r/AskReddit Oct 06 '22 Platinum 1 Helpful 13 Wholesome 10 Silver 6 Gold 2

Physically disabled users of Reddit, what are some less commonly talked about struggles that come with your disability?

33.7k Upvotes

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u/normaldude8825 Oct 07 '22 Wholesome

Not me, but my dad is blind. Lots of home appliances have been going from physical knobs and buttons with clear distinct functions to touch screen panels, some without even any type of sound or tactile cue to let the person know.

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u/MaybeADumbass Oct 07 '22

Touch screens also absolutely suck for those of us with hand tremors and proprioception (position sense) issues. If you miss a physical button it's no problem; just slide your finger to where it needs to be and push. If you miss on a touch screen, fuck you you're going to wherever that touch sends you.

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u/firelock_ny Oct 07 '22

I've been concerned about the rise of touch screen controls in automobiles, how much harder they make it to change a control setting by feel so you don't take your eyes off the road. I hadn't considered how touchscreens affect people with vision or fine motor control issues in things like turning on a coffee maker.

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u/Rapunzel1234 Oct 07 '22 Hugz

Bowel and bladder issues. It may not be obvious but they can be a constant issue.

Also pain that isn’t obvious.

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u/Horrorito Oct 07 '22 Hugz

Having to power through meetings you need to lead and be interactive and on camera or in-person, when you really just need to shit your guts out and are cramping so hard you're getting a sweaty forehead and want to pass out... yeah, not fun.

Or trying not to be late to work, because you don't want to be explaining you were glued to the toilet seat...

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u/Imaginary_Car3849 Oct 07 '22

My son is currently going through this. He's very worried that he might lose his job. He's up all night, and spends a lot of time in the bathroom at work. His medicine isn't helping and the gastro office wants him to stay on it for at least 6 weeks before they even have a conversation about it. By then he may be out of a job and have no insurance.

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u/[deleted] Oct 07 '22 edited 23d ago Silver Helpful Bravo! Helpful (Pro)

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u/idle_isomorph Oct 07 '22

People judging you for being a picky eater. Look, i would love to eat it. I fucking love food. But i cant spare the week of recovery my bowels would need.

For fucks sake, just not wanting to eat the food should be enough, though. Like, it isnt a moral failing to not like a food or even to be a picky eater. How do people understand consent for sex, but judge for food. Why does it matter to them?

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u/nowhere_near_Berlin Oct 07 '22

I’ve had enough bouts on the toilet in tears to keep me from ever being anything but overly cautious when it comes to food. Especially mystery communal food from coworkers.

It shouldn’t matter and just straight up tell them if they won’t stop pushing.

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u/SometimesFar Oct 07 '22

just straight up tell them if they won’t stop pushing.

Yep sometimes this is the only way. If people don't respond to a polite "no thank you", my current policy is they get one warning shot ("I'd love to, but it disagrees with my stomach"), and then if they keep pushing they get the gory version ("if I eat X, I will start violently shitting myself in about 4 hours").

If i get to the gory version I'll usually say it matter-of-factly, and juuust loud enough for 3 or 4 people nearby to hear it - I find this is pretty effective at stopping any follow-up questions or comments.

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u/final_lair Oct 07 '22

physically disabled since birth. don’t make enough to make ends meet but makes too much for disability assistance. fuck the system

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u/Conscious-Charity915 Oct 07 '22 All-Seeing Upvote

The lack of energy to do even the most mundane things. Feeling bummed out and in pain a lot.

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u/K80lovescats Oct 07 '22

Showering is so hard. I have to psych myself up to do it and plan for lots of downtime after and if I do skip a shower then I’m paranoid that I’m rank. All of which is super depressing too.

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u/Sarpanitu Oct 07 '22

I have chronic pain from being crushed in a head on with a semi. I use low impact, high intensity exercise as my go to pain management. (If my muscles are sore from working out, my chronic pain isn't always the focus) This has me in really good shape but still very much disabled. Unfortunately that makes it look like I'm a completely able bodied person that's just lazy...

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u/ALIENCLITORIS Oct 07 '22

Ah I get this! I use exercise to cope with chronic pain too. So I’m relatively fit. But moving my body in certain ways still just doesn’t work. When I exercise I can do my own routines so it won’t hurt me worse. But sometimes I get invited to activities that I just can’t or really shouldn’t do. Or being expected to do certain tasks at work. I have nerve damage from falling out of a tree, mostly in my left leg.

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u/passthemarinaras Oct 07 '22

Urinary incontinence and the cost associated with it. A vast people with my condition struggle with incontinence, but we don’t talk about it! I’ve had incontinence since I was 12 years old. I was so embarrassed that I didn’t tell anyone for years. I had to buy diapers behind my parents back. I also always smelled really bad. The diapers would leak or the pads I used would fall off, so I would just leak urine all the time. It was so embarrassing. I would have to change my pants multiple times a day to not smell.

Well, I consulted a doctor and there’s nothing they can do for me. I’m 22 now and have lost almost complete control of my bladder. People don’t understand that leaks are inevitable and happen occasionally. I get absolutely roasted for having leaks. My friends still make comments to me when I buy diapers and thick urinary pads, despite knowing my condition. People only accept disability until it’s embarrassing.

Not to mention the cost. Im a broke 22 year old college student living on my own in LA. 10 diapers from the only brand that won’t leak are $28. Think about how many times you use the bathroom a day…. Yeah. That’s just ONE cost of my disability. There’s so many more.

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u/JadeGrapes Oct 07 '22

Maybe you are already aware of these options, but besides diapers/pads there are also some other options;

Urethral insert, it basically works like a little tube shaped plug, with a small balloon that helps hold it in place inside the urethra.

Also, there is a surgery option where they implant a new urinary sphincter that is controlled by an implant that lets you switch it open/closed.

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u/Gag180 Oct 07 '22 Silver Helpful Wholesome Hugz All-Seeing Upvote Starry

Just the exhaustion from having to deal with your limitations, both physically and mentally.

Doing anything always takes extra effort, and usually requires more resting to feel up to doing whatever else needs to be done.

As a disabled person who works, I usually only have enough energy to make dinner when I get home. So chores tend to pile up, and some jobs just never get done because it requires more energy than I have in one day, unless I get someone else to do it for me.

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u/Unbreakable_S Oct 07 '22

Oh, I get this completely. And you can't just "fight your way through" fatigue. It's like the car is OUT OF GAS. A pep talk isn't fuel, it's just annoying. I work, too, and my medication has helped so much, but I still struggle big time with laundry, cooking, cleaning....The cat has to be fed, watered, etc. He has stuck with me through this so he gets priority.

Do you use any of the services like Grubhub, or grocery delivery apps?

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u/buggiesmile Oct 07 '22

Hell even if you manage to find “reserve gas” to use you’ll have half a tank at best to start with the next day if you use it.

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u/wifeoflegend Oct 07 '22

Absolutely! I hate having to push through something due to circumstances I have no control over and then have to spend 2 days recovering....always behind somehow. The constant drain and feeling incapable takes an emotional toll on top of the mental and physical drains too.

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u/SexySciuridae Oct 07 '22

Yeah this so much. I always feel like every action needs to be considered and planned because the cost is higher. A trip to the store? Work? Yeah that means an empty battery so no energy left for anything else.

But it's down to smaller details too. Like, do I get up and fetch tea from the kitchen? Or can I put on that nice dress for once or is it too much to raise my arms up high to get in it? Can I still go and play with my kid on the floor later? Every single action needs to be considered and it's so exhausting.

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u/XanderJayNix Oct 07 '22

I use a cane, and sometimes my fiancee forget I only have one hand available when standing.

Also the amount of energy required to do the same activities.

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u/coolcookie27 Oct 07 '22

This!!! I'm a new cane user and the amount of times my mom leaves me to carry more than one thing is shocking. Also first time out I didn't get a basket that was a mistake I only made once.

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u/XanderJayNix Oct 07 '22

Pro tip, pull the shopping cart next to you with your free hand when space allows. Easier than trying to coordinate the cane every time you stop and go to grab items, then trying to put the cane in the cart and steer with both hands.

