Palatable Or Real: Do Disabled Writers Conform to An Able World View? (Part 2)

Intro to disabled authors

Though I would love to discuss at least twenty disabled authors, when researching this article, I did not find many. In fact, most of the disabled authors I came across were long deceased, and only theorised to have been disabled. Hardly the level of representation I had been hoping for, but nonetheless interesting, if not more so because of the scarcity. One deceased author now theorised to have been disabled was particularly interesting and provided an example of both lived experience being used for disability representation, and also of under researched portrayals without lived experience. The same author was not widely discussed as being theorised to have had the disability he may have lived with. I will cease being cryptic and disclose the name of the author I mean. When researching disabled authors who portray disability within their texts, I found a surprise celebrity in the figure of Charles Dickens. I will confess, in my personal opinion, his writing is dry, and quite wordy for my taste. However, it was intriguing to discover the famous author is now theorised to have had epilepsy, then called ‘the falling sickness’ or mistaken for bursts of apoplexy. Even more curiously, when depicting disabilities other than epilepsy, Charles Dickens’ portrayals have aged as incredibly damaging and under-researched. As discussed in more depth in my previous article, his representation through Tiny Tim in ‘A Christmas Carol’ has aged as appallingly shallow. The child’s disability is not even disclosed – it is only explored as a redemption device for the antagonistic main character, Scrooge. Tiny Tim has mobility issues, coughs repeatedly and will die should the old man not change. That is all we know about him. This is what made the discovery that Dickens may have been a disabled writer so shocking. He seems to have only written in depth portrayals of what may have been his own condition, never even visiting an asylum (or any disabled individuals rich enough to avoid being kept in one) to research other disabilities. Other disabled writers I came across, were Elle McNicoll, and Rosie Jones, who use their works to portray autism and cerebral palsy respectively. Crucially, both choose to do so, in children’s books, Rosie Jones through her children’s series ‘The Amazing Edie Eckhart’, and Elle McNicoll in her novel ‘A Kind of Spark’. Both authors are the first I have discovered representing disability with firsthand experience, in texts aimed at younger readers. As biasedly as I appreciate Louise Fein’s novel, it must be clarified that her experience is second hand, through her daughter. Further, ‘The Hidden Child’ is not for children with the topics it handles, and the distress readers feel for Mabel.

Elle McNicoll’s ‘A Kind Of Spark’

Elle McNicoll’s ‘A Kind of Spark’ depicts autism accurately. One of the first subjects explored, is ableism toward a child. On the very first page, we are faced with Miss Murphy destroying Addie’s work, declaring her handwriting a ‘babyish scrawl’. Addressing the under discussed aspect of autism often unexplored within popular portrayals. Autism can affect motor skills, sometimes through ‘atypical’ gait, and often through handwriting. Though there are no certain reasons why, there are theories, one being ‘differences in brain wiring’, affecting how quickly hands act on the brain’s signals. The stereotype McNicoll addresses, is that of autistic individuals having illegible ‘lazy’ handwriting to be scolded. Miss Murphy is later discovered to have acted on this ignorant, bullying attitude, towards Keedie, when teaching her, as Keedie asks if she is now ‘too old to bully’. This also confronts the hard truth of disabled children being seen as easy targets by both adults, and children, as peer group bullying is explored through both Addie and Keedie. Nina confesses she let her friends bully Keedie to avoid being stigmatised for defending her, and that the guilt has been consuming her.

Addie emphasises feeling closer to her autistic sister, Keedie, who experiences the same challenges to her, than to her neurotypical sister, Nina, and this creates resentment. Desperate to bond with Addie, Nina does so through a makeup tutorial. It becomes clear she is using Addie’s autism for viewership, opening with ‘Addie is autistic, so she doesn’t care about beauty’. As Keedie brings up later, this clarifies that Nina has fallen into the trap of using disabled family for ‘internet brownie points’, an unfortunately real trend whereupon decent behaviour towards disabled individuals is framed as special. ‘Fake spotting’ is also covered through this video. Addie’s autism is questioned online – it is even suggested she is not autistic because she is verbal, another example of McNicoll not shying away from less discussed, darker aspects of disabled life.

One of the darkest truths McNicoll confronts is the occurrence of autistic people being wrongfully sectioned, explored through Bonnie. Addie describes how Bonnie had ‘meltdowns, but was good’, and was ‘taken away’, further explaining, ‘no matter how much she tells them to let her out, they won’t.’ Though probably not impressing the situation’s true horror, Addie explains it clearly enough that Bonnie being wrongfully sectioned and denied the chance to re-enter society is evident.

