When Will We Rise Up?

“Rise up Evie Smith”, I yell.

It’s common place to be asked to give feedback on an experience when you purchase  or participate in something theses days. With my training background, I know important and useful this is to how I can improve and redesign things.  But hat about when you feel the feedback is just for a tick box exercise that will bring little or nothing to change the bigger picture.

I recently had this offer/dilemma to give feedback on my experience of going through my Personal Independence Payments (PIP) Assessment. To be honest this blog is  already about a thousand words too long, sorry sausages, bare with me:……

It’s important to put my little act of resistance in context.  That is the context of this governments ever increasing erosion of our rights and our independence. I (and hopefully we?) know and see this erosion all around us. All these changes are a systematic wrong to fit an ideology of greed and selfishness. It smells, feels and looks wrong. Even if you disagree and think the gornment is great (???) you must sense some of us are experiencing something that isn’t quite right?

Harsh? Unfair? You may say I’m being a bit bias? Well, if that is a bias toward the side of equality, justice, respect & dignity, then yep. But then I realise why the bias is ther. My rational (not bias) response as I reflect, is directly as I experience the Closure of the ILF (Independent Living Fund), the tightening bureaucratic restrictions and changes to Access to Work. Then outside my direct experience, but with my loved ones, my friends, their families, other disabled people being put through care cuts, benefit cuts, the bedroom tax, Working Capability Assessments and Universal Credit hasn’t even got half an evil claw in yet. The whole agenda needs ripping up, re-directing and far more urgently than anything Brexit could throw up.

To put it straight, I don’t want a new tweaked central Care system linked to health. I want to be able to live an independent life with choice and control where I can contribute and participate in the world around me…as an equal.  To do that I need support…don’t we all!

All in the name of Austerity, a strong economy and to aid the rhetoric of ensuring as a great country we look after the most vulnerable/those with greatest need. And yet it’s ok to have a limitless pot to piss it up the Brexit wall? Well you only have to google any of the above or listen to the news to know these actions are at the least having the biggest and most detrimental impact on our lives.

I panicked that my response might be my age, “moany an old bloke” period of life.  Then I pinch myself and realise it actually is really happening.

As a small time campaigner/fighter (there are many greats far more effective than I) of injustice/discrimination  theres always a sense of “why aren’t more people rising up”, how can we resist, be helpfully non compliant, not participate in this game we are being forced to play. I want to play a game with fair rules, agreed with negotiation and agreement. A game I can play with fairness and equality, one that I can participate and contribute too.

So back to the plot, my invitation to participate in a focus group looking at my experience of PIP for £50. In the context of all the above and along with the short notice, lack of financial recognition of my professional time, PA costs to be there and the feeling that I wouldn’t be able to get across half of how bad the whole experience was in terms of access, bureaucracy and my self esteem/confidence, I decided to decline, but tell them why and was happy to have it on record & is why I am sharing it in this blog.

My anger/frustration/beliefs wasn’t with the research company, the guy was nice enough. My need to adequately respond to this feedback was bigger than the opportunity to be complicite in ticking the DWP consultation box. It was very much about my anger/frustration/etc at our governments policies & actions. Heres me letter, I’ve removed the researchers name.

Subject: Re: Confirmation of group discussion about your experiences of completing the Capability for Work questionnaire [6060]
Dear xx,

After serious consideration, I have decided I cannot participate in this piece of research/feedback to DWP.

The whole of my experience was so fundamentally negative, inaccessible and difficult, that I believe the whole pip system needs drastic change to meet & reflect the real needs and lived experience of Disabled People.

If the dwp truly understood the practice of real co-production this would be a positive start that might change the culture towards Disability equality and supporting Disabled People to live independent lives.

Although I do appreciate the token of £25 for my time, as a disabled person this amount doesn’t reflect the true cost of my time & support needed to attend.  It’s a very low rate as an incentive given the costs to attend and perhaps current research rates.  In short, it reflects part of the problem in the DWP not recognising the true additional cost of disability, let alone as an ‘incentive/gift’.

I would be happy for you to use this as anonymous evidence or to chat further if there was a real commitment to change to improve the lives of Disabled People particularly in the current climate and context of policy impacting on our lives (closure of the Independent Living Fund, restrictions to Access To Work).

Thank you for contacting me, I am of course happy should you need to contact me for any clarification.

We must join together, united & rise up, be non compliant wherever we can to inequality and unfairness and continue resilient and resolute in seeking inclusion, equality & justice together as disabled and non disabled contemporaries.

Right, cup of tea Sausages! xx

 

Day 300: Tea, day 2 in Court & Cake

The perfect combination, just need the rock n roll and I’m made!

Second day in court. Its been a massively important day and our case has lasted longer than any one thought. I guess it proves, together we are stronger! I was in court for all 4 sessions so have heard all apart from the first part which was held in privacy and was related to a confidentiality matter.

The case is complex and the judge is giving both sides the opportunity to submit any supporting papers as part of evidence discussed in last few days, then she will go away and consider her decision.  the case is finely balanced and today we honestly don’t know which way it will go.  It is likely the judge will make some decisions in the context of the law tomorrow (Friday..ruling on un-controversial parts etc), but we will not know these or the full outcome until she makes her full decision which includes the more controversial aspects of the case. We don’t know exactly when this will be but possibly 3 to 4 weeks, maybe longer.  The judge did say she understood the importance to us which is why she both wanted to carefully consider it all whilst making that decision as quick as soon as she could.

Today’s blog is just to say the fight goes on, we all know the legal battle is only one part of this campaign, its critical, but of itself it won’t save the ILF.  It can quash decisions if not made legally and for now that’s our legal position.  There is alsos the political, social, media levels to be fought and hopefully won.

