Her last post concludes: "Art! Science! Risk! Truth! Whee! Right? Right."
Yeah, Sara! Right.
Tuesday, March 31, 2009
Sara
Sara's art is beautiful; her strength dynamic. Her power and passion vibrate through the 'sphere. Laugh aloud funny and pinningly perspicacious, Sara's writing, photography, and person reshaped a little piece of my world. I never got to meet her in person, but I will miss her.
Her last post concludes: "Art! Science! Risk! Truth! Whee! Right? Right."
Her last post concludes: "Art! Science! Risk! Truth! Whee! Right? Right."
Monday, March 30, 2009
How We Talk About Each Other
I'm feeling really awkward about some of the ways we talk about each other to each other and, equally, about some of the ways the non-disabled world talks about us. My discomfort derives from two sources: the necessity of identifying disability and the ways of describing it.
Years and years ago, I remember seeing a relatively public discussion about how major media handled/should handle the question of race. Where whiteness is the default -- call it, unmarked -- was it really necessary to constantly call attention to the markedness of race -- and, in particular, the markedness of blackness when reporting crime. Is a defendant's race necessary to the public's right to know if race is not material to the crime itself? To be equal, was it going to be necessary to call attention to all races? What if race were material to the story, what kind of stories would ever be written in which whiteness were material? Slowly, I saw the same kind of filter being applied to age and, sadly, in too few places, size. I saw no discussion of disability.
One of the things I hate in the disability community is the from one to another, "So, what's your disability?" For me, it comes all too early in the conversation and while I realize that it is meant as a way to bond, I feel uncomfortable -- as if we are no different from the outside world, we categorize and bond by our medical histories. In some cases, it is as if my membership is somehow being challenged, as if ....
And yet, I am among the worst offenders when it comes to describing one crip friend to another ... "quad, para, post-polio ...." I sort of assume that it telegraphs from one disabled person to another an insider's information that will help make sense of the next thing I am about to say. And even as I do so, I feel that I am doing something that is not quite "outing" because there's nothing closeted about the way these crips are with their disability (it's either visible or they are so out and high profile that there's no secret about disability if I were to mention name), but not quite OK, either. Granted, it's within the community, but ... do I have to do the thing I hate so much?
When talking about a disabled person to a non-disabled person, the stakes are different. Here, I find us butting up against the way the nondisabled world talks about disability. It is always in the loss, the deficit, the brokenness, and impairment. X lost her arms, Y has one leg, G was paralyzed, ... You know? Missing from the conversation are the words that would describe the excess, the riot, the carnival of disabled bodies -- and the joy we have in them. I mean, what if a wheelchair were not a compensatory, assistive device in the imagination of the public? What if it didn't have to bring with it the assumption of a narrative of tragedy? How would it be if we could talk about the wheelchair as, yes, a device associated with disability but as a device of excess? A surplus?
In the past, I've turned my nose up at the "I have MS/MD/cancer or whatever, but it doesn't have me!" formulation; I'm none too happy with the people first language, either... I want something that jolts people and makes them think. I want something that disturbs; I want something that is cultural, as well as political. This description of GIMP from New York Times columnist Corey Kilgannon makes a start:
So, a fb self description. WCD is a woman of huge calico halo-hair. She lives from the chair? She is of her wheels? Gracefully wrenching spasmodically, she dances through the day. WCD explodes with spasm. OK. Time to stop.
Years and years ago, I remember seeing a relatively public discussion about how major media handled/should handle the question of race. Where whiteness is the default -- call it, unmarked -- was it really necessary to constantly call attention to the markedness of race -- and, in particular, the markedness of blackness when reporting crime. Is a defendant's race necessary to the public's right to know if race is not material to the crime itself? To be equal, was it going to be necessary to call attention to all races? What if race were material to the story, what kind of stories would ever be written in which whiteness were material? Slowly, I saw the same kind of filter being applied to age and, sadly, in too few places, size. I saw no discussion of disability.
One of the things I hate in the disability community is the from one to another, "So, what's your disability?" For me, it comes all too early in the conversation and while I realize that it is meant as a way to bond, I feel uncomfortable -- as if we are no different from the outside world, we categorize and bond by our medical histories. In some cases, it is as if my membership is somehow being challenged, as if ....
And yet, I am among the worst offenders when it comes to describing one crip friend to another ... "quad, para, post-polio ...." I sort of assume that it telegraphs from one disabled person to another an insider's information that will help make sense of the next thing I am about to say. And even as I do so, I feel that I am doing something that is not quite "outing" because there's nothing closeted about the way these crips are with their disability (it's either visible or they are so out and high profile that there's no secret about disability if I were to mention name), but not quite OK, either. Granted, it's within the community, but ... do I have to do the thing I hate so much?
When talking about a disabled person to a non-disabled person, the stakes are different. Here, I find us butting up against the way the nondisabled world talks about disability. It is always in the loss, the deficit, the brokenness, and impairment. X lost her arms, Y has one leg, G was paralyzed, ... You know? Missing from the conversation are the words that would describe the excess, the riot, the carnival of disabled bodies -- and the joy we have in them. I mean, what if a wheelchair were not a compensatory, assistive device in the imagination of the public? What if it didn't have to bring with it the assumption of a narrative of tragedy? How would it be if we could talk about the wheelchair as, yes, a device associated with disability but as a device of excess? A surplus?
In the past, I've turned my nose up at the "I have MS/MD/cancer or whatever, but it doesn't have me!" formulation; I'm none too happy with the people first language, either... I want something that jolts people and makes them think. I want something that disturbs; I want something that is cultural, as well as political. This description of GIMP from New York Times columnist Corey Kilgannon makes a start:
So the jaunty rhythm of Mr. Carter-Long’s offbeat stride is featured. So is the vertical linearity of Catherine Long — who was born without a left arm — when she stretches to the sky with her right arm, Statue of Liberty-style. And so is the intriguing asymmetry of Lezlie Frye 29, who has one arm shorter than the other and windmills both arms while bending at the waist, up and down.Notice what it (mostly) doesn't say: Mr. Carter-Long's gait is noticeably affected by his disability; it doesn't go on to name his disability and give the reader a full list of all the "problems" that are associated with it. Kilgannon (perhaps at the behest of the dancers? -- cuz I ain't seen nuttin like this before) simply reports any difference as an artistic feature. Similarly, Ms. Long's description asks us to consider whether or not her right arm is a "disabled" arm or a "normal" arm. We know that she was born *without one* (see there it is), but the absence doesn't seem to be the feature of the text. There's no mention of where the so-called "norm" might be found. Ditto the description of Ms. Frye's body. One arm is shorter than the other, and one arm is longer than the other. The description doesn't pathologize the length of either arm; all we know is the way in which Ms. Frye's arms appear and a way in which she uses them. Overall, yes, the language is awkward... but don't you get a sense of joy from it? A little pleasure from the disruption and the transgression?
So, a fb self description. WCD is a woman of huge calico halo-hair. She lives from the chair? She is of her wheels? Gracefully wrenching spasmodically, she dances through the day. WCD explodes with spasm. OK. Time to stop.
Sunday, March 29, 2009
House Takes Many Shapes
Sorry about that. Unexpectedly difficult week from a number of quarters that kept me and the Wizard running around in circles. When cats do it, it looks cute -- humans not so much. In a wheelchair, it can be simply dizzying. Smile. Anyway, the HOUSE!
Oh, the house. Yes! It's coming together. This is the transition from the living room space down to the bridge space. As I write, we have siding! And dry wall (which means we also have wiring, plumbing, and insulation). It means we can do cool stuff with paint. We've chosen the colour for the siding -- I wanted to keep the original wood (which right now is a beautiful cherry colour). I asked if it were possible simply to leave it or to stain it in such a way that it would be weather resistant without having to do something to it every year and without it actually losing its natural colour. The answer was no. We're lazy and we didn't want to be spending for it every year, either ...
So, we've picked a silver/grey colour that is translucent enough to allow the reds in, blue/green enough to go with the streaks in the telegraph poles, and grey enough to go with the natural trees. It's at the stage where it looks like a house. There's a roof with roof-like stuff on it (not tiles). There's windows and doors (no front door, yet though). It looks like an average house. And for that I am very happy: I thought for a while that it looked like a dumpy spaceship.
The house flows in lines of peace and light (if that makes any sense!). When you open the door, you can see a portion of the view, but you don't really know what you are looking at until you move through the transition to the open living/dining/kitchen space. It's a journey in expanding vistas of trees, hills, valley, and bay. Then, suddenly, there you are. Earthquake architecture meant that we had to lose the entire glass cube effect (apparently stilts, glass, earthquakes, and landslides meant there had to be some compromises for stability), but we were then able to add a sense of direction/promontory in the viewscape. Swings, roundabouts, swings.
Despite all the view, the original structure was weirdly dark; we added 4ft long skylights every 3ft or so.
