Links for my Interviews Re Black Monday

We've all been fighting the good fight in the media in the run up to Black Monday. Here's me on Sky News, LBC Radio and BBC Radio London.

http://www.latentexistence.me.uk/bedroom-tax-and-esa-in-the-news-31032013/

http://www.latentexistence.me.uk/black-monday/

Thanks as ever, go to Steve Sumpter, who records and posts these appearances for us.

So How Am I?

As regular readers will know, 8 weeks ago, I had yet another major operation to free up my petulant and sticky bowel from the knots and tangles it insists on forming.

I had reached the stage of continual vomiting, terrible pain and food and I were waging our familiar battle. Could I get enough of it in - and keep it in - not to disappear entirely? A shadow against the pillows where Sue used to lie?

After months of prevarication, medics and surgeons finally agreed that "something had to be done". The problem this time was what? Was there actually anything a surgeon could cut away, or open up that would improve my life? Or had I reached That Place?

We don't talk about That Place in our house. It is not somewhere we are prepared to go. It is a place without hope, without joy. A place with no food, where I am fed into a vein, perhaps forever. A place where strong opiates get me through the day, fogging my brain, making me anxious and insular, sweaty and itchy. A place where my world shrinks to the four walls of my bedroom, surrounded by vomit bowl and needles and tubes. A place that doesn't accommodate children or husbands or friends. A lonely place of survival.

After the operation, the surgeon was quietly grim. He explained that my bowl has had so much surgery, it just won't work any more. He insisted vomiting and pain and skeletal fatigue were to be my regular companions. Get used to it. Succumb. Give up.

I ignored him, because that's what I do.

But recovery didn't go well. Sure, the pain eased a bit in the sticky places he had unstuck, but the vomiting never relented, as it normally would. My weight didn't creep back up, I lay pale and pinched against supportive pillows, unable to get to the toilet, unable to eat more than a few meals before my bowel refused to play and returned my food to me un-processed. I lay in bed and watched the days drift by, every day getting more and more frightened that Mr Gloomy Surgeon might be right.

Last week, we dragged me out of bed and into the car for my follow up appointment with Mr Gloomy. I couldn't walk, could barely eat, I looked like a skeleton. He took one look at me and pushed my wheelchair gently into his office.

This time he was firmer. See? Your bowel really WON'T work. We've done all we can. You won't put on the weight, you won't be Mum again, you won't be lover, only patient. His prescription? Go home, be fed into a vein, take regular opiates and anti-emetics and antibiotics and maybe (he paused) think about a transplant? My bowel, he said, was just too still, too sleepy, he had no suggestions for waking it up. Get used to it. Succumb. Give up.

Now I don't do giving up. His advice seemed contrary. If my bowel had gone to sleep, surely sitting around in bed all day would keep it that way? Add in regular opiates and it would sleep even more soundly? Stop putting any food in it at all and it would have nothing to even challenge it back to life? Nothing to contract against?

Something in me got angry. If my choices were : Accept more pain, accept you will vomit a lot OR give up and play dead, it seemed to me it was time to man up still further and prove him wrong. If crohn's and it's effects insisted on taking me to a new level, then I would just have to meet it head on and (excuse my language, sometimes it's all that will do) tell it to fuck right off.

So, from that very moment, I manned up. I got up in the mornings, however reluctant my legs were to carry me. I teetered painfully to the toilet, I inched agonisingly around my nephews wedding at the weekend, chatting to family and friends. (Fell on my arse a couple of times)

I googled "gut motility" and invested in a whole regime of supplements and snacks that might help - magnesium for muscle function, zinc and B12 as I'm always deficient in them, ginger essence for vommy moments, acidophilus for healthy gut bacteria. Folates and Vitamin D to improve my energy. Nuts and dried fruit to snack on for fibre and muscle function. I kicked the opiates into touch. Finally, I started a regime of gently building exercise to improve my strength and deliver me back to the people I love.

I ate, however much it hurt. If I was sick, I... well, I was just sick and got on with it. I went back to my kids and my husband with gritted teeth. That Place is not for me. Not yet. Hopefully never.

We always have a choice. Always.

However bleak things seem, however academically and clinically surgeons and medics make their textbook proclamations, we ARE masters of our own bodies and masters of our own destiny.

Will I succeed? Well, it seems to be going OK so far. It hurts. Whoaaaa it hurts. And it's a little hard to hold a conversation down when my lazy, recalcitrant bowel decides to move into reverse, but it's a billion times better than the alternative.

