This is part 2 of my response to Lionel Shriver’s views on appropriation and representation of others’ experiences. (Part 1 is here.) In this part I critique some examples of disability, mostly representations of albinism (my disability), that were written by non-disabled authors to demonstrate why our voices are needed to tell our stories and to reinforce the necessity of adequate research.
Some not-evil representations of albinism feature in Akata Witch by Nnedi Okorafor, The Broken Kingdoms by N K Jemisin and The Extraordinaires by Michael Pryor. The vision impaired or albino character is a protagonist in each of these stories and at no point is the ‘disabled-therefore-villain’ trope used. However, all these representations are flawed. Each of these flaws has ramifications for those living with disabilities.
Sunny in Akata Witch is allegedly an albino: she’s fairer than her Nigerian family so her father hates her and she gets sunburnt. After Okorafor establishes that people with disabilities are magical (a common trope) and are not healed, early in the story Sunny’s magic cures her so she doesn’t get sunburnt any more. She’s not vision-impaired at any point in the story either. Sunny is just a different colour; why not make her Tanzanian, half-European or blue?
The not-really-disabled trope and the magically-healed trope are problematic as is the misrepresentation of albinism. The not-really-disabled or faking-disability tropes incite discrimination, harassment and even violence against people with disabilities. People have accused me of ripping off the government by faking a disability even though I’m not receiving any financial benefits. Complete strangers have harassed me on the street for ‘pretending to be blind’. People in wheelchairs have even been the target of discrimination and harassment because of public perceptions. I loathe the faking disability trope.
Complete omission of vision impairment as part of albinism strengthens the implicit ‘faking disability’ trope. If I am ‘just’ a bit fairer than other people, why am I claiming a disability?
In reality, the insufficient pigmentation that causes fairer-than-usual skin also causes vision impairment. Fovea (the bits in your retina, eyeball, that you use for facial recognition and reading) and the macula (the bits in the retina that give you peripheral vision) are made up of pigment. I’ve been told I don’t have any fovea and my macula are under-developed. Also, light passes through my irises and eyeball, scrambling the light-signals. There are other common symptoms of albinism but those alone should be enough to explain why albinos are vision impaired. A very fair albino will be legally blind or even totally blind. I’m ‘lucky’ in that I have pretty good eyesight — for an albino. But people don’t know that albinism and vision impairment go hand in hand, which causes problems, including discrimination and harassment.
Furthermore, albinos suffer discrimination in Nigeria (also cited here by the Albino Foundation). Albinos are hunted for their body parts: this article calls for people to tell the UN that albino-hunting in Nigeria is not common and yet none of this is mentioned in Akata Witch, a novel set in Nigeria. Akata Witch sets out to be a story of ‘other’, written by an American-born Nigerian, set in Nigeria, but without lived experience of albinism in Nigeria. I’m sure Okorafor would lambast me if I wrote a novel about a Nigerian girl without doing my due diligence in terms of research and consultation. I don’t know what her thoughts are on white appropriation of Nigerian culture.
Oree in The Broken Kingdoms is blind but she can see magical beings and magical objects, complicating matters because Oree can fall into the ‘faking disability’ trope at times while, at others, she’s vision impaired or completely blind. However, the story is told from Oree’s point of view so the reader knows she’s genuinely blind or vision impaired, depending on the situation.
The flaws with Oree’s blindness range from her ability to weed a garden to her use of a cane.
Unless you’re going to put your nose right on a weed, I defy you to determine whether this or that is a desirable shoot or a tiny emerging weed in a garden bed by scent alone.
According to Jemisin, a cane tapping on stones sounds the same as a cane tapping on ice coating a stone. I beg to differ. Also, a mobility cane isn’t just for sound, users feel texture through the cane. A cane will tap then slip across ice more easily than stone.
Canes also need to be light: even my aluminium canes tire my arms when walking a long way and are hazardous when I jog. Canes break because they are, by necessity, lightweight and, after much use, they become fragile.
Finally, when Oree can see via magic, she has to decipher the world around her but she never makes a mistake, not with depth perception and not by misinterpreting what she sees. These are the kinds of errors a non-disabled author makes when venturing into the realm of ‘other’.
(Please note: Jemisin is a Person of Color and has been the victim of horrendous racial abuse. She speaks with authority about issues of race but needs more research and vision impaired beta readers to avoid common misconceptions.)
In The Extraordinaires, Evadne Stephens is an albino and she has a vision impairment. However, Evadne has glasses that miraculously take her from legally blind to fabulous eyesight. My supervisor when working for the Department of Health in South Australia told me ‘Your disability is your fault because you’re too vain to wear coke-bottle glasses’. Evadne’s glasses improving her vision that much reinforces misconceptions, making life more difficult for those living with this disability.
An example of a non-disabled author writing symbolic generalized disability is Joanne Anderton in Debris. In this story, Tanyana, a gifted non-disabled woman from the wealthy upper echelons of society acquires a disability because she’s victim of a conspiracy. Once disabled, she’s condemned to the untouchable caste with all the other disabled people — most of whom were born disabled — who are forced to clean up toxic waste. Tanyana is the saviour of the lowest caste, bringing them together to create a culture and community they didn’t have without her. I found this novel deeply offensive when I first read it so felt compelled to moderate my gut reaction when I wrote my review. However, I repudiated other reviewers who were excited about this novel that they said ‘was about disability’.[In a monotone:] Yes, because the Privileged Ones must save us. We are nothing without your bountiful munificence. Yaaaaay. [snark]
When I interviewed Anderton she said her novel was about identity not disability, which distinction I appreciate. However, within the novel it appears otherwise. I am still horrified that reviewers not schooled in disability were making those comments and applauding this misappropriation of disability.
Each of the above stories features a protagonist — a hero — with a disability but each of these representations is flawed. These flaws wouldn’t matter as much if there was a plethora of representation, accurate representation, diverse representation. However, most representations of disability reinforce existing problems caused by public misconceptions because they are written by middleclass non-disabled authors who haven’t experienced disability and haven’t done sufficient research.
Part 3 will be published next week.