Thursday, August 26, 2010
Thank You Thoughts
To the guy who washed my car as a gift. You know who you are, but I don't know if you read here. I was deep in rehearsal; in fact, we've been deep in a new process for around ten days. I'm tired and so worn out that I've been unable to do more than eat, sleep, shower, and dance. My car has been lived in, almost literally, and I haven't washed it since May. I came out of an exhausting rehearsal and there she was. Clean, fresh, detailed beyond what I usually do for her. Your gift made me smile and feel proud to drive home. I felt in community with you and the people around the West Coast studio. That made me feel welcome.
Saturday, August 21, 2010
Body Matters, Edges, and Disability
This one is to clear up some misunderstandings that have begun to grow over the course of the past couple of posts. Some of you have written privately, and some of you have left comments. I hope that this post gets to all of the issues you have raised.
First: pain, complaining, and what my friend calls "membership in the gimp club." In the post that seems to have started it all, I discussed a feeling that I was having. I talked about being rubbed raw in such a way that I noticed myself having an impulse to cross an unacceptable line. My feelings were coming from being in a situation in which I was not able to make the kind of distinctions necessary to explain to people how and why comments such as "we're all a little bit disabled" trivialize the actual experience of disability and make it difficult to understand disability in a variety of public contexts.
We all experience limitations and restrictions. Not all of those -- like not being able to speak a second language -- are disabilities. The second language example is a true comment, and I would have thought that it was a pretty obviously bad comparison. But it and other similar remarks kept coming up. In addition to those comments, I was also thinking about a second order of experience: the kind where someone claimed kinship/commonality/knowing what I am going through on the basis of their limiting, but non-disabling experience. I'm referring to the kind of thing like, for example, comparisons of feeling tired from having flu and the tiredness in chronic fatigue syndromes or, say, multiple sclerosis. A second example is that feeling sad or disappointed is not the same as the emotion of depression.
In my circumstances, I was facing a lack of awareness around the topic of physical disability. Knee, shoulder, ankle, and back injuries may keep one from dancing with the same freedom as one had before the injury, but they usually aren't disabling. Yes, I know, they *can* be. But I was in a 2 week long dance workshop; people there weren't disabled; they were experiencing limitations and changed embodiment. Some of them had lingering effects outside the dance studio, but mostly these were changes that affected the way the dancers moved as dancers. Not the same thing at all.
Claiming that we were on the same page was a way of bridging social awkwardness, but it took more from me than I was able to give. As I said, I was rubbed raw over the course of a week with no way of speaking up. My post was about how I felt -- not whether people had a right to complain/mourn/grieve/discuss the changes in their bodies. They do. But they don't have a right to assume the predominance of their experience as the totality of disability experience. And it was the repeated erasure of my own experience that had me ready to blow a fuse. (More on disability policing below.)
And then I got to thinking. There are a lot of these stories out there. And a lot of people in the blogosphere write of their frustration when dealing with similar happenings. Where do these things fit together? What is it about these stories that make people want to tell them to disabled people as a way of claiming kinship? How do these stories influence our understanding of disability? How does it feel to be on the other end?
A definition: by "these stories," I mean the narratives people tell of a period of incapacity, vulnerability, limitation and/or restriction, told to a disabled person, as a way of building commonality or of reinforcing social norms by proving either that disability isn't so bad or that everyone has something to deal with and that the disabled person shouldn't make a fuss. The story teller does not usually identify as disabled or claim disability in any other context.
A principle: I have no problem with narratives of illness and or injury in themselves. The body has a story to tell; it will be heard -- be that story one of illness, injury, or disablement.
I have a problem with what people do with that story. And I don't understand, as I said, "how we get from the individual experience of pain and fear to the systems of social oppression and inaccessibility that dominate our daily interactions with each other." I want to get at some generalities that help me understand the phenomenon.
My second post, motivated by an odd encounter, was about "about how we imagine living in other people's bodies and the value we ascribe to them; it's also about how we pass on the fear and vulnerability of change, injury, or pain in our own physicality."
I adopted "back stuff" as the topic, because back stuff, like disability, can run a full continuum. The same diagnosis can affect two people very differently. And because similar impairment to the same parts of the body (spine and spinal cord) are read differently in society.
I wrote: "Whatever the reason (and to be honest, I don't care), I do know that one set of back impairments allows the person to retain social value and capital -- even if they aren't working -- while another strips away humanity and leaves the person vulnerable to all kinds of prejudice and stereotyping."
@lauredhel wrote: "I'm not sure that back injuries are a great example of impairments that lead the person to maintain social capital and escape prejudice. In Australia at least, people with 'bad backs' are constantly called whingers and bludgers and told they're faking it, both in general society and in the medical and OH&S world. There is also a rather large scientific-industrial complex devoted to labelling inability to work due to back pain 'psychosomatic' in order to deny benefits."
Mmm. Yes, I actually did have that in mind, but didn't tie up the loose thread in the writing. I wanted to move on to the difficulties created by comparing actual complexity of embodiment and impairment and then ditch that for social and cultural stuff, but I didn't come back. I should have completed the thought by saying something like, "And then again, in certain contexts, the very same impairment ..... This denial of disablement leads me to want to stop comparing the body as a primary marker of disability outside employment, legal, medical contexts and look at culture, politics, and identification."
The back is so important to us because of the socio-cultural fear of paralysis (some of you sent me this link to a story about a Saudi judge considering severing a spinal cord as punishment) and because of the deeply entrenched socio, medico economic discourse of back injuries as dollars lost by fakers. Working with something that was subject to such diverse interpretation seemed like a good (if incompletely executed/thought through) idea.
@Elizabeth McClung (EFM), Rose, and Loveable Homebody (in comments) get into another difficult point: the disability police. @loveable_homebody wrote: It seems you've taken the role of policing who does and who doesn't get to claim suffering and who does and doesn't have the right to claim "membership in a group of people who experience prejudice, oppression, discrimination, higher rates of unemployment, violence, ... and, on the good side, a wild, wonderful history and culture."
I wrote two difficult things: "Let me say it now: Your injury, pain, etc., may cause you all kinds of physical limitations and restrictions, but despite your discomfort and vulnerability, they very often do not rise to the level of disability."
And: "Unless your impairment places you in my world and you claim my history and culture as yours, do not think you know what I am going through. We may share similar manifestations, even take similar medications ... but medical complexity is not the primary way I build community and recognize allies and friends. You can have your pain and I will support you in your experience, but, please, recognize the difference."
The first. In both posts, I explicitly stated that people have a right to their experience and that I would support them in it. I also stated that not all experience is equal: there is a difference between the tiredness of flu and the fatigue of chronic fatigue syndromes. There is a difference between a back injury that will heal more or less completely and a complete spinal cord injury. People on both sides will experience all kinds of pain, suffering, fear, vulnerability, but they are different physical experiences. And, on top of that, only one comes with increased exposure and negative social stereotyping, issues with access....
The second: This is a consequence of the first and of the difficulty of drawing those lines. When, exactly, does your back injury become a disability? Under what terms? Which set of criteria? I'm not a gatekeeper who has to make a decision about whether someone is or isn't disabled and then deny them access to crucial resources on the basis of that decision. My calculus is more simple: are you in my world? Do you claim disability history and culture as yours? If you do, I will be able to recognize you as a friend/ally/other disabled person. And if you are, do, and have, I am willing to believe you have some idea of what I am going through.
NOTE: This is not about the body. I believe there are people with similar medical embodiments who do know my experience and there are people who don't. It's not about the body. You can have a very different embodiment and totally get what I am saying -- because you have an understanding of disability history, culture, and rights, etc. It's not about embodiment.
Acknowledging first that some bodies require more care and have more complex relations to their surroundings and second that the medical, legal, political, labor, etc., etc., definitions of disability will always be present in any discussion, I still choose disability history and culture as the way I build community and recognize allies and friends. That's a personal decision that reflects my take on disability politics, history and community. It gets me out of the business of comparing severity of impairment. It doesn't stop anyone from choosing and/or discovering where they are in the disability world. It does describe how I find and create communities around me. It describes what I ask of people who wish to build commonality with me.
