Fifteen years ago, I co-founded Touretteshero as a creative response to the increasing impact that my tics were having on my life. I also started writing this blog. Over the years I’ve tackled some tricky topics, both personal and political. I’ve found the words to describe my changing mobility, reflect on the impact of increasing pain, talk about the emotional impact of hate crime and most recently, detail the risky heart surgery I had in March. I’ve also written about the dangers of ableist political ideologies, failing systems and normative supremacy.

But to date, this has been the hardest to write because it’s about the future of my career and the company I care so much about.

I’m profoundly sad to say that as of today, I’ll no longer be able to do my job as co-artistic director of Touretteshero. While I hope this will be resolved quickly, I want to make it clear that it’s solely due to a recent decision made by Access to Work about my support. This post explains how and why we’ve ended up here.

Two years ago, during keynote at a British Council event in Istanbul, I said:

“I’ve always felt a sense of urgency with the work I make because I’m acutely aware that the support I need to do it could be withdrawn at any moment.”

Earlier this month, while still recovering from heart surgery, my worst fears came true when I received an email telling me that my Access to Work support is being cut by over 60%.

Access to Work provides the practical support working disabled people need to do their jobs. I’ve been using it since 2010, and it’s helped me keep working at times when even I wasn’t sure that was possible. It funds my full-time support worker, along with accessible travel, and specialised equipment related to my work.

My requirements are complex and I need round the clock support to keep me safe. I make constant involuntary movements and noises, I’m a wheelchair user, and I have seizure-like episodes on a daily basis that need immediate intervention to prevent serious injury. I need help typing, help with personal care, with eating and with moving around. I’m in constant pain and the medication I take significantly impacts my memory and energy.

I’m only able to run Touretteshero, a successful and growing arts organisation, because of the skilled support and specialist equipment Access to Work provides.

My career has flourished in ways I could never have imagined. Whether it’s performing at the Sydney Opera House, holding incredible events for children at Tate Modern or making our BAFTA nominated sitcom pilot, it’s all been dependent on having the right support.

In 2015 the Conservative government introduced an annual cap on the total amount of support anyone could claim through Access to Work. Since then, I’ve received the maximum amount – this reflects the complexity of my requirements and the demands of my job.

My Access to Work support is reviewed annually and I submitted a renewal application last July because I knew there was a huge backlog, and I wanted to make sure my support remained in place without interruption. Despite this, when my last award expired on 25th April there was still no decision for the year ahead.

As the days passed, I got increasingly anxious. This intensified when I read accounts of Access to Work whistleblowers saying new ‘operational changes’ to Access to Work would come into effect on 6th May 2025. These were reported to include making it harder to get funding for support workers, and new restrictions on their rates of pay, regardless of the level of skill required.

When the email from Access to Work landed in my inbox saying my award had been approved, my first reaction was one of relief. But reading on it quickly became clear that what had been approved didn’t reflect what I need or what I’d requested.

There was no clear explanation for the huge cut in support and there were several significant problems with what was awarded, making it completely unworkable. For example, they proposed an hourly rate for my support worker that would be less than minimum wage once employment costs are covered, and they completely ignored key elements of my request. I get the strong impression that they completely ignored their own guidance and policies in how they’ve dealt with my case so far.

Floored by this, I burst into tears, immediately aware of the implications of this decision on my work, life and financial security. I can’t work without appropriate support, so this email from a stranger was in effect telling me that my entire career is at risk. I feel a surge of panic and the prick of tears every time I think about it.

Today I submitted my ‘reconsideration’ request to appeal the decision. I had support from Decode who’ve helped me understand the confusing process. I’ve also taken legal advice and will explore this further if necessary. So far, dealing with this decision has taken up about 83 hours of Touretteshero team time – time that should have been spent delivering our creative, research and solidarity programmes.

As a proudly disabled-led company, several members of our team use, or are waiting for, Access to Work support. Any changes to this vital equalising scheme will hit organisations like ours particularly hard, both in terms of the cuts themselves and the hours spent challenging the decisions or navigating complex systems – practical and emotional labour our non-disabled peers don’t have to do.

I’m lucky that my colleagues understand these pressures and can help share the strain, but I can only imagine the devastating impact decisions like this would have on younger disabled people or those in less supportive working environments.

My initial personal shock has turned into grave concern for the disabled communities I’m part of. The leaked changes are hugely significant, and while my understanding is that they’re currently paused, their intentions seem very clear. If the changes are introduced as planned many deaf, disabled, neurodivergent and chronically ill people will face losing their jobs, careers and livelihoods. The fact that this is happening under a Labour government is a shocking betrayal of everything they’ve ever stood for.

When Access to Work works well it’s glorious! It helps level an uneven playing field and is something we should all be proud of. It gives working disabled people like me a fighting chance and means we don’t cost more to employ than our non-disabled peers.

But it hasn’t been working well, and it’s become incredibly slow, with a backlog of 60,000 working disabled people waiting. At the same time, minister after minister trots out lines about ‘getting disabled people into work’ as a way of justifying cuts to disability benefits. All this while cutting the very support we need.

I’m writing this post because I want to make visible the agony that this decision is causing, and because without it my life and career will be very different.

To our partners and funders, I once again ask for your support and allyship as we navigate ableist systems that are failing those they are supposed to protect. We have an incredible team who will keep working in my absence, so many of Touretteshero’s projects will continue uninterrupted.

Keir Starmer says Labour is “the party of work”, so if this is true, I ask, why is it that for the first time in fifteen years I’m being forced out of doing a job I love because of a decision made by the DWP under his watch?

I desperately want to concentrate on doing my job, on growing my company and supporting other disabled people. Instead, I’m having to use all the time and energy I have battling for the basic support I need to work. There’s no clear timeline for how long the reconsideration process will take, but I’ll keep sharing my experience with you here. Whatever happens for me personally, there’s a deeper issue at root here – the fundamental failure to value the lives of disabled people.