Monday, 6 January 2014

Being "Sue Marsh"

You may have noticed I've been quiet lately. I decided to take all of Xmas off and spend time with my boys.

Actually, I'm not sure "decided" was the word. I had no choice really. I was heartsick. Demoralised. Exhausted. For 4 years I've given everything and more to this cause. I've nearly killed myself at least twice. I've neglected my kids and my home. I've spent money we didn't have, traipsing backwards and forwards to Westminster.

Family and friends asked me constantly "When will someone pay you for all this?" But I knew I was way more valuable to almost everyone unpaid and independent. Why would politicians pay me when I can say what they can't? Give media interviews they won't? Why would charities pay me when I can do their work for them for free? Leak stories they won't? Why would think tanks pay me, when they don't want to hear what I say? Why would unions pay me, I don't "work"?

Fellow campaigners asked me constantly "What do you WANT from this? When it's all over and things are better, what will be your reward?" I always gave the same answer - I don't want anything. I want to go to bed and sleep for a very long time. I want to focus on my children and my husband and my home and my health. If I could sustain work like this, I would never have claimed ESA. It mystified and infuriated some in equal measures. I wouldn't make Spartacus "official", wouldn't turn us into a think tank or ask for your money to fund us or indeed take money from anyone. If I did, how could I stay independent, say what really needed to be said?

And I watched, as though from a distance as the Westminster bubble worked it's magic. As those narrow rules and accepted truths restricted passion and fire. Oh, we all started out knowing what was wrong, what needed to change and how to change it. But like an exclusive club, derision and arrogance slowly eroded truth and if you want to "get on", well, you need to say the right things, don't you? Accept "there's no money" when money sloshes around Big Ben like muddy Thames water. Accept that fraud's a bigger problem than the evidence shows, that way you'll be more "credible". Accept the unacceptable, believe the unbelievable, all to keep the machine grinding on, impervious and inpenetrable. Don't rock the boat, don't embarrass the party, don't jeapordise the contracts.

In November, I found myself crawling through London traffic more than I was home. I spent £400 of my own money just before Xmas, trying with the conviction and determination I'd always shown, to speak truth to power, win hearts and minds, and ultimatley, save lives. I nearly killed myself, all over again, to finish a huge report into ESA, the Work Programme and how to implement a system that would work.

And all the while, think tanks with million pound budgets produced reports recommending further disability cuts without speaking to a single disabled person. Charities baulked at criticising the indefensible in case lucrative contracts were jeapordised. Politicians resisted engagement, often too arrogant to even acknowledge months of work, done by desperately sick people - why would they, with their own trails to blaze, their own names to make? The media, fettered and cowed by powerful critics, (with a few worthy exceptions) left stories unreported, corruption unchallenged, social crisis ignored.

And I battled on, charming and schmoozing and pleading and always always, providing the energy and impetus I didn't have, shouldn't have to find.

In the beginning, it was just me and a handful of others against the entire country. A public filled with prejudice, a media arrogantly sure they knew best, politicians too terrified of focus groups and the Daily Mail to do what, in their hearts they knew needed to be done.

But now, we are legion. The left wing press have woken up. Local papers run stories every day of another welfare related death. Even the Express and the Star and the Mail have occasionally opened their eyes to the incompetence of this DWP. But still people die, every day, more and more. Still the law turns against IDS and he ignores the judgements, still lives are ruined and hope is crushed. Still we allow ourselves to be lied to and cheated by those trusted with the greatest responsibility we can bestow - the responsibility to govern with justice and compassion.

So today, I say I've done all I can. Or have I done all I will? They all have the information we sweated blood and tears - quite literally - to produce. They've heard our arguments and have all the evidence they need to move forward. The truth is out there and today, there are thousands of us, shouting it from the rooftops. It can only be ignored for so long. We will see better days and only those with the power to change things can do so. Only they can choose to do the right thing. But four years of learning too much, knowing too many secrets makes me wonder if they will. Still, after four years, I have absolutely no idea if justice or expedience will win.

