Friday 29 June 2012

BMA Demand immediate end to WCAs!

Thanks to the tireless efforts of the Black Triangle campaign group, I have some rather startlingly good news!

The BMA - that bastion of conservatism (small c) have voted at their annual conference to demand an immediate end to Work Capability Assessments (WCAs). WCAs are the "fit for work" assessment used to determine eligibility for Employment and Support Allowance. (ESA)

WCAs have been found "unfit for purpose" by every major study into them. Recently the Chief Executive of Mind stood down from the Government's WCA advisory panel, unconvinced the Government had any real interest in changing the assessments. Currently 40% of cases go to appeal and 40% of appeal decisions are overturned.

The BMA vote follows votes by GPs in Scotland and England to also demand the immediate withdrawal of WCAs.

It is astonishing that this isn't bigger news today. Without the support of doctors - who say that WCAs are harmful to their patients - the Government faces it's first serious challenge in implementing its welfare reform agenda.

Yet again, we must report our own news, so could I ask that anyone reading this, or reading the Black Triangle page share them everywhere you can? Facebook, Twitter, email, blog it; we must make sure that this story gets the attention it deserves.

It is a landmark in the campaign to see an end to ESA and WCAs or at the very least a total re-design of the system to make it serve the sick and disabled people it currently punishes.

At this point in time, almost every major charity, every campaign group, the CAB, the Liberal Democrat Party and now the BMA, representing doctors, oppose WCAs in their current form. All have called for major improvements to the process of assessing whether someone is able to work or not. Now doctorsw demand that they be withdrawn altogether until they can be made safe for their patients. 

I would remind Liberal Democrats that it is their party's policy to oppose the one year time limit on ESA and to make WCAs fit for purpose.

Finally an enormous "thank you" to doctors up and down Britain for standing up with us, your patients. For seeing what is just and what is not, for speaking out when so many are staying silent. To see our evidence when so many choose to look away

The censored MoJ Video is back!

If you saw this post on my blog earlier in the week  by the brilliant Benefits and Work site 


Well, if you click on the link to youtube now, the kind, supportive video has disappeared. Again

Grayling demanded the video was removed from the Ministry of Justice's website months ago, but a few days ago, it reappeared. It seemed the MoJ had decided they could and would show it after all.

Thousands of campaigners shared the video online. The last time I checked nearly 9000 people had watched it, but it could have been more in the end.

What was so striking for me though, was how shocked people were about how nice the video is. We are so used to being called "stock" or "scrounger", "lazy" or "feckless" ("festering" was my favourite by a whisker though I think) No-one quite believed a government department produced a video that sounded like they....cared?

So, without further ado, the hawk-eyed @AzuriteEnigma has found another on youtube here

By sharing the link, we can carry on sharing a very helpful, reassuring video that anyone appealing a benefit decision ought to get a chance to watch.

I am honestly racking my brains on this one, but I the only reason I can't think of to remove the video, is because it's too nice. Stay classy Chris Grayling

Thursday 28 June 2012

The Horror Film that Never Ends

PTSD pops up in the oddest places eh?

I mean, I've got simple ones after my recent hospital stay - Mum's dying in books and on film aren't doing me any favours at all. You'd be astonished how often this seemingly rare narrative pops up. It's happened to me 5 times so far. A voice starts to scream in my head "YOU NEARLY DIED YOU NEARLY DIED YOU NEARLY DIED" I do actually mean that it screams. It shouts with an urgency as though the subtext might be "AREN'T YOU LISTENING YOU STUPID BITCH - YOU NEARLY DIED - THAT WOMAN LYING THERE COULD HAVE BEEN YOU, THEY COULD BE YOUR KIDS CRYING AND LOST" I can barely hear what people are saying to me over it. I shake, my hands go clammy. Physically I find I've scrunched into myself, like a little, defensive ball.

But then there are weird ones. The smell of the treats I bought in hospital. You know in a sci-fi film where the actors get sucked backwards into some kind of vortex at a speed only achieved through cgi? Well that's what flashbacks are like for me. I smell the lovely body mist and I am there, sucked back into a starched linen bed, frightened and hurt.

Weirder still is the spicy parsnip soup. The first thing that I was allowed to eat after surgery that rebelled urgently from the confines of my stomach, reappearing with spicy petulance for an hour or two. I saw a tin in the supermarket last week and bile rushed into my mouth, my heart raced, and I found myself looking for the door, to run away - run and run and run and run until the images faded. If only running were an option.

