Why we need to change how we represent disability benefits in the media

26 June 2024 | Inclusive Journalism Cymru

As someone who’s gone through the application for both PIP (Personal Independence Payment) and LCWRA (Limited Capability for work and Work-Related Activity) reading Rishi Sunak’s comments about “sicknote culture” was the final straw, after seeing countless negative articles over the years disparaging disability benefits.

From oversimplification to out of touch ideas, writers and journalists need to reflect on how they talk about a system that’s meant to help us be independent and engage in society where we can. 

One of the first things to check is that the language used is current and reflects the feelings of the public at large. Despite the fact that sick notes officially changed to fit notes in 2010 (around the same time the Conservatives came into government), talking about a “sick note culture” now feels like an unwelcome callback to the wider discussion around benefits at the time. For those who remember being bombarded with articles about “benefit scroungers” and shows like Benefit Street it’s easy to feel apprehensive about applying for benefits, or believe you need to justify it at every step of the way.

Personally, I was initially wary of applying for PIP even though my health struggles were affecting my work. I had to be encouraged by a friend to go through with it due to my dependence on public transport, a direct result of having epilepsy which prevents me from being able to drive. 

Another recent issue is the influx of articles proudly stating “With any of these health conditions you can get up to £700 a month” followed by an oversimplified, best-case scenario of how to claim benefits such as PIP. Especially in the current financial environment, articles like this can end up giving people unrealistic expectations of how easy it is to claim and how much they would receive. With rough timelines being around 6 months from the initial claim to the first payment, applicants will often need to challenge decisions which can prolong the wait.

When I went through the process, which took over a year to complete, I had to go through the initial assessment then a mandatory reconsideration before finally getting it resolved in a tribunal. This was incredibly stressful and took 120 pages of notes, forms, and letters to get it resolved.

"For those who remember being bombarded with articles about “benefit scroungers” and shows like Benefit Street it’s easy to feel apprehensive about applying for benefits, or believe you need to justify it at every step of the way."

Sam Lewis


Something else that also needs to be considered when talking about disability benefits is the restrictions on how it is provided, such as through using vouchers or applying for one-off grants, whilst simultaneously aiming to get people with disabilities into employment. Particularly when discussing PIP, where the focus is on a person’s ability to carry out certain daily tasks rather than their ability to be in employment due to a health condition or disability, there seems to be no consideration that some people may use benefits to stay in employment. 

When I was in work prior to getting PIP I often had to take days off due to my disabilities being negatively affected by the stress of working full time hours. However, when my PIP was put into place, and after discussions with my employer where I considered the financial impact, I was able to drop down to 4 days a week. In addition to this I was able to manage my conditions better which resulted in much lower rates of absence due to sickness. By restricting the way PIP is provided the government removes the ability of the recipient to decide for themselves what support will empower them to be independent.

Finally, the idea that some mental health conditions are milder than others, namely anxiety and depression, should be avoided and instead discussed in terms of the varying complexity of mental health conditions and the availability of support. Although there are arguably more complex mental health conditions than depression and anxiety, often with very sparse amounts of support, this doesn’t take away from the fact that these conditions can be debilitating and at times fatal.

Using generalised statements when talking about health conditions could result in people downplaying the impact it’s having on their lives or lead to a reliance on outdated or overly exaggerated representation. For example, someone with limited understanding of bipolar may only look at a person’s experiences of mania, hypermania, and depression without considering how things such as impulsivity and the type of bipolar impact their ability to carry out daily tasks. This in turn can impact how assessments are done, particularly in cases where the assessor lacks enough relevant experience to understand how certain health conditions can present themselves.

This happened to me, as when I had my initial PIP assessment it was carried out by a physiotherapist – while suitable if I had a physical health condition, for someone with more complex mental health conditions it doesn’t provide much confidence in their final decision. 

Although I hope that a lot of these comments will be relegated to the final pages of the current Conservative government’s chapter in history, there are still lessons we can take into the future. We need to improve how we talk about disabled people and those who receive benefits because of how their disability affects them. By elevating the voices of people who need benefits, understanding the realities of the application process, and ensuring that the language used is up to date, we can help create a world where disabled people feel fairly and properly represented by the media.

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