The preposterous assumption that just because some people can get out of wheelchairs and climb flights of steps it's ok to reckon that we all can, has been preying on my mind. With more and more people buying mobility equipment for a variety of reasons that may or may not be associated with disabilty, I wonder how Disability Equality trainers cope with this issue.
I'm well aware that the general public do not register the difference between wheelchairs and mobility scooters: wheels are wheels.
And there is also almost no differentiating between users of wheels - apart from gender. I get mistaken for the oddest of people and I do find it offensive that people who know me and the other people in question, cannot be bothered to register the difference.
I'm not talking about small, hard to spot differences, I am talking about being mistaken for the plump, blue eyed woman with both legs amputated; I'm a size small with khaki-green eyes and both my legs. I also get mistaken for the woman who always travels her powerchair with a walking frame, an assistance dog and wearing a neck brace. I have none of these.
I do have blonde hair long enough to pin up with a variety of trademark chopsticks, yet am frequently mistaken for a short and curly haired woman on a scooter.
What makes all this so ironic is that I'm currently working on material for an exhibition called 'People Like You'. The phrase, originally offered to me with the words: 'should be taken out and shot' is now intended to highlight our common humanity, infer equality and play with the implications of the word 'like'.
It isn't meant to suggest that wheelborne are all much of a muchness and indistinguishable from each other.
Hey guys it's me! No really,
I know I'm wearing wheels, but
honest, it's me and I'm not
sporting a wig. I haven't
shot the dog, or had a change
of personality. I'm
not wearing coloured contacts,
or borrowed legs, I'm not the
grumpy one who runs people
over. And I'm not the one
for screwing the
Hey guys, it's me.
The 'new man' will be Kosta; not from coffee Costa, but from costa, the botanical noun for rib. Kosta, deriving from Kouros like Eve from Adam's rib, is in essence a clone.
Physically, he should still be recognisable as having the same basic body shape and measurements as Kouros; maybe it is possible that he could still be classed as one of the Kouroi, but he will lack the classic pose.
Kouros, referencing Venus the classic beauty, has no arms. Kosta also has no legs.
Like Kouros, Koure has no arms. Nothing at her shoulders, just the frayed edges of her torso; arms are not definitive of Kouroi in the same way that legs are. Kouros and Koure stand in the classic pose. Without one leg to place slightly in front of the other, will Kosta need a new label?
Where will this difference, this diversity, take Kosta? The imagination that might replace limbs will not have free reign, my imagination will already have made visible the roots Kosta has grown to survive.
Where might this take you? What kinds of links will influence how the 'new man' is described?
He is only soft sculpture, but how might Kosta be classified?
So many people I talk to seem to feel that the Paralympic classification system, Lexi, has given them permission to be more open with their curiosity and speculation. Some of the discussion has been very blunt.
A part of my 2012 legacy that I cannot ignore...
Where does humanity end?
How many variations
do we need before we
decide to draw the line?
To offer less, expect less;
to look away instead.
How much life can be
before we embody
with a less than human
right to equality?
Epistemology has evolved via Web 2.0 (Wikipedia!) to entertain the departure from the classical perception of what is accepted as knowledge, to a collective perception of a shifting range of possibilities of knowing.
Inching back from my anxieties about social networking, I'm wondering about the positive possibilities it flags up for the whole issue of diversity.
If Diversity is a concept currently shaped by classical ways of knowing, by the human capacity of mind to encompass variations and label categories - to create order and the storage of retrievable information; and this is a task we are increasingly delegating to software programmes (which we currently attempt to construct in our own image), what will happen to our concept of diversity as we build the consensus-based creation that gives equal weight to facts, opinions and values?
What would happen:
If formal education embraced the epistemological changes that new technologies open windows on?
If we could be comfortable without the groups and categories, safe in the knowledge that nothing would get lost, nothing would slip through our fingers?
Would we still feel the same need to create the same hierarchies, impose the same value judgements?
If epistemological developments are allowed to shape our educational resources, increased storage and harvesting capacity could herald changes in the way we perceive and accept one another; in the way we understand or have a need for, the concept of diversity.
