From Kingsmeadow to Westminster & thoughts on me cold!

January 5, 2015 2 comments


Tomorrow, proud, resilient Disabled People head back to Westminster to continue the fight to #SaveILF . This video has nearly 1000 views, please share & see if we can get it to 1000 to show support for tomorrows lobby of parliament & to let more people know whats happening.  You can make the difference by simply sharing it in your face-tube–tweetspace network! Thanks to everyone who has or does, you will become an honourary (uk spelling has a ‘u’ yeh?) Rockinpaddy sausage xx

And finally my thoughts on having the flu!

Blog withdrawal – where next?

January 2, 2015 1 comment

It was both strange but yet somehow relieving not to have had to have blogged yesterday.  To not to have had to think of an adequate image to reflect my experience or feeling of the day as I had done for all of 2014.  This has led me to think where next for my blog?

I’ve been watching the lovely Stephen Frys “Planet Word” on language and thinking, I’d like to write better to be able to express the nuances of what I mean clearer.  I’d like to articulate better the things important to me and to explain these things better.  My blog has always been about exploring the ramblings and tangents in thoughts, having the odd good old rant and testing out my funny little mind ready for day to day use, unpacking my humour and my experiences.  Sometimes they might be interesting to others, but I am under no illusion that on the whole they are not.

I received a letter the day before Christmas Eve about the transfer of my ILF to my local authority and I spent a whole night (a few nights later) thinking what is Independent Living to me, What is it about the ILF I want to hold on to?  I then thought surely I know that already, Ive been fighting to save it for the last 3/4 years? And yes I do know in terms of the big broad brushstrokes of meaning but whilst tossing around in my bed, trying not to wake anyone else up, I started to think, we are up a creek and we need to grab hold of the paddle.

In all the panic we can’t get lost in the subtle/tricky changes that happen with little notice (like the way a few years ago the ILF website suddenly had a dwp logo on it and suddenly ILf was in our public conscience about work or benefits, cuts, haves and have nots…that slippery slope.  Another example was how in 2010 ilf was subtly closed to new applicants and everyone from then on was ok in “the mainstream” care system, even the words used to express Independent Living have been totally re-written by government & even my own local authority in a vocabulary not reflected or owned in our experience and past battles for this right to life), the way in which very subtle shifts in language or image helps people forget that we’ve already had this fight to get where we are.

Stephen Fry’s programme has a brilliant bit in it about how politicians use all those bland euphomisms and jargon to hide from what they really mean and to be able to disown what they say and more importantly disown any negative consequences later. I need to express and clarify ILF  in order to be clear about what I’m asking for in terms of choice and control.  It’s an analysis I feel is unfair to do in some ways as it over complicates a very basic set of things that on a day to day basis most wouldn’t even realise or think, having choice and control to live, be creative and just get on with it all. Its interesting how they use this dodging, disowning language and yet my learning from the High Courts and my philosophy of education studies is how important and critical language is to meaning and the self our humanity. Importance is in both words and actions

Still, to articulate the detail of what I need in terms of what the ILF has achieved for my life, is to be better able to defend and fight for what we have and to be able to show how it is being impacted or (hopefully this won’t happen) but taken away.  I need to ensure I can carry on with my life as I have done, dealing with anything life brings our way as it were.

In this blog I already feel I’ve written to much to express what I thought were simple things in my mind.  You see, this is what I mean by getting better at it all means.  I’m sure I could have said all the above with less words and in a better way?

So I’m thinking….A few less blogs than last year, but spending more time trying to get better at expressing and clarifying my ramblings.  This will continue to include slang, tangents and reference to abstract pictures and you sausages.

I’ve said a few times over the past year, I never applied for the job of campaigner, Independent living isn’t the real driver in my life and passions, that disability is proudly part of my identity as a human being but it isn’t the only thing that defines me. So I want to explore this too, what do I mean when I say stuff about Independent Living, or that the social model of disability is important to me because etc…how do these things relate not just to disability but to music or to creativity or the guy who works down the chip shop who swears he’s Justin Bieber….or Elvis.

Anyway to help this blog get out of the bog it’s become….a flufffy kitten, apparently much more popular on the web.  All together sausages……Ah



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Day 370: Last post of 2014!

December 31, 2014 2 comments

Yes I did it, a post a day for the whole year! Admittedly there are 370 days in my year but I needed a few extra days per week to fit everything in. It’s been a brilliant year really, another successful UK tour, Gigs all over including a great trip to Germany, Daisy Fest, over to Ireland and of course locally. I’ve been fortunate to have had great media coverage, nationally, internationally in press, on tv, web (thanks Sammy S) and radio.  I’ve worked with some great organisations: Orpheus, Drake Music, Daisy, MertonCIL,  Go4M, Inclusion London, DPAC, Transport for All, New Wolsey Theatre, The Blockheads, Birmingham Rep, Yorkshire Playhouse, Nottingham Playhouse, Epsom Phab, London Symphony Orchestra, UK Youth, Lifetrain, Goldsmiths & of course Graeae to name just a few.

Its no lie to say the last month of the year has been very hard with the loss of our High Court case to protect our ability to live independent lives with the support of The Independent Living Fund.  Time and options are running out and the legal route is now a very narrow option and a bit last ditch as it will only occur as changes happen.

Its a hard lesson to realise even when we fight for laws to protect us, they can easily fail and not protect us at all.  Only made worse by a government & ALL main party’s knowing the closure of the ILF is likely to have a detrimental impact, they are ALL standing aside and letting it happen. Well, we fight on stronger in the knowledge that what we are fighting for a just reason (remember we did win in court too), not just for a few individuals but for future young disabled people who should have a right to live independent lives able to reach their full potential. If its about economic sense, then the figures don’t take much working out, an average/person of £360/week ILF (plus being able to work, contribute, employ others, who also pay taxes etc etc) against a carehome bill of -£2000/week, %3 administration v %16 administration bring it on.  This is about Human Rights my friends, the declaration signed by the UK says so, unfortunately our government haven’t enshrined them in UK law so we haven’t got a legal leg here, but there is a fight to stand for and it starts on January 6th in the Houses of Parliament, see you there.

The best bit of the year is in the hardest part, family & friends support and love has given me so much strength, I’m very lucky to have half of it.  Love ya sausages. Thank you

Back to my first post, that green globule?


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Day 369: Lost against myself at snooker

December 31, 2014 Leave a comment

Thinking about Audreys documentary last night, all speakers n gear back in cupboard (thanks Dave n Dave), phone chats and settle down to a bit of Elvy!


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Day 368: Mrs Brown n a bita Frank!

December 29, 2014 Leave a comment

Getting into the swing of this relaxing malarkey!


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Day 367: Be rude not to pop in eh, as it’s still Christmas.

December 29, 2014 Leave a comment


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Day 366: So it’s Saturday, yeh?

December 27, 2014 Leave a comment



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