It's somewhat ironic to be having this conversation. Back in 2006, there was a blog flare up that started here, with someone stating that I didn't meet his criteria for disability. As a wheelchair user who can walk and who doesn't have a diagnosis, his take on my experience was that I am a pretender. For a while, there were emails, comments, and posts on a variety of disability messageboards warning people to stay clear. It was a horrible experience. I wouldn't wish it on a soul.
Comments are open -- but as some of the personal communications have been less than polite, I will not be publishing the ones that are nasty. Genuine criticism and engagement are all good, but personal comments and accusations.... not so much.
First: pain, complaining, and what my friend calls "membership in the gimp club." In the post that seems to have started it all, I discussed a feeling that I was having. I talked about being rubbed raw in such a way that I noticed myself having an impulse to cross an unacceptable line. My feelings were coming from being in a situation in which I was not able to make the kind of distinctions necessary to explain to people how and why comments such as "we're all a little bit disabled" trivialize the actual experience of disability and make it difficult to understand disability in a variety of public contexts.
We all experience limitations and restrictions. Not all of those -- like not being able to speak a second language -- are disabilities. The second language example is a true comment, and I would have thought that it was a pretty obviously bad comparison. But it and other similar remarks kept coming up. In addition to those comments, I was also thinking about a second order of experience: the kind where someone claimed kinship/commonality/knowing what I am going through on the basis of their limiting, but non-disabling experience. I'm referring to the kind of thing like, for example, comparisons of feeling tired from having flu and the tiredness in chronic fatigue syndromes or, say, multiple sclerosis. A second example is that feeling sad or disappointed is not the same as the emotion of depression.
In my circumstances, I was facing a lack of awareness around the topic of physical disability. Knee, shoulder, ankle, and back injuries may keep one from dancing with the same freedom as one had before the injury, but they usually aren't disabling. Yes, I know, they *can* be. But I was in a 2 week long dance workshop; people there weren't disabled; they were experiencing limitations and changed embodiment. Some of them had lingering effects outside the dance studio, but mostly these were changes that affected the way the dancers moved as dancers. Not the same thing at all.
Claiming that we were on the same page was a way of bridging social awkwardness, but it took more from me than I was able to give. As I said, I was rubbed raw over the course of a week with no way of speaking up. My post was about how I felt -- not whether people had a right to complain/mourn/grieve/discuss the changes in their bodies. They do. But they don't have a right to assume the predominance of their experience as the totality of disability experience. And it was the repeated erasure of my own experience that had me ready to blow a fuse. (More on disability policing below.)
And then I got to thinking. There are a lot of these stories out there. And a lot of people in the blogosphere write of their frustration when dealing with similar happenings. Where do these things fit together? What is it about these stories that make people want to tell them to disabled people as a way of claiming kinship? How do these stories influence our understanding of disability? How does it feel to be on the other end?
A definition: by "these stories," I mean the narratives people tell of a period of incapacity, vulnerability, limitation and/or restriction, told to a disabled person, as a way of building commonality or of reinforcing social norms by proving either that disability isn't so bad or that everyone has something to deal with and that the disabled person shouldn't make a fuss. The story teller does not usually identify as disabled or claim disability in any other context.
A principle: I have no problem with narratives of illness and or injury in themselves. The body has a story to tell; it will be heard -- be that story one of illness, injury, or disablement.
I have a problem with what people do with that story. And I don't understand, as I said, "how we get from the individual experience of pain and fear to the systems of social oppression and inaccessibility that dominate our daily interactions with each other." I want to get at some generalities that help me understand the phenomenon.
My second post, motivated by an odd encounter, was about "about how we imagine living in other people's bodies and the value we ascribe to them; it's also about how we pass on the fear and vulnerability of change, injury, or pain in our own physicality."
I adopted "back stuff" as the topic, because back stuff, like disability, can run a full continuum. The same diagnosis can affect two people very differently. And because similar impairment to the same parts of the body (spine and spinal cord) are read differently in society.
I wrote: "Whatever the reason (and to be honest, I don't care), I do know that one set of back impairments allows the person to retain social value and capital -- even if they aren't working -- while another strips away humanity and leaves the person vulnerable to all kinds of prejudice and stereotyping."
@lauredhel wrote: "I'm not sure that back injuries are a great example of impairments that lead the person to maintain social capital and escape prejudice. In Australia at least, people with 'bad backs' are constantly called whingers and bludgers and told they're faking it, both in general society and in the medical and OH&S world. There is also a rather large scientific-industrial complex devoted to labelling inability to work due to back pain 'psychosomatic' in order to deny benefits."
Mmm. Yes, I actually did have that in mind, but didn't tie up the loose thread in the writing. I wanted to move on to the difficulties created by comparing actual complexity of embodiment and impairment and then ditch that for social and cultural stuff, but I didn't come back. I should have completed the thought by saying something like, "And then again, in certain contexts, the very same impairment ..... This denial of disablement leads me to want to stop comparing the body as a primary marker of disability outside employment, legal, medical contexts and look at culture, politics, and identification."
The back is so important to us because of the socio-cultural fear of paralysis (some of you sent me this link to a story about a Saudi judge considering severing a spinal cord as punishment) and because of the deeply entrenched socio, medico economic discourse of back injuries as dollars lost by fakers. Working with something that was subject to such diverse interpretation seemed like a good (if incompletely executed/thought through) idea.
@Elizabeth McClung (EFM), Rose, and Loveable Homebody (in comments) get into another difficult point: the disability police. @loveable_homebody wrote: It seems you've taken the role of policing who does and who doesn't get to claim suffering and who does and doesn't have the right to claim "membership in a group of people who experience prejudice, oppression, discrimination, higher rates of unemployment, violence, ... and, on the good side, a wild, wonderful history and culture."
I wrote two difficult things: "Let me say it now: Your injury, pain, etc., may cause you all kinds of physical limitations and restrictions, but despite your discomfort and vulnerability, they very often do not rise to the level of disability."
And: "Unless your impairment places you in my world and you claim my history and culture as yours, do not think you know what I am going through. We may share similar manifestations, even take similar medications ... but medical complexity is not the primary way I build community and recognize allies and friends. You can have your pain and I will support you in your experience, but, please, recognize the difference."
The first. In both posts, I explicitly stated that people have a right to their experience and that I would support them in it. I also stated that not all experience is equal: there is a difference between the tiredness of flu and the fatigue of chronic fatigue syndromes. There is a difference between a back injury that will heal more or less completely and a complete spinal cord injury. People on both sides will experience all kinds of pain, suffering, fear, vulnerability, but they are different physical experiences. And, on top of that, only one comes with increased exposure and negative social stereotyping, issues with access....
The second: This is a consequence of the first and of the difficulty of drawing those lines. When, exactly, does your back injury become a disability? Under what terms? Which set of criteria? I'm not a gatekeeper who has to make a decision about whether someone is or isn't disabled and then deny them access to crucial resources on the basis of that decision. My calculus is more simple: are you in my world? Do you claim disability history and culture as yours? If you do, I will be able to recognize you as a friend/ally/other disabled person. And if you are, do, and have, I am willing to believe you have some idea of what I am going through.
NOTE: This is not about the body. I believe there are people with similar medical embodiments who do know my experience and there are people who don't. It's not about the body. You can have a very different embodiment and totally get what I am saying -- because you have an understanding of disability history, culture, and rights, etc. It's not about embodiment.
Acknowledging first that some bodies require more care and have more complex relations to their surroundings and second that the medical, legal, political, labor, etc., etc., definitions of disability will always be present in any discussion, I still choose disability history and culture as the way I build community and recognize allies and friends. That's a personal decision that reflects my take on disability politics, history and community. It gets me out of the business of comparing severity of impairment. It doesn't stop anyone from choosing and/or discovering where they are in the disability world. It does describe how I find and create communities around me. It describes what I ask of people who wish to build commonality with me.
It's somewhat ironic to be having this conversation. Back in 2006, there was a blog flare up that started here, with someone stating that I didn't meet his criteria for disability. As a wheelchair user who can walk and who doesn't have a diagnosis, his take on my experience was that I am a pretender. For a while, there were emails, comments, and posts on a variety of disability messageboards warning people to stay clear. It was a horrible experience. I wouldn't wish it on a soul.
Comments are open -- but as some of the personal communications have been less than polite, I will not be publishing the ones that are nasty. Genuine criticism and engagement are all good, but personal comments and accusations.... not so much.
