Tuesday 4 February 2014

The Big Benefits Row

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As many of you may know by now, last night was the Big Benefits Row on Channel 5. "Roll up! Roll up for the spectacliar sight! Real life poor people for your viewing delight!" 

I was contacted by the show's producers early. Would I be on a panel to discuss welfare changes? They assured me it would be balanced and to their credit, I do think they worked very hard to make sure a range of views were represented in a way that shows like Benefit Street and On Benefits and Proud neglected entirely. Had I been a beleaguered austerity-junkie audience person, I think I would have had a rare taste of how it feels to find oneself outnumbered.

As the days passed before the show, I got that sneaking feeling I was being downgraded. Perhaps I should explain. I've done a lot of media now. Newsnight, BBC News, Sky, Radio 4, Radio 5 Live, LBC and many, many more. The pattern is almost always the same. I've learnt never to tweet about bookings until I'm in the actual studio getting miked up. For every 5 approaches, I suppose one might actually come to something.

Initially, the plan is always for real a debate, or a full feature on welfare cuts or a hard hitting doumentary. As the producers of the shows try to get guests to appear to discuss disability welfare cuts in any serious kind of way, they realise the task is almost impossible.

For some time now, the DWP and No.10 have refused to put anyone up against me. (and presumably other campaigners) at all. At first, 3 (all BBC) went ahead, but the various researchers were all genuinely shocked at the lack of government engagement. All said they'd never known such blanket refusals to debate an issue.

Perhaps more sinisterly, they were shocked that invariably the DWP refused to take part unless the stories were edited their way. Iain Duncan-Smith has written repeatedly and furiously to the BBC about their lack of balance in reporting welfare issues. Anyone who follows the debate with even a flutter of fleeting interest will know just how ironic that is. If ever there has been an issue so poorly reported, with so much ignorance and so many lies, the current "welfare" debate must be it. 

But it's clever isn't it? Refuse to debate at all and generally it will mean there can be no debate. You can shut down any and all opposition simply by saying nothing at all.

Anyway, I digress.

Even if a show does get made, invariably it gets watered down to the point of, well, no point at all really. An hour becomes half, which then becomes 15 minutes, which then becomes a 3 minute bulletin. A coalition MP becomes a "governmnet spokesperson" which then becomes an intern, which then ends almost without fail, with a member of the Taxpayers Alliance. And it's just too easy to make them look silly, they do most of the work themselves.

I've been edited to make me look like a "shirker", I've hauled my crohn's riddled butt all the way to London only to be told "Oh, sorry, it's not happening now, did no-one let you know?" I've been booked for shows under the pretence that a particular subject-du-jour is the subject only to be ambushed scrounger bashing vitriol the moment we go live. (Yes Nick Ferrari, I do mean you.) I've been made to walk to locations, despite pointing out repeatedly that I can't walk far or stand for very long. "If you could just manage....."

I've uncovered vast and shocking welfare stories only to find I can't get them published anywhere. Bumped for Egypt. Bumped for Syria. Bumped for chickens in cat outfits. (That last one's not even sarcasm!?!) Repeatedly I hear in a loop "But welfare isn't a story."

Well no, why would it be? The current social security cuts are stripping away an eye-watering £28 BILLION from the support and services sick and disabled people rely on just to get through the day. That's a full FIFTH of the entire deficit reduction plan falling on those who often have no voice to defend themselves. One pound in every five!!!

In all, I've found dealing with the media to be the most revealing and frustrating part of the whole "being-a-campaigner" thingy. You have to get REALLY tough REALLY quickly and be prepared for an infinite prism of disappointments and frustration.

And so I bumped down those now familiar media steps last week with depressing familiarity.

First I would be on the panel. Then the panel became the front row with assurances all of the main invitees would be sitting there with me and all would get a fair say. I was an "invited guest" and "disabled people's voices would be heard blah-blah-diddly-blah". And so yet another hour became a 15 minute section of the show from which I might get to throw in a 3 minute soundbite or two. This in turn became "You'll get a chance to speak from the audience" which fizzled out into "Ah, wheelchair issues mean you can't sit here/there/anywhere so we'll tuck you in that dark the corner out of the way."

