Wednesday, 9 April 2014

Survival

Dark nights, alone, frightened.

No-one to come when you call. Bloody sheets, retching as just-cut muscles scream in discordant hell.

No one comes.

You exist not to move. Not to blink, not to breathe. They all rip through you in waves. Tubes tie you there in tangled vitality.

Survival. A real person in the room with you. Watching. The only person in the world. All there is to focus on. We're so surprised to meet. Learning about each other is a revelation.

It is all about hanging on. Somehow, minute by minute, hour by hour.

Always quiet, not dark but dim.

At last they come. Survival leans forward in his chair - will you make him leave?

You Force your eyes to focus first, through sheer force of will. (I must speak, I must explain.)

You test a sound, but Survival is smiling, nodding quietly in his chair.

"I need you."

(Tries again, not enough)

"I need you to stop this drug."

(Pauses. You feel yourself falling, far away, into yourself, but there's only one thing. One important thing you have to do. You know you can. If you could only remember how.)

".......allergic"

Then nothing. No survival, no opinion, no determination. Just nothing.

When you wake, survival has gone and a kind face says they saved you. You smile, falling gratefully back.

But the smile is because they're wrong. You saved you.

That's how we do it. That's what made me able to do it. That's why I can do this but not live the way others do. 

Because being dangerously, critically ill means that you will always, always find a way to get past Survival. 

Until you don't. As, one day, we all won't.





BEYOND THE BARRIERS - UPDATES

Firstly, soooooo sorry we had a Facebook hitch. Just too many health related balls in the air

We now have a Facebook page where you can share links you see joining the #BeyondBarriers debates, talk about ESA and Work Programme reform, and let people know what YOU think. Make your voice heard. Can you all be part of the team for a while and link to the site, ask for likes and share it around? Thank you

There are links all around the web discussing the Beyond the Barriers report and giving their first impressions. We're overwhelmed by the positivity and support from think-tanks to blogs, from Conservative MPs to Labour peers. From campaigners, still tweeting for all they are worth, hoping the public will hear and join them to charities.

Here are some new ones :

Catherine Hale, author of the Work Programme section of the report discusses it at Left Foot Forward 

http://www.leftfootforward.org/2014/04/until-esa-is-reformed-the-rights-won-by-generations-of-disability-campaigners-will-evaporate/

I start a debate at Progress 

http://www.progressonline.org.uk/2014/04/09/beyond-the-barriers/

Richard Excell at Touchstone Blog welcomes the report :

http://touchstoneblog.org.uk/2014/04/beyond-the-barriers-what-welfare-reform-looks-like-when-disabled-people-design-it/

False Economy share our press release

http://falseeconomy.org.uk/blog/new-report-offers-an-alternative-to-failing-atos-esa-tests-and-out-of-work

Claudia Wood at Demos writes an enormously thorough and supportive article 

http://www.demos.co.uk/blog/evidence-based-campaigning

Luke Akehurst at Labour List shares his own experiences of disability and makes Beyond the Barriers come alive

http://labourlist.org/2014/04/beyond-the-barriers-new-report-exposes-appalling-failures-of-atos/

I'm sure I've missed very very many, so if you could PLEASE list them in the comments thread the team would be so grateful.

KEEP UP THE GOOD WORK. IT'S QUITE PHENOMENAL WHAT WE'RE ACHIEVING AND I KNOW WHAT IT IS COSTING YOU ALL. 









FIRST LINKS TO SHARE - BEYOND THE BARRIERS


Here are the first few links to share, read and generally support the Spartacus Way!!!!!


Centre for Welfare Reform
http://bit.ly/beyondbarriers

Beyond the Barriers blogspot
http://bit.ly/1ho75Fu

Parliament TV - Watch live evidence on failure of ESA HERE!!!
http://www.parliamentlive.tv/Main/Home.aspx

Guardian Sue - Listen to Disabled People
http://www.theguardian.com/society/2014/apr/09/better-way-support-disabled-people-benefits-esa

Ekklesia
http://www.ekklesia.co.uk/node/20384

Spartacus Network
www.spartacusnetwork.org.uk/index.php/esa

BEYOND THE BARRIERS - LAUNCH!!!!!

Good morning.

The Spartacus team have been working for three years on research into ESA, WCAs, the Work Programme and employment for sick and disabled people.

Today, we launch Beyond the Barriers, the most comprehensive report to date on how the system currently fails, but more importantly what we need to do to improve it.

You can read the report 


You can read the press release


Beyond the Barriers aims to start an enormous conversation about what should replace ESA. People will be taking part in it across the political spectrum, all around the internet.

