Unfortunately the captions on this video are only displaying on some devices. Appears to be a CZcams bug because it looks fine in the back office and when I watch from my account but not on incognito... I’ve raised the problem with the engineer team and they’re sorting it out. Thank you for your patience x
That's the WORST. I hate having th o re-explain what "chronic pain" means to my bosses. Yes, I am hurting most of the time. No, I can't function through the pain the same every day. No, I'm not feeling better it's CHRONIC
I sometimes get something similar from my parents, one of which is also autistic, they think I'm 'laying it on' when I genuinely don't understand something. It's really annoying and pushes the narrative that autistics on the milder end of the spectrum never struggle or something.
All the time! They act like my chronic pain is greatly exaggerated and everyone "has some muscle cramps sometimes" 🙄
Před 5 lety+18
Yes! I totally get that! I've got fibro and I can see it in their faces "so now she decides to use the fibro-card" or the "if you arn't going to help just get out of the way" look...
@ My sister has insisted that I use the "autism card" all the time when I never even mention it once usually. But then she fails to believe that I indeed struggle, I asked her what a baking tray is (wasn't sure what it looked like, or what that meant really) and she was then just like "get out the way, I'll do it, you can't even do basic shit, it's so easy blah blah blah" as if I couldn't do the putting chips on the tray and putting them in the oven part, I just wanted to know I was using the right tray...
So true! I attended a job coaching for people with health issues this year and somehow the jobcentre person told them, the goal for me was to go into a sheltered workshop. She had mentioned this possibility in our talk, but I made clear that this was only the fallback plan. My actual goal was to get a half-time job. Due to this erroneous information, I had much trouble later and was even denied payment help for my resumes, because I should actually not have written and sent any resumes. You know, because I was going to go to a sheltered workshop anyway. On the other hand, when I went into a short internship with a possible employer, they demanded I still attended the job coaching, although that was actually too much for me in addition. They thought I wasn't able to work a normal half-time job, but when I wanted to try it out, they put additional strain on me. Those fuckers. Thankfully it worked out in the end, I have this half-time job now and it's as good as a job can get. The jobcentre, however, has not been any help for this.
Oh my God even if there was people would still ask ridiculously personal questions about the things ON the list. Which would be fine but they'd also be butthurt if you don't want to explain the finest details of how you get on with life.
OH MY GOD! I get this a lot, mainly because all of my disabilities are internal. Back problem, bad joints, neck issues, migraines, and inability to digest processed food... we still don’t know what it is
One misconception constantly projected onto me is "You're not old enough to have this problem" I'm sorry, I didn't realize it's impossible for pain and illness to happen to people under the age of 65
One of my teachers told a kid he was "too young to have a bad back." Kid doesn't have medical illness or anything, he just ends up injured a lot. Usually resulting in some form of back pain. It made no sense.
@@CoRLex-jh5vx I kept getting told my pain was "just growing pains" and the doctor would tell my mum I'm just playing the pain up for attention. Thankfully my mum knew me better
@@LokiStarOmen My mum became my greatest ally, learned all she could about real nutrition, and all about my diseases. We stopped listening to idiot relatives, idiot friends of friends, idiot doctors (we listened to a good one). I am no longer with my mum, but i learned so much about how to run my life, myself. I don't depend on others' opinions, and make my own mind about almost everything. I also eventually found the disability help i needed.
I get it all the time! I’m suffering from chronic back pain and I need to sit on a bus for example and all those grumpy old ladies just stare at me with hatred cause I dared to sit lol
As Vol Gladly I haven’t had that yet. ESPECIALLY when my back plays up. I don’t know what I’d do during a flare up and someone gets annoyed at me for sitting down.
Agree to all! Also would add: Not everyone who uses a wheelchair can’t walk - many people use wheelchairs because they cannot walk far without fatigue or pain or another issue. So don’t stare and gape when someone gets out of a wheelchair. Disability can be invisible - you can have profound problems but temporary put on your brave face and ‘look normal’.
Another thing about wheelchairs, not everybody in a wheelchair has a problem with their legs, my great grandad was in a wheelchair because of his spine, he could use his legs perfectly well and if he needed to move his wheelchair a short distance if he couldnt be bothered using his hands, he would just put his feet on the floor and shuffle forward, people expected him to not be able to use his legs when his legs had nothing to do with the fact he was in a wheelchair, in fact he was just in world war 2, got hit in the back, this messed with his spinal cord so 60 years later when he fell down the stairs, it triggered it.
Beep Beep Indeed. That’s what I meant. I use a wheelchair because I have ME. My legs work, but if I walk or stand too much I get a huge increase in symptoms both at the time, and a long time afterwards. This was not recognised when I applied for PIP. The assessor stated that because I could move my legs and stood briefly when asked to, I had no mobility problems. Took a long and stressful appeal to get the decision overturned.
glad to see this comment. my dad has severe hemophilia which has led to internal bleeding in joints, so all in all he walks but but it's hard for him to do so for a long distance. he used a wheelchair when we went abroad because we walked around the streets of New York, and people stared when he got up from it :/
@@lotusflower474 I actually just did my PIP assessment a couple weeks ago, I have aspergers syndrome, I doubt I'll get it tho, the only reason why I got DLA was because I'm p much housebound except for school
Beep Beep Good luck with PIP. It’s a hard process and they turn a lot of people down who deserve it. But if they do turn you down, remember you can always appeal. I was given 0 points when assessed, which was overturned to 22 points (standard care and enhanced mobility) at tribunal. x
I find the biggest misconception is that disability is fixed, when actually it is variable and some days you *can* do things but other days you just can't, and there is no real reason why.
Ahhh, when I walk into my doctor's office, and the staff want to throw a fucking parade because I didn't use my chair that day. MIRACULOUSLY HEALED!!! :) And their reactions on days when I *do* need my chair, and they ask "what happened??", or better yet, are disgusted that I'm not heroically pushing through my pain and exhaustion just to make THEM feel more comfortable. Thanks, I hate it. :)
Misconception #328: Your identity, experiences, suffering, and concerns aren't valid until one or more medical authority figures give you the thumbs up--until then, you're just "looking for attention", "lazy/not trying hard enough", or "being oversensitive".
YASSS! Oh, yes, I certainly *will* try... Acupuncture... Veganism... Exercise... Eat only cabbage... Shakra healing... Vinegar baths... Eat only protein... Don't eat protein... And on and on and on!
"That dosent sound like [insert medical issue they just admitted they had never hurd of] it probably [insert medical issue that thier family member had and was cured or treated to a manageable level]." My dad does this one way to much when he meat my disabled friends
One thing i also hate is "youre too young to be this sick" Why thank you I know my youth is being wasted on illness, your reminder really brightens my day 🙃🙃
I HATE THIS! One time I had an anxiety attack when a total stranger started ranting "you're too young to be like this, you deserve to live!" erm, I'M LIVING HERE RIGHT NOW! "NO but you have to pray and find a cure cause tyou're too young to be losing your life" OH MAN I'M ALIVE HERE IN FRONT OF YOU, SHUT UP ALREADY! I had to leave the place where I was sitting and walk a little through the hospital and felt wrong and bad for all day and a few days after :(
Being disabled and/or having a chronic illness is actually REALLY EXPENSIVE. Prescription charges, transport costs, hospital parking, equipment you need, doctors agree you need but services see you as “not disabled enough”. And adapting things to fit around your life.
I have a metal health disorder and I've gotten; "Just get over it, everyone gets sad." "What do you mean you don't get it?" "You're too young to be depressed." "You're just being dramatic."
Yep, and the funny thing is that when people telling someone to 'just get over' a mental illness is exactly like telling someone to 'just get over' the flu or virus.
I have tics and I get "Well, you just have to stop doing that" "you're SO EMBARRASSING (usually from my siblings)" "You just want attention (as if I WANT anymore attention)" "Can't you just.. not do that one?" "What do you mean you're in pain? You're fine." (usually after I violently ticced all day). It's so annoying. I don't know what people want me to do to show them proof lmao. I literally cannot stop it-
A big misconception I run into is that disability is consistent. Like, if I can't do something today, it must mean that I can never do it at all, or else I was faking the whole time. Or if I could do something yesterday, it must mean that I can do it today, or else I was just making excuses. Chronic pain has flare-ups! My level of ability is in constant flux!
I deal with that. I've had such terrible leg/knee issues for years now. I was diagnosed with type 2 diabetes around a year ago so I've been getting a lot of blood work done and one of my lab work results came back and it basically said that my bone and muscle mass is deteriorating. There are days that my legs/knees are perfectly fine and, if I wanted, I could walk for miles. Then there are days where I literally struggle to just stand up out of bed. I've had times where I'm at work and because it's a job where I'm on my feet all day, my knees will like randomly buckle and I'll almost collapse. Then a few weeks ago when I took a break to eat some lunch, I stood up and my right leg was like... Just not working. I was literally dragging it so I could continue working. Not sure if that counts as a disability as the leg issues haven't been diagnosed as anything bc my doctor sucks but figured I'd share as I can relate to the on-and-off thing.
@@Charmynox Disability pro-tip: You don't need a doctor, or anyone else, to tell you if you're disabled. We tend to fall into the trap of "Well, other people have it worse, so I don't count as disabled." You count. You are Disabled Enough. Acknowledging your disability, and using disability accommodations, is not taking anything away from other disabled people. Internalized ableism is a bitch, so I know that it's difficult to allow yourself the label, much less the accommodations, but please know that you deserve both.
In grad school I was friends with a woman who is blind. I was shocked how often... 1) in restaurants people asked Me what She would like to order 2) people would give directions to her dog!? Or try to grab the dog’s leash to direct them places. 3) how often customer service workers would try to short change her or give her the food in the hot case that had obviously been there too long. If they did that while someone was standing there... what did they do when she was shopping alone? Maybe I shouldn’t have been all that shocked 😳
I have weird joints and still don't know how someone is supposed to look like when they have this issue. Pretty sure humans don't have cray vision so how would they be able to see it? Makeup also doesn't make my pain worse or better and no neither does the hair color I use.
@@DieAlteistwiederda oh my god we are in an extremely similar position. my joint dislocations and pains are not a text book case so I guess they don't exist! I also love the extra amounts "you don't look sick" when it's coming from the doctors who are supposed to be helping me.
Another misconception is that you get treatment right away so you can go back to work... NOPE. Appointments can take months or a year or longer to get to for certain doctors. Also, there is a lot of trial and error involved into finding out what works for you. You might be undiagnosed for many years too.
I mean I’m not diagnosed yet. I came with a list of symptoms and working through them with my GP, but sessions are short and a month between so after half a year were not even halfway
Waited 2 Months for the scheduler to call me back then 2 more months to see the doctor for my autoimmune disorder... this is is so common in the US. Even ER visits at 3 a.m. when no one's there take hours sitting in the waiting room before you get to go back to the actual room.
I go through this often- if I tell my boss, family, or friends that a medication is helping, they sometimes assume the disability is going away. I wish!
I remember having to go into the DMV to pick up my disabled placard because the one they sent me got lost in the mail. FIRST, the gentleman at the special disability and appointments desk was hostile and said, "this is the disabled line." Me: Yes, I'm disabled, I'm here to pick up my placard. Him: You don't LOOK disabled. Me: And you don't look like you skipped your HR onboarding session but I guess we're both wrong :). And then when I got to the desk of the woman who distributes placards was more benign, but was still along those same lines. "Hey whatever you did to get this quit it and get better ahaha!" ME: I was born, I won't get better. That's why you're giving me the blue (permanent) one, and not the red (temporary) one. Her: oh...(nervous chuckles). Like, the first encounter I expect as I don't always "look" disabled (whatever that means), but the other woman literally just hands out placards all day. That's all that goes on at her station. You'd think she'd be better at not saying stupid shit.
I wanted to tell someone this, I'm super excited. I got a cane recently and it has helped so so so much. (Found a proper decent medical one at an op shop for 5bucks) Then a new friend of mine, bought me a freaking wheeled walker with a seat after hearing me saying something about wanting one at my birthday party. I freaking nearly cried. I didn't have enough money to get one myself and gah.
If you have an invisible disability, you'll spend your life feeling awkward for using accessible facilities such as toilets, and have to carry around some sort of proof or explanation. Or... be forced to physically show your ostomy bag to people as they glare at you judgingly. :|
Yes! Accessible means accessible for multiple reasons. If I’m about to have a meltdown in public, I’m going to use the accessible facilities because they’re quieter. And I shouldn’t have to explain that yes I’m actually disabled.
