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How many more disabled people will die frightened that their benefits will be taken away?

Karen Sherlock faced endless pressure, the judgement of society, the fear of destitution, the exhaustion of constant assessments and endless forms - all as she battled to survive.

Karen Sherlock's Twitter page.
Karen Sherlock's Twitter page.

I’m a disability campaigner. I’m not sure I ever set out to be – indeed that anyone does – but that is what I became.

You may have read some of the reasons here. Perhaps you’ve skimmed a few articles on ESA - the Employment & Support Allowance - tutted a shocked tut at cancer patients on chemotherapy sent to the job centre to find work. Perhaps you’ve sat open mouthed at the idea of one of the richest nations on earth arguing over just how terminally ill you need to be to get the gracious sum of £96 per week to survive with at least some dignity.

Maybe you heard that this government believes that for almost all conditions, one year is now considered enough to find work. You may have heard Chris Grayling, the Work and Pensions minister, tell you that it doesn’t matter whether people are better, or if they have found work, we simply can’t afford them any more. Their benefits will be stopped if they have a partner who earns just £7,500 a year or more.

You may have heard of this blind, deaf, tube-fed, non verbal, disabled man deemed fit for work by the DWP, or Jan Morgan, unable to look after herself after a severe stroke yet also told she must seek work. You may have heard of very many others. You may even have found these stories hard to believe. I’m not sure that I would blame you. For if we believe these stories, where do they leave us? Where do they leave claims that we are “protecting the most vulnerable”?

But today, I want to tell you about Karen Sherlock, because she was my friend.

Karen was extremely unwell. Here, in Karen’s own words are her medical conditions:

DIABETIC AUTONOMIC NEUROPATHY (GASTRIC, CAUSING UNPREDICTABLE AND SEVERE DIARRHOEA)

GASTROPAERESIS (CAUSING UNPREDICTABLE AND SEVERE BOUTS OF VOMITING)

DIABETIC RETINOPATHY, PARTIALLY SIGHTED (LOSS OF PERIPHERAL VISION IN BOTH EYES AND SOME CENTRAL VISION IN LEFT EYE)

HEART CONDITION, CHRONIC KIDNEY DISEASE, VITAMIN B12 DEFICIENCY, ANAEMIA, HIGH BLOOD PRESSURE, HIGH CHOLESTEROL, UNDERACTIVE THYROID, CHRONIC TIREDNESS DUE TO COMBINATION OF MULTIPLE MEDICAL CONDITIONS, ASTHMA

I urge you all to read this post, written by Karen just two months ago. It details a process many of us who are sick or disabled know all too well. Apply for ESA, get “assessed” by Atos, the private company charged with making these life or death decisions, get turned down for ESA, found “fit for work” or put in the wrong group, appeal decision, win tribunal, get a new letter demanding you attend another assessment, repeat the entire process until you despair, ground down by the misery.

My ESA is being stopped……………

Now, I have turned over in my mind how they can do this to me. 

Where it is going to leave us money-wise and what we can do about it? The answer is;  I don’t know. 

I am not entitled to a penny more due to having a husband that works too many hours and brings in too much money. I am worried and frightened, I do not see how they can just snatch this away from me. I am chronically ill and I am never going to get better, not even with the transplant will I feel better, all my conditions cannot be magically cured.

Karen faced all of this as she battled just to survive. Endless pressure, the judgement of society, the fear of destitution, the exhaustion of constant assessments and endless forms. She was one of those who’s ESA was time-limited - and what’s more, it was limited retrospectively, leaving her with just a few months to appeal for long term support.

What I want to tell you today is that she was frightened. Terrified in fact. She was terrified of the DWP, almost paralysed by a fear that if she spoke out, they would treat her even more harshly. But she spoke out regardless.

She was scared for her future, scared for her family. She had no idea how they would survive when she lost the little support they relied on. Her husband works, cares for a sick wife and they had “done the right thing”. Do you hear me Ian Duncan Smith? David Cameron? Nick Clegg? Ed Miliband? Her family had done the “right thing”, at least in your narrow world of workers and shirkers.

