Friday 28 September 2012

Anne Begg Speech

Those of us that watched Tom Greatrex's Atos debate in parliament on the 4th September might have forgotten most of it now (Spoonie, know how it is)

But most WILL remember Dame Anne Begg's brilliant speech. I'd meant to post the transcript afterwards, and someone just jogged my memory that I'd forgotten.

So, for those who say "they're all the same" I think we can safely leave Anne out of it.

"Dame Anne Begg (Aberdeen South) (Lab): Congratulations to my hon. Friend the Member for Rutherglen and Hamilton West (Tom Greatrex) on securing this important debate. This is my first time speaking after my extended absence and therefore a good subject.
The Minister of State, Department for Work and Pensions (Chris Grayling): On behalf of everybody in the room and in the House, I welcome the hon. Lady back to the House. We are delighted to see her in such good shape. We were sad to hear of the difficulties in the long period of recovery she has had to go through. She is very welcome back.
Dame Anne Begg: I thank the Minister for being gracious. He may not be quite so gracious by the time he has heard what I have to say. I do not think that the Government have grasped how disastrous the ESA assessment system is. It is not something that can be fixed by a few tweaks here and there; we tried that with the Harrington review. What we have heard today in the Chamber—and in the “Dispatches” and “Panorama” programmes filmed in June this year—suggests that not much has changed. The people complaining are not just the usual suspects, not just the radical crips, the workshy or those who want money without being assessed. They are ordinary people, most of whom worked hard all their lives until the sky fell in and they lost their job because of an illness or an acquired disability
It is not enough for Government to say that the genuine claimant has nothing to fear. In too many cases, genuine claimants are not scoring any points in their initial assessment. There is something fundamentally wrong with the system and the contract that Atos is delivering. When the British Medical Association votes at its conference to say that the work capability assessment is not fit for purpose there is something wrong with the system. When GPs are reporting an increased workload, not just as a result of providing reports but as a result of treating patients whose condition has worsened as a result of their WCA experience, there is something wrong with the system.
When my constituent, who has lost his job because he has motor neurone disease, scores zero on his WCA and is found fully fit for work, there is something wrong with the system. When that same constituent appears in front of a tribunal and in less than five minutes is awarded 15 points, there is something wrong with the system. When people with rapidly progressive illnesses are not automatically put in the support group, there is something wrong with the system. When some people would rather do without the money to which they are absolutely entitled rather than submit to the stress of a WCA, there is something wrong with the system. When someone with a severe illness has to fight for a year through an appeal to get the correct benefit, only to be called in almost immediately for another assessment, there is something wrong with the system. When the recall and assessment happen the following year, and the following year, there is something wrong with the system. When people feel so persecuted, there is something wrong with the system. To top it all, they lose their contributory ESA after only a year if they are in the WRAG group.
When up to 40% of appeals are successful and there is no penalty for the company carrying out the assessments, there is something wrong with the contract. When so many appeals result in an award of ESA support group status when the original assessment was no points, there is something wrong with the contract. When there is no penalty for a high percentage of wrong decisions, there is something wrong with the contract. When there is no incentive for assessors to get the assessment correct first time, there is something wrong with the contract. It is time for the Government to act, because there is something fundamentally wrong with the whole system."

Wednesday 26 September 2012

Labour finally accept that ESA isn't working

Every single email and phone conversation I've had with Labour over the last two years have started with the line "If you don't accept your part in ESA and that it is NOT working as you hoped, you can never move on." Sick and disabled people will always blame you and will never believe you really want things to change.

So far, it has been the last major sticking point. Unwilling to say the actual words, we had reached a kind of impasse.

This morning, in a last ditch attempt to move things along, I emailed Liam Byrne and Anne McGuire. The time for "tinkering around the edges" had passed. Oh how I would like to tell you more, but I was clearer than I'd ever been.

Finally, after nearly two years of lobbying, pleading cajoling and VERY hard Paddington bear stares, with just a few days to go before conference, here are the words I've been waiting to hear. Enjoy.

UPDATE : As if we didn't feel the above article was enough of a breakthrough for one night, The lead story on Channel 4 News tonight was that of Colin Naylor. Finally, the country gets to hear of a story where the WCA has failed utterly. Colin lost his life and the inquest concluded that the assessment had been a factor in his death. at last, the country is listening.