As for Mr Gloomy, I have a plan. It sustains me through the pain and vomiting and makes me giggle. At my next appointment, I will march into his office on stronger legs and in the nicest possible way, flip him the finger. I will be shinier, fatter, stronger and vindicated. I WILL.

And perhaps he will learn something too. Perhaps he will learn that the human spirit is full of miracles. That there really is no such word as can't.

Wish me luck xx

BREAKING : #BedroomTax faces legal challenge

Fantastic News!!!

Following literally months of work (particular thanks I believe to Jane Young and Sue McCafferty, Wearespartacus.org.uk) they've just announced An "urgent" Legal Challenge (Judicial Review) has been successful granted over the #BedroomTax !!!!

The article explains how 

"Leigh Day are taking legal action on behalf of two disabled adults. They claim that new housing benefit regulations, due to come into force on 1 April 2013, are discriminatory, as they will have a far greater ‘devastating’ impact on disabled people than on non-disabled recipients of the benefit."

It goes on to say 

"The Court has ordered an urgent hearing at the beginning of May; we hope this will mean that the terrible anxiety our clients and many others are currently facing will be short-lived.”

You can read all about it here : http://wearespartacus.org.uk/government-fails-to-prevent-bedroom-tax-challenge/

Huge congratulations to all involved. This is a really significant step forward. As the government's welfare reforms face new legal challenges by the day, campaigners everywhere are showing we will take our issues as far as necessary to see justice. 

Time Limiting ESA - The Reality

Regular readers will remember how very hard I and others fought the Time Limiting of ESA proposed in the Welfare Reform Bill. For me, it was the most disgusting proposal of all. We won an amendment in the House of Lords that promised "AT LEAST 2 years". But the government simply overturned it using financial privilege. 

The following real life story, beautifully written by Tricia Long, a supporter, shows why we were so right to fight and why the government MUST reconsider this terrible betrayal of sick and disabled people. For the 700,000 people estimated to be affected, just like Tricia, please share her story, it deserves to be told.

"I have epilepsy and experience 3-4 seizures a week which leave me tired, disorientated often emotional and quite vulnerable.

In between I attempt to maintain a “normal “ lifestyle but have obviously had to adapt this to take into account my seizures that have no real warning  signals or particular triggers, although they are exacerbated by stress and tiredness.

About a year ago, my long term Incapacity Benefit, which I had been receiving for a number of years, became Employment Support Allowance.

At the time I didn't fully understand the implications of this, in particular the time limited aspect of it, although I did feel the language set the tone of what this benefit represents.

I filled in my form and was duly placed in the work related activity group (WRAG). This surprised many people who know me and understand that my condition does not really make me fit for conventional employment.

However I was already becoming upset by the process of having to give the worst case scenario of my condition in order to “justify” my benefit and bought into the idea that perhaps this new policy would be enabling rather than disabling - many of the previous disability benefits had been - maybe this would be a positive thing.

I decided not to appeal the decision but grasp the potential opportunity it might offer me to support me into some employment.

I was very let down and disillusioned by what happened next. The tone of the letters I received from DWP were aggressive and seemed to assume that I was not working through choice rather than disability.

I was referred to a private job agency, JHP, and my experience just got worse.  I was by this stage becoming quite upset and angry by my experience but still felt that maybe it was not representative of the policy as a whole.

I was actually told by my support advisor that I was a bit of a “health & safety hazard”. It was obvious that JHP were still working on a job seeker allowance model.

At that time they certainly did not appear have anything in place to understand or help me with my individual barrier to work (mostly unconsciousness!).

They offered basic skills, basic computer work or a CV writing service. If these were all I needed then I would have been working already!

After some initial contact they seemed keen to emphasis the voluntary work I already do for AWP, our local mental health trust and encouraged me to put this down as self-employment. As I’m unpaid apart from occasional minimal expenses and coffee, this seemed unreasonable.

I have not heard from them more than a couple of times since and do feel let down; upset by the wasted opportunity and quite frankly the wasted public money.

I do believe that due to the “payment by results” model   I have become one of the many “parked” as a difficult-to-place-in-employment ESA client.

I think I had been living in a state of slight denial, as I had become increasingly aware of the iniquities of the welfare system and so called “reforms”.  I had used the anger this inspired get involved in social media and more mental health activities as and when my condition allowed. I heard many stories of people much worse off than myself and I forgot to worry about what was in store for me.

