“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?“
In other words, can we not treat disabled characters like plot devices to evoke pity or sympathy, and instead have fully articulated disabled characters who have plots of their own, informed by, but not bound to, their disability?
It’s a good question to ask an age where even resources for writers are inaccessible. We have built a society where affordances are bolt-ons, not fundamental design decisions. Even well-meaning people, through lack of attention — or care, at times — work to exclude.
A few years ago, Nicola Griffith, who was diagnosed with multiple sclerosis in 1993, came out as crippled.
Today I’m coming out as a cripple. I’m not talking about acknowledgement of physical impairment but about claiming identity as a crip.
She compared the statement to both coming out as a lesbian and claiming her identity as a writer. In all cases, the choice of coming out clearly delineated her public identity — and although she never hid the effects of MS:
I have also regarded my MS and its consequences as a tedious, time-consuming thing Over There, separate from my real life. My illness, I reasoned, was a personal difficulty that took a lot of bandwidth to mitigate; why give it any more attention than necessary?
While that blog post was one part of her coming out, her new novel, So Lucky, released today by FSG, can certainly be read as another. It is a novel, to be certain, but it is also a manifesto and outreach, a truth-telling of the personally devastating effects of being diagnosed with such a life-changing illness.
So Lucky is the first-person narrative of Mara, a tenacious woman, a fighter (literally, a martial artist), and the executive founder of a powerful AIDS nonprofit. On the first page, her wife leaves her for another woman. On page nine she receives a diagnosis of multiple sclerosis. Her life begins a radical shift, as her body, once a known entity, begins a metamorphosis into a frustrating, and dangerously painful, unknown.
Mara — like, one suspects, Griffth (although one is also cautious about assigning a character to her author) — is unneveringly tenacious. She faces adversity with a growl and middle finger. She is a woman who makes things happen, and she will be damned before she's sidelined by MS. This leads to inevitable fails, told in prose that snaps as sharp as two hands slapping together. And like those hands, the text leaves behind a warmth on the skin that pulls you into a deeper understanding of Mara’s experience.
“Understanding” — what a loaded word, so much a cliche today. But look at what Coleridge said it was: “the power of dealing with the impressions of sense, and composing them into wholes.”
That’s a good description for Griffith’s prose: her deliberate phrasing, stripped so often of connective tissue, so that it is exposed nerve, raw and vital.
Early in her diagnosis, feeling pretty good, Mara decides she needs a workout. She goes to her dojo.
I nodded and stood, balanced and sharp as a jewel, ready to dance the karate kata while Bonnie acted as my opponent. I took the open-ready pose, breathed out, and began the slow-motion sink to a squat that would turn into the explosive first move. Make it feel like butter sliding down the hot steel of a coiled spring, Bonnie had said when she first taught me. Down I went, and down, oiled and smooth, feeling the muscles in my calves and thighs, in my ankles and the base of my toes, gathering. I started the inhalation. And when your lungs are full it’s like that spring covered in butter just slips loose and you FLY up and out with the ki-ai, the karate shout. I leapt with forearms crossed to block Bonnie’s downward blow, and it was as though my smooth buttered spring had rusted — it gave under the strain, just broke — and I faltered and jerked, and half blocked Bonnie’s fist with my fingers.
My hands dropped to my sides and swung there. We looked at each other.
She walked around me twice, and stopped. “What’s going on?”
And I didn’t know how to tell her, how to open my mouth and say: I am sick and possessed by disease and this thief is stealing my life.
“It isn’t me,” I said. “It’s multiple sclerosis.”
Her body didn’t move, but her face changed, I saw it, a shuttering and turning away, just before she laid a hand on my arm and said, “I’m sorry.”
“It’s just that one move,” I said. “I can do the rest.”
“Sure,” she said, but her smile was mechanical, the kind she gave her students — the not-real people — and twice while we worked I saw her glance up at the time. My face felt as white and hard as the clock’s.
What Mara says there, “it isn’t me,” is central to this book. The thing is, it is her. On her post about coming out, after she talked about not giving it any more attention than necessary, Griffith said:
I came to think of this stance as the Small Dog Theory of illness: keep the irritating, yappy little hairball fed and watered and it won’t annoy you as much.
The Small Dog Theory is a load of rubbish.
The Small Dog theory plays a central role here, a metaphor made flesh for Mara to grapple with. Moving through the book, she grapples with a lot — Griffith is not easy on her heroine, knowing just how far she can bend before snapping in two. There is the diagnosis, the gone wife, the romantic interest, the loss of agency and worries over health care — and then, there is something darker at work here, something that gives truth to the lie of toughness: fucking tough covers fucking tender. And tender is the playground of fear.
The book is, of course, more than illness. It is Mara facing the darkness and shadows. It is more than Mara, at times, even as tied to her as it is. It is a humane story, of bravery and coming to terms with the darkest parts of oneself. There is little else left to do, when you are alone with a new uncertain body, at times in debt of a world that doesn’t show you so much as an inkling of care.
The multiple sclerorsis is what forces Mara — because it limited her operating bandwidth to a narrow, focused beam — to face the truths she so ably ignored in her previous life.
On Twitter Griffith has helped start #criplit, a series of hashtag conversations for, and about, disabled writers. They’ve covered a number of topics, including advice and information about including disabled characters in your fiction.
This is one of those before-and-after issues, where you — if, in fact, you were like me and less aware of these issues before starting the book — start evaluating every other book based on these criteria. Because once your eyes are open, the lack of disabled characters seems downright strange, held up to the world we live in. Fiction should reflect us and who we are, and when we notice instead that it reflects our prejudices or default assumptions, it is up to us to challenge them.
Griffith has a list of books that pass the Fries Test. Maybe this is projection, but it seems that in her work collecting these titles, perhaps noting the shortness of the list compared to the endless shelves of novels in the world, maybe Griffith thought that perhaps she better show us. Maybe she should take some time away from writing the next Hild book to put the thing that she was looking for into the world. To say “Here’s how it’s done. See how easy I make it look? Now, you can do one too.”