my mum resisted a wheelchair for so long, then she finally got a motorised one and it has honestly saved her life. wheelchairs are such a beautiful thing that so many people associate with lack of independence when in reality it’s very much the opposite. it’s such a beautiful thing x
Well said! Wheelchairs are liberating -- bringers of greater freedom, mobility and independence! I'm so happy to hear that getting one has been so awesome for your mum 💜💜💜
@@jd_kreeper2799 true, but for some people it’s not being able to do stairs or not moving much or very far and I can imagine having a chair could be liberating in some ways.
As someone in the disability community, one of the biggest misconceptions about wheelchairs I see is that they are more limiting than freeing. Using a wheelchair is a energy conservation strategy. I had a PT advocate for me to get a wheelchair when I was 3. My dad was initially against it. He thought it was pointless because I was learning to walk. She pointed out that people use cars to get to the grocery store when they could walk. People don't walk to the grocery store because they want to use their energy in the store not getting to and from the store. She reasoned that it was the same for me. I could walk everywhere but then I wouldn't be able to enjoy myself at my destination because I used all me energy getting there. As an adult I use my wheels when I know I want to be able enjoy the mall or the grocery store or the concert without having to expend my energy just getting inside. I can also walk to pop into the coffee shop or go into my friend's house. People don't realize how valuable that flexibly is.
This helped me a lot. I am currently thinking of getting a wheelchair for myself for the same reason as your comment states. But the reasons Jo stated are keeping me back. So yes this helps, more than you might know.
Great reasoning! I think it's getting close to the time where a wheelchair would help my mom a lot. We went into Costco yesterday and she couldn't shop with me because there were no electric scooters, and even using the cart as a walker would have been too much for her.
One small thing that might help, is expandable door hinges. They’re easy to install and move the door another 2” out of the way, which helps with the scratches and bumps.
It's a rental, so she'd need to get her landlord's permission. Which they might well give; making the property more accessible would make it more appealing to a larger pool of potential tenants. It's worth asking.
@@astrinymris9953 Removing a door is reversible. Most just lift out of the hinges with no disassembly required, so I want tk believe that no reasonable landlord would oppose that, specially if it helps save the doors from damage.
I've removed doors in a rental and stowed them, then brought them back out before move out. As long as nothing is damaged and it is returned to the same condition it was in at move in, most landlords won't care.
I'm a part time wheelchair user. It's a pain management strategy. It's an ultralight, and it's really nice. It's made a HUGE difference in my life, and I'm grateful for having it. I am a little shy about using it around people I know who aren't aware I have it. Side note - if your wheelchair fit you and was balanced properly, you'd probably like it a whole lot more. I also recommend you watch videos by Wheels2Walking and other wheelchair users to learn skills. Then go shopping with it. You'll LOVE not having to walk/stand, and being able to consider what you're buying instead of rushing through it.
I second the idea of fitting the wheelchair properly. If there are local wheel hair repair shops, or occupational therapists around, they may help adjust things. I'm not a wheelchair user, but I work in elder care. I've seen a lot of people in chairs not fitted to them, and it can be very uncomfortable/painful, and can cause issues.
I used a wheelchair for about a year but it was so bulky and hard to get through doors that I gave up. I didn't know there were many different sizes, the person at the rental store told me they were all basically the same width
@@karenak968 Yeah, I'm a PTA (physical therapist assistant) and there's a ton of measurements that need to be taken to properly fit a wheelchair. The biggest issue with an improperly fitted chair is pressure sores. And like you said, it's also more comfortable to have a properly fitted chair. The one she has now will definitely work in a pinch, but for long term use she should probably get fitted.
@@thesphnx6836 Even the standard hospital-type wheelchairs have different widths, but they may not have had them at the store. Those really suck, but they're better than walking when walking causes you pain.
Something that I often find myself thinking is that “I’m not disabled enough to be allowed to use [Some thing that would make my life much easier]” which I’ve found is something a lot of disabled people struggle with. I am mentally/psychologically disabled, so it’s probably a bit different for people with physical disabilities, but I have also heard from physically disabled people that they were reluctant to accept something like a mobility device because they couldn’t help thinking that they were taking that device away from someone who needed it more than them.
This is something that I've struggled with myself. I currently use a wheelchair intermittently not because I have any issues with the musculoskeletal parts of walking but because walking involves standing and my body forgets how to blood pressure when standing if it's more than 80° outside. I have spent so long feeling like if my problem isn't musculoskeletal then using a wheelchair is like appropriating a tool others “really need”. I still struggle with feeling like I'm not disabled enough but then I think about how it's enabled me to walk to dinner for the first time in 7 years, I have felt what it feels like to run down a hill for the first time in almost 2 decades, I've gone several months without a concussion, and I can exist day to day without having to consciously will my body to raise my blood pressure. Those things help me remember that I'm allowed to do this, and it helps me, and that's good
Yeah, I've gone through that feeling a lot. It's worse when your illness is invisible, at least in my experience, because you're worried that maybe you don't really need it and you've just convinced yourself that you're struggling. (Our minds play some really messed up games sometimes.) I think there's a arge fear of stigma and/or confrontation, that we might be accused of faking or malingering, and that contributes a LOT to the thoughts of "I'm not disabled *enough* to use xyz". I know I certainly had several really awful doctors at the beginning of my diagnosis journey that actively ridiculed and pushed back against me for using mobility aids, because I was "too young" and didn't have a solid dx beyond fibromyalgia at the time, so I couldn't *possibly* be deteriorating physically without any medicines or therapies. 🙄 I've learned in the intervening years that basically, if it's going to help you gain quality of life, you're "____ enough" and you are absolutely allowed to have a better life. It doesn't make you less disabled to struggle less. (Good luck getting your insurance to pay for it, though!)
