Disability has been written into books throughout history – but why are disabled characters either ‘helpless’ or ‘a hero’, and not just ‘normal?’
Sitting in his wheelchair looking out into the expansive garden which surrounds his home, Will contemplates taking his own life. He cannot move from the neck down, unable to brush a hair on his head or wipe a tear from his cheek, living in the shadow of his former life, looked after by his carer Lou who he just about tolerates.
But underneath his hardened exterior are the feelings and emotions which make him human: he can still fall madly in love, burst into raging anger, break down into a puddle of tears or laugh until the breath catches in his throat. Just because he is disabled it doesn’t mean his life is anything but ‘ordinary.’
What is often forgotten in the creation of characters’ such as Will in Jojo Moyes’ Me Before You is that characters with disabilities are more than their disability.
Moyes’ book is a tale of unexpected love between two people who couldn’t be more different, but despite Lou and Will’s love for each other, Will lost a piece of himself the day he was paralysed. At the end of the book, he decides to undergo euthanasia in Switzerland. Although this may be the experience of some, this representation can perpetuate that life with a disability is not worth living.
India Oates, a University student who has cerebral palsy, explained that growing up she didn’t feel represented in literature because she never read a book featuring disabled characters: “It made me feel isolated.
“Reflecting on it now I probably felt a lack of representation and I couldn’t see myself in society because I wasn’t reading it in books. It can make you feel like there isn’t a place for you to thrive.
“My experience is just like anyone else’s experience in life. You will have challenges and people will face obstacles which they find hard, regardless of whether they have a disability or not.”
As far back as 1843 the ‘tragedy trope’ of the ‘helpless’ or the ‘hero’ has been associated with disability in literature. Family favourite A Christmas Carol used the novel’s hero Tiny Tim to awaken Scrooge from his icy slumber. In Herman Melville’s Moby-Dick captain Ahab is described as a helpless “retarded child” and Samuel Beckett’s novel, Molloy, describes the protagonist as a defenceless cripple whose legs are “as stiff as a life-sentence.”
- An estimated 14.6 million people in the UK had a disability in 2020/21. That’s 22% of the population.
- According to a 2019 study by the Cooperative Children’s Book Center’s only 3.4% of children’s books have disabled main characters.
- A 2019 Publishers Association survey found only 6.6% of the workforce identified as disabled.
- Since 2002/2003, the number of people reporting a disability has grown by 35% – that’s 3.5 million people.
Within children’s literature, helplessness is represented through the “hideously deformed” Hunchback of Notre Dame who is incapable of receiving love. And whilst there is an element of fiction which needs to be imaginative and exaggerated, whether it be a miracle cure or a sudden change of fate, most disabled people live with the knowledge that disability has no end.
Cat Mitchell, a lecturer at the University of Derby and specialist in disability literature, acquired a disability in her second year of university and has spent much of her career researching disability in publishing:
“In disability narratives you’ve got to have some sort of ending, some sort of resolution, and disability doesn’t often fit into those niches or narrative structures and the resolution is often a tragedy.
“I think it’s saying something about who they think the audience of those books are. It’s the idea that this content is being produced for the abled gaze.”
Cat’s research expands to investigate the representation of disability within the publishing industry, and how that has an impact on which books are green-lit:
“It’s not the number of people in that demographic working in that job, it’s how they are being supported. You’ve got loads of disabled people working in publishing – great – but are they supported or able to do their best work? In my research the answer to that was no.”
In some respects, the hardest element of writing a book for someone with a disability is getting it published. In circles where publishers don’t view disability as representing their reader, harmful narratives such as ‘Inspiration Porn’ are able to be filtered into the public domain.
Inspiration Porn, first coined by Australian disability activist Stella Young, intertwines sentimentality and pity into an uplifting message of disability aimed at an able-bodied audience. The outcome of this is often very simple: to make able-bodied people feel better about themselves because they don’t have a disability holding them back.
According to Rosemary Richings, a disabled author who has dyspraxia, Inspiration Porn is the by-product of a lack of disabled input:
“The books too often go back to the ‘Inspiration Porn’ angle and there’s a mindset in the market on what a disabled perspective looks like and not enough dialogue or education about that.
“That leads to a bias about what people think will sell and that’s a big part of the problem. If there’s more openness, then more of a three-dimensional-ness will happen.”
But things are slowly getting better. With input from the disabled community, education, and the willingness to be open to alternative stories, disability narratives can thrive. The likes of The Curious Incident of the Dog by Mark Haddon, El Deafo by Cece Bell and Elle McNicoll’s ‘A Kind of Spark,’ are just a few positive examples.
‘A Kind of Spark’ is a children’s book centred around an eleven-year-old girl with autism. McNicoll, who has dyspraxia herself, acknowledges the presence of disability without using it as the hook of her storyline, writing in a style which doesn’t demand a reason for disability. The book’s success has led to it being adapted into a BBC series, throwing neurodiversity into the spotlight, and giving autistic actors the opportunity to showcase their talents.
Amie M Marie, a performer and writer who lives with multiple chronic conditions, says that characters with disabilities can add something different to a fictional narrative:
“I believe that disability adds texture to stories – as a creator, it is an incredibly, innately impactful lens through which characters that are disabled, or go on to acquire disabilities, experience the world and it affects their world.
“In the same way that humans are naturally varied and diverse, characters can be disabled and not serve a narrative function. Disability can mean characters see the truth of a situation, have unique solutions, or have a different reaction to any non-disabled characters.”
Fictional characters may just be a collection of words on a page, but words hold meaning. The idea that disabled characters are either the ‘helpless’ or the ‘hero’ in a story is a trope that often misrepresents the disabled community, turning them into a narrative structure to benefit the able-bodied reader.
Diversity, inclusion, and education surrounding disability will always be important to showcase in literature. But that doesn’t have to be represented through a ‘helpless’ or ‘hero’ character. Ordinary is powerful too.
If you like this article then read Should books with racial slurs be taught in schools? or Why books need Black female leads, and five novels that do it well next.