Health care rationing is a complicated and difficult subject. I don't know where the borderlines between rationing and managed care lie. I'm not about to jump into this, either. But I do want to talk about the implications of rationed care.
I watched a relative pass through the final stages of her life, earlier this year. Dying itself is awful. Dehydration and starvation are difficult experiences to watch; I can't imagine how they felt to live. I felt awful for all of that time; I am still processing. As part of that journey, I became a very interested observer of the healthcare conventions for an actively dying person. (OK. I was more than an observer.)
The reason I mentioned dehydration et al. was not to re-open the debate about physician assisted suicide (though I kind of think we *should* talk about physician assisted dying -- that being a separate thing in my book), but to talk about dying as a process. You see, more often than not, you have to die of something. Only rarely, can a person close her eyes and say, "I'm going to die now," and then bring about her death by will. As often as not, even when you are in the terminal stages of something like cancer, you will die of something -- an infection, a heart attack, a stroke, a clot. You may just slip into unconsciousness and stop breathing, too. My interest is not the actual mechanism of dying so much as the way in which health care interacts with the dying person.
How much to spend? How much suffering to prevent proactively rather than relieve once a problem has occurred? If you are expected to die any minute now, how much care should you receive? Who decides? And on what basis? If you buy shortterm items rather than longer term (and better items) designed for the same use is the person's experience affected? Does that matter?
Friday, July 31, 2009
Thursday, July 30, 2009
Merce Cunningham and Wheelchairs
As the dance world mourns the death of Merce Cunningham, I am becoming more and more intrigued by the great choreographer's connection to disability. For a while now, google alerts has been linking wheelchair and dancer and returning stories of the Merce Cunningham Dance Company performances on tour, after which Merce appears in a wheelchair.
The stories, as you might guess, all run the same way. My favourite is this one: "I seem to recall that he was so crippled by arthritis that someone had to help him cut his food, but perhaps this is an exaggeration influenced by the memory of his terrible imprisonment in a wheelchair" (from the New Yorker, no less). Most of them are like this San Francisco Chronicle article: " Though he had to use a wheelchair in later years, he remained an active artist." Anyway. You get the picture.
Cunningham technique was never specifically designed for disabled dancers. But aspects of it (if you can talk about using only "parts" of a technique -- people do borrow and mix and match, though) are really productive for thinking about how disabled dancers can build a technique that matches their bodies without relying on the idea that each dancer has to faithfully replicate a precise set of shapes and lines in almost precisely the same way.
It's not just the idea of chance (dice-rolling, coin-flipping) nor even the separation of dance from story-telling or the creation of a looser relationship between movement and music -- all radical in their time, but common place now. It begins with the work with the spine, the facings and reverses, the balances and parts of the movement vocabulary -- some of which are absolutely fascinating to try and recreate using a wheelchair.
Critics and reviewers of Cunningham's work often mention the "pure movement" of his dance; they mean both his lines and the independence of the music and movement. I never met Cunningham in person; he was just wheeled onto stage to take his applause, but the recent stories and my own work leave me with several questions.
I wonder though if this "pure movement" phrase had any meaning for Cunningham himself. Was his analysis of movement so deep that he would have accepted the dance of disabled dancers, with all its "imperfections?" Was he able to feel movement in/through his body and chair? Would he have been offended by the way a disabled dancer like me might approach his technique and movement vocabulary? Would he have been OK with thinking of himself as a disabled dancer or did dance cease for him once his body was no longer as capable?
Post concludes with an excerpt from Cunningham's Channels/Inserts. New York Times review is here (subscription only it's from 1987). Enjoy.
The stories, as you might guess, all run the same way. My favourite is this one: "I seem to recall that he was so crippled by arthritis that someone had to help him cut his food, but perhaps this is an exaggeration influenced by the memory of his terrible imprisonment in a wheelchair" (from the New Yorker, no less). Most of them are like this San Francisco Chronicle article: " Though he had to use a wheelchair in later years, he remained an active artist." Anyway. You get the picture.
Cunningham technique was never specifically designed for disabled dancers. But aspects of it (if you can talk about using only "parts" of a technique -- people do borrow and mix and match, though) are really productive for thinking about how disabled dancers can build a technique that matches their bodies without relying on the idea that each dancer has to faithfully replicate a precise set of shapes and lines in almost precisely the same way.
It's not just the idea of chance (dice-rolling, coin-flipping) nor even the separation of dance from story-telling or the creation of a looser relationship between movement and music -- all radical in their time, but common place now. It begins with the work with the spine, the facings and reverses, the balances and parts of the movement vocabulary -- some of which are absolutely fascinating to try and recreate using a wheelchair.
Critics and reviewers of Cunningham's work often mention the "pure movement" of his dance; they mean both his lines and the independence of the music and movement. I never met Cunningham in person; he was just wheeled onto stage to take his applause, but the recent stories and my own work leave me with several questions.
I wonder though if this "pure movement" phrase had any meaning for Cunningham himself. Was his analysis of movement so deep that he would have accepted the dance of disabled dancers, with all its "imperfections?" Was he able to feel movement in/through his body and chair? Would he have been offended by the way a disabled dancer like me might approach his technique and movement vocabulary? Would he have been OK with thinking of himself as a disabled dancer or did dance cease for him once his body was no longer as capable?