Thursday, August 19, 2010
on the edge
My most recent posts have touched a couple of edges.... thanks for staying engaged. I will respond -- especially about the "invisible" disability stuff.
But for the moment, a thought or two about a different edge -- your back. I wrote here about the spine, but now I want to think a little about the back. These are some of the questions that came up for me during rehearsal today. What exactly is a back? Where does it start? Does your wheelchair back count? Is it a perspective as much as a body part -- i.e., can you only sense your back? Is it something the audience sees and you feel as not your face or profile view? If only your back were dancing and/or if you were dancing only from your back or even dancing your back, what would I be seeing from the audience? How much muscle, how much bone? Where is muscle and where the bone? How much of your back is your chair and how much sticks up above it? You can have the back of your head, yes, but how much of your head and neck are part of your back?
How does your back like to move?
But for the moment, a thought or two about a different edge -- your back. I wrote here about the spine, but now I want to think a little about the back. These are some of the questions that came up for me during rehearsal today. What exactly is a back? Where does it start? Does your wheelchair back count? Is it a perspective as much as a body part -- i.e., can you only sense your back? Is it something the audience sees and you feel as not your face or profile view? If only your back were dancing and/or if you were dancing only from your back or even dancing your back, what would I be seeing from the audience? How much muscle, how much bone? Where is muscle and where the bone? How much of your back is your chair and how much sticks up above it? You can have the back of your head, yes, but how much of your head and neck are part of your back?
How does your back like to move?
Sunday, August 15, 2010
Body Matters
"It's nice to see you outside," the woman's voice said. I looked at her. She didn't seem familiar. And what did she mean ... how could she not have been seeing me outside? I was a little thrown, "I'm sorry. I don't recognize you with your sunglasses on..." "Oh," she chirped, "You don't recognize me at all."
This one is clearly a keeper in the "close encounters with the non-disabled kind" or "shit non-disabled people say" files. I keep a record of these misadventures as draft blog posts -- partly because writing is a useful decontaminant and partly because the stuff of these encounters is useful to me as a kind of local bellwether on the body and disability. This particular moment of interaction has stuck with me, because it's hooked up with some ideas I have about disability, the body, pain, and community. This kind of stuff is always on my mind, because on and off stage I am deeply concerned with socio-cultural understandings of the body.
My brief encounter goed straight to the difficult matrix of injury/illness chronic injury/illness, aging, and disability. It's about how we imagine living in other people's bodies and the value we ascribe to them; it's also about how we pass on the fear and vulnerability of change, injury, or pain in our own physicality. And that's just on a personal level; things get more complicated when we think of the body as a political space. Even as we individually struggle with the personal implications of our bodies, we are also aware of some of the intersections of personal physicalities and public policy.
An embodied life is neither easy nor simple. But embodied lives are what we have, and bodies have this tendency to be more vulnerable than we would wish. As a phrase, "embodied life" opens a necessary gap between body, self, and life. While I am politically for claiming an identification of body and self, it is sometimes useful to separate them in order to get at how we understand our bodies in society.
Here's what I mean. Bad backs can range from spinal cord injury, spinal cord degeneration, disk degeneration, disk injury, some combination of all of the above, soft tissue, a returning/chronic injury/pulled muscle, or short term injury. It's all about the spinal cord, the bone of the spine or the tissue surrounding it. The physical consequences of an injury to the spinal cord at, say, c-6 are different from those of a dessicating disk at l-4. Living with quadriplegia is nothing like living with soft tissue back pain; I wouldn't even begin to compare the relative levels of daily maintenance.
Yet people do. People simultaneously think that a back injury that keeps them from running a marathon or that gives them a common experience with someone who is disabled from, say, spinal cord injury. Let me say it now: Your injury, pain, etc., may cause you all kinds of physical limitations and restrictions, but despite your discomfort and vulnerability, they very often do not rise to the level of disability. I'm going to create some hot water for myself here, so bear with me.
Disability is often contextually defined. Disability for legal purposes is different from disability for SSI is different from ... you get the picture. This contextual set of definitions often run counter to our first thought -- that disability is a state of the body. It is, but often the medical definition of disability and the value and interpretation of disability in a variety of contexts are in tension with each other. Because of this complexity, I usually agree with the disability studies impairment/disability distinction. It works like this. The medical state of my body -- my impairment -- means that I use a wheelchair. But I am not disabled by either the fact of my wheelchair or the state of my body until I am unable to gain entry into a building because there is no ramp. Society and its attitudes are disabling, not the medical state of my body.
Comparing medical states of the body is not what I am talking about. The differences between the lived experience of primary progressive multiple sclerosis and the lived experience of a herniated disk seem to me obvious. And the comparison isn't productive -- no matter how bad the disk might be. I am talking about what our society makes of these two different bodies.
With regard to work, exercise, and life, a person with a "slipped disk" could easily be regarded as disabled. But our culture treats someone with this impairment very differently from someone with, say, spinal cord injury. And I don't know why. Perhaps, it is in the way the impairments are legible/visible to the external viewer. Perhaps, the difference lies in the possibly mistaken understanding that it is "just" a disk. Recovery is around the corner. Whatever the reason (and to be honest, I don't care), I do know that one set of back impairments allows the person to retain social value and capital -- even if they aren't working -- while another strips away humanity and leaves the person vulnerable to all kinds of prejudice and stereotyping.
And that is part of it for me. Regardless of their medical complexity, some impairments are just medical states, while others plunge their person into a membership in a group of people who experience prejudice, oppression, discrimination, higher rates of unemployment, violence, ... and, on the good side, a wild, wonderful history and culture. Some impairments, no matter how visible they are on the body, allow their person to continue to participate in society, while others leave their person vulnerable to such idiocy as the commentary of my stranger.
So, don't. Just don't. Unless your impairment places you in my world and you claim my history and culture as yours, do not think you know what I am going through. We may share similar manifestations, even take similar medications ... but medical complexity is not the primary way I build community and recognize allies and friends. You can have your pain and I will support you in your experience, but, please, recognize the difference.
And if that is you out there, bowling on up to disabled folk, congratulating us for being out, blessing us for being so inspirational, courageous, brave, whatever ... please, just don't. You know nothing of the complexities with which we do and do not live or even of the joys of our bodies. You are on autopilot, mindlessly reaffirming cultural fears and prejudices which, actually, we can do without. Shut up. Go away.
This one is clearly a keeper in the "close encounters with the non-disabled kind" or "shit non-disabled people say" files. I keep a record of these misadventures as draft blog posts -- partly because writing is a useful decontaminant and partly because the stuff of these encounters is useful to me as a kind of local bellwether on the body and disability. This particular moment of interaction has stuck with me, because it's hooked up with some ideas I have about disability, the body, pain, and community. This kind of stuff is always on my mind, because on and off stage I am deeply concerned with socio-cultural understandings of the body.
My brief encounter goed straight to the difficult matrix of injury/illness chronic injury/illness, aging, and disability. It's about how we imagine living in other people's bodies and the value we ascribe to them; it's also about how we pass on the fear and vulnerability of change, injury, or pain in our own physicality. And that's just on a personal level; things get more complicated when we think of the body as a political space. Even as we individually struggle with the personal implications of our bodies, we are also aware of some of the intersections of personal physicalities and public policy.
An embodied life is neither easy nor simple. But embodied lives are what we have, and bodies have this tendency to be more vulnerable than we would wish. As a phrase, "embodied life" opens a necessary gap between body, self, and life. While I am politically for claiming an identification of body and self, it is sometimes useful to separate them in order to get at how we understand our bodies in society.
Here's what I mean. Bad backs can range from spinal cord injury, spinal cord degeneration, disk degeneration, disk injury, some combination of all of the above, soft tissue, a returning/chronic injury/pulled muscle, or short term injury. It's all about the spinal cord, the bone of the spine or the tissue surrounding it. The physical consequences of an injury to the spinal cord at, say, c-6 are different from those of a dessicating disk at l-4. Living with quadriplegia is nothing like living with soft tissue back pain; I wouldn't even begin to compare the relative levels of daily maintenance.
Yet people do. People simultaneously think that a back injury that keeps them from running a marathon or that gives them a common experience with someone who is disabled from, say, spinal cord injury. Let me say it now: Your injury, pain, etc., may cause you all kinds of physical limitations and restrictions, but despite your discomfort and vulnerability, they very often do not rise to the level of disability. I'm going to create some hot water for myself here, so bear with me.
