Wheelchair Dancer

Ironside III: Criminal Minds, Luther

2013-10-08T15:53:00.002-07:00

So, did you watch it? This is part III of a series of Ironside posts. Here is part I and here part II.

I like Luther. To my mind, it is one of a very few programs that center on a male character of African descent without either pathologizing him or writing him into a series of polarized (violent or noble/long-suffering, but dignified) stereotypes. The main character is complicated, yes. And like many other cop shows, the drama arises from a series of questionable decisions with respect to the law and policing practice. The thing is, though, that most of these decisions are narratively driven -- that is, they are both event/plot focused and directly tied to psychological character/personality. They are not connected to elements external to the series. And by that, I mean that they are not about someone's (inaccurate) imaginings of what it means to be a black man.

I wish the Ironside team had taken a leaf from the Luther script book: Race matters. And because race matters in the ways that it does, disability in Ironside becomes doubly significant.

We are, mostly from film, accustomed to seeing successful African-American actors take lead action roles, but I am hard pressed to think of a successful network primetime show that has cast a (male) African American actor in the lead. [Yes, Scandal, always. But Scandal is very centered in a particular woman's/women's world.]

Do you remember Criminal Minds: Suspect Behavior? It was an unsuccessful spin-off: anchored by Forest Whitaker, poorly conceptualized, weakly written, and justly cancelled after one season. I admit to having watched the show regularly. I found myself considering the characterization of the primary character, Sam Cooper. As I contrasted Cooper with the depiction of the impulsive, quick to anger, less controlled and still gentle, caring Derek Morgan (played by Shemar Moore on the original Criminal Minds), I came to think that Cooper's sadness was intended to counterbalance conventional stereotypes of black men and counteract a mainstream audience's understanding of roles appropriate for black men.

So many of the lead cops in these kinds of programs are what I call "good renegades." They bend a couple of rules here and there; they are strong, sometimes angry, always action-oriented, bad-good boys. Given the way our culture understands race, I think the script writing/visioning team thought it was impossible for the show to be successful on the networks if they cast a black male lead who has these characteristics. So, they characterized Cooper differently: Cooper was rule-driven, saddened by the pressure of and for success, pained by the crimes before him and quietly hurt by whatever burdens his history laid upon him. In other words, Cooper was to be seen as deeply empathetic.

I'm pained by a reality in which I find myself saying some version of "it is novel for lead black characters in this genre to be seen as feeling," but it is nonetheless an important statement. Derek Morgan cannot lead the BAU full time; Sam Cooper can and does. Or at least, he might have been able to had the writing of the show been better. (I do not want to believe that people did not watch simply because the lead was an African-American man.)

Luther, by contrast, ran three seasons and is on its way to becoming a film. Instead of watching Luther, I get the sense that the Ironside writers watched and modeled their primary character after Suspect Behavior. Mainstream American television audiences are different from those in the UK; race is different in the US, too. Suspect Behavior might well have seemed a better model. But instead of relying on emotional characterization, the Ironside team took disability as their crutch. Spinal cord injury is not a physical reality in this show; it's a metaphor that washes away mainstream fear about the cocky, outspoken, and successful black man.

If we see disability as a metaphor that governs (might one say "overcomes"?) racial stereotype and not a reality potentially lived by all of us regardless of race and ethnicity, we can make better sense of the opening episodes' two most important scenes: the opening, the flashback in which Ironside dangles a suspect hanging off the roof, and the transition/insight moment when Ironside breaks the case while processing his anger about the disabling shooting.

Both Luther and Ironside dangle suspects in their opening episodes. Unseen, Luther lets his fall to the death -- deliberately (though an inquiry later finds him not guilty). It's a deeply shocking moment that hangs over the rest of the programme. The central character has committed murder minutes into the first episode; when will he be discovered and how? What will be the consequences of this act? You never quite lose sight of this drama, tied as it intimately is to the personality of Luther. Each time this incident comes up, the viewer is asked to see Luther as someone so deeply principled that he can err -- grievously -- for the right cause. This and other errors combine to reveal a character so vulnerable, so powerful and so interesting that his psychological makeup is not easily tied to common perceptions of race.

Within five minutes of the opening, Ironside is shown in a flashback to his non-disabled state. His partner bashes the suspect with a railroad tie, Ironside dangles him off the roof, and both laugh and talk as they do so. The suspect does not fall. Theoretically, this should make Ironside the "better" cop -- the more "human" cop -- but it does not work that way. The show opens with Ironside hitting a suspect who has been dragged into a car; he gives the suspect a knife and dares the suspect to stab him; the suspect breaks down -- stabbing a disabled person, angry or not, is too much. It's as if the writers want to say Ironside was a tough rule-breaker before the accident; he is a tough rule-breaker after the accident. Like other television detectives, he gets to beat up suspects; here, however, the violence is a means of showing he is still "effective," still one of the team, more than up to the job.

The valence of these transgressions is different. Now that Ironside is disabled, the power dynamic of "officer/suspect" has changed. Power is all too often seen as a function of physical strength. Disabled people are supposed to be weak, physically and figuratively; they are in this scenario powerless. Thus though Ironside wears a badge, we viewers are supposed to assume that power resides with the suspect. We are supposed to admire the bravery of a disabled man who hits a non-cuffed suspect, offers him a knife, and dares him to use it. In the midst of this sappy stereotyping, the fact that the officer assaults the suspect is lost. Ironside is "bad-ass" (a favourite media word for the show), because he has a bad ass.

Disability challenges the viewer to reinterpret the meaning of, well, everything. Also lost in the stereotyping above is an understanding of what might motivate a disabled man to take such extreme risks with his life and body. In television series, those who have such an outsize liking for risk are treated as if they were either depressed, angry, or both. So, yes. Let’s talk about those things -- because, for television, the transition into disablement can only bring an irresolvable depression and/or anger. (Not that these don’t happen; they just don’t seem to happen the ways television thinks.)

To the non-disabled world, it makes sense for Ironside to be as angry as he occasionally is: that’s the pain of disablement speaking. It makes him non-threatening; it counterbalances those stereotypes of angry black men. For the non-disabled world of television, Ironside's anger at his disability is inspirational, so inspirational that it enables Ironside's crime-solving insights: this is why the angry boxing scene is critical.

It had to be boxing, of course, basketball or any other sport -- certainly not football -- would not do. Ironside is shown coaching ice-hockey, but boxing is significant. It's where black men in television go to work out their anger, to be found, to be offered discipline, focus, and a way out of their circumstances. Regardless of the actual reality, boxing in television has a metaphorical purpose. As Ironside punches his anger out, Tech N9ne's lyrics blare, miscontextualized. The song is in part about drugs and in part about inner personality demons. In the show, it's about the anger, the rage at the disability and the shooting. And suddenly, as Ironside pushes his wheelchair into his wall -- literally hitting the figurative brick wall -- he breaks his case.

In my last post about the series, I am going to write about how the understanding of disability as a function and not a reality affects the language in which Hollywood and mainstream reporters discuss the show. If you understand disability as a figure or metaphor, how can you cast disabled actors? In particular, I will be looking at how the figurative understanding and the casting of Mr. Underwood continue the discussion of what one reporter calls "color-blind" casting.

Scene From Today

2013-09-23T19:33:00.002-07:00

I ought to start a series called "F*kwits Today." But I have enough on my hands. So, while I am still thinking about Ironside, here's one for today.

Me: Could you pull a cardboard box from the back, please. I'd like to buy 7 bags of ice and put them in there.

Him (utter incomprehension): What?

Me (slower): I would like 7 bags of ice. It would be really helpful if you could pull a cardboard box from the back, so I can carry them home.

Him: Lady, you can't carry them.

Me: That's what the box is for.

Him: I can't sell you them; you can't carry them.

Me: I will put them in the box.

Him: How are you going to carry them.

Me: In the box.

Him: I can't let you do that.

Me (frustrated): unprintable.

He gets two boxes. Now, I *know* I can't carry that. He puts 3 bags in one. I repack them and then transfer them from the second. Eventually, I have all seven in the box and the box is on my knees.

Him (gushing): I've never seen that before. I've never seen that before!

Me (resigned): unprintable.

Pushing Yourself I

2013-09-19T10:20:00.001-07:00

Lest you think this is all Ironside, all the time ... something different. As I was writing the paragraph on "pushing yourself" in the previous post, I realized that I had to spend more time with the concept. I thought it would be a short post -- an Ironside interlude. As it turns out, "pushing yourself" is probably a two part series: the personal and political/cultural.

Pushing yourself is, on the whole, intended to be a good thing. It's one of those casual phrases that we hear in news reports, in professional evaluations, common conversations. Sometimes, it's a personal goal -- to push yourself to do better, more. Funny how you don't usually push yourself to do less -- even though that might be more work. You can push yourself to work out more, run faster or further. To be successful, you have to push yourself,

... because no one is going to do it for you.
... to your limit.
You will never know your limits unless you ... to them.
Keep calm and ....
... and make it happen.

We have created a society that believes success is created from within and that you, alone, are responsible for your success.

I'm realizing how insidious these quietly accepted motivationals are -- to disability community in general and to wheelchair users in particular. The mind doesn't always keep things separate. Under the guise of processing or remembering, our brains sift, sort, and smoothen; one thing slides softly into another, and before we know it, sententious external motivators become prescriptions about the best way to live and move in the world. That which once was figurative becomes painfully literal. Every physical therapist, doctor, friend who has urged me to push myself has meant it literally and figuratively. Now, the phrase is no longer neutral.

I am perhaps inordinately proud of my ability to push myself. In the years that I have been a wheelchair user, I have seen my strength and stamina grow; my skill set has increased. I now move easily through the world with what I hope is a powerful and yet fluid stroke. I remember how tired I would get pushing from our apartment to the nearest accessible subway; how I was unable to complete even the tiniest of hills in San Francisco. Some days, I was defeated by the slope of the pavement. Now, with the exception of the hills in San Francisco, these things are at worst pains in the proverbial.

I enjoy the feeling of pushing myself. There's a reassuring rhythm to the cycle of breath, body, shoulder, hand, and wheel. I count pushes; I consciously lengthen my stroke, let my hands fly off the wheel, and stretch into the release at the end of the stroke. I play with inhaling and exhaling on the push. I love the rise through my spine and the deep connectedness to the ground. Even the scurry across the street can be fun. Wheeling is a physical pleasure.

Several times in my wheeled life, I have lost the ability to push myself. Shoulder injuries. Always from dancing, aggravated by hypermobility and wear and tear. The combination of these things scares me. All manual wheelchair users end up with wrecked shoulders -- the body is not designed to locomote in this way. My shoulders are at extra risk given their daily load and their flexibility. And when they are gone, I will mourn the loss of this particular physicality. Then like all the other manual wheelchair users, I will hop in my power chair and/or ask to be pushed.

