‘In your own head everyone is staring’: the disability related identity experiences of young people with hemiplegic cerebral palsy

References

• Amog, N. 2018. “‘Everyone Is Normal, and Everyone Has a Disability’: Narratives of University Students with Visual Impairment.” Social Inclusion 6 (4): 218–229.
   Web of Science ®Google Scholar
• Arnett, J. J. 2003. “Conceptions of the Transition to Adulthood among Emerging Adults in American Ethnic Groups.” New Directions for Child and Adolescent Development 100: 63–76.
   PubMedGoogle Scholar
• Arnett, J. J. 2004. Emerging Adulthood. The Winding Road from the Late Teens Through the Twenties. New York: Oxford University Press.
   Google Scholar
• Bamberg, M. 2011. “Narrative Practice and Identity Navigation.” In Varieties of Narrative Analysis, edited by J. A. Holstein and J. E. Gumbrium, 95–124. California: Sage Publications.
   Google Scholar
• Barnes, C. 2012. “Understanding the Social Model of Disability: Past, Present and Future.” In The Routledge Handbook of Disability, edited by N. Watson, A. Roulstone, and C. Thomas. London: Routledge.
   Google Scholar
• Baxter, P., et al. 2007. “The Definition and Classification of Cerebral Palsy.” Developmental Medicine and Child Neurology 49: 1–44.
   PubMedGoogle Scholar
• Beecham, J., Teresa O’Neill, and Robert Goodman. 2001. “Supporting Young Adults with Hemiplegia: Services and Costs.” Health and Social Care in the Community 9 (1): 51–59.
   PubMed Web of Science ®Google Scholar
• Campbell, F. K. 2019. “Precision Ableism: A Studies in Ableism Approach to Developing Histories of Disability and Abledment.” Rethinking History 23 (2): 138–156.
   Web of Science ®Google Scholar
• Cardillo, L. W. 2010. “Empowering Narratives: Making Sense of the Experience of Growing up with Chronic Illness or Disability.” Western Journal of Communication 74 (5): 525–546.
   Google Scholar
• Chase, S. E. 2011. “Narrative Inquiry. Still a Field in the Making.” In The Sage Handbook of Qualitative Research, edited by N. K. Denzin and Y. S. Lincoln. California: Sage Publications, Inc.
   Google Scholar
• Connors, C., and K. Stalker. 2007. “Children's Experiences of Disability: Pointers to a Social Model of Childhood Disability.” Disability & Society 22 (1): 19–33.
   Web of Science ®Google Scholar
• Crain, W. 2011. Theories of Development. New Jersey: Pearson Education Limited.
   Google Scholar
• Davis, L. J. 2013a. “The end of Identity Politics: On Disability as an Unstable Category.” In The Disability Studies Reader, edited by L. J. Davis. New York: Rutledge.
   Google Scholar
• Davis, L. J. 2013b. “Introduction: Normality, Power and Culture.” In The Disability Studies Reader, edited by L. J. Davis. New York: Rutledge.
   Google Scholar
• Donkervoort, M., Marij Roebroeck, Diana Wiegerink, Helene van der Heijden-Maessen, and T. Stam Henk. 2007. “Determinants of Functioning of Adolescents and Young Adults with Cerebral Palsy.” Disability and Rehabilitation 29 (6): 453–463.
   PubMed Web of Science ®Google Scholar
• Dunn, D. S., and S. Burcaw. 2013. “Disability Identity: Exploring Narrative Accounts of Disability.” Rehabilitation Psychology 58 (2): 148–157.
   PubMed Web of Science ®Google Scholar
• East, L. J., and T. R. Orchard. 2014. “‘Why can't I?’: An Exploration of Sexuality and Identity among Canadian Youth Living with Physical Disabilities.” Journal of Youth Studies 17 (5): 559–576.
   Web of Science ®Google Scholar
• Erickson, E. H. 1968. Identity: Youth and Crisis. New York: Norton.
   Google Scholar
• Freeman, M., et al. 2018. “‘If I had been Given that Information Back then’: An Interpretive Description Exploring the Information Needs of Adults with Cerebral Palsy Looking Back on their Transition to Adulthood.” Child: Care, Health and Development 44: 689–696.
   PubMed Web of Science ®Google Scholar
• Galambos, N. L., et al. 2005. “Chronological and Subjective age in Emerging Adulthood: The Crossover Effect.” Journal of Adolescent Research 20 (5): 538–556.
   Web of Science ®Google Scholar
• García Iriarte, E., et al. 2016. “Models of Disability.” In Disability and Human Rights: Global Perspectives, edited by E. García Iriarte, R. McConkey, and R. Gilligan. London: Palgrave.
