Thursday 25 April 2013

R.I.P. Ronald "Joe" Page 1922 - 2013

My Daddy was born in 1922, in South London between 2 World Wars. A London still more likely to see horses travelling through Piccadilly than motor cars.

Born to parents who barely knew he was there, his early years were beyond modern imagination. He stole food to feed his little sister and, being Dad, no doubt, other comforts. By 11 he was thrown into a borstal where he would stay until they threw him out at 15, illiterate and unloved, without a penny to his name.

Any wonder then that he fell into an underclass who admired his survival skills, running messages for the Krays and other, more small time London gangsters.

But Ron took himself to night school and learnt to read and write. Brilliant, handsome, wily and more charming than any other man I ever met, he was a survivor.

Soon, at just 17, war broke out and Ron joined the RAF, lying about his age. He fought all through the second world war, trained to be a spitfire engineer, stationed mainly in the African desert. A generation of state sponsored murderers were trained to kill, then expected to come home and live like good little boys. He was knocked off the wing of a Spitfire (MAINPLANE I hear him shout) by Douglas Bader and taken prisoner by Rommel. But Ron survived. He always survived.

"Holding them back with cold steel" Spitfires in the background, his "bivvi" - home for 5 years - on the left

His generation got no reward for their great sacrifice. In retirement, his 7 lost years were marked in no way at all.

Ron would never be a good little boy. Why should he? Life had dealt him a tough hand and only a little ducking and diving would get him through. Long after he didn't really need to any more, he carried on, just for the fun of it.

He won ABAs. He boxed for the RAF - think for a moment what that meant; the status and admiration afforded a tough guy who out toughed all the other tough guys.

He played wicket keeper for Surrey Colts and every one of his fingers was broken and gnarled from catching impossible catches. Somewhere in the Lords archives, I believe, there is a picture of him taking a catch completely off the ground, in perfect parallel with the horizon. He had a trial for Walthamstow football club back when they were a 1st division club. He tried out the same day as Jimmy Hill. Dad was offered a place, but couldn't afford to take the drop in salary. Jimmy took his place and the rest, as they say, is sporting history.

After the war, he worked as a toolmaker, working his way up to foreman before starting his own spring making factory. I'm not sure quite how much of the business was legitimate.

He leaves 7 children - 4 sons and 3 daughters, of which I'm the baby. His princess.

Ron was a drinker, a bon viveur, a small time, loveable crook. He had a "look". Oh dear God, you never messed with the "look". The quieter he got, the stiller he became, the more trouble met the poor unwitting fool who pushed his luck.

After 77 years of devoted attempts to pickle himself alive and as many falls from various wagons, he gave up drinking entirely, overnight, just like that. At 77.

Pity a succession of hapless boyfriends who met "trial by gangster-Dad" as I was growing up. As a teen I hated it. I'd squirm as I saw him set traps for each to walk straight into as they remained blissfully oblivious right up until it was too late. But later, I came to rather like the selection process. If they turned tail and ran, they were rarely worth my attention. If they stood and toughed it out, they were generally keepers - and Dad admired them the more for it.

He swore he'd never give me away to anyone. My Dave melted his resolve. You might catch a trace of the f*** this "look" about it all though ;)

He met my Mum in the late 60s and they fell immediately in love, a love that lasted til the very end. They married one snowy day, just the two of them in wellies, no need for fanfare or procession.

He wasn't even a conventional man for his age. From a young man, he always cooked the Sunday roast at a time when most men were still demanding their pipe and slippers. Through his later years, he somehow managed enlightenment on race, homosexuality and equality of gender few of his contemporaries ever achieved.

Oh, he wasn't an easy Dad. The demons that haunted him from a broken, unloved childhood and a youth spent bombed from "arseholes to breakfast time" by Germans, left scars. We all need crutches and Dad's were booze and bravado. Charming, loving and hysterically funny by day, dark, sarcastic and brooding by boozy night, life with Dad was a roller coaster, but an exciting, challenging roller-coaster.

The stories I could tell! But I'm sure most would get him arrested posthumously. "The legend of the footprints in the snow", the night he and his then grown sons drank their way through an illegal brewery to "hide the evidence", the box of chickens, (?!?) swimming races down the Thames before the police could fish him out - you should have been cross, you should have stopped him, but no-one ever stopped him and no-one could ever stay cross. He smiled that crooked smile and all was forgiven. He talked the talk and charmed the charmless.

His advice made me who I am - "There's no such word as can't." "Worry, and you worry all of your life." "Watch the tiger when it's licking your ear." "Never sign anything." I could never have survived decades of crohn's without his unique brand of tough love and fierce pride. When everything was desperate, when I had used every last drop of hope and fight, only he would tell me to "man up". "Get up off that bed, kick that fucking doctors arse and FIGHT! Fight my girl, no-one's going to save you, save yourself." When everyone else looked at me with pity, he looked at me with pride, when others offered sympathy and cosseting, cloying reassurance that it was all too hard, Dad reminded me it was NEVER too hard - and what an example he was! If he could survive mastoids, meningitis (pre-antibiotics) malaria and peritonitis, I could survive anything.

