Hi everyone I hope you are all well. Im just giving one example of what its like to be questioned about a disability by a total stranger. I hope that together we can help raise awareness of how horrible it feels. Please feel free to share any experiences you may have had. Don't for get that I have turned on community contributions. :) kzread.info_cs_panel?tab=2&c=UCNP1tYcve1MtivJtDjHsO-g

@samanthapalumbo8926

6 жыл бұрын

My university that prides itself in being an accessible gave me a hard time when I wanted to get services because they didn't see a need. I have what is known as the invisible disability and was never really given accommodations before college because I was studious and therefore shouldn't have needed accommodations when I did. They finally gave me the accommodations when I wouldn't let it go and kept talking to them about it. Had to climb the chain of command, but I got what I needed.

@Wheelsnoheels

6 жыл бұрын

Im glad you got what you needed. But I hate these "battles" we always have to face. Its hard work!! xx

@DestinyGPlus3

5 жыл бұрын

you listed charcot Marie tooth!!! so you already know ❤ thank you for mentioning !

I’m a paraplegic wheelchair user who drives. I don’t drive while in my wheelchair. It’s behind me when I drive. As soon as I park in the disabled space, I’ve had people come up and Knock on my window. I’ve even had people motion for me to roll down my window. Um, no. I will never roll down my window for a stranger, especially one that looks angry. I just keep transferring to my chair, and I get my lift out. These people don’t even say anything as they scurry away with a red, embarrassed face once they have realized they just harassed and kind of attacked a disabled person. If they look at me, I give them an over exaggerated “sweet” wave. Leave disabled people alone. Leave strangers alone. It’s not your job to come at people.

@Wheelsnoheels

6 жыл бұрын

hahaha yes i do that too.!!! a really sarcastic smile, wave even a cheeky blow kiss :)

I have Ehlers Danlos and my family still doesn't understand why I can't work full time as a 22 y/o and they keep asking when I'm going to get better. They don't understand I'm really only getting gradually worse as time goes on. I've given up on explaining, if they really wanted to understand they would listen to me the first couple times I explained :/ Thanks for reminding me there are lovely people who do understand

@Wheelsnoheels

6 жыл бұрын

awwww its such a battle sometimes!!! I struggled and still do with people not quite believing you. :( lots of love. xxx

@lundmaguelonne1149

6 жыл бұрын

Hi Sarah :) I don't personally know you, but please believe me, I trust you, and lots of people too. People that aren't sensitized about invisible invisibility, and that's so so bad and heartbreaking, that's why videos like this one are really important. I'm sending you my full support :-*

@minimalzebra

6 жыл бұрын

Sarah i also have elhers danlos syndrome and i know how you feel.

@laniemo7016

6 жыл бұрын

I have cvEDS and get some of the same problems. Hang in there! We’re all here for you. 💕

@SohiTheTinyKittenHuman

6 жыл бұрын

I’m sorry your family doesn’t understand. That’s not right! Hugs.

I get questioned almost everytime I leave the house. I walk most of the time so when I a 25 year old (I look about 17!) use my blue badge. Growing up with a disabled mum I've had people do this my whole life (back when disabled badges were orange!) she is pleased to have gone grey now because she gets less hassle! It is always men, I don't think I've ever ever been questioned by a woman (the odd stare) whereas I've had men demand to see the back of my badge. I've told them they aren't entitled to but that should they wish to they can take down my badge number as it is there for anyone to see. I hate being questioned, I hate having to share my diagnosis or be explicit about my continence just to get access to a toilet despite carrying a radar key, disabled railcard (basically just to show people) etc. Add in how explicit you have to be in forms or in assessments, how much I've had to fight for adaptations at college and uni (constant queries that reasonable adaptations give me an advantage!). I've even had to explain myself IN HOSPITAL because the nurse didn't realise that hEDS doesn't just mean joint hypermobility but also massively impacts how quickly I need a loo! Despite it being on my notes etc. Being questioned and having to constantly provide evidence is the biggest damage to my mental health because it is just exhausting.

@Wheelsnoheels

6 жыл бұрын

thanks for sharing. I can relate. I like the way you handle people looking at your badge. Ill remember that one. xx

@briannakilgannon5912

4 жыл бұрын

EXACTLY why should we prove it just because it dosent stand out to me if you fake it there is something wrong for you to do that. Just dont question these things

@TheMazinoz

Жыл бұрын

"Woke" disability vigilantes are the worst. I've experienced similar, don't even use disabled parking, I have HEDS and now at stage of using a cane or rollator due to pain and fatigue. It's bad enough having to correct medical professionals who know nothing about the multisystem nature of HEDS without having to explain it to morons because you use a cane when grocery shopping!

When I’m able to once a week my mum and I go into town on the bus. I use a power wheelchair out of the house and the comments I’ve had are unbelievable such as “she shouldn’t be able to come out”, “she should have to pay for three seats in that” (my chair reverses into a spot that when not used for wheelchairs or baby buggies can have 3 pull down side seats), “she shouldn’t be able to come on the bus when she’s got one of them (I live 6 miles from town and my chair can do 10 miles tops on a battery charge), plus a hundred other comments (some a lot ruder too). Every time I hear then so do other bus users and I can see they feel embarrassed even though they have done nothing wrong and may whisper something like “ignore them” or “take no notice”. I have previously said something but now I just pretend I haven’t heard but inside it really does hurt me. Is the sight of me in my chair so awful that people have to say such mean things? People really do need to be more tolerant.

@Wheelsnoheels

6 жыл бұрын

awww sweetie thats horrible. :( I would feel hurt too. Did you know Over 80% of disabled people acquired disability later in life. Fewer than 20% were born with disability. So these people never know whats around the corner xxx

@koalafromtomorrow5656

3 жыл бұрын

I see always gave up My set for people in whecllvor of for gilrs I would stand on the boos I knew someone who could walk part time but I asked her I went do you mind explaining why you use a chair when you can walk you don't have to answer if you don't want to and I would wait for them

@TheMazinoz

Жыл бұрын

@@Wheelsnoheels Bring on Karma.

One side of me is paralysed and use an electric wheelchair. But this means I can stand on my good leg and this is how I transfer. I went in a shop and stood to get something from s shelf a woman was so appalled and started shouting at me for faking a disability and asking what makes me disabled. My disability consists of some brain damage which made this very uncomfortable and scary because I can’t defend my self. It made me so scared that I passed out in front of her and ended up in hospital. Just stop questioning and concentrate on your life not others around you!

@Wheelsnoheels

6 жыл бұрын

my goodness me that horrible. xxxx

@stitch_andherhuman1888

6 жыл бұрын

It happens all the time when I’m transferring or something people just don’t understand xxxxx thank you for replying! Your videos have helped me so much ❤️

@karens8633

5 жыл бұрын

Hopefully SHE learned a lesson from that! 🤦‍♀️

@KissesFromCanada

3 жыл бұрын

I hope she at least sent you flowers!😘

@stitch_andherhuman1888

3 жыл бұрын

@@KissesFromCanada I wish 😂

Gem, I don't think most will understand. With my disability, you can't see it. However, they wonder when I'll be better or go back to work? After the 5 back surgeries, a brain aneurysm and pain pump installation ( which people do not understand) I still feel pain. The moraphine doesn't halt all the pain and no I do not get high from it. AND, I DO NOT, sell, give, loan, barter my break-thru medicine. You want pills, go visit your doctor. As we are monitored weekly, and I need them. Thank you for letting me vent. 💕💕💕💕💕🐒🐒🐒🐒💊💊💊💊

@Wheelsnoheels

6 жыл бұрын

awwww. vent away, hopefully people reading this will get even more awareness. xxx

@boofyhalfpint8559

3 жыл бұрын

@Severn Belle Sell them a placebo :)

@TheMazinoz

Жыл бұрын

Some people are just terminally stupid. Glad you are getting some pain relief, here you are treated like a criminal if you want codeine for HEDS. Fortunately now with a doctor who has HEDS! He gets it and am on a pain management plan including opiods. So much better!