Now, the light glows and pours in from above -- without being harsh: they seem to filter the light in such a way that it is never direct -- and the floor to ceiling windows and doors are now only openings for the view. This makes the transition between inner and exterior space virtually unnoticeable: it's like living in the trees. Smile. This is on a grey, rainy day.
We've had a little difficulty choosing an interior paint -- how to get the colour to be seamless with the outside. The walls were too dark when they were natural wood; we went with white. But what colour white? Hours of whites. And greys. Blue-whites, yellow-whites, bright-whites, grey-whites? It turns out that we might actually paint the beams and ceiling different shades of grey -- sounds weird, but it works. Trust me.
The next big things are scary. We've been anxious about a wall. Should we create a space where the view wasn't present? How not present? And so, the wall will be delivered next week -- the floating staircase and rampbridge come next. How to describe? The house is shaped like a C -- squared off -- so the question is how to get from one end of the C to the other, i.e., from the bedroom to the living space. In the original house, on the lower level, you had to go outside. On the upper level, there was a flight of stairs. (Yes, the original construction has the two ends of the C at different heights -- sigh.)
It turns out that raising the floor was a kind of dynamite expensive operation, so we filled in a passage way on the lower level and will put in a floating ramp on the upper level. To the right of the ramp is a wall of floor-to ceiling windows; the ramp will not touch them, it will be like a bridge across to the bedroom. (Kinda like being in an Apple Store, I suppose?). To the left of the ramp will be the staircase; the steps will fall away under the ramp to the lower hallway. To the left of the staircase will be the wall, behind which we will put a library. How much wall should there be? Updates later.
Throughout the project, access has been tricky -- because access is so much more than a door width or the absence of a carpet. I've written before about my request for a sense of movement and flow in the house -- Mr. A has achieved that. And it is striking. Absolutely stunning. You can wheel in this house -- provided that the cork floor doesn't turn out to be a bust (can't tell how much resistance cork gives when you are rolling over samples). I will be able to wheel in this house because the space is designed to wheel. The ramp bridge turns the corner (not sharply) the float continues into the bedroom (about 1/2 ft away from the wall) and then the ramp banks before delivering me to the bed.
This photograph is from December before the windows went in and the drywall went up; you can see the struts being made. It turned out to be hard to gauge the banking angle. I didn't want to scree down the ramp and into/out of the window. I wanted neither to have to yank the turn nor to have to deal with a steep slope that would make it difficult to go back up -- the bank would have to be enough to carry me around, but not so much that it would be work to push up. Mr. A and the chief contractor achieved this, too (it's really fun -- come on over!)
We've thought about the ways the oven/dishwasher/fridge doors open (or not). We've designed the counter to have a sit under bit; we've got sink access. We've thought about access to shelves at the back -- some of which are going to be out of reach (despite that thought); we'll put stuff that I might need within my reach (I'm never going to do more cooking than making a pot of coffee). We've done these and a bunch of other things -- the shower has turned into a nightmare. My bad: I didn't want it to be a bench on the side of the shower enclosure wall; I suddenly decided I wanted to be able to scoot around the shower as well as lie on the bench (something about being able to move). And I know that the first time someone else visits, I will learn that we will have forgotten something or not planned for something. scary. huh -- p'raps I should invite a bunch of chair users to come and give me more perspective?
Now, there's an idea!
Oh, the house. Yes! It's coming together. This is the transition from the living room space down to the bridge space. As I write, we have siding! And dry wall (which means we also have wiring, plumbing, and insulation). It means we can do cool stuff with paint. We've chosen the colour for the siding -- I wanted to keep the original wood (which right now is a beautiful cherry colour). I asked if it were possible simply to leave it or to stain it in such a way that it would be weather resistant without having to do something to it every year and without it actually losing its natural colour. The answer was no. We're lazy and we didn't want to be spending for it every year, either ...So, we've picked a silver/grey colour that is translucent enough to allow the reds in, blue/green enough to go with the streaks in the telegraph poles, and grey enough to go with the natural trees. It's at the stage where it looks like a house. There's a roof with roof-like stuff on it (not tiles). There's windows and doors (no front door, yet though). It looks like an average house. And for that I am very happy: I thought for a while that it looked like a dumpy spaceship.
The house flows in lines of peace and light (if that makes any sense!). When you open the door, you can see a portion of the view, but you don't really know what you are looking at until you move through the transition to the open living/dining/kitchen space. It's a journey in expanding vistas of trees, hills, valley, and bay. Then, suddenly, there you are. Earthquake architecture meant that we had to lose the entire glass cube effect (apparently stilts, glass, earthquakes, and landslides meant there had to be some compromises for stability), but we were then able to add a sense of direction/promontory in the viewscape. Swings, roundabouts, swings.
Despite all the view, the original structure was weirdly dark; we added 4ft long skylights every 3ft or so.
Now, the light glows and pours in from above -- without being harsh: they seem to filter the light in such a way that it is never direct -- and the floor to ceiling windows and doors are now only openings for the view. This makes the transition between inner and exterior space virtually unnoticeable: it's like living in the trees. Smile. This is on a grey, rainy day.We've had a little difficulty choosing an interior paint -- how to get the colour to be seamless with the outside. The walls were too dark when they were natural wood; we went with white. But what colour white? Hours of whites. And greys. Blue-whites, yellow-whites, bright-whites, grey-whites? It turns out that we might actually paint the beams and ceiling different shades of grey -- sounds weird, but it works. Trust me.
The next big things are scary. We've been anxious about a wall. Should we create a space where the view wasn't present? How not present? And so, the wall will be delivered next week -- the floating staircase and rampbridge come next. How to describe? The house is shaped like a C -- squared off -- so the question is how to get from one end of the C to the other, i.e., from the bedroom to the living space. In the original house, on the lower level, you had to go outside. On the upper level, there was a flight of stairs. (Yes, the original construction has the two ends of the C at different heights -- sigh.)
It turns out that raising the floor was a kind of dynamite expensive operation, so we filled in a passage way on the lower level and will put in a floating ramp on the upper level. To the right of the ramp is a wall of floor-to ceiling windows; the ramp will not touch them, it will be like a bridge across to the bedroom. (Kinda like being in an Apple Store, I suppose?). To the left of the ramp will be the staircase; the steps will fall away under the ramp to the lower hallway. To the left of the staircase will be the wall, behind which we will put a library. How much wall should there be? Updates later.
Throughout the project, access has been tricky -- because access is so much more than a door width or the absence of a carpet. I've written before about my request for a sense of movement and flow in the house -- Mr. A has achieved that. And it is striking. Absolutely stunning. You can wheel in this house -- provided that the cork floor doesn't turn out to be a bust (can't tell how much resistance cork gives when you are rolling over samples). I will be able to wheel in this house because the space is designed to wheel. The ramp bridge turns the corner (not sharply) the float continues into the bedroom (about 1/2 ft away from the wall) and then the ramp banks before delivering me to the bed.
This photograph is from December before the windows went in and the drywall went up; you can see the struts being made. It turned out to be hard to gauge the banking angle. I didn't want to scree down the ramp and into/out of the window. I wanted neither to have to yank the turn nor to have to deal with a steep slope that would make it difficult to go back up -- the bank would have to be enough to carry me around, but not so much that it would be work to push up. Mr. A and the chief contractor achieved this, too (it's really fun -- come on over!)
We've thought about the ways the oven/dishwasher/fridge doors open (or not). We've designed the counter to have a sit under bit; we've got sink access. We've thought about access to shelves at the back -- some of which are going to be out of reach (despite that thought); we'll put stuff that I might need within my reach (I'm never going to do more cooking than making a pot of coffee). We've done these and a bunch of other things -- the shower has turned into a nightmare. My bad: I didn't want it to be a bench on the side of the shower enclosure wall; I suddenly decided I wanted to be able to scoot around the shower as well as lie on the bench (something about being able to move). And I know that the first time someone else visits, I will learn that we will have forgotten something or not planned for something. scary. huh -- p'raps I should invite a bunch of chair users to come and give me more perspective?
Now, there's an idea!
Wednesday, March 18, 2009
All Things GIMP
GIMP is coming.....to New York City, March 19-21.
