"Wheelchairs can also be used preventatively, to PREVENT flare-ups." This is how I used my chair primarily. I needed to hear this and feel validated. Thank you!
Aww thank you for wording this. Me too \0/ i feel validated by your message. Yay it feels so good to feel connected to others that fully understand \0/
I will just say that we should NEVER need another person to feel “validated” for any reason because we know the truth❣️ This being said I am also a PWC user for safety reasons and risk for other injuries and when asked about it I simply tell people that they don’t have the time for the long or short story unless they are being on the real.
Never let anybody tell you what you need, you and your doctor know you need the device to prevent injury or progression of your illness, realize that you are valid and beautiful in your own way
Thing that gets me: in order to get a wheelchair covered by some health insurance you have to be unable to walk even from one room to another in your house. It's absurd and keeps people with mobility limitations stuck in their homes because as long as they can stand up, they'll have to pay out of pocket to be able to go out.
The worn-down shoes one is probably the most ridiculous I've heard because good lord even if somebody was a full-time wheelchair user, secondhand shoes exist. As it stands I do sometimes worry people will accuse me of faking when I go out with my cane (fibromyalgia and an arthritic knee that combine to make me sometimes have sudden bouts of trouble walking/balancing without warning). Had a friend with a motorized wheelchair who has been accused of faking because she can get up for VERY short periods. And people getting up in the faces of people who have the plates/tags but don't "look disabled" ought to consider that maybe the doctor doing the paperwork to get them that tag miiiight know a bit more about whether that person is disabled than some rando on the street.
This. Like I have a umber of issues with my organs one being hypoplastic left heart syndrome. Aka I was born without the left side of my heart. Like you want to tell me I don't need a mobility aid or the close spot again? Also I can't hold my pee very well because I'm missingn a kidney and have gallstones and so I use whichever bathroom is open/closest if it's the handicap accessible one then sorry Jr. Needed it
This topic is so important, every time I go outside with one of my clients that is in a wheelchair, I can tell that people think they're "confined" to it and that the wheelchair must mean they cannot walk at all. When they do get up, people are so confused. I have 11 clients that use a wheelchair. Only two of them cannot walk at all and do not have the ability to push themselves up without assistance, they spend every waking hour in their wheelchairs. Two of them can walk when someone is holding them from behind, they are also almost always in their wheelchairs. Two of them currently use a wheelchair because of an injury but they can both still stand and one of them can walk with assistance, they are atm almost always in their wheelchairs. One of them can push himself up and stand, he's always either in his wheelchair or sitting on a chair with his feet on the wheelchair. One of them walks around the house and very small distances on his own and only uses a wheelchair outside. The rest only use the wheelchair outside or on a bad day and otherwise rely on rollators. I would argue ambulatory wheelchair users are probably the most common out of all wheelchair users.
Thank you for this necessary topic. As a child my grandmother was the first example of an ambulatory wheelchair user. She had lupus and walked without a mobility aid indoors, then crutches, then a wheelchair or a combination of them. I've never questioned mobility aid usage since. Now having ME/CFS, I use a cane or rollator, or nothing. All depends on my symptoms for the day. I'm also "young" so I get the looks from people when I suddenly "forget" my mobility aid. I don't drive, but the looks are just as harsh on public transportation. Why do folks have such a black or white view of disability? The rigidity makes it difficult to emotionally survive.
Yes! The first time I EVER had the guts to use my handicap tag was after my first major spinal surgery. It was my first time out alone after recovery and I was proud of myself to be able to go to the grocery store! When I got out of my car, an older man started yelling at me and accusing me of stealing my grandparents tag....I’m so glad I didn’t start crying. I lifted up my shirt and showed him my scars from the surgery and he tried to get away from me so fast (and without apologizing). Anyways, thank you for posting!!!
I have EDS and I have a huge fear of using a wheelchair. Not because I fear the wheelchair but because I fear people getting in my business if I am only using it part time.
I need the disabled spot so much more if I don’t have my chair. With my power chair I can park farther out. People don’t realize that in a lot of cases our chairs give us back mobility.
@@theannieelainey When there's only one handicapped spot, or one van-only spot, I'd prefer to leave it for someone who needs it more than I do. It's mostly people sent from the state who drive me in normal cars, and try to be nice by parking there for me. I can't seem to explain that, while I need to be close, other people really need those spots for their ramps and lifts. It turns into a "It'll be fine! I was just trying to be nice! What are you so worried about?" awkward thing where I seem ungrateful. If there's room, can you address something about the, I guess, priority order? You're better at wording stuff than I am. (You did an amazing job keeping this video short, so many longer ones only get watched by people who already know!)
Last year I had the amazing privilege of being pushed in a chair to.. a Dance Dance Revolution machine. I got to explode myself on those 2 songs. Set to "easy", but still. I'm SO glad I did, because I don't think I could now. Next week, if I'm lucky, I'll get a push to the movies, all the way to the stairs. I wouldn't be able to do those things if I hadn't been pushed there, and I'll spend a while recovering. Every time I get ashamed and try to do everything myself "like a normal person" I end up needing to go home. Am I afraid a stranger will come lecture me AGAIN? Totally. Am I still going? Totally. Thanks for the video.
I have ME/CFS and don't find myself in public spaces very often. But when I do, and I'm being pushed in my wheelchair, I like to purposely stand up in front of strangers before sitting back down and continuing on my way. Just to confuse them a bit ;) or at least challenge their assumptions. Disability is such a wide, and for some people inconsistent, spectrum. We need more awareness of this fact. Rock on fellow ambulatories. You are awesome.
I use a wheelchair if there is a lot of standing or walking involved in an activity and when I stand up someone always HAS to make a comment it makes it so I’m nervous every time and it shouldn’t be that way thank you for this xx
My partner has Hypermobile Ehlers Danlos Syndrome and uses a wheelchair about half the time whether it's due to pain, fatigue, or saving their energy and preventing a flare up before important plans that require them to be out of their chair. You really hit the nail on the head in this video and I am definitely going to share it.
I have POTS and use a wheelchair, and I was so so nervous to move in to a new apartment with roommates this year because I tend to walk around the house, or very short distances. Thankfully they have been very understanding so far but I still feel quite guilty/uncomfortable getting out of my chair to reach something on the top shelf (or similar situations)! I wish every character who could move their legs in a wheelchair in the media wasn't portrayed as faking! Then I wouldn't feel so embarrassed cause I could say "oh I'm just like ___" and not have to spend the next hour of my life explaining (validating) my need to be in a wheelchair.
YES! Thank you for this video! I use a wheelchair, knee scooter, bike, whatever ! I can't walk far but... I LOVE to dance and having EDS hypermobile, I'm a fantastic dancer! I am light on my feet , can only dance alone (no tugging on my arms or touching my shoulders!) but I love to dance. I depend on disabled spots ! Otherwise I can't make it into most buildings. People who do not have disabilities have no right to speak for those of us who do!
I don’t have a wheelchair of my own, but I have used rentals at the mall and such. It took me a long time to actually do so, and a big part of why was because I was afraid I would be harassed or attacked if I so much as moved my legs, let alone stood up or walked. I don’t particularly care what a random stranger thinks of me, but being harassed is still scary and vulnerable. Please please please if you see someone harassing a wheelchair user for “faking” or hear people spreading the idea that all wheelchair users are completely unable to walk/use their legs, correct them! Soooo many people are afraid to use aids that could really help them and/or have horrible experiences being harassed while using them because of misconceptions like this.
Honestly this misconception is so absurd to me in the first place, like there are even full time wheelchair users who are technically ambulatory because they may take a step or two while transferring in/out of their wheelchair. Abled people are really so oblivious (and go out of their way to listen to other abled people over disabled people about disability, but...)
i'm getting wheelchair this week for chronic pain and fatigue as well as to prevent myself from collapsing from the fatigue and other things. I've been constantly doubting myself and my need for a chair but these type of videos really help. thank you
i love these types of videos. i use a travel wheelchair for once-in-a-blue-moon trips and long distances, and a walker at all other times. i'm really tired of able-bodied people acting like they know more about disabilities than disabled people. i have cerebral palsy, so my sense of balance is non-existant. when i'm in public and i have to open a door, i'll use my body to hold it open, then push my walker through, and then myself as the door closes behind me. but no, some (albeit well-meaning) able-bodied person has to come along and be like, "oh i'll get that for you" and it throws off my whole system and sense of balance. as in, i'm more in danger of falling now than if they hadn't held the door. i think what a lot of abled people don't realize is that physcially disabled people learn to adapt and navigate *much earlier* and in a much different way than they do. we're not helpless, and we can adapt with assistance. just like they do. like, just let us live our lives. if we need help, we will ask for it. it's that simple.
