The Cost of Surviving: Disabled, in Pain, and Left Behind by the UK Government:

I emailed Darlington Association on Disability today about their Independent Living forum.

They posted today:

"We are relaunching our Independent Living Forum. 

 

The aims of the Independent Living Forum are to:

* bring disabled people together to identify the key issues that are important to you and share experiences.

* support you to have your voice heard and influence change on local, regional and national issues.

* Members will be asked to identify areas of interest / key issues; this will enable us to invite the right people to our events and meetings.

* As part of the first meeting, we will look at the proposed changes to welfare rights and provide support, where needed, to give your views as part of the national consultations.

 

The first meeting is on: Tuesday 17th June, 1.00 -3.00 pm, at St. Augustine’s Church Hall, Larchfield Street, Darlington, DL3 7TG.

 

Booking is essential;

 

email: mail@darlingtondisability.org or phone: 01325 360524. Please let us know if you have any access needs.

 

If you are unable to attend and still want us to include your contribution to the proposed welfare cuts, please email us by the 17th June and we will include them with our response."

---

If you are interested in assisting you can book your place or email them at mail@darlingtondisability.org like I have.

My take:

The Cost of Surviving: Disabled, in Pain, and Left Behind by the UK Government

I didn’t choose this life.

I didn’t ask for chronic pain. I didn’t volunteer to be pushed out of the workforce, or to live under the constant weight of stigma just for existing in a body that doesn’t work the way it’s “supposed” to.

And yet, here I am — disabled, in pain, and now facing even more fear and uncertainty thanks to the UK government’s proposed changes to PIP (Personal Independence Payment). It’s not just policy. It’s my life.

Let’s be clear: I do work. I fight every single day to contribute — unpaid, unrecognised, but never uncommitted.

I work for charities. I raise awareness. I speak out. I campaign. I use my lived experience to drive change, not because I have the energy, but because I can’t bear the thought of anyone else going through this alone.

But that work — that emotional labour, that social impact, that sacrifice — doesn’t count in the eyes of the system.

Because it isn’t paid.

Because I can’t do it 9–5 in a traditional workplace.

The truth? Paid work is a luxury many disabled people simply don’t have access to. Not because we lack skill or value, but because society and the job market aren’t set up to include us. Part-time employment is rare. Flexibility is limited. Accommodations are treated like favours, not rights.

The government isn’t fixing that.

Instead, they’re making life even harder. If you can move your fingers enough to type from a bed, you’re now “fit for work.” If you’re not hospitalised, you’re seen as functional — even if you crash for days after basic tasks, even if your pain is excruciating, even if you’re hanging on by a thread.

Chronic pain doesn’t fit into their boxes.

It’s invisible. Misunderstood. Dismissed.

And when your condition can’t be seen, people assume it isn’t real.

That’s why we need education.

We need people — especially policymakers and assessors — to understand what chronic illness and disability actually look like. We need to dismantle the stereotypes and stop assuming all disabled people either lie around all day or are somehow “cheating the system.”

Because here’s what they never talk about:

Many of us want to contribute. And many of us do — in the ways we’re able. We just do it outside the systems that were never built for us.

And yes, I use prescription cannabis.

It’s one of the only things that gives me some relief. It helps me function, eat, sleep. It lets me show up — not just for myself, but for the people and causes I care about.

But even that comes with stigma. I’m judged for the thing that helps me survive. The assumption? That I’m lazy. That I’m a “drain.” That I’m choosing this.

I’m not.

I am surviving in a society that punishes people for having needs.

This government says it wants to “make work pay.”

How about making life liveable?

How about recognising unpaid work, activism, caring responsibilities — the labour that keeps communities going?

How about creating real options for part-time, remote, flexible, sustainable employment — instead of penalising us for the jobs we can’t do?

Disabled people aren’t asking for special treatment. We’re asking for fairness.

For dignity.

For the right to live, contribute, and be believed.

I’m done being quiet.

Because I’m already doing the work.

It’s time the government did theirs.

Sarah Wingfield 

Independent Disability Advocate 

Author/Actress/Blogger