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▶︎ A Space in Time is In cinemas and streaming via bohemiamedia.co.uk from 17 May.
Nick Taussig and his wife Klara, an artist, were blindsided five years ago when their toddler sons Theodor and Oskar were diagnosed with Duchenne muscular dystrophy, and at first the couple felt as if their universe was collapsing.
A Space in Time, directed by Nick (a producer whose notable credits include the 2018 documentary biopic McQueen and Andrew Kötting’s Lek and the Dogs, 2017) and Riccardo Servini, tells how the family have carried out the slow and demanding day-to-day work of adapting their world. They hired architects to create a purpose-built home, and have revolutionised their own preconceived ideas about what constitutes a well-lived life. Intimate and candid, this awareness-raising documentary does not skirt around the tough realities of Duchenne or fall back on easy sentiment, as it shows that disability need not be synonymous with tragedy.
Theodor and Oskar resist accepting that they are not recovering, even as their ability to walk steadily deteriorates, and their parents gently reason with them. Duchenne is a genetic muscle-wasting disorder that begins to affect children around age four, has no known cure, and shortens lives to an expected age of 26.
The endless hospital visits and the knowledge that their children will likely die before them weigh on Nick and Klara, and the statistic that 90 percent of parents of children with Duchenne will divorce hangs over their marriage. The strain is compounded by economic factors (the family squeezes into a makeshift cabin in the yard for more than a year while the house is constructed) and the stigma from often uninformed, intrusive societal scrutiny (the couple’s decision to have another baby, Luca, using screened IVF embryos, to add a new dimension to the family dynamic and allow them to bank the newborn’s stem cells, prompts some unsolicited judgement).
Klara, more hands-on in daily parenting, speaks frankly of moments of despair occasionally creeping in. She relies on yoga and creating art to maintain a sense of self amid the all-consuming presence of Duchenne. Ample joy, however, bursts from the frame in home-recorded footage of day-to-day moments of connection, family time valued all the more for being so transient. Lyrical shots of nature’s beauty position the family in a wider cycle of existence in all its unpredictability.
Older friends with Duchenne help the boys and their parents grasp what to expect as Theodor and Oskar age – and to see possibilities not circumscribed by disability. Jon, in his thirties, is dependent on a ventilator for breathing and challenges the stigma of wheelchairs, equating them instead with greater independence. A rainbow Pride flag hangs by his bed, and he speaks of his marital contentment with his husband. An activist voice for comfort in difference, he stresses that society’s attitudes and structures create at least as many hurdles as the condition itself, arguing convincingly that many of his difficulties spring from an environment not designed to be accessible or inclusive.
The Taussigs have taken this perspective on board, recognising the way that architecture determines our scope for personal agency. In his charity runs, Nick has raised funds both for research, not giving up hope for medical advances, and for the new house, designed to maximise quality of life so that his children’s fulfilment is not left conditional on a cure.
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