When my first poem was published, the local paper came into my school to take my photograph. ‘Don’t you think you should be wearing gloves in this picture?’ my teacher said. ‘I’ve got some in my bag you could use.’ I was a confident child, but moments like that made me freeze. I was born with a condition called EEC Syndrome, which means many different things but the most noticeable being that I have ectrodactyly (missing fingers) and alopecia (hair loss). I spent my childhood in and out of hospital, having various operations, and I lost myself in books. I inhaled Roald Dahl’s novels and saw myself reflected in the witches (no toes, claw-like hands, no hair) of his work of the same name. In both the book and the 1990 film, the witches hide their ‘claw-like’ hands by wearing gloves. They hide their disfigurements away — the things that would tell the world they are bad people. And, as my English teacher dangled those gloves in front of me, I was reminded that many people would prefer it if I hid myself away, too. I refused to wear the gloves, but it hurt all the same.
As well as The Witches, I also grew up with Scar in The Lion King, Captain Hook, every James Bond villain; comic book villains, horror films — again and again seeing disfigurement and disability used as a lazy marker for evil. It’s an outdated trope that goes back centuries and ties in with religious messages: if you’re good, you can be healed; but if you're bad, you'll be forever disfigured. I remember a woman praying over me one day, saying she would ask Jesus to grow my fingers back, if only I’d behave like a good little girl. For the record: I was a good little girl.
Of course, this has been going on for millennia. Back in the 1500s, a man called Petrus Gonsalvus was put on show in the French courts as an oddity, as he was born with hypertrichosis, which is where hair grows all over your body. He was then sold to Catherine de Medici, who married him off to her friend Lady Catherine as an experiment to see what would happen when ‘beauty and beast’ came together - one of the main inspirations for the fairy tale Beauty and the Beast. Though of course, in that version Beast becomes a ‘beast’ because he acts in a way that is deemed heartless, but he’s turned back into a ‘handsome’ prince when he wins the love of Belle. Again this suggests that disfigurements are associated with bad behaviour, and if you change your personality you will somehow change your body.
We’ve come far since then, of course, but not far enough. Whilst we’ve mostly dispensed with freak shows and blatant exploitation, let me ask you to think about the romanticisation of PT Barnum in The Greatest Showman. Let me also highlight TV shows such as Too Ugly For Love?, a company that emailed me a few years ago, asking me to be a participant, because of course I must be single if I have a disfigurement. I’m married, but that’s beside the point. TV shows like that, who hunt down disabled people online, claiming to have their best interests at heart, are both manipulative and patronising. Which is why it’s disheartening that the literary and cinematic trope of ‘disfigurement = evil’ is still used all the time. Changing Faces launched a campaign a couple of years ago called I Am Not Your Villain urging film companies to think more critically about the messages they send out into the world, and the real-life consequences of their actions. Alas, it keeps happening.
Last week, the new adaptation of The Witches was released, and more disfigurements have been added. This time the witches actually have ectrodactyly — the condition I have— rather than simply ‘claw-like’ hands. Anne Hathaway and Warner Bros. posted an Instagram video reminding people of the signs of witches, telling children to look out for them in the world because #WitchesAreReal. They wear long gloves, because they’re missing fingers; they wear wigs because they have no hair.
I’m not going to lie to you: fighting these stereotypes is emotionally exhausting. I am sad, and I am tired. You may have a knee-jerk reaction of: ‘but these are just films!’ So, I say to you, calmly: they are not just films. They do not exist in a vacuum. They feed into our society, they fuel people’s assumptions, and I’ve witnessed the results of that all through my life. Disabled people and people with disfigurements everywhere have witnessed this, too. Please listen to us. We can and should do better.