Sunday 30 March 2014


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

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

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

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

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

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

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

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

Later in the day, they released an official statement

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

Did you spot the glaring omission? 


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


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


This is continents away from a joke now. 

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

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

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

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

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


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


Wednesday 26 March 2014

Beyond Barriers

This is quite exciting.

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

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

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

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

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

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

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

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

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

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

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

Again, please email submissions to with the title "Beyond Barriers".

Monday 24 March 2014

Magic Mondays

As you know, Magic Mondays is a way of trying to convince others - people who may not be familiar with the many social security myths - that things are not as they seem. If we could all just persuade one person a week, we would have made a very significant impact by the 2015 election.

Last week, I said I would try to convince some Conservatives on a prominent blog. After 2 hours I had 42 negative ticks!!

BUT. By this morning, I have two open minded right wingers who have promised to read the links I posted and even a suggestion that the blog might be interested in hearing a little more for their manifesto suggestions. We found common ground and put aside our differences, focussing on the things we agreed over.

We CAN do it. It takes patience, perseverance and a little knowledge. We all have that in spades. An acceptance that others aren't evil, they just think differently to us. People are people and they have Mums and Dad's and children, just the same.

Please, do what you can, when you can. Email a friend you haven't heard from for a while and start a conversation. Have a chat with your GP at your next appointment. Tell the baker or the milkman - you just never know when it might make a difference.

Sunday 23 March 2014

Benefit Caps

Before I type another word, I'd like to make it clear that I think the idea of an overall benefit cap is ridiculous.

When times are hard, say during recessions, you actually want to spend MORE on social security. It boosts the economy and is the best way of making sure money is spent locally and directly. When times are better and jobs are plentiful you can reform and cut back.

So the very idea of an overall benefit cap is utterly counter-Keynesian and, well totally pointless really.

I'd also like to make it clear that I'm dripping with contempt that Labour are going to support an overall benefit cap, not because they believe it's a good idea or because it fits in any way with a Labour concept of how to run economies. Let's be very clear : The ONLY reason Labour are going to whip their MPs to support it is because they think it would be electoral suicide NOT to. I detest political decisions that abandon all conscience, sense and principle, heaving a few million people onto the scrapheap of life, just to placate the Daily Mail

However, I do think it's important to allay a few fears over what is actually proposed. There are two benefit cap policies and I believe they are merging into one in the justifiable outrage. This might be frightening people unnecessarily, so I'll try to clear it up here. 

The benefit cap that will be approved on Tuesday is an overall benefit cap.  It WILL include DLA (disability benefit) and ESA (sickness benefit) but WON'T include JSA (jobseekers allowance). Osborne announced that it would be set at £118 billion next year. It is a common myth that sickness benefits increase during recessions. They don't and nor do disability benefits. So as long as the overall cap is realistic, then including them is not as horrific as it might sound. Jobseekers DOES increase during recessions (obviously) so excluding it makes sense. (Excluding pensions has no logic and is simply shameless vote maintenance by the Tories)

The second policy refers to a household benefit cap. The cap will be 26k which the coalition argue is equivalent to the average household income. Of course it isn't, because families brining in 26k are likely to get a whole host of tax credits, child benefit and housing benefit too, but let's not spoil a good bit of spin eh? This is also an utterly ludicrous idea, taking no account of regional variations or individual circumstances. But DLA and Support Group ESA ARE excluded from this. This also makes sense as those totally reliant on the state for all support are likely to exceed a 26k cap in almost all cases.

So to sum up, the policies are ridiculous and Labour supporting them is shameless and weak, but I don't think sick and disabled people will be unduly hurt by them.

There is a caveat of course : Many people living with very significant impairments DON'T qualify for  DLA and DON'T get assessed as needing to be in the ESA Support Group. As the assessments get ever more stringent, this gets more and more common. These people WILL be affected by both policies as exemptions won't apply to them. But it's OK. Both Labour and the Conservatives seem happy to pretend they don't exist.

UPDATE : This rather good post looks into my claim that 26k is not the average income further, making the point, that this is really ll about punishing children for the decisions of their parents. …

Also, James Bolton (@JamesABolton on twitter) makes the point that with 2% leeway built in either way, and no penalties should governments exceed the cap, the whole policy is just designed to sound tough on "scroungers" whilst in effect, having no teeth at all. If the cap is exceeded and people still have valid claims, they must be paid by law. 

Friday 21 March 2014

Ask not what the UN can do for you, but what you can do for the UN

When we first heard that the UN would be reporting on the progress the UK has made at implementing the UN convention on the rights of people with disabilities, your response was overwhelming.

