Wheelchair Dancer

Diagnosis Of A Faun

2009-11-26T16:39:00.000-08:00

The last lines are killer:

“This isn’t a cure,” Mr. Mozgala said. “I’m always going to have cerebral palsy.”
But now he doesn’t feel so enslaved by it.

Closes mouth. Well, this really is a time for talking about disability and dance. Now, we have this piece of "high class" reporting on an actual person with a disability who will be making his dance debut, and, yes, the culprit is the New York Times. The article title is "Learning His Body, Learning to Dance," but the title on the html tab in my browser is "Overcoming Cerebral Palsy, Gregg..." And that knowing little piece tells all.

From the very beginning, you know the article is going to be a problem in oh-so-many ways:

Gregg Mozgala, a 31-year-old actor with cerebral palsy, had 12 years of physical therapy while he was growing up. But in the last eight months, a determined choreographer with an unconventional résumé has done what all those therapists could not: She has dramatically changed the way Mr. Mozgala walks.

Determined outsider triumphs over mainstream medical, using a disabled artist as her protege/experiment. If not dance as therapy, the therapeutic effects of dance. Those are the storylines here; not Mr. Mozgala or even the piece itself -- which, btw, I hope to see in June if not in December. So, here, we go.

Mozgala does not gain much space in the article except as a medical project with a weird gait: his CP has "caused him to walk for most of his life like 'a human velociraptor,' as he put it: up on his toes, lower extremities turned in, seesawing from side to side to maintain balance." In fact, we don't hear much about his acting career; he's more of a specimen. Once, we've got the details of an enslaving CP out the way; the whole thing starts out with an outside: a choreographer who has done with with nontraditional dancers (my phrase) -- the article's author, Neil Genzlinger says "outside normal dance parameters. She sees Mozgala and is "inspired." Yeah. That thing.

We don't hear much about the piece: "The piece has antecedents in “Afternoon of a Faun,” the Nijinsky ballet. Mr. Mozgala plays a 5,000-year-old Faun who turns up in a modern-day hospital as the work explores the intersection of science and art." A disabled dancer shows up in a modern day hospital? Exploring the intersection that he is currently experiencing? And make no bones about it, he is represented in this report as a medical project. The choreographer reports back to a high profile rheumatologist at HSS; rheumatologist says that though the shake it and dance treatment may not work for everyone, the choreographer's work (not the dancer's work) does demonstrate the newish concept of neuroplasticity. Oh Sigh.

It turns out, from the video, that Mozgala is a beautiful mover. But you wouldn't know that from the article; Genzlinger's focus is on the therapeutic value of dance. Does this man have an artistic bone in his body? A single mover's movement? An artist's eye? If he does, you wouldn't know that from his writing here.

The doctor has the last word: “'It’s not over,' he said. 'There’s always a chance to change. You should not — you dare not — give up.'" And so it is that Mr. Mozgala goes from "falling with style" to, if he concentrates, passing. Don't get me wrong; that's a beautiful thing: it's nice to have options and really powerful to know your body can grow and change. In the past year, I have worked my ass off and have seen the progress afforded me by neuroplasticity. But the medical model of disability isn't always right about these things -- and not giving up can take many forms. Simply getting out of bed can be an act of resistance.

And beyond all that, I fail to see why the medical model should have the last word here in a piece that should have been about the art of the dance.

A Language of Moving

2009-11-21T18:44:00.000-08:00

The recent tsunami of non-disabled actors pushing wheelchairs around (Danny in CSI: NY? That Glee thing? -- Awful) has prompted me to think about how you might describe moving around in your wheelchair. I can't erase the image of their panicked repeated pushing at the wheel from my inner eye. Somewhere, in the back of my mind, I suppose I hope that by beginning a language of moving, I might be able to communicate that using a wheelchair has modes. That wheels have their own, rich vocabulary. That wheels are an experience in themselves.

