(scroll to the bottom of the page to visit my Instagram for the audio version of this letter)
Hello, for those who might not know me, I'm Ash Cox, my pronouns are they/them. I am a tall, white, chubby non-binary person in my late 30s, with black and green hair and piercings. I often wear black trousers and black t-shirts with the arms cut off, because I don't like sleeves.
I’m artivist, creative access producer and consultant, from Salford, focusing on work that is reflective of my lived experience being a disabled, queer, working-class arts and science nerd.
I'm sharing my experience of disability benefits through the lens of working in the arts in the hopes you'll better understand what's happening and support us.
Essentially, what the government are doing will push people like me out of the industry and into poverty. I am genuinely scared about my future, and considering my job is to make the arts and culture more accessible and inclusive, it feels even more terrifying.
I don't know what you're all thinking... Maybe that it doesn't affect you, so it's not your problem?
Maybe you believe the benefit scrounger rhetoric?
Maybe you're just so overwhelmed with your own life that you don't have the capacity or energy to fight for someone else's?
Whatever you're thinking seems to be keeping you quiet, and your silence is very much noticed.
This has been hard to write. I'm not in a good place physically or emotionally, and it scares me to be vulnerable publicly. But this is really important.
I’ve been redrafting this blog and putting off sharing it for weeks. But the recent news that Touretteshero co-founder Jess Thom will no longer be able to do her job as co-artistic director of her own theatre company because of a 60% cut to her Access to Work has completely shook me.
There's loads I want to tell you, but I'm trying to be concise and not go off on tangents because this "reform" intersects with so much that I feel strongly about. Also, I’m very mindful of my internalised ableism and imposter syndrome, which often makes me feel like I need to justify my identity and needs. Which I feel I have no choice but to do at the moment, like many other disabled folk.
Some of my story... Which isn't unique. But I’m telling it in the hopes that reading/hearing it from a person you know, a colleague, a friend, a collaborator, might push you to take action.
So, in November 2022, my employer referred me to an independent occupational health assessor because they were worried, and rightly so. The assessment found I was unfit for the physical responsibilities of the role and that I couldn't continue working full-time.
In January 2023, I was supported to apply for PIP by a colleague who had years of experience supporting disabled people to apply. I needed support because the application form is overwhelming. My colleague was really understanding and supportive, but I felt humiliated and ashamed throughout. Admitting the reality of my health conditions and my struggles is really difficult for me. I have a lot of internalised ableism and medical trauma. But we were confident I'd get awarded PIP with all of my complex medical history...
Then in April 2023, on the same day I got the news I'd been commissioned by the Collaborative Touring Network, Unlimited and The Old Courts, in association with wonderful Touretteshero. I also got the news my PIP application had been rejected. Now, I laughed at first because the irony was too much.
Then I read the report, and I was absolutely horrified. What I had said in the assessment had been grossly misinterpreted, and they lied about things that I had medical evidence proving!
Also, my PIP assessment report was written and signed off by someone who didn't even assess me, who wasn't even in the Zoom room?!
They also stated that because I had the assessment at work, I was fit for work and, therefore, didn't qualify (even though they knew I was losing my job and they had the occupational health assessment evidence). Also, more importantly, PIP is supposed to support the additional cost of living as a disabled person; it's not (supposed to be) work-related or means-tested.
So I appealed. In their response, they lied further and ignored everything I'd flagged as inaccurate. I was denied again and told I would have to go to tribunal. Honestly, I was so distraught and dehumanised by the whole thing that I couldn't face going to tribunal and have been putting it off for over 2 years, and I have no idea what my next steps are.
In 2023, I also applied for Access to Work, a benefit designed to support disabled people to be able to work by paying for vital things like support workers, accessible transport, adaptive equipment, etc. I spent 14 months going backwards and forwards with the most incompetent case worker, who then left the DWP without informing me.
My case was passed to someone new (something else I wasn't informed of), who didn't read my access notes and was trying to call me from an unknown number. Now I don't answer unknown phone calls, which they knew, but ignored. I’ve also learned never to talk to the DWP on the phone without a witness. It's just important to get everything in writing.
