Wheelchair Dancer

The Morning After

2009-11-07T12:23:00.000-08:00

It's actually worse than a one night stand; however you feel about it, you have to get up and do it again - same people, same place, same time. Do over. Yes, a case of the post-performance jitters.

How'd it go? I dunno. No, really, I do not know. And truthfully, it doesn't matter; my attention can only be on the next performance and on my body. I should only focus on fulfilling the next performance. On stretching, moving, warming up. On figuring out if the pain is anything more than usual disability stuff. On discovering whether the ache is only soreness from the energy of a hard week and a hard performance or whether I might have a minimal strain. Last night, I was so zonked, I drifted off (a number of times) in the bath while waiting for my muscles to relax. I crawled into bed and put my heating pad on and awoke a couple of hours later to put my ice cuffs on. This morning, finally, I feel less drained.

In an earlier post on physically integrated dance, I wrote (many of you have seen this before, but stick with me for a sec: it really seems to be coming into its own):

PID is about the ways a dancer moves in his or her body and also about what I see as the positive effect it can have on the audience. It seems kind of cheap to say that I am looking for an integratedness as the effect of PID, but that is what stands out to me.

Too often, I think, you go to a dance performance and see bodies on the extreme doing extreme things. They can be very beautiful and very effective, but the usual dancer body tends to be if not alienating at least in a different world. You can marvel at it, enjoy it, be moved by it, but not necessarily own it in your own body. If you are not a dancer, you know that you could *never* do that.

I think the effects of the representations of the body we see in PID are very different. The movement that, for me, defines the genre communicates a certain awareness and acceptance of the body. I think it communicates a deep engagement with embodiment. By which I mean, an understanding of the reality of the body -- something I think that disabled dancers can really bring to the field. I also mean an engagement with the idea that we know, perceive, and learn through our bodies.

Not sure whether that's clear. For me, a successful PID performance has me admiring the aesthetics, yes. It has me appreciating the social value of dancing PWDs, yes. But it also brings about within me a deep sense of recognition of the power and potential of the body. It's an embracing of the body -- any body -- the fleshly body as a beautiful thing in itself.

This morning on the phone, a friend told me that as she left the theater she saw a bunch of people outside on the sidewalk and in the marquis area. She immediately recognized them as dancers: they were repeating some of what they had seen on stage in the performance. She saw them jumping, twisting, kicking and then talking with each other -- a quick conference and another one would leap into the air. When dancers want to dance what they've just seen ...

My friend also wanted to leave me with the image of a disabled member of the audience, also moving gently in her chair as she talked about the power and effect of the performance on her. When non dancers want to become dancers ....

I feel really emotional about all of this. Something is happening that I have yet to understand.

Pre Performance Jitters

2009-11-06T13:11:00.000-08:00

Big new works. Repeat of big works from last year.

Nerves.

Unbelievable emo day -- of the Grey's Anatomy kind. Of the wanting, but not having wild uncontrolled sex (Wizard is at work; don't want to get injured). Of the everything is a signal, a sign. Dance wheels on the street is it good or bad luck? Inflate the tyres? What if I overinflate and they go bang. Can't not inflate because everything won't be perfect. I need to be perfect. My body needs to be perfect. I refuse to indulge in the usual pre-performance rituals, but I also have to. It's not that shaving, eyebrow plucking, hair conditioning, makeup brush cleaning add anything to the actual dance, it's that they add to the readiness: the humbling and opening of self before the ineffable of performance.

Will I be there? Will I get it right? Will I execute? Will I be able to live in the full potential of every dance moment? Will I feel the pulse of every movement and live through every breath? hell, will I actually remember to breathe? Will my chair be OK? Last year, the footplate slipped out of the leg tube that holds it -- right in the middle of a piece. We were banging it in with a mallet in the wings. I was just losing it.

Last night, my pants split at the crotch -- OK. Dress rehearsal. But what if it happens again? What if at the moment when he lifts and splits my leg, the light catches a gaping hole (part of me is terrified and part of me just wants to laugh). Last night, I fell. I whipped around too fast, felt the wheel rise; I balanced for a second or two with my body and arms extended parallel to the ground, the wheel rising and, well, then I didn't balance any more.

Last night gives me hope for today. Nerves. Excitement. Passion. Raw. Vulnerable performance.

Who Are You? Do We Know Each Other?

2009-11-03T14:54:00.001-08:00

I sat in my chair this morning and greeted it (silently), looking for our usual familiarity. But it was just going to be one of *those* days: the days where your chair, no matter how long you've had it, is simply alien. Yesterday, we floated over the sidewalk, zoomed through the world. Today, the chair is heavy, with no grace, no sense of integration coming back at me. Yesterday, the wheels slipped into my hands as if my hands had always had wheels. Today, my hands groped around slipping off the wheel, grasping for grip. Yesterday, there was responsiveness; today, there is weight. And so on.

What happened? These things happen every couple of months or so. The sensation usually wears off by the end of the day. But I always wonder whether or not that feeling of alienation heralds a change in my body -- did something get worse overnight? Better? Am I stronger? Weaker? Rested?

When change occurs, I usually worry about my body and my future, but I am beginning to wonder whether I shouldn't begin to worry also about my chair. Clearly, sometimes, a lack of responsiveness can be due to, say, flat-ish tyres or to, say, the kinds of things that get taken care of (or are supposed to be taken care of) invisibly in that tune-up no one every schedules. On top of that, I do with my chair things that designers don't usually think of as being regular parts of a chair's life. On stage and in photos/video, it all looks nice, but you can't see the effects of torque, speed, and other kinds of junk. All chairs have weak points, and dance -- just as it does a fleshly body -- discovers and rides right on through them.

I enjoy the implications of these fears: that my chair is alive, a body as vulnerable to change as my first body. We will have to settle on some things together and work together. I might be the wheelchair user, but it is becoming permanently apparent that my chair is not a secondary partner in our daily life.

Halloween On Wheels

2009-10-31T14:41:00.000-07:00

We're going to our first Halloween party tonight since I started on the disability roller coaster.

We've been to other gatherings, yes, but this is our first Halloween party. Wheelie Catholic writing as Rampracer on Twitter has been posting wheelchair friendly Halloween costumes -- yay! They are more involved and clever than anything I could possibly do: At the moment, I am self-consciously reprising my 80's look -- short skirt, black tights, heavy studded boots. That should be enough costume for anyone, smile. But I am going to make an effort to find a wheelworthy 80's popstar costume (without being MJ).

It seems slightly wild and bubbly-making to be thinking about partying (a little). Karaoke (OMG, yes)?? Costumes?? Yes. I've been wondering though about disability specific -- OK, wheelchair specific costume. I mean, where is the disability/wheelchair culture that would enable us (cuz it would have to be one of us -- don't want to repeat the disability equivalent of blackface) to joke about ourselves in a Halloweeny kind of way.

Dreams aloud for a second. Well, the costume would have to embody both chair and user. I can certainly see wheel wings, but what would the scary, exaggerated, ironic wheel thing be? A flat just isn't funny. I often refer to my wheels as my ass -- could something be made out of that. Envisions wheels and buttcheeks together. Shakes head. Tries to wipe mind tv. Wheels with spikes, studs, water pistols --OK. Done before. But perhaps a starting point. How to ironize wheels?

Then, there's the whole disabled person thing. Is it possible to dress up as an able-bodied person's projection of a disabled person? Takes a deep breath. What physical presentations of disability could people find most difficult to deal with? Drool? Leg bag? Scars? Body shapes and movement? Perhaps a more positive crip culture way to think about it. How could I ironize myself? Thinks about characteristic and idiosyncratic spazzes. Who would find that funny (other than people who know me intimately?)

The thing about disability is that people are not yet aware of the way prejudices work. Every year, someone does something offensive with a Nazi/blackface/other ethnic or religious identity costume, and everyone else in the world knows enough to call them out. This is plainly wrong; we as a society don't behave that way. But with regard to disability and disability culture, I am not sure anyone knows enough to see the humour or the offensiveness. The best discussion I have seen (depending on who you are) is an article Lawrence Carter-Long fb'ed: That Character in the Wheelchair? It's You."

The films themselves, too, can be divided into these two camps: those that aim to exploit our vulnerability and haunt us after we’ve left the theater, and those that create a phobic object only in order to defeat it, so that the audience can leave feeling triumphant and relieved.
The subgenre of horror movies involving protagonists in a wheelchair can be similarly split: there are those that make the physically challenged—us, remember—into victims, and those that ultimately empower them. Of the titles that my colleagues and I brainstormed for this piece (thanks to Benjamin Strong, Mark Asch and Matt Zoller Seitz), there’s a roughly even distribution of films between these two categories—enough, ostensibly, to satisfy disability advocates and a certain kind of horror fan alike.

I'm not there this year. And I am not going to the kind of party where any attempt at this project will be understood. Next year. Next year, I am going to have a party where my crip friends can come as Halloween expositions of aspects of disability culture. All y'all are welcome! Wicked cackle.

Two Short Thoughts

2009-10-26T21:51:00.000-07:00

A couple of complete thought vignettes that are too long for Twitter and too short for real blogposts. They would have belonged on Friendfeed (but most of you aren't there and ff got bought by the evil fb). So, a couple of thoughts that I want on the internet record.

I think of us as a small secret group, those of us whose lives disability has touched. One by one, I see us connect on this topic, each with a story to tell. At our closest times, some of us were not particularly friendly; we were on opposite sides of important institutional, organizational, political arguments. We were split up by "generational divides" (generations here being 2 or 3 years). We dated, broke up, sided with the other person, dated other people. We lived together, abroad, on opposite sides of the country, a block or two away; our geographic distribution remains much the same. We cluster in groups of two or three, our configurations determined by other factors and interests. The rest of the members probably don't know I am watching, don't think of us as a group of people who could be allies -- far too many of them experience disability alone. Nonetheless, we are there: a small secret group of people whose lives disability has touched.

I went to a panel talk on disability and relationships the other day. I was a little worried, given that disability was advertised as the "elephant in the room." (sigh). But the panelists were all disabled and were pretty cool. There was a big divide in the audience members, though. The first group did not necessarily identify as disabled in the cultural political way; their disabilities were collections of impairments -- problems, illnesses and conditions to be overcome. The second set of peeps were my peeps -- those who identify as disabled in a political and cultural way, those who found positive joy in the quirks and idiosyncracies of their disabilities.

I Don't Think Of You As Black, Disabled, ....

