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.

158 comments:

  1. Heartfelt thanks and best wishes. My body is more sound than my brain but I may be of use 'next time'? Get well, take care of yourself (yes Y O U) xx

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  2. Clr Ralph Baldwin20 January 2012 07:46

    Well done, never mind the future for the moment focus on taking it easy for a while, politics is a marathon and not a sprint. Your brain will be very busy so if you are winding down I suggest a good book while in hospital. I was wondering where you were getting all that energy....what you did was great it hit the media at every level and it's great to see (as we always do in difficult times) who the heroes and heroines are and all of you behind the Spartacus report have done exceedingly well and you have even embarressed Labour by doing a better job of opposition. It's Tories you have to influence in the Tory Party currently though and I hope they take the trouble of reading this blog article you have written. Your conviction is to be applauded.

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    1. big ((((hugs)))) Sue, get better soon Val xxxx

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    2. Its sad that THERE IS a price tag for every day we try and be "normal" and especially when trying to defend ourselves and others in the same boat,I went out a fortnight ago,and ended up spending the next fortnight in bed,similar story,cold/flu/chest bad,infected weeping sore on neck....Good luck and get more rested soon!

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  3. Sue, you are a constant inspiration. I can only hope you feel better soon, and some of your new legion of "fans" can begin to lighten your workload.

    With admiration,

    Michael Richmond (@Sisyphusa)

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  4. Get well - rest and let your body as weak as it is recover some strength. Where you have lead people are begunning to follow, domain name for a website, the consultation being simplified so people can participate.

    Without putting to finer point on it without you and the others none of this would of happened. The best thank you we can give you is to share the load and mobalise - we need your knowledge and inspiration, tactics and savy knowledge but each of us are spartacus

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  5. Get well and some well deserved rest. They cannot understand how the mind can only overcome so much before the body gives out and you endured in the face of negativity and lies.

    You now have an army of Spartaci that are there for you.

    Hugs and Spoons

    Mark

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  6. Shame on Millipede for letting the sick and disabled do his work and have to pay such a high price. Maybe when you are feeling better you could give him a few tips on how to run the opposition :)

    Bless you Sue, take time to get better for us.

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  7. Sue, Cyber hug on its way right now. Take care of yourself or let them wonderful nurses do it. We are not beaten yet

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  8. Get well soon Sue.
    You, Kaliya and the rest of the team have our deepest gratitude, but now it is time to take care of yourself. The disabled community will be for ever indebted to you for your selfless work. Work and research that should have been undertaken by the many charities that are supped to protect the sick and disabled.

    My best wishes for a speedy recovery

    Christine

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    1. Christine, you've used the very words I've been talking about;its time for the big gun charities with their paid staff and CEOs to do their bloody jobs and and run with the rest of us.

      Sue, I know it's a strange thing to say but maybe this relapse has been a good thing; you need to take care of you, so you can get well enough to come back to us. Every good wish to you and yours

      Jayne

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    2. We should send this article to all the fat cat CEO's of charities who for too long have either sat on their hands, obsfucated, been co-opted in return for contracts or even supported the reforms!

      shame on them...

      take care Sue

      and no its not emotional blackmail as i suspect some of the CEO's and indeed the media will do..

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  9. ooops spelling error, Spelling correction to last post 12.23, should read supposed to protect the sick and disabled

    Christine

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  10. Showing my age here, but on home education campaign a couple of years back - sleeping in my clothes to save time etc - my theme song was Jackson Browne's Running on Empty.

    I'm just going through some new asterisked amendments from Lord F in 5th Marshalled List released a few minutes ago http://www.publications.parliament.uk/pa/bills/lbill/2010-2012/0114/amend/ml114-v.htm
    Not sure how far they will get at Report on Monday but Report finishes on Wednesday
    http://services.parliament.uk/calendar/#!/calendar/Lords/MainChamber/2012/1/23/week.html

    I'm getting the impression that there'll be some useful negative publicity about contradictory PIP assessment criteria before 3rd Reading on Tuesday 31st.

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  11. Sue, so sorry you are unwell but hardly surprised as you have put so much into this campaign. Please take good care of yourself and let those around you give you the TLC you deserve. You know we are all thinking of 'wonderful you'.

    With very best wishes,

    Jayne (@Ricalajay)

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  12. Sue, I sincerely wish you, and all the others who are in hospital or collapsing, all the very best for a speedy recovery. I understand how you must feel that you, and others, will not be able to do it again. And you shouldn't have to.

    That is why we must use all avenues to keep reminding the government that we are here.

    I have been watching the epetitions website.

    Anne Williams had a petition for her son Kevin, one of the young people who died at Hillsborough. A couple of weeks ago, her petition was neck and neck with Pat's Petition. In just the last week, Anne's petition shot up to well over the 100,000 signatures needed to be considered by the government. The whole football community got behind her and made sure she got her 100,000 signatures.

    I find Anne's Petition hugely inspiring.

    Anyone who supports disabled people and carers should get behind Pat's Petition. If everyone worked together and promoted the petition as widely as possible, we could get Pat's Petition to its 100,000 signatures in weeks.

    I ask everyone - not just Sue, Kaliya and a handful of activists - to get behind Pat's Petition. Promote it, talk to your local papers, speak to your friends, colleagues, councillors and MPs, tell everyone what all the changes and cuts mean to you. Tell them what it would mean to lose DLA at the same time as your local council is cutting the services you rely on. Mention that this is at the same time that the NHS is having the biggest shake up in its history. Describe how losing legal aid may affect your ability to appeal any decisions. Shout about how ending the Independent Living Fund is having disastrous consequences for people you know. The list could go on and on. You have the examples of how all these changes are affecting disabled people and carers. Tell people and give them the link http://epetitions.direct.gov.uk/petitions/20968 - make them want to sign.

    Sue has done so well and given so much. Now it is time for all of us to work together and carry on this fight.

    Let's get Pat's Petition to 100,000.

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    1. Pats petition is now on page one of the e petions site. Lets get it up to the top.

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  13. I and many others have benefited from your hard work and I am sad to see the cost to your health it has caused. Our prayers are with you and hope you get better soon
    Jim

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  14. .... well, it doesn't mean you can't stuff envelopes though. good luck, Lord Fraud. By the way, we'll be reassessing who exactly pays for the spoon bank - what's it made of and is is Chinese because I'm sure we can make it better in the UK?

    word check - ovecomfi!!!!(not making it up)

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  15. Sue, get well soon (that's an order, not a polite saying!) and THANK YOU to you and the other spoonies from the bottom of my heart for all the campaigning that you do . I couldn't help but wonder if the reason the Nursing and Widwifes finally abandoned their support for the NHS reforms was because they'd seen what great things had happened with the Spartacus Report and The Welfare Reform Bill. I'm going through the DLA appeal process at the moment and because of the publicity about the erroneous DLA decisions, I am having a number of health professionals willing to write letters to supplement my claim without being asked. Linda K

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  16. It's quite amazing what people have sacrificed to get the Spartacus Report out and have been faced with the battle against media apathy (or censorship).

