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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.

So Take Me As I Am

(title is a lyric from the Meredith Brooks song Bitch)

A couple of weeks ago I was asked how I’d enjoyed a show I went to by a member of staff there who I know. I had enjoyed it but there had been one thing that had happened – which was tangentally access related – that had really irritated me.  It was totally inconsequential and unlikely to be repeated but it had had an impact on my enjoyment and they asked so… I said “If I could just make one slightly bitchy point….”

More recently than that I discovered that the actions of someone else have left me with a huge mess to sort out. I feel more than a little screwed over and beyond frustrated as I did everything I was supposed to do but the person who was supposed to do the next part didn’t and because they didn’t do it at the correct time they now can’t.  And I’m the one who will lose out if it’s not done so I need to do it.  Their failure makes me look bad.

I was ranting to a good friend about that and I said “I know that this is really bitchy but I hope X happens because of this”

She stopped me and said “that’s not bitchy at all.” and made some other comments about thinking I’m acting like a bitch when I’m not.

I say stuff like that all the time when I complain or raise issues.  Phrases like “I don’t mean to be a bitch but…” cross my lips all too frequently.  And really they shouldn’t.

Complaining or raising issues in a constructive or fair way is nothing to be ashamed of. It’s only right and I’m sure that if able-bodied people had to deal with half the crap I have to they wouldn’t be half as calm and dismissive of it as I can be.  Recently a few things have happened which have made me realise just how abnormal my version or normal really is.

A third issue – one of disabled toilet accessibility – reared it’s ugly head. I really thought all the able-bodied people around me were blowing it out of proportion.  It was just one of those things. It happens and it’s irritating as hell and it really shouldn’t but what can you do?!  There were a couple of ways I could work around it and I’d almost never go there again anyway as I was unlikely to have a reason to.  I knew I should complain about the issue and have something done but it happens a lot of places and I was in the middle of dealing with the second incident I mentioned above and just didn’t have it in me to do anything about it.

When one of the people running the event (not the venue) asked me about it I did tell her about it. I told her it both was and wasn’t an issue and had to stop myself talking it down. I don’t think I did a good job of that. And one of the things I told her about was how I worry that people will think I’m alway moaning or never happy.  That I’ve heard those phrases along with “ungrateful” and “argumentative” many times and “you have to understand we’re doing our best” and “we don’t really get many wheelchair users” are among the stock excuses.  It grinds you down.  I wonder, sometimes, if part of the way I so often almost apologise for my complaints or put myself down by phrase it as “being a bitch but” is because subconsciously I think that’s the only way I’ll be taken seriously.  I think the person I was talking to go it and she reassured me they don’t think that about me.

Only.

Later in the session another member of staff wanted to ask me about it. Fine. They wanted to know – was there actually a problem or was the problem that I have a new wheelchair and I’m not used to it yet?  I took her and showed her how it wasn’t big enough for my chair and she got it. But talk about proving my point!

I wish that was my only example of that sort of thing from recently.

It’s not – last Sunday a well known pizza chain refused to serve me because they had a booking for a short time later that they’d chosen to book all of their (small) downstairs for and they had no lift. They had no desire to come up with a solution (I could see from how they had it laid out that a small rejig could have fitted a table for me and my friend in too) and didn’t even apologise. It was clear that they considered I had the problem not them.  And a request I made early this week to another organisation for an explanation why something had happened resulted in my receiving an email Friday that didn’t explain it and basically suggested I should put up and shut up. Again, I was the one with the problem not them.

My friend above who made the comments about thinking I’m being a bitch when I’m not is right, I should stop doing that.  But it’s a bloody hard habit to break when society is desperate not to take me as I am but to blame me for it instead.

An Unexpected Revelation

At CAB today we did some training on how to support clients who are appealing disability benefit decisions. What to do, what type of information to put in the various letters (for mandatory reconsideration) or forms (for appeal).

And the subject of getting dressed came up.

So we covered  the need to check how long it takes, do they avoid certain items of clothing or look for certain fastenings because that’s the only type they can put on (for example I can dress myself but I mostly wear trousers I can pull on and don’t wear socks as I can’t get them on and my shoes sometimes fall off as I struggle with them).

Then someone raises the point of needing to sit down to get dressed.  Someone else said “yes, because that’s not the normal way to get dressed.”

The conversation moved on pretty quickly but I was sitting there thinking “What? Sitting down to get dressed isn’t normal?”

I did kind of know that – I’ve seen many friends and family members get dressed standing up but at the same time it surprised me to hear something that’s my normal described as not the normal way of doing so.  It probably shouldn’t have done but it felt like a bit of a revelation. I think I’d been kind of assuming that sitting to get dressed like I do was normal and it was the ablebodied people with their insistance on standing to get dressed that were the unusual ones.

I mean, really, why do that when you could just sit down somewhere comfy?! It makes sense to me. But if society wants to see their weird hopping from foot to foot and trying to balance as the correct way to get dressed I’m not going to argue with them.

I would so hate to be normal after all.

