Watch out for part two as we are going out and about, as if its a first time in a wheelchair. Im going to show you where I would go, or recomend your first time to be. Where did you go in your wheelchair for the first time? Last Video: ua-cam.com/video/W1eSxzeAG9Y/v-deo.html Stupid things People say about my disability ua-cam.com/video/pa2-_uaoBrQ/v-deo.html Why your comments to disabled people Hurt ua-cam.com/video/nPk8xdEHJ5A/v-deo.html I became a wheelchair user & this shocked me the most ua-cam.com/video/5nl2tyCGAIU/v-deo.html
I’ve thankfully never had that happen even when I don’t park with my parking pass (before I had it or when there’s no spots) but I always made sure to part very strategically, like by cart stalls where I’d automatically have more space.
I'm not a wheelchair user, but the first time I spent a day around a wheelchair user the things that stuck out to me were how much people stared, how much FURTHER the disabled access routes were around the university campus (somewhere that claims to be very disability friendly), and honestly how much I felt like I didn't know what to say or do. I've tried to grow a lot since then based on that experience, because I want to be open and accepting and not make the other person feel like THEY have to make me feel comfortable. Another thing that gets me - my partner is disabled (non-wheelchair user) and they had a wheelchair accessible bedroom on campus. But this room had NO STORAGE. It had one rail to hang clothes on that wasn't even tall enough for his shirts, one drawer, and one set of shelves. No storage in the bathroom. We ended up buying a couple of storage units for him, but even that wasn't enough really. Don't people know that disabled people (in general) need more stuff than able-bodied people, not less??! Sure the room had floor space to wheel around in when it was empty, but good luck keeping that room tidy with nowhere to put all your things🤦
I'm off on holiday tomorrow and we've hired a wheelchair for the first time, because of chronic pain and exhaustion, so that I can do more of the family outings without being in so much pain and wiped afterwards. I've been very stressed about the whole thing even though i know its the right choice for me. Videos like these have helped me get to the point where i am willing to try using one rather than a blanket NO all the time.
I hope your holiday goes well! The wheelchair might take some getting used to (I say from my own experience), but it's definitely worth it for saving energy for other things, especially on holiday. Nothing worse than having to bow out of half the holiday activities from sheer exhaustion and pain if you can avoid it.
I went on holiday to Australia and hired a mobility scooter that fit in our hire car. It meant I could actually participate so much more in the holiday and save spoons. Highly recommend
I used a courtesy wheelchair for the same reason at the Royal Ontario Museum (Toronto, Canada) on my birthday recently. I was so awesome! Kind of the best birthday ever. It was the first time in years that I was out in public, not dizzy, not having to calculate where the next place to sit is and when I might need it, and so much less pain. I hadn't realized how tired all of that and dealing with crowds and people jostling me (even with my bright purple and pink canes) was making me. I hope your holiday goes well! If you have time before you go, both Gem and Richard on Wheels2Walking (UA-cam) have wheelchair skills videos.
I did this for our recent holiday and honestly it made a huge difference. I was really glad I did. Most hires I've had have been push only - I did find I needed to have a conversation with the person pushing me about expectations for how we managed that, as it was a new aspect of our relationship and a new trust for me to put in them.
Being in a wheelchair, you learn quickly that you have to adapt to just about everything, reaching for items, finding people who are willing to assist you, dropping things and figuring out how to pick it up, bathrooms, kitchens, stores, eateries, get dressed, showers/bathes, sidewalks are actually sloped, learning to steer a wheelchair, wheelie pops on curves, bumps, and so on, staying alert when other shoppers aren't, there's just a lot, it's kind of a different world/life style, if you can walk a short distance as in getting a wheelchair and others wondering why you need a wheelchair, people not realizing how much more effort it takes for a wheelchair user to do the same task
I realized two things. First, how difficult walking had become for me. Movement went from slow and laborious to relative ease. I am not exaggerating when I say it was liberating. Second, that hills suck. I had no idea that even the slightest hill would increase the difficulty so much. If people stare, I haven't really noticed, because I feel so much more happy and complete when using it. Thanks Gem for your excellent channel, I've learned so much.
I have EDS and I've had to use a wheelchair before after knee surgery. I've also got a walker, a rollator, and a cane. When I use my assistive devices, they help me SO much. I've been relying on my rollator more for longer trips and it gives me the energy to visit museums again. Such a blessing! But when I first had to use assistive devices, I was so aware of the staring. The cumbersome-ness of my rented off-the-rack wheelchair was absolutely annoying. Now I'm older, I don't think about the stares nearly as much. Lots of people give me looks over my use of handicap parking. Not as many have given me looks with my rollator. Actually, some folks have been really kind about it (ie. holding open the bathroom door, etc). 😊
Honestly my fav thing about being a wheelchair user is answering questions from curious children. I love when their questions and comments come from a place of genuine curiosity, and knowing that I am at least a little bit responsible for properly educating them on disability makes me very happy. Very young children often think my wheelchair is a pram/buggy and point it out to their parents, which is very cute. Another child (maybe 4 or 5?) asked me if I used a wheelchair when I was in my mummy’s tummy! She was so fascinated by what I had to say, lol
I agree - one of my early jobs after college involved writing an accessibility guide for my local town. I wasn't disabled then, but it certainly opened my eyes as a young adult as to how unnecessarily difficult 'normal' life was for people who had mobility issues. Certainly taking the time to explain to youngsters what it's like for you is very helpful - that's the sort of education we need - sharing the knowledge when & wherever possible, so they grow up understanding that Life isn't the same for everyone and not to take for granted the freedom they enjoy with healthy faculties - they could go in the blink of an eye. Knowing some of us have to work very hard to get where we want to go, might aid these kids to grow into more compassionate adults who will facilitate success for others, rather than erecting inadvertent barriers due to ignorance - making life better for all. Keep well.
I love this type of video! I have a progressive neurological disease and was in my early 50’s before I got my first manual wheelchair. My husband, my mother and I were going to a casino and I used the wheelchair for the first time as it was huge and I was worried about fatigue. We were in line for the restaurant and my husband kept bumping into the man in front of me and when he turned around to look he looked at me! It happened repeatedly and I started laughing. I warned my husband at every outing please don’t run into anyone because they think it’s me. Now I have an electric chair totally under my control and I am a fantastic driver: )
I’ve had ME/CFS for 45 years - my mobility has deteriorated in the last year and so yesterday I got a beautiful, refurbished power wheelchair. Today I’m upset because I am nervous to go out in our village and be seen. So I found your video which has helped a lot! I intend to go out later but definitely today. Thank you.
I haven't gotten into a wheelchair - yet, but I suspect it might be coming. However, in the 1980s I was walking into work and talking to a lovely co-worker, who was in a wheelchair, and had been all her life. This man was coming out and stopped and asked: "Why aren't you pushing her?" We looked at each other, and then the man. J said: "Why would she do that?" and I asked, pretty much at the same time: "If she wanted me to push her, she'd've asked." J had gone out to exercise during lunch, wheelchair users have to exercise just like non-wheelchair users.
I like this style of video from you. I’m recently back to work as a teacher, in a wheelchair. The teenagers stare some, but generally so far they are going out of their way to help me when I ask it. My first memory out in a wheelchair was out at a restaurant and I hadn’t mastered all transfers yet and I was still in my loaner chair, I didn’t fit well at the table. Made for an awkward dinner. Since I’m ambulatory teaching in my chair enables me to have energy to walk for other areas of my life. Convincing my family of this has been hard. I know in my heart I’m not likely to walk full time at school again, but they seem to think I’ll get there with time.
My chair was the best decision ever. I can so much more. Not to mention the improved independent. If I need my crutches I’m going to use my chair because I’m so much more independent
I kind of cheated, my other half has Cerebral Palsy, so I had gone out with him with his wheelchair MANY times over the years before I became disabled and needed a wheelchair myself. I think though what hit me the most was how tiring pushing the wheelchair around the shop was. He always made it look so easy.
I have been medically gaslit about my conditions and now I find it hard to realize that I deserve to use a wheelchair too. My legs may work but the pain, exhaustion, and possibility of a joint dislocation isn’t worth it. Wheelchairs are such a vital part of so many of our lives and I’m forever grateful that they’ve given all of us our independence back!
Something I realized when I first started using my chair was how important it is to make the chair fit you (as much as possible). I'm only 5'0" tall, so having armrests made it very difficult and painful to push myself. Took them off! Also, since the footrests didn't adjust well enough to support my feet well, the only thing they did was make it harder to get thru doors. Took them off! Finally, not having a decent seat cushion not only makes your bottom and hips hurt, it can make your posture wonky and give you back pain. I was given a hand me down gently used gel cushion, but it's not the right size. Took that off too! I can't afford a custom wheelchair right now, but I can't afford to risk pressure sores, muscle aches, and worsened fatigue by using an "off the shelf" chair. Do what you can to optimize your chair for your needs.
While I was in the hospital after my leg amputation, the rehab people gave me a piece of very stiff, tapered foam that "flattened out" the sag of hospital-style chair seat. They added a piece of that "egg-carton" style foam about 2 inches thick at the peaks. That was okay when I was mostly in bed, and not in the chair much. When I got out of the hospital, I added one of those cushions with a coccyx cutout, about 2 inches thick (< $20 at Walmart). Now I'm in the chair at least 14 hours per day, sitting on about 4 inches of "medium" foam. It's not luxurious, but it's "okay", and I only recently got my first pressure ulcer after over 3 years (I put a fold towel on top of the cushions to prevent sweat and dirt from getting on the cushions, and I think I put a crease in the towel)
My first time out was to the library. Our library is enormous and very accessible. It was a little daunting at first; I still have a hospital-style wheelchair because it's what we can afford, so it was bulky and difficult to get in and out of our vehicle, and near impossible to self-propel any distance. My husband did everything he could to make it an adventure, and he made it a great experience by adding life and fun to it. :)
Thank you for this video! I'm getting my first chair after fighting against my disability for years and this has normalised it in a way I really needed 💕
Really love what you and everyone else shared in this video. I think for me, using a wheelchair for the first time (at the zoo) was a bit easier because I'd already been using a cane for a year, so I had gotten use to a little bit of staring (I just didn't notice it really). The most noticeable thing for me, because I'm an ambulatory wheelchair user, was how much it reduced my pain and fatigue doing an activity. That was such a relief to know I could do things I love without being stuck in bed for days later or stopping because I needed to sit down every few minutes.
Yes, this is something I hadn't realised - I keep thinking it's me being a wuss. But actually I could probably do most of what I want to do if I just got myself into a wheelchair!
First time I was using a wheelchair I learned two things. One, self-serve soda fountains are not reachable, so I had to get someone to get me a soda, which kind of ruined the point of self serve. Two, that when in a crowded area I couldn't really see anything and was like wow, I sure can stare at a lot of butts I guess. A few times later I learned that even if I find a good spot to watch a parade, rude people will look at me, then immediately stand in front of me so I can't see because they know I can't stop them. Basically, the things that were negative were all down to other people. The positives? I could get around in way less pain and had way more energy for other things! Overall? Wheelchair use is definitely worth the few downsides.
After so many of your videos, when I went on vacation and I used a mobility aid in a very busy public place, it made it so much easier. Now that I finally made the big purchase for my own, I am excited but nervous to go out in it. But I know your videos and this whole community has helped me feel confident!
Due to the slow progression into my disability I was better equipped to handle the reality And now I see it as an opportunity to let strangers help all have been glad to assist me Have a day love 😍 from TEXAS
The first time I went out on my own, I took the bus. I had no idea what was going to happen. But all went super well. The drivers were very professional and helpful. Some people at the store kind of stared at me. But others who were also in wheelchairs waved at me with great joy! At one point I was going down the sidewalk and a mother with a child in a stroller was coming in the opposite direction. The child looked at me up and down. Then he gave me a huge smile and waved at me very happy that there was someone else on wheels! The mother and I just burst out laughing, it was precious.
