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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you were raised in comparison.
it wasn't always obvious (well. except for the times that it was), but you internalized it young. you had to eat what you didn't like, other people are going hungry, and you should be grateful. you had to suck it up and walk on the twisted ankle, it wasn't broken, you were just being a baby. you were never actually suffering, people obviously had it worse than you did.
you had a roof over your head - imagine! with the way you behaved, with how you talked back to your parents? you're lucky they didn't kick you out on your ass. they had friends who had to deal with that. hell, you have friends who had to deal with that. and how dare you imply your father isn't there for you - just because he doesn't ever actually talk to you and just because he's completely emotionally checked out of your life doesn't mean you're not fucking lucky. think about your cousins, who don't even get to speak to their dad. so what if yours has a mean streak; is aggressive and rude. at least you have a father to be rude to you.
you really think you're hurting? you were raised in a home! you had access to clean water! you never so much as came close to experiencing a real problem. sure, okay. you have this "mental illness" thing, but teenagers are always depressed, right. it's a phase, you'll move on with your life.
what do you mean you feel burnt out at work. what do you mean you mean you never "formed healthy coping mechanisms?" we raised you better than that. you were supposed to just shoulder through things. to hold yourself to high expectations. "burning out" is for people with real jobs and real stress. burnout is for people who have sick kids and people who have high-paying jobs and people who are actually experiencing something difficult. recently you almost cried because you couldn't find your fucking car keys. you just have lost your sense of gratitude, and honestly, we're kind of hurt. we tell you we love you, isn't that enough? if you want us to stick around, you need to be better about proving it. you need to shut up about how your mental health is ruined.
it could be worse! what if you were actually experiencing executive dysfunction. if you were really actually sick, would you even be able to look at things on the internet about it? you just spend too much time on webMD. you just like to freak yourself out and feel like you belong to something. you just like playing the victim. this is always how you have been - you've always been so fucking dramatic. you have no idea how good you have it - you're too fucking sensitive.
you were like, maybe too good of a kid. unwilling to make a real fuss. and the whole time - the little points, the little validations - they went unnoticed. it isn't that you were looking for love, specifically - more like you'd just wanted any one person to actually listen. that was all you'd really need. you just needed to be witnessed. it wasn't that you couldn't withstand the burden, but you did want to know that anyone was watching. these days, you are so accustomed to the idea of comparison - you don't even think you belong in your own communities. someone always fits better than you do. you're always the outlier. they made these places safe, and then you go in, and you are just not... quite the same way that would actually-fit.
you watch the little white ocean of your numbness lap at your ankles. the tide has been coming in for a while, you need to do something about it. what you want to do is take a nap. what you want to do is develop some kind of time machine - it's not like you want your life to stop, not completely, but it would really nice if you could just get everything to freeze, just for a little while, just until you're finished resting. but at least you're not the worst you've been. at least you have anything. you're so fucking lucky. do you have any concept of the amount of global suffering?
a little ant dies at the side of your kitchen sink. you look at its strange chitinous body and think - if you could just somehow convince yourself it is enough, it will finally be enough and you can be happy. no changes will have to be made. you just need to remember what you could lose. what is still precious to you.
you can't stop staring at the ant. you could be an ant instead of a person, that is how lucky you are. it's just - you didn't know the name of the ant, did you. it's just - ants spend their whole life working, and never complain. never pull the car over to weep.
it's just - when it died, it curled up into a tight little ball.
something kind of uncomfortable: you do that when you sleep.
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i need help with vet bills (again).
hi. for those of you who remember, earlier this year i asked for donations to help me afford toos' vet bills, who we found out through your help had kidney failure, and again with your help we got her on medication for it. unfortunately it wasn't enough, and we lost her. and then shortly after, dexter began deteriorating, which we put down to his grief of losing toos - she kept him young, he followed her everywhere, he only played because of her, he only ate when she ate, etc. without her he just stopped. and then he started to have seizures and fits daily. we got him blood tests, but he was suffering so badly. we made the decision to put him down. i didn't ask for donations this time, because i was so deeply embarrassed to ask for help again. but we are still recovering financially from that, as well as the parts of toos bills that didn't get covered from donations. my mother hasn't worked for a very long time, she's disabled and very sick, and she receives PIP from the government that only covers her monthly medications that are not covered by the NHS. my father retired early to become her full time carer, and we are living off his pension. i am too disabled to work, but because my mother already receives PIP and i live with them, the government are resistent to giving me any help - so i have zero income, and rely entirely on my parents.
this is jenny. she's a 14 year old cairn terrier, who loves when we garden because she wants to help dig holes. she helped us bury dexter and toos, digging their graves for them with my dads help. she's an angel, and loves people so much she likes to escape under the fence and join other families for awhile. one time she got into someones back garden and asked to come in as they were eating lunch. she really hates flies, and will try to bite them out of the air (she has never succeeded but i believe she will one day). she will rub her face against you until you start stroking her, and will growl and even bark if you stop! we don't have the money to take jenny to the vets, for a checkup or for anything they may want to do. this has been an ongoing issue, but toos and dexter took priority, and it hasn't been a bother to her. she existed as normal for a long time, but that's since changed.
jenny has this lump in her mouth, it is larger than the picture shows, but she is a nightmare to force open her mouth since this got so big, i think it's uncomfortable or painful for her. she can't properly close her lips now, and it has pushed all her front teeth away, misshaping her mouth, and sometimes it bleeds profusely. eating has become difficult for her, she can't eat anything hard, and currently will only eat soft human foods like rice, scrambled egg chopped up so small she doesn't have to chew, and things like soups and gravy. she's lost a lot of weight, and i'm getting frightened. to add onto it, i've found lumps like this across her body. i've done as much research as i can, and i believe it to be an oral tumor, it fits, and it looks right, and it spreading across her body is called 'full staging'. and going by all i've read - they will want to remove them in surgery. according to my research, this will cost anywhere from £585 - £4,740 for just the lump in her mouth. that's not including any checkup/test costs, or the other lumps on her body.
she hasn't been to the vet yet, i don't have any secure goal or bills to share, just my assumptions and beliefs from researching myself online. my parents refuse to take her because we can't afford it. i want to save up money, have it in my bank, and show them that we can help her now, before it gets worse, or it's too late. as i said before, i don't have any income, so the only way i can do this is with help.
here's a link to my paypal.me
the icon is a little mouse, and the @ is rivellon
i struggled so badly posting the first post like this for toos. i felt so guilty and embarrassed and ashamed. but i have no choice again, i want to help jenny. i don't want her to suffer. and selfishly, i can't handle losing another dog so soon. this year has been waking nightmare, and i need your help to stop it getting even worse.
please reblog and share, even if you can't donate.
thank you for reading.
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PSA for all the people who have a pet Fibre Artist, whether you have a Knitter, a Crocheter or perhaps one of the more rare breeds like Spinners and Lace-Makers, make sure that they take frequent breaks from their craft by playing with them and taking them on walks since Fibre Artists are prone to giving themselves RSIs and Carpal Tunnel when left to their own devices for too long!
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