The "We're Fine" Update

And from the whole of the Broken of Britain team I can say we are. Fine I mean. Ok so one of us has just got out of hospital from yet another infection, one of us has a 'wonky' heart, one of us has just moved and is suffering the increased health consequences, one of us has been diagnosed with dehydration, malnutrition and exhaustion, and another has a chest infection. But we're spoonies so we're all fine. 

To us 'fine' can mean not knowing what day it is, what our own names are or where we are. It means the people who love us standing over us with fear and worry etched on their faces, begging us to slow down, to see a doctor. It means those who care saying with broken resignation in their voices " but it shouldn't be like this, this is Britain". It means sitting back and watching us deteriorate until we have no strength left to argue otherwise, overruling and sending for the doctor. But still we'll tell you that we're fine if you ask.We'll probably even claim we're fit for work when we're like this, to us it's just a natural consequence of the risks we all knew we were taking with our health by campaigning but felt we have no other option but to continue anyway. 

To help you understand our 'fine' it might help to explain that not all of the 5 of us will live to see the end of this fight. Our conditions vary, but we are united in our shared understanding that this battle is bigger than each of us, more important than our individual lives, that it is literally a war we will wage with our dying breaths to protect those who we know will come after us, those we wish a better future for.

But it is a war with huge, terrible costs associated. Not bullets and bombs but no less lethal all the same. We step back and regroup because we have no choice, our bodies are weakened by the ferocity of attack against us. When ordered to rest we fret and worry about those with no-one to care for them, to fight for them and through our delirium insist on trying before falling back in a grudging, tactical retreat. 

The energy to fight will always be found - it's taken 3 days to write this much. To try to explain to you that this is the reality of 'fit for work'; that no matter what we do, what efforts we go to, we fight this because it is wrong. It is wrong to traumatise sick, disabled and dying people already living difficult enough lives for being unable to manage their bodies or minds well enough to sustain work.

But please don't believe that we are 'fit for work' or even that it's true when we insist to you

"we're fine" 

Welfare For The People, By The People - A Consultation

Did you ever wish you hadn't started something?

When I started this blog, I had some hazy idea that perhaps I could share my stories and it might help other sick or disabled people to feel connected. I thought I'd tippety-tap away now and again, saving my poor hubby the trauma of 24/7 news bulletins and political rants.

I didn't for one minute think many people would notice. I'd used the odd forum here and there and imagined a kind of cosy support group where "spoonies" "sickies" and "crips" could enjoy reading the ramblings of someone who actually "got it"

I didn't think I'd find myself reading endless transcripts of a dangerous and callous welfare reform bill. I didn't think I'd be on radio shows or in national newspapers opposing cabinet ministers. I didn't for one second imagine my blog would shoot into the top 50 political blogs and stay there and I certainly didn't think I'd be invited to the Compass conference next month as a guest speaker.

And that's just the stuff I can tell you about!!

You may have noticed fewer posts lately and if you knew the stuff I can't write about (though I will) you'd see why blogging is having to take a bit of a back seat.

I've always liked to learn and OH MY GOD have I been learning. In just over 6 months, I've read just about every theory put forward on welfare reform over the past two decades. I've read Blue Labour, Purple Labour, Policy Exchange, Progress & Compass reports, everything written by Iain Duncan-Smith, James Purnell, Frank Field and Jonathan Rutherford**.

Shall I sum them up for you in a natty soundbite?

"I despair"

Or another?

"Get a bigger stick, throw away the carrots and beat 'em to despair"

I read their "proposals" with incredulous dismay. I wonder just how many have ever actually experienced any of the problems they wish to solve. From the mid nineties, politicians who timidly took the first steps towards reducing the welfare bill have been encouraged to "think the unthinkable" and over the years, they've forgotten that it was ever considered unthinkable in the first place. The "unthinkable" is now not radical enough and, as I write on an almost daily basis, we've reached the tipping point. We are on the brink of removing sickness benefits altogether and disability benefits are to be slashed so far, that sick and disabled people have only the last resort of our judicial system.

We have reached a stage, where only the Human Rights Act or the European Court of Appeal can save us now.

Why? How has it come to this? When asked to "think outside the box", why did every last politician think inside a tiny, claustrophobic box tied up with ignorance-string? How did the "scrounger" narrative get such traction? Why did every last politician consider how to throw us off benefits with little care or concern for where we will go? Why did a succession of Oxbridge educated men choose to focus on a mythical hoard of cheats and skivers, convinced that with bigger and bigger sticks we could be forced into work? If fraud is just 1/2 a percent, what convinces these men that most could and should work? When medical evidence assures them that many of us can't and, in fact, work will make us worse, why do they ignore it?