New user, loving ❤ the honesty of your videos. My first time out, I was NOT prepared. All the wrong clothes, didn’t think to call ahead to inquire if my destination was actually accessible to a chair user, got stuck on a curb, got stuck in the toilet couldn’t get transferred out of the chair and onto the commode, soiled myself , didn’t have clean clothes, or diaper wipes, etc. had a complete melt-down. I can sorta laugh about it today, it still makes me cry.
The place I worked for my first year out of college, there were a couple of manual wheelchairs (belonged to the facility, so not anyone's personal chair) that we would sometimes mess around with for fun if we had some time at the end of our shift after finishing everything we needed to do. It was there that I realized that steering a chair is not nearly as easy as it looked, and that it takes some getting used to and practice to do it well, and also that going up even a slight slope is way harder than you'd think it would be. The first time I ever actually used one for myself, thankfully there weren't a lot of other people around (so less chance of running into someone on accident), but I still had a lot of trouble pushing myself (it didn't have removable armrests, and I'm short enough that they got in the way big time), let alone steering, so when we got to the piano and harpsichord room at the National Music Museum in Vermillion, SD (that was the first place I used one), I had my mom push me because I didn't trust myself to be able to steer through what appeared to be really tight spaces between them without accidentally hitting any of them. We were there for about 3 hours - with standing, my legs were giving out on me after less than half an hour, but once I switched to the courtesy wheelchair they had, I was able to go the other 2 1/2 without any issues (other than the aforementioned). I've had my fair share of staring, people being downright rude, accessibility issues, and weird/stupid questions (including the "how are you so happy?", and I made sure to educate that person because she meant it well but genuinely had no clue - "if you went from not being able to get out on your own to being able to go wherever you wanted without help, you'd be happy, too"), but it's the people who have known me for several years saying "glad to see you upright/walking" that pisses me off, because while I know they mean it in a good way, they don't realize that it's totally uncalled-for and dismissive - just because you see me walking right now doesn't mean I'm actually doing any better than when I'm in my chair, because what you can't see is how heavily I'm leaning on this shopping cart on order to just stay upright in this smaller store when 15 minutes ago I was using my chair in a store that's 6 times the size - I make sure to explain that just because they see one thing doesn't mean that the reason they think that it's that way is the real reason: there are a bunch of factors that go into the decision of whether or not to use my chair. To be honest, though, without me even trying to ignore it, I rarely ever notice the staring, and that's been true from the very beginning - I knew before I ever started using a chair that it would happen (and it does, a lot), but I was surprised at how little I actually notice it; only a couple times has it been bad enough for me to actually say something - the first time, it was someone I knew who didn't realize it was me because it was dark out, and the second time was a grocery store cart collector who stopped and stood staring while I was putting my chair back in the car - I don't think he realized that you aren't supposed to stare, even in general, until I asked him directly if there was a reason he was just standing there and he said there wasn't, and he continued to stare for a few more seconds before moving on. Ever since I started decorating my chair, though, I've noticed that far fewer people ask stupid questions, and instead more often comment on the accessories I've added to it (you mentioned this in one of your videos a few years ago, Gem) - I've got lights on the front (white), sides (colored string lights on the rear wheels), and back (red) because where I live doesn't have enough sidewalks (and on my street the ones they do have are uneven) and even fewer curb cuts (the average number of curb cuts in any give intersection anywhere in my town except the main road and the streets one block north and south of it is 1-2, even though almost all of them are 4-way intersections), so I'm in the street a lot of the time when I'm out at night, and there aren't many street lights (gotten a lot of comments about the lights, especially after dark, including one little kid, probably 4 or 5 y/o, going "Look at that!" as I passed his house in an "oh my gosh that is so cool!!" tone of voice); I also have pushrim covers and spoke skins that match the frame color, as well as a cup holder that matches my chair's hardware color, but the spoke skins are the only accessories that don't serve any purpose other than the "cool" factor, I got them purely because I wanted to - I use the cup holder every single day (I got the cup holder a couple weeks after I got my chair, and in those couple weeks, I found myself keeping trying to put my drink where my cup holder now is), and the pushrim covers are to increase the size and grip of the pushrims because I have a hard time gripping them, even with gloves on, because they're so narrow and slippery. It just happens that the pushrim covers, spoke skins, and string lights match the frame color, and everything else except the tires (hopefully that will be remedied shortly, though not for the matchy matchy factor) is black.
I just recently got a wheelchair and I haven’t been out yet but I’m excited because I been mostly in my room due to lupus and Pots… so I’m excited but I’m nervous in a way too because I know people will look, but you know I’m doing this for me…and I know I need a wheelchair because I get dizzy and have black outs… so it’s a form of self care I’m doing something best for me!
My first time really using my rollator for any length of time, I was attending a conference. I made it through two whole days of classes and midway shopping, on cement floors, and also wearing my AFOs, with so much less pain and fatigue. I was on my own, and really didn’t encounter any negative comments. I opted not to use it at my class reunion (didn’t want questions and gave in to social stigmas) and regretted it almost immediately! When I visited a tourist attraction was the first time I encountered comments, and it caught me off guard. One of the guides told me how proud she was of me “still doing things despite my condition.” Things have deteriorated with my health since then, and there are times a wheelchair would be the only way for me to do things and go places. My doctor won’t write a prescription for a custom wheelchair because she says if I “sit down I’ll never get back up.” So, I’m stuck with clunky, heavy chairs, if one is available to rent on site, that have to be pushed by someone else. My family do not know how to maneuver a chair! I’ve found myself just choosing not to go places rather than fight it.
My first time out in a wheelchair was the day that the NHS dropped it off, no lessons no instructions and with the uneven ground was difficult to keep in a straight line, the staring from people didn't bother me. I was using a mobility scooter and 4 whelled walker but because of my cronic clonus and spasticity in my legs I was falling to the floor all the time. My wheelchair has given me back a bit of freedom but I have encountered many problems, one being WAV (wheelchair accessible vehicles) licenced black cabs. I made a video on my channel about my bad experience using a prebooked black cab. I was refused help, had to crawl in the taxi on my knees, my children had to load my wheelchair, wasn't shackled down, chair tipped, I had a clonus spasum and had an abusive cab driver.
I am always amazed, to this day, at people's inability to understand that just because my legs don't work properly doesn't mean my intellect has been affected.
I have started using a walker for longer stints out and about but am having a hard time justifying this with my family. "You're so young (64), have you seen the doctor (working on it) and similar comments cause me to not plan much of those kinds of outings with them. Fortunately I didn't have this problem with my half-sister who didn't know me that well. She just accepted that is what I need. Sometimes strangers are easier to deal with than family.
one of the things thats helped me with the stares is giving them something else about me that i have more control over to stare at, be it makeup or clothes or accessories or whatever else.
Super cool to see you doing your chores, motivates me to do mine even though it is harder now that I am in the wheelchair … I need to do what I still can hehe.
At first I was only using my manual chair for shopping trips to bromley or Orpington and hospital appointments then for long trips like going down the coast for the day after a while I needed it full time I now use a tip n space electric wheelchair as I can no longer sit in a normal chair the physical therapist saying I needed to use a electric chair was the best thing I was no longer struggling to move the chair and had a lot of freedom
At first I was scared and embarrassed to use my wheelchair. Now I go around usually without a care in the world regardless if people are looking at me. Sometimes get the people not looking where they are going, blocking or grabbing my chair without permission, which straight away I always sternly tell them to let go of me. Will say that one does get me really riled up as I am also autistic and really do not like people in my personal space or touching me without permission. I do tend to get a bit freaked out and uncomfortable when it happens.
I am not sure it was my absolute first time but one of the first times I went to a clothing store with my aunt. The salesperson asked my aunt if she wanted to put me "over there" while she looked around. We said it was me who wanted to shop and immediately left. It didn't make me feel hopeful for my future. About staring if I catch someone giving a prolonged stare I stare back.
I am 75 paralyzed war veteran so I go to the Veterans Administration Hospitals. I have trouble with my wheelchair because of weight, but they won't give me a lightweight chair. I took somethings off of it. What bugs me is the spring loaded doors. I have alot of people who are eager to help me. Never realized that there were so many especially young folks and other aged people who are willing to help me...
Okay so, the first thing I noticed was how much more I could do, like when it came to staying out with friends. The next things I found out was how little support my family I was living with had, how to load my chair in my car the best way for me (my back seat works best for me but I’m ambulatory and can load and unload my chair myself… my trunk in theory would be convenient but is too small.), how much easier getting into the bathroom at my main grocery store was (seriously heavy doors, but easier than opening it on crutches!), and every uneven bit of pavement in my town everywhere I frequented. I’m also learning how to pack my car for road trips with my chair and thankfully lately I’ve been able to just walk or use crutches when out of the car on pit stops but I will need to learn how to pack when I can’t do that as well….
My first time out I went to a store I had wanted to go to but I never had the time, I bought a headband that has kitty ears and yes people stared but in a different way, they smiled and kids would come up to me to say I like your ears. Our driveway is a problem because it is so steep get up the can't get up that hill I wish we had a flat driveway, it is so steep I can't go on it by myself it is irritating.. I hope your days are filled with joy and love.
I just wanna say thank you for making the videos you do. I’ve been having problems with my legs and issues with chronic fatigue for a few years now and because of you I’m finally working up the courage to speak to my gp today about mobility aid options that aren’t my walking stick. I’ve been collapsing a lot for both reasons and it’s getting scary at how bad it’s getting and at the fact I could drop in the middle of a road one day. I’ve been worrying about it for months, working through a whole host of anxieties like am I just being lazy or attention seeking or what will others think of me and I’m only 21 I’m too young to be disabled let alone potentially use a wheelchair. It took me long enough to start using a walking stick. And that’s not even getting into what it means for my chosen career. It feels like admitting defeat, that I’m admitting I need a wheelchair. I’m studying production design. I want to build sets for a living. I can easily design sets from a chair but physically build them? But again, because of your videos and the videos of others I’ve been working through the insecurities. I know that if it helps it helps and other people can stuff their opinions. Using a wheelchair at a young age isn’t wrong. I can do whatever I set my mind to whilst in a chair if I have the right mindset and support. And I thank you for teaching me that.
Hi Gem i just so absolutely love all of your beautiful videos so very very much you are such the most sweetest beautiful gorgeous woman ever in the whole wide world i love you Gem.
I got really depressed when I first encountered my disability, that was many years ago,which I can't remember what happened when I first went out in it, but now I love going out in my wheelchair, actually I have 3 wheelchairs, just incase one breaks down you can never have enough wheelchairs 😂. Really enjoyed your video thanks 👍👍
Loved your video. I'm in my 70's and am eagerly awaiting my first chair, hopefully next month. I'm thrilled I found your video before embarking on my epic journey. Cheers
As a disabled service dog handler. I get the staring part. But worse, because no one expects to see a dog in a grocery store, waterpark, restaurant, theater etc. Then a lot of other problems was petting, calling, and photos.
Take a small hand pump for the tyres, what's OK inside is not OK outside (you need your tyres at the max) oh and be aware that everyone will stare over your head and talk to the person with you. But people will almost fall over themselves to help.
I'm ambulatory. The stares make me panic and mess up my steering or whatever else I'm trying to do, so I just look like a clutz. I hate it. Also, bumpy sidewalks, no drop curbs having to double back, all the boring black and grey colours of every device, all the extra planning ahead which brings extra anxiety, the stupid piddly little horn sound on all of them, the fact there's no one chair that can do it all (folds, lightweight, snow, gravel, comfy), I'm in Ottawa and flying to Vancouver with family and my chair in October. Soooo nervous. it just adds extra onto the nerves for packing and travelling already. Doorways not wide enough you have to be soooo precise with steering, automatic door buttons inconveniently located miles from the door or none at all. It's all hard. Kudos to those who deal 24/7.
