#disability problems
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i hate that bad backs aren't viewed as a disability. i hate that "Every back is a bad back" mentality. i hate minimizing back pain by encouraging people to "just take a tylenol". i hate that people who throw out their backs regularly are told to "just sleep it off" or even worse "just exercise, it loosens things up." i hate when people say "my mom has a bad back and she just powers through it."
let people with bad backs be disabled and talk about how much pain we are in, and how much of a disability living with a weak, broken, eroded, degenerative, or paralyzed spine is. let us talk about the horrors and dangers of spinal surgeries. listen to us when we talk about the limited options for pain management and how it is an absolute nightmare to get treated for back pain and receive medication that actually works.
having a bad back is a disability. being in back pain all the time is not trivial. having back pain so bad you can't sit or stand is serious. feeling shooting pain into your legs is a big deal. feeling like no matter how much you stretch or take medicine your back never seems to feel better is a genuine medical issue. listen to disabled people and stop dismissing our pain.
#cripple punk#disabled rights#disability advocacy#back problems#bad back#crip punk#cpunk#disabled#disabled issues#disability problems#disability rights#our writing
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Life with chronic pain is like "my body is on fire but I guess I'll function anyway"
#disability#disabilities#chronic community#actually disabled#chronic illness#cripple punk#chronic pain#disability problems#disability life
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It's the little things that hurts.
The way people don't get you can't do the things they do, at least without costing you so much.
The way the doors of shops or buildings used to fly open at the slightest touch and now they seems to weight a hundred tons.
The way my mother in law asked me if I wanted orange juice and when I said yes she put two oranges and a old manual juicer. I was too ashamed to admit how much it would cost me to do it this way. So I did it, fighting the tears and then couldn't use my arm for a week.
The way I can't get out of my apartment sometimes because even if there is a lift, there's also stairs between my apartment door and the lift and between the lift and the building door. Why make a lift at all if it's not even accessible because of the stairs? (I can't move out. I have neither the money nor the spoons.)
The way the new building the local bookshop moved into makes things so much harder for me than the old one. There was so much unused stairs that I could sit and rest for as long as I needed. Now in the new building the stairs are so narrow you can't think of sitting on them, you'll just block the way. And there's no chair or bench anywhere in this 4 stories building. You just can't sit and rest there.
The way the city is getting rid of public benches and putting in their stead blocks of concrete with metal spikes on them to dissuade homeless people to sleep on them, which is wrong on its own, but also impacts disabled people. There's less and less places where to sit and rest during a walk through the city.
It's people laughing when I can't open a bottle of soda.
It's people gossiping behind my back, saying "oh they are a junky" because I takes so many meds, including the ones for the pain, but not only for that.
It's me being too ashamed to be disabled at a relatively young age and having an invisible disability. It's me being too ashamed to ask for accommodations. It's me being too ashamed to ask for a seat in the bus when all of them are already taken. It's the society making me ashamed of myself.
It's life itself, mocking me, and the world joining in the good laugh at my expense.
#physical disability#disability problems#disability#disabilties#disabled#actually disabled#actually physically disabled#actually chronically ill#chronically ill#chronic illness#chronic pain#chronic fatigue#rheumatism#ankylosing spondylitis#joint pain#ehlers danlos syndrome#rheumatoid arthritis#rheumarthritis#accomodation#disability awareness#disability aids#arthritis
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Weird rant but I’m EXHAUSTED by the fact that medical supplies are either mind-numbingly clinical or literally made for children.
I’m sick of having to buy adhesive patches for my CGM that are covered in crayon scribble and unicorn patterns because all the rest are depressingly plain and I just want something colorful and FUN.
I’m sick of disabled young adults being completely overlooked by society because the stereotypes only include “decrepit elderly person” and “poor innocent child who doesn’t deserve the horrors of a disability”.
I’m sick of the idea that disabled people are incapable/undeserving of being happy and enjoying life and should just settle for a Dull Gray Existence, and if they ARE happy, then they’re an ✨amazing special inspiration✨ who’s going to constantly be put on a pedestal and infantilized to hell and back.
#actually disabled#disability#disability problems#disability pride#type 1 diabetes#t1diabetic#tw ableism
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Ableds really dont get that plans being made, changed or yes, even cancelled (especially when you have already used spoons getting ready) last minute is really annoying and distressing in a different way than it is for them.
