms (McInerney, 2006), and consistent with a culture
intolerant of the corporeal deviations associated with advanced illness
and disability (McInerney, 2007), various conditions are depicted as
diminishing affected persons before ultimately killing them.
Those accommodating death requesters are depicted from within
a rescuer discourse; the hero saving the helpless dying person. While
several dying protagonists are depicted as ‘fighting’ for their right to
die (When the Time Comes 1987; A Woman’s Tale 1991; Last Wish 1992;
The Last Supper 1994; Igby Goes Down 2002; Million Dollar Baby 2004),
these individuals are more fundamentally couched as victims requiring
assistance, even when physically capable of an independent suicide.
The exception here is the mother taking her own life helped by her
daughter and son-in-law in Last Wish (1992), a ‘bio-drama’ based on the

experience of euthanasia activist Betty Rollins. Yet others seek the aid of
friends as they take their own lives or are assisted to do so (It’s My Party
1996; Walking on Water 2002; The Event 2003); these three films involve
AIDS-focused storylines and arguably invoke the alienation from family
and subsequent reliance on friends and community for care and support
identified within gay culture (Johnston, Stall and Smith, 1995). The rela-
tional component of requested death is heavily on display in the films
considered here; requested death by its nature enforces a relationship of
at least two people, and the dramatic imperatives of film make focusing
on this dynamic particularly apt.
A third cohort (see Table 5.2) is yet more passive, their deaths taking
place off-screen (Murder or Mercy 1974; Mercy or Murder 1987) and the
details of their seeking death unclear. Their ‘request’ for death thus
being equivocal they are largely peripheral here, but it is worth noting
that the recipients of mercy killing in these two films are women and
those providing assistance men, further reflecting the female passivity
dominating this genre. The two other films in this grouping (One Flew
Over the Cuckoo’s Nest 1975; The Safety of Objects 2001) that are not
depictions of ‘requested death’ but instances of what might be called
non-voluntary euthanasia or mercy killing, both involve men in coma-
tose states whose deaths (both by suffocation, with one committed by
the protagonist’s mother) are graphically represented on the screen,
in some respects reinforcing the agency of the male death recipient in
such filmic portrayals. The graphic representations of requested death
activities explored below – idyllic or grotesque – can be seen to operate
from within a sanitised or aesthetic discourse. The relationships shown
between the autonomous death requester and death enabler – whether
lay or professional – highlight some of the ontological tensions around
dying that requested death as constructed in the analysed films is unable
to resolve.
Happily ever after?
Requested death is positively portrayed in the films accessed; the auton-

omous desire of the requester is not questioned and the hero-perpetrator
is depicted sympathetically. The deaths are rarely seen on screen; as in
romantic film more generally (McInerney, 2009) the ultimate event
most commonly happens off stage. In some depictions the manner of
death is unclear; the deaths of the mothers in One True Thing (1998) and
Two Weeks (2007) are equivocally wrought for greater dramatic tension
104 Fran McInerney
Table 5.2 List of English-language films containing a mercy killing theme made
between 1974 and 2001
Gender
Country Gender Cause of Role of of
of Role of of disability/ mercy mercy Method
Title Year Origin recipient recipient terminality killer killer of killing
Murder or
Mercy 1974 US Wife Female UTI Doctor Male Drug
One Flew
Over the
Cuckoo’s Post-
Nest 1975 US Criminal Male lobotomy Friend Male Suffocation
Mercy or Alzheimer’s
Murder 1987 US Wife Female Disease Husband Male Gunshot
The Safety Paralysis/
of Objects 2001 US Son Male Coma Mother Female Suffocation
(McInerney, 2009). In The English Patient (1996) the title character’s face
is freeze-framed as his nurse draws up the fatal dose (and in an added
melodramatic touch, futilely expels air from the syringe; there being
no ‘risk’ at this point from any injected air) following his whispered
request – invoking a maternal discourse and softening the ‘expert profes-
sional’ component of the interaction – for her to ‘read me to sleep’. A
similarly sanitised display is depicted in the other nurse-administered
death of this genre (A Woman’s Tale 1991).
Perhaps the most idyllic scene of euthanasia is ironically administered
by the State apparatus in Soylent Green (1973), replete with swelling
orchestral music and a giant screen projecting images of bucolic beauty,
as the dying recipient lies suspended on a bizarre contraption that
resembles nothing so much as a cross between a hospital bed and an
altar. Professionally assisted death is depicted as achieving the control
and predictability so valued in modernity generally and requested death
discourse in particular (McInerney, 2007); here there is the added dimen-
sion of casting the professional (or State for that matter) in a deeply
compassionate light. This also fulfils the imperative for the dying person
to be ‘companioned’ in their dying, as dying alone remains deeply unde-
sirable in Western culture (Seale, 2004).
In contrast to the more idyllic depictions above, grotesque euthanasia
imagery opens Igby Goes Down (2002), where a son feeds his mother
Seconal-laced strawberry yoghurt to bring about her death. The moth-
er’s prescription drug history means that the dose does not prove fatal,
and the action focuses for some time on her semi-conscious face and
stertorous breathing. Her son resorts to placing a plastic bag over her
head, secured around her neck with a scarf. We witness her sucking in
the plastic against her lipsticked mouth. She sits forward with her eyes
widely staring for a moment, and then abruptly dies with mouth agape.
This is an unusually vivid depiction; the recipient we learn is a control-
ling and insensitive parent, and there is a hint that her ‘sticky end’
constitutes justice for her poor mothering. The same year sees another
macabre depiction of a ‘messy’ euthanasia in Walking on Water (2002),
an Australian drama where the friend of a man dying from AIDS uses a
plastic bag when the physician-administered morphine fails to have the
desired fatal effect. This dramatic death, again opening the film, serves
as a catalyst and in some respects a metaphor for the disintegration of
friends and family that the remainder of the narrative explores (a plot
device also seen in The Bramble Bush 1960). ‘Messy death’ in the context
of requested death is most often depicted as lay individuals ‘botching’
their suicides (McInerney, 2007), and used as an argument to profes-
sionally regulate death-inducing practices; these two graphic depictions
support this construction, as while the deaths are achieved they are
portrayed as variously disruptive to the protagonists.
Discussion
Requested death in film has emerged alongside its increasing presence

as a social issue in the developed world since the 1960s, and following
a period of abeyance following WWII. The representations in the films
addressed here involve a number of constructions of death and dying.
As an influential medium that simultaneously reflects and constructs
social meanings around mortality, the dominant messages conveyed
around requested death in film are worthy of note.
Contemporary discourses around requested death are preoccupied
with control; individual autonomy is promulgated as the ultimate
principle in this respect in late modernity (de Roubaix, 2008). At its
most general, modernity can be viewed as the ‘modes of social life or
organisation which emerged in Europe from about the seventeenth
century ... and which subsequently became more or less worldwide in
their influence’ (Giddens, 1990, p. 1). Modernity has been character-
ised by emphases on science, rationality, secularism, individuality, and
control of the ‘natural’ world, in the pursuit of progress (Bauman, 1998).
Prior (1997, p. 177) observes that ‘nineteenth- and twentieth-century
images of death are very much tied up with the notions of a controllable
and calculable universe – a universe which can be supposedly mastered
106 Fran McInerney
through human praxis’. Indeed, modernity has arguably transformed

the contemporary experience of dying and death, albeit in complex
ways. While as Elias (1985, p. 76) notes, ‘knowledge of the causes of
illnesses, of ageing and dying, has become more secure and compre-
hensive’, with longevity increasing to unprecedented levels (Kellehear,
2000), associated morbidity is a problematic paradox of contempo-
rary existence (Turner, 1987). Mortality itself has not to date been
overcome by modern progress; rather it represents, as Giddens (1991,
p. 162) observes, ‘nothing more or less than the moment at which human
control over human existence finds an outer limit’. As a consequence
of this, death’s resistance to attempts to tame it has been described as
‘a slap in the face’ of modern ambition (Bauman, 1993, p. 28). Death,
as a fundamental threat to the modern project, has been the focus of
vigorous and ongoing efforts at control, of which requested death is
perhaps the ultimate contemporary expression.
Those engaged in the storylines around requested death in the films
explored in this chapter are portrayed within a dramatic narrative,
populated by brave but helpless sufferers who are rescued by the heroic
death-inducing acts of others. Those heroes are predominantly male char-
acters, reinforcing the strength of those enabling death for sufferers. The
other major group of rescuers belong to the health professions; within
a professionalised and therapeutic discourse, doctors and nurses exer-
cise strength and compassion in relation to granting requests for death.
Gender also emerges as a factor in the depiction of those seeking death;
women seekers overwhelmingly experience terminal illness, while men
present with either paralysis or other catastrophic injury resulting from
physical activity, or AIDS-related illness in the case of gay men. In many
respects in filmic portrayals of requested death dying itself is feminised,
with death being administered as a revivalist act, in the sense of Seale’s
(2002, p. 125) notion of the ‘conquest of the limitations of the body’.
Traditional stereotypical gender roles are a dominant lens through
which both mortality and life before illness is constructed. Male death
requesters are far more likely than their female counterparts to have
an active life history to which viewers are given access, and their paths
to terminal illness reflect their relative agency; however ultimately
both genders are portrayed as victims unable to control their dying
and dependent on the interventions of others. The discursive tensions
within the constructions of the autonomous individual seeking death
and his (or her) reliance on outside assistance in achieving this aim are
not resolved in filmic depictions; indeed such tensions are arguably
magnified as relational elements are highlighted within the dramatic
frame. While professional assistance is generally portrayed as contrib-

uting to a controlled, easeful, and compassionate death, deaths medi-
ated by lay individuals are frequently constructed as less predictable.
Death continues to resist efforts at control in this genre; requested death
may be desirable but remains uncertain in many respects, as its manner
and timing – let alone its meaning – remain elusive.
Some commentators have noted the potential for gender to assume
importance in the context of euthanasia and its regulation, noting the
disproportionate number of women who accessed requested death from
Jack Kevorkian (Roscoe et al., 2001; Solomon and Noll, 2008), and from
within feminist discourse postulating reasons for this that have their
origins in understandings of the socially oppressed status of women
(Canetto and Hollenshead, 2000–2001; Wolf, 1996). This oppression
may work in a number of ways however; Callahan (1996, p. 29) posits
that requested death might operate against feminist ideals of ‘inclu-
sive justice, caretaking and the interconnectedness of all things’, while
Parks (2000) suggests that women’s requests for death may be given
less credence than those of their male counterparts owing to their
concerns and decisional capacity generally being taken less seriously.
At a minimum, by virtue of their demographics women are more likely
to face terminal illness in greater poverty, isolation, and older age than
men (Canetto and Hollenshead, 2000–2001; Seale, 2000), thus requested
death constructions and activities warrant further, gendered analysis.
Selection of discourses via which meaning is constructed is contin-
gent and contextual, influenced by ‘ideational, material, and structural
circumstances’ (Turner, 1984, p. 175). Fowler (1991, p. 66) cautions
that such selection may also not infrequently be reduced by ‘habit and
inertia’, whereby individuals conform to the perceived ‘correct mode’ of
discourse for given situations. Certainly in the case of requested death
in film, while ostensibly depicting a highly contemporary and contro-
versial phenomenon, filmmakers resort to dated and traditional gender
depictions of protagonists, or cultural scripts (Seale, 1998) that argu-
ably fail to capture the complexities of contemporary social roles and
relationships. An exploration of the discourses used to depict dying and
death, be it wild or tamed, and in particular requested death’s depic-
tion in film, offers insights into the social identities of those engaging
in such discursive practices, be they victim or hero, professional or lay,
requester or enabler, woman or man. Exploring dominant discourses
finding expression within cinematic portrayals sheds light on contem-
porary social constructions of the dying person and death itself, along
with available options for such constructions.
108 Fran McInerney
Notes
1. For the purposes of this piece and in keeping with most international legal
definitions, physician-assisted suicide refers to where ‘physicians give patients
the means to kill themselves with the intention that patients would so use
them’ (Somerville, 2001, p. 106). Euthanasia refers to where a ‘doctor delib-
erately acts to cause death; by injecting a lethal dose of drugs, for example,
at the patient’s request’ (Cosic, 2003, p. 20). Mercy killing refers to ‘inten-
tional killing, often by family members or friends, with the stated intent to
end perceived suffering’ (Canetto and Hollenshead, 2000–2001, p. 83). Here,
these activities occur in the context of the person’s consent (thus fulfilling the
‘requested’ death criteria).
2. Approximately 20 English-speaking films with a dominant storyline
involving requested death were identified and explored via discourse
analysis. The USA has been at the forefront of contemporary social and
legislative developments around requested death in the English speaking
world, and this emphasis is reflected in much of what follows. Additionally,
the majority of the films identified for analysis emerge from this country,
consistent with North America’s predominance in the Western motion
picture industry.
3. See, for example Mitford’s The American way of death (1963); Glaser and Strauss’
Awareness of dying (1965); de Beauvoir’s A very easy death (1966); Sudnow’s
Passing on (1967); Glaser and Strauss’ Time for dying (1968); Kutsher’s Death
and bereavement (1969); Vernon’s Sociology of death: An analysis of death-related
behaviour (1970); Kastenbaum and Aisenberg’s The psychology of death (1972);
Becker’s The denial of death (1973); Aries’ Western attitudes toward death
(1974); Kübler-Ross’s, Death: The final stage of growth (1975); Veatch’s Death,
dying and the biological revolution (1976); Feifel’s New meanings of death and
Glover’s Causing death and saving lives (1977); Stoddard’s The hospice move-
ment (1978).
4. Some instructive titles include Zorza and Zorza’s A way to die: Living to the
end (1980); Aries The hour of our death (1981); DeSpelder and Strickland’s
The last dance: Encountering death and dying (1983); Macguire’s Death by
choice (1984); Crouch and Huppauf’s Essays on mortality (1985); Rachel’s The
end of life (1986); Kamerman’s Death in the midst of life (1988); Humphry’s
Final exit: The practicalities of self-deliverance and assisted suicide for the
dying (1991); Nuland’s How we die and Dworkin’s Life’s Dominion (1993);
Singer’s Rethinking life and death (1994); Chapman and Leeder’s The last
right? and Kauffman’s Awareness of mortality (1995); Morgan’s An easeful
death? (1996); Hendin’s Seduced by death: Doctors, patients, and the Dutch
cure (1997); Lawton’s The dying process (2000); Lynn, Schuster and Harrold’s
Handbook for mortals (2001); Coberly’s Sacred passage (2002); Roach’s Stiff
(2003); Kaufman’s And a time to die: How American hospitals shape the end of
life, (2005); Colby’s Unplugged: Reclaiming our right to die in America (2006);
Warnock and Macdonald’s Easeful Death: Is there a case for assisted dying?
(2008); Côté’s In search of gentle death: The fight for your right to die with
dignity (2012).
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6
The Expertise of Illness: Celebrity
Constructions and Public
Understandings
Daniel Ashton
Introduction
This chapter explores public responses to mediated constructions of

illness and death, and uses celebrity Jade Goody’s highly documented
diagnosis and death from cervical cancer during 2009 to examine
tensions around ordinary and authentic experiences of illness and
dying. Jade Goody found fame in 2002 in the Big Brother house (see
Mathijs and Jones, 2004 for a discussion of Big Brother); since leaving, she
established a celebrity profile through reality shows, a celebrity column
and biographies. On 19 August 2008, whilst inside the Bigg Boss (2008)
house Goody was informed of her diagnosis of cervical cancer. This was
a highly visible disclosure and has been the focus of significant coverage
by academics (Walter, 2008, 2009, 2010; Woodthorpe, 2010; Kavka and
West, 2010), health professionals (see Cassidy, 2009), and the popular
press. Much popular press coverage focused on the so-called ‘Jade Effect’
of encouraging women to undertake cervical cancer screenings (BBC,
2009; Boseley, 2009; Elliott, 2009; Sinclair, 2009; Sturcke, 2009). Goody’s
high-profile ‘battle’ (see Sontag, 1978) with cervical cancer was held to
have helped dramatically reverse the downward trend in women going
for screening (Sinclair, 2009).
This chapter employs focus groups to examine the social construction
of the ‘Jade Effect’ and how audiences encounter and construct Goody’s
illness and dying. Exploring the multiplicity of responses and negotia-
tions around the ‘Jade Effect’ enables broad-brush claims on the influence
and resonance of celebrity narratives to be evaluated and the universal or
apparent truth and value of this ‘effect’ to be critically examined.
For Turner (2010, p. 14) celebrity is a cultural formation that also has
a social function and ‘participates in the field of expectations that many,
114
The Expertise of Illness 115
particularly the young, have of everyday life’. In this instance, Goody

participated in the field of expectations around illness and dying and the
associated public understandings and negotiations of these expectations
are the focus for this discussion. Turner (2010, p. 17) goes on to consider
how, ‘in the critical tradition of cultural and media studies, particularly
in its Anglo-American formations’ there has been a refusal, no doubt
in response to inconclusive effects studies, ‘to make direct connections
between media products and their cultural or social effects’. A social
constructionist approach that focuses on the meanings that members
of the public negotiate in relation to Goody allows for the complexities
of her contested celebrity status to be addressed. In appreciating the
interplay of influence and interpretation in audience reception (Eldridge
et al., 1997), a social constructionist perspective cautions against
drawing a one-dimensional causal relationship between media coverage
and corresponding responses from the public. Instead, the emphasis is
on analysis that is attentive to the heterogeneous, complex and multiple
interpretations that members of the public make in different contexts
and interactions as they construct and negotiate meaning.
As this chapter explores, one of the most compelling themes to emerge
from research into public engagements with Goody during this time
concerns the (in)authenticity of her dying as it is intricately bound up
with the (in)authenticity that comes with her celebrity status. Goody
was a celebrity, but ordinary in terms of ‘achievements’ and ‘talent’
(Rojek, 2001). Her ordinariness was the basis for securing invested
audiences and she only ever played herself (Ashton and Feasey, 2013).
Carpentier and Hannot’s (2009) discussion of the identities of ‘ordi-
nary people’ is instructive for understanding Goody’s status as ordi-
nary and celebrity. They offer perspectives from Syvertsen (2001) on
ordinary people as ‘people who are not media professionals, experts,
celebrities or newsworthy for any other reason’ and Ytreberg (2004) on
ordinary people as ‘non-professional and non-specialised performers’.
(Carpentier and Hannot, 2009, p. 602) Whilst Goody as ‘a celebrity’
would seem to fall outside these distinctions, it is crucial to highlight
how the basis and operation of her celebrity status was the ordinary.
This is not to draw a distinction between a ‘real’, unmediated Goody
and a ‘unreal’, mediated Goody but rather to address Goody as a celeb-
rity construction defined by claims to ordinariness – the mediated
persona exists as the ordinary. It was the everyday and ordinary that
defined coverage of Goody in Big Brother, in the Living with ... Jade docu-
mentary series (Kavka and West, 2010), and in her relationship with
OK! magazine (Ashton and Feasey, 2013).
116 Daniel Ashton
In turn, as Carpentier and Hannot (2009, p. 608) note, ‘celebrities, in

contrast to ordinary people, are part of a specific cultural–industrial system,
which is seen to structurally limit their capacity to participate openly and
to act spontaneously (and to be authentic)’. Specifically at stake in the
negotiation and contestation of Goody’s ordinary/celebrity status is the
perceived authenticity of her experiences of illness and dying:
Ordinary people need to have authentic everyday life experiences,

but when these experiences are considered (too) extraordinary, abun-
dantly detailed or even vulgar, their narrations also become disarticu-
lated from [ ... ] ordinary people and they are marginalised. (Carpentier
and Hannot, 2009, p. 606)
Engagements with Goody’s ordinary/celebrity identity offer instructive

insights into the diverse public understandings of celebrity experiences
of illness and dying. Exploring the questionable (in)authenticity and
normality of these experiences provides a more nuanced understanding
which moves from attempts to measure ‘effect’ to the social construc-
tion of illness and dying. As this chapter argues, the very legitimacy
of Goody’s experiences of illness and dying, both for herself and more
widely, becomes a point of uncertainty and instability as authenticity is
eroded in the (dis)articulation of her identities.
In examining the authenticity of diverse experiences of illness and
dying, this chapter firstly examines celebrity as a domain of meaning-
making in which forms of expertise on issues of health communication
are made publicly visible. Goody emphasised personal narratives and
human-interest perspectives in ways that would make both her and her
illness and dying accessible. In doing so, she enacted a form of highly
visible lay expertise.
Secondly, and in response to health communications approaches to
the communication of messages, reception research is introduced as a
means to examine complexities and tensions in public engagement with
celebrity figures. Thirdly, perspectives from focus group participants
are examined with analysis focusing on how Goody’s entitlement to
speak as a lay expert was questioned. The contested nature of Goody’s
ordinary experience of illness and dying is revealed by the divergent
and distant positions expressed by participants in relation to their own
personal understandings and constructions of ‘ordinary’ dying. In short,
the engagements that participants describe in relation to Goody reveal
scepticism towards the authenticity of her highly visible media coverage
and associated public performances.
Expertise, ordinariness and authenticity
A number of health communication researchers have stressed how

celebrities who make their diagnosis, illness, and treatment public can
trigger a wealth of media coverage and raise public awareness about
their condition (see Brown and Basil, 1995). Such health communica-
tions approaches are often concerned with raising awareness, inspiring
action and inculcating changes in behaviour (Rice and Atkin, 2009).
The goal-orientated underpinnings of health communications practice
are clearly evident in the following comments from Brown and Fraser
(2003, p. 111): ‘E-E [Entertainment-Education] planners should focus on
searching for positive celebrity role models to support their E-E goals.’
This approach seeks to mobilise celebrities in the communication of
health messages to specific target groups with which they are regarded
as having particular relevance.
In contrast to a transportation model in which mediated celebrity acts
as a vehicle for the communication of information, this chapter follows
a social construction model which engages with the complex and
symbolic organisation of communication (Hughes et al., 2006). Within
this approach, assumptions on how knowledge is communicated and
then acted upon are avoided to allow for competing perspectives on
the active construction of knowledge to be examined. In this respect
the role of a celebrity becomes more complicated and contested than
communicating a piece of health information. For example, Couldry
and Markham’s (2007, p. 411) analysis of celebrities as catalysts for polit-
ical participation cautions against broad-brush assumptions that celeb-
rity involvement promotes engagement and understanding:
[ ... ] instead of relying on presumptions about the resonance of celeb-

rity narratives for whole populations, it is essential to develop more
specific arguments based on detailed evidence. No general claims
are possible about celebrity culture’s possible relevance to people’s
connections.
The focus on ‘celebrities as role models’ by health communication

researchers seems to overlook the diverse and multiple ways in celebrity
illness can be encountered, understood and negotiated. As perspectives
from cultural studies of celebrity address, there are significant differ-
ences in the ways in which particular celebrities and public presenta-
tions are produced and responded to (Ferris, 2007; Johansson, 2006;
Turner, 2004).
118 Daniel Ashton
Clearly acts of interpretation by audiences must be evaluated along-

side wider debates on media power and the ways in which audiences
are able to engage with media texts (Eldridge et al., 1997; Philo,
2008). What stands out for the purposes of this discussion though is
a marked difference between approaches within health communica-
tions that focus on the celebrity as a way to impart information and
inculcate behaviour change, and approaches from media and cultural
studies that are concerned with exploring meaning, identification and
engagement.
In connecting health communications with questions of audience
engagement, it is important to note a number of commentators who
have outlined conceptual and practical revisions in how ‘the public’
have been positioned and understood (see Blok et al., 2008; Stilgoe
and Wilsdon, 2009; Wilkinson, 2010). A central concern is a shift away
from a ‘deficit model’ of a public lacking in scientific knowledge which
‘downgrades other forms of knowledge, such as experiences and skills’
(Blok et al., 2008, p. 191), to one of dialogue and public engagement.
This concern for diverse public understandings and questions resonates
with audience reception studies approaches in which personal proc-
esses of meaning-making are investigated. The appreciation of personal
experiences and insights is central to the reconfiguration of notions of
expertise in ways that can help reconsider perspectives on the role of
celebrities as conduits of health information from authoritative sources.
As Lewis (2008, p. 2) outlines:
In the past the term ‘expert’, at least in the West, has tended to have
a fairly narrow range of associations. Experts were remote figures
associated with a distant realm of rational objective inquiry, such as
scientists, or individuals possessing specialised professional modes
of knowledge, such as doctors or lawyers; figures, in other words,
whose credentialed knowledge was seen as far removed from that of
the realm of ordinary, ‘lay’ knowledge.
In discussing environmental risks, Cottle (2006, pp. 128–129) points

to the articulation of social rationality based on ‘immediate experi-
ences and feelings, social relations and subjectivities’. As he goes on
to highlight, ‘countless popular cultural forms by definition and audi-
ence appeal position themselves in relation to the lifeworlds of ordi-
nary people and are thereby generically disposed to give expression
to something of their experiences and feelings, collective concerns
and moral values’ (Cottle, 2006, p. 129). In relation to current affairs
programmes, Macdonald (2000, p. 264) argues that, ‘personal case

studies and personal testimony can enable political insight and under-
standing through, rather than in spite of, their affecting qualities’.
Everyday cultural experiences and interests can be understood as part
of the meaning-making process through which ordinary people can
engage with and understand complex issues of the environment, poli-
tics and health. The following now turns to the personalised celebrity
account of Goody’s experiences of illness and dying and the associated
resonance with a wide public audience.
A distinguishing feature of Goody’s illness and dying in relation to
public understandings of cervical cancer was that coverage focused
on her experiences rather than the delivery of information as part of
an orchestrated health communication campaign. As Walter (2010)
argues, Goody’s life since Big Brother had been public and the basis for
her income, so there seemed no reason to develop a private self. Goody
would use her media exposure as a regular and normal element of her
persona to encourage awareness. To position herself as an embodi-
ment of her audience seemed to require no more than going about
maintaining her usual visibility. In this respect, Goody’s use of the
media is different from how it might be employed towards the aim
of communicating a message as part of a structured health commu-
nication campaign. For example, Kavka and West (2010, p. 223) note,
‘the intimate way in which Goody utilises the media – as a way of
comforting her child, allaying her own fears and warding off signs of
her physical debilitation’. Through signalling certain uses over others,
Goody’s position in relation to illness and cervical cancer is most
clearly identifiable as someone who can raise awareness based on their
personal accounts.
Goody’s personalised accounts were positioned, as with her celebrity
status, in terms of the ‘ordinary woman’. Goody emerged as a public
figure from an ordinary background and in this respect could act as a
lay figure for understanding and making sense of cervical cancer. Her
personal expertise was not regarded as an impoverished form of medi-
cally deficient expertise.
For Lewis (2008, p. 134), ‘one crucial way in which expertise has
borrowed from celebrity culture is paradoxically through its growing
association with the ordinary’. Whilst Lewis is here referring to popular
experts, for example on lifestyle television, these comments instruc-
tively signal that a core component of Goody’s celebrity was her ordi-
nariness and that this ordinariness allowed her to be positioned as an
expert, not in terms of rationality, objectivity and modes of professional
120 Daniel Ashton
knowledge, but rather in terms of the personal. Indeed, Walter (2010,

p. 857) suggests that Goody’s agency to ‘take control of [her] dying and
organise [her] affairs [ ... ] turned Goody into the ordinary hero beloved
of the news media’. Whilst Goody did not demonstrate a form of social
rationality that sought to respond or rebuke ‘expert’ knowledge, her
personal experiences represent a form of lay knowledge and her highly
mediated celebrity status positioned this knowledge and voice in promi-
nent ways that were encountered on a mass media scale.
It was the focus on the meanings that Goody gave to her dying and
her experiences of cancer that are central in comprehending Goody’s
public relationship with and commentary on cancer as a form of affec-
tive identification, more than as a form of strategic health communica-
tion. As Noland et al. (2009, p. 204) identify as part of their analysis of
three generations of celebrity involvement in relation to HIV/AIDS:
[ ... ] celebrities are not medical experts and thus occupy a space of
knowledge that indicates a clear affective investment in an issue [ ... ]
they are vehicles and embodiments of their audiences. And this is
their power – celebrities are embodiments of their audiences.
In this respect, Goody’s coverage was affective in nature and to achieve

this, exposure would remain on her and how she dealt with the disease.
As Walter (2009, online) notes, Goody’s ‘experience of dying was
woven into the everyday routine of millions who read the redtops, and
Goody chose to make public the meaning she gave to her dying’. There
were no claims to expertise, and awareness of and information on the
disease was closely bound up with Goody’s experience and narrative.
Goody’s coverage (taking OK! magazine where she had an exclusive
deal) or the coverage of Goody (taking other media outlets in which
there was a less direct and explicit relationship around her coverage)
may be seen most firmly as concerned with human interest and affec-
tive engagements. By focusing on her personal experiences and ways
of dealing with cervical cancer, Goody made be understood as a form
of ‘lay expert’.
Making her illness visible and encouraging young women to attend
screening tests can be seen as way in which her celebrity construc-
tion melded the ordinariness of illness and dying with the extraor-
dinariness of making it visible on a mass media scale. Tsaliki et al.
(2011, p. 11), writing on celebrity activism, consider this is an issue
of authenticity:
[ ... ] alongside rising skepticism and cynicism about the connection

between celebrity and authenticity in the latter part of the twentieth
century, and the awareness of the systematic production of celebrity
images and culture for commercial purposes, we, the audience, still
want to read unstaged and spontaneous good deeds into celebrity
actions.
The mediated ‘battle’ with illness disclosed by Goody is a way in which

she was ordinary and her ‘good deeds’, such as raising awareness, could
be seen by the audience as unstaged and authentic.
In turn, the affective engagements possible with specific celebri-
ties mean that such ‘good deeds’ and their nature as ‘authentic’ are not
uniformly interpreted. There is a significant body of existing literature
on the distance between personal experiences and mediated coverage of
cancer that helps highlight the diversity of potential understandings. For
example, in his analysis of news reports of ‘cancer heroics’, Seale (2002,
p. 122) points to the ‘construction of a narrative to show the cancer experi-
ence as meaningful in an attempt to imagine that it is possible for humans
to exert control over this illness’. In this analysis, wider structuring agen-
cies, namely heroic projects of self-identity in late modernity, connect
with how the newspapers framed and constructed the potential of cancer
stories to act as resources for readers and provide ‘meaningful interpreta-
tions of the experience of cancer’ (Seale, 2002, p. 124). In Seale’s subse-
quent co-authored work focusing on representations of childhood cancer,
the case is made that descriptions by parents bear little resemblance to
newspaper accounts (Dixon-Woods et al., 2003). The tension between
mass media coverage and personal experiences described here is taken up
in this discussion in terms of celebrity and, more specifically, Goody as an
ordinary celebrity as a lay expert speaking to/for/with the public.
For Lewis (2008, p. 132), ‘in representing two rather different types
of cultural authority, the expert and the celebrity are both neverthe-
less characterised by a similar tension between a claim to exceptional
or elite status and a kind of public representativeness’. Ordinariness was
the basis for Goody’s standing as a public representative and the ways in
which she was able to embody particular public demographics and make
visible everyday acts of health screenings and illness. In turn, that she
was so very public emerged from her being a celebrity and the excep-
tional status that entwined with this.
The following considers how illness and death are negotiated in terms
of public understandings of celebrity and how meanings constructed by
122 Daniel Ashton
audiences in relation to ‘celebrity’ in a general sense are a crucial part of

how a specific celebrity’s engagement with health issues are understood
and made sense of.
Researching public understandings of mediated

illness and dying
In exploring the social construction of Goody’s illness and dying this

chapter focuses on the diverse range of public/audience meanings
and understandings. In his discussion of media representations of the
emotions of people with cancer, Seale (2002) notes that audience uses
of the representations he examines are not investigated. Along the same
lines, Walter et al. (1995) note in their analysis of how news media
portray extraordinary deaths of ordinary UK citizens that there is little
research into the complexities of the reception of reporting by viewers
and readers.
Indeed, a strong leaning towards content analysis is evident and Walter
(2008, p. 324), with reference to his research on Goody, notes how it is
‘much easier to conduct content analysis of media texts than to inves-
tigate empirically how these texts are [ ... ] received’. A similar absence
of qualitative audience research can be identified in relation to celeb-
rity studies. In reviewing research into celebrity culture, Ferris makes
the point that ‘much social scientific writing on celebrity is partially or
entirely theoretical’ and that, ‘authors often use personal impressions
and observations to be selective and unsystematic’ (Ferris, 2007, p. 374).
This is not however to overlook the importance invested in audience
research. For Marshall (1997, p. 47):
The celebrity is a negotiated ‘terrain’ of significance. To a great degree,

the celebrity is a production of the dominant culture. It is produced
by a commodity system of cultural production and is produced with
the intentions of leading and/or representing. Nevertheless, the
celebrity’s meaning is constructed by the audience.
These comments signal the constructed nature of celebrity and the place
of a political economy of celebrity, but also that audience interpreta-
tion as a site of meaning-making is an important focus for analytical
attention.
Recognising limitations in existing empirical media reception research
on Goody’s illness and dying, the research project (Ashton and Feasey,
2013) this chapter draws on employed a grounded theory approach
(Glaser and Strauss, 1967; Dey, 1999) to move beyond ‘preconception

and conjecture’ (Glaser, 1978) and address how coverage of Goody’s
death intersects with how individuals make sense of their health
concerns (see Andrews, 2012, on the compatibility of social construc-
tionism and grounded theory). The influence of symbolic interac-
tionism on grounded theory (Blumer, 1969) was evident in this research
with the concern for exploring interpretative processes, personal actions
and responses based on social meanings. The public and social mean-
ings associated with Goody’s illness and dying were constructed across
a range of media forms and texts (Kavka and West, 2010; Walter, 2010),
and this research sought to explore how these social meanings were
made meaningful, or not.
This chapter draws on analysis from focus group research conducted
between May 2010 and January 2012 consisting of 107 participants
across 32 groups in London, Cardiff and the South West of the United
Kingdom (see Ashton and Feasey, 2013). As Buckingham (2009, p. 644)
notes, ‘the focus group is a very specific kind of communicative situ-
ation’ that with ‘skillful interviewing can help researchers gain access
to at least some of the “repertoire of discourses” that are available to
participants’. Krzyzanowski’s definition of focus groups emphasises that
a group will focus on specific issues, and the communicative dynamics
that ‘uniquely and specifically’ constitute the focus group:
Focus groups are used (a) whenever one is exploring shared (collec-
tive) or individual opinions and (b) whenever one is willing to empir-
ically test whether those beliefs and opinions are well grounded or
stable, or whether they are prone to change in the situation of inter-
action with others, who are possibly seen as equals (hence excluding
the principle of power) and are able to challenge and modify a partic-
ipant’s views. (Krzyzanowski, 2008, p. 256)
Focus groups were conducted with existing social groupings (see

Kitzinger and Philo, 1999) of higher education students, primary
school teachers, community group members, neighbours, and family.
Participants were asked what they remembered about Goody as a public
figure and if they could recall any health messages about cervical cancer
on the back of her public diagnosis and death. Focus groups were
recorded, transcribed and coded to identify key themes and signifi-
cant frames of reference as they emerged from participants. A coding
scheme for analysis emerged during the focus group data rather than
through the interview categories or any pre-conceptualisations and the
124 Daniel Ashton
following themes were identified: ‘ordinary celebrity’; ‘health attitudes

and actions’; ‘connections with personal experiences’; ‘public under-
standings’; and ‘imagery’ (see Ashton and Feasey, 2013). For Eldridge
et al. (1997, p. 165):
[ ... ] the dissemination of any particular message is also a social process

involving the exchange of information and ideas between friends,
relatives, and colleagues. The influence of any particular message will
therefore relate to its social ‘currency’: the value of a particular item
of information or a specific story in a social context and people’s will-
ingness to reiterate what they have read or seen.
The ‘currency’ of coverage of Goody’s mediated illness disclosure was

examined with specific focus on how participants remember the media
coverage of Goody during her illness. As Thomas (2008, p. 364) suggests
in his discussion of the death and mourning of Princess Diana, ‘while
most analyses are restricted to the mourning events themselves (usually
the period from the death/s to the funeral), if the chronology is extended
beyond this another set of attitudes slowly rises to the surface’. In this
respect, focus group research sought to examine (mis)rememberings
and responses, and how attitudes emerged in dialogue and conversation
between participants.
Mindful of previous research focusing on the Living with ... Jade TV
series (Kavka and West, 2010) and print media coverage (Woodthorpe,
2010; Walter, 2010), this research followed the points of references and
connections offered by participants. This research makes no claims
to completeness of coverage and engages purposefully with partici-
pants’ recollections. In this respect caveats such as Woodthorpe’s
(2010) on her research into newspapers are required less. Moreover,
claims are not made as to how representative this sample of focus
group participants is. Any comments should be seen as the explora-
tion of some public understandings as a way to further understanding
of how celebrity disclosure and coverage of illness and death can be
understood.
Walter (2009: online) hints at the possibilities of public perspectives
and positions in his analysis of Goody when he suggests that:
For those distant from dying, Jade’s breaking the normal bounds of
privacy may have been informative, illuminating a normal hidden
reality. For those immersed in dying or mourning, it may have felt
inauthentic to be drawn into the dying story or someone they did

not know; for others, and I have anecdotal evidence of this, identi-
fication with Jade’s private-made-public sorrows may have added to
their own.
Elaborating on these points, the following findings emerged from focus

group sessions and illustrate the contested nature of Goody as a public
figure and how her lay voice was encountered and responded to.
Public and personal experiences
The following addresses three themes that emerged from the focus groups
in which participants considered the extent to which the mass media social
construction of Goody’s illness and dying resonated or not with the social
constructions they held and negotiated in focus group interactions.
Questioning ordinariness
With Goody, there is a strong suggestion of a close proximity and mean-
ingful resonance with members of the public, and that the public and
prominent handling of death by such an ordinary figure could provide
a resource and way to make sense of one’s own circumstances. This was
explicit in the press coverage on the ‘Jade Effect’ (see Sinclair, 2009) and
focus group participants also indicate how the coverage of Goody made
them think seriously about their own health and appreciate the poten-
tial, widespread health benefits of this coverage:
I think people who actually had cancer, might be good for them [the
coverage and publicity] as well because then they do actually see [ ... ]
that there is help you can get. (FG17, participant 5)
There must some people who could have picked up on her story, even
just one person [and] it could have saved her life. (FG4, participant 1)
In turn, focus group contributions reveal a range of tensions around

expectations of ordinary expertise and how differing celebrity construc-
tions and framings prove problematic in dialogue with personal accounts.
This was clear in the way a number of participants would draw compari-
sons between Goody and other celebrities, including Kylie Minogue and
Terry Pratchett, and the way these celebrity figures would talk about and
present illness.
126 Daniel Ashton
More pronounced in the focus group responses was the comparison

between personal experiences and Goody’s experiences, and on many
occasions personal experiences would inform focus group discussions.
This became apparent in the focus group preliminary questionnaire
when 85 answered ‘yes’ and 22 answered ‘no’ to the question, ‘have
you, a member of your family or close friend ever been diagnosed with
cancer?’. As one participant stated during their focus group, ‘everyone
has always a current cancer in the family’ (FG22, participant 2).
Despite her background and positioning as a lay voice, many focus
group participants did not regard Goody as ordinary, and this impacted
on her perceived entitlement to speak and how participants responded
to her personal story. Johansson (2006, p. 351) argues that, ‘as personal
experience provided an identificatory opening into another world, it is
also very clear [ ... ] that reading about celebrities could serve as a grim
reminder of [ ... ] very different circumstances’. This sense of a grim but
distant reminder can be seen in the following indicative comments:
My mum had ovarian cancer and she died in 2004. And I just didn’t
relate to Jade Goody at all. (FG17, participant 2)
You kind of can deal with it in your own way. And if you have some-
body with it, it would affect ... I don’t think you’d want to watch it, to be
honest. I wouldn’t if I knew a relative that had it. (FG23, participant 2)
Based on actual and perceived experiences of what ‘normal’ illness and

dying would involve, these participants articulate their distance from
Goody’s experiences. Similarly, the following comments indicate that
any familiarity with the public persona and any general sense of sadness
did not translate into anything more personally meaningful than a
reminder:
She’s a celebrity and I don’t know her, and although, yes, of course
it’s sad, you’re sort of very distanced from it because you don’t know
them, obviously. It’s, you know, not like a relative; she’s not the only
person in the world who’s got kids who’s young, who’s got cancer in
the terminal stages. (FG13, participant 4)
This comment also signals how distance emerges in relation to celebrity.

