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 door is open, reversing I seek to bump my way up the small step. It is painful and I get stuck on my first attempt, but this is the only way in and I persevere. I check out the two rooms I can get to, but there is no-one.
There is no reply. I am actually three minutes late, having had to find a wheelchair accessible route around a flooded subway. I told everyone I would be here for this second consultation, but there is no one waiting. I roll as far as I can towards the sound of voices and call out again. Nothing. There are steps at each end of the entrance hall.
I wait, I call. Eventually I decide to leave.
A staff member strolls in and says that the meeting is not in the accessible room we used last time, but up a flight of stairs. It is suggested that I should be able to get there and a second person joins in the process of persuasion. These two women volunteer three absent men to lift my powerchair. They volunteer one to make a ramp for a steep flight of six steps in a small space. Several other badly informed access suggestions are offered. They are unsafe, undignified and unworkable and I refuse.
The ladies make it plain they find me uncooperative.
I am persuaded around to the outside right of the building to discover small steps and flights of steps not navigable in a powerchair. I am then led around the outside to the left, to further flights of steps I cannot navigate. At the top of the steps a man joins the ladies for a conversation while I am left waiting. At one point I hear him say no, the lawn is waterlogged; I can see that for myself.
It is cold. One of the women comes to suggest that I try the right again. At my less than enthusiastic response she walks away. I have had enough of the farce. Disappointed and offended, I roll home.
Later I get a phone call. The word apology is mentioned followed by the accusation that I was late; the speaker sugests that the inaccessible room is justified by my being late (three minutes), and the allegation that no one was certain I would be there. It is backed up by the assertion that since a lot of people in wheelchairs do get out to climb stairs it was not unreasonable to assume that I would too.
Considering the fuss I have been making about having an accessible meeting room, I wonder on what grounds the speaker feels justified in holding this preposterous opinion.
Since no-one told him I was there, the man making the phone call (same man who called the meeting), does not actually accept any fault, repeating that the meeting started on time and I was late.
I heard the apology word but I cannot accept it, I reject the guilt he tries to lay on me. This feels so much like the behaviour of an abuser blaming a victim and I refuse to be the victim.
Who or what kind of
leaves such a bad stain?
How sincere is an offered
delivered as a command?
How valuable is the word
backed up with accusation?
How much are empty
Saturday 10th November, Peter Catmull Theatre, Hythe: instepdance.co.uk
Thursday 29th November, Pavilion Dance, Bournemouth: paviliondance.org.uk
The Incredible Presence of a Remarkable Absence is the wonderfully apt title of Lila Dance's new 50 minute re-imagining of the world created by Samuel Becket in Waiting For Godot.
Entering the black cube of Salisbury Arts Centre's Main Space after the interval, the semblance of low mist at early dawn swirled from the dust covered floor. Four characters entered in hats of the pork pie/trilby/tweedy type and carrying small hessian sacks that spoke to me more of migrant hopefuls than Becket's shabby-chic end-of-the-roaders.
But the patterns on the floor as these eloquent bodies moved through the space, drew me in. The dancers connected with individual audience members, growing an intimate sense of involvement as they each revealed their peculiar personalities. Solemn or sad faces and sudden mood shifts created the uncertain atmosphere, but the Hat Dance made me smile and soon I too was involved in the waiting.
Swung between fragmented text and incredibly fluid, connected bodies I was drawn ever further into the stillness that is my own personal mode of waiting. The burden of these four uneasy characters killing time before my eyes, became my burden. I felt somehow in danger of loosing myself under the weight of it.
Disability, interdependence, manipulation, tenderness - issues that fought for attention while I watched, waited and absorbed movements that bypassed any kind of reason or rational thought, linking directly to my instinct and emotions.
By the end it seemed I had journeyed somewhere precarious and was not sure I would find my way back, my headspace now haunted with supplementary images of Munch's Scream and Kierkegaard's slightly odd love-letters.
Heavier than the pre-show handouts indicated, it really needed single billing. I needed to create space around it and in so doing, risked loosing sight of the humorous and sensual 'Not About Love' duet that had entertained me before the 20minute interval.