Great video! This is such an important topic! I lost my my personal injury case a few years ago because I didn’t need to use my cane all the time. The defense got the jury to believe I was faking it. According to them, if I was really disabled I would need to use my cane all the time. This stereotype ruined my chance of for justice and help with my medical costs. I am not the only person this happens too. Many people receiving disability get accused of this all the time. This is a stereotype that needs to end 😞 Thanks again for sharing! As always sending you lots of happy mermaid vibes and all my love 😋💖
I can't speak for the quality of everything that happens with her since I've only watched clips but I really loved seeing lisa hammond on eastenders because she's an actually ambulatory wheelchair user and on the show most of the time she's in her chair but sometimes she stands and walks too and I really loved it so much
I'm an ambulatory wheelchair so thank you for this video. I use crutches and my cane in my room but everywhere else basically I use my wheelchair. The reference to your disability as a timer on your legs is very relatable. I have eds, and chronic fatigue and pain that comes with that. Thank you for this video!
Your channel has been so important to me in gaining confidence in being a part-time mobility aid user and disabled dancer. Some days I cannot walk without aid. Some days I can't walk at all. Other days I can (and do) dance often with the help of joint braces. I have dealt with so many accusations of faking and exaggerating. Both in real life and on social media. Even occasionally from other disabled people shockingly enough. You have given me so much confidence in realizing that that is their problem. It does not change my reality. It does not make me "less" disabled just because they refuse to see or acknowledge it. Much love, Charlotte.
This is such a great video! Thank you for explaining this so clearly, and so calmly. I am an "AWU", have MECFS. I know I sometimes surprise or shock people when I stand up, and take a few steps...I'm very conscious of it. Also, because when on my own I use a power chair. Sometimes I tell people ahead of time that I can actually stand up and walk a bit, so they aren't confused and startled. Like you, I'm limited to distance, and what also plays into it is how I'm doing overall on a given day. There is also orthostatic intolerance, which can simply exacerbate everything. Thank you!
I also support this and I too have Ehlers-Danlos Syndrome - Vascular Type. Linked to this is the chronic pain, early onset osteoarthritis, chronic fatigue and other things. Have been personally affected as well.
As a fellow ambulatory wheelchair user, thank you for this video! I can't walk for that long (and stand still even less than that) but I can walk some. I have limited mobility, not none. For example, if a bathroom isn't far it's easier for me generally to get up and walk into the bathroom than it is to maneuver a wheelchair into the handicapped stall, if there even is one, but if I get up to just go to the bathroom i'm worried about the disbelieving stares i'll get. Like, no, just because I can walk for one minute doesn't mean I don't need the wheelchair. I have tendinitis in my feet (have had for years), a large hemangioma on my leg from right knee to privates (acts up during low pressure, so if the pressure is low enough it can mean my being able to walk for 1-2 minutes suddenly becomes not at all, and the weather can change on a dime) and spine issues (missing and deformed vertebra and scoliosis). Walking ALWAYS hurts (getting worse over time) but I can typically (on a good day) stand it for a little bit, like enough to get around my house to go to the bathroom, but that's it. Without a wheelchair a day trip anywhere, like a zoo or museum or whatever, is out of the question. Sorry i'm so rambly, but I love this video! I was born with VACTERL Association (it's an acronym and typically letters that one has, only need 3, are capitalized).
I sometimes walk with a stick when my pain, fatigue and balance is really bad. I've been questioned a few times about why I sometimes have a stick and also been accused of garnering sympathy when I use a stick. I actually hate using my stick, I feel so self conscious and embarrassed, which makes it all the more hurtful when people challenge me. I don't have a disabled badge as I'm not badly disabled enough, but I definitely wouldn't call myself able bodied either.
This is a well-made and thoughtful video that should be shared far and wide. I have hEDS and although I can walk for about 15-20 minutes with no problem, standing still is very difficult for me due to blood pooling and orthostatic hypotension. We have to set the example and speak up when we see people harping on or denying those who need mobility aids -- or even a place to sit down.
Love this ❤ we need more allies to help us combat the harmful judgements and assumptions made about ambulatory wheelchair users, part time cane users, etc. It is a scary world out there when you know that you could be harassed at any time because of how largely ignorant so many people are on topics of disability.
This is so common sense. Why do people not think ambulatory wheelchair users exist? Why do they think we're faking it. Distance is always so much more difficult. Obviously! I also have EDS and my worst part is my hips. I experience more pain the farther and longer I walk. But I obviously l can handle short distances and I walk in the house ofc.
So many times people see something we might struggle with and fail to see those things where we are just humans doing a thing. With me, it was reading on the bus. I used a magnifying glass, so? One driver saw what I was reading and loaned me his copy of the next book in the series. That was AWESOME.
MY RHEUMATOLOGIST JUST APPROVED ME FOR AN ELECTRIC WHEELCHAIR! I'm so happy 😊 ive been staying home most of the time because it's so hard for me to go places. I can't wait to take my daughter to museums and parks without hurting so badly I can't enjoy it. Thank you for making this video, because I would have been too ashamed and embarrassed to get a script in the first place. I was so afraid my doctor was going to think I was nuts for even asking. Turns out he was more than happy to provide this mobility aid to me!!! Thank you thank you for being open and talking about this. I think I would have gone back to being agoraphobic if I hadn't found your channel.
This helps me a lot as I'm young (almost 19) and I'm figuring out (slowly) a diagnosis for severe pain and sudden onset of pain can leave me in very difficult situations. I'm looking into being a part time wheelchair user but I know for a fact my insurance wont cover it. Due to being raising in an ableist society I find I have to get over my own ableist thoughts about my condition and that's been hard. Your channel has helped a lot.
I use my wheelchair sometimes and when I do I just can’t bring myself to look up because every time I do I see another person giving me a dirty look, wether it’s because I just don’t look disabled or I move my legs because hey you don’t have to be paralyzed to need to use a wheelchair. It’s terrible when you are transitioning into needing a wheelchair because for one you don’t accept it yourself and secondly everyone makes you feel horrible about using it. I refused to use the wheelchair and would end up in the ER or unable to go anywhere. People just don’t get that it’s hard enough having to use one. I wish I could do all the walking I use to and I’m definertly NOT lucky for using it.
Love love love LOVE LOVVVVEEEE THIS!!!! YES!!!! I’m a part time chair user - I have a folding manual chair with an add on power drive with a joystick (an e-fix drive). It changed my life! It allowed me to keep my part time job! I have hEDS too. I’m also currently training to lead Unconscious Bias workshops (which I will probably add to my life coaching practice too). Unconscious Biases are energy saving mechanisms that our brains use to quickly categorize people and experiences based on stereotypes and/or past experiences. Thinking that a wheelchair user who can stand and walk is “faking” or looking for sympathy are prime examples of Unconscious Bias toward disability. Keep up the amazing work, I love your videos!! 💞
SO...I myself have scoliosis and two sets of fused vertebrae and I don’t need to use a wheelchair/cane all of the time however when I do use my cane I’ve had people look at me like I have four heads because I am apparently too young to be in so much pain that I need a mobility aid. I’ve been told that I am too young to be in pain. It sucks that I have to feel embarrassed about using a mobility aid. Also because my scoliosis isn’t so bad that people can visibly see it upon first glance, and can’t see the fused vertebrae, people think it’s not that bad when it really is! I can no longer dance and I can’t lift anything more than a case of coke even then I’m in pain from that.
Along with all of those conditions, incomplete spinal cord injured people too. My husband is an incomplete C4 quadriplegic. After 2 years he has learned how to walk with a rollator, wheelchair will be needed for any distance or time. His gait is not normal, but people hear quadriplegic and think Christopher Reeve. Mr Reeve was a complete injury. Our daughter has MS. She does not need a chair yet, but has had to tell people off for the handicap placard. Hang in there and thanks for giving us this video.
