I recently saw a photo on Facebook of a young man in a wheelchair at a concert. People were lifting him, chair and all, so he could crowd surf! It was awesome! Something that was posted as a feel good moment, and there was someone commenting “look, he’s lifting his legs. He can move his legs! I’m turning this into a meme!” So many people just assume we’re all paralyzed! I have spina bifida, use a chair, but can move my legs and use braces and crutches to walk short distances. People all the time are shocked when I love my legs to situate myself or to stretch them out!
Don't know if you've heard of a guy called Aaron Fotheringham?. He was born with spina bifida (I was too) and works with Nitro Circus who do 'extreme' stuff like jumping ramps on bikes, or pretty much anything with wheels on it, he does it in his wheelchair!! I was blown away first time I saw it, anyway, sometimes I see comments on his videos of people saying "he moved his legs" or " he stood up!!" (He can stand holding on to something). I really think it's time there was a class at schools teaching about disabilities, maybe attitudes would change then.
Some of us were born with our disabilities. I was diagnosed with SMA when I was two and a half and I've used a wheelchair all my life. The "we're not intelligent" one also irritates me, which is probably why I was competitive academically growing up. I finished my undergrad a semester early and then graduated from my masters program with a 4.0, so yeah I hate that misconception.
I hate it too! I am also a life long wheelchair user with two college degrees and a boatload of accomplishments. When at a restaurant, have you ever had a waiter asking the person you are with what you would like to order as if we are not capable of answering this question?
I love that you mentioned that not everyone in a wheelchair is paralyzed! I use a wheelchair because I have chronic illnesses and when I stand up from my chair, people either look at me like it's a miracle or that I'm just faking it that I need a wheelchair. I hope that people get to learn a lot more about disabilities because of channels like yours and content that touches these type of subjects. A misconceptions I hear a lot ''Well that means you can't have children'', such an annoying misconception. There are enough able bodied parents that cannot raise or care for their children. Why should our disability take away our right to have and raise children?! I can't wait for another misconceptions video!
Super funny but that’s what I was doing today! I was in a full power chair, and now I am in a manual wheelchair, and I’m actually being fitted for something lighter so I can actually start pushing 😍 I got a life altering surgery two years ago that made me more incomplete and I’m getting things back through intense physical therapy, horse therapy/riding… Plus just throwing myself into a different situation so that I can adapt. Great information Chels! Love all of your videos lately! Seriously you are such a light. I was literally on welfare the first 2 to 3 years , it’s hard having a spinal cord injury. But I became so much stronger. Had to fight for everything that I have and things are finally starting to make sense.happy to be friends with you and continue to see your journey 💜
Thanks for covering ambulatory wheelchair users, and for showing the Rollettes! I'm in the tailend of the 9-11 month process of getting my first chair, and I can't wait. I rented one for a week, and even though it was a type 3 (folding, heavy, too big, centre of gravity too far back to do wheelies so needed a friend's help when outside) without power assist, and my chair will be a type 4 (rigid frame like yours) with SmartDrive power assist, it was life changing. Shopping was fun again. I had an entire week where I wasn't randomly sitting on floors, and didn't have a headache (standing gives me headaches, triggers migraines, lots of other drama). I didn't have to worry about getting a seat on transit - I already had one. People were much more helpful - yet I need less help when using a chair than my canes or poles. I have the "EDS Trifecta" - Ehlers Danlos Syndrome, dysauotonomia (main reason for needing a chair), and an autoimmune (MCAS). I'm also a dancer. I haven't done classes since before the pandemic / my conditions got much worse. Watching your videos has helped me a bit with the grieving process of not being able to take class again. ... I might be able to to the barre portion of ballet classes with some adaptions - maybe, but lyrical is completely out (too much changing in position). But I need a wheelchair to rest up for that. The Rollettes are awesome!
I love your “assumptions” statements. I use a manual wheelchair because I can’t stand or walk anymore, because my joints are really loose and can dislocate easily, so pushing is sometimes hard, but I hate it when people come up behind me silently and push me without warning. There’s a small hill on my way home that has a beer garden opposite and so many people nearly get run over, because they see me going slowly up the hill and leap across the road without looking, to ‘help’! Most of my body is affected by my condition, joints, muscles, my skin, my eyes, my heart, my digestive tract, my autonomic system... Also, I haven’t had any assistants or carers since last year and I’m still managing, (not as I’d like, eg. I would love to shower, but I can’t manage to do it on my own, and it’s hard to hire someone when the worlds gone crazy, but hopefully soon!) to keep myself clean, healthy and well fed. Intimacy, ✔️😊 I sort of, have heard of a friend that I used to shoot with who now uses a wheelchair, but most of the people that I know that use wheelchairs are online and I’ve not met them in person, and we’re not related. Although I have three sisters and a couple of nieces that have the same condition as me, but are much younger so don’t need mobility aids yet, so this one might be true for me someday. I can move my legs, and I can easily put my feet behind my head too! One assumption that I wish I could dispel, is that I get what I need from the NHS (the national health service - in England) they only cover the basics. I don’t get any of my mobility aids for free, I pay for them, and some of them are really expensive so I save up and make sacrifices for them because they change the quality of my life so much. Billie.
PLEASE don’t take this as hate, I understand some questions may seem silly and/or common sense but try not to be sarcastic or judgmental when answering. The only way for us able bodied to learn and evolve is by asking questions. If my question was mocked or I was made to feel dumb I’d shut down and never ask further. Someone’s sex life is theirs to share or not share but wondering if someone is able to feel during sex is a reasonable & natural curiosity. I’m just using that as an example, I’m not asking about your sex life 😂
totally agree, I always tell people that if I wasn't injured I would never know about any of this really.. so I always try and educate people on different things when it comes to how I live my life.
Thank you for making this video. It hits home for me. I’m 27 and in under 4 months I’m now a wheelchair user. I went from having 2 jobs, going to school and working out in the gym to barely being able to walk around my own house. It’s now been 6 months and I’m accepting it more & relearning how to do things. I’m still undergoing testing, doctors don’t know what’s wrong yet, but basically I have severe tibial neuropathy & the muscles in my right leg are atrophying. The point to this comment though, is that not all wheelchair users can’t walk, some can, like you said! And even if some can it doesn’t mean that they shouldn’t or “aren’t allowed” to. I have good days and bad days and just because I can walk around a house doesn’t mean I don’t need a wheelchair. Some days I can just bring my walker and walk around the store, others I need my wheelchair right when I wake up. The worst is when people say “I saw you walking yesterday, you’re just using your wheelchair for attention.” Or, “You don’t need a wheelchair, you’re not really disabled.” Everyone is different and all have different reasons for using a wheelchair, and I appreciate you sharing that. Thank you again for creating this.
