"Another Brown Envelope arrived today. It's clearly marked from the Department. My neighbours might have seen, but I think I got it in time. It told me I cost too much. They're stopping my money next month. I am a Useless Eater. What will become of me?
They "assessed" me. Forced me to strip, made me touch my toes. It hurt, pain ripping through me. He never looked at me, said the pain didn't matter. He asked if I ever watched the TV. I didn't know how to answer? Was this a new trick? There have been so many. I nodded. He spat the question again "Answer me please". I said I did. The room was small, airless, cameras watched from every angle, moving as I tried to move. Grills at the windows. Grills at the doors. One time, I had to climb a flight of stairs. When I couldn't they stopped my money.
That brown envelope said I could work. They have work programmes now. We work for free, they make us. I don't know when it will end - perhaps it won't You can see my ribs, count them as I bend to reach the lowest shelves. I ate on Monday. Or was it Tuesday? I forget. The Minister said work frees us.
The letters. The endless brown envelopes, The logo makes my heart beat faster. I feel sick, terrified to open each one. The lawyers write to me, the advisers, the courts, the Department, the Providers. I don't understand them all but they never stop, they keep writing until you give up, until you are too worn down.
I saw a paper today. I didn't mean to. There, on the front page, the Department caught someone like me Outside. What was she thinking? Fool. She must have got the new directive? She must know we are not welcome Outside now? Perhaps she stopped opening the Brown Envelopes. I tried that once, but they sent someone to my house. Said I'd get no money at all for 2 weeks. The food ran out after 4 days. I always open the Brown Envelopes now. Eventually.
The paper called us cheats again. Scroungers, shirkers, we are "mugging the state". Every day, there on the front page. They print a telephone number. They get people to call it if they suspect a Useless Eater. Neighbours must report us now. The Department can follow you, take pictures, go through your bins. Check your bank accounts.
They say we're getting ID cards now. They'll list our defects. We must produce them if anyone asks. If a snarling, sneering bulldog of a man attacks me in the street, I must show him my card. The Department said it would make them stop, but sometimes it just makes the beating worse. Sometimes more join in when they see my Useless Eater ID. Another reason not to risk Outside.
I used to use a wheelchair, but it broke and the Department said I couldn't have another. Just as well I suppose. It makes things Outside worse. They said we couldn't afford it. I have to use nappies if I can't get to the toilet now, now one comes to help me get there any more. I live in one room now, use the walls and furniture to get about. It's easier, and saves on heating. The pills are in the drawer. I pretended to take them, but saved them up. The woman who came to change my bed and give me a bath used to make sure I took them, but she doesn't come any more. The Department say I don't need to wash below my waist. I've got lots of pills now. I think I've got enough.
The Department say I have to move. Well, I only use one room now anyway. There aren't many places Useless Eaters like me can go these days. Just the area beyond the river, on the edge of town, where it's cheaper. There are lots of us there. You can tell, because the curtains stay drawn. There is no bus. Another Department stopped them. It's far from the hospital now they've closed the one I used to go to. They stopped my drugs too, but it's OK, because I've got mine, safe in the drawer. They said it wouldn't apply to us, but it does.
I wonder where it will all end? I can't possibly imagine. Can't imagine things getting worse than they are now. I heard that some tried to protest, took to the streets! Outside! All around the world, they say! The police sprayed gas in their faces, hurled them back with water cannon. Closed their internet sites down so they couldn't tell anyone. Arrested some. One got dragged backwards, tipped out of his wheelchair . I suppose that's why no-one really knows what is happening to us. I suppose they couldn't do all this if they did? Could they?
Where will it end? Will it end?
Sunday, 18 March 2012
Saturday, 17 March 2012
Calling ALL lefties : Pooh or get off the Pot!
Before I start this article, I you haven't really read my blog much, you may not leave a comment calling me a tribal flag waving Labour floozy.
Because I have earned a big old badge that says "When Labour is wrong I will scream about it even louder you."
So now we've got that out of the way, let's also take it as read that Iraq, PFI, and civil liberties did not go awfully well, OK?
But I've read some comments so ridiculous lately, I have to wonder if these people are still living on the same planet as me.
Example 1 : "All that money Labour spent on the NHS went on lightbulbs, pot plants and new carpets"
Huh? Do you REALLY think that, or did the Telegraph tell you to?
The money paid for nurses and doctors and midwives and MRI scanners and getting waiting lists to an all time low and a 2 week cancer guarantee and improved it’s approval rating from the 40%s to the 80%s and made it the most efficient health service in the world. And equitable!! – did you know that? We have the most equitable health service in the world totally unrelated to ability to pay.
Because I have earned a big old badge that says "When Labour is wrong I will scream about it even louder you."
So now we've got that out of the way, let's also take it as read that Iraq, PFI, and civil liberties did not go awfully well, OK?
But I've read some comments so ridiculous lately, I have to wonder if these people are still living on the same planet as me.
Example 1 : "All that money Labour spent on the NHS went on lightbulbs, pot plants and new carpets"
Huh? Do you REALLY think that, or did the Telegraph tell you to?
The money paid for nurses and doctors and midwives and MRI scanners and getting waiting lists to an all time low and a 2 week cancer guarantee and improved it’s approval rating from the 40%s to the 80%s and made it the most efficient health service in the world. And equitable!! – did you know that? We have the most equitable health service in the world totally unrelated to ability to pay.
All of those things improved my life.
Example 2 : "Labour didn't save for a rainy day. They overspent before the crash, running the highest deficit of all time. Our debt got out of control.
Simply put, none of this is true. What's more I have absolutely no idea how Osborne et al get away with it. None. Take a little wander around this site :
http://www.scoop.it/t/deficit-myth
Ask what the IMF think, compare Labour's debt/deficit record with the previous Thatcher government (it was better on every count) The Tories backed Labour's plans right up until 2008. Since the coalition came to power, growth has plummeted, unemployment has gone up, welfare bills have risen, debt has gone up, inflation has raged, our credit rating is in jeopardy. I am utterly mystified. Every single indicator has worsened.