And would that concept flourish and evolve or become redundant?
Picking up dropped stitches
we gather the concepts
from our pasts and knit them,
the coat of many colours,
into the garment
that will clothe our future.
Back in 2006 'Bare Boards and Blue Stilettos' was an uncomfortable installation immersing the audience in faulty communication and uncertain access. I began working on it in 2005, it was my first major piece of Disability Art.
Fanny the (animated) wheelchair, never made it beyond BB&BS, but Jessie...
Jessie seeks to be 'People Like You' - she was my first soft sculpture, born out of despair (unlike Kouros and Koure), reaching down into the depths to make her connections. When '(it might be disability, but) it's Still Life' was exhibited at Holton Lee in 2011, Jessie was intended to join Kouros and Koure, lying in the ground beyond them, her searching roots just beginning to show.
I began working on the roots, but somehow it never came together. I had moved far from Jessie's dark despair and I kept wondering if it was all too personal. Would Jessie speak to anyone else? I tried to put her back in storage, but as soon as 'People Like You' began taking shape, Jessie put herself back on the agenda.
Jessie began in the conflict between my personal, private identity and the face I wore in public. Jessie, unable to stand, sought an identity through symbolic roots, roots burrowing into some other state of presence.
Stitching, I am drawn to link the roots I'm now creating with mobile phones (rooted androids, superusers) and social networking. Reaching into our own darkness, roots become symbolic of the search for connectedness and symbols of that never-in-the-present state most people seem to be practicing.
Between posting, pinning, texting and tweeting, my thought for the day is that social networking could be the Borg and we are all being assimilated, willingly. Eagerly assuming that we are each expressing our unique individuality, are we in fact creating one monstrous identity where each one of us is just one more line of code? Or is it something else?
Lying face in the grass
arms reaching out, fingers
rooting into dark earth,
I am aware of life past;
hearts that have rotted away
from disintegrating bones;
breath that still whispers love words,
lust that still moans desire;
reaching out, seeking me, pulling
me down, calling me in.
And I am aware of
the love lifting me back
home, the seismic shift
in my life, my destiny.
Jessie is looking good. Removing her hair was quite traumatic and I pondered the bald skull a while before deciding that it needed a little remodelling.
On the floor, a half-stuffed torso has joined the various body parts, I need more wadding before I can go further with the sculpture; it is hungry on wadding and I ferry the stuff home frequently. Tied to the back of my powerchair it gives a bulky profile that no-one would guess is a new body in the making.
Rooted people grow on the pages that I am so lucky to be able to sit outside and draw. I need to make the most of every good day.
I've just taken a break to Google 'rooted' in my quest for a name for the new man, and discovered rooted androids and superusers. I need to think about that.
Back in 2006 when Jessie lay in mute protest on her platform bed, superusers didn't exist. I had been drawing rooted people since art school, exploring issues of belonging, connecting and self-awareness, but I still left Jessie's seeking and reaching out as something suggested rather than created in 3D. The despair that engulfed me inhibited Jessie too.
At the time, Disability Arts was new to me and while it was giving me back a voice, that voice was very small and frail, I had yet to figure out how to use it.
Disability Arts found me;
held me spellbound in revelation;
poked and prodded at my strength
until my eyes opened in focus;
until my words made no-sounds,
until my fingers drew protests.
And remade the offer that is life.
The paralysing silence
shattered, and I became
Visiting London with Chinese friends seemed like the perfect opportunity to see the place as a visitor with almost no English; apparently it's supposed to be especially well geared-up for visitors right now.
Approaching the Capital by train, I was a little shocked to discover that my ticket was the most expensive of our party since I did not seem eligible for any of the offers available to the ambulant travellers.
Buying a ticket for a wheelborne traveller, did not alert station staff to the need for assistance or a ramp. No-one noticed me or my access problem. We were in real danger of missing the train, until hurried enquiries, in English, led us to the correct person to handle a ramp.
My arrival in London was totally unexpected; UK train staff might not have any means of communicating between staff, trains or stations?
