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“She’ll run you over”

There are a lot of allegedly jokey comments that people make about or to me as a wheelchair user.  Usually well meaning and perhaps an attempt at being funny. They aren’t funny.  Most of them never were but one or two may have been if not for the fact that I hear them all the time. 

I’m talking about the “women drivers” comments.

The people who say “do you have a license for that thing?”

Those who randomly see me and go “no speeding!”

And many others.

I often roll my eyes at that sort of thing and let it go because it’s usually strangers and theres no point getting annoyed about that.  When one of the assisted travel guys at London Waterloo put the ramp down and after I drove down it went “who says women can’t drive?!” I asked him if there was meant to be a compliment buried in there somewhere. And he didn’t really answer.  But he was there to get me off the train the next time I went and just said hello.

The comment that really gets me though is made when parents on the street are trying to get their child out of my way. I heard it earlier today and yes the child was taking up space but it wasn’t a huge issue.

It’s “she’ll run you over if you don’t move.”

A lot of kids don’t know what a wheelchair is and don’t know what to make of them. I don’t like the nosy inappropriate questions I get from adults and older kids but if I have the time I was always answer young ones because it’s genuine curiousity and normalising disability (and in my case specifically wheelchairs) is important.
Even if you tell me to or give me permission to I’m not going to run your child over (and I have heard “I’ll let her…” and “I’ll tell her to…”before). Comments like that make my disability and my chair something to be wary of. I’m sick of being made out to be the big bad wolf to be scared of. 

I am not a threat to get your child to do what you want. Stop using me as one. I’m a person the same as everyone else – I just spend my life on wheels.

Random Bullet Points of Life

A blog for the small things worth recording but maybe not worth an entry of their own. And this edition has the bonus of being written in the time it takes for the oven to heat up for me (oh so late) dinner.

  • It took a visit from an NHS wheelchair tech (not my regular one), an adjustment by my Dad and a visit from my regular NHS wheelchair tech to get the manual working again. It was fixed after the first visit but the fill in tech didn’t reattach it in the correct place so it wasn’t useable. Dad would have left it but I needed to go somewhere I could only go in the manual and his adjustment got me moving again temporarily.
  • I’ve ordered an Action4 manual wheelchair to have as a spare. In white. I’m very excited about that colour choice but Mum was very bemused which was hilarious.
  • Related: holy fuck wheelchair parts are expensive. When I was sorting out the action4 order I said I didn’t want to get my seating adjustments/extras as it’s just a spare. They suggested I could get a set of brackets fitted and then use the backrest from my old powerchair on it. This was a great idea until I heard how much the brackets were.
  • After not really reading much for the last few weeks (or this year really) I read over half a book in a sitting this afternoon.
  • I have experienced so much ableism over the last few days it’s ridiculous. It’s almost like I had one experience and it bred another and another sort of like tribbles? I’ve been trying and failing to write about that.
  • I am apparently not doing NaNo this year but I really want to be.
  • There has been so much death and sad news this year. Some closer than others, some unexpected and some not. It’s getting a bit much.
  • My brother and I went to see Fantastic Beasts and Where to Find Them on Friday. It was very good and I highly recommend it.

You Know You’ve Got CP When…

…you don’t know whether to post an “argh terrible disaster it’s all going wrong crisis.” status update or a “oh wow this just happened I rock” status update – and the two things relate to different parts of the same incident.

So it was something like 11:30pm last night. I’m on the computer and beginning to think about bed but I’m waiting for something on here to finish. I decided to leave it on and go to the loo, start getting sorted.  I’m in the hall, almost to the bathroom when something happened to my manual chair and not only wasn’t I moving but it had dropped in one corner and I was half in and half out the chair.

My powerchair is also in the hall so I try a couple of times to get myself up but I can’t. I have to ring my parents. My Dad answers and it turns out I’ve woken him up. He comes down and lets himself in and I’m really surprised that I didn’t fall out in the ten minutes it took him to get up and get here. I’m sore from having my leg in a position it doesn’t like and that triggered a ton of clonus (which I rarely have any more). Whilst I was waiting for him I’ve had a better look at my chair and I think one of the castors has snapped all the way off as it’s in a really wrong position.*

Dad tries to help me up and can’t. I say I think I’m going to have to get on the floor but he tells me no because he won’t be able to get me off the floor and we’ll have to call an ambulance. He folds my walker and manages to get it round in front of me but even with that I can’t stand – it’s too low with the way it’s fallen and I’m slipping more and more forward (and out) with every attempt.  Can’t bring me my powerchair to try to get into as it’s behind me and my hall isn’t wide enough to get it past.