Oh, men like Ron had their faults, but to be loved by them? To be centre of their universe? To know that no-one could ever hurt you and live to tell the tale?? To earn their pride? It makes life special, embroidered with golden fire and lucky stars, opportunity and competitive confidence.

When I got my degree, I swear he knocked on every door in our street.

His strength!! Men like Ron don't exist any more. He never grew accustomed to real food, good food, healthy food. He lived from a "chindet pot" a kind of curried stew of whatever Mum and I left. Everything went in and it was never emptied. Somewhere at the bottom of that pot was ten year old food, but his constitution was indestructible, his immunity resisted any illness, ever. Until the very end, his "treats" were a nice pot of jellied eels, a trotter or some nice chewy whelks.

He got a growth on his hand once and hit it with a hammer every day til it disappeared.

In his 70s, Dad liked to ride his bike to Bognor Regis and sit by the sea with a can of beer. In his dirty old bobble hat and body warmer with the stuffing hanging out, the eccentric old bugger looked like a tramp. One day a group of yobs tried to mug him. They threw his bike to the floor and tried to take his beer. He went quiet & still. He knocked the ringleader clean out with one punch and told them to run home to their Mummies. He was nearly 80.

Men like Ron shouldn't fade away. The massive stroke that left him helpless and insensible the day after my last huge op couldn't take him, it wasn't right! He should have careered of a race track, trying to be the oldest man to win a Grand Prix! He should have frozen stiff half way back down successfully climbing Everest.

But he lay there, and we told him we loved him every day as he faded quietly away. Perhaps the end wasn't fitting, but perhaps, after all, it was. The man who started life so alone, who fought so hard, who ducked and dived and conned and survived found peace with my Mum and I and the grandchildren he adored. Perhaps, after all, drawing a last breath and drifting away was the best end of all. At the end of his 91 years, he finally found peace.

With my boys, the light of his life

How do I live in a world he isn't in? Who will kick my arse and grit my teeth and tell me I can do anything? I suppose, somewhere, he will. As I remember his crooked smile and his cheeky grin, as I remember his enormous strength and indestructible lifeforce, he'll always be here. Where else would he be? Where else would he ever want to be but here with Mum and I forever?

My favouritest tweep, @DocHackenbush and separated-at-birth-twin just made this for me. I'll treasure it :)))

Tuesday 16 April 2013

Thatcher's Funeral - From the Most Vulnerable of All

Welfare reform. Much needed shake up of a system out of control or cruel and ignorant attack of some of the most vulnerable people in society? Most have an opinion.

Many like me, were fighting the welfare reform bill way back in 2011. We know every last detail, every twist and turn, every sweeping change and every technical detail. Believe me, it's cruel. 

On the whole, I think the cruelty is in the details. Oh, not the headline grabbing Benefit Cap or Universal Credit. They're largely PR stunts that won't save any money at all. Universal Credit could have been rather clever if only ministers had understood the details. If only they'd really understood the people they were legislating for. Their lives, the difficulties they face, the traps in the system, the precarious fear of a life on the margins of society. 

One of the most sickening details of all still grates with me almost daily. It was so cruel so unnecessary. It overturned decades of cross-party consensus and decency. It picked on a group so vulnerable it takes my breath away. And it stripped that group of basic rights despite ministers not actually understanding the policy at all. How cavalier can you be? How arrogant and out-of-touch? 

It was called the "Youth Premium" It only related to children who were born so profoundly disabled that they would never work as adults. Forget your Work Capability Assessments and your Scroungers, these children would never take part in society like you or I. Many would never talk, self feed, walk, play, laugh, fall in love. But they could still lead independent lives. Because we were a society that believed they should have a right to if they chose to.

The Youth Premium treated these children as though they had paid National Insurance. For a cost of just 11 million pounds, on becoming adults, these children were treated as though they had "contributed" through work and because of that, they were entitled to contributory benefits, they did not have to be means tested.

Such a simple thing, but what did it mean in practise? What did it mean to the people behind the numbers? The lives being toyed with? It meant they were entitled to live independently if they chose to. They were entitled to benefits in their own name, not as a means tested part of their family. Often, such profoundly disabled children had considerable compensation to see them through lives damaged beyond recognition by accidents. This compensation was just that. Money for an expensive future of care, adaptations to homes, aids to independence. For a lifetime, this money would have to pay for support just to make their lives as manageable as society could achieve.

No more. Any money would be part of the means test. They would have to run down reserves of cash or savings before the state would step in. Compensation is not income. Nor should it be. From the passing of the welfare bill, any security or savings put aside by families terrified what life would hold once parents or siblings had passed, would have to slowly seep away, leaving insecurity and hunger a shadow away before these few profoundly disabled neighbours and daughters and brothers could rely on any help or support from the state.

Our elite cabinet talked of how "unfair" it would be if "these people" "inherited" money but were still entitled to support from our social security system. No, they would simply have a little security to underpin the often modest state income someone with profound disabilities might expect. And how many of us can rely on generous inheritances anyway? Is that real life? A likely scenario? Of course not.

