I’m feeling quite tired as I often do after a day in London. In the morning I attended a policy group meeting at the Neurological Alliance (an umbrella that campaigns for a number of charities for people with neurological conditions, Tourette’s Action is a member). There’s nothing much to report on the policy front as August usually is a very slow month politically as it recess in Westminster all I’m currently working on the recent report about Incapacity Benefit claimants transferring over to ESA and scratching my head trying to think of some Lords to get in touch with about both the NHS reforms and the Welfare reform bill. At the moment Dame Tanni Grey Thompson is collecting people’s experiences of claiming ESA ready for the Welfare Reform Bill’s up-coming reading in the House of Lords next month. blacktrianglecampaign.org/2... myself and my cousin have been compiling articles and experiences with ESA and ATOS on Facebook and I would like to get together a report of some sort for her detailing ticcer experiences of ESA. facebook.com/pages/The-ATOS...
Along with trips to London naturally I have those ticcy experiences that many of us experience on a daily basis, especially on public transport. Apart from the often strong desire to jump in front of tube trains there is of course our favourite – those who stare, I encountered the classic starer yesterday on the train from Coventry. So, I get on the train and after a game of musical chairs, matching the traveller to the correct seat I make myself comfortable in my aisle seat, and there he is facing me just a couple of rows along. I rummage through my bag (whilst ticcing, naturally, clap, clap, expletive, gerbils) and decide which I should read first, The Guardian, Private Eye or Metro, eannie, meanie, mynie, mo. I opt for The Metro (it’s early) and he’s still staring. I ignore him, read and hide from him, whilst ticcing away behind my free “news” paper and listening to music, I’m quite engrossed in the music as I have been listening to quite a bit of post-punk music, listening to Magazine, (a band that at this point I should have listened to years ago) and re-visiting Wire, quite an influential band. I turn the page and he’s still staring. After I finish the Metro I put it aside for something more stimulating and notice that he’s still staring, this is annoying me now and I’m feeling beyond uncomfortable, in fact I’m feeling really annoyed verging on the worried, I’m beginning to feel that this journey isn’t going to go much further than Rugby where the grey-shirted stary man will get ejected. I read the Guardian, we pass through Rugby (thank goodness I’m still on the train) and he still stares, I really can’t be putting up with this anymore, this doesn’t happen often but out comes one of Tourettes Action’s little fact cards – the ones that come with the Identic card. He reads it, he looks down embarrassed. Good, the card has done its job; I can now carry on without the stary man drilling holes in me with his eyes.
When ever I’m standing on the platform of a tube station certain images come into my head, apart from the image of my throwing myself down onto the rails amongst the scuttling rats I remember a book that I had as child, it was one of my favourite books “Trouble for Trumpets” amazon.co.uk/Trouble-Trumpe... and was full of the most intricate fantastical illustrations depicting the Trumpets living their lives. (See picture) Along with this book I had other favourites, this one survives along with Frank and Polly Muir’s Big Dipper amazon.co.uk/Frank-Polly-Mu... , unfortunately my other favourite Dr Seuss’s “Sleep Book” has disappeared, but I did acquire a couple of years ago “The Mighty Book of Boosh” which is essentially an adult combination of all three which made me laugh out loud. creativereview.co.uk/cr-blo...
