Creative Director Clare reflects on some of the 'stand-out experiences' she has had as an artist living with Myalgic Encephalomyelitis (M.E) & Postural Orthostatic Tachycardia Syndrome (POTS).
P'ART ONE: THE DERAILMENT BEGINS.'
I've now spent more time in my creative career as a disabled artist/practitioner than I spent as an able-bodied one, so while my experiences of that transition are not necessarily unique, I do think the fact I've lived through that particular challenge in my own life provides me with something of a different vantage point on the creative sector, including how it 'handles' disability, access and inclusion more generally.
I've literally had first row seats,*a restricted view* and a backstage pass within the realms of theatre and film production for over 20 years now, and it's because I have lived, worked, learned and even taught from both an 'able' and 'disabled' point of view, that the insights I have are often based on this - often jarring - juxtaposition; which has left me with feelings around inclusive practice that are quite profound on one hand, and quite unremarkable - or just all to common - on the other!
I've been a professional, mostly self-employed, partially medically retired freelance Creative Director/Producer for about 24 years now. At 18 I was still comparatively healthy/able bodied and successfully self-employed as a beneficiary of a Prince's Trust Grant, running my first creative production studio, and was also a qualified youth support worker, fresh from doing theatre and media studies 'A'Levels at my local secondary school.
By age 22, I was starting to feel the drain of an ever increasing digital takeover in my life, spending 60-80 hours a week staring at an editing computer and watching the world through a lens. I liked making films, but not really the sterile 'commercial' kind that paid the bills and gave me 'corporate' headaches, and I missed people and creative teamwork, so by 24, I had became a mature student, returning from the world of small scale videography to my original love of theatre and performing arts. I achieved a first class honours degree in Drama (with community practice) and wrote my undergraduate thesis on 'Applied Theatre & Conflict Transformation'.
Little did I know then what was coming around the corner to hit me! But on the day I picked up my dissertation marks, the wheels came well and truly off. Everything was going exactly as planned - better than I'd imagined really - in my career as a freelance theatre facilitator up to that day, and I was loving the new angles it'd added to my life. But all of it changed in an instant when a careless driver slammed into the back of my stationary car on July 12th 2010. My body broke.
Three Years and countless unsuccessful treatments later, I was finally diagnosed with Myalgic Encephalomyelitis (M.E) A complex, multi-systemic neuro-immune disease; and while that is a story of other multi-systemic failings entirely, it is not the focus of this blog, so we'll save that for later!