I picked up a pillowcase to put in the wash, forgetting it was the one I took as comfort in hospital. It reeked of antiseptic, sweat, pain and liquid feed. I gagged, threw it urgently away from my face, found myself shaking my head in an odd twitch, up and to the right. I realised I was trying to make a no-longer-present feeding tube comfortable. Whirling images of vomiting chemical waste, sweating so much the sheets were drenched, the tube bruising the back of my throat from the constant gagging so I can no longer swallow.

This morning, I have to see a doctor. Not my doctor; the old, paternalistic partner at the surgery. I can't tell you the details of why this will be an incredible difficult and awkward consultation, but believe me, I may as well be there to persuade him to give Dr Shipman another chance. I'm shaking and small. In my mind, I'm a little girl, lost and scared, every scenario is running through my head like the chatter of a thousand crickets. The strong, eloquent, witty me is gone, replaced by the worst kind of me. A doubtful me, a stuttering, whining, pleading me.

Recovery is not just about scars healing. Not the ones you can see, anyway.

Wednesday 27 June 2012

Help Make Grayling Mad

This was posted on the quite excellent Benefits and Work site and then re-posted on Black Triangle, but it seems many can't view it on either. Here it is again if you're having trouble. 

Whilst making Grayling angry is one of my reasons for breathing, I thought the tone and sensitivity of he MoJ video was striking. It couldn't be more different to an experience with the DWP or Atos. If the latter are genuine about improving their customer interactions, this should be their guide in everything that they do!

Here’s an opportunity for you to help make a minister wish he hadn’t interfered.

Back in March we wrote about the Ministry of Justice’s (MoJ) employment and support allowance appeals video (external link) on Youtube.  The video was pulled after less than a week, on the orders of senior officials.
, nu
Independent benefits expert Neil Bateman (external link), discovered that the video was taken down after employment minister Chris Grayling emailed the ministry complaining about, amongst other things, the fact that it told claimants:
  • that they are twice as likely to win their appeal if they appear in person rather than having a paper hearing;
  • that the DWP doesn’t normally send a representative to the hearing;
  • to send additional evidence to the tribunal, when Grayling wants it sent to the DWP.
Yesterday, three months later, the video reappeared and, to their credit, after their initial panic MoJ officials seem to have left it unaltered.  The video is actually reasonably informative and reassuring for people who have no previous experience of appeal tribunals.

Normally, however, MoJ videos get very little attention – one has had just two views and few of the 120 videos on the MoJ channel gets more than a few hundred views.

If Grayling hadn’t intervened this video would probably also have remained largely unseen.  Now, however, we’re askingBenefits and Work newsletter readers to make it the most popular video the MoJ has ever produced.  The current record holder has had 4,269 views and the ESA video currently stands at 1,063.

So, please, make Grayling mad by taking a look at the video and passing the link on to anyone you think might benefit:  (external link)

Members can read more and comment here.

I was just following orders......

Oh Britain, you look away.  

Please see.

See them claim that the state should not fund the work of charities trying to alleviate homelessness if the group dare to disagree with what they're doing? Have you not heard? Any disagreement : Striking, campaigning on benefits helping colleagues through union work - they would starve them out of that protest by stopping benefits or pay? See them silence us? 

What about the quadriplegic, non-verbal, unable to feed woman, totally reliant on the state for her dignity and support? She uses eye movement software to write her negative opinions about welfare reform? Because she has lost 8 hours a week care and has to find another £170 a month towards her housing benefit - but only for a while, because they are making her move to a smaller property when there are no smaller properties and she will have to leave behind the 1000s of £s worth of modifications to her home that have been done over the years? 

You would starve her into silence? Oh wait..... not flickering her eyes? 

If you think this is fantasy it absolutely isn't. It is happening up and down the country - yes to people that are that disabled - and you are all turning away. You are choosing to look away. You quote comforting opinion polls from a public fed a steady stream of scrounger propaganda as though that means something?? 

Politicians, you crow that welfare reform is "popular" without even the most basic understanding of the policies you support? You seek the popularity-refuge of rationing nappies for disabled adults and leaving people in their own filth overnight? You sigh with relief that people will be delighted when you leave disabled people trapped in their own homes without the vital services or transport they rely on?

There is a case in Worcester where the council wants to put disabled people currently living independently, back into institutions again because it's cheaper. Google it - I'm not making it up. Would you accept asylums for your own children? See them locked away?  But you turn away. You ignore the 0.5% fraud rate (DWP own figures) and you continue to believe what you're told "Ah but so many are just trying it on" 

You turn away. You look away. You let it happen. 

As Edmunde Burke said "All that is necessary for the triumph of evil is that good men do nothing"

Sunday 24 June 2012

Run Rabbit Run

Do please listen to the song below as you read this post if you can. Somehow it puts it all into a historical context. 

So, Cameron is planning to scrap housing benefit for under 25s then?

