On Friday May 13 I gave a presentation at the University of Washington’s Pacific & Western Disability Symposium. The theme of this year’s symposium was making disability public in art, scholarship, and activism, so that was how I focused my talk. I spoke for 35 minutes (about half was taken by 2 readings), and then artist Riva Lehrer spoke for 40 minutes about her work as a portraitist. We both then talked about the process of making her portrait of me, from our different perspectives as subject and artist, and then we did audience Q&A.
The event was captured by a CART stenographer but we only have a rough, unedited version. I’ll talk to Riva about whether or not she’s okay with me posting what she said, but for now here’s the main part of my own segment.
It’s also available as a PDF.
I write for three reasons. I write because I love it; I write to find out; and I write to change the world—which is what I’ll be focusing on today.
Adrienne Rich said, “We must use what we have to invent what we desire.” What I desire is a world where those of us who are traditionally Othered—women, people of colour, poor people, old people, crips and queers—live lives of grace and agency. I want the world—and the visual and literary representations of that world—to behave as though we’re real people, not signifiers or metaphorical props: human beings in, of, by and for ourselves.
I grew up in the north of England where it was dangerous to be an out dyke—and I was always out. I was 4 when I declared I’d never marry a boy and over the last 50 years I’ve seen no reason to hide. To me it seemed so obvious it might as well have been tattooed on my forehead: my name is Nicola, I’m a girl, I fancy other girls.
It all seemed perfectly obvious and perfectly natural. Most of the world, of course, didn’t think that way.
When I was 21 I lived in a depressed and depressing city on what you might call, ah, the fringes of society. It was a hostile, physically dangerous place.1 And I was in a band: very visible. So a group of women formed a collective to learn self-defence. Once I’d learnt, I started to teach my community, for free. Then I discovered, to my unutterable delight, that I could get paid by institutions like the Equal Opportunities Unit, the Union of Catholic Mothers, and the Girl Scouts of America.2
Anyway, as a result—of being an out dyke and being paid to think about danger—I lived in the red zone a lot. In other words, I was not one of those writers who knew from age 5 I wanted to be an author. I didn’t go to college to study creative writing—when I was living in Hull I didn’t even know such a thing as an MFA existed.
It’s not a great leap from writing story songs to writing stories, and once I started writing fiction I found it addictive. It was at this point (I was 24 or 25) that I founded something called the Northern Dykes Writing Workshop.3 But didn’t think about formally studying writing til I was 27 when I applied to a 6-week residential workshop called Clarion here in the US. But even as I applied to Clarion I was so ambivalent about the idea of formally studying writing that I also applied to a 4-week women’s martial arts camp in the Netherlands. I didn’t know what I really wanted so I applied for both and thought I’d leave it in the hands of fate: Whichever accepted me first would win. (It never occurred to me I might not be accepted…)
Clarion said yes first—and gave me a partial scholarship, so writing it was.
Clarion has a reputation as a 6-week writing bootcamp that changes your life. I had no clue about that reputation; I knew nothing about it; I just saw an ad in the back of a magazine and thought: Hey, that sounds interesting…
But it did change my life. Clarion is where I met Kelley. Clarion is where I began the slow journey to thinking of myself as a writer.
As a writer it turns out that my primary joys are pretty much the same as those out in the real world. I’m very much a creature of the body.
I could talk for hours about what that means but instead let me read you something from my fifth novel, Always, the third in a triptych of novels about a woman called Aud Torvingen, a 6-foot tall Norwegian American.
[I read from Always. You can listen to me read a version here]
As living beings we are our bodies; it’s impossible to separate the physical self from the mental or emotional: the mind/body binary—Cartesian dualism—is rubbish. We experience the world, we learn it, through our bodies.
As a writer, I bring the reader into my fictional world through the characters’ physical, embodied, experience. What a character feels, what they notice of their world—and how they feel about it—tells the reader a vast amount.
