Becoming A Subject

One of the things about the Internet is its ability to turn your life perspective on its head.  If you read my blog (and, well, you are probably doing that right now), you will know me as, I hope, a powerful independent woman -- hopefully, I come across as mouthy, not afraid to speak the truth, smart, sassy ... you get the picture.

Like many site owners, I make available an email address for you to contact me and, like many site owners, I often trace back referring sites for traffic.  But finding out who is reading your site is something of a mixed blessing.  Particularly when the contact is coming from academia.

Sometimes, I get emails from people who ask if it is OK to use my work.  It is.  As long as you give credit.  Sometimes, it's a note from someone saying that a particular post was helpful to them in a given assignment.  These kinds of notes lift my spirit.  Two things sink my heart: requests for interviews and traffic from course sites.

I no longer agree to do interviews for students who wish to make me and my life part of their term papers.   I don't answer questions any more, either.  You can use my material -- I can't even track whether or not you cite me appropriately, but I will follow up if I find that you haven't -- but you are not getting more than anything that is here.  No, not even if you are a PhD student and my life and work are somehow "critical" to your thesis.   I'm done.  And, yes, I'm slightly angry and resentful about how few of you do your homework, your preparation: reading about disability, disability arts and culture, the disability rights movement, dance, and disabled performers.  I know these academic fields; I know what's out there; I know many of the people who've written it.  Your lack of preparation does not make me feel inclined to trust myself to you -- no matter how ardent your appeal.  NB: that's true for those of you who want to make documentaries, too.

Then, there's course sites.  Every time I see a referral from Blackboard or some other educational course site, I go back and reread the post that has become part of someone else's lesson plan.  I wonder what they are doing with it.  What are people saying?  How does the discussion go?  Would I be horrified?  Yes, probably.  I think about how I would teach the post -- what I would combine it with, what points I would see as critical, how I would facilitate discussion.  Risks I would take.  Language and ideas that I would consider acceptable/offensive.  What I would do about stuff that came up.  I mull it over; hope for the best; close my eyes and try to forget.

Showing up in academia is different from finding that someone has linked to a post or two because the internet links only to your material.  You can find out what someone thinks of your site; you can read the comments.  Sometimes, too, you find personalized stuff about you (or your internet persona).  But that is different.  The internet is a sprawling mess of actions and reactions.  Even when the post is locked, I am happy to find that my work has left my site and become part of a conversation somewhere.

By contrast, academia turns you (or your persona) into a project for study.  It's a difference of purpose.  A difference of focus.  It's not quite a medicalization of a disabled body -- not all academic gazes are medical.  But it does include that same kind of power dynamic.  There's no way to know who is staring.  And how.  There's no way to know what meaning or what kind of value is being read into your life.  You become something someone teaches and other people learn.  You are nothing more than a topic, a passing reference in someone else's education.

And because the world of disability rights is still so new to academia, I fear that I and my blog often land in a hostile environment.  Strange: what the Internet giveth, it also taketh away.

Who Needs It? Label: People Suck

So, I'm sitting alone in the airport -- a small town airport.  I've gone through security a little ahead of my friends, and I am waiting by the window.  A woman approaches me.  "There's a dollar over there.  Is it yours?"  I look.  Sure enough, there's a dollar on a seat two rows over.  I shake my head.  Then, it begins.

The woman asks if I would like the dollar.  I say no.  "No," she tells me.  "Take the dollar.  You can have it."  I respond: "It's yours; you saw it."  "I'm giving it to you...."  At this point, I get a little, well, pissy.  I make it perfectly clear that I don't want to take the dollar.  It is a strange situation after all.  I didn't see the dollar.  It's not my dollar.  But the scene is sadly familiar.  It's like this one from 2008:

Starbucks. Me drinking bad coffee and reading my email. A bright and beautiful teen picks up her coffee. School ended early today; she's with her friends, enjoying the freedom. She fumbles her purse, the change, and the drink. 10c falls on the floor at my feet. I turn to see what the noise is. And just catch her... "Please, keep it. I don't need it." I look at her. She has her whole future in front of her; she thinks she's doing me a favour. I realize how I must seem. There's absolutely nothing to say. Where would I even start? I leave the money on the floor, pack up my computer, and leave.

