Turn a Blind Eye

I'm sorry, but something has been troubling me. I usually avoid the subject, but now that I'm actually in the situation, and it's personal to me, I feel I have a little more moral authority.

Just as planned by the government, my family now face a pretty dire financial situation, and I haven't even lost my ESA (Employment Support Allowance or sickness benefit) yet. As I've warned many times, sick or disabled people are already much more likely to live in poverty, so there was precious little room to accommodate the squeeze that Osborne is convinced we need.

So despite nights spent tossing and turning, evenings with notebook and laptop and spreadsheets, I just can't see any way out. We've spent years juggling and ducking and diving, we've already sold our house and any other assets we had. I can only see two choices left:

1) Go bankrupt. In about 6 months, our meagre little chunk of equity will all be gone and we won't be able to pay our rent any more. We will have to default on the bit of credit we have and presumably, throw ourselves on the mercy of the state.

2) I will have to get a job.

I've looked at some job sites lately in desperation. I usually end up faintly hysterical as I scroll through page after page of work that would probably kill me. I can't work full time, almost certainly wouldn't manage part-time and haven't seen a single position where I could work from home.

Nonetheless, as planned by the government, I have no choice.

So which shall I do? I don't think my pride will allow me to do No1 and I'm sure my body won't let me do No2.

And this is the bit I don't usually mention. How exactly is that different to a eugenics programme? If we all end up with no choice but to work ourselves to death, if sick and disabled people are forced into work they clearly cannot manage?

Think of it this way. There's a lot of talk about pensions being unaffordable. We know we have to work longer and find a way of paying more.

Now imagine in a few years time, the government decide an ESA type programme should be applied to pensioners. If you can work you must. If you are found "fit" to do any kind of work at all, you must do it until you drop or you'll forfeit your state pension. 69 and unable to walk? That's OK, you can type! 73 with cancer? That's OK, unless you take chemo by transfusion you can still do something. 82 and not senile? Well you could work in a shop!

It's exactly the same thing and believe me, if it seems totally unlikely and shocking now, that's exactly how severely unwell people feel. Of course in theory, we can be found "fit for some kind of work" just as an 80 year old could be, but does that mean we can actually work or that anyone will employ us? Would you employ a slightly incontinent 78 year old who takes twice as long to do anything as a 22 year old? Could you honestly argue that making 70 year olds find work would not shorten their lives?

Surely there would be outrage? Accusations of breaking our nation's covenant to protect the frail and the elderly? Claims of ageism and cruelty?

But perhaps, just as now, people would look away? Perhaps they would be convinced by the logic of such a bizarre suggestion?

There can hardly be a comment thread where someone somewhere hasn't resorted to this quote :

First they came for the Jews
and I did not speak out - because I was not a Jew.

Then they came for the communists
and I did not speak out - because I was not a communist.

Then they came for the trade unionists
and I did not speak out - because I was not a trade unionist.

Then they came for me -
and by then there was no one left to speak out for me.

The German anti-Nazi activist,
Pastor Martin Niemöller

Well, the quote is wrong, because first they came for the disabled. But no-one thinks they are going to get sick or become disabled. So they don't speak out. Would they speak out for the pensioners too or would it be too late by then?  

Who cares about Rebekah Wade's job?

Our media have allegedly stooped to a new low of disgusting corruption - a low that is universally condemned.

So what is the story today? Will Rebekah Wade keep her job!!

Who cares? If she goes, another cut-throat, immoral, lying News Corp clone will take her place. How convenient that we're all sitting around debating her great big pay check and whether she'll lose it in favour of a huge golden handshake, rather than discussing how we can control the out-of-control power of a few men who own half the world's media?

Will anyone honestly remember Ms Wade in a year or two? Will they even remember this scandal? No.

Will they still be controlled by Mr Murdoch and the few eye-wateringly powerful men like him? Yes.

Will he still be able to print pretty much what he likes, deciding the outcome of elections and political policies around the world? Yes.

Will there be a new set of editor-vipers and journo-terrorists and detectives dreaming up even sicker ways of getting the next big story? Yes.

I really wish that today, we were talking about how we stop this, how we make sure something like it never happens again and how we think about limiting the power of unelected media-moguls.

Charities mount legal challenge over cuts to Disability support.