As I said, I've been around the media block a few times now. 4 years of blogging and campaigning is actually 56 in human years. I was emphatic with the producers from the start that I wouldn't waste my energy spoons getting to London for nothing. They assured me repeatedly that that wouldn't be the case.

As it happened, I also had a hospital appointment in London yesterday at 3pm. As only us sick people can really know, that is traumatic enough in itself. It takes 3 hours for Dave to drive me to central London and 3 hours to get home. Ordinarily, that alone would exhaust me for days after the actual event but instead, yesterday, I chose to wait 6 HOURS for the Big Benefits Row to start. By 8pm, every one of my loved-ones know not to phone me or expect intelligent reponses. Waiting up to do a show that starts at 9pm is significant in my world.

Sickies like me will also know just how much it costs in emotional energy to even contemplate a day like I had planned for yesterday. The only way I can get through them is on adrenaline. Bodies like mine, so used to ignoring physical crisis signals, compensate the only way they know how. As the adrenaline floods through your body it makes you feel shaky and sick. I can't eat anything significant, I get a bit hyper. That good old fight or flight response recalls echos of demands from its genetic history. I wouldn't even think about eating anything significant before a show like The Big Benefits Row anyway, just in case it causes some involuntary vomit to land on someone's shoes. (*Other bodily fluids also available by request))

But our trials had barely started. Mik Scarlet (Writer for Huffington post and the Independent) Jack Monroe (working for Sainsbury's, ITN to name just a couple). Lisa Egan (Sky contact for disability related welfare issues & an articulate, intelligent blogger.) and I (Guardian, BBC & this little bloggy-woggy) all met up beforehand to get something to eat and so arrived at the studio together.

Having only needed to use a wheelchair for just under a year, the reality of disabled access has shocked and appalled me too. Did you know for instance that most trains only have ONE disabled space and so can only take one wheelchair user? No, I had no idea either. And did you know that you can't get in to most restaurants and shops despite access being a legal responsibility? Nope, nor me. Or that supermaket aisles often make it impossible to get around a shop independently? Or that you can't use almost any of the London Underground?I didn't know any of that stuff

When we got to the Channel 5 studio an epic confuddle broke out. As I've also learnt, they often do when some people are faced with several people on wheels all at once. They could only take 3 wheelchairs. 4 would apparently tip the building over into a dangerous and unforgivable fire risk. They couldn't evacuate four of us!

I'd been trying not to cry for about two hours by this point and the only way we were all going to get in was if I left my wheelchair in the foyer and hobbled down to the basement studio. I was the only one who could walk at all.

Once on the set, even bigger confuddlement broke out. "You can't put them here, they're in the way of the cameraman" (I thought the "them" was a nice little dehumanizing detail eh?) "You can't let them sit at the front, it makes them look too important" (I precis) etc etc.  After at least 10 minutes of this infathomable conundrum, Mik shouted to the audience who were now in their seats ready for the show to begin. "Get a job they say?? Are you watching this? Most of the time, we can't even get a bloody seat!"

I noted with great irony that the panellists had to sit on a raised platform anyway, so even if they had kept a disabled person on the panel, it's unlikely they could have overcome the first and simplest of barriers and actually got up on to the stage.

Already brimming with brittle frustration, adding Edwina Curry and Katie Hopkins into the mix with no off button took every ounce of professionalism I had to survive without actually combusting.

Surprisingly, I thought the debate was very good. If anything, it was biased in our favour for once. Matthew Wright held Hopkins and Currie to account frequently and the range of people who did get to speak were varied. I think it surprised everyone when Rachael Johnson, (Boris' sister and editor of The Lady) and Sam Delaney, (editor of Heat magazine) defended people who have to rely on social security and presented some very helpful myth-busters about "welfare".