Gove wants to bring back 'O' Levels and a two tier education system.

Meanwhile, Jimmy Carr is the most evil man on the planet. It's official. Because he AVOIDED TAX!!! Look! Look! Over there! A celebrity!

And we all ooh and ahh at the evil celebrity who did exactly what his "betters" in government did, but with way less ruthless intent. Meanwhile, in Mahiki bar, the real tax avoiders of the next generation chuckle over their champagne cocktails and Aston Martins like flappers at the Ritz dancing through the Blitz.

While the guardianistas and twitterati faint and rage over possibly cutting housing benefit for under 25s after the next election, it is oh so easy to forget that this government actually cut housing benefit for under 35s, now consigned to share a room or live in a studio until most might hope to be parents themselves. Most disabled people are actually trying to find £80, £140 even £280 a month extra to make up the shortfall in their rent already passed into law. £280 a month!!! Say it slowly. Got that laying around have you? Any suggestions at all how someone with profound disabilities might get their hands on that kind of sum?

And Gove levels. Oh please. No-one knew about it, Cameron asked for some spiffing ideas and Gove obliged. The public will absolutely love the idea, because the fact that 80% of students will be thrown once more onto a CSE scrapheap will not catch their eye. Meanwhile, as our schools are quietly sold off to MacDonalds and Murdoch, EMA grants are slashed and youth unemployment is at it's highest since records began, the genius of the Pob-Gove keeps us all just outraged enough over bibles and yachts that we don't notice.

I could go on and on, but this wounded government are in a corner and it makes them dangerous. Expect a steady stream of unbelievable headlines and here's a thought, if they sound unbelievable, they probably are.

We're in a recession. NOW. A deep deep recession almost entirely re-started by THIS GOVERNMENT
Sick and Disabled people are being forced back 40 years by  THIS GOVERNMENT, NOW
Our schools are being sold off NOW to businesses by THIS GOVERNMENT
Our NHS is being privatised NOW by THIS GOVERNMENT

It is THIS GOVERNMENT, NOW who are presiding over rising crime, rising waiting times for medical treatment, fewer police officers, the rationing of justice, record unemployment, the destruction of business confidence, the highest debt since records began, failing to meet their deficit reduction targets, sacking teachers, decimating pensions, utterly failing on immigration and Europe, returning elitism to education, the persecution of sick disabled people, millions more quietly eased into the 40p tax rate..... shall I go on? Did they not give us quite enough to be going on with?

Of course they want to distract us. "Look! over there! a Jubilee-Celebrity-Get-Me-Over-To-Essex!!!!"

"Hey, people! Look, an Olympics-Factor-Bake-Off!!!"

But really, the most sniggerful of all must be "Here's what we'll do after the next election" A reasonable response would simply be "Over my dead body" Campaigners must surely spend every waking moment ensuring that not only do they not get to do anything at all after the next election, but hopefully, that they can never, ever , EVER be elected again.

We can only do that by doing what we do best. Focusing on our own issues, the issues we are experts in. Issues affecting millions of people NOW. Never being distracted by ludicrous soundbites and party-rallying proposals. We can repeat the mistakes of the 80s or we can keep our heads down, keep writing the same stories, exposing the same injustices, reaching out ever further to engage with those who as yet have no idea.

We have to win hearts and minds. We have to show that our version of reality is the accurate one. By doing that, we make the government look ever more desperate, ever more hunted.

They are the rabbit from the song above, and we are hunting them down. All the clever PR and spin in the world should not be able to turn that situation around.

Wednesday 20 June 2012

Disability Debate - A Sketch

Well, I'm not really sure what to say.

An alien arriving in the middle of the Labour Opposition Day disability debate today would have found it very hard indeed to learn anything of any note at all.

He would surely have come away confident of two things. All sick and disabled people work in Remploy factories and the two tribes of this planet hate each other very much.

He might have been puzzled by how long lists of statistics seemed to make the case for totally incompatible claims. Yet each side seemed so convincing! Each did such a good job! It was almost as though the job mattered more than the actual subject matter. Everyone loved these disableds though, that's for sure.

Well apart from the ones who couldn't work.

But they all made such a good case for how much they loved the disableds! How could either tribe be right about how much the other side hates them? It couldn't all be true?

I feel sort of deflated. What was this pantomime parody of 10 million lives? It was like watching a nativity play version of Hamlet. It seemed somehow unrelated to reality.

To be fair, I must confess I missed Anne McGuire and John McDonnell, the headline acts, but by that time I'd already had to put down a sharp knife and step away from the arsenic. It was like watching paint dry - or was that hope die?