You might be wondering why I bring all this up again today. The law passed (you can see me pointing out to Chris Grayling why he didn't understand his own policy on Newsnight, here :

Well, it's that 11 million pounds. £11 million. In Westminster terms it would barely pay for the DWP's paperclips. It is a drop in the ocean of a welfare budget spanning 10s of billions. It only applied to a few thousand of the most disabled children in society (children just like Ivan Cameron, had he lived into adulthood.) But Lord Freud, failed investment banker and Minister for Welfare Reform, insisted that we could "no longer afford it" We could no longer afford to allow such profoundly disabled children lives of dignity and independence. No more security. No relief for worried families that they would be safe once they were gone. A cross-party consensus of decades, stripped away by ministers who didn't even know what they were doing.

This week, William Hague assures us we can afford £10 million for a ceremonial funeral for Margaret Thatcher. Opinion polls show the public don't want it, commentators from left and right are mystified, yet 2,200 people have been invited to a decadent funeral for a divisive PM who lies at the heart of many of the problems facing our society today. When I scanned the invitees yesterday, it felt surreal. A mish-mash of variety club has-beens, world leaders she shunned and elite aristocrats who shunned her when alive.

10 million for a dead PM, nothing for those living with some of the greatest barriers to society any of us will ever face. I actually feel a bit sick writing it down.

But perhaps, this is the most fitting legacy of all for a PM who assured us "there is no such thing as society"

Perhaps as she burns or rots (we will all do one or the other) every profoundly disabled life lived in chains of dependence because today's government didn't understand the details will haunt her. Perhaps she will see images of each and every one playing like a movie to her soul, wherever it ends up.

I hope so. Those children needed that £11 million. She doesn't.

Monday 15 April 2013

Guest Post by Tanya Marlow - The Truth about DLA

I wish every last person in the country could read this guest post by Tanya Marlow. A little truth to wash away the government lies on Disability Living Allowance. Tanya blogs at Thorns and Gold 

Why this government is failing the disabled AND the taxpayer (DLA vs PIP)

"I have seen a number of news items recently, including periodicals which should know better, saying something like this: 
“Disability Living Allowance, the benefit that helps with the extra costs of being disabled, is being replaced by PIP. PIP will have regular face-to-face assessments, rather than DLA which was based on self-assessment questionnaires. 
This makes it sound like DLA was an easy benefit to get, that it didn’t require any medical evidence, and that the fraud level therefore must have been high. It is plain misleading, and the truth of what is happening is being buried under debates about Wizard of Oz songs in the charts. 
Let me tell you the real deal with DLA. 
In 2008, when I first realised I was disabled enough to qualify for DLA, I filled in a questionnaire. It was relatively simple, with tick boxes, and you were given the option to write a little more. I ticked the ones applying to me (I couldn’t cook a meal for myself), and briefly explained the nature of my illness and why that meant that I was physically unable to cook for myself. You were asked for your GP’s details, so I assumed they would phone my GP to confirm my illness and the extent of my disability. 
They didn’t phone. They just refused my claim. 
The letter said, “You do not qualify for DLA Lower Rate Care because you can cook a meal for yourself.” 
Just that. 
They had not met me or contacted anyone who had examined me. They just looked at my description of my disability and called me a liar. 
I quickly discovered that this was not an unusual case: most people were turned down initially, and you had to go to a tribunal in order to get the right decision. I learnt that although the form appeared simple enough, you would not have a chance of getting your award unless you provided medical evidence from a doctor. Why they had not written that on the guidance notes, I just don’t know. In cases where they weren’t sure, they had their own medical examiner who assessed the claimant in person. 
So I appealed and provided them with a letter from my specialist who knew me and my condition well and had written up the notes of my latest appointment with him. He confirmed everything I’d said on the form. 
In due course I had a reply from the DWP: it was still a no. This time they had called both me and my doctor a liar. 
I got mad, so I went to tribunal for further appeal. 
At any point during this process, they could have sent the DWP’s own medical examiner to my house. They often do this as a matter of routine, in cases where the level of disability is in doubt. One lady who worked for the CAB described to me how the DWP medical assessor pressurised her to raise her hands above her head, even though she had said the pain from her Fibromyalgia was too severe. She broke down from his questioning and bullying tactics, but didn’t raise her hands above her head: partly because it would have caused her unbearable pain and made her Fibromyalgia worse, and partly because if she had done it, he would have ticked it off on his sheet as ‘can raise hands above head, no problem’ and she wouldn’t have got the benefit. As it was, he marked it down on his sheet as ‘refused to cooperate with the assessment’ and she had to appeal at tribunal (she won). 
When I went into the tribunal that day, three people (only one of whom was a doctor) questioned me. They didn’t only question me about my disability, but about my motives. “Don’t you want to get better?” they asked, as though disability were a lifestyle choice. “You will want to learn how to cook for yourself, won’t you?” 
I broke. I cried, and felt like a hypochondriac. I would have walked out (or rather, been wheeled out) there and then, had my degree-educated, thoroughly-researched husband not been there beside me, answering for me when I couldn’t face any more. I won my tribunal. I didn’t feel triumphant; I felt traumatised.

