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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.
Tuesday, 4 February 2014
Monday, 20 January 2014
John Pring Disability News Roundup
If it isn't here, it probably wasn't very important
* The Department for Work and Pensions has caused outrage after telling senior civil servants that it was "business as usual", despite the court of appeal ruling that its "fitness for work" test discriminated against many disabled people.
* The number of disabled people eligible for a Motability vehicle solely on the grounds of a physical impairment could be set to plunge to just one-third of its current level within four years, government figures suggest.
* A disabled woman has been left in a coma, apparently as a direct result of the government's welfare reforms, MPs heard this week.
* The number of occasions on which disabled people were prevented from using step-free tube stations in London because of staff shortages has more than quadrupled since 2009, a Freedom of Information Act request has revealed.
* People applying for the government's new disability benefit are facing delays of more than six months, according to a disabled Labour MP.
* The government should draw up a strategy to ensure advice and legal support are available for disabled people and others who get into difficulty in their daily lives, according to an inquiry headed by a disabled peer.
* The UK's high streets are frequently off-limits to young disabled people because of staff attitudes, broken equipment, blocked shopping aisles, out-of-date information and inaccessible entrances, according to a new report.
Rachel Reeves Social Security Speech
So, after 3 months in the job, today, Rachel Reeves made her first major speech on our social security system. If you live your life with a long term illness or disability, living in terror at the coalition’s brutal changes to benefits and support, this is not the speech to find out how – or indeed if – that fear will continue under a Labour government.
There is no mention of illness or disability at all apart from this
“Now it’s important to say at the outset that there will always be people who cannot do paid work, because of illness or disability.Welcome words, hard won by campaigners before the reshuffle, but I imagine many will conclude that the time for reassuring words is fast running out. We need concrete alternatives to the chaos unfolding, chaos that affects every aspect of our lives at the moment.
And it is part of our responsibility to them to make their rights a reality: rights to dignity and respect, to a decent standard of living, and to the resources and support that can empower them to contribute and participate equally and fully in society.”
Most of what we are told today has already been well trailed. It’s worth noting that those naughty little trouble makers at the Sun and the Telegraph were 100% wrong – as usual. There are no plans to remove benefits from the under 25s other than the compulsory work guarantee that promises at least 25 hours of work at the minimum wage after 2 years of unemployment (1 year for young people.) Whilst I imagine the debate will rage over sanctions, for me, a paid job is not workfare. Most people who find themselves out of work want a job more than anything else. If Labour can guarantee one, it seems reasonable to me that people should be expected to take it – within reason of course.
And it’s reason we all understandably question. Sanctions are currently used as cruel punishment, often unfathomable and unfair. At the moment, there is no reason at all in the system and few yet believe Labour will run our social security system with more sense and less judgement than the coalition.
Labour’s support for the Benefit cap and an overall cap on social security spending has already been out there for yonks. We might conclude they are unworkable policies based on ideology rather than need, but it seems they are here to stay.
The speech announces that jobseekers who don’t reach minimum standards in maths and English will be required to take training or lose benefits. So some more information on sanctions and the attitudes of a potential Labour government towards them.
“So today I am announcing another important plank of our plan to address this problem: a new requirement for jobseekers to take training if they do not meet basic standards of maths, English and IT - training they will be required to take up alongside their jobsearch, or lose their benefits”But finally, and for me, most controversially, Reeves suggest that Labour will “reward work”
“by ensuring that the contributions people make are properly recognised in the social security system.”This is a thorny issue. There is certainly merit in looking to see whether those who lose their jobs might temporarily (Reeves mentions 6 weeks) receive a higher rate of benefit to cover that initial period of devastation. Most people do find new work quite quickly, yet are shocked when they learn just how little they get back for, often a lifetime of contributions.
So, for the easiest cases and those closest to a return to the job market, this policy has potential. But as campaigners have always argued, if this contributory reinforcement is made across our social security system, where does it leave those who can never work? Or parents who must take time out to raise children? Or Carers?
