What Have You Done Today To Make You Feel Proud?

(title is a lyric from the Heather Small song Proud)

A few days ago an acquaintance heard I’d done something and was really impressed. She was trying to encourage me to write about it for Tenants Times because doing so could inspire other people and it was a big deal what I’ve done.

I was frustrated by that conversation because I couldn’t see what the big deal was and I don’t understand why it’s news and people who don’t know me would be interested in it. Plus all I could see was it turning into some form of inspiration porn even if I was the one to write it.

I think she was frustrated by my not viewing it as a big deal and also I don’t think she understood my comments about inspiration porn (I feel I did a poor job of explaining it, in part because of previous conversations).  She commented that I’m worried to feel proud of myself. Which I denied to her and couldn’t be further from the truth.

But here’s the thing: what impressed her (and the two other people in the room) was in part what I did but mostly the fact I did it by myself. And in a wheelchair.

And here’s the other thing (which I didn’t think to share with her). In my circle of friends I can name at least three people who would have decided they wanted to do what I did and gone off and done it by themselves. Plus, it’s something I first did by myself in 2006

A friend has pointed out to me since that society considers this an unusual thing to do alone so maybe that’s part of the reason for her comments. Perhaps it’s something my acquaintance wouldn’t feel able to do.

I don’t view this as a massive inspirational achievement. And she’s right when she says I’m not proud of myself for having done it. But that’s because it’s normal for me. The fact I did it “in a wheelchair” shouldn’t come into it.

As a wheelchair user it’s strange that sometimes I can be doing the simplest thing and I get praise and encouragement when I really don’t need it. And then I get told I need to stop putting barriers on myself when I say access means I can’t do something.  Because the very fact I use a chair makes my existence a big deal.

It’s ableist, in a way.  Because if an able-bodied person had said “hey I did this” it might have turned into a conversation about how she wouldn’t have done it. But it would never have turned into a conversation about writing an article, being inspirational and needing to be proud of myself.

Able bodied people are allowed to be normal and mundane you see. Wheelchair users are either sad people who suffer and need to be pitied or objects of inspiration and awe who are overcoming barriers and our disabilities. We can’t be normal, it’s the law.

It’s pretty fucking othering to be criticised for not being proud of something that isn’t an achievement, I’ve done loads of times and didn’t even have to put a lot of thought into. That reminder that you’re different, you’re not normal and you never can be hits like a ton of bricks. Hearing them talk about how I should write about it to inspire people frustrated me because I’m more than the girl in the chair. Being criticised for not being proud left me feeling pretty shit about myself to be honest.

 

 

 

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…)