There are a number of issues which I, as a children's writer find difficult to deal with one of which is disability. This is a controversial subject about which people feel passionate, angry even. Most of us children's writers are well meaning and would never want to offend or distress our readers, nor would we want any of them to feel excluded or uncomfortable in the worlds we create.
In order to gain insights into the pitfalls we could encounter when writing about disability and how to avoid them, Jen Campbell has kindly agreed to respond to my questions. Jen is one of the most eloquent, warm and inspiring people you could ever meet. She regularly produces videos in which as well as talking about her passion for books and fairy tales, she speaks openly about her disabilities. She also publishes poetry, short stories and children''s books including those about the bibliophile dragon Franklin and his Flying Bookshop and she has just published The Sister who Ate Her Brothers & Other Gruesome Tales which I hope to review here in the future.
Jen has EEC, a rare condition which manifests itself most visibly in her missing fingers, but also involves hair loss and affects her eyes, jaw, teeth and internal organs. Since the age of 3 months she has undergone dozens of operations.
P.C-P Jen, I want to ask you on behalf of other children's writers, for any advice you can offer on the representation of disabled people in children's books. As a child I imagine you were a keen reader. Are there any books which stick in your mind as having been particularly helpful/unhelpful to you at this stage?
J.C I don't remember ever seeing myself represented in a book as a child; though I do have a very rare condition so that's probably understandable enough! However I have certainly seen elements of my disability used as metaphors in texts - disability is often used as a marker for villainy, or bodily transformation can be used as a punishment. This is a device which goes back to even before Biblical times, is tied up in religious messages, definitely had its heyday in Victorian literature but is still everywhere in modern day literature and cinema.
Growing up I saw this extensively in Disney films and children's books: bad guys with disfigurements in novels, crime books and horror that used the same tropes. But disabled people aren't metaphors; we are people. If disabled characters did crop up in anti-villainous ways in the books I read as a child, it was often presented in a way that should be pitied, or as 'inspirational porn.' I certainly didn't read any well-rounded disabled characters, which was not only a shame but also harmful.
Extensive research has been done into the effects of media on public perception of disability, so the argument is not whether the disfigurement-villainy trope (which is so pervasive) affects the way society in general treats people with disfigurements and disabilities - that's the point that's already been proven several times over by those in the field. The argument is whether the industry is willing to change. I've written about this in several places/Here's my most recent article which delves into the history of James Bond and the wider use of this trope across media as a whole.
P.C-P Since your childhood, as an adult and a writer, have you come across books which you find deal with this topic well/badly?
J.C. I have a video here which recommends excellent books that centre disabled stories
so I've definitely read more positive representation of disability as an adult; though there are still many books by non-disabled authors which do not handle disabled topics well yet are heavily praised outside of disability circles. Firegirl by Tony Abbot would be a case in point. This is a book that's on the school syllabus in Canada and has won many awards, but the story is about a boy who is scared of a new girl in his class called Jessica, who has burns scars. The plot follows this boy as he tries to 'get over' his fear, and eventually holds her hand. This gains him the respect of the 'pretty girl' in class who he has a crush on and this is his reward. The main way he 'gets over' 'his fear is by seeing a photo of her before she was burned which essentially allows him to 'identify with her as a person.' I am using all the air quotes here because of course these sentiments are infuriating. We never hear from Jessica's perspective; her disability is a plot point for the betterment of the main character, and a lot of the text is dedicated to how 'grossed out' the main character is by her appearance.
So many stories about disability claim to be about promoting acceptance but end up massively othering disabled characters, and therefore disabled people in the process. It is hard to write about here because in doing so I'm imagining many people defensively disagreeing, arguing that nondisabled children need to be taught about bodily difference so that they can apply kindness to their everyday life. I don't necessarily disagree with that, but there are ways of going about this, and its a shame that the majority of books about are for non disabled people; disabled children don't need to learn that lesson, but it's some of the only representation we have, and none of these stories are our own. I would argue that Own Voices books that centre on disabled characters, such as Elle McNicol's wonderful Show us Who You Are and incidental representation of disability to reflect the world we live in, are much better ways to go about this than questionable moral tales.
P.C-P So how can we be more inclusive in mainstream children's books? More especially in picture books?
J.C By listening to disabled creatives, uplifting disabled writers and Own Voices Books and by reflecting the world we live in in the stories we write. Disability shouldn't be used as a metaphor.