    What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard?"

    People have already died because of these "reforms" and it was barely noticed. Each day there's another headline about benefits ("scroungers") and it seems like all the work, all the effort you put in that's put you in hospital and affected the others so adversely, has been wasted.

    I don't know what it would take for people to take notice. A mass chain-up at No. 10? A mass suicide at the Bullring? A traffic stop campaign in major cities using wheelchairs etc.?

    Who knows? I just hope - one immunodeficient to another - that you get better very soon.

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  17. Sue won't 'get well' of course. The best she can hope for is to get back to baseline, a level of illness that allows her back home. When we borrow energy, we pay back at 1000% interest - and sometimes there's just not enough left to clear the debt.

    I guess that's the thing I hate most about being chronic sick, that I am such a lightweight. My energy account is bumping along the bottom, and if I foolishly go into the red, my loan sharks are without mercy.

    But Sue, you know how much you inspire us to carry on. For the sake of all the sick and disabled that will follow us, not for ourselves (I bet you didn't get that appeal form in, did you? Is there still time?) but for our fellow and future spoonies. Pace, Spartaci, delegate, share, and carry on.

    Bless you, Sue. Rest easy. You did far far more than your share.

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  18. Reading this in floods of tears, take care Sue Get better soon.We know the reality behind these government "reforms" and hopefully sometime soon so will everyone else. But for now I'm sending you my best wishes for a speedy recovery. We are all Spartaci and we will not be defeated by these Bully's. We have something the Government doesn't Love and compassion for our fellow human beings disabled or not..

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  19. Oh, Sue, please take it easy and let your body heal! I feel honoured and humbled to be doing my little bit to take the campaign into the next phase. Take care of yourself xx

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  20. I have emailed the labour part the best I can......


    I am a sick person relying on DLA and Incapacity Benefit. I am struggling to write this but like thousands of others I need to be heard.

    When I heard of the coalitions plan for welfare reform I was devastated. I had hoped that the labour government would speak up for us. The more I heard about the changes the more I was convinced that the labour government would speak up for us. But no, nothing. We had no voice we could not march or demonstrate we just had to take it all, fear, despair, victimisation and persecution. We are undergoing continuous Atos assessment which cause much anxiety and in most cases worsen our condition .We are called scroungers by the media encouraged but the government. No media coverage of what we are going through, only coverage of us being scroungers.

    Then came Sue Marsh, Diary of a Benefit Scrounger and Spartacus. A group of sick and disabled willing to speak out and fight for us, a voice for us. At last there was hope! However, since the Spartacus report Several of the campaigners have become ill and some have been hospitalised. Sue Marsh was left almost single handedly to try and fight our corner, she was amazing and with all due respect, has put your party to shame! Now she herself is seriously ill in hospital caused by the work she has been doing to help us, your work! I am so angry that labour has chosen to ignore the cruel injustices that the government is putting us through, please listen to us, go to Sue Marsh website Diary Of A benefit Scrounger, see what is happening and please help us we are in crisis! You made Sue Marsh and others sicker than they already were by not doing your job, shame on you Mr Milliband!

    The government are falsifying figures and claims, and hiding the truth. Read the Spartacus Report, Where are you Labour!!!! How much money is the government wasting on the continual harassment and assessments of the sick and disabled, How much money is the coalition paying Atos for unfair and often wrong assessments, wrong because so many are being overturned by appeals. Help us please publicise this injustice.

    I want to write more, I have so much to say but have no energy or brain power, Sue was my voice and now that is broken.

    Yours Sick, angry and frightened,

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  21. @charissa_stillME20 January 2012 09:40

    I am so sorry to hear you are in hospital. You have put everyone & our cause before your own health. You now need to take a complete break until your health improves and you regain your energy.
    I personally cannot thank you enough for what you and your friends have done and truly wish I could help; but unfortunately I am bedridden, have no voice & barely able to spend much time online. Believe me though I am with you in spirit wishing you well & spurring you on.
    I really don't know what it's going to take for those idiots at No 10 to sit up and listen; yes DLA needed to be updated but what was wrong with just tweaking bits of what essentially worked? If award is given indefinitely then checks could be done with GP at two yearly intervals etc. A far more simple & cost effective solution to the fortune they are wasting on PIP!
    Anyway please takevthis time to have a rest and let your body recover to a manageable state.
    The very best of wishes Sue x

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  22. You and the Spatacus Team are winning, but at such a high price. Please take it easy and allow some sort of recovery.
    On last nights "This Week" Spartacus got a mention and the wonderful "wobbly" lady Francesca Martinez kept the politicos in check so let others take up some of the strain.
    See Francesca at 35 mins onward

    http://www.bbc.co.uk/iplayer/episode/b01b4wmk/This_Week_19_01_2012/

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  23. Rest easy knowing not only did you hit the government with a side swipe they where not expecting but stirred up a hornets nest of anger in the disabled community that until last week had no coherent voice... now we do! and we have you and the gang to thank... If I can help in any way contact me please... Debbiexxx

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  24. "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" - why is this SO hard for ATOS assessors / DWP to understand?

    Wishing you all the very best and hoping that the tremendous support for you, which is clearly evident, goes some way in helping you to recover to a level of wellness where you are able to enjoy the satisfaction and fulfilment of being an inspiration to so many. xxx

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  25. You are such a lovely lady. And here we are needing you, and taking strength from you, but it's also very unfair. Please get well.

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  26. Sue, thank you for all you have done for us. Next time there will be more - and more abled - people ready to lend a hand. That is your legacy.

    Get well soon x

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  27. Sue, You have been beyond incredible. Everyone disabled - or who cares for a disabled child or partner - owes a huge debt to you. Thank you for everything. Annie

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  28. Am wondering if the Govt know (or care) how ill Sue and the other Spartacii are. Or can extrapolate that fact to where all us carers/disabled people will be when our incomes are taken away. The NHS is going to be inundated with seriously ill disabled people and ill and exhausted carers. You take money away from one area....you only have to add it to another.

    Get well soon Sue and all - but not too soon that you don't have a proper, long rest first.

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  29. Hi Sue please rest up and take care of yourself. You have a real Hero and inspiration to us all

    @daz_sheldon

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  30. Sue - you are an amazing lady, but you have nearly killed yourself in your concern for others. Please rest now and let others continue the fight.

    To everyone else reading Sue's blog - let's get to it - in Sue's name and in the name of those we love who are affected by sickness or disability

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  31. Get well soon.

    Best wishes

    Joe

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  32. Try taking colloidal silver, that's what we used to use before Big Pharma seduced us all into taking pills. It's from the days before antibiotics. I find it very useful.