New York City tickets call # 212 -352-3101 or visit: www.theatermania.com
Preview video, photographs and more information available at @ http://www.thegimpproject.com
The Abrons Arts Center Presents
GIMP (New York Premiere)
Choreographed/Directed by HEIDI LATSKY
An ALLIGER ARTS and Heidi Latsky Dance Production
"reVisions everything you NEVER knew about dance and disability"
GIMP: gimp (gimp)
1.a ribbon like, braided fabric
2. fighting spirit; vigor
3. a lame person
4. slang; a halting, lame walk
5. to turn, vacillate, tremble ecstatically
"GIMP beautifully resets preconceptions about bodies and movement." -- THE NEW YORKER
MARCH 19-21 [Thu*-Sat at 8:00PM]
Location: The Abrons Arts Center, 466 Grand Street at Pitt, Manhattan
(F to East Broadway or Delancey; D or B to Grand Street; J or M to Essex Street)
General Admission: $20
($10 for students, seniors and people with disabilities; $15 for groups
Reservations: Call 212-352-3101 or visit www.henrystreet.org/arts
**Wheelchair Accessible -Advance Booking Strongly Recommended**
To see a video preview and for more info on GIMP go to: www.thegimpproject.com
During the month of March, a special exhibit in the Gallery at the Abrons Arts Center will feature photos of GIMP by Carlos Arias and the woven artwork WATERFALL by 30 weavers from "Loop of the Loom"- a weaving studio in NYC that promotes free expression and self-development through the SAORI creative weaving program
What Are People Saying About GIMP?
"I'm impressed with the way Latsky makes our eyes work...she makes this potentially unwieldy crew seem like a society of individuals with a zest for organized festivity." Deborah Jowitt, The Village Voice
"Latsky…diminutive vessel of energy, concentration, and passion- personifies that state every dancer aspires to-in which intent and execution are one." Tobi Tobias, The Village Voice
“GIMP beautifully resets preconceptions about bodies and movement.” The New Yorker
“Brilliant theater and dance. New, exciting and immensely pleasurable. Latsky is on to something! The work does not ignore or side-step impairment -The audience went wild -they realized that something new was in front of them and they were privileged to witness it." Simi Linton, Disability Culture Watch
"The dancing was formidable, the moments profoundly moving and the end heartbreakingly beautiful." Maura Nguyen Donohue, The Dance Insider
“Something extraordinary happened this weekend at St. Mark's Church. Heidi Latsky, the former Bill T. Jones dancer turned feisty downtown choreographer, premiered a dance so impassioned - and so good - that the packed audience sat spellbound.” Joy Goodwin, The New York Sun
“Latsky, a mover and shaker if there ever was one...her career as part of the socially conscience Bill T. Jones Co. is now the stuff of legend. She has turned her zestful creativity and huge unstoppable energy toward “GIMP”, which highlights uncommon virtuosities and the raw beauty of bodies” Time Out, Chicago
“An austere and immaculate meditation on the conventional and unconventional body, danced to perfection.” BUZZINE.com
“Daring risk-taking movement, visually exciting and deeply emotional…it is the moves of all kinds of bodies that count” Albuquerque Journal
“One of the truly standouts of the evening was Heidi Latsky’s "Gimp”, a true embodiment of the idea that dance was an art that transcended the physical limitations of disability and age.” OFFoffoff.com
"I highly recommend seeing GIMP ... if you are in the NY City area... it's a beautiful and innovative dance performance." Beth Haller, Media dis&dat
MORE
We're all very excited by the positive attention GIMP is receiving and thrilled to be performing on our home turf this weekend! Remember, even if you've seen excerpts or previews before you've not seen the full show which is now over an hour long! This weekend is your chance to experience GIMP as it is meant to be seen -- with aerialists, live musicians and, of course, all our dancers. Author Simi Linton (My Body Politic) will be moderating talkbacks all three nights and Thursday's performance is a benefit for the "Wounded Warrior Project,” a nonprofit organization dedicated to raising awareness and enlisting the public’s aid for the needs of severely injured service men and women. Discount tickets for students, seniors, people with disabilities and groups of ten or more are available, call 212-352-3101 to reserve.
New York City tickets call # 212 -352-3101 or visit: www.theatermania.com
Preview video, photographs and more information available at @ http://www.thegimpproject.com
The Abrons Arts Center Presents
GIMP (New York Premiere)
Choreographed/Directed by HEIDI LATSKY
An ALLIGER ARTS and Heidi Latsky Dance Production
"reVisions everything you NEVER knew about dance and disability"
GIMP: gimp (gimp)
1.a ribbon like, braided fabric
2. fighting spirit; vigor
3. a lame person
4. slang; a halting, lame walk
5. to turn, vacillate, tremble ecstatically
"GIMP beautifully resets preconceptions about bodies and movement." -- THE NEW YORKER
MARCH 19-21 [Thu*-Sat at 8:00PM]
Location: The Abrons Arts Center, 466 Grand Street at Pitt, Manhattan
(F to East Broadway or Delancey; D or B to Grand Street; J or M to Essex Street)
General Admission: $20
($10 for students, seniors and people with disabilities; $15 for groups
Reservations: Call 212-352-3101 or visit www.henrystreet.org/arts
**Wheelchair Accessible -Advance Booking Strongly Recommended**
To see a video preview and for more info on GIMP go to: www.thegimpproject.com
During the month of March, a special exhibit in the Gallery at the Abrons Arts Center will feature photos of GIMP by Carlos Arias and the woven artwork WATERFALL by 30 weavers from "Loop of the Loom"- a weaving studio in NYC that promotes free expression and self-development through the SAORI creative weaving program
What Are People Saying About GIMP?
"I'm impressed with the way Latsky makes our eyes work...she makes this potentially unwieldy crew seem like a society of individuals with a zest for organized festivity." Deborah Jowitt, The Village Voice
"Latsky…diminutive vessel of energy, concentration, and passion- personifies that state every dancer aspires to-in which intent and execution are one." Tobi Tobias, The Village Voice
“GIMP beautifully resets preconceptions about bodies and movement.” The New Yorker
“Brilliant theater and dance. New, exciting and immensely pleasurable. Latsky is on to something! The work does not ignore or side-step impairment -The audience went wild -they realized that something new was in front of them and they were privileged to witness it." Simi Linton, Disability Culture Watch
"The dancing was formidable, the moments profoundly moving and the end heartbreakingly beautiful." Maura Nguyen Donohue, The Dance Insider
“Something extraordinary happened this weekend at St. Mark's Church. Heidi Latsky, the former Bill T. Jones dancer turned feisty downtown choreographer, premiered a dance so impassioned - and so good - that the packed audience sat spellbound.” Joy Goodwin, The New York Sun
“Latsky, a mover and shaker if there ever was one...her career as part of the socially conscience Bill T. Jones Co. is now the stuff of legend. She has turned her zestful creativity and huge unstoppable energy toward “GIMP”, which highlights uncommon virtuosities and the raw beauty of bodies” Time Out, Chicago
“An austere and immaculate meditation on the conventional and unconventional body, danced to perfection.” BUZZINE.com
“Daring risk-taking movement, visually exciting and deeply emotional…it is the moves of all kinds of bodies that count” Albuquerque Journal
“One of the truly standouts of the evening was Heidi Latsky’s "Gimp”, a true embodiment of the idea that dance was an art that transcended the physical limitations of disability and age.” OFFoffoff.com
"I highly recommend seeing GIMP ... if you are in the NY City area... it's a beautiful and innovative dance performance." Beth Haller, Media dis&dat
MORE
We're all very excited by the positive attention GIMP is receiving and thrilled to be performing on our home turf this weekend! Remember, even if you've seen excerpts or previews before you've not seen the full show which is now over an hour long! This weekend is your chance to experience GIMP as it is meant to be seen -- with aerialists, live musicians and, of course, all our dancers. Author Simi Linton (My Body Politic) will be moderating talkbacks all three nights and Thursday's performance is a benefit for the "Wounded Warrior Project,” a nonprofit organization dedicated to raising awareness and enlisting the public’s aid for the needs of severely injured service men and women. Discount tickets for students, seniors, people with disabilities and groups of ten or more are available, call 212-352-3101 to reserve.
Also, those of you in the Big Apple this weekend be sure to check out Ping Chong's Inside/Out: voices from the disability community on one of the other nights. Details here:
http://www.nytimes.whsites.net/timescenter/events.php?month=03&year=2009&day=20
VIDEO HERE
http://video.nytimes.com/video/2009/03/17/nyregion/1194838595087/collision-of-dance-and-disability.html
VIDEO HERE
http://video.nytimes.com/video/2009/03/17/nyregion/1194838595087/collision-of-dance-and-disability.html
AIG
We are AIG clients. And not by choice.
We tried all the big name insurance companies and lots of the little ones, too. We got the same message from all of them -- your wooden shack on wooden poles in the middle of a fire and earthquake zone is not insurable. We went to a broker; she finally recommended this conglomerate called AIG. I'd never heard of them, but they were game. If you think AIG had bad investment policy, you might also include insuring our house as another example of bad decision-making. Smile.
Since the news broke back last year, AIG has been sending us interestingly smarmy creepy letters. We're your company!! We're hear to serve you. Don't worry. We are a strong firm on a strong foundation. We will be ready when you need us! (I wish we had kept them).