Just as that frisson of recognition happens, the woman turns to me with that sainted pious look on her face.  "I'll take it," she says, "and I promise to give it to the next person who needs it."

That's the story.  I'm in my wheelchair; I must need the dollar.  This despite the fact that I am in an airport and am travelling (probably don't need the dollar any more than anyone else who just paid for a plane ticket).  Despite the fact that I am carrying a cup of coffee that I just bought (for a dollar).  Despite the fact that, in my mind's eye at least, I look as in need as she does (i.e, like any other passenger).  Yes, it's the disability thing.  I'm needy, because I am disabled.

When my friends come over, the situation shifts -- sharply.  I go from being an object of forced charity to being a human being.  She chats with my friends about the weather and gestures towards me, inclusively, as she talks.  I glower.  The atmosphere dissolves.

Except.  But.

I am furious still with the predatory nature of charity.  So overwhelming, it seems, is the urge to do good that the people who do it cannot see the humanity of those they are trying to help.

Watching Disabled People Dance

So, you are on your way to your first physically integrated performance, but you don't know what to expect or how to think about what you might see.  Allow me, if you will, to offer a somewhat biased guide.

• Relax.  You've done most of your part part by showing up.  Sit back and let the performers do theirs.  There's an unwritten contract in performance.  Both parties have to do their part to make the performance successful.
  
  In buying the ticket, you promise to show up, turn off your cellphone, put away your camera, open your mind and watch.  The performers, in offering a concert, promise to show their best work -- work that transcends the ordinary, to honour your intelligence and spirit, to perform and not just execute.
• Don't worry about meaning.  Even if the dance follows a story line, you can create your own meaning.  In fact, you are pretty much expected to create your own meaning.  It's like reading a poem or a book.  Or even seeing a film.  It's personal.  To you.
  
  And related to that, don't worry about missing anything.  There's a lot happening on stage.  You can't see it all.  Your eye will be drawn to some things and not others.  That's OK.  That's part of how you create your meaning.  That's part of performance.
• On stage.  You don't have to have a long background in dance to appreciate what's happening on stage.  You can enjoy the shapes, lines, turns, jumps, lifts, emotion, light, colour ... whatever ... without having to name it or know, technically, how it was composed.

• The performers with and without disabilities are expecting you to look at them.  It's not staring, if you watch carefully.  But don't try and figure out who is or isn't disabled and what their disabilities are.  This is not a medical show; it's an art performance.

• All the performers, disabled and non, retain their personhood, no matter what equipment they use or don't use.  Wheelchair users don't become chairs; non-disabled dancers aren't just bodies.  But don't assume that the work is about the dancers and their lives and bodies, unless it is explicitly framed as such.  The work is just that work.  A certain amount of effort has gone into creating a thing for you to see -- it's not a reflection of reality.  Nor is it a projection of your fears and expectations.
  
• Speaking of your fears and expectations.  Leave them at the door as best you can.  That's a good way to see *any* work of art, but it is especially important when seeing work that includes disabled artists.  There is so much societal prejudice around disability that leaving that behind will open you up to a new understanding of the world.
  
• It is absolutely your right to like or not to like what you see.  I hope you will like it for reasons more powerful than your belief that those poor disabled people are inspiring and that it is so nice that those other dancers help them.  I hope you will dislike it because the choreography, staging, presentation or whatever did not appeal to you.  And I hope you will have the opportunity to express both your likes and dislikes to the performers.  We welcome feedback that engages with our work.  We don't need to hear your commentary on our bodies, etc.  Questions about our personal lives ...  assumptions, etc.
  
