Have you used a wheelchair lately?

My guess is that, no, you probably haven’t. It’s really quite a fun and exhilarating experience so I thought I’d give you a factual account of what you’re missing. Any profanities are strictly necessary.

Having a sweaty bum and back for the entire time between April and November. For me this was especially awful this year as I was heavily pregnant. And being hot, pregnant and in a wheelchair brings a special kind of under-belly sweat that I bet you’re all jealous of. But being seated in a black chair constructed from man-made fabrics, nylon and sponge and not being to stand up and cool your butt down is just hideous.

People leaning on your wheelchair. There are only certain people to whom I have given special permission to lean on my chair if they feel they need to for any unforeseen circumstantial laziness. The rest of you, use your glutes. Seriously, you have plentiful bum, leg and core muscles which I’m quite sure have many uses, one of these being holding you in an appropriate standing position. Magical!. Use ’em or lose ’em. And while you’re at it, stop moaning about having to walk somewhere or go for a run to keep fit, you don’t know how good you have it.

I have eyes, ears and a brain. If I am unknowingly in your way, ask me politely to shift. It is never necessary or helpful to move a wheelchair-user who is a complete stranger, out of the way for your own convenience. This actually happened to me in a supermarket – an elderly man saw it as his job to move me slightly to the left so he could get to something on the shelf that he couldn’t reach. Probably denture glue. But I was actually quite stunned, as was my partner who then looked at this gentleman with utter amazement. Would he go up and lift someone’s leg to get them to step out of the way? I doubt it.

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The numb bum. Always a numb bum. (There’s a theme to this post isn’t there?!) You’d think after years of using a wheelchair I’d be used to it. However, each and every day I get an achey numb bum and have the urge to stand up and stretch my legs. But I’d have to quickly get back into my chair incase people thought I had been faking it all this time. Maybe it’s because I used to be able to walk albeit in an quirky fashion, so I know what I’m missing, but it never goes away. I can’t wait to get on the sofa at the end of the day to lay back and be in a position that isn’t a right-angle. Being sat down all the time also brings great joy when it’s raining outside (or inside). Your thighs face up to the sky and get drenched very quickly. A raincoat serves little purpose here..

No, we’re not all paralysed. Not everyone who cannot walk and uses a wheelchair is paralysed. Use your imagination for f*ck’s sake. Maybe my legs have been taken for use by aliens who move around their own universe using stolen human limbs and replacing them with useless, but very life-like, dummy legs. The aliens have immobilised me for their own benefit. Consider this a cry for help.

We weren’t all in a tragic accident causing us to lose the use of our legs. See above. Some people have experienced this kind of heartbreaking occurrence though, and I’m pretty sure some of the following applies to these people too. The question asked most often with the accompanying tilty-head of doom is “Oh, how did it happen? You poor thing! You cope so well though!” Oh crap. Do they want a biological breakdown of the faults in my Mitofusin 2 gene and how it has affected me my whole life, gradually taking my movement and independence, or will the simple answer “I have a muscle wasting disease” suffice?

Disease!? Hark! This girl is DISEASED! Step away immediately, we might catch it!

The jokes about women drivers and being in charge of an electric or even my manual wheelchair, never get old. In fact I’ve not heard enough of them. Please say more things like this so I can legitimately punch you in the face.

Last time I checked (which was never) wheelchair users did not feature on the list of banned or dangerous dogs. If you see one of ‘our type’ coming down the same side of the street as you and your little darlings, there is no need to yank your child out of the way, almost dislocating their shoulder in the process. I don’t bite children. They taste like snot and poo, and I live with three of them so really I’m ok with just rolling past you in a completely nonthreatening manner. But you’ve just made your kid scared of wheelchairs and people in them. Round of applause to you.

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Shopping and general wheelchair access woes. We’re in the 21st century with 3d printing and robots and cars that drive and park themselves. But we can’t work out how to make pretty much everywhere accessible to wheelchairs and have facilities for people who need them because of a disability. It won’t be cheap, but most things that are vital for disabled people aren’t cheap. But surely it can be done properly and not take decades in the process. Hopefully it’ll happen in my lifetime but I am doubtful. I mean, we must be quite a healthy, capable nation, or why would they not give more funding to local NHS care trusts and councils. Maybe disabled people are just moaning about nothing.

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The shitty wrists. You read correctly. And by shit I don’t mean my own or even humans in general. Dog shit specifically. People are idiots and lazy and perpetually leave their dog’s crap wherever it was delivered. Because who wants to pick up poo? Well not me and my wheels. And seeing as I don’t own your dog, or any dog for that matter, I do not want to find chunks of dog poo in the tread of my wheels and then the creases of my wrist/hand before realising what has happened. Some dog poos are highly stealthy and not obvious, hence why we sometimes wheel through them. No amount of Dettol spray and hand-washing gets rid of the horror. And here’s a picture because my teachers taught me to support my arguments with evidence:

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Any enquiries about trying out a wheelchair and experiencing all of this for yourself should be submitted via my facebook page or Twitter @shopgirlygm.