The really sad thing is many of those people really think they are helping and doing the right thing. My bro-in-law has an invisible disability, a parking badge and a collection of nasty notes that have been left on his windscreen threatening to bring in the cameras from the evening scandal shows to expose him because those spaces and badges are for people with “real disabilities”. Thankfully he also has a great sense of humour and has left notes for the note leavers challenging them to do it because both he and his cardiologist would love their 15 minutes of fame. That’s why I love your vids Gem, you have such an approachable, welcoming and shareable way of talking about your reality that it must be changing hearts and minds.

@Wheelsnoheels

6 жыл бұрын

thank you for your lovely comment. Your bother in law sounds fun. Im glad he is able to rise above it and turn it round like that. xxx

@KissesFromCanada

3 жыл бұрын

I love collecting nasty notes! They are the best!

@TheMazinoz

Жыл бұрын

@@KissesFromCanada Bet they don't sign them with their name.

Thank you for making this video! I was confronted just last week for using my disabled parking tag. I have multiple sclerosis and experience burning in my feet, muscle spasms in my legs and back, and I lose my balance easily. I don’t use any kind of assistive devices, so my disability is invisible but also very real. It was a soul crushing experience to be yelled at by a stranger for using something I’m medically legally entitled to.

@Wheelsnoheels

6 жыл бұрын

Awwww its horrible isn't it. :( Thank you for sharing. Hold your head high and don't let them get you down. xx

Had a woman pull me out of a disabled seat on a train and begin to try to attack me and take away my cane. A man on the train restrained her and was late to work for me while we waited for the police. And I don’t always need my cane! When my autoimmune disorder is not acting up sometimes my asthma will and I’ll need to sit on the train and since I’m young and look able bodied people stare and I’ve been rudely asked to get out of the seat by people. I usually do then struggle to breath while trying to not fall over on the train. It’s also hard when places only have the option of stairs or a ramp. Stairs are more manageable but only slightly and are still at times a challenge. It’s amazing how many places are not accessible even many doctors offices are not accessible sometimes to wheelchairs or otherwise!

@Wheelsnoheels

6 жыл бұрын

thanks for sharing. My old dentist wasn't accessible. I struggled there for about 5 years, then I was like!!! What am I doing??? So I moved. Thanks for sharing I'm sorry you had/have this treatment. :(

@KissesFromCanada

3 жыл бұрын

I hope you never get out of the seat?!?

@SohiTheTinyKittenHuman

3 жыл бұрын

@@KissesFromCanada well I’m in a wheelchair almost full time now so these days I doubt anyone would dare. Lol

I have a blue badge and had gone to the supermarket with my mum one day, parked in disabled bay and a man saw me and stood and stared, then went to the front of my car and checked for a blue badge and carried on scowling at me! But I'm not as nice as you I shouted to him yes I do have a blue badge so you can stop staring now😂 Im 20 and i think in other people's mind young people can't possibly be disabled. I do use two walking sticks (and a wheelchair for distance or bad days) but people still ask 'what I've done' thinking I've broken my leg or something. I've also been told off twice on a bus and a train by members of the public for sitting in disabled seating, one woman told me 'these seats are for old people'. Also a very close relative of mine had cancer and used a disabled toilet and was told of by a lady for using it because he "wasn't disabled" I was fuming😡 You're right though, even when your disabilitys visible people still question you 😑

@TheMazinoz

Жыл бұрын

During Covid I couldnt' access buses in Brisbane via front door despite having a cane, a brace on my leg and one day a patch on one eye following an eye injection as well. [Yes, in the eyeball, not really able to drive! or negotiate steps]. People with shopping carts and prams could use the "accessible door".

You did us proud with this video. I love that you inform people about invisible disabilities. Thank you so much for all your hard work💜.

I live in America (where we can train our own service dogs) and am currently training a service dog for myself and everyone asks me if I'm training him for a program and if its hard to give them up and it gets so old and I know this is something loads of handlers get. Just the other day I was at the theater and as I was leaving some old man asked me if my dog was young. I figured he asked because Draco looked like a nine month old puppy, or perhaps because the way he backed out from under the seat was mildly dysfunctional and far from graceful, but when I said yes he followed up with "yeah you don't really look like you need much assistance." I just smiled coldly at him and responded "He's for me." and he stopped mid sentence and just stared at me (probably trying to figure out what was wrong with me). What he couldn't see was that I'd had a panic attack before the show started from the crowds, my right leg had given out walking down the stairs and still was barely supporting my weight, my hearing was coming and going as it always does in all of its ringing glory, and my blood sugar was moments from starting to crash. I have 12 diagnoses with two more being investigated, none of them are "visible," though I did once see a great quote "my disability isn't invisible, people refuse to look at it" which I think is incredibly true for many invisible illnesses.

@Wheelsnoheels

6 жыл бұрын

wow that quote is powerful. Thats for sharing your story. :)

I have a disability, it was invisible, but recently I started using a crutch to get around, since my invisible disability became visible people started being a bit more considerate, giving me a seat, holding doors open for me, doing favours at work etc. made a real difference

I get exactly how you felt about the idiot I had an incident with a woman who told me her grandmother needed the space more than I did ,I was on2crutvhes her grandmother almost shot out of the car like a rat up a bloody drainpipe and they continued to eyeball me in the shops on this shop centre x

@Wheelsnoheels

6 жыл бұрын

Disabled parking is such an issue sometimes. :(

@ishyreddi13

5 жыл бұрын

Rat up a bloody drainpipe 😂

@KimonoSkunk

3 жыл бұрын

I also walk with forearm crutches and will be getting a wheelchair soon. Now in America, we do have placards that we hang on the rear mirror, but there is a HUGE a amount of fraud that goes on where people use their parents or grandparents placard for the handicap spaces. When someone is issued a placard, they are also issued a card with the placard number and their name, showing the card can only be used in a handicap space when the person it is issued to is in the car as well. I often wish I could ask these people where the person is who the card was issued and just get blank stares, or None of your business. But I then show them my placard and ID then they run into the store as fast as they can. I wish I could write as many tickets as I see for the fraud going on. Cheers, Gryphon

Omg! Gem, I’m literally in tears. It’s so true and we can’t judge people because we don’t know what they’re going through. I will always support you no matter what. ❤️

@Wheelsnoheels

6 жыл бұрын

thank you lovely. Its fine. I hope this video will help raise awareness and make people think before they speak. x Lots of love. xxx

I have scoliosis with spinal fusion T2-L3 and although you wouldn't know it, I find that I have a standing limit and a walking limit compared to other people my age (22) as well as finding some activities difficult. I do find that I run out of spoons, whether energy or social, and I often need to sit down or rest or take public transport more than others. Then if I overdo it, the next day I can't do as much. Luckily, uni is very accomodating and I have extra time, proper seating and lecturers have to have notes incase I can't make it. Looking at me, you wouldn't know and although some days I'm fine, other days I feel impaired and frustrated at what I can't do.

@Wheelsnoheels

6 жыл бұрын

I feel the same sometimes and get upset :(

Every time I take Uber, the drivers would be asking me if I’m going to work, and I’m just going to the grocery store (I take Uber or Lyft most of the time cause taking the bus and dealing with a bunch of people takes a lot out of me). One actually kept asking why I wouldn’t work at Dunkin Donuts or something....took everything I had not to get triggered.

I have episodic dizziness and chronic fatigue. I use the disabled parking spot I need the extra space to get out of the car and the closer parking spot. I have a wheelchair, but usually I can be walk with someone supporting me like you would guide a blind person. I have to walk incredibly slowly. I get all kinds of stares. some days I can walk fairly normally (I still can't jog or speed walk) and other days I need the wheelchair. I am constantly being questioned. When I am in the wheelchair, I will move my legs around and if I just need to adjust the position a little bit I will use my foot. People will come up and ask "oh are you just trying out the wheelchair?" "Is that your friend's wheelchair?" and I have to explain that even though my legs work, I still can't walk. I am in highschool, and the line for the bathroom goes all the way out the door and around the corner. The disabled stall is always taken and I can't skip the line because I look fine. I have very mild incontinence because I am bedridden several days a week, so I can't wait in line. Also someone thought it would be a great prank to cover the walls and toilet of the disabled stall in sharpie.