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u/k-NE Oct 07 '22

I absolutely destroyed my right knee in the military. I was 22 years old, right knee cage looking brace. I walked with a cane to help support myself.

I started using the powered carts at Walmart and such, and got some really nasty comments about how lazy I was... While my cane was between my legs, and my caged knee was completely visible.

I couldn't believe it at first, then I stopped caring and just rode the carts until I didn't need to anymore.

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u/karigan_g Oct 07 '22

every time I see one of those mental illness campaigns that are all like ‘you wouldn’t tell someone with an injured leg not to use a wheelchair’ I get so pissed, because people can and will be the biggest arseholes over the tiniest thing and are regularly complete cunts to visibly disabled people, let alone those of us with invisible shit going on

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u/MissMurderpants Oct 07 '22 Bravo!

I love how target has holders for crutches on the back of their powered scooters.

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u/Zauqui Oct 07 '22

People can and will be ignorant asholess. Hope you are doing well.

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u/4ninawells Oct 07 '22 Silver All-Seeing Upvote Helpful (Pro)

The fact that it's hard to keep friends because you have to cancel last minute so often. It's not that I don't want to go - I so want to go! But my body said no. Only the best of friends stick around after years of this.

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u/LeaveForNoRaisin Oct 07 '22

I’m the disabled ones and none of my friends will travel for me but I travel for them all the time. They all ended up buying super inaccessible homes (I don’t blame them for that) so I’m finally drawing the line. They can come to me at least as many times as I go to them.

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u/dumbest_thotticus Oct 07 '22 Silver Helpful Hugz All-Seeing Upvote Starry

Not (always) being able to tell when an illness or injury is bad enough to need medical attention. When "nauseous, fatigued, and in a noticeable amount of pain" is just your constant state of being, it's not easy to know when something worse might be going on or if you're just having a bad flare-up.

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u/tracer2211 Oct 07 '22

So true.

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u/RhinoRationalization Oct 07 '22

Twice I was in the ER for something else when I was asked, "Do you know that you have a kidney infection?"

No, ma'am, I did not.

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u/bopeepsheep Oct 07 '22

My GP teased me (nicely) about not being able to distinguish "low back pain" from "low back pain". My spinal damage doesn't usually cause a fever, to be fair.

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u/RhinoRationalization Oct 07 '22

Yup.
Both times I thought, "Well that explains the fever."

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u/Past_Restaurant_2169 Oct 07 '22

cries in chronic illness causing random fevers

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u/dobiewan_nz Oct 07 '22

Such a vibe. Abdominal pain is just part of my life, and I'm scared that one day there'll be something else wrong and I won't realise. I just hope I'm so familiar with my colitis pain that I'd notice if the pain was slightly different.

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u/discostud1515 Oct 07 '22 Silver Gold Helpful Wholesome All-Seeing Upvote Coin Gift Take My Energy Wholesome Seal of Approval Table Slap I'm Deceased

Farts are wheelchair height.

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u/iiiimagery Oct 07 '22 Helpful

This absolutely killed me

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u/brjung21 Oct 07 '22

OMG THiS!! Lol. Constant onslaught of butts and not all of them are nice. But some are

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u/cheesyrack Oct 07 '22

“But some are” 😂

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u/Admiral-Isopod Oct 07 '22 Giggle

I will be keeping this in mind the next time I crop dust someone in a store. 🙏

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u/IGPerrish Oct 07 '22

People get mad when I'm standing in the disabled line. Yes, I've fucking noticed I'm in the disabled line, thanks for reminding me of that

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u/TheDarkestCrown Oct 07 '22

As a wheelchair/prosthetic leg user, when people do that I just raise my pant leg and make a loud enough comment so everyone in earshot knows they're being a rude cunt. Fuck off, not every disability is visible. Public shaming is sometimes the right response to this bullshit.

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u/Yellowmellowbelly Oct 07 '22 edited Oct 07 '22

Fuck off, not every disability is visible.

My ex broke both of his feet once and was in a wheelchair for a few months, followed by a year of rehab and he still has pain and a hard time keeping his balance standing up. This means he needs to sit down at the bus. A seemingly healthy fit guy in his twenties. The amount of comments and dirty looks he gets as soon as someone elderly, pregnant or visibly disabled gets on is alarming.

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u/Interesting-Gear-819 Oct 07 '22

make a loud enough comment

Can I ask what? Something along "Want to touch it, to ensure it's really not a real leg?" or more straightforwarded and simply calling them out without any questions etc. ?

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u/TheDarkestCrown Oct 07 '22

I haven't had many experiences with this since 99% of people (in my experience so far) are cool about it. However, one time I straight up said something along the lines of "am I not disabled enough?" in response to whatever the other guy said, I don't remember though because it was years ago. A few people gave him a death glare and I felt pretty okay with that since he left me alone after.

Typically anything that both shows your actually disabled while pointing out the other person's rude remarks is sufficient thankfully. I haven't had it go into any kind of debate/argument thankfully.

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u/jukitheasian Oct 07 '22

I think an "Oh my god, my leg grew back?!" would throw people off

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u/TheDarkestCrown Oct 07 '22

Oh I’ve actually had to use this once in a government setting, when the government gave me a 3 year review date to see if I’m still disabled. Someone on my medical file, one of my specialists, said in a more roundabout way that I’m not going to grow my feet back and the person who suggested I get re-reviewed is a fucking moron lol. The next review was stamped as “disabled indefinitely” with no more reviews 😂🙃

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u/just_a_person_maybe Oct 07 '22

I wish they could do this for my prescriptions so I don't have to go in to a doctor every once in a while to keep getting them. My condition is incurable with current technology. I've been taking this medication for fifteen years and will continue to take it until I die, why do I need to prove I still have this chronic, incurable condition???

I almost ran out once because they didn't tell me I was out of refills and the doctor wouldn't write me a new one unless I saw them in person until I tried to call in a refill. I had two week's worth left and they're telling me I need to somehow make an appointment for right now at my clinic that is telling me they have no room for six months, or I won't be able to refill. This is medication that going without means imminent death.

I was on the phone with people all week fixing that one. Finally convinced my Dr. to just refill it, which they did on the condition that I also made an appointment for as soon as possible.

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u/yukichigai Oct 07 '22

Several years ago I injured my back (herniated discs) and for a few years after I simply could not stand for any length of time and needed to take frequent breaks to sit. Outwardly though I looked just fine, and I got all kinds of weird looks when I'd use disabled seating, stand in the disabled line, so on. So I got a cane. The cane did not physically help me at all (and might even have made my back worse if I put real weight on it) but as long as I looked like I was using it the questions and weird looks stopped. Relatively simple solution in the end, but I was always just a bit annoyed that I had to use a prop so people would stop judging me.

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u/crazypurple621 Oct 07 '22

I am disabled and a part time forearm crutch user. I have been accused for doing this to get attention because I'm young and I don't "look" disabled.

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u/fatsausigeboi Oct 07 '22 Silver

"Well, you didn't look like an asshole until you spoke."

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u/Jasminefirefly Oct 07 '22

Ooo, I love this. I'll have to remember this one. I've been really lucky so far and haven't been harassed about parking in disabled spots with my hidden disabilities, but I'm always on guard; I've heard so many horror stories.

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u/GodOfStrife Oct 07 '22 edited Oct 07 '22

Nice to see another forearm crutch user. I have 0 visible symptoms that would make it apparent that I have a disability so the constant "what happened to you?" questions, followed by the looks confusion and incredibly personal questions after I say that I'm disabled. Also justifying having to sit down in places where I'm expected to stand because "clearly it's not that bad".
Edit: forgot a word

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u/crazypurple621 Oct 07 '22

Mine is only visible if you know what you are looking for or if I'm using my crutch. You can tell that I walk funny on stairs and I'm slower than molasses, especially on really bad days, but it's only really noticeable if you are a person who can tell that my gait is slightly off most of the time. I don't so much mind the "what happened to you" question, but I do mind the implications that some people make that I'm lying.

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u/[deleted] Oct 07 '22

[deleted]

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u/OneGhastlyGhoul Oct 07 '22

Holy shit, that hurts! I'm so sorry for you! I really wish people would ask more and assume less. If I had been you in that plane situation, I probably would've ripped my pants away at some point. "Look, here's the disability you obviously want to see! Now leave me the fuck alone, you psychos!"

