so you had a bad day – A Writer In A Wheelchair

A Properly Poorly Powerchair

I’ve got a poorly powerchair. I’ve known for a fe weeks that it didn’t feel right but I couldn’t put together what was wrong with it.

Then mum and I went to Oxford to see The Mousetrap and on our way to the station afterwards (I had gone in early for drinks with a friend) she said the back of my chair struck her as wrong. When we got back to the station she had a properly look as we had time before the train and said she wasn’t sure. But I mentioned that I’d thought it felt off and had had a feeling it was something on the front right.

I’d been not saying anything to anyone because I wasn’t sure if I was right and anyway denial was a nice comfortable place to be and meant i didn’t have to do anything to sort it out. But she said I was right and that my front right wheel (my chair has six wheels) was coming on and off of the ground as I wheeled and actually I could see that in the reflection in a shop window.

So I emailed the guy who does my powerchair (at the moment I have two wheelchair technicians because my manual is NHS and they provide servicing for free. Consequently I see a lot more of the technician who deals with my manual). And I also mentioned that I definitely needed new tyres and suspected I was beginning to need new batteries. We spoke on the phone and he said he’d come out yesterday.

In the mean time I was using it as usual and trying not to worry about it. A few people had said to me since then it didn’t look right including a new staff member at Reading Station I’d never met before. I told him I knew and was working on it but in the mean time I preferred if we could pretend there wasn’t anything wrong. I’m not sure he got it but he tried to pat my shoulder in what I take to be sympathy. Let’s just say that I was whipping through the station quickly between trains and he was walking next to me and it wasn’t my shoulder he got…

The technician came mid morning yesterday and within about five minutes had spotted that it had a broken shock absorber, I asked if I could keep using it until they had the part and he paused at which point I added “bearing in mind I went all round Ascot in it on Saturday and round Oxford yesterday…”

Anyway, basically it’s not safe to use.

We chatted a bit more about the chair and he asked me if wanted the armpads replacing while he had if. I showed him a bit that I needed putting back after it had fallen off (the battery cover) twice in the middle of Oxford the day before and he went “are you trying to wreck it?” And well I had to admit that I wasn’t but it really does look that way.

Then after he asked me about book blogging having seen my email signature and I tried to explain, I’m not sure successfully, he left.

Taking my poor poorly powerchair with him.

And they’ve had some of their courtesy chairs stolen so they don’t have any available for me to borrow.

Several hours later he called me back. With what he described as “good news, bad news, and news”

When he got back to the workshop he found my chair has also got a cracked chassis and needs a whole new one. This, apparently, is not unheard of which I find very concerning. Especially as I’ve got a Quickie Salsa M and I’d always heard that Quickie and their parent company Sunrise Medical are one of the most popular/best brands out there.

This was the bad news, along with the fact that I’m not getting my chair back until next week at the earliest. The good news was it’s covered by the warranty (I’ve had the chair since Feb 2012). The news which was in between good and bad was the details how much my new tyres and batteries will cost. Let’s just say its £extortionate but cheap when you work out how long they last and how much taxis would cost (my dad is giving me a lift somewhere tonight. If I had t get a taxi it would be about £6 each way it’s not much more than a mile)

So I’m powerchair less at the moment which makes things interesting.

But it does mean my do NaNoWriMo in a low key way plan is out the window and I’m getting loads of writing done 🙂

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

Loser Like Me

This entry may come across as cagy. It is deliberately so.

I’ve been dealing with a completely ridiculous access fail for the past 12 weeks. Basically it’s done a complete number on my self confidence and depression, serving as a weekly reminder every Thursday that I’m different and that I’m not worthy of what everyone else has. Twelve weeks of being told they’d made a decision to do X about including me and then suddenly two weeks later we’ll do Y or oh no Z instead.

It is dealt with. I’m not exactly enamoured with the reasonable adjustment type solution they’ve come with. Full the same as everyone else access wasn’t an impossible dream here and is obviously what I would have preferred. They’re aware that they’ve upset me and for the most part what it’s done to me. The fact that during one of our conversations I was accused of using my disability as an excuse being why I say “for the most part”

I’m not saying I no longer care. I’m just saying that this 12 week course is now up and I’m trying to dust myself off and move on.