To be sure, some of my fear around this transition is environmental. I won't be able to throw my chair in my hatchback, hop high curbs, easily maneuver the gap between train, platform, and wall, take the escalator, or, among other things, bump down stairs. And so what? This is true for so many of my friends; they live their lives. I will as well. There's no need for me to think of the transition as anything more than a neutral change. But I do, because I hear in the back of my head all those voices that have told me to push myself.

I've written here of my personal fears, but disability is both political and personal. The things that scare me are personal, but they are situated in policy, history and culture. How I move through the world -- self-pushed, pushed by someone else, or by power chair -- is open for interpretation. That interpretation is a consequence of how our culture handles disability. Independence is important for people with disabilities. The people in our civil rights movement fought and continue to struggle for the right to live independently -- outside the institution -- and interdependently in the community.

Whether we can succeed is often wrongly judged by how much people think we can do on our own. This is world of money and judgment is part of the culture in which I locomote self- or partner- propelled. More on that in the next post.

Dancing Your Self

2013-09-18T22:03:00.002-07:00

I've been thinking about this piece for several days. It's a meditation on writing and language by Costica Bradatan for the New York Times.

[A] writer’s language, far from being a mere means of expression, is above all a mode of subjective existence and a way of experiencing the world. She needs the language not just to describe things, but to see them. The world reveals itself in a certain manner to the Japanese writer, and in quite another to the one who writes in Finnish. A writer’s language is not just something she uses, but a constitutive part of what she is. This is why to abandon your native tongue and to adopt another is to dismantle yourself, piece by piece, and then to put yourself together again, in a different form.

This rings so true for me. I know the feeling of sliding from one language to another and recognize how certain experiences and feelings are encoded, constituted by the language I was living in at the time. I've tried several times to describe them to someone else, but I usually fail -- not just because I cannot find a precise word, but because words are only the outer manifestations of our experiences and inner selves. I can use the word that the dictionary gives me, but that does not tell my listener why or how I felt in the context of what I was living at the time. It doesn't tell the listener what the word means in the cultural and semantic space of the language I was living in at the time. A word for word translation doesn't communicate the embodiment of the idea. Saying "thank you" in English is very different from saying "thank you" in Japanese -- in part because of the physicalities of being thankful are distinct.

In these senses of language and vocabulary, dancers have the chance to remake ourselves frequently. While we have senses of ourselves as movers -- signature moves, idiosyncratic tendencies, identifying qualities -- we also expect choreographers to take our bodies and selves and use them.

As a dancer, I get the chance to remake myself every time I begin a new choreographic process.

It's something about the opportunity to abandon my familiar movement practices. It's about the openness and the asking to be seen or recognized by the choreographer. It's about the trust you place in your dance colleagues. It's about knowing that the inner self can always be reshaped and remade. It's about my faith and optimism in the new, and my deep belief in the body.

Ironside II: The Rough Rider Condom Chair

2013-09-17T10:41:00.002-07:00

My almost favourite character in the show is Ironside's chair. I stress the almost because the character of the chair connects to my next set of issues with the program.

The production team -- and hence also the media team -- have done a lot of work around choosing a wheelchair. Instead of showing the primary character in an old E&J hospital style chair or even the Glee style Quickie alternative, Ironside uses what looks to me like one of Ralf Hotchkiss's creations -- the RoughRider from Whirlwind Wheelchairs.

Whirlwind makes beautiful chairs that are designed to survive environments tougher than North America. They are unusual in their long front end design, with the large foot rests and dedicated plates for each foot. They also have really responsive front casters; sturdy is key.

Given how important the chair is, I'm am surprised no one is actually acknowledging the brand of chair and its design. I don't think the chairs are easily accessible in mainstream distribution in the United States. I imagine you can request one, but I don't know anyone who uses one as their primary chair -- except Ralf. So, they had to work to find the chair. And since the distinction between this set of wheels and the average television chair is critical to the character of Ironside, they should have been clear about its origin. Whirlwind is doing good stuff; they could use the brand recognition and support.

On set, the chair plays a role in the series' exposition of disability, sexuality, and masculinity. Yes, the chair is all about the sex. [I feel as if I should say it again, louder.] The chair is all about the SEX!

Independence: The American Way

I have long been frustrated by the representation of wheelchair use on television. All too many of the non-disabled wheelchair users seem to labor under the delusion that chair handles and being pushed are the best way to communicate their "disablement." They seem to be caught in a self-reinforcing misunderstanding of what disability is and what it means. To be disabled in a wheelchair-using kind of way must be an experience of utter helplessness; the best way to signal that is to show the person being pushed around; being pushed around means that wheelchair users must be weak and dependent on others; therefore, being disabled is an experience of utter helplessness.

With Ironside, television has apparently discovered that wheelchairs can come without handles and that the absence of handles means that people push themselves around. That may not seem like much to you, but the fact that Blair Underwood will self-locomote is critical to the ethos of the new Ironside.

Sadly, the mere fact of self-propulsion does not mean that the show escapes the old way of thinking. Rather, it reinforces the old ideas, because self-locomotion is immediately treated as akin to "independence." And independence is what makes the show, according to David Bryant, a disabled technical advisor, "bad-ass" [here]. You can google Mr. Bryant to get the details on his disability story. All I can say is being disabled doesn't necessarily mean that you understand and are committed to the nuances of the movement.

In a Think Progress interview on how technical advisers help television programmes get it right (?!), Alyssa Rosenberg shows Mr. Underwood learning from his advisor:

“Before we shot the pilot we spent many, many hours together just kind of doing what he does, going out in public. He [Bryant] said, ‘Just take the chair and go around your neighborhood, and go out.’

We’d go out to dinner and everything, and spend a lot time. The first thing I noticed was there were no handles on his wheelchair. And I said, ‘Dude, why don’t you have handles on your wheelchair, man?’

He said, ‘Why would I want to? Why would I want somebody to help me out? I’m independent–whatever I can do for myself, I’m going to do for myself.’ So the first thing we did was cut the handles off the wheelchair.”

Funnily enough, Mr. Underwood seems to face no environmental barriers -- where did he go, I wonder? -- his experience is only about personal independence. Let me be clear. Being able to push yourself does not make you independent. Not even being able to complete all of your activities of daily living without assistance makes you independent. Equally, accepting help does not make you dependent.

Indeed, self-locomotion might only mean independence if I were able to move through the world without encountering any barriers, environmental or social. And if I could do all that without having to once refer, depend on, use the work of those who came before me and who are beside me. If all this were true, well then, perhaps I could be independent. But the reality is that while my ability to push myself is physical (and contingent), my ability to go down the street depends on the people who designed my chair, who made usable chairs, who removed environmental barriers, who changed social attitudes and so forth. A physical capacity does not independence make.

And what if I were to accept help with, say, dressing -- even if I were technically able to do it by myself? What if I were to accept help with cleaning my house, parenting, or shopping? Significant numbers of people watching the show will have lives in which they are "assisted" in some way. It's less about actual independence -- no one is independent -- than the kinds of work and assistance we value and the kinds we stigmatize. Independence as interpreted by Mr. Bryant and Mr. Underwood is a myth. It is a false fiction that serves to isolate disabled people from the community as a whole.

Mia Mingus's articulation of how disability community and justice are tied to interdependence not independence is beautiful. Read it here.

Oh! While I am at it. It is wholly unacceptable that this so called physical independence, "bad-ass"ness, is also expressed as disability superiority. When Ironside calls his partner an "emotional cripple" and tell him to get his "loony-bin" ticket out of the force, he repeats all of the stereotypes about physical disabilities being the only real disabilities. The potential for social and cultural harm here is huge. Further, propagating intra-disability prejudice is hardly the way to build support for a television show from members of the disability community as a whole.

Disability, Sexuality, and Masculinity: Independence Gets You The Girl

The show is careful to emphasize that Ironside lives alone -- independently even. Like all the other major television show detectives, he is prone to "going it alone," getting the case-breaking insight alone, doing it all on his own, wandering off on his own, etc. He's a maverick and rebel. As in other television shows where the solitary man, detective, cowboy, whatever gets a woman who is drawn to that aloneness/independence, Ironside gets his turn. It's not just in disability-related shows that independence signifies successful adherence to the Hollywood code of masculinity. In disability shows, however, the sex and independence combination carries extra freight, most of which is born by Ironside's chair.

Ironside goes there. We see a couple of seconds of what might become sex in the chair. To be honest, the chair performs well! The woman leaps into Ironside's lap, is flipped somewhat to the side, faces him and straddles. During all this time, the chair looks good. Stable. Firm. Responsive. Quite the studly base for any encounter: one of the advantages of the long front end. Consummation is interrupted by the narrative demands of the case, though the woman returns, full of promise, at the end of the episode. The chair that gives Ironside his independence is both platform for and symbol of his sexuality. It's no coincidence that Ironside uses a Rough Rider chair. The play on the hyper-masculine brand of condom is right there.

I suppose sex was inevitable. Mr. Underwood seems to have learned that everyone with spinal cord injury is different and that sex with spinal cord injury is possible. This being television though, the fact of disabled sexuality cannot be left alone. Ironside doesn't just have sex; he has Murderball sex, i.e, sex for disabled men with able-bodied women. In the masculine, athletic, independent and, yes, rough-rider world, disabled women are not desirable sexual partners. Only able-bodied women can signal that no masculinity is lost in disability. Does the RoughRider chair brand make sense? Yes, it does.

The Los Angeles Times has a short piece by Greg Braxton that nails it: "Said Underwood, 'Every spinal cord injury is different.' He referenced the documentary Murderball, about quadriplegic athletes who play wheelchair rugby. 'Everyone in that movie has an able-bodied girlfriend.'" That's not technically true; I believe there is one example of a disabled man and woman together. But it is certainly true enough. The prevalence of (mostly white), aggressive, athletic men with their blonde able-bodied girlfriends stands out in that film.

The message is clear: These men can still get the societally desirable girl despite their disability. Despite their disability, they have not lost any of their masculinity. They are to be seen in the same ways that we see any of our athletes: as prime examples of desirable men. The fact that Ironside here continues years' worth of prejudice by stereotyping disabled women as "not good enough" seems not to matter.

I know where this awful stuff is coming from. That is, I am familiar with the stereotypes that are at question here. I know why there is such an emphasis on masculinity and sexuality. I know that this junk is responding to a set of incorrect thinkings that go something like this.

Society will tell you that disability represents a loss of masculinity. Once you hit that wheelchair, things change: You lose your autonomy and place in the world. People treat you as if/you come to feel as if you are powerless, weak, helpless, etc. This act of rendering someone thus powerless is named/experienced as either infantilization or feminization. Reclaiming your adult, read heterosexual, masculinity is thus essential to reclaiming your self.

I'm going to rewrite that last sentence. Reclaiming the things that society says makes you masculine is thus essential to reclaiming your self. The "society says" part is critical. Because gender does not come in simple masculine and feminine binaries. Because there's no reason that a disability experience has to be expressed as a gender experience. Because there's no reason for making disabled and infantile similar things.