The other day, I said to the guy in the store something about running and getting it. His response was, "Well, you won't run." True enough, but I am using the same language to describe some of my movements. Running, for example, is only partly about the speed; it is also about the intentions and emotions that come with it: a sense of joy and freedom, a sense of stress and behindness, a devotion to the regularity of the strokes (kinda like counting steps), a deep pleasure in the potential of the body, etc. So, there's term #1. Running: a mode of travel not dependent on feet.

Walking can be like running, but I like to think about walking as having some additional non-ped features: walking as a mode of exploring the world, thinking, as a daily and purely functional way to navigate the world. Walking is the thing you do, functionally, to cross a room and, epistemologically, to ground yourself in daily experience; a larger post of mine on walking is here.

In addition to modes of moving, the Glee pushers remind me to talk about *how* I move the wheel and not just the way in which I move. We tend to talk casually about the "push" or the "stroke," but I think those things are literal expressions of ways of striking the wheel. I can stroke the wheel with my fingers -- it's a sexy feeling. And when I do it, I feel every last ridge of the tyre as it passes under my fingers. My fingers are the things to watch; they love and caress the wheel as it rolls underneath my hands.

I can push the wheel: I use a different part of my hand to push and that registers deeply with me in contrast to, for example, turning back and pulling the wheel. When I push, I feel the force ride up through my body as my shoulder push down and out. It's a move of power, yes, but it is also a move that looks for the momentum of the chair. *I* emerge from the push. It's a move that suggests a butterfly coming out of its chrysalis; instead, my body picks up the forward movement and together we ride the power out into the world.

I can pull with force -- a movement that is initiated deep in my core -- or I can pull with my hands and feel the wheel ride through my third finger. I pull bending my body down; I think about the curve of my back. I feel the power rise; I pull. Or I just flatten the palm of my hand on the wheel, curve my fingers under, and pull.

Like many other wheelers, I more often than not have my hands on the wheel and not the rims; I have wheelers hands. And despite all the work that people have done with me for my shoulders, I still use the wheel. (Sigh). And I differentiate pulling from yanking, for example. I pull for strength, but yank, perhaps for speed or frustration. I pull with and for length; yanks, by contrast, are short.

Pushing. Pulling. Yanking. Slamming (yeah, slam dancing is old, but the wheelchair version...?). Twisting. Turning. Rolling. No matter how I move, I have to trust my chair -- know how to judge the effect of a pull on different terrains, on different surfaces. I have to know what impact my hands and fingers are having on the tires. I have to understand how a chair moves and what my weight does to that movement.

I don't think this way every moment of everyday. Most of the power that generates movement -- most pushes or pulls -- are what a dancer might call pedestrian movement. But this language and these ways of initiating movement cannot be learned overnight -- they can't be crammed from some kind of primer -- they are the product of a true partnership of body and chair.

Victim Art

2009-11-20T14:46:00.000-08:00

The LA Times Blog asks whether this is art:

In the U.K. next month, a dance artist who has epilepsy will attempt to induce a seizure on stage. Rita Marcalo has stopped taking her medication ahead of the event at the Bradford Playhouse, according to the BBC News. "If she has a seizure, an alarm will sound and the audience will be invited to film on their mobile phones," said the report.

And the writer, David Ng, goes on to link Ms. Marcalo's performance to the debate about "victim art," illness, disability, and other kinds of so-called imperfect bodies on stage. If you don't know the whole saga, the victim art thing started with a New Yorker reviewer, Arlene Croce, who once famously would not go to see a piece by Bill T. Jones (it dealt with HIV/AIDS and dying) and then reviewed it anyway. A summary of her essay is here.

Croce's "review" was controversial; she took a lot of heat for her outspoken prejudice. But she expressed the contemporary opinion of a good number of critics and artists in various fields of performance. She gave voice to a kind cultural fear that, for the most part, has passed, but remains in the reluctance of audiences and critics to, say, come to see a physically integrated dance company or watch fat or older dancers.

