Networked cancer : affect, narrative and measurement

210 Pages·2017·3.54 MB·English

by  Stage

n e t w o r k e d c a n c e r
Affect, Narrative and Measurement
carsten stage
Networked Cancer
Carsten Stage
Networked Cancer
Affect, Narrative and Measurement
Carsten Stage
School of Communication and Culture
Aarhus University
Aarhus, Denmark
ISBN 978-3-319-51417-8 ISBN 978-3-319-51418-5 (eBook)
DOI 10.1007/978-3-319-51418-5
Library of Congress Control Number: 2017939099
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A
cknowledgements
I published my first article on social media, affect and illness in 2013, and
this book is the result of my work on the subject over the s ubsequent
years.
First I want to thank all the (micro)bloggers, relatives and followers
whose narratives and communication I have written about and whom
I have talked to in relation to writing the book. Your honesty, openness
and willingness to share and interact during hard and emotional times in
your life has been a great help and inspiration. I have done my utmost
to establish contact and interact with (micro)bloggers and relatives men-
tioned in the book and to engage with the narratives in a respectful way,
but if my work still feels intrusive to anyone, I apologize. My intention
has been to understand and spread knowledge about new forms of cancer
narratives on social media, not to intrude, lurk or use intimate personal
narratives as dramatic material for research. Please contact me, if you feel
like commenting on or discussing this subject with me: [email protected].
I would like to thank my colleagues at Aarhus University who have
commented on and discussed the subject of the book—or its theo-
retical foundations—with me in research programmes, units, read-
ing groups etc.: Britta Timm Knudsen, Dorthe Refslund Christensen,
Christoffer Kølvraa, Camilla Møhring Reestorff, Birgit Eriksson, Tina
Thode Hougaard, Bodil Marie Stavning Thomsen, Christina Jerne and
Ann-Katrine Schmidt Nielsen. Also thank you to the Narrative Research
Lab at Aarhus University for commenting on parts of the book on vari-
ous occasions, especially Henrik Skov Nielsen, Stefan Iversen, Louise
v
vi ACKNOwLEDGEMENTS
Brix Jacobsen, Lasse Gammelgaard and Simona Zetterberg Gjerlevsen.
Furthermore, I would like to thank other Danish colleagues, who have
engaged in inspiring talks on affect, media and participation over the last
couple of years: Anne Scott Sørensen, Kjetil Sandvik, Karen Hvidtfeldt
Madsen, Charlotte Kroløkke and Dorthe Staunæs. A special thanks also
to international colleagues, who have offered me the opportunity to pre-
sent my work, especially Urs Stäheli and his research group on “Loose
Connections” who I met during a seminar on affect and methods at
Hamburg University in 2016, and Marina Grishakova who arranged
the conference on “Stories of Hope and Fear” outside Tallinn in 2016.
Also thank you to Noortje Marres, Celia Lury, Lisa Blackman, Sibylle
Baumbach, Nico Carpentier, Anu Koivunen and Deborah Lupton for
presentations or interactions that inspired me tremendously during my
work with the book. Parts of the chapters have been presented at various
conferences and seminars—in Aarhus, Tallinn, Hamburg, Copenhagen,
Paris, Amsterdam and Sydney—and I would like to thank all the people
who have engaged with my research at these occasions.
I am also grateful for the comments made by the many students on
my courses in media and cultural analysis, affect and emotion online and
event culture at Aarhus University. Their responses to and discussion of
examples from the book over the past few years has been very helpful
and enlightening.
Earlier versions of some of the chapters of the book have been pub-
lished previously. I would like to thank the editors and reviewers of the
journal K&K, as well as those of the edited collections Enterprising
Initiatives in the Experience Economy, published by Routledge, and
Mediating and Remediating Death, published by Ashgate, who com-
mented on earlier versions of three of the chapters. Chapter 2 is an
amended version of “The Entrepreneurial Illness Blogger” (2014) in