Comic Book Conference Season

Ahhhh, Conference Season is upon us. That annual dash of showhands and illusion. That nod to the equally feared and reviled "grassroots"

Yesterday, I met some very nice Lib Dems at a fringe event on Adult Social Care. Delusional, trapped  Lib Dems - "There is No Al-ter-na-tive", "We stab-il-ised Int-erest Rates", "We're ma-king things less bad" - kindly automatons who don't believe a word they're saying. A grassroots totally detached from their leadership. A party almost totally at odds with the direction they are taking. But conference does it's job well. Nothing is more important than a show of unity. Dissension is carefully managed. The Lib Dems will stay in this loveless marriage because for them, there really IS No Alternative.

Like a comic book version of politics, conference bears no relation to what is really happening, or indeed what will happen once the backdrops have been folded up and put away, once the lights have dimmed and the veneer of inclusivity and democracy have faded for another year.

Cameron, The Joker, will ooze sociopathic idiocy for a week in Birmingham. It may just be that some plebs will have to be admitted and tolerated, but the champagne swilling Baddies will pepper the news with snobby utterances and outrageous put-downs. There will be a Theresa May cat incident or a "Toxic Tories" own goal or two. Beyond the secure zone we will shake our heads and agree that they are unfit to govern.

The words of the Joker will chill us all

"Madness is the emergency exit, you can just step outside and just close the door on all those dreadful things that happened. You can lock them away......forever"

But what is left?? So the conversation always goes. We have rejected the sociopaths, despaired of the automatons, but who will take their place? What is The Alternative?

Yet again, the country answers as one : There is No Alternative.

Ed Miliband has nailed Clark Kent, got him down to a tee. But Clark needs to find his underpants - and quick. OK, I'm mixing my comic book metaphors, but Clark can't defeat the Joker!!! He can't even face the automatons. He can't philosophise his way out of this mess.

In a whirl of decision, Labour Conference needs to give us Superman. We need a hero, someone we can believe in. We need the impossible to become possible, and we need the geeky Kent to astonish us all.

We need direction, a belief that if entrusted with saving the nation, Labour are up to the job. They need to give us Kryptonite, not philosophy. A great superhero can make the impossible possible, can find answers when others see only problems. They need total belief and a touch of magic.

Clark Kent is racked by indecision and caution, Superman has no such doubts.

Superheroes don't win by default. They don't sit back and wait for the Joker to burn himself out. They don't back off. They don't dither.

They see a disaster and they know what they have to do to make it better.

They become the Alternative.

Wednesday 19 September 2012

So How Am I?

These are extraordinarily difficult posts to write.

If you were to look at the very first few posts on this site, and their comment threads, you would see how uncomfortable I was with discussing my health from the very start.

I have spent my life pretending I'm OK whenever I can. Most of my family and friends say that they were staggered when I started writing here, privately, in front of the whole world. They had absolutely no idea how I really am because if I let them know, I have to admit it to myself.

I hate sympathy. I mean phobically, rabidly detest it. Sympathy is the big neon light that confirms my secret is out. There is no sympathy without pity and I cannot bear the moments where I see that my life can be pitiful.

But I made a choice to shine a light on this other world. To draw back the veil on a life like so many millions of others, lived beyond the comprehension of most. Because without comprehension there is only the  ignorance of being judged. If I don't edge into reality now and then, lay myself totally bare, face the day as it is, just for once, then none of what I write has any meaning. It has no context.

I've been very unwell since my last operation. I didn't recover as I normally would.

I started to get hot-poker stabs of pure pain at the site of my surgery, so breathtaking, I would shout out involuntarily. I am no surgery virgin. As the days and weeks went by I failed to put on weight as I normally would. I was weaker than I should be and I had all the symptoms of obstruction I was supposed to be free from.

After the horror of my recent stay, I found myself with no medical or surgical support at all. No gastro, no bowel nurse on the end of the phone, no dieticians, no surgeon, no cardiac consultant, no more lovely rheumatology specialist, no respiratory doc, no neurologist. I had to start over to get the treatment I so urgently needed.

Chronic care is not acute care. The endless, bureaucratic hell of trying to negotiate urgent treatment is a farcical, kafka-eque, nightmare of unbelievable delays and disappointments. You just won't know unless you've done it, so you will simply have to trust me when I say that you just have to play the game. You wait the waits, you succumb meekly to all of the same predictable delays and conventions. You live a limbo-life of survival.

