This isn’t a book review as such, in truth, it’s an essay I wrote for coursework but there are elements of it that read like a book review. So I have decided to post it here as part of Berg’s Book Club with some edits.
This essay/book review talks about the writer’s responsibility when representing disabled characters. The books mentioned have been reviewed by me previously. They are Good Kings Bad Kings by Susan Nussbaum, Amy and Matthew by Cammie McGovern and Katy by Jaqueline Wilson.
Bare with me, it will be worth it, trust me.
Trigger Warning: Rape and Abuse in Good Kings Bad Kings section.
We have always told stories. Whether that is through the paintings we drew in caves, oral tales and poems from our adventures of war or through the pieces of paper bound together in what we call a “book”. Many say we have looked at and produced stories or creations of art to make sense of the world; attempting to solve the universal issues faced every day:
We can tell stories to explain things from a child’s or country’s pouty “They started it” to why the world is the way it is, according to myth or science (Boyd, 2009, p. 1).
Fiction has the potential to influence and change how a community or group is viewed and treated within a society. If a disabled character is depicted negatively throughout fiction, then we, as a society, are going to see disability as an undesirable aspect of life:
Fiction can affect the way real people are treated. (Dunn, 2015, p. 1)
Victorian England, along with previous eras, constructed an undesirable image of the disabled. One reason for this is because books were used to mould children into perfect citizens:
In the 19th century, books for children were commonly written for instructive or moral purposes (Dunn, 2015, p. 6).
Disabled characters were used to emphasise the moral message in the nineteenth-century and subsequently, the protagonists usually faced two significant endings: either they were cured as a reward for their improved behaviour, or they died:
…resolve the problem of their character’s inability to walk: Cure or Death (Keith, 2001, p. 5)
The last decade has seen an increase of Young Adult fiction illustrating and representing a range of disabilities:
…the last ten years have seen an uptick in high-quality YA novels centering on disability (Dunn, 2015, p. 4).
Katy by Jacqueline Wilson, Good Kings, Bad Kings by Susan Nussbaum and Amy and Matthew by Cammie McGovern are three contemporary teen and young adult novels which contain disabled protagonists.
By examining these books, we can explore how the writers have responded to the responsibility of representing disability. Whether they have managed to represent the community in a realistic way or whether they have fallen on the common stereotypes discussed in Nussbaum’s article. Some of these stereotypes include:
Katy by Jaqueline Wilson
Katy is a story based on What Katy Did by Susan Coolidge As a result, we need to understand Coolidge’s book to perceive Wilson’s agenda to illustrate her disapproval of the message Coolidge gives children. Both the stereotypical roles of women and the unrealistic message about disability.
Katy in What Katy Did is initially portrayed as a boisterous and disobedient child, the oldest of six children, and careless. She uses the family swing after her Aunt Izzie forbids it. Consequently, Katy falls off the swing and has a disabling injury. She is bed-ridden and trapped in her room until her good behaviour and religious fortitude enables her to walk again. It is a story aimed at modelling girls into well-behaved citizens and could be argued that the book has a moralistic bias, similar to some books having a political bias (Orwell, 2004, p. 5).
However, it is important to remember that Katy and What Katy Did were written in different eras with almost 150 years between them. Therefore, what was regarded as socially acceptable in Coolidge’s day, is no longer tolerated today:
…people modify their language every generation, the extent of these changes is slight (Pinker, 1994, p. 246).
Although Jacqueline Wilson loved What Katy Did as a child, she now finds the novel disturbing and concerning (Griffiths, 2015). Wilson challenges that the unrealistic message of children’s problems solved through good deeds gives the wrong message about disability:
… dishonest for children in wheelchairs, who probably know … if they have a spinal injury, they are unlikely to walk again (Griffiths, 2015).
Wilson felt the responsibility to rewrite Katy’s tale. The plot is the same but with key differences; the eponymous protagonist is not forbidden from using the outdoor swing, instead, her naughty behaviour is punished with discipline, not with a tragedy. The incident she has because of the swing could have happened whether she was naughty or not.
