The Man on the Hallway Floor: Disability and Writing Character

A writer friend of mine asked a question: why do non-disabled authors feel compelled to fill this gap by writing fictional books about disabled people?

This is important because we live in a world both where there aren’t enough disabled protagonists and abled authors actively, even if not intentionally, do fill this void. Sometimes I feel it’s for good reasons, as the abled author seeks to provide a more honest snapshot of reality in their fiction, or that the abled author recognises that most abled portrayals of us are dreadful and seeks to ensure that we too should have realistic, natural, empowering representations of our lives.  Sometimes I feel it’s for bad reasons, as the abled author is using disability to manufacture drama or throw a spanner in the works, especially if this is followed by complete recovery or a poorly-portrayed experience of actually being disabled. Sometimes I feel it’s for terrible reasons, as the author just wants to do something different, and abled authors often get a lot of attention and awards for daring to break the typical mould of what makes a narrating protagonist. It is, for some reason, seen as brave to write outside one’s experience.

I answered with a question: why do disabled authors feel compelled to write fictional books about abled people?

I see discussions about who should write what and why. I see disabled creatives discussing the works of abled creatives who write disabled characters. I see far fewer discussions that explain why I, a disabled writer, have struggled all my writing life to write my own lived experiences into my characters.

I’m disabled. Multiply disabled. (Not all people with my medical history will consider themselves disabled. That’s fine. I do. I have to.) I have been all my life, although I didn’t begin to know it until seven years ago. Not knowing labels, though, doesn’t mean that I don’t know what it is to be those things. It just means I lacked, for so long, the benefit of a label, and now I get context, dialogue and a community to accompany the experience of disability I had all along.

If we want to take my chronic hand pain as a case study, I’ve been in pain for six years as of this month. Six years. (I actually made a mistake on my hospital forms by writing it as five. I’ve been in pain so long now I can’t keep track of it.) So how many characters have I written with hand pain, hand limitations or some other hand-related disability in that time? As of two months ago, none. Most of my characters can be seen, with hindsight, as autistic, especially in terms of their sensory processing differences, but how many of them, before my diagnosis, were purposefully written to explore life lived as that collection of divergence from allistic norm and SPD (which I’ve blogged about, so I’ve known myself to have sensory processing differences long before anyone formally told me I’m autistic) usually called “autism”? Before beginning Kit March, one. As for anxiety, depression and abuse/trauma, well, I’ve written several characters purposefully meant to explore this, but none before I first saw a psychologist, even though I suspected I was depressed for several years beforehand.

But this isn’t even the beginning of what I haven’t talked about. My twenty years of chronic insomnia made it to a character once. I experienced complex visual hallucinations throughout childhood, and know well what it is to tell someone that something they can’t see is real to me, even when this thing has me shaking in terror, but those hallucinations never made it to a character. My partial seizures, my dizziness and headaches that come from both overstimulation and exposure to various scents and chemicals, my sensitivity and/or aytpical responses to various common medications, my motion sickness?

When I wrote Darius lying on the hallway floor because he’s spent the conversation breathing in coffee and oil and enduring glaring light, so now the only thing he can do is wait until the nausea goes away and then, hopefully, sleep it off if circumstances allow, I wrote something I’ve experienced at least once a fortnight over the past four years. No big deal. Or, at least, it isn’t to me, because it’s remarkable what the human body and mind can endure when one is given no choice in the matter, and I well know how much better I have it compared to so many. I wanted, in that story, to write a character who goes through what I go through, picks himself up, dusts himself off and keeps going, largely by arriving in a space where he doesn’t have to waste time on pretending to own a body absent assumed-unconventional demands, needs and oddities.

Normal, for me, is pain, unpredictable dizzy spells, the crashing black-and-white-striped wave of seizure rolling through my head, panic attacks, depression, the knowledge that the world that is too much and too present for me is somehow just right for most others. Normal, for me, is disability. It’s always going to be. There’s no changing that. Why shouldn’t my characters live that, too?

It’s taken me years, though, to get to a point where I can proactively, deliberately and gladly write characters who experience my normal.

Until relatively recently, I wrote characters who aren’t my normal. If they were disabled, they were disabled in all the ways people think of when they whisper “disabled” or its tangle of insulting synonyms: blind, wheelchair users, cane users. Anyone visibly, obviously disabled. When writers spoke of including disabled characters, it never occurred to me, as someone with many experiences of disability but does not appear disabled to others if I don’t wear my splints or let myself limp, to include me. I had to learn, first, that I was disabled, how I was disabled, and how to accept being disabled, and those things aren’t simple to learn.