Now, it was far from a perfect world, but during the first 10 years of the Labour government, crime fell by 40% NHS waiting times came down from 18 months to 18 weeks, unemployment was kept low, inflation was kept low, growth was good, a million pensioners were lifted out of poverty with measures such as pension credit, winter fuel payments and free TV licenses. We had more police on the streets, more nurses and doctors on our wards and 200,000 teaching assistants in out classrooms. Labour introduced free childcare for 3 and 4 year olds for the first time. We got Sure Start centres and a minimum wage. We got a strengthened Disability Discrimination Act (DDA, Human Rights legislation (HRA) and Equality laws. We got a peace agreement in Northern Ireland and devolution for Wales and Scotland. Then there was a credit crunch. Led by subprime lending in the US
Since the coalition came to power, Crime has risen, NHS waiting times have risen, A&E waits are longer, there are fewer nurses and fewer midwives. Unemployment has risen, inflation has soared and growth has plummeted. Women are facing 3/4 of all the cuts, disabled people are facing a drop in income that may leave them unable to buy food, people on 43k will lose their child benefit. Frontline police numbers have fallen by some 5,000, legal aid is under threat and training for teaching assistants has been stopped. Sure Start centres are closing, the minimum wage has been frozen for young people, we might as well throw the DDA in the bin and the Conservatives want to scrap the Human rights act and homelessness is rising alarmingly - even here in affluent Sussex. There's still a credit crunch.
Now, all of that can be proven. You can argue separate points that you don't like so much, but just as an overview, I'm mystified.
How do the Tories do this? What's more how on earth have they persuaded Liberal Democrats to back them? That this is the right path? I mean you don't have to like Labour even a little bit to have a peek at the US economy following 18 months of Lab/Brown style stimulus and compare it with ours. (Their's is heading for 3% annualised growth, ours is heading for negative numbers and another recession)
Is it our media? Is it some kind of airborne thought control? A drug they are dripping into the water causing amnesia and the ability to think the exact opposite of the truth? Is it apathy? Is it boredom? I just can't fathom it.
I don't like the current Labour position on welfare, I'm almost constantly head-desking whenever they issue a press statement, I do realise they set a lot of these "reforms" up and I worry about the possibility of an election any time soon - they clearly couldn't run drinkies-in-the-proverbial right now, but on the whole - on the whole - get a grip lefties.
Start defending our record. Accept the bits we got wrong and move on, but for goodness sake, anyone claiming "They're all the same/Triangulation/They're worse than the Tories/I'll never vote Labour again"
Might want to ask themselves just how long they'd like to keep this cabinet of millionaires.
And just how much we're going to allow them to get wrong before we unite and fight.
Wednesday, 14 March 2012
RIP coalition, the NHS will outlast you all.
I had an odd sleep. You know, one of those nights where you're not quite sure you actually are asleep. My brain kept going over and over the NHS vote in the commons last night. A kaleidoscope of Punch and Judy, outraged lefties, pompous righties and every now and then, a quiet, pleading voice, trying to be heard, perhaps Graheme Morris or Andrew George.
Nonsense! No-one even listened to them. If you weren't making an impassioned speech that mentioned Bevan at least three times or spitting the word "Blairism" across the chamber, you might as well have gone home.
There was something very odd about watching twitter yesterday afternoon as the NHS Drop the Bill debate raged. The NHS supporters who had fought so hard to be heard went though an exact carbon copy of our Welfare Reform Bill angst - disbelief, passion, then as the votes were counted, nail biting followed by despair.
"Where are all the MPs? Disgrace so few attending debate"
"But! But! He's LYING!!!"
"I could kiss *(insert name of hero of the moment)"
"How can this guy be a Lib Dem? How can they do this?"
"This is so undemocratic!! How can they ignore us like this?"
"Vote soon - I can hardly watch"
"Hey!! where are all these MPs coming from? Dragged in just to vote without hearing debate? Shouldn't be allowed!"
"I feel sick - results in 5 minutes"
"Well, that's it then, we lost"
"The Lib Dems didn't even vote for their own amendment!!"
In just over three hours another few thousand hearts broke, another few thousand voters realised just how rotten "democracy" has become.
But, when it was welfare, I don't know, somehow I could kid myself it was just us. We were hardly popular were we? Compared to the Alpha male that is the NHS, trying to save benefits was like trying to make Katie Price demure. No-one really paid attention to our crucial votes, the media overwhelmingly didn't care, the public didn't have a clue what we were really fighting for and the opposition were hiding in a Starbucks muttering "Please don't notice we started all this."
But this was the NHS! These reforms are opposed by so many acronyms, it reads like a tin of alphabetti-spaghetti. 87% of the public think the NHS is awesome (about 1% think benefits are and we're all on them!!) And - crucially - this was the Tories doing all this!!
Now, Tories can kick Welfare til it gasps it's last breath and the crowds will cheer! Oh how they'll cheer! "More Iain! More Dave!" They'll scream.
But the NHS? The issue that made the Tories unelectable for well over a decade? The issue so toxic to Conservatives, Dave had to *Ringfence* the budget and make lots of "I really understand, honest I do" speeches?
So, here's what happens next.
Let's assume the bill passes. Even if it was the most kick-ass, studiously written, comprehensively wonderful bill of all time, the NHS still has to find 20 billion or so in "efficiency savings" *cough, CUTS cough*. Waiting times are rising, standards are falling, wards are closing, midwife numbers are dropping, A&E waiting times are soaring and there are fewer nurses. By 2015, the stats will read like a car crash. And remember, this is without the bill.
Now, you can't strike on benefits. You can't say "Right, that's it, I'm just not claiming your Disability Living Allowance any more" Cos, you know, you'd starve. AND Iain Duncan-Smith would be thrilled which kind of defeats the object. DWP ministers were always pretty safe in the knowledge that they could do what they liked with us.
But you just can't steamroller through changes to the NHS without the staff. Not without the surgeons and the nurses and the GPs and the radiographers and the physios. It can't be done. I'm astonished Dave and George didn't get the memo. They must have been on yet another foreign lobbying trip when civil servants held the "Sacred Cow" seminar.
Joking aside, there is only one possible conclusion. They heard Blair talk of the "scars on his back" from public sector reform, they heard him say he should have gone further and faster, and they made a decision that no matter what happened Lansley's health plans would go ahead. Just like they decided that no matter what happened, Dunky's welfare plans would go ahead. And Gove's Education reform..... and Clarke's Justice reforms..... and Gideon's money tree planting spree....