And don’t think you’re going swimming this afternoon. You can stay at home in disgrace by yourself (Katy, Wilson, 2015, p. 209).
These key differences allow Wilson to develop Katy into a believable character; Katy’s arc is not learning to be the perfect housewife, but to accept herself and the importance of her life:
I was Katy Carr. My life wasn’t over. A new life was just beginning (Katy. Wilson, 2015, p. 470).
After the disabling injury, Katy is not told to find God or be a mother to her siblings to walk again; she is told to get on with it. Frustrated, lonely and angry, Katy struggles to accept herself:
Could it possibly be because I’m stuck here in a wheelchair being nannied by my stupid stepmother and my whole bloody life is ruined?’ (Katy, Wilson, 2015, p. 327)
Katy is not sure who to blame or if there is anyone to blame and so she takes it out on her stepmother and siblings. She is afraid to go to mainstream school and feels her life is over until she receives a visit from Helen. Wilson uses Helen for contrast, displaying her as someone who was born disabled and whose disability has progressively got worse over the years. However, both authors use Helen as Katy’s mentor:
…big difference between those… who’ve been disabled ever since they can remember and people… who have become disabled overnight. You’re thinking right now of all the things you can’t do… start thinking of things you can do (Katy, Wilson, 2015, p. 346).
Can I just say, this quote right here, it hits a point that you are aware of as a disabled individual. People born with a disability see it different to someone who was not originally disabled. Wilson’s choice to add a character who is born disabled shows some of the diversity within the disabled community – at least between those that become disabled and those who were born disabled. Favourite quote in the whole book!
Wilson also shows disabled characters as having universal and personal problems and emotions, linking to Faulkner’s belief about a writer’s responsibility to write about personal and universal experiences that readers can relate to (Faulkner, 1966, p. 287). This may influence people’s views on disability and represents the same individuality people have, imitating life:
…you can still be a cool person… wear interesting clothes and have lots of friends. But I also wanted to be truthful: some people make horrible comments… patronise and treat you differently (Griffiths, 2015).
Wilson tells The Times that she collaborated with disabled actress, Nicola Miles-Wildin as part of her research and to provide her with an insight into disability. Judging by the range of emotions experienced by Katy, i.e.: frustration, anger, love, and more. This clearly helped Wilson to portray a unique character outside of disability:
I got so hot with embarrassment my hand was almost too sweaty to keep contact with Ryan (Wilson, 2015, p. 455)
At the denouement, Katy has made friends, danced with her crush, and joined a basketball team, showing readers that Katy’s disability is not going to stop her from achieving anything. It illustrates a difference in how disabled characters are portrayed in contemporary literature as compared to classical The classic view of the disabled character was of someone who must be cured or die:
I’d had no idea that people with all kinds of disabilities could achieve so much. (Wilson, 2015, p. 470)
It is clear that when writing Katy, Wilson felt that she had a personal responsibility to tell a children’s story where a disabled character learns to accept herself. While the story does touch-upon Katy’s disability, the main focus is the protagonist experiencing universal concepts of love, anger, grief and hope (Faulkner, 1966, p. 287). Katy is depicted as someone who goes on emotional journeys and has the same experiences as anybody else, regardless of whether they are disabled or not. This links to Orwell’s view of a writer’s responsibility to influence political change (Orwell, 2004, p. 5). Just as Aristotle believed, Katy’s character shows her to have the same flaws and assets as any able-bodied characters, imitating life—a feature many books with disabled protagonists miss (Aristotle, 2016, p. 31).
Good Kings, Bad Kings by Susan Nussbaum
You may remember me giving a review of this book recently.
Written by disabled author, Susan Nussbaum, Good Kings, Bad Kings is told from the point of view of four disabled and three able-bodied protagonists. It is set in a specialist residential institution for the disabled and the story follows the traumatic events in the home.