2009-10-20T21:41:00.000-07:00

For a while now, I've been trying to figure out what people mean when they say, "I don't think of you as black/disabled.... You're just ...., my friend."

I mean, seriously. That's so naive and so painful. You are my friend. Come ON. I mean, I didn't whiten up or lose the wheels. And it isn't like other people don't notice my differences, either.... They exist. We both know they exist. When we go out together you notice that I am treated differently from you; we both guess that race is the likely factor; it makes no sense to say that. What on earth are you saying? When we go out together and we've spent the past hour or so trying to deal with access questions -- to your house, to the store, to the restaurant. What are you saying? And what the hell do you mean?

The best I can figure is that you are trying not to say something like, "In my eyes, your difference is not a barrier to our continued friendship." Or perhaps it's, "You don't seem to have the usual pathologies of people with your condition, race, etc. We can continue to be friends." Or perhaps it's, "I'm big enough to handle whatever problems your difference brings." But it could also be, "I don't think in terms of these categories; it is a point of pride with me that I am not racist/ableist..." Hopefully, it is a miscommunication for, "We aren't the same, and I like you just as you are."

But if it is that latter communication, what is wrong with just saying that? Why be so afraid to acknowledge difference in a positive way? Why do these comments always only come up when something disability or race bad has happened? I don't find it comforting to hear this, you know?

Well, actually, you don't. Cuz otherwise, you might think twice before saying that. When you say that, I feel that you are constantly erasing the very things that make me "me." I will never be you. But, please, allow me to be me. And if you need to erase the differences between us, I find that something of a problem. I like our differences. I like what makes you different; I learn from that. Must my difference always be threatening to you (and those around us)?

I think of myself as black and disabled. When you say those things, I know you mean well. But I am those things. And to me, they are positive. If you don't think of me as black and or disabled, who do you think I am?

In situations when things go bad, I need you stand up and protect that difference. When I tell you my stories of how things go down, I need you to see it from my point of view. Disability and race matter. We both know they do. So, let's not try and whitewash the facts.

Disability At Work

2009-10-18T21:26:00.000-07:00

You know that disability is an important factor in your work environment when:

The time scheduled for bathroom breaks on tour includes time for chair assembly, transferring, rolling, needing more than 5 seconds to do whatever it is you do, rolling, transferring, and chair disassembly.
You arrive at the airport with your co-workers and everyone rushes to help you.
TSA remembers you.
People understand why having to use the freight elevator in your building is wrong.
When, in addition to the usual computers, printers, phones, etc., the office is littered with wheels, tire pumps, tool kits, pairs of prosthetic legs, and sequinned crutches.
Spasticity is a regular part of daily conversation.
People uninhibitedly talk about rolling, pushing, walking, or whatever.
In an emergency, you can sometimes borrow one of whatever you need from a co-worker.
No one freaks out when you tip your chair over.
A work dinner in a restaurant feels like the gimps have conquered the world.

Sins Invalid IV: Possibly NSFW

2009-10-15T19:06:00.000-07:00

Sins Invalid is a force to be reckoned with. Make no mistake about that. I've been to 3 of the 4 shows, some of them more than once. I can tell you: Sins is a force to be reckoned with.

Sins describes itself as a "performance project on disability and sexuality that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized from social discourse." Umm. YaY. And this year, things were a little different. From the 2009 Press Release (with edits by me):

This year, SINS celebrates the experience of sexuality in a "nonnormative" body. .... "[T]he theme of this year's show is the magic of embodiment, to reflect the magic of all life and the spirit incarnate as a human being. Nonnormative bodies reflect that in a particular way, though all people are magical." (Patty Berne) To reinforce the idea of magical possibilities, the artists of SINS INVALID possess disabilities that range from apparent physical disabilities, to disabilities that aren't immediately apparent, such as deafness, environmental illness and injuries. Each of these artists is in nonnormative bodies, and each is a miraculous, sexual being."

Sins delivers.

I saw some truly incredible performances. Both times I was there, Antoine Hunter's dancing in Risk and Matt Fraser's piece, Beautiful Freak, rocked my world. On second viewing, Nomy Lamm (The Reckoning) and Leah Lakshmi Piepzna-Samarasinha's Dirty River Girl moved from solid to totally cookin': sometimes, the actual performance of a given day can make all the difference to the reception and value of the work in the eye of the beholder. I also saw some things that I didn't like, some things that were poorly designed, poorly performed, and some things that just felt underdeveloped.

The first time I ever saw a Sins show, I wept because these were my people doing their thing. This time, however, I feel that I have reached a point with Sins (and/or perhaps that Sins has reached that point -- it's an important distinction) where attending to the questions that arise from the project -- its format, content, and vision -- are now absolutely critical.

For the most part, this year's Sins show was full (again) of hot performers telling it like it is. Disabled, sexy, hot. Doing it. Cummin. Doing it again. Loving. Fucking. Wheelchairs are Freedom. Living. Despite all expectations. Here. Loud. Proud. And not going away. (Hoorayyy!) Spoken word artists (and Lamm who was singing) told their stories: rejection, pain, disbelief, frustration, and yet sexy. Major exceptions to these grossly overgeneralized characterizations were Hunter, Fraser, and Quest and Moore -- I'll come back to that bit later. In all of this "first wave-y" disability sexuality pride stuff, two big things stand out.

One: the format of most artists performing two different pieces, albeit with similar messages, was simultaneously scattershot and repetitive (if you see what I mean). Spoken word artists often perform alone -- it's partly the nature of their material -- but what would happen if there were a unifying theme or if the artists performed together in pieces they had constructed together? If you wish to reclaim the structure of the freak show, that's a good thing. But unintentional reproductions of that structure without explicit discussion of why or how tend to remain just that: unintentional reproductions. Two: Even though the material performed comes both from the individual experiences of the performers and from some representative experiences of people in our communities, I feel that it is important to ask: To whom is this directed? Whose story? Whose expectations? What world is this? Whose needs is this show fulfilling? Whose minds is it expanding?

To get at these questions, I want to impose a perhaps artificial distinction between disabled sexuality and crip sexuality. I may come back to that in a separate post, but, for the moment, it is just a division that allows me to get at some important ideas; it is not a philosophical position to which I am committed.

By disabled sexuality, I mean articulations -- declarations -- of sexuality by disabled people directed, for the most part, at non-disabled people. "I'm here. I'm disabled. And I do it. Yes, I do. Even in this body that you cannot imagine anyone fucking and loving." That kind of thing. It's an important thing, this disabled sexuality. It is critical that we speak our truths to those who cannot imagine them. And for a variety of people at a variety of stages in their disability journey, it is an important message to hear. This is what brought me figuratively to my knees in that first show. The joy of hearing others celebrate their freedoms and their bodies lifted me up. So, don't get me wrong. I'm not dissing it.

At the same time, however, I want to insist that there be more. *Is* more. Why? Well, partly because I know that there is. And partly because celebrating our identities and ourselves is not enough. What is a celebration? Can you celebrate without merely reiterating and repeating? How many times in a show filled with a sympathetic audience (At times, I felt that the applause was a welcoming of the performer -- "Oh, Y! Y's sooo awesome!" -- rather than a response to the work) can you restate your very vibrancy without fierce resistance refiguring itself as routine? If you are preaching to your type of crowd, is defiance the strongest form of celebration? You need to resist; hell, we need to hear and see that resistance. But ultimately, there's got to be growth. A production with the prominence of Sins must grow.

For Sins, I imagine that growth will be both structural, thematic, and conceptual. Structural: As it includes a greater diversity of performers in a wider range of performance disciplines; the preponderance of spoken word leaves me feeling that the show, overall, is somewhat unbalanced. Instead of awarding the performers what looked like two slots or, perhaps, a finite number of minutes (I can't tell what the governing structure was precisely), I'd like to see more developed, sustained pieces. Pieces that bring together the performers as individuals and as smaller groups. After all, isn't it the dominant world view that we celebrate our sexualities alone, by ourselves? The revue format unintentionally recreates the philosophy the show is designed to reject.

Thematic: In allowing more of a "company" feel, it might be possible to display a more substantial piece that deals with a weighty issue. This year, the topics of institutionalized sexuality, medical abuse, trauma, racial violence, sexual violence, disability, and s&m were dealt with in a single scene that was performed by Quest and Moore. Given all that was going on here, there was no way that this could have been anything other than a complex piece of writing and performance. It didn't work for me. It didn't work because it was underdeveloped and tackled too much in too short a time without seeming to have settled on its artistic goals and tones. Too much, too soon, too hard, too light, too little, and yet too heavy -- and therefore, again, too much. The piece ran the risk of reenacting-- and, I think, for too many audience members actually did trigger -- the shared histories of trauma and abuse that all too many members of our communities know. I'm not saying that any of these topics and aspects of our sexualities should be proscribed; I am saying that the cabaret/revue format is not yet capacious enough to hold such work.

Conceptual: Here's where I get back to that thing about crip sex. As I see it, crip sexuality is something different from disabled sexuality. Crip sexuality is about what disabled people know and what we do. It speaks to us and our partners (disabled and non) about the ways disability interacts with sexuality. It is more than a statement of having sexuality. Crip sexuality lays bare the mechanics, the logistics, the joys, and the pleasures. Crip sexuality might reveal the joys (or not) of a third person, an attendant, who isn't a lover or perhaps is. Crip sexuality might discuss the things we do to get it on, off, or in and out. Crip sexuality might address touch.

It is not enough to say that my vagina needs to be loved -- sure does. I wanna know what happens when you part my lips and my legs spazz my hip into some unbelievable place. What happens when I kick you .... wherever I kick you this time. I want to know what happens when you won't fucking cum, when you are holding it and I'm eating you. I'm on my hands, risking my shoulders; my neck hurts; I can't get my mouth open wide enough any more ... my pain vs. your pleasure, but the cost for me for the rest of the day? I want to hear what other people do with pain. I want to see an s&m scene that talks about disability pain and sexual pain. This, for me, is crip sexuality.

Perhaps the distinction is functional only for this discussion. But perhaps the division is also technical. I'm not committed. The question is how we get art from all of this.

And that might be my last point. How are the personal and the abstract/conceptual (I see these as necessary layers of art) connected? When Fraser washes his arse with his foot, he does so in such a way that my eye sees movement, dance, and functionality. I am aware that a possible response is technicality -- OMG!! how does he do that? -- but Mat is a consummate artist and performer. There's abstraction in this most quotidian action. It's not purely functional. I mean, this might be the way that Mat washes. It could be. But I don't know that. And I don't know that because even as I see his heel appear between his cheeks, Mat works the conceptual, the purity of the movement. And it is simply fucking gorgeous.