Thank you so much. I am an ambulatory wheelchair user. I have Elhers Danlos Syndrome. I can walk when absolutely necessary short distance and sometimes can use forearm crutches or canes to help me. I have stairs in my house and no power lift. I either manage it or go up backwards on my bottom. I am tough. My wheelchair make my life easier and more manageable.
I am also disabled. I use a walker now, but in middle and high school I used a wheelchair and some people would just assume I was paralyzed and some people would talk to me in that baby voice. Including adults. I hated that so much.
Some people think that all disabled people are in wheelchairs or that it’s always obvious, but there are a lot of people with invisible disabilities or less severe disabilities, that should also be recognized.
Love it! Im newly injured and been adjusting to wheelchair life. Can you please do a video on your bowel program and how you manage to Cath sitting in a wheelchair? I feel like people don't want to talk about the REAL things we go through. Its like because its deemed "unclassy" or taboo to talk about but you know what, THATS REAL LIFE for wheelchair users.
That's so true. I am paralysed from the waist down and incontinence is a big issue for me. Chelsie, I would also love to hear how you manage things and how you physically navigate getting to the toilet and doing a catheter without help.
I'm a paraplegic from birth due to spina bifida L5/S1. People are constantly trying to help me push my cart at the grocery store (fine to ask, but accept the "thank you, but I've got it", don't persist). Also insurance when trying to get a new wheelchair is SUCH a pain!!! Again, I'm paraplegic from birth, there will be no improvement in my condition. I have to "prove" I need the chair every time I get a new chair. One time took me 7mths to finally get a a new chair approved and in the meantime injured my shoulder when my chair that was no longer adequate rolled from under me mid transfer. Absolutely loathe dealing with insurance!
Yes. I'm one of those that can't walk long distances. My max is being on my feet 1,5 hours or 6 km (it sounds much but it really isn't) for an entire day, no more. So for me I use a scooter ;-) Also, I live in Denmark and we have a very good welfare system where all doctor, hospital and medical cares are all free through taxes and you get free sick leave with a decent pay and a good pension if needed for disabled people. I'm even getting a handicap card which gives me 50 percent off all public transport and free zoo, cinema, museums etc etc - its a great country for people with disabilities. I wish more countries would adopt our system because it's really good.
I routinely shock people when I go through the self checkout lane, pull my power chair up and back in, STAND UP and check out. I have heard it all from "If he'd just exercise more.." "well!,... If he can walk why is he in a power chair?" and then when people stop by my home and see all the saws and the copious amounts of sawdust, I can see the accusations in their eyes. Been in a power chair for 7 years, was in a manual for about 10. went from a 5'11" 185lb body builder to a 350 pound diabetic with twin Titanium supports (hips)
I am not paralyzed but I do have sensory/motor issues. I have nerve damage my spine is compressing my nerves, and I can only walk for very short periods. I feel like lately my issues have gotten worse and I am using my wheelchair more and more. I was injured in the Marines and now I am paying that price. I prefer my manual chair, and I have an appointment for a power assist so I can get around easier. Thank you for putting this video out and not shaming ambulatory wheelchair users.
I'm a new ambulatory wheelchair user, and I'm learning things. People judge me alot though due to that I can take 1 or 2 steps and transfer like that. My legs do move my problem is that I have 3 severe forms of dysautonomia and I pass out with no warning. It's safest for me to be in a wheelchair especially with the weakness in my legs and syncope. Thanks for this video and including us though
I love watching your videos it help for encouragement. My husband helps me but I want to do things my self like getting my self in the shower but it’s a tight fit and my power wheelchair is a little bit too big. And my manual chair is hard to maneuver
I agree with you 100% with your advice on a manual wheelchair and having your home be accessible from the start. When I got out of the hospital after my injury I had to live in a hotel for a couple of weeks because I was fighting to get my home accommodated. To this day it still hasn’t happened but I’m back and making it work.
I was injured two years ago in an accident; had nerve damage to my left leg and hardly left home because even with a cane, I couldn't walk very far without a ton of pain and numbness. Insurance would not cover a chair for me. Such is the healthcare system in the U.S. Fortunately, I've found adaptive activities I can do that don't require a lot of leg power (handcylcing, swimming), but things like wandering around a museum, shopping district, zoo, park, or other large spaces are a thing of the past unless the venues have scooters for people to use.
Girl you are so right, I’m disabled but don’t use a wheelchair. Some once heard me talking , and then he turn to me and said I didn’t know you were so smart...I was like what the heck!..
Many people don't understand how much wheelchairs and other aids actually cost and that many of us have to come out of pocket for them. That's the one I hear the most. I have no health coverage and will be saving up for my daily use wheelchair for at least the next 5 years on my current income. I have a nearly 70-pound hospital-style monstrosity... I mean, chair... that I can't propel. It's like they think what happens is: "Oh, you're injured. Here's your standard-issue ultralightweight, daily-use wheelchair that is perfectly-sized for your specific body type and needs."
MHS / Medicaid just sent me a denial letter for a new set of batteries because "The set you had should last at least a year" I drive my chair on average (With GOOD batteries) around 15 miles a day. SLA batteries, anywhere from $200 to $400.... I love you Indiana!
@@JamesD92763 I'm in Indiana, too, and have been at the mercy of those programs for care. I no longer qualify because I make $100 too much monthly. It really is a painful catch-22. I understand where you're coming from, neighbor! I sure hope you can get your batteries replaced soon.