Disability is often contextually defined. Disability for legal purposes is different from disability for SSI is different from ... you get the picture. This contextual set of definitions often run counter to our first thought -- that disability is a state of the body. It is, but often the medical definition of disability and the value and interpretation of disability in a variety of contexts are in tension with each other. Because of this complexity, I usually agree with the disability studies impairment/disability distinction. It works like this. The medical state of my body -- my impairment -- means that I use a wheelchair. But I am not disabled by either the fact of my wheelchair or the state of my body until I am unable to gain entry into a building because there is no ramp. Society and its attitudes are disabling, not the medical state of my body.
Comparing medical states of the body is not what I am talking about. The differences between the lived experience of primary progressive multiple sclerosis and the lived experience of a herniated disk seem to me obvious. And the comparison isn't productive -- no matter how bad the disk might be. I am talking about what our society makes of these two different bodies.
With regard to work, exercise, and life, a person with a "slipped disk" could easily be regarded as disabled. But our culture treats someone with this impairment very differently from someone with, say, spinal cord injury. And I don't know why. Perhaps, it is in the way the impairments are legible/visible to the external viewer. Perhaps, the difference lies in the possibly mistaken understanding that it is "just" a disk. Recovery is around the corner. Whatever the reason (and to be honest, I don't care), I do know that one set of back impairments allows the person to retain social value and capital -- even if they aren't working -- while another strips away humanity and leaves the person vulnerable to all kinds of prejudice and stereotyping.
And that is part of it for me. Regardless of their medical complexity, some impairments are just medical states, while others plunge their person into a membership in a group of people who experience prejudice, oppression, discrimination, higher rates of unemployment, violence, ... and, on the good side, a wild, wonderful history and culture. Some impairments, no matter how visible they are on the body, allow their person to continue to participate in society, while others leave their person vulnerable to such idiocy as the commentary of my stranger.
So, don't. Just don't. Unless your impairment places you in my world and you claim my history and culture as yours, do not think you know what I am going through. We may share similar manifestations, even take similar medications ... but medical complexity is not the primary way I build community and recognize allies and friends. You can have your pain and I will support you in your experience, but, please, recognize the difference.
And if that is you out there, bowling on up to disabled folk, congratulating us for being out, blessing us for being so inspirational, courageous, brave, whatever ... please, just don't. You know nothing of the complexities with which we do and do not live or even of the joys of our bodies. You are on autopilot, mindlessly reaffirming cultural fears and prejudices which, actually, we can do without. Shut up. Go away.
Thursday, August 12, 2010
Weapons Scientists and Surgically Altered Actresses
You'd think they had nothing in common, right? You'd be wrong about that. But perhaps the only way to discover the connection is, as I did, to become an American citizen.
Dressed appropriately, the Wizard, a couple of friends and I shot off to an older, but nicely renovated small town theater to be naturalized (well, I did; they came to watch). And it was the experience of a lifetime. But perhaps not in the way a potential immigrant would expect. I was happy for the whole thing to be so multi-cultural -- information about voting in 5 languages, people of different races and cultures so alive and so visible -- but I was shocked by the images of America that pervaded the ceremony.
I'm not a great believer in ritual; I learned that ceremony doesn't always make the difference you think it should shortly after we were married. But I do believe that what we say and do in ritual and ceremony are key to understanding what we think about ourselves -- as people and as a culture. So, I was curious about what I would think and feel about being in a room, in a highly emotional situation, with a lot of people all doing and saying the same thing. I don't do group. It scares the *!@#* out of me. For a while, I wasn't even sure I would even say the required oaths aloud -- I don't say them for the country I was born in, so I wasn't clear on what would make me say them for a country I was choosing. (I did, though. Just this once. I even placed my hand over my heart, but I did not stand -- more on that later.)
I don't know how much you know about the process. But it's like being in a machine: 500 people in my ceremony, and they were doing three ceremonies on my day. I was very unaware. I won't say naive, because I guess I could have found out more, had I asked; I just didn't think to find out. I didn't even know who would be performing the ceremony or who else would be there. What would I have to do? These were questions to which I should have had answers, because as it was, I was unprepared.
The people being sworn in were separated from our families; we sat in rows according to some impenetrable system (whether or not we had a certain number of points on our application? people in our party? who knows?). I and the only other wheelchair user were placed at the back of the hall behind a wall over which I could barely see. I was prepared for it to be a multi-racial, multi-ethnic, multi-lingual gathering; I was curious about what the disability take would be.
Disability and immigration have a long history of something between uneasiness and rampant discrimination. At the moment, the ACLU has filed suit against the deportation and indefinite detention of people who are not able to understand the proceedings against them. Canada recently denied the immigration of a family, because one of the children was disabled (link to a summary of Canadian policy and the idea of disability as an "excessive demand" on the system). This link is to a post on my site about the quirks, disability and otherwise, of the N-400, the form you file to apply for naturalization.
As we waited to become American, a screen slideshow of iconic images of the US floated before us; the photographs, mainly of North-East coastal American and San Francisco, were accompanied by military music. This made sense: between the pictures of the Golden Gate Bridge, the Statue of Liberty, New England lighthouses and Mount Rushmore (no, not coastal), were pictures of America's troops, her planes, her ships, and her other paraphernalia of war. I was curious about the people in the pictures of immigrants of the past -- shown, of course, in huddled, downtrodden mass poses of people yearning to be free. What had happened to them? Where had they gone?
Mostly, though, I was surprised by the pictures chosen as representative of the country. So many politicians seem to refer to the mid-West and South as places of the average American, but there were no pictures of, as my friend put it, "waving wheat." No, the America pictured was both coastal and warlike. For some, the coasts are home to America's elite. And this made the conjunction of imagery somewhat incongruous. Do Washington, New York, and New England elites fight the country's wars?
I don't know how much standardization there is between ceremonies. Was mine an accident of location or are they all like this? Who conducts them? (An official from USCIS, it turns out). I worry about standardization because mine was totally chaotic. It's an awful thing to say. But it was totally chaotic. The officiator had not practised what he was going to say. So, he just talked; he wasn't the best of public speakers. I think he was aiming for inspirational, but he didn't have anything original or new to say. He rambled (he probably does a gazillion of these things and the awesome nature of the moment wears thin). When he opened it up to his counterpart, they joined in reading a list of notable Americans.
I have to admit. Many of the names read aloud were unfamiliar to me, so the effect is clearly a product of my ignorance. Nonetheless, the names that I recognized were either famous weapons scientists or actors. You can imagine my horror at, and I quote verbatim, the following string of names: Liam Neeson, Madeleine Albright, Pamela Anderson... Yes, you read that aright. My jaw hit the floor, and I missed the other names. I looked around; no one else seemed perturbed and the moment rolled by: these are notable Americans. And, in truth, I guess they are. After all, no one has heard of me; my name won't be read before thousands of people, eagerly anticipating the moment when they will become citizens of a great nation. Snobbery or not, I want to differentiate between the work of the first female Secretary of State and the work of an actress perhaps most famous for her body and personal life.
I was drawn back into the ceremony at the moment we were supposed to take the oath. We were called upon to stand; the other wheelchair user and I looked at each other. He winked; I rolled my eyes. He chortled and was shushed by his family. There was a roll-call of countries of origin; people had come from all over the world, including the USSR and also Russia. Unbeknownst to me, my peeps and I all had a similar moment: had the person from the USSR been in the system so long that their country of origin was now just Russia? Silicon Valley has a particular immigrant population: mostly, people hailed from India, Pakistan, China, or Mexico. There were a couple of Brits and Canadians.
The current naturalization oath is:
I took it, reflecting on the exchange in my interview about whether I as a disabled person could bear arms -- it was decided that I could usefully fly a drone plane. I found myself fascinated that the discourse of documented immigration is one of war while that of undocumented immigration is one of work. War disables so many of America's citizens, transferring them in an instant from membership in a group of those represented in her defining imagery to membership in a group with the highest unemployment statistics. Once a soldier; now, mostly, invisible.
But before I could get any further following the bitter irony. I had become a Yank. We were formally invited to wave our flags. I opened my voter registration materials, took out my little plastic flag, glanced at my disabled comrade to my right, and held it up in front of me.
