Friday, September 25, 2009
Moving On
I paced the apartment. I started a routine. I would jog in front of the window. "Don't open that. Get away from there. They can't know you are here." Then, I would walk back and forth, reimagining the sweat of frustration and cabin fever as the aerobic burning of calories. I was studying and writing papers while staying with Grandma. Grandma, I recall, knew how to walk; she got on her tiny rowing machine -- a device that someone had left in payment for the clothes she had sewn. "One foot in front of the other," she called, laughing at the delicious irony. We exercised together, but I felt cooped.
I was studying hard for qualifying exams. I had gone through sheaves of notes and was still poring over my appalling scrawl when one night she tapped me on the shoulder. It was humid and hot, a typical East Coast summer night; we had no A/C, the neighbors added their music to the stultifying heat. She waggled what we in our family call the "Jamaican finger" (don't ask) at me: "We goin on de street," she declared.
I sighed, frustrated. She'd been at my back all day: "Are you done yet?" I'd tried several times to explain the complexities and competition of academic life to someone who left school at fourteen to be a seamstress. Her family couldn't afford the education for her to be a surgeon; she figured sewing clothes was the next best thing to sewing bodies. I didn't want to stop; I was getting somewhere. Finally, however, I saw the hurt, hope, and mischief in her eyes: we were going out.
My grandmother is a lady of style. She has CLOTHES. She made them all herself in glamorous Jacqueline Kennedy style. She needed only to see it once, and she could make it and several variations on it. I found her in the closet looking for a visor and sneakers. She bundled on several layers of mismatched clothes. Rags that she would rather have used as dusters. "We goin' on de street," her voice said, as she tossed me some things neither of us would be seen dead in.
I barely recognized her. Gone was the strut that came with her heels and in its place an urban shuffle. Head down, sneakers up, she snuck down stairs and on to the sidewalk. Nonplussed, I copied her. "My gran," she nodded to anyone who made so bold as to speak to her. And we walked. Across the road. Into the wetness.
The first time, we hit a MacDonalds for fries. We were bad. Then, it was ice cream -- double bad. Her eyes glowed. Then, I tried chocolate tofutti (god knows why), but somehow that didn't sit well. "Need to take a cleanse," she said, holding her stomach. Over the course of the summer and, indeed, the summer after that, we ate every flavour of ice cream that the shop-rite could offer. She didn't like strawberry, but vanilla and chocolate were fine. Caramel was only OK, but mint chocolate chip was special. Her neighborhood didn't have much. I learned that Burger King had terrible fries, that KFC was worse; MacDonalds and Wendys passed muster. We walked from apartment to store and back. That was our routine.
My grandmother's condition is deteriorating rapidly. She's at that point. It could now be quick (interesting that quick is the Old English word for "life"), or it could be weeks. Months, it probably certainly is not. She's significantly disabled and on top of that has several intense medical conditions that prevent me from caring for her; she lives in a home in the community where she spent the last 25 or so years of her life. She used to have friends and connections who would visit her. I live across the country; I didn't want her to be alone in California, away from the voices of folks from her part of the world. I wanted her to be among the people whose lives she affected, who brought her work -- people with whom she worshipped and broke bread.
Her doctor said today that her life has no point. I was too stunned to respond; I politely thanked her for her help and hung up the phone. The doctor meant in the medical model, of course. A life has to have a function or a reason to have a point. Grandma has had no "function" or reason to live for years, apparently. And in addition to external stimuli and connections, she also meant that Grandma has no internal motivation to live (not sure how she could tell that).
It's true that Grandma's body has changed and that she doesn't live as she used to or even see the people she used to. Her friends have died or gone to their own residential care centers. Her facility is not easily accessible by public transit (sigh); most of her friends depended on the bus. Simultaneously, Grandma herself has become less able to travel. I would have liked to move her closer to me, but I didn't recognize the window of opportunity passing. I should have moved her while she was in the period where she was still able to interact with her friends. Medically (as opposed to disability), she is no longer able to handle either a commercial flight. Nor does she have the health or life skills to adapt to life in a new place. She is too disabled by her most aggressive impairments and too sick from other illness. Moving her across the country poses (so I have been told) a significant risk to her life. So, Grandma has stayed on the East Coast. A friend of the family visited/s often and was/is a local contact.