Imagine an upscale Italian restaurant: polished marble (or stone composite) floor, open kitchen with chefs chopping things, one of those central fire pits with the hammered copper hood. Now imagine you’re a woman walking in with two small children. The first thing you’ll see are those sharp knives and open flames: dangerous for your kids. (Then, maybe, you’ll look at the menu and think, Huh, no fish sticks; they aren’t going to like this place…) But what if you’re someone who’s just been beaten in a hate crime? It’s probably that you’ll immediately focus on men with big hands or loud voices, or who have drunk too much and so seem unpredictable, or are wearing something—a particular colour of shirt of type of boot—that triggers memories of your assailants. But if you’re running for your life all those issues take second place. You dart in off the street and what you’re looking for is a hiding place, or another exit.
As a northern dyke teaching women’s self-defence if I’d gone somewhere like that restaurant (if I’d been able to afford it) the first thing I’d have done when I walked in is do a visual sweep for exits, defensible positions, and anything I could use as a weapon. And I’d pay attention to the people who represented potential danger. But that was then. This is now. I’ve changed. I’m no longer a women’s self-defence teacher living in the red zone. Now I’m a married, tax-paying, post-menopausal, disabled citizen of Seattle; for me the world is no longer immediately physically dangerous.
Now when I enter that Italian restaurant (assuming I can get in, that it’s accessible) I don’t look for exits and weapons; my focus has changed. If it’s raining will my crutches slip on that shiny floor? Are the chairs okay for my back? Can I get into the bathroom?
As people what we notice of the world depends on who we are. As readers, what we learn of a fictional world depends largely on the character experiencing that world. To show you what I mean, I’m going to read the beginning of most recent novel, Hild, which is set in north of Britain 1400 years ago
[I read from Hild. You can watch me read a version here.]
All my fiction opens with place. I funnel and filter the environment through the emotional lens of my protagonist. The 7th century was so different from our word, the 21st century, that I thought the best way to help a reader understand it was to encounter it the way a child might and learn alongside her.
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. I don’t care what most artists say, I think you can know us through our work (you just don’t know what bits you’re knowing). I bet, for example, that you could read one of Kelley’s books and one of my books, and within two minutes of meeting us you’d know who had written what.
Writing, then, is a weird mix of public and private. We write in private, we read in private, but the work itself is shared publicly: not only is the book available all over the world, and across the years, but criticism of the work is published in mass media, and the book is discussed in the academy, in book groups, and in casual conversation.
Books reflect who the writers are and where they are, physically and emotionally, when we conceive them. Mostly.
Late last year, two years after Hild was published, I finally read it. And I discovered an odd thing: there’s not a single crip in that book; not one. There are queer women, and men, there are people with different levels of power and access, people with different skin colours and different languages. But not one character with a disability. What’s that about?
I’ve been thinking about that. I was born a woman—female experience is embedded in my life and work. As far as I’m concerned I was also born a dyke—just about all my protagonists are queer. And I spent many years before and after starting to write being poor—it’s not surprising there’s lots of class awareness in my work. In other words, a whole matched set of Otherings—being a woman, queer, poor—came naturally to me. But being a crip didn’t. It’s taken me a while to wrap my head around it.
I was diagnosed with multiple sclerosis in 1993 but didn’t try to write fiction about it until 6 years later. That attempt was a novella, “Season of Change,” about a woman who, when she’s diagnosed with MS, thinks her life is over. It’s speculative fiction, so the metaphor is made external and concrete: MS becomes a literal monster who haunts/hunts the protagonist. It ends with protagonist’s epiphany: she can accept MS because she realises she’s different, not dead, and instantly feels better. I sold the novella for what was then, to me, a lot of money.
Publishing operates on geological time not human time—its pace is glacial—so there was a long pause between selling the novella and the intended publication date. I had lots of time to think about it. And the more I thought about it the more uneasy I got. The whole thing just felt…wrong, though I couldn’t quite put my finger on why. But that wrong feeling got worse and worse and eventually I pulled the novella—voided my contract—stuck it in a drawer and tried to forget it.
Fast forward eight years, to the third Aud novel, Always, in which Aud meets and falls in love with Kick—whom you met. Kick’s a stuntwoman, fantastically fit—there I was typing away, halfway through the book, when I realised Kick was about to be diagnosed with MS. I’d known she was sick but planned for the diagnosis to be something else and realised I was just kidding myself: she had MS. It was hard to write, but I did it, and I’m proud of the book—but as soon as Always was published I found I didn’t want to write anymore Aud novels.