Whilst Goody’s experiences of illness and dying were ordinary for her
given her mediated persona up until this point, this platform to share
her illness and dying was not ordinary.
This issue of distance from and disconnection with an apparently prox-

imate and meaningful lay voice was evident in a participant’s comment
that depictions of Goody encountered through OK! magazine, with which
Goody had an exclusivity arrangement, were ‘less an inspiration [and]
more a burden [ ... ] living up to her version of death’ (FG10, participant 6).
A similar interpretation is presented in a different focus group session:
[ ... ] my friends’ mum, she dies like two weeks after Jade did [ ... ] it’s just
strange because, in one way, it was good that she was raising aware-
ness, but in another way, it’s like more, ‘What about her? What about
the kind of other, normal people’s stories?’. (FG11, participant 1)
These comments provide an explicit account of how public understandings

and responses generated through focus group research present a tension
and disconnection with what counts as ordinary and how Goody’s ordi-
nary stories sit in relation to ‘other, normal people’s stories’. Indeed, for
some it was more than enough to have a close and personal relationship
to illness. Coverage of Goody existed less to raise awareness and/or act as
a resource for coping, and more as an uncomfortable reminder: ‘you prob-
ably don’t want to follow it because you kind have been through it and
you don’t want to go through it again with a public figure’ (FG12, partici-
pant 1). In this respect, a visible and prominent story is not regarded as an
instructive resource and Goody is regarded primarily as a distant celebrity
whose experiences and privileges are not normal.
Imag(in)ing Illness
Offering specific insights into feelings of disconnection, a number of
participants addressed the issue of appearance, with one noting: ‘if people
are going to read this for the sake of being able to recognise what happens
when someone is ill they won’t be able to identify with her [ ... ] this is not
how cancer looks’ (FG2, participant 4). In the same way, another respondent
made the point that ‘Jade still looks like Jade, dare I say it, she looks really
good because she is tanned, thin and smiling’ (FG9, participant 1).
Contrasts with personal experiences were common, and another
participant noted, ‘that’s one thing that struck me that she looked so
well because my granddads both have cancer and they looked ill’ (FG2,
participant 5). The young woman who had seen her own friend die of
cancer made the point that ‘you’d see the glamorous images of Jade and
feel terrible about yourself’ (FG2, participant 6). The respondents were
well aware that, in their words ‘you wouldn’t get the nitty gritty truth
from the magazine [just] all the glamourised stuff’ (FG1, participant
128 Daniel Ashton
1) – this was of course in keeping with the ethos and entertainment

criteria of OK! (see Ashton and Feasey, 2013). Moreover, although
there was often agreement on Goody’s bravery to not wear a wig or
hair piece in OK! magazine’s professional images, they also acknowl-
edged that ‘she doesn’t look like a cancer patient’ because she had ‘still
got make-up on’ (FG9, participant 3). Walter makes this point when
he notes that, ‘pictures of her face – often the only part of her body
exposed – did not fit common stereotypes of the gaunt, skeletal person
in end-stage cancer, nor of the steroid-induced overweight patient’
(Walter, 2010, p. 856). For these focus group participants, Goody repre-
sented a barely recognisable patient who was primarily presented in
terms of glamour and magazine cover style. The question of identifica-
tion, central to the notion of Goody as a lay expert able to generate
meaningful connections with specific publics, is a considerable point of
tension here. Whilst Goody ostensibly is positioned as ordinary, it was
clear that aspects of her illness were not regarded as ordinary. Whatever
her background and the connections that could be made (or not) in
terms of class (Walter, 2009), for a significant number of participants,
Goody’s experiences of illness were not those that resonated.
A number of participants flagged up her different appearance specifi-
cally with reference to the trappings of celebrity. Kavka and West make
this point when they suggest that, ‘[o]n one hand [ ... ] Jade Goody,
like anyone else who is “losing the battle” against advanced cancer,
was visibly in the grasp of real death. On the other hand, the celebrity
persona is always a battleground between manufacture and authen-
ticity’ (Kavka and West, 2010, p. 228). Even the forms of expertise or
authority that Goody’s body could provide were seemingly contested
in the light of her celebrity status and biography because participants
widely agreed that she had been afforded, or rather been able to afford,
forms of physical ‘beautification’ that they, their friends or their family
would not. In his discussion of popular reactions to the death of Princess
Diana, Thomas (2008, p. 367) considers the tension of difference and
identification and notes that, ‘media construction of celebrity ordinari-
ness can look frail, however, when compared to the attitudes of ordi-
nary hard-working folk’. He points to a ‘blunt awareness’ that is evident
here in relation to Goody’s appearance. This is articulated by one focus
group participant in terms of the ongoing performance of celebrity and
illness to the point at which credulity was tested:
I remember when she was first diagnosed. I remember seeing pictures

in the newspaper of her with just that look of anguish on her face;
you know, the tears and everything. And that was horrible [ ... ] And
I remember seeing pictures of her preparing for her wedding ... and
then it was almost getting humorous by that stage. And they were
putting the bald wigs on because she’s lost her hair and so on. So it
was getting more of kind of humorous, but the very first pictures I
saw, I thought, were very sad – very, very sad. (FG15, participant 3)
An indication is provided here of how celebrity manufacture intervenes

in and on Goody’s body to the extent that the ill and dying body is not
regarded as such. The issue of disconnection is specifically evident in
how Goody is viewed as a celebrity. She could not be the ‘ordinary hero’
who finds strength to face dying of cancer that Seale (2002) refers to,
because of the perceived excesses of celebrity and the contested nature
of her ‘ordinariness’.
Private death and public celebrity

Goody’s celebrity status was not fixed and static and the very coverage
of her illness and death informed how she might be encountered as
a celebrity. As one participant noted, ‘Yeah, it’s just sad she got so,
so, much more famous when she was dying’ (FG11, participant 1).
Here then, Goody’s capacity to act as an ordinary and accessible lay
voice on illness was undermined by the increased visibility of her
dealing with the illness in the public way she was accustomed to.
Whilst many participants recognised the awareness-raising aspect
and that her background and circumstances could speak to specific
groups, a compelling perspective raised across the focus groups was
how (dis)entitlement was intricately enmeshed with celebrity status.
For example, the following comments illustrate how the celebrity
experience itself as it is maintained during illness is confounding: ‘I
think that normal people who suffer from it can’t understand how
somebody would want to go and put themselves out and that, because
they just feel so absolutely awful’ (FG15, participant 3). Returning to
Walter’s analysis, it seems entirely fitting that her illness would be
public given the way she lived her life. In the way it jars with what
focus participants might expect though, this is another instance in
which Goody departs from their estimation of ordinary.
Whilst emerging as a celebrity from a very ordinary background and
keen to offer her own experiences, and only her own experiences, as
a form of ‘death education’ (Walter, 2009), a number of participants
in focus groups were sharp in relaying the differences they felt. These
comments add qualitative depth to Walter’s (2009, online) anecdotal
130 Daniel Ashton
comments that ‘identification with Jade’s private-made-public sorrows’

by members of the public might add to their own sorrows by high-
lighting a lack of identification. Walter (2009, online) makes the claim
that, ‘audiences knew that Jade’s selling her experience of dying to the
media is not an ordinary way to die’. The act of identifying difference
resonates with Carpentier and Hannot’s (2009, p. 613) comments in
their research on ordinary people and the appreciation of authenticity:
‘[focus group participants] articulate ordinary people in an antagonistic
position towards the more elitist groups like celebrities, politicians,
experts and media professionals, and use that antagonism to expand
their appreciation for the authenticity of ordinary people.’ Comments
from focus group participants suggest they saw this not as an ordinary
way to die and, furthermore, there is a questioning of Goody’s entitle-
ment to speak. In this respect, her celebrity status meant that she was
ordinary but not ‘us’ and Goody’s position as lay expert was unstable
and a point of tension.
Conclusion
A recurring theme from focus group participants discussed in this chapter

concerns a differentiation between Goody on one hand and ordinary
people and ordinary death on the other. This differentiation is particularly
pronounced given the purported ordinary status of Goody and the way
in which her experiences of illness and dying were held to resonate with
a wide public audience. In their discussion of celebrity and authenticity,
Carpentier and Hannot (2009, p. 606) suggest that, ‘when ordinary people
are seen to appear on screen only to become famous, they are again no
longer considered authentic, and they become pseudo-celebrities’. Whilst
for Goody a high-profile celebrity image was an ordinary and authentic
identity, her illness and death were regarded more as semi-authentic. In
relation to comments from their focus group participants, Carpentier and
Hannot (2009, p. 608) identify how, ‘celebrities are still allowed access
to lived experience as well, rendering their identities semi-authentic’.
Goody’s illness and dying could be regarded as the kind of lived experience
in which authenticity would be evident. For the focus group participants
of this research, illness as an authentic domain and Goody’s experience
as an ordinary patient and lay expert were instrumentally informed by
understandings and perspectives on celebrity culture. The social construc-
tion of Goody’s illness and dying was the social construction of a celeb-
rity’s illness and dying – seemingly regardless of how a celebrity identity
was an/the authentic identity of Goody.
This chapter has sought to highlight the multiple ways in which

illness and dying are constructed and understood with specific rela-
tion to notions of expertise, authenticity and celebrity. The Jade Goody
Effect of 2009 was held up as a prominent example of how celebrities
can inform public decision making on matters of health and as someone
whose response to illness from cancer could help others make sense of
their own personal circumstances. Her personal experiences provided
a lay account and her voice was positioned as ordinary both in terms
of celebrityhood and her experiences of cervical cancer. This exper-
tise however was contested in research examining public understand-
ings of Goody’s high profile, mass mediated illness. Through reception
research, assumptions on the resonance of a specific celebrity speaking
for and to the ‘public’ were empirically examined. Tensions existed
around the notion of ordinariness, and her illness and dying were
regarded as distant and unidentifiable compared to other more proxi-
mate and personal experiences. The ordinariness of the experience for
Goody could be understood as a public illness that corresponded with
her public profile. Focus group participants however contested these
experiences and articulated responses indicating how they were at odds
with expectations and assumptions of normal illness and dying. Whilst
maintaining a public profile could be seen as authentic for Goody the
celebrity, within the context of illness and dying these activities and
experiences were not regarded as ordinary. Rather, perspectives ques-
tioning the authenticity of celebrity were carried over to understandings
of the authenticity of Goody’s illness and dying. The very basis for her
‘ordinary’ expertise was challenged and her entitlement to speak as a lay
expert undermined in the face of her celebrity status.
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Part III
Political and Ethical Dimensions
of Death
7
Death, Fantasy, and the Ethics of
Mourning
Jason Glynos
[We are] of course prepared to maintain that death ... [is] natural,
undeniable and unavoidable. In reality, however, we [are] accus-
tomed to behave as if it were otherwise.
(Freud, 1915, p. 289)
We have finished grieving and ... now it is time for resolute action to
take the place of grief.
(George W Bush, 10 days after 9/11
(as quoted in Butler, 2004, p. 29))
Introduction
Drawing on discourse theory and psychoanalysis this chapter develops

a perspective with which to understand and evaluate phenomena asso-
ciated with death and loss.1 This perspective takes seriously the basic
insight of constructionist approaches to the study of social phenomena,
namely, that understanding the dynamics of human practices requires
acknowledging the key role that meaning and subjectivity play in their
stabilisation and transformation (see, for example, Carpentier and Van
Brussel, 2012). The particular social constructionist approach developed
in this chapter draws on the categories of discourse and contingency, as
well as the category of fantasy, stressing the potentially ethical dimen-
sion of practices of mourning.
I suggest that one outcome of adopting such a psychoanalytically
informed, discourse-theoretical perspective is a renewed focus on how
public and institutionally mediated practices of mourning might enable
or frustrate the processing of loss.
137
138 Jason Glynos
The chapter is divided into four parts. It begins by sketching out some
basic categories of post-structuralist discourse theory, such as discourse,
contingency, and fantasy, showing how they can be used to grasp the
ideological and ethical dimensions of social relations. In part II, I sketch
out a picture of how mourning is approached from the point of view
of psychoanalysis, understood here as one among a range of possible
disciplinary traditions offering a perspective on death and mourning,
albeit a fairly prominent one. In doing so I rely primarily on Freud’s
views, as elaborated in his classic essay ‘Mourning and Melancholia’
(1917 [1915]), but I also forge some initial connections with the cate-
gory of fantasy, showing its promise in enhancing our understanding of
mourning, as well as the promise of mourning in enhancing our under-
standing of an idea that has been linked to the critique of ideology: the
idea of ‘crossing the fantasy’ (Žižek, 1989; Glynos, 2001). Part III delves
more deeply into mourning from the point of view of its conditions of
possibility, articulating these conditions in terms of a shared recogni-
tion of loss, and an appropriate context within which to process loss.
The final part – part IV – is devoted to a stylised illustration of the way
mourning and its conditions of possibility intersect with fantasy and
discourse, particularly when trying to understand practices organised
around death from an analytical and critical perspective.
Discourse, contingency, fantasy
As an ontological horizon, the category of discourse in post-structuralism

signals the centrality of meaning and its underlying structure in our
grasp of identity and social relations. But a post-structuralist ontology
emphasises also the centrality of discursive limits (Glynos and Howarth,
2007; Glynos, 2012). Often associated with the term radical contingency,
these limits are understood to be ontologically constitutive, not merely
empirical (Laclau and Mouffe, 1987). Contingency is considered radical
in the sense that it points to an ontological impossibility that charac-
terises discourse and subjectivity as such: the constitutive failure of any
social objectivity to attain a full identity (Laclau, 1991). Appearing in a
range of theoretical guises (‘split subjectivity’, ‘lack in the Other’, ‘struc-
tural undecidability’, ‘irreducible negativity’, and so on) such radical
contingency goes to the root of the subject’s sense of being.
The subject’s confrontation with (radical) contingency provokes
anxiety, and psychoanalysis suggests that the degree of our affec-
tive investment in one or another discursive element is linked to
our capacity to tolerate anxiety. The psychic role of key discursive
Death, Fantasy, and the Ethics of Mourning 139
elements – fantasmatic elements in particular – is to keep the anxiety

associated with radical contingency at bay, to close off from view the
idea that there is no ultimate law governing our social relations. Starting
with the category of ‘radical contingency’, however, one can sketch out
two key dimensions of a social ontology that will be helpful in situating
the role fantasy can play in developing a critical account of practices
linked to death. These comprise the ideological and ethical dimensions
of social relations (Glynos and Howarth, 2007).
While the ethical dimension speaks to the ways in which subjects
confront the radical contingency of social relations in a rather direct
way, the ideological dimension designates the ways in which subjects
are complicit in avoiding a more direct stance. My argument is that the
categories of fantasy and mourning can be usefully deployed to elucidate
the character of the ideological–ethical axis in a way that can enhance
our critical account of practices linked to death and loss.
In certain strands of discourse theory, the ideological dimension has
already been linked to the logic of fantasy. In this view, to be gripped by
an ideology is to be strongly invested in fantasy (Glynos, 2001, 2011).
Slavoj Žižek has been particularly influential in drawing out the impli-
cations of this link, often identifying ‘ideological critique’ with the idea
of ‘traversing the fantasy’ (Žižek, 1989). In this chapter I suggest that
mourning can be mapped onto this process of ‘traversal’, thereby high-
lighting the way mourning can be understood (via fantasy) as an ethical
practice. In the remainder of this section I elaborate briefly what I take
to be the main features of fantasy, before moving, in the next section,
to discuss the character of mourning and how a turn to fantasy can help
illuminate this practice.
I draw on Freudian and Lacanian psychoanalysis in elaborating the
notion of fantasy. In a first sweep, we could say that like most narra-
tives, fantasies will invariably feature ideals and a set of obstacles to the
realisation of such ideals. But what allows us to qualify a narrative as a
specifically fantasmatic narrative is the fact that it is tied, through the
subject, to a logic of desire. What is distinctive about the logic of desire,
from a psychoanalytic point of view, is that it relies on there being, in
fantasy, elements that resist public–official disclosure: elements whose
sudden exposure may provoke embarrassment or guilt. Often associated
with transgressions of an ideal or norm, the logic of desire produces
what Lacanian scholars call ‘enjoyment’, a kind of deep satisfaction
which need not be consciously experienced as pleasurable. One further,
but crucial, role attributed to fantasy is that it furnishes the subject with
a foundational guarantee that protects it against the anxiety associated
140 Jason Glynos
with radical contingency. Such fantasmatic protection can, moreover,

take on a welcoming beatific hue, or on the contrary, a fearful horrific
hue. Either way a reconfiguration of our fantasmatic coordinates can
have profound ramifications for how we relate to the world, but it is
equally true that perturbations and dislocations in social life can have
potentially destabilising effects upon our fantasy life. Since fantasy is a
kind of veil protecting the subject from the anxiety linked to the radical
contingency of social relations, dislocations can render anxiety more
proximate, often triggering efforts to re-elaborate the subject’s fantas-
matic narrative in a way that restores an acceptable distance between
the subject and its anxiety.
Death in psychoanalytic theory: the promise of

fantasy and the ethics of mourning
Death, and the prospect of death, can be experienced as just such a dislo-
cation, registering the contingent character of social existence and the
social relations on which such existence depends. According to Freud
mourning involves detaching the survivors’ memories and hopes from
the dead (Freud, 1917, p. 255).
Of course, we are often unaware of all the memories and expecta-
tions we associate with the deceased, but the event of death can, under
certain conditions, make them more accessible, enabling the process
of mourning to take place, making our attachments to the deceased
conscious and meeting our memories and associations with the judge-
ment that they are no longer alive. Such ‘cycles of mourning’ enable
us to separate, at a deep level, the experience of our interactions with
the deceased as a once living human being from the deceased’s role in
buttressing our identities and desires. Mourning the loss of someone is
thus largely about mourning the loss of our attachment to the material
support underpinning the symbolic and/or imaginary roles the deceased
played for us in shaping our social relations and fantasy life.
One of Freud’s key observations, however, was to note how there is
nothing ‘natural’ about mourning. On the contrary, there is a ‘revolt’ in
our minds against mourning (Freud, 1917, p. 248; Freud, 1915, p. 306):
‘it is a matter of general observation that people never willingly abandon
a libidinal position, not even, indeed, when a substitute is already beck-
oning to them’ (Freud, 1917, p. 244). As far as I’m aware, Freud himself
makes little explicit use of the concept of fantasy in elaborating his
ideas about mourning, and yet this category can serve us well in making
sense out of this general observation. The death of someone we know
may trigger powerful affective responses of whose true sources we are

only dimly aware because they tend to reside in our fantasy life, large
portions of which we actively keep out of conscious awareness. Since
the strength of our attachment to the deceased is a function of the way
we have scripted him or her into our fantasy life; since much of this is
unconscious; and moreover, since fantasy functions as a defence against
anxiety; we can understand perhaps why the mourning process may
provoke a ‘revolt’ in our minds.
And yet mourning entails bringing into consciousness those uncon-
scious relations and identifications, however unsettling. It requires
bringing these elements into consciousness precisely in order to make
them the object of our judgement: to declare that the identificatory
support the deceased furnished us is ‘gone forever’. Mourning the loss
of someone is thus fundamentally about mourning the loss of part of
our own self: our moorings or underlying guarantees. Clearly, mourning
is not the most natural option available to the person affected by the
death of someone else. More natural is for us to remain invested in those
memories and unconscious identifications and to deny the significance
of the loss.
It appears, then, that in the absence of considerable effort on the
part of the subject, ‘complicated’ or ‘blocked’ mourning would be a
more likely pathway to follow. Instead of acknowledging and affirming
the loss of someone, we might become heavily invested in blaming
others for the death of the deceased (exhibiting traits of paranoia or
ressentiment), we might blame the deceased him or herself for leaving
us, we might blame ourselves (as in melancholia, for example), or we
might develop a somatisation that indirectly registers the loss in place
of our judgement (as in a conversion symptom, for example). There
are many ways to derail or block the mourning process. In fact, Freud
talked not simply about mourning but about ‘the work of mourning’ in
order to underline the considerable challenge associated with choosing
mourning as a pathway (Freud, 1917, pp. 244–246, 252–253). It is for this
reason that it is plausible to talk about an ethics of mourning, entailing
a kind of ‘crossing the fantasy’. In other words, the work of mourning
demands a sensibility on the part of the subject that renders it atten-
tive to, rather than ready to flee from, the anxiety associated with the
radical contingency of social life. Such attentiveness to anxiety enables
the subject to bring key elements of its fantasy life into conscious-
ness. Blocked mourning, on the other hand, would fall on the side of
eschewing this anxiety by retaining an overinvested and unconscious
relation to its fantasy life.
142 Jason Glynos
We could thus briefly summarise what mourning entails on the basis

of our discussion so far, namely: (1) mapping out the contours of our
fantasy: making conscious the elements of our unconscious life in order
to render visible our investment in key identifications with the deceased;
(2) detachment through judgement: acknowledging and affirming we
no longer have the identificatory support the deceased embodied for
us; and (3) ethics: adopting a stance toward radical contingency that
renders possible a cyclical movement between (1) and (2).
Mourning: conditions of possibility
From what has been said so far, it is clear that mourning occupies an ethi-
cally privileged position in relation to the case of ‘blocked mourning’,
coinciding with the traversal of fantasy. In a context where blocked
mourning appears to be the easier option, the ethically privileged posi-
tion of mourning invites an obvious follow-up question: under what
conditions is mourning likely to take place?
One of the most striking features of Freud’s classic text on mourning
and melancholia, as well as many psychoanalytic responses to this text,
is how mourning is treated as an individual task, often demanding almost
heroic qualities on the part of the subject.
This stands in stark contrast to the rather obvious centrality attributed
to public mourning rituals in many societies, and by anthropologists,
sociologists, and historians studying those societies (for example: Gorer,
1965; Kaufman and Morgan, 2005; Brooks-Gordon et al., 2007; Hallam
et al., 1999; Jalland, 2010). These latter interventions demonstrate a rich
geographical and historical diversity in practices associated with death
and dying, suggesting the mourning process should not be understood
narrowly in terms of individual capacities and responsibilities, but in
broader terms that also recognise social and collective inputs as essential
to getting the mourning process off the ground.
What such literature points to is the significant role public displays
of mourning play in making it possible for individuals and groups to
process their grief. In this view, the relation of the bereaved to the dead
person is, and should be understood as, mediated by how those around
the subject have responded to the death. In other words, death does
not naturally or automatically become a loss that can be processed by
an individual or group. Public recognition, or simply having a witness,
appears to be a key condition in transforming death into a ‘loss’ that the
subject can then go to ‘work’ on. The absence of such public displays of
recognition can therefore prevent the process of mourning from taking
place, amplifying thereby the degree of suffering. For example, in a

society that tends to give little time and space to the act of ‘witnessing’
and associated public displays of recognition with respect to miscar-
riages and stillbirths, or in relation to dead soldiers flown back from the
battle front, we would expect an intensification of the suffering in those
relatives and friends immediately affected.
These psychoanalytic and anthropological insights raise broader ques-
tions about what impact the frequently noted amplification of individu-
alising tendencies and concomitant erosion of public mourning rituals
might have on our capacity to mourn loss. But what is perhaps not
emphasised enough in thinking about the mourning process is the crea-
tive dimension associated with this ethical exercise. As Leader puts it:
The cliché that losses need to be worked through so that we can

move beyond them suggests that mourning is something that can be
done and dusted. We are encouraged so often to ‘get over’ a loss, yet
bereaved people and those who have experienced tragic losses know
full well that it is less a question of getting over a loss and on with
life, than finding a way to make that loss a part of one’s life. Living
with loss is what matters, and writers and artists show us the many
different ways in which this can be done. (Leader, 2009, p. 99)
But again, a key condition for this creative possibility hinges on wider
social and political factors: ‘The relation of the bereaved to the dead
person is one thing, but this will be affected by how those around the
bereaved have responded to the loss’ (Leader, 2009, p. 85).
One particularly striking way for those around us to respond to loss
is to deny it by closing down the space and time needed to develop
a stance towards it. This may appear extreme, but some scholars have
sought to show that this is not necessarily an unusual response. Susan
Faludi and Judith Butler, for example, have both commented on the
US response to 9/11 in a way that could readily be described as a case
of ‘blocked mourning’ (Faludi, 2007; Butler, 2004). How can loss be
properly registered and mourned when, just ten days after the felling
of the twin towers, the American president could declare that ‘we have
finished grieving and that now is the time for resolute action to take the
place of grief’ (Butler, 2004, p. 29)?
Moreover, when civilian and soldier deaths on all sides in the Iraq and
Afghanistan wars are shuffled to the margins of elite and popular media
discourse through a mixture of official and unofficial bans, and when
there is relatively little room for public and performative recognition of
144 Jason Glynos
a common vulnerability that transcends national boundaries, then key

conditions for processing grief and loss in the mode of mourning appear
to be missing (cf. Savage, 2011; Figlio, 2012). What we get instead is a
‘denial of this vulnerability through a fantasy of mastery (an institu-
tionalised fantasy of mastery) [that] can fuel the instruments of war’
(Butler, 2004, p. 29). No doubt this expresses a form of coping that many
can understand and identify with, but one suspects that it is not of the
ethical sort alluded to earlier.
The above discussion reflects an important shift of emphasis from the
individual to the collective aspects of how death is registered and expe-
rienced. In particular, the capacity of a nation to collectively mourn
the death of its civilians or soldiers appears to have as one essential
precondition the public registration of death as loss. This can take the
form of official public pronouncements, events, and rituals, or widely
disseminated media reports whose main effect, however, is the publicly
authorised inscription of this loss in the symbolic fabric of a culture.
In this way, key representatives of legitimately authorised institutions
serve as third party witnesses to physical death, thereby registering it
symbolically, and thus transforming death into loss. In the absence of
the public–formal registration of death through a symbolic figure or
ritual, grief becomes difficult to process. When the fate of a person is not
yet known (as in some cases of abduction), when deaths are suspected or
even known but officially denied (as in some cases of state repression, for
example the ‘disappeared’ under Argentina’s regime of military dictator-
ship), when deaths are not widely reported and given due recognition,
when governments ban the photographing of returning war casualties
(especially when a war prosecuted by a nation does not have full public
support, as in the Vietnam or Iraq wars), when a suitable burial site
is not granted, or when the institutional figures performing the public
registration of death have been discredited, then a basic precondition of
the mourning process does not obtain.
A first condition of mourning, then, entails an event or site that enacts
for an individual or collective subject a publicly shared recognition of loss.
There are many situations in which this condition does not hold, as the
previously cited examples illustrate. It is thus a non-trivial condition:
the idea of ‘loss’ does not emerge naturally upon death: it has to be
brought into being through processes of enactment, construction, and
sustenance. A publicly shared recognition of loss comprises not simply
a publicly shared recognition that a human being has perished. It also
comprises a publicly shared recognition that a person is worthy of our
respect as a human being. My claim is that the publicly shared recognition
of loss should be understood as a preliminary and rather basic condi-

tion for mourning. It is a condition, moreover, that could be said to
apply with equal force to individual mourning and collective mourning,
although these two processes often also find themselves orbiting and
mutually influencing one another.
But if the public registration of physical death is a necessary precon-
dition for mourning, such a publicly shared recognition of loss is by
no means sufficient to guarantee that mourning will in fact take place.
Freud regarded the task of mourning as hard ‘work’, and so even with
the public acknowledgement and symbolic inscription of death as loss,
blocked mourning is a possible, even likely, outcome. Beyond a publicly
shared recognition of loss, mourning points to a further condition. It
demands an appropriate context within which loss can be processed ethically
and creatively integrated into one’s individual and collective life.
As was the case with the first condition, this second condition is non-
trivial. It is also complicated by the fact that different individuals and
communities, and different groups within communities, are living with
different histories, as well as different institutional, technological, and
other constraints (cf. Grainger, 2012; Wortman and Silver, 1989; Gibson,
2004, 2008; Hallam et al., 1999; Howarth, 2007). Establishing how a
death matters to us involves determining how the deceased helped
dramatise our relation to the world: how did the deceased support our
imaginary, symbolic, or real identifications? Or, more pointedly, how
did certain traits of the deceased support our imaginary, symbolic,
or real identifications? How did the roles or ideals that the deceased
embodied for us exert their conscious and unconscious influence over
us? What does this process reveal to us about the fantasmatic guarantors
that underpin who we are? How can this loss become a creative force,
rather than a source of inward suffering or ressentiment? (cf. Hoggett
et al., 2013). This process of questioning, discovery, acknowledgement,
judgement, and construction is the process of mourning, visiting and
revisiting our memories, our discoveries, and our constructions, over
and over again in a virtuous cycle. It entails acknowledging, at some
level, that the person, now dead, embodied for us key identificatory
support(s), following up this acknowledgement with the judgement that
that this support is gone forever, and that loss must be confronted and
used as a creative force to support life.
Importantly, however, mourning entails deducing (or ‘retroducing’)
more precisely what those identificatory supports were supports of. And
it is here that the promise of fantasy as a category can be discerned, since
this discovery-cum-construction process can be understood in terms of
146 Jason Glynos
mapping the subject’s fantasy: the concrete materiality of the person

now dead served as support not just for an idea or ideal, but our rela-
tion to this idea or ideal, neither of which we may be fully conscious.
Such ideas might include such things as innocence, pride, (super)power,
protection, freedom, democracy, and so on (cf. Freud, 1917, p. 243).
The dead person embodied these ideals for us, made them real for us
in helping us enact a fantasmatic relation to them, and so his or her
physical death produces a destabilising or dislocatory effect. This is why
mourning demands an ‘appropriate context’. It requires the right sort of
environmental or contextual conditions to enable a kind of ‘controlled
destabilisation’ or ‘controlled anxiety’ to take place, since it is under
such conditions that the character of our identifications can most fully
come into view. Once the character and significance of our identifica-
tions dawns on us, mourning immediately demands we acknowledge
that these identifications, not merely the supports of such identifica-
tions, can shift.
The subject acknowledges how s/he is implicated in the process and
must, through repeated cycles of discovery, acknowledgement, construc-
tion, and judgement, gradually disinvest herself from those attachments.
She cannot avoid taking responsibility in this process, whether by
adopting new identificatory supports, new concrete identifications, and
new modes of attachment, or by eschewing these more open and diffi-
cult pathways. Mourning, as an ethical response, demands the subject
find a way to make loss part of one’s life in a way that acknowledges
rather than represses it. In this view, the subject can fail to confront
loss in any number of ways, justifying Freud’s view that the mourning
process is complex and demanding, and certainly not an easy option.
Importantly, however, this ethical response also demands that certain
conditions obtain.
Thus a key ethical and political question here is whether the space and
time given to us is appropriate to the task of determining how a death matters
to us and how loss can be transformed into a creative and active shaper of
individual and collective life. In any one case, what period of time is appro-
priate to devote to grieving? What burial site, with what landscape or
degree of modesty, is appropriate? What is an appropriate response by
the relevant public authorities or the media? Clearly, the condition of
‘appropriate context’ provokes many open-ended questions that have
no easy answers. It invites careful deliberation and demands judge-
ments to be made in complex and over-determined circumstances,
not least because ascertaining the ‘appropriate context’ can – and
perhaps should – include as an internal moment a determination of
the conditions under which the conditions of mourning should be discussed.