Post concludes with an excerpt from Cunningham's Channels/Inserts. New York Times review is here (subscription only it's from 1987). Enjoy.
Wednesday, July 29, 2009
A Siesta Update: Working Wheels
Because I live a hip life (right), I am seated in a cafe (nightmare trying to find a table -- sharing with a nice gentleman who seems to be typing faster than all get out), posing like everyone else. It's amazing. Almost everyone here is typing; I know. It's the internet age, but not so long ago, people read books in cafes and mugged each other to get at the free newspapers. Now, the papers hang untouched on the wall and the fight is to get to the outlet. I long for the day when they make a solar tablet subnotebook (or they could just attach a keyboard to the iphone). Indulge me in a moment of nostalgia?
It's been a good day so far -- I was late to water walking class, but I made up for it by having made some progress. I worked out in the pool (PT exercises and relaxation), came home, cleaned up the cat vomit, officially declared my hand controls to the DMV, went to a meeting, and now I have a couple of hours to spare before I have dinner with a friend. My life sux, I know.
As I tool down the streets, I've been thinking about how my lower body and the wheels work together. I am finding a new value in sensing and working with the axle of the wheel.
Things I like about my wheel and my axle. Having finally located a pair of 25"s -- hooray! -- I am happy with the way my wheels work on my chair. I know that there is now 1/2" less dump than before, and it is really suprising how much that affects my balance and the way my chair moves. For the most part, I think I am coping. OK. I am more than coping. It's learning a new flexibility in the chair, a new tip point, and a new responsiveness. And all that is making me aware of where my hands, pelvis, and axles are.
The chair has a kind of rigidity to it that I am beginning to enjoy; I thought at first it would flare up the hip bursitis -- my time sitting on a plywood board was just agony. So hard -- even through the cushion. But this new arrangement has both rigidity and flexibility in it. Rigidity enables a fast and easy transfer of energy -- the slightest movement of my hips into the chair back or the sideguards influences the direction of travel or the speed. The chair feels tight and responsive (for a single-use dance chair, I could take off the soft roll casters and experiment with how the hard wheels cut into the marley, but I am kind of using my chair all over right now). I like that.
Flexibility is turning out to be a useful design aspect, but not a terribly helpful every day life thing. For starters, I creak everywhere I go. So not a good thing. I suppose I could find out which screws are loose, but somehow time has escaped me.
I am beginning to think that the axles are underestimated. Usually, I think of my axles only in terms of the camber of the wheels. It's nice to be able to change camber for different uses. I like 0 degrees for dance, though. I lose the ability to turn in a certain way -- turning forwards is not as fast. But I gain a whole lot more responsiveness and rapid movement. The chair is less stable (good because my arms aren't very long and I'm now using 25"s).
Mostly, though, I think the axle is a useful source for thinking about initiation and pinning the wheel. By pinning the wheel, I am talking about the effects of shifting your body weight over the axle and the effect it has on motion. You can also drop your hand down to the floor -- shoot your energy down -- effectively "pinning" the wheel.
The axle is my centre point -- in that space underneath the chair. Dance instructors frequently talk about energy rising up and down the spine, the plumb line, etc. My line comes down the innards of my body and right down to the axle. This is a direct result of Laurel's challenge to think differently about the body. I now imagine myself (or my studio self at least) as having a spine that exit points at my actual legs and at my axles. It's an odd image, but it is a starting point.
It's been a good day so far -- I was late to water walking class, but I made up for it by having made some progress. I worked out in the pool (PT exercises and relaxation), came home, cleaned up the cat vomit, officially declared my hand controls to the DMV, went to a meeting, and now I have a couple of hours to spare before I have dinner with a friend. My life sux, I know.
As I tool down the streets, I've been thinking about how my lower body and the wheels work together. I am finding a new value in sensing and working with the axle of the wheel.
Things I like about my wheel and my axle. Having finally located a pair of 25"s -- hooray! -- I am happy with the way my wheels work on my chair. I know that there is now 1/2" less dump than before, and it is really suprising how much that affects my balance and the way my chair moves. For the most part, I think I am coping. OK. I am more than coping. It's learning a new flexibility in the chair, a new tip point, and a new responsiveness. And all that is making me aware of where my hands, pelvis, and axles are.
The chair has a kind of rigidity to it that I am beginning to enjoy; I thought at first it would flare up the hip bursitis -- my time sitting on a plywood board was just agony. So hard -- even through the cushion. But this new arrangement has both rigidity and flexibility in it. Rigidity enables a fast and easy transfer of energy -- the slightest movement of my hips into the chair back or the sideguards influences the direction of travel or the speed. The chair feels tight and responsive (for a single-use dance chair, I could take off the soft roll casters and experiment with how the hard wheels cut into the marley, but I am kind of using my chair all over right now). I like that.
Flexibility is turning out to be a useful design aspect, but not a terribly helpful every day life thing. For starters, I creak everywhere I go. So not a good thing. I suppose I could find out which screws are loose, but somehow time has escaped me.
I am beginning to think that the axles are underestimated. Usually, I think of my axles only in terms of the camber of the wheels. It's nice to be able to change camber for different uses. I like 0 degrees for dance, though. I lose the ability to turn in a certain way -- turning forwards is not as fast. But I gain a whole lot more responsiveness and rapid movement. The chair is less stable (good because my arms aren't very long and I'm now using 25"s).