However, I could barely breathe with pent up frustration. As each part of the show went live again following an ad break, I'd pray that something would be said about disability and every time it wasn't, I deflated further and further (DON'T be a crybaby on national TV...DON'T be a crybaby on national TV....DON'T be a crybaby on national TV, repeat) How are you suppoed to have a debate about social security and not include sick and disabled people? We rely on it more than any other group! Here's a few facts, just in case you've never read this blog before

Disability Living Allowance (DLA) is being cut by 20%
The criteria to qualify for DLA slashed has been by 60%
1 MILLION people are to be stripped of Employment and Support Allowance
The Independent Living Fund has bee scrapped**
1500 people lost their jobs as Remploy factories were all closed
Just 3% of the entire welfare budget goes to unemployed people
Social security fraud is around £1.2 Billion per year - less than half of 1%, or 0.15% of total welfare budget. That's just £1.50 lost for every thousand or 0.15% of the total welfare
The DWP pay out much more in their own errors - 2.2 Billion
A whopping £16 BILLION goes unclaimed, generally to avoid the stigma of "welfare"
We have some of the toughest criteria for claiming social security in the developed world.
Is our UK social security systemn too generous? No again. In international terms we come just 46th out of 51, paying some of the lowest benefits anwhere
440,000 sick or disabled people will be hit by the Bedroom Tax. That's over 2 thirds.

The very second the show ended I got Dave to bust me out of there without even saying goodbye to MJ or Lisa or Mik. I cant recall another time I've been such an emotional coward, but I just had to run away (well, wheel away, but you get the idea)

As Dave pushed my official fire risk chariot back to our car, I tweeted "Yes,I was kicked off the panel at the last minute and no, of course there was no-one disabled person in my place" #BigBenefitsRow

But just as he did, something magical seemed to happen as we started the tedious drive home. My tweets exploded all over twitter, it was all I could do to read them quickly enough as they flooded in. Thousands and thousands of you, it was quite awe inspiring. By midnight I was trending 4th in the UK

And yet again my friends, we shall have to make our own news. If you've read to this point, PLEASE don't close the page until you've shared it with your networks. You can use the buttons just below to retweet or post it to Facebook. But PLEASE, if you can support us in any way, sharing this article can show producers of shows like the Big Benefits Row that we DO have a voice, we DO matter. 

As campaigners we've often reminded ourselves that "Alone we whisper, but together we shout." 

I imagine that the producers of last nights BBR got a better offer than me. Someone with a higher profile who they thought might attract more viewers. Some suggested it could be more sinister than that, but I'm convinced that for most affluent, white, able-bodied producers, long term ilness or disability simply doesn't come on to their radar. Another genetically-programmed response means we simply cannot believe in our own mortality or believe that any harm can ever cast shadows over our lives.

We can show them - and the public - that on social media if nowhere else, sick and disabled people can -and will - be heard.


  1. Replies
    1. yep shame you were not on the panel

    2. Surely someone somewhere in this society cares sue?

  2. C5 could (& should) make a whole programme (a series, even) of issues facing disabled/chronically sick people under this poor excuse for a government! You should be their chief consultant! Not just C% but the BBC & Sky!


  3. I wonder if they would treat a celebrity guest with such indifference and callousness? If they wanted you on their show they could have sent a car and provided a quiet hotel room for recuperation. They used you like a performing animal. Kudos for playing their games but you are probably making more significant progress to a fairer society on your blog.

    Media today is corrupt, trivialising and sensation-seeking. Most of the people with real integrity were weeded out years ago and all that are left are the self-promoting trolls.

  4. They are too scared we'd make the right wingers look like idiots as has happened in the past. They obviously tried to get other panelists who wouldn't but it still didn't work, they still just looked like out of touch idiots.
    Was surprised by how supportive it was to those on benefits actually, maybe the tide is finally turning and the media are realising they will lose popularity if they just carry on towing party lines. We don't need to watch TV anymore if we don't want now, so much alternative media available. Was surprised to see Wright sticking up for White Dee, saying she was sick when she spoke about having depression and being assessed for bipolar, and Hopkins was attacking her for not working.
    I remember watching his show when this was all was first breaking and seeing him talk about how many people had been declared fit for work, suggesting people were faking. Was involved with twitter campaign trying to enlighten him about how people weren't actually better, the criteria had just been changed, looks like it may have worked or we at least made him look into it further.
    Terrible they didn't let you know before you traveled to the studio, hope you get an apology and a good reason why they changed their minds. Things like this are making the media look really bad, they must sort it out.


  5. I can't believe how you were treated! I hope you get an apology as well, but I doubt it somehow.
    The government know that the tide is beginning to turn and they know that it is going to be the last full year that they are in their positions, and they are scared.
    I'll have to join Twitter as things seem to go better over there than facebook!