@Wheelsnoheels

6 жыл бұрын

Thanks for sharing. Is there a way you could get some sort of pass to the disabled toilet? Or suggest that it be kept locked, and the only people with a medical reason to use the toilet have the key? xx

I was in a major car accident and I have POTS which is a vascular/autonomic dysfunction condition. I pass out very easily with exertion. I wear compression stockings, an abdominal binder. All under my clothes. I have a blue parking badge for 5 years and I get stared at all the time. I also feel bad using the disabled shower or stool at the YMCA but I really need it.

People really should mind their own bees wax

I have Ehlers Danlos Syndrome, rheumatoid arthritis and spinal stenosis. I have a blue badge but I work full time, I don't "look" disabled and I try my hardest to lead the fullest life I can despite the constant pain and restricted mobility. I am subject to constant questions, judgments and assumptions. Even people who know about my diagnoses forget sometimes that I do have different limits of what I can manage compared them. I guess sometimes I'm too good at faking "normal"! Haha.

Well said! I have a visible disability (Scoliosis) but people forget that I’m in constant pain because I work hard to lead a normal life. But Scoliosis can cause other problems that are invisible like bladder and bowel problems. It’s in those moments I need a disabled loo!

@Wheelsnoheels

6 жыл бұрын

Thank you. Yes even when there is a visible disability there are aloof of other things that could be going on too, that people can be unaware of. xx

@bellabo8166

4 жыл бұрын

Exactly. In my case my scoliosis is not visible but it causes a lot of pain for me and other issues. Me for example I can't stand for a long time so I will sit down after a while. But people often don't allow me to sit down because I look able bodied and I'm young. They seriously will take the chairs out or will put not enough of them in the room because they think I'm making up and I'm lazy and too fat. For a time I didn't have any trouble with sitting on the floor but scoliosis caused other issues like a hip issue for me which on bad days won't allow me to sleep. I can't walk for long, stand for long. While sitting, there are only a few positions that won't cause pain but they are slightly uncomfortable or not acceptable in every situation. So either you let me sit like it's the most painless or you let me move around/walk when I feel pain incoming. But nobody can see those two main physical issues. I got this hip issue for 4 years now but still the doctors are telling me that I'm making up. I was a quite active person, started to love the life and going out with friends. I wouldn't make up pain that keeps me away from what I loved to do. I stopped going out because I don't know if I can bear to stand or walk all the time, because their plans can change and all of a sudden a cosy movie night can become a walk through a town and because I'm tired of explaining things over and over again. But for not painting everything black I've also meet a few people who are very understandable and with whom it's a bit easier to cope with an illness that is known and diagnosed (scoliosis) and with an illness that is unknown (hip). It's hard.. and I'm really happy that you made a video like this.

People do this all the time to me! I have a lot of chronic illnesses that leave me with a lot of pain and fatigue I use a walking stick but whenever we park in a disabled car park me and my husband always get glared at! I’ve had people shout too and it’s so scary and upsetting when strangers ask what I’ve done to myself like I must’ve twisted an ankle or something and I do not want to discuss my medical history with total strangers! This is why I try to talk about disability on my channel too so hopefully people will stop assuming that only old people are allowed to be disabled! Thank you for this video xx

Thank you so much for this video Gem! My disability has mostly been invisible but the last few years that’s changed and now either use a wheelchair, a rollator or at the very least a stick. The difference in the way people treat me now is very obvious, sadly. No one questions the wheelchair once they see it. I don’t understand why people want our already difficult lives to be MORE visibly difficult. Why? It makes no sense. No one questions ability...no one says why are you only running at that speed, your legs clearly work therefore you should able to run like an Olympian!! It’s taken me years to stop pushing myself to the limit, and recently over my limit, just so no one thought I was faking it. It’s cruel and unnecessary. Now my disability is very visible. I have FND with seizures and extreme difficulty coordinating my legs so walking is like watching a puppet having its strings pulled all over the place. It’s exhausting trying to walk, and can trigger a seizure, after which I can barely stand, can’t talk or do much at all for at least the rest of the day and often into the next. So now push myself too hard, I sit down in my chair when I need to and it helps. I wish the world wasn’t the way it is. I think that anyone in charge I making a workplace or shop or restaurant etc accessible should live life in a wheelchair for 3 days , only then might they understand the needs of someone less able and it might just help.

Yes been there many times. I have been verbally abused, mocked, nearly run off the road, physically assaulted, stared at. I use a mobility scooter because amongst other things I have chronic fatigue. I can walk very small distances but then I am so exhausted to do anything. E en though I have a blue badge and a sticker on the back of the car saying please leave space for my scooter and hoist people still park within inches of the back of the car.

@Wheelsnoheels

6 жыл бұрын

Thanks for sharing. I don't bother with a sticker on the back of my car, as I know it will only upset me as people just don't care :(

As someone with some newly diagnosed invisible disabilities... thank you ❤

Fibromyalgia, spinal stenosis, neuropathy in my foot makes walking slow and painful (which people don't get. They get agitated that I can't keep up or how I have to sit down now and then when out cause it feels like being stabbed in the foot with hot metal and I walk with a limp), anxiety, panic attacks, bipolar disorder, degenerative disc disease, (not a disability but just diagnosed with PCOS and dysfunctional uterine bleeding (I know TMI) as well) which makes my anxiety and depression so much worse. I'm new to your channel. Really glad I found it.

@Wheelsnoheels

6 жыл бұрын

Hi welcome to the community. Im glad you found it. Thank you for sharing. xxx

I have a long list of disabilities that are physical, mental, and cognitive. Two of the most debilitating ones are Ankylosing Spondylitis and Asthma. When people see me with my cane, they ask "what happened?" Nothing happened. This will never go away. One person asked why I am in a wheelchair some days and use a cane other days. Many people do not understand that disabilities may fluctuate. People also ask when I'll get better, but getting better doesn't mean that the condition is gone. Even if I get well enough to be considered "better", I'll be afraid to go anywhere without a cane in my bag for if I fall down, have a spasm, or have a sudden joint flair up and can't walk well enough. That's because it won't ever disappear. It will always there. Today, I asked for water from the tap at a food place, because the filtered water machine takes a long time and it hurts to stand that long, in an awkward position, holding three things in one hand. They said no, I can do that myself. Afterwards, an employee apologized and told me that it was because the water isn't filtered and they were just trying to make sure that I get better water. I know what kind of water I am asking for. It's water that doesn't hurt my joints as much. Another thing I wanted to mention was how in class, another student sprayed a bunch of perfume on. I asked if it was perfume or not. She looked at me with a strange face and said "yes". I moved away from her and said that I had asthma. She said "I have asthma too". A couple minutes later I explained how asthma isn't the same for everyone. Does her asthma prevent her from sleeping? Make her unable to leave her home for days? I don't know if it does or not, but it does do so to me. Asthma can be life threatening. For many, it may just cause slight problems. They don't understand the severity of asthma, because of how manageable it may be for others. Thank you for the video :)

@Wheelsnoheels

6 жыл бұрын

thank you for your comments :)

@TheMazinoz

Жыл бұрын

I have physical disablility and get migraines and hayfever. People don't realise their perfume can set off migraines, asthma, hayfever. Not a fan of smokers either.

Omg what a story. I’m not in a wheelchair and I got that coming out of a disabled loo. Ok I ONLY use disabled loos when the toilets are so damn small and due to a panic attacks and co ordination. You feel you have to go into every damn detail about your disability and trust me. I’m not not scared of saying it. My dad calls me the Rottweiler lol

I think you must be one of the most amazing people anyone could share with thanks for the work

I just looked at a picture of when I was still walking and I cried my eyes out whilst remembering my struggles. I watched this as a distraction . My friend, who has seen my health deteriorate, is still expecting me to walk. The thing is, although he has listened, he has not shared in the medical condition, the struggle the tears, the anger, the heartbreak, the pain, the psychological adjustment we all have to make before acceptance strikes. It can be difficult for friends/family to psychologically grasp our condition. Not everyone has that capacity of understanding. And now, my feet have turned bad and my GP has been referring me for amputation. Whilst I can cope with this my friend keeps saying I will never walk again. We already have a hard enough life without having to psychologically help friends/family. It feels like that is what I have to do.