These perspectives have a long and complicated history in our culture; they need to be unwound carefully and at length. Riding the horse of conventional heterosexual masculinity is not the way out of the situation; it just reconfirms the initial problematic framework. Being seen to get it on in this way does not a man make or indicate, regardless of disability status. [And oh, the horrible irony of this thinking being confirmed by a film about disabled men.]

Are these perspectives too complicated for primetime television? I hope not. But I am beginning to think that the public does not want to understand disability and that Hollywood chooses not to lead. After all, the feel good of Ironside is Underwood's race. They've cast a black man in a title role, a role that formerly was held by a white man. Then, they disabled him. What do disability and race mean in this show? That's for the next post.

Ironside I: The Non-Disabled Role/Roll Again

2013-09-16T08:38:00.000-07:00

A non-disabled actor is taking on the role of a wheelchair user. I know. It's still so common that this particular instance is not really a shocking headline. But NBC's remake of Ironside does bear some discussion: because the main character, acted by Blair Underwood, is African-American; because there is so much PR about the casting decision; because that PR keeps stressing that Mr. Underwood has a personal connection to disability; and because of the ways the series uses and understands the disability community.

That's a lot to handle in one post, so I am going to create my own Ironside mini-series. The first episode will be about Hollywood, disability, and casting. The second will be about Ironside's wheelchair! Yes, the chair is one of the most important characters in the show; it connects us to the series' discussion of sexuality and masculinity. The third will respond to the media culture created around the show. In the fourth, I will look at some of the intersections of disability and race.

Casting: The Flashbacks

The conventional reason for not casting disabled actors is that the story lines require significant flashbacks to the characters' non-disabled state. Though I've seen some debate about blindness, the impairment most often in question is spinal cord injury with paralysis. Wheelchair use is the shorthand for disability, so wheelchair use is the case most often in play. For most film and television producers, a wheelchair user cannot walk, so he or she cannot play that part. This is a limited understanding of wheelchair use -- some wheelchair users can walk, not every wheelchair user has paralysis, and some people with paralysis can walk. But since I cannot imagine getting that into the average producer's head, let's begin with non-walking wheelchair users with paralysis.

The excuse is that actors with this kind of embodiment cannot fulfill a significant part of the role, so they cannot be cast. A typical example of the explanation can be found in this piece in The Wrap by Tim Molloy: "The producers said the show is about 10 percent flashbacks, which would have made it impossible to use special effects to make a paraplegic actor appear to walk." All right, then. So, why can't they use a stunt or body double? Oh my! What if Hollywood were to think of walking as a stunt. Not that I think of Hollywood as needing money, but this has to be cheaper than filming car crashes, explosions and other such routine stunts. Can you imagine?

Let's just take that thought seriously for a second. Body doubles are used for all kinds of things -- dangerous stunts, sex scenes -- why not walking? NBC is already paying Horace Knight to act as a stunt double for Blair Underwood .... Why couldn't they just have a walking double for a disabled actor? ABC hired a disabled body double for Arizona, Jessica Capshaw's character on Grey's Anatomy and proceeded to develop a position for ongoing and complicated work. Arizona seems not to have been written out of the series, and she isn't staying at home in a single position with a blanket over her leg. To keep Arizona's character the same, ABC has had to commit to and invest in a body double. If you can use a double to make an actor appear disabled, surely the reverse is also possible?

In the course of the show, we learn, from Stacy Jenel Smith for the AARP, that:

Underwood has worked hard to master his wheelchair technique. He’s endured tumbling over. He’s learning how to pop wheelies. After being shot — as we see in the pilot’s flashbacks – Ironside, he pointed out, had to learn “how to drive, how to get in and out of his car, which is a big deal, how to get in and out of bed, how to work out. He had to learn his center of balance. He’s paralyzed from the armpits down, so he’s a little different from [the previous] Ironside, who was from paralyzed from the waist down.”

I get the feeling that Mr. Underwood and Ms. Smith want the reader to see how hard it is to act disabled. Having to endure tumbling over? Laughable. But this laundry list is both helpful and familiar. Underwood has had to learn how to do the activities of daily living as a wheelchair user. We are so accustomed to non-disabled people learning how to act disabled that it is now fairly easy to do. But what if the reverse were also true? A similar list could be drawn up for the walking body double. We will need to know how to create shots of you standing, reaching, walking, running, .... We have broken down what we think we need to know to make someone seem disabled. How hard would it be to break down what we think we need to know to make someone seem able-bodied?

But We Need That Back Story

Time and time again, producers emphasize the importance of the non-disabled state. I've only seen the first episode of Ironside, so it is too early to tell whether other episode story arcs are going to depend on incidents that happened prior to the shooting. But usually, people are only talking about needing to go back to the moment of disablement.

Sure enough, the first episode of Ironside does feature flashbacks. We see the setup for the arrest that goes wrong. We see the surveillance, the running, the shooting and the falling. But how long can this go on? I mean, how many times during a series do we have to experience the story of the "tragedy" of Ironside becoming disabled. Surely, once we know and we've seen his partner's grief, we know. How much interest in this backstory is there?

In part, the blame lies with our societal fascination with the transition into disability. We love the dramatic stories of accident, tragedy, loss, and ensuing helplessness or supercrip overcomingness. This is television -- we know how this plays out. And so it is in Ironside. Tech N9ne's Demons plays throughout that scene as Underwood works out and punchballs his anger; he then slaps and punches his legs. Finally, he crashes his wheelchair into the wall in frustration -- and this gives him the insight that breaks the case. Yawn.

It is true that plenty of us acquire disability; I did. But the Hollywood approach to that moment does not capture most of our experiences. We all have to negotiate the transition, yes, but for the most part we don't handle it in these ways. Even if you grant mainstream culture some interest in the transition, this isn't the whole story.

Further, there is a completely different side to the disability experience that we almost never see on primetime. Beside those of us who acquire disability are those of us who are born disabled. Where are their stories? I want disability to be more than incidental -- you know? It's nice that Breaking Bad cast R.J. Mitte, but I want more. I want disability to be visible as the "normal" part of human variation that it is. I also want to see disability as it is experienced by many of us: integrated into a rich history and culture. Mainstream television could be a leader here; it could be a purveyor of our work. Instead, Hollywood consumes and regurgitates simple, useless stereotypes.

His Mother Is Disabled

In almost every piece I have read, Mr. Underwood's mother is mentioned -- never by name, but always by diagnosis and means of locomotion: she has multiple sclerosis and uses a wheelchair. This is wrong on so many fronts. She is a person in her own right; she has a name; she might have liked her diagnosis to remain private. She might liked her wheelchair use to remain private.

We don't know of course, because the press has blared her story all over her son's success at landing this role. Every mention of her disability is used in support for the rightness of the casting decision: Mr. Underwood may not be disabled, but his mother uses a wheelchair; this makes it all right. Ms. Underwood's disability is leveraged to argue that Mr. Underwood has special insight into the life of a wheelchair user.

I encounter this kind of illogical reasoning often, and I still fail to see why or how it works. Knowing someone does not mean that you have access to knowing what it means or is like to be them. We acknowledge this all the time. It's one thing to know about an issue; it's another thing to be affected directly by it. Unless, that issue is disability. So, let me be clear: Mr. Underwood may see how his mother moves through the world, but that is not the same as knowing what it is like. Nor, critically, is it the same as being able to take it into his body. Mr. Underwood does not have a body that requires the use of a wheelchair. He cannot know what it is like, and from what I can see of the show he does not get it.

Under the headline that Ms. Underwood is proud of Mr. Underwood in his new role, one story quotes Mr. Underwood as saying: "She was very moved when she saw me like that. It has opened up many conversations we never had before." Like that? That? No, he doesn't get it. It took this preposterous fakery for Mr. Underwood to deeply engage with his mother about her experience? For shame.

Does He Do It Right?

After saying that Mr. Underwood cannot know what it is like, I'm willing to bet that many of you are interested in seeing how well Mr. Underwood does disabled. Is he better than, say, Kevin McHale? I say that these are pointless and wrong-headed questions. Who cares whether Underwood can fake paralyzed legs better than McHale -- strap vs. oddly positioned legs? Who cares whether Underwood looks more disabled or behaves more like a disabled person than McHale?

If you are looking here, you are looking from the perspective of a society that thinks it can assess disability and disablement by visual inspection. You are acting as if you think you know how disabled people live and move in the world. Disability and disabled people come in all ways, shapes, forms, and habits. There is no one, right way to be disabled.

Television shows like this narrow the experience to their imaginings about our embodiments. We do not have to and should not take them on as definitive.

After Surgery

2013-09-15T11:00:00.000-07:00

On Friday 13, I had a small surgery. I'm not superstitious, no.

My last memories are of the surgeon telling the anaesthesiologist that she likes to get a 'insert name of painkilling medicine' on board before she starts. "Good plan," I commented. Realizing that I had understood this (duh!), she turned around and said that usually people talk about something "nice" at this point. She began a new conversation, waving her arm wildly at the anaesthesiologist. She said she had seen my picture in the paper, cut out the article and put it in my file. I laughed about that performance and mentioned that the critic had sat in the front row with his notebook. We had responded by dancing really close to him and by being as obnoxious as he ... I don't recall if I finished the sentence aloud.

My first memories are of the surgeon pulling my arm and of her voice urgently, it seemed, telling me about the overall success of the surgery and that it wasn't the surgery we had planned. She told me why she had changed course, and I remember having difficulty focusing on her rationale. Did she wake me? Had I woken before such that people knew it would be OK to give me all the information and that I would remember it and understand?

My second memory is of me staring around and of a voice informing another voice about how much I had peed: critical information that.

After that, I remember some blanket-wrapped bodies lined up in the recovery room. Then, there was the bumpy transport back to the short stay unit. We came down the corridor and passed by the waiting room. On the way in that morning, I had seen several people wheeled through in their hazy post-surgery state; I thought that this moment should have been private. When my turn came, however, I was glad everything was so public. I immediately saw the Wizard, sunk deeply into a device. Several times, I called his name -- no response. The person pushing joined in, and he looked up. I was so happy to see him and to hold his hand. Even though the medical staff had been great, the feel of his familiar hand is more than I can describe.

We've done the surgery thing several times now; we've got the teamwork down. We know how to advocate for each other, but I also know that practice does not, in this case, make perfect. Even the littlest of surgeries (as this was) are hard for the person waiting. And waiting. And sitting with all that fear. And waiting. The person having the surgery cruises through on happy drugs.

I remember the Wizard stepping in through all the history-giving and chart filling out. He reminded me of things I had forgotten, stressing the importance of others. I also remember him sitting by my bed checking all the monitors and devices. I checked out because I knew he was watching over me. Then, he was finding water. More water. And still more water. He cheerfully listened to all the nonsense (that, funnily enough I don't remember). And I remember him smiling when I announced that the happy phase had passed. I remember, too, the way we crawled up our windy hill at 13 mph, pulling over for cars who weirdly wanted to go more quickly. Wizard has a lead foot, so this was extraordinarily hard; we'd round a bend and all of a sudden, we'd be going 19 mph.