Bit of a tangent but yeah, I had to get a full set false teeth at 21 (basically oral prosthetics) and I always feel a bit off about needing the privacy of the sink/mirror in the disabled stall to fix any mishaps. (still only 22!) But what are ya gonna do? I'm pretty sure no one wants to see that but it's not like I'm legally classified as disabled (Editied to clarify just in case it's not clear: I have to remove them from my mouth and rinse them under the water, at the very least)
@@myca. Oh man, I've been needing a set like that for several years now, but have been holding off. Because of some of my illnesses, my teeth are like, disintegrating from the inside? I've still got most of the front ones, but my chewing teeth are pretty much gone, and I've got all these sharp edges from broken segments. Has the transition to full oral prosthetics been a difficult adjustment? I'm worried about losing bone mass in my gums without at least some teeth there. Yeah, people may not want to see false teeth, but they're certainly not expecting them on a 22 year old, so you've got an excellent setup for some hilarious pranks! 😄
@@OuchingTigerLimpingDragon It IS quite the adjustment, but the more teeth you're able to keep, the better! That'll give the prosthetics something to actually hang onto and there are so many fewer issues that way. And if you're able to keep any teeth on the bottom as well, don't worry about bone loss! I believe a few teeth go a long way in that regard. Getting them regularly readjusted (technically realigning) is actually one of the larger hassles for me since I'm in Puerto Rico right now. Also brushing them is misleading because you think you have less to clean but you actually have more because you still gotta brush your gums and everything! While I'd rather have implants, of course, I'd also rather have dentures than my terrible old teeth. I know what you mean about the disintegration and sharp bits. I used to have to be so careful not to close my mouth the wrong way or... crack! Broken tooth bits. But now I can chew most things that aren't like straight up gum or taffy, of course. So far my best experience has been biting directly into ice cream and chewing it with no pain!
I have a tip for making it easier to fit though doorways in a wheelchair! You can make your chair about an inch narrower by changing the handrim position. There a 6 tabs that connect the handrim to the wheel. Each tab should have two holes. It looks like your rims are in the long tab position (the hole at the end of the tab), so you can switch them to the short tab position. You can take the wheels to a bike shop and ask them to take the handrims off and screw them back on in the other hole. Unless you have a lot of experience changing bike tires, I don't recommend trying it alone at first. It's easy to get stuck or pinch tubes.
Or you can also tweak all wires in the wheels as I did for mine. I have changed the width of the seat about 1 cm what my chair was made to be changed. And then those wires and now I can fit into even those most narrow door frames in our country (about 60 cm). I have like 3 mm gap there, but I can fit :D
I'm an ambulatory wheelchair user, and I understand and recognize SO MUCH of what you're saying here. It's stuff I had to deal with when I finally got my chair after having my condition for literally a decade - even though, like you, I have friends who use wheelchairs and have never thought the things about them that I think about me and my use of a wheelchair. And right now, as I'm injured and therefore using my chair more often than usual, I am having to deal with the feelings even still. It is so common not only to internalize "disabled=not-good" and "visibly disabled=even less-good", but to internalize the idea that "fighting through" difficulties on our own feet and not "resorting to" using a wheelchair proves a strength of character somehow. Like, if I could limp along awkwardly and screw up 18 other muscles doing so, that would still be better somehow than using the chair that saves my strength, my energy, and my muscles/joints because using the chair is the "easy way out" or something. Wheelchairs for some reason slam up against internalized ableism way harder than so many other tools/aids/strategies in ways that are really hard to unpack. But recognizing the feelings is the first step to processing them. I will say that part of what helped me when I started using my chair was realizing how much easier it made certain things. (Some things it made harder, with hauling it into and out of the car and whatnot, but still). ALSO if you find yourself using the chair more and find that it's helping you, you might want to look into wheelchairs meant for outdoor activities. I have a relatively inexpensive lightweight electric wheelchair, and I can go hiking and galavanting through Europe in it. Hell, I even joined a curling league because my internal ableism process included deciding that I (who had never been athletic in my life ever) needed to become a Paralympian and that was one of the only sports that can be done in a power-chair. I have friends who have manual self-propelling chairs that they can definitely hike and enjoy the outdoors in.
Thanks for being honest about your feelings. It helps me not feel so guilty when im mad about my situations and frustrated. Sometimes it is hard to fake it. Im sending you a hug. 🤗
I've had those feelings about my ADHD meds, I've had teachers tell me that my meds were unnecessary (same teachers berated me for not being able to keep up with homework while unmedicated), the media has always conflated taking them as prescribed with substance abuse or with bad parenting and becoming a compliant zombie... I need them to get out of bed in the morning, I take them for myself when I remember to take them.
I feel that. My functioning is basically zero without my medications for ADHD. I'm glad none of my teachers have said my medications were unnecessary because I would've slapped them across the face.
this is strictly coming from a place of love and support and not intended to shame you in any way, but in my country adhd medication is illegal bc our lovely government (/s) conflates all stimulants as drugs for fiending junkies and nothing else, so if you have adhd you’re basically fucked. i struggle with daily tasks soooo fucking much and i hate feeling inadequate and pathetic when i just can’t make myself do something i’m supposed to do at my big age of 25 and it’s a daily hourly STRUGGLE. i wish i could have access to medication. with luck i might be able to emigrate sometime next year and the first thing i’m doing when i get insurance in a more free country is get a prescription for my adhd. i hope this helps you feel more grateful for having access to life saving medication.
@@DeathnoteBB caffeine is legal lmao but any amphetamine derivatives are conflated with basically crystal meth and banned. i believe strattera is legal but no pharmacies ever order it so that’s inaccessible too.
I’m a non-ambulatory wheelchair user and that tip-over made my heart stop. Happened to me waaay too many times in the beginning! Honestly I hate the way that people view wheelchairs. They aren’t limiting as long as places are accessible to them, they aren’t stopping us from doing things we want to- it’s exactly the opposite. I’m not bound to my chair; my chair is what allows me to go literally anywhere, even two feet to the left in my own room. I’d be bound to one spot on the floor for the rest of my life without it. It’s just that simple. Congrats on taking this step that you needed to! I’m sure that it will feel more natural in time 💙
Jo, you could be anywhere else doing anything else and you choose to make honest, informative videos to educate and to make people feel not so alone. Thank YOU!
@@FootlessJo I just found your channel and I wish I had found it a few years ago. So many of the things I’ve struggled with are the same as or very similar to yours. This including my drive to be active and busy and my body’s inability to cooperate, as well as I struggle too use the aids devices that I would benefit from and need. Thank you for sharing so honestly. I don’t feel so alone ❤
Purple is the color of royalty, it’s fitting that your chair is purple. You are a queen and deserve a throne to rest your body. Much love and good vibes heading your way. Thanks for sharing with the world.
