#learning to live with Disabilities

[lelibug]

DEGREDATION...

BLOG | Degridation | delphinemusic #fibromyalgia #ChronicPain #chronicillness #Dysphagia #Fatigue #pain #disability #Disabled #Autistic #AutisticBurnout

I feel like I Am Drowning… Suffocating... In Claustrophobic PANIC. Panic Attacks of fear, panic itself, shock, grief… It’s been TEN YEARS since this first started… and in those Ten Years I have lost the ability to control Just About Everything that’s in my body and my life.I can’t walk, and I’m basically Paralysed from the sternum down, now. I also have [mainly] Zero Sensation of Touch ANYWHERE…

[giantkillerjack]

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.

[bunnieswithknives]

Okay but does Peri KNOW that Dev has a robotic leg when he shows up? Something about the fact that Peri's wand is a cane and the fact that Dev could have kept his leg and just had a cane for the rest of his life instead tickles my brain.

I mean he doesn't know immediately, he wasn't like briefed or anything, but he basically lives in Dev's house so he definitely finds out. Peri doesn't comment on or react to it all though really, there's no reason for him to think anything of it, plenty of people have missing limbs, a lot of people are born without them, it doesn't necessarily mean anything sinister happened. He had no reason to pry or ask and I think Peri's lack of reaction to it helped Dev feel a bit more comfortable in his skin. (Not by much but.. a little bit.)

[enemywasp]

I HATE tiktok and the Internet in general rn for the obsession with "oh this person's smellyyy" "Brother it STINKS over here" "BOO 💧🧼🧽🚿" and stuff like that. I wish I could put into words how demeaning and patronising that whole idea is and people implying anyone they don't like doesn't wash.

For one there's something grating about being insulted in a manner like we're in nursery again. But also WHY is that the go to insult. Why do you associate these things? Especially to those you deem "chronically online". Like I don't want to sound pathetic but it feels so nasty to me.

is it extreme to say this feels tied to ableism? And classism too?

[marxism-leninism-meowism]

pretentious cynical fucks that think solarpunk is an apolitical cozy pseudo-punk movement are so unimaginably stupid. like okay whatever go off and have ur glorious revolution. i'm gonna be here making community and planting a garden and dismantling systems of oppression brick by brick in the communities around me, building something new and beautiful in their place. maybe you should give it a shot.

[i-am-a-freg]

People would really have you murder babies with disabilities. Mom might grieve after that baby is born, in fact she probably will, especially if it was unexpected. But how much worse to decide that child should die, and never get to learn how to take care of them, to help them grow into a beautiful human, help them learn how to live?

[romirella-96]

Lmao 🤣 too funny not to share! This was me in high school haha!

[tea-cat-arts]

Actually, I hope Jiaoqiu stays blind (at least for a couple years in our time) and just bullies the Xianzhou alliance into inventing disability aids and treating disabled people better

[chronicpaingirlie]

Life is patient!!! The world is patient!!!!! If you need to take a day or a month or a season or a year or more, the world will still be there for you when you’re ready!!! This life is one to be lived on my time, not anyone else’s.

I am learning how to live with the changes my body has thrown at me. There will be a time when I am confident in knowing how to be a person again. The world will still be here, ready to receive me again, as soon as I feel able to step into it.

[adhdblues]

I went many years not realising that something was wrong with me.

Many years of thinking that how I feel and how I process things was normal. Everyone experiences similar things, is what I thought.

School was okay. I ended up with good grades in the end - A, A, B for A-levels.

But I didn’t realise that I was struggling to understand textbook language. I didn’t know that comprehension of that type of text could be a learning disability. I just thought I wasn’t good enough.

I never really did any work in class. I was actively involved in discussions. Always had an idea to share, and my teachers seemed to really enjoy those discussions. But putting them on paper was fucking hard.

And the research never really got any deeper than the ‘contents’ page and half of the ‘introduction’ of a book. I had piles and piles of books to look through, they all intrigued me. But they just sat there, in a pile, looking cute.