Yes for you (abled person) its annoying the swimming pool down the gym is full of kids so you dont want to go. I, however have used spoons already getting ready to go & cancelling last second, so now I have to get changed back out of my costume and unpack everything from my bag, making me more tired & in pain, is infuriating.
And dont ask someone “are you annoyed now?” if you’re going to get pissy if they say yes… Yes, I know its not your fault but its still annoying
And they’re saying about going this evening now, saying this AFTER I’ve already changed again out of my costume and into my normal clothes… like no, the opportunity has been and gone. I’m tired, in pain and now I’m really annoyed, I’m not going and putting myself though even more stress
#abled people’s bullshit#ableism#disabled#disability awareness#disability problems#spoonie problems#spoonie life#spoonie#chronic pain#chronic fatigue#chronic illness#fibromyalgia#chronic fatigue syndrome#me/cfs#cripplepunk#crip punk#physically disabled#physical disability#neurodivergency#neurodivergent
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Y'know people became INSTANTLY less curious and invasive about my disability as soon as I had my crutches painted.
Once there was no more medical stickers all over them and the crutches were now a matte pink instead of hospital metallic, there were no more questions about "what happened???" Or "I hope you feel better soon". And I think I know why...
When people see crutches that look metallic and have stickers on them, they think you've just gotten out of the hospital and that this is some new development (maybe a sport™️ injury or something) but with customized or non standard medical aides, it looks like something more permanent...
And that makes them uncomfortable.
The permanence of a disability, something that won't go away, weakness that won't go away, and knowing that it could happen to them as well. Not to mention that no one is taught how to interact with people with disabilities that are permanent (I might talk about non permanent disabilities at another point, but that's not important here) there only people that they're taught to interact with who have permanent disabilities are the elderly or children who are terminal, and they are extra nice to them and expect them to die at any time. But they don't know how to handle someone who has a permanent disability and aren't going to die any time soon.
People still stare at me. But people aren't willing to interact with me about my disability. Which is actually sort of sad. When I got them painted, I was so proud of my matte pink crutches, I was wanting to hear compliments from people who know me, or even strangers! This whole time, I've only received one compliment on my crutches, and I believe it's because the other person also has a disability.
If you're not disabled, yeah, we don't want you all up in our business about our disabilities, but it's totally okay to compliment us on our medical equipment and aides and stuff. Don't just ignore us
#actually disabled#disability problems#disabled problems#ableism#pots syndrome#fibromyalgia#mobility aid#forearm crutches#crutches#long post#ableds#abledsareweird
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aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
thanks for coming to my ted talk on how the government makes me feel as a disabled person
#chronically ill#disabled#chronic fatigue#chronic pain#disability#actually disabled#chronic disability#disabled community#spoonie problems#fuck the government#disablity#disability problems#disability benefits
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I follow tons of disability/chronic illness/mental health tags and I keep seeing memes or infographics without alt text or image IDs. This is not okay for content of any subject matter, but its beyond ridiculous for these spaces in particular. You can’t call yourself an advocate if you are declining to use accessibility tools like this. There are absolutely no excuses, especially with the technologies we have now. Most devices can read and copy the text out of any image, for example.
Basically if it’s not worth including everyone, it’s not worth posting. Make it accessible or don’t post it. Thank you
#accessibility tools#disability accessibility#disability advocacy#alt text#image id#text id#screen readers#disability accommodations#neurological disability#physical disability#invisible disability#vision impaired#sight impaired#blindness#accessibility#inclusivity#disability rights#disability community#disabled community#chronic illness community#disability vent#chronic illness vent#neurodiversity#disability problems#disabled rights#disabled things#queer disabled#disability representation#accommodations#disabled representation
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Having a wheelchair and a shower chair would make my life easier, but I know that my family would have problems with me having that around here. I can barely use my cane here. I doubt I'd have much luck getting any other mobility and disability aids.
-Amber (any pronouns)
#disability#chronic illness#disabled#actually disabled#cpunk#cane user#cane user problems#disability problems#wheelchair user#shower chair
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I fucking hate doors.
They’re heavy and when I have my cane let alone my crutches they’re a fucking nightmare to open.