I am so proud of you! Internalized ableism is more difficult, for many of us, than that of others! I’ve been using a chair for almost 20 years now and after a previous life as a long-distance runner cyclist and both competitive rower in college and white water rowing as an outdoors person, I have’s recently started having to use a white cane also because my denial is finally weak enough so that I can admit that I don’t see well and a white cane is necessary. It didn’t hurt that my neuro--ophthalmologist finally said that I was legally blind and give me a referral with the Oregon commission for the blind here in Oregon. I just wanted to say thank you and give you an atta girl! For many of us, it is the internalized a ableism that is far more difficult than anything others could say or do. And yes, a year from now, you will look back at this with a different perspective. Again I am proud of you for making the change it is a sign of growth not a sign of weakness!✌️💖🌈🐾
I just want to say that I am actually SO GLAD that you, as a disabled person with a large platform, are talking about this experience you're having with internalized ableist thoughts. I don't have a mobility-related disability, but following disabled content creators with a variety of different experiences with being disabled has been hugely important in my journey of accepting my own disabilities, and having those creators acknowledge the insidious beast that is internalized ableism is so important too. When I think about some of the things I've thought about my own disability (does this make me less of a person? Am I exaggerating my pain? Is this my fault? Am I a burden to society?) I sometimes wonder if I am a terrible, bigoted person for having these thoughts, even against myself. I think it's important to realize that these views on disability are fed to us quietly and consistently from so many places throughout our lives, and I think they stick in a special way when they are relevant to your own life experiences, even if consciously you don't believe these negative things about other disabled people. Thanks so much for voicing the feelings you're having.
Yeah. Like you, my disability is not mobility-related, nor is it visible, but that stuff about how she doesn't think of Annika as lesser, even as she thinks it of herself, I felt that too. It might be part of a poor general self-image in my case, but I am absolutely ableist towards myself in ways I'm not to other people.
I have psychiatric disabilities and illnesses, but no visible disability. I put myself to much higher standards than I would someone with a visible disability, like someone using a wheelchair. I feel guilty when I call my mom for support when having bad anxiety, but if Jo would say her leg hurt and that she'd need to sit down or use the wheelchair, that's totally fine and legitimate. It can go so far as me wishing I'd rather have a visible disability, like paraplegia or amputation, than the psychiatric stuff I have and have had for decades, because if you can't see it it's not really there, right? If I say I can't do something because of depression/anxiety it's just me not being strong and challenging myself enough, maybe even me being lazy and exaggerating my problems, but if a paralysed person says they can't walk up a stair that's legit. I hate when OTHER people don't see or respect my invisible disabilities, but I realise I've internalized their views and don't validate my OWN struggles just because they're not visible. Maybe if I started respecting my own boundaries, others would too? Or they never will, because I (quote by my psychiatry nurse) "look to healthy". Doctors think it can't be as bad as I say when I'm well-dressed, talkative and don't cry - not realising this is my highest level of functioning and that I've been pumped up for this appointment that was the happening of my day/week, and I'm just gonna rest and be depressed the rest of the day when I come home. Sometimes I wish I had a sign in my forehead that said "much more ill than you think!" and that people would actually believe it...
@@SamirCCat Asthma can be that way too. I’ll look totally fine one minute, and have an asthma attack the next. Some people think I’m faking it, which makes the stress of it all so much more worse. I believe you when you say, if you had a sign, it might be easier. Don’t be so hard on yourself hon, the world is hard enough on you as it is.
I remember you talking about wheelchair feelings when you were at a conference in your walking crutch phase and as power chair user my whole life I said: "This is worth working through Wheelchairs are amazing and liberating." So I just wanted to say I'm proud and happy for you.
I am able bodied and agree that the wheelchair fall looked terrifying. Like that one irrational fear of going full extension on a lazy-boy. She seems fine, seeing how the video continued. Jo probably kept that fall in the video due to it being almost cartoonish in nature of how she ended up. It does make me wonder if I were in that situation, would I start wearing a helmet, at least in the beginning of learning how to use a wheelchair?
3 years ago I had a major stroke that left me with mobility issues I can still get around but I need to use a cane or I'll lose my balance and fall. Every time I go to the veterans hospital it feels like everyone there wants to get me in a wheelchair. I resist this with a passion. After watching your video I feel like I do this because I don't want to acknowledge my disability I don't want to advertise it I want to ignore it the people tried to get me in the chair aren't feeling sorry for me it is what it helped me and I need to learn to accept help
I know someone who is an artist, who painted the back and seat of their wheelchair with fabric paint and added patches and embellished it with rhinestones I think a lot of people with Ehlers-Danlos (like they do) have some very complicated feelings about using wheelchairs - I don't know how much you're still painting, Jo, but personalisation definitely seems like a good idea!
@@aim-to-misbehave5674 I... I know this isn't the case, but for some reason I thought the rhinestones we like, on the sitting surface and was just... "Wow that'd suck to sit on for an extended period."
yess! when I was younger I had a walker for mobility and it was completely covered in ribbons, stickers, and bedazzlement. It definitely made me feel more confident and exited to use one :)
When I was in a wheelchair I called it “zoom zoom machine” to make it feel more positive and fun to myself. It wasn’t cute and purple like yours! That’s so awesome. I hope you can find some positive things to associate your new wheels with to help you through this mental block.
As an amputee, above knee, that can't wear a prosthesis due to nerve issues, I use a chair to get around. Remove the footrests so that you can use your leg to move the chair around. It helps a lot. Good luck with the new chair!
