Friday, 23 December 2011

God Bless us Every One!

As I frantically try to tie up as many loose ends as possible before tomorrow, I couldn't log off for Xmas (actually Dave is going to lock my computer in a drawer for 3 days!!) without a few seasonal thoughts.

The last two weeks have been mind-blowing. As soon as I launched the appeal fund for DLA research, it was as though the disabled and spoonie community went into overdrive. Were we all waiting for a focus? Did we all just decide that fighting was the only option left to us?

When my DLA rejection post went viral, it was as though the universe conspired to give our campaign a boost just when we needed it most.

We raised the first £2000 almost immediately. When I checked last, we were over £2,500 and donations are still coming in. The generosity, trust and optimism you are showing is overwhelming.

Over 200 people have volunteered to be "Constituency Reps" and send the research to their MP on the release date.

Charities, media and even politicians have rushed to help behind the scenes - the response has surprised no-one more than me.

On twitter, people are springing up with their own ideas for the New Year, ways to maximise the impact of the research or get our vital messages to peers before the House of Lords return to debate the welfare reform bill in the New Year.

Lib Dem peers have received literally hundreds of messages about Time Limiting ESA.

The change in attitudes and confidence is remarkable. Something seems to have convinced you all that we CAN do this, and the more of us that believe it, the more chance there is of it coming true.

It occurs to me that this IS the Big Society Dave. This IS a Movement for Change Labour!! Yet how ironic that none of you engage with it? Clearly this is not the kind of participation you were hoping for.
We won't go away. We won't all drift off once you use your privileges to force your incoherent bill through parliament.

We've learnt that we can DO this. We can do it on our own. We can build support and friendships, we can help each other out. We can network and every day that network grows. Every day more people learn about our fight and every day they join our campaign.

If we can do this in just over a year, can you imagine, Dave, how annoying we will be by next Christmas? Can you imagine just what a PR nightmare we will become? Is it not better to just engage with us now, before it's too late? Before you take a step you cannot turn back from? Before you introduce policies that are going to see a steady stream of cancer patients at soup kitchens and wheelchair users begging on the street? Does it really have to be this hard?

We are the Big Society. We are the Good society. We might even be Alarm Clock Britain and the Squeezed Middle - it really is time you considered that. We are a constituency of millions, we are intelligent and capable. It's time you considered that too.

So guys, pour a glass of eggnog, pull up an opiate and give yourselves the most enormous gold star!!

As The Broken of Britain so eloquently remind us - "Alone we Whisper, Together we Shout."

Have the happiest, most joyous of Christmases and every single one of us has the gift of knowing that we're not alone any more.

38 comments:

  1. Excellent, Sue - your "letter to Dave" should appear in every newspaper and be read out on every TV/radio bulletin. Thank you for all your hard work! x

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  2. God bless you and the stand that you have taken. Christmas angels all around - hope you can take a restorative break. We'll be with you for the long haul. xxx

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  3. Thank you so much for all you have done, and all those also involved in the fight for bedefits. Meerry christmas Sue...sorry for mistakes keyboard and fingers knackered ...Sue.

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  4. We reject also the whole idea of "experts" and professionals holding forth on how we should accept our disabilities, or giving learned lectures about the "psychology" of disablement. We already know what it feels like to be poor, isolated, segregated, done good to, stared at, and talked down to - far better than any able-bodied expert. We as a Union are not interested in descriptions of how awful it is to be disabled. What we are interested in, are ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top our physical impairments by the way this society is organised to exclude us. In our view, it is only the actual impairment which we must accept; the additional and totally unnecessary problems caused by the way we are treated are essentially to be overcome and not accepted. We look forward to the day when the army of "experts" on our social and psychological problems can find more productive work.

    Extract from UPIAS 195 SOMETHING

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  5. I second what Marilyn said and wish you and yours a Happy Xmas and a better New Year xx

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  6. great comment anon(1601)
    Great work also Sue

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  7. Have a very merry Christmas! You have done amazing work this year!

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  8. Sue.Have a great christmas with your family and many many thanks for all you have and are doing for us all.And to all of us YES we can fight and now it seems we have decided that there is nothing to lose then on we go.A new year dawns.Happy Christmas everyone....