We will see better days. If I can promise you nothing else, the tide will turn, it always does. We get closer every day. Lies never hold forever, cruelty always destroys itself.

But from today, if people want to meet with me, they can pay me to come. If they need me, I'm here, just as I always have been. But I can't be the energy and the driving force any longer. I can't spur charities to act, politicians to care and media to do their job any more.

I will write. Wrtiing is what I've always done. I can do it from here, from the supportive embrace of my beanbag and my sick bowl. I'm good at it. I love it. I don't love the rest. In fact I've come to hate it. Hate most of them and their cowardice and ability to turn away. Hate those only in it for their own gain, for what they can "get" when the dust settles. This blog - for whatever reason - has power. I can say what I like. No-one can edit me or shut me off or make me into something I'm not. No-one can corrput me or use their wealth and arrogance to sneer at what they know in their hearts is right. I don't have to stay up, long into the night to write it, don't have to spend money I don't have to send links viral.

I'm a writer. I'm not a "disability camaigner" I never was. No-one chooses campaigning, it chooses you, because no-one else is brave enough to stand up and say "enough". I'm not superwoman, though I was prepared to be, to do what needed to be done. Now it is done. The truth is here, right here on this blog. If only for the history books, the truth can never be unsaid, never be unwritten.

I will write this blog, expose corruption - wherever I find it - with no loyalty to those undeserving of it. And eventually, I will write it all down in a book. If ever an ordinary Mum with a dodgy tummy lived an extraordinary 4 years, it must be me. I observed parliament and power and media and compassion up close and personal and what I learnt is astonishing. I think the public need to know just how our country functions - or fails to - and writing makes my heart soar. When I write, magic comes.

Let the researchers research and the ambitious climb their greasy poles and the corrupt spread their lies and the good fight for justice. I'll be here, reporting it faithfully. But I wasn't designed to live in the heart of it. I'm too idealistic, too distracted by what should be, not what will be.

It's not all bad. I've met some incredible souls. Astonishing spirits who've remained true for decades, deep in the heart of the snake pit. Journalists who live to uncover only truth, politicians who only care about justice and democracy, thinkers who simply think, unfettered by what they are told those thoughts should conclude. But even this Pollyanna has to conclude that on the whole, they are far too thin on the ground, overwhelmed by those who only really focus on the rewards.

I'm a writer and I will write. Those with power must use it as they will.


  1. Sue, I totally understand where you are coming from. You have been doing what others too should have done and at least taken some of the travelling, the expense and the rushing around from you. There are so many of us, some of the responsibilities should lay with us, after all, we all benefit from decisions won, decisions lost, decisions that make many open their eyes to us, the disabled.
    You are totally burn out - you have to step back now and let someone else share the burden. You cannot go on like this and now that you actually acknowledge that you hate parts of it, then that is the time to walk away from it.
    I want to thank you from the bottom of my heart for all that you have done for us. YOU took the fight to them, when WE should have been more involved. WE got lazy and let you do everything and that is our faults. Hopefully this will be a virtual kick up the backside for most of us and others will step into the breach, as we know that this year is going to be a hard one, as well as the final year that we can actually show this coalition just what we think of them!
    I'm glad that you will still be there and so glad that you will still write as much as before and will always be there to help anyone should they need it.
    Rest your body and your mind for a while and just write what you feel like writing. Enjoy your family, especially your children because before you know it, they'll be adults with families of their own. Your boys and your husband come first, embrace them and have happy fun times with them :)
    Take care
    Jay xx

  2. Thank you, for giving your time, money, & far more spoons than I can ever imagine.
    Thank you - only 2 words, but they need saying and mean so much........
    Sue you are a star:-)

  3. {sigh}

    It sucks us dry, it spends the money we should be spending on making our lives better, it eats at our hearts - and although thanks are wonderful, thanks and gratitude dont sustain us physically, and are such a tiny recompense for the mental effort and the sacrifices.