Nussbaum wrote an article for Huffington Post, considering the portrayal and characterisation of disabled characters. She states that she avoids books that contain stereotyped disabled characters. This includes the characters being either a: “Victim, Villain, Inspiration, Monster” (Nussbaum, 2013). Yet, because of her political agenda against specialist institutions, this is exactly what her book becomes.
Tragedy is everywhere in disabled literature; seen in works such as: as The Hunchback of Notre Dame, A Christmas Carol, and Flowers For Algernon. However, Good Kings, Bad Kings has an unnecessary amount of tragedy. Each reinforces one stereotype often seen in Disabled Literature and films:
…popular culture of disability are conveyed by… heartbreak, misfortune, or tragedy… when stories… depict them in plots that have little or nothing to do with their disability, reviewers often remark upon the brave or noble protagonists (Markotić, 2016, p. 3).
Many of the individuals resident in the home are abused. Pierre, Chloe, Cheri are three that are regularly abused, even though they are not one of the narrators. However, Mia, Teddy’s Fiancée, is the most victimised protagonist of the story. Visually and physically impaired, Mia is not given the support and equipment she needs, is sexually assaulted and raped by a member of staff several times until she develops an STI:
…I gonna eff you. You want me to eff you,” and all bad things like that and he putting his tongue in my mouth (Nussbaum, 2014, p. 66).
The rape scene does not add to the plot of the story and is used for more exposition of the neglect in the specialist residential home. It demonstrates that Nussbaum has applied the stereotypes that she criticizes in disabled fiction:
Blind characters… are generally portrayed by attractive female actors who are victimized by predatory men (Nussbaum, 2013).
Pierre is physically assaulted and sent to a children’s hospital and Cheri is sent to a mental hospital as punishment. Other characters also fit the victimised stereotype profile that Nussbaum claims to dislike:
Just as a loaded gun shown in the opening scenes of a movie will eventually be fired, a disabled character will either have to be “killed or cured” (Barnes, 1992, p. 72)
Teddy is the only protagonist in the story who tries to control his own life, but an absentminded and careless employee of the residential home leaves him unattended with a faulty water-pipe:
She turns on the water and runs out. First thing I notice is the water is hot… the water is real hot… I yell out for Beverly…I see my skin on my hip and my leg getting all red…It feels like there’s fire coming outta the shower top. (Nussbaum, 2014, pp. 241-242)
Prior to this, it was not clear what the plot was. Rhe first three-quarters of the book focuses on the abuse of the institution as viewed from the perspective of the seven characters.
It is made clear in the book that Teddy’s death was an accident, although caused by a careless carer (Nussbaum, 2014). It was not maliciously done by the carer like the rape, or Pierre’s attack and yet this is what sets the initial protagonist on her quest:
This death or cure will often seem to “redeem” the protagonist—the death will be sacrificial, or the cure will be credited to the hero (Barnes, 1992, p. 72).
Teddy’s death was sacrificial. As the only character who had plans to leave the home, marry Mia and live independently, he was the only protagonist who had something to lose. Therefore, it could only have been Teddy’s death that directed the climax—lead by a protagonist that spoke to him only to lecture him about blaming Mia for her rape.
Nussbaum clearly had a political agenda when writing this book, illustrating her disapproval of nursing homes and institutions. As a political statement against specialist nursing homes, this book states its message and meets its agenda. Nevertheless, her approach has failed to tell an engaging and emotional story from the point of view of a protagonist with a disability or represent them as having universal problems:
Post-structuralist theory recognizes that a text cannot help but reinforce or challenge existing assumptions in society (Barnes, 1992, p. 8).
By having so many narratives, many of which have the same voice, Nussbaum struggles to construct believable and unique characters within the book. Nussbaum could have made the same political statement with an equivalent impact but told the story solely through Joanne, the only disabled employee or Joanne and another disabled character to show parallels and conflict. Aristotle believes having the right balance is important, tragedy is the magnitude of a serious event (Aristotle, 2016, p. 9) by illustrating many tragic events in a short book, Nussbaum loses the effect and lessens the magnitude of the events.
