Don't
I increasingly dislike people. I increasingly do not understand people - on many levels and for many reasons, but this feature is about a reoccurring experience as a wheelchair user.
A reoccurring experience that makes me want to do two things – tell the people who do it to fuck off and punch them in the face. Sadly, both are frowned upon, so I’m going to start responding in a different way.
Before I get into it, yes, I know it’s not everybody.
But, in my experience, enough people do it.
Do what?
Read on to find out.
Brainless
Anyone familiar with this website or any social media attached to it knows I use wheelchairs. I have a manual chair and a big, chunky electric chair.
Severe Hypermobile Ehlers-Danlos Syndrome (HEDS) and my ongoing pelvic issue mean I struggle to push myself in my manual because my joints increasingly sublux (partially dislocate) and dislocate. Self-propelling also triggers my pelvic pain, and when that kicks off, moving, sitting, talking and even breathing hurt.
I mean really hurt.
The kind of hurt I hope most of you never know.
So, I have to rely on my electric wheelchair. I hate it. The sound of its motor drives me insane.
I use it to try to not trigger my pelvic pain. Walking, even just around my house or the local grocery shop is always a gamble.
Because of my deteriorating body and shit transport options where I live, I rarely leave the small village I had to move to eight years ago because not enough wheelchair accessible bungalows are built.
In this small village is a pub and a hotel. I avoid the pu
b because it has steps – and people who have gossiped about me and my wheelchair.
How do I know this?
“See!” She bitched at the man standing next to her. “I
told you she doesn’t need that thing!”
A woman standing outside it saw me walking across the road to where I had to leave my old electric wheelchair due to an unsafe pavement when I went to buy food.
“See!” She bitched at the man standing next to her. “I told you she doesn’t need that thing!”
If I could go back in time, I’d respond to her in some way that makes her feel as stupid as she sounded instead of just ignoring her dumb, ableist fuckwittery.
No, I’m not paralysed. I’m fortunate enough to be able to move my legs and stand – in theory, if not in practice when the
pain
kicks in.
So, I go to the local hotel for a coffee if I can, just to get out of the house and stop myself going totally insane in my isolation. It has flat access, some nice outdoor seating areas and the staff are great.
Sadly, not all its patrons are always so great.
Take this dumb bitch who was standing at the bar when I went in recently…
Interrogation
Staff there know I’m only usually only going to order a latte.
Maybe a soda water too if I’m feeling dangerous.
They were shocked recently when I did ask for a tequila shot, but had to settle for something else because they don’t sell any there.
Me ordering alcohol = raised eyebrows from behind the bar, rare as it is.
On the day in question, my order varied slightly by me asking for decaf, and I explained to the server I was avoiding caffeine due to some seizures – of the focal and tonic-clonic kind.
Thank you, Epilepsy…
Next to me at the bar were a couple of locals who are there daily and who I’d rather not interact with for various reason I’m not going into now.
Standing with to them was a local woman I’ve seen around the village and recognised but haven’t spoken to before, and have no desire to speak to.
She sidled up to me.
And her fuckwittery began…
Telling me she’d seen me around and knew I used wheelchairs, she started asking me why?
Why do use wheelchairs if I can move my legs?
Is it because of seizures?
She’d heard my conversation with the server and made assumptions.
I made a mistake.
“It’s not because of seizures,” I replied flatly with a sigh, not even looking at her and hoping she would read my body language, see my disinterest and go back to the two men.
She didn’t.
She continued questioning me.
If I didn’t use a wheelchair because of seizures, why did I use one?
How far can I walk?
How often do I walk?
Why do I walk?
Do I walk around my house?
And countless other questions I can’t remember.
A few moments later, she appeared, fresh booze in hand, wandered to where I was and sat opposite me.
She did ask if I went to the pub up the road, to which I replied that I do not. She asked why?
“Because there are steps,” came out of my mouth, “and because I know I have been gossiped about in there.”
I went on to tell her about the woman standing outside bitching about me faking my need for a wheelchair, a thought crossing my mind – was that her?
She and the woman now interrogating me as I waited for my coffee were both blonde, and she did look somewhat shocked when I told her what had happened.
Was that shock some sort of disgust that such ignorant accusations had been levelled against me?
Was it because she was a regular there and was surprised I knew I had been discussed?
Had it, indeed, been she who had said it and surprise I’d heard it causing her to now drop her mouth open and actually shut the fuck up for a few seconds, her bloodshot eyes staring at me through a gin-fuelled haze?
I can’t say.
My answers were short and vague, I told her I’d spent nearly ten years pretty much stuck in bed then went outside, choosing to sit at the table furthest from the entrance and all the other seating.
A few moments later, she appeared, fresh booze in hand, wandered to where I was and sat opposite me.
“I’m not going to sit with you,” she quipped as she joined me. Then she continued questioning me while ignoring any question I asked her.
