The narrative construction of dyslexic identities in adults Kimberley Horton Cardiff University Submitted for the award of PhD, April 2015 i Abstract Identity and self are complex and fragmented concepts. There are various theories, but narrative is a useful framework for understanding and investigating them. Narrative theory and social constructionism, which have similar ontological foundations but differ somewhat in other ways, are combined in this thesis to investigate how adults with dyslexia construct their identities. A new concept, ‘storyworld’, is presented and used to demonstrate how the narrative construction of lived time shapes identity construction. The stories adults tell about their lived experience of disability allow a glimpse into the impact of disability on identity and selfhood. Dyslexia, as a specific disability characterised by difficulties with literacy, has the potential to be a moral issue with which sufferers have to contend in everyday life. This study presents findings from narrative life interviews with 14 adults who identify as dyslexic. First, the adults’ discursive constructions of dyslexia are presented. Decisions about disclosure and concealment are important and have impacts on lived-lives and future plans. They bring up identity issues such as change and difference. Change and difference vis-à-vis a label of dyslexia, perceptions of self, thoughts about people’s perceptions and new ways one can deal with difficulties related to dyslexia, were expressed through the participants’ narratives. The life narratives of two women are then presented as case studies, with specific reference to disclosure and their journeys from initial suspicions of dyslexia to current difficulties and identity struggles. The concept of ‘storyworld’ is used to shape the analyses, focusing on how the lived life is framed within the told story and how the participants narratively construct their lives. Finally, the narrative structures, plots and timelines of the participants’ stories are analysed. In terms of identity, the temporal complexity of the stories, exposed through a storyworld analysis, indicates the self- significance of the lived-events that are told. i DECLARATION This work has not been submitted in substance for any other degree or award at this or any other university or place of learning, nor is being submitted concurrently in candidature for any degree or other award. Signed ………………………………………… (candidate) Date …06/08/2015… STATEMENT 1 This thesis is being submitted in partial fulfillment of the requirements for the degree of PhD……(insert MCh, MD, MPhil, PhD etc, as appropriate) Signed ………………………………………… (candidate) Date …06/08/2015… STATEMENT 2 This thesis is the result of my own independent work/investigation, except where otherwise stated. Other sources are acknowledged by explicit references. The views expressed are my own. Signed ………………………………………… (candidate) Date …06/08/2015… STATEMENT 3 I hereby give consent for my thesis, if accepted, to be available online in the University’s Open Access repository and for inter-library loan, and for the title and summary to be made available to outside organisations Signed ………………………………………… (candidate) Date …06/08/2015… ii Acknowledgements It takes a lot of commitment, patience and hard work to complete a doctoral thesis. It also takes a lot of support and understanding from those closest to you. First, I would to thank my supervisors for their encouragement, excellent feedback and assistance. They have supported me fully and the professional relationship we have built has been a huge part of my studies and the completion of this thesis. I would also like to thank my parents for their support, both emotionally and financially, throughout my education. I have made some good friends during the course of my doctoral studies. I appreciate the times we have spent together in support, joint frustration and a lot of food! I'm sure this will continue for many years to come. I also appreciate the support of all my other friends in Cardiff and beyond. I would also like to express my appreciation for the 14 people who willingly gave up their time to participate in this research. I hope they enjoyed the experience. A thesis is not a thesis without the corrections of spelling mistakes and grammatical errors which inevitably infiltrate such a big piece of work. I would therefore like to thank Valerie Preece, who has been kind enough to proof read this report and offer advice to improve it. However, I must point out that all remaining errors are mine and mine alone. Finally, I would like to thank my