It is enough to consider the debates surrounding what constitutes just
such an appropriate context for the mourning of Margaret Thatcher’s
death in 2013.
The complex and over-determined character of judgements made
in relation to ‘appropriate context’ was perhaps more apparent in the
case of Lady Thatcher’s death than in the case of Princess Diana’s death
because Thatcher was widely acknowledged to be a divisive figure. The
point is that this whole process of determining an ‘appropriate context’
is a difficult one that involves ascertaining the conditions under which
we can best grasp what the deceased meant for us and what the deceased
can mean for us, as well as second-order judgements about the condi-
tions under which the conditions of mourning can be discussed and
debated. But what is clear is that discourse, fantasy, and judgement are
central to mourning, and that the mourning process can be blocked or
derailed at any point along any one of its many cycles when its condi-
tions cease to be met. The relation between the process of mourning and
its conditions of possibility can thus be summarised as in Figure 7.1.
Event / Dislocation
A A, B, C, D, E, F... =
Points of potential
‘escape’ due to F
g
blockage
urnin
E
D
of Mo
C
cle s
Cy
Condition 1 Condition 2
Publicly shared Appropriate context in
recognition of loss which to process loss
Figure 7.1 Pathways of loss

148 Jason Glynos
Death, national identity, and beyond
We can illustrate the complex and over-determined processes and

conditions of mourning by looking at how death has been articulated
in discourses of national identity. In particular, and relying primarily
on a stylised illustration, I show the way an ethics of mourning and its
conditions of possibility intersect with fantasy when trying to under-
stand practices organised around death from both an analytical and
critical perspective. In doing so it will become clear how such practices
are highly context-dependent, often calling for complex and difficult
judgements, and requiring that we allow theoretical categories to be
articulated with, and partly shaped by, those contexts.
Recall, for example, the earlier references by Butler and Faludi to the
way George W. Bush appeared to undercut the possibility of mourning
in the wake of 9/11, by moving quickly and decisively to mobilise shock
and raw emotion in the service of a self-righteous and vengeful mili-
tary response. No doubt it would be interesting to compare in detail a
future Iraq/Afghanistan memorial with other US war memorials, such
as the Vietnam War memorial, since they both could be said to refer
to wars whose status as legitimate is strongly contested. This mixed
picture regarding their status may certainly make the grieving process
more complicated and challenging. We may want to pay our respects
to the dead soldiers qua fellow human beings, but this desire to pay our
respects is mixed with feelings of guilt. The soldiers may have embodied
for us ideals and motivations in the name of which the war was entered
and waged, but we now find that those ideals were betrayed rather than
realised.
This line of reasoning may lead us to assume that one condition
for mourning is that death not be sullied by the betrayal of ideals in
whose name this death has come about. But this would be a mistake,
and our earlier analyses reveal why this must be so. What is at stake in
mourning is acknowledging the loss of our material identity supports
and our attachment, through them, to ideals we hold dear. Mourning
involves acknowledging our dependence on those ideals and their mate-
rial support, and it involves taking responsibility for the way that we
have been invested in a fantasmatic narrative structured around those
ideals, often unknowingly and unquestioningly. Taking responsibility,
however, implies making a judgement at some deep level – a judgement
that these ideals are not the only ones we could embrace, and that our
attachment to ideals and the enjoyment they make possible are radically
contingent – a judgement that results in a partial disinvestment in the

ideal and its material support, thereby opening up other (creative)
possibilities with which to make loss part of one’s life. This would not
necessarily result in abandoning an ideal, but it would certainly entail
adopting a different stance in relation to the ideal, one no longer char-
acterised by over-attachment.
That it is a mistake to consider the absence of betrayal as a condition of
mourning can be grasped using a stylised empirical illustration drawing
on the World War II military cemeteries found in Normandy, France:
the American Cemetery at Colleville-sur-Mer (9,387 graves + 1,557
name inscriptions of dead but missing soldiers), the British Cemetery
at Bayeux (4,648 graves + 1,801 name inscriptions of dead but missing
soldiers), and the German Cemetery at La Cambe (21,222 graves). The
three cemeteries are the largest ones representing each of the chosen
nations, out of a total of 27 Normandy military cemeteries that together
accommodate the majority of some 100,000 soldiers killed in Normandy
in the summer of 1944 (40 per cent Allied, 60 per cent German), the rest
having been repatriated (mostly American).
The fact that the Americans and British were fighting a war widely
understood today to be a just war may certainly make it easier for citi-
zens of those nations, the relatives of dead soldiers included, to ‘deal’
with military loss and ‘move on’. But this fact does not, of itself, make
it any easier or more likely that Americans and British will mourn the
loss. Nor is the possibility of mourning by Germans foreclosed by the
mere fact that they were fighting a war in the name of an ideal, or in a
manner, widely understood today to be deeply troubling. Just as Lady
Thatcher’s death does not foreclose the possibility of mourning on
account of her divisive character, and just as Princess Diana’s death does
not automatically result in mourning on account of her non-divisive
character, so too the possibility of mourning the deaths of American and
German soldiers in the aftermath of World War II is tied to the complex
and over-determined conditions of mourning.
Let us assume that the first condition of mourning isolated in Part III
is met, namely, that we have here a clear case in which an event or site
enacts for an individual or collective subject a publicly shared recognition of
loss. The cemeteries themselves, not to mention various public–official
pronouncements over the years, indicate not simply that there has been
a loss of life, but that the deceased are valued as human beings that
deserve respect. This leaves us with the task of making a judgement with
respect to the second condition, namely, whether there is an appropriate
150 Jason Glynos
context within which loss can be processed ethically and integrated creatively
into one’s individual or collective life. The open-ended, complex, and over-
determined character of making judgements in relation to this condition
is not too difficult to see, even as we might agree that such judgements
cannot be avoided.
Walking through the American and German cemeteries respectively,
for example, one is immediately struck by their contrasting scales.
Despite housing 100 per cent more graves than its American counter-
part, the scale and feel of the German cemetery is far more modest in
comparison. One might initially assume that this naturally reflects the
final, just outcome of World War II: the American cemetery marked by a
sense of just rewards, and the German cemetery marked by an in-mixing
of humble guilt and humility. However, one might also ask why this
contrast of scale and modesty should appear natural, and moreover,
what effect the differences between the two cemeteries have had, and
still have, on the process of mourning, not only along the axis of scale,
but also along other axes pertaining to landscape design and architec-
ture, for example.
For some, the scale, design, and structure of the American ceme-
tery in Normandy may carry the meaning that the war won was
a just war. For some others however this meaning may be uncon-
sciously over-determined by powerful feelings of self-righteous
and rather bombastic sentiments that fall on the side of revenge
rightfully extracted. Such feelings may certainly enable US citizens
to come to terms with loss, but they may also reinforce a sense of
over-attachment to certain ideals that can complicate the process
of mourning, and indeed may even make the appeal to vengeance
more likely when confronted by loss in the future. Seen in this light,
we could say there are specific contextual features of the American
cemetery that militate against mourning, apart from its immodest
architecture and landscape design. For example, in an effort to show
how each soldier is equal before death, differences between them
are erased (apart from a few marks of identity, such as names, date
of death, and faith), a unity reinforced by the very strong geometric
effects produced by the landscape design, including the minimalist
character of the headstones. There is an obvious prohibition against
personalising grave fixtures (of course, families can bring flowers
and other personal effects to adorn headstones, but these always
have a transient and somewhat intrusive feel). Perhaps the senti-
ment of rightful revenge and national unity is further reinforced by
references to American military might and formidable intelligence,

the destruction of the enemy, and the rather abstract declaration of
the ideals of freedom, patriotism, military valour and sacrifice, in
whose name the war was fought.
If one adds the fact that, unlike many other cemeteries, including
the British and German ones, the American cemetery has no other
nationals resting on its grounds, one might agree with Judith Butler’s
likely reaction that this is a case of a missed opportunity – a missed
opportunity to construct a different ‘we’ in relation to loss that is
rooted in human beings who share a notion of what it is to have lost
somebody (Butler, 2004, p. 20). If we accept this gloss for the purposes
of my illustration, we could say that while the American cemetery in
Normandy certainly performs a public recognition of physical loss,
thereby enacting symbolic loss as a key condition for mourning, it
does not necessarily imply that mourning will follow. Importantly, the
perceived justness of the war fought may not even make mourning
more likely. It may make mourning more difficult, even as it helps a
nation cope with loss. In my stylised description, what we have instead
is an example of how the context accompanying public recognition of
physical loss can actually be done in a way that shores up and consoli-
dates our over-attachment to the meanings, ideals and sentiments (i.e.
fantasies) the soldiers embodied for us. In other words, symbolising
physical loss can be done in a way that obscures rather than reveals the
way physical loss also represents the contingent character of identifica-
tory support.
In contrast, it can be argued that both the British and German
cemeteries appear to offer conditions that facilitate (or make more
likely) the process of mourning: from the specificity of birth date,
or military unit and formation, to personal statements inscribed on
the headstones by family members, and from the more human scale
of the landscape design and architecture to the casual availability of
visitors’ notebooks and the character of the visitor centres. The British
and German cemeteries also furnish conditions for possible identi-
fications that transcend national boundaries in a way that points
toward a common humanity: the British cemetery includes many
non-British nationals buried (the vast majority of whom are German);
and the German cemetery encourages visitors to delve much deeper
into the personal stories of German soldiers, going into some detail
about various national reconciliation projects (via twinning cities, for
example).
Figure 7.2a American Cemetery at Colleville-sur-Mer in Normandy, France
Sources (in order: left to right, top to bottom):
First row, left hand side: ‘W. Rebel/CC-BY-SA-3.0’ (Wikipedia).
First row, right hand side: American Monuments Commission (http://www.abmc.gov/
copyright.php).
Second row, left hand side: American Monuments Commission (http://www.abmc.gov/
copyright.php).
Second row, right hand side; and all the rest: Photos by Jason Glynos (2012).
Figure 7.2b British Cemetery at Bayeux in Normandy, France

Sources:
Firstrow, left hand side: 3K72ndst/CC-BY-SA-3.0 (Wikipedia).
First row, right hand side: 3K72ndst/CC-BY-SA-3.0 (Wikipedia).
The rest: Photos by Jason Glynos (2012).
154 Jason Glynos
Figure 7.2c German Cemetery at La Cambe in Normandy, France

Sources:
First row, left hand side: Bjarki Sigursveinsson, 2003 (Wikipedia).
First row, right hand side: Photo by Jason Glynos (2012).
Second row, left hand side: Photo by Jason Glynos (2012).
Second row, right hand side: David Zelden/ CC-BY-SA-3.0 (Wikipedia).
Our analysis suggests that the concept and process of mourning offers us
a way to evaluate how we cope with death and loss in its different regis-
ters. It opens up a field of inquiry whose objects of study are practices in
which death has been ethically and creatively integrated into people’s
lives. Mourning is not understood here as a model or Weberian ideal type,
but as a nodal point that gathers together a constellation of concepts,
fantasy included, and that provokes both a search for the sorts of condi-
tions under which mourning can be performed, and an effort to map out
the plurality of mourning pathways that unfold under those conditions.
However, we can also begin to interrogate critically those practices
that block mourning either because they do not enact (or militate
against) a publicly shared recognition of loss or because they do not
furnish us with an appropriate context within which to mourn this loss.
The point of course is not to impose a monolithic image of mourning

given a particular death-event (cf. Wortman and Silver,1989), but to
open up a space within which to debate the conditions that make
possible multiple pathways of mourning (since people can mourn in a
wide range of ethically creative ways). Nevertheless, we can still claim,
following Freud, that the failure of mourning results in individual and
collective suffering, whether through introjection (in melancholia, for
example) or projection (in various forms of ressentiment, for example).
And this failure gives us a critical foothold because it enables us to
identify and contest norms that militate against mourning. If the
conditions are not right, subjects cannot properly confront radical
contingency and the anxiety loss provokes: undergoing ‘controlled
moments of fantasmatic destabilisation’ demands an appropriate
context, including an appropriate support network. We have seen
this in relation to deaths in war and associated discourses of national
identity. But we can see it also in relation to a whole range of other
practices.
Some medical practices, for example, may include social norms that
make it difficult for couples, and women in particular, to transform
their experience of a miscarriage into a shared public recognition of
loss. Other contextual norms may also militate against mourning the
loss of a foetus. Such norms may thus demand to be publicly contested.
Such critical engagement can be understood to unfold along the
normative plane since it is about contesting norms of a practice that
undermine the value and role of mourning in the lives of individuals
and communities. Such critical engagement can be understood to
unfold along a hegemonic plane too since it is about identifying and
constructing, through a process of counter-hegemonic struggle, the
agents and interests affected by the prospect of transforming those
norms. But our critical engagement can also unfold along the ideo-
logical plane. Here, the task is to discern the fantasmatic force keeping
problematic norms in place, as well as the fantasmatic force that can
accompany transformative moves. What individual and collective
(ideological) complicities are at stake in remaining invested in these
norms that, from a normative and counter-hegemonic point of view,
are worth contesting?
The significance of this ‘psychoanalytically informed discourse-
theoretical’ approach is that for every practice organised around death
we can ask after the conditions that admit the possibility of mourning
as one way to interrogate critically such practices. Such a vantage point
156 Jason Glynos
focuses attention on norms that tend to block mourning or, on the

contrary, facilitate it. I have also argued that mobilising the category
of fantasy clarifies the way conscious, preconscious and unconscious
aspects help us better to grasp how subjects process loss, as well as
the normative, hegemonic, and ideological implications of associ-
ated practices and policy reforms. Clearly, broader cultural and media
representations of the body, death, and dying are central to grasping
the significance associated with practices organised around death (Van
Brussel and Carpentier, 2012; see, also, other parts of this volume). But
so are scientific developments. Social media technologies, for example,
have given rise to the phenomenon of ‘automated mourning’ that can
have profound implications for our capacity to mourn the loss of friends
and relatives (Gibson, 2007). Another remarkable feature of twenty-first
century life is that, through a range of scientific developments, death
has moved decisively into the province of old age even while the timing
of death continues to be pushed further into the distance; and yet
cultural representations of older people as well as old age living and
death remain outdated and rather pathological (Johnson, 2005; Van
Brussel, 2012). Key questions emerge in the wake of such an investiga-
tion; for example, what norms and practices reinforce and reproduce
an experience of blocked mourning, thus inviting us to interrogate and
contest them? Such questions push us into a field of inquiry centred
around the hegemony and ideology of certain conceptions of death
(and life), as well as normatively-inflected mobilisations that seek to
‘politicize death’.
In summarising Part IV, we could say that the mourning process entails
that we overcome a number of difficult hurdles when confronting loss
in its different registers. It involves separating out the physical loss from
what that physical loss represents for us at preconscious and uncon-
scious levels in our fantasy life. So, while mourning may require, as an
important precondition, some form of public registration of physical
loss, this recognition is not sufficient to ensure mourning takes place.
A publicly shared recognition of loss only gets us so far. What is crucial
above and beyond the formal and public registration of such physical
loss is an appropriate context in which loss can be processed and inte-
grated into life. Only certain contextual features and modalities of
public recognition can provide the conditions to enable registration not
merely of physical loss, but of what that physical loss can represent and
enact for us at a psychic level: the loss of identificatory support, as well
as loss of affective investment. This forces a confrontation with what the
physical loss means to us, whether other embodiments of such meaning
are possible, whether other meanings and ideals are possible and desir-
able, or some combination of the above.
Conclusion
A key thesis of the chapter is that mourning and its conditions of

possibility furnish us with an ethical and normative frame that can
orient efforts to explain critically practices organised around death
and loss. Mourning’s critical and creative potential was emphasised
by Freud long ago and by many inspired by him since (Freud, 1915,
1916, 1917, 1927, 1930; Drassinower, 2003; Von Unwerth, 2006, 2010;
Eng and Kazanjian, 2003; Butler, 2004). A psychoanalytically informed
discourse-theoretical approach builds on this insight, amplifying the
role fantasy can play in our understanding of the mourning process,
and operationalising it for critical empirical research focused on prac-
tices organised around death. In this view, mourning offers us an ethical
vision whose non-realisation opens up a set of normative, hegemonic,
and ideological questions about what, how, and why particular norms
block the mourning process.
Two key mourning conditions were sketched out, demanding: (1)
an event or site that enacts for an individual or collective subject a
publicly shared recognition of loss; and (2) an appropriate context
within which loss can be processed ethically and creatively inte-
grated into one’s individual and collective life. Practices organised
around death and loss can be understood and critically engaged
with reference to these conditions. Appealing to a conceptual grid
made up of discourse, fantasy, and mourning suggests that prac-
tices associated with the social construction of death are not norma-
tively or ethically neutral. Such practices, which shape our response
to death and loss, become problematic when a subject’s access to
mourning is blocked, and when norms sustain this blockage. An
ideological critique that takes its bearings from the concept of
mourning – or the ‘crossing of fantasy’ – clearly regards these norms
as worth contesting and thus politicising. Such politicisation is not
easy of course because norms tend to serve fantasmatically mediated
interests, and only careful study can construct, on a case-by-case
basis, the relative weight attaching to the psychic and non-psychic
dimensions of these interests. This may help make more visible how
political logics are (or can be) mobilised in a normative, hegemonic,
and ideological struggle to challenge particular norms or, indeed, to
defend them.
158 Jason Glynos
Acknowledgements
For detailed and very helpful feedback on this chapter, I thank the editors
Nico Carpentier and Leen Van Brussel. I am much indebted too to Savvas
Voutyras and Karen West, as well as members of the Essex psycho-so-
cial studies group, comprising Matt ffytche, Karl Figlio, Roderick Main,
Bethany Morgan-Brett, Mike Roper, and Ewen Speed. Thanks too to
Shu Shimizu for technical assistance. I also benefited enormously from
discussions with people involved in workshops held at Umea University
and the University of East Anglia where I presented elements of this
chapter, including Alan Finlayson, Jens Lindberg, Marina Prentoulis,
Karen Schaller, Angelika Sjöstedt-Landen, and Lyndsey Stonebridge.
Note
1. Other perspectives are instantiated by, for example, Drassinower (2003);
Howarth (2007); Eng and Kazanjian (2003); Kaufman and Morgan (2005);
Brooks-Gordon et al. (2007); Jalland (2010); Bahun (2013); Clark (2002); Noys
(2005); Kubler-Ross (2009[1960]).
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8
Ethics, Killing and Dying: The
Discursive Struggle between Ethics
of War and Peace Models in the
Cypriot Independence War of
1955–1959
Nico Carpentier
Introduction
This chapter aims to deploy a discourse–theoretical framework to better

understand the relationship between ethics and death, more particu-
larly in the case of war. War, or armed conflict, is one of the areas of
the social where the encounter between death and the ethical is highly
complex, because of the strong ethical claims that actors engaged in
warfare make in order to legitimate their violent practices. This chapter
focuses on one particular area of this encounter between death and the
ethical in wartime, and that is the ethicality of killing (and dying) itself.
In order to do so, three models will be developed; the legitimisation
ethics of war model, the celebratory ethics of war model and the ethics
of peace model.
Grounding these models in Laclau and Mouffe’s (1985) discourse
theory, and especially in Laclau’s (2000a, 2002) later reflections on the
ethical, allows emphasising their constructed nature and the dynamical
interplay between rigidity and contingency this provokes. To use the
language of discourse theory, this chapter defines the ethical as an empty
signifier, claimed by a diversity of competing normative frameworks. In
other words, the ethical is not a given, but a social construction and
object of political struggle. This difficult intellectual operation – of brack-
eting the ethical – allows highlighting the struggle that warring parties
161
162 Nico Carpentier
are engaged in, when they are all, each in their own way, claiming access
to the ethical.
In the second part of the chapter, the workings of these models (and
their struggle) are analysed within one particular conflict, which is the
Cypriot independence war of 1955–1959. This guerrilla war against the
British coloniser resulted in the independence of the island in 1960, but
also laid the foundations for a series of later inter-communal conflicts
between Greek and Turkish Cypriots. Through the analysis of propa-
ganda material, produced during (and right after) this conflict, in combi-
nation with the analysis of two memorial sites, the articulation of, and
the struggle between, the ethics of war and peace models can be traced.
But before entering into the particularity of the case study, it is neces-
sary to briefly introduce the theoretical framework that is used in this
chapter: discourse theory.
A short introduction to discourse theory
Before briefly entering the world of Laclau and Mouffe’s discourse–

theoretical work, it should be stressed that Laclau and Mouffe do not
take a mere idealist position. Their starting point is indeed that all social
phenomena and objects obtain their meaning(s) through discourse, which
is defined as ‘a structure in which meaning is constantly negotiated and
constructed’ (Laclau, 1988, p. 254). But they have no ambition to equate
the discursive and the real; nor do they wish to ignore the existence of
our realities. What Laclau and Mouffe do posit in their – what they call –
radical–materialist position is that the discursive component of reality
is a necessary condition for accessing reality. Moreover, they see ‘the’
social reality as contingent and undecidable, in which in other words
the present socio-political constellation is not defined as a necessity,
but as the result of the complex interaction between subjects, subject
positions, discourses and materialities. Despite this disclaimer, it should
also be mentioned that the main thrust of their theoretical framework
and analysis is aimed at discursive processes (and less at the material
world).
Even if Laclau and Mouffe’s discourse theory views discourses not as
stable and fixed, discourses still have to be partially fixed, as the abun-
dance of meaning would otherwise make any meaning impossible: ‘a
discourse incapable of generating any fixity of meaning is the discourse
of the psychotic’ (Laclau and Mouffe, 1985, p. 112). This structure is
first of all generated through the logic of articulation, which is defined
as ‘any practice establishing a relation among elements such that their
Ethics, Killing and Dying 163
identity is modified as a result of the articulatory practice’ (Laclau and

Mouffe, 1985, p. 105). Further fixations are generated by so-called nodal
points, a concept analogous with Lacan’s ‘points de capiton’ concept.
These nodal points are privileged elements within a discourse that
generate discursive coherence and fix the meaning of a chain of signi-
fiers (Laclau and Mouffe, 1985, p. 112). Closely related is the concept
that will turn out to be very relevant in this chapter, the empty signi-
fier (Laclau, 1996), which refers to a signifier, most often a nodal point,
whose meaning is emptied so that it can be filled by any particular
meaning and thus guarantee discursive stability. Laclau (1996, p. 39)
describes empty signifiers as a signifiers that have ‘emptied themselves
of their attachments to particular signifiers and assume the role of the
pure being of the system – or, rather the system as pure Being – that such
a signification is possible’. It is exactly through this emptiness that the
representational function can be played and discursive coherence can be
achieved. But again, it should be stressed that articulations (and nodal
points) are not necessarily stable, as disarticulations and re-articulations
can always occur, transforming the entire discourse in the process, intro-
ducing contingency again.
Discourses also engage in struggles with each other, and here discur-
sive stability is generated through the workings of hegemony. Laclau
and Mouffe used the concept of hegemony, which they borrowed from
Gramsci, to refer to a situation where a discourse becomes dominant,
and manages to (temporarily) move beyond contestation and that form
a horizon beyond which it is difficult to move. Howarth (1998, p. 279)
described Laclau and Mouffe’s interpretation of the concept as follows:
‘hegemonic practices are an exemplary form of political articulation
which involves linking together different identities into a common
project’. This does not imply that counter-hegemonic articulations
are impossible and that hegemony is total and ever-lasting. As Mouffe
(2005, p. 18) writes: ‘Every hegemonic order is susceptible of being
challenged by counterhegemonic practices, i.e., practices which will
attempt to disarticulate the existing order so as to install other forms of
hegemony.’ Here too, despite the strong rigidities of some hegemonies,
we see that contingency, through the logic of the discursive struggle that
can dethrone hegemonic discourses, remains possible.
Discourse theory and ethics
From a discourse-theoretical perspective, like any societal domain that

produces particular meanings, ethics can be approached as a discursive
164 Nico Carpentier
field where a variety of discourses aim to normatively evaluate human

practices. In his work from around 2000, Laclau has produced a series
of reflections on ethics, which are strongly grounded in the distinction
between the normative and the ethical. This model is based on the prin-
ciple of the discursive struggle, where different discourses compete to
obtain dominance (or hegemony). Many mechanisms can be used to
support a process of hegemonisation: Mouffe (2005, p. 30) refers to the
usage of ‘essentialist forms of identification or non-negotiable moral
values’, but also the mechanism of universalisation can be mentioned
here. From this perspective, essentialisation, moralisation and univer-
salisation allow discourses to achieve dominance by establishing them-
selves as an essence, as good or as universal. They are locations that
discourses aim to occupy in order to strengthen its hegemonic claims,
which also has consequences for how the concepts of the essence, the
ethical (or moral) and the universal are perceived in discourse theory.
To start with the universal: for Laclau, the universal is an empty signi-
fier (Laclau, 2000a, p. 34, 2000b, p. 304), which does not imply that
the universal does not exist. It does exist, but it is always constructed
through a series of particularities. To use Laclau’s (1996, p. 57) words:
‘Now, this universality needs – for its expression – to be incarnated in
something essentially incommensurable with it: a particularity.’ This
implies that the very emptiness of the signifier of the universal always
requires a particular, so that this particular can be universalised in order
to (attempt to) saturate the universal. The universal thus cannot exist
without the particular. At the same time, the relationship between the
universal and the particular is unstable and undecidable, since the way
the universal and the particular relate to each other is ‘in the strict sense
of the term, a hegemonic operation’ and thus necessarily depends on a
specific context (Laclau, 1996, pp. 14–15), which is always susceptible
to change.
Laclau uses the same line of thinking towards the ethical. In the
following long citation, he defines the ethical (just like the universal) as
an empty signifier, which is filled with particulars, creating a constitu-
tive but unbridgeable gap between the universal–ethical and particular
normative frameworks.
For me, the notion of the ethical is linked with the notion of an
empty signifier, whereby an empty signifier is that option to which
no content would correspond. [ ... ] [The ethical experience] is related
to the experience of the unconditional in an entirely conditioned
universe. And this experience of the unconditional is the kernel
of any notion of ethics. If we say that there is a radical distinction

between the ‘is’ and the ‘ought’, this distance between the two is
precisely what constitutes the space of ethics. But this distance is
experienced through a certain breech, or gap, which cannot be ulti-
mately filled. Because of this the transition from the ethical to the
normative is going to have the characteristic of a radical investment.
(Laclau 2002)
This has several implications: first of all, in his thinking, Laclau creates a
sharp distinction between normative orders (which I would also like to
call here particular ethical discourses) and the ethical. As Laclau (2000a,
p. 81) pointed out: ‘There is an ethical investment in particular norma-
tive orders, but no normative order which is, in and for itself, ethical.’
The ethical is different from these normative orders, as it is a privileged
(hegemonised) normative order: ‘The ethical dimension is what persists
in a chain of successive events in so far as the latter are seen as something
which is split from their own particularity from the very beginning’
(Laclau, 2000a, p. 84 – emphasis in original). Although these normative
orders and the ethical are different, they obviously interact. More specifi-
cally, there is ‘the limitation of the ethical by the normative and the
subversion of the normative by the ethical’ (Laclau, 2000a, p. 83).
A second implication is that the ethical thus has no given (pre-de-
fined) content, but that the ethical is always defined through the hege-
monisation or universalisation of particular normative frameworks. This
is where Laclau (2000a, p. 82) finds himself in opposition to authors
such as Habermas and Rawls. Laclau’s position is described here by
Friman (2010, p. 11) who says that Laclau ‘proposes an ethics that itself
is free of normative operationalizations’. The ‘filling’ of the ethical is for
Laclau a political process, requiring the hegemonisation of these partic-
ular normative frameworks. Laclau takes this argument one step further,
as he turns the argument around and argues that without the distinc-
tion between the ethical and normative orders, between the universal
and the particular, between the ontic and the ontological, politics (and
hegemony) would not be possible, as everything would be completely
fixed. Laclau (2000a, p. 84 – emphasis in original) formulates this as
follows: ‘Only [ ... ] if the distance between the ontic and the ontological,
between investing (the ethical) and in which one invests (the normative
order) is never filled – can we have hegemony and politics [ ... ].’
Before zooming further in on one discursive (sub-)field, namely ethics
and death, it is important to emphasise that this chapter will follow the
above-outlined discourse-theoretical framework, most certainly in its
166 Nico Carpentier
ontological positioning but also (mostly) in its vocabulary. This implies

that the key distinction between the ethical and normative frameworks
will be used, even if (at first) it may come across as unusual. The only
addition that is made here is that also the concept of ethics will be used
(for example when talking about the ethics of war model) to clarify that
the normative frameworks being addressed are located in the discursive
field of ethics (and not elsewhere), and that these normative frameworks
have claims to occupying the discursive position of the ethical (but not
always succeed).
Ethics and death
One of the (numerous) areas where ethics are deployed, and struggles
between normative frameworks are waged, is in relation to death. This
is a broad field, which still covers a wide range of death-related issues
that deal with the ethical. First, there is the area of prevention, which is
concerned with avoiding (or postponing) death, for instance, through
health promotion and accident prevention. Continuation deals with
the ethical issues concerning the prolongation of life, either artificially
(e.g. freezing) or ideologically (e.g. through the beliefs in an after-life).
Thirdly, optimalisation deals with the ethical issues related to the good
death (something that could be extended to the good life). Fourthly,
there is the area of representation, which refers to the ethical issues
concerning the portrayal of death and the dying. But arguably the
largest sub-field is the area of intervention, where many ethical ques-
tions about the permissibility and/or necessity of human intervention
circulate. The sub-field of intervention contains ethical issues related
to individual actions (for example suicide and murder), issues that are
related to particular societal fields (for example euthanasia and abor-
tion within the medical field), and issues mostly related to the state (for
example capital punishment, genocide and war).
This chapter is firmly embedded in the last area, intervention, in its
focus on the discursive struggles over the normative articulation of killing
in a particular armed conflict. Obviously, war is one of the human activi-
ties where death is inflicted, often at a large scale, which produces a wide
variety of ethical issues. But from a discourse-theoretical perspective we
analyse war as a location where competing models of ethics, that aim
to provide meaning to the killing of human beings, circulate. Moreover,
we can also see how over time the normative articulations of killing
change. As a starting point, I want to propose three core models of ethics
in relation to killing in armed conflict. The first (which will be discussed
last) is a normative model of peace, which articulates war-related kill-

ings as unethical. The two other models are ethics of war models, which
nevertheless create different relations with the ethical: The celebratory
ethics of war model articulates killing as ethical, while the legitimisation
ethics of war model articulates the ethical issue of killing as secondary
(without rejecting the normative framework that speaks against killing
and articulates it as unethical).
In a celebratory ethics of war model, killing may become defined as
an ethical act it itself. Thomson (1993, p. 10) links this normative model
to militaristic and imperial societies, when he writes that there are ‘[ ... ]
numerous examples of imperial moralities of this kind, in which the
greatest sins are treason or cowardice, the greatest good to kill or to die
for the motherland’. But arguably, this normative model is not restricted
to these kinds of societies; in Christian thought, for instance, there is –
or better, has been – a tradition of accepting the killing of sinners, as is
evidenced by Thomas Aquinas (2013, p. 1461), who writes in Question
64, Of Murder: ‘[ ... ] although it be evil in itself to kill a man so long as
he preserve his dignity, yet it may be good to kill a man who has sinned,
even as it is to kill a beast. For a bad man is worse than a beast, and is
more harmful [ ... ].’ The definition of killing as ethical opens up the
problematic (but yet rarely discussed) issue of enjoyment. Traces of this
issue, often linked to sadism and bloodlust, can sometimes be found in
historical evidence about the Holocaust (Ingrao, 2013) and the French
revolution (Le Bon, 1980), but also in literature (Breu, 2005, p. 69).
Stronger (and less taboo-loaded) formulations of the enjoyment triggered
by killing can be found when the killing concerns animals, for instance,
during the hunt, or as exemplified by Hemingway’s (2002, p. 184) cita-
tion, the bullfight: ‘A great killer must love to kill. [ ... ] Killing cleanly
and in a way that gives you aesthetic pleasure and pride has always been
one of the greatest enjoyments of a part of the human race.’
In the model where killing is seen as the exception to an ethical norm
that disallows for killing, the logics of the exception protect the norm.
Killing might be deemed legitimate, just or necessary, but this does not
render the killing in itself ethical. In this model the legitimisations for
the act(s) of killing supersede the normative framework that opposes
killing, where the infliction of death upon the other is pragmatically seen
as a lesser evil. The legitimisations of (larger-scale) killing are very much
embedded in the century-old tradition of just war theories, which has
the distinction between jus ad bellum and jus in bello as one of its main
structuring elements. Jus ad bellum refers to the principles that govern
the resort to war, while jus in bello refers to the principles governing the
168 Nico Carpentier
conduct of war itself (for an overview, see Childress (1978)). Again, it is

important to stress that both structuring elements regulate the ethics of
killing, without articulating killing as ethical.
The third model, embedded within an ethics of peace, is (absolute) paci-
fism, where killing is deemed unethical, and cannot be made secondary
to the legitimisations of war (or other legitimisations). As Atack (2012,
p. 158) summarises it, pacifism: ‘objects to the institutionalised or
organised use of violence, in the form of war and armed conflict, for
ethical reasons. It involves the refusal to participate in political violence,
because of the loss of human life and the scale of destruction it entails.’
Some of the pacifist normative positions are closely related to religion,
as Tolstoy’s (2010, p. 71) absolutist rejection of political violence (of any
kind) shows: ‘A Christian, whose doctrine enjoins upon him humility,
non-resistance to evil, love to all (even to the most malicious), cannot be
a soldier; that is, he cannot join a class of men whose business is to kill
their fellow-men.’ Others, like Russell (1915), take a more consequen-
tialist (and much less absolute pacifist) position, pointing to the many
evils of wars, including the following: ‘Of all the evils of war the greatest,
in my opinion, is the purely spiritual evil: the hatred, the injustice, the
repudiation of truth, the artificial conflict [ ... ].’
As is emphasised in a discourse-theoretical approach, these norma-
tive models are intrinsically contingent, and different actors try to stabi-
lise and hegemonise particular (versions of) these normative models,
claiming access to the empty signifier of the ethical. This implies that
the different normative models also co-exist within one particular
locality, as Russell’s (1915) above-cited text, entitled The Ethics of War
and published in the second year of World War I, illustrates. In this
context, it is safe to say that Russell’s argumentation was a counter-he-
gemonic position in the UK (and in other countries). At the same time,
many other (British) actors would rally to defend the normative articula-
tions of the war model, protecting its hegemony. In Russell’s case, this,
for instance, meant that in 1916 he was taken to court for a leaflet he
had written against conscription, fined £100 and lost his lectureship. In
1918, he was sentenced to six months of imprisonment for an article
published in The Tribune (Monk, 2013).
The contingency of the normative articulations of war (and peace)
also becomes evident because of the deep antagonistic relationship
between the warring parties. As argued elsewhere (Carpentier, 2007),
actors involved in armed conflict also enter in a discursive struggle
with each other, producing discourses on the self and the enemy. Each
warring party’s almost impossible objective is to achieve the hegemony
of their discursive normative frameworks, at the expense of the enemy’s.

Following Galtung and his colleagues (Galtung and Vincent, 1992;
Galtung, 1998; Galtung 2000; McGoldrick and Lynch, 2000; Galtung
et al., 2001), this earlier study argued that these discourses on the self
and the enemy are based on a series of elementary dichotomies: good/
evil, just/unjust, innocent/guilty, rational/irrational, civilised/barbaric,
organised/chaotic, superior to technology/part of technology, human/
animal–machine1, united/fragmented, heroic/cowardice and deter-
mined/insecure. A second layer of dichotomies structures the mean-
ings attributed to the violent practices of both warring parties, which
included: necessary/unnecessary, last resort/provocative, limited effects/
major effects, focused/indiscriminate, purposeful/senseless, unavoid-
able/avoidable, legitimate/illegitimate, legal/criminal, sophisticated/
brutal and professional/undisciplined.
Building on this earlier work, two points can be made. First, the above-
mentioned dichotomies have clear ethical dimensions, which cause the
discursive struggle for hegemony also to include these ethical dimen-
sions. Both sides claim access to the ethical, to be civilised, and to fight
a good and just war, attributing responsibility for the conflict to the
enemy. The violent practices of both sides are focused, well-considered,
purposeful, unavoidable and necessary. This brings me to the second
point, which is that the identity constructions of the self and the enemy,
including their ethical components, are mutually dependant, as the
construction of the enemy is accompanied by the construction of the
identity of the self, clearly in an antagonistic relationship to the enemy’s
identity. In this process not only the radical otherness of the enemy
is emphasised, but both identities simultaneously require each other’s
presence to be articulated. Ironically, this implies that the structure of
the discourses on the enemy and the self become very similar, as they
both become trapped in the logic of antagonism.
A short note on the Cypriot independence struggle

(1955–1959)
The case study in this chapter focuses on Cyprus2, which is one of the
European countries characterised by a long-lasting conflict. Given the
complexity of this conflict, a brief introduction into the context of this
conflict is unavoidable. The majority of the population on the island
is Greek Orthodox (78 per cent), with 18 per cent of Muslims, and an
overall 4 per cent of Maronites, Armenian Apostolics, Catholics, etc.
(Vassiliadou, 2007, p. 201) The official languages are Greek and Turkish.
170 Nico Carpentier
In 2011 the population was estimated at 840,407 in the south (Statistical

Service of the Republic of Cyprus 2012) and at 294,906 (Αύξηση
πληθυσµού στα κατεχόµενα 2011) in the north. The island has been
geographically and ethnically divided since 1974 when Turkey invaded
the north and occupied 38 per cent of the island, after decades of inter-
communal tensions and violence between the two major communities,
Greek Cypriots and Turkish Cypriots. For this chapter, we will go back
to an earlier stage, which is the Cypriot independence (guerrilla) war of
1955–1959 against the UK.
Before Cyprus became a British colony, it was part of the Ottoman
Empire, and had been since 1571 – a result of the Turkish–Venetian War.
Already during Ottoman rule, Greek Cypriots had expressed the wish
for enosis (or union with Greece), and this wish was strengthened by
the Greek independence process (1821–1832). When the power of the
Ottoman Empire receded, the island came under the control of the UK,
first as a protectorate (between 1878 and 1914). At the start of World
War I, the island was then annexed by the UK. After World War I, the
Greek expansionist ideology (the ‘Megali idea’), which had led to a
substantial increase in Greek territory, became structurally frustrated
during the Greek–Turkish war of 1919–1922. This so-called ‘Asia Minor
Catastrophe’ (from a Greek perspective) ended the millennia-old Greek
presence in Asia Minor, but on Cyprus, the desire for enosis remained,
leading, for instance, to riots in October 1931 (Faustmann, 2008,
p. 47–50; Richmond, 1998, p. 70).
After World War II, the pressure increased further, and in the mid-1950s,
EOKA (Ethniki Organosis Kyprion Agoniston), led by the right-wing
Georgios Grivas and supported by Archbishop Makarios III, launched
a violent campaign against British rule, with the combined objectives
of self-determination and enosis. EOKA officially announced the start of
(what they called) the ‘liberation struggle’ on 1 April 1955 with a series
of bomb attacks. With a small group of between 250 and 300 guerrilleros,
EOKA’s leader Grivas had no intention to tackle the British head-on, but
relied on sabotage and small-scale killings, combined with propaganda
and strengthened by the passive resistance of the Greek Cypriot popula-
tion. The EOKA not only targeted the British, but also Greek Cypriots
and the Cypriot police, which consisted to a relatively high degree of
Turkish Cypriots (Faustmann, 2008, p. 52–53; Sant Cassia, 2005, p. 19).
Especially after the anti-Greek pogrom in Istanbul, in September 1955,
Turkish Cypriots became more often targeted, which led to the establish-
ment of Volkan, later integrated into the Turkish Resistance Organisation
(TMT), which was established in early 1958. TMT in turn targeted Greek
Cypriots (but also leftist Turkish Cypriots, such as trade unionist Derviş
Ali Kavazoğlu3), and demanded partition (or taksim) (Cockburn, 2004,
pp. 47–48).
In his ‘General Plan for Insurrectionary Action’, Grivas (1964a, p. 5)
strongly emphasised the need ‘to draw the attention of international
public opinion, especially among the allies of Greece’. But EOKA’s polit-
ical violence also had domestic objectives. With their campaign, EOKA
raised the cost of the British presence on the island, as it ‘took a steady
toll upon the British military and police on the island. Casualties came
in ones and twos, and there were no real battles to report’ (Corum, 2008,
p. 108). The British field marshal John Harding, who became governor
of Cyprus on 3 October 1955, chose for a military strategy, resulting in
a situation described by Grivas (1964a, p. 46) as follows: ‘Instead, the
British flooded Cyprus with troops, so that one met a soldier at every step,
with the only result that they offered plenty of targets and so sustained
casualties.’ Grivas also used what Carruthers (1994, p. 228) calls enforce-
ment terror, where EOKA attacked Greek (and Turkish) Cypriots that
were seen as ideological opponents and/or collaborators with the British.
Furthermore, EOKA provoked the British into severe counter-measures,
such as declaring a state of emergency, outlawing organisations, closing
down newspapers, issuing collective punishments, opening up of deten-
tion camps, expanding the number of crimes punishable by death and
actually implementing the death penalty. In March 1956, the British
also shipped off Archbishop Makarios to exile on the Seychelles islands.
Moreover, the British increased their reliance on Turkish Cypriots to
man the police force, which further triggered inter-communal tensions
and violence. The combination of all this, as Corum (2008, p. 108)
writes, resulted in ‘further alienating the Greek Cypriot population’ and
forced ‘the whole Greek [Cypriot] community to support EOKA simply
to provide some protection from the government forces and the Turk[ish
Cypriot]s’, despite the fact that ‘many Greek [Cypriot]s had been reluc-
tant to support EOKA’s campaign of violence’ (Corum, 2008, p. 111).
Important in the context of this chapter is to stress the violent nature
of the EOKA campaign, where the use of attrition was legitimated by
EOKA’s objectives: ‘Our purpose is to win a moral victory through a
process of attrition, by harassing, confusing and finally exasperating
the enemy forces, with the object of achieving our main aim [ ... ].’
(Grivas, 1964a, p. ii – my emphasis) In the cities, EOKA used assas-
sination squads, who shot British soldiers, police officers and (other)
‘traitors’ in broad daylight. Corum (2008, p. 108), for instance, writes
that that: ‘The EOKA hit squads were especially effective in Nicosia. In
172 Nico Carpentier
almost all cases, the killers escaped into the crowd and found refuge
in one of EOKA’s safe houses. On more than one occasion, the EOKA
killer squads were hidden in the houses of pro-EOKA Greek Cypriot
policemen.’ There are good indications to support that the British
use of violence was equally structural. After the death of the wife of a
British soldier, Catherine Cutliffe, who was shot in the back in front of
her daughter when they were walking in Hermes Street, in Famagusta,
British retaliations were severe. Hundreds of Cypriots were detained and
three Cypriots died. One of them, Andreas Louca, ‘a 17-year-old Greek
Cypriot, was fatally wounded when a soldier fractured his skull’, as was
described in recently released documents, that were published in the
British newspaper The Guardian (Norton-Taylor, 2012). The Guardian
journalist Ian Cobain (2012) wrote that the ‘International Committee of
the Red Cross documented hundreds of cases of torture during the 1950s
Eoka insurgency.’ In the aftermath of the 2012 British High Court Mau
Mau ruling4, reports of the torture of EOKA fighters resurfaced, as they
expressed their willingness (for example in The Cyprus Mail) to start legal
procedures against the UK (Pantelides, 2013). Finally, there is also earlier
evidence, provided, for instance, by Labour Party MP Fenner Brockway
in a House of Commons Sitting of 9 July 1957, where he reported that
he saw Cypriot prisoners in the British Wormwood Scrubs prison ‘whose
arms had been broken, who had swellings on their bodies the size of
cricket balls, and scars on their necks’. In the Commons Sitting of 15
July 1957, Labour MP Jennie Lee read out detailed statements made by
Cypriot prisoners describing their torture in Cyprus, before they were
transferred to Wormwood Scrubs.5
The EOKA strategy turned out to be effective, and on 9 March 1959
EOKA declared that it had reached its objectives. After negotiations
between Greece, Turkey, the UK and Cypriot community representa-
tives, resulting in the Zürich and London Agreements, Cyprus became
proclaimed an independent state on 16 August 1960, with its independ-
ence guaranteed by Greece, Turkey and the UK. The UK retained control
over two bases on Cyprus, namely the Dhekelia and Akrotiri Sovereign
Base Areas. The year after, in 1961, Cyprus joined the Commonwealth.
Representing the ethical dimension of death in the

rhetoric of the 1950s
This context of violence allows for an analysis of the propaganda mate-

rial that was produced in this period (or right after). One valuable source
is the translated collection of EOKA and British leaflets, collected by
Sergeant Major Herbert A. Friedman6. The Cypriot newspaper The Cyprus