• Physically integrated dance is a powerful form of contemporary dance.  Let us do our job: we will take you on a journey to new and unexpected places.

Staying Engaged

Not only do I not understand her, I no longer have any idea about how to see where she starts her world.

Part of the gap comes from differences of perspective. We disagree about money, duty, race, gender, sexuality, class, expectations and obligations, disability, religion, politics, education, wellness, family and just about anything else you could name. I do not see how she can hold any of the positions she holds either per se or in tandem with each other. We appear not to value any of the same things in the same way, and while there are several people in my life about whom I could say the same thing, our differences here are divisive; there's no crossing these gaps.

So instead of looking at everything she's doing wrong and everything that I dislike about her, I'm going to look at me and what I've contributed to the mess.  I have chosen, inconsistently, to do a mix of things that both in and of themselves simultaneously exacerbate and improve the situation. And then there's when and how I choose to deploy them.

Let's take the question of education -- because we fight about that one a lot.  We get tied up if we start arguing who has more of it and at what cost -- financially and personally.  Trying to be right is a pointless endeavour.  We might be better off trying address the things that lurk behind the question of college degrees: obligation and responsibility. 

Factually speaking, nothing I learned at college is of practicable use to anyone. Sharing what I learned or even what I was doing was always more alienating and distancing, so I learned that the facts of my subject knowledge never were the coin-in-trade. But being in a college environment exposed me to stuff I didn't know people knew. About how to be in the world. About how the world works. About voting, politics, credit, money, life-planning, self-presentation ... Decision-making.

I was shocked to find these were things people made choices about -- job offer? take it or leave it.  The complexities of the dress codes -- I knew there were codes; I just didn't understand them so fully.  Career, as opposed to work? Buy a house? Save? How? Budget?  I had no idea.  And where I came from, people didn't ever talk about it.  You either knew (mysteriously), and life worked out all right.  Or you tried hard, and life went wrong anyway.  Or some things worked without trying; some things failed despite trying.

It was that uncertainty that got to me.  The not knowing why and not knowing how or if.

College didn't teach me those facts, but it did -- or at least the people I encountered -- did show me that I might need to know stuff like this.  I learned how to access this knowledge and how to interpret it.  And that is the biggest difference between our notions of education.  It's not the weight of the facts that I learned.  It's the stuff I learned from realizing that other people had choices and options that I wasn't even aware of.  It's the stuff I learned from copying people.  From imitating those who looked successful.

So, I don't talk about my education; I share what I know of life-skills.  Having them has changed my life; I am less scared about the world.  I no longer believe that the rug will be pulled from underneath me at any moment.  And when the forces of evil yank on my rug, I have the skills and the support to fight back successfully.  How to share is the challenge. The best way would be to do it, little by little. By being with. By talking a little as things came up. By modeling and talking about what I do. By being human with each other.  But that would require contact.  And trust.

And that we don't have.

Architecting Your Space As An Act Of Love

Love your body!   This post is, I hope, part of the 2011 Love Your Body Day Blog Carnival

Love your body.  For a moment, though, I want to disagree with the terms of the request/engagement.  To me, the question is not so much how can I love my particular body -- though, of course, I have work to do here -- but what can I do in the world such that I am not under the kinds of pressure that make calls to love my body so necessary.

In other words, I want to push back on the weighty work of always having to do self-care.  Self-love.  I do need to look down and love my physicality.  I do need to figure out a way to love my body.

I am angry though.  The call to love my body has awakened in me a deep slow anger.  I am so tired of the work that we have to do to love our bodies and ourselves.  It is necessary work; it is unending work.  But today, I question why we have to do it.  Why is it that I/we have to do the work?  And do we have to do it alone?

I don't want to write another post about loving the difference that is my body.  I don't want to write another post about disability as physical variation and as such a neutral part of humanity.  I don't want to write another post about the joys of impairment and the pleasures of disabled physicality, sexuality and life.  Granted, there aren't yet enough of these posts.  Please.  Write and read them wherever you can.  Today, however, I cannot put these words on my screen.  I am exhausted by this kind of project of self work.