Even carers downplaying ableism is explored through Nina informing Addie, Bonnie’s false incarceration ‘is not the same’ as false accusations against women, who in reality were often disabled, and incarcerated during witch trials, insisting ‘it’s not the same’ even after Addie’s discovery of a so-called witch who is labelled as having had special educational needs. The theme of downplaying disabled trials is also discussed through Addie and Keedie’s parents believing Miss Murphy is ‘hardly as savage as [Keedie is] making her out to be’. This is unfortunately really experienced by disabled individuals. Even carers do not wish to believe that the world is as discriminatory as it is, perhaps from desperation to believe in disabled family’s safety. As with McNicoll’s novel, everyday acts of ableism are often downplayed until extreme discrimination happens. Addie’s parents do not believe Miss Murphy or Emily are as horrible as their daughters describe until Miss Murphy defends Emily’s destruction and defacement of Addie’s pocket thesaurus with scissors and the r slur. With the stereotypes, and hard truths her novel confronts, McNicoll proves an author with both research and lived experience, provides groundwork for far better representation than we have seen so far from authors without disability experience at all.

The Amazing Edie Eckhart – Rosie Jones’ representation of cerebral palsy

The second disabled author I will discuss portraying disability - specifically cerebral palsy - is Rosie Jones, through her novel “The Amazing Edie Eckhart”. Patronising pity, exploiting the disabled card and fear of burdening loved ones are just three subjects Jones covers. Though how the protagonist can switch from sympathetic to unlikeable, is the book’s true perfection, Jones refusing to place her as either saintly, or cynical. Though I appear to sing Jones’s praises as if she is the new children’s disability literature messiah, this is not to say her novel had no problems. Acknowledging Jones’s series is for children, it is still a simplified, mostly happy go lucky version of disabled life she depicts. Though the description of Edie’s physical experiences was as simple as it should be, for children, what irked me was how briefly Jones explored disability’s impact on mental health. Although Edie tells Flora she doesn’t want her to think Edie a burden, this thought is put to rest unrealistically quickly. Though I do not live with cerebral palsy, like Jones or her protagonist, I can say, if you have reached the point of seeing yourself as a burden, kindness is not all it takes to undo that thought track. I will not destroy the novel based on this, but suggest it would be healthier not to teach children they should ignore or shove these thoughts down, which escalate when unaddressed. Rather, we should teach children to feel they can discuss and work through these thoughts without the conversation being shut down. Another aspect of Jones’s novel I question is the suggestion Edie ‘didn’t know what it was to be disabled’ as a child. Charming idea though it is, I am not sure it can be said to be true. I will not suggest children fully understand disabled life in an able world, but that whether through different treatment from teachers, pity, ignorance, or peers’ curiosity, they are made to feel different, and at some level, know what it is to be disabled. Jones also addresses the disability card, being changed from a necessary tool into an excuse. Edie describes how she and Oscar were once late to a lesson and avoided punishment using the disability card, since then using it repeatedly to avoid responsibility. This is important to address. Disabled children must learn to differentiate when disability is a reason, to avoid isolating themselves by overplaying the disabled card. I speak from experience as someone who, as a child, tried to play the disabled card to get out of dance workshops if I didn’t feel like trying that day. It is however frustrating, that Jones addresses this, but not the more essential truth, that feelings of being a burden do not disappear quickly and should be talked through and recognised. Within the unrealistic story of an eleven year old being desperate to date (only unrealistic because, from experience, this desperation kicked in later, at fifteen), Jones includes a sad truth. Edie asks Oscar what to do should someone not want to date her ‘because of the palsy’, which, although this too is shut down and glossed over, is a real fear the disabled community faces, not solely because of ableism, but the effort we are taught goes into loving us.

Although addressing an unfortunate truth, again, Jones immediately shuts it down instead of having characters talk through it, which would discuss an important issue to teach children about. On the same page, Jones leaves a problematic attitude unquestioned. Oscar declares Stephen Hawking ‘was waaay more disabled than you.’, ‘if he got a wife, of course you can get a boyfriend’. Jones may be portraying reluctance correcting friends, or addressing a sad truth of disabled dating. Edie does not inform Oscar that linking how severe someone’s disability is, to their capability of getting romantic partners to be interested in them, is a problematic attitude, and in reality, would be deeply upsetting to hear voiced. Later in the novel, reluctance to date disabled people, is shown through Nat being paid by Tom to go on a date with Edie, as he pities her, thinking she will not get a date otherwise. Though undisclosed whether he thinks her disability will hinder her romantic life, it is implied. Though Edie forgives them both, it is left unaddressed that Tom paying Nat to go on a date with Edie devalues her, while exposing Nat’s problematic embarrassment at being seen on this date. Echoing sentiments toward Nessa Rose in the popular west end musical, and recent film, Wicked. Pushing Boq to ask Nessa Rose on a date, Galinda calls her ‘that tragically beautiful girl’. Nessa Rose later asks if Boq dates her ‘because I’m in this chair, and you felt sorry for me’. Both attitudes victimising.

