10 May 2021
© The Guardian
Here is a deeply personal documentary that raises awareness about a disability without neglecting the interiority of those living with the condition. Co-directed by Riccardo Servini and Nick Taussig, the film follows the Taussig family’s experience of Duchenne muscular dystrophy, a genetic disorder that affects their young sons, Theo and Oscar.
Duchenne is incurable and fatal. By the time Theo and Oscar are in their teens, they will be using wheelchairs full time; their 20s will come with ventilators. Throughout the film, Taussig gently explains these realities to his sons, with no sugarcoating. Satisfying children’s curiosity has never been easy, and here the task is made even more difficult when science itself has yet to provide all answers.
The recurring juxtaposition of these conversations with Theo and Oscar playing in the garden or getting dressed for school captures how the condition, while debilitating, is also just one facet of their lives. At one point, the inquisitive Theo asks if ice cream can cure Duchenne. The boys’ experiences are rendered acutely intimate, normalised and without hollow pity.
The film also places a poignant emphasis on community and accessibility. Thanks to the goodwill of a building company, the Taussigs’ house is designed to meet the needs of their sons, including wide hallways to provide easy access for their wheelchairs. Interviews with people at different stages of Duchenne and their families illuminate how the condition progresses and also highlight the solidarity among them.
Moments of darkness recur throughout the film, the final shot of the Taussigs sitting and laughing on a swing says it all. The future will always be shifting and uncertain, but they, and their community, are all in this together.