Dressed appropriately, the Wizard, a couple of friends and I shot off to an older, but nicely renovated small town theater to be naturalized (well, I did; they came to watch). And it was the experience of a lifetime. But perhaps not in the way a potential immigrant would expect. I was happy for the whole thing to be so multi-cultural -- information about voting in 5 languages, people of different races and cultures so alive and so visible -- but I was shocked by the images of America that pervaded the ceremony.
I'm not a great believer in ritual; I learned that ceremony doesn't always make the difference you think it should shortly after we were married. But I do believe that what we say and do in ritual and ceremony are key to understanding what we think about ourselves -- as people and as a culture. So, I was curious about what I would think and feel about being in a room, in a highly emotional situation, with a lot of people all doing and saying the same thing. I don't do group. It scares the *!@#* out of me. For a while, I wasn't even sure I would even say the required oaths aloud -- I don't say them for the country I was born in, so I wasn't clear on what would make me say them for a country I was choosing. (I did, though. Just this once. I even placed my hand over my heart, but I did not stand -- more on that later.)
I don't know how much you know about the process. But it's like being in a machine: 500 people in my ceremony, and they were doing three ceremonies on my day. I was very unaware. I won't say naive, because I guess I could have found out more, had I asked; I just didn't think to find out. I didn't even know who would be performing the ceremony or who else would be there. What would I have to do? These were questions to which I should have had answers, because as it was, I was unprepared.
The people being sworn in were separated from our families; we sat in rows according to some impenetrable system (whether or not we had a certain number of points on our application? people in our party? who knows?). I and the only other wheelchair user were placed at the back of the hall behind a wall over which I could barely see. I was prepared for it to be a multi-racial, multi-ethnic, multi-lingual gathering; I was curious about what the disability take would be.
Disability and immigration have a long history of something between uneasiness and rampant discrimination. At the moment, the ACLU has filed suit against the deportation and indefinite detention of people who are not able to understand the proceedings against them. Canada recently denied the immigration of a family, because one of the children was disabled (link to a summary of Canadian policy and the idea of disability as an "excessive demand" on the system). This link is to a post on my site about the quirks, disability and otherwise, of the N-400, the form you file to apply for naturalization.
As we waited to become American, a screen slideshow of iconic images of the US floated before us; the photographs, mainly of North-East coastal American and San Francisco, were accompanied by military music. This made sense: between the pictures of the Golden Gate Bridge, the Statue of Liberty, New England lighthouses and Mount Rushmore (no, not coastal), were pictures of America's troops, her planes, her ships, and her other paraphernalia of war. I was curious about the people in the pictures of immigrants of the past -- shown, of course, in huddled, downtrodden mass poses of people yearning to be free. What had happened to them? Where had they gone?
Mostly, though, I was surprised by the pictures chosen as representative of the country. So many politicians seem to refer to the mid-West and South as places of the average American, but there were no pictures of, as my friend put it, "waving wheat." No, the America pictured was both coastal and warlike. For some, the coasts are home to America's elite. And this made the conjunction of imagery somewhat incongruous. Do Washington, New York, and New England elites fight the country's wars?
I don't know how much standardization there is between ceremonies. Was mine an accident of location or are they all like this? Who conducts them? (An official from USCIS, it turns out). I worry about standardization because mine was totally chaotic. It's an awful thing to say. But it was totally chaotic. The officiator had not practised what he was going to say. So, he just talked; he wasn't the best of public speakers. I think he was aiming for inspirational, but he didn't have anything original or new to say. He rambled (he probably does a gazillion of these things and the awesome nature of the moment wears thin). When he opened it up to his counterpart, they joined in reading a list of notable Americans.
I have to admit. Many of the names read aloud were unfamiliar to me, so the effect is clearly a product of my ignorance. Nonetheless, the names that I recognized were either famous weapons scientists or actors. You can imagine my horror at, and I quote verbatim, the following string of names: Liam Neeson, Madeleine Albright, Pamela Anderson... Yes, you read that aright. My jaw hit the floor, and I missed the other names. I looked around; no one else seemed perturbed and the moment rolled by: these are notable Americans. And, in truth, I guess they are. After all, no one has heard of me; my name won't be read before thousands of people, eagerly anticipating the moment when they will become citizens of a great nation. Snobbery or not, I want to differentiate between the work of the first female Secretary of State and the work of an actress perhaps most famous for her body and personal life.
I was drawn back into the ceremony at the moment we were supposed to take the oath. We were called upon to stand; the other wheelchair user and I looked at each other. He winked; I rolled my eyes. He chortled and was shushed by his family. There was a roll-call of countries of origin; people had come from all over the world, including the USSR and also Russia. Unbeknownst to me, my peeps and I all had a similar moment: had the person from the USSR been in the system so long that their country of origin was now just Russia? Silicon Valley has a particular immigrant population: mostly, people hailed from India, Pakistan, China, or Mexico. There were a couple of Brits and Canadians.
The current naturalization oath is:
I hereby declare, on oath, that I absolutely and entirely renounce and abjure all allegiance and fidelity to any foreign prince, potentate, state or sovereignty, of whom or which I have heretofore been a subject or citizen; that I will support and defend the Constitution and laws of the United States of America against all enemies, foreign and domestic; that I will bear true faith and allegiance to the same; that I will bear arms on behalf of the United States when required by the law; that I will perform noncombatant service in the armed forces of the United States when required by the law; that I will perform work of national importance under civilian direction when required by the law; and that I take this obligation freely without any mental reservation or purpose of evasion; so help me God.
I took it, reflecting on the exchange in my interview about whether I as a disabled person could bear arms -- it was decided that I could usefully fly a drone plane. I found myself fascinated that the discourse of documented immigration is one of war while that of undocumented immigration is one of work. War disables so many of America's citizens, transferring them in an instant from membership in a group of those represented in her defining imagery to membership in a group with the highest unemployment statistics. Once a soldier; now, mostly, invisible.
But before I could get any further following the bitter irony. I had become a Yank. We were formally invited to wave our flags. I opened my voter registration materials, took out my little plastic flag, glanced at my disabled comrade to my right, and held it up in front of me.
Tuesday, August 10, 2010
Just Who You Callin' White
I'm still processing this one -- so there's not much in the way of analysis here.
It has always been fun for me to experience the myriad ways disability "whitens" me as I go about life in the mainstream (i.e., white, non-disabled) world. Essentially, the way this works is that the cultural perception that disabled peeps are childlike, always in need of charity and/or help usually overcomes the threat posed by my race. I've always thought of it as a kind of "fuck you -- your racism deserves to be subverted by my disability." I've never had the experience where disability whitens me in/before an African-American eye.
I emerged from the whatever it is in Philadelphia -- metro? subway? SEPTA? -- and pushed past the bus stop. An older African-American woman reached out to me: "You white?" I was so shocked that I stopped and told her how rude that was. In so doing, I was, of course, rude myself. She got irate, because she thought she was giving me a compliment. [breathes.] This pissed me off. So, I stopped to tell her what I thought of that perspective. Bad idea, yes.
We got into it. I had put her on the defensive; that made the conversation less an exchange of ideas than a mutually exclusive, non-responsive run through of our own thoughts. My take on things was that lightness of skin colour shouldn't be the defining marker of blackness. "Things have changed," I said (so sure of my own rightness). "I hold my race as an essential part of myself. I am black," I said firmly; I hope that I did not allow my inner angry voice to show. Said inner voice was bitterly noting that even if I wanted to be accepted as white, there was no bloody way. "Shut up," I told my inner voice. "You want to give an positive argument for identification, here."
My interlocutor poked me: "Your mama white?" All thoughts of positive interaction slipped beyond my grasp. I knew that we weren't actually talking about race and yet. Yet, I answered her question literally. My English accent returning more strongly than usual, I talked about my white father and my Afro-Caribbean mother; I spoke bitterly about the loss of Spanish and Creole-speaking family members and English as the language of acceptance. I gave her the history full and square. "Now," I demanded, "do you think of me as white?"
The woman shrugged: "Just thought, because of the ...." and pointed to my wheelchair.
On the face of it, a wheelchair cannot delineate race. The disability rights movement may not do an acceptable job of recognizing how white its culture and assumptions are, but it isn't like people of colour don't become disabled. In fact, statistically speaking, there is a higher incidence of disability among African Americans when compared with, say Asian (Americans?). And I know from walking the streets in my grandmother's neighborhood in New Jersey that disability is so visible, that it seems like a norm. We're not talking about the fact of disability here; we're talking about the yawning class gap apparent in how I live it.