There are always a couple of hiccups that are disability-related, as opposed to consequences of surgery. We're handling them. Weirdly, there's almost no pain. Well: that's only true as long as I don't try to move quickly, twist, or bend completely to pick something up. Certainly, though, there's less pain than I expected. Unlike previous times, where I threw up for days, I have had very little nausea and only a few moments of dizziness and light-headedness. I'm breathing into that silly spirometer, my pride a little dented: I'm an athlete. Certainly, I can do better? Surely, I have awesome lung capacity?

Wizard's got this covered. My favourite foods are in the house. I anticipate much sleep and many hours of Mi-5/Spooks (yes! again! more!). The house is amazing. It's so peaceful here. From my window, I'm watching the deer and listening intensely to the silence. I thought the marine layer might reduce the general risk of fire, but it's still desert season here. For the moment, I'm resting in the oasis we created. It's a welcome break from the city. Call it an interlude, intermission or even an entr'acte. I'm supported by the inner and outer environments. I'm safe. I've returned from that strange surgery world. The freshness of autumn is in the air -- brisk, clean, clarified, and open. I'm OK. And for that, I'm deeply grateful.

Dislocations: Death, Transitions, and Hiatus

2013-09-14T13:54:00.001-07:00

Sorry for the hiatus; I'm back now. As you might have guessed from the series of #Dislocations posts, things have been happening: a family member transitioned from this life to ....

After a death, there seems to be so much to do: all the keeping track, the details, and the expectations. Then, there's feelings you have, plus the emotions experienced across a newly-created, but fleeting community of loss. And after that? Well, after that are memories and the question of legacy.

To me, living in and with legacy is not just about memory. When I think about how I would like to be remembered, I think about how the people who knew me will recall me, once in a while, in their heads. I think about how my presence will occasionally be felt -- even though I will be unseeable and untouchable. I think about what people will say: things I did, things I said. There will be good and bad; I know that I will have lived a "good life," but I also know that I will leave behind sore spots: the unresolved pain I have caused. That pain will be part of what some people remember. I think about fleeting images, the times they will hear my voice in their head, the occasional smell that formerly was my scent.

I call this memory. And I distinguish memory from legacy. Memory seems private. Memories do not usually grow; instead, they deepen as we remember more, change a little, and forget some. Memories can be altered; they are deceptive, personal, and often true only to and for the person who remembers. Occasionally, memories spur action: I have friends who say that the memory of "x" caused them to make a certain change in their lives. But for the most part, I think memory of as quiet and personal; it's the reflection of a bond that has been irrevocably changed.

Legacy, I think, operates differently. Memory is for people who knew the dead. Legacy is not necessarily so. I think of legacy as the structural and public expression of memory, plus a creation of desired memory. And that's the interesting part: the gap between the person who was and the person we as legacy-stewards create. I think of how a dead person continues to affect the lives of the living and also of the structures we put in place to make that possible.

In many ways, legacy can be programmatic. Some programmes fulfil the known wishes of the person who has died; some express what we think we knew; some articulate only what we wish were true. Some legacies are artistic and experiential. They create spaces in and with which others dwell. Some legacies are more than a park bench or building tile. They are what these things represent --legacy as the tender and hopefully, but impossibly neutral expression of social power and cultural capital. Legacy is riskier than memory; it reaches deep into our communities and touches the lives of people who did not know the dead.

I think we have a responsibility to decide carefully about legacy. I don't see legacy as a given, it's a choice. Do we create legacy or do we let the person live purely in memory? If we do, how do we create legacy without recreating the oppressive structures of charity? How do we create a legacy that is not about making us, the bereaved, feel good? In other words, for whom is this legacy? What would the person being "legacied" think about their representation? Would they even recognize themselves?

Once all the "thank you for coming" cards have been written (?! -- another one of those moments where manners matter). When all the arrangements have happened. If the mourning and grief are manageable. Now, the work begins.

Dislocations: Manners

2013-08-15T15:30:00.001-07:00

I am learning how much the distinction between manners and etiquette matters and where it can be detected. On the whole, I would say that I have decent manners. I know enough and practice most of the common courtesies that make being around each other easier. I will greet you, eat in the appropriate manner, practice daily hygiene, dress appropriately, and treat you with respect. Usually, I manage not to have my mobile phone on at the wrong times; I even manage to leave the bathroom in a decent state.
But. And of course this is the key. But.

Manners, especially common manners, are not the same as etiquette. It's an important distinction. To me at least, manners are the graces -- the things we do with and for each other: the little and big acts, the what. How and when we do those whats and the skill/knowledge to deploy them are, as far as I am concerned, questions of etiquette. Both manners and etiquette vary, and both manners and etiquette are subjective -- meaning that there is usually no scientific or factual reason that things are the way they are and that people behave the way they do. These are all issues of culture. [In explaining the difference, I've often heard people use belching after a meal as an example. In some cultures, it's a sign of respect and appreciation; in others, it's rude. I love William Ian Miller's Anatomy of Disgust -- an awesome and fun exploration of grossness.]

I might have more than averagely decent manners, but I know I am not in my usual setting because I do not know how things are done here or what to say. I do not have the etiquette necessary to belong. Take conversation. I pride myself on being a conversationalist; I can talk to strangers and friends about a wide range of topics. I read the papers (often of more than one country and sometimes in more than one language); I read books; I keep up; I have ideas; I'm fairly well tuned into world, scientific and some kinds of cultural affairs.

Here, things are different. A conversation with a stranger has different appropriate topics, and even if the topic is the same, its value is different. Take, for example, the weather. I'm a Brit; I can talk about weather with the best of them. But not here. Here, the weather is not so much phenomenon as phenomenological. It is a way of knowing the land, the crops, the people, their relationships to each other, and their fears, hopes and dreams. You don't talk so much of whether the rain is an inconvenience but of the effects of underwater land on where and how a person is living.

I am unable to do this. I don't know or see enough. I mean well, but intention and skill are not the same.

As I post this, I'm watching the starlings circle the yard. There are about ten of them, dipping and swirling. I realize that their dance is the same as any I've danced in and that social conversation, with time, can be learned. I hope I have time; I hope people will grant me that little at least.

Dislocations: Demolition Derby

2013-08-12T21:40:00.001-07:00

Last night, I went to my first ever demolition derby.

For those of you who have never been or who have never heard of them, it's an event where drivers smash their cars into each other until only one operational vehicle remains. This can be a team or solo sport. Vehicles come in size heats -- compact, full size, truck, and even combine harvester. More here at Wikipedia. Nationwide rules for the sport are here.

I was prepared to hate it or to be slightly scared by watching what is effectively car accident after car accident. I expected the sounds of collapsing metal to bring back my own experiences of accidents; I was prepared to hate it, because so many of my friends have entered disability through car accidents. I was prepared to leave early because I didn't think I could watch the spectacle; I thought that I would feel bad watching people put themselves at risk. Somehow, I thought this would be much worse than watching people at Cirque du Soleil. The risk in these and other performances is both highlighted and contained by the spectacle of costumes and lights. I wasn't prepared to like it.

And I did. I had a great time.

I watched two heats: full size and compact. It was terrifying and fun at the same time. The drivers all wear helmets and the cars are reinforced, but there seemed to be no protection for necks and spines: no special seats, no special harnesses. The impacts seemed hard. Even though the drivers were prepared to move in the direction of the hit -- they often grabbed the steering wheel and steered through the momentum -- there were also multiple hits from multiple directions. The rules say that the hits have to be "aggressive" and, honestly, they were. I screamed and covered my face every time the impact looked bad, but I also watched people's bodies ripple and sway through the impacts. Several engines belched smoke; fire fighters stood by, holding extinguishers. Eventually, though, neither they nor the EMS peeps were needed. Family members said that the drivers always "felt it" the next day, but I wasn't sure what that meant.

I admired the skill of one particular driver; he played both for himself and created opportunities for others to succeed. He really used his car well; I loved the reverse shear and slide move that he pulled striking two cars at once and then, as he skidded out of it in a turn, he hit a third. The crowd cheered the drivers on -- "Hit him HARRRRRRRRD!" And these drivers played to the audience; I felt they were putting on a good show, even as they were trying to win.

Yeah, it was fun, and I cannot quite explain why.

Dislocations: Arriving

2013-08-11T13:34:00.001-07:00

Last night, I realized with a start that the splattering sound on the windshield was not rain, but insects.

Bugs. So many bugs. In just twenty or so miles, the windshield was covered; I could barely see. Wizard, I knew, was driving by childhood memory -- though the land he once knew is now different. Even I can see that over the course of the past twenty years, the excess water has reshaped this place. Once, there was field; then, I used to fear sliding off the road into the newly formed lake; now, there are high tensile cables, reflective shields, and signs: the water feels contained. I felt myself hoping he didn't really need to see, but knowing that he was also driving too fast to make the upcoming to me at least invisible turn. For years now, this turn has occasioned an explanation of the art of driving on gravel. I smile and hold my breath. This time, he is silent. It is not because he thinks I now belong -- he's already had to explain several aspects of local culture, cooking, and vocabulary -- I think it's because he knows that neither he nor I can live here.

The journey to this place is always harder than I remember. There are the unusual flight patterns, the absence of proper accessibility and the difficulty of the journey (so many flights and then a drive). It's also that I am travelling into a place where I don't know how to conduct myself, don't know the customs or mores, and where I don't get the grace one usually allows tourists. Approximately 400 people in this town; 600; 300; but 1300 here -- the county seat. We observe people camping at the local tiny airport; we're not sure why. There are signs for the county fair. This is a rural America I'm not terribly familiar with. It's what people mean when they say "heartland" or "flyover."

I'm not sure what to make of the changes I see. There are now more Japanese-American cars on the roads here; before, it was primarily American cars. There are now many Mexican and Chinese restaurants in the city two hours from our destination; one place is dedicated to burritos, another to tacos. I don't yet see listings for Indian or Thai. The town nearest to where I am staying has a new aquatic center. The sky seems the same: huge and hugely expressive. I don't know how to read the clouds, but I am moved by their diversity and fluidity. They move across cover vast expanses of sky, creating deep shadows on the ground. And the ground is green; high with crops, low with grass, wet with sloughs and yet dry from the lack of rain. I study the multiple textures of leaves, plants, grass, reeds, crops and .... My eye is distracted by movement: game birds, herons, other birds I can't identify.... rabbit, deer, beaver ... I can see the surface; what it means to the people who live and work here, I don't know.

The journey holds an unpleasant mirror. I really am the person who drinks only gourmet coffees, eats primarily non-American food in take-away situations; I'm a clothes and shoe afficionado, design freak, and urban urbane citizen (or at least I like to think so). When I don't have immediate access to these things, I get a little grouchy.