So whilst I tentatively welcome a short term boost to unemployment benefits, I hope Labour are looking very carefully at those unable to meet such a “responsibility”.
“The IPPR have today announced that they will be looking at options and costings for increasing the initial rate of Jobseeker's Allowance paid to those who have built up a sufficient record of contribution.There are undefined commitments to improve the Work Programme
If this can be done in a cost neutral way by extending the period people need to be working and paying national insurance to qualify for contributory JSA it would be a very valuable step forward.
For example, a higher rate of Jobseeker's Allowance paid for the first six weeks of unemployment to those who have lost their jobs after perhaps four or five years in work could be a big help in cushioning the immediate financial impact of redundancy and give them a better chance of getting back into work and back on their feet sooner.
And it would be a powerful way of restoring that understanding of collective insurance against unemployment that was such an important impulse behind Beveridge’s original plan but which today has been all but lost from sight.”
“Under this government we’ve seen a billion pounds paid out to contractors on a scheme that has seen more people return to the Jobcentre than find a job. A Labour government will not be renewing those contracts in 2015-16.Within the Spartacus network, we’ve recently completed a far reaching study into the Work Programme, ESA and the future of work for people which we'll be releasing soon. We too recommend that
In place of the top-down, bigger-is-better model imposed by this government, our replacement will be jointly commissioned by central and local government, so it can be better integrated with local economic strategies more closely connected to local businesses, and make better use of innovative charities and social enterprises.
You’ll be hearing more from me and the rest of Labour’s Work and Pensions team about this, and the better targeted support we need for key groups such as single parents and disabled people over the months to come."
“As in so many areas, it is early, preventative intervention that is the best way of making savings over the long term.”
And few Labour supporters will be sorry to hear that
We have 16 months left until a general election. I fear this speech will do little to reassure those who want to hear real details from Labour on social security and little to convince the general public that Labour will be “tough”. Trying to be all things to all people runs a real risk of ending up meaning nothing to no-one.
However, those with endless patience might decide to wait to hear more. How long they will wait is hard to tell.
A Labour government will mean new rules to prevent the abuse of zero hours contracts, and the closure of legal loopholes that allow migrant workers to be exploited and used to undercut all workers’ wages and working conditions.However, on the whole, this speech merely sets out a direction of travel. Perhaps as it took so long to decide what that direction would be, it’s understandable that today, we still see little detail. The speech seems to walk a strange tightrope between genuine solutions and Daily Mail sound-bites. Perhaps that was just the line the shadow work and pensions team hoped to tread.
We are developing plans to improve the help that the system gives to older workers who lose their jobs.”
We have 16 months left until a general election. I fear this speech will do little to reassure those who want to hear real details from Labour on social security and little to convince the general public that Labour will be “tough”. Trying to be all things to all people runs a real risk of ending up meaning nothing to no-one.
However, those with endless patience might decide to wait to hear more. How long they will wait is hard to tell.
You can read the full speech here : http://labourlist.org/2014/01/rachel-reeves-speech-a-one-nation-approach-to-social-security-taking-the-next-steps/
Tuesday, 14 January 2014
DWP Limbo
Ahh, the DWP outdoes itself again. They have now stooped so pathetically low, they might as well take up limbo dancing. They'd be unbeatable.
Yesterday on social media, a Facebook post started to circulate. Whilst I haven't yet been able to track down the boyfriend who wrote the post, in my now very great experience (too, too great), people tend not to make up ESA stories about things like Ewing's Sarcoma and share it in an official DWP format.
