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Identity Construction and Illness Narratives
in Persons with Disabilities

This book investigates how being diagnosed with various disabilities impacts
on identity. Once diagnosed with a disability, there is a risk that this label can
become the primary status both for the person diagnosed as well as for their
family. This reification of the diagnosis can be oppressive because it sub-
jugates humanity in such a way that everything a person does can be inter-
preted as linked to their disability.
Drawing on narrative approaches to identity in psychology and social sci-
ences, the bio-psycho-social model and a holistic approach to disabilities, the
chapters in this book understand disability as constructed in discourse, as
negotiated among speaking subjects in social contexts, and as emergent. By
doing so, they amplify voices that may have otherwise remained silent and use
storytelling as a way of communicating the participants’ realities to provide a
more in-depth understanding of their point of view.
This book will be of interest to all scholars and students of disability stu-
dies, sociology, medical humanities, disability research methods, narrative
theory, and rehabilitation studies.

Chalotte Glintborg is a scientist from Aalborg University, Denmark, who

specializes in rehabilitation psychology and holds a PhD in psychology. Her
research has centred on exploring first-person perspectives on the emotional
consequences of living with illness/disabilities, e.g. identity problems, distress,
shame, and depression, etc.

Manuel L. de la Mata is full professor in the Department of Experimental

Psychology at the University of Seville, Spain, and the head of the Laboratory
of Human Activity Research Group and holds a PhD in psychology. His
recent research has centred on the narrative construction of self and auto-
biographical memory in cultural context, and gender and culture.
Interdisciplinary Disability Studies
Series editor: Mark Sherry, The University of Toledo, USA

Disability studies has made great strides in exploring power and the body.
This series extends the interdisciplinary dialogue between disability studies
and other fields by asking how disability studies can influence a particular
field. It will show how a deep engagement with disability studies changes our
understanding of the following fields: sociology, literary studies, gender stu-
dies, bioethics, social work, law, education, or history. This ground-breaking
series identifies both the practical and theoretical implications of such an
interdisciplinary dialogue and challenges people in disability studies as well as
other disciplinary fields to critically reflect on their professional praxis in
terms of theory, practice, and methods.

Critical Disability Studies and the Disabled Child

Unsettling Distinctions
Harriet Cooper

Disability, Globalization and Human Rights

Edited by Hisayo Katsui and Shuaib Chalklen

Reimagining Disablist and Ableist Violence as Abjection

Ryan Thorneycroft

Identity Construction and Illness Narratives in Persons with Disabilities

Chalotte Glintborg and Manuel L. de la Mata

Disability and Citizenship Studies

Marie Sépulchre

Women with Disabilities as Agents of Peace, Change and Rights

Experiences from Sri Lanka
Edited by Karen Soldatic and Dinesha Samararatne

For a full list of titles in this series, please visit: www.routledge.com/series/

ASHSER1401
Identity Construction and Illness
Narratives in Persons with
Disabilities

Edited by
Chalotte Glintborg and Manuel L.
de la Mata
First published 2021
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
52 Vanderbilt Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2021 selection and editorial matter, Chalotte Glintborg and Manuel L. de
la Mata; individual chapters, the contributors
The right of Chalotte Glintborg and Manuel L. de la Mata to be identified
as the authors of the editorial material, and of the authors for their
individual chapters, has been asserted in accordance with sections 77 and 78
of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or
utilised in any form or by any electronic, mechanical, or other means, now
known or hereafter invented, including photocopying and recording, or in
any information storage or retrieval system, without permission in writing
from the publishers.
Trademark notice: Product or corporate names may be trademarks or
registered trademarks, and are used only for identification and explanation
without intent to infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
Names: Glintborg, Chalotte, editor. | Mata, Manuel de la, 1961- editor.
Title: Identity construction and illness narratives in persons with
disabilities / edited by Chalotte Glintborg and Manuel de la Mata.
Description: Abingdon, Oxon ; New York, NY : Routledge, 2021. |
Series: Interdisciplinary disability studies | Includes bibliographical
references and index.
Identifiers: LCCN 2020013236 (print) | LCCN 2020013237 (ebook) |
ISBN 9780367898717 (hardback) | ISBN 9781003021612 (ebook)
Subjects: LCSH: People with disabilities--Psychology. |
Identity (Psychology) | Narrative inquiry (Research method) |
Disability studies.
Classification: LCC BF727.P57 .I34 2021 (print) | LCC BF727.P57 (ebook) |
DDC 155.9/16--dc23
LC record available at https://lccn.loc.gov/2020013236
LC ebook record available at https://lccn.loc.gov/2020013237

ISBN: 978-0-367-89871-7 (hbk)

ISBN: 978-1-003-02161-2 (ebk)

Typeset in Times New Roman

by Taylor & Francis Books
Contents

List of contributors vii

1 Narrative inquiry in disability research 1

CHALOTTE GLINTBORG AND MANUEL L. DE LA MATA

2 Narrative identity is social context 7

MANUEL L. DE LA MATA, ANDRÉS SANTAMARÍA, MERCEDES CUBERO AND
ROSARIO CUBERO

3 Stories of self when living with aphasia in a digitalized society 20

HELENA TAUBNER, MALIN HALLÉN AND ÅSA WENGELIN

4 “We got a second chance”: Couple narratives after being affected

by an acquired brain injury 36
CHALOTTE GLINTBORG AND CECILIE M.S. THØGERSEN

5 Narrative identity and dementia: The problem of living with

fewer available resources 53
LARS-CHRISTER HYDÉN AND MATTIAS FORSBLAD

6 Recovery stories of people diagnosed with severe mental illness:

Katabatic and anabatic narratives 67
FRANCISCO JAVIER SAAVEDRA-MACÍAS

7 (Re)constructing identity after aphasia: A preliminary study

about how people with aphasia describe their selves 84
SARA YUSTE, ANDRÉS SANTAMARÍA, MERCEDES CUBERO AND
MANUEL L. DE LA MATA

8 Narratives and identity construction of children with

developmental speech and language disorders 104
KRISTINE JENSEN DE LÓPEZ AND RENA LYONS
vi Contents
9 Hope in offenders’ narratives of Attention Deficit Hyperactivity
Disorder (ADHD) 115
NICHLAS PERMIN BERGER AND LARS FYNBO

10 Conclusion and future perspectives 129

CHALOTTE GLINTBORG AND MANUEL L. DE LA MATA

Index 135
Contributors

Nichlas Permin Berger is a researcher at the Danish Center for Social Science
Research (VIVE) and part-time lecturer at Aalborg University who spe-
cializes in qualitative methods and narrative analysis of vulnerable groups’
encounters with welfare state services. He has a PhD in sociology. His
research concerns support and treatment, psychiatric diagnoses and iden-
tity, risk, responsibilization, and user involvement in social work practices.
Mercedes Cubero is Associate Professor in the Department of Experimental
Psychology at the University of Seville, Spain, and a member of the
Laboratory of Human Activity Research Group. She has a PhD in psy-
chology. Her recent research has centred on the cultural (re)construction of
identity in situations of vulnerability, including women after gender vio-
lence, the construction of healthy student identity in contexts of inequality
and social exclusion, and identity reconstruction after aphasia.
Rosario Cubero is Associate Professor in the Department of Developmental
and Educational Psychology at the University of Seville, Spain, and
member of the research group Laboratory of Human Activity. She has a
PhD in psychology. Her research has focused on the construction of edu-
cational knowledge and the analysis of social interaction in teaching-
learning processes. In recent years, she has developed research on the con-
struction of science in higher education, dialogic reflection in teacher
training, and the study of learner identity through narratives.
Manuel L. de la Mata is Full Professor in the Department of Experimental
Psychology at the University of Seville, Spain, and the head of the Laboratory
of Human Activity Research Group and holds a PhD in psychology. His
recent research has centred on the narrative construction of self and auto-
biographical memory in cultural context, and gender and culture.
Mattias Forsblad is a scientist from Linköping University who has specialized
in system perspectives on cognition and cognitive ageing in everyday life
circumstances for healthy individuals and people with dementia diseases.
He has a PhD in cognitive science.
viii List of contributors
Lars Fynbo is a senior researcher at the Danish Centre for Social Science
Research (VIVE) who specializes in qualitative analysis in the alcohol and
other drugs research field, and has a PhD in sociology. His research is
centred on risk as a social phenomenon and he often applies a user’s per-
spective when investigating risk. He has published research articles about
stigmatization processes, risk activities, and qualitative methods.
Chalotte Glintborg is a scientist from Aalborg University, Denmark, who
specializes in rehabilitation psychology and holds a PhD in psychology.
Her research has centred on exploring first-person perspectives on the
emotional consequences of living with illness/disabilities, e.g. identity pro-
blems, distress, shame, and depression, etc.
Malin Hallén is a senior lecturer at Halmstad University, Sweden, and has a
PhD in media and communication studies. Her research interests include
science and health journalism and media representations of health, with a
special focus on issues related to mental illness.
Lars-Christer Hydén received his PhD in psychology from the Stockholm Uni-
versity, Sweden. His current position is as professor of social psychology at
Linköping University, Sweden, and as director of Center for Dementia
Research (CEDER). His research primarily concerns how people with Alz-
heimer’s disease and their significant others interact and use language as a
way to sustain and negotiate everyday life and a sense of self.
Kristine Jensen de López is a professor at the Center for Developmental &
Applied Psychological Science, Aalborg University, Denmark and has a
PhD in developmental psychology. She carries out research on language
and communication in typically and atypically developing children, and is
director of Aalborg University’s children’s clinic for developmental com-
munication and language disorders. Related research areas are emotion,
social cognition development, and culture.
Rena Lyons is a certified speech and language therapist and senior lecturer in
the discipline of speech and language therapy, School of Health Science,
College of Medicine, Nursing and Health Science, NUI Galway, Ireland.
She has over 30 years of clinical, teaching, and research experience in speech
and language therapy in Ireland. She has used qualitative methodologies to
explore a range of research interest such as the lived experience of commu-
nication disability, parental perspectives, identity construction, the voice of
children with developmental speech and language disorders, and the social
models of disability.
Francisco Javier Saavedra-Macías is currently Associate Professor in the
Department of Experimental Psychology at the University of Seville,
Spain, and a member of the Laboratory of Human Activity Research
Group. He holds a PhD in psychology. He is also research fellow in the
Andalusian Public Foundation for the Social Integration of Persons
 List of contributors ix
with Schizophrenia. His recent research is centred on the study caring
processes in sociocultural settings, especially the discursive and com-
municational aspects.
Andrés Santamaría is Associate Professor in the Department of Experimental
Psychology at the University of Seville, Spain, and a member of the research
group Laboratory of Human Activity. He has a PhD in psychology. His
recent research has centred on the cultural construction of autobiographical
memory, cultural gender construction, and self-identity and migration.
Helena Taubner is a postdoctoral researcher at Halmstad University, Sweden,
and has a PhD in health and lifestyle with a specialization in disability
research. Her research interests include linguistic disabilities (aphasia),
narrative agency, literacy practices, and identity.
Cecilie M.S. Thøgersen is a PhD student at Aalborg University and Neuro-
center Østerskoven, Denmark, who specializes in the implementing of
rehabilitation psychology in clinical practice. Her work has centred on how
rehabilitation psychology can be implemented as a part of holistic rehabi-
litation after brain injury. Not only in relation to the person affected by the
injury, but also the caregivers and relatives.
Åsa Wengelin is a professor of Swedish language at the University of Gothen-
burg, Sweden, and has a PhD in linguistics. Her research interests include
reading and writing processes and practices, literacy acquisition and language
disorders, with a special focus on written language and linguistic accessibility.
Sara Yuste holds a MA in neuropsychology at the University of Seville, and
specializes in the intervention and therapy of people suffering. She is cur-
rently working as a neuropsychologist at the Association for the Rehabili-
tation of People with Aphasia (ARPA).
1 Narrative inquiry in disability research
Chalotte Glintborg and Manuel L. de la Mata

What is a narrative? There is no simple answer to this question. The term nar-
rative refers broadly to a variety of traditions and scientific disciplines. Most
often the term “narrative” is synonymous with “story”. However, there are dif-
ferent definitions of what a narrative is and must contain to be a narrative, as we
shall see in the following definitions.
A minimum definition of a narrative is that a narrative is a description of a
chain of events put in the order they occur with the intention to make a point
(Labov & Waletsky, 1967).

The narrative turn in social science

When reading about narrative inquiry, the narrative turn in social sciences is
often mentioned. By “turn” is meant a change in direction from one way of
thinking or being towards another.
The narrative turn in social sciences began in the early 1980s and encompassed
a general anti-positivist and often humanist approach to the study of human psy-
chology and culture (Plummer, 2001; Bruner, 1991; Riessman, 2008). In social
sciences and psychology, the metaphoric approach to narrative, and the under-
standing of “life as narrative”, were influential in the early days of the narrative
turn. From this perspective, thus, human life can be conceived as a story. Like all
stories, lives have plots. These plots (always “under construction”) organize the
facts of the past, make sense of the present, and project into the future.
One of the most outstanding representatives of the narrative turn in psychol-
ogy is Jerome S. Bruner. Bruner was a central figure in the so-called “cognitive
revolution” in the 1950s (see, for instance, Bruner, Goodnow, & Austin, 1956).
Two decades later, in the 1980s, Bruner became very critical with cognitive psy-
chology and its predominant (if not exclusive) interest in paradigmatic thinking
(Bruner, 1986). Instead, he became interested in narrative thinking, since para-
digmatic (logical) thinking is only part of human thinking. For Bruner, from
birth, human beings make sense of the world of ourselves and other people by
telling stories. Stories have characters, i.e. humanized characters, with motiva-
tions, mental states, goals, etc. We interpret other people’s behaviour not in terms
of cultural or stimulus–response relations, but in terms of mental states (beliefs,
2 Chalotte Glintborg and Manuel L. de la Mata
memories, expectations …). If we analyse any trivial everyday conversation, we
can only understand it by assuming that interlocutors are constantly attributing
mental states to each other (intentionality).
For Bruner, narratives are also constituents of the self (“self-making narra-
tive”), they are the raw material of life (Bruner, 2003b). From this perspective,
we can find self and identity elements in any conversation, however trivial it
may be. Stories are, thus, the core of human experience.
Since the 1980s, an increasing number of theorists in psychology and human
sciences have embraced this narrative stance. Across the diversity of perspectives in
this field, we can identify two general approaches (both theoretical and methodo-
logical) to narrative: small stories and big stories. Big stories are derived from
interviews, clinical encounters, autobiographical writing, and other situations in
which the individual is stimulated to reflect about her life from a somewhat distant
perspective. Small stories, in contrast, derive from everyday social exchanges
(Freeman, 2006). In general terms, the big stories approach is represented by
theorists from psychology (personality, clinical psychology, and sometimes from
cultural psychology) (Bruner, 2003a; Freeman, 2006; McAdams, 2001, 2015,
among others). The small stories perspective, in turn, is represented by scholars
from discursive psychology, sociolinguistics, etc. (Bamberg, 2004, 2011; Bamberg
& Georgakopoulou, 2008; de Fina, Schiffrin, & Bamberg, 2006; de Fina &
Georgakopoulou, 2012).
Among the representatives of the big stories approach we can mention Dan P.
McAdams. His theory is based on the concept of “narrative identity”. McA-
dams describes narrative identity as an internalized and evolving life story that
people create about themselves – their own personal myths. When we intend
people to understand us, we share our story, or parts of it, with them; when we
want to know who another person is, we ask them to share part of their story.
An individual’s life story is not an exhaustive history of everything that has
happened. Rather, we make what McAdams calls “narrative choices”. Our
stories tend to focus on the most extraordinary events, good and bad, because
those are the experiences we need to make sense of and that shape us. But our
interpretations may differ from person to person.
With regard to big stories, Freeman (2006) argues that big stories involve a
sort of distancing from everyday life activities (“life on holiday”), a reflection
about an individual’s life. For that reason, they can be considered valuable
tools for both individual reflection and narrative inquiry.
In contrast with the big stories approach, the “small stories movement” is
grounded in a functional perspective on narrative and language use in general
(Bamberg, 2011). Small stories researchers are interested in the social func-
tions that narratives perform in the lives of people; in how people actually use
stories in everyday, mundane situations in order to create (and perpetuate) a
sense of who they are.