I'm a part time wheelchair users, mostly where I have e to do a lot of walking. I don't notice stares honestly but I had to get over being embarrassed to use a chair when I can walk. I don't consider myself disabled per se, as I can walk most of the time. I suffered from a partial knee replacement that failed and the doctor did not address my continuing concerns about pain. I had to have a second knee replacement, this time it was a full knee replacement. I feel pain all the time, but most days I can terate it. Sometimes I can't and that's when I use my chair. Granted I use a power chair as a manual isn't very practical for me. Sometimes I still struggle with feelings of embarrassment when I really shouldn't. However, I have found most people are polite and willing to help me if I need it. I think most people are inherently kind and are willing to help. Oh yes, people do sometimes stop right in front of me a d I'm hard pressed not to run into them. The horn is ob obnoxious but it does get people to move.
Great video as always. Your videos have really helped me with coming out of my dark place. I’m still having issues with family members not accepting my limitations since my strokes. There are some that adamantly believe there is a magic pill or procedure that will return me to the way I used to be. Or I just don’t try hard enough. Thank you for your videos they help a lot.
My first real outing I wore a low cut shirt and my waiter could not focus, he was just staring at my cleavage. My ex had to wave at the guy to get his attention, more than once. Then I had a couple of cocktails and didn't realize my meds would make the effects much worse so we left that restaurant, hubby pushing me and me making car noises complete with screeching tires every time he turned. To say folks stared was an understatement. Ex was howling and doubled up by the time we got to our car.
First thing I noticed was that every sidewalk slopes toward to road. You have to break w/ one arm and push with the other, sort of constantly turning away from the road. It’s terrible and hurts ://
What an inspiration. I've been struggling to walk now for over 2-years & trying to stand & do 'normal' things has probably wrecked my back, combined with a lack of follow-up care (if it had happened 10-yrs earlier might be a different story!) We are about to remodel our ground floor to make the bathroom & kitchen accessible for me - & to factor in future needs as a wheelchair-user. However, since watching a few of your videos, it has dawned on me how (unnecessarily) HARD my life has been trying to keep ambulatory and how I can NOT do what I ought to be able to do - I was one of those people who preferred to do things standing - but now that kills me trying to cook or do chores, & am basically house-bound. I s'pose I need to get back to the Dr. & ask for an OT referral to start the process of getting into a chair & getting more mobile and useful! How many hours a day can you spend in one chair? Having to spend most of the day in a static chair is very painful - I aim to get up & walk around regularly, try & do some gardening bits & bobs, but hard in winter (I'm in Australia, now) but I s'pose in a chair you are actually moving about more than you would stuck in a reg chair then trying to drag yourself about? I could do MORE & I wouldn't need an awkward chair arrangement - I can't use an office desk as the chair skited out from under me!! Yes, even with a rollator, people don't see you. I only go out a couple times a year as it is such a palaver - takes so much planning & my husband is over-worked & exhausted as it is (doing my chores, working FT, we have a large property & dog) but I am amazed at people's ignorance - even if you plant a smile on your face they still blank you or try to walk over you - incredible! Hope you're doing better and many thanks for sharing your story & it does help seeing you live YOUR life. And feeding your cat - I still can't feed my dog, & we're desperate to get her a friend, but I can't really manage her let alone another... Time for an Adjustment methinks, thank you!
I have EDS and use an electric wheelchair, only outside at the moment but they believe I will need it full time. My home is adapted for me and my future needs. I do get a lot of stares especially with tattoos. People just don't move and even in hospital they get annoyed because I take more room in a lift but I love those who wave that use the same wheelchair as me! It means I have more independence so it's so nice but also hard when others see it as annoying but others help. Some doctors ask why I use the wheelchair and don't seem to understand it can be for many reasons.
I enjoyed your video showing the kitchen layout etc. I would love a talk through on the details that you went for. I have mine lowered in places but not open underneath so cook etc sideways on. My oven door opens down but then fold away under.
Hi Gemma - as you say a "its a long story" but in short nerve damage (radiotherapy) and a lot of broken bones caused me to re-think how I get around (thanks to a kindly physio at my local hospital who put me on the right track). My biggest fear was how my friends would re-act - I wish I hadn't spent any time thinking along those lines - everyone has been fantastic. I'm a big football fan and stopped going to "away" games as it was too risky for me. Roll forward to 2022/23 and I'm back doing what I enjoy. But in answer to your original question - first time out was a real eye opener and extremely tiring ...I learnt to "read the pavement" and watch out for things Id never noticed before. 11 months later I'm a lot more confident and wish I hadn't been so stubborn. Getting a wheelchair isn't giving in - its getting on . Keep up the good work xxx
This is the first time I've watched this video. Now I've watched a LOT of your videos and they have been instrumental in improving my wheelchair experience. I'm a very recent ambulatory wheelchair user. I haven't noticed people really staring at me, but I don't really care. I am so grateful for the opportunity to get around without any pain, I have neuropathy from probably MS and each step is horribly painful. Like you've mentioned it is so surprising how little it takes to affect the use of the wheelchair. The camber in the roads is SO noticeable. I live in rural area with very no sidewalks and roads that are terrible. All that being said I am absolutely in love with my new Wheelchair Life! I am so very grateful I can get out and get around, go to stores, go shopping, go to eat, have coffee, etc. It Is WONDERFUL! No Pain while getting around! Yeahhh! Thank you so very much for your content. It has helped and prepared me for all that I may encounter.
i'm fairly new to wheelchair life, (early 60s.) The hard part for me is travelling. i can't do anything like that on my own anymore. thank god for uber. the hardest part is having to just wait in the heat until the ride comes. i do have a small dog and usually end up worrying more about her than myself.
I got my injury at 18 months and got my first wheelchair when I was 3 so I don’t really remember anything before that. I had friends, I had family I was a generally happy child(A much more grumpy adult though, lol). The most strange thing anyone has said to me was 2 or 3 times as a child…when ADULTS asked me how I could be so happy. Umm…I never had any answer to them. What should I do instead, sit in a corner and scream and yell and cry? I don’t think I noticed people staring as much when I was a child, that came when I became a teenager. Luckily I had my baby sister that I could put in my lap at all times and people would coo over her instead. I do notice people staring now but like Gem said, you get used to it, I don’t really care anymore. Even though I wish that it never happend, I’m quite happy over mom’s newfound understanding how hard it is to do some things in a wheelchair after she broke her leg recently and needed a wheelchair. Yes mom, vacuuming is a pain in the *** and yes it IS very hard to dust and clean where you can’t reach! Thank you! ;) People can be empathetic to your situation but until your in it yourself you can never ever know for real, even parents.
@@aurorag1710 Ouch, bummer! My mom needed surgery too(a bad fracture in some of the bones in her ankle after a fall) but that was done the day after luckily. But she felt cruches was too unsure with the plaster and she was not aloud to put weight on it for 6 weeks. Today is the first day she can but it hurts too much and they say it will take 6 months until she’s fully well and mobile again… I hope your mother will get it fixed soon!
@@thetoothfairy7688 I don't know why but half of my message got deleted 😧😧 I also said that she now understands my struggle and pain in everyday tasks because I was born with Spina Bifida and I've been using crutches my whole life... Better late than never 😅😅
I enjoyed this style and just wanted to say: thank you for being a open kind caring person. No matter who we are there comes good and bad times. Always remember who your PERSON is in this life and enjoy some PERSON TIME. ❤️💟💕💖💓
im getting my first wheelchair soon (hopefully delivered october) ive used shopmobility powerchairs/scooters a couple of times when going for full days out and its been a spoon saver definitely. but ive had times where the battery has gone dead. after a lot of thought and conversations with my (very supportive) mum im going with a manual/active chair with efix for when i need it as my strength and energy levels vary daily and throughout the day (pots and eds). ive gotten to the point that somedays using my stick is putting out my shoulder when i have to rely n it too much. i cant wait to take my nibblings out for days out, already making plans.
My first outing with my powered wheelchair was picking my 2 daughters up from school. We live rural and I was so nervous I ended up jammed against a chicken coop. Don't ask me how I managed that! I love my chair and am now a smooth driver😂thankyou for your super duper videos😘👑💗
I have like walked with crutches and such for years, and used wheelchairs for long distances like attraction parks and such. Friends and Classmates and such were just telling me how they were so unaware of all the stuff that comes with using a wheelchair. Taking different routes, not being able to enter rides with a wheelchair, how to navigate trough cities, crowds and such. With that I just notice how little people know what comes with less mobility? Same when you have a health situation that requires medical attention on a daily basis. How much extra stuff you need to take with you and take into account when your traveling and such. Extra meds, aware of stuff, finding alternatives, more money spend on taxi's to get around etc. etc. Whatever someone needs
My first wheelchair outing was to a store I knew well enough to navigate. No problems there. My second one was a festival of all places. My family is a bit more protective of me on chair days. Understandable because I'm short even for a wheelchair user. It was lot easier than I thought it would be, since I've had wheelchair users in my family before, but definitely more tiring than I was anticipating for a first timer.
I had to use a wheelchair on and off for a while when I was 9, I missed a lot of school as my classroom was upstairs and my mum would have to leave me outside of shops. I also had casts/splints on my legs, not because of an injury but because a problem with my tendons. People would ask really intrusive questions and I would make up silly responses l, I think shark attack was my favourite.
I didnt mind the staring, i minded how people would cut me off from my family members when in a store. Walking right in front of me like I wasn't there. Or not even want to talk to me directly whem ordering at the counter .
I remember the struggle of wanting to open doors for myself but not being able to and relying on other people to do it for me. That was over 4 years ago. A week ago, I was out shopping with a friend of mine, and a lot of the stores we went to had 2 sets of doors at the entrance - I'm pretty sure that I destroyed a lot of people's stigmas that day, because whichever of us (either my friend or me) got to the first door first, she opened and held it for the other, and the other person opened and held the second door, making it clear to the people around us that just because I'm in a chair doesn't automatically mean I can't open and hold a door (a lot of able-bodied people don't realize that being in a chair doesn't necessarily automatically rule out the ability to open a door - I know that some can't, and there's absolutely nothing wrong with that, but there are also many of us who are still able to once we figure out a way that works for us). There's a weeklong seminar I go to every summer, and I derive great pleasure from showing the other attendees that I can in fact open and hold a door for people just as easily as they can, because last year many of them thought that, just because I was in a chair, I was apparently incapable of doing so, even if I was already partway through it (nearly got pulled out of my chair more than once, and I ended up using the back door instead of the front door almost every time in one of the buildings just to prevent it; they were a lot better about it this year - don't think I had to ask anyone to let go of the door (them trying to open the door while I'm still holding it throws my balance off so much that if I let go of the door, I'll fall)). The only other thing I had to deal with for that this year was some questions from people who weren't there last year but were in 2020, but those were asked out of genuine concern, and I basically said that my spine's been messed up since grade school and the only reason I didn't use it in 2020 was because it was another 6 weeks before I got it (both perfectly true - seminar was in early August that year and I didn't get my chair until late September). I also finally got a chance to show one particular person that I haven't "become too dependent on it" (whatever the heck that's supposed to mean - she was never able to explain what she meant by that, even though I asked more than once, and she had no business trying to tell me that in the first place anyway) by walking and riding horses in front of her for 3 hours straight (I'm a part time wheelie, mainly using it for long distances on smooth surfaces because my legs will give out on that kind of terrain, but I've pretty much never needed it on uneven surfaces, even for long distances (so never needed it at the barn) - go figure).