As we walked in the heat of summer, I learned about her wishes -- perhaps her fears were her fears or perhaps they were her illness speaking. Either way, the woman who once had wished to be a surgeon wanted no medical interventions: no knives, no tubes, no drugs. Her faith -- a hyper literal form of Christianity -- was an important strand in her decision-making. God would call her when He was ready. The body is a shell: burn it. Don't sit and watch me die. I want no fuss. No party. No mourning. She would be ready to move on.
Who knows what should be counted as a reason to live? Who knows what counts as medical care and intervention? Principles are one thing; circumstances are another. Would she, in extremis, change her mind? Would a feeding tube become desirable? Could we resuscitate her?
Do Not Resuscitate -- check.
Do Not Hospitalize -- check.
No Extraordinary Measures -- check.
"Believe and you will receive. Doubt and you go without." -- OK, Grandma -- check.
| Reactions: |
Saturday, September 19, 2009
Lost My Purse
Of course, I didn't exactly notice this -- I was going with the speed demon approach: terrorize some tourists and run with exhilaration. An hour later (all conversation, no food), I notice the unbearable lightness of my backrest. It's all over (I think). So, we all walk back together, navigating the city carefully; we wouldn't want to hurt anyone after all. Hours pass. I cancel my credit cards; work out a list of what was in my bag and wallet (cellphone, driver's license, green card, metrocard, BART card, healthcare information, money, gym card, Purell, lotion, gloves, and two complimentay tix to a furniture and design show in SF); and find out where I should file a police report.
I'm pretty stressed out, but am mostly reconciled to the fact that there's not an awful lot to do but wait and periodically call my phone to see if anyone picks up (actually, it turns out on the iphone that a password prevents that from happening). Then, a series of good things happens. I have google voice -- a service that, among other things, transcribes my voicemails and send them to me as either text messages or emails. I get an email from my doc in California saying some dude in NYC called him to say he had my purse but he couldn't reach me.
"We saw you speeding by us. Really impressed," he explains, "then a few blocks later, we saw your bag on the ground. When we looked inside, we could see your gloves and we recognized you from your license. We ran after you, but you'd gone." There then begins a slow chase through NYC. My phone shows that I rang them using a hotel phone. "No, the wheelchair lady (my friend) has already checked out," intones the front desk. The finders go to the nearby police station. "Leave it with us." The finders think the contents are too important to be left anywhere. So, they go through my stuff.
I've been wondering all day what my stuff reveals about me. No photographs, no reminders, no receipts, no coffee cards, no storecards, no personal stuff. My wallet and bag are all about style and function. At the same time as there is nothing personal -- I like to think of myself as a cipher -- everything you would need to formally steal my identity is available.
"Your life is in that bag." It is.... and it isn't.
| Reactions: |
Thursday, September 17, 2009
Autumn
The sense of dread rises in me as I smell the approach of autumn. Four years ago, I picked up a series of voicemails. In a scattered order, they announced the story of Wizard's accident. Four were from his friends; each was more hysterical than the last. One was actually from the partner of a friend; he was calling to tell me to calm down and that it wasn't as bad as the general panic would suggest. One was from the ER: "This is Dr. X; we have your husband." When I checked my watch, I knew I couldn't make it to the airport in time to catch the redeye to New York; I'd be staying overnight in a hotel, miles away from home, alone, and freaking the fuck out.
I tried to reach Wizard, but the HIPAA rules had recently come into effect. The nursing staff couldn't prove that I was related to him; there was no way to speak to him. I threw a blue fit. As it turned out, it wasn't the first time I was going to be unmentionably rude. When we finally managed to get a word in edgewise, I knew that life was going to be pretty permanently changed.
The next months are a blur.
