Disabled children and young people have significant things to say about their lives and experiences, including life at home, education, socialising, and managing their health. Hearing from them is important, and this research project is based on interviews conducted with boys and young men who have Duchenne muscular dystrophy (DMD). They shared their thoughts on decision-making, and explained some of the challenges they encounter in daily life.
DMD is a condition that mostly affects boys; over time their muscles become weaker, and they require a wheelchair to maintain mobility.
During interviews, they explained what independence means to them, how they approach making healthcare decisions, and experiences of disablist attitudes. In our new project, we will be using animation and artwork to depict aspects of what the boys and young people said.
This poster highlights some of the key issues which will be explored further in upcoming work.