Pie n Mash Podcast

Episode 1.

Day 280+: Political Dissappointment.

 

I’m posting this extra blog (sorry it’s a long one), don’t stop me…. essentially its been bugging me, I’m a little  frustrated/disappointed. Why vote for an MP too busy to respond, address my concerns? Maybe blogging will get someones response sausages?

I try and do the right thing, give the benefit of the doubt, be open to the fact that there will be different views and opinions. But your my local MP? I’m doing what I’m meant to be doing, asking you to hear my concerns and tell me if you’ll back them, support them, do something about them in Parliament?  That’s why we vote? This blog could be called “Disillusioned.com” and don’t get me wrong, I love shouting at my tellybox-screen when Question Time comes on .

My passion for Disability Equality and in particular the right to live an independent life & even more specifically The battle to Save The Independent Living Fund (#SaveILF) goes across all political party’s.

I have written & spoken in person with my local MP, Siobhain McDonagh about these matters, always in the hope she would support these important matters.  Back in May I met her in my local pub where we spoke about the Early Days Motion about Saving the ILF and although Siobhain expressed some reservations about whether the EDM would help, she said,  and not under any pressure, that she would sign it (me lully mate, Steve even wrote on my Facebook that he heard the whole thing).

To the best of my ability in checking this up through public records….she has not signed it, but as I’ve said at the top, I give the benefit of the doubt, hoping upon hope that this issue will get picked up in some other way, even though I’m running out of them now too. I did send her a follow up email, as with the European elections, I’m sure she was busy.  Apart from an automated reply, I didn’t hear anything back.

Past letters around the ILF have had responses but generally they have been the ’round robin’ type, covering letter with attached copies of round robin ministerial responses.  The type that really don’t get you anywhere in dealing with the matter.  You know, no critical unpicking of the content with an intent leading to a bit of action on the matters arising.

I’m not bombarding the poor MP with lots of trivial/unreasonable stuff, but with things I believe are important to me, but also important in our community. They are about issues of Social Justice and yes…..Human Rights.   I was grateful when Siobhain intervened when SERCO provided poor services in the maintenance of my chair and we got a result.  So I’m left confused and disappointment when there is no dialogue on this really important matter. I’m a local person, and lets face it I’ve been fortunate to get a fair bit of media coverage nationally on the matter, BBC radio & TV, The Guardian, New Statesman, The Stage, interviews with 15 local BBC stations live, one after the other.

There have been a few events in The House of Commons to help MPs understand the issues and get there support to raise, debate and vote on these issues.  I have spoken at one of these events in “The House” (https://rockinpaddy.wordpress.com/2013/11/26/from-the-royal-courts-of-justice-to-the-house-of-commons-rockinpaddy-plays-on-through-it-all/ )  back in November. I wrote again to invite my MP to take interest.  I was also not the only person to invite her from Merton.  I even understand that she might not have been able to attend as she could have been busy.  The disappointment is in the lack of response, interest or even dialogue as to why she might be opposed to it.

With the next General Election just around the corner, I, and many disabled & non disabled colleagues/allies WILL be making #SaveILF and issues of Disability Rights a manifesto/campaigning issue…….It will  =  votes………..votes for those who stand up for what is important to us, reflect our issues and concerns.

Below is the last invite I sent to my MP to an ILF event in September. If she couldn’t get there then my door was open to at least come n have a cuppa and a chat…….Still no response. I wasn’t the only person to invite her, so even if she didn’t get my email, hopefully she will have got one of the others? I don’t know if my MP got to the event, found it helpful, didn’t like the biscuits, admired the carpet, spoke up in favour of Saving The ILF etc?………

Maybe I should stand for Independence as an Independent………but don’t worry I couldn’t stand being called a politician, I would much rather get on singing and trying to do good things in my community that hopefully make a real difference to peoples lives. Ive never chosen the job title Activist or Campaigner, I’m trying to get on doing what I love best.

