I’m a disabled journalist – the benefits conversation needs to change

The UK Government is once again going after the most vulnerable in society. First it was the pensioners, and now with the publication of a new white paper, it’s the welfare system which is getting the blame. All in an effort to cut corners and save money.

The rhetoric being used by our politicians – and therefore echoed in the media – is around getting people into work, inherently feeding into the stereotype that people who receive benefits are lazy and leeching off the country’s hard-earned taxes.

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The onslaught of vitriol and finger-pointing has made it more and more difficult for me to separate my own personal experience of the benefits system as a disabled person from being able to report on it neutrally.

I have Functional Neurological Disorder, a condition which affects how my brain sends and receives signals to the rest of my body. For me, this means I struggle to walk, I get tired much easier, I get tingling and shaking sensations in my leg and head, and I occasionally have non-epileptic seizures.

I first developed symptoms in 2021 when I gradually lost the ability to walk, until I couldn’t walk at all. I spent two months in hospital doing physio and occupational therapy every day, and then six months of weekly physio living back with my dad to learn how to walk again.

Me pictured with my Gran and my dog Skye a few weeks after being discharged from hospital (Image: Lucy Jackson) My dad became my carer during this period, and another carer – organised by the council – would visit me every morning and help me to shower and get dressed.

It was at this point when I applied for Universal Credit and Personal Independence Payment (PIP).

Applying for Universal Credit was a fairly easy process for me – at the time I had no choice but to take a year out of university, so it was easy enough to prove that I wasn’t currently a student and that I was out of work.

However, the process of applying for PIP was genuinely one of the most dehumanising and humiliating experiences I’ve ever been through. It’s for this reason that I struggle to understand why the UK Government continues, time and time again, to go after disabled people.

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I filled out pages and pages of forms just to be considered for a phone interview with the Department for Work and Pensions (DWP). I answered everything from preparing food to going to the toilet and cleaning myself, to my ability to follow directions and form relationships with other people.

It’s embarrassing enough having to describe how you can’t shower alone, that you need someone to prepare your food, or that you once wet the bed because you physically couldn’t walk to the toilet. It’s worse when you have to tell this to a total stranger over the phone who – quite frankly – couldn't care less, and whose job it is to give you as little support as possible.

At this point, I was getting seizures almost every day. When you combine that with my other symptoms, and with the anxiety caused by having to prove I was “worthy” of support, I was left utterly exhausted after my interview with the DWP. They knew the fear I was experiencing and the pain that I was in, but they still acted on the assumption that I was guilty until I could prove myself innocent.

My claim was eventually approved, and when I moved back to Scotland I was transferred to the Scottish version of PIP, the Adult Disability Payment. The Scottish system is undoubtedly much better – although it’s a very similar process, the people I spoke to treated me as a human being, rather than just another potential scammer.

It’s difficult for me to write about my experience, but I think it’s important to show just how anxiety-inducing and truly dehumanising the process of applying for benefits is. I can’t see how anyone would be willing to go through such intense scrutiny – the kind that rips apart literally everything you are – just to commit fraud. Surely there are much easier (and quicker) ways to go about that.

I’m not denying some do game the benefits system. But in the case of PIP, the latest figures from the UK Government show 0% of cases for the 2024 financial year were fraudulent (around three in 1000 cases) – the lowest on record. Disability Living Allowance fraud was just 0.1%, while overpayments of Universal Credit due to fraud stood at 10.9%.

It's clear that the vast majority of people who claim disability benefits do so for legitimate reasons, and they do this despite knowing that they will have to put themselves through a kind of hell no one should ever have to experience just to prove they’re “disabled enough”.

The DWP don’t just give money out willy nilly. They make you work for it. They are brutal, and cold, and while there are people there who do genuinely want to help you, the system is geared towards denying as many people as possible as a way of cutting costs.

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The entire welfare system needs an overhaul, and threatening to cut support for vulnerable people by dangling their benefits above their heads like a carrot is nothing short of degrading.

Our media is forgetting something: Benefits don’t just enable people to “sit at home”, they enable people to live, to work, to contribute to the economy and to have a chance at a better quality of life.

The money I receive from Social Security Scotland physically gets me into the workplace. Without it, I would struggle to afford public transport, I wouldn’t be able to work as often, and I wouldn’t be able to work in the job that I do. It enables me to live independently, something I didn’t think would be possible three years ago.

Yes, my story is only one, and there are undoubtedly some cases where fraud has taken place. But to treat all benefits claimants as one and the same is yet another demonstration of a government out of touch with the people.