Ohhh I feel this viscerally. Before I was diagnosed, I was often told I needed to use braces or crutches or wheelchairs. I was bullied so much (because kids are awful and they all thought I was doing it for attention) I wouldn’t leave the house if I needed a mobility aid that was visible. Didn’t matter what level of pain I was in. Even now, in my 30s, I hate using a cane or wearing a brace…heaven help me if I need a wheelchair at an amusement park when I physically can’t walk the entire time. The emotional toll is REAL. I don’t think other people are less (just like you said) but I feel like I’m attention seeking if I allow myself to use aids that allow me to interact meaningfully with others. It’s a tough journey
I’m a part time wheelchair user. I only use mine when I leave my house (because of chronic fatigue-like symptoms). Thank you so much for being vulnerable and honest. Coming to terms and dealing with internalized ableism is honestly such a horrible, uncomfortable, NECESSARY thing to do. 💕
Jo, I'm continually impressed by your willingness to admit to emotions, feelings, ways of thinking, etc. that you feel shame and guilt around! I have been watching for a number of years and have felt really moved by seeing you learn and change (I'm remembering things you've said about your past views on LGBT and the learning/unlearning you've worked hard to do there). Your concern about feeling like less of a person, or of others seeing you as less of a person in a wheelchair really hit home for me. I'm not a wheelchair user myself, but I think in the past I did have some of this unconscious bias towards people in wheelchairs. I didn't want to be caught staring so instead I ignored and thus shut out and excluded people in wheelchairs. A number of years ago my father spent some time using a wheelchair while recovering from an accident and it completely shifted my mindset. It seems like a simple realisation when I write it out, but it felt quite profound to me at the time, that it's not rude to make eye contact and smile at someone as you walk past them in the street, it's not rude to acknowledge their mobility aid when it's relevant to the situation, and that it is in fact much more rude to ignore it and treat it like a taboo. As you have done with sharing your experience of using a prosthetic leg, I hope that you now sharing your experience of using a wheelchair can help many others to have the same realisation I had with my dad about the normality and full humanity of people in wheelchairs. Sometimes we need to have the personal connection to the "other" experience to realise how much it actually isn't "other", it's just an addition that doesn't erase all our similarities and worthiness of equal respect and "normal" interactions.
Wheelchairs are a resource! I love using my chair when I need it because it allows me to do the things that are actually important to me - kinda like the spoon theory. Glad you like the chair! I know it doesnt fit perfectly, but its a place to start ❤️
As a fellow member of the wheelchair mafia, it always feels great to pass on my chairs that I no longer need. And it is a great place to start. I've seen much poorer fits!!
Having a spare helped massively when my teen nephew had his Tib/Fib broken by a thug on a school sports field. He's now walking and almost back to how he was.
I am 24 and just recently starting to use a wheelchair. I have a few disabilities, but chronic pain is the main reason for me getting a chair. I still feel like ‘I’m not disabled enough to use this’. Even though I have days I’m in so much pain that I cannot move much, yet some days I can still go for a hike. Society says if you use a chair it’s because you cannot walk without it, which is far from the truth. It does take a lot to be comfortable using it, I am still getting used to using it in public. And I am also kicking myself for not getting one sooner. You are far from alone, it truly does help to see others in this world going through the same struggles. You can do this!
Hi Jo, I very much resonate with your feelings. I am an ambulatory wheelchair user. After having a disability my whole life .I have to say getting a chair was one of the hardest things I’ve ever done. My family was very against it, to be honest they still don’t understand (lots of ableism). I felt ashamed and like I had failed. A few years on I think it is the best thing I could have done. My pain and fatigue is a lot better. It took me awhile but I realised that there were no prizes for punishing my body. I am more independent not less and my cat loves that I have a “travelling lap” for her to jump on. 😂 I think it’s okay to feel all the feelings about it. It’s a big transition and yes sometimes the internalised ableism is strong, but that’s okay. You deserve to be comfortable and do what works for you. I encourage you to be gentle and kind to yourself. Also wheelchair survivalist tip: the world is more “slopey” than it looks and momentum is a thing. Your brakes are your friend. xx
I’ve been an ambulatory wheelchair user for about a year, for pain, fatigue and presyncope management. Honestly it’s been a godsend. One of the most important things for me was to realize not only how much easier individual tasks are, but how much my wheelchair actually facilitates me doing the things I really enjoy. For me, that meant that if I didn’t have to spend All my energy cooking or cleaning or shopping, I could spend more time playing games or hanging out with friends and family. I really hope you see a similar effect!
You inspire me not because you're disabled but because you face these biases and bad feeling we all have but don't want to deal with thank you for sharing your thought process ❤️
I do understand the internalized shame for having to resort to something you didn't want to - but there is absolutely no shame in doing what is best for you to allow yourself independence. The chair is super cute and if it helps you then that's all that you need to care about. Guaranteed if anyone is judging you they're not worth your time anyways. Love your mental health discussions 🥰
I went through a similar journey six months ago when I got my chair. I had a convention coming up, and I realised instead of looking forward to it I was dreading it, because I knew within half an hour of being on my feet I'd be grumpy and in pain and a massive buzzkill for my friends. So I bought a wheelchair second-hand. I've had that exact same full-body feeling of relief so many times, sitting down and knowing that my legs have done all they need to do for now. I was fortunate to have had a best friend for the past few years who has progressed from part-time to full-time on wheels since I've known her, so I'd already started deconstructing some of my learned ableism about wheelchairs, and I'm even luckier that she was willing to help me work through my feelings about my own wheelchair journey when I came to that point. The community you surround yourself with is everything. And you're absolutely right, using a wheelchair doesn't make you weak. It actually makes you strong - you should see how powerful my arms are now!
Belated welcome to being a wheely Jo, it's so good here, we get to go zooooom down the slopes and we can do spins and we can go lots of places without pain or fatigue!!
💙 I'm sorry you're going through that, Jo. When I was put in a wheelchair a couple years ago, I was afraid I'd never get out. It felt like I'd failed somehow and would be trapped in a metal cage. Then I got the chair, sat in it, and realized how amazing it was to be able to move so easily. Instead of feeling trapped, I felt liberated. My mobility and quality of life improved. I get how you feel, because I used to feel that way. Thinking of the wheelchair as just another tool in your toolbelt might help.
My dad struggled with his amputation and the whole wheelchair thing. He too felt that people would see him as less and week. He saw himself as a “cripple” and felt pity for himself. I am proud of you for confronting your feelings. You are strong and courageous!
I’m an OT who fits people for wheelchairs and this was amazing insight into how patients feel. ❤ (Also make sure you get it fitted to your body proportions and make necessary modifications if you can to avoid shoulder and upper body strain/ injury. It’s very common in arm propelled wheelchair users)
It’s been a mind blower for me when “someday” actually showed up and knocked on my door. And I am that “someday” person. We’re all getting older Jo whether we’re prepared or not. You’ll slay that chair. I’m glad you’re gonna give yourself a break, not only to rest your tired nubbin but to give your spirit a break from “the shoulds”.
It's amazing how much easier it is to accept and empathize with the struggles of others than our own. Thanks for this. I need to rethink my prejudices that prevent me from having a more comfortable life.
