Palatable Or Real: Do Disabled Writers Conform to An Able World View? (Part 1)

Since the very first novel, the issue has existed of literary representation of disability. There are examples of both poorly depicted, stereotyped portrayals, and thoroughly researched, thoughtful representations, across different authors. The question is, what fuels each representation? More stereotypical, simplified depictions may be fuelled by ignorance and stigma. For every disability, there has been a corresponding stigma. However, if ignorance fuels depictions of disability that conform to an ableist or able worldview, the question remains of what drives the more understanding, realistic, layered representations. One example I will discuss in more detail later, is Louise Fein, author of ‘The Hidden Child’, whose depiction of epilepsy truly touches the heart of readers who suffer the same or similar seizures to little Mabel, the young protagonist. Fein had an experience of epilepsy, and the very same seizures Mabel suffers, through her daughter, who had consistent, violent epileptic seizures. Fein, however, is one of few able writers who used personal knowledge to portray disability realistically. I wish to discuss the opposite trend and pose the question; can able authors truly depict disability realistically, or do you need lived understanding in order to portray disabilities as the multifaceted, multidimensional issues they really are?

Misrepresentation or Coding - Mark Haddon and autism

Mark Haddon, since having received backlash over ‘The Curious Incident of The Dog in The Nighttime’, has claimed that his protagonist is not autistic. However, it is then odd, that he researched the autism spectrum while writing. It is also slightly inconceivable, that a character who fits copious stereotypes of a specific disability, should not be represented. Furthermore, it seems extremely coincidental, that this character should be clarified as not having that condition only after backlash is received.

Christopher Boone is portrayed as smarter than his peer group – an autism myth is that autism always manifests as higher intelligence. His peer group includes children described as stereotyped SEN students. Christopher is also portrayed as having episodes incredibly similar to stereotypical depictions of sensory overload. He screams, rocks back and forth, and cannot be touched. His love of Wellington perfectly fits the myth that autistic people prefer animals’ company. If Christopher was not intentionally written as autistic, yet conforms to these stereotypes, then there remains the issue, of an able author creating an autism-coded ‘unusual’ character. ‘Autism coding’ is where writers incorporate common, often stereotyped features, of autism, into characters with the intention of making them ‘quirky’ or ‘cute’. It is a poor surrogate for proper autistic representation. Autism coding, such as what, assuming the best, is happening with Christopher Boone, glosses over the trials the autistic community faces, portraying what can be debilitating challenges, as ‘quirky’ traits, to endear readers to the character, or make them more ‘interesting’. If Christopher Boone was not intentionally autistic representation, the possibility of an able author using autism coding to portray an unusual child may be a worse example of able writers portraying disabilities unfavourably. Christopher Boone also falls into victimised representation. Originally, he is denied the chance to sit his A Levels early despite his stereotypical mathematical skill, his mother leaves because of his tendencies, and Christopher is attacked by her affair partner. I imagine, for the autistic community, the victim portrayal, adds insult to injury.

The main source of division in the autistic community, surrounding Haddon’s novel, is not that the author refuses to definitively portray autism. Nor is it that this autism portrayal, or autism coding, is a cluster of stereotypes. What makes the novel so problematic, is the inconsistency within this cluster. Despite his problem with metaphors and blunt way of speaking, Christopher Boone is written with the social skills, life skills and ability of a low support needs autistic child, but his dependence on his father and response to sensory overload is far more typical of a high support needs autistic child. Further, while Christopher is highly dependent on his father, in another example of inconsistency, he is depicted as being able to travel to London alone, with only the aid of Siobhan in his head. Reading Mark Haddon’s novel, it is as if the diagnosis that we should assume of the protagonist, is ever-changing. Were he made entirely of high support needs stereotypes, or entirely of low support needs stereotypes, of course, the autism portrayal or autism coding would still be damaging. It is the inconsistency regarding which end of this spectrum he conforms to, that shows Haddon’s assumption, that every stereotype applies to all autistic people. The ever-changing diagnosis of Christopher – high support needs or low support needs – and the assumption that it implies the author has made, is perhaps why the autistic community is so divided on the novel. Whether you choose to adore or hate it however, Haddon’s portrayal of autistic tendencies, is highly stereotyped, under-researched (by his own admission) and damaging.

