Dear Andrew Marr
On the Marr show this morning you said you had "a greater understanding of disability" since your stroke. Yet when the story was mentioned that Ian Duncan Smith is thinking of getting rid of the Work Related Activity Group of ESA, the group that is supposed to help people back into work when they get instantly and terrifyingly sick, just as you did, you barely flickered a benevolent eyebrow.
What you actually meant was that you have a greater understanding of disability for wealthy people.
I wonder, has anyone talked you through what would have happened if you had been poor? Had you not enjoyed the great good fortune and success that you have? Immediately, I imagine a part of you just bridled - "Good fortune? My success is down to hard work and determination." But refuse collectors work hard, nurses are determined.
Just for a moment, humour me and imagine you were working for minimum wage in the local factory. You worked there for years. But you have no official contract and hours can be patchy over winter. Your wife works too, but between you, you don't earn enough to pay the bills. You get tax credits and a little housing benefit to make up the shortfall. You're still 54.
That morning you woke up on the floor would have been just as terrifying. The precious candle flame of immortality would have blown and guttered, just the same. The look on your wife's face would have been just as frozen with fear and the dazzling blue lights just as disorientating.
When you got to the hospital, the care would have been the same. Thanks to our wonderful NHS, worry and fear would have been contained in the instant. Will they make me better? Will I live? Will I walk again? Will I work again?
But you would fear for your family - how will they eat if I can't work? Will there be a job if I do recover? How will I pay the rent?
For those first few insecure days those fears would have hovered in the background, pushed aside by the fight for simple, vital life. But soon, as the days wore on, the luxury of self absorbed terror would have lifted. Practicality would start to matter just as much as survival.
And so, your wife would have arrived at the hospital one morning with a clutch of forms. Endless, confusing, demanding forms. 20, 30, 40 pages long. Forms for employment and support allowance. Forms for housing assistance. Forms for care. Between you, through clouds of fear, you would have started to fill them in, agonisingly, nervously, a sense of guilt and failure hanging heavy in the room.
After days of wondering which words they want to hear, what magic keys might unlock a door to security and support, together, you would have sent off the forms and waited an anxious wait. Much as you would have been hoping you would be Andrew Marr again, more, you would have wondered if your wife and children would get through this crisis without hiding the gas bills from you and eating simple, joyless meals in the kitchen while you sat in bed oblivious with the best they could give you, praying a little nutrition would speed you back to join them.
The claim comes back and they tell you they will consider it. They will pay you £71.70 per week - not nearly enough to cover the bills. You worry even more. But months pass. You spend them gritting your teeth, just as I'm sure you did, fighting with every last ounce of will to be the Andrew you left in bed that fateful night before your world turned upside down.
Time drags on and on and still you hear nothing. Your wife sells the car, then cashes in a little savings scheme you had set up for your funerals. But it's never enough. The bills keep flooding in and the money keeps flooding out and you still can't walk across the room or speak clearly. There are days of anger, fury that after all the years you worked, now you are left to pick up the pieces of your life alone.
When that brown envelope finally falls through the door, it tells you that your claim has been "successful". You have been placed in the Work Related Activity Group. Letters explain that you are expected to work again at some point, and as such, you will receive £100.15 per week, but you will be expected to attend "Work focussed interviews". The letter is stark. If you don't attend, you could lose your benefits. If you don't do all you can to get better, you will lose your benefits. If you don't return forms on time or jump through whichever hoops the agency feel are appropriate you will lose your benefits.
You want to scream. You want to shake someone until their teeth rattle. "I HAD A STROKE" you want to shout. My life was turned upside down! I'm doing all I can to be Andrew again. If I could turn back the clock to that night, not do so much exercise, not eat so much of that rich sauce, not drink that strong coffee. But I can't. I didn't ask for this to happen, I've never been off work in my life. Why is it all so hard? Why do I feel such a failure? But most of all, don't they realise of course I'm doing all I can to get better? Of course I want to walk again and talk again and play with my children?
