Musings, Restaurants and Cafes, Wheelchair life

12 Frustrations Of Being A Wheelchair User

Gemma - Wheelescapades

You may remember my 11 Perks Of Being A Wheelchair User? Well there is a flip side to most things and bound to be some frustrations too. Surprisingly these are not often to do with the wheels themselves, more often its environment, society and unaware beings.

Although there are today around 1.2 million wheelchair users in the UK alone we are still considered a rarity it seems, something misunderstood by many and considered different.

So here’s my little list of frustrations and misconceptions, which will hopefully raise some awareness to those unaware beings about how you could and should behave around wheelchair users, but also get fellow wheelers nodding along in agreement.

This is an image to pin. On the left and facing sideways is me in my wheelchair. There is a cat on the floor behind me. The title text, 12 frustrations of being a wheelchair user is placed over. Pin this

I am not a piece of furniture

For many people their wheelchair is an extension of their body, a part of them. It’s not just a handy accessory, although it is that too. It’s a necessity and also part of their personal space.

That’s not to say it should define a person, I mean more like it should blend in. In which case, leaning on a wheelchair, using it to put your feet up, carry your bags, hold you up while walking along is not ok without prior permission.

I don’t see people hanging bags on others, using other humans to prop themselves up. So why do people just assume it’s ok to lean all their weight on my wheelchair and then complain or grunt when I suddenly move?!

My wheelchair is not for your comfort. I am not a piece of furniture. My wheelchair is not a piece of furniture. And anyway, it’s mine.

Nor am I your pet

I don’t see many people just randomly pat or stroke somebody they’ve just met. Well that’s unless they are a wheelchair user. You’d be surprised how many times I’ve been stroked on the arm or knee on my first encounter with someone. Not only is it rather creepy, but it’s extremely patronising. I am a 33 year old lady. Ok so maybe lady is a little questionable, but I am a grown up.

Once, I was interviewing potential PAs and one very lovely lady turned up for a chat. She seemed ok on the first hello, until she started stroking me and tilting her head. As you will have guessed she didn’t get the job.

I don’t know what compels people to pat and stroke, I am not a well behaved dog. It’s also another invasion of person space which most regular people aren’t subjected to.

I can understand English and have a sensible conversation

Surprisingly I can speak for myself, answer questions and have an intelligent conversation (sometimes). I have a Masters Degree, so reading a menu and ordering food isn’t beyond my abilities.

It’s funny how it’s never my eyes a server looks into when they ask the table if everything is ok. Many times my friend, parent, PA is asked if I’ve enjoyed my meal. I know people assist me with a lot of things, but they don’t actually taste for me too!

I can also speak when making appointments, attending appointments, enquiring at an information desk or booking theatre tickets.

So basically don’t talk to my friend. Unless that’s who you aim to speak to, then obviously it’s fine!

Just to confirm, normal volume and speed is also acceptable. Shouting in slow motion only makes you appear the odd one.

You are not the first to have ever said that

‘Do you need a test to drive that thing?’

‘Is there a speed limit on that?’

If I had a pound for everytime I’ve heard a terrible wheelchair related joke, well I’d be loaded. I understand jokes break the ice, jokes are useful in an awkward situation when you don’t know what else to say. But wheelchair jokes are an irritant and a bore.

Never say ‘Don’t drink and drive’ unless they are actually going to drive a car.

Resist from saying ‘don’t run over my toes’. We don’t try to, unless you say that, then maybe it is on purpose.

What would you say if I wasn’t sitting in a wheelchair? Try saying that to me instead.

Also my wheelchair is not a thing

It’s weird how often my wheelchair gets called a thing. I don’t know if others out there have noticed this, or it’s just me being hypersensitive. (Tell me either way). Maybe it’s a way of describing something people are uncomfortable with, or think I am uncomfortable with. An annoyance, a cumbersome thing.

Well my wheelchair is my life. I would be stuck without it. Literally. In bed. It is my freedom and my companion. Don’t diss it.

When I say I can’t get in, I actually can not get in

I would love to get in your house, venue, restaurant or pub. But when I say that I can not, please believe me (and build/buy a ramp). I’ve lived with me for almost 34 years now, I know me quite well, and I know what’s possible.

It makes me laugh how many different places I go or phone and they’re either like, ‘oh there’s only two steps, you can get out of your wheelchair’, or ‘can you just get out and transfer?’ Or worst of all, ‘no problem our staff can lift you and your chair up those steps’. No. No you can’t.