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u/[deleted] Oct 07 '22

I hate when people do that, it’s almost as bad as the “well you don’t LOOK disabled” people.

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u/Coffee_autistic Oct 07 '22

"well you don't look like a doctor"

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u/crazypurple621 Oct 07 '22

IME the "well you don't look disabled" is something someone says to try to defend another shitty ableist thing they've said.

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u/Cantthinkofnamedamn Oct 07 '22

It's not enough that you have a disability, they also expect you to act like their ignorant stereotype of the disability.

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u/fappyday Oct 07 '22

I've seen a few videos of this bullshit and it makes my blood boil like nothing else. I have a mental condition, so there's nothing to see and people just don't understand at all. I wish that people could step into the lives of others for just one day.

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u/lulafairy24 Oct 07 '22

I have a heart condition that can be troublesome and a couple other issues that exacerbate it or are annoying on their own. I look fit and healthy, I teach fitness. people look at me weirdly if I use my handicapped tag or if I need disability services at an event. Sometimes I just exhaust myself so I don’t have to deal with dirty looks or words.

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u/moonlitskyy Oct 07 '22 edited Oct 07 '22

ramps can be weirdly steep, doorways suck- heavy ones are the worst, and people get very angry if they think you're pretending to be disabled because you are young (or are an ambulatory wheelchair user because only paralyzed people use them /s)

personally my biggest struggle that I've been working on for years is not feeling like I'm useless and a burden to everyone I love. I've come a long way but I'm definitely not where I want to be yet mentally

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u/Leftstrat Oct 07 '22

Menus up way behind the cash registers. I've always wondered if it gave people with normal sight problems.

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u/SailorVenus23 Oct 07 '22

I hate when they do that! It's so hard to read fine details.

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u/Alcohol_Intolerant Oct 07 '22

If it helps you feel better (?), I have normal/corrected sight and those stupid menus are still hard to read. Many times I've just googled the menu or used my phone to zoom in. It's flat out terrible design.

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u/closetmangafan Oct 07 '22

Sometimes it's just a simple thing like the brightness of the light behind the menu is actually too bright.

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u/Just_Curious_130 Oct 07 '22

The social aspect. So many people get mad, like I’m not disabled enough to be using whatever help I need. But it takes me so much longer to recover from overexertion. Kind of makes me want to deposit people in the middle of the Pacific Ocean. Just because they technically could tread water for three days doesn’t mean they should have to or that they would be in any condition to go to work the next day.

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u/SJammie Oct 07 '22

Accessibility gets talked about but what gets me? Shitty accessibility. I live in Adelaide, we have a "stylised" gutter system in the shopping CBD that 's meant to mimic a river or some shit and it sways and curves around.
Meaning all the fucking inner CBD shopping lane is uneven and slopes to the gutter that wavers around. Combined with polished stone that gets slippery when wet, it's a nightmare to try and control a wheelchair of any type.

Also: steep ramps. Fucking hell, I am not that buff and strong, my shoulders dislocate under force. Your thirty degree ramp is fucking terrifying.

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u/crazypurple621 Oct 07 '22

Those ramps are also horrific for anyone who uses a walker/cane/crutches too. Especially if they are sloped in multiple directions or if the pavement is not well maintained. Nearly every time I have experienced a fall in public it has been because of a poorly designed and not maintained ramp.

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u/ImpossiblePackage Oct 07 '22

shit dude, they suck for people that don't have mobility issues. I'd rather climb stairs than a ramp that's too steep. It's super obvious when they put in a ramp only because they're required to

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u/LittleLunarLight Oct 07 '22 Take My Energy

The heinous need to be near a bathroom at all times. You wouldn't think, but so many places don't have bathrooms and it really limits where you can go and how you socialize. It's very limiting.

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u/ANJohnson83 Oct 07 '22 edited Oct 07 '22 Silver Gold Helpful Starry Masterpiece

If you have an illness that requires immediate access to a bathroom (Crohn’s disease, ulcerative colitis, interstitial cystitis, ect.) and live in Colorado, Connecticut, Illinois, Kentucky, Maryland, Massachusetts, Michigan, Minnesota, New York, Ohio, Oregon, Tennessee, Texas, Wisconsin, and Washington, the bathroom access act exists. With proof (some urologists and gastroenterologists have a special form for this), it allows people to use employee restrooms. I have also used it as proof when using a restroom of a business I am not a customer of.

One thing I forgot to add: two employees must be in the business, for the safety of the employees. According to u/thih92, the number of employees vary by state, some say 3 must be present.

https://en.m.wikipedia.org/wiki/Restroom_Access_Act

I use it about once a year and every time I am thankful it exists.

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u/Kai-ni Oct 07 '22

Yea. I have a card to give people to quickly explain this. The issue is convincing an employee the law exists takes time you may not have before shitting yourself, so that's fun.

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u/Hugs_for_Thugs Oct 07 '22 Silver

"Listen, this is going to go one of two ways. One way involves you and a mop. Your call."

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u/Mrsparklee Oct 07 '22 Helpful Giggle

"Look man, I know this is shitty but if you don't hurry it's gonna get a lot shittier."

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u/Charming_Love2522 Oct 07 '22 Silver Helpful All-Seeing Upvote

I work at a gas station and our public bathrooms been closed since I started there a little over a year ago.

If it's an elder, a child, or someone I can tell really needs to go, I let them. We're not supposed to because you have to go past a lot of our backstock of merchandise and of course, don't want any theft to occur.

I had a guy come in and ask, I said unfortunately, we don't have a public restroom. He said "bro I got IBS." I immediately said "all the way back, to the left." He ran back there so quick. I ain't gonna let anyone shit themselves. Write me up over it, I don't care.

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u/Baron_von_chknpants Oct 07 '22

Had to do this yesterday.

Had cancer and part of my colon removed, so when I gotta go, I GOTTA GO.

Customer toilets were blocked so I asked a customer service person who asked the manager who escorted me to the employee toilets. I was so thankful

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u/thisisallme Oct 07 '22

While I didn’t have cancer, my colon and some intestines removed. I’m right there with you. I have to have meetings on camera all the time and I have one supervisor that still hates it when I have to leave and ask someone else run the meeting. I don’t get it.

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u/tanntanatann Oct 07 '22

Carry your laptop to the toilet with you on your next meeting with your supervisor. Keep video and audio on for their benefit.

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u/Trick-Seat4901 Oct 07 '22

Man I wish this was a thing in Canada. I used to know every bathroom for every place I ever frequented. I'm not disabled, and I'm not trying to take away from the post. But fox Creek do a lot of employees feel like you're going to rob the store when you just want to try and not shit your pants.

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u/Kai-ni Oct 07 '22

This one. My entire life is planned around 'is there a bathroom present' and people don't really consider how limiting that is. I can't go camping, movies stress me out because I have to sit there for the full run or disturb everybody by getting up to go, driving long distances is a stressful experience - where's the nearest bathroom off the highway if you gotta? Some random gas station? stressful stressful will I make it in time? better to just stay home. Where there's an easily accessible bathroom at all times.

Can't go to concerts or games where there might be a line to the restroom. Can't wait that long. Theme parks, same issue on busy days.

So.. what am I doing with my life?

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u/Mumofalltrades63 Oct 07 '22 Helpful Wholesome

I know that Ontario Provincial Parks have accessible bathrooms & showers. So good if you’d like to camp in Ontario. Many beautiful campgrounds too. Disabled residents of Ontario pay 1/2 price camping fees. Here is a list of the most accessible Ontario Provincial parks, with descriptions of accessibility, such as hard packed trails. Ontario Accessible Parks

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u/HellsKettleBell Oct 07 '22

Brachial plexus palsy from birth. There's so many things that you would never even think of would be difficult to do, until you have to reach with both arms. Changing light bulbs in ceiling lights, hanging curtains, screwing things into walls, putting things on or getting things on a high shelf. I'm a fairly tall person but I end up standing on chairs a lot. The problem is even with standing on a chair say, to put a screw in the wall to hang a picture, my paralyzed arm will only reach out about a half inch from my body.

Putting on a coat can be weirdly difficult, I usually just stuff my one arm in it and then swing the coat around to get my other one in.

