i'm a disability benefit recipient. the last few months have been terrifying
disability benefit rhetoric, the welfare bill, and what you can do about it
I didn’t used to talk about being a disability benefits recipient in the UK.
I’ve always been too scared of the judgement, as someone who is public facing in my work, and of people maliciously reporting me for my politics.
Then Labour got elected, and introduced the “welfare” bill that is currently going through Parliament and threatens to remove the lifeline of benefits from hundreds of thousands of disabled people. So, now I talk about it, I guess, because it became too hard not to.
Although at time of editing, Labour have been forced to say they won’t look at cutting PIP until its review has been completed, the threat is still very real - and the cuts to Universal Credit remain, cutting payments for new claimants from £97 a week to £50 from 2026/7.
I’ve written a couple of articles on the topic, less about my own lived experiences but the possible impacts of the changes, which you can read here in The Lead and in The Canary
The week the bill’s intentions were put forward by Rachel Reeves, I was invited to share my feelings with the BBC for their social media content.
That was probably something I should have known better about, really. I ignored my gut. A day later, the BBC turned the comments off.
The UK has no idea what disability looks like (or what we need)
I know that people must look at me and not understand - I am young, not visibly disabled without my aids, I speak eloquently most of the time and am still quite heavily masked, no matter what I may believe. The purple hair likely doesn’t help. I am not judging people for not realising I am what a PIP claimant can look like; I am judging them for what happens next - the refusal to acknowledge I may not be a scrounger or a liar.
It is absolutely no surprise, though, of course, when the rhetoric is what it is from not only the media but the government (both now, and under the Tories). For almost two decades, disabled people have been made to be the enemy of the working class - even though many of us are the working class - supposedly receiving huge piles of cash whilst sat at home, whilst the working class work 40+ hour weeks for pennies.
Never mind that PIP is a maximum of £749.80 a month, whilst the extra costs of disability are an average of £1,095 a month1. Never mind that disabled people are more likely to be in both poverty - 23% compared to 17% in non-disabled people2.
The extra costs of being disabled can look a myriad of different ways. It can be about paying for additional aids - most wheelchair users do not receive their chair on the NHS, being forced to save or fundraise, and many other aids are not provided either - or for therapies that we are not given access to long-term (or at all). It can also be about paying for extra electricity and water for disability-related reasons, such as needing to do more laundry or using electronic devices that need to be charged. Research by the Family Fund found that families with an autistic child spent at least an additional £51.10 per week on everyday non-specialist goods and services to meet their needs3.
There is no luxury living on PIP - and it is totally misunderstood by the public just how hard it is to get. I’m sure there are easier ways to commit fraud than to try and scam your way through a system that the majority of claimants have to appeal for and win at tribunal (71% of initial decisions from 2018 to 2023)4 - and the majority win on the same amount of information (58% of tribunals from January 2021 to September 2023)5. That’s after sending in hundreds of pages of information, having a traumatic assessment, and waiting months for the result of… Before doing it all again only a few years later even if your condition is life-long.
PIP is not an out-of-work benefit and the nuance of that
Under the threatened cuts, it feels like we’ve been fighting a constant losing battle when saying it isn’t an out-of-work benefit: government ministers in the media and in the House of Commons constantly implying otherwise and never getting fact-checked.
I think it’s important for this to be something that is understood because the focus around this issue should not and cannot be about work. The implication otherwise pushes forward the continued rhetoric of disabled people as the enemy of the working class and fails to recognise the importance of attempting the fill the gap of the extra costs of being disabled (even though the numbers do not match up).
However, when we do say this, we need to not make it sound like that means that disabled people who cannot work don’t deserve support. We cannot leave these individuals behind in our advocacy - and must make sure their benefits are just as protected as anyone else’s who can work or could work. This is particularly true now that PIP has been temporarily given a concession under the bill, but Universal Credit is still extremely threatened.
I promise you, it isn’t easy…
It isn’t easy to get these benefits, it isn’t easy to be disabled, it isn’t easy to constantly be under state surveillance and looking over your shoulder. The rhetoric we face that seeps into the public from the government and the media makes our bones ache. So many of us would give up the money to have the ability to work more or to get out of the poverty so many disabled people face.
The idea that it is a simple process, check a few boxes and get thousands into your account, has been perpetuated constantly with minimal fact-checking6, leaving this idea in the minds of so many. It vilifies some of the most vulnerable people in our society - this society that is supposedly one of the richest of the world, but talks about ‘tough decisions’ for disabled people as it funds wars - and leaves us struggling for the community and support we so desperately need.
PIP fraud, specifically, has been found to be less than 1% of claims - with overpayments for all reasons, including clerical errors, just 0.4%7. It’s a non-issue - not that the news would let you believe that.
So what can you do about it?
Challenge people when this rhetoric comes up whether that be in person or on social media (particularly media outlets)
Email your MP your concerns - although this round of voting is over and it is going to the Lords, many disabled people are still under threat
Follow Disabled People’s Organisations and grassroots organising such as Disabled People Against Cuts, Taking the PIP, Disability Rebellion, Mad Youth Organise, Crips Against Cuts (some of these have local groups too)
Protest with us - the above orgs will tell you when this is happening!
Read books such as Crippled by Frances Ryan, Ramping Up Rights by Rachel Charlton-Dailey, Mad World by Micha Frazer-Carroll and The Department by John Pring
Consider distributing extra funds to disabled people needing mutual aid, or to Disabled People’s Organisations
Follow more disabled people, advocates, writers, creators; read our work whether it’s about disability or not; make us a part of your everyday life and normalise disability
If you made it this far, thank you so much for reading! If you’d like to support me, you can become a free or paid subscriber, or buy me a coffee (a pink lemonade, actually)💫
Scope (2025) Disability Price Tag 2025
All-Party Parliamentary Group on Poverty and Equality (2025) The Disproportionate Impact of Poverty and Inequality on Disabled People
Family Fund with Dr Blackwell (2023) “My kids need what they need” – Additional family costs for meeting the everyday needs of children on the autism spectrum
Department of Work and Pensions (2023) Personal independence payment: Official statistics to July 2023, GOV.UK.
The lack of fact-checking that British media faces - live on screen or radio and in print - is its own issue to discuss.
Department of Work and Pensions (2024) Fraud and error in the benefit system, Financial Year Ending (FYE) 2024