Why aren’t there more accessible doors? Why is nearly every “accessible” or automatic door not working or up a goddamn flight of stairs???
#disabled#chronic pain#disability#actually disabled#chronic illness#physical disability#hypermobility#pots#pots syndrome#accessability#accessibility problems#disability problems#inaccessible#inaccessibility#automatic doors#ableism#ableist society#ableist
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I’m desperate. I want to play the sims so bad, but I’m physically disabled and have to be in bed most of the time. I’ve got my pc hooked up to my tv, and I even have a couch master. It still requires me to sit-up. So I have this wireless keyboard. Was thinking I could buy a wireless mouse and figure out some way to use the mouse in bed. Maybe even get those small little keyboards and just assign keys to be different hotkeys. Does any know a mousepad that would work? I was even considering using a small childrens hard cover book under one.
I’ve tried Reddit with minimal results. My orthopedic pillows help me a lot but even that’s not sitting up high enough for the couch master desk. Lap desks don’t work for me because putting weight on my leg causes pain :(
If anyone just has a similar setup I’d love to hear about it.
#disability#disabled#disability problems#osteoarthritis#cripplepunk#chronic illness#disabled rights#disability awareness#actually disabled#chronic pain#hip pain#crip punk#physical disability#physically disabled#arthritis#cpunk#serious post#andy speaks
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shoutout to every disabled person who has to spend a lot or most of their time in bed, on the couch, or laying down. here's to everyone with any kind of mental illnesses or neurodivergence that can cause depressive episodes, migraines and sleep disruption, here's to everyone with chronic fatigue syndrome/myalgic encephalomyelitis, here's to everyone with chronic pain, fibromyalgia, lupus, arthritis and multiple sclerosis, here's to everyone with bad backs, here's to everyone with chronic gastrointestinal issues, here's to everyone with chronic reproductive health problems. many of us have to spend most of our waking hours resting and we're not here by choice, but we're making the best of things. here's to us bedbound bitches
#cripple punk#crip punk#disability advocacy#disability rights#disabled rights#disabled#disability#disabled community#chronically chill#chronic pain#actually disabled#disability problems#disability culture#disabled culture#chronic pain culture#fibromyalgia
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This is your semi regular reminder that disability doesn’t always look like someone sitting in a wheelchair. That’s an ableist and harmful angle to take.
#disability#disabilities#actually disabled#chronic community#chronic illness#cripple punk#disability life#chronic pain#disability problems#mental health
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What the h*ll is "basic hygiene" anyway?
If you're like me, you've been struggling with hygiene for a long time. I'm neurodivergent, I have chronic fatigue and chronic pain, so yeah, it's been hard, my whole life.
Here's a few tips that helped me or some of my friends.
1. Redefine "basic hygiene"
No, really. Redefine it. Neurotypical and able-bodied people will tell you all can of things about what is "basic" hygiene.
The rule is: do what you can. That's it. The rest of the post will be tips to increase what you can do. But in the meantime, just do your best. You're fantastic the way you are.
2. Time
There's two thing here.
The first is: find the right time for you. It's not always easy, because we often have obligations, and we're supposed to be clean at those right moments. It's not easy. Sometimes it "helps" because it gives us that "boost" we needed to start getting clean, but most of the time it's just stressful. So instead find the moment that works best for you. I know there's moments in the day when it'll be easier for me to start tasks that I would struggle with at an other time, but I prioritise other things instead for a reason or another. Try washing yourself then, even if people will tell you it's strange to have a shower at three pm. Who cares.
The second is: divide to conquer. You don't have to wash ALL the parts of your body at once. You don't necessarily have the energy for it and it's okay. Also it can feel daunting to face that long list of steps. A body has a LOT of parts to wash and clean. Really, that's scary and exhausting. So the solution might be to do smaller things here and there. Do what you can when you can, that's okay. At least you've done something, that's great!
You are also allowed to take breaks in the middle. It can help if you are tired, or if it makes you anxious.
3. Wipes.
I personally hate washing with soap and water, whether it's a bath, shower or just at the sink. It takes time, it's a lot of steps, and it feels horrible. I do it when I can, but I don't enjoy it. The partial solution is wipes.
