the-arthritic-autistic

[the-arthritic-autistic]

If you're disabled you're going to have to learn to ask for help. And you're never a burden for doing so.

It's still a challenge for me despite spending nearly half my life with some level of disability. I get a lot of "why didn't you tell me you were having a POTS episode on the kitchen floor? I could have brought you water or been there!" "If it hurts that much to walk right now I could have refilled your water. Why didn't you say something?" "I could have brought you some food, why did you go all night without it?"

I never have a good answer. "I didn't want to be a bother" "you were busy" "I didn't want to wake you" "you have better things to do" "I'm used to handling it alone". But it's no mystery why I do it. Even before my illness I'd always been taught that my mere existence was a burden and a debt. I don't get called a burden as often as I used to but now it's too late because I internalized ableism and the idea that I was too much for a very long time.

It's the me that was told "go away you're bothering me" "fuck off I'm busy" "If I'm asleep don't bother me, I don't give a shit" "I have better and more important things to do. You're wasting my time " "You can figure it out yourself, you're not a baby anymore" that wants to apologize for taking up space and having needs. That me is so scared to ask for help.

But I've been trying to at least ask for help for the smaller things. And also do the terrifying thing that is allowing others to offer help when needed. It lets that part of me know he won't get yelled at or in trouble for having needs, things aren't like that anymore. I realized it's a crucial thing to learn how to do even if it takes baby steps

[the-arthritic-autistic]

Being a new adult who spends and has spend most of their life in hospital waiting rooms, surrounded by elderly people. Being told "just wait untill you get older". Trying to find mobility aids, with mostly elderly people being seen in the example pictures. Elderly people being mad, because you, a disabled person, took the disabled seat.

Young disabled people exist. Young disabled people are valid. Young people can experience pain. Young people can need mobility aids and tools to help them make life easier. We exist and we are valid.

I hope some day, it will be seen that anyone at any age can become disabled. People are born every day with a disability. Mental disabilities don't dissappear with age, and physical disabilities don't just appear when you become an elderly person.

[the-arthritic-autistic]

i am in so much pain.

this is the part of being disabled that sucks.

i took my meds. i tried to stretch. i tried to rest. i got water. i got food, went to the bathroom, got in comfy clothes, cuddled my cat.

i did everything right.

i am still in pain.

i am always in pain.

[the-arthritic-autistic]

[the-arthritic-autistic]

Love how when you have chronic illnesses, sometimes you go to the doctor thinking it’s a new acute thing and they tell you it’s actually a new chronic thing! It really is buy one get 12 free around here, isn’t it?

[the-arthritic-autistic]

Becoming physically disabled means there's always some kind of nostalgia for your old body but also some kind of pride for the new one. These two feelings can cohexist in the most weird ways and while maybe i'll never be at peace with it and the grief will never end, it also opened possibilities and knowledge i could never imagined before. The kindest thing i can do now is to give those possibilities a chance, to honor this terrible knowledge.

[the-arthritic-autistic]

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[the-arthritic-autistic]

the fact that it's so normal for disabled people to be told that abled people would kill themselves if they were disabled is so fucking disgusting

[the-arthritic-autistic]

shouldn’t have to be saying this, but if i’m having a medical episode in public i should NOT be being filmed or photographed by random strangers. I don’t care WHERE you saw me faint, I don’t care that you think it’s wrong to sit on the floor of a shop, I don’t care that my tics are ‘weird’ to you, and I don’t care that you don’t like me ‘staring’ at you when i’m having an absence seizure. I did not give you permission to document my disability. Don’t film people in general, but ESPECIALLY not vulnerable moments like someone fainting or seizing thank you.

[the-arthritic-autistic]

I've always had chronic fatigue. I remember being twelve, and an adult mentioned how I couldn't possibly know how tired they felt because adulthood brought levels of exhaustion I couldn't imagine. I thought about that for days in fear, because I couldn't remember the last time I didn't feel tired.