I see social class in my access to the kind of healthcare that allows me to have my current wheelchair. That's a conversation that's occurring all over the place; we don't need to go there. I wonder though whether the kind of chair itself was enough to whiten me. It's very functional, yet pretty and custom. It's not the kind if thing you can buy in a pharmacy or off the floor in your local medical supply store. That kind of access is often, but not always aligned with socio-economic class.
More importantly, though, I see the effects of class ideology in access to ideas. I've always argued that to be able to call your disability an identity and not just live it as your medical condition is a sign of some kinds (but not all) of privilege, but I've never felt it as keenly as in that conversation. And I didn't know what to do about it. I certainly wasn't in a position to keep lecturing a woman of a generation that knows first more about race and civil rights in the US than I ever will. And a bus shelter isn't the place to narrate the mostly white history of the usability rights movement as an attempt to bring someone into the fold.
So, I left. But I have worried about it ever since.
It has always been fun for me to experience the myriad ways disability "whitens" me as I go about life in the mainstream (i.e., white, non-disabled) world. Essentially, the way this works is that the cultural perception that disabled peeps are childlike, always in need of charity and/or help usually overcomes the threat posed by my race. I've always thought of it as a kind of "fuck you -- your racism deserves to be subverted by my disability." I've never had the experience where disability whitens me in/before an African-American eye.
I emerged from the whatever it is in Philadelphia -- metro? subway? SEPTA? -- and pushed past the bus stop. An older African-American woman reached out to me: "You white?" I was so shocked that I stopped and told her how rude that was. In so doing, I was, of course, rude myself. She got irate, because she thought she was giving me a compliment. [breathes.] This pissed me off. So, I stopped to tell her what I thought of that perspective. Bad idea, yes.
We got into it. I had put her on the defensive; that made the conversation less an exchange of ideas than a mutually exclusive, non-responsive run through of our own thoughts. My take on things was that lightness of skin colour shouldn't be the defining marker of blackness. "Things have changed," I said (so sure of my own rightness). "I hold my race as an essential part of myself. I am black," I said firmly; I hope that I did not allow my inner angry voice to show. Said inner voice was bitterly noting that even if I wanted to be accepted as white, there was no bloody way. "Shut up," I told my inner voice. "You want to give an positive argument for identification, here."
My interlocutor poked me: "Your mama white?" All thoughts of positive interaction slipped beyond my grasp. I knew that we weren't actually talking about race and yet. Yet, I answered her question literally. My English accent returning more strongly than usual, I talked about my white father and my Afro-Caribbean mother; I spoke bitterly about the loss of Spanish and Creole-speaking family members and English as the language of acceptance. I gave her the history full and square. "Now," I demanded, "do you think of me as white?"
The woman shrugged: "Just thought, because of the ...." and pointed to my wheelchair.
On the face of it, a wheelchair cannot delineate race. The disability rights movement may not do an acceptable job of recognizing how white its culture and assumptions are, but it isn't like people of colour don't become disabled. In fact, statistically speaking, there is a higher incidence of disability among African Americans when compared with, say Asian (Americans?). And I know from walking the streets in my grandmother's neighborhood in New Jersey that disability is so visible, that it seems like a norm. We're not talking about the fact of disability here; we're talking about the yawning class gap apparent in how I live it.
I see social class in my access to the kind of healthcare that allows me to have my current wheelchair. That's a conversation that's occurring all over the place; we don't need to go there. I wonder though whether the kind of chair itself was enough to whiten me. It's very functional, yet pretty and custom. It's not the kind if thing you can buy in a pharmacy or off the floor in your local medical supply store. That kind of access is often, but not always aligned with socio-economic class.
More importantly, though, I see the effects of class ideology in access to ideas. I've always argued that to be able to call your disability an identity and not just live it as your medical condition is a sign of some kinds (but not all) of privilege, but I've never felt it as keenly as in that conversation. And I didn't know what to do about it. I certainly wasn't in a position to keep lecturing a woman of a generation that knows first more about race and civil rights in the US than I ever will. And a bus shelter isn't the place to narrate the mostly white history of the usability rights movement as an attempt to bring someone into the fold.
So, I left. But I have worried about it ever since.
Sunday, August 8, 2010
Totally Cringe-worthy Dance
After many of our performances, the dancers of our company come back on stage for a Q and A or talkback or something. It's my least favourite part of the job. I like the protection of the stage and the lights. I will do anything on stage because the firm line of the proscenium protects me. Even when what we are doing is risky, physically and or emotionally, even when I am feel most stripped and vulnerable, I take refuge in the knowledge that I am safe behind the light, the curtains, and the edge of the stage. In that limited, bordered place, I will give you my all. When the lights and curtain are taken away and we reappear (usually soaked in sweat, dressed in half in street clothes and half in costume, water bottles, scarves and jackets tightly in hand), we are no longer the wild, fierce beautiful things on stage; we are human.
Revealing our humanity is, of course, part of the point. Too often, despite the sweat and the breath, dancers seem untouchable, ethereal, and surreal. As I sit before the audience, though, I usually just feel vulnerable and clunky. I'm not so worried that someone will say something negative about the performance -- but now I think of it, that would be awful -- I find that I am afraid of what people will say about disability and art and that I am unwilling to keep explaining my physicality for consumption by a medically fascinated/intrigued/uncertain audience. It's one thing to be in control of your self-presentation as a dancer; it's another to have to explain why you are the way you are; and still another to have to welcome commentary that, in other spaces, you would write off without a second thought.
Here's what I mean. A choreographer recently changed the ending to one of his pieces. The first version slowed carefully. A voice calls to the dancers on stage; we move; it calls again; we move, this time for a shorter duration; and again; we freeze, recognizing our concluding shapes as the end of a thirty minute journey. We're here; our time has come to an end. The lights come down slowly; we look at each other intensely and acknowledge the power of the experience we have shared. In the new version, the voice calls to us in the same way; we mark out the seconds to the end of our journey together. But on the final call, instead of finding a quiet stillness, the movement takes us out of ourselves. Time cannot stop; this cannot be the end. We move. And we move. And we just keep moving as the lights come down into black forcing us to stop. I love both endings. They resonate deeply within me; I find myself wanting to cry sometimes, so deeply do I feel the end of time.
After that moment, I want people to talk about the journey they've shared with us. And they do. It's just that all too often, we aren't on the same pathway at all. Two recent comments have got me thinking. In the first, an audience member is pleased and excited that we've "earned" our applause: that people aren't just clapping because some of us are disabled and we've managed to lift a finger. The speaker is exaggerating, of course, but we have encountered situations where reviewers have given positive reviews simply because being disabled and being on stage is so "inspirational." In these situations, people aren't engaging with the work; they are reaffirming (for their own safety) a set of useless societal stereotypes about disability, artistry, and virtuosity. I don't know how to react to such comments. I DESPISE any form of the word inspiration that isn't being used to describe an intake of breath (link is to my site and a post about it). If seeing almost two hours of fierce dance and intense art cannot break people out of this mode, nothing will.
At the same time, however, I think of this comment as having a nasty, nasty edge. We "earned" our applause, (damn right we did), but we earned it by executing a series of movements that are recognizably extraordinary. When we dive, roll, cartwheel, wheelie, lift, run, jump, balance, ...., we are doing things that almost anyone can recognize as needing skill. It's physically, technically hard. But what if, as a disabled dancer, lifting my finger and bowing my head were as technically complicated for me, in my body, as any of the daredevil things a colleague and I currently do. The work and the skill would be the same, but who in the audience would recognize that I had earned my applause as deservedly? If we continue to push for extreme movement as somewhat definitional, the dance world will remain exclusive. And that isn't right. Dance belongs to the moving body, not the institution.
A second audience member expresses delight at our work; it's a particularly sweet delight since this person was concerned about cringing. The comment stings me deeply. It comes from a well-meaning place -- that, I gather -- it bites nonetheless. I've seen "cringe-worthy dance." If you go to a lot of performances, you will sooner or later hit a couple of "bad" ones. But this audience member made an association between the cringe-worthiness of the performance and the presence of disabled performers. Such is the state of disability-awareness that it is still possible to say this, aloud, in front of other people without an apparent sense of shame. There's a kind of assumption that a fear of cringing is a shared feeling, and I suppose it probably is.
