Shortly before my emergency pacemaker operation at the end of March, I had a meeting with a couple of my colleagues to talk about what should happen to our company if I didn’t survive the procedure. This conversation was a lot to take on at that time, specially as it came so soon after Liz’s death, but it felt necessary, and the result was a set of principles that I hoped would ensure that the spirit of what we’d created remained healthy and strong if I didn’t make it.

Fortunately for me the operation went well, and I’ve been able to spend the following weeks recovering. However, just as things were getting back to normal I received the devastating news that Access to Work was suddenly and unexpectedly cutting my support by 61%.

Since sharing this, I’ve received moving, heartfelt and encouraging words of support from friends, family, colleagues and allies alike. What’s struck me most about this is that many of these beautifully written messages of support sound a lot like what people might have written if I had died. But rather than a physical death, what Access to Work has done represents the death of my career as an artist and my independence as a working disabled person.

Shocking as this has been, I’m refusing to go quietly, so last weekend we made this video to explain what was happening to me and to many other working disabled people up and down the country:

Please give it a watch, and do all the usual YouTube stuff – like, comment and subscribe and share it with as many other people as you can.

The green paper consultation I mention closes at the end of June and it would be great if you could add your concerns here. 

The rest of this post is the transcript from the video in case that’s useful. It doesn’t include my tics so insert a liberal scattering of biscuits and hedgehogs as you read it:

Video Transcript

Keir Starmer says Labour is the party of work, equality and fairness, but less than a year after the election, changes at the Department for Work and Pensions have forced me to stop doing the job I love.

My name’s Jess Thom.

I’m a disabled artist, writer, and performer.

In 2010 I co-founded a Community Interest Company called Touretteshero.

The goal was to use my experiences with Tourettes to help others, and to change the world, one tic at a time.

Fifteen years later I’m the co-artistic director of an award-winning arts company with global reach.

None of this would have been possible without the support of Access to Work, a programme that helps disabled people start or stay in work.

For me, it’s provided specialist equipment, accessible transport and allowed me to employ a full-time support worker to help me with practical tasks and stay safe.

Access to Work works brilliantly because it’s personalised and flexible.

And for every pound spent, the government recoups £1.48 – the social return is even higher.

We’ve built the most accessible company possible, but I still need support at work.

So last month I was devastated to learn that, effective immediately, my support was being cut by 61%.

Without it, I can’t work.

And I’m not alone. Many other working disabled people are having their support slashed too.

My job hasn’t changed, my disability hasn’t changed, so why has my support changed?

Starmer describes the system that helped shape my career for over a decade as ‘indefensible, economically and morally’.

But I wonder, does that make me indefensible economically and morally too?

Because so far, the only outcome of his promised reform is that I’ve been forced to stop working.

I’ve been under intense pressure to justify the support I need for years. Now, under Labour, I’m having to fight for my job and prove my worth. It’s humiliating and it has dangerous implications for us all.

The consultation period for the government’s pathways to work green paper closes at the end of June.

It’s vital that we all respond, if we don’t act now, later they’ll say, “Noone told us in the consultation”.

We must hold our elected officials to account, and demand not to be ignored. Let them know what you think now. There’s a link below for a step-by-step guide on how.

Access to Work can be glorious, and it’s worth fighting for.