Though Ng links to Joyce Carol Oates' lengthy and brilliant response (it is such a piece of its era), he also stacks the debate by quoting some of Croce's hardest lines, because to him, her perspective seems "surprisingly relevant today:"

In her 1994 article, Croce wrote that "the cultivation of victimhood by institutions devoted to the care of art is a menace to all art forms, particularly performing-art forms."
She also blasts audiences who would want to attend such a performance: "Instead of compassion, these performers induce, and even invite, a cozy kind of complicity. When a victim artist finds his or her public, a perfect, mutually manipulative union is formed which no critic may put asunder."

I'm not sure what I think. I don't know whether I would go to see such a performance. I don't know whether I would call it art. I do think that inviting someone to film you at your most vulnerable moments is a gutsy statement of human vulnerability. And it forces me to think about what I call art.

Usually, I think of art as being the result/product/performance of a skill that is not commonly shared among people. Marcalo asks us to watch a moment of absolute lack of control. Usually, art is in the execution of the extraordinary -- a painting, an image, a photograph, the playing of a piece of music -- we are asked to watch a moment of incredible consciousness and intention. Marcalo strips that down. The way her body will move in the grip of a seizure may well be extraordinary, but it will also not be intended or conscious. Marcalo's very idea makes me think. And think and think.

If we believe in Marcalo's work as a piece of successful and provocative art, she will have succeeded in reversing (if only for a moment) some of the oldest understandings of art and performance. She wouldn't be the first, of course, to tackle notions of control, superlative execution, and extraordinary humanness. But her performance would rank alongside the work of, say, menstruation artists and Tracey Emin's 2000 Turner Prize winning bed sheets. The things that differentiate Marcalo from the others are her desire for the audience to create the static record of her seizure: the image, the record, the prize-winning piece that is something an audience member creates. And then, there's the disability thing.

Is disability any more or less controversial than menstruation? It seems so. I would argue that if you can accept shit, menstrual blood, and other kinds of bodily effluvia, you can probably deal with a seizure. The human body is a work of art; we like watching it compete in athletics and sport. We like it, when we make love to it or when we are made love to. Why can't we watch it in performance of disability?

Hip Update

2009-11-19T19:31:00.000-08:00

A couple of days ago, I was out with a wheeling friend talking about ... well, you know ... is there anything else to talk about right now? No, of course, not. We were talking about Glee. Snarkily (I love her), she asked, "What self-respecting wheelie does wheelies with tip bars on?" I touch my wheels. "The whole point is that you learn not to fall on your head."

She has a point about anti-tips and wheelie functionality. Unless you have a sport-specific fifth wheel, anti-tips aren't terribly functional for moving around. They prevent you from falling backwards, yes, but the tiny wheels aren't really designed to carry your weight or absorb any torque (Wizard and I once talked about popping my wheels off and wheelie-ing down the aisle of an airplane in order to avoid using an aisle chair). If you are using a wheelie in every day life to hop a curb or go downhill or down a flight of stairs (still haven't got this one quite right), you don't want anti tips on; you can't get the height and range of motion to clear the curb. And in the case of the stairs, they will wreck your balance and make your wheelbase too long to be on a given step. Dangerous.

I was thinking this through and popped a wheelie as a way of feeling out how an anti-tip would block me. (Dancers like to think physically.) Instead of just flopping back down with gravity, I randomly tried to control the way down, to return so slowly that I was just barely moving and saw the light. You probably all know this and do it every day in everything you do. And you'd think that after a year of intense physical therapy and rehabilitative exercise -- yes, it's just a week shy of the one year anniversary of my hip surgery -- that I would get the point. Well, no. Apparently not.