I am changed
or am I? Is it
my love that
or your love
that sees me
I am changed
or am I? No, or
Yes. And yes
I am changed
of how or why;
Shambolic as it turned out to be, my London 2012 day was an accidental success, so sitting in the dark with a dubious view of the Queen Elizabeth Hall stage, the edge of my apprehension was blunted by an ok exhaustion.
My first impressions of a group of murderous sticks served to reinforce the stereotypes generated by my crutches Fred and George; I sent frequent glances towards the putative security of the exits.
Nameless as Claire Cunningham's crutches were, they still managed to sign Fred and George menacingly in my direction until the magical moment when Claire deftly dismembered Fred. Secret joy bubbled in my throat, as I went on to see her pulling sticks to pieces, with calculated intensity.
The primitive and Oz-innocent scarecrow she put together with sticky tape could have been delicious revenge, but Claire's poignant, haunting words and powerful dance indicated a totally different relationship.
The joyful bubble burst into metaphorical tears as my heart ached with her exploration of loneliness and isolation.
The happily-ever-after option hinted at by injections of humour, was, like me, left behind by whimsical mood shifts that took me full circle back to my own relationship with those uncomfortable, impersonal objects I name Fred and George.
Nit-picking, I'm going to say that some clever and very beautiful stage design at times outstayed it's welcome; one lengthy, intense background sound bullied it's way forward to painfully dominate my headspace and a too-long age of writhing about on the floor in the semi-dark left me thinking of my missed train.
Apart from these small issues of timing, this was as polished and professional a performance as anyone could have have wished for.
And a magical glimpse into life's lonely-moments that we can all, one way or another, identify with.
I arrive with baggage.
The venue does nothing
to release me into
it's offer of magic.
Servants of archaic
bricks and mortar send me
hither and thither. With
smiles and apologies,
I'm set free in a dark,
steep cavern to await
the Menage a Trois.
So many wheelborne,
give this old edifice
an unexpected weight.
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
On the road to equality, I often feel strangely disempowered by the process of Disability Equality Training. Why is it only the temporarily non-disabled who get offered a training opportunity? And why only on occasions?
I rather fancy the idea of some training myself. Not exactly the same kind of course, but there must be skills I could practice in order to combat the negative effects society has on my moral and there must be advanced skills I could use to influence or change the mindset of those folk who never get the benefit of expert guidance.
I just don't want to leave something so important to me totally in the hands of others, even if they are experts; but I do like the idea of being proactive, as well as the possibility of making a more subtle contribution to equality.
People who suffer trauma through accident are offered help to find ways to cope. Society is frequently the accident that traumatises disabled people, but at best we are offered nothing more than passing, sympathetic acknowledgement.
Years of feeling like a leper have taken their toll, I want to be more responsive and positive to the people who have actually taken equality onboard. And with those who haven't got there yet, I'd like to find creative ways to take the initiative, I do rather like the idea of having more control.
Rolling in to a lift I need
space to turn around,
like the wheelless do, I prefer
a face-front exit.
Equal opportunity needs
Wheelless take turning
for granted, without the need for
negotiation. Just a quick
foot shuffle, head turn;
on the spot, no-brains-cells-needed,
My new skinny-wheeled powerchair doesn't seem to be fussed about getting its controls wet; I'm starting to believe that they might actually be weatherproof. Chunky-chair would splutter and stop if I neglected to wrap the joystick and control panel in plastic protection.
Chunky's wheels however would take rain in their stride, and were never phased by leaves on the road. Not so with the skinny-wheels. That slightly oily surface that glosses city streets on rainy days is a factor to be reckoned with and decomposing leaves a decided hazard.
But skinny-wheels' ace is never leaving me stranded. Masses of battery capacity plus the ability to convert to manual gives me a safety-net; security I have not had in almost 15 years.
Play or pass? Who am I today? Slim or chunky? Pumpkin at midnight, or 24/7 party animal? Am I in a rush, or can I take time for a relaxed stroll? Do I want city slick, or the off-road experience?
Working different wheels is far more significant than wearing different shoes; I'm getting choices that would have eluded me mere weeks ago.
If dependence on wheels shapes my personality, am I about to discover whole new sides to the Chairborne Identity?