I'm malnourished. I daren't eat more than once a day. If I eat at lunchtime, I will writhe all afternoon but might enjoy a few hours with my family in the evening. If I need to do anything at all during the day, I dare not eat til the evening and so pay the price through long, sleepless nights.

I try not to faint at the school gate. I wonder why I'm crying because I can't find a bill or satchel and realise I'm shaking with hunger.

I allow myself two days of opiate-cloud escape at the weekend, when I can hide away in bed and Dave can compensate the boys with ice-creams and parks and bedtime stories.

But I itch and I sweat and my nerves jangle and jump. By Monday morning I never want to see a painkiller again. Then, by Friday, I crawl into the surgery again, convinced that it is, after all, a price worth paying for some peace from pain, however fleeting.

We dare not plan, Dave and I. Yet we do plan. Because life must somehow go on. We fill our diaries cautiously with normal lives until the normal life becomes chaotic and frightening and uncertain all over again.

I have never needed surgery immediately after surgery before. There has always been some respite, a brief few months after the horror of an operation, that mean I always remember there will be better times ahead. You need some fight to go into surgery. Some strength and reserves and acceptance. I have none of that this time. I am still a painfully thin, weak, little bag of bones.

I am lethargic. I don't want to write or check my emails. I don't want to climb into a frock and a painted on smile and fight for justice. I don't want to pay bills or make phone calls. Even my old friend adrenaline is becoming more and more reluctant to drag me through.

So I hide away in the twilight of this limbo-life. Please, don't make me look, and later, we can pretend that this was all just a bad, bad, dream.

Tuesday 18 September 2012

Life's Crooked Path

I started a blog. But you all know that.

Like tens of thousands of others, I decided to air my grievances in public in the hope I might right what I saw as a terrible wrong.

For 10 years I'd been extremely sick. I think 8 major operations, chemo shots and half a bowel pretty much make that point unarguable. For 10 years I hadn't worked. For 10 years I'd lived with the uncomfortable knowledge that any talents I had, any achievements I'd fought so hard for were collecting dust on a shelf.

I felt that there were terrible flaws in our health service. But the NHS had saved my life innumerable times. Like a bad, bad man you can't quite stop loving, for all it's flaws, I wanted to work within a system I believed passionately in, to make it better.

I felt that my Labour Party, a party I'd supported and believed in since I was old enough to speak had lost it's way. But that party had still achieved amazing things, for all it's flaws, and I wanted to work within a party I understood intimately to make it better.

Ambition? Hell yeah, I've got stacks of it. Ambition doesn't die with each diseased lump of rotting flesh they cut away.

Ambition for what? It's a question few seem to ask just now.

I believed without any doubt that people with "hidden disabilities" were under attack. We were the forgotten casualties of disability, the unseen statistics, the lives denied by the fortunate. I write for them. I write for me. No-one can be all things to all people. No-one should try to be.

I thought that if I could write about my illness, my life I might shine a spotlight on so many millions more, hidden from public view, stigmatised and judged and crushed. Lives that still had great value, if only anyone cared to see. Lives that were rich in human resilience and endurance. Not wasted lives, not "festering" "feckless" "lazy" lives. Hard lives. Painful lives.

But there was a job to do. I've rarely written much at all about my "personal philosophy" - that way lies madness for anyone hoping to earn credibility in an elite, male dominated world. Nonetheless, I've always believed that if you see a great injustice it is you duty, your responsibility to the world to fight it. You might be wrong - certainly many will believe that you are. But if our little lives lead us anywhere, then surely they lead us to our own personal legends?

What do we do when that moment comes? When you realise that everything that came before was simply a signpost to a moment?? How many walk away? How many decide it's too hard or too dangerous?

There are days when I think I must be stupid. When all I wanted to do was stay in bed, look after myself, try to stay alive - and I assure you, my life is mostly about staying alive, (though many will decide that something they cannot understand, have never experienced is mere hyperbole), a moment came and I found that I couldn't let it pass.

And when you suddenly know that you are on a path you must follow, it's funny how you somehow don't get lost. Maybe the air breathes for you, maybe the clouds part when you need that sunshine the most. Maybe you find a strength you never knew you had, just at the right time. Maybe the actors and actresses playing their own roles take their place on the stage by your side. Maybe someone stops you in the street and tells you something strange at just the right moment.

Maybe, just maybe a little magic happens.

If you are wrong, cruel heartless, that may still be your path. I'm not sure any of us ever really know. I'm not sure we're meant to.