Enterprising Initiatives in the Experience Economy, eds. Britta Timm
Knudsen, Dorthe Refslund Christensen and Per Blenker (New York:
Routledge) 168–186, copyright © 2014. Chapter 3 is a heavily amended
and translated version of the Danish article “Sygdom på sociale medier”
(2015), published in K&K, 43, 120, p. 103–124. Chapter 6 is a revised
and extended version of “Online a-liveness” (2014) in Mediating
and Remediating Death, eds. Dorthe Refslund Christensen and Kjetil
Sandvik (Farnham: Ashgate, now Routledge), p. 199–216, copyright ©
2014. The introduction and remaining chapters were written exclusively
for this book.
ACKNOwLEDGEMENTS vii
Also thank you to AUFF (Aarhus University Foundation) for con-
tributing financially to the preparation of the manuscript and to Claire
Neesham for carefully proofreading the chapters along the way.
I will end with an enormous and unconditional thank you to my fam-
ily. Firstly, to Signe for her love, support and for—patiently and rigor-
ously—reading and commenting on every single page of the manuscript.
And for being willing to discuss and develop ideas and problems related
to the book as they occurred. Your help has been absolutely invaluable.
Secondly to our two wonderful sons, August and Marius, for doing what
they do so well every day: being their own funny, serious, honest, toler-
ant and playful selves.
Aarhus, Denmark Carsten Stage
February 2017
c
ontents
1 Introduction 1
2 Cancer Blogging and Connective Action 45
3 Virality, Measurement and Biological Citizenship 77
4 Cancer Selfies, Scans and the Metric Power
of Fascination 103
5 Beyond Narrative Relief: Anger, Loneliness
and Negativity in Cancer Blogging 131
6 Commemoration, Rhythm and the Problem
of Charismatic Succession 155
7 Conclusions 183
Index 195
ix
l f
ist of igures
Fig. 2.1 Antecedents, attributes and consequences of illness blogs 46
Fig. 2.2 Part of the webshop at The Knock On Effect 58
Fig. 3.1 Sutton as a viral topic measured in Google web searches 85
Fig. 3.2 Top words on the Facebook-page incl. comments 88
Fig. 4.1 Part of Iaconesi’s brain scan 106
Fig. 4.2 Bolin’s first cancer post from 5 July 2015 115
Fig. 4.3 warrior selfie 116
Fig. 4.4 Selfie of suffering 117
Fig. 4.5 Aesthetizing selfie 119
Fig. 4.6 Documenting affective responses 126
xi
CHAPTER 1
Introduction
This book explores the idea that new modes of narrating cancer are
evolving in the current era of networked self-expression, affective
engagement and measurement. In particular I set out to investigate
how the social role, visibility and value production around individual
cancer narratives change on social media. My main argument is that we
are currently witnessing the rise of a new type of personal and narrative-
affective cancer practice on social media, which adds to the existing gen-
res or types of cancer narratives. The book thus studies a tendency on
social media to intertwine personal illness experiences of cancer with
entrepreneurial activities that focus on using existential “contingencies”
(disease, misfortune) (Sarasvathy 2001) to establish projects of everyday
“history-making” (Spinosa et al. 1997, 2) with social, political or eco-
nomic goals. This is according to Sara Sarasvathy the entrepreneurial
spirit par excellence: to act on contingency in creative ways (Sarasvathy
2001). This entrepreneurial cancer practice, enacted by what I will call
“biological entrepreneurs”, of course still treats the disease as undesired,
but also seems to use it as a narrative and affective resource, which has
the potential to create economic, personal and social effect and change
(McCosker 2013, 133, 140). In other words this practice seems to use
biological states, and often the social media entrepreneur’s own body, as
the point of departure for raising awareness and creating value in rela-
tion to their disease.
Examples of the kind of practitioners referred to as “biological entre-
preneurs” would be bloggers like Jessica Joy Rees (1999–2012), Stephen
© The Author(s) 2017 1
C. Stage, Networked Cancer, DOI 10.1007/978-3-319-51418-5_1