    So many times we have all had to stop, to pass on the baton, to be picked up from the lowest place of mental health, to re-gird our loins and to walk back into that battle...

    And it is a war, and it is a succession of battles - each one driving us down, drowning us with its demands.

    But we are made of cork - we will bob to the surface, or be cast up on a sunny beach to dry out and become rejuvenated.

    You're correct - the tide has to turn, but now its the time for those who are paid to step up and do what they are paid for.
    You have carried too many people for too long, covering up for their inadequacies, telling them what to say, nudging them and their careers along, whilst you got poorer and sicker.

    Some-one gave me some good advice a few days ago - be generous to others, but also be generous to yourself whilst you are doing it.

    You'll be back - at some point when pain eases and the rage rises, you'll be back.
    But in the meanwhile, fuck 'em - they dont deserve you. ;-)

  4. Sue, if I had money to spare, it would go to you. You have done so much good work, you have opened the eyes of many. It is such a pity that so many of the Selfservative MPs are brainwashed to believe the lies that their shepherds spout.

    There needs to be a revolution in this country, prospective MPs should be tested to prove they have open minds, and they should not be forced by the "Whips" to vote on party lines. This country was once Great Britain, it is now referred to, too often, as the United Kingdom instead, so the word Great is not needed.

    There was once a great Briton that said "... we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender". He also said "Never was so much owed by so many to so few".

    Those were said 70 odd years ago but they apply today to those of use suffering the slings and arrows of a corrupt and biased government and the latter quote from us who can't fight to those, like you, who do.

    If you have to give up, then thank you for all you have done. If you continue to fight, even from your beanbag, I am beside you in spirit, for you gave me the strength to appeal my DWP decisions.

    Be strong, be happy!

  5. Sue, we love you and we are so grateful for what you have done. Don't forget that your work (and that of all the other Spartaci) has had tangible results. For me, the major delays in implementing PIP stand out. That means hundreds of thousands of people have had more time with better support. That's a huge contribution to other people's lives, and it wouldn't have happened without Spartacus.

    Our system is indeed awful, but it does at least have room for people like you, and for all of us. Yes, we will lose money and get very frustrated if we do what you have done. But we are very unlikely to be locked up, tortured or killed. The irony is that you have had to risk death to remind us of the impact that just a few people can have in this country.

    The fact that we have a participatory democracy - albeit a corrupt and inefficient one - is something to be treasured and fought for. I wish more people realised this, and took the space that you have taken. I'm sorry that I can't put my energies fully into this fight; but you have inspired me to try to keep the integrity of the work I do in other places. And if you ever need anything at all from us, you know you have only to ask.

  6. Dear Sue,

    This is fantastically written and I applaud your sheer bravery and determination in the face of such group-think and callousness from those who are fortunate but don't want to share with those that need extra help. It could happen to any of us and indeed did when my son was first born, he needed two operations to save his life. In the USA or a developing country without good health infrastructure he would not have made it as we do not have much money, but the taxpayer funded NHS did its great work. I wonder if that makes me a scrounger in the eyes of the right wing press and Tories, hmm. I certainly play to campaign in the local and Euro elections, potentially with benefit issues in mind in addition to transport, environmental, and economic and social justice issues as a member of the Green Party and MSc qualified transport planner and part qualified accountant.

    You should not have had to suffer as much as you did and well done for having such great integrity and courage

  7. Thank you for everything you have done (and will continue to do through your 'extraordinary' writing gift) - from the bottom of my heart - Thank you! X

  8. Thank you Sue for everything you have done for us. I have read every one of your blogs and could only wish that I had the talent for writing that you have. Rest for a while now and spend time with your husband and boys.

  9. Well Said - I for one agree & believe it echoes the thoughts of many xxx

  10. You've been great, an inspiration, and reading this blog has taken me on a journey, opened my eyes, hurt my soul, brought hope, and also despair.