As the only disabled writer out of the three books being explored, readers could be expected to feel that they could trust Nussbaum’s view, representation and characterisation of disability due to her experience in the community. Therefore, Nussbaum writing a book full of stereotypes could do more harm for the disabled community than good and she must be held responsible for the consequences of this.
Amy and Matthew by Cammie McGovern
Amy and Matthew is told from the two eponymous characters’ perspectives. Like Me Before You and Behind Closed Doors, Cammie McGovern’s novel, Amy and Matthew falls under the Disabled-Romance genre—romance with a disabled protagonist. According to Kirstin Ramsdell, romance makes the reader care about the characters by appealing directly to the reader’s feelings and emotions (Ramsdell, 2012, p. 23). But this is not all the genre offers, it often includes a strong sense of female empowerment, explores important life changes and discusses social issues:
…linked to this moral advocacy aspect is the fact that romances also deal with important life changes and social issues, both inevitable and unexpected (Ramsdell, 2012, p. 23)
Amy and Matthew is a story, not of acceptance, but of teenage love, friendship and pregnancy. The characters have started experiencing sexual feelings and thoughts but they both have different opinions and actions based on these sexual desires. Matthew’s OCD prevents him from expressing or acting on them while Amy wants to have the experience of sexual intercourse for two reasons: for the experience and knowledge and to make Matthew jealous:
I ASKED HIM TO DO IT… BUT IT WASN’T THAT GREAT. IN FACT, IT WAS HORRIBLE… I KNOW IT WOULDN’T BE THAT WAY WITH YOU (McGovern, 2014, pp. 206-207)- Author’s capitals.
By including universal and social issues, i.e. love, sex and relationships, McGovern draws upon the readers’ own beliefs, experiences and desires about these concepts. Schopenhauer marks these desires as “The Will-to-Life” which makes all love affairs “worthy of the profound seriousness with which everyone pursues it”. As a result, it creates a point of reference that the readers can comprehend:
Writers featuring characters with disabilities who wish their story to have “universal” appeal must also grapple with decisions about what non-disabled readers will understand (Dunn, 2015, p. 7).
McGovern makes sure the characters are relatable through their desires and issues while subtly reminding the readers that the protagonists are disabled. McGovern depicted this through the characters’ speech, thoughts and actions. Matthew’s thoughts would centre on checking faucets while Amy’s speech would be capitalised to remind the reader that she needs to use a computer to talk:
‘I CAN TALK. I USE THIS. IT TAKES A LITTLE TIME.’ She was tired of people walking away too quickly (McGovern, 2014, p. 250).
While the story is not about disability, the characters’ disabilities are part of their holistic whole. Their speech, thoughts and actions are affected by their disability. McGovern uses this knowledge and Aristotle’s theory to subtly show the characters’ disabilities throughout the story:
…a person of a given character should speak or act in a given way, by the rule either of necessity or of probability; just as this event should follow that by necessary or probable sequence (Aristotle, 2016, p. 20).
The characters disabilities do not exempt them from the consequences of their actions, much like real life. After having consensual sex with Sanjay, Amy becomes pregnant, risks her friendship with Matthew, and jeopardises her university education. Amy is not forced into having sex and subsequently, her pregnancy is not due to being a victim or being disabled.
…character must be true to life: for this is a distinct thing from goodness and propriety, as here described (Aristotle, 2016, p. 19).
McGovern does not dwell on the fact that Amy—who can barely walk—is a disabled, pregnant young adult. Instead, Amy is determined that this is a decision she alone is going to make. When Amy sees the nurse about her pregnancy, the nurse does not try to talk Amy into an abortion but listens to what she wants. This constructs normality around the protagonist being both pregnant and disabled and may encourage the reader to view disability as normal:
Amy got the reassuring sense that she’d seen a lot worse than a disabled girl who’d accidentally got herself pregnant. (McGovern, 2014, p. 250)
Amy’s independent decision to give birth to the baby is a reversal in the story, defined by Aristotle as “change by which the action veers round to its opposite” (Aristotle, 2016, p. 15). At the start of the narrative, every decision in Amy’s life is made on her behalf by her mother, who is heavily influenced by an academic approach to understanding Amy’s difficulties. Amy’s life has been reduced to a collection of data collected by her mother in an attempt to see how well her daughter has adapted to the world:
Nicole loved goals. She loved evidence-supported theories and data-driven techniques. Say the word goal, Amy knew, and her mother would be looking to check it off (McGovern, 2014, p. 26).