Also, coats and jackets and long sleeve shirts always look a little odd because one sleeve is always cuffed up. That's more vanity than anything but it's just something that I have to do most days.

I'm grateful that even though I have a disability I've had it since birth. There were many times in my life when I wished I had two working arms, and that I could be like everyone else. I used to dream that one day I would wake up and my arm would just work. That's never going to happen. However, this is the only way I've ever known how to live. So I guess it could be worse. I don't mind it now, I can joke about it. It's part of who I am.

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u/worcesternellie Oct 07 '22

I had a coworker with Erb's palsy that was really into hair and makeup. She could do some astoundingly complicated hairstyles essentially one handed. She joked a lot that she was so good at makeup and art because she got to put all of her energy into learning to use one hand versus two.

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u/nerdzilla314 Oct 07 '22 All-Seeing Upvote Bravo!

Unsolicited advice. I literally spend all of my time working on managing my illness, I don't need you telling me to see your magic crystal infrared naturopath because a) it won't work, b) I don't have the energy anyway, c) I'm spending all my time, money and energy on pursuing scientific interventions. I realise people think they're helping, but the best help is listening.

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u/Orkmops Oct 07 '22

The amount of times people tell me I just need to take vitamins when they learn I have a dysfunctional immune system...

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u/thatjustwhatyouthink Oct 07 '22

I have an autoimmune disorder, and so many people will recommend some woo woo treatment or naturopathic doctor to “improve my immune system”

If my immune system doesn’t need improving. It’s already so good at what it does it almost killed me.

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u/ILookAtHeartsAllDay Oct 07 '22

Someone recently told me they had miracle treatment for my MS (more diet cure bullshit), I gave them the direct number to my neurologist and asked if the wanted to tell to Dr I about it, told them to call right then and there because he obviously needs to know about this medical breakthrough. Turns out they didn’t think it important enough to bring to the attention of my award winning MS Specialist. I kept my treatment plan the same.

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u/fuckaboutshitosage Oct 07 '22

How drained you feel when there's a flare up. My intestines were giving me trouble this morning, and I had to take a nap when it was over because bracing against the pain expends a lot of energy.

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u/Queseraseras Oct 07 '22

Yeah, if my pain is bad enough I get adrenaline flowing, and then the inevitable adrenaline dump and just sheer exhaustion from high levels of pain.

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u/glittermouton Oct 07 '22

I’ve had ulcerative colitis for 15 years and when it was flaring badly it was absolutely debilitating. The energy loss from bracing for the pain and being in the bathroom so many times… I’d just have to nap.

I remember the dr telling me once that the pain level was similar to childbirth. Explaining to people that it felt like I was in labour, all day, for weeks…. They still didn’t get it cause I “looked fine”.

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u/Burly_Bara_Bottoms Oct 07 '22 Wholesome

That it's functionally illegal to get married. If you're disabled and live on disability, marriage voids your benefits.

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u/purple-vixen Oct 07 '22

In my country, there is the same problem with cohabiting.

I trust my partner, but I have ended up in poor situations previously because I have trusted the wrong people. Is it any surprise that disabled people are at a higher risk of spousal abuse, if the state ensures that we don't have any independent income, and therefore will find it harder to leave if things go bad?

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u/[deleted] Oct 07 '22 edited Oct 07 '22

Most of us tend to hate when people try to get offended on our behalf, we aren’t children.

Also with my disability I’ve been accused of having monkeypox, I have NF-1 and have tumors on my face that some people mistake for monkeypox.

That scenario recently happened to a girl on a train in nyc and a doctor in Spain made a false story about a guy who had it but it was really tumors on his legs.

People are assholes

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u/Galastique Oct 07 '22

You're talking about neurofibromatosis right? I have it too. Does it ever affect your life in other ways? I'm kinda curious considering I've never really met someone else that has it.

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u/feochampas Oct 07 '22 edited Oct 07 '22 All-Seeing Upvote

I dont look disabled so I get judged as lazy all the time.

every minute of every day is simply pain. it hurts to move. it hurts to not move. it just always hurts.

Edit: Thank you all for your words of encouragement.

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u/lady_farter Oct 07 '22

Ugh, I completely feel your pain…literally every second of the day. I have neurological issues that sometimes affect my movements and strength. It also causes pain that never goes away. I’ve been accused of being lazy or too young and healthy to have a disability. If they could just live one day with the pain we chronically feel, they would understand.

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u/buckyhermit Oct 07 '22 edited Oct 07 '22

The number of random people who will grab or lean on my wheelchair without permission (when I’m in it) would shock you.

—-

Edit: The replies from non-disabled folks who found this surprising (and disabled folks going like “yeah that happens a lot”) really tells the story. Society needs to do better.

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u/wjkingaby Oct 07 '22

I've seen people in public just push someone in a wheelchair out of their way, without asking, as if they were moving an inanimate object.

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u/evilocto Oct 07 '22

People have tried that with my mum but she uses an electric wheelchair which weighs over 200ibs so you can imagine how that went for them.

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u/Celestial_Light_ Oct 07 '22

This! Back when I was younger and had a wheelchair, I had someone try and flip me out of it because they insisted I couldn't actually be disabled due to my young age. I was in my early teens back then.

Even though I don't have it now, I still have my physical invisible disabilities (and recently got diagnosed with another this year) and still get abuse. Same sort of thing "you're to young to be disabled". Smh

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u/IDrinkObamasSpit Oct 07 '22

I still avoid using scooters at stores because of this. I used it ONCE and a 40 something year old woman spent 20 minutes berating me until I cried. It was awful. I just walk around exhausted and in pain bc of it.

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u/uhujkill Oct 07 '22

Nah, my friend.

You don't need to justify anything to a stranger, especially when you're not bothering them in any way that affects their day to day activities.

If you do change your mind, it'll make a lot of us happier knowing that you have reclaimed a small freedom, that was yours all along.

No to pain.

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u/hayb24 Oct 07 '22

Fuck those people, ride any damn scooter you please and take care of yourself/health.

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u/Matasa89 Oct 07 '22

Wow, imagine being that close-minded. It's almost like they can't imagine life being different for other people...

I mean, was there no disabled kids in their classes? I had a freaking classmate and new friend die on me... RIP Thompson, I wish you had a better lot in life.

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u/Flodartt Oct 07 '22

I never had a disabled, at least visibly disabled kid in my class, nor my high-school actually (it was a really small high-school). Still, I'm pretty sure I never doubt the fact a kid could be disable and need a wheelchair.

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u/Pingy_Junk Oct 07 '22

I once had my teacher take and twirl around my cane without permission in the middle of class. People need to keep their damn hands to themselves

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u/wafflehousewhore Oct 07 '22

When I was a freshman, I messed up my leg and was on crutches for a bit. One day, we had a substitute that couldn't control the class, and a few of the kids took my crutches and ran off with them. The sub got mad at me and told me to stop them from doing that. I snapped back "What do you want me to do, chase after them?"

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u/Wookiees_n_cream Oct 07 '22

I had almost the same scenario happen to me. Kids were always stealing my crutches during class and a teacher threatened to take them away. Excuse me? I literally need those and it's not like I can stop them with a messed up leg.

*edited to add they were stealing them to play with because crutches are "fun" when you don't actually have to use them.

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u/joreadfluidart Oct 07 '22

My ex boyfriend once took my cane without permission (left me sat on a bench unable to get up) so he could use it as pretend golf club. Forgetting that it's a fold up one. As he swung the cane it all unfolded and smacked him in the head. It was pure karma. We were at a bbq with about 30 people. I still laugh about it today.

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u/DooDooTyphoon Oct 07 '22

Working on cruise ships, the first thing they taught us was Ask before touching somebody's wheelchair, even if they look like they're struggling. Nobody appreciates being grabbed out of nowhere, even if the intent is to be helpful

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u/AutoLang Oct 07 '22

And unexpected pushing can hurt someone! You’re holding onto your wheels and someone suddenly pushes you? Your finger could get caught and roll forward. Thanks for injuring the upper limbs I rely on every day

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u/aguycalledkyle Oct 07 '22

One of my best friends uses a wheelchair, and a few years ago at a concert had some random dude sit on her like she's a chair at the venue. I still can't make sense of that one.