It's amazing the lengths some men will go to just to talk to you, Mrs Hubbard. (UK)

I have a long list of disabilities and impairments. Several are in a progression mode right now. It is hard for me to adjust and accept some of the changes, but even harder for family and friends. I recently was prescribed a walker for days when the nerves in my lower extremities go wonky on me. I don’t have a handicap tag, and really don’t need one most of the time. I need to keep walking, and often park further out on nice days to avoid crowded areas and get the exercise. The other day, I was parked out a ways from the door because there was nothing close. It was a “walker” kind of day. I wish I could have captured on film some of the looks I got as I crossed most of the lot using my walker. They were priceless!!! I have the walker to help me walk without stumbling or falling, not so I can get sympathy or a parking tag. On days when I can’t walk, with or without my cane or walker, i really can’t even go out on my own. Someday, my diseases will progress to the point where i need a tag. Until then, i want to leave the blue spaces for those who really need them. 💖👣💖👣💖

I'm one of the autism people and I had to sorta use a wheelchair only because I had a bad accident on my which I had to have stitches but I had to not use the knee not very much in movement and I hate the fact that people are ignorant I just wish this world was better as I born with Autism and I feel daily troubles with it and I just stresses me out

@Ghunteriri

5 жыл бұрын

Luke N Train & bus production I have Asperger’s Syndrome Anxiety disorder ptsd also epilepsy

I am sorry for your experience I love your scence of humour

Gem only thouse who had a surgery or haved serious healty issues understand you and feel with you ,and are here for you ,the rest of them are here to make fun of you and to ask questions what makes you sad .Please keep you're had up and never forget cause you are a special girl who have a golden heart .Be blessed forever and your loved ones too .xo

@Wheelsnoheels

6 жыл бұрын

Thank you. x

Part time powerchair user here. I don’t challenge anyone using the disabled loo that don’t look disabled as I realise they may have a hidden disability. I trend yo find they look sheepish and apologetic if they’re not disabled. I just smile sweetly and go in the loo hoping i can hang on long enough to get sat down. Love your videos Gem. So insightful.

Before my crash I was a lifeguard fitness instructor and bodybuilder. I wasn’t small, but 20years on I am overweight but am limited on the exercise I can do. What gets me are those strangers who tell me that if I lost weight I would not need the chair. When I use a scooter I am told I am lazy. I get so depressed when I hear it. Even from friends.

@TheMazinoz

Жыл бұрын

That's one reason I use a two wheel elec Razor scooter or a lightweight foldable manual one. You get comments about these as well some favourable some not. Can't win.

Thank you so much for making this video!! I had an invisible disability(PTSD) until recently when I've had to start using a cane. I have a service dog, and I went to the store ONCE without him being vested (which is 100% legal) because I just needed hamburger meat and didn't want to bend over and get him "dressed." It can take several minutes for me to recover from the dizziness bending over causes and it was late, so i didn't expect it to bother anyone. A lady comes up and is SO rude. 1st she simply asked if he was a trained service dog, and I said he was. She responded that he needed to be vested and I said no, he doesn't, it's legal not to. And she just went on and on about her opinion about how service dogs should always always be vested. Umm.. You're not the one who has to take him everywhere and he's on perfect behavior, so it doesn't effect you. This was also a fellow customer, not an employee.

@Wheelsnoheels

6 жыл бұрын

Ugh what a nosy so and so. Thank you for sharing. But its when things like this happen it makes you feel so violated and shaky and angry. I don't know about you but i HATE confrontation. :(

@TheMazinoz

Жыл бұрын

Weird, all my bad experiences have been with other customers too. Staff know better than to do these things.

Thank you so much for your videos. I felt incredibly alone like I was the only one that understood what I feel like until I found your videos. It has been such a huge help. I am recently disabled. I got two covid shots and ended up with severe Rheumatoid Arthritis to the point that I require an electric wheelchair. I don't have a lot of experience with this, but some family members have taken to saying it's all in my head and I'm just lazy because apparently all I do is sit around all day. People gawk at me when I walk because I can't really walk so I waddle and take baby steps while wincing from the pain. I hate when people gawk at me. I want a shirt that says "take a picture, it lasts longer" because that's what I want to say to them when they're looking at me like a side show attraction. I'm always being told that I need to get up and walk, but I physically can't do it anymore. To make the situation more infuriating, I can hardly use my arms either so I can't do a lot of things for myself. My in laws think that I'm using my husband as a means to be lazier than ever. It's difficult to cope with, but your videos have helped me to see that I'm not alone and that this happens to others in a similar situation. Thank you so so so much. I hope you have an amazing day filled with life's most precious surprises.

Oh my days love this video, everything you said I’ve had. It’s horrible I was told to loose weight and then I won’t be in a wheelchair anymore grrrrrrrrrr. Thank you for this video 😘😘😘🙌🏻🙏

I have congenital myopathy and on a number of occasions i have been question by my own family as to why i use my powerchair and not walk and when i tell them i have no choice otherwise i am constantly collapsing on the floor due to the pain. They still call me a liar i try to explain but they dont understand what its like going from having full mobility to loosing it slowly due to my muscles wasting away.

@Wheelsnoheels

6 жыл бұрын

So sad to hear that its hard to explain to your own family. xx

thank you, thank you. As combat veteran with PTSD and a TBI and diminished lung capacity from burn pit exposure, I have lived with the challenge of “invisible disabilities” in society for years, and can totally relate. In fact it literally turned me into a shut-in / recluse, as is quite often the case. Now that I’m “visibly” disabled from a Trimalleolar fracture and a L4 injury, and in a wheelchair, I’m somehow more accepted and accommodated, or at least tolerated. I’m really conflicted, because I find myself feeling motivated to go out and try all the social situations I’ve been avoiding due to my invisible disabilities, I know the chair is empowering, but I never expected this. There are lot to unpack here, luckily I’ve got my weekly session with my psychologist Thursday !

as someone that suffers greatly under my fibromyalgi and many of its side joys, i have no energy i used to be a show team gymnast with all the muscles that comes with always being the bottom, thise days there all gone and i have problems lifting even lighter things, and it shows i need help doing my shopping so my mom comes by ones a week and we go to the store, i walk slow i often limp i know it doesn't help but it feels like it helps i dress as best i can but when even thing hurts just putting on a t-shirt and some comfy sweat pants can be a hefty spoon eating chore, so im slow im often limping and not eksakly dressed like you (or atleast i) would ekspect a 40 yo man to dress at 1o'clock buying groseryes, but i have still eksperienced growen up people men and women pushing me aside commenting i was in there way and instead of standing around where they where walking i should get a job, the people in the store knowes me and one time when a man was soo rude one of the shop employees couldn't keep her mouth shut he's only reply was "if i wasn't good for anything i should stop waisting the states money and his air and just go **** ** ****" unfortunately, some people will never learn compassion, and some will still see it as your getting more from the state than they are, or your allowed to park closer to the door or use the special toilet never looking at the reason you might need a little more help to function than a normal functioning person. many of us would give an arm and a leg (bad pont ?? sry) to be aboul just get out of bed without the extra 20 steps, but many people don't think about that until it happens to them. i guess what im trying to say that with time most of us learn to ignore the idiots and appreciate the kind people around us :)

My mum is disabled and has a blue badge, (also I have chronic fatigue syndrome and sometimes going into a disabled toilet is helpful but I don’t have a badge so sometimes feel bad, so thank you for including this!). My local supermarket disabled bays are CONSTANTLY in use by people without badges, especially at night, and it winds me right up. A few weeks ago we pulled in late at night and we had to park quite far away from the door because there were cars filling up most of the disabled bays. As I was walking past all these cars without badges in I came across the one closest to the front door. A lady with 2 kids was getting in, as I looked into her windscreen she started shouting at me and asking what I was looking at, we ended up “sharing some words”. She was shouting at me saying it wasn’t fair for me to criticise her for parking there and how did I know she wasn’t disabled just because she didn’t look it. But in my opinion, if you don’t have a blue badge, you don’t park in the bay. What’s your thoughts on this? If it was in a town centre there’s no way she’d get away with it and I never once said she wasn’t disabled, she shouted at me and I literally just said that disabled or not she can’t park there without a badge. I have to remind myself sometimes that I can’t solve the worlds wrongly parked cars in disabled bay problems but it’s so hard! Watching my mum struggle while cars without badges take her place just isn’t fair to me. Would love to hear your thoughts! I think this was a really good video☺️

@Wheelsnoheels

6 жыл бұрын

Ooo yes this is interesting. technically In a private car park (like supermarkets) there is no enforcement (unless stated) Like my Tesco. So technically anyone can actually park in the disabled bays w/o getting a ticket. But morally its wrong!!! IMO Unless you have a badge you shouldn't park there. But you never know whats going on in peoples lives. She may be undergoing treatment and be in the process of applying for a disabled badge. she may have been waiting for some one with a disability. You just don't know. I know I would (and do) feel the same as you. The spaces usually say "reserved for DISABLED BADGE holders only!!" You are right in town with wardens she would get a ticket!