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  33. Sue, if love could heal the amount out there for you would do wonders.

    x

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  34. Hi Sue..
    every time you or Kaliya is even more ill, we all come on, quite naturally, to wish you to be as well as possible & home again... We don't come on & say we hope you make it, though at the back of all our minds we have that worry about you & each other...
    Real love & concern for each other has grown in the spartaci community but the reality is we are a virtual community unable to physically be there for each other..
    The truth is that Sue & Kaliya & others can't delegate because delegating takes spoons & so many of us are running on empty... Will DWP say we have done it to ourselves, that this desperate plea for fair reform is actually 'illness behaviour'?
    Sue you talk about those days after using spoons & adrenaline where we feel a strange sadness before we collapse.. We have been quiet since the DLA vote & it's not just because we are horrified & disappointed.. it's also because we are exhausted... I have been in that sad, dark' unreal place since the Monday of the ESA vote & collapse may or may not be imminent but I am totally on empty & so frustrated that actually I can't do what I want which is to show the disgrace of the PiP which is not a reform of DLA but an interrogation list created to shrink as few as possible to fit... The truth is that last line is the sum of my opposition right now...
    I think the worst part is knowing that Mp's etc know what is happening & what they are doing, they know we know & they know that the majority do not know...
    Every day & night that I tweet or leave a comment like this I am terrified that I have been put on a list as a baddy when actually i can't stop asking them to be fair..
    Again you could ask if this obssession with responsible reform is illness behaviour but you must also ask how it was triggered & why there is no resolution to it?
    In the PiP mobility descriptors if you can walk 50 yards with a stick you do not qualify... There isn't even a mention of mobility problems caused by Mental Health illness or seizuers etc; or of so many other conditions.. If you are blind & can't even feel your legs but can flannel the top of your body you are in trouble...
    So let's be clear the government is not taking disability/illness support from those who 'least' need it! Otherwise Sue almost certainly,would not be where she is today!
    So how do we get support from people with lots of spoons?.. There is so much that we need to do now & we won't be able to do it.. We spoonies try not to be negative: "We didn't get the vote but we did well"... "We'll be ok after a rest"... The trouble is we are not ok & though they said on 'This week' last night that we are now in the spotlight they did not mention ignoring us for the last 2yrs or in fact that it came too late...
    I'm sorry for going on but Sue's husband & children have a wife & Mom seperated from them right now & Kaliya is struggling on quietly... & the rest of us are rounded up ready to be pounced on like the cat's mouse...
    I am spartacus... Nita

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    1. Of course the Government know, and of course they are indifferent. But I think they were counting on the majority of people NOT knowing, and also being indifferent, and that might have got a bit more difficult. I may be being overly optimistic, but I am not sure I have seen anything quite like this before. Fighting back with facts and figures, using the internet, calling the charities to account. Personal politics with a small p can change attitudes. This government is not getting anything much right, and once it dawns on the Daily Mail readers that they are not exempt - who knows? No miracles, unfortunately. But worth it.

      Get well. Take care. I have been running on empty for a long time, but still in there.

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  35. Best wishes Sue, and to all Spartaci who are also suffering. I'm sure lots of us have been running our ideas past people like Sue who have been working beyond what their bodies can really cope with for months, maybe years. It's got to be time to reorganise and work together in a different way, to allow everyone who needs to recover all the time it takes without losing momentum. Love to all, Chris xx

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  36. Dear Sue

    Rest easy, mate - you, Kaliya and others have done your bit. We're ready to take our share of the task - all you have to do is tell us what needs to be done. For my part, I speak out on the Guardian's Comment Is Free website whenever some ignorant or ill-informed Troll tries to smear us and other Disabled people. I know it's not much, but it's a start.

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  37. We can do it again. Even if Sue can't (and I fervently hope she will be able to), we know what we can do now. Even if the media basically ignored our report, we know it rattled the Government, even if only a little.

    We can build more of an organisation, a network. We can work out processes. We can keep fighting where we should fight, and engaging in constructive discussion where that's more appropriate. We know that however weak we each might be, we are strong together. Where one person falters and has to bow out, there are several more willing and able to take their place, if only for a little while.

    Sue, rest. Okay, you don't have much choice in the matter, and you can't really 'enjoy' the rest in the position you're in, but do you best. If you have one of those annoying bedside TV things, veg out to some junk TV. Read, if that's what you enjoy. I wish I could visit you and offer support in person, but there are so many reasons that's not possible ;)

    You done good. We'll keep the fires burning while you recover.

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  38. Jace - No, I didn't get my DLA appeal in. I have a few days left though.

    Thanks for all the lovely messages everyone xx

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  39. Maybe we should be emailing the BBC and media explaining what is happening to us and asking them why we only seem to get adverse publicity.

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    1. Sue, in a fairer world you,Kaliya and all others paying this dreadful price for campaigning way beyond your limits, would be gifted the TOTAL spoon collection of Lord Fraud, Grayling and all the usual suspects.
      So in this unfair world, I can only add my heartfelt thanks to all the others,and wishes for you to rest and heal as much as your body can.

      Anonymous above, yes media do need to see the reality of the post-adrenaline fall-out. I can't remember who interviewed Sue on World at One on Tuesday at 1.25pm, but thought that for once she(Sue) was given marginally more time to get the points across.
      Amelia Gentleman, Patrick Butler and Polly Toynbee have all been very good in the Guardian; Sonia Poulton in (amazingly, as we know!) the Mail, also Matthew Norman excellent in the Independent (Article I saw was in the "i" - on 18.1.12, not sure if same in main Indy).
      Private Eye has been exposing the UNUM/DWP links on and off since 1995 (most recently November 2011). And of course, academic journalist Jonathon Rutherford's article on the same subject in "Soundings" is essential reading(but takes many spoons to read)

      http://www.digitalvoice.eu/?p=119

      I wonder if he would write an update, bringing in events of the last few years.

      Sorry, this is too long - point I'm trying to make is these people and others, eg politically aware comedians like Mark Steel and Mark Thomas, Stephen Fry, they have energy and bodies that work, are articulate. A collaboration of such people keeping the issues in the open would be a help.

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  40. Time for you to take some time out and get some rest. If proof was needed why this vile Government is so wrong is the fact they have forced sick people to have to fight for basic entitlement to decency.

    Ian Duncan Smith, Chris Grayling are cruel people as are any MP or Lord who supported vile changes when there really is money to pay for decency, it’s just this Government petty ideology and hatred of benefit claimants is more important than people’s lives.

    You have given so much to this fight but now you have to step back and recover. The basis of much that is happening now is on the work you and others created with the Spartacus report. You can be very proud of yourself and all who worked to make people listen.

    There is much the Government could do but chose not to. Only by fighting will we change attitudes and expose the wrong they are doing. Yet for that you need not to kill yourself. All of us who are sick and disabled are proud of you and admire how you took on the Government and showed up their vile spin over scroungers.

    The battle is not over, but put yourself first for a bit Sue, you and the others in hospital.

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  41. Dear Sue, Get well soon - there are a lot of us willing you better..............& thank you so much for all you & the other Spartici do on our behalf

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  42. Stay strong Sue. Hope you're home and comfy very soon.

