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.
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Accepted author manuscript
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