Walking in a Week - Johanna Spyri portraying non-ambulatory wheelchair users

Another author, who, sadly, must be confessed as being guilty of misrepresenting disability through a severe lack of research, a lack of medical knowledge, and an avoidance of consulting anyone with lived experience of the disability she portrays, is Johanna Spyri. Spyri lived in a time when being associated with anyone who lived with a disability was shameful, and to be scorned. However, in a time when, across the world, people with disabilities were disgracefully paraded in circuses and asylums for the able-minded, able-bodied, it would still not have been so very hard to do research into wheelchair users. Within Spyri’s children’s novel, entitled ‘Heidi’ there are in fact two disabled characters. One in the form of ‘Grannie’, who is represented as blind, and the other, in the form of the vilified, victimised, Clara. Before we discuss her, however, I would like to clarify that Clara’s character is not portrayed as an ambulatory wheelchair user, and I am not claiming that her both walking and using a chair is an inaccurate depiction. For those who have not read Heidi, this might be an easily misinterpreted point of the novel. Clara is represented as learning to walk again, albeit highly inaccurately, but she is not in fact depicted as an ambulatory wheelchair user. Clara is depicted by Spyri as having been wheelchair bound by rickets, the cause of and treatment for which were not known at the time ‘Heidi’ was written. The treatment for rickets was not discovered until 1919, by Kurt Huldschinsky in Germany, and until his discovery, children and infants would often be all but paralysed by the disease, explaining Clara’s situation. Throughout the novel, Clara is depicted as being bratty, demanding that all is done for her and using her wheelchair as an excuse for her behaviour. It is not until Peter throws her wheelchair off of a cliff in a jealous rage, I would argue makes him dangerous, that Clara begins to become a nicer person again while being shown kindness, as she relearns to walk. Here is where the inaccuracy shines in Spyri’s text. Speaking – well, typing – as someone who has been wheelchair dependent, and has also had to relearn (and is still, to an extent, relearning) to walk, I only wish that it had been like it was depicted for Clara. In reality, it takes years of physiotherapy and support from numerous trained therapists and doctors, and if anything, during these sessions, you can become a breathing nightmare out of frustration and the emotional toll that completely relearning basic mobility skills takes. It is unrealistic, portraying a non-ambulatory wheelchair user relearning to walk in a matter of days, with no emotional toll despite the fact that she has been placed in one of life’s most vulnerable predicaments – relying on others entirely to aid her every step. Another unrealistic aspect to Spyri’s tale, is that helping Clara Walk again have no training, no experience, and have never encountered the disease affecting her until Clara is introduced to them. Yet there is not one moment of panic amongst them when her only mobility aid is destroyed. Spyri’s heart-warming message that everyone, able or not, deserves friendship, is undermined by her lack of research and misrepresentation of Clara’s disability. There is also the damaging message that the way to improve disabled people’s personalities, is to make them able, and ‘fix them’. While the disabled character is deemed worthy of friendship, it could be interpreted as being because she is later ‘fixed’, or ‘cured’ and that the permanently disabled do not deserve friendship the way she does.

Disability Consultation – Lord of the Flies

Though I criticise these authors’ disability representation, and the inaccuracies within their novels, I am not trying to argue that able authors should not be allowed to depict disabled life at all, for four main reasons, including the obvious. The first reason being, this would be an extreme and ridiculous measure to take. The second reason is that empathy for any community can never be promoted by banning all other communities from portraying them in literature. Thirdly, this would increase the unspoken taboo around disability, it would change the phrase ‘disability is not a bad word’ to ‘disability is not a bad word unless you’re able’ and increase ableism further. Finally, I may be stubborn but that doesn’t mean I believe all able authors are bound to misrepresent disability. That would be a ridiculous assumption to make. My argument is that able authors without lived experience of disability should either be willing to do the research required for accurate representation, or should consult someone who has knowledge or lived experience of which disability they want to represent. Perhaps if Mark Haddon had done so while writing ‘The Curious Incident of the Dog in the Nighttime’, researching more into the differing behaviours and experiences in the spectrum of autism, his protagonist would not have aged so problematically. Concerning Johanna Spyri’s portrayal of a non-ambulatory wheelchair user, perhaps if she had spoken to people with Clara’s condition and challenges, one more person would have had a sense of empathy in a period where disabled people were treated abhorrently. Though this is not a literary example, it comes from experience. In high school, in my final year, one of my English Literature teachers asked me to be involved in the school production of William Golding’s ‘Lord of The Flies’. Although hesitantly due to A-Levels approaching, when I joined the production (because I am a theatre nerd and couldn’t resist a show), she asked me to help with our production’s portrayal of epilepsy, to avoid misrepresentation. I worked with the boy portraying Simon on representing realistic seizures and the underlying anxiety that Simon would feel prior to seizures. If my able teacher could pause and specifically consult someone with lived experience of the disability she wished to portray, would it really be hard for able authors who have far more people they could talk with? Now, all of this is not to say that there are absolutely no able authors who do their research or consult lived experience. That would be a ludicrous, completely false claim to make. There are of course able authors who do their research, have lived experience, or consult those who do live with disabilities if they have no experience themselves. One able author who used both lived experience and copious research for her novel portraying epilepsy, is the author of my favourite disability novel, ‘The Hidden Child’. My example of an able author portraying disability accurately, realistically and heart-touchingly (I confess a bias), I will discuss Louise Fein.