Early this year, the tone changed. I got an abrupt phone call: AIG is protecting its investments. Within the next month, we will need to see your property, to see if anything is actually there, and to assess its value. I rang the woman back. My tone was nastier than hers. I know its not *her* fault and that she's probably grateful for any kind of job she can have. But honestly. If they'd showed more judgment in the first place, they wouldn't be closing the door after the horse has gone -- and charging the insurance company for it.
News of the bonuses hit pretty hard. I've signed a petition -- and I want to call my so-called AIG office. But it isn't the worker person's fault. And I am still not sure anyone else will insure the house. So, it bites. Because if you insure a house, you get discounts on cars, and property ... I hate AIG. And I am disgusted with them. It makes me angry. The next time I get a smarmy letter from them, I am so replying. And so getting back to them on responsibility. *I* don't conduct my life like that. It is outrageous that a corporation (of which I now own 80%) should do the same.
I wonder what would happen if they went belly up (other than the fact that I wouldn't be able to insure my house?)
We tried all the big name insurance companies and lots of the little ones, too. We got the same message from all of them -- your wooden shack on wooden poles in the middle of a fire and earthquake zone is not insurable. We went to a broker; she finally recommended this conglomerate called AIG. I'd never heard of them, but they were game. If you think AIG had bad investment policy, you might also include insuring our house as another example of bad decision-making. Smile.
Since the news broke back last year, AIG has been sending us interestingly smarmy creepy letters. We're your company!! We're hear to serve you. Don't worry. We are a strong firm on a strong foundation. We will be ready when you need us! (I wish we had kept them).
Early this year, the tone changed. I got an abrupt phone call: AIG is protecting its investments. Within the next month, we will need to see your property, to see if anything is actually there, and to assess its value. I rang the woman back. My tone was nastier than hers. I know its not *her* fault and that she's probably grateful for any kind of job she can have. But honestly. If they'd showed more judgment in the first place, they wouldn't be closing the door after the horse has gone -- and charging the insurance company for it.
News of the bonuses hit pretty hard. I've signed a petition -- and I want to call my so-called AIG office. But it isn't the worker person's fault. And I am still not sure anyone else will insure the house. So, it bites. Because if you insure a house, you get discounts on cars, and property ... I hate AIG. And I am disgusted with them. It makes me angry. The next time I get a smarmy letter from them, I am so replying. And so getting back to them on responsibility. *I* don't conduct my life like that. It is outrageous that a corporation (of which I now own 80%) should do the same.
I wonder what would happen if they went belly up (other than the fact that I wouldn't be able to insure my house?)
Sunday, March 15, 2009
Revisiting Pain and Painful Bodies
Perhaps I want to write more about hurting bodies than I do pain. And perhaps that is my first move. I call pain, pain; it is its own thing. But I think pain and a hurting body might be two separate things.
So first: Pain is awful. There's just no other way of putting it. And there's no way to describe pain itself. You can explain the sensation of the hurt: throbbing, aching, burning, stinging, stabbing. You can also describe what the pain does to you; fear, powerlessness, tears, despondency and, yes, certain kinds of pain can be pleasure (shout out to Trinity: link further down post). But I don't know how you actually describe pain. In one of their kindnesses to us, the body and the mind seem to unite such that you can't remember precisely in the same critical way the agonizing pain of, say, childbirth or an accident, though you know it was painful, that you screamed, that you cried, that you passed out, or whatever it is you know about your experience. That absence of recall is a kindness of the body, yes, but it also says something about the hard-to-graspness of pain.
The same is true of (comparatively) lower level chronic pain. You manage to live around it; you wait, perhaps afraid, for its return. Sometimes, you can't win; you withdraw. You take a couple of days or a couple of hours -- whatever. The thing is, though, you still can't describe to those who have no pain or, at least, none on a regular basis either the pain itself or the way it shapes you. Damn pain. But yes. Pain is its own thing. A force, a power, a twitch, scowl, grunt or cry. And no. We don't talk enough about it. Not in the disability studies world -- though Tobin Siebers has done some really cool work here. Not in the medical world -- pain management is only one part of the issue. And not in the blogosphere either.
Interestingly, though, I have been noticing lately a small blogging trend of posts that talk about the experience of trying to do something with/despite hurting body parts: arms, legs, heads, hips (I've written a number of these), and backs. I see these as different. Yes, a hurting body part is painful, but writing about something as specific as this is different from writing about pain itself. Perhaps because pain is unspeakable, people -- me included -- tend to write about the experience of hurting parts.
In all of these posts (my own included), I keep coming back to what I have begun to call the "bounded-ness" of hurting body parts (in honor of all wheelchair-bounded folk). The dominant trope is simply: I can't/didn't ... my 'x' hurts. A modified version would be "I had so much difficulty with 'y' because my 'a' was hurting." I find myself walking into an immovable wall of the association of pain and restriction/limits.
Before I go on, let me be clear. Yes, pain is a stopper. It is. But I think something else is going on here in these stories of hurting parts. And whatever that something is -- I'm going to have a shot at describing it -- seriously affects how the non-disabled public understands the life and experience of the disabled public.
Most of the posts look like this. The writer describes a hurting body part -- say a knee. It hurts a lot. It prevents the writer from doing what she wants -- where "it" is some combination of the knee itself (not functioning optimally) and the pain (her knee hurts when she tries to get it to function). She's done PT; she's had surgery; the thing still isn't working right. She imagines that this is what it is like to be disabled. I make no judgment about whether or not life with this knee rises to the level of a disability; I can see that in some cases it might, in others it might not. I have no right to express an opinion anyway.
My concern is with the construction of disability that arises from this experience. I want there to be a raft of writing, art, dance, theater, film that erases that "bounded-ness." That isn't to say that the limitations aren't real -- I won't be running (wheeled or footed) any marathons anytime soon; I do know that there are certain things that are just off limits to me. And, yes, some of them are pretty basic; I weep for those losses. But I do think that there is more to the experience of living with hurting bodies than the "can't." And I don't say that in the polly-anna, try harder, overcome way. I mean that in a deeply political and cultural way.
Disability, hurting body parts, and pain certainly have their associated "can'ts," but I don't see them as definitive of disabled life. The story of "can't" and "won't" is part of the narrative of boundedness. For far too many non-disabled folk, the hurt defines the disability and dominates the life. They can't imagine the pleasure in our lives -- in our pain, our hurting or not disabled bodies, or our assistive equipment; I love Kay Olson's post@thegimpparade on this. I now add Trin's post on pain and pleasure to my library of references.
The stories of the failure of people's body parts are deeply personal -- they show bloggers and readers at their most vulnerable and at their most compassionate -- but that hurt, that failure to function "normally" isn't all there is to the story. And I grow frustrated when I see them marked here and there in the blogosphere as narratives of disability. I walk a fine line here, given the number of posts I've written on the topic of my hurting, x, y, and z.... But it is time to say it again. Pain is disabling, but disability is more than than hurt, the impairment, and more even than the attempts to overcome the hurt. Dare I go so far as to say -- *disability* is the wind in your hair, the sun on your back, the fuck you, the acceptance, the culture, the art, the humour, the rebellion, the work, the pleasure, and, yes, the living in pain; this is living unbounded.
So first: Pain is awful. There's just no other way of putting it. And there's no way to describe pain itself. You can explain the sensation of the hurt: throbbing, aching, burning, stinging, stabbing. You can also describe what the pain does to you; fear, powerlessness, tears, despondency and, yes, certain kinds of pain can be pleasure (shout out to Trinity: link further down post). But I don't know how you actually describe pain. In one of their kindnesses to us, the body and the mind seem to unite such that you can't remember precisely in the same critical way the agonizing pain of, say, childbirth or an accident, though you know it was painful, that you screamed, that you cried, that you passed out, or whatever it is you know about your experience. That absence of recall is a kindness of the body, yes, but it also says something about the hard-to-graspness of pain.
The same is true of (comparatively) lower level chronic pain. You manage to live around it; you wait, perhaps afraid, for its return. Sometimes, you can't win; you withdraw. You take a couple of days or a couple of hours -- whatever. The thing is, though, you still can't describe to those who have no pain or, at least, none on a regular basis either the pain itself or the way it shapes you. Damn pain. But yes. Pain is its own thing. A force, a power, a twitch, scowl, grunt or cry. And no. We don't talk enough about it. Not in the disability studies world -- though Tobin Siebers has done some really cool work here. Not in the medical world -- pain management is only one part of the issue. And not in the blogosphere either.
Interestingly, though, I have been noticing lately a small blogging trend of posts that talk about the experience of trying to do something with/despite hurting body parts: arms, legs, heads, hips (I've written a number of these), and backs. I see these as different. Yes, a hurting body part is painful, but writing about something as specific as this is different from writing about pain itself. Perhaps because pain is unspeakable, people -- me included -- tend to write about the experience of hurting parts.