Thank you! I am a part time, ambulatory wheelchair user. I got sick about 7 years ago. It started off with passing out randomly. I ended up getting a pacemaker in December 2016 (I was only 26) while some things got better other things got worse. I was diagnosed with Postural Orthostatic Tachycardia syndrome (POTs) basically when I stand or even sit too long, my heart rate sky rockets & my blood pressure drops…causing me to drop as well. I don’t use my wheelchair in the house, but if I got anywhere my manual or electric wheelchair goes with me. The looks I get from people when I stand up🤦🏻♂️
I'm a C4-5 incomplete quadriplegic and I can move my arms and legs. I have full use of my right hand and fingers, I have control of my core and back muscles and partial use of my left hand. I can stand with assistance. I write stories on Reddit about my advisability and when I mention that I'm a quad I get SO many people asking "if you're a quad, how are you typing" which drives me crazy. And then there's people that don't believe I'm brain damaged because I don't "sound" brain damaged.
I was too weak when I was really sick but I didn’t want a power chair so I got a power wheels chair so it has power when I need it and if I don’t need it, I just leave it off. Bad thing it’s 78lbs. Then I got a fancy manual chair where I can teach/dance and instruct to seated classes. cuz you know when your dancing I used to constantly hit my elbows on the seat back. So now I teach in this chair and it is perfect. Well I haven’t taught a disabled class yet but I am doing videos for our REFIT®️ instructor group cuz just like you, our bodies aren’t the same. This way the other instructors who might have a participant with mobility issues will know some simple things like if your participants are in the back row, they aren’t gonna see anything but butts😮 😂 that they might not think of like when Been doing it since 2014 as a moderator for folks who would follow along with a bunch of songs. Then in 2015 I officially became a seated REFIT®️ instructor!
Love this video! I'm a C-6 quad my first chair was a manual wheelchair but unfortunately overtime I developed a muscular dystrophy disease call myasthenia gravis, which made my arms too weak to push by myself so I had to use a power wheelchair
You have a lot of the same opinions as I do. Since I've been injured I've always said it's to adapt what's around rather than adapt things for you. I'm a C8 quad, 21 years post, and I've always thought it best to make other newbies figure it out, rather than coddle to their "needs". That's what I did and it made me completely independent. Great video.
My wife and I are both in chairs. She was born with cerebral palsy and walked on crutches when we met. I earned a chair by working hard not smart plus some problems I was born with. We both started in manuals and now both use power. We get a lot of dumb comments. I even saw where a chair user on utube said anyone in a chair with dirt on the bottom of their shoes was a phony. He said if you could stand it meant you didn’t need a chair. I have to use a 4wheel walker and my wife uses crutches around the house cause our house is too small to use our chairs. My own dad and I believe some of her family think that means we don’t really need chairs when we leave the house, that we just use them because we are too lazy. She has 2 torn rotators from walking on crutches her entire life and they always wonder why my legs are always torn up. When I tell them it is from getting up after I fall they don’t get it unless they see me trying to get up. I proved the doctors wrong twice and my wife also has a fused knee from walking around on a broken knee and it wasn’t till I took her to my doctor that she could get anything done other than surgeries to remove loose bone fragments. We hear a lot of weird crap.
Just came across this and some of these misconceptions really hot home for me like if people had their way I’d not go out coz I’m blind in one eye and I’m a wheelchair user it’s crazy how much people think disabled people should be wrapped up in cotton wool when we are just as capable as able bodied people but just need to work a bit harder at times especially if you’re a spoonie like myself
Yaaaas. Thank you for the walking thing. I have lupus and have a combo walker/transport wheelchair (because I dont need a wheelchair in my everyday life but in like heavy activity days like a zoo outing, so i don't need to pay for a special wheelchair especially since my hands and wrists are most affected) Also the people I know in daily wheelchairs party more than I do because im that #introvertlife haha.
Also suggestion/misconception that's applicable to ambulatory wheelchair users: you're in a wheelchair because you gave up. Like no.... im accepting my limits and finding a way to enjoy my life more fully and ration my energy supply so I can do more that I want to!
Yes, i'm time-to-time wheelchair user. And starting of using wheelchair wasn't give up. It was step up. Now i can participate in much more activities and spend more time out if home.
@@elenasayapina6100 Yes! I was thinking I'd have to give up my dream of a disneyland vacation, now that I have a walker/wheelchair I feel like i can plan something like that again! (After COVID of course)
7:43 Thank you I have Secondary Progressive Multiple Sclerosis I can walk short distances. But any distance I need my wheelchair. I'm college education and I have a good paying job. My disease put lesions on my spinal cord and I have a lot of inflammation in my spinal cord. My legs are very weak But my arms are not affected by my disease and are really strong from pushing a manual wheelchair. Isn't it funny that the device that people think makes me weak is why I'm strong. 😅 Hell no are things covered by insurance or the government. I paid for my chair out of pocket. Insurance would only cover a hospital chair and the wheels had no traction. I'm short so the back was to high and I had other issues with it. I love my wheelchair now it's a Ti Lite Aero Z custom fitted to me and there is a world of difference between the two chairs. Insurance can suck it. Also Government isn't paying for a thing when I had a full time good paying job.
Great video, but I might disagree with you somewhat about wanting/needing an accessible house. I have lived in plenty of places where it was not completely and easily accessible for me (I use a wheelchair) and although I can usually adapt to most situations, I prefer to have anything that isn't easily accessible (bathroom doors, steps etc.) Modified to my needs rather than having to adapt to it.
love your outfit you look good in yellow yes sometimes people are just misinformed about disability’s we don’t all fit into the same square box another great video yes would be nice to twitch my nose,bam the house clean
Why is a manual chair better than a power chair? From a completely uneducated outside perspective, it seems like the power chair would be much more convenient? Love this video btw❤️
A very famous one: "All people who use wheelchairs can't walk" or "Omg they just got out of their wheelchair!!!! They're faking it! They can walk!! Fake!!!" People can be so stupid sometimes...
Can you order the kind of wheelchair on line? I’m assuming the manual wheelchairs isn’t the same. I have a manual wheelchair that cost us 130 dollars. I also have a power wheelchair that folds up and supposed to fit in the trunk of a car. But the trunk has to be big.
