From the Barbican website: “ Jamie Hale performs NOT DYING in which they recount their full-circle story of progressive disability, from the agony and gracelessness of threatening death to the jubilance and defiance of survival. To follow, D/deaf and disabled artists expand on the selected themes of anger, fortitude and joy in short sets of music, dance and spoken word. Together their Pit Party recreates deeply personal experiences rarely represented on stage in a spirited, celebratory atmosphere.
Developed through our OpenLab programme, NOT DYING came into being as Hale began experimental medical treatment. Determined to confront and dismantle barriers so often encountered by disabled people, their solo intertwines video and narrative to thought-provoking effect. The vibrant second-half showcase curated by Hale completes CRIPtic.”
An image which sums up what I am trying to achieve with my most recent project, All my Bad Work. I have been in a pretty bad way due to physical and emotional exhaustion ( I have to admit resisting the rest I need due to both stubbornness and the thorny issue of self-worth) and as a result collapsed in to a depression which has had me crying profusely.
Here’s a technically inept shot of my mother and I - it’s out of focus, the highlights out of the window are blown, the composition is out of whack and perhaps the most shaming, the gap in my front teeth is showing ! I felt uneasy about posting this because it meant that I, a 56 year old woman, went to my mother crying like a wounded child in need of a comforting hug. The shame I feel at not being able to magically pull myself together is extensive.
I decided to get my camera to document the moment. I was in hurry to catch the authenticity so instead of setting up a tripod placed the camera on a chair on top of a pile of unfolded clothes. The resulting image captures mum and I laughing as we realised that I faced the lens in entirely the wrong direction. The air was cleared and I wiped away my tears, smiling.
There is the the gap between the stories I tell myself and what is actually happening. Humour is an opportunity, reminding me that the ridiculous is always close by.
More from my portfolio of photographs, All my Bad Work, where I share things I usually don’t want people to see, mostly because of shame. As much as I want to ignore it a lot of my conditioning around social acceptance comes from looking a certain way. I have recently had a dramatic flare in my chronic ill-health symptoms leaving me fatigued and in pain. I have been talking photographs of my environment and of myself. I decided to juxtapose these images with snap shots of me as a child, as a young woman, and earlier in my Lyme Disease journey where I look healthy, happy and vibrant.
This has been a pretty painful experience and I still wonder if it’s a good idea to explore my illness trauma this way. I’m very much in two minds about it. My other concerns are that these juxtapositions are too on the nose, that there is little room for interpretation and that they are just too damned miserable.
Anyway for all of this I still feel the pull to carry on with the creative adventure I find myself on.