Dyspraxia and the ghost in the machine
Once, while I was volunteering at the children’s section of a literature festival, I had to dress up in a giant Horrid Henry mascot costume. It encased me, a thick shell around my body. I walked slowly, like I was wading through water, especially since I could hardly see where I was going through the eyeholes. I felt hot and couldn’t breathe properly.
In some ways, how I felt wearing that costume is how I feel all the time. As far back as I can remember, it’s felt like my essential identity — my brain, or even my soul — is trapped inside my body, with a cold, empty space between it and the walls. My body, who I will call Physical Rosemary, is a separate person. Soul Rosemary relies on her to move us both through the world, giving her a constant stream of orders to direct her movements, but Physical Rosemary always responds too quickly or too abruptly, too lightly or too heavy-handedly, or ignores the orders altogether. Not only that, but whenever I have to do a task that involves manipulating a physical object with any dexterity, it feels like the object itself rebels against my hand. When I practice a given action again and again, I don’t get better at it, and when I try to learn a skill by watching someone else demonstrate it, or seeing it shown in diagrams, my brain scrambles it so I can’t recreate it. It’s half a horror story, about being trapped in a body that’s not really mine, and half a farce where I’m the butt of the joke.
The mind-body problem — the question of whether the mind and the body should be understood as separate from each other, or a single unit — is an old one in philosophy. The seventeenth century philosopher René Descartes argued for mind-body dualism. In the twentieth century, British philosopher Gilbert Ryle criticised this idea, describing the idea of a split between mind and body as an imaginary “Ghost in the Machine.” Science backs up the view that mind and body are one. Our emotions are rooted in our nervous system and other parts of the body. There is evidence that our physical health can be worsened by stress and trauma.
I don’t know how to reconcile these arguments with the fact that I, personally, feel like I’m a ghost in a machine. Physical Rosemary and Soul Rosemary are completely separate from one another. Physical Rosemary imprisons Soul Rosemary and blocks her from the things she wants to do. I’ve never had any time for extortions to be body positive, to love your body, for the touchy-feely ‘self care’ of yoga and massages. I certainly don’t love or feel positive about Physical Rosemary. I’ve tried to do activities that are specifically meant to put you in touch with your body and I just can’t feel her.
As a child, I couldn’t catch a ball. I came last in any race. I hated learning how to ride a bike because I constantly felt like I was about to fall off. My handwriting was atrocious. I couldn’t tie my shoelaces. My drawings and craft projects were terrible. At the same time, I also struggled to talk to other children and make friends, and displayed behaviour such as avoiding eye contact and repeatedly moving my hands.
I was referred to a paediatrician, who diagnosed me with dyspraxia. She also raised, but rejected, the possibility that I had autism, on the grounds that I had a “discrepant profile”. Unfortunately, it appears that the advice at the time was for parents not to tell children with dyspraxia that they’d been diagnosed, based on a belief that they would ‘grow out of it’. My parents would periodically take me for therapy sessions with the paediatrician, which meant practicing stuff like throwing balls with her, but they never explained what was happening, and the therapy sessions stopped when I started secondary school.
I say ‘it appears’ because I’m currently writing a book on my experiences with dyspraxia, and trying to research the condition, but finding more questions than answers. Dyspraxia is broadly defined as a neurodivergent condition affecting physical coordination, but there is no one standard for how to diagnose it, and very little research into what causes it or the best way to treat it.
Dyspraxic people are left with a permanent sense of being emotionally, and frequently literally, off-balance. I live my life as a ghost in a machine, and I feel permanently haunted, too, by all my mistakes, all the times I’ve failed at the things other people take for granted without knowing why. When I read this article by Jenny Hollander I felt such an amazing sense of relief. It’s not a medical description, but it’s a very concrete, specific description of common signs that you’re dyspraxic, and so many things on the list — being clumsy, being unable to learn a physical sequence, being unable to follow maps, even things like not being able to sleep if there’s background noise — describe me. It’s incredible to read these described as symptoms of a disability, not personal flaws.
As a teenager, I was blamed by my parents and teachers and youth leaders and bullied by my peers, because I was terrible at everything — sports, outdoor activities, learning a musical instrument, Maths or IT or DT. Again and again, I tried to concentrate and improve, but I just didn’t — I couldn’t learn these things. It was like moving through fog. I couldn’t will Physical Rosemary to cooperate with me.
I continued to have severe struggles with social skills and fail to make friends. When I was an adult, I was finally diagnosed with autism. When she was being interviewed by the psychologist diagnosing me, my mother mentioned the dyspraxia diagnosis when I was a child, which came as a shock to me.
At the time, the autism diagnosis was a revelation, but as I get older, I think more and more about how dyspraxia has shaped my life. (There is significant overlap between dyspraxia and autism, so I’m not alone in living with both conditions.) I never ‘grew out of’ being clumsy. Huge numbers of things that other people take for granted are a struggle or impossible for me. Living my life in a body that’s hostile to me is a profoundly difficult experience that continues to affect the jobs I can do, the hobbies I can do, how I socialise and how I keep my home.
This isn’t helped by living in a world where most people lack the ability to recognise dyspraxia. According to a 2013 poll, 49% of the British public has never heard of dyspraxia and 70% think that “behavioural, social and learning problems [a]re simply an excuse for naughty or disruptive children”. Even my computer doesn’t recognise it properly — as I write this book, Microsoft Word draws a squiggly red line under each usage of ‘dyspraxic’, although ‘dyspraxia’ is OK.
Dyspraxia is what disability experts call an invisible disability — one that isn’t apparent to the onlooker. In many ways, of course, dyspraxia is an easier disability to live with than many others. But the fact that most people have never heard of it means it’s impossible to explain to people — and that people dismiss someone who’s genuinely struggling with dyspraxia as lazy or annoying.
For example, last summer I went to an outdoor swimming facility near where I live. (I absolutely love swimming — it’s always been the one sport I can do competently, and I love the feeling of escaping into the water.) It turned out, when I got there, that customers had to buy a combination lock from the facility and fit it to one of the lockers to put your things there. Now, I absolutely can’t use combination locks. I just can’t line up the little discs. I tried and tried to fit this lock, and I couldn’t do it. I had to get two separate staff members at the facility to help, and they were both incredibly rude about it.
Another important concept in disability studies is the social model of disability. This is the idea that disabled people are ‘disabled’ because society is constructed in such a way that it fails to accommodate them, not because of any inherent flaw in their body or mind. Someone who uses a wheelchair is only disabled when confronted with a building that’s only accessible by stairs. Likewise, a lot of the problems caused by my dyspraxia are because I live in a society where many objects and activities are inaccessible to me — like a swimming facility where you can’t use the lockers if you can’t operate a combination lock — and people are unwilling to help me access what I need. If we lived in a society with proper understanding of what dyspraxia is, better access to dyspraxia diagnoses for both children and adults, better support for dyspraxic children in schools and accommodations for dyspraxic adults, maybe dyspraxic people could finally feel free, and confident, and access all that life has to offer. Maybe we could stop living as ghosts in the machine.