The house one, I've lived in the same house since I was two, it's two floors, nothing in it is what you might call accessible but like I said I've been here since I was two, I've adapted to it, I bum shuffle up and down stairs, I shuffle around upstairs, the bathroom isn't accessible, normal bath etc, I've just learned my own system of getting around. I am looking for something more accessible though, only because since I hit 40 I got lazier lol
Of coarse your strong you have to push your own weight and the chairs weight around all day & you lift yourself when you transfer that takes strength 💪 girl
I have a debilitating nerve damage current in legs I chose a manual wheelchair over a mobility scooter as in the UK there so many regulations over type that can go to certain places plus I wanted to keep as active in my arms that are ok at the moment
One of my most ask questions is do I know someone who is in a wheelchair even if I have never met them. I also get they think I am someone else then I am and call out that persons name
The insurance thing, Im in the UK, we have the NHS, which I'm not saying is perfect, it isn't, but most things are free, including my catheters, it blows my mind that the U.S. has the system it does.
I am from Germany which is very backward as to handicapped persons. Those prejudices are simply rubbish! The prejudices mentioned seem to come from stupid and/or ignorant people! Why in the world should wheelchair users not live normal lives?! The mind and in most cases the upper body are still working! It seems nevertheless that prejudices are less widely spread in the US than in Germany. I have been fascinated by the series "push girls" where I have seen yourself as well. In this series, wheelchair using persons do not appear as poor and miserable beings, but active and attractive women. As a little boy, I heard of becoming paralyzed as horror scenario. I have heard something like that:"Be careful! Or do you want to end up in a wheelchair?!" Of course, it is not an easy fate to become paralyzed, however, there are even more tragic fates. As an able-bodied person, I could imagine living as a paraplegic or lower quadriplegic. However, I imagine high quadriplegia or developing towards total immobility by diseases like ALS or steadily furthering muscular atrophies to be truly awful! In "push girls", you had a breakdown over remembering your walking years. Do you have such days, yet, or has living as a paraplegic become your new normal that much that your walking life is nothing more than a distant past that you do not wish back? Getting paralyzed is apparently going along with the road from grief and denial towards acceptance. However, I have read of a few persons who did not break down emotionally. Is it truly thinkable that a newly injured person reacts on the news by thinking at once of adjusting to the new life instead of anger and grief during the first time? Do you yourself know, perhaps, somebody who has at once or very quickly accepted his or her fate? Thank you very much for your answering comment.
Me getting pulled behind car rather then putting my chair in it to cross the parking lot...guy yells out "thats not safe" my reply" im already in a chair what else will happen"
On 4:00 on what you talked about it is very true. Im sci c-3 c-4 in 2018 my therapist ot was telling me and telling me to get a power wheelchair I kept on saying no I want a regular manual chair I want to use both of my hands and arms to row myself. And she kept on telling me to get a power wheelchair and I got fed up with it. So I told her straight up who is going to be in the wheelchair you or me so I want a regular manual chair that's it because your piss me off
One thing that bugs me as a wheelchair user is not an attitude, it's a thing people do, grabbing the push handles on my chair trying to 'help' me push without asking.
I literally went out for a "hike" with my sister and some old gay said I was so brave, I just turned to her and went brave or dumb because that area was not wheelchair friendly 😅
They are actually old jeans so I can't remember where I got them :/ but here are some of the jeans i have that I LOVE : bit.ly/3bF56fK bit.ly/3ibVDyS bit.ly/32bYJxk
Encouraging people with disabilities to adapt to ableism when the law (ADA) says they don't have to can be dangerous, and lead to injury or rapid disease progression, just from the stress alone. Promote Accessible Tourism. Every Customer Count$!!
Many people in chairs are strong as all get out. Their upper body strength is enormous. Are these statements from elementary school kids? Some are just insulting.
I have a question do you have something against people who use motorized wheelchair but I do agree with you on what you said about that I have accessible that can make you depend on inaccessible house like I said what do you got against people who use motorized wheelchairs it doesn't make them any less independent
Bradley, I never said I had anything against people who use motorized chairs. I have many many friends that use them. What my point was was that I have had many people say they can't get a manual chair because they were never given the option. So now insurance won't cover it. Motorized wheelchairs make it hard for people to get in and out of cars/travel (its not impossible) but I have had people tell me it sets them back a little. Thats all 👍🏼
In Holland is it a very expensive to be handicapped, not everything wil payed… If you do something is more expensive in wheelchair, we need special and bigger car and is this one older than 5 year nothing wil be payed and cars in Holland is a money cow of the government how bigger how more tax, gasoline is not to pay almost… vacation is very expensive to .. no live in wheelchair or chronic diseases in Holland make the government as always a normal person how hard work poor, real poor….
I disagree on your last point. Needing an accessible hotel room is NOT a learned helplessness. Also, for people with a chronic, progressive illness means things change. If I had a one time injury, that would be amazing
I recently saw a photo on Facebook of a young man in a wheelchair at a concert. People were lifting him, chair and all, so he could crowd surf! It was awesome! Something that was posted as a feel good moment, and there was someone commenting “look, he’s lifting his legs. He can move his legs! I’m turning this into a meme!” So many people just assume we’re all paralyzed! I have spina bifida, use a chair, but can move my legs and use braces and crutches to walk short distances. People all the time are shocked when I love my legs to situate myself or to stretch them out!
Don't know if you've heard of a guy called Aaron Fotheringham?. He was born with spina bifida (I was too) and works with Nitro Circus who do 'extreme' stuff like jumping ramps on bikes, or pretty much anything with wheels on it, he does it in his wheelchair!! I was blown away first time I saw it, anyway, sometimes I see comments on his videos of people saying "he moved his legs" or " he stood up!!" (He can stand holding on to something). I really think it's time there was a class at schools teaching about disabilities, maybe attitudes would change then.
Some of us were born with our disabilities. I was diagnosed with SMA when I was two and a half and I've used a wheelchair all my life. The "we're not intelligent" one also irritates me, which is probably why I was competitive academically growing up. I finished my undergrad a semester early and then graduated from my masters program with a 4.0, so yeah I hate that misconception.
I hate it too! I am also a life long wheelchair user with two college degrees and a boatload of accomplishments. When at a restaurant, have you ever had a waiter asking the person you are with what you would like to order as if we are not capable of answering this question?
@@devinwaggoner702 I can't remember having that particular situation in a restaurant, but I'm sure that would be super annoying.
Hiii I have sma too
I love that you mentioned that not everyone in a wheelchair is paralyzed! I use a wheelchair because I have chronic illnesses and when I stand up from my chair, people either look at me like it's a miracle or that I'm just faking it that I need a wheelchair. I hope that people get to learn a lot more about disabilities because of channels like yours and content that touches these type of subjects.
