Monday, 30 January 2012
Coalition Confusion over Disability now in Sign Form
Many thanks to @queerpup for sending me this picture. Gives a whole new meaning to "Turn hard to the right" Doesn't it?
Email Your MP To Support Lords' Amendments to #WRB
As many of you will know, the Welfare Reform Bill returns to the House of Commons on Weds, Feb 1st. Ministers have assured us that they will overturn all of the modest amendments we've fought so very hard to achieve. They will do this by using the archaic and undemocratic processes of financial privilege and the Parliament Act. All we can do at this stage is appeal to the consciences of our constituency MP's. Ask them to look very carefully at the amendments and if you wish to personalise the template letter explain to your MP how you as their constituent will be affected by the WRB.
We have until wednesday to persuade those MP's who have heard our arguments for many, many months that we're not asking for the world, we're not seeking to wreck their bill, we just need the bill to be safe. We understand how exhausted everyone is, but this is vital if we are to stop all our hard work from being undone at the brush of an arrogant pen. Please take action now!
PS: Sorry for the formatting. It turns out that two spoonies, with one functioning laptop and no functioning body parts or brains find it a tad tricky to format properly!
We have until wednesday to persuade those MP's who have heard our arguments for many, many months that we're not asking for the world, we're not seeking to wreck their bill, we just need the bill to be safe. We understand how exhausted everyone is, but this is vital if we are to stop all our hard work from being undone at the brush of an arrogant pen. Please take action now!
PS: Sorry for the formatting. It turns out that two spoonies, with one functioning laptop and no functioning body parts or brains find it a tad tricky to format properly!
Friday, 27 January 2012
What can we do Now?
So, as you may have heard, the welfare reform bill will go back to the Commons on Wednesday 1st Feb. That's just one day after the third and final reading of the bill in the Lords.
We are all beyond exhausted. Many of us have made ourselves terribly unwell as we fought the worst aspects of the bill. It seems a cruelty to have to prepare for the commons so quickly, but in a fight that has been unpleasant and cruel all the way through, we should expect no less.
It means that spartaci across the internet must summon up a few more ounces of effort for a little while longer.
Since the Responsible Reform report was launched, we now have a Facebook page and a website. People with their own ideas and plans can join the groups and help with many projects - from going through the new PIP thresholds to writing emails. Do take a look if you have some energy to help.
Today, I'm working on a template email that the wonderful people at Church Poverty Action are designing for us. You will simply have to put in your postcode and a letter tailored to your own particular MP will appear. If you can personalise it with your own experiences of ESA or PIP, all the better, but I should have the template for you to use very soon.
In the meantime, it would be very helpful indeed if you wrote to your local paper. They usually have an email address you can use to send letters to the editor. If you feel able to call up and see if they would like a short article, all the better, but many people don't yet know what the welfare reform bill will mean to them, so something very simple pointing out the changes and urging people to contact their MP would be a good start.
Local press have more impact than we might think. MPs worry when they see their local papers full of objections to a particular policy. Their first responsibility is to their constituents and if majorities are tight, pressure can have more effect than in a national paper.
We have a network now that covers most of the country, so let's see how many letters we can get published before next week.
You may have noticed that Scope have joined forces with 38 Degrees to produce an email campaign asking MPs not to use parliamentary privilege to override the amendments to the bill. If you are on their mailing list, please do take a moment to join the action.
Finally, today, a letter to the Guardian from 50 LibDem candidates urges their MPs to let the amendments stand too. We are no longer alone and even the mainstream press are putting pressure on parliamentarians that simply wasn't there a few weeks ago.
We might be exhausted, we might feel that we cannot go on, but this was always going to be a battle we would have to fight to the wire. The very fact we are fighting for amendments at all is a miracle. Good luck Spartaci!! Not long now and every last shred of effort you can find might make the difference.
We are all beyond exhausted. Many of us have made ourselves terribly unwell as we fought the worst aspects of the bill. It seems a cruelty to have to prepare for the commons so quickly, but in a fight that has been unpleasant and cruel all the way through, we should expect no less.
It means that spartaci across the internet must summon up a few more ounces of effort for a little while longer.