  6. I've shared this to my facebook page and have tagged in my local MP Andrew George who is a LibDem to see if he'll give a response and it will be tweeted, oh will this blog ever be tweeted. Sorry you were so badly treated. I didn;t see the program but hope it'll be on catch up somewhere. Love from Heather a.k.a @braintumourlady on twitter

  7. Have tweeted this, and as the show was produced by ITN News I've already forward it to their execs. The show came from The Hospital Club in London (not a Channel 5 owned studio), so I've tweeted to the venue about this blog, and lets see if they respond about their venue accessibility. Am glad you got to meet with Mik before hand, great guy, good friend of mine too.

    Plans are a foot, with a TV show presented/produced by me with others.. all in the pipeline. Lets just call it "The Truth About...". << stay tuned to this, you might be on it.

    But this CH5 show fell a part half way through it, and lost it's course and focus, shame that. Shame that ITN News Production who made it, weren't in control much, could have been done much better, but.. hey that's channel 5 for you.

    Keep well Sue (and Dave and family), and in touch.


  8. Remember when Tanni Grey Thompson couldn't collect her award at the sports personality of the year award? Appalling that nothing has improved since then. I didn't realise wheelchair users were a 'firehazard' (how often do tv studios catch fire anyway?)

    Your determination to get our voice heard is admirable Sue!

    1. Re. Fire risk: If your ATOS test centre is upstairs and therefore you have to use the lift, don't forget that you do not use lifts in case of fire!
      Therefore you must get ATOS to make alternatives and if they make you travel further to a suitable Ground floor centre, you claim more expenses back.

  9. Well, there was a disabled person on the panel-- White Dee. But from the comments on the Twitter hastag, a lot of people saw her depression as nonexistent, a lie (because armchair doctors/claimant haters are *so* good at diagnosing from a distance!) or something to joke about. But I see your point and wholeheartedly endorse it. It doesn't matter if you have visible and/or invisible disabilities-- if you have a disability of any kind you're invisible anyway, and horrible treatment seems to be something we're supposed to take without complaint. Your experience is showing up Channel 5. Everyone's talking about you, not them. Who knows, they might even invite you to appear on The Wright Stuff! I hope they do!

    1. Depression isn't a disability, it's an illness, which is totally recoverable from.

      The Gov't seem unable to differentiate between illness and disability, which is why they keep banging on about disabled people languishing on sickness benefits and how they are doing them a favour. The people languishing on sickness benefits of course include disabled people but a large part of them are just ill, which in turn can be disabling, but it's not a disability in itself.

  10. i only watched a little but once you put a person like Hopkins in a show the show is meaningless as she is just a failed apprentice and knows nothing about sickness or disability

    i bet no one mentioned on the show the many that have died in going through the welfare reform process over the past 4 years?

    i would myself never go on a show if it were to be edited i would only ever go on a live show so that people could see the outline of my body and the barbaric brutality i have had to endure over many years

    and you can be assured i will never be invited on any show just for the way i look so in reality the whole programme is just a complete nonsense

    only people like myself who look like prisoners of war will be able to tell what it's like on benefits and for those thinking it's a good life are just scum and with regret most in the uk are

  11. Shared to Twitter, FB, google and blogger.

    What struck me last night Sue (more than anything) was how clearly distressed you were on behalf of other disabled people - Your apologizing to (us) on Twitter moved me almost to tears.

    Of course so many of us were sitting at home with our 'Hopeful' faces on waiting for you to appear on our screens and of course we were incredibly disappointed/angry/deflated down right p***ed off when you didn't BUT - In no way was this your fault - You were there - wobbly, sick, (hungry by the sounds of things) and determined to get up there and SHOUT for us all despite your own restrictions and that means more to me and others like me than you could possibly know!

    So Thank you - For getting there, for representing us the way you do and for giving us HOPE!

    I wouldn't mind an apology from Channel 5 but YOU owe us nothing - we owe you (an awful lot)

    Thank You ! X

    1. To all horrible Katie like people out there this ^ is what we call a thoughtful human being, as are all the nice comments made on here. :)

    2. I totally agree with you Phil.
      Thank you Kimmie - you have said what most of us wanted to say :)

  12. I suspect that Sue was dropped because they know that supporting disabled people with welfare is popular. Ch5 wanted to keep the focus on the less sympathetic recipients.