Dear Siobhain,

I hope this email finds you well. I really hope you might be able to attend this drop in event at the House of Commons.

As you know I’m deeply involved with the campaign to save The Independent Living Fund. I work full time in arts & education as an artist & facilitator, this includes helping the brilliant award winning Merton Centre for Independent Living which works in your constituency.  You might have even seen coverage of me last week on BBC news at 6, BBC news 24 or on radio 4 & 5, which featured some of my work,  music career and how ILF gives me an essential quality of life to be able to do all these things.

I am grateful that in the past you have written on my behalf on this matter to ask questions to the Ministers involved, but I now feel we are getting to a very serious and critical point as the ILF will close in under a year. Although I hope our high court case will once again be successful in reversing the decision or at least will delay things until someone in leadership actually listens to disabled people and changes this detrimental decision, which has been proven that it be detrimental on the lives of some (the most severely) Disabled People which takes us back 30 years in terms of equality  [see Jenny Morris’s recent report: https://theindependentlivingdebate.files.wordpress.com/2014/07/independentlivingstrategy-a-review-of-progress-sreen-1.pdf ].

The Event Details:
– with BBC Silent Witness actress Liz Carr

2 September 2014; 2 – 4pm; House of Commons Committee Room 19

This drop in session will be a chance for MPs to find out more about the closure of the ILF which currently supports nearly 18,000 disabled people with the highest support needs to live independently in the community, to contribute to society in employment, education, volunteering, as family members, friends and as members of our communities and to build the local economy through employing teams of Personal Assistants.

The surgery will be an opportunity to ask questions and to speak to Liz who has been enabled, through support from the ILF, to progress an acting career that has spanned stand-up comedy, presenting for BBC and primetime television.

Also in attendance to answer your questions will be an ILF staff representative and a disabled person who missed out on the ILF through its closure to new applicants in 2010 and whose experiences reflect those of many other disabled people now excluded from participating in areas of life that non-disabled people take for granted.

The Drop in is being organized by PCS Union, Disabled People Against Cuts and Inclusion London.

For more information contact ellen.clifford@inclusionlondon.co.uk orNatasha@pcs.org.uk

I would also like to invite you to visit me at my home to chat about why this is all so important. I would like to include an invite to MertonCIL’s manager to join us, as I think she would help show the reality of the local picture.

We go back to the High Courts on 22nd & 23rd of October and as we get closer to the date of ILF closure LB Merton are still undecided as to what they will do with transition funds, for example if they will ring fence it.  As a professional artist and someone who lives a fulfilling, busy life, in order to do these things, I need to plan ahead, and yet, its almost September; 9 months before closure and I’m being asked to accept a new system/something that has not been fully thought through or decided upon & that evidence suggests is a retrograde step.  I’m being asked to allow this to happen and give up a system that has enabled me to live independently in my own home without intervention (other than monitoring its use) or crisis for the past 20 + years.

The campaign is growing in strength and also in it’s public profile. Many MPs are in agreement with this campaign. This is a real election issue which I feel The Labour Party really need to get behind in order to show they are offering something different in making this a manifesto issue. This will only happen if those in positions such as yours, speak out about it, however this is more than party politics, this is very clearly about Human Rights and that is why I would value your involvement & support.

I’d value your involvement in fighting for me and other disabled peoples right to live an Independent Life.  When we last met in The Morden Brook I know you had concerns about signing the EDM and I see you haven’t signed it as yet. I need a local MP who I feel will fight for issues that matter to me (and many others, this affects families, business, our community, the economy) and I’d like to have the confidence in knowing that my MP is fighting for these critical issues that have a very direct, real impact on my/our day to day lives.