Baby wipes are great, they're soft, some smell good but faint, some has no odor. You can clean yourself quickly without rinsing. And they don't let that terrible feeling on your skin.
There's wipes made for your private parts. Which is an important part to clean. Also wet toilet paper is good. (For private parts wipes, buy the organic ones, you don't want anything too harsh there)
Make-up removal wipes are not just to remove make-up. They do clean you face.
Don't use antibacterial wipes though. At least not regularly. They are too harsh for your skin, you'll just damage it. Also too much antibacterial stuffs just make bacterias more resistant.
Bonus point: wipes can easily be carried in a bag. Handy.
4. Charts and lists and apps.
Whether you forget to do it or it you have done it already, or you can't get motivated, or you can't manage to start washing, or there's so many steps you get overwhelmed, or you start but can't remember what to do next, etc., those tips might help.
There's apps like Habitica (it's the most well known but there's others) that help you building habits and remembering to do stuffs and making it fun (help with rewards). It's about general tasks but can be applied to washing. A friend also told me there's a pokemon app to brush your teeth but I haven't tried it.
If you get overwhelmed by the steps and get lost in the middle, making a list of those steps, laminating and putting it in the bathroom near the sink or in the shower can help you keeping tracks. You can even put a dry erase marker near the list to check what have already be done.
5. The "bath buddy"
If you live with someone, you can ask their help.
I'm not saying they have to wash you. Or maybe I am? A friend takes his showers with his boyfriend to help getting motivated.
It can just be your platonic roommate behind the door talking to you, telling you funny stories.
Having company can help start the task and make it more enjoyable which help in itself but also make it less daunting the next times. Having a bath buddy also helps if you get lost in the middle of a task, they can tell you what the next step is. They can also keep you on tracks and in the present (I know I tend to dissociate a lot in the bathroom). And they keep your mind off the bad stuffs (body dysphoria for example, or sensory discomfort)
6. You're never too old for "kids' stuffs"
Because you're never to old for fun stuffs.
No, really, there's no reason why you should deprive yourself of something that would make washing more fun.
Wash your teeth with bubblegum flavored toothpaste.
Play with bathtoys. Buy those little plastic boats and those little squirting animals. (Seriously, the fact that the only fun thing for bath for adult is bubbles is a crime)
The word here is "fun". Make the bathroom fun. Buy a shower curtain with cute elephants playing with water. Put adhesive ducks on the tiles. Make that darn room a place you want to be in, not just to distract you from the bad stuff but to enjoy your life.
7. Teeth. Oh no, the teeth.
First thing: as I said, you don't have to use that "adult toothpaste". The menthol contained in it can be sensory hell. You can use kid toothpaste, it cleans just as well. If you can't use any toothpaste try brushing without it with just water. You can also try toothpaste tablets (you chew on them and then brush). You can try mouthwash. You can try oil-pulling. The point here is to remove some bacteria from your mouth.
About brushing. There's different hardness in toothbrushes. If you're using hard, try medium. If you're using medium, try soft. If you're using soft, try baby toothbrush. If no toothbrush works for you, try a wet cloth, or your finger. Try using toothpicks to remove the remains of food and then use mouthwash.
If the storebought mouthwash doesn't do with you, make it yourself. There's recipes online with essential oils (optional, but maybe there's one you might like), baking soda and water. (I don't recommend using lemon juice, it might damage your enamel.)
My friend just told me I should mention dental floss. I personally hate it, but it might be useful to some of you. It's probably more effective than toothpicks. They also comes mounted on these little plastic sticks if you struggle with the thread alone.
8. Chair
No, really, you have the right to sit down during washing. Buy a shower chair. Put a bench on your bathtub instead of struggling to stand up. Put a chair in front of the sink to sit when you brush your teeth.
You don't have to be physically disabled to use a chair to wash. And if you're disabled there's still no shame. Standing up can be boring, it can be painful, it can be tiring. So sit. You are allowed.
And if you prefer standing, do. You can pace. You can dance. You can do gymnastics. (Just be careful if you're brushing your teeth, okay. Or if you're in the shower. Don't hurt yourself.)
9. Music
If you don't have a buddy to talk to you, music or even podcasts, anything to listen to, can be a nice way to help. They makes the experience more enjoyable. They keeps your head away from the bad sensory experience or the awareness of your own body.