When I read the police report, I got the name of the person who had run him (and some others) down. I would spend hours on the internet -- into the wee hours of the night -- googling. I got to know the intimate details of his life: his past was there for all the world to read. And I read. Obsessively. History doesn't change on a daily basis, but I would come back from the hospital, get food, and sit there, reading. Night after night. Image search gave me details of his face. I would look at it, searching for signs of evil. Looking for traces of coldheartedness.
I was beyond angry (and probably a little over the line); I actually feel like I might have been able to hurt him. I certainly wanted him to suffer -- particularly as he never apologized, sent a card, sent flowers, etc. You can imagine my horror when about two months into this new life, I saw him at a local cafe. Neither trauma nor guilt were present in his visage. He sat down, ordered a cappuccino and a salad; he read the paper. I stared and stared and stared at him; he had no idea I existed and certainly no inkling of my connection to him. In another life -- the "before the accident" life -- I would have acknowledged him as one of my kind. A lover of certain pursuits, a traveller down similar paths. As it was, I held murder in my heart. Up until then, I'd always seen that feeling as a cliche, but it was real. I could (happily?) have hurt this man.
I knew I couldn't speak to him. This is America. He hadn't contacted us because he probably figured he couldn't admit responsibility, lest we sue. I knew I couldn't speak to him lest I did something for which he could have sued me. It was a stalemate that he didn't even know he was participating in. I watched. And I watched. Then, I left. Given the intensity of this experience, you'd think that I would now be able to remember his name; I can't. I have no idea what he looks like; I remember where his family is originally from; I remember how many degrees he has. I simply cannot remember his name or his face. I have a photographic memory, but I cannot remember his name or face.
It's that time of year again. I wonder whether I pass him in the streets without knowing it. I wonder whether, if I were to recognise him, I would run over his toes. Mostly though, I wonder if he's out there still inflicting harm on others.
| Reactions: |
Wednesday, September 16, 2009
Lady Gaga And The Wheelchair
I'm writing about this as we speak. If you are interested in knowing about why it isn't appropriate for non-disabled performers to pretend to be disabled here is a post on Fox's Glee -- non disabled actor Kevin McHale plays a disabled character, Artie.
My most recent post about La Gaga and her chair is here.
thanks for stopping by!
WCD
Everyone has been asking me, "did you see the wheelchair dancer on the VMA? With Lady Gaga?" I didn't. I don't have a television (by choice). Since then, I have been chasing down images and video of this so-called wheelchair dancer: Youtube keeps removing them for reasons of copyright violation. Finally, however, I am in the picture: Lady Gaga shows up dancing with (among other things) a crutch and, about halfway into the song, a woman in a wheelchair is wheeled on by a large muscular African American man.
People let me be clear: There's a lot to say about the racial and gender politics of that performance. There's as much to say about the politics of disability. AND that wasn't an example of dancing in a wheelchair. That was NOT wheelchair dancing. That woman (I don't know whether she is disabled) did not perform as a dancer; she was a prop. If you didn't see it -- this picture is from the mtv site and the video clip is from Lady Gaga's own site (the wheelchair moment is just after the 2 minute marker); I can't post them for copyright reasons.
Anyway, check out the slumped position and revel in the 2 or 3 arm jerks; we don't get to see the woman's face - that might be a feature of camera angle and the clip, though. Is this woman disabled? I suspect not. I suppose that this was some hyper ableist imagination of spasticity and paralysis. But suppose for a moment that she is disabled. Imagine that this movement is what her body does as she dances. Why didn't they stop and explore it? Why not choreograph it so that we can see a disabled body move? And if you want some wild arm flinging movement, why not integrate her into the piece itself. There's some pretty wild arm flinging going on in the non-disabled sphere; she'd fit right in. But no. As usual, the (fake?) disabled person is merely a body wheeled on for display in a piece of gaudy pop art that passes for a wheelchair.