Narratives are thus focused upon not as tools for reflecting on (chunks
of) lives but as constructive means that are functional in the creation of
 Narrative inquiry in disability research 3
characters in space and time, which in turn are instrumental for the
creation of positions vis-à-vis co-conversationalists. Narratives are also
aspects of situated language use, employed by speakers/narrators to
position a display of contextualized identities.
(Bamberg & Georgakopoulou, 2008, p. 379)

Small stories research, thus, is focused (and this is one of its most valuable
contributions in this area) on the analysis of identity in practice, on how people
display and rhetorically use identities in everyday discursive encounters. In other
words, on the micro-genesis of identities in cultural practices/contexts. This
approach contrasts with big story research, which analyses the stories as repre-
sentations of world and identities within them (Bamberg, 2011, p. 16).
From our perspective these two approaches to identity are complementary
and both are represented in this book. While big stories are often criticized
for being “abstract” and artificial, we agree with Freeman (2006), who argues
that, instead of being a problem, such “detached” nature of big stories creates
opportunities for understanding and making sense of one’s life beyond the
vicissitudes/immediacy of the present.

Why use narrative inquiry in disability research?

Health and illness research is an area where narrative work is increasing. One
example is the popular currency of “illness narratives” that has become part of
the way we can relate to our own and other’s illnesses. They can also include
relatives’ narratives on their illnesses and the effect on their lives. In the twenty-
first century, different media platforms (i.e. websites, blogs, twitter, Facebook
groups, etc.) has become a powerful means of spreading information, sharing
emotions, and creating illness communities (Squire, Esin, & Burman, 2013). The
medical-sociologist Arthur Frank suggested that our interest in illness narratives
had to do with the needs of ill people to have their sufferings recognized.
Personal illness narratives capture the individual’s suffering in everyday situa-
tions in contrast to medical narratives. During the 1980s psychologists and
sociologists explored the biographical disruptions and reconstitutions that follow
serious long-term illness (Bury, 2001). All types of illnesses affect a person’s
experience of self and continuity, i.e. an acquired brain injury is not only a cog-
nitive problem, but the person also changes his or her sense of self after this
experience. Thus, illness is often experienced as an intruding event upon an
ongoing life process. In narrative terms, the basic narrative threads of a person’s
life become broken and need to be reconstructed in telling new stories and
revising previous stories. In such new storylines, it becomes possible to encom-
pass both the illness and surrounding life events. Mattingly (2000) also describes
how story-making and narratives are influential factors in reconstructing identity
after illness. According to Mattingly, to tell a story about your illness can have a
healing effect (Mattingly, 2000).
4 Chalotte Glintborg and Manuel L. de la Mata
Narratives are one of the most important ways to make sense of our experi-
ences. When ill, narratives offer an experiential space to weave together personal
and medical concerns, where an individual can bind them together and integrate
them in her life stories to figure out what their illness means for them and what
can be done about it. Without the capacity to narrate, this process becomes
difficult. The impact of communication disability on self-identity has received
considerable attention in research investigating adjustment to aphasia (Shadden,
2005; Shadden & Koski, 2007; Silverman, 2011). Renegotiation of identity in
circumstances of aphasia depends on how people with aphasia and their close
relatives adapt to communication difficulties and, in this process, narratives can
play an important role (Shadden, 2005).
However, there is an implicit assumption that individuals with neurological
disabilities might find it hard to remember or narrate their past and may be
unable to define a sense of self or be agentic. However, focusing on the person
with the disorder as a participant engaged in interactions helps us con-
ceptualize the consequences of the neurological disorder less as an individual
problem but rather as something that is dealt with in everyday interactions
together with other persons (Hyden, 2014). New trends in narrative inquiry
includes studies on narrative identity in individuals with Alzheimer’s Demen-
tia (AD). Much research in AD, and other neurological diseases, has focused
on describing and explaining the declining cognitive and linguistic abilities.
Little research has focused on the ways persons with AD cope with these
losses. To add a narrative approach to AD helps us to conceptualize the
consequences of AD less as an individual problem than as something that is
dealt with in everyday interactions together with other persons. In a unique
study, Kemper and colleagues (1995) found that:

patients with AD are able to communicate more effectively with their

spouses’ help and assistance than they are able to alone. Spouses can
provide contextual cues for the participants, settings, and significant
events in the lives of the patient with AD.
(Kemper, Lyons, & Anagnopoulos, 1995, p. 219)

These findings are in line with sociocultural traditions, for instance Vygotsky,
who argued that the interaction between persons is the base for the child’s (and
adult’s) cognitive, linguistic, and social development (Bruner, 1985; Lave and
Wenger, 1991). Narrative inquiry has also been used to explore children’s
experiences. For example, it has been used to explore children’s experiences of
school (Westling Allodi, 2002), reading (Davis, 2007), bullying (Bosacki,
Marini, & Dane, 2006), sexual abuse (Mossige, Jensen, Gulbrandsen, Reichelt,
& Tjersland, 2005) and identity construction and meaning-making in children
with speech and language disorders (Lyons & Roulstone, 2017). A narrative
approach allows for a rich description of experiences and an exploration of the
meanings that the participants derive from their experiences. Narrative inquiry
amplifies voices that may have otherwise remained silent. Thus, the aim of this
 Narrative inquiry in disability research 5
book is to utilize storytelling as a way of communicating the participants’ rea-
lities to a larger and more in-depth understanding of the particulars of the
participants’ points of view. The knowledge gained can offer the reader a
deeper understanding of the subject material and extra insight to apply the
stories to their own context. Narrative inquiry has an underlying philosophy
that enables the illumination of real people in real settings through the “paint-
ing” of their stories.

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2 Narrative identity is social context
Manuel L. de la Mata, Andrés Santamaría,
Mercedes Cubero and Rosario Cubero

Before exploring the use of narratives in relation to different forms of dis-

ability, this chapter presents our conception of identity-self. This conception
is, in general terms, coincident with the notions of identity adopted in the
chapters of this book. Before describing in detail this conception, we will start
with a brief chronological-conceptual journey through the notion of identity-
self in psychology and social sciences. Far from being a comprehensive review
of the evolution of the concepts, we will try to identify some important tra-
ditions and theoretical approaches. Among them, we will especially focus on
narrative approaches to identity-self.
After that short journey through the concepts of self and identity we will develop
in more detail our conception of identity-self as distributed (situated), narrative,
and dialogical. This conception is based on scholars and theories such as McA-
dams, Bruner, rhetorical approaches to identity, and the Dialogical Self Theory.
After presenting the conceptual basis of our conception we are going to
address two issues that are, in our view, critical for any theorization about nar-
rative self-identity: the tension between continuity versus change and between
consistency and situatedness in self-identity and the role of the microsocial
versus the macrosocial.

Introduction: the notion of identity-self in psychology: a controversial

concept
The notions of identity and self have a long and controversial history in psychol-
ogy and social sciences. As complex and heterogeneous concepts, they have been
addressed by different disciplines and from different theoretical perspectives.
Although this is not the place for a comprehensive review of the evolution of the
concepts, we need to briefly refer to some of the main theoretical traditions in this
study. While in some cases the authors have predominantly use the term self, in
others they have employed the term identity (or identities, in plural).
The first author to speak about the self in psychology was William James
(1890). James’ notion of self was based on the distinction between the I (the
self as “knower” or the self as subject) and the me (the object to be known)
(Hermans & Gieser, 2011). After William James, the interest for the self in
8 Manuel L. de la Mata et al.
mainstream psychology decayed and even the use of the term practically dis-
appeared during the first half of the twentieth century. However, it persisted in
sociology, within the theoretical approach of symbolic interactionism, in the
works of George Herbert Mead (1934). Mead maintained the distinction
between the I and the me, although he introduced some changes with regard
to James’ theory. In this vein, Mead rejected a vision of the self as a mere
reproducer of social convention, highlighting its capacity for cultural innova-
tion (assigned to the I). The me, in contrast, was to be defined by the rules
and conventions of the “generalized other”. By introducing this concept,
Mead was emphasizing the intrinsically social nature of the self. For Mead
(and for William James, as well), the self could not be conceived as an iso-
lated entity, since the core of the self includes the others, both the close others
and society and its institutions.
It was during the beginning of the second half of the twentieth century that the
emergence of the so-called dramaturgic movement and, in particular ethno-
methodology, with Ervin Goffman (1967) as its main representative, put the self
at the centre of the stage, again. In coincidence with Mead, ethnomethodology
gave the priority to the social self. We must note that the conception of indivi-
dual and culture in ethnomethodology is based in the dramaturgic metaphor:
people are actors in a play that is represented before different audiences. The
existence of these different audiences and scenarios lead individuals to adopt
(perform) different identities. This implies to consider the self more as a
consequence than a cause of the performance. From this perspective, thus, there
is not an enduring sense of the self (Swann & Bosson, 2010).
During the 1970s and, especially, the 1980s, a neo-Jamesian conception of
the self emerged in psychology (Swann & Bosson, 2010). This conception has
recovered some of the central elements of James’ notion of the self, including
the recognition of its enduring dimension. After this theoretical turn, the
study of identity-self has consolidated in social and personality psychology.
In other areas of psychology, the term identity, more than self, has been
predominant. An example of this is the tradition rooted in Erik Erikson
(1950, 1968), and the tradition of the study of social identities, based on the
social identity theory proposed by Tajfel and Turner (1986) and the self-
categorization theory represented by Turner (1987; 1989, cited in Ellemers,
Spears, & Doosje, 2002). This tradition is focused on the role of social iden-
tities in intergroup relations (Vignoles et al., 2012).
Within the tradition of study of the self in social and personality psychology,
we can make a distinction between cognitive and narrative approaches. Cogni-
tive approaches conceive the self in terms of mental representations (Baumeister,
1998; Swann & Bosson, 2010), namely, as a set of cognitive structures (both
explicit or implicit) that enable the individual to make sense of the world s/he
lives in. These ideas and beliefs about what one is and may become constitute
self-concept (Oyserman, Elmore, & Smith, 2012). Together with the dimension
of self-knowledge, the self also includes a social component (social being and
reputation) and a self-regulation dimension (Baumeister, 1998).
 Narrative identity is social context 9
Within the narrative approaches, we must mention authors such as Dan P.
McAdams, Katherine Nelson, Robyn Fivush, and Jerome S. Bruner, among many
others. McAdams has proposed a multilevel approach to personality in which
identity represents the third/highest level of analysis. In this vein, McAdams dis-
tinguishes between self and identity and defines identity as a life story (McAdams,
1993, 2001). McAdams’ approach, influenced by Erikson, as well, has put the
emphasis on the role of cultural factors (and, specifically, cultural narratives) on
identity (McAdams, 2006; McAdams & McLean, 2013; McLean & Syed, 2015).
The focus on the role of culture is characteristic of authors such as Katherine
Nelson and Robyn Fivush, from developmental psychology (Nelson & Fivush,
2004; Fivush & Nelson, 2006; Fivush, 2011), as well. While it is possible to trace
back Erikson’s influences in these authors, their main interest is to develop a
sociocultural theory of the self, strongly influenced by the works of Lev S.
Vygotsky (1978; Wertsch, 1985).
The interest for the cultural dimension of the self is shared with authors and
theories from cross-cultural psychology, anthropology, and cultural psychology.
Cross-cultural approaches to the self are largely influenced by the seminal work
of Markus and Kitayama (1991) and their distinction between the independent
and interdependent self, subsequently developed and criticized by scholars such
as Kagitçibaşi (2007, 2017), Keller (2007), and Greenfield (2009), among others.
Together with the theories developed in cross-cultural psychology, we can also
mention some approaches from anthropology (Shweder & Bourne, 1984).
Finally, within the field of cultural psychology, we cannot forget the contribution
of Jerome S. Bruner (1990, 2002, 2003). In the next section we are going to fur-
ther develop Bruner’s conception of the self.
Within narrative approaches to identity-self, there are also another two lines
that have contributed to theorizing about identity-self and are represented in this
book. We can call them rhetorical and dialogical approaches. Although both
share a large number of ideas with the narrative approaches mentioned so far, it
is interesting to highlight some specific contributions from each line.
The antecedents of rhetorical approaches to identity-self can be traced back to
theories such as Wittgenstein’s philosophy of language, post-modern philosophy
or post-structuralist social theory (Vignoles, Schwartz & Luyckx, 2012) and
discursive psychology (Potter & Wetherell, 1987; Edwards & Potter, 1992;
Wetherell, 2010; Nentwich & Morison, 2018), among others. Social positioning
theory, which represents a major contribution to the study of narrative identity,
can be framed in this perspective (see Bamberg, 1997, 2011 or de Fina and
Georgakopoulou, 2015 for a more extensive account of this theory).
Finally, dialogical approaches to narrative self are represented by Dialogical
Self Theory (Hermans, Rijks, & Kempen, 1993; Hermans, 2001; Hermans &
Gieser, 2011). This neo-Bakhtinian (Bakhtin, 1986) approach considers the self
as a dynamic multiplicity of I-positions that enter into dialogue. As we shall
develop later, these I-positions that constitute the self are legitimized by indivi-
dual and social voices, so that the self is constituted as a true “society of mind”.
10 Manuel L. de la Mata et al.
Although the above distinction among traditions and theoretical approaches
is useful for the purpose of organizing a complex and heterogeneous field like
this, we must not forget the considerable overlap among the previous lines, which
have extensively influenced each other. This intersection makes it in many cases
difficult to frame specific theories and authors within one line or another.
Besides the conceptual roots of the theories, an important issue that
characterizes and differentiates them is the position they take in relation to the
dilemmas between stability and change and adjustment to situations (situated-
ness) of identity-self. In this regard, while cognitive theories emphasize the
stability of the self through time and situations (taking what Swann and Bossom
have called a neo-Jamesian approach), in general, narrative approaches hold a
different position towards this dilemma, putting the emphasis on situatedness
(Bamberg, 2011; de Fina & Georgakopoulou, 2015) and/or defining stability in
terms of narrative continuity or coherence (Habermas & Bluck, 2000; McAdams
& McLean, 2013). In the next section we shall return to this issue.