"My girlfirend has Ewing's Sarcoma (a rare bone cancer) and according to the DWP she cannot claim for employment and support allowance [previously incapacity benefit] because she "contributed to her medical condition"...." https://twitter.com/Avitusparta/status/422029617403162624/photo/1
Ewing's Sarcoma is almost exclusively a childhood bone cancer, so no point getting all judgemental that she may have smoked or eaten her way to such dramatic ill-health.
http://bcrt.org.uk/bci_causes_of_ewings_sarcoma.php
"There has been a lot of research into possible causes of Ewing's sarcoma but the exact cause remains unknown....There are no known risk factors that people are born with (hereditary factors) that cause Ewing's sarcoma." http://bcrt.org.uk/bci_causes_of_ewings_sarcoma.phpHaving discussed this with some of the UKs finest social security experts last night, we could only think of 3 possible explanations :
1) It's a typical DWP cock-up. Nothing sinister, no conspiracy at all, just their usual ability to get 100% of everything wrong.
2) There is more to the story than we know.
3) The "girlfriend" is the first victim I've heard of from this : http://diaryofabenefitscrounger.blogspot.co.uk/2013/01/esasos.html?m=1
Way back in the beginning of last year (2013) the Spartacus report "ESASOS" warned, that the DWP were sneaking through some changes, unscrutinised by parliament. They insisted on calling them "minor" but we thought they were very serious changes indeed. ttp://diaryofabenefitscrounger.blogspot.co.uk/2013/01/esasos.html?m=1
Effectively, it gave the DWP the right to refuse subsistence support to sick and disabled people in the UK if - in their opinion - the claimant has somehow hindered their own recovery or not accepted treatments
Benefits could be removed for failing to take certain medical treatments, even if a consultant decided for some reason that they were inappropriate.
"Soon, thousands more people could be judged as fit to work, without being consulted, on the basis of an “imaginary” aid they don’t own or may not even be able to use! The infamous "imaginary wheelchair test".It gets worse. Even if returning to work may clearly put you at risk, these changes will mean you can still lose disability support, as long as the assessor believes that trying a new therapy or treatment might reduce that risk. Whether you try it or. Confused? No, it really is as ridiculous as you think, it's not just you.
As chris Fry, a legal experts with Unity Law pointed out at the time
"How individuals are assessed to receive ESA could give rise to large numbers of legal claims being made against them. These changes immediately put the UK government at risk of breaching article 9 of the European Convention for the protection of Human Rights, which preserves an individual’s right to ‘thought, conscience and religion’. The new rules provide for an individual to be refused ESA if they do not take any medication or accept an aid which DWP believe could aid their condition. For example, they can now impose a financialpenalty on individuals who refuse treatment on, say, religious grounds. Given the very recent decision involving the Christian, Nadia Eweida and the court upholding her right to wear a cross – the government is on very rocky ground with these changes.”
Chris Fry, Solicitor and Managing Partner at Unity Lawwww.unity-law.co.uk"A leading professor at UCLH said :
"For this Kafka-esk philosophy to be extended further is little short of shocking.Back to this case, the only reason I can think for them coming to this kind of decision intentionally, could only fall under this rule. You can't "cause" Ewing's Sarcoma. you can't exaccerbate it or make it worse. There are no known risk factors.
I can think of countless examples where the patient could be or will be seriously disadvantaged by this being implemented.
It also begs the question as to why someone who might be helped by an aid wouldn't already have it.
It is overtly insulting to the medical (and other) staff who manage people with disabilities as it implies that we would have failed to arrange for that aid and that we were complicit in a denial of that patient's proper rehabilitation. It is far from unusual for patients to try all sorts of aids/interventions and find them lacking in value (or as you say even deleterious). Of course there are many strategies that clinicians use to try and optimise their use but when these fail we abandon the aid/intervention. It appears that patients could now be penalised because they are not using aids that have been proven to be of no value or have actually made them worse.
The whole policy comes across as akin to the worst excesses of the former communist regimes in Eastern Europe."
So one way or the other, it can only be either that the DWP are so incompetent that they don't read the files at all, (as the nice lady at the DWP explained was the case with my Disability Living Allowance application) OR, they're so cruel that they believe children who fall victim to the very worst illnesses deserve nothing to live on as adults. Either is pretty horrific when you think about it.
Wednesday, 8 January 2014
Who Benefits from Benefits?