In a way I've rarely seen before, people saw UN involvement as a once in a lifetime opportunity. More, they saw it as a lifeboat, not waving but drowning, hoping the wider world will see.

At a time when sick and disabled people feel more attacked and less heard than they have for generations, we all seemed to cling to this opportunity. I think it had become clear that our own UK government would compromise on nothing. They seem the least able to see or hear that we exist at all.

I asked people to email me with their stories to submit as case studies and my inbox exploded with fear and misery. I only asked very specifically for stories from those affected by the 1 year time limit of ESA, as this was the area I was going to focus on. Yet I got so many replies, it took me three weeks to reply to each one individually.

The pain in those messages was palpable, urgent, frightened. Just reading their suffering drained me as story after story flooded in. I practically got Stendhal syndrome from all the gasps of shock. Weeks later I still felt very down and defeated.

A thousand inbox whispers became a mighty roar. Together they painted a picture of the UK in 2014 that is beyond the comprehension of most.

The day I posted the call for evidence, a friend from one of the major charities DMd me, suggesting it might be unfair to big the news up too much as the UN couldn't actually change anything. They have no jurisdiction under UK law and she worried it might be cruel to give false hope where none exists.

Unless you're a campaigner, her lovely advice and care for people might seem logical. Why put so much energy into something that can't actually make our lives immediately better?

But I've learnt the power of hope. From the day I launched this blog, we've all had the most impact when we shout together. However, sick and disabled people have shouted and shouted, endlessly and urgently, yet no matter how we cry out, no-one could hear us. As we sank out of view, few even knew to wonder where we'd gone.

I think that even the most pragmatic of us had all learnt very clearly by then that this government were not willing to compromise or listen in any way at all.

Like any minority, if all you have is the hope that, one day, things might get better and this whole sorry mess will end, just being heard at all is incredibly cathartic.

Over and over, people begged me to tell their stories, begged me to amplify their individual voices into something that could be heard. I think this UN report might be the most important thing we've done so far. The number of people who asked me to keep their stories anonymous told me all I needed to know about the climate of fear sick and disabled people are currently living under.

The UN have been very specific about what they need :

The "shadow" report needs to be succinct. They only want 30-40 pages, which might sound like a lot, but in report terms it's very tight indeed They need people to produce a 30-40 page report that is well referenced and any statement that makes any kind of claim has to be backed up with evidence.

They want one united response that disabled people in the UK can support and get behind. 
Several groups have started their own reports, but it might be that no one report can say everything. Clearly, groups could still submit their own work independently, but it's vital that we also produce one overall submission as an official UK shadow report that we can all rally behind and support

All claims must be supported with evidence. The examiner has only got 10 days later this year to finalise his report. This means that the more groundwork we can do for him and the more evidence we provide in advance, the easier his job will be and the more impact his report can have.

Of course the overwhelming problem is what to leave out, not what to include. With so little space and 50 articles to the convention, it's imperative to make sure that as many issues as possible are included, hence prioritising a few of the most urgent ones. Agreeing what those issues will be is vital.

Often a collective endeavour is more valuable than the sum of its parts. Very occasionally, an opportunity comes along that is so important, so urgent, that we owe it to ourselves to come together and present the strongest presence we can. Sick and disabled people have an unprecedented record over many decades of being able to do just that at the really crucial times. Unlike other campaigners, we never quite allow our coalitions to fall apart when co-operation is vital.

I'm really excited about seeing the finished report that's produced in the end. I know all of you will be too. I know how desperately you want every last word to be used carefully, that not a single one is wasted. We have a duty to do our best for all disabled people in the UK, for everyone's stories to be heard.

Tuesday 18 March 2014

Goodbye and Thank You Tony Benn

I know I'm a little late with this, but In the same 12 months as I lost my Dad, I can't let Tony Benn pass without saying goodbye.

Both men were very similar. In the end, they even looked alike. Benn lived to 89, my Dad to 91 and both were born in London within just 3 years of one another. Both joined the RAF and fought in the second world war and both were lifelong socialists who never knowingly compromised themselves. Ever.

But there the similarities end. Benn was born the son of a Lord and politician, my Dad the son of an Irish drunk. Benn to the aristocracy and stately homes, my Dad to the tenements of Battersea and hunger. Whilst Anthony Wedgewood Benn was sent off to the prestigious Westminster school, my Dad grew up in Borstals.

My Dad lied about his age to join the RAF, just to get way from hunger and crime. Benn entered officer class and flew the very planes my father kept in the air.