   Google Scholar
• Garland-Thomson, R. 2005. “Feminist Disability Studies.” Signs: Journal of Women in Culture and Society 30 (2): 1557–1587.
   Web of Science ®Google Scholar
• Gibson, B. E., and B. Mistry. 2014. “Becoming Men: Gender, Disability, and Transitioning to Adulthood.” Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 18 (1): 95–114.
   Web of Science ®Google Scholar
• Giddens, A. 1991. Modernity and Self Identity. Cambridge: Polity.
   Google Scholar
• Gill, C. J. 1997. “Four Types of Integration in Disability Identity Development.” Journal of Vocational Rehabilitation 9: 39–46.
   Google Scholar
• Harpur, P. 2012. “From Disability to Ability: Changing the Phrasing of the Debate.” Disability and Society 27 (3): 325–337.
   Web of Science ®Google Scholar
• Heller, T., and S. P. Harris. 2012. Disability Through the Life Course. California: Sage Publications.
   Google Scholar
• Hutchinson, K., et al. 2018. “Identity, Impairment and Disablement: Exploring the Social Processes Impacting Identity Change in Adults Living with Acquired Neurological Impairments.” Disability & Society 33 (2): 175–196.
   Web of Science ®Google Scholar
• Josselson, R., et al. 2011. “Narrative Research. Constructing, Deconstructing and Reconstructing Story.” In Five Ways of Doing Qualitative Analysis, edited by F. J. Wertz, C. Charmaz, and L. M. McMullen. New York, NY: The Guilford Press.
   Google Scholar
• Kelly, B. 2013. Don't box me in: Disability, Identity and Transitions to Young Adult Life. Northern Ireland: Barnardo's NI and Queens University Belfast.
   Google Scholar
• Lingson, S. 2008. “Invisible Impairments: Dilemmas of Concealment and Disclosure.” Scandinavian Journal of Disability Research 10 (1): 2–16.
   Google Scholar
• Link, B. J., and J. C. Phelan. 2001. “Conceptualizing Stigma.” Annual Review of Sociology 27: 363–385.
   Web of Science ®Google Scholar
• Lundberg, N. R., et al. 2011. “Identity Negotiating: Redefining Stigmatized Identities Through Adaptive Sports and Recreation Participation among Individuals with a Disability.” Journal of Leisure Research 43 (2): 205–225.
   Web of Science ®Google Scholar
• MacDonald, R., et al. 2019. “The Future of Youth Research and the Journal of Youth Studies: Editorial Statement, January 2019.” Journal of Youth Studies 22 (1): 1–6.
   Web of Science ®Google Scholar
• Marn, L. M., and L. C. Koch. 1999. “The Major Tasks of Adolescence: Implications for Transition Planning with Youth with Cerebral Palsy.” Work 13 (1): 51–58.
   PubMedGoogle Scholar
• McCance, T. V., et al. 2001. “Exploring Caring Using Narrative Methodology: An Analysis of the Approach.” Journal of Advanced Nursing 33 (3): 350–356.
   PubMed Web of Science ®Google Scholar
• McLaughlin, J., and E. Coleman-Fountain. 2014. “The Unfinished Body: The Medical and Social Reshaping of Disabled Young Bodies.” Social Science and Medicine 120: 76–84.
   PubMed Web of Science ®Google Scholar
• Morris, J. 1991. Pride Against Prejudice: Transforming Attitudes to Disability. London: The Women's Press.
   Google Scholar
• Mullins, L., and M. Preyde. 2013. “The Lived Experience of Students with an Invisible Disability at a Canadian University.” Disability and Society 28 (2): 147–160.
   Web of Science ®Google Scholar
• Nario-Redmond, M. R., Jeffrey G. Noel, and Emily Fern. 2013. “Redefining Disability, re-Imagining the Self: Disability Identification Predicts Self-Esteem and Strategic Responses to Stigma.” Self and Identity 12 (5): 468–488.
   Web of Science ®Google Scholar
• National Disability Authority (NDA). 2017. A National Study of Public Attitudes to Disability in Ireland. Disability Research Series. Dublin.
   Google Scholar
• Office of Disability Studies. 2011. Public Perceptions of Disabled People: Evidence from the British Social Attitudes Survey 2009. UK: HM Government.
   Google Scholar
• Olin, E., and B. R. Jansson. 2009. “On the Outskirts of Normality: Young Adults with Disabilities, their Belonging and strategies.” International Journal of Qualitative Studies on Health and Wellbeing 4: 256–266.
   Web of Science ®Google Scholar
• Oliver, M. 2009. Understanding Disability. From Theory to Practice. London: Palgrave Macmillan.
   Google Scholar
• Oliver, M. 2013. “The Social Model of Disability: Thirty Years on.” Disability and Society 28 (7): 1024–1026.