@LetsWatchTheSunset

6 жыл бұрын

Wheelsnoheels - Gem Hubbard Yes! My mum doesn’t ‘look’ disabled (which is an awful term) but is, so I’d never assume anything of anyone else, but sometimes you just sit and watch someone pull up, run in and come back out and you know it’s because they won’t get caught and it really makes me mad! Definitely think more people in the world should not assume but always consider other needs of people before themselves. Think your videos are excellent at showing how life is with a disability, keep making them please!☺️💪🏼

Strong...beautiful...amazing...another superb bit of work...honored to be on your subs list. ♥

People parking incorrectly in/ across handicap spots is one of my biggest pet peeves since getting my chair. Especially when they look at you ( parked correctly) w placard and wheelchair like ur in the wrong 🤬

I experienced this today, except it was my aunt instead of me this time. We went out to eat and she got kinda tipsy, and the couple who was at the table next to us kept staring. Well she went to put something in the car at the same time they left, and one of them said "she's not disabled, she's just drunk!" despite her having a disabled parking pass and everything. People are just so stupid tbh

@Wheelsnoheels

6 жыл бұрын

Ugh people are so ignorant. x

Thank you so much for making this video! Honestly, I was nervous to watch it and almost didn’t but you did a really great job shedding light on this. I really wish people would stop playing disability police because you can just literally never tell! However foolish and ashamed they would feel for wrongly accusing someone of not needing an accommodation, it feels immeasurably more soul-crushing for us *all the time* to not be believed. I wish the public and doctors would think about that because it gets in the way of access and treatment and many of us develop PTSD over time from our needs and suffering being dismissed, especially by those who have the sole power to help us. I often get watched when parking in an accessible spot and I even hate taking out my wheelchair in those moments. There’s a little satisfaction in whipping out the chair and silently going, “See? Not faking! Move along!” But mostly I feel uncomfortable because what if I didn’t use my wheelchair that day and what about when I was ill and didn’t yet have a wheelchair or anything tipping people off to my disability? And all the people who are really disabled/sick/in pain who don’t need or have a mobility device or anything but who need accommodations like that nearby parking spot anyway? I’ve been stared at a lot. And even IN my wheelchair, I swear people struggle to believe that I actually really need it because I’m not paralyzed and apparently I “look healthy.” Even people who’ve known me for years, I can see it in their faces and body language and tone and words that they’re still questioning my disability and it is so hurtful and isolating to deal with, on top of the illness itself and all the necessary and unnecessary bs that comes along with it.

Thank you for making this video. I have somewhere between a disability to a invisible disability... It's not obvious on the first look... I don't have a wheelchair for example but I do have a blue badge... The looks I get are horrendous!

@Wheelsnoheels

6 жыл бұрын

Your welcome. I hope this video will help stop these looks, I know what its like, and its not nice. xxx

I have actually had the opposite problem. I have Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia and breathing difficulties, none of which are visible. Where I live, it us common to have both standard disable parking spot and what are called van accessible which means there is extra space to lower a ramp out the side door of a van. As of yet, I do not need a wheelchair. I just can not walk long distances. I need to park close to a store and then use my walker or the store carriage to get around. So if I pull into a parking lot and see that the only disable spot left is a van spot, but there is a non disable spot close to the door, I will always choose to leave the van spot for someone who needs the extra space. I have gotten dirty looks and heard under the breath comments about "stealing" close spots from "normal" people. The one I have also experienced is the disabled bathroom. In many places, I need the handrails to get up. This started when I was still young. I would get looks from people (rarely anyone in a wheelchair, usually just cranky older women) because I was using the disabled bathroom. Interestingly enough once I had a toddler with me, no one cared that I was using it. So apparently, it is ok to need extra space while in the bathroom for a toddler but it is not ok to be younger with non visible disability.

Yes. I have a mostly invisible disability. I use a mobility aid SOMETIMES And I get questioned either way. If in not using it I get questions like "you shouldn't be parked there?" "Which of you is handicapped?" But f I do use it I get questions of "what's with the wheelchair?" Like I . Don't. Know. You. The worst is honestly when ppl can't accept I don't need help or glare at me when I park my mobility scooter out of the way and then stand up like if I feel like walking I'm gonna walk

I feel questioned nearly everyday. I suffer from Major Depression disorder, Generalized Anxiety disorder and Social Anxiety. It is very difficult to go to class (I'm in college) and not feel paranoid. Lately it's been especially bad as my meds are not right and I'm having a hard time finding a psychiatrist I like who understands my needs. Since you cannot SEE my "disabilities", most would believe I'm perfectly normal, just weird and anti-social. I'm not "anti-social" by choice though, my social anxiety is responsible for my difficulty to make friends and hang out with people outside of class. It gets very difficult as I'm sometimes uncomfortable explaining to others that I take medication, that it isn't working right now, and that is why I need extra help with things. My teachers, God love them, understand my struggle and have been very helpful through this difficult time in my life. But I still cannot help feeling paranoid that other students think I'm making excuses. I've rambled a bit but that's ok. I actually plan on doing a lot over the summer to raise awareness for Mental Illness and help turn the stigma on its end. You may not see my struggle but that doesn't mean it is invalid.

@Wheelsnoheels

6 жыл бұрын

Thank you for your comments. I really hope that things settle down and you can find some stability with meds. have you seen this video? kzread.info/dash/bejne/n4x_paZ9hJmnoLg.html I show what being paralysed could feel like. A lot of people in the comments have said that its a similar thing to mental illness. It might help your friends understand your difficulties. xxx

@butterflynerd0078

6 жыл бұрын

TheDragonNinjaLord I have a similar experience to you. Although meds and therapy did help me some, they did not completely solve the issue. I got a dog and trained her to be my service animal; i wonder if that would be an option to you

@ishyreddi13

5 жыл бұрын

I constantly have on my earbuds when I’m out and at the grocery store. Any unnecessary noise throws me off and gets me very agitated. I too have major depression and ADHD. Not to mention I’m on the autistic spectrum. My anxiety / panic attacks would sometimes go through the roof!!

@brittanyraulerson5112

3 жыл бұрын

I know this is 2 years late but I have a mental/physical disorder. A condition called Nonepileptic Seizure Disorder. Basically I have seizures due to emotional/psychological triggers and some of them are physical as well (such as heat or sleep deprivation). People do not think twice about bringing their opinions in "control your stress" "just get counseling". I am in therapy (to learn to live with my way of life) but the STIGMA is crazy. I was told last week that I will be wheelchair bound for the next year or so because I am a MAJOR fall risk and am pregnant. People don't see that my seizures have already caused the loss of a child just an able-looking girl who can if needed stand and walk sitting in a wheelchair.

I have autism and I wear headphones when I am out in public, because I get triggered by loud noises and a lot of people. But people assume that I’m just antisocial, which I’m not, I’m just protective of myself.

Oh, you remind me of me. My husband has almost been attacked for parking in the accessible parking spots as well... and clearly, my wheelchair was in the trunk (in our SUV, therefore visible). When we struggle to find parking, he drops me off at the front of the store, so I can quickly hop into a motorised cart, because I can't walk the entire distance to make it when he has to park in spots further away. Some days, I can't even walk from the accessible parking spots to the store's motorised carts or wheelchairs.

