Im Seeing Sooo Much Misdirected Anger And Blame In All Kinds Of Communities And Im Just Rahhh Its So

really struggling with this atm.

ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.

im exhausted. trying is exhausting.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

My “my songs” 🎀🎧

“my songs” are songs where you go “this song is for me it is mine.”

people can have the same “my songs” that doesn’t make them any less yours, they’re just also someone else’s mine.

its just songs that get you on another level, songs that represent you!

yea..

It’s hard not to feel alienated sometimes by your friends, even if unintentionally, as a physically disabled person.

“Oh, let’s go to this place!”

“How far away is it?”

“It’s only a three-minute walk.”

But you can’t do that three-minute walk. And it’s uncomfortable speaking up that you can’t do that three-minute walk. And maybe you’re well enough that day to push through it, but you pay for it afterwards. The worst part, your friends think they’re being accommodating because it’s such a short walk. However, a short walk to them isn’t a short walk for you. But eventually, you simply start saying no to hangouts because you don’t want to be a burden because you can’t engage in basic activities that are easy for everyone else.

Sometimes you do speak up, and you’ll ask something like, “Can we drive there?” and there’s always pushback. “Oh, it’d take longer to drive there than to walk” or “walking is good for you!” You regret mentioning anything at all; the discomfort and guilt linger.

Structural inaccessibility adds another layer to this problem. You’re forced to say no to countless hangouts that aren’t wheelchair-accessible. Even if you can walk, you might not be able to walk far enough to enjoy the planned outing. People start noticing you always say no, and before long, they stop inviting you at all. Maybe it’s better this way. It still feels lonely.

Ok so, I just remembered how people in the comments of a tiktok video were being assholes, and I want to rant now :3

The video showed two wheelchair users at a train(?), who had just arrived to their stop to find nobody was there with a ramp so they could leave the train. One of them blocked the door so it wouldn't close, and this lasted for 15 minutes. The train was stopped for said 15 minutes. There was a button by the door, that said that it'd contact the driver when pressed. It didn't. People offered to go find the driver, and they came back with the news that there were no people in the platform to put the ramp. In the end, passengers had to go out, and place the ramp themselves, before the train could carry on. The wheelchair users had warned they were coming, and asked to have the ramp put there so they could get down. The platform turned out to have workers, they all just ran away because they'd never encountered the situation in which they needed to do this simple task.

Because of the workers' negligence, the train was forced to stop for 15 minutes.

Everyone's comments?

"Why did they block the doors and stop the train? So selfish" Selfish were workers who refused to do their job.

"What if someone had needed to get to their stop urgently? They shouldn't have stopped the train" It wasn't the disabled people's fault, it was the workers who were negligent.

"Why didn't they just wheel themselves down those steps?" They shouldn't have to risk their (expensive) chairs just because people didn't do what they were paid to do.

"If I had been in that train I would've been pissed, how dare you stop it" And you probably wouldn't have even thought about fixing the problem yourself, would you?

"Entitled assholes" Ok I'll leave you stranded in a train with everyone who could help you get down outright refusing to. Let's see who's an entitled asshole now.

If someone fights for accessibility, as much as it might be a bother for you, you do not have the right to be mad at them. If someone fights for accessibility, it is exclusively the fault of a world catered exclusively for able-bodied people.

So next time you think, "hey the consequences of these disabled people fighting for their rights bother me", instead of blaming them for this, help them solve the issue. This way, next time they will not have to fight at all.

Able bodied people, go out and fight for a fucking accessible world if you're not an asshole.

[ Able-bodied people are encouraged to reblog this post, but try not to derail ]

i dont know what it is anymore its day 14 and its still the same im losing it

on day 5 of a migraine get me out of here

im being referred to multiple new specialists and being put on multiple new medications im so exhausted and im sick of not getting any answers and only short term relief

If you’ve ever related to the phrase “if you want something done right, do it yourself” then you have absolutely no right telling a disabled person with carers how it “must be so nice to have people help you to cook/ clean/ shower”

🩰

top 10 worst experiences is seeing people excel at the sport you once excelled at too but you can never do again because you’re disabled

painted for a whole hour today :3 it felt great.

im so exhausted now though.

i have so much art i need to get out of my brain its all stuck in there while i cant do any 😭😭😭😭😭