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Articles

Troubling norms? Adults and teenagers with a life-limiting impairment in Denmark and England talk about their lives, support and future plans

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Pages 329-343 | Received 03 Nov 2019, Accepted 06 Apr 2020, Published online: 16 Apr 2020

References

  • Abbott, D., J. Carpenter, B. E. Gibson, J. Hastie, M. Jepson, and B. Smith. 2019. “Disabled Men with Muscular Dystrophy Negotiate Gender.” Disability and Society 34: 5. doi:10.1080/09687599.2019.1584093.
  • Abbott, D., J. Carpenter, and K. Bushby. 2012. “Transition to Adulthood for Young Men with Duchenne Muscular Dystrophy: Research from the UK.” Neuromuscular Disorders 22: 445–446. doi:10.1016/j.nmd.2012.02.004.
  • Baeten, G., L. D. Berg, and A. Lund Hansen. 2015. “Introduction: Neoliberalism and Post-welfare Nordic States in Transition.” Geografiska Annaler: Series B, Human Geography 97 (3): 209–274.
  • Bates, K., D. Goodley, and K. Runswick-Cole. 2017. “Precarious Lives and Resistant Possibilities: The Labour of People with Learning Disabilities in Times of Austerity.” Disability & Society 32 (2): 160–175. doi:10.1080/09687599.2017.1281105.
  • BERA (2018) Ethical Guidelines for Educational Research Fourth Edition, BERA. Accessed May 2019. https://www.bera.ac.uk/publication/ethical-guidelines-for-educational-research-2018-online)
  • Birnkrant, D. J., K. Bushby, C. M. Bann, S. D. Apkon, A. Blackwell, M. K. Colvin, L. Cripe, et al. 2018. “Diagnosis and Management of Duchenne Muscular Dystrophy, Part 3: Primary Care, Emergency Management, Psychosocial Care, and Transitions of Care across the Lifespan.” The Lancet Neurology 17 (5): 445–455. doi:10.1016/S1474-4422(18)30026-7.
  • Blackmore, J. 2000. “Can We Create a Form of Public Education that Delivers High Standards for All Students in the Emerging Knowledge Society?” Journal of Educational Change 1 (pp): 381–387. doi:10.1023/A:1010086923821.
  • Bourdieu, P. 1991. Language and Symbolic Power. Cambridge, MA: Harvard University Press.
  • Braidotti, R. 2013. The Posthuman. UK: Polity Press.
  • Braun, V., and V. Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology 3 (2): 77–101. doi:10.1191/1478088706qp063oa.
  • Burch, L. F. 2017. “Governmentality of Adulthood: A Critical Discourse Analysis of the 2014 Special Educational Needs and Disability Code of Practice.” Disability & Society 33 (1): 94–114. doi:10.1080/09687599.2017.1383231.
  • Bushby, K., R. Finkel, D. J. Birnkrant, L. E. Case, P. R. Clemens, L. Cripe, A. Kaul, DMD Care Considerations Working Group, et al. 2010. “Diagnosis and Management of Duchenne Muscular Dystrophy, Part 1: Diagnosis, and Pharmacological and Psychosocial Management.” The Lancet Neurology 9 (1): 77–93. doi:10.1016/S1474-4422(09)70271-6.
  • Campbell, F K. 2009. Contours of Ableism: The Production of Disability and Abledness. New York: Palgrave Macmillan. doi:10.1057/9780230245181.
  • Children and Families Act. 2014. Accessed 15 August 2019 http://www.legislation.gov.uk/ukpga/2014/6/contents/enacted
  • Commission, Care Quality (2014). From The Pond into The Sea Children's Transition to Adult Health Services. [online] Care Quality Commission. Available at: https://www.cqc.org.uk/sites/default/files/CQC_Transition%20Report.pdf
  • Cresswell, J.W., and J.D. Cresswell. 2018. Research Design Qualitative, Quantitative, and Mixed Methods Approaches 5th ed (International Student Edition) Los Angeles: Sage
  • De Shazer, S., and Y. Dolan. 2007. More than Miracles: The State of the Art of Solution-focused Brief Therapy. Abingdon and New York: Haworth Press.
  • Dreyer, P., B. Steffensen, and B. Pedersen. 2010. “Living with Severe Physical Impairment, Duchenne’s Muscular Dystrophy and Home Mechanical Ventilation.” International Journal of Qualitative Studies on Health and Wellbeing 5 (3): 753–62.
  • Duffy, S. 2013. “Briefing on How Cuts are Targeted.” Centre for Welfare Reform online at. Accessed 15 August 2019 http://www.centreforwelfarereform.org/library/by-az/briefing-on-how-cuts-are-targeted.html
  • Eagle, M., J. Bourke, R. Bullock, M. Gibson, J. Mehta, D. Giddings, V. Straub, and K. Bushby. 2007. “Managing Duchenne Muscular Dystrophy- the Additive Effect of Spinal Surgery and Home Nocturnal Ventilation in Improving Survival.” Neuromuscular Disorders 17: 470–475. doi:10.1016/j.nmd.2007.03.002.