But, and here’s the sticking point, why should they be?

Disabled authors aren’t encouraged to write about disabled characters. We’re not even encouraged to be disabled ourselves, so how are we supposed to write and express ourselves in our characters when we’re pressured into giving our whole lives over to the art of appearing as abled as possible?

This year is the first time I’ve found a psychologist who uses the word “disabled” in conversation with me and acknowledges me as a disabled person. Despite being in pain for six years, the closest I ever got was “limitation”. When I talked about writing on this blog, and psychologists asked if I were comfortable with them reading, it, I refused. Not because I was was writing anything I didn’t say in session, but because I dared refer to myself as a disabled person, and I feared how they’d respond to a word they refused to give me. I was on disability support at university, yet I still never had anyone refer to me as disabled. I have no real formal diagnosis as to my chronic pain, despite the fact it has persisted for six years, because doctors cannot or will not consider it an illness. Shall I mention how long it took me to be told I am autistic? Three weeks ago I sat through a series of lectures at the pain management clinic that was all about justifying why it was appropriate to take aids away from people with chronic pain – disabled people. I’m disabled, at least as regards my hands, because of a workplace injury, but it was deemed appropriate by my first-aid-qualified supervisor to deny me medical treatment for a second injury because she considered me a workcover cheat. She suffered absolutely no consequences for this, even when I filed a complaint. I, however, no longer have a (different) retail job because I make faces, unintentionally, that offend people. I’m only welcome in a retail job if I can successfully, completely and eternally mimic allistic people, but ableist arseholes can keep working just fine. Shall I continue? Because this is only a drop in the ocean! How many disabled people of colour have been murdered, massacred, in the US alone this year? How many disabled people have died from lack of treatment or access to financial support? How many disabled people are forced to remain in abusive and dangerous situations because they cannot afford to get themselves out?

Every time I turn around, I am faced with a new proclamation of the fact that I am not allowed to be disabled, and I’m saying this with the privilege of being white and Australian. I am not allowed to be disabled, says the world, and I deserve to not be treated, acknowledged, included or employed because of it.

Everything from a refusal to mention the word to a refusal to treat me is ableism, and all of it is diminishing and damaging.

When a disabled writer writes a disabled character, it is a powerful declaration of existence in the face of this ongoing dehumanisation. With Darius I am saying something that people do not tell me: yes, I lie down on the floor because the lights are too glittery and the smell makes my head compress, and I’m not going to hide this like the world tells me I should, but I am still a competent human being who deserves to be a heroic protagonistEven if I have to nap before we go hunt down this Dark lord. I am sticking my middle finger up at the world and saying that, actually, I am okay, I should exist and I can accomplish things (but my value should not exist in my accomplishment) because of, despite and irrespective of my disability. I am saying that the details of my experience, as a disabled person, are storyworthy and important, no matter what the world says about me and people like me.

I am saying I exist. I am defying the programming that has taught me, all my life, I am only valid if I can pretend to be abled.

When a disabled writer writes a disabled character, we have to confront our own internalised ableism, the ableism expressed by those who work with us and the ableism expressed by society. This isn’t a quick process. To get to this point has taken me years and I still feel like I have barely begun it!

I know why I am compelled to write books about abled people: ableism. After all, we’re taught from birth that abled people are the only ones who matter, so why shouldn’t we write about them? Why shouldn’t we hate ourselves so much we make the subconscious choice to excise ourselves from our fictional creations? We’re not taught to love ourselves! We’re not taught to exist for ourselves! We’re taught that our only worth lies in how well we can fit into and function within an abled capitalist mould but, if we can’t do that, we exist to teach the abled a lesson about their own worth, so we should take that and be happy. We’re taught to hide as much of our difference from the assumed norm of how to human as is possible, always, because we’re not allowed to be disabled. Is it any wonder so many of us end up depressed?

But why do abled people write about us?

It’s still ableism.

Why wouldn’t an abled writer write about us? Our lives are a quick and ready go-to for adding drama and misery to a character or plot because of the ableism that teaches it is awful to be us. Want to give a character something to overcome? Disability! Want to tug at your audience’s heartstrings? Disability! Want to position your writing as different? Disability! It’s all right there, an endless selection of options to make your audience feel anything from inspired to sympathetic to encouraged … but only the disabilities that don’t bore or annoy or frighten or dissuade or confuse or disgust an audience, of course.