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u/zippyphoenix Oct 07 '22

I had a stranger wheel me in the wrong direction in a stadium and try to lecture me because I was new to being in public places in a wheelchair and wanted to try independently opening a bathroom door. She said I made her look bad to her date. I’m thinking I did him a service.

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u/andr813c Oct 07 '22

How the fuck does you opening a door have to do with making her look bad? Wut?

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u/zippyphoenix Oct 07 '22

Yeah, I didn’t get it either. If I truly couldn’t get it open to get out (it was heavy) I would have just waited for someone else. It was a bowl game with lots of people.

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u/d-a-v-e- Oct 07 '22

I’m guessing she wanted to impress her date by showing how helpful she is. And then Zippyphoenix had the audacity to want to go in another direction and open the door themselves, and to tell her that in front of her date.

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u/happylittlelurker Oct 07 '22

What in the ever loving fuck

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u/Hargelbargel Oct 07 '22

Strangers?

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u/buckyhermit Oct 07 '22

Yes. Absolute strangers. Often on the bus.

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u/RedRockPetrichor Oct 07 '22

Ugh. I hate everything about that.

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u/CuntyReplies Oct 07 '22

I heard on the radio about a woman who had just returned to work after maternity leave. She was a flight attendant and had helped push a passenger in a wheelchair to their gate and they were both waiting to board.

Someone stops to ask her something and, instinctually, she begins to rock the wheelchair back and forth gently like she’s holding a pram with her baby in, not a full grown adult waiting to board the plane.

Apparently the poor flight attendant was mortified when she realised what she was doing. I think the passenger thought it was a bit funny.

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u/No-Accident8183 Oct 07 '22

I had a flight attendant take my walker from me. Like, out of my hands. And walk it back to an area about 15 feet away right before boarding a plane. I could not walk without it and asked how I was supposed to finish walking the 10 or more feet to board and the rest of the way to me seat. She told me to go back the 15 feet where she had took it and get it. Myself. Again, I couldn't walk without it. I asked her if she was slow or just stupid. Luckily, there was a pilot two people behind me who saw and heard everything. He was NOT happy with her. He went and got the walker, unfolded it and gave it to me. All the while, the look on his face and the look on hers when she saw his look was priceless. IF she wasn't fired, I would bet money that she wished she had been.

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u/Select_Lime3079 Oct 07 '22 edited Oct 07 '22

Ug it's like they see it and see a sign that says please touch. I do not for the life of me understand why they think it's okay

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u/buckyhermit Oct 07 '22

Oh man. That reminds me of something else. If I leave my chair, such as in a dressing room when I need to be on a bench, there's always a possibility someone will grab my chair to use, thinking it's a "communal" wheelchair or something. As if society has wheelchairs just hanging around for people to take whenever they need/want one.

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u/Bobbinapplestoo Oct 07 '22 edited Oct 07 '22

I went to the ER when i was unable to walk due to an acute disc herniation and the nurse took the chair away from me while i was on the bed in the exam room (which i got on to by pulling myself up with my arms) and when i was told i could leave the nurse left the room and then came back 15 minutes later and said "You can leave whenever you want to!"

I said, "Yes, i would like to, but i can't walk".

That was a really shitty day.

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u/Select_Lime3079 Oct 07 '22

The heck?! Please tell me you talk to a patient advocate or at least called management about that. I'd be livid

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u/BleakBluejay Oct 07 '22

YEAH. I've had motherfuckers at music shows try to use it as leverage to climb on stage. Makes me so fucking furious.

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u/hunnyb33_ Oct 07 '22

bruh a wheelchair is an extension of yourself, and your personal space. that’s so disrespectful

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u/dogsonclouds Oct 07 '22

It’s the equivalent of literally picking a stranger up and moving them out of your way, and yet an alarming number of people don’t seem to get that.

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u/Eric_EarlOfHalibut Oct 07 '22

Heard of a lady who put sharpish spikes on her handles.....problem solved.

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u/buckyhermit Oct 07 '22

Not sure if that solves the problem. My chair has no handles at all, and that doesn't seem to stop people.

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u/Broosevelt Oct 07 '22

Put some break-away handles on it for a fun surprise! Bonus - "Hey you broke my shit!" - Action

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u/EvokeWonder Oct 07 '22 edited Oct 07 '22 Silver Take My Energy Take My Power Timeless Beauty

I am deaf so I don’t get excited much about going anywhere: church, movies, plays, and concerts. If there wasn’t any interpreters I didn’t enjoy as much but would still go because I wanted to be with family having fun. Then I feel guilty because it would be my mama interpreting or my sibling and I knew if they interpret they don’t enjoy it as much because interpreting makes them forget what they heard.

I found out that movies do have subtitles, you just had to find which movies lace offers that option and it has to be on certain days and usually during the daytime when it was more common for everyone to go at night together.

I hate it when I’m perfectly capable of crossing the streets and people would literally grab me and yank me back. Makes me mad when they think they are helping me but if they hadn’t grabbed me I would have been already at other side of the street before the vehicle even made it across.

People don’t realize how much deaf people hate being touched because we are constantly having to respond to people who tap their shoulders or grabbing them to force them to look at you for attention.

I use to work at camp as a counselor for the deaf and other counselors were hearing and would grab kids like that and the kids would try to run away. I would advise them to learn how to simply wave for their attention. One had the nerve to tell me off because one kid refused to listen to her so she body blocked the kid. I said the kid probably doesn’t respect you because you didn’t respect their body space. She was angry at me for suggesting that.

Also, being deaf I have noticed people tend to think I am stupid. It doesn’t bother me so much now because it simply means I don’t have to talk to them, but it pisses my family off when people assume I’m stupid. I have to explain that it’s no use explaining to these people who think I am stupid that I am not. Their opinion is already made up.

I met a guy who kept going on and on how I don’t look deaf because I am too pretty to be deaf. His wife was pissed at him and had to tell him to shut up because that’s rude. I shrugged it off because I don’t care. I get it all the time that people comment constantly how I don’t look deaf. Then on top of that they’d say “Thank God she’s pretty.” Like being pretty is a good read to make up for being deaf?

I guess the older I get the less I care about what people say about my deafness. You sort of grow thick skin about it, but it use to bother me so much when I was younger because I never know what to say because I’m an introvert and don’t like dealing with rude people.

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u/I_Like_Turtles_Too Oct 07 '22

Also, being deaf I have noticed people tend to think I am stupid.

UGH I get this all the time. People will think I'm dense or oblivious when I don't realize they're talking to me. I'm not stupid, I'm hearing impaired, you fucking dildo.

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u/MikeyHatesLife Oct 07 '22

I don’t get it too often anymore. I’ve been at my current job for seven and a half years, so I know most of my clients. They know me & my work ethic, so it’s been quite a long time since I’ve seen the eye roll + “this guy is developmentally disabled” facial expression when I begin speaking. I kind of preferred that to the “awwww… they hired a mentally disabled person” pity face.

Fuck those people.

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u/banjonyc Oct 07 '22

I saw of all places here on Reddit that a lot of movie theaters have this device that you can put right on the seat in front of you that will have subtitles for any movie at any time. To theaters really have those or they just super limited?

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u/EvokeWonder Oct 07 '22

I used these three times and subtitles didn’t show up first time and they gave me free tickets to same movie. I ended up giving them to my mama, second time people were already in seats that I was told was best for the device, so I had to read the subtitles tilted, which gave me an headache, third worked because their subtitle machine actually worked and I was in correct seat for it. I found it easier to just wait for it to be released on DVD or to streaming.

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u/vebb Oct 07 '22

As another deaf person, I believe my local cinemas offers something like this device that you put in the cup holder...

I have never tried it because, I need the subtitles on the screen, if I'm watching the subtitle device, I'm not watching the movie heh.

I'm just waiting for someone to realise they can use the Real 3D glasses and have subtitles invisible to everyone not wearing the glasses. Would be so good.

Right now, if I do see a movie in a cinema, I do have fun. Then I get to experience it again but better when it comes out because it'll have subtitles.