But being very, very ill for a very, very long time alters your perceptions. Ambition must be muted, nurtured, modified if it is to survive. I want justice.

I want it from our politicians, I want it from our doctors, I want it from our media. 

Do I want money? Well, who doesn't, but my unusual life taught me that money is a small thing, a pleasant but illusory thing.

I'd love to have a "job", work in politics, maybe write a column, but I accepted long, long ago that that simply cannot be.

I'd love to change the world in some small way, make it a better place somehow. I'm sure we are all born hoping to leave a mark, some small dent on the world that gives this odd reality a purpose.

I hate fame. I hate it's vanity, it's greed, it's exposure. But the path insists that to do the job you must use the tools you find, unexpectedly, along the way. If you are given a chance, given a moment in time to be heard, then surely only a coward refuses to shout as loud as he can? I admit my ambition, admit my flaws, but I don't apologise for using whatever life has taught me.

You only walk the path once. When you reach the destination, all the magic drifts away. The job is done.

If the path leads you to some glory or success, only a fool believes that it is hers to claim. The glory or opportunities that come - if they come -might  make the path a little easier, clear away a few of the stones that litter the way to justice. Sometimes, the goal can only be achieved by compromise or awkward, discomforting empathy. But a fool who keeps her eyes only on the goal forgets to notice the path along the way.

We all seek approval, we all hope that there will be friends along the way who will help us to clear the path or carry on our way. But friends can turn enemy, some will speak of love and support yet manage only to destroy or undermine. It is the way of things. Learning to trust your true friends is hard. Accepting support to achieve your goals is often unpleasant, but if a "spoonie" life prepares you for anything, then it prepares you to value the constant few and accept those who drift away without judgement.

And so I will write. If I have anything interesting to say, people will read it. If not, I will still write because it's all I know how to do. All I have ever done.

I will lobby as I write, I will berate, implore and cajole. If I am asked to reach a wider audience, I will be grateful. If I can possibly find the strength to travel, or speak or debate, I will. Few will hear of the times I simply can't. I will do what I can as well as I can. No-one can do more than that.

I will win small battles. Long ago I realised that there are only small battles. There is rarely a moment of pure victory. A life spent waiting for the big win, the glorious moment of perfection might just slip away with nothing achieved. But every battle won leads me closer to a better life. A better life for me, yes! Of course! But if I'm extraordinarily lucky, if the path dictates, a better life for millions more.

I will fight my battles and leave those that I cannot change to others.

We all have a path, but we are best when we find our own way. Our energy is precious and not a drop should be wasted on throwing branches and stones in the way of another. Fight your good fight. If the moment comes, fight it hard.

That is my ambition.

Friday 14 September 2012

Opinions From Spartacii Please....

This won't be eloquent or interesting, I just need a crowd-source decision.

Although I still don't get any actual money-pay, most people who ask me to speak at conferences or hold breakout sessions now pay my expenses. Luckily, this means I haven't had to use any of the left over Spartacus fund for ages. (My blagging skills appear to be second only to Kaliya Franklin's but no-one will EVER match her ability to charm)

With the political conference season fast approaching, I will be on a panel at Lib Dem conference in Brighton discussing social care with Paul Burstow, and I will be going to Manchester for the Labour conference on the Monday and Tuesday. 

Many thanks to those already supporting my ability to lobby by paying for those expenses.

However, I wanted  to ask you all if you thought it was a good idea for me to spend some of the remaining funds on extending my stay in Manchester a further two days, so that I can be there for the entire Labour Conference?

I usually feel that some of my most effective moments, politically, have been at conference where access to ministers, advisers, journos and wonks is wall-to-wall for 4 days.

It will however probably mean two more nights in the hotel and they won't be cheap during conference week. I haven't got a figure yet, but I imagine over £100 a night for two nights. My travel is covered already by those hosting the fringe events I'll be attending.

Although it's probably too late in the day, I would still like to get a pass into the secure zone, and if I'm able to, I will have to pay for that too. Obviously, if any other opportunities come up between now and then to get these expenses paid for too, I'll grab it, but otherwise, I'd really like your opinions on whether you think it's a good use of the funds or not?

Do leave comments below if you can, but if the infamous nightmare that is my comment thread won't let you, you can tweet me @suey2y or let me know on Facebbok (Sue Marsh)

Either way, I'll be doing my absolute best for you all on the Monday and Tuesday and hopefully, I can cause a few stirs again - just like last year when Kali and I handbagged poor Ed quite so spectacularly ;)

Friday 7 September 2012

Welfare Warnings Become Reality

Some have been asking why everyone is so sad, so irritable.