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  43. Sue and Kailya and those others involved in the report please now concentrate on your health and your needs.
    There is an army of Spartici now and we are on the march. Please take up the offers of help - I'm in Sussex I've emailed you before I'm on Guardian CIF as MissH - when you're ready. Please just concentrate on yourself, every army needs leaders. Angela

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  44. I hope your rest is helping Sue. Your work has been inspirational. Please keep us posted in the meantime we will bother and retweet and spread the word to whomever will listen and be louder to those that won't/don't want to.

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  45. Get well soon Sue, and all the others. Concentrate on you for a bit, it is up to everyone else now to start taking a bit of the load each so that it is more evenly spread and the onus isn't on just a few people.

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  46. What has happened to you and others as a result of campaigning should be highlighted in the news as evidence of what happens when someone with a long term condition is forced to work!

    All of us with these conditions, who have tried to stay in work at the start of our illnesses, and when that was not possible and we had to claim benefits, were forced back into work again and again because we could not obtain disability benefits, have ended up with the long term consequences of that.

    They said that obtaining ESA was much harder, but IB was just the same if not worse. The same assessors that worked at the assessment center in my town are the very same people who now work for ATOS. Although I finally managed to obtain disability benefits under the ESA system, it was clear to me that you were expected to work until you dropped. It's almost like they want you to be so physically compromised that you are likely to face an early death, which of course suits them better; they pay far less out as a result.

    Sue, I truly admire what you have done. You must pace yourself now however, and delegate the work to other people because what little quality of life you can have is precious. It would suit the government for you to just give up; they are hoping we all will. Hopefully you will be able to find the right balance.

    Take care; thoughts and prayers are with you.

    Clarebelz

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  47. So sorry to see the price you have paid Sue. I trust you will recover soon.

    History will record you as the equivalent (but living we trust) for the 'Disabled Spring' as Mohamed Bouazizi was to the Arab Spring; the inspiration for the fight.

    Now if we are ignored and put down we respond, the time is now;

    Boycott the 2012 Paralympic games; don't buy tickets, sell them back, encourage athletes not to take part, then the media may listen and learn about our just cause.

    How can they sit in their plush seats and 'take our care but cheer our medals'

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  48. Dear Sue, Kaliya, and everyone who has busted their gut, compromised their health, drained their internet data but kept on going, spent the night tweeting and updating and supporting others on Facebook, ignoring their housework, their appetites, their kids and partners, telling everyone they know about #spartacusreport, making phone calls, emailing their MPs and Lords, lobbying from their sofas, armchairs and beds, and doing a million other things to keep this outstanding, life-changing campaign going:

    I SALUTE YOU.

    We Are Spartacus. We may fall to our knees but we will stagger to our feet, to our wheelchairs, to our beds. We may be doomed to poverty but we will never be poor in spirit. We may have less robust bodies or minds but we have strength in numbers. We will never stop fighting. We earned our right to what we are entitled from the moment we were born, or became ill or disabled, or were diagnosed. We Are Spartacus and We Will Prevail.

    ReplyDelete
  49. I hope the rest is helping Sue. You are an absolute inspiration.

    The work you have done is simply amazing, especially in the face of a media bending over backwards to shill for the government with regards to welfare reform. I'm on Cif as the name below and would love to help more and get more involved.

    Now though, just concentrate on getting the rest and medical care you need.

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  50. 'Thank you' is not enough - but they are the only words I have. Thank you for putting this before your own needs, for driving yourself to exhaustion on our behalf. Now it is time to rest and regain some energy - not just for our sake but because you are important in your own right.

    Sue, Kaliya and the others have set Spartacus in motion, it is up to us all to keep it rolling, to make our voices so loud that we cannot be ignored, to force the world to see and hear us.

    We are the Sppon Army!

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  51. Get well Sue.

    Time for me to step up, instead of you to allow you to rest and regain energy.
    Right now at least my disability's don't stop me from walking and talking..
    And I CAN talk about DLA / PIP and our struggle with the DWP and Lorn idiot Freud.

    Come summer 2012, there will be protest at the Olympics, because of the DWP and Lord Freud.. #justsaying

    Email me, with what you need doing - and I'll see how to go about it (without it costing our DLA / Working Tax Credits etc).

    lots of hugs.

    SD

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  52. get well soon, and thanks, may you continue to inspire, best wishes.....

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  53. Oh, so you're where I was for four weeks Dec-start of Jan. I got shoved in isolation due to immuno problems cos CMV virus decided to kick my arse. Now I'm dealing with pernicious anaemia. Crohn's, immunosuppression, and being chronically ill + crippled just plain SUCKS.

    Get well soon, Sue, we all miss you. I hope you recover faster than I did - four weeks sucks in hospital. I'm trying to stay out of another stay. *lots of hugs and snuggles*

    mathsie

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  54. Oh Sue, so sorry to read this post. We must fight but we must also sometimes stop to remember why the fight started. Please take very good care and don't worry about a thing until your spoons are fully restocked!

    I've only recently 'met' your husband on Twitter- please ask him to keep us posted on your health.

    All I can do is link this post at both my blogs. It doesn't feel like enough but for what it's worth I hope it helps a bit.

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  55. We spoonies know and understand the cost, Sue. Thank you. Much love to you. Get 'well' soon. Next time perhaps more of us can share the load. I want to be counted in. XXXXXXX

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  56. Grayling , Miller and IDS , their spin doctors and SPAD's , the DWP , ATOS Origin and the Tory tabloids and broadsheets will probably accuse Sue of being a lazy malingerer . I'm surprised UNUM haven't sent someone round to the Hospital to sell a " Protection " Insurance policy that they've absolutely no intention of paying out on .

    Work will put you in hospital ..you won't get " bemused " Grayling saying that

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  57. Thank-you .... "for blog" .... right there with you today in similar hell...(don't do that again tho)....which is what I tell myself ..but never seem to learn ..catching up always seems more important at time ... then pain reminds me what ME/Cfisds is about...

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  58. You're made of tough stuff, lass and every scrap of effort you put in has given hope to thousands. We're all wishing you a safe and speedy recovery. There are a lot of us out here willing to share the burden of any future campaigning but you're right; More of the well and able should be helping us in this fight.

    Hang in there, Sue. We love you.

    ~ Ebony

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  59. Dave Tilley (Tilsit)20 January 2012 13:48

    Sue

    Concentrate on yourself and recharge those batteries. We are all thinking of you and supporting you.

    DT

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  60. I am sorry to hear about your problem and hope you get well soon! I'll be forwarding this to my friends and family to raise awareness.

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  61. Dear Sue, So sorry to hear that you are suffering so much after such a herculean effort on behalf of so many people. Please now take the time to rest and re-charge your tired batteries. Hoping for peaceful sleep and healing hands to help you along the way. All best wishes. Anita @advocexcel

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  62. Sue,
    My thoughts are with you, I hope people come to realise the day to day reality of being disabled and take inspiration from the work you've done to fight these punative welfare reforms.

    Josh

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  63. So sorry sue to hear of your relapse i hope IDS and lord freud come to see you as they will then be able to see first hand on what it's like to try to work and end up worse then when you started

    I'm sure the prime minister will be aware of your plight
    As for someone stronger to take on some of the load i'm not sure that will be possible as they would have stepped in by now if they were able ?