In tomorrows blog (Friday, day 301, bundle 6, tab 3, paragraph 4) I’ll try and reflect on the detail as I see it.  There will be other reports and blogs that will shed  better light on the case, better than I, but I’ll try my best to highlight the mountains of information and understanding that Ive learnt in these past few days.

At lunchtime Ellen comes over to me “John, we have to go outside, someones brought tea and cake for us!”.  Areep from Kings College Vice President of the Student Union, just along the road from the High Courts had been following the #SaveILF hashtag and the union wanted to come and show solidarity by giving us tea n cake! This is only one example of all the brilliant support this campaign is getting.

On a personal level, I’m once again overwhelmed by the love and support given, you all know who you are.  Thank you xx

I’m knackered and in a bit of agony from not much sleep and all the going over long hours in me leccy, but hey ho, its a right laugh all this sausages!

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.

More than an observation

Some news headlines not made up by me, but sadly very real: Disabled children falling deeper into poverty (the very basics food and clothing); More news from bbc amongst others…the mental health system in crisis…last weeks news: concern over 15 minute ‘flying visit’ calls to provide support in peoples homes…….The week before: disabled people being excluded from their own graduation due to inaccessible ceremony venue…..disability hate crime on the increase but still not being recognised as a real statistic….media stories questioning if there really was a Paralympic legacy or has it fizzled out already, just one year later?

Over the past couple of months I’ve been involved in a number of disability movement events, either speaking, mcing, singing or a bit of all. I sense a real increase in lobbying, challenging, demonstrating going on over the past year. One of the most moving and shocking to be involved in was the 10kCuts event on Parliament Square. I’m still trying to make sense of how 10,000+ people can have died due to government actions, without a bigger public outcry or the news picking it up and asking the question how/why? Of course you will know that i have been a little involved in the Save The Independent Living Fund Campaign which has been back to the high courts and we await judgement, four to six weeks from now.

All these events have really happened, I’m not making them up, you can google, research, ask others and its all there. My blog isn’t really a comment about these events in particular, others are writing much better than i could about the injustice of all of the above. My blog is the observation that even though we have been battling for access, rights, inclusion and independent lives throughout our lives…things seem to be intensifying.

I’ve never felt that paranoia of the big brother state getting me, thats not to say I don’t feel we are oppressed or marginalised people, just that I always believe that right will prevail and change will happen slowly. But the intensification of lots of disability issues, the above is only a small sample of that, makes it hard to stay bright and chirpy about our oppression and discrimination…you know…we are stronger as a result of it, type stuff.

This blog really is about my genuine confusion as to why the government (and opposition parties) cant see there is a problem for disabled people living in the uk right now?

Whilst at University I learnt to try and write objectively based on research, evidence and reasoned argument based on those principles. Of course I/we all write and see things through our own set of values and beliefs, we all do. Im trying to write this as objectively to, im not making a judgement on individual facts or even saying it must be all made up. Its the observation that it is prevulant, being reported and more disabled people are becoming mobilised by what is happening.

So even if you accepted (and I don’t) that all the above was reported on the bbc, newspapers etc as a left wing or anti government bias, even if you take that away….objectively, independent bodies (BMA, BBC, governments own appointed research and reports, the justice system) you cannot deny things are happening negatively and theres a lot of it around! the disability movement (another discussion to be had) or organised collectives of disabled people are becoming active, court cases regarding disability issues are being brought forward which are of a critical nature about fundamental basic rights and they seem to be on the increasing. media reporting of issues around poverty, abuse, exclusion and discrimination is a regular (at least weekly, if not daily).

Yesterday I was working with my local cil. we’ve only been operational for less than a year and already we have a body of evidence, which we have not dug around for, it has come to us through peoples real experiences. Some of this evidence is horrendous and no individual would accept it in a civilised society where freedom, liberty, justice and dignity are meant to be corner stones…the cornerstones by which we are judged as a society.

I’ve held off writing about these things for a number of reasons. Firstly, there are many others writing much more eloquently than I about these issues. Secondly you who know me, know I’m a fighter but I’m also a lover, i protest through music and trying to be the change I want to be in myself, so i am always determined to be on the brighter side, glass half full type person and part of me doesn’t want to write about the negative things that I individually feel passionately about.

But the last few months have given me thoughts and experience and evidence of how serious my smile and fight really is. It is why we must become even stronger, together to continue the fight for what we believe in acceptance, equality and justice. I also know we need our issues to be recognised and supported much more widely than just within ourselves. These wrongs must be righted (is that a wrong word?) by many others so that we build allies and alliances disabled and non disabled people together and that as a society we all realise that disability issues are about how we all live and work together.

A final shocking but true thought/reality being suggested to a few……

Is it really acceptable to be told that instead of having support at night, you could wear a pad if you need the loo?

And yet those saying it go to work, fed, showered, in their smartest suits and dresses without even knowing or thinking how long that all takes them to get ready and out the door, or without considering how much tat time to get ready may cost in monetary terms to the hour…..i do…….down to the minute.

I’m so grateful to work and meet with so many amazing fighters, friendps, allies and people who don’t let any of the above stop them from getting on and making a difference. We are not going away, the fight will continue, not for us individually but for us all collectively. I will continue to sing & smile my way through at the ridiculousness of the wrongs, its what we do, be resourceful and creative. we cant allow wrongs to break the collective heart, so we have to be strong until we get further along the road to justice and equality.

We carry on sausages.

Archive audio blogs – last: The wheelchair saga!

My audio blogs are via the link above, click & it will take you too all my audio blogs with most recent at the top, plus older audio blogs too.

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).