This is the essay version of the Ethel Louise Armstrong Lecture I gave last year at Ohio State University. It was first published in the UK edition of So Lucky (Handheld Press, 2018), along with two other bonus essays. My list of book-length fiction for adults that passes the Fries Test now stands at 65 — but there are many more novels out there that could be on the list but are not, because, frankly, I keep forgetting to publicise it and solicit entries. So if you know of any, please add a comment here, where I can keep track of it, rather than on Twitter or Facebook or this post, where it will get lost.
Neither Dying nor Being Cured
by Nicola Griffith
So Lucky is, at heart, about the body — a changing body, and the way bodily change also changes our understanding of the world. (Just after my MS diagnosis I wrote an essay about this, ‘Writing from the Body’.) So Lucky is the story of Mara, a woman on top of her world, who’s never met a challenge she couldn’t deal with — until, in space of single week, she is diagnosed with MS, divorced by her wife, and loses her job.
Unlike a lot of fiction written by nondisabled people, in this book Mara doesn’t die, and isn’t cured. She ends up figuring out a lot of stuff, falling in love again, making idiotic decisions, making money — and fighting monsters, human and otherwise. There’s a lot of exterior action in this novel. It is a novel, not a memoir, although it does have autobiographical elements. Like me, Mara is queer, diagnosed with MS, and loves martial arts. Like me, she is a creature of the body.
The body is my language. It’s how I learn about and relate to world.
That physical relationship to my surroundings influenced the kind of wheelchair I chose, when the time came. I could see immediately why a full power chair might be a good idea. In a manual wheelchair: you need two hands to move; while you are moving you can’t use your hands for anything else. A power chair controlled with a joystick means you can steer one-handed: hold a beer and move through a party, open a door and go through it, pick something up in passing. Despite all that, I chose a manual wheelchair with electric-assist — the same kind of power boost as an electric bike. I really wanted to feel the relationship of my effort to my movement: to go fast I have to push hard. I need to feel the laws of physics operate through my body.
As a cultural producer and performer, I am thoroughly embodied. As a writer, I bring the reader into my fictional world through the character’s physical, embodied, experience. What a character feels, what they notice of their world — and how they feel about that — tells the reader a vast amount about who they are: their temperament, attitude, and experience. (Lovers walking into a forest might look for a private glade. An ecologist notes the fallen leaves that form the soil that feeds the worm that feeds the bird that feeds the marten that feeds the bobcat. A logger would see board feet.)
There’s a lot of evidence from cognitive science to show that we as readers take the experience — the emotion, the thoughts, the struggles — of well-drawn characters as our own: books are empathy machines. But writers aren’t machines, we’re people. We are not separate from our work; we imbue our work with our own experience and perspective. With my fiction, I’ve always written from who I am and where I am, emotionally and physically.
I’m a queer woman, and the protagonist of all my seven novels, and all (but one) of almost twenty stories, is a queer woman. This is what comes naturally to me: I am a queer woman so I write about queer women. And in my fiction, queer women’s bodies are sites of delight rather than struggle — because I never associated being woman, or queer, with internal struggle.
I’m lucky, I think. Growing up I somehow avoided internalised homophobia and internalised misogyny, or perhaps I learnt to automatically counter-program them.
I knew as soon as I knew my own name that I was girl who liked other girls. I didn’t see anything wrong with that: I was utterly fabulous, and I was queer, so being queer must be fabulous, too. Writing queer protagonists was natural and good and easy. But I didn’t write stories about being queer, or the difficulty of being queer, or realising you were queer. My characters just were queer — and the stories were about something else. In story terms, queerness was not interesting to me.
It’s different with disability.
I did not grow up disabled. I did not develop an awareness of this culture’s bias against, horror at, and disdain for physical and intellectual difference; I did not learn to defend against it or counter-program it. Instead, sadly, I absorbed and internalised it. I bought the ableist storyline whole. The ableist bias I absorbed was implicit, not explicit — I didn’t even know it was there — but it constrained my thinking and understanding of the world as surely as an iron cage.
I was diagnosed with MS 25 years ago. Perhaps because my physical impairments gained on me slowly it took years to feel the sting of nondisabled people’s dismissal. It took years for me to begin to understand that I’d been dismissing my disabled self. But more likely it took me a long time to recognise the ableist narrative I’d absorbed, the implicit rules I’d been bound by without realising it, because I had nothing to compare it with, nothing to contradict it. I had no role models.
Growing up I hadn’t seen disabled queer women — in real life, or on page or screen — at all. When finally I began to see disabled characters in books and on screen they were distorted clichés: tragic cripples, angry cripples, helpless cripples. Cripples whose bodies, like those of queer people, were portrayed as sites of difficulty rather than delight. In other words, the only disabled people I watched or read were written by the nondisabled who have no clue of the lived experience of a disabled person and so were just reiterating and reinforcing the ableist narrative.