Mostly, though, I think the axle is a useful source for thinking about initiation and pinning the wheel. By pinning the wheel, I am talking about the effects of shifting your body weight over the axle and the effect it has on motion. You can also drop your hand down to the floor -- shoot your energy down -- effectively "pinning" the wheel.
The axle is my centre point -- in that space underneath the chair. Dance instructors frequently talk about energy rising up and down the spine, the plumb line, etc. My line comes down the innards of my body and right down to the axle. This is a direct result of Laurel's challenge to think differently about the body. I now imagine myself (or my studio self at least) as having a spine that exit points at my actual legs and at my axles. It's an odd image, but it is a starting point.
Tuesday, July 28, 2009
Dance Your Ass Off?
This offends me. On so many levels, this offends me. I've been disgusted by shows like "The Biggest Loser" ever since they came out, but my gorge rises today when I think about how DYAO (for so it is abbreviated), dance therapy, and Peter Singer's most disgusting piece of writing in the NYT over the weekend might be connected. (insert rant on the the NYT and its disability reporting).
You are probably thinking that these things don't have much to do with each other. And they don't -- or at least not in a traditional causative sense. You don't start with DYAO and end with Singer (it gives me some glee to put Singer and DYAO in such proximity to each other), but the same culture that enables and draws people to DYAO is born from the same impulses that are behind some of Singer's most obnoxious work.
DYAO is a weight loss reality show that springs off from the cultural Zeitgeist that makes dance shows like So You Think You Can Dance, Dancing With the Stars, and Strictly Come Dancing so popular; they take dance out of the rarefied atmosphere of the performance arts world and serve it up in such a way that a wide range of people can both consume and participate. With the exception of those dancers who are -- for the most part, you guessed it, fat and/or disabled -- the tv series are a fun, exhilarating way to see a diversity of dancers perform a wide variety of forms.
For those of us whose bodies do not approach the norms of a dancerly body, there are other less salubrious venues. There are exceptions, of course. Tiffany Geigel entered and made it through 2 rounds of So You Think You Can Dance. So did Auti Angel. The BBC is showing Dancing on Wheels -- Strictly Come Dancing meets Wheelchair Dance Sport. That's a positive example. But, for the most part, those of us with non-traditional dancer bodies don't make mainstream tv shows.
As much fun as it is to dance, I see shows like Loser and DYAO as excuses to exploit people's bodies. If you want to watch fat people dancing, find out about Big Moves (Mass Movement and the Phat Fly Girls). Find out about Danza Voluminosa (yeah, I know their publicity is problematic, but watch them dance). Are there any other fat groups in your area? Fat Chance Belly Dance? Burlesque? Belly dance? Dance is an art form, not a diet fad. And it is available to all bodies.
Here's a clip of Danza Voluminosa -- stick with it. The traditionally bodied dancer goes away after a few clips; by the time you get to the can-can fouettes you are watching technique, pure power and the body at its best.
Why this focus? Because if we are able to value the body in its diversity and not seek to alter, reduce, change, circumscribe, and normalize, we won't end up with the kind of thinking so ably demonstrated by Professor Singer. Neither the dance shows nor Peter Singer exist independently. They come from a context of disrespect and fear of physical difference. They work within a context of fat fear, obesity policy, and dysfunctional health care systems. DYAO undermines dance as an art form and disrespects the human dancing body. We don't need to stare and gawk. We need to drink in the beauty of movement.
You are probably thinking that these things don't have much to do with each other. And they don't -- or at least not in a traditional causative sense. You don't start with DYAO and end with Singer (it gives me some glee to put Singer and DYAO in such proximity to each other), but the same culture that enables and draws people to DYAO is born from the same impulses that are behind some of Singer's most obnoxious work.
DYAO is a weight loss reality show that springs off from the cultural Zeitgeist that makes dance shows like So You Think You Can Dance, Dancing With the Stars, and Strictly Come Dancing so popular; they take dance out of the rarefied atmosphere of the performance arts world and serve it up in such a way that a wide range of people can both consume and participate. With the exception of those dancers who are -- for the most part, you guessed it, fat and/or disabled -- the tv series are a fun, exhilarating way to see a diversity of dancers perform a wide variety of forms.
For those of us whose bodies do not approach the norms of a dancerly body, there are other less salubrious venues. There are exceptions, of course. Tiffany Geigel entered and made it through 2 rounds of So You Think You Can Dance. So did Auti Angel. The BBC is showing Dancing on Wheels -- Strictly Come Dancing meets Wheelchair Dance Sport. That's a positive example. But, for the most part, those of us with non-traditional dancer bodies don't make mainstream tv shows.
As much fun as it is to dance, I see shows like Loser and DYAO as excuses to exploit people's bodies. If you want to watch fat people dancing, find out about Big Moves (Mass Movement and the Phat Fly Girls). Find out about Danza Voluminosa (yeah, I know their publicity is problematic, but watch them dance). Are there any other fat groups in your area? Fat Chance Belly Dance? Burlesque? Belly dance? Dance is an art form, not a diet fad. And it is available to all bodies.