We turn onto the dirt road. I feel as if I am in a movie -- you know the kind where the woman hides in the crops only to be discovered by the bad guy? -- the narrow trail is surrounded by wheat. There's no street or house light, no moon either. The headlights don't reach far enough ahead for my comfort; their pool shallowly reveals trees, then, outbuildings, then a house. Wizard pulls up through the grass onto the patio. We've arrived.

Here's A Quarter For Your Trouble: More On Taxis In New York

2013-07-29T20:59:00.001-07:00

Trying to hail a taxi in New York is a job. Even when you have your techniques down and even when you know the best places at the right times, things can go astray.

Case in point: 8:30. Rush hour. I'm in my favourite place: a little bit away from the light, across from the library. I know that if I stand by the light, I will be one of many trying to catch a cab. I stand across from the library because I know that I will beat the light people to the cab and, further, that the library has a handy pull-in place. One guy passes me by: no comment. Another winds down his window and says his trunk is too small. I attempt to argue; I know that he doesn't know how small my chair is. I also know that it fits perfectly well in his kind of cab. I fail. The third gentleman sees me and slows. I smile and wave my hand to the pull in spot. The next things are a sting on my right arm and the clattering sound of something falling. I realize it sounds like dropped money. I realize the cabbie has just thrown me some money. To him, I'm not hailing a cab; I'm pan handling. I'm not business; I'm a charity. The red sting on my arm becomes the sting of humiliation.

For a couple of seconds, I'm frozen -- too stunned to even know what to do. I feel the tears rise in my eyes; the anger swells in my stomach, heart, and in the places in between. I look around; he's gone; no one else saw this? I try to carry on, catch a different cab, but I can't. I hop back onto the sidewalk and stop.

As I write this down, I recognize that I'm not really sure how to handle the next bit. I can't explain it to myself, so perhaps explaining it to you will help. Anyway. I picked up the coin. More than that. I started searching until I found the coin and then, I picked it up.

I am still not sure why I did it. After all, it's not as if I needed the quarter. It's also not the first time that I've been given money I don't want (here, for example). I didn't take the money then, so why now?Why subject myself to that kind of, well, I still do not have the words for it. I have actively been asking myself that question. And I do not know the answer.

Of late, I have been experiencing much more verbal street harassment than usual. The walks from my place to the subway station or from my place to the supermarket have been tougher than usual. I don't know what this means. Is it that I am taking my routes at different times of day and thus encountering different people? Perhaps, it's that things have changed. Have circumstances beyond my control brought different people into the neighborhood? Perhaps, it's the economy: When things are tough, do people under pressure take it out on those perceived to be more vulnerable? It could simply be that there are more assholes around. I don't really understand why harassment happens.

I've been getting angry. The only strategy I know for handling harassment is to pass by without acknowledging the person or the harassment. Experience has taught me that being polite, trying to recognize the humanity in the person only makes it worse. Sometimes, I think that people who are usually invisible are just trying to get a response, an acknowledgment that they exist. It's as if my lower social status (race and disability) mean that I, at least, should see them, should be grateful even for the attention. Even then, I know that silence is always the best response.

Inside, though, I am often biting back a bitter response or an angry retort. I don't like the words that pass quickly over my tongue; I am worried that if I actually say them I will make the situation worse, perhaps even unsafe. I am worried that one day they will slip out. (You can't call people pieces of shit and expect nothing to happen.) I worry, too, about a slippery slope. What if my self-affirming, protective internal reminders were to become contemptuous? What does that say about me?

Legally, the events of that morning might be termed assault -- not that I could bring a case. A small part of me sees the driver's move as an act of harassment. Yes, I get that unless this isn't quite the same thing; nonetheless, I feel the same way about both things. It's the same realm/pallet of emotions. Instead of treating me as a client, he just throws a coin at me. He could have just passed me by, but he stopped to make a statement. I don't know what he was saying, but he was intentional. He would rather chuck money at me than drive me? Does the money -- 25 cents -- mean anything? It wasn't a dollar, but it also wasn't a dime.

Part of me also wants to believe that the driver did not do it out of hate. He could simply have driven by; he wouldn't have been the first, and he won't be the last. Perhaps, he thought he was doing me a favour, that this was a "good" deed. He probably thought he was helping. None of this makes me feel any better, of course. The weight of misplaced good deeds is heavy. And disabled people experience a lot of them. Unwanted help is one of the most unpleasant parts of my day, and I frequently say so.

So, I am at a loose end. There aren't many places for the experience to go. I could and have put it into the deep pool of shit that happens. Fortunately, I can and do choose not to swim there. I have also put it on the web. Now, it can go anywhere.

Entering The Room

2013-07-25T08:21:00.001-07:00

I was at a party the other night -- the kind of party where you know three or four people a little and one person well -- and I was reminded again of how hard it is to enter the room, much less to meet new people and make friends.

I sucked at this kind of social situation when I was non-disabled; I suck at them now, even more. It's in part about the height differential; it's hard to go up to people and get into a conversation. It's also about the bulk of a chair; it's hard to move through crowds of people in small spaces. It's about people's fears about me. Disability makes people uncomfortable; they say stupid things. Its also about my fears. People say stupid things; I hate that; I feel and therefore am awkward. *I* say stupid things and that makes people uncomfortable. Then, they say stupid things. I almost spook them into it. I could just park in a corner and hope people came to me, but we all know how that would be. I'd be a wallflower. And people wouldn't come. So, I am stuck with it. If I want to have fun at a party, I have to be braver than I would be normally.

Parties, conferences, dinners and other kinds of gatherings mean I have to rely on the person I know well (I rarely go alone to these kinds of things). My partner or friend has to do double duty. They have to overcome their own shyness or awkwardness -- I mean, who isn't a little nervous at these kinds of things? -- and thry have to make physical, conversational, and emotional space for me. That's very hard work. And it is a lot to ask of anyone. I don't know any other way to do it, though. It is important to be in these spaces. To socialize. To participate in conversation. To present and be present. And I am most definitely socially awkward.

Would You Have Pulled The Plug II: The Moral Story

2013-07-19T17:43:00.000-07:00

Yesterday, I wrote about the Atlantic's disturbing medical story about the decision to remove life support from Joseph Brown. Today, I want to talk about the way in which the article is written.

For the reader, the facts of the case are only as clear as Ms. Masoodi lets them be; there is probably more to the story than the article suggests. Much more telling, though, are the ways Ms. Masoodi's cultural and class biases influence her narration. In Masoodi's hands, this is not so much a story about a series of questionable medical decisions, as it is a revelation of the author's class bias and concomitant concern about the value of a disabled life.

As a journalist, Ms. Masoodi has to find a way to make sense of material for her readers. There are no easy answers or simple ways to understand the facts. After all, how do you explain a family that would rather a loved one dead than disabled and a medical profession that is willing to withdraw life support at the family's request? Ms. Masoodi chooses to make her facts fit a story of class, ignorance and the wisdom of the medical profession.

The Moral Story: Ignorance, Disability And Class

Throughout, Ms. Masoodi's characterization of Mr. Brown's doctor (Dr. Williams) and of the other medical professionals is respectful and generally neutral. Williams and the other doctors are never subjected to a blistering analysis of how and why. What if Mr. Brown had died as a result of the premature withdrawal of life support? What would a "wrongful life" suit look like? The absence of these and other penetrating questions reveals the depth of the author's regard for the doctors as experts. With respect and expertise comes a certain absence of criticism. Williams is consistently portrayed as your typical diligent, caring doctor: an intelligent human being -- the person you would want to handle your care.

Though disability rights people are accustomed to such attitudes in the mainstream world, this particular portrayal is necessary for Ms. Masoodi's argument. With the wisdom of the doctors established, Masoodi leverages this portrayal to bolster her characterization of the family: If you believe the doctor's assessment of Mr. Brown, you are also supposed to believe his assessment of Mr. Brown's family: "'The family was ... a bread and butter working class family. I guess they did not have college education. They were nice people, but things had to be explained to them in basic terms," said Williams." And so it goes. Ignorance is a function of social class.

Ms. Masoodi further stacks the deck against the family by resorting to physical description. Mr. Brown's father, she claims, has a "coarse face." People of lower classes are physiologically unrefined. This detail is utterly irrelevant to the narrative flow of the story and to the meaning of events in general. It is, however, crucial to understanding the moral bias of the piece. Most people now believe phrenology to be a discredited "science," but Masoodi relies on these details to imply that someone with a "coarse face" makes analogical moral decisions. Physical characteristics determine moral characteristics which determine destiny.

We are not meant to understand Mr. Brown's family with any sympathy. Even though they state that they believe Mr. Brown would feel "worthless" after the surgeries, we are not meant to give credence to their position. We are meant to respect and unquestioningly accept the doctors' opinion. Williams' diligence is highlighted at the moments where he checks that the family understand Mr. Brown's medical -- the word used is "clinical" -- status. Masoodi repeatedly stresses that Dr. Williams gives the family technically specific medical information -- prosthetics and rehab clinics. This is all to say that medically, clinically, Mr. Brown will be all right; he can have "quality of life" as a disabled person. Masoodi repeatedly stresses the family's uninformed intransigence. The only tie-breaker to this stalemate is the fact that Mr. Brown survives and chooses the surgeries.

Thinking Outside The Box Of Fear: The Disability Story

This is where I step away from Ms. Masoodi's framing of events. I do not want to ask who was right or who was wrong -- as Masoodi seems to want her readers to do. This is not a simple case of stupid family vs. wise doctor. It is not even a story about quality of life as an amputee. And it is certainly not a scare piece "Communicate or Else!" It is, rather, a demonstration of how ignorance of disabled life on the part of everyone concerned (including the author) and certain realities of disabled life contribute to a difficult and terrifying polarizing scenario.

So, without blaming either doctor or family, I offer the following thoughts.

Dr. Williams understands only the clinical implications of the amputations: Mr. Brown will survive the infection medically. Brown will obtain prosthetics and undergo rehab. The medical professionals will have done their jobs. It will then be up to Brown and those around him.

At least according to Ms. Masoodi's portrayal, Williams does not understand the non-clinical, non-medical implications of disabled life. To be sure, there are prosthetics and rehab clinics, but it is bitterly hard to get the right prosthetic, to get them maintained, refitted, etc. Will Brown really be able to get access to the "best" prosthetics or, because he is "working class," will he be shunted off to a less than first-rate clinic that does not have access and/or cannot grant access to the best rehab, best technologies, and best life-long after care? Will Brown even be able to get disability assistance for the rest of his life? How easily will Brown be able to get counseling (if he needs it), a service dog, attendant care, disability specific medical care, primary care, access to a car, driving lessons, an accessible house, occupational therapy and technologies, job training, employment ....

These are the questions Ms. Masoodi should have brought to bear on her account. What if she had questioned the doctors?

Without easy access to the above, disabled life can be difficult. That's not to say that it does not have value, but it is to say that the system makes life more complicated for a disabled person than you would expect. We live not only with the medical and clinical realities of bodies and mind; we also live in and within a system that does not respect our humanity.