It's six months now since you woke up on the floor, helpless and confused. You can walk a little, slowly. You can make yourself understood. But your wife has lost weight. You can see it every day as she cares for you, lifting and dressing and washing, as she cares for the children all alone, as she rushes from one job to the next, desperate to keep the family together.
You call your old boss. "Can I come back?" But he says you're just not ready. His insurance won't cover you. He can't afford you there if you can't do the job.
The work related activity begins. The letter says you must attend a centre right across town. It takes 40 minutes on the bus. You can't get there. You certainly can't afford a taxi and your wife sold the car weeks ago. You phone them to explain, but they say rules are rules. Whatever the rules, you can't get there. The next letter explains that you have been sanctioned. You will lose all of your support for two weeks. Again, you want to scream "BUT I HAD A STROKE!! I CAN'T WALK!
Your wife sells the x-box and the kid's bikes. You can hear them downstairs, angry and resentful, they don't understand why they have to suffer because Daddy got ill. You cry quietly upstairs terrified someone will come in the room, but unable to hide away.
After 7 months, exhausted and ashamed, you go back to work. You're not ready. The doctors say you shouldn't go back, the physio says you need more time. But there is no more time. Time has run out. If you don't go back to work you'll be evicted and you simply can't let that happen.
This is the reality of life in the UK today if you happen to be poor and random life throws you into crisis. Still you might not believe me. You might say I'm exaggerating, that no system could possibly work the way I just explained in a developed democracy. A part of you might allow yourself to think you tried harder, you're stroke was worse. You didn't and it wasn't
You simply had the cushion of a comfortable life propping you up. Without that cushion, you would have been astonished, appalled by how you were treated. Your view of being disabled in the UK today would have been very, very different.
Finally, just in case I made you think, even a bit, imagine there was no wife. There were no children. No family or friends close by. Who would have washed you and fed you and encouraged you then? Who would have filled in the forms and kept things afloat while you dribbled and hobbled your way back to health?
If you think the answer is the state, think again. And if you think you know what the vast majority of sick and disabled people go through, think again.
All you had to do was concentrate on getting better.
I thank God that you are and for the care and support you had to get there. But perhaps, now and then, you could read the odd article about how it might have been very, very different.
http://www.stroke.org.uk/news/working-stroke-survivors-struggle-most-make-ends-meet Stroke survivors struggle to make ends meet on ESA
http://www.derbytelegraph.co.uk/Hundreds-Derbyshire-win-victory-sickness-benefits/story-16337459-detail/story.html Derbyshire stroke victim wins victory in benefits protest. ....
http://www.theguardian.com/society/2012/may/29/benefits-system-fit-for-work "following a severe stroke, Jan Morgan was shocked at how she was treated by the benefits system....
Update : When a post goes viral, you think of the one thing you should have said.
I had a stroke. Luckily, it turned out to be a TIA - a trasnsient ischaemic attack. A stroke that fades away with little effect. I have the most imperceptible left sided weakness from it. If you look at a picture of me, you'll see my smile lifts a little less on the left than the right.
But for 30 minutes, I went totally blind, lost the power of speech, became totally paralysed down one side and I had no idea if it would last or pass. I was locked away in myself for 15 of those 30 minutes, absolutely knowing that I was having a stroke. Mentally, functioning exactly as always, but unable to express myself in any way. It was without doubt the scariest 30 minutes in an otherwise fairly grade A scary life.
Please with just a few days to go, would you all sign the WOW petition http://wowpetition.com/ and share it amongst your friends and family
Absolutely brilliant so true. I only hope he reads it and actually tries to imagine the real world our world. Perhaps if he reads and studies this he may get close to an idea. But to be fare he will never ever live in real fear like most of us wondering when the next assessment takes away our last few pounds and we can not walk to the nearest food bank and starve to death in a country now designed for the rich.ReplyDelete
I'm moved to tears Sue! I too hope Andrew Marr actually reads this, but I expect he is too insulated from the reality of how life is for most of us, how the misfortune of an accident or illness can, since the changes to benefit system, threaten our very lives before we have had a chance to start to recover.ReplyDelete
My wish is that everyone reads this and realises that there is no hyperbole here. it is terribly, terribly sad, but also reality.
