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I’m an expert at working sideways. You need to be, when you’ve spent six months immobilized on your side swinging a Wii Remote.
Let me back up — I’m disabled. I’m a “Percy Jackson” addict, a language nerd, and a believer in vanilla ice cream, and I’m also disabled. Disability is not a monolith. The definition spans everything from depression to dyslexia, and no two people experience disability the same way, even if they have identical conditions.
But for myself, “I’m disabled” means Schwartz-Jampel syndrome, a rare neuromuscular developmental disorder that, among other effects, has made my muscles permanently contracted, has caused me to become legally blind, and has gifted me with a walker to glide down slopes with (zooming out the front entrance of the Science Center is always a highlight).
Yet equally, on reflection, it has given me a twofold perspective on life. It’s the perspective of someone who moves but cannot walk; looks but cannot see; talks but cannot be understood. It’s the story of someone born a stranger struggling to belong, at Harvard and in the wider world. And while I only speak for myself, one of the more than a billion disabled people globally, these are experiences that I know many others can relate to. The narratives of disabled people are too often absent from conversation, despite their intrinsic and intersectional importance — when’s the last time you heard disability mentioned as more than an afterthought? I only hope my individual story can begin to fill that gap.
When I was seven, I underwent major hip surgery that left me unable to sit or stand for six months. To keep me active during that time, my surgeon recommended that my parents buy a Nintendo Wii. Through my disability, I discovered video games.
And that they’re hard.
My first game, “Wii Sports,” was designed as a casual game for all audiences. Even still, as a complete novice to video games, developing the needed hand-eye coordination posed a challenge. Compounding my difficulty, however, was that I was lying on my side, viewing the TV at a 90-degree angle.
There’s a common-sense concept in video game design: The player should be challenged by the game’s intended obstacles, not by unintended complications. This principle is crucial for ensuring that games are fun and fair; the player should feel that their mistakes are their own. However, when I threw my bowling ball and it ended up flying backwards, hitting the audience behind my character, it wasn’t because of my lack of skill. It was because of my circumstances. I was lying on my side, playing in a way the game wasn’t meant to be played, and I was stuck in that position.
Living a disabled life means living life at a 90-degree angle, halfway in and halfway out, fighting the design of the world around me as much as the challenges placed in front of me. In my first semester at Harvard, I comped a service organization. I was excited, as first-years are — until I learned that you were only allowed to do the work in an inaccessible location. I requested a reasonable accommodation, but that conversation went nowhere. When I passed the comp, I was officially a member, yet all I could do was watch everyone else from the sidelines. My excitement vanished, replaced by a familiar dejection and the realization that Harvard was no different than anywhere else I’d known.
It doesn’t need to be that way; after all, our surrounding environment can change. In that same semester, I attended a course fair. I physically can’t raise my voice, and the room was so crowded that I couldn’t make myself heard. But instead of sending me away, the professor I was trying to talk with gave me her email and told me to contact her. And when I took her class, she offered to personally show me how to navigate the building. I felt like I belonged.
By every aspect of its marginalizing design, disabled people aren’t meant to exist in this world. Yet throughout this column, as I explore what makes me feel like I don’t belong in this world and what reassures me that I truly exist, I’m not asking for pity. In fact, I can hardly think of anything I want less (except rewatching the “Percy Jackson” movies, they’re awful). Instead, as I untangle my experiences of living a disabled life, I hope for discussion, for awareness of how our actions can impact the disabled people invisibly forced to the edges of our communities — and I hope that no matter how crowded of a room as Harvard is, my writing can speak louder than my weak voice, announcing, “We’re here.”
After all, I eventually learned how to bowl a strike, even while lying on my side.
Ben Elwy ’23 lives in Quincy House. His column “Living a Disabled Life” appears on alternate Tuesdays.
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