I was diagnosed with EDS December 2015 and now I'm at the point of being a wheelchair user because my walking is limited as well as preventive measure because my hips dislocated a lot. Thank you for this!!
Love that you mention things like running and dancing. I am disabled myself but not a wheelchair user, but i have a friend who is an ambulatory wheelchair user, he is a dancer and does circus skills as well. People get so confused and rude, but those are simply the things he chooses to use his mobility spoons on, rather than using up all his spoons catching a bus or whatever. Seems perfectly reasonable to me
Sing it sister! Great video topic, more folks need to see! As a zebra, I also bounce back & forth between cane, walker & wheelchair, depending on SO MANY factors. A related story: Last year I got quite the stink-eye from a teenage sales clerk in a Kohl's shoe department, as I stood up from my chariot to walk around a few steps (while holding onto shelf edges & using my folding cane for stability) to try on shoes. He avoided me like the plague. The much older shoe department clerk (in his 70s/80s?) kept trying to "help me" wheel backward out of the narrow display shelving rows (though my mom/caretaker kept telling him I'd be fine) & literally applauded me after, repeatedly commenting how well I handled the chair, as if it were a Grande Prix race car. He then cornered me, talking at me about how wonderful it was to see a lovely, young (late 40s), "handicapped" lady being so brave & independent, getting around so well, etc, etc, etc...,talking over me anytime I tried to politely explain EDS, so, when he did finally, awkwardly ask why I used my chariot, I told him (in his same, patronizing tone of voice) I was lazy that day & just felt like sitting down to shop. The End~ Keep up these great & very meaningful videos Annie! I'll gladly Patreon you when I finally qualify for Disability Assistance (why any diagnosed form of EDS doesn't automatically qualify an applicant is beyond me). Luv ya & gentle hugs : ) p.s. Your longer hair is gorgeous!
The point about movies/tv portraying fake disability is a big brain washer to people in general. Unfortunately it's almost a daily occurrence I have to deal with ignorant and sceptical looking people. It even harbours in my family members, it's gotten to the point for the last decade I mostly stay indoors by myself. So thanks for putting out this video and wording it so well.
This was the best stated video on this subject I have ever seen. Thank you!! It’s so nice to know that others understand on those days where you feel like you’re struggling alone. May your day be blessed 💗
I was out grocery shopping with my mum one day, my wheelchair was in the repair shop that day so we parked in the closest disabled spot to the door so I could walk the short distance and get one of the shop’s wheelchairs. When we returned to the car about 45 minutes later there was a very rude note left saying something along the lines of how dare you park here, you’re not disabled. As I relatively new wheelchair user I was still very self conscious of my wheelchair so I burst out crying. I’m still unable to return to that specific shop.
OMG, such a great video on a very important issue! Also, as a big Jane the Virgin fan, the reveal of Petra's mom not being disabled made me want to throw things. It makes me so mad when otherwise progressive shows pull shit like that.
Such a needed vid, people don't get the time limitation or pain and preventative limitation thing at all. I have a neurological condition where, to oversimplify, light in my eyes makes me very sick. I can manage small amounts for short periodsm but wheb i m out in normal or bright light or sun i have to block it all. meaning functionally at home i have low vision and out and about i am blind. Half the time i just let people assume i am totally blind, because random strangers don't have a right to my complicated medical history, and i don't have the spoons to shove the info into hundreds of resisting brains
I have trouble sitting because of my back, but when people notice that i have a back problem they always ask me to sit down. I can sit for a time, but there's a "figurative timer". Also, i often feel rude about standing while talking to someone who is sitting when we're having coffee together. It often makes conversation awkward even after i explain about my back. It's hard for them to talk about other things after it's come up that i'm in pain.
I totally empathise with your story. I myself have postural tachycardia which makes me act very strangely :-D _ (i need my recliner chair or i need to lie down directly and immediately on the ground for a good 5-15 min. ''Lol.'') _ my question, do you know any support that allows you to sit confortably ?? Like a section of tree trunk ;-p or a swing or a yoga bench/bolster/prop, or a specific pillow ? Or a specific type of foldable stool ? I find in my situation that the position of my legs can help a lot. I have seen someone wearing a wooden box so that she could place it under her feet while sitting, to raise them by 20 centimeters or so. I don't know what she was suffering from. I wish you all the best and all the hugs, as who doesn't need hugs!!!
@@yoshuareece8785 oh this is very practical for picnics at the park :-) _ i wonder the position your body is happy to take when you say sit on the ground. Do you mean squat or lotus-like position ? _ i want to give you an idea that i had, in the case you would really want to sit on a chair by a table, in a public setting. It is a bit unconventionnal, but you would be at the same level as the people at your table. I sit lotus like or squat on chairs, as if i was doing it on the ground. Not every chair is wide enough to do that. So my idea is, just as the girl wirh her wooden box, would be to take with you a wooden board, at the right size, that you could place on the chair to make it flat and at the perfect width. So that you could use the chair just as yoi are using the ground. (Sorry if my english is a bit thick i am trying hard top explain myself. I am not native english) you could bring the board with you, board+strap, wearing it just like a side handbag. My 2 cents.
@@yoshuareece8785 i love the relaxed posture of Ganesh, the god elephant :-) look it up on Google image. He looks confortable, doesn't he ? _ i don't want to explain verbally all the time why i do what i do. And my physical issues. Would it be practical to have a card that explains short and sweet, with a '' i don't want this to take space in the moment i have with you my friend. I would gladly speak about anything else.'' my point is that if we don't want to speak about it, than we shouldn't. Verbally. This keeps the door closed and doesn't give the false impression that we are open to talk about it. ! _ something to play with ... ;-) _ good luck !
My dad can walk about 100 feet with a cane and someone helping him stand, after that he needs a wheelchair. Some people have told my brothers and I that we are just lazy because we put him in a wheelchair instead of helping him walk. What they don’t realize is how high his blood pressure gets and how bad his breathing ability gets. It’s very frustrating.
This! Like yes I know I can walk, captain obvious. Hell sometimes I can run for a little bit. But still have hypoplastic left heart syndrome, scoliosis, polysplenai, missing kidney, enlarged liver, and gallstones from drinking too much oediasure as a kid. So yes dude I DO need my mobility scooter and if I want to leave it somewhere while I walk then Thad my business. Or this event. Was unloading it and this dude walked up to me and this happened: Old guy: what're you putting together? Me: my mobility scooter Old guy: do you really need it to get around Me: yes, why? Old guy: you just look a little mobile putting it together His tone was pretty nasty so I snapped back "yeah well I'm missing half my heart soooo
me in a nutshell after a tumor left me with pendnal nerve issues and cracking my hip skateboarding. not to mention my celia disease casues great fatigue somedays
Thanks. You speak out of my heart. I am an EDS spoonie with POTS, and increasing weakness and subluxation in my legs. I always take crutches with me, because I often need them for walking, and to show ppl yes I am one of those wheelchair users who can still walk. Due to a big MS hospital nearby Many ppl get what MS is- I.e. ambulatory wheelchair users- so this makes it easier for me to be understood from some ppl.
Great video, ty. It gave me great strength. 🌿 I have never had any stranger ask ... can't imagine anybody having the nerve to ask me that. (Except family). I would definitely not answer a stranger.
I am technically able to walk but it’s very hard for me because of POTS&friends. I also use it to prevent falls #ambulatorywheelchairusersexist Kinda like leg timer, egg timer, I can only last like half the time it takes to cook an egg I guess a buddy for the spoon theory?
thank u for mentioning that some people can walk fine but cant stand still. i can sprint short distances and hike, but casual stuff like grocery shopping folds me like a lawn chair
For many years, I have needed a wheelchair. I have suffered, I have missed out on my teenage years because I /can/ walk. I'm still so scared. I lose either way. I hope everyone sees this video and takes it seriously.