Here's a clip of Danza Voluminosa -- stick with it. The traditionally bodied dancer goes away after a few clips; by the time you get to the can-can fouettes you are watching technique, pure power and the body at its best.
Why this focus? Because if we are able to value the body in its diversity and not seek to alter, reduce, change, circumscribe, and normalize, we won't end up with the kind of thinking so ably demonstrated by Professor Singer. Neither the dance shows nor Peter Singer exist independently. They come from a context of disrespect and fear of physical difference. They work within a context of fat fear, obesity policy, and dysfunctional health care systems. DYAO undermines dance as an art form and disrespects the human dancing body. We don't need to stare and gawk. We need to drink in the beauty of movement.
Sunday, July 26, 2009
All Together Now
It's been a wonderful house weekend. (And some of it will continue through tomorrow). That house? It's real.
We spent the weekend looking for furniture. A couch that suits both of us would be very nice. We trekked all over the place, and, please, please, please, think we may have struck gold: a very basic, grey, soft couch. Then, we were off to the races with some outdoor furniture.
Mr. A helped us stumble upon some fascinating creations in rope and yarn. We were totally psyched. But when we approached the showroom, we saw that the 9 or so steps presented an impossible barrier. "No matter," the sales staff assured us, "there's a lift." We ran around the back, but the lift didn't work. "No matter," the sales staff assured us, "we'll call a technician. Go get some lunch." We went to get lunch, but when we came back, we could still see the office furniture blocking the would-be entrance at the top of the lift (duh!). My face fell. Was the lift not working? "No matter," the sales staff assured us, "we've got lots of men; we can carry you up or the furniture out."
Can you believe this? We sat outside in the parking lot and waited. The furniture came out, piece by piece. They set it up. Then, they set up a rug in between the pieces. We sat down. A couple of glasses of water and there we were. Camped out. In our personal outdoor living room. That's what I call customer service and a great approach to accessibility (or perhaps it's just desperation in a down economy). The lift should have been working, true. But they also could have sent us away. I feel really motivated to buy from them (their aim, no doubt).
Here we are all camped out in our own outdoor showroom.
Today, we spent hours at the house, discussing what should go where, walking the pathways, bathing in the sun, and enjoying the space that will be our future home. I don't use that word lightly. But more on that tomorrow after the landscaping meeting.
We spent the weekend looking for furniture. A couch that suits both of us would be very nice. We trekked all over the place, and, please, please, please, think we may have struck gold: a very basic, grey, soft couch. Then, we were off to the races with some outdoor furniture.
Mr. A helped us stumble upon some fascinating creations in rope and yarn. We were totally psyched. But when we approached the showroom, we saw that the 9 or so steps presented an impossible barrier. "No matter," the sales staff assured us, "there's a lift." We ran around the back, but the lift didn't work. "No matter," the sales staff assured us, "we'll call a technician. Go get some lunch." We went to get lunch, but when we came back, we could still see the office furniture blocking the would-be entrance at the top of the lift (duh!). My face fell. Was the lift not working? "No matter," the sales staff assured us, "we've got lots of men; we can carry you up or the furniture out."
Can you believe this? We sat outside in the parking lot and waited. The furniture came out, piece by piece. They set it up. Then, they set up a rug in between the pieces. We sat down. A couple of glasses of water and there we were. Camped out. In our personal outdoor living room. That's what I call customer service and a great approach to accessibility (or perhaps it's just desperation in a down economy). The lift should have been working, true. But they also could have sent us away. I feel really motivated to buy from them (their aim, no doubt).
Here we are all camped out in our own outdoor showroom.Today, we spent hours at the house, discussing what should go where, walking the pathways, bathing in the sun, and enjoying the space that will be our future home. I don't use that word lightly. But more on that tomorrow after the landscaping meeting.
Thursday, July 23, 2009
Universal Symbols Universal Problems
As a whole, I find the disability community quite sensitive to the deployment of a wheelchair user as a universal disability icon. Disability isn't simply about wheelchair use. This story from CNN in Sacramento (thanks, Wizard) pulls me in a variety of directions.
I've since wondered about the difference in costs. Where do they come from? If I order 25" wheels online, I will pay 2/3 of the price my provider quoted me for the same pair of wheels. Where's that money going? I can't believe it's going to support good customer service (they've had my chair for ages now -- and haven't called to tell me they need a prescription for repair... as if my doc knows that my front casters are trashed. Please oh, doctor doctor, can you heal my casters?). Overhead? Rental? Salaries? Who knows. Certainly, I cannot immediately come up with a way to justify their costs. (Or their attitude.)
The key here is "barely works for her" four years later; Ms. Brown now needs a new chair. Not everyone who rents a chair will need one for the longer term. Some people will. But insurance companies and Medicare, in their urge to save money, want to go with the rental thing. It reduces risk, perhaps, but not necessarily expenditure.
Debbie Brown used to process medical and dental forms for a living before a debilitating illness forced her into early disability retirement and left her in a simple, no-frills wheelchair -- a rented wheelchair that has cost taxpayers about $1,200.So true. My very first wheelchair was an Invacare 9000 SL. In 2001, it cost my insurance company $1,200. I was terrified; they denied at first. But I begged and appealed. And there it was. Mine. Months later, I looked online and discovered Spinlife. (Note: this is not an endorsement of Spinlife over Sportaid; I just found them first). It was just over $500; now, it can be bought for $275. There was no way to account for the terrible price my insurance paid. It was the same damned chair, with no customizations, no special seating, no sporty wheels. It was a simple, basic pair of wheels.
