If you have read Colin Hambrook’s interview with me (‘Surroundings – a journey into the known’, in the ‘Opinions – latest interviews and reviews’ section) , you will have seen a detailed summary of my R&D immersive arts project. If not, please read it, he is a skilled interviewer and has got more information out of me than I originally thought I possessed.
Not for lack of trying, I have been out of action in the ‘Art World’ since my spinal operation, back in April 2017. And in October 2018, I finally got myself a small grant award from Arts Council England, after my third attempt at resubmitting my application. My determination sharpened from learning to be a persistent nuisance and prolific phone caller to the DHSS, after rebuffs, refusals and reconsiderations for ESA (Employment and Support Allowance), PIP (Personal Independence Payments), mix ups with Tax Credits overpayments and housing benefit shortfalls. Anyway, I had what I felt was a great idea for an immersive multimedia artwork and I finally managed to hone my proposal in the required format and get just enough funding for costs.
If you have read Jo-Anne Cox’s blog ‘The year long funding application!‘ (on the DAO blog page), about her year gaining her Arts Council funding, you will understand more about how difficult, frustrating and immensely tiring these applications can be – even if you are fortunate enough like Jo-Anne to have access support.
Finding time throughout my own ‘year long funding application!’ to set up the structure and possible deliveries for my project was hard work. Particularly when feeling fatigued during my on going post-operation (semi) recovery. There was also the strain of constantly having to contact the DHSS, or attend hospital appointments that would often sap my energy, confidence and enthusiasm.
In addition, there were issues around artist payment for myself and the precipice created between the possibility of making a decision to go back to work, when not capable of doing so. Even working part-time for 16 hours a week was too much for me. I can only manage my mental energy and physical resources sporadically and for limited time periods. So I opted not to receive any payment for myself. This is an issue for many disabled artists I have worked with. On past projects, when I was working full time, I wanted to pay the disabled artists I worked with but many of them did not want to jeopardise their benefits, particularly if they were on ESA payments. And more often, disabled artists practise their various disciplines on a voluntary basis, claiming their expenses as and where they can.
Before August 2016, I only had an invisible disability (epilepsy). Since my five and a half hour spinal surgery I now have a visible impairment, as a wheelchair-user . An operation for a rare rupture of the spinal chord lining, rendering damage to my central nervous system; causing loss of sensation in my left side waist down, particularly my left leg, has left me with unpredictable movement and balance.
And since this more visible impairment, I have been by circumstance, forced to see my life differently, particular when out and about at a two third height amongst the ‘uprights’. Somehow, this particular vantage point seems to reflect what we all share (some more so than others) from the aftermath of our 2016 national referendum – not a million miles from the speculation in my head when waiting for my own physical situation and diagnosis.
So, I empathise with everyone feeling caught up in our shared, protracted political referral for an informed decision from our parliament, as to whether we get a seamless transition from European Union membership to ‘independence’. Somehow, this is a constant reminder of the fears and frustration I had to go through before and after my operation. Would I receive a seamless transition from hospital to home? No. And all this has made me hyper-aware of my changed surroundings. I have only been progressing my arts project ‘Surroundings’ for just over a month and a half and people I have interviewed, have told me how important their surroundings are to them and how the circumstances surrounding them, have shifted into a state of flux.
In short, the last two years have been rather a struggle. But somehow my creative energy propelled me through and I am finally engaged on my ACE funded artwork, to which I would very much appreciate your interest and feedback. So, please read my interview with Colin Hambrook to find out more about my immersive artwork ‘Surroundings’ and the discourse around the subject matter. And over the next 6 months I will keep you up to date through my blogs.