  13. I have shared the blog entry. I am appalled at your treatment. I have not yet watched the show fearing it would be an anxiety/depession trigger, however I may give it a go now that I have heard some OK things about it.

  14. Shared on FB, Twitter, Wordpress blog and Blogger blog. I couldn't stomach the show. That and IDS's performance in front of the commitee has my BP through the roof.

  15. Hi Sue
    I'm so pleased you were able to at least be there and try to put forward our point of view. I understand about living on adrenalin and being hyper because of it, trouble is the coming down is horrendous and lasts so long.

    I watched the programme last night with bated breath in the hope that someone would tell the world about how hard it is to live with a disability, especially a hidden one. I was so disappointed that the disabled weren't even mentioned. I felt that people on benefits did come out better at the end of it but I found it was purely a shouting match, everyone shouting over everyone else. I was also impressed how the Matthew Wright put Katie and Edwina in their places, not letting them take over. I was just so disappointed at the whole thing, for someone like me with ADHD the shouting and the arguing over each other was a nightmare. I was pleased that there came out of it a better perspective of those on benefits but still those of us on disability benefits are still stigmatised as usual.

  16. I was really looking forward to seeing you tell it how it is in the real world, then spotted a tweet saying you'd been bumped. Somehow think a ramp would have miraculously appeared if Tanni G T had been a guest!
    Terry Christian came out with a classic on Wright Show this morning re KH &EC: ...a competition between Katie Hopkins and Edwina Currie as to who could be the most hatchet faced horrible haridan on there..... and both Matthew and Terry agreed it had turned into a bit of a bear pit!

    Think twitter trending last night (and today?) speaks volumes ;-))))

    I hope that you're having a pj day and cutlery drawer is getting restocked in readiness for when spoons are required for next hospital trip etc.

    We are Sparticii

  17. i just posted this onto Norman Baker's Facebook!

  18. I specifically didn't watch the show because I read Katie Hopkins would be on it.

    I'm not in the slightest bit interested in her opinion, but I would have been interested in yours.

    I'm really impressed that you're prepared to campaign with the little energy you must have but I'm truly disgusted at the way these shows have treated you. I have only very mild Crohn's but I know that just to get to that studio was a massive thing for you.

    What a difference it could make if the government would actually look at the statistics properly and listen to how life actually is for disabled people.

    All the best with your campaigning, you have a voice that is worth listening to and I do believe that you can make a difference.

  19. I was surprised too at the favour apparently shown. The rotating panel of four always seemed to have 3 out of the 4 defending claimants. It did strike me though as being too short and too ambitious, but a nice change though. Hopkins and Currie came across as 'not very nice' people, not just for their views, but for the way they conducted themselves. I felt it was ironic that when people complain that these policies are carried out of spite, that the main proponents on the show spoke with such venom.

  20. Sometimes, there appears to be no justice in this world. You have clearly got a huge amount of courage and stamina, in spite of your (I am reluctant to use the word 'limitations' ... given that you have demonstrated more guts than almost anybody I know.

    I speak as an EX-conservative (small 'c' intended) party voter; if, by April next year, I am even so much as slightly tempted to vote for them (ever again), then, please, someone shoot me!!

    1. I suspect you are safe from any bullets mate, you obviously realize the gravity of the mistake that it is to vote conservative party and don't be too hard on yourself, you are not alone in putting your X in the wrong place, you're not the first and you won't be the last. It's the future that matters now and it's good that you, like myself and millions of others, will take pleasure not putting an X anywhere near conservative party on your vote paper! Ha ha.

  21. You have a form of Crohn's disease? Might I recommend a few things for your bowel that I believe will help greatly. 1. Bentonite or montmorillonite clay. 2. Electroherbalism. That is if you have a frequency generator and 'Spooky! The affordable rife machine' 3. Nitrillosides: basically, several apple seeds or even apricot seeds.

    1. No one needs your advice, mate. Jog on.

    2. I was giving this blog some brain time, but if your idea of a debate is to ridicule anyone who doesn't share your view, it is instantaneously made a nonsense.

