Experience and Representation

News of this "experience" stunned me. The picture to the left is from William Easterly's invitation to a refugee experience at Davos.

This is his scanned invitation; you can read his analysis at the link above.

The text reads: "refugee run. Invitation to an event you will never forget. Experience life as a refugee in Davos. During this year's Annual Meeting of the World Economic Forum, we would like to invite you to an experience unlike any other on the agenda: an opportunity to step into the world of conflict and experience life as a refugee.

Just five minutes' walk from the Congress Centre, you can enter a simulated environment that will thrust you into a war zone. You will meet a rebel attack, navigate a minefield, and battle life in a refugee camp. (Spoiler alert: No harm will come to you!)

A debrief will follow in which you will discuss your experience. The issue of people on the move, whether through conflict or environmental causes, is a major challenge not only for our world today, but as well tomorrow. It is of particular interest to those embracing Corporate Social Responsibility, public/private partnerships and sustainable solutions to global challenges.

This "refugee run" is an experience regularly run among CEO's and other business leaders. It has proven very popular because it takes people well beyond the reach of a speech or "break out" session into actual "experience" of the issue. It will be an experience you will find impossible to forget.

****
Oh. Indeed? OK. Granted, some of the oddities and insulting nature of this text has to do with the non-native use of English. Regardless of language, however, you have to wonder how the usually spot on people at UNHCR got this idea. What an incredibly insulting, feckless, irresponsible, rude, offensive idea. Unbelievable!

There is absolutely nothing that the rich CEO's at Davos could learn from a simulation that would enable them to, even for a moment, understand the reality of life as a refugee. They might learn what it feels like to piss in the ground because your toilet is unavailable, but that doesn't teach them what it feels like not to have a toilet because you are miles from a home that no longer exists, in a village destroyed, away from your friends and family -- some of whom are probably dead, but you don't know that -- with no discernible means of altering your circumstances: you ran out of food and water days ago and the shooting in the distance suggests to you that no food delivery will be happening for a while. Nothing about navigating a simulated minefield in the safe space of Davos teaches you for seeing your child blown up as he/she runs towards you or for having to cross that minefield in order to escape the certain death of an approaching militia... Unbelievable.

The logic error that enables this misguided tourist theme park also lies behind the disability simulation. Quite simply put, I am not against someone experiencing how it is to move around without having one's customary access to one's vision. I think that it is a worthwhile experience. I think it is equally worthwhile seeing what you can see and feel if you use a wheelchair. But none of those fleeting experiences teach you what it means or feels like to lived disabled. This is a simple question of the distinction between experience and representation.

While Neil Marcus has often spoken of disability as a different country, there is no excuse for the Davos folk to be offering tours in refugee land. Tourism, a privilege that all too frequently disrupts our understanding of the line between seeing and exploiting, only reinforces the distance between the local and the tourist. You know what I mean? You go to the beach, you wonder, wistfully, what it would be like to live here full time, and in that moment, the moment of your most intense desire for similarity, the distance between you and the local is maximized. You don't live there; you only want to and you recognize all the reasons that you (usually) can't.

But in this case, no one wants to. No one wants to live like a refugee by choice. This invitation treats elements of a refugee's life as a Disney experience: a wonder world to which you can never return and will never forget. Bank that one, billionaire attendee.

You Know The Economy's Bad When...

Your plastic surgeon sends you a birthday card/discount coupon on Botox, Radiesse, a "relaxing microderm abrasion," Juvederm, Perlane, or a consultation with her honourable, surgified doctor self. I did the plastic surgery thing several years ago because I had a lipoma removed by liposuction; the thing was massive and couldn't be removed by what my would be surgeon called the "slice and squeeze" method without major back surgery -- it was all knotted up between the lat and something I've forgotten. So, he sent me to a plastic surgeon.

I did feel weird that day. Admittedly, I had a lump to be removed, but I felt lumpy and ungainly in the face of all that perfection. As I sat in the exam room, I discovered that I could choose the shape and feel of my breast implants (I didn't know), that several women had volunteered before and after pictures of their surgeries, and that there were several different ways to do a tummy tuck. I had the surgery; I watched the little jar fill up with disgusting looking fluid and came around to some incredible pain. One "little" surgery and big lots of pain. I can't imagine doing that voluntarily on your lunch break. It took ages -- weeks -- for the bruising to go away. Actually, that's the only time I have been prescribed Arnica by a regular MD. To the doc's credit though, if there is a scar, it isn't visible to my (or Wizard's) naked eye.

Anyway, the birthday card is a pink piece of paper with pink orchids decorating the corners. The text above the fold reads, "Wishing you a day as special as you are ....."

1. 5 ellipses are too many given the precise continuation of the text inside the card.
2. It's not my birthday. (Not exactly confidence inspiring record keeping.)
3. I scarcely imagine an abrasive procedure to be "relaxing."
   
4. I don't know what Juvederm, Perlane, or Radiesse are, and I don't plan to find out.
5. While I admire the use of the word "special" -- so nice to be ordinary special and not, well, "special" special -- I can be special without looking perfect.

That Botox, however? mmm. I wonder what would happen if I rolled in and asked her to shoot some botox into the various parts of me that spazz -- technically, I am not a candidate for Botox treatment -- I just want to see her face when I ask. I want to remind her that Botox is an expensive procedure, that disabled people need this kind of work, and that it is a travesty to waste a Botox shot for a frozen faux face.