Here's something else we never talk about.
I am lucky. I am privileged. I am blessed.
Sometimes I think I'm so lucky, I worry it can't possibly last. I was born in the top 1% of all lucky, into one of the richest areas of the richest countries on the planet. Though "poor" here, I always realised (we were the Band Aid generation....) that my poverty was incredibly relative. I was born to loving parents who encouraged and inspired me to be the very best I could be. I met that special soul wating just for me, to love and cherish me for richer or for poorer, in sickness and in health. I have 2 healthy, bright, funny children. I live in a beautiful home in a beautiful tree lined avenue. I have enough to get by with a little more than I fundamentally need to survive. I went to university despite poverty. I've travelled. My husband works in a stable job.
But I'm luckier even than that. Luckier than most of you. Because I'm sick. If I lived almost anywhere else on the planet, I'd have died when I was nine and my tonsils sent me into toxic shock, long before I ever developed Crohn's disease. Then, I'd have died when I was 16 and my first real Crohn's crisis took hold. Then, if by some miracle I'd survived those little deaths, I'd have certainly died at 21 when my bowerl burst under the strain of a 12 inch abscess, rotting my appendix clean away.
Almost everywhere else on the planet, if I HAD survived any of those events, broken and septic, I'd have almost certainly been disowned or abandoned or left to beg on the streets.
But I live in a country - so prosperous and privileged - that developed beyond the point of living to eat, to be able to live to care. We decided long ago that people like me were as valid as everyone else.We signed up to the UN principle that all people - broken or whole - had the right to a home, to live independently free from persecution. We're the only country in the world that doesn't discriminate on provision of healthcare in any way. Say it again? Every time it makes me proud.
And so onto privilege. I am uniquely privileged. I live in a country where I can speak freely. I have countless opportunities to express myself and the freedom to know that others will be free to listen and read if they choose. I am kept alive in comparative comfort and enabled to parcipate in society in a million different ways. Members of the Spartacus Network changed the debate on social security from their beds, proving no-one but no-one is barred from taking part in our society. The government I oppose keep me alive to do so. That's almost miraculous by global standards, but we forget.
In return for the compassionate support of a country I love, I have given years of my life and thousands of hours of my time trying to make this privileged corner of our planet even better. I'm no saint, I won't list how here, but I've tried to give back as much as I've taken in as many ways as I can whenever the opportuniy offered itself. I sort of made it my "job".
So when some sneer about "welfare campaigners" or imply that defending basic human rights is somehow "degrading", perhaps this post explains why I fight so hard for what they see as a demeaning status quo. Call it "welfare" if you like, dream of Halcyian fields where perfect access and an end to all prejudice makes social security unnecessary.
But we had it right. A lot of it at least. We did a good job. Of course there would always be new steps forward to take, but on the whole, we weren't moving backwards and hadn't been for some time. We were making progress every day towards the inclusion and acceptance of those living with illnesses and impairments. People like me. I want everyone, regardless of accidents of birth or circumstance, to be treated with the respect and care I enjoyed, that allowed me, despite all the odds, to be the best person I can be.
Yes. I am aware every day that it is an enormous privilege to live in a country that values me, keeps me alive, encourages my voice and allows me some comfort. Unlike some, I find it squeamishly hard to see any of that as a "right" when most of the world starves and suffers.
That was the value of our welfare state. For every 1 scrounger story there are 1,000 like mine. For every NHS failure, there are 1,000 successes. And here we are. Blogging and tweeting and telling our stories. Not waving but drowning, trying to warn you all not to throw it all away.
You've kept me alive, in dignity and (globally speaking) comfort in the understanding that if, one day, that headache turns out to be a brain tumour or that skiing or rugby accident means you never walk again, every last "taxpayer" knows that in a little way, it's them too. By keeping you alive, they keep themselves alive. Maybe. One day.
Isn't that worth fighting for?
I am lucky. I am privileged. I am blessed.