Check out another blog I love, and which inspires me to write about the crappy stuff more and try and illustrate the unillustrateable. Hurrah for Gin is hilarious.

 

 

 

 

 

 

 

 

The School Mum 

My daughter, Amélie is soon going to start school. Along with thousands of other kids across the country, we’ll be getting up extra early on Monday September 7th to get her school uniform on, pack small pots with snacks and sandwiches and make a head of 4-year-old hair look suitably coiffed. Amélie will be a little nervous no doubt, but will mostly be excited, more so because she gets to use her Frozen lunch box and rucksack. I on the other hand, will be more apprehensive. 

The daunting thing is that we are both starting school that day, and aside from my sometimes unfounded anxieties about my children, I am selfishly more nervous about my new role as a School Mum. I don’t think I know which category I fit in, I’m presuming there isn’t a group next to ‘yummy mummy’ or ‘forgetful parent’ that says ‘the disabled mum’. Are there any books I can read to prepare myself for how to behave? How many people do I need to converse with at the school gates?  What do I wear? How many times is it acceptable to use the question “did you have a good summer?” Is it frowned upon to only talk to people you already know? Surely complete strangers don’t need to introduce themselves just because their respective children spend all day together? I’m imagining it might be a bit like going to the hairdressers’. Neither party in the hair cutting experience actually wants to get into the other’s personal life in the 50 minutes you are sat in the white faux leather chair, with a floor-to-ceiling mirror reflecting your own awkwardness. The hairdresser doesn’t particularly want to know if you’ve any holidays booked this year, and she couldn’t give two hoots about your perspective on the weather. If she wants to know, she can look out of the window.

I’m wondering if every school mum strives to be on the PTA. I’m not sure if there’s an audition process, or if I’d have to bake a homemade coffee and walnut cake as bribery, or if I have to be related to the janitor or something. I’m assuming it’s still somewhat of a club for moany overgrown Teacher’s Pets like when I was in primary school. I love a good moan and I’m all for supporting people to make changes that need changing, especially when it comes to something my children have to be involved in, but I’m not sure if I want to be a part of yet another battle of popularity, ego boosting and parent politics.  It’s going to be complicated enough trying to find ways to explain to new people that they don’t need to swoop in and do my kid’s coat up for me. I don’t doubt there will be a Rescue Parent rotating around and with their nose in everyone’s business at all times. Those are the kind of parent politics I’ll be dealing with!

So what sort of school mum are you? Do you always try to make conversation with the person standing next to you or is it acceptable to have moments of relative silence, not needing to know what brand of cornflakes the other buys, or how their kid scored on the spelling test? Is it important to make sure your little darlings look their best for at least the beginning of the school day, out of the fear of what other parents might think? Nobody doesn’t judge. We all do it. I like my kids to look tidy for the most part and I like their hair and clothes to look like they’ve been washed recently. No one wants to sit next to the smelly kid. But almost equally, they are kids after all and does it really matter if their shoes have yesterday’s mud on, or they have a toothpaste smear on their sleeve.* 

I do also wonder what teachers’ impressions of certain parents are. I often get anxious about the fact that I don’t often speak up about something I want to say to those looking after and educating my children. In a similar way, I get anxious and paranoid if I ask those people something which I only need to ask because of my disability out of fear of being an awkward burden. For example, at the Parent/Teacher meeting a few weeks back, I seemed to get more stressed than necessary, about needing to ask Amélie’s future teacher what the wheelchair access is like throughout the school. I don’t plan on hanging out in the playground at lunchtime, or joining in with the infants’ Christmas Production, but I need to know what kind of lengthy detours I’ll have to take to get around in the buildings my child will be in for the next 7 years, and my youngest child for three years after that. I don’t want to single my children out as those kids whose mum can’t get into their classroom for parents’ evening. 

It’s given me a lot to think about. I wonder what Amélie’s new friends will be asking their parents about the lady in the wheelchair, and what their parents will say back. You might be thinking that this is all very presumptuous to think that I will be occupying people’s thoughts this much, and that I’ll blend in with the rest of the parents waiting to pick up their little darlings and their precious offspring won’t stop to stare (which I don’t mind, by the way) and maybe you’ll be right. But experience tells me otherwise.

It hasn’t ever happened. I’ve never blended in; as much as I’ve tried, I’ve always been ‘different’. Well since I started primary school myself around 25 years ago. Attitudes have changed since then but there is still a heck of a long way to go. Just having to ask about school wheelchair access singles me out instantly. Then I have to consider the gradient of the slope into the school entrance, too steep and I’ll have to bulldoze parents (maybe some kids too) on my way in, or I’ll need help just to access the school to pick my child up.

I just don’t want Amélie to feel different in her first few years in education because her friends have noticed something different about her family. The next few days and weeks will be very telling. 

Until then, I’ll be the one lingering at the outskirts of the queue like the awkwardly misshapen carrot in the field that isn’t quite sure of its future occupation. 

*seriously, how long until a child stops wiping their toothpasted face on their clean sleeve? I’ll let you know in a few years…

@shopgirlygm