Mail was searched for full versions and summaries of, or references to,
EOKA and British leaflets, for the period between 1 April 1955 and 10
March 1959. Finally, two books written by Georgeos Grivas (1964a,
1964b) were also included in the analysis. In the context of the anal-
ysis, it is important to emphasise that the ethical constructions of both
warring parties were analysed. Methodologically, discourse-theoretical
analysis (or DTA) was used to guide the actual analysis of the material
(see Carpentier and De Cleen, 2007).
In the analysed material, the ethics of war is dominantly present,
articulating killing as legitimate. The goodness of the cause (which
legitimates the killing) also becomes articulated through the willing-
ness to sacrifice one’s own life. The EOKA oath exemplifies this: ‘I swear
[ ... ] to dedicate with all my strength and even my life to the success
of the holy aims of the Organisation’ (Byford-Jones, 1959, p. 56 – my
emphasis). This cause is articulated as being of such importance that the
options become extremely limited: ‘to face the tyrant with the finger
always on the trigger and with the firm decision either to destroy him
or to die’ (EOKA leaflet about Kyriakos Matsis – my emphasis). In this
same leaflet, the ethical nature of the EOKA fighters (and consequently
of their struggle) is emphasised: ‘It cries out to the civilised world of the
ideals, self-sacrifice, and ethical affordances that the fighters for Cypriot
Freedom are endowed with’ (my emphasis). The heroic and honourable
nature of the fighters and the struggle, supported by references to the
Greek independence war of 1821 and to the ancient warriors of Sparta
and Athens, is also protected by threats launched at (potential) traitors:
‘If I disobey my oath, I shall be worthy of every punishment as a traitor
and may eternal contempt cover me’ (EOKA Youth Organisation oath –
Byford-Jones (1959, p. 57)).
The legitimisation ethics of war model also affects how the killing of
the enemy is articulated. One element is that the violence is necessary
and unavoidable to achieve the objective, while the responsibility lies
with the enemy. A second element is the evilness of the enemy, where
both sides are referring to the criminal acts performed by the inhu-
mane enemy. One British propaganda poster for instance shows a dead
(Cypriot) man, in a pool of blood, combined with the question ‘Which
was the crime of this man?’ Thirdly, selectivity is an important argu-
ment to protect the legitimation ethics of war model. The violence is
not indiscriminate but well-considered. This is especially important for
EOKA, given the ‘sneaky’ nature of guerrilla warfare. Grivas takes quite
some space to explain and legitimate their tactics (of the ‘surprise attack
174 Nico Carpentier
from behind’ (Grivas, 1964b, p. 43)) in his Memoirs, as these tactics form
a discursive threat for the articulation of his fighters as heroic. Again,
the objective becomes the ultimate legitimisation: ‘To shoot down your
enemies in the street may be unprecedented, but I was looking for results,
not precedents’ (Grivas, 1964b, p. 43, see also Grivas, 1964a, p. 68).
The same fragment from his Memoirs also shows the care that is taken
to show the unavoidability of the killing, together with the limited
nature of the killing by emphasising the ‘few hundred [that] fell in four
years’ (Grivas, 1964b, p. 43 – my emphasis). This is a first indication of
the absence of the celebration of killing. A more clear articulation of
the absence of celebration is the EOKA leaflet from 1958 that calls for a
political solution and refers to the armed struggle as an ‘anomaly’:
We have declared that we are struggling for our freedom and on the
altar of freedom any price is small. Our decision is to earn it [our
freedom]. You have forced on us this armed struggle by refusing to use
political means. If you want the struggle to cease, follow, even belat-
edly, the straight way of honest and sincere political means. Then
also the anomaly will end. (EOKA leaflet distributed in Nicosia on 17
October 1958 – cursory emphasis mine, underlining in original.)
Also the British use similar anti-celebratory articulations and express

their regret over the bloodshed. In the British anti-EOKA leaflet, rendered
below7, we can find references to the normative model of peace, as the
leaflet calls upon EOKA for a one-sided cessation of the bloodshed. Also
a replica of a British leaflet, published in The Cyprus Mail of 25 January
1957 (p. 6) says: ‘The people of Cyprus now have a chance of peace
and progress.’ Although these British (but also EOKA) calls to stop the
violence are using elements of the discourse of peace, they are at the
same time strategic interventions to harness and instrumentalise the
normative model of peace to support their own position:
Now they see our island bathed in blood. They consider us the
Cypriot b a r b a r i a n s that shoot sick women in hospitals, murder
Christians in churches, throw bombs into the bedrooms of small chil-
dren, kill respectable Abbots in their monasteries. You, CYPRIOTS,
that cherish our island, our beloved Cyprus, show your bravery and
your free spirit. Protect the good name of our home and the high
level of our Greek culture. R e j e c t t h e f a n a t i c a l t e r r o r i s t s
t h a t a r e c o v e r e d i n b l o o d . (British anti-EOKA leaflet – cursory
emphasis mine, different spacing in original)
Figure 8.1 British anti-EOKA leaflet

176 Nico Carpentier
At the same time the killing of the enemy is not often explicitly
mentioned or discussed, and a distanced and technical language is
used. For instance, Grivas (1964a, p. 39) uses a language which is some-
times more resembling a sports game: ‘In order to counter Harding’s
plan I decided not to take the enemy’s blows lying down but, despite
his enormous superiority, to return them blow for blow in quick
succession, and give him not a moment’s respite.’ A few pages later,
he refers to ‘settling scores with the Turks’ (Grivas, 1964a, p. 44). This
discursive hiding of killing shows an interesting paradox, where on the
hand a form of piety and restraint is applied when talking about death,
supporting the idea that killing remains unethical, and that enjoy-
ment or desire for killing is not acceptable. On the other hand, the
absence of explicit references to killing also prevents the formulation
of a discourse of regret, and renders death a technical issue. Combined
with the emphasis on the evilness of the enemy, this supports a strategy
of dehumanisation, which in turn enables and facilitates the killing of
the enemy.
Representing the ethical dimensions in the

rhetoric of two graveyard sites
After Cypriot independence in 1960, the UK became (through the

Treaty of Guarantee) one of the guarantors not only of the new state’s
independence but also of its bi-communal power-sharing structure
embedded in the constitution. Through its two military bases on the
island, the UK retained a strong military presence, which was also used
to organise peacekeeping on the island during the inter-communal
violence of the 1960s, before the United Nations peacekeeping force,
UNFICYP, was established in 1964. When UNFICYP was eventually
established, the UK also participated in this peacekeeping force, a
situation which has not changed up to the present. The two coun-
tries have more or less regularised their relationships; quite recently,
on 5 June 2008, the Cypriot President Christofias and the UK’s Prime
Minister, Gordon Brown signed a Memorandum of Understanding,
outlining a series of areas where the two countries will strengthen their
cooperation.
Despite the regularisation of the Anglo-Cypriot relationship, tensions
remain visible between these countries, also in the ways the ‘Cyprus
Emergency’ or the ‘Cypriot Liberation Struggle’ is memorialised. For
this chapter we will focus on the analysis of two burial sites and the
secondary texts that give meaning to these sites8. The first one is a small
cemetery located within the Central Jail of Nicosia, containing the

graves of the 9 EOKA fighters executed by the British in 1956 and 1957,
together with 4 EOKA fighters that died in action. Originally established
by the British governor Harding, the so-called ‘Incarcerated Graves’ (or
‘Imprisoned Graves’) are now part of a museum that also contains the
gallows and the prison cells. The second site is the recently established
British Cyprus Memorial (BCM) at the ‘Old British Cemetery’ in Kyrenia
(North Cyprus). A first initiative, which involved Cyprus veteran Dave
Cranston and David Carter, editor of the Cyprus part of the Britain’s
Small Wars (BSW) website, failed in the early 2000s. But a few years later,
the British Cyprus Memorial Trust managed to raise the necessary funds
(through public donations and supported by the British newspaper The
Daily Telegraph) to build the memorial. With its eight solid granite slabs
containing the names of the 371 British servicemen who died on active
service in Cyprus, it was unveiled on 8 November 2009. The location
of the memorial is particular, as it is located in the Turkish-controlled
north. Moreover, most of the people listed on the memorial are buried
elsewhere.9
Both locations are strongly focused on the commemoration of the
dead. The Imprisoned Graves leaflet describes the cemetery as ‘a monu-
ment to heroism [ ... ], a sacred temple of freedom founded on the bones
of the immortal EOKA fighters. Their immortality is declared by an
inscription on the cemetery wall: ‘A brave man’s death is not death’. The
BCM website has a similar emphasis: ‘the memorial is its own testimony
that they have not been forgotten by the country to which they never
returned and in whose service they died. Fifty years on, they deserve
nothing less.’ The process of remembering is articulated with sacrifice,
martyrdom and service (of their own soldiers). On the BCM website we
can, for instance, find a reference to the 1956 funeral of Surgeon-Captain
Wilson, who was ‘shot dead as he was travelling to help a Greek-Cypriot
family’. In the Imprisoned Graves leaflet, we can find references to the
‘thirteen heroes–martyrs’, while also the Afxentiou leaflet refers to his
heroic death, refusing to surrender: ‘He said, that he himself had to fight
and die. [ ... ] The British did not defeat him. They cowardly burnt him
with petrol. But Gregoris Afxentiou will live for ever.’ The two memo-
rial sites also individualise the dead, and further humanise them by
connecting them to their respective social networks. All are mentioned
by name, and their ages and the dates of their deaths are mentioned.
The BCM website has a link to a Memorial book at friendsandrelations.
com, where their lives and deaths are briefly described and where visitors
can leave comments. In the case of the Imprisoned Graves we can find
178 Nico Carpentier
pictures of the 13, combined with citations from their last letters, often
to their families. In addition, the Imprisoned Graves are connected to a
whole range of commemorative sites all over the island (and a multitude
of secondary texts).
Although these memorial sites have the potential to become
contextualised by an ethics of peace and reconciliation, they tend to
slip into an ethics of war model when referring to ‘their’ dead and
to the evilness of who killed them. The BCM website shows quite
some restraint, but the BSW website does so less. Here the British
memorial is described as a memorial to the ‘371 British servicemen
murdered between 1955 and 1959 by Greek Cypriot terrorists [ ... ]’.
The Imprisoned Graves leaflet refers to the cemetery as ‘a monument
to heroism and resistance to the forces of violence and terrorism’ and
to the 9 EOKA members who died at the gallows as ‘heroes who [ ... ]
did not break despite the horrible and inhuman physical and mental
tortures to which they were subjected from the time of their arrest
until the time of their execution’.
This explicit referencing to the ‘evil’ enemy is combined with a
series of erasures and exclusions. The dead of the other are excluded
from heroism, grief and remembrance, as the citation of Lieutenant-
General Sir Henry York La Roche Beverley, a former Royal Marines
officer in stationed in Cyprus subtly illustrates. He is quoted on the
BSW website saying: ‘We members of the Armed Forces, allied to our
comrades in the UK Police Unit and the Cyprus Police, did our very
best to maintain control in an even-handed manner. The great sadness
is that so many service and civilian lives were lost in the process.’
There is a strong emphasis on how these soldiers lived and died, but
there are few references to their own violent acts. If there are refer-
ences to their actions, such as in the Gregoris Afxentiou leaflet, then
we can find a euphemistic language being used, referring, for instance,
to ‘operations’.
The BCM adds one particular dimension to this, as it is explicitly
articulated outside politics, both in general and in relationship to its
particular location. On the BCM website we can find the following
general statement: ‘The memorial is in remembrance of the dead, not
the now distant conflict which ended 50 years ago. It makes no political
point, nor should it.’ The BCM website does its utmost best to argue
that also the location is non-political, stating that ‘it remains for all
practical purposes British ground’ with ‘the Union flag on its gates’ and
‘not [situated] in the “political North” for there was no such entity when
these British servicemen died’. Despite these rhetorical strategies, it can
hardly be ignored that the memorial is in a Cypriot city that is occu-

pied by Turkey and outside the control of the Greek-Cypriot govern-
ment, which defines any implicit recognition of the Turkish Republic
of Northern Cyprus (TRNC) as highly problematic. Not surprisingly,
the Greek-Cypriot protest is strong, especially focusing on the pres-
ence of Peter Millett, the British High Commissioner, at the unveiling
ceremony. At the BSW website the Greek-Cypriot President Christofias’s
disapproval is quoted: ‘I am not happy. The British have every right to
honour their people who lost their lives to EOKA fighters during the
struggle for freedom, but they could just as well create monuments in
Britain instead of Cyprus.’ Also the protest of Thassos Sophocleous, the
president of the EOKA Veteran’s Association, is represented (‘They (the
British) have no right to build such a monument on Cyprus, especially
in the “occupied areas”’) but here it is added that he was a ‘former EOKA
executioner and gang leader in the Kyrenia district’. Not only does this
ignore Greek-Cypriot sensitivities and excludes them from the possi-
bility of exercising their (legal) authority on this issue, but the Greek-
Cypriot protest is then turned against them. When on the BSW website
the secretary of the British Cyprus Memorial Trust, Donald Crawford, is
quoted saying: ‘Soldiers don’t hold enmity for their enemies’, explicitly
denying the ethics of war model, we can find a stark contradiction with
the ethics of war language that is used to depict EOKA elsewhere on the
website. More importantly, we can also find a strategic articulation of
the British (former) soldiers as forgiving and (thus) good, which para-
doxically only strengthens the ethics of war model, again showing that
after 50 years, this model has not disappeared.
Conclusion
The discourse-theoretical approach towards ethics that is used in this

chapter creates an uncomfortable but necessary distance between the
ethical and the potential diversity of normative frameworks. Especially
in the case of structurally disruptive events, such as war and death, there
is a strong need to defend a particular normative position and claim
access to the ethical. But the temporary suspension of this need and
the distance it generates, however difficult it is, is analytically creative,
as it first of all allows a better understanding of the processes that are
involved in the construction of the ethical and, more specifically, the
construction of the ethics of war and peace.
The bracketing of the claims on the ethical also makes it possible
to emphasise the dynamical interplay between rigidity and
180 Nico Carpentier
contingency. Normative models, for instance during armed conflict,

tend to become hegemonised within a particular community or
state, where the ethics of war model becomes the dominant way of
thinking within that community or state. Their hegemonic nature
makes it extremely difficult to resist them. Potentially, this resistance
can provoke death, as the hegemony of the ethics of war model is
protected by the discourse on the traitor. But at the same time, we can
see that over time, the hegemonic nature of the ethics of war model
weakens, and sometimes disappears, when the enemy ceases to be the
enemy. Another argument that supports the presence of contingency
is the inversed parallelism of the ethics of war model that is used by
warring actors. Structurally, both actors engulfed in conflict use very
similar ethics of war models, with only an inversion of subjects to
distinguish them.
The Cypriot case study illustrates the significance and rigid presence
of the ethics of war model, in combination with the inversed paral-
lelism. Not surprisingly, there is a particular strong presence of the
legitimisation ethics of war model in the material of the 1955–1959
period, where the objective (of liberation from, versus the mainte-
nance of, colonial rule) becomes a primary driving force that legiti-
mates the killing. Inflicting death, but also dying, becomes necessary
and unavoidable. The ethical model of peace, which might have been
circulating in the underground of Cyprus, is virtually absent in the
propaganda material, with one important exception, which is its
instrumentalised version, where the ethical model of peace is used,
but claimed by one party to again show the evilness of the other.
Also absent is the celebratory ethics of war model. Although there are
reasons to suspect its existence, it is not discursified. We can only spec-
ulate that the pleasure of killing the enemy remains the unspeakable
secret of some of those who kill.
In a rather uncanny way, the Cypriot case study also shows the
rigidity of the ethics of war model over the past 50 years. Clearly a lot
has changed in this time, with a normalisation of the relations between
the two countries, Cyprus joining the Commonwealth and later (in
2004) the EU, but also many British staying on the island as residents or
tourists. The hegemony of the ethics of war model has disappeared, and
it has largely been replaced by an ethics of peace model. But as the anal-
ysis of the two memorial sites and their secondary texts shows, there is
still an undercurrent of enmity present, which remains uncomfortably
aligned with the north–south divide. When remembering the past, the
ethics of war model makes its reappearance in a language which could
have been uttered 50 years ago. The empathy for the other’s suffering, so
characteristic of the ethics of peace model, is hardly present, which illus-
trates the persistence of the ethics of war model, long after its destruc-
tive force has been awakened.
Notes
1. See also Haraway’s (1991) discussion of dichotomies, with its specific focus on
the human/machine dichotomy.
2. Throughout the text, the Greek names, combined with Latin spelling, are
used for geographical entities. This was done mainly for the comfort of the
author.
3. Derviş Ali Kavazoğlu was killed on 11 April 1965 together with the Greek
Cypriot Kostas Misiaoulis (Chatzipanagiotidou, 2012, p. 110).
4. On 5 October 2012 three elderly Kenyans were given permission by the British
High Court to claim damages from the British government for the abuses
suffered during the Mau Mau rebellion. On 6 June 2013 British foreign secre-
tary William Hague expressed his ‘sincere regret’ for the torture of Kenyans. As
the British government settled out of court, no court case followed.
5. See http://hansard.millbanksystems.com/commons/1957/jul/15/cyprus and
http://hansard.millbanksystems.com/commons/1957/jul/09/prisoners-
wormwood-scrubs
6. See http://www.psywarrior.com/cyprus.html. SGM Herbert A. Friedman
kindly gave permission for analysing this material. Material that has no other
reference originates from this website. The Greek to English translation was
checked (and whenever necessary corrected) by Vaia Doudaki, for which I am
grateful as well.
7. An effort was made to locate the rights holder of this image, but given the
nature of the material this turned out to be impossible.
8. The secondary material on the ‘Incarcerated graves’ are three leaflets produced
by the Council of the Historic Memory of the EOKA Struggle 1955–1959:
‘Imprisoned graves’ (2002), ‘The Greogoris Afxentious Saga’ (2007) and
‘Evagoras Pallikarides. A symbol of the struggle’ (2009). Secondary material on
the ‘British Cyprus Memorial’ are its website (http://www.britishcyprusmemo-
rial.org/) and the relevant part of the Britains-smallwars.com website, whose
members were instrumental in establishing the memorial (http://britains-
smallwars.com/cyprus/Davidcarter/new_memorial/memorial2.html – written
by David Matthews).
9. Most of these soldiers are buried at the Wayne’s Keep Military Cemetery,
located in the buffer zone near Nicosia, which is difficult to access.
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9
On the Deathly Construction of
Society
Arnar Árnason
Introduction: a short story of a tragic death
It was early spring in the year 2012 that a certain Ingibjörg Stefánsdóttir
was interviewed on one of the television stations in Iceland. Ingibjörg1 is
not a person of particular fame in Iceland. She is not a political leader, a
sports hero or a celebrity, say. Hers was not a name or a face that would
be immediately recognised widely, although as the interview went on,
viewers were able to place her in a story they could remember.
The occasion for and the point of the interview with Ingibjörg was a
sombre one, the death of her son, Viktor, some eight months before the
interview was broadcast. Viktor’s death was particularly tragic both in its
circumstances, as I will come to discuss, and in the timing, just before
his 18th birthday. In the interview, Ingibjörg speaks of her grief, of the
difficulty she has in accepting her loss, as therapeutic language might
have it. ‘I know he is dead’, she says ‘but I expect him to appear at the
door all the time’, in words that are deeply if still distressingly familiar
to those who work with bereaved people. With Ingibjörg’s descrip-
tions, a very private and personal story blends into a larger pattern, the
increasing tendency in Iceland, and perhaps more widely, to discuss the
experiences of death and grief in a public forum like the television.
Viktor’s death was publicly marked in a number of different ways
and thus invites consideration of the concerns central to the idea of
the social construction of death. In what follows I will describe these
different public markings of Viktor’s death and place them in their wider
social, cultural and political context. I will argue that attention to the
social construction of death should be accompanied by an even more
important attention to the deathly construction of society. Here I evoke
the work of anthropologists Maurice Bloch and Jonathan Parry (1982)
185
186 Arnar Árnason
who speak of funeral rites as an occasion for the creation of society as a

mortal order. Drawing on recent reworkings of Freudian themes (see Fuss,
1995), I will suggest furthermore that attention to the deathly construc-
tion of society is enhanced by acknowledging the ghostly construction
of the self.
I will begin by discussing briefly the theoretical ideas that inform the
analysis, before describing the marking of death as memorialisation,
mobilisation and investigation.2
The social construction of death and the deathly

construction of society
Viktor’s is a case of a horrifically tragic death that was, as I will describe in

greater detail later, publicly marked in a number of different ways. What
are we to make of this? In Western thought it is frequently asserted that
death is a natural phenomenon. This assertion has long been central to
religious, philosophical and legal thought in the West. It has provided
the fundamental basis for therapeutic practices in bereavement counsel-
ling. It informs the supportive work that funeral directors understand
themselves to be engaged in. And it is central to palliative care. The
assertion that death is a universal and natural phenomenon informs
a number of theoretical works as well. Ernst Becker’s (1973) The Denial
of Death is fundamentally based on this notion as is Zymunt Bauman’s
(1992) argument that culture is an attempt to secure immortality in the
face of natural mortality.
In all these death is constructed as a natural fact. It is of course
acknowledged, and sometimes that is the point of the argument made,
that death can be interpreted in a number of different ways culturally,
socially, politically and of course legally. I want to suggest a step further.
Indeed I want to claim that there already exists plenty of work to impel
us to take a step further. Thus Lindsay Prior (1989) argued that the natu-
ralness of death is itself a social construction, and a social construc-
tion of significant political consequences. Prior (1989) demonstrated
powerfully how the British legal system assumes that death is naturally
natural. Except, the true significance of this construction is its opposite:
deaths that are marked as unnatural. These are deaths that have been
brought about by human agency that can be clearly ascribed to iden-
tifiable individual actions. Thus killings or accidents are, according to
Prior, deemed unnatural. One consequence of this is that inequalities in
death − the fact that life expectancy is very different in different parts
of the UK for example − are made to appear natural, when in fact it can
On the Deathly Construction of Society 187
be argued convincingly that they are the effect of cumulated human

agency. If you are stabbed to death on a Glasgow street, your death is
classified as unnatural. If, however, you die of a heart attack at the age
of fifty having spent all your life in an area of deprivation, your death is
classed as natural.
This, Prior (1989) concludes, has huge political significance as it serves
to hide through naturalisation an organisation of death that is by no
means natural but social and hence political.
While the idea that death is naturally natural is thus a powerful and
a dominant one in Western societies, it is not a universal idea. In many
of the societies that anthropologists have studied, death is in fact seen
as inherently unnatural. That is, people only die because of the actions
and the ill will of others, or they die through witchcraft (see for example
Weiner, 1988, p. 34). The anthropologist Louisa Elvira Belaunde (2000)
writes on the Airo-Pai of the Peruvian Amazon. The focus of her study
is anger, which ‘for the Airo-Pai, ... is not solely an emotional state, but
a transformational force of key sociological and cosmological signifi-
cance ... synonymous with death ... ’ (Belaunde, 2000, p. 209). Amongst
relatives and the truly human, according to the Airo-Pai, anger is
without purpose and hence amoral. It is so because anger inevitably
fuels murderous desire and through that it defines enmity. As such,
anger is for the Airo-Pai fundamentally linked to sorcery. Here death
and serious illness are not understood as natural phenomena but rather
as always caused by sorcery (Belaunde, 2000, p. 214). It is anger that
‘motivates a shaman’s acceptance of sorcery and a view of the world
from a man-eating perspective. Cosmologically, such a transformation
signifies that a radical alienation of kinship is being acted out through
sorcery’ (Belaunde, 2000, p. 216). For the Airo-Pai, then, death is an
unnatural phenomenon, it should not happen and it only happens
through human acts motivated by anger.
In Western thought, then, the tendency is to naturalise death. This, as
Prior (1989) established, is a social construction rather than a naturally
given. What I want to draw attention to in the following is the deathly
construction of society and self. In doing so, I draw on two key theo-
retical sources which are rarely brought together and might appear to
contradict each other.
Anthropologists Maurice Bloch and Jonathan Parry (1982) relate how
death has been conceived as a threat to society in much of the anthro-
pological literature on the subject. This conception is the influence of
Emile Durkheim for whom death is a problem for society, according to
Bloch and Parry (1982), because it fundamentally undermines the claim
188 Arnar Árnason
to eternity upon which society’s moral authority according to Durkheim

depends (see Durkheim, 1965 [1912]; Radcliffe-Brown, 1964 [1922]). In
light of this Durkheim and his followers asked: how can the threat of
death be neutralised through mortuary rituals? Durkheim’s own The
elementary form of religious life contains a graphic description, borrowed
from Spencer and Gillen, of mourning amongst a group of Australian
aboriginals. The description relates how the news of a death sweeps
through the community and highlights the emotional frenzy that
follows. The intense reactions evidenced take the form of self-harm
and self-mutilation, people hit themselves on the head with sticks
until blood is gushing out, or cut deep gashes into their thighs. On
initial reading the scene speaks of the emotions around death, sponta-
neous, chaotic, universal, human, painful emotions. Except, Durkheim
goes on to demonstrate how the injuries people inflict on themselves
follow a strict pattern; they are in fact socially structured. It depends
on people’s relationship with the deceased as to what harm they are to
do to themselves. As such the reactions serve to dramatise and high-
light the importance of the social relations that death has ruptured.
Robert Hertz’s (1960) classic paper on double burials is another cele-
brated example here. Hertz (1960) argued that society requires lengthy
mortuary rituals to recoup and then recycle the work it has invested in
stamping its identity upon the deceased individual, and that through
that ritual work the threat of death can be met and the eternal authority
of society reasserted.
In formulating their theoretical take on death, Bloch and Parry depart
from the Durkheimian orthodoxy by rejecting the personification of
society inherent in it according to which society is not simply superor-
ganic, but a ‘superorganism’ (Ingold, 1986, p. 227). So while Bloch and
Parry share with the Durkheimians ‘a concern with the social implica-
tions of mortuary practices’, they do not share ‘their view of society as
an entity acting for itself’ (Bloch and Parry, 1982, p. 6). Even so, Bloch
and Parry continue, society, or something like that, is clearly part of the
ethnographic reality we encounter, certainly in many places. Society, or
what amounts to the authority of society as a moral order, must hence
be created. Bloch and Parry then argue that death provides an excellent
chance to carry out just such a creation. It is, they say, ‘not so much a
question of [Durkheim’s] reified “society” responding to the “sacrilege”
of death, as of the mortuary rituals themselves being an occasion for
creating that “society” as an apparently external force’ (Bloch and Parry,
1982, p. 6). Death is not so much a threat to society as an opportunity
to mobilise symbolic resources to create that society.
I suggest that considerable insight is to be gained from Bloch and

Parry’s formulation of death as an opportunity to create the moral order
of society. For them, in other words, society is a deathly creation. This
is a powerful formulation as many of the contributions to their volume
demonstrate. However, while this helps us to identify how society is
constructed through death, it leaves somewhat missing an account of
how and why it is that individuals come to identify with society thus
created. Here I suggest insight is to be gained from Sigmund Freud’s
work on loss and subjectivity. In ‘Mourning and melancholia’ Freud
(1957[1917]) came to argue that ‘the ego is constituted through the
remains of abandoned object-cathexes’ (Eng and Kazanjian, 2003, p. 4).
He points out that if ‘one has lost a love-object, the most obvious reac-
tion is to identify oneself with it, to replace it from within, as it were,
by identification’ (quoted by Fuss, 1995, p. 1). As Fuss (1995, p. 1) puts
it: ‘By incorporating the spectral remains of the dearly departed love-
object, the subject vampiristically comes to life.’ Thus as ‘a psychic
entity, the ego is composed of the residues of its accumulated losses’
(Eng and Kazanjian, 2003, p. 4). What this points to, furthermore, is
the importance of the other, if often through loss, in the constitution
of self. We are all haunted from without (Wylie, 2009). Moreover, iden-
tification, mobilised initially or at least most powerfully through loss,
is instrumental in the construction of identity, of self. Identification ‘is
the psychical mechanism that produces self-recognition. Identification
inhabits, organizes, instantiates identity’ (Fuss, 1995, p. 2).
If Bloch and Parry thus suggest the deathly construction of society,
Freud points powerfully to the deathly construction of individual
subjectivity, to the extent that individual subjectivity is ever achieved
at all. However, this line of thinking suggests a link between the deathly
construction of society and of self. Fuss asks (1995, p. 8) what ‘is political
about identification? What role does identification play in the world
of social interaction we call politics?’ Fuss (1995, pp. 9–10) reminds us
that for ‘psychoanalysis, identification defines the very nature of the
political bond’. If, in this reading, social groups are created through
identification between their members, ‘through social ties based upon
a perception of similarity and shared interest, there can be no politics
without identification’, again to quote Fuss (1995, p. 10).
In what follows I will seek to demonstrate how the social, or society
if you prefer, is deathly constituted through the securing of people’s
collective identifications, identifications that in turn are infused
with loss. With that I move back to Viktor’s death, discussing first its
memorialisation.
190 Arnar Árnason
From memorialisation ...
When Viktor died the place where he died quickly became a scene of
memorialisation. Almost immediately people started to leave lit candles
and floral tributes at the scene of his death. The memorialisation was
also carried out on Facebook and other internet locations, as is now
common both in Iceland and more widely – not least in the case of
young lives lost. The remembrance found other forms of expression
too, as soon after his death friends and family got together for a drive
through the streets of Reykjavík in Viktor’s memory.
The choice of this form of memorialisation is interesting. On the one
hand it was unsurprising as Viktor was a keen car enthusiast. As such,
a memorial drive appears as an example of a celebration of a life lost
that increasingly marks funeral rites in contemporary Western societies.
However, this form of remembering also seems cruelly appropriate as
Viktor died in a car crash, a passenger in a car driving at 150 km per hour
along a busy and rather narrow street in the centre of Reykjavík.
The lighting of candles and the placing of flowers at a scene of death,
as in the case of Viktor, is by now a common occurrence in Iceland.
The victims of traffic accidents are most commonly remembered in this
way as these are the most frequent form of otherwise rather uncommon
public deaths in the country.
We can speak of the placing of flowers and the burning of candles that
was involved in the memorialisation of Viktor, as an example of the crea-
tion of what Jack Santino (2006) calls ‘spontaneous shrines’. These are,
according to Santino (2006, p. 5) ‘a relatively recent and growing inter-
national phenomenon’. Spontaneous shrines, Santino (2006, p. 5) adds,
are characterised by ‘the conjunction of the memorializing of personal
deaths within the framework of the social conditions that caused those
deaths’. While deaths have arguably always been remembered publicly,
spontaneous shrines, as Santino (2006, p. 6) speaks of them, point to ‘the
tendency to commemorate a deceased individual in front of an undiffer-
entiated public that can then become participatory if it so chooses’.
Santino’s formulation clearly applies to the memorial for Viktor as
described above. Here a personal death has been ‘placed within the
framework of the social conditions that caused’ the death, embodied
even more so in the drive in memory of Viktor. Furthermore, the form
of the memorial here is clearly socially conditioned, the flowers and the
candles are objects powerfully associated with funerals in Iceland as in
many other places. But what is the basis on which participation takes
place, what entices people to participate in a spontaneous shrine? In a
relatively small country like Iceland, many people can trace a link to
any victim of a death like this, or if not to the victim themselves then
at least to someone closely associated with them. Even when that is not
the case, judging by written comments left and verbal comments over-
heard, sympathy or compassion for the victim and their loved ones is a
powerful motivation. What is more natural than feeling sympathy for
the tragic victim of a brutal accident and their family? Amit Rai (2002)
and Lauren Berlant (2004), amongst others, have argued powerfully that
sympathy and compassion depend on a process of identification. In
feeling compassion we identify with the sufferer, we become, to some
extent, them. And the key observation here is that identification, and
hence sympathy is always selective and thus exclusive; that is, it never
extends to everyone (see Berlant, 2004; Fuss, 1995).
Fuss (1995, pp. 9–10) reminds us that for ‘psychoanalysis, identifica-
tion defines the very nature of the political bond’. That is, not only
does sympathy rest on identification, so too, according to psychoana-
lytical ideas, do those relationships between people we call political. It
suggests that social groups are created through identification between
their members, ‘through social ties based upon a perception of similarity
and shared interest. According to this there can be no politics without
identification’ (Fuss, 1995, p. 10). Here then, I suggest, death brings
together the construction of society as collective identification, and the
construction of self as constituted through the lost other. A memoriali-
sation ceremony in which participants are invited to identify with the
victim, to feel compassion for the bereaved, thus serves to establish the
‘political bond’ (Fuss, 1995, p. 9).
Here I want to make a further link with remembrance. Memory and
memorialisation enter social science at least partly as an attempt to
answer a classic structural–functionalist conundrum, a conundrum to
some extent left to social science by Durkheim: how is the continua-
tion of society guaranteed given that individual people come and go
(Connerton, 1989)? In other words, memorialisation has been offered
as a solution to the problem that individuality and mortality pose for
society. Connerton (1989) in particular has emphasised the importance
of memory and memorialisation in this regarding both in the more
easily recognised form of written history but even more importantly
in embodied, performed memory (see Battaglia, 1992). The danger
here is to posit society as an agent, along the lines Durkheim did, that
calls forth rituals of memorialisation when its stability and durability is
threatened. Rather, in line with Bloch and Parry’s take on death rituals
we can see acts of memorialisation as occasions for the creation of social
192 Arnar Árnason
order. The importance of this is highlighted by the fact that forgetting

is in many cases the important process, rather than remembering. Thus,
Anne-Christine Taylor (1993) reminds us that the Jivaro of the Amazon
have no ancestor cults, that they possess what has been termed a shallow
genealogical memory, and that their funeral rites are simple. They do
not mark out spaces ‘durably associated with the dead’. Yet, ‘the dead
are ... subject to extensive conceptual ... elaboration. Even so the Jivaro
insist on forgetting the dead. How may this be? According to Taylor
(1993) for the Jivaro ‘humanity ... constitutes a closed set of lives, given
once and for all, rather than an indefinitely expandable population ... so
long as the dead are remembered as recognizable and specific individ-
uals, so long as they are present, in a word, the virtualities of existence
they occupy remain unavailable’. In other words, the most recently dead
has to be forgotten before a new life can be born and social reproduc-
tion guaranteed. Janet Carsten (1995) has in a similar vein written of the
island societies of Malaysia that in the anthropological literature have
been characterised as suffering from structural amnesia. What Carsten
demonstrates powerfully is that this amnesia is not a lack, not a defect.
Rather, forgetting here is an active and valued practice. Thus she details
the everyday acts of forgetting that allows for the creation of common
identities in the present and the future in a region of extensive migra-
tion. What is remembered and what is forgotten ties people together
over time and is instrumental in the construction of collective identity
(Carsten, 1995). As Renan (cited by Carsten, 1995, p. 317) noted, ‘the
essence of a nation [or any collectivity] is that all the individuals hold
many things in common, and also that all of them have forgotten many
things’. This is of course the very idea expressed by Benedict Anderson’s
(1983) Imagined communities. Memorials are tied to that process of
convincing others and oneself of a common belonging to a collective
that Anderson (1983) speaks about with reference to nationalism.
Death and the acts of remembrance often associated with it are occa-
sions for the creation of society. It is important to recognise here that
the ‘society’ thus created is then clearly both a temporal and markedly
malleable order and an order with which people’s identification needs
to be continually secured. With this, I now a return to the accident to
move from memorialisation to mobilisation.
... To mobilisation
Following Santino’s formulation it seems reasonable to suggest that

the memorialisation of Viktor spoke against the social conditions that
produced the death in the first place. In fact the public remembering
of Viktor was of celebrating his life by participating in the very activity
he enjoyed the most, the activity that in a way killed him. Thus the
memorialisation quickly turned into a mechanism to change the social
conditions that caused the death. Viktor’s death quickly became the
latest fatality mobilised in Iceland in the fight against traffic accidents,
in particular those caused by speeding amongst young drivers. While
campaigns against traffic accidents have been ongoing in the country
for some decades, only recently have they become so closely tied to
individual fatalities as in this case, only recently have clearly identifi-
able and remembered individual deaths been mobilised in such a way.
Here the intensely personal is articulated with the political as symbols
often associated with private grief are placed in the context of political
demand.
One example of the articulation of the private and the political
in this regard is the erection of 52 white wooden crosses along the
relatively busy Suðurlandsvegur that connects the capital of Iceland,
Reykjavík to the South of the country. The initiative originated with
the greenhouse farmer Hannes Kristmundsson and his wife, Sigurbjörg
Gísladóttir, and did not initially involve any government agencies at
any level.
Figure 9.1 Memorial crosses by Suðurlandsvegur, Iceland