I'm not up for celebrating this piece of scenery as a "historic occasion:" the first time anything disability related shows up at the VMA. I would be impressed if Lady Gaga et al had hired actual dancers who use wheelchairs to be part of the performance. If you don't like any of the arty modern dance/ballet companies and hate ballroom dancing, hire the Colours 'N Motion hip hop dancers. There are disabled dancers who use wheelchairs. But whatever you do and whoever you hire, respect the art, reward the artistry, and support the artists whose work it is to extend their bodies in the power and grace of dance.
| Reactions: |
Sunday, September 13, 2009
Street Encounters #2
But the insult stings. It shouldn't, but it does. I look back at her and decide to move on, but part of me wants to have it out with her. I turn back. I glare at her -- and she gets the message; I am pissed.
This doesn't show me in a very good light, but, sigh, here goes. I double back; I'm a little scared of her. Does she have a weapon? Something she can use to hurt me? Then, I see, as I get closer, that now she's a little scared of me. Somehow, though, that doesn't stop me. I wheel up close to her cart (but not her person) and look her straight in the eye. "That was wholly unwarranted," I say in my poshest English accent, "and singularly discourteous." We stare at each other. "You should know better," I say, reaching for my mother's voice. I stare at her, noting again her pearly pink lipstick, the beige-ish blusher, and overall brown tones to her clothing. What is up with this woman? I can't decide whether I want to be menacing or stay on something close to the moral high road. She stares back. No one says another word. I turn and proceed down the street.
Over lunch, Wizard and I discuss her attitude. "Oh, she probably thought you were part of some death panel coming to take her Medicare," he jokes sourly. I try to diagnose her. She wasn't homeless in any obvious sense; was this a psychiatric disability (disability being no respecter of persons and social class)?; Tourette's? Simple meanness? Racism? An overdose of reading the Old Woman/Purple Poem? In the distance, we see the shape of her shopping cart; we watch as she limps in a direction away from us.
I should probably have let it pass; I should certainly have stopped when I realized she was scared of me. I am only a little bit sorry.
| Reactions: |
Thursday, September 10, 2009
Started Posts
My blogger dashboard has drafts of posts that I haven't yet completed. I have either not wanted to complete them or have not been able to finish them. At any rate, I am probably not going to finish them now. They have languished in the drafts section; I look at them every so often and I feel bad, but apparently not enough to get back to them.
Although I have been blogging since 2006, the remaining started and unfinished posts all date from 2008-2009. I have no idea why that is -- perhaps an increase in pain? That was the year in which things went really wild disability and hip wise. Anyway. I want a clean slate. And they are relatively interesting fragments. So, here you are.
Started 7/23/09 Just Another Body
The New York Times reports the decimation (well, not literally) of New York City Ballet's corps de ballet: "11 members of the company’s corps de ballet, some barely in their 20s, who have joined the swelling ranks of laid-off workers nationwide struggling to find new ways in the recession. They were told in February, shortly before the deadline for new contracts to be issued, that their employment would not be renewed, mainly for economic reasons."
What happens to dancers who have been laid off?
Started 3/12/09 A Few Of My Favourite Things
As a child, I wanted things because although I knew how much they cost, I also knew what they were worth: value as a human being.
Continued on 2/7/09 LIRR: A Disability Nightmare
[I think this is a continuation because the original NYT article is from 2008, but blogger has it marked as an 09 post.]
New York Times I grew up speaking of "railways" more than "railroads." Indeed, unless I am thinking specifically of "railroading" someone into something, I mark "railroad" as an American word, a sound, concept, and idea of the country I now live in.
Started 10/28/08 Punished With Art
(NOTE: this is designed to follow this post)
Art as punishment strikes me as just absurd.
I am so tired of the idea that people use art as a kind of wellness tool. Pregnant? Don't forget your vitamins or your baby Mozart CD. Not that you shouldn't play Mozart to your child; it's the idea that you can use art mechanically, as a tool -- a man-made device. Now, we have moved beyond the idea that colour and muzak can somehow be important in influencing civic behaviour into the realm where acknowledged works of art can be useful in maintaining public order. I acknowledge that art can have emotional effects, effects that raise and quell emotion. Art can stupify or enliven. I know that public art often seeks to play with such emotion, but the idea that we control our interactions with art or that one viewer of art can control how another sees the art defies me.
