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Disability - Blog Posts
Transitioning to being a full time cane user, and one of the first things I’ve noticed is now the bus doesn’t start moving until I’m sitting.
That was very much not the case before.
I decided to fix this problem by walking 30 minutes in the rain, so I could go sit in a coffee shop
Soaking wet
Leaking misery and Tiger Balm
(I do actually feel better.)
I’m popping pills left and right
(It’s ibuprofen)
(The rain makes my joints ache)
I’m popping pills left and right
(It’s ibuprofen)
(The rain makes my joints ache)
put spikes on your wheelchair's handles. wrap barbed wire around your cane or crutch so it'll hurt like a motherfucker if someone kicks or grabs it from under your hand. wear a personal alarm and pull the pin every time someone moves you without your consent, leans on your chair, takes a seat on your rollator, taps your hearing aid, steals your AAC device. scream for help when you're abducted. wail like you're in agony when people trip you up or knock into you. take pepper spray to the grocery store. take a knife to the club. leave cards that say "fuck you" under the wipers of inconsiderately parked cars and scratch access codes for bathrooms on the outside of the door. we are not begging for mercy, we're fighting dirty. we have to.
Even though Disability Pride Month is over, that does not mean we stop supporting and bringing awareness to our disabled peers! GO SUCK ON THAT, ABLEISTS!
Happy Disability Pride Month to people...
Who have been diagnosed and been on treatment...
Who have not been diagnosed, but WANT treatment...
Who have been diagnosed, and know almost everything about their condition/disease/disability...
Who have not been diagnosed, and barely know their triggers or how it started...
Who talk about their disability, and make it a part of their identity...
Who don't talk about their disability freely, and might be too scared to make it part of their identity...
Who have been on a long and hard struggle and finally, FINALLY got into remission...
Who are still trying to get into some 'better' state...
Who have an invisible disability and don't 'feel disabled enough'...
Who have an invisible disability that has been over-dramatized and hear jokes about it constantly...
Who have been in remission for a while, and don't feel like 'enough' while talking to disabled peers...
Who have not been diagnosed, and sometimes feel like their experiences 'aren't enough' to warrant the disability...
Who have a physical disability, but didn't realize the mental toll it would have on them...
Who have a mental disability, but didn't realize the physical toll it would have on them...
Who got diagnosed rather young and have lived with their disability for most of their life...
Who are only just learning how to cope and live with their disability...
Just like me.
Happy Disability Pride Month, ya'll!
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.
Do not tell someone their mobility aid isn’t cute.
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.
Yeah I met someone who had an invisible disability like me and they had just gotten steroid injections into their knees so it was really painful, so they were using the disabled spot on the bus but a whiny lady came up and told them they couldn't use it??? So they had to argue with this lady all along the bus ride about what in invisible disability is.
using disabled stalls, seats, and parking spots without needing them is not innocuous. these aren't just things that make disabled people's lives easier (although that's reason enough). they prevent us from being injured or in distress, and allow us to take care of our needs. removing our access to that can put us in danger. stop it.
also, to the invisibly disabled people reading this - including mentally ill and neurodivergent people - if you need these accomodations, please continue to use them. your needs matter. do what you need to stay as safe and healthy as possible.
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.”
Negative bonus points caused by the rare and wondrous father
- Since I held onto his arm with both my hands it gave him the opportunity to fling me around like a whip. He took this opportunity three times before concluding that my hips must’ve been acting up.
- There is nowhere to sit in this god forsaken coastal town. The only bench I did have a chance to sit on quite literally had a guard dog. I am now sat on the concrete, my ass is cold.
- And after I stand up again I’ll have to walk back to the car with the mistake I made, aka buying four bottles of flavoured water at Iceland. I am. Not excited to try balance that weight so my shoulders don’t get messed up as well.
I DAMNED MYSELF IM ON THE MOVE AGAIN
A day on the town!!!
My dad is being used as my walking aid. I am. In so much pain. Everything from the neck below feels numb. I feel like a pot of boiling water.
Someone save me I need a bed.
A day on the town!!!
My dad is being used as my walking aid. I am. In so much pain. Everything from the neck below feels numb. I feel like a pot of boiling water.
