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.
Wednesday, May 22, 2013
Monday, May 20, 2013
Disability Arts and Culture I: Doing It Properly?
When a New York Times music critic is as interested in how Mr. Levine controls his wheelchair as he is in the performance the conductor created, you know there is trouble afoot. Here's the piece: it's a review of Mr. Levine's return to conducting the Met Orchestra at Carnegie Hall.
Like Mr. Tommasini, the critic, I also want to engage the question of whether Mr. Levine did a good job as a conductor. But I see the criteria differently. I like to ask questions such as: Does Mr. Levine bring out a performance that moves you? Does the orchestra soften and yield under his baton? Does the music that emanates from the musicians take root inside you and flourish? What is his interpretation like? How does it fit with/break from tradition? Was the orchestra well-balanced? Are the musicians playing well? If I can answer yes to these and other similar questions, then I can say that he is doing a good job. I do not know how much that has to do with Mr. Levine's use of a wheelchair and how much not. It seems that the New York Times most certainly does, however. And while they know this much, they do not know how to talk about the fact of a disabled conductor.
First, there's the bad language. Mr. Levine did not enter the auditorium, he "cruised" onto the stage in his wheelchair and the audience stood to give him an ovation -- because the only ovation that matters is standing. The false dichotomies are apparent from the very beginning. Much is made of the special platform from which he conducts, how it blends with Carnegie Hall style -- because accessibility is ugly, right? And we can't have ugly at Carnegie Hall. [One might wish that such care had been taken in providing seats for disabled audience members, but perhaps that one might be being unnecessarily bitter....]
It turns out that the reviewer decides that Mr. Levine is back -- perhaps not back as Music Director (Mr. Levine's official title, as we are reminded) -- but he has returned as a conductor. The music is "serene, poised, and glowing." It's music on a par with the art Mr. Levin has created before his injuries. Fabulous. Finally. But after this three word assessment, more time is spent on Mr. Levine's medical history -- surgery, injury, shoulder, back. All this complexity, for Mr. Tommasini, makes Mr. Levine a conductor with "something to prove." Mr. Tommasini concludes that we should delay speculation on Mr. Levine's future and instead "bask in [Mr. Levine's] musical glory."
But does Mr. Levine's medical history and physical situation mean that he has to demonstrate again his value as a conductor? It's a long and complicated question, but tackling it helps us get to the core of the disability arts and culture movement. Addressing it helps us understand why and how disabled artists can take their well-earned places in the pantheon of admired art-makers. Mr. Levine's physicality may be one thing, but I believe that his skills as a conductor are not necessarily tied to the state of his body -- no matter how inseparable the NYT would have us believe the two are. Mr. Tommasini treats us to the following paragraph:
This is something of a fallacy. What does it take to draw music out of an orchestra? Do we have to define or experience conducting as "waving" of the arms? What does it mean to conduct anyway?
I would like to begin by positing that conducting does not have to come from the arms. Mr. Levine has to be able to communicate with the orchestra, yes, but he does not have to move his arms to do so. From over fifteen years of orchestral experience at a variety of levels, I know that some of the most rewarding and scary moments come from eye contact, a raised eyebrow, a twitch of the mouth. Indeed, some of the most intimate communication between musician and conductor is invisible to the audience -- in large part because it is not created by the arm. So, why do we persist in making the arm the sign of efficient conducting?
I am tired of writing pieces that deconstruct the ignorance and ableism in the New York Times and, in general, in a wide variety of review pieces. (In a different venue, I had a nasty little series called #hownottowriteaboutdance.) I'm not getting anywhere; let me try something different.
What if Mr. Levine stopped trying to accommodate his body to the expected way of conducting, i.e., with his arms? What might he find? A sound? A bounce? A jiggle? A glance? A movement of head or chair? A twist or turn? How electrifying would it be to play under a conductor who was not in pain and was not at risk of hurting their body in an attempt to appear normal? Then, there's that moment of infelicitous chair movement. What if instead of trying to accommodate Mr. Levine's chair, the good people at Carnegie Hall made space for Mr. Levine's whole body and created room for a potential new style of conducting? Would there be new architecture? Better integration? A more powerful connection between orchestra and conductor? Communication is about the conductor -- the body and the person -- but it is also about the specifics of situation and environment. It is both societal and individual. The movement of the arms is an outward manifestation of the art, but it is not the whole or even the most significant part.
Mr. Levine is a powerful and amazing conductor. He has the presence and track record to change how we experience conducting as an art form. I make no assumptions about why he has not prioritized or presented himself as a disabled artist; it is enough that he returned to the podium in his chair. My ire is reserved for those who make it impossible for the art to rise from the body as it is, in its complete forms -- chair, assistive technologies, diverse communication patterns and styles. These are the people who stifle artistic ingenuity and progress.
Working in this whole, integrated way is what it means to be part of the disability arts and culture movement; being able to work in this way is why the movement is so necessary. "Properly" in my title does not and should not mean doing it the way it always has been done. "Properly" means doing it. With the art of body and mind, exactly as they are.
Like Mr. Tommasini, the critic, I also want to engage the question of whether Mr. Levine did a good job as a conductor. But I see the criteria differently. I like to ask questions such as: Does Mr. Levine bring out a performance that moves you? Does the orchestra soften and yield under his baton? Does the music that emanates from the musicians take root inside you and flourish? What is his interpretation like? How does it fit with/break from tradition? Was the orchestra well-balanced? Are the musicians playing well? If I can answer yes to these and other similar questions, then I can say that he is doing a good job. I do not know how much that has to do with Mr. Levine's use of a wheelchair and how much not. It seems that the New York Times most certainly does, however. And while they know this much, they do not know how to talk about the fact of a disabled conductor.