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u/banjonyc Oct 07 '22

You know what's interesting is a recently read an article that people streaming at home or now using subtitles whether they are hard of hearing or not. Included in this category. My hearing is fine but I find it much more enjoyable with subtitles as I think a lot of these actors Mumble so much these days it's just more satisfying to have the dialogue on the bottom of the screen

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u/blackbird522 Oct 07 '22

I have high frequency hearing loss and tinnitus and just “gave in” to using subtitles within the last couple of years. It’s changed everything. I couldnt hear whispering or low talking and I’ve always had issues distinguishing a thick accent. Now my husband is so happy bc I don’t immediately check out of a low sound movie. He loves the meme of the chick from Scooby Doo that says “my subtitles! I can’t hear without my subtitles”. But it’s true!

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u/Wasteful-void Oct 07 '22 Hugz

How isolating and lonely it can make you

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u/Due-Outcome8053 Oct 07 '22

The fact that I will literally have absent/aura seizures without any warning while standing up, and being told "power through the anxiety"... meanwhile my heart rate is 137 and I literally cannot hear anything going on around me.

I also have bilateral sciatica and at least one slipped disk, and I'm tired of people telling me "you're able to stand so you're fine"

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u/EstelSnape Oct 07 '22

I have mild cerebral palsy but look pretty normal. I do limp when walking. There were times in college when rushing to class that people assumed I hurt myself (twisted ankle...) The big struggle was getting them to understand its not an injury when they insisted on helping.

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u/EspressoBooksCats Oct 06 '22

Even with the ADA, there are still places that aren't wheelchair accessible, so you kind of get into the habit of calling ahead and asking or looking online.

A depressingly large amount of holiday attractions aren't:t accessible, for example.

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u/Anonmyo0 Oct 07 '22

Or when they put a "wheelchair accessible" ramp in assume all wheelchairs are 4 wheel drive or something, you go tipping backwards cuz its so steep.

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u/Ferocious_Kittyrose Oct 07 '22

I work for a wheelchair accessible zipline, and it’s sad how many customers will come talk about how many vacation activities are non accessible. I hadn’t even considered that beaches would be non accessible until I had customers tell me.

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u/Squeaky-Fox43 Oct 07 '22

Bethany Beach, DE has beach wheelchairs to borrow and accessible ramps to the sand.

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u/smm523 Oct 07 '22

Due to a severe hand injury, I can’t write. You need to write everywhere! Receipts, doctor’s office, checks, labeling….it sucks. I also can’t shake hands and it puts me in an awkward situation everytime someone goes for a handshake. Instead of explaining, now I just offer my left hand and let them feel weird too.

Edit: also, people think your disability is their business. I get it, you’re curious, but it can be traumatizing

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u/beesechurgermorbees Oct 07 '22 All-Seeing Upvote

The pressure to do more than you physically can. All of my disabilities are invisible (Gastroparesis and epilepsy) and it feels like too many adults in my life don't understand that I can't do as much as they think I can.

For example, both of my parents love telling me to " do as much as I can for myself " but fail to see that I already do. I have a hard time standing for long periods of time due to severe stomach pain so I have a caregiver that makes me food and cleans (I'm so incredibly grateful). It feels like they expect me to do as much as I physically can in a day, but don't understand what they are asking of me.

If a normal healthy person gets sick for a few days they can usually get themselves food and water and might have to push through the pain to be able to survive. But I'm constantly sick, if I tried to do that kind of stuff I would be miserable all of the time, instead of having some energy to sit up or be able to talk to people or go outside sometimes.

I just hate that it feels like I'm treated like I'm " giving in " to the pain or not trying hard enough. I just don't think they understand what that would mean for me or that " trying hard enough " won't fix my condition or make me feel better in any way.

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u/littlex-xbones Oct 07 '22

Oh god this one. I can't tell you how many people have asked me when I'm "getting off disability and getting a job". When I explain that I will always be on disability they just seem...disappointed? Like I'm not slaving away as hard as I can or fighting "hard enough".

That's not how disabilities work. 100% effort is different for every person. Telling disabled people to do more or keep fighting can be so, so disrespectful. I won't be cured just because I try and force myself up a flight of stairs without a cane. It will just make things worse.

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u/digitalwyrm Oct 07 '22

I'm ambulatory but use mobility aids (cane and walker.) I've had people hit me with their carts and sneer i was moving too slow. I'm young for both but look much younger and people assume I must be faking it.

Edit spelling

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u/Living_Ad6251 Oct 07 '22

I also use a cane and sometimes walker. When I see a child, i grab onto whatever I can find cause I'm scared they're going to knock me down. I freeze in place til I feel it's safe again. Even supervised kids aren't always aware of their surroundings and can throw me off balance.

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u/BleakBluejay Oct 07 '22 Today I Learned

- Most city sidewalks are absolute dogshit. The tree roots fuck them up, or cracks just occur, and the city does not do proper maintenance to make sure they are wheelchair accessible. I've definitely faceplanted after hitting a crack in uneven sidewalk and getting thrown from my chair.

- On that note, a lot of businesses or houses are not accessible either. Lots of stores in older buildings especially have narrow doors or have a step/curb going into them. I'm fortunate that I have one good leg and I can use it to push myself up backwards. Others are not so fortunate. There's countless friends I simply cannot visit because their apartments don't have elevators or ramps. I couldn't use the bathroom in my own house without crawling on the floor because bathroom doors are narrow.

- Unique body issues. Eating disorders, dysmorphia, and gender dysphoria all have their own unique traits, and so does being physically disabled. The way my back twists, or legs limp (when I am able to walk), definitely gets to me. I can't look in mirrors long.

- On that note, embarrassment. When I first got my amputation, I was really insecure about my prosthetic or people seeing my stump. It can be so jarring to see. I was only thirteen at the time. I'm much wiser now and I don't give a fuck, and when I can wear my leg, I like to go out in shorts so everyone can see my leg and fuck right off.

- Weight gain is easier, too. That should be a no-brainer. It's harder to exercise, and it's easier to stress eat. And of course, it's hard to work off the stress-eating pounds because... well... it's harder to exercise. Swimming is nice and my favored form of exercise, but it's hard getting in and out of the pool if they don't have steps or a slope.

- Being talked down to. I'm an adult in my twenties. I've had jobs. I'm going to university. I'm spoken to like I'm six years old often, both by peers and by healthcare professionals. People can be extremely patronizing. My body is broken, not my brain, but frankly, you shouldn't talk to the mentally disabled like that, either.

- Internalized ableism. It's easy to feel in-the-way and like a burden, and the extreme frustration of not being able to do what you want to do, or what others need you to do.

- People making assumptions. When I've had my prosthetic leg and could walk, I could still only walk short distances. I'd still use my wheelchair when going to the movies or the mall or the airport. Lots of people see a young person in a wheelchair, getting up and walking out of it, and sitting back down in it, and are insulted, thinking I'm lying. They don't know how much pain I'm in going those short distances. I've had people yell at me for being in disabled parking, too.

- Big roads scary. Like so fucking scary. Especially in a wheelchair or other slow mobility device. The timing on the crosswalk is never long enough and I'm vulnerable in this river of cars hoping that they are all kind and patient and observant that day. Just to get to the ramp at the other end that's too steep for me to easily scramble up.

- On that note, a lot of ramps feel so inaccessible to actually be on. They build a 45-degree angle and say "yeah that's up to code". I either need physical assistance in the form of being pushed/pulled up the ramp, or I need to use my one good leg to kick myself up the ramp (which, again, I'm fortunate to have). If I didn't have random strangers asking me to help sometimes, I'd be doomed.

- In a wheelchair, can't shop for groceries without assistance. How am I supposed to carry bags on my lap without them falling off if my method of propulsion is my hands on the wheels?? Best option is to either have someone help me (like my girlfriend, or a close friend), or order groceries online (which is expensive).

- Sex sucks. It can feel so awful to not perform as well as you'd like sexually because you have no stamina or because your endurance for physical pain is so low. The lack of flexibility as well. I learn to do the best I can with what I've got, and I can do it well, but I know I'm not up to standard.

- Pressure sores from sitting all day, or friction sores from propelling my wheelchair all day. Those fuckers take forever to heal. They're evil. I'm dealing with one right now. It sucks getting juices from that wound on everything I sit on and in all my pants.