Eventually I came to terms with the fact that I was just tired, and I couldn't do as many things as everyone else. People called me lazy, and I knew that wasn't true, but there's only so many times you can say "I'm tired" before people think it's an excuse. I don't blame them. When a teenager does 20 hours of extracurriculars every week and only says "I'm too tired" when you ask them to do the dishes, it's natural to think it's an excuse. At some point, I started to think the same thing.

It didn't matter that I could barely sit up. It was probably all in my head, and if I really wanted to, I could do it.

When I learned the name for it, chronic fatigue, I thought wow, people that have that must be miserable, because I am always tired and I cannot imagine what it would feel like if it were worse.

Spoiler alert, if you've been tired for a decade, it's probably chronic fatigue.

Once I figured that out though, I thought of my energy as the same as everyone else's, just smaller in quantity. And that might be true for some people, but I've figured out recently that it absolutely isn't true for me.

I used to be like wow I have so much energy today I can do this whole list for sure! And then I'd do the dishes and have to lay down for 2 hours. Then I'd think I must gave misjudged that, I didn't have as much energy as I thought.

But the thing is - I did have enough energy for more tasks, I just didn't go about them properly.

With chronic fatigue, your maximum energy is obviously much smaller than the average person's. Doing the dishes for you might use up the same percentage of energy that it takes to do all the daily chores for someone else.

If someone without chronic fatigue was to do all the daily chores, they would take breaks. Because otherwise, they're sprinting a marathon for no reason and it would take way more energy than necessary. We have to do the same.

Put the cups in the dishwasher, take a break. Put the bowls in, take a break. So on and so forth. This may mean taking breaks every 2-5 minutes but afterwards, you get to not feel like you've run a marathon while carrying 4 people on your back.

Today, I had a moderate amount of energy. Under my old system of go till you drop, I probably could have done most of the dishes and wiped off the counter and then been dead to the world for the rest of the day.

Under the new system, I scooped litter boxes, cleaned out the fridge, took the trash out, cleaned the stove, and wiped off the counter and did all the dishes. And after all that, I still had it in me to make a simple dinner, unload the dishwasher, and tidy the kitchen.

It was complete and utter insanity. Just because I sat down whenever I felt myself getting more tired than I already was.

All this to say, take fucking breaks. It's time to unlearn the ceaseless productivity bullshit that capitalism has shoved down our throats. Its actively counterproductive. Just sit down. Drink some water. Rest your body when it needs to rest.

There will still be days where there is nothing to do but rest, and days where half a load of dishes is absolutely the most I can do. But this method has really helped me minimize those, which is so incredibly relieving.

[the-arthritic-autistic]

How to not derail a physically disabled person's post -guide for abled neurodivergents

Hey this is a huge problem and a ton of my and other peoples posts about physical disabilities have been getting overrun with comments making it about mental illness and completely derailing the post.

Here's some things to think about before adding a comment/reply onto a physically disabled person's post:

Is the person talking about disabilities in general? Or are they only talking about physical disabilities?

Do they say specifically that neurodivergent people are welcome to comment? Or do they have a banner or tag that says DO NOT DERAIL

Check the comments and reblogs that are currently there. Are they already overrun with people making the same points you are? Are physically disabled voices getting drowned out?

Is the post tagged with cripplepunk only? (Aka not neuropunk or madpunk)

What is your addition adding to the conversation? How is it related to the original post? Is it shifting the conversation or generalizing it?

Did you actually read and internalize the post or did you only focus on adding your point of view.

Who is the intended audience for the post? Is it you? Are you listening or arguing?

Are you using their language for yourself?

Could the addition stand on its own as a separate post? (If so it probably should)

Think about how you would feel if someone did that to your post and everyone only talked about their problems and ignored your original statement. Think about how angry you'd be if they then said "you're not allowed to get mad cuz I said I wasn't derailing! I love you people!"

Also these questions can and should apply to other posts made by people who are frequently talked over (people of color, fat people, etc.) No your adhd autism does not count. There is a long history on this site of neurodivergent people talking over and taking over entire disability spaces and the problem persists today. This problem is why cripplepunk was created in the first place.