No wonder the statistics said those without CAB advice or legal support were far less likely to win their tribunal. They will have been bullied right out of there. And now, with the government cutting legal aid, I dare say those numbers of tribunal successes will be kept at a government-pleasing low, irrespective of whether or not the DWP make the right decisions. 
I was shocked at the effect that the DLA tribunal had on me. I had spent hours scrabbling around the internet to try and work out why on earth the DWP were refusing genuine claimants, and what were the ‘right’ words to describe your disability, all in order to get the £900-a-year benefit for Lower Rate Care. (Despite needing a wheelchair for any distance over 200 metres, I would not have qualified for the mobility component). 
The stress of the appeal, the being labelled a liar and scrounger knocked me. The emotional strain contributed to a worsening of my physical illness. I can quite understand why those who have mental illnesses are significantly in danger of committing suicide when they receive a wrong judgement from the DWP. 
A few months after the end of the appeal, the brown envelope came again – I had to reapply. The rate of fraud for this particular benefit has always been extremely low: even the DWP’s own figures estimated it at 0.5%. Frankly, I could understand why. The hoops are so hard to jump through. 
Under DLA, if your condition was variable or non-permanent, you were reassessed – regularly. This is nothing new. The only cases where people were not reassessed for DLA were cases where it would have been a waste of taxpayers’ money to do so, (for example, congenital blindness.) Now the taxpayer will be paying for such people to go through the stress of constantly being reassessed for PIP; presumably to check for the miraculous. (This also gives the government the option to further change the qualifying criteria for PIP in the future, excluding more disabled people from receiving help.) 
I will say it again: DLA was never awarded on self-assessment alone: you always had to provide written medical evidence from your doctor. They always had the option of sending their own DWP medical assessors – which they frequently did – and they always had the option to contact your GP and converse with them, which as far as I can tell, they didn’t. 
It was only in cases of severe and irreversible disability that they didn’t constantly reassess. This seems like a good use of the taxpayer’s money, not a bad one. 
And remember, DLA is a benefit to help disabled people with the extra costs of everyday living. it is not an out-of-work benefit: indeed, many people use their DLA to put towards hiring a car so that they can get to work more easily. (This is the motorbility scheme: not quite the same as saying ‘disabled people get a free car’). 
So what has changed? 
The biggest change is the descriptors for who qualifies as disabled. 
Can’t cook a meal for yourself? Under DLA: disabled. Under PIP? Not disabled. No benefit.
Can’t walk more than 100 metres? Under DLA: disabled. Under PIP? Not disabled. No benefit. 
And what of the claims that the government want to help the most needy?
What this means is that they will continue to give the benefit – the same amount of money, not an increased amount – to those who can’t walk more than 20 metres. 
But to all those who can only walk 100 metres (From a non-disabled space in the car park to the supermarket, but not inside the supermarket, and not the return journey to the car) – no help.
All those who can only walk 51 metres (from your front door, across the other side of the road and back again) – no help.
All those who can walk only 25 metres (from your front door, across the other side of the road, but not back again) – benefit cut in half.
All those who are too ill to cook a meal for themselves – no help. 
The government will give support to those who can’t walk 20 metres, this is true. 
But only if you come, once a year or so, to an assessment centre that may or may not have disabled access, run by an organisation (Atos) that has secret targets to keep the payouts as low as possible, (yet no penalty if their decision is found to be wrong at tribunal). You will then be seen for 30 minutes or so by a nurse or Occupational Therapist (doctors are expensive so kept to a minimum), who may have no knowledge whatsoever about your particular condition and the complexities of it. You better hope you look ill on the day. 
It will mean a continual fear of not knowing whether you will get your money. 
It will mean that the most vulnerable in our society will feel sick to their stomach every time that brown envelope comes in. 
It will mean a cut of £2bn on disability allowance, but an increase of almost £1bn to pay Atos to administrate these changes. 
It will mean 500,000 disabled people losing all of their benefit, just so that the government could say they were targeting scroungers and could then afford to give a tax cut to the richest in society.
This is what the changes will mean. Just so we’re clear.

Sunday 14 April 2013

John Pring's Weekly News Round Up

  • A disabled man has won compensation from the government’s “fitness for work” contractor Atos Healthcarebecause of the weeks of distress, pain and fatigue he suffered after being forced to attend an inaccessible assessment centre.
  • Another government minister has used misleading figures to try to whip up anger about the scale of spending on disability living allowance, in order to try to justify the coalition’s programme of cuts and reforms.
  • Fears are growing that the government could be preparing to scrap Equality 2025, the network of disabled people which advises ministers about the possible impact of new policies.
  • A Cornish politician who was forced to resign after suggesting that disabled children should be “put down” because they cost too much money to support, has decided to stand again for election.
  • The latest legal challenge to the government’s welfare reforms will “shine a spotlight” on the “injustice” of its new disability benefit, according to one of the three activists spearheading the case.
  • A union has disputed government claims that hundreds of jobs have been created for disabled Remploy workers made redundant through the coalition’s programme of factory closures.
  • One in four of the 36 Remploy factories that were condemned to closure last year are now helping to provide jobs for some of their former disabled employees, according to new figures.
  • A new survey will help build an accurate picture of how the UK is implementing the UN Convention on the Rights of Persons with Disabilities, and provide campaigners with ammunition when discussing policy with the government.
  • The two companies carrying out assessments for the government’s controversial new disability benefit look set to offer contrasting experiences to disabled people who undergo the tests.
  • Tuesday 9 April 2013