The idea of art as punishment also seems weird. No, let me put that more accurately. This is a softer, say a civilian version of music as torture (interesting papers thereon here, here, and here). To punish with art is an abomination. To torture in any manner is execrable.
At West Coast, we do a lot of school assemblies. It's a weird experience -- drive for an hour or so. Dance for 45 minutes, perhaps wait 30, perhaps dance another 45, and then leave for another hour or so. We get around the whole Bay Area: East Bay, South Bay, Peninsula, and City, and this has given me a lot of exposure to different schools and different school systems. We go to all types of schools. Wealthy schools ask the parents to pay for us -- diversity week -- poorer schools often bring us in under some kind of program. I'm not exactly sure how we get there. But I do know what I see once we arrive.
Society has generally agreed that "Art," or should that be "ART," is a good thing, so, as I toil away, on a canteen floor in a freezing dining hall, I often wonder about what the kids staring at us see. And, sadly, I have the suspicion that what they see correlates all too strongly with the geographical location of the school. And location correlates with money, race, and class. Sigh.
School #1 is located in an area with a median house price of over 3,000 000, and a mean household income is over $200,000. One middle school we visited had TWO, yes 2, count 'em two fully equipped proscenium theaters and a small tech crew on hand to support us. The environment was fake Gothic/Victorian Oxbridge college, and the students were surrounded by other prominent indicators of wealth.
The students at this middle school were obviously accustomed to seeing artistic performance, and we were there as "performer/entertainers." It was our job to win over the students. (Interestingly, I felt the teachers were in a similar position: tutors for the children over powerful people, but not necessarily their "social equals.") We were treated very well ... but we were essentially hired artistic "help." One of the students felt free to comment about the scratches on my chair and my smudged lipstick. When we were done, teachers escorted the students out -- and we left with no further ado. I don't actually know this, but my guess is that there wasn't any follow-up classroom work done to support our performance, either.
OK. So, not everyone has to swoon over us (though that is a preferred response). In this post, though, I am worried about what they saw. At an almost equally wealthy school in another town, we asked the students to define the word "quartet." Answer: 2 violins, a viola, and a cello. Well. I am not going to argue with that. But I do think that this answer connotes a particular relationship to the performing arts and perhaps the arts in general. Someone who in middle school gives that kind of answer will most likely have access to and continue to develop a relationship with the classical aesthetic and critical positions of the canonical Western curriculum.
This in itself would also not be a problem if it weren't for the fact that these students are more likely to inhabit worlds where they are exposed to (and adopt) certain thinking practices and educational values. Our culture values these practices; it values that education. And we reward those who have these credentials and who can do this work well. Very well.
School #2 is located in a district with a median condo value of $450,000 and salary of approximately 53,000. The difference is not just about the facilities. Yes, poorer schools don't have tech crew; we work on dirty canteen floors, in places with no heat, windows that won't close, buildings that look battered. The atmosphere is very different. Some of the teachers chivvy the students more; the students don't seem to notice. Others seem committed to being there for their students; these students respond to them with happiness. We are treated as a valuable resource; we are supported by classroom work and follow up in some cases. In others, we are a treat. There may be no heat, but a teacher volunteers to get us hot water.
As sad as all this is in comparison, I am still worried about what the students see. Overall, fewer of the students are able to give correct factual answers to the questions we ask. That's no big deal. Factual education can grow over time, and your life probably isn't ruined if, in middle school, you don't know what "choreography" and "improvisation" are, but not having had the exposure to the ideas behind the concepts. That bites.
It bites because these kids may never catch up.
Started 10/27/08 Another Me Meme?
Six random things:
- I have perfect pitch -- I can tell you the pitch your car runs at; want to know what note your hoover is? I can do that, too. I used to have photographic memory -- pages and pages, location on the page, font used, numbers, numbers -- but it started to fade in my mid twenties and is now pretty unreliable.
Started 8/31/08 Cripple Poetics
Disclaimers:
I know Petra and Neil personally. I have been given a free copy of the book for this review.