For your interest:
This is a music video I made “The Battle of Whitehall” reflecting the growing campaign to #SaveILF: https://www.youtube.com/watch?v=9pLn3RfY1Hs&list=UUx6io1Pq7e6PCDPjLMHFziw
This is a clip of me singing Ian Dury’s ’Spasticus Autisticus’ at The London 2012 Paralympic Opening Ceremony: https://www.youtube.com/watch?v=RI9AI6VAimY
This is a link to The New Statesman interview done whilst on a UK Tour in April: http://www.newstatesman.com/politics/2014/03/back-basics-independent-living-fund
The BBC news link I have sent to you via Facebook as I couldn’t get a link here: I’m not clever enough to master all that can be done on the web!
I hope you find this all helpful.  Please let me know if you can attend the event or when you would be able to visit me to talk further about Saving The Independent Living Fund, its principles and purposes that local authorities are unlikely to be able to deliver with the same flexibility, experience and expertise without it becoming a post code lottery of independent living.

Kindest regards,

I’m not posting this to say “look how bad my MP is” I’m posting it as hard evidence that we are not being “actively” listened to. More importantly that what we are saying is not being reflected or acted upon within the decision making process and in the seats of power (and that seats not my Phoenix Electric, trust me).  This is really important stuff for thousands, perhaps millions of us and somethings got to change & change starts within. Here we come!

There will be a vigil outside the court at 12.30pm on 22nd October.

Hardest Hit coverage on Channel 4

http://bcove.me/kidfu7z7

Election Fatigue & other matters

My last few blogs have been of the audio variety, so I thought it was about time I put pencil end to keyboard and mulled over the last few weeks or so.

I had a great inspiring trip with a few close friends (56) up to our favourite outdoor education centre, Bendrigg Lodge. The energy, talents and friendship the young people share on this trip is always inspiring and this trip was no exception.

You may have guessed from my twitter, facebook or diary antics, that since December I’ve been getting more & more involved with the life & times of Ian Dury and in particular the brilliant Theatre Company Graeae. I’ve been singing as part of the development stage of there latest production “Reasons To Be Cheerful”. Written by Paul Sirett, it’s a funny, gritty, sometimes hard & sad story intertwinned around the songs of Ian Dury. I think this description of the show will be better articulated as I get to know the story once it’s finished it’s 100th or more re-write. I’ve only met Paul a handful of times but i love watching him, watching us, wondering what his next thought is. What might he be thinking as a result of a flippent rehearsal comment or action that might end up in the next script, or not? We are in the safe and genius hands of Jenny Sealy who I love being around & learning from. She is a very experienced Artistic Director and great fun to be around. Robert Hyman is our MDand he can sure hit them keys.

You’ll have to come and see!

Anyway on Saturday, it was confirmed that I’m in it, doing the vocal. I’m over the moon, and completely over whelmed by this new opportunity. It feels like I’m punching well over my weight on this one, even though others tell me different and in my heart I know if I work hard and focus I might just get close to living the total dream!

I’ve sung all my life, never brilliantly, but always tried entertainingly. I live & love music and have been lucky to make a living from it in different ways and to do this is a boyhood dream that has stayed with me through my life.

It’s the people around me who are so skilled and talented that are the icing on the cake, you should see them, they are top banana & I’m going on the journey with them!!

I realise, I’ve not actually mentioned the elections, well why should I?? None of them have said much about the things that matter to me, Inclusion, rights, social justice, valuing informal learning & young disabled & non disabled people growing, learning & playing together….except yesterday when the bias of all parties towards segregated education was shown to still be in existence!

And Mr Steen MP, I’m giving up on ever hearing back from you about your bad parking habits. With any luck he’s going to get kicked out on 6th May and we’ll never know about his parking antics or expenses behaviours ever again. With the greatest of respects, thanks for showing you never did actually want to hear from Disabled People, I hope you are very happy polishing yer pearls & may you never need a parking space in SW London!

Love

JK

United

Today was our local Go Forum, a small but growing group of local disabled people fighting for local issues that affect disabled peoples lives. It was one of the best I’ve been to, because there was a sense that within the general mess and struggles we are trying to improve there was a sense of coming together.