They sat there as the guilt (of not reading through them) weighed on me more as deadlines got closer.

If we had to take notes in class, I wasn’t able to focus. Notes were mandatory, as per my teachers’ expectations - that’s the only way they’d know whether we are concentrating or not. But, I would leave the classroom feeling like I didn’t learn anything that day, because it was all too fast.

Now I know why.

I knew I was smart (sometimes I truly believed that), and I knew I could understand everything that was communicated to me verbally. But the classroom setting just wasn’t right.

I never thought that I’d be one to have ADHD, or that disability they called dyslexia. It felt so foreign, so out of reach - I shouldn’t even consider it because I don’t need the help, is what I thought.

I needed that help.

I never thought I deserved extra time during exams - even though I never fucking finished my papers. No matter how fast I tried to get through the questions, I always had 3 or 4 or 5 pages left once the time was up.

I was actually never told about such things existing, I didn’t know what ‘accommodations’ were. Not until I saw a handful of classmates sitting in a separate room, taking the exams at a different time to us. But still, no one really talked about it.

I just wish that my school, one of the ‘best British schools in the country’, would take learning disabilities more seriously.

I wish they had taken the time to educate us about such things, instead of telling us off for the eyeliner or nail polish we wore.

Instead of giving us detention for wearing pants tighter than their liking.

Or the assemblies they forced us to sit through, where they would bring in alumni to talk about all the amazing things they had achieved since they left school.

If only I had been told about what learning disabilities were:

- I would have struggled less in GCSE.

- I wouldn’t have had those multiple breakdowns because I thought I was stupid.

- I wouldn’t have thought that I wasn’t good enough.

I was always so intrigued by learning new things. But the classroom setting just wasn’t right. The teachers never came to me to ask why I’m struggling, they came to me to tell me I wasn’t good enough.

My biology teacher said she’d be surprised if I get a C. Out loud. In front of the whole class. As she gave out our mock exam results.

I got an A in biology when the real exam came around. Because I studied my ass off. At home. In my own space.

She did nothing to help me.

My math teacher told the whole class that I got the lowest score in my mock exam. I wasn’t there, but my classmates told me. It was embarrassing. I fucking cried. But now that I look back, it’s because I couldn’t understand textbook language at the speed they wanted me to.

I got an A in that too, when the exam actually mattered.

I never really cared much for mock exams. They didn’t mean anything towards my final grades, or my future. I couldn’t care less and they didn’t deserve the stress I’d have to go through.

I just knew I would study for the real exams. I knew I could pull all-nighters and study better under pressure.

Now I know why.

I would wonder why it was so hard for me to keep up with deadlines. I would think that maybe I just don’t care enough. But I kind of did, because I enjoyed learning. I enjoyed discussing and sharing ideas.

But the school system just wasn’t right.

I look back and wonder what it would have been like if I got the extra help that I needed. If I knew I was dyslexic, maybe my English teacher wouldn’t always make me read out loud to the class “to help with my reading skills”.

That was torture for me and everyone else involved - (I think she enjoyed seeing students struggle though).

I remember I specifically went and asked her to stop making me read out loud. Because I felt ashamed of all the long pauses, when I couldn’t find the line I was on. Or for saying the wrong thing, or pronouncing the words wrong. I was ashamed that everyone had to listen to me struggle, because I thought I was wasting their time.

She asked me to read to the class, that same day.

[everythingwasnormalhere]

weirdly, one of my favorite things about my chronic pain hc is how kenny will never get better

there is no magic cure

there is no way he can heal

the closest thing to a remedy would be painkillers, nothing permanent

there is not a moment in which it just, poof, goes away

he will just get progressively worse and worse, no way to fix it

he will never get better

the only thing he can do is learn how to cope with it, find his own strategies and get through life at his own pace

and his friends will obviously feel helpless - who wouldn't? but they'll have to get used to it, and help kenny be as comfortable as he can

and i think that's beautiful

[sevenangrybees]

On one hand I'm so so excited for more people to meet mithrun in the anime and go nuts over him.