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  9. …………(¯`O´¯)
    …………*./ | \ .*
    …………..*♫*.
    ………, • '*♥* ' • ,
    ……. '*• ♫♫♫•*'
    ….. ' *, • '♫ ' • ,* '
    ….' * • ♫*♥*♫• * '
    … * , • Merry' • , * '
    .* ' •♫♫*♥*♫♫ • ' * '
    …' ' • Christmas . • ' ' '
    ' ' • ♫♫♫*♥*♫♫♫• * ' '
    …………..x♥x
    …………….♥

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  10. Well done you and your team Tis good to know we are all fighting together, spending another Xmas only and greatful for carer visits so at least will get a turkey sandwich : this time next year I may be "fit for work" have no dla and council may feel they can swipe me off care package. We aren't fighting for riches or luxury but the ability to stay alive warm and fed in our own homes. I shall be toasting all fellow team mates all have a rest and see you back at the front line 2012 x

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  11. Look at my beautiful Xmas tree!!! I love it.

    How do you DO that?

    Ahhhhh, I'm feeling all glowy and warm. Must be the wine.....

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  12. What a wonderful inspiring post Sue. Thanks for all you are doing and very Merry Christmas.

    Virginiax

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  13. Warmest wishes everyone for joy, peace, and happiness this holiday season and throughout the coming year

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  14. [QUOTE]God Bless us Every One!
    As I frantically try to tie up as many loose ends as possible before tomorrow, I couldn't log off for Xmas (actually Dave is going to lock my computer in a drawer for 3 days!!) without a few seasonal thoughts.

    The last two weeks have been mind-blowing. As soon as I launched the appeal fund for DLA research, it was as though the disabled and spoonie community went into overdrive. Were we all waiting for a focus? Did we all just decide that fighting was the only option left to us?

    When my DLA rejection post went viral, it was as though the universe conspired to give our campaign a boost just when we needed it most.

    We raised the first £2000 almost immediately. When I checked last, we were over £2,500 and donations are still coming in. The generosity, trust and optimism you are showing is overwhelming.

    Over 200 people have volunteered to be "Constituency Reps" and send the research to their MP on the release date.

    Charities, media and even politicians have rushed to help behind the scenes - the response has surprised no-one more than me.

    On twitter, people are springing up with their own ideas for the New Year, ways to maximise the impact of the research or get our vital messages to peers before the House of Lords return to debate the welfare reform bill in the New Year.

    Lib Dem peers have received literally hundreds of messages about Time Limiting ESA.

    The change in attitudes and confidence is remarkable. Something seems to have convinced you all that we CAN do this, and the more of us that believe it, the more chance there is of it coming true.

    It occurs to me that this IS the Big Society Dave. This IS a Movement for Change Labour!! Yet how ironic that none of you engage with it? Clearly this is not the kind of participation you were hoping for.
    We won't go away. We won't all drift off once you use your privileges to force your incoherent bill through parliament.

    We've learnt that we can DO this. We can do it on our own. We can build support and friendships, we can help each other out. We can network and every day that network grows. Every day more people learn about our fight and every day they join our campaign.

    If we can do this in just over a year, can you imagine, Dave, how annoying we will be by next Christmas? Can you imagine just what a PR nightmare we will become? Is it not better to just engage with us now, before it's too late? Before you take a step you cannot turn back from? Before you introduce policies that are going to see a steady stream of cancer patients at soup kitchens and wheelchair users begging on the street? Does it really have to be this hard?

    We are the Big Society. We are the Good society. We might even be Alarm Clock Britain and the Squeezed Middle - it really is time you considered that. We are a constituency of millions, we are intelligent and capable. It's time you considered that too.

    So guys, pour a glass of eggnog, pull up an opiate and give yourselves the most enormous gold star!!

    As The Broken of Britain so eloquently remind us - "Alone we Whisper, Together we Shout."

    Have the happiest, most joyous of Christmases and every single one of us has the gift of knowing that we're not alone any more.[/QUOTE]

    Sue your a true leader and that's what this country desperately needs but cant have your inspiration to others is vast i have only ever known one person with such leadership qualities in my lifetime and that was lord Richardson the governor of the bank of England from 1974 to 1984 one word from him on banking and the whole of Europe and beyond would be able to fall into line knowing that his leadership was solid even the middle east were fully behind him such very rare qualities to find these days and impossible in governments across the world sad to say

    Have a lovely xmas sue with your family and hopefully some better health in the new year of which all of us here could do with

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  15. More power to you, and by extension, those in a similar position to you, and anyone disadvantaged in such a manner by the ideological policies of the present government. My very best wishes to you and yours.