Someone save me I need a bed.
long kinda vent ahead hooray. it's kinda system-flavored this time. tastes like lemon. 🍋
sometimes it's really hard being a system, especially one that is so, like, hyper-aware of everything i have. every disorder, every disability. thing is, i can't do anything to fix myself!!
i've literally told my own mother about separate identity states and the memory loss and whatnot. she said to my therapist that i "was right about the dissociative thing," even if we were only diagnosed so far with unspecified dissociative disorder. the dmdd diagnosis typically leads to an adulthood diagnosis of bipolar, which i'm actually scared about. i fit much more into borderline, just like my mom.
ugh, i don't know. i don't even know what i'll be diagnosed with, come adulthood. i mean system-wise. we're a trauma-endo system (which some fuckheads will already think is enough to not warrant a diagnosis, thanks for that) that doesn't switch from the main host a lot. we have good communication when i can switch out from the front, but we don't have complete memory loss. if anything, it's more like emotional amnesia and the memories are kinda gone too, but they can come back at a later date.
for example, our medic fictive had to call the cops (they didn't even do anything either, but it was our mom's last resort) one night at 2 am last year. i don't remember it well, but i remember it happened. he was terrified that night and he couldn't switch out.
but what the fuck could we even be diagnosed with? i want a diagnosis. i want to figure out exactly what is going on with my brain. most of my parts aren't exactly same-y. they're different people, at least most of them are. sure, we have to mask a little bit, but they think and act a little different than me. we have the memory loss, but i've always had a horrid memory, even before our late syscovery in january of 2021. but i sometimes feel like it's not "bad enough" to warrant a full-on did diagnosis.
it just confuses me. a lot of the times before, my mom would see me looking up disorders and go "oh, shi's just looking hirself up again." but i'm just that aware of what's wrong with me. people either see me and disregard my research, or i just don't know how to help myself. those are the 2 results. yes, i have a therapist. yes, i open up to her and she makes me feel safe, much more than any other therapist i've had in the past.
i just don't know how to help myself. to help us. i want to live in functional multiplicity, mostly because i get so tired and i get so lonely. i don't want these people to be gone at all. if anything, they give me someone to talk to, even if our headspace isn't permanent and we don't remember our own conversations, even if we jot them down. my memory absolutely sucks. i can't remember faces, names, or even voices sometimes. i can't remember people.
basically, i love and yet hate being disabled by anything my mind and body throws at me. i like the community, i like learning about myself. i hate the symptoms, i hate the confusion and the doctors not being able to do their fucking job. ahem, looking at you doctors who only tested me for SLEEP APNEA, which i definitely do not have. now they want to test me for narcolepsy... which i probably don't have, either.
sometimes i wish what it was like to be of sound mind and body, even if it was for just one singular day.
*getting on an empty bus and sitting down in a seat at the front of the bus (reserved for disabled people) because my legs hurt and the other seats are harder to get in/out of*
Me: I feel so bad for using this seat, it's supposed to be for disabled people and I'm just hogging it so nobody else can use it who might need it.
...
Me: wait a second... I am disabled...
I'm having debilitating and/or concerning symptoms that are being added/changed on a near daily basis. Something is very wrong but the only thing i can do is wait for my next test. What if that one comes back normal too? What if i get fired for being too unreliable? What if it kills me? I'm so fucking anxious and there's literally nothing i can do
I keep forgetting that the body and brain that I have are actually Severely Fucked and Debilitating, and that most other people don't have to deal with any of that
I always have to make sure I fit the standard of the people that have it on easy mode, no fucking wonder I'm so exhausted
I wonder if I'll ever get to the bottom of all the fuckin things wrong with me
projecting jayvik vibes onto my partner since he's the broad strong boyfie who can pick me up no problem and im the sickly one with the cane who calls him an idiot while we're in bed watching GOT 🤩🙂↕️
this month is july, yall know what that means…
Art fight! …..
Okay, not just that….
Fourth of July?
Well, yeah, that is part of it, but I’m actually referring to
Disability Pride Month!!!
To everyone (but especially other disabled folks);
Whether your disability is physical or mental, visible or invisible, cureable or uncurable, professionally diagnosed or not, or something you’ve been grappling with for a while or just recently…
Always remember these things!:
You are just as valuable, worthy of love, and deserving of respect as non-disabled folks;
There is no such thing as “not being disabled enough” to seek out the support you need;
It’s very okay to ask for help— you are not weak for doing so;
You are not lazy, useless, or a failure for merely experiencing the symptoms you experience;
Your life is not inherently less meaningful or fulfilling, just because you’re unable to do as much as a healthy person;
I’m very proud of you all for pulling through and getting to today, even with all the struggles (yes, even if I’m a stranger to you /gen)
I hope you all have a wonderful July and beyond! Be sure to take care of yourselves and be kind to yourselves!
