You Know You’ve Got CP When…

…something you buy regularly in the supermarket gets moved from the very top shelf to the very bottom shelf. And as you’re trying to put two packets in your basket all you can think is how much easier it was to reach it down from the top shelf.

I am aware how completely ridiculous that sounds but its true! Must admit I laughed at that.

The seat riser on my powerchair makes moving up to reach high things so easy. And was worth every penny. The only part of sainsburys that properly stumps my independent crip streak now is frozen food with its cabinets with doors that open outwards.

But leaning down and across isn’t easy (but is vaguely doable) as the lateral supports and spine align bits which keep me from slumping stop me. And I’ve yet to hear of a wheelie that drops you down.

I do love my new Quickie Salsa (well, I guess it’s not so new now) with all its bells and whistles and the independence it gives me.

So I’ll just accept that there’s now a new definition of wheelchair accessible in my life.

And if you see a crip in a red powerchair reaching for low things in Sainsburys and giggling? Well, now you know why.

(For more tales of the supermarket on wheels with a definite make you smile factor check out Hannah’s post on the subject

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

Nothing About Us Without Us

I’m trying to work my way through a series of disability specific terms and especially some disability specific concepts and define them for my blog. A sort of glossary of disability according to Emma if you will.

I’ve also been asked to contribute monthly to Bea Magazine. My first piece went up there today and happily the subject I wanted to write about for them is also something I would have written about in my disability glossary. (Although I hadn’t actually planned for it to me the next entry in my glossary). I’m sure all of my readers are now breathing a sigh of relief that they don’t have to read two lots of my drivel on the subject.

My article is Nothing About Me Without Me.

The article contains a much better explanation with detailed examples etc. And people seem to have liked it. Or at least a couple of people liked the Facebook post of the link, my Dad said it was interested and Mum said it was good (but they are obv biased).

But basically nothing about me without me (or nothing about us without us) is a very commonly used disability rights term to declare the fact that no decision should be made for or about a disabled person without their input. Obviously for different people and for different levels of disability the way decisions are made will vary. And some people will never be able to make a complex decision such as where they live. But they can still have a say. Even if its just whether they want their bedroom painted red or blue. And even if they can’t actually speak.

International Day of Persons with Disabilities

Today is the UNs annual International Day of Persons with Disabilities.  That’s a very medical model term (although I suspect it was changed because it’s “people first language”) and I’m much more of a social model girl so I shall henceforth refer to it as a day of Disabled People.

The UN statistics state that 1 billion people worldwide have a disability or approximately 15% of the population.  I don’t know how they’ve classified disability but I have to say whilst the 1 billion figure feels right to me based on previous figures I’ve heard, I was a little surprised it was so low as 15%. I realise this makes no sense!

I wanted to write something and I wasn’t sure what.  And then I got to thinking that somewhere, right about now, there are new parents with a brand new baby, maybe even in the hospital where I was born.  We’ll assume they had a baby girl and they named her Emma, like me.  She was born today.  And one day her parents will be sat down and told by the doctors “your child has Cerebral Palsy”.  Perhaps she was born prematurely and deprived of oxygen like I was. She might end up a wheelchair user or she might end up walking with crutches.  Regardless they are now carers and she is disabled.  She’s still their baby girl, their Emma, and they love her but she’s not the what they planned for when they said as all expectant parents seem to “as long as it’s healthy”

Tonight, another family will sit down to tea together.  It’ll be Dad and his young kids sharing a pizza and laughing and joking.  None of them knowing that when Dad wakes up tomorrow he won’t be the same guy, he’ll have had a stroke while he slept.  Guess what? He’s disabled now too. Amongst other things he’s lost use of his mouth and now needs tube feeding and a communication device. He’s still Dad… but he’s different.

And there’s a young woman somewhere – rushing off to work a little bit late because on this cold morning her warm bed was just too comfortable to get out of when the alarm rang.  She’s driving, maybe a little bit faster than she should but at 18 she only just passed her test and thinks she’s invincible. But the roads are icy and her car skids.  She survives but has to have an arm amputated and her life is never the same again. But she’s still her.

You might wonder what disability has to do with you or why you should care but the fact of the matter is – we are the worlds largest minority group.  And chances are one day you or someone you love will be part it too.

I’ve always thought that I was very lucky to live in the UK and that I’m accepted and I live a brilliant life.  A lot of things could be better but we weren’t doing too badly. But things have changed here in the UK and I don’t feel as accepted. This is something Kali has written about much better than I could in her post When Did We Forget?

So what do I want on this International Day of Disabled People in 2012? I want people to realise that there is no us and them. We are all in this together because there is no magic spell or shield you can use to prevent you becoming one of us – a disabled person or as we are now more commonly know – scroungers.

I can just about cope with living in the world as it is now – although I dearly miss the community we had and the world we lived in pre coalition and scroungers. But my hope is that for baby Emma, born today and newly disabled things are different.

I hope that on 3rd December 2042 when she’s my age it’s simply just another day and she marvels that disability was ever such a different big deal of a thing that it had to have it’s own day. I have absolutely no idea how we can get to that point. But I know that by everyone working together and doing what they can we can definitely do it. Because we’re disabled. But we’re also awesome when we come together as a community.

 

 

Random Bullet Points of Life

  • I’m getting over a nasty cold but it didn’t go to my chest and I didn’t need antibiotics.  Lots of win there.
  • Depression and low mood have been a big issue in the last few days.  I think not getting out and feeling ill have had a lot to do with that.
  • I’m in the middle of the IB to ESA transfer and it’s horrific.  Mum and I finished the form today and she asked if I wanted to put anything in the “any other info box” and all I could say was “i’m just done with it.”
  • I really did want to write in that box “yes I have lots of disabilities and problems but I’m fine, damnit.”
  • Bizarrely other than a hysterical crying fit when I heard my transfer was starting I’ve gotten through the forms without crying despite finding them really hard and upsetting.
  • There’s a possibility some of the stuff I’ve been doing is making a difference for more than just me
  • I bought a new phone – a Samsung Galaxy Ace Plus and I absolutely love it.  But I also appear to have lost it and am getting in a panic that it’s gone.
  • I dropped my iPad and bullseyed the screen earlier.  Bizarrely it’s still working but I’ve an appt at the genius bar later in the week.
  • Tonights technology woes felt like much more than I could handle right now – the straw that broke the cripple’s back!
  • I will have some writing in a few places soon
  • I’ve been listening to and very much enjoying some of the Narnia audiobooks.
  • I’m not sure how well I’m coping right now.
  • I’m surrounded by awesome people including a friend who called in her way to work one of the days I was poorly simply because she knew I needed a hug.