I felt that last part. I’m had two ostomy’s and no one can tell looking at me but yes, I need the handicap when changing it since the extra space helps.
That people think you can’t possibly actually love a disabled person. “Bless your heart for settling and ruining your future to love someone who will never be independent.” ?????
I freaking hate that. I see that directed at every inter-abled couple I follow on CZcams. It also happens to inter-abled couples in real life, but somewhere in their brains, able bodied people know it’s offensive to say, so they say it a little less in person.
@@ChrisPage68 Stay strong my dude, just keep looking out for possible opportunities and try to make sure you're constantly improving yourself so when you do meet some nice ladies they might realize you're a catch. I'm autistic with a mild speech impediment and have severe knee arthritis, but I've had a decent amount of luck personally. There's been a few people who (rightfully) rejected me even though they didn't mind my disabilities though because I wasn't exactly a decent person at the time though, but in those situations I would have probably been able to date them if I had just been a bit more empathetic /understanding /supportive /manicured /etc. Oh, and also definitely look at other disabled folk for possible dating partners. My best relationships have been with people who had similar disabilities to myself, but in general even if they had vastly different ones we still got on a lot better than I did with most abled people. Good luck out there though bro, I believe in you!
Yea I hate when people use that "oh how sweet bless you" please if god was real he would not make disabled people in the first place, they might aswell just pat our heads like we are animals or something. STOP BEING PATRONIZING WE ARE HUMANS TALK TO US NORMALLY
omg this is so true I have actually lost a good friend because of his constantly saying things like this every day several times a day even after I asked him to stop at the end of the day it just became to much and I stopped calling and told them that I couldn't handle the constant criticism and it was not helpful and that I needed a break that was 6 or 7 years ago.
I had debilitating pain for years and it kept getting worse and I would always hear that I wasn’t doing enough work on my PT to make it get better. Turns out I had a growing spinal tumor that was slowly killing the nerves that controlled my right leg- Which stretch was supposed to fix that one, Karen??
ended up needing 5 surgeries because of this exact thing !! if i just stretched enough my muscles wouldn't be deformed anymore !! right ? ? RIGHT ??? nope, it just delayed the inevitable surgery i would need (by 8 YEARS) to correct my ankles (the left ended up receiving 4 of the surgeries it was so far gone !!)
One of the biggest, strangest ones for me was that it took me so, so long to “admit” i have a disability. People around me tried at all costs to prevent me from using that word specifically, as if the word itself and not the disorders were the thing making it so difficult (and at times outright impossible) to take care of myself or participate in “normal” things. I would be praised all the time for “hiding it well” and “not letting it hold me back”, and that’s so deeply fucked up, that people think those are compliments. What i should be praised for is what i’m doing now-respecting my limits and prioritising taking care of myself, and moving at a pace that makes sense for me towards chasing and reaching my dreams. But i wasn’t. So much internalised ableism, and it still affects me even now. I still feel badly, or like its a personal failure, when i can’t move, when i hurt, when i struggle, when i can’t do anything more than just survive it. I’ve been told over and over and over that if only i did something more, dozens and dozens and hundreds of things more, i wouldn’t struggle-as if the disorders i have aren’t part of what makes everything so difficult in the first place. I’ve not been able to admit i’m in pain for so long that it still feels wrong, somehow, even though i know it’s important that i do so i can seek and access the help that i need. “Disability” isn’t a bad word, isn’t admitting failure or giving up-its a tool to self-compassion, of honouring where i am and what i feel and what pace i can move at towards the things i dream of, of helping myself get help and helping me help myself. It took me so long to even approach that. I’m so, so sad society sees disability as this thing that you have to hate with burning intensity all your life or you’re “making it up for attention”. As if self-love is for able-bodied people only-as if accepting that your disorders are part of your natural or new natural order is wrong and horrible, when in fact, it can be so, so helpful.
11. Our daily activities aren't accompanied by mournful piano music. 12. Just because I look like someone you know who is a wheelchair user, I probably DON'T know them. 🤦
When your first diagnosis is a mental health problem, so then every doctors after that blames it on that. like please don't, just do the tests so i can be diagnosed and go home to bed please.
@@KitchenWitchery this happened to me!!!! I do actually have depression and for years I thought that the fatigue I was feeling was just that, but last winter I had my blood tested to check my hormone balances and they called me like 'oh my god, you need a blood transfusion right now or you could die' - I was walking around nearly fainting from going up stairs and it all got blamed on depression. I swear once you get that diagnosis it becomes a catch-all for everything you can't do.
"You're not really disabled. You're just lazy/making it up. You should just get a job. It will make you better." Or my favourite "Just exercise it away. Feel down? exercise! Your body hurts? Power through the pain and go to the gym! Can't walk? Go for a run. Your arm and shoulder is injured? Have you tried boxing? Because you really should." (Yes they're examples.)
People are suddenly professionals. "My friend's sister's best friend's uncle's wife once had a leg cramp so she put garlic in her socks at night, you should try it!" Ehm, yeah excuse me if I think it won't work with my ripped muscle plus damage over 17 years from mEDS dear 😂
One of the things that upsets me the most about becoming disabled is being made to feel guilty for claiming benefits from a system that I had paid into for many years before all this happened. I miss being able to go out and work. I was self employed running a successful business. I'd paid off my mortgage, no debts. Now I'm all but house bound and most of my friends have drifted away as they don't understand why I 'flake out on them' at the last minute. So yeah I really like the way I have to prove what my doctors and therapists tell me, to a 'qualified' assessor for enough money to get by on. Also trying to complete the huge forms and collect supporting evidence in the 1 month they give me to complete the huge form is more fun with my newfound lack of cognitive agility, short term memory loss, and inability to function and short term memory loss. Then infuriatingly and anxiously wait many many weeks for them to flip a coin to see if they will pay you for the next random period of time.
Tbh I can't stand when people say "i paid into system i shouldn't be made to feel guilty" as that basically translates to me as "well you didn't pay into system you deserve to be made to feel guilty for claiming what you don't deserve as much as me who did pay!!"
@@ecologist_to_be I have these thoughts about myself (having paid into the system only a few months before I got ill) and then a lot of people around me tell me I am valid and allowed to receive money since I am ill and that's what the system is for. It's hard to accept money when one is depressed and thinking oneself is worth nothing. But it's not true. We are valid and still a valuable part of society!
A few things: 1. They don’t miss events/meeting friends/work because they just feel a bit bad-we always feel bad! But sometimes it is so bad we can’t even leave the house. Your idea of sick/having a cold is actually often a GOOD day for someone with chronic illness. 2. People are polite to people who are disabled is actually not true. I’ve had people tell me my cane is fake, had entire subway car that ignored me when I asked for a seat while with my cane, move me while I am in my wheelchair, etc. People often look for “fake” disabled people but this usually means targeting people who don’t look like how they think disabled folks should look.
Once, a guy moved my wheelchair to the edge of the sidewalk to get through the crowd . It tipped forwards and I fell on the road, he just kept walking. Filed a complaint to the police, but they didn't actually search for him.
how callous can people be!! I would never feel okay to not offer a seat to someone who needs it more than I do. I would of course prefer someone who needs it leas than I do to offer theirs first, but if not, I'll suffer.
Once a blind guy got into the metro in Paris and asked outloud if anyone could tell him when the metro stopped at his station and everyone just... Ignored him... I gave him the info on his stop and where there was a free sit and when he got off the metro I saw him aks someone wich way the exit was and he was ignored AGAIN by at least two people before the metro went on and I lost sight of him. Like, there's no way people thought he was asking for money or anything he clearly had a white cane, and he was speaking clearly and politely. I'm still so mad about it. I don't know how he stayed calm and smiling.
A common conversation on campus with older adults for me goes like this... *in an elevator, silence for a second* Them: Did you break your leg in sports or something? Me, over it: Nah, I got hit by a truck and almost died. Damage is permanent, so. Them: O-Oh... my bluntness at such a traumatic incident seems to intimidate people. i use a walker and am working towards a cane, but I have sciatic nerve damage so it's gonna be a longggggg road
My favorite is "Oh, you're too young for that!!" And they scoff and wave a hand and brush off what you've said. As if that statement will magically heal you somehow, or that you must not actually have that limitation and are exaggerating... CHILDREN CAN HAVE LEUKEMIA, SHARON. *I can have a crappy nervous system*.
Yes!! I have an inner ear disorder that causes *fluctuating* hearing loss. But, many people still assume that means my hearing abilities stay the same every day all the time..
For me my biggest hurdle is trying to accept that I have become disabled and that I'm allowed to class myself as disabled - still struggling with it but starting to get there!
The balance is to acknowledge it without making it completely acceptable, in my opinion. If we make it completely acceptable, we also give those who could help change things so disabilities don't have to exist one day less of a reason to keep trying over time.
People will misunderstand your ability level and cognitive functions and treat you like your five 💁🏽♀️ I was stroked by a woman the other day and asked my favourite colour 😂
Can I add: "You can't need those crutches that much if you've done your hair and makeup!" - said to me while I was walking the momumental distance of 100m on my crutches after injuring myself, yet again. Thanks silly joints, and unhelpful silly sausages!
Yes! ALL. THE. TIME. And this is seen as acceptable! I used to reply politely but after 10 years I'm now jaded. So I either respond with "nothing", or I feign ignorance as to what they're talking about and amuse myself as they dig themselves into a hole. But seriously, people should mind their own business.
When I was filling out papers for my my new apartment the manager asked my main form of income. When I told her ssi, she said "But you're not disabled" after I explained it wasn't a visible disability she apologized and said her son's on disability too. So a. you should know better, of all people! And b. Is that supposed to make me feel better? Or forgive you?
She apologized.. I feel like that's enough for forgiveness. I'm hard of hearing and sometimes people will say or do things that are kind of offensive to me by accident. But, after I explain my situation to them, they will usually apologize and then it's all good. People usually mean well so, I forgive when I can.
@@mars7612 it normally would be, but I've had a very hard time with her since the day I filled my papers til now, about 7 months later. I guess I just feel extra anger toward her because of that. She still makes random backhanded comments about my disabilities too, just not that blatant.
I have two favorite ones: 1. people/doctors telling me to "consult with My Professional" as if I have a magical medical oracle somewhere who is very personally invested in my health and knows everything. 2. this doesn't much happen to me but I fear the day when the "you're so inspirational" starts. I don't want to be your role model of perseverance, I'm merely existing and even that sometimes (often) reluctantly.
The 3 most common ones for me are: "I thought only soldiers got PTSD." Plenty of non-military personnel get PTSD in fact some soldiers have civilian PTSD instead of or in addition to military PTSD. Neither is more valid than the other. "I hate how PC everything's become. Why do we even need trigger warnings?" Trigger Warnings help me decide if I'm capable of engaging with the material or not so that I'm able to breathe properly and don't need medical attention. You don't get to decide if Trigger Warnings are necessary for me. Failure to use them will mean I have to isolate myself so I can avoid having panic attacks. I'm tired of having to leave places and groups because nobody there respects my mental health or my disorder. Just because you have the luxury of not needing Trigger Warnings doesn't mean everyone does. "But you're so smart. I don't see how you can be disabled if you're smart." Intelligence has nothing to do with PTSD. Plenty of disabled people are smart.
When social security implies that you can "technically" work so you don't qualify when you literally go into anaphylaxis cuz your dad tried new soap and you passed out going to the kitchen for your meds the other day. Like yeah businesses can totally provide accommodations for someone allergic to everything and passes out if they sit upright "too long" aka more than 5 minutes...
The worst one, the one that plagues me the most, the one I hate more than anything, is one that I'm sure will be familiar and spark a similar instinctive rage in a lot of you. Two little words: *ahem* 'High-functioning'
i DESPISE that term. i was diagnosed with high-functioning autism and it took me a while to get over my own internalised ableism. functioning labels need to be scrapped entirely.
Roisin Rowan I’m autistic and considered high functioning- I still think there should be some sort of classifications system because I can work and live pretty much independently while usually people that are considered low functioning can’t. It’s at least important for the purpose of classifying how much help the autistic person requires. Though really, that should be by a case by case basis- not by high or low. Really makes me feel like I’m not disabled enough. I’m saying I understand why these labels exist- I just wish The whole thing was approached differently.