And the LibDems? Well, they will get the blame, just as they always do. As every Gran dies on a trolley in a corridor, as every bed get's blocked, as every hospital get's sold off to MacDonalds, every classroom is sponsored by Murdoch, every ill or disabled person starves quietly in their unheated home - they will get the blame. "They stood by and let this happen" will ring out across shires and cities alike. I have saved my LibDem hyperbole til now, just in case they redeemed themselves, but this step is the step too far. This of all is the step they can never recover from.
When I remember not to be devastated at the human cost, suffering and horror of a country picked apart, all at once, no stone of major-upheaval left unturned, part of me will sit back for the next year or two and enjoy watching Dave and George, Andrew and Iain squirm. As the privileged complacency falls away, the out-of-touch arrogance turns to doubt, I will be chuckling in a dark humoured kind of way.
As the little boys in the playground realise their game has gone horribly, horribly wrong it will at least be some small comfort.
Nonsense! No-one even listened to them. If you weren't making an impassioned speech that mentioned Bevan at least three times or spitting the word "Blairism" across the chamber, you might as well have gone home.
There was something very odd about watching twitter yesterday afternoon as the NHS Drop the Bill debate raged. The NHS supporters who had fought so hard to be heard went though an exact carbon copy of our Welfare Reform Bill angst - disbelief, passion, then as the votes were counted, nail biting followed by despair.
"Where are all the MPs? Disgrace so few attending debate"
"But! But! He's LYING!!!"
"I could kiss *(insert name of hero of the moment)"
"How can this guy be a Lib Dem? How can they do this?"
"This is so undemocratic!! How can they ignore us like this?"
"Vote soon - I can hardly watch"
"Hey!! where are all these MPs coming from? Dragged in just to vote without hearing debate? Shouldn't be allowed!"
"I feel sick - results in 5 minutes"
"Well, that's it then, we lost"
"The Lib Dems didn't even vote for their own amendment!!"
In just over three hours another few thousand hearts broke, another few thousand voters realised just how rotten "democracy" has become.
But, when it was welfare, I don't know, somehow I could kid myself it was just us. We were hardly popular were we? Compared to the Alpha male that is the NHS, trying to save benefits was like trying to make Katie Price demure. No-one really paid attention to our crucial votes, the media overwhelmingly didn't care, the public didn't have a clue what we were really fighting for and the opposition were hiding in a Starbucks muttering "Please don't notice we started all this."
But this was the NHS! These reforms are opposed by so many acronyms, it reads like a tin of alphabetti-spaghetti. 87% of the public think the NHS is awesome (about 1% think benefits are and we're all on them!!) And - crucially - this was the Tories doing all this!!
Now, Tories can kick Welfare til it gasps it's last breath and the crowds will cheer! Oh how they'll cheer! "More Iain! More Dave!" They'll scream.
But the NHS? The issue that made the Tories unelectable for well over a decade? The issue so toxic to Conservatives, Dave had to *Ringfence* the budget and make lots of "I really understand, honest I do" speeches?
So, here's what happens next.
Let's assume the bill passes. Even if it was the most kick-ass, studiously written, comprehensively wonderful bill of all time, the NHS still has to find 20 billion or so in "efficiency savings" *cough, CUTS cough*. Waiting times are rising, standards are falling, wards are closing, midwife numbers are dropping, A&E waiting times are soaring and there are fewer nurses. By 2015, the stats will read like a car crash. And remember, this is without the bill.
Now, you can't strike on benefits. You can't say "Right, that's it, I'm just not claiming your Disability Living Allowance any more" Cos, you know, you'd starve. AND Iain Duncan-Smith would be thrilled which kind of defeats the object. DWP ministers were always pretty safe in the knowledge that they could do what they liked with us.
But you just can't steamroller through changes to the NHS without the staff. Not without the surgeons and the nurses and the GPs and the radiographers and the physios. It can't be done. I'm astonished Dave and George didn't get the memo. They must have been on yet another foreign lobbying trip when civil servants held the "Sacred Cow" seminar.
Joking aside, there is only one possible conclusion. They heard Blair talk of the "scars on his back" from public sector reform, they heard him say he should have gone further and faster, and they made a decision that no matter what happened Lansley's health plans would go ahead. Just like they decided that no matter what happened, Dunky's welfare plans would go ahead. And Gove's Education reform..... and Clarke's Justice reforms..... and Gideon's money tree planting spree....
And the LibDems? Well, they will get the blame, just as they always do. As every Gran dies on a trolley in a corridor, as every bed get's blocked, as every hospital get's sold off to MacDonalds, every classroom is sponsored by Murdoch, every ill or disabled person starves quietly in their unheated home - they will get the blame. "They stood by and let this happen" will ring out across shires and cities alike. I have saved my LibDem hyperbole til now, just in case they redeemed themselves, but this step is the step too far. This of all is the step they can never recover from.
When I remember not to be devastated at the human cost, suffering and horror of a country picked apart, all at once, no stone of major-upheaval left unturned, part of me will sit back for the next year or two and enjoy watching Dave and George, Andrew and Iain squirm. As the privileged complacency falls away, the out-of-touch arrogance turns to doubt, I will be chuckling in a dark humoured kind of way.
As the little boys in the playground realise their game has gone horribly, horribly wrong it will at least be some small comfort.
Wednesday, 7 March 2012
The Cold Hand of Sheer Terror
I went to the Outside today! For fun! To do something nice!
I can't remember the last time that happened. Seriously, I've forgotten.
I went for a lovely lunch with the lovely @bunnyrabble and chatted in a lovely "Cameron's a knobber" kind of way.
My mood driving home was bubbly, delight at a little freedom mixed with a teeny bit of pride that I managed to do a nice thing.
Home with the boys, flumping in a cuddle, I snuck a little look at twitter and found this : http://www.dailyveil.co.uk/news/article-2109942/Patients-failed-NHS-visit-A-E-100-times-year-shows-shock-report.html
And my heart nearly stopped. My blood ran cold. I literally sat and stared. You know those moments you totally expect but hope will never come?
I've heard about "Personal Budgets" in the NHS and wondered - what if they run out?
I've worried about GP commissioning - what if I need expensive surgery or treatment just before the new financial year?