I have fibromyalgia which is usually a very invisible disability. Not only that but I am not the "typical" person affected by this disease. It usually affects older women and I am a younger man. When I was first diagnosed I really expected to get a lot of looks or comments when I parked in the handicap spots. But, so far I have not had any. Here in Texas we have a law that gives significantly disabled veterans special license plates that allows us to park in handicap spots without a handicap placard or license plate. But unless you know that the plates that start with DV mean disabled veteran it looks like that vehicle isn't allowed to park there. Even with this I have not had any negative experiences. I have been looked at strangely when using a mobility scooter in the store but I think that most people here in America are understanding of invisible disabilities. This may be due to our large veteran population but that is a total guess. Maybe I am just really lucky or maybe I don't see the looks because I am used to looks because I wear a kilt and Z-Coil shoes and am used to it.

@TheMazinoz

Жыл бұрын

America also has the ADA law. I wish they would make this sort of harassment and discrimination illegal here in Australia and other places.

I have Tourette syndrome and use the disabled toilets sometimes (even when I'm not otherwise using a mobility aid) because toilets in general are triggering and I need space and something to hold onto or I might fall or hit stuff around me.

“Justifying ourselves.” pretty much sums it up and frankly it wares me down 😞

Unfortunately we live in a world where people don’t understand what they can’t see!!!

Love you Gem. My first experience with this ‘invisible violation’: I was coming home from 3 MONTHS in hospital with my premature newborn baby. I wanted a Starbucks, and the only parking spot open was the handicapped one, so, sitting in the back of my mom’s car, I told her to go ahead and park there. So my mom popped out and went to grab me a coffee. Well, before the car door was shut, this nasty woman sitting with her husband at a bistro set on the sidewalk accosted my sweet mum as she crossed the street. Well, it took me a while, but I shuffled up to the middle of the car and dug through the console. I dug around until I found the temporary wheelchair parking sign we had. Then I rolled down the window and waved the sign at the lady, yelling ‘is this good enough for you?’. The lady was SHOCKED. She didn’t see me in the car, and she certainly wasn’t expecting to see the parking sign! 😊. My mum walked back with coffee. I’m pretty sure there was a tiny smirk on the husbands face. Bet she never tries that again!🤣🤞😉. And now, my healthy baby daughter is 10...and I have MS, and a blue badge...so I sure showed that lady🤣🤣🤣😉

Hi everyone hope you are all doing well. Thank you for making this video it is so interesting to know that there are so many people with invisible disabilities and illnesses. I have quite a few medical problem I think there disabilities like a brain tumor in my left ventricle, difficult intubation, dextrocardia, hydrocephalus, tarsal coalition in both of my feet and I used to have spina bifida. So yea my life has been interesting and I was diagnosed with depression in the age of 12. But for the people who are struggling out there please stay strong and know that you are all amazing.

I have autism, anxiety, ADHD, arthritis, uncontrollable asthma, and hearing loss plus when I was young I broke my back so I have mobility issues, so I've had lots of stories I can't pick one but most of them are bad included someone taking my crutches because "you don't need them nothing's broken" I also don't need them every day in my worst days I have to use them and someday I feel more Secure with them but like I said I don't always need them but there are days when I even need my wheelchair.its so annoying and it makes me sad and super anxious. Thanks for letting me share this story

Thank you

Before I developed a disability that required me to use a walking stick, I was using the disabled toilets because I’m trans and I didn’t feel safe in either toilets, but especially the Men’s. Thankfully, I’m quite quick in the toilet (I usually don’t take longer than a minute and a half) so I wouldn’t have to worry about making someone else wait a long time. But now I use a walking stick so I feel like I don’t have to worry about using the disabled toilets and someone question me (a worker in St John’s told me to just use the men’s toilets when I was asking if he had a key for the disabled toilets, and I didn’t have my pass to get past the barriers in Central. This was months ago now, and I only just got my walking stick a week ago). I am also disabled beyond just the walking stick stuff, I just didn’t feel like those disabilities justified me personally using the disabled toilets (but they are valid if someone else uses the disabled toilets because of them) Edit: I have a tic disorder, which me and my doctor both think is Tourette’s, as well as the possible chronic illness I may have developed. I have a drop tic so the disabled toilets helped if I was having a bad drop tic day and I needed something to help me get up. My mum (technically adopted/step mother before anyone asks) is also disabled, having basically every spinal issue in the book + a couple other chronic illnesses. Our bathroom in our new house has disability accessible pole thingies on the wall next to the toilet and the walls in the walk-in shower, which have really helped me more than I thought they would.

Emailed you before and said about my mental illness but what I didn’t meantion was people say it’s just an excuse and it’s not real and give me such a hard time just because it a mental illness not a physical illness ugh 😑

@Wheelsnoheels

6 жыл бұрын

Well they are real, and just as debilitating. xxx

@honor9968

6 жыл бұрын

And I am trying to get a assistant dog but I have to pay lodes to make it easier to get one when a wheelchair bound or physically ill doesn’t have to pay People I need one and I don’t have the kind of money to pay that

Thank you for this video I have only recently found your page and I'm glad I did. I have idiopathic intracranial hypertension, postural orthostatic tachycardia syndrome and lipoedema so I am in constant pain. I have been most recently questioned about my disabilities and it leave me angry more than anything and then I feel depressed it's not fair

I guess because of my age, i tend to, yes, get ticked off, but at the same time just ignore these idiots. Not going to let them ruin my day. I know what you are talking about but again, learned to ignore. Doesnt mean i wont attack if neccessary.

Fabulous quite simply thankyou

I have ME/CFS, and while I can walk (and some days can walk fairly well!), I don't have the stamina/coordination to walk long distances. Disabled parking and a transport chair (insurance is not willing to help with a wheelchair, which suuuucks) make it easier, but the LOOKS I get for using them are sometimes unreal! I'm not old, and I'm plus-sized....so obviously that means I'm a lazy fatass, and people have no problem staring openly at me for it. It's really hurtful sometimes, but I do my best to stare back at them....or rile up their kids if I can :) :) That usually distracts them!

@Wheelsnoheels

6 жыл бұрын

awwww sorry that happens that must be hard. Hopefully this video will help raise awareness. Please feel free to share the link on your socials. x

Thank you for saying this. I have depression, social anxiety disorder, OCD, PCOS, IBS and am going through diagnostic processes currently for autism and endometriosis. I have a walking stick due to my chronic pain that radiates down to my legs a lot and affects my ability to walk long distances. However, I'm so terrified to use it when I need it outside bc of the scrutiny people with invisible disabilites face. In the past year or so, I've been coming to terms with calling myself disabled and it's been really hard but I need to admit to myself that I need extra accommodations. Getting referred to the Integrated Autism Service here in Wales has really helped me cut myself some slack and realise I have limitations and that's OK. This summer, I've been really ill with PCOS and possible endometriosis and am having to use my stick more and more. The other day, I had to get my eyes tested and order new glasses lenses and the opticians I go to, I have been going there for almost a full decade, they have watched me grow up and I had to take the stick there for the first time and I was so terrified of their reactions, even though they're lovely people. I think I've just heard too many horror stories. I grew up with an auntie who needed a mobility scooter whenever she went out due to endometriosis pain, she was mostly bedridden even, and yet, I still feel bad for needing a stick??? It's so stupid. I shouldn't feel bad. I've been diagnosed with depression, social anxiety and IBS for several years, PCOS for 3, and yet only in the last year, have I started to call myself disabled. Even though I've had limitations practically my whole life. Facing the possibility of an autism diagnosis has helped me a lot bc autism is seen as a "legit disability" in society. I can't deny that I am disabled anymore and I am slowly accepting that fact. ❤️

@TheMazinoz

Жыл бұрын

Yes, it can be hard to come to grips with. Then I questioned whether it was a "handicap" or a "disability" or chronic illness. Sickness or Disability benefits. Here in Australia GP's are about 60 years out of date on HEDS, and often think it is "benign". Reality is it is a multisystem disorder of connective tissue that is EVERYWHERE in your body, not just bone, muscles, skin, ligaments, but gut, cervix, blood vessels, eyes, etc.

I have multiple invisible disabilities. I have 1. epilepsy, 2. A typical autism & 3. when I was a kid I had mild dyslexia & dyspraxia- However the difficulties they caused me nowadays my doctors package with my autism. People often judge. It can be hurtful sometimes and annoying at other times. It’s not just the things people think we can’t do that can be damaging but sometimes the things they think we should be able to do because we aren’t physically disabled. Pleas people yes treat us like a normal human being but also if we say we can’t do something then respect that too.