    John Pring's weekly Disability News Service

    This week's welfare stories by the passionate John Pring. If you're sick or disabled and don't read it from John first, it probably wasn't news. For John's own site, you can bookmark :

  • The minister for disabled people has again been accused of using misleading government statistics to “stoke up antagonism”towards disabled benefit claimants.
  • The government has been criticised for cutting funding for the adaptations disabled people need to live independently in their own homes, just as it introduces its controversial new “bedroom tax”.
  • The attorney general is considering whether to ask the court of appeal to lengthen the prison sentence handed to a man who killed a disabled, gay teenager in an apparent hate crime.
  • Survivors of the Winterbourne View abuse scandal will soon have access to their own dedicated helpline, thanks to funding from the Department of Health.
  • Monday 8 April 2013

    Disability Campaigners make the Headlines - Watch here

    Thanks as ever to Steve Sumpter (@latentexistence) for providing us with links to all the interviews Spartacii and others have been giving to counter the mis-information government are spreading today. 

    Please click here to watch and listen:

    We also have this comprehensive list of other welfare stories from around the UK today thanks to  @allbigideas

    PIP faces Legal Challenge!

    Thanks again to the impossibly passionate Jane Young, have today announced they will be working with  and  to challenge changes to the new PIP (Personal Independence Payments replacing DLA or Disability Living Allowance) mobility criteria.

    Campaigners like Steve Sumpter (@latentexistence), myself, Kaliya Franklin and Jane herself have been invited to explain on radio and TV today, just what the changes will mean.

    As regular readers will know, the government have constantly misled the public over the new benefit, claiming a 35% rise when Spartacus Report showed clearly that the rise is only 13% for the working age group who will be affected. Physical conditions have remained totally stable, whilst the 13% rise is almost all due to a rise in mental health conditions and learning disabilities, a trend seen worldwide, not just in the UK.

    The DWP misled the public over the first consultation, claiming broad support for the changes, when in fact there was almost none.

    After a passionate journey through the House of Lords, the government simply overturned all of the amendments we'd won (amendments that were reasonable and could have made PIP safer and fairer) using an archaic 16th century law known as "financial privilege"

    Even at that point, once the changes had become law, the government assured campaigners that once they announced the finer details of PIP, there would be no further policy changes, However, when "regulations" were finally announced just before Christmas, the criteria for claiming the most help with mobility problems had been slashed from 50 mtrs to 20 mtrs without consultation or warning.

    This means that many of the most vulnerable claimants of all will no longer qualify. A whopping 600,000 of them. The ability to walk 50 mtrs might just get you to your car and out at the other end, to, say, get to a supermarket scooter. 20 mtrs will get few people from their homes to even their car, leaving over half a million sick or disabled people effectively housebound.

    As we all rush from interview to interview, it's clear those put up to oppose us don't even understand DLA or what it does. With that in mind, I thought I'd lay out the key points here for any of you to use or pass on.

    All we can do is set the record straight whenever we are given the chance, so do feel free to copy and paste the following and send to whoever you can.

    1) DLA is a working benefit. It does not stop a sick or disabled person from working - quite the opposite in fact. It is often used for transport to and from a job if the recipient can't manage public transport, or for care at home, to enable the claimant to get up and dressed in the mornings just to get to work.

    2) The number of DLA claims HASN'T risen by 35%, for working age claimants (the only one's affected by PIP) the rise is 13%. There has been almost no rise at all in claims for physical conditions, the rise is almost entirely down to an increase in mental health and learning disability claims, a trend seen in every country of the developed world. By far the biggest increases come from demographics, children or pensioners, groups the government aren't transferring to PIP.

    3) There were always face to face assessments for DLA (Atos did those too) and claimants always had to support their claims with evidence from their own GP or consultant

    4) The government claim DLA needs reform because so many get lifetime awards. However, they announced a few months ago that they won't even be testing those with indefinite claims at all until after the next election. Indefinite awards make up nearly 70% of all DLA awards and the government claim over and over that it is this group who have been "left to languish" yet they've decided to do nothing about it at all.

    5) DLA does not act as a dis-incentive to work, far from it. 60% of disabled people in the UK work.

    6) Fraud is just half of one percent as consistently proven by the DWPs own figures. Yet the George Osborne announced a 20% cut back in June 2010 before a single assessment had taken place.

    7) DLA saves the taxpayer many times the amount it costs. Study after study shows that sick and disabled people spend their DLA with amazing efficiency. If DLA is withdrawn, the need doesn't just go away and costs are simply transferred to an already crumbling social care service or the NHS.

    8) The higher rate mobility criteria was slashed from 50 mtrs to 20 mtrs without consultation or warning, meaning that over 600,000 people will no longer qualify for the benefit. These are people who can barely walk at all - the most vulnerable the government claim to be protecting.

    9) In many cases, DLA is not even paid to the sick or disabled person, but goes directly to social services for care or to the motability scheme for a car modified to suit particular impairments

    Please join us in countering the propaganda and mis-information our government are churning out today. Feel free to use these facts in any way. Every challenge shows a few more people what is really going on in their name.