Sometimes I think I'm so lucky, I worry it can't possibly last. I was born in the top 1% of all lucky, into one of the richest areas of the richest countries on the planet. Though "poor" here, I always realised (we were the Band Aid generation....) that my poverty was incredibly relative. I was born to loving parents who encouraged and inspired me to be the very best I could be. I met that special soul wating just for me, to love and cherish me for richer or for poorer, in sickness and in health. I have 2 healthy, bright, funny children. I live in a beautiful home in a beautiful tree lined avenue. I have enough to get by with a little more than I fundamentally need to survive. I went to university despite poverty. I've travelled. My husband works in a stable job.
But I'm luckier even than that. Luckier than most of you. Because I'm sick. If I lived almost anywhere else on the planet, I'd have died when I was nine and my tonsils sent me into toxic shock, long before I ever developed Crohn's disease. Then, I'd have died when I was 16 and my first real Crohn's crisis took hold. Then, if by some miracle I'd survived those little deaths, I'd have certainly died at 21 when my bowerl burst under the strain of a 12 inch abscess, rotting my appendix clean away.
Almost everywhere else on the planet, if I HAD survived any of those events, broken and septic, I'd have almost certainly been disowned or abandoned or left to beg on the streets.
But I live in a country - so prosperous and privileged - that developed beyond the point of living to eat, to be able to live to care. We decided long ago that people like me were as valid as everyone else.We signed up to the UN principle that all people - broken or whole - had the right to a home, to live independently free from persecution. We're the only country in the world that doesn't discriminate on provision of healthcare in any way. Say it again? Every time it makes me proud.
And so onto privilege. I am uniquely privileged. I live in a country where I can speak freely. I have countless opportunities to express myself and the freedom to know that others will be free to listen and read if they choose. I am kept alive in comparative comfort and enabled to parcipate in society in a million different ways. Members of the Spartacus Network changed the debate on social security from their beds, proving no-one but no-one is barred from taking part in our society. The government I oppose keep me alive to do so. That's almost miraculous by global standards, but we forget.
In return for the compassionate support of a country I love, I have given years of my life and thousands of hours of my time trying to make this privileged corner of our planet even better. I'm no saint, I won't list how here, but I've tried to give back as much as I've taken in as many ways as I can whenever the opportuniy offered itself. I sort of made it my "job".
So when some sneer about "welfare campaigners" or imply that defending basic human rights is somehow "degrading", perhaps this post explains why I fight so hard for what they see as a demeaning status quo. Call it "welfare" if you like, dream of Halcyian fields where perfect access and an end to all prejudice makes social security unnecessary.
But we had it right. A lot of it at least. We did a good job. Of course there would always be new steps forward to take, but on the whole, we weren't moving backwards and hadn't been for some time. We were making progress every day towards the inclusion and acceptance of those living with illnesses and impairments. People like me. I want everyone, regardless of accidents of birth or circumstance, to be treated with the respect and care I enjoyed, that allowed me, despite all the odds, to be the best person I can be.
Yes. I am aware every day that it is an enormous privilege to live in a country that values me, keeps me alive, encourages my voice and allows me some comfort. Unlike some, I find it squeamishly hard to see any of that as a "right" when most of the world starves and suffers.
That was the value of our welfare state. For every 1 scrounger story there are 1,000 like mine. For every NHS failure, there are 1,000 successes. And here we are. Blogging and tweeting and telling our stories. Not waving but drowning, trying to warn you all not to throw it all away.
You've kept me alive, in dignity and (globally speaking) comfort in the understanding that if, one day, that headache turns out to be a brain tumour or that skiing or rugby accident means you never walk again, every last "taxpayer" knows that in a little way, it's them too. By keeping you alive, they keep themselves alive. Maybe. One day.
Isn't that worth fighting for?
Benefit Street
Not for the first time, I was woken up by a researcher for the Nick Ferrari show on LBC this morning.