A misconceptions I hear a lot ''Well that means you can't have children'', such an annoying misconception. There are enough able bodied parents that cannot raise or care for their children. Why should our disability take away our right to have and raise children?!
I can't wait for another misconceptions video!
Hear Hear!
Great video, Chelsie. I had to learn a lot from my girlfriend who’s also a wheelchair user that I never gave a second thought about.
Super funny but that’s what I was doing today! I was in a full power chair, and now I am in a manual wheelchair, and I’m actually being fitted for something lighter so I can actually start pushing 😍 I got a life altering surgery two years ago that made me more incomplete and I’m getting things back through intense physical therapy, horse therapy/riding… Plus just throwing myself into a different situation so that I can adapt. Great information Chels! Love all of your videos lately! Seriously you are such a light. I was literally on welfare the first 2 to 3 years , it’s hard having a spinal cord injury. But I became so much stronger. Had to fight for everything that I have and things are finally starting to make sense.happy to be friends with you and continue to see your journey 💜
Thanks for covering ambulatory wheelchair users, and for showing the Rollettes!
I'm in the tailend of the 9-11 month process of getting my first chair, and I can't wait. I rented one for a week, and even though it was a type 3 (folding, heavy, too big, centre of gravity too far back to do wheelies so needed a friend's help when outside) without power assist, and my chair will be a type 4 (rigid frame like yours) with SmartDrive power assist, it was life changing. Shopping was fun again. I had an entire week where I wasn't randomly sitting on floors, and didn't have a headache (standing gives me headaches, triggers migraines, lots of other drama). I didn't have to worry about getting a seat on transit - I already had one. People were much more helpful - yet I need less help when using a chair than my canes or poles.
I have the "EDS Trifecta" - Ehlers Danlos Syndrome, dysauotonomia (main reason for needing a chair), and an autoimmune (MCAS). I'm also a dancer. I haven't done classes since before the pandemic / my conditions got much worse. Watching your videos has helped me a bit with the grieving process of not being able to take class again. ... I might be able to to the barre portion of ballet classes with some adaptions - maybe, but lyrical is completely out (too much changing in position). But I need a wheelchair to rest up for that.
The Rollettes are awesome!
I love your “assumptions” statements.
I use a manual wheelchair because I can’t stand or walk anymore, because my joints are really loose and can dislocate easily, so pushing is sometimes hard, but I hate it when people come up behind me silently and push me without warning.
There’s a small hill on my way home that has a beer garden opposite and so many people nearly get run over, because they see me going slowly up the hill and leap across the road without looking, to ‘help’!
Most of my body is affected by my condition, joints, muscles, my skin, my eyes, my heart, my digestive tract, my autonomic system...
Also, I haven’t had any assistants or carers since last year and I’m still managing, (not as I’d like, eg. I would love to shower, but I can’t manage to do it on my own, and it’s hard to hire someone when the worlds gone crazy, but hopefully soon!) to keep myself clean, healthy and well fed.
Intimacy, ✔️😊
I sort of, have heard of a friend that I used to shoot with who now uses a wheelchair, but most of the people that I know that use wheelchairs are online and I’ve not met them in person, and we’re not related.
Although I have three sisters and a couple of nieces that have the same condition as me, but are much younger so don’t need mobility aids yet, so this one might be true for me someday.
I can move my legs, and I can easily put my feet behind my head too!
One assumption that I wish I could dispel, is that I get what I need from the NHS (the national health service - in England) they only cover the basics. I don’t get any of my mobility aids for free, I pay for them, and some of them are really expensive so I save up and make sacrifices for them because they change the quality of my life so much.
Billie.
PLEASE don’t take this as hate, I understand some questions may seem silly and/or common sense but try not to be sarcastic or judgmental when answering. The only way for us able bodied to learn and evolve is by asking questions. If my question was mocked or I was made to feel dumb I’d shut down and never ask further. Someone’s sex life is theirs to share or not share but wondering if someone is able to feel during sex is a reasonable & natural curiosity. I’m just using that as an example, I’m not asking about your sex life 😂
totally agree, I always tell people that if I wasn't injured I would never know about any of this really.. so I always try and educate people on different things when it comes to how I live my life.
Thank you for making this video. It hits home for me. I’m 27 and in under 4 months I’m now a wheelchair user. I went from having 2 jobs, going to school and working out in the gym to barely being able to walk around my own house. It’s now been 6 months and I’m accepting it more & relearning how to do things. I’m still undergoing testing, doctors don’t know what’s wrong yet, but basically I have severe tibial neuropathy & the muscles in my right leg are atrophying. The point to this comment though, is that not all wheelchair users can’t walk, some can, like you said! And even if some can it doesn’t mean that they shouldn’t or “aren’t allowed” to. I have good days and bad days and just because I can walk around a house doesn’t mean I don’t need a wheelchair. Some days I can just bring my walker and walk around the store, others I need my wheelchair right when I wake up. The worst is when people say “I saw you walking yesterday, you’re just using your wheelchair for attention.” Or, “You don’t need a wheelchair, you’re not really disabled.” Everyone is different and all have different reasons for using a wheelchair, and I appreciate you sharing that. Thank you again for creating this.
Wow!
Thank you so much. I am an ambulatory wheelchair user. I have Elhers Danlos Syndrome. I can walk when absolutely necessary short distance and sometimes can use forearm crutches or canes to help me. I have stairs in my house and no power lift. I either manage it or go up backwards on my bottom. I am tough. My wheelchair make my life easier and more manageable.
Thanks for the shout out for us wheelchair users who can walk some. ❤️❤️
I am also disabled. I use a walker now, but in middle and high school I used a wheelchair and some people would just assume I was paralyzed and some people would talk to me in that baby voice. Including adults. I hated that so much.
Some people think that all disabled people are in wheelchairs or that it’s always obvious, but there are a lot of people with invisible disabilities or less severe disabilities, that should also be recognized.
Love it! Im newly injured and been adjusting to wheelchair life. Can you please do a video on your bowel program and how you manage to Cath sitting in a wheelchair? I feel like people don't want to talk about the REAL things we go through. Its like because its deemed "unclassy" or taboo to talk about but you know what, THATS REAL LIFE for wheelchair users.