Don’t moan about walking

‘It’s alright for you, you haven’t got to walk’. That’s alright for me is it? Have you tried not walking. Ever. Not walking isn’t a convenience. Not walking can be pretty frustrating. Especially when there’s shingle, or cobbles, or steps, or narrow doors, or oncoming pedestrians, or people that keep telling me ‘It’s alright for you, you haven’t got to walk’.

Also I drive with one hand, that gets achy just like your legs. Probably more so.

Don’t think you can drive my chair. You can’t

I’ve been driving an electric wheelchair since the age of 2, yes seriously. There were some risky manoeuvres back then, and there are still some now. Driving comes fairly automatic to me now, like walking does you. That can make people think it’s simple, it’s not. When I tell you it’s a sensitive machine I am in no way exaggerating. Leave the driving to the experts.

Also, it’s kind of rude just moving people around without their consent. One of the scariest and most out of control feelings is being pushed in a manual wheelchair. You could be going anywhere.

Don’t assume

Just like every person is different, every person with a disability is different, and every person using a wheelchair is different. To each other. Don’t assume what people can or can’t do. Don’t overbear, overprotect or faff.

Whenever I’m hanging out alone you can guarantee that at least one stranger will come over and ask if I’m ok or need any help. I could be loitering outside the loos scrolling away on my phone waiting for a friend to return, waiting for a coffee to be purchased. Although this does prove there are some kind beings out there. It also displays the assumption that a person with wheels is more likely to not be ok than a person walking.

Don’t praise me for leaving the house

Just like everyone else I have errands to run, friends to see, things to do. I enjoy the cinema, festivals, afternoon tea. ‘It’s great to see you out and about’ are some of the most frustrating and patronising words I hear. How am I supposed to answer that? ‘Ye, it’s great to be allowed out into the community!’.

So maybe sometimes it is slightly more of a challenge for me to leave the house, mostly due to organisation and poor access. But there’s only so long you can sit home watching Netflix!

I do not need congratulating for living an average life. I have not climbed a mountain (I went up Snowdon on a train), created a genius invention, travelled the breadth of planet earth by canoe, or written a novel (yet). I am not your inspiration.

I don’t know every other person with a disability

There is no club (ok so maybe there are groups, and that’s a great thing for support and ideas. There’s now Facebook too) that us people with disabilities automatically become a part of. I probably don’t know your friend that has Muscular Dystrophy or your neighbour that broke his leg and used a wheelchair for three months. We are not part of a secret cult.

Remember I’m down here

Being at the same height as most people’s bums has its disadvantages. Ok so some bums are better than others.

I am at the ideal height to get elbowed in the face, whacked continuously by handbags and rucksacks (please wear them on both shoulder people, it’s not cool when you’re down here!), and get drinks thrown over.

When you’re the height of a toddler it’s as if you have an invisibility cloak. I am not at someone’s level of vision, therefore I do not exist. Please be aware when running across the field at a festival or park, some things might not be in direct sight. It hurts when you stumble over me, but it’s not as painful for me as it is for you when my foot plates collide with your shins. That is bad.

So long story short. We are all just people.

This is an image to be pinned. I am sitting in my wheelchair trying on a large hat, necklace and bags in a store. It is a fun photo. The title text, 12 frustrations of being a wheelchair user is placed over. Pin this

Published by Gemma - Wheelescapades

Whenever friends and I are out we always end up discussing, critiquing, analysing where we are and what we are doing. From talking about the food we are eating, the soap in the toilets, the awful bus journey to our destination, anything and everything we encounter. Because of my disability (SMA type2) many of the situations we get into, issues we discuss and laughs we have can be due to wheelchair access. Often me getting stuck in mud or shingle, or me making my way through the most cram packed shop you can imagine, wondering how I am ever going to find the way out again! I aim to write a blog that describes these dramas, tells stories of our laughs, adventures and frustrations, while giving detailed information on accessibility and wheelchair access. Also I like tea. ALOT. The quality of the tea often determines my return just as much as the accessibility.

79 thoughts on “12 Frustrations Of Being A Wheelchair User”

  1. Hey there Gemma. I was browsing some and stumbled upon this one. I noticed in one of your replies that you are currently using the Jay2 Cushion and you are still having comfort difficulties. I actually work for Ease Seating Systems and we make high quality wheelchair and power chair cushions. I would recommend checking them out if you are looking for a different alternative to comfort. We do offer a 30 day trial just in case you still prefer your Jay2. Hopefully this is helpful for you and others who read your blog!