A distributed, narrative, and dialogical view of self-identity

The main antecedents of our notion of the self can be found in James and
Mead, as well as Bakhtin. From this perspective, rather than considering the
self as a cognitive entity (a set of knowledge representations, Baumeister,
1998), something homogeneous and stable located in the individual, we con-
ceive the self as a dynamic construction, with three main characteristics:
situated (distributed), narrative, and dialogical. In the following we are going
to refer to each of these characteristics
With regard to the situated character of self-identity, Bruner (1995) advo-
cates for the distributed nature of the self. For him, the self can be defined as
a “sum and swarm of participations” (1990, p. 107). For Bruner, the self is
continuously reconstructed to adjust to the characteristics and needs of the
situations in which human beings participate (Bruner, 2002).
As Bruner (1995) claims:

there is no such thing as an intuitively obvious and essential self …

Rather we constantly construct and reconstruct ourselves to meet the
needs of situations we encounter, and we do so with the guidance of our
memories of the past and our hopes and fears for the future. Telling
oneself about oneself is like making up a story about who and what we
are, what has happened, and why we are doing what we are doing.
(p. 210)

Bruner’s emphasis on the distributed nature of the self has points in common
with small theories approaches to narrative identity (Bamberg, 2006; Geor-
gakopoulou, 2006; Bamberg & Georgakopoulou, 2008; de Fina & Georga-
kopoulou, 2015, see Chapter 1 in this volume). This approach puts the focus
on the study of “narratives-in-interaction, the way stories surface in everyday
 Narrative identity is social context 11
conversation (small stories), as the locus where identities are continuously
practiced and tested out” (Bamberg, 2011, p. 15). These stories are situated to
meet the requirements of the context and the purposes they are told for.
The above idea connects with the second quality of the self, its narrative
structure, what Bruner calls the “storied self”. For Bruner (1990), when we
ask people how they are, they usually tell a variety of stories, using the tradi-
tional elements of narrative, conceived both as a way of discourse and as a
way of organizing experience (a way of thinking). These narratives involve a
sequence of actions carried out by characters who act on behalf of mental
states (beliefs, emotions, memories, intentions, expectations …). In this sense,
for Bruner every story includes two complementary aspects or dimensions
(two landscapes, in Bruner’s words), the landscape of action (including goals,
causes and temporal sequence) and the landscape of consciousness (that
includes motives, mental states, motivations and evaluations).
In a related vein, McAdams (2001; McAdams & Olson, 2010), distin-
guishes self and identity. While for McAdams the notion of self is broader
and comprises not only narrative components (i.e. self-concept, self-esteem,
etc.), identity is a life story. In McAdams’ words:

identity itself takes the form of a story, complete with setting, scenes,
character, plot, and theme. In late adolescence and young adulthood,
people living in modern societies begin to reconstruct the personal past,
perceive the present, and anticipate the future in terms of an internalised
and evolving self-story, an integrative narrative of self that provides
modern life with some modicum of psychosocial unity and purpose.
(McAdams, 2001, p. 101)

As we shall develop in the next pages, narrative provides a solution to the

dilemmas of continuity versus change and consistency versus situatedness.
Instead of attributing any kind of pre-existing continuity or consistency to the
self, narrative approaches conceive continuity and consistency as narrative con-
structions. In this sense, rhetorical approaches state that when confronted with
the criticism of lack of continuity or consistency between situations, people con-
struct accounts (stories) to “demonstrate” consistency or, at least, to make the
changes undergone across time and situations understandable (see, for instance,
Billig, 1987 or Edwards and Potter, 1992 for a further elaboration of this issue).
Narratives of the self are socially, culturally, and historically framed. In their
exchanges with significant others in sociocultural settings, individuals appro-
priate cultural narratives from the “menu of stories” (McAdams, 2006) provided
by culture. These master narratives provide the guidelines for the development of
narrative identity (McAdams & McLean, 2013; McLean & Syed, 2015).
The third characteristic of the self mentioned above is its dialogical nature. This
idea has its roots in the works of the Russian semiologist Mikhail Bakhtin (Bakh-
tin, 1973, 1986). For Bakhtin, language is, by definition, polyphonic. Any linguistic
production (utterance), although produced by a specific individual, expresses a set
12 Manuel L. de la Mata et al.
of voices (besides the individual’s). These “speaking personalities” or “speaking
consciousness” (Emerson & Holquist, 1981, in Wertsch, 1991) involve viewpoints,
worldviews that individuals assume and express through their own voices.
Based on Bakhtin’s ideas, Hermans has proposed the notion of dialogical self.
For the Dialogical Self Theory (Hermans, 2001, 2003; Hermans & Gieser, 2011),
the self can be understood as a “dynamic multiplicity of I-positions” (Hermans &
Gieser, 2011, p. 2) that individuals adopt in relation to and involving the sig-
nificant others. But when people speak they do not only position themselves in
relation to other people. They also position other people, which, in turn, do the
same with them. The notion of position is then, very dynamic, intrinsically
linked to acting in specific contexts and changing with time.
From this perspective, the I emerges from its encounters with others within the
social and cultural context. In these encounters the I is moving from one position
to another, depending on the characteristics and requirements of the situations.
Moreover, I-positions are voiced (in Bakhtin’s terms), which means that move-
ments and exchanges between I-positions imply dialogical exchanges between
voices. For Hermans and Gieser, the voices behave like the interacting characters
in a story or a movie, involved in complex processes of agreement–disagreement,
negotiations, conflicts, etc.
The vision of the self presented above requires, in our opinion, a multilevel
approach to its analysis. From our perspective, the study of the self cannot be
exclusively focused on the analysis of the individual, as if it were a separate entity,
regardless of the interactions with other people and the sociocultural practices
people participate in. On the contrary, we assume that the very definition of the self
and, therefore, its study, must be carried out at three planes of analysis: the indivi-
dual, the interpersonal, and the sociocultural plane. This theoretical-methodologi-
cal approach is at the core of the sociocultural approach to the human mind
(Vygotsky, 1978; Wertsch, 1985, 1991). According to this theoretical framework,
the definition and the study of self-identity must go beyond the isolated individual
and encompasses the individual, interpersonal, and sociocultural levels. In other
words, the analysis of the identity processes demands a vision of the self that is not
exhausted in the study of the resources, strategies, and capacities of individuals. It
must integrate both the analysis of the relationships that people maintain with their
close environment (which can act as models and as referents for identity processes),
as well as that of the cultural discourses and ideologies in which the narratives of
the self are framed. To construct the narratives of the self, individuals appropriate
cultural discourses and ideologies, whether to identify with or to resist them.

Key questions in the study of self-identity

After presenting the conceptual basis of our conception we need to address some
important issues in the study of narrative self-identity. These issues are more or less
explicitly dealt with across the chapters of this book. We refer to the tension
between continuity versus change and between consistency and situatedness in self-
identity and to the role of the microsocial versus the macrosocial in self-identity.
 Narrative identity is social context 13
From our perspective, the tension between continuity versus change is at the
core of identity construction and development and, for that reason, needs to be
addressed in identity theorization. For Bamberg (2011), the first dilemma that
any claim of identity must address concerns a sense of sameness across time in
the face of constant change through life. Since the theme of this book is identity
and disability, the next chapters describe situations in which people face experi-
ences that represent a rupture both in their lives and of those who live with them.
For that reason, the dilemma of continuity versus change or rupture, always at
the core of identity development, acquires, in these cases, a paramount impor-
tance. In this regard, while cognitive theories about the self emphasize continuity
(in the line of what Swann & Bosson (2010) have called a neo-Jamesian
approach to the self), narrative approaches put the focus on change and adjust-
ment to situations and/or re-conceptualize continuity in narrative terms (as nar-
rative coherence, for example). For Bruner (1990), narratives enable people to
make sense of the breaches with the canonical. Given that suffering a brain
stroke, being diagnosed with AD or aphasia or the rise of any other type of dis-
ability, undoubtedly represent a break in individuals and families’ lives, devel-
oping a story of the self (which, by definition, includes the others) that makes
sense of this breach and integrates both continuity and change in life becomes a
necessity in these cases. From a theoretical-methodological perspective, narrative
approaches to identity become especially appropriate to account for the way
individuals and families face the challenge for identity associated with disability.
Let’s briefly refer to these approaches more specifically.
As we explained above, McAdams (2001) conceptualizes identity as a life story.
Once individuals in Western societies construct a life story after adolescence,
these life stories are continuously being re-created through the life course. Not-
withstanding this continuous change, when faced with the question: “Am I the
same person that I was ten/twenty years ago?” people need to give a positive
answer or, alternatively, be able to trace back the changes since now to the past.
This “journey back” from the present to the past is made possible by auto-
biographical memory (Nelson, 2003; Santamaría & Montoya, 2008). To achieve
the goal of construing continuity, life stories have to be coherent. The concept of
narrative coherence goes beyond coherence between sentences, and refers to the
relationships between the elements of a text (the life story, in this case) at a
moment in time. According to Habermas (Habermas & Bluck, 2000; Habermas
& de Silveira, 2008), coherence should not be confounded with stability over time.
For this author, life stories must comply with four types of coherence: temporal,
causal, thematic, and coherence with the cultural concept of biography.
In rhetorical approaches to narrative identity, continuity and consistency are
conceptualized in a different way. For these approaches, the focus is to study
what participants do with narratives (de Fina & Georgakopoulou, 2015), that is
to go beyond the analysis of narratives as texts to analyse the social practice of
narration in sociocultural contexts (Bamberg, 2011). Since narratives are
accounts constructed in specific contexts that serve specific rhetorical purposes,
the task of narrative analysis is, rather than identifying the elements that remain
14 Manuel L. de la Mata et al.
stable across different versions of “the same story”, to establish how narrative
accounts are linked to the characteristics of the specific situations (the partici-
pants, the goals, the social practices in which the situation is embedded …) and
the ongoing actions in which these narrations are performed (Billig, 1987;
Edwards, 1997; Wiggins & Potter, 2008; Bamberg, 2011). From this standpoint,
consistency is regarded as a rhetorical issue. When questioned about the eventual
existence of inconsistences in different narrative accounts of events, people justify
these inconsistencies by using a variety of rhetorical resources (denying the con-
tradictions, claiming that the changes are forced by the situations, etc.).
Dialogical Self Theory also emphasizes the situated character of identities. In
this sense, since I-positions are related to specific situations and practices that
individuals participate in, this notion acknowledges the multiplicity of the self
(Hermans & Gieser, 2011). Notwithstanding that, Dialogical Self theorists claim
that the consistency and unity of the self is preserved, as well. To reconcile both
aspects, the theory speaks of the existence of both decentring and centring
movements of the I-positions. The decentring movements of the I involve taking
new positions across time and space. These new I-positions would have relative
autonomy, their own specific history in the self, and would show different devel-
opmental pathways. In a complementary way, the I appropriates some of these
positions while rejecting others (centring movements).
At the same time, to account for the way that the self integrates different
and sometimes conflicting I-positions, Dialogical Self Theory proposes three
notions: third position, meta-position and promoter position. A third position
let the self reconcile (eliminate, reduce, or mitigate) the conflict between two
contradictory positions. A meta-position, in turn, requires a reflective exercise
by which the individual take some distance from one or several positions.
This also enables the subject to look at different positions, making their lin-
kages visible. Adopting a meta-position may also help to solve eventual con-
flicts between I-positions, facilitating the further development of the self.
Finally, the concept of promoter position can be considered equivalent to
meta-position with regard to a temporal perspective. Typically, significant
others (whether close or distant, real or imagined) may play the role of pro-
moter positions, exerting long-lasting influences as promoters or anti-pro-
moters, thereby facilitating the development of existing positions or
generating new ones (Hermans & Gieser, 2011). By doing so, promoter posi-
tions have important influence on the development of the self.
Another key issue is related to the role of sociocultural influences on iden-
tity-self. In this sense, while all narrative approaches to identity-self attach
special importance to social and cultural factors, some interesting nuances
appear when we compare the way they consider this issue.
Authors such as McAdams (and Bruner, as well) are mostly interested in the role
of macrosocial (cultural) influences in narrative identity-self. In this vein, McA-
dams has focused on analysing individuals’ life stories to identify specific plots from
the menu of stories provided by culture. Among these plots, McAdams refers to the
“redemptive self” (McAdams, 2006) as characteristic of American culture.
 Narrative identity is social context 15
The redemptive self is an example of master narrative (McLean & Syed, 2015).
For McLean and Syed, the notion of a master narrative allows the researcher to
locate the study of identity in culture. For McLean and Syed, master narratives
are “culturally shared stories that guide thoughts, beliefs, values, and beha-
viours” (McLean & Syed, 2015, p. 323). They are not personal narratives, but
broader culture-specific stories that individuals can internalize or resist, whether
consciously or unconsciously. Master narratives are characterized by five general
principles (ubiquity, utility, invisibility, rigidity, and compulsory nature).
Rhetorical traditions, in turn, highlight the situated character of narrative
identities. They pay special attention to the immediate context (here-and-now)
in the process of production of narrative identity (de Fina & Georgakopou-
lou, 2015). In this sense, Bamberg (2004) has proposed three levels of posi-
tioning analysis. At level 1 he proposes to scrutinize the linguistic means used
to establish the characters and their relations within the story. In Bamberg’s
words, this aims to answer the question “How are the characters depicted,
and what is the story about (its theme)?” (p. 336). This corresponds to the
consideration of “narrative as text” (Georgakopoulou, 2006). In the second
level (positioning level 2), the focus is the analysis of the interactive work
between the participants in the interaction in which narration is produced.
For Bamberg, the relevant question for this level would be why a particular
story is being told at a specific point in the interaction. In so doing, the
interviewee is positioning herself in front of the interviewer.
Finally, positioning level 3 involves transcending both the narrative text
and the situation of narration to answer the question “Who am I?” (Bamberg,
2004, p. 336). In other words, the narrator positions herself vis-à-vis cultural
discourses (by embracing, criticizing, resisting them). In sum, performing an
identity in sociocultural context.
The Dialogical Self Theory (Hermans & Gieser, 2011) addresses the issue
through the notions of I-positions and voices. By looking at the movements
from one position to another over time, Dialogical Self scholars can examine
how identities are performed at the microsocial (face-to-face) level. On the
other hand, identifying the voices that articulate the I-positions (Santamaría,
Cubero, Prados, & de la Mata, 2013) allow researchers to analyse how cul-
tural narratives resonate in individuals’ narratives, enabling them to frame the
identities performed in everyday real situations in the cultural context.

Conclusion
In this chapter we have presented a theoretical approach in which identity-self is
conceptualized as distributed and situated, narrative and dialogical. From this
perspective, identities-selves cannot be understood and, thereby, studied only at
the individual level. Instead, we need to consider social interactions (including
the interaction between interviewer and interviewee) and the cultural practices in
which these interactions take place. Through participation in these socio-
culturally framed interactions, people engage in a continuous process of (re)
16 Manuel L. de la Mata et al.
constructing their life stories, vis-à-vis the social discourses (master narratives)
that provide guidelines for these life stories. Far from being a simple internalisa-
tion of the dominant master narratives, this process involves very complex and
bi-directional relations in which individuals embrace, resist, contest, and trans-
form master narratives from the menu of stories of their culture (McAdams,
2006). Narrative approaches to identity-self provide, in our view, both theoretical
and methodological tools to account for such processes. In the methodological
plane, the methods and techniques employed are predominantly qualitative
(semi-structured interview, focus-groups, observation of everyday interactions,
conversation analysis). Our proposal of employing qualitative methodologies for
the study of identity-self in relation to disability does not mean the rejection of
quantitative methodologies. On the contrary, we think that quantitative and
qualitative methodologies, rather than contradictory, are complementary, as
they enable to analyse different dimensions of identities and to answer different
questions about them. With regard to this issue, we agree with Monrad (2013)
when she claims that both kinds of methods enable the study of different aspects
of identity while remaining blind to others. More specifically, for this author
quantitative survey-based methodologies that rely on self-report and closed-
ended questions, such as questionnaires and scales, allow us to carry out sys-
tematic and standardized comparisons among individuals, making it possible to
examine patterns of identification in large populations and groups. These meth-
ods, however, do not allow to examine the performative, embodied, and narra-
tive character of identities (the processes of construction-negotiation of identities
in sociocultural settings), but “a condensation of some thoughts and feelings
with regard to the actual perception of self as performer of a specific role in the
form of abstract adjectives” (Monrad, 2013, p. 350). Qualitative methodologies,
in turn, have demonstrated their utility to account for the meaning that indivi-
duals (re)construct about themselves in sociocultural settings. This includes
aspects such as the narrative construction of continuity–discontinuity in life
stories, the way in which individuals appropriate master narratives (including
how they resist them) to construct their narrative identities-selves and the way
identities are performed in ongoing social interactions.