Anyway, people with brain damage I love you. People who have had strokes I love you, especially if you're told you were "too young" to have one. People who acquired your brain damage by less common means such as infection, lack of oxygen at birth or degenerative disease, I love you. People with moderate and severe brain damage, I love you. People who lost their sight or hearing or ability to speak because of their brain damage, I love you. People who have paralysis from their brain damage, I love you. People with amnesia and severe cognitive issues from their brain damage, I love you.
You are not a punchline, you haven't lost your humanity, your thoughts and opinions are as valuable as anyone else's. We deserve respect.
Thank you for the reply! Advocating for your needs is so important and this is super helpful!<3<3
Hi! In response to this post https://www.tumblr.com/talkethtothehandeth/752350930418139136/if-you-ever-need-accommodations-for-a-venue-its could you maybe provide an example of what you said asking for accommodations? I feel like that could be really useful to me I just don’t know how to ask, how much to explain should I like full on Include doctors notes? just like how to go about it in general. Thank you!
Hope this isn’t weird! I just found your blog and I love your posts
Thanks for reaching out! It wasn't weird at all and that is very sweet of you to say! My anons are always open if people are too nervous to ask publicly, and my DM's are always open to anyone. I am unafraid of internet criticism, and I do not close them for the people who need or want to talk with me. I will share exactly what I wrote in the e-mail. For this occasion, I was specifically asking about bringing a bottle of electrolytes because I wasn't sure if I could get to concessions and to my seat (I would have to find the elevator, the venue is pretty large) in the upper mezzanine in time before they close the doors to the show. And venues usually have a "no outside food/drink" rule. Below the paragraphs I will include a reasoning for wording indicated by a *
"Hello,
My name is [your name], and I am writing in regards to my attendance for the showing of [the show's name] on [date] at [time] and accessibility/accommodation needs.
I was not able to buy an accessible seat beforehand, but I was able to find a seat at the end of a row which will help me step out of the room without disturbing the other patrons if need be should I encounter any sort of medical episode that I can manage privately. I might also use a mobility aid (a forearm crutch) to help me navigate the building with less pain. I would let a worker take this for the duration of the show, excluding the intermission, if it would be in the way of an aisle.
*an employee sometimes takes your unused aid and sets it safely in a corner that way other patrons can navigate the aisles without tripping!
Mobility aside, I am reaching out to ask if I am allowed to bring my own drink (which would be one bottle) to manage my symptoms as I require electrolytes daily at the request of multiple physicians due to a condition called postural orthostatic tachycardia syndrome. This is a condition that causes me to experience presyncope (symptoms before someone faints) and syncope (actually losing consciousness); the electrolytes stave off my symptoms enough for me to feel comfortable that I, most likely, won’t experience a medical episode during the show time.
*you do not have to share your conditions ever, I just find that sharing mine along with a reasoning will help someone understand more as to why an accommodation is needed— it will make someone less likely to say no.
I understand that establishments rely on public or private funding, and I respect that and will be able to buy concessions to support the business as well. However, I will need to bring many medical supplies (which will fit in my backpack that meets the size limitations listed on your website) and my medical needs include the drink that I am instructed to consume in order to manage my symptoms. This is the only accommodation I ask for if possible as I have everything else I need to carry with me in my medical backpack.
*if you bring a bag, the venues will have size restrictions listed on their websites so that way they can fit securely and not get in the way; they usually search bags too for other's safety. My bag is full of medical supplies and will probably still be searched just because of their rules which I am more than fine with.
Thank you for your time, and I look forward to attending this show.
All the best,
[your name].
Keep reading under the cut
This e-mail was received well, and I even got called by the venue to tell me that they had open seating on that night and would move me to the floor for no extra charge. The lady also asked for me to come a little earlier that way the employees could help me to my seat (I will be letting them push me up a ramp as I am not strong enough for that) she said they have a few other disabled people who will need help as well, and that by coming early I could help their team. They told me that they would have a staff member waiting for me, and before the show starts I will ask to go to the concession stand to buy my snacks before hand and most likely stay in the main area during the intermission since there will be a lot of people to navigate around in my chair. This will be the first time I've ever been alone while in my chair, but the team has made me feel more confident that things will go smoothly while I am there.
It is always worth reaching out, even if things might not go as smoothly as this— I hope that this is a good template to help you in the future. It can be scary to ask, but all I was met with was the lady saying, "We want you to be as comfortable as possible, so anything you need to bring to help you, please feel free to bring it." This is also the first ever time I asked for accomodations, and it worked very well.