In all of these posts (my own included), I keep coming back to what I have begun to call the "bounded-ness" of hurting body parts (in honor of all wheelchair-bounded folk). The dominant trope is simply: I can't/didn't ... my 'x' hurts. A modified version would be "I had so much difficulty with 'y' because my 'a' was hurting." I find myself walking into an immovable wall of the association of pain and restriction/limits.
Before I go on, let me be clear. Yes, pain is a stopper. It is. But I think something else is going on here in these stories of hurting parts. And whatever that something is -- I'm going to have a shot at describing it -- seriously affects how the non-disabled public understands the life and experience of the disabled public.
Most of the posts look like this. The writer describes a hurting body part -- say a knee. It hurts a lot. It prevents the writer from doing what she wants -- where "it" is some combination of the knee itself (not functioning optimally) and the pain (her knee hurts when she tries to get it to function). She's done PT; she's had surgery; the thing still isn't working right. She imagines that this is what it is like to be disabled. I make no judgment about whether or not life with this knee rises to the level of a disability; I can see that in some cases it might, in others it might not. I have no right to express an opinion anyway.
My concern is with the construction of disability that arises from this experience. I want there to be a raft of writing, art, dance, theater, film that erases that "bounded-ness." That isn't to say that the limitations aren't real -- I won't be running (wheeled or footed) any marathons anytime soon; I do know that there are certain things that are just off limits to me. And, yes, some of them are pretty basic; I weep for those losses. But I do think that there is more to the experience of living with hurting bodies than the "can't." And I don't say that in the polly-anna, try harder, overcome way. I mean that in a deeply political and cultural way.
Disability, hurting body parts, and pain certainly have their associated "can'ts," but I don't see them as definitive of disabled life. The story of "can't" and "won't" is part of the narrative of boundedness. For far too many non-disabled folk, the hurt defines the disability and dominates the life. They can't imagine the pleasure in our lives -- in our pain, our hurting or not disabled bodies, or our assistive equipment; I love Kay Olson's post@thegimpparade on this. I now add Trin's post on pain and pleasure to my library of references.
The stories of the failure of people's body parts are deeply personal -- they show bloggers and readers at their most vulnerable and at their most compassionate -- but that hurt, that failure to function "normally" isn't all there is to the story. And I grow frustrated when I see them marked here and there in the blogosphere as narratives of disability. I walk a fine line here, given the number of posts I've written on the topic of my hurting, x, y, and z.... But it is time to say it again. Pain is disabling, but disability is more than than hurt, the impairment, and more even than the attempts to overcome the hurt. Dare I go so far as to say -- *disability* is the wind in your hair, the sun on your back, the fuck you, the acceptance, the culture, the art, the humour, the rebellion, the work, the pleasure, and, yes, the living in pain; this is living unbounded.
Saturday, March 14, 2009
Why I Haven't Substantially Redesigned My Site Recently
I can't. I can't. It's deeply meaningful to me the way it is. OK. For those of you who get me in a reader or by email -- (oh, BTW... reading me by email or in a reader or by RSS will make life easier for the 5% of you who visit my site between 150-200 times a month. I don't post that often!!) -- I have some version of this image as the banner header for my site. 
I keep editing it because I can't find the right version for it yet. It speaks to me so deeply, and not even this version of it is right.
Post includes a small black and white and sepia image of me sitting in my chair. I am leaning forward with my head down with my arms extended so that they make the shape of a birdwing.
The picture was taken a while ago -- shortly after I started dancing and shortly after I saw the Urban Bush Women and the Alvin Ailey Company perform in New York -- Wizard was photographing me across the street in the parking lot of a large apartment complex. As you can see, the line is pretty much right, except for the fingers: I could not get them to relax into a neutral line. But there you are. Or there I am. Dropped into the birdshape.
I've been wanting to write about the joy of dancing, the beauty of partnering wild, the thrill of partnering when you know that both you and your partner can do anything. But, for a while now, I have been contemplating, worrying, chewing on the question of who I am as a dancer. Having been off for so long, I am a little worried about who I am and who I might be as a dancer.
There are a number of ways that I think able-bodied dancers know who they are as dancers. If they've been at it a while -- and for the professionals I see and work with, a "while" can be anything from childhood to college -- they have training, technique, and a vocabulary that comes with them. They've been trained as modern dancers, ballet, tap, jazz dancers (or whatever). One of the ways they know who they are is tradition; they know who they are in the context of the traditions they've been trained in.
Dancers aren't just bodies; we are people whose brains and tastes add as much to our movement vocabulary as our abilities. Over time, this experience builds and builds; my non-disabled colleagues are present in their bodies and their dance. They come to know themselves, their possibilities, and their habits. They have a reservoir to draw on -- their history, their previous work, their training, the culture of their dance city (this adds more than you would think... two years ago was the SF year of the finger flap. Almost every performance piece I saw had one ... NYC didn't care so much for it. Now, SF, too has moved on).
I don't really have a tradition in the conventional sense. I have taken ballet lessons, but I am not a ballet dancer. I have taken modern dance classes, but I am not a conventional modern dancer. Most of my work has been done in physically integrated dance -- and if PID offers one a convention, it is training in the conditions and potential of one's own body (including assistive equipment) and the bodies of the other dancers. Given this context, you can imagine that it was a shock and pleasant surprise to find my body responding to a dance line associated with a racially identified form of dance.
I drop into that bird position, and I feel at home. I drop into that bird position, and my body feels as if it has been there for centuries; it takes on the history -- movement and political -- of all that I am and all that I can be seen to be. When I drop into that bird position, I feel safe, secure, and strong. I love the way it blends an African dance shape with a wheelchair. I love the contradictions it seems to imply. That's why I haven't updated my site. That picture reminds me of who I am as a dancer. It invites me to become who I might be as a dancer.
And when I look at it, I want to begin to dance. I will be going back to work soon -- I'm making more progress every week. But more on that one later.
I keep editing it because I can't find the right version for it yet. It speaks to me so deeply, and not even this version of it is right.Post includes a small black and white and sepia image of me sitting in my chair. I am leaning forward with my head down with my arms extended so that they make the shape of a birdwing.
The picture was taken a while ago -- shortly after I started dancing and shortly after I saw the Urban Bush Women and the Alvin Ailey Company perform in New York -- Wizard was photographing me across the street in the parking lot of a large apartment complex. As you can see, the line is pretty much right, except for the fingers: I could not get them to relax into a neutral line. But there you are. Or there I am. Dropped into the birdshape.
I've been wanting to write about the joy of dancing, the beauty of partnering wild, the thrill of partnering when you know that both you and your partner can do anything. But, for a while now, I have been contemplating, worrying, chewing on the question of who I am as a dancer. Having been off for so long, I am a little worried about who I am and who I might be as a dancer.
There are a number of ways that I think able-bodied dancers know who they are as dancers. If they've been at it a while -- and for the professionals I see and work with, a "while" can be anything from childhood to college -- they have training, technique, and a vocabulary that comes with them. They've been trained as modern dancers, ballet, tap, jazz dancers (or whatever). One of the ways they know who they are is tradition; they know who they are in the context of the traditions they've been trained in.
Dancers aren't just bodies; we are people whose brains and tastes add as much to our movement vocabulary as our abilities. Over time, this experience builds and builds; my non-disabled colleagues are present in their bodies and their dance. They come to know themselves, their possibilities, and their habits. They have a reservoir to draw on -- their history, their previous work, their training, the culture of their dance city (this adds more than you would think... two years ago was the SF year of the finger flap. Almost every performance piece I saw had one ... NYC didn't care so much for it. Now, SF, too has moved on).
I don't really have a tradition in the conventional sense. I have taken ballet lessons, but I am not a ballet dancer. I have taken modern dance classes, but I am not a conventional modern dancer. Most of my work has been done in physically integrated dance -- and if PID offers one a convention, it is training in the conditions and potential of one's own body (including assistive equipment) and the bodies of the other dancers. Given this context, you can imagine that it was a shock and pleasant surprise to find my body responding to a dance line associated with a racially identified form of dance.
I drop into that bird position, and I feel at home. I drop into that bird position, and my body feels as if it has been there for centuries; it takes on the history -- movement and political -- of all that I am and all that I can be seen to be. When I drop into that bird position, I feel safe, secure, and strong. I love the way it blends an African dance shape with a wheelchair. I love the contradictions it seems to imply. That's why I haven't updated my site. That picture reminds me of who I am as a dancer. It invites me to become who I might be as a dancer.
And when I look at it, I want to begin to dance. I will be going back to work soon -- I'm making more progress every week. But more on that one later.
Monday, March 9, 2009
Activism Works!
Two things: I have had a little frisson of activist success, and a cause to be activist about.
