Missing Arts and Health in Wiltshire. / 4 October 2014
The day dawned; Conference day and I was unable to be there. Before I headed off to Japan, Sue Austin and I had worked together on a LinkUpArts presentation piece for Wiltshire Council. We had held conversations with Philippa and Faith of the Special Educational Needs and Disabilities (SEND) team in Trowbridge. And Sue had filmed.
I researched, wrote, planned and held supporting conversations, designed artwork and edited the whole thing down to around fifteen minutes. I felt a sense of clarity about what needed to be said.
LinkUpArts brought in Trish Wheatley who recorded me reading it because the brief had specified something ready to post online. And I headed off to Tokyo leaving Sue with the task of editing introductions, of including fabulous shots of herself underwater in the famous wheelchair and also of editing the final cut.
My brutal, but necessary edit had resulted in a plan to produce a handout for Conference delegates which would restore those voices that had been excluded from the presentation; voices that had entrusted opinions, emotions and facts to me. Voices that convinced me of the need to educate children, all children, in how to build resilient, fair and kind communities.
I would work on the printout when I got back.
One month later I returned from Japan planning to get together with Sue and Trish to polish the result, discuss presentation and prepare for possible Q&A. And of course, the handout.
Except that I had a virus. Initially it felt like a joke. My tongue was so swollen it didn't fit between my teeth. And my teeth, like a bed of polished knives, were just waiting to shred the offending tongue which was already covered in sores.
Swallowing was certainly no joke, actually it was scary. And I hauled in air with an open mouth, feeling constantly breathless.
Virus don't respond to antibiotics. Bed rest, stress-free bed rest, painkillers and drinking lots were to be the answer. You can probably imagine the nightmare of a painfully slow recovery - well you probably don't want to imagine too much, certainly not the rest of my symptoms.
Conference day and the tongue was still swollen; it still looked disgusting. It still hurt. But I had some degree of taste, I could swallow without too much fear; breath through my nose without the sensation of running out of air, and had a strangely powerless voice that didn't sound anything like mine.
The bouts of extreme giddiness were still taking me unawares, there was no way I could travel to the Conference. I still flagged miserably around midday, and painkillers were just not up to the task.
Sue and Trish worked hard on the finished presentation. The Conference, our presentation, happened without me: I'm confident they did a good job, but I feel gutted.
Unhappy; disappointed for the silent voices.
Please don't close your eyes to me.
One day your young person, the one
you nurtured and facilitated, will be
me - living in a world of ignorance
battling for human rights. Don't fob
us off with 'things are different now'.
Look at disability history. Look at the
current levels of persecution among adults.
Nothing changes, nothing will change
without vision, effort and commitment.
Don't let the person centred approach
die aged twenty-five, give your children
hope of a decent future.
Some time ago when I came here
I was shocked to see this harassed
young mum scream at a weeping child:
if you don't shut up I'll give you
something to cry about. The child
wept louder. Years later I'm now
drawing parallels with the state.
Punishment of people unable
to cope is counterproductive
but this government is bankrupt
of ideas. Blind to options
that promote healthy, resilient
people, seeking only to groom
their victims into submission.
Start here, with education, start
now in the hearts and minds of youth;
give young people the information
they will need to create the kinds
of communities we all want
to be a meaningful part of.