Louise Fein portraying epilepsy

An able author who portrayed disability well, if not perfectly, is Louise Fein, who wrote a heart-warming, tear-jerking depiction of epilepsy through her young protagonist, Mabel. Fein depicts the epileptic community’s lives as they were one hundred years ago. While depicting the condition realistically and movingly, Fein forces readers to confront historical prejudices textbooks often gloss over. ‘The Hidden Child’ also stands out through the author making epilepsy a character. Throughout the novel, epilepsy’s character repeatedly voices disgust at the humans around Mabel, and their treatment of those outside able norms. Both the inside and outside perspectives of epilepsy provide realistic portrayals of seizures, side effects, and uncomfortable prejudices towards Mabel challenge readers to consider if these attitudes have really been eradicated. One such attitude is that of Mabel’s nanny, who tells her the cause for her seizures is inner evil, sadly one of many myths about epilepsy still believed today. In parts of Africa, this belief is why epileptic children are killed by being fed acid, if not by their mothers (who are forced), by the community. Another myth Fein addresses, is that those with epilepsy are hypersexual deviants. Both myths continue to be believed today, and are explored through Edward, who is portrayed later having the ‘horrible realisation’ that his eugenics theories are unsubstantiated, life ruining ignorance he must redeem himself from.

‘The Hidden Child’ also discusses humanity’s treatment of those with epilepsy through the voice of the condition itself. The voice of epilepsy gives speeches throughout the novel, lecturing humanity on how “It is I who have more humanity than you.” One speech confronts how the epileptic community have been killed throughout history; “How many women did you burn at the stake?... How many asylums have you filled with the sane?”, “It is me who is with her when her stomach gripes…her throat burns from the bromide salts you force into her.”, “When she staggers… weak limbed, from your sickening administrations”. Epilepsy’s voice appears so sympathetic to little Mabel, it could be forgotten, it is another of the characters making her suffer, every time it ‘doubles [its] gifts’, forcing the grimace onto her face, ‘as if there was a monster inside Mabel… she couldn’t come back to herself’. Notably, this quote describes the young protagonist ‘not [being] able to get back to herself’, implying that while her uneducated mother sees it as evil befalling her child, she sees Mabel there all the same, and the child herself is not monstrous. The sentence also implies that Mabel is not defined by the seizures she experiences, they are not ‘herself’. Fein portrays epilepsy realistically; it is not only the condition itself victimising Mabel, but the people around her witnessing it, whether misguided like Eleanor, who allows her to be ‘locked in a sanctuary for those your society would rather did not exist’, desperate to distance themselves from epilepsy, like Edward, or trying to help her, like Dr. Eversley, who places her on the ketogenic diet only after starving her, to see if the diet will work. Fein also depicts epilepsy multidimensionally, portraying not only seizures, but medications, their side effects, the fatigue, others’ concern and disgust, and the fact that while prejudice is real and frighteningly common both inside and outside of the novel, there are also people who understand and help, instead of defining you by your epilepsy. Louise Fein is an example of an able author who both consulted lived experience (that of her daughter, who suffered violent epilepsy most of her life), and was willing to do the research needed to avoid glossing over uglier truths.

Villain or Complex? The Voice of Epilepsy

Although the previous paragraph could be misconstrued as epilepsy being an entirely sympathetic character, a further credit to the novel is this is not so. Though the neurological disorder is a half sympathetic character, it is ambiguous whether it is heroic, villainous, or more morally complex. Though epilepsy’s voice is portrayed more heroically than the majority of Fein’s human characters, it is not entirely sympathetically. There is ambiguity as to whether the voice of epilepsy truly cares for little Mabel, or whether the condition is more disgusted at the humans’ behaviour in the novel without necessarily caring too deeply for her. Aside from the nature of epilepsy, this is because, when the condition describes itself, or the seizures it inflicts on the toddler, it is written as doing so with a sense of pride. In one of many speeches throughout the novel, epilepsy describes the auras that can come before seizures in a way that almost seems to be taunting readers and taunting all who have ever tried curing the condition. Epilepsy’s voice describes how “while you numb and deaden her senses, I redouble my efforts to bequeath her my greatest gifts…” This could refer to some experiencing greater clarity during auras prior to seizures. However, the pride with which the voice describes driving a little girl to fatigue, hallucination and seizure related nausea, ignoring the compassion it appears to have throughout the book, could make one feel physically ill. The voice of epilepsy also describes how ‘it is me who is with her when her stomach gripes, and her throat burns….’, ignoring that ‘sickening administrations’ would be unnecessary if the condition left little Mabel alone. The question of whether it can be aware of this, as it seems aware of the manmade consequences of its being, creates further ambiguity around its character. Is it lecturing human society? Or taunting them all with the certainty that no matter the manmade consequences; ‘rich or poor, genius or moron, I can get you’. Taking this into account, the voice of epilepsy, is at least morally grey, although not completely villainous. However, whether epilepsy’s voice is morally ambiguous or clean cut, Fein’s portrayal of life with epilepsy one hundred years ago, and the aspects of this life that still exist, realistically and in a way that tugs at readers’ heartstrings, whether you suffer the same seizures as little Mabel, different ones, or none.

Part two of Emily's entry will be posted soon--stay tuned for the next installment!