- Abled-bodied people camp out in the handicap stalls. That's the only place I can go. If they're not broken from people fucking with the equipment, there's some rando in there playing games on his phone for 15 minutes.

- Sometimes handicap stalls are made with the door going in the wrong direction. If it opens inwards towards the toilet... how do you think I'm supposed to close the door when my wheelchair's there? I went to a bar once and was buzzed and went to go piss and the handicap stall was such. Had to just abandon my chair by the sinks and crawl to the toilet. Would prefer someone else's piss on my knees than my own piss in my seat, you know?

- My own pride. I want to do everything myself and prove I am strong and capable. Sometimes I'm not. Sometimes I really really do need help and I should ask for it. There's that joke scene in Scary Movie 2 where David Cross's character carries his own wheelchair up a flight of stairs. I've done that before. It's a joke but I've literally done that before.

I'm sure I could come up with more but this is already a lot LMAO

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u/BleakBluejay Oct 07 '22

OH! Here's a good one!

I'm in university, and most accessible seats for my wheelchair are waaaaay in the back of the classroom. This is tolerable in normal classroom sizes. In lecture halls, it's so far back I can barely hear the professor and can't see the letters on the powerpoint, even with my glasses. There's no other seating for me.

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u/raven_widow Oct 07 '22

Lack of companionship.

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u/jellosbiafra Oct 07 '22 Hugz

That by default, you feel excluded from society, no matter how nice people are to you. Assuming there are mobility issues, just catching up with friends becomes difficult because there's too much effort for the other person to make to meet you

You cannot be spontaneous with your plans at all

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u/voidastarael Oct 07 '22 edited Oct 07 '22 All-Seeing Upvote

Not knowing what the fuck is wrong with you but knowing you're in pain and exhausted but allll the tests come back normal except for elevated inflammatory markers

Edit: also if you have the grip strength but cleaning is still a bit overwhelming for you look into a steam cleaner. No joke. I got one by McCulloch and it makes cleaning so so much easier. I can deep clean and sanitize without having to worry about cleaning products

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u/briannal99 Oct 07 '22 edited Oct 07 '22 Wholesome Narwhal Salute

I'm physically disabled which affects my mobility, which in turn affects my mentality. I feel self conscious about how I walk and how I look. I'm 23, still in college, and last year started to use a walker. I look around campus and see everyone else walking independently, no problems. I definitely feel like all eyes are on me, and not in a good way (although everyone is so nice. I just feel this way for some reason). I wish I could go back to when I was able to walk independently. Sometimes I even wish I wasn't disabled at all. So yeah, being physically disabled can affect you mentally as well

Edit: I also don't like that I had to start using a walker at 22. I knew as I got older my disability would affect me more, I just didn't think it would happen in my early 20s. I'm young but my body feels so much older. I also feel lonely in a way because everyone I know around my age is able-bodied, and here I am walking with a walker that you see elderly people use (although I have a blue colored one, not gray, so that's a little better lol)

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u/BleakBluejay Oct 07 '22 Silver

REALLY REALLY felt this one. Had to use a walker in 4th grade. So fucking embarrassing. There's nothing wrong with it, obviously, but when you're the person in the walker and you're there, surrounded by all these people that aren't... it just sucks. I'm 24 right now and in a wheelchair and I just watch the people walk freely up steps and across lawns and on beach sand at my university and I'm here in my chair feeling bitter. Feels like I'm watching my youth slip between my fingers sometimes.

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u/Seschwanbam Oct 07 '22

The fear to go out with people. Being visually impaired, in my case, means that the second it gets dark I need to be guided. So I'm terrified of going out with people because I don't want them to think of me as a burden.

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u/coolcookie27 Oct 07 '22 All-Seeing Upvote

Limited hours in the day. I get really tired really quickly. Most people have around 16 "usable hours" I do not. Somedays it's 2 some days it's 10. But on the days where it's 2 I still have classes to keep up with. Chores to handle. I feel like I'll start a school week well and think I'll be ahead and something always seems to happen. I have a day or two where I'm wiped out.

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u/MarshmallowFloofs85 Oct 07 '22

you know how so many places have taken benches away because they didn't want to have homeless people sitting on them, Or how places shut down gathering spots because of covid? That.

I can walk short distances, and then I have to stop and sit, because my immune system has decided that my joints are evil and must be destroyed. Unfortunately there's never any place to sit any more.

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u/nicoal123 Oct 07 '22

The amount of people who stand in your way and just ignore you is astounding. I wasn't expecting that. Like, what makes them think this way? I really don't know.

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u/nicoal123 Oct 07 '22

Also when I dream I can still move normally. It's hard to wake up from that and the first thing you see is your walker.

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u/Margali Oct 07 '22

I still have dreams where I am dancing - I would kill to dance with my husband one more times [other than in a dream]

It is funny, I never actually stopped to think about it, in my dreams I can still walk normally.

I have to admit, I love flying dreams, my style of flying is actually swimming in the air, the kicking and arm motions and all, not swooping around like Superman.

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u/cold_toast_n_butter Oct 07 '22

Gotta carry around a big horn to blow at people like that

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u/avatarsharks Oct 07 '22

Automated captions are nice but they're also mainly shitty and shouldn't be substituted for having audio properly transcribed.

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u/AbbyBirb Oct 07 '22

Being treated lesser or like some freakish thing.

Most people are indifferent, which is just fine.

A few people are kind, which is great.

But some people are just down right rude asshats.

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u/WinterWizard9497 Oct 07 '22

Epileptic here. It is so hard for anyone to take my disability seriously. People just look at me and assume I'm just like every other average 20 something year old male. And that just because I'm young means I'm at the prime of my life. But that's just not the case.

It's so bad I'm literally scared to close my eyes for a nap or going to sleep because I'm not sure if I'm just tired or I'm going to wake up in a hospital room again. I can't get a service dog because apparently I'm not entitled one since I drive, though in all honesty the farthest I go by myself is down the street to the grocery store and back.

And then you tak that on with diabetes, and 50 percent of the time I have a hard Time getting out of bed. Everyone just expects me to pretend like there's nothing wrong with me, like I can just turn it off with a wave of a hand.

I remember in my prime I could run for miles, life my brother or father and be able to live a semi normal life. Now, I feel like I'm an old and trapped in a young man's body. I call it a good day if I get some applesauce during the day.

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u/Registered-Nurse Oct 07 '22 edited Oct 07 '22

Hi fellow epileptic 👋🏽 Adding to Op’s comments.

1) not being able to drive really limits where you can go especially if you don’t live in a large city. I live around NYC so it’s not a problem for me.

2) since sleep deprivation triggers my seizures, I have to call out of work on nights I can’t sleep due to my anxiety. Since that technically isn’t a sickness, bosses are often not happy.

3) Cannot swim in the ocean/pool unless someone is around.

4) can’t take a shower/bath when my husband isn’t around.

5) cannot cross the street peacefully.

6) Cannot have more than 1 drink of alcohol without feeling dizzy since my medication is also a depressant.

7) Cannot chew gum without fearing for your life. ( this is a personal choice .. in case I chock on it while having a seizure).

8) going to bed every night wondering if you’ll wake up since SUDEP is a possible reality.

9) cannot get pregnant without careful planning. Take double the mg of folic acid of a normal pregnant woman, monitor seizure drug levels before and during pregnancy, adjust drug levels. And the very possibility of having seizures since pregnancy makes your body clear meds faster.

These are all things we don’t mention and people don’t think about.

Edit: 10) I forgot language and memory problems. It takes longer for me to form sentences when speaking since I forget a lot of words. Memory is also shot.

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u/SanchoVillaWNS Oct 07 '22

Not me but my son he is 8 years old and asks me daddy am I gonna be able to walk like them as I'm wheeling him past the park. Hurts.

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u/Ashvibes17305000 Oct 07 '22

Finally one I can answer. The exhaustion that comes after doing literally everything. Even just sitting in my living room talking with my friends can leave me wiped out for days. The time and cost of seeing doctors here in the US is horrendous. Inaccessible spaces are another issue, as well as the amount of people saying that I'm too young to be sick or disabled at 19.