Jones’s novel is an improvement in children’s literary disability representation but stops short of exploring taboos in depth, whether this is for children’s sake, or for able readers; it could be interpreted as sanitising disabled life, assuaging able guilt.

Dickens; An icon or not?

Though Charles Dickens was never recorded as having epilepsy, there have been speculations about him having been epileptic. Though I will not claim he certainly had epilepsy, nor that he certainly did not, I advise caution for those in the epileptic community who may be eager to adopt him as an idol, for various reasons aside from speculations on his having had epilepsy being uncorroborated. One of these reasons being that, in my personal opinion, it is highly unlikely the famous author really had epilepsy, as he would surely not have dared to give public readings in a time when the treatment of those with chronic illnesses was so infamously barbaric. Even if Dickens had lived with nocturnal epilepsy, not enough was known about the condition during his lifetime for him to have been sure that his seizures would not happen in the day during one of his readings. A second reason being that Dickens, whether sympathetic to the epileptic community or not, was constrained in how he acted towards, or portrayed us, by the era he lived in. While being disabled in Victorian times was certainly more dangerous, what was also dangerous, was being an ally to the disabled community. Those who dared speak out against the treatment of disabled people (of which there are very few that we know of) were forced to feel the consequences of this compassionate error. Those empathetic towards the disabled community were shunned, stigmatised, or even cast into asylums alongside those they tried to defend. In an era where the consequence of compassion was life going gradually insane in an asylum, and asylums were used like circuses, Dickens could not be seen, to hold empathy towards epileptic people. I feel it is essential to be forewarned of this, because if you wish to believe that Dickens had epilepsy, or was openly sympathetic to the epileptic community, you must understand, he could not afford to be. Privately, the famous author’s compassion may have outshone a redeemed Ebeneezer Scrooge. Inside his novels, he had to conform to the empathy lacking, illogical views of Victorian society. This explains why his epileptic characters, such as Monks from Oliver Twist, or Bradley Headstone from Our Mutual Friend, were (now uncomfortable), prejudiced depictions, that could make you feel queasy if you looked toward Dickens for openly expressed empathy. Both Bradley Headstone and Monks are depicted experiencing seizures that appear epilepsy related. Headstone even states ‘I am accustomed to be seized with giddiness’, while catching hold of a pillar for support and being told ‘You are quite ill’, by a man who ‘if [he] knew an ashy face when he saw it, he saw it then’. After being ‘seized by giddiness’, Bradley headstone is observed leaning against the pillar, tearing at his neck cloth, which together with an ashen complexion and ‘being accustomed’ to these fits, alongside ‘giddiness’ often being used as a euphemism for seizure activity in Victorian times, would heavily imply his being epileptic. While neither character is disclosed as having the condition, both also conform to Victorian society’s prejudiced assumption that epilepsy was an indication of criminality. Headstone attempts to murder Wrayburn, first intending to beat him to death, later trying to drown him, and Monks plots with Fagin to entrap Oliver in a life of crime so that he might never claim his inheritance.

Though not quite as ruthless as Bill Sykes, Monks is in fact close enough with the villain, that Sykes murders Nancy for revealing Monks’ plans to Oliver. This was not only a perhaps strategically unsympathetic depiction of someone living with epilepsy, but of those who would choose to be aligned with the epileptic community. Both Fagin and Sykes are aligned with Monks, and both are written as unlikeable, antagonistic, immoral figures, although Fagin’s moral failings were more involved with him being an antisemitic, stereotypical portrayal of a Jewish man in an era where antisemitism was normalised. In Oliver Twist’s literary origins, there are several quotes about Fagin so blatantly antisemitic I am uncomfortable even with the idea of repeating them.

