When Cerrie Burnell was hired in 2009 to be a presenter for CBeebies there was a flurry of parents filing official complaints to the BBC to oppose this being “allowed” on their television screens. They argued that their children would be frightened and “freaked out” by Cerrie. Why? Because Cerrie’s lower right arm is missing.
What led to such a reaction? The dehumanisation of Cerrie in this manner, as something “freaky” or to be “feared”, is an attitude that is still widely prevalent to this day, and has historical roots in the ableist treatment of those with disabilities and disfigurements throughout history.
In the 20th and 19th century freak shows involved those with disabilities, disfigurements or bodily conditions being exhibited as “freaks”, and were used as a common form of amusement for the general public. Such shows were incredibly profitable for the showmen, and this shouldn’t be forgotten in the context of the recent movie The Greatest Showman (2017), which erased several elements of P.T. Barnum’s problematic and exploitative use of those with disabilities, and went as far as to romanticise his legacy.
Even today, the tradition of the “freak show” continues in evolved forms, such as shows like Channel 4’s The Undateables and Too Ugly for Love? Those without disabilities watch such things and are able to partake in a self-gratifying pity-fest, entirely unaware of the patronising and exploitative elements that affect those portrayed.
When we look closer at children’s literature and movies, these attitudes are further established. Villains in children’s literature and children’s film are often disfigured or disabled. Peter Pan’s Captain James Hook has a hook for a hand, Scar from The Lion King has a scar on his face, In Roald Dahl’s The Witches, the witches, who eat children, have no hair and no toes, and even in Harry Potter, as Voldemort’s soul disintegrates, the more deformed his body becomes.
This common trope may go unnoticed by the able-bodied community, but it means the only representation that those with disfigurements and disabilities is that of villainy. The idea of evil is being continuously linked to those with disabilities or disfigurements, and writers and filmmakers need to understand this is unacceptable. This is inappropriate representation that only seeks to further prejudice and marginalisation for those within these communities.
‘Changing Faces UK’ is one of the leading charities aiming to change this by campaigning for “a world where people positively welcome a new baby with a cleft lip and palate, invite the school friend who has Apert syndrome to their child’s birthday party, and confidently shake the hand of the interview candidate who has eczema.” They have been in discourse with several media companies in order to change this, and one of the movies particularly celebrated by them is the adaptation of R.J. Palacio’s Wonder.
Wonder follows Auggie, a young boy in New York with the rare medical facial deformity ‘mandibulofacial dysostosis’, starting his first year at school. Auggie is ostracised by nearly all the student body, and the film follows his relationship with his family, those who he befriends, and his aspirations to become a scientist. It’s a moving tale that finally centres on the experience of those with disfigurements, but also makes a powerful commentary on the oppression that those in these communities undergo. A scene where the mother of another pupil explains why she photoshopped Auggie out of the class photo due to his condition “ruining the photo”, echoes the Carrie Burnell controversy.
Wonder isn’t the only example of representation for characters with disfigurements or disabilities. Katy, from Jacqueline Wilson’s 2015 novel by that name, is a protagonist in a wheelchair with a complex and sophisticated story. Augustus Waters and Isaac from John Green’s The Fault in Our Stars are also examples of this. However, there’s still much more to be done. We still run the risk of such characters being flat, and must continue to ensure the disability itself is not made to be such characters’ only personality trait.
The author of new short story collection In The Beginning of the World in the Middle of Night, Jen Campbell, makes several videos raising awareness for the need for appropriate representation of disability in literature and film. She describes one Icelandic fairy tale which she felt did this beautifully, The Myth of Sedna. Sedna is a girl, who is also a giant, whose father insists she must marry. Due to her repeated rejection of her father’s wishes, her father wishes to throw her overboard and Sedna clings onto the side of the ship by her fingers; her father then cuts off her fingers one by one. Sedna falls into the ocean, becomes a Goddess of the deep, and her fingers become seals and whales of the ocean and live underwater.
The myth of Sedna presents a story of disfigurement which is both beautiful and empowering to those who undergo similar conditions, such as Campbell herself who, having ectrodactyly which can affect the hands and fingers, struggled to see appropriate representation for those like herself.
The representation of disfigurement in literature, film and other medias needs to continue in a way that will do members of these communities justice. Through the eyes of Auggie in Wonder we were able to see the cruelty that the able-bodied community inflict. After a day of ostracisation at his school, Auggie is crying about the bullying of his facial disfigurement and asks his mother “will it always matter?” To answer Auggie’s question, until media is held accountable for the just and proper telling of these narratives, these perceptions won’t change.
Writers and filmmakers need to start making a place for the disabled community in their narratives, and not just tokenistically. We need stories where those with disabilities, disfigurements or other disorders aren’t reduced to their condition, but are central characters with their own complex and authentic narratives. As ‘Changing Faces UK’ writes, “we want nothing short of a complete reframing of disfigurement which tells the truth about this experience and acknowledges everyone’s right to acceptance on equal terms.”