First, there's the bad language. Mr. Levine did not enter the auditorium, he "cruised" onto the stage in his wheelchair and the audience stood to give him an ovation -- because the only ovation that matters is standing. The false dichotomies are apparent from the very beginning. Much is made of the special platform from which he conducts, how it blends with Carnegie Hall style -- because accessibility is ugly, right? And we can't have ugly at Carnegie Hall. [One might wish that such care had been taken in providing seats for disabled audience members, but perhaps that one might be being unnecessarily bitter....]
It turns out that the reviewer decides that Mr. Levine is back -- perhaps not back as Music Director (Mr. Levine's official title, as we are reminded) -- but he has returned as a conductor. The music is "serene, poised, and glowing." It's music on a par with the art Mr. Levin has created before his injuries. Fabulous. Finally. But after this three word assessment, more time is spent on Mr. Levine's medical history -- surgery, injury, shoulder, back. All this complexity, for Mr. Tommasini, makes Mr. Levine a conductor with "something to prove." Mr. Tommasini concludes that we should delay speculation on Mr. Levine's future and instead "bask in [Mr. Levine's] musical glory."
But does Mr. Levine's medical history and physical situation mean that he has to demonstrate again his value as a conductor? It's a long and complicated question, but tackling it helps us get to the core of the disability arts and culture movement. Addressing it helps us understand why and how disabled artists can take their well-earned places in the pantheon of admired art-makers. Mr. Levine's physicality may be one thing, but I believe that his skills as a conductor are not necessarily tied to the state of his body -- no matter how inseparable the NYT would have us believe the two are. Mr. Tommasini treats us to the following paragraph:
He [Mr. Levine] looked physically up to the task. He showed flexibility in his upper body, as he has described in recent interviews. He seemed comfortable waving his arms and giving emphatic cues. Mr. Levine was actually bouncing around on the chair, smiling at the musicians, sometimes singing the music audibly and looking altogether unrestrained.Mr. Tommasini assesses Mr. Levine's ability to conduct by attempting to read his body. There's flexibility and range of motion. There's no visible presence of pain; indeed, Mr. Levine seems to be enjoying himself. This freedom is soon ended; once the piece is over, Mr. Levine is unable to turn his chair easily (to take a bow), and two musicians rise from their seats in evident concern. These two vignettes are telling: They inform us about Mr. Levine's skill, capacity as a conductor and reveal something about his comfort in his chair. More importantly, they help us see what is important to the reviewer. For Mr. Levine's success to be complete, he has to be able to erase any sign of difficulty and be able to perform as he did before.
This is something of a fallacy. What does it take to draw music out of an orchestra? Do we have to define or experience conducting as "waving" of the arms? What does it mean to conduct anyway?
I would like to begin by positing that conducting does not have to come from the arms. Mr. Levine has to be able to communicate with the orchestra, yes, but he does not have to move his arms to do so. From over fifteen years of orchestral experience at a variety of levels, I know that some of the most rewarding and scary moments come from eye contact, a raised eyebrow, a twitch of the mouth. Indeed, some of the most intimate communication between musician and conductor is invisible to the audience -- in large part because it is not created by the arm. So, why do we persist in making the arm the sign of efficient conducting?
I am tired of writing pieces that deconstruct the ignorance and ableism in the New York Times and, in general, in a wide variety of review pieces. (In a different venue, I had a nasty little series called #hownottowriteaboutdance.) I'm not getting anywhere; let me try something different.
What if Mr. Levine stopped trying to accommodate his body to the expected way of conducting, i.e., with his arms? What might he find? A sound? A bounce? A jiggle? A glance? A movement of head or chair? A twist or turn? How electrifying would it be to play under a conductor who was not in pain and was not at risk of hurting their body in an attempt to appear normal? Then, there's that moment of infelicitous chair movement. What if instead of trying to accommodate Mr. Levine's chair, the good people at Carnegie Hall made space for Mr. Levine's whole body and created room for a potential new style of conducting? Would there be new architecture? Better integration? A more powerful connection between orchestra and conductor? Communication is about the conductor -- the body and the person -- but it is also about the specifics of situation and environment. It is both societal and individual. The movement of the arms is an outward manifestation of the art, but it is not the whole or even the most significant part.
Mr. Levine is a powerful and amazing conductor. He has the presence and track record to change how we experience conducting as an art form. I make no assumptions about why he has not prioritized or presented himself as a disabled artist; it is enough that he returned to the podium in his chair. My ire is reserved for those who make it impossible for the art to rise from the body as it is, in its complete forms -- chair, assistive technologies, diverse communication patterns and styles. These are the people who stifle artistic ingenuity and progress.
Working in this whole, integrated way is what it means to be part of the disability arts and culture movement; being able to work in this way is why the movement is so necessary. "Properly" in my title does not and should not mean doing it the way it always has been done. "Properly" means doing it. With the art of body and mind, exactly as they are.
Monday, May 13, 2013
Choosing Mothering
Yesterday (when I started this), it was Mother's Day in the US, and many of the blogs I usually read had posts by the authors honouring their mothers or mothers in general. The same was true on my facebook page. It was Mother's Day, and everyone, it seemed, was remembering, paying tribute to their mother.
I wish for an easy relationship with my mother; one of the kind so often offered as a model here -- the one in which mother and daughter are best friends, soulmates, one half of each other. I long for that relationship, so that I, too, can easily join the hordes #honouringmymother. At the same time, I also want to acknowledge that some of what we might conventionally call "mothering" came from my father; some came from a teacher at school. Even as I honour my mother, I want to recognize that mothering is also more extensive and complicated than we commonly mean when we say "mother."