194 Arnar Árnason
In a newspaper interview at the time of the unveiling of the crosses

Hannes Kristmundsson said:
I have thought about this for a long time how it could be highlighted
just how many people are injured on this route. I’m always shocked
when I hear on the news that there has been an accident there. You
see, each accident affects so many people. We received a lot of support
from various directions when we floated the idea.
The 52 crosses each represents a life lost on the road. One news report
of the unveiling of the crosses explains that: ‘In the last 16 years there
have been 2576 accidents on this road, with 1222 people injured.’ In the
interview Hannes explained further that the plan was that the crosses
should only be temporary, that one permanent memorial will replace
the crosses once the road is ready. Is the road not ready, someone might
ask mischievously? No wonder there are accidents there. The answer
rests on what is meant by a road being ready. Again Hannes explained
that:
I want to see this turned into a dual carriageway with proper

lighting. ... It is our hope that the crosses will stir our politicians and
the public in general to think about this issue. A lot is to be gained by
the prevention of accidents.
The road will be ready when it is a dual carriageway and properly lit,
presumably like urban streets tend to be. By this, responsibility for the
2576 accidents over the last 25 years is firmly placed on the road and,
by extension, those responsible for building and maintaining the road:
making sure that it is ‘ready’. This is of course where political leaders,
the guardians of the public purse, enter the picture as the most impor-
tant audience. Responsibility is by this endeavour and in one fell swoop
moved away from drivers, even those that may have paid scant regard to
the conditions in which they were driving. Responsibility is also removed
from car makers who make cars capable of driving much faster than
most humans can cope with. The effect that the crosses have in distrib-
uting, or redistributing, responsibility is of course intensely political.
I want to stay with the formulation of responsibility a little bit longer,
for it echoes in interesting ways how road deaths are frequently repre-
sented, constructed I should perhaps say, in powerful public discourses
in Iceland. The media in the country will quite often do a feature on
road deaths. These will mix personal stories with demonstrations of
the more widespread consequences of accidents. The interview with

Ingibjörg with which I began this paper is a case in point.
An example, by no means unique or indeed unusual, of media
coverage of road deaths in general that I want to focus on is from July
2005. This is the cover of the weekend edition of a popular Icelandic
newspaper DV.
The text in the left top corner explains that if things continue as they
are going some 25 people will die in traffic accidents in Iceland this year
(2005). The paper will carry out a detailed analysis of the ‘killing fields’
that the highways of the country appear to be. It concludes by saying:
‘There are far too many black spots in Iceland’. The headline itself says:
‘Deaths on the highways’. That is followed by the command: ‘Let’s
honour the memory of the thirteen people who have died in traffic acci-
dents this year’. Twelve of these thirteen then appear in photographs
with their names and ages provided. Inside the paper is a further descrip-
tion of the fatal accidents of that particular year and of the victims them-
selves. Where the victims lived is mentioned as are in many cases those
they ‘left behind’, spouses, children, parents and siblings. The personal
details, the humanising effort provided about the victims, in some cases
even termed heroes, and the map achieve the same effect. They help the
reader to identify with the victims. They become more easily recognis-
able people. The places of their death will be familiar too. In some cases
readers may even recall roadside memorials erected in honour of the
victims on the list.
The list and the map together achieve a further effect. As in the case
of the crosses along Suðurlandsvegur, those who have died here enter a
generalised category of victims. That is, no attempt is made to attribute
various degrees of responsibility to the deceased for their own deaths or
even possibly of others around them. They are all equally victims here.
The headline over the map reads: ‘Black spots in Iceland’ these being
places of particular concentration of accidents. Again the accidents are
naturalised, the responsibility for them mapped onto and thus attrib-
uted to the land itself. In this the accidents become representatives of
the harsh nature (Brydon, 1996) Icelanders frequently imagine them-
selves to have struggled against for centuries, while the victims become
the representatives of the nation, the sacrificial cost, another term some-
times used in the media representations, of the struggle against nature.
Here the social then is constructed, again through death and memoriali-
sation but also through mobilisation. And as the social, the collective, is
thus constructed it is constructed as the nation and the nation as against
and in a struggle with a harsh environment.
196 Arnar Árnason
Figure 9.2 Road deaths, front cover of DV newspaper

This, it rather goes without saying, is not the only way to distribute
responsibility. Neither is it the only way to remember victims of traffic
accidents or construct the social, even the social as nation, around the
mobilisation against fatal accidents. An additional form of remembering,
mobilising and distributing is discussed in what follows.
Investigation and the distribution of responsibility
Road deaths are also memorialised in another, in some ways more offi-
cial, way. All fatal traffic accidents in Iceland are investigated by the offi-
cial Road Accident Analysis Group. The Group is composed of a lawyer,
an engineer and a doctor. Another engineer is listed as the employee of
the Group.
The investigation began the evening of the accident that led to
Viktor’s death, the conclusion of which is contained in an annual report
published the following year. These annual reports contain separate
reports on each accident with additional analysis of general trends in
traffic accidents. The reports are public documents (www.rnu.is) and
publication of them is noted in the media in Iceland that thus inscribe
a particular memory of the accidents in question.
The annual report is formatted in such a way that reports on each
individual accident form effectively a new chapter. The heading is the
place and time of the accident, reminiscent of the map above, the nature
of the accident, and the death. The reports then all have the same basic
structure. A short summary, an abstract as it were, is followed by a brief
overview of the conditions where and when the accident happened.
Here the weather, the road, the time of day and the vehicle are named or
briefly described. This is then followed by three main sections: a narra-
tive description of the accident; causal analysis of the accident; and
recommendations for improving road safety based on the analysis of
the accident in question.
The report on Viktor’s death contains a detailed description of the
place of the accident, a junction of two quite busy streets in the west
end of Reykjavík. This includes numerical details regarding the amount
of traffic in the area, both vehicular and pedestrian. The events leading
up to the accident – two young drivers engaging in an impromptu race
as they set off from the same traffic lights – are carefully described as are
the cars involved in the race, both BMWs. The accident itself is described
and its consequences, most striking and importantly of course the death
of Viktor from the injuries he sustained in a collision with a 500kg stone
and a house by the corner of the road. The speed of the car in question
198 Arnar Árnason
is then given as 119 km/h as calculated by an ‘expert’. It is noted that

the driver only had a provisional driving licence. The condition of the
car itself is also reported. It is noted two different types of tyres were at
the front and that the brakes were worn. The report states that the driver
had tested negative for alcohol and illegal drugs.
This description of the accident itself is then followed, under a sepa-
rate heading, by causal analysis. Here three factors are noted: the driver
drove much too fast given the conditions; the driver did not have the
required driving license and was inexperienced; the two drivers were in
a race in regular traffic, an indefensible activity as it says in the report.
The causal analysis is followed by recommendations. First, it is pointed
out that racing in regular traffic is irresponsible and indefensible; the
same word is used again. The Group says that it is a mark of great lack
of judgment to engage in a race on a busy city street like this and thus
‘endanger the lives of other travellers’. It adds that it is important that
significant punishment be applied to such activity, that racing on the
streets is intolerable. Second, it is noted by way of recommendation that
the driver of the car involved in the accident itself had not acquired a
full driving licence, only a provisional licence for practising and was
thus not allowed legally to drive without an ‘instructor’. ‘Lack of driving
experience and understanding of how cars operate, combined with over-
estimation of his own abilities as a driver, were the key factors in the
accident’ the report concludes. ‘People learning to drive should never
drive without an instructor or their passengers to allow that to happen.
It is important that drivers, their guardians and their instructors obey
this rule.’
This report, as are all the reports on individual accidents, is prefaced
by the following: ‘The investigations of the Group aim to uncover the
causes of traffic accidents to ensure that the same kind of accident does
not happen again. The aim of the Group is not to apportion blame or
allocate responsibility but rather to improve road safety in accordance
with Law ... .’ This statement seems to be rather contradicted by the
content of the report on this particular accident. Blame and responsi-
bility are quite clearly assigned: to the two drivers racing, to the driver
of the car that crashed, and to the passengers in the car. In fact the
driver who crashed was in due course prosecuted for causing death by
dangerous driving.
So what are we to make of this? The Group is of course, as is public
discourse more generally, caught in something of a bind here. Often
enough it is the driver or drivers themselves who are the victims of the
traffic accidents at the same time as they may be construed as the cause
of the accident themselves. An accident in a small village in Iceland

where three people died caused considerable divisions in the commu-
nity, although these were not reported publicly. One of the drivers was
clearly seen as responsible for the accident making the commemoration
of his life problematic and threatening to undermine the legitimacy of
the grief of his relatives. What this points to, and what amounts to the
conclusion I want to draw from this section, is that here in the work
of the Group society is again being constituted in a ghostly fashion,
created through death. Here it is not as a nation against a harsh nature,
but rather as moral conduct, responsible behaviour, care and considera-
tion for the lives of others. The power of the construction again rests
on the possibility that people have of identifying with the victims here,
how the losses of others can or cannot be identified with, incorporated
into one’s own losses and placed in a context of the losses suffered by
the nation.
Conclusion
In this paper I have sought to draw attention to the deathly construc-

tion of society. In doing so I have drawn on the work of Bloch and
Parry (1982), who argue that mortuary rituals offer an opportunity for
the construction of society as a moral order. What this line of thought
leaves relatively underdeveloped, however, is how it is that people come
to identify with and subject themselves to the social order thus created.
Here I have suggested that insight is to be derived from Freudian accounts
of the role of identification in mourning. What recent readings of Freud
(Fuss, 1995) have highlighted is the importance of identification, mobi-
lised through mourning, in the construction of the self. Identification,
to paraphrase Fuss, is the journey through the lost other to the self.
Furthermore, identification is the basis of sympathy and compassion,
implying identification further with the emotions one is invited to feel
during ceremonies of memorialisation and remembrance. In this line of
thought, moreover, identification is the basis of the political bond, of
collective identity.
Linking this insight from recent re-readings of Freud allows us to
address more squarely than Bloch and Parry’s work by itself the ques-
tion of how people’s identification with the collective is secured. Thus
in the example I have discussed I have traced how, in one form in
one moment, the identification may be with the nation against harsh
nature, in another context the identification may be with responsible
behaviour against irresponsible actions. In the case I have explored, the
200 Arnar Árnason
moral order is established through memorialisation, through mobili-

sation and through investigation and prosecution. But not only is the
moral order thus established, at every turn people are being persuaded
of their belonging to, their identification with that order. Death and
memorials, I have finally suggested, are particularly powerful here as
they combine the personal and private, the way in which the self is
constructed through its accumulated losses with the public construc-
tion of collective identity in the face of loss. The collective, that we
often term society, is created and recreated always partially and some-
what hazardously through death and memorials. People’s identifica-
tions become all the more powerful the better they can subsume their
own losses within the losses that ‘society’ must face. Death is socially
constructed because society is deathly constructed; society is a deathly
construction because the self, identity, are deathly constructions. The
self is the ghostly remains of lost others precisely because society is a
deathly construction.
Notes
1. I follow Icelandic convention in using given names. While the events described
are firmly in the public forum I have decided to use pseudonyms.
2. In this paper I draw on research into the politics of death and grief in Iceland
that I have carried out over a number of years with my colleagues Sigurjón
Baldur Hafsteinsson and Tinna Grétarsdóttir. My thanks also to the editors
and other participants at the workshop the paper derives from for their inval-
uable insight and support.
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Part IV
‘Governing’ Death and the Dead
10
From Theft to Donation:
Dissection, Organ Donation and
Collective Memory
Glennys Howarth
Introduction
Dissection of the human corpse has for a long time been considered
abhorrent; a fate worse than death. In a short extract, Helen MacDonald
(2006) illustrates the view on dissection as an abominable doom as she
describes the public death scenes of executed murderers whose bodies
subsequently underwent the post-mortem punishment of dissection to
great applause from the crowds who had gathered for the spectacle:
Until 1832, London’s College of Surgeons had been receiving all the
bodies of those executed for murder in that city since 1752. These
public dissections were crafted social events. Astley Cooper, who
carried them out, found that the College’s theatre was constantly
crowded, and the applause excessive. Executions, too, were public
spectacles that attracted huge and rowdy crowds. They were usually
performed at eight o’clock on Monday mornings, following which
the body was left dangling at the end of the rope for an hour before
being carted to the College’s house. (MacDonald, 2006, p. 13)
Attitudes towards the dissection of the human corpse have trans-

formed a great deal ever since. Indeed, current attitudes to the removal
of organs from the dead body for transplant suggest a willingness to
undergo dissection. In the case of organ donation there is a perennial
shortage of organs available for transplantation and a stark mismatch
between those who register as donors and those who say they support
organ donation. In the UK in 2012 18.5 million people had registered as
205
206 Glennys Howarth
donors; approximately 29 per cent of the population. This is a substan-

tially smaller percentage than the 70–90 per cent of the population who,
when asked, say that they would be willing to donate their organs after
death (BMA, 2012, p. 8). This relative scarcity of organs reflects the situ-
ation in many other Western countries. In the UK alone, more than
10,000 people are currently on the waiting list for organs and 1,000
die each year because there are insufficient organs for transplantation
(NHS, 2012). In the UK, people from Black, Asian and minority ethnic
communities make up 27 per cent of the waiting list for organs but
only account for 5 per cent of registered donors. The situation is similar
in other Western societies. In Australia, for example, market research
consistently shows that around 98 per cent of the population are in
favour of organ donation and yet Australia, like New Zealand, has one
of the lowest donation rates in the world.
This chapter examines the histories of dissection of the dead body
and the willingness to donate organs after death and suggests that there
might be parallels between the two with the principle of bodily integ-
rity structuring responses to both. In so doing, the discussion begins by
arguing that attitudes to, and practices that surround, the dead body are
socially constructed and reflect the complexity and interrelatedness of
individuals and communities through prevailing religious, political and
medical discourses that identify its cultural value.
Foucault defines discourses as systems of knowledge that inhere in
‘social practices, forms of subjectivity and power relations’ (Weedon,
1987, p. 108). These systems of knowledge change between ‘epistemes’,
or periods in history, as knowledge and practices become more or less
dominant according to their relationship with power. Thus, certain
discourses attain the status of truth within a particular era and as such
give shape and meaning to the social world, whilst at the same time
other discourses are marginalised and may become sites of resistance or
challenge hegemonic beliefs and practices. In the context of the dead
body, whilst in pre-modern societies the dominant discourse was that
of religion, that associated the corpse with resurrection and the afterlife,
this was replaced by a dominant medical discourse that adopts a ration-
alist perspective viewing the mind and body as separate.
The chapter considers the discursive shift from ‘theft to donation’
and begins by exploring eighteenth and nineteenth century practices
of bodily dissection as carried out by anatomists and surgeons who
increasingly relied on illegal means to procure bodies for their work.
The impact of this on populations who were most susceptible to having
their corpses dissected will be explored. In turning to current attitudes
From Theft to Donation 207
to organ donation, contemporary medical discourses will be examined

together with media campaigns that encourage individuals to altruisti-
cally ‘gift’ their organs after death. Inspired by a Foucauldian frame-
work, the problem of a scarcity of available organs will be addressed and
the question posed as to whether an apparent reluctance to donate is
related to collective memories of nineteenth century medical practices
that targeted poor, destitute, and minority ethnic populations for what,
at that time, was predominantly considered to be the detestable practice
of dissection.
Discourses of the dead body in pre-modern society
The bodies we inhabit signify that we are human; the meanings we

attach to the body and every element of it depend on the discourses
that surround and structure its value. These discourses differ not only
across time but also according to religious beliefs, political systems, and
social hierarchies of power and status. Accordingly, the dead body has
symbolic meaning that is socially constructed and varies according to
dominant discourses within historical periods and the cultural values
and mores of different societies. In Western societies, certainly since
the medieval period, the integrity of the body – in death as in life –
has been paramount in terms of human dignity with respect for the
corpse being a central element of respect for humanity itself (Douglas,
1970; Huntingdon and Metcalf, 1979). During the middle ages, the
dead body was constructed through religious and political discourses
(Bynum, 1995). Christianity was the dominant framework for under-
standing the nature of the world and the dead body was considered
to be essential if one was to achieve resurrection in the afterlife.
This might take the form of bodily resurrection or, in keeping with
the awareness of decay, the symbolic integrity of the corpse which,
although not expected to physically reconstitute after resurrection,
would be symbolically whole. The desire for resurrection into the after-
life was fundamental to medieval Christian populations and required
survivors to perform specific disposal rituals that sought to retain the
integrity of the body and reflected respect for the dead (Bynum, 1995;
Kselman, 1993).
Indeed, the bodies of saints were frequently said to resist decay and
their relics, in the form of hair, bones or even organs, were especially
venerated. These relics were considered to hold spiritual power and
the medieval practice of removing body parts shortly after death was
justified on the grounds that at Judgement their body parts would be
208 Glennys Howarth
reunited. In the meantime, the retention of their relics would spiritually

benefit those who came into contact with them (Bentley, 1985).
Alongside religion was the political discourse, enshrined in the notion
of the Divine Right of Kings, which gave the monarch absolute power
over the bodies of his subjects (Foucault, 1998) and the accepted right,
in cases of treason and similarly heinous crimes, to deny the perpe-
trator eternal life by ordering post-mortem dismemberment following
execution. During the medieval period this dismemberment may
have taken the form of decapitation (with heads displayed on spikes
outside prominent buildings as warnings to others); with the advent
of the Enlightenment, and the growth in the discipline of anatomy,
the bodies of serious felons might be donated to the anatomists for
dissection.
What is clear from these discourses around the integrity of the
corpse is that cultural practices requiring respectful disposal of the dead
body, ‘rested in the purpose of the dismemberment’ (Lawrence, 1998,
p. 116). In the case of Saints’ relics, removal of body parts, which were
considered to be sacred and invested with spiritual power, held a thera-
peutic purpose; in the case of criminals, it was a form of post-mortem
punishment.
From the viewpoint of the individual, as Lawrence (1998, p. 112)
argues, ‘the ways in which humans have used body parts at any partic-
ular time and place depend directly on the meaning (status, power,
value, etc.) attached to the human being from whom they came’. We
will consider the significance of this assertion later in the chapter but
first, let us return to the nineteenth century scene at the Surgeon’s Hall
and the practices of dissection.
Bodily dissection
It is worth reiterating that dissection had for centuries been used as a

form of post-mortem punishment for executed felons and that, post-En-
lightenment, the anatomists relied on this supply of bodies to progress
their knowledge of the human body. The quest for knowledge of the
inner functioning of the body was a precursor to the aim of regulating
the human condition and combating disease and other pathologies, and
already indicates the emergence of a more rationalist discourse along-
side the dominant religious discourses of that time. With the exponen-
tial development of the disciplines of anatomy and medical science, the
demand for fresh corpses proliferated. By the eighteenth and nineteenth
centuries the number of bodies available (those of executed felons) was
woefully inadequate for the purposes of research and education. The

solution to this problem of supply and demand came in the practice of
grave robbing.
Although there is no legal ownership of a corpse and, therefore,
criminal prosecution was not available to the authorities, the old adage
of ‘resting in peace’ was taken seriously and anyone found disturbing
graves would face punishment from the local community.
There was a distaste of bodily mutilation and a concern, that continues
today, to ensure that the bodies of the deceased were treated with respect
and buried appropriately. According to Richardson (1996, 2006), a latent
belief in a sentient corpse meant that dissection might inflict pain on
the deceased, who as a consequence, could seek retribution from the
grave. Furthermore, at a time when there was considered to be a link
between the body and the resurrection of the soul, dissection placed
the deceased’s eternal life in jeopardy. A further significant factor asso-
ciated with dissection was the fear (at a time when it was difficult to
accurately determine that death had taken place) that the person may
still be alive.
The body snatchers, as they came to be known, plied a lucrative trade
and the anatomy and medical schools relied heavily on their services.
In order to safeguard the bodies of deceased loved ones, families would
take protective measures such as guarding the graveyards personally or
paying for the services of a night watchman. Wealthier families erected
iron gates and railings around graves and used fortified coffins and iron
straps to hold the dead securely in their coffins. Although anybody
could end up on the dissecting table, wealthier people were generally
less at risk and more able than the poor and marginalised ethnic groups
to protect their dead.
As noted earlier, those engaged in the chain of the supply and demand
for corpses faced public outrage when discovered. In the United States
their activities led to rioting. The most famous riot was the New York
Doctor’s Riot of 1788, when rioters burned down an anatomy laboratory
and seven people were killed in the violence that followed.
In the UK the work of the body snatchers was brought to a head by the
infamous activities of William Burke and William Hare who bypassed
the problem of removing fresh corpses from the grave by murdering
people in order to sell their bodies to the Edinburgh anatomist and
surgeon, Dr Robert Knox. Following the prosecution of the two men
and the hanging, dissection and display of Burke’s corpse, Knox’s house
was attacked by a mob appalled at his role in the practice and the fact
that he had eluded prosecution.
210 Glennys Howarth
Surgeons considered the procurement of corpses as necessary to the

aim of increasing their knowledge and understanding of the body in
order to continue their assault on disease. The methods of obtaining
corpses were, however, generally viewed as unsavoury and attempts
were made to secure a more socially acceptable supply. In the USA, in
order to avoid scandal and public retribution they targeted vulnerable
or marginal populations (Blakely and Harrington, 1997; Sappol, 2004).
As Humphrey (1973, p. 820) asserts, they focused their efforts on those
‘groups who could offer little resistance and whose distress did not arouse
the rest of the community. Blacks and white paupers provided attractive
targets’. This claim is reinforced by Savitt (1982, p. 339) whose research
revealed that in 1831 the Medical College of South Carolina advertised
that they could provide ‘subjects’ from the African American population
for ‘proper dissections ... without offending any individuals’. A similar
reliance on the bodies of minority ethnic groups was found in colonial
contexts. In Australia, for example, Aboriginal people were especially
at risk, and none more so than indigenous Tasmanians. Tasmanian
bodies held particular interest for European anatomists who considered
them to be distinct (and because of the anatomists’ practices they soon
became extinct) from those of the Aboriginals of mainland Australia
(MacDonald, 2006).
The public horror of body snatching and dissection, together with
the call from the medical profession for a better legal supply of corpses
led, in the UK, to the Warburton Anatomy Act of 1832 which promised
medical schools the unclaimed bodies of those dying in workhouses,
mental asylums, hospitals and prisons. In the USA similar legislation
was enacted in a range of States (Blakely and Harrington, 1997). In
both countries this solution was seen by some as a means of deterring
the poor from seeking poor relief and, by others, as a mechanism for
allowing the poor to pay their debt to a society that had supported them
(Richardson, 1987). Irrespective of whether the legislation was viewed
positively or not, it essentially ‘perpetuated an attitude that had not
changed much since the days when judges condemned criminals to
dissection after execution: dissection remained a humiliation imposed
on social outcasts’ (Humphrey, 1973, p. 824).
From theft to gift
Perhaps surprisingly, given the depth of popular repulsion towards the

dissection of the dead body, in 1969 – only 132 years after the introduc-
tion of the Warburton Anatomy Act – of the 242 bodies dissected in
London’s medical schools that year, 238 were bequests (Dooley, 1973).
This, together with current positive attitudes to organ donation, points
to a discursive shift from theft to gift, indicating the emergence of a new
episteme where the dead body became increasingly constructed and
given meaning from within a biomedical framework. With increasing
secularisation, or perhaps more accurately the decline in orthodox
Christian faith, the religious discourse that defined the body in terms
of its spiritual significance has waned and along with it a belief in an
afterlife entailing bodily resurrection.
The dominant discourse of medical science, to which we will come
back later, cannot be isolated from a changing approach towards the
body that goes beyond the sphere of medicine. A number of studies
have indeed pointed to the emergence of a new approach to the body
(Featherstone, 1991; Hallam et al., 1999; Turner, 1992) that suggests,
as Shilling (1993) argues, the body is now increasingly central to the
construction of self-identity. According to this thesis, the body is a project
to be worked on, and in this context death is the inevitable failure. The
dead body thus becomes something that no longer has use value, an
object to be discarded. Rather than simply disposing of it as waste, body
donation temporarily extends its functionality and can be viewed as a
gift that assists in medical research and education. Furthermore, atti-
tudes to the dead body have become subject to secular laws and moral
codes that emphasise an individuality bound up within discourses of
autonomy and informed consent (Lawrence, 1998). Although the
notion of respect for the dead, demonstrated through culturally sancti-
fied disposal practices, continues, the discourses surrounding respect for
the body in contemporary Western societies are now more concerned
with respecting the wishes of the deceased rather than the ritual prac-
tices of religious systems.
This shift reflects the increasing significance of medicine through
the medicalisation of social life, and what Foucault (1973) referred to
as, the ‘clinical gaze’: the separation between the body and the iden-
tity of the individual. Within medical discourse death and dying have
come to be viewed as scientific problems to be challenged or resisted.
The promise of power over mortality is founded on achieving a sophis-
ticated understanding of the functioning of the human body; knowl-
edge that has been made possible largely due to anatomical science
and dissection.
Due to the medicalisation of everyday life this knowledge is no longer
limited to anatomists or the medical profession but has been democ-
ratised and disseminated via public education programmes, not least
212 Glennys Howarth
of which are those taught in schools or accessed via the internet. The
democratisation of knowledge of the human body has resulted in public
recognition of the validity of the goals of anatomy and medical science
and a greater likelihood of body donation after death.
This shift in the dominant discourse from religion to medical science
may well account for the increase in the number of people who bequest
their bodies for medical research and training. However, the number of
bodies needed is relatively small compared to the size of the population
and, furthermore, an examination of studies which have researched atti-
tudes to body donation suggest that for some sections of the population
the discourses surrounding dissection have changed very little.
For example, a study conducted in the US by Boulware et al. (2004),
found that older age and African American respondents were 50–60 per
cent less likely than other respondents to become whole body donors.
People with strong religious faith or spirituality were 60–70 per cent
less likely to donate, and those agreeing with either of the following
statements were 40 per cent less likely to donate their body for medical
dissection:
Rich patients receive better care at hospitals than poor patients.
White patients receive better care at hospitals than other racial or
ethnic groups.
The findings from this and other studies indicate a strong correlation
between reluctance to donate and social class, race and ethnicity, strong
religious belief and older age.1
This suggests dissent from the dominant medical discourse, echoing
an earlier discourse related to religious belief. It may also expose a
marginalised discourse born of subjugation that challenges and resists
the hegemonic values and practices of biomedicine at the heart of which
lies the mind/body distinction.
Organ donation
As noted earlier, there is a scarcity of organs for transplant despite public

opinion polls that claim over 90 per cent of Western populations are
in favour of organ donation. High profile public health and media
campaigns to promote donation depict the practice as an uncontested
good with representations of donors as heroes, altruistically gifting their
organs to save the lives of the young and innocent. The principle of
altruism has long been fundamental to these campaigns that focus their
rhetoric on the notion of the donated organ as a gift. The gift object, in
this case a human organ, is embedded with meaning and significance
and holds within it a part of the giver: giving and receiving creates
a social bond between the two parties that assumes an obligation to
reciprocate.
Shaw (2010) considered the efficacy of the rhetoric of ‘gift’ and
argued that although it might be adequate for public rhetoric and
procurement drives, it is not weighty enough for organ procurement
professionals.
Based on interviews conducted with care specialists and donor and
recipient coordinators, she problematised the concept of the donated
organ as gift by arguing that within consumer cultures gifts are often
understood as superficial, superfluous or easily disposed of (Shaw, 2010,
p. 613). Shaw suggested that the donation of human tissue and organs
is better understood as a sacrifice – a significant, serious, and often
painful act (Shaw, 2010, p. 611). The importance and potential trauma
involved in the act of the donation highlights the cultural significance
of the dead body and continuing emotional attachment with the body
of a loved one after death (Hallam et al., 1999; Sque and Payne, 2007;
Wilson, 2001). Potential donors and their families may also have strong
opinions about how body parts are used, and when they are willing to
donate, which body parts are available.2 Thus, the debate around organ
donation and transplantation does not simply hinge on which system
will harvest the largest bounty of organs – a perspective that assumes a
rationalist medical discourse that perceives of the body as a ‘machine’
with interchangeable parts to be allocated in whatever way best serves
the common good of society. The cultural values of the actors involved
must also be considered if an explanation is to be found for the gap
between those who say they are willing to donate and those who actu-
ally register to do so.
Where bodies and organs are concerned some minority ethnic and
religious groups discourage donation as they continue to believe the
body should remain whole. For people of all ethnic and religious back-
grounds the decision about donation is likely to be difficult or, if offered,
may later lead to trauma as although clinical death has been announced,
family and friends may continue to perceive the body as the site of the
self.
Organ transplantation practice emanates from a biomedical discourse
that assumes that the body and the self are entirely separate. Only
by accepting this body/self separation can organ donation be made
possible.
Thus the body is constituted as an object rather than as an entity that
composes the self. Although a fairly simple mind/body dichotomy may
214 Glennys Howarth
inform medical practice it has little validity for relatives who tend to
view the body and its parts as more than a discarded shell or vehicle for
the soul (Hallam et al., 1999). Moreover, whilst people often take a prag-
matic approach to the continued use of their own organs after death,
bereaved survivors ‘ ... are more deeply concerned with what happens to
the body of a loved one’ (Wilson, 2001, p. 339).
In one of the few studies that explore lay understandings of organ
donation, Moloney and Walker (2002) conducted focus groups with a
random selection of people in Western Australia. They were interested
in understanding why market research showing that the majority of
people in Australia are in favour of organ donation does not trans-
late into high donation rates. Discussions from four focus groups were
recorded and analysed and respondents were found to hold a ‘pro-dona-
tion’ and ‘qualified pro-donation’ stance simultaneously. The qualifica-
tions voiced were concerns about death determination; the mutilation
of the body; the possible need to keep the body intact; and a mistrust of
the medical profession.
Moloney and Walker (2002) make the point that social representa-
tions (which inform people’s perspectives on organ donation) are fluid
and dynamic, changing over time. Yet, their respondents concerns were
remarkable similar to those expressed about dissection in the nineteenth
century.
This suggests that further possible explanations for the reluctance
among some sectors of the population may be that organ donation is
associated with fragments from an earlier religious discourse that viewed
body integrity as paramount.
Reluctance to donate may also reflect deeply held collective memo-
ries of abusive anatomic and medical practice resulting in a distrust of
the medical profession and may point to a marginalised discourse that
resists the practices of the dominant biomedical model.
Collective memory
At its most basic, collective memory refers to memory that is constructed,

shared and passed on within a group or community (Halbwachs, 1980).
In this context, the eighteenth and nineteenth century practice of body
snatching and the subsequent Anatomy Acts targeted the bodies of
the socially vulnerable – predominantly the poor, blacks, indigenous
people and ethnic minorities. Contemporary wisdom at that time would
have alerted these groups and communities to the high risk they faced
of having the bodies of their dead dissected. For people from lower
socio-economic groups this would have increased the indignity and fear
of becoming destitute and of ending their days in a public hospital,
asylum, prison or workhouse – in the UK, from 1832, legal sources of
bodies for the medical schools.
As the nineteenth century gave way to the twentieth, with the more
immediate concerns of mass death in World War I, the misery of the
Depression of the 1920s and 30s, World War II and the rapid moderni-
sation of society, collective memory associated with bodily dissection
would have waned particularly in the light of the loss of storytellers to
narrate the history (Fowler, 2005)3 and physical landmarks, such as the
workhouse, which stood as the material reminders of risk.
Nevertheless, as late as the 1930s, in an article entitled, ‘How the Poor
Die’, George Orwell reflected on the few weeks he spent in a public
hospital in Paris, noting that
... within living memory it used to be believed in London that in

some of the big hospitals patients were killed off to get dissection
subjects ... And especially in the early part of the last century, when
medical science had grown bolder than before without being any
more successful, the whole business of doctoring was looked on
with horror and dread by ordinary people. Surgery, in particular, was
believed to be no more than a peculiarly gruesome form of sadism,
and dissection, possible only with the aid of body snatchers, was even
confused with necromancy. (Orwell, 1946, p. 5)
The lack of physical reminders does not imply that the collective
memory is totally lost when places and events or activities no longer
hold an immediate meaning. Rather, collective memory may become
attenuated and blurred, perhaps leaving a sense of unease around a
particular phenomenon, the rational foundations of which are difficult
to identify.
‘Collective memory often possesses a certain fuzziness’ (Fowler,
2005, p. 55) but as Durkheim argued of collective representations,
these memories ‘are never entirely forgotten’ (Durkheim, 1964, cited
in Fowler, 2005, p. 54). When an individual is asked to reflect on why
they might be opposed to, or reticent about, organ donation – the domi-
nant discourse of which extols it necessarily as a good, altruistic and
heroic act – rational explanations may not come easily (especially in the
context of moral disapproval). Yet, an ‘intuition’ that there is something
‘simply wrong’ about the practice may exist, despite the difficulty in
producing a reasoned explanation.
216 Glennys Howarth
This sense of unease may be founded on, and compounded by, a

mistrust of a medical profession that over recent years has been exac-
erbated by the scandals associated with hospitals retaining body parts
without permission. And, as Sappol (2004) notes, there has always been a
stark distinction between the anatomists and surgeons and those whose
bodies were procured for dissection; the former recruited from the middle
and upper classes and the latter from felons, the lower social classes, and
black and ethnic minorities. As noted earlier in the chapter, the ways
in which body parts are utilised depends on the prevailing meanings or
value associated with the individuals from whom they are sourced.
To date there has been considerable research into the reasons why
people donate organs, the problems that families face when asked to
donate and the problems health professionals face in asking families.
Findings suggest that the solution to an inadequate supply of organs is
to educate the population in order that individuals better understand
the medical procedures involved, the accuracy of death determination
measures, and the opportunity that they might have to offer the ‘gift of
life’ to another human being after their own death.
The imagery that is used is powerful indeed, yet, ironically perhaps,
it relies on emotional triggers to encourage people to make (seemingly)
rational decisions within a biomedical framework of understanding. If
it is the case that one possible cause for reluctance to gift their organs
is that certain groups retain a ‘fuzzy’ collective memory of the abuse of
bodies in death, it is questionable as to whether expensive campaigns
alone will improve willingness to donate.
In some countries the solution to the shortfall of available organs
has been to introduce an opt out, rather than an opt in, system. Opt
out systems presume that citizens consent to the use of their organs
after death unless they have registered their unwillingness to do so.
Opt out systems may employ a ‘hard’ form as in Singapore and Austria
where relatives are not consulted about the procurement of organs, or
a ‘soft’ form as in Spain and Sweden where the views of relatives are
taken into account. Interestingly, in the context of the discussion here,
a hard system of opt out was introduced in Brazil in 1997 but had to
be rescinded in 1998 amidst popular anger and accusations of ‘body
snatching’ (DHS, 2008). In Singapore anecdotes abound of relatives’
anger and distress when organs are removed without their permission,
and in Spain, where a soft system is used, the Chief Medical Officer is
adamant that the increased rate of organ donation has not been achieved
as a consequence of the system but because other structures have been
put into place (DHS, 2008).
These observations suggest that a wider issue is at stake here, and one
that has to be understood in the context of emotional attachment to the
body of a loved one.
As Moloney and Walker argue, ‘it is the reality of organ donation and
transplantation in the non-medical world that is crucial to understanding
the donation dilemma’ (2002, p. 300). The dead body continues to hold
meaning for families and loved ones. Kellehear (2008) argues that dying
is a social relationship and this insight reinforces the importance of the
distinction between a medical determination of death and a social deter-
mination of death; in the latter case, life rarely ends when breathing or
brain function cease.
Conclusion
The problematic issues surrounding body and organ donation reflect

the complex intersection of discourses that construct and structure
values and practices surrounding death and dying, the dead body
and medical science. Medical advances in transplant technology have
changed the way in which we think about the inevitability of death.
Only a few decades ago, life-saving transplant technology was viewed
as miraculous; today a surgical operation to replace a failed organ
has almost become an expectation. Death can be delayed if enough
people are willing to donate their organs so that others might live.
According to this discourse surrounding life and death, the mind (or
self) and the body are separate and the body is perceived as a machine
that contains within it spare parts, precious life-giving organs that
are wasted if allowed to decay in the grave. Alongside this rational
discourse is a moral imperative to allow organs to be reused rather
than discarded.
Despite the campaigns to encourage people to donate organs the
continuing shortage of available organs for transplant points to the
existence of other discourses that reflect religious beliefs; the intrinsic
value of the integrity of the dead body; the social and personal meaning
that the body holds for the loved ones of the deceased; the lack of
congruity between medical and social determinations of death; and,
for vulnerable and marginalized groups in society, the fundamental
distrust of the medical profession triggered by the ‘fuzzy’ collective
memory of eighteenth and nineteenth century practices surrounding
dissection.
Although dissection is no longer viewed as a punishment, the discursive
transformation that separates the mind from the body is not complete
218 Glennys Howarth
as elements of the old discourse endure through collective memory

