It’s been a horrific few weeks – few months – for disabled people, with the never-ending uncertainty around the Labour government’s disability benefit cuts making our community scared for our lives.
The government claims its welfare reforms around personal independence payment (PIP) are to help support disabled people into work, but it’s ignoring the fact that many disabled people can only work because of the benefits they receive – and I’m one of them.
I live with a wide range of conditions, including lupus, endometriosis, arthritis, migraines and dyspraxia; the toll these have on my body means that my disability mostly manifests through lack of energy and cognitive function. I would never be able to work a full-time job or one with a strict schedule, as I can only work for a few hours at a time before I can’t look at a screen anymore. I mostly work from bed as that’s where I’m most comfortable.
However, I’ve still managed to build a pretty successful career as a writer. With my limited energy and time, I’ve also helped shape the Taking the PIP campaign, which has brought together more than 130 well-known disabled people to urge the prime minister to stop the cruel cuts to benefits.
But the harsh reality is that if these cuts are approved next week, with a second reading vote on the welfare reform bill, I will lose everything I have.
I receive £558 a month in PIP. I also receive universal credit, the amount of which changes every month because I have to input my earnings, but is roughly £400 a month. At a time when I only have the energy to work one or two hours a week, it means that I’m not working myself to the bone to afford to live and can still pay my bills.
Currently, you have to score 8 points to qualify for the daily living component of PIP. But if the eligibility changes come in, you will also have to score at least 4 points in one activity – these involving your ability to cook and clean, socialise and maintain good hygiene.
On my last assessment, the highest I scored on all activities was 2. Due to my depression and neurodivergent conditions, I’ve made myself ill in the past with bad hygiene. I have to be reminded or pushed to keep myself clean. When I’m in deep depressive episodes, I will go days, or sometimes even weeks, without changing my clothes or washing myself.
It’s unsafe for me to do certain things in the kitchen as I sometimes lack control of my hands. I enjoy cooking, but often cut or burn myself and struggle to use many kitchen utensils. My cognitive and mental health conditions also mean I put housework at the bottom of the list, and prioritise just keeping myself alive. Only this week, I had to deep-clean my house – with the support of friends – after I discovered a fly infestation.
But I make allowances so that I can live a good, independent life. I have apps that remind me to clean and eat, I buy pre-sliced food or mostly rely on ready meals. I live in social housing, in an accessible bungalow, so I can move around safely without fear of putting myself in danger. I live five minutes from my parents, who are on hand to help with housework.
But if Labour’s cuts to PIP go through, I won’t be able to afford to continue living my lovely little life. I will be forced to find a job that will push me mentally and physically to breaking point. If I lose my PIP, I genuinely can’t guarantee I’ll still be here in five years’ time.
And I’m far from the only one. Under Labour plans, more than 3.2 million people will see their benefits cut, pushing around 800,000 people into poverty or even absolute poverty, which is defined by the UN as “a condition characterised by severe deprivation of basic human needs, including food, safe drinking water, sanitation facilities, health, shelter, education and information. It depends not only on income but also on access to services.”
More than 280,000 PIP claimants who are already in work would lose their support – and, as a result, could lose their jobs.
In return, just 1-3 per cent of those affected will be able to move into work. While many working people will be affected, those who can’t work will also be hard hit.
Where I agree with the government is that the welfare system does need reform, but only to make it more compassionate and less inhumane. Keir Starmer says the welfare system “doesn’t work for anyone”, and that it’s “counterproductive” and “works against them getting into work”.
It is all well and good the government saying it wants to support people into work – but when it’s also quietly cutting Access to Work entitlement, its actions don’t show it.
I hear every single day from scared disabled people who have no idea how they’ll survive if these cuts go through. The government can claim this is a cost-cutting measure all it wants, but the reality is that the very real cost will be that of disabled people’s lives.
Is that really a debt politicians want on their hands?
Rachel Charlton-Dailey is a journalist and disability rights campaigner who is part of the ‘Taking the PIP’ campaign. Her new book, ‘Ramping Up Rights: An Unfinished History of British Disability Activism’, is out next week (C Hurst & Co, £14.99)