    Friday 5 April 2013

    Laugh at your enemies? Just what the Dr Ordered

    If, like me, you're still furious with George Osborne for :

    A) Desecrating our economy
    B) Parking in disabled bays
    C) Suggesting a brutal, murdering, child killer was the product of an over-generous "welfare" system

    I'm posting these 3 short clips to cheer you up. Do click on the Twitter, Facebook and Google buttons below this article and share them with your friends. It's been decades since a group of people in the UK needed to laugh as much as vulnerable, sick or disabled people need to laugh right now



    And finally, last but totally not least...

    Enjoy :)

    Thursday 4 April 2013

    Open Letter to the Telegraph

    Dear Daily Telegraph,

    Yesterday, you published an article by Allison Pearson, ("Mick Philpot, a good reason to cut benefits" 3rd April) based on a press release issued over the Easter weekend by Conservative Central Office. (NB :NOT the DWP who are barred from issuing overtly political and partisan press releases)

    Your original story (900,000 choose to come off sickness benefit ahead of tests, 30th March) claimed "828,300 sick or disabled ppl had chosen to drop their claims rather than face new tougher assessments (my italics). That claim simply isn't true.

    What's more, it wasn't true back in April 2011, either, when the gov first made the same false claim.

    A little while later, The DWP's themselves issued figures showing a huge proportion (94%) of claims were dropped because the person got better or went back to work. They dropped their claims because they were honest, not because they were dishonest!!

    There is a three month qualifying period for out of work sickness benefits. (ESA/IB)

    As you can imagine, most people need a little help to get through a nasty illness or accident at some point in their lives.

    Maybe a weekend rugby player who snaps his collar bone resulting in 2 months off work, or the Mum who needs a sudden hysterectomy and time afterwards to heal? This will happen to every last one of us at some point.

    But you can't get help when you really need it any more, in those first terrible weeks of pain and recovery. Now you have to wait 3 months before you can apply.

    In that time, for all but the most unfortunate, bones and scars will have healed and the person will be back on their feet again.

    With no point in continuing the claim, people do the honest thing and let the DWP know they no longer need support.

    This information is all in the public domain and all proven by evidence. Yet the government send out a politicised press release over the Easter weekend aimed at mis-leading the public and encouraging an entire nation to mis-trust one of the most vulnerable groups in society.

    Worse still, you run the story unquestioningly, repeating claims that had already been proven to be completely untrue.

    Today, referring to the same misleading conservative HQ press release, Allison suggests a child murdering abuser (Mick Philpott) is somehow representative of the same group of very unwell or disabled people

    "That’s nearly a million Britons who were taking the Mick. And they didn’t stop until they were about to be found out."

    The aim of these press releases and subsequent articles in your paper is clearly to demonise people with severe illnesses or disabilities, to imply that nearly a million of them were dishonest scroungers when exactly the opposite is true and to make a wider public resent and judge a group of people who most need their support.

    If its simply headlines you need, I can give you plenty : "140,000 incorrect sickness benefit decisions legally overturned" or how about "Disability testing centres inaccessible to disabled people" or maybe "Sick and disabled ppl to lose £28.3 billion - nearly a quarter of the entire deficit."

    I can barely bring myself to ask why a government in 2013, here in the UK, would feel it can repeatedly issue information they know to be untrue in order to vilify people with conditions like cancer or MS or cerebral palsy.

    But that a national newspaper can support such a dangerous campaign, or be complicit in misleading the public to believe the worst of those most in need? That's truly shocking to me.

    When stories are this sensitive and affect so many disadvantaged people, we have a duty to get it right. If these welfare "reforms" are just, the government should have no need to mislead or misinform.

    But as Lord Leveson's report so recently showed, it's even more important that any information making claims about people who, in many cases, won't even be able to respond for themselves, is closely scrutinised and balanced.

    We can't afford to get this wrong. History will judge us on the success or failure of these reforms. How sensitively were they handled? How accurate were they? How many suffered?

    Finally, lets remember this is not simply a minority issue. A huge 3.4 million people with long term illnesses or disabilities will be affected by these changes to social security, not to mention their families and carers. The rest of us will all need a little support at some point.

    Approaching reform with a degree of honesty and sensitivity is surely the very least sick and disabled people can expect?

    Wednesday 3 April 2013

    My "Bedding Out" video

    Following on from the guest post by Liz Crow "Bedding Out", here's my version. It's remarkable how truly vulnerable just exposing my everyday life made me feel.

    We fight, we strive, we press on, we paint on a smile so that no-one ever sees us like this. But perhaps now, in 2013, it's important that they do. Do take part with your own version of Bedding Out

    Tuesday 2 April 2013

    Tory Central Office MORE dishonest than DWP???

    Dear Conservative Central Office

    Despite appearing on Sky News (twice) LBC Radio and BBC Radio London when I should have been enjoying a wonderful roast lamb dinner my husband had slaved over on Easter Sunday, I'm still awfully cross.

    You released statistics to the press on Sunday claiming that

    "878,300 people claiming incapacity benefit - more than a third of the total - have chosen to drop their benefit claim entirely rather than face a medical assessment, new figures have revealed."

    This clearly implies those 878,300 people felt their claims may be unjustified. 

    What's more, they're not NEW figures, they're old. You released exactly the same nonsense a few months ago only to be proven wrong by your own stats showing 94% of people either returned to work or got better and - as they should - dropped their claims voluntarily. 

