We are an overwhelmingly ableist society — we see disability or neuro-divergence as a lack or absence that makes an individual ‘inferior’ and keeps them from having a fulfilling life as defined by mainstream values. Plus, most of us still tend to use problematic terminology in referring to disability, and there is almost zero integration or accessibility in public spaces, mainstream schools, and higher-education institutions. We have internalised ableism as the norm, disability as a ‘deviation.’ And, of course, it seeps into the stories we tell our children.
Funnily enough, these are interesting times to be a children’s author in India. Between 2006, when my first book was published, and today, the industry has undergone a drastic transformation. Back then, publishers approached what we still quaintly call ‘difficult subjects’ with trepidation, whereas now a wide variety of such ‘difficulties’ are par for the course, from picture books to young-adult novels.
This diversity is not to be scoffed at, of course, but in celebrating it we end up ignoring a critical question: who is telling the stories and who are they speaking to?
The answer is discomfiting: our storytellers are overwhelmingly privileged and, I’m sorry to say (because I am part of the problem, as a non-disabled and socio-economically advantaged person), the bias is showing. Yet nobody wants to talk about it. And this is just English-language publishing.
In terms of disability, historically, books have been cruel to disabled and neuro-divergent children (neuro-divergent or neuro-atypical refers to having a brain that functions differently from dominant, accepted social standards of ‘normal’, for example, living with dyslexia and being on the autism spectrum).
Not only have these children rarely been represented in literature, when they have, they have been portrayed as ‘deviants’, and their stories, almost without exception, about the struggle to fit into an ableist world. In fact, back in 2015, which is really not all that long ago, the children’s author Susie Day wrote a piece for the Guardian on disability in children’s literature, saying,
‘In classic children’s fiction, physical disability tends to be co-opted not only as a cautionary tale, but a completely useless one where it turns out you’ll be ok in the end — so long as you’re nice, or you try hard.’ She cites Colin in The Secret Garden and Katy in What Katy Did as examples. She adds, ‘I’d love to say that children’s fiction has taken a…leap since [then], but I can’t.’
With children’s publishing in India — from books for babies to books for young adults — beginning to come into its own, this ableism is starting to be represented here as well, and is often misconstrued as inclusivity. (This misrepresented inclusivity is not limited to disability, of course, but we limit ourselves to it here.)
Books placing disabled and neuro-divergent protagonists front and centre are rare. Numerous other ‘others’ face this invisibility as well, for example, gay and lesbian youngsters, gender-questioning children, protagonists from marginalised caste and class backgrounds, and so on.
A vast majority of the literature landscape is being shaped by non-disabled, neuro-typical authors rooted in the mainstream. This means whatever representation there is comes from that ableist, allistic perspective. Having said that, given the lack of awareness and sensibilities related to disability in our culture, it would be unfair to lump the entire burden of blame on authors, editors and publishers. But they do have to shoulder some of it.
Let’s consider a couple of recent examples that, despite their ableist contexts, have received acclaim.
In one chapter book, a child with a lisp faces derision from her peer group as well as from some adults. She is exhorted to seek therapy to ‘normalise’ her speech, or at least to reduce her lisp. Traumatised with the constant bullying, she decides to stop talking. Her best friend convinces her that her stand is not reasonable. Ultimately, she agrees to speech therapy. Those who bullied her face no consequences.
Another book is about an autistic child (though autism is not actually mentioned). He comes across as mostly non-verbal, but communicates in other ways. He likes to draw and has a particular affinity to cats, which he draws again and again. His brother makes a kite from one of his drawings that they fly together. Soon, a special school is found for the autistic child, and the story ends with him not only speaking in full sentences, but he even lets his cat-kite go free, watching as the wind carries it away.
Neither of these are bad books, but they are narrow-minded in depicting disability. The protagonists’ disability and neuro-divergence are portrayed from what the mainstream perceives as ‘normal’ — the girl must tailor her speech to match ‘regular’ speech to avoid the bullying, while the boy must learn to communicate ‘properly’ and learn to let go of what in autism circles would be called his special interest. In both cases the reader is never in the shoes of the protagonist; they are only present as an observer.
These perspectives are further reinforced by there being no consequences for bullies in the first story because they are the norm, and the little girl not being allowed her rebellion since her stand is seen as illogical. In the second story, letting go of his kite could be symbolic of him being ‘set free’ from his autism — and we’d need a whole new article to talk about the deep problems with that approach.
Authors, editors and publishers must do better. Visibility is not enough — we have achieved visibility — what we need is actual, tangible representation. Visibility is about being seen; representation is being given the stage and the choice of story to tell.
‘Representation is very much about stories: the stories we tell about ourselves, and the stories we tell about others, and which of those stories we choose to tell,’ says a blog on the difference between representation and visibility. The author is a former journalist, writing about LGBTQ+ representation on television shows. A different medium and a different kind of inclusion, but the fundamental distinction remains: representation cannot exist without visibility, but visibility does not automatically mean representation.
When it comes to storytelling, it matters a lot on who’s doing the telling and who’s doing the listening. There is a movement in the publishing world called #ownVoices — ‘books about diverse characters written by authors from the same diverse identity.’ (One uses the term ‘diverse’ with caution here, since it assumes a neutral or normal point of view, which is the mainstream one.)
While I have no #ownVoices expertise to bring to the table in terms of disability, I can certainly extrapolate from my other identities. To begin with, wherever possible, defer to the disabled author, let them take centre stage and lead the way. That’s how we get brilliant, heartbreaking books like Sally Gardner’s Maggot Moon, a dystopian science-fiction novel with a protagonist who lives with dyslexia.
In India we have yet to acknowledge the #ownVoices movement in children’s literature, and this needs to be rectified quickly — but without putting pressure on disabled authors to write about disability. Ableism poses barriers to disabled authors that non-disabled ones don’t encounter — including the internalised or benevolent prejudices of the non-disabled — and the first step is acknowledging them.
Of course, any conversation on #ownVoices results in a clamour of (usually otherwise privileged) authors arguing for their right to write about anyone. That, though, isn’t the issue. The issue is simply the context alluded to earlier — who is telling the story and who are they telling it to?
In other words, the protagonist, irrespective of the author, must have a real, active voice.
They must get to define themselves and take up space in the story (and the world) as themselves — not as how non-disabled people see them. And how can non-disabled, allistic authors ensure this? Easy: background research, whatever that might entail. At the very least, acknowledge the need for unlearning reductive theories about disability, and focus instead on how to imagine flexible, inclusive, elastic worlds in stories so that they may be reproduced in real life.
Finally, the stories about disabled and neuro-atypical characters can go beyond heroism and suffering. So send them on a perilous journey, throw them a juicy mystery to solve, make their significant others dump them, have carnivorous plants eat their parents, make aliens attack their planet… Not every story has to be about their so-called differences, it can be about so many other things instead. There are some fantastic resources, including book recommendations, available online.
As an author, do the hard work and make your mistakes. Trip over your own inflated sense of self, then get up and move on. It makes you a better writer — I know from having had to set my nose back in joint more than once.
Payal Dhar is a freelance writer on technology and culture, and an author of middle-grade and young-adult fiction. To find out more about her books, visit payaldhar.com.
(Not accessible? Try our Wordpress page.)