Tuesday, 10 December 2013

It's Time To End Disability Hierarchies - We're All In This Together

Luckily I know that periods of writer’s block get more frequent as you get older. Until the last year or so, I hardly had any, and if I did, they were very short. It’s just a pain that the last year or so is when I’ve most needed to do it!
If I’m honest, (especially in the last year), you could put a bunch of facts in front of me, and I could do something with them, but I know the standard wouldn’t be good enough for ME, so I’ve shied away from it. That in itself, frightens me in a way.
I think it’s partly the depression, partly lack of energy which all ties in. It’s the fact that campaigning in other ways takes up a lot of time. Writing is now more of a side issue than it has ever been before. I don’t like it, but that’s the way it’s been.
Then there’s my health. Someone says to me, ‘Helen, write about this’ – and my body or my mind says, ‘you’re having a laugh, aren’t you?!’
No matter how much I want to, I can’t argue with a body or mind that says no. I did it for long enough. As a result some of my commitments were scaled back, writing wise, but that’s the way it has to be.
In some ways it’s good though because it’s meant I have had to find other ways of doing what I need to do, which I guess is where ‘Radical Spirit Radio‘ comes in. There are ways and means – always. If you can’t get something to work one way, then you find another way.
It’s one of the most important things having a disability or illness teaches you, because it’s a battle every day, whether you’ve been disabled for life or for six months, it doesn’t make any difference. You still face the same battle, strain, limitations and heartbreak. Just because we’ve had it for life, and we’re so-called ‘used to it’, it doesn’t make it any easier.
We haven’t had the life or the chances or the freedoms, that the ‘newbies’ have, and yet some people think that we hurt or suffer less. It’s not less, it’s just different.
I hate hierarchies in disability or illness as much as I hate them in campaigning because, after all, every one of us is fighting a similar battle and having to do our best at it. Nothing else really matters.
Maybe if I wasn’t disabled and ill, I could have been a journalist. I would’ve had the energy when someone says ‘write about this’ to say ‘ok’. I would’ve been a mum by now, so, do I suffer any less because I’m a ‘lifer?’ No, I don’t.
I will NEVER KNOW what ‘normality’ is like. I’d love that experience – just once. I’ve never had those chances to build my life the way I would’ve wanted it. How anyone can think that it is less painful, or that ‘lifers’ aren’t worth listening to (because we’re ‘used to it)’ is beyond me!
You are never ‘used to it’. It still hurts. We should listen to each other. We are ALL of EQUAL value in this.
We should be helping each other, learning from each other, and sharing experiences.
‘Lifers’ should not be excluded from discussions. It sometimes feels like we are, because of the (very short-sighted, and misguided) idea that we suffer less. I wish.
We suffer differently. If we allow ourselves to be, we can be tortured by ‘what ifs’ and ‘if only I’d had the time to have a family or a career’, but there was no time for me. There was no break, or rest. It’s been strain, pain, and thinking of ways around things, from the word go – and it’ll be more of the same, until the day I die.
I’m not saying to have health, strength, and ability and then lose it is not sheer hell. It must be. It must rip you apart, but ‘lifers’ feel ripped apart too. Just because we’ve never had it, it doesn’t mean that we don’t want ‘normality’, grieve for it, need it and miss it any less. Contrary to what some people may think, it is possible to miss what you’ve never had – and actually, in some ways, it’s heightened because you are wondering what it’s like. Those things I always dreamed of and wanted will be (and have been) permanently out of reach for me.
It’s the simplest of things that others take for granted like becoming a mother, and holding my child in my arms. Isn’t that supposed to be ‘every woman’s right?’ It’s not mine. I’d love to jump in the air or kick up leaves, or carry a cup of tea across the room.
Do I not deserve support or help to come to terms with the fact that I’ll never have those things? I’ll tell you something, in my experience at least, you never really do – not deep down. You just find ways of ‘getting on with it’, getting through each day, and making the best of a bad situation.
Just because I’ve had Cerebral Palsy and other illnesses for thirty plus years, rather than six months, should my opinion matter any less? I have things to say, experiences to share, ideas that might help. I’ve been where the ‘newbies’ are, because we all have to try to accept our lives, and our limitations. It doesn’t matter how (and when) we got here. What matters is the way we deal with it, and what we make of it.
The voices of ‘lifers’ have a right to be heard too. Please don’t be as shallow as to think that it’s easier for us. It isn’t. We need to help and support other, not make divisions and hierarchies where none really exist.
We really are in this together.

Sunday, 8 December 2013

Poor Santa! (Poem - 2012)

Poor Santa tonight had clumsy feet,
For every time he had to repeat
This sliding down the chimney lark
He tripped and stumbled in the dark!

Poor Santa had a tickly nose
And with so many places left to go,
He’d fallen once again to his sooty knees
As he held back yet another sneeze!

Poor Santa decided it was worth a try
For another bite of a fresh mince pie
And when reaching upwards for the plate,
Clumsily fell over some roller skates!

Poor Santa he hurtled towards the door
The pesky plate shattering to the floor,
Next there came his loud ‘Hic Choo’,
And Santa didn’t know what to do!

Poor Santa had made so much noise
He woke up the little girls and boys,
Tiny feet padding down the stairs
He knew that they would catch him there.

Poor Santa this night so far it was tragic,
At the last moment he remembered his magic,
With a click of his fingers and seconds to spare,
He luckily vanished into the air!

Poor Santa red faced and out of breath,
One year those children would be his death,
Slowly he clambered in to his sleigh,
Relieved to make a clean get away!

As he took to the air with a ‘Ho Ho Ho’
There was something poor Santa didn’t know,
Those startled children were aghast to find
He’d gone and left his full sack behind!

Drawing by Catherine Love