Acknowledgements
This chapter was written with the support of the research project funded by
the Government of Spain [PSI2016–80112–P] entitled “Challenges of the self:
Identity reconstruction in situations of inequality and social exclusion”.

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3 Stories of self when living with aphasia
in a digitalized society
Helena Taubner, Malin Hallén and Åsa Wengelin

Introduction
The stories we tell about ourselves constitute an interface between us and others.
Within this interface, those stories of self form our identities as we “keep our
narratives going” (Giddens, 1991). This way, identity and language are closely
intertwined since we use our linguistic abilities to tell our stories. What happens,
then, if a person suddenly loses large parts of his or her language, i.e. acquires
aphasia, due to a brain injury? Keeping a story of self going requires a certain
level of narrative agency, i.e. a person’s “capacity to make sense of herself as an
‘I’ over time and in relation to other ‘I’s” (Lucas, 2017, p. 123). In addition,
narrative agency is “the ability and opportunity to author one’s own narrative”
(Baldwin, 2005, p. 1023), i.e. a combination of the individual linguistic capacities
(“ability”) and social structures (“opportunity”) required to tell stories of self.
Without a certain level of narrative agency, our stories of self cannot be told,
since it is a “precondition for identity formation” (Lucas, 2017, p. 123). So, when
someone acquires aphasia, what becomes of their narrative agency, their stories
of self and consequently of themselves? In this chapter, stories of self authored by
people (in particular one young woman) with post-stroke aphasia are presented
and analysed.
People with aphasia have lost linguistic abilities overnight due to an
acquired brain injury (Papathanasiou, Coppens, & Davidson, 2017).
Although the variation in severity is large between individuals (Pedersen,
Vinter, & Olsen, 2004), they all have the sudden language loss in common.
Aphasia may affect talking and listening as well as reading and writing
(Johansson-Malmeling, Hartelius, Wengelin, & Henriksson, 2020), but possi-
bly no other aspects of the person’s intellect. In this sense, aphasia “masks
inherent competence” (Kagan & Simmons-Mackie, 2013) because persons
with aphasia may have relatively intact intellectual abilities but the aphasia is
“masking” their competence so that they cannot express their thoughts. Since
language is central to identity construction, and since narrative agency is
essential to author stories of self, acquiring aphasia entails a need of identity
re-negotiation (Corsten, Konradi, Schimpf, Hardering, & Keilmann, 2014;
Shadden, 2005; Shadden, Hagstrom, & Koski, 2008). People with aphasia
 Stories of self in a digitalized society 21
have to decide whether to embrace or reject an identity as being disabled
(Watson, 2002), i.e. decide whether to include aphasia in their new stories of
self or not. To make such a decision, they need to be able to manage certain
stigma symbols (Goffman, 1963) such as non-fluent speech or misspellings.
Taubner, Hallén, and Wengelin (2017) have shown that people with aphasia in
various ways manage such stigma symbols across three dimensions: content,
composition and context – or in the words of Kress (2003) “that which is to
be communicated” (content), “the modal realisation of the same” (composi-
tion), and “the site of appearance” (context).
In addition, someone who experiences a biographical disruption (Bury, 1982)
such as acquiring a brain injury may need to navigate certain identity dilemmas;
the constancy/change dilemma, the sameness/difference dilemma, and the agency/
dependency dilemma (Bamberg, 2011; Glintborg, 2015). Previous research
(Taubner, Hallén, & Wengelin, 2020) has shown that people with aphasia do
navigate these dilemmas in a constant struggle about what to include in their
stories of self. As a result, those stories are filled with contradictions. The studied
participants (Taubner et al., 2020) told stories in which they simultaneously were
the same as before they acquired aphasia and yet changed (constancy/change), in
which they were similar to others (e.g. other stroke survivors or “normal” people)
and yet different from them (sameness/difference), and in which they displayed
both power and weakness (the agency/dependency dilemma). Additionally, the
dilemmas were intertwined, constructing a complex narrative identity.
Not only do people who have acquired aphasia need to author new stories of
self in which the aphasia is taken into account – they also have to take on that
challenge without their former linguistic capacity. In terms of narrative agency,
their ability to author their own narrative is reduced at a time when they would
need a high level of narrative agency to process the trauma of having acquired a
brain injury. Their key to the identity re-negotiation, i.e. their language, has been
reduced when most needed (Shadden et al., 2008). The situation for people with
aphasia is, therefore, significantly different from those with disabilities or illnesses
that do not include linguistic difficulties (see e.g. Lam & Wodchis, 2010). It is
thus of great importance to include issues of language when studying identity
and disability. As put by Shadden et al. (2008, p. 14): “we need to understand
better the impact of the loss of communication facility at a time when it is most
needed to carry on the work of maintaining narrative self”.
The language we use to tell our stories of self does not only include spoken
words. Not least does it include different forms of writing, an activity which
during recent decades has become increasingly digitalized. At the time this chapter
is published, almost the entire Swedish population are internet users. For example,
98% have internet access in their homes and 95% own a smartphone (Swedish
Internet Foundation, 2019). In such a highly digitalized society, multimodal online
literacy practices – i.e. digitalized communication practices based on texts – are
central to everyday communication (Barton & Lee, 2013). Texts are no longer
merely a set of letters printed on a paper or on a screen. Rather, digital texts
include of a large variety of modalities such as links, emoticons, sounds, pictures,
22 Helena Taubner et al.
videos, or illustrations – i.e. they are based on multimodality (Kress, 2010). Navi-
gating this digitalized and multimodal communication landscape has become part
of our lifestyles and identities. We have grown accustomed to combining various
ways to communicate, including e.g. posting carefully selected pictures on social
media (see e.g. Forsman, 2017), sharing links to online newspaper articles, texting
messages based on emoticons, and using Google to search for quick answers to
almost anything – and people with aphasia are no exception (Taubner, 2019). As a
consequence of this digitalization, identity is “always online” (Cover, 2015) and
the stories of self told by people living in Sweden – including people with aphasia –
will include online aspects.
The aim of this chapter is to analyse stories of self authored by Swedish indi-
viduals with post-stroke aphasia, and to discuss the role played by multimodal
online literacy practices when telling these stories. The stories of self of one
participant in particular (here named Rosa) is used to illustrate the findings.

Method
In order to explore stories of self authored by people with aphasia, nine partici-
pants with aphasia were interviewed and observed online (see also Taubner et al.,
2017, 2020). All data collection was conducted by the first author. Ethical
approval was granted by the Ethical Review Board in Lund, Sweden (ref 2015/
109). The nine participants were aged between 24 and 56 when they acquired
aphasia, and at the time of their respective interview they were between 29 and
61. Three of them were male and the remaining six were female. When their
stories are told below, their names have been replaced with aliases: Rosa, Ellen,
Monica, Oskar, Einar, Malin, Frida, Johan and Sofia.
First, so-called Problem-Centred Interviews (Witzel & Reiter, 2012), or
PCIs, were conducted face-to-face individually with each participant. This
interview method aims at reconstructing knowledge about a relevant topic (a
problem) and it was chosen because of its focus on the participant’s “right to
be understood” (Witzel & Reiter, 2012, p. 82). The PCI procedure is based on
shifting between questions aimed to generate storytelling and comprehension.
Such an approach is suitable when interviewing people with language diffi-
culties, not least for ethical reasons, since it endorses the flexibility needed to
meet the communicative needs of the participants. This approach may be seen
as a contrast to the frequent exclusion of people with aphasia from research
about e.g. strokes or other acquired brain injuries (Townend, Brady, &
McLaughlan, 2007). We argue that it is ethically questionable to exclude
people with aphasia, and that it is up to us as researchers to adapt our
methods in order to include them (Brady, Fredrick, & Williams, 2013; Dale-
mans, Wade, van den Heuvel, & de Witte, 2009; Pearl & Cruice, 2017).
Adaptations are especially important when conducting qualitative research
aiming at listening to people’s stories – people with aphasia have the right to
be listened to despite of their linguistic difficulties. On the other hand, there is
a risk of oversimplifying and thus diminishing the person with aphasia. While
 Stories of self in a digitalized society 23
it is not ethically correct to exclude people with aphasia based on their difficul-
ties, it is also incorrect to, for example, talk exaggeratedly slow (Simmons-
Mackie, 2018). In this study, the participants had access to communication aids
of their choice. The interviews were conducted at a time and a place suggested by
each participant and they lasted between one and three hours. Great effort was
made to build trust between the participant and the interviewer (the first author)
and to ensure the ease and consent of each participant.
Then, after each interview, observations inspired by “nethnograpy”, i.e. ethno-
graphic research based on online fieldwork (Kozinets, 2015), were conducted to
collect online data from the participants in social media. Screenshots were
captured for online posts made by the participants, mainly on Facebook and
Instagram. These nethnographic observations were conducted using a retro-
spective or archival approach (Kozinets, 2015), which means that the researcher
“went back in time” to include data created before and up until the time of the
interview. In this way, the collected data has a high level of authenticity since the
participants were not influenced by being part of the study when they created the
posts. In addition, it was a time-efficient way of collecting data, since data from a
large time frame could be collected rapidly. In total, 1,581 screenshots were col-
lected (see also Taubner et al., 2017, 2020). One of the participants, Johan, had no
accounts in any observable online network and his online communication activ-
ities was limited to professional e-mails. His employer wouldn’t permit access to
his e-mails, so for ethical reasons no online data was collected. But since his
interview provided important information, he is still included in the analysis.
Collecting research data online raises a range of new ethical questions, not
least addressed by the Association of Internet Researchers (AoIR) Ethics
Working Committee (Markham & Buchanan, 2012). Research ethics as we
know it must be revisited to fit online settings. When collecting online data for
this study, we have made a number of ethical considerations which deserve some
further elaboration. First, there is the question of selecting an online forum to
study. Whether or not an online forum is suitable for data collection is a matter
of how open the forum is, i.e. whether or not it may be seen as a public space
(Sveningsson Elm, 2008). Or in the words of Zimmer (2010, p. 323): “just
because personal information is made available in some fashion on a social net-
work, does not mean it is fair game for capture and release to all”. The partici-
pants were members of a few Facebook groups for stroke survivors or people
with aphasia. But, since these groups were deemed semi-closed or in some cases
even closed, and since it was not possible to obtain consent from each forum
member, these forums were excluded from the data collection. Instead, we only
included the participants’ posts which were visible as their Facebook “friend”
without being part of any Facebook group. When relevant online forums have
been selected, consent must be obtained for each specific forum (Baker, 2013),
since practices, norm systems, and conventions vary across forums. Agreeing to
being observed on Facebook does not necessarily imply agreeing to being
observed on a dating site, for instance. For the present study, the participants had
the choice to give their consent for each specific forum.
24 Helena Taubner et al.
Next, there is the question of anonymity (see e.g. Israel, 2015; Zimmer, 2010).
The names and other personal information of the participants were anonymized,
and as suggested by Kozinets (2015) this anonymization also included online
aliases (e.g. Instagram handles). The question of anonymity is also affected by
the privacy settings of the researcher’s profile (Baker, 2013). If the relationship
between the researcher and the participant is visible to others, the fact that the
participant is taking part in the study may be revealed. To avoid these kinds of
revealing incidents, the first author created entirely new accounts with maximum
security settings to collect the online data. Related to anonymity is the question
of protecting third parties, which may seem straightforward but in fact it may
not be clear who the third party is. For instance, if a participant is mentioned in
someone else’s post, and the participant’s friends get to see the post because of
the “tag”, or if a participant shares a post written by someone else – who is the
sender of the post and who is the third party? On one hand, every person inclu-
ded in the data collection should have the possibility to give (or decline to give)
their consent. On the other hand, it is almost impossible to study communication
or interaction without including third-party communicators (Alderson &
Morrow, 2011). To sum up this discussion about online research ethics, an
awareness that online settings raise new ethical questions is needed from the
researcher’s part. In this sense, it is beneficial (if not crucial) for the researchers to
be familiar with the forums under study, in order to be sensitive to codes, norms,
and conventions (Zimmer, 2010). All three authors are active Internet and social
media users, which undoubtedly facilitated this study.
The collected material contains a large number of stories of self authored by the
nine participants. There is, of course, more to each story than could be fitted into a
chapter like this. But we agree with Bamberg and Georgakopoulou (2008) who
suggest that even “small stories” may be useful to discuss and analyse narrative
identity. Therefore, one participant in particular (here named Rosa), and a set of
“small stories” related to her, is used to illustrate the complexity of the ongoing
identity re-negotiation when living with aphasia. The other participants’ stories
are used to mirror – either by confirming or contradicting – Rosa’s accounts. Some
of the stories have previously been published more extensively. (Taubner et al.,
2017, 2020). Each of Rosa’s quotes have been translated from Swedish to English,
with an intention of imitating her specific linguistic style and ability.

Results
Rosa was 25 years old when she had a stroke, which eventually resulted in
aphasia. She could not move nor speak and she knew something was wrong.
She was taken to the hospital but it took several days before the medical staff
realized that she was in fact having a stroke.

Rosa: Like, it was bloody awful, you know, I know that something is wrong,
but … I couldn’t … like, stand up, I couldn’t do anything, so I just lay there
 Stories of self in a digitalized society 25
like … And then I woke up … Nobody understood that I was having a
stroke, you know (Taubner et al., 2020).

Rosa’s physical condition is not very affected by the stroke, but she can feel her
face being asymmetric due to right side hemiparesis. Although the hemiparesis is
minimal and probably rarely noticeable to others, she is worried that it will show.
She doesn’t like people staring at her, but when meeting people she often feels
that they look at her in a judgemental way. Although she is fully ambulant and
her appearance does not imply that she is a stroke survivor, she is afraid that
people will judge her based on how she looks. But, simultaneously, she is also
aware that she looks “healthy” enough to constantly have to tell people about
her difficulties because they are not very visible.
When the stroke occurred, Rosa was a student. Now, because of her fatigue
and aphasia, she is not able to neither study nor work, and she has no parti-
cular plans for the future. She describes her aphasia in terms of knowing what
to say but being unable to say it:

Rosa: … you KNOW that you can speak, because it’s like, kinda, it
comes, like and just works kinda. And then when it doesn’t WORK …
well, it is in here [points to her head]. But not here [points to her
mouth] … It is hard to accept, you know.

As a result, Rosa finds it difficult to interact with new people. She says she
used to be outspoken and social, but the aphasia has made her feel uncom-
fortable around new people:

Rosa: Yeah, well like, you have to like … it makes me really nervous and
stuff like, new people, I think, yuk that’s hard. New people, ouch!
Interviewer: Has it always been like that?
Rosa: No … I love meeting new people, very social, very, like outspoken
and like really … so, in that way it is hard. I think it is really hard to
meet new people.
Interviewer: Why has it become like this, you think?
Rosa: Because I can’t speak. Well, I can speak … [sigh].