Both the theme of my relationship with my mother and its actuality are that of battle. My mother fought for me. She fought to give birth to me, to raise me, and, as she and I got older, we fought each other. That's not the whole story, of course. She loved me. She cared for me. She did all the things that you would expect and more. She invested her hopes and dreams in me. She did everything she could, emotionally, mentally, physically, to help me succeed. She gave everything. And we fought.
I don't understand why things went so wrong. I do not know why things are still so wrong. It's been over twenty five years since I left home; I don't understand why our relationship looks nothing like the ones so many of my friends have. I don't understand why our relationship looks nothing like the ones reported, honoured, treasured ... I simply do not understand. And because I don't understand, I have no idea how to correct it (various blog posts report some of the efforts). I've tried over the years, but the smallest things like going to a nail salon, having dinner, seeing a show don't enable the connection. Nor do they help to create an opening to begin the conversations. Direct approaches do not work -- oh, boy, do they not work. So, I do the small things, and I hope that one day there will be a change. In the meantime, I can honour my mother from afar.
I'd like to also publicly acknowledge my mother in the movement. When I was lost in the medicalities of my body, this woman reached out to me and ushered me into the world of disability politics and disability arts and culture. Along the way, we went through some of the medicalities; she taught me the tips and tricks. We laughed, partied, shopped, saw theater, dance, film. We ate, talked, ate, talked, laughed and more.
I like to think of myself as a "self-made" person in the best of the American tradition. And it is true; I *am* self-made, over and over again. But the truth of the matter is also that I would not have the knowledge and skills necessary for these endeavours had it not been for all of my mothers.
Thank you.
I wish for an easy relationship with my mother; one of the kind so often offered as a model here -- the one in which mother and daughter are best friends, soulmates, one half of each other. I long for that relationship, so that I, too, can easily join the hordes #honouringmymother. At the same time, I also want to acknowledge that some of what we might conventionally call "mothering" came from my father; some came from a teacher at school. Even as I honour my mother, I want to recognize that mothering is also more extensive and complicated than we commonly mean when we say "mother."
Both the theme of my relationship with my mother and its actuality are that of battle. My mother fought for me. She fought to give birth to me, to raise me, and, as she and I got older, we fought each other. That's not the whole story, of course. She loved me. She cared for me. She did all the things that you would expect and more. She invested her hopes and dreams in me. She did everything she could, emotionally, mentally, physically, to help me succeed. She gave everything. And we fought.
I don't understand why things went so wrong. I do not know why things are still so wrong. It's been over twenty five years since I left home; I don't understand why our relationship looks nothing like the ones so many of my friends have. I don't understand why our relationship looks nothing like the ones reported, honoured, treasured ... I simply do not understand. And because I don't understand, I have no idea how to correct it (various blog posts report some of the efforts). I've tried over the years, but the smallest things like going to a nail salon, having dinner, seeing a show don't enable the connection. Nor do they help to create an opening to begin the conversations. Direct approaches do not work -- oh, boy, do they not work. So, I do the small things, and I hope that one day there will be a change. In the meantime, I can honour my mother from afar.
I'd like to also publicly acknowledge my mother in the movement. When I was lost in the medicalities of my body, this woman reached out to me and ushered me into the world of disability politics and disability arts and culture. Along the way, we went through some of the medicalities; she taught me the tips and tricks. We laughed, partied, shopped, saw theater, dance, film. We ate, talked, ate, talked, laughed and more.
I like to think of myself as a "self-made" person in the best of the American tradition. And it is true; I *am* self-made, over and over again. But the truth of the matter is also that I would not have the knowledge and skills necessary for these endeavours had it not been for all of my mothers.
Thank you.
Sunday, May 5, 2013
Do Over II: Looking For Home
Today is my last day in California for about six weeks; no, make that approximately nine or ten weeks. Over the next two months, my life is going to be interesting. I have performances for two different productions in two different cities. I will then be returning to the UK for approximately six weeks. All of this has inspired what I would have called as a child "panic stations." Longer term readers might remember that I hate packing; it distresses me. A lot.
I solved the tour packing by making lists and kits that I never took out of the suitcase. I would come home, wash my stuff, put it back in the case, refill any bottles and close the case. That way, I never forgot anything. Ever! It was very satisfying. I solved the bi-coastal life problem by simply having two (small) wardrobes and two sets of body and hair products. It made the commute easy: all I had to do was pack my computer, headphones, and some travel toiletries in case I got stuck. No packing and no stress.
Now, I'm dealing with a larger set of concerns. The UK! Nominally my homeland, now my former homeland, a place I haven't lived in over twenty years. I went to get my hair cut. "It has to last until July," I insisted. My sister reminds me that people in the UK do manage to get their hair cut, too. And that is part of the dilemma. Nothing is the same. I am not the same. My old brand of deodorant has probably gone -- and are you still wearing the same deodorant that you wore in your teens? I use different hair products. It's home, but it isn't home.
I notice how much I define my sense of personal home, not by geography but by my things. This makes tremendous sense to me; I live primarily in two places. I travel thousands upon thousands of air miles a year. I've got a different lifestyle planned around living in hotel rooms for touring, and I love to travel with the Wizard (yet another way of living). I am always on the move. I use my things -- my clothes, my hair products, my lotion, even a bracelet or necklace -- to create a sense of myself that can go out into the world or even, softly, inward to bed with the people I care most for. These help form the "me" that people relate to and with.