Despite her own terror, she tried to tell her country, her peers, her friends - even journalists - what was happening to her and thousands like her, but shocked tuts didn’t save her. Open mouths and disgust didn’t save Karen; they didn’t save my friend. Perhaps no one could have, but those who hold and abuse power could have eased her fear or reassured her that they would act.

Karen died on June 8 from a suspected heart attack. I’ll leave you with her own words, from the end of her final post on April 29:

“We need to be passionate about standing up for our rights, and if we can make enough noise, and get enough people to listen then we can overturn the inhumane changes this parasitic government have made.  If nothing else, we do still have hope and our rights on our side.”

Will we listen? Will Karen’s story be the one to convince us that enough is enough? Or will we turn a blind eye, continue to look away?

I hope not. There are dangerous historical precedents.

Sue Marsh is a writer and disability campaigner. She blogs at DiaryOfABenefitScrounger.blogspot.co.uk

32 comments

Paul Swann's picture

Dispatches, 8pm tonight on C4: Using undercover filming, reporter Jackie Long investigates the controversial processes used to assess whether sickness and disability benefit claimants should be declared fit for work.

Sorry's picture

I'm disabled, and believe all disabled people should die. 90% of us are leeches who give nothing back to the world we just take take take until we die. 10% are actually useful and are in the news. They're fine. Same goes with regular people... a lot of them are useless too and they don't even have disabilities... they should die too. Why do we help the useless... in the end they are all doing it to themselves anyways... besides people who can't help it... but I don't think that's a good enough excuse to live either.

Fraziel1's picture

Again, I repeat, why have the numbers increased ten fold in the last 20 yrs? There are many people making a lifestyle choice to claim sickness benefits, thats why, and they are also far easier to get than before. I deal with them every day and it disgusts me frankly.

I know the left have to oppose every reform going on an ideological basis and that is your problem. You say that there is a campaign to attack the sick and disabled and they are all being treated appallingly but I just do not see that . I really don't.There are far too many people who should be able to work who receive these benefits.

Approx one third going by the governments figures. I am fed up seeing claims from people who say they are unfit to work as they are fat or are depressed at the age of 18. Depressed at the thought of actually having to work for a living many of them. If you are fat, perhaps stop eating massive quantities of crap might help. Until you stop denying the evidence you are nothing but left wing ideologues.

DCarson's picture

> "You say that there is a campaign to attack the sick and disabled and they are all being treated appallingly but I just do not see that ."

You write that under an article that documents a victim of the campaign to attack the sick and disabled who was treated appallingly. Your claim to not see that can only be a result of lying or some pathology in thinking.

Keith Martin of Lancs's picture

It is truly a sad tale. Thoughts must go to the family and kin of Karen. Her brave husband for letting us know and the campaign she fought to see what is right is done. Being ill is stressful enough without the added burden of the withdrawal of financial support. Many are forced into debt to pay for the travel to get treatment and the carers who are at home looking after them. To then having to jump through ever decreasing hoops to get enough money to pay said debts and continue to support families can only affect the prognosis.
There may be a need to update the system, but to go about it by forcing those who have a chronic illness, and one that has been proven by qualified clinicians should not be tested again by a tick box system.
It is a sad indictment on this country and those who run it.

Let Karens god cradle her soul.

Viv Lane's picture

I never thought I would say this, but I am now (almost) ashamed to be British - where is our compassion, where is our thought for people so much worse off than ourselves? We should put ourselves in the position of these unfortunate people, and consider how we would feel in their position with no help and, in a lot of cases,no hope. But no, everyone for themselves these days - how appallingly sad. I am pleased that my parents and their generation, who fought world wars to give us a fairer society, are not here to see what the world (and the land they fought for) has become.

David Kidd's picture

I read your post and I want you to know that it's the same attitude here in the United States...I , me, mine. As long as they have their stuff, to hell with the next guy. This world is a house of cards, and it's going to fall. When it does fall, then people will turn to god. I'm afraid we haven't seen the worst.Take care of yourself, and know that I will pray for you. David---

Robert Taggart's picture

This sounds like a clever way to cut the count - thereby saving the taxpayers a fortune - Smart move !

suey2y's picture

There is a poster from 1930s Germany. It has a picture of a man in a white coat standing behind a man in a wheelchair. The slogan reads : "This defective person will cost YOU the taxpayer 60,000 DMs over his lifetime"

Do you realise that your comment just endorsed a state led eugenics programme? You supported the death of this woman in fear because it might save a few pounds. Do you realise you just answered all the people who ever said "How did it happen? How did the German people just look away?"