And then there is: Shiny Aspie (Which is a warning tag in and of itself) I used to not get the issue with functioning labels and why they changed Autism and Aspergers into one and then I ran across an article explaining a term I’d never seen before ‘Shiny Aspie’ about how ‘high functioning autistics’ are held up to show we can be ‘normal’ while others are discarded for ‘not being good enough’. Basically the functioning labels and autism vs Aspergers added additional road blocks in the path of the some autistics while the other autistics are gate kept from the help and support they need because they ‘aren’t disabled enough’. Both sides lose, it merely splits them apart and sets them against each other. ‘Not normal but not disabled enough for help’ or ‘too disabled to function’ that is what functioning labels and autism vs Aspergers boil down to and how the world sees them. Shiny Aspie is merely a word that highlights exactly how autistics are used/set against each other via the pain and misunderstandings these labels have caused by ‘simplifying’ things. They might simplify things but they simply them way too much.
Inu disablity is undiagnosed or moderate learning disablity , but I was slow learning how to talk and walk because of a mishandled birth my brain was starved of oxegen I was left too long. I was told it could be brain damege, but my parents have to put me under autism when I was going though the school system
oh people are AWARE of autism, but they treat us like shit and force us through abusive 'therapies'. but yeah, for the most part it's all about depression and anxiety, and fuck you if you have anything else. even the people pushing for more mental health awareness just completely overlook things like psychosis, personality disorders, etc
Jade Story oh of course they do! I wasn’t trying to denounces them, I was just trying to point out that a lot of ppl think that those are the only two mental disorders/disabilities and there’s nothing else -yet there /are/ others
My main two: 1. Doctors can be great, but they can also really, really suck. While trying to work out why I was getting debilitating vertigo that stopped me leaving my bed for a few days at a time, I did some research and found that Menières disease was a possible cause. I mentioned this to a doctor, and she agreed I had the symptoms, but she wouldn't be doing any tests or referring me to the hospital because I was too young to have Menières. 2. Employers can act like they're understanding of your chronic condition, but still give you a bollocking because you have too much time off work...due to your chronic condition you made sure they knew all about.
I feel you so much with work. My work told me that I needed to reduce the number of sick day I took or face a disiplinary. My direct manager told me I needed to try harder. Apparently I should have been able to walk to work and stand up for 8 hours on really bad pain days, becasue it loooked bad on their abscence report.
The disabled parking is really great, and there is loads of it. No and No. Able bodied people think that a community that consists of millions and millions of people can make due with one to 5 parking spaces (in the U.S) and some of those parking spaces are rendered unusable when people park on the access space (where the diagonal lines are....which is ALWAYS a no parking zone).
One my wife gets a lot is "I cant do that I hurt to much, My joints, my back, my stomach" and she is answered with something along the lines of "Well my back and joins hurt to and I'm older so imagine how I feel" Its really annoying. Unfortunately there isn't much we can say at the moment because she is still waiting for a confirmed diagnosis so we cant even say "Yeah but you don't have a connective tissue disorder so shut up!" I guess it kinda goes along the lines or "You are to young to have that problem"
Okay, my mother has a chronically ill friend who, due to her illness, needs a wheelchair to move around. She cannot walk. She lives in the flat on the first floor, but the couple of the steps prevent her from leaving her flat. However, they could have installed a device (I don't really know what to call it) that could allow her to get to the entrance of the building by herself. It wouldn't be in the way of other people living in that building, yet 3 neighbours didn't agree to that adjustment they would not pay a penny for. They did not build the thing. She still can't leave her flat by herself. That's sickening.
Misconception: People with disabilities can't finish higher education. I know you finished university and I just graduated law school and passed the bar exam!
Yes! I am in high school right now and everyone, teachers and my family included, tell me I can't study medicine. They have been telling me for years, but I don't care.
but also: being looked down on for not being able to finish a degree or only being able to attend sporadically. according to one of my lecturers "if you aren't going to take this seriously, you should leave so a proper student can attend"
I've got one. Even if the school says it's all inclusive, more often than not people will still not understand your disabilities. E.g. I'm half deaf, partially blind and am prone to fainting, seizures, handing cramping, falling and panic attacks. And only now (after 5 years) in my last year of secondary school, my school has just offered me an interpreter.
I understand what you are going through. I have been at my school for 5 years now and I was forced to attend P.E. Lessons (failed them obvio) although I have chronic pain. One teacher just straight up failed me for not showing up to a test while I was in bed having having a fever attack.
@@maximellow5745 Yeah I take alot of time off cause I'm either in hospital or stuck in bed. And the amount of absences and fines my parents have got. I had to go into school with a stack of around 300 pages, notes, medical forms, prescriptions just so they believed me, even though my doctors regularly email my school to keep them in the loop. What's even worse is that I got an extremely passive aggressive letter saying if I took anymore time off, I couldn't stay at that school.
School systems will not understand anything ever. Oh you're in crippling pain and can't even get out of bed well you should still be in school. Oh your migraine is making it impossible to concentrate but school is important.
I'm not considered disabled, but I can definitely relate to this... It took me three years to make my school understand that I need to use and have access to the lift because otherwise I will fall down the stairs when I'm in pain
My husband has people glare at him when they bumped, ran into and in some cases rammed his power chair when all he was doing was sitting still. Not moving.
People running in front of you chair/scooter. They do NOT stop instantly!! Of course it's your fault. I have had people stare straight at me and continue walking right into me then complain why I didn't move!
I needed #10 right now. My biggest one is that if you're disabled, you'll feel like you are disabled. I've been listed as disabled in one form or another for the last eight years, but it never seems quite true. I always feel like I'm faking it.
I just often want my disability to be taken seriously by ALL medical professionals 😂 I have fibromyalgia and chronic costochondritis (far easier to look up than explain) but I'm in pain 24/7, on a lot of pain medication and need a walking stick to get around at only 21 years old. I've been sent to a physiotherapist (UK so NHS) and she just snatched my stick off of me and told me "fibromyalgia isn't real, it's in your head so you don't need that stick, especially at 21, it's all for attention". Cut to me falling over in pain with my mum getting me off the floor 🙄 so yeah, that happened...
There are always lots of vacant Disability parking spaces available, it won't matter if I park here for a couple of minutes.. 🙄 My brother learned that this is not true when I went to visit him and I had my Disability Parking sticker with me, he actually said oh great now we won't have any trouble finding a parking spot. I just turned to him and said " you think? you just wait and see ". Not once while I was with him did he find one vacant.😅
As someone with Crohn, I hear way too much about gluten intolerance when it has NOTHING to do with my disease (Cutting out gluten only reduces gluten when your body reacts to it, you’d think it would be common sense and yet when people hear bowel inflammation...)
Anna Really? People assume it’s Crohn sometimes? Gluten and lactose intolerance I get it but in my case everyone has vaguely heard of Crohn’s by a distant relative that now follows paleo or something but no one ever assumes it’s an IBD when I say my symptoms or that I can or can’t eat this and that And if you don’t mind me asking, what’s your diagnosis?
Getting asked if you can plan when you’ll have flares. I just laughed the first time I was asked that. Also, I definitely didn’t expect how much fun it’d be to make abled people uncomfortable by telling them how excited you are about a new mobility aid.
zahnpastacremetube the misplaced “empathy” from abled people who assume that you being disabled is worse than death? Yeah, it’s pretty fun to disrupt that by showing any joy while being disabled, lol
@@zahnpastacremetube If they were empathetic, they would be excited with me. If they are uncomfortable about my use of a mobility aid that will make my life easier, they are not empathetic, they are self-important ableist doofuses.
I needed this today, thank you so much Jessica. As a younger person who has recently become disabled, I find myself banging my head off doors at "the system", because I don't fit in the boxes of *elderly* or *dying*. The expectation is that I can "just get on with it" when it really doesn't work like that. I've been told that until I no longer need medical devices, I can't return to work, because naturally it's entirely my choice to rely on equipment to have normal human functions, silly people. They need to make an attitude adjustment along with those reasonable ones. There are of course, those who do (think they) understand, however they just look at me with pity, as though I'm some lost injured kitten, when I'm still the same feisty 24yo, I just have the added bonus of a few barriers to deal with. Afterall, who needs to watch TV when you're living a medical drama?! I'd never wish disability on anyone, but sometimes I do wish people could walk a day in my shoes... or rather, spend the day in bare feet because socks and shoes are too hard to get on lol. You are truly inspiring, and I love your sense of humour, infact your smiley sarcasm is how I approach most situations in life! Thank you for raising awareness, thank you for being open and honest, for changing minds and perceptions around disability. Thank you for being you. Much love from Devon x
@@Bhilithinn unfortunately yes, because I've been there less than two years, I don't have full employment rights. It would also mean some changes to my contract, because some (minor) duties wouldn't be possible. So without those changes I'd effectively be in breach of my contract, so they can dismiss me. :/
Your comment resonated with me because it sounds similar to mine (disabled at 23, ignorant employers, cold toes 🤣). I can't promise it gets better but there are decent employers out there who will recognise what you can being to the job instead of trying to calculate future sick absence in their heads. It's frustrating when you're battling so hard just for something as basic as being able to work when your friends are progressing through their careers. Good luck with everything. You seem to be a "go-getter" - you're just an equipped go-getter now.
it feels like one more misconception is that an accessible place = a "normal" place but with wheelchair ramps. As if that was the only accomodation someone could need
Wheelchair users don't come to my university because *it's literally not accessible*. They have one article about disability on their website and it's about one student who apparently doesn't need any help, thus no disabled student should be asking any help. Everyone can study without any help according to my uni, because that one student can.
Or the disability is more invisible like mine. Outside of frequent psychiatric and psychological care, it doesn't seem as obvious unless the migraine rears up. I just don't like crowds to begin with. Migraine shows up, eyes sometimes won't even stay open.
I also have chronic migraines, along with occasional seizure-like episodes (currently in back and forth conversations with my neuro about what exactly these episodes are)
@@Daniellesummer678 I believe mine are related to increased stress and my sensitivity to light (which also is part of my autism and irlen syndrome). At certain times, either out of nowhere or during extra stress, they get worse or more prominent to me and it's really hard to cope with.
Elise Markey the belief is it’s something to do with stress but I also deal with bipolar disorder so i have to be super on top of my stress management level bc of both conditions. The weird part is I take medications that are anti-convulsants (Lamictal) for my BP 2 and Topamax to prevent the migraines and the episodes keep happening. I’ll all of a sudden get extremely dizzy, my legs go out from under me, my head jerks, my speech becomes garbled or stuck, and my right side becomes weak or completely numb. Lasts for about 10 minutes at the most. Been going on since June 2017. Complex migraine or hemiplegic migraine is what I’ve been told. Noting I’ve tried seems to make them stop. Just had one last Thursday. Migraines are the pits, right??
Jessica, I was wondering if you would consider doing a video about using sticks/canes/crutches and people's reactions. I was recently diagnosed with ME and I'm new to using a stick. My dad just keeps saying "you don't need that!" And "you'll be fine"! I did however have VERY positive experience at Edinburgh airport when I flew for the first time recently. Despite not using the special assistance staff, I was invited to jump queues using shortcuts, was offered a wooden cane to use while my stick was scanned and everyone was SO helpful and lovely. Would love to hear about your experiences in more detail. Love to you, Claudia and Clara x
Me: *wears tinted glasses* Sister: why do you have to wear those to read when your vision is fine?? Me: bc I have an annoying visual processing condition where if I read normal books, menus, forms, websites, documents, etc. (black text on white background) or if I am in bright light for too long, it's harder for me to concentrate, everything gets blurry and I get pain and a lot of fatigue very quickly. Sister: That's not a thing, you're just faking it. Me: I have a formal diagnosis from a licensed optometrist. It's not uncommon for autistic people to have it as well. Also why would I get my college to pay like £200+ for glasses that I don't need, just to be a victim? What do you take me for? Sister: I still don't believe you. Sadly, this actually happened.
@@El-mu4tr Gee, that sounds awful! My condition is pretty similar to yours, actually. Not only I have trouble reading things with a white background, If the text is toi small It gets mire difficult. That's why I either use an amplifier at school ir ask for papers to be printed in a larger size. Also, I don't have peripheral vision, so I to be a bit unaware of the world around me. This causes me walk slowly and a bit weirdly, and some people make fun of me. Ps: Sorry for the bad english
I need reading glasses because I'm so far sighted that close up things are blurry, but my glasses are super short sighted so to see far away things I have to take them off, makes sense right? Seems like nobody I know irl seems to understand that when my glasses are off, I cant see things close up and when my glasses are on I cant see things far away
I once met somebody in high school that thought people that were color-blind could fix it by wearing glasses I literally had to explain to a senior in high school that that's not how it works
If we say we are in pain (and that usually means a lot more then joe public could stand), then we are just moaning/crying wolf. Yet if we say nothing we must be fine and in no pain!