I'm so excited about this -- it will totally change my experience of movement and, in particular, my push. It will give my chair a different kind of momentum, too. I can't wait to see if this will become my regular way of moving through the world, something I retain only for dance, or if it is something I totally misunderstood about what they are saying and what my body is doing.

the hip surgery

A year ago, I underwent surgery for a hip femoro-acetabular impingement, a torn labrum, cyst removal, nerve release, and thermal capsulorrhaphy. While the execution of the surgery was successful, the recovery was and is longer and harder than either I or the surgeon anticipated. Indeed, at several points, it seemed like my spasticity stuff was endangering the capsulorrhaphy (a procedure in which they heat (read burn the hell out of the) the hip capsule, shrinking it so that range of motion is reduced and stability produced. "Snugging you up" is what the surgeon called it. (eeuwww)

Anyway, the daily continuous pain is gone -- it hurts, yes, some days a lot, yes, but the awful pain has gone -- the top of my quad is still kinda funky and I still have hip flexor issues, but the most recent MRI showed that the joint is healthy and stable. HOOOORAAYYYYY!!!!

Anyway. Point is that all the aqua therapy, land resistance bands, and movement system peeps have stressed the importance of strength in the eccentric contraction and of intentionally managing the changeover from concentric to eccentric. Despite all the physical work I do, I have not been able to feel this or make it happen. I can see the effects of it in my dancer colleagues -- that's how they get that "dancy" look. You know the one I mean? The one that makes you melt when a dancer lifts and lowers her arm? I can see it, but I haven't known how to do it.

As I am lowering my chair, I suddenly feel the change in direction. And there I am -- going backwards and forwards, managing to keep conscious muscle control in both directions and through the changeover.

The same thing, I discover, applies to pushing. They've been talking for a while about pushing like a piston. I know how to apply strength in the downward part of the stroke, but then I stop, wait, and just come back any old how. I haven't been able to gain a sense of continuous circularity in my stroke. NB: I don't mean circularity in the shoulder here -- you don't want to be riding your shoulders over the arch of your wheel (as if you were shrugging) as you push -- that will trash your shoulders pretty quickly. I am talking about managing the antagonist muscles and the changeover. I'm not doing a good job of describing this -- if I get a better handle on it, I will let you know.

This morning, I don't seem to be able to recreate the sensation, but you can bet next week I will be talking with my PT. Did I have it right? Is this what you meant? In the meantime, however, call it the silver lining from the awful Glee episode....

Wheelie Catholic Made Me Do It

2009-11-19T02:40:00.000-08:00

Tickets obtained, I searched for the conductor/guard to get the portable ramp. I ran up and down the platform, but no such person was to be found. I gave my bag to a kindly looking chap with a shaven head and a pink mini-mohawk. Then, I backed up, tore across the platform, and hurled myself at the train; arms outstretched, I grabbed the bars and pulled myself in with such speed that I was barely able to stop myself from going too far towards the door on the other side. I was on board.

In the interim, of course, someone had found the conductor; she was irritated to find me on board. "You called me down here to tell me you needed the ramp? You delayed me for that? I thought you was in trouble...." Not a good start to the day. (She was also on the train for my return journey, but she had changed her tune: "Don't you jump off this train. You wait. You hear me now?") I was off to see WheelieCatholic for the day.

And what a day.

At the mall, I chased behind her, scaring the shoppers. WheelieCatholic loves to move quickly in her powerchair (the Beast). One gratuitous comment for the whole day? "You two look like you are ready for a race;" WheelieCatholic zooms up the ramp; I follow with what I hope is style if not pure speed. We ate our fave junk food -- no one wanted to help us more than we wanted. And we went on -- to the clothing shops. After all, ya gotta look even if you don't buy.

We were in the elevator talking so much that we didn't notice that, although some time had passed, we were still on the same floor. We rolled out of the elevator laughing and talking -- "You two ladies changed your mind?" -- we barely noticed the man until seconds later WheelieCatholic noticed that we were still looking at men's underwear -- and not because we wanted to.

She dared me to try on something wild; we passed fake fur boleros. Yes, those counted, but my eyes were very definitely on the shiny. Everything this year is metallic, sequinned, and shiny: oooo, lucky, lucky magpie me. A gold sweater we deemed not radical enough -- great colour though. We swirled through the store at a wacky wild pace and landed on this dress. Shinyyyyyyy. An accessible changing room held both of us as the glittery dress shimmied on to my body. WheelieCatholic took the pik on my phone -- you gotta preserve such images. Much as I'd like to, I don't think I have the courage to wear this out in every day life.