On the 12^th March 2013 I received the dreaded brown envelope telling me that the new law (Welfare Reform Act, 2011) states I can only receive contributory ESA for 365 days - and mine were up on the 8^th March 2013.

I was no longer entitled to this benefit. It is surely not beyond the ability of the DWP to send out these letters before payments actually stop or do they expect us to have a countdown diary?

The letter pointed out that if I live with someone who works 24 hours a week I will not qualify on income grounds.

Surely 24 hours at minimum wage would not be enough to be expected to support a disabled person as well as yourself? Who actually thought that bit of the policy out?  

My condition has not changed so therefore I presumably would still qualify on medical grounds. I feel incredibly let down by this process.

How can it be justifiable to remove my support after an arbitrary number of days decided by a politician not a doctor?

I feel devalued and quite despairing that I am now being judged merely on my ability to work conventionally. It feels like this policy is “one size fits all” and takes no consideration of the wide range of disabilities included in the apparently “fit to work with support” WRAG group.

It takes no account of the unpaid contributions I have made to society despite my disability.  

I have not recovered miraculously during this period or received any help to become ready for any sort of employment that might potentially support me - how can that be considered fair?  

My husband runs his own business. He is also bi-polar and at times experiences the mental health problems that go with this condition.

Together we manage to maintain a balance most of the time, but he has had to be hospitalised several times in the last few years when his symptoms got out of control.

He has never claimed benefit for this condition and when well, he pays a considerable amount of tax back into the economy. He must now manage his business, his own mental equilibrium and care for me when I’m unwell and can’t do much for myself.

When the phone call comes from the paramedics that I’ve had a seizure, he must drop everything or organise a rota of friends to step in when he can’t.  This he does willingly.

However added to this he is now totally financially responsible for me. In many ways I am lucky he is ok with this although I struggle with it very much as an individual. I feel it makes me dependant and not able to even contribute a little to my own living expenses.

I also worry it will add pressure on my husband’s mental state.  His condition makes him very functioning with a great need to achieve. I hope this will not tip the balance we work hard to achieve and result in a mental health reaction.

Quite frankly the DWP letter made me cry and I am not a crier. I generally cope well with most things life throws at me but admit I now feel very stressed and anxious.

I feel insecure and slightly out of my depth with what to do next.

I’m trying to be positive but have not slept well for the last few days and have experienced more seizures than normal for me. Surely this is not the “enabling” experience the government profess to want for those with long term health conditions?

  

This - like so many things - is very short sighted thinking. It may only result in moving cost from one budget to another. If I have more seizures, it will cost the NHS more. If my husband becomes more unwell as result of the additional pressure of caring for me, then the cost  will escalate still further as he will be unable to work and pay tax – possibly even needing more intensive mental health interventions.

And none of this even takes into account the non-financial but equally important cost to my self image as someone who is still living daily with a long term and quite frankly, disabling, condition.

I am quite resilient but do wonder about the effect it may have on my ability to continue to contribute to society in a positive way.

Surely this is not sensible policy? It seems to contradict the government mantra that “There is no health without mental health” and I feel strongly that the effect on many people will be profound and ultimately destructive.  

The only people who have benefitted from this at all as far as I can see are possibly JHP (and other private job agencies) being paid to provide a “not fit for purpose” service.

I recognise I am so much luckier than some as I don’t at the present time have to worry that it may take weeks to move my benefit from one type to another or how I will manage to live on no income in between.

I’m not destitute, but I do feel strongly that I represent a group of people who this policy has left feeling more disabled and devalued than ever before.

I am quite frankly afraid for both my future and the type of society we are creating for the most vulnerable in it. 

Ask Ed - So we did. Again.

Calm. Reasoneded. #Spoonies strike again. This time, although his answer is vague, Ed at least managed to get the name right and knows what's going on with the disability policy. It's progress Ed, but not as we know it......

The wonderful Steve Sumpter (latentexistence http://www.latentexistence.me.uk/ ) reminds Ed we haven't gone anywhere....And we want to KEEP DLA

Why won't DWP REALLY meet Spartacus?

Any of you who just watched the car-crash that was Esther McVey trying to undermine the credibility of the Spartacus network, might like to see the quote that upset ministers so much, they refuse to meet us and treat us like aggressive radicals.

The quote, picked out  from 100s of 1000s of words laid bare over the last 3 years. You can decide for yourselves if you think it justifies DWP not meeting leading disability campaigners.

