"You're in a wheelchair, but you can walk?"
Disclaimer: I am not in any way trying to invalidate anyone else's experiences with these things. If you've had a different experience, or know someone that has, then please know I am not trying to speak over that or say that my experience is the same as everyone else's.
Hey there!
Today, I wanted to talk a bit about wheelchairs. Firstly, I would like to thank God/the universe that the title of this post is not something that has ever been said to me. It is however something that I am sure many others have experienced before, and a phrase that I live in constant fear of hearing while out in public. Due to chronic illness (ME/CFS) causing me fatigue and pain, I've been a part-time wheelchair user since I was 14. In this time I've learned a lot about the complexities of ableism and accessibility, and how many assumptions people make about why you're using a wheelchair.
Before I get into this any more, I just want to make one thing crystal clear: wheelchairs are not just for a certain category of disability. There isn't a requirement that you can't use a wheelchair unless you cannot physically stand up on your own. There are many different reasons people use wheelchairs, so if you are in public and you see someone get out of a wheelchair and walk - mind your own business.
I do not need to use a wheelchair while in the house. I can go out without the wheelchair, provided I will only be walking/on my feet for very short distances (5-20 minutes at a time, depending on the day), or if I am prepared to push myself to feel like a normal young person and then take a day or two in bed afterwards to recover. But otherwise, I use the wheelchair as a tool to help me venture into the outside world with a little more ease. Just to clarify, I never go out alone in my wheelchair - I always have someone push me while in it, unless I'm in a tight space and trying to maneuver my way around. Since it's a manual wheelchair, the energy and strength it would require to propel myself would be even more than walking, so that would be totally pointless.
When I'm out in public, I get tired out by everything. I mean EVERYTHING. And when I get tired mentally, I get tired physically, and vice versa. My reasons for using a wheelchair are this:
1. Having the wheelchair means that if I suddenly feel very ill while out and need to get home ASAP, whoever I'm with (9/10 times it's my mother) can push me back to the car/back home. This means I always have a safety net, and won't end up immobile on the ground.
2. It allows me to be out of the house and spend my energy on things other than walking, such as shopping and making decisions about what to buy.
3. The more I pace myself and manage my energy levels, the longer I can stay out of the house without suffering too badly at the time/later.
When I'm using the wheelchair I usually alternate between walking and sitting in the chair. Every 45 minutes or so I'll walk for 5 minutes, for example. While nobody's ever actually said anything to me about it, sometimes I swear I can feel the stares and hear the judgemental thoughts emanating out of the minds of people around me. Maybe I'm totally making this up, but I've seen the posts on social media 'calling out' people for 'faking' disability, because they saw someone walk from their car despite being parked in a disabled space, or because they saw someone stand up from their wheelchair to reach something on a top shelf of a shop. It's my constant fear that I will become one of those posts, and believe me when I say it's really not a nice feeling.
I've never understood how anyone could think someone was just faking being disabled and going about in a wheelchair for fun or attention. Being in a wheelchair is not fun for me. It makes things easier, but it is not easy. You constantly have to say 'excuse me' because nobody notices you're there, and the response to that is usually one of three things:
1. A slightly overenthusiastic apology, overflowing with pity.
2. A look of complete shock (?? have you never seen a person in a wheelchair before??).
3. A grunt that seems to put the blame on me for taking up too much space.
Trust me, I'm aware that I'm below your eye level. I'm aware that a wheelchair is not something a lot of people are used to. I'm aware I'm taking up more room than you are. I don't blame people for any of these reactions, because although I like to think I would have grown up to be aware of others regardless, if I hadn't had my own experiences then what's to say I wouldn't have had those exact same reactions? I don't blame individual people for their reactions, it's just kinda sad when it's more surprising to have someone treat you completely normally. My favourite #casual ableism thing is when people who are handing out leaflets or collecting for charity only directs their attention towards my mother and completely ignores me. I might be misremembering, but last time it happened I'm pretty sure it was someone collecting money for a charity to help disabled people? I kinda hope it was, just for the irony.
I've been using a wheelchair for 5 years and yet I still often feel like I don't deserve the privileges that come with it like occasional priority access, or I feel like I'm lying to people and tricking them into thinking my legs are paralysed or something. I guess the truth of the matter is that if someone else makes that assumption, that's their problem. Being in a wheelchair is not the same as wearing a placard around your neck saying 'MY LEGS DO NOT WORK EVER' - so why do so many people seem to think it is? I've had people who were helping me with wheelchair/disability related stuff look genuinely disappointed in me when they've seen me walk, and I can only presume they felt cheated or lied to somehow. I distinctly remember one time when I had disability priority access to a plane, I was in the wheelchair and they asked if I was able to walk and when I said yes I swear they looked like they'd been betrayed somehow, like they'd been wasting their time helping me. Perhaps this is all in my mind, and I'm wildly oversensitive. Then again, perhaps not.
I guess my point here is that there is a huge spectrum between being able bodied and having legs that, for lack of a more sensitive phrase, don't work. Being able to walk for 10 minutes doesn't equal being able to do everything the same way as an able bodied person. Now I am obviously not saying that everyone who uses a wheelchair can walk. I'm just saying that whether they can or can't is their business and not yours. Support disabled people without making assumptions about their mobility levels.
Have you had any experiences related to this topic that you want to share, or any thoughts on it/this post? Comment below and let's chat!
