It was a bright cold day in April, and I was walking back to my locker after sophomore year chemistry class. Suddenly, I heard a voice behind me:

‘Hey Miranda. I just wanted to say that you’re so inspiring. It’s amazing that you still go to, you know, normal school.’

I didn’t know how to respond, so I mumbled an ‘Uh, thanks…’ and walked away, a bit shaken.

Of course, my comrade didn’t intend to be malicious. She thought that she was complimenting me. But still, ‘Normal school’?

This wasn’t the first time that someone’s told me that I’m ‘inspiring’ for being normal. In fact, I hear that a lot. I do appreciate that people don’t mean to be patronising, but I still think it’s worth unpacking what they mean when they praise me for doing the things they do every day.

The girl in my chemistry class recognised that my poor vision disadvantaged me, and she wanted to applaud me for carrying on despite those difficulties. However, by framing that sentiment as praise for being ‘normal’, not only did she reveal her assumption that I’d be incapable of the same things as her, she also forced me to conform to her definition of normality and implied that I’d be a failure not to fit.

Normality is a cultural construction. We like to categorise ourselves into nice, neat boxes, when In reality, humanity is fantastically diverse. We live in nearly every part of the world, speak thousands of languages, follow thousands of belief systems. No, I’m not ‘normal’, and frankly, no one else is either.

But if not ‘normal’, what language can we use to describe ourselves?

As an aspiring anthropologist, I often study the ways that language affects how we perceive the universe. Different languages frame the world in different scientific or cultural terms, and as language changes, so too does the way we think and feel.

Our brains are hardwired to think in linguistic terms, so when confronted with messy, non-discursive concepts, we have trouble expressing quantifiably what we mean. Breaks in our language where we should have a word for something but don’t are called lexical gaps, or lacunas. For example, Romanian lacks a word for ‘shallow’, so English translators have to avoid the problem entirely by saying ‘not so deep’ instead.

English has lexical gaps too. A particularly diagnostic example of this is that we don’t have a word for people who aren’t virgins. The closest word we have is ‘deflowered’ which has an overtly negative cultural connotation and contributes to sex-negativity and slut-shaming. Another, equally distressing lexical gap that I’ve encountered is that English has words to describe disability, but we don’t have a single word to describe people who aren’t disabled. The closest terms we have to fill this gap are all imprecise and problematic. Except ‘normal’, the closest word for non-disabled people that I’ve encountered is ‘able-bodied’, which excludes people with learning disabilities and mental health difficulties.

Words have power. By labelling people who don’t perfectly conform to our expectations of normality as ‘disabled’, we imply those people’s disempowerment. I have a disability, but I don’t think of myself as disabled. I’m perfectly as able as everyone else, just in a different way.

That’s why I call myself a Stargardtian instead of a ‘person with Stargardt,’ a ‘Stargardt patient,’ or—Cthulhu forbid—a ‘victim of Stargardt.’ Since I invented my own demonym, I get to define its parameters. When I call myself a Stargardtian, Stargardt becomes something I willingly incorporate into my identity, not a label thrust upon me without my consent. I’m a Stargardtian, just like I’m a student, a dancer, a writer, a daughter, a friend. Stargardt is an important and inalienable part of who I am, but at the end of the day, it only has as much power over me as I choose to give it.

I believe that just as infrastructure should change to accommodate people with disabilities, so too should our language adapt to include and empower everyone. This process won’t happen on its own, though; we’ll need to help our language evolve to suit today’s needs. So, gentle reader, if you find a lexical gap you want to fill, I urge you to find a suitable collection of phonemes and make it so.