UPDATE. Access to Work? Access to…

Image credit Jonathan Birch

We were delighted to read the latest blog from Touretteshero –  ‘Access to…CHEERS

A positive result for Jess, who has recently had her access claim approved, but her concerns about the application process are still all too relevant for many other disabled artists.

In March 2014 Touretteshero received an Unlimited Research and Development grant to devise the companies first full length performance ‘Backstage in Biscuit Land’ (BIBL). Thanks to additional crowdfunding, this resulted in a sell-out tour, which received rave reviews at the Edinburgh Fringe Festival, a second tour for Spring 2015 and is attracting audiences overseas. We have been overjoyed by reaction to the work; it epitomises the ethos behind Unlimited which celebrates high quality artwork and seeks to attract wider audiences to work by disabled artists.

But (why does there always have to be a but!) there are still barriers which prevent artists from taking their practice to the next level and fully embedding their work into the cultural sector. Jess Thom, aka Touretteshero, co-founder of the eponymous company has recently posted a series of blogs which provide a revealing account on her experience of negotiating Access to Work support. Her latest blog ‘Access to Tears’ highlights the astonishingly arduous process which disabled artists are subjected when seeking governmental support to work, and highlights systemic issues that effect disabled artists across the UK.

As Jess explains;

‘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…’

‘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…’

To read the blog in full please go to – http://www.touretteshero.com/2015/01/24/access-to-tears/

To get involved in the conversation:  #StopTheChanges and #ILoveAccessToWork.


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