What if Ms. Masoodi had examined Mr. Brown's future in these terms?

We do not know whether Mr. Brown and family are as working class as the piece suggests. But if they are, I would like to bet that access to the kind of long term support that Mr. Brown will need will be very hard to come by. Disability is at the bottom of the funding pile and at the top of the possible cuts pile. And with regard to access, it's one thing in this country to be a doctor or (Ivy League student) journalist in this country. It's another thing to be a bricklayer.

What if Ms. Masoodi had considered the family's perspectives in this light?

This is not to say that the family is right, either. But what if the family accurately knows how disabled people fare? How might that influence their thinking about the value of their loved one's life? Ms. Masoodi's portrayal of Mr. Brown's family is monolithic in its stereotyping of social class. She reinforces prejudice instead of coming to understand how the social and medical safety nets in this country fail their people. This bias means that we cannot know how and why Mr. Brown's family come to choose as they did.

We should be appalled at the decision to end life support for Mr. Brown. Not because he comes from a 'coarse-faced' family who would rather he were dead than disabled -- though that scenario worries me deeply -- but because Mr. Brown encountered a system where it was impossible for anyone to do the right thing. And that almost cost him his life.

Would You Have Pulled The Plug I: The Medical Story

2013-07-19T00:50:00.000-07:00

I am greatly disturbed by this piece in The Atlantic the other day. It's a story that blends class, welfare policy, fear of disability, and medical ethics. The narrative is so complicated that I've decided to create two blog posts. The first is about the medical story; the second the moral. My hope is to reduce length and complexity as we wrangle with this horrible story.

As I understand it from Ms. Masoodi's account, the events are as follows:

Joseph Brown was in an ICU, unconscious and on various kinds of life support; he was expected to recover fully. That said, he was going to need several amputations: hands and legs. Though he had never discussed it with his family or girlfriend and had no health care directive, his family decided that Brown would not want to live that way. Brown was a manual labourer, a bricklayer. The family requested that life support be removed. The ethics committee was worried about removing 30 or 40 years from the man's lifespan, but then defaulted to the usual practice of allowing the family to make medical decisions. Life support was removed. Hey, presto! Mr. Brown began to breathe on his own. Just over two weeks later, he started to recover consciousness. When told about the dilemma, Mr. Brown choose life with amputations.

There's a lot to talk about here. So much room for outrage.

The Medical Story: Should We Rely On Families And Close Ones?

Ms. Masoodi seems in part to want the reader to focus on the question of whether or not it was right to withdraw life support. I am mostly going to ignore that question and explore instead the questions of whether or not we should rely on family input and on what the medical professionals thought they were doing.

When someone has not left advance health care directives and is not able to participate in their care or medical decision-making, it is customary to rely on the judgment of family/loved ones. At some level, there is no one else. I mean, your loved ones are more likely to have your interests at heart than the medical system, and there is a good chance you have talked to someone, telling them what you would want in a given situation.

The risks of this approach are clear; families may not know your wishes, may misinterpret your wishes, may not wish to carry out your requests, may not be able to distinguish between your desires and theirs, etc. etc. In theory, the medical ethicists and hospital lawyers are supposed to balance the possibly emotionally driven decisions made by families, particularly when as the Terri Schiavo case amply demonstrated, loved ones are not always of the same opinion.

Simply put, if you do not leave clear instructions in writing, your loved ones will have to guess and/or rely on a combination of their memories, hopes and fears. Their guesses will be rated in authority according to society's values. Your straight partners up until recently had more legal authority than your queer partners. Your marriage partner has more authority than your parents, etc. etc. Societal systems may not match your degree of comfort and your own confidentiality priorities, but that is the system that we have.

Here, unusually, the medical system seems to have been more interested in keeping Mr. Brown alive than his family. In that case, what do you do? I have been having a hard time looking at this series of events. I have to believe that Mr. Brown's doctors suspected that he would, ultimately, survive the withdrawal of life support. Otherwise, it seems to me that they would have been a party to a non-medically necessary ... I'm not even sure what the right word is here, murder?

At any rate, I do not subscribe to the terms that Ms. Masoodi uses. Wrongful life and wrongful birth are entering the public consciousness as ways of suing medical professionals after a disabled child comes into and survives in the world. I have not seen wrongful life applied in a situation like this one before, though I can imagine all kinds of adult situations in which it could be seen to be relevant. How the medical ethics committee debated the risks of wrongful life vs. wrongful death in Mr. Brown's case are beyond me. Ms. Masoodi repeatedly states that Mr. Brown was expected to recover and, post surgeries, live a full life. To intentionally engage in the withdrawal of life support without the expectation that Mr. Brown would survive is, to me at least, to intentionally assent to the unnecessary ending of a life.

But then again, perhaps what we are seeing is an example of disability double-think. It is perfectly acceptable to select against disability when dealing with a fetus. The lessons of euthanasia and disabled people teach us that despite being disabled and healthy--as the doctors expect Mr. Brown to be--it is also perfectly acceptable to select against disability in adults. It is theoretically possible that this is just another example of anti-disability selection. It is unlikely that we will ever know. Perhaps the bottom lines are that the family does not always know best, and that the medical profession should be approached with care.

The Medical Story: What Were The Ethicists Thinking?

Who knows? I certainly do not understand it.

But when it comes to disability, as followers of Ashley X and Sarah Murnaghan's stories know, medical ethicists frequently do not get disability. In this case, the family didn't know what Mr. Brown wanted, and, as Ms. Masoodi's essay suggests, they made their decisions through the lens of their fear about disability. The medical ethicists, despite fears of wrongful death vs. wrongful life, allowed the family to make their decisions.

This is a pretty shady case, but I am not sure how to correct the system to get a better outcome.

The medical story is not the most pernicious aspect of the piece, however. More disturbing is the narrative of disability and class; this will be my focus tomorrow.

You Don't Look Disabled (Again)

2013-07-15T21:47:00.000-07:00

After a performance, audience members often take the time to tell me how much they enjoyed the dancing. They are sometimes visibly moved by the experience and want to be able to say something meaningful to me. Often, however, what they end up saying is, "You aren't disabled," or "You don't look disabled." They have no idea how much those remarks hurt or how much they defeat the point of my work on stage.

Usually, when I grouse about this, someone steps forward to say that I should remember that they were just being kind and that I should appreciate the compliment. Preemptively, then, I understand that what they are trying to say runs something like this. "Once you started dancing, I was able to leave my fears, prejudices and stereotypes about disability behind. I was able to enjoy the performance. Thank you." I know that many audience members struggle to find words appropriate for describing a dance and for sharing their reactions; this is true, regardless of the disability status of the dancers. It is, however, a particular difficulty when talking about integrated dance.

Unlike more mainstream dance forms, integrated dance does not yet have a set vocabulary. Wherever you go, you are likely to find dancers using different words for the same move, and you will often find that different companies and dancers invent their own vocabularies. So, you get the picture. Integrated dance is individualistic on many levels. To me, that is one of the joys. I can see, though, that all the individualisms and uniquenesses can make verbalizing a response to integrated dance more than a little difficult to the average audience member. So when bad stuff happens, I mostly smile, thank the person and move on.

But here's the thing. I see disability as central to my artistry. If, as an audience member, you do not see disability, you are missing half the dance. The power of my lines and uniqueness of my movement come from the shape and capacities of my chair. I look different; I move differently. To watch me, is to watch someone seated in a wheelchair. To try to erase that is to try to erase half of my body and most of the movement. So, it's not just a matter of letting go of fear and prejudice; seeing integrated dance also asks members of the audience to actively evaluate and appreciate the artifacts of disability as they move and contribute to the performance. This is an integrated performance. Not seeing the the integratedness means that you might as well be at any other dance concert.

After one of my most recent performances, a disabled man came up to me and said with deep emotion in his voice, "You aren't disabled." I shot back quickly, "I most certainly am." He stammered and explained that he just meant that in the performance I was not disabled in or by the performance. (My formulation, not his.)

His comments have me thinking. No integrated dance performance is likely to focus on the things that I cannot do or cannot do well. Mostly, dance showcases my abilities, and because I am a professional with years of experience and training, I have a wide range of abilities and expressive capacities. I can do a lot. I can say a lot with what I do. If you come to a performance, you aren't going to see what I cannot do. Further, I work hard to make it seem as if the stuff I am doing is not difficult, excessively risky, or even costly for my body. The work is simply not about me or my body.

In trying to understand the man's comments, I began to wonder what he had seen and how it related to his own experience of disability. I remembered the recent internet conversations about a disabled boy left out of his prom -- see Bad Cripple, here. In integrated dance, the disabled dancers are not "left out" or "left behind." Even if in rehearsals or in process, we spend a lot of time "catching up" to or with non-disabled dancers, by the time the performance comes around we should not look left out. We should not seem unintegrated. Might it have been possible that this audience member was referring not to my physicality, but to his social and cultural experience of being disabled? This question haunts me. I could have been less quick to cut him off.

As I develop as a dancer, I am acutely aware of how what I do looks and how I look doing it. This most recent encounter opens a new chasm inside me. I expect my disability and disabledness to be present in the audience's mind all the time, simply because it is present in my mind and my experience of the dance. I do not forget that I am disabled when I dance. To the contrary, I live more fully in that disability. But I am becoming aware that, particularly when I am dancing without my chair, my disabledness is less visible. Perhaps even, I do seem able-bodied. It's a distressing thought: to be living most fully in my disabledness is to risk seeming non-disabled without the experience of actually being able-bodied.

That's a horrible sentence. As I live my disability most fully, I seem not to be disabled -- even though I am not having the experience of being able-bodied. The more I read this sentence, the more I realize that there is a gap between being non-disabled and being able-bodied. One is about visual appearance, the other experience. I feel gutted by the realization that my appearance belies my goal.

Finding Words

2013-07-14T18:47:00.001-07:00

I've not been able to find words to write about the recent injustices. Sometimes, the pain of living in this world is too great. It's been a tough and ugly week.

Some dance. Choreography by disabled artists Marc Brew and Claire Cunningham. Performed by Candoco, as part of the Cultural Olympiad.

Enjoy.

Performance Disaster

2013-07-10T14:54:00.003-07:00

It's been an age since I wrote. The UK trip was one of the most strenuous and generally tough experiences in a while. It seems that my chair was also having a bad time. So hard, indeed, was the performance, that my caster came off in the middle of the show.

To be fair to Sonia and to her manufacturer, I'm pretty certain that the weaknesses at the core of the problem can be traced to pot holey grass, inches deep gravel, bumps in the lawn, stairs, and some non-manufacturer approved mods. In fact, I've been having issues with the casters for, now, around four months. I thought that I might buy myself some time by replacing all the parts, but this show basically blew me and my chair out of the water.

