'I want to start conversations': Why author Michelle Butler Hallett writes about disability
Listen to a reading and interview with the acclaimed novelist on Atlantic Voice
Michelle Butler Hallett's novels span centuries and countries — and win awards, too.
The St. John's writer scooped up a $30,000 Atlantic Book Award for her latest novel, Constant Nobody, in 2022 ("I was gobsmacked," recalled Butler Hallett, saying the prize has given her freedom and time to pursue new writing projects).
But when Butler Hallett decided to write a very personal story — her experience as a disabled person, and how the world sees her — she found a whole different beast than fiction, and a much more vulnerable one.
"I found it a lot more difficult, because the topic is something that was so close to me. It was really hard," she said.
The resulting essay, You're Not Disabled, Disabled, appears in the anthology Land of Many Shores: Stories from a Diverse Newfoundland and Labrador. In the essay, Butler Hallett traces the ins and outs of her autoimmune disease, ankylosing spondylitis, which causes her mobility, pain and fatigue levels to fluctuate day to day.
She read from her essay and spoke about her experiences on CBC Radio's Atlantic Voice.
This interview has been edited for length and clarity.
Q: The title of your essay, You're Not Disabled, Disabled — can you tell us why you chose that?
A: It didn't really come from any one instance, as much as a whole bunch of feelings and reactions I got. That when I started to use crutches, for example, people stared at me, wondering why I needed them one day, or I only needed one another day, or on a good morning, I could limp around the office just fine.
I quickly learned that there is this binary idea of disability. That I was expected to be either completely disabled and nigh on helpless, or able to do just about everything. There was no room for nuance, and because I'm not using a wheelchair, there was also a sense of well, you weren't disabled. And I'm thinking, I have terrible trouble walking and moving. What, this doesn't count?
So that got me thinking a lot about people on the outside looking at a disabled person, and what they might be thinking and what's been driving them. And who gets to define what disabled is? Who gets to tell me I don't deserve to use a blue [parking] spot on a bad day? Who gets to tell a wheelchair user that it's just too bad if the elevator is broken, that it is somehow an inconvenience?
How could we better build empathy as a society? Do you have any ideas?
I do. The first one is going back to, again, the idea of of judging someone else. I mean, we get taught this no matter what our upbringing or our religious background. You know, don't judge other people unless you want to be judged yourself, right? So, if we start thinking about so much of disability as a cultural phenomenon… I've got a terrible, painful spinal disease which affects my mobility. Yes, that disables me. What also disables me is, say, the MUN [Memorial University of Newfoundland] campus with broken elevators sticking a sign up there saying "Sorry For the Inconvenience" is not good enough, because it's only an inconvenience for somebody who can easily take the stairs.
Let's think about vision correction for a moment. How many of us are wearing glasses, contacts or have had Lasik on our eyes? Many of us, if not most, right? Without vision correction, some of us would be profoundly disabled, because we can't see further than the end of our noses. Yet in our culture, where glasses, contacts and Lasik are done on a profit model, bad eyesight is no longer a disability. Do you see the the difference I'm getting at?
But if ramps and working elevators as a priority were as normalized as glasses and contacts are, we'd be getting a lot further along.
You know you're an acclaimed novelist. And you put it right there in your author's bio that you're disabled. I'm wondering why it's important for you, to put that in there, put it out in the world and have that as part of your bio.
In an attempt to normalize it. Also, in an attempt to hang on to whatever sense of empowerment I may have gotten, and to remind me not to allow the lifetime of internalized ableism to govern my thoughts. My being disabled, to me, is as much a part of me as my green eyes. It just — it is, right?
And it matters to me because I want to start conversations. I at least want people thinking, "Oh, she doesn't use a wheelchair. How come she says she's disabled?" You know, things, like that. It's about lighting sparks and poking people, I guess.