And no, Godwin's law does not apply when the analogy is accurate.

Robert Taggart's picture

Whatever became of 'Uncle Adolf' ?!

Fraziel1's picture

The government has to do something to reform the disability benefits as they cost too much and there are far too many people receiving them ( in Glasgow the number of people on incapacity benefit has increased ten fold in the last 20 yrs and we are not getting sicker as a nation, the benefits are becoming a choice and are easy to get). I wonder what the left would have us do? The Status Quo? Not an option, not for a second.

Personally i think the government are being a little harsh but they are on the right track. There will always be stupid decisions made by staff who do not fully grasp all aspects of the process but thats why you can ask for a reconsideration then an appeal where common sense should prevail. I read these stories put out by the left and i know they are few and far between and that the ridiculous decisions rarely stand. The status quo is not an option, What would the left do?

Robert Taggart's picture

The Left would bankrupt Blighty - they always do !...
Attlee - handed out the begging bowl to the US Congress.
Callaghan - went cap in hand to the IMF.
Broon - left us in the 'Broon Stuff' !

suey2y's picture

If there was just one fact in your comment I might bother replying to it. You have been brainwashed sir.

Willingly or unconsciously?

Robert Taggart's picture

Neither - Free-Thinker Moi - try it !

cupcake's picture

And what price would you put on human life? If disability benefits cost too much in your opinion what should we do with all those disabled people who cannot work and have no other means of income?

I think you are confusing incapacity benefits, now being replaced with employment and support allowance with disability living allowance which is to cover the extra costs of living with a disability. Numbers have risen because the population has increased, people with long term conditions are still receiving them and more people have been made aware of them, which is a good thing. More money is lost by administerative error than fraudulent claims. So what factual evidence do you have that too many people are receiving disability benefits? Would it surprise you to learn then that the Department of Work and Pensions own fraud figures show that 99.5% of claims are genuine? Look it up. You'd think that the government would want to be congratulated on so successfully keeping the fraud levels so low. Those that are 'found out' are made to pay the money back. It's a win situation.

This assessment process is a national scandal. There is little difference between the most vulnerable and plain old vulnerable people. Yet people like Karen, who you might think was one of 'the most vulnerable' the government promised to take care of, with chronic conditions that will never improve, are found fit for work or placed in the work related activity group meaning that after 12 months on the benefit they will be means tested, as Karen was. If your partner earns just £7,500 you will lose any entitlement to sickness benefit. This includes people battling with cancer, MS, parkinson's disease, heart failure, chronic mental illness and so many other conditions that would cause huge barriers to entering the workplace.

What people forget is that in vilifying the sick and disabled and believing this campaign of hate towards anyone claiming sickness benefits as is widespread across the tabloid media, that they are cutting their own safety net for when they might need it. People like to think that they are immune from illness, that they won't ever need to use the welfare state which their national insurance contributions have paid for, but they are not! The next victim of the work capability assessment could be you. You might be left wondering why if you haven't got better in a year your money has been stopped and you're asking your wife for pocket money.

Karen did not die in vain. I hope her story will be read and remembered and that it will open up a real informed debate about this so called welfare 'reform' bill. Frankly, there are hundreds of thousands of Karens battling with stress and fear of destitution on top of trying to manage their illnesses on a daily basis. So many with mental distress simply cannot tolerate the added stress and pressure of these continual assessments and appeals which is leading to suicidal despair. Such inhumane treatment of our sick and disabled should be to all of our shame.

Sotonlad's picture

He doesn’t have any factual evidence Cupcake, they never do. All their supposed evidence comes from right wing propaganda, the right wing media and their own prejudices.

I always find myself mildly amused at the idiots who spout this sort of right wing, "all claimants are scroungers" rubbish. As if by magic they all suddenly become fully qualified doctors and highly experienced psychiatrists. The reality is that the "evidence" they so highly praise is taken from whichever right wing rag they purchase, the DWP/ATOS's heavily biased figures (who are hardly going to admit they are making mistakes) and Cameron’s fictitious pandering to their prejudices.