This is a post from my good friend and campaigner @crimsoncrip http://crimsoncrip.wordpress.com/2011/07/03/win-or-lose-dla-legal-action-is-golden-opportunity/
If I'd have written about the judicial review, this is pretty much what I'd have said. I particularly agree with the sentiments that by coming together we've achieved great things. Many thanks for agreeing to let me share it here. 

Win or lose DLA legal action is golden opportunity

As a group of major disability charities launch a legal challenge against changes to Disability Benefits, many activists are holding their breath. Its a move many of us ‘ordinary’ campaigners wanted, and know is needed, but couldn’t undertake, because of the skills needed, and the cost involved. The fact that many ‘major players’ think its worthwhile gives us hope. If they succeed then they will force a wholesaale review of the cornerstone of disability welfare reform, with the potential to stop changes, that mean many current claimants would have lost benefit or seen major reductions in entitlement. If it comes, their victory will be one for all campaigners, many of whom have fought reform over two goverments. The ‘death’ of Disability Living 
Allowance has long been heralded, but the fight to save it is now at a key stage.


There is no doubt we want the bid to win, and many will cheer till they are hoarse if they do. However we have to be careful, it will be a bitter battle, its not guaranteed, and it may be lost. If thats the case, their will be much disappointment, and for some it will become too much, they may stop fighting. However if handled 
correctly, the aftermath can actually become a different kind of victory.


Those who know me well know I have little time for ‘parent charities’, those who work for, but definitely not with us, who largely ignore us, and claim to represent us, without ever consulting us. I also have no time for the ‘more crip thn you crip’ game some organisations are known for, the view that only their target group matter, and that the rest of the disability community can fight a different battle. This time around our fight though difficult, has been made easier because all crips recognise common aims and problems, and along with the rep organisations we are working together, not just with each other, but with disabled people, as equals, to gain rights for all disabled people. Cynical as I am, I find it difficult to believe that this bid is anything other, at least in part, than a timely response to the concerns and views of ‘rank and file’ activists who have long and loud expressed the view that this is the only way forward, welfare reform had to be stopped, and it could only be done via legal challenge. No doubt many, I include me, would have preferred this to be crip led, but the skills needed, and the cost makes it impossible. I support this action wholeheartedly, it is the right move, at the 
right time, and by the right people.


There then is victory number 1. Like other minorities before us, we forget our differences, concentrate on our sameness, fight together for each other. We have also learnt to use our rep organisations skills and resources to further our cause. Probably for the first time in the crip rights fight we truely are ‘all in this togeth, the fightback has begun.’ We have recognised that there is strength in numbers, and joined together to reach 
common goals.


‘First they ignore you, then they laugh at you, then they fight you’. A quote from a fellow campaigner, Sue Marsh. She used it to describe the stage we were at in our battle. I’ll add to it, then we fightback. This is the stage we are at now. I doubt the Government expected this, not in the textbook this one. Crips are meant to sit in the corner ‘basketweaving’. It is not expected, that a) we will recognise the law as the way forward, and then b) collectively use it to force major change. Purists will say its not crips but its the charities that are doing this, I’d concede that. I have though absolutely no doubt that the momentum and ‘climate’ change has come from ‘ordinary’ disabled people, who have sensed the need for, and embraced the changes in the rights movement that made this challenge possible and realistic. Those leading it, have had to do what diaabled people have also done. Forget the differences, embrace thew similaries and fight together.


Victory two then, finding the means to send the ‘enemy’ a strong and meaningful message, prove that you are up fpr the fight. Legal action is a pretty powerful message anyway, a judicial review is never undertaken lightly. Surely this time the Government will know we mean business, and will take our fight all the way to the wire. We are no longer the easy target they want us to be. They want to make laws to harm our rights, then they must accept that we in turn will use the law to stop them. Hit for hit, let nbattle commence.
Remember the pensioners, their rights were threatened untill they fought back, greypower means that now their situation is generally considered much more carefully before decisions are made. Crippower, my word for it, call it what you like, can do the same. Whatever the outcome, this battle as a whole has shown, that the collective force, and action of disabled people can make a difference.


Victory 3, Crip Power is born, disabled people supported by their representive organisations are a force to be reckoned with, because make no mistake, do this once, and we will have proved that, come the next fight we are no easy target. Mr Cameron you have had your ‘fun’, the gloves are off, and we now fight together to take our rights.


