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.
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.
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.