Kaliya Franklin said "Behave like the adults you claim to be let alone elected representatives. Stop blaming everyone else & be constructive. Dear MP's. Of ALL parties. I can do better than this semi conscious half way down a bottle of oramorph"

I can confirm this to be true. She can. And regularly does.

Tom Pollard from Mind said the debate had "created a bit of heat but very little light - no informed discussion of the real problems that need sorting out"

Dr S J Campbell, co-author of the spartacus report said "MPs don't come to debates.Those that do don't know the facts. Others only talk about 1 part of problem (Remploy)"

Perhaps the most irritatingly possible quote came from a Tory MP I'd lost the will to identify, who suggested that this wasn't in fact a debate, but a "Labour press release designed to appeal to an audience."

IDS mooed a lot in a low, sort of grunty way when he agreed with something. Otherwise he took turns smirking and looking outraged. There was something vile about watching a man causing actual outrage mimicking the expression for his own ends.

Maria Miller was chillingly good. Yes, she was. I did say good. Evil clearly, but polished-evil. This is worrying. If they've learnt to re-programme her, she might stop saying such silly things and offering us such open goals..

No-one else was there really.

Can't say I blame them.

Tuesday 19 June 2012

Winds of Change


Oh Spartaci, I have good news! I know it's rare and I know how hard it is to believe good news when it finally comes.

I know how hurt we all are, how abandoned we've been, how self sufficient we had to become.

But the battle was always about changing all of that. Sometimes I think we as campaigners forget that the point is to win. To change things. Not to fight the fight for the sake of it or become so entrenched we can never solve any of our problems.

When I started my blog I had one aim : to break the political consensus that assured the public we were all worthless scroungers. 2 years ago, every main party and nearly all of the mainstream media agreed. We had no-one and nothing.

I didn't want to half kill myself opposing the welfare reform bill, but we had no choice did we?

A few weeks ago, Ed Miliband replaced Liam Byrne as the head of Labour's policy review with Jon Cruddas. Jon had been involved in discussions about welfare - with campaigners and others - for a long time and back in June last year, wrote this amazing article with Jonathan Rutherford.**

It says everything that we had wanted to hear from a Labour party genuinely interested in changing. I could quote it all, but these snippets are the ones I think it was most important for sick and disabled people to hear.

"We need to address some home truths about the Labour government's welfare changes because they did not make a proper distinction between the unemployed and the sick. As a consequence, they have seriously eroded the protection of disabled people and those with limiting long-term illness. The methodologies that underpinned much of our argument are questionable."

"The conditionality built into Labour's welfare changes failed to take into account the high numbers of people with limiting long-term illness. It treated them as if they were simply unemployed and so made a serious misjudgment about the levels of incapacity that actually exist. It informed the design of the work capability assessment (WCA) introduced in the 2009 act. The WCA is not fit for purpose. It is a source of fear and deep anxiety for people who are mentally ill, parents of adult children with an autism spectrum condition, and literally hundreds of thousands of others with complex and intermittent illnesses who want to work but know that they cannot in the way expected of them by the government and employers."

"Labour has to come out fighting in exposing the cruelties, injustices and humiliation being inflicted by this government on the most vulnerable of our society. It means owning up to its own past mistakes. So be it, let Labour be its own best critic."

This man is now in charge of the policy direction of the Labour party. We may not have won the war, but this must be a significant battle. Jon has just confirmed to me that he stands by the article. No wriggling, no qualifying, just a confirmation that he meant what he said a year ago and that he means it now.  

This isn't an isolated event. A few weeks ago, we heard this speech from Liam Byrne :

and tomorrow I believe there will be a debate in the house of commons that we will enjoy. As soon as I get confirmation that I can, I will post the details here - please check back throughout the day.

To give Ed Miliband the credit he must surely be due (at least today ;) he did phone Kaliya after we put him on the spot at Labour conference last year. He did listen. He did appoint Anne MacGuire to the shadow disability role, did change the tone on disability after that and now, he has appointed Jon Cruddas to head up the policy review.

Politics is fluid, those "winning" today may not be those winning tomorrow. But as things stand, I am finally convinced that Labour mean to change their attitudes and policies on disability and illness. The first step in re-building our trust was always to admit they made mistakes, and the article above does just that.

It makes me very, very happy indeed.


Liam Byrne joins in the Labour sickness and disability love-fest with this motion on sickness and disability. Labour have given one of their Opposition day debates to a debate on Disability and Social Care tomorrow after PMQs

Here is the full text of the Labour motion to be debated.