and continue to resist the power of medicine to define the nature and
significance of the human corpse. As Chadwick has argued, ‘rational
ethical arguments have failed to hold sway in thinking about the dead
[as exploitable objects] because of possible strong intuitions about the
respect due to the corpse’ (Chadwick, cited in Lawrence, 1998, p. 111).
In the context of body and organ donation the dominant rational
discourse of medical science which promotes the therapeutic benefit
of transplantation is countered by the intuitive distrust of the medical
profession among peoples from lower social classes and minority ethnic
groups who fear that their lives (like those of their forbears) might hold
lower social value.
Notes
1. Similar relationships were found (although not explored) in Titmuss’ (1970)
study of blood donors conducted in the 1960s.
2. There is commonly a hierarchy of value placed on different body parts and
these vary for cultural groups and change over time. So, for example, a high
value may be placed on the heart within groups that consider it to be the
source of life, or on the eyes for those who consider them the windows to the
soul.
3. Fowler (2005, p. 57) suggests that the newspaper has become the equivalent
of the story teller for the ‘modern, deskilled city-dweller’; an argument that
complements Moloney and Walker’s (2002) analysis of the construction of
social representations of organ donation within the media.
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11
Digital Objects of the Dead:
Negotiating Electronic Remains
Margaret Gibson
Introduction
Dominant ideas of the way groups and individuals should respond to a

loss are socially constructed, and a number of scholars have pointed out
this constructed nature of grief and mourning, suggesting that ‘human
response to loss is not genetically determined but culturally learned’
(DeSpelder and Strickland, 1999, p. 96). Doka and Martin (2002, p. 339)
emphasise the importance of culture in constructing grief and mourning,
arguing that ‘culture affects more than simply the expression of grief’,
but also impacts on ‘patterns of attachments, defining the meaning of
different losses, influencing who one mourns as well as the intensity of
that grief’.
Culture, of course, can be defined a variety of ways. Adhering to a
definition of culture as a ‘whole way of life’ (Williams, 1977, p. 13), tech-
nology is inherently part of culture – and technological changes can
affect collective meanings tied to loss and reconfigure practices of grief
and mourning. This chapter adopts a social constructionist perspec-
tive to explore, in an age of new digital media, meanings and practices
of mourning and responses to bereavement and, more specifically,
changing conceptions of hierarchy, space, privacy and property that are
directly linked to the specific context of mourning in a digital age.
Bereavement transforms and reveals the significance of material
forms of identity and memory of the deceased person. While responses
to the personal and household possessions of the dead vary culturally
and historically (sometimes they are destroyed and taken out of circu-
lation) they can remain significant to individual, family and commu-
nity responses to bereavement and decisions about what matters and
for whom in terms of custodianship, distribution and disposal (Hallam
221
222 Margaret Gibson
and Hockey, 2001; Gibson, 2008; Hockey et al., 2010). In an age of

technological mediation and creation of biography through electronic
media these diverse material remainders of mourning and memoriali-
sation exist as potential legacies of bereavement. It is through social
networking sites, emails, YouTube videos, photo sharing sites, and blogs
that individuals create their digital traces (Bowker, 2007) – repositories
of photos, thoughts, politics, feelings, relationships, consumer tastes,
and records of social events which document interactions both on and
off line. These new shared, public or semi-public ways of recording lives
and remembering the dead are different to private notes, letters, diaries
stored within the home with limited or non-circulatory access even to
significant others.1
On entering a home particularly in the context of Western societies
it is commonplace to see photographs on walls and in photo frames.
The home is a key site in which to display and embed the construc-
tion of memory and identity in recording signs of significant relation-
ships and life events through objects. The home is also the site of those
most intimate physical remainders of the dead such as clothing that can
offer olfactory and tactile reconnections that electronic objects do not
afford. For example, when evaluating material remainders, the paper
upon which a note is written can be valuable for its very tactility and
the sense that it carries the body trace of the deceased. This is a form of
value over and above the narrative/message and voice inscribed upon
the written note. Digital media operate through less tangible concepts
of space signified by the concept of virtual space, and the location and
housing of digital objects are often multiple. Digital objects are ‘housed’
on computers or phones (both stationary and mobile) and exist on
websites in an information and identity sharing social market. Digital
objects of the dead are thus multi-locational and despatialised materiali-
ties able to be dispersed/uploaded through communication networks/
devices within seconds of time. This can and, as this chapter argues,
does give rise to tensions between the collective value and meaning of
online mourning – particularly on social media sites – and more indi-
vidual uses and responses to mediated mourning for the bereaved in the
short and long term.
The status of digital media, particularly when it is located on websites
and dispersed through ‘network sociality’ (Wittel, 2001)2 displaces phys-
ical conceptions of property as concrete, tangible things located in the
private sphere within demarcated spatial boundaries. Electronic media
complicate the binaries and boundaries of public and private, troubling
images of discrete subjects linked to physically bounded forms of privacy
Digital Objects of the Dead 223
and property. This chapter argues that possessive boundaries between

what is mine and what is yours, and identity boundaries between where
I and you begin and end are complicated by the multi-authored nature
of the online social network. Social networking sites such as Facebook
are built around values of sharing in the activity of building one’s digital
profile-archive of photo memories, posts, blogs, emoticons (for example
thumbs up, smiley face), music files, and video clips through the input
of others. The possessive individual seeing and laying claim to the
boundaries of his/her property is not an image befitting the distribu-
tive production and sharing of social networking activity. However, the
social networking value of sharing may not always translate as a contin-
uing value in the event of death.
This chapter begins by situating social network sites, and goes on to
explore issues such as hierarchy, space, privacy and property in a context
of online mourning through the concepts of continuing bonds and
decentralised mourning. Through the analysis of a BBC online docu-
mentary of a deceased Facebook user (Danzico, 2012), this chapter illus-
trates the complexity of negotiating electronic remains by arguing that
digital remains cannot be easily claimed back into a private possessive
sphere of ownership and decision making when they were created out
of collective authorship and a mode of distribution. In other words,
before people die they are always already distributing themselves into
the digital and electronic lives and archives of others – family, friends,
acquaintances and even strangers. This chapter presents competing argu-
ments about the value and function of digital remains in relationships
that are inside and outside familial bonds (as continuing bonds) and the
context and spaces of private life. More specifically, this chapter raises
questions about whose continuing bond with a deceased person matters
and for whom in regard to the ongoing life of a social networking profile
page or memorial page.
Social networking sites: Facebook
Social networking sites such as Facebook are commercial entities storing,

profiling and selling information about users for the purposes of targeted
e-marketing. Facebook is currently the largest online social network in the
world reaching one billion active users by early September 2012 (Vance,
2012). On 17 May 2012 it was floated on the stock market cementing
itself as a major commercial entity in which information is its value for
investors. In terms of commercial law, Facebook shareholders own the
corporate entity and founder Mark Zuckerberg is the largest. In meshing
224 Margaret Gibson
commercial interests and investments with social ones, entities such as

Facebook are able to make a commercial gain from people’s social goals
and investments. And as users put their lives online, building archives
that are biographical repositories extending potentially for years, a high
level of social and personal value creation accrues. Facebook has two
basic consumer groups – those using Facebook for marketing commer-
cial goods and services and those using Facebook for social/personal
interaction and networking. These users inevitably overlap and cross-
reference each other.
The social media culture of self-generating documentation, particu-
larly in relation to social networking profiles and their archives has
consequences for death and bereavement and Facebook had to quickly
work out what to do when their users die. Managing this transition
from living to deceased is not something that social networking corpo-
rations anticipated as a feature of their social and corporate purpose,
and the creation of policy and governance quickly emerged. Families
of deceased Facebook users or executors of wills are required to nego-
tiate with Facebook to secure a digital archive and to transfer a loved
one’s profile to deceased ex-user with or without a memorial page.
Facebook pages can also be deleted at the request of recognised kin.
These processes require a degree of bureaucratic formalisation where a
copy of a birth or death certificate issued by the State (or other statutory
authority) becomes the document of proof.3 This also means that like
the State, Facebook has an archive of birth and death certificates. The
State and the corporate social networking sector of Facebook are both
mediating the social transition from social life to social death or digital
afterlife, governing their subjects/users by controlling and demanding
information in the process.
Continuing bonds
Social networking sites enable the dead to remain within the commu-
nicative network of the living as digital social presences (Walter et Al.,
2011–2012, p. 17) and while this is potentially valuable it also raises
questions about the work of mourning when there are a variety of rela-
tionships and levels of connectedness within a social network. In most
social network profile pages there will be a mixture of high, middle,
low and negligible levels of intimacy and friendship between members
of that network. And as such when someone in a social network dies
one would expect different levels of intensity of grieving with some
qualifying as bereaved within a spectrum of relationships with their
emotional levels of attachment, while others are more removed in being

saddened or sympathetically affected to varying degrees. Robson and
Walter’s (2012) concept of hierarchies of loss offers a valuable tool for
grief research particularly in the age of the social network where users
may not understand or respect boundaries of intimacy and where hier-
archies are flattened out by the network platform and/or the way it is
used (Marwick and Ellison, 2012, p. 379). How, when and who posts
messages about a death event, feelings of grief, sadness and remembrance
is generally not hierarchically organised within social networks which
means that family and friends are on an equal playing field (or platform)
to other members in the same network.4 Robson and Walter consider
the kinds of injustices that would occur if grief was always legitimated
for everyone in equal measure regardless of the relationship bond and
where the nature of the loss itself was relativised (Robson and Walter,
2012–2013). Bereavement means the experience of deprivation and loss
(Moller, 1996, pp. 108–109) and ‘grief is the primarily emotional reac-
tion to the loss of a loved one’ (Stroebe and Schut, 1998, p. 7). Someone
who is bereaved and grieving for a deceased person undergoes a loss of
self-identity (Marris, 1974, p. 33; Parkes, 1972, 1998; Seale, 1998, p. 57;
Walter, 1996, 1997). The death of others removes the reciprocity of self-
recognition – no longer able to consciously confirm our being in world
the deceased mortalise ourselves once living through them.
The question of who qualifies as bereaved at the level of lived experi-
ence and in whose eyes is problematic when, as Doka (1989) argues,
grief can be disenfranchised for relationships socially stigmatised or not
recognised legally, socially and/or within families. At the same time,
there are many complexities of biography and relationship bonds both
within families and friendship networks. The question of the psychical
impact of a death on the ego regardless of whether they are family,
friends or lovers is central to gauging the impact of a death. In the
process of mourning the bereaved are propelled internally and exter-
nally into renegotiating their sense of self as they face a future deprived
of physical contact, conversation, and memory making. The biograph-
ical and embodied specificities of bereavement are key to understanding
the nature of a loss – the difference between a parent losing a child, a
sibling losing a brother or sister, a spouse losing their partner, a friend
losing a close friend – all of these and more constitute very specific rela-
tionship bonds that are linked to biography, age factors, stages of the life
course, and the circumstances of a death are another impacting factor.
Furthermore, it can’t be assumed that all family members are affected by
the death of a family member in equal measure and at a higher level of
226 Margaret Gibson
impact than close, intimate friends. The nature of the bond itself and
emotional depth of attachment rather than simply the fact of kinship,
creates a more complex experience of grief.
In grief and bereavement research, emerging particularly from clinical
studies, the concept of continuing bonds asserts the value of ongoing
attachment to the deceased. In many ways this concept, as Walter et al.
(2011–2012, p. 292) note, has become somewhat fashionable in contem-
porary grief research. As a concept, continuing bonds has emerged to
counteract a previous Western-centric doctrine of ‘healthy’ grieving
where detachment from the dead and some end stage to grieving –
closure – is reached.5 Freud’s concept of de-cathexis has been central
to this model where emotional energy is gradually withdrawn from the
loved one and, over time, invested elsewhere. This model of healthy
grieving is mostly located with early psychoanalytic thought, particu-
larly Freud (1957) and later Bowlby (1980), and is also commonly associ-
ated with Elizabeth Kubler-Ross (1970) and her ethnography of the grief
work of the dying. While grieving in the context of bereavement does
entail recognition of a loss, adjustments to self-identity, households and
lifestyles, a zero sum of grief is a normative fantasy rather than lived
reality. In continuing bonds theory remaining attached to the dead
does not necessarily block mourning, that is, recognising the dead as
dead and working through this reality, but may be a way of successfully
adapting to loss and absence.
Social media have made visible the desire to remain attached to the
deceased in shared, semi-public ways and hence, allowed for alterna-
tive constructions of ‘normal’ or ‘healthy’ grieving to emerge. At the
same time, the digital remains of the dead as locus and cipher for shared
grieving and I would add too sharing the dead potentially presents its
own dilemmas. The bereaved might find it painful as well as comforting
to see messages about their loved ones posted in social media of which
they are a part. While family as a legally identified set of relation-
ships is generally privileged as the core relationships of bereavement,
as suggested already, close friends may also be bereaved in deep and
significant ways. However, unlike legally recognised kinship, friends,
unless they are executors of wills and estates, lack the legal authority
to determine if or when a social networking profile or memorial page
will be maintained into the future or deleted. This question of if or how
long a Facebook page should continue has been raised in articles by
Walker (2011) and Walter et al. (2011–2012), both suggesting the need
for protocols or guidelines. The fact that social networking profiles are
not discrete entities means that grieving through a Facebook profile (as
one social media example) is diverse in terms of relationships to the

deceased, histories of that relationship, levels and effects of grief.
Decentralising mourning and its authorship

through the social network
Social networking culture and online communities have created a DIY

documentary mourning culture where direct address to the dead is often
an observable feature. de Vries and Rutherford (2004) in their early study
of cyber-memorials note this feature as have Carroll and Landry (2010),
Brubaker and Vertesi (2011), and Kaset (2009, 2012) in their specific studies
of Myspace and Facebook. Rather than assuming that the dead can access
the inner mind of the living or bear witness to their lives without tech-
nological or communicative mediation, Kaset argues that the bereaved
see the externalisation of thoughts and emotions through narrative as
pivotal in enabling the deceased’s access to the living. Facebook is then
a medium for an ongoing personal relationship where conversational
writing becomes the means through which the dead are made aware of
the emotions of the living and kept up-to-date about what is going on
in their lives (Brubaker and Vertesi, 2010; de Vries and Rutherford, 2004;
Kaset, 2012). Through this practice the dead are kept on ‘the inside’
rather than ‘the outside’ of life and a social bond is maintained.
Writing on a deceased Facebook user’s wall or their memorialised
account is an example of externalising practices where a social, inscrip-
tional relationship to the dead supplements an internal, inner private
conversation leaving no socially shared, visible and readable trace. Of
course the internal world of thought and feeling can also dwell secretly
in what is externalised. The externalising and recording of talking to
the dead is valuable in making common knowledge and normalising
what is documented in empirical grief research as a common practice
in bereavement (Klass, 1988; Roberts, 2004; Rosenblatt, 2000; Shuchter
and Zisook, 1993; Silverman and Nickman, 1996). As Walter et al. (2011–
2012, p. 293) write:
... people talk to the dead offline, and receive advice from them, not
least in cemeteries. What is new about Web 2.0 conversation with
the dead is that they are not private, there is no embarrassment
about speaking to the dead in the presence of an audience, nor about
speaking in a way that presumes the dead are listening. It may be that
writing online feels private, almost like a confessional, and yet there
is in fact a wider audience.
228 Margaret Gibson
Talking to the dead is a way of continuing an attachment while enabling

the bereaved to adjust to the reality of physical and communicative
absence in their day-to-day life (Kaset, 2012). By talking to the dead
online as a socially shared activity, the modern experience of hidden
and privatised grief is opened up to demystification. Indeed in face-to-
face social settings and localised place-based relationships, grieving as
expressive and communicative practice is often disenfranchised beyond
a period of time after bereavement. In his research into ‘disenfranchised
grief’, Doka (1989) suggests that it is grief more than death itself that
is the main taboo in modern life and the bereaved often experience
social regulation in terms of which relationships will be recognised as
grieve-able, as well as how, when and for how long grief is acknowledged
in conversation with friends, colleagues and co-workers. This in turn
creates a culture of self-regulatory practices and performances prohibi-
tive against signs of sadness and longing. This positions online commu-
nities as valuable places/sites in which to articulate and authorised grief
experience (Carroll and Landry, 2010; Degroot, 2012; Getty et al., 2011;
Kaset, 2009, 2012; Moss, 2004; Roberts and Vidal, 1999–2000; Walter
et al., 2011–2012). It enables bereaved family and friends to gain social
network support beyond the potential normative limitations of face-to-
face relationship contexts. At the same time, as this chapter suggests,
digital media may present its own challenges: ‘The Internet may not
only offer support for bereaved persons, it may be a source of grief’
(Doka, 2001, p. 33).
Negotiating digital remains: the case of

Janna Moore Morin
While social media may free hidden sorrow they are still overseen
and regulated by corporations and institutions. There are States in the
USA developing laws to protect and assist families in gaining access
and control over digital property where passwords and usernames are
unknown. Through law, some States in the USA are trying to over-
ride the policies of individual social media corporations with regard to
deceased users’ accounts with a blanket law that gives authority to the
next of kin. The BBC online video news documentary analysed in this
chapter (the video was posted on their site 31 January 2012) focuses
on the State of Nebraska and involves family members wishing to have
their sister’s Facebook page deleted. The senate in the State of Nebraska
prepared a Bill giving families legal authority to delete Facebook, Twitter
and other online documents of their deceased loved one’s digital life.6
The BBC online news documentary involves interviews with senators

and lawyers but its focus is the sister of a deceased woman by the name
of Janna Moore Morin. The sister Melissa and her brother want Janna’s
Facebook page deleted, as it is now two years since she died. The docu-
mentary doesn’t explore why it is particularly difficult for the family to
close down the Facebook account so there are some unanswered ques-
tions. The deceased sister was married six months before she died so the
next of kin is her husband whose point of view is absent from the news
documentary.
During the BBC interview the sister Melissa is sitting in a room with
her young daughter, going through photograph albums, pointing out
pictures of her deceased sister/aunt. The camera documents the setting
by zooming in on the framed photographs that visibly construct the
continued presence of Janna as a family member living representa-
tionally within the house. The video documentary sets up a scene of
the work of remembering that is centred on the physical object of the
photograph album and other photographs in the room. Part of the news
story is the sister’s preference for photograph albums and not the photo-
graphs she sees of her sister ‘popping up’ unpredictably on Facebook.
The photograph albums are physical, representational objects located in
the space of her home as a context of close intimate relationships with
tactile possibilities to the objects themselves. The household photo-
graphs albums operate under Melissa’s control as she chooses when to
open them and with whom she might share a process of storytelling
and remembrance. Melissa is regenerating or perhaps more accurately
constructing her daughter’s memories of her aunt as she talks about
her sister’s wedding documented in the photograph album. In the first
scene/shot of Melissa she is standing in the living room and she speaks
to camera saying:
I have a sister, she is five years younger than me and we were very
close. She is just a wonderful person ... .And she had just gotten
married, two months prior to her accident [she was killed by a snow
plough] ... .Janna had a Facebook page which she was very active on
and she was always updating and so after her accident there were
just hundreds of people who signed on and are just always leaving
messages ... everyone is always saying [and we are seeing the Facebook
posts at this point, able to read them as Melissa reads them to camera]
‘miss you Janna’, ‘How time flies, it was 2 years since you were taken
away from us, we miss you and love you’. The only issue we have
now is that her picture is always popping up and her picture is always
230 Margaret Gibson
in your friends and after a while [sigh] it just gets to be enough. You
get to the point where you’ve accepted things and you want to see
pictures when you want to see them not just whenever they pop
up ... And it’s got to the point that it’s almost a deterrent to going
online or going on Facebook. I think one of my brothers was talking
about how he never even uses his account because he doesn’t like to
be reminded every time he goes online. (http://www.bbc.co.uk/news/
magazine-16801154)
Janna is digitally alive in the social network as a subject of mourning

and remembrance. As discussed earlier, Janna’s Facebook page like many
others is used as a way of directly speaking to her. The sister and other
family members (although we do not hear from them directly) feel that
Facebook, and by extension their deceased sister’s social network, are
determining when they see a picture of her, how and in what ways,
they will be reminded of her. It is an example of ‘automated mourning’
(Gibson, 2012) through the social network where communication
mediums and devices decentralise control of the symbolic and linguistic
rituals of mourning and remembering.7 Automated mourning also refers
to the integration and normalisation of information communication
technologies (ICTs) in human social behaviour. And younger genera-
tions are particularly immersed in new communication technologies
and social media as they connect, communicate, and document a wide
range of life experiences and events.
The Facebook page can be conceptualised as a type of transitional
object moving from the status of an object of the living subject, that
is, an active social project, to an object of the dead – an active social
project for the grieving. It maps and enables different stages of grief to
be enacted as discourse and documented/archived. In the BBC online
video news report, the sister and brother want to let go of what has
become an unwanted electronic object of the dead. If it was a phys-
ical object in their possession they could dispose of it. But it is an elec-
tronic object – its materiality is non-physical, non-tactile, existing in
virtual form on a server. In seeking to delete this Facebook profile from
the server, the family wants to let go of something, but that doesn’t
necessarily accord with the wishes of friends or include the consent of
others on the network where Janna continues to be actively remem-
bered within the trajectories of people’s lives. And this is where one
can imagine discord both between and within family, and between and
within friendships because a Facebook page is not a discrete entity in
the way we configure property in its material form. In this case, the
family, after two years of bereavement doesn’t want the Facebook page
to continue. For those who are not bereaved or much less symptomati-
cally bereaved the difficult work of mourning within a two-year period
means something else entirely. In other words, two years as a factual
statement of time and two years as the lived time of mourning are quite
different things. Furthermore when people in an online social network
post messages to the deceased such as ‘miss you’, ‘can’t believe it is two
years since you are gone’, these messages go beyond their addressee and
a private dyad of one-to-one line of communication as they are read and
experienced by members of the online social network.
In terms of Facebook functions, the bereaved sister Melissa (and also
her brother) has the choice to delete or un-friend their deceased sister
Janna thus blocking RSS feeds eliminating the problem of unwanted pop
up photographs and messages. However, such an action is not simply
pragmatic but carries symbolic weight – it is severing a tie in the forum
of a social network between kin who are deeply connected emotionally
and biographically. But whose relationship to the dead determines the
right to decide whether a Facebook page continues? Legally, next of kin
has authority but arguably Facebook has been historically conceived and
used as a social network of peers/friends where family do not necessarily
have any more privileged status even when they have Facebook profiles
and share many of the same social networks. However, this constitutes a
conservative interpretation fixing the meaning of an object according to
its conceptual origin. Objects are not fixed in their purpose and meaning
but dynamically constructed over time according to their use, circula-
tion and exchange. How online accounts and electronic traces of the
dead are configured in decision-making rights is complex with potential
contestation by competing parties who may value such media objects
quite differently. This question of the disenfranchisement of friends by
the legal right of family to delete a Facebook profile or memorial page
is something that Kaset’s research explored. Some of her interviewees
expressed a deep sense of loss (as if losing the deceased all over again) if
their electronic access point to the deceased were removed by deletion
(Kaset, 2012, p. 66). But in this loss by deletion is also a self-loss whether
or not it is said or acknowledged.
Transitional objects
While Kaset conceptualises Facebook as a medium and conduit of
communication between the living and the dead, Facebook and online
memorials can also be viewed as transitional objects enabling the
bereaved to negotiate the space between presence and absence, here
232 Margaret Gibson
and not here. As conceptualised by D. W. Winnicott (2005), transitional

objects have a degree of magical power in their ability to assuage anxi-
eties, providing comfort and security when facing temporary or more
permanent periods of separation from significant others. In Winnicott’s
analysis transitional objects are not static but transform as the child
negotiates the reality of the world at large, which they gradually enter as
social actors. As objects transition with the child’s emotional and cogni-
tive development they too transition into what Winnicott (2005, p. 7)
calls a limbo state where they are neither forgotten nor mourned but
have lost their meaning and direct purpose for the child. However, like
the objects that remain when a person dies, the transitional object of
childhood can mean something else for parents or guardians who may
invest it with meaning as a memory artifact of their child’s passage from
early childhood with all its magic and phantasy. For parents it may be
an object holding the past of their child’s passage from early childhood.
The transitional object has relational complexity in its meaning and
negotiation over time and Winnicott’s seminal work provides insights
into the work of mourning through material things (Gibson, 2004).
In the context of bereavement, transitional objects, particularly those
intimately connected to the body and memories of the deceased, are
often important in the early shock period of grief providing comfort
and some semblance of identity and narrative continuity (Gibson, 2004,
2008). As Gibson (2004, p. 288) argues, transitional objects often have
a double function enabling the bereaved to hold on and let go of the
deceased at one and the same time. However, transitional objects not
only transition the grieving through their loss they also transition in
meaning through their use. Once their power to negotiate the psychic
space between holding on and letting go passes, they are often put away
in cupboards ‘as if’ putting the dead to rest (Gibson, 2004, 2008). The
bereaved, as Walter (1997, p. 263) importantly argues, often need to let
go before they can find a way to hold on: ‘Bereaved people may search
and cling before finally letting go; but it is now coming to be recognised
that it may also be necessary to let go before there can be a genuine and
lasting keeping hold.’ The action of letting go can at the same time be a
way of holding on through processing emotion and meaning through
material things. But how does one put away a networked object that was
always in some sense shared? Furthermore, how does one put away a
networked object where the dead are kept electronically alive or at least
in some liminal state? In the news documentary, the Facebook page may
not have functioned as a particularly important object or even a transi-
tional object for family members who have access to more intimate and
privately located material remainders which they negotiate in their own

time and on their own terms. The Facebook page now functions as an
unwanted electronic object for essentially other people’s remembering
of their sister which they no longer wish to share in as members of that
same social network. But in letting go of Janna’s profile by an act of
deletion they would be letting go on behalf of others who may not wish
such action. Arguably the sister and brother constitute a special class of
bereaved people who suffer a loss and while other people in the Facebook
network may also be bereaved by their sister Janna’s death, clearly there
are different relationships and degrees of bereavement and not everyone
would be bereaved as such or bereaved in a lifelong way. Nevertheless,
one could argue that a Facebook page is not simply an object or material
remainder of the dead once its user is deceased because it has a history
of intertwining with the Facebook pages/archives of the living. Social
networking sites by their very construction contest clear-cut category
formations and boundaries as they put into question divisions between
mine and yours, alive and dead, subject and object.
Conclusion
New media have altered practices of and responses to loss and bereave-
ment, and have put issues like hierarchy, privacy, and privacy and prop-
erty on the research agenda of thanatology. This chapter has sought to
explore these issues and has illustrated the complexity of negotiating
electronic remains through an analysis of a BBC online documentary of
a deceased Facebook user.
It has been argued that technologically mediated death and mourning
may at times require interventions on the part of the bereaved to decide
if or when someone will transition into electronic death within the social
network. There are clear parallels with medical technology and the deci-
sion to intervene in similar liminal statuses of neither alive nor dead but
somewhere in between. The decision to turn off life support machines
in hospitals is a ritualised rite of passage where saying goodbye and
mourning by the bedside is a common scene. Perhaps this rite of passage
has to be invented as deceased members of social networks are deleted
from future automated presence in organised ways which alert people
and allow them time to copy valuable digital media and say goodbye
before electronic deletion. However, this ritual action is complicated
when social networking profiles may have quite different functions in
a network of continuing bonds. The democratisation of loss in a social
network is also problematic in flattening out hierarchies of bereavement
234 Margaret Gibson
and boundaries of intimacy. However, the continuing bond with the

deceased that family members may maintain via access to physical
objects of mourning, sites and places of memory may be less available
to others who rely on network connections or web memorials to support
their visual, sound, and narrative memories via its digital repository. And
while bereaved family members may have physical objects to enable them
to continue their bond with the dead, seek contact with body memories,
and mediate their emotional states, other family members and friends
(and particularly younger cohorts) geographically near and distant, may
mainly (and one anticipates increasingly) have digital memory objects,
located on servers and mapped by a web of connections and shared media.
While the deceased are kept ‘inside’ the social network via conversational
posts in which they are the addressee, they are not ‘sharing’ as conscious
beings engaged in the reciprocity of social media. This absence of reci-
procity positions them as the shared – the cipher and space of projection
for the living keeping themselves alive to the dead.
A Facebook profile or memorial page is not a simple object of the
dead as it is not a spatially discrete thing separated out and placed in
relation to a single subject who is both owner and author. Social media
objects are collectively made and dispersed and therefore go beyond
the paradigm of bounded individual property. They also transcend the
value and meaning that individuals may attach to these digital lega-
cies as they are always already collective forms. Digital objects of the
dead lack the integrity of a physical form and boundary and the kind
of relation and intimacy that can be had when this is the case. An elec-
tronic object is already a corporeal displacement from the embodied and
lived memory that attaches to tangible things located in physical spaces.
One can share these physical objects in the event of bereavement by
giving them to others with or without their identity attached to them.
For example, giving a shirt or dress to a family member or friend with
the knowledge that this once belonged to the deceased contrasting to
giving away clothing to charity where the identity of the deceased is
detached from the object in the act of giving. The mobility of physical
objects – going into cupboards, to other houses and lives gives a tempo-
rality and spatiality to grief processing through things. It also means
that the bereaved can move through their grief by decision-making
processes about what to do with the personal and household posses-
sions of the dead. Digital remains can be mobile too as people search for
email, social networking posts, digital photographs, and other online
data of loved ones for downloading, copying and sharing. Looking at a
digital image on a phone or scanning the social networking archive of
a deceased friend or family member is very different to picking up an

object, holding it, smelling it, or engaging in other sensate and corpo-
really embedded experiences. However, the images and stories that are
part of online biographical traces in social media do enable the bereaved
to remember the people, places and events that they record and capture.
But these ways of sharing the remains of the dead are not the same and
part of sharing digital remains within an online social network is about
keeping them accessible and negotiable within that network by non-
deletion. In terms of digital remains perhaps the bereaved can choose to
share their legal decision-making rights about electronic remains in the
spirit of the distributive economy of social media.
Notes
1. Upon someone’s death these objects are often encountered as part of house-
hold contents and the sorting through process. And it is at this time that
these very kinds of personal items are read and discoveries made about the
biography of a family member, friend, or lover.
2. Wittel’s concept, network sociality, captures the integrations of modern life
where work and play, family, friends, colleagues, acquaintances, and strangers
combine, move and feed into complex webs of both social and economic
connectivity via new communication technologies.
3. ‘How do I submit a special request for a deceased user’s account on the site?’‘We
will process certain special requests for verified immediate family members,
including requests to remove a loved one’s account. This will completely
remove the profile (timeline) and all associated content from Facebook, so no
one can view it’ (https://www.facebook.com/help/265593773453448).
4. It is possible on Facebook and other social networking sites to create different
cohorts and even set up a hierarchy of friendship relationships.
5. For a detailed literature review of how the concept of healthy grieving associ-
ated with detachment from the dead has been challenged and transformed see
Jeanne W. Rothaupt and Kent Becker’s paper ‘A Literature Review of Western
Bereavement: From Decathecting to Continuing Bonds’, The Family Journal,
2007, 15(6): 6–15.
6. Advice given by one of the Senators working on the Bill is that people should
consider posting or tweeting their wishes about what they would like to happen
to their digital data when they die. http://legislature.omaha.com/2012/01/30/
nebraska-legislature-what-happens-to-your-facebook-page-when-you-die/
7. As a larger concept automated mourning includes computer generated
mourning practices in which sites offer services to automate stored messages
from the deceased which can include releasing information about usernames
and passwords, online SNSs and gaming accounts, birthday messages and
anniversary messages to loved ones into the future. A whole range of messages
can be stored for future release in the short and long term thus giving the dead
posthumous agency as social actors.
236 Margaret Gibson
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OPEN
12
‘This In-Between’: How Families
Talk about Death in Relation to
Severe Brain Injury and Disorders
of Consciousness
Celia Kitzinger and Jenny Kitzinger
Introduction
It’s almost like living with a dead person. Some people say, ‘you’ve
still got her’. No I haven’t. (Mother of a daughter in a permanent
vegetative state, caring for her at home.)
I only thought in terms of life and death ... not this, this in-between.
(Father of a son, who had been in a minimal conscious state.)
And I’d thought of every single possibility. But I hadn’t thought of
this one. Because I didn’t even know it existed. (Sister of a woman in
a permanent vegetative state.)
These comments encapsulate some common themes in how people

describe having a severely brain-injured relative in a coma-like condi-
tion, medically known as a ‘disorder of consciousness’. In the past it was
highly unusual for such individuals to survive very long after the initial
trauma that caused their injury. However, the emergence of modern
medical technologies, and how they are deployed, has led to the creation
of new long-term conditions including the ‘vegetative state’ (in which
the patient shows no awareness at all) and the ‘minimally conscious
state’ (in which the the patient displays some intermittent and minimal
awareness). These conditions are modern phenomena – the vegetative
diagnostic category was first created in the early 1970s (Jennett and
Plum, 1972) and the ‘minimally conscious state’ [MCS] was only defined
in 2002 (Giacino et al., 2002). Patients with disorders of consciousness
239
240 Celia Kitzinger and Jenny Kitzinger
disrupt previous ways of understanding life. The family may experience

their vegetative or minimally conscious relative as ‘present but absent’,
‘living, but dead’, making comments such as ‘this is no life’ and ‘my son
is gone’ – and experiencing a sense of loss and grief that may be ‘like a
death’, although not a death.
In analysing families’ talk about death in relation to severe brain injury
and disorders of consciousness, this chapter combines a social construc-
tionist approach – addressing the way new medical technologies generate
dominant definitions of death and dying – with a social constructivist
approach – focusing on the agency of relatives in generating constructions
of their relative in relation to the vegetative and minimally conscious
diagnoses. We explore what family members’ accounts tell us about ‘ordi-
nary understandings’ of death, the disruption of such understandings
brought about by the use of medical technologies which ‘rescue’ and
sustain physiological life with no (or minimal) consciousness and the
ways in which family members negotiate such disruptions.
The social construction of ‘the vegetative state’
Death is sometimes seen to defy social constructionist/ivist theo-

rising – death is the ultimate, non-negotiable, purely natural, ‘fact of
life’ (Carpentier and Van Brussel, 2012). However, thanatologists have
detailed the changing social nature of death, who ‘owns’ death and
where it occurs (Illich, 1975; Aries, 1981) as well as highlighting how
new ‘life-sustaining’ technologies have led to new definitions of death
and how the space between life and death is historically and socially
constructed and contested (Lock, 2002). ‘Brain death’ is one obvious,
and well analysed, example but the most profound disability that can
result from surviving severe brain injury but which does not (currently)
result in a diagnosis of death is the ‘vegetative state’ (sometimes now
called ‘wakeful unresponsiveness’ – ‘wakeful’ because their eyes open,
even if the patient can see nothing). It is this condition and the more
‘borderline’ condition of ‘minimally conscious state’, and more specifi-
cally the construction of these conditions in terms of ‘in-between’ states
of being, that is the focus of this chapter.
The vegetative and the minimally conscious state conditions cannot
be isolated from a specific medical–material context. Increasing numbers
of people are now surviving injuries caused by, for example, a car crash,
sporting accident, assault, a cardiac arrest or an illness such as viral
encephalitis (surviving both in the immediate aftermath and for years or
decades afterwards). This is linked to late twentieth and early twenty-first
‘This In-Between’ 241
century developments in medical technologies (including resuscitation,

artificial ventilation and the delivery of artificial hydration and nutri-
tion), which – combined with particular sets of social and political imper-
atives – have helped to save lives and improve recovery for some, but at
the same time have ‘produced new neurological syndromes of severe,
and usually irreversible, cognitive and motor disabilities’ (Cranford,
2002, p. 129). Indeed, Kaufman and Morgan talk of new ‘technologi-
cally produced’ life forms – ‘liminal beings’ who ‘hover in an ambiguous
zone’ and ‘force a remapping of the notions of life, death, and person’,
throwing up new ethical and cultural debates (Kaufman and Morgan,
2005, p. 330). There is now a large body of clinical literature debating the
ethics of medical decision-making at the very borders of life (Abdennour
et al., 2007; Carter and Leuthner, 2003; Gillett et al., 2010; Honeybul
et al., 2011; Schaller and Kessler, 2006; Wilkinson and Savulescu, 2011).
There is also an emerging literature on the sociological significance of
these patients and their care (Bird-David and Israeli, 2010; Kaufman,
2003, Kaufman and Morgan, 2005; Kitzinger and Kitzinger, 2013). From
this, and related work on ‘brain death’ (Giacomini, 1997; Lock, 2002;
Kaufman and Morgan, 2005; Youngner et al., 1999), it is clear that profes-
sionals and patients’ families are often troubled by the ethics of ‘life-
sustaining’ interventions for such patients and find it hard to make sense
of patients who are neither fully alive nor unambiguously dead.
Alongside new medical technologies, allowing medical staff to keep
patients alive and (clinical) debates on life-sustaining interventions,
arose the urge to define the condition of the vegetative state – which
returns us to the constructed nature of death. From a (dominant)
biological paradigm, death is defined as the irreversible breakdown in
the functioning of the organism as a whole: in that paradigm brain-dead
patients are dead because they have lost consciousness and are machine-
dependent for functions such as breathing, but the patients in perma-
nently vegetative states [PVS] are alive because although they have lost
consciousness, they maintain integrated autonomic physiological func-
tions (albeit machine-dependent for nutrition and hydration). However,
critics point out that the dominant biological paradigm fails to capture
the totality and complexity of the phenomenon of ‘death’.
As Holland points out:
Death is one of a handful of most weighty phenomena. It would be

odd if concepts capturing such phenomena turn out to be simple
and, unsurprisingly, we find that concepts such as life, love and
liberty turn out to be complex, and their definitions contestable. But
in the biological account, the definition of death captures just one