Antoine Hunter has similar skills. He doesn't let you linger in the factual world of "this guy is dancing to some music that you just picked that *he* can't hear." He moves you beyond questions of technicalities: If he can't hear, how does he know when to ..... And then when Antoine comes out a second time and repeats essentially the same dance to what he theatrically offers as his own music -- silence -- (I don't know his degree of impairment), I see an artist working concepts and ideas. Abstraction and artistry are present here; they move me beyond questions of how much Antoine does or doesn't hear to questions of what is music anyway? How are sound and dance related or not? It's a bigger picture. And the kind of picture I think Sins should be painting.

Back, for a second, to the moments in Press Release that describe the Sins performers as having magical, miraculous bodies. In some ways, these words are key to understanding my difficulties with Sins. Magical bodies belong to the ethereal otherworld of exotics, freaks, and unreals. Miraculous bodies (only of some proportion human, if any) are inspirational and scary. Embodiment is not, in my world at least, magical or miraculous; it is real: stinky, sweaty, and real. That's the political message I would like to send. It's no fun if everyone cums with a single wave of the magic wand; I prefer the sweaty, grunty, wormy, windy, hilarious, painful moments in between. These are moments I want to see.

x-posted at sexgenderbody

Becoming Disabled On the Job

2009-10-10T22:13:00.000-07:00

In the months after I was hired at my first adult job -- the thing I had studied for, for over ten years -- my immediate supervisor informed me from behind his desk that they had hired a thoroughbred. I looked down at my mixed race hands. Oblivious, he continued, "We just have to see if you can run." At the very beginning of my second year on the job, my disablement process started. "I see that our thoroughbred has gone lame." In my third year on the job, when my legs were an utter mess and I was stumbling around on two canes, I sat in his office away from the desk on a comfy chair. I felt like this was no longer a professional talking to; I was a visitor on the soft chair. We were both silent for a while, reflecting (so I like to think) on the wreck that I had become.

I relate these moments because as a disabled woman of colour in an albeit pretty sheltered workplace, these were my worst encounters with the "system." When things started going wrong, my supervisor went to bat for me with higher ups. He provided accommodations -- a new computer, voice recognition software, and, most importantly, time. Time. Time. Ultimately, I was successful at my job; I wrote my heart out, presented, won awards, grants, and funding; I got myself published. Technically, however, I didn't get my work done on schedule; in fact, it took me approximately two extra years to approximate a body of work like the ones that my peers had on their resumes. I felt like that broken and imposter racehorse, uselessly gimping around behind its pure blood, beautiful, swift sisters. But my feelings didn't derive from my work climate; they were entirely about my insecurity and inadequacy. My boss stood (ha!) behind me and up for me.

I went on two job interviews while I was still employed there. For the first, I pretended I wasn't all that bad; I was afraid they wouldn't hire me. I left my wheelchair in the car and limped around with a cane until the point where I was literally begging for the day to stop so that I could go back to my car and get my chair. I asked my guide to please take the disabled parking; he ignored me. I asked him to go back to my car so I could get my chair -- "Just one more appointment," he cajoled. I got this job, but I didn't take it. It wasn't a disability thing; the job wasn't for me personally.

The second time. Oh well. The second time. I rolled into the interview room, knowing that one of my interviewers was also disabled. It was the first (and last) time I was ever to meet anyone with a visible disability in my particular sub-discipline. I rolled in. I don't think the other six people in the room knew I was a chair user; they stared. I stared at the chair user interviewer. The whole situation freaked me out. I couldn't stop staring. Another person? A wheelchair? I want to know your story? How do you do it? What's up with you? Can we both work on this topic and be disabled and write? Will we be in direct competition? Will you support me?

I scrambled the interview. I didn't get the job. Deservedly. It wasn't a disability thing. (Though part of me wonders what it would have been like. How many disabled people can you have in one small department? If you have one, is it enough? Are two too many?) Anyway, I was disappointed, but as life turned out, it wouldn't have worked for me.

I said that the atmosphere at my first job was fine; the physical environment was another issue. I remember how difficult it was to get access to the employee shuttle; access wasn't in my particular benefits package and it wasn't wheelchair accessible, anyway. Dumpsters in disabled parking. Snow and ice weren't cleared from disabled spots and zero-grade entries. I had to negotiate with facilities for them to clear where I was scheduled to be -- the walking entrances were always fine. Even without the snow, the accessible entrances could be locked/blocked/couldn't I ask for the key to the elevator when I needed it?

It wasn't just my workplace; professional conferences were inaccessible; lunches out, drinks, meals -- inaccessible. I felt like I didn't belong. That said, I didn't help myself; I made it difficult for people to talk to me. Generally, I was a moody, angry, frustrated person. I did not know what was happening to me; I could not understand how I had gone from being a person with an occasional bad back to being a mess whose mother-in-law was caring for her. I remember wrote a scathing memo at someone more vulnerable than I was denouncing her use of the word, "lame" on an internal publication. I remember feeling so vulnerable, exposed, and alone.

I think my condition embarrassed people. I spilled coffee from the lunch cart all down myself one day. It turns out you can't carry papers, food, coffee, and two canes at once. After that, coffee appeared in my office. My first wheelchair ride down the internal hallway ramp (built just in time for me) resulted in me crashing into the wall; it was 9:30pm and people still saw it happen. Coffee continued to appear in my office. People checked with me about picnics and parties -- there's a couple of stairs... there's grass ... can I help you? And despite the best will in the world, people still didn't get it.

I struggled. I fought for grace, but found only grouchiness and rudeness. I was anything but long-suffering and silent. Even so, I fell off the fast track, faster than anyone could have imagined. I was our ongoing spectacle. A drama better than any other office politics or gossip, kind of like an accident no one really wanted to see, but they couldn't pass me by without looking. Wrist braces, canes, crutches, wheelchair, crutches, canes, wheelchair, wheelchair, braces, .... Eventually, I resigned. I was under no pressure to do so; I had just achieved promotion. But I think they were glad to see me go.

I know that I felt a big burden lift. I would have been living alone on a different coast from the Wizard, struggling to cope with what was happening. Now, several years later, I believe I could do that job; I've met people from my former life -- I've even built a support network of colleagues in a field that I no longer work in. I think I could still be the high-flyer they hired: I would revel in the irony that the disabled racehorse was one of the most successful. I think I would know how to advocate for myself, I think I know how I could pace myself in that environment. I think I could do it. But back then, however, I had no clue.

My current employment as a disabled dancer is a very different thing. It should probably be a different post.

Inspiration

2009-10-08T19:37:00.000-07:00

In my line of work, I hear the "inspiration" word a lot. And I've been pretty harsh about the way it is used around disabled people (here, here, here and here, for example). So, I was pretty surprised to find myself pondering a new (to me, at least) aspect of this nasty little word.

Usually, the inspirational assault occurs after a performance (when I feel most vulnerable and most exposed); it's from an audience member. To be sure, some of them are doing the tears running down their faces, "it's so inspiring; YOU're so inspiring" stuff (yawwwnnnnn). But I have also learned to hear in this insistent inspirational language a different need being articulated.

For some people, inspiration language seems to be a way of asking for an accounting. That I hear it being asked of all kinds of artists in so many different places -- radio interviews, newspaper interviews, painters, poets, writers -- means that I, albeit consciously, have learned to separate my bitter little reflexes out from the larger picture. Of course, it is different. Of course, there's always that disability thing underneath (when they direct it to us, the disabled dancers -- more on that later), but there's also a desire for a kind of accounting, some kind of explanation. For some interpretation that brings the art back within the speaker's purview.

Here's what I mean. When West Coast performs, it is out of this world. Dance -- all good dance -- can be like that. Art can move you from your seat into an inexplicit nowhere, a place where all things seem possible, a place where, for the minutes of a performance, your perspective shifts to somewhere where the ground you knew is no longer as firm or enduring. When the lights go out for the last time and the stamping and cheering is over, the dancers and any choreographers present are brought on stage. It's Q and A time: this is the audience's chance to get up close and personal with what they've seen. And believe me, people do want to get up close and personal. This is their chance to touch the ephemeral, to have it explained, to stabilize the intangible, and to make it theirs.

In my mind, questions about meaning are replaced (at least by the quasi-sophisticated audience members) with questions about inspiration. It is as if knowing the origins, the motivations, the thinkings will help the speakers orient themselves towards meaning. It will help the speakers understand something that bowled them over. Seeking to understand inspiration is a way of taming art.

So, when choreographers are asked what inspired them, they have a choice. They can go for talking about the work and about how they do it -- many choreographers are not terribly good at this btw and, vice versa, those that are aren't always the best choreographers. But they can also choose whether to answer what to me is an ever present subtext: how did you come to make that beautiful thing out of those bodies?

Most of our choreographers have understood the pointedness of these and other such questions, and they have answered in a variety of ways. Mostly, though, they stress how much opportunity and potential we have; they talk about the learning curve they have experienced -- the challenges, difficulties, and rewards. Our choreographers make good work. Some of that "goodness" comes from our unique physicalities as both disabled and non-disabled dancers; some of it is from their original approaches to movement.

Sadly, but perhaps accurately, I am not often in a place where I can hear anything other than ignorance and triteness (if that is a word) when inspirational language is thrown at our disabled dancers. Literally, of course, how we do much of what we do is a technical question. But somehow, when I am asked and when I give a technical answer, I get the feeling that I sidestepped the question (sidestep? sidepush? can't be side rolled...). The asker seems to need a deeper kind of accounting, one that concerns not so much the work but his/her reckoning with disability and disability assumptions. They need to know how it is possible for disabled people (who don't actually register as "people -people") to do what we do. Mechanics aside, that seems to be the question. Tell me how it is that you people do what you do when I have always believed/known/experienced ....

In the outside world, inspiration is harmless; it seems to be about motivation, about reasoning, and about propelling a person forwards to new actions, ideas, and achievements. Here, however, inspiration is code for stereotypes and prejudice. It is less about moving from one place than the place in which/at which the so-called inspired person is stuck; it is about the things that hold us in place.