How very strange to think of their lives lived in parallel, never quite colliding. Or did they? In a bizarre twist, my Dad's talent was somehow allowed to override his class and he played cricket at Lords for Surrey Colts. The borstal boy sat in curiosity as great Lords lectured him on Britishness and fair play. Concepts as alien to the little street boy who lived by his wits as stability and wealth. He often quoted the head of the MCC who warned them severely, "May I never see the day, dear boys, when cricket becomes a sport for professionals". The tough little boy that nobody loved found the whole experience strange and remarkable, like something unreal.

Meanwhile, Benn, just a few miles away, found himself at the very heart of that elite, alien world and came to reject it. How did those two men live lives so different, yet so alike? One so deprived, the other infinitely privileged who chose the same paths and ended up at the same destination?

Having lived my life with one and admired the other since I could think, I think the answer is an unshakeable confidence.

My Dad had to create his. He had absolutely no-one to shape him, so was able to shape himself. Once he decided who he was, he never ever wavered. He'd seen injustice we can only imagine. But much more remarkably, Benn had to have a mind capable of merely conceptualizing the experiences my Dad had actually lived. He could only imagine the deprivations and hardships, but gave his life to easing them nonetheless.

It was the war that sent away a generation of rich men and poor men and sent them back just men. Men that bled, men who shattered into a thousand pieces under fire, men who loved and felt fear and wanted better.

When they came back from that massacre of potential they'd learnt a great truth that progressed mankind further than at any time in history. They had learnt that when they all pulled together, just sisters and children and fathers and sons; when everyone had enough to eat and everyone had work in a common shared purpose, we were happier and healthier than we'd ever been.

We learnt that if we could spend money killing, we could spend money building hospitals and schools and houses.

The war that ripped families apart, gave birth to the UN and a promise never to repeat the brutality of the past. It gave birth to the healthiest, wealthiest, best educated generation of Britains of all time. The "baby-boomers" of today know that they saw the best years. It made us all socialists, Lord and pauper alike. For a while at least. And our greatest triumphs, our proudest moments came from the debris of that failure.

My Dad died in early May,  and at the end of June I found myself speaking on a stage at Glastonbury, invited by the equally unshakable Bill Bragg. I spoke on panels for the first two days and on the third, Tony Benn himself was a guest. I watched him from backstage, transfixed. That familiar pipe in hand, rousing the crowd to hope and believe in ways they'd only heard their parents speak about. He was old, gaunt like my dad had been. He thought through long pauses before he spoke, just as my Dad had done.

After the session, I went to the green room to get a cup of tea. Tony Benn was sitting at a table in the pretty marquee, pipe in hand. As I went to the tea urn, I recognized the girl next to me. By huge coincidence, she had stood as candidate in my neighbouring true-blue stronghold of East Worthing! It was Emily Benn, Tony's granddaughter and carer.

We did the squealy "what a coincidence" thing girls do. I gushed a bit about her awesome granddad and she invited me to come and meet him!!! You know those first moments, where as soon as a chain of events begins, you just know something magical is going to happen? You do that quick "snapshot" in your head. "Remember this, you're Billy Bragg's guest at Glastonbury, which is mind-glowingly awesome enough and now, you're walking towards TONY BENN!!!!" *breathe* *breathe* *don't forget to breathe*.

And suddenly, there he was, sitting right next to me. Anthony Wedgewood Benn! And the pipe. And he was delighted to meet ME! Emily told him all about my campaigning for sick and disabled people and how we'd taken on the DWP.

The man opposite me was very old. He was measured. He looked away at a better place just past your shoulder. Just like my Dad had at the end.

The magic held us fixed and Emily said she had to make a call and she'd leave us alone for ten minutes!!! Somehow, the rest of the marquee stayed empty. No-one interrupted to shake his hand, no-one came in. It was just me and Tony Benn and the pipe in a marquee at Glastonbury with mugs of tea. And HE wanted to know more about MY campaigning!

Still we sat there suspended, uninterrupted. He asked about my disability and I told him I had crohn''s disease. He thought for a moment and recalled someone he knew with the disease. He sympathised.

I told him about Spartacus and the campaign and the Spartacus Report and how we'd all done it together. I knew it would make him happy and that made me happy. He didn't say much for a while. I didn't know whether to babble on nervously or just sit quietly a bit. With Dad so recently gone, I'd become used to these conversations, I was still comfortable in them, accustomed to the pauses.

So I waited. After a moment he looked at me and said in that unmistakeable mumbling drawl "Yes, these assessment changes must be very difficult for conditions like yours, never the same from one day to the next." For a second, that flash of brilliance pulled me up at is it had pulled up others all his life and I saw the brilliance, the razor-trap mind that immediately went to the very heart of the issue, the heart of why I fight.

