A film exploring some of the thoughts and insights of boys and young men with Duchenne muscular dystrophy.
The combination of images, words and music portray some key points from interviews conducted by Dr. Sarah Skyrme with boys and young men with Duchenne. Animator Jeremy Richard has brought the boys’ words to life, accompanied by a sensitive, original music score composed by Wez Allard. Lynda McCarthy has provided her expert guidance and support to the making of the film.
Funded by The Wellcome Trust through the British Academy/Leverhulme Small Research Grants Scheme (reference: SRG2324\241482).
The references in the film are:
- In and On their Own Terms: Children and Young People’s Accounts of Life with Duchenne Muscular Dystrophy. Skyrme, S (2016)
- “The things that are inside of you are horrible”: Children and young men with Duchenne muscular dystrophy talk about the impact of living with a long term condition. Abbott, D., & Carpenter, J. (2015)
Transcript
Character: They talk to you like you’re stupid. Quite condescending. There’s nothing wrong with me. It’s just my muscles.
Title card: In and On their Own Terms
Narrator: Duchenne muscular dystrophy is a muscle wasting condition that mainly affects boys and young men. Over time their muscles get weaker until they need to use a wheelchair to stay mobile.
Disabled children and young people do not have many role models and it can be hard for them to talk frankly
about their health and mobility problems without evoking pity, teasing or miscomprehension.
Representations of disability are often negative and disabled childhoods can be associated with stigma and loss. It is unsurprising then that they may be unwilling to disclose more than necessary about their condition.
Character: I don’t really tell my friends about my condition. I don’t want to be treated differently, ‘cos they might feel sorry for me or something, which I don’t like.
Narrator: Talking about bodies often takes place in clinical settings, or when applying for benefits. This can limit the opportunities for disabled children and young people to speak about the things that matter to them, rather than these options being defined by others.
Character: Treat them like a person. Just because they’ve got a disability doesn’t mean they can’t talk back to you properly.
Narrator: Young adults tend to have more physical freedom, however, for severely disabled young people this can be challenging to achieve. But incorrect assumptions about their competence and abilities are unhelpful. And their views contribute to insights on the diversity of young, disabled lives.
Listening to what they have to say about themselves creates opportunities for understanding different ways of living. And they must be offered opportunities to speak up in and on their own terms.
Credits card:
In and On their Own Terms
References card:
- Source
- In and On their Own Terms: Children and Young People’s Accounts of Life with Duchenne Muscular Dystrophy. Skyrme, S (2016)
- “The things that are inside of you are horrible”: Children and young men with Duchenne muscular dystrophy talk about the impact of living with a long term condition. Abbott, D., & Carpenter, J. (2015)
In and On their Own Terms by Sarah Skyrme is licensed under CC BY-NC-ND 4.0