That's so true. I am paralysed from the waist down and incontinence is a big issue for me. Chelsie, I would also love to hear how you manage things and how you physically navigate getting to the toilet and doing a catheter without help.
I'm a paraplegic from birth due to spina bifida L5/S1. People are constantly trying to help me push my cart at the grocery store (fine to ask, but accept the "thank you, but I've got it", don't persist). Also insurance when trying to get a new wheelchair is SUCH a pain!!! Again, I'm paraplegic from birth, there will be no improvement in my condition. I have to "prove" I need the chair every time I get a new chair. One time took me 7mths to finally get a a new chair approved and in the meantime injured my shoulder when my chair that was no longer adequate rolled from under me mid transfer. Absolutely loathe dealing with insurance!
Yes. I'm one of those that can't walk long distances. My max is being on my feet 1,5 hours or 6 km (it sounds much but it really isn't) for an entire day, no more. So for me I use a scooter ;-) Also, I live in Denmark and we have a very good welfare system where all doctor, hospital and medical cares are all free through taxes and you get free sick leave with a decent pay and a good pension if needed for disabled people. I'm even getting a handicap card which gives me 50 percent off all public transport and free zoo, cinema, museums etc etc - its a great country for people with disabilities. I wish more countries would adopt our system because it's really good.
I routinely shock people when I go through the self checkout lane, pull my power chair up and back in, STAND UP and check out. I have heard it all from "If he'd just exercise more.." "well!,... If he can walk why is he in a power chair?" and then when people stop by my home and see all the saws and the copious amounts of sawdust, I can see the accusations in their eyes. Been in a power chair for 7 years, was in a manual for about 10. went from a 5'11" 185lb body builder to a 350 pound diabetic with twin Titanium supports (hips)
I am not paralyzed but I do have sensory/motor issues. I have nerve damage my spine is compressing my nerves, and I can only walk for very short periods. I feel like lately my issues have gotten worse and I am using my wheelchair more and more. I was injured in the Marines and now I am paying that price. I prefer my manual chair, and I have an appointment for a power assist so I can get around easier. Thank you for putting this video out and not shaming ambulatory wheelchair users.
I'm a new ambulatory wheelchair user, and I'm learning things. People judge me alot though due to that I can take 1 or 2 steps and transfer like that. My legs do move my problem is that I have 3 severe forms of dysautonomia and I pass out with no warning. It's safest for me to be in a wheelchair especially with the weakness in my legs and syncope. Thanks for this video and including us though
Well done . I myself have cerebral palsy. I was born in 1972 so growing up I had adapt to many things. But I’m glad I did.
I love watching your videos it help for encouragement. My husband helps me but I want to do things my self like getting my self in the shower but it’s a tight fit and my power wheelchair is a little bit too big. And my manual chair is hard to maneuver
I agree with you 100% with your advice on a manual wheelchair and having your home be accessible from the start. When I got out of the hospital after my injury I had to live in a hotel for a couple of weeks because I was fighting to get my home accommodated. To this day it still hasn’t happened but I’m back and making it work.
I was injured two years ago in an accident; had nerve damage to my left leg and hardly left home because even with a cane, I couldn't walk very far without a ton of pain and numbness. Insurance would not cover a chair for me. Such is the healthcare system in the U.S. Fortunately, I've found adaptive activities I can do that don't require a lot of leg power (handcylcing, swimming), but things like wandering around a museum, shopping district, zoo, park, or other large spaces are a thing of the past unless the venues have scooters for people to use.
Girl you are so right, I’m disabled but don’t use a wheelchair. Some once heard me talking , and then he turn to me and said I didn’t know you were so smart...I was like what the heck!..
Wow!
Many people don't understand how much wheelchairs and other aids actually cost and that many of us have to come out of pocket for them. That's the one I hear the most. I have no health coverage and will be saving up for my daily use wheelchair for at least the next 5 years on my current income. I have a nearly 70-pound hospital-style monstrosity... I mean, chair... that I can't propel. It's like they think what happens is: "Oh, you're injured. Here's your standard-issue ultralightweight, daily-use wheelchair that is perfectly-sized for your specific body type and needs."
MHS / Medicaid just sent me a denial letter for a new set of batteries because "The set you had should last at least a year" I drive my chair on average (With GOOD batteries) around 15 miles a day. SLA batteries, anywhere from $200 to $400.... I love you Indiana!
@@JamesD92763 I'm in Indiana, too, and have been at the mercy of those programs for care. I no longer qualify because I make $100 too much monthly. It really is a painful catch-22. I understand where you're coming from, neighbor! I sure hope you can get your batteries replaced soon.
Thank you! I am a part time, ambulatory wheelchair user. I got sick about 7 years ago. It started off with passing out randomly. I ended up getting a pacemaker in December 2016 (I was only 26) while some things got better other things got worse. I was diagnosed with Postural Orthostatic Tachycardia syndrome (POTs) basically when I stand or even sit too long, my heart rate sky rockets & my blood pressure drops…causing me to drop as well. I don’t use my wheelchair in the house, but if I got anywhere my manual or electric wheelchair goes with me. The looks I get from people when I stand up🤦🏻♂️
I love this,
However some have difficulty using a manual. Using a power chair doesn’t mean we’re less independent.
OH, and my favorite of all the misconceptions: Hey, people... I'm fat and in a wheelchair, but I'm not in a wheelchair because I'm fat. AHHH!
I'm a C4-5 incomplete quadriplegic and I can move my arms and legs. I have full use of my right hand and fingers, I have control of my core and back muscles and partial use of my left hand. I can stand with assistance. I write stories on Reddit about my advisability and when I mention that I'm a quad I get SO many people asking "if you're a quad, how are you typing" which drives me crazy. And then there's people that don't believe I'm brain damaged because I don't "sound" brain damaged.