Brown says the public should be outraged about her wheelchair.
Why? She says she could buy a comparable wheelchair on the Internet for $440 if she had the money. It sounded hard to believe that her rented, $1,200 taxpayer-funded wheelchair could be bought for $440, so CNN decided to check -- and instead found an even better deal.
I've since wondered about the difference in costs. Where do they come from? If I order 25" wheels online, I will pay 2/3 of the price my provider quoted me for the same pair of wheels. Where's that money going? I can't believe it's going to support good customer service (they've had my chair for ages now -- and haven't called to tell me they need a prescription for repair... as if my doc knows that my front casters are trashed. Please oh, doctor doctor, can you heal my casters?). Overhead? Rental? Salaries? Who knows. Certainly, I cannot immediately come up with a way to justify their costs. (Or their attitude.)
I assume that the article has a point when they try to extrapolate outwards. Why a rented chair? Presumably, it won't be long before the cost of buying is less than the cost of the rent? After all, this "debilitating illness" forced Ms. Brown into early disability retirement. Doesn't sound like a temporary kind of thing. Indeed:
Congress sets the rates Medicare pays and Congress determined that wheelchairs should be billed on a monthly rate for 13 months -- the renter has to pay 20 percent of the costs. After 13 months, a user can opt to own it -- if the user knows about the rule.Brown, who worked in claims processing for years, said no one ever told her the wheelchair that barely works for her now is hers if she wants it. Instead, now that her rental term has ended, she gets billed by Apria every six months for service. Medicare pays $63 and she pays $16.
The key here is "barely works for her" four years later; Ms. Brown now needs a new chair. Not everyone who rents a chair will need one for the longer term. Some people will. But insurance companies and Medicare, in their urge to save money, want to go with the rental thing. It reduces risk, perhaps, but not necessarily expenditure.
If Medicare had fitted Ms. Brown with a Tilite ZRa (approx 1,800 on Spinlife, guessing at, say, just over 2K insurance), they would have lost money at first, but saved money over the long term. Because a customizable really NICE, titanium ultralight chair like the ZRa would, in all probability, still work for Ms. Brown four years later. (Weirdly, this rigid chair is cheaper than the (usually thought of as less sophisticated) folding versions, but there you are). Short term vs long term. Costs versus user needs. The story of powerchairs is even worse -- don't even get me started.
So far, so good. But here's what annoys me: the depiction of Ms. Brown. Ms. Brown is, it turns out, "a slightly built woman, who lives modestly with her husband in Sacramento..." They don't state her race, but she is, of course, white. No one could make such a compelling argument if Ms. Brown were (a la surgeon general, black and fat: link is to Washington Post article about Regina Benjamin, the nominee for the position). You couldn't make such a compelling argument if Ms. Brown were a riotous spender who had walked away from a McMansion she had bought in the era of excess. Oh no. For this story to work, we need Ms. Brown to be a sympathetic, appealing, modest, every-woman. You need a (white, female, thin) victim to maximize your sales of disability stories.
And why is this a human interest story and not a bitter indictment of the DME industry? Because numbers don't sell -- the competitive bidding aspect of the CNN story is less interesting than the story of Ms. Brown. We are, after all, thoroughly culturally innumerate. And because stories of oxygen tanks, crutches, canes, prosthetics and other DME are less universally appealing and less readily recognizable than a story about the icon of disability: a wheelchair user.
('S good to be back blogging).
Wednesday, July 15, 2009
Monday, July 13, 2009
Spectacular But Not Moved?
After our recent performance before a non-dance audience, I looked up: a standing ovation and tears. Genuine enthusiasm and excitement about our work. Real appreciation. But what had they seen? As a performer, I believe it is important to ask about reception and to think about it, even if you know that you cannot control interpretation.
That said, I wonder what people see when they observe spectacular stuff -- almost invariably, a large section of non-technical audiences is wowed by the stuff that is visually striking but not always hard to do. People clap when they see the first wheelie (they stop after they realize that it's a standard part of the vocabulary). There is a trick to understanding the sweet balance point; yeah, we are vulnerable to gravity, but it's not per se hard. Hard are some of the side balances and counterbalances with our partners. Hard are timing and rhythm. I am beginning to suspect that the audience responds to their sense of how much we are physically vulnerable.
I'd note here that their sense of physically vulnerable often comes from an unnecessary worry about collision or about us running over a fragile dancer toe. No one worries about the wheelchair users being tipped over backwards by our non-disabled partners (what center of gravity?). No one worries about us being clocked by a leg flying by at 90 mph. They do worry about whether or not we might fall. But there you are. Physical vulnerability is wow. And the more we do it, they more they respond.
And yet, I've been to technically flawless performances and had my first response be, "wow, they must be so bruised." Physical vulnerability is more about risk. About fireworks. It isn't always rewarding to watch. So, risk, in my book, should always be partnered with emotional vulnerability.