Make no mistake, win or lose, our rights movement will never be the same. The fights among ourselves clearly over, our fight together goes on, and our will to win will not be broken.


If any other organisations or individuals involved in the Judicial Review or in fighting this aspect of welfare reform wish to have a link in this piece please leave it in comments, and I’ll add it.
.
Thanks is due to anyone who has done anything, past or present, to advance our cause. Your collective actions are part of what we are now, a real force to be reckoned with.

But patients are so THICK!

Aaaaaaaagggggggggghhhhhhhhrrrrrrrrrrr!!

That is my scream of frustration at the NHS. I have splurged many such screams over the years, too countless to mention.

Today's farce :

I have had a really nasty chest infection. I also have osteoporosis and have managed to pop/snap/crack a rib coughing. It's the third time in 2 months that it's happened.

I also have a crohn's flare and my hospital consultant in Cambridge wants to start me on the chemo-style shots again.

Before I can start the treatment for my crohn's (priority No1), Any infection must be eliminated and there needs to be a reason I'm getting all this pain in my chest. This must be coordinated here, through my GP.

This is where "integrated care" comes in.

So, GP faithfully writes an X-Ray request that says "Chest infection, check before commencing Humira"

I know that osteoporosis fractures are very difficult to see on an X-Ray and ask the radiographer to make a note on my notes that these must be eliminated too. (Consultant specifically asked me to tell them this.)

Radiographer says it's not on the form.

I say I know, but if not checked now, I'll just be back for more radiation, which is to be avoided in someone like me as much as possible.

Radiographer pats me on the head, throws me a dog biscuit and tells me GP knows best.

I say that, no, my Consultant knows best and would it be possible to speak to someone in charge.

More conflabs.

No, it isn't possible, now be a good girl and if there's any problem the radiographer will write to the GP, who will write to my consultant who will write back to my GP........

I explain that the Consultant stressed I must explain that the Humira is very urgent and if it would just be possible to speak to someone in charge, it might save lots of time and money.....

Radiographer is blushing and awkward - we have reached an impasse!

So this is what will now happen. A Consultant radiographer will get a heap of X-Rays tonight, glance at them, see I have no chest infection and write to my GP.

Addenbrookes will ask whether there were any fractures - the radiographer will say "I wasn't asked to check to fractures....."

And all because I'm the patient and couldn't possibly know anything about my own care.

In a few more weeks, I will have to have some other kind of test to get to the bottom of the pain and meanwhile my crohn's will get worse. If it gets too much worse for too long, I will grow another blockage and end up costing the NHS tens of thousands in in-patient stays and surgery to sort it out. All because I can't be trusted to tell an X-Ray department to simply write on the X-Ray notes - "Patient also has osteoporosis and fractures should be eliminated."

Now, as you know, I'm no fan of the coalition, but they do talk an awful lot about integrated care. If they could truly improve the system so that patient's weren't treated like a slightly slow relative you'd rather ignore, then I feel I could forgive them rather more of the disasters they are brewing.

If anything else ever goes wrong with my useless body (which it does with boring frequency) it is like trying to herd treacle to get anyone to understand that the two things have to be dealt with together, not as isolated events.

Last year, I ended up with 4 abscesses on my teeth because of the Humira (immuno-suppressants). Because of my health complications, no-one would take them out at a dental surgery, so I had to wait 5 MONTHS with raging pain and infection before they could be taken out in the hospital and I could start again on the crohn's treatment. Why 5 months? Because no matter what any of my doctors said, the maxillo-facial surgeons at he hospital just could not understand that the procedure was "urgent" not "routine". The crohn's made it urgent, but without integrated care this mattered not. The whole palava gave me a massive seizure and meant that by the time the teeth were out I had another blockage and....you guessed it.... needed expensive bowel surgery.

People like me, with serious, long term conditions are one of the largest costs to the NHS.  Acknowledging that and prioritising integration of care could save billions. It could also stop me combusting one day from sheer frustration.

Bring it on condems! If you manage this one thing at least, you will have improved long term patient care immeasurably.

To Strike or Not to Strike? That is the Question.

When Labour released the winner of it's public poster campaign during the 2010 election I had a massive facepalm moment.