I was too weak when I was really sick but I didn’t want a power chair so I got a power wheels chair so it has power when I need it and if I don’t need it, I just leave it off. Bad thing it’s 78lbs. Then I got a fancy manual chair where I can teach/dance and instruct to seated classes. cuz you know when your dancing I used to constantly hit my elbows on the seat back. So now I teach in this chair and it is perfect. Well I haven’t taught a disabled class yet but I am doing videos for our REFIT®️ instructor group cuz just like you, our bodies aren’t the same. This way the other instructors who might have a participant with mobility issues will know some simple things like if your participants are in the back row, they aren’t gonna see anything but butts😮 😂 that they might not think of like when Been doing it since 2014 as a moderator for folks who would follow along with a bunch of songs. Then in 2015 I officially became a seated REFIT®️ instructor!
Love this video! I'm a C-6 quad my first chair was a manual wheelchair but unfortunately overtime I developed a muscular dystrophy disease call myasthenia gravis, which made my arms too weak to push by myself so I had to use a power wheelchair
You have a lot of the same opinions as I do. Since I've been injured I've always said it's to adapt what's around rather than adapt things for you.
I'm a C8 quad, 21 years post, and I've always thought it best to make other newbies figure it out, rather than coddle to their "needs". That's what I did and it made me completely independent.
Great video.
My wife and I are both in chairs. She was born with cerebral palsy and walked on crutches when we met. I earned a chair by working hard not smart plus some problems I was born with. We both started in manuals and now both use power. We get a lot of dumb comments. I even saw where a chair user on utube said anyone in a chair with dirt on the bottom of their shoes was a phony. He said if you could stand it meant you didn’t need a chair. I have to use a 4wheel walker and my wife uses crutches around the house cause our house is too small to use our chairs. My own dad and I believe some of her family think that means we don’t really need chairs when we leave the house, that we just use them because we are too lazy. She has 2 torn rotators from walking on crutches her entire life and they always wonder why my legs are always torn up. When I tell them it is from getting up after I fall they don’t get it unless they see me trying to get up. I proved the doctors wrong twice and my wife also has a fused knee from walking around on a broken knee and it wasn’t till I took her to my doctor that she could get anything done other than surgeries to remove loose bone fragments. We hear a lot of weird crap.
I'm young and carry a cane for support with my disability you our truly a inspiration to me keep your head held high your awesome ♥️
Just came across this and some of these misconceptions really hot home for me like if people had their way I’d not go out coz I’m blind in one eye and I’m a wheelchair user it’s crazy how much people think disabled people should be wrapped up in cotton wool when we are just as capable as able bodied people but just need to work a bit harder at times especially if you’re a spoonie like myself
Yaaaas. Thank you for the walking thing. I have lupus and have a combo walker/transport wheelchair (because I dont need a wheelchair in my everyday life but in like heavy activity days like a zoo outing, so i don't need to pay for a special wheelchair especially since my hands and wrists are most affected)
Also the people I know in daily wheelchairs party more than I do because im that #introvertlife haha.
Also suggestion/misconception that's applicable to ambulatory wheelchair users: you're in a wheelchair because you gave up.
Like no.... im accepting my limits and finding a way to enjoy my life more fully and ration my energy supply so I can do more that I want to!
Yes, i'm time-to-time wheelchair user. And starting of using wheelchair wasn't give up. It was step up. Now i can participate in much more activities and spend more time out if home.
@@elenasayapina6100 Yes! I was thinking I'd have to give up my dream of a disneyland vacation, now that I have a walker/wheelchair I feel like i can plan something like that again! (After COVID of course)
I have cerebral palsy and I have a power chair and a manual chair for when I go out of town, and I am so inspired
7:43 Thank you I have Secondary Progressive Multiple Sclerosis I can walk short distances. But any distance I need my wheelchair. I'm college education and I have a good paying job. My disease put lesions on my spinal cord and I have a lot of inflammation in my spinal cord. My legs are very weak But my arms are not affected by my disease and are really strong from pushing a manual wheelchair. Isn't it funny that the device that people think makes me weak is why I'm strong. 😅 Hell no are things covered by insurance or the government. I paid for my chair out of pocket. Insurance would only cover a hospital chair and the wheels had no traction. I'm short so the back was to high and I had other issues with it. I love my wheelchair now it's a Ti Lite Aero Z custom fitted to me and there is a world of difference between the two chairs. Insurance can suck it. Also Government isn't paying for a thing when I had a full time good paying job.
Great video, but I might disagree with you somewhat about wanting/needing an accessible house. I have lived in plenty of places where it was not completely and easily accessible for me (I use a wheelchair) and although I can usually adapt to most situations, I prefer to have anything that isn't easily accessible (bathroom doors, steps etc.)
Modified to my needs rather than having to adapt to it.
I agree especially for newly injured paras.. it helps people become creative and comfortable in other spaces..
love your outfit you look good in yellow yes sometimes people are just misinformed about disability’s we don’t all fit into the same square box another great video yes would be nice to twitch my nose,bam the house clean
I had a spinal cord injury and can walk, but it's better to wheel since it is not as painful and I can go fast. I'm eleven.
Why is a manual chair better than a power chair? From a completely uneducated outside perspective, it seems like the power chair would be much more convenient?
Love this video btw❤️
A very famous one:
"All people who use wheelchairs can't walk" or "Omg they just got out of their wheelchair!!!! They're faking it! They can walk!! Fake!!!" People can be so stupid sometimes...
Can you order the kind of wheelchair on line? I’m assuming the manual wheelchairs isn’t the same. I have a manual wheelchair that cost us 130 dollars. I also have a power wheelchair that folds up and supposed to fit in the trunk of a car. But the trunk has to be big.
The house one, I've lived in the same house since I was two, it's two floors, nothing in it is what you might call accessible but like I said I've been here since I was two, I've adapted to it, I bum shuffle up and down stairs, I shuffle around upstairs, the bathroom isn't accessible, normal bath etc, I've just learned my own system of getting around. I am looking for something more accessible though, only because since I hit 40 I got lazier lol
Of coarse your strong you have to push your own weight and the chairs weight around all day & you lift yourself when you transfer that takes strength 💪 girl
I have a debilitating nerve damage current in legs I chose a manual wheelchair over a mobility scooter as in the UK there so many regulations over type that can go to certain places plus I wanted to keep as active in my arms that are ok at the moment
One of my most ask questions is do I know someone who is in a wheelchair even if I have never met them. I also get they think I am someone else then I am and call out that persons name
The insurance thing, Im in the UK, we have the NHS, which I'm not saying is perfect, it isn't, but most things are free, including my catheters, it blows my mind that the U.S. has the system it does.
