Producer – Shawn Sobers
Directors – Shawn Sobers and Sharon Townson
Illustration – Karen Wallis
Before being approached to make this film I had heard of muscular dystrophy, but the name Duchenne was new to me. On reading up about the condition, and listening to the audio interviews with the 20 men who talked to the researchers, I was struck by how advances in medical science are creating new sets of questions for this emerging community to engage with, for example – how do grown men negotiate living with DMD in a system which was only previously equipped to support boys and young adults with the condition?
Considerations such as the relationship between them and their parents as they become men; and the gender dynamics between them and their carers, were previously largely unchartered territory for reflective conversation, and the reality of forming loving and sexual relationships and starting a family, was beyond the lived experiences of those with DMD, and therefore not catered for by the systems that were in place to support them. Though as this research shows, it is time for the medical and support systems to adjust to these new realities.
The men in this study talked about their experience with candour, humour, and in a ‘matter of fact’ way, which would disarm anyone who attempted to take pity on them. This ‘matter of fact’ ethos was the starting point which informed the style of how we made the film.