One of my favorite feelings in the world, speaking as someone who’s undergone more than 50 surgeries, is the warm, fuzzy-blanket sensation of lying on a frigid operating table as general anesthesia sets in, stinging through my IV, as the world tingles into static and murmuring voices withdraw. I like it because it’s finally a chance to surrender, to let go. There’s no other choice, anyway. Resisting the imminent sleep won’t work. It’s outside my power, so there’s no reason to try. It’s okay to not try. The inevitability of it all is comforting.
I wish life were the same — but it’s not. So I rarely give up — because I can’t.
I’m an advocate. Specifically, I’m a disability advocate, but sectioning off the term that way is misleading, implying that someone can meaningfully advocate for one group without advocating for others. Such a mindset, however, is how the disability justice movement has ended up in its current state of invisibility and erasure, despite disabled people forming the world’s largest minority.
Where has the discussion about disabled people been within police brutality and mass incarceration, when between a third and a half of victims of police violence are disabled, more than half of disabled African Americans are arrested by the time they turn 28, and incarcerated people are twice as likely to be disabled compared to the general American population? Where has the discussion about disabled people been within sexual violence and abuse, when intellectually disabled people experience assault at a rate more than seven times higher than abled people do? Where has the discussion about disabled people been within economic disparity, when disabled people in the US live in poverty at twice the rate of abled people, when disability is both a cause and consequence of poverty?
This isn’t an “either-or” question, a prioritization of one cause over another. It’s the opposite: a matter of supporting everyone we claim to stand for. Yet many of the most dedicated activists consider intersectionality as it relates to race, ethnicity, gender, sexual identity, and religion, among others, while overlooking the disabled people in each category. We live in the shadows, halfway in and halfway out of the world.
I see the scope of this situation, and I want to surrender, to let whatever will happen happen, to fall asleep. And so I return to the question with which I started this column and the theme that has guided my writing throughout this semester: Do I really exist in this world that I’m not supposed to exist in, this world where I’m invisible?
But unlike anesthesia-induced sleep, this outcome isn’t set in stone. So as I end this column, let’s look outward to our community. Let’s talk about some of what Harvard needs to do going forward if it really wants to “educate the citizens and citizen-leaders for our society,” to take steps toward building a place where everyone can grow and succeed.
Harvard needs to improve its accessibility, whether physical, academic, or social. Many members of the Harvard community have already explored the problems and solutions, as have I throughout my column, but I’ll add this: Accessibility cannot be a second priority. To be sure, ensuring accessibility, especially when it comes to renovating physical spaces, isn’t simple or instantaneous. But Harvard isn’t exactly lacking for money, and accessibility standards aren’t a new concept — the Americans with Disabilities Act was signed into law 32 years ago.
We cannot continue to wait, year after year, to be able to attend office hours and visit friends in their own rooms, just because our participation in this community isn’t considered urgent. This need for acknowledgment of our presence extends not only to Harvard’s administration but also to students and student organizations: Please think about accessibility when planning your events. It’s easy to do and means more than you know.
Harvard needs to offer disability studies courses and in the long term establish a disability studies department. No such classes were taught at the College this year, so if you want to study disability, you’re going to have to settle for studying it as a scientific problem or, if you’re lucky, as a medical ethics debate. It’s more than just personally demoralizing. Harvard, after all, is a place for exploration and discovery that’s sending people off into the world completely unaware of the histories, lives, and identities of 15 percent of the global population, unaware even that disability studies is an existing discipline.
I urge every applicable academic department to actively consider what disability studies offerings they can create, or at least what angles they can explore within existing courses under a disability studies lens. The possibilities are productive and numerous, if we only acknowledge them.
For ourselves, for everyone who’ll come after us, disabled people are advocating for change. Because we can’t let go. What I’ve written this semester has only scratched the surface of our experiences.
So, (self)-advocacy: a part-time job for disabled people, on top of our full-time classes, employment, and health needs. It’s a job we have to perform in order to live, a job I’ve embraced over the course of this column. I can’t call myself good at it yet — but by speaking my own individual story, I think my writing has grown louder than my quiet voice.
Contrary to what my unfortunate finals-season habits may suggest, we can’t avoid sleep forever, anesthesia or not. Eventually, we all fall asleep, and we wake up; and one day we’ll fall asleep without waking up. But in that sleep, we visit places unvisited, reach futures unreached.
We dream.
If my writing has made you imagine anything you’ve never imagined before — made you question yourself and your world, made you uneasy, made you uncomfortable — don’t push that away. Think about it, talk about it, bring it with you on your own path; live it, remember it. Those are dreams.
Because living a disabled life means — well, I don’t know, what does living a life mean? But for me, at least, it means that I love this world where I’m not supposed to exist, where I was born a stranger. I love Harvard too, where I’m invisible, where I don’t belong. I love this world because of everything in it, “Percy Jackson” books and vanilla ice cream; and I love Harvard because I can take archaeology classes, because I can zoom down the Science Center’s front ramp, because this is where my friends are.
The uncountable pains and struggles that remain, I won’t give in to. But once I do fall asleep, I’ll dream a new dream for tomorrow, a dream of a world and a Harvard where we can be treated like people. And I’ll wake up and write.
Ben T. Elwy ’23 lives in Quincy House. His column “Living a Disabled Life” appears on alternate Tuesdays.
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