That this House believes that cuts to support for disabled people and carers poses a potential  risk to their dignity and independence and will have wider social and economic costs; 
regrets that the Department for Work and Pensions has dropped the aim of achieving disability equality; 
whilst recognising that Disability Living Allowance (DLA) needs to be reformed, expresses concern that taking DLA from 500,000 disabled people and contributory Employment Support Allowance from 280,000 former workers will take vital financial support from families under pressure; 
expresses further concern at the Work Programme’s failure to help disabled people and the mismanaged closure of Remploy factories; 
notes the pressing need for continuing reform to the Work Capability Assessment (WCA) to reduce the human cost of wrong decisions; 
agrees with the eight Carers’ Week charities on the importance of recognising the huge contribution made by the UK’s 6.4 million carers and the need to support carers to prevent caring responsibilities pushing them into ill-health, poverty and isolation; 
and calls on the Government to ensure reform promotes work, independence, quality of life and opportunities for disabled people and their families, 
restore the commitment to disability equality in the Department for Work and Pensions’ business plan, 
conduct a full impact assessment of the combined effect of benefit and social care cuts on disabled people and carers, 
reform the WCA descriptors as suggested by charities for mental health, fluctuating conditions and sensory impairment 
and re-run the consultation of the future of Remploy factories.

Monday 18 June 2012

Cover me! I'm going in!

It's one of "those" mornings.

You know when you wake up, stretch, think comfy thoughts, smile a bit. Then your brain wakes up? One by one, thoughts like hand grenades, explode the duvet-draped myth that this could in any way be a good day.

I hate that. As the saying goes, "When troubles come they come not single spies but in battallions"

To stick with a military analogy, I'm surrounded on all sides, temporarily outflanked on the right, outnumbered and ill equipped for the battle.

I have a few brave allies and my ammo is reduced to words.

If it was possible to fight all of these battles at once in an orderly, methodical fashion, it might be easier, but peeking out from under the duvet, it's all I can do to make a start. I sip a first cup of tea every morning, waiting for the huge lump of panic to subside, deciding not which battles are the most urgent, but which I can mange - either physically or emotionally on that particular day.

After a while, on auto-pilot, I pick up the phone, sift through one or two of the many, many files containing my future and start dialling. I hold on lines, I get passed from this department to that. I am adjourned, delayed and postponed. Call backs don't call back and appointments never materialise.

And all because I shook my insignificant little fists at very, very, very, bad men. All because I spoke out. All because I decided enough was enough.

This sticking your head above the parapet thing is not all it's cracked up to be, I can tell you. Truth is totally irrelevant. They can and will do whatever it takes, these "baddies" (as my 4 year old might describe them) and then the onus is on you to prove them wrong.

Even if I could write about it all here, I imagine very few of you would actually believe me.

But I may have to hope that you do soon enough. I've got you lot and a laptop and I'd better cross all of my fingers to make sure neither fail me.

**I wrote this during the last minute frenzy of the Spartacus Report campaign. You took it as meant at the time, a a joke, but it was never a joke, it was a pre-emptive strike.


As I've mentioned before, please don't hypothesise or assume about who I'm writing about here. You all know well there are plenty of different people I've offended, many cages I've rattled. For legal reasons, I have to remain vague

Friday 15 June 2012

For Shame Clapham Junction

So, I just got in from Surrey, having given a grown up, Spartacus talky thing to Social Work lecturers at Royal Holloway University.

As if all that travelling malarkey isn't exhausting enough, the lifts were out at Clapham Junction and a porter faced with me, a cane and a heavy bag just shrugged and left me at the bottom of an endless flight of stairs.

He didn't come back and having watched two adjoining trains to beanbag-ville, Sussex, leave without me, I batted my eyelashes at a man mountain fella, asking him to carry my bag and crawled up the steps on all fours.

So, for anyone considering attending the Paralypics - including athletes, we're not quite there yet. You may want to reschedule until 3012

To cheer myself up on the ouchity-bumpity train journey back, I wrote some limericks about silly politicians. Hope they cheer you all up too.

It started with a dare that I couldn't write a limerick about Jeremy Hunt without dropping a c-bomb.....

There once was a dandy named Hunt,
who achieved an incredible stunt.
Though he lied through his teeth
He demanded belief
On deception he led from the front.


There once was a knobber called Dave
Who had a whole nation to save
He tried in morning
But soon started yawning
More fun to make poor people slaves


You know that ex-soldier called IDS?
His attachment to workfare and fibs?
Well his Nazi salutes 
And impeccable suits
Won't save the disabled wee kids


Oh Gideon give us a break
From your chums who are all on the take
If you must take our cash
Give it back in a flash
Or we'll show you the garlic and stake


And then there's the asshat called Grayling
Who's work programme seems to be failing
He eats little babies 
And lunches in Hades
But his favourite hobby's impaling. 