1. [ 1:16 ] It doesn't get you lots of attention 2. [ 1:43 ] You also won't be getting lots of money 3. [ 2:10 ] No team of glamorous doctors will be diagnosing you 4. [ 2:36 ] There will not be a miracle medical cure 5. [ 3:05 ] You won't get the medical or mobility equipment that you need 6. [ 3:41 ] You don't actually get a carer all the time 7. [ 4:14 ] Random people will talk to you 8. [ 4:36 ] People will not talk to you (they'll speak to an able-bodied person instead) 9. [ 4:56 ] The world isn't actually that accessible 10. [ 5:30 ] You still have a voice! my least favorite assumption people make about disability, in particular chronic pain, is that we're somehow meant to attenuate to it so that 'our normal' which is excruciating and debilitating, becomes just the same as anyone else's normal - and so we're able to function like everyone else, as though we aren't actually disabled. also, contrary to what so many people want to believe, you cannot simply self-discipline your way out of hereditary disorders!
I had spinal fusion surgery and my consultants had contacted a dietitian to help me put on weight before it. The dietitian only contacted us after I had woken up from the surgery. We had waited for months only for them to be useless and especially condescending when we told them that we literally didn’t need them anymore.
"You just like going places with your dog" yep its why A LOT of money and time was spent training her and ps when you travel with a dog all the time it's like traveling with another person she requires her own bag because food etc.. I love my labrador lifeline but I would rather just not be broken AF and not need her but without her, I will have no advance warning of a cardiac event or low oxygen and geez that is kind of important...... this is kind of timely in my life right now. Love your videos!!
It looks like you DO like going places with your dog, since she helps keep you alive! Geez. Some people and their stupid comments. 🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️
The best one is when you’re using your wheelchair (there are many reasons someone may need one, fyi. Not being able to walk long distances, easy exhaustion, fall risk, etc) and you get up to transfer to a chair in a restaurant and the waiter goes “oh my gosh, you can walk. You surprised me!” 🤔
I'm so tired of people thinking that I'm going to "get better". It has been many, many years and I have gradually progressed which is obvious so what makes people think I'm going to magically improve? I understand that they don't want this for me but sending me info on a new Dr or medication isn't helpful. I have a good team of Dr's, if there was something new they'd be all over it. There are so many things you just can't imagine - until you are living it. Love your attitude! 👍🤗
And having to prove to all the administrative bodies every year that, no, my chronic issue which has been going on for 22 years now, did not magically vanish since my last application.
Constantly trying to hide how sick you really are, and working twice as hard as everyone else. In order to avoid ablism and convince my employer I am a valuable employee.
I have a disability, and part of it is a facial deformity, so I guess here are some facial deformities misconceptions lol cw, ableism, plus some talk of acid attacks 1) no, believe it or not, not everybody with a facial marking is a victim of an acid attack ! 2) yes, I'm aware I look different. I've had this for eighteen years, I KNOW 3) no, I actually don't really get all that offended when people stare. obviously there's a difference between looking at someone cause they look different (we all do it!) and just straight up gawping, but in general? I don't care. moving on from that point, I don't actually get too offended if people ask questions about it ! that's all I can think of right now lol
The classic just because i look okay on the outside, doesnt mean i am not in a lot of pain, putting all my energy to be standing right now, can we please sit down!!! Ive had a lot of converstations recently of people asking if i am actually disabled.
I might add that it is so painfully hard to get diagnosed. I'm not physically disabled, but I do have autism, and it took endless nagging to get my psychiatrist to even admit that she thinks I might have it. And then getting a legal diagnosis is a nightmare that I can't afford anyways. On a happier note, love you, Jessica! You always make my day better!
oh god - and it isn't just once either! i'm lucky that my mum acts as my carer/advocate, particularly with paperwork and phone calls. i'm sorry crazy bureaucrats, but i'm currently on such heavy meds that those signatures probably aren't legally binding.
And they often expect you to get it back to them in 3-5 days, including the time it takes to be mailed. I’m disabled, and not a miracle worker. Let’s all assume this isn’t going to happen.
I can never take a train without someone coming up to me. I've had people ask if they could touch me to bless my arms and legs in the name of God to try and cure me. Awkward!
Spot on! Although in the US, we only have ourselves to rely upon. Living 30 yrs w autoimmune issues/degenerative spine, I've been accosted several times while using my handicap parking. Name calling and accusations... Bc I don't look like I need one. They have no idea what it took for me to just get out of the house. I just think to myself, Thank God I'm not stupid!! I'll carry my burdens while still having compassion for others! Lovely channel! Keep on keeping on & SHINE❣️🌟Love from Cheyenne, Wyoming USA 🤠
Those 19 steps up to the court building are *so useful * when you're attending a pip tribunal 🙄 like seriously. I'm 33 (not quite a fossil thank you very much) but I feel like I'm giving a medical lecture every time I give a new locum doctor my med history 😐 then theres the usual, but you look fine 🤬 sweetie, even a demon would reject this body . Zero stars , not fit for purpose 🧟♀️
There's the 'Song of Nations' by a Cartoonshow called Animaniacs. I feel like that every time I meet a new doctor. Truth be told I don't get it right always, but to be honest they never realy care. It's more about getting an impression.
My favorite is the people that tell you that the documented disability you have dose not exists, your doctors and teachers lied to you. You just need to try harder, and take more vitamin D.
Yep had that. The very next day I got a call from my Dr to say 'We think your aorta might be leaking (my dad died of an aortic anurism). Can you get to Stoke hospital now (about 40 miles away) or shall we send you an ambulance!'
Boys will be boys, it's all big pharma selling you drugs, drugging your children to make them sit still is not the right thing to do when you can treat them with this wonderful new diet and essential oils. except I'm a girl and I need that medication, I'm also over 18 but my ADHD didn't magically turn off on my 18th birthday, there is no cure, there us just coping and treatment.
"I can't imagine what it would be like without the NHS." As an American, I can tell you it's exactly the same, you just might get the police and a lawyer coming to your home to rifle around looking for things of value to take when you can't make your bills. That happened to my mother who was dying in the bedroom at the time, thankfully oblivious to what was going on. Thankfully they didn't get anything worthwhile. Just thing, all that just to be ignored by doctors and treated as worthless.
Unless you have a visible disability (and sometimes even when you do) people will assume you are faking things and complain about having to accommodate you and if its someone at work/school you unfortunately cant just yell "IM SO SORRY SHARON YOURE RIGHT! IT WAS SO VERY INCONSIDERATE TO HAVE THAT GRAND MAL SEIZURE AND TAKE A FEW DAYS OFF TO RECOVER!! YEAH IT TOTALLY WASNT A BIG DEAL! IM JUST SUCH A BIG BABY" bc you have to remain professional even when others arent
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Unfortunately the captions on this video are only displaying on some devices. Appears to be a CZcams bug because it looks fine in the back office and when I watch from my account but not on incognito... I’ve raised the problem with the engineer team and they’re sorting it out. Thank you for your patience x
Whew! It's not just my device... I hope it gets fixed soon, because your videos are awesome!
I lost a sister when I became disabled. She cursed me out on FB and unfriended me
I think 8 is covid (p.s. I'm kidding I have some disability more like fucking curses)
A common one for me is people thinking that if you can do something once, you can do it all the time.
Yes! Like you'll have a good day where you're able to do something and then that automatically means you're better!
Or they don't understand what you're limitations actually are, and make assumptions based on that.
That's the WORST. I hate having th o re-explain what "chronic pain" means to my bosses. Yes, I am hurting most of the time. No, I can't function through the pain the same every day. No, I'm not feeling better it's CHRONIC
this right here
Or alternatively(?)
"Yes I did the thing, but it took a lot of time and/or energy, and now I'm exhausted"
The worst is when they decide your just over dramatic and can power through if you weren't lazy. My mom gets that a lot.
I sometimes get something similar from my parents, one of which is also autistic, they think I'm 'laying it on' when I genuinely don't understand something. It's really annoying and pushes the narrative that autistics on the milder end of the spectrum never struggle or something.
All the time! They act like my chronic pain is greatly exaggerated and everyone "has some muscle cramps sometimes" 🙄
Yes! I totally get that! I've got fibro and I can see it in their faces "so now she decides to use the fibro-card" or the "if you arn't going to help just get out of the way" look...
@ My sister has insisted that I use the "autism card" all the time when I never even mention it once usually. But then she fails to believe that I indeed struggle, I asked her what a baking tray is (wasn't sure what it looked like, or what that meant really) and she was then just like "get out the way, I'll do it, you can't even do basic shit, it's so easy blah blah blah" as if I couldn't do the putting chips on the tray and putting them in the oven part, I just wanted to know I was using the right tray...
YES. I had to fight for years to get out of P.E. in my School.
You will spend half your life convincing people you're healthy enough to do things. And the other half convincing people you're really sick
So true! It's like you need to prove how sick you are and every time you feel a bit better they'll be there to "catch you out"... I sound so bitter!
I know, right? 🤯
Meeeeeee
🙌🏻 this
So true!
I attended a job coaching for people with health issues this year and somehow the jobcentre person told them, the goal for me was to go into a sheltered workshop. She had mentioned this possibility in our talk, but I made clear that this was only the fallback plan. My actual goal was to get a half-time job.
Due to this erroneous information, I had much trouble later and was even denied payment help for my resumes, because I should actually not have written and sent any resumes. You know, because I was going to go to a sheltered workshop anyway.
On the other hand, when I went into a short internship with a possible employer, they demanded I still attended the job coaching, although that was actually too much for me in addition.
They thought I wasn't able to work a normal half-time job, but when I wanted to try it out, they put additional strain on me.
Those fuckers.
Thankfully it worked out in the end, I have this half-time job now and it's as good as a job can get.
The jobcentre, however, has not been any help for this.
The other big one is always "You don't LOOK disabled!" Like there's gonna be a flashing sign advertising whatever list of ailments
Oh my God even if there was people would still ask ridiculously personal questions about the things ON the list. Which would be fine but they'd also be butthurt if you don't want to explain the finest details of how you get on with life.
Wait y'all didn't get it tattooed on your forehead?? I thought that was mandatory
"WARNING! DISABLED PERSON INCOMING" because everyone must know at all times ffs
It's like they are so chocked when they find out, like we have to start any new contact with "First I'm disabled even though I may not look it..."
OH MY GOD! I get this a lot, mainly because all of my disabilities are internal. Back problem, bad joints, neck issues, migraines, and inability to digest processed food... we still don’t know what it is
One misconception constantly projected onto me is "You're not old enough to have this problem" I'm sorry, I didn't realize it's impossible for pain and illness to happen to people under the age of 65
One of my teachers told a kid he was "too young to have a bad back." Kid doesn't have medical illness or anything, he just ends up injured a lot. Usually resulting in some form of back pain. It made no sense.
@@CoRLex-jh5vx if he has back pain a lot sounds like something may be going on somewhere!
@@CoRLex-jh5vx I kept getting told my pain was "just growing pains" and the doctor would tell my mum I'm just playing the pain up for attention. Thankfully my mum knew me better
@@LokiStarOmen My mum became my greatest ally, learned all she could about real nutrition, and all about my diseases. We stopped listening to idiot relatives, idiot friends of friends, idiot doctors (we listened to a good one). I am no longer with my mum, but i learned so much about how to run my life, myself. I don't depend on others' opinions, and make my own mind about almost everything. I also eventually found the disability help i needed.
The only “problem” you’re too young for is being a senior citizen.
It gets very annoying when you are young with a chronic illness and people just dismiss it as you being very dramatic🙄
especially when its doctors...
I get it all the time! I’m suffering from chronic back pain and I need to sit on a bus for example and all those grumpy old ladies just stare at me with hatred cause I dared to sit lol
As Vol Gladly I haven’t had that yet. ESPECIALLY when my back plays up. I don’t know what I’d do during a flare up and someone gets annoyed at me for sitting down.
Agree to all!
Also would add:
Not everyone who uses a wheelchair can’t walk - many people use wheelchairs because they cannot walk far without fatigue or pain or another issue. So don’t stare and gape when someone gets out of a wheelchair.