Wheelchairs can be so loaded, many people see them as a failure when in fact they’re the key to independence and key to a more active life when having struggles with mobility on your feet. I’m an ambulatory wheelchair user as of almost 9,5 years now because of EDS, and for me my wheelchair has meant I could attend concerts, I was active in a disability rights NGO for some years, I can run errands independently, attend expos etc etc etc. Without my wheelchair I’d be extremely limited with what I can do and not, and for how long, not to mention the repercussions afterwards from overdoing it along with the risks of falling and so on. As an ambulatory wheelchair user you have a choice to some extent with how much you use the chair, you can use it just to handle situations where you’ve overdone it, or you can use the chair to preserve your energy and “save your steps” for times where you can’t use the chair. I use my wheelchair close to full time when I’m out and about, but I walk at home because I want to keep my leg muscles and my apartment isn’t perfect for wheelchair use even though I could make it work if I have to. I can also recommend you practice balancing in the chair, with some cushions or a friend spotting behind you to prevent injuries. Find your sweet spot and maybe even look into if you need to have the big wheels moved if possible, where the sweet spot is, is highly individual which is why no two custom chairs are the same even if two people use the same model. If you’re really struggling and falling backwards often, you probably need to have the axle a bit further back and you might even need to consider anti-tippers to begin with until you get used to how your chair works. I had anti-tippers on to begin with when I got my first chair but now for the past 9 years I no longer have them, not even when I’ve changed chair because I just know the chair and my body and how to balance in a wheelie. Balancing in my chair is even one of my autistic stims, I do it a lot when just waiting for something, thinking while in a shop, waiting in a queue etc. I even do it with a full shopping basket on my lap and I can sit and balance with just one hand on a push rim, it’s just second nature to me and I find it comfortable and soothing for both my body and mind
I got my first chair at 11. I wasn't a fan until it became a way to get around the mall and other long distances. Then the freedom was worth it. I am still ambulatory 20+ years later, but much less than when I was 12. I still use my anti-tippers to this day.
Bravo for being self-aware and honest! I never thought about the fact that even disabled people could have ableist thoughts - that's interesting! Changing your own thinking is a mental and emotional journey - wishing you all the best!
I felt the same when I got my hearing aids at 33. It took a lot of swallowing my pride and courage to admit that yes, I have a hearing loss that requires a medical device to make my life more comfortable. It took a year for me to pluck up the courage and ask my GP to refer me to the ENT department and another 2 YEARS before I got fitted ( Covid lockdown did not help), but during those 2 years of waiting to be fitted I realised that I was really struggling with my hearing!! With masks being mandated, I discovered pretty quickly that I'd been compensating by lip reading and not actually hearing the words that are spoken to me. I've had them for almost a year now and whilst I have enjoyed having my hearing improved and hearing birds tweeting for the first time in who knows how long, it made me realise that I am now physically disabled and it took ages to come to terms with!
I got my first glasses at 14, I probably needed them years earlier, but I was really good at compensating. I even passed my eye tests at the doctors with 20/20 even though my glasses were reasonably strong for a first pair of glasses. I never had issues reading the board in school, even from the back. I my brain somehow learned to automatically interpret whatever letter is was based on the shade of grey that the blob was. I didnt even notice until I got my first glasses. I lost that skill so fast after I didnt need it anymore.
I absolutely love your honesty here. It's difficult to confront ANY internalized prejudice, but especially one that holds you back from being your best self. It's challenging to be honest about internal conflicts and I really admire your character and ability to recognize "this is where I am right now" knowing that you will grow beyond this moment.
Gosh chronic pain is so complicated. I have severe nerve pain in my feet that doesn’t prevent me from doing any activities, just gives me like 8/10 burning pain if I push myself too hard (by that I mean walk more than a quarter mile). Finding that balance is so tricky, because as you mentioned, putting yourself in that much pain that frequently takes a physical and mental toll. I really really feel for you and I’m proud of you for sharing all of this ❤️
Jo baby! Consider the chair as just another deadly weapon in your arsenal of day to day devices to do life with. Like crutches, your prosthetic... Push past your feelings, you're an inspiration to so many, able, and differently able people. More power to you 👍🏻👍🏻
Oooh dear... if feel ya! I was 28 when I got my wheelchair bc of small fiber neuropathy and I couldn't walk anymore... How much I hated it... how much I love it now! 24/7 nerve pain is killing... and even in my Purwhee... purple wheely (as I call "her" 😉) I feel the pain, but I can be the mom again who goes outside with her kids and can go out for a day! Wich I can't without... It is another thing to accept... like we always have things wich we have to accept over and over again... (and to see it by others is different then using en seeing yourself in it!) And purple is cool 😎 💜 You are gonna love it, but it takes some time... Much love from the Netherlands 💖 🇳🇱
Hey Jo! I get the feeling you've had about the wheelchair. I was given one by my disability benefit. I've used it only in my home and rarely until recently. One, I went to the zoo with a friend, and the next day I could be productive. Two, I fell on the end of my stump and needed to use it for the whole 2 weeks of healing. It has been so tough getting over the perception of a wheelchair. There are so many stigmas around a wheelchair, but when you realize how helpful it is as an amputee it's life-changing. Can't wait to see you get through these emotions ❤️ You are the reason I finally decided on the amputation, and you've been a huge inspiration. I'm proud of you for taking the step towards accessibility
I just got my second chair since my amputation, I use it every day at home. It's a god send for middle of the night potty runs. Also it doesn't matter if you're walking, rolling, or crutching, you are still beautiful.
Sorry if this sounds weird, but why two wheel chairs? Is it one of those situations where it is more convenient to have them in separate locations? Or do wheelchairs have different type for different situations?
I’m a disabled Army veteran. Hurt my back from the ruck sacks in 2007. 15 years of pain 24/7. I hurt myself for the freedom of our country. I’m not ashamed of having a handicap tag or use a walker to get around. I’m about get a new spinal fusion soon. Don’t be afraid to embrace the tools that can make our lives a little more comfortable! Been confidant in who you are!