Since the Responsible Reform report was launched, we now have a Facebook page and a website. People with their own ideas and plans can join the groups and help with many projects - from going through the new PIP thresholds to writing emails. Do take a look if you have some energy to help.
Today, I'm working on a template email that the wonderful people at Church Poverty Action are designing for us. You will simply have to put in your postcode and a letter tailored to your own particular MP will appear. If you can personalise it with your own experiences of ESA or PIP, all the better, but I should have the template for you to use very soon.
In the meantime, it would be very helpful indeed if you wrote to your local paper. They usually have an email address you can use to send letters to the editor. If you feel able to call up and see if they would like a short article, all the better, but many people don't yet know what the welfare reform bill will mean to them, so something very simple pointing out the changes and urging people to contact their MP would be a good start.
Local press have more impact than we might think. MPs worry when they see their local papers full of objections to a particular policy. Their first responsibility is to their constituents and if majorities are tight, pressure can have more effect than in a national paper.
We have a network now that covers most of the country, so let's see how many letters we can get published before next week.
You may have noticed that Scope have joined forces with 38 Degrees to produce an email campaign asking MPs not to use parliamentary privilege to override the amendments to the bill. If you are on their mailing list, please do take a moment to join the action.
Finally, today, a letter to the Guardian from 50 LibDem candidates urges their MPs to let the amendments stand too. We are no longer alone and even the mainstream press are putting pressure on parliamentarians that simply wasn't there a few weeks ago.
We might be exhausted, we might feel that we cannot go on, but this was always going to be a battle we would have to fight to the wire. The very fact we are fighting for amendments at all is a miracle. Good luck Spartaci!! Not long now and every last shred of effort you can find might make the difference.
Thursday, 26 January 2012
Hallucinating "Though The Round Window"
How surreal have things become when Nigel Lawson, Geoffrey Howe and Leon Brittain, stalwart Conservative figures from the 80's, are voting against the more brutal elements of a so called 'compassionate conservative' government in 2012?
The distasteful truth is that neither proposals for PIP would have passed, nor would the social fund have been abolished without the Liberal Democrats who voted overwhelmingly with the government.*
When you have a bastion of all our childhoods not even bothering to turn up to vote on whether to keep National Insurance entitlement for profoundly disabled children and staunch conservative figures opposing other issues in their own government's Welfare Reform Bill we must ask ourselves what kind of opiate induced haze has led us to believe this is happening?
When you have a bastion of all our childhoods not even bothering to turn up to vote on whether to keep National Insurance entitlement for profoundly disabled children and staunch conservative figures opposing other issues in their own government's Welfare Reform Bill we must ask ourselves what kind of opiate induced haze has led us to believe this is happening?
Are we hallucinating, is it a result of our exhausted, fevered brains or did Floella Benjamin from Playschool really vote more cruelly than Leon Brittain? I think we need more sleep because currently the idea that the 70's equivalent of Mr Tumbles didn't even bother to turn up to vote to keep benefit entitlement for disabled children is not one our brains can cope with.
From the sickbeds of Kaliya and Sue
*Amendment 50e (calling for pause to trial PIP properly) Lib Dem's for 2, against 65
Social fund Amendment 62bja (ring fencing social fund) Lib Dem 1 for, 67 against
From the sickbeds of Kaliya and Sue
*Amendment 50e (calling for pause to trial PIP properly) Lib Dem's for 2, against 65
Social fund Amendment 62bja (ring fencing social fund) Lib Dem 1 for, 67 against
Wednesday, 25 January 2012
Sacrifice More!! Hang the "Cheats" out to Dry!!
There is a huge problem in trying to provide an evidence based approach to welfare reform.
Most people just don't want to believe the evidence.
"But if you'd just admit how many people are "trying it on" You'd get further" "If you'd just admit that fraud is much higher than official figures suggest, the genuine could be better provided for" "Why is it so hard to admit there are millions of cheats?"
So here's the problem. No matter how hard they try, no matter how cruel the policies they design, no matter how many rocks they search under or plugholes they peer into, no Government has ever been able to find this mythical army of feckless, workshy sick and disabled people. Well, not until they designed ESA obviously, where they just defined everyone as fit for work and had done with all that silly evidence nonsense.