Disability can be invisible - you can have profound problems but temporary put on your brave face and ‘look normal’.
Another thing about wheelchairs, not everybody in a wheelchair has a problem with their legs, my great grandad was in a wheelchair because of his spine, he could use his legs perfectly well and if he needed to move his wheelchair a short distance if he couldnt be bothered using his hands, he would just put his feet on the floor and shuffle forward, people expected him to not be able to use his legs when his legs had nothing to do with the fact he was in a wheelchair, in fact he was just in world war 2, got hit in the back, this messed with his spinal cord so 60 years later when he fell down the stairs, it triggered it.
Beep Beep Indeed. That’s what I meant. I use a wheelchair because I have ME. My legs work, but if I walk or stand too much I get a huge increase in symptoms both at the time, and a long time afterwards.
This was not recognised when I applied for PIP. The assessor stated that because I could move my legs and stood briefly when asked to, I had no mobility problems. Took a long and stressful appeal to get the decision overturned.
glad to see this comment. my dad has severe hemophilia which has led to internal bleeding in joints, so all in all he walks but but it's hard for him to do so for a long distance. he used a wheelchair when we went abroad because we walked around the streets of New York, and people stared when he got up from it :/
@@lotusflower474 I actually just did my PIP assessment a couple weeks ago, I have aspergers syndrome, I doubt I'll get it tho, the only reason why I got DLA was because I'm p much housebound except for school
Beep Beep Good luck with PIP. It’s a hard process and they turn a lot of people down who deserve it. But if they do turn you down, remember you can always appeal. I was given 0 points when assessed, which was overturned to 22 points (standard care and enhanced mobility) at tribunal. x
I find the biggest misconception is that disability is fixed, when actually it is variable and some days you *can* do things but other days you just can't, and there is no real reason why.
So true! Some days I can drive to town and use my scooter to go to the cinema. Other days I can barely get from the lounge to the bathroom!
I really wish that could be possible, but just like with global problems: "As long as I don't see/feel it myself it's not real! hurr durr"
SevCaswell yes. And it’s awful because people will think you’re faking it and I can promise you that we’re not
Ahhh, when I walk into my doctor's office, and the staff want to throw a fucking parade because I didn't use my chair that day. MIRACULOUSLY HEALED!!! :)
And their reactions on days when I *do* need my chair, and they ask "what happened??", or better yet, are disgusted that I'm not heroically pushing through my pain and exhaustion just to make THEM feel more comfortable.
Thanks, I hate it. :)
This. And when it's your loved ones that do it, it can make it so much more difficult to open up and admit when you're struggling or need help.
Misconception #328: Your identity, experiences, suffering, and concerns aren't valid until one or more medical authority figures give you the thumbs up--until then, you're just "looking for attention", "lazy/not trying hard enough", or "being oversensitive".
everyone knows illnesses only appear when you're given a slip of paper with Official Diagnosis written on it!
Your eyes don't work? Let me talk louder and slower so you can hear me better!
oh, the logic!
🙄🤦🏾♀️ People. My goodness
"How many fingers am I holding up?"
SillyCanadian totally the same with autism
@@crystalalpaca9859 Every hecking time!
Everyone suddenly becomes a medical expert about your disability when you're diagnosed 🙃
YASSS! Oh, yes, I certainly *will* try... Acupuncture... Veganism... Exercise... Eat only cabbage... Shakra healing... Vinegar baths... Eat only protein... Don't eat protein... And on and on and on!
"That dosent sound like [insert medical issue they just admitted they had never hurd of] it probably [insert medical issue that thier family member had and was cured or treated to a manageable level]." My dad does this one way to much when he meat my disabled friends
One thing i also hate is "youre too young to be this sick" Why thank you I know my youth is being wasted on illness, your reminder really brightens my day 🙃🙃
I HATE THIS! One time I had an anxiety attack when a total stranger started ranting "you're too young to be like this, you deserve to live!" erm, I'M LIVING HERE RIGHT NOW! "NO but you have to pray and find a cure cause tyou're too young to be losing your life" OH MAN I'M ALIVE HERE IN FRONT OF YOU, SHUT UP ALREADY! I had to leave the place where I was sitting and walk a little through the hospital and felt wrong and bad for all day and a few days after :(
_All the children who died from illnesses be like:_
Being disabled and/or having a chronic illness is actually REALLY EXPENSIVE. Prescription charges, transport costs, hospital parking, equipment you need, doctors agree you need but services see you as “not disabled enough”. And adapting things to fit around your life.
I swear the "not disabled enough" has to be their motto for mobility aids and equipment 😭
I have a metal health disorder and I've gotten; "Just get over it, everyone gets sad." "What do you mean you don't get it?" "You're too young to be depressed." "You're just being dramatic."
Yep, and the funny thing is that when people telling someone to 'just get over' a mental illness is exactly like telling someone to 'just get over' the flu or virus.
I have tics and I get "Well, you just have to stop doing that" "you're SO EMBARRASSING (usually from my siblings)" "You just want attention (as if I WANT anymore attention)" "Can't you just.. not do that one?" "What do you mean you're in pain? You're fine." (usually after I violently ticced all day). It's so annoying. I don't know what people want me to do to show them proof lmao. I literally cannot stop it-
A big misconception I run into is that disability is consistent. Like, if I can't do something today, it must mean that I can never do it at all, or else I was faking the whole time. Or if I could do something yesterday, it must mean that I can do it today, or else I was just making excuses. Chronic pain has flare-ups! My level of ability is in constant flux!
I deal with that. I've had such terrible leg/knee issues for years now. I was diagnosed with type 2 diabetes around a year ago so I've been getting a lot of blood work done and one of my lab work results came back and it basically said that my bone and muscle mass is deteriorating. There are days that my legs/knees are perfectly fine and, if I wanted, I could walk for miles. Then there are days where I literally struggle to just stand up out of bed. I've had times where I'm at work and because it's a job where I'm on my feet all day, my knees will like randomly buckle and I'll almost collapse. Then a few weeks ago when I took a break to eat some lunch, I stood up and my right leg was like... Just not working. I was literally dragging it so I could continue working.
Not sure if that counts as a disability as the leg issues haven't been diagnosed as anything bc my doctor sucks but figured I'd share as I can relate to the on-and-off thing.
So much this!
@@Charmynox Disability pro-tip: You don't need a doctor, or anyone else, to tell you if you're disabled. We tend to fall into the trap of "Well, other people have it worse, so I don't count as disabled." You count. You are Disabled Enough. Acknowledging your disability, and using disability accommodations, is not taking anything away from other disabled people. Internalized ableism is a bitch, so I know that it's difficult to allow yourself the label, much less the accommodations, but please know that you deserve both.
Rithene
Thanks Abu
In grad school I was friends with a woman who is blind. I was shocked how often...
1) in restaurants people asked Me what She would like to order
2) people would give directions to her dog!? Or try to grab the dog’s leash to direct them places.
3) how often customer service workers would try to short change her or give her the food in the hot case that had obviously been there too long. If they did that while someone was standing there... what did they do when she was shopping alone?
Maybe I shouldn’t have been all that shocked 😳
The giving her old food or not proper amount of change is a failure to deliver on their responsibility to the person paying for their goods
The misconception: you don't look sick/disabled, so you are fine (or worse: you're overreacting). Reaaaally needs to stop.
I have weird joints and still don't know how someone is supposed to look like when they have this issue.
Pretty sure humans don't have cray vision so how would they be able to see it?
Makeup also doesn't make my pain worse or better and no neither does the hair color I use.
@@DieAlteistwiederda oh my god we are in an extremely similar position. my joint dislocations and pains are not a text book case so I guess they don't exist!
I also love the extra amounts "you don't look sick" when it's coming from the doctors who are supposed to be helping me.
Another misconception is that you get treatment right away so you can go back to work... NOPE. Appointments can take months or a year or longer to get to for certain doctors.
Also, there is a lot of trial and error involved into finding out what works for you.
You might be undiagnosed for many years too.
I mean I’m not diagnosed yet. I came with a list of symptoms and working through them with my GP, but sessions are short and a month between so after half a year were not even halfway
And treatments that worked for a while can sometimes just ... stop working.
Waited 2 Months for the scheduler to call me back then 2 more months to see the doctor for my autoimmune disorder... this is is so common in the US. Even ER visits at 3 a.m. when no one's there take hours sitting in the waiting room before you get to go back to the actual room.
And treatment frequently doesn’t make it go away, only make it more manageable. And that can be after years of trial and error
I go through this often- if I tell my boss, family, or friends that a medication is helping, they sometimes assume the disability is going away. I wish!
That chronic pain? It doesn't go away just because that would be *really* convenient for someone else.
yeah, it doesn't go away no matter how convenient it would be even for the one who's actually in pain, who knew!
I remember having to go into the DMV to pick up my disabled placard because the one they sent me got lost in the mail.
FIRST, the gentleman at the special disability and appointments desk was hostile and said, "this is the disabled line."
Me: Yes, I'm disabled, I'm here to pick up my placard.
Him: You don't LOOK disabled.
Me: And you don't look like you skipped your HR onboarding session but I guess we're both wrong :).
And then when I got to the desk of the woman who distributes placards was more benign, but was still along those same lines.
"Hey whatever you did to get this quit it and get better ahaha!"
ME: I was born, I won't get better. That's why you're giving me the blue (permanent) one, and not the red (temporary) one.
Her: oh...(nervous chuckles).
Like, the first encounter I expect as I don't always "look" disabled (whatever that means), but the other woman literally just hands out placards all day. That's all that goes on at her station. You'd think she'd be better at not saying stupid shit.
1. That is so so fucking terrible to deal with
2. Your direct reply/standing up for yourself to the woman gives me life ❤️
I wanted to tell someone this, I'm super excited.
I got a cane recently and it has helped so so so much. (Found a proper decent medical one at an op shop for 5bucks)
Then a new friend of mine, bought me a freaking wheeled walker with a seat after hearing me saying something about wanting one at my birthday party. I freaking nearly cried. I didn't have enough money to get one myself and gah.
Yay for you and your friend! :)
venus in your profile pic!!
@@colorbar.s Yeah it's my art I did a couple of years ago :D
that is so awesome!! I'm happy for you!
So happy you're more mobile now!
If you have an invisible disability, you'll spend your life feeling awkward for using accessible facilities such as toilets, and have to carry around some sort of proof or explanation. Or... be forced to physically show your ostomy bag to people as they glare at you judgingly. :|
omg that last part :O
I have an ostomy too and hate the silent judgement for using the disabled bathroom.
I'm so sorry you experience that. My mom had an ostomy bag for a few years and there were all sorts of things that would stress her out about it.
Yes! Accessible means accessible for multiple reasons. If I’m about to have a meltdown in public, I’m going to use the accessible facilities because they’re quieter. And I shouldn’t have to explain that yes I’m actually disabled.
I felt that last part. I’m had two ostomy’s and no one can tell looking at me but yes, I need the handicap when changing it since the extra space helps.
That people think you can’t possibly actually love a disabled person. “Bless your heart for settling and ruining your future to love someone who will never be independent.”
?????
I haven't met many women who would go out with a Disabled man. It just seems to happen to other people. 😭
I freaking hate that. I see that directed at every inter-abled couple I follow on CZcams. It also happens to inter-abled couples in real life, but somewhere in their brains, able bodied people know it’s offensive to say, so they say it a little less in person.
@@ChrisPage68 Stay strong my dude, just keep looking out for possible opportunities and try to make sure you're constantly improving yourself so when you do meet some nice ladies they might realize you're a catch. I'm autistic with a mild speech impediment and have severe knee arthritis, but I've had a decent amount of luck personally. There's been a few people who (rightfully) rejected me even though they didn't mind my disabilities though because I wasn't exactly a decent person at the time though, but in those situations I would have probably been able to date them if I had just been a bit more empathetic /understanding /supportive /manicured /etc.
Oh, and also definitely look at other disabled folk for possible dating partners. My best relationships have been with people who had similar disabilities to myself, but in general even if they had vastly different ones we still got on a lot better than I did with most abled people. Good luck out there though bro, I believe in you!
Yea I hate when people use that "oh how sweet bless you" please if god was real he would not make disabled people in the first place, they might aswell just pat our heads like we are animals or something. STOP BEING PATRONIZING WE ARE HUMANS TALK TO US NORMALLY
This one hit hard oof
“You can’t be disabled, you look fine” and all the variations thereof.
