‘I just try to be independent as much as possible’: Duchenne muscular dystrophy, agency and contextualised competence

Sarah Skyrme
  • Global Studies of Childhood, October 2016, SAGE Publications
  • DOI: 10.1177/2043610616671062

Duchenne muscular dystrophy, agency and contextualised competence

What is it about?

Boys and young men with Duchenne muscular dystrophy live with increasing muscle weakness and poor mobility, however, they can exercise agency through being effectively involved in discussions about their healthcare and the possibility of taking part in medical research. The article draws on the sociology of childhood and disability studies to explore the participants' developing sense of autonomy and their competence to be involved in decision-making.

Why is it important?

The article explores the experiences of children and young people with a severe, life-limiting condition, and situates their lives as having meaning and autonomy, this challenges portrayals of them as being 'vulnerable', immature and lacking competence.


Dr Sarah Louise Skyrme
Newcastle University

In this article I wanted to depict the participants' eloquence and their astute commentary on disablist attitudes and the low expectations some may have for them. The participants clearly expressed a developing sense of self-hood, maturity and competence.

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