Yes mental illness deserves to be talked about. I'm proudly neurodivergent and often reblog posts from neurodivergent blogs. But you are able to make your own posts, you don't need to take over ours, especially when we are specifically pointing out how our physical disabilities differ from mental disabilities.

Also respect when someone asks you to please delete your addition. Mistakes happen what matters is how you respond to them. Learn from it and move on. Don't cry about the meanie cripples "censoring" you.

[the-arthritic-autistic]

Constantly torn between “I can’t let this illness ruin my life” and “I need to listen to my body and let my body rest”

[the-arthritic-autistic]

disabled people aren't overreacting when we get angry and defensive if you grab our aids without our permission. those are extensions of our bodies. if you've touched my white cane or my friend's oxygen tanks or someone's wheelchair or AAC device without our permission then you've touched or grabbed us without permission. it's not overreacting to defend yourself when part of your daily life involves people invading your personal space and grabbing you and your aids without caring what you want

[the-arthritic-autistic]

able bodied people, ask yourselves this:

is your disability allyship conditional, or convenient?

will you be willing to not use fancy fonts or symbols if someone with a screenreader asks you not to online?

will you judge someone with an autoimmune disorder for having skin infections you deem gross or unsanitary?

when a deaf person speaks differently than a hearing person, will you still take them seriously?

when a nonverbal person needs an AAC or text to speech device, will you still include them in your conversations?

when your mobility aid using friend needs help in an inaccessible area, will you wait up for them, or help them if they ask?

when someone with tourette's is having trouble getting their point across because of tics, will you be patient and listen?

when someone with a stutter is having a conversation with you, will you take them seriously?

will you listen when someone with an invisible disability needs the big stall, or the accessible seat on a bus?

When your college with POTS needs to snack on salty foods, will you find them annoying?

when a person with hyper-mobility stretches and their arms bend out, will you stare?

[the-arthritic-autistic]

IM SO MAD AT THE SHAME SOCIETY PLACES ON DYNAMIC DISABILITIES

yes, I was walking unaided yesterday; yes, I am using forearm crutches today

yes, I was using forearm crutches but left them behind to go to the bathroom yesterday; yes, I need to use them even to walk two steps today

yes, I went up the stairs unaided yesterday; yes, I needed my crutches to go up to the stairs today; yes, tomorrow I might need to scooch upstairs on my ass because I won't be able to walk them

yes, I walked unaided to the car to get my crutches out of the car in the morning; yes, I will use them to go on a walk in the afternoon

DISABILITY CAN BE DYNAMIC, MOST PEOPLE ARENT ON A FIXED POINT OF SUPPORT NEEDS AND MOBILITY, WE'LL HAVE GOOD AND BAD DAYS AND I DONT NEED TO EXPLAIN MYSELF TO YOU

[the-arthritic-autistic]

I think some of us ambulatory wheelchair users are getting pretty close to (or already are) throwing full time users and higher support needs disableds under the bus. And that shit needs to be shut down NOW.

It's the problem of: "how dare they treat us like those people!"

The problem with ableists isn't that they assume we can't walk The problem is they assume we don't need our wheelchairs if we can. That we don't need our handicapped placards or transport vehicles. That we are taking advantage of other "actually" disabled people, that the ableists also don't give a shit about unless they're using them as an excuse to be ableist.

The problem with ableists isn't that they assume we are intellectually and/or developmentally disabled. The problem is they assume that every intellectually/developmentally disabled person needs to be treated with baby talk, dismissal, and ignorance. That they don't see them as people and refuse to listen to intellectually and developmentally disabled voices without making fun of them.

Stop throwing people with higher support needs under the bus. Stop doing what the abled neurodivergent community did to all physically disabled people. Us cripples gotta stick together and fight for one another, not push one down to make ourselves somehow look better to ableist fucks.

[the-arthritic-autistic]

I finally started physical therapy about a month and a half ago and it's going so well! I'm already able to walk longer and further than I was before and I'm so happy about it!

#disability #physical disability #disabled