Mainly, though, we talked. We talked from the moment we got into her van -- a phone call. "Hey, I'm behind you!" Weird, because I was so excited about the day that I caught an early train; she seemed to have sensed this and was there early, too? We talked as she showed me around her town -- very pretty in fall. We talked as we hit the mall. We talked all the way through the shop and back out the door. We screamed with laughter as we whipped around the aisles, talking and pointing. People just fell to the sides to let us through -- no hassles. We talked all the way to the train station.

For a second, WheelieCatholic parked across two spaces (disabled parking at her station doesn't include room for a ramp!); I rolled down her ramp and across to the platform. As I turned my head to wave, she was pulling out of her spots (quickly and safely); then, she was gone. I came alone, but I felt more alone when she left. Being in community with someone else is just so incredible.

She posted first; here is her account of the day. Awesomeness.

Glee

2009-11-13T07:04:00.000-08:00

At first, I was bitter and annoyed. But not outraged. There's nothing new about the movie and television industries choosing non-disabled actors to play the parts of disabled people. Nothing new there at all. I was disappointed, but not outraged.

As the season wore on, I found I could not stand watching Brothers: casting a disabled guy doesn't work for me -- so what if he's black? -- if the show itself is occasionally racist, mostly misogynistic, and basically weak. I continued to watch for appearances of Robert David Hall on CSI (yayy!); booed Danny's recovery on CSI: NY; downloaded Season 2 of Breaking Bad; I saw the Private Practice episode --is he a continuing character? And my heart sank when, apparently unable to get the point, the Glee producers decided to announce their big wheelchair number. How bad could it be? The hype-inducing newspaper article previews were nauseating; I went ahead and hid: I had a show to do. This morning the internet was ablaze! I went to Hulu and watched it.

How bad could it be? OMG. It was bad. Various newspaper articles mention (as if it were cool) the difficulty the cast had learning to use their chairs. Here's a preview.

Oh, yes. Bad.

“It was the scariest number we had done,” says Woodlee [the choreographer]. “You don’t know what those chairs can do, and you don’t know what those kids can do in the chairs. So a lot of it was just cross your fingers and pray.”
Prayers were called for while the cast learned the routine. At first, the stage’s ramps were too steep and the actors couldn’t get up them in their chairs. Even after the stages were rebuilt, it took the actors a while to learn how to move. Many found that if they didn’t shift their weight correctly, they quickly flipped backwards. (New York Post: h/t Lawrence Carter Long)

Or:

“Artie doesn’t get to get up ever, so I didn’t want anyone to get up,” said Murphy, who wanted viewers to see the effort that comes with performing in a wheelchair.

“If it looked too fun and easy, it wouldn’t read right,” Woodlee said. “Ryan really wanted people to understand what Artie deals with.”

That means those sweaty faces are the real deal.
“Yeah, that wasn’t acting,” McHale said with a laugh. “Lea had the wheelchair from hell. I don’t know if she was missing safety locks or what, but every time she leaned back, she would fall. She fell more than the rest of us. (LA Times blog.)

Poor babies. And those chairs? Who knows what they will do next.

What is the point of all that, eh? It's hard to use a wheelchair? Really? Gosh, those disabled people must be so brave and so strong if even we, a cast of actors can't do it. How do those poor disabled people manage?

Mmmm. How indeed.

And then there's the sad fact of the "dancing;" the choreography sucks. The one potentially interesting move that McHale supposedly "does" is a cut -- he wheelies on one rear wheel. The rest is notable only for the way that it shows that able-bodied, non-wheelchair-using folk really do think of chairs as bicycles you move with your arms. There's absolutely no body-chair integration at all. They think of sitting in a chair as being only about not being able to move their legs (and in Artie's case as being about having his hips and legs twisted to one side). That mistaken understanding leads to some very weird looking people in chairs. On chairs would be a better phrase for it. The fake paralysis of their legs somehow wends its way up their bodies so that they are really only able to push with their elbows (no wonder they have sore arms!).