The last time, I was in hospital and had to lock myself in a bathroom so that the 10 minute radio ding-dong that followed wouldn't be interrupted by loaded syringes or well intentioned enemas. This morning, woolly and tea-less, I waited on the line for 10 minutes while Nick gently led a caller on disability benefit to "admit" that 2 of his 5 children were born after the accident that disabled him. No ding-dongs needed there. Just a gentle and seemingly friendly set-up.
Benefit Street, the new Channel 4 documentary about a street in Birmingham where many of the residents "live on benefits" has been causing tsunamis of horror on my twitter timeline and beyond. Yesterday, I thought I'd better see for myself and watched it on catch up.
I waited for the familiar rage and frustration to surge through me, but as the show developed, I found myself fascinated.
Firstly, I ought to say that I grew up on a council estate. I've seen many complaints that those against the show are "champagne socialists" with no mandate to speak, so before we go any further, I thought I'd make it clear that I at least speak from a position of some experience.
Has anything really changed today? Are the people living on "James Turner St" in Birmingham really so
different to the neighbours I grew up with? Are we living in the middle of a benefit free-for-all, unprecendented in modern times, or is human life simply as varied and colourful as it always was?
There are 99 houses on "Benefit Street". The first episode of the series touched on the residents of perhaps 5 or 6. How many of the other residents are pensioners? Pensioners "live on benefits" but I imagine few viewers would question their receipt. Surely, in nearly 100 houses, someone is hidden away behind those closed curtains Osborne so detests, bedridden and afraid, wondering how on earth they will pay the bedroom tax? It's all selective.
The resident that caused the real outrage was a shoplifter, (Danny) in and out of jail on an almost weekly basis, unrepentant and drinking tinnies at lunchtime in the weak Birmingham sunshine. Mr Ferrari I assume, wanted me to defend him - who would? He was an utter scally with no redeeming features or mitigating circumstances. But there were other characters. "White Dee" the Mummy figure, patiently trying to steer the less fortunate through a new landscape of fear and uncertainty. "Smoggy" went door to door selling 50p "shots" of basic necessities to those unable to afford a whole box of washing powder or sugar or coffee. An impressively entrepreneurial idea showing the determination and resilience of many faced with a life lacking the advantages of, say, a government minister.
So was the road I grew up on so very different to James Turner St? I doubt it. We all knew the scally selling knock-off trainers or dodgy TVs. We all knew the "dealer" and steered well clear. We all knew about the scary guy with a boot full of weapons or the family so unable to cope with the basics of life that their home needed fumigating every few years.
But most worked. Back in the 70s and 80s social housing was there for all. I lived in a community, all human life was there, not just the pretty airbrushed bits. There were a few who didn't work who had no reason not to and they were shunned by the many who did. Lower even than the scallies. (Though not the dealer)
The sad bit about the programme was the lack of balance. I could have made an identical programme in the 80s (well, apart from the fact I was in primary school) if I'd chosen to. I could have igonred the pensioners and those with serious illnesses or disabilities. I could have ignored the single parent only plunged into tough times by the death of a partner. I could have ignored the asylum seeker working all the hours God sends to try to find a job and leave the horrors of massacre and torture far behind them.
But Channel 4 did just that. At least in the first episode - maybe the next four will do better. They chose the scally and the drug addict and the benefit cheats. However, I think the reason I didn't feel the rage many others did was that they also showed the "White Dees" and the "Smoggys".
I wonder whether some of the outrage over the programme actually belied prejudice from those who no doubt, believe they only want to defend and support those less fortunate than themselves? Weren't some of the leftie screamers as guilty of selective viewing as the right wing frothers and spitters? Wasn't it rather easy to say "Ah, you only portrayed the scum" when firstly, that wasn't true and secondly, that very attitude reinforces the idea of "scum" or a "deserving" and undeserving" poor? Would it not have been more valuable to wonder and ponder? How did the shoplifter Danny become who he was? What pushed the young couple with small children into benefit fraud in the first place? Was "Fungi" a useless waste of air or a vulnerable fool easily led by what he saw as a "glamorous" crook? Why did the shoplifter believe prison was only slightly less desirable than "home"?
