Eres me video, you might have seen it on twitterbooktube!

April 12, 2015 Leave a comment
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Off to the UN, this battle is far from over!

March 25, 2015 1 comment

After a day in the House of Commons & Lords, it feels right to share this press release from Inclusion London which we were happy to pass over to those I met today….please share.  I was honoured to help break the news along with others fighting so hard in the #SaveILF campaign:

EMBARGOED until 00.01 Wednesday 25/03/2015

UK Disabled people appeal to the UN over Independent Living fund closure

A complaint to the United Nations was today launched on behalf of disabled people in the UK whose rights have been breached by the closure of the Independent Living Fund (ILF). The ILF, which is the subject of an on-going and desperate battle between disabled people and the Department for Work and Pensions (1), is high on the priority list for disabled people deciding how to vote at the forthcoming election. The complaint brought by Inclusion London (2) on behalf of two disabled women, Nicky Baker and Dr Melanie Wilson Jones, alleges that the government has violated Articles 17, 19, 20, 30 and 31 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), ratified by the UK in 2009 (3).

The Independent Living Fund was set up in 1988 to support disabled people with high support needs to live in the community when the alternative was residential care. Since then it has helped thousands to live active and full lives, contributing to their communities and participating in education, employment and volunteering, family and social life. It is an effective way to provide support with both low cost overheads and extremely high user satisfaction rates (4).

On 13 December 2010 without any consultation or impact assessment, it was announced that the ILF would be closed permanently to new applicants. A ministerial statement was made referring to “informal consultation with disability organisations” but there is no record of this consultation (5). Since then, disabled people who missed out on the Fund have been left without the support they need to take part in day to day life and disabled people’s life chances have dramatically fallen. Meanwhile the government has failed to monitor the impact of the closure.

Nicky Baker, age 30, is a qualified auditor working within a disabled people’s organisation as well as studying part time for a degree. Although eligible for support from the ILF, the Fund was closed the day after she telephoned for an application form.  The social care package she receives from her Local Authority does not provide the support she needs to live an independent life, for example to go on dates with her boyfriend without having her parents there or to take part in sufficient training for the high level of powerchair football she reached.

Dr Melanie Wilson Jones received a substantial amount of support including from the ILF after sustaining a brain injury. She made such progress that her needs decreased and thus her support was reduced. However following a road traffic accident in 2011 she sustained a further brain injury requiring someone to be with her constantly. Now unable to get support from the ILF, she is reliant on her husband who works full time and her 16 year old daughter to make up the extra hours of support she needs for evenings and weekends.

Tracey Lazard, CEO of Inclusion London, who authored the complaint said, “The closure of the Independent Living Fund signals the end of independent living for disabled people. It took many years for disabled people to fight their way out of the institutions and to have the same chances as anyone else to live in the community alongside family and friends.  At the current time Local Authorities are simply not able to provide the level of social care support required to uphold disabled people’s fundamental human rights”.

Sophie Partridge, a current ILF recipient, said: “The ILF has played a huge part in supporting me to have equal access to an independent adult life and a level playing field alongside non-disabled people. Without the ILF being re-opened to new applicants, I worry that young disabled people will never get the same life chances as I have had.”

Solicitor Louise Whitfield, from law firm Deighton Pearce Glynn, who is representing the complainants said: “From a legal perspective, I cannot see how the UK Government can justify closing the ILF to new applicants with no consultation or consideration of the rights protected under the UN Convention.  Under Article 19, those rights include the fundamental right to independent living which has clearly been breached by this decision and I hope that the UN Committee takes appropriate action to recognise these very significant breaches”.

For more information or to speak to either the complainants or other disabled people affected by the closure of the ILF contact: or call 07505144371.

Notes for editors:
1)         The future of the ILF has been the subject of two legal challenges: the first was won by disabled claimants at the Court of Appeal in November 2013 and the second was lost in the High Court in December 2014. There have been continued protests and direct actions led by disabled people and their supporters since 2010, including in June 2014 the attempted occupation of the grounds of Westminster Abbey.

2)         Inclusion London is a pan impairment pan London Deaf and Disabled People’s Organisation (DDPO) which provides policy, campaignjing and capaqcity building support for London DDPOs. Inclusion London promotes disability equality and has been working with the disabled people led campaign Disabled People Against cuts to support ILF recipients in the campaign to keep the ILF open.

3)         The UK is signed up to the UNCRPD Optional Protocol. This means that individuals can take complaints to the UN disability committee for breach of the UNCRPD if all domestic avenues have been exhausted. If the committee find the complaint admissible, they will investigate. and produce a set of recommendations for the State in question. One previous complaint was made to the UN disability committee but found inadmissible as the incidents in question which related to employment discrimination occurred before the UK ratified the convention. For more information about the UNCRPD:
For more information about previous uses of the Optional Protocol:

4)         2% overhead costs compared to 16% for Local Authorities
ILF annual report 2013-14 reported 97% user outcome satisfaction:


Best wishes,
Ellen Clifford
Campaigns and Communications Officer
Inclusion London

Visit for information on free training and events for London’s disability sector run by Inclusion London and Transport for All.

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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