   Web of Science ®Google Scholar
• Pohjola, H. 2018. “Acquired Disability in Young Women: A Challenge for Identity?” Journal of Youth Studies, 1–13.
   Web of Science ®Google Scholar
• Polkinghorne, D. E. 1995. “Narrative Configuration in Qualitative Analysis.” In Life History and Narrative, edited by J. A. Hatch and R. Wisniewski. London: The Falmer Press.
   Google Scholar
• Priestley, M. 2003. Concepts in Disability. A Life Course Approach. Oxford: Policy Press.
   Google Scholar
• QSR International. 2012. NVivo 10 Qualitative Data Analysis Software. QSR International Pty Ltd. 10.
   Google Scholar
• Reeve, D. 2014. “Psycho-emotional Disablism and Internalised Oppression.” In Disabling Barriers - Enabling Environments, edited by S. Swain, C. French, C. Barnes, and C. Thomas, 92–97. London: Sage Publications Ltd.
   Google Scholar
• Rhodes, P., Andrew Nocon, Neil Small, and John Wright. 2008. “Disability and Identity: The Challenge of Epilepsy.” Disability & Society 23 (4): 385–395.
   Web of Science ®Google Scholar
• Riessman, C. 2008. Narrative methods for the human sciences. Sage Publications, Inc.
   Google Scholar
• Samuels, E. 2013. “My Body, my Closet: Invisible Disability and the Limits of Coming out.” In The Disability Studies Reader, 278–332. New York: Rutledge.
   Google Scholar
• Sandström, K. 2007. “The Lived Body — Experiences from Adults with Cerebral Palsy.” Clinical Rehabilitation 21: 432–441.
   PubMed Web of Science ®Google Scholar
• Scully, J. L. 2010. “Hidden Labor: Disabled/Nondisabled Encounters, Agency, and Autonomy.” IJFAB: International Journal of Feminist Approaches to Bioethics 3 (2): 25–42.
   Google Scholar
• Shippee, N. D. 2011. “Gay, Straight, and Who I Am: Interpreting Passing Within the Frames for Everyday Life.” Deviant Behavior 32 (2): 115–157.
   Web of Science ®Google Scholar
• Smith, B., and A. C. Sparkes. 2009. “Narrative Inquiry in Sport and Exercise Psychology: What Can it Mean, and why Might we do it?” Psychology of Sport and Exercise 10 (1): 1–11.
   Web of Science ®Google Scholar
• Sparkes, A. C., and B. Smith. 2002. “Sport, Spinal Cord Injury, Embodied Masculinities, and the Dilemmas of Narrative Identity.” Men and Masculinities 4 (3): 258–285.
   Google Scholar
• Stewart, D., et al. 2014. “Complexities During Transitions to Adulthood for Youth with Disabilities: Person–Environment Interactions.” Disability and Rehabilitation 36 (23): 1998–2004.
   PubMed Web of Science ®Google Scholar
• Stoddard Holmes, M. 2015. “Embodied Storytellers: Disability Studies and Medical Humanities.” Hastings Center Report 45 (2): 11–15.
   Web of Science ®Google Scholar
• Thomas, C. 2004. “Developing the Social Relational in the Social Model of Disability: A Theoretical Agenda.” In Implementing the Social Model of Disability: Theory and Research, edited by C. Barnes and G. Mercer, 32–47. Leeds: The Disability Press.
   Google Scholar
• Thomas, C. 2012. “Theorising Disability and Chronic Illness: Where Next for Perspectives in Medical Sociology?” Social Theory and Health 10 (3): 209–228.
   Web of Science ®Google Scholar
• van Amsterdam, N., Knoppers, A. and Jongmans, M. 2015. “‘It's Actually Very Normal that I'm Different’. How Physically Disabled Youth Discursively Construct and Position their Body/Self.” Sport, Education and Society 20 (2): 152–170.
   Web of Science ®Google Scholar
• Watson, N. 2002. “Well I Know This is Going to Sound Very Strange to you, but I Dont see Myself as a Disabled Person: Identity and Disability.” Disability and Society 17 (5): 509–527.
   Web of Science ®Google Scholar
• Watson, N. 2004. “The Dialectics of Disability: A Social Model for the Twenty-First Century.” In Implementing the Social Model of Disability: Theory and Research, edited by C. Barnes and G. Mercer, 101–117. Leeds: The Disability Press.
   Google Scholar
• Wengraf, T. 2001. Qualitative Research Interviewing - Biographic Narrative and Semi-Structured Methods. London: Sage Publications Ltd.
   Google Scholar
• Zitzelsberger, H. 2005. “(In)Visibility: Accounts of Embodiment of Women with Physical Disabilities and Differences.” Disability & Society 20 (4): 389–403.
   Web of Science ®Google Scholar