I also find using the same playlist useful to keep track of the time I've been spending in the shower. I even time the steps on the tracklist, I know I washed that part of my body for long enough if that song is over, I need to do the next step.
Also, for me me music is part of the ritual. It helps me to get in the right mind, it motivates me, it makes the routine.
10. Multi-purpose products.
I've seen all those beauty posts about "layering". It's nice if you have the energy and the time, but no, it's not for me.
I hate moisturising creams. I really do. They smells funny, they feels gross and sticky, and it takes forever to apply. It's an unnecessary step for me. But I have dry skin (at least on my body). The easy solution is to use surgras soap or surgras shower gel. (Not just the "moisturising" soap, that won't hydrate as well.)
I don't just remove the unpleasant experience of moisturiser, I remove a step. I save energy.
Also, multi-purpose products help with organisation, there's less things to think about. There's less risk of taking the wrong bottle because you're too headfogged. Less chance of chaos in the bathroom.
I personally can't do that for everything. I'd like to have one soap for everything, but my body skin and my face skin and my private parts and my hair all need different stuffs. But I do try to keep things to a minimum, because the number of products can be quickly overwhelming. So try to balance your sensory needs with your organisation problem.
(Also, if like me you hate the feeling of moisturiser, aloe vera gel is great. It is a bit sticky, but in a different way than cream. I personally prefer that one. There's also the option of oil, there's different kinds for different skin types, even for oily skin.)
11. Japaneses know best: the bidet.
This one might sounds strange for some folx. Where I live, bidets used to be extremely common but they are disappearing. We used to have a bidet next to the toilets in our homes. Japanese toilets have a built-in bidet but they are expensive. There is a cheaper (but still not cheap) alternative. You can buy a bidet toilet seat attachment to put on your own toilets.
Why am I telling you about bidet? Because when you struggle to wash regularly, bidets are incredibly useful.
Toilet paper is highly unhygienic. Wet toilet paper is a bit better. Bidets, that spray a jet of water on your privates, clean so much better.
And they are easy and quick to use. You just press a button and you are clean.
If you have a vagina, it's even more important, because it lowers significantly the risks of getting UTI and the likes.
If you can afford it, I recommend it.
12. The hat, or "well, f*ck it"
You can fail to wash in time for whatever obligation you have. That's okay.
Just use the card "camouflage".
Greasy hair? If they are long, brush them and tie them tightly, and put on a fashionable hat. Or you favorite, silly, hat. Or just a random hat that your aunt gave you (you know the one, you wondered for three weeks if you smiled enough when you received the gift because you didn't want to offend her). Scarfs are nice too.
Other idea to hide greasy hair? A wig. They are higher maintenance, but they are good to have for occasions where you have to look a bit better or if you can't wear a hat for whatever reason.
About odors... Well you know the trick of deodorants and perfume. Not what I recommend, at least not alone. For once not everyone can stand their smell. Also, they aren't that great to succeed at masking odors. If you can, use wipes to clean your armpits (also the underbreasts if you have them) and the neck and chest area. It might not remove all the odors but it'll help and with some deodorant if you can stand it, you should be good.
About deodorant: you can use a dollop of moisturiser (yes, I know I said I hate them, but listen), it will help to stop the formation of odors but the fragrance is usually mild or absent. It's also less harsh than the usual deodorant. You only need a small amount for it to work. You just need to clean before (wipes should be enough)
13. Don't stew in your dirty clothes.
Try to change your clothes often even if you don't wash. Especially your underwears.
I know it might sound counterintuitive to wear clean clothes when your skin is dirty, but staying in old clothes is like wearing a petri dish. By keeping the same clothes on you, you also keep the bacterias that live on it and your body.
It's especially bad in some areas, like your private parts, your feet and your armpits.
If you live alone, or if you live with someone who don't care, don't put clothes on at all. You'll just stew in your bacterial crock pot otherwise.
Staying naked also has the upside of reducing the amount of laundry you have to do.
14. Use your strengths.
Sometimes it's as simple as using your other hand because your dominant one is achy.
Sometimes it's listening to a podcast about your special interest.
You're an artist? Put a whiteboard in the shower. Or, I don't know, draw your body, laminate the drawing, and color the parts you have already washed with a dry erase marker.
