Opinion | Rewriting the Old Disability Script

Story creates culture. It teaches us to feel, think and behave in ways generally approved of by those around us. Story conditions us. This conditioning, or bias, is not always visible to us, but it constrains and guides our behavior. Implicit bias can’t be changed until we learn to see the old, embedded story and then find a new and better story to overwrite it.

I am a queer, disabled writer who grew up Catholic in the north of England at the fulcrum of two competing stories. In Yorkshire, even more than 400 years after the reign of Henry VIII, Catholics were a small, feared and embattled minority — as a 9-year-old I was spat upon in the street for raising money for a Catholic charity. It was confusing because to me, my family, friends and teachers (mostly nuns), Catholics were Good, the norm. Out on the street, and to our neighbors, Catholics were Bad, other. So I was aware of dueling cultural narratives, and this, perhaps, is what inoculated me against other cultural stories — though only partially.

When I was very young — 4 or 5, before I was fully sexual — I knew I was a girl who liked other girls. I didn’t really think about it — it just was, utterly obvious. It seemed perfectly natural to me because no one thought to talk about sexuality to a 4-year-old, and queer people — and their treatment by society — was invisible to me. So I was free to tell my own story: that I was amazing, and that if I fancied girls, then fancying girls must be amazing, too.

It wasn’t until I was 9 or 10 that I found out that the dominant story of queerness — as told by family, church, school, neighbors and books like the tortured 1928 lesbian novel “The Well of Loneliness”was that it was Bad. But by then I also had experience of the cultural story of Catholicism being not entirely true, so it wasn’t too hard to counterprogram anti-lesbian bias with my own, better story. As a result, I did not develop internalized homophobia — or thought I hadn’t.

Then, when I was 15, I went with my first girlfriend to a gay club where, for the first time, I saw two men kissing and felt instant and visceral revulsion. I was appalled. This was ridiculous: a homophobic lesbian! I had spent the past 10 years counterprogramming anti-lesbian hate but hadn’t thought to do the same for gay men.

I was determined to change that, and I could because I now had access to a countervailing story. I went back to the club night after night for a month until a new story — This is just what some men do; it’s fine overwrote the old.

I write novels, and the fiction I create comes from who and where I am emotionally and physically. My main characters are queer women, and because I’ve never associated being queer with emotional struggle, my characters’ bodies are sites not of difficulty but of delight. The protagonists are queer but the story isn’t about being queer because to me, queerness isn’t interesting; it’s an old story.

But disability was different.

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. No one explicitly told me that disability was Bad; they didn’t have to. The bias was pervasive and implicit. I did not learn to defend against or counterprogram that ableist story. Instead, I absorbed and internalized it.

I learned I had multiple sclerosis 25 years ago. Perhaps because my physical impairments gained on me slowly, it took me years to feel the sting of nondisabled people’s dismissal. It took me years to begin to understand that I had been dismissing my disabled self — years to recognize the ableist narrative I’d absorbed — because I had nothing to contradict it.

As a child, I saw no disabled women — queer or otherwise — in real life or on page or screen. When disabled characters finally began to appear in books and on screen, they were caricatures: tragic cripples, angry cripples, helpless cripples, one-dimensional characters whose bodies were portrayed as sources of disgust and despair. These stories were written by nondisabled authors; they reinforced the ableist narrative because that’s all they knew, it’s all they could imagine: How terrible it would be to be disabled!

Disability fiction today is in roughly the same place queer fiction was 70 years ago or more. Imagine if all queer fiction today were as depressing as “The Well of Loneliness.” Then imagine that most disability fiction is worse.

Actually, you don’t have to imagine. Last year, the writer and disability activist Kenny Fries formulated a test for disability in fiction. It’s based on the Bechdel Test (which asks whether a work of fiction or drama features at least two women who talk to each other about something other than a man). The Fries Test asks: “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?”

To pass the Fries Test, a novel’s disabled characters do not have to have names or talk to each other at all — never mind about something other than disability. It is a very low bar. Nonetheless, in late 2017 I put out a call on social media for book-length fiction for adults that might pass the test. After many months, and input from hundreds of readers, I have a list of 55 titles. Of these 55, some are old, some out of print, and a handful not in English. So let’s call it an even 50.

This is a shocking result. According to the Stanford Literary Lab, there are about five million novels extant in English. And according to the most recent figures from the Centers for Disease Control and Prevention, one in four people in the United States are disabled. For stories that pass the Fries Test — to offer at least a reasonable chance of not being ableist narratives — to proportionally represent the experience and reality of the American population, the number of novels on my list should be 1,250,000.

One and a quarter million. And we have 50.

Think about all those stories that are missing. Stories that we need to overwrite the corrosive narrative of ableism. Without those stories, the implicit bias will continue and the cycle will renew itself endlessly. We changed queer literature, and the world, with story. We can do it again. We can write those stories in our own voices, our strong, beautiful, ordinary, disabled voices.

Nicola Griffith is the author of seven novels, including, most recently, “So Lucky.”

Disability is a series of essays, art and opinion by and about people living with disabilities. Previous essays in the series can be found here. Follow The New York Times Opinion section on Facebook, Twitter (@NYTopinion) and Instagram.

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