It was, metaphorically speaking, as fucking painful as my pelvis can be.
This is far from the first time a stranger has wanted to know why I use wheelchairs and I still remember the first time I was asked. I didn’t even have my own wheelchair then and was using one I’d borrowed from the Red Cross.
Back then, I was still hoping that needing one would be temporary and my body would heal the pelvic injury crippling me.
Pushing myself around the historic old town in which I lived, I came face-to-face with a young man in an narrow alley way.
Before that wheelchair, my primary mode of transport was a secondhand mountain bike with a detachable seat my son, a toddler at the time, sat in behind me.
Cycling was the only form of exercise my HEDS body could cope with and I’d become fit. Very fit.
So fit, internationally renowned EDS specialist, Professor Rodney Grahame, had been shocked at my condition when he examined me after I’d been bedbound for six months.
I stood, stripped to my underwear in his office as he stepped back from me, brows knitted together. “You’re fit. Very fit. Fit for a normal body, nevermind an EDS body,” were his words.
The young man in the alley looked equally puzzled as he stared down at me in that borrowed wheelchair, mouth agape.
“You’re the girl on the pink bike. You’re in a wheelchair,” he stated the obvious. “You’re always on your bike. Why aren’t you on your bike?”
“Because I’m in wheelchair,” I replied before pushing myself away.
Being visibly disabled, the wheels beneath my body signalling I’m disabled, and dealing with intrusive questions and ableism was still new to me then, despite my HEDS getting worse and causing increasing amounts of pain since childhood.
Since then, strangers have asked why I need wheelchairs many times. That young man didn’t annoy me. This blonde at the bar who came and sat with me did.
I don’t want to be interviewed
by a drunk stranger possessing the emotional intelligence of
Donald Trump.
In between asking me things, she pouted, holding her hands out wanting me to hand my tiny dog over to her, which was never going to fucking happen.
Going to the hotel for coffee is my one chink of light during my days in this torturous body.
Generally, I don’t want to talk to anyone there, am happy sitting alone.
Sure, I make brief, polite conversation with other patrons when the opportunity arises, but I certainly don’t want to be interviewed about some of the hardest and most traumatic parts of my life by a drunk stranger possessing the emotional intelligence of Donald Trump.
And that is the point of this piece.
Stop
Writing and publishing words about my medical situation, my experiences with this body when I want to is one thing.
Being fucking cross-examined by strangers is quite another.
Ending up needing wheelchairs was an agonising, frightening and distressing process. It still is all of those things.
The process included fighting many medics, meeting with the Medical Director of my local NHS Trust to discuss how his Trust was acting illegally, discussions with law firms, an unwanted abortion, seeing my son’s life change drastically and being sucked into a world of disability, hospital stays, the end of my career, my mobility, freedom to choose where I live, being minutes away from dying as my brain sent my body into shock because of pain and started shutting it down, and years of tears.
It involved and involves dealing with ableism on so many levels and in so many ways, especially in the UK where intrinsically ableist news media have increasingly attacked disabled people in the last few years (typifying why I decided to not go into news journalism after qualifying to do so at the UK’s first and most prestigious School of Journalism because I saw how manipulative and socially damaging news is).
Heaven fucking forbid you get up out of your wheelchair and stand
or (gasp!) walk a
few metres!
The vile news stories spouted by national news media have translated into increased hostility online and in physical life. Increased accusations of us being ‘scroungers’ and ‘fakers’.
Heaven fucking forbid you get up out of your wheelchair and stand or (gasp!) walk a few metres!
You end up being gossiped about by drunken, alcoholic fools and interviewed by nosy strangers who should know better, but somehow don’t and expect you to divulge the deepest, darkest, most personal and traumatic parts of your life.
It may have been twenty years since I first needed a wheelchair, but that doesn’t mean I am completely accustomed to doing so. That doesn’t mean I don’t miss the life and body I had before.
I doubt that many people would appreciate strangers suddenly asking them for details of their medical history – or about their most traumatic experiences.
Whatever led us to needing to use wheelchair, you can put cash on it involving trauma and tears. You can bet it wasn’t and isn’t easy, and it involved and involved not only medical and physical struggle, but also intense heartbreak.
Before you start asking anyone why they use a wheelchair, just stop.
Just stop and think.
Would you want to discuss the darkest, most difficult parts of your life with anyone you don’t know?
Especially when all you actually wanted is an hour out of the house, getting a quiet coffee, having a different view other than the four walls containing you every day, day in, day out, week after week, month after month, year after year as you feel your body becoming increasingly unwell, increasingly unstable and increasingly frightening to be in?
No.
Chances are you would not.
Before you begin, fucking stop.
Try, at the very least, to employ some level of awareness and empathy, bite your tongue, mind your own business, think about something else and…
...Just don't.