On the other I am so worried about folks not being cool about their bad ass fucked up fave needing caregivers.

[knightpetrichor]

dyscalculic atsushi save me......... save me dyscalculic atsushi..........

[artsybi]

y'know despite the murder, i am jealous of the criminal minds universe, in which young cane users are not questioned, stared at, invalidated, or even overly acknowledged

like i understand that it was just an extension of the fact that the actor was ACTUALLY injured and ACTUALLY using a cane and probably would not have enjoyed added acted scrutiny because he probably dealt enough with it in his personal life (based on personal experience he probably dealt with a fair bit bc people irl are garbage about young cane users existing) but still, the fact that not a SINGLE PERSON ever questions spencer, ever questions the legitimacy of his need for an aid, ever questions why he's using it, god i'm so jealous

no one ever raises an eyebrow when he enters a room, no local detective ever makes a mean joke, no medical examiner ever stares at him for just a second too long, even when he does interviews, no family member or event planner EVER gives him a second look, they all just seamless accept that this member of the fbi is using a cane and never treat him any differently for it

no one mocks him! no one makes any snide remarks, no one side-eyes him when he enters a room, no one ever presses into his space and offers (read: demands) they do something for him since he's "not capable", no one questions his credentials, or his ability to do his job. everyone just accepts it as normal and continues as such. the literal ONLY DIFFERENCE in ANYONE'S treatment of him is that he doesn't go with the team when they head to the final location to grab the unsub with their guns out, which is a perfectly reasonable accommodation! and no one mocks him for that either! no one ever implies he's "missing out" and everyone keeps him in the loop during the investigation when they're doing things of that nature, so he can help put the last pieces together

just, as a young cane user myself, not only is spencer the literal first time i've ever seen someone on tv using a cane correctly (not an exaggeration, actors seem incapable of using canes correctly), and thus the first person i've ever TRULY seen that part of me in, but i just LOVE the way the show and narrative treat him in general, mostly because the way they treat him straight up DOESN'T CHANGE!! dude i fucking WISH that was my reality!!! i WISH people straight up DIDN'T CHANGE the way they treated me after i started using a cane, i fucking WISH everyone just accepted at face value the fact that i use one and then moved on and didn't mention it again

[theoddvet]

A week does not go by without me wishing I did not have ADHD.

I mean, I'm glad I was diagnosed and became aware of it because I can understand why I struggle so much now. I also often appreciate and even take pride in how it makes me driven, passionate, and so highly connected to the people and world around me, but I frequently wish I wasn't born this way.

It is such a debilitating disability to have in the society we live in right now.

[randaccidents]

Questions for science purposes

When Heart wakes up, does he still will have Black limbs?

If yes, then how does he will react? :3

*evil laugh*

Yes, every physical change Heart has experienced is permanent. He is never getting his wings back, and his limbs are forever blackened and weak and cold to the touch. Even after he recovers.

About his reaction - he doesn't Notice at first. There is a very long period of relapses and bedrest and he notices his arms way before he notices his wings.

To be clear: Heart's condition is self-inflicted. Until Perseverance and Penitence convince Heart to re-embrace being the Emotional Side, waking him up does nothing except put Heart in pain (oh yeah. their only successful method of waking up Heart puts him in excruciating pain :3). Heart doesn't care about changes to his body because he won't be here in a few hours anyways.

But towards the recovery and future end of the AU, when the trio finally make genuine progress and Heart begins to believe again that he is needed, he does notice. It's pretty annoying and demotivating to realize that he has to live with the consequences of his decision, especially because that decision was made with the idea that he is never going to have to deal with anything ever again. Where does he even begin to relearn how to live? Where does he begin to learn to live his new normal?

At least he has Perseverance and Penitence at his side to help him adjust to weaker, colder limbs that arent as strong as before, and to remind him that he will always be needed and wanted despite this. (physical therapy DOES suck though)

(wait until he finally realizes his wings are fucking gone)