I told him how much I admired him and that he had always been my Mum's very favorite public figure. I told him how much he reminded me of my Dad. I told him I'd never forget sitting in a tent at Glastonbury with him for a few quiet moments. He was tired, watching that place just past my shoulder again, and though I had a thousand things I'd have loved to say and ask, I just sat. After a while, I asked him if he needed anything, could I get him more tea? He smiled, but seemed almost too tired to answer. Then Emily was back and I said goodbye.

The bubble burst and Dave was there and that legendary man was gone.

So goodbye "Tony" Benn. Always his own man. Always our man.

Monday 17 March 2014

Magic Monday

My Magic Monday for today is to attempt to confuddle right wingers on a prominent Conservative comment thread. I shan't say which or the trolls will simply swamp any attempt at genuine debate.

But however hopeless you might all think this one is, if just one thinks "hang on a minute, she might have a point" Then my Magic Monday will be complete.

Who will you convince?

**UPDATE : Just 2 hours in and I have a -41 approval rating. Impressive, no? But only one has to tick up......

Sunday 16 March 2014

Laptop Heaven

Thanks to the quite extraordinary response to my "Cry For Help" post, I'm typing this from a beautiful, robust new MacBook.

Of course, there's no doubt at all that I chose something very nice indeed to own. It's hard not to be a bit excited, though guilt quickly drowns that out. I researched and read reviews and generally annoyed Steve Sumpter (@latentexistence) all through his trip to the barbers.

But as I'd eaten through two cheap laptops already in the Spartacus cause, I desperately didn't want to be back in this situation, in debt and unable to do what I have to do just a year or two on and wanted to make sure that whatever I got worked for me - but mostly for all of you. I needed something light - as light as it could possibly be so that I could take it to meetings with me. I'm very weak. I needed something with very long battery life so that it would last all day in London without me having to carry a heavy charging cable around. I needed something very simple to use that was as impervious to viruses and malware as possible. I'm not very techy and can't fix things when they do go wrong. Finally, I usually have my laptop on 16 hours a day with up to 30 documents open at once. I often multitask, doing 3 or four articles or pieces of work at once, so the machine I chose had to have excellent capacity.

The response to the fund was overwhelming. Within just a few hours, hundreds of you had given what you could and the target was met and surpassed. I'm honoured that that would never have happened if people didn't believe in me and what I try to do. Of course, there will always be a few dissenting voices. And I know how that feels. I've put everything into campaigning these last few years - my energy, my money, my family time and my health. For four years now, I've done it unfunded and without asking anyone for anything.

Sometimes I've seen others fundraise and it's hard not to feel a pang of resentment.  Most other bloggers have a donation button on their blog or advertising, but I resisted those options. I felt that a donation button would mean that any donations were not public. No-one would know what I get or when or from who. As for advertising, I looked into it extensively, but the good old benefit trap caught me, as it tends to do.

If I have advertising on my site I have to make at least as much as I currently get in ESA and that amount must be reliable. What happens the next time I spend months in hospital with no ESA? What happens if the revenue falls some months because I'm too ill to blog?

I would hate people to think that I haven't looked into absolutely every avenue I could think of and more before I would dream of asking for other people's money.

But when those trolls who know nothing about me say "If you can go to all those meetings, you can work" it is worth reminding people who haven't been reading my blog from the start, just how ill I am. My crohn's disease is very severe and I get no remissions. I've had 9 major operations to remove 36 tumor like blockages. You all have 4 metres of bowel, I have 1.5 left. Below a metre becomes "unviable". I've resisted asking what that means. I weigh 6 and a half stone and am constantly malnourished. I have to take most of my meds by injection (which I give myself) as I can't absorb them properly and I average about 5 weeks per year in hospital.

My doctors would like me to give up and be fed through a tube into my central vein while I wait for a bowel transplant. I vomit regularly - sometimes 10 or 20 times a day.

So how CAN I campaign as I do? Sheer bloody mindedness. Yes, I'm often in pain beyond most people's imagining. Sometimes I give speeches bombed out of my head on opiates, hoping no-one will notice. I've run campaigns, written for national newspapers and given radio interviews from a hospital bed. If I'm too ill to travel, Dave makes me a bed in the back of the car and I sleep my way around the country. It's incredibly tough - in fact I can't think of a word to describe what it is.

But it's my choice. I don't ask for anyone to pity me, in fact those that attempted it would get incredibly short shrift. When my kids moan "It's not faaaaaaair" about something (as kids will do) I say to them all the time "Life's not fair, don't expect it to be."

