Ben Elwy
Sometimes I think about what the hardest part of living with a disability is. It’s an extremely broad question; disabilities can range from scoliosis to dyscalculia to depression, among countless others, and no two people with the same condition will have the same experience. Speaking for myself, though, I think the hardest part about living with a disability is facing the biases that people often hold. My experiences with Schwartz-Jampel Syndrome are my own, not necessarily representative of anyone else, but I still hope my thoughts can provide people with another perspective on building an inclusive world.
The type of bias that I usually think of first is the negative one, which I’ll use the broad term “ableism” to describe. While it’s true that the United States has passed laws prohibiting (for the most part) discrimination against disabled people, no set of laws will cleanly erase a way of thinking entrenched by millennia. Ableism doesn’t need to be intentional, and in fact, the discrimination that I encounter is more frequently subconscious and subtle than purposeful and dramatic.
I vividly remember, several years ago, leaving a neurology appointment at Massachusetts General Hospital when a stranger came up, handed me a book of Christian prayers, and left without a word. I made a very puzzled expression. “I don’t even believe in this stuff!” was my mental reaction back then. “Okay, hold it, did my walker really just convince you that I should be praying for salvation?” would be a little more like my reaction now. I appreciate that this person meant well and was following his beliefs, but he made a heavy assumption about the value of my life from the single observation that I used a mobility aid.
That kind of unintentionally harmful interaction happens to me on an almost daily basis. I’ll be walking towards a door, just about to press the open button, when someone rushes over and pushes the door open for me. Actually, they only make things harder, because now I have to squeeze my walker past them, offering an awkward “Sorry, thank you!” as I inevitably crash into their feet on my way through. Why is that button there if not so that I can be independent? Or a stranger will come up to talk, which has a reasonable chance of ending badly. If I’m unlucky, either I’ll get the baby treatment (“Heeeey buddyyyy, hoooow are you dooooing?”), they’ll pat me on my head or shoulders, or if I’m with someone, they’ll ignore me altogether and talk to the person I’m with like I’m not there. I’ve had one peer ask me (when I was on campus, wearing my student ID around my neck) whether I was a fellow student; I’ve had another ask me whether I knew what this obscure instrument called a “cello” was.
As much as I wish these examples were the result of misunderstandings, I cannot logically imagine these situations ever happening to someone without a disability. Again, I’ll never fault anyone just for meaning well. People do what they think will help, but because ableism doesn’t have the concreteness and tangibility of forms of discrimination like racism and sexism, awareness of the subtle harm in these actions rarely spreads. And because these actions aren’t usually considered harmful, they remain widely unchallenged, and are arguably one of the last forms of discrimination to be socially acceptable.
If you happen to be feeling uncomfortable right now, don’t distance that feeling from yourself. Embrace it, think about it, and remember it in the future. I don’t mean to criticize any individual, but instead the societal norms that limit disability awareness. In fact, I struggle with my own internalized bias against disabled people. I grew up in a very accommodating public school system, but one where the only other person with a physical disability was my friend since third grade, where many of the people with intellectual disabilities were in a separate program so that I rarely saw them. Coming to college and discovering an entire group of disabled people to connect with was a learning experience. That’s why I’m sharing my experiences with bias, so that people who may not often meet disabled people can reflect on any preconceptions—including their preconceptions of people with invisible disabilities, an extremely overlooked topic.
So that’s an overview of some forms negative disability bias can take, but what if we move in the less obvious direction along this spectrum to positive disability bias, the act of being inspired by someone because of their disability? Judging by that description, it sounds constructive, and I’d agree. But in extreme cases, I’d argue the exact opposite, that it’s degrading in a way often masked by its friendly appearance.
We’ve all heard about people who have been paralyzed in accidents and go on with their disability to become Paralympic athletes, or about individuals like Stephen Hawking who accomplish extraordinary things by any standard of ability. These are fantastic role models. But we also may have seen social media stories about a blind person going for their morning walk with a smile on their face or an autistic high school senior participating in graduation. These may, in some cases, be impressive people. But are they necessarily role models just because they’re disabled?
One day in elementary school, I was walking with my mother past the cafeteria, and I happened to make ordinary eye contact with an adult. They smiled at me. “Why did they smile when I looked at them?” I asked my mother, confused. She responded that it was because I was so cute. Which may have been the case back then, but I’ve continuously noticed this phenomenon, even among others my age, since that day. I won’t rule out the possibility that these are people who genuinely smile at everyone because they’re kind, but I can’t bring myself to fully accept that answer. I’ve come to an understanding people often smile because they see me fast-walking and doing tricks with my walker, as I do every day, and they feel uplifted that I’m so “upbeat, despite” my disability. Some people who oppose this kind of extreme positive bias call it “inspiration porn” in its social media context, because it objectifies disabled people doing everyday activities as a source of motivation for abled people, while also
falsely implying that disabled people are all the same: heroes with infinite resolve, limited only by themselves, who can do anything if they only “try hard enough.”
