Disability has a bad rap. According to the dictionary, I am the definition of a monster. According to The Witches, Ectrodactyly means you hate children and are a demon.
I’m fairly sure that when disfigurement and disability is used in literature and the movies as metaphors for the evil and grotesque, no one even thinks of it as an appropriation of the disability aesthetic at all. It’s so historically ingrained it seems like a neutral and obvious choice. They don’t know the history, and they don’t have the exposure. And so we are left with bad representation.
In Zadie Smith’s essay Fascinated to Presume: In Defense of Fiction she says,“Aren’t we a little too passive in the face of inherited concepts? We allow them to think for us, and to stand as place markers when we can’t be bothered to think. What she said. But surely the task of a writer is to to think for herself {…} I do believe a writer’s task is to think for herself, although this task, to me, signifies not a fixed but a continual process: thinking things afresh, each time, in each new situation. This requires not a little mental flexibility. No piety of culture —whether it be I think therefore I am, to be or not to be, you do you, or I contain multitudes— should or ever can be entirely fixed in place or protected from the currents of history. There is always the potential for radical change.”
I am currently on a creative team in which my role, aside from writer, is also to be disabled. I am deliberately crafting narratives with disabled protagonists —ostensibly, representation is my job. Before that, I did it in my memoir, and before that, I did it in my magazine. I’ve been doing it online (and on stage) for years. Disability and adventure, disability and glamour, sex appeal, emotional range, great shoes, disability in the background doing no heavy lifting. It can be done. But even though the experience I render is mined from my lived life, it still takes this ongoing flexibility of thought, of questioning myself and wondering deeper into the character —even if she is me— deeper into the why.
What do we mean by representation? In the movies, in art, in stories, do we mean a depiction which is accurate? Something like we expect from documentaries? Which sometimes feels like the only place the mainstream is ‘comfortable' with disabled bodies. For a community of people trying to wrest their identity out of the clutches of the medical complex, accurate can feel like stepping back. Medicine can be very accurate about our bodies. But it has nothing on our souls.
So what then is good representation? Is it volume? Is it an aspirational quality? Fantasy? That it make us feel seen or others understand? Is it neutral, present but allowing for the story to be about the heart? the mind? Something like: an ill-advised family vacation that is upturned by the reveal of a long-held family secret while everyone is trapped in a remote log cabin - that is also not accessible.
In her essay, Smith talks about believability vs correctness. A character doesn’t have to be correct, it only has to be believable. She says that the novel’s job is to make the reader believe the characters are real and the situation is happening, even though it’s obviously made up. She says, “Novels are machines for falsely generating belief and they succeed or fail on that basis.”
In my real life, when I am interviewed and featured, I relentlessly encounter disbelief that I did not wrestle with self loathing and insecurity because of my disability. It is not believable to the mainstream or to individual reporters and producers that I could be more or less ok with how my body looks and functions. Even though it is true. They want a ‘believable’ story, they want to hear that I hated my body, and then learned to love it in some inspiring way.
It is completely believable to audiences that you would be able to tell a demon from a human woman by whether or not she has a limb difference.
As a writer and artist, I aim to create a new believability. I am keenly aware that my disability, in itself, doesn’t represent anything at all. It’s neutral until it interacts with external forces. The story is that interaction. I eschew the anthropological voice, the need to fit into a model. What non disabled person thinks to themselves, I’m living my life from a moral model instead of behavioral model. Only those who are studying such things. But disabled people frequently introduce themselves conceptually to the world by describing models of framing disability. Medical or social - which is also academic. Like we have to make constant studies of ourselves and be scholars of our lives, not livers of them.
I don’t want my literature and movies and art to turn polemic, to unravel critical social history and do the ableism 101 dance just to get a disabled character on the page. We need those things. We need them loud and we need them on repeat. But we also need what only story gives us.
Soul. Substance. In fiction we could breath. Live briefly in the world as it could be. Refresh ourselves with that ineffable nourishment when something beyond cosmetic, surface appearance— that deep place of self— resonates seemingly without effort. Except it takes a lot of effort to create that experience for another. And I don’t think it can happen in the isolation of one single story. One narrative builds on the next, this is how symbolism comes to exist. Story piled on top of story. Disabled bodies suffocating at the bottom of the narrative heap. When symbols become, they take on a life of their own — but they don’t become at all without us.
We can render disabled bodies of healthy power, disabled bodies of desire, disabled bodies of complicated human goodness, disabled bodies doing regular shit without drowning in sentiment. We can protect our disabled bodies from being used, unthinkingly, to evoke monstrousness and incite fear and disgust.
We, the creators, make meaning. And then meaning makes us.
Recently the #NotAWitch campaign on Instagram reached Anne Hathaway who was able to hear the pain her caricature of limb difference had caused and apologize. I had been writing my thoughts on this down when it happened, asking, who is the person that asks the director: why does your villain have to be disfigured/disabled? If you’re villain is disabled, why not make the hero disabled, too? Are you sure you want to lean harder on the message that evilness is reflected in bodily differences? I mean… hating kids to their death isn’t proof enough of evilness? Do you really think this looks more like cat claws? By the time the disability community is pointing it out, it’s too late. So who gets to bring it up when there’s still time to generate a better idea? People like Anne Hathaway, it turns out! It’s good to see the message reach her, get across, maybe spark better questions in the future.