I’m a life long wheelchair user, so I’ve never known any different. I mostly just get little kids staring, which I think is totally fine. There are more walkers than wheelchair users and these little kids may not have any family members in wheelchairs. Personally I see nothing wrong with asking why I or someone else are in a wheelchair. Most aren’t asking to annoy us and I don’t ask to annoy someone. I ask because I am a wheelchair user myself and the person I ask may have the same condition, spina bifida. I do understand that being asked might be upsetting, depending on the circumstances, but as you said if that’s the case then just say it’s a long story or you’d rather not talk about it. One of my friends who is in a wheelchair said it was a long story and I accepted that and apologised and explained I wasn’t trying to be nosey, but again I do know that some people are just pure nosey. I’ve had people ask me out of nosiness. I had a stupid woman tell their little nephew that my wheelchair was a tractor. I don’t know why she wasn’t honest and said it was a wheelchair and I was in it because I couldn’t walk. This woman was a former teacher too. Can I also just say that you are very lucky to have your independence, having your own house, you are able to drive, you have your own family, you have a job. Myself and a lot of wheelchairs that I know don’t have that. Also I’m obsessed with your new kitchen! I have rewatched your new kitchen q&a umpteen times 😂 Have you got used to all the bits that weren’t quite right like the tap etc?
Since I was on crutches and leg braces long before I went into a chair, I was kind of already used to people staring at me. So I'd had many years to learn to ignore them. When I first went into a chair, is shocked at how difficult it is to push on an uneven footpath! One thing that I've learnt is that when a business says that it's "fully wheelchair accessible", it's best to check for yourself.
This is a fantastic video and covers everything that really effects you when going out in a wheelchair. The finishing message is so right though, it definitely does get easier. You are right you still get bad days but definitely easier. You learn how to deal with the ignorant people better
I use your videos to prepare for the future. I hope the issues I'm going through now with my current auxiliary aids strengthen me for the future. I'm not yet needing a wheelchair, but I have large forearm walking sticks. I also have an assistance dog. I'm 26, started to use visible auxiliary aids a couple years ago. People stare and stop me to ask questions, lots of issues with assistance dog. People ask such inappropriate and personal questions! I am autistic and have bad anxiety disorders so it is very difficult! It is slowly getting easier, probably because I live on a remote island and more people are aware of me (I'm on social media).
Hi, I just recently found your channel from your collaboration with Jessica Kellgren-Fozard and am looking forward to catching up on your videos! I’m not a wheelchair user, but I’ve been using a cane for a few months due to EDS. I live in Japan and people here are generally way less nosy with strangers than the US where I’m from. So while there was staring from my students at first, they got used to it pretty quickly and treat me normally now. Honestly the staring they did due was probably a combination of me being the only non-Japanese person in the room and also the fact I dress androgynously on top of the cane lol. I teach junior high and they have been nothing but respectful. Honestly I find the cane useful for non-verbally communicating that there are things I can’t do. Even though I technically can walk without a cane, there’s a lot of things that are difficult with EDS, and I no longer have to try and explain why I can’t do xyz. I just gesture to my cane.
I've been a wheelchair usual since 2020 and I cried at first. I knew I was going to end up in a wheelchair and 12 cause of my scoliosis but I didn't know it was going to be this soon so like I said I cried now I'm used to it
When I was first diagnosed with severe arthritis I was given a hospital walking stick. I was 18 at the time, I would not use the walking stick due to being embarrassed. I ended up buying crutches which I thought people would think I was injured short term rather than disabled at 18. I am 41 now and I do not care what other people think. I use a walker, a walking stick, crutches or a wheelchair depending on pain levels and distance I will be doing. I essentially made myself housebound due to not wanting people to see me using a mobility aid. What changed for me was a friends son is in a wheelchair and I thought well it does not bother him so why should it bother me.
My main issue with using my wheelchair is that people immediately see you and it twigs 'oh shes disabled' but when I used walking sticks or crutches people didnt see that. They only saw my age and assumed I had a small injury, and would ask, what have you been up to. Using my wheelchair has its ups and downs. The world is not made for easy acces for wheelchair users/disabilities but at least it gives me back some freedom. Also any bigger people hate that ramps with any steep incline are a tipping hell? The amount of times ive tipped back in my chair because my weight overbalances my chair is ridiculous, embarrassing and caused me many an injury.
as i was born with my disability (spina bifida) my 'first time' would have been in the late 70's/early 80's, i have trouble remembering last week so im not gonna remember my first time in a wheelchair lol.
One big problem I have is that my city has cement stairs on each street corner. U have to stay in the road with traffic bc it’s impossible to go up and down all those cement stairs each time you have to cross a street.
I’m not paraplegic but busted my ankle in the worst way and permanently due to an accident but because of muscle disease needed a wheelchair because crutches were an absolute nightmare (the pain, I was mobile/handy enough with them but my arms weren’t up for the task) so of course one day the wheelchair came. I was 18 and my mom and me went somewhere with a bus and she has some difficulties herself so it was far more easier for us to lift an empty wheelchair (well, it was more like that was the only option for us at that time) but the hostile looks I got when I got up from that wheelchair!! It’s like you’re only allowed to need/use a wheelchair when you’re paraplegic or worse. So eventhough the stares that you get when being young (although 9 and 18 are far apart, it’s still both very young for “normal people” to be needing a wheelchair apparently) but anyway, although those stares are very prominent and awkward to notice at first (that noticing and the feeling awkward about those luckily does lessen, indeed), the outright hostile looks still make me “toughen up less” when I need to get out that wheelchair for a second, just to give those vigilant people a sort of proof as to indeed needing that wheelchair… 20 years later I still do that sometimes 🙈🤷♀️ Also, when I started to gain weight the minds of people seemed to be more understanding about me using my wheelchair. Due to some illnesses and disorders I now have a mobility scooter because even those light wheelchairs were too much for my arms to handle. I now have reached the mental era of not giving a hoot and I get the impression that that self-confidence does a massive job at rendering those ignorant or inexperienced people their harsh judgements of whether or not I seem to need that wheelchair or scooter (or crutches, I have a pair with a horizontal underarm fitting since my wrists are way worse than my upper arms, I do use these sometimes when my body allows that type of strain. Also, I still can’t believe how much people feel… obliged almost to Always cut/cross a line of people right before a wheelchair, not only resulting in those people denying our rights to a bit of personal space above our lap and feet. And also their lack of thought, due to being inexperienced and therefor a sort of lack of (understandable) empathy to some people being outright arrogant of the possibility that that Person/“not a puppet” in the wheelchair might have chronic pain that is worsened by their “just getting through here for half a second (as in that won’t -can’t, even- hurt anyone?)” But in any case, with whatever troubles we might experience; thank goodness that wheelchairs and other disability aids exist!! I am sooooo grateful that the people that handled my casefile, that those people at least saw my need for those aids because it would financially have been impossible to get it for the full price ourself! Because it truly is something or somethings, plural, that allows for many of us to HAVE a life 💜
When I have to use my wheelchair I find it easy to use why footpaths are on a slope it for water runoff as I used to do tarmacking, so I know why I find family think I have given up but I am in to much pain so I would use my medical aids
Thanks a lot for your videos! They are really helpful for me 🩷 If I am stared at, which does not often happen, I imagine being a cow and stare back until this person feel really uncomfortable and turn away. My my family with uncles, aunts and a lot of cousins accept my wheelchair and disability. I talk about it very open and answer questions when they come up. My cousin who has similar issues as I have- hEDS- faces more problems that others accept their wheelchair as she is very overweight and ppl think she can't walk well because her overweight. As I am new to be an ambulatory wheelchair user, I am often nervous about leaving the house. Once out. I forget about my anxiety and enjoy getting around with my Batec. I am a GP and I have to go to a family doctor conference in Lucerne tomorrow. It will be my first overnight trip. And as I am always nervous to go to conferences, going there the first time in my wheelchair makes me VERY ANXIOUS. But I know if I go there, I will be very proud of myself and full of endorphins. If I chat with ppl let's say on a train or in a taxi and after some small talk they ask me why I am in a wheelchair- they often assume I have MS - I explain them that I have a rare disease , hEDS, that makes my legs weak, my joints loose and affects my nerves as well. I also tell them that I am fine with my wheelchair, but I am not fine with doctors that gaslight me.
I’m not to the point of a wheel chair yet- I use a walker. It was a big adjustment. But I dove in full force attending our local auto show as my “debut”. And oh the relief!! There were people everywhere using every type of mobility aide. I anticipate difficulty when the time comes for me to transition to being a part time wheelchair user. One of my walkers is a transport chair, but it’s terrible to roll on plastic wheels
Honestly I can’t compare it but I’ve pushed my mom about and I understand the staring. Like the first time my mom did parents evening in her wheelchair I was very stressed but honestly other than teacher like other kids haven’t mentioned it to me even though I saw most of the students in my year there
I wish I had known how much damage one can and will do when using a wheelchair that isn't built specifically for them and just the generic "hospital type" wheelchair. And how much easier it is to get around in a custom wheelchair than the generic "hospital type" chairs. I would have faught to get the custom chair 10 years ago instead of doing another 10 years worth of damage to my back. Now if I could find somewhere to learn the wheelchair skills I was never taught since I was still ambulatory when this first started and it was deemed "unnecessary" for me to have those skills
The vast majority of the skills videos I've put in my personal wheelchair playlist are from Gem, Wheels2Walking, Paralyzed Living, UWSpinalCordInjury, NCHPAD, and Daniellability. I learned almost all of my wheelchair skills from their videos.
Gem I also take part in charity 5km runs I have a running 🏃♂️ partner to help me get up the hills the last hill most of the runners end up walking it as it’s such a steep hill!👨🏻🦽🏃♂️
I am visually impaired and recently started using GuideDog and it really frustrates me too when people block accessible entrances and curb cuts and particularly when they stand in the middle of the stairway so you have to go around them I’m like can you find any more of a hazardous place to have a conversation.
I'm using a manual chair for the most part recently. I'm using it a lot more now and it's so much easier than the power chair to load and unload. Oddly enough, people seem to think I'm more fun/cool/alive in the manual. In the power chair, apparently I'm almost dead and incapable of speaking for myself or understanding or thinking. In my manual, I'm fun and cool. It's so damn weird.
Hi Gem, I love your you tube video's. I am since november 1st 2019 in a wheelchair from Nov. 11th until may 19th 2020 I was in hospitals in Winnipeg Canada. Eversince I have been out of the hospital, I find people are staring and look at you as if they want to ask you questions. But they don't have the guts to ask. Until last week when we where at Mc Donalds and a littile girl, I geuss she was about 5 or 6 years of age. She asked me why are you in a wheelchair? I told her that my legs didn't work anymore, and the doctors were not able to find out why or to if they should operate or not. You should have seen moms reaction. She told her not to ask questions like that that wouldn't be apropriate to do. I answered the mom by saying, these are the questions you should ask instead of staring at people in wheelchairs. And ask the person who is with them what is wrong, instead of asking the person in the wheelchair what they have. Gem we love what you and your family are doing for us. Keep up the good work and God Bless. Greetings from Winnipeg Canada Jon and Rina van Beilen.
Watch out for part two as we are going out and about, as if its a first time in a wheelchair. Im going to show you where I would go, or recomend your first time to be. Where did you go in your wheelchair for the first time?
Last Video:
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Stupid things People say about my disability
ua-cam.com/video/pa2-_uaoBrQ/v-deo.html
Why your comments to disabled people Hurt
ua-cam.com/video/nPk8xdEHJ5A/v-deo.html
I became a wheelchair user & this shocked me the most
ua-cam.com/video/5nl2tyCGAIU/v-deo.html
I liked the video style very much
I went to Walmart! Honestly a bit overwhelming, but so freeing. The ability to shop without significant pain distracting was life changing.
I realised i really needed a disabled parking card. The first time i went out with my wheelchair i got blocked in and couldn't get back into my car
I’ve thankfully never had that happen even when I don’t park with my parking pass (before I had it or when there’s no spots) but I always made sure to part very strategically, like by cart stalls where I’d automatically have more space.