She concludes that her difficulties meeting new people is caused by her aphasia,
saying “I can’t speak”, but then she also says “Well, I can speak …”. She seems
to be struggling with how to describe her linguistic abilities and disabilities. On
one hand, she cannot speak the way that she used to. On the other hand, she is
still able to speak to some extent (not least good enough to be able to participate
in the interview). Several of the other participants also express difficulties meet-
ing new people. Sofia, for instance, describes how people sometimes talk to her
in a diminishing way. She thus prefers meeting new people online, because it is
easier for her to interact there (Taubner et al., 2020).
26 Helena Taubner et al.
Another aspect of interacting with other people is that Rosa (as well as the
other participants) has to meet their expectations. She says that “everybody”
put pressure on her to be strong, but when she is at home alone she some-
times cries and feels weak:

Rosa: Everybody keeps saying that I am so damn strong and stuff, and
then you, then you kinda have to live up to everything they said, and then
you get very like … I want to be weak sometimes, too, and such, some-
times it is really hard to be weak and to cry and such, but yeah … when
I’m home/when I’m alone, then like …

When Rosa elaborates on her thoughts about her speech being changed, she adds
that she feels slower now. She does not understand jokes told by her friends
because she is not quick enough, leading to her feeling boring and uncomfortable.
She says – and the same thing is expressed by Frida (Taubner et al., 2020) – that
she used to be a fun person, but that she cannot be fun any longer:

Rosa: There was this party, last Saturday … and … then you get so
bloody nervous, like even though I know them, it is still hard … Like, I
have been a very like fun … a fun person, you know, which I am not
today. And that’s … this speed, sort of. Because of this, I turn very like, it
is really really really hard. It is also a loss, because I don’t understand like
“yeah but hehe” but I don’t get it, but then like [sigh]. And then I’m like
“ahaaaa”, you know, like that. But I may not even understand, maybe.
Interviewer: No, I see. It is like you miss out on the jokes?
Rosa: Yes, sometimes it’s like the joke, and then ME, and then … It is hard
too. Because I am not very quick any more, today (Taubner et al., 2020).

Feeling slow is an experience that Rosa shares with Johan. He too expresses
how his aphasia makes it hard for him to keep up with a conversation, espe-
cially if there are many people involved (Taubner et al., 2020).
Aphasia not only entails difficulties speaking (and listening), but possibly
also writing (and reading). Even before her stroke, Rosa had difficulties writ-
ing, and she says she has “diff- and hm-hm troubles” (referring to reading and
writing difficulties). But her former difficulties differ from those related to her
aphasia. She says she earlier used to make a few mistakes which are very
common to many Swedes, such as confusing the use of the pronouns “de”
(they) and “dem” (them) which are both pronounced “dom”. But now, she
finds it much harder to write, on a more general level. Before her stroke, Rosa
used to write poetry, but she cannot do that any longer:

Rosa: It is called something when you, I used to kinda write really really
much, like texts, poty/porety, and such … But yes, well, I used to write
REALLY much, so I miss that, writing and such …
 Stories of self in a digitalized society 27
Nevertheless, she does communicate a lot in writing. She has accounts on a
few different social media forums, of which she mainly uses Facebook. When
writing, she prefers to use her smartphone because of the built-in word pre-
diction software. Unfortunately, her smartphone is now broken and to write
she must use her computer or her tablet. She finds it more difficult because of
the reduced access to supportive tools like the word prediction.

Rosa: And this [smartphone] is so DAMN good, kinda, when I, so I don’t

have to kinda think how to, like e … a/c/t [pretends that she is spelling a
word], yeah well like that, kinda. Then I just find, kinda, and that amaz-
ing … But now [when the smartphone is broken] I really have to, like, SPELL
and so on, and shit that’s hard. And you just think, no, shit this is hard,
but … well it works sort of, but I find it easier to have this [smartphone].

Like Rosa, Malin also relies on technological tools such as word prediction
software when writing. But she, in contrast, prefers the one installed on her
computer over using her phone. There is a variety among the online writing
strategies of the other participants. On one end, there is Oskar who types
short and insufficient sentences without any ambition to conceal his aphasia
(Taubner et al. 2017). There is also Frida who uses Facebook as a platform
for raising awareness about stroke and aphasia (Taubner et al. 2017). On the
other end, there is Monica who only posts photos (on Instagram) from a first-
person perspective with very short captions. Her posts do not imply that she
has aphasia at all (Taubner et al. 2017). Rosa places herself somewhere in
between Oskar and Monica when she posts correctly written, although collo-
quial, texts which occasionally contain content about stroke and aphasia. She
does not try to conceal her aphasia, but on the other hand she does not want
it to be too visible either.
Rosa’s stories of self are complex, not least when it comes to the constancy/
change dilemma, i.e. the question of whether she is the same person as she was
before her stroke or not. On one hand, she says she is a different and better
person now but on the other hand she says that she grieves her old self. During
the interview, which takes place one-and-a-half years after her stroke, Rosa says
that she is definitely not the same person as before her stroke – that “it’s like day
and night”. Rosa even says she is a better person now (as does Frida), after the
stroke, and that her life is better. If she had to choose, she would choose her new
life (and self) over the former. She had been using drugs and the stroke gave her
an opportunity to become clean, which she now treasures.

Rosa: Well, it’s … I am not the same person, like … it’s like day and night.
Interviewer: In what way?
Rosa: Well, eh … Yeah, well … I … well, I am a HAPPY person. I have
never been grateful and like, I mean for life and such … but I think in a
different way today than before. Before the stroke, well … yeah, like … I
28 Helena Taubner et al.
have been an addict and such. No, so I am not, I am not like how it was
before or how I was. It seems so damn strange and like … or how to put it.

In fact, Rosa says she is so different now that her former self is dead, and
that she – despite being a better person now – grieves her lost self:

Rosa: Well, it’s like this, well, loneliness, like, and sadness. Yes, it is. It is very
very much sadness. It’s like [Rosa] will never again well, well … well, the old
[Rosa], she is dead you know. That’s a loss too, you know. And the talking
and … So damn much has, has kind of changed and so on, it’s like that.

Among the other participants, only Einar and Johan state being the same
person as before. They are also the only ones still working in their former
professions (Taubner et al., 2020). Both Ellen and Frida also express grief
over their lost pre-stroke selves (Taubner et al., 2020).
Rosa’s post-stroke self is so different to her pre-stroke self that she is planning
on changing her names (both first and surname). But because of her fatigue and
aphasia she finds it hard to contact the authorities, and she has not yet gone
through the administrative process of changing her names yet. As a con-
sequence, she still, for example, has her old name on her front door. On Face-
book, on the other hand, Rosa has created a new profile using her intended new
name. The stories presented on her new profile include being a stroke survivor
and having aphasia (for example manifested in pictures of her in the hospital bed
or of her damaged brain from her medical record), although she mostly posts
content about other topics. Her posts often contain a picture or a link and a
small caption, mostly written in a relaxed and colloquial way. She uses a lot of
emoticons, such as smileys and hearts, to complement her written texts.
Rosa carefully selects which information and pictures of herself to post
on Facebook – as does Frida who makes a clear distinction about what to
post about her stroke and aphasia on Facebook and on a dating site. On
Facebook Frida tells a detailed story about being a stroke survivor, but on
the dating site she leaves out all information about her brain injury
(Taubner et al. 2017). Rosa posts a lot of selfies on Facebook, in which
she wears make up and nice clothes and she looks into the camera which
she holds slightly above her face. But she avoids looking cheerful and
carefully chooses camera angles, in order to conceal her (minimal) hemi-
paresis. This strategy is shared with Ellen, who also avoids smiling in her
Facebook pictures in order to conceal her slightly lopsided face. In photos
where others are seen with a big smile, Ellen’s smile is much more modest.
Ellen says she chooses photos in which she looks good, excluding photos
in which she is smiling because her asymmetric smile would reveal her
hemiparesis and make her feel ugly. Her friends sometimes remark on her
never smiling in her selfies, implying that they think she looks boring.
Thus, both Ellen and Rosa seem to prefer to be perceived as boring or
unhappy (i.e. not smiling) over ugly (i.e. with a lopsided face), and hence
 Stories of self in a digitalized society 29
they conceal their smiles when posting selfies. Additionally, Rosa makes a
clear distinction between her stroke and a heart condition of hers. Because
of this heart condition, she has a post-surgery scar along her sternum,
which she (in contrast to her asymmetrical smile) occasionally proudly
displays in her selfies. Thus, she seems to wear her heart surgery scar with
pride, but feels ashamed of her stroke:

Rosa: I … like, I am not ashamed over things like this [points at the scar
from her heart surgery]. No but you think it is like it has to look good,
like, obviously … when I smile and such like, you have to kinda … So, so
if you look, like you really can see it [that the face is lopsided] if you
really look at me like. Of course, I want to look good, you know.

Posting photos on a Facebook wall is an asynchronous activity, but Facebook

also provides a possibility of interacting synchronously by using Messenger
for chatting. Rosa says she and her friends do chat on Messenger, but that she
gets tired when the conversations get too long. She tried to tell her friends,
but it seems to her like they do not understand and instead she makes up
white lies to end the conversation:

Interviewer: Do you and your friends use Messenger to chat?

Rosa: Eh, yes, we do. Yes, we do. But mostly kinda … well yeah, but like, I,
well, I kinda choose. If I don’t want to, I can, you see, when it gets long and
like … Sometimes I feel like they never will understand. That’s what’s hard.
So you try to make a like, a white lie, instead of telling them the truth.

In a similar way, Einar avoids using synchronous tools such as Messenger

because he finds it hard to write at an anticipated speed and pace (Taubner et
al. 2017). He also avoids writing by instead using the “like-button” on Face-
book, which gives him an opportunity to engage in communication with his
friends and show them his presence, without having to actually write (Taub-
ner et al. 2017).
To conclude, Rosa’s stories of self are complex and contradicting and they
vary across all three dimensions of composition (“the modal realisation”),
content (“that which is to be communicated”) and context (“the site of
appearance”). They, for instance, depend on who she is interacting with, what
tools she has access to and whether she is communicating online or offline.
Online she uses a large variety of tools and modalities (photos, emoticons,
links, etc.) which are not available to her when interacting offline. This range
of modalities gives her an opportunity to choose how to compose her stories
of self (e.g. how to arrange her selfies or which emoticons to include in a
caption) in different contexts, and this in turn makes it possible for her to
choose the content of her stories (i.e. whether or not to include being a stroke
survivor with aphasia). In fact, the online settings even provide her with an
opportunity to start a completely new story of self under a new name.
30 Helena Taubner et al.
Discussion
The stories of self authored by Rosa (and the other participants) show that her (as
well as the others’) ongoing identity re-negotiation is complex. Her stories include
various contradictions, which shows that she does recurrently negotiate what to
include in her stories of self (see also Taubner et al., 2017) and that she constantly
navigates identity dilemmas (see also Taubner et al., 2020). She tells stories of self in
which she makes a clear distinction between her pre- and post-stroke self. She says
that she used to be an outspoken and social person who loved to meet new people.
She was a fun person who was quick enough to make and understand jokes. She
was a person who wrote poetry. Neither of these aspects are included in her stories
about her present post-stroke self. Now she is instead shy and reserved when meet-
ing new people, and she misses out on people’s jokes, resulting in stories of self
which are about being asocial and boring. And although she had writing difficulties
before her stroke, she says she is now completely unable to write poetry. In fact, she
makes such a clear distinction between who she was before and who she is now that
she talks about her pre-stroke self as being dead and that she is planning to change
her names. But she has not gone through that process yet, meaning that she is still
officially identified by her old name. On the other hand, she has created a new
Facebook profile in which she uses her new intended name. Thus, offline she is in
some ways still perceived as the same person as before the stroke, but online she
tells a completely new story. Similarly, the other participants also author stories of
self about both being the same as they were pre-stroke and changed; they are both
the same and different in relation to others, i.e. both “disabled” and “normal”; they
display both dependency and agency (see also Taubner et al., 2020).
Rosa describes her new self as happier and more grateful than she was before
(but on the other hand she also says that she grieves her pre-stroke self). The main
reason for this big change is that the stroke gave Rosa an opportunity to leave her
drug addiction behind and become clean. She thus prefers her new self even with
the aphasia and other consequences of the stroke. When communicating online
(mainly on Facebook using her new profile) that is the story she tells, i.e. about
being sober but also being a stroke survivor with aphasia. She uses technological
tools to compensate for her writing difficulties (as a way to manage stigma
symbols) and she writes in a colloquial way which is socially anticipated way when
writing on Facebook. She chooses very carefully how to present herself in her
selfies – stating that she wants to look good – making a difference between her post-
surgery scar (which she proudly displays) and her slightly lopsided face (which she
conceals by not smiling). Thus, although she is grateful for her post-stroke self, she
is also ashamed over how the stroke has changed her appearance and she chooses
to conceal the stigma symbols which could reveal her aphasia and hemiparesis. She
thus conceals her disabilities in the composition dimensions but reveals it regarding
content. She may therefore be perceived both as a person with and without aphasia
and other consequences of her stroke, which is an example of how she navigates the
sameness/difference dilemma (Bamberg, 2011) – and it becomes clear that naviga-
tion of the dilemmas and stigma management are closely related.
 Stories of self in a digitalized society 31
The short comparisons to the other participants show that there is a variety of
strategies, even in such a small sample as this. As a way to navigate the constancy/
change dilemma (Bamberg, 2011), some of the participants (including Rosa)
mainly focus on being changed, while others tells stories about being the same
(mainly Einar and Johan, who also are the only ones who work in their pre-stroke
professions), and in addition each story contains contradictions. The participants
tell stories in which they are both the same and different in relation to others
(Bamberg, 2011), i.e. both “disabled” and “normal”. They simultaneously
embrace and reject a disability identity (Watson, 2002). In Rosa’s story, this
sameness/difference dilemma is manifested in her constant concerns about other
people’s perceptions of her. She is worried that they will judge her based on her
looks – even though the physical consequences of her stroke are barely visible. She
is grateful and proud of being a stroke survivor with aphasia, but at the same time
she does not want people to judge her based on her disabilities. This concern leads
her to arrange her Facebook selfies in a way that her hemiparesis is less visible. She
thus tells a story in which she presents herself as both “disabled” (mainly in the
content of her communication) and “normal” (mainly in the composition of her
communication). She does not want others to draw any conclusions about her
(dis)abilities based on what they see, but she wants to tell them when and how she
chooses to herself. Rosa is not unique when it comes to selecting very carefully
how to be portrayed in online photos. As mentioned, Ellen shares her experiences
and strategies, but they are also both part of a society in which young women are
expected to look and behave in certain ways online (Forsman, 2017). A third
dilemma is that the stories contained both dependency and agency (Bamberg,
2011). For instance, Rosa expresses an expectation from others that she should be
strong, but that she also wants to be allowed to feel weak. This may be one reason
that she sometimes makes up white lies to end (chat) conversations with her
friends. They expect her to be strong, so she prefers telling them that she has to go
over telling them that she feels weak.
The “small stories” (Bamberg & Georgakopoulou, 2008) presented in this
chapter highlight that linguistic aspects have to be taken into account when
studying identity and disability. The complexity of Rosa’s (and the others
participants’) stories of self are highly influenced by the aphasia. For example,
she finds it hard to interact with new people because of her difficulties
speaking. She feels slow and boring when she cannot keep up with their jokes.
Consequently, she cannot present herself as the person she wants to (and used
to) be. She says she used to be “a fun person, you know, which I am not
today”, meaning that others get a picture of her that differs from her own
idea of who she wants to be. The experience of being slow and thus being
perceived as boring or distant is shared with Frida, Johan, and Ellen. Not
only do they have to tell new stories of self in which they navigate being
stroke survivors with aphasia, they also have to author these new stories while
feeling unable to communicate in an anticipated way. Their language is lost
“when most needed” (Shadden et al., 2008). Another example is that Rosa
also describes herself as a person who used to write very much, including
32 Helena Taubner et al.
poetry, but who is now unable to write (although she actually writes a lot on
Facebook, for example). This is clearly a linguistic aspect of her stories of
self, since literacy practices are an important part of telling these stories. She
struggles with the anticipated speed and pace when writing synchronously (i.e.
chatting) with her friends, and instead of telling them about her difficulties
she makes up white lies to end the conversation. Thus, she prefers to be not
completely honest with her friends over revealing her disabilities. In these
situations, she tells stories of self that does not include aphasia because she
does not believe her friends would understand.
The chapter aims not only to analyse stories of self, but also to discuss the role
played by multimodal online literacy practices when telling these stories.
Throughout Rosa’s stories, it becomes clear that those practices are important to
her ongoing identity re-negotiation. She is part of a highly digitalized society in
which multimodal literacy practices are central (Barton & Lee, 2013) and in
which identity is always online (Cover, 2015). Through their large variety of
modalities, these online literacy practices provide opportunities for her to author
her own narratives despite her difficulties – i.e. they increase her narrative agency
(Baldwin, 2005; Lucas, 2017). Overall, the findings show that because of the
multimodality, the online literacy practices provide an opportunity for the par-
ticipants to express their stories of self in a more elaborate way than in offline
settings (Taubner et al., 2017, 2020). When communicating through for instance
Facebook, Instagram, or e-mail, the wide range of modalities (such as the pos-
sibility to post photos, videos, illustrations or emoticons, or to press a like-
button) provides an opportunity to choose tools that compensate some of the
difficulties of each individual. They may to a higher extent choose to commu-
nicate in ways that conceal or reveal their difficulties, depending on their abilities,
intentions, and ambitions. Whether a person with aphasia wants to tell a story of
self which include the linguistic difficulties or not, they may find ways to do so
when being involved in multimodal online literacy practices.
Narrative agency requires both abilities (on an individual level) and
opportunities (on a social level) to author one’s own narrative (Baldwin, 2005;
Lucas, 2017) and aphasia entails reduced linguistic abilities. But multimodal
online literacy practices, found for instance on Facebook or Instagram,
increase the opportunities for people with aphasia to author their own narra-
tive, more than offline and less multimodal practices do. When the opportu-
nities increase, in ways that may compensate for the person’s impaired
abilities, so does the narrative agency and hence also the possibility to author
stories of self. In other words, the large variety of modalities provided by
online platforms such as Facebook or Instagram gives people with aphasia an
opportunity to tell their stories of self despite their individual difficulties.
They can choose how to navigate identity dilemmas, how to manage stigma
symbols and whether to embrace or reject an identity as “being disabled”.
Without the multimodality, their stories would not be as rich or complex
because they would not have these options. The point is not that the partici-
pants choose to tell stories which displays their aphasia (and other aspects of
 Stories of self in a digitalized society 33
being a stroke survivor) or not, but that they – when being engaged in mul-
timodal online literacy practices – get to make that choice. The online multi-
modality provides an opportunity to show just how complex the stories of self
are when living with aphasia.