These cuts are going to kill more disabled and mentally ill people, believe me. It’s happening now and this is barely scratching the surface.

Jon Coe's picture

You know little or nothing.

Your assertions are based on nothing but prejudice.

What costs too much are the tax breaks for the rich, the nuclear warheads we have no need for and the subsidies for huge corporations. And the excessive and dishonest expenses claims of our legislators.

A civilised society takes care of those unable to fend for themselves and a little wastage from false claiming is a reasonable price to pay for ensuring that those who need help get it.

DCarson's picture

Well said.

A society is judged on how it treats the most vulnerable. Do we aspire to be more like Sweden or Somalia?

 Lorna's picture

Did you not even read that story? The woman just died after battling through unimagined stress and worry. Any system that causes that degree of stress and harm to someone with serious and chronic illness is inhumane. It's got sod all to do with left or right wing politics. It's about what kind of country we want to be.
A country that devises a system incapable of supporting people through serious illness, and that contributes to making the quality of their already difficult lives, even worse is a country that has lost its way.
I always wonder what kind of people are capable of making the kind of decisions that caused Karen such grief. Then I read posts like yours, with such an empathy bypass and smug self-righteousness and I see the attitude that Karen must have faced. I didn't know her, but I weep for her and the grief her husband must feel.

I salute the campaigning she and others such as Sue Marsh are doing, because its desperately needed.

RIP Karen. Gone but clearly never to be forgotten. I hope your pain is over now

Loft Conversion's picture

It is tragedies like this that make you ask why are the people in power? Are they not supposed to be looking out for us the little people? Or are they just too concerned with their own affairs.

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office domestic cleaners loft conversion IT Recruitment Plumber Milton Keynes

Benjamin Rae's picture

This is the reality people need to be aware of. It isn't about just sorting out malingerers. I've had it with people saying it isn't that bad. It is, and this is happening to lots of people.
It's immoral and not the mark of a civilised society

Margrit M. Manning-Steffen's picture

hier stand mein kleiner Text/ here were my bit of text and my last words to Karen ( 2 times today I wrote some text in relation to Karen Sherlock`s death...including naming and claiming all those responsible for this to be dismissed, accused of torture and murder and punished accordingly...a text, of which I would like to think it would have pleased Karen... each time it disappeared, and I now do/cannot repeat myself a third time: just so much: dear Sue Marsh, yes, every single word you wrote about your friend I can confirm...yes, that was what Karen Sherlock was ... and most likely much more...) Marie with love and , dear, so dear Karen, I shall always remember you!

TW's picture

' Doing the right thing ' ! Most of us do, but once again the ' Few ' tar the rest. A lot of people now having support withdrawn, have worked and paid into the system all their working lives. The ' Few ' who have not worked or paid into the system, are the ones that make it into the papers and turn public attention..... but of course, that is what the government want. Payment to Non UK from the EU, should be paid by those EU countries they have come from. No ... instead, lets go one step further and bail out their banks as well...... Oh but I forgot, it is the rich disabled that can afford to pay for it all, not the poor banks and corrupt mimisters.

beryl smart's picture

So sad for karen what is the world coming to the rich get richer
The poorer get poorer the sick get sicker
David cammeron fills his pockets & his wifes
Where do we go disabled go to the CUTTER
I'm afaid

Anthony adshead's picture

The lack of main stream media coverage of the crimes of this government are a shame on the nation.

JamesM1's picture

The threshold of £7500 to stop their allowances is far too low. It should be more like £22,000 upwards.

Tony Dean's picture

I bet the Daily Mail does not report her death.

Tony Dean's picture

I bet the Daily Mail does not report her death.

Simon Patterson's picture

Shocking story. RIP Karen. Something must be done about the back to work tests. I hope politicians wake up and do something about it.

newsitewon'tacceptname's picture

I don;t know- I do think its a question better aimed at the editors at the New Statesman and the Labour Party, than anywhere else though.

Lulz's picture

Yeah, New Statesman! Where are my disability benefits? I know you've got them hiding somewhere amongst your fonts & photo layouts & Intrawebs. Pay up, you insensitive jerks!

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