It's so interesting watching them try to dance. Push. Make a dance gesture. Push. And they are only able to muster up those little beginner pushes. You know the ones I mean? The frantic shoves at the wheel? They push, the wheel doesn't respond; they don't know how to ride a stroke and feel the momentum. This means that they basically either push the chairs around in formations (because they can't dance and push) or keep the chair still and hurl their upper bodies and arms around. Hilarious. Explains the weak choreography, too. Understand how a disabled dancer moves with the chair, Mr. Woodlee, and you will be able to create something a little better than bad dance.

More disturbing is the rest of the disability stuff in the episode. Artie has an SCI, and he still has "full use of his penis." Wow. Those enlightened Glee writers. Where did they discover that useful idea? Suddenly, then, from going from no disabled characters, we suddenly get introduced to 2, new disabled people; they are playing supporting roles. And they have learning/cognitive disabilities (I think; I hate to guess). So, now, here we are. Two actual cog/learning disabled people versus a pretend SCI, a fake stutterer, and a bunch of people just riding around in chairs for the hell of it. (Who on earth thought this would be a good idea??)

A significant weakness in the disability community as I encounter us are the ways in which we handle invisible disabilities and, in particular, cognitive impairment. We have a hierarchy that mirrors that of the nondisabled world; somehow, secretly, we prioritize impairments, compare them, and treat our people differently on the basis of perceived (or not) impairment. And because we do it, because, to the outside world, this kind of prejudice seems secretly sanctioned among disableds, the nondisableds feel perfectly free to continue their own bad behaviour.

While the glee club members roll, "dance," and sing en masse, a single disabled student tries out for the cheerleading squad. A cognitive impairment, it seems, is better than the fat of many of the other auditioners (cuz what? fat people can't do dance moves? sigh). Alone, the new cheerio struggles against the bullying coach This is fun to watch, right? The dance routine happily celebrates what it imagines disabled people can do; the cheerio stuff shows a disabled person failing again and again, and as she does so, every stereotype about disability, achievement, and merit is reinforced. The studio justifies its own hiring practices; it couldn't possibly have a physically disabled dancer; s/he'd be no better than this person with a cognitive impairment.

And look how one comes to stand in as a metonym for the other: cognitive disability is physical disability's dark and unacceptable core. It is what "we" all fear about disability. This kind of shit is why it can be dangerous when a physically disabled person has to stand up for themselves and their rights by separating themselves from those with cognitive disabilities. All too often, I hear something along the lines of "My brain's OK; it's only my legs that don't work; I'm not a r*d." We separate ourselves and achieve self advocacy to the detriment of others. Even if those words aren't used, the sentiment is often implicit, and it is easily recognized. If the use of cognitive disability in Glee is at all disturbing, it is partly because we recognize prejudice per se and partly because we can see ourselves in the prejudice-filled mirror of the non-disabled tv world. I hate to think what happens next week when the program fills out the storyline with the second disabled supporting character.

So many of the newspaper articles call this episode of Glee a "game-changer." I don't see that immediately. It strikes me most clearly that "Wheels" is an example of lousy script writing, the usual inspirational over-acting, and pathetic choreography. It changes nothing; indeed, it only reinforces the able-bodied world's ideas about disability. The community is taking a stand against casting practices; it has been doing so for a while. We will succeed in having disabled people cast. Note, however, I did not write "we will overcome." Because we will not overcome and cannot triumph until we have made more attempts to heal the divisions within our community. Until that moment occurs, the able-bodied world will always be able to split us apart and reduce our diversity to its stereotypical projections.

Intersectionality

2009-11-12T09:30:00.000-08:00

In a general sense, intersectionality has been an important part of feminist theory; it has enabled rich studies of women's lives across a number of disciplines and brought to the fore new and complex aspects of women's identities. You can read a brief guide to intersectionality here (it's wikipedia so it isn't great, but it works) and read an example of intersectional scholarship by one --no, perhaps, the -- field's founding thinker here.