I can sit home fighting to stay alive or I can push my self now and then to do something valuable at the same time. I'll feel just as ill whether I'm sitting through a meeting in Parliament or watching The Waltons from my beanbag. After 30 years of a serious chronic illness, I really did decide that "you can get busy living or you can get busy dying." I choose to spend the limited resources I do have trying to change what I see as a desperate wrong. However ill I am, there are so many so much worse off than me. People who can't communicate at all, who have no idea what is being done in their name. People who can never leave their homes, people who have nothing at all to buy food with from week to week.

When we first produced the Spartacus Report, you all came together in a quite remarkable way. We decided, back then, together, thousands of us, that we needed to be heard. We dared to hope, we put our money into producing something that might just win us a place at the table. It wasn't for fun. It wasn't to show how clever we were, it was to say "We're here and we desperately need you to listen to us.  We won't be spoken FOR any more, we want to speak for ourselves. We want a say in this discussion that is deciding our futures"

You trusted me to use those funds wisely and produce something powerful, and we did.

But we were victims of our own success. Perhaps most days it doesn't feel that way as the steady stream of dreadful news and horrific stories overwhelm us. But we were. Politicians listened and they respect us. They invite us to their round-tables and conferences. The media respect us and ask us to speak on issues relevant to disability and social security. Other groups and charities respect us and ask us to advise them or speak at their events.

And from that original frenzy, it never really slowed down. In fact it built and built. More reports were produced by other Spartacii. More subjects covered. More exposure for our issues. The media started to write about our fears more and more. Politicians started to blink into the light and ask for more information.

At first it was a meeting now and then or a speech to a conference every few months. But as the momentum has built - and momentum is the single most important thing in any campaign - so the demands have grown. Of course I'm not the only one to go to these events, but overwhelmingly, people want "Sue Marsh" because that's just the way things go. And "Sue Marsh" finds she just can't turn down things that are hugely important. How can I say no to meetings at parliament or the Lords which just might make a big difference? How can I turn down the chance to let thousands more people know at a rally or demo? How can I refuse to write articles or give interviews? When a chance to be heard was what we fought so passionately for? 

So for fours years, I've just said yes. However ill, however exhausted, however poor, somehow, I've got there, usually with the unflinching support of Dave and my boys who have never once in the whole time said "we can't afford it" or "don't do it you're just too sick". They know me better than that.

I remember a few months ago, my Mum asked, as most ask repeatedly "When are they going to start paying you for all this" Without breaking his stride on Minecraft, my 5 year old just said "Naaaaaan, she just has to do it, it's not about the money".

And so despite sorting out my own benefit trials, we stayed poor but fairly happy. But now, after all this time, people ask me to do more and more. I need more and more physical support to get anywhere at all. I can't manage public transport on my own any more, doubling train fares, I use a wheelchair and need someone to push me where I didn't before. That means someone ELSE giving their time and their energy unpaid.

And expenses are not paid when they should be. Not only do people expect you to do almost everything for free, they then take months and months to reimburse you for the cost of it. So out of a relatively tight benefit income (though I never forget I'm much luckier than most as I get adequate support and Dave works) we were constantly "subbing" huge corporations, leaving us hundreds of pounds out of pocket every month. Not now and then, every month. I felt it was my contribution all the time I could do it.

But since last year, I'd had to borrow money from my Mum and the amount kept creeping up. I couldn't pay the rent one month and had to put it off, leaving us playing catch up constantly. We were living day to day and often there was no money for the kids to go to their clubs or get new shoes. I was robbing Peter to pay Paul all the time.

Still I didn't ask for anything from anyone. I became the queen of blagging, usually finding a way to get my trips funded by making other appointments for the same day if I could. But however resourceful I was, I just couldn't get it all paid for.

Regular readers will know I tried to step away. I was so exhausted, so drained and increasingly poor, I thought it might be the best way. But the invites kept coming and the attacks were undiminished. I found I couldn't stop even if I wanted to.

Around Xmas, the fan packed up on my laptop and after about 30 minutes it would shut itself down mid blog or comment. I tried my best to ignore it and carry on. I certainly had no money to get it fixed. I'd already had it fixed twice at a cost of £120 and I just didn't have it. The hard drive had been on it's last legs for some time. It kept doing all sorts of odd and infuriating things. Then, I got malware and despite using Malware Bytes and numerous other attempts to sort it out, it was a bad one and just kept writing to my hard drive increasing the ads and slowing down the system to a standstill.