I've worried about privatisation of the NHS - who but the NHS would treat someone like me?
And today, Tory MP and member of the Commons Health Select Committee (!!!), Chris Skidmore said that research into so-called ‘super-users’ of the NHS – people with chronic conditions who keep readmitting themselves to hospital – has uncovered "the full scale of the problem."
What problem is this?
Ahhh, yes, I am the problem. If £107 a week is considered WAY more than I'm worth in disgusting, selfish state income, just imagine what people like Mr Skidmore might think about the £24,000 per year the NHS spends on my chemo shots! Or the 10s of thousands each of my operations has cost. Of the endless in-patient stays costing that good old fella - the hardworking taxpayer - £500 per day.
Skidmore goes on to say "the figures showed the NHS is failing to tackle problems such as obesity, diabetes, substance abuse and alcoholism." He said: ‘These figures demonstrate clearly the scale to which NHS care is being dominated by super-users, usually those with long-term chronic conditions and those involved with substance misuse.
Ahhhh, here we go again. Us "Chronics", the dregs of society, de-classified as "disabled" written out of state support, abandoned and reviled now thrown in the NHS drunk-tank with the Friday night scallies.
Is this the start of a new rhetoric? After all, this is exactly how the ground was prepared for ESA, refusing DLA and cutting social care. This is how we ensured the public wouldn't care even a tiny bit when the sick and disabled were thrown on the scrapheap. Just lump 'em in with the feckless, the unfortunate, the irresponsible, the unwashed, the users, the cheats or the drunks.
Obviously, someone decided alcoholism or substance abuse weren't "real conditions" ages ago and focus groups and think tanks know very well the public will get out the pitchforks at the mere mention of such "types". Chuck any other group into that mix and you can almost guarantee a lack of sympathy.
And the line that really made me scared : "'We must begin to look closer at who exactly is using the NHS rather than allowing its revolving door to continue turning.’
Firstly Mr Skidmore, it's "more closely" and secondly, I don't doubt it for a second. I have expected it from your cruel Government for some time
Well Mr Skidmore, should you ensure that "revolving door" stops turning for people like me, I will die. Simple as that. If you take away my income, I might find kind hearted people to ensure that I can eat, but if you shut that "revolving door" I will die.
There's a word for that Skids. It's a word people don't like. An emotive word. A word that sends a chill down spines, that evokes our very worst human failures through history. A word that conjures dead babies and sinister social engineering.
The word is eugenics.
Taking the wrong path once, (ESA) might be forgiveable, taking it twice might be arrogant (DLA) taking it three times (Denying NHS care) is fascist Mr Skidmore.
Be very, very careful Skiddy Mc-Skids. Unless you are prepared to answer the question - "Who deserves to live"
Image courtesy of @B4dAlbert
I can't remember the last time that happened. Seriously, I've forgotten.
I went for a lovely lunch with the lovely @bunnyrabble and chatted in a lovely "Cameron's a knobber" kind of way.
My mood driving home was bubbly, delight at a little freedom mixed with a teeny bit of pride that I managed to do a nice thing.
Home with the boys, flumping in a cuddle, I snuck a little look at twitter and found this : http://www.dailyveil.co.uk/news/article-2109942/Patients-failed-NHS-visit-A-E-100-times-year-shows-shock-report.html
And my heart nearly stopped. My blood ran cold. I literally sat and stared. You know those moments you totally expect but hope will never come?
I've heard about "Personal Budgets" in the NHS and wondered - what if they run out?
I've worried about GP commissioning - what if I need expensive surgery or treatment just before the new financial year?
I've worried about privatisation of the NHS - who but the NHS would treat someone like me?
And today, Tory MP and member of the Commons Health Select Committee (!!!), Chris Skidmore said that research into so-called ‘super-users’ of the NHS – people with chronic conditions who keep readmitting themselves to hospital – has uncovered "the full scale of the problem."
What problem is this?
Ahhh, yes, I am the problem. If £107 a week is considered WAY more than I'm worth in disgusting, selfish state income, just imagine what people like Mr Skidmore might think about the £24,000 per year the NHS spends on my chemo shots! Or the 10s of thousands each of my operations has cost. Of the endless in-patient stays costing that good old fella - the hardworking taxpayer - £500 per day.
Skidmore goes on to say "the figures showed the NHS is failing to tackle problems such as obesity, diabetes, substance abuse and alcoholism." He said: ‘These figures demonstrate clearly the scale to which NHS care is being dominated by super-users, usually those with long-term chronic conditions and those involved with substance misuse.
Ahhhh, here we go again. Us "Chronics", the dregs of society, de-classified as "disabled" written out of state support, abandoned and reviled now thrown in the NHS drunk-tank with the Friday night scallies.
Is this the start of a new rhetoric? After all, this is exactly how the ground was prepared for ESA, refusing DLA and cutting social care. This is how we ensured the public wouldn't care even a tiny bit when the sick and disabled were thrown on the scrapheap. Just lump 'em in with the feckless, the unfortunate, the irresponsible, the unwashed, the users, the cheats or the drunks.
Obviously, someone decided alcoholism or substance abuse weren't "real conditions" ages ago and focus groups and think tanks know very well the public will get out the pitchforks at the mere mention of such "types". Chuck any other group into that mix and you can almost guarantee a lack of sympathy.
And the line that really made me scared : "'We must begin to look closer at who exactly is using the NHS rather than allowing its revolving door to continue turning.’
Firstly Mr Skidmore, it's "more closely" and secondly, I don't doubt it for a second. I have expected it from your cruel Government for some time
Well Mr Skidmore, should you ensure that "revolving door" stops turning for people like me, I will die. Simple as that. If you take away my income, I might find kind hearted people to ensure that I can eat, but if you shut that "revolving door" I will die.
There's a word for that Skids. It's a word people don't like. An emotive word. A word that sends a chill down spines, that evokes our very worst human failures through history. A word that conjures dead babies and sinister social engineering.
The word is eugenics.
Taking the wrong path once, (ESA) might be forgiveable, taking it twice might be arrogant (DLA) taking it three times (Denying NHS care) is fascist Mr Skidmore.
Be very, very careful Skiddy Mc-Skids. Unless you are prepared to answer the question - "Who deserves to live"
Image courtesy of @B4dAlbert
Tuesday, 6 March 2012
Ability Disabled
I've been trying to pin down a hazy idea that's been floating about in my blog-head for a few weeks now.