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  16. Thank you Sue for everything and a very Merry Christmas to you and yours xx

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  17. Thanks for all your effort Sue.I have put link to appeal fund in as many of my forum sigs as possible.

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  18. Merry Christmas to you Sue and everyone who is helping you. So many thanks for what you do and more power to your elbow in the new year! xxx
    Merry Christmas to all the regulars (and irregulars ;-)) whose posts of sense, wisdom and courage make me feel proud to be part of the disability/spoonie fightback.
    God bless xxx

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  19. Have a good three days away from the computer Sue and enjoy Christmas at home, this year :)

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  20. Marianne Hepple25 December 2011 01:44

    You are an inspiration Sue. Have the best Christmas you can possibly have. 2012 will be the year the people fight back all around the world.

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  21. Not sure that demanding State benefits is quite what is meant by 'the Big Society', but good luck to you.

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  22. Merry Christmas all. Won't be so great for me, as the dodgy Atos doctor failed me thus until I hear about my appeal date/assessment rate money coming through, I'm pretty much screwed for money.

    Not great going into Christmas worrying how a vital part of keeping yourself alive has been removed, just I hate the hassle and sleepless nights this is causing me, I wish they hadn't introduced ESA/Atos meh

    - Matt

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  23. Merry Christmas Sue, and to everyone standing shoulder to shoulder with us in this dark time.

    Horrible Christmas to everyone trying to rob us of our humanity. May it be shite.

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  24. Make that £2,700 and counting, let's hope others surprise you before you're back online...

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  25. Cath Margos - If "demanding" those state benefits saves the state money elsewhere, then surely that is the very definition of Big Society??

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  26. "demanding". Would that be in the same way that Oliver Twist demanded more food?

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  27. @ Sue Marsh - does it save the State money elsewhere?

    @ Loopy - only if you're starving. Are you?

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  28. Without benefits at their current level? yes. Very simply.

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  29. This comment has been removed by the author.

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  30. Does it save the state money? Erm...yes it does; actually my caring for my son saves the State a fortune. It means that they don't have to open up hospitals or care homes to care for either myself or my son. It means I save the state over £100,000 a year for my son's care (which is how much it would cost to put him into residential care and education). The fact that somehow the government seems to think an acceptable substitute for raising a child on £100,000 a year is giving me £2500 (and that money may actually be cut)...I think I've a right to demand there's something wrong here.

    If we're starving? Yes, actually...if these cuts hit, that's exactly what we'll do. We're not a union demanding a pay rise, we're not bemoaning the loss of our second car or our holiday home in the country. I'm more concerned with having the money to wash my and my son's clothes when my incontinence kicks in or my son wets his bed, to have respite care when I have to go to hospital and there's no one to tend my son, to quit getting told "well, cuts, you know" when I fight for my son's education and try and actually GET him one so he may miraculously be able to hold down a job (that whole 'future taxpayer' thing)...then I'll bloody well demand. Gods knows no one else can be arsed until they're suddenly disabled themselves.

    Don't tell me any citizen in the UK has never "demanded" anything. Usually that is considered a Fundamental Right of the Taxpayer according to most news articles floating around. There's this weird belief that as a disabled person I don't actually pay taxes, and as I theoretically don't pay taxes I have no right to say owt. It just seems that those of us on the bottom rung are the ones who should just be tugging our forelocks and doffing our caps for the sake of someone else's sense of "Oh, look, I helped a cripple." Which I do believe is the whole point of the title of this blog. "God bless us every one" indeed.

    So how would the modern tale spin out? I could see Maggie Thatcher appear with papier mache chains around her body, mostly comprised of every grim word she ever used and the Daily Mail tabloids, trying to tell the current Coalition "Repent! See what my words have done!" The ghost come to visit: The Ghost of How Life Was Before We Had The Welfare State - an old woman of 60 who looked 80 after the childbearing was done, with the children and grandchildren who died before their first birthday trailing behind her. I am the Ghost of How Life Is Now - a hollow eyed person still bleeding from their wrists and with the noose round their necks as they hold the DLA letter saying their benefits were cut - the "most vulnerable" who weren't protected despite all the assurances. The Ghost Of Your Future - living through the agony of the car crash that breaks your neck, or the first bits of hell that heralds dementia; watching your friends abandon you as they can no longer relate to you, your career disappearing, and the forms, endless forms you have to fill in, the reviling on the street, the hate, the disgust...the fight for even a scrap, but rather than the grave, you're told "but you've still got a long life ahead of you!" as if even more years was a gift, rather than a sentence.