Well, we spent two years or so warning what the Welfare Reform Bill 2010-11 would do. We were accused of scaremongering, of hyperbole. But we knew what was coming. We knew what this so dreadful piece of legislation was going to do. Though the Government refused to conduct an overall impact assessment, we knew what the overall impact would be. Why? Because the bill, now an act, was referring to our lives.

Our lives. Every aspect of them. How much care we are entitled to in our communities, how much income they judge we can live on, whether we would work or not, whether we socialise or not. We didn't need to read white papers or committee reports or research papers to know, though we read them and reported on  them endlessly. We understood in a heartbeat. We've spent years filling in the forms, sweating with terror before an assessor (oh yes, there were always assessments, a fact the Government love to deny) juggling the last £1.50, occasionally needing crisis loans - this is how we live.

And now the act is a bill. It is law. The un-informed and ignorant love it, the even-slightly-informed are watching the slowest car crash of all time through their fingers. All of the warnings, all of the cautious, reasonable arguments we made are coming true right before our eyes. A daily procession of astonished horror as millions of sick and disabled people up and down the country realise with shock, that the Government "did mean them" after all.

The following blog post was sent to me earlier. I have no idea who this woman is, what help they've already managed to arrange, what they might have been rejected for or accepted for. I think her bewilderment and obvious confusion shows how the system fails better than I ever could with fancy research.

I would just beg ANYONE who thinks welfare reform  is going well to read her story and ask yourselves if this is what you thought would happen? Please. All the John Redwoods and Ken Clarkes and Boris Johnsons who believe passionately that welfare reform must happen but surely, never in a million years intended it to do this? Please, imagine you are in her shoes. Imagine the shock and bewilderment, the overwhelming workload of looking after 4 children under 8 and a now brain damaged husband.

And PLEASE believe me when I say this is not a one off. I am now sent stories like this all day, every day.

Finally, would John Howell MP please contact this woman TODAY. He is her MP and it is his duty to help her. Not just a phone call and promises of help in the future. Would he please ask his secretary to phone this woman, talk through the whole situation with her and actively find solutions for her? He must find her a good welfare advocate today, make an appointment for her with the CAB today, phone the council housing department HE is elected to represent and insist they find her suitable, accessible housing today. 

It is his government that are so adamant these things can be dealt with locally. No more crisis loans. As her MP, John Howell can no longer fob her off as a constituent - almost all of her problems have been devolved to local government and it is up to him to help her access the services and support her family so desperately needs. 

Please, if you can help this woman and live in the Thame area, would you get in touch with her? If you're just reading this post in horror, please share it far and wide. The more people that read it, the more chance that we can find her the help she so desperately needs. 


The battle of my life…

This following statement I am writing in the hope that it may fall upon the person out there I need to help me in this dire situation…I am writing it for anyone to use, re-post (if you would? Thanks) and to anyone out there who might listen and help…

We live in a country where we thankfully have the NHS, the benefit system, thank goodness that IS in place to help-but as they have cut off my benefits till some kind of proof of something or other is provided, I am now in a dire situation and unable to feed my children…The system is NOT working for me, but against me…Surely we’re the ones they are put in place for???

After my husband Alex Wood, suffered a severe brain injury on the 4th October 2011, my life, now nearly a year on becomes not easier, but ever more fearful and stressful.

After a few weeks now of insane trials, fighting against the benefits system, fighting for funding for Alex and my head spinning with where to go next, I am now writing this as I have to take this a step higher…

Yes, Alex is making progress, and yes, we do have some kind of future, yes, I am 100% behind him and on the frontline battling for him to continue making this progress, but for Alex to continue making progress, caught up, now in the dependent position of being a ‘single mum’ of four, aged 8, 7, 6 and 4, in order for me as their mother to feed, clothe them, keep a roof over their heads, I am fully dependent on the benefits system, and reliant on the council finding us a council house adapted to Alex’s needs, now blind and severely disabled and cognitively impaired…

The council tell me ‘there are no properties suitable’…Will there ever be?? Alex can visit for extremely short periods only as he is restricted by the lack of access and is, in effect homeless, as he cannot be housed in the temporary house we are in…

The situation is, that I alone am now responsible for providing for our four young children, for fighting to get the right and sustained funds for Alex’s rehabilitation and re-education. I have to be everywhere, and have to be everything for everyone, whilst running a house and making sure the kids have clean clothes amongst a myriad other chores…Whilst living with indescribable grief at the loss of the husband that Alex used to be...

