Some Of You Clowns Seem Real Confused So Let Me Break It Down For You:

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.

natasha lyonne’s movies/shows <3333

thats all

okay but why are so many medical professionals focused solely on getting their patients back to their jobs and not actually helping the patient feel better. like you will be literally unable to digest food or eat or do anything and they'll be like "that's not good we gotta get you BACK to WORK!!!!!!!!" and so they drag their heels and take up a bunch of time and give you treatments that don't work or take forever to give you ones that do and when you tell them. hey i still don't feel good the first thing is "BUT YOUR JOB!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"

fuck my stupid job. i'm dying. i'm a person not a walking job. help me. a lot of medical professionals will refuse to do their job and instead lecture you about being unable to go to your job instead. unreal.

you forgot the one that says “everything”

How are you meant to just accept that your chronic illness is permanent? I feel incapable of accepting that this pain, exhaustion and everything that comes with it is just.. forever and I can't do anything about it

never stop deal with this so this your periodic reminder that

⬇️

!! if you see someone write different online. unless they explicitly tell you something different. leave them alone. don’t comment on their write. don’t do anything unprompted to “help” without ask. it rude annoying we heard it million times promise. !!

⬆️

some people with language disorders. agrammatism. cognitive struggles. or write with symbol base AAC that not support grammar inflections.

yes we will sometimes write different than you use to.

yes it not “correct grammar,” you so observant (sarcasm).

no it not for fun, no it not choice, no it not writing quirk.

whatever you want say, we probably heard it million times. yes even if it friendly joke - n we appreciate you friendly. but please

great that it “actually help you read/understand better than full grammar.” some people may like you tell them that. but personally not want hear it too - my way write my disability, it about me n it not on purpose it out of my control. would rather you talk about how way break down concept (something can actually control n try really hard at) as easy understand.

“this just gave stroke/seizure/whatever ‘funny’ ‘edgy’ disability” joke. not that anyone make it would listen but. shut up. it not funny to me it not funny to stroke survivors or to seizure havers.

decide stop apologize for exist if it hard read. even if you have receptive language / comprehension / reading / cognitive / etc disability - it unfortunate but conflicting accessibility exist. (yes, do understand actually, because speak from experience.)

if you want know what am say please at least put in some effort to read it.

if after genuine try, still struggle, do what you do when you see tumblr post in “perfect grammar” you don’t understand - polite ask for explain or rephrase or summarize.

it still english, or whatever language person use. unless you actual look for it be turn different language, it still english, no you not need “translate.” (no don’t care that “translate” okay in writing quirk community because again. not writing quirk)

not “fix.”

and. understand sometimes we can’t rephrase in different way, even if that different way include still write different.

personally am allow other people answer “can you rephrase” questions without go through me first, for now, because of this. - but understand this is reluctant compromise. because:

understand sometimes we still sensitive to other people rewrite explain in perfect grammar. because have long history of people refuse put effort in read our stuff but instead always give more attention to people who write perfect, even if their writing not any less complicated than ours. because have long history of be charity case n get unsolicit “help” “translate” when we never ask.

because have long history of be forcibly spoken for n be misunderstood. because people who answer may (& many times do) get it wrong & we then have to spend more effort chase down n correct when we already struggle with communication, n that other version always spread faster than our correction.

so know other people who write different, don’t allow people rephrase at all unless go through them first. please also respect that even if inconvenient.

n on that note.

unless we give you explicit permission to you (like “you specifically can do it” or like above “can do it if someone ask,” or “anyone can do it all times”). don’t. don’t rewrite what we write into correct grammar, into perfect grammar.

don’t give random disabled person unsolicited help. it not friendly it not helpful it rude n annoying. not your charity case. who even are you. no one asked.

none. of. your. business.

not need your fix. get off moral high ground.

n like everything. there some jokes n comments that *some* people who write different may be okay with if they friend with that person make it - sometimes opposite of what this post say. if you not friend with that person then. maybe don’t.

people who write different not all same. sometimes okay or not okay with different things. but. this general see.

the first time you hear about [stuff am tell you in post] probably 456737th time we re-explain it. excuse us for be exhausted n done n our time be tired n angry n impatient.

this been a PSA.

comfort items are important. whatever that means for you, do it.

me carrying a stuffed animal around while being disabled is not "infantilizing disability"

I am an actually disabled person who carries a stuffed animal as comfort bc disability is hard

what's "infantilizing disability" is assuming that just bc I carry a stuffed animal I'm not capable of making decisions for myself. or that having a stuffed animal makes me a less serious, adult person than you are.

im seeing sooo much misdirected anger and blame in all kinds of communities and im just rahhh its so sad and frustrating because i just want to scream that theyre angry at the wrong people

✨✨✨✨Magic Winx✨✨✨✨

the way that when youre a young adult who is disabled/chronically ill older people often say things like

“just wait until youre my age”

“you young people are so soft now”

“when i was your age i wouldn’t have complained like this”

but when a child is disabled they consider it tragic, what do they think happens to disabled children do they not grow up to be disabled young adults? 😭