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.

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

Karen Sherlock's Twitter page.
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The lute master and the siege of Aleppo

Luthier Ibrahim al-Sukkar's shop was bombed; when he moved, militants came for him. Over WhatsApp, he told me what's next.

Aleppo was once a city of music, but this year the 400,000 residents who inhabit its eastern suburbs can hear nothing but the roar of Russian warplanes, and ear-shattering blasts from the bombs they drop. To the north, west and south, the city is encircled by ground troops from the Syrian armed forces, Hezbollah and Iran. Most residents are afraid to flee, but soon, now that supply lines to the city have been cut off, many will begin to starve. We have reached the crescendo of Aleppo’s suffering in year five of the Syrian civil war.

One clear August morning in 2012, in the early weeks of the battle for the city, a man approached a street corner shop and found a hundred shattered lutes scattered across the floor. Ibrahim al-Sukkar, the engineer who had made the lutes (Arabs know the instrument as the oud), was overwhelmed. He wandered between the tables of his workshop and peered up at the sky, suddenly visible through holes in the roof. He wept on the floor, amid the dust and ash.

Some of the wooden shards that lay around him had been lutes commissioned by musicians in Europe and America. Others were to be used by students in Damascus and Amman. Each oud was built for a specific purpose. In every shard Ibrahim saw a piece of himself, a memory scattered and charred by government bombs. He packed his bags and headed for Idlib, a few hours to the west, where he set up shop a second time. A year later, his workshop was destroyed again, this time by Islamist militants.

It was at this point that Ibrahim came to a stark realisation – he was a target. If barrel bombs from government helicopters could not succeed in destroying him, the Islamists would. The cost of sourcing materials and getting goods to market had become unmanageable. The society that had inspired his desire to make musical instruments was now trying to lynch him for it.

The 11 string courses of an oud, when plucked, lend the air that passes through its bowl the sounds of Arabic modes known as maqamat. Each one evokes an emotion. Hijaz suggests loneliness and melancholy. Ajam elicits light-heartedness and cheer. An oud player’s competence is judged by his or her ability to improvise using these modes, modulating between them to manipulate the listener’s mood. The luthier, the architect of the oud system, must be equal parts artist and scientist.

This is how Ibrahim al-Sukkar views himself. He is a trained mechanical engineer, but before that he was a lover of classical Arabic music. As a young man in the Syrian countryside, he developed a talent for playing the oud but his mathematical mind demanded that he should study the mechanics behind the music. Long hours in the workshop taking instruments apart led him to spend 25 years putting them together. Ibrahim’s ouds are known for their solid construction and, thanks to his obsessive experimentation with acoustics, the unparalleled volume they produce.

Ibrahim and I recently spoke using WhatsApp messenger. Today, he is lying low in the village where he was born in Idlib province, close to the Turkish border. Every so often, when he can, he sends some of his equipment through to Turkey. It will wait there in storage until he, too, can make the crossing. I asked him if he still felt that his life was in danger. “All musicians and artists in Syria are in danger now, but it’s a sensitive topic,” he wrote, afraid to say more. “I expect to be in Turkey some time in February. God willing, we will speak then.”

Ibrahim’s crossing is now more perilous than ever. Residents of Idlib are watching the developing siege of Aleppo with a sense of foreboding. Government forces are primed to besiege Idlib next, now that the flow of traffic and supplies between Aleppo and the Turkish border has been intercepted. And yet, to Ibrahim, the reward – the next oud – is worth the risk.

I bought my first oud from a Tunisian student in London in autumn 2014. It is a humble, unobtrusive instrument, with a gentle, wheat-coloured soundboard covering a cavernous, almond-shaped bowl. Some ouds are decorated with rosettes, wooden discs carved with dazzling patterns of Islamic geometry. Others are inlaid with mother-of-pearl. My instrument, however, is far simpler in design, decorated only with a smattering of nicks and scratches inflicted by the nails of impatient players, and the creeping patina imprinted by the oils of their fingers on its neck.

My instructor once told me that this oud was “built to last for ever”. Only recently did I discover the sticker hidden inside the body which reads: “Made in 2006 by Engineer Ibrahim al-Sukkar, Aleppo.” 

This article first appeared in the 11 February 2016 issue of the New Statesman, The legacy of Europe's worst battle