I'm not diagnosed with either CFS or POTS but I know for a fact that I can't stand or walk for extended periods of time because there was a time where I literally got hospitalized because I fainted and hit my head but I'm also autistic and have DID and C-PTSD among other things and I'm qualified to get a service dog and I'm hoping to get a multipurpose psychiatric service dog and I've been recently thinking if getting a wheelchair once I move out on my own and after seeing this video it made me feel a little better because I was scared I'd be taking away resources from other disabled people especially disabled people who may be paralyzed. Thank you! 🥺💕✨
Thank you so very much for being so candid and honest about ambulatory wheelchair users. You are definitely setting the world on the right path to the understanding of what is ambulatory wheelchair users
I think about my neuropathy and the daily stares I get because I use all of the above, minus the scooter..still saving for that one. I get no eye contact and the vibe. Big box stores are a nightmare and I just shop online. Much love to explaining and hopefully non disabled people see this and are more educated. ✌️😏
I'm partially paralyzed. I have *some* feeling and control over my legs. I can walk short distances. I can walk about half a mile at most using a walker, and a city block at most using nothing but my legs. I had a spinal cord inquiry, but didn't disrupt ALL the connection in my spine. When I don't have a wheelchair, I feel like there's an invisible force field around me. I can only go a block in each direction. Who can live like that? No strolls (or rolls) through the park, no going out with friends, no visiting family. I love to go out and explore. I'm an ambulatory wheelchair user.
It’s really well explained about differences between me and my brother. My brother has cerebral palsy so he needs a wheelchair almost all the time when he get outside. But me, when I was 15 became blind later I regained partial sight but also diagnosed numerous of rheumatoid diseases, including pelvic fracture due to very early onset osteoporosis at age 18. I’m 30 now it’s very advanced so my bones are fragile like 80 yr old women. I already have had broken bones without any accident so every fall down can cause severe injuries including death. Arthritis and dizziness due to POTS and asthma doesn’t help to prevent accident fall down. But wheelchair is helpful, I can more easily identify obstacles on floor with less risk of fall. Also I’m on a life support (oxygen machine) that clearly I can’t carry it by myself. So either I use a wheelchair or cause a life threatening injury. I think most people definitely choose first one. Even my parents and relatives have had hard time to understand why I need wheelchair and mobility aids, especially before I finally get proper diagnosis. Before then I was labeled as an attention seeker, especially by drs and strangers who never knew I was having arthritis and stuffs.
I use a cane very often now if I'm walking somewhere that doesn't have other support. I have been diagnosed with fibromyalgia but I'm waiting to get in with my rhumetologist to get a collagen panel to be run and an assessment for a connective tissue disorder. I cannot stand or walk for very long but my primary doctor has decided because I and too fat that clearly I just need more excercise so she won't fill out the form for me to have disability parking. I'm hoping my rhumetologist will be different but I doubt it. This has affected me for 8 years and it's getting worse. And when I start falling because the doctors aren't listening I don't know how I will handle that.
This is a very well done and educational video which I'm certainly going to share. Far be it from me to doubt a native speaker, but I always thought that "ambulatory" was pronounced with the emphasis on the first syllable.
Thank you. I'm a professional dancer who is in so much pain, and I have to push through it for the negative comments. If I'm not using my walker 24/7 then I'm obviously faking it... Which has caused my condition to get worse and worse. A deepening depression of a glimmer what I once can do, people expect of me. I want to use my aids without judgement as media made it so dangerous.
I hear you, I have Adhesive Arachnoiditis, very painful. I can stand for 10 minutes and walk maybe 15-25meters. Also walking on ballroom floors are usually ok but walking on grass, dirt or concrete is impossible. Thanks for this video
I understand I have been in the same position where I have been called a faker and I have had my brother tell Ogden Utah UTA Utah Transit Authority bus drivers that I was not really disabled. I have had drivers call me a faker when I needed to start using a 4 wheeled electric scooter. I now can't walk and I use a Quantum 6000Z power chair. It's very hard when you have to be afraid every time you have to prove to people you are disabled.
In my case I have damaged my peripheral nerves off of my spinal cord so it makes it very difficult for me to stand and walk more than a few feet at a time although I can technically use forum crutches I have trouble with Gait and I frequently trip over my crutches and fall I've fallen 5 times in the last year and that's when my doctor decided that I needed to be in a wheelchair full time for my own safety, My condition is called reflex sympathetic Dystrophy I frequently get judged when I am able to stand up or I need to stretch my legs or avoid sores and people see me out of my wheelchair they get very upset and brave judgmental and I live in Oklahoma City where most folks are incredibly rude and just any regard so when they see a disabled person get out of the wheelchair wheelchair they instantly turn on that person I'm considering leaving Oklahoma City for this exact reason because I fear for my safety for many reasons
i wear a ankle support brace and a back one and hearing aids,i walk very weridly and get dizzy i am thinking about using a wheelchair,i also have many many signs of ADHD and bipolar
after beeing dignosed with cronic fatigue and fibro i tried a hole year off forcing myself to walk with just a stick and even then hated it but constantly geting hurt frome fainting and falling down i finly got one and i feel im slowly getting my freedom back
I know lots of people who have Spina Bifida and cp (and other disabilities) who walk and use a wheelchair. Often because of the way they walk, they wear out their shoes quite quickly. Also full time wheelchair users can wear out shoes by playing sports (we ram into each other all the time, things happen) or by the different ways we open doors or transfer in and out of our wheelchair. Please do not verbally or even physically attack these people. That shouldn’t have to be said.
what i don't get is why on earth people would think anyone would fake needing a mobility aid> I got called a faker occassionally using my white cane when I still was able to manage using useful vision out and about. I. could see, but vey badly. The whole world treated me differently with my white cane, people stoppped talking to me as an adult started grabbing me without consent, all this stuff. Why would I WANT that treatment. Don't get me wrong, my life is good and i am proud to be disabled. But it isn't exactly full of perks. Also i constatly have one hand full of cane, two if i am feeling my environment. I am not a wheelchair user, but I have no doubt that if it were truly easier and more comfortable to wheel yourself everywhere instead of walking, if you can walk easily and pain free, abled people would have done it centuries ago. In fact they do, cars, bikes, skateboards, all wheels abled people travel on because it is easier, or more convenient, or more fun, believe me if wheelchairs were easier and more fun for abled people tey would be shoving disabled people out of their wheelchairs and steeling them. But it is like my white cane, if you don't need one, it will probs make life harder not easier, the only reason to have one is cos you need it.
Thanks so much for this! I have Cerebral Palsy and autoimmune encephalitis. I can walk, but need to use my chair for long distance or on days where my energy runs out faster. #ambulatorywheelchairusersunite
I’m sick to death of jokes about people who stand up out of their wheelchairs. I can walk, there’s nothing wrong with my legs but I have severe lung disease so can’t walk far 😡
![Gender Expression and Disability ft. Jessica Kellgren-Fozard [CC]](http://i.ytimg.com/vi/Au1svE1bE8A/mqdefault.jpg)
![Gender Expression and Disability ft. Jessica Kellgren-Fozard [CC]](/img/tr.png)
![Ehlers-Danlos Syndrome: My Diagnosis Journey [CC]](http://i.ytimg.com/vi/ot1HFF7QWbQ/mqdefault.jpg)
"Wheelchairs can also be used preventatively, to PREVENT flare-ups." This is how I used my chair primarily. I needed to hear this and feel validated. Thank you!
Aww thank you for wording this. Me too \0/ i feel validated by your message. Yay it feels so good to feel connected to others that fully understand \0/
I will just say that we should NEVER need another person to feel “validated” for any reason because we know the truth❣️ This being said I am also a PWC user for safety reasons and risk for other injuries and when asked about it I simply tell people that they don’t have the time for the long or short story unless they are being on the real.
Never let anybody tell you what you need, you and your doctor know you need the device to prevent injury or progression of your illness, realize that you are valid and beautiful in your own way
Thing that gets me: in order to get a wheelchair covered by some health insurance you have to be unable to walk even from one room to another in your house. It's absurd and keeps people with mobility limitations stuck in their homes because as long as they can stand up, they'll have to pay out of pocket to be able to go out.
Yeah I bet that's frustrating. Me, for example, I can walk fine in my house it's any farther then that it's a problem. It's distance.