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 Mr. Puddlebox in immense horror: "Done what?"

"Broken in there," and Mr. Wriford jerked back his head in "there's"
indication, and Mr. Puddlebox, to his new and frantic alarm, found that a
large house stood within fifty paces of them, they in its garden.

"Why, you're—hup!"—cried Mr. Puddlebox—"Blink! Why, what to the

devil do you mean—broken in there? What are we,—hup, blink!—doing
here?"

"Why, we had a bet," said Mr. Wriford, looking over his prizes and
clearly much pleased with himself. "I bet you as we came down the road
that I'd break in here before you would. I took the front and you went to the
back, but you've been asleep."

"Asleep!" cried Mr. Puddlebox. "I've been drunk. I was drunk." He got
on his knees from where he sat and with a furious action fumbled in his
coat-tails. From them his bottle of whisky, and Mr. Puddlebox furiously
wrenched the cork and hurled the bottle from him. "To hell with it!" cried
Mr. Puddlebox as it lay gurgling. "Hell take it. I'll not touch it again. Why,
loony—why, you staring, hup! hell! mad loony, if you'd been caught you'd
have gone to convict prison, boy. And my fault for this cursed drink. Give
me those things. Give them to me and get out of here—get up the road."

"Let 'em alone!" said Mr. Wriford menacingly. "What d'you want with
'em?"

Mr. Puddlebox played the game learnt of experience. He concealed his

agitation. He said with his jolly smile: "Why, mean that I will not be beat at
anything by you or by any man. I will challenge you or any man at any
game and will be beat by none. You've been in and got 'em, boy; now, curse
me, I will equal you and beat you for that I will go in and put them back.
Play fair, boy. Hand over."

"Well, there you are," said Mr. Wriford, disarmed and much tickled.

"Out you go then, boy," said Mr. Puddlebox, gathering up the trinkets.
"Out into the road. You had none of me to interfere with you, and I must
have none of you while I go my own way to this."

Mr. Puddlebox took Mr. Wriford to the gate of the grounds, then went
back again in much trembling. An open window informed him of Mr.
Wriford's place of entry. He leant through to a sofa that stood handy, there
deposited the trinkets, and very softly shut the window down. When he
rejoined Mr. Wriford, fear's perspiration was streaming from him. "I've had
a squeak of it," said Mr. Puddlebox with simulated cheeriness. "Let's out of
this, and I'll tell you."

He walked Mr. Wriford long, quickly and far. While he walked he fought
again the battle that had been swift victory when he cast his bottle from
him; and in future days fought it again and met new tortures in each fight.

"Aren't you going to get any whisky?" asked Mr. Wriford when on a day,
pockets lined with harvest money, he noticed Mr. Puddlebox's abstinence.

"Whisky! Hell take such stinking stuff," cried Mr. Puddlebox and sucked
in his cheeks—and groaned; then put a hand in his tail-pocket and felt a
hard lump rolled in a cloth that lay where the whisky used to lie and said to
himself: "Two bottles—two bottles."

It was Mr. Puddlebox's promise to himself, and his lustiest weapon in his
battles with his desire, that, on some day that must come somehow, the day
when he should be relieved of his charge of Mr. Wriford, he would buy
himself two bottles of whisky and sit himself down and drink them. Into the
hard lump rolled in the cloth, and composing it, there went daily when his
earnings permitted it two coppers. When that sum reached eighty-four—two
at three-and-six apiece—his two bottles would be ready for the mere
asking.

Wherefore "Two bottles! Two bottles!" Mr. Puddlebox would assure

himself when most fiercely his cravings assailed him, and against the pangs
of his denial would combine luxurious thoughts of when they should thus
be slaked and fears of what might happen to his loony if he now gave way
to them.
 Much those fears—or the affection whence they rose—cost him in these
later days: swiftly their end approached. Much and more as summer passed
and autumn came sombrely and chill: swiftly their end as sombre day
succeeded sombre day, and they passed down into Cornwall and went along
the sombre sea. Village to village, through nature in decay that grey sky
shrouded, grey sea dirged: Mr. Puddlebox ever for tarrying when larger
town was reached, Mr. Wriford ever for onward—onward, on.

CHAPTER II

CROSS WORK

Ever for onward, Mr. Wriford—onward, onward, on!

Where, in the bright days, Mr. Puddlebox had taken the lead and
suggested their road and programme, now, in the sombre days, chill in the
air, and in the wind a bluster, Mr. Wriford led. He chose the roughest paths.
He most preferred the cliff tracks where wind and rain drove strongest, or
down upon the shingle where walking was mostly climbing the great
boulders that ran from cliff to sea. He walked with head up as though to
show the weather how he scorned it. He walked very fast as though there
was something he pursued.

Mr. Puddlebox did not like it at all. Much of Mr. Puddlebox's jolly
humour was shaken out of him in these rough and arduous scrambles, and
he grumbled loud and frequent. But very fond of his loony, Mr. Puddlebox,
and increasingly anxious for him in this fiercer mood of his.

There are limits, though: and these came on an afternoon wild and wet
when Mr. Wriford exchanged the cliff road for the shore and pressed his
way at his relentless pace along a desolate stretch cut into frequent inlets by
rocky barriers that must be toilsomely climbed, a dun sea roaring at them.
 "Why, what to the devil is it you're chasing, boy?" Mr. Puddlebox's
grumblings at last broke out, when yet another barrier surmounted revealed
another and a steeper little beyond. "Here's a warm town we've left," cried
Mr. Puddlebox, sinking upon a great stone, "and here's as wet, cold, and
infernal a climbing as I challenge you or any man ever to have seen. Here's
you been dragging and trailing and ripe for anything these three months and
more, and now rushing and stopping for nothing so I challenge the devil
himself to keep up with you."

"Well, don't keep up!" said Mr. Wriford fiercely. "Who wants you to?"

Mr. Puddlebox blinked at that; but he answered stoutly: "Well, curse me

if I do, for one."

"Nor me for another," said Mr. Wriford and turned where he stood and
pressed on across the shingle towards the next rocky arm.

Mr. Puddlebox sucked in his cheeks, felt at the hard lump in his pocket,
then followed at a little run, and caught Mr. Wriford as Mr. Wriford climbed
the further barrier of rocks.

"Hey, give us a hand, boy," cried Mr. Puddlebox cheerfully. "This is a

steep one."

Mr. Wriford looked down. "What, are you coming on? I thought you'd
stopped."

"You're unkind, boy," said Mr. Puddlebox.

Mr. Wriford, looking down, this time saw the blink that went with the
words. He jumped back lower, coming with reckless bounds. "I'm sorry," he
said. "I'm sorry. Look here, coming across this bit"—he pointed back to
their earlier stopping-place—"I felt—I felt rotten to think you'd gone."

"Why, that's my loony!" cried Mr. Puddlebox, highly pleased. "Come

down here, boy. Let's talk of this business."
 "But I wouldn't look back," said Mr. Wriford, "or come back. I've done
with that sort of thing."

"Why, so you have," said Mr. Puddlebox, rightly guessing to what Mr.
Wriford referred. "You can come down now, though, for I'm asking you to,
so there's no weakness in that. There's shelter here."

"I don't want shelter," said Mr. Wriford, and went a step higher and stood
with head and back erect where gale and rain caught him more full.

Mr. Puddlebox summoned much impressiveness into his voice. "Boy,"

said Mr. Puddlebox, "this is a fool's game, and I never saw such even with
you. Bring sense to it, boy. Tramping is well enough for fine days: winters
for towns. There's money to be found in towns, boy; and if no money,
workhouse is none so bad, and when we've tried it you've liked it and called
it something new, which is what you want. Well, there's nothing new this
way, boy. There's no work and there's no bed in the fields winter-time.
Nothing new this way, boy."

A fiercer drive of wind spun Mr. Wriford where he stood exposed. He

caught at a rock with his hands and laughed grimly, then stood erect again,
and pressed himself against the rising gale.

"Ah, isn't there, though?" he cried. "Man, there's cold and rain and wind,
and there's tramping on and on against it and feeling you don't care a damn
for it."

"Well, curse me, but I do," returned Mr. Puddlebox. "It's just what I do
mind, and there's no sense to it, boy. There's no sense to it."

"There is for me," Mr. Wriford cried. "It's what I want!" He turned from
fronting the gale. Mr. Puddlebox saw him measuring with his eye the height
where he stood from the ground, and called in swift alarm: "Don't jump!
You'll break your legs. Don't—"

Mr. Wriford laughed aloud, jumped and came crashing to his hands and
knees, got up and laughed again. "That's all right!" said he.
 "Boy, that's all wrong," said Mr. Puddlebox very seriously. "That's all of
a part with your rushing along as if it was the devil himself you chased; and
what to the devil else it can be I challenge you to say or any man."

Mr. Wriford took up the words he had cried down from the top of the
barrier. "It's what I want," he told Mr. Puddlebox. "Cold and not minding it,
and fighting against the wind and not minding it, and getting wet and going
on full speed however rough the road and not minding that. Cold and wind
and rain and sticking to it and fighting it and beating it and liking it—ah!"
and he threw up his arms, extending them, and filled his chest with a great
breath, as though he embraced and drunk deep of the elements that he stuck
to and fought and beat.

Mr. Puddlebox looked at him closely. "Sure you're liking it?" he asked,
his tone the same as when he often inquired: "Sure you're happy, boy?"

"Sure! Why, of course I'm sure. Why, all the time I'm thrashing along, do
you know what I'm saying? I'm saying: 'Beating you! Beating you! Beating
you!' and at night I lie awake and think of it all waiting outside for me and
how I shall beat it, beat it, beat it again when morning comes."

"Sit down," said Mr. Puddlebox. "I've something to say to you."

"No, I'll stand," said Mr. Wriford.

"Aren't you tired?"

"I'm fit to drop," said Mr. Wriford; and then with a hard face: "But sitting
down is giving way to it. I'll not do that. No, by God, I'll beat it all the
time."

Then Mr. Puddlebox broke out in exasperation and struck his stick upon
the shingle to mark it. "Why, curse me if I ever heard such a thing or knew
such a thing!" cried Mr. Puddlebox. "Beating it! I've told you a score time,
and this time I give it to you hot, that when you go so, you're spooked,
spooked to hell and never will be unspooked! 'Beating it, beating it, beating
it!' you cry as you rush along! Why, it's then that it is beating you all the
time, for it is of yourself that you are thinking. And that's what's wrong with
you, thinking of yourself, and has always been. And there's no being happy
that way and never will be. Think of some one else, boy. For God
Almighty's sake think of some one else or you're beat and mad for sure!"

Mr. Wriford gave him back his fierceness. "Think of some one else!
That's what I've done all my life. That's what locked me up and did for me.
I've done with all that now, and I'm happy. Think of some one else! God!"
cried he and snapped his fingers. "I don't care that for anybody. Whom
should I think of?"

"Well, try a thought for me," cried Mr. Puddlebox, relenting nothing of
his own heat. "I've watched you these four months. I've got you out of
trouble. Curse me, I've fed you and handled you like a baby. But for me
you'd like be lying dead somewhere."

"Well, who cares?" cried Mr. Wriford. "Not me, I don't."

"Ah, and you'd liker still be clapped in an asylum and locked there all
your days; you'd mind that. But for me that's where you'd be and where
you'll go, if I left you to-morrow."

Mr. Wriford cried with a black and angry face: "Well, if it's true, who
asked you to hang on to me? Why have you done it? If it's true, mind you!
For I've done my share. You've admitted that yourself. In the rows we've got
into I've done my share, and in the work we've done I've done more than my
share, once I've learnt the hang of it. Now then! That's true, isn't it? If
you've done so jolly much, why have you? There's one for you. Why?"

