Identity Construction and Illness Narratives in Persons with Disabilities

Chalotte Glintborg, Manuel L. de la Mata, Chalotte Glintborg, Manuel L. de la Mata

• Publisher: Routledge
• Year: 2020
• ISBN:
  9781000171624
• Edition: 1
• Topic: Social Sciences
• Subtopic: Disabilities in Sociology
• Index: Social Sciences

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 subjugates humanity in such a way that everything a person does can be interpreted as linked to their disability.

Drawing on narrative approaches to identity in psychology and social sciences, 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 studies, sociology, medical humanities, disability research methods, narrative theory, and rehabilitation studies.

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 narrative refers broadly to a variety of traditions and scientific disciplines. Most often the term “narrative” is synonymous with “story”. However, there are different 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 psychology and culture (Plummer, 2001; Bruner, 1991; Riessman, 2008). In social sciences and psychology, the metaphoric approach to narrative, and the understanding 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 psychology 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 psychology and its predominant (if not exclusive) interest in paradigmatic thinking (Bruner, 1986). Instead, he became interested in narrative thinking, since paradigmatic (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 motivations, 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, 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 narrative”), 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 methodological) 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”. McAdams 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 functions 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 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 representations 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 situations 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 cognitive 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 encompass 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).

Narratives are one of the most important ways to make sense of our experiences. 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 conceptualize 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 Dementia (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 book is to utilize storytelling as a way of communicating the participants’ realities 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 “painting” of their stories.

References

Bamberg, M. (2004). Talk, small stories, and adolescent identities. Human Development, 47, 366–369.

Bamberg, M. (2011). Who am I: Narration and its contribution to identity. Theory & Psychology, 21, 3–24. doi:10.1177/0959354309355852.

Bamberg, M. & Georgakopoulou, A. (2008). Small stories as a new perspective in narrative and identity analysis. Text & Talk, 3, 377–396.

Bosacki, S., Marini, Z., & Dane, A. (2006). Voices from the classroom: Pictorial and narrative representations of children’s bullying experiences. Journal of Moral Education, 35(2), 231–245.

Bruner, J. (1985). Child’s talk: Learning to use language. New York: W.W. Norton & Co.

Bruner, J. (1986). Actual minds, possible worlds. Cambridge, MA: Harvard University Press.

Bruner, J. (1991). The narrative construction of reality. Critical Inquiry, 18, 1–21.

Bruner, J.S. (2003a). Making stories: Life, literature, law. Cambridge, MA: Harvard University Press.

Bruner, J.S. (2003b). Self-making narratives. In R. Fivush & C.A. Haden (Eds.), Autobiographical memory and the construction of a narrative self: Developmental and cultural perspectives (pp. 209–225). Mahwah: Lawrence Erlbaum Associates.

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Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Table of Contents
• List of contributors
• 1. Narrative inquiry in disability research
• 2. Narrative identity is social context
• 3. Stories of self when living with aphasia in a digitalized society
• 4. “We got a second chance”: Couple narratives after being affected by an acquired brain injury
• 5. Narrative identity and dementia: The problem of living with fewer available resources
• 6. Recovery stories of people diagnosed with severe mental illness: Katabatic and anabatic narratives
• 7. (Re)constructing identity after aphasia: A preliminary study about how people with aphasia describe their selves
• 8. Narratives and identity construction of children with developmental speech and language disorders
• 9. Hope in offenders’ narratives of Attention Deficit Hyperactivity Disorder (ADHD)
• 10. Conclusion and future perspectives
• Index