Of all the messages they could have chosen, making David Cameron look like the anti-hero of a popular cop-drama did not strike me as well thought through.

Today, I'm wondering just which crystal ball the designer had at his disposal. We've had month after month of Thatcherite policy announcements and now we get the Tory Holy Grail of a Strike.

Without strikes, the Tories flounder like fresh caught ells, thrashing around with no-one to blame for their disasters. The divide and conquer of setting the "deserving poor" against the "undeserving" the "immigrants" against the natives, the strong against the weak, the rich against the poor, gain little traction without the great, evil sceptre of picket lines to scare us with.

They don't negotiate seriously, because they need to set us against each other. From the first day lost to strikes, George Osborne will start to blame his economic disasters on ordinary people. The "wrong kind of snow" will become the "wrong kind of public" and positions harden around the country. "Do you support the strikers?" "Did you see those scabs?" "Bloody Unions" etc etc until battle lines are drawn in every working-men's or country club in the country.

Well, it's really not difficult. My 6 year old asked me about the schools closing a few days ago. He asked me why. I took off my rose tinted specs and tried to explain as fairly as I could.

I explained that teachers believe they're being asked to work longer for less money but to pay more. He thought for a minute, then asked me if David Cameron was doing it too. I said no. He said that wasn't fair. I told him life wasn't fair and people were getting older and living longer and we just had to find more money for people's pensions.

He, however, was fixated on MPs and the Prime Minister. "Does everyone have to pay more, work longer and get less Mummy?" I said that no, this strike was about teachers and other people who work for us. He didn't think that was fair either. "Well, they should make everyone do it or no-one at all" was his confident reply.

"But why are they striking Mummy? How does that help?" I said that they felt the government weren't listening to them and going on strike meant that people came together to show the government how important the jobs they do are, just in case they've forgotten. I tried to explain that strikes were the very, very last resort.

He pottered off and came back a moment or two later frowning. "Are my teachers striking Mummy?"

I replied, no dear, I didn't think so. He frowned more. "Why?" "I don't know dear, people don't like to close schools, they think children are too important."

In childlike innocence he told me that "teachers are important too though aren't they Mummy?"

(Hubby was loitering in the background to make sure there wasn't a trace of partisan reply...)

"Can you make me one of those badges Mummy?"

"What badges dear?"

"The one with a J and a 30 on it that you've made for your Labour people?"

"Why?"

" I want to wear it to school on Thursday."

"You do? But what will you say if a teacher asks why you're wearing it? You're 6 dear, they'll just think Mummy made you wear it. If you want one you have to understand why you're wearing it!!"

(Said with the breezy assurance of one who still takes a teddy to bed.....)

"Oh, I'll just say I'm wearing it because I wish they were striking too. Well, until David Cameron gets the same pension as them, anyway, then it'd be fair wouldn't it Mummy?"

What could I say? It's so easy without the nonsense of Westminster and politics isn't it?

I still don't know if I'll let him wear his badge today. He won't remember what day it is, he's 6. But I'm tempted. Because our children shame us with their simplicity. Perhaps it wouldn't do any harm to remind teachers that even a child of 6 can see that their situation is unfair and is willing to take one tiny step to support them.

Time to Choose. Will YOU fight with me?

I started to write about the Compass conference at the weekend which, frankly, was an unmitigated disaster from start to finish. If it could go wrong, it went wrong and I was just so sick I barely knew my own name. The one silver lining was the actual seminar on welfare itself which was triumphant. The "most interesting welfare debate ever, surely?" seemed to be the consensus.

I was interrupted this morning by a doctor's appointment, where, yet again, I have been sent home to bed, my laptop is to be confiscated and I have to rest on pain of a hospital admission on Thursday if I don't improve.

I've had 7 weeks now of a crohn's flare that screwed up my immune system, which led to a virus, which turned into a chest infection. If I don't get better, pneumonia is just a blink away.

And all I really wanted to say before I am exiled to a world without even my cyber friends, is that this is why politicians do what they do. And they do it because we let them.

The last few months have taught me that welfare is the murkiest department of all. Crammed with hard-liners, right-wingers, hang-em-an-whip-em, scrounger-crushing, hawks. There has only been one narrative for about 30 years - "How do we stop paying people who are sick?" This has been based on just one assumption - that we're all the man Ed Miliband met with a gammy leg who could be doing something else. Or we're dying of cancer. There's nothing in between.