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    3. Although I don’t use a wheelchair, I have had comments made to me recently because I use a walking stick and have mobility issues. Someone recently decided to bring up my mobility issues and make some troubling comments. Although I wasn’t even talking about my disability to them, they decided to take it on themselves to bring up a topic I wasn’t even talking about. This is someone who is an acquaintance who I hardly know! Also able bodied. They decided to suggest I needed a wheelchair, this was said in a joking manner. They didn’t stop there, then they made a comment that I should get a mobility scooter (all said with a laugh). They continued by making a comment that I should get: “general liability insurance”. I felt very self conscious of my physical disability. I also have a hidden disability, which I feel that they have also homed in on. I don’t feel okay around this person and I have tried to bring this up to someone. I feel like I am being victimised.

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      1. I’m sorry you’ve had to deal with this behaviour and attitude from someone. Seeing that somebody has a disability makes some people think they have a right to ask personal questions or to make jokes, if you don’t feel comfortable don’t except that and move the subject on to something else.
        Having the need for a wheelchair isn’t something that should be made fun of.
        Maybe send this person over to read this post next time things become awkward!
        Thanks for stopping by.

        Like

  4. Gemma, I can imagine you do a LOT of eyerolling! There are some good nuggets here about how to (or how NOT to) treat other people, disability or no. We are so prone to making assumptions, we could all learn to do that less. I love how you keep a good sense of humor about it even though you probably won’t to tell people off who do these things!

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    1. I think the majority of what people say is through feeling awkward and is a lack of understanding, mostly well meaning. The more difference and disability become part of our everyday within work, education and community, the smaller gap there will be.

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  9. This was a great post. I just found your blog from Pinterest. I’m a part-time wheelchair user and even though I don’t use my chair 24/7, I can understand the frustration of much of what you have said here. Back when I was a teenager, I used a wheelchair quite a bit from 13 to 15 years old. Things got better for quite a while, but now, now in my early 40’s my mobility has declined in the past few years. I finally got a wheelchair again in 2019 and I’m re-learning the societal challenges of using a wheelchair. I hate the assumptions that people make when they see me using my wheelchair. They assume my wife needs to speak for me, they assume I need to be spoken to like a child, they assume I can’t buy something on my own, they touch my chair (which I hate) and they give me looks of pity, which I don’t need or want. And the other thing people don’t get is that my chair gives me FREEDOM. I’m not sorry about it – I actually missed out on a lot of life, when I didn’t have my chair, so for me, I have all good feelings about the chair. It drives me nuts when people say “oh, I’m sorry” when they find out I need to use a wheelchair now.

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    1. Yes! It makes me rage when people touch my chair or use it for their comfort, leaning on it etc. You wouldn’t put your feet up on a person.
      My wheelchair is definitely my freedom. I’d be completely stuck without it.
      The extra loud and slow speaking 🙄
      I’m glad we have been connected over Pinterest. Thanks for stopping by and sharing your thoughts and experience.

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  15. Yes after all your /we are just people. It really is frustrating…when I was on crutches I can not count the amount of times people tried to walk between my crutch and me? I don’t understand why people are like that. I really don’t.

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  21. YES!! Thanks so much for sharing! Been there, done that, too – with all of these! Ya read my mind. My BIGGEST gripe – “What’s wrong with you?” Seriously? Why does there have to be something WRONG with me because I use wheels instead of legs to get around?! Makes me CRAZY!

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    1. Ohh yes I’m with you there. ‘Why do you have wheels’ would be much more polite! I’m all for people being more aware, but there’s nothing wrong with me! Well not the walking anyway 😂

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  22. This is a fantastic post Gemma! I have heard my mum mention most of the same frustrations. Although patting you on the head!? (wtf!?)

    Strangely some of these are the same when you are an obvious foreigner. I often found people would talk about me (as if I was not there in front of them) or not look at me when I was ordering in a restaurant. I think they were just nervous that I didn’t speak their language, but I always found that kind of behavior rude.

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    1. Oh absolutely. I think people just struggle to understand difference of all kind. Which is strange really when we are such a diverse world. It’s not like people don’t see or communicate with only their own kind. I hope anyway.

      The patting baffles me. I mean what are their intentions?!