It took a year and a half to get mine, and I'm lucky! I was able to get a rollator from a charity in the meantime. And a shower chair! I
The worn-down shoes one is probably the most ridiculous I've heard because good lord even if somebody was a full-time wheelchair user, secondhand shoes exist. As it stands I do sometimes worry people will accuse me of faking when I go out with my cane (fibromyalgia and an arthritic knee that combine to make me sometimes have sudden bouts of trouble walking/balancing without warning). Had a friend with a motorized wheelchair who has been accused of faking because she can get up for VERY short periods. And people getting up in the faces of people who have the plates/tags but don't "look disabled" ought to consider that maybe the doctor doing the paperwork to get them that tag miiiight know a bit more about whether that person is disabled than some rando on the street.
This. Like I have a umber of issues with my organs one being hypoplastic left heart syndrome. Aka I was born without the left side of my heart. Like you want to tell me I don't need a mobility aid or the close spot again? Also I can't hold my pee very well because I'm missingn a kidney and have gallstones and so I use whichever bathroom is open/closest if it's the handicap accessible one then sorry Jr. Needed it
This topic is so important, every time I go outside with one of my clients that is in a wheelchair, I can tell that people think they're "confined" to it and that the wheelchair must mean they cannot walk at all. When they do get up, people are so confused.
I have 11 clients that use a wheelchair.
Only two of them cannot walk at all and do not have the ability to push themselves up without assistance, they spend every waking hour in their wheelchairs. Two of them can walk when someone is holding them from behind, they are also almost always in their wheelchairs. Two of them currently use a wheelchair because of an injury but they can both still stand and one of them can walk with assistance, they are atm almost always in their wheelchairs. One of them can push himself up and stand, he's always either in his wheelchair or sitting on a chair with his feet on the wheelchair. One of them walks around the house and very small distances on his own and only uses a wheelchair outside. The rest only use the wheelchair outside or on a bad day and otherwise rely on rollators.
I would argue ambulatory wheelchair users are probably the most common out of all wheelchair users.
Being able to walk but not stand still - nailed it. (POTS sure is fun!)
I thought that was just me! Sometimes I think I'm fine, then I get in line and OH NO
Pretty Bad At Everything sometimes I just fall over for no reason.
Thank you for this necessary topic. As a child my grandmother was the first example of an ambulatory wheelchair user. She had lupus and walked without a mobility aid indoors, then crutches, then a wheelchair or a combination of them. I've never questioned mobility aid usage since. Now having ME/CFS, I use a cane or rollator, or nothing. All depends on my symptoms for the day. I'm also "young" so I get the looks from people when I suddenly "forget" my mobility aid. I don't drive, but the looks are just as harsh on public transportation. Why do folks have such a black or white view of disability? The rigidity makes it difficult to emotionally survive.
Yes! The first time I EVER had the guts to use my handicap tag was after my first major spinal surgery. It was my first time out alone after recovery and I was proud of myself to be able to go to the grocery store! When I got out of my car, an older man started yelling at me and accusing me of stealing my grandparents tag....I’m so glad I didn’t start crying. I lifted up my shirt and showed him my scars from the surgery and he tried to get away from me so fast (and without apologizing). Anyways, thank you for posting!!!
Your response was perfect!
I have EDS and I have a huge fear of using a wheelchair. Not because I fear the wheelchair but because I fear people getting in my business if I am only using it part time.
I need the disabled spot so much more if I don’t have my chair. With my power chair I can park farther out. People don’t realize that in a lot of cases our chairs give us back mobility.
Yes, absolutely! Plan on making a video about accessible parking spaces very soon! :)
YES!!!
@@theannieelainey When there's only one handicapped spot, or one van-only spot, I'd prefer to leave it for someone who needs it more than I do. It's mostly people sent from the state who drive me in normal cars, and try to be nice by parking there for me. I can't seem to explain that, while I need to be close, other people really need those spots for their ramps and lifts. It turns into a "It'll be fine! I was just trying to be nice! What are you so worried about?" awkward thing where I seem ungrateful. If there's room, can you address something about the, I guess, priority order? You're better at wording stuff than I am. (You did an amazing job keeping this video short, so many longer ones only get watched by people who already know!)
Last year I had the amazing privilege of being pushed in a chair to.. a Dance Dance Revolution machine. I got to explode myself on those 2 songs. Set to "easy", but still. I'm SO glad I did, because I don't think I could now. Next week, if I'm lucky, I'll get a push to the movies, all the way to the stairs. I wouldn't be able to do those things if I hadn't been pushed there, and I'll spend a while recovering. Every time I get ashamed and try to do everything myself "like a normal person" I end up needing to go home. Am I afraid a stranger will come lecture me AGAIN? Totally. Am I still going? Totally. Thanks for the video.
Hell yeah!! You rock for that!
I have ME/CFS and don't find myself in public spaces very often. But when I do, and I'm being pushed in my wheelchair, I like to purposely stand up in front of strangers before sitting back down and continuing on my way. Just to confuse them a bit ;) or at least challenge their assumptions.
Disability is such a wide, and for some people inconsistent, spectrum. We need more awareness of this fact. Rock on fellow ambulatories. You are awesome.
I use a wheelchair if there is a lot of standing or walking involved in an activity and when I stand up someone always HAS to make a comment it makes it so I’m nervous every time and it shouldn’t be that way thank you for this xx
I grew up as part of an integrated circus - there were so many ambulatory wheelchairs users. I thought it was the norm.
My partner has Hypermobile Ehlers Danlos Syndrome and uses a wheelchair about half the time whether it's due to pain, fatigue, or saving their energy and preventing a flare up before important plans that require them to be out of their chair.
You really hit the nail on the head in this video and I am definitely going to share it.
I have POTS and use a wheelchair, and I was so so nervous to move in to a new apartment with roommates this year because I tend to walk around the house, or very short distances. Thankfully they have been very understanding so far but I still feel quite guilty/uncomfortable getting out of my chair to reach something on the top shelf (or similar situations)! I wish every character who could move their legs in a wheelchair in the media wasn't portrayed as faking! Then I wouldn't feel so embarrassed cause I could say "oh I'm just like ___" and not have to spend the next hour of my life explaining (validating) my need to be in a wheelchair.
YES! Thank you for this video! I use a wheelchair, knee scooter, bike, whatever ! I can't walk far but... I LOVE to dance and having EDS hypermobile, I'm a fantastic dancer! I am light on my feet , can only dance alone (no tugging on my arms or touching my shoulders!) but I love to dance. I depend on disabled spots ! Otherwise I can't make it into most buildings. People who do not have disabilities have no right to speak for those of us who do!
I don’t have a wheelchair of my own, but I have used rentals at the mall and such. It took me a long time to actually do so, and a big part of why was because I was afraid I would be harassed or attacked if I so much as moved my legs, let alone stood up or walked. I don’t particularly care what a random stranger thinks of me, but being harassed is still scary and vulnerable. Please please please if you see someone harassing a wheelchair user for “faking” or hear people spreading the idea that all wheelchair users are completely unable to walk/use their legs, correct them! Soooo many people are afraid to use aids that could really help them and/or have horrible experiences being harassed while using them because of misconceptions like this.
Honestly this misconception is so absurd to me in the first place, like there are even full time wheelchair users who are technically ambulatory because they may take a step or two while transferring in/out of their wheelchair. Abled people are really so oblivious (and go out of their way to listen to other abled people over disabled people about disability, but...)
i'm getting wheelchair this week for chronic pain and fatigue as well as to prevent myself from collapsing from the fatigue and other things. I've been constantly doubting myself and my need for a chair but these type of videos really help. thank you
i love these types of videos. i use a travel wheelchair for once-in-a-blue-moon trips and long distances, and a walker at all other times. i'm really tired of able-bodied people acting like they know more about disabilities than disabled people. i have cerebral palsy, so my sense of balance is non-existant. when i'm in public and i have to open a door, i'll use my body to hold it open, then push my walker through, and then myself as the door closes behind me. but no, some (albeit well-meaning) able-bodied person has to come along and be like, "oh i'll get that for you" and it throws off my whole system and sense of balance. as in, i'm more in danger of falling now than if they hadn't held the door. i think what a lot of abled people don't realize is that physcially disabled people learn to adapt and navigate *much earlier* and in a much different way than they do. we're not helpless, and we can adapt with assistance. just like they do. like, just let us live our lives. if we need help, we will ask for it. it's that simple.
