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Final Thesis August 2019 Amended New The Cockroach in the Cupboard, the Technical Amputee and Me: An Auto-ethnographic Narrative Inquiry of Adolescence and Disability Identity; Storied by Physically Disabled Women. By, Emily Allsopp Research thesis submitted in part requirement for the Doctor of Educational and Child Psychology School of Education May 2019 Abstract Literature: Discourse around disability generally, is often dominated by medicalised and ‘tragic’ description (Shakespeare 1999; Goodley 2017; Campbell, 2009) and the research often carried out on disabled participants by able bodied researchers (Sheldon, 2017). This thesis critiques this view, and aligns with the Affirmative Model of disability described by Swain and French (2000). Research indicates that women with disabilities face a ‘double disadvantage’ in multiple areas (Rousso, 2003) through the intersection of the two identifiers (Wheaton and Crimmins, 2016). Particularly, experiencing adolescence as a female with a disability may impact identity development (King, Shultz, Steel et al, 1993; Magill-Evans and Restall, 1991) however the literature is fairly sparse. Adolescence is the key point in which the development of our identity occurs (Erikson, 1959-1963) this time can prove challenging for all young women (Bacchini and Magliulo, 2003; Ostrov, Offer and Howard,1989; Simmons and Blith, 1987) and additionally young women with disabilities (Hanková, and Vávrová, 2016; Doubt & McColl (2003), this can impede on school attendance, academic, emotional and psychosocial development. Based on my own experiences as a woman with a physical disability, I considered it important to hear the voices of women with disabilities to appreciate their subjective experience of adolescence and identity, their response to a shared experience with a disabled researcher and their views on their identity. Methodology: With a critical social constructionist ontology, this interpretivist study applied a narrative auto-ethnographic approach. From a critical disability studies and feminist theoretical perspective it hears the narratives of adolescence by women with physical disabilities. Participants included two (postgraduate) women who self-identified as physically disabled. Interactional narrative interviews were conducted, with the flexibility for the participant to engage with the researcher reciprocally, to ensure a shared experience. Data Analysis: Stories were analysed using the Listening Guide (Gilligan, 2015) to reflectively explore their experiences and the meaning attributed to these in terms of their identity. Each narrative was analysed individually and various themes, contrapuntal voices, imagery and an ‘I poem’ were developed from each. An Auto ethnographic approach is used to capture my responses to the research experience. Discussion: Connections to the relevant literature are made and I concluded that the analysis of these personal narratives could provide helpful guidance to Educational Psychologists working with young people with physical disabilities. That is, in terms of their identity and well-being and influence systemic work with schools or communities, in terms of the way inclusive practice is encouraged through consultation and training. My personal reflections, on the research process which describe the influence of this on my own disability identity and practice conclude the thesis. 2 Acknowledgements I would like thank my allies for their on-going support, commitment, guidance and patience: My family, my partner, and my close friends and especially my proof readers. My supervisor and all of my Educational Psychology Service colleagues; my university peers and my Research Supervisor, for their much appreciated support throughout my research and training. I would like to give a special acknowledgement to my participants for the co-construction of this research and for the privilege of being able to share their stories. 3 Contents Title Page Abstract................................................................................................................................................2 Acknowledgements..............................................................................................................................3 Chapter 1: Introduction and Literature Review 1.1 Introduction....................................................................................................................................6 1.2 Definition of terms..........................................................................................................................6 1.3 Narrative beginnings......................................................................................................................8 1.4 Literature review..........................................................................................................................10 1.4.1 Overview...................................................................................................................................10 1.4.2 Dominant Disability Narratives..................................................................................................12 1.4.3 Disabled women: intersectionality............................................................................................13 1.4.4 Self-esteem and Mental Health in Women/Disabled Women...................................................14 1.4.5 Identity Development................................................................................................................17 1.4.6 Disability Identity.......................................................................................................................19 1.4.7 Self-esteem and Mental Health in Impairment..........................................................................22 1.4.8 Developing a Positive Disability Identity...................................................................................24 1.4.9 Shared Experience...................................................................................................................26 1.4.10 Coming Out as Disabled: Comparisons with the LGBTQ+ Community..................................27 1.4.11 Chapter Summary.................................................................................................................28 Chapter 2: Methodology 2.1 Introduction.................................................................................................................................30 2.2 Positionality: Ontology and epistemology...................................................................................31 2.2.1 Ontology...................................................................................................................................31 2.2.2 Social constructionism and Disability.......................................................................................32 2.2.3 Epistemology............................................................................................................................33 2.2.4 Emic/Etic Position.....................................................................................................................35 2.2.5 Feminist Epistemology..............................................................................................................36 2.3 Theoretical Perspectives.............................................................................................................38 2.3.1 Critical Disability Studies..........................................................................................................38 2.3.2 Feminist Theory........................................................................................................................38 2.3.3 Narrative Methodologies...........................................................................................................40 2.3.4 Auto-ethnography.....................................................................................................................42 2.3.5 Selecting and Methodology......................................................................................................43 2.3.6 Reflexivity.................................................................................................................................44 Chapter 3: Procedure 3.1 Ethical Considerations and recruitment.......................................................................................45 3.2 Managing the Risk to Participants...............................................................................................46 3.3 Confidentiality..............................................................................................................................46 3.4 Pilot Study and Sample...............................................................................................................47 3.5 The Narrative Interview................................................................................................................48 3.6 Quality in Research.....................................................................................................................51 3.6.1 Dependability and Reliability....................................................................................................51 3.6.2 Trustworthiness and Rigour.....................................................................................................52 3.6.3 Transferability and generalisability (External Validity)..............................................................52
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