By the third day, I knew I was in trouble: the wheel was loose, and I tried to fix it in between the first and second performances. I thought the fix would last. But I was so wrong. As we ran to make the entry, a performer asked how my chair was doing. I smiled and said that it would have to spend some time being repaired and maintained when this was over. Just as I finished that sentence, the wheel came right off. Poof.

There was a moment of stunned horror. I froze. We froze.

There's no obvious protocol in this situation. It's not as if you can just suck it up and carry on; the chair is non-functional. My options were a) hold the show until we could fix it, b) back out of this part until we could fix it, or c) dance in another chair. C was the winner. We arranged for one section to "loop" until a dancer could retrieve my chair. But even then, C is not a great option. My everyday chair is set completely differently from the one I dance in. It's heavier, wider, has heavier wheels (ergo grips), is less responsive, etc. It's a lovely chair, but not designed for that particular work. This, however, *is* a suck it up situation. Solution found. Show went on. Disaster averted.

I'm home. I've scheduled with a repair technician. The body is fine. The chair will be soon.

Onwards and upwards.

Audition Announcement: Full Radius Dance

2013-06-25T10:58:00.001-07:00

AUDITION ANNOUNCEMENT

Full Radius Dance is holding auditions for male/female dancers with and without physical disabilities.

Paid rehearsal and performance.

Monday, August 5 at 11:00 AM

The Atlanta Ballet Cobb Studios

2000 Powers Ferry Road, SE

Marietta, GA 30067

Successful applicants will demonstrate the ability to: 1) work within a collaborative environment; 2) follow directions and apply corrections; 3) show respect for the rehearsal process, for fellow dancers and the artistic director; and 4) demonstrate good body awareness and, if used, chair control.

Full Radius Dance recognizes that dance training opportunities for persons with physical disabilities are extremely limited. Therefore, for dancers with disabilities, no previous dance experience is necessary.

Dancers without physical disabilities should have a professional level of modern dance technique.

Dancers who possess an adventurous spirit are particularly suited for the work of Full Radius Dance.

Questions? Contact us at fullradiusdance@aol.com or 404-724-9663.

Accessibility: New York vs London

2013-06-16T12:36:00.001-07:00

At this point, I'm about ready to make some observations on moving around these two fabulous cities.

My first thought is: if you want accessibility: go to San Francisco! I'm constructing four categories: bus, subway, taxi, and pedestrian.

Bus

I thought that this one should have been even, but New York is the clear winner.

In New York, more than one wheelchair user can board a bus at a time -- What? You think we don't travel in packs? Yes, we do have friends!! I tried to board a bus after my friend got on. I promised I would transfer, but the driver just wouldn't let me on: "It's for your own safety!"

In New York, I've never been denied boarding because someone else was in the space. New York bus drivers have to get up, flip the seat up, and then clip the chair in place, using four "tie-downs." They do so aggressively and resentfully, yes, but they do do it. In London, there's simply a space which gets filled with prams/buggies/strollers and other kinds of clutterances. In theory, people should yield the space, according to stated policy; in practice, hell no!

What's with the design of the space? In London, there are no tie-downs (which I thought at first was a good idea!). You just "apply the brake" and face rearwards with your head and back against this backrest (in case, you get smacked against the wall). It all sounded good. But I have no brakes on either of my chairs, and I've never found them particularly helpful for travel situations. I like to have a little roll so that the whole thing doesn't tip because it couldn't move in the even of a sharp turn or sudden stop. I like to control my wheels all the time.

Subway/Underground

Here, again, I thought things should have been more or less even. Both cities have a really small proportion of accessible stations -- though I think London may have a greater proportion than NYC, particularly if you include the outer boroughs. London's train to platform gap is much worse than anything I've seen in New York, even if you include the shifting platforms on the 6 or the way out S at Times Square/42. That said, London is the clear winner.

London produces accessible maps. OK, it's a chore trying to understand the thing, but at least you know which lines are accessible, in which directions and where accessible transfers are possible. In New York, you don't. In London, there are staff! People!! People to help you find the right place to board (which is signed, by the way) -- something like board here for level platform at x station. People to radio ahead so they can help you off, if the gap is large. Things are clean -- I haven't seen any piss yet. If you are brave and if you don't mind being yelled at, you can take those long, deep, scary escalators. Actually, I wouldn't do that alone -- I was scared by them when I was a nondisabled adult -- but they do exist.

Taxis

No doubt about it. London is the clear winner! All taxis are accessible. You still have to hail the things (always a challenge), but they are accessible. No further comment necessary.

Pedestrians

Both cities experience unbelievable tourism. Swarms and hordes of people travel en masse, blocking pavements, looking upwards, looking outwards, looking anywhere but where they are going. But tourists take cues from residents, and New York's pedestrian culture is better than the British one. Granted, both cities could use a couple more kerb cuts, but the issue is more about walking culture and spatial relations. New York is the clear winner here.

Even though the strollers are bigger and badder than anything I've seen yet in London (think Chevy Suburban to Austin mini), New Yorkers have a better sense of progression and of where they (and their strollers, dogs, kids are).

I think it has to do with how New Yorkers walk: much more focusedly and purposefully than the average Londoner, apparently. Londoners (and thus London tourists) walk more slowly, stop more, and are less able to stay in a straight line! London might seem to have a better sense of "walk on the left," where New York has traffic in all directions, but Londoners wander. Nay, meander. It's killing me. People! Just keep going and use your peripheral vision.

PS: Everyone keeps telling me New Yorkers are so friendly. Perhaps. Londoners are more polite.

How You Read This Blog

2013-06-10T14:56:00.001-07:00

Dearest Reading Peeps:

Some of you probably know that Google Reader is going away at the end of the month. Over 90% of you who read here regularly still use Reader! What will you do? I, too, mourn the end of an era; I'm not sure whether I will be going with Feedly or Netvibes. The demise of Reader prompted me to look and see how y'all are using the blog.

In the past week, here are some stats about you:

Most popular web browser for mobile devices: Safari
Most popular desktop web browser: Firefox
Most popular subscription via web browser: Internet Explorer
Most popular OS: Windows
Most popular mobile device: Ipad
Most popular Internet service provider: AT&T -- just edging out Verizon
Most popular language: US English
Most popular search term: differently abled (leading to this post)
Most surprising search term: dancer vagina (leading to this post.)
Most popular linking network: wordpress.com
Most popular referring site: google.com
Most popular post: How To Push A Wheelchair (from 2006)
Most amazing statistic to me at least: There's at least one Windows NT machine still out there.

64% of you were new visitors who returned again and again! Hi there! Since you as a group provided most of the repeated (as opposed to unique -- someone who came once only) site hits, may I suggest that you might benefit from using an RSS reader. You get all the blog posts served up to you however and whenever you want. That way, you won't miss a post and you won't have to keep clicking on the site to see if I've updated.

I am hesitant to transfer my subscriptions over -- I read 323 of you on a regular basis -- but eventually, I will also have to yield to the powers that be. I will let you know what I decide.

Integration/Inclusion

2013-06-08T14:45:00.001-07:00

I'm in the UK for a new dance project, and I am thrilled. It's a fabulous opportunity to be part of something new and different. I auditioned for the project here, and now I am actually here. Doing it. Smile.

It's been over twenty years since I was last in the UK for any real period of time. I wasn't disabled then, and I am finding things to be very different. It was one thing to -- as I have done -- spend a day or two here and there just visiting family. Managing a longer professional and personal stay is an entirely different thing. More on that and on the actual project later. Today, I want to write a little about how I am experiencing the integrated dance culture: once again, things are different.

This is in part a question of language. More often than not, I use "integrated dance" versus "mixed ability" or "mixed" dance. West Coast's director would often point out that "mixed" ability makes it sound as if some of the dancers are good and some bad -- and you just know that the "bad" ones would be thought to be the disabled ones. I like to supplement that by saying that there are some "good" disabled dancers and some "bad" disabled dancers -- just as there are non-disabled dancers. (I'm using quotation marks because I don't actually agree with the idea of a "good" or "bad" dancer; I just want to point out that some dancers are more compelling than others and that has very little to do with actual physical ability.

Back to my point. Here, though, the operative term seems to be "inclusive" dance, and that has me thinking. If you have been a long term reader of this blog, you will know that I am always making arguments about how language informs reality.

Inclusion does not seem to work the same way as integrated and that makes me wonder about ways language shapes the art form. Inclusion is something offered by a majority group to a minoritized group. It is an offer extended, often graciously and genuinely, from a position of power and privilege to those who are deemed less fortunate. Inclusion can be given, and it can be taken away. On the surface of it, the outcome appears to be the same; I can go to dance class and perform, but this isn't full equality. Neither, I would argue, is it the same as an experience of integration.

For me, the differences start with adaptation and accommodation. If you include, you will probably have to make some adaptations and accommodations. You will do what is necessary to get a disabled person through the door, but the actual structure and systems that produce the inaccessibility will not change. Further, the needs of the next disabled person might be different: more adaptations and accommodations. Piecemeal retroactive inclusion tends to result in things like retrofitted ramps people cannot use because they are too steep. Or ramps that people don't even know exist because they have to be "put out" every time someone in a chair shows up. If you integrate disability into the design, then there is less need for the retrofitting and the experience is much more organic.

By now, the last sentence seems fairly obvious. There are, of course, reasons why buildings have to be retrofitted; you cannot just knock them down and start again. Dance, however, is an art. The edifice constructed by its builders is subject to interpretation and revision every time a new performer comes along. It makes sense to flex and adapt. Indeed, the very survival of the art depends on its ability to move away from and then return to tradition. It makes sense, at the very least, to investigate what happens if you trade inclusion for integration.

Such an exploration is good for the dance as a whole, but it is also good for the artists. As a disabled dancer, I am very aware of how inclusion and integration have shaped my career. Inclusion places a practical and emotional onus on me to adapt and accommodate to the mainstream without actually obliging the mainstream to change its core. Integration enables me to engage the possibilities that come from being a wheelchair user.

From what I see of the work, style, ethic, and ethos, however (and it could be that I am looking in the wrong places), the UK places great emphasis on including a disabled dancer in the mainstream. Mainstream training for disabled dancers just seems to be a lot more prevalent than in the US. Granted, this seems to be a recent development and, granted, dance employment is equally as scarce as in the US. But because there is now something of a systematic commitment to disability equality in the arts, training seems at least to be more possible. There are more companies (local, regional and national) and although it is precious little, there is comparatively more financial support.

This is a good and wonderful thing. I've argued time and time again that disabled dancers need and must have access to this kind of training, but there are some other things to consider as you develop dancers in this way. In an inclusive environment, disabled dancers are constantly trying to adapt and accommodate their bodies to tradition. The onus is on us to make it work somehow. Classes are lead by non-disabled dancers, movement is designed by non-disabled dancers, and non-disabled dancers set the tone, speed .... It's "wonderful" to be in these spaces, but neither the spaces nor the art change because we are present.