I’m not a “hero” for living with my disability, and no, that’s not modesty. I want to live my life and play video games and pursue my interests, and I think anyone permanently in my position would do the same. I don’t complain about surgeries after forty-seven of them and plenty of admittedly painful times, and while I’m more resilient than some people, no, that’s not stoicism or “strength”—because what does complaining out loud accomplish when doctors are working to help me, and I just need to eat, take pain meds, and sleep to become healthier than before? I’m not a tirelessly cheerful person who cracks jokes when things look tough, because no, I’m not a character from a Saturday-morning cartoon. I hide it, like most people do, but I have my limits. I’ve experienced my share of emotional breakdowns alone late at night. No, I’m a person.
To be clear, I don’t believe any of this is a black-and-white issue. No one should control what inspires another person—for transparency, my biggest inspirations are video game characters: a fifth grader struggling with depression named Geo Stelar, a defense attorney named Apollo Justice, and an archaeologist named Professor Layton—and it is never “bad” to simply be inspired by a disabled person doing normal things, because they can be inspirational like anyone else, and people need inspiration. At the same time, we need to distinguish why a disabled person inspires us, and how that inspiration influences our perception of disability. Each individual must answer these questions for themselves.
In summary, then, I believe there’s a spectrum of generalizations and biases about disability, ableism on the negative end, objectification and over-idolization on the positive. This scale reminds me of the myth of Daedalus and Icarus, in which Icarus must escape over the sea on artificial wings made of feathers and wax. His father Daedalus warns him not to fly too close to the sea, lest the moisture weigh down the wax, or too close to the sun, lest the heat melt the wax. Icarus doesn’t listen, of course; he flies too close to the water, notices his wings becoming wet, and in panic, overcorrects by flying too close to the sun. Icarus’ wings disintegrate, and he falls back into the sea.
I’d argue that by emphasizing the importance of maintaining a middle path, the myth of Daedalus and Icarus provides a helpful framework for considering and addressing disability bias. If the sea represents ableism, and the sun objectification through extreme and unwarranted praise, we need to fly a course through the middle of the sky. It’s not easy. The gravity of thousands of years of misconceptions and stereotypes inevitably pulls us down towards ableism, intentional or subconscious, and when we discover that our wings are waterlogged, our natural inclination is to pull up towards the sun to dry ourselves out. But maybe we misjudge our trajectory, and in our effort to avoid traditional discrimination, we instead adopt a different kind, one that reduces disabled people to their everyday actions that are seen as heartwarming and heroic. We may end up down at the sea that we thought we left behind.
To change this situation, we need to start small by changing ourselves. I believe that we’re already on course to our destination, and that we have everything we need—everything except a map, that is. We know how to steer. These are incomplete, ongoing processes, but people are working to create more dolls that kids of racial minorities can see themselves represented in, and people are trying to create an environment in which scientists who are women are no less respected than scientists who are men. We know how to identify obstacles in flight. Awareness about discrimination based on sexuality and age, for example, has started to take hold relatively recently. But we need to learn to combine these two skills, to outline a middle path between sea and sky that acknowledges and addresses disability bias. We need to learn to learn. We need to learn to talk with disabled people as people, without awkwardness or excessive caution in choosing words. And I hope disabled people who feel comfortable will encourage people to ask them questions. I don’t see any revolutionary policy reform addressing the omission of disabled people from conversations about universal respect, equal treatment, and intersectionality. I see a solution that starts with each and every one of us, myself included, in which we actively learn about disabled people and treat them as we already treat people. We’re making progress with discussions about race, ethnicity, gender, sexuality, religion, immigration status, and marital status, among many others, and I trust we can do it with disability too, not instead of other movements, but along with them.
In Mega Man Star Force 2, Geo Stelar’s second appearance, Geo’s mother offers him advice about carrying the heavy burden of responsibility. She remembers something that Geo’s missing father once explained: “Whether I succeed or fail, it doesn’t matter; it’s whether I have the courage to try. Even if I should fail, my courage might inspire someone else to try. And even if that person fails, their courage will inspire the next one.” I don’t expect that people will eliminate disability bias soon, or maybe even ever. It’s ingrained in our cultures, and only an extraordinary event would change that. But I believe what people need to learn as they chart their flight is that that doesn’t matter; the cultural grounding of discrimination is true, but irrelevant. What appears like an insurmountable societal problem is an issue we each have power over, one that we can and must work together to solve, with no group opposed to another. But under such a heavy burden of change, what matters is that people go out and try, starting with, but not stopping with, something as small as a single conversation. That’s when others try along with them, and that’s when we create possibility. Our flight to the horizon can waver, as long as it always aims straight.