Random Bullet Points of Life

For the small things in life worth mentioning but perhaps not worth an entry of their own

  • I have several part written blog entries and a few others that I’ve thought seriously about but not posted. These may or may not see the light of day.
  • This week is likely to be the last sail of the season.  They’ve not said as much but given how early we’ll have to be off the water I can’t see managing the week after.  I both am and am not ready for the season to be over.
  • I have some exciting plans for the off season
  • For the past few weeks I’ve been writing a new 101 in 1001 list.  It’s over four years since I last had an active 101 in 1001 list and I think this is a very different list to the ones I’ve had before.
  • Current powerchair mileage is roughly 135
  • I’ve been enjoying watching the paralympics but am sad they’re over and wishing I’d made the time to watch more.
  • Earlier this week I raised a small and tangentially access related niggle with someone. Good: they really got it. It’s not something that can do anything about but perhaps my raising it will prevent it happening again. Bad: I felt the need to start said conversation with “I know this is kinda bitchy but…”
  • A friend from uni and I went to see Mamma Mia the Musical in Birmingham. It was excellent. If we’d been able to go on the date we were originally supposed to (I changed the tickets as engineering works would have meant rail replacement to/from Leamington Spa) I would have tried to get tickets to go a second time. But unfortunately we went to the matinee on the last day.
  • There doesn’t seem to have been a lot of reading going on lately. Basically unless I’ve been on a train it’s unlikely I’ve been reading.

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…)

 

Disability in the media

I’m paying a second visit over at Bea Magazine this month.  I wrote about the disability issues which were raised by the news that paralympian Oscar Pistorius has been arrested on suspicion of murdering his girlfriend Reeva Steenkamp.

You can read it here:

Disability and the Reeva Steenkamp Murder

The coverage of disability in the media has always been problematic but I’m really hoping this might be the beginning of it changing. I suspect that it’s more likely that it will change the way violence against women is covered by the media than disability.  Still I hope.

Last year I was asked to speak to the local paper about my sailing group having some new equipment after fundraising for over 6 years and raising half a million pounds for it.  It was on the phone and I did tell them I was a wheelchair user because it was relevant (the equipment will mostly help wheelchair users and means I can be more independent).  I didn’t tell them that I had CP.  But in the article it said “Ms Crees who has cerebral palsy and uses a wheelchair said…”  Because that’s what defines me in their eyes.

That and another experience a few years ago where something I said was taken slightly out of context to make it appear like a terrible disability thing in a news clip mean I would be very wary talking to the press again. Basically they obviously really wanted to me to answer yes to a question and wouldn’t stop asking me varients of it.  In the end I said along the lines of  yes it seems like that to you but…”  The final news clip had me just saying “yes it seems like that.”

And I’m just me.  A regular crippled girl who writes and likes to sail.  I’m not high profile at all.  The fact that Oscar Pistorius is high profile is a big part of the reason why there are so many issues relating to disability in the coverage of Reeva Steenkamp’s death but it’s not the only reason. Crimes are committed by disabled people every day.  People are murdered everyday, sometimes by those disabled criminals or by others.  That doesn’t always hit the news. This did and brought with it issues about disability magnified to a whole new level.

I didn’t think of this until after I wrote the piece for Bea but I suspect disability is why it’s getting so much coverage.  If a regular Olympian, say, Greg Rutherford (being only he was the first to come to my mind) was accused of the same crime it would be a big deal.  But I’m not sure it would be quite as big a deal with so many people shocked and talking about it as when it’s the so called “Disabled hero”

I’m not the only blogger who has been tackling these issues.  William Peace has also written about the problem of disability role models (in which he also covers Helen Keller) over on his blog Bad Cripple.

Monday Music: True Colors

Feels like ages since I’ve done one of these Monday Music posts.

One of my favourite old songs is True Colours. It’s just a brilliant song with lyrics that call out to me and a melody that gets stuck in my head without fail. I also think its a really encouraging song with its message about being yourself and not hiding away.

I’m also really big on disability pride and of our culture as disabled people. Which is why this new version of the song is so fabulous for me. It’s performed by The British Paraorchestra and features several Paralympic athletes and the Kaos Signing Choir (which is a choir made up of both hearing and deaf children who sing and sign together).

It’s got wheelies and blind people. It’s got signing, people with sticks and a kid with a Kay Walker. They’re singing and playing instruments and having a brilliant time. Interspersed are a few clips of the Paralympics. I noticed one of Ellie Simmonds in the water looking a little tearful after winning a race. Another was the guy playing table tennis with one crutch and lunging for the ball so hard he fell over. It’s even got a solo sung by a lady using her nose to operate an iPad which then speaks/sings it for her.

It’s an amazing example of inclusion and of people embracing themselves and their disabilities and their culture. My culture.