I am 34 and with Parkinson's disease and people tell me it's something else. I politely say I trust the two separate neurologist who said it and not strangers who don't have any medical training. I know it's rare for someone under 40 but it happens.

@TheMazinoz

Жыл бұрын

Sure does. Gem points out this ageist disability stereotype issue in another of her videos. Geez, kids can get rheumatoid arthritis.

Thank you for this video I was so looking forward to it, I really hope people will get some awareness after watching your video.☺️ I have an invisible disability called MPS type 1 it is a rare syndrome some are visible but some are not. I have never understood the meaning of it as a child nor as to why I found simple things difficult so I decided to ignore it, but as I got older it got harder to ignore as my condition is getting worse because it is effecting my everyday task physically, I now have to rely on a rollator or mobility scooter to keep me balanced and to save my energy for when I get home so I can spend time with my family or do something I love to do otherwise I would have a very numb body where I can't move at all even to feed myself or use the toilet on my own so I have to rely on equipment but some equipment can't be found, expensive or is not helpful. Thing is though I don't have the courage to tell people what is wrong with me when they ask me because they have saw me since childhood as a normal looking child but now an adult I still look normal but physically I struggle, so I end up saying the wrong thing due to panicking and not sure what to say, they would take it as if it's nothing which I kind of don't mind because I don't want there attention, but I know they are going have to know as there might be a day where I'm having a bad day or need a bit of support but I'm not asking for it because I'm embarrassed or scared that's when I end up thinking, people might think I'm being lazy or still acting like a child because I can't feed myself or get dressed, The fact is I try my VERY best in everything I do, I am learning to ignore them but there are times where I just can't help it so I end up ignoring what I need, to get me to do everyday task or go to places, that's when I end up feeling very low but I push myself to ignore what others think of me it is not easy but better than sitting at home doing absolutely nothing. To those people who are also suffering I want to say ignore what others think about you just be who you are at the end of the day it is you that matters, if you've tried so hard to find something that helps you like some sort of walking aid etc but then your having some people telling you that you don't need that ignore them if it helps you just stick to it because you know your body well than anyone else beside your the one who's going to be in pain not them it's not just that you should be enjoying your life just like normal people would. I normally wouldn't leave a comment but this time I felt like I had to, to let people with invisible or visible disability know that your are not alone ☺️

@Wheelsnoheels

6 жыл бұрын

Thank you for your comment. Yes I hope it will help others too. xxx

@TheMazinoz

Жыл бұрын

Life is hard enough without these jerks making you feel like you don't want to go out even. There are also some things you have to do "in person" like buy clothes or shoes or you just want to get groceries. I love my new rollator, so far no hassling. I use it because of "exercise intolerance" due to pain and fatigue from HEDS. I've been "exercise intolerant" ie exhausted by exercise since childhood. Also hypoglycaemia, so need to stop and eat and rest. Covid made this very difficult. I'm almost 70 but look like a 'trained athlete" as my rheumatologist said. Physical training is why.

It’s because you’re young. I get all sorts of looks and comments before my husband pulls out my chair. Young people can’t be disabled apparently.

❤ Thank you for this and ALL of your videos!!!

Our lives are made so much worse due to the fact we have to run this gauntlet of "proving" ourselves worthy enough to be granted access to the meagerest of accommodations over and over and over again. Everyone from our doctor to our workplace to our family to the random bozo on the street, they all demand we be "disabled enough" for the privledge of being left alone. It never ends. We can never earn respect. It's exhausting, humiliating, soul destroying, and sometimes outright scary.

@TheMazinoz

Жыл бұрын

Absolutely!

Amen...thank-you!!

While this is most likely true for most of the invisible disabilities that scroll across the screen, I will stick to the example of Charcot-Marie-Tooth (CMT for short) as that is what I'm affected by. CMT is the "old" name and today it's classified together with other forms under the more generic term Hereditary Motoric Sensoric Neuropathy (HMSN for short). HMSN is further divided into a number of types, and some of those types are further divided into subtypes. For those interested I recommend this video for a short overview: kzread.info/dash/bejne/fo16qcRrg7S4d9I.html A very long way to a fairly obvious point for many of us. While a name might give somebody else a vague idea, only you know how you are affected. I have what is outside Japan the most common form, where the speed at which the signals travel along the nerves are reduced. This manifest itself in reduced walking speed, reduced walking distance as fatigue aggravates other symptoms, reduced balance which has lead to multiple injuries, and a need for a more constant walking speed. On a normal day I use no aids of any kind. But walking down a set of stairs is a challenge (up is easier, which my doctor has told me is normal) so I normally need to take the elevator, but that has lead to me getting some strange looks. I find that generally older people are less likely to make assumptions. Generally I ignore anybody that gives me any looks as I find it to be a waste of energy to say anything to them. However there are those rare people that you can actually influence, I find that the length of time of their gaze is a good indication. On those few days a year (2 or 3) that I use a cane for extra support I see a significant difference in people's reaction. I don't like all the extra attention it gets, as it makes me feel as the cane is the focus and not me as a person.

Hi. Thank you for the video.. i have a ‏genetic disease ..some days you can't tell something isn't right.. some days like today i cent get up.. people don't realize how much they don't understand...

I have hEDS and I use varying mobility aids (or none) based on my pain and ability that day. The difference in how I'm treated is insanely frustrating. Still disabled! 😑

Most if my "disabilities" are invisible, but they impact my health a lot. My husband is even struggling to still understand it all even after 5 years, (they were not apparent when we started dating). I struggle with lymphadema, chronic heart failure, PCOS, and am on watch for endometriosis as my menstrual cycle only comes a few times a year at most. This leaves me sometimes needing the motor cart when my legs hurt, even though I try to walk everywhere and have not talked to my doctors about a handicap plaquard. No body questions it when I have to use oxygen though. I think most people act badly about it due to myself being overweight too.

You see, my thing is this, I respect the privacy of people with special needs and or challenges. The only time I feel like I’m being violated is when someone doesn’t trust me simply because I have blindness if someone questions me as far as what my disability is, then I have no trouble explaining my disabilities to them also I don’t mind describing when it’s like and showing them what it’s like. So when it comes to questioning, for me it depends upon the situation. As someone with special needs I don’t like to be acknowledge that’s disabled because I’m not disabled you are only as disabled as you feel. With that being said, I support the special-needs community in all it’s glory. I do have some unseen disabilities no thanks to a TBI. So I know how You feel

I could tell so many of these issues. The worst time I have had was in Red Lobster. My GI is shutting down. I try and go with my family to eat. I can't eat over a few bites and so I immediately ask for the Manager. Sea food is fairly easy to digest so we normally try to go to somewhere when I can get out and eat just 5 or so shrimp and baked potato. Needless to say I very nicely explain what is wrong with me and ask to be aloud to get a child's size or share with my family. Not once BUT TWICE I had, the SAME waitress. She brought out my Shrimp on top of wild rice. I can't eat wild rice. It is to difficult to digest. I politely explained AGAIN that I can't eat ANYTHING but a baked potato(must be extremely soft) and shrimp. She griped and took it back in. This time she brought it out on steamed Broccoli(which for me is raw) I can't eat it! Then she started to slam the plate down on her tray! And began to scream at me are you allergic! Are you, Allergic! Over and over! I finally said yes because the ENTIRE restaurant is staring at me! The frist time I called Red Lobster, I'm sharing the name because no one should have to go through this once, even worse to have her do it Twice! Without admitting that this was Illegal and is Discriminatory! You would think that a Black woman, in the Southern States of US, should know what it feels like to be discriminated against! Red Lobster actually REFUSED to see this as Discrimination and that I demanded they fire her the 1st time! The second time the manager, whom was a assistant manager the first time. And refused to help me to 1st time. Now he is the manager and refused to even come out to talk to me! Thanks for your post! No one should go through that.

