the best way to explain autoimmune disease to others (via @kuroown when I was in the hospital and this joke she made still makes me laugh)

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@oakleysrecovery
the best way to explain autoimmune disease to others (via @kuroown when I was in the hospital and this joke she made still makes me laugh)
The notion that disabled people who canât work are âuselessâ is a result of the sickening capitalist brainwashing that has plagued our society for decades.
Me: âI am disabledâ
Ableist: âdonât say that! You are not! You do things! you are capable! Do not undervalue yourself. Disabled are those who have to live off of peopleâs compassionâ
VS
Non-ableist: âah good to know. Which disability do you have? How does it affect you?â
Me: âis called (medical terms) and affects me that wayâ
Ableist: * shocked victorian drama gesture * âomg, how are you ok saying that?â * either distances you or is rudely intrusive, still refusing to accomodate your needs *
VS
Non-Ableist: âah, good to know. If you need help with that, let me know how I can helpâ * accomodates your needs and treats you the same way as before *
Every âWhy my disability didnât stop me from livingâ article written can be summarized as having access to resources materially and socially. Which results in a fascinating intersection between ableism and classism, as the resulting inspiration porn - used against disabled folk via the âWhy are you more impacted than this person in the articleâ - essentially boils down to shaming people for not having access to the resources required to mitigate the disability.Â
Just because someone with your illness has a job, goes to school, or can do things you generally cant, does not mean youre faking it.
Dont compare yourself or your illness to them, every illness affects every person differently.
Youre doing the best you can, remember that.
[Image description: A person lies in a hospital bed on an IV and holds a hospital bill. The caption reads, âWhat doesnât kill you, bills you.â]
This week, the Office for National Statistics has added ready-made mashed potato to the UKâs official shopping basket, which it uses to measure inflation, and people are up in arms. Who buys a pre-chopped onion that costs three times as much as a whole one? How lazy do you have to be to choose a frozen omelette over a couple of eggs?
These kinds of convenience foods are an easy target. But for the 13.3 million people in Britain with disabilities â and those living with arthritis, chronic illness, recovering from injury or surgery, or undergoing cancer treatment â convenience foods arenât just convenient: they are a lifeline.
This is an issue close to my heart. Iâm a professional cook, but I also have a chronic pain condition, and there are occasions when I canât even hold a knife. In times like those, Iâm never going to opt for the impenetrable whole butternut squash over one that has already been diced for me.
https://www.theguardian.com/lifeandstyle/wordofmouth/2018/mar/16/pre-chopped-onions-arent-pointless-if-you-cant-hold-a-knife
Donât know if youâve witnessed the controversy created by the new Battlefield video game trailer, but it truly saddens me. People are not only horrified that a woman is portrayed as one of the main characters, theyâre horrified that a disabled woman is playable in their favorite FPS franchise.
Honestly, I donât care much about FPS games. My coordination skills donât allow me to play them well enough to make them entertaining for me. But I donât get why theyâre so angry at the idea of playing as a disabled woman. Theyâre treating is as disgusting, while pretending that theyâre all about historical accuracy.
âScuse me, but when youâre allowing this to happen in your âhistorically accurateâ game without a complaint :
[gif of a Battlefield video game. Three soldiers are riding the same horse, while using flamethrowers]
Youâre not allowed to claim that THIS is not supposed to be in your game because itâs âinaccurateâ :
[picture from the Battlefield V trailer. A woman with a prosthetic arm is standing, while the POV of the picture shows that our character also has a prosthetic arm]
Iâm a female disabled gamer. I rarely get the occasion to see myself portrayed in video games and I often have to be satisfied with either a female character or, even more rarely, a disabled character. Not both at the same time.Â
Disability is often used as cheap way to add âoriginalâ gameplay to a game. Iâm thinking about âPerceptionâ, where your character is a blind woman. The only reason they made her blind was to make her use some kind of echo-location stuff and itâs not even accurate.Â
She doesnât even remember that an object is next to her, you have to tap it with your cane every time her âecho locationâ stuff is no longer working. Iâm not blind, but Iâm pretty sure blind people can actually remember that an object they tapped with their cane is right next to them.
As for autistic characters, my disability, theyâre either very secondary (Iâm thinking Patricia Tannis from Borderlands, and yes, most people donât even know sheâs autistic) or theyâre escort mission (like Amy from the video game âAmyâ, which, I think, has been hailed as one of the worst escort missions video game ever made) or theyâre barely a character (like the psychic kid in âFahrenheit : Indigo Prophecy).
We donât have much intel in who this character is or how itâs going to be portrayed, but Iâm hopeful.
Honestly⊠Guys, you have BILLIONS of game in which you can play your white able bodied man as a main character. You could at least have the decency to let exist the game with the disabled woman as the main character without throwing a frickinâ tantrum about it.
The struggle of brainfog
alarm: take ur pill
me: ok
goes to kitchen and gets water
sits down
drinks all the water
1 hour later
me: wait
When your body begins to fail you
There is nothing left to do but embrace it.