By screaming in horror, did some not just play straight into the hands of bigots? Were the residents of James Turner St really any different to any poor area throughout history? Were there no professional beggars in Roman times? No thieves in Tudor times? Was Fagin just a product of Dicken's febrile imagination?
Surely the real issue is that streets like the one I grew up in are gone forever? We sold the nicest homes and herded the unfortunate or undesirable into ever smaller ghettoes of misery and failure. No role models to support and guide (which makes White Dee even more remarkable) no-one to live up to, only others as unfortunate as the next to look down upon and judge?
For me, the most revealing part of Benefit Street was watching the reactions of some viewers trying to pretend that all people are equal, living in their own near-perfect image. They're not and they never have been. Who was "helping" the shoplifter to break his destructive cycle? Who was guiding Fungi to get well other than the saintly Dee? Where was all this support promised by successive governments to break destructive cycles?
If you take a group of people with nothing - and I don't just mean materially. I mean people with no hope, little education, broken homes and no opportunities and simply take away the money they rely on to live, has our country really become so stupid thast they don't realise that some of those people will commit crimes rather than watch their children starve? Even less palatable, that some will commit crimes just for the fun and ease of it? It's happened all through history, why would today be any different?
For me, the lasting thought that echoed through my mind long after the programme finished was the impression that making people starve was no more likely to breed "moral fibre" and "bootstrap striving" than it ever was. The "help and support" we're promised - as ever - is still a million miles from James Turner Street. I expect more howls of outrage as crime soars and homelessness explodes, but none of the underlying causes will be addressed any more than they ever were. The Smoggys will claw their way to better times, just as they always have and the Dannys will rob their way in and out of jail, just as they always have.
The only difference now is that it's their turn to be front and centre in the "Freak Show" of history that well meaning lefties and bigoted righties would rather pretend never existed.
The last time, I was in hospital and had to lock myself in a bathroom so that the 10 minute radio ding-dong that followed wouldn't be interrupted by loaded syringes or well intentioned enemas. This morning, woolly and tea-less, I waited on the line for 10 minutes while Nick gently led a caller on disability benefit to "admit" that 2 of his 5 children were born after the accident that disabled him. No ding-dongs needed there. Just a gentle and seemingly friendly set-up.
Benefit Street, the new Channel 4 documentary about a street in Birmingham where many of the residents "live on benefits" has been causing tsunamis of horror on my twitter timeline and beyond. Yesterday, I thought I'd better see for myself and watched it on catch up.
I waited for the familiar rage and frustration to surge through me, but as the show developed, I found myself fascinated.
Firstly, I ought to say that I grew up on a council estate. I've seen many complaints that those against the show are "champagne socialists" with no mandate to speak, so before we go any further, I thought I'd make it clear that I at least speak from a position of some experience.
Has anything really changed today? Are the people living on "James Turner St" in Birmingham really so
different to the neighbours I grew up with? Are we living in the middle of a benefit free-for-all, unprecendented in modern times, or is human life simply as varied and colourful as it always was?
There are 99 houses on "Benefit Street". The first episode of the series touched on the residents of perhaps 5 or 6. How many of the other residents are pensioners? Pensioners "live on benefits" but I imagine few viewers would question their receipt. Surely, in nearly 100 houses, someone is hidden away behind those closed curtains Osborne so detests, bedridden and afraid, wondering how on earth they will pay the bedroom tax? It's all selective.
The resident that caused the real outrage was a shoplifter, (Danny) in and out of jail on an almost weekly basis, unrepentant and drinking tinnies at lunchtime in the weak Birmingham sunshine. Mr Ferrari I assume, wanted me to defend him - who would? He was an utter scally with no redeeming features or mitigating circumstances. But there were other characters. "White Dee" the Mummy figure, patiently trying to steer the less fortunate through a new landscape of fear and uncertainty. "Smoggy" went door to door selling 50p "shots" of basic necessities to those unable to afford a whole box of washing powder or sugar or coffee. An impressively entrepreneurial idea showing the determination and resilience of many faced with a life lacking the advantages of, say, a government minister.