  22. How dare they give oxygen to Hopkins and Currie and ignore someone with a genuine story to tell.
    Those vile creatures only spout rubbish to keep themselves in the headlines.
    Both will have been paid for their dubious services.
    In future when asked, only agree if there's a fee and transport, they'll make sure you're heard if they've paid you.
    Good luck.x

  23. Have shared to Facebook. Hope everyone else who reads this does the same.

  24. Sorry to hear you were booted, but it's not true to say that no disabled people were represented - Dee from Benefit Street is disabled and she spoke on the panel. In particular she talked about the difficulty of working when you have an invisible, variable illness.

    1. Again, Dee is ill, there is a difference between illness and disablity. Some disabled people can be WELL in themselves, and with the right help could work, and indeed many want to. Equally, of course, there are disabled people who are also ill, or whose illness has become disabling, but illness and disablity are not the same thing. This is a fact the Gov't seen unable to grasp, assuming that we can all work if we are given work that plays to our skills, The trouble is some of us are too ill to get out of bed most days, let alone rock up to work

  25. as i said above i bet no one mentioned on the show the many that have died in going through the welfare reform process over the past 4 years?

    that's the most shameful part having a debate or meeting and not even discussing the main issue ?

    sounds to me that all those involved in the fixing of who to be on the programme panel have a north Korea type of mentality as to not even address the main goal of keeping people alive in the future and preventing their death was not even up for debate so their deaths in the future will just go on as normal

    sounds to me the programme was just a Tory piece of propaganda and a farce of the very worst type to witness

    1. Propaganda equal to treason. Conservatives should remember that their in-bred greedy nasty ideological way of life is NOT the majority mind-set of the population of Great Britain OR the world and they are manipulating the repressment and killing of vulnerable decent people for the purpose of financial profit, which is sick, sick, sick.

  26. You have great insight when you say 'I'm convinced that for most affluent, white, able-bodied producers, long term ilness or disability simply doesn't come on to their radar.' I worked for LBC, IRN, & Radio 5Live & I am ashamed to say I never gave it a thought - until I got MS.
    Thank you for all you do.

  27. Another amazing piece of journalism, Sue. Your treatment was apalling but you have risen above it to give us yet more of a voice.

    1. Who was this 'Margeret Thatcher' imposter? There is only one 'Iron Lady' and that's Sue Marsh!

  28. Have shared on facebook, don't watch tv as most of it's rubbish & brain numbing, get my info off the net, I'm in a wheelchair myself & know how difficult & tireing even the smallist journey's can be let alone having to deal with all that. well done you tried & anyways you've got more chance of spreading the truth & getting it heard this way :) x

  29. Wild theory here so take this with a pinch of salt and don't shout at me. Now I know some companies have apprenticeships or pay companies to employ young people, but pass the age for that and you're screwed. If the government are so fussed about benefits and if that person wants to work, because some have disabilities, then why can't they find a way to pay the company to train you up and then the company pays you with the money given. Some companies don't take on workers because it's too expensive and time consuming to train them, that and they always expect people to PROVE themselves. Then there's people who though no fault of their own get an illness, and find it hard to go back to work after. I myself worked for 12 years 9 till 5, then had to leave after I nearly died with crohns, now I find it really hard to even work for one day without getting exhausted. So to get my energy and confidence back I have gone back to Uni to learn a new career, get a good grade and start work in a much better paid job, and so far it's going great.

    1. Good luck. Are you are saying education could be a cure for your crohns in a psychosomatic kind of way?

    2. In the same way exercise "cures" chronic, clinical depression, and powdered grass, curry spices, apricot seeds and selenium tablets
      "cure" cancer...?