Violence, Abuse, Protection

2009-10-08T12:21:00.000-07:00

All over the web, people have been responding to the new Justice Department study that shows PWD are more vulnerable to violence: "The age-adjusted rate of nonfatal violent crimes against persons with disabilities was 1.5 times higher than the rate for those without disabilities (32 per 1,000 persons age 12 or older compared to 21 per 1,000)." These and the other figures are shocking and horrible.

If you live locally to San Francisco, here's one way to help educate yourself and others.

The San Francisco Public Library in Association with the World Institute on Disability presents:

A CAPE of Self-Protection: Abuse and Violence Prevention for People with Disabilities, Their Families and Allies

Thursday, October 15^th, 2009, 6:00 -7:30 p.m.

SF Public Library, Latino/Hispanic Community Meeting Room, Main Library, Lower Level

Join us for a presentation about disability abuse and violence prevention, demonstrating our new educational tools:

Sticks and Stones: Disabled People’s Stories of Abuse, Defiance and Resilience

CAPE: Curriculum on Abuse Prevention and Empowerment

WID Project Director, Marsha Saxton, will present short educational films and facilitate a reading of empowering stories of disabled individuals resisting mistreatment and discrimination, with discussion and refreshments to follow. CAPE and Sticks and Stones will be available for purchase.

Refreshments provided!

All are welcome. For more information, visit www.wid.org/cape

All programs at the Library are free.

Main Library 100 Larkin St. (at Grove) sfpl.org, near Civic Center BART

Sign language interpreted and wheelchair accessible

The Body's Music Is Not A Shattered Life: A Letter to Stephanie Smith

2009-10-05T19:40:00.000-07:00

Yes, I saw that NYT piece about the "shattered life" of dance teacher, Stephanie Smith. One minute, she's a beautiful active 23 year old. One hamburger later, she's disabled, a paralyzed wheelchair user, her life over. Don't get me wrong. That is an awful thing to happen. The unfairness. The criminality of the system and the uselessness of its safety checks. Unspeakable. Immoral. Greed. Anger and disgust understate my reaction to this story.

Her story does not have to be told this way. For anger, see the Bad Cripple -- whose analysis is anything but bad. For biting clarity, see Stephen Kuusisto at Planet of the Blind. For their words, I am grateful, because even though I was able to take apart the Happy Days piece (post before this one), I found myself unable to create a useful response. Now, I know what I can say.

If she ever finds her way here, I want to offer her a meditation on dancing -- dancing in a wheelchair.

Dear Ms. Smith, Stephanie, if I may:

I don't know what you have been going through -- my experiences and body are not yours. I don't know what it was like to be a dancer before becoming disabled. I don't know the loss you have experienced.

I do know what it is like to push onto the marley and dance. I do know what it is like to take ballet and modern. To roll up to the barre, place my hand on the barre, and begin with breathing and plies. I know the rigors of creative movement. I know how it feels to be waiting in the wings, nervous as all hell, to be called to "places." To hear the curtain go up in the darkness, to hear the music, to put my hands to the rims and dance. I know what it feels like to return to the stage, to see the lights go up, and to hear that applause.

The article says you are working as hard as you can to get back as much as you can. As you are doing all that PT and rehab, can I offer you a glimpse of my life as a disabled dancer? The most powerful moment of performance I have ever had was an outdoor gig at a high stakes venue. You'll remember the difficulties and joys of dancing outside: being dazzled by the sun, yet frozen by any wind, the joys of the outdoor stage, the likely absence of wings, the absence of customary lighting, a sound system which both gives and takes the music you are accustomed to hearing. All that set against the freedom of the fresh air and the beauty of the sky and the trees. This performance had all of those aspects and an even scarier moment: an audience of over 900 people.

And boy, could they see us sweat, hear us breathe, sense our effort. They were so close that I could have touched them. So close that there was no hiding. So close that I worried. Outdoor stages don't have ramps, but they built one for us. I pushed up that ramp (trying to keep a neutral face) as my entrance approached. Sound check had been fine, but nothing had prepared me for the density of all those bodies. I barely recognized my cue.

The first couple of seconds of this piece are always a blank for me. This time, when I come to, I see my hand reaching slowly down to the wheel. I watch my fingers flare, feel my partner fly onto my back over the backrest. Thud. She's down. OK. Time to go; we're still on time. I pull back, making sure that the pull runs from my lat down to my finger. I stroke the tire as my fingers leave the wheel and gaze at the gazillions watching. We whirl through a turn, her leg comes up in a deep arabesque; I catch her heel, she retracts her leg, pulling me through. I suppress a giggle; she snorts: we hate the next bit.

The silence grows thicker from out there; the sun sinks slowly. They are with us. It's exhilarating. We couldn't push a wheel wrong -- no, not even if we tried. The balances work; the spacing works. The costume change works (yeah). And then, it's over. The last piece always makes me cry; I can't help it. We return to center stage, reach for each others' hands, and bow. Another one down.

Rehab and dance are not mutually exclusive; there's the work and there's the art. Your body hasn't forgotten. No, indeed, your body has its own music. Do you watch tv? OK. This is a little goofy, but in the most recent season of House (season 6 -- Broken Pt. 2 -- the talent show -- you can watch it on hulu for free -- one of the patients appears on stage in the posture that has been used to characterize his psychiatric state. He makes the to "normals" off gestures that have been used to signify his insufficiency. I'm watching and realize that I hear sound. Each time he slaps his body, there's sound. Then, I realize that the slaps are intentional: out of his disability out of his body is coming music.

Your disabled body is not ugly. It is a beautiful thing. You can dance with it. Manual and/or powerchair. Your body can dance with paralysis, with spastic involuntary movement. Your wheelchair can float, glide, spin, stamp (yes, stamp!!), balance, perch, drag, pull, zoom, and you? You in your chair -- you can be an incredible dancer.

The NYT piece says you live in Minnesota right now. I don't know of any companies or instructors there. I don't know if you are still interested in dancing and teaching. It's a new life and a new body. Don't rush into anything. But if you ever want to dance again and are using your chair, know that there is a dance world out there. And we'd love to have you. If you like ballroom dancing -- there's ballroom dancing -- Wheelchair Dance Sport USA). There are modern dance companies -- AXIS Dance Company, Full Radius come to mind. Ballet: Dancing Wheels and Infinity Dance Theater. All these organizations have clips on youtube.

I don't know what's up for you next. How it's going or anything like that. I don't know if you will even see this. But if you do and if you want to be in touch, my email addy is in my profile.

Good luck!

Sincerely,

Wheelchair Dancer

When Simply Stating Your Truth Isn't Enough

2009-10-03T17:21:00.001-07:00

For better or for worse, we have developed a culture in which personal truths are valued as highly as objective facts -- sometimes even mistaken for objective facts. In some arenas, the value of a personal narrative is particularly high; it's how we learn about diversity, for example. Large sections of the web rely on the cultural importance of personal narrative, personal experience, and personal truths (why else are you here, reading this blog? smile). Personal narratives are sometimes the facts that scholars study, the foundations of new disciplines, and/or the entree points into new worlds. We cannot do without them.

But what do you do when your truth, the truth that has made you whole and set you free, depends on some pretty problematic assumptions? You know what I mean? The kind of assumptions that ordinarily you would avoid, words and ideas you would declare not to be in your vocabulary -- the things that whiff ever so slightly of racism, ableism, patronage. These things that aren't you, surely? These are the things you would never think possible about the conscious you. And yet your story -- your truth -- can deceive you.

Writer Lisa Jones and her book, Broken, are featured in the New York Times as part of the "happy days" series: "Happy Days is a discussion about the search for contentment in its many forms — economic, emotional, physical, spiritual — and the stories of those striving to come to terms with the lives they lead." I'm not sure that the essay printed hereunder exactly meets those terms, but I do know that I have encountered a piece of writing that is deeply problematic.

Here's what you're supposed to get. White journalist Lisa Jones goes for a story: "I wasn’t trying to write an authoritative book about Native Americans or native life. I was there to write a book about Stanford’s evolution from what he had been, a bad-boy outlaw, into the renowned medicine man he had become" (excerpt from Preface). She meets Stanford Addison -- quadriplegic, Native American, male, horse gentler, healer. Ms. Jones leaves with "nothing particularly resolved, but happier than I’d been in years" (NYT). She undergoes a horrifying trauma and draws on Stanford Addison to help her heal. We are supposed to follow her on her journey to healing and celebrate the growing friendship between Mr. Addison and Ms. Jones. The book is a celebration of healing and a return to life. Happy Days, indeed.

But what happens is perhaps less important than how it is narrated. Because it seems to me that this -- the framing of it all -- is the ultimate responsibility of writers, performers and artists. Your truth is your truth. But you -- we -- have the responsibility to place it, frame it and narrate it in such a way that there is no collateral damage.

Unfortunately, Ms. Jones does not succeed. Take, for example, her descriptions of Mr. Addison: "his long black braid, his half-toned, half-atrophied arms, and slack legs" and "this paralyzed, six-toothed, one-lunged Plains Indian" (from Preface). Her NYT piece calls him a "person who persevered — thrived, even — without his needs being even close to met. He had very little money. His body was paralyzed and diabetic, and he was always more or less in pain. Still, he managed to care for all these kids, work his horses, and host a steady stream of visitors from the reservation and beyond." Of Native life, she writes, "Although terrible things happened on the reservation — crime and addiction and violence were never far away — happiness was all over the place on this ragtag ranch" (NYT).

Why is this bad? After all, some of those facts are unquestionably true. Mr. Addison does have a spinal cord injury, etc., etc., etc. But honestly, that portrayal is one that objectifies the external signs of disability. It is not the full story of the person. When will we move beyond the MDA approach to seeing a disabled body? Mr. Addison is Native American -- though the NYT piece repeatedly calls him Indian. "Indian" is not a bad word in itself necessarily, but the context matters. Context is where Ms. Jones fails. The happy native is such a disgusting cliche; they live in squalor with all kinds of things that we white folk couldn't tolerate and yet they are happy. These ideas are those of the first explorers. Would anyone care to consciously ally themselves with such patronage and racism?

What matters, then, is what you do with what you call facts, experiences, truths and ideas. It's how you handle your perspectives on gender, race, ethnicity, class, and disability. It's the way that you align the facts (or not) with societal preconceptions about those who are somehow "different."

It doesn't matter whether or not you, personally, don't share the stigmatizing impulses that lead to discrimination and hatred; members of your audience most certainly do. As an artist/performer/writer/..., you have a responsibility to treat those facts in such a way that you don't perpetuate the beliefs that enable harm. You might even take on the responsibility to change the way that people think and act. Or, then again, perhaps not.