It makes me very happy.

The song is available on iTunes and there’s a bit of a campaign to get it to Christmas number one. It’s so so good and well worth buying. Besides, what else are you going to spend 79p on this week?

You with the sad eyes
Don’t be discouraged
Oh I realize
It’s hard to take courage
In a world full of people
You can lose sight of it all
And the darkness there inside you
Makes you feel so small

But I see your true colours
Shining through
I see your true colours
That’s why I love you
So don’t be afraid to let them show
Your true colours
True colours are beautiful,
Like a rainbow

And don’t be unhappy, can’t remember when
I last saw you laughing
If this world makes you crazy
And you’ve taken all you can bear
You call me up
Because you know I’ll be there

And I see your true colours
Shining through
I see your true colours
That’s why I love you
So don’t be afraid to let them show
Your true colours
True colours are beautiful,
Like a rainbow

Ohhhh
I can’t remember
When I last saw you laugh
If this world makes you crazy
And you’ve taken all you can bear
You call me up
Because you know I’ll be there

And I see your true colours
Shining through
See your true colours
That’s why I love you
So don’t be afraid to let them show
Your true colours, true colours
Are beautiful like a rainbow

I see your True colours shining through
See your true colours
That’s why I love you
So don’t be afraid to let them show
Your true colours
Your true colours are beautiful,
Like a rainbow

Ohhhhhhh

>Interesting Times

>Lately I feel like I live in Interesting Times as in the Chinese saying.  It’s certainly been an interesting week.

Monday my powerchair broke down with no warning. In the middle of Sainsbury’s car park. In the drizzle. Although luckily it wasn’t raining as such at that point in time. I tried to talk a Sainsbury’s employee through putting my chair into freewheel but he couldn’t do it (whether my instructions weren’t right/clear enough or he didn’t force it hard enough I don’t know) so my plan of getting a taxi back here fell through.

I called my parents house on the off chance someone was there not expecting there to be. But my sister had had an accident and been in minor injuries with my mum for a few hours. They’d just got back. I also managed to get hold of a local wheelchair engineer and he came for my chair and mum came for me.  It did make me smile to see his van turn in one direction towards me and mum’s car turn in the opposite direction towards me at the same time.  Talk about the arrival of the cavalry!

My chair has since been fixed, costing much less than I expected and came home yesterday so that’s good. I don’t think there’s much left that could need replacing that hasn’t already been done at least once.  It reminds me of that episode of Only Fools and Horses where Trigger gets rewarded for having the same broom for some huge number of years but then adds “I’ve had 6 new heads and 7 new handles but still it’s not bad for the same broom” or some such. Only I don’t think my chair is quite that bad…

Thursday I felt lousy on and off all day. To such an extent that the ambulance crew who took me to my appt in spasticity clinic presented me with a just in case sick bowl (I had told them I didn’t feel properly sick but they insisted) and tissues. Late night, early morning and lots of stress me thinks. My alarm didn’t go off. On the plus side having said they were taking another patient to the JR first they then took me to OCE first instead. Win.

I was just about an hour early and wanted to go over to the main building in search of proper food.  The receptionist said “no please stay in the building he’s running to time and you might go in early”. And I then went in just over an hour LATE. (which he didn’t even realise. his nurse apologised to me and he went “oh are we very late?”) I chatted a bit to another lady in the waiting room and her carer (that started because I asked about the over the knee stripy socks she was wearing – v.cool) and did a load of writing on my iPad.

The consultant said that some patients only need one dose of botox and then casting. I’ve had a very good response and my ankles are improved. He went on to say with some patients he thinks definitely repeat the botox and others he thinks definitely not. And me being me I fall slap bang in the middle.  We had some discussion about that.

End result being that he wants me to go back “in a couple of weeks” to see him and my physio in a joint appt as she knows me better. If I feel I’m getting worse in the meantime I can ring his secretary and should be able to go back within a week or so for more jabs. I don’t have a date to go back but when I said “are we talking before or after Christmas?” he said almost definitely before.

Oh and one of his comments was about it being a bit of a schlep from where I live to his clinic every 3 – 4 months if they keep giving me the jabs. This amused me because it really isn’t but going back in two or so weeks really is. Not least because this clinic is meant to be a joint clinic with the physios – alternating between my physio and a specific colleague of hers.  I did see the colleague floating around but not to speak to and she wasn’t in the room during my appt.

I have however been using the term schlep ever since. I find I like it.

Good news to end on:

I have most of the paralympic tickets I applied for but not all. And (this is the best bit!) I have tickets to both the opening and closing ceremonies!!!

One of my besties who just lives about ten mins drive from me also has tickets to the closing ceremonies. Also a wheelchair space. And also in the same category as I have. Hows that for a coincidence?!