    3. Yes, it would be nice to think it was that easy wouldn't it, but i am sure plenty of people who suffer from Crohns are not going to believe in that sort of 'wishful thinking' cure anytime soon and unfortunately they would probably be right to be doubtful :-(

  30. But yeah I feel for you Sue. Like I said I have crohns as well, at one point bleeding 6 times a day, everytime I went to the loo, with what can only be described as something that looked like you had passed some of your intestine, and we are talking lots of blood and smelling of strong vinegar or like someone had died. Now we get to the benefits bit, having to PROVE to the health company that I was ill in order to get money, and oh you can lift your hand or a light box you can work. So lets put aside the fact I was bed ridden for a month, taking another month to be able to stand and walk again from having to lie down a lot, and having lost all confidence to go outside, can't eat like normal people as I am now allergic to lots of foods and dairy, so won't be able to socialise with people or go out. That and the toilet thing, which isn't as bad now but still bleeds if I get too stressed or work too hard. Like I said I am retraining in computer games design at Uni so I want to work, but then the anxiety is still there, because I hope to finish with a first or at least a 2.1, yet I still won't get work, because of the stupid interview process where you have to prove yourself even though you passed uni with a first and my mental and physical disabilities. Also the fact of not being able to work a full week anymore, some days my crohns makes me so tired I just have to go to bed in the afternoon, or you get days when you get flare ups. Now what boss is going to say, oh yeah no probs take a day off every now and again! Someone needs to give Katie crohns or some other disiablity and let her see what it is like.

  31. I understand how hard it is not to lose your temper, I admire your self control. I'm too angry to have a sensible conversation with anyone about Atos, the WCA, the DWP because it frustrates and appalls me that much I end up shaking, hyperventilating, or in tears - then people just think I'm a hysterical idiot. It's awful. Love and compassion to you.

  32. Brilliant blog. Scandalous that a show supposedly featuring 'experts' found room for the vile Hopkins and Currie, but not you. There never was much hope of this programme being a decent debate but when I saw those two were on I simply couldn't watch. Terrible to put you through all that for nothing.

  33. A way to raise awareness? https://www.facebook.com/events/1446427485588501/?notif_t=plan_user_joined

  34. great article - very moving.

    I shall re-blog to Sodium haze and these articles may be of interest.



  35. You would have tore those right winged bigots apart if you had been allowed the chance. Although, their hatefulness tore themselves apart, but all the same it would have been a great stage for some words concerning the real disability plight. You might have needed a bullhorn though.

    I am without a doubt that they fear you, not only because you are articulate but because you have the ability to distress the media and your opponents with accurate figures, blatant truths, and fact finding reports that the government have failed to do. You have a very unique way of debating on tele ( you tell the truth )

    But most importantly, you deserve a civil apology with some decency and human respect.

  36. I think what you do is brilliant! You have courage and an inner strength to fight for everyone. I spend my days in pain and isolated in my home due to my disability's , but I am grateful to your post's they have kept me going since I started to read your work. I was suicidal with the worry about how to live if benefits and DLA are cut any more. But you have saved me and stopped me being a coward!! so please be proud of yourself you help so much more than I can say. Well done on all you do your brilliant x Thank you.

  37. Dearest Sue..Thank you SO much for all you do for ALL of us every day, and thank you for the way you TRIED to represent us in the debate. I was SO disappointed when I realised you weren't on the panel as I had been waiting with anticipation to hear you speaking your words of truth and wisdom due to your first-hand experience as well as your excellent knowledge of facts and stats. You were treated in an appalling manner and deserve an enormous apology from Channel 5. Let's hope that the silver lining in all of this will be that you get an even BETTER chance to have your say than you would have done on the BBR show. (something good often comes out of the most dire situations) xx
    Overall, I thought that the show WAS worthwhile, because lots of good points were made and white Dee conducted herself with dignity whilst the two harridans really showed themselves up ! Although Dee did her best in the time available to explain what it's like to have a variable 'hidden' disability, there just wasn't sufficient mention of the disabled as a group who have taken a hugely disproportionate measure of the benefit cuts which has felt like a deeply personal and degrading attack on each and every one of us. Life was already hard enough without having it continually confirmed on a day-to-day basis just what little worth/value our lives have...both from those in authority who should be upholding our human rights...AND from the public 'sheeple' who have been so brainwashed by the distorted media coverage that they believe us all to be fraudulent scroungers :(
    But for me, the 'elephant-in-the-room' is STILL Atos.....4 years on and our disabled friends are STILL dying under this remorseless, relentless, heinous, 'revolving door processing' of society's most vulnerable. Being severely sick and/or disabled and continuously being found 'fit for work' and having your only income stripped away from you is like a dagger in your heart every time. When you're already running dangerously low on spoons every day, it's SO hard to keep fighting for what's rightfully yours...and even worse when your right to appeal is removed, legal aid is removed...and even our right to protest as now been removed (not that it will stop us when we have stars like YOU to encourage us Sue) People like you give us HOPE and help us to stay off the suicide list....
    I'm in a weelchair with multiple conditions. I will never be 'cured'. I am officially retired due to ill-health, but I'm now facing my 4th cycle of Atos terror. I don't know how much more I can take, but campaigners like you help me to stay strong. Please give as much publicity to the National Atos Demo Day on 19th Feb as you can and keep on keeping on Sue. I wish you dessert spoons, tablespoons and even ladles !!.... and with ALL my heart THANK YOU :) Love from Julia (running on last few egg spoons ! ) XXXX

