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YESSSSSS THANK YOU! I got diagnosed with juvenile arthritis when I was 8, and only just now got a mobility aid to help me, because since i've been in remission (touch wood) for the last 4-5 years, whenever I tell people I'm disabled they act really surprised or just... don't believe me... (for some reason)
But I'm so happy that this post showed up for me!
Friendly reminder that:
Young people can have arthritis too.
There are hundreds of life long conditions and diseases out there that are typically diagnosed between 12 and 30.
There is a vast difference between being tired and having chronic fatigue.
Just because you can’t tell that someone is unwell from looking at them, doesn’t mean that you should assume that they are ok.
Many chronic illnesses are life long, and incurable. Many of them are potentially fatal.
If you have a disease like Lupus, on good days you still feel like you have a bad flu, 24/7.
Many of the medications used to treat chronic conditions have side effects that can really affect someone’s self esteem - like extreme weight gain, skin changes and hair loss.
Most chronic illnesses have very little awareness - its unlikely that you’ve heard of Sjogren’s Syndrome, Scleroderma, Ehlers-Danlos Syndrome or Fibromyalgia.
However these diseases can cause symptoms as varied as joint pain, fatigue, constant nausea, kidney failure, pneumonia, photo sensitivity, full body rashes, paralysis, strokes etc.
So please remember that invisible illnesses exist too :)
When my disability was really bad and my handwriting started suffering, I was given the choice of a wrist splint or finger braces so my handwriting would stay 'normal,' but I said no, because I thought people would think it was weird or ask too many questions. I was 8 years old. A freaking 8 YEAR OLD already got influenced by ableist nature.
Please, for the love of any god that exists and the ones that don’t too, don’t tell someone their mobility aid isn’t cute. Don’t tell them it ruins their outfit. Don’t tell them they’d look better without it. Don’t.
Why? Because chances are, they were very insecure about it before. Maybe they still are. And also because it’s fucking ableist. You’re telling them that using a mobility aid looks bad. I don’t care if you think the outfit would look ten times better without it, keep that shit to yourself. You’re not the one wearing it and if the person has decided that their functionality is more important than their appearance, then that’s their choice to make, not yours.
Mobility aids are there to help the person using them, not to appease your idea of beauty.
And, not to mention, mobility aids are fucking cute.
The braces worn on the outside of pants because that’s more comfortable or they don’t fit underneath or it’s uncomfortable otherwise? Rock on. Canes that are decorated or otherwise but let someone get around easier? Fantastic. Crutches that let someone participate in society? Amazing. Wheelchairs that mean someone doesn’t have to be in unnecessary pain? 10/10. Walkers that give someone the freedom to do things they want to? Spectacular. Freaking prosthetic limbs?? Iconic. Insulin or blood monitoring patches that means someone doesn’t have to be thinking about yet another thing while they go about their day? Beautiful. Feeding tubes that mean someone can fucking get nutrients? Cute as hell.
If you have something that makes your life easier and you use it, that automatically makes you smart and hot. You have my permission to hit anyone who says otherwise (with your mobility aid if applicable).
TL;DR: Mobility aids are cute and anyone who says otherwise is stupid.
i tried to join a parent's night to learn more about coping mechanisms and actually TALK TO OTHER PEOPLE THAT KNOW MY DISABILITY but they told me I can't because I'm 'too young' and 'its for the parents only.'
I literally broke down crying on the Zoom call and even then they wouldn't let me in. I tried to somehow listen in to my mom's conversation, but that didn't work.
I swear...
i understand (and fully agree) that there needs to be support for friends and family of disabled people, they need help to understand and be able to better support their disabled loved one and themselves. i am not opposed to those resources existing. i am just so tired of looking for resources for myself, a disabled adult!, and only finding things for friends and family and carers *of adults*. why are all these classes and lectures only available to friends and family of adult disabled people? why are there so few resources for adult disabled people specifically? why, from the organization claiming to help disabled people, are only like a fourth (if that) of the resources aimed at adults actually available to disabled adults and not their close ones.
Yeah, for gym class I need to give a note saying that my form is lacking because I'm disabled so don't take marks off and stuff and one time we had this sub that was having us do squats. I cannot do a squat, because, again, disabled, and my teacher probably put that in the note for the sub or my file or something. Now, this sub saw I wasn't doing it, so he brings me TO THE FRONT OF THE CLASS and asks me why I'm not doing it. I then tell him that I cannot do the exercise as I am disabled. He then goes on and on for the whole class to hear, "OH YOU SHOULD HAVE TOLD ME YOU WERE DISABLED" its like sir I don't think the whole class needs to know this. (also it might have been because my gym teacher didn't put it in their note but still the school probably has that on my file)
Once my friend Henry was accused of wearing wireless headphones by a substitute so she said for him to hand them over so he took them off and handed them to her. Then later on she asked him a question and he didn’t respond so she said it louder and he still didn’t respond. She asked why he was not responding and he said “I can’t understand you ma'am, you took my hearing aids.”
As someone who has an 'invisible' disease, and who seems 'too young to be disabled,' when I was still on my journey to finding the right meds, I got a thing that allowed me to use disabled spots. (I now don't need it, as I am in remission.) If I was not in the great land of Canada, where our (unofficial) slogan is, "Be nice, we're Canadian." (at least what some people say) someone would have probably asked why I was using a disabled spot or that I didn't look it. Just because I'm not using a wheelchair or crutches or 'look disabled' doesn't mean I'm any less valid.
i hope you guys know defending disabled people's right to exist in public also involves defending disabled people's right to exist in public in ways that others might perceive as annoying, unpleasant, uncomfortable, and inconvenient at times. a blatant example is the "slow walker" thing. someone with tourette's syndrome who has issues with verbally ticcing is likely going to have trouble staying quiet in a public space where they're expected to be and doesn't deserve to be met with anger or punishing behavior for it. autistic children (and some adults) getting triggered into meltdowns due to an overstimulating environment. people with hearing problems having their phone on speaker while on a phone call. a wheelchair user taking up part of the road/sidewalk/aisle. people with autism, adhd, hearing problems, or other things that affect volume control having loud conversations. someone audibly talking to themselves, which can be attributed to many things. motor tics. dyskinesia. ataxia. pseudobalbar effect. the list goes on. some of thus may even be potentially triggering for your own issues if you're someone who's also mentally and/or physically disabled, but if you're well aware of how you can't help your response to it, you should be equally aware of how others can't help themselves either. people who aren't able to be disabled quietly and conveniently don't deserve to be punished or met with anger (or turned into a spectacle) for not deciding to shut themselves away.