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  23. I am pretty sure I have asked “Is everything okay” and followed up quickly with if not please feel free to call me.” Having said that I have asked all manner of beings that question. Legless ones … drunk. Small children, shouty men, tearful women both in and out of a wheelchair. People in bandages or on crutches. I am not being patronising but concerned. Most wheelchair users have things sussed especially if they are menovering like a boss. But some of us just want others to be comfortable, not scared to ask for help. Oh, I have been patted I felt like an aged Labrador. I did not know how to Argos … cest-la-vie or how ever you say it in French France. P.S. I won’t be Argossing again.

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  25. Eurgh, I can’t believe people have actually said “it’s alright for you, you don’t have to walk”. People can be twats sometimes, can’t they? Can also imagine “do you have a license etc” is really irritating too. People just don’t think.

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  27. Hi Gemma! This is so illuminating. I mean I feel much more comfortable now in meeting a person in a wheelchair that before reading this. I will read your post to my daughters so they will grow up being more empathetic with “wheelchair driver” 😉. Thanks for your lesson. I believe it was very needed!

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  28. I relate to some of these as well – the “are you ok”, “does she want” and “Do you know (insert name of random person that I’ve never come across)”!It’s great that you put this out there because people need to be reminded.

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  29. This is a terrific post – it is shocking to me that people would make comments about speed limits and running over toes…the insensitivity is stunning…thanks for sharing this and I am sharing it as well…so important

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    1. I get the running over toes one almost weekly. Mostly from the older generation I have to say, and probably in kindness, people feel awkward around difference. Which is a shame.
      Thank you for sharing.

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  30. I literally would never have thought of some of these things–though I like to pride myself on my ability to observe and empathize. I can absolutely imagine myself saying or doing something thoughtlessly, thinking I’m helping but really not. Your point that we’re all just people after all is well made.

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      1. I think you’re right. And I also think, it’s so good to just check in. Like, hey–“is this thing I’m doing or about to do okay? Or would you rather I didn’t?” I think we get all weird about that–but if someone is offering me help and I really don’t need it I don’t want someone getting all bent out of shape because I didn’t accept. My point is it’s so simple to ask without expectation and let whatever answer be okay.

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  32. Excellent post. Excellent perspective for the rest of the world, even the well-meaning who still stumble. We have gotten feet of snow recently, and I have yet to find one single corner with its ramp cleared. I’ve been ranting here that anyone using a wheelchair would never to be able to leave their home. I cannot imagine that frustration, and you seem to have captured it so well. Thank you for this post.

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      1. I worry so about that for my friends and neighbors who use a chair–winter has been especially cruel this year here, and because of so much snow, people have given up taking care of it. Grrrrrrr.

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  33. Ohhhh Gemma, some of these made me chuckle. Not because they are funny, but because I just cant believe people do some of them! The patting on the head? really? Also the waiter asking your friend if you enjoyed your food! Thats madness. I think I am an over helper. I would try to help someone, (anyone, including old people, children, a mum with bags, I just cant help myself) so I will be mindful of that. Great post Gemma, i love what I learn from you x

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    1. Luckily there are also people out there like you that see how ridiculous this all is! Yes I have been patted. Had my hair ruffled too, and yes I was an adult!
      It’s not a bad thing being an over helper, sometimes people do need help. It’s just like you say, all people.
      Glad to have made you chuckle. It’s my aim to be lighthearted!

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      2. Too many brandys for him that day then. Sounds a little creepy! I just don’t understand the patting. Why do people do it?! What do they think we think…

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      3. I don’t know. I removed his hand, but didn’t tell him exactly what I thought because it was bad enough that kids could see the drunk Father Christmas. I didn’t want him to see him getting into a fight with some crazy English woman (I was in Germany at the time). Definitely not cool though, and yes, a bit creepy too.

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  35. So much to think about.. when I have had to move an electric wheelchair to weigh it.. to then weigh my patient… they are actually very complicated… manoevering on to my steel girders a relative always has to help me. As for moving you without asking you that sounds so rude… I’m wondering now if there are things I say completely without thinking that cause offence… I think people often don’t put their brains in gear before opening their mouths. Good post and it has got me thinking.

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    1. Thanks. I agree, often it is people acting or speaking before thinking. It’s also a shame peoples automatic thoughts are different around people with disabilities. Although mostly it’s well meaning.

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  36. The only issue I have is the “Don’t assume” because I have helped many folks in heavy chairs that were struggling but were too proud to ask for help. Be thankful every time someone checks in on you to see if you need anything,who knows,it may be that one time you really do need it.

    Otherwise,this was spot on and I shared it in a page on FB.

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