    1. Do remember Julia, that ATOS are only the DWP's 'hired hands'. Blaming them is like going after the gangster's thugs without going after the gangster himself. The DWP are ultimately responsible for everything that ATOS do, and they (DWP) are the real enemy.

    2. regarding Atos*
      I am waiting for my test!
      I intend to explain politely that they are breaking the law,
      you see the office of disability issues(ODI)
      state on there web-site that the social-model should be used when accessing disability* also they prefer all government dept's use the same method!! why then is Atos using the outdated medical-method? i.e. can you lift this box? can you walk? NO* it's dangerous* I fall!!

  38. i'm inspired by your bravery x

  39. This comment has been removed by the author.

  40. We all have to remember as well that Edwina Curry is a has-been. She was sacked over eggs and her colleagues were glad to see the back of her, as well as the public!
    As for Katie Hopkins, I've never seen her as I don't ever watch TV, but she sounds as though she is another has been with a big gob!
    The media, in all forms, must be scraping the bottom of the barrel to drag up such vulgar and screeching witches!

    1. The thing about Katie Hopkins is she hasn't been and is never likely to be.

  41. I don't know why but I am shocked!! Sharing the heck out of this!!

  42. Iain Duncan-Smith has to go he is a public menace.

  43. Oh, poor Sue! I really feel for your experience. I'd actually been dreading the show once I saw it in the schedules, and I could imagine just how it was going to be.

    Actually, it all got very shouty which of course is what TV producers love. But before that, I thought it was a very balanced 'debate', with the presenter in particular being careful to debunk most of the welfare myths peddled by The Daily Stink along with the DWP and Downing Street.

    But, as you so rightly say, we have to make our own news. I just wish "they" had seen fit to give you a voice : White Dee from Benefits Street was great, but she was given far too long, and there are plenty of articulate, lively, newsworthy disabled people who should have had a voice. (Oh how I wish Ian Dury was still with us - he'd be a shoe-in for all these debates).

    Chin up girl - we're still with you! (unlike the majority of morons whose tweets were displayed during the show; needless to say, mine weren't used despite being crafted to be TV-worthy).

  44. Thanks for this, I have posted a link on ATOS NATIONAL DEMO @ SHREWSBURY.

    Is Cameron getting his due deserts whilst still in office unlike the smiling assassin Blair .41 Bishops are writing to him regarding his stance on Austerity Measures causing Poverty whilst Cameron Defends them by pontificating about them giving People Hope .
    Cameron and Blair show they both have the same lack of morality concerning their ‘quatuor ‘ with Brooks and Murdoch .
    It was published in the Media and shown on the News Brooks attending Downing Street each morning at 10 am for her Briefing from Blair .Private Meetings with Blair Associates were more frequently held than Cabinet Meetings ,so where were those still in the Labour Party today when this practice was going on .
    Since Libya now has a Government and not Gaddafi’s sole rule Cameron promised Blair he would repress incriminating evidence that Blair and Straw gave up Gaddafi non supporters here for Business Deals .Cameron in return was to have Blair’s backing within Political Circles to be the next PM .
    As we know Cameron is no Friend of the UK by his Draconian Reforms Welfare ,Employment ,NHS ,Post Office all of which Blair instigated .The Media are Briefed by Downing Street on different issues so what gets reported is the same Spin we read .Media not controlled Politics not Dirty .

  46. seems is nowhere to watch this as for some reason its not on channel5 on demand service.


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