It has become quite common to talk about intersectional analysis and be talking about quite different intersections: class, race, disability, gender, environment, etc. So, for this post, when I finally get down to detail, I am only going to talk about intersections of internet feminism and disability theory.

When I first encountered intersectional theory and intersectional analyses, I was new to the US and new to the idea that people thought about feminism and race. Pysched by the possibility of intentional rather than imposed identity, I hoped that the differences intersectionality would reveal could add to and perhaps change mainstream feminist theoretical ideas by rendering visible some of the ideas and experiences found in critical race discourses. I hoped that intersectionality would help me find a way to register the differences in experience of the women of colour and women of my social class of origin within the majority white feminist theory that I was reading. (I could have added ableist in that last sentence, but disability wasn't on my radar then.) In other words, I hoped intersectionality would forever end mainstream feminisms' tendency to generalize womens' experiences because it would allow the lives of women of colour and women from lower social classes to matter. I hoped I would see myself.

That last bit never really happened. Nevertheless, within the writings and halls of academia, one might plausibly say that intersectionality has been a successful approach to uncovering and understanding the possibilities of womens' lives. Out here in the wild west of the blogosphere, however, things are all too frequently different: academic feminisms are not quite the same as internet feminisms. Out here, you could say not so much that intersectionality is a failure, but that expressions of internet feminism are all too frequently resistant to the differences of women and that a certain unwillingness to acknowledge and move with difference has lead to much ugliness.

A quick definition of terms. I'm making this one up as I go. But I want to separate internet feminisms from the academic writings that I encountered while at university. Internet feminisms are not so much representative of the scholarly field as a whole, but localized to individual websites and specific groups of people. At first glance, these sites are seemingly able to take on a diversity of perspectives; they have a large audience and multiple contributors. Despite this variation, however, internet feminism is not so much a set of philosophical perspectives, carefully worked out in conversation with other scholars, but a group of outlooks pulled together by friends and people who hold congruent (if not similar/the same) takes on stuff. Each website -- each example of internet feminism -- is thus a projection of the people who run, post on, and read a given site. They are examples -- exemplifications, even -- of feminism but they aren't necessarily reference points to which one can go if you need to understand feminism.

This is an important point. Large websites tend to gain internet authority -- kind of like the way google does page rank. But internet authority does not necessarily mean content authority. The failure of feministing to respond to concerns about ableism (in the most recent blowup) is a good example of this. The larger websites often articulate a mission of giving voice to womens' experience, yes, but there is also often an unwritten assumption that at the bottom of this giving voice commonality will be found. Internet feminisms as found on large websites seem to need community. Internet feminist websites create and then survive on community; community, particularly when there is little to no personal contact, seems to need similarity or commonality. The latter, for reasons I don't fully understand, are threatened by difference.

And so it is that as marked by huge blowups, internet feminisms represented by the largest feminist websites have, in recent years, failed women of colour, men and women from trans communities, and now, mostly recently, they are failing women with disabilities.

That last sentence shouldn't really be a surprise. "My website, my voice" is an effective tactic for small sites like mine, but it is not really a good strategy for sites with multiple contributors and huge readerships. The size of readership really does matter in a weird way. The more people who read your site, the more different people who have an investment in your content, the more people you have a responsibility to. (Note, however, having a smaller site does not relieve you of this obligation, it merely means that your failures are less likely to be noticed and you are less likely to be called on your shit.)

Intersectionality was supposed to mean that your experience was no less important than that of the women on the website miles across the ether. It was supposed to allow some way of creating tissue from invisible techno fibres, some way of embodying all of our complicated selves.

