Wednesday, February 15, 2017

Sometimes it's not me. It's you.


[Content note:  This is ranty, angrier than what's usually published here, and contains profanity.]
This isn’t what [SLAM] I wanted to be writing today.
It’s not even [SLAM] halfway through my day, and I am completely fucking fed up with non-autistic people’s utter care[SLAM]lessness about the world around them.
I’m [SLAM] sitting in a coffee shop that I normally like a lot.  [SLAM]
I nearly always have to leave my apartment and go out to a café in order to really get anything done—there’s [SLAM] too much available [SLAM] distraction in my apartment between the internet and all my books and art supplies and a hundred things that need doing around the house at home.  So I go out.
It’s [SLAM] Sunday, which makes it harder.  Places will be more crowded.  Some don't allow computers on weekends.  My usual favorites won’t [SLAM] have seats at all, and weekend crowds (containing more families and small children) are [SLAM] louder and [SLAM] rowdier than weekday ones (who are mostly students and freelance writers).  It’s also spitting freezing rain outside, so I don’t want [SLAM] to walk very far, and also I need to eat before work, so I need to be able to get back in time to do that.
This place is right off a subway stop and almost always has seats even on weekends even though it’s on the smaller side.
[SLAM]
Something is wrong with the pneumatic [SLAM] thingamajig that controls the front door’s opening and closing, though, and if someone opens it and then just lets it go at the outside of its arc instead of easing it closed, it slams with a painful metallic [SLAM].
There’s a sign on both [SLAM] sides of the door asking patrons to be careful with it, but about 75% of [SLAM] them don’t read it.  Or maybe they do but they don’t [SLAM] think it applies to them personally.  Or they [SLAM] aren’t taking the moment it would require to integrate the [SLAM] verbal information contained in the sign with the physical [SLAM] information conveyed by the fact that [SLAM] the resistance just feels wrong when you pull the [SLAM] door open in order to conclude that they need to be careful about how [SLAM] they close the door...to glean the kind of physical information from their environment that I have to be doing constantly.   [SLAM]
I don’t know.
[SLAM]
I start trying [SLAM] to warn people who I see enter and let go of the door, but most of them still don’t understand until it’s too late if they hear and understand me at all.
The barista starts trying to warn people, too, with [SLAM] only a slightly improved rate of success.
Finally he sends another employee to try to jerry-rig a temporary fix. 
[SLAM]
It doesn’t [SLAM] work.
[SLAM]
They try again about 15 minutes later.
[SLAM]
No luck.
Every [SLAM] time it seems like people are getting the hang of it and I start to relax, [SLAM].
Within a [SLAM] few minutes, my head hurts, my ears hurt, my brain feels like it’s bleeding, my eyes hurt, my hands hurt, and every nerve in my body stands on end every [SLAM] time somebody reaches for the door handle.
I’m reading, or trying [SLAM] to, a book that I’m really enjoying, by an author who’s a particular favorite of mine, and I resent [SLAM] bottomlessly that my experience of it, my ability to sink [SLAM] myself [SLAM] into [SLAM] the rhythms of [SLAM] his words, is being fractured like this.     [SLAM]
Ironically, it’s a book [SLAM] about disability and cure culture.
A woman [SLAM] waiting for her drink knocks a ceramic mug off of its counter display and it falls to the tile floor and {CRASH} shatters.
Yeah, I could “just go somewhere [SLAM] else,” requiring, at this point, a long walk in the freezing rain, for no guarantee there’s even a seat [SLAM] free in another café in all of upper Manhattan or that there [SLAM] won’t just [SLAM] be a different or worse issue wherever I wind up, or that I don’t just end up going [SLAM] home, whereupon I have wasted my whole entire [SLAM] fucking afternoon in transitioning.
            -Putting on/taking off boots, scarf, gloves, coat, hat, backpack, headphones
            -Make sure I have keys and Metrocard and chapstick
            -Leaving/arriving/getting on the train/getting off the train/coming in/negotiating enough room  to sit/sitting down/getting settled/unpacking/packing up to leave
            -From misery to misery, from getting nothing done to getting nothing done to getting my focus shattered again and again and again until even though I’ve had seven whole hours between waking up today and having to be at work, I have nothing to show for it except for a headache that neither Advil nor alcohol will relieve and wet jeans, cold feet, a short temper, exhaustion, and             inability to control my tone of voice which will now only be held against me, because I still have to go to work after this.
[SLAM]
Yes, I have ear[SLAM]plugs.  Firing range grade earplugs, as it happens.  They muffle the sound of [SLAM] the continuous door-slamming somewhat, but not the physical sensation [SLAM] of it, or the randomness, which are equally [SLAM] debilitating factors.
My day is going to [SLAM] be ruined even though I have done nothing wrong and made no mistakes here.  
[SLAM]

