Duchenne muscular dystrophy (DMD) is a condition explored in depth in A SPACE IN TIME (2021), which premiered on Bohemia Euphoria on the 1st of July. The documentary is a poignant portrait of how Nick and Klara Taussig, together with their two young sons, struggle to understand disability and are forced to stay present amidst the challenges of building a new, more accessible home after both sons are diagnosed with DMD.
Mostly affecting the male gender, Duchenne muscular dystrophy is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of dystrophin in the body, a protein that helps keep muscles intact. While there is no cure for DMD, the NHS recommends a range of treatments including medication and mobility assistance that can “help with the physical disabilities and problems that may develop.”
In advance of the premiere of the film, Bohemia Euphoria hosted a virtual discussion, What The **** Is Normal Anyway? between comedian, writer and actress Francesca Martinez who has cerebral palsy (she prefers to describe herself as “wobbly”) and Dr. Jon Rey-Hastie, who turned 40 in February this year and has been living with DMD all his life. Though he lost the ability to walk by his 10th birthday and uses an electric wheelchair and a ventilator to aid his breathing, his age is immensely significant because the average lifespan of a person living with DMD is between 26 and 27 years. Dr Rey-Hastie has a PhD and is the CEO of DMD Pathfinders, which he co founded in 2014 and is the primary subject of his documentary film A Life Worth Living: Pushing the Limits of Duchenne (2012).
Among one of the topics of their discussion was the notion of a cure and how to navigate the slippery slope of becoming consumed with chasing the idea of it as opposed to living to the best of their ability.
Dr Jon Rey-Hastie: The other thing about having Duchenne, that narrative around finding a cure is always there, for me I was involved in fund-raising, to try and find a cure, you are always thinking of a treatment or cure for Duchenne for the future and that giving hope, so that shapes how you see that as well I guess. Was that something you experienced? How is it for you looking at the film, and that focus on the cure idea?
Francesca Martinez: I can relate in some way, because there was a lot of emphasis put on exercising in my childhood, because the doctors told them my kind of CP would improve with repeated exercise, so obviously there was encouragement from my parents to do them. So I felt undermined with what I perceived as trying to make me more normal.
There is a fine line between being the best you can be and encouraging your child to be as capable as they can, and being careful for making them feel not good enough, or they have to attain some kind of ‘normal’ measure in things. I remember the medical world making me feel quite faulty, but the way I did things naturally was wrong, so there is a slight tension isn’t there? Between more independence, but also making people feel good enough as they are. I imagine with the emphasis on the cure for Duchenne, I imagine that may create complicated feelings too.
Dr Jon Rey-Hastie: I think so, sometimes. Yeah, I mean, because, for me, particularly where you have lost the ability and can remember what it was like to have that, often you think, actually I would like to be able to do that again, so it is complicated, I personally struggled, like really connect with the idea of disability pride, because although, I am proud the life I have, you know, if I was given the choice to regain some abilities, then I probably would take it. So it is complicated. I don’t have disability pride in the same way, you know I have gay pride for example. I wouldn’t change being gay, but I would change if I could, being disabled, so a complicated thing to get your head around.
Francesca Martinez: I understand, but I think the two can coexist, you can quite easily say, if there was a cure for Duchenne I would take it, but also say, I am happy with my life and I love myself and there is value in what I do and in being different. Which I would like to talk to you about later. But I want to come back and ask you, how open were your parents with you about the progressive element of your disease, like were they honest about what you would encounter, or was that a process, or as they or you got older, did they talk to you more about what would happen…
You can watch the full discussion, What The **** Is Normal Anyway? online on Bohemia Euphoria and stream the more elaborate panel discussion that followed the next day on July 1st directly after the premiere of the film.
The question that lingers after witnessing this discussion, a popular debate in disabled communities is what it means to wait for a cure. Is a fixation on finding a cure as a disabled person the best way to lead your life and hopes? You can continue the discussion on the community feed page of our website!