    And yet, we're still waiting for Scrooge to give a change of heart, to be able to say "Bless us, every one!"

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  31. Well, yes Cath, it does.

    You see, when they closed all the institutions and introduced "Care in the Community" They designed DLA - Disability Living Allowance.

    So for a hundred quid a month, maybe 200 or 300, a person could live independently, saving the state thousands of £s a WEEK.

    So if you try to then take the DLA away too, it doesn't take a genius to see where the disaster is looming.

    DLA saves the country billions. It helps millions of disabled people to work too, take it away and they simply can't get there.

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  32. Oya's daughter - Wonderful comment. I love the ghosts examples you used. Very powerful.

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  33. I do my best writing when I'm utterly pissed off. This probably isn't good for my health but I may make the imagery into a horribly-easy-to-dismiss-as-just-an-anecdote sort of blog post.

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  34. DLA remains a vastly under-claimed benefit; there is £200 million over-spend when you only count those who are already claimants but receiving an award lower than they should be getting according the the 2004/05 National Benefit Review of DLA.

    It was known before then though and this terrified politicians looking for excuses to attack claimants and that same review did precisely that by using the same method to look for over-payments, but in doing so did not correct for the differences between those who are under-paid and those who are over-paid.

    Those big differences being that no one who is found to have been under-paid appeals against the decision to give them more money, where those who disagree with a decision that puts them on a lower award of kicks them off DLA entirely will. This is important because of two DWP decision makers disagree on about one in ten cases, then there is a huge uncorrected human error in the sampling. The National Benefit Review did not account for it and delivered the satisfying but false £600 million over-spend that Maria Miller has been using everywhere for the last two months since she actually got round to reading that report.

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  35. People who don't rely on benefits or the support offered by social services don't realise that these things are a necessity, not a luxury.

    They are not things I rely on gladly, although I am glad and thankful that they are there, in the same way that I am glad and thankful that our country has a good health system, fire service, police, etc... These are things you never want to use, but you want them to be there in the unhappy event you need them.

    Right now benefits and social services support are under threat. It is not "demanding" to ask that they remain. Not even improve, but remain.

    Without them, I would be at risk of dying. This is not an exaggeration. I am in the critical band for social services. To be in this band you have to be assessed as at risk of severe injury or death if care is withdrawn or not given.

    I am totally incapable of working through ill health. This is not something I can change and will not miraculously get better. This illness is incurable. Without benefits at the current level (assessed as "the minimum amount needed to live on") I WILL starve and I WILL be homeless unless I throw myself at the mercy of charities or I am lucky enough to have family/friends who can help.

    Many are in my situation. Anyone could find themselves in my situation at the drop of a hat. If they do, they mustn't find that all support has gone because no one fought for it.

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  36. I'm stunned by Cath Margos feeling the need to ask if people are at risk of starving. What did you think this was about, Cath? Seriously. Disabled people whinging? Disabled people having a collective tantrum like a toddler in a supermarket? If you want to die and are happy at the prospect of your own death sometime in the future, even if it's painful, then good luck to you, but that's a very unusual mindset. Most of us are pissed off that ourselves or others are having to plan our own deaths in the event of benefit removal to ensure that they are as quick and painless as possible. We don't like that.

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  37. Hi, I hope this is a sensible place to comment. I'm very happy to be a constituency rep for Cambridge, what is more I actually know and I think am liked by our MP so I hope that I might carry some weight of my own not that he doesn't take everyone seriously. In guiding how much more (I've already donated) I donate, how much are you still in need of money if that's not a strange question.

    I'd be keen to help in other ways but I'm not sure how much I can given I'm pretty house bound and limited on spoons and have important campaigns and community care of my own but I'll help out any way I can.

    Nargh, openid is borked, you can get me at rowan@ the web address I've provided.

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