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

Article


Hoskin, J. 2021. Troubling norms? Adults and teenagers with a life-limiting impairment in Denmark and England talk about their lives, support and future plans. European Journal of Special Needs Education. 36 (3), pp. 329-343. https://doi.org/10.1080/08856257.2020.1754545
AuthorsHoskin, J.
Abstract

There are an increasing number of young people with a range of life-limiting impairments in our schools, colleges, universities and communities. One of these impairments is Duchenne Muscular Dystrophy (DMD), a rare, life-limiting genetic muscle-wasting impairment that affects predominantly males. Twenty years ago, most people with DMD did not live past the age of twenty years, but now due to a range of treatments they are living longer. However, education and social care services are often yet to catch up with this improved prognosis. The aim of this paper is to compare the findings from structured conversations with members of the DMD community in Denmark and England. Historically, adults in Denmark have reported a good quality of life with an optimal health care programme and generous social care, whereas adults with DMD in England have reported poor transition to adulthood planning leading to social isolation as an adult. Findings identified three key themes: the existence of normative goals; expertise from lived experience, and the meaning of independence for someone with a complex impairment. These themes are further discussed through the lens of ‘post-human thinking’, and implications for practice are explored.

JournalEuropean Journal of Special Needs Education
Journal citation36 (3), pp. 329-343
ISSN0885-6257
Year2021
PublisherTaylor & Francis
Accepted author manuscript
License
File Access Level
Anyone
Digital Object Identifier (DOI)https://doi.org/10.1080/08856257.2020.1754545
Publication dates
Online16 Apr 2020
Publication process dates
Accepted06 Apr 2020
Deposited20 Apr 2020
Copyright holder© 2020 Taylor & Francis
Copyright informationThis is an Accepted Manuscript of an article published by Taylor & Francis in European Journal of Special Needs Education on 16/04/2020, available online: http://www.tandfonline.com/10.1080/08856257.2020.1754545.
Permalink -

https://repository.uel.ac.uk/item/87x85

Download files


Accepted author manuscript
Final Troubling Norms JHoskin 24.3.2020.pdf
License: All rights reserved
File access level: Anyone

  • 199
    total views
  • 72
    total downloads
  • 7
    views this month
  • 0
    downloads this month

Export as

Related outputs

‘More than a just a physical condition’ – recognising the educational and emotional needs of children and young adults with duchenne muscular dystrophy
Hoskin, J., James, B. and Finch, J. 2024. ‘More than a just a physical condition’ – recognising the educational and emotional needs of children and young adults with duchenne muscular dystrophy. European Journal of Special Needs Education. p. In Press. https://doi.org/10.1080/08856257.2024.2433329
“I Forgot My Numbers and the Machine Swallowed It Up”: Adults With Learning Disabilities Share Their Perspectives on the Shift to a Cashless Society
Watts, P., Hoskin, J., Upadhyay, R., Tapley, E. and Kwiatkowska, G. 2024. “I Forgot My Numbers and the Machine Swallowed It Up”: Adults With Learning Disabilities Share Their Perspectives on the Shift to a Cashless Society. British Journal of Learning Disabilities. p. In Press. https://doi.org/10.1111/bld.12621
Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study
Hoskin, J., Cheetha, T. D., Mitchell, R. T., Wong, S. C. and Wood, C. L. 2024. Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study. Muscle & Nerve. 70 (3), pp. 402-408. https://doi.org/10.1002/mus.28201
Workshop report: Workshop on psychiatric prescribing and psychology testing and intervention in children and adults with Duchenne muscular dystrophy
Bouquillon, L., Bindman, D., Hendriksen, J., Collin, P., Hoskin, J., Conn, R., Geagan, C. and Quinlivan, R. 2024. Workshop report: Workshop on psychiatric prescribing and psychology testing and intervention in children and adults with Duchenne muscular dystrophy. Research Ideas and Outcomes. 10 (Art. e119243). https://doi.org/10.3897/rio.10.e119243
Entering Adulthood with Duchenne Muscular Dystrophy: A Pathfinders Report
Glover, S., Hale, J., Roberts, M., Bosanquet, J., Dack, R., Hoskin, J., Peat, G. and Abbott, D. 2023. Entering Adulthood with Duchenne Muscular Dystrophy: A Pathfinders Report. Pathfinders: Neuromuscular Alliance.
Report on the Psycho-Social Needs and Support in Duchenne Muscular Dystrophy: The ‘Cinderella’ of DMD Care
Hoskin, J. 2022. Report on the Psycho-Social Needs and Support in Duchenne Muscular Dystrophy: The ‘Cinderella’ of DMD Care. Duchenne UK.
Education, Health and Care Plans
Arnold, L. and Hoskin, J. 2021. Education, Health and Care Plans. in: Beaton, M. C., Codina, G. N. and Wharton, J. C. (ed.) Leading on Inclusion: The Role of the SENCO Taylor & Francis (Routledge).
Accessible Housing Campaign Report
Rey-Hastie, J. and Hoskin, J. 2021. Accessible Housing Campaign Report. Pathfinders: Neuromuscular Alliance.
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?
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 (3), pp. 265-291. https://doi.org/10.1111/1467-8578.12271
Psychosocial Management of the Patient With Duchenne Muscular Dystrophy
Colvin, M. K., Poysky, J., Kinnett, K., Damiani, M., Gibbons, M., Hoskin, J., Moreland, S., Trout, C. J. and Weidner, N. 2018. Psychosocial Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics. 142 (Supplement 2), pp. S99-S109. https://doi.org/10.1542/peds.2018-0333L
Improving the reading skills of young people with Duchenne muscular dystrophy in preparation for adulthood
Hoskin, J. and Fawcett, Angela 2014. Improving the reading skills of young people with Duchenne muscular dystrophy in preparation for adulthood. British Journal of Special Education. 41 (2), pp. 172-190. https://doi.org/10.1111/1467-8578.12062
Book Reviews
Hoskin, J. and Robertson, G. 2017. Book Reviews. Research in Teacher Education. 7 (1), pp. 33-34. https://doi.org/10.15123/uel.891xx
Research in Teacher Education: Volume 7, No.1, May 2017
Garby-Czerniawski, G., Hudson, A., Smith, M., Bell, C., Baker, A., Archer, L., Hoskin, J. and Robertson, G. 2017. Research in Teacher Education: Volume 7, No.1, May 2017. The School of Education and Communities, University of East London. https://doi.org/10.15123/uel.891x1
Taking charge and letting go: exploring the ways a Transition to Adulthood project for teenagers with Duchenne muscular dystrophy has supported parents to prepare for the future
Hoskin, J. 2017. Taking charge and letting go: exploring the ways a Transition to Adulthood project for teenagers with Duchenne muscular dystrophy has supported parents to prepare for the future. British Journal of Special Education. 44 (2), pp. 165-185. https://doi.org/10.1111/1467-8578.12173