    And yes, anyone else with your abilities would be earning a six figure sum, you research, write, charm, give interviews, all for free.. And it's not fair. I've seen you take offence at accolades, but well, you've deserved them.

    After four years of this I'm surprised you have survived. But you're a tenacious woman, and I doubt you'll ever lay down in defeat in the face of injustice.

    I'm very glad I don't know the true secrets and the depths of skulduggery within the politics you've been up close to. What I know is enough, and don't think I could stomach the full truths.

    Take care..

  11. Sue you're always in my thoughts, I've worried about you, prayed for you and wished I could've left my home to help but it really was physically impossible. You MUST think of Dave and the boys first. Don't forget that. We're all terribly indebted to you. With love xxxxxx

  12. I wish I could reply to all these lovely comments one by one. But I'm very touched.
    I'm still going to be here, fighting just as hard - maybe harder, because I won't be censoring myself any more (be afraid politicians, be very afriad, lol)
    I'm just not going to do all the other stuff. I'm just so sick of doing other people's jobs for them, getting no thanks and no money.
    I'm certainly not leaving you all, I never could til his mess is all sorted out.
    I'll be standing right beside you all when we win. xxxx

    1. Sue as a warrior you should seek financial support from grant funding. Google Central Funding and form your own not for profit disability led organisation. This country needs 'doers' to rattle cages as you do!

  13. I can't really say anything that hasn't already been said excellently by your previous supporters except that I thank you more than you will ever know for giving me hope that a better life was possible. Until I stumbled across your blog, I thought I was almost alone in being sickened by what was being done in our names and that no one with the power to fight for change was out there batting for us. My god, you deserve all the rest and fun with your family that you can get. Watch out, here comes a big hug from me, my other half and our dog - hug hug hug. (But not so tight that it hurts!)

    I have tried to keep politics out of my art blog but before Christmas I could bear it no longer. When you have a moment, you might like to see 'Christmas Goodies & Baddies' in which I include a link to your blog;

    I'm looking forward to the book! Take great care.

    Sarah x

    PS I've been tweeting your posts far more often than you may have realised but stupidly kept adding the wrong twitter name and leaving out a 'y'! But I have spread the word as much as I could.

  14. Sue
    Thank you for being you and for all your eloquent writing which inspires others to join the fight.
    Yes, you've done work which should shame these so called paid experts, but you did it so much better because it came from experience and from your heart.

    Spend some more quality time with your family and you will know when it's time to get your blog head on again;-)

  15. Sue,

    You have done so much for us and we all understand that enough is enough. Your health and family are more important.

    I have done what I can, which isnt much as I cannot get out of the house on my own.

    I would like to believe the tide will turn and things will get better for us all. But when I heard Osbourne's announcement today all I felt was despair. I dont ask much of life, a home, my husband and my cat. But I know one more cut will be the killing blow, and our fragile house of cards will come tumbling down. What will happen to us then I really do not know!

    All the best Sue and take care of yourself.

  16. All the best to you Sue, I have often wondered how you kept going despite your health problems, and having to deal with some very sleazy types in Westminster, I'm sure. If only all MP's had your integrity, we wouldn't be in the mess we are now.
    Thank you so much, from the bottom of my heart for all you've done and thanks too to all the 'background' Spartaci who I know worked so hard also.
    Wishing you a good rest (for a while, at least ;)) and enjoy your family. I'm already looking forward to your next blog - uncensored - they'd better watch out!
    All the best to you xxx

  17. I'm impressed you've lasted as long as you have. While I'm not in the UK, I do appreciate what you have done as it's brought wider attention to the problems (even people in the US are now getting aware what's happening).