Official DWP fraud rates stay stubbornly at half of one percent. 0.5%. From Peter Lilley in the 90s to James Purnell on the 00s to Chris Grayling today.
Nonetheless, successive Governments have been determined that they can find a further 4000% of people who are really absolutely fine. 20% is the figure of choice. From the Benefit Integrity Project in the 90s to PIP now, ideologically, politicians, blessed with rude good health and an arrogance born from ignorance have just not been able to bring themselves to believe the numbers suffering from illness or disability in the UK.
I hear it all the time on comments threads "3.2 Million??? Disabled??? Get outta here!! No WAY are there 3.2 million sick or disabled people. (Actually there are 10 million but this causes such pained outrage I try to break them into this figure gently. 3.2 million is just the number claiming DLA)
They forget that we are still largely hidden away, stuck at home or not integrated into their workplaces. They forget, that even when we are, we may not wish to tell people about our disabilities.
Surely, after 20 years you might think governments would have admitted their folly, educated themselves, maybe read a bit of evidence or looked at a few diagnostic figures?
Nope.
For those who find 3.2 million an impossible figure, in fact it is much much higher, but DLA is massively UNDERclaimed. The endless forms and questions and appeals just put most people off. If the benefit was offered genuinely to all those who need it, the amount we pay out to genuine claimants would rocket.
So for those who tell me I'd do better to admit a much higher degree of fraud than official figures suggest, I say to them that the burden of proof is surely on the accuser? Off you go, get out there and find these hoards of cheating fraudsters - because 94% of calls to the benefit fraud hotline turn out to be malicious and almost none are found to be fraudulent.
Or.....(whisper it).... did it ever occur to these Disability Deniers that..... they might just be wrong?
Most people just don't want to believe the evidence.
"But if you'd just admit how many people are "trying it on" You'd get further" "If you'd just admit that fraud is much higher than official figures suggest, the genuine could be better provided for" "Why is it so hard to admit there are millions of cheats?"
So here's the problem. No matter how hard they try, no matter how cruel the policies they design, no matter how many rocks they search under or plugholes they peer into, no Government has ever been able to find this mythical army of feckless, workshy sick and disabled people. Well, not until they designed ESA obviously, where they just defined everyone as fit for work and had done with all that silly evidence nonsense.
Official DWP fraud rates stay stubbornly at half of one percent. 0.5%. From Peter Lilley in the 90s to James Purnell on the 00s to Chris Grayling today.
Nonetheless, successive Governments have been determined that they can find a further 4000% of people who are really absolutely fine. 20% is the figure of choice. From the Benefit Integrity Project in the 90s to PIP now, ideologically, politicians, blessed with rude good health and an arrogance born from ignorance have just not been able to bring themselves to believe the numbers suffering from illness or disability in the UK.
I hear it all the time on comments threads "3.2 Million??? Disabled??? Get outta here!! No WAY are there 3.2 million sick or disabled people. (Actually there are 10 million but this causes such pained outrage I try to break them into this figure gently. 3.2 million is just the number claiming DLA)
They forget that we are still largely hidden away, stuck at home or not integrated into their workplaces. They forget, that even when we are, we may not wish to tell people about our disabilities.
Surely, after 20 years you might think governments would have admitted their folly, educated themselves, maybe read a bit of evidence or looked at a few diagnostic figures?
Nope.
For those who find 3.2 million an impossible figure, in fact it is much much higher, but DLA is massively UNDERclaimed. The endless forms and questions and appeals just put most people off. If the benefit was offered genuinely to all those who need it, the amount we pay out to genuine claimants would rocket.
So for those who tell me I'd do better to admit a much higher degree of fraud than official figures suggest, I say to them that the burden of proof is surely on the accuser? Off you go, get out there and find these hoards of cheating fraudsters - because 94% of calls to the benefit fraud hotline turn out to be malicious and almost none are found to be fraudulent.
Or.....(whisper it).... did it ever occur to these Disability Deniers that..... they might just be wrong?