As we launch, experts from the disability community will be giving evidence on the failures of ESA to the Work and Pensions Committee live on Parliament TV You can watch and share the link 


If you want to get involved, we've provided the following tools to help :

TWITTER

Starting from now you can follow the new Beyond the Barriers @spartacusreport on Twitter. The account will have news, updates and links throughout the day, so do keep an eye on it as a central info source

The hashtag is #BeyondBarriers 

Tweets start NOW!!!!

The next slot will be 12 noon, then 2pm, then 4 pm (Thats 1200 hrs, 1400hrs and 1600 hrs for those with a military strategy!)

Here are some tweets you might like to use : 

BREAKING: from #Spartacus : groundbreaking report into disability
benefit flaws - and how to fix them. #BeyondBarriers http://bit.ly/R2hD2k

BREAKING: Major new report by #Spartacus "important contribution" to
disability debate (Anne Begg) #BeyondBarriers http://bit.ly/R2hD2k

#Spartacus team shows a way 'beyond the
barriers' of current disability support #BeyondBarriers http://bit.ly/R2hD2k

"If you read one policy or political document this week it ought to be
#BeyondBarriers" @LabourList http://bit.ly/R2hD2k

Major new report by disabled ppl shows policymakers how to
fix failing disability benefit system #BeyondBarriers http://bit.ly/R2hD2k

WATCH! Parliament confirm #BeyondBarriers report findings LIVE!! http://www.parliamentlive.tv/Main/Player.aspx?meetingId=15297 http://bit.ly/R2hD2k

We hope to have staged links available, which will link to the case histories you wrote for us on the Beyond the Barriers blog at http://beyondthebarriersspartacus.blogspot.co.uk/,  explaining how benefits or support have helped you to cope, and even to move on. Please visit the blog and add comments

Facebook Follow the WeAre Spartacus page for updates and links https://www.facebook.com/weare.spartacus.1?fref=ts

Local Media

We have a template letter out that you can send to your local paper, or to a National if you wish. You can view, copy and paste the template from 

HERE 

Contact your MP

We have a template that you can send to your MP - it can be found 


Please  feel free to amend it or write your own :-) Personal letters are better but any letter is better than none ;)

You can find your MP here; http://www.theyworkforyou.com/ or here; https://www.writetothem.com/
Internet Blogs

There will be articles and blogs all over the internet - we will try and tweet and Facebook the locations for you as soon as we are aware of them.

We also have our own blog site just for this report. On that site you can see the whole report and supporting work.
You can find it here; 





Saturday, 5 April 2014

New Spartacus Website!!


We're all really excited to announce the launch of the new Spartacus website!

http://www.spartacusnetwork.org.uk

You can still find all of our past work there with a few new additions

Stef Benstead has taken over the running of the site. 2 years of campaigning is like 412 effort years so huge thanks to Jane Young, the previous site director who produced and guided so much important work. 

The old address, http://wearespartacus.org.uk is now defunct but bear with us while we set up a redirect to the new address.

Stef is one of our lead researchers on ESA and has produced some seminal work already such as ESASOS, a report into how successfully Harington recommendations had been implemented and the Spartacus submission on ESA to the Work and Pensions Committee. 

Next week, Spartacus is on the march, so please watch twitter and Facebook extra carefully and if you want to be involved, email me at suey2y@gmail.com before Wednesday

It will be a great chance to launch the re-designed, updated site and I would appreciate it so much if you could help me to let people know about the new address. 




Sunday, 30 March 2014

CRAPICO4S BE WARNED


So, on Thursday 27th March, the DWP Press Office announced that Atos were no more. 

Today we are announcing we are seeking a new provider to replace Atos for the Work Capability Assessment

Let's be very clear : This is cause for celebration. It's reputation in absolute tatters, Atos was left with no choice but to slink off, tail between its legs to lick its wounds. They have administered a failing test badly and hundreds of thousands have suffered their incompetence.

But for nearly 3 years now we've been warning that this was the only possible outcome. Atos would always fall because the work capability assessments themselves are so badly designed. They were contracted to fall. They were always the scapegoat. It's astonishing really that none of their board could see it, and as late as last year were bidding for yet more disability assessment contracts for the new PIP (personal independence payments, the replacement for DLA or disability living allowance). How do governments introduce appalling schemes designed to hurt and harm? Make sure there is a middle man, then when the inevitable collapse comes, you can deny all responsibility. 

But DWP ARE responsible and we must not let anyone forget it for a second. This is a very dangerous time for our campaigns. It is entirely possible that the DWP will simply replace Atos with Capita or G4S or Serco, the test will still be fundamentally flawed and nothing will change. We can't let that happen. It would be unconscionable for the DWP to re-tender the WCA contract without first conducting root and branch reform of the processes that guide it.

Do the DWP show any signs of this? Their next tweet said 

Aim is to drive up the number of WCA assessments and cut waiting times

So not to improve accuracy? Not to stop ludicrous decisions leading to suffering and even suicides? Not to right a wrong but to force through even more of the same! 