Surely the system is there to help people in difficult situations, that’s why it exists doesn’t it? But my experience is that it is there to hinder and after receiving a letter telling Alex he has a job interview on the 28th September which if he doesn’t attend could effect his benefit (Employment Support Allowance) is just more than ridiculous…They tell me when I ring the job centre they’ll do it over the phone instead…??? Do they not get it? He is utterly and completely incapable of this…!

I fight daily battles, not just on an emotional level facing the fact that my soul mate, my whirlwind romance, my everything, is not the man he was, and all the grief that leaves me to deal with, but surmounting this, then further battles with the benefits system, a car which is on its last legs and not having any idea how I would ever replace it…

The system clearly does not work for people who genuinely need it. And I genuinely do!

I am not sat about all day on my bum wondering what I can do today with peace and quiet…I am out there making calls, thinking of and organising fundraisers for my husband, planning things for the kids we can do for free to give them a good childhood. Counselling them as they need it, their dad is not the dad he once was, and they grieve this terribly, as do I.

So who can help me? Who will share this? Who will help me get this to the right people who can make a difference and take my story on board and care enough to do something about it?

I have written to Boris Johnson, he might help?

The local MP, John Howell, in Thame was not interested, one of his secretaries emailed me weeks after I sent a desperate plea saying they did not deal with cases like mine, to go to the council…This does effect him actually, he is a government MP, under the noses of the government I am (as the child tax credits have been put on hold till I provide a particular piece of evidence) a mother of four under eights with no access to funds to feed my children…

I am going to approach the Labour Thame MP with what he might be able to do in light of this.

If you can share this post, spread the word, that will be doing me a massive service…

I am turning my fear for not being able to provide for my kids into rage and action…in the frontline now as I need help to get Alex the right rehabilitation, not at the mercy of the NHS and the fear that the indefinite funds will one day run out, and he will not have the chance he needs.

I have to fight for him, I have to fight for my kids, any other mother out there in my situation would do the same.

Thank you for listening, thank you for sharing, and I hope this gets my story out there and Alex does get the chance he needs…"

Wednesday 5 September 2012

Tory Tim gets the Chop - but WHY?

I live in Worthing.

No offence, but you could pin a blue rosette on a park bench and local residents would vote for it come election time.

I am the Worthing Labour Nemesis. That's it, just me. I rant and rave, stand at election time and try to pretend the "opposition" is more than just me and 10 or 20 other die hard activists.

I don't like Tim Loughton, MP for East Worthing. He has been incredibly slimy at polling stations, tried to sideline me with 90 year old residents at every opportunity and generally acts exactly as you might suppose a Tory with a HUGE majority might.

BUT. He did quite a good job as Minister for Children. He spoke out once or twice for children (shock, horror) and adoption of babies went up dramatically - an issue I believe he holds close to his heart.

In short, he did his job, worked as hard as he could, listened to a bit of evidence here and there, and actually made a bit of a difference.

The other Worthing MP, Peter Bottomley is not too shabby either. A long term defendant of the sick and disabled, it was his opposition to removing the mobility component to those in residential homes that led to the government removing this most pernicious of policies.

So guess what? In the reshuffle, Loughton lost his job!!! One of the few effective minister, for reasons best known to himself, Cameron gave him the chop!!

Now, if a rabid leftie like me finds that against all odds, the MPs she has opposed for decades actually did a halfway decent job, then they probably did.

So why did Cameron sack Loughton? Is he quite mad? He was effective, he knew his brief VERY well (even social workers speak highly of him) and he did a good job.

So come on Cameron - what happened? Did he drink the wrong Viognier? Was he not wearing the right loafers? Is his postcode not quite the ticket? (You need to watch this one, as sadly, you need MPs from all over the country, not just Notting Hill)

Maybe Tory Tim knows, but I for one, am mystified.

Sunday 2 September 2012

What DLA has meant to me.

Just over a month ago, the DWP finally decided that they'd made a mistake and I DID qualify for DLA after all.

It had been 18 months since my original claim. It took 9 months to reject it initially, then a month or two for them to "reconsider" (they still rejected it) then another 6 or 7 months waiting for a tribunal.