    All the very best to you and hope you get home soon

    warm regards

    ReplyDelete
    Replies
    1. have a feeling that if IDS and Fraud went to see her she would be even more sick!

      Delete
  64. thinking of you and hoping only good things come your way..

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  65. Sue, you wonderful lady, thankyou for all your hard work...WE WILL MAKE THEM LISTEN... sorry to hear your spoonless and in hospital... x sue

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  66. Sue Marsh – You are incredible. You are an inspiration, a true Champion. I sincerely hope you take the time to properly rest yourself, and to give body and mind time to recouperate. You’ve done so much, all of you. Your collective personal sacrifices are Heroic. We’re proud, and so very grateful.

    I speak as the full-time carer of my disabled partner who has severe, unstable, inherited epilepsy, and who is living in fear waiting for the ATOS appointment letter to arrive.

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  67. i have sent a email off to the royal household addressed to everyone with a link to this blog highlighting that a few words will go a long way in helping out or a least to cheer you up sue
    I will follow up with a letter next week

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  68. I knew nothing of Spartacus until an ESA50 arrived last week.I just watched a tape of Newsnight. I am so sorry Sue that you have had the inevitable crash and that you have run out of spoons and money I just donated £20. I have Fibro, Hypo, chronic pain,IBS etc etc and have been on IB 7 years, even moved to France as the climate helps. I will get nothing at all soon as I doubt I'll get into the 'Support Group'.I see that 'they' will change the residence status to 'habitual' for PIP/DLA no matter that we ex-pats paid NI for years before being too ill to work and we don't bother the NHS anymore. I will loose my E121, god knows what will happen to my pension in 17 years time! It is costing me lots of spoons filling in the ESA50(France) I have cried many, many tears this week, some for me and many for you and Kaiyla.

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  69. I think we all knew that all the work you have done over the past few months would take its toll. I hope you have a speedy recovery, at least back to your normal health.

    When you become disabled….. When you become disabled, you find yourself auditioning for the role of a lifetime, then, after interminable rehearsals, you’re finally starring in a horror film – a talentless, irresponsible, and above all low-budget horror film.”
    (with apologies to Martin Amos)

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  70. Get better soon Sue, best wishes!!

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  71. A lot of us here know this one well, Sue. I feared it might happen when you started on the campaign, but figuresd that you were making an informed decision, and it's one which has won you my abiding respect (along with that of many thousands more, I'm sure). Personally I pace myself - I have a lot of battles to fight - but that means that I shall be able to continue to do bits of work on this campaign, and I'm sure there are many others in the same position. It won't stop here, no matter what happens to you. But you've been a fine leader, and we value you for _you_, so take care of yourself, okay? One day things will get better and we want you to be here to see that.

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  72. Best wishes to Sue and other Spartaci that are currently unwell.

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  73. I hope you and the rest of the Spartacus team feel better soon.

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  74. Love and best wishes.

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  75. SPARTICI FIGHT BACK!

    Rest up Sue, Kalyia and all. You have earned it. There are so many more of us who can fight. New website:

    http://wearespartacus.org.uk/2012/01/19/spartaci-fight-back/#comment-6

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  76. I would like to make a regular donation to the fighting fund. I am wondering:

    * If the donations we are making are going into a PayPal account in Sue's name. (I think they are.)

    * If PayPal would set up a standing order to pay money from my account to Sue's - or to any other Spartacus account she might choose to set up.

    * If my bank would set up a standing order to pay money into Sue's PayPal account.

    I'd better start finding out.

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    Replies
    1. Well, my bank says they would set up a standing order from my account to Sue's PayPal account, but I would have to know her sort code and account number. That does not sound appropriate for this sort of operation.

      By the way, is someone grabbing a domain name for a Spartacus website? There don't seem to be many left - there are lots of Spartacus websites out there.

      Delete
    2. I can sort a domain out free and in an instant. Any ideas for what name to reserve?

      Delete
    3. spartici?,
      have more spoons than we know.
      best of british and ta

      Delete
  77. What can I write that hasn't be written above many times over and thought even more times? Sue, get well sooner than soon.

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  78. Much, much love and thanks to you Sue, Kaliya, and all our team.

    Thank you also to those who have, for setting up this new 'Spartici fight back' website!

    Is there anyone amongst us willing and able to coordinate Spartici voting on the 38 Degrees website, so that we also stand a chance of enlisting effective support from there?

    I've written to Avaaz, asking them (a personal request) to consider helping respond effectively to the UK Welfare changes; I referred them to this (Diary of a benefit scrounger' blog) for information. (The Avaaz website is http://www.avaaz.org/en/about.php)

    Love to you all

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    Replies
    1. Avaaz - great idea! 38 degrees, don't bother - people have been trying for over a year to get their support, they just come up with one excuse after another. slightly suspicious. don't waste your energy with them, go straight to avaaz.

      Delete
  79. Whilst my tears wont help, Im sitting here crying buckets at what this fight is doing to us all. Im am so sorry it has taken such a toll on you sue, and the others. All I can say at this time is I appreciate EVERY LAST THING you have done for us all, nothing you have done has gone unnoticed or unappreciated by anyone of us Spartaci, our friends, loved ones and supporters. We love you dearly and wish you as speedy and safe a recovery as possible. xxxxx

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  80. While Sue and Kaliya are ill we can all do something

    Sign, retweet, get friends and family to sign Pat's Petition so we can get a debate in the House of Commons.

    http://epetitions.direct.gov.uk/petitions/20968

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  81. Sue

    Please look after yourself as best you can, and allow yourself to be looked after as much as possible! I am devastated that you have had to pay this price and appalled at the cowardice and apathy of those who should have been taking up the cudgel on your - and our - behalf. It remains that you are a true inspiration and force to be reckoned with - a mover and a shaker in this world, infirmity or no! I am sure that your legacy will continue whatever you decide or are able to do or not do - but that as a brave and compassionate person you have such value in being the person that you are. I thank God for Sue Marsh. xx

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  82. I'm a little ashamed at myself for tweeting madly and calling for a big day of disabled activism off the back of the HoL vote, more struggle must've been the last thing you wanted to think about, you deserved to be heard and you deserved to win, you should never have even had to fight. I was so wrapped up in what the cuts and changes will cost disabled people, i didn't really think about what just fighting back was costing. In the same way that stress and work has made you ill, I hope the amount of support you receive helps you replenish your energy and recover. What you've written today should be burnt into the retina of every person, every political cog who has been a part of the machine that's driven welfare reform with such single-minded, blinkered determination. Get well soon Sue Marsh, Dave @crtivcornercafe.x

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  83. A senior disabled MP is to examine the government’​s failure to respond to allegations that it misled parliament over its disability living allowance (DLA) reforms.

    Dame Anne Begg, the Labour MP who chairs the influential work and pensions select committee, this week raised serious concerns about the government’​s “​overly dismissive”​ response to last week’​s Responsible Reform, a ground-breaking report by disabled activists.