Your thing is to make lists of animals of Paraguay? Recite them alphabetically and make a song with them while you brush your teeth and wash your face and clip you nails.
Dancers here? Each movement you make is part of a choreography.
15. Aftercare.
Hygiene is immensely stressful and energy consuming. You don't just deserve a reward, you need aftercare.
It's okay to take a nap. It's okay to need to engage with your special interest. It's okay to need a hug. It's okay to want to be alone. It's okay to feel bad too. Have a cry. Be moody. Don't be ashamed of what you feel. Of course it's better if you manage to avoid these emotions. But it's okay if you have them.
And give yourself a little treat. Have a cup of your favorite tea. Put a shiny sticker in your "things I've done good today" diary. Cuddle with your pet. Read the Swedish dictionary.
Drink a glass of water and eat something.
Also, if you have chronic pain, like I do, take your meds. (My joints are always a bit achy after standing too long, or my shoulder are stiff after washing my hair)
Write an essay about why keeping up with your hygiene is a pain.
Do what you want and do what you need.
16. Shame has no place in the bathroom.
If you've read my previous post, you know what I mean.
I've said it in this post, it's okay to struggle, to not be perfect, or as perfect as neurotypicals and able-bodied people say we should be. Their criterias are bullcrap.
Shame won't help you to keep up to these unachievable standards. They'll just undermine you.
Also, it's okay if some of what I've said here seems unachievable also. I shared what helps me and some of my friends, but your needs might be different and that's totally okay. Maybe someone will make a post with tips that'll help more? I hope so.
Anyway, you do what you can and you congratulate yourself for it. Every step is an achievement worth of praise.
#disability tips#autism tips#neurodivergent tips#actually autism#actually autistic#actually disabled#actually mentally ill#disability#disability problems#autism#autistic adult#autism spectrum disorder#autism problems#chronic pain#chronic fatigue#mental illness#actually adhd#actually audhd#adhd tips#executive dysfunction#disabled#depression#actually bipolar#bipolar disorder#ankylosing spondylitis#sleepy bitch disease#idiopathic hypersomnia
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EVERYBODY SHUT UP AND LISTEN FOR A SECOND
Hello, hello.
To preface this post, I would like to say that I am a hard of hearing (hoh) fnaf fan. And there have been a couple things I noticed about the fnaf games, specifically Sister Location.
If you've ever made it to Night 2, you will know that there is a minigame (is it called that?) where you have to get past one of the animatronics, Ballora, in the dark.
The only way to get past her is to listen to her singing. If you can hear her singing, you have to stop so she won't find you. This raises a problem to deaf and hard of hearing people, because the room is completely black and you have to rely on your ears.
This leads to my idea, with Scott Cawthon/Clickteam Fusion adding accessibility for deaf people. I was thinking having ballora lit up, but only slightly. Maybe having her jewelry reflect some light, so then it's still hard, but not impossible for people that can't hear.
Reblogs are greatly appreciated, or maybe sending this to Scott Cawthon (if there's a way to do that.) Thank you!
#hard of hearing#deaf#disability#fnaf#fnaf sister location#ballora#scott cawthon#please reblog#please read#disability problems
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Thinking about starting a tally about how many people see me with my cane/scooter and feel like it's okay to ask me "what's wrong with you" or "what's with the stick"
Maybe I'll buy myself a chocolate or something when I hit a certain number. 50? What do y'all think?
Right now (from what I can remember, I have a terrible memory due to my Problems™) we're on 11. I started using the cane in like September ish I think. And I don't go places very often.
Maybe I'll start a separate tally for people who refuse to call it a cane or even a walking stick and just call it a stick
To be clear, I get it you're curious. But god can you not? My best friend's cousin who is 12 has more self restraint than any of the fucking adults who have asked me this. He took my best friend aside and asked why I use my scooter. I didn't even notice him doing this because he was fucking discreet.
I'm aware there are things "wrong" with me, can't you even put in the effort to have 5 minutes of regular conversation with me before asking at least? It's always the first thing out of these people's mouths after a greeting.
#disability problems#cane user#invisible disability#invisible illness#physically disabled#disabled#physical disability#disability#disabilities#chronically ill#chronic illness#chronic tiredness
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