Beautifully written post x
Well said. It is difficult to see how a 'champagne socialist' can have any perception of how difficult life is for the people who do not share the privileges he has enjoyed throughout his life. Mr.Marr has a TV audience and guaranteed publicity, which is more than his bosses at the BBC are willing to grant the millions of victims who currently suffer at the hands of the DWP. We may be misjudging him though. It may be that he will use this platform to raise the forgotten masses into the public gaze. Perhaps it is time for the strongly held political views of his youth to inform his actions now.ReplyDelete
Well. If you are not an invited guest on the Andrew Marr show within a fortnight then there is absolutely no justice. You put the case passionately, coherently and honestly without resorting to any nastiness or vituperativeness. I never cease to admire your skill with words. I just hope eveyone re-tweets this and publicises it wherever possible.ReplyDelete
A wonderful post, written beautifully. I had to look up Andrew Marr as I don't watch TV or listen to the radio, I haven't for years and doubt I ever will. I hope Mr Marr does read this and acts upon it. No-one, but no-one deserves to "live" in such situations.ReplyDelete
Hubby and I are both disabled but due to the changes in ESA (hubby is in the Support group), I will be called soon to see if I can go to work. I wonder what will be said as I get wheeled into the Jobcentre with only one leg, crippled everywhere else with arthritis, needing a knee replacement, needing my hips done, needing both of my hands put in one position, suffering with mental health due to having my amputation because an arrogant surgeons error? They'll probably say that I can still work when there is not a hope in hell of that ever happening!
Thumbs up to infinity.ReplyDelete
There is one law for them upstairs. And a completely different unfair law for those of us on benefits. Maybe the rich/wealthy should certainly see that we can shut down their vile and evil system.ReplyDelete
Thought provoking and moving letter, need more of these voices heard.ReplyDelete
No surprise really. Andrew Marr has always been an obsequious fool. His wife Jacqueline, is the daughter of Jack Ashby, Baron Ashby of Stoke, a former life peer and Labour MP. I guess he just doesn't understand how fortunate he is in life. It's a bit like Theresa May having type 1 diabetes. She hasn't exactly called for an increase in sickness benefit allowance!ReplyDelete
Andew Marr is a Tory and most likely takes back handers from his friend George Osborne every time he uses a Tory sound bites or narrative in his questioning of the opposition ie you can not reduce the deficit by spending more or Oh my god Ed balls you had a structural deficit , OMG you had the biggest deficit by overspending - word for word tory sound bites are you suprised he does not understand the problems normal disabled people have. Does mention the 164000 disabled deaths caused by IDS stopping their benefits?ReplyDelete
Andrew marr is a Tory for sure but there no way on earth he will read thisDelete
if he was educated he would already know the pitfalls of welfare but welfare does not apply to his family so there is no way he can pass judgement and that goes for everyone who uses private facilities
ramesh i think you mean 16400 deaths which is not far off the mark but that figure will be ongoing and the true death toll will not be known for at least 30 years and only then if someone from the younger generation wants to persue via the UN which i doubt very much
the cost is vast and only could be coincided by the government of the day the same as in the hillsbrough disaster and that took 20 odd years and is still unfinished business
IDS is riding high at this time and as i have said he will go on to destroy as many lives as possible as he has always stated a life on benefit is not a life
There is a link between illness and poverty - Marr relying on his substantial savings whilst he recovered is not the same as someone having to sell their house and attend endless atos assessments. (I do not wish to belittle the severity of a stroke, but he really is talking out of his overpaid backside).ReplyDelete
This seems to ring so many bells for the life that my disabled partner and I have to live.ReplyDelete
It's like a history of the last 12 months for us, right down to the brown letters falling on the doormat, oh how they make us break into cold sweats.