There are many different views on the group, which is probably it’s strength & if honest there has been some tensions on the group, this is mainly in the context of discussions of major cutbacks in services in Merton and the best way forward. Well although there are still differences there was a general feeling that we stand together so that all disabled peoples needs are considered. New things are not a choice if they are at the expense of other things being taken away.

If something needs changing then change should be done by working together to improve things. People need to be involved and supported in being the author of their own changes.

We are concerned about these local issues because they have a very real impact on all people, not just disabled people, but their families, loved ones, children, older people, working people, disadvantaged and excluded people and the comfortable, regular folk. It’s about all of us.

I genuinely feel that those we are working with within the local authority also do care & they are trying to do a difficult job in which they very rarely get praised for. I think & hope they are trying to get it right (or do I just see the good side of everyone?), we need to begin to build a dialogue of trust in each other. They need to trust that we can make the right decisions if given the right tools and we need to start to trust that they will not take the process away from us and yet again dis empower us back t the status quo. The reality is we’re not going back to those dark days, we’ll just move onwards.

My fear is that cabinet, the group with the power to decide only see figures, a balance sheet and the most in vogue initiative that will create good headlines. I have met a few good councillors to discuss the future of a CIL, and I can only hope that those that genuinely care about people out number those who have whatever other motives to balance the figures.

Disabled people can and do contribute to our society but can only do it if our needs are adequately met, actually fully met, adequate isn’t enough. Once fully met we play a full active part in our community, we buy things, we work, we pay taxes, council tax, just the same as everyone else. The current discussions around cut-backs have very little to do with a genuine transformation programme. Transformation is generally a positive process where you start at one place and through learning and understanding, you move to a better place, transformation. The cut backs are about very basic things like getting around from a to b, having support for our loved ones, being able to meet friends that we want to have by choice, having a purpose to life.

I agree that services and provisions may need to change in terms of transformation, but that is different from creating cut backs to essential services and provisions. If people are genuine about transformation, then enter into a process of change, the new tag is co-producing, us together, with us having more control over the things that affect us, as a result we change, that change will also mean you need to change too!

By the way I still haven’t heard from MP Mr Steen about his parking habits, sadly it is now obvious that when he said he was happy to hear from disabled people he obviously didn’t and just needed the publicity. (thankfully he isn’t an MP in Merton).

Sorry It’s Been So Long

My first update is to say that I haven’t had any response from Mr Steen MP to my email sent on 1st June, so it’s obvious that he isn’t interested in apologising for his actions but in just getting a few column inches to promote himself. Obviously I’ve sent him an email asking why he hasn’t responded after asking people to contact him. A publicity stunt perhaps?

My final dissertation gets handed in next Monday & I’ve had an amazing three year journey. I feel like I have learnt about some new principles that will be important to my future practices, primarily around the importance of Autonomy, clarity around equality and the role of Social Justice & Haman Rights. Also the importance of participation in democracy, so nothing small or easy but all important.

My next journey, seems to be taking me towards strengthening my understanding of research methods and a focus on ‘building community’….oh yeh, and how to survive a night out with the lads as my alcohol consumption has definitely decreased!

My last three years has developed my understanding around philosophy and the use of philosophy to clarify a concept such as equality or the social model so that it can withstand the rigors of challenge and debate, academic or otherwise.

Philosophy & theory are important but the last month has also re-enforced my own belief in the importance between theory & practice and in how they underpin or support each other. Why, because I’ve listened and seen at first hand that disabled people are still experiencing discrimination and struggles on a daily basis. More of this in my next entry.

To catch up, I’m going to make a few seperate entries as in one it would be too long and boring to read (probably!) and then you can read as much or as little as you wish. Oh yes, I’ve also been involved in a national launch of our resource pack “So What Is Inclusion”, (an ideal stocking filler for Christmas, easter present or any celebration), DJ’d 2 weddings, been featured on a national podcast and also a spread in a Nigerian Disability Issues magazine, been quoted in Young People Now and finally had my hair cut.

Be Lucky,

JK