His violent storming put a new mood to Mr. Puddlebox's face. Not the
exasperation with which he had burst out and continued till now. That left
him. Not the jolly grin with which commonly he regarded life in general
and Mr. Wriford in particular. None of these. A new mood. The mood and
hue Mr. Wriford had glimpsed when, looking down from the barrier as Mr.
Puddlebox overtook him, and crying down to him: "I thought you'd
stopped," he had seen Mr. Puddlebox blink and heard him say: "You're
unkind, boy." Now he saw it again—and was again to see it before
approaching night gave way to following morn.
 Mr. Puddlebox blinked and went redly cloudy in the face. "Why?" said
he. "Well, I'll tell you why, boy. Because I like you. I liked you, boy, when
you came wretched up the Barnet road and thought there was one with you,
following you. I liked you then for you were glad of my food and my help
and caught at my hand as night fell and held it while you slept. Curse me, I
liked you then, for, curse me, you were the first come my way in many
years of sin that thought me stronger than himself and that I could be
stronger to and could help. I liked you then, boy, and I've liked you more
each sun and moon since. I've lost a precious lot in life through being what,
curse me, I am. None ever to welcome me, none ever to be glad of me, none
ever that minded if I rode by on my legs or went legs first in a coffin cart.
Then came you that was loony, that was glad of me here and glad of me
there, that asked me this and asked me that, that laughed with me and ate
with me and slept with me, that because you was loony was weaker than
me. So I liked you, boy; curse me, I loved you, boy. There's why for you."

This long speech, delivered with much blinking and redness of the face,
was listened to by Mr. Wriford with the fierceness gone out of his eyes but
with his face twisting and working as though what he heard put him in
difficulty. In difficulty and with difficulty he then broke out. "God knows
I'm grateful," Mr. Wriford said, his voice strained as his face. "But look at
this—I don't want to be grateful. I don't want that kind of thing. I've been
through all that. 'Thank you' for this; and 'Thank you' for that; and 'I beg
your pardon;' and 'Oh, how kind of you.' Man, man!" cried Mr. Wriford,
striking his hands to his face and tearing them away again as though scenes
were before his eyes that he would wrench away. "Man, I've done that thirty
years and been killed of it. I don't want ever to think that kind of stuff again.
I want just to keep going on and having nothing touch me except what hurts
me here in my body and not care a damn for it—which I don't. You're
always asking me if I'm happy, and I know you think I'm not. But I am.
Look how hard my hands are: that makes me happy just to think of that.
And how I don't mind getting wet or cold: that makes me happy, so happy
that I shout out with the gladness of it and get myself wetter. It's being a
man. It's getting the better of myself. You're going to say it's not. But you
don't understand. One man has to get the better of himself one way and one
another. With me it's getting the better of being afraid of things. Well, I'm
beating it. I'm beating it when I'm out here, tramping along. But when I'm
sheltering it's beating me. When you tell me—" He stopped, and stooping to
Mr. Puddlebox took his hands and squeezed them so that the water was
squeezed to Mr. Puddlebox's eyes. "There!" cried Mr. Wriford. "Grateful!
I'm more grateful to you. I'm fonder of you than any man I've ever met. But
don't tell me you're fond of me. I don't want that from anybody. When you
tell me that it puts me back to what I used to be. I'm grateful. Believe that;
but don't make me talk about it."

"I never did want you to," said Mr. Puddlebox. "Look here, boy. Look
how we begun on this talk. I told you to think of some one else, care for
some one else, and you broke out 'whom were you to care for?' and I gave
you, being cold and wet and mortal tired, I gave you 'For God Almighty's
sake care for me' and then told you why you should. Well, let's get back to
that. Care for me. Look here, boy. We were ten mile to the next village
along this devil of a place when we left the town. I reckon we've come four,
and here's evening upon us and six to go. Well, I can't go them, and that's
the end and the beginning of it. I'm for going back where there's a bed to be
had and while yet it is to be had, for they sleep early these parts. Wherefore
when I say 'for God Almighty's sake care for me,' I mean stop this chasing
this way and let's chase back the way we come. We'll forget what's gone
between us," concluded Mr. Puddlebox, reverting to his jolly smiles and
getting to his feet, "and I'll hate you and you'll hate me, since that pleases
you most, and back we'll get and have a dish of potatoes inside of us and a
warm bed outside. Wherefore I say:

"O ye food and warmth, bless ye the Lord: praise Him and magnify Him
for ever."

Mr. Wriford laughed, and Mr. Puddlebox guessed him persuaded once
again. But he set his face then and shook his head sharply, and Mr.
Puddlebox saw him determined. "No," said Mr. Wriford. "No, I'm not going
back. I'm never going back. If you want to know what I'm going to do, I'm
going to stay the night out here."

Mr. Puddlebox cried: "Out here! Now what to the devil—"

"I'd settled it," Mr. Wriford interrupted him. "I'd settled it when I thought
you'd gone back. There're little caves all along here—I saw one the other
side of these rocks. I'm going to sleep in one. I'd made up my mind when
you caught up with me. I'm going to do it."

Mr. Puddlebox stared at him, incapable of speech. Then cried: "Wet as

you are?"

"Wet as I am," said Mr. Wriford and laughed.

"Cold as it is and going to be colder?"

"Cold as it is and the colder the better."

"You'll stay alone," cried Mr. Puddlebox. "Curse me if I'll stay with
you."

"You needn't," said Mr. Wriford. "I'm not asking you to."

"But you think I'm going to," cried Mr. Puddlebox. "And you're wrong,
for I'm not. I'm going straight back, and I'm going at once, the quicker to
fetch you to your senses. I'm going, boy;" and in advertisement of his
intention Mr. Puddlebox began resolutely to move away.

Mr. Wriford as resolutely turned to the barrier of rocks and began to

climb.

"Come on, boy," called Mr. Puddlebox.

Mr. Wriford called back: "No. No, I'm going to stay. I'm going to see the
night through."

"You'll know where to find me," cried Mr. Puddlebox. "I'll be where we
lay last night."

Mr. Wriford's laugh came to him through the gathering gloom, and
through the gloom he saw Mr. Wriford's form midway up the rocks. "And
you'll know where to find me," Mr. Wriford called.

Mr. Puddlebox paused irresolutely and cursed roundly where he paused.

Then turned and stamped away across the shingle. When he reached the
rocky arm where first they had quarrelled he stopped again and again
looked back. Mr. Wriford was not to be seen.

"That'll go near to kill him if he stays," said Mr. Puddlebox. "And, curse
me, if I go back to him he will stay. I'll push on, and he'll follow me. That's
the only way to it."

They had spent the previous night in an eating-house where "Beds for
Single Men—4d." attracted wanderers. It was seven o'clock when Mr.
Puddlebox's slow progression—halting at every few yards and looking back
—at length returned him to it. He dried and warmed himself before the fire
in the kitchen that was free to inmates of the house.

"Where's your mate?" asked the proprietor. "Thought you was making
Port Rannock?"

"Too far," said Mr. Puddlebox; and to the earlier question: "He's behind
me. I'll wait my supper till he comes."

He waited, though very hungry. Every time the door of the kitchen
opened he turned eagerly in expectation that was every time denied.
Towards nine he gave up the comfortable seat he had secured before the
blaze and sat himself where he could watch the door. It never admitted Mr.
Wriford.

"What's the night?" he asked a seafaring newcomer.

"Blowing up," the man told him. "Blowing up dirty."

Mr. Puddlebox went from the room and from the house, shivered as the
night air struck him, and then down the cobbled street. Ten o'clock, borne
gustily upon the wind, came to him from the church tower as he turned
along the shore.

None saw him go: and he was not to return.

 CHAPTER III

WATER THAT TAKES YOUR BREATH

Mr. Puddlebox's landsman's eye showed him no signs of that "blowing

up dirty" of which he had been informed. A fresh breeze faced him as he
walked and somewhat hindered his progress; but a strong moon rode high
and lighted him; the sea, much advanced since he came that way, broke
quietly along the shore. "Why, it's none so bad a night to be out," thought
Mr. Puddlebox; and there began to change within him the mood in which he
had left the lodging-house. Seated there he had imagined a rough night, wet
and dark, and with each passing hour had the more reproached himself for
his desertion of his loony. Now that he found night clear and still, well-lit
and nothing overcold, he inclined towards considering himself a fool for his
pains.

An hour on his road brought change of mood again. The very stillness,
the very clearness that first had reassured him, now began to frighten him.
He began to apprehend as it were a something sinister in the quietude. He
began to dislike the persistent regularity of his footsteps grinding in the
deep shingle and to dislike yet more the persistent regularity of the breaking
waves. They rose about knee-high as he watched them, fell and pressed
whitely up the beach, back slowly, as though reluctant and with deep protest
of the stones, then massed knee-high and down and up again. Darkly on his
right hand the steep cliffs towered.

The monotony of sound oppressed him. He began to have an eerie

feeling as though he were being followed, and once or twice he looked
back. No, very much alone. Then his footsteps, whose persistent regularity
had wrought upon his senses, began to trouble him with their noisiness
upon the shingle. He tried to walk less heavily and presently found himself
picking his way, and that added to the eeriness, startling him when the loose
stones yielded and he stumbled.
 He approached that quarter where the shore began to be divided by the
rocky barriers that ran from cliff to sea. Then he apprehended what, as he
expressed it to himself, was the matter with the sea. It was very full. It
looked very deep. What had seemed to him to be waves rolling up now
appeared to him as a kind of overflowing, as though not spurned-out waves,
but the whole volume of the water welled, swelled, to find more room. The
breaking sound was now scarcely to be heard, and that intensified the
stillness, and that frightened him more. He began to run....

Mr. Puddlebox stopped running for want of breath; but that physical
admission of the mounting panic within him left him very frightened
indeed. He went close to the cliffs. Darker there and very shut-up the way
they towered so straight and so high. He came away from them, his senses
worse wrought upon. Then he came to the first of the rocky barriers that ran
like piers from the cliff to the sea, and then for the first time noticed how
high the tide had risen. When he came here with Mr. Wriford they had done
their climbing far from the cliff's base. Now the barrier was in great part
submerged. He must climb it near to the cliff where climbing was steeper
and more difficult. Well, there was sand between these barriers, that was
one good thing. Walking would be easier and none of that cursed noise that
his feet made on the shingle. With much difficulty he got up and looked
down upon the other side....

There wasn't any sand. Water where sand had been—water that with that
welling, swelling motion pressed about the shingle that banked beneath the
cliff.

Mr. Puddlebox said aloud, in a whisper: "The tide!" It was the first time
since he had started out that he had thought of it. He looked along the cliff.
From where he stood, from where these rocky piers began, the cliff, as he
saw, began to stand outwards in a long bluff. The further one went, the
further the tide would.... He carried his eyes a little to sea. Beneath the
moon were white, uneasy lines. That was where the sea swirled upon the
barriers. He looked downwards and saw the placid water welling, swelling
beneath his feet.

"The tide," said Mr. Puddlebox again, again in a whisper. He swallowed

something that rose in his throat. He ran his tongue around his lips, for they
were dry. He shivered, for the perspiration his long walk had induced now
seemed to be running down his body in very cold drops. He looked straight
above him and at once down to his feet again and moved his feet in
steadying of his balance: a sense of giddiness came from looking up that
towering height that towered so steeply as to appear hanging over him. He
looked along the way he had come; and he stood so close to the cliff-face,
and it bulked so enormously before him, that the bay he had traversed
seemed, by contrast, to sweep back immensely far—immensely safe.

Mr. Puddlebox watched that safety with unmoving eyes as though he

were fascinated by it. The longer he watched the more it seemed to draw
him. He kept his eyes upon one distant spot, half way along the bay and
high up the shore, and his hypnotic state presented him to himself sitting
there—safe. Still with his eyes upon it he moved across the narrow pier in
its direction and sat down, legs dangling towards the bay, in the first action
of descending. He twisted about to pursue the action, for he was a timid and
unhandy climber who would climb downwards facing his hold. As he came
to his hands and knees he went forward on them and looked across the fifty
yards of shingle-bank, the sea close up, that separated him from the next
pier of rocks. He was a creature of fear as he knelt there—a very figure of
very ugly fear, ungainly in his form that hung bulkily between his arms and
legs, white and loosely fat in his face that peered timorously over the edge,
cowardly and useless in his crouching, shrinking pose.

He said aloud, his eyes on the distant barrier: "I'm as safe there—for a
peep—as I am here. I can get back. Even if I get wet I can get back."

He shuffled forward and this time put his legs over the other side and sat
a while. Here the drop was not more than three feet beneath the soles of his
boots as they dangled. He drew them up. "If he's safe, he's safe," said Mr.
Puddlebox. "And if he's drowned, he's drowned. Where's the sense of—"

Something that floated in the water caught his eye. A little, round,
greyish clump. About the size of a face. Floating close to the shore. Not a
face. A clump of fishing-net corks that Mr. Puddlebox remembered to have
seen dry upon the sand when first he arrived here. But very like, very
dreadfully like a face, and the water rippling very dreadfully over it at each
pulsing of the tide. Floated his loony's face somewhere like that? Struggled
he somewhere near to shore as that? The ripples awash upon his mouth? His
eyes staring? Mouth that had laughed with Mr. Puddlebox these several
months? Eyes that often in appeal had sought his own, and that he loved to
light from fear to peace, to trust, to confidence, to merriment? Floated he
somewhere? Struggled he somewhere? Waited he somewhere for these
hands which, when he sometimes caught, proved them at last of use to some
one, stronger than some one else's in many years of sin?

Mr. Puddlebox slid to the shingle and ran along it; came to the further
barrier and got upon it; stood there in fear. Beyond, and to the next pier,
there was no more, between sea and cliff, than room to walk.

His lips had been very dry when, a short space before, looking towards
where now he stood, he had run his tongue around them. They were moist
then to what, licking them again, his tongue now felt. Cold the sweat then
that trickled down his body: warm to what icy stream fear now exuded on
his flesh. He had shivered then: now he not shivered but in all his frame
shook so that his knees scarcely could support him. Then it was merely
safety that he desired: now he realised fear. Then only safety occupied his
mind: now cowardice within him, and he knew it. Love, strangely, strongly
conceived in these months, called him on: fear, like a live thing on the rock
before him, held him, pressed him back. He thought of rippling water awash
upon that mouth, and looked along the narrow path before him, and licked
his arid lips again: he saw himself with that deep water, that icy water, that
thick water, welling, swelling, to his knees, to his waist, to his neck,
sucking him adrift—ah! and he looked back whence he had come and ran
his tongue again about his ugly, hanging mouth.

"I'm a coward," said Mr. Puddlebox aloud. "I can't come to you, boy," he
said. "I've got to go back, boy," he said. "I can't stand the water, boy. I've
always been terrified of deep water, boy. I'd come to you through fire, boy;
by God, I would. Not through water. I'm a coward. I can't help it, boy. Water
takes your breath. I can't do it, boy."

He waited as if he thought an answer would come. There was only an

intense stillness. There was only the very tiniest lapping of the water as it
welled and swelled: sometimes there was the faint rattle of a stone that the
sucking water sucked from the little ridge of pebbles against the cliff.
 Mr. Puddlebox looked down upon the water and spoke to it. The words
he spoke might have been employed fiercely, but he spoke them scarcely
above a whisper as though it were a confidence that he invited of the sea.
"Why don't you break and roar?" said Mr. Puddlebox to the sea, bending
down to it. "Why don't you break and roar in waves with foam? You'd be
more like fire then. There'd be something in you then. It's the dead look of
you. It's the thick look of you. Why don't you break and roar? It's the
swelling up from under of you. It's the sucking of you. Why don't you break
and roar?"

No answer to that. Only the aching stillness. Only the very tiniest, tiniest
lapping of the water as it welled and swelled: sometimes the tiny rattle of a
stone that from the ridge against the cliff the sucking water sucked.