That probably would've happened anyway =/ Maybe while hiking, or just going to work/school with a backpack, or maybe even just stretching while getting out of bed (like me). Spine injuries suck and it's kinda cool to be able to "blame" it on a specific cause/event but injuries from wearing a backpack are things that would've probably happened anyway. Unless you somehow knew that you shouldn't be wearing backpacks anymore after the first time your back was sore after doing it (which is seen as perfectly normal as it usually is). I was never in the military but always wore backpacks (duh! school, etc) 🤷🏼♀️ I didn't know my discs were weak, how could I? It's great that you can get benefits for your injury as it technically happened "at work" though. Hopefully you'll be way better after your surgery (and following PT). I can only wish I could afford good doctors and surgeries, sadly with just my husbands salary we cannot even afford health insurance (in our city it's $1000/month/person for the kind that doesn't come with a high deductible =/ ) and because he works we don't qualify for any help.
@@lightblue254 I don't know. I doubt that a surgery in Canada would be all that much cheaper. Then of course I'd have to get there, rent a hotel there, husband would need to take time off work to accompany me, etc. No way we could afford it =/ I'm hoping he can convince his boss to pay for his insurance and we could just buy the $1000/month other half. Then I can get treatment right here in NYC. US healthcare sucks! If we were to divorce I could go get on welfare (medicaid) and have stuff done for free, would just have to wait. And the doctors wouldn't be great but then again the insurance the city offers* is probably limited too =/ Ridiculous. * there's only 2 options for buying private insurance in NYC. Good insurance (humana, blue cross blue shield, aetna, etc) won't insure a private person, you can only get good insurance through an employer. 🤷🏼♀️
@@d-meth Wow, that is cruel, are you sure it won't be cheaper to just go to Canada? You could do it on a holiday without having to literally divorce your husband... Current US Healthcare indeed sucks
I understand the feeling about the wheelchair. I had the same feelings early on. I got taught though by a fellow amputee it’s just a tool to live. That’s it. It doesn’t define me or limit me. But I know it’s hard. It feels like a defeat. But now I have no issues personally using mine. All your thoughts on using the chair though are perfectly normal. Stay strong
Confronting internalised ableism is really hard. I'm so glad you're doing it publicly because it will absolutely help so many others who are struggling with the same things. It does no one any good to keep feeling the shame inside. Brene Brown says that the only antidote to shame is empathy, and allowing empathy for yourself feeling things that you dont like is so important
I have MS and use a cane when I need to. I'm still trying to get over feeling weird about it. Gotta let my ego take a break. I’m sending you love and virtual hugs! ♥️
The ego, or personal stigma of what others may think, is definitely the hardest aspect of most any change; when as it turns out, a lot of folks don't even notice, or care. It tends to be worse when little kids start asking the questions, and their parent, older sibling or guardian tries stopping them, when one is willing to teach them about why they are in their current health condition.
I don’t have MS but have been wanting to get myself a cane for my bad pain days, this has really helped with how I think about it, I love ‘gotta let my ego take a break’ ☺️❤️
I can't speak from personal experience but I watched both my mum and my teenage daughter go through a similar process of resisting mobility aids because it would be 'giving up' in some way to acceptance that this is maybe where they're at right now and finally embracing and enjoying the different kinds of mobility aids that gave them the ability and the energy to do more of the things they really wanted to do. Mobility aids can be an unbelievably positive thing for so many people, but it is a very personal journey. Jo, I hope your new wheelchair lets you have more good days.
I worked for about 10 years with a person who uses a wheelchair. This person had two wheelchairs so one day we went for a walk. Using a wheelchair is a skill. Anyone who thinks it isn't should do a walk in a wheelchair down the street and around their community (if it is safe to do so). It is alot more challenging than I ever thought and I never thought it was easy to begin with.
Maybe because you didn't have a wheel chair to begin with is because you have problems. And honestly who cares what people think of you. I live in modular housing and am on disability. In societies standards I'm at the bottom of totem pole. But I don't give a fuck
Thanks for putting that all out there. I was set up with a chair right after my amputation, which seems weird now that I've met other amputees, but with a leg infection, "revision" and poor starting prosthetic, it has been super useful. Even now leg breaks are nice. It's a tool. BTW, there should be anti-tip devices in the back. Might have been removed or maybe just flipped up out of way. Those will keep you from the unexpected whoops!
I really appreciate this insight and hearing you talk about your internalized ableism. I sent this vid to my mom who is needing a chair and has been putting it off. I hope your wise words help her overcome how she's feeling. Thank you for the great video 💜
I’m so glad wheelchairs are a tool you can and will benefit from. A few tips I have as a longtime wheelchair user is probably to but those Lino desk chair mats u put on floors on ur walls to avoid damage, or you can use a pool noodle on ur casters, learn how to master your wheelies if you can, they can get you over a lot of obstacles and try to take frequent pressure brakes by grabbing ur seat and pushing up if you can (recommend ever 30 mins but I do it less)
I completely understand how you processed what you can do and that you don't want to be in a chair. That said, I have a friend who lost his lower leg in the service. He too uses his prosthetic as much as possible, but he loves his chair. He treats it the way some people use extra cushions on the couch. He even has scheduled chair days and times to rest his leg for other activity. Hope you find you happy place with the chair and keep being awesome
I can totally get what you felt that way. If you look at it on the flip side, this will give your nub time to heal between uses, meaning more time to hike! 😁
I truly understand and feel your sentiments in this. I tore the ACL out of both knees in my youth, and recently reinjured the right knee, tearing the graft completely. I have had Dr's offer me mobility devices numerous times, and fought the mere suggestion for the last 20 years, even when, admittedly, there have been numerous times in my life that using a wheel chair would have saved me some wear and tear. Now I am in a medical gray zone, possibly too much deterioration of the knee joint to replace the ACL again, while also being told the OA deterioration and my age(lower than 60) rule me out for knee replacement. This leaves me with the choice of using crutches, everywhere, and the wear and tear they can do, or asking for said mobility device/wheel chair. On the plus side, all of this is on someone else's dime, save for the possible need for a motor assist if I end up with a chair. And every time I think about a wheel chair, the rejection thoughts I deal with are overwhelming. I hope that this works out for you, and the challenges are easy to overcome.
You always appear and help me through some of those rough moments in my learning to actually accept my 'hidden' disability. It helps knowing that I'm not the only who thinks and feels this stuff about myself.