For a month, I'd been trying to blog and write articles from my iPhone, but the typos were ridiculous and it took forever. But I was in a catch 22. By the time I gave up and asked you all for help, I was owed £360 in expenses and owed hundreds to my Mum. I couldn't afford a new laptop or even to get the old one fixed. If it was just the expenses, I might have struggled on, if it was just the laptop I could have saved for a new one. But both seemed to leave me no way out.

Someone said to me on Twitter "You don't have to explain Sue" But I do. I absolutely do because this is your money and your cause and time and again you trust me to keep fighting in your name. Of course not every disabled person sees things as I do, as we do. I wouldn't dream of thinking for a moment that I speak for all sick and disabled people. But the thousands who read this blog every day seem to support what I say and try to do. If they didn't they wouldn't want to help me at all, certainly not with their own precious funds.

All the while people want me to carry on doing this, I'll try to continue. All the while politicians ask us what's wrong and how they could help, I'll carry on trying to explain to them. All the time people ask me to speak at their conference or festival or event, I'll do everything I can to get there.

I put £120 I had saved towards the MacBook (not much I know but the best I could do) and once I've paid the debts expenses got me into in the first place, there should be £500 left for future trips. I have an appointment to set up a whole new bank account on Monday, just to keep the funds separate so that they can be used as a "kitty" taking the pressure off my boys. Where people pay me a little extra, it can go into the account, where I have to fund my own trip to London it can come from that. It won't last forever, but it will help more than you could all ever know. A bit of breathing space to carry on.

So "Thank you" all. No-one asks me to do this, but they support me nonetheless. I will always, always use your money and trust with care, I will stretch it as far as I possibly can and I will always try to act as an advocate you can be proud of.

Saturday 15 March 2014

Last chance for ESA Evidence

A while ago I posted a survey for you to fill out. It was so that Spartacus can put together a response to the Work and Pension Committee request for evidence on  ESA and Work Capability Assessments.

Although it asks for an email address, this will be strictly confidential, only our researchers will see it.

It takes just 5-10 minutes and with your informatiln, we will be able to put together a response from Spartacus so that individually, you don't have to.

It really is vitally important that we give this evidence as we are the people actually suffering through the system, not a faceless charity or think tank reporting on it. Only we can tell them how it really feels, how it really affects us.

Time is running out! We only have this weekend to submit our answers as our researchers MUST start collating your answers. Please. Take a few minutes to be heard. I know it seems like an endless round of being ignored but we ARE making a difference. 

You can fill in the survey here :

Thursday 13 March 2014

A Cry for Help

As regular readers will know, I've always been adamant that I can't take money for campaigning. I don't even have advertising on my blog.

The moment I accept the offer of some well-meaning charity, union, politician or corporation, I would become fettered by them, compromised. They would have control over what I can say or do

You might remember that I wrote a blog post early in the new year announcing that I just couldn't continue to campaign for free.

As a result,  I planned that if I only did the really important stuff it might just mean a droplet of respite for my poor long suffering boys.

You must also be wondering why so many typos at the moment?

Basically, my laptop is so riddled with viruses, it's impossible to do anything at all, so I've been trying to blog, email and tweet using my phone. I checked in the Oxford English dictionary and as I thought, this is the very actual definition of frustration. It's already been fixed twice, costing £120, but I think it's just past it now.

However, in the last month alone, I've :
  • Been to London for channel 5's Big Benefit Row
  • A meeting with Bns Tanni Grey-Thompson at the Lords, 
  • A meeting with the Fabian Women,
  • A meeting with Kate Green
  • A trip to the Royal Hospital for Neuro-disability to experience eye gaze software. 
  • I've been to York to lead the Better Way demo. 
  • Finally, I've had to get to 2 hospital appointments, also in London. 
Obviously in most cases, I can get my expenses paid by whichever organisation invited me but it can often take weeks or even months to refund. When I have to meet MPs or peers, it has to come from my own pocket. If I have to drive long distances, we have to stop every hour or so to top me up with tea and loo breaks.** 

At the moment, I'm owed nearly £350 in expenses and this has been the case, give or take, since the start of this year. Taken from a family budget already stretched by supporting a disabled adult who can't work, every day that goes by drags me deeper into panic. 

So with a heavy heart, I have to ask you to support me in a rather more obvious way. I've set up this fund : 

To :

A) Replace my poor laptop with a better quality one that doesn't crumble in the first year
B) Set up a "pool" of funds to act as a kind of kitty that I can dip into and pay back, buffering me against the constant uncertainly of how much campaigning trips cost and how long refunds take to come through.

