You May Not Notice My Disability

But my low vision is not invisible

Elizabeth Kleinfeld writes about living with low vision

I once confronted a woman who had parked in a disabled parking spot at a store. She looked non-disabled to me as she walked hurriedly toward her red sports car. I made an obnoxious remark about her having a fake parking permit. She ducked her head, avoiding eye contact, and sped off.

More likely, I was harassing someone with a so-called invisible disability. She might have been a person with MS having a “good” day or she might have had chronic pain. Given that she wasn’t carrying any grocery bags, I think she had probably been picking up a prescription, which she tucked into her purse before encountering me.

I mistakenly thought that disability was always visible and stable. It took my becoming disabled myself and then becoming my husband’s caregiver after he was paralyzed by a stroke to really understand how fluid and non-apparent disability can be. A colleague taught me that it makes more sense to call some disabilities “non-apparent” because they aren’t actually invisible, it’s just that we don’t interpret what we’re seeing as evidence of a disability.

I have low vision, a generic term used to describe vision impairments that cannot be corrected by glasses or surgery. In my case, my low vision is caused by a combination of nine different conditions, most of which probably wouldn’t be too serious on their own, but in combination, are tricky if not impossible to treat.

My disability may not be apparent to you, but it isn’t invisible. You might notice the dramatic prisms in my glasses that refract the edges of my face, or you might see me wearing an eyepatch. You might observe me hunched over my laptop, leaning much closer to the screen than most people do. You might learn that I haven’t driven since 2019 and assume, like many do, that I had too many DUIs. You may see me walking into a retaining wall or a parked car or a pile of boxes and think I am drunk. Or you might notice me being late for an event and not realize that although I left home early for my bus, being unable to find a crosswalk due to construction around my usual bus stop caused me to miss my bus. All you see is me being late and it doesn’t occur to you to attribute that to a disability, because I don’t use a white cane or a wheelchair or have a service dog.

You’ve certainly witnessed someone running out of spoons. Imagining spoons as a metaphor for units of energy comes from Christine Miserandino, who has lupus. Her 2003 essay, “The Spoon Theory,” explains that when someone has a chronic illness, they start each day with a limited number of spoons and everything they do means subtracting spoons from their initial bunch. They need to make choices throughout the day about how to use their spoons or risk running out before the day is done.

Most people can see without using any spoons, but not me. I’m constantly navigating double or blurred vision. My eyes don’t discern the difference between the gray sidewalk, the dark asphalt, a dark colored car, and a person in a dark jacket—it all blurs together into one dark mass to me. Every time I’m in a new space, I need to use a few spoons to figure out where the dangers are lurking—the poorly marked staircase, the column painted the same color as the wall beyond it, the screen door that appears to me to be an open doorway. My vision issues are made worse by poor lighting, so if it’s overcast out, I’m already down a spoon; if it starts raining, there goes another one. When the weather is iffy, I conserve spoons early in the day just in case.

As a professor and writer, I rely on my vision for reading and writing, but my vision is finicky. I may start the day down by two spoons because my vision is inexplicably blurry when I wake up. Sometimes I use spoons carelessly and pay the price later. Recently I read on my Kindle with my distance glasses on the bus because the bus was full and I was afraid I’d be jostled while changing into my reading glasses and if I drop them, I’m useless. This poor choice meant I couldn’t read for the first hour I was at work because my eyes were too strained.

The trickiest thing is that I never quite know how many spoons I started out with. I like to think I start with ten, but some days, despite doing my best to conserve spoons, I am suddenly out—my vision goes double or everything is blurry. I don’t know why I got fewer spoons those days, but once they’re gone, they’re gone. And then you may see me closing my eyes during a conversation and think I’m being rude—but I’m just trying to preserve enough vision to get me home on the bus.

Others misunderstand what they are seeing me do. They call me rude, lazy, entitled. They whisper about me “taking advantage” of accommodations I don’t “need” when I request high contrast handouts in meetings or “gaming the system” when I ask my employer to pay for a $35 desk lamp that will allow me to read in my office with less eye strain. I know the righteous indignation they feel—that’s what I felt when I harassed the woman in the parking lot.

My husband’s disability was all too visible, his wheelchair like a beacon. But somehow, his wheelchair became all that people noticed and he became invisible. When we were together, people spoke to me about him, as if he couldn’t speak for himself. Nobody harassed him, but nobody acknowledged him, either.

Watching my husband be ignored, I learned that invisibility is not the superpower we think it is. It is dehumanizing. People have asked me why I say I am proud of my disabled identity. Disability is not something to be ashamed of. I make my way through a world every day that doesn’t want me to exist, that doesn’t acknowledge me and tries to not notice me. That prefers to assume I am drunk, rude, or entitled rather than that I am disabled in ways they don’t immediately grasp.

If that’s not a superpower, I don’t know what is.

Elizabeth Kleinfeld is a writer and professor living in Denver, Colorado. She is writing a memoir about being her husband’s caregiver for the year before he died. Her essays about grief have been published in The Boston Globe, Herstry, Bright Flash Literary Review, and in an anthology about the 2020 pandemic. Her work has been nominated for the Pushcart Prize. She blogs about grief and disability at elizabethkleinfeld.com

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