Oh Theresa now who have you spooked?
In your jackets that look like you puked? 
You've upset the police
Tell us when will it cease?
Or are we just all to be nuked?


Just realised I hadn't put any links on my blog to any of the media from Spartacus Report. At the very least I felt I had to link to the Newsnight. You know, I did good, but HOW often did I have to slap Maitliss down, drag her onto the actual issues, correct her mistakes??

How much longer did she give Grayling than me to speak, and she even tried to shut me up when I did get to talk. I can see why you were all so annoyed looking back.

The best line surely has to be where she accuses us of demonising the Government. Pot, Kettle, Pillock, I say.

Other media links  BBC News Me and  Maria Miller on Radio 5 Live BBC News 24

Tuesday 12 June 2012

When winning isn't enough

As many of you know, I spent yesterday making sure that as many people as possible heard about the death of Karen Sherlock and the fear and exhaustion of her final months.

I did what a writer does. I wrote. Then I wrote again. I tweeted the great and the good, charities and politicians and I made them hear her story. But all through the madness of a story spreading around the world, I don't need to think. It's only when the messages slow down and the journalists stop calling that I face what the fury of writing tried so hard to soothe. Karen had died and I couldn't save her.

In the epic fight against the Welfare Reform Bill, we campaigners chose our weapons. Some polished the sword of truth to use against large corporations like Atos, responsible for so many of these terrible decisions that ruin lives. Some concentrated on the shields to protect the Independent Living Fund, others on exposing the lies of our politicians in parliament. Yet more dug up news stories and challenged social care cuts.

But I focused on Employment & Support Allowance and most specifically, Government plans to time limit sickness benefits for all but the most desperately ill or disabled to just one year. It's ironic that I came to be known for the Spartacus Report, exposing the myths behind Disability Living Allowance, because actually, it was not my greatest battle.

So, last night, exhausted and horribly deflated at the news that had had hovered over us all for so long, finally a reality - the death of one of our warriors - I suddenly felt enormously and helplessly angry.

I'd worked with Liberal Democrats for months to persuade them, oh so carefully to first hold a vote at their annual conference, and then to support it. I'd put aside my own politics at a time when few others would. Finally after months of planning, they pledged for

" Liberal Democrats in Government to oppose an arbitrary time limit on how long claimants can claim contributory ESA."

I won! Of course others were involved, but this was my very specific battle. I persuade the Liberal Democrats to oppose a policy that I knew would be dangerous, I knew would cost lives like Karen's

I can't tell you the excitement of that day. We won!! It was the first big breakthrough of our campaigning, the first time anyone stood with us, heard us, defended us. You can read about it here.

For months and months and months, I ran a campaign to lobby peers about the time limiting of contributory ESA. I don't know if anyone ever campaigned to peers in that way before. We emailed, we prepared briefings, we built relationships with individual peers we respected, we wrote endless articles and sent them in to parliament. We built spreadsheets to make it easier to contact peers when a particular issue cropped up. We pored over debates, we live tweeted every session of the Lords stages of the bill to make sure as many sick and disabled people saw democracy in action as possible, to hold peers to account.

And we won! We did it, we achieved what the media and the opposition failed to do or in most cases even tried to do. We won!!! We won every ESA vote in the Lords in a flurry of glory that left the mainstream media playing catch up. Do you remember Spartacii? Do you remember how it felt that day? We'd stayed calm and reasonable and intelligent. We'd put our case forensically, we'd pleaded and cajoled - some even begged. We'd built a database of last minute waverers and focused our efforts in the last few days on convincing them we fought for justice not special treatment. Do you remember? We did it.

And we won!!! We won for Karen and the 700,000 like her who would eventually lose all of their ESA under this most arbitrary of cruelties.

But I sat with my glass of wine last night and I wanted to scream out loud, to howl like a wounded animal "But we won!!" We beat you fair and square and you cheated."

Most of you reading will know that despite all of our work, our endless endurance, our David and Goliath resilience and belief, this Government cheated us. They cheated people like Karen.

They used the archaic convention of financial privilege to simply overrule the will of the Lords; they used their party whips to ignore the grassroots of the Liberal Democrat party, supposedly their coalition partners; they ignored every main charity and Disabled Persons Organisation and campaigner. They ignored their own Conservative peers who expressed doubts and concerns.

With arrogance and ignorance they simply abused their power and swept us aside.

Daily Karen asked me "Will we win Sue?" "Will we stop the time limit?" Frightened for her family and how they would survive. And I couldn't answer. I knew we should, that if there was even a scrap of justice left in our democracy we should be able to stop this nightmare, but I knew too, that a government that had lied and cheated their way through welfare reform were unlikely to ever back down.