I use a wheelchair when I don’t have my oxygen! I get the dirty looks when I’m without it and use a accesible spot
Great video! This is such an important topic! I lost my my personal injury case a few years ago because I didn’t need to use my cane all the time. The defense got the jury to believe I was faking it. According to them, if I was really disabled I would need to use my cane all the time. This stereotype ruined my chance of for justice and help with my medical costs. I am not the only person this happens too. Many people receiving disability get accused of this all the time. This is a stereotype that needs to end 😞 Thanks again for sharing! As always sending you lots of happy mermaid vibes and all my love 😋💖
I can't speak for the quality of everything that happens with her since I've only watched clips but I really loved seeing lisa hammond on eastenders because she's an actually ambulatory wheelchair user and on the show most of the time she's in her chair but sometimes she stands and walks too and I really loved it so much
Ellis Rory There’s a character in Coronation Street that is too :) and she has EDS in the show and in real life.
I'm an ambulatory wheelchair so thank you for this video. I use crutches and my cane in my room but everywhere else basically I use my wheelchair. The reference to your disability as a timer on your legs is very relatable. I have eds, and chronic fatigue and pain that comes with that. Thank you for this video!
Your channel has been so important to me in gaining confidence in being a part-time mobility aid user and disabled dancer. Some days I cannot walk without aid. Some days I can't walk at all. Other days I can (and do) dance often with the help of joint braces. I have dealt with so many accusations of faking and exaggerating. Both in real life and on social media. Even occasionally from other disabled people shockingly enough. You have given me so much confidence in realizing that that is their problem. It does not change my reality. It does not make me "less" disabled just because they refuse to see or acknowledge it.
Much love,
Charlotte.
This is such a great video! Thank you for explaining this so clearly, and so calmly. I am an "AWU", have MECFS. I know I sometimes surprise or shock people when I stand up, and take a few steps...I'm very conscious of it. Also, because when on my own I use a power chair. Sometimes I tell people ahead of time that I can actually stand up and walk a bit, so they aren't confused and startled. Like you, I'm limited to distance, and what also plays into it is how I'm doing overall on a given day. There is also orthostatic intolerance, which can simply exacerbate everything.
Thank you!
I also support this and I too have Ehlers-Danlos Syndrome - Vascular Type. Linked to this is the chronic pain, early onset osteoarthritis, chronic fatigue and other things. Have been personally affected as well.
As a fellow ambulatory wheelchair user, thank you for this video! I can't walk for that long (and stand still even less than that) but I can walk some. I have limited mobility, not none. For example, if a bathroom isn't far it's easier for me generally to get up and walk into the bathroom than it is to maneuver a wheelchair into the handicapped stall, if there even is one, but if I get up to just go to the bathroom i'm worried about the disbelieving stares i'll get. Like, no, just because I can walk for one minute doesn't mean I don't need the wheelchair.
I have tendinitis in my feet (have had for years), a large hemangioma on my leg from right knee to privates (acts up during low pressure, so if the pressure is low enough it can mean my being able to walk for 1-2 minutes suddenly becomes not at all, and the weather can change on a dime) and spine issues (missing and deformed vertebra and scoliosis). Walking ALWAYS hurts (getting worse over time) but I can typically (on a good day) stand it for a little bit, like enough to get around my house to go to the bathroom, but that's it. Without a wheelchair a day trip anywhere, like a zoo or museum or whatever, is out of the question. Sorry i'm so rambly, but I love this video!
I was born with VACTERL Association (it's an acronym and typically letters that one has, only need 3, are capitalized).
I sometimes walk with a stick when my pain, fatigue and balance is really bad. I've been questioned a few times about why I sometimes have a stick and also been accused of garnering sympathy when I use a stick. I actually hate using my stick, I feel so self conscious and embarrassed, which makes it all the more hurtful when people challenge me. I don't have a disabled badge as I'm not badly disabled enough, but I definitely wouldn't call myself able bodied either.
This is a well-made and thoughtful video that should be shared far and wide. I have hEDS and although I can walk for about 15-20 minutes with no problem, standing still is very difficult for me due to blood pooling and orthostatic hypotension. We have to set the example and speak up when we see people harping on or denying those who need mobility aids -- or even a place to sit down.
Love this ❤ we need more allies to help us combat the harmful judgements and assumptions made about ambulatory wheelchair users, part time cane users, etc. It is a scary world out there when you know that you could be harassed at any time because of how largely ignorant so many people are on topics of disability.
Wonderful video as always Annie! And a helpful explanation for those who still don’t understand that many of us can walk!
This is so common sense. Why do people not think ambulatory wheelchair users exist? Why do they think we're faking it. Distance is always so much more difficult. Obviously! I also have EDS and my worst part is my hips. I experience more pain the farther and longer I walk. But I obviously l can handle short distances and I walk in the house ofc.
So many times people see something we might struggle with and fail to see those things where we are just humans doing a thing. With me, it was reading on the bus. I used a magnifying glass, so? One driver saw what I was reading and loaned me his copy of the next book in the series. That was AWESOME.
MY RHEUMATOLOGIST JUST APPROVED ME FOR AN ELECTRIC WHEELCHAIR! I'm so happy 😊 ive been staying home most of the time because it's so hard for me to go places. I can't wait to take my daughter to museums and parks without hurting so badly I can't enjoy it.
Thank you for making this video, because I would have been too ashamed and embarrassed to get a script in the first place. I was so afraid my doctor was going to think I was nuts for even asking. Turns out he was more than happy to provide this mobility aid to me!!!
Thank you thank you for being open and talking about this. I think I would have gone back to being agoraphobic if I hadn't found your channel.
Thank you! Thank you! Thank you! Yes, we exist. And how far I can walk varies on different days too!
This helps me a lot as I'm young (almost 19) and I'm figuring out (slowly) a diagnosis for severe pain and sudden onset of pain can leave me in very difficult situations. I'm looking into being a part time wheelchair user but I know for a fact my insurance wont cover it. Due to being raising in an ableist society I find I have to get over my own ableist thoughts about my condition and that's been hard. Your channel has helped a lot.
This is so important. As an able bodied person I constantly address this and people always seem surprised.
I use my wheelchair sometimes and when I do I just can’t bring myself to look up because every time I do I see another person giving me a dirty look, wether it’s because I just don’t look disabled or I move my legs because hey you don’t have to be paralyzed to need to use a wheelchair. It’s terrible when you are transitioning into needing a wheelchair because for one you don’t accept it yourself and secondly everyone makes you feel horrible about using it. I refused to use the wheelchair and would end up in the ER or unable to go anywhere. People just don’t get that it’s hard enough having to use one. I wish I could do all the walking I use to and I’m definertly NOT lucky for using it.
Love love love LOVE LOVVVVEEEE THIS!!!! YES!!!! I’m a part time chair user - I have a folding manual chair with an add on power drive with a joystick (an e-fix drive). It changed my life! It allowed me to keep my part time job! I have hEDS too. I’m also currently training to lead Unconscious Bias workshops (which I will probably add to my life coaching practice too). Unconscious Biases are energy saving mechanisms that our brains use to quickly categorize people and experiences based on stereotypes and/or past experiences. Thinking that a wheelchair user who can stand and walk is “faking” or looking for sympathy are prime examples of Unconscious Bias toward disability. Keep up the amazing work, I love your videos!! 💞
I have Spina Bifida and use my chair for work and long distances :) This video speaks to me so much
This is great! I am definitely going to share this because I think this is a really important thing to just know.
I love your videos, there are soo many nvisible disabled people, thank you for keeping us alll inform and connected!
SO...I myself have scoliosis and two sets of fused vertebrae and I don’t need to use a wheelchair/cane all of the time however when I do use my cane I’ve had people look at me like I have four heads because I am apparently too young to be in so much pain that I need a mobility aid. I’ve been told that I am too young to be in pain. It sucks that I have to feel embarrassed about using a mobility aid. Also because my scoliosis isn’t so bad that people can visibly see it upon first glance, and can’t see the fused vertebrae, people think it’s not that bad when it really is! I can no longer dance and I can’t lift anything more than a case of coke even then I’m in pain from that.