By depicting a ruthless murderer, and a corrupt thief, as the only people willing to align themselves with an epileptic character, Dickens conforms to the expectation that only scoundrels and truly evil figures would associate themselves with anyone who had the condition. Interestingly, however, it is more Monks’ brainwashed hatred of his half-brother that drives his violent, manipulative actions, instead of his epilepsy being the sole motive. While Monks and Headstone are, by modern standards, uncomfortable depictions linking epilepsy to criminality and violence, it is interesting that in both cases, there is something other than their condition goading them into acting against others. With Dickens’ seemingly in depth knowledge of epilepsy, and his quiet expression through these characters of it not being epilepsy alone that made people evil (a quiet expression, but there nonetheless), it is possible that he may have known someone who lived with it. Hypothetically, Dickens may have hidden himself every time he felt an epileptic aura, but I find it unlikely that he would not have been discovered. Personally, I would celebrate his having been a potential ally to the epileptic community, although I would not be too quick to, as there are less prejudiced idols, and his antisemitism is repugnant.

Sanitising disability to be published

So do able or disabled authors portray disability more accurately? Is it about going deeper than physical experiences, confronting both external and internal ableist voices? Must lived experience be consulted? Someone with lived experience, is, at least regarding the examples discussed here, more likely to portray disability accurately. However, experience is not all that contributes to realistic portrayals. Louise Fein looked into attitudes, epilepsy treatments, and ideology, until her eyes were likely that special type of painful only research makes them.

I know not every author will be unconstrained in what disability experiences they portray. Dickens wrote epileptic characters as compassionately as possible by making them multifaceted, but due to the constraints of his time, he could not explore their mental health, and how epileptic life affected them, or his books would have been deemed too empathetic, shattering his reputation. One wonders if Rosie Jones sanitises disability so noticeably because of her target audience being children when she created Edie Eckhart. How many publishers are willing to discuss, in a children’s novel, disability’s impact on mental health, or internalised ableism, in depth? I cannot imagine many would want to explore these issues in a world where we are so uncomfortable saying ‘disabled’, we replace it with ‘differently abled’. Within Phillipa Perry’s article about able people’s nervousness and awkwardness in disabled people’s presence, the journalist described an experiment. Able people were asked to sit beside a member of the disabled community. Half were first allowed to stare through a two way mirror at the disabled person they were to sit next to. The other half sat down immediately. Those first allowed to stare, sat closer, than those sat down straight away. It could be argued that half sat closer from a better sense of familiarity with the person they were allowed to stare at. However, the fact remains that there is indeed a certain sense of awkwardness and anxiety around disabled people. In Phillipa Perry’s words ‘Humans are innately wary of those who are different, and to feel that anxiety is vulnerable making’. I myself question if some of this anxiety comes from a well-intended fear of saying or doing something wrong, because so long has been spent throughout history mistreating the disabled community, that ‘we are now working out how to be with them’.

While some able authors may not do the proper research, disabled authors, too, have a duty to portray the darker realities of disabled life. Elle McNicoll’s ‘A Kind of Spark’, proves this possible – both small acts of ignorance, and extreme acts of ableism, can be portrayed without the target audience being changed. It falls to not just the disabled community but loved ones to stop sanitising, simplifying, and misrepresenting disabled life in literature, conforming to what assuages able guilt.

While considering why disability is sanitised by different authors in order to be published, we should think about why we replace the word ‘disabled’ with ‘differently abled’, and ‘disability’ with both ‘different ability’ or ‘unique ability’. According to Disability Rights Florida, ‘there is often a feeling of unease among people outside of the disability community when it comes to naming disability for what it is’. The article also discussed the fact that we often use the prefix ‘dis’ for words with negative connotations, even though it really means ‘another way of being’. The apparent need to avoid saying ‘disabled’ or ‘disability’ causes a lack of familiarity with these words which ‘can certainly be understood as a substantial contributing factor fuelling the proliferation of disability euphemisms’. As the article deliberated, however, it is able people choosing these euphemisms and largely disabled people rejecting terms such as ‘uniquely abled’, and ‘differently abled’. While it may be well intended, choosing ‘nicer’ words to describe disability, the problem arises from the fact that the disabled community has been rejecting these euphemisms time and time and time again – some have even spoken out on feeling like we are being erased from the narrative by these terms – yet the treatment of ‘disabled’ like it is a curse word, persists. The article also suggested that the euphemisms are ‘just enough of a positive spin to relieve much of the unconscious discomfort’. This is the same reason publishers sanitise disability – to alleviate the (unnecessary) guilt and awkwardness that able people feel around the disabled community. If I may be frank very briefly, if we feel the need to sanitise a word describing disability, to sanitise phrases describing the disabled community, how on earth can we avoid disabled authors feeling the need to conform to an able word view by sanitising disabled life in literature?