    Do you have any people that you'll be able to refer requests to speak/non-paid public writing and similar? It just struck me that if you have names you can suggest, it makes it harder for the requester to claim they couldn't find someone. I am sure there are people out there who have the ability, but haven't had the publicity to even get asked. The more people visible speaking on the issues, the better :)

  18. You have been magnificent none could have more, a saint comes to mind.

  19. sue take it from me no one could have done any better if i had been an mp you would not even have to have done anything at all as that would have been my job

    what you have exposed in what i have always known in that mp's are pretty useless at everything they cant stand the thought of being detached and work just for the public's benefit they always have to put their party views first along with their own selfish views

    for myself if the government threatens my life then i will just claim political asylum in another country and the ways things are that may have to be the choice for many its either that or die at home

    you take care IDS and co can still fail god still has the upper hand at the end of the day yes it is a long shot but things can and do happen to dictators history is littered with them in their graves

    we here will stand to it's all over together and if we fail then as in life we will all die together unless as a group we move abroad somewhere

    when you fight hard in life you wake up one morning hating your country and for many that day has passed none of us can win as the damage has been done already all we can hope for is that a deep depression doesn't come over us as if that were to happen then that's game up

  20. Thank you for all you have done and all you will do, but as I've always said - take care of you first. I don't have lots of money as most of us here, but could we not donate whatever we can to help you with your financial loss? I'm sure we could make a difference collectively, it all adds up. Set up one of those accounts so we can donate Sue. :-) xxx

  21. Hi Sue. What you have done for so many people can't be rewarded by money. Your help is embedded in the souls of those you care for, a rich fabric of love that will strengthen their bodies, so they may overcome any challenges they may encounter. You are a real life ANGEL. God bless and i hope you find fulfilling rewards in writing books that i am certain will be a great read. Thanks and well done Sue. X

  22. I apologise in advance for saying this but I think you're letting people down by withdrawing to the comfort zone of 'writing'. Is that fair? no, of course it isn't fair, and you'd have every right to be indignant about such a claim, so let me elucidate.

    No one said campaigning was easy, no one said victory would be easy, no one said you wouldn't have to neglect people you love to campaign, no one said your own health wouldn't suffer, but you did it anyway, selflessly, tirelessly, courageously, lovingly. And in so doing you built a profile and a persona and a titan among Westminster's ants. How much of it is the real you and how much a felicitous mask to enable your simultaneous engagement with the powerless and the powerful is irrelevant, it's the same dilemma that faces any public campaigner.

    So why the criticism? because whether you like it or not a lot of extremely vulnerable people now look to you for an ounce hope amongst the tons of despair that bear down on them everyday, and I don't think a column or two can fulfil those hopes in the way a public profile can.

    Okay, I admit it, the bottom line is your have every right to think of your own health and your own family, and should you do so we'll all remain in your debt and admiring of the your achievements against such overwhelming odds. But think about what I've said.

    We love you. I mean it.

  23. Sod Bloody Scamerons Hairdresser..If ANYONE deserves a MBE Sue,,,its YOU!!!

    To echo another famous speech..though yours would come from the heart:-)

    ‘Where there is discord, may I bring harmony. Where there is error, may I bring truth. Where there is doubt, may I bring faith. And where there is despair, may I bring hope

    You did all that Sue..and MORE!

    Bless hon...x

  24. Sue, the problem we all face is ignorance, none of us should have to suffer the indignity of grovelling for an existence but that is where the politicians and the elite want us.

    The cycle of debt is Banker induced, because if everybody was well paid there would be no need for Bank Loans and their world would shrink, so they need to keep us poor to maintain the debt bubble they have created.

    This video explains that money is there for any purpose government chooses, except they choose not to.

    Modern Money: the way a sovereign currency works.

    Ultimately successive governments have lied to us about national debt and the need to balance the books in order to fund our public services and could cure unemployment over night.

    The problem is the politicians are not working for us but the Bankers.

    If you have any doubts about what you have seen on the You Tube video, firstly all the speakers are university academics speaking to economics students at an American university, and then ask yourself, how did give money to prop up the bankrupt Banks when we had no money to do it, as they point out in the video, the politicians chose to do it, which they choose not to for our public services.

    This in fact is what people do not understand, because they believe the lying politicians.

