The Ethical Responsibility of Representing Disability in Children’s Literature

By Anna Purkiss

Think of ‘disability in children’s literature’ and which books immediately come to mind? For many people, these would be classics such as The Secret Garden by Frances Hodgson Burnett (1910), Pollyanna by Eleanor H. Porter (1913) and What Katy Did by Susan Coolidge (1872). Over the past fifteen years, alongside increasing awareness of and activism around disability, there has been a surge in the publication of children’s and young adult books with disabled protagonists and other disabled characters. Today’s young readers may think more readily of The Curious Incident of the Dog in the Night Time by Mark Haddon (2003) or even Jacqueline Wilson’s retelling of Coolidge’s original, Katy (2015). However, many representations of disability in children’s literature are problematic, which can have consequences when texts are popular and so reach a wide audience. As the representation of disability in children’s literature and the representation of participants in empirical research carry some similar ramifications, I will therefore be reflecting on my own research practice alongside my consideration of the ethical responsibility of children’s authors; the main focus of this piece.

The way disability is represented in children’s literature has the potential to affect non-disabled young readers’ views of disabled people in real life and also to reflect disabled readers’ lived experiences back to them from the page; a vitally important purpose in a publishing landscape where the majority of characters are non-disabled. Therefore, incorrect and stereotypical representations that portray disabled characters as objects of pity who have a deficit, for example, have the potential to do real harm to disabled people. This can be both through the attitudes of readers who have absorbed these views and the harm disabled readers may experience when reading problematic representations of their own lived experience. This means that authors have an important ethical responsibility when including disability in their writing to create well-rounded, accurate and authentic disabled characters, in a similar way to the ethical responsibility I carry as an empirical researcher to authentically represent my participants and their experiences.

In the ‘Reading the Way’ report by Outside in World, authenticity in the context of disabled characters is defined as ‘whereby accuracy is complemented by a personality that is not defined by disability’. This is in line with the recent Centre for Literacy in Primary Education (CLPE) ‘Reflecting Realities’ report; a comprehensive study of the representation of ethnic minorities in UK children’s publishing whose recommendations emphasise, among other things, the importance of authentic representations. While alterities are not interchangeable, many of CLPE’s recommendations could certainly also apply to representations of disability.

Although examining problematic representations of disability in children’s literature is important, for this blog I would like to take a more positive view. I have read a wide range of books with disabled characters for my PhD research, but I have not yet found a better representation of disability than She Is Not Invisible by Marcus Sedgwick (2013). This young adult (YA) novel is a thriller which tells the story of Laureth, a blind sixteen-year-old girl who, accompanied by her younger brother Benjamin and his toy crow Stan, embarks on a transatlantic adventure from London to New York to find their missing father. Laureth tries to ‘pass’ as sighted to avoid being prevented from travelling but faces a variety of unforeseen obstacles in her quest. Sedgwick also explores ideas of family, identity and the concepts of hope, faith, coincidence and obsession (these four words taken from the original hardback cover art).

Part of the success of this representation of disability is that Laureth’s blindness is just one part of her character and the story; it is not the focus of it. Indeed, we do not find out until page 54 that Laureth is blind – a moment of intense cognitive dissonance where the reader re-evaluates everything they have read up until that point. Although Laureth’s blindness is one aspect of She Is Not Invisible, this is not what drives the narrative but rather her quest to find her missing father. 

She Is Not Invisible also reflects the complex realities of the lived experience of blindness and visual impairment. For example, Sedgwick’s description from Laureth’s point of view relies entirely on senses other than sight (mainly sound and touch), giving the reader a glimpse into the way Laureth experiences the world. This is subtle but very effective as it starkly contrasts with the sight-centred description more usually found in literature. Sedgwick also refers to environmental barriers that arise from our ocularcentric world and accommodations that can remove them, such as the British monetary system having different sized notes for different amounts. Furthermore, Laureth encounters varying attitudes regarding her disability, from Michael’s automatic acceptance to the airport employee’s ignorance and rudeness. All of this combines to create an authentic representation as, to return to the definition from the ‘Reading the Way’ report, Sedgwick’s accuracy enhances Laureth’s character, which is certainly not defined by disability.

This can be attributed to the meticulous research that Sedgwick engaged in when writing the book. He made several trips over the course of two years to New College Worcester, where he spent time and talked at length with blind and visually impaired students studying and living there to find out how Laureth would experience the world.  This is not to say that the portrayal of Laureth is representative of all blind or visually impaired teenagers – disability is not a homogenous experience – but, as Holly Scott-Gardner, a blind reviewer on the website Disability in Kidlit, says, ‘Just because I didn’t identify with Laureth…doesn’t mean Sedgwick has failed. In fact, I think he achieved more than many other authors’, also citing his research process as the book’s strongest feature. Reflecting on my own empirical research, working with children with various experiences of disability, it strikes me that Sedgwick’s research practice can be an inspiration for any researcher attempting to do justice to the lived experiences of those they have worked with and are representing. It also highlights the importance of looking across academic boundaries to find solutions and connections for our own areas of research.

This respect for the experiences and views of young people with the same disability as his protagonist indicates Sedgwick’s commitment to his ethical responsibility as an author, particularly as he is not writing from an #ownvoices perspective himself. Another example of this commitment is the way in which She Is Not Invisible was disseminated: the book was published simultaneously in hardback, eBook, audiobook, large print, Braille and DAISY (digital talking books). This was a very conscious decision by the author, as chronicled on his website.

Marcus Sedgwick’s work in She Is Not Invisible demonstrates the importance and effect of his respect for both real people with his protagonist’s disability and his potential audience. When writing a disabled character in a children’s or YA book, authors’ words carry enormous potential for harm and for good, not just in the fictional worlds they create but in the very real world that their readers inhabit. It is their ethical responsibility to take this seriously, and in doing so, improve the representations of disability that our children and teenagers read. Similarly, as researchers, we have a responsibility to our participants, who we represent, and also to those whose lives may be impacted by our findings.

Anna Purkiss is a PhD researcher at the Faculty of Education, University of Cambridge. Her research explores the responses of a group of 12- and 13-year-olds to the representation of disability in three contemporary texts. A former primary school teacher, Anna is a member of the Centre for Research in Children’s Literature at Cambridge and the Cambridge Network for Disability and Education Research. Anna tweets @AnnaPurkiss 

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