ERIC Number: EJ1306545
Record Type: Journal
Publication Date: 2021
Pages: 15
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-0885-6257
EISSN: N/A
Available Date: N/A
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, v36 n3 p329-343 2021
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.
Descriptors: Foreign Countries, Genetic Disorders, Students with Disabilities, Quality of Life, Cultural Differences, Normalization (Disabilities), Adolescents, Young Adults, Transitional Programs, Males, Socioeconomic Influences, Political Influences, Aspiration, Experience, Independent Living
Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Denmark; United Kingdom (England)
Grant or Contract Numbers: N/A
Author Affiliations: N/A