Earlier this month (3 February 2014) saw the broadcasting of 'The Big Benefits Row' on Channel 5 television. "Roll up! Roll up for the spectacular sight!" it seemed to shout. "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 programmes like 'Benefits 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 that 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 five approaches, I suppose one might actually come to something.
Initially, the plan is always for a real 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 that the task is almost impossible.
For some time now, the Department of Work and Pensions (DWP) and No 10 Downing Street have refused to put anyone up against me (and presumably other campaigners) at all. At first, three (all from the BBC) went ahead, but the various researchers were all genuinely shocked at the lack of government engagement. All said they had 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. Work and Pensions Secretary 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.
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 three minute bulletin. A coalition MP becomes a "government 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 with scrounger bashing vitriol the moment we go live. 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 have also uncovered vast and shocking welfare stories only to find that I can't get them published anywhere in the 'mainstream' media. 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 have 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 disappointment and frustration.
So it was that I bumped down those now familiar media steps last week for 'The Big Beneft Row' with depressing familiarity.
First, I would be on the panel. Then the panel became the front row with assurances that 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". So yet another hour became a 15 minute section of the show from which I might get to throw in a soundbite or two. This in turn became, "You'll get a chance to speak from the audience", which soon 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. Four years of researching, 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 from Worthing for nothing. They assured me, repeatedly, that this wouldn't be the case.
As it happened, I also had a hospital appointment in London on 3 February at 3pm. As only us sick people can really know, that is traumatic enough in itself. It takes three hours for my husband, Dave, to drive me to central London and three hours to get home. Ordinarily, that alone would exhaust me for days after the actual event. But instead, yesterday, I chose to wait a full six hours for 'The Big Benefits Row' to start. By 8pm, every one of my loved-ones know not to phone me or to 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 even to contemplate a day like I had planned for in connection with this programme. 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 cannot eat anything significant, I get a bit hyper. That good old fight or flight response recalls echoes 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 and ITN, to name just a couple), Lisa Egan (Sky contact for disability related welfare issues and an articulate, intelligent blogger) and I (Guardian, BBC and my little bloggy-woggy) all met up beforehand for those who wanted 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. Did you know that you cannot 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 cannot use almost any of the London Underground? I didn't know any of that stuff before I experienced it.
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 three wheelchairs. Four would apparently tip the building over into a dangerous and unforgivable fire risk. They couldn't evacuate four of us!
I had 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". (The "them" is a nice little dehumanising detail, eh?) "You can't let them sit at the front, it makes them look too important" (I précis), etcetera. 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 is unlikely they could have overcome the first and simplest of barriers and actually got up onto the stage.
Already brimming with brittle frustration, adding Edwina Currie 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 was varied. I think it surprised everyone when Rachael Johnson, (Mayor 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 actually be said about disability and every time it wasn't, I deflated further and further. How are you supposed to have a debate about social security and not include sick and disabled people? We rely on it more than any other group! Here are a few quick facts, just in case you've missed them:
* Disability Living Allowance (DLA) is being cut by 20 per cent.
* The criteria to qualify for DLA has been slashed by 60 per cent.
* A full one million people are to be stripped of Employment and Support Allowance (ESA).
* The Independent Living Fund has been scrapped.
* 1,500 people lost their jobs as Remploy factories were all closed.
* Just three per cent of the entire welfare budget goes to unemployed people.
* Social security fraud, which everyone goes on about endlessly, is around 0.15 per cent of total welfare budget.
* The DWP actually pay out much more in their own errors, £2.2 billion.
* A massive £16 billion goes unclaimed by people in need, 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 system too generous? No, again. In international terms we come just 46th out of 51 countries, paying some of the lowest benefits anywhere.
* 440,000 sick or disabled people will be hit by the Bedroom Tax. That's over two-thirds.
The very second the show ended I got Dave to bust me out of there. I cannot 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 disabled person in my place" #BigBenefitsRow
Then something magical seemed to happen as we started the tedious drive home. My tweets exploded all over twitter. Thousands and thousands of you, it was quite awe-inspiring. By midnight my points were trending fourth in the UK. Once again, my friends, we shall have to make our own news. Sharing this article can show producers of programmes like the Big Benefits Row that we disabled and sick people do have a voice, we do matter.
As campaigners we have often reminded ourselves that "Alone we whisper, but together we shout." I imagine that the producers of 'The Big Benefits Row' got a better offer than me. Someone with a higher profile who they thought might attract more viewers. 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.
© Sue Marsh contributed to the new Briefing on Employment and Support Allowance (Amendment) Regulations 2012 (http://www.ekklesia.co.uk/ESAbriefing) as project leader. She was one the the authors of the original Spartacus report, 'Responsible Reform' (http://www.ekklesia.co.uk/responsiblereformDLA), which exposed the lack of support and proper verification behind the replacement of Disability Living Allowance (DLA). She has lived with severe Crohn's Disease for nearly three decades, and campaigns to raise awareness of hidden disabilities and long term illness. She spoke on welfare reform at the 2012 Greenbelt Festival, as part of a Children's Society / Ekklesia panel, and has continued to research, lobby, advocate, broadcast and write on these vital issues. Her 'Diary of a Benefit Scrounger' blog, from which this post is adapted, can be found here: http://diaryofabenefitscrounger.blogspot.com/ Sue also writes for the Guardian's Comment-is-Free website: http://www.guardian.co.uk/profile/marsh-sue Her Ekklesia blog is here: http://www.ekklesia.co.uk/suemarsh