But even an abled writer, who actively rejects the mode of thought behind that above paragraph either through knowing disabled people or just being a decent, self-aware person, will find it easier to write about us than we do.

No, I’m not referring to detail or accuracy.

Abled writers just don’t have to confront, examine and navigate self-hatred in order to acknowledge that their disability exists and is an acceptable thing to include in a character. They don’t hate themselves for being disabled, and they haven’t been taught to hide their disabilities away from society, their families and friends, and even themselves, the way disabled people have. When I write Darius lying on the hallway floor, I’m writing against every time I’ve staggered in the street with my groceries, terrified that I’m going to pass out or vomit before I make it home. I’m writing against every time I’ve dragged myself a few steps to my bed because I’ll look more frail and pathetic if I just lie down on the kitchen floor. I’m writing against every time I’ve crawled across my bedroom floor only to force myself to stand as I walk though the rest of the house to the toilet, because I can’t show my family, not ever, how dizzy I am. I’m writing against my own internalised ableism and self-hatred that says I don’t get to appear disabled and I am only a good disabled person if I hide my experience from others. If I believe that about myself, and I do, how can I not believe it about my characters?

An abled writer never has to do this. They can just write the character. At worst (best for us), they worry about accuracy and motive. It’s easier for them because the colour, difference, education and interest disability adds to a character is all external. An abled writer can write about us precisely because they aren’t us, and they often have more opportunities to do so with far more reward. We still live in a world where an abled writer gets all manner of praise for including, no matter how badly, disabled characters, even if those characters exist simply to make abled readers feel good about themselves and their lives. (We, on the other hand, are disabled, so writing disabled characters shouldn’t be considered special or courageous: the ableism here denies the impact of ableism on our lives and expression.) Ableism is the very mechanism that rewards abled writers for writing us while frowning on us for daring to express the real details of our disabled lives. Of course they can see the absences and seek to fill them – we’re too busy trying to hide our real disabled selves lest we be the subjects of hate and violence! We have far fewer opportunities open to us, fewer ways to physically or mentally access those same opportunities, and fewer means of physical, mental or financial support while we do so. If an abled writer doesn’t experience pain every time they touch fingers to keyboard and doesn’t have the speech quirks of an Aussie-accented autistic that render voice-to-text an exercise in absurdity, of course they can write about us with more reach, frequency and access than I can!

Without ableism, no abled writer would have the reason, the need or the ability to fill those absences. The question exists because of ableism.

When I finished by saying that the answer to both those things is ableism, though, I didn’t mean abled writers of disabled characters are all ableist arseholes who hurt, intentionally or accidentally, disabled people. It wasn’t even a criticism of the question itself.

What I meant was this: we are all, disabled and abled writers both, creating within the confines of a limiting, restricting social construct. My inability to write disabled characters is as dangerous and ableist as an abled writer’s free rein to write whatever disability inspires them regardless of knowledge or authority. All of us, always, are committing crimes of ableism: we’re all as like, without the benefit of self-examination, to write an abled mentor to a disabled character, because in this ableist world this is what we experience. Realising that this is wrong means facing life-long social programming, and this programming runs so deep one must expect to spend a lifetime itself challenging and deconstructing the idea of how disabled people exist. The only difference is that we disabled people have vested self-interest in learning not to hate ourselves!

To call something ableist isn’t something we should fear or resent. It is a mere statement of fact that arises from the natural state of creating anything within this construct.

Nobody will ever know, truly, what it took for me, and what it means, to write a man who just lies down on the hallway floor. It’s not an ability I possess myself. It’s not an ability I may ever feel safe enough to risk for myself. It is an ability that runs counter to everything I know about how I’m supposed to be human, and that’s why I wrote it, but the K. A. of two months ago couldn’t have done so.

At the end of the day, what and why we write what we do is shaped by that one eternal constant we must break down.

Why? Ableism.

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Pain Study

The doctors look at you and ask you that dread question.

They asked it before. You answered it before. It never gets easier.

They look at you, while you try to find the right words, and the idea that you sit down and write stuff with any kind of eloquence but can’t tell this story to save your life leaves you flapping your hands in despair.

It’s not hard, surely?

Tell your story. Explain your pain. Do so in as few words as possible but in a way that has you taken seriously as a patient.

Right.

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