A couple of weeks ago some colleagues and I gathered round a phone in the Touretteshero office to speak to my newly allocated caseworker from the Department for Work and Pensions about my Access to Work application for the year. My support usually runs from April one year to April the next, but this year, two weeks after it was due to renew, I got the news that my award was to be cut by 61%.

This decision had a huge and devastating impact on me and my company and has meant that for the last three months I’ve been unable to do my job because, without Access to Work, I can’t employ the support worker I need. Naturally, we’ve chosen to fight this decision and, with incredible help from Cathy at Decode, we’ve navigated our way through the complicated appeals process. This led to the renewal application needing to be completed again, which in turn led to our phone call in the office.

Before the call we requested two things – that we were given permission to record it for our reference, and that we had our lawyer present as an observer. Initially we were told neither would be allowed, but when we asked why not, after a pause in communication, at the last minute, we were told that we could do both. The conversation lasted about an hour, and we covered a lot of familiar ground. Afterwards, Cathy, who was on the call, said that it was one of the most constructive assessments she’d ever been involved with.

Yesterday, I got a letter from the DWP confirming that my support was going to be re-instated at the full amount requested. This is great news for me, and I’m extremely relieved by the decision, but there are some significant outstanding issues.

Photo: Róisín Murphy

Firstly, the new package takes no account of the last three months, during which I have had to rely on ad hoc support from friends, family and colleagues just to stay safe day by day. Secondly, not being able to do my job has cost us opportunities at work and put a big strain on the rest of the team. In June alone, we spent 215 hours dealing with the fallout from this decision. Even with the funding now in place, it’s going to take several more months to recruit a new support worker, and we’ll be working at less than capacity until then.

More importantly though, in the process of speaking out about my experience of ATW support cuts, I’ve discovered many other working disabled people who’ve encountered the similar issues. The impact that this has had on others, during a time when we’re all under significant economic strain, has been terrible. This article in the Big Issue provides heartbreaking details of exactly how bad things are at the moment.

At the same time that Keir Starmer’s government have been shouting about how disabled people should get back to work, these cuts have been forcing working disabled people out of jobs and in some cases whole businesses have been forced to close as a result.

Even without sudden and unexpected cuts, the process of applying for and receiving Access to Work support is longwinded, complicated, slow and frustrating. There are currently over 60,000 people waiting to be assessed. What is Stephen Timms doing to help them? It’s currently taking around 10-12 months for applications, like the one I have to do every year, to be processed. Because my new award only runs until April 2026 (9 months away) I should really have started applying for the next one a month ago! What’s the Minister doing to help me?

When it works properly, and I can remember a time when it did, Access to Work is brilliant – it gives disabled people the support they need to thrive in a largely non-accessible labour market without being tied to one particular employer, because support can evolve and follow you as your career progresses. It’s liberating and transformative. But what’s happening under this Government is dangerous and it’s doing real damage. It’s damaged my ability to work, it’s damaged my company’s prospects for the future, and it’s damaged, probably beyond repair, our trust that Labour is a party which champions social justice and equality. What we’ve got now is a supposedly left of centre government that’s pandering to the far-right in the hope that this will somehow magically turn into votes at the next election. It won’t. Keir Starmer has revealed himself as a weak and incapable leader who’s simply keeping the seat warm for Nigel Farage.

I’m sharing this mainly in solidarity with other disabled people experiencing the same humiliation, frustration and injustice with ATW that I have, in the hope that some of what we’ve been able to achieve is useful or at least encouraging. But for everyone else, I want to make it absolutely clear that disabled people are here to stay, that our lives, experiences, skills and imaginations matter, and that we are not disposable.