I will make a new post before and after the show about how things go and how the staff treats me during the night, and I'll tag you if you'd like.
katsuki with a disabled partner
writing this because i’m having the shittiest flare rn and wanted some comfort fluff so here u go.
this is where i think katsuki (aged up) would truly shine as a partner; he shows his love in actions and in touch, and caring for you is his way of doing that. katsuki can more than handle the strain disability adds to a relationship.
anything you need on your worst days, he will do it: hold you, reassure you, bathe you, brush your hair, make your food, feed you, help you change, carry you across the house, catch you when you fall, schedule appointments, you name it. nothing is too difficult or off limits because he loves you. he insists on caring for you - almost overbearingly so - because it makes him feel less helpless when you’re struggling.
he will drop everything to be by your side. as a pro hero that’s not always possible, but if there is a way, he will find it. he’d never tell you, but the times he can’t be there when you need him is what keeps him up at night.
refuses to let you push through when you’re struggling and is the first person to insist that you put your well-being before anything else. (which you think to be ironic coming from someone who by all metrics is a workaholic.)
and yes, he will talk to anyone who gives you flak if he has to. he has leverage and he’s not afraid to use it (much to your embarrassment at times). refuses to let you feel guilty for what’s outside of your control.
gets angry when you try to do something without his help. “the fuck you think you’re doin? i’m right here. i’m gonna take care of you.” also gets mad if you have a bad flare, get injured, etc. and you don’t tell him immediately.
at the same time, he’ll eventually learn when to back off. he doesn’t want you stripped of your independence. but push yourself too hard after insisting you were fine? you bet he’s gonna give you a little shit for it (lovingly).
i don’t see him being put off by known long term disability early on in a relationship, esp. if a deaf!katsuki hc is involved.
sudden disability due to health changes or trauma: it’s almost like it doesn’t phase him because he just handles it. he’s dealt with a fair amount of shit himself before you and with you by his side. it’s not easy, but it’s familiar, so he knows what to do.
lots of comfort sex - for both of you. yeah, he has his rough, mean side (which you love), but he’s more than capable of making love. when you’re struggling but still able, he fucks you in a way that makes you believe everything will be okay. he looks you in the eyes and loves you so tenderly that only you might believe he’s the same man everyone else knows. he doesn’t just do it for you. it’s a comfort to him, too. he needs the world to fall away for just a moment so he can love you. it doesn’t fix life’s problems or keep him from worrying about you, but it’s healing and eases the pain.
bonus: comfort kink for the same reasons. whether it’s light impact play to ground you when you’re dissociated, encouraging you to slip into that subby headspace that makes you feel safe, or edging you until you can’t think to keep your mind occupied, he’s okay with it. i feel like he’d also be surprisingly soft for moments like this.
If you make fun of people for harmless actions you will inevitably find yourself being ableist.
i’d like to humbly recommend pokemon? ik sword and shield can be difficult because they have more time based events now (ie running away from pokemon in tall grass) but any of the previous generations, if available, should be super accessible
Hey does anyone have a list of more popular games that someone could play with just one hand? My friend doesn’t have use of their right hand but wants some fun time killers.
They’ve got a nintendo switch and are looking for more lax games (animal crossing, night in the woods, Kentucky route zero, ace attorney, etc) but I appreciate literally any recommendations.
Please boost if you’ve got followers who might be able to help answer this!
Thank you!
OC art! This is Qibs!
She’s a Holland lop bunny who can’t hear or speak. She forgives herself for her disability.
Her inspiration was from actual lops - many truly are hearing-impaired because rabbit ears are not designed to flop in that position. The canals in the ears can decay over time. Qibs’ ears were so large and heavy that she lost her hearing.
She is Australian and speaks using Auslan, or Australian Sign Language. Her name is pronounced “Kibs”.
OKAY PEOPLE LISTEN UP
THIS:
Is the petition to save Craig of the Creek from having its fifth season and spin-off being cut in half by Cartoon Network.
This show celebrates diversity in a way that hasn't been done since Steven Universe. It has incredible rep in the form of queer, BIPOC, and disabled characters, and more. Don't let CN give it the short end of the stick.
One of the cool things about learning about disabilities is that I'm finding words I didn't have to describe things I didn't know were abnormal.
One of the worst things about learning about disabilities is that I am constantly going "oh! I could use that, lol, that would help me a lot! ... I'm stealing from real disabled people(by imagining using a mobility aid) and also why is everything designed to be so hard for people who need canes???"