Daily with a terrible, fragile hope in her tweets or emails, an urgency and a fear, Karen asked me "Will we win Sue?"

And days, even weeks after the bill had passed, she was still asking me "Surely we can still do something Sue? We won??" And I had to tell her gently, over and over that we'd won the battle but lost the war. We'd won the hearts of minds of those who mattered, but someone else had won their souls.

So Karen spent her last months fighting to escape the terror of the time limit, appealing, gathering "evidence" to prove what should have been as plain as day - she was ill and she needed our support.

And she won too. Just two weeks before her death she heard that she had appealed successfully. She had finally been put in the Support Group of ESA, meaning she would not be subjected to the time limit or forced to seek work she patently could not do.

Then she died. Again, it was too late. Again, the system had failed her. Again she was cheated. Cheated of the security she had fought so hard to win.


When I warned and urged and pleaded, I didn't want to be right. I knew this would cost lives, or at the very least make them miserable and barely worth living.

When the welfare reform bill passed I warned politicians that time limiting ESA would be the single biggest issue come election time. It would haunt them, possibly haunt the Conservatives forever. An emblem of cruelty that really did cross the line of decency. I promised them that I would make sure of it.

And I will.

Monday 11 June 2012

RIP Karen Sherlock

I just found out that Karen Sherlock, @pusscat01 has passed away.

Here is here twitter profile : "Chronic Spoonie, lots wrong. ESA stopped by this inhumane government. Preparing for dialysis. Each day is tough."

Karen embodied our fight in almost every way. She was desperately ill. Her kidneys were failing, putting a huge strain on her body. Ultimately it seems she died of a cardiac arrest. An operation had recently been cancelled at the last minute, though I have no idea why or if it is relevant to her death.

She had been found capable of some work by the DWP. Placed in the Work Related Activity Group, her Employment and Support Allowance was time limited to one year after the welfare reform bill went through. Not only that, but it was limited retrospectively, meaning that she only had a few months left to appeal for long term support (Support Group) before she lost everything.

I won't go into more detail here. It's not for me to list her complaints and trials, but there is one thing everyone in this country should know.

She was terrified. Beside herself with fear. She lived her last months desperately scared that her family would not survive the onslaught it faced. She was "the most vulnerable" whatever that is. The system failed her and she spent her last precious moments in this world fighting. For herself, for her family and for others. 

She was one of us. She was Spartacus. And now she's dead and she died in fear because the system failed her, because cruel men refused listen and powerful men refused to act. 

She spent her last months fighting for the "security" of £96 a week and the reassurance that it couldn't be taken away. She won her battle. Just two weeks ago she was finally put into the Support Group of ESA. After months of unbearable stress, resilient commitment and endurance beyond comprehension, she won her battle.

But she lost her war and we must all make sure that whatever comes, we win that war in her name and in the names of the many thousands more fighting for life and dignity. 

RIP Karen. We WON'T forget you. 

Sunday 10 June 2012

Reversal Therapy, Crohn's and the Seasick

Some of you may have noticed that I got exiled just off the coast of Dover on Friday. Due to hurricane winds (oh yes my friends, my appalling luck is not limited to matters of health) we were stuck at Calais for three hours, then couldn't dock at Dover for another two.

The water was a little choppy and one by one, most of the other passengers succumbed to seasickness. I'm afraid it was too much for my black humour to resist, and I lit up twitter with my hilarity at being the only person NOT being sick on a boatful of vommers. 

Simon, a twitter friend (@SilverCat) wrote this fascinating post about something called "Reversal Therapy. He's a gestalt therapist who blogs at' and has given me permission to re-post it here :

Reversal experiments: @suey2y vs the seasick

An illustrative example of accessing disowned/underused aspects of self, spontaneously enacted, and viewed from the perspective of gestalt therapy theory. This post is published with @suey2y's permission.
  1. In an effort to return to first principles, I've started re-reading Gestalt Therapy: Excitement and growth in the human personality, the original and still most effective statement of gestalt therapy theory. If, like many others, your exposure to gestalt therapy has been through Gestalt Therapy Verbatim, then I highly recommend you read the earlier, more theory-oriented GT.

    The first half of GT consists of a series of experiments that allow the curious reader to test out gestalt theory. I'd just come to the part about exploring polarities and imagining being in the reverse of my current life-situation, when I saw a highly appropriate series of tweets.
  2. suey2y
    Definition of irony : I am stuck on a ferry, 6 HOURS late docking due to hurricane gales. Am only person on board NOT feeling sick! #crohnie
  3. Sue Marsh, aka @suey2y, is a well known campaigner for disability rights, who first came into my awareness through the Spartacus Report. The irony of her situation as the only person not to be seasick is intense seeing as nausea and sickness is part of the daily grind for someone with Crohn's disease.

