I’ve spent the last year retching every morning before work. It gradually wrecked most of my teeth, until I couldn’t fasten my glove or brace or tear open a packet of tea. I’ve spent the last week in repairs, with more to follow. The dentist hit a facial nerve during one of them, which is a startling pain–like pool chlorine going up your sinuses, then numbing your nose and eyelid as if you’ve hit yourself. A twinge remains around my eye socket. But that pain, at least, is impersonal. I decided to use it–to let it stand for the dread that made me vomit and the hurt that created a false ache in my bones. I know my subconscious when I see it–if the memories and dread are screwing with my second hand, it means I need to get rid of them.
I’m not going to start with the details, because those alone are very small and petty. I can hear the accusations of oversensitivity already, because that’s exactly what I got when I tried to defend myself. Instead, I’m giving you the effect and the aftermath. You figure out what it sounds like to you.
I don’t sleep anymore until I’ve leant my stick against the bedroom wall, and I don’t let it get far from me in daylight. It has become a talisman by being my means of running. Also, the metronome clack as I walk reassures me I’m still here. Sometimes I doubt that; I feel very much like I don’t have enough skin over my bones. Any privacy I might have had is gone.
I forfeited it when I had to prove I stopped speaking one afternoon because a new pain med was affecting my voice, not because I was having a fatigue spell. It didn’t matter that the med I was reacting to was supposed to (and did) eliminate much of the fatigue. It didn’t matter that I told my coworkers it was just a side effect; my now non-existent fatigue symptoms were ultimately written down in detail, along with how inconveniencing it was to communicate with a writing person.
I dropped my speech half an hour before I was supposed to punch out; I’d worked until that point. “I don’t mean to hover,” said a coworker, “but the parent in me wonders how you’re getting home.”
Walking very slowly, I replied via post-it. Bus. And for the next hour or so, she argued that I couldn’t do that, it was hot, I should accept a cab or let another coworker drive me home. Said coworker interrupted me often, and when I talked about where I come from, xe always had a reason it couldn’t be so or brought up the straw disabled person who yells when people hold open doors. I didn’t want to owe such a person.
No, I wrote, and at one point xe took the pencil. Fuck it, I thought, if they don’t believe me I’ll show them by doing. I put on my stick and keys and walking glove and started toward my backpack.
“Not if I take it,” xe said, and xe did. I thrust out my palm, indicating Give it back, twice. Twice xe slapped me five, xyr palm sliding down the pad of my glove, and carried my bag on xyr shoulder for some time. Somebody talked about their kid’s favorite high five. Nobody said, “This is ridiculous.” I faced xyr and crossed my arms as best I could, tilting my head: This isn’t funny anymore. Xe responded by throwing my gesture back at me, with an exaggerated pout.
At some point xe set my bag behind a box, and when xyr back was turned I got it over my left shoulder and it slipped to my elbow. Instinct told me not to bother with the right strap; that would require taking my stick off my arm. I took a step and was pulled short when xe put xyr arm through the other strap. My elbow contracted and started to jerk, making it hard to slip out.
“Aww, that’s precious!” a coworker said, and xe agreed, “We’re bookbag buddies!”
I finally disentangled my arm and walked out, only to remember that I needed something in my bag. I shut my eyes and walked back into the room, and heavily wrote Cab. “Ride,” said my coworker, “when you’re ready for your ride you can go.”
Fine, I wrote, because there was nothing left. My coworker hugged me sideways without warning, so hard that I stood on my toes not to fall. “Come on, can’t I get a smile?” I sickened myself by baring my teeth. I didn’t look at my coworker in the car. Suddenly I was homesick, remembering a teacher who sometimes offered me a ride when it snowed. Yes, I said, or No, thanks, and it was very simple.
I bolted my door behind me and started to scrub my skin. There’s a temperature at which the human voice melts and turns cloying, reducing you to a small child or a cat–some unruly but ultimately manageable creature. I wanted to hiss. I couldn’t scrub it off. I disassembled my stick and washed it, too, hypnotized by the flecks of metal in the paint.
It did not go in my favor when I reported it. “You’ve been sick before, and you were vulnerable and asking for help before, and you need to own up to that.”
I didn’t ask for it that time. I refused it in capital letters.
“We could be liable if something happens to you. Besides, they were just showing concern for you.”
I thought of the colleague who’d invited me to Thanksgiving dinner when I thought the threat of losing my benefits and possibly my housing would kill me with the stress. I remembered the professor who’d sent me home to an alcoholic father with a piece of sea glass and a copy of Jane Eyre. Not that way, I wanted to say. There was no faith in me. They took my strength from me. They took my body from me. I LIKED these people. I thought we were equals.
“Sure, it might have felt like an assault, but you know, once a parent always a parent. I’d do the same with my kid.”
I’ve been over 21 for some time now. I have a mother. I was the first disabled person she ever met, and she was afraid of everything. And she never would have pulled that shit.
“You need to understand,” they interrupted me midsentence, usually shortly after telling me, “I can’t imagine what you go through.” They said I couldn’t communicate. But a funny thing happens when people talk over you and you can’t interrupt them back: you become whatever they say you are, because the only words are theirs. If you do get a word in, the point you wanted to make has been detoured so badly that you can’t get it back. There’s no time left. So you throw any anecdote or metaphor you can and hope something sticks. Or you start with a disclaimer, hoping to mollify them so their knees don’t jerk and they won’t interrupt you. “I know you didn’t mean to do or say that, but it makes it hard for me… Oh, just forget it.” And there goes your point again, and too many attempts to explain make you a harpy. I wasn’t good at picking my battles, but I didn’t know I’d have such a large one later. I wasn’t born an advocate. I thought I could stop the little cuts before I bled too badly.
“You have issues,” they said, and thunked their books down and said, “I’m done walking on eggshells.” The idea that respect was an unreasonable request flooded my bones with a briny ache that still hasn’t quite gone away.
I’ll spare you the little kneejerk acts of retaliation over the following months, the times people I’d respected said things I hadn’t said or done. It wasn’t good for my record, let’s just say. Finding that out was a stomach punch; no one asked me whether I’d actually said them. It potentially lessened my chances of getting another job. And then just like that it was as if nothing happened, and they’d forgotten. I don’t think I’m going to, not completely. It’s not a grudge; it’s just that I can’t afford to forget altogether.
There’s nothing quite like physically realizing that for much of society, bodily autonomy doesn’t apply to sick or disabled people. Things that qualify as bullying or inappropriate for nondisabled people are done for disabled people’s own good, and consent doesn’t apply. If consent is given once, it’s permanent and we can’t revoke it. I have a feeling sometimes that in the back of people’s heads, disabled people exist to make nondisabled people feel good about themselves, and if we stop doing that, we’re at very high risk of being screwed both literally and figuratively. And we’re not worth apologizing to, because nondisabled people “can’t control how you CHOOSE to INTERPRET things.”
Nothing I’ve said here is unique; anybody writing for BADD has experienced disempowerment, and in potentially more life-threatening ways. All the same, I think something in me burned away. It’s really hard to write now, because it’s hard to feel that my word as a disabled person is worth anything. On the very bad nights, I believe everything they said.
I’m not totally gone, though: I know I didn’t CHOOSE to ruin my teeth with a mouth full of acid.