“Life is Too Short for Someone Else’s Shame”: Why I Call Myself a Disabled Writer
From 2008 – 2010, I lived for a time in Edinburgh, Scotland. One of the jobs I had while there was working in administration for an organization that provided support services to disabled people. I had started to be more open about my own disability, cerebral palsy, by that point in my life, though I hadn’t yet written much about it. One day my manager took me aside and mentioned that she couldn’t wait for the essays of mine that would one day come into the world.
“You’ll be known as a disabled writer,” she said. “And the insights that you have will be so valuable.”
“I’ll be a writer with a disability,” I said, instantly.
She just shook her head and smiled. “It’s the same thing.”
I disagreed with her, then. It took me years to understand why, and even more years to understand why I was wrong.
These years later, I now work for a literary festival in Canada. In this as well as my own work as a disabled writer, I’ve often encountered other writers who will talk about their disabilities in private but refrain from calling themselves disabled in the public space—in much the same way as I did in that conversation with my manager all those years ago.
As festivals, as arts organizations, we have a responsibility to ensure accurate representation of the disability community, which comprises roughly 20% of the population. But it can be hard to reflect that statistic when people don’t disclose. What happens, then, when you as an organizer know that you’re showcasing disabled artists—but only in secret?
To be clear: I don’t want people to disclose their disabilities if they’re uncomfortable doing so. I also want to acknowledge that it is often unsafe for many people to disclose disability publicly—from employment discrimination through to social discrimination, being open about one’s disabilities can often lead to further complications.
Instead I want to ask: what kind of world makes this discomfort possible? And what is it about this world that we can seek to change?
Part of the reason I was hesitant to call myself disabled was, for a long time, because of privilege. I am a white woman with mild cerebral palsy—I have a limp, and chronic pain, and all of this gets worse with fatigue. But I can also pass at times for someone who is able-bodied. I have a lot of non-disabled privilege even in spite of my disability, and for a long time I worried that claiming the word disabled for myself meant that I was taking space away from someone else who might deserve it more.
But what does this do, this assumption that there is only limited space for disability issues? It assumes that our concern for disability necessarily has limits—that there are some disabilities we’ll consider legitimate and others that we won’t. It also perpetuates the idea that disability is a niche interest—something that only impacts a few people with very specific conditions, when in fact disability is an incredibly wide umbrella. It covers conditions invisible and visible, mild and severe. It is a spectrum that touches almost everyone in some kind of way. Even if you live your life without a disability of some kind and are lucky enough to grow old, chances are you’ll encounter disability in some form as you age.
In refraining from calling myself disabled, I was perpetuating the idea, however unconsciously, and even in spite of my good intentions, that only a few people “deserve” the disabled identity, and thus only a few people deserve the accommodations that are a necessary part of thriving. This perpetuates the ableism that continues to disenfranchise disabled people in the first place, and reinforces the idea that disability issues do not affect or impact non-disabled society—because they only impact a few.
But that conversation with my manager those years ago also took the shape it did because I worried, at the time, that putting my disability first would somehow make me less—because I saw my disability as less. I saw writing about disability as niche, as not as interesting as writing about other things—because I saw disability as a niche interest, a single bookshelf in the bookstore as opposed to something that is, in fact, a universal consideration. In the community, this is what we call internalized ableism—the ways in which the ableist views of the disabled body as less-than weave and wind themselves through the disabled person’s understanding of society. It took a few more years of growth and understanding of my own disability and needs—as well as the gentle guidance of my disabled peers and fellow disabled writers—before I realized that my hesitancy was complicity, and that a significant part of my journey toward disability advocacy rested in claiming the term disabled for myself.
It took yet a few more years of growth after that to understand that there is no hierarchy when it comes to disability—that we are all of us entitled to what we need in order to thrive in the world. As a physically disabled woman who also has non-disabled privilege and mobility, the space that I occupy is different from that of a disabled person who might use a wheelchair, or have invisible disabilities. Accordingly, the accommodations and assistive devices that I need will be different from the accommodations that others might require—but all of our needs should be met regardless. Occupying my own disabled body and navigating my own disability challenges does not take away from or overshadow the needs of others—we need to make space for them all.
What does this mean, then, in public spaces? It means that I put cerebral palsy in my Twitter bio; when I go to festivals and speak at events in person and online, I call myself a disabled writer. I do this because I know that even though I am perfectly capable of talking about other things when it comes to writing apart from disability—ask me about structure, and world-building, and what kind of research one might need to do when writing a strange centaur novel—the fact is that my disability has influenced everything I write. I am who I am because of my disability and how it’s shaped my life, and I want the world to know this.
In calling myself a disabled writer, I also want the world to know and recognize that many aspects of disability—though not all!—are caused by the built environment, and that environment is a reflection of certain choices and decisions. We have the technology and the infrastructure to ensure an accessible environment for all who need it—the barriers to this are social more often than not. Just look at the ways in which accommodations that have long been fought for by disabled people—such as working from home, grocery delivery, and flexibility with class schedules and assignments—became available almost overnight for the majority of the population in the wake of the COVID-19 crisis.
So much of the world we live in is built on a “one-size-fits-all” approach, with the understanding that those who do not fit into this system must get left behind. But what happens when we say this isn’t good enough? What happens when we build a better world?
When I call myself disabled, and when I encourage those who are ready to claim the name for themselves—in much the same way that my fellow disabled writers once encouraged me—I am reaching for that world. The one where we all understand that there is no one-size-fits-all—that bodies come in different shapes and sizes, with varying levels of ability, and that it is our responsibility to meet all of these bodies in whatever ways we can. When I say that I am a disabled writer, I am saying that I do not think disabled is a bad word—that I can speak about disability in writing as well as a hundred other things. I am saying that disability has made me a better writer, because it keeps me alive to the ways in which the world treats those who are different, and reminds me of the ways in which I can use my words to fight for a world that is better than the one we have. And I am encouraging my fellow writers who might not yet be at that point to consider what it likewise might mean for them to claim the same.
When I call myself disabled, I am saying that the disability community is wide and bright and beautiful, and welcoming of all, and that we become stronger with every person who joins us. I call myself disabled so that others with disabilities across a wide spectrum might one day feel comfortable doing the same.
Because life is, indeed, too short for someone else’s shame.
Amanda Leduc is a disabled Canadian writer and author of the non-fiction book Disfigured: On Fairy Tales, Disability and Making Space, as well as the novel The Miracles of Ordinary Men. Her new novel, The Centaur’s Wife, is forthcoming from Random House Canada in February 2021. She has cerebral palsy and lives in Hamilton, Ontario, Canada, where she serves as the Communications and Development Coordinator for the Festival of Literary Diversity, Canada’s first festival for diverse authors and stories.