Disability.
People greater and way better informed than me have struggled with definitions of disability for decades, so I won't pretend to analyse social models or medical models or biopsychosocial pseudo-science.
I'm thinking about our lives. And the way that they've changed since around 2008.
I never ever thought of myself as a "scrounger". Far from it. I had a terrible illness that limited my life in thousands of ways. Crucially, I was never given any cause to.
My Blue Badge was the thing that improved my quality of life the most. It literally made the difference between leaving the house and not. If I can park right outside the door of the supermarket or the school or the hospital, I can go, if not, I simply can't manage.
Yes, I can walk. I can just about get round a small supermarket without feeling so exhausted I have to sit on the floor. Before I had the Blue Badge, I regularly had to sit down in a shop and put in an SOS call to my husband. I became more and more insular, less able to enjoy the things everyone else took for granted.
When I decide to go to a shop or a school concert, I know that the rest of the day will be a write off. How does the act of over-riding my disability affect everything else that I do? My energy and ability are limited (see The Spoon Theory for a wonderful explanation http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ ) and for me, managing my disability means achieving as much as I can, every day, with the limited ability that I have.
I could have given up. Many do. I could have gone to bed and said enough was enough. Given up the daily struggle for a degree of normality.
I could give up on food (it disables me more than anything else) and accept a permanent feeding tube. But I like food. I refuse to give up on something so fundamental, so entwined with social interaction and pleasure, just because it hurts and makes me vomit and keeps me on the loo all day.
I could have chosen not to have children. Some might legitimately argue that I should have done. But imagine the joy I'd have missed? The love that fills the places where pain lurks. The shiny little faces that make me be more, do more every single day. Sometimes (well, often) it's all way too much, but they keep me going, always more important than my various symptoms or dark, dark, days.
I could use a wheelchair, I very often need to. But then I become more disabled. My muscles waste a little more, my heart would get a little weaker, my blood, already sticky with inaction would clot a little easier, potentially bringing on stroke No2.
I could stop bathing or washing my hair or getting myself dressed. Sometimes those simple things take me all day. Sometimes I can't do them at all. But then who am I? What is left?
Disability Living Allowance (DLA) was the extra money to acknowledge all of those things. It meant I could buy food that didn't make me as ill. It meant that I could pay for some help in the bad times. It meant that I could get my children to school in a taxi on days I can't leave the toilet. It meant that I got a Blue Badge.
As we all trawl through the criteria for the new benefit to replace DLA (PIP or Personal Independence Payments) it becomes clearer and clearer that is designed to disable.
If I can make a simple meal using a microwave, if I can get dressed and wash myself, if I can walk more than 50 metres, whatever it costs me, I am no longer disabled. It no longer matters what those things cost me, their effect is irrelevant. If I can clean up my own incontinence, incontinence is no longer disabling. If I can chew, I am not disabled, never mind the carnage that the transit of that food causes.
So, if you are disabled - and make no mistake, I mean disabled in any way at all - deaf, blind, paralysed, mentally ill, or if you have a "fluctuating condition" like mine - if you can leave the house, care for yourself in the most basic ways and stumble through a semblance of "life" you will not qualify for PIP. If you give up, stop trying, stop fighting for every minute of every day, you might.
The same is now true of social care. As councils up and down the country attempt to save an eye watering 25% from budgets, "moderate needs" no longer exist. You must simply struggle through "moderate" until the daily effort pushes you towards "critical" Then the skeleton remains of state assistance will pick up the damaged pieces. And those pieces will be more damaged, will cost the NHS more money.
The message on disability is clear and is ringing out loud and true across every town in the country - "Give up, don't fight, don't try to be the best you can be, don't cling to pleasure - it is not for the likes of you.
Don't you dare EVER have good day, take a holiday, and God forbid, throw caution to the wind and risk days of pain for a moment's joy on a water slide. Don't stay active, don't keep your disability at bay for as long as you can. Don't try to avoid costly medical interventions. Don't let your neighbours see you in the garden or hoovering the lounge. Don't cook a beautiful meal, eat microwave meals and be grateful. Don't be so selfish! How DARE you think you deserve a partner or children and if you do, expect that they will become more exhausted, more neglected as they are expected to become "critical" themselves just caring for you.
It is a terrible, sinister shift. Possibly not designed to be so - who knows? I could no longer say for sure if this is utter ignorance and a lack of understanding of disability, or a sinister attempt to ensure that disability becomes more marginalised, less visible and in the end.... well in the end what? What will become of us?
The Government think we will all buckle down and get jobs. I still cannot imagine in any way at all what makes them think we didn't try that already - in some cases, mine included, until it brought us to the very brink of trading our lives for a pay cheque.
We are talking about millions of lives, not just a handful. Half a million people losing DLA - half a million!! Many more losing ESA. Yet more left to sit in their own filth, eating when a neighbour knocks to check, for want of a little social care.
Once again, I ask whether we need to wait for this terrible, inhumane bomb to explode across our news bulletins or whether we think again. Now. Before it is too late.
Disability.
People greater and way better informed than me have struggled with definitions of disability for decades, so I won't pretend to analyse social models or medical models or biopsychosocial pseudo-science.
I'm thinking about our lives. And the way that they've changed since around 2008.
I never ever thought of myself as a "scrounger". Far from it. I had a terrible illness that limited my life in thousands of ways. Crucially, I was never given any cause to.
My Blue Badge was the thing that improved my quality of life the most. It literally made the difference between leaving the house and not. If I can park right outside the door of the supermarket or the school or the hospital, I can go, if not, I simply can't manage.
Yes, I can walk. I can just about get round a small supermarket without feeling so exhausted I have to sit on the floor. Before I had the Blue Badge, I regularly had to sit down in a shop and put in an SOS call to my husband. I became more and more insular, less able to enjoy the things everyone else took for granted.
When I decide to go to a shop or a school concert, I know that the rest of the day will be a write off. How does the act of over-riding my disability affect everything else that I do? My energy and ability are limited (see The Spoon Theory for a wonderful explanation http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ ) and for me, managing my disability means achieving as much as I can, every day, with the limited ability that I have.