Who would want to read these edited conversations between two people who love each other? Why would anyone publish this book? Seriously, what are possible interests and motivations in reading, writing, and publishing a book that charts the courting of two disabled people?
One approach to answering these questions involves considering the value of a book. A book. With pictures -- or, more accurately, photographs -- but very clearly a book. And, moreover, one that crosses boundaries. Kuppers is an associate professor in the English department at UMichigan (Ann Arbor); she will, most likely, count the book in her academic resume, and her colleagues will review it when she seeks promotion. In this context, the book might be seen as a BOOK: a contribution to the canon of knowledge and a work of art (Kuppers and Marcus include their poetry). The materiality of this book registers differently in the context of Marcus's significant body of artistic and activist production. The value that you/we/I assign a book shapes what we might expect of it and of ourselves.
And what of love? Why would I want to read the IMs and personal poetry of two lovers?
Started 7/21/07 Ganked (Almost) Wholly From Torontoist
Pity sex may have gotten some of us through university, but Loree Erickson, a York University PhD candidate and photographer/filmmaker, is determined that it’s not a phrase which should be associated with the disabled.Accessible sex party? Wow. I cannot imagine the access arrangements. Big SMILE.Concerned about the sexual stigmatization of people with disabilities, she’s put together an evening of film and live performance intended to open minds and shatter stereotypes about sex and disability.
Reclaiming the Gaze will feature two short films by Erickson, as well as performances by AJ Withers, Julie Devaney (My Leaky Body), and Peggy Munson (Origami Striptease).
The event is also a fundraiser for Acsexxable, being touted as Toronto’s first fully accessible sex party. Torontoist rarely gets invited to sex parties of any kind, so we’re rather intrigued by the concept.
Tuesday, September 8, 2009
What IF?
To a certain extent, I suppose, the TAB to disabled thing means that, should people live long enough, they will all "end up" bound to their chairs; it is a destiny of sorts. One to which we voluntarily head? Well, that I dunno. But what if this were the general understanding of how these things work?
I can begin to imagine a world in which wheelchair use is not a problem; it is an accessible world, a place in which disability is simply diversity. I cannot imagine a world in which wheelchair bound is said with the pride and sense of accomplishment as college bound. A place in which the frailty of the body is as accepted/desired/normalized as the destination of a flight. Of course, we all end up in wheelchairs. That's just what happens.
| Reactions: |
Saturday, September 5, 2009
Bay Area Events!!!
Kaleidoscope, The Third Annual National People of Color Cabaret ****************

4th annual –
Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility
Friday, October 2nd 2009 @ 8 pm
Saturday, October 3rd 2009 @ 8 pm (ASL Interpreted by Stage Hands)
Sunday, October 4th 2009 @ 7 pm
Brava Theater
San Francisco
2789 24th Street at York
Sins Invalid is a performance event celebrating the power of embodiment and the tenderness of struggle, stripping taboos off of sexuality and disability and offering a vision of beauty that includes all bodies and all communities. Join Sins Invalid as a night of resistance to invisibility!
Artists include:
Aurora Levins Morales
Cara Page
Antoine Hunter
Mat Fraser
John Benson
Maria Palacios
Ralph Dickinson
Leah Lakshmi Piepzna-Samarasinha
Nomy Lamm
Todd Herman
Leroy F. Moore Jr.
Seeley Quest
Patty Berne
Supported by the Aepoch Fund, the San Francisco Arts Commission and the Zellerbach Family Foundation
Wheelchair accessible. Although we cannot guarantee a scent free environment, we ask that people please refrain from using scented products.
Please Note: Show contains explicit content
Tickets are available at www.brownpapertickets.com
For more info please call 510-689-7198 www.sinsinvalid.org
| Reactions: |
Thursday, September 3, 2009
Taking Flight.
Our van shows up pretty easily. That's cool. Then, the hotel staff director of sales comes out to greet us. This trip feels special: it's been a long time since all the logistics have worked like clock work. It's been ages since we were last welcomed as performers.
Not sure what comes next. More logistics for certain: lunch would be my priority. Checking out the stage. That would be nice. And buying stuff I forgot.
| Reactions: |