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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i'm begging you guys to start pirating shit from streaming platforms. there are so many websites where you can stream that shit for free, here's a quick HOW TO:
1) Search for: watch TITLE OF WORK free online
2) Scroll to the bottom of results. Click any of the "Complaint" links
3) You will be taken to a long list of links that were removed for copyright infringement. Use the 'find' function to search for the name of the show/movie you were originally searching for. You will get something like this (specifics removed because if you love an illegal streaming site you don't post its url on social media)
4) each of these links is to a website where you can stream shit for free. go to the individual websites and search for your show/movie. you might have to copy-paste a few before you find exactly what you're looking, but the whole process only takes a minute. the speed/quality is usually the same as on netflix/whatever, and they even have subtitles! (make sure to use an adblocker though, these sites are funded by annoying popups)
In conclusion, if you do this often enough you will start recognizing the most dependable websites, and you can just bookmark those instead. (note: this is completely separate from torrenting, which is also a beautiful thing but requires different software and a vpn)
you can also download the media in question (look for a "download" button built into the video window, or use a browser extension such as Video DownloadHelper.)
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Whenever I talk about the medical neglect and ableism I've encountered as a victim of the healthcare system, there's always some cockwaffle who feels entitled to come into my inbox and make the argument of "not all doctors" while talking about how "people like them" (because it's always someone in a field of medicine who does this) are doing their best and it's really hard because so many people fake being ill to get on welfare (Yikes), but like, yeah, obviously #not all doctors, because if all doctors were negligent, bullying scum bags, I'd be dead.
But here's the thing: while I truly believe that the majority of doctors are doing their best in a system stacked against them and their patients, their presence does not negate the mass harm caused by the bad ones. And there are far more bad ones than you realize.
Fuck, John Oliver literally did a segment on this last week:
Yes, the truly bad, malicious doctors are in the minority. Most are just horrifically burned out and fighting a losing battle against a system, killing both them and their patients through a lack of funding and resources and profound overwork.
But the malicious ones do exist, and they will go out of their way to harm patients who don't kowtow to them.
I almost lost my life because when I was in my early twenties, I told a doctor I didn't think she was listening to me, and I disagreed with her assessment of my mental health (she was not a mental health doctor, and I was there for heart palpitations and chronic pain). She retaliated by putting "non-compliant" in my file.
There was also a fun little "doesn't show respect" note too that lives rent-free in my head because I know I wasn't rude. I was polite. I just didn't agree with her, and my refusal to accept her off-handed comment that "you probably have bipolar or BPD" (again, I was there for heart palpitations and chronic pain) meant I was "refusing care."
I wasn't. I just refused to be slapped with a mood/personality disorder when I was there because I kept fucking fainting when I stood up.
(Spoiler alert: it was dysautonomia)
That "non-compliant" marker followed me around for years. It followed me across an ocean and effectively ensured that any doctor I saw was going to treat me like absolute dogshit because no one wants to help Difficult Patients. It wasn't until I was so undeniably ill, literally on the brink of death, that anyone helped me.
I'm alive because of a good doctor. And all the good ones that came after him because of him.
So, I know they exist. You don't have to tell me that.
But I really fucking need you to acknowledge the bad ones and that you're part of a system with a long, long history of abusing minorities and vulnerable people. I need you to acknowledge that because it's the only way we're going to survive this godforsaken nightmare and make things better.
So yeah, #notalldoctors, but if you feel the need to say that because someone talking about being literally left to die by the medical system hurts your feelings, I'm going to have to ask you to take a step back and ask yourself if you're going into medicine for the right reasons.
Namely: do you want to help people, even the "difficult" ones?
Even the ones who might disagree with you?
Even if they're on welfare?
Even if they'll never get "better" in a way that means "cured"?
Just a thought. But hey, what do I know. I'm just someone who experienced hemolytic anemia because doctors kept telling me I was anxious and needed to exercise more 🤷♀️.
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