"It is not, repeat not, another romanticized white person's spiritual quest on Native lands. Instead it is a lovingly wrought, painfully honest, crowded, poignant, and funny look at all of it," writes reviewer Alison Luterman (on Jones's site). And yet, you have to wonder. How do people read Jones's work? In her blog, Jones notes that people just "melted" around Stanford. Of course, they did: Jones's story, as true as it is, depends on stereotypical language and cheap idealizing. The "melting" is basically programmed into those images of his crippled body, his pain, and his spiritualism. Societally, we know what to do with images of the crippled native healer. We know how to read those stories.

So, even though Ms. Jones comes to narrate her healing (with a modicum of self-awareness), the story she ultimately tells both depends on unquestioned societal interpretive reflexes and reenacts them.

A white woman retreats to Native American life to find a story and is healed by a disabled native man, a man whose very manhood had been redefined by the accident that paralyzes him: "Before his accident, he was as heartless and handsome as a young rebel could be. He was a small-time outlaw who busted broncs, broke hearts, robbed cafes and dealt drugs. After the accident, his 20-year-old body lay unmoving, visited by doctors, nurses, and spirits who began to endow him with unwanted healing powers" (NYT). This story could be one of thousands of what I bitterly refer to "noble savage" stories -- with the exception that this man is disabled. The fact of Mr. Addison's disability kicks the narrative over to the sick/wounded medicine man motif -- the healer who cannot heal himself. From the Preface:

And then there was Stanford. His accident smashed his spine and left him on a slab in the morgue. He revived only to spend the rest of his life in a wheelchair. Along with his physical paralysis came some powerful healing gifts. At first, both his disability and these gifts seemed a terrible burden, but he haltingly came to understand that he had emerged from a small life into a big one. He had broken, broken through, broken out. His body was changed forever, but so was his heart.

Disability figures here in archetypal societally negative ways. We can't live actual physical lives, we live lives of the spirit and of the heart; our bodies are useless and broken. Disability is both a burden (sigh) and a passage to being a better human. No longer the rebel youth, Mr. Addison is now a societally useful person: a healer. And regardless of whether it is true that he lay on a slab in a morgue, does the story have to be one of rebirth -- rebirth into a crippled life that ultimately is his healing?

These are cliches. Broken. Useless. Spiritually barren cliches. How bad it is it? Well, what do people think? The NYT comments on this story are what you would expect -- of the "oh, this is so beautiful, so inspiring type." People know how to read this stuff. Ms. Jones even becomes an "angel" (Commenter #46). This is the danger of writing this story in the way that Ms. Jones does. It's an exoticized "chicken soup for the soul" memoir (my phrase). As a writer, Ms. Jones has a responsibility to do better.

And then, there's the New York Times itself. Readers of the NYT -- a paper with a particularly sucky record on disability, race and ethnicity reporting -- are, for the most part going to identify with Ms. Jones. That's the audience she writes for. A few take points of view similar to my own here -- at least as regards Ms. Jones' use of Native American history and culture. No comments that I have seen understand the disability political and cultural perspective-- currently at 53. (Commenter #19 writes as a disabled person, but her race, class background are not visible. She writes to identify with Mr. Addison)

Not a single commenter has been able to approach the world of a disabled person of colour. And I am not surprised. It is not just that people in general don't have much experience in managing intersectionality and these kinds of complicated issues; it is also that Ms. Jones' writing invites -- nay, facilitates -- this sloppy, trite, prejudicial over-emotional stereotypical response. As a writer and journalist, it is her job to know and do better.

Moving On

2009-09-25T19:46:00.000-07:00

"You can't go out," she kept saying. "I have to keep you safe. The street in't safe." And how I wanted to walk. I wanted to escape that apartment that we were in hour after hour, day after day. I couldn't eat because I hadn't moved. I couldn't breathe because we couldn't risk opening the windows. But I wanted more than to walk away from my work; I wanted to pull on my jogging shoes and run. It wasn't safe. I didn't know it then -- I thought she was exaggerating -- but overall crime rates in my grandmother's neighborhood were shockingly high, even for the early 90's. So, we couldn't just walk.

I paced the apartment. I started a routine. I would jog in front of the window. "Don't open that. Get away from there. They can't know you are here." Then, I would walk back and forth, reimagining the sweat of frustration and cabin fever as the aerobic burning of calories. I was studying and writing papers while staying with Grandma. Grandma, I recall, knew how to walk; she got on her tiny rowing machine -- a device that someone had left in payment for the clothes she had sewn. "One foot in front of the other," she called, laughing at the delicious irony. We exercised together, but I felt cooped.

I was studying hard for qualifying exams. I had gone through sheaves of notes and was still poring over my appalling scrawl when one night she tapped me on the shoulder. It was humid and hot, a typical East Coast summer night; we had no A/C, the neighbors added their music to the stultifying heat. She waggled what we in our family call the "Jamaican finger" (don't ask) at me: "We goin on de street," she declared.

I sighed, frustrated. She'd been at my back all day: "Are you done yet?" I'd tried several times to explain the complexities and competition of academic life to someone who left school at fourteen to be a seamstress. Her family couldn't afford the education for her to be a surgeon; she figured sewing clothes was the next best thing to sewing bodies. I didn't want to stop; I was getting somewhere. Finally, however, I saw the hurt, hope, and mischief in her eyes: we were going out.

My grandmother is a lady of style. She has CLOTHES. She made them all herself in glamorous Jacqueline Kennedy style. She needed only to see it once, and she could make it and several variations on it. I found her in the closet looking for a visor and sneakers. She bundled on several layers of mismatched clothes. Rags that she would rather have used as dusters. "We goin' on de street," her voice said, as she tossed me some things neither of us would be seen dead in.

I barely recognized her. Gone was the strut that came with her heels and in its place an urban shuffle. Head down, sneakers up, she snuck down stairs and on to the sidewalk. Nonplussed, I copied her. "My gran," she nodded to anyone who made so bold as to speak to her. And we walked. Across the road. Into the wetness.

The first time, we hit a MacDonalds for fries. We were bad. Then, it was ice cream -- double bad. Her eyes glowed. Then, I tried chocolate tofutti (god knows why), but somehow that didn't sit well. "Need to take a cleanse," she said, holding her stomach. Over the course of the summer and, indeed, the summer after that, we ate every flavour of ice cream that the shop-rite could offer. She didn't like strawberry, but vanilla and chocolate were fine. Caramel was only OK, but mint chocolate chip was special. Her neighborhood didn't have much. I learned that Burger King had terrible fries, that KFC was worse; MacDonalds and Wendys passed muster. We walked from apartment to store and back. That was our routine.

My grandmother's condition is deteriorating rapidly. She's at that point. It could now be quick (interesting that quick is the Old English word for "life"), or it could be weeks. Months, it probably certainly is not. She's significantly disabled and on top of that has several intense medical conditions that prevent me from caring for her; she lives in a home in the community where she spent the last 25 or so years of her life. She used to have friends and connections who would visit her. I live across the country; I didn't want her to be alone in California, away from the voices of folks from her part of the world. I wanted her to be among the people whose lives she affected, who brought her work -- people with whom she worshipped and broke bread.

Her doctor said today that her life has no point. I was too stunned to respond; I politely thanked her for her help and hung up the phone. The doctor meant in the medical model, of course. A life has to have a function or a reason to have a point. Grandma has had no "function" or reason to live for years, apparently. And in addition to external stimuli and connections, she also meant that Grandma has no internal motivation to live (not sure how she could tell that).

It's true that Grandma's body has changed and that she doesn't live as she used to or even see the people she used to. Her friends have died or gone to their own residential care centers. Her facility is not easily accessible by public transit (sigh); most of her friends depended on the bus. Simultaneously, Grandma herself has become less able to travel. I would have liked to move her closer to me, but I didn't recognize the window of opportunity passing. I should have moved her while she was in the period where she was still able to interact with her friends. Medically (as opposed to disability), she is no longer able to handle either a commercial flight. Nor does she have the health or life skills to adapt to life in a new place. She is too disabled by her most aggressive impairments and too sick from other illness. Moving her across the country poses (so I have been told) a significant risk to her life. So, Grandma has stayed on the East Coast. A friend of the family visited/s often and was/is a local contact.

As we walked in the heat of summer, I learned about her wishes -- perhaps her fears were her fears or perhaps they were her illness speaking. Either way, the woman who once had wished to be a surgeon wanted no medical interventions: no knives, no tubes, no drugs. Her faith -- a hyper literal form of Christianity -- was an important strand in her decision-making. God would call her when He was ready. The body is a shell: burn it. Don't sit and watch me die. I want no fuss. No party. No mourning. She would be ready to move on.

Who knows what should be counted as a reason to live? Who knows what counts as medical care and intervention? Principles are one thing; circumstances are another. Would she, in extremis, change her mind? Would a feeding tube become desirable? Could we resuscitate her?

Do Not Resuscitate -- check.
Do Not Hospitalize -- check.
No Extraordinary Measures -- check.

"Believe and you will receive. Doubt and you go without." -- OK, Grandma -- check.

Lost My Purse

2009-09-19T15:25:00.000-07:00

I was off to brunch this morning with krip friends. I tore out the apartment door and flew down Broadway, skreeing past useless pedestrians. It was Saturday: I wanted food. Unfortunately, such was my speed and such the loose manner in which my purse was attached to my back that my life's identifying objects were lost. boom. gone. right off the back of my chair.

Of course, I didn't exactly notice this -- I was going with the speed demon approach: terrorize some tourists and run with exhilaration. An hour later (all conversation, no food), I notice the unbearable lightness of my backrest. It's all over (I think). So, we all walk back together, navigating the city carefully; we wouldn't want to hurt anyone after all. Hours pass. I cancel my credit cards; work out a list of what was in my bag and wallet (cellphone, driver's license, green card, metrocard, BART card, healthcare information, money, gym card, Purell, lotion, gloves, and two complimentay tix to a furniture and design show in SF); and find out where I should file a police report.

I'm pretty stressed out, but am mostly reconciled to the fact that there's not an awful lot to do but wait and periodically call my phone to see if anyone picks up (actually, it turns out on the iphone that a password prevents that from happening). Then, a series of good things happens. I have google voice -- a service that, among other things, transcribes my voicemails and send them to me as either text messages or emails. I get an email from my doc in California saying some dude in NYC called him to say he had my purse but he couldn't reach me.