Anyway I have been listening to a lot of my feel good songs to cheer me up. On Thursday I suddenly realised that Glee’s Loser Like Me should have been on that list. And after listening to it I thought “crip parody!”

Not sure it’s good but I enjoyed writing it…

You may think that I’m a zero
But hey everyone you ever see
Probably end up like me
You may say that I’m a freak show (I don’t care)
But hey give it a little time
Bet life’s gonna change your mind

All of the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me

Push me up against your rancour
And hey, all I do is shake it off
Go and talk to your boss
I’m not thinking bout you haters
Cos hey I could be a cripple star
I’ll see you if you get this far

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

Hey you over there
Keep the “L” up, up in the air
Hey you over there
Keep the “L” up ‘cos I don’t care
You can throw your distance
And you can throw your steps
Like a rocket just watch me go
Yeah
L O S E R
I can only be who I are

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

♥ Emma

>So you had a BADD day

>I’ve got loads and loads to blog about and I’m definitely going to catch up tomorrow. But I just wanted to remind people that Blogging Against Disablism Day 2010 is this Saturday. Please pass the message on and take part if you want to/can. It’s really important and it’s usually interesting and good fun.

Today I was chatting to the hygienist when I went for a double whammy dentist and hygienist appointment back to back thing. She asked what I’d been up to and I said I’d been swimming this morning. So she was chattering away about how she likes to swim but doesn’t go often, which pool had I gone to etc etc etc. Then she asked if I needed someone to come to help me get dressed. I answered her in that sort of automatic way that you do at times – no not with getting dressed, I need help getting in and usually my friends come and do that but sometimes I’ve got the lifeguards to do it (beach area which doubles as ramped access and a shower chair).

I know that she was just making polite small talk. But that wasn’t polite small talk that was heading into the inappropriate disability related question realm and practically out the other side of it too. Not quite sure what’s the other side of the realm of inappropriate disability related questions but we were about 1 question away from discovering it. I suspect she may have twigged she’d said something stupid because she stuck to teeth related talk from then on. I’m letting it go, I think.

That can actually be viewed as disablism because she sure as hell wouldn’t ask an able-bodied patient that sort of question. I’d like to see her do that actually, probably be quite funny to watch.

I went to an event this evening and they paid for me to have an accessible taxi take me home. The guy got the seatbelt for me but refused to clamp my chair. He kept saying he didn’t need to, the seatbelt would be enough – and it is a very short journey I will admit but it’s incredibly dangerous and I don’t care if we’re only going 5 metres or 20 miles, I’m having my chair secured. And I kept telling him he did need to. In the end I told him point blank to either secure my chair or put the ramp back down and I would get out, walk home and make a formal complaint. He didn’t put all the clamps on my chair (missed the front on one side) but English isn’t his first language and he kept telling me to slow down (I do talk fast at times) and saying he couldn’t understand me and I was tired so I figured it was enough for the not quite 10 minute trip. That and the way he was push on my chair really roughly in ways he didn’t need to make me think he wasn’t sure what he was doing. Which is possible because I know the company do pull guys off their regular cars to drive the wheelchair accessible one as and when needed – and some of them hate it.

That’s disablism too because an able-bodied person wouldn’t have their personal safety disregarded like that – or at least not when the relevant equipment was available. And they wouldn’t have to argue the point so hard. I will be making a complaint.

Those are just my opinions and just one day in my life. Admittedly a worse day than I would usually have although not the worst ever (oh the stories I could tell!). But in my opinion it’s what BADD is all about, speaking out about those sort of things.

Please consider taking part.

>Emma and the no good, horrible, terrible day.

>So today:

I had trouble getting out of bed and waking up again

I got a t-shirt caught round the wheel of my powerchair

Had to resort to cutting said t-shirt in two to get it out but thankfully didn’t damage my chair

Was later than I planned getting to the bureau because of the above.

Was asked to advise rather than doing my SP which I didn’t mind (especially as I had a good client) but which always throws me off.

Broke the zip on my relatively new handbag and it can’t be fixed

Sent loads of things flying in the supermarket.

Had a random nose bleed

Discovered I’d gained a pound

My hip and knee hurt on my right leg.

I can’t really say it’s been a good day! But once we got past mid afternoon it all evened out and got a bit better.