I'm not a wheelchair user, but the first time I spent a day around a wheelchair user the things that stuck out to me were how much people stared, how much FURTHER the disabled access routes were around the university campus (somewhere that claims to be very disability friendly), and honestly how much I felt like I didn't know what to say or do. I've tried to grow a lot since then based on that experience, because I want to be open and accepting and not make the other person feel like THEY have to make me feel comfortable.
Another thing that gets me - my partner is disabled (non-wheelchair user) and they had a wheelchair accessible bedroom on campus. But this room had NO STORAGE. It had one rail to hang clothes on that wasn't even tall enough for his shirts, one drawer, and one set of shelves. No storage in the bathroom. We ended up buying a couple of storage units for him, but even that wasn't enough really. Don't people know that disabled people (in general) need more stuff than able-bodied people, not less??! Sure the room had floor space to wheel around in when it was empty, but good luck keeping that room tidy with nowhere to put all your things🤦
I'm off on holiday tomorrow and we've hired a wheelchair for the first time, because of chronic pain and exhaustion, so that I can do more of the family outings without being in so much pain and wiped afterwards. I've been very stressed about the whole thing even though i know its the right choice for me. Videos like these have helped me get to the point where i am willing to try using one rather than a blanket NO all the time.
I hope your holiday goes well! The wheelchair might take some getting used to (I say from my own experience), but it's definitely worth it for saving energy for other things, especially on holiday. Nothing worse than having to bow out of half the holiday activities from sheer exhaustion and pain if you can avoid it.
I went on holiday to Australia and hired a mobility scooter that fit in our hire car. It meant I could actually participate so much more in the holiday and save spoons. Highly recommend
I used a courtesy wheelchair for the same reason at the Royal Ontario Museum (Toronto, Canada) on my birthday recently. I was so awesome! Kind of the best birthday ever. It was the first time in years that I was out in public, not dizzy, not having to calculate where the next place to sit is and when I might need it, and so much less pain. I hadn't realized how tired all of that and dealing with crowds and people jostling me (even with my bright purple and pink canes) was making me.
I hope your holiday goes well!
If you have time before you go, both Gem and Richard on Wheels2Walking (UA-cam) have wheelchair skills videos.
I did this for our recent holiday and honestly it made a huge difference. I was really glad I did.
Most hires I've had have been push only - I did find I needed to have a conversation with the person pushing me about expectations for how we managed that, as it was a new aspect of our relationship and a new trust for me to put in them.
Being in a wheelchair, you learn quickly that you have to adapt to just about everything, reaching for items, finding people who are willing to assist you, dropping things and figuring out how to pick it up, bathrooms, kitchens, stores, eateries, get dressed, showers/bathes, sidewalks are actually sloped, learning to steer a wheelchair, wheelie pops on curves, bumps, and so on, staying alert when other shoppers aren't, there's just a lot, it's kind of a different world/life style, if you can walk a short distance as in getting a wheelchair and others wondering why you need a wheelchair, people not realizing how much more effort it takes for a wheelchair user to do the same task
I realized two things. First, how difficult walking had become for me. Movement went from slow and laborious to relative ease. I am not exaggerating when I say it was liberating. Second, that hills suck. I had no idea that even the slightest hill would increase the difficulty so much. If people stare, I haven't really noticed, because I feel so much more happy and complete when using it. Thanks Gem for your excellent channel, I've learned so much.
I have EDS and I've had to use a wheelchair before after knee surgery. I've also got a walker, a rollator, and a cane. When I use my assistive devices, they help me SO much. I've been relying on my rollator more for longer trips and it gives me the energy to visit museums again. Such a blessing! But when I first had to use assistive devices, I was so aware of the staring. The cumbersome-ness of my rented off-the-rack wheelchair was absolutely annoying.
Now I'm older, I don't think about the stares nearly as much. Lots of people give me looks over my use of handicap parking. Not as many have given me looks with my rollator. Actually, some folks have been really kind about it (ie. holding open the bathroom door, etc). 😊
Honestly my fav thing about being a wheelchair user is answering questions from curious children. I love when their questions and comments come from a place of genuine curiosity, and knowing that I am at least a little bit responsible for properly educating them on disability makes me very happy.
Very young children often think my wheelchair is a pram/buggy and point it out to their parents, which is very cute. Another child (maybe 4 or 5?) asked me if I used a wheelchair when I was in my mummy’s tummy! She was so fascinated by what I had to say, lol
I agree - one of my early jobs after college involved writing an accessibility guide for my local town. I wasn't disabled then, but it certainly opened my eyes as a young adult as to how unnecessarily difficult 'normal' life was for people who had mobility issues. Certainly taking the time to explain to youngsters what it's like for you is very helpful - that's the sort of education we need - sharing the knowledge when & wherever possible, so they grow up understanding that Life isn't the same for everyone and not to take for granted the freedom they enjoy with healthy faculties - they could go in the blink of an eye. Knowing some of us have to work very hard to get where we want to go, might aid these kids to grow into more compassionate adults who will facilitate success for others, rather than erecting inadvertent barriers due to ignorance - making life better for all. Keep well.
I love this type of video! I have a progressive neurological disease and was in my early 50’s before I got my first manual wheelchair. My husband, my mother and I were going to a casino and I used the wheelchair for the first time as it was huge and I was worried about fatigue. We were in line for the restaurant and my husband kept bumping into the man in front of me and when he turned around to look he looked at me! It happened repeatedly and I started laughing. I warned my husband at every outing please don’t run into anyone because they think it’s me. Now I have an electric chair totally under my control and I am a fantastic driver: )
I am a part time wheelchair user . I have pots and eds and i got looks when i got my chair out of the car and sat down .
I’ve had ME/CFS for 45 years - my mobility has deteriorated in the last year and so yesterday I got a beautiful, refurbished power wheelchair. Today I’m upset because I am nervous to go out in our village and be seen. So I found your video which has helped a lot! I intend to go out later but definitely today. Thank you.
I haven't gotten into a wheelchair - yet, but I suspect it might be coming. However, in the 1980s I was walking into work and talking to a lovely co-worker, who was in a wheelchair, and had been all her life. This man was coming out and stopped and asked: "Why aren't you pushing her?" We looked at each other, and then the man. J said: "Why would she do that?" and I asked, pretty much at the same time: "If she wanted me to push her, she'd've asked." J had gone out to exercise during lunch, wheelchair users have to exercise just like non-wheelchair users.
I like this style of video from you. I’m recently back to work as a teacher, in a wheelchair. The teenagers stare some, but generally so far they are going out of their way to help me when I ask it. My first memory out in a wheelchair was out at a restaurant and I hadn’t mastered all transfers yet and I was still in my loaner chair, I didn’t fit well at the table. Made for an awkward dinner. Since I’m ambulatory teaching in my chair enables me to have energy to walk for other areas of my life. Convincing my family of this has been hard. I know in my heart I’m not likely to walk full time at school again, but they seem to think I’ll get there with time.
My chair was the best decision ever. I can so much more. Not to mention the improved independent. If I need my crutches I’m going to use my chair because I’m so much more independent
I kind of cheated, my other half has Cerebral Palsy, so I had gone out with him with his wheelchair MANY times over the years before I became disabled and needed a wheelchair myself. I think though what hit me the most was how tiring pushing the wheelchair around the shop was. He always made it look so easy.
I have been medically gaslit about my conditions and now I find it hard to realize that I deserve to use a wheelchair too. My legs may work but the pain, exhaustion, and possibility of a joint dislocation isn’t worth it. Wheelchairs are such a vital part of so many of our lives and I’m forever grateful that they’ve given all of us our independence back!
Something I realized when I first started using my chair was how important it is to make the chair fit you (as much as possible). I'm only 5'0" tall, so having armrests made it very difficult and painful to push myself. Took them off! Also, since the footrests didn't adjust well enough to support my feet well, the only thing they did was make it harder to get thru doors. Took them off! Finally, not having a decent seat cushion not only makes your bottom and hips hurt, it can make your posture wonky and give you back pain. I was given a hand me down gently used gel cushion, but it's not the right size. Took that off too!
I can't afford a custom wheelchair right now, but I can't afford to risk pressure sores, muscle aches, and worsened fatigue by using an "off the shelf" chair. Do what you can to optimize your chair for your needs.
While I was in the hospital after my leg amputation, the rehab people gave me a piece of very stiff, tapered foam that "flattened out" the sag of hospital-style chair seat. They added a piece of that "egg-carton" style foam about 2 inches thick at the peaks. That was okay when I was mostly in bed, and not in the chair much. When I got out of the hospital, I added one of those cushions with a coccyx cutout, about 2 inches thick (< $20 at Walmart). Now I'm in the chair at least 14 hours per day, sitting on about 4 inches of "medium" foam. It's not luxurious, but it's "okay", and I only recently got my first pressure ulcer after over 3 years (I put a fold towel on top of the cushions to prevent sweat and dirt from getting on the cushions, and I think I put a crease in the towel)
My first time out was to the library. Our library is enormous and very accessible. It was a little daunting at first; I still have a hospital-style wheelchair because it's what we can afford, so it was bulky and difficult to get in and out of our vehicle, and near impossible to self-propel any distance. My husband did everything he could to make it an adventure, and he made it a great experience by adding life and fun to it. :)
Thank you for this video! I'm getting my first chair after fighting against my disability for years and this has normalised it in a way I really needed 💕
Really love what you and everyone else shared in this video. I think for me, using a wheelchair for the first time (at the zoo) was a bit easier because I'd already been using a cane for a year, so I had gotten use to a little bit of staring (I just didn't notice it really). The most noticeable thing for me, because I'm an ambulatory wheelchair user, was how much it reduced my pain and fatigue doing an activity. That was such a relief to know I could do things I love without being stuck in bed for days later or stopping because I needed to sit down every few minutes.
Yes, this is something I hadn't realised - I keep thinking it's me being a wuss. But actually I could probably do most of what I want to do if I just got myself into a wheelchair!
Ive been on wheels for 2 months now and camber is still the biggest menace!!
First time I was using a wheelchair I learned two things. One, self-serve soda fountains are not reachable, so I had to get someone to get me a soda, which kind of ruined the point of self serve. Two, that when in a crowded area I couldn't really see anything and was like wow, I sure can stare at a lot of butts I guess. A few times later I learned that even if I find a good spot to watch a parade, rude people will look at me, then immediately stand in front of me so I can't see because they know I can't stop them.
Basically, the things that were negative were all down to other people. The positives? I could get around in way less pain and had way more energy for other things! Overall? Wheelchair use is definitely worth the few downsides.
After so many of your videos, when I went on vacation and I used a mobility aid in a very busy public place, it made it so much easier. Now that I finally made the big purchase for my own, I am excited but nervous to go out in it. But I know your videos and this whole community has helped me feel confident!
Due to the slow progression into my disability I was better equipped to handle the reality And now I see it as an opportunity to let strangers help all have been glad to assist me Have a day love 😍 from TEXAS
The first time I went out on my own, I took the bus. I had no idea what was going to happen. But all went super well. The drivers were very professional and helpful. Some people at the store kind of stared at me. But others who were also in wheelchairs waved at me with great joy! At one point I was going down the sidewalk and a mother with a child in a stroller was coming in the opposite direction. The child looked at me up and down. Then he gave me a huge smile and waved at me very happy that there was someone else on wheels! The mother and I just burst out laughing, it was precious.
New user, loving ❤ the honesty of your videos.
My first time out, I was NOT prepared.
All the wrong clothes, didn’t think to call ahead to inquire if my destination was actually accessible to a chair user, got stuck on a curb, got stuck in the toilet couldn’t get transferred out of the chair and onto the commode, soiled myself , didn’t have clean clothes, or diaper wipes, etc. had a complete melt-down. I can sorta laugh about it today, it still makes me cry.
