Tuesday, 29 March 2016

The Road to Acceptance

In my early days of campaigning, (before I called it that),I went to 'Gateway Club' on a Thursday night, and met a volunteer named Karen.

One evening we sat on the bench outside the hall, and I told her what I was going to try and do.
She sat in silence,nodding occasionally as little me told her how I wanted to make things better and help people understand disability.

When I'd finished, she gave me a hug and said, 'I hope you can. You'll have your work cut out. You might find it harder to be listened to because you have a lifelong disability.'
I didn't understand what she meant, but I didn't really want to question her further because she seemed sad.
Karen only came for a few more weeks, and then I never saw her again.

Now, nearly twenty seven years later, I know she was right. Nobody listens to 'lifers', because in their eyes we haven't lost anything and we are 'used to' our lives.

People newer to disability or illness feel like they have lost everything, so they shout louder and they often belittle and ignore the experience of lifers because we haven't had it - (strength, health, ability, life),- so what do we know about what it feels like to lose?

That's where they're wrong. We know. We spend a lifetime grieving for what we've never had and never will have. We watch people newer to disability or illness, with their children, or talking about jobs or experiences we can never have. Do you really think that we don't know what it's like to feel the pain of loss? Are our experiences of life and how we're (still) coming to terms with it, any less valid than yours?

We're all on the same road of acceptance! Don't make the mistake of thinking that we're used to it, and therefore we don't hurt. I hurt everyday because I can never have the life I would have wanted.

Cerebral Palsy is lifelong for me. It won't get better. As I age I will deteriorate further, and I constantly (like those new to this), have to find ways to do things, ways to cope and ways to accept my life. You don't just wake up and say 'everything is easy now', 'I'm fine with it'. It doesn't work that way.

Everyone is worth listening to. It doesn't matter if this happened to you last week or at thirty years ago! We've all got to accept something we didn't choose. We should be helping each other


Image: 'Pinterest'


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