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u/Margali Oct 07 '22

My final place of employment had 2 doors with automatic openers - the ground floor mens bathroom and womens bathrooom. Any other door in the building I had to either pound to get attention or to phone in to get someone to open the door. And they never salted/sanded the ramp, I was lucky if it got shoveled before midmorning. They let me work form home, until my midlevel boss changed and she started insisting I come in 1 day a week ... and complained when I couldn't get into the building because the ramp was unusable, or I couldn't get anybody to let me into the actually office I needed to get into.

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u/dan4334 Oct 07 '22

Sounds like your boss ought to be waiting at the ramp ready to escort you to work if it's so vital you come in on their orders.

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u/Indicidian Oct 07 '22

High functioning autistic here. All in all i do feel lucky that i function well enough to live a (mostly) normal life. The problem comes in with that “mostly” part, that tiny gap between my level and the level “normal” people are expected to function at. Its incredibly frustrating how i can do ALMOST everything that everyone else can. But theres just these few things that just don’t click with me and it makes me feel like im not as good of a person because of it.

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u/Dirtycarlover Oct 07 '22

I'd say just having to constantly mention I'm disabled. I work in retail and standing around for long periods of time really does a number to my knee. I keep telling my supervisors to get me down for a couple days a week because that's all I can manage without hurting myself yet I'm in day 2 of a 5 day shift streak. I love working at my job but it's getting frustrating having to remind my supervisor of my disability/injury that might not even heal properly if ever again.

Edit: typo

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u/Bobpantyhose Oct 07 '22

I have MS. Sometimes I’m fine, sometimes I’m not. Sometimes it’s a bad day, sometimes it’s pushing myself too hard, sometimes I don’t know what it is. But it really sucks when someone sees me “fine” at 8am and then later at say, 3pm, using a cane, and they make the assumption that now I’m faking it for… attention? special privileges? I dunno. Some disabilities may look like they come and go, and that’s perfectly normal.

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u/ZestySourdough Oct 07 '22

fatigue. i’m always. tired.

oh also you don’t get it. your sprained ankle a year ago is not “basically the same”

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u/matts2 Oct 07 '22

There is one way to be able bodied and 10,000 ways to be disabled. Things that help one disabled person may in fact be a problem for someone else. Lots of people think "disabled" means in a wheelchair permanently or blind. But there are so many other ways.

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u/Analyst_Cold Oct 07 '22

That being mostly bedbound is Expensive and disability income is paltry. If my family isn’t around I have to order food. I have to pay someone to clean my home. Also being in pain 24/7 is physically & mentally exhausting.

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u/JABBYAU Oct 07 '22

I am disabled for other reasons but I have also lost most of my vision (six months) and hearing (18 months) long enough to get a real feel for it. One time I was trying to navigate by bus and I was walking down the street and there was a group of teens. All the teen moved over (I was using a cane) and one saw me and blocked my path. and snickered. My vision was really poor but I could tell. Kept shuffling and then ”accidentally“ hit him so, so hard with my cane and muttered excuse me. His friends laughed so hard.

That is what everyday of disability feels like. Someone out there just intentionally making my life harder or not being helpful. I can drive again but mobility is pretty limited. There is not a single day that I drive somewhere that someone doesnt illegally steal a handicapped spot. There is not a single day where I don’t get judged. And I would be unable to live if I wasnt married.

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u/Truck-0-Saurus Oct 07 '22 edited Oct 07 '22 All-Seeing Upvote

You have to live with the ceaseless grind of your struggle on a day to day, moment to moment basis. Meanwhile, EVERYONE in your life forgets your limitations and acts surprised, or even angry when you refuse to do something they ask of you. You need to protect your own health, and this is highly inconvenient for every one else, apparently. Fuck your pain, they didn't get their thing and now that's your fault.

And to be clear, I'm not severely disabled in the way some are. I don't have to have a wheel chair or prosthetics. I get "days off" where my pain is manageable enough to be normal, even if for just a few hours. And this is almost worse. Were I consigned to a wheel chair, people would understand that no, I can't risk what remains of my lower spine to move your house around because you're bored and don't know what else to do with your life. EVERY movement is precious for me. EVERY activity is a ticking clock, counting down to a month-long catastrophe of extreme pain and near-total immobility if I do not obey my limitation. But because people only really see me when I'm having a good day, they refuse to acknowledge the many more bad days I have to live through.

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u/SmileNo9807 Oct 07 '22 Starry

The complete lack of other people's understanding on what a disability or pain is. They may try to understand, but just say really inappropriate and awful things and don't understand why they are inappropriate or awful.

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u/spicyhotcocoa Oct 07 '22

The sheer amount of time and effort into others believe me. Especially with subs like illnessfakers where they undermine people and scrutinize every action, it’s hard for to see me as disabled when externally look okay

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u/frickinfrackfurt Oct 07 '22

Taking longer to really get that "clean feeling" when wiping your ass

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u/dsac Oct 07 '22

It's like I'm wiping a marker or something.

I'm sorry for your poop problems.

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u/Thejackme Oct 07 '22 All-Seeing Upvote

How your partner “must be really great”. Why? Why must he be great? Because I’m disabled? Apparently I certainly don’t bring anything good to the relationship

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u/irmajerk Oct 07 '22

I'm the partner and carer of a disabled woman and this makes me fucking furious too. Like, I'm with her because she's my best friend, not because I'm a martyr who has "given up on happiness" or some shit.

Also, it really fucks me off the way people will ignore her and address me at counters, or in the street. I'm just pushing, she's the one who is shopping. She can't walk, but she can use a bank card, she can speak, she can fucking think, and she can decide whether she needs a bag or not.

I fucking hate people.

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u/dinosanddais1 Oct 07 '22

I wish I could be clean. Nobody wants to live in cluttered hell holes. Not even hoarders. Messy lifestyles come because there are ten foot walls you have to leap over to do basic shit. I can't shower often because I can't find a shower chair with side and back support. Can't bathe because I could have a vertigo episode and drown. I can't smell so that feeds into this paranoia that I smell bad and people hate me. I recently found out I have a rare fluoride allergy so I have to pay out the ass for compounded toothpaste because fluoride allergies are so rare. I'm terrified my teeth will fall out because my esophageal sphincter is slightly open so rampant acid reflux is damaging my teeth and since I have a god damn fluoride allergy, protecting my teeth got ten times harder.

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u/Mamaclover Oct 07 '22

There is no place to lie down.

Im very independent. I work in healthcare, go to college part time, live alone, drive- but I do use a cane and sometime, my back size up. I get a terrible flair, and to make it pass, I NEED to rest my spine. The quickest way is to find a flat surface, get my spine perfectly straight, and bend upward my knees. Maybe put something under my neck to elevate my head. It help the flare up pass rather quickly, but literally, there is no place to do this in public. At all. Even if I find a public bench in say, a mall, I will probably get harassed by security. A chair with a good supported full back might offer some minor relief too, but those are even more rare to find in public space than a bench. I recently went to my step brother wedding, and had to leave in the middle of the meal because the chairs were only going to our mid back, and I was having such severe pains, I was getting nausea. I had not been able to rest my back since 9 am that day, and it was almost 12 hours later. I managed to find an obscure corner of the venue with a couch, and literally passed out for 45 minutes.

It's incredibly frustrating, and sometime I have to cut my loose and declare a day or an activity not worth it and go home. Happily my friends are all very comprehensive, and let me lie down on their couch when I come over. As for my job. It's mostly done sitting down, and the chair has a high back. So im lucky.

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u/PuzzledSeries8 Oct 07 '22

My dad was physically disabled, he had spinal issues after a car accident, I remember once going to the movies with him and he was in such severe pain he had to lie down but there were no options other than the dirty movie theatre floor. Ushers came to check that he was okay/hadn't collapsed and it was really hard to explain to them that he was okay but also very much not and that he had to lie down so he would be well enough to drive us home, but that they didn't need to call an ambulance

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u/Valianttheywere Oct 07 '22

Eyesight deterioration. Cant read books or any writing on a white background.

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u/chelsealrp Oct 07 '22

The limited amount of energy you have on any given day. And when that energy is depleted, that's it for me; my body just says "nope" and will absolutely stop whatever activity I'm attempting.