To my mind, cringe-worthy performances by disabled people come from denying disability, from attempting to overcome it (in a saccharine, inspirational way), or from playing it for sympathy or good will. When disabled performers render themselves abject before your very eyes because that's what our society expects, it is indeed cringe-worthy. But only because we should cringe at a society that so devalues the humanity of some of its people. We should cringe before a culture that insists on building an understanding of its physicality by casting out the physicality of others. It's not about cringing because there are disabled performers on stage doing what looks like, well, dance.
It's kind of like going to a freak-show. If we can be sure that the disabled performers control and manipulate the gaze of a non-disabled eye, that's one thing. But if the performers are unable to maintain a sense of, I dunno, irony, distance, control; if they seem only to play to societal expectations and to lose themselves, that is cringe-worthy. It is cringeworthy because you, the audience member, participate in the unthinking consumption of another human being as they reiterate for your entertainment a set of demeaning social stereotypes. Neither the performers themselves nor the performance are worthy of your cringe.
On the way home, the bitterness burning inside my stomach, I wonder at the history of "cringe" as a word. A quick check of the Online Etymology Dictionary confirms for me a thought that has been gnawing at my gut. Cringe and crinkle share an etymological history: they are both connected to the Old English word, crincan. "Cringing," as the commenter used it, contains a sense of shrinking away in fear. It's a very physical word; you can see a cringe in the mind's eye and experience it in your body. The twisted, bentness of cringe has a softer dimension, though, in the branch of words that is connected to our current crinkle. Crinkle has a sense of "yielding."
I hit the accelerator as I swing into the curve that takes me up the hill to where I currently live. I feel my body bend and twist with the steering wheel as the car, the steering wheel and my torso join in a driving dance. What if, unbeknownst to the commenter, "cringe" actually was the right word? What if our performance actually was cringe-worthy -- in the sense that our power evoked a kind of yielding and softness in the audience's bodies? What if, as they softened and let go of prejudice, the passion in our movement transported them to a different place? The car parks itself (thank god); I open the door and bend forward experimenting with a cringing, crinkly softness.
Revealing our humanity is, of course, part of the point. Too often, despite the sweat and the breath, dancers seem untouchable, ethereal, and surreal. As I sit before the audience, though, I usually just feel vulnerable and clunky. I'm not so worried that someone will say something negative about the performance -- but now I think of it, that would be awful -- I find that I am afraid of what people will say about disability and art and that I am unwilling to keep explaining my physicality for consumption by a medically fascinated/intrigued/uncertain audience. It's one thing to be in control of your self-presentation as a dancer; it's another to have to explain why you are the way you are; and still another to have to welcome commentary that, in other spaces, you would write off without a second thought.
Here's what I mean. A choreographer recently changed the ending to one of his pieces. The first version slowed carefully. A voice calls to the dancers on stage; we move; it calls again; we move, this time for a shorter duration; and again; we freeze, recognizing our concluding shapes as the end of a thirty minute journey. We're here; our time has come to an end. The lights come down slowly; we look at each other intensely and acknowledge the power of the experience we have shared. In the new version, the voice calls to us in the same way; we mark out the seconds to the end of our journey together. But on the final call, instead of finding a quiet stillness, the movement takes us out of ourselves. Time cannot stop; this cannot be the end. We move. And we move. And we just keep moving as the lights come down into black forcing us to stop. I love both endings. They resonate deeply within me; I find myself wanting to cry sometimes, so deeply do I feel the end of time.
After that moment, I want people to talk about the journey they've shared with us. And they do. It's just that all too often, we aren't on the same pathway at all. Two recent comments have got me thinking. In the first, an audience member is pleased and excited that we've "earned" our applause: that people aren't just clapping because some of us are disabled and we've managed to lift a finger. The speaker is exaggerating, of course, but we have encountered situations where reviewers have given positive reviews simply because being disabled and being on stage is so "inspirational." In these situations, people aren't engaging with the work; they are reaffirming (for their own safety) a set of useless societal stereotypes about disability, artistry, and virtuosity. I don't know how to react to such comments. I DESPISE any form of the word inspiration that isn't being used to describe an intake of breath (link is to my site and a post about it). If seeing almost two hours of fierce dance and intense art cannot break people out of this mode, nothing will.
At the same time, however, I think of this comment as having a nasty, nasty edge. We "earned" our applause, (damn right we did), but we earned it by executing a series of movements that are recognizably extraordinary. When we dive, roll, cartwheel, wheelie, lift, run, jump, balance, ...., we are doing things that almost anyone can recognize as needing skill. It's physically, technically hard. But what if, as a disabled dancer, lifting my finger and bowing my head were as technically complicated for me, in my body, as any of the daredevil things a colleague and I currently do. The work and the skill would be the same, but who in the audience would recognize that I had earned my applause as deservedly? If we continue to push for extreme movement as somewhat definitional, the dance world will remain exclusive. And that isn't right. Dance belongs to the moving body, not the institution.
A second audience member expresses delight at our work; it's a particularly sweet delight since this person was concerned about cringing. The comment stings me deeply. It comes from a well-meaning place -- that, I gather -- it bites nonetheless. I've seen "cringe-worthy dance." If you go to a lot of performances, you will sooner or later hit a couple of "bad" ones. But this audience member made an association between the cringe-worthiness of the performance and the presence of disabled performers. Such is the state of disability-awareness that it is still possible to say this, aloud, in front of other people without an apparent sense of shame. There's a kind of assumption that a fear of cringing is a shared feeling, and I suppose it probably is.
To my mind, cringe-worthy performances by disabled people come from denying disability, from attempting to overcome it (in a saccharine, inspirational way), or from playing it for sympathy or good will. When disabled performers render themselves abject before your very eyes because that's what our society expects, it is indeed cringe-worthy. But only because we should cringe at a society that so devalues the humanity of some of its people. We should cringe before a culture that insists on building an understanding of its physicality by casting out the physicality of others. It's not about cringing because there are disabled performers on stage doing what looks like, well, dance.
It's kind of like going to a freak-show. If we can be sure that the disabled performers control and manipulate the gaze of a non-disabled eye, that's one thing. But if the performers are unable to maintain a sense of, I dunno, irony, distance, control; if they seem only to play to societal expectations and to lose themselves, that is cringe-worthy. It is cringeworthy because you, the audience member, participate in the unthinking consumption of another human being as they reiterate for your entertainment a set of demeaning social stereotypes. Neither the performers themselves nor the performance are worthy of your cringe.
On the way home, the bitterness burning inside my stomach, I wonder at the history of "cringe" as a word. A quick check of the Online Etymology Dictionary confirms for me a thought that has been gnawing at my gut. Cringe and crinkle share an etymological history: they are both connected to the Old English word, crincan. "Cringing," as the commenter used it, contains a sense of shrinking away in fear. It's a very physical word; you can see a cringe in the mind's eye and experience it in your body. The twisted, bentness of cringe has a softer dimension, though, in the branch of words that is connected to our current crinkle. Crinkle has a sense of "yielding."
I hit the accelerator as I swing into the curve that takes me up the hill to where I currently live. I feel my body bend and twist with the steering wheel as the car, the steering wheel and my torso join in a driving dance. What if, unbeknownst to the commenter, "cringe" actually was the right word? What if our performance actually was cringe-worthy -- in the sense that our power evoked a kind of yielding and softness in the audience's bodies? What if, as they softened and let go of prejudice, the passion in our movement transported them to a different place? The car parks itself (thank god); I open the door and bend forward experimenting with a cringing, crinkly softness.
Wednesday, August 4, 2010
On The Cover
For the next couple of weeks, I will also be guest-blogging at Feministe. This post is cross-posted here, too. Feel free to go on over and join the conversation.
I will not be embedding the image here for copyright reasons, primarily, and because I am not happy with it -- even given the argument that it is part of a tradition.
In no way, do I think what happened to Aisha is at all acceptable, excusable, or forgivable. Nothing I am about to write is intended to convey that. This post is a reflection on how the disability that resulted from an unjust punishment is being used to further the discussion of war and women's rights.