    Dame Anne described the Responsible Reform report –​ also known as the “​Spartacus Report”​ –​ as “​coherent and consistent”​ and a “​detailed analysis”​ of the responses to a government consultation on its DLA reforms.

    But the Department for Work and Pensions (DWP) has been heavily criticised for avoiding answering a series of crucial questions about the report.

    Now Dame Anne has told Disability News Service that her committee will consider –​ in its current inquiry on DLA reform –​ how DWP responded to the Spartacus Report.

    She said: “​Certainly I have concerns about the fact that [the DWP response] seems to be overly dismissive. I think this is a serious piece of work and is a serious analysis of the responses to the consultation.

    “​I am consistently disappointed about the way that DWP is handling information around this subject and is not taking seriously what are well-argued and well-researched points.”​

    She and other members of her committee have been outspoken about how DWP has issued information to the media, MPs and the public about disability benefits and welfare reform.
    Last month, Dame Anne accused the disabled people’​s minister Maria Miller of being “​evasive”​ throughout an evidence session for the DLA inquiry.

    She has also accused Miller’​s fellow ministers Chris Grayling and Iain Duncan Smith of appearing to encourage the tabloid press to run stories attacking disabled benefit claimants.

    A fellow committee member, the Liberal Democrat MP Stephen Lloyd, accused the DWP last year of “​pandering to the Daily Mail”​ in a press release about employment and support allowance, the new out-of-work disability benefit.

    A DWP spokesman said: “​The work and pensions select committee has yet to publish its report and the government will respond to the report after its publicati​on.”​

    ReplyDelete
    Replies
    1. This is actually good news, where is this taken from? Have a link source?

      Delete
    2. http://www.candocango.com/dla-reform-dame-anne-set-to-probe-dwps-spartacus-evasions/

      Delete
    3. http://www.benefitandworks.co.uk/benefitnews

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  84. You are an incredible woman and a true inspiration.Please look after yourself , you have done so much , we are forever in your debt. It's time for us all to stand up and be counted and your bravery has opened the door for us to do that.Bless you x

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  85. Dear Lord. I hope you get better. Rest and, uh, suck in those infusions. FWIW, you have produced a magnificent document that is useful internationally

    Please take care.

    Mary

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  86. You are amazing. I hope that you feel much better soon.

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  87. I have just caught a sentence on the BBC news, I wasn't listening properly as was in the kitchen. They said something about are disabled people being treated unfairly and something about a report on the politics show on Sunday. was I hearing things or did anyone else here this?

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  88. Thank you to you and Spartacus team. Take care now.x

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  89. My heartfelt thanks doesn't express it enough. I believe as disabled people we owe you all (sparicii) massive respect for the mental and emotional, let alone physical energy you have expended to get the report together as well as all the blogging, appearances etc. So if the words Thank You don't sound enough, it is only because I can find no better phrase.

    And yes, I sent your report to 2 archbishops, 22 bishops, 2 RC archbishops (on the basis that the bishops would be most appalled at the falsehoods you revealed), my MP and for response from DWP. Of which I got the most appalling letter back from DWP saying we welcome the views of disabled people (ha the irony was beyond words!!!). The rest have yet to reply. Who knows what effect it is still to have on any number of public officials who have read/will read your report.

    No, it didn't get the media attention it should have, not for want of trying. But I note that the thresholds points were published on Tuesday under the radar (and far too late at that too) and I wouldn't be surprised if that would have been a higher scores without the Spartacus report.

    Take care now, and rest up. A pack of spoons is coming over the ether and a massive massive thank you.

    ReplyDelete
  90. Hugs and thoughts with you. Thanks for sacrificing so much.

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  91. You and your Spartacus team are an inspiration and have made us proud to wear the I am Spartacus twibbons! Get well soon

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  92. I echo all that has been said regarding Sue's sacrifice and the rest of the team.

    I understand that it is in the news tonight that the Lord who got his way in the end...is saying that "No one is suffering because of the cuts in Welfare!"

    I hope to catch up with what he actually said and to whom later...I assume it will be reported on the main Radio 4 programme at 10pm.

    Its to be hoped that nothing horrible happens to him or any of his loved one's...the only difference is that he will not need to ask for help from the DWP and probably is rich enough to pay for any care needed.

    He'll not be walking in our shoes anytime soon...

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  93. This comment has been removed by the author.

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    Replies
    1. Bright blessings, Sue. You must get better and rest now and recharge yourself, no more overdoing it. Everyone is so grateful but you mustn't put yourself under any more pressure. Others will and are fighting on. xx

      Delete
  94. Hope you get the rest and recuperation you need to feel better

    You helped a load of disabled people find a voice and use it, you helped a load of people feel there was hope, you helped a load of disabled people feel empowered .

    You helped us get important and influential people with no choice but to listen to us we grew very quickly as a group and we are no longer just loads of individuals wanting to do somethong but not sure what to do.. We are Spartacus and together we are strong.

    Take the time you need to get well .. and that's an order!

    ReplyDelete
  95. In answer to Anon above:

    It was Ian Duncan Smith who told the BBC 6pm News and website that people are "not suffering" as a result of his welfare reforms.He was asked about the upcoming Lords fight over benefit caps.

    "Asked if the cap was really a distraction from the changes to disability benefits, ESA and housing benefits, from which people were suffering, he said: "But they're not suffering. The point about this is that what makes you suffer is the state that plunges you into dependency."

    This is the man who dropped everything and took over 6 months off work to be at home with his wife Betsy when she got breast cancer (and got emormous sympathy) while she went through "gruelling" treatment. This is the man who now wants to make other people with cancer go to work, nevermind their husbands.

    While his leader, Cameron, claimed DLA for his son(and got enormous sympathy) They now want to abolish it for other children and adults.

    Funny isn't it, how the public had sympathy for these millionaires, still getting paid their salaries from the public purse while they took time off or received state benefits.

    I guess grief and disease must be so much worse for the wealthy, or somehting. They got sympathy from the public. We get hatred.

    ReplyDelete
    Replies
    1. http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.bbc.co.uk%2Fnews%2Fuk-politics-16656818&h=SAQFzE6zVAQHJSaJtzNUNHNky0zi9HAX-e74rdzCV-fHpWg

      Delete
    2. what is the expected cost of this new reform apposed to the present pay out, will this be a 'white elephant' at the expense of the disabled and dying?

      Delete
  96. You are one brave lady Sue.Be strong.WE WILL WIN.

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  97. Sue you are in all our thoughts and if there is such a thing as a connected mind then you should be feeling the positive waves about now (think donald sutherland in kelly heroes....'always with those negative waves moriiary' only positive ones....if you see what i mean)and that is a weird comment but you know what i mean.
    Thinking about this if there is any spots about the wrb and the spartacus report coming up on tv then they should be aware of the effects it has had on your health as soon as possible and any govt mouthpiece should be quizzed about that...Next up like i said momentun is key so the question is what next in the fight....one thing i did like was the comment about a mass chain up at no10 or parliment OR any newspaper hq...do it flash mob style and it gets more publicity and to make it worldwide inform the media as it happens not just in the uk but worldwide....people like max keiser on RT and Private Eye could be told in advance....Meanwhile sue thinking of you....