"The WCA is a statement of political desperation. The process is reminiscent of the medical tribunals that returned shell shocked and badly wounded soldiers to duty in the first world war or the ‘KV-machine’, the medical commission the Nazis used in the second world war to play down wounds so that soldiers could be reclassified ‘fit for the Eastern front".

It is from a foreword to this report : http://wearespartacus.org.uk/wp-content/uploads/2012/11/The-Peoples-Review-of-the-Work-Capability-Assessment.pdfwritten by Peter Beresford OBE, BA Hons, PhD, AcSS, FRSA, Dip WPProfessor of Social Policy, Brunel University

Yesterday's Labour Workfare Masssacre

This morning, like the night after Agincourt, lefties like me scan the bloody, burnt out social media #workfare battlefield in the hope of finding twitching Labour corpses. There are none. Like the French 600 years before, a few generals at the top of the pile made the fateful decision to crush the weak and exhausted. Like the French, they were shown exactly why that's often not a very good idea at all. 

In the three years since Labour have been in opposition, nothing has described their fate better than the welfare debate. With minds stuck in an ideology forged around a gleaming new millennium, welfare was a comforting Blairite hawk to offset the freer doves of education, international aid and health. 

Tough on povety, tough on the causes of poverty. It suited Purnell, and Murphy and Cooper as they forged their credentials as "centrists" and who knows? Future leaders? 

So the argument goes : "It's a no brainer. The public think everyone on welfare is scrounging. (Except them) The tougher we are on welfare, the more people in the "Middle" and the "Shires" and the "City" breathe easy at night. (As long as it's not pensioners and it doesn't affect them.) Combining a little social justice elsewhere, with a good dose of judgement and steel in welfare = the chance of a majority. 75% of the public support workfare. Therefore, supporting the government on this is a chance to show we are still tough on poverty, tough on the causes of poverty. The Daily Mail fall gasping at our feet, they raise a glass in the gentleman's clubs, and no-one will listen to the screams of the anguished or weak, well, because they're anguished and weak."

Some around the shadow cabinet now look uncomfortable, shift in their seats. This is at least progress. Some mention the change in the welfare narrative lately. Opinion polls shifting, disability becoming toxic for the Tories, the increased media interest and above all, that behemoth of opinion formers - social media. But the hawks give the doves a little slap about and logic prevails. 75% of everyone or about 1% of the active, gobby probably-gave-up-on-us-anyway-leftie-activist-Face-Tweeps??? 

As has happened so often before, but had been happening less lately, the hawks won the welfare Agincourt, and they took to the commons. 

We on Twitter and Facebook steeled ourselves. Defeat had been heavily trailed on the blogs and had met with the grim opposition of the archer who knows he may be amongst small and ragged numbers, but he has all the arrows and the mighty have none. 

And so it proved. If the Daily Mail or the BBC even noticed Labour's unprincipled stand yesterday, designed to get them picked for the election team, there is little evidence today on a quick dodge of budget fever. 

But on Social Media? 

Oh Agincourt,

"Those few, those happy few those band of brothers. 

For those yesterday who shed their blood may have been a brother. 

Be he ne'er so vile, election day may have gentled his condition and Englishmen abed may have held their front doors wide as any speaks, that canvassed late, upon election day!!!"

For the return of precisely zero centre ground, floating voting, Mail readers, Labour managed to enrage and alienate 10s of 1000s of active, passionate, left of centre, engaged, knowledgeable, informed, opinion formers who are read by journalists and opposition alike - not to mention their own families and friends. 

Life has changed since 2000. Politics has changed. The economy has changed beyond all recognition. Living standards have fallen. Corruption seems to stalk everywhere now that gossamer veneer of "success" has floated away. 

But most of all, "media" has changed. Numbers of papers sold are plummeting, news figures freefall by their side. 

And every day, social media takes over. Sure, not the majority, but the vanguard. And they are the ones who care and think and devise and solve and organise. Just like any world paradigm change, it is the few who lead you to safety not the many. 

Every time Labour remembers that, they are rewarded with just a little touch of Harry in the night - Murdoch and Leveson, Gas giants and Loan sharks their names in our mouths bitterly remembered. 

We appreciate their company, there in the breach. 

But every time they take what they know is the wrong decision on principle, the response is swift and horrific. 

I won't pain myself more by sifting through the "I'll never vote Labour again" tweets or sifting through the debris of torn up membership cards and broken hearts. 

But Labour squandered so much more yesterday on a battle they could never win, and all the while they go on frittering away principles and viable voters on the wind of a cruel popularity it cannot win, our cause be not just.