Amy’s pregnancy lets Amy break away from her mother’s hold and make her own way in the world. She drops out of university and seeks solace from friends, asking them to keep her pregnancy secret from her mother:
Having this baby was the first truly independent decision Amy had ever made (McGovern, 2014, p. 274).
However, Amy develops pre-eclampsia, a rare, life-threatening condition in pregnancy. This is a plot device, used to move the story forward and increase the reader’s fear for Amy’s life:
… events inspiring fear or pity… is best produced when the events come on us by surprise; and the effect is heightened when, at the same time, they follows as cause and effect (Aristotle, 2016, p. 25).
As Amy is disabled, a female reader with the same condition may worry that this puts them more at risk of developing pre-eclampsia. Anticipating a disabled reader’s worry of pre-eclampsia, McGovern makes it clear that the illness is not a result of Amy’s disability but a coincidental result of her pregnancy:
Sue listened as he described Amy’s condition and the pre-eclampsia that was unrelated to her CP. (McGovern, 2014, p. 271)
As well as a reversal of situation, McGovern also has Amy recognise her own mistakes and follies and attempts to set them right by her actions at the dénouement of the novel, apologising to Matthew through a play she wrote for class (McGovern, 2014):
Recognition… is a change from ignorance to knowledge, producing love or hate between the persons destined… for good or bad fortune. The best form of recognition is coincident with a Reversal of the Situation (Aristotle, 2016, p. 15)
Through her portrayal of characters in her novel, McGovern seems to be a responsible writer as regards her depiction of disabilities in her fiction. Her portrayal of the eponymous characters was accurate, rounded and necessary without dwelling too much on their disabilities. Likewise, Wilson’s research into disability helped her to create an equally developed character; both writers illustrate that life with a disability can be just as fulfilling as life without. Both authors used the ideologies of Faulkner, Aristotle, Orwell and Schopenhauer to produce a creative and imaginative story about two young adults who also have disabilities.
In contrast, Nussbaum’s use of stereotypes and a lack of a narrative to challenge the stereotypes is irresponsible due to the portrayal of disabled individuals as helpless victims. Her political agenda to illustrate specialist nursing homes affected her ability to tell an engaging story.
As Nussbaum has a disability, Faulkner’s theory of the personal and universal responsibility may work against and harm the community she is trying to represent.
Furthermore, her illustration of disabled characters could have consequences that could harm the community she was trying to represent.
Join me Saturday when I post something relating to disability. In the meantime, feel free to glance at my bibliography.
 According to Dunn, P. A In: Disabling Characters: Representations of Disability in Young Adult Literature
 Stated on page 471 of Katy (Wilson, 2015) and in an interview with Sian Griffiths
 Mentioned in The School of Life. Philosophy – Schopenhauer [Online Video] https://youtu.be/q0zmfNx7OM4
- Aristotle, 2016. Poetics. Kindle ed. South Carolina: Arcadia Ebook.
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- Beauchamp, M., Chung, W. & Mogilner, A., 2015. Reflecting American Culture. In: Disabled Literature: A Critical Examination of the Portrayal of Individuals with Disabilities in Selected Works of Modern and Contemporary American Literature. Florida: BrownWalker Press, pp. 51-90.
- Boyd, B., 2009. Introduction: Animal, Human, Art, Story. In: On the Origins of Story. s.l.:Harvard University Press;, pp. 1-11.
- Boyne, J., 2010. The Boy in the Striped Pajamas. Oxford: David Fickling Books.