This is why packing is so important and so stressful. If I get it wrong or if I have forgotten some menial thing, I am scared that I will somehow be less complete. I can always buy a tooth brush, but using mine reminds of who I am.
So, some lists.
Wheelchair
I solved the tour packing by making lists and kits that I never took out of the suitcase. I would come home, wash my stuff, put it back in the case, refill any bottles and close the case. That way, I never forgot anything. Ever! It was very satisfying. I solved the bi-coastal life problem by simply having two (small) wardrobes and two sets of body and hair products. It made the commute easy: all I had to do was pack my computer, headphones, and some travel toiletries in case I got stuck. No packing and no stress.
Now, I'm dealing with a larger set of concerns. The UK! Nominally my homeland, now my former homeland, a place I haven't lived in over twenty years. I went to get my hair cut. "It has to last until July," I insisted. My sister reminds me that people in the UK do manage to get their hair cut, too. And that is part of the dilemma. Nothing is the same. I am not the same. My old brand of deodorant has probably gone -- and are you still wearing the same deodorant that you wore in your teens? I use different hair products. It's home, but it isn't home.
I notice how much I define my sense of personal home, not by geography but by my things. This makes tremendous sense to me; I live primarily in two places. I travel thousands upon thousands of air miles a year. I've got a different lifestyle planned around living in hotel rooms for touring, and I love to travel with the Wizard (yet another way of living). I am always on the move. I use my things -- my clothes, my hair products, my lotion, even a bracelet or necklace -- to create a sense of myself that can go out into the world or even, softly, inward to bed with the people I care most for. These help form the "me" that people relate to and with.
This is why packing is so important and so stressful. If I get it wrong or if I have forgotten some menial thing, I am scared that I will somehow be less complete. I can always buy a tooth brush, but using mine reminds of who I am.
So, some lists.
Wheelchair
- every spare screw, back pad, foam plate
- inner tubes
- new tires (or should that be tyres, now?)
- gaffer tape
- pump
- extra cushion?
- tool kit
Dance
- knee pads and spare knee pads
- strap for adventurous moves
- shoes?? (I hate wearing shoes
- leg warmers
- neck wraps
- warm clothes
- performance underwear (neutral leotards, bras, shorts -- not clear what I need)
- regular underwear -- tights, bra
- pants
- tops or leotards (how formal are they?)
- hat
- plastic pants -- outdoor performance and rehearsals: it is going to rain!
Medical
- medication
- heating pad
- ice machine
- therabands
- pads and balls
- back brace (just in case)
- beanies (if there's microwave)
Personal
- no clue yet
Saturday, May 4, 2013
Disability, Success and Pride: Can You Have A Publicly Embodied Life?
After a recent performance, an audience member congratulated me. I was happy with my performance and with the show as a whole, so I smiled back and laughed. I was about to tell her about how much the show had meant to me. She interrupted me. She was glad that I had been given a disability; I had to be humbled somehow. I was gobsmacked (and yet, weirdly, not -- strange things happen all the time).
Her comments struck me deeply; I was in post-show vulnerable mode. This is why I hate talkbacks and "q and a" sessions; they just give people a chance to say a well-meant utterly horrible thing. It's taken a while to think about this. I'm sure she didn't actually mean that literally. Well, OK; I'm not quite sure, but I am hoping that she didn't actually mean that. For that to be true, she would have had to have read my disability as a sap that helps me pay for the sins I have committed -- specifically, disability is the counterweight to my pride, a payback for my happiness and pride in my achievements. Disability stops me. I don't quite believe she meant that, but I do think there's a real thing to be understood in her comments.
Too often, because disability is understood as a lack or failing -- as a pitiable position of weakness (if not revulsion) -- it is easy to understand disability as a punishment, humbling, or just deserts. It is virtually impossible in this Christian inflected, North American culture for people to understand disability as anything much other than a metaphor or signifier; it is not an embodied reality. It is never neutral.
This encounter resonated hard for me while I was reading a personal blog/opinion-y piece in the Huffington Post. It's one of a personal series of reflections by a disabled writer and speaker, Linda Noble Topf. Noble Topf is a motivational speaker and writer -- from the world of "you may have x, but x does not have you" thinking about the transition into disability. She writes:
First, as a dancer -- no, to be a dancer -- you don't need to be able to stand up and dance. Other posts from Ms. Noble Topf suggest that she uses both a wheelchair and a scooter. You can dance in either or both of these. You can dance seated from a regular chair. You can dance with your eyes and dance with your tongue. This is what I know both as a professional dancer and as someone who occasionally goes to the legendary Society For Disability Studies conference dance. Dancing is not about the body parts. It is about how we express and communicate in movement. It won't look the same; it won't feel the same. It definitely is dancing.
You do not have to "stand" aside and watch your love dance with someone else. You do not have to experience the discomfort and jealousy that this might cause. Dancing disabled does not prevent your dance partner from moving as fully as possible. Dancing disabled is possible, pleasurable, amazing, and... and it does not inhibit or prevent the experience of others.
OK. Part one of the rant done. I needed to say that -- to get it out of the way. But this is not really what I want to say about Ms. Noble Topf's post. As much as I disagree with the author, her essay makes a tremendous and deeply saddening kind of sense to me. It's another expression of that ugly post-show comment. Ms. Noble Topf's essay participates in that very same tradition of defining disability as a lack of physical ability. But, and this is what interests me, she goes on to talk about what happens thereafter.
The "here and now" is of the encounter -- that moment when a microaggression happens (more on that here if you're not sure what that is). The "thereafter" is what we have to live with. Ms. Noble Topf continues:
I need to take this sentence by sentence.
