The Emma Press

‘This is like me’: On Searching, Representation and Disability

There’s a photo I keep thinking of. I am ten or eleven or so, and I’m sitting on a garden wall. I’m smiling, looking away from the camera.

I’m wearing a red cast on each leg, which locks my foot at a ninety degree angle. In time, I will become self-conscious enough to wear only trousers, but for now I’m still wearing shorts. The casts were called ‘crocs’ but I haven’t the faintest idea why. They were to be worn all day and night. The nights were long. The thick cotton that lined each cast was heavy, sweltering, and very itchy. Ms Hilda Lees, the old lady next door, gave me one of her long, thin wooden knitting needles to stick down the cast. My favourite book then was Boy: Tales of Childhood, Roald Dahl’s first memoir. I read it thirty-four times in a row. I didn’t know of Dahl’s work until I got a free copy of Fantastic Mr. Fox in my Shreddies. If you’d asked me then, I’m not sure I would have been able to tell you why I liked the book so much. Particularly in Boy there’s a mischievous attitude throughout the book that no doubt appealed to my ten year old brain. The adult brain writing this, though, sensed that there was something more in my enjoyment of Boy.

The answer, it turned out, was on page two. Dahl tells a story about his father, Harald Dahl. After falling from a roof while replacing tiles, fourteen year old Harald’s left arm was quickly amputated. Dahl tells us that for the rest of his life, his father made do with one hand. Dahl writes that his father sharpened the bottom end of a fork, so it could be used as a knife. ‘The loss of arm, he used to say, caused him only one serious inconvenience. He found it impossible to cut the top off a boiled egg.’

In this simple, half-page long vignette, I saw something of the practicality that I navigated every day. In hindsight, I can see that I saw something of Ms. Hilda Lee’s too. It was the first time I saw something that resembled my own life in a book. I could only reliably see myself once a year, during Children in Need in November. Mum would point at the screen every now and again and say ‘this kid is like you.’ I said nothing. The only time I had seen myself in a story before was when a doctor handed me a dark blue NHS booklet on ADHD. After pages of facts, figures and FAQs, the booklet told the story of Ollie, in a comic strip that used a clip-art-esque style. The story went like this: Ollie awakens one morning and walks into the kitchen. His mother hands him three tablets to take. Ollie wordlessly takes the tablets with orange juice, his mother ruffles his hair, and that was that. Ollie didn’t speak during the story. He had no hopes, no dreams, no ambitions. He was little more than a receptacle for medication.

Unbeknownst to me, in the same year that I turned ten, Quentin Blake took part in a campaign by Scope called In The Picture. In his trademark squiggly lines, Blake draws a girl sitting on a log, wearing splints like the ones I wore, holding a twig above her head in each hand. In another drawing, a boy in a standing frame holds his arms out. A cat is washing itself by the front right wheel. What might it have meant for ten year old me to know that his favourite illustrator knew people like me existed? What might it have meant to know that my favourite illustrator in the world really saw me?

The In the Picture campaign was directed at the children’s book world, and aimed to find out if disabled children could see themselves in picture books. Unsurprisingly, the findings were dire. In their research report, Scope concluded, ‘There are currently some 770,000 disabled children in the UK who have virtually no role models in literature.’[1] An earlier survey from the summer of 2003 ‘found that 75.7% of parents responding had not been able to find storybooks that contained images of disabled children. And 87.8% had not been able to find an image that their child could identify with.’[2]

In a video that Scope produced for the In the Picture Campaign, school kids in Hounslow and Greenwich were asked to talk about disabled characters in books. One student is holding a copy of Lesley Berrington’s A Day at the Farm and says, ‘I like this book because it shows a girl wearing splints, like me!’ They hug the book to their chest. A boy holds a book open and points to a rectangular illustration of someone in a wheelchair at the beach. He says, ‘This boy has a wheelchair like me.’ A girl looks down and points at the back cover of a book and says, ‘This is like me in my wheelchair.’ She smiles. Another boy holds up a copy of Two Left Feet by Jenny Sullivan & Graham Howells and says ‘This is me!’ More than any other book, Joyce Dunbar and Jane Ray’s Moonbird is held up. One boy says of Orla, the book’s protagonist, ‘he’s the greatest deaf hero.’

Eleven years earlier, Dunbar attended a conference on the representation (or lack therof) of disabled kids in children’s literature. She told the conference, ‘I began to go deaf when I was five years old and my son began to go deaf when he was five years old[…]I looked around for books about deaf children other than ‘Johnnie gets his hearing aid’. That wasn’t going to thrill him at all. There was nothing, nothing at all.’[3] In response, Dunbar wrote 1985’s Mundo and the Weather Child, and D/deaf characters have been a mainstay in Dunbar’s work ever since.

The video ends with the class saying in chorus, ‘we all think there should be more disabled people in books.’ The children in the video could well have children of their own by now. Over fifteen years later, would those kids be able to find themselves in books? Yes and no. Will they be able to find themselves in books if they look hard, and consult experts and librarians? Yes, eventually. Would they be able to find themselves after quickly browsing books at WH Smith’s or Waterstones? Most of the time, no. While there’s undoubtedly more books for disabled kids to find themselves in, the search continues. By far the most common question I am asked after a reading is ‘do you know of any books for my son? For my daughter? For my niece? For my nephew? For my brother’s boy?’

‘We want more books that are like these.’ All the books that the class held up at the end of the video featured disabled people as main characters. More often than not, if I encounter disabled characters in books at all, they’ll often be little more than a wheelchair in the background. They won’t have a name, or a story. Gwendolyn Brooks once wrote, ‘each body has its art’. Yet for disabled kids, it’s an art that is ridiculed, censored and often ignored. To this day, that passing glance, that almost encounter, that almost story is something I come across with grim regularity. Every body belongs in every story. Disabled people are so much more than a wheelchair in the background.

At the same conference where Dunbar derided ‘Johnnie gets his hearing aid’ type books, an eight year old boy asked Michael Rosen, ‘for Michael and anyone else, I absolutely love his books but why does he not love people like me in the stories that he writes?’[4] (It’s worth noting that in the years since then, Rosen’s work has included disabled kids. His most recent book at the time of writing, Sticky McStickstick, is the story of a cane that helped Rosen to walk again after a debilitating bout with covid). Fundamentally, inclusion isn’t about ticking a box or fulfilling a quota. Inclusion is about love, care, and devoted, gentle attention. Right now, parents are scouring the internet and posting on forums to try to find books where their child is represented. A child is standing in front of the book display at the newsagents, scanning the rows of covers for any glimpse of someone like them. Parents, librarians, carers, and most importantly disabled kids and adults are still searching for the books that they can clasp to their chest and read thirty four times in a row. Disabled kids are still searching.

[1] In The Picture Research Summary, P.9

[2] Ibid, P. 18

[3] Invisible Children: Report of the Joint Conference on Children, Images and Disability, 1 March 1995, P.28

[4] Invisible Children Report, P.29

Karl Knights was born in 1996 in Suffolk where he still lives. He describes himself as an ‘autistic writer with ADHD and Cerebral Palsy’, and has written for The Guardian and several journals. He has volunteered for mental health charities and appeared on BBC News in July 2021 discussing the impact of COVID on disabled people who were shielding. Karl's debut pamphlet Kin, won the New Poets' Prize in 2021. Karl has a big following on Twitter where he posts frequently about disability and about poetry –
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