"We saw you speeding by us. Really impressed," he explains, "then a few blocks later, we saw your bag on the ground. When we looked inside, we could see your gloves and we recognized you from your license. We ran after you, but you'd gone." There then begins a slow chase through NYC. My phone shows that I rang them using a hotel phone. "No, the wheelchair lady (my friend) has already checked out," intones the front desk. The finders go to the nearby police station. "Leave it with us." The finders think the contents are too important to be left anywhere. So, they go through my stuff.

I've been wondering all day what my stuff reveals about me. No photographs, no reminders, no receipts, no coffee cards, no storecards, no personal stuff. My wallet and bag are all about style and function. At the same time as there is nothing personal -- I like to think of myself as a cipher -- everything you would need to formally steal my identity is available.

"Your life is in that bag." It is.... and it isn't.

Autumn

2009-09-17T22:40:00.000-07:00

That time of year is approaching again.

The sense of dread rises in me as I smell the approach of autumn. Four years ago, I picked up a series of voicemails. In a scattered order, they announced the story of Wizard's accident. Four were from his friends; each was more hysterical than the last. One was actually from the partner of a friend; he was calling to tell me to calm down and that it wasn't as bad as the general panic would suggest. One was from the ER: "This is Dr. X; we have your husband." When I checked my watch, I knew I couldn't make it to the airport in time to catch the redeye to New York; I'd be staying overnight in a hotel, miles away from home, alone, and freaking the fuck out.

I tried to reach Wizard, but the HIPAA rules had recently come into effect. The nursing staff couldn't prove that I was related to him; there was no way to speak to him. I threw a blue fit. As it turned out, it wasn't the first time I was going to be unmentionably rude. When we finally managed to get a word in edgewise, I knew that life was going to be pretty permanently changed.

The next months are a blur.

When I read the police report, I got the name of the person who had run him (and some others) down. I would spend hours on the internet -- into the wee hours of the night -- googling. I got to know the intimate details of his life: his past was there for all the world to read. And I read. Obsessively. History doesn't change on a daily basis, but I would come back from the hospital, get food, and sit there, reading. Night after night. Image search gave me details of his face. I would look at it, searching for signs of evil. Looking for traces of coldheartedness.

I was beyond angry (and probably a little over the line); I actually feel like I might have been able to hurt him. I certainly wanted him to suffer -- particularly as he never apologized, sent a card, sent flowers, etc. You can imagine my horror when about two months into this new life, I saw him at a local cafe. Neither trauma nor guilt were present in his visage. He sat down, ordered a cappuccino and a salad; he read the paper. I stared and stared and stared at him; he had no idea I existed and certainly no inkling of my connection to him. In another life -- the "before the accident" life -- I would have acknowledged him as one of my kind. A lover of certain pursuits, a traveller down similar paths. As it was, I held murder in my heart. Up until then, I'd always seen that feeling as a cliche, but it was real. I could (happily?) have hurt this man.

I knew I couldn't speak to him. This is America. He hadn't contacted us because he probably figured he couldn't admit responsibility, lest we sue. I knew I couldn't speak to him lest I did something for which he could have sued me. It was a stalemate that he didn't even know he was participating in. I watched. And I watched. Then, I left. Given the intensity of this experience, you'd think that I would now be able to remember his name; I can't. I have no idea what he looks like; I remember where his family is originally from; I remember how many degrees he has. I simply cannot remember his name or his face. I have a photographic memory, but I cannot remember his name or face.

It's that time of year again. I wonder whether I pass him in the streets without knowing it. I wonder whether, if I were to recognise him, I would run over his toes. Mostly though, I wonder if he's out there still inflicting harm on others.

Lady Gaga And The Wheelchair

2009-09-16T23:06:00.000-07:00

Everyone has been asking me, "did you see the wheelchair dancer on the VMA? With Lady Gaga?" I didn't. I don't have a television (by choice). Since then, I have been chasing down images and video of this so-called wheelchair dancer: Youtube keeps removing them for reasons of copyright violation. Finally, however, I am in the picture: Lady Gaga shows up dancing with (among other things) a crutch and, about halfway into the song, a woman in a wheelchair is wheeled on by a large muscular African American man.

People let me be clear: There's a lot to say about the racial and gender politics of that performance. There's as much to say about the politics of disability. AND that wasn't an example of dancing in a wheelchair. That was NOT wheelchair dancing. That woman (I don't know whether she is disabled) did not perform as a dancer; she was a prop. If you didn't see it -- this picture is from the mtv site and the video clip is from Lady Gaga's own site (the wheelchair moment is just after the 2 minute marker); I can't post them for copyright reasons.

Anyway, check out the slumped position and revel in the 2 or 3 arm jerks; we don't get to see the woman's face - that might be a feature of camera angle and the clip, though. Is this woman disabled? I suspect not. I suppose that this was some hyper ableist imagination of spasticity and paralysis. But suppose for a moment that she is disabled. Imagine that this movement is what her body does as she dances. Why didn't they stop and explore it? Why not choreograph it so that we can see a disabled body move? And if you want some wild arm flinging movement, why not integrate her into the piece itself. There's some pretty wild arm flinging going on in the non-disabled sphere; she'd fit right in. But no. As usual, the (fake?) disabled person is merely a body wheeled on for display in a piece of gaudy pop art that passes for a wheelchair.

I'm not up for celebrating this piece of scenery as a "historic occasion:" the first time anything disability related shows up at the VMA. I would be impressed if Lady Gaga et al had hired actual dancers who use wheelchairs to be part of the performance. If you don't like any of the arty modern dance/ballet companies and hate ballroom dancing, hire the Colours 'N Motion hip hop dancers. There are disabled dancers who use wheelchairs. But whatever you do and whoever you hire, respect the art, reward the artistry, and support the artists whose work it is to extend their bodies in the power and grace of dance.

Street Encounters #2

2009-09-13T21:45:00.001-07:00

First, I notice her singularities; she's well dressed, unsteady on her feet, overmade up, pushing a grocery cart, and watching over shopping bags from a local upscale store. I cross the road, come up the ramp/kerbcut, and stop as she approaches. "F* you!" she yells. Yes, just like that. I look at her, more than a little surprised. Well-dressed old ladies in velvet hats and suede/velvet shoes don't usually out of the blue yell obscenities at strangers. I say nothing and wheel on.

But the insult stings. It shouldn't, but it does. I look back at her and decide to move on, but part of me wants to have it out with her. I turn back. I glare at her -- and she gets the message; I am pissed.

This doesn't show me in a very good light, but, sigh, here goes. I double back; I'm a little scared of her. Does she have a weapon? Something she can use to hurt me? Then, I see, as I get closer, that now she's a little scared of me. Somehow, though, that doesn't stop me. I wheel up close to her cart (but not her person) and look her straight in the eye. "That was wholly unwarranted," I say in my poshest English accent, "and singularly discourteous." We stare at each other. "You should know better," I say, reaching for my mother's voice. I stare at her, noting again her pearly pink lipstick, the beige-ish blusher, and overall brown tones to her clothing. What is up with this woman? I can't decide whether I want to be menacing or stay on something close to the moral high road. She stares back. No one says another word. I turn and proceed down the street.

Over lunch, Wizard and I discuss her attitude. "Oh, she probably thought you were part of some death panel coming to take her Medicare," he jokes sourly. I try to diagnose her. She wasn't homeless in any obvious sense; was this a psychiatric disability (disability being no respecter of persons and social class)?; Tourette's? Simple meanness? Racism? An overdose of reading the Old Woman/Purple Poem? In the distance, we see the shape of her shopping cart; we watch as she limps in a direction away from us.

I should probably have let it pass; I should certainly have stopped when I realized she was scared of me. I am only a little bit sorry.

Started Posts

2009-09-10T19:48:00.000-07:00

H/t to Maria @intueri for the idea.

My blogger dashboard has drafts of posts that I haven't yet completed. I have either not wanted to complete them or have not been able to finish them. At any rate, I am probably not going to finish them now. They have languished in the drafts section; I look at them every so often and I feel bad, but apparently not enough to get back to them.

Although I have been blogging since 2006, the remaining started and unfinished posts all date from 2008-2009. I have no idea why that is -- perhaps an increase in pain? That was the year in which things went really wild disability and hip wise. Anyway. I want a clean slate. And they are relatively interesting fragments. So, here you are.

Started 7/23/09 Just Another Body

The New York Times reports the decimation (well, not literally) of New York City Ballet's corps de ballet: "11 members of the company’s corps de ballet, some barely in their 20s, who have joined the swelling ranks of laid-off workers nationwide struggling to find new ways in the recession. They were told in February, shortly before the deadline for new contracts to be issued, that their employment would not be renewed, mainly for economic reasons."

What happens to dancers who have been laid off?

Started 3/12/09 A Few Of My Favourite Things

As a child, I wanted things because although I knew how much they cost, I also knew what they were worth: value as a human being.

Continued on 2/7/09 LIRR: A Disability Nightmare

[I think this is a continuation because the original NYT article is from 2008, but blogger has it marked as an 09 post.]

New York Times I grew up speaking of "railways" more than "railroads." Indeed, unless I am thinking specifically of "railroading" someone into something, I mark "railroad" as an American word, a sound, concept, and idea of the country I now live in.

Started 10/28/08 Punished With Art

(NOTE: this is designed to follow this post)

Art as punishment strikes me as just absurd.

I am so tired of the idea that people use art as a kind of wellness tool. Pregnant? Don't forget your vitamins or your baby Mozart CD. Not that you shouldn't play Mozart to your child; it's the idea that you can use art mechanically, as a tool -- a man-made device. Now, we have moved beyond the idea that colour and muzak can somehow be important in influencing civic behaviour into the realm where acknowledged works of art can be useful in maintaining public order. I acknowledge that art can have emotional effects, effects that raise and quell emotion. Art can stupify or enliven. I know that public art often seeks to play with such emotion, but the idea that we control our interactions with art or that one viewer of art can control how another sees the art defies me.

The idea of art as punishment also seems weird. No, let me put that more accurately. This is a softer, say a civilian version of music as torture (interesting papers thereon here, here, and here). To punish with art is an abomination. To torture in any manner is execrable.

