A Place in the Sun

The world plunged into isolation in 2020. What most people don’t realize, however, is that many disabled people are, have been, and will be in some form of isolation for their entire lives — and not the kind that protects them.

Forced solitude is a widespread problem among disabled people, one caused by ableism and the near-universal invisibility of our existence. Disabled people experience loneliness, low perceived social support, and isolation at significantly higher rates than those without disabilities. Whether disabled people are physically separated from others by inaccessible institutions or socially isolated within groups by hidden barriers of ableism, they’re pushed to the margins of their communities, into the shadows along the edges.

That’s where we spend our lives.

This pushing is a systemic action. A lesson I’ve learned when it comes to disability: If something can go wrong, it will. I’m talking about how my dad had to carry me up a flight of stairs to get me to my Harvard interview, about how my LSAT proctor only allowed me one of my five officially-approved accommodations. (I could write a whole column about my fun experiences.)

‘Murphy’s Law: Disabled Edition’ obviously isn’t an unbreakable rule, but it’s dishearteningly close to being one. That’s because it’s not a mere superstition; it’s a reflection of ableism so deeply entrenched into the fabric of society that we take it for granted. We’re all subconsciously trained to ignore it.

But when ableism occurs on a smaller scale, it’s no less devastating — rather, often even more so. Over time, gradually, one frustrating event turns into one hundred, until what seems minor comes to define my everyday life.

Disability creates social repercussions. When a club meeting is held in an inaccessible room; when someone shows me something on their phone, but the photo is too blurry for me to see, so I just nod and laugh; when people don’t consider inviting me to hang out because they assume I don’t do “normal person” activities, so that I always have to be the one to initiate plans if I want anything besides a meal in the dining hall to happen; repeatedly, over and over, every day, being with friends without being with them, being seen without being seen — that’s what social inaccessibility is. That’s what living in the shadows is.

It hurts.

Disability advocate Mia Mingus has coined a helpful term for this discussion: access intimacy. Access intimacy is a type of intimacy that occurs when someone “gets” your access needs, whether physical, mental, or sensory, no prompting required. It doesn’t mean that they’re successful in ensuring your needs are met, but it means that they try. Like platonic and romantic intimacy, access intimacy can develop over time. It signals that one’s basic needs for inclusion are being met, and it’s fundamentally impossible to build any meaningful relationship without it.

After a lifetime of feeling like a burden to my friends while watching my peers grow closer together without me, I’d know.

Access intimacy is when someone else looks out into the world and notices the ableism that permeates our lives, when they get angry at inaccessibility for us, when they momentarily live with us in our reality. It’s a feeling, a euphoric realization, that I can’t describe to anyone who hasn’t experienced it, except in these terms: If being disabled is living in the shadows, experiencing inclusion is finding a place in the sun.

This elation from access intimacy is made all the more powerful, unfortunately, by its scarcity. To think about others is such a simple action, and yet I often even have to remind friends that I can’t eat in inaccessible dining halls. It’s not that they think I can climb stairs (I use a walker), or that they forget I’m disabled (I use a walker), but that the problem doesn’t occur to them. Accessibility isn’t something we know to consider. And having to repeatedly remind others, to shoulder the weight of an inaccessible world alone, is draining. It makes me tired.

It’s no wonder that I get excited when someone proactively considers my accessibility needs, but I don’t think abled people understand the extent of that excitement. If someone shows even basic kindness, I’ll remember it photographically for years, long after they’ve forgotten it ever happened. This in itself is indicative of an issue: Disabled people go so unvalued, unappreciated, and unseen in society that we cling to anything we find, any validation of our meaning in the world. We’re conditioned to treat the bare minimum of consideration as revolutionary, to be overjoyed with eclipsed warmth while others stand under the sun.

So when the pandemic threw everyone into the shadows, I already knew how to exist in the dark. I’ll be stuck here long after everyone else leaves, too, searching for a place in the sun.

Living a disabled life means that the obstacles I face don’t end with my genetics. On the contrary, as much as my condition may hurt, the ableism I endure in social spheres always inflicts the deeper pain. We live alone even while surrounded by others, isolated in plain sight. It’s time that people, individually and collectively, learned to look beyond the glare into the shadows.

Ben T. Elwy ’23 is a joint concentrator in Linguistics and Classics in Quincy House. His column “Living a Disabled Life” appears on alternate Tuesdays.