The place I worked for my first year out of college, there were a couple of manual wheelchairs (belonged to the facility, so not anyone's personal chair) that we would sometimes mess around with for fun if we had some time at the end of our shift after finishing everything we needed to do. It was there that I realized that steering a chair is not nearly as easy as it looked, and that it takes some getting used to and practice to do it well, and also that going up even a slight slope is way harder than you'd think it would be. The first time I ever actually used one for myself, thankfully there weren't a lot of other people around (so less chance of running into someone on accident), but I still had a lot of trouble pushing myself (it didn't have removable armrests, and I'm short enough that they got in the way big time), let alone steering, so when we got to the piano and harpsichord room at the National Music Museum in Vermillion, SD (that was the first place I used one), I had my mom push me because I didn't trust myself to be able to steer through what appeared to be really tight spaces between them without accidentally hitting any of them. We were there for about 3 hours - with standing, my legs were giving out on me after less than half an hour, but once I switched to the courtesy wheelchair they had, I was able to go the other 2 1/2 without any issues (other than the aforementioned).
I've had my fair share of staring, people being downright rude, accessibility issues, and weird/stupid questions (including the "how are you so happy?", and I made sure to educate that person because she meant it well but genuinely had no clue - "if you went from not being able to get out on your own to being able to go wherever you wanted without help, you'd be happy, too"), but it's the people who have known me for several years saying "glad to see you upright/walking" that pisses me off, because while I know they mean it in a good way, they don't realize that it's totally uncalled-for and dismissive - just because you see me walking right now doesn't mean I'm actually doing any better than when I'm in my chair, because what you can't see is how heavily I'm leaning on this shopping cart on order to just stay upright in this smaller store when 15 minutes ago I was using my chair in a store that's 6 times the size - I make sure to explain that just because they see one thing doesn't mean that the reason they think that it's that way is the real reason: there are a bunch of factors that go into the decision of whether or not to use my chair. To be honest, though, without me even trying to ignore it, I rarely ever notice the staring, and that's been true from the very beginning - I knew before I ever started using a chair that it would happen (and it does, a lot), but I was surprised at how little I actually notice it; only a couple times has it been bad enough for me to actually say something - the first time, it was someone I knew who didn't realize it was me because it was dark out, and the second time was a grocery store cart collector who stopped and stood staring while I was putting my chair back in the car - I don't think he realized that you aren't supposed to stare, even in general, until I asked him directly if there was a reason he was just standing there and he said there wasn't, and he continued to stare for a few more seconds before moving on.
Ever since I started decorating my chair, though, I've noticed that far fewer people ask stupid questions, and instead more often comment on the accessories I've added to it (you mentioned this in one of your videos a few years ago, Gem) - I've got lights on the front (white), sides (colored string lights on the rear wheels), and back (red) because where I live doesn't have enough sidewalks (and on my street the ones they do have are uneven) and even fewer curb cuts (the average number of curb cuts in any give intersection anywhere in my town except the main road and the streets one block north and south of it is 1-2, even though almost all of them are 4-way intersections), so I'm in the street a lot of the time when I'm out at night, and there aren't many street lights (gotten a lot of comments about the lights, especially after dark, including one little kid, probably 4 or 5 y/o, going "Look at that!" as I passed his house in an "oh my gosh that is so cool!!" tone of voice); I also have pushrim covers and spoke skins that match the frame color, as well as a cup holder that matches my chair's hardware color, but the spoke skins are the only accessories that don't serve any purpose other than the "cool" factor, I got them purely because I wanted to - I use the cup holder every single day (I got the cup holder a couple weeks after I got my chair, and in those couple weeks, I found myself keeping trying to put my drink where my cup holder now is), and the pushrim covers are to increase the size and grip of the pushrims because I have a hard time gripping them, even with gloves on, because they're so narrow and slippery. It just happens that the pushrim covers, spoke skins, and string lights match the frame color, and everything else except the tires (hopefully that will be remedied shortly, though not for the matchy matchy factor) is black.
I’ve actually grown to like people staring at me, they seem impressed that I’m so independent, especially getting in and out the car 😊
That's because they have low expectations of our capabilities. Don't let them. Challenge them.
I just recently got a wheelchair and I haven’t been out yet but I’m excited because I been mostly in my room due to lupus and Pots… so I’m excited but I’m nervous in a way too because I know people will look, but you know I’m doing this for me…and I know I need a wheelchair because I get dizzy and have black outs… so it’s a form of self care I’m doing something best for me!
It’s a lot harder than I thought it would be, I live in a community that doesn’t realize disability is not a choice. But I educate as often as I can.
My first time really using my rollator for any length of time, I was attending a conference. I made it through two whole days of classes and midway shopping, on cement floors, and also wearing my AFOs, with so much less pain and fatigue. I was on my own, and really didn’t encounter any negative comments. I opted not to use it at my class reunion (didn’t want questions and gave in to social stigmas) and regretted it almost immediately! When I visited a tourist attraction was the first time I encountered comments, and it caught me off guard. One of the guides told me how proud she was of me “still doing things despite my condition.” Things have deteriorated with my health since then, and there are times a wheelchair would be the only way for me to do things and go places. My doctor won’t write a prescription for a custom wheelchair because she says if I “sit down I’ll never get back up.” So, I’m stuck with clunky, heavy chairs, if one is available to rent on site, that have to be pushed by someone else. My family do not know how to maneuver a chair! I’ve found myself just choosing not to go places rather than fight it.
My first time out in a wheelchair was the day that the NHS dropped it off, no lessons no instructions and with the uneven ground was difficult to keep in a straight line, the staring from people didn't bother me.
I was using a mobility scooter and 4 whelled walker but because of my cronic clonus and spasticity in my legs I was falling to the floor all the time.
My wheelchair has given me back a bit of freedom but I have encountered many problems, one being WAV (wheelchair accessible vehicles) licenced black cabs.
I made a video on my channel about my bad experience using a prebooked black cab.
I was refused help, had to crawl in the taxi on my knees, my children had to load my wheelchair, wasn't shackled down, chair tipped, I had a clonus spasum and had an abusive cab driver.
I am always amazed, to this day, at people's inability to understand that just because my legs don't work properly doesn't mean my intellect has been affected.
I love the vlog style, the messages and the compilation. That ending - wow!
Gem! You are so funny. But thanks for your honesty and your sharing, it is awesome! Keep it up.
I have started using a walker for longer stints out and about but am having a hard time justifying this with my family. "You're so young (64), have you seen the doctor (working on it) and similar comments cause me to not plan much of those kinds of outings with them. Fortunately I didn't have this problem with my half-sister who didn't know me that well. She just accepted that is what I need. Sometimes strangers are easier to deal with than family.
one of the things thats helped me with the stares is giving them something else about me that i have more control over to stare at, be it makeup or clothes or accessories or whatever else.
Super cool to see you doing your chores, motivates me to do mine even though it is harder now that I am in the wheelchair … I need to do what I still can hehe.
People can be so rude and that’s really the hardest thing I can cope with and thank you so much for this great video
At first I was only using my manual chair for shopping trips to bromley or Orpington and hospital appointments then for long trips like going down the coast for the day after a while I needed it full time I now use a tip n space electric wheelchair as I can no longer sit in a normal chair the physical therapist saying I needed to use a electric chair was the best thing I was no longer struggling to move the chair and had a lot of freedom
At first I was scared and embarrassed to use my wheelchair. Now I go around usually without a care in the world regardless if people are looking at me. Sometimes get the people not looking where they are going, blocking or grabbing my chair without permission, which straight away I always sternly tell them to let go of me. Will say that one does get me really riled up as I am also autistic and really do not like people in my personal space or touching me without permission. I do tend to get a bit freaked out and uncomfortable when it happens.
I am not sure it was my absolute first time but one of the first times I went to a clothing store with my aunt. The salesperson asked my aunt if she wanted to put me "over there" while she looked around. We said it was me who wanted to shop and immediately left. It didn't make me feel hopeful for my future. About staring if I catch someone giving a prolonged stare I stare back.
I am 75 paralyzed war veteran so I go to the Veterans Administration Hospitals. I have trouble with my wheelchair because of weight, but they won't give me a lightweight chair. I took somethings off of it. What bugs me is the spring loaded doors. I have alot of people who are eager to help me. Never realized that there were so many especially young folks and other aged people who are willing to help me...
Okay so, the first thing I noticed was how much more I could do, like when it came to staying out with friends. The next things I found out was how little support my family I was living with had, how to load my chair in my car the best way for me (my back seat works best for me but I’m ambulatory and can load and unload my chair myself… my trunk in theory would be convenient but is too small.), how much easier getting into the bathroom at my main grocery store was (seriously heavy doors, but easier than opening it on crutches!), and every uneven bit of pavement in my town everywhere I frequented.
I’m also learning how to pack my car for road trips with my chair and thankfully lately I’ve been able to just walk or use crutches when out of the car on pit stops but I will need to learn how to pack when I can’t do that as well….
My first time out I went to a store I had wanted to go to but I never had the time, I bought a headband that has kitty ears and yes people stared but in a different way, they smiled and kids would come up to me to say I like your ears. Our driveway is a problem because it is so steep get up the can't get up that hill I wish we had a flat driveway, it is so steep I can't go on it by myself it is irritating.. I hope your days are filled with joy and love.
I just wanna say thank you for making the videos you do. I’ve been having problems with my legs and issues with chronic fatigue for a few years now and because of you I’m finally working up the courage to speak to my gp today about mobility aid options that aren’t my walking stick. I’ve been collapsing a lot for both reasons and it’s getting scary at how bad it’s getting and at the fact I could drop in the middle of a road one day.
I’ve been worrying about it for months, working through a whole host of anxieties like am I just being lazy or attention seeking or what will others think of me and I’m only 21 I’m too young to be disabled let alone potentially use a wheelchair. It took me long enough to start using a walking stick.
And that’s not even getting into what it means for my chosen career. It feels like admitting defeat, that I’m admitting I need a wheelchair. I’m studying production design. I want to build sets for a living. I can easily design sets from a chair but physically build them?
But again, because of your videos and the videos of others I’ve been working through the insecurities. I know that if it helps it helps and other people can stuff their opinions. Using a wheelchair at a young age isn’t wrong. I can do whatever I set my mind to whilst in a chair if I have the right mindset and support.
And I thank you for teaching me that.
Hi Gem i just so absolutely love all of your beautiful videos so very very much you are such the most sweetest beautiful gorgeous woman ever in the whole wide world i love you Gem.
I got really depressed when I first encountered my disability, that was many years ago,which I can't remember what happened when I first went out in it, but now I love going out in my wheelchair, actually I have 3 wheelchairs, just incase one breaks down you can never have enough wheelchairs 😂.
Really enjoyed your video thanks 👍👍
Loved your video. I'm in my 70's and am eagerly awaiting my first chair, hopefully next month. I'm thrilled I found your video before embarking on my epic journey. Cheers
As a disabled service dog handler. I get the staring part. But worse, because no one expects to see a dog in a grocery store, waterpark, restaurant, theater etc. Then a lot of other problems was petting, calling, and photos.
Take a small hand pump for the tyres, what's OK inside is not OK outside (you need your tyres at the max) oh and be aware that everyone will stare over your head and talk to the person with you. But people will almost fall over themselves to help.
I'm ambulatory. The stares make me panic and mess up my steering or whatever else I'm trying to do, so I just look like a clutz. I hate it. Also, bumpy sidewalks, no drop curbs having to double back, all the boring black and grey colours of every device, all the extra planning ahead which brings extra anxiety, the stupid piddly little horn sound on all of them, the fact there's no one chair that can do it all (folds, lightweight, snow, gravel, comfy), I'm in Ottawa and flying to Vancouver with family and my chair in October. Soooo nervous. it just adds extra onto the nerves for packing and travelling already. Doorways not wide enough you have to be soooo precise with steering, automatic door buttons inconveniently located miles from the door or none at all. It's all hard. Kudos to those who deal 24/7.
