awareness,  CP related,  songs of my life,  Uncategorized

>In The Deep…

>

In the Deep

Thought you had
all the answers
to rest your heart upon.
But something happens,
don’t see it coming, now
you can’t stop yourself.
Now you’re out there swimming…
In the deep.
In the deep. Life keeps tumbling your heart in circles
till you… Let go.
Till you shed your pride, and you climb to heaven,
and you throw yourself off.
Now you’re out there spinning…
In the deep.
In the deep.
In the deep.
In the deep. And now you’re out there spinning…
And now you’re out there spinning…
In the deep.
In the deep.
In the deep.

And the silence,
or your secrets, well
raise a worry hand.
Well, you can pin yourself back together,
to who you thought you were.
Now you’re out there livin’…
In the deep.
In the deep.
In the deep.

In the deep…

Now you’re out there spinning…
Now you’re out there swimming…
Now you’re out there spinning…
In the deep.
In the deep.
In the deep.
In the deep…

In The Deep – Bird York

I always thought I had all the answers. That I was the strong one, the one who everyone looked at and thought “that’s Emma, she fights past her CP and doesn’t have a problem with it.” I have CP, it doesn’t have me and all that jazz.

And to a certain extent both of those statements are true. It has always been very very hard for me to admit to others completely that a part of my attitude is at times nothing but a big phony act. But then again doesn’t everyone put on an act for the world?

I didn’t see this, “crash” if you will, coming but came it did, and send me in a spin it did. And a big part of it is related to having found some disability related stuff pretty hard lately. I did write about most of it here but I don’t think I made it clear just how much it affected me. So many people told me I was an inspiration to them that it was hard for me to say hey, you know what, I fucking hate this CP lark at the moment.

I’ve been realising something lately – until I admit that, until I throw off my strong girl act – I’m not going to get better. So it’s time I did as the song said and let go, shed my pride.

Sometimes having to live with CP is the hardest thing I’ve ever done. And maybe it’s the hardest thing I will ever do. Sometimes it really, really, really sucks and I want to scream at the injustice of the fact that this is my life – all i’ve ever had and all i ever will have.

But as long as there are times where I can sit there and say having CP is ok… as long as I recognise that sometmes I get opportunities because of CP and it’s not all bad… I’ll be OK.

I read something yesterday – 1 in 7 people in the UK have a disability, a total of 9.8 million people. The last data on this was complied in 1996 when there were an estimated 750,000 wheelchair users.  28% of wheelchair users are younger then 60. Lady Bracknell explained the importance of this better than I ever could. But you know what it made me realise?

I may truly believe (and I do) that my destiny/calling in life is to raise disability awareness and show that disability is not the end of the world… but it;s not just my responsibility. There are a hell of a lot more people like me out there then you would first think… and not all of them are in wheelchairs, not all of them have physical issues but we all have something in common – we live a different life through necessity not by choice.

Thinking about CAB… I can think of three others who volunteer there now who fall under the definition of “disabled” and three others who recently stopped working there who do as well. Plus there is at least one person I know of there (hmmm maybe two) whose life is affected by disability even though they are not disabled. And that’s just out of the people I know well.

It doesn’t matter if at times I find CP hard… what matters is awareness of the fact that disability exists and more importantly of the sheer scope of disability. As a disabled person I’m more aware of it than your average Joe. But even I didn’t realise we were talking one in seven people. And maybe admitting that it’s hard isn’t going to help just me… maybe being more open when I’m hurting and when I’m struggling can raise just as much awareness and give hope to people just as my strong girl act can.

The hardest part of disability awareness, and probably the biggest reason why I have struggled so much with my need to be strong is the fact that people believe disability doesn’t affect them, they aren’t disabled, they don’t know anyone who is disabled so what does it matter if they participate in acts of disablism?

Anybody in any place can be disabled, anybody in any place can become disabled just like that… I was the premature baby who fought for her life and won that battle but gained a disability in the process. Tomorrow you might wake up and find you’ve had a stroke or you might take your eyes from the road for a second to quiet a screaming child and there you have it, the moment your life changes forever and you get your lifetime membership to “the one in seven club” – congratulations you too are now disabled.

And as for not knowing anyone with a disability?

One in Seven people.

Do you know seven people? Because then chances are you know someone with a disability. Sure they may not be in a wheelchair and it may not be obvious that they are disabled. But we’re there, we’re everywhere. And tomorrow, next week, next year… you might be joining us in our elite club. You might be out here with me trying to keep on swimming, to keep on spinning.

In The Deep.

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