As we waited, my family was poor. I mean really POOR. In fact, much like the UK, we were in deficit every month. There was not enough money to go around. We still had to pay our rent - everyone needs a roof over their heads, though we sold our home and lived off the profits for a while. Then we moved to a smaller flat from a house to save money, when our savings had all gone. It wasn't enough.

We still had to pay heating and lighting bills and we had to buy food. Because of my crohn's disease, we had to buy good food. No £50-for-a-fortnight Iceland runs for me. Nope, I had to somehow buy lots of fresh fruit and veg, good quality meat and supplements with no money. I always felt guilty.

Damn but I was resourceful! I went to good butchers and flirted them into saving me all the old bones from chickens and lamb. I made stews and ragouts and soups from the bits no-one else wanted. I made a chicken last three days. I only bought the slightly mushy veg going cheap at the end of the day. I could spot a yellow "reduced" sticker from 50 paces.

Every time I put the heating on I felt guilty.

We rationed loo-roll.

We only took the kids to do free things.

We couldn't afford presents when the other kids had birthday parties.

My Mum bailed us out at the end of most months.

Everything we owned had either broken or gotten too small or had holes in.

I had never bought new clothes for my kids. Every last item they possessed - including shoes - were hand-me-downs.

But you know, I don't list these very few things in an everyday life for pity, it doesn't work like that. You don't realise how poor you are. I mean, you know you're poor, but you stop realising how much of your day is taken up with just managing poverty.

So, last month, we had run out of options. We were in debt. We had no more credit. We'd borrowed money from family and couldn't pay it back. We'd missed a rent payment. In short, we were screwed.

Then, suddenly, out of the blue, the nice lady from the DWP phoned, and it had all been a "mistake".

But it didn't end there. Not only were we told that I would be getting the higher rates of both the care and mobility components of DLA, but everywhere I turned, money mushrooms sprang up in my bank account like the night after rain.

First, the people at the council wrote to tell me I was entitled to housing benefit. They too backdated it to the date of my original DLA claim.

Then the tax credit people wrote to say I was entitled to a disability element. That was backdated too.

The DVLA wrote and told me I could get free tax for my car - which was just as well as, unable to pay, we were just about to SORN it, leaving me even more isolated.

There are probably more things, but it all got a bit jumbled.

Ever since, cautiously, Dave and I have started to realise that life is a bit different. I can get the food I need. I bought a comfy, marshmallow bed - after all, I spend a lot of time in it! We went to London for a hospital appointment and paid for transport without feeling guilty. When I've been exhausted, we've got prepared food or take-away. We bought the kids school shoes. We fixed our curtains. We got a freezer (I only had an ice box before) we replaced the microwave that was condemned and rusty.

And here's the point, my life changed. I had been so worried all the time, there had seemed no way out. The constant pressure and fear had weighed me down without me even noticing. It was just life. But as soon as we got the help we needed, the help we had always qualified for, the pressure lifted. When people asked how I was, I said "fine" even though my symptoms were just the same. I did some "nice things" and started to get a bit of strength back. I felt less ill, just because I was less worried.

I had a life.

But it is that life that seems so begrudged today. On every comment thread, from the mouths of every minister, in every paper, it is that life that we are to be denied.

Stay at home, don't be seen having fun - there may be a Daily Mail lens trained on you. For goodness sake don't have a big TV or a nice car. How dare you go out for dinner or drinks? How dare you spend MY hard earned tax money on cake? A HOLIDAY??? You're kidding, right?

But this is what is so wrong! First ESA, and soon PIP are designed for the incapable. They are designed to MAKE you incapable. Stay in bed, give up fighting, become totally bedbound and you will qualify - fight, and struggle to live the best life you can and you won't. You mustn't just be incapable of walking, you must be incapable of mobilising at all. Don't get out and about with aids if you have limited vision! Don't bend or stretch when you can. Don't get any exercise to keep you going for longer.

It is an utter madness. It is so ridiculous, it's hard to put it into words if you've always been hale and hearty. We are being disabled by the very system supposed to enable us.

These cuts dressed up as reforms are based on envy. A belief that those who cannot fend for themselves,  must suffer. Live the life I was living until last month. But that life makes you sicker, it makes you MORE disabled. The money is not going to those most in need, it is going to those wealthy ministers judge to be most in need and the two are so different they cannot be reconciled.

It's a sorry, sorry mess.