In that silence Mr. Puddlebox continued to stare at the water. He stared at

it; and at its silence, and as he stared, and as silent, motionless, he continued
to stare, his face began to work as, in the presence of a sleeper, sudden
stealthy resolve might come to one that watched. Then he began to act as
though the water were in fact asleep. He looked all round, then he stepped
swiftly down to the little ridge. The pebbles gave beneath him and carried
his left foot into the water. He stood perfectly still, pressed against the cliff.
"Why don't you break and roar?" whispered Mr. Puddlebox. No answer. No
sound. He began to tread very cautiously towards the further pier, the palms
of his hands against the cliff, and his face anxiously towards the sea, and all
his action as though he moved in stealth and thought to give the sea the slip.
As he neared the barrier, so neared the cliff the sea. When but twenty yards
remained to be traversed the cliff began to thrust a buttress seaward, awash
along its base. "Water takes your breath," Mr. Puddlebox had said. A dozen
steps took him above his boots, and he began to catch at his breath as the
chill struck him. He opened his mouth with the intent to make these sobbing
inspirations less noisy than if drawn hissing through his teeth. He slid his
feet as if to lift and splash them would risk awakening the sleeping tide. He
was to his knees in it when he reached the rocks. Their surface was green in
slimy weed: that meant the tide would cover them. He got up, and on his
hands and knees upon the slime caught at his breath and peered beyond.

No beach was visible here: only water: perfectly still.

 It was a very short way to the next barrier, and of the barrier very short
what was to be seen. The buttress of the cliff pressed steadily out to what
was no more than a little table of rock, scarcely thicker above the surface
than the thickness of a table-top, then seemed to fall away. A trifle beyond
the table there upstood a detached pile of rock, rather like a pulpit and
standing about a pulpit's height above the water. That table—when it ran far
out along the shore—was where Mr. Puddlebox, looking back, had last seen
his loony stand. He remembered it, for he remembered the summit of the
pulpit rock that peered above it.

The idea to shout occurred to him. That low table seemed to mark a
corner. His loony might be beyond it. If he shouted— He did not dare to
shout. Here, more than before, the intensity of the silence possessed him.
He did not dare to break it. Here, with no beach visible, the water seemed
profoundly dead in slumber.

"Why don't you break and roar?" said Mr. Puddlebox. "Why don't you
—" he held his breath and crept forward. He lowered himself and caught his
breath. His feet crunched upon the shingle bed, the water stood above his
knees, and while the stones still moved where he had disturbed them he
stood perfectly still. When they had settled he began to move, sideways,
very slowly, his back against the cliff. Each sidelong step took him deeper;
at each he more sharply caught his breath. It seemed to him as though the
cliff were actually pressing him forward with huge hands. He pressed
against it with all his force as though to hold it back. It thrust him, thrust
him, thrust him. He was deep to his thighs. He was deep to his waist.
"Water takes your breath," Mr. Puddlebox had said. At each deepening step
more violently his breath seemed to be taken, more clutchingly had to be
recalled. He was above his waist. He stumbled and gave a cry and
recovered himself and began to go back; tried to control his dreadful
breathing; came on again; then again retreated. Now his breathing that had
been sobbing gasps became sheer sobs. He suddenly turned from his
sidelong progress, went backwards in two splashing strides whence he had
come—in three, in four, and then in a panic headlong rush, and as if he
were pursued clambered frantically out again upon the slimy rocks.
 As if he were pursued—and now, as if to sight the pursuit, looked
sobbing back upon the water he had churned. There was scarcely a sign of
his churning. Scarcely a mark of his track. Still as before the water lay
there. Still, and thick, and silent, and asleep, and seemed to mock his fears.

"Blast you!" cried Mr. Puddlebox, responsive to the silent mock. "Blast
you, why don't you break and roar?" He put a foot down to it and glared at
the water. "Why in hell don't you break and roar?" cried Mr. Puddlebox, and
flung himself in again, and splashed to the point at which he had turned and
fled, and drew a deep breath and went forward above his waist....

The cliff thrust him out and he was deeper; thrust again, and he was
above his waist. "Takes your breath"—he was catching at his breath in
immense spasms. The shore dropped beneath his feet and he was to his
armpits, the table of rock a long pace away. He was drawn from the cliff,
and he screamed in dreadful fear. He tried to go back and floundered
deeper. He was drowning, he knew. If he lost his footing—and he was
losing it—he would go down, and if he went down he never would rise
again. He called aloud on God and screamed aloud in wordless terror. The
tide swung him against the cliff and drew him screaming and clutching
along it. He stumbled and knew himself gone. His hands struck the table of
rock. He clutched, found his feet, sprang frantically, and drew himself upon
it. He lay there exhausted and moaning. When his abject mind was able to
give words to his moans, "O my Christ, don't let me drown," he said. "Not
after that, Christ, don't let me drown. O merciful Christ, not after that."

After a little he opened his eyes that had been shut in bewilderment of
blind terror and in preparation of death and that he had not courage or
thought to open. He opened his eyes. This is what he saw.

Beneath his chin, as he lay, the still, deep water. Close upon his right
hand the cliff that towered upwards to the night. A narrow channel away
from him stood the pulpit rock. The cliff ran sharply back from beside him,
then thrust again towards the pulpit; stopped short of it and then pressed
onwards out to sea. Its backward dip formed a tiny inlet over which,
masking it from the open sea, the pulpit rock stood sentinel. The back of the
inlet showed at its centre a small cave that had the appearance of a human
mouth, open. At low water this mouth would have stood a tall man's height
above the beach. A short ridge ran along its upper lip. In the dim light it
showed there blackly like a little clump of moustache. From its under lip,
forming a narrow slipway of beach up to it, there ran a rubble of stones as if
the mouth had emitted them or as if its tongue depended into the sea. The
corners of the mouth drooped, and here, as if they slobbered, the water
trickled in and out responsive to the heaving of the tide.

Mr. Wriford lay upon this slip. He lay face downwards. His arms from
his elbows were extended within the mouth of the cave. His boots were in
the water. His legs, as Mr. Puddlebox thought, lay oddly twisted.

CHAPTER IV

WATER THAT SWELLS AND SUCKS

Who is so vile a coward that one weaker than himself, in worse distress,
shall not arrest his cowardice? Who that has given love so lost in fear as not
to love anew, amain, when out of peril his love is called? Who so base then
not to lose in gladness what held his soul in dread?

First Mr. Puddlebox only stared. Water that takes your breath had taken
his. Water that takes your breath rose in a thin film over the rock where on
his face he lay, passed beneath his body, chilled him anew, and took his
breath again. He watched it ooze from under him and spread before him: lip
upwards where he faced it and ooze beneath his hands. Then gave his eyes
again towards the cave.

Who is so vile a coward? Mr. Puddlebox's teeth chattered with his body's
frozen chill: worse, worse, with terror of what he had escaped—God, when
that sucking water sucked!—fast, faster with that worse horror he besought
heaven "not after that" should overtake him. Who so vile, so base? Ah, then
that piteous thing that lay before his eyes! in shape so odd, so ugly—
broken? dead? Whom he had seen so wild, so eager? who child had been to
him and treated as a child? Who first and only in all these years of sin had
looked to him for aid, for counsel, strength? Who must have fought this
filthy, cruel, silent, sucking water, and fighting it have called him, wanted
him? Ah!

Who is so vile? "Loony," Mr. Puddlebox whispered. "Loony! Hey, boy!"

He only whispered. He did not dare a cry that should demand an answer
—and demanding, no answer bring. "Hey, boy! Loony!" He tried to raise
his voice. He dared not raise it. Anew and thicker now the water filmed the
rock about him. Here was death: well, there was death—that piteous
thing....

Then change! Then out of death life! Then gladness out of dread! Then
joy's tumult as one beside a form beneath a sheet should see the dead loved
move.

About the slipway, as he watched, he saw the swelling water, as if with

sudden impulse, swell over Mr. Wriford's boots, run to his knees, and in
response the prone figure move—the shoulders raise as if to drag the body:
raise very feebly and very feebly drop as if the oddly twisted legs were
chained.

Feebly—ah, but in sign of life! Revulsion from fear to gladness brought

Mr. Puddlebox scrambling to his feet and upright upon them. To a loud cry
there would be answer then! Loudly he challenged it. "Loony!" cried Mr.
Puddlebox, his voice athrill. "Hey, boy, what's wrong? I'm coming to you,
boy!"

It was a groan that answered him.

"Are you hurt, boy?"

There answered him: "Oh, for God's sake—oh, for God's sake!"

"Why, that's my loony!" cried Mr. Puddlebox in a very loud voice. "Hold
on, boy! I'm coming to you!"
 Excitedly, in excited gladness his terrors bound up, quickly as he could,
catching at his breath as his fears caught him, stifling them in jolly shouts
of: "Hold on for me, boy! Why, here I come, boy, this very minute!" he
started to make his way, excitedly pursued it.

"Hold on for me, boy!" The cliff along the wall of the inlet against which
he stood shelved downwards into the dark, still sea. "Here I come, boy!" He
went on his face on the table rock and with his legs felt in the water beneath
him and behind him. "Hold on for me, boy!" His feet found a ridge, and he
lowered himself to it and began to feel his way along it, his hands against
the cliff, above his waist the still, dark sea. "Here I come, boy! This very
minute!"

So he cried: so he came—deeper, and now his perils rose to fight what

brought him on. Deeper—the water took his breath. "Here I come, boy!"
Stumbled—thought himself gone, knew as it were an icy hand thrust in his
vitals from the depths, clutching his very heart. "I'm to you now, boy. Here
—" Terror burst in a cry to his mouth. He changed it to "Whoa!" He was
brought by the ridge on which he walked to a point opposite what of the
slipway before the cave stood dry. The ridge ended abruptly. He had almost
gone beyond it, almost slipped and gone, almost screamed.

"Whoa!" said Mr. Puddlebox. "Hold on for me, boy!" He took his hands
from the cliff and faced about where Mr. Wriford lay. Shaken, he felt his
way lower. God, again! Again his foothold terminated! Abruptly he could
feel his way no more. Like a hand, like a hand at his throat, the water
caught his breath. "Hold on for me, boy!" His voice was thick. "Hold on for
me, boy!" Clear again, but he stood, stood, and where he stood the water
swayed him. Here the cliff base seemed to drop. Here the depths waited
him. Facing his feet he knew must be the wall of the slipway. No more than
a long stride—ah, no more! If he launched himself and threw himself, his
foot must strike it, his arms come upon its surface where that figure lay.
Only a long stride. What, when he made it, if no foothold offered? What if
he missed, clutched, fell? He looked across the narrow space. Only that
spring's distance that figure lay, its face turned from him. He listened. The
silence ached, tingled all about him. Suddenly it gave him from the figure
the sound of breathing that came and went in moans.
 Who is so vile a coward? Swiftly Mr. Puddlebox crouched, nerved,
braced himself to spring. Ah, swifter thrust his mind, and bright as flame
and fierce as flame, as a flame shouting, flamed flaming vision before his
starting eyes. He saw himself leap. He saw himself clutch, falling—God, he
could feel his finger-nails rasp and split!—fallen, gone: rising to gulp and
scream, sinking to suffocate and gulp and writhe and rise and scream and
gulp and sink and go. Like flame, like flame, the vision leapt—upstreaming
from the water, shouting in his ears. Thrice he crouched to spring; thrice
like flame the vision thundered: thrice passed as flame that bursts before the
wind: thrice left him to the stillness, the sucking water, the sound of
moaning breath. A fourth time, a last time: ah, now was gone the very will
to bring himself to crouch!

He stood a moment, vacant, only trembling. His senses fluttered back to

him, and gone, so they informed him, something that before their flight had
occupied them. What? In his shaken state he was again a vacant space
searching for it before he realised. Then he knew. There was no sound of
breathing....

Trembling he listened for it, staring at the figure. Still; there was no
sound. Suddenly he heard it. Dreadfully it came. Feebly, a moaning
inspiration: stillness again—then a very little sigh, very gentle, very tiny,
and the prone figure quivered, relaxed.

Dead? Again, as on the table rock, afraid to call aloud, "Loony!" Mr.
Puddlebox whispered. "Hey, boy!"

No answer. Swelling about him came the creeping water, swayed him,
swelled and swayed again: high to his chest, higher now and moving him—
moving, sucking, drawing. Here was death: ah, well, wait a moment, for
there was death—that piteous thing face downwards there. He spoke softly:
"Hey, boy, are you gone?" The water rocked him. He cried brokenly, loudly:
"Loony! Are you gone, boy?"

Again, again, life out of death, joy's tumult out of fear!

He saw Mr. Wriford draw down his arms, press on his elbows, raise, then
turn towards him his face, most dreadfully grey, most dreadfully drawn in
pain.

Who so vile, so base?

Swift, swift revulsion to gladness out of dread. "Why, that's my loony!"

cried Mr. Puddlebox in a very loud voice.

Mr. Wriford said: "Have you come?"

"Why, here I am, boy!" He steadied his feet.

Very feebly, scarcely to be heard: "I don't see you."

"Why, there's no more than my nob to be seen, boy! I'm here to my nob
in the water." His feet were firm. He braced himself. "I'm to you, boy, and
I'm in the most plaguy place as I challenge any man ever to have been." He
crouched. "I've to jump, boy, and how to the devil—"

He launched himself. His foot struck the slipway bank—no hold!

Smooth rock, and his foot glanced down it! He had thought to spring
upward from what purchase his foot might find. It found none. Clutching as
he fell, he obtained no more than his arms upon the shingle of the slipway,
his chin upon it, his elbows thrusting deep, his fingers clutching in the
yielding stones.

"Loony!" Mr. Puddlebox cried. "Loony!"

He slipped further. He suddenly screamed: "Loony, I'm going! Christ,

I'm going!"

His face, in line with Mr. Wriford's, two arm's-lengths from it, was
dreadfully distorted, his lips wide, his teeth grinding. He choked between
them: "Can you help me, boy?"

Mr. Wriford was trying to help him. Mr. Wriford was working towards
him on his elbows, his face twisted in agony. As he came, "My legs are
broken," he said. "I'll reach you. I'll reach you."
 Eye to eye and dreadfully eyed they stared one upon the other. A foot's
breadth between them now, and now their fingers almost touching.

"I'm done, boy! Christ, I'm done!" But with the very cry, and with his
hand so near to Mr. Wriford's slipped again beyond it, Mr. Puddlebox had
sudden change of voice, sudden gleam in the eyes that had stood out in
horror. "Curse me, I'm not!" cried Mr. Puddlebox. "Curse me, I've bested it.
I've found a hole for my foot. Ease up, boy. I'm to you. By God, I'm to you
after all!"

Groan that was prayer of thanks came from Mr. Wriford. Fainting, his
head dropped forward on his hands. There was tremendous commotion in
the water as Mr. Puddlebox sprang up it from his foothold, thrashing it with
his legs as, chest upon the shingle, he struggled tremendously. Then he
drew himself out and on his knees, dripping, and bent over Mr. Wriford.

"I'm to you now, boy! You're all right now. Boy, you're all right now."

The swelling water swelled with new impulse up the shingle, washed
him where he knelt, ran beneath Mr. Wriford's face, and trickled in the
stones beyond it.

Mr. Puddlebox looked back upon it over his shoulder. He could not see
the table rock where he had lain. Only the pulpit rock upstood, and deep
and black the channel on either hand between it and the walls of their inlet.
He looked within the cave mouth before him and could see its inner face. It
was no more than a shallow hollowing by the sea. He looked upwards and
saw the cliff towering into the night, overhanging as it mounted.

He passed his tongue about his lips.

CHAPTER V
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