Yes I Can

Channel 4 have a released an advert for the upcoming Paralympic Games.  It’s once again based around the “superhumans” concept they used when broadcasting the Paralympics in 2012.

I like this advert. I like the way it shows lots of disabled people doing both sport and everyday things like brushing their teeth.  I like how it makes disability both an in your face thing you can’t avoid and a normal thing.

I also especially like the fact that signed, subtitled and audio described versions are available making this a really inclusive, accessible advert. That’s fantastic.

At the same time I’ve been reading and hearing a lot of things about how this isn’t a good advert and shows disability in a poor light, makes it seem that we’re all amazing and inspiration and we can do anything.

I agree and I don’t.

I agree that it’s not as simple as wanting to do something and declaring that I can do it.

In my life I’ve done a lot of things people said I never would.  I used to joke that if someone told me I couldn’t do something I’d do it just to prove them wrong.  But there are always going to be things that I can’t do. Some of that’s down strictly to having CP and in other cases it’s a little bit more complicated.

In the advert we see a careers adviser tell a boy in a wheelchair “no, you can’t.” Then we see him playing wheelchair rugby and screaming “Yes I can!”

But here’s the thing: he can play wheelchair rugby in the paras (or at least I assume he’s a paralympian) because the opportunities he needed to learn to play and get good at it were there.

I did adaptive sports growing up – I used the gym, I went horse riding, I swam occasionally and I did archery.  I lived near a brilliant Riding for the Disabled centre and there’s an adaptive leisure centre in Oxford that my parents (and occasionally friend’s parents) took me too at least once a week.  But the one sport I always wanted to do as a teenager was wheelchair basketball. And no where near where I live provided it.

I could – and did – do many sports. I couldn’t do the one I dreamed of. Yes I can only gets you so far when there’s no where to learn, train or play.  I sail now because there are people who give up their time to support disabled sailors, set up the boats, fundraise, man a safety boat, teach people and buddy if support is needed.  And because my Dad and a friend share the driving. Yes I can gets me a long way but if no one could take me it wouldn’t work. As it is most of the sites regattas are held (possibly all apart from Oxford) don’t have hoists so I don’t really take part in those.

Disability is a lot more complex than the advert shows and the yes I can attitude is great but it’s not the be all and end all. It’s just the beginning.

I don’t agree with the idea that the advert is a bad thing because I think for some people (I’m particularly thinking of disabled kids) seeing that number of “people like them” being celebrated on TV could be a really empowering thing.

(I also think the “We’re the superhumans” tag line really should be applied to both paralympian and Olymians because that level of sporting prowess is pretty incredible disability or no. But Channel 4 just have the rights to the paras so…)

 

Promises to Keep

When I ordered my new powerchair (8th June) I was told it would take between 4 and 6 weeks to come but the manufacturer (Sunrise Medical) had been told it was urgent.  And if I’m completely honest I didn’t believe that was going to make any difference.  But my previous chair was from the same manufacturer and came really quickly so I was hopeful it would be on the sooner end of that estimate.

5 weeks later I asked my supplier if they had any news of when I’d get the chair and if not could they get me an update.  And it turned out Sunrise had decided that my chair needed to be put through the custom build department which is based in Germany.  That had caused a delay and they hadn’t told us (allegedly forgot).  It was definitely going to ship on 27th July.

So I was expecting to hear from the supplier yesterday or today with a delivery date and when I didn’t I emailed to ask for another update.  They checked with Sunrise then rang me. It didn’t ship as planned.  And once again Sunrise never bothered to tell us. It finally shipped yesterday evening (6 days later than planned).  I’m not sure when I’ll get it as the supplier wouldn’t comment when I asked – but it may well be a few days after they get it as they need to do a full inspection before they can bring it out and once it’s here they need to fit it which can take a couple of hours.

I don’t know why the delay – I was told “that’s Germany for you.” and I don’t know about that but what I do know is that delays and poor communication are beyond common with disability equipment and wheelchairs in particular.  I’d have less of a problem with the delay if as soon as it was ordered they had told me “sorry, it’s got to be manufactured by the custom build team due to the spec you want and that’s going to cause a delay, we’re looking at 7 weeks.”

For the past two months since my Quickie Salsa broke I’ve felt like my life was on hold a bit. Especially for the first two and a half weeks when I was housebound. Less so since I got the loan chair and could get out locally but I’ve not been able to get out and about further afield.  And there were events I’ve had to say no to.  I feel like I’ve not done anything or been anywhere since it broke. I made the mistake of saying that to Mum and she proceeding to list everything I’ve done and you know what I have done loads but I’ve also missed out too and it’s beginning to look like I missed my only opportunity this year to do something I’ve done every year since 2012.

I want the Jive to be the best chair it can be for me.  So I do want them to take their time with it and build it properly and well.  But at the same time I wonder if the people working for Sunrise realise what it means to me. I need that chair – I’ve got a life to live: friends to visit and places I both want and need to go and shopping to do and cocktails to drink.  And most of all I’ve got promises to keep and miles to go before I sleep.