So was the road I grew up on so very different to James Turner St? I doubt it. We all knew the scally selling knock-off trainers or dodgy TVs. We all knew the "dealer" and steered well clear. We all knew about the scary guy with a boot full of weapons or the family so unable to cope with the basics of life that their home needed fumigating every few years.
But most worked. Back in the 70s and 80s social housing was there for all. I lived in a community, all human life was there, not just the pretty airbrushed bits. There were a few who didn't work who had no reason not to and they were shunned by the many who did. Lower even than the scallies. (Though not the dealer)
The sad bit about the programme was the lack of balance. I could have made an identical programme in the 80s (well, apart from the fact I was in primary school) if I'd chosen to. I could have igonred the pensioners and those with serious illnesses or disabilities. I could have ignored the single parent only plunged into tough times by the death of a partner. I could have ignored the asylum seeker working all the hours God sends to try to find a job and leave the horrors of massacre and torture far behind them.
But Channel 4 did just that. At least in the first episode - maybe the next four will do better. They chose the scally and the drug addict and the benefit cheats. However, I think the reason I didn't feel the rage many others did was that they also showed the "White Dees" and the "Smoggys".
I wonder whether some of the outrage over the programme actually belied prejudice from those who no doubt, believe they only want to defend and support those less fortunate than themselves? Weren't some of the leftie screamers as guilty of selective viewing as the right wing frothers and spitters? Wasn't it rather easy to say "Ah, you only portrayed the scum" when firstly, that wasn't true and secondly, that very attitude reinforces the idea of "scum" or a "deserving" and undeserving" poor? Would it not have been more valuable to wonder and ponder? How did the shoplifter Danny become who he was? What pushed the young couple with small children into benefit fraud in the first place? Was "Fungi" a useless waste of air or a vulnerable fool easily led by what he saw as a "glamorous" crook? Why did the shoplifter believe prison was only slightly less desirable than "home"?
By screaming in horror, did some not just play straight into the hands of bigots? Were the residents of James Turner St really any different to any poor area throughout history? Were there no professional beggars in Roman times? No thieves in Tudor times? Was Fagin just a product of Dicken's febrile imagination?
Surely the real issue is that streets like the one I grew up in are gone forever? We sold the nicest homes and herded the unfortunate or undesirable into ever smaller ghettoes of misery and failure. No role models to support and guide (which makes White Dee even more remarkable) no-one to live up to, only others as unfortunate as the next to look down upon and judge?
For me, the most revealing part of Benefit Street was watching the reactions of some viewers trying to pretend that all people are equal, living in their own near-perfect image. They're not and they never have been. Who was "helping" the shoplifter to break his destructive cycle? Who was guiding Fungi to get well other than the saintly Dee? Where was all this support promised by successive governments to break destructive cycles?
If you take a group of people with nothing - and I don't just mean materially. I mean people with no hope, little education, broken homes and no opportunities and simply take away the money they rely on to live, has our country really become so stupid thast they don't realise that some of those people will commit crimes rather than watch their children starve? Even less palatable, that some will commit crimes just for the fun and ease of it? It's happened all through history, why would today be any different?
For me, the lasting thought that echoed through my mind long after the programme finished was the impression that making people starve was no more likely to breed "moral fibre" and "bootstrap striving" than it ever was. The "help and support" we're promised - as ever - is still a million miles from James Turner Street. I expect more howls of outrage as crime soars and homelessness explodes, but none of the underlying causes will be addressed any more than they ever were. The Smoggys will claw their way to better times, just as they always have and the Dannys will rob their way in and out of jail, just as they always have.
The only difference now is that it's their turn to be front and centre in the "Freak Show" of history that well meaning lefties and bigoted righties would rather pretend never existed.
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.
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.
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