This latter is hard to describe. It's not always that we are dancing these huge great emotional dramas. Far from it. Much of what we do is pretty abstract; no narrative, no inherent emotional situation. And yet, people cry. What the hell? OK. Time to stop being disingenuous; there is one piece currently in rep that makes me want to cry. By the time we've finished, I just want to weep from exhaustion (wrote about it here and here). Actually, going back over those entries, I am finding that the operative word is "vulnerable." I feel exposed -- even though I know that I am safe behind the proscenium and safe in my dance persona. You may be hearing my voice, my words; you may be seeing my body move. But that in toto is a construction. It's not me.
So, what makes me vulnerable? How do you achieve vulnerability?
That said, I wonder what people see when they observe spectacular stuff -- almost invariably, a large section of non-technical audiences is wowed by the stuff that is visually striking but not always hard to do. People clap when they see the first wheelie (they stop after they realize that it's a standard part of the vocabulary). There is a trick to understanding the sweet balance point; yeah, we are vulnerable to gravity, but it's not per se hard. Hard are some of the side balances and counterbalances with our partners. Hard are timing and rhythm. I am beginning to suspect that the audience responds to their sense of how much we are physically vulnerable.
I'd note here that their sense of physically vulnerable often comes from an unnecessary worry about collision or about us running over a fragile dancer toe. No one worries about the wheelchair users being tipped over backwards by our non-disabled partners (what center of gravity?). No one worries about us being clocked by a leg flying by at 90 mph. They do worry about whether or not we might fall. But there you are. Physical vulnerability is wow. And the more we do it, they more they respond.
And yet, I've been to technically flawless performances and had my first response be, "wow, they must be so bruised." Physical vulnerability is more about risk. About fireworks. It isn't always rewarding to watch. So, risk, in my book, should always be partnered with emotional vulnerability.
This latter is hard to describe. It's not always that we are dancing these huge great emotional dramas. Far from it. Much of what we do is pretty abstract; no narrative, no inherent emotional situation. And yet, people cry. What the hell? OK. Time to stop being disingenuous; there is one piece currently in rep that makes me want to cry. By the time we've finished, I just want to weep from exhaustion (wrote about it here and here). Actually, going back over those entries, I am finding that the operative word is "vulnerable." I feel exposed -- even though I know that I am safe behind the proscenium and safe in my dance persona. You may be hearing my voice, my words; you may be seeing my body move. But that in toto is a construction. It's not me.
So, what makes me vulnerable? How do you achieve vulnerability?
Tuesday, July 7, 2009
Seriously, Though
When you lie in bed at night (alone or not ... I find not worse: the regular unpeturbed sleeping of a partner pisses me off) and your body does some thing, what do you do with that twitch of fear that rises? What do you do with what if? The "Oh no?" The sometimes, "please, no..." When you beg silently is that worse than if you actually say it aloud?
It's funny that as strong as I actually am and as well as I feel, the underlying insecurity about what happens next and my responses to pain are still there and, surprise, still the same. Sometimes, the hypnosis tapes, the relaxation breathing, the mind exercises, the knowledge that it has always gone away ... Just not enough. Sometimes. You know. I forget.
I forget and my strongest recollection is my fear. It's worse than a fading nightmare. Perhaps even the fear is worse than the current body event. There really is a time of day when the circadian rhythms, or whatever your physical analysis system would name it, fail. When you are most vulnerable to your ugliest monsters. When you know that the dawn is coming and that you would rather not face the light and that you can't stay where you are.
That's the time. That's the time when the absurd bargains you make with the universe seem real and yet futile. Until you realize that you made them last time and that they somehow worked.
It's funny that as strong as I actually am and as well as I feel, the underlying insecurity about what happens next and my responses to pain are still there and, surprise, still the same. Sometimes, the hypnosis tapes, the relaxation breathing, the mind exercises, the knowledge that it has always gone away ... Just not enough. Sometimes. You know. I forget.
I forget and my strongest recollection is my fear. It's worse than a fading nightmare. Perhaps even the fear is worse than the current body event. There really is a time of day when the circadian rhythms, or whatever your physical analysis system would name it, fail. When you are most vulnerable to your ugliest monsters. When you know that the dawn is coming and that you would rather not face the light and that you can't stay where you are.
That's the time. That's the time when the absurd bargains you make with the universe seem real and yet futile. Until you realize that you made them last time and that they somehow worked.
Saturday, July 4, 2009
Best Bathroom in NYC
This, peeps, is the best accessible bathroom in the city: a fire hydrant. City planners, please take note.
Post contains an image of a w/c user raising a wheel over a hydrant like a dog.
(a friend drew the hydrant).
FriendFeed?
What Is This "FriendFeed"?
This is your friendly neighborhood Wizard, in his long-awaited and long-delayed WCD blog debut!
Many have just begun to dip a toe into Twitter, while some are knee-deep in the wonder and communication of it. Others just don't see the point, and a charming few haven't heard of Twitter yet. Please divide yourselves into two groups, the Twitterati and the Nevertweets. Now let me write to each of you in turn.
Dear Twitterati:
Bravo! There is an unexpected wonder and magic about the types of contact and connection that Twitter can facilitate. It's immediate and pithy, and it helps us understand each other -- and be open with each other -- in deep ways.
But Twitter is like a very noisy cocktail party. Sometimes you aren't interested in a topic but it keeps returning. It can be hard to have a real discussion or conversation when you hear only parts of what's being said. 140 characters is not enough for big ideas.