For a while now, I have been complaining here and to the relevant people about the lack of an accessible bathroom in the United Club lounge at JFK. (Oh! the horror!). But it pissed me off. I fly United for somewhere in between 80-120K miles a freakin' year. And, thanks to the Wizard, I have a lounge membership. As I have detailed in a variety of places on this blog, the SFO one rocks: you can pee in a suite. The JFK one has no accessible stalls, no turning space between the hallway, stalls, and sinks, and, worse, you get trapped in the double doorway vestibule. You can't open the door infront of you because it only pulls in and you can't pull it back and push away the door behind you, keep the door open, and leave. The last time I attempted to get in the space, I had to wait for someone else to let me out.
About two months ago, I was fedup with the situation. So, I called them. And instead of negotiating with the person on the end of the phone, I asked for a supervisor. I said that I had complained to the United JFK front desk staff, to the JFK airport operations person, and to the lounge people themselves and that I had received a variety of responses in the past -- United saying they didn't do the facilities; JFK saying they weren't obliged because there were restrooms elsewhere in the building; JFK saying it was United's problem because they were responsible for interior decoration; United saying it didn't run the lounges. I took a deep breath. I explained that this was bullshit [sic], that United provided restrooms elsewhere in their lounges -- SFO, for example -- and that I had had the runaround from everyone. I heard myself continue: "this is just a friendly call, I want you to know, but I also want you to know that friendly or not, this is an unacceptable situation. I don't want to have to take further action."
I heard nothing, of course.
Yesterday, I was leaving the lounge when a staff person called over. "Was I going to the bathroom? Why didn't I just use the restroom here?" I just spluttered in rage at her. Quickly, she assured me that, in fact, just recently, they had put in a handicapped accessible restroom (in the first class division). It was all new. And it was all my doing! She smiled broadly. Would I like to use it? Grouchily, I explained that I didn't have a first class ticket. She escorted me in. I went. AND yes. It was an accessible restroom. They had an accessible stall. They reworked the entrance; no hallway to be trapped in. I came and went. With a small sense of satisfaction.
Activism Works. Please help the Autism Self Advocacy Network in their cause against Lindt Chocolates and Autism Speaks. (You may remember the whole Autism Speaks "ransom notes" and other awful campaigns from last year? eeuw).
Anyway. The deal is that Lindt is giving money to them. Help Lindt, the maker of oh-so-yummy chocolates change their minds!! The letter below is from the President of the Autism Self-Advocacy Network.
Hello,
Recently, Lindt Chocolates announced a fundraising campaign for Autism Speaks, an organization that excludes autistic people themselves from its decision-making, uses offensive and unethical advertising tactics based on fear and pity and raises funds for the eugenic elimination of the autism spectrum. Too often, money raised to improve our lives goes towards organizations that don't speak for us and work against our interests. People with disabilities of all kinds have a right to be at the center of the decisions made about us, not standing at the sidelines. We've started an action alert to tell Lindt Chocolates that its money is better used elsewhere, with charities whose work will benefit the lives of autistic people rather than aim to eliminate us. Click here to go to our action alert or go to: http://www.change.org/autisticadvocacy/actions/view/tell_lindt_chocolates_that_autism_speaks_doesnt_speak_for_us
The action alert allows you to write your own e-mail or use a form letter already available, however, for those of you who want to write your own e-mail or can't use the action alert for whatever reason, here are some talking points on why Autism Speaks is bad for the autism and autistic communities. Lindt Chocolate's e-mail is here: lindt@qualitycustomercare.com
-Autism Speaks is an autism organization that claims to speak for autistic people, without a single autistic person on its board of directors or leadership. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals and others to achieve quality of life and equality of opportunity. Autism Speaks' exclusionary policies are an embarrassment to itself and its funders.
-Autism Speaks advertising is highly offensive to autistic people and our families, with ads that compare a life on the autism spectrum to a car accident, being struck by lightning, a terminal illness and other fatal situations. Rather than work to decrease stigma and increase respect for autistic people, Autism Speaks' advertising fosters pity, shame and fear, suggesting that our very lives are mistakes and burdens.
-Autism Speaks' fundraising goes towards genetic research aimed at developing a prenatal test with potentially eugenic applications. Given the fact that 92% of fetuses that test positive for Down Syndrome are selectively aborted prior to birth, we are concerned by the prospect of a similar result in respect to the autism spectrum. This is an issue of discrimination, wholly separate from typical abortion politics. Money raised in the name of autistic people should go towards opportunities for quality of life, not towards our elimination. Autism Speaks research agenda is overwhelmingly focused on causation and prevention rather than research initiatives that might support quality of life for all autistic people. This drains support from initiatives that stand to improve the quality of life of autistic people, such as services, supports and education, which Autism Speaks supports in only a tiny fraction of its massive budget.
Thank you to those who alerted us of this situation and we urge your immediate support. Together, our voices cannot be ignored. Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
For a while now, I have been complaining here and to the relevant people about the lack of an accessible bathroom in the United Club lounge at JFK. (Oh! the horror!). But it pissed me off. I fly United for somewhere in between 80-120K miles a freakin' year. And, thanks to the Wizard, I have a lounge membership. As I have detailed in a variety of places on this blog, the SFO one rocks: you can pee in a suite. The JFK one has no accessible stalls, no turning space between the hallway, stalls, and sinks, and, worse, you get trapped in the double doorway vestibule. You can't open the door infront of you because it only pulls in and you can't pull it back and push away the door behind you, keep the door open, and leave. The last time I attempted to get in the space, I had to wait for someone else to let me out.
About two months ago, I was fedup with the situation. So, I called them. And instead of negotiating with the person on the end of the phone, I asked for a supervisor. I said that I had complained to the United JFK front desk staff, to the JFK airport operations person, and to the lounge people themselves and that I had received a variety of responses in the past -- United saying they didn't do the facilities; JFK saying they weren't obliged because there were restrooms elsewhere in the building; JFK saying it was United's problem because they were responsible for interior decoration; United saying it didn't run the lounges. I took a deep breath. I explained that this was bullshit [sic], that United provided restrooms elsewhere in their lounges -- SFO, for example -- and that I had had the runaround from everyone. I heard myself continue: "this is just a friendly call, I want you to know, but I also want you to know that friendly or not, this is an unacceptable situation. I don't want to have to take further action."
I heard nothing, of course.
Yesterday, I was leaving the lounge when a staff person called over. "Was I going to the bathroom? Why didn't I just use the restroom here?" I just spluttered in rage at her. Quickly, she assured me that, in fact, just recently, they had put in a handicapped accessible restroom (in the first class division). It was all new. And it was all my doing! She smiled broadly. Would I like to use it? Grouchily, I explained that I didn't have a first class ticket. She escorted me in. I went. AND yes. It was an accessible restroom. They had an accessible stall. They reworked the entrance; no hallway to be trapped in. I came and went. With a small sense of satisfaction.
Activism Works. Please help the Autism Self Advocacy Network in their cause against Lindt Chocolates and Autism Speaks. (You may remember the whole Autism Speaks "ransom notes" and other awful campaigns from last year? eeuw).
Anyway. The deal is that Lindt is giving money to them. Help Lindt, the maker of oh-so-yummy chocolates change their minds!! The letter below is from the President of the Autism Self-Advocacy Network.
Hello,
Recently, Lindt Chocolates announced a fundraising campaign for Autism Speaks, an organization that excludes autistic people themselves from its decision-making, uses offensive and unethical advertising tactics based on fear and pity and raises funds for the eugenic elimination of the autism spectrum. Too often, money raised to improve our lives goes towards organizations that don't speak for us and work against our interests. People with disabilities of all kinds have a right to be at the center of the decisions made about us, not standing at the sidelines. We've started an action alert to tell Lindt Chocolates that its money is better used elsewhere, with charities whose work will benefit the lives of autistic people rather than aim to eliminate us. Click here to go to our action alert or go to: http://www.change.org/
The action alert allows you to write your own e-mail or use a form letter already available, however, for those of you who want to write your own e-mail or can't use the action alert for whatever reason, here are some talking points on why Autism Speaks is bad for the autism and autistic communities. Lindt Chocolate's e-mail is here: lindt@qualitycustomercare.com
-Autism Speaks is an autism organization that claims to speak for autistic people, without a single autistic person on its board of directors or leadership. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals and others to achieve quality of life and equality of opportunity. Autism Speaks' exclusionary policies are an embarrassment to itself and its funders.
-Autism Speaks advertising is highly offensive to autistic people and our families, with ads that compare a life on the autism spectrum to a car accident, being struck by lightning, a terminal illness and other fatal situations. Rather than work to decrease stigma and increase respect for autistic people, Autism Speaks' advertising fosters pity, shame and fear, suggesting that our very lives are mistakes and burdens.
-Autism Speaks' fundraising goes towards genetic research aimed at developing a prenatal test with potentially eugenic applications. Given the fact that 92% of fetuses that test positive for Down Syndrome are selectively aborted prior to birth, we are concerned by the prospect of a similar result in respect to the autism spectrum. This is an issue of discrimination, wholly separate from typical abortion politics. Money raised in the name of autistic people should go towards opportunities for quality of life, not towards our elimination. Autism Speaks research agenda is overwhelmingly focused on causation and prevention rather than research initiatives that might support quality of life for all autistic people. This drains support from initiatives that stand to improve the quality of life of autistic people, such as services, supports and education, which Autism Speaks supports in only a tiny fraction of its massive budget.