Love your Videos.. I don’t like my Wheelchair either.. 😂 😆 😂 just got mine serviced & still having issues
I am from Germany which is very backward as to handicapped persons. Those prejudices are simply rubbish! The prejudices mentioned seem to come from stupid and/or ignorant people! Why in the world should wheelchair users not live normal lives?! The mind and in most cases the upper body are still working!
It seems nevertheless that prejudices are less widely spread in the US than in Germany. I have been fascinated by the series "push girls" where I have seen yourself as well. In this series, wheelchair using persons do not appear as poor and miserable beings, but active and attractive women.
As a little boy, I heard of becoming paralyzed as horror scenario. I have heard something like that:"Be careful! Or do you want to end up in a wheelchair?!" Of course, it is not an easy fate to become paralyzed, however, there are even more tragic fates. As an able-bodied person, I could imagine living as a paraplegic or lower quadriplegic. However, I imagine high quadriplegia or developing towards total immobility by diseases like ALS or steadily furthering muscular atrophies to be truly awful!
In "push girls", you had a breakdown over remembering your walking years. Do you have such days, yet, or has living as a paraplegic become your new normal that much that your walking life is nothing more than a distant past that you do not wish back?
Getting paralyzed is apparently going along with the road from grief and denial towards acceptance. However, I have read of a few persons who did not break down emotionally. Is it truly thinkable that a newly injured person reacts on the news by thinking at once of adjusting to the new life instead of anger and grief during the first time? Do you yourself know, perhaps, somebody who has at once or very quickly accepted his or her fate?
Thank you very much for your answering comment.
Me getting pulled behind car rather then putting my chair in it to cross the parking lot...guy yells out "thats not safe" my reply" im already in a chair what else will happen"
Some of these questions or statements are just dumb. People are disabled, not dead for crying out loud. Girl, you have patience of steel.
I'm a Quadriplegic C5,6,7 and in a manual chair.
I dont get the need to have background music??!! Thanks for educating us Chelsie
Do you have a problem with time management with Cathing and drinking enough in a day.
its something I am constantly working on but I got bladder botox which has been amazing
Well i am in a wheelchair and i have spina bifida and i have 0 feeling in my legs
What do you mean by people don’t get to try if they’re in a power chair and not in a manual chair?
Great video I want to ask, do you use a urinary catheter and which method do you use? Thank you
I use the CURE medical twist catheters
How does the pregnancy pillow help with sleeping? What stretches do you do before you dance if you do stretch?
Awesome!
On 4:00 on what you talked about it is very true. Im sci c-3 c-4 in 2018 my therapist ot was telling me and telling me to get a power wheelchair I kept on saying no I want a regular manual chair I want to use both of my hands and arms to row myself. And she kept on telling me to get a power wheelchair and I got fed up with it. So I told her straight up who is going to be in the wheelchair you or me so I want a regular manual chair that's it because your piss me off
thats great, sometimes you have to fight for what you want
One thing that bugs me as a wheelchair user is not an attitude, it's a thing people do, grabbing the push handles on my chair trying to 'help' me push without asking.
Great Video!!! However, I think you missed the one where all them abeled body people think we are all in diapers all the time... lol
Wow!
U r an inspiration , God bless you
This video was on point
I literally went out for a "hike" with my sister and some old gay said I was so brave, I just turned to her and went brave or dumb because that area was not wheelchair friendly 😅
I am partially paralyzed right because of brain cancer I had in 84 and left because of recent strocks
There are no links to the other girls mentioned in the video.
just added their IG handles :)
can you link the jeans?
They are actually old jeans so I can't remember where I got them :/
but here are some of the jeans i have that I LOVE : bit.ly/3bF56fK
bit.ly/3ibVDyS
bit.ly/32bYJxk
Awesome video
Bonjour comment faire la traduction en français?
Encouraging people with disabilities to adapt to ableism when the law (ADA) says they don't have to can be dangerous, and lead to injury or rapid disease progression, just from the stress alone. Promote Accessible Tourism. Every Customer Count$!!
I love your outfit! Where is it from?
Hi love, the shirt is pretty old and the jeans I believe are from a random store! sorry!
Alguien me me explique este video en español ????!!! 🙏🏼🙏🏼🙏🏼😅
You got it, girl!
My legs are working. I just don’t have balance.
What type of wheelchair do you have?
I have a tilite chair and a box wheelchair
How did you get put in a wheelchair or were you born with disability. If you don't mind my asking
Many people in chairs are strong as all get out. Their upper body strength is enormous. Are these statements from elementary school kids? Some are just insulting.
Hey Chels I gave CP but I feel my legs....
In this video, your biggest handicap is your pants. Holy cow (actually, holey pants). Cheers!
I have a question do you have something against people who use motorized wheelchair but I do agree with you on what you said about that I have accessible that can make you depend on inaccessible house like I said what do you got against people who use motorized wheelchairs it doesn't make them any less independent
Bradley, I never said I had anything against people who use motorized chairs. I have many many friends that use them. What my point was was that I have had many people say they can't get a manual chair because they were never given the option. So now insurance won't cover it. Motorized wheelchairs make it hard for people to get in and out of cars/travel (its not impossible) but I have had people tell me it sets them back a little. Thats all 👍🏼
@@ChelsieHill okay I understand thanks for explaining it
Do claw clip totorial.
I cant believe some of the things that were even on there. You would think it was common sense 🤦♀️🤷♀️
This might come out as insensitive but i want to learn the backstory of your condition sorry if this hurts your feelings
In Holland is it a very expensive to be handicapped, not everything wil payed… If you do something is more expensive in wheelchair, we need special and bigger car and is this one older than 5 year nothing wil be payed and cars in Holland is a money cow of the government how bigger how more tax, gasoline is not to pay almost… vacation is very expensive to .. no live in wheelchair or chronic diseases in Holland make the government as always a normal person how hard work poor, real poor….
I disagree on your last point. Needing an accessible hotel room is NOT a learned helplessness. Also, for people with a chronic, progressive illness means things change. If I had a one time injury, that would be amazing
☕🍓🍓
Hi ❤ 😊 love ❤😊😊❤
I have CP
Cecilia12 ♿ qqwwuiero 📱📱📸📸