So deal people, deal. Read this now old, but still necessary manifesto/statement for feminist disability studies. Get a sense of the issues from this somewhat more uptodate annotated bibliography. Try this on disability, race, and feminism. Whatever you do, just find a way to hear our concerns about eugenics, abortions, cures, genetic medicine, genetic selection, work, euthanasia, body image, assistance, interdependence, health care, reproduction, sexuality, access, language, .... This is not a win-lose situation. Honestly, what do you have to fear? What harm could come to you and your ideas? Feminism isn't not diminished by reaching out.

dance concert

2009-11-11T20:11:00.001-08:00

It's that time of year again! Leave your cares at home and join us for an evening of old-fashioned holiday cheer.

Friday, December 4th, 8 pm
Saturday, December 5th, 2 pm
Saturday, December 5th, 8 pm

The Holiday Spectacular is a family-friendly performance inspired by the celebrity-hosted Christmas shows of TV's past: Bing Crosby, Andy Williams, etc. Included on the program will be new work by Full Radius Dance company members Jojo Butler, Sarah Kelly Kerr and Onur Topal-Sumer as well as the premiere of artistic director Douglas Scott's Blue Christmas. Blue Christmas takes a look at the emotional and physical entanglements of relationships between families, friends, and lovers. The Von Krapp Family Singers are back, and are Krappier than ever! The campy, joyous vocals of Barry, Mary, Larry, Carrie, Jerry, Harry, Sherry and Shaneekwa Von Krapp are sure to delight audiences.

Tickets are $15 for adults, $12 for seniors and children (12 & under), and just $10 for groups of 10 or more. Group tickets must be purchased in advance. For more information, contact Full Radius Dance at 404 - 724 - 9663 or through our website.

7Stages Theatre

Become a friend of Full Radius Dance!

Sunday, November 22nd @ 6pm

Tickets are still available for our upcoming fundraiser at Nicola's Restaurant. You can support our work and enjoy a great dinner and evening with the dancers for just $25, or purchase your concert ticket at the same time for a discount. Tickets are available in advance only. We rely on your support for our artistic and educational work. We'd love to see you there -- get your tickets now!

Dreaming on Wheels

2009-11-10T14:32:00.000-08:00

I almost never remember my dreams, so the ones that I do remember I tend to think of as being significant somehow.

Last night, I had my "first" dream about me as a disabled person. It was scarily vivid. Law and Order style, I shouted to, well, whomever -- faceless dream person; the police?? -- that I would take care of this "dirtbag." The next sensation I remember was the power and the support of my chair -- so sweet, so responsive -- as I hurled the dirtbag to the floor. They somehow got up again and, apparently, without resistance, because the next thing I remember was that I was hurling them to the ground again. It was a full body over-the-head lift that terminated in a satisfying crunch of bones on concrete. I did it again and again; I was murdering this person, but all I was tuned into was my chair: how sweet, how responsive. My wheels were just the best; I seemed not to care at all for the fact that I was killing someone for no reason that I could see.

Many hours later now, I still remember the feeling of surprise -- me? killing someone? and satisfaction with my wheelchair. Today's NYT has an article about new dream science. Instead of seeing dreams as psychological -- I was expressing my pent up frustration with the world or something like that -- a psychiatrist is offering a physiological interpretation.

In a paper published last month in the journal Nature Reviews Neuroscience, Dr. J. Allan Hobson, a psychiatrist and longtime sleep researcher at Harvard, argues that the main function of rapid-eye-movement sleep, or REM, when most dreaming occurs, is physiological. The brain is warming its circuits, anticipating the sights and sounds and emotions of waking.

“It helps explain a lot of things, like why people forget so many dreams,” Dr. Hobson said in an interview. “It’s like jogging; the body doesn’t remember every step, but it knows it has exercised. It has been tuned up. It’s the same idea here: dreams are tuning the mind for conscious awareness.”

What does it say that my first disabled dream has me happily committing murder? Is it really tuning my brain up for the day? Who will I hurl to the ground? Or should I be looking for a more psychological read? Have I accepted myself? Am I a fighter for law, order, and appropriate citizenship? What is going on?

I am happy to report that I have made it through the day without murdering anyone -- though I still find my chair sweet. Hope tomorrow has a less violent start.

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.