All I can think is that the ghosts of disability past, present and future visit Mr Grayling and Mr Duncan-Smith and scare the pricey pants off them. A night of terror, where the scales fall from their eyes and they see clearly why they have got it so wrong.

What else but personal experience could get through to these idealogues?

Saturday 1 September 2012

UK Uncut Video and DPAC press Release on yesterday's Atos Protests

Yesterday, I had the live stream of the DPAC protests (supported also by @UKUncut) against Atos and the DWP running on my laptop.

I popped into the kitchen to make a cup of tea and in the few minutes I was out of the room, police had attempted to separate protesters inside the building from the larger crowd of protesters beyond. It seemed to me that the police, walking two abreast, forced their way through the crowds.

When I came back into the room, people were screaming, scuffles were taking place, a woman in a wheelchair was protecting her child from harm by holding her close, putting her own body between the child and police. Another man in a wheelchair had his shoulder broken.

Were the police too violent? Were they provoked by protesters? Does it matter?

What on earth have things come to if sick and disabled people cannot protest peacefully and know they will be safe and free from injury? 

Here is the DPAC press release on the issue :

Also, please take a few minutes to watch this wonderful video by UK Uncut and DPAC all about Atos, "fit for work" tests, the DWP, and just how unfair cuts to sickness and disability benefits REALLY affect sick and disabled people :

Will Paralympians remain content to be part of the Cameron-Atos Show?

I was privileged to attend the Paralympic opening ceremony. A triumph of wonder and illusion. Wheelchairs flew with grace through the air, twirling, unfettered by earthly restraint.

It was a defiant call to a nation, a call for true acceptance. As the song reminded us, "I am what I am" no more, no less. Just as we all are. Spasticus Autisticus, banned just a few decades ago, showed how much more comfortable we have all become in our own skins. How much less we are prepared to tolerate.

But will the Paralympics remain an illusion, a magical few days where theatre and spectacle hide the many desperate realities facing sick and disabled people in the UK today?

Will our politicians take the stage, basking in a glory they have no right to claim? Will the public realise that every last athlete is human and fallible, just like them? Not superheroes or scroungers at all, but flesh and blood?

For all the smoke and mirrors, I'm sure this glorious spectacular was not free. It took cold, hard cash to light the lights and set the stage. Acrobatic paraplegics and soaring amputees were suspended by wires and harnesses, not thin air after all.

And to be all that they can be, every sick or disabled person needs support.

Just like illusion, you may not see it, you need not even really understand it, but it is our social security system that enables equality, participation and inclusion.

Politicians may claim our welfare state can be run on thin air and illusion, but it can't. Cut the wires and the show falls apart.

I hope, more than anything else, that the athletes, so privileged to represent our country before the world, will dare to stage a theatre of their own. Whether on podiums or in television studios, surely they will remember that they are part of a wider disabled community? The soldier who lost a limb in Afghanistan and received months if not years of intensive physio and support to win gold, will be only too aware that others who lose limbs will not have the same access to facilities and care.

The athlete with a broken spine, who relied on DLA to get to training sessions or to pay for the wheelchair they needed to compete, must surely want paraplegic children, today to have the same opportunities?

No-one exists in a bubble, however great the fantasy of the opening ceremony, it was not magic, it was illusion. The great feats we will see over the next week or so are not superhuman, they are born of blood and sweat, tears and opportunity. Opportunity, say it again. The luck to be in the right place at the right time. To be born to the right parents, with the right attitude. To have steely will and defiant fortitude. To be selected to compete at all. To have the cold hard cash to get to training or buy the right food you need to compete.

Athletes painfully aware of the selection process and categorisation of Paralympians, must surely see the irony of a "selection process" more arbitrary, more cruel, run by Atos but designed by government? Fit for work, classified to compete, both cause pain and disappointment, but one affects thousands, the other millions. We are all part of the same show, whether star or extra.

And with baited breath, today, millions of sick and disabled people in the UK wait to see if the stars will stand with the unknown, the unseen. The frightened and the forgotten.

Will they turn to the limelight or look beyond the set, designed so carefully to seem like reality? Will they raise their fists in salutes of protest? Will they tell the media our stories? Will they stand with us, as a community, aware as no-one else can be what it takes to achieve equality and inclusion?

We are only part of the way through the first Act. There is plenty of time.

No-one knows how the show will end but the athletes.

Will they dare to change the script?

I hope they do. The world is watching.