What is it like to live through a time of austerity and cost of living crisis while on benefits with a severe disability?
According to a UK survey exploring poverty levels of working-age disabled people, a third of the 1,220 respondents reported having £50 per week or less to live on after household costs, and over a quarter reported not having enough for heating. This was before experiencing the full force of our current cost-of-living crisis, with its further depletion of disposable incomes.
Notwithstanding the government’s Autumn Statement indicating that means-tested benefits will get an additional Cost of Living Payment for 2023–24, and that benefit caps will rise with inflation, any right-minded person has to ask how it can be possible that disabled people reliant on benefits to keep body and soul together face absolute poverty, in spite of this being an eminently ‘preventable harm‘.
So, how did we get here?
This is not a new phenomenon. The intention to harm can be traced back to the 1990s and the UK government’s admiration for America’s neoliberal welfare regime. An opportunity to mimic came with the 2008 economic crisis and the ensuing austerity agenda, misleadingly presented as a means to help stem the fiscal shortfall. The centrepiece of this agenda was the Welfare Reform Act 2012 that comprehensively overhauled the benefits system. This was followed by a freeze on working-age benefits, creating a tidal wave of what has been termed ‘systemic violence’ towards benefit claimants, enacted through policies and practices designed to deter and punish. Furthermore, this vandalism was normalised by a sustained campaign of misinformation by government and mainstream media towards people on benefits generally, and people on disability benefits specifically.
Findings from our recent social research study reveal how these welfare policy changes, the practices that accompany them and the misrepresentation of disabled people on benefits have violently disrupted their daily lives. We interviewed, in depth, six people who were in receipt of disability benefits and learned how they faced continuous changes to their benefits. They were locked into a cycle of applying and reapplying, of assessment and reassessment, as well as of appealing decisions in order to meet shifting eligibility criteria. The few who had been on disability benefits before welfare reform spoke of having had a sufficient benefit income to help offset the costs of daily living with a disability, as well as peace of mind with regards to being provided for. This safety net, however, became frayed with the introduction of the Work Capacity Assessment (WCA) in 2008, forcing claimants to be assessed for entitlement to Employment and Support Allowance (ESA). It was further frayed in 2014, by the replacing of Disability Living Allowance (DLA) with Personal Independence Payment (PIP). This entailed the mandatory testing and re-testing of millions of disabled people to check for supposedly fraudulent claims. An example of this disruption is captured by this participant’s comment: “In 2014, I received the enhanced [DLA] rate. But, after that, PIP started to come in around 2016–17 and they cut me off completely … for 6 months over the transition period.”
The practices that accompanied the changes were also highly disruptive. For example, application forms for benefits like PIP and Universal Credit (UC) were found to be indecipherable, and advice misleading and confusing. This is captured by a participant reporting what it was like getting advice from the DWP: “No one knows what benefits work or how to work it out, and what you should or should not be getting in [disability] premiums, or whether you should or shouldn’t be on incapacity benefit.” The assessment centre locations failed to provide appropriate adjustments, for instance with heavy doors inaccessible for wheelchair users. Also, assessment questions were experienced as interrogative and designed to catch the respondents out. For example: “I was asked, if you’re going to the doctor’s, how far is it to the doctor? But the issue for me isn’t the walking, it’s the finding it. So, it’s about two minutes and she said, ‘I think you need to think again, I know where you live and it’s not two minutes’. So, I say, ‘maybe it’s five minutes’ and she replies, ‘well is it two or five?’ … I was just confused and intimidated.”
These welfare changes harmfully impacted participants economically, emotionally and physically. Economically, they led to the costs associated with everyday living becoming prohibitively expensive, with increased use of foodbanks, spiralling debts and even evictions. Such financial pressures caused mental distress and deterioration of underlying health conditions. To add insult to injury, participants felt that the DWP and assessment centres either didn’t believe they were severely disabled or, if they did, seemed to assume that chronic or degenerative conditions could miraculously improve sufficiently for participants to be fit for work. The assumption by the bureaucrats, therefore, seemed to be that they were making fraudulent claims. This is captured by one of the participants saying: “You’ve gone from independent to needing to make a claim, and they made you feel fraudulent – as though I wasn’t entitled, and I was trying to blag my way into getting something off them. … It took me ages to accept that I’m disabled – that’s bad enough – but to then be questioned when there’s medical evidence that you’ve got [a medical condition]”. This lack of recognition for their situation was not confined to bureaucrats. They saw it reflected in government rhetoric, the media, wider society and even friends and families. As one participant stated, they were made to feel: “like a scumbag, … Like you’re the dregs of society.”
Despite the intentional harm inflicted on study participants, at the time they presented as survivors of this systemic violence, and able to sustain lives lived with great courage. But it’s questionable whether this has continued, given the cost-of-living crisis and the additional costs that accompany severe disability (such as charging mobility scooters and other essential electrical equipment, and additional heating and dietary needs). Surely we can no longer look away and accept the unacceptable? We have to challenge policies and practices that consign disabled people on benefits, alongside others, to lives of ‘ongoing suffering’, and we have to stop the relentless violations that contribute to their hidden ‘slow death’.
Seeking recognition for people with severe disabilities on benefits by Louise Hardwick, Molly Hardwick, and Aidan Worsley from the Journal of Poverty and Social Justice is available free to access on Bristol University Press Digital.
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