Thank goodness we are able to scrape by month by month, but it really feels bleak sometimes and this sums up how disconnected the likes of Marr really are.
Really well argued and written with passion and belief.ReplyDelete
Who can say whether Marr will read it or understand it, but it's vital we keep on pointing out the iniquity of this foul Tory government and the lies they sell in their demolition of the NHS
awell written post sue marsh but wonder like the farmer did your seed fall on barran land jeff3ReplyDelete
Jeff; good point mate. I have put the link on another blog and hopefully because that gets masses of hits every day this will get a much wider audience. The website in question is here anyway: http://agirlcalledjack.com/ It's on similar themes to this one.Delete
Marr means well, but he is another rather affluent and rather privileged Middle class London wine bar socialist or that's the impression I get from him. He has to sing from the hymnsheet of all who get prominent positions on TV and who become wealthy in the process. To be wealthy and famous and to be in that world of the media, a person has to be right of centre, or be careful about any genuine concerns for the way this society has turned now. Those who are making money and are affluent at this moment don't care that many other people are living in poverty or going hungry or literally being persecuted to death for being disabled or being a pensioner who can't afford to heat their homes. It is an obscenity almost beyond words. The 'Thatcher Revolution' has finally hit home, and we are all reaping the rewards of that. Some making fortunes or affluent careers and others being further impoverished.
'9 People who long to be rich are a prey to trial; they get trapped into all sorts of foolish and harmful ambitions which plunge people into ruin and destruction. 10 'The love of money is the root of all evils' and there are some who, pursuing it, have wandered away from the faith and so given their souls any number of fatal wounds.' (1 Timothy 6:9-10)
Absolutely brilliant post. How is it that no organisations or charities are saying this? How grateful I am that you are speaking for so many thousands people who live in silent despair. Thank youReplyDelete
Catherine. I share your concern here. Do you know why? Because many equality organisations and charities are now filled with affluent Middle class people who are more in tune with the rich and the powerful rather than the people they are supposed to be helping, and charity is now unfortunately becoming a business rather than a means to an end. If you want, check out some of the equality organisations and notice that, rather strangely, they never mention class as an issue, which leads me to think that class isn't an issue to them being that they are all rather comfy Middle class folk. Yes I am concerned that the media and charities and such like are almost silent about this, but again what sort of people run society?Delete
Andrew Marr was a socialist when he was a young man. He claims himself to have been a raving lefty according to Wikipedia .Isn't he married to a New Labour Guardian Journalist.ReplyDelete
Once they have got money, they soon become judgemental, arrogant.
and right wing when it comes to welfare. They Live in a different world now. The BBC with New Labour Purnell ex DWP Minister employed at the organisation are never going to stand up for the voiceless on welfare.
Very few understand what is really happening with welfare reform. The politicians and their cronies prefer it that way.
my daughter has been doing an internship for 2 top charities this past year and can conform they are big business only which ties in on my own personal involvement many years ago and even then they were for business personal only paying very high wagesReplyDelete
Even Ester McVey spoke out against this and I personally will have been on ESA (WRAG) for 5 years after this period ends. This time they got over 120 pages of medical evidence with the ESA50 and told in no uncertain term I would be audio recording. Last night I wrote to my MP and ask that he demand that Iain Duncan Smith be removed from his post, that was to a Labour MP who is a closet Tory.ReplyDelete
Most people in work, whether they are low or high earners, will have no idea just how complex the claims process is, nor how lengthy the wait for a decision and finally, how long they will wait for payment after a decision has been made. They will BELIEVE that the welfare state they have contributed to, all their working life in most cases, will support them in their time of need.ReplyDelete
This poignant and beautifully written letter may not be read by Andrew Marr, but will be read by many others to whom it will be news.
