This article was republished for International Women’s Day 2026 to highlight the incredible women of Bylines Network
After 14 years protesting the politics of balancing the books on the backs of the vulnerable, and campaigning vociferously for a government that wouldn’t, it is depressing to witness Labour following in the lighter, but still recognisable, footsteps of the Conservatives with their new welfare reforms.
I live with myalgic encephalomyelitis (ME). I am currently chair of the Melton and Syston Labour Party and an elected Labour councillor on Melton Borough Council. I handle emails, phone calls and reading of reports from my bed in my pyjamas.
Labour Party member working from under my duvet
I describe ME as having a battery powering my body which is like an old mobile phone that never quite charges completely and needs plugging in more frequently. At my worst, I am bedbound, unable to cut up my food, clean my own teeth or get myself dressed. At my best, I can manage a few hours of carefully managed activity a day. I can sometimes sustain more, but not for long. Over-do things and I crash, running out of energy completely and meaning a fortnight in recovery when even opening the curtains will prove too much.
I schedule enough recovery time before and after meetings to make my work sustainable. I’ve only judged it badly once, taking ill in the chamber during a full council meeting and being unceremoniously removed and placed on the floor in the mayor’s office for the remainder.
Claiming benefits: not ill enough for help
Unlike most politicians, I have firsthand experience of the support on offer for disabled people in the UK; specifically, Personal Independence Payments (PIP). To be clear, Labour’s reforms would mean me losing 75-100% of my help. Claiming PIP is incredibly intimidating and an emotional rollercoaster. I cannot stress enough that nobody is doing this for fun and that this is definitely one of the most unpleasant experiences I’ve ever had, including:
- The assessment, which feels more like a cross-examination, leaving you feeling as if you’re being accused of fraud
- Endless waiting with your life in limbo, whilst others decide if you’re worthy enough to live that life with dignity and meaning
- The more-often-than-not flawed decision letter, usually full of fun phrases like, “You’ve told us that you can’t manage X, well, I’ve decided that you can!” (How very generous.)
My initial claim failed.
Labour redefining disability
The assessor’s report was full of more misrepresentation and bare-faced lies than a Trump presidency. A particular low point was the assertion that I “didn’t look underweight” so was therefore clearly “able to cook meals and eat”. When challenging the decision, I pointed out that thankfully my husband wasn’t leaving me to starve and would cook, sometimes cutting up my food if necessary.
I went from zero points to sixteen overnight, but I had to fight for the correct judgment. Many lack the capacity to. Yet success at tribunal is fairly high; in the three-month period to July 2023, it was 68%. One wonders how much money the DWP could save simply by making the correct decisions in the first place?
It is not wrong to be tackling the barriers preventing those who could be working back into work. For all the mantras about protecting the ‘most vulnerable’, the government is concurrently redefining who counts as such and who will qualify for protection in the future, forcing thousands more into poverty.
Some positives but reforms are still punitive
There are some positive proposals, such as the scrapping of the awful Work Capability Assessment and repeated reassessments for claimants with severe, lifelong disabilities. PIP is also not being frozen or means-tested, as rumoured, nor moving to a voucher scheme like the Conservative policy.
However, I also see a lack of congruence and completely counter-productive cruelty. If these reforms are about supporting people into work, why come after PIP? This benefit is designed to support those with disabilities and to cover the extra costs of accessing life as a disabled person. Scope puts this at £1,010 a month. Crucially, many rely on this financial support to do the very thing the government is claiming it wants to help disabled people do – to work.
Removing PIP won’t suddenly make us more employable; it will only make us poorer, taking money out of local economies in the process. The same can be said for the punitive changes to the health-related top-up to Universal Credit. One gentleman I was speaking with recently and who would lose much of his financial assistance, is a wheelchair user with severe mental health problems. He is also two years from retirement. Who is giving him a job to compensate his loss of income? What is the purpose of simply making him poorer for 24 months? He is petrified.
Getting back to work is an impossible goal for some
As someone who has spent nearly 13 years out of the workplace, and is still only 45, I would absolutely welcome the chance to “get back to work”. But it’s not that simple. A few years ago, I found a job with a supportive employer who couldn’t have been more accommodating. However, the repeated need to be well enough to sustain whole days completing tasks and interacting with others was too much. I endured disabling migraines, was frequently unable to eat or cook and struggled to get myself changed or engage in even a short conversation with my children at the end of each day. The painful truth is that being in work made me sicker. I loved my job, and the money helped take the pressure off our family finances, but it simply wasn’t tenable.
So, when I hear MPs say that the way to make sick people better is for them to work, I wonder how much they truly understand the challenges we face or if they genuinely believe employment has never occurred to us before! When the MPs saying this are from the Labour Party, it makes my stomach churn.
The Labour Party: am I on the right bus?
Political parties are like buses, not door-to-door taxis. You jump on the one travelling closest to your destination and sometimes need to walk the rest. As a member of the Labour Party reflecting on these proposals, I’ve concluded the distance I now need to walk has got a whole lot longer, which is ironic, given that walking long distances is something I can’t do.
The Left used to understand that we cannot cut our way to growth. Blaming benefit claimants for the stunted economic prospects of our nation and the frustrations felt by those struggling to make their wages stretch far enough, is something the Conservatives have been doing my whole life (I grew up under Thatcher). I joined Labour seeking a different narrative to this self-fulfilling doom loop which is now spiralling away from the social justice people like me got involved in politics to pursue.
I keep thinking of the voter I spoke to whilst campaigning last summer. He was petrified of a Conservative government coming after his PIP and forcing him onto vouchers and was going to vote Labour after I assured him that his PIP would be safe in our hands. He would be justified in now thinking that I’d lied to him.
Staying aboard to fight
In Melton and Syston we have lost local members and candidates as a direct result of these welfare cuts. As I wonder if the bus I’m on has driven completely off course, I’m grateful for the ever-growing list of Labour MPs like Nadia Whittome, John Trickett, Clive Lewis and Rachael Maskell who have spoken out. They give me the courage to stay aboard, but I have also come to realise that I need to stay aboard.
For all the good and constructive elements, no disabled person would have come up with these cuts in their current form, and no disabled person would be communicating them so callously when seeking to justify them to people who are vulnerable and anxious. Yet if all of us with disabilities down tools, how does anything improve? If it takes disabled people from within to strong-arm the party back onto the course it ought to be on, I’m up for the fight. It also means I can look folk in the eye and reassure them that there are people on the inside fighting for our government to be better. Because I am. Often from my bed and in pyjamas, but I am.