I told myself it was a publishing issue4 but I suspect I just didn’t want MS in my fiction as well as my life. It made me feel too vulnerable, too exposed.
Then about three months ago I read an interview with two writers who work in disability studies who used the phrase narrative prosthesis. This is a term originally developed by David Mitchell and Sharon Snyder to describe literary or visual narratives that use disabled people as a metaphorical opportunity. Mitchell & Snyder tell us that traditional narrative arcs are built to restore the status quo. So crips in fiction are either eliminated (not unlike early queer narratives5) or fixed, by which I mean:
- we’re cured
- our ‘problem’ is overcome—and it is entirely our problem: nothing to do with the miseries inflicted by the built environment or ableist culture
- or we have an epiphany so everything’s magically okay now.
I read that and thought, Ah, shit: I realised what was wrong with “Season of Change:” the crippled protagonist has an epiphany in which she ‘accepts’ MS and thereby her MS is magically no longer a problem for her. I was ignoring the fact that being disabled is a problem not because of our impairment but because the world has a problem with our impairment. I was using MS as a narrative prosthesis.
This is the kind of beginner’s mistake I never made about women or queers or class even when I was a beginner. So it’s clear that when it comes to disability the writing me learns slowly.
But the writing me is finally ready.
I’m rewriting “Season of Change” and retitling it “Small Dog Theory.” Also, the novel I’m writing now, Menewood, the second book about Hild, has a variety of disfigured and disabled characters.
Now I have an expanded toolbox, tools I will wield with intent. And my intent, as I said at the beginning, is to change the world.
My aim as a writer is to persuade readers to recreate the characters’ experience inside themselves and, by so doing, invite them to consider those they’ve thought of as Other (people of colour; women; the queer, disabled, and poor) as real human beings like themselves. I’m norming the Other.
In art as in life crips don’t exist to be objects of others’ pity—or amusement, or tolerance. We are not here to teach or inspire anyone. We’re not signifiers or metaphorical props. We are people: human beings in, of, by, and—importantly—for ourselves
With my writing then, by re-imagining what was possible for us in the past, what’s possible today, and what could be possible in the future, I’m recasting what might have been, reinterpreting what actually is, and reshaping what will be possible.
I am inventing what I desire: a world where we are real people at the centre of our own lives.
1 I’ve written about the violence and other consequences of growing up queer.
2 Kelley and I once taught a memorable date-rape class in Georgia for a horde (it could have been as few as 35—but it felt like a horde) of tweens and teens and their mothers.
3 The Northern Dykes Writing Workshop was a peripatetic event held every few months in a different northern city such as Hull, Bradford, and Manchester.
4 There are three Aud novels. Each was published by a different publisher and given utterly different covers and flap copy and marketing focus: a recipe for disaster. I’m trying to get the rights reverted so they can be published properly but it will take time.
5 And is still happening. I’ve lost count of the number of lesbians who are killed off on broadcast and cable TV (though Autostraddle hasn’t).
7 thoughts on “Disability: Art, Scholarship, and Activism”
wonderful..love all you say and write, re reading Hild (again)…and Always. Now waiting on Menewood
This is another cogent and intelligent look at life and people. Thank you.
I’ve been reading your books for years, and re-reading them. Each time I do, as with this blog post, I learn something new or deep. Thank you.
@Joy, @Nanette, @Kate: Thank you.
Lovely insights! It’s really nice to be allowed a view on how your mind is adjusting to this new reality.
May I make an observation? You say:
“I’m rewriting “Season of Change” and retitling it “Small Dog Theory.” Also, the novel I’m writing now, Menewood, the second book about Hild, has a variety of disfigured and disabled characters.”
As disability is really 90% about perception, our perception in the eyes of others as less capable, worthy, valuable- disfigurement can’t be separated from disability. Whether or not the disfigurement results in any loss of function, the social consequences are the same.
@Altaira: Yes. That’s why I juxtaposed the two terms.
Beautifully expressed, enjoyed!
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