To wrap your broken arms
Around a skeleton that has become more cage
Than body
hey before you call something wheelchair accessible just go ahead and invite a wheelchair user or two over because I almost guarantee you that an able-bodied person is not capable of guessing what is accessible without having ever used a wheelchair solo before
some but not all cool things nobody ever thinks of:
put hand sanitizer or a sink in the accessible bathroom stall, or alcohol wipes outside of it. people who cannot use their legs have to use unwashed hands to roll to the sink, and people who can use their legs are afraid to walk out of stalls because they get harassed and even assaulted.
enough space for wheelchair in doorwayâŠAND ARMS. HOW DO YOU THINK THE WHEELCHAIR MOVES! if I cannot roll through it without scraping my arms it is not accessible
brick paths suck the end
gravel paths suck. make it smooth
a ramp is not accessible if it is too steep. not every wheelchair user is ripped enough or capable of using muscles enough to propel themselves up a steep angle safely. some wheelchair users have heart issues. you want heart attacks? this is how you get them
perfect 90 degree turns suck and are often impossible to turn through
some wheelchairs have foot rests. account for them
wheelchair accessible means wheelchair accessible while alone. if you expect someone to have to be helped out to use your facility, that is not acceptable or accessible
yeah
The belief that someone might be faking it means they donât deserve help is one of the greatest social ills put upon us as a society.
Let me explain:
With every charity there will be at least 5% of people (more or less depending) that look like they donât deserve to benefit from the charity due to their clothes, phone, ability to walk, looking cis or het, looking white or any outwards sign of privilege that they might seem to show.
In actuality, about 0.01% of these people either do not qualify for the charity in question or actually have the privilege that they look like they have.
An example:
You are at a food bank. Mrs. White come up in a shiny Escalade with 4 kids all piled in the back. She comes in to get food for her, her husband, and her 4 kids. Immediately after they leave, you hear one of the other volunteers criticizing the fact that these âobviously well off individualsâ are coming in for food.
In reality: Mrs. Whiteâs husband was in a car accident that cost him his ability to walk for long periods of time, the car, and his ability to work. The insurance company paid for the escalade (a dream car of the husbandâs) and disability allows them to keep the house, but Mrs. White is barely able to work part time to take care of her husband and the kids. They rely on the donations at the food bank to get by.
Another example:
You see a pair of people walking in the pride parade that look cis and het and are being affectionate at Pride. You hear someone snarl about invaders.
In reality: They are both trans or Bi and this is their first Pride being out.
Another example:
A person on the internet talks about their experience with Autism and how it means they have a hard time working. Theyâre self-diagnosed.Theyâve gotten jeering comments about how theyâre faking it and making it hard for real Auties.
In Reality: Theyâre autistic but canât afford a professional diagnosis because they have a hard time working and they showed atypical traits as a kid.
I could go on and on.
Iâve heard it all. From just about anyone. But mostly? Mostly I hear it from people who think that if you donât fit the stereotype you donât deserve help. That you must be in the very lowest place you can be before you get help. But thatâs simply not how it should be.
We should reach kids before theyâre on the verge of death, someone before theyâre on the street, a person before theyâre grasping at the end of their rope. And if we were able to do this, maybe more people would feel comfortable asking before they had no other option than to beg for the scraps that society can leave them.
Societyâs greatest illness isnât those who fake need, but those who think that that tiny bit of people who donât need the help asking for it is worth forsaking everyone else who does.
I wish healthy people understood that getting a diagnosis â getting an effective treatment.Â
There are so many chronic illnesses for which there arenât very effective medications or therapies. Even if your chronic illness has a few good treatments available, they might not work for you, or they might be out of your reach because your doctor wonât prescribe them or your insurance wonât cover them.Â
If you do find a medication or treatment that works for you, it might only alleviate some of your symptoms and restore part of your function. It might come with unpleasant side effects that interfere with your life in new ways.Â
Chronic illnesses are complex, and treating one is never as simple as getting a diagnosis and being prescribed a pill that fixes everything (or even helps).Â
5 Things Not To Do When You See A Disabled Person Under 21
Iâm a disabled high schooler so I experience this shit a lot and I just wanna tell yâall what not to do, not to be mean but to just educate yâall
Assume we donât know things. This happens to me a lot. Iâm a straight A student, Iâm in honors classes, and yet people still think Iâm in need of educational help. I know itâs the cane cause people will talk to me normally, but then speak like Iâm a 5 year old when they see my cane. Itâs rude and honestly disrespectful so pls donât.
âYouâre too young to be disabled.â Holy shit no. Some of us are born with a disabilty and even if we arenât, you donât get to say shit about that. My legs didnât stop working because Iâm young, itâs because I have an actual illness.
âYouâd be better if you went out more.â I have dealt with this so often. When Iâm in extreme pain, instead of getting me pain meds or help, I normally get told I need to go out more. Walk around a bit. Fuck you.
âYou shouldnât rely on that ___â Hell no. If you take away my cane, I can walk but Iâll be in so much pain Iâll start crying. Also? Have you thought that maybe I actually need this cane? Iâm not doing it for attention.
Which brings me to⊠DONT CALL US ATTENTION SEEKING. I promise you that if I could walk without my cane, I would. I donât want this shit, and you saying itâs not real makes it worse.
This is just the tip of the iceberg but hereâs some basic no-nos.
"Sweetie, you're too young to have all these medical conditions"
Me, right after I get a new diagnosis: HA, I knew it! All those crappy doctors who told me I was faking it were WRONG! This is great news!
Me, several hours later when the news actually hits me: *sobs alone in my room*