When my friend first came over to my newly refurbished home and saw my kitchen, they cried. And I knew exactly what they were feeling. They weren’t wowed by luxury, and they weren’t tears of empathy for the condition of my home. My friend is a wheelchair user. So am I, and I refurbished my kitchen to have a wheelchair accessible hob that can be wheeled under. They cried because they felt an untethered freedom that is so infrequently felt when you are a disabled person.
When I watched A Space In Time, a film about a family, including two sons with a muscle wasting condition Duchenne Muscular Dystrophy, that embarks on a journey to create an accessible home for themselves, I could completely empathise. I didn’t need to be a child with Duchenne Syndrome, or a parent of one, to know in the marrow of my bones how essential an accessible house is when you are disabled. There are many fantastic aspects of being disabled but the inability to access your friends homes, workplaces and society at large can be isolating and wearing. Because of this, the sense and practical aspects of home have always been important to me. I knew the journey they went on, of realising that denying adaptations was not an option, of being displaced whilst refurbishments were taking place and the never ending bills that only disability carries.
As the parents Nick and Klara strive to build a space for their family, they run into quickly mounting costs. Nick reflects on the building company and people that volunteered to cover the extensive adaptations to the house, “The whole thing relied on a lot of goodwill”. But to me, this raises the question, should we have to rely on ‘goodwill’ to have our basic needs met? In my case, I was able to afford the purchase and refurbishment of my home after receiving a settlement because of my accident, and I consider myself fortunate because of that. But I have other disabled friends who have not been so ‘lucky’, and again, an important question arises, should our basic needs, to access our homes in the same way non-disabled people do, rely on ‘luck’?
Along with housing being a human right, the home is where we have conversations, rest, play, nurture and comfort ourselves, where we parent, where we build community or finally escape to solitude. In the film Dr. Jon Rey Hastie, a man in his late 30s with Duchenne, who lives with his husband and has personal assistants, explains how the social model of disability dictates that barriers in society are what disables us. If our homes are where we experience the gamut of human emotions and are meant to be safe spaces, especially from the barriers of society, it is imperative that our homes are accessible to us. A conversation between Nick and his eldest son Theo provides one of the best examples of this.
1 – According to the Adaptations and Accessibility Report in 2014, only 7% of homes in the UK have accessibility features that provide visitability for disabled people.
As Theo plays with a bare wall where the door to his future bedroom will be, he says “Will my bedroom door always be open, Daddy?…I don’t want it to get locked so that I can’t get to your bedroom if I need a cuddle, Daddy”, with heart wrenching candour. The frankness that Theo expresses his worry of his parents room being inaccessible to him is quickly reassured when Nick replies, “Cuddles are important”. As a wheelchair user, I have become relatively numb to the physically inaccessible world I live in. When I see the adaptations and changes beginning to transform their home, I view it with what I call spatial resonance, the feeling of possibility and excitement I get when I see or encounter a space that I can fully access. Roughly 95% (or more) of the time, public and private spaces are inaccessible to me. When I experience spatial resonance, I feel unlimited, non-judgemental, unconditional freedom unlike any other feeling in my life. I also imagine the potential of a physically accessible future and the utopian anti-ableist* mindset that could follow.
It’s clear that whilst Klara and Nick are trying to provide their children with as much support that they can, the only certainty they can provide (for all three of their children), is that the space around them will be suitable for them. As we all have bodies that change (and if we’re privileged, bodies that age), we will always navigate a world that will forever be unpredictable. However, the Taussig parents give the only certainty they can to their children, the gift and equally the necessity of an accessible future. A future we all deserve.
On July 1st at 7pm join Kyla Harris in-conversation with director Nick Taussig (Director of A SPACE IN TIME) and Dr Jon-Rey Hastie (CEO of Pathfinders Neuromuscular Alliance), following a live stream screening of A Space In Time on www.bohemiaeuphoria.com. Tickets available now.
* Ableism is a societal framework that views non-disabled people as preferable to disabled people and is manifested in thoughts, habits, language and physical spaces. Read more.