In no way, do I wish to convey the idea that I do not think women's rights in Afghanistan are of critical importance; I think women's rights are a signal human rights issue. I am trying to understand the role of disability in the discussion of women's rights.
You can read an abridged version of article and see the photograph I'm talking about here. Beware the comments.
Do you remember the picture in National Geographic of the so-called Afghan girl?
The photograph, taken by Steve McCurry, was of Sharbat Gula; her image adorned the cover of a 1985 issue of National Geographic (The link is to National Geographic's discussion and review of the story almost 20 years later). I was barely aware of the wider world, then, but as I look back through web discussions (weird, that the web doesn't go back to 1985, eh?), it seems that the Western world was fascinated with her face, her possible life, her unknown story, her "exotic green eyes,".... You get the picture. She became a symbol; McCurry won Best 100 National Geographic Pictures.
There's so much to be said about this story, about the confluence of race, gender, and feminism, about the practices of marketing and Western media -- it's an uncomfortable and disturbing mess. Her value as a symbol was and, indeed, is still so compelling that National Geographic went back in 2002 to find her, to see what had happened to her. Among the outcomes of that visit was a second image of her face -- discussion this time is about how hard her life has been. The two images are at the root of a kind of Shepard-Fairey-like tradition of making and remakings of the image -- some with honourable intent and some not -- all over the internet. (The link is to google image search for "Afghan girl.")
And now, there's a third. This latest photograph is the focus of my post today. It's on the cover of TIME magazine. Once more, the face of a beautiful, young Afghan woman stands in for a discussion of war. This time, however, the woman is visibly disabled. As the cover makes clear, the torture that rendered Aisha disabled, is one of the consequences/risks of an American withdrawal from Afghanistan and the consequent return of the Taliban. I have nothing to say about this thesis; my focus is the value of disability in this picture.
Some More Provisos
The Photographic Tradition
I don't know who reads TIME; I don't. I don't know how many of TIME's readers are old enough to remember the National Geographic photograph in the original or how many became acquainted with Sharbat Gula's story when National Geographic visited a second time. I do think, however, that there is a mainstream audience out there that is able to recognize that the TIME photo refers back to the National Geographic picture. My bet is that when they make the comparison between the two covers, Aisha will be cast negatively. And that disturbs me. How many of TIME's readers will look at the image and recognize Aisha as beautiful, exactly as she is? How many of those readers will use her disability as the reason that no one could ever find her beautiful. "As is" is important to me here, because I find sentiments such as "despite her disability,..." as deeply patronizing. Disability can be integrated into one's understanding of a whole and hale human being.
I'm not saying that I think Aisha's particular body is a natural part of human variation; it's not. (Just in case you thought I was making a pollyanna disability rights and culture argument -- I am making a disability rights and culture argument, just not a simple one.) Some children are born with bodies that might be comparable; others acquire them through surgery or medical conditions. I believe in the beauty of these bodies; Lucy Grealy's achingly beautiful Autobiography Of A Face in which she discusses beauty, disability, and faces was one of the texts that helps me arrive at such a statement.
Aisha withstood several acts of unbelievable violence; she has a before and after that I think might complicate how we understand her photograph. This video discusses the photographer's approach.
Transcription
Aisha for me was one woman that really stood out. She's staying in a shelter in Kabul. There was a court case against her within the tribe. She said that as punishment men took her and cut off her ears and her nose. For me, it was more about capturing something about her. And that was the really difficult part. You know her headscarf fell slightly back and her hair was exposed. And she had the most beautiful hair. And I said to her, you know, "You really are such a beautiful woman, and I could never understand or know how you feel it, you know, by having your nose and ears cut off, but what I CAN [emphasis hers] do is show you as beautiful in this photograph." I could have made a photograph with her looking or, or being portrayed more as the victim. And I thought, "No. This woman is beautiful."
In the voiceover, Ms. Bieber finds Aisha beautiful, but that recognition comes not from a consideration of her face or her body as it is now; it's prompted by an admiration for her hair. (How many times has a white woman found beauty in the hair of a woman of colour?) I suppose I should be glad that Ms. Bieber can see Aisha's beauty, no matter what its source. But I remain frustrated with the cover image. S.E. Smith (who wrote here earlier this summer) reminds me that Ms. Bieber probably didn't make the decision herself: covers are editorial decisions. But let's say, for a moment, that a decision was made and that Ms. Bieber consented. The decision (which is not discussed -- does Ms. Bieber deny her own agency? She's not disowning the photograph) is to go for the pose that most resembles the world-famous image of Sharbat Gula.
The discourse surrounding the photograph of Sharbat Gula is comprised in large part of discussion of her beauty and, in particular, her eyes. In the photograph, Aisha is posed to recall Sharbat Gula's image -- both women are placed in similar light, with similar head and body positions with regard to the camera, both women wear a headscarf that reveals their hair, both women stare intensely into the camera. The signal difference between the two women is that one is visibly disabled.
This image would not have to be cover of the magazine. In fact, I would argue that it is the cover primarily because of the power of Sharbat Gula's image and the, by contrast, negative shock value of Aisha's disability for readers in the mainstream US (but possibly also Western) world. Ms. Bieber, would not have had to use Aisha's picture at all -- there are other women in the article. Ms. Bieber would not have had to pose her in this manner -- there's another picture of her in the article, seated cross-legged and smiling, full face to the front, at the camera. She's not even in that position in the video in which Ms. Bieber talks about how she took Aisha's picture. No. Ms. Bieber's decision (which, incidentally, she doesn't discuss) is to go for the pose that most resembles the world-famous image of Sharbat Gula. It's deliberate. It's the money-shot.
Regardless of how disability plays out in Aisha's world, the vast majority of readers of TIME live in a culture that understands disability as tragedy. As shocking. As among the worst things that can happen to you (bar death). Mainstream American culture thinks it knows disability and knows how to read it. Ms. Bieber has a history of photographing disabled bodies (there's an image of a wheelchair user in this video of her "Real Beauty" pictures). But the work she does in the Real Beauty series does not come through in this photograph -- perhaps because of the context and placement of the image. Here she (and or the editor) uses Aisha's disability to trade upon the readership's sympathies and their horror: this and other unknown kinds of disability are a direct result of the US departure from Afghanistan. This is not about Aisha; it's about the message of the article.
That women's rights will be at risk, should the US leave Afghanistan is really not a debatable issue. In fact, looking at Aisha's story, it seems pretty clear that women's rights are at risk even while the US is in Afghanistan. So why does the story need Aisha's disability?
The relationship between feminism and disability rights is, as the blogosphere repeatedly shows, vexed. Mainstream feminisms simply don't know what to do with disability. And here, it seems to me that the argument is simple: disability is a screen upon which the narrative claims of women's rights are projected. (As a disability rights activist, I would have to sigh and say, "again.") There is no understanding that women's rights and disability rights do not have to be mutual antagonists. Instead, the Bieber image, as contextualized in TIME, attempts to make women's rights off the back (so-to-speak) of disability rights. Aisha's body is the quickest route to publicizing a serious message. It's the easiest, most visceral, most unthinking, sloppiest way to get a point across.
To those who would protest that Ms. Bieber was just trying, as she said, to make her look beautiful, I would say that the problem of Western mores, beauty, and disability for people who live non-Western worlds is equally vexed. Anyone remember the beauty contest organized by a white Norwegian, presumably able-bodied man for female amputees in Angola? The mainstream blogosphere discussion was about how important it was for these women to regain their self-esteem. How problematic is it that the non-disabled white folk seek to restore and communicate the beauty (in their own terms) of disabled women of colour? (Links are to my site and to feministe's own slightly horrifying discussion.) Oh, and in case you were wondering how invisible the disability aspect of Aisha's story might be, check out this NYT piece, classily entitled "Portrait of Pain."
We will never be able to approach these and other complex questions about the relationship of disability, feminism, and beauty unless we have a wider understanding of disability itself. I am going to moderate comments. I ask that you consider this conversation as being part of the process of exploring and understanding some of the ways disability, race, and feminism might travel together.
Tuesday, August 3, 2010
Update
Oh dear. Sorry about that. Seem to have taken an unofficial blogging break. I was absolutely exhausted and going through some stuffs (some of which you will hear about later). Smile. For the moment, though, I'd like to say, "Hi!" and "I'm still here!" In fact, I am back and better than ever.
Look for more posts coming up.
Look for more posts coming up.
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