- Burke, S., 2011. In: The Death and Return of the Author. Edinbrugh: Edinbrugh University Press, pp. 86-94.
- Burke, S., 2011. The Birth of the Reader. In: The Death and Return of the Author. Edinburgh: Edinburgh University Press, pp. 19-49.
- Burnett, F. H., 2012. The Secret Garden. London: Vintage Books.
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- Dickens, C., 1993. A Christmas Carol. Hertfordshire: Wordsworth Editions Limited.
- Dunn, P. A., 2015. Introduction. In: Disabling Characters: Representations of Disability in Young Adult Literature. New York: Peter Lang, pp. 1-18.
- Faulkner, W., 1966. Acceptence Speach. In: Unified English. New York: Meredith Publishing Company, p. 287.
- Foucault, M., 1980. What is an Author. In: D. F. Bouchard, ed. Language, Counter-Memory, Practice: Selected Essays and Interviews. New York: Cornell University Press, pp. 113-138.
- Griffiths, S., 2015. What Katy could really have done; Jacqueline Wilson’s reboot of a classic novel has wowed disabled children. She tells Sian Griffiths why it’s time to swap sentimentality for sense. The Times, 08 October.
- Hugo, V., 1993. The Hunchback of Notre Dame. London: Wordsworth.
- Keith, L., 2001. Introduction. In: Take Up Thy Bed & Walk: Death, Disability and Cure in Classic Fiction For Girls. New York: Routledge, p. 5.
- Keyes, D., 2011. Flowers For Algernon. London: Gollancz.
- Markotić, N., 2016. Razzle Dazzle Heartbreak. In: Disability in Film and Literature. North Carolina: McFarland & Company inc., pp. 11-23.
- McGovern, C., 2014. Amy and Matthew. London(England): MacMillan Children’s Books.
- Moyes, J., 2012. Me Before You. London: Penguin Random House.
- Moyes, J., 2015. After You. London: Penguin Random House.
- Nussbaum, S., 2014. Good Kings, Bad Kings. London: Oneworld Publications.
- Orwell, G., 2004. Why I Write. London: Penguin Books.
- Paris, B. A., 2016. Behind Closed Doors. London: HarperColinsPublishers.
- Pinker, S., 1994. The Tower of Babel. In: The Language Instinct. London: Penguin Books, pp. 230-261.
- Ramsdell, K., 2012. Chapter 2 – The Appeal of Romance Fiction. In: D. T. Herald, ed. Romance Fiction: A Guide to the Genre. 2nd Edition ed. California: Libraries Unlimited, pp. 20-25.
- Tolstoy, L., 2016. Definitions Found Not on Beauty. In: A. Maude, ed. What is Art (Abridged. English ed. s.l.:Independently Published, pp. 66-71.
- Wilde, O., 2001. The Picture of Dorian Gray. London: Wordsworth Edition Limited.
- Wilson, J., 2015. Katy. London: 2015.
- Boom, R., Crazy Ex-Girlfriend, 2015-present [TV Series] Netflix.
- Bower, P,. The A Word, 2016-Present [TV Series] BBC.
- Hill, W,. (2004) ‘Deadwood’ Deadwood, Series 1, Episode 1. HBO. 21 March.
- Rashid, R,. Atypical, 2017-Present [TV Series] Netflix.
- The School of Life. Philosophy – Aristotle [Online Video]
Available at: https://youtu.be/csIW4W_DYX4
[Accessed 20 March 2018)
- The School of Life. Philosophy – Schopenhauer [Online Video]
- Burling, A., 2006. Author Interview: John Boyne. [Online]
Available at: https://www.teenreads.com/authors/john-boyne/news/interview-090906
[Accessed 18 February 2018].
- Nussbaum, S., 2013. Disabled Characters in Fiction. [Online]
Available at: https://www.huffingtonpost.com/susan-nussbaum/disabled-characters-in-fiction_b_4302481.html
[Accessed 31 March 2018].