At Spicy by Design, we don’t just talk about disability and neurodiversity —we live it. And we know that the systems meant to support us often fall short. That’s why we hosted a live panel discussion on Personal Independence Payment (PIP)—to lay bare the truth, share lived experiences, and demand better.
This wasn't just a rant. It was a raw, real, and practical conversation featuring voices from the front lines of disability advocacy and support:
Mark Webb – Disability activist, living with advanced multiple sclerosis
Tom Lund, Jamie, and Hayley – Advisors from Citizens Advice BCP
Me, Chandy – Neurodivergent, chronically ill, and navigating this system personally
What came out of the session was both heartbreaking and empowering. Here's what we learned—and what we want you to know.
PIP Is Meant to Help Us Live—But It's Often a Barrier
PIP is a financial support designed to help disabled people manage the extra costs of living with a health condition. But in reality, the application process itself can be disabling.
From 40+ page forms to dehumanising assessments, the system feels designed to wear you down. Mark described the crushing effort it took to complete the form while managing MS-related brain fog and memory issues.
I shared my own frustration about repeatedly having to “prove” I’m disabled—despite my conditions being permanent. The emotional labour is relentless. Every reassessment is a trigger, reopening wounds, stirring fear, and making you feel like a fraud even when you’re telling the truth.
What About Hidden Disabilities and Neurodivergence?
If you’re neurodivergent, the challenges are multiplied. The PIP criteria are heavily geared toward physical disabilities, with little nuance for conditions like:
Autism
ADHD
OCD
Anxiety and trauma-based conditions
Executive dysfunction
Sensory processing differences
Jamie and Tom spoke about how many neurodivergent people fall through the cracks. Even if you meet the criteria based on your struggles with communication, planning, or social interaction, it can be extremely hard to evidence that—especially without a formal diagnosis (which many wait years to get).
And when the government starts talking about tightening eligibility? We feel the ground shift under our feet.
Fluctuating Conditions Are Not Understood
For those of us with fluctuating health (like chronic fatigue, fibromyalgia, or mental health conditions), PIP assessments are deeply flawed. You’re told to describe what you can do “most of the time”, but how do you average wildly inconsistent days?
I can have a productive week and then be in bed for two. Does that make me less disabled? The system assumes a binary: you're either “well enough” or “not”—with no space for complexity or in-between.
The Myths That Harm Us
One of the biggest issues our panel discussed was the government’s framing of PIP as a “work benefit.”
Let’s be crystal clear:
PIP is NOT a work incentive. It is a disability benefit—meant to help with costs like mobility aids, travel, therapies, support workers, heating, special diets, or taxis when public transport is inaccessible.
Many of us work because we receive PIP—not the other way around.
Cutting this support doesn't “encourage” work. It makes work impossible.
The Assessments Are Often Dehumanising
Several panellists talked about assessments that focused on eye contact, clothing, or education level—none of which reflect real-life struggles.
In my last assessment, I was penalised because I said I had a degree. That was used as proof that I could “read a bus timetable”—as if anxiety, memory loss, or sensory overload simply vanish if you have a BA. They don’t.
Assessors often don’t have experience in the applicant’s condition and make assumptions based on appearance or outdated stereotypes. As Tom pointed out, too many people expect to fail and end up in tribunal—a costly and stressful process that the system could avoid with fairness at the start.
Shortfalls for Young and Undiagnosed People
Hayley raised a crucial issue: young disabled people—particularly those born with conditions—are often overlooked. Some of the proposed reforms suggested delaying eligibility until after age 22, leaving younger adults completely unsupported.
Others, like many neurodivergent people, may not yet have a formal diagnosis. Without documentation, their very real needs are dismissed.
So What Needs to Change?
Here’s what we’re calling for:
1. Lived Experience at the Centre
Let disabled and neurodivergent people co-produce reforms. Don’t create systems about us without including us.
2. Recognise Invisible Disabilities
PIP criteria must better account for mental health, executive function, sensory needs, and hidden illnesses.
3. Simplify the Process
The form is long and often confusing. Assessment reports are riddled with assumptions. Review periods are arbitrary. We need:
Clearer language
Less paperwork repetition
Longer awards for permanent conditions
4. Fair Assessments
Use professionals who understand the conditions they're assessing. Make lived experience and personal testimony count—not just medical notes.
5. Support Organisations to Help
Any changes must be implemented with enough lead time so that charities like Citizens Advice can prepare and support people properly.
Practical Tips for Navigating PIP
Keep a copy of everything: Forms, letters, evidence, and what you wrote.
Don’t be afraid to ask for an extension: Call DWP if you need more time.
Include extra pages: The boxes are small—attach additional detail if needed.
Get help from trusted organisations: Like Citizens Advice, Disability Rights UK, or local advocacy services.
Challenge unfair decisions: Most successful appeals are won at tribunal—don’t give up.
Ask for reasonable adjustments: Under the Equality Act, you can request phone or paper assessments, or to have a support person with you.
Final Word: We’re Not Going Quietly
The conversation may have been sparked by proposed reforms—but these issues have existed for years.
We are not scroungers. We are not statistics. We are not broken.
We are people trying to live our lives with dignity—and the PIP system should support that, not punish us for it.
The government has launched a review. Now is the time to act.
Write to your MP – Templates and tools are available from charities like Scope, Z2K, and the Trussell Trust.
Share your story – On social media, in writing, or with your community.
Educate others – Fight misinformation with facts and lived truths.
Support each other – This system was built to isolate us. Let's choose connection instead.
🔗 Visit the Spicy by Design website for:
PIP guidance resources
A template letter for writing to your MP
A list of support services
More blogs and real stories
Let’s keep fighting for a system that sees us, hears us, and supports us.
Disabled lives are worthy. Neurodivergent lives are valid. And together, our voices are powerful.