Hugs to you all,
Isabel
Hey there!
Today, I wanted to talk a bit about wheelchairs. Firstly, I would like to thank God/the universe that the title of this post is not something that has ever been said to me. It is however something that I am sure many others have experienced before, and a phrase that I live in constant fear of hearing while out in public. Due to chronic illness (ME/CFS) causing me fatigue and pain, I've been a part-time wheelchair user since I was 14. In this time I've learned a lot about the complexities of ableism and accessibility, and how many assumptions people make about why you're using a wheelchair.
Before I get into this any more, I just want to make one thing crystal clear: wheelchairs are not just for a certain category of disability. There isn't a requirement that you can't use a wheelchair unless you cannot physically stand up on your own. There are many different reasons people use wheelchairs, so if you are in public and you see someone get out of a wheelchair and walk - mind your own business.
I do not need to use a wheelchair while in the house. I can go out without the wheelchair, provided I will only be walking/on my feet for very short distances (5-20 minutes at a time, depending on the day), or if I am prepared to push myself to feel like a normal young person and then take a day or two in bed afterwards to recover. But otherwise, I use the wheelchair as a tool to help me venture into the outside world with a little more ease. Just to clarify, I never go out alone in my wheelchair - I always have someone push me while in it, unless I'm in a tight space and trying to maneuver my way around. Since it's a manual wheelchair, the energy and strength it would require to propel myself would be even more than walking, so that would be totally pointless.
When I'm out in public, I get tired out by everything. I mean EVERYTHING. And when I get tired mentally, I get tired physically, and vice versa. My reasons for using a wheelchair are this:
1. Having the wheelchair means that if I suddenly feel very ill while out and need to get home ASAP, whoever I'm with (9/10 times it's my mother) can push me back to the car/back home. This means I always have a safety net, and won't end up immobile on the ground.
2. It allows me to be out of the house and spend my energy on things other than walking, such as shopping and making decisions about what to buy.
3. The more I pace myself and manage my energy levels, the longer I can stay out of the house without suffering too badly at the time/later.
When I'm using the wheelchair I usually alternate between walking and sitting in the chair. Every 45 minutes or so I'll walk for 5 minutes, for example. While nobody's ever actually said anything to me about it, sometimes I swear I can feel the stares and hear the judgemental thoughts emanating out of the minds of people around me. Maybe I'm totally making this up, but I've seen the posts on social media 'calling out' people for 'faking' disability, because they saw someone walk from their car despite being parked in a disabled space, or because they saw someone stand up from their wheelchair to reach something on a top shelf of a shop. It's my constant fear that I will become one of those posts, and believe me when I say it's really not a nice feeling.
I've never understood how anyone could think someone was just faking being disabled and going about in a wheelchair for fun or attention. Being in a wheelchair is not fun for me. It makes things easier, but it is not easy. You constantly have to say 'excuse me' because nobody notices you're there, and the response to that is usually one of three things:
1. A slightly overenthusiastic apology, overflowing with pity.
2. A look of complete shock (?? have you never seen a person in a wheelchair before??).
3. A grunt that seems to put the blame on me for taking up too much space.
Trust me, I'm aware that I'm below your eye level. I'm aware that a wheelchair is not something a lot of people are used to. I'm aware I'm taking up more room than you are. I don't blame people for any of these reactions, because although I like to think I would have grown up to be aware of others regardless, if I hadn't had my own experiences then what's to say I wouldn't have had those exact same reactions? I don't blame individual people for their reactions, it's just kinda sad when it's more surprising to have someone treat you completely normally. My favourite #casual ableism thing is when people who are handing out leaflets or collecting for charity only directs their attention towards my mother and completely ignores me. I might be misremembering, but last time it happened I'm pretty sure it was someone collecting money for a charity to help disabled people? I kinda hope it was, just for the irony.
I've been using a wheelchair for 5 years and yet I still often feel like I don't deserve the privileges that come with it like occasional priority access, or I feel like I'm lying to people and tricking them into thinking my legs are paralysed or something. I guess the truth of the matter is that if someone else makes that assumption, that's their problem. Being in a wheelchair is not the same as wearing a placard around your neck saying 'MY LEGS DO NOT WORK EVER' - so why do so many people seem to think it is? I've had people who were helping me with wheelchair/disability related stuff look genuinely disappointed in me when they've seen me walk, and I can only presume they felt cheated or lied to somehow. I distinctly remember one time when I had disability priority access to a plane, I was in the wheelchair and they asked if I was able to walk and when I said yes I swear they looked like they'd been betrayed somehow, like they'd been wasting their time helping me. Perhaps this is all in my mind, and I'm wildly oversensitive. Then again, perhaps not.
I guess my point here is that there is a huge spectrum between being able bodied and having legs that, for lack of a more sensitive phrase, don't work. Being able to walk for 10 minutes doesn't equal being able to do everything the same way as an able bodied person. Now I am obviously not saying that everyone who uses a wheelchair can walk. I'm just saying that whether they can or can't is their business and not yours. Support disabled people without making assumptions about their mobility levels.
Have you had any experiences related to this topic that you want to share, or any thoughts on it/this post? Comment below and let's chat!
Hugs to you all,
Isabel
"You don't look ill." Answer, "You do not look like a doctor.."
ReplyDeleteVery interesting. Broke some of my assumptions too :) Good share 👍
ReplyDelete