very straightforward, universally applicable idea – irreversible loss of
organismic functioning – which is suspiciously simple. Conversely,
consider concepts that are non-contentiously purely biological, such
as the concepts of photosynthesis and osmosis; is it really plausible
that the concept of death is, like these, purely biological? (Holland,
2010, p. 112)
For the purposes of this chapter we are most interested in the obser-
vation by Holland that ‘whilst our ordinary understanding [of death]
accommodates the biological definition, it also includes the thought
that, for someone who has died, there will never again be anything it is
like to be that person’ (Holland, 2010, p. 109).
It comes as no surprise, then, that family members often rearticulate
and negotiate the notion of ‘consciousness’, which functions as a key
signifier in dominant biological and medical definitions of death. Indeed,
the situation is complicated by whether or not family members really
believe that consciousness is entirely absent even in the patient’s present
condition. Vegetative patients do not conform to the image of the ‘coma
patient’ so often displayed in the media – they often do not appear to be
unconscious in our usual understanding of what unconsciousness ‘looks
like’. Vegetative patients usually have spontaneous respiration and circu-
lation (they are not dependent on machines to breathe or to keep their
hearts beating) and they have sleep–wake cycles and while awake can
open their eyes and may look toward a loud sound or stare at a visitor
(medically called ‘visual fixation’). They also may withdraw from pain,
cry, smile, groan and have a grasp reflex (which a visitor may experi-
ence as hand holding). Such patients may sometimes even say isolated
words which, according to clinical experts, may reflect ‘the survival of
“islands” of cortex, which are no longer part of the coherent thalmo-cor-
tical system required to generate awareness’ (RCP, 2013, p. 5). Families,
however, may see such behaviours as evidence of awareness and ques-
tion clinical definitions. (For discussion of contestations around the diag-
nosis of consciousness see Nettleton et al., forthcoming.) This is further
complicated by recent findings from scientists using new techniques of
brain scanning that appear to detect brain activity in patients apparently
unable to display any other signs (for example unable to blink answers
to questions) (see Monti et al., 2010, and disputes about the representa-
tion of fMRI, e.g. Samuel and Kitzinger, 2013; Turner-Stokes et al., 2012).
Families may believe the person ‘is in there’ and responding to them, and
question the ability of experts at the bedside to detect this.
In addition it is widely recognised (by both clinicians and families)

that patients can be misdiagnosed as VS when in fact they are MCS
(Andrews et al., 1996) and families often fear the patient may even be
‘locked-in’ – fully conscious but unable to communicate in any way –
and there have been some examples of misdiagnosis in such cases too
(although this is much less likely). Distinguishing VS from MCS is
particularly challenging because, by its very definition, MCS is charac-
terised by inconsistency and MCS is also a continuum (for example some
patients display very, very minimal and very, very intermittent signs of
consciousness). The creation of the VS/MCS boundary therefore, on one
level, seeks to clarify the situation, but at the same time creates ‘a mirage
of certainty’ – a ‘diagnostic illusory’ – which ‘does little to quell the
confusions, anxieties, conundrums and conflicts experienced by rela-
tives, and some clinicians’ (Nettleton et al., forthcoming, p. 16).
Families’ understandings of their relative in a vegetative state are not
only connected to – often contestations of – biomedical definitions of
death and dying, but are also embedded in debates that go beyond the
medical and biological sphere. The ‘permanent vegetative state’ has
indeed a special significance and is often used as a ‘thought anchor’
in philosophical as well as theological theorising about life, death, and
personhood. Analysing the ontological status of the patient in PVS (with
irreversible, permanent loss of awareness of themselves or their envi-
ronment) is a useful endeavour for thinking through the philosophical
implications for treatment (Holland et al., 2014). However, as we will
show in this chapter, on another level this approach has limited use
for families facing the day-to-day challenges of having a loved one in
a disordered state of consciousness – trying to make sense of their own
feelings and experience, and encounters with current legislation and
practice as these play out over time and as the patient moves across
different diagnostic categories. This is because in many theoretical
accounts PVS is presented in a static way and imagined as an abstract
ideal, without an engagement with the medico-legal context in which
such states are created/emerge over the patient’s ‘pathway’ and discon-
nected from other states of disordered consciousness or what decisions
have to be made or what ‘recovery’ can mean. One key issue is that the
diagnosis of a disorder of consciousness is a process, not a one-off event –
the diagnosis of such a state as being ‘permanent’ is time dependent and
embedded in debates about when someone in a vegetative state can be
defined as having ‘irreversibly’ lost all capacity for consciousness (should
it be after months, a year, or years?) and what interventions and tests
should be tried (might another drug trial make a difference?). Guidelines
vary between countries. For example, in the US you can be defined as

being in a ‘permanent’ vegetative state after showing no consciousness
for three months after a ‘non traumatic injury’ (for example due to
oxygen deprivation), whereas in the UK that label can only be applied
after six months (RCP, 2013). In both countries patients can only be
labelled as PVS after a year if the cause of their injury is ‘traumatic’ (such
as due to a blow to the head). There are a few isolated examples of late
recovery from PVS and it is known that people may sometimes evolve
into full consciousness, after years or even decades in MCS (Fins et al.,
2007). Family members’ sense of the person as ‘alive’ or ‘dead’ will, in
part, play out against this understanding of when loss of consciousness is
‘irreversible’ – both according to the medics (depending on the country
in which they live) and their own understanding of the treatment given
and what the future holds.
Method
The research reported here is part of a larger ongoing study of family

experiences of decision making in connection with a severely brain-in-
jured relative. We have also interviewed professionals in the field. Ethical
approval was obtained from University of York and Cardiff University
ethics committees and all interviews were conducted by one or other
of the authors of this paper (both experienced in interviewing around
highly sensitive subjects). Family research participants were recruited
through advertising via support groups, websites and care homes asking
people to talk to us about the experiences of decision making. We also
recruited through our own social contacts (we have a severely brain-
injured sister),1 through contacts made after giving formal presenta-
tions about our research and via snowball sampling. Once we received
NHS ethics approval (from Berkshire Research Ethics Committee, REC
reference number: 12/SC/0495) we were also able to recruit via consult-
ants, although all interviews took place off NHS premises (generally in
people’s homes).
We interviewed a wide range of family members: adult children,
parents, sisters, brothers, spouses and partners of the brain-injured
person, as well as some other relatives involved in decision making (for
example stepfather and sister-in-law). Most people were interviewed
individually, but some asked to meet in pairs (for example a husband and
wife asked to be interviewed together, as did a mother and daughter). We
almost always conducted the interviews without other people present:
exceptions were one interview at which a young child was present and
another which took place in the same room as the PVS daughter of the
interviewee (who cared for her at home).
The interview schedule was deliberately wide-ranging, with open-
ended questions, prompts and follow-up questions employed to elicit
detailed responses but also to allow people to tell their own stories,
rather than adhering to a strict structure. The majority of interviews
lasted between 2 and 4 hours (with breaks). In this article we focus on
those parts of the interviews where participants implicitly or explicitly
reflect on their relatives status as alive or dead.
We have interviewed 51 family members – their injured family
member ranged from late teens to early sixties. Most of the brain injuries
were caused by either road traffic or sporting accidents and most were
traumatic rather than anoxic (oxygen deprivation) injuries. At the time
of interview, the brain-injured persons had generally been kept alive for
between two and ten years since the injury, and most had been diag-
nosed as ‘vegetative’ or ‘minimally conscious’ (although some had died,
and some had recovered full consciousness, albeit with profound and
multiple disabilities).
In addition, one interviewee reported the experience of having his
daughter diagnosed as ‘brain dead’ and ‘switched off’, and another –
interviewed because she had a relative who was vegetative – also reported
an experience of the brain death of another family member.
Interviews were fully transcribed and, following discussion between
the researchers, coded to identify themes and recurrent issues using a
qualitative analysis software package (Dedoose). Issues pertaining to
death which were attended to included: descriptions of ‘near death’ or
the patient having ‘died’ and been ‘reanimated’ (for example through
resuscitation), explicit or implicit accounts of the relationship between
the patient’s current existence and death, expressed views about life-sus-
taining treatment and future death, and discussion of actual or planned
funeral rituals. The authors analysed the data using thematic analysis
to identify patterns (themes) within data (Braun and Clarke, 2006) and
paid particular attention to diversity within the data and the ways in
which people spoke about the relationship between the body and the
soul/spirit/person and the terms they used to express ideas about life
and death, (‘existence’, ‘breathing’, ‘being’ or ‘free’, ‘at peace’, ‘passed
over’, ‘gone’). The data are replete with tensions, speculation and ambiv-
alences that are perhaps inevitable given the ways in which vegetative
(and minimally conscious) states may disrupt standard constructions of
life and death and the emotional complexity of family responses. In
the data discussed in the analysis here we have tried to capture some of
these tensions, and to highlight both the commonalities and the diver-
sity of responses as our interviewees grapple with the challenges they
confront.
In the analysis which follows we describe the reported experiences of
the families who talked to us, on their own terms, contextualising these
in relation to the medical, legal and ethical situations which they reflect
and constitute. All data have been anonymised. Names of people and
places are pseudonyms. (For full discussion on anonymising strategy see
Saunders et al., 2014.)
Findings
This chapter explores questions such as: when is someone ‘dead’ or

‘alive’? If someone has not died – why not? Should they be dead? What
do such states of ‘in-between’ mean for relationships? What would it
mean if they really did die – in terms of memory and commemoration?
When is someone ‘really dead’?

Two of our interviewees not only had experience of vegetative/mini-
mally conscious states, but also had experienced a relative with a diag-
nosis of brain death – and during the interview they talked about the
death of these relatives. Both described their somatically-maintained
brain-dead relative as having been in some sense present, at least as a
subject for ‘being with’ and saying goodbye to, even while accepting the
diagnosis. One, for example, described how her husband got to be ‘actu-
ally dead’ only after his ‘life support’ was switched off and describes how
important it was to be with him while he ‘died’.
Inga: I said, ‘oh yes, I want to be in there’, the girls said they wanted
to be. So they just removed the ventilator and he just lay there.
And you could see – he was still attached to the monitor and
you could see – I mean, I never realised it would take so long
for somebody to actually die in that situation.
Int: How long did it take?
Inga: Well, I just thought it’ll – his heart will stop, you know. And
the thing was, it started slowing down and we were all holding
him and everything. And then it sort of stopped and it flat
lined. And you know we thought, ‘Oh God, that’s it’. And then
it started again. And it kept doing this. So we didn’t know, we
kept thinking, ‘Oh, is he or isn’t he?’ Oh, it was awful, it was
absolutely horrible. It felt like it was about ten minutes. It was
probably maybe half that. But it was just horrendous, abso-

lutely horrendous. Sorry, I’m reliving it (tearful).
Int: I can understand that. Did you wish you hadn’t been there?
Inga: No, no. We had to be there. You know I couldn’t have left him
then.
Keith similarly talks about the rituals of saying goodbye to his brain-
dead daughter. He says she was ‘dead’ – ‘as far as they [the doctors] were
concerned’, but it is clear that for him she was not ‘gone’ until after the
machines were switched off.
Keith: It was global [brain injuries] in the end. It got worse and
worse. It sort of spread, the swelling became bigger [ ... ] She
was clinically dead once immediately the machine went off.
Int: The machine being the ventilator?
Keith: Yes [ ... ] We were told that it was hopeless, and it was their
opinion that the minute that they turned the vent off that
she would die. In fact she was dead as far as they were
concerned without the machine. So people just filed in, [ ... ]
to say their goodbyes and that was awful. [ ... ] And very soon
she was almost gone instantly there was just nothing there
when they did it.
These extracts confirm what previous research has demonstrated (Lock,

2002) – that ‘brain death’ is often not actually treated by relatives as
‘really dead’. In these scenarios the already brain-dead are ‘actually
dying’ (and take 5–10 mins to do it) or are only ‘gone’ after the venti-
lator is turned off. The recent Jahi McMath case offers a particularly
graphic case of a family’s refusal to accept that a brain-dead patient is
really ‘dead’ – and some media reports explicitly related this case to those
of PVS/MCS patients (for example http://content.time.com/time/maga-
zine/article/0,9171,2162277–1,00.html). Although recognising that the
medics spoke of the person as ‘already dead’ what our interviewees treat
as (real) death is cardiovascular death (as signalled by the flat-lining of
the monitor). This is a firmly biological rather than consciousness-based
definition of death – even though this wife and this father accept that
consciousness has gone (that is, the person is brain dead) and even (at
an intellectual level) that this means the person is ‘dead’, there is still
something very compelling about being with a body that is warm and
breathing (albeit with a ventilator) which leads us to experience it as
‘alive’. But, these interviewees had only a few days of experiencing a body
without consciousness. In the rest of our analysis we address how families

experience being with relatives who have no (or minimal) consciousness
long term. As with ‘brain dead’ patients, the vegetative and minimally
conscious patients started off in intensive care – but, unlike them, they
have survived independently of ventilators: they are not ‘gone’ (that is
‘brain dead’) and there has been no final ‘goodbye’. How then do inter-
viewees talk about life and death in relation to these patients?
The way in which interviewees explicitly tried to present their
relative as living or dead to some extent mapped onto their views
about the meaning of life. For some interviewees life, at all cost, was
to be valued and should not be discriminated against. Life without
consciousness was still life (or at least retained the possibility of
recovery for future life). For others, however, the disordered state of
consciousness fundamentally compromised the meaning and quality
of life. Families whose relatives had clear PVS diagnoses (especially
those who were seeking the discontinuation of life-sustaining treat-
ment) often made the strongest statements about their relative being
at least ‘not alive’: ‘she’s existing, she isn’t living’ (Natalie); ‘she died
four years ago’ (Harry); ‘It’s Colin’s body being kept alive somehow.
He’s not in it anymore’ (Jade); ‘He’s already dead’ (Brian). (For further
discussion see Holland et al., 2014.) For them the continued artificial
maintenance of the body was unnatural or perverse. However, even
some relatives who were in favour of ongoing life sustaining treat-
ment sometimes revealed a different perspective through ‘slips of the
tongue’ while talking to us. Kathy, for example, had strong spiritual
beliefs that her sister’s current state of suspension was ‘for a reason’
but said of her sister: ‘if Bella were alive – oh! Say again! If Bella were
awake, conscious ... ’
Family members who felt their loved one would be ‘better off dead’
also sometimes emphasised that their relative was actually very much
alive – with present experience and sensations. It was unusual for family
members to view their relative as ‘comfortable’ – twitching, grim-
acing, and teeth grinding can make the vegetative body/person appear
distressed. Seizures may also occur. And minimally conscious patients
are known to experience pain. Indeed interviewees with an MCS rela-
tive sometimes looked back on a time when their relative showed no
awareness at all with something like nostalgia: ‘It was better when he
was vegetative’, comments one, ‘there was just emptiness’.
Perceived suffering was part of the rationale some relatives had for
speaking of their relative as very much alive and contrasting this explic-
itly with being dead – a state for which they used terms such as ‘at
peace’. (For further discussion see Kitzinger and Kitzinger, 2014.) One
interviewee, for example, while accepting the experts’ PVS diagnosis for
her relative was adamant about the horrendous nature of his life:
If you start mucking around with the brain you can be left with what
did happen, and that is worse than death you know. [ ... ] People don’t
want to believe that people are living such horrendous lives. They go
‘oh I’m sure there’s something’. Well no there isn’t always something.
Life isn’t always better than death. And it shouldn’t be life at all costs.
(Rose)
This interviewee, in this context repeatedly uses the words ‘living’, and
‘life’ – emphasising the horror of continued existence in such a state.
She went on to argue that active euthanasia should be available in such
circumstances.
What caused someone to still be alive?

All of these families’ relatives would have died without medical inter-
vention and interviewees whose relatives had been resuscitated often
talked about their relative as having ‘actually died’– but death having
been ‘arrested’ or ‘reversed’. Frieda says her mother, injured in a riding
accident: ‘kept on dying’ but a doctor at the scene kept reviving her
until the ambulance arrived and that ‘she died several times’ in the
ambulance ‘but they kept her going’. Ann says her daughter drowned
and ‘did really die’ at the site where she was found. Felicity says her
partner, who collapsed with a brain infection: ‘actually did die, once for
six minutes and once for eight’.
The way these interviewees talk about their relatives (near) death is
inflected through their perception of their loved one’s present state or
potential future condition. When Ann, for example, declared that her
daughter (who remains in a vegetative state after many years) ‘really did
die’ at the accident site, her other daughter (in an interview with the
two women jointly) added ‘we do find it stupid that they didn’t leave
it at that’. By contrast Felicity, who (against all medical advice) passion-
ately maintains a belief in her partner’s future recovery, talks as if she
imagines regaling him with the tale and speculates about the impact of
having died on his future appreciation of life:
He has died twice, (laughs) do you know what I mean [ ... ] And I
can’t see how he would not have different appreciation for life now.
Especially when he realises that ‘you died, do you know, you died
twice, and you nearly died every day for months and months and
months’ [ ... ] me and a friend of his always joke that we’re going to ask
Nin if he saw the light. ‘What did you see, Nin? What did you see?’
The meaning of such closeness to, or return from, death is also presented
in different ways depending on interviewees’ attitude toward the past,
present and future. Some of the interviewees thereby construct the
‘natural death’ in negative relation to the ‘artificial life’. One mother,
for example, talked angrily about the medical system that had inter-
vened to prolong her daughter’s life against the wishes of the family
(and, she believes, her daughter’s own wishes). She described her daugh-
ter’s current existence as a kind of ‘artificial life’, created by doctors who
have no respect for who her daughter had been and no knowledge of
the family’s culture: ‘we’re acting as if these are people from outer space
and we can somehow keep them going and it’s very clever of us’. A
similar perspective was presented by another interviewee who described
how medics operated to save her mother’s life against the wishes of the
family. This interviewee reflects bitterly on the fact that by the time
clinicians did eventually decide to turn off her mother’s life support
it was too late – the crisis was over and the body’s instinct for survival
ensured her mother kept breathing:
It seems sort of bitter and ironic that, [ ... ] they’d given her [ ... ] just
enough time for her to gather just enough strength to muster up a
hold. [ ... ] they’d intervened massively once and then, just as signifi-
cantly, a second time [with operations]. And she didn’t die when they
turned off life support. Off she went – breathe, breathe.
By contrast other interviewees interpreted the continued existence of

their relative against all predictions as a sign that the patient had a
positive motivation to survive and would defy the grim statistics about
the severe impairments they were likely to face if they ever did recover
consciousness. Stavos, who, like Felicity, apparently anticipates a time
when he will be able to communicate with his brother, sees his survival
as evidence of his brother’s determination to live and looks forward to
helping his brother write a book about his experience. Other families do
not imagine such high-level recovery, but still see ongoing survival as
indication of a higher spiritual purpose, or the hand of God. Kathy, for
example, thinks her sister still has a ‘purpose’ in life, if not for herself
then for others, and Felicity reacts to the fact her husband survived two
prolonged cardiac arrests, by declaring: ‘If that man was meant to die,
I believe God would have took him then [during the cardiac arrests].
That’s my faith.’ Felicity’s account recalls confrontational encounters
with doctors reluctant to keep treating him and describes the impression
she was left with after one such meeting with a consultant who wanted
to switch off her husband’s ventilator:
I said, ‘you can’t do that, do you know, he’s a man, he’s my partner,
I’ve got a baby, he’s my baby’s dad’ [ ... ] And he [the consultant]
started saying to us [ ... ] ‘I will not keep a slab of meat, that’s all he
will be, a slab of meat alive in my room, I won’t do that, that’s undig-
nified [ ... ] he will just be dead but in the body’ – do you know, I can’t
remember the words now, it was just he had no compassion for us.
He was just getting his point across.
Months later another consultant questioned Felicity’s insistence on

aggressive intervention (Nin’s weight had dropped to under six and a
half stone and he was having regular seizures) and Felicity successfully
argued for treatment again:
I guess some people feel [ ... ] that people are trying to die and you’re
not letting them [ ... ] But I hope that I have the right judgement to
make that decision, if I felt that Nin was ready to go, that he’d had
enough [ ... ] But then again, I’d probably leave it up to God because
when Nin’s time to go is to go, I don’t think it matters what equip-
ment I would use.
Relationships, ‘social death’ and ‘life’

Definitions of death have been well-researched in the context of
defining ‘brain death’ for the purposes of organ harvesting (Lock, 2002).
However, another reason why it matters whether a person is ‘dead’ or
‘alive’ is because of the implications for relationships. (See, for example,
Behuniak, 2011, on ‘social death’.) The picture that emerged from our
interviews was complex and somewhat double-edged. Some of these
relatives declared their loved one ‘gone’. A husband, for example, said
of his wife ‘to all extent and purposes, she no longer exists’ and a mother
said of her son ‘his body’s just going to outlive him ... It’s like a bereave-
ment but you can’t grieve and they [care staff] keep telling me he’s not
dead’. Interviewees sometimes use images when describing their relative
that are alien, inanimate or animalistic (for example ‘zombie’, ‘husk’,
‘dummy’ – for a critique of such language see Behuniak, 2011). This
could lead for them to fight for ‘death with dignity’ – a desire to bury
the body that was outliving the person. On the other hand some (some-
times the same people) emphasised that their relative was very much
still alive, and use this to assert the patient’s claim to social acknowledg-
ment and respectful and interactive care. Tania reacts angrily to friends
and acquaintances who have stopped asking about his son declaring
‘he’s still alive’. Morag makes a similar assertion in her message to staff:
Don’t talk over him like he’s a piece of meat or like he’s not even
there; or like he’s already dead because he’s not. ... he’s a living,
breathing human being.
Although everyone wanted the person/body treated with care and respect
for some interviewees the ‘death’ (or at least absence of personhood) meant
there was no reason to visit, that energy should be focused on ‘the living’
(such as their children), or that visits were simply out of duty and involved
‘going through the motions’. Individuals were often ambivalent and fami-
lies occasionally split around such decisions – for example a mother might
continue to visit, but a husband declare there was no point, or one family
member may wish ‘life-sustaining’ treatment to continue, the other to
allow death. Some were critical of other relatives and the role they had
adopted in relation to the patient. One, for example, reflects negatively on
the way her son’s grandmother has moved in on her son’s life – ‘it is as if
she owns him’; another describes a mother’s (in his view misguided) devo-
tion to maintaining her son’s life and visiting him every day:
It was the mother that insisted that he [her son in a vegetative state]
was going to get considerably better and also that she was communi-
cating with him, she knew what he wanted, she knew what he was
saying, and then she died, [ ... ] what sort of sick joke is that. You know
she’s killed herself trying to keep him alive and he’s dead anyway.
Some interviewees were also self-critical about quite what they were
devoted to. One woman said she thought she was keeping her husband
alive ‘for me’, rather than for his own sake. A mother, caring for her
vegetative daughter at home reflects that it is a bit like keeping a human
being ‘as a pet’:
What we’re doing could be seen as a selfish act [keeping our loved
one alive]. Because we don’t want to lose them. We want to keep
them here with us. But all you’re keeping is a shell.
However, some interviewees felt there was still some point to their
relative’s life – some connection either through subtle communica-
tion such as eye opening or through their ongoing social roles with
or without active participation (‘he’s my partner ... .he’s my baby’s
dad’). Morag, for example, appreciated the many years in which her
father had survived in a vegetative (or probably minimally conscious)
state:
To have had him there, at least, you know, we could tell him about
our GCSEs [school examinations at 16 years old], we could tell him
about our A Levels [examinations at 18 years old]. And I remember my
cousin got married and we were bridesmaids and we went between
the church and the reception, we went to the hospital and we left our
bouquets in the hospital and had photos taken with him. You know,
so he was still part of what was going on.
Morag emphases the ongoing social relationship with her father

through her own growing up and is grateful he was still part of their
lives, although she added ‘but on the other hand, our lives stopped for
nearly a decade, particularly my mum’s’. However, two women involved
in our research actually saw their lives as in some ways improved by
their partner being in a disordered state of consciousness. One saw
her partner being in a coma as ‘easier than breaking up’ and found
visiting ‘peaceful’ and ‘connected’. Another also talked of the pleasure
she took in visiting her husband and described the dramatic change in
their relationship once he was in a vegetative (or possibly minimally
conscious) state. Through fighting for him to continue to receive treat-
ment, she had found her own power and voice within a relationship
in which she had previously been very disempowered and controlled
by him (Saunders et al., in press). In both cases these women wanted
life-sustaining treatment to continue in spite of opposition from other
family members and/or clinicians.
The spirit and the soul – memory, funerals and resolution

Whether or not they were religious many interviewees evoked a concept
of ‘spirit’ or soul. Some made comments about medical science ‘trap-
ping’ the soul in the body artificially, others saw ‘the soul’ as making
a choice to stay – and ideas about spirituality and the meaning of life
were mobilised in thinking about death. One mother commented that
allowing her daughter to die would be a positive move, better than
keeping her trapped in her body:
Do you know in a way, it sounds too goofily spiritual perhaps, but I

don’t believe death is the end – we have an effect on life, the future,
other people’s lives beyond our own death, or can have. So I don’t
think it’s like a door slamming.
Memory of the person who had ‘gone’ was often crucial to interviewees’
judgment. Interviewees talked of wanting to remember their loved one
as they had been (‘vibrant’, ‘alive’) and emphasised the importance of
how their relatives themselves would want to be remembered.
Fantasies about funerals were often linked with closure, memory
and commemoration.2 Ann, whose daughter has been in a vegetative
state for many years, recalled how at the beginning: ‘I thought it would
be nice to have a month to say goodbye’ but when she was told her
daughter might survive for years:
I was very aware at the time that I wanted to remember Fiona as she
was. I didn’t want it to drag on for months and I didn’t want my
memory of Fiona to be these months and months of suffering.
Ann’s other daughter, Bea (in a joint interview), explained how she planned
the funeral, going through all her sister’s favourite CDs to choose music
for the event. She contrasts being able to choose music with the difficulty
of choosing ‘least worst’ options in relation to medical treatment.
I was really pleased that I’d had the chance to do that. She’d be really
pleased with the decisions made for her funeral [ ... ] Planning a really
nice do, and choosing the music was a decision on something that I
could be proud of planning for her.
Other families also talked at length about the funerals that they had
planned, but never been able to have. Diane, whose mother had been
injured when Diane was still a teenager, commented:
I fantasize about [ ... ] her funeral basically – being able to be united

and to celebrate her and you know remember her in a sort’ve ... not
in this [ ... ] this blackness that lives with you, that sort of plunging
despair that lives inside you [ ... ] It would’ve been a tragedy that Mum
had died [ ... ] ... but it would’ve been ... we would’ve been able to go
forward. As it is we’re stuck, all of us, behind this glass wall and when
she dies ... although it’s been so long, you kind of imagine it’s all going
to be okay when she dies.
Diane’s older sister, in a separate interview, also talked of thinking about

her mother’s funeral.
I go through phases of dreaming about Mum’s funeral but dreaming

about talking to her as she’s dying about, talking to her in her coffin
endlessly, [ ... ] There’s a lot of, kind of, turmoil around the idea of her
dead and not dead, dead and not dead, here and not here. You know
it’s the, the sort of, it’s just the unresolved ...
Conclusion
This chapter has highlighted ordinary understandings of death as they

are mobilised in extraordinary circumstances by families of severely
brain-injured individuals. The analysis underlines that death, as also
other chapters of this volume make clear, is not a fixed category – and
death and dying derive their meanings through contingent signifying
relations. New technologies, and ways of deploying those technologies,
have created new forms of liminal beings who occupy an ambiguous
position (‘dead and not dead, here and not here’) and our interviews
with family members highlight the work done by family members as
they try to deal with, and make sense of, the challenges this throws up
for them in the context of their own experiences, cultures, religious and
spiritual beliefs, knowledge of their relative’s values, their own relation-
ships and wishes, and their engagement with the legal–medical system.
Family members negotiate different constructions of life – the biolog-
ical (the still warm body and beating heart), the consciousness based para-
digm (focused on the patient’s awareness) and relational elements (the
place of the person in the family). Such negotiations take place against
a background of uncertainty and shifts over time (because the ‘perma-
nence’ of the disordered state of consciousness is only confirmed after
months or even years) and sometimes very confusing experiences at the
bedside (when the patient may display behaviours that raise questions
about their level of awareness). Any simple reclassification of the being
as ‘dead’ is complicated by the warm, breathing body, the organisation of
care around sustaining ‘life’ (often in the apparently ‘domestic’ and non-
medicalised setting of a long-term ‘care home’ or ‘rehabilitation centre’),
and the social space occupied by the individual (as husband, son, sister
or partner). It is also complicated by the uncertainty families may experi-
ence about when, and if, the state has become permanent, and whether
their relative might just have some minimal consciousness – as well as
the values they themselves place on different meanings of life.
It is not surprising that our data show that families explicitly negotiate,
and struggle, with these challenges. They take explicit positions about
whether their loved one is dead or alive, but then stumble over words in
trying to make sense of the situation – sometimes referring to their rela-
tive as dead, but correcting themselves, or speaking about the patient as
both living and dead in the same sentence. It is also not surprising that
different ways of looking at the body/person can be a source of conflict –
sometimes between families and friends, but more Often, in our data,
between families and professionals. This was evident, for example, for
the mother who feels doctors have created ‘artificial life’ in sustaining
her daughter, and the other who says that staff ‘keep telling me he’s not
dead’. The same conflict is apparent in the words of the daughter who
admonished staff: ‘he’s [not] a piece of meat ... . he’s a living, breathing
human being’, and in the report of the wife who describes her horror at
the intensivist who dismissed her husband as ‘dead but in the body’ and
wanted to treat him as simply ‘a slab of meat’.
This chapter illustrates that social constructionist/ivist approaches to
death are not limited to the ivory towers of academia, but, for these
families, become an integral part of trying to make sense of the experi-
ences and systems they confront under the most traumatic of circum-
stances. Close attention to such accounts will help round out social
constructionist/ivist accounts, place abstract theorising about the ‘PVS’
category in context and may suggest how understandings of discourses
around death may help families and clinicians, and assist in framing
policy and practice – including the delivery of so-called ‘life-sustaining’
treatment.
Acknowledgements:
This paper was part-funded by the ESRC (Ref: ES/K00560X/I) and by

Research Priming Funds provided by the Wellcome Trust [ref: 097829/
Z/11/A] through the Centre for Chronic Diseases and Disorders (C2D2)
at the University of York.
Notes
1. For discussion of the challenges and opportunities of ‘insider research’ see
Saunders et al. (under submission).
2. The importance of ritual in the marking of death has been explored in many
studies, and the liminal has been theorised. For example, in some societies,
the dead may not be quite dead until their bones have been exhumed or
collected and then burned, cleaned and buried in another place from the first
internment. Therefore, between the biological death and the final recognition
that the spirit has joined the spirit world, the ghost of the dead may walk the
earth for a while. This is a liminal, in-between, transitional state (Kellehear,
2007).
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Except where otherwise noted, this chapter is licensed

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Afterword: The Social Construction of
Death: Reflections from a Quantitative
Public Health Researcher
Joachim Cohen
With this book the editors have envisaged to enrich the research field
of thanatology with a social constructionist approach1 to the study and
understanding of death and dying. Of course, an approach to death
and dying from a social constructionist perspective is not new. But after
reading all draft chapters of this edited volume, I can only conclude
that I do not know of any work in the field that so systematically
and methodically explains and illustrates the positions underlying the
social constructionist approach, its meanings and possible applications
within the light of death studies, and the necessity of adopting some of
its insights and methods to understand (at least some) aspects of death
and dying within societies. As such, I believe the editors have poten-
tially greatly contributed to a step forward in the (social) study and
interpretation of death and dying. I add ‘potentially’, because I also
see a risk that the book may eventually address an audience of (mostly
qualitative) social scientists already convinced of the merits of a social
constructionist approach; a community sharing – albeit in implicit
ways – its paradigm and epistemologies. There is, however, definitely
also a need to address quantitative thanatologists, a community that is
particularly active in the field of end-of-life care research where scholars
above all aim at policy advice and care improvement. Considering
recent demographical evolutions in terms of longevity and the emer-
gence of medical technologies for sustaining life (issues that have been
addressed in this volume), research on end-of-life care and decision
making has become a highly significant sub-field of thanatology. By
deliberately (?) leaving out this research tradition to death and dying
(which I will position within a (post)positivist paradigm further in this
chapter), the editors risk not addressing this community of researchers,
hence missing the chance to convince them of the merits of social
259
260 Joachim Cohen
constructionist understandings of patterns in death and dying. In this

afterword I want to confront the quantitative and more materialist
research tradition to death and dying, in which the majority of end-of-
life care research is embedded, and the social constructionist tradition.
I will, first, problematise the differences between the paradigms and
even epistemologies underlying both traditions. I will then on the one
hand make some suggestions as to how social constructionist episte-
mologies can further the (post)positivist tradition’s understanding of
statistical patterns in death and dying and on the other hand urge the
social constructionist research tradition to adopt more of the finali-
ties of the (post)positivist tradition, particularly that of patient care
improvement.
The social constructionist and the (post)positivist

tradition: irreconcilability of paradigms?
To illustrate the paradigmatic differences between the (post)positivistic

approach and the social constructionist approach and the problems
inherent to that difference I want to revisit a critique on end-of-life
care research posited by Brown and Colton in an article published in
2001 (Brown and Colton, 2001). In that article they identify the lack
of engagement with elements of social theory in quantitative research
about death and dying as problematic. They criticise most quantitative
research about death and dying (and other aspects of health care for that
matter) as being very much complicit with the hegemonic biomedical
model. Death and dying are approached from a caregiving or health-
policy orientation, with the aim of improving patient care. Due to the
intrinsic peculiarities of quantitative health services research it handles
statistical findings as truths, (unwittingly) reducing dying to a biological
process. Quantitative public health research seems to be somewhat blind
to a robust social-theoretical understanding and interpretation based
on the social processes that construct the various aspects of death and
dying. Brown and Colton see this type of research and the underlying
epistemologies as antagonistic and in fact irreconcilable to postmodern
scholarship, such as the social constructionist tradition, in which there
is scepticism about scientific explanation and which is oriented more
towards understanding than towards explanation. Their criticism of
quantitative public health research regarding death and dying is that
data do not simply exist but variables included in, or excluded from, any
given data set also reflect choices of individuals and institutions with
the power to make these decisions.
Afterword 261
Problems of quantitative end-of-life care research
Brown and Colton illustrate their critique with a quantitative study

about the place of death using death certificate data, interestingly a
field of research I have actively been involved in. Unlike Brown and
Colton, I do not believe that end-of-life care research (about the place
of death or about any other circumstances of dying or end-of-life care)
is blind to social constructionist or social-theoretical notions, at least
at the level of the framing and justification of research interests and
questions. In their approach towards aspects of death and dying most
researchers would acknowledge the basic notion that the manner in
which death and dying take place within a certain time and place are
to a great extent the result of circulating discourses, taboos, beliefs,
or attitudes and as such have an important cultural constituent. For
instance, the hegemonic discourse of a good death as defined in terms
of control, autonomy, dignity, awareness, and heroism (see Chapter 1
by Van Brussel in this book) is often explicitly used as a justification for
an interest in the place of death (Seale and van der Geest, 2004; Payne
et al., 1996; Steinhauser et al., 2000). Emerging medical–revivalist death
discourses challenging the medicalised, rationalised and institutional-
ised death inspire this interest, particularly in home death which is seen
as more natural, enabling people to have more control over their quality
of life and providing more psychological comfort (Bowling, 1983;
Gallo et al., 2001; Wilson et al., 2002; Higginson et al., 1998; Brown
and Colton, 2001; Yun et al., 2006). Changes over time in the place of
death are also understood within the context of changing discourses
around dying control and the good death (Wilson et al., 2002). While
there is thus no complete lack of engagement with a social construc-
tionist approach in the view of reality in the (post)positivist tradition,
I think the difference between the paradigms becomes clear when the
‘purpose’ of the research has to be framed. In the (post)positivist end-
of-life care tradition, in order to be acceptable, the research usually has
to be justified in terms of its potential contribution to the improvement
of patient care and outcomes (Mezey et al., 2002; Finlay et al., 2002;
Catalan-Fernandez et al., 1991; Bowling, 1983; Gallo et al., 2001; Peters
and Sellick, 2006; Teno et al., 2004; Grande et al., 2004; Barbera et al.,
2005; Yao et al., 2007). This introduces a reductionist focus as the study
needs to formulate direct holds for actual practice or policy. The conclu-
sions, therefore, also need to be focused, simple and straightforward (the
sort of ‘a’ will lead to ‘b’ provided ‘c’ conclusions). This will also influ-
ence the ‘language’ of the data presentation and interpretation. It is in
262 Joachim Cohen
that stage of the data analysis that the link between the constructivist
thanatological paradigms and the (post)positivist ones becomes more
problematic.
I will illustrate these problems applying Brown and Colton’s critique
to my own research regarding the place of death using death certifi-
cate data (Cohen et al., 2007). An overarching issue is that this type of
large-scale quantitative research (I used full population data for several
countries) can suggest statistical patterns and patterns of association,
but does not allow us to say anything conclusive about social processes
that are produced or maintained by those patterns (Brown and Colton,
2001). While my research identified a number of socio-demographic
and cross-cultural patterns in place of death, it is difficult to move the
conclusions beyond ad hoc explanations that are focused on patient
choice, improved care, or efficiency. For that social theory is needed.
The research does provide useful insights to improve patient care and
access to care as it identified important inequalities in the chances of
dying at home depending on where people live, their educational attain-
ment, whether they have a spouse, etc. This provides handles for care
improvement. On the other hand, it remains difficult to know exactly
what social processes and social constructions underlie the choices and
decisions made with regard to the place of death.
This difficulty, firstly, becomes apparent when interpreting the
meaning of the outcome variable. What is the meaning of ‘home’ and
what makes it so distinct from a hospital? Some of the underlying
assumptions inspiring the research can indeed be questioned: whether
the hospital is disturbing normal social relations, and whether the home
is a valid operationalisation of control, dignity or comfort, or why it
is being perceived as such (Brown and Colton, 2001; Thomas et al.,
2004).
Secondly, this difficulty manifests in the interpretation of the found
effects. For instance, in my study I found strong empirical evidence of
large differences between sometimes neighbouring countries in the like-
lihood of dying in familiar surroundings and also found effects of health
care availability (the number of beds in health care institutions), rural-
urban residency, and educational level (Cohen et al., 2008). What these
effects or differences mean, or the reasons for them are, however, less
clear. For instance, country differences may be due to economic differ-
ences (for example, differences in the budget) or due to differences in the
organisation of end-of-life care. However, even if we can operationalise
those economic or organisational factors and test our hypotheses about
them, it still remains unclear whether these political/economic factors
Afterword 263
are the cause of the differences or whether they are part of broader social
processes, such as varieties in processes of health care restructuring.
While there may be a drive among quantitative public health researchers
to operationalise all potentially explaining factors and thereby statisti-
cally test all hypotheses, the point is that this may not be possible or
even desirable. As Brown and Colton put it, statistical representations
are not self-evident truths. They must be countered with work on how
we know certain truths to be true, and their meaningfulness in a social
context (Brown and Colton, 2001).
Towards some ‘palliation’ of the problem?
Having sketched the pitfalls of the (post)positivist end-of-life research

