An Ordinary Hero

Karen Sherlock was just an ordinary woman. She didn’t have a great deal of money, her health meant she didn’t get many opportunities to go out, particularly not anywhere you might have seen her, and even if you did you wouldn’t have given her another thought. Just another woman in middle age, as invisible as all women past a certain age become.

But Karen had another life, one in which she was recognised for her courage and determination to stand up for the rights of all sick and disabled people subject to the Work Capability Assessment (WCA). This utterly remarkable woman’s experiences typify the disconnect between the reality of sick and disabled people’s lives and the blunt instrument employed by the state to decide if we are ‘fit for work’.

Karen was diagnosed with type 1 diabetes when she was three. By the time she reached working age she was already developing complications, but that didn’t stop her from working and living a full life. Time passed, she married her beloved Nigel and worked in the NHS. Her health worsened, and after losing most of her eyesight it became impossible for her to continue working. In February 2008 Karen was dismissed from her job due to ill health, after an assessment carried out by the Occupational Health arm of Atos, on behalf of and decided by the Pensions Agency.

This is when Karen’s nightmare truly began. She applied for Employment Support Allowance (ESA), formerly called Incapacity Benefit, which is for people who are temporarily or permanently unable to work due to disability or ill health. She was called to a Work Capability Assessment ‘medical’. Again it was run by Atos, but an Atos held to entirely different standards by the Department for Work and Pensions (DWP) than the Atos which assessed her for the pension agency as unfit to work in the NHS. The criteria by which she was retired considered only whether she was well enough to do that specific job. The WCA, however, was designed to assess her capacity for any form of work. Ministers such as Chris Grayling have made it very clear that this is the intention of the test, by repeatedly stating their ‘absolute and implacable opposition to a real world test’. In normal-person-speak, that means they refuse to consider an assessment process that takes into account the job the person was trained to do. Instead they focus narrowly on the ability to perform imaginary work-related tasks, such as sitting at a workstation for half an hour.

Karen described her first WCA in Spring 2008 as a ‘farce’. She never heard the results, and was called for another assessment that August, after which she was placed in the Work Related Activity Group (WRAG). Karen’s diabetic autonomic neuropathy, gastroparesis and diabetic retinopathy left her partially sighted, with a heart condition, asthma, chronic kidney disease, B12 deficiency, anaemia, high blood pressure, and she was frequently doubly incontinent. For all these reasons she was correctly found unfit to perform her role in the NHS, but the WCA judged her fit to return to a workplace. A blunt tool, the WCA separates people into three categories. Those who are unfit for any kind of work are placed in the Support Group with no conditions attached to their benefits. Those considered entirely fit for work are transferred to jobseeker’s allowance. Those placed in the WRAG are expected to participate in activities aimed at returning them to the workplace, including mandatory work programmes in some circumstances. For those in receipt of contributions-based ESA (the benefit paid in return for National Insurance contributions) a one year time limit now applies, though this benefit used to be paid to those with sufficient NI contributions for as long as they were sick or disabled. This means that people such as Karen, who have worked all their lives, lose their eligibility. Karen’s husband worked, but even before tax didn’t earn anything approaching the £26,000 pa means-testing limit being introduced for other benefits. However, the means-testing limit for ESA is a partner earning a mere £7,500 pa.

Karen endured the stress and anxiety of four WCA’s and subsequent appeal processes between 2008 and April of 2012, at which point her ESA stopped completely, leaving her and Nigel £380 per month worse off. Karen was terrified; her fear was palpable, even in online communications. She worried about how they’d pay their mortgage and bills, how Nigel would cope. Along with the financial anxiety, Karen’s health was deteriorating. She was awaiting an operation to enable her to start dialysis, being considered for the transplant list her cardiac problems were worsening. Despite all that, Karen remained in the WRAG.

On May 30th 2012, the day before Karen was finally moved from the WRAG to the Support Group (and a mere ten days before her death), Chris Grayling announced that those in the WRAG – people just like Karen who could soon expect to be moved into the Work Programme – “have proved sicker and further from the workplace than expected”. That is one way of describing it to the 32 families each week grieving the death of loved ones who had been found ‘fit for future return to work’; loved ones who were a far cry from the ‘lazy scroungers’ the public has been led to believe this policy applies to.

Although frequently terrified by her treatment, Karen was also amongst the first to stand up to be counted. She understood that telling her story would help others, and acted in her characteristic manner, doing what she believed to be right. In her last email to me, from early April 2012, she told me she had used the benefits calculator I’d suggested she see if there was any other support she and Nigel could claim. There wasn’t. I couldn’t offer Karen any hope. All I could do was apologise, and explain that this was exactly the intended effect of the benefit ‘reforms’ we had all fought so hard to prevent.

Karen played an active role wherever she could, supporting others in distress. When she was frightened, which was most days, she would literally beg other campaigners to reassure her that everything would be ok. Every time it broke a piece of my heart to be unable to offer her the security she needed, the answer she was so desperate to hear, that it would be ok, that it was all some big mistake. She died just days after learning that she had finally been placed in the Support Group, her last years of life utterly blighted by ‘despair, helplessness and frustration’ directly caused by a government which had pledged to alleviate precisely such bureaucratic ordeals.

One memory typifies both Karen Sherlock and the labrynthine, bureaucratic cruelty she experienced. The Atos nurse who performed the initial WCA kindly tried to reassure her that she should be in the support group. This stuck with Karen. She couldn’t understand how what had been so obvious to the first person to assess her was overturned, nor why everyone else she appealed to seemed wilfully blind to the severity of her condition. Although she’d been assessed by an Atos employee, it was a medically-untrained Department for Work and Pensions bureaucrat who had the final say over her allocation. People carrying out the ‘medicals’ weren’t supposed to comment on which group people were to be placed in. Despite her anxiety and the disgraceful way the system had treated her, Karen worried that if she spoke out about the nurse’s kind words, she might be disciplined for her compassion.

I met Karen in October 2010, during the founding of The Broken of Britain, a social media based disability rights campaign. We were asking sick and disabled people to speak out, to tell their stories about how they had become reliant upon benefits, and people were initially reluctant. Pride and anxiety combine to prevent us discussing the intimate details of our lives in public. But a small handful of people came forward, pushing aside the fear that speaking out would be used against them by the DWP, and told their stories. Karen was one of those people.

By Kaliya Franklin (@BendyGirl)