    ReplyDelete
  98. sarcboy

    Your wish might just come true on Saturday 28th January 11.30 Holborn

    Disabled people and UK Uncut join forces in "act of civil disobedience"

    http://www.ukuncut.org.uk/blog/message-from-the-invisible

    ReplyDelete
    Replies
    1. I will be having a look at that and i do strongly suggest we all do and formulate further action along the lines suggested.Imagine what impact a flash mob and i mean a bloody enormous one would have if we actually all chained up aand brought the traffic to a standstill in and around the entraces to the houses of parliment eh.. just like the film V we could all wear ids and fraud masks.....in the end we will have nothing to lose and dont we all not only have a right to protest and make waves.....once we start we cant stop...

      Delete
    2. I am not sure that stopping the traffic is the most effective form of protest. Irritation can drown out sympathy, and most people still don't have a clue what this is about. Countering the lies and misapprhensions seems more effective - and the injustices. Very, very noisily and frequently and persistently. Otherwise, it looks like a stunt.

      Delete
    3. I hate to say i agree.. I also think it's dangerous... have difficulty with boycotting olympics too.. not because i'm not terrified & angry but it won't help me personally to crash others dreams... even if effective... but I am a bit of a fool..
      Writing this Saturday night & it probably won't be seen now.. Days & nights pass...
      Sue is facing another night in Hospital & they can't speak to the Consultant who knows her best until Monday... Nita

      Delete
  99. What IDS meant to say was "they are not suffering....

    ENOUGH YET"

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  100. Leading figures in the disability movement say they could stop cooperating with the Department for Work and Pensions (DWP) if the government’​s welfare reform bill becomes law.

    Disabled people’​s organisations (DPOs) are becoming increasingly angry at the government’​s failure to listen to their views, despite its frequent references to how it is “​co-producin​g”​ its reforms with disabled people.

    This week’​s events in the House of Lords, with peers again approving plans to scrap dis[Tanni][Rosalie]... More...






    20 Jan 2012 - News - by John Pring

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  101. Not only am I incredibly grateful for all you've done, but this account of spoon debt crashing is going to be so valuable for me to explain to others why I am such a lightweight. You're great you are. And a big load of love and gratitude goes out to Kaliya, Spoonydoc and everyone else who has played such a key role in getting us heard.

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  102. To anyone in a similar condition, may I suggest part time work either as 5 days a week on shorter hours or as 2-3 full days. Working on sundays often brings in extra cash for the same time span.

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    Replies
    1. may i suggest you take some notice of what this is about mate and errr dont you think people will have thought of your solution .....otherwise ......or can someone else tell him

      Delete
  103. n November 2001 a conference assembled at Woodstock, near Oxford. Its subject was ‘Malingering and Illness Deception’. The topic was a familiar one to the insurance industry, but it was now becoming a major political issue as New Labour committed itself to reducing the 2.6 million who were claiming Incapacity Benefit (IB). Amongst the 39 participants was Malcolm Wicks, then Parliamentary Under Secretary of State for Work, and Mansel Aylward, his Chief Medical Officer at the Department of Work and Pensions (DWP). Fraud – which amounts to less than 0.4 per cent of IB claims – was not the issue. The experts and academics present were the theorists and ideologues of welfare to work. What linked many of them together, including Aylward, was their association with the giant US income protection company UnumProvident, represented at the conference by John LoCascio. The goal was the transformation of the welfare system. The cultural meaning of illness would be redefined; growing numbers of claimants would be declared capable of work and ‘motivated’ into jobs. A new work ethic would transform IB recipients into entrepreneurs helping themselves out of poverty and into self-reliance. Five years later these goals would take a tangible form in New Labour’s 2006 Welfare Reform Bill.'
    http://blacktrianglecampaign.org/2011/09/07/new-labour-the-market-state-and-the-end-of-welfare/

    This has been the end game of the welfare reform process since the beginning, UNUM were at the very first conference on 'malingering and illness perception' in Oxford as was N/L, White, Aylward, Wessely and co. you are right about the brazenesss of it all and Ussher hosting it, clearly they know there will be no real opposition to it, baffles me why the unions are not getting more involved..

    its a minority interest.....

    http://www.urban75.net/forums/threads/responsible-reform-amazing-document-by-disabled-people-please-circulate.286994/page-3

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    Replies
    1. More on UNUM,I also posted this on Guardian Comment is free, "What next for the Spartacans?":

      Unum report CMO 2007
      http://web.archive.org/web/20090503105339/http://www.unum.co.uk/NR/rdonlyres/C22C5183-95E7-468D-8D72-785867135C7F/0/CMOreport2007_UP1431.pdf

      Useful refs. to UNUM
      http://www.meassociation.org.uk/?s=UNUM

      These are useful, including UNUM/Chief Medical Officer links, Questions asked by Countess of Mar (wonderful woman, people with ME will know) re Govt./UNUM links, BBC questions raised, and recent Private Eye article.

      Consider setting up a Netvibes page to share useful links and newsfeeds?

      Delete
    2. http://www.demos.co.uk/blog/mutuallybeneficial

      http://demos.co.uk/events/of-mutual-benefit-launch

      "Of Mutual Benefit, a new Progressive Conservatism Project report on welfare reform."

      Delete
  104. Best wishes, I can't thank you enough. Xxx

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  105. Sue many many thanks for all your hard work on our behalf. I do hope that you recover a bit soon. And I know that you have probably been given this "tip" a thousand times but in case not try cutting glutten out of your diet for 6 months as it may help a little. I know someone who it did help a lot. Every little helps! Again I feel so endebted to you. So wish I could do something other than post comments and share articles etc. Susieb1211

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  106. I have been ill for 31 years. My wife works for a low wage and until recently we had no idea we could possibly claim DLA. I'm getting a claim in soon. We've been considerably worse off than Sally not working at all, paying all our rent and council tax and living on about £50 per week. I really did not know we were entitled to help. Why don't they tell you?

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  107. This comment has been removed by the author.

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  108. If I am ever forced to work though I and my own Dr/Consultant know I am not "Fit for work" and I will do the easiest job possible and do part time so I do the least amount of hours possible. And should I feel unable to work certain days because of my varying condition the employer will be unhappy and no doubt the DWP but hard luck.

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    Replies
    1. Funnily enough, it's not so much about you getting a job - it's about forcing you onto the lowest form of benefit so that you don't cost the precious taxpayer any money. The government would not care if you never got a job in reality. It's all about the money.

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    2. It has only ever been about the money and that is wrong but that goes with the selfishness of the people of the uk and in them voting in a way they do with labour just as bad

      If your a selfish person who plays no part in politics and votes just for self interest only then this is the sort of government you get

      We should have learned this by now as it's been going on for the past 30 odd years starting with Mrs thatcher

      Delete
  109. Many thanks for all the hard work you have done. Please concentrate on getting well and let others take the strain for the moment.