If I had a pound for every time....
Alan Abbott I would be on a yacht travelling the world with my sign interpreter if I had a pound for every time
@@darcyhinton1116 if I had a pound, I'd be able to get the specialist complicated therapy that can help, but the NHS doesn't fund.
Ah, the loveley looks I get every time I sit on the disabled seats on the bus...
Alan Abbott I’d be able to afford the specialist care and aid I need. And I dearly needed financial cushion. And a holiday.
Because I have great friends, when I got diagnosed my mates actually did throw me a party!
That's awesome!!
Love supportive friends like that who can make a [potentially long] journey have a bright spot
Didn’t get a party but some friends actually celebrated my diagnosis as if in a party, after fighting my ass off to get a diagnosis.
Those _are_ great friends!
The biggest misconception I get is people thinking I can get over it if I do enough physical therapy 🤦🏽♀️
omg this is so true I have actually lost a good friend because of his constantly saying things like this every day several times a day even after I asked him to stop at the end of the day it just became to much and I stopped calling and told them that I couldn't handle the constant criticism and it was not helpful and that I needed a break that was 6 or 7 years ago.
I had debilitating pain for years and it kept getting worse and I would always hear that I wasn’t doing enough work on my PT to make it get better.
Turns out I had a growing spinal tumor that was slowly killing the nerves that controlled my right leg- Which stretch was supposed to fix that one, Karen??
ended up needing 5 surgeries because of this exact thing !!
if i just stretched enough my muscles wouldn't be deformed anymore !! right ? ? RIGHT ???
nope, it just delayed the inevitable surgery i would need (by 8 YEARS) to correct my ankles (the left ended up receiving 4 of the surgeries it was so far gone !!)
One of the biggest, strangest ones for me was that it took me so, so long to “admit” i have a disability. People around me tried at all costs to prevent me from using that word specifically, as if the word itself and not the disorders were the thing making it so difficult (and at times outright impossible) to take care of myself or participate in “normal” things. I would be praised all the time for “hiding it well” and “not letting it hold me back”, and that’s so deeply fucked up, that people think those are compliments. What i should be praised for is what i’m doing now-respecting my limits and prioritising taking care of myself, and moving at a pace that makes sense for me towards chasing and reaching my dreams. But i wasn’t. So much internalised ableism, and it still affects me even now. I still feel badly, or like its a personal failure, when i can’t move, when i hurt, when i struggle, when i can’t do anything more than just survive it. I’ve been told over and over and over that if only i did something more, dozens and dozens and hundreds of things more, i wouldn’t struggle-as if the disorders i have aren’t part of what makes everything so difficult in the first place. I’ve not been able to admit i’m in pain for so long that it still feels wrong, somehow, even though i know it’s important that i do so i can seek and access the help that i need. “Disability” isn’t a bad word, isn’t admitting failure or giving up-its a tool to self-compassion, of honouring where i am and what i feel and what pace i can move at towards the things i dream of, of helping myself get help and helping me help myself. It took me so long to even approach that. I’m so, so sad society sees disability as this thing that you have to hate with burning intensity all your life or you’re “making it up for attention”. As if self-love is for able-bodied people only-as if accepting that your disorders are part of your natural or new natural order is wrong and horrible, when in fact, it can be so, so helpful.
A Small Tree I remember when I discovered the disabled community and realised disabled was a word that could bring people together.
Very well said...
This made me cry in how relatable it is. Thank you for putting together the beautiful and difficult words ❤️❤️❤️❤️
11. Our daily activities aren't accompanied by mournful piano music.
12. Just because I look like someone you know who is a wheelchair user, I probably DON'T know them. 🤦
😂😂
i wish my daily activities were accompanied by mournful piano music!
I had to face the “knowing every wheelchair user on planet” issue once. So stupid!
When your first diagnosis is a mental health problem, so then every doctors after that blames it on that. like please don't, just do the tests so i can be diagnosed and go home to bed please.
@@KitchenWitchery this happened to me!!!! I do actually have depression and for years I thought that the fatigue I was feeling was just that, but last winter I had my blood tested to check my hormone balances and they called me like 'oh my god, you need a blood transfusion right now or you could die' - I was walking around nearly fainting from going up stairs and it all got blamed on depression. I swear once you get that diagnosis it becomes a catch-all for everything you can't do.
"You're not really disabled. You're just lazy/making it up. You should just get a job. It will make you better."
Or my favourite
"Just exercise it away. Feel down? exercise! Your body hurts? Power through the pain and go to the gym! Can't walk? Go for a run. Your arm and shoulder is injured? Have you tried boxing? Because you really should." (Yes they're examples.)
My parents and doctors say those to me all the time...
if one more person tells me yoga will solve all my problems I'm going to snap
People are suddenly professionals.
"My friend's sister's best friend's uncle's wife once had a leg cramp so she put garlic in her socks at night, you should try it!"
Ehm, yeah excuse me if I think it won't work with my ripped muscle plus damage over 17 years from mEDS dear 😂
Also ewww. garlic.
@@marQP2 garlic in food is good man, I just don't wanna put it in my socks 😂
One of the things that upsets me the most about becoming disabled is being made to feel guilty for claiming benefits from a system that I had paid into for many years before all this happened. I miss being able to go out and work. I was self employed running a successful business. I'd paid off my mortgage, no debts. Now I'm all but house bound and most of my friends have drifted away as they don't understand why I 'flake out on them' at the last minute.
So yeah I really like the way I have to prove what my doctors and therapists tell me, to a 'qualified' assessor for enough money to get by on. Also trying to complete the huge forms and collect supporting evidence in the 1 month they give me to complete the huge form is more fun with my newfound lack of cognitive agility, short term memory loss, and inability to function and short term memory loss. Then infuriatingly and anxiously wait many many weeks for them to flip a coin to see if they will pay you for the next random period of time.
I'm in the same place. Don't give up, keep at it.
Preach! 🙏
Tbh I can't stand when people say "i paid into system i shouldn't be made to feel guilty" as that basically translates to me as "well you didn't pay into system you deserve to be made to feel guilty for claiming what you don't deserve as much as me who did pay!!"
@@ecologist_to_be I don't think he is aiming that at us.
@@ecologist_to_be I have these thoughts about myself (having paid into the system only a few months before I got ill) and then a lot of people around me tell me I am valid and allowed to receive money since I am ill and that's what the system is for. It's hard to accept money when one is depressed and thinking oneself is worth nothing. But it's not true. We are valid and still a valuable part of society!
A few things:
1. They don’t miss events/meeting friends/work because they just feel a bit bad-we always feel bad! But sometimes it is so bad we can’t even leave the house. Your idea of sick/having a cold is actually often a GOOD day for someone with chronic illness.
2. People are polite to people who are disabled is actually not true. I’ve had people tell me my cane is fake, had entire subway car that ignored me when I asked for a seat while with my cane, move me while I am in my wheelchair, etc. People often look for “fake” disabled people but this usually means targeting people who don’t look like how they think disabled folks should look.
Not moving someone in a wheelchair without thier permission should be a no-brainer
Once, a guy moved my wheelchair to the edge of the sidewalk to get through the crowd .
It tipped forwards and I fell on the road, he just kept walking.
Filed a complaint to the police, but they didn't actually search for him.
how callous can people be!! I would never feel okay to not offer a seat to someone who needs it more than I do. I would of course prefer someone who needs it leas than I do to offer theirs first, but if not, I'll suffer.
Once a blind guy got into the metro in Paris and asked outloud if anyone could tell him when the metro stopped at his station and everyone just... Ignored him... I gave him the info on his stop and where there was a free sit and when he got off the metro I saw him aks someone wich way the exit was and he was ignored AGAIN by at least two people before the metro went on and I lost sight of him. Like, there's no way people thought he was asking for money or anything he clearly had a white cane, and he was speaking clearly and politely. I'm still so mad about it. I don't know how he stayed calm and smiling.
Being disabled is wanting to work and not being able to because they cut your support off if you try.
A common conversation on campus with older adults for me goes like this...
*in an elevator, silence for a second*
Them: Did you break your leg in sports or something?
Me, over it: Nah, I got hit by a truck and almost died. Damage is permanent, so.
Them: O-Oh...
my bluntness at such a traumatic incident seems to intimidate people.
i use a walker and am working towards a cane, but I have sciatic nerve damage so it's gonna be a longggggg road
My favorite is "Oh, you're too young for that!!" And they scoff and wave a hand and brush off what you've said. As if that statement will magically heal you somehow, or that you must not actually have that limitation and are exaggerating...
CHILDREN CAN HAVE LEUKEMIA, SHARON. *I can have a crappy nervous system*.
People expect the disability to affect you the same way, every day, all the time,
Yes!! I have an inner ear disorder that causes *fluctuating* hearing loss. But, many people still assume that means my hearing abilities stay the same every day all the time..
For me my biggest hurdle is trying to accept that I have become disabled and that I'm allowed to class myself as disabled - still struggling with it but starting to get there!
Hang in there--it is ok to be disabled, ok to apply for help, etc etc.
The balance is to acknowledge it without making it completely acceptable, in my opinion. If we make it completely acceptable, we also give those who could help change things so disabilities don't have to exist one day less of a reason to keep trying over time.
Me too!! Even after 15 years it seems like I’m living in a nightmare.
@@jwb52z9 that's not true.
People will misunderstand your ability level and cognitive functions and treat you like your five 💁🏽♀️
I was stroked by a woman the other day and asked my favourite colour 😂
Pokes woman in the face: "Black - LIKE YOUR EYES!" 🤣
People will think you can either do everything or you can't do anything.
Wow, that's so impressively rude on her part!
Ikr they pat your head and think you just watch children shows on cbbies or something, I enjoy dark comedy cartoons made for adults.
Can I add: "You can't need those crutches that much if you've done your hair and makeup!" - said to me while I was walking the momumental distance of 100m on my crutches after injuring myself, yet again. Thanks silly joints, and unhelpful silly sausages!
"I usually don't do my hair and make-up with my legs."
🤣
Stranger seeing a 25 year old on crutches - Oh no what have you done silly?!
Won the genetic lottery I suppose?
Yes! ALL. THE. TIME. And this is seen as acceptable! I used to reply politely but after 10 years I'm now jaded. So I either respond with "nothing", or I feign ignorance as to what they're talking about and amuse myself as they dig themselves into a hole.
But seriously, people should mind their own business.
nifferwilko depends how nice I'm feeling! Sometimes I just go with, I'm disabled. People get quiet when you bring out the other D word 😂
OMG MOODDDD! I got that so much when I used a cane/wheelchair, but for some reason on a rollator people kinda just avert their eyes XD
When I was filling out papers for my my new apartment the manager asked my main form of income. When I told her ssi, she said "But you're not disabled" after I explained it wasn't a visible disability she apologized and said her son's on disability too. So a. you should know better, of all people! And b. Is that supposed to make me feel better? Or forgive you?
She apologized.. I feel like that's enough for forgiveness. I'm hard of hearing and sometimes people will say or do things that are kind of offensive to me by accident. But, after I explain my situation to them, they will usually apologize and then it's all good. People usually mean well so, I forgive when I can.
@@mars7612 it normally would be, but I've had a very hard time with her since the day I filled my papers til now, about 7 months later. I guess I just feel extra anger toward her because of that. She still makes random backhanded comments about my disabilities too, just not that blatant.
she should not have commented at all! At least she apologized which is more than most will do. Still not okay and you have every right to be upset!
People for some reason think it's okay to ask you really personal questions about your disability.
They can ask, but we don't owe them an answer unless they are a doctor.
I have two favorite ones:
1. people/doctors telling me to "consult with My Professional" as if I have a magical medical oracle somewhere who is very personally invested in my health and knows everything.
2. this doesn't much happen to me but I fear the day when the "you're so inspirational" starts. I don't want to be your role model of perseverance, I'm merely existing and even that sometimes (often) reluctantly.
The 3 most common ones for me are: "I thought only soldiers got PTSD." Plenty of non-military personnel get PTSD in fact some soldiers have civilian PTSD instead of or in addition to military PTSD. Neither is more valid than the other.
"I hate how PC everything's become. Why do we even need trigger warnings?" Trigger Warnings help me decide if I'm capable of engaging with the material or not so that I'm able to breathe properly and don't need medical attention. You don't get to decide if Trigger Warnings are necessary for me. Failure to use them will mean I have to isolate myself so I can avoid having panic attacks. I'm tired of having to leave places and groups because nobody there respects my mental health or my disorder. Just because you have the luxury of not needing Trigger Warnings doesn't mean everyone does.
