A SPACE IN TIME (2021) 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 Duchenne muscular dystrophy (DMD).
Both born with the genetic, progressive and fatal muscle wasting disease three years apart, Theodor and Oskar Taussig are shown to possess an admirable level of awareness about their condition, which can be attributed to their parents’ honesty led approach to helping them manage it. At the time of the filming of the documentary, the Taussig boys were of the ages 5 and 3 respectively.
In advance of the premiere of A SPACE IN TIME, 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 since, 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. He is also 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).
During the course of his conversation with Francesca, Jon noted that he is competitive by nature:
“I felt once people got to know me, their expectations changed… I am naturally quite a competitive person, not just competing against expectations of society, but competing against everybody and other disabled people… also academically successful, I compete against that…”
This helped him in his childhood, especially to navigate the conflicting views of his abilities, with his family encouraging him to remain ambitious because they believed he would succeed versus external parties, such as a former teacher, who had incredibly low expectations of him because of his disability. An impressive feat, Jon completed his PhD in Government from the University of Sussex in 2008.
A SPACE IN TIME premiered on Bohemia Euphoria on the 1st of July, the day after What The **** Is Normal Anyway? went live and was followed by a live Q&A between guest host, filmmaker and disability activist Kyla Harris, co-director as well as father of the film’s subjects Nick Taussig and Dr. Jon Rey-Hastie once more.
Our three panelists discussed a range of topics, from parenting styles, “the white noise of everyday ableism”, the effect of COVID-19 on the disabled community and well executed representation in mainstream media, such as on Netflix to reflecting on how the capitalist structure, which relies so heavily on labour and productivity, by nature excludes and devalues disabled individuals.
Jon and Kyla share the view that disability is not something that can be extracted from any part of their lives, admitting that while it is indeed a defining part of them, it is not the only defining part of their lives.
Nick stated that “there are times when” his family needs “to be part of the Duchenne community” but “you don’t want to be defined by it.” “We are far more than our disabilities, than our illnesses, it’s about finding that balance between the two, we don’t want to be defined… we are defined by Duchenne and I am as well” but “you don’t want it to rule your life.”
The film was summed up accurately by Kyla at the end of the interview and Q&A session, which lasted for about 45 minutes:
“It is so rare to see a film featuring disabled people, their parents and carers and have a film that challenges notions of what it means to be disabled from so many perspectives.”
In addition to the two Euphoria livestreams, Picturehouse hosted a premiere event for the film, including a recorded introduction by Francesca Martinez and a post film screening panel discussion with the filmmakers Nick Taussig and Riccardo Servini, Klara Taussig and Dr Jon Rey-Hastie.
Co-director Riccardo Servini speaks about what it was like stepping into the home of the Taussig’s to create the documentary.
“…They’re kids and you want certain things and documentary filmmaking is complicated. You want to capture reality but you also want to push things in certain directions and sometimes the kids weren’t completely on board. I had to bribe them with being able to play on the Nintendo Switch for five minutes if they gave me four minutes of their time.. I literally met the kids and we were filming five minutes later..”
The family were confined to living in a small outdoor cabin for a minimum of 13 months while Ballymore, a UK property development company undertook the project of converting their newly purchased but rundown countryside home into a modern and accessible one out of goodwill. This made the filming process all the more complicated because of the crowd; Nick, Klara, their two sons and the later addition of a third, Luka, in addition to their two dogs, the construction crew and the film crew.
The conclusion of the panel discussion was a refreshing perspective. We should all aim to look at “humanity on a spectrum; we all have things we can and cannot do, we all have challenges… some of those are invisible and some of those are very visible.” By doing this we will get one step closer to dismantling the harmful attitudes of ableism.
You can stream the virtual discussion between Francesca Martinez and Dr. Jon Rey-Hastie (June 30th) here and watch A SPACE IN TIME online alongside the exclusive interview and Q&A between Kyla Harris, Nick Taussig and Dr. Jon Rey-Hasti (July 1st) here. The film is also available in cinemas across the UK.
Keeping UK indie cinemas thriving as the beating hearts of their communities, is a cause very close to Bohemia Euphoria’s own. Thank you for streaming with our on-demand service!