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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so one of the things that's so horrifying about birth control is that you have to, like, navigate this incredibly personal choice about your body and yet also face the epitome of misogyny. like, someone in the comments will say it wasn't that bad for me, and you'll be utterly silenced. like, everyone treats birth control like something that's super dirty. like, you have no fucking information or control over this thing because certain powerful people find it icky.
first it was the oral contraceptives. you went on those young, mostly for reasons unrelated to birth control - even your dermatologist suggested them to control your acne. the list of side effects was longer than your arm, and you just stared at it, horrified.
it made you so mentally ill, but you just heard that this was adulthood. that, yes, there are of course side effects, what did you expect. one day you looked up yasmin makes me depressed because surely this was far too intense, and you discovered that over 12,000 lawsuits had been successfully filed against the brand. it remains commonly prescribed on the open market. you switched brands a few times before oral contraceptives stopped being in any way effective. your doctor just, like, shrugged and said you could try a different brand again.
and the thing is that you're a feminist. you know from your own experience that birth control can be lifesaving, and that even when used for birth control - it is necessary healthcare. you have seen it save so many people from such bad situations, yourself included. it is critical that any person has access to birth control, and you would never suggest that we just get rid of all of it.
you were a little skeeved out by the implant (heard too many bad stories about it) and figured - okay, iud. it was some of the worst pain you've ever fucking experienced, and you did it with a small number of tylenol in your system (3), like you were getting your bikini line waxed instead of something practically sewn into your body.
and what's wild is that because sometimes it isn't a painful insertion process, it is vanishingly rare to find a doctor that will actually numb the area. while your doctor was talking to you about which brand to choose, you were thinking about the other ways you've been injured in your life. you thought about how you had a suspicious mole frozen off - something so small and easy - and how they'd numbed a huge area. you thought about when you broke your wrist and didn't actually notice, because you'd thought it was a sprain.
your understanding of pain is that how the human body responds to injury doesn't always relate to the actual pain tolerance of the person - it's more about how lucky that person is physically. maybe they broke it in a perfect way. maybe they happened to get hurt in a place without a lot of nerve endings. some people can handle a broken femur but crumble under a sore tooth. there's no true way to predict how "much" something actually hurts.
in no other situation would it be appropriate for doctors to ignore pain. just because someone can break their wrist and not feel it doesn't mean no one should receive pain meds for a broken wrist. it just means that particular person was lucky about it. it should not define treatment.
in the comments of videos about IUDs, literally thousands of people report agony. blinding, nauseating, soul-crushing agony. they say things like i had 2 kids and this was the worst thing i ever experienced or i literally have a tattoo on my ribs and it felt like a tickle. this thing almost killed me or would rather run into traffic than ever feel that again.
so it's either true that every single person who reports severe pain is exaggerating. or it's true that it's far more likely you will experience pain, rather than "just a pinch." and yet - there's nothing fucking been done about it. it kind of feels like a shrug is layered on top of everything - since technically it's elective, isn't it kind of your fault for agreeing to select it? stop being fearmongering. stop being defensive.
you fucking needed yours. you are almost weirdly protective of it. yours was so important for your physical and mental health. it helped you off hormonal birth control and even started helping some of your symptoms. it still fucking hurt for no fucking reason.
once while recovering from surgery, they offered you like 15 days of vicodin. you only took 2 of them. you've been offered oxy for tonsillitis. you turned down opioids while recovering from your wisdom tooth extraction. everything else has the option. you fucking drove yourself home after it, shocked and quietly weeping, feeling like something very bad had just happened. the nurse that held your hand during the experience looked down at you, tears in her eyes, and said - i know. this is cruelty in action.
and it's fucked up because the conversation is never just "hey, so the way we are doing this is fucking barbaric and doctors should be required to offer serious pain meds" - it's usually something around the lines of "well, it didn't kill you, did it?"
you just found out that removing that little bitch will hurt just as bad. a little pinch like how oral contraceptives have "some" serious symptoms. like your life and pain are expendable or not really important. like maybe we are all hysterical about it?
hysteria comes from the latin word for uterus, which is great!
you stand here at a crossroads. like - this thing is so important. did they really have to make it so fucking dangerous. and why is it that if you make a complaint, you're told - i didn't even want you to have this in the first place. we're told be careful what you wish for. we're told that it's our fault for wanting something so illict; we could simply choose not to need medication. that maybe if we don't like the scraps, we should get ready to starve.
we have been saying for so long - "i'm not asking you to remove the option, i'm asking you to reconsider the risk." this entire time we hear: well, this is what you wanted, isn't it?
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