I absolutely HATE doing this. I've only ever asked for support for myself once, during the frenzy of Spartacus Report and I detest the fact I'm having to ask you again. 

Whatever happens, please DON'T donate if you can't afford to, out of some kind of loyalty or guilt. Also, please DON'T donate huge sums. If we all just give a few pounds, we'll reach the target in no time. In this case, the quantity of donations really is better than the quality. 

**Clearly they can only get hold of the gold plated teabags at the moment if tea costs £3 a go!

Suggestions of Awesomeness

Hello all.

I've been asked to put together a list of leading social security experts and campaigners. I'm very very bad at this. This is one of the reasons I never do #ff ("Follow Friday's" on twitter) I just know I'll leave out somene vital, and they'll think it was intentional and that I think less of them than the people I do remember, and...and... See? I'm hyperventilating just thinking about it!!!

Here's my very first, top-of-the-head attempt and I'd be so grateful if you could leave any other suggestions in the comment thread.

Again though, please remember that if you're not on the list, I am a foggy, broken spoonie who often forgets her own phone number, never mind a list of welfare-warriors.

  1. Jane Young
  2. Caroline Richardson (aka "@hossylass on twitter)
  3. John McCardle, Black Triangle
  4. Andy, DPAC
  5. Paula Peters, DPAC
  6. Nick, mylegalforum
  7. Michelle Mahler, WOW Petition
  8. Ian Jones, WOW Petition
  9. Pat Onions, Pat's petition
  10. Kaliya Franklin
  11. Joe Halewood, Tax and Benefit Justie Campaign
  12. Mo Stewart, Independent corporate welfare investigator
  13. Susan Archibald, Independent campaigner
  14. Simon Duffy, Centre for welfare reform
  15. Simon Barrow, Ekklesia
  16. Sue McCafferty, Bedroom Tax
  17. Tom Pollard, Mind
  18. Frances and Rosemary from Carer Watch
  19. Johnny Void, The Void
  20. Clare Glasman, Winvisible
  21. Steve Sumpter, LatentExistence
  22. Jayne Linney
  23. Mike Sivier, @midwalesmike, led on campaign to uncover how many pple died within 3 months of "Fit for Work" decision
  24. Sarah Ismail, Same Difference blog
  25. Sam Barnett-Cormack, ESA researcher and commentator
  26. @Goldfish - Blogging against disablism
  27. "Mason Dixon" Autistic
  28. Dawn Willis - Great mental health advocate/blogger
  29. Mark, @markoneinfour MH campaigner
  30. Inclusion London
  31. Jules Clarke, ESA advocate and campaigner
  32. Tracey Lazard, Inclusion 
  33. Anonymous author of the 2 PEople's Reviews of the WCA
  34. Greg Wood, ex Atos-doctor turned whistle-blower
  35. Richard Excell, TUC
  36. Kate Belgrave
  37. Neil Crowther, independent and member of taskforce
  38. Amy Jones, @thisisamy Cerebral palsy, told her condition wld improve within 6 months to the point she wld be fit for work!
  39. Charlotte Walker, @bipolarblogger 
  40. @halfabear 
  41. Gordon McFadden of United Amputees
  42. @kabieuk Autism campaigner
  43. Jos Bell, Save Lewisham Hospital campaign and fierce ESA expert/campaigner
  44. Steve Winyard, RNIB
  45. Neil Coyle, RNIB and ex DRUK
  46. Catherine Hale, Work Programme expert 
  47. Lisa Egan - @lisybabe
  48. Dave Gillon @WTBDavidG
**Just to be clear, this list is for an event, so for groups (ie DPAC, Inclusion, WTB etc) only one or two names from that group are listed. It definitely doesn't mean others in those groups aren't fantastic campaigners. 
*** Also, it's in no particular order. Numbers do not denote level of awesomeness 

Tuesday 11 March 2014

Musings on a Rally & a Speech

As most of you will already know, I shlepped up to York at the weekend for the TUC "Better Way" demo.

A course of anti-biotics had been trying to kill me all week, whilst failing spectacularly to munch up the non-specific fluey fevers they were directed at. By Thursday, I was phoning my GP in tears and by Friday morning, it took indusrial strength tea and elephant tranquillisers to get me in the car at all. Dave made me a duvet bed on the back seat, and I moaned and grumbled my way up t'North.