At West Coast, we do a lot of school assemblies. It's a weird experience -- drive for an hour or so. Dance for 45 minutes, perhaps wait 30, perhaps dance another 45, and then leave for another hour or so. We get around the whole Bay Area: East Bay, South Bay, Peninsula, and City, and this has given me a lot of exposure to different schools and different school systems. We go to all types of schools. Wealthy schools ask the parents to pay for us -- diversity week -- poorer schools often bring us in under some kind of program. I'm not exactly sure how we get there. But I do know what I see once we arrive.

Society has generally agreed that "Art," or should that be "ART," is a good thing, so, as I toil away, on a canteen floor in a freezing dining hall, I often wonder about what the kids staring at us see. And, sadly, I have the suspicion that what they see correlates all too strongly with the geographical location of the school. And location correlates with money, race, and class. Sigh.

School #1 is located in an area with a median house price of over 3,000 000, and a mean household income is over $200,000. One middle school we visited had TWO, yes 2, count 'em two fully equipped proscenium theaters and a small tech crew on hand to support us. The environment was fake Gothic/Victorian Oxbridge college, and the students were surrounded by other prominent indicators of wealth.

The students at this middle school were obviously accustomed to seeing artistic performance, and we were there as "performer/entertainers." It was our job to win over the students. (Interestingly, I felt the teachers were in a similar position: tutors for the children over powerful people, but not necessarily their "social equals.") We were treated very well ... but we were essentially hired artistic "help." One of the students felt free to comment about the scratches on my chair and my smudged lipstick. When we were done, teachers escorted the students out -- and we left with no further ado. I don't actually know this, but my guess is that there wasn't any follow-up classroom work done to support our performance, either.

OK. So, not everyone has to swoon over us (though that is a preferred response). In this post, though, I am worried about what they saw. At an almost equally wealthy school in another town, we asked the students to define the word "quartet." Answer: 2 violins, a viola, and a cello. Well. I am not going to argue with that. But I do think that this answer connotes a particular relationship to the performing arts and perhaps the arts in general. Someone who in middle school gives that kind of answer will most likely have access to and continue to develop a relationship with the classical aesthetic and critical positions of the canonical Western curriculum.

This in itself would also not be a problem if it weren't for the fact that these students are more likely to inhabit worlds where they are exposed to (and adopt) certain thinking practices and educational values. Our culture values these practices; it values that education. And we reward those who have these credentials and who can do this work well. Very well.

School #2 is located in a district with a median condo value of $450,000 and salary of approximately 53,000. The difference is not just about the facilities. Yes, poorer schools don't have tech crew; we work on dirty canteen floors, in places with no heat, windows that won't close, buildings that look battered. The atmosphere is very different. Some of the teachers chivvy the students more; the students don't seem to notice. Others seem committed to being there for their students; these students respond to them with happiness. We are treated as a valuable resource; we are supported by classroom work and follow up in some cases. In others, we are a treat. There may be no heat, but a teacher volunteers to get us hot water.

As sad as all this is in comparison, I am still worried about what the students see. Overall, fewer of the students are able to give correct factual answers to the questions we ask. That's no big deal. Factual education can grow over time, and your life probably isn't ruined if, in middle school, you don't know what "choreography" and "improvisation" are, but not having had the exposure to the ideas behind the concepts. That bites.

It bites because these kids may never catch up.

Started 10/27/08 Another Me Meme?

Six random things:

I have perfect pitch -- I can tell you the pitch your car runs at; want to know what note your hoover is? I can do that, too. I used to have photographic memory -- pages and pages, location on the page, font used, numbers, numbers -- but it started to fade in my mid twenties and is now pretty unreliable.

Started 8/31/08 Cripple Poetics

Disclaimers:

I know Petra and Neil personally. I have been given a free copy of the book for this review.

Who would want to read these edited conversations between two people who love each other? Why would anyone publish this book? Seriously, what are possible interests and motivations in reading, writing, and publishing a book that charts the courting of two disabled people?

One approach to answering these questions involves considering the value of a book. A book. With pictures -- or, more accurately, photographs -- but very clearly a book. And, moreover, one that crosses boundaries. Kuppers is an associate professor in the English department at UMichigan (Ann Arbor); she will, most likely, count the book in her academic resume, and her colleagues will review it when she seeks promotion. In this context, the book might be seen as a BOOK: a contribution to the canon of knowledge and a work of art (Kuppers and Marcus include their poetry). The materiality of this book registers differently in the context of Marcus's significant body of artistic and activist production. The value that you/we/I assign a book shapes what we might expect of it and of ourselves.

And what of love? Why would I want to read the IMs and personal poetry of two lovers?

Started 7/21/07 Ganked (Almost) Wholly From Torontoist

Pity sex may have gotten some of us through university, but Loree Erickson, a York University PhD candidate and photographer/filmmaker, is determined that it’s not a phrase which should be associated with the disabled.

Concerned about the sexual stigmatization of people with disabilities, she’s put together an evening of film and live performance intended to open minds and shatter stereotypes about sex and disability.

Reclaiming the Gaze will feature two short films by Erickson, as well as performances by AJ Withers, Julie Devaney (My Leaky Body), and Peggy Munson (Origami Striptease).

The event is also a fundraiser for Acsexxable, being touted as Toronto’s first fully accessible sex party. Torontoist rarely gets invited to sex parties of any kind, so we’re rather intrigued by the concept.

Accessible sex party? Wow. I cannot imagine the access arrangements. Big SMILE.

What IF?

2009-09-08T21:53:00.000-07:00

I've been hearing the word "bound" a lot recently -- college-bound, homeward bound, bound for Ohio, bound for Detroit, etc. "Bound" in this sense is used to suggest "prepared or purposing to go, starting, directing one's course, destined" (OED: subscription only). My nasty little mind immediately begins to wonder about that dreaded "wheelchair bound." What if "wheelchair bound" meant not "trapped in" or even "strapped to" your wheelchair, but "prepared for," "destined," "voluntarily directing one's course for?"

To a certain extent, I suppose, the TAB to disabled thing means that, should people live long enough, they will all "end up" bound to their chairs; it is a destiny of sorts. One to which we voluntarily head? Well, that I dunno. But what if this were the general understanding of how these things work?

I can begin to imagine a world in which wheelchair use is not a problem; it is an accessible world, a place in which disability is simply diversity. I cannot imagine a world in which wheelchair bound is said with the pride and sense of accomplishment as college bound. A place in which the frailty of the body is as accepted/desired/normalized as the destination of a flight. Of course, we all end up in wheelchairs. That's just what happens.

Bay Area Events!!!

2009-09-05T23:00:00.000-07:00

Kaleidoscope, The Third Annual National People of Color Cabaret

“The ﬁrst of its kind in burlesque”
www.kaleidoscopecabaret.com

San Francisco, CA -- August 26, 2009 -- The ﬁrst of its kind in burlesque, Kaleidoscope show-cases performers of color. The broad range of performances include drag, burlesque, song, and aerial art which promises to be erotic, sexy, and witty. Enjoy the nation’s best in burlesque and buy your tickets now. The show will take place at the historic Brava Theater on 2781 - 24th Street in San Francisco on September 26, 2009. Doors open at 7pm and the show begins at 8pm, buy your tickets at the door for $25 in cash or in advance for $20 at www.brownpapertickets.com

Don’t forget to join us September 25th and 26th for an array of pre-show workshops. Explore your understanding of desire while learning saucy choreography, DIY costuming, make-up application, pasty-making, tassle-twirling, glove removal, and other tricks of the trade from the pros. Visit www.kaleidoscopecabaret.com for more information.

This year’s line up is hosted by her most imperial sovereign majesty, Aleksa Manila (Seattle). Starring burlesque legend, Toni Elling (Detroit); the Creole queen of burlesque, Desire D’Amour (Tucson); femme fatale, Orchid Mei (Denver); the comedic song bird, Sheu Sheu L’Haure (Montana); Southern queer beauty, The Lady Ms. Vagina Jenkins (Atlanta); the tempestuous temple of temptation, Shanghai Pearl (Seattle); and ﬂirty theory-readin’ femme, Ginger Snapz (Seattle).

Kaleidoscope will feature the best local performers of color in the Bay Area. Featuring founder of Harlem Shake, Simone De La Getto: queen of Carnaval, Kellita of Hot Pink Feathers; the shimmy of the Bay, Cherry Gallete; fashionista drag fag, Thisway/Thatway; fussy drag queen/king, Charleston Chu; and “La sin verguenza” show founder and Ms Gay Latina 2005 and 2006, La Chica Boom.

Our mission is to entertain and cast light on the knowledge, actions, and transformations that pertain to people of color performance and race-positive sexuality.

For more information go to www.kaleidoscopecabaret.com

This show is co-sponsored by Communities United Against Violence (CUAV)

****************

4th annual –

Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility

Friday, October 2nd 2009 @ 8 pm

Saturday, October 3rd 2009 @ 8 pm (ASL Interpreted by Stage Hands)

Sunday, October 4th 2009 @ 7 pm

Brava Theater

San Francisco

2789 24th Street at York

Sins Invalid is a performance event celebrating the power of embodiment and the tenderness of struggle, stripping taboos off of sexuality and disability and offering a vision of beauty that includes all bodies and all communities. Join Sins Invalid as a night of resistance to invisibility!

Artists include:

Aurora Levins Morales

Cara Page

Antoine Hunter

Mat Fraser

John Benson

Maria Palacios

Ralph Dickinson

Leah Lakshmi Piepzna-Samarasinha

Nomy Lamm

Todd Herman

Leroy F. Moore Jr.

Seeley Quest

Patty Berne

Supported by the Aepoch Fund, the San Francisco Arts Commission and the Zellerbach Family Foundation

Wheelchair accessible. Although we cannot guarantee a scent free environment, we ask that people please refrain from using scented products.

Please Note: Show contains explicit content

Tickets are available at www.brownpapertickets.com and for cash at the door on a first-come-first-served basis.

For more info please call 510-689-7198 www.sinsinvalid.org

Taking Flight.

2009-09-03T14:04:00.000-07:00

Softly, gently, and carefully. Then a huge spring and a push. We're onboard. The flight lifts off with force; we rock back against our seats. Mt. Shasta off to the right of our wing. A feeling of uncontrolled descent as, nose down, we see the runway surge into sight. And then, it's over. We hit the ground; breathe; and laugh: another successful small plane flight.

Our van shows up pretty easily. That's cool. Then, the hotel staff director of sales comes out to greet us. This trip feels special: it's been a long time since all the logistics have worked like clock work. It's been ages since we were last welcomed as performers.