Along with all of those conditions, incomplete spinal cord injured people too. My husband is an incomplete C4 quadriplegic. After 2 years he has learned how to walk with a rollator, wheelchair will be needed for any distance or time. His gait is not normal, but people hear quadriplegic and think Christopher Reeve. Mr Reeve was a complete injury. Our daughter has MS. She does not need a chair yet, but has had to tell people off for the handicap placard. Hang in there and thanks for giving us this video.
I was diagnosed with EDS December 2015 and now I'm at the point of being a wheelchair user because my walking is limited as well as preventive measure because my hips dislocated a lot. Thank you for this!!
So good !!! You nailed it !!! This is very inclusive. And heartfelt. Excellent ! Thank you !!!!!
This 👏 video 👏 is so dang necessary 👏yessss u hard freakin working EDS bb 💖👏💕🥰 looooove.
Love that you mention things like running and dancing. I am disabled myself but not a wheelchair user, but i have a friend who is an ambulatory wheelchair user, he is a dancer and does circus skills as well. People get so confused and rude, but those are simply the things he chooses to use his mobility spoons on, rather than using up all his spoons catching a bus or whatever. Seems perfectly reasonable to me
Wonderful video! It's so great to see you updating again.
Sing it sister! Great video topic, more folks need to see! As a zebra, I also bounce back & forth between cane, walker & wheelchair, depending on SO MANY factors. A related story: Last year I got quite the stink-eye from a teenage sales clerk in a Kohl's shoe department, as I stood up from my chariot to walk around a few steps (while holding onto shelf edges & using my folding cane for stability) to try on shoes. He avoided me like the plague. The much older shoe department clerk (in his 70s/80s?) kept trying to "help me" wheel backward out of the narrow display shelving rows (though my mom/caretaker kept telling him I'd be fine) & literally applauded me after, repeatedly commenting how well I handled the chair, as if it were a Grande Prix race car. He then cornered me, talking at me about how wonderful it was to see a lovely, young (late 40s), "handicapped" lady being so brave & independent, getting around so well, etc, etc, etc...,talking over me anytime I tried to politely explain EDS, so, when he did finally, awkwardly ask why I used my chariot, I told him (in his same, patronizing tone of voice) I was lazy that day & just felt like sitting down to shop. The End~ Keep up these great & very meaningful videos Annie! I'll gladly Patreon you when I finally qualify for Disability Assistance (why any diagnosed form of EDS doesn't automatically qualify an applicant is beyond me). Luv ya & gentle hugs : ) p.s. Your longer hair is gorgeous!
The point about movies/tv portraying fake disability is a big brain washer to people in general. Unfortunately it's almost a daily occurrence I have to deal with ignorant and sceptical looking people. It even harbours in my family members, it's gotten to the point for the last decade I mostly stay indoors by myself. So thanks for putting out this video and wording it so well.
This was the best stated video on this subject I have ever seen. Thank you!!
It’s so nice to know that others understand on those days where you feel like you’re struggling alone. May your day be blessed 💗
I was out grocery shopping with my mum one day, my wheelchair was in the repair shop that day so we parked in the closest disabled spot to the door so I could walk the short distance and get one of the shop’s wheelchairs. When we returned to the car about 45 minutes later there was a very rude note left saying something along the lines of how dare you park here, you’re not disabled. As I relatively new wheelchair user I was still very self conscious of my wheelchair so I burst out crying. I’m still unable to return to that specific shop.
OMG, such a great video on a very important issue! Also, as a big Jane the Virgin fan, the reveal of Petra's mom not being disabled made me want to throw things. It makes me so mad when otherwise progressive shows pull shit like that.
Such a needed vid, people don't get the time limitation or pain and preventative limitation thing at all. I have a neurological condition where, to oversimplify, light in my eyes makes me very sick. I can manage small amounts for short periodsm but wheb i m out in normal or bright light or sun i have to block it all. meaning functionally at home i have low vision and out and about i am blind. Half the time i just let people assume i am totally blind, because random strangers don't have a right to my complicated medical history, and i don't have the spoons to shove the info into hundreds of resisting brains
I have trouble sitting because of my back, but when people notice that i have a back problem they always ask me to sit down. I can sit for a time, but there's a "figurative timer".
Also, i often feel rude about standing while talking to someone who is sitting when we're having coffee together. It often makes conversation awkward even after i explain about my back. It's hard for them to talk about other things after it's come up that i'm in pain.
I totally empathise with your story. I myself have postural tachycardia which makes me act very strangely :-D _ (i need my recliner chair or i need to lie down directly and immediately on the ground for a good 5-15 min. ''Lol.'') _ my question, do you know any support that allows you to sit confortably ?? Like a section of tree trunk ;-p or a swing or a yoga bench/bolster/prop, or a specific pillow ? Or a specific type of foldable stool ? I find in my situation that the position of my legs can help a lot. I have seen someone wearing a wooden box so that she could place it under her feet while sitting, to raise them by 20 centimeters or so. I don't know what she was suffering from. I wish you all the best and all the hugs, as who doesn't need hugs!!!
@@celinee.9562 hi Celine E.! Yes, actually i can sit comfortably using a kneeling chair, or if i'm sitting on the floor without any chair.
@@yoshuareece8785 oh this is very practical for picnics at the park :-) _ i wonder the position your body is happy to take when you say sit on the ground. Do you mean squat or lotus-like position ? _ i want to give you an idea that i had, in the case you would really want to sit on a chair by a table, in a public setting. It is a bit unconventionnal, but you would be at the same level as the people at your table. I sit lotus like or squat on chairs, as if i was doing it on the ground. Not every chair is wide enough to do that. So my idea is, just as the girl wirh her wooden box, would be to take with you a wooden board, at the right size, that you could place on the chair to make it flat and at the perfect width. So that you could use the chair just as yoi are using the ground. (Sorry if my english is a bit thick i am trying hard top explain myself. I am not native english) you could bring the board with you, board+strap, wearing it just like a side handbag. My 2 cents.
@@yoshuareece8785 i love the relaxed posture of Ganesh, the god elephant :-) look it up on Google image. He looks confortable, doesn't he ? _ i don't want to explain verbally all the time why i do what i do. And my physical issues. Would it be practical to have a card that explains short and sweet, with a '' i don't want this to take space in the moment i have with you my friend. I would gladly speak about anything else.'' my point is that if we don't want to speak about it, than we shouldn't. Verbally. This keeps the door closed and doesn't give the false impression that we are open to talk about it. ! _ something to play with ... ;-) _ good luck !
My dad can walk about 100 feet with a cane and someone helping him stand, after that he needs a wheelchair. Some people have told my brothers and I that we are just lazy because we put him in a wheelchair instead of helping him walk. What they don’t realize is how high his blood pressure gets and how bad his breathing ability gets. It’s very frustrating.
This! Like yes I know I can walk, captain obvious. Hell sometimes I can run for a little bit. But still have hypoplastic left heart syndrome, scoliosis, polysplenai, missing kidney, enlarged liver, and gallstones from drinking too much oediasure as a kid.
So yes dude I DO need my mobility scooter and if I want to leave it somewhere while I walk then Thad my business.
Or this event. Was unloading it and this dude walked up to me and this happened:
Old guy: what're you putting together?
Me: my mobility scooter
Old guy: do you really need it to get around
Me: yes, why?
Old guy: you just look a little mobile putting it together
His tone was pretty nasty so I snapped back "yeah well I'm missing half my heart soooo
me in a nutshell after a tumor left me with pendnal nerve issues and cracking my hip skateboarding. not to mention my celia disease casues great fatigue somedays
Thanks. You speak out of my heart. I am an EDS spoonie with POTS, and increasing weakness and subluxation in my legs. I always take crutches with me, because I often need them for walking, and to show ppl yes I am one of those wheelchair users who can still walk. Due to a big MS hospital nearby Many ppl get what MS is- I.e. ambulatory wheelchair users- so this makes it easier for me to be understood from some ppl.
Great video, ty. It gave me great strength. 🌿 I have never had any stranger ask ... can't imagine anybody having the nerve to ask me that. (Except family). I would definitely not answer a stranger.