I could have given up. Many do. I could have gone to bed and said enough was enough. Given up the daily struggle for a degree of normality.
I could give up on food (it disables me more than anything else) and accept a permanent feeding tube. But I like food. I refuse to give up on something so fundamental, so entwined with social interaction and pleasure, just because it hurts and makes me vomit and keeps me on the loo all day.
I could have chosen not to have children. Some might legitimately argue that I should have done. But imagine the joy I'd have missed? The love that fills the places where pain lurks. The shiny little faces that make me be more, do more every single day. Sometimes (well, often) it's all way too much, but they keep me going, always more important than my various symptoms or dark, dark, days.
I could use a wheelchair, I very often need to. But then I become more disabled. My muscles waste a little more, my heart would get a little weaker, my blood, already sticky with inaction would clot a little easier, potentially bringing on stroke No2.
I could stop bathing or washing my hair or getting myself dressed. Sometimes those simple things take me all day. Sometimes I can't do them at all. But then who am I? What is left?
Disability Living Allowance (DLA) was the extra money to acknowledge all of those things. It meant I could buy food that didn't make me as ill. It meant that I could pay for some help in the bad times. It meant that I could get my children to school in a taxi on days I can't leave the toilet. It meant that I got a Blue Badge.
As we all trawl through the criteria for the new benefit to replace DLA (PIP or Personal Independence Payments) it becomes clearer and clearer that is designed to disable.
If I can make a simple meal using a microwave, if I can get dressed and wash myself, if I can walk more than 50 metres, whatever it costs me, I am no longer disabled. It no longer matters what those things cost me, their effect is irrelevant. If I can clean up my own incontinence, incontinence is no longer disabling. If I can chew, I am not disabled, never mind the carnage that the transit of that food causes.
So, if you are disabled - and make no mistake, I mean disabled in any way at all - deaf, blind, paralysed, mentally ill, or if you have a "fluctuating condition" like mine - if you can leave the house, care for yourself in the most basic ways and stumble through a semblance of "life" you will not qualify for PIP. If you give up, stop trying, stop fighting for every minute of every day, you might.
The same is now true of social care. As councils up and down the country attempt to save an eye watering 25% from budgets, "moderate needs" no longer exist. You must simply struggle through "moderate" until the daily effort pushes you towards "critical" Then the skeleton remains of state assistance will pick up the damaged pieces. And those pieces will be more damaged, will cost the NHS more money.
The message on disability is clear and is ringing out loud and true across every town in the country - "Give up, don't fight, don't try to be the best you can be, don't cling to pleasure - it is not for the likes of you.
Don't you dare EVER have good day, take a holiday, and God forbid, throw caution to the wind and risk days of pain for a moment's joy on a water slide. Don't stay active, don't keep your disability at bay for as long as you can. Don't try to avoid costly medical interventions. Don't let your neighbours see you in the garden or hoovering the lounge. Don't cook a beautiful meal, eat microwave meals and be grateful. Don't be so selfish! How DARE you think you deserve a partner or children and if you do, expect that they will become more exhausted, more neglected as they are expected to become "critical" themselves just caring for you.
It is a terrible, sinister shift. Possibly not designed to be so - who knows? I could no longer say for sure if this is utter ignorance and a lack of understanding of disability, or a sinister attempt to ensure that disability becomes more marginalised, less visible and in the end.... well in the end what? What will become of us?
The Government think we will all buckle down and get jobs. I still cannot imagine in any way at all what makes them think we didn't try that already - in some cases, mine included, until it brought us to the very brink of trading our lives for a pay cheque.
We are talking about millions of lives, not just a handful. Half a million people losing DLA - half a million!! Many more losing ESA. Yet more left to sit in their own filth, eating when a neighbour knocks to check, for want of a little social care.
Once again, I ask whether we need to wait for this terrible, inhumane bomb to explode across our news bulletins or whether we think again. Now. Before it is too late.
Monday, 5 March 2012
A Busman's Holiday
I did mean to say I was taking a break, but I was a bit too tired to type it properly and, you know, think much.
All the time I was working on the Responsible Reform report, my kids, my husband and I were counting down the days til "Mummy Holiday". I promised faithfully that I would take February off, lock my laptop slavedriver in a cupboard or something and go all Nigella on our neglected home life.
I know this sounds utterly naive, but I honestly thought that I'd be able to turn off the tech on the 10th January, snuggle up under a duvet for a week or so and then fix my broken life. We'd been ignored for so long - in the media, by politicians, by the public - I never once considered that anyone might actually start to pay attention. I never in a million years thought I'd be fielding calls from Newsnight and the BBC. If you'd told me a UK welfare report would trend globally on twitter, I'd have laughed.
Well, that's what happens when complete novices learn as they go along.
So, I'm on holiday! As Kaliya said, it feels like the first week of school holidays! AND I get the added bonus of watching Workfare crumble spectacularly, A4E fall apart at the seams and Chris Grayling stuttering like an indignant toddler caught with his hand in the sweetie jar.
Just for the record, I give ESA about another 4 months before that too collapses, groaning, under the unprecedented incompetence of it's own design. Can't wait, can you?
But last night, tweeting a bit with friends, and reading a few "Save our NHS" articles, I got to thinking about what had made the Spartacus campaign so powerful? What on earth made welfare sexy? And I remembered that it was the personal stories. The One Month Before Heartbreak Twitter campaign and Left out in the Cold. The #fitforwork tag and the #DLAstories.
We, as people, or "the public" are constantly de-humanised by our political system. Claimants in need are referred to as "Stock", numbers claiming as "flow rates", patients as "clients". We forget all too often WHY we are fighting and who we are fighting for.
So I asked people : Has the NHS ever saved your life? Really think about it? Even if you were immunised, there's a good chance that it did. Nasty broken bones used to kill people, and flu and tonsilitis and even a dog bite. Most of us were born in a hospital if nothing else. Even that nasty chest infection you got last year could have seen you off if it had been left to develop into pneumonia for want of the money to pay for antibiotics.
How many children did your Great-Nan have? How many survived? We can go back you know. We can always undo the great good work we've done over the years to make the UK the most equitable health nation on earth - yes read it again, the UK is the world leader in treating conditions on need, not on the ability to pay. We are the best at something.
Oh, of all people, I know the faults of the NHS. But I'm still here to write about it.