I agree firmly with the horror of defining identity by job or accomplishments. It's so often socially boring to listen to someone who does this, and I try my best not to be the same. (Though, of course, I have the space of a whole blog to get this part of me out of the way.) But I see in this claim a particularly risky disability statement. For those of us with acquired disability, there is a risk of staying in the moment of transition and the moment of loss. For all of us, disabled and non; our bodies change. Some things we get back; others we don't. We cannot stay in the moment of all that we did and now cannot do. And I know people who talk about everything they were, everything they did -- and who seem stuck there. They do not/cannot move through to the new part of life easily.
Further, there is absolute value in being proud of accomplishments. Being able to dress yourself by yourself (not that that should be a publicly welcomed standard... nothing wrong with assistance, and independence ain't all it's made out to be) might represent a lot of work, a lot of rehab, a lot of effort on a given day. There is nothing wrong with recognizing it, claiming it, owning it. This is part of your physical life. It does take work to do these things. We cannot assume that these things just happen; they don't. And if you consistently pass over the physical realities of your life, you miss out on living in your embodied self. You miss out on integrating that embodiment into your identity.
That's dangerous. Because the public wishes to erase your embodied difference from social, political, and cultural spaces -- from the very public imagination -- your embodied self is under siege. Constantly. If you don't claim it, no one will. We have to love our physical doings, yes. But even more, we have to love our physical beings. And that is difficulty of Ms. Noble Topf's piece. Because of her implicit analysis of disability as lack or loss, Ms. Noble Topf's article does not allow for a positive embodied physical reality. Instead, she urges transitioning beyond the body to the spirit.
This is, of course, on par for a number of religious/spiritual traditions. No one really likes the body. As disabled people whose bodies are already subject to encounters of repulsion, abjection, horrible public policy, unwanted religious blessings, prayers for cures, .... erasure in so many ways at such high costs, can we be different? Can we practice whatever spirituality calls to us and keep our bodies? Can we hold and live publicly in our bodies? And can we take pride in our bodies, our physicalities, and our accomplishments without being accused of any number of the Christian cardinal sins (lust, gluttony, greed, sloth, anger, envy, pride)?
We don't have to withdraw from society and life to participate fully. I cannot support that claim. No, we should place ourselves in society -- in life -- as much as we are able. It is too easy, if we withdraw. We endanger ourselves and others if we withdraw. If we take ourselves and our bodies out of the picture, someone else will prevent us from being photoshopped back in. As hard as it is, as ugly and painful as it is, will you please live a publicly embodied life?
NB: Public does not mean being outside in the world, being political, protesting, etc. It can mean talking to your friends, blogging, taking pictures, being on the phone .... Limitless.
Her comments struck me deeply; I was in post-show vulnerable mode. This is why I hate talkbacks and "q and a" sessions; they just give people a chance to say a well-meant utterly horrible thing. It's taken a while to think about this. I'm sure she didn't actually mean that literally. Well, OK; I'm not quite sure, but I am hoping that she didn't actually mean that. For that to be true, she would have had to have read my disability as a sap that helps me pay for the sins I have committed -- specifically, disability is the counterweight to my pride, a payback for my happiness and pride in my achievements. Disability stops me. I don't quite believe she meant that, but I do think there's a real thing to be understood in her comments.
Too often, because disability is understood as a lack or failing -- as a pitiable position of weakness (if not revulsion) -- it is easy to understand disability as a punishment, humbling, or just deserts. It is virtually impossible in this Christian inflected, North American culture for people to understand disability as anything much other than a metaphor or signifier; it is not an embodied reality. It is never neutral.
This encounter resonated hard for me while I was reading a personal blog/opinion-y piece in the Huffington Post. It's one of a personal series of reflections by a disabled writer and speaker, Linda Noble Topf. Noble Topf is a motivational speaker and writer -- from the world of "you may have x, but x does not have you" thinking about the transition into disability. She writes:
Sometimes, we find our greatest lessons when we must let go of something that has particularly brought us pleasure in the past. For example, Michael and I used to enjoy dancing. We were so good on the dance floor together! It was really our joy. But there came a time when I was unable to stand without a cane, much less dance.
One night, we were at a party where people were dancing, and I nudged Michael and said, "Go ask Sheryl to dance." Now Sheryl is a great dancer. She is beautiful. She is wonderful. I had no idea how well she danced until that evening. I watched Michael and her glide and flow across the dance floor with the soulful music, just as we used to do so many years ago.
First, as a dancer -- no, to be a dancer -- you don't need to be able to stand up and dance. Other posts from Ms. Noble Topf suggest that she uses both a wheelchair and a scooter. You can dance in either or both of these. You can dance seated from a regular chair. You can dance with your eyes and dance with your tongue. This is what I know both as a professional dancer and as someone who occasionally goes to the legendary Society For Disability Studies conference dance. Dancing is not about the body parts. It is about how we express and communicate in movement. It won't look the same; it won't feel the same. It definitely is dancing.
You do not have to "stand" aside and watch your love dance with someone else. You do not have to experience the discomfort and jealousy that this might cause. Dancing disabled does not prevent your dance partner from moving as fully as possible. Dancing disabled is possible, pleasurable, amazing, and... and it does not inhibit or prevent the experience of others.
OK. Part one of the rant done. I needed to say that -- to get it out of the way. But this is not really what I want to say about Ms. Noble Topf's post. As much as I disagree with the author, her essay makes a tremendous and deeply saddening kind of sense to me. It's another expression of that ugly post-show comment. Ms. Noble Topf's essay participates in that very same tradition of defining disability as a lack of physical ability. But, and this is what interests me, she goes on to talk about what happens thereafter.