I have multiple invisible disabilities. I have chronic back pain due to an L4 + L5 burst fracture which almost left me paralysed. I broke both my heels, so now I can not walk for long distances. I also have a mental illness. But on the outside I look perfectly normal with no disabilities. My two worst experiences were when the train chauf. didnt want to pull out a ramp for my mobility scooter and when a bus driver didnt want to pull out a ramp for my wheelchair 2 years ago when I needed one.

I know this is an older video, but thanks, from someone with lupus and fibro (an invisible disability). The last 2 times I've went to use scoot carts in grocery stores by myself I've had people literally, physically pull me out of them and tell me I should be ashamed of wasting resources. I'm blessed enough to be able to walk without trouble most the time (thus not limited by the way the world is set up much of the time), but have pain and lung issues that I prefer to use a scoot cart if I'm having a bad day. To this day im terrified of using scooter carts if my husband isnt there to stand up for me. I try to use these resources sparingly only when I actually need them. I dont even have disabled parking tag because I'm ashamed and scared most the time. It's been a decade since my diagnosis and I still dont want to look like I'm wasting resources. I like to think I'm part time disabled because I'm able to be mostly unimpaired or can struggle through without aids without much consequence. Since I'm lucky enough to feel mostly well enough to work full time but that often leaves nothing left for the rest of my day. I have considered a walker during my worst times, but it's not an every time thing and i know I'll be looked at as faking it in my small town.

@TheMazinoz

Жыл бұрын

It's sad that we are intimidated and bullied out of using things that make our life tolerable by these jerk ableists who think they have the right and knowledge to judge us.

I've seen so many news stories about people who parked in one of these spots and wasn't visibly disabled, so somebody left a shitty note on their car. Like...really?

@mayflower2158

3 жыл бұрын

Because none of these ..... actually have the nerve to confront that they have to leave stupid notes & run away

@TheMazinoz

Жыл бұрын

@@mayflower2158 And never leave their name and address or phone number! Gutless, insecure ...who have to make themselves feel better by picking on other people. People with disabilities are seen as an easy target by some of these....

I grew up having learning difficulties due to my delayed speech and would affect my learning and behaviour in class. I went to a mainstream nursery school and three special schools until I went a mainstream college at 16. In 2018, I was asked during the Miss Ghana UK audition by one of the coaches if I had autism and I was like “no, why”? I was a bit offended by it. And she said “because of the way you behave and I work with children who have it”. That was such a direct question and it was a bit rude. She would accuse of me asking inappropriate questions during the audition. I was just stressed out and that’s probably why but everyone there was anxious and stressed too. That’s why they wouldn’t take me on because they could see that I struggled with learning a traditional Ghanaian dance. Also, I currently work in a care home as bank staff but was not offered a full time position for laundry assistant because someone else had a better experience. I also think that it was due to my learning difficulties so they thought I would not be able to perform well on a full time basis even though I received training from them for 8 months. I felt like I should’ve been offered a chance because I was familiar with the system. My needs are mild but I could receive training from them. There’s been a lack of patience and respect from the management which has impacted on my mentality so I am going to leave that company. I will find another full time job in laundry elsewhere. I feel like when you have a disability or a learning need, there could be chances you may not be accepted for a full time job. At times, I do feel ashamed of my learning needs based on how others perceive me as.

I have people look at me oddly for using disabled toilets as I have multiple invisible disability. I need the grab rails to get back up, I sometimes need my partner to be with me if I am having an anxiety attack and they are the opposite sex to me, hand dyers and other people talking ect can lead to stress and I need a cleaner environment or a environment that my self or my partner can clean easily. It really anoyes me when people disuse disabled bathroom and vandalise them but I would never question some that is using one. I just wish that more non-disabled people would respect them as by using them it can put some disabled people's health at risk. I have also had people refuse to give up the seats on bus and trains this has lead to me hurting my self and falling on to others. Just because you can't see some disability doesn't mean that it's not there. I now cary a I'd card that has my photo and list my disabilities on it as I am getting fed up with explaining why I need help or adaptions.

I have chronic migraines (make me dizzy, when I have them), severe depression, generalized Anxiety Disorder, social anxiety, and endometriosis. They all suck when they go hand in hand.

I have CRPS in my knee which is technically an invisible chronic pain disability, but it also can cause discolouration and swelling and I’m am constantly on and off crutches so sometimes it is somewhat visible. I am very lucky that haven’t really had any issues with the public yet (although I don’t usually use disabled bathrooms because most of the time I don’t need to and I’m still working on getting a blue badge so I can’t use disabled parking yet anyway). However, about 8 months ago I did have a doctor in A&E not believe me about my disability because he had never heard of it before, so he sent me home without any extra pain relief even though my entire leg was swollen, patchy blue and red, I couldn’t move my knee or ankle and I screamed blue murder every time he tried to touch my leg. He told me “torn tendons can be surprisingly painful” and no matter how many times I told him that I already have a diagnosis, I didn’t tear a tendon, I’ve torn a tendon before and that doesn’t even compare to this, etc he wouldn’t listen and just sent me home with a physio appointment the next day (which felt like he was rubbing salt in the wound, I couldn’t even put a sock on because the pain radiating to my foot was so bad but he expected me to be able to do physio!). This is why we need awareness for less common disabilities like CRPS.

100% You are so right!

Some people don't think before they speak, have agression issues or simply have no empathy or compassion. In some way that probably means part of their brain(s) is disabled. I guess we can only try to educate. Such people obviously have issues of their own!

I have multiple conditions and use a wheelchair part time - but I can walk on good day. , I spent a few years on crutches as well and One time in a restaurant I was stood waiting outside a disabled loo / baby change. As the door opened and person came out , before I could go in a woman with 2 kids physically pushed past me to go in, I politely said that I was waiting for the disabled loo and she pretty much just rolled her eyes and said “your only on crushes so just use the ladies!” So yea... :/

I will admit to being a bit judgey with disabled parking spaces (my parents are and I’m not excusing it but I was a kid) in the past. And then karma struck I got diagnosed with hypermobile Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia syndrome, probable mast cell activation syndrome and my neck is hypermobile and I need to go see neurology as my balance is rubbish, I feel drunk often and it’s impacting my job but my boss is patient. It was a wake up call, I can tell you. Now I’m the one being stared at when I sit in priority spots and get help with my bags into air planes etc. I don’t judge anymore and I try and educate people who were perhaps raised like me to believe that only people in wheelchairs or using mobility aids were disabled when it is a vastly more complex spectrum of conditions and ability. I don’t think the media helps because disabled is always played one way but I think with better representation it may change. Love the video.

I have Aspergers (neurological) and some hypermobility (mostly in my legs) Non of these are visible except if i dont remember something or react to something differently (i can laugh at something bad) also hypersensitivity, headaches and migraines are a thing. And i start to ramble like this thats a visible aspect

I have an invisible disabilitie I have epilepsy and it's a real disabilitie and I don't look disabled either so I can understand how you feel gem

I have a mystery illness and I have mobility aids. So, at a hospital follow up with a doctor who wasn't my gp (she was booked out) I asked for a disabled car permit. This doctor looked me in the eye and said "isn't this supposed to be temporary?". A DOCTOR said this to me! I've been sick for 2 years and the reason I was in the hospital in the first place was because I suddenly lost the ability to walk and feel my legs. It's been 2 months and I'm walking better, but I still can't feel my legs. My dad will also say things like "lots of disabled people work and have lives." Like cool dad did you miss the past 2 years because I'm pretty sure I'm the one with memory issues. I don't think it really helps that I was originally diagnosed with a psycho somatic disorder and now my doctors have no idea what's going on. So, I can't tell someone to shove off because I have Lyme disease or epilepsy.

It annoys me so much when people don’t understand, I’m also young so I’m not “supposed” to be in pain or feeling dizzy when I stand up :/ #nfwarrior

I have a neurological disorder, on the out side I look ‘fine’. It effects my sight, hearing, balance and speech and reflexes sometimes my brain hits pause and I’m aware of time passing but just have to wait until my brain presses play again, I also get very dizzy and have passed out a couple of times. I have an assistance dog in training, everyone asks who I’m training her for and look surprised when I say myself. I don’t mind talking about the condition (idiopathic intercranial hypertension / psudotumour cerebri) it’s rare and most people are actually nice and talk to me but then there are others who are more upset that they can’t pet my dog... in a not pets but assistance dogs shop...