tradition and the need to include social-theoretical explanations, what
can a quantitative researcher do to address or at least acknowledge these
problems? Particularly if the language and logics of the social construc-
tionist and the (post)positivist/biomedical traditions are so funda-
mentally different? (For an ideal-typical description of the differences
between both paradigms, see Table 13.1.) Is some kind of reconcilia-
tion between both paradigms even possible? Especially in a context of
publish-or-perish logics and competitive funding within the health care
sciences that very much favours the biomedical model; a context of a
3,000 words (or less) limit applied by journals that leaves little room to
incorporate a lot of social theory about social processes that underlie
the findings; and a context that also makes it unwise to put findings
too much into perspective as biomedical health care journals seem to
impose a reductionist logic to quantitative statistical analysis, in which
it has to be aimed at providing a model with a maximal clinical predict-
ability so as to be able to facilitate care planning. I believe that, within
this restrictive context, the solution for the quantitative researcher is in
a commitment to a certain deconstruction of the quantitative findings
through an engagement with qualitative or mixed-methods research
and social theory.
I illustrated that, even if all possibly explanatory factors could be
operationalised in a quantitative model and all hypotheses tested, there
is still a need to contextualise the findings. The quantitative public
health researcher will therefore need to make an effort to think outside
of the biomedical epistemologies and paradigms and to (at least partly)
deconstruct the findings, for instance using the insights generated by
social constructionist or social-theoretical research. The chapter by
Belgrave and Charmaz in this book, for instance, insists on the role of
Table 13.1 An ideal-typical description of the differences between the social constructionist and (post)positivist research traditions in
thanatology
Social constructionist tradition (Post)positivist tradition
Approach about The manner in which death and dying are taking The manner in which death and dying are taking place is
truth and reality place is constructed by social processes and is according to a number of general laws (that can be captured
/ underlying historically and culturally specific, for instance empirically).
epistemologies shaped through power struggles. Facts and values regarding death and dying can be
Aspects of death and dying are contingent; a result uncovered.
of convention, perception, and social experience. There is an objective truth about the manner in which
There is no objective truth about the manner in death and dying are taking place that can be uncovered
which death and dying are taking place. Truth is through the right scientific knowledge.
man-made and contextual.
Role of meanings Meanings of practices related to death and dying are Meanings of practices related to death and dying are taken
of central interest and are contingent and part of a for granted.
complex world. These meanings can only be
captured within the context of discourse.
Logics underlying The research question or hypothesis is The research question or hypothesis is quality of end-of-life
the statement of philosophically inspired and often driven care inspired and often driven by real-world problems (e.g.
issue by a researcher’s interest in a more thorough aspects of patient end-of-life care that can be improved.
understanding of processes shaping patterns in
death and dying.
Research Deconstruction and double reading. Mostly using Empirical research methods similar to those in natural
methodologies qualitative data analysed with discourse analytic sciences. Mostly quantitative data.
methods. Methods are aimed at obtaining statistical models
Methods are aimed at describing and understanding explaining attitudes and practices regarding death and
processes that shape hegemonic (and alternative) dying. Context (e.g. specificity of a country) is important
discourse around attitudes and practices regarding but can be accounted for through appropriate statistical
death and dying. The focus is on understanding operationalisation. Everything can be measured and as such
these aspects within a given context. distorting factors of an effect can be neutralised.
Research The approach is holistic and descriptive. There is an etiological interest: through the appropriate
methodologies There is an interest in describing and research methods and statistical analysis the causalities of
understanding rather than in describing and aspects of death and dying are explained.
explaining patterns in death and dying. There is a reductionism about concepts and meanings:
Explorations about aspects of death and dying the data quantitatively capture concepts of death and
are based on (theoretical) hypotheses and dying and are handled as truths in the statistical models.
generalisations based on data collection. Interpretations ‘stick to the data’.
Aims Describing and understanding attitudes and Improving end-of-life care.
practices regarding death and dying in society.
Description of No. Yes.
behavioural
patterns
Claims regarding The truths about attitudes and practices regarding The truth of the results is not negotiable but may be
the results death and dying are always negotiable in biased as a result of scientific flaws (e.g. omitted factors,
themselves. inappropriate measurement).
Main critique The understanding of death and dying is too Blind to a robust social-theoretical understanding and
theoretical and abstract and not enough interpretation based on the social processes that construct
preoccupied with the ‘actual’ end-of-life care the various aspects of death and dying.
practice and problems. The logics inherent to the scientific methods and
epistemologies reduce attitudes and practices regarding
death and dying to biomedical phenomena.
266 Joachim Cohen
constructivist grounded theory to adequately understand various issues

of death and dying including the experiences and meanings of illness,
death, and dying. Reference to this type of research will usually serve
the purpose of suggesting the possibility of alternative explanations or
processes but also of raising the point that larger processes (for example,
market and socio-political processes) also need to be understood to
adequately understand the findings.
The problem of the meaning of a certain outcome variable – such
as the place of death (sketched above) – illustrates the need for some
deconstruction, and additional qualitative research using narrative and
discursive analysis techniques (rather than the frequently encountered
qualitative research that is complicit with a biomedical model and applies
the same logics) is needed to better understand the social construction
of the views regarding home, hospital, or the nursing home as a place
of death.
The problem I sketched regarding the meaning of statistical effects
is another good illustration of the need for deconstruction. Gaining
a better understanding of what the differences in the place of death
between countries mean requires more insights into what discourses
about the good death or appropriate end-of-life care circulate across and
within societies (for example, among lay people, physicians, patients) as
well as structural, cultural, political, economical, and historical factors.
These may be very different in the different countries and may also
be embedded in social construction of healthy ageing in the different
countries. Social constructionist analyses of media constructions of
death and dying (see Part II of this book), but also description and
analyses of rituals and practices of mourning and grieving (for example,
addressed in the chapters of Árnason, Gibson, and Glynos) and of atti-
tudes towards certain medical practices (for example, addressed in the
chapters of Kitzinger and Kitzinger, and Howarth) can provide a good
notion about the importance of certain hegemonic discourses around
aspects of death and dying. Understanding how death and dying are
articulated in relation to self and society helps to understand various
behaviours surrounding death and dying. Similarly, the data regarding
an effect of educational attainment do not present truths here in them-
selves. They may be indicative of different preferences, but are likely to
be due to differences in housing conditions and in access to palliative
and other care services, as well as to differing capacities to express prefer-
ences. The unconscious prejudices of physicians are also believed to play
a role in hospice/palliative care or hospital referral (Sims et al., 1997). So
while the data do point out direct or indirect inequities in the chances
Afterword 267
of dying at home, something that definitely calls for further attention

by public health policy-makers, there is also a need for social theory and
qualitative analysis to examine the social processes that underlie the
found statistical pattern.
My suggestion for the quantitative ((post)positivist) end-of-life care
researcher would thus not be to change the rules of the game, but rather
to be more reflexive about the epistemologies underlying a certain
research tradition. However much quantitative public health research
begs for a certain deconstruction, it does provide relevant information.
A reductionist approach has disadvantages that the researcher should
be aware of, but also has many advantages such as that it improves the
focus and feasibility of the research and the transferability and commu-
nicability of the findings. The researcher just needs to be explicitly
reflexive about the truth that the findings are claiming to tell and needs
to review those in the light of insights acquired from social constructivist
thanatology. The focus should include an understanding of the results
rather than only an explanation or prediction. From a practical point of
view, the researcher should aim, as a minimum, for some deconstruc-
tion and contextualisation in an article in a biomedical journal (even if
this means that the language becomes less self-confident and the find-
ings more put into perspective), but ideally he or she could also aim
for complementary publications in social science journals that do allow
one to incorporate theory about social processes, contextualisation, and
ideations.
Crossing the bridge from two sides
My focus has so far been on the limitations of the more (post)positivistic

end-of-life care research tradition and the possible strategies to counter
part of those limitations. There remain in my personal opinion, however,
a number of intrinsic weaknesses of the social constructionist tradition
that also need countering. Social constructionist thanatology traditions
seem to suffer, also in this book, from a lack of a clear connection with
the quantitative public health research. To put it boldly, I think there has
been an exaggerated interest in historical recounts and interpretations
of how death was constructed in different societies and in the analysis
of the construction of death and dying through media such as film and
other arts. This research is often driven by scholarly intellectual interests
and I do not contest its useful contribution to thanatology. However,
the connectedness with the end-of-life care research tradition is lacking
too often, and this is a missed opportunity to reconcile paradigmatic
268 Joachim Cohen
and epistemological differences. Qualitative researchers can also enter

into a dialogue with their colleagues that work within the quantitative
tradition and insist more on the role of the cultural context that shapes
and underlies statistical patterns indicated by end-of-life care research. I
believe that questions regarding the interpretation of quantitative find-
ings (for example, why are there such large differences in the chances of
a home death between countries, and why is there a social gradient in
the likelihood of dying at home?) can for instance be interesting starting
points for social constructionist research. What do statistical findings
mean, and what constructions of death and dying underlie them?
How do different groups reproduce and rearticulate these construc-
tions differently and how can this be linked to statistical findings about
different patterns in behaviour at the end of life? It is illustrative of
the lack of connectedness with the more materialist end-of-life care
research tradition that these kinds of question are seldom the starting
point for research in the social constructionist tradition. This also brings
us to the important limitation of the social constructionist tradition:
its lack of connecting the patient perspective with the actual organisa-
tion of care. Introducing the effort of contributing to patient care could
improve the connection between both research traditions and I believe
social constructionist knowledge could create a surplus here, even if it is
just by putting into perspective the biomedical line of reasoning behind
end-of-life care pathways, guidelines and the likes. The challenges for
social constructionist scholars (and perhaps for future books on the
social construction of death) lie in this kind of reconciliation.
In summary, I have drawn on the critique of poststructuralist and
post-modernist scholars such as Brown and Colton (2001) regarding
most quantitative research on death and dying. Its ‘language’ and the
‘power’ that emanates from the findings would be entirely different
from, if not irreconcilable with, the language used by discourse-theo-
retical and social-theoretical thanatological research. The problem lies
primarily in the expectations of such research being oriented towards
(the improvement of) patient care and of providing the necessary truths
thereto. In this regard, quantitative public health research is usually – to
a certain extent – complicit with straightforward biomedical research.
An irreconcilability of paradigms would imply the possibility that
both traditions of science play a different game according to different
rules and with a different finality. In its most cynical outcome it would
mean two completely different research fields (with different questions,
interests, journals, readership, etc.). I purposely exaggerated the ideal-
typical differences between both traditions, and used examples from
Afterword 269
quantitative public health research about end-of-life care to illustrate

the problems outlined in these claims about irreconcilability, but also
discussed how a reconciliation (albeit a small one) between both para-
digms can be sought by the quantitative researcher through a commit-
ment to a certain deconstruction of the quantitative findings (and the
often taken-for-granted meaning of concepts, arguments, and practices)
and by an engagement with qualitative or mixed-methods research and
social theory. On the other hand, the social constructionist thanato-
logical researcher needs to search for more connection with quantitative
end-of-life care research so that the insights gained through the research
can serve to put the statistical findings and their implications for patient
care into perspective.
The potential for reconciliation between both traditions lies in a closer
and pragmatic collaboration through the application of mixed-methods
approaches combining quantitative and qualitative data as well as social
theory, using as many different paradigms, perspectives, and theories as
appear helpful.
Note
1. Social constructionism here refers to both constructionism and construc-
tivism. For linguistic clarity, social constructionism is used.
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Index
60 Minutes, 98 awareness, 1, 14, 20–3, 25, 27, 30–1,

57–8, 62, 67, 79, 94, 117, 119–21,
abduction, 144 125–9, 141, 207, 239, 242–3, 248,
accident prevention, 166 255, 261
aesthetics, 76–81, 84–8, 89n1, 89n2,
89n6, 103 Bauman, Z., 1, 16, 19, 30, 105–6, 186
affect, 56–7, 63, 65 beauty, 54, 77–9, 87–8, 89n1, 89n7
affective practice, 63 Becker, E., 186
affective turn, 56–7 Belaunde, L. E., 187
afterlife, 207, 211 Belgian media, articulations of good
agency, 4, 28, 38, 40–1, 43, 45, 92–3, death in, 22–30
101–2, 106–7, 120, 186–7, 235n7, Bellali, T., 39
240 bereavement, 6, 39, 59–60, 62
Ahmed, S., 63 counseling, 186
AIDS, 101, 103, 106 definition of, 225
Airo-Pai, 187 digital, 221–35
Aita, K., 39–40 early, 52, 65–7
American Euthanasia Society, 94 relationship bonds and, 225–6
An Act of Murder (film), 94 transitional objects and, 231–3
anatomists, 208–10, 216 Berlant, L., 191
Anderson, B., 192 betrayal, 40, 148, 149
Anderson, W., 41 biological essentialism, 13
anger, 22, 58, 67, 187, 216 biomedical model, 2
anxiety, 59, 89n2, 138–41, 146, 155 Bloch, M., 185–9, 199
Aquinas, T., 167 blocked mourning, 141–3, 154–6
Aries, P., 7, 16–19, 53, 75, 108n3, bloodlust, 167
108n4 Blumer, H., 37, 95, 123
armed conflict, see war bodily resurrection, 207
Armstrong, D., 17, 19, 53 bodily standards, 79
articulation, 2, 15, 17, 69, 116, 118, body ideal, 79, 88
162–3, 166, 174, 179, 193 body snatchers, 209, 214
of good death, 14, 19–20, 22–30 Bowlby, J., 226
assisted suicide, see physician-assisted brain death, 40, 240–1, 245–51
suicide (PAS) brain injuries, 239–56
Atack, I., 168 Brown, M., 260, 262–3, 268
attachment, 146, 148, 213, 221, Burke, W., 209
225–6, 228 Bush, G. W., 137, 143, 148
authenticity, 115–22, 128, 130–7 Butler, J., 63, 143–4, 148, 151, 157
automated mourning, 156, 230
autonomy, 14, 20–1, 23–4, 28–30, 46, Callahan, S., 107
88, 105, 211, 261 cancer stories, 121
Autopsy, 80–93 capital punishment, 42, 166
271
272 Index
Carpentier, N., 76, 115–16, 130 consumer culture, 89n7, 213

Carsten, J., 192 contingency, 8, 14–22, 56, 137–42,
celebratory ethics of war, 161, 167 155, 161, 163, 168, 180
celebrity, 29 continuing bonds, 226
activism, 120–1 control, 13–14, 18, 20–1, 23–4, 26–8,
authenticity and, 117–21, 130–1 30, 45, 78–9, 87–8, 104–7, 120–1,
concept of, 114–15 230, 261–2
culture, 117, 119–21, 130 conversion symptom, 141
distance and disconnection from, Corbin, J., 35
126–7 corpses
illness and death, 114–31 aesthetics of, 77–9
vs. ordinary people, 114–15 dissection of, 205–18
public awareness and, 117 pre-modern discourses of the, 207–8
public understandings of, 121–31 TV representations of, 75–89
role of, 117–18 Cottle, S., 118
cervical cancer, 114, 119 Couldry, N., 117
Chadwick, R., 218 CSI, 80–8
Charmaz, K., 6, 23, 35–8, 40, 42–4, cultural scripts, 93, 107
46–7 culture, 2, 42, 52–4, 57, 89n7, 95,
Christianity, 207–18 102–4, 117, 119–21, 130, 144,
civilisation process, 78–9, 88 174, 186, 213, 221, 224, 227–8,
civilised body, 21, 77–9 250, 255
Clarke, A. E., 43 Cutliffe, C., 172
Claus, H., 23–5, 27–9 Cypriot independence war, 8, 169–81
clinical gaze, 211
cognition, 59 dead, talking to the, 227–8
collective identity, 192, 199–200 dead body, 9
collective meaning, 4–5, 42–3, 61, dissection of, 205–18
191, 221–3 medicalisation of, 211–12
collective memory, 207, 214–18 pre-modern discourses of the, 207–8
collective mourning, 142–5, 155, 157 TV representations of, 75–89
Colton, T., 260–3, 268 death and dying
coma-like conditions, 239–56 collective meanings of, 42–3
communication, health, 117–22 constructivist grounded theory on,
compassion, 95, 106–7, 191, 199 34–48
Connerton, P., 191 contingency of, 16–22
consciousness, 9, 27, 58, 141, 242, see definition of, 2
also disorders of consciousness discourse-theoretical approach to,
conscious planning, 18 13–31
constructivist grounded theory, 6, 23, ethical dimensions of, 7–8, 172–9
34–48, 122–3, 266 ethics and, 8, 161, 166–9
collective meanings of death and feelings about, 54–6
dying and, 42–3 ‘governing’, 8–9
death and dying in, 38–42 interdisciplinary perspectives on, 5
emergence of, 35–8 material dimensions of, 3
grieving and, 38–42 meaning of, 2–5
illness disclosure and, 43–8 mediated constructions of, 114–31
introduction to, 34–5 medicalised death, 13–22
symbolic interactionism and, 37–8 natural death, 21, 92, 250
Index 273
death and dying – Continued introduction to, 162–3

as natural phenomenon, 186–7 Laclau and, 14–16
political dimensions of, 7–8 Mouffe and, 14–16
in popular media, 7 discursive limits, 138
in psychoanalytic theory, 140–2 discursive psychology, 65–6
public understandings of, 121–31 dismemberment, 208
requested, 92–108 disorders of consciousness, 9,
sex and, 100–2 239–56
silence surrounding, 17–18 dispositive, 77
social construction of, 1–6, 186–9, dissection, 205–18
241, 259–69 Divine Right of Kings, 208
social death, 251–3 doctor-patient relationship, 17–18
tragic death, 185–6, 190–200 Doctor’s Riot, 209
unspeakability of, 52–69 Doka, K., 221, 225, 228
visibility of, 77–9 double burials, 188
death-awareness movement, 20, 95 Durkheim, E., 187–8, 191
death certificates, 17 dying, see death and dying
death-denial thesis, 16–19 dying patient
Death Education, 95 autonomy of, 14, 20–1, 23–4, 28–30,
deathly construction of society, 46, 88, 105, 211, 261
185–200 awareness of, 1, 14, 20–3, 25, 27,
death-related rituals, 16 30–1, 57–8, 62, 67, 79, 94, 117,
decapitation, 208 119–21, 127–9, 141, 207, 239,
de-cathexis, 226 242–3, 248, 255, 261
dementia, 25, 28 as hedonist, 25–6
denial, 16–21, 95, 144
Dexter, 80 early bereavement, 65–9
Diana, Princess, 61, 124, 128, 147, 149 Ekland-Olson, S., 42
digital media, 221–35 Eldridge, J., 115, 118, 124
dignity, 13–14, 20–1, 23, 25–8, 85, 97, electronic remains, 221–35
167, 207, 252, 261–2 Elias, N., 16, 53, 78–9, 88, 106
discourse-as-ideology, 15 embodiment, 55, 59, 119–20, 156
discourse-as-language, 15 emotional attachment, to body of
discourse-as-representation, 15 deceased, 213, 217
discourses, 2, 6, 163 emotional contagion, 61, 68
autonomy, 28–30 emotional labour, 22
control, 26–8 emotions, 24, 26, 42, 56–9, 63, 65, 67,
on dead body, pre-modern, 207–8 79, 86, 89n2, 122, 148, 187–9,
hedonism, 24–6 199, 225–7, 232, 245
independence, 26–8 see also feelings
pictorial elements of, 76–7 empty signifier, 161, 163–4
subjectivity and, 93 end-of-life care research, 261–69
discourse-theoretical analysis (DTA), end-of-life decision making, 7–8,
23–30, 137, 157, 161–6, 168, 173, 13–14, 18, 20, 39–40, 95
179–80 euthanasia and, 24–30
discourse theory, 13–31, 137–40, 161 enemy, 43, 151, 168–9, 171, 173–4,
contingency of death and, 16–22 176–80
ethics and, 163–6 Engelborghs, M., 24–7, 29
good death and, 19–30 EOKA, 169, 170–9
274 Index
ethics, 7–8, 161–2 French revolution, 167

bioethics, 97 Freud, S., 137–8, 140–2, 145–6, 155,
death and, 8, 161, 166–9, 172–9 157, 189, 199, 226
discourse theory and, 163–6 Friedman, H. A., 173, 181n6
of medical decision-making, 241 funerals, 253–5
of mourning, 140–6, 146, 148 Fuss, D., 186, 189, 191, 199
of peace, 168, 178, 180–1
of war, 161–2, 166–9, 173–6, 178–81 Galtung, J., 169
euthanasia, 6, 14, 18, 22, 54, 93–4 Gamson, W., 93
autonomy and, 28–30 gender, 63, 92–3, 100–2, 106–7
in Belgian media, 23–30 genocide, 166
construction as good death, 24–30 genre, 24, 28, 76, 80–1, 84–6, 94–5,
dignity and, 26–8 102–4
in film, 98–108 German Critical Psychology, 65
hedonism and, 24–6 Gibson, M., 232
Euthanasia Research and Guidance Giddens, A., 4, 13, 22, 105–6
Organization (ERGO!), 99 gifts, 213
existentialism, 42 Glaser, B. G., 34–5, 38–9
expertise, 116–22, 131 good death
extra-emotional feelings, 59 articulations of, 22–30
construction of, 19–22
Facebook, 190, 223–4, 226–34 euthanasia as, 24–30
Faludi, S., 143, 148 Goodman, N., 78, 89n2
fantasy, 137–42, 144–8, 154, 156–7 Goody, J., 114–31
fear, 18–22, 26, 40, 44, 59, 86, 119, Greek-Turkish War, 169
209, 215, 218, 243 grief, 8, 55, 58–62, 67, 137, 142–4,
feelings, 56–69 see also emotions 178, 185, 193, 199, 221, 225–8,
about death, 54–6 232, 234, 240
affective turn, 56–7 grounded theory and, 38–42
categories of, 58–61 healthy, 226
concept of, 57–9 research, 225–7
early bereavement and, 65–9 stages of, 230
emotional, 58–9 Grivas, G., 169–70, 173–4, 176
extra-emotional, 59 grounded theory, 23, 34–48, 122–3
of knowing, 59–60 guerilla warfare, 173–4
language and, 61–2
meaning and, 62–4 Hacking, I., 52
Feifel, H., 95, 108n3 Hannot, W., 115–6, 130
female passivity, 92–3 Harding, J., 171
film Hare, W., 209
discursive constructions, 93–4 Harrison, M., 39
plots for, 94 health communication, 117–22
requested death in, 92–108 health promotion, 166
victim-hero dyad in, 102–3 healthy grieving, 226
focus groups, 123–4 hedonism, 24–6
forgetting, 192 hegemony, 15, 19–20, 23, 31–1,
Foucault, M., 16, 76–7, 93, 206, 208, 155–7, 163–5, 168–9, 180, 206,
211 212, 259–60, 265
found effects, 262–3 Hemingway, E., 167
Index 275
heroism/heroic death, 21–30 killing, 43, 92, 94–5, 99, 102–4,

Hertz, R., 188 166–70, 173–4, 176, 180, 186
Hickethier, K., 80 knowing, 58–60
Hindu culture, 2 Knox, R., 209
HIV/AIDS, 120 Kriegsman, M., 80–1
Holland, S., 242–3 Kristmundsson, H., 193–4
Holocaust, 167 Krzyzanowski, M., 123
hospice, 18–19, 21–2, 26, 52, 266 Kubler-Ross, E., 95, 226
Iceland, road deaths in, 190–200 Laclau, E., 3, 14–16, 21, 30, 138,
ideals, 148–9 161–5
identification, 8, 118, 120, 125, 128, Langer, S., 57–8, 62
130, 141–2, 145–6, 151, 164, 189, language, feeling and, 61–2
191–2, 199–200 Last Wish (film), 102–3
identity boundaries, 223 Lawrence, S., 208
Igby Goes Down (film), 104–5 lay experts, 120, 128
illness Leader, D., 143
constructivist grounded theory on, legitimisation ethics of war, 161,
34–48 167–8, 173–4
disclosure of, 43–8, 114 Lewis, T., 118–19, 121
grounded theory and, 38–42 life-sustaining technology, 39–40
imag(in)ing, 127–9 limits, 138
mediated constructions of, 114–31 loss, 8, 40–9, 62, 67, 137–51, 189,
public understandings of, 121–31 199–200
images, 76–7, 100 of autonomy, 88
imagined communities, 192 pathways of, 147
independence, 14, 20–1, 24, 26–8, physical, 156–7
30, 46 recognition of, 144–5, 149–50,
individualism, 16, 69 154–7
informed consent, 66, 211 response to, 221
integrity, 39, 41, 206–8, 214, 217, 234 Louca, A., 172
intellectual feelings of knowing, 60 Luhmann, N., 76
intervention(s), 8, 13–14, 106, 166, Lupton, D., 16, 21, 24, 92–4, 99–100
174, 233, 241, 243, 249, 251
Maasen, S., 77
Jade Effect, 114, 131 MacDonald, H., 205
Jivaro, 192 Macdonald, M., 119
Johansson, S., 126 macro-oriented social constructivism,
Johnson, M., 60 4–5
jus ad bellum, 167–8 male agency, 92–9, 102, 106–7
jus in bello, 167–8 Markham, T., 117
just war theories, 167–9 Marshall, P. D., 122
Mayherhausen, T., 77
Kai, I., 39–40 McKee, A., 23
Kastenbaum, R., 95 McMath, J., 247
Kaufman, S., 142, 241 Mead, G. H., 37–8
Kavka, M., 119, 128 meaning, 2–6, 14–16, 21, 23, 30,
Kellehear, A., 217 35–48, 52, 55–8, 62–6, 69, 75–6,
Kevorkian, J., 98 93, 138, 162
276 Index
media culture and, 221

articulations of good death in, decentralisation of, 227–8
22–30 ethics of, 140–6, 148
audiences, 93, 114–15, 118, 122–5 miscarriage, 155
celebrity illness and death in, national identity and, 148–57
114–31 recognition of loss and, 144–5,
death in, 20, 54 149–50, 156–7
death in popular, 7 rituals, 142–3, 188
electronic, 221–35 ‘Mourning and Melancholia’ (Freud),
representations of corpses in, 75–89 138, 199
requested death in, 92–108 Mueller-Doohm, S., 81
social, 156, 221–35 murder, 42, 54, 98, 166, 174, 205, 209
medical practices, 155
medicalised death, 13–22 national identity, 148–57
medical-rationalism, 17–18, 20, 30 natural death, 21, 92, 250
medical-revivalist discourse, 18–19, network sociality, 222–3
30–1 Nissim, R., 40–1
medical science, 209–12, 216–17 nodal points, 15, 23, 25, 154, 163
medical technologies, 7–8 Noguchi, T., 81
memorialisation, 190–4, 200 Noland, C., 120
memory, 191–2, 253–5 Normandy military cemeteries,
collective, 214–18 149–54
memory work, 65–6 North Mission Road, 80
Menninghaus, W., 78, 87–8
mercy killing, 99, 103–4 old age, 78, 88, 101, 156
micro-oriented social constructivism, Omega, 95
4–5 One True Thing (film), 103–4
military cemeteries, 149, 150–4, 176–9 ordinariness, 117–23, 125–7, 130–1
military death, 43, 143–4 ordinary people, 115–16, 118–19, 130
Million Dollar Baby (film), 101 organ donation, 205–7, 211–18
minimally conscious state, 239–56 Orwell, G., 215
Minogue, K., 125 Ottoman Empire, 170
miscarriage, 155
mobilisation, 192–5 pacifism, 168
modernity, 16, 18–21, 104–6, 121 pain, 21, 40, 42, 59, 68–7, 209, 242,
Modigliani, A., 93 248
Moloney, G., 214, 217 palliative care, 20–1, 28, 186
Morgan, L., 241 Papadatou, D., 39
Morin, J. M., 228–31 paralysis, 101, 106
mortality, 30, 92–3, 97, 105–6, 186, Parry, J., 185–9, 191, 199
191, 211 peace, 167–8, 178–81
Mouffe, C., 3, 14–16, 21, 30, 138, performative theory, 63
161–4 physician-assisted suicide (PAS), 14
mourning, 3–9, 137–58 definition of, 108n1
automated, 156, 230 in film, 92–108
blocked, 141–3, 154–6 Kevorkian and, 98
collective, 142–5, 155, 157 pictorial images, 76–7, 100
conditions of possibility, 142–7, 157 political dimensions, 7–8
context for, 145–7, 154–7 popular media, see media
Index 277
Posch, W., 78 Robson, P., 225

possessive boundaries, 223 Russell, B., 168
post-positivist tradition, 260, 263–8 Ruthrof, H., 63–5
post-structuralism, 3–4, 15, 138–40
Potter, J., 99–100 sadism, 167
power relations, 42, 65, 206 saints, 207–8
Pratchett, T., 125 Santino, J., 190
pre-modernity, 16, 19–20, 206–8 Sappol, M., 216
Prince, S., 100 Sarenmaim, E. K., 40
Prinz, J., 56 Savitt, T. D., 210
Prior, L., 186–7 Scharff, C., 63
privatisation, 19 scientific developments, 156
Priya, K. R., 42 Seale, C., 17–19, 22, 24, 104, 106–7,
psychoanalysis, 63, 137–42, 155–7, 121–2, 129, 225, 261
191 self, 37–8, 169, 199
public displays, of mourning, 142–3 sex, 100–2
Shaw, R., 213
quantitative end-of-life care research, Shotter, J., 59
262–70 signifiers, 6, 13–15, 21, 26, 28–30, 87,
Quincy, M.E., 80 161–4, 168, 242
Quinlan, K.A., 97–8 social construction, 3–4
of death, 1–6, 186–9, 240, 259–69
radical contingency, 138–40 discourse theory, 13–31
Rai, A., 191 media and, 115
recognition, 39, 41, 86, 138, 142–5, radical contingency of, 139–40
149, 151, 154–7, 179, 189, 212, of vegetative state, 240–4
225–6 social constructionism, 1, 3–6, 8–9,
reflexive planning, 18 14, 42, 52, 69, 115, 123, 137, 221,
relational feelings of knowing, 59–60 240, 255, 259, 262–69
relationship bonds, 225–6 social constructivism, 5–6, 8–9, 13,
relationships, 222–9, 233, 251–3 34–7, 39, 41–8, 239, 255, 261–2,
religion, 54, 56, 59, 168, 188, 206–8, 266, 268
212 social death, 251–3
remembrance, 178, 190–2, 199, 225, social media, 156, 221–35
229–30 social movements, 43, 95, 97
Rempel, G., 39 social networking sites, 223–35
representation(s), 7, 15, 22, 28, 40, social norms, 155
53–4, 57–8, 62, 75–84, 87–9, 92, social phenomena, 137
98–100, 103, 121–3, 156, 166, social relations, radical contingency
212–18 of, 138–9
requested death, 92–108 social structures, 78–9
resiliency, 40 society, deathly construction of,
resolution, 253–5 185–200
ressentiment, 145, 155 soldiers, 148–9
revivalism, 22 sorcery, 187
Richardson, R., 209 soul, 253–5
right-to-die movement, 20–2, 26, 31, Soylent Green (film), 104
95, 97–8 spirit, 253–5
road deaths, 190–200 spontaneous shrines, 190–1
278 Index
Star, S. L., 43 tragic death, 8, 185–6, 190–200

Stefánsdóttir, I., 185 transitional objects, 230–3
Stefánsdóttir, V., 185–6, 190–200 Turkish Resistance Organisation
Strauss, A. L., 34–6, 38–9, 95, 108n3, (TMT), 169–70
123 Turner, G., 114–15
structural-hermenetic analysis, 81 Two Weeks (film), 103–4
subjectivity, 63, 69, 93, 137–8, 189,
199, 206 universality, 19, 164–5
subject position, 15, 23, 25 unspeakability of death, 52–69
suffering, 40, 143, 145, 248–49
suicide, 14, 54, 102, 166 see also van der Riet, P., 40
physician-assisted suicide (PAS) Van Esbeen, A., 24–30
surgeons, 210, 216 vegetative states, 240–56
symbolic interactionism, 3, 35–8 victim-hero dyad, 102–3, 107
sympathy, 191, 199 violent death, 8, see also murder
Syvertsen, T., 115 visibility-invisibility debate, 18–19
Voluntary Euthanasia Society, 94
tamed death, 16, 19
Taylor, A.-C., 192 Walker, I., 214, 217
technology, 9, 38–40, 43, 48, 53, 169, Walking on Water (film), 105
217, 221, 233 Walter, T., 114, 119–25, 128–30,
television, representations of corpses 224–8, 232
in, 75–89 Walters, G., 19–20
temporality, 68, 234 war, 43, 143–4, 148–9, 161, 166–9,
terminal illness 173–81
disclosure of, 43–8 Warburton Anatomy Act, 210
experience of, 40–1 war memorials, 148–54, 176–9
in film, 101 Waskul, D. D., 40
thanatological research, 1 West, A., 119, 128
thanatology, 1–9, 14, 35, 37, 61, 95, Wetherell, M., 57, 63, 99–100
233, 240, 259, 262, 267–9 Whitehead, A. N., 57
The Bramble Bush (film), 105 Williams, G., 45, 61
The English Patient (film), 104 witchcraft, 187
The Greatest Show on Earth (film), 94–5 World War I, 169, 215
theoretical sampling, 46–7 World War II, 169
Thomas, J., 124
Thomson, O., 167 youthfulness, 53, 87
Tierney, T., 97
Torfing, J., 15 Zettl, H., 78, 81, 87
traffic accident victims, 190–200 Žižek, S., 139

The Social Construction of Death - Interdisciplinary - Leen Van Brussel Nico Carpentier (Eds) - 2014 - Palgrave Macmillan - 9781349483136 - Anna's Archive

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Leen Van Brussel and Nico Carpentier

Part I The Social Construction of Death

1 A Discourse-Theoretical Approach to Death and Dying 13

2 Studying Illness and Dying through Constructivist

3 Feeling Bodies: Analysing the Unspeakability of Death 52

Part II Death in Popular Media

4 Representations of Corpses in Contemporary Television 75

5 Ladies’ Choice? Requested Death in Film 92

6 The Expertise of Illness: Celebrity Constructions and Public

Part III Political and Ethical Dimensions of Death

7 Death, Fantasy, and the Ethics of Mourning 137

8 Ethics, Killing and Dying: The Discursive Struggle between

9 On the Deathly Construction of Society 185

Part IV ‘Governing’ Death and the Dead

10 From Theft to Donation: Dissection, Organ Donation and

11 Digital Objects of the Dead: Negotiating Electronic Remains 221

12 ‘This In-Between’: How Families Talk about Death

Afterword: The Social Construction of Death: Reflections

7.1 Pathways of loss 147

5.1 List of English-language films containing a requested

Arnar Árnason is Senior Lecturer in social anthropology at the University

Daniel Ashton is Senior Lecturer in the School of Humanities and

Linda Liska Belgrave is Associate Professor of Sociology and Director of

Nico Carpentier is Associate Professor at the Communication Studies

Kathy Charmaz is Professor of Sociology and Director of the Faculty

Joachim Cohen is Medical Sociologist and a Postdoctoral Research

John Cromby is Psychologist at Loughborough University. Previously he

Margaret Gibson is Senior Lecturer in the School of Humanities, Griffith

Jason Glynos teaches Political Theory at the Department of Government,

Glennys Howarth is Professor of Health Social Science at Plymouth

Jenny Kitzinger is Co-director of the Cardiff–York Chronic Disorders

Celia Kitzinger is Co-director of the York–Cardiff Chronic Disorders

Fran McInerney is Chair of Aged Care at the Australian Catholic

Adele Phillips is a trainee clinical psychologist working in the NHS

Leen Van Brussel is a PhD candidate at Communication Studies

Tina Weber studied social science at Humboldt University of Berlin,

Death as a social construction

Humans have a complex – and possibly unique – relation to death,

Even when the social construction of death paradigm has gained a

Social construction, post-structuralism and thanatology

The thirteen contributions gathered in this volume approach death as

Varieties of social constructionism: macro/micro – the

As social constructionist/ivist approaches do not come with thematic

Outline of the book

book by introducing three different approaches towards theorising

Part I: the social construction of death

Part II: death in popular media

Part III: political and ethical dimensions of death

of medical intervention in the dying process on political agendas of many

Part IV: ‘governing’ death and the dead

Death, signs of: Relaxing of facial muscles, producing rather

autonomously’ through which the end-of-life is given meaning – often

Situating Laclau and Mouffe’s discourse theory

In order to analyse the construction of the medicalised death, I draw

social imaginary, is created, which pushes other meanings beyond the

Discourse theory and the contingency of death

On the following pages, I adopt Laclau and Mouffe’s discourse theory,

Constructing death: the medical-rational and the

Arguably, what is considered a lie in one particular society is not neces-

Constructing the good death

assumed ‘de-tabooing’ with reference to the death-awareness movement