I'm a part time wheelchair users, mostly where I have e to do a lot of walking. I don't notice stares honestly but I had to get over being embarrassed to use a chair when I can walk. I don't consider myself disabled per se, as I can walk most of the time. I suffered from a partial knee replacement that failed and the doctor did not address my continuing concerns about pain. I had to have a second knee replacement, this time it was a full knee replacement. I feel pain all the time, but most days I can terate it. Sometimes I can't and that's when I use my chair. Granted I use a power chair as a manual isn't very practical for me. Sometimes I still struggle with feelings of embarrassment when I really shouldn't. However, I have found most people are polite and willing to help me if I need it. I think most people are inherently kind and are willing to help. Oh yes, people do sometimes stop right in front of me a d I'm hard pressed not to run into them. The horn is ob obnoxious but it does get people to move.
Great video as always. Your videos have really helped me with coming out of my dark place. I’m still having issues with family members not accepting my limitations since my strokes. There are some that adamantly believe there is a magic pill or procedure that will return me to the way I used to be. Or I just don’t try hard enough. Thank you for your videos they help a lot.
My first real outing I wore a low cut shirt and my waiter could not focus, he was just staring at my cleavage. My ex had to wave at the guy to get his attention, more than once. Then I had a couple of cocktails and didn't realize my meds would make the effects much worse so we left that restaurant, hubby pushing me and me making car noises complete with screeching tires every time he turned. To say folks stared was an understatement. Ex was howling and doubled up by the time we got to our car.
First thing I noticed was that every sidewalk slopes toward to road. You have to break w/ one arm and push with the other, sort of constantly turning away from the road. It’s terrible and hurts ://
What an inspiration. I've been struggling to walk now for over 2-years & trying to stand & do 'normal' things has probably wrecked my back, combined with a lack of follow-up care (if it had happened 10-yrs earlier might be a different story!) We are about to remodel our ground floor to make the bathroom & kitchen accessible for me - & to factor in future needs as a wheelchair-user. However, since watching a few of your videos, it has dawned on me how (unnecessarily) HARD my life has been trying to keep ambulatory and how I can NOT do what I ought to be able to do - I was one of those people who preferred to do things standing - but now that kills me trying to cook or do chores, & am basically house-bound. I s'pose I need to get back to the Dr. & ask for an OT referral to start the process of getting into a chair & getting more mobile and useful!
How many hours a day can you spend in one chair? Having to spend most of the day in a static chair is very painful - I aim to get up & walk around regularly, try & do some gardening bits & bobs, but hard in winter (I'm in Australia, now) but I s'pose in a chair you are actually moving about more than you would stuck in a reg chair then trying to drag yourself about? I could do MORE & I wouldn't need an awkward chair arrangement - I can't use an office desk as the chair skited out from under me!!
Yes, even with a rollator, people don't see you. I only go out a couple times a year as it is such a palaver - takes so much planning & my husband is over-worked & exhausted as it is (doing my chores, working FT, we have a large property & dog) but I am amazed at people's ignorance - even if you plant a smile on your face they still blank you or try to walk over you - incredible!
Hope you're doing better and many thanks for sharing your story & it does help seeing you live YOUR life. And feeding your cat - I still can't feed my dog, & we're desperate to get her a friend, but I can't really manage her let alone another... Time for an Adjustment methinks, thank you!
I have EDS and use an electric wheelchair, only outside at the moment but they believe I will need it full time. My home is adapted for me and my future needs. I do get a lot of stares especially with tattoos. People just don't move and even in hospital they get annoyed because I take more room in a lift but I love those who wave that use the same wheelchair as me! It means I have more independence so it's so nice but also hard when others see it as annoying but others help. Some doctors ask why I use the wheelchair and don't seem to understand it can be for many reasons.
I enjoyed your video showing the kitchen layout etc. I would love a talk through on the details that you went for. I have mine lowered in places but not open underneath so cook etc sideways on. My oven door opens down but then fold away under.
Hi Gemma - as you say a "its a long story" but in short nerve damage (radiotherapy) and a lot of broken bones caused me to re-think how I get around (thanks to a kindly physio at my local hospital who put me on the right track). My biggest fear was how my friends would re-act - I wish I hadn't spent any time thinking along those lines - everyone has been fantastic. I'm a big football fan and stopped going to "away" games as it was too risky for me. Roll forward to 2022/23 and I'm back doing what I enjoy. But in answer to your original question - first time out was a real eye opener and extremely tiring ...I learnt to "read the pavement" and watch out for things Id never noticed before. 11 months later I'm a lot more confident and wish I hadn't been so stubborn. Getting a wheelchair isn't giving in - its getting on . Keep up the good work xxx
This is the first time I've watched this video. Now I've watched a LOT of your videos and they have been instrumental in improving my wheelchair experience. I'm a very recent ambulatory wheelchair user.
I haven't noticed people really staring at me, but I don't really care. I am so grateful for the opportunity to get around without any pain, I have neuropathy from probably MS and each step is horribly painful.
Like you've mentioned it is so surprising how little it takes to affect the use of the wheelchair. The camber in the roads is SO noticeable. I live in rural area with very no sidewalks and roads that are terrible.
All that being said I am absolutely in love with my new Wheelchair Life! I am so very grateful I can get out and get around, go to stores, go shopping, go to eat, have coffee, etc. It Is WONDERFUL! No Pain while getting around! Yeahhh!
Thank you so very much for your content. It has helped and prepared me for all that I may encounter.
Important and interesting the topics you talk about in this video!
i'm fairly new to wheelchair life, (early 60s.) The hard part for me is travelling. i can't do anything like that on my own anymore. thank god for uber. the hardest part is having to just wait in the heat until the ride comes. i do have a small dog and usually end up worrying more about her than myself.
I got my injury at 18 months and got my first wheelchair when I was 3 so I don’t really remember anything before that. I had friends, I had family I was a generally happy child(A much more grumpy adult though, lol). The most strange thing anyone has said to me was 2 or 3 times as a child…when ADULTS asked me how I could be so happy. Umm…I never had any answer to them. What should I do instead, sit in a corner and scream and yell and cry? I don’t think I noticed people staring as much when I was a child, that came when I became a teenager. Luckily I had my baby sister that I could put in my lap at all times and people would coo over her instead. I do notice people staring now but like Gem said, you get used to it, I don’t really care anymore.
Even though I wish that it never happend, I’m quite happy over mom’s newfound understanding how hard it is to do some things in a wheelchair after she broke her leg recently and needed a wheelchair. Yes mom, vacuuming is a pain in the *** and yes it IS very hard to dust and clean where you can’t reach! Thank you! ;) People can be empathetic to your situation but until your in it yourself you can never ever know for real, even parents.
Same with my mom. She recently had a knee surgery-gone-wrong, and now she has to use crutches while waiting to get it fixed
@@aurorag1710 Ouch, bummer! My mom needed surgery too(a bad fracture in some of the bones in her ankle after a fall) but that was done the day after luckily. But she felt cruches was too unsure with the plaster and she was not aloud to put weight on it for 6 weeks. Today is the first day she can but it hurts too much and they say it will take 6 months until she’s fully well and mobile again…
I hope your mother will get it fixed soon!
@@thetoothfairy7688 I don't know why but half of my message got deleted 😧😧
I also said that she now understands my struggle and pain in everyday tasks because I was born with Spina Bifida and I've been using crutches my whole life...
Better late than never 😅😅
I enjoyed this style and just wanted to say: thank you for being a open kind caring person. No matter who we are there comes good and bad times. Always remember who your PERSON is in this life and enjoy some PERSON TIME. ❤️💟💕💖💓
the fun we had in rehab nobody could go in a straight line we were with a lot " sick" and pitty "people
im getting my first wheelchair soon (hopefully delivered october) ive used shopmobility powerchairs/scooters a couple of times when going for full days out and its been a spoon saver definitely. but ive had times where the battery has gone dead. after a lot of thought and conversations with my (very supportive) mum im going with a manual/active chair with efix for when i need it as my strength and energy levels vary daily and throughout the day (pots and eds). ive gotten to the point that somedays using my stick is putting out my shoulder when i have to rely n it too much.
i cant wait to take my nibblings out for days out, already making plans.
My first outing with my powered wheelchair was picking my 2 daughters up from school. We live rural and I was so nervous I ended up jammed against a chicken coop. Don't ask me how I managed that! I love my chair and am now a smooth driver😂thankyou for your super duper videos😘👑💗
hey there, thanks for sharing
I have like walked with crutches and such for years, and used wheelchairs for long distances like attraction parks and such.
Friends and Classmates and such were just telling me how they were so unaware of all the stuff that comes with using a wheelchair.
Taking different routes, not being able to enter rides with a wheelchair, how to navigate trough cities, crowds and such.
With that I just notice how little people know what comes with less mobility? Same when you have a health situation that requires medical attention on a daily basis.
How much extra stuff you need to take with you and take into account when your traveling and such.
Extra meds, aware of stuff, finding alternatives, more money spend on taxi's to get around etc. etc. Whatever someone needs
My first wheelchair outing was to a store I knew well enough to navigate. No problems there. My second one was a festival of all places. My family is a bit more protective of me on chair days. Understandable because I'm short even for a wheelchair user. It was lot easier than I thought it would be, since I've had wheelchair users in my family before, but definitely more tiring than I was anticipating for a first timer.
I had to use a wheelchair on and off for a while when I was 9, I missed a lot of school as my classroom was upstairs and my mum would have to leave me outside of shops. I also had casts/splints on my legs, not because of an injury but because a problem with my tendons. People would ask really intrusive questions and I would make up silly responses l, I think shark attack was my favourite.
I didnt mind the staring, i minded how people would cut me off from my family members when in a store. Walking right in front of me like I wasn't there. Or not even want to talk to me directly whem ordering at the counter .
I liked the video style very much.
Once I learnt technique with self propelling it was easier than I thought but still hard but it was so hard before the technique
I remember the struggle of wanting to open doors for myself but not being able to and relying on other people to do it for me. That was over 4 years ago. A week ago, I was out shopping with a friend of mine, and a lot of the stores we went to had 2 sets of doors at the entrance - I'm pretty sure that I destroyed a lot of people's stigmas that day, because whichever of us (either my friend or me) got to the first door first, she opened and held it for the other, and the other person opened and held the second door, making it clear to the people around us that just because I'm in a chair doesn't automatically mean I can't open and hold a door (a lot of able-bodied people don't realize that being in a chair doesn't necessarily automatically rule out the ability to open a door - I know that some can't, and there's absolutely nothing wrong with that, but there are also many of us who are still able to once we figure out a way that works for us).
There's a weeklong seminar I go to every summer, and I derive great pleasure from showing the other attendees that I can in fact open and hold a door for people just as easily as they can, because last year many of them thought that, just because I was in a chair, I was apparently incapable of doing so, even if I was already partway through it (nearly got pulled out of my chair more than once, and I ended up using the back door instead of the front door almost every time in one of the buildings just to prevent it; they were a lot better about it this year - don't think I had to ask anyone to let go of the door (them trying to open the door while I'm still holding it throws my balance off so much that if I let go of the door, I'll fall)). The only other thing I had to deal with for that this year was some questions from people who weren't there last year but were in 2020, but those were asked out of genuine concern, and I basically said that my spine's been messed up since grade school and the only reason I didn't use it in 2020 was because it was another 6 weeks before I got it (both perfectly true - seminar was in early August that year and I didn't get my chair until late September). I also finally got a chance to show one particular person that I haven't "become too dependent on it" (whatever the heck that's supposed to mean - she was never able to explain what she meant by that, even though I asked more than once, and she had no business trying to tell me that in the first place anyway) by walking and riding horses in front of her for 3 hours straight (I'm a part time wheelie, mainly using it for long distances on smooth surfaces because my legs will give out on that kind of terrain, but I've pretty much never needed it on uneven surfaces, even for long distances (so never needed it at the barn) - go figure).