Sunday, 22 January 2012
To the Lords
(Written from hospital)
I think it's important to say "thank you" to all those peers who read and responded to our letters and emails. For months now, we've been sending them evidence, urging them to vote or abstain, trying to recruit them to support our causes and flooding them with last minute, urgent appeals.
I believe we should thank all peers, whether they voted the way we wanted them to or not. They all received thousands of letters and emails and at times, it may have been frustrating. I hope that most realised that it was our desperation to be heard that made us so prolific.
If template letters became irritating, I hope they will remember that many people we fight for simply cannot write their own. Those who are profoundly disabled or those with learning difficulties were still aware of what was being done in their name, but often had no way of expressing it. In our cause, template letters were not a lazy response, but often a vital expression of democracy unseen before.
If some appeals were too emotional or dark, then I hope they will remember that disabilities come in a million packages. Those who are mentally ill or desperate with pain and fear need to use their voices too.
So "Thank You" from me. We had no rule book, no guidance, we were just ordinary people trying to be heard. Thank you for listening, thank you for judging with an open mind, and thank you for giving us just a little hope that there is some way left to change things for the better.
Sue Marsh
I think it's important to say "thank you" to all those peers who read and responded to our letters and emails. For months now, we've been sending them evidence, urging them to vote or abstain, trying to recruit them to support our causes and flooding them with last minute, urgent appeals.
I believe we should thank all peers, whether they voted the way we wanted them to or not. They all received thousands of letters and emails and at times, it may have been frustrating. I hope that most realised that it was our desperation to be heard that made us so prolific.
If template letters became irritating, I hope they will remember that many people we fight for simply cannot write their own. Those who are profoundly disabled or those with learning difficulties were still aware of what was being done in their name, but often had no way of expressing it. In our cause, template letters were not a lazy response, but often a vital expression of democracy unseen before.
If some appeals were too emotional or dark, then I hope they will remember that disabilities come in a million packages. Those who are mentally ill or desperate with pain and fear need to use their voices too.
So "Thank You" from me. We had no rule book, no guidance, we were just ordinary people trying to be heard. Thank you for listening, thank you for judging with an open mind, and thank you for giving us just a little hope that there is some way left to change things for the better.
Sue Marsh
Friday, 20 January 2012
So How Am I?
Well I can confirm categorically that Arbeit does not macht you frei.
Quite the opposite in fact. Far from "freeing" me, work has put me in a hospital bed chained with plastic tubes.
I'm almost certain none of the politicians so glibly deciding our futures know what the "spoon bank" is. If you have a long term condition, then you only have so much energy for any given day. When it's gone it's gone - WIGIG. Now that doesn't mean you can't borrow energy, but just like the deficit, it has to be paid back.
When you borrow energy (or "spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you're a little too shrill, a little too twitchy, you're eyes a little too bright, but I'm sure Mr Grayling wouldn't have noticed any of that as he sat talking to the composed little scrap with her make up just so.
After a while, your natural instincts try to step in. "Go to bed" - the thought unbidden takes you by surprise. "Just close your eyes" - the siren call of rest as the adrenaline ebbs for a moment.
In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt.
And then I stopped.
When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you're not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those "niggles" that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain.
And here I am. In a side room on an acute medical ward. So infected, such a blob of immune horridness that I am not safe to be around other humans. I must be screened for scary things, because scary things happen when you are "immuno-compromised". This is not the face you all saw all week eh?
I'm not the only one. We have at least two other spartaci that I know of in hospital - one in intensive care. Another collapsed two days ago after spending a week, non stop, sitting at his computer, building us a spreadsheet with one painful hand. Kaliya hasn't been able to speak for over 3 months as her oesophagus has collapsed on itself.
This is the reality of sick and disabled people fighting back. I can put it in very stark, unemotional terms, but that is what it takes. There is no doubt at all that some of us did this knowing that our lives were at risk. What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard???