You may want your friends to know about other parts of your online life: when you publish to your blog, upload photos to Flickr, share an article in Google Reader, favorite a video on YouTube, change your status message on Facebook or Gmail, vote for an article on Digg, etc. It's inconvenient to go to Twitter to tell people what you're doing -- it's much easier to just do things and your friends can find out.
FriendFeed makes it easier to have conversations, to hide things you're not interested in, and to include all your public online life in one persona. FriendFeed is a companion to Twitter -- not a replacement, not a "Twitter app" like Twitterific or TweetDeck, but a complementary service that can send tweets when you do things around the web (like writing a Yelp review or uploading photos) and can help you organize discussions that include your Twitter followers.
Dear Nevertweets:
Telling the world that you're eating a sandwich isn't your thing, I know. But every now and then would you like to start a discussion about something? Would you like to find out what news articles or blogs people felt were thought provoking, or to see the photos from your friends' latest travels? Or would you just like your friends to easily tune in to "your things" across the web? If so, give FriendFeed a try.
How To Try FriendFeed in 5 Minutes:
1. In the right column of this blog, find the "Subscribe" button for FriendFeed. Then click on "Join FriendFeed."
2. If you're on Facebook, Gmail, or Twitter, click on the appropriate icon(s) to link those accounts with your FriendFeed. Your password will be safe, because you'll only give your Twitter password to Twitter, your Gmail password to Google, and your Facebook password to Facebook.
3. You can add other services to your FriendFeed during signup or at any time by clicking on the "Settings" link on the upper right of the FriendFeed homepage. People often link their blogs, Flickr, Yelp, Amazon wishlists, Last.fm playlists, YouTube favorites, Digg, etc.
4. If you use Twitter, click on the "Settings" link and then click on "Twitter publishing preferences." This is where you tell FriendFeed which of your posts you want it to tweet out.
And then you're done! FriendFeed pages update automatically, while you watch, as people make comments and add new content. You don't even need to reload the page; it just changes. By visiting http://friendfeed.com/ you can comment on your friends' content, start discussions yourself, and hide discussions you don't care for. If you "Like" a post or comment on a post, your friends will see the post along with your Like or comment.
WCD has placed two FriendFeed widgets in the right column of this blog. The top widget shows the last 3 posts WCD made to her FriendFeed, much like the Twitter badge that used to be there. She doesn't display the Twitter badge anymore since FriendFeed includes all her tweets. The bottom widget is a FriendFeed search showing all the mentions of WCD on FriendFeed. This search constantly updates. You can Like or comment on any of these posts right here in the right column of the blog.
Even if you end up not using FriendFeed yourself, you've still accomplished something: any of your friends who use FriendFeed will be able to subscribe to you and see your content from around the web.
(thank you, Wizard... enjoy !)
This is your friendly neighborhood Wizard, in his long-awaited and long-delayed WCD blog debut!
Many have just begun to dip a toe into Twitter, while some are knee-deep in the wonder and communication of it. Others just don't see the point, and a charming few haven't heard of Twitter yet. Please divide yourselves into two groups, the Twitterati and the Nevertweets. Now let me write to each of you in turn.
Dear Twitterati:
Bravo! There is an unexpected wonder and magic about the types of contact and connection that Twitter can facilitate. It's immediate and pithy, and it helps us understand each other -- and be open with each other -- in deep ways.
But Twitter is like a very noisy cocktail party. Sometimes you aren't interested in a topic but it keeps returning. It can be hard to have a real discussion or conversation when you hear only parts of what's being said. 140 characters is not enough for big ideas.
You may want your friends to know about other parts of your online life: when you publish to your blog, upload photos to Flickr, share an article in Google Reader, favorite a video on YouTube, change your status message on Facebook or Gmail, vote for an article on Digg, etc. It's inconvenient to go to Twitter to tell people what you're doing -- it's much easier to just do things and your friends can find out.
FriendFeed makes it easier to have conversations, to hide things you're not interested in, and to include all your public online life in one persona. FriendFeed is a companion to Twitter -- not a replacement, not a "Twitter app" like Twitterific or TweetDeck, but a complementary service that can send tweets when you do things around the web (like writing a Yelp review or uploading photos) and can help you organize discussions that include your Twitter followers.
Dear Nevertweets:
Telling the world that you're eating a sandwich isn't your thing, I know. But every now and then would you like to start a discussion about something? Would you like to find out what news articles or blogs people felt were thought provoking, or to see the photos from your friends' latest travels? Or would you just like your friends to easily tune in to "your things" across the web? If so, give FriendFeed a try.
How To Try FriendFeed in 5 Minutes:
1. In the right column of this blog, find the "Subscribe" button for FriendFeed. Then click on "Join FriendFeed."
2. If you're on Facebook, Gmail, or Twitter, click on the appropriate icon(s) to link those accounts with your FriendFeed. Your password will be safe, because you'll only give your Twitter password to Twitter, your Gmail password to Google, and your Facebook password to Facebook.
3. You can add other services to your FriendFeed during signup or at any time by clicking on the "Settings" link on the upper right of the FriendFeed homepage. People often link their blogs, Flickr, Yelp, Amazon wishlists, Last.fm playlists, YouTube favorites, Digg, etc.