Thank you to those who alerted us of this situation and we urge your immediate support. Together, our voices cannot be ignored. Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.
Sunday, March 8, 2009
The Cost of Living
My title is a reference to the awesome, awesome piece of DV8 dance theater by the same name. If you don't know them or the film, check it out.
It's a gutwrenchingly beautiful duet featuring David Toole; Toole "interrupts" what looks to be a warmup session before a ballet class. He slips in between the dancers' legs and, suddenly, before you know it, there's a duet -- like no other duet. The bodies weave in and out of each other with fluidity and grace. Their respective strengths take both dancers into new lines, new potential; then, abruptly, the nondisabled dancer loses interest. No reason is given. David dances on for a sec, moves towards her, moves away, and is called away by his friend. It's just ambiguous enough to make you question your initial perception of who stopped dancing first. Oh, god. I love that duet.
Anyway. The dance isn't the point of this post. I'm interested in prices. Costs. And payment. You can pay up, pay down, pay it forward, make a down payment, but none of these phrases really get to the cost of disabled living.
For the moment, let's look at some of the obvious costs. Assistive equipment. The piece of foam that is my backrest is $100s. For a piece of foam! I went to the local foam store and asked if they could replace it for me -- with a better fit. They said they couldn't match the foam exactly, but then, they did. They said they couldn't do the mold of the cup exactly -- something about heating versus cutting -- but then, they came up with something that came so damn close. I paid $25. It's not exactly the same, but it gives firm support and it fits better. Moreover, I can afford to replace it far more frequently than the original which can't be custom fitted precisely.
Financial costs aside -- no, I'm not underestimating them -- I also want to talk about the invisible costs we pay. The "invisible labour" (thanks to ThatGirl@thatgirlhasissues.blogspot.com for opening my mind on this) that we have to do with ourselves and our bodies, the work we have to complete before we leave the house.
You all know of the physical things you have to do, but have you also thought about the emotional work that accompanies that physicality (in some cases). Wizard and I have been working for a while now with the slowness of my movement and of wheeled life in general. It takes me forever to get anywhere and even longer if I have to go to an airport, take transportation, move through lines of other people. It just takes a long time -- and even more so when you can't depend on non-disabled people: the wheelchair freakout factor can really get in your way.
Only recently, however, have we begun to talk about the emotional work that I do in order to seem bright cheery happy and together in public. It takes work. It does. And I believe it takes work for Wizard (though we aren't there in the talking process yet). All those small interventions I (we? you?) do with myself -- even if it is something as small as catching a thought like "it doesn't matter because I am in a wheelchair," it is work. And necessary work.
I'm posting the video above because dance reminds me, underscores to me the power of disabled movement and how much I want to be there, doing it.
It's a gutwrenchingly beautiful duet featuring David Toole; Toole "interrupts" what looks to be a warmup session before a ballet class. He slips in between the dancers' legs and, suddenly, before you know it, there's a duet -- like no other duet. The bodies weave in and out of each other with fluidity and grace. Their respective strengths take both dancers into new lines, new potential; then, abruptly, the nondisabled dancer loses interest. No reason is given. David dances on for a sec, moves towards her, moves away, and is called away by his friend. It's just ambiguous enough to make you question your initial perception of who stopped dancing first. Oh, god. I love that duet.
Anyway. The dance isn't the point of this post. I'm interested in prices. Costs. And payment. You can pay up, pay down, pay it forward, make a down payment, but none of these phrases really get to the cost of disabled living.
For the moment, let's look at some of the obvious costs. Assistive equipment. The piece of foam that is my backrest is $100s. For a piece of foam! I went to the local foam store and asked if they could replace it for me -- with a better fit. They said they couldn't match the foam exactly, but then, they did. They said they couldn't do the mold of the cup exactly -- something about heating versus cutting -- but then, they came up with something that came so damn close. I paid $25. It's not exactly the same, but it gives firm support and it fits better. Moreover, I can afford to replace it far more frequently than the original which can't be custom fitted precisely.
Financial costs aside -- no, I'm not underestimating them -- I also want to talk about the invisible costs we pay. The "invisible labour" (thanks to ThatGirl@thatgirlhasissues.blogspot.com for opening my mind on this) that we have to do with ourselves and our bodies, the work we have to complete before we leave the house.
You all know of the physical things you have to do, but have you also thought about the emotional work that accompanies that physicality (in some cases). Wizard and I have been working for a while now with the slowness of my movement and of wheeled life in general. It takes me forever to get anywhere and even longer if I have to go to an airport, take transportation, move through lines of other people. It just takes a long time -- and even more so when you can't depend on non-disabled people: the wheelchair freakout factor can really get in your way.
Only recently, however, have we begun to talk about the emotional work that I do in order to seem bright cheery happy and together in public. It takes work. It does. And I believe it takes work for Wizard (though we aren't there in the talking process yet). All those small interventions I (we? you?) do with myself -- even if it is something as small as catching a thought like "it doesn't matter because I am in a wheelchair," it is work. And necessary work.
I'm posting the video above because dance reminds me, underscores to me the power of disabled movement and how much I want to be there, doing it.
Saturday, March 7, 2009
Plans Delayed: Access, Staff, and the Bathroom
I had plans this week. I was going to do everything -- be everywhere, see everything, hang out with everyone. I had social engagements everyday -- sometimes more than one a day. I had physical therapy, too. And I had life responsibilities.
I didn't make it. I let people down. And I wasn't able to live up to all my commitments. We all have weeks like that, I suppose. But that doesn't mean that I feel good about it.
At one of the two events I managed to attend, I encountered a bathroom issue. Surprise! It was a big event for perhaps thousands of people? Anyway. There were a couple of hundred staff working the event at least. I track down the restroom; I'm ready to go. One of the security guards takes me in, assuring me as she did so that I could use the big one. I bristle: I don't need her permission to use the big one. It's for wheelchair users.
When I open the door, I feel horrible. A radio plays in the corner. Access to the toilet itself is somewhat blocked by a pile of neatly stacked boxes. On top of the boxes are a shake, some half-eaten sushi, a couple of napkins, and a paperbag with some more food inside. It's not a toilet space; it has literally become a restroom, a place for the staff, personalized by the staff, and, yes, a lunch-eating space.
The event planners should have arranged a rest space for the staff. No one should have to retreat to the toilet. I understand why the staff picked the disabled toilet; I get that. It was an awful choice to have to make -- would you leave your food there? Would you rest there -- by choice?
I didn't make it. I let people down. And I wasn't able to live up to all my commitments. We all have weeks like that, I suppose. But that doesn't mean that I feel good about it.
At one of the two events I managed to attend, I encountered a bathroom issue. Surprise! It was a big event for perhaps thousands of people? Anyway. There were a couple of hundred staff working the event at least. I track down the restroom; I'm ready to go. One of the security guards takes me in, assuring me as she did so that I could use the big one. I bristle: I don't need her permission to use the big one. It's for wheelchair users.
When I open the door, I feel horrible. A radio plays in the corner. Access to the toilet itself is somewhat blocked by a pile of neatly stacked boxes. On top of the boxes are a shake, some half-eaten sushi, a couple of napkins, and a paperbag with some more food inside. It's not a toilet space; it has literally become a restroom, a place for the staff, personalized by the staff, and, yes, a lunch-eating space.
The event planners should have arranged a rest space for the staff. No one should have to retreat to the toilet. I understand why the staff picked the disabled toilet; I get that. It was an awful choice to have to make -- would you leave your food there? Would you rest there -- by choice?
Thursday, March 5, 2009
Wanna Be On TV
I'm of two minds about this one. But in the name of getting more disabled people on tv.
Yo, People!
Sightless in the City (their words, not mine) wants you! Only if, of course, you are sightless. And it's not clear how they are defining sightless -- images of so many bad cliches. But if you happen to think you could be sightless -- god, that's such an awful word -- go for it. Just don't expect to get paid.
Actually, I feel really bad about this one. Sightless just grates beyond all belief. Blind in the City is sexier to me than "sightless."
H/t LCL of dnnnyc -- this message is from their listserv.
I'm also keen to speak to some families with young kids where a parent or child is blind, or even multiple vision impaired people in the same family. If you can think of anyone who would be interested, it would be awesome if you could reach out to them or pass on their details. It is important that the people involved are confident and open to the idea of filming. If you can think of other candidates that would be of interest then please let me know.
In addition is there anywhere in the center that we can post a message for your members?
To begin with we will be filming some demo material which would only take a day or two. Once we begin filming the series, we would be looking for some time commitment from the participants, but can work around their schedule. There is definitely an opportunity for compensation for the participants down the road.