  • Education Select Committee 1st Report Special Educational Needs and Disabilities. HC 20 Published 23 October 2019. Accessed 23 October 2019 https://publications.parliament.uk/pa/cm201920/cmselect/cmeduc/20/2002.htm
  • Education Select Committee. (2019). Special educational needs and disabilities. 1st report. Retrieved from https://publications.parliament.uk/pa/cm201920/cmselect/cmeduc/20/2002.htm.
  • Emery, A., and F. Muntoni. 2003. Duchenne Muscular Dystrophy. 3rd ed. Oxford: Oxford University Press.
  • Fraser, L., M. Miller, R. Hain, P. Norman, J. Aldridge, P. McKinney, and R. Parslow. 2012. “Rising National Prevalence of Life-limiting Conditions in Children in England.” Pediatrics 129 (4): e923–929. doi:10.1542/peds.2011-2846.
  • Gibson, B. E., B. Mistry, B. Smith, K. K. Yoshida, D. Abbott, S. Lindsay, and Y. Hamdani. 2014. “Becoming Men: Gender, Disability, and Transitioning to Adulthood.” Health 18 (1): 93–114.
  • Gibson, B. E., N. L. Young, R. Upshur, P. McKeever. 2007. “Men on the Margin: A Bourdieusian Examination of Living into Adulthood with Muscular Dystrophy.” Social Science & Medicine 65 (3): 505–517. doi:10.1016/j.socscimed.2007.03.043.
  • Goodley, D., K. Runswick-Cole, and K. Liddiard. 2016. “The DisHuman Child.” Discourse: Studies in the Cultural Politics of Education 37 (5): 770–784.
  • Goodley, D., R. Lawthom, and K. Runswick-Cole. 2014. “Dis/ability and Austerity: Beyond Work and Slow Death.” Disability & Society 29 (6): 980–984. doi:10.1080/09687599.2014.920125.
  • Hodgson, G. 2018. “What the World Can Learn about Equality from the Nordic Model.” The Conversation. Accessed 10 October 2019. https://theconversation.com/what-the-world-can-learn-about-equality-from-the-nordic-model-99797
  • Hoskin, J. 2019. “Aspiration, Austerity and Ableism. To What Extent are The 2014 Send Reforms Supporting Young People with a Life‐limiting Impairment and Their Families to Get The Lives They Want?” British Journal of Special Education 46: 265–291.3.
  • Landfeldt, E., P. Lindgren, C. F. Bell, M. Guglieri, V. Straub, H. Lochmuller, and K. Bushby. 2015. “Health-related Quality of Life in Patients with Duchenne Muscular Dystrophy: A Multinational, Cross-sectional Study.” Developmental Medicine & Child Neurology. doi:10.1111/dmcn.12938.
  • Liddiard, K., S. Whitney, K. Evans, L. Watts, E. Vogelmann, R. Spurr, C. Aimes, K. Runswick-Cole, and D. Goodley. 2019. “Working The Edges of Posthuman Disability Studies.” Theorising with Disabled Young People with Life-limiting Impairments Sociology of Health And Illness 41 (8): 1473–1487. doi:10.1111/shil.v41.8.
  • Lynch, K. 2006. “Neo-liberalism and Marketisation: The Implications for Higher Education.” European Educational Research Journal 5 (1): 1–17. doi:10.2304/eerj.2006.5.1.1.
  • Macintosh, I., and S. Wright. 2019. “Exploring What the Notion of ‘Lived Experience’ Offers for Social Policy Analysis. Journal of Social Policy Analysis.” Journal of Social Policy 48 (3): 449–467. doi:10.1017/S0047279418000570.
  • Mailand, M. 2014. “Austerity Measures and Municipal Ties: The Case of Denmark.” Transfer 20 (3): 417–430.
  • Oliver, M. 1990. The Politics of Disablement. Basingstoke: Macmillan.
  • Oliver, M. 1992. “Changing the Social Relations of Research Production? Disability.” Handicap and Society 7: 2. 2.
  • Priestly, M. 2003. Disability: A Life Course Approach. Cambridge: Polity Press.
  • Rahbek, J., B. Werge, A. Madsen, C. Fynbo, B. Steffensen, and J. Jeppesen. 2005. “Adult Life with Duchenne Muscular Dystrophy: Observations among an Emerging and Unforeseen Patient Population.” Paediatric Rehabilitation 8 (1): 17–28. doi:10.1080/13638490400010191.
  • Ratner, H., E. George, and C. Iveson (2012). Solution Focused Brief Therapy. Solution focused brief therapy: 100 key points and techniques. Routledge/Taylor & Francis Group. doi:10.4324/9780203116562
  • Ryan, F. 2019. Crippled: Austerity and the Demonisation of Disabled People. London: Verso London.
  • Sayce, E. 2011. Getting In, Staying in and Getting On. Disability Employment Support Fit for the Future. A Review to Government Department for Work and Pensions. London: Stationery Office.
  • Stevens, M. M., B. A. Lord, M. Proctor, S. Nagy, and E. O’Riordan. 2010. “Research with Vulnerable Families Caring for Children with Life-limiting Conditions.” Qualitative Health Research 20 (4): 496–505. doi:10.1177/1049732309356097.
  • Wood, C. 2012. For Disabled People, the Worst Is yet to Come …, Destination Unknown: Summer 2012. London: Demos.

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