Not sure what comes next. More logistics for certain: lunch would be my priority. Checking out the stage. That would be nice. And buying stuff I forgot.

Exorcising Ghosts

2009-08-30T19:18:00.000-07:00

In the belief/hope that narrative can formalize and clarify and insodoing clear the remnants:

The other night, Wizard and I were walking through the streets of San Francisco. It'd been a nice night; we'd seen some amazing dance and talked with amazing people. We were floating, hand in hand, and gazing at the clothing displays. I think we were surprised when a man interposed himself between us. "No respect from wheelchair," was all I could understand of his verbal communication. His body language, however, was clear: I was not going to pass.

I made several tries -- talking to him all the while. Wizard made several mild interjections. My impression and recollections are of him stuttering in shock. Deadlock. No one moved. In retrospect, it was kind of like a dance -- everyone with their arms out and no one going anywhere -- but the tension was high. He had his face next to mine; Wizard had his arm between us. Finally, the man wanted to grasp my hair; he reached; Wizard roared -- surprised the crap out of me and the man, too. We both looked at him, both taken aback. I used the opportunity to pull backwards away from him. He used the opportunity to move to my side.

Wizard told him to leave in a tone of voice that quite clearly registered firm, soft menace. He touched my hair and turned to walk away. The situation was over, Wizard and I thought -- and then, in disgust, he kicked my chair.

What was this about? Who freaking knows? Disability? My disability? Respect on the street? A black woman with a white man? Having and not having? I have no clue. I wonder if it would have been different if I had been alone. Could I have talked him down by being friendly? Would he have seen Wizard as a threat? Did Wizard escalate what would have been a not terribly unusual SF street encounter?

Was I really dependent on Wizard's strength and power as a man? Or did his masculinity make things worse? There's something weirdly funny about trying to see Wizard as some kind of "manly, bwaarrrgh, flex his muscles" man -- yeah, I know that's not what masculinity is about.... But honestly, he's a computer geek -- not the most obvious type to depend on in situations of strength and dominance. Even more funny? I have more experience fighting in these kinds of situations than Wizard: I grew up exploring how to land a punch -- this was the experience of my school days. I don't think he's has ever been in a real "fight." I also took karate as a kid -- one of the few things my mother did to help me be safe at school.

I did feel scared. The vibration of that kick and the feel of his hand did not fade immediately. I don't usually feel vulnerable and I don't think that he meant us any harm. He just wanted respect. In the worst case scenario, we could have taken him, and there were other people around. If we had yelled and screamed, I hope they would have come to our aid. And yet: I am not sure of what to do with this encounter. Over to you.

Wizard writes: WCD and I were walking down the street, talking and looking with interest at the surroundings (mainly empty commercial space); we were moving briskly to get to our room, and to sleep, as soon as possible. As WCD was tired, I alternated between pulling her hand and, when the slope of the sidewalk became too steep for comfort, pushing her. We had, without slowing down, deftly maneuvered around two or three isolated disheveled people walking slowly. I was proud of our precision movement partnership. And then we came upon another disheveled guy, coming towards us.

When we were 20 feet and a few seconds away, he moved from side-to-side so that we couldn't avoid him. As we slowed we were able to turn sharply, but he jumped in front of WCD so we had to stop. (One limitation of a chair is that it can only move along the axis it is pointed, and it takes time and energy to change the axis. In contrast, a legging person can jump 2 feet instantly in any direction.) He was verbally aggressive and way, way too close. He complained of a lack of respect. We gave our apologies, directly to his face, and asked him to excuse us on our way, but he came closer. He was uncomfortably interested in how beautiful WCD was.

I was appropriately scared, not too much to act effectively but enough to be instantly completely focused, so let's hear it for the adrenal system! The guy seemed to want to relate to WCD directly, ignoring me, so I made it clear up front that WCD and I were in this together. Respectfully but firmly, and somewhat louder each time, I kept asking to pass and squeezed between the man and WCD. But when he made to touch WCD against her wishes, things were going in the wrong direction and I addressed him directly and vigorously. He was surprised, he moved slightly away, and we went past. He kicked the back of WCD's chair as we left, and then he retreated quickly. WCD paused in anger, sighed, and seemed to want to engage the guy about that, but I pulled her onward towards the hotel.

My experience of this was quite different from WCD's. As WCD and I discussed at the hotel, I moved between her and the guy multiple times, screening her off for escape, and she didn't go. She said she didn't want to leave me alone with the guy. How could it be okay for that guy -- too dangerous to leave me with -- to touch her in such a vulnerable place as her hair? I may not fight well, but I can run faster than an out of shape guy 15 years older with bad shoes. WCD, when you have the opportunity to get away, take it -- first to defuse a situation if you are the focus of it, and second so I can run if necessary. You're fooling yourself if you think we had other options than acquiescence, verbal resistance, or running away. Don't acquiesce to things that make you more vulnerable. Don't argue with unreasonable people or try to persuade them. Respect but resist firmly. And leave before you lose the option.

More On Performance and Physically Integrated Dance

2009-08-27T20:29:00.000-07:00

A blind friend pointed out that dance is not just a movement art. It is a visual art. The audience mostly watches. I always think of dance as a movement art and of physically integrated dance as a particularly successful inclusive form of same. I've written a couple of posts about it here and here. Particularly key, though, are these ideas:

PID is about the ways a dancer moves in his or her body and also about what I see as the positive effect it can have on the audience. It seems kind of cheap to say that I am looking for an integratedness as the effect of PID, but that is what stands out to me.

Too often, I think, you go to a dance performance and see bodies on the extreme doing extreme things. They can be very beautiful and very effective, but the usual dancer body tends to be if not alienating at least in a different world. You can marvel at it, enjoy it, be moved by it, but not necessarily own it in your own body. If you are not a dancer, you know that you could *never* do that.

I think the effects of the representations of the body we see in PID are very different. The movement that, for me, defines the genre communicates a certain awareness and acceptance of the body. I think it communicates a deep engagement with embodiment. By which I mean, an understanding of the reality of the body -- something I think that disabled dancers can really bring to the field. I also mean an engagement with the idea that we know, perceive, and learn through our bodies.

Not sure whether that's clear. For me, a successful PID performance has me admiring the aesthetics, yes. It has me appreciating the social value of dancing PWDs, yes. But it also brings about within me a deep sense of recognition of the power and potential of the body. It's an embracing of the body -- any body -- the fleshly body as a beautiful thing in itself. A thing that can change the world, a thing to be admired; the thing that unites us, a central part of our humanity. PID is different from other dance forms in that the diversity of bodies on stage inherently enables everyone involved in the process of producing a performance (and, yes, that includes audience members -- no performance without you!) to engage in a deep knowing, acceptance, and embracing of all bodies.

I am deeply focused on that sense of integration. I think, particularly to a non-disabled person, that the movement of a disabled body and the mutuality of the dance for nondisableds and disabled together raise questions about embodiment that are so deep, so fundamental that even though you know you couldn't possibly do "any of that" you gain a new understanding of how we humans exist and the potential for connection.

How, then, to produce audio description that differentiates a dance piece from a work of visual or plastic art? I remember an ASL interpretation of a dance piece. Usually, ASL interpreters were placed out of sight of the dancers, way off in a corner of the stage, almost behind the curtain. In this location -- I've forgotten where -- the interpreter placed himself at the front of the stage; he was lit. His interpretation was both, as I understand it, a "good one," and it was a dance. Somehow or other, the interpretation became an integral part of the piece and not just an addition. I would look up and see him looking at me; we'd breathe and then go on. It was AWESOME. How to provide an audio description that is also part of the dance -- for both dancers and members of the audience?

In the comments to an earlier post, Diane reminds me not to overthink reception: performance is a gift. I agree. But I also worry about what happens when I am entrapped by the gift that I have given. It is one thing to give a gift and relinquish all control over it. That's what performance is about. But it is another to give a gift and to be imprisoned by how an audience member understands it. We are so vulnerable when we perform. Not just because of the physical risks we take, but because our presence and commitment to the movement are stripping. Revealing. We yield ourselves to the possibility of scorn, mockery, boredom, excitement, happiness, exhilaration, etc. And we have no control. We can only move. Communicate.

And hope beyond hope that what we have to say is seen as more than the old, familiar, ugly stories of disability.

That's why I insist on seeing physically integrated dance as more than a mix of dancers and "non-dancers," disabled and non-disableds. As an art form, physically integrated dance takes trained dancers -- disabled and non -- and launches them on a collaboration of bodies. (This is in response to Anon's comment on my post on Merce and Wheelchairs.) It's the mutuality between disabled and non and the potential for an accepting, kinesthetic effect on the audience that together define physically integrated dance.

Physically integrated dance does not necessarily encourage non-dancers to join in more than, say, (post) modern/contemporary dance in recent years, so I want to be wary of using the term "physically integrated dance" in this context. Granted, placing disabled and non-disabled movers in the same performance space provides a certain degree of integration, that doesn't necessarily make it physically integrated dance. As a professional art form, physically integrated dance uses trained non-disabled dancers AND trained disabled dancers. The freedom for non-trained dancers, disabled or non, to move together with or without trained dancers is not necessarily equivalent to physically integrated dance.

Elephants

2009-08-21T19:49:00.000-07:00

We're back at the central questions: when you have disabled person on stage is the dance about disability, the person as a person, the relationship between disableds and nons, what do you do about that wheelchair?

Some things I find problematic.

You know? When you're dancing, I didn't even see your wheelchair? I don't even see you as disabled. (What'cha lookin' at, dude? This here's metal!)
It was so nice to see the chairs doing stuff, leading. (My chair does nothing without me. Do let me know what you saw!)
Dance is so healing! (Not necessarily. There's a bunch of dance injuries on this body, I can tell you -- get over your over emo-self).
It was almost as if you weren't in a chair! (Well, damn.)

These are all meant to be positive comments, really. I get that. But all the same.

Wizard remarks that it might be like trying not to think of elephants. Try it. There. You thought of one, right? Sooo, what would that mean for a dance? Well, you might end up with a work like GIMP The GIMPsters make this an explicit part of their work: performers speak directly to the audience about their perceptions and stereotypes. This work is a confrontation, an exploration, and a seduction on the topic.

But what if you don't want to do that? How much are you forced into examining that question? How much does your audience bring so that regardless of your intention, the audience still thinks its a work about disability? What would it mean to take hold of an audience in such a way that they could see a wheelchair qua wheelchair, recognize it as part of my body, and still think of the two of us as disabled?