Time and time again, a distortion that is not us appears in the mirror. We need our own voices
Mon 25 Feb 2019 09.00 GMT
Last modified on Mon 25 Feb 2019 09.31 GMT
You’re aged 10 and you’ve never seen anyone like you. You do your best to hide the fact that you’re disabled, taking care to never wear shorts and seeking out boot-cut trousers to slide over your calliper. You think you’ll grow out of your disability, get through it like a growth spurt. When that doesn’t happen you’re devastated. The smell of a hospital is enough to send you into a frenzy of shame. You are 12 and unsure why people on the street – adults, the elderly, fellow children – stare at you so intently. You don’t know why you’re so angry when they stare. The odd few brave enough to come up and ask you about your disability make you writhe and squirm with despair.
In your late teens you come across a book by a writer named Christy Brown. It’s the first time you’ve seen the words “cerebral palsy” outside of hospital waiting rooms and doctor’s appointments. It scares you. You don’t read the book for years. When you’re an adult you come across a song called Spasticus Autisticus. You love it more than you’ve ever loved anything. You murmur the chorus to yourself like a hymn. A new feeling starts surging in your veins. You read John Callahan, Vassar Miller and Larry Eigner. You feel a thrill you’ve never felt before. You’re finding a history you didn’t know you had. You begin to know that your culture has been lying to you. You start saying disabled is beautiful. You’ve become yourself.
Such a journey, in almost total isolation, shouldn’t be the norm. A disabled person shouldn’t have to hunt for their history and excavate it like long-lost dinosaur bones. A disabled person should see themselves, from the minute they’re born to the moment they die, which is why the news of disabled emojis being approved for use is so exciting. The new emojis include wheelchairs, hearing aids, prosthetic limbs, guide dogs and more. Encouragingly, Apple consulted disabled organisations such as the American Council of the Blind. Is the phrase used in disability activism – “nothing about us without us” – beginning to sink in?
Barbie, which has more influence than we dare imagine, is also showcasing disability, front and centre, unapologetically. Barbie will debut two dolls, one featuring a prosthetic leg and another in a wheelchair, in June. A ramp, to make Barbie’s Dreamhouse accessible, is included. Barbie’s manufacturer Mattel commented that a wheelchair has been among the most frequently requested accessories for the doll.
Emojis and Barbie dolls may not sound like much to you, but representation, whether it comes via books and films or emojis and Barbie dolls, is immensely powerful. If I had even something as simple as an emoji representing myself as a kid, I wouldn’t have felt so isolated. Representation isn’t an abstract concept; children (and adults) feel accepted and wanted when they see themselves. Even today, if I see myself in my culture in any way, whether it’s films, books or on the street, I feel a visceral thrill. I can only imagine how my adolescent self would have reacted to seeing himself.
Having disabled emojis and dolls is an important first step in ensuring that disability is a part of our everyday conversation. Emojis and dolls are the punctuation of our lives, we all use them or are at least aware of them. By taking first steps towards representation, we can ensure that future generations of disabled children and adults don’t feel so isolated, frightened and uneasy. No one should have to go through the isolation of seeing nothing in the mirror. We can ensure that disabled children can look in the mirror and say: “Disabled is beautiful, I am disabled. What of it?”.
More than one billion people worldwide are disabled, yet our representations of that wealth of experience are painfully inept. My Left Foot, which turns 30 this week, remains the single most well-known depiction of cerebral palsy on screen. The film does no justice to Christy Brown, the novelist who changed my world. Brown is reduced from a towering writer to inspiration porn. Bryan Cranston “cripped up” to play a paralysed man in The Upside. Writers and producers saw nothing wrong in portraying an autistic person as a literal prop, a grey-faced, hollow-eyed puppet. Time and time again, a distortion appears in the mirror rather than our reflection. We need our own voices in culture; our own Netflix shows, plays, movies and books. We need our own good disabled characters and bad ones and mediocre ones. We need disabled public figures and celebrities. We need emojis and Barbie dolls. We all deserve to be seen.
• Karl Knights is a writer focusing on representation, disability and culture