Your post is very well. Farming is in our genetic. If we leave farming agency feel are appropriate we will lose our benefits.ReplyDelete
Having been through a large proportion of this "reality" of life with a huge life changing illness I had some 15 years ago this brought tears to my eyes as I remembered all I had so nearly lost. Living through this poor and single was probably the most frightening time of my life, more terrifying than the time I was attacked by a drunk with a knife on the streets. More life threatening than that time I was within two feet of being hit by a speeding white van as a cyclist.ReplyDelete
Thank you for your dose of real life that so many of those "in control" have no idea of, and sadly never will.
Sue - I have been reading your stuff for a while and in a mountain of gems , this is huge! Beautiful and empathic as ever. I sat here in goosebumps.ReplyDelete
I am not rich, nor on the poverty line. I am deeply grateful never to have had a stroke or serious illness. But I am self employed and I have glimpsed the abyss of not being able to pay bills or make ends meet when work simply was not there. I can only imagine how much more terrifying it must be to have a serious debilitating illness to cope with in addition.
It is so easy to follow suit with the current government and become so 'Us' and 'Them' when really it is just 'we'. I feel so grateful that despite the challenges you face, you still see some humanity in everyone.
I want this open letter to become required reading everywhere! In fact your blog should become a book of essays and distributed to everyone, everywhere!
Thank you for your beauty and your grace.
Sue, a suggestion I've posted at the MediaLens Message Board, copied for you here. Hope this is a useful input:ReplyDelete
I missed Marr yesterday, I've always admired him without necessarily agreeing with him, especially since his stroke. BUT...your words ring so true. If you're fortunate enough to have things in place, if life has offered you the right opportunities, if your parents had been able to afford to get you through the best education, it's going to be much easier. Yes he can sympathise with disability, in the impact on life it has, on the gargantuan effort it takes to get back to some semblance of what you were before, but no he cannot sympathise, empathise or even align his own situation with that of the majority of poorer disabled people.ReplyDelete
My partner has suffered (through diabetes) two heart attacks, several TIA's, the last putting him in hospital for a spell, cardio-vascular problems and the loss of a leg. We were never well off in the first place, so we KNOW. Sorry, but Marr doesn't.
it was only possible for him to recover in the first place because he was private those who are best placed to survive a stroke are those using private facilities at over £1000 per dayReplyDelete
had he used our local NHS hospital he would have had a tough time at best because of over crowding. all of these so called reporters are in reality just a bit thick in my eyes they never know how to ask the right question in the first place and as they never do any research beforehand they always end up wonting and looking a fool
This is the exact person/family who should have help while coping with hardship through illness. A year of wages exact to what he had before becoming ill could mean a time to focus on getting better properly and gradually going back to work to build confidence and self esteem . Its 12 months to focus on the future. and to sort out outgoings then after a year review. However maybe companies should not be allowed to employ people on 0 hr contracts. They should run schemes to offer help if its needed maybe through a paye scheme. This would top up what the welfare state would pay.??ReplyDelete
My stroke was in the form of a brain haemorrhage, and it is a certain fact that going back to work two and a half years later was still too soon, the heart attack was testament to that. But there comes a time when you have to. Mr Marr doesn't understand that, and it's a certainty that IDS and his ilk don't really care.ReplyDelete
My wife saw a disabled man in town yesterday, sitting in his wheelchair. She passed him going into a shop and when returning out, she spoke to him. He said he was hungry, so she bought him a sandwich and a cup of coffee. He was very grateful. I know this is not on topic, but just wanted to relate to you. He wasn't begging, but was down on his luck. He wouldn't have to worry about food, if the welfare system was working correctly. xReplyDelete
Bristol woman "killed herself after benefits were stopped" this news just inReplyDelete
This is a brilliant post! It says it as it is and I hope that it is seen by the right people.ReplyDelete
It is Kaz. We are all the right people, but some just don't know it yet! ;~)Delete
I found this so eloquent that I have sent an email to both the Editor of the Guardian and Andrew Marr at the Guardian. Hopefully they'll both read it… it's good to give them a different perspective.ReplyDelete