Later in the day, they released an official statement

Here's today's written ministerial statement on the Work Capability Assessment

Did you spot the glaring omission? 

WHAT HAPPENS NOW MR PENNING??????

You've just released an official statement confirming that an existing supplier has walked away from an enormous and sensitive contract. Millions of sick and disabled people are already IN the system, waiting for assessments, appealing decisions or being reassessed.

WHAT HAPPENS TO THEM MR PENNING?????

Will assessments continue? How? Who will do them? When? People are already waiting up to a year for decisions, what happens to them??

ISN'T IT SHOCKING THAT A GOVERNMENT MINISTER SHOULD ANNOUNCE THE TERMINATION OF A CONTRACT IN THIS WAY WITHOUT REASSURING CLAIMANTS THAT ALL WILL BE WELL MR PENNING?????

This is continents away from a joke now. 

We warned PIP had to be paused. 
We were ignored
In the end, they had no choice but to pause it

We warned the bedroom tax would cost more than it saved leading to soaring housing benefit
We were ignored. 
Now we know we were right

We warned that the Work Programme simply couldn't cope with the complexities of sick and disabled people
We were ignored
Less than 1% have sustained work for more than 6 months

We warned that Atos simply couldn't manage the volume of ESA assessments
We were ignored
Now, reassessments have been paused and decisions are taking up to  year 

We warned that Atos were simply the middle man
We were ignored
Now they've gone, seemingly leaving nothing in their place. 

WHEN WILL THIS GOVERNMENT START TO LISTEN? 
HAD THEY LISTENED FROM THE START, NONE OF THIS WOULD HAVE HAPPENED

Finally, what if no-one wants the job??? I find it almost impossible to believe that Serco or Capita or G4S would take this on. They've all seen the reputation of Atos utterly decimated by the ESA contract. Possibly irredeemably. Why on EARTH would they fill the gap? They must know that unless the tests changed significantly campaigners will fight them just as determinedly - possibly more so for having absolutely no excuse - I mean, one might argue Atos didn't know how bad things would get, how badly the tests would fail. Crapico4S know. 

COULD IT BE THAT ESA IS DEAD BY DEFAULT???


















Wednesday, 26 March 2014

Beyond Barriers

This is quite exciting.

So many of you are wonderful writers - my inbox is testimony to that every day - and I think it is largely the raw truth and passion of sick and disabled blogging that has provided our greatest breakthroughs.

Today, I want to ask any one of you to write for a special project. And for once, we can celebrate the beautiful and the wonderful and the magical.

Those of you who've followed my blog for any time, will know that I had many struggles with my own social security applications. I was refused DLA totally and went to the brink of appeal (and bankruptcy) over 18 months before they phoned and apologised just two weeks before my tribunal saying they had "made a dreadful mistake" that they "hadn't read my file properly, and crohn's isn't always so bad" - yes really.

It took me over 3 years and 13 assessments to finally get any care support in place at all to ease the tremendous and ever increasing burdens on my family.

But in the end, I was privileged to see what happens when the system is supporting you in the way that it should. The way it was designed to do. I won't go into detail here, I'll write my own post for the project, but if any of you have stories of how the support you do get has changed your life, I ask you to take a while to paint that picture for Beyond Barriers.

Did you get a motability car that changed your life? Perhaps, like me, you finally got some home care that revolutionised what you could achieve. Some might use their disability allowance to get to college or volunteer with others experiencing similar impairments.

It's been a long time since we told our stories. Since we inspired and explained and connected with people who have no idea what it's like to live with Lupus or kidney failure or cystic fibrosis o any of the thousands of serious conditions that mean you need a little help to achieve all that you can.

Beyond Barriers should show how a system that works as it should can be so much more valuable than the sum of its parts.

But if we want people to really read them, to be touched by them, to think about experiences they can only imagine, they must be short. That one thing that meant the most to you. A lifetime of insight in just 2 or 300 words. Some must inevitably be longer, but the most successful will be the most innovative. The beautiful poem or the raw, honest anecdote. They will explain something remarkable or convey a complicated emotion in a brilliant analogy. 

Anyone who wants to take part can send me their Beyond Barriers story of how adequate support or care or just a little unexpected understanding has changed their lives in beautiful ways. In a few weeks, I will set a day where we can all tweet them under the #BeyondBarriers tag and share them on Facebook and elsewhere, but for now, if you could just email them to suey2y@gmail.com, I can start collecting them together. Please don't use the hashtag yet as if we want it to trend, it's better all in a splash on one day. 

Finally, please, don't be shy. So many of us think we have nothing of any value to say, or we can't say it in fancy words. But fancy words are just sticking plasters for reality. Just write your truth and it will be better than good enough. 

Again, please email submissions to suey2y@gmail.com with the title "Beyond Barriers".