    The stage is set for a living, breathing reversal experiment. In terms of a polarity, we could say that Sue is more used to being identified with sickness when it comes to issues of general health and well-being. In terms of gestalt theory, this is seen as a continuum; we could work with this as the sickness-wellness continuum and ask where on that scale Sue would habitually see herself.

    Now, the statement 'I am sick' or 'that person is sick' carries with it the unspoken 'I am not well' or 'that person is not well'. Wellness is denied to the person identified as sick. What gestalt therapy has to say about polarities is roughly that the whole of the continuum exists within the person. By identifying someone as sick and not well, we are accepting one aspect of their self and denying another. Sickness and wellness only exist in contrast with each other; one cannot be sick without having a well-being with which to contrast being sick.

    As a consequence, when we identify with one side of a polarity, and deny that part of ourselves that must embody the other side in order for us to occupy the side we do, we lose access to that part of our self. It's a bit like only hanging out in the parts of a city that feel most reflective of who we are; we immediately lose access to sights and sounds and experiences further removed from our habitual sense of who we are. And the more aspects of our self we lose (read: deny ourselves) access to, the less vitality we have to draw on.

    In gestalt, the way to regain access to these parts of ourselves is to re-identify with them, hence the reversal experiment. It's mind-bogglingly simple, yet often very difficult to do in practice. It goes like this: having identified an aspect of your personality that is disowned (experienced as not-me), identify with that aspect by acting it out. This can be as elaborate as standing up, walking around, and getting fully into character. As a lighter touch, it can be thinking of I-statements to make from that perspective. The stronger the dis-identification with that aspect of personality, the stronger the resistance to the experiment; boredom steps in, you become tired, or shame blossoms up in the form of embarrassment and feeling silly.

    But if we manage to get into some creative play with what it would be like to occupy that reversed perspective, we will quickly tap into some potent energy:
  4. suey2y
    Who dares me to high jack tannoy, and tell every vommy lightweight passenger to go to work NOW you lazy bastards?
  5. suey2y
    They would look at me with horror, incomprehension. Welcome to my world. Sorry, but I think it's hysterical#crohnie #fitforwork
  6. suey2y
    It's like the world has suddenly reversed. I am the smug, thoughtless bastard eating the sausages, they are the imploring.
  7. BAM! Now this is powerful stuff; having reversed position, we get a cathartic release that expands the ego boundary to re-include a part of self that is usually denied. This is particularly valuable for me as a therapist, because I then get to experience first hand what it is that the person I'm working with is keeping at bay. Sure, we can talk about it, and makea lot of headway, but nothing is as valuable as direct here and now experience, of inviting the subject under discussion into the room.
  8. suey2y
    It's their illness behaviour. They aren't actually seasick
  9. Ouch! Ever had seasickness? Imagine being told, to your face, that you don't. Excellent, you now have some inkling of what happens in a fitness to work interview.
  10. suey2y
    I even have anti-emetics in my bag, but I'm not sharing cos you have to do, like, 10 yrs NVQ in vomming B4 docs allow you any RELIEF
  11. suey2y
    Ooh, I cld go round saying "Well of COURSE you were sick you ate that scone/drank that beer/smoked that fag .Aching with evil revenge urges
  12. suey2y
    Oh this gets better!! We're delayed AGAIN! It's like they're all in patients waiting for the nurse with the anti-sickness that never comes!
  13. Hopefully, you get the point. Somehow, the reversal experiment is more effective at getting across how someone experiences themselves than them explaining that experience. This is for two reasons: 1) the switch of positions allows for greater contrast, and 2) the reversal releases more energy than exploring the familiar.

    Essentially, the reversed position is a part of self, and so seeks expression. However, it is a denied part of self, so its expression is resisted. In order to resist expression effectively, that resistance must be at least equal in energy to the desire to express the denied part. Hence the energy released by a reversal experiment.

    There are many different reasons for introducing a reversal experiment in therapy. The aim is pretty much always the same though: to bring the disowned material into awareness, and promote a greater integration of the whole of the person. And in the context of public attitudes towards and between different social groups, the empathy generating power of this reversal becomes not only apt but urgently needed. After all, as one person tweeted:
  14. davidjwalsh
    if you don't follow @suey2y please read her tweets from about 1hr ago, and then hope you never get ill in the uk#itcouldbeyou
  15. Maybe if people who identified themselves as being generally in good health, in contrast to 'the sick' or 'the disabled', or if people who are 'employed' in contrast to being 'unemployed', played this reversal game for themselves, our society as a whole might be less willing to stomach the NHS and welfare state being shredded before our eyes.