4. If you use Twitter, click on the "Settings" link and then click on "Twitter publishing preferences." This is where you tell FriendFeed which of your posts you want it to tweet out.
And then you're done! FriendFeed pages update automatically, while you watch, as people make comments and add new content. You don't even need to reload the page; it just changes. By visiting http://friendfeed.com/ you can comment on your friends' content, start discussions yourself, and hide discussions you don't care for. If you "Like" a post or comment on a post, your friends will see the post along with your Like or comment.
WCD has placed two FriendFeed widgets in the right column of this blog. The top widget shows the last 3 posts WCD made to her FriendFeed, much like the Twitter badge that used to be there. She doesn't display the Twitter badge anymore since FriendFeed includes all her tweets. The bottom widget is a FriendFeed search showing all the mentions of WCD on FriendFeed. This search constantly updates. You can Like or comment on any of these posts right here in the right column of the blog.
Even if you end up not using FriendFeed yourself, you've still accomplished something: any of your friends who use FriendFeed will be able to subscribe to you and see your content from around the web.
(thank you, Wizard... enjoy !)
Thursday, July 2, 2009
Falling
Perhaps I should not write this post. OK. In writing this, I KNOW I am jinxing myself. But here goes anyway.
I pride myself on some combination of my balance and my skills; I haven't fallen in a very long time. Today, however, I almost took myself over (too much in the bag on the back, duh!). And all the old fear came rushing back. I've written a lot about falling here. In part because it took a while to develop skills and experience and in part because dancing is not a safe thing.
There's this from January 2007: "Falling from your wheelchair has many parts. The moment before you realize it's all over. The feeling of falling. The whump as you hit the ground, and the getting back in." This from 2006: "And I'm running. I mean tearing down Broadway (Iglide can manage about 6 mph -- haha ) when I miss the cut and just splat forwards (the chair manages to tip backwards) right before a bunch of helpful people (who I've just passed) and straight in front of another wheelie." This is one of the most terrifying dance falls:
In rehearsal, we often say "fall and recover." We mean that the falling dancer recovers possession of his or her body (though of course the falls are controlled). We don't mean that the dancer must take time to recover physically from the injury of the fall. Last summer, as I learned to cartwheel with a dancer simultaneously, I bit the dust every few seconds. The tv crew was fascinated and what made us -- me -- get up and start again. But now that's all I can think of. If I fall, I must recover. But recovering has begun to change its meaning, too. When I think recover, I don't feel recoil or simple getting up. I feel retreat. A covering and protecting of my body and its frailties.
So, this post is for the record. Some scary falling video:
You can always recover if you are willing to start again; you may not regain your pre-fall self.
And some photo demonstrations of how to get up: tuck and roll. Tuck and roll. And then drag yourself back to neutral.
I pride myself on some combination of my balance and my skills; I haven't fallen in a very long time. Today, however, I almost took myself over (too much in the bag on the back, duh!). And all the old fear came rushing back. I've written a lot about falling here. In part because it took a while to develop skills and experience and in part because dancing is not a safe thing.
There's this from January 2007: "Falling from your wheelchair has many parts. The moment before you realize it's all over. The feeling of falling. The whump as you hit the ground, and the getting back in." This from 2006: "And I'm running. I mean tearing down Broadway (Iglide can manage about 6 mph -- haha ) when I miss the cut and just splat forwards (the chair manages to tip backwards) right before a bunch of helpful people (who I've just passed) and straight in front of another wheelie." This is one of the most terrifying dance falls:
The whole thing started well, but I hadn't thought ahead fully. I just figured that I would do a side bend and try to get a little lower. Bad plan. I raised my arms, breathed, and went over. As I stretched, I could feel the wheel on the opposing side rising up beneath me -- yup, you guessed it. I had forgotten the counterbalance. So, there I am. For a second, I try to deny what's happening. But the wheel rises inexorably, and my arms are so far over my head that I can't get them back quick enough. No problem, I figure. I will just come back up again. But by this time, I am too far gone to get back. The chair pauses for a second; there's a moment where I just hang with one wheel off the ground. I can see how cool I look in the mirror. And then it's over.As time has passed, though, I've changed my take on all this falling. Falling is how my shoulder, neck, and hip dance injuries occurred -- chronicled around this blog. Falling is now too scary to think about; it must be avoided at all costs. The word itself just tips gracefully over from one end of the mouth to the other. As you say it, you open your mouth gracefully and delicately complete the "l" sound. The action, however, is different from the enunciation. Of this, I am all too sure.
In rehearsal, we often say "fall and recover." We mean that the falling dancer recovers possession of his or her body (though of course the falls are controlled). We don't mean that the dancer must take time to recover physically from the injury of the fall. Last summer, as I learned to cartwheel with a dancer simultaneously, I bit the dust every few seconds. The tv crew was fascinated and what made us -- me -- get up and start again. But now that's all I can think of. If I fall, I must recover. But recovering has begun to change its meaning, too. When I think recover, I don't feel recoil or simple getting up. I feel retreat. A covering and protecting of my body and its frailties.
So, this post is for the record. Some scary falling video:
You can always recover if you are willing to start again; you may not regain your pre-fall self.
And some photo demonstrations of how to get up: tuck and roll. Tuck and roll. And then drag yourself back to neutral.
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