On Disability and Stories
Image description:
Rowan, a white woman with curly brown hair, is in side profile. Her hearing aid is propped on top of her ear for visibility.
I’m hard of hearing. This is something I was only diagnosed with recently. I tend not to broadcast personal information, but I don’t shy away from sharing when the situation calls for it. I have a reason for sharing today, and that reason is stories.
Let’s start by acknowledging the fact that I’m very fortunate. I have good health insurance and am gainfully employed at a living wage, something one out of three disabled people can’t claim. Aside from my hearing loss, my chronic illnesses aren’t visible, which means I haven’t experienced the discrimination that others have. For most of my life, I didn’t even know I was disabled. The mindset of my second-generation Italian immigrant family was that having a chronic medical condition or mental health disorder was a stain on your character. You didn’t talk about it. You hid it, pretended it didn’t exist, even when it was staring you in the face.
But I am disabled. Rather than being weak-willed, lazy, or inferior (as I’d always believed), my body is simply not made normally. It was a relief to accept this, yet I was hesitant to claim disability as an identity. I didn’t think I’d earned it. I worked in disability research, education, and advocacy for years alongside people who experienced housing and employment discrimination, chronic barriers to accessibility, everything from infantilizing to outright violence. How could I legitimately take a seat alongside them?
Lucky for me, there are a wealth of disabled writers, speakers, activists and influencers (think Alice Wong, Rebekah Taussig, Elsa Sjunneson, Brie Halbers, and Chella Man to name a few) who taught me that disability isn’t a monolith. Internalized ableism is a thing and invisible disabilities not only count, they bring their own unique set of living challenges. I’m fortunate to work in a career field where disabled bodies are the norm. I’m fortunate to have begun the process of acknowledgment, awakening, and acceptance before being diagnosed with hearing loss. When I got the news, it caused me no grief. I didn’t feel self-pity or a sense of mourning. I have many people to thank for that perspective shift, but I wouldn’t always have reacted this way. Therefore I don’t fault well-meaning people when they respond to the fact that I’m hard of hearing with, “That sucks,” “I’m sorry,” or a sympathetic knitting of the brows. That used to be me. We, as a society, just don’t know any better.
But we can, and we should. We have an opportunity right now, within this cultural climate and upcoming generation, to shift the narrative on what it means to be disabled. Media, stories, entertainment and fashion—everything that makes up our culture teaches us to believe that having a disabled body is a loss. We absorb the message that disabled bodies are undesirable, inferior, unattractive, burdensome, asexual, pitiable, even comical. Disability is something to overcome, and those who go about living normal lives and accomplishing normal things are viewed as admirable, inspirational, brave. I’m doing nothing but parroting words that others wrote before me, but my point is this: If we keep telling stories in which disabled people are unhappy about being disabled, we perpetuate the idea that Disability=Tragedy. If stories tell us that Avatar’s Jake Sully isn’t fulfilled until he can walk again, if Me Before You’s Will Traynor would rather die than live as a quadriplegic, if hypotonic Steve Rogers can’t be a hero until he becomes Captain America, that’s the only truth we know. If every disabled character is a sidekick, comic relief, or has a tragic backstory, those are the expectations we’ll keep harboring.
What if all disabled people weren’t sad about being disabled? For ages, the Deaf community has viewed themselves as a linguistic minority but NOT as disabled. In my experience, children with genetic or congenital disabilities don’t see their bodies as flawed until the world teaches them differently. What if we wrote characters who were badass and disabled, not badass despite being disabled? One example I’ve latched onto lately is Leah Bardugo’s Kaz Brekker of Six of Crows and Crooked Kingdom, adapted for the Netflix series Shadow and Bone. Kaz is the ruthless young leader of a crime syndicate and is also mobility impaired. Does Bardugo approach his disability by ignoring or downplaying it? She doesn’t. Does she make it a source of resentment for Kaz and create a dramatic backstory about it? Absolutely not. Kaz is angry and vindictive and damaged, but that has nothing to do with his leg. Sure, he gets annoyed when his pain flares up—that’s real—but he doesn’t wallow in self-loathing and he certainly doesn’t let it derail his plans. His cane is a symbol of his power, and he’s an absolute force to be reckoned with.
I’m curious: Do you know of other well-written heroes/anti-heroes who also happen to be disabled? Or are they mocked (Tyrion Lannister), do they dream of being able-bodied (Charles Xavier), or have tech that neutralizes their disability (Star Trek’s Geordi)? What if disabled characters could be awesome without being defined by their disability? What if we started normalizing disabled bodies in our stories, our screenplays, on billboards and runways and in social media posts? After all, twenty-five percent of us will experience disability at some point in our adult lives. What if art and stories could change how people view themselves?
My point is, they can and they do. We’re all capable of wielding that power, though some of us are heard more readily than others. I hope your voice finds an audience, and that you’ll use it to change the narrative about something that matters to you.