Oh yes! I definitely felt all the feelings you are going through now. I went from being a 16 year old athlete, to being injured, to a wheelchair-bound to now even pretty much bed-bound at age 33. Feeling less than, feeling weak, especially since I was coming from an athletic background, going to trainings (I switched to teaching the little kids from my chair) and going to competitions, was definitely the hardest part. I also had the exact same feelings. And I didn’t want to be seen in my chair because I felt less than/weak. But now, after all those years, I can’t even imagine still being on crutches. Now my chronic diseases also have spread in such a way that I am not even able to use crutches anymore. But allow yourself to feel those feelings!! That is a very important step. I even had a “fight” (words) with my PT (whom I loved very much!! & that’s probably why we had intense discussions about it) about not wanting to commit to a chair. The only place I was kind of okay with it was in the rehab center I was in at the time. And that place was pretty much full of people in wheelchairs, that is why success kind of comfortable in my chair there. But please, don’t feel ashamed. Feel the feelings, work through them (with a therapist! Mental health therapist of course is good too!), it is hard work, but I know you’ll get there. You are strong, so strong you are able to share your negative (and positive) emotions all over the internet.. I know you’ll get there! It is just a process to get there. But I KNOW you’ll get there! Sending much love!! ❤️
My friend from highschool has lost a leg before when she was little I found your channel during when I was in highschool and I thought to my self why not recommend this channel to her and now we are both in college together and ever since then when she felt not in the greatest of moods you make her days feel a lot better and you definitely had inspired her every single day and we both thank you for doing so even though you didn't even know it we love you keep up the great work we love you ☺️❤️🤗💜
Totally feeling this. Im a recent LAKA and have been in a chair since the surgery. It’s a cheap chair that is heavy and awkward and is simply too unwieldy to get into my car without assistance when one legged. I was avoiding looking at upgrading to a lighter more specialized chair like yours because hey I’m getting a prosthetic and won’t need it. Now I’m using my new prosthetic and that’s going great but mentally realizing that yeah I need to find the money to get a custom or semi custom chair made for me that will disassemble and give me my mobility should I need it.
I've been in a wheelchair, I get your concerns about people talking to you differently (it does happen) but people who do that are people who don't see you for who are, and I they do that they are people who don't matter. This wheelchair is for you, to help you and if people judge you shame on them! Your wheelchair will mean that you can do stuff on your bad days, it will allow you to move without pain. P.s wheeling in rain is horrid but ramps are soon much fun going down! Lol.
I’m going to have to be in a wheelchair as my disease progresses. This video really helps to realize the good and bad. Thank you so much for all you’re doing, and all you continue to do. You are amazing and wonderful Person Jo 😁
Wheelchairs are amazing - do try one for “early” bad days… no idea what disease, symptoms etc. but wearing yourself out and hurting yourself by avoiding them is never good.
Dang this came at the perfect time, I just scheduled in to go look at options to get a custom wheelchair. I have hEDS and my hips are spiiiicy so it would be a great tool for longer outings when my cane doesn't cut it but hoo boy I have ✨feelings✨ You got this, and purple is the best colour hehe 💜
About a year ago I was diagnosed with a few different chronic illnesses, one of the big symptoms is chronic pain which reduces a lot of my mobility. I have been using forearm crutches for almost a year now and they definitely make my life easier but they aren’t always enough. Unfortunately I really hate that I have to use them even tho they help so much, and knowing that I’m going to need a wheelchair is something that I both look forward to and dread. Seeing you verbalize your feelings and them being similar to mine has such a big impact on me. My mental health has suffered a lot recently as well and seeing you go through similar things makes me feel something I can’t quite explain. Seeing someone who struggles like I do is such a great comfort to know there are people like me and my problems aren’t only mine. Thank you for making this video Jo, And thank you for talking about just your life in general it has made my life a bit easier and I truly appreciate that.
That’s a good friend right there, taking you out of your comfort zone for the better :) There’s no shame in using whatever accessibility equipment works for you. So happy to hear it’s beneficial to you! Anything that makes life easier 😫
It’s so healthy and honest what you’re doing here- admitting you’re having feelings and perceptions you dislike but are working on. You take responsibility for your personal growth and your life and that’s so wonderful. I wish everyone did that.
It's awesome that you can be so transparent. I think "purple persuasion" will GREATLY help you first physically and then eventually mentally and emotionally.
Just want to say, you are my hero. Your willingness to share your darkness, makes your light even more dazzling. Never be afraid of your weaknesses; they will become your strengths. hugs!
If I go through this, I'll be the second person I know going through it, after watching your video and hearing your perspective on being a recent wheelchair adopter. (Side note: I like the community vibe that always springs up in these comments sections, everyone is so supportive!) And I really think you managed a lot of zen out of this topic, despite the initial thoughts and practical difficulties. Your talent as a presenter and sort of a mentor to others comes through here. To Jo and to anyone reading: Be safe out there and thank you all for being so nice! Brightens my day a little, makes me feel calm and well. Wishing the same to you all!
The thoughts and emotions in this video are so incredibly raw that it compels me to smile. The part about you being infected by the ableistic standards of society is powerful.
Hi Jo! I just wanted to say thank you for talking about this. I am a young person with chronic illness and accepting help where I need it has been a really hard journey. I have struggled with internalised ableism and have felt really guilty for feeling the way I do. Hearing someone talk about it is vary comforting. Despite this difference in our disabilities I find your content so helpful and you often make me rethink my own internal thought processes and feel more accepted. I hope you find comfort in the use of your chair and it allows you to be in less pain and restriction. Thank you for your insight as always!
I've been having the same internalized abelism with mobility aids myself. I have a lot of mystery joint pain to where it's painful to sit, stand, walk and do anything, and I've been, honestly, really scared of getting a cane and keep saying "I don't even need that, I'm not 'that disabled'" but I know that's internalized abelism and isn't something I'd think of my school friend who has a cane, but I'm really having to fight with myself about it
I'm going through something similar... and coming to terms with the fact that this might be permanent. I'm in my early 50s and always looked and felt young... health issues and the past 2.5 years have taken their toll. For stability and endurance, my PT suggested a cane and I refused. However, I started using one of my old trekking poles (which I had angrily packed away last year when I realized I wouldn't be hiking anytime soon)... it has really helped! I live in downtown Seattle and now I go walzing around on my 3 daily walks (since I can only last about 10-15 minutes each time) with a trekking pole. I don't own a car anymore, so walking is supposed to be my mode of transport. My hips don't hurt as much, I feel stable when I walk, and it's gotten me out of the house which has done wonders for my mental health. I bought a second collapsible one so I can throw it in my backpack for days when friends drive to come take me to coffee and I can be in "stealth" mode but not have to go without my safety device. I hope you're able to push past those thoughts and give yourself the mobility you deserve!
