It was a relief to close my eyes and go to sleep last night – they were sore and tired from the tears I’d been shedding hours earlier.

This morning I’m in a reflective mood, determined to write about the circumstances that once again left me sitting at work with tears flooding down my cheeks while my non-disabled colleagues got on with what they were doing.

Ironically the reason I wasn’t able to get on with my job was that I was on the phone to Access to Work, the scheme that provides the practical support that disabled people in employment sometimes need to fulfil their roles.

I work full time across two organisations – a London-based children’s charity where I’m a project manager, and Touretteshero, the creative organisation I co-founded five years ago. In the last year the success of Touretteshero, particularly our stage show Backstage in Biscuit Land, has led to an increase in the paid performing and public speaking work I’m being asked to do. And increasingly this work is international. I’m a wheelchair user because tics in my legs affect my mobility – also several times a day I experience ‘ticcing fits’, sudden seizure-like intensifications of my tics. This means I require constant support at work and at home to stay safe and independent.

I’ve recently been invited to give a keynote talk at This Is Progress, an arts festival taking place in Canada next month. I’m due to speak about inclusive practices and accessibility within theatre as part of an event called ‘The Republic of Inclusion’. You’d expect me to be excited by this, and I am, but my excitement is tinged with anxiety because I know that in order to take up this opportunity, Access to Work need to agree to cover the additional expenses of my support worker.

The work is well paid, the festival will cover my flights, accommodation and expenses, but because it’s a small arts event they don’t have the budget to pay for my support worker’s expenses as well as mine.

I’m aware that Access to Work fund similar costs for other disabled people, so I made an application for their support. At the start of December I made the initial call – here’s a summary of the difficulties I’ve encountered so far:

• On my first call I was told I’d have to wait 17 working days (3.5 weeks) just to speak to an Access to Work advisor
• I didn’t receive the call within that time so I called back and was told that they couldn’t find a record of my initial call
• I was required to give them all the same information again, a process that took about an hour and a half because I had a ‘ticcing fit’ half way through the call and had to end it prematurely. When I called back I wasn’t able to speak to the same person and had to start from the beginning yet again
• I received a call back from an advisor several days later. The tone of this call was one of suspicion and hostility
• I was asked why the festival couldn’t pay for my support worker’s travel and accommodation and why the personal budget I’m allocated by my Local Authority to fund my care outside of work couldn’t be used to pay for these in-work expenses
• Despite supplying all the information requested it still took two weeks, three emails and two phone calls requesting an update to get a call back with a decision
• Today, almost two months after my first call, my request was rejected, based on the advisor’s interpretation of the wording in the letter from the organisers. She felt that it implied that they would cover both my costs and those of my support worker, despite my stating very clearly that this was not the case. Instead of asking me to clarify they’d rejected my request out of hand
• The question I then repeatedly asked was “What should I do when the organisers come back to me and confirm that they aren’t able to cover my support worker’s expenses?” This remains unanswered

At one point it felt like the advisor was suggesting the organisers should ask a non-disabled person to do this work instead of me. I got incredibly distressed during the call. I wasn’t just sobbing because the request had been rejected, or because this work opportunity was at risk, or because I felt worn down by the constant phone calls, emails and requests for yet more information.

I was crying because this scheme is crucial to my being able to work, have a career and stay independent.

I was crying because I had to beg, yet again, for the support I need to give me equal access to work and opportunities.

I was devastated because I’ve experienced the incredible positive impact this scheme had when it was working well, before what seem like recent, secretive changes have undermined its effectiveness.

I was sad because I see many high profile disabled people with established international careers, like Jenny Sealey, co-creative director of the Paralympic Games opening ceremony in 2012, having to struggle to get support as well.

And most heartbreakingly off all I look back at the earlier stages of my career and know that I would never have got to where I am now without the responsive support I’ve had from Access to Work. I feel for everyone who’s being failed by this mangled system and for all the young disabled people entering an already deeply challenging job market without an effective support system.

In the phone call today, and in the last few phone calls, the advisor has repeatedly told me that ‘Access to Work is a discretionary grant’. It’s hard not to hear this as a threat when my ability to work, pay my bills and play my part in society is dependent on it. So:

“Dear Access to Work Advisor,

You say ‘Discretionary grant’ – I hear ‘We can take this away at any time’.

Imagine I called you up in the middle of your working day when you’re surrounded by your colleagues, and said ‘I’ve decided to take your income away and there’s nothing you can do about it because it’s at my discretion.’”

This is why I cried.

The impact of today’s upsetting conversation echoed on into the afternoon and into other parts of my work. Here’s how:

I’ve been working closely with a young person who for the last couple of years has been looking forward to becoming a young volunteer. He’s been waiting until he turns fifteen and can officially start helping out. For the last four months I’ve had his volunteer t-shirt folded neatly in an envelope with his name on it under my desk. It’s his birthday this week and this afternoon he came to collect his shirt.

I felt embarrassed to look at him because my face was blotchy from crying. I couldn’t celebrate this moment in the way I’d wanted because I felt exhausted by the phone conversation I’d just had.

After he’d gone, proudly clutching his new t-shirt, Leftwing Idiot, sitting at the desk opposite me, said ‘Don’t let all this wear you down, you should use all the anger, frustration and sadness you feel as a laser.’ As always he made a lot of sense.

So, I’ve shared my experience with you and hope that you can use it to let more people know about these issues. Please use the hastags #StopTheChanges and #ILoveAccessToWork. This second one might seem strange but it’s important that we keep sight of what Access to Work should be – an amazing and equalising service.

The sorry state of Access to Work shouldn’t just be a concern for disabled people. It should bother anyone who cares about equality and fairness, and anyone who wants to be part of an inclusive workplace where difference is valued.

I’ll use today’s experience as a laser to focus me on making things work better. You can help by writing to your MP, signing this petition, sharing your own experience, talking to your friends and challenging the election campaigners who’ll soon be appearing on your doorstep.

Don’t accept the lazy caricature of disability all too often presented in the media. It’s not my condition that disables me – it’s lack of support. I’ll continue to fight for what I need to live and work equally and independently because inclusivity makes things better for all of us.