It’s gonna have to be the floor. Which we’re both thinking means a call to 999.

I did a semi controlled fall to the floor. Dad grabbed my arm to help me control it as much as possible which is probably the only reason I didn’t hit my head as I suspect I don’t have enough control of my trunk otherwise.

Dad moved my manual out of the way and I started moving towards my powerchair. If my last proper fall is anything to go on I am getting a visit from the paramedics but my fixing this myself needs one proper attempt first.

I can’t crawl but I can move myself by doing a sort of rocking from side to side slither on my tummy (it’s not commando crawling)

I’m moving. This is good.

I get myself up on my knees on my first attempt leaning on the powerchair. This is even better.

Then I have a few moments knelt there trying to figure out what’s the best way of doing this. Pressing down on my cushion was my first thought but didn’t feel right.

I’m levering myself up. I’m getting more and more up and convinced that I’m going to get so far and lose it and crash down. So far I’m not really injured and I know when I do crash down it’s going to hurt. But I need to attempt this.

Only it ended with me up and twisting round and into the powerchair.

Neither Dad or I are quite sure how that happened (my last fall I was on the floor for over two hours and it took 2 people to get me up. I was covered in bruises for days after from both the fall and my failed attempts to get up).  Mum told me this morning that Dad went home and told her “she just got herself up.” She was also shocked.

I’m sat there and I’m shaky and full of adrenaline and tears and panic because that moment when you go from fine and moving to stranded and about to fall is scary as shit.  This is something that actually I need to write more about at another time.  And I feel bad because I woke my Dad.

But at the same time there’s another part of me that’s sitting there thinking “holy shit I just did a floor transfer.” and kinda wanting to grin and shout from the rooftops that I did it.  (I suspect adrenaline had a role in that and I may not be as able if it wasn’t an emergency)

*It turned out to be really bent rather than snapped. This was taken after Dad straightened it a little. the very badly bent out of shape castor on my manual wheelchair

Miles on my tyres

I’ve officially had the Jive for three months now.  

And I’m pleased ro report that I didn’t come anywhere near falling out of my chair in month three so that’s an improvement on the previous two months.  I did freak people out on two occasions but I think that’s always going to be the case with this chair because of how the spider-trac suspension works – when i go up a steep ramp it shoves me really down onto my back castors and the front castors come slightly off the ground.

I did 93 miles in my chair this month and set a new record for the most miles done in a day/between charges – 9.2 miles.  I was away for a few days and won’t be commenting on the rumour that I deliberately did an extra loop around the shopping centre by where I was staying to get that extra mile.  It did surprise me how much distance I covered just getting ready for the day and going for breakfast in the hotel each morning.

I was sure that if there was going to be a month when I did over 100 miles in the chair it would be this one with the number of times I went to London.  But I’m now beginning to suspect that is a goal I won’t meet.

Matilda!

Earlier this week I went to London, had a wander round by myself (getting slightly lost) and then met up with friends (including a very excited almost 7 year old) and we went to a matinee of Matilda the Musical.

It was fab.  I did expect it to be funnier than it was – I had high expectations for that because Tim Minchin who is a musical comedian (and one of my favourites) wrote the lyrics. But when I thought about it afterwards he’s known for clever humour. And this was certainly fully of clever lyrics with humour woven in.  I would much rather have that than it be full of cheap humour.

The staging and the effects were brilliant and the songs catchy and fab. I’ve downloaded the soundtrack and been listening to it a lot since I got home.  It’s a couple of years since I’ve seen a musical and wanted the soundtrack (although to be fair the last musical I saw was Mamma Mia and I already had the film soundtrack or I’d have got that) The cast, especially the kids were spot on.  It just worked really well which given that three of the last nine or so musicals and the last play I’ve seen have been disappointing was brilliant.

I would highly recommend going to see the show and it’s definitely going on my list of shows to see again if it tours.