  25. Sue, you and your writing have meant more to me than you'll ever know. Your blog helped save me from despair and gave me the strength to fight this system and not let fear overcome me.
    I think you've made absolutely the right decision to step back from meetings. Like everyone else, I can't thank you enough for ploughing all your strength, talent and jaw-dropping determination into our cause.

  26. i am sure sue needs a break but I'm sure also she will like most of us here fight on as she like all of us will have to just to keep a roof over our heads

    The long-term sick and disabled have no choice but to fight on if we do not we will end up dead it is as simple as that at the end of the day irrespective of who is in government

  27. Hi Sue and anyone who can help. Skint as hell and need a copy of Benefits & Work guide for completing the ESA50 you can EMAIL ME AT ...GOT 3 WEEKS! :( thanks very much Mara


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    Hello to every one out here,I am Latisha Allen,From Wisconsin, USA.I will start by saying to all that have experience heart break and also cant do with out there lover should please stop here and read up my story, So as you will know how to go solving or getting your ex back from this spell caster..AND AGAIN I WILL WANT TO ALSO TELL ALL THAT THIS SPELL CASTER I WILL WANT TO TELL THE WHOLE WORLD ABOUT IS HARMLESS AND DO NOT HAVE ANY SIDE EFFECT, BUT TO RESTORE AND GIVE YOU BACK WHAT YOU DESERVE, COS WHEN I MEET WITH THIS SPELL CASTER THAT WAS INTRODUCED TO ME BY THE WIFE OF MY BOSS IN MY WORKING PLACE, HE MADE IT CLEAR THAT HE CAN CAST SPELL ON SO MANY OTHER PROBLEMS EXCEPT IN GETTING YOUR EX OR MAKING YOUR LOVER TO LOVE YOU MORE THAT WILL SUITE YOU. Last year December, My lover was cheating on me and was not also give me the attention that a man should give to a woman,And really that was troubling my mind and tearing my heart apart to the extent that i was not concentrating in the office the way i use to before the break up by my lover.And before that incident,I always see how my boss use to love his wife so much. I was binging to think that i was not doing the right thing to him that will make him love me forever,So i really gathered my courage and went to my boss wife office to ask her the secret that made her husband love her so dearly,In the first place she refused in telling me,She asked me why i am asking her such a question,That if is it not normal for every man to love his wife.I told her the reason that made me ask her about this question,That my lover started cheating on me lately,When i knelt down before her for her to see my seriousness in this issue that i went to ask her,She opened up to me by telling me that i should not tell anybody about what she want to tell me,The wife to my boss started to say to me that she used a very powerful spell on his husband to love her,And the spell that she used is harmless, But the spell is just to make him love her and never to look for any other woman except her. I QUICKLY ASK HER HOW DID SHE GET TO KNOW THIS GREAT,POWER,DURABLE AND PERFECT WORK SPELL CASTER,she said that a friend of hers also introduce her to him. Then i also ask her how i can meet with this spell caster.SHE SAID EVERYTHING TO ME,THAT THE NAME OF THIS SPELL CASTER IS Dr BRAVE.My next question to her was how can i get this wonderful spell caster,She said she is going to give me the email of the spell caster for me to contact him for my problem,Really she gave to me this spell caster email and i contacted him and explained all to him,And after every thing that needed to be done by the spell caster, In the next two days, My lover that hated me so much came to house begging for forgiveness and i was so glad that i have finally gotten my heart desire..I was so grateful to this spell caster for what he has done for my life.. So i made a promise to him that i will always continue telling the world about his wonderful work towards me and also to other that came to you before and also the people that will also get to you from my story that i narrated online now..I will want to say to the entire world that you should not cry over noting again, That there is a great man that has been helping individuals to restore there Joy and smile in there faces !! The direct email to get this man is CONTACT HIM NOW THE BETTER FOR YOU TO GET QUICK SOLUTION TO ALL YOUR PROBLEMS...

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