    I have been helping my daugher with her A level history where she is studying civil rights in the US. For some time I have felt that we have lacked a leader like Martin Luther King who can inspire, who can bring us together, who can help us stand up for our rights and who can change pubic opinion. That person for me is you and I thank you for your efforts.

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    1. That's true sue has well exceeded her status and has come out on top

      Delete
  110. http://www.campaignengineroom.org.uk/lobby-the-dwp-and-government-regarding-unfair-medical-assessments-for-esa

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    1. This is another petition worth signing. interestingly, if you go to the bottom of the page:

      "This is not a Labour Party campaign, it has been created by a user of Campaign Engine Room. As such it may not reflect Labour's official views or campaigns, which you can find here."

      I clicked on the 'here' and found that Labour has no views, am I missing something?

      Delete
    2. I've turned this into a link below to make it easier to access. It is well worth signing and needs much more support. People such as Sue and Kaliya are making themselves ill to protect our basic rights and Labour remain eerily silent. They could do with a bit of a nudge!

      petition to lobby against unfair ESA work capability assessments

      There is also a petition on the directgov site asking for work capability assessments to be looked at and made fairer.

      epetition ATOS assessments

      Again, woeful amount of signatures so far compared to Pats Petition. A high profile tweet or two would help? Please do sign and share it.

      Delete
  111. Well its my birthday today and a nice present would be for sue and kaliya to recover from thier present setbacks....and further to all this i have an idea about further use of the report....give a copy to all our doctors as i doubt if many of them have a bloody clue how this wrb is affecting our health and according to the one who is IDS we will NOT suffer as a result so the gps must be made aware (we could print it off ourselves or at least a synopsis and ask NAY demand that they read it as it is part of our fightback and in a very real sense part of OUR illness'....also we could give it to consultants and hospital doctors so they all SEE that if we are under threat then so are they as they health reforms are part and parcel of it .IT being the govt plans tp privatise the health service as thay have been doing by stealth and in fact this the same people who are responsible for the wholesale cash and assets grabbing of the nhs are also responsible for robbing us and in some cases ARE responsible for the deaths of the sick/disabled who have tragically been lost as a dorect result of this bloody assault on us all.Surely the health service providers must be on our side and if they are then THIER unions have to be too.....after all they are now shouting out against the nhs cuts so what do you all think

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    1. Hang in there eveyone, next week we have the debates on universal credit so we can expect joe blogs to be sitting up and taking more of an interest. While in theory £500p week per family seems loads, if you are living in London and your private rent is £450p week then how can a family live on £50? At present they have x amount for adult and Y for a child, if you are unluckly enough not to rent off council then there will huge gulfs between people. There will be even more pressue on housing as people realise its living in unsafe unsuitable housing so they can eat. Lets hope the Lords have their Weetabix.

      Delete
  112. Much love and best wishes to you, Sue. Thank you so much for all you have done for the rest of us xx

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  113. Sue from a fellow sufferer thank you from the bottom of my heart - please get well really soon xxx

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  114. Get well soon Sue. xxx

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    1. Hi

      I read this post two times.

      I like it so much, please try to keep posting.

      Let me introduce other material that may be good for our community.

      Source: Police lieutenant interview questions

      Best regards
      Henry

      Delete
  115. thanks for this post - wish you better.

    The use of 'arbeit macht frei' is rather distasteful and unnecessary. In fact, I find it offensive. I'm sure you did not intend to do so, so I would be grateful if you would remove it and update the article. Thank you.

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    1. The phrase Michael was used by IDS Sue has only used it because he has sue would never use any type of offensive phrase unless they was a need to highlight a concern

      The conservatives are well renowned to use this type of language and even dress up as Hitler etc so like you i find it offensive but it's not sue at fault here but the government and press for the their usage of this type of hatred towards the sick and disabled in the first place

      Delete
  116. I do appreciate you are Jewish and for what the Germans have done to your people in the past but this country and it's government is now turning it's back on the sick and disabled to an extent of how Hitler behaved against the Jews.

    in this case the sick and disabled being targeted for punishment and with none of knowing of what our destiny holds like the jews in the war we the sick and disabled live in fear to the such an extent people have committed suicide


    My verdict on both counts are that the conservatives and Hitler are as one with a very distorted way of thinking to such an extent in that they like to talk fear in to people and with much regret both being very successful

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  117. Michael - I'm sorry, no I won't. Arbeit Macht Frei literally means "Work makes you free". IDS has used exactly the same words.

    Perhaps before you judge, you would take a moment to read this : http://diaryofabenefitscrounger.blogspot.co.uk/2012/03/happy-mothers-day.html All of those things are happening to disabled people now.

    Then perhaps you will read this : http://diaryofabenefitscrounger.blogspot.co.uk/2012/01/spartacusreport-inspires-sermon.html Written by a leading Rabbi.

    It is indeed very, very, very, offensive. However, if we may never repeat warnings from the past, we risk repeating the mistakes.

    Did you know that concentration camps were actually tested on sick and disabled people? Did you know the Nazis gassed us first? If you open the "Useless eater" link on the first post I suggested, you will see a poster from 1930s Germany worded in exactly the same way as our own Daily Mail and Sun currently report "Scrounger" stories.

    I am half Jewish myself and believe very very strongly indeed that we must never forget, never ever let anyone forget. That way it can never happen again. If we censor comparisons, it just might.

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  118. Jason Pullen5 April 2012 11:08

    What can I do? ..due to injuries caused by the UK government I suffer from suicidal tendencies, due to the UK government I am certified unfit for work for life - they caused me to suffer severe head injury... My mother died early due to the additional stress caused by my symptoms from these injuries from these government murderers...
    Since she died, I sought a cheaper country, hence I am in Bulgaria, due to the murderers...
    I asked and begged and shouted and screamed...to no avail... What can I do?
    Attack the PM - to see a Judge to get this rectified? ..ok, I would like to become a martyr...who beat the PM senseless, ..as was done to me...and shaved his head and tattooed his ears pink and tied him naked in Downing Street, ..where the public could be charge perhaps..£10 a kick or punch, 59 pence for 1 slimy spit, and a whopping £12 to urinate on him - due to present laws thus must be done after 9.00pm, ..for the children's sake.
    What can I do? I applied for legal aid to sue them, but am refused as I am, because of them causing my injuries, abroad...
    What can I do?
    ..which people will join me in this government incited attack...to shave his head and tattoo his ears fluorescent pink and tie him naked in Downing street so the passing public can pay to validly punish him...to bring back the country we once knew as GREAT Britain, ..not Badlands...as it snow?
    What can I do?
    A list of names of victims of the Cameron conspiracy is requested on this site. Please send details.

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  119. I have come on this site for first time today and got a message to say that running this script could stop my computer from running - powers that be don't want this stuff read

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  120. Info is out of this world, I would bang to see more from your writers.
    no fax payday loans

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  121. Get well soon and thank you SO much ((hugs)) xx

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