P.C-P In your Franklin the Dragon's Flying Bookshop books you do include a boy in a wheelchair amongst the background characters depicted. Did you suggest this to your editor?
P.C-P Because a wheelchair is used as a sort of shorthand for disability I have heard that this is considered a bit of a cliché. What do you think?
J.C I don't think there's a simple answer to this question because every book and every writer is different. Part of my job now is talking to publishers about how disability and disfigurement is represented in the books they publish. I also provide editorial services for writers; this is primarily for plot, character development and writing style but it can be about discussing these things too. I am not pushing tokenism in books written by non disabled authors; I'm simply asking everyone to think more critically about the worlds they present to children ( and adults!) when it comes to disability.
P.C-P Jen, you are remarkably open about your condition in your videos which I know are a comfort to many viewers. But what about children? Children are notoriously curious and have fewer inhibitions than adults. Did you find children asked you a lot of questions and how did you feel about answering them?
J.C I worked as a children's bookseller for ten years, and so I was constantly asked questions by curious children. I still am asked questions when I go into schools and bookshops to do readings. I understand that, and I obviously want to nurture an understanding of disability. However I make it part of my talk to discuss the implications of asking someone what's 'wrong' with them. Curiosity in children is good, but nurturing an understanding of disability doesn't mean that you need to be privy to someone's medical history. If we had better representation in the media this would be less of an issue .
P.C-P So in the case of a book where the main protagonist is disabled or the disability is central to the book, do you think the 'Own Voice' approach is best?
J.C I absolutely do, yes. There are so many reasons why, and I know this response can spark outrage from some people who are determined to point out that fiction means a made-up world, so anyone should be able to writ e about anything. In a perfect world, I would agree, But the point is that we don't live in one of those, so please be patient and sit with me on this topic. Disabled people are the most under represented group in publishing. It is all about nuance. Disabled writers understand ableism; its not about the medical model of disability, it's about how the world treats us. It's the societal model of disability that needs to be reflected more in books, and that's something disabled writers are brilliant at. That is what brings books on these topics to life in a very specific way. Moreover, I've been working in the publishing industry for fifteen years now and time and time againI have seen publishers choose books by nondisabled writers over Own Voices disabled stories, not because the the story they have chosen is better, but because they identify with a nondisabled approach more, and they feel more comfortable talking with nondisabled authors about disability topics. It's a causal loop: disability makes some non disabled people feel uncomfortable; if they don't have lived experience of it, they have no extensive media to counteract this; they therefore don't want to talk with disabled people about disability, they then support work written by nondisabled people because that is what they are most familiar with. And repeat. I have done some sensitivity reading with nondisabled authors and I think sometimes that's appropriate (as I said every book and author is different) but as a general rule, I would ask publishers to pay more attention to Own Voices work. However, I'm speaking to writers here. It is not the job of nondisabled writers to fix the publishing industry. That's on publishers (though we appreciate your support on this issue.) For nondisabled writers, I would request thoughtful incidental representation of disabled characters in your stories, I would request that disability is not used as a metaphor, or marker for villainy, pity or as 'inspiration.' Write with us in mind (because we are part of this world) but please don't write for us, or over us.
P.C-P Thank you Jen for giving us so much to think about and so many really valuable insights into this tricky issue.
Patricia Cleveland-Peck
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4 comments:
May I say here that, as another person with a disability, I agree with Jen. If anyone reading this knows "Let the balloon go" by Ivan Southall (it's "old" now - 1968) then it might be worth saying that Ivan did not write this until he spent a long time asking me questions, questions he might have asked his intellectually disabled daughter if she had been able to answer them. He always said this book, a book about a boy with cerebral palsy who climbs a tree, was the hardest one to write apart from his book "Josh". He acknowledged that his agent was uncomfortable with the topic too.
I later wrote a book for a young friend which includes a child with a disability similar to mine but it is told from the point of view of her brother. It has never been published and was rejected on the grounds of being "too realistic", "confusing" and more. It probably was never going to be good enough but I also suspect that those I submitted it to also found the characters uncomfortable.
It's not easy to challenge people and educate them at the same time.
Really interesting and important. Thank you.
What a great post, Patricia! Grateful thanks to you and Jen.
Thanks catdownnunder,Pippa and Lynne
As someone new to this it is great to have your feedback
patricia
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