I've had a bad knee since the day I was born, and, well, 30 years later, I finally broke down enough to get myself a cane. I'm still coming to grips with the idea of using it more often, but it's a life-saver on my bad days by letting me transfer some of the load off of my left leg. It's... A slow process to accept that, yes, I need this, and no, people don't generally care because we're all stuck in our own mental bubbles. I've gotten more questions from kids than adults, and kids are inquisitive, not usually meaning anything bad when they ask, "But, aren't those only for old people?" Chances are, they've only ever _seen_ old people walking around with a cane before, so seeing someone relatively young with an oak cane in hand is something that prompts questions. I remember that, and mention that, "I was born with a bad knee, and the cane helps me walk without pain." The only adult who asked about it was actually rather friendly, and he was more interested in where I'd gotten my cane because he wanted a similar one. (For the record, mine is very plain, but it _is_ made of oak. He had a collapsible one, and had mentioned that he'd had an unpleasant fall when he'd failed to lock it properly.) I think there's a lot of truth to the saying "we are our own worst critics" when it comes to disabilities. We see people with canes, wheelchairs, crutches, and think nothing of it ourselves because "Well, it's fine, they probably need it." We then look at ourselves and think, "I can still walk on my own two feet. Sure, sometimes it hurts, but I'm not 'that' disabled that I 'need' a cane/chair/crutch." When, in reality, that's the perfect time _to_ use that mobility aid, because it delays it getting worse. I know it's not right, but the way I go through it mentally for myself is, "If I don't use my cane, I will end up in a wheelchair before I'm 40, and it'll be my own fault for being too stubborn to use a cane when I had a chance." It's not that I have anything against using a wheelchair, but I *really* don't want to have to do that unless it's my last option available. So, I've picked up using my cane on the bad days, and going without it when I feel good enough to walk on my own. If I'm going on a trip somewhere, I put it in the car "just in case" because some days I feel good until around lunchtime, then I hurt. And when the day comes that I find myself using that cane all the time, I might consider the next step of, "Maybe I should get myself a wheelchair, because while the cane has been helpful, there are some days I'd likely be more mobile, more independent, if I had wheels." From a friend of mine who went from a cane to crutches to a wheelchair, as he put it, "Once you have one mobility aid, it's easier to justify the next one. That first one is the hardest one." So, do yourself a favor, get yourself a cane. Let's be honest, they have a _lot_ of different types, and any sturdy stick of your choosing will help you out. For me, it's a curved-handle oak one. My father uses a walking stick. We make quite the sight in stores, I'm sure, and no one really comments on it.
I think discovering your channel is such a blessing. I am a 68 year old grandma. When I turned 60 I had gotten Gillian Barre Syndrome. With the exception of taking a few steps in my home as I stabilize myself holding onto things as I go, I’m mostly in a wheel chair. I noticed that sometimes people look past me to my husband to speak too. It was almost like they thought I must have lost my brain when I lost my ability to walk. It doesn’t happen all too often but still hurts when I think about it. I’ve never really adjusted to having to use a wheel chair but I’m hoping to change that. I sobbed the first time I had to use one. It’s a huge adjustment to anyone in this situation. Looking forward to your videos. Thank you ! I have a feeling you’ll be helping a lot of us out here.
Definitely relating to this. I've used a cane since age 25, and starting to accept that it was something *I* needed took me longer than I wanted it to. It didn't matter that I wasn't judging others for using mobility or other necessary aids, because I suddenly felt all these horrible ways about myself. I felt like my life was over, like my worth had bottomed out. In reality, my ability to be mobile and have a life where I can interact with the world is so much better with my cane. It was the right choice for me, and seven years on, I'm glad I have my cane. Best of luck to you and your new friend!
I needed this video today. I've been wheelchair bound for almost a week now. Today my pain is the worst it's been in a while. My mental health is not okay. Please keep posting. I need it❤️ I have also refused the help I've probably needed over the last 10 years because I didn't want to feel less. Despite the pain. My mind told me, that accepting the help meant I gave up on recovery.
I hate that I hate feeling this way Jo, I just love how your mind works and how you express emotions that are dichotomous. It's really helpful for me because you can verbally do these amazing gymnastics regarding what you're feeling how you're feeling why you're feeling things and it's really a pleasure to get inside your head because it's so wonderful the way you share that process. I'm so glad you got the wheelchair, you needed it you deserve it and I think you're going to grow to see how beneficial it will be in your life. Thank you for this video and I'll see you in the next one.
I’m the words of my father “you got to do what you got to do” and weather that’s using a wheelchair or using a prosthetic doesn’t stop you from doing you
I appreciate seeing someone talk about the uncomfortable side of using a new aid. So many times you see people talking about the good but not about the dark side. And purple is the best color!
Purple is the best colour 😁💜 my hearing aids are purple. I'd highly recommend Jessica Kellgren-fozard's channel and her videos about mobility aids and the journey through accepting them. She's a wonderful RU-vidr, disability advocate and educator.
I'm a 41-year-old right leg bka amputee at just about exactly your same level, and you said everything that I've been thinking in my head for 20 years, thank you for your insight
I am with you in Team Purple. It IS the best color and NOTHING will change our minds! 💜 I had to deal with unlearning as well. As someone who is both semi-ambulatory and fat, I get that lovely double-whammy of NEEDING to use aids but also feeling LAZY for doing so. It came to a head when grocery shopping, which has always been an exhausting necessity. I finally sucked it up and grabbed one of the electric carts one day, and the immediate relief I felt combined with the sudden freeing-up of energy to use on other things was almost overwhelming. More recently, when traveling with my mother and sister, I was able to borrow my mom’s cane when she was feeling good, and that too made a difference when walking. It took me a while to stop feeling bad or not-as-deserving about using these tools, but that’s all they are: tools. Should I feel bad for using glasses to see clearly, or for using a car to travel distances, or for using a toothbrush to clean my teeth? Tools are tools.
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