Yet most of our media sit comfortably in their glass and chrome towers, desperate to be convinced that we are just a few snatching, greedy, shirkers. All we want is to "protect our special interest group" or "not take our share of the pain" You could see the irritation last week when they were forced to report that all may not be well with the welfare reform bill. Most took the government line. "But Sue, you must agree that DLA needs reform?" When I knew they didn't have the first idea why it might - hadn't read the research, hadn't done their job.
They ignored the coalition we built, they ignored every major charity backing the Responsible Reform report and issuing press releases and statements in support. They ignored the rush of Blairites to confirm that actually, some very bad things are happening. Not one did a serious piece on our research. Not one. they all wanted "stories" - the soldier with his leg blown off refused benefits, or the cancer patient who dies just hours after being found fit for work.
We wouldn't give them. We refused. Because that's not what the Spartacus Report was about. There were at least 5 serious news stories in it, and if that wasn't enough misery-porn for them, then our story will just have to wait.
I'm "in the best place" - antibiotics and saline drips and painkillers are oozing into my blood. Everyone is very kind. The nurse who admitted me knew who I was and actually grabbed my wrist to check my name - "Are you Sue Marsh??? You??"
I have no idea if we will be able to do what we did again. We knew it was unsafe. At some point, we need the more able to take some of the load. We need them to see what is being done in their name. We need them to act. Because we can only act for so long.
Quite the opposite in fact. Far from "freeing" me, work has put me in a hospital bed chained with plastic tubes.
I'm almost certain none of the politicians so glibly deciding our futures know what the "spoon bank" is. If you have a long term condition, then you only have so much energy for any given day. When it's gone it's gone - WIGIG. Now that doesn't mean you can't borrow energy, but just like the deficit, it has to be paid back.
When you borrow energy (or "spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you're a little too shrill, a little too twitchy, you're eyes a little too bright, but I'm sure Mr Grayling wouldn't have noticed any of that as he sat talking to the composed little scrap with her make up just so.
After a while, your natural instincts try to step in. "Go to bed" - the thought unbidden takes you by surprise. "Just close your eyes" - the siren call of rest as the adrenaline ebbs for a moment.
In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt.
And then I stopped.
When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you're not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those "niggles" that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain.
And here I am. In a side room on an acute medical ward. So infected, such a blob of immune horridness that I am not safe to be around other humans. I must be screened for scary things, because scary things happen when you are "immuno-compromised". This is not the face you all saw all week eh?
I'm not the only one. We have at least two other spartaci that I know of in hospital - one in intensive care. Another collapsed two days ago after spending a week, non stop, sitting at his computer, building us a spreadsheet with one painful hand. Kaliya hasn't been able to speak for over 3 months as her oesophagus has collapsed on itself.
This is the reality of sick and disabled people fighting back. I can put it in very stark, unemotional terms, but that is what it takes. There is no doubt at all that some of us did this knowing that our lives were at risk. What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard???
Yet most of our media sit comfortably in their glass and chrome towers, desperate to be convinced that we are just a few snatching, greedy, shirkers. All we want is to "protect our special interest group" or "not take our share of the pain" You could see the irritation last week when they were forced to report that all may not be well with the welfare reform bill. Most took the government line. "But Sue, you must agree that DLA needs reform?" When I knew they didn't have the first idea why it might - hadn't read the research, hadn't done their job.
They ignored the coalition we built, they ignored every major charity backing the Responsible Reform report and issuing press releases and statements in support. They ignored the rush of Blairites to confirm that actually, some very bad things are happening. Not one did a serious piece on our research. Not one. they all wanted "stories" - the soldier with his leg blown off refused benefits, or the cancer patient who dies just hours after being found fit for work.
We wouldn't give them. We refused. Because that's not what the Spartacus Report was about. There were at least 5 serious news stories in it, and if that wasn't enough misery-porn for them, then our story will just have to wait.
I'm "in the best place" - antibiotics and saline drips and painkillers are oozing into my blood. Everyone is very kind. The nurse who admitted me knew who I was and actually grabbed my wrist to check my name - "Are you Sue Marsh??? You??"
I have no idea if we will be able to do what we did again. We knew it was unsafe. At some point, we need the more able to take some of the load. We need them to see what is being done in their name. We need them to act. Because we can only act for so long.
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