I would be very interested in visiting your facility and speaking more with you about our project. Also please feel free to check out our website http://www.kpitv.com for further information on our company.
Yo, People!
Sightless in the City (their words, not mine) wants you! Only if, of course, you are sightless. And it's not clear how they are defining sightless -- images of so many bad cliches. But if you happen to think you could be sightless -- god, that's such an awful word -- go for it. Just don't expect to get paid.
Actually, I feel really bad about this one. Sightless just grates beyond all belief. Blind in the City is sexier to me than "sightless."
H/t LCL of dnnnyc -- this message is from their listserv.
We are currently casting a reality series called "Sightless in the City." This show is being produced for Bravo/Discovery Health Network. The basic premise is to follow our characters in their day to day life as they navigate the city without sight. We're looking for a range of people, young professionals, families, adults, children. We are looking for people with active lives, who have a positive attitude towards their disability, the confidence to be around the cameras and the desire to tell their story. The series will be an upbeat look at how blind people go about their busy lives in New York City.
We are looking for a diverse group of people, of all ages and all races. We want to follow them in their daily lives, at home, work, buying groceries, taking their kids to school and riding the subway. In addition we'd love to include any activities/events that your organization is involved with. For example classes or fundraising events. Hopefully this will be a great opportunity to get word out there about your organization. I'd love to be able to follow someone as they train for the marathon, attend college or maybe even a young single professional who likes to go out and socialize at bars.
I'm also keen to speak to some families with young kids where a parent or child is blind, or even multiple vision impaired people in the same family. If you can think of anyone who would be interested, it would be awesome if you could reach out to them or pass on their details. It is important that the people involved are confident and open to the idea of filming. If you can think of other candidates that would be of interest then please let me know.
In addition is there anywhere in the center that we can post a message for your members?
To begin with we will be filming some demo material which would only take a day or two. Once we begin filming the series, we would be looking for some time commitment from the participants, but can work around their schedule. There is definitely an opportunity for compensation for the participants down the road.
I would be very interested in visiting your facility and speaking more with you about our project. Also please feel free to check out our website http://www.kpitv.com for further information on our company.
Best,
Joanne Azern
E jazern@kpitv.com
E jazern@kpitv.com
Monday, March 2, 2009
How We Are Friends With Each Other
A subtitle for this post might be how I have disabled friends.
I have a somewhat distributed life. And that means I don't see my friends all that often. Even if you discount the New York -San Francisco part of my life, I have friends in different countries, and all over the US. I even have friends who live close (say an hour or two away) to my hub cities whom I don't see all that often because travel is a hassle in itself.
I work hard to maintain my friendships long distance, and I like to think that I do so fairly well. That I am able to do so is usually a function of the fact that my friends and I have spent concentrated periods of formative time with each other. We went to university and/or grad school; we were roomates, worked the same kinds of jobs, etc. Now, we only see each other once a year or so, but we phone in, we send email, we talk ... For some people, this doesn't work -- I miss a crucial life event or we are not able to connect as often as necessary. Sometimes, it doesn't work because I, we, people change -- the foundation of our friendship becomes less relevant to one of us. I, for example, don't keep up as much with the world of my first job; my friend who works there still has had two children. We've found it very hard to keep some sense of connection going, and our friendship sadly is fading.
My disabled friends are also spread all over the country, yet they are different from my other friends. Many of you are people I have not spent any significant time with; some of you I have not met in person at all. And yet. I count you as my friends. I would love to have coffee with you, see a movie, drink a glass ... I probably won't get to do that, sadly. But our friendship I find vital in my life.
I am proposing a kind of crip friendship. I keep seeing stuff about how the internet is a great leveler, how it enables people to connect, etc. I am seeing this in a practical way. You, my crip friends, I barely know in your/our "real" lives. That doesn't diminish your importance to me: ours is a friendship of ideas, narrated experience, and spirit. No. Spirit. Ideas. Narrated Experience. SPINE. Ours are friendships of the spine.
Wow. Goose pimples. That just came to me.
Think, for a second, about the spine. It hosts the site of many of our vulnerabilities -- the spinal cord. And yet, as language would have it, it is the location of our courage. We have backbone; we show our spine. We are spiny, thorny, prickly, and, well, brave. The bony prominences of the vertebrae, its twists, its irregularities, its contractions, and flexibility and frozen flexions bear witness to the twists and curves of our relationships.
I may not ever see you in your world, but I am there in spirit; I will listen to your narrated experience and share my own. We can and will, I hope, engage in the deepest friendships of ideas. We will surge, float, and thunder through our ideas. And when we hang up the phone, disconnect the webcam, we will retreat back into our own lives, deeply and forever changed. The bone of the spine -- its ideas, its spirit, the narrating of its experience -- gives shape to the tissue and network of our lives. It supports us as we muscle through and literally gives us the nerve to do so.
If I seem intense, it is because I see our "spines" as being interwoven; we can't go to the coffeeshop or take a walk to build intimacy. Will you brace yourselves for the intimacy that comes with intensity? Can we build that brace so that it offers support in a moving way -- not in the correcting, reforming way of medical devices but in the way that allows our friendship to lift us both up to do something extraordinary.
If I shoot ideas at you rat-a-tat-tat, will you soak them up in spirit and engage with narration and experience? Because I do think it is important for us to connect with each other, to lightly peel back our skins and stare deeply at the bone. To fold the muscle back over those scores and seal the skin with new, soft tissue. I want to hold your hand, as we both look down through the scars to the nerves that make you move. I want you to restrain my muscle as we peer and probe, softly at first, down to the white grey bone of my spine.
I have a somewhat distributed life. And that means I don't see my friends all that often. Even if you discount the New York -San Francisco part of my life, I have friends in different countries, and all over the US. I even have friends who live close (say an hour or two away) to my hub cities whom I don't see all that often because travel is a hassle in itself.
I work hard to maintain my friendships long distance, and I like to think that I do so fairly well. That I am able to do so is usually a function of the fact that my friends and I have spent concentrated periods of formative time with each other. We went to university and/or grad school; we were roomates, worked the same kinds of jobs, etc. Now, we only see each other once a year or so, but we phone in, we send email, we talk ... For some people, this doesn't work -- I miss a crucial life event or we are not able to connect as often as necessary. Sometimes, it doesn't work because I, we, people change -- the foundation of our friendship becomes less relevant to one of us. I, for example, don't keep up as much with the world of my first job; my friend who works there still has had two children. We've found it very hard to keep some sense of connection going, and our friendship sadly is fading.
My disabled friends are also spread all over the country, yet they are different from my other friends. Many of you are people I have not spent any significant time with; some of you I have not met in person at all. And yet. I count you as my friends. I would love to have coffee with you, see a movie, drink a glass ... I probably won't get to do that, sadly. But our friendship I find vital in my life.
I am proposing a kind of crip friendship. I keep seeing stuff about how the internet is a great leveler, how it enables people to connect, etc. I am seeing this in a practical way. You, my crip friends, I barely know in your/our "real" lives. That doesn't diminish your importance to me: ours is a friendship of ideas, narrated experience, and spirit. No. Spirit. Ideas. Narrated Experience. SPINE. Ours are friendships of the spine.
Wow. Goose pimples. That just came to me.
Think, for a second, about the spine. It hosts the site of many of our vulnerabilities -- the spinal cord. And yet, as language would have it, it is the location of our courage. We have backbone; we show our spine. We are spiny, thorny, prickly, and, well, brave. The bony prominences of the vertebrae, its twists, its irregularities, its contractions, and flexibility and frozen flexions bear witness to the twists and curves of our relationships.
I may not ever see you in your world, but I am there in spirit; I will listen to your narrated experience and share my own. We can and will, I hope, engage in the deepest friendships of ideas. We will surge, float, and thunder through our ideas. And when we hang up the phone, disconnect the webcam, we will retreat back into our own lives, deeply and forever changed. The bone of the spine -- its ideas, its spirit, the narrating of its experience -- gives shape to the tissue and network of our lives. It supports us as we muscle through and literally gives us the nerve to do so.
If I seem intense, it is because I see our "spines" as being interwoven; we can't go to the coffeeshop or take a walk to build intimacy. Will you brace yourselves for the intimacy that comes with intensity? Can we build that brace so that it offers support in a moving way -- not in the correcting, reforming way of medical devices but in the way that allows our friendship to lift us both up to do something extraordinary.
If I shoot ideas at you rat-a-tat-tat, will you soak them up in spirit and engage with narration and experience? Because I do think it is important for us to connect with each other, to lightly peel back our skins and stare deeply at the bone. To fold the muscle back over those scores and seal the skin with new, soft tissue. I want to hold your hand, as we both look down through the scars to the nerves that make you move. I want you to restrain my muscle as we peer and probe, softly at first, down to the white grey bone of my spine.
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