Yesterday I forgot
to recharge my battery.
That should mean I'm grounded,
waiting and kicking myself.
Today though I'm out
free; I have a spare
to fall back on. Planning
tomorrow has never been
this easy. The prospect
rears on it's hind legs
to tantalise and
I should give you my car-keys, you could park my car anyday.
That's amazing, I couldn't do that with a wheelchair.
You really can get around in that tiny space, well done.
And I boil. Spontaneous anger drives me to growl:
Carkeys? Hand over your spine, I've got wheels of my own.
You are so clever walking; I couldn't, not with those legs!
And: Congratulations, you really do work those legs well, amazing you don't even fall over...
There is no real logic to this rudeness. I wasn't born with wheels and there is a skill to living and working with them, so why do I get so offended when wheelless admire my dexterity and adaptability?
Why do I feel so patronised? Why can't I stay cool and offer a lighter reply?
Why have I not developed skills to prompt people to rethink the way they see me?
Thank you, I do specialise in Ferraris, but could probably manage a Bugatti...
No, it does take skill, practice and a brain cell or two...want to give it a go?
And: Yes, I am rather good at this, for a female I have brilliant spatial awareness!
When somebody opens the lid and the opportunity for change presents itself, why are we so obsessed with the shape of the box that contains us?
I used to take words for granted
and not just because I can read.
I used to recycle, but not any more,
it's an option for folk with both feet on the floor.
I used to just drive on my own,
without the kerfuffle and fuss.
I used to enjoy going out for a meal,
aware how much fun spontaneous feels.
I used to be tall; wear a hat,
take the train to town for a show.
I used to be free to roll over in bed,
but now I'm supported by cushions instead.
I used to air-kiss with my friends,
propel, with my hand on their back.
I used to be one of the good and the glad
now I am "merely" the chairborne; the bad.
Lying in bed without my wheels, it occurs to me that I am semicyber, but being without them does not free me from their impact. And these times, out of the public gaze, have no impact on the way society views me. Cyborg or cyberbodied, in the public consciousness a chairborne entity is 'bound' to it's wheels.
Here in Japan where I have almost no Japanese, I am freed from any negative feedback regarding my wheelborne presence, by my own lack of understanding. In that way I am freer to create and express my own identity, to find my own eutopia/heterotopia.
With no way to penetrate the polite veneer of Japanese society, I have no access to the can of worms that must inevitably wriggle under its skin.
Nevertheless I retain my optimistic view of the Utopian. Japanese public, social interaction seems to function in a universal way, working for those lacking disability as well as for those with.
Is this why I'm finding it hard to find any real traces of Disability Culture here?
Over the Rainbow Bridge,
this time in the glow of
bright lights, Tokyo Tower
defying it's age, gleams
a juicy orange spike.
Tokyo Wheel, as it shrinks
into the past, colour
changes, pattern changes.
Tokyo winks and sparkles,
welcomes with no trace of
irony. The Universal
Design Museum is
closed. A power saving
Ok. I've been here 6 days, this is blog number 5, they all sat frustrated, unposted, on my iPad while I attempted to master the technology using unfamiliar tools.
How do I monitor the size of my images? Resize? Crop? How do I convert .png to .jpg? I guess I will have figured it when I post this, but the Greenroom blog will be out of sync with my tweet...
I may use wheels to augment my body; I may long for a cybersuit, or an avatar, so that I can run and climb and swish a skirt, I enjoy using the technology, but what can I do about my inability to think computer-think?
Yesterday I rolled out in the sun to explore Hibiya Park. The entrance is cobbled and painful to navigate and last year soggy pathways also limited my ability to move around. Access has been greatly improved. The park is bigger than I had imagined, but actually last year's accessible bits were probably the best and most traditional; with a cybersuit, I would have known that already.
The cybersuit needs more development; the Japanese guy testing it out in the French Alps will actually be carried by it's user. The guy lacking the disability will have his strength augmented. I guess we've all heard that story before.
In Marunouchi Building
point a host of decorated
figures. Onwards, upwards
they seem to say
through the eyes of
Japanese - crossing
educating the world;
artistic expressions with