I’m a life long wheelchair user, so I’ve never known any different. I mostly just get little kids staring, which I think is totally fine. There are more walkers than wheelchair users and these little kids may not have any family members in wheelchairs. Personally I see nothing wrong with asking why I or someone else are in a wheelchair. Most aren’t asking to annoy us and I don’t ask to annoy someone. I ask because I am a wheelchair user myself and the person I ask may have the same condition, spina bifida. I do understand that being asked might be upsetting, depending on the circumstances, but as you said if that’s the case then just say it’s a long story or you’d rather not talk about it. One of my friends who is in a wheelchair said it was a long story and I accepted that and apologised and explained I wasn’t trying to be nosey, but again I do know that some people are just pure nosey. I’ve had people ask me out of nosiness. I had a stupid woman tell their little nephew that my wheelchair was a tractor. I don’t know why she wasn’t honest and said it was a wheelchair and I was in it because I couldn’t walk. This woman was a former teacher too. Can I also just say that you are very lucky to have your independence, having your own house, you are able to drive, you have your own family, you have a job. Myself and a lot of wheelchairs that I know don’t have that. Also I’m obsessed with your new kitchen! I have rewatched your new kitchen q&a umpteen times 😂 Have you got used to all the bits that weren’t quite right like the tap etc?
Since I was on crutches and leg braces long before I went into a chair, I was kind of already used to people staring at me. So I'd had many years to learn to ignore them.
When I first went into a chair, is shocked at how difficult it is to push on an uneven footpath!
One thing that I've learnt is that when a business says that it's "fully wheelchair accessible", it's best to check for yourself.
This is a fantastic video and covers everything that really effects you when going out in a wheelchair. The finishing message is so right though, it definitely does get easier. You are right you still get bad days but definitely easier.
You learn how to deal with the ignorant people better
I use your videos to prepare for the future. I hope the issues I'm going through now with my current auxiliary aids strengthen me for the future.
I'm not yet needing a wheelchair, but I have large forearm walking sticks. I also have an assistance dog. I'm 26, started to use visible auxiliary aids a couple years ago. People stare and stop me to ask questions, lots of issues with assistance dog. People ask such inappropriate and personal questions! I am autistic and have bad anxiety disorders so it is very difficult! It is slowly getting easier, probably because I live on a remote island and more people are aware of me (I'm on social media).
I’m ambulatory with a power chair and the hardest thing I found was office space doors. They’re usually self closing, heavy, and close super fast.
That people were being nice and staring
Hi, I just recently found your channel from your collaboration with Jessica Kellgren-Fozard and am looking forward to catching up on your videos!
I’m not a wheelchair user, but I’ve been using a cane for a few months due to EDS. I live in Japan and people here are generally way less nosy with strangers than the US where I’m from. So while there was staring from my students at first, they got used to it pretty quickly and treat me normally now. Honestly the staring they did due was probably a combination of me being the only non-Japanese person in the room and also the fact I dress androgynously on top of the cane lol. I teach junior high and they have been nothing but respectful.
Honestly I find the cane useful for non-verbally communicating that there are things I can’t do. Even though I technically can walk without a cane, there’s a lot of things that are difficult with EDS, and I no longer have to try and explain why I can’t do xyz. I just gesture to my cane.
I've been a wheelchair usual since 2020 and I cried at first. I knew I was going to end up in a wheelchair and 12 cause of my scoliosis but I didn't know it was going to be this soon so like I said I cried now I'm used to it
Love ❤❤❤❤❤
When I was first diagnosed with severe arthritis I was given a hospital walking stick. I was 18 at the time, I would not use the walking stick due to being embarrassed. I ended up buying crutches which I thought people would think I was injured short term rather than disabled at 18. I am 41 now and I do not care what other people think. I use a walker, a walking stick, crutches or a wheelchair depending on pain levels and distance I will be doing. I essentially made myself housebound due to not wanting people to see me using a mobility aid. What changed for me was a friends son is in a wheelchair and I thought well it does not bother him so why should it bother me.
My main issue with using my wheelchair is that people immediately see you and it twigs 'oh shes disabled' but when I used walking sticks or crutches people didnt see that. They only saw my age and assumed I had a small injury, and would ask, what have you been up to.
Using my wheelchair has its ups and downs. The world is not made for easy acces for wheelchair users/disabilities but at least it gives me back some freedom.
Also any bigger people hate that ramps with any steep incline are a tipping hell? The amount of times ive tipped back in my chair because my weight overbalances my chair is ridiculous, embarrassing and caused me many an injury.
as i was born with my disability (spina bifida) my 'first time' would have been in the late 70's/early 80's, i have trouble remembering last week so im not gonna remember my first time in a wheelchair lol.
One big problem I have is that my city has cement stairs on each street corner. U have to stay in the road with traffic bc it’s impossible to go up and down all those cement stairs each time you have to cross a street.
I’m not paraplegic but busted my ankle in the worst way and permanently due to an accident but because of muscle disease needed a wheelchair because crutches were an absolute nightmare (the pain, I was mobile/handy enough with them but my arms weren’t up for the task) so of course one day the wheelchair came. I was 18 and my mom and me went somewhere with a bus and she has some difficulties herself so it was far more easier for us to lift an empty wheelchair (well, it was more like that was the only option for us at that time) but the hostile looks I got when I got up from that wheelchair!! It’s like you’re only allowed to need/use a wheelchair when you’re paraplegic or worse. So eventhough the stares that you get when being young (although 9 and 18 are far apart, it’s still both very young for “normal people” to be needing a wheelchair apparently) but anyway, although those stares are very prominent and awkward to notice at first (that noticing and the feeling awkward about those luckily does lessen, indeed), the outright hostile looks still make me “toughen up less” when I need to get out that wheelchair for a second, just to give those vigilant people a sort of proof as to indeed needing that wheelchair… 20 years later I still do that sometimes 🙈🤷♀️
Also, when I started to gain weight the minds of people seemed to be more understanding about me using my wheelchair. Due to some illnesses and disorders I now have a mobility scooter because even those light wheelchairs were too much for my arms to handle. I now have reached the mental era of not giving a hoot and I get the impression that that self-confidence does a massive job at rendering those ignorant or inexperienced people their harsh judgements of whether or not I seem to need that wheelchair or scooter (or crutches, I have a pair with a horizontal underarm fitting since my wrists are way worse than my upper arms, I do use these sometimes when my body allows that type of strain.
Also, I still can’t believe how much people feel… obliged almost to Always cut/cross a line of people right before a wheelchair, not only resulting in those people denying our rights to a bit of personal space above our lap and feet. And also their lack of thought, due to being inexperienced and therefor a sort of lack of (understandable) empathy to some people being outright arrogant of the possibility that that Person/“not a puppet” in the wheelchair might have chronic pain that is worsened by their “just getting through here for half a second (as in that won’t -can’t, even- hurt anyone?)”
But in any case, with whatever troubles we might experience; thank goodness that wheelchairs and other disability aids exist!! I am sooooo grateful that the people that handled my casefile, that those people at least saw my need for those aids because it would financially have been impossible to get it for the full price ourself! Because it truly is something or somethings, plural, that allows for many of us to HAVE a life 💜
When I have to use my wheelchair I find it easy to use why footpaths are on a slope it for water runoff as I used to do tarmacking, so I know why I find family think I have given up but I am in to much pain so I would use my medical aids
Thanks a lot for your videos! They are really helpful for me 🩷
If I am stared at, which does not often happen, I imagine being a cow and stare back until this person feel really uncomfortable and turn away.
My my family with uncles, aunts and a lot of cousins accept my wheelchair and disability. I talk about it very open and answer questions when they come up. My cousin who has similar issues as I have- hEDS- faces more problems that others accept their wheelchair as she is very overweight and ppl think she can't walk well because her overweight.
As I am new to be an ambulatory wheelchair user, I am often nervous about leaving the house. Once out. I forget about my anxiety and enjoy getting around with my Batec.
I am a GP and I have to go to a family doctor conference in Lucerne tomorrow. It will be my first overnight trip. And as I am always nervous to go to conferences, going there the first time in my wheelchair makes me VERY ANXIOUS. But I know if I go there, I will be very proud of myself and full of endorphins.
If I chat with ppl let's say on a train or in a taxi and after some small talk they ask me why I am in a wheelchair- they often assume I have MS - I explain them that I have a rare disease , hEDS, that makes my legs weak, my joints loose and affects my nerves as well. I also tell them that I am fine with my wheelchair, but I am not fine with doctors that gaslight me.
I’m not to the point of a wheel chair yet- I use a walker. It was a big adjustment. But I dove in full force attending our local auto show as my “debut”. And oh the relief!! There were people everywhere using every type of mobility aide.
I anticipate difficulty when the time comes for me to transition to being a part time wheelchair user. One of my walkers is a transport chair, but it’s terrible to roll on plastic wheels
Honestly I can’t compare it but I’ve pushed my mom about and I understand the staring. Like the first time my mom did parents evening in her wheelchair I was very stressed but honestly other than teacher like other kids haven’t mentioned it to me even though I saw most of the students in my year there
I wish I had known how much damage one can and will do when using a wheelchair that isn't built specifically for them and just the generic "hospital type" wheelchair. And how much easier it is to get around in a custom wheelchair than the generic "hospital type" chairs. I would have faught to get the custom chair 10 years ago instead of doing another 10 years worth of damage to my back. Now if I could find somewhere to learn the wheelchair skills I was never taught since I was still ambulatory when this first started and it was deemed "unnecessary" for me to have those skills
The vast majority of the skills videos I've put in my personal wheelchair playlist are from Gem, Wheels2Walking, Paralyzed Living, UWSpinalCordInjury, NCHPAD, and Daniellability. I learned almost all of my wheelchair skills from their videos.
Gem I also take part in charity 5km runs I have a running 🏃♂️ partner to help me get up the hills the last hill most of the runners end up walking it as it’s such a steep hill!👨🏻🦽🏃♂️
I'm from Boston. When people stare i give them the finger. 😁
I totally get it
I am visually impaired and recently started using GuideDog and it really frustrates me too when people block accessible entrances and curb cuts and particularly when they stand in the middle of the stairway so you have to go around them I’m like can you find any more of a hazardous place to have a conversation.
I'm using a manual chair for the most part recently. I'm using it a lot more now and it's so much easier than the power chair to load and unload. Oddly enough, people seem to think I'm more fun/cool/alive in the manual. In the power chair, apparently I'm almost dead and incapable of speaking for myself or understanding or thinking. In my manual, I'm fun and cool. It's so damn weird.
Hi Gem, I love your you tube video's. I am since november 1st 2019 in a wheelchair from Nov. 11th until may 19th 2020 I was in hospitals in Winnipeg Canada. Eversince I have been out of the hospital, I find people are staring and look at you as if they want to ask you questions. But they don't have the guts to ask. Until last week when we where at Mc Donalds and a littile girl, I geuss she was about 5 or 6 years of age. She asked me why are you in a wheelchair? I told her that my legs didn't work anymore, and the doctors were not able to find out why or to if they should operate or not. You should have seen moms reaction. She told her not to ask questions like that that wouldn't be apropriate to do. I answered the mom by saying, these are the questions you should ask instead of staring at people in wheelchairs. And ask the person who is with them what is wrong, instead of asking the person in the wheelchair what they have.
Gem we love what you and your family are doing for us. Keep up the good work and God Bless. Greetings from Winnipeg Canada Jon and Rina van Beilen.