We use this blog to talk about our problem-solving, our resilience, our creativity, our self-accommodation and how those things make us successful by our own standards, but, like, sometimes there’s just no way around this:
I need you to be more careful.
I need you to pay more attention to the world around you and how it works.
I need you to watch your volume and where you are in space.
I need you to stop fucking with knobs on sound systems you don’t understand.
I need you to stop slamming shit and breaking shit and dropping shit and dragging furniture and not watching where you’re going.
This cannot, cannot, always be on me alone.  That I can do everything right, take every precaution to protect myself, short of just never leaving my room (and then I would doubtless be told that I was “letting my diagnosis limit me” or “using it as an excuse”), and still wind up hurt, sick, melting down, my ability to function for the rest of the day or the week ruined, not because of my [SLAM] autism, but because you don’t [SLAM] have any stakes in being more fucking careful about how you go stomping through the world.  It cannot just be my fault for existing and, like, daring to think I might be able to do something wild like go out for coffee before work without destroying myself.
I say things like "of course we want better treatments for things like anxiety," but my anxiety or rigidity are not the problems here; they are instilled and necessitated by my need to protect myself from your chaos and noisemaking and unreliability.
This is not just my inability to live [SLAM] in the world or deal with other people; this is not just that it’s hard to live in a city (although it is).  This is a function of how you treat the world around [SLAM] you.  [SLAM]
And when I startle or yelp in pain, other people look at me like I’m weird or frightening or disturbing, if they don’t outright laugh at me.  Somehow I’m the one who’s defective when your carelessness [SLAM] gets me hurt.
I have to spend most of my days doing complex, multi-variable calculations like this about how to get through a day; this takes up an unholy proportion of the mental bandwidth that I spend planning my life, and it is never, ever enough, and you know what?
At some [SLAM] point, it’s not me, it’s you.

5 comments:

  1. I love this. Had an experience last night when a "friend" explained (screamed) that everything about me was wrong, silly & unimportant. I don't live in the moment (whatever the fuck that means, where else would I live?), I obsess about irrelevant issues such as world hunger, industrial pollution, endless wars - you know, typical mindless bullshit not nearly as important as the latest episode of Blah Blah, new mascara and trying to be more fashionable.

    I was attacked for being me although this person cannot seem to remember the reason she "puts up with my quirks" is because I am one of the few people who give a shit about her, will call her, help her with real things rather than liking her facebook status & calling it a day.

    Just because I am autistic does not remove the flaws of others. Honestly, at this moment, I am quite pleased that my disability is causing someone else problems. Welcome to the real world.

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  2. I really appreciate and connect to this.

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  3. A lot of people are like bulldozers, brawning their way through life with little to no concern about anything other then how to get ahead themselves. All that cognitive load that they save by giving a f... is amplified and ends up in the lap of whoever is sensitive enough to get distressed by them. I would say its probably most of the time, not some of the time that it's them, not you..

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  4. Brilliant writing device to convey the unsettleness by making it so the reader can not settle into a comfortable reading pace. Bravo!

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  5. It is wonderful to read a post by another autistic person who has auditory processing problems. Noise-cancelling headphones and earplugs can only do so much. There is still the painful sensation of babies screaming and dogs barking. I am hoping for housing that will keep me and others safe as well as more sensory friendly accomodations in public places. The kind of doors that have that device on top that prevents the slamming should be standard and required under the ADA.

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