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12 Everyday Frustrations of Being a Wheelchair User

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Using a wheelchair can be frustrating. However, many frustrations that come with being a wheelchair user have nothing to do with our disabilities themselves — more often it’s our environment, society and unaware people. Although there are around 1.2 million wheelchair users in the U.K. alone, we are still considered a rarity it seems, 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, while also get fellow wheelers nodding along in agreement.

1. 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. 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 or 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.

2. Nor am I your pet.

I don’t see many people just randomly pat or stroke somebody they’ve just met — 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 patronizing. 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 personal space that most regular people aren’t subjected to.

3. 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 master’s 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 or 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, inquiring at an information desk or booking theatre tickets. Just to confirm, normal volume and speed are also acceptable. Shouting in slow motion only makes you appear to be the odd one.

4. You are not the first person to have made that bad wheelchair joke.

“Do you need a test to drive that thing?” “Is there a speed limit on that?” If I had a pound for every time I’ve heard a terrible wheelchair-related joke, 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 the urge to say “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.

5. 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.” But my wheelchair is my life. I would be stuck without it, literally. I couldn’t get out of bed. It is my freedom and my companion. Don’t diss it.

6. When I say I can’t get in, I actually cannot get in.

I would love to get into your house, venue, restaurant or pub. But when I say I cannot, 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, you can’t.

7. Don’t complain about walking.

“It’s all right for you, you don’t have to walk.” That’s all right 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 are shingles, or cobbles, or steps, or narrow doors, or oncoming pedestrians. Also, I drive with one hand, that gets achy just like your legs.

8. 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 maneuvers back then, and there are still some now. Driving comes fairly automatically to me now, like walking probably does to 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 rude to just move 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.

9. Don’t make assumptions.

Just like every person is different, every person with a disability is different, and every person using a wheelchair is different. Don’t assume what people can or can’t do. Don’t overbear or overprotect. Whenever I’m hanging out alone, you can guarantee 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.

10. 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 cinemafestivals and afternoon tea. “It’s great to see you out and about” is one of the most frustrating and patronizing comments I hear. How am I supposed to answer that? “Yes, 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 organization 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, traveled the breadth of planet earth by canoe, or written a novel (yet). I am not your inspiration.

11. I don’t know every other person with a disability.

There is no club people with disabilities automatically become a part of (although there are some wonderful Facebook groups). I probably don’t know your friend who has muscular dystrophy or your neighbor who broke his leg and used a wheelchair for three months. We are not part of a secret cult.

12. Remember I’m down here.

Being at the same height as most people’s bums has its disadvantages — though 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 shoulders people, it’s not cool when you’re down here!), and get drinks spilled on me. 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 footplates collide with your shins!

We are all just people!

Originally published: March 16, 2020
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