Within minutes, @concrete_sky had suggested a hashtag - #nhssavedmylife - and this morning it was trending No1 in the UK. The stories are heart warming, harrowing and sometimes challenging, but they remind us that come what may, we have something precious that is worth fighting for.
Join the fight, tell your story. If you can say the #nhssavedmylife add your voice.
Let's remind Andrew Lansley why reform must always be responsible. And let's remind him exactly who the NHS is there to serve - the patients.
All the time I was working on the Responsible Reform report, my kids, my husband and I were counting down the days til "Mummy Holiday". I promised faithfully that I would take February off, lock my laptop slavedriver in a cupboard or something and go all Nigella on our neglected home life.
I know this sounds utterly naive, but I honestly thought that I'd be able to turn off the tech on the 10th January, snuggle up under a duvet for a week or so and then fix my broken life. We'd been ignored for so long - in the media, by politicians, by the public - I never once considered that anyone might actually start to pay attention. I never in a million years thought I'd be fielding calls from Newsnight and the BBC. If you'd told me a UK welfare report would trend globally on twitter, I'd have laughed.
Well, that's what happens when complete novices learn as they go along.
So, I'm on holiday! As Kaliya said, it feels like the first week of school holidays! AND I get the added bonus of watching Workfare crumble spectacularly, A4E fall apart at the seams and Chris Grayling stuttering like an indignant toddler caught with his hand in the sweetie jar.
Just for the record, I give ESA about another 4 months before that too collapses, groaning, under the unprecedented incompetence of it's own design. Can't wait, can you?
But last night, tweeting a bit with friends, and reading a few "Save our NHS" articles, I got to thinking about what had made the Spartacus campaign so powerful? What on earth made welfare sexy? And I remembered that it was the personal stories. The One Month Before Heartbreak Twitter campaign and Left out in the Cold. The #fitforwork tag and the #DLAstories.
We, as people, or "the public" are constantly de-humanised by our political system. Claimants in need are referred to as "Stock", numbers claiming as "flow rates", patients as "clients". We forget all too often WHY we are fighting and who we are fighting for.
So I asked people : Has the NHS ever saved your life? Really think about it? Even if you were immunised, there's a good chance that it did. Nasty broken bones used to kill people, and flu and tonsilitis and even a dog bite. Most of us were born in a hospital if nothing else. Even that nasty chest infection you got last year could have seen you off if it had been left to develop into pneumonia for want of the money to pay for antibiotics.
How many children did your Great-Nan have? How many survived? We can go back you know. We can always undo the great good work we've done over the years to make the UK the most equitable health nation on earth - yes read it again, the UK is the world leader in treating conditions on need, not on the ability to pay. We are the best at something.
Oh, of all people, I know the faults of the NHS. But I'm still here to write about it.
Within minutes, @concrete_sky had suggested a hashtag - #nhssavedmylife - and this morning it was trending No1 in the UK. The stories are heart warming, harrowing and sometimes challenging, but they remind us that come what may, we have something precious that is worth fighting for.
Join the fight, tell your story. If you can say the #nhssavedmylife add your voice.
Let's remind Andrew Lansley why reform must always be responsible. And let's remind him exactly who the NHS is there to serve - the patients.
Thursday, 1 March 2012
A Post About Pooh
I know, the Welfare Reform Bill passed.
In a fizzle of shame, it gasped it's way through the Lords last night.
But we always knew it would, so I'm going to talk about pooh.
If you have Crohn's disease, you live in fear of one thing - the Gastro Bug.
My bowel is knackered already. I mean completely and utterly borked. It's had bits lopped off, bit's sliced and stitched, bit's stuck together, bits that just gave up and exploded fairly dramatically, bit's that turned into huge weeping abscesses and bits that sprung holes like a leaky bucket.
Thanks to the NHS, it's been repeatedly fixed, glued, joined, patched and soothed but I haven't got as much left as you lot and I have permanent gastro-enteritis.
Have you had food poisoning? I mean really? Have you spent all night on the toilet groaning, seriously thinking you're going to die? Did you pass out as the clammy sweat of nausea crept through every atom of your body? Did the pain feel like a red hot poker, stabbing through your guts and out through your spine? As the colour drained from your cheeks and you dripped with a shivering, cold, sweat? Did you pull all of your stomach muscles retching endless burning acid into the toilet bowl? Did you break a rib, the spasms of peristalsis racked your body so hard?
You couldn't believe it was possible to feel that ill and keep breathing could you? Come on really think about it! That dodgy curry after the rugby, the shellfish in Marbella, the gastric-flu that kept you in bed for a fortnight?
Well that happened to me when I was about ten and never stopped. Never. Not for a week. At first, I thought it could only be a matter of time - no body could repeatedly go through that endlessly, a horrific, grinding Groundhog Day and survive.
But you know, somehow, it can. I've never worked out how, but even when you want to go to bed and never wake up, when the pain is so bad you can't think, when you can't remember the last time you slept for more than an hour of two, you go on. I went through university and worked for 10 years through that. Every day.
28 years later, I'm slowing down a bit. My body is complaining, I have deficiencies of this and crumbling bits of that. My bones haven't developed properly and already have osteoporosis. My teeth have crumbled away from the steady coating of vomit acid. I can't walk very far or stand up for long or pick up my children - I'm really, really tired.
But some days, if I'm really lucky, once in a blue moon, I might be that fraudster on the water slide, pretending she's disabled. The "cheat" who dared to risk all of the above but still go to London for a day trip or cheer at the sidelines of my little boy's school football tournament. I'll be the one who defiantly hangs on to pleasure when it comes my way - it comes so rarely.
2 days ago, I caught a Gastric Bug. I've been lucky - it's been years, but the particularly snippy diarrhoea and vomiting bug that's putting healthy people in bed for two days has found me.
My bowel is their favourite playing ground of all. They will set up camps in my leaky bits, have parties in the pockets and loops that shouldn't be there. Last night, I broke my personal-best poohing record. My bowels exploded in agony 28 times!! 28!! I have no idea why I started counting, there was a point to it last night, but I've forgotten now. I may as well have cholera now, and I'm off to bed for a bit.
So why the graphic, uncomfortable, faecal, vulnerable post this morning?