"But you're so smart. I don't see how you can be disabled if you're smart." Intelligence has nothing to do with PTSD. Plenty of disabled people are smart.
When social security implies that you can "technically" work so you don't qualify when you literally go into anaphylaxis cuz your dad tried new soap and you passed out going to the kitchen for your meds the other day. Like yeah businesses can totally provide accommodations for someone allergic to everything and passes out if they sit upright "too long" aka more than 5 minutes...
The worst one, the one that plagues me the most, the one I hate more than anything, is one that I'm sure will be familiar and spark a similar instinctive rage in a lot of you.
Two little words:
*ahem*
'High-functioning'
In my country (& language) we sometime speak of 'high level' autism/autist and I am like 'what are we talking about here? Pokemon?'
i DESPISE that term. i was diagnosed with high-functioning autism and it took me a while to get over my own internalised ableism. functioning labels need to be scrapped entirely.
Roisin Rowan I’m autistic and considered high functioning- I still think there should be some sort of classifications system because I can work and live pretty much independently while usually people that are considered low functioning can’t. It’s at least important for the purpose of classifying how much help the autistic person requires.
Though really, that should be by a case by case basis- not by high or low. Really makes me feel like I’m not disabled enough. I’m saying I understand why these labels exist- I just wish The whole thing was approached differently.
Just reading made me nauseous.
And then there is: Shiny Aspie
(Which is a warning tag in and of itself)
I used to not get the issue with functioning labels and why they changed Autism and Aspergers into one and then I ran across an article explaining a term I’d never seen before ‘Shiny Aspie’ about how ‘high functioning autistics’ are held up to show we can be ‘normal’ while others are discarded for ‘not being good enough’.
Basically the functioning labels and autism vs Aspergers added additional road blocks in the path of the some autistics while the other autistics are gate kept from the help and support they need because they ‘aren’t disabled enough’. Both sides lose, it merely splits them apart and sets them against each other.
‘Not normal but not disabled enough for help’ or ‘too disabled to function’ that is what functioning labels and autism vs Aspergers boil down to and how the world sees them.
Shiny Aspie is merely a word that highlights exactly how autistics are used/set against each other via the pain and misunderstandings these labels have caused by ‘simplifying’ things. They might simplify things but they simply them way too much.
Not every mental disability/disorder is depression or autism!
I would say even autism isn’t considered, unless it’s someone higher on the spectrum.
Inu disablity is undiagnosed or moderate learning disablity , but I was slow learning how to talk and walk because of a mishandled birth my brain was starved of oxegen I was left too long. I was told it could be brain damege, but my parents have to put me under autism when I was going though the school system
oh people are AWARE of autism, but they treat us like shit and force us through abusive 'therapies'. but yeah, for the most part it's all about depression and anxiety, and fuck you if you have anything else. even the people pushing for more mental health awareness just completely overlook things like psychosis, personality disorders, etc
Even deppression and autism are still a disability and have serious effects on life.
Jade Story oh of course they do! I wasn’t trying to denounces them, I was just trying to point out that a lot of ppl think that those are the only two mental disorders/disabilities and there’s nothing else -yet there /are/ others
You forgot the one where you have to explain what your disability is more then a million times.
My main two:
1. Doctors can be great, but they can also really, really suck. While trying to work out why I was getting debilitating vertigo that stopped me leaving my bed for a few days at a time, I did some research and found that Menières disease was a possible cause. I mentioned this to a doctor, and she agreed I had the symptoms, but she wouldn't be doing any tests or referring me to the hospital because I was too young to have Menières.
2. Employers can act like they're understanding of your chronic condition, but still give you a bollocking because you have too much time off work...due to your chronic condition you made sure they knew all about.
I feel you so much with work. My work told me that I needed to reduce the number of sick day I took or face a disiplinary. My direct manager told me I needed to try harder. Apparently I should have been able to walk to work and stand up for 8 hours on really bad pain days, becasue it loooked bad on their abscence report.
The disabled parking is really great, and there is loads of it. No and No. Able bodied people think that a community that consists of millions and millions of people can make due with one to 5 parking spaces (in the U.S) and some of those parking spaces are rendered unusable when people park on the access space (where the diagonal lines are....which is ALWAYS a no parking zone).
My favorite: doctors gaslight their patients. If the doctor doesn't have the answer then the patient must be crazy.
Disabilities also can vary from day to day, and just bc today I can do a thing doesn't mean tomorrow I can.
And frequently you can’t do a thing today because you did a thing yesterday.
One my wife gets a lot is "I cant do that I hurt to much, My joints, my back, my stomach" and she is answered with something along the lines of "Well my back and joins hurt to and I'm older so imagine how I feel" Its really annoying. Unfortunately there isn't much we can say at the moment because she is still waiting for a confirmed diagnosis so we cant even say "Yeah but you don't have a connective tissue disorder so shut up!" I guess it kinda goes along the lines or "You are to young to have that problem"
Okay, my mother has a chronically ill friend who, due to her illness, needs a wheelchair to move around. She cannot walk. She lives in the flat on the first floor, but the couple of the steps prevent her from leaving her flat. However, they could have installed a device (I don't really know what to call it) that could allow her to get to the entrance of the building by herself. It wouldn't be in the way of other people living in that building, yet 3 neighbours didn't agree to that adjustment they would not pay a penny for.
They did not build the thing. She still can't leave her flat by herself.
That's sickening.
Mobility aids make you incredibly noticeable and invisible at the same time.
Misconception: People with disabilities can't finish higher education. I know you finished university and I just graduated law school and passed the bar exam!
Well done!
congrats!
Many of us never started, because we were not encouraged to think it was a possibility. Also, well done!
Yes! I am in high school right now and everyone, teachers and my family included, tell me I can't study medicine. They have been telling me for years, but I don't care.
but also: being looked down on for not being able to finish a degree or only being able to attend sporadically. according to one of my lecturers "if you aren't going to take this seriously, you should leave so a proper student can attend"
I've got one. Even if the school says it's all inclusive, more often than not people will still not understand your disabilities.
E.g. I'm half deaf, partially blind and am prone to fainting, seizures, handing cramping, falling and panic attacks. And only now (after 5 years) in my last year of secondary school, my school has just offered me an interpreter.
I understand what you are going through.
I have been at my school for 5 years now and I was forced to attend P.E. Lessons (failed them obvio) although I have chronic pain. One teacher just straight up failed me for not showing up to a test while I was in bed having having a fever attack.
@@maximellow5745 Yeah I take alot of time off cause I'm either in hospital or stuck in bed. And the amount of absences and fines my parents have got. I had to go into school with a stack of around 300 pages, notes, medical forms, prescriptions just so they believed me, even though my doctors regularly email my school to keep them in the loop. What's even worse is that I got an extremely passive aggressive letter saying if I took anymore time off, I couldn't stay at that school.
My school have known about my disability for 3 years now and they havent even offered me any support whatsoever.
School systems will not understand anything ever. Oh you're in crippling pain and can't even get out of bed well you should still be in school. Oh your migraine is making it impossible to concentrate but school is important.
I'm not considered disabled, but I can definitely relate to this... It took me three years to make my school understand that I need to use and have access to the lift because otherwise I will fall down the stairs when I'm in pain
My husband has people glare at him when they bumped, ran into and in some cases rammed his power chair when all he was doing was sitting still. Not moving.
I simply love it when, after someone crashes into me & my wheelchair, they say, "why don't you watch where you're going!?!?!?".
@@daisyblossomflowerchild9702 Or that dance where you move to go round them, and the Normie goes in the same direction! 💥
@PageMonster I have occasionally asked such people if they'd like to dance. The look on their faces is priceless.
People running in front of you chair/scooter. They do NOT stop instantly!! Of course it's your fault. I have had people stare straight at me and continue walking right into me then complain why I didn't move!
I needed #10 right now.
My biggest one is that if you're disabled, you'll feel like you are disabled. I've been listed as disabled in one form or another for the last eight years, but it never seems quite true. I always feel like I'm faking it.
1 your child may not use my mobility equipment as i need it. 2 just cause i can walk a few steps dosnt mean i dont need my cane or my wheelchair
I just often want my disability to be taken seriously by ALL medical professionals 😂 I have fibromyalgia and chronic costochondritis (far easier to look up than explain) but I'm in pain 24/7, on a lot of pain medication and need a walking stick to get around at only 21 years old. I've been sent to a physiotherapist (UK so NHS) and she just snatched my stick off of me and told me "fibromyalgia isn't real, it's in your head so you don't need that stick, especially at 21, it's all for attention". Cut to me falling over in pain with my mum getting me off the floor 🙄 so yeah, that happened...
Oh my gosh that's horrible!!!!! She should have been sacked :C I had a gp say I wasn't autistic as its 'just a convient diagnosis for naughtyness' -_-
I had a doctor tell me he didn't believe in chronic fatigue syndrome. Well, I don't believe in Jesus--they are not equivalent types of things.
Seriously that's awful, I've fibro too and the first time I took costochondritis, I thought I was having a heart attack. It's horrible.
There are always lots of vacant Disability parking spaces available, it won't matter if I park here for a couple of minutes.. 🙄
My brother learned that this is not true when I went to visit him and I had my Disability Parking sticker with me, he actually said oh great now we won't have any trouble finding a parking spot. I just turned to him and said " you think? you just wait and see ". Not once while I was with him did he find one vacant.😅
As someone with Crohn, I hear way too much about gluten intolerance when it has NOTHING to do with my disease
(Cutting out gluten only reduces gluten when your body reacts to it, you’d think it would be common sense and yet when people hear bowel inflammation...)
Anna Really? People assume it’s Crohn sometimes? Gluten and lactose intolerance I get it but in my case everyone has vaguely heard of Crohn’s by a distant relative that now follows paleo or something but no one ever assumes it’s an IBD when I say my symptoms or that I can or can’t eat this and that
And if you don’t mind me asking, what’s your diagnosis?
Getting asked if you can plan when you’ll have flares. I just laughed the first time I was asked that.
Also, I definitely didn’t expect how much fun it’d be to make abled people uncomfortable by telling them how excited you are about a new mobility aid.
So you think it's fun to make empathic people uncomfortable?
zahnpastacremetube the misplaced “empathy” from abled people who assume that you being disabled is worse than death? Yeah, it’s pretty fun to disrupt that by showing any joy while being disabled, lol
@@zahnpastacremetube If they were empathetic, they would be excited with me.
If they are uncomfortable about my use of a mobility aid that will make my life easier, they are not empathetic, they are self-important ableist doofuses.
@@lydiacastro3233 Ahh, now I get it 🙂
@@emilyboj I think I got it the wrong way, sorry!
I needed this today, thank you so much Jessica.
As a younger person who has recently become disabled, I find myself banging my head off doors at "the system", because I don't fit in the boxes of *elderly* or *dying*. The expectation is that I can "just get on with it" when it really doesn't work like that. I've been told that until I no longer need medical devices, I can't return to work, because naturally it's entirely my choice to rely on equipment to have normal human functions, silly people. They need to make an attitude adjustment along with those reasonable ones. There are of course, those who do (think they) understand, however they just look at me with pity, as though I'm some lost injured kitten, when I'm still the same feisty 24yo, I just have the added bonus of a few barriers to deal with. Afterall, who needs to watch TV when you're living a medical drama?!
I'd never wish disability on anyone, but sometimes I do wish people could walk a day in my shoes... or rather, spend the day in bare feet because socks and shoes are too hard to get on lol.
You are truly inspiring, and I love your sense of humour, infact your smiley sarcasm is how I approach most situations in life! Thank you for raising awareness, thank you for being open and honest, for changing minds and perceptions around disability. Thank you for being you.
Much love from Devon x
Wait is that even legal? Can a workplace not allow you to return because you need assistive devices?
@@Bhilithinn unfortunately yes, because I've been there less than two years, I don't have full employment rights. It would also mean some changes to my contract, because some (minor) duties wouldn't be possible. So without those changes I'd effectively be in breach of my contract, so they can dismiss me. :/
Your comment resonated with me because it sounds similar to mine (disabled at 23, ignorant employers, cold toes 🤣). I can't promise it gets better but there are decent employers out there who will recognise what you can being to the job instead of trying to calculate future sick absence in their heads. It's frustrating when you're battling so hard just for something as basic as being able to work when your friends are progressing through their careers.