I believe that today the majority of disability fiction for adults — YA and kidlit is a different case and beyond the scope of this piece — is roughly where queer fiction was 60 years ago: full of protagonists who are remarkable only as a piteous creatures crying out to be treated as human, and relying on the kindness and forbearance of strangers. Who are, in Mitchell and Snyder’s term, narrative prostheses, that is, narratives that use disabled people as a metaphorical opportunity — usually to inspire or teach or otherwise manipulate the emotions of nondisabled people.
Last year, disability activist Kenny Fries formulated the Fries Test (inspired by the Bechdel Test in which a film must have two names female characters who talk to one another about something other than a man). He asked:
Does a work have more than one disabled character? Do the disabled characters have their own narrative purpose other than the education and profit of a nondisabled character? Is the character’s disability not eradicated either by curing or killing?
If you can say yes to all three questions, the book passes the test.
The Fries Test is a low bar: the characters don’t have to have names, they don’t need to talk to one another, and certainly not about something other than disability. But it’s what we have.
In late 2017 I put out a call on social media for book-length fiction that passes the Fries Test. Half a year later I have exactly 55. Some of the 55 are old. Some out of print. A handful are not in English.
Think about that. More than a thousand years of English literacy — and we have 55 book-length works of fiction that pass the Fries Test.
Stanford Literary Lab suggests that the number of novels extant in English is on the order of 5 million. Given that 1 in 5 people in majority English-speaking countries are disabled, you might hope that 1 in 5 novels in English would pass the Fries Test (actually you’d hope for more, because the test is such a low bar). So there should be one million novels that pass the Fries Test. But there are 55.
There are 999,945 stories missing. 999,945 voices missing.
We need those voices. Without mirrors, without seeing ourselves, we believe the bullshit that is fed to us by nondisabled people. We believe the ableist narrative. I certainly did. I saw myself as a failed able person, a second class citizen, wrong. I was taught to pity disabled people and so saw myself as pitiable.
To write So Lucky I had to unlearn all that.
I wish I’d been able to get over my own ableism earlier, to transition to a wheelchair years ago. The wheelchair is changing my life; it’s easier for me to be me in a chair than on crutches: on crutches I struggle; in a wheelchair I don’t. In a wheelchair my head isn’t fogged with anxiety: ‘Can I walk that far? If so, will I have any energy when I get there?’ In a wheelchair I have the freedom to notice the world, to notice people, to be in the world, not fighting the world, or feeling fought against. But I was afraid of being in a wheelchair; I was afraid of being one of Them, of being Other.
Perhaps this is how it felt for most queer people growing up decades ago: afraid, alone, feeling wrong. And then queer culture flowered. People found each other, built their own communities, lived in neighborhoods where they became the Norm, where they could see themselves as they really were, not as a straight people saw them. At that point queer people were no longer hiding, no longer pretending to be straight (and, in some cases, desperately wishing to be). We loved ourselves, our queer bodies. We were out, and — finally — proud. And only after that were there books and films and music — and, eventually, TV — worth watching.
But as a crip, even 20 years ago, I felt as though I had no good models. I didn’t know how to write the kind of novel I wanted and include disabled characters. All I saw around me were interior, angsty stories of characters pleading for recognition. I didn’t want to write that. And I didn’t want to write a novel in which a character like me had to sacrifice herself at the end to benefit a nondisabled character.
What I wanted was to write a novel the way I’ve always written a novel — full of joy, and will, and agency, and event — with lots of queer women, but this time also with crips; with a disabled protagonist. But because I had no models, I didn’t really know how. So, again, I did what queer writers decades ago did: I wrote a kind of Coming Out novel. Mara is diagnosed with MS and figures out what that change means.
Having said that, in many ways So Lucky is not a Coming Out novel. It’s not about learning to love yourself just as you are and fighting for acceptance. It’s more about learning to see clearly:
- Learning to see the lies we as disabled people have been, and still are, fed; the box we’ve been put in.
- Unlearning our own ableism.
- Breaking out of the box.
- Overwriting the ableist narrative.
Ableism is a crap story. We can make better ones. But to do that we need to see ourselves. We need mirrors. We need to hear our own voices. Our strong, beautiful, ordinary, disabled voices. We need to see and hear ourselves. That’s what So Lucky is about: getting past the bullshit fed to us by society and then figuring out how to break that narrative, how to free ourselves and others, and how to build something of our own. Because it’s only after you’ve broken out of and thrown away the old story that you can start to build your own.
One thought on “Neither Dying Nor Being Cured”
Thank you for sharing this here.
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