The "here and now" is of the encounter -- that moment when a microaggression happens (more on that here if you're not sure what that is). The "thereafter" is what we have to live with. Ms. Noble Topf continues:
As I confronted the fact that I had defined my identity with my accomplishments, activities that I've physically done -- dancing, painting, dressing myself, or whatever -- my previous investment in the physical doing began to melt away. And as it did, I discovered something beyond it. What I began to see was that my measure of worth did not need to be wrapped up in my actions or physical accomplishments.
I saw that there clearly is a way that we participate in life that is quite beyond that. The breakthrough I experienced that evening was: As we give up our physical attachments, we uncover our authentic, true spiritual self. And this seems to happen even for those who, like me, never thought of themselves as spiritual before.
I need to take this sentence by sentence.
I agree firmly with the horror of defining identity by job or accomplishments. It's so often socially boring to listen to someone who does this, and I try my best not to be the same. (Though, of course, I have the space of a whole blog to get this part of me out of the way.) But I see in this claim a particularly risky disability statement. For those of us with acquired disability, there is a risk of staying in the moment of transition and the moment of loss. For all of us, disabled and non; our bodies change. Some things we get back; others we don't. We cannot stay in the moment of all that we did and now cannot do. And I know people who talk about everything they were, everything they did -- and who seem stuck there. They do not/cannot move through to the new part of life easily.
Further, there is absolute value in being proud of accomplishments. Being able to dress yourself by yourself (not that that should be a publicly welcomed standard... nothing wrong with assistance, and independence ain't all it's made out to be) might represent a lot of work, a lot of rehab, a lot of effort on a given day. There is nothing wrong with recognizing it, claiming it, owning it. This is part of your physical life. It does take work to do these things. We cannot assume that these things just happen; they don't. And if you consistently pass over the physical realities of your life, you miss out on living in your embodied self. You miss out on integrating that embodiment into your identity.
That's dangerous. Because the public wishes to erase your embodied difference from social, political, and cultural spaces -- from the very public imagination -- your embodied self is under siege. Constantly. If you don't claim it, no one will. We have to love our physical doings, yes. But even more, we have to love our physical beings. And that is difficulty of Ms. Noble Topf's piece. Because of her implicit analysis of disability as lack or loss, Ms. Noble Topf's article does not allow for a positive embodied physical reality. Instead, she urges transitioning beyond the body to the spirit.
This is, of course, on par for a number of religious/spiritual traditions. No one really likes the body. As disabled people whose bodies are already subject to encounters of repulsion, abjection, horrible public policy, unwanted religious blessings, prayers for cures, .... erasure in so many ways at such high costs, can we be different? Can we practice whatever spirituality calls to us and keep our bodies? Can we hold and live publicly in our bodies? And can we take pride in our bodies, our physicalities, and our accomplishments without being accused of any number of the Christian cardinal sins (lust, gluttony, greed, sloth, anger, envy, pride)?
We don't have to withdraw from society and life to participate fully. I cannot support that claim. No, we should place ourselves in society -- in life -- as much as we are able. It is too easy, if we withdraw. We endanger ourselves and others if we withdraw. If we take ourselves and our bodies out of the picture, someone else will prevent us from being photoshopped back in. As hard as it is, as ugly and painful as it is, will you please live a publicly embodied life?
NB: Public does not mean being outside in the world, being political, protesting, etc. It can mean talking to your friends, blogging, taking pictures, being on the phone .... Limitless.
Thursday, May 2, 2013
Mandatory Elevator Conversation
Man with a dog: Can I tell you something about this little dog?
[Eyes tear up]
MWAD: He was completely paralyzed.
WCD: Sigh
[Eyes roll]
MWAD (oblivious): He was just paralyzed. And you know? He was happy in his wheelchair? He had a little wheelchair. He would go ....
WCD (interrupting): He was happy? Funny that.
MWAD (looks at WCD questioningly; he receives no response, so he continues): He would go around in his wheelchair and he was happy, you know? And ...
[Stops, looks at WCD waiting for confirmation or for conversational prompt to continue. None is forthcoming.]
MWAD: He came back, you know? Look at him? He came back? And ...
WCD (interrupting again): Well, at least you kept him alive.
MWAD: Oh no. I wouldn't want to hurt this little guy. He came back. And now, whether he's in his wheelchair or just walking around, he's happy!
[They leave the elevator together. MWAD blocks WCD, thereby preventing her from running off and escaping this awful conversation. He sniffles at his memory.]
MWAD: You have a good day.
WCD
[Looks at the sky.]
[Eyes tear up]
MWAD: He was completely paralyzed.
WCD: Sigh
[Eyes roll]
MWAD (oblivious): He was just paralyzed. And you know? He was happy in his wheelchair? He had a little wheelchair. He would go ....
WCD (interrupting): He was happy? Funny that.
MWAD (looks at WCD questioningly; he receives no response, so he continues): He would go around in his wheelchair and he was happy, you know? And ...
[Stops, looks at WCD waiting for confirmation or for conversational prompt to continue. None is forthcoming.]
MWAD: He came back, you know? Look at him? He came back? And ...
WCD (interrupting again): Well, at least you kept him alive.
MWAD: Oh no. I wouldn't want to hurt this little guy. He came back. And now, whether he's in his wheelchair or just walking around, he's happy!
[They leave the elevator together. MWAD blocks WCD, thereby preventing her from running off and escaping this awful conversation. He sniffles at his memory.]
MWAD: You have a good day.
WCD
[Looks at the sky.]