In many circumstances, that's OK. You don't necessarily want the art and forms of ballet to change just because a disabled dancer is present, but you do want a world in which disabled dancers can do ballet and in which the skills and abilities of disabled dancers are not limited by a dominant focus on inclusion.

Let me say that more strongly. Under some circumstances, inclusion can limit our development as disabled dancers. If you are constantly adapting and accommodating, you never learn the full extent and movement capacities of your disabled body. You never learn how to move with your assistive technologies as part of your body. You never develop and explore the power and potential of your body qua disabled body. Being able to do these kinds of things are part of the philosophy of integration and without it, integrated dance as an art form suffers.

Integration expands the development of the disabled dancers by drawing on the movement possibilities that emanate from the disability itself. It increases the capacity of the non-disabled dancers by asking them to question what they know about line, form, and the essence of a movement. It asks each dancer to examine their knowledge of and place within traditional movement vocabularies. The integration of disabled dancers lifts the non-disableds into new and foreign spaces where a traditionally recognized movement vocabulary takes on new meaning. It equalizes the relationship between disabled and non-disabled dancers. Both have access to tradition -- albeit differently. Both have access to the disabled dancers' movement -- albeit differently.

Including dancers in the mainstream is not the same as nurturing a new aspect of the dance field. They aren't the same thing. We want and need both.

Disability Arts and Culture II: Identity Isn't Automatically Art

2013-05-27T22:55:00.000-07:00

This is the second part of my disability art and culture series. First post here.

My title feels risky to me. It is as if I have said something that should not have been said. It is as if, for a moment, I have stepped out of sync with my community. But I am saying it, because I believe we have to tackle the question. So much swings on the weight of automatically.

Some definition of terms: I will be using the word "we" a lot.

By "we," I mean artists who are disabled (and whose work may or may not have something to do with the disability experience) and, perhaps to a limited extent, those who make work that in some way comments on or reflects on the artist's connection to the disability world. I limit my definition in these ways because

a) I find it extraordinarily hard to bear work coming from people who are not disabled or who have no connection to the world and who then suddenly decide to make work about disability. If these people absolutely have to make work about disability, I need it to comment on their experience and connection to the disabled world because the project of making work "about us, without us" usually results in objectifying, weak art.

b) Artists with disabilities do not necessarily have to make work about their experience, their impairment or, even the disability experience. Artists make work about things that provoke them.

B is important. Critical, in fact.

I have seen a lot of work by people with disabilities. Much of it is what I would call therapeutic art, i.e., work made in a therapeutic context, with the purpose of healing the disabled person from whatever "afflicts" them by encouraging "self-expression." The end product is almost always discussed as "self-expression" (by artists, therapists, and funders); the artistic quality (if any) is almost always hailed as "inspirational," "amazing," "incredible." The artists themselves and those around them tend to talk about "overcoming" any impairment and/or the difficulties of living with such an impairment. The work is of variable quality because the "healing" emphasis in the production environment tends not to train the artists in the necessary techniques or expose them to the work and conversations of larger art worlds. Occasionally, you find amazing, stunning work that comes from someone with a talent so huge that it is literally "overcoming" the situation it was produced in. Usually, though, the work is mediocre as art because the goal is not to mentor emerging artists, but to facilitate healing or even to entertain them.

Definition of terms: Waves. In my next section, I will be talking about "waves," as they are loosely used to describe the directions of the disability studies/disability movement. I like very much the description from Lennard Davies' introduction to the second edition of the Disability Studies Reader (Routledge: New York, 2006), xiii.

The first wave involved "foundational ideas, assembling a coherent identity for a wide range of impairments, and pushing for respect, recognition and research." The second waves "question and make new assertions about the 'truths' of the field. ... There are further questions about who has the right to articulate, represent and lead disability studies and organizations. Among the paramount issues, is a questioning of the biases, prejudices, and ideology of disability studies toward minorities, ethnicities, and racialized groups. Linked to all of this is questioning whether one can actually have a monolithic view of disability...."

I often interpret "first wave" art as a response to the weaknesses of therapeutic art. Artists present their natural selves, represent their experiences -- our experiences -- make statements about pride, existence as resistance, etc. etc. I like a lot of this stuff. Sometimes, just seeing, being present, witnessing changes everything. Sometimes, though, just putting stuff out there is not enough.

We do need to keep the first wave going, but I do not want us to get stuck there. There is sometimes power in these kinds of projects. Many of us need to make this kind of work before engaging in other domains. BUT there are two significant problems with the first wave.

Whose needs does it serve? I think that there is a tremendous external pressure for us to produce primarily in this way. The first wave seems to be the acceptable box for disability and disabled artistic production. It is harmless; it does not actively threaten. It does not often breakdown the artistic world; we are just another minoritized group pushing back and making a (powerful, yes; necessary, yes) statement about our identities and existence. First wave art seems more palatable to the outside world than to the community. It is the artistic equivalent of The Sessions: radical only if you are outside the community -- who knew disabled people had such sexuality?

The second problem is nestled in questions of quality, place in the artistic world, and personal taste. I am coming to see that too much of the work produced in the first wave vein is no longer rewarding for me as an artist, audience member, gallery goer, and reader. Representation is now rarely strong enough to meet my desire for good art. Art has to grow, provoke, and turn my mind around. It has to feel dangerous, urgent, compelling. I understand that it may be critical for you to make work in the first wave mode. I support the idea that such work should be made; I have felt the impulse to make work that specifically tells my disability story in some way. That said, I do not think that this should be seen as the centre piece of our artistic production and certainly not as a goal to which we should aspire or height we should seek to attain.

It is not that first wave-y depictions of the disability experience are to be discarded. Some work is soul-searing; the kind that wrenches a gut, that it seems you will never forget. But it is also the case that while we were finding our feet, voices or whatever, the artistic conversation moved on. So, unless your picture of your toe, portrait of you in your chair, script about your accident and stay in rehab, dance of you rolling or spazzing or whatever happens to be unusually earth-shattering, it just will not play in LA.

May I refer you back to a lengthy and passionate post about disability and bad art? This is an early somewhat irate post; I am at a little more peace with the arts world today. But here are some classic extreme moments:

Inclusiveness means that disabled people should have access to the means to produce their art. Access means that disabled people should be able to get in the door and see, touch, hear the art (or perhaps its the other way around, but you get my point!) But access to art does not mean that the work itself is Art.

And, people, disability or no, it requires experience, training, technique, and work to produce art. You don't just wake up the next day and call yourself a dancer, artist, writer, filmmaker ... Geez. People, disabled or not, work -- as in the case of my colleagues work for years, day in and day out, to become dancers; they cross train, take class, experiment, rehearse, try and fail. And they aren't the story in their work; the work itself is paramount. We don't just splosh paint, howl into a microphone, roll around, slap words on a page and call it art. We don't just release emotion/feeling/experience into a piece and call it art; there's a complex process in which skill, training, quality, feeling, personhood, and presence combine in volatile ways."

Or:

Crip art. Really good crip art gets you. It gets under your skin. It can sneak in slowly and gently and then sting you when you aren't ready for it. It can seep through your pores undetectably; before you know it, you are changed by it. It can blow your socks off. It can twist your mind, fuck you up, make you weep, blow a gasket; it can stun you, numb you, seize your mind, and change your world. Or it can be simply blah. Either way, the best of it has little to say about the art-maker.

If crip art makes a difference, it is not because it teaches or has anything to say about disabled people in the world. If crip art makes a difference, it is connected to a movement. If crip art makes a difference, it is because it penetrates the core.

In part three of the series, I plan to talk about "good art."

When Your Heart Isn't In It

2013-05-24T14:45:00.006-07:00

I have two performances this weekend. They aren't big ones, by any means. I will dance for 10 or 11 minutes a night in a kind of gala show. That's it. But. My heart is not in it. Not for a minute. I do not want to dance. I. Do. Not. Want. To. Dance.

I feel resentful. There, I've said it. I do not feel generous with my body or self. I feel resentful. I do not want to go backstage into crammed, dusty, dirty areas. I do not want to use shared mirrors in bad light at inaccessible tables. Why can't things be clean and a little comfortable? It feels like the artists are the last priority and the least respected. I am not feeling the energy, so I do not want to offer myself to you tonight. I know you, the audience, have given money, time, effort and spirit to be here. I appreciate that, but I want to curl up tonight and protect myself. I want to lie under hot blankets and watch television. I cannot be open and welcoming. And all of that is very hard to admit.

Performing is never easy; doing it when you do not want to is the hardest part of the job. I know that I am not the only one in this situation; there are gazillions of Broadway performers who do the same show night after night after night for years. There have to be times when they do not want to do it. Neither I nor they can let this attitude show. That's when mistakes or, worse, injuries happen. At a minimum, you just look like you are literally going through the motions.

I rarely feel like this. But when I do, I have some routines to get myself to a place where I create a performance that works -- even if it is not a show where I feel like I am on fire. I begin by eating and drinking as much as I can. I like to drink almond milk and followed by some dark chocolate. My favourite granola with blueberry kefir is next. Then, a little pu-erh tea and some coconut water. Hydration is key. Then, I get into it with my body. As I sit down to my gyrokinesis DVD (transferred over to my phone), I try not to be impatient. I wait. And I wait. Eventually, my body begins to feel OK; I take pleasure in the sensation of my muscles responding. A sense of hopefulness rises. I put on some make up on; stretch again/more; put on my costume and wait. Finally, I lift my headphones only when I am being called to places.

I'm never ready at these times, so I am deeply scared. But it's like being on a rollercoaster; there's nothing you can do to stop it. You have to start, and once started you have to finish; anything short of that means disaster has happened. You have to finish.

I take a deep breath, push onto stage, feel the coldness in my clammy hands, take my place, and wait for music and lights.

Late Night Thought

2013-05-22T22:59:00.000-07:00

It's been one of those feed/stream days: so much injustice, so much wrong, too much to protest, too little change. Tomorrow, I am going to get bodywork -- not so much the kind that fixes the tight, twisted and torqued, more the kind that reconnects body, mind, and soul; I can't wait. In between, however.

It's that moment of in between that has my attention.

Of late, I've noticed that I've been creating more and more of these in between spaces for myself. I've been reclaiming time. And noticing what I do in the space that I think is "empty." I don't need to fill that time by any means; I do want to be able to see meaning or intention in my daily life. I think this will help me balance the extremes at which I have been living. I've performed and/or travelled now every weekend but one since March 23rd. I'm tired; I feel as if the running will never stop. I'm so focused on getting to all the places and doing all the things that I can't actually see the living that is happening as I do so.

By explicitly naming and connecting these two experiences, I create an in between space. I make something of the time in between my last look at the internet and the first touch of my bodyworker. I will move from the injustices to a reconnecting of body, mind, and soul. These are bookends -- arbitrary ones, yes -- but bookends nonetheless. All of a sudden the time that on another day I might have called sleep and then morning -- that time becomes meaningful. I will journey from the experience of distress and overwhelmedness to welcoming a sense of peace and integration.