for anyone too young to know this: watching The Truman Show is a vastly different experience now, compared to how it was before youtube and social media influencers became normal
before it was like, "what a horrifying thing to do to a human being! to take away their autonomy and privacy, all for the sake of profits! to create fake scenarios for them to react to, just to retain viewership! to ruin their happiness just so some corporate entity could harvest money from their very humanity! how could anyone do something so evil?"
and now it's like, "ah, yeah. this is still deeply fucked up, but it's pretty much what every influencer has been doing to their kids for a decade now. probably bad that we've normalized this experience"
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probably time for this story i guess but when i was a kid there was a summer that my brother was really into making smoothies and milkshakes. part of this was that we didn't have AC and couldn't afford to run fans all day so it was kind of important to get good at making Cool Down Concoctions.
we also had a patch of mint, and he had two impressionable little sisters who had the attitude of "fuck it, might as well."
at one point, for fun, this 16 year old boy with a dream in his eye and scientific fervor in heart just wanted to see how far one could push the idea of "vanilla mint smoothie". how much vanilla extract and how much mint can go into a blender before it truly is inedible.
the answer is 3 cups of vanilla extract, 1/2 cup milk alternative, and about 50 sprigs (not leaves, whole spring) of mint. add ice and the courage of a child. idk, it was summer and we were bored.
the word i would use to describe the feeling of drinking it would maybe be "violent" or perhaps, like. "triangular." my nose felt pristine. inhaling following the first sip was like trying to sculpt a new face. i was ensconced in a mesh of horror. it was something beyond taste. for years after, i assumed those commercials that said "this is how it feels to chew five gum" were referencing the exact experience of this singular viscous smoothie.
what's worse is that we knew our mother would hate that we wasted so much vanilla extract. so we had to make it worth it. we had to actually finish the drink. it wasn't "wasting" it if we actually drank it, right? we huddled around outside in the blistering sun, gagging and passing around a single green potion, shivering with disgust. each sip was transcendent, but in a sort of non-euclidean way. i think this is where i lost my binary gender. it eroded certain parts of me in an acidic gut ecology collapse.
here's the thing about love and trust: the next day my brother made a different shake, and i drank it without complaint. it's been like 15 years. he's now a genuinely skilled cook. sometimes one of the three of us will fuck up in the kitchen or find something horrible or make a terrible smoothie mistake and then we pass it to each other, single potion bottle, and we say try it it's delicious. it always smells disgusting. and then, cerimonious, we drink it together. because that's what family does.
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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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he says i hate everyone except you and that is addictive and that is kind of romantic and beautiful because you're young and you're kind of a sarcastic asshole too and you don't like bad boys, per say, but you don't really like good ones either. and you like that you were the exception, it felt like winning.
except life is not a romance book, and he was kind of being honest. he doesn't learn to be nice to your friends. he only tolerates your family. you have to beg him to come with you to birthday parties, he complains the whole time. you want to go on a date but - people are often there, wherever you're going. he's just so angry. about everything, is the thing. in the romance book, doesn't he eventually soften? can't you teach him, through your own sense of whimsy and comfort?
at first - you know introverts often need smaller friend groups, and honestly, you're fine staying at home too. you like the small, tidy life you occupy. you're not going to punish him for his personality type.
except: he really does hate everyone but you. which means he doesn't get along with his therapist. which means he has no one to talk to except for you. which means you take care of him constantly, since he otherwise has no one. which means you sometimes have to apologize for him. which means he keeps you home from seeing your friends because he hates them. you're the single exception.
about a decade from this experience, you'll type into google: how to know if a relationship is codependent.
he wraps an arm around you. i hate everyone except you. these days, you're learning what he's actually confessing is i have very little practice being kind.
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