I was watching The Wright Stuff this morning. One of the panellists was Katie Hopkins. As usual, she was doing her Hired Mouth bit; denigrating people with real problems and telling them to 'stop whining and just get on with it'. She talked like a person who'd had never had to endure a day-- nay, a moment's-- hardship. Then it struck me that she probably never had. She, like Andrew Marr, had probably led a charmed life, where her only hardships were whether to wear her green dress to work or her blue one. She had no comprehension of how difficult other peoples' lives were, because she herself has probably never had a difficult life, and so she sneered at them. I know it's completely off topic, but Marr seems one of those people who thinks he knows what it's like to have a disability or illness, when he really doesn't; he knows what it's like to have a difficult health issue, but his life is too charmed to really know what it's like to have an ongoing health issue while living in poverty and fear of your last morsel of support being taken away. It's more often the Charmed Lifers who end up being mouthpieces for people and situations they know little about, who bear no relation to them. I wish the Katie Hopkinses and Andrew Marrs of this world would just stop and think about the potential damage they do to the rest of us who don't have their privileges.ReplyDelete
This is exactly the problem with our country the haves can pay for all the support that can be offered and the have nots can only rely on the state, and that is being taken away bit by bit. People like Andrew Marr will still have the same views as they did before because they have not relied on the state to support them. But they will still crave the sympathy that all sufferes deserve while decrying the people less fortunate. One word describes them, Hypocrites.ReplyDelete
brilliant letter at so many levels. eight years after the stroke I still suffer from aphasia. cant understand what people are saying, having to ask what is said repeated slowly etc. I had some savings so awarded £13 a week. I was fortunate. Marr priveleged. He wont read the letter.ReplyDelete
Not even classed as disabled in any way but with depression and mobility problems exacerbated by congenital spinal deformity, jobs are hard to find maybe non existent that I was able to do. Struggling on on JSA and trying hard to stay balanced enough to avoid suicide, which seems increasingly to be the only way to escape the humiliating futility, misery and degradation of being a claimant under this government. Having filled in a jobseekers agreement to apply for 2 jobs minimum a week, we are now handed a form to fill in that has 8 slots per week and they expect you to fill them all. Every week the forms become more numerous and complicated.. It's only a matter of time before the whole experience becomes intolerable. And all this for just £35 a week out of my JSA now that I have to pay room tax and Housing Benefit too out of the sum that was originally never intended to cover those costs. I got turned down for the help with that... The hurdles and hoops you have to jump through are becoming higher and higher and more solid and wall like week on week. Eventually, they may as well just hand out the old rope, since there will be no money allocated to support the poor and sickReplyDelete
His father-in-law was Jack Ashley. If he didn't understand disability before, what makes anyone think he will now?ReplyDelete
There has been some wretched useless spam on this topic since November last year. This stupidity does a great disservice to Sue Marsh, whose original open letter to Andrew Marr deserves to be read widely and reposted by everyone who sees it.ReplyDelete
I hope a moderator comes along and removes all the awful rubbish posted since the end of November.
Meanwhile I will share this extraordinary blog.
Powerful and hard hitting article, a snapshot of the lives of some of the folk in the UK today sadly IDS and George Osborne want to make it even tougher for them.ReplyDelete
The whole bloody system is wrong. Why do you need to jump through all the hoops to get a pittance of benefit? Tell me something: I just claimed carer's allowance and income support to look after my parent, I will get only £106 odd a week, this is for looking after someone for over 35 hours a week, is it right that I only get £106.85 a week? Shouldn't it be at least £227 a week? It would be if I was a private carer getting NMW. This isn't right. If anything it should be £72.40 income support, £34.20 carer's premium and £61.35 carer's allowance. Should be getting £167.95 a week but they take off the carer's allowance off the income support so all I get is £61.35 + £45.50 a week total. Not bloody right.ReplyDelete
BBC has become as Tory propaganda as Sky News since the Tories threatened to reduce funding. What I want to know is if the BBC is funded for by the licence fee, then what are the Tories planning on spending the licence fee on if not the BBC?ReplyDelete
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