I am very amused by the way someone can e-mail asking you if some things they've been helping to arrange for you have been done and then you answer all but one which you've been chasing and chasing and nothing doing they then e-mail you back and say "well you obviously don't need my help anymore, best of luck for the future then, bye."
I didn't specifically state that I wanted her to chase this one thing BUT it falls under the description of what she asked and, well, she could have at least offered to call them. Plus it almost strikes me as she read it completely differently to how I wrote it, know what I mean?
I suspect it's a bit like when I ring up and just say "I'm Emma and I'm calling..." I get one reaction from people and when I call and say "I'm calling on behalf of Mr. So and So, my name's Emma and I'm an adviser from such and such CAB" I get a totally different answer... I ask and they say they know and it will be done, if she called and asked they'd probably say a timescale for the doing.
It's one of those things that makes me want to rant and rave about the system and the lack of ongoing support for adults with CP in this country, to talk about how the medical profession are all about the kids with CP and once you turn 18 its like your CP should just *poof!* as if by magic it's gone.
Sure, she gave me the number to contact if I need to speak with someone from her department again... but that doesnt make it as easy as having someone who knows you. I doubt I'm going to need her support on a continuing basis from now on but I am always going to need that sort of support at times and it would nice to not have to start from scratch (I hate giving medical history again and again and again). Part of it though stems from the fact that I can do it but I know people who couldn't and that makes it a more bitter of a pill to swallow.
But then being at CAB has taught me a hell of a lot more about limited resources and I realise that maybe this is the way to do it. Only in this case though, there still are a lot (too many!) of instances in support which would be useful to me no longer being available to me now I'm an adult, of being told I cope too well or having to wait 8 months or...
We did benefits training at work last year and someone asked how the system for benefit administration could be improved. My cynical answer was to scrap the lot and start again. They thought I was joking, but I was deadly serious. And that's how I feel about disability support too.
It's things like this that make the idea of true and total anarchy even more appealing. Only that woudln't make it right either.
And that's the sad truth. With the state of the world and specifically awareness as it is now we can never overcome the inherent disablism in the "systems" designed to help us.
It can be done, I know it can. I just pray that it's something I see in my lifetime.