I Am More Than My Malfunctioning Brain And Body

Ableism doesn’t usually come in the form of teasing, it comes in the form of being written off.

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Photo by Kristina Flour on Unsplash

Originally published in the Medium publication, Invisible Illness. (Apologies for the highlighting, it’s from that platform and there doesn’t seem to be a way to undo it…Wordpress 🙄)

I recently met someone for the first time during an autistic burnout, which is when our brains are at their very least functional — making just about everything an immense, and often undoable, task.

But I’d been improving and was feeling confident I’d be able to have at least a short conversation without much trouble; plus, we’d Zoomed, he knew all about my autism diagnosis, and he seemed very compassionate so I figured he wouldn’t write me off if something did happen.

Unfortunately, the very beginning of the conversation should have been a warning that perhaps I’d been a bit naive in my assessment. He entered my patio and asked about the sign on my door, which asks people not to disturb me. (A very necessary effort to help lower autistic meltdowns, as people had been essentially walking right into my apartment and surprising the fuck out of my very-sensitive nervous system.)

He made a vaguely disapproving face and asked, “What’s that sign about? You seem so kind…”

I had a hard time explaining the sign, taking several minutes to explain something that a happier brain just allowed me to write in one sentence. He didn’t seem to understand, and instinctively I reacted by engaging in a masking technique — changing the topic instead of making sure he understood.

Attempting to ensure people understand what I’ve verbally communicated often winds up in both a lack of improved comprehension + some triggering comment like, “Yeah, I already got it…,” all annoyed-like, even though they’ve clearly demonstrated that they do not. It’s simply maddening, like I don’t quite speak my native language.

But talking about common interests was going great, anyway, so I was sure I’d at least made a friend; then a neighbor glared at me and slammed her patio door shut (I struggle with verbal volume control), and I immediately burst into tears.

My body twitched and I knew my hands wanted to shake about, stimming the tension out of me; but I suppressed it, laughing at myself instead, which sent all that energetic overwhelm inside me. It was just a minute or two before his words started to become incomprehensible to my ears, and that scary white light in my brain started flashing. I had to ask him to leave, with great kindness — but also in a hurry, knowing a meltdown (or worse) could come if not.

I thought it was all good as he left with kind well-wishes in parting, but a few days later it became clear that I did not make a friend. I’d been written off, yet again. And for a 20-minute conversation, when we’d been chatting for weeks.

It’s very frustrating to be judged for the things your malfunctioning brain and/or body are responsible for, especially when you’re striving to do the absolute best you can.

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Photo by Adrian Swancar on Unsplash

Not being able to welcome strangers into my space without notice doesn’t make me unkind, and having trouble verbalizing doesn’t mean I lack valuable perspectives.

And while I’m at it — not being able to hike doesn’t mean that I don’t appreciate nature, and it also doesn’t mean that I’m lazy. Not being able to work normally doesn’t mean that I don’t miss it, that I don’t crave the nourishment of being able to connect with others andcontribute to a community.

Having pain that you cannot see doesn’t mean that I’m crazy, or a liar. Being prone to depression doesn’t mean that I don’t value and honor life with my whole soul. And needing medical cannabis doesn’t make me “just a stoner.”

People write off the disabled, and it’s not like how we see on TV; they’re not calling us names and pushing us down, it’s far more subtle and incidieous. (And much of the time we don’t even look disabled!)

The cruelty in our society doesn’t only come from the things overtly said and done.

Far more frequently, it lies in the things left unsaid.

Messages communicated with a mere disapproving glance or rolled eye, a change in the vibe of the relationship, messages left unresponded, insults accompanied by far-fetched claims at “just teasing,” exchanged glances that demonstrate you’ve been disparaged behind your back, and things said making their way back to their target.

It’s cruel anytime, but when it’s done in response to things totally out of someone’s control, problems that already weigh them down and make life seem impossible — it’s fucking reckless.

So, if you know someone struggling due to a misbehaving brain and/or body; please, for the love of all that is holy, just give them a chance to be the best person they can be while dealing with their difficult situation.

Ask more questions. Truly listen to the answers. Try to find more essays like this, advocacy essays written by people who’re actually battling the same health issues.

Disabled people very often have to do and/or sacrifice a lot in order to socialize (so much more than abled folks understand), and that’s in addition to what we go through afterward, to recover.

Can’t you just take a little time to give us benefit of the doubt?

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