I was stuck on the train until somewhere on Waterloo station the correct person was found to produce a ramp, and she appeared to be unfamiliar the item.
From Waterloo we wandered towards the festive atmosphere of the Southbank, and chuckled about two gigantic figures, one leaning over from a roof and one climbing up or down the wall of the building. Maybe they were robots? The building was decorated with columns of strange, green plastic bowls and didn't seem to have a main entrance.
Alongside the famous river we saw a lot of word-boards strapped to the railings. And some large empty crates that it was possible to roll through in my chair, amusing my friends. On one of the crates was a picture of brides in White Wedding gowns - one of the brides was a man with a beard and this caused prolonged laughter.
Keeping our eyes open for street art and entertainment, we were aware of posters advertising an evening dance event somewhere in the vicinity.
The multicoloured 'rainbow sandpit' where children were playing, was a curiosity that awakened some concern. Was it natural? Was it safe?
Pretty-girl crocodile, weaving through the crowd;
pointing toes, high then low and counting spaces,
snaking, swaying, dipping rhythms; curls of spine.
Supple bodies, sensuous arms, splaying fingers;
dragon-cousin crocodile: breathless, chanting.
Happy laughter woven into swirls and leaps,
arabesques, pirouettes, and smiling faces.
No special dress, no explanation, dancing
all we need to know.
This is the last in the series. The timing is deliberate - this is my contingency bowl.
In case time and tide conspired against 'Creating the Spectacle!' In case the event was cancelled; in case the worst case scenario swallowed up the adventure and the underwater wheelchair disappeared into oblivion.
But actually it also makes a rather splendid trophy to present, with a fanfare, to all the successful participants of the most carefully prepared and choreographed adventure - the journey across the Fleet.
Sue and the underwater wheelchair, the undeniable stars of the occasion, were backed up, supported, carried, by the skills, knowledge and talents of dedicated teams all totally inspired by her wild idea and persistent enthusiasm.
Like the legend of history, 'Creating the Spectacle!' had no power over the tide; yet forever undaunted, the team completed their mission and this new legend was fact for a day.
And like the red carnations that bloomed over the water and sailed out on the tide, the story will travel, the myth of the chairborne aquanaut will spread and grow as the journey continues.
Lapping relentlessly against
prejudice and preconceptions,
the tide of enthusiasm
rebrands the stereotype,
the metaphor that presents all
and every disability
as cheat or hero, scrounger or
object of pity. Introducing
Individuals, people with
real lives, real hearts, real connections
that link us all into one world;
one people. The diverse glory
of the human race, Homo Sapiens
Sitting in Residence at Salisbury Arts Centre, talking to loads of interesting people is fascinating. I wanted people to be honest with their personal responses and gut reactions, and have been frequently taken by surprise at just how much honesty I'm getting.
I had this conversation with a young person as we were surrounded by Martin Bruch's Bruchlandungen:
How I relate to this is
Like, these are the important bits of your life, yeh?
And these are the bits I throw away, y'know?
The pictures that don't work,
I only keep the good ones.
I don't want to say your life is rubbish, but
its making me think...
I’ve written two blogs since day out in Chichester and not posted either of them, my self-preservation instinct over-riding everything. I need to overcome this paranoia.
My fear is real, but what about the threat? The instinct to hide is a relic from my “dinosaur brain”. Threatened, like the wounded animal, I seek isolation, and I am so easily made complicit in my own marginalisation.
Integrate. Hide. They shout
from behind the barricade
of “Normal.” Is this progress?
Or an offer of safety
until the war is over?
Except this isn’t war.
This financial instability
merely an excuse to mask
the poverty of aspiration
that sees a generation
overwhelmed by its
complexity of knowledge
and its poverty
Times are hard; as a consumer of fringe products, I discover my choices are slowly being eroded by the decisions people are making in order to survive this financial turbulence.
As a disabled person I notice my needs are more openly ignored as people struggle for their own existence.
The hard times are actually the times when I really do need recognition and support, but I am dismayed to find the so called “New Thinking” that is designed to enable the arts to at least tread water, actually offers disabled people nothing except the encouragement to hide.