I once harassed a woman who had parked in a disabled parking spot at a store. She looked non-disabled to me and walked hurriedly into the store. I waited for her to return to her car and then made an obnoxious remark about her having a fake parking permit.

I wish I could say I was drunk when I did this, or that I was put up to it by someone else, but no, I did it of my own volition and felt quite righteous about it for a long time afterwards. In my mind, I was defending disabled people.

In reality, I was harassing a disabled woman and probably adding a huge load of anxiety to what might have already been a tough trip to the store.

I now realize that the woman I harassed likely had a non-apparent disability. I’ve heard the term “invisible disability,” but a colleague taught me that it actually makes more sense to call them “non-apparent disabilities” because they aren’t invisible to everyone. My own vision impairment, for example, is invisible to a lot of people but not to me or my loved ones.

People with non-apparent disabilities are often targets of the kind of harassment I subjected the woman in the parking lot to.

I mistakenly thought that disability was stable and apparent. It took my becoming disabled myself and then being the caregiver of my disabled husband to really understand how fluid and non-apparent disability can be.

I recently spent the day with a companion who has a non-apparent chronic illness. We went to a museum together, and although they walked into the museum, they decided to use a complimentary wheelchair to navigate the exhibit to conserve their energy. Not having to summon energy to walk allowed them to fully concentrate on the exhibit without tiring themselves out. Anyone watching my friend walk into and out of the museum might have thought they were using the wheelchair gratuitously.  

Disabled people sometimes talk about not having enough spoons to do something. Imagining spoons as a metaphor for units of energy comes from Christine Miserandino, who has lupus. Her 2003 essay, “The Spoon Theory,” describes her explaining to a non-disabled friend that when someone has a chronic illness, they start each day with a limited number of spoons and everything they do means subtracting one or more spoons from their initial bunch. They need to make choices throughout the day about how to use their spoons.  

My friend using the wheelchair in the museum allowed them to put their limited number of spoons toward processing the exhibit and then socializing with me. If they had chosen to walk through the exhibit, there would have been fewer—or maybe no—spoons left for other tasks of life: getting home safely, making and eating dinner, responding to text messages, etc.

My low vision means that navigating new spaces takes a lot of spoons from me. Most people can see without using any spoons, but 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 invisible-to-me screen door.

Today is a pretty typical day and already I’ve used quite a few of my spoons. When I woke up and noticed it was overcast, I knew I was already down a spoon. If it started raining, I’d be down another one, so I knew I had to conserve spoons just in case. Luckily, the days are long right now, but from November through March, I’m down a spoon because of the short days.

I’ve already used

• two spoons because my vision is inexplicably blurry lately.
• one spoon trying to figure out where the crosswalk was near a construction site on my way to the bus stop. I made the choice to walk an extra two blocks to skirt the entire construction site but be able to see where I was going.
• one spoon trying to figure out why a website wasn’t processing my request to make a purchase. I ended up abandoning the purchase.
• two spoons reading 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.
• one spoon making the decision to not finish answering an email that requires me to dig up a report. My vision was starting to double and I need to conserve it so I’ll be able to proofread a draft an employee gave me later.

It’s 4:30 pm and I’m down at least eight spoons. That’s probably enough to get me through the rest of the day, but 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 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.

Whenever I hear colleagues talk about students “taking advantage” of accommodations they don’t “need” or “gaming the system,” I know the righteous indignation they feel—that’s what I felt when I harassed the woman in the parking lot.

Now I know better. And now you do, too.