Good luck with everything. You seem to be a "go-getter" - you're just an equipped go-getter now.
it feels like one more misconception is that an accessible place = a "normal" place but with wheelchair ramps. As if that was the only accomodation someone could need
And then the ramp is really short and steep.
Wheelchair users don't come to my university because *it's literally not accessible*.
They have one article about disability on their website and it's about one student who apparently doesn't need any help, thus no disabled student should be asking any help. Everyone can study without any help according to my uni, because that one student can.
Or the disability is more invisible like mine. Outside of frequent psychiatric and psychological care, it doesn't seem as obvious unless the migraine rears up. I just don't like crowds to begin with.
Migraine shows up, eyes sometimes won't even stay open.
I also get constant headaches/migraines as well :/
I also have chronic migraines, along with occasional seizure-like episodes (currently in back and forth conversations with my neuro about what exactly these episodes are)
@@Daniellesummer678 I believe mine are related to increased stress and my sensitivity to light (which also is part of my autism and irlen syndrome). At certain times, either out of nowhere or during extra stress, they get worse or more prominent to me and it's really hard to cope with.
Elise Markey the belief is it’s something to do with stress but I also deal with bipolar disorder so i have to be super on top of my stress management level bc of both conditions. The weird part is I take medications that are anti-convulsants (Lamictal) for my BP 2 and Topamax to prevent the migraines and the episodes keep happening. I’ll all of a sudden get extremely dizzy, my legs go out from under me, my head jerks, my speech becomes garbled or stuck, and my right side becomes weak or completely numb. Lasts for about 10 minutes at the most. Been going on since June 2017. Complex migraine or hemiplegic migraine is what I’ve been told. Noting I’ve tried seems to make them stop. Just had one last Thursday.
Migraines are the pits, right??
Chronic vestibular migraines and recently diagnosed with bipolar type 2 and Hashimoto thyroiditis 👍😅
Jessica, I was wondering if you would consider doing a video about using sticks/canes/crutches and people's reactions. I was recently diagnosed with ME and I'm new to using a stick. My dad just keeps saying "you don't need that!" And "you'll be fine"! I did however have VERY positive experience at Edinburgh airport when I flew for the first time recently. Despite not using the special assistance staff, I was invited to jump queues using shortcuts, was offered a wooden cane to use while my stick was scanned and everyone was SO helpful and lovely. Would love to hear about your experiences in more detail. Love to you, Claudia and Clara x
Me: *has low vision*
Teacher: Why do you have to sit in the front desk If you wear glasses?!
BiTcH aM I a JOke To YoU?!
Me: *wears tinted glasses*
Sister: why do you have to wear those to read when your vision is fine??
Me: bc I have an annoying visual processing condition where if I read normal books, menus, forms, websites, documents, etc. (black text on white background) or if I am in bright light for too long, it's harder for me to concentrate, everything gets blurry and I get pain and a lot of fatigue very quickly.
Sister: That's not a thing, you're just faking it.
Me: I have a formal diagnosis from a licensed optometrist. It's not uncommon for autistic people to have it as well. Also why would I get my college to pay like £200+ for glasses that I don't need, just to be a victim? What do you take me for?
Sister: I still don't believe you.
Sadly, this actually happened.
@@El-mu4tr Gee, that sounds awful!
My condition is pretty similar to yours, actually. Not only I have trouble reading things with a white background, If the text is toi small It gets mire difficult. That's why I either use an amplifier at school ir ask for papers to be printed in a larger size.
Also, I don't have peripheral vision, so I to be a bit unaware of the world around me. This causes me walk slowly and a bit weirdly, and some people make fun of me.
Ps: Sorry for the bad english
I need reading glasses because I'm so far sighted that close up things are blurry, but my glasses are super short sighted so to see far away things I have to take them off, makes sense right? Seems like nobody I know irl seems to understand that when my glasses are off, I cant see things close up and when my glasses are on I cant see things far away
@@beep6185 I am the same actually
I once met somebody in high school that thought people that were color-blind could fix it by wearing glasses I literally had to explain to a senior in high school that that's not how it works
I get this a lot, "You can't be disabled! You have a job!" or "You're too young to have that problem."
If we say we are in pain (and that usually means a lot more then joe public could stand), then we are just moaning/crying wolf. Yet if we say nothing we must be fine and in no pain!
1. [ 1:16 ] It doesn't get you lots of attention
2. [ 1:43 ] You also won't be getting lots of money
3. [ 2:10 ] No team of glamorous doctors will be diagnosing you
4. [ 2:36 ] There will not be a miracle medical cure
5. [ 3:05 ] You won't get the medical or mobility equipment that you need
6. [ 3:41 ] You don't actually get a carer all the time
7. [ 4:14 ] Random people will talk to you
8. [ 4:36 ] People will not talk to you (they'll speak to an able-bodied person instead)
9. [ 4:56 ] The world isn't actually that accessible
10. [ 5:30 ] You still have a voice!
my least favorite assumption people make about disability, in particular chronic pain, is that we're somehow meant to attenuate to it so that 'our normal' which is excruciating and debilitating, becomes just the same as anyone else's normal - and so we're able to function like everyone else, as though we aren't actually disabled.
also, contrary to what so many people want to believe, you cannot simply self-discipline your way out of hereditary disorders!
I had spinal fusion surgery and my consultants had contacted a dietitian to help me put on weight before it. The dietitian only contacted us after I had woken up from the surgery. We had waited for months only for them to be useless and especially condescending when we told them that we literally didn’t need them anymore.
"You just like going places with your dog" yep its why A LOT of money and time was spent training her and ps when you travel with a dog all the time it's like traveling with another person she requires her own bag because food etc.. I love my labrador lifeline but I would rather just not be broken AF and not need her but without her, I will have no advance warning of a cardiac event or low oxygen and geez that is kind of important...... this is kind of timely in my life right now. Love your videos!!
It looks like you DO like going places with your dog, since she helps keep you alive!
Geez. Some people and their stupid comments. 🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️
I would be house bound, without my Kia, blessings for all service dogs.
The best one is when you’re using your wheelchair (there are many reasons someone may need one, fyi. Not being able to walk long distances, easy exhaustion, fall risk, etc) and you get up to transfer to a chair in a restaurant and the waiter goes “oh my gosh, you can walk. You surprised me!” 🤔
I'm so tired of people thinking that I'm going to "get better". It has been many, many years and I have gradually progressed which is obvious so what makes people think I'm going to magically improve? I understand that they don't want this for me but sending me info on a new Dr or medication isn't helpful. I have a good team of Dr's, if there was something new they'd be all over it. There are so many things you just can't imagine - until you are living it. Love your attitude! 👍🤗
And having to prove to all the administrative bodies every year that, no, my chronic issue which has been going on for 22 years now, did not magically vanish since my last application.
@@johannageisel5390 Lord yes! I know they have to be vigilant because of the disability fraud cases but it can be frustrating. 🤦
@@nancypannebaker1357 There are barely any disability fraud cases.
Constantly trying to hide how sick you really are, and working twice as hard as everyone else. In order to avoid ablism and convince my employer I am a valuable employee.
I have a disability, and part of it is a facial deformity, so I guess here are some facial deformities misconceptions lol
cw, ableism, plus some talk of acid attacks
1) no, believe it or not, not everybody with a facial marking is a victim of an acid attack !
2) yes, I'm aware I look different. I've had this for eighteen years, I KNOW
3) no, I actually don't really get all that offended when people stare. obviously there's a difference between looking at someone cause they look different (we all do it!) and just straight up gawping, but in general? I don't care. moving on from that point, I don't actually get too offended if people ask questions about it !
that's all I can think of right now lol
noahsnerves Or they ask “What happened to you?” Hoping for some horror story. Sorry, I was born this way.
@@My_Royal_Life YES !!! like 'oh, I have a genetic condition' 'is that it?' 'uh yes?? What were you EXPECTING'
1:01 While all of those can be true I came because, you uploaded
same
Same
Me too
The classic just because i look okay on the outside, doesnt mean i am not in a lot of pain, putting all my energy to be standing right now, can we please sit down!!!
Ive had a lot of converstations recently of people asking if i am actually disabled.
I might add that it is so painfully hard to get diagnosed. I'm not physically disabled, but I do have autism, and it took endless nagging to get my psychiatrist to even admit that she thinks I might have it. And then getting a legal diagnosis is a nightmare that I can't afford anyways.
On a happier note, love you, Jessica! You always make my day better!
That stack of paperwork you have to fill out is NO JOKE. My stack of paperwork was at least that big.
oh god - and it isn't just once either! i'm lucky that my mum acts as my carer/advocate, particularly with paperwork and phone calls. i'm sorry crazy bureaucrats, but i'm currently on such heavy meds that those signatures probably aren't legally binding.
And they often expect you to get it back to them in 3-5 days, including the time it takes to be mailed. I’m disabled, and not a miracle worker. Let’s all assume this isn’t going to happen.
I can never take a train without someone coming up to me. I've had people ask if they could touch me to bless my arms and legs in the name of God to try and cure me. Awkward!
I love these videos that are practically dripping with sarcasm but still so eloquent 😂😂
I love how your dog is just chilling out in a bunch of shots 😂 She is so cute!
Especially lying on her butt! Lol
I love how you got Claudia to play your carer instead of Clara
Spot on! Although in the US, we only have ourselves to rely upon. Living 30 yrs w autoimmune issues/degenerative spine, I've been accosted several times while using my handicap parking. Name calling and accusations... Bc I don't look like I need one. They have no idea what it took for me to just get out of the house. I just think to myself, Thank God I'm not stupid!! I'll carry my burdens while still having compassion for others! Lovely channel! Keep on keeping on & SHINE❣️🌟Love from Cheyenne, Wyoming USA 🤠
Those 19 steps up to the court building are *so useful * when you're attending a pip tribunal 🙄 like seriously. I'm 33 (not quite a fossil thank you very much) but I feel like I'm giving a medical lecture every time I give a new locum doctor my med history 😐 then theres the usual, but you look fine 🤬 sweetie, even a demon would reject this body . Zero stars , not fit for purpose 🧟♀️
There's the 'Song of Nations' by a Cartoonshow called Animaniacs. I feel like that every time I meet a new doctor. Truth be told I don't get it right always, but to be honest they never realy care. It's more about getting an impression.
And they deliberately send you to an inaccessible place when you go for a Work Capability Assessment, so they can sanction you.
My favorite is the people that tell you that the documented disability you have dose not exists, your doctors and teachers lied to you. You just need to try harder, and take more vitamin D.
Yep had that. The very next day I got a call from my Dr to say 'We think your aorta might be leaking (my dad died of an aortic anurism). Can you get to Stoke hospital now (about 40 miles away) or shall we send you an ambulance!'
Boys will be boys, it's all big pharma selling you drugs, drugging your children to make them sit still is not the right thing to do when you can treat them with this wonderful new diet and essential oils.
except I'm a girl and I need that medication, I'm also over 18 but my ADHD didn't magically turn off on my 18th birthday, there is no cure, there us just coping and treatment.
I love that she did air quotes for "person" and stead of "able bodied" person! Amazing videos.
"Temporarily Non-Disabled".
"I can't imagine what it would be like without the NHS." As an American, I can tell you it's exactly the same, you just might get the police and a lawyer coming to your home to rifle around looking for things of value to take when you can't make your bills. That happened to my mother who was dying in the bedroom at the time, thankfully oblivious to what was going on. Thankfully they didn't get anything worthwhile.
Just thing, all that just to be ignored by doctors and treated as worthless.
Unless you have a visible disability (and sometimes even when you do) people will assume you are faking things and complain about having to accommodate you and if its someone at work/school you unfortunately cant just yell "IM SO SORRY SHARON YOURE RIGHT! IT WAS SO VERY INCONSIDERATE TO HAVE THAT GRAND MAL SEIZURE AND TAKE A FEW DAYS OFF TO RECOVER!! YEAH IT TOTALLY WASNT A BIG DEAL! IM JUST SUCH A BIG BABY" bc you have to remain professional even when others arent
I just want to thank you Jessica! Because of you I pursued hearing aids again and this time they have helped improve my life tremendously
people are always surprised that im constantly in pain. like excruitiating pain. mostly because im very good at acting like im not.
Woow your hair is just amazing today!
+ it's a really great video
I just love this channel!
I love these sketch comedy videos, hilarious! (And very informative)
I feel the same way. I think this kind of presentation is most effective.