So I didn't hear from them for months, I kept emailing my caseworker and not getting a response. I didn't know he'd left, there was no out of office, no bounce back, nothing.
Then I finally got an email saying they'd closed my case because I (!) had been unresponsive.
I complained twice and signposted their incompetence, but was told it was my fault and that I'd have to reapply.
Every interaction I have had with the DWP throughout my adult life (supporting my mum) and in the past few years for myself has been incredibly stressful and demeaning. It has created more barriers than it has removed.
I realised at the beginning of 2025 that I'd need to put on a brave face, book a couple of weeks off work this May, hire my support worker and reapply for PIP and Access to Work because I am literally hanging on by a thread, physically and emotionally. I want to work, and I can work when my access needs are met. (little update, it’s nearly the end of May and I still haven’t had the capacity or energy to fight this fight)
The only financial support I currently get is the health component of Universal Credit, which is currently £97 per week. But, if I earn over a certain amount (I still can’t quite figure out exactly what this is) per month from freelance work, my Universal Credit gets deducted.
Now, anyone who works on short contracts or projects will understand that invoices can get paid very sporadically, and sometimes money can come into your account in a big lump sum one month and then nothing the next month.
The DWP don’t understand or care about freelancers. Especially disabled freelancers. Because of this, I and so many others live in a constant state of panic.
The government is planning to reduce the health component from £97 a week to £50 a week from 2026.
I spend on average £500 per month to get to work and to physically be safe and supported (taxis, support worker, etc). I often pay for this from my own wages because the arts is underfunded and there often isn't an access budget. Sometimes, that means my day rate drops below minimum wage.
I also spend hundreds more a month on personal access costs, adaptive equipment, medications, taxis, etc.
Scope research has found that on average, disabled households need an additional £1,010 a month to have the same standard of living as non-disabled households.
My mum, who is also disabled, lives with me and receives an inadequate amount of disability benefits.
My mum used to get a higher rate of PIP and was told she'd never need to be reassessed, but get this, they moved the goal posts and a few years ago and made her get reassessed. And even though she had more diagnoses, including arthritis and cancer, her money was reduced. Reduced. Because having more illnesses means you need less support?! This is the reality of it, and it is gross.
The proposed changes to the qualifying criteria points for PIP will affect my mum, which will in turn affect me.
The only way to financially survive is for me to work full time, but I can't work full time because I'm too ill. I am literally running on fumes, my flare-ups are overlapping, and I'm burnt out.
I have to sleep at least 12-15 hours a day to be able to function, I can only manage being upright and engaged with the world for around 4 hours at a time before I have to rest. If I go over that (which I often do), I pay for it big time.
I also can’t work full-time for an employer because there are almost no accessible jobs. Many organisations claim to be ‘Disability Confident’, but as a disabled person and an access consultant, I can assure you, most are not.
Or I could work less and increase my day rate, which will make my contribution to arts and culture financially inaccessible to so many, especially the disabled artists I work with.
I can't take time off sick because I'm freelance and don't have an employer to support me or pay SSP. SSP doesn't cover the cost of living anyway.
Universal credit is inadequate to live on, and I can't get PIP - even if I reapply, it’s not looking good now, is it?
Support from Access to Work to pay for my support worker and travel costs would be an absolute lifeline, but it's around a 42-week turnaround, and that was before the government announced the attack on welfare. It took me 60 weeks in 2023, and look what happened there.
The disability benefits system does need reforming, but not in the way this government seem to believe.
My future reality. If my mum loses her PIP and I lose my Universal Credit and can't get support from Access to Work, I won't be able to work, we will lose our home, and we will be pushed into poverty.
Disability and chronic health doesn't discriminate, this could literally be your lived experience tomorrow.
We have to do something. Well, you have to do something.
I’ve put a few links below (for those listening, the links are in my bio). I was going to create a step-by-step action plan, but honestly, you need to do the work. You need to sign petitions, write to your MP, donate, support, protest. Because we’re exhausted and we’re terrified.
Thanks so much for reading/listening.
With love, rage and solidarity.
Links to actions, resources and info: https://linktr.ee/ash_tronomy_
Audio version: https://www.instagram.com/p/DKH1gzKIsh5/