because sometimes there are invisible tests and invisible rules and you're just supposed to ... know the rule. someone you thought of as a friend asks you for book recommendations, so you give her a list of like 30 books, each with a brief blurb and why you like it. later, you find out she screenshotted the list and send it out to a group chat with the note: what an absolute freak can you believe this. you saw the responses: emojis where people are rolling over laughing. too much and obsessive and actually kind of creepy in the comments. you thought you'd been doing the right thing. she'd asked, right? an invisible rule: this is what happens when you get too excited.
you aren't supposed to laugh at your own jokes, so you don't, but then you're too serious. you're not supposed to be too loud, but then people say you're too quiet. you aren't supposed to get passionate about things, but then you're shy, boring. you aren't supposed to talk too much, but then people are mad when you're not good at replying.
you fold yourself into a prettier paper crane. since you never know what is "selfish" and what is "charity," you give yourself over, fully. you'd rather be empty and over-generous - you'd rather eat your own boundaries than have even one person believe that you're mean. since you don't know what the thing is that will make them hate you, you simply scrub yourself clean of any form of roughness. if you are perfect and smiling and funny, they can love you. if you are always there for them and never admit what's happening and never mention your past and never make them uncomfortable - you can make up for it. you can earn it.
don't fuck up. they're all testing you, always. they're tolerating you. whatever secret club happened, over a summer somewhere - during some activity you didn't get to attend - everyone else just... figured it out. like they got some kind of award or examination that allowed them to know how-to-be-normal. how to fit. and for the rest of your life, you've been playing catch-up. you've been trying to prove that - haha! you get it! that the joke they're telling, the people they are, the manual they got- yeah, you've totally read it.
if you can just divide yourself in two - the lovable one, and the one that is you - you can do this. you can walk the line. they can laugh and accept you. if you are always-balanced, never burdensome, a delight to have in class, champagne and glittering and never gawky or florescent or god-forbid cringe: you can get away with it.
you stare at your therapist, whom you can make jokes with, and who laughs at your jokes, because you are so fucking good at people-pleasing. you smile at her, and she asks you how you're doing, and you automatically say i'm good, thanks, how are you? while the answer swims somewhere in your little lizard brain:
how long have you been doing this now? mastering the art of your body and mind like you're piloting a puppet. has it worked? what do you mean that all you feel is... just exhausted. pick yourself up, the tightrope has no net. after all, you're cheating, somehow, but nobody seems to know you actually flunked the test. it's working!
aren't you happy yet?
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Today my therapist introduced me to a concept surrounding disability that she called "hLep".
Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"
And my therapist pointed out that this is not "help", it's "hLep".
Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.
At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.
So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!
Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!
Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!
Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.
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hi I don't think this duo gets enough love, so here are my fave screenshots of Raph and Leo mirroring each other! :D
+bonus:
look at this frame! don't their poses look similar, even though they're in totally different places?? well, there's a simple reason for it! we can see raph in the driver seat, his left hand on the wheel, while the other one's searching for someting, it's symbolising his active role as leader, while leo stands alongside him, his left hand on a handhold while he gestures with the other, showing him being less active and more of a passive presence, but he's ready on his feet, it's symbolising his potential as raph's co-leader but also him not yet being ready, still gripping the safety rails instead of the driving wheel-
(nah i'm kidding- like, was it just artists drawing similar poses in one scene? oh yeah most definitively! will that stop me from over-analysing? nope! :D this basically wrote itself!)
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crows use tools and like to slide down snowy hills. today we saw a goose with a hurt foot who was kept safe by his flock - before taking off, they waited for him to catch up. there are colors only butterflies see. reindeer are matriarchical. cows have best friends and 4 stomachs and like jazz music. i watched a video recently of an octopus making himself a door out of a coconut shell.
i am a little soft, okay. but sometimes i can't talk either. the world is like fractal light to me, and passes through my skin in tendrils. i feel certain small things like a catapult; i skirt around the big things and somehow arrive in crisis without ever realizing i'm in pain.
in 5th grade we read The Curious Incident of the Dog In The Night-time, which is about a young autistic boy. it is how they introduced us to empathy about neurotypes, which was well-timed: around 10 years old was when i started having my life fully ruined by symptoms. people started noticing.
i wonder if birds can tell if another bird is odd. like the phrase odd duck. i have to believe that all odd ducks are still very much loved by the other normal ducks. i have to believe that, or i will cry.
i remember my 5th grade teacher holding the curious incident up, dazzled by the language written by someone who is neurotypical. my teacher said: "sometimes i want to cut open their mind to know exactly how autistics are thinking. it's just so different! they must see the world so strangely!" later, at 22, in my education classes, we were taught to say a person with autism or a person on the spectrum or neurodivergent. i actually personally kind of like person-first language - it implies the other person is trying to protect me from myself. i know they had to teach themselves that pattern of speech, is all, and it shows they're at least trying. and i was a person first, even if i wasn't good at it.
plants learn information. they must encode data somehow, but where would they store it? when you cut open a sapling, you cannot find the how they think - if they "think" at all. they learn, but do not think. i want to paint that process - i think it would be mostly purple and blue.
the book was not about me, it was about a young boy. his life was patterned into a different set of categories. he did not cry about the tag on his shirt. i remember reading it and saying to myself: i am wrong, and broken, but it isn't in this way. something else is wrong with me instead. later, in that same person-first education class, my teacher would bring up the curious incident and mention that it is now widely panned as being inaccurate and stereotypical. she frowned and said we might not know how a person with autism thinks, but it is unlikely to be expressed in that way. this book was written with the best intentions by a special-ed teacher, but there's some debate as to if somebody who was on the spectrum would be even able to write something like this.
we might not understand it, but crows and ravens have developed their own language. this is also true of whales, dolphins, and many other species. i do not know how a crow thinks, but we do know they can problem solve. (is "thinking" equal to "problem solving"? or is "thinking" data processing? data management?) i do not know how my dog thinks, either, but we "talk" all the same - i know what he is asking for, even if he only asks once.
i am not a dolphin or reindeer or a dog in the nighttime, but i am an odd duck. in the ugly duckling, she grows up and comes home and is beautiful and finds her soulmate. all that ugliness she experienced lives in downy feathers inside of her, staining everything a muted grey. she is beautiful eventually, though, so she is loved. they do not want to cut her open to see how she thinks.
a while ago i got into an argument with a classmate about that weird sia music video about autism. my classmate said she thought it was good to raise awareness. i told her they should have just hired someone else to do it. she said it's not fair to an autistic person to expect them to be able to handle that kind of a thing.
today i saw a goose, and he was limping. i want to be loved like a flock loves a wounded creature: the phrase taken under a wing. which is to say i have always known i am not normal. desperate, mewling - i want to be loved beyond words.
loved beyond thinking.
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