Now let's see how successful they've been. Since 1994, successive "work programmes" and schemes have been rolled out to get sick or disabled people back into work. Has the welfare bill gone down? Has business embraced us and modified their structures to include us? Have the private companies, paid billions to find us work been successful?

No, No and No.

Not one single thing has changed in 25 years. The sickness and disability benefits bill has stayed stubbornly constant and work programmes have pathetic success rates of between 8 and 15% (almost identical to the number of people who find work on their own)

The solution? Cheat.

Change the descriptors, make certain that fewer people will qualify and break a million eggs to make a rotten omlette. Since Labour started "cheating" in 2008 the rate of those claiming sickness benefits has fallen. Now the Conservatives are about to cheat in such a spectacular way that the financial bill will certainly go down dramatically, but at what cost? Using the model of the past 25 years, this will be considered a "success" as costs will finally be cut. Eureka!! All they needed was one almighty stick and a sneaky bit of legislation or two that effectively all but stops sickness benefits altogether.

One might think that if a government are serious about stopping sickness benefits, they would have their best thinkers devising plans to make sure that the people affected had somewhere to go. That they wouldn't be left to starve without some pretty cast iron guarantees that there would be an alternative. One might think that there would be research available to prove that pulling support would in fact be empowering and manageable, but there is none.

Having said all this, we're no closer to finding out "why?" politicians are convinced that we can all pick up our beds and walk - or are we?

Ladies and gentlemen, I give you the "Psycho-Social Model"

Allow me to paraphrase. (The link above will give you the scientific stuff, I'll just put it in Sue-speak.)

We are all sick or even disabled because we choose to define ourselves as such. Despite our various diagnoses, those that manage to work have a better psychological grip of reality and do not become "victims". We choose to stop working from a lack of confidence or fear of failure and become lazy and plagued by doubts. The longer this fear develops, the less likely we are to find work and stay in it.

Any symptom, and disability can be overcome through perseverance and the right mental stance - we simply need re-training in our attitudes. Hence the conclusion we reach today, where you ask what work you can do, not how your illness or disability limits you. Those unwilling (remember none are unable) to find work they can do will be abandoned.

Time Limiting ESA will enshrine this in law. If you haven't overcome these "psycho-social" flaws within one year and found work, the state will wash it's hands of you. That's why the language speaks of "helping" us into work. The paternalistic state will stop our metaphorical pocket money and take away our sweets if we are disobedient. If "encouragement" doesn't work, there are a whole host of sticks to beat us with.

This also explains an assessment that focusses solely on what we are physically able to do and ignores any  pain or symptoms or distress. Pain and symptoms and distress can all be overcome according to the psycho-social model, they are simply a part of our psycho-social weakness; shields to keep the world away, to wallow in our own helplessness. If you can swallow or do up a button or pick up a penny, you must, no matter what it costs you, or you are simply allowing neurological impulses to get in the way of a full and financially productive life.

It might not surprise many readers to find that Frank Field and James Purnell are the most zealous advocates of a psycho-social approach to welfare. Reading my red-top precis, academics may nod sagely, believing there is much to recommend the theory. And that is the vast, putrid, hideous, terrifying problem.

If you don't have MS or bowel disease or cancer or schizophrenia or alcoholism or parkinson's or lupus; if your research is conducted in an academic bubble of theories and sociological studies and think-tank jargon, you might as well be designing policy for fish. However much an affluent, out-of-touch politician might think a theory is the answer to all their prayers, you simply cannot make an unsound theory fit reality without cheating.  An alpha-male, who has sailed through life without physical trauma, poverty or disadvantage, will simply be totally unable to empathise with the nuances of suffering. They can no more design a welfare system that works than I could design a new offside rule.

Until sick and disabled people start to put forward their own suggestions, their own answers, we will remain in the hands of ignorance and arrogance. Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens. The time has come where it is no longer enough to oppose, we must educate and inform. We must save ourselves, because my endless nights spent poring over welfare papers has convinced me that we have no alternative. Privileged academics and politicians have proven themselves horrifically incapable of even beginning to understand our lives and if we are to get a welfare system that actually works for us, we need to start making suggestions. We have the experience, the knowledge and the understanding and they never will.

So today, please use the comment thread below to explain what would help you. Contribute your ideas and suggestions no matter how silly or unformed you think they are. Share your stories of trying to work and how the system has failed or supported you. Make them essays or make them just a few words. I don't care how long or short they are. Tell me what work you could do and what support you would need to do it. Does the state itself trap you? What could business do to enable you? Is there a working model that could suit you? What type of work would you like? Why is it unavailable? Do you want to work? Would it make you better or worse? Would it increase your affluence or plunge you further into poverty? In an ideal world, what would governments be doing to support you?