husband. His understanding and unwavering support has been fundamental to the completion of this report. iii Table of Contents ABSTRACT I ACKNOWLEDGEMENTS III TABLES AND FIGURES VII CHAPTER 1: INTRODUCTION 1 1.1 INTRODUCTION 1 1.2 IDENTITY, NARRATIVE AND DISABILITY 2 1.3 PROPOSAL 3 1.4 CONCLUSION 5 CHAPTER 2: NARRATIVE, IDENTITY AND TIME 6 2.1 INTRODUCTION 6 2.2 SOCIAL CONSTRUCTIONISM 7 2.3 NARRATIVE 7 2.3.1 NARRATIVE IDENTITY 7 2.3.2 PLOT 13 2.4 TIME, NARRATIVE AND STORYWORLD 15 2.5 CONCLUSION 20 CHAPTER 3: DISABILITY AND IDENTITY 21 3.1: INTRODUCTION 21 3.2: DISABILITY 21 3.3 HIDDEN OR VISIBLE DISABILITY 23 3.4 NARRATIVE STUDIES 27 3.5 DISABILITY AND ILLNESS IN NARRATIVE STUDIES 31 3.6 CONCLUSION 37 CHAPTER 4: DYSLEXIA AS A DISABILITY 38 4.1 INTRODUCTION 38 4.2 LITERACY IN SOCIETY 38 4.3 WHAT IS DYSLEXIA? 41 4.4 IS DYSLEXIA A DISABILITY? 49 4.5 CONCLUSION 56 4.6 RESEARCH FOCUS 58 CHAPTER 5: METHODOLOGY 59 5.1 INTRODUCTION 59 5.2: DATA COLLECTION 59 5.2.1 RATIONALE 59 5.2.2 PILOT INTERVIEWS 70 5.2.3 PROCEDURE 72 5.3 DATA ANALYSIS 82 iv 5.3.1 RATIONALE AND TECHNIQUES 82 5.4 REFLEXIVITY 90 5.5 CONCLUSION 94 CHAPTER 6: ‘I’M STILL ADJUSTING TO THE WORD, THE DISABILITY, THE DYSLEXIA’: CONSTRUCTIONS OF DYSLEXIA 96 6.1 INTRODUCTION TO THE ANALYSIS 96 6.2 INTRODUCTION 97 6.3 DIFFICULTIES 97 6.4 BATTLE 106 6.5 SEN 108 6.6 MEDICAL OR DISABILITY ISSUE 109 6.7 SUPPORT 114 6.8 REASON 124 6.9 EXCUSE 127 6.10 DISCLOSURE / CONCEALMENT TENSION 129 6.11 CONCLUSION 132 CHAPTER 7: ROSE AND ELLIE: DYSLEXIA AND THE LIFE NARRATIVE 135 7.1 INTRODUCTION 135 7.2 EMPLOTMENT OF DIFFERENCE 137 7.2.1 DIFFERENCE 137 7.2.2 ROSE: CHILDHOOD AND DIFFERENCE 137 7.2.2 ROSE: DIFFERENT NOW 145 7.2.3 ELLIE: CHILDHOOD AND DIFFERENCE 148 7.3 CHANGE IN STORIED LIVES 154 7.3.1 ROSE: CHANGE AND DYSLEXIA 154 7.3.2 ELLIE: RECENT CHANGE – DYSLEXIA IS A PROBLEM 161 7.4 PLOT AND IDENTITY 164 7.5 CONCLUSION 166 CHAPTER 8: NARRATIVE IDENTITY IN CHANGING LIVES 170 8.1 INTRODUCTION 170 8.2 RECENT OR CURRENT CHANGE 175 8.3 PAST CHANGE AND PRESENT DIFFICULTIES 193 8.4 PAST CHANGE AND NON-SELF-SIGNIFICANCE IN PRESENT 199 8.5 CONCLUSION 206 CHAPTER 9: DISCUSSION 209 9.1 INTRODUCTION 209 9.2 DYSLEXIA 210 9.2.1 DYSLEXIA AS A MEDICAL CONCEPT 210 9.2.2 LABELLING AND DISABILITY 211 9.2.3 CONSTRUCTIONS OF DYSLEXIA AND IDENTITY 211 9.2.4 MORALITY 212 9.3 DYSLEXIA IN THE LIFE STORY 214 v 9.3.1 NARRATIVE OF DYSLEXIA, DISABILITY, ILLNESS 215 9.4 STORYWORLD 216 9.5 CONCLUSION 218 9.5.1 POLICY AND PRACTICE IMPLICATIONS 219 9.5.2 FUTURE RESEARCH 220 REFERENCES 221 APPENDICES 235 vi Tables and Figures Figure Title Page Table 1 Demographic data of the participants 74 Figure 1 Lucius-Hoene and Deppermann’s (2000) framework for 88 positioning analysis in narrative research Figure 2 Plot of Rose’s story 136 Figure 3 Plot of Ellie’s story 136 Figure 4 Structure of part of Rose’s narrative 159 Figure 5 Temporal structure of Simon’s narrative 179 Figure 6 Temporal structure of Natasha’s narrative 183 Figure 7 Temporal structure of Claire’s narrative 188 Figure 8 Temporal structure of Madison’s narrative 192 Figure 9 Temporal structure of Peter’s narrative 197 Figure 10 Temporal structure of Claire’s narrative 198 Figure 11 Temporal structure of Hilary’s narrative 202 Figure 12 Temporal structure of Fred’s narrative 204 Figure 13 Temporal structure of Xander’s narrative 206 vii Chapter 1: Introduction 1.1 Introduction At a primary school somewhere in the English Midlands, Katie, a seven-year-old year 3 pupil, is asked by Mrs Smith, her teacher, to sit next to Tom and help him with his work. Tom has recently been identified as having a specific learning difficulty. The school cannot provide a dedicated classroom assistant to help Tom for more than one day a week. The teacher is confident that Katie will be able to help Tom and continue with her own work unhindered. Katie becomes friends with Tom and his friends. Both Tom and Katie’s lives have been influenced by Tom’s identification of dyslexia. This was the experience I had when I was a child, which led to my interest in dyslexia and how it has an impact on lives and identities. I have never had the kinds of difficulties that Tom had and I have never been identified with dyslexia. However, during the final months of studying for this thesis, I experienced an important change in my life. I was having seizures; some partial, some severe. I felt like I had become someone else. I had to take some sick leave, and plans at work and home were postponed or changed because of me. After many trips to casualty, and to see doctors and consultants, I was eventually diagnosed with epilepsy.