I've learnt that Premier Inns are the way to go for disabled travellers. I've always been allocated a proper disabled rook near the lifts, the staff are friendly and helpful and the rooms are comfy. This one was linked to a TGI Fridays and arriving at 9pm, we had no choice but to venture into it's deafening, fake-American-cheerleader hospitality. Should you ever consider eating microwaved steak in a cocktail bar playing AC/DC at 130 decibels with a splitting headache and a fever, I'd give it a miss. When the miserably-cheerful staff arrived at the next table to sing happy birthday, massacre almost ensued.

It was International Women's Day and all the speakers were women. York TUC wanted to take pictures of us all before the march and somehow, I found myself at the front of the demo, bearing a banner and set to lead the way! Usually, I avoid such exertion at all costs, but with Dave pushing my wheelchair and those whotsit-zulas blaring along with the reggae band, I felt a wave of irresistible activism surge in past the infinite collection of symptoms and before I knew it, I was leading a crowd of hundreds through the streets of York.

I am as Southern as fried chicken, living as far South as it's possible to get without actually paddling. When I do venture beyond Watford Gap, I'm always taken by the difference. The UK feels more united up North. Friendlier. Braver.
But as the band of cheerfully fluttering union banners and patuli oil bobbed forward, it struck me that activism really is a dying art in 2014. York is an affluent looking city, but the he march also wove through a large, inner-city housing estate. This should be the heartlands of public solidarity, but curtains stayed drawn, doors, stayed shut. A few curious faces stared from windows and doorways, but in days gone by, the streets would have been lined with the very working people we were there to defend. As the tail of the march came into sight, public supporters would have joined the procession, cheering and chanting along.

I was there to give a speech, which is linked below. Burning to persuade people how the chaos unfolding at the DWP was ruining lives, I put everything I could into finding the very best weapon-words I could. Dave filmed me with his phone and immediately uploaded the video to YouTube.

As we started the monotonous, fluey, drive home, twitter came alive, RTing, begging, pleading and cajoling supporters, the great and the good to send the link viral. It seemed to touch hearts, articulte a great pain that grows daily unchecked.

Still today the link is being shared as hundreds desperately try to spread the word and as I write this post, over 1200 have watched the film. Wonderful though that is, it's far from viral, ironically underlining the very points I make in the speech about a group of sick and disabled people no-one can seem to hear or see any longer.

If you care about this country, whatever your politics, this speech is for you. I travelled for two days with a fever and raging crohn's disease to give it. I suffered an American chain that dares to use the name restaurant. I suffered AC/DC for goodness sake!!

So for all those people so desperate for you to watch it, share it and persuade others to watch it too, please decide that 9 minutes isn't too long to spare to right a great wrong unfolding before your very eyes.

Thursday 6 March 2014

2 Thirds refused PIP

This rather worrying report claims that just 37% of standard claims for PIP were successful.

If it's true, it's even more worrying than we feared.....

Monday 3 March 2014

Magic Monday

Here's my offering for this week's "MagicMonday" action . .
I've opened up the comment thread to all now and hope a few of you might share you actions to inspire others.

"Dear Sir,

I wanted to let your readers know about Mark Wood.

Mark was 44 and suffered from severe mental health problems. Amongst other things, he was diagnosed with  aspbergers and OCD (obsessive compulsive disorder)

Last year, Atos Healthcare, the French IT company who carry out Employment & Support Allowance (previously incapacity or "sickness" benefit) judged that Mark was fit to work. They didn't consult his GP who has since said that if he had been consulted he would never have recommended that Mark could work.

His ESA was stopped along with his housing benefit, leaving him just £40 per week to cover all his expenses. Food, shelter, warmth.

Mark died of starvation just 4 months later. When they found him, there was just a banana and a tin of tuna in his home.

It is the UK and the year is 2014. Yet people are starving to death, alone in their homes. They do it discreetly, out of sight, but they die just the same.

If Mark was an isolated case, then maybe, just maybe, we could forgive his tragic loss. Maybe the pain his family feel would have been less crushing.

But he's very far from an isolated case. Stephanie Bottril, Karen Sherlock,
Mark and Helen Mullins, Denis Jones, Jacqueline Harris, David Barr, Elaine Lowe, Elenor Tatton, Linda Wootton......

The list goes on and on now. Every day a different death linked directly to government social security "reforms" yet we, the public, seem determined to look away.

I never thought I'd see the day when I had to warn people, right here in the UK, that often vulnerable sick or disabled people are dying and no-one cares.

In 2011/12, 10,600 people died within just 3 months of being found "fit for work" by the DWP. Since then, they've refused to publish further statistics at all.

When this government speaks of "welfare reforms", I'm fairly sure readers don't assume that they will cause tens of thousands of deaths. I just hope we all wake up  soon, before they are joined by thousands more

Very best