Because the Welfare Reform Bill, 2010 passed last night and people like me just lost everything. Regular readers will know, I have been told I don't qualify for DLA and I almost certainly will lose Incapacity Benefit as nothing in the ESA descriptors would mean that I qualify for ESA. Even if I did I will lose it after a year as my husband earns more than £7,500 a year. I'll never qualify for the Long term Support Group because I will never be "completely incapable of any kind of work at all". Also, with a bit of luck, they'll never actually tell me I've only got six months to live, I'll just burst somewhere at some point. So that means I'll never qualify because I'll never be "terminally ill" (Though of course, I will be, potentially, every day.)
People with "moderate needs" like mine - I'll leave you to judge how moderate my disability sounds from the description I just gave above - will no longer qualify for any kind of Social Care. Nor will my children unless I get to the stage where I physically can't get them to school.
I won't qualify for the new PIP - my incontinence is not severe enough to qualify. I was incontinent 7 times last night, cleaned myself up, changed my own clothes. But I did it myself, which means my disability doesn't affect me, according to the new rules.
My husband won't get carer's allowance, we won't qualify for any of the things the Government say are exempting the disabled from the worst of this bill because look! They've de-classified me!! Evil genius isn't it? We won't be able to earn a little more before we lose support because guess what? I'm not disabled now, so I won't qualify for the "help disabled people are getting".
So if you haven't read my blog before, I hope all the talk of pooh didn't make you feel too uncomfortable. But I hope more than anything, that what we just did to compassion, dignity and the lives of sick and disabled people up and down the country makes you feel very uncomfortable indeed.
29th Feb, 2012. The Welfare Reform Bill, 2010, became an Act.
And everything changed.
In a fizzle of shame, it gasped it's way through the Lords last night.
But we always knew it would, so I'm going to talk about pooh.
If you have Crohn's disease, you live in fear of one thing - the Gastro Bug.
My bowel is knackered already. I mean completely and utterly borked. It's had bits lopped off, bit's sliced and stitched, bit's stuck together, bits that just gave up and exploded fairly dramatically, bit's that turned into huge weeping abscesses and bits that sprung holes like a leaky bucket.
Thanks to the NHS, it's been repeatedly fixed, glued, joined, patched and soothed but I haven't got as much left as you lot and I have permanent gastro-enteritis.
Have you had food poisoning? I mean really? Have you spent all night on the toilet groaning, seriously thinking you're going to die? Did you pass out as the clammy sweat of nausea crept through every atom of your body? Did the pain feel like a red hot poker, stabbing through your guts and out through your spine? As the colour drained from your cheeks and you dripped with a shivering, cold, sweat? Did you pull all of your stomach muscles retching endless burning acid into the toilet bowl? Did you break a rib, the spasms of peristalsis racked your body so hard?
You couldn't believe it was possible to feel that ill and keep breathing could you? Come on really think about it! That dodgy curry after the rugby, the shellfish in Marbella, the gastric-flu that kept you in bed for a fortnight?
Well that happened to me when I was about ten and never stopped. Never. Not for a week. At first, I thought it could only be a matter of time - no body could repeatedly go through that endlessly, a horrific, grinding Groundhog Day and survive.
But you know, somehow, it can. I've never worked out how, but even when you want to go to bed and never wake up, when the pain is so bad you can't think, when you can't remember the last time you slept for more than an hour of two, you go on. I went through university and worked for 10 years through that. Every day.
28 years later, I'm slowing down a bit. My body is complaining, I have deficiencies of this and crumbling bits of that. My bones haven't developed properly and already have osteoporosis. My teeth have crumbled away from the steady coating of vomit acid. I can't walk very far or stand up for long or pick up my children - I'm really, really tired.
But some days, if I'm really lucky, once in a blue moon, I might be that fraudster on the water slide, pretending she's disabled. The "cheat" who dared to risk all of the above but still go to London for a day trip or cheer at the sidelines of my little boy's school football tournament. I'll be the one who defiantly hangs on to pleasure when it comes my way - it comes so rarely.
2 days ago, I caught a Gastric Bug. I've been lucky - it's been years, but the particularly snippy diarrhoea and vomiting bug that's putting healthy people in bed for two days has found me.
My bowel is their favourite playing ground of all. They will set up camps in my leaky bits, have parties in the pockets and loops that shouldn't be there. Last night, I broke my personal-best poohing record. My bowels exploded in agony 28 times!! 28!! I have no idea why I started counting, there was a point to it last night, but I've forgotten now. I may as well have cholera now, and I'm off to bed for a bit.
So why the graphic, uncomfortable, faecal, vulnerable post this morning?
Because the Welfare Reform Bill, 2010 passed last night and people like me just lost everything. Regular readers will know, I have been told I don't qualify for DLA and I almost certainly will lose Incapacity Benefit as nothing in the ESA descriptors would mean that I qualify for ESA. Even if I did I will lose it after a year as my husband earns more than £7,500 a year. I'll never qualify for the Long term Support Group because I will never be "completely incapable of any kind of work at all". Also, with a bit of luck, they'll never actually tell me I've only got six months to live, I'll just burst somewhere at some point. So that means I'll never qualify because I'll never be "terminally ill" (Though of course, I will be, potentially, every day.)
People with "moderate needs" like mine - I'll leave you to judge how moderate my disability sounds from the description I just gave above - will no longer qualify for any kind of Social Care. Nor will my children unless I get to the stage where I physically can't get them to school.
I won't qualify for the new PIP - my incontinence is not severe enough to qualify. I was incontinent 7 times last night, cleaned myself up, changed my own clothes. But I did it myself, which means my disability doesn't affect me, according to the new rules.
My husband won't get carer's allowance, we won't qualify for any of the things the Government say are exempting the disabled from the worst of this bill because look! They've de-classified me!! Evil genius isn't it? We won't be able to earn a little more before we lose support because guess what? I'm not disabled now, so I won't qualify for the "help disabled people are getting".
So if you haven't read my blog before, I hope all the talk of pooh didn't make you feel too uncomfortable. But I hope more than anything, that what we just did to compassion, dignity and the lives of sick and disabled people up and down the country makes you feel very uncomfortable indeed.
29th Feb, 2012. The Welfare Reform Bill, 2010, became an Act.
And everything changed.
Subscribe to:
Posts (Atom)