We.  Are.  Here.  Still.  Again.  Trying to figure out how to love our bodies.  How to resist what the world does to us.  How can we love ourselves?  So this time, I want to think differently about how we love.

Public culture and public space are often so difficult for people with disabilities.  On some days, just leaving the house can expose us to hostile stares, stupid comments, inaccessible architecture, inaccessible public transport.... I don't have to go on.  On days like these, it can seem that self love is in tension with the world.  You can do the work at home, with your friends, by yourself.  You can look deep into yourself and gently draw out the threads of your personhood.  You can softly tie them, weave them, knit them.  You can tangle up your of strands humanity into a compassionate, open loving human being.  You can do the work.  You have to.  I have to.  We have to.

And that might be the most important part of loving your body.  We have to.  We.  I/We/You have to find, create engage community.  Perhaps that's just one person, perhaps it's even ten.  No matter what the number, I'm beginning to think that love is not a lonely act.  It is to be shared.  In public and private.  Perhaps your community are your friends.  Perhaps not.  But loving your body is learned, nurtured, and developed in the trust and love of community.

If you go out on the street, go in community.  And that doesn't mean you have to go with someone in person.  You can go with the sense of your community radiating from your mind.  Lean into the wind with your community behind, beside and ahead of you.  From there, shape the space.  Your space.   You probably can't change the accessibility of the world; you alone might be able to change an individual's mind, but there are a hell of a lot of individuals out there.  It's a daunting job.  Trying to do that leads to burnout.

You in community can create a little bubble of open, loving and loved safety.  You won't have to figure out how to love your body alone.  You will.  You are loved.

Transition Time

There's a moment in every creative process where the thing is "done enough."  The choreographer steps away and hands the piece over to the dancers.  It will be our job, from that moment on, to take care of the work -- to develop, nurture and explore its revelations.

This is a huge responsibility.

The piece is not finished; it's just that the formal creative process has come to an end.  The choreographer may make tweaks later -- months, sometimes a year later.  The rehearsal director will help us stay tight and focused with all of the detail.  We will perform and rehearse the piece many, many times.  It's ours now.

As a work transitions from creation and rehearsal to performance, it undergoes a significant transformation.  In our case, we roll down the elevator from the studio into the theater.  We feel the difference immediately.  Somehow, the air is different; the atmosphere more formal, more serious, more ... hushed.  We fill the space up with our laughter and shouts; we dump our stuff on the front row, wheel over the little mats with the wheelchair accessible symbol on them and leap onto the stage marley.  As we warm up, lights go on and off; people run around with mics and clipboards.  There's a good deal of organizing and then everyone is ready.  We are for the first time about to experience the lighting design.

During tech week, we will go over the piece again and again.  The scrim will be installed; the lights set and focused.  The stage crew will figure out what needs to go where, when, and who will move it.  The sound volumes will be set and the light and sound cues written.  Everyone will practise running it.  Sometimes, we will go full out; sometimes, we will do a cue-to-cue.

We will set our stuff up backstage -- figure out who changes where, where the lights will be, the heater (it's really cold in this particular theater).  We will reacquaint ourselves with the floor -- this one has some unusual rolling spots -- and we will practice taking account of the floor.  We will space -- again and again -- until we know by muscle memory how much force it takes, how many pushes, where people will be in order to not crash into each other, keep the sightlines and maximize the movement.

And despite all this rehearsing, we won't know how things actually will be until we've done the piece.  Until an audience has seen it.  Until *we've* seen, heard, and felt an audience as we perform it.  (Yes, we can tell when you are utterly focused and when you are bored/distracted/not with us.)  I won't know how I feel about this piece until the first run is over, and I've had a couple of days to live with what happened.

It's a huge responsibility to take this thing and to offer it to you.