Remember, this is a brainstorm. Write anything. It can't possibly be more banal, mis-guided or unworkable than the suggestions of successive politicians.

Please help. Join in, engage, show politicians our endless strength, our great value and our hopes and dreams. Help me and I'll do my very, very best to help you.

As I started this article by explaining, I have been given a voice. I have the privilege of a platform. It's your platform too and I need you to share it. Otherwise, I might just end up as another mis-guided fool who thinks she knows it all. I can speak for myself, but I can't speak for you.


*Finally, please share this article with anyone you know who suffers from a chronic illness or disability. Urge them to contribute to the consultation, tweet it on twitter, share on Facebook and email to friends. Any consultation is only as good as the people who take part. It needs variety and balance. Thanks. 


**Rutherford is the one beacon of hope. He exposed the psycho-social model and opposed incompetent welfare reform before most of us knew it existed. Read more here 
Posted by Sue Marsh at 09:07

The #HardestHit - Day Of Action

 By MarkThree Media in conjunction with Scope.

We Have A Dream Speech #hardesthit




We have a dream. This is our dream.

Three score years and six ago the welfare state was formed. A vision of Britain as Jerusalem for all, a beacon of hope in a country battered and bruised by the ravages of war. Principles so important that despite the crippling debt of the post war years, our grandfathers and grandmothers made sure their dream of a society caring for all was a priority. Despite two world wars and countless people disabled in the pursuit of justice it took another 25 years for disabled people to start our own road to freedom..  
Now is the time to remember the founding principles of the welfare state. Now is the time to rise up. Now is the time to remember ‘rights not charity’ Now is the time to make equality of opportunity apply to all people, now is the time to measure our worth in talent not gold. 

It is obvious that Britain has defaulted on it’s promissory note of welfare for all, a famous note signed by Lloyd George, Beveridge, Attlee and Bevan with their hopes and dreams of a better world, a fairer future for all. A beacon of hope carried forward some 25 years later by Lord Morris with his Chronically Sick And Disabled Persons Act , the first in the world to recognise and give rights to people with disabilities. 

We refuse to accept a system bailed out by the taxpayer is so bankrupt it can no longer meet it’s obligations to the basic welfare of all people. 

We refuse to believe in a world which bankers choose to increase bonuses whilst disabled people choose between food and heat. 
We refuse to believe local authorities deem it right and proper to save money by leaving old ladies overnight in their own urine, we refuse to believe that removing respite care can be right. 
We refuse to believe that we should be blamed, targeted, made less human by those who sip from the cup of success.

It may now be a nightmare, but we too can dream. To dream is a right for all humans and the first step on the road to justice. Without our dreams we have no hope, and we all have hope. Our rights, our dignity, our existence can all be threatened, but the flame of our hope cannot be extinguished. The hope of a world in which all people are seen as human first, human, with fundamental rights; to eat, to drink, to live, to love, to be free, to dream. We can dream of a day when all children grow together, learn together, play together regardless of ability. We can dream of a day when those children become adults, accepting adults who see the world as equal, a world of ability not disability. We can dream of a world of people with the right to have their basic needs met in whatever form they arise.


We are asked “when will you be satisfied?” We can never be satisfied as long as those rights, first enshrined in statue are under threat.  We can never be satisfied as long as disabled people are victim of unspeakable horrors. We can never be satisfied as long as we remember Fiona and Francecca Pilkington, driven to such desperation by disablist bullying that suicide seemed their safest place. We can never be satisfied as long as we remember Christine Lakinski, urinated over as she lay dying in a doorway. We can never be satisfied as long as we remember Colin Greenwood, kicked to death by teenagers he couldn’t see. We can never be satisfied while disabled people kill themselves for fear of the DWP. We must embrace our diversity, our differences, our talent and work together until we can dream the dreams of all.
We can never be satisfied as long as our bodies, heavy with fatigue cannot gain access to the transport, to the workplaces, to the leisure spaces of our cities. We can never be satisfied as long as our children are segregated, denied appropriate aids and parents broken by the lack of support.

We make to you this promise. We will not cease from mental fight. Nor shall our pens sleep in our hands. Til we have built a new accessible Jerusalem. Til we have built a Jerusalem we can again be proud of, in England’s green and pleasant land.

Radio 4 - You & Yours

I will be appearing on today's Radio 4 You & Yours show between 12-1pm.
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