Wednesday, May 1, 2013
Just When You Think
I want to be writing about principles and concepts, but actually, I'm going to be writing personally. There are a number of disability anniversaries in my life: when symptoms started, when I first started to use canes, crutches, a wheelchair, when I became a mostly full time wheeler, when I became a less full time wheeler, when I started to dance, when I started blogging .... Disability has been present in my life since September, 2000 (though I don't always count it from there). So, you'd think the brain would have adjusted by now, right? You would think that the emotions would have adapted by now, right?
Since I am writing this post, you have of course guessed that "right" is more ... "wrong." Or perhaps more complicated would be better.
I was in the tub two nights ago, awash with feelings of unfairness. Of it wasn't supposed to be like this. Of this is not me. Of surprise. Distance. Sadness. And anger. It really wasn't supposed to be like this -- not for me, at any rate. It's not that I thought that I was special or different; I didn't really have an idea of what it *was* supposed to be like. My life is good; happier; better even than it was before. No, I don't subscribe to that "blessing in disguise"/silver lining shit. My life brings me more happiness now than it did then. It's fuller. Perhaps even more meaningful in a social justice/artsy kind of way. And yet. Some have said that I have it better than many -- true, by many measures, but not a terribly useful and perhaps quite unhelpful in many contexts kind of thing. So, what was this, this feeling, all of a sudden? Regret or nostalgia for a life that never was?
I've written so stridently here about the importance of change, acceptance, and moving through and with. I'm the last person I would have expected to find myself right here.
And yet.
In the colder light of day without the nourishing warm water, I wonder if these feelings are my own internalized ableism; they could be just a resurgence of the usual grieving adaptation process. I don't really feel inclined to judge. They are certainly a reminder of how the process is continuous.
Since I am writing this post, you have of course guessed that "right" is more ... "wrong." Or perhaps more complicated would be better.
I was in the tub two nights ago, awash with feelings of unfairness. Of it wasn't supposed to be like this. Of this is not me. Of surprise. Distance. Sadness. And anger. It really wasn't supposed to be like this -- not for me, at any rate. It's not that I thought that I was special or different; I didn't really have an idea of what it *was* supposed to be like. My life is good; happier; better even than it was before. No, I don't subscribe to that "blessing in disguise"/silver lining shit. My life brings me more happiness now than it did then. It's fuller. Perhaps even more meaningful in a social justice/artsy kind of way. And yet. Some have said that I have it better than many -- true, by many measures, but not a terribly useful and perhaps quite unhelpful in many contexts kind of thing. So, what was this, this feeling, all of a sudden? Regret or nostalgia for a life that never was?
I've written so stridently here about the importance of change, acceptance, and moving through and with. I'm the last person I would have expected to find myself right here.
And yet.
In the colder light of day without the nourishing warm water, I wonder if these feelings are my own internalized ableism; they could be just a resurgence of the usual grieving adaptation process. I don't really feel inclined to judge. They are certainly a reminder of how the process is continuous.
Monday, April 29, 2013
It's Not About Condition Or State
I've been dancing a lot; I'm tired today. I was doing a spot of unexpected performing and touring. The work is utterly rewarding. For each show, I feel that we create some magical universe; I'm changed by each performance. Every time the lights go up, I feel a deep responsibility to the upcoming work and to the people I'm dancing with on stage. This is a deeply intimate way to live.
How does disability figure here? It's everything. It's why and how I came to the stage. It's what keeps me on stage. It's what enables me to dance.
Outside this world, however, disability resonates so differently in the world. Surrounded and protected by the lights, my disabled body and self are treasured. In the real world, my very choice to use "disability" as an identifying term is questioned. In encounter after encounter, I hear people reject "disability" as a word to describe themselves, and I hear others repeatedly tell me that I am not disabled. In all these cases, the encounter is never about the state of the body. Yes, I know. It's usually about the body -- bodies are the way it manifests in these encounters for me. And bodies are the way it manifests as a dancer. So, I'm going to hang here for a second.
In these encounters, it's never about the body. Despite what the speaker says. It's never actually about what I can or cannot do. What someone with my "condition" should or should not be able to do. It is always -- and I do mean always -- about what the body means, and what the speaker thinks bodies can and should be able to do. That is, it is not about the facts of physicality; it's about society, culture, meaning.
I recognize that I am out of "step" with the way the majority of the world thinks about these kinds of things, but I feel strongly about advocating for a different notion of disability. One where disability is not contrasted with "ability." Where the "dis" of disability and the "can do" of ability matter not. More on that tomorrow.
How does disability figure here? It's everything. It's why and how I came to the stage. It's what keeps me on stage. It's what enables me to dance.
Outside this world, however, disability resonates so differently in the world. Surrounded and protected by the lights, my disabled body and self are treasured. In the real world, my very choice to use "disability" as an identifying term is questioned. In encounter after encounter, I hear people reject "disability" as a word to describe themselves, and I hear others repeatedly tell me that I am not disabled. In all these cases, the encounter is never about the state of the body. Yes, I know. It's usually about the body -- bodies are the way it manifests in these encounters for me. And bodies are the way it manifests as a dancer. So, I'm going to hang here for a second.
In these encounters, it's never about the body. Despite what the speaker says. It's never actually about what I can or cannot do. What someone with my "condition" should or should not be able to do. It is always -- and I do mean always -- about what the body means, and what the speaker thinks bodies can and should be able to do. That is, it is not about the facts of physicality; it's about society, culture, meaning.
I recognize that I am out of "step" with the way the majority of the world thinks about these kinds of things, but I feel strongly about advocating for a different notion of disability. One where disability is not contrasted with "ability." Where the "dis" of disability and the "can do" of ability matter not. More on that tomorrow.