I don't exist in their ignorant model of disability - or many other people's, Compass taught me that - and should any of us get beyond our station and dare to fight them, dare to speak out and try to make people see, they can be pretty confident that the fight will kill us before anyone's really noticed. Lets not forget the thousands who are so profoundly disabled they don't even know what is being done in their name - they can't argue back can they? An easy target for welfare-psycopaths. (definition : "the inability to form human attachment^[3] and an abnormal lack of empathy, masked by an ability to appear outwardly normal.")


I am disgusted by my country - that's the truth of it. Disgusted at what passes for parliamentary research, disgusted that lives can be sacrificed on "assumptions", disgusted with the Machiavellian power struggles that dull even the brightest political stars, disgusted with the arrogance of politicians who never bother to respond, disgusted with a media who choose to look the other way. 


But most of all I'm disgusted with myself. Because however hard I try, however determined I am, however much I want to do this, it's killing me. My stupid, useless body just can't keep up with my perfectly capable brain. However I try to coerce it, or pamper it or persuade it, it just won't play the game. Those politicians who are so convinced that we can all just pick up our beds and walk might want to spend a week with me for living proof of someone trying to do just that. They might want to see what it's doing to my life, to my family and friends who get more frightened for me by the day. 


But daily I become more convinced that there isn't a scrap of evidence in the world that will make these politicians think again. No statistics, no facts and figures, nothing. It doesn't matter how damning the studies, how wrong we can prove that they are, they just plough on regardless, supremely confident that hurting us is  a price worth paying. They know what they want to do and they're just going to do it regardless. It's OK, sick and disabled people have no union, they can't strike, they have no powerful friends or glamorous celebrities. They're too tired or sick or disabled to fight, so don't lose any sleep over them. 


Don't want to put disabled access into your 4 star central London, newly refurbished hotel? That's OK, we won't complain. Don't want to actually find us work we could do? That's OK, no-one will ask where you fell through the cracks. 


And I'll leave you with this. Anyone reading this who thinks I'm just being a bit dramatic might want to think about the bits I don't write about. The real stories behind all of this that would just make me sound like a screaming conspiracist. The "just between me and you" conversations about politicians or spin doctors that I can't repeat or share. Frankly, my ears are bleeding and I wish I didn't know about any of the sordid, astonishing mess. 


As Kaliya concluded in her session at the conference. "We have a choice. We can do this. We can push these reforms through and change the very nature of how we treat the most vulnerable in our society. We can follow the path of 1930s work programmes, institutions and eugenics once deemed acceptable both here and in the US, Canada, Japan and elsewhere and we can turn our backs. We can decide that the sick and disabled have little rights to basic dignity. 


Or, we can open our eyes, start to listen, and think NOW, together about the kind of society we want to live in." 


But we do have to think now. Because very soon it will be too late. And I think I can assure you that politicians of all parties are going to go for the first option. As a society, we have to start to look behind the scrounger wall they are building around us and decide if abandoning us is a price worth paying. 


**I'm told it is bad form to be too pushy, to ask for your support too often, but screw pushy. Before I go off to bed, will you just RT this please? Post it on your Facebook walls, send it to your friends, or your MP. Tell people. Tell them we need their help. Thanks. 

There's No such word as "Can't"

Growing up, my Dad had a few choice phrases that he must have used daily :

There's no such word as can't
Life's not fair
Watch the tiger when it's licking your ear.
Never sign anything

Thank God for Dad really. I'm not sure I'd ever get out of bed feeling this rubbish, but every time I want to say "I can't" I remember there's no such word as can't. And I get up. And I go on.

When I get sick again and watch another dream flushed down the toilet by my stupid failing body, I briefly think about a moan, then I remember life isn't fair. Don't expect it to be.

When I lobby politicians or chat with strategists I never ever forget that tiger. He can only be licking my ear because he's hungry.

OK, I've adapted No4 for a cyber-world, but I never, ever, put anything in writing on twitter or my blog or facebook that I think I might regret. I never bite.

Good old Dad eh? Prepared me for the murky, self-serving, Machiavellian world of politics without even realising. Prepared me to drag my crappy body on and on through a very, very, difficult life and somehow keep a semblance of still being human.

Funny how things work out isn't it?