Halloween On Wheels

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

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

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

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

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

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

The films themselves, too, can be divided into these two camps: those that aim to exploit our vulnerability and haunt us after we’ve left the theater, and those that create a phobic object only in order to defeat it, so that the audience can leave feeling triumphant and relieved.

The subgenre of horror movies involving protagonists in a wheelchair can be similarly split: there are those that make the physically challenged—us, remember—into victims, and those that ultimately empower them. Of the titles that my colleagues and I brainstormed for this piece (thanks to Benjamin Strong, Mark Asch and Matt Zoller Seitz), there’s a roughly even distribution of films between these two categories—enough, ostensibly, to satisfy disability advocates and a certain kind of horror fan alike.

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

Two Short Thoughts

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


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

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

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

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

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

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

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

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

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

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

Disability At Work

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

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

Sins Invalid IV: Possibly NSFW

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

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

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

Sins delivers.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

x-posted at sexgenderbody

Becoming Disabled On the Job

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

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

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

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

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

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

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

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

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

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

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

Inspiration

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

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

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

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

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

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

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

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

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

Violence, Abuse, Protection

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

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

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

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

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

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

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

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

CAPE: Curriculum on Abuse Prevention and Empowerment

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

Refreshments provided!

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

All programs at the Library are free.

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

Sign language interpreted and wheelchair accessible

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

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

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

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

Dear Ms. Smith, Stephanie, if I may:

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

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

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

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

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

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

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

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

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

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

Good luck!

Sincerely,

Wheelchair Dancer

When Simply Stating Your Truth Isn't Enough

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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