Sunday, April 21, 2013
Stage
I'm in a moment of respite, hidden between two moments of really intense dancing and really awkward and intense travel. Today is mine. To breathe. Swim. Eat. And, with luck, sleep. In the meantime, I've been thinking about the stage and about home. This post is about the stage -- which I've come to think of as a kind of home. The home of the stage is where I feel most grounded. Most alive and most unquestionably at peace with myself and the world. The stage is the most "real" place that I live.
We tend to think of the "stage" as in many ways unreal or artificial. It's in our everyday language as we think about "staging" this, that or the other. Stage is where you present the unreal. It's set up, managed, often squirreled away from the street (notice how "street theater" is specially designated?). Stage is distinct from life; it's a place where you can present and examine the unthinkable, impermissible, and taboo. Once you are in the theater, we can talk about "breaking the fourth wall," the thing that separates performance from audience, real from staged, audience from performers and house from stage.
I've come to understand this separation as mostly being an outsider perspective -- that is, one that does not immediately take into account what to me is the most critical experience of being a performer. The stage is special; there's no doubt about that. There's something about being "called to the stage" that asks you to collect yourself and prepare for the journey that is ahead. But that journey -- the reality of performance -- is not necessarily one of artificiality. I would say that stage -- unlike the disability theater of everyday life -- the space where life, *I*, am most real. Not just surreal. Not even hyper-real. But perhaps intensely, acutely real. There is nothing about the stage that is artificial; it is the place where I understand who we are and can be as humans.
Perhaps oddly to you, the reality I want to talk about is not the reality of what I am performing for you. If I am in a role or part that has some emotional value -- love, anger, fear, sadness -- my reality is not necessarily what you see. My reality is of the experience of producing/creating what you see. In that moment, my reality is about my relationships and connections to the other dancers on stage. It is about how my body is feeling, my control over my body, the condition of the stage floor, the sweat on my body, the effort, the slipping of my costume, the ... you get the picture. This reality is so vulnerable. I am so vulnerable. The lights, the passion, the fear, the trust. This is humanity. This is an experience unlike any other.
Performing creates a high; I've written about that. And I've also talked a little about how it feels to come down from the stage. Being in this state of performance intensifies both the best and worst of our daily experience. Every movement matters so intensely: every push, every finger, every stroke of the wheel, every breath. That is the reality of the stage, and that is the reality of my home from home.
Tuesday, April 16, 2013
Charity and Justice
These days, it's supposed to be easy. Watching Hulu? No problem, just text whatever number comes up in an ad, and boom! Before the next segment begins, you will have given to stop some poor child in Africa from dying. Or perhaps, it's a New Yorker who is starving. Or perhaps. ... Who knows who is advertising? Who knows whether they are responsible people or organizations? Who knows if this is a scam or a fraud? Where does the money go? What about the people? Persistent pictures pleading for pity dehumanize their subjects. Doesn't matter. They are "victims," not, of course, of the media's campaigns, but of their circumstances, of each other, of tragedy, disaster ....
We almost never see behind the scenes and, if you aren't looking, it's easy not to focus a sharp lens. The pitch is slick. It's a thirty second break. You don't want to have to work hard at it; charity is to be as reflexive as texting a friend about coffee. It takes more work to make the damn coffee.
Every arts organization, dance company, not-for-profit I've ever had remote contact with wants money. So do the local libraries, the theaters I've been in recently, the pool I swim in -- everyone wants money.
This is the ultimate NPR effect. If you want a resource or believe in a resource, pay for it. The liberal side of Bush's compassionate conservatism -- one where we give to compensate for the structural injustices of the world and then feel better. After all, what can go wrong if we give?
Giving is important; we should all do it. Often. But. And.
Charity is no substitute for justice withheld. (Supposedly, this is Augustine, but ...)
As we move more and more into the age of KickStarter, Indiegogo, crowd sourcing, we create a world in which we depend more and more on private giving. Perhaps that is OK for enterprise and innovation. But it's not OK for the arts, and it is not OK for not-for profits. It is not all right to assume that people will just step up if the project is good enough or worthy enough or, worse, if the people are deserving enough. By participating in these campaigns, we may fund a friend's project. Or even support a cool idea. But we make also make the whole thing worse. It's a long term-short term thing.
We almost never see behind the scenes and, if you aren't looking, it's easy not to focus a sharp lens. The pitch is slick. It's a thirty second break. You don't want to have to work hard at it; charity is to be as reflexive as texting a friend about coffee. It takes more work to make the damn coffee.
Every arts organization, dance company, not-for-profit I've ever had remote contact with wants money. So do the local libraries, the theaters I've been in recently, the pool I swim in -- everyone wants money.
This is the ultimate NPR effect. If you want a resource or believe in a resource, pay for it. The liberal side of Bush's compassionate conservatism -- one where we give to compensate for the structural injustices of the world and then feel better. After all, what can go wrong if we give?
Giving is important; we should all do it. Often. But. And.
Charity is no substitute for justice withheld. (Supposedly, this is Augustine, but ...)
As we move more and more into the age of KickStarter, Indiegogo, crowd sourcing, we create a world in which we depend more and more on private giving. Perhaps that is OK for enterprise and innovation. But it's not OK for the arts, and it is not OK for not-for profits. It is not all right to assume that people will just step up if the project is good enough or worthy enough or, worse, if the people are deserving enough. By participating in these campaigns, we may fund a friend's project. Or even support a cool idea. But we make also make the whole thing worse. It's a long term-short term thing.
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