I am technically able to walk but it’s very hard for me because of POTS&friends. I also use it to prevent falls
#ambulatorywheelchairusersexist
Kinda like leg timer, egg timer, I can only last like half the time it takes to cook an egg
I guess a buddy for the spoon theory?
thank u for mentioning that some people can walk fine but cant stand still. i can sprint short distances and hike, but casual stuff like grocery shopping folds me like a lawn chair
For many years, I have needed a wheelchair. I have suffered, I have missed out on my teenage years because I /can/ walk. I'm still so scared. I lose either way. I hope everyone sees this video and takes it seriously.
I'm not diagnosed with either CFS or POTS but I know for a fact that I can't stand or walk for extended periods of time because there was a time where I literally got hospitalized because I fainted and hit my head but I'm also autistic and have DID and C-PTSD among other things and I'm qualified to get a service dog and I'm hoping to get a multipurpose psychiatric service dog and I've been recently thinking if getting a wheelchair once I move out on my own and after seeing this video it made me feel a little better because I was scared I'd be taking away resources from other disabled people especially disabled people who may be paralyzed. Thank you! 🥺💕✨
Thank you so very much for being so candid and honest about ambulatory wheelchair users. You are definitely setting the world on the right path to the understanding of what is ambulatory wheelchair users
I think about my neuropathy and the daily stares I get because I use all of the above, minus the scooter..still saving for that one. I get no eye contact and the vibe. Big box stores are a nightmare and I just shop online. Much love to explaining and hopefully non disabled people see this and are more educated. ✌️😏
I'm partially paralyzed. I have *some* feeling and control over my legs. I can walk short distances. I can walk about half a mile at most using a walker, and a city block at most using nothing but my legs. I had a spinal cord inquiry, but didn't disrupt ALL the connection in my spine. When I don't have a wheelchair, I feel like there's an invisible force field around me. I can only go a block in each direction. Who can live like that? No strolls (or rolls) through the park, no going out with friends, no visiting family. I love to go out and explore. I'm an ambulatory wheelchair user.
It’s really well explained about differences between me and my brother. My brother has cerebral palsy so he needs a wheelchair almost all the time when he get outside. But me, when I was 15 became blind later I regained partial sight but also diagnosed numerous of rheumatoid diseases, including pelvic fracture due to very early onset osteoporosis at age 18. I’m 30 now it’s very advanced so my bones are fragile like 80 yr old women. I already have had broken bones without any accident so every fall down can cause severe injuries including death. Arthritis and dizziness due to POTS and asthma doesn’t help to prevent accident fall down. But wheelchair is helpful, I can more easily identify obstacles on floor with less risk of fall. Also I’m on a life support (oxygen machine) that clearly I can’t carry it by myself. So either I use a wheelchair or cause a life threatening injury. I think most people definitely choose first one. Even my parents and relatives have had hard time to understand why I need wheelchair and mobility aids, especially before I finally get proper diagnosis. Before then I was labeled as an attention seeker, especially by drs and strangers who never knew I was having arthritis and stuffs.
I use a cane very often now if I'm walking somewhere that doesn't have other support. I have been diagnosed with fibromyalgia but I'm waiting to get in with my rhumetologist to get a collagen panel to be run and an assessment for a connective tissue disorder. I cannot stand or walk for very long but my primary doctor has decided because I and too fat that clearly I just need more excercise so she won't fill out the form for me to have disability parking. I'm hoping my rhumetologist will be different but I doubt it. This has affected me for 8 years and it's getting worse. And when I start falling because the doctors aren't listening I don't know how I will handle that.
I love the fact that you included ambulatory scooter users - that would be me :-)
Oh yeah, standing still is a lot harder than walking.
This is a very well done and educational video which I'm certainly going to share.
Far be it from me to doubt a native speaker, but I always thought that "ambulatory" was pronounced with the emphasis on the first syllable.
Thank you. I'm a professional dancer who is in so much pain, and I have to push through it for the negative comments. If I'm not using my walker 24/7 then I'm obviously faking it... Which has caused my condition to get worse and worse. A deepening depression of a glimmer what I once can do, people expect of me. I want to use my aids without judgement as media made it so dangerous.
This was a great video thank you for sharing! Have a great day.
Perfectly stated!
Thank you for this!
Great video - so inspiring 🤩
I hear you, I have Adhesive Arachnoiditis, very painful. I can stand for 10 minutes and walk maybe 15-25meters. Also walking on ballroom floors are usually ok but walking on grass, dirt or concrete is impossible. Thanks for this video
Awesome video. Love the hashtag.
I understand I have been in the same position where I have been called a faker and I have had my brother tell Ogden Utah UTA Utah Transit Authority bus drivers that I was not really disabled. I have had drivers call me a faker when I needed to start using a 4 wheeled electric scooter. I now can't walk and I use a Quantum 6000Z power chair. It's very hard when you have to be afraid every time you have to prove to people you are disabled.
A+
In my case I have damaged my peripheral nerves off of my spinal cord so it makes it very difficult for me to stand and walk more than a few feet at a time although I can technically use forum crutches I have trouble with Gait and I frequently trip over my crutches and fall I've fallen 5 times in the last year and that's when my doctor decided that I needed to be in a wheelchair full time for my own safety, My condition is called reflex sympathetic Dystrophy I frequently get judged when I am able to stand up or I need to stretch my legs or avoid sores and people see me out of my wheelchair they get very upset and brave judgmental and I live in Oklahoma City where most folks are incredibly rude and just any regard so when they see a disabled person get out of the wheelchair wheelchair they instantly turn on that person I'm considering leaving Oklahoma City for this exact reason because I fear for my safety for many reasons
Great work!
I have to use a wheelchair because I have lymphedema and chronic pain.🤷🏽♀️
Sharing this one❣️❣️❣️
Thank you!
I am one of these people because I have spastic diplegia cerebral palsy and it causes me to not be able to walk very far.
i wear a ankle support brace and a back one and hearing aids,i walk very weridly and get dizzy i am thinking about using a wheelchair,i also have many many signs of ADHD and bipolar
after beeing dignosed with cronic fatigue and fibro i tried a hole year off forcing myself to walk with just a stick and even then hated it but constantly geting hurt frome fainting and falling down i finly got one and i feel im slowly getting my freedom back
Thank you😊
This is me. Congestive heart failure and so on.
AMEN TO THIS
I call my self warking wounded
I know lots of people who have Spina Bifida and cp (and other disabilities) who walk and use a wheelchair. Often because of the way they walk, they wear out their shoes quite quickly. Also full time wheelchair users can wear out shoes by playing sports (we ram into each other all the time, things happen) or by the different ways we open doors or transfer in and out of our wheelchair. Please do not verbally or even physically attack these people. That shouldn’t have to be said.
I have cervical myelopathy which is a neurological condition that inhibits my walking. It is, however, very painful when I walk a short distance.
what i don't get is why on earth people would think anyone would fake needing a mobility aid> I got called a faker occassionally using my white cane when I still was able to manage using useful vision out and about. I. could see, but vey badly. The whole world treated me differently with my white cane, people stoppped talking to me as an adult started grabbing me without consent, all this stuff. Why would I WANT that treatment. Don't get me wrong, my life is good and i am proud to be disabled. But it isn't exactly full of perks.
Also i constatly have one hand full of cane, two if i am feeling my environment.
I am not a wheelchair user, but I have no doubt that if it were truly easier and more comfortable to wheel yourself everywhere instead of walking, if you can walk easily and pain free, abled people would have done it centuries ago. In fact they do, cars, bikes, skateboards, all wheels abled people travel on because it is easier, or more convenient, or more fun, believe me if wheelchairs were easier and more fun for abled people tey would be shoving disabled people out of their wheelchairs and steeling them. But it is like my white cane, if you don't need one, it will probs make life harder not easier, the only reason to have one is cos you need it.
Thanks so much for this! I have Cerebral Palsy and autoimmune encephalitis. I can walk, but need to use my chair for long distance or on days where my energy runs out faster. #ambulatorywheelchairusersunite
I’m sick to death of jokes about people who stand up out of their wheelchairs. I can walk, there’s nothing wrong with my legs but I have severe lung disease so can’t walk far 😡
It’s all about the spoons!