    May I also ask why YOU "released" (or as we now see "re-released") these figures? Why not the DWP? Since when did No. 10 decide to make very unwell or disabled people look dishonest and lazy over Easter? Don't you see how dangerous this is? How low you are stooping to force through "reforms" widely described as "unfit for purpose"? Reforms even Professor Harrington, your own independent adviser accepts are still failing thousands?

    If you believe in the "fairness" of your reforms, have the courage to stand by them. If you can only distort the truth, asking the public to judge some of the "most vulnerable" you pledged to look after on false implications, on statistics your own figures show to be entirely misleading and inaccurate, you are unfit to govern. Actually, you are inhumane. 

    Never has a case been so clear cut. The two simple links in this article prove you used data to incite mistrust of a vulnerable group. 

    If there's any justice, this post would go viral and you'd be forced into an apology by Midnight. 

    Sue Marsh

    Want to Shout about ESA? Here's your chance #ESAendgame

    Guest blog from Atos Stories

    Face it. The ESA mess has been going on long enough. Atos have been carrying out a test that terrifies sick and disabled people for long enough. The government has been pretending it's enabling people for long enough. So we were delighted to see our friend Sue Marsh lay down the gauntlet and say enough IS enough. We need to end the pain and fear of ESA once and for all and the ESA Endgame campaign might just do it.

    We always wrote our plays as a way to educate people about Atos, the DWP and ESA. And we've had somesuccess. Over 3000 people have read Atos Stories, The Atos Monologues and Atos Street Theatre. 

    The Monologues have been performed in Leeds, at Greenbelt and podcasted by My Life, My Choice. Despite having Newham Council cancel their 1st performance, Act Up are still planning on putting on the show.

    But now we want to try something new. Something you can ALL get involved in. We have three versions of the play:  Atos Stories, The Atos Monologues and Atos Street Theatre and we’d like to invite you to put one of these versions on in your community.

    You don't have do the whole thing, you could do a scene, sing a song, read part of the monologues. You could add your own stories or link with the stories published by Sue on her blog under the #esaendgame hashtag. But the idea is that everybody Acts Against Atos on the same day across the country. (Date to be confirmed)

    You can do this anywhere, at a library, community centre, shopping mall,  theatre, your local Atos office. Wherever the most people will be able to hear the message. So if you are an actor, or if you are not, if you are disabled or sick or not., but you can read a part,
    sing a song, act a scene and you want to get involved. Let us know.

    You can download the documents here
    If you want to take part, email us at Tell us who is taking part, where and when and we'll put it on our blog. 

    Please try and get a record of the event, and we'll post a link.

    By Acting Together, we CAN end the pain of ESA now!

    Liz Crow, Bedding Out

    I LOVE this project. In a few minutes, I'll post my own "Bedding Out" video for you all to see. It's remarkable how personal it feels, how vulnerable I felt recording it. And that's why I think this project is so important.

    "Bedding Out against the onslaught

    At the beginning of April, I am moving body and soul into bed for 48 hours round-the-clock, exhibited behind a red rope barrier in a public art gallery

    Bedding Out is a response to the welfare benefits overhaul, which threatens many with poverty and with a propagandist campaign that has seen disability hate crime leap by 50%.

    The work looks at the way I live a life in two very separate parts. There’s a public self that tries to be outgoing and animated and changing the world, and most people assume because that’s what they see of me, that’s how I am in the rest of my life. But then there’s the private self, which wins no friends or accolades, in which I spend most of my time at home, a lot of time lying down and quite a lot in bed.

    This is the self that I have become very expert in concealing. And whilst that has kind of worked for the past 30 years, in the face of benefits changes, it no longer does. Instead, this new system demands that I reverse myself, parading the private me to justify support.

    In the performance I take this private self and make it public, performing my bed-life. Since the public me is so carefully constructed, this is a kind of un-performing of my self. I want to make visible a twilight existence shared by thousands of us. But even more, I want to show that what so many people see as contradiction - what they call fraud - is just the complexity of real life.

    Bedding Out can portrays the human story set within its broader social context. The work is not just about me, but is a symbol for the thousands of us who live a bed-life. There is something about playing it out in a public space that goes deep to the heart of what that life means, setting it overtly within the present, very difficult political, climate.

    At points throughout the performance, members of the public will be invited to Bedside Conversations, gathering round the bed to talk about the work, its backdrop and its politics. Previous conversations ranged far and wide across benefits, newspaper propaganda, hate crime, art as activism, and much more.

    You can get a flavour of the work from ‘Reflections from the Bed - a short audio-visual slideshow (with captions) that tells more about the work and why it feels so necessary.

    And because, at last autumn’s version of this performance, I was contacted by several people delighted that the work was making them more visible, but too ill to attend in person, this time, Bedding Out will use social media to involve absent people into the conversation.

    How you can get involved

    Via the web:

    Watch Bedding Out! The performance will be live streamed throughout the 48 hours at

    Bedside Conversations (duration 40 minutes) will be live streamed with audio, BSL interpretation and live subtitles:
    Wednesday 10 April 2.30pm and 6.00pm
    Thursday 11 April noon (via twitter) and 3.15pm
    Friday 12 April 10.15am.

    On Twitter:  @RGPLIzCrow #beddingout

    Follow the work – and join in! We have tweetmeister Dawn Willis (@quinonostante) tweeting in the lead up to the performance and in residence throughout the 48 hours. She is tweeting live updates on the performance, audience reactions, issues of the day and Bedside Conversations, and responses to individual tweets, bringing people into the bigger conversation and encouraging them to make the project their own.

    Tweets will be fed into conversations and displayed live in the arts centre alongside the performance.

    There will also be an all-twitter conversation on the Thursday at noon, with over 50 people already signed up to take part.

    By text:  07784 899514
    If you’re not on twitter, you can text us. We can upload what you say to twitter. If you want to remain anonymous, just type ‘MySecret’ before your text. (Outside the UK take away the 0 and add 44 to the number).
    In person:

    If you’re in Salisbury, come to the Arts Centre! Opening hours and access information at:

    My hope is that people will come to see Bedding Out, pitch in via social media, use it to talk to people new to the issues raised, use it beyond the gallery space and after the performance is over. I hope the work will be part of the much larger conversation of disabled people, supporters, the Sparticus campaign, DPAC, Black Triangle, UKUncut and others, our combined voices reaching more people and generating public outrage to force a change in benefits reform and cultures of work towards a system that is humane." | @RGPLizCrow | #beddingout | 07784 899514

    Bedding Out
    Bedside Conversations

    Schapps proven utterly wrong

    As I spent most of my Easter Sunday explaining to Sky News, LBC Radio and BBC Radio London why the ESA figures Grant Schapps had released were inaccurate, it seems only fitting I cross-post a definitive rebuttal from Declan Gaffney here.

    Shapps was wrong, the figures WERE the old one's already proven wrong months ago and he can apologise any time he likes. Declan blogs at and frankly, a quick read through ALL of his posts shows just why this is a battle we MUST win though the odds are continually stacked against us

    "I've invited housing minister Grant Shapps, via Twitter, to correct an inaccurate statistic which he promoted in several print and broadcast outlets over the Bank Holiday weekend.
    The claim appeared in these words, from the Press Association on Saturday 'More than a third of people who were on incapacity benefit dropped their claims / rather than/ complete a medical assessment, according to government figures. A massive 878,300 chose not to be checked for their fitness to work under tests brought in when the benefit was replaced by Employment Support Allowance in 2008.' The Guardian states 'Shapps issued a news release over the weekend claiming that 878,300 people claiming incapacity benefit – more than a third of the total – had chosen to "drop their benefit claim entirely /rather than/ face a medical assessment".
    I've emphasised the phrase 'rather than' because that is where the inaccuracy lies, and as it occurs in both the PA and Guardian stories, it is presumably included in the press briefing document issued by Mr Shapps (which I haven't seen). What is being asserted is not just that a certain number of people dropped their claims, but that they all did so for a specific reason - in order to avoid assessment. This assertion is clearly inaccurate.
    Every month, about 130,000 people leave Employment Support Allowance (ESA). Of these ESA leavers, about 20,000 have not yet undergone a Work Capability Assessment (WCA). There is no mystery about this: claims for ESA are counted from when people are issued with an ESA 50 form to fill in, and there is an inevitable gap between the form being issued and the Work Capability Assessment. Indeed according to Nomis there are currently 488,000 claims in the 'assessment phase' of ESA, meaning that there has not yet been a decision on entitlement.
    Obviously, during the gap between the initial claim and assessment, many people will see an improvement in their condition or will return to work (with or without an improvement in their condition), and DWP research has shown that these - and not a wish to avoid assessment - are the overwhelming reasons for people dropping their claims before the assessment . For those familiar with the sheer scale of monthly on- and off-flows for ESA and its predecessor, Incapacity Benefit, these findings are unsurprising.
    The same research found that in 'only a handful' of cases had people who had dropped their claims failed to attend a Work Capability Assessment. For 'a small number of claimants', receipt of an invite to a Work Capability Assessment triggered them to contact DWP to withdraw their claim. Note that even in this small number of cases, there is no reason to believe that the WCA invite contributed to the decision not to pursue the claim. People who drop their claims may or may not notify DWP of their decision- which means they may continue to be counted on the ESA caseload for some time after their decision.
    Thus to claim, as Mr Shapps seems to have done, that everyone who leaves ESA before assessment is leaving in order to avoid the assessment is patently inaccurate.It is not just that he has no evidence to back up his claim. There is evidence, and it shows he is wrong. He should issue a correction and apology.
    [Update: Grant Shapps is of course the Conservative party chairman, not the housing minister. That means that his inaccurate claims were made in a party political role, so they are not subject to the rules governing ministerial use of statistics, although this would presumably be the case were his claims to be repeated by a minister. There's been some confusion about the source of the 878,300 figure: it comes from table 1 in this release and, as I should have said originally, represents all ESA claims which ended before assessment between October 2008 (when ESA was introduced) and May 2012. Finally, among those who should have known better who uncritically repeated the claim, Tim Worstall deserves special mention simply because he accused another blogger, and indeed all 'lefties', of being 'lying scumbags' while failing to locate, let alone understand, the original data.]