And, after all that, I want to shred the piece of cheap printer paper and proclaim that $50 is nothing off her over $500 per hour fee.

Nonsense. Absolute Nonsense.

Same But Different

At the pool today, I noticed two women with their respective PT/trainers. The first was younger and pregnant; the second older. They were both doing the same exercise. They passed each other time and time again. I wondered if they were actually seeing what I was seeing; were they noticing each other?

I watched them fascinated as each checked in with her body, listening intently for its messages. The first woman was ecstatic; she was smiling and laughing. Her voice was bubbly; her eyes wide and face happy. My reading? She was filled with wonder and joy at her body -- its mysteries, its responses, potential, and possibilities. The second woman was just as focused, but I read her differently. Her face was filled with fear and vulnerability. Her voice quavered as she spoke; her body was not as she once knew it; I saw her alternate between sadness and hope: she was fighting for every last bit.

On a daily basis, I flip flop between these two things myself. All that I am and all that I have outside that pool and the other PT offices seems not to matter. The way I live, the material facts of my life -- my educational background, jobs I have held, places I have lived, accolades, triumphs, travesties, wrongdoings? They don't change the simple basics over which I have not an awful lot of influence: I am in a pool of water. I can make some muscles work. I have not yet been able to make others work. The water is a great leveller: we are all there to either forget or work on our bodies' fragilities.

True, I can work hard -- and, believe me, I do. I do think it is correct that work, dedication and focus will eventually bring back more than not. But on a daily, nay hourly, basis, I don't see the rewards, and the emotional cycles run faster than the physical progress. So, for my time in the pool, at the office, on the table at home, I can and do choose to apply myself; I hope that my work will pay off. I strive not to let the feeling sink me faster than my belt can keep me afloat.

I don't want to overstate the equality produced by the water, though. As I listen to the conversations that happen, I note differences and tensions that are products of race and class; I overhear a conversation in which the white disabled speaker depicts to the societally racially marked listener a team of racial/ethnic minority carers first as helpless foreigners needing the speaker's tutelage in the English language and in American ways and then as a professional staff with whom the speaker maintains only the most distant connection. Both could be true, I suppose; my point is only about the context: the listener nods with that practiced POC expression of neutrality I know from my own face.

I note, weirdly given the place, tensions that are a function of physical impairment. It is always hard to gauge another's pain or level of function, but my sense of proportion is tweaked as I listen to two people whose levels of impairment are vastly different. For every comment or story, the less impaired speaker has to present herself as worse off than the more significantly impaired speaker (if you see what I mean). I soon realize that we are not talking about level of function at all, but about ease and comfort with whatever kind of function.

There are tensions between those with age-related impairments and those with other kinds of disabilities. We may all be at the pool, but only some of us are disabled -- despite the fact that almost everyone has a placard (except those who take the bus or paratrans or roll in). I hear it in conversations, and I see it in awareness of each other. It's the little things -- awareness of where people leave their assistive devices, who uses the one (jeez!! ONE) accessible toilet in the changing room. Who uses the wide stall to change in. The mother-baby community always adds a mess here -- strollers! strollers! need I say more? It's the small things; a hand on a straying shower/pool chair, a tip about which chair to use, a button pressed in passing.

I will get up tomorrow, go to the pool, and start again.

Hotels.Com Suit Settled

From the DRA website,

OAKLAND, Calif. – Under a settlement announced today, Hotels.com and Expedia.com, two of the world’s leading online travel companies, have agreed to add features to their online travel reservation systems so that millions of travelers with disabilities can use their online services to search for and reserve hotel rooms that have the accommodations they need.

....

“This settlement ushers in a new era in the online travel industry. A wheelchair user who reserves a hotel room online will no longer have to worry that she or he literally might not be able to enter the room after they arrive,” said Kevin Knestrick, an attorney with DRA, a non-profit law center based in Berkeley, Calif., that specializes in high-impact lawsuits on behalf of people with disabilities.

No damages were sought in the case, which was filed in the California Superior Court for Alameda County.

Interesting Insurance Issues

So, I just received word from my insurance company that they are delaying the claim for my surgery; a further phone call revealed that they have processed and allowed the arthroscopic labrum and nerve stuff, but that they are denying the capsulorrhaphy. I asked why, of course.

It turns out that they consider a hip capsulorrhaphy (but not a shoulder capsulorrhaphy) an experimental procedure; it is therefore not allowed. I read what literature I could and talk to several surgeons before consenting. It is a new procedure -- only years old -- but not an experimental one. I suppose you could argue that 5 years or so doesn't give good longterm data, but the number of conferences, surgeons, and journal articles I read about don't exactly make me think it is new. What's up health insurance?

Second, it turns out that I have zero liability. I asked what that meant. The person on the other end said that I had a zero liability contract, that the doctor was a contracted provider, that he shouldn't be performing for non contracted procedures, and that if he billed me I was to contact them, they would send a provider relations representative down there, and that they would remove him from the roster if he did it again.

I don't think this is accurate.

I am sure I signed something saying I would pay for whatever my health insurance paid for, so I doubt this is enforceable. I think the person on the phone missed the distinction between performing surgery and billing for it. But suppose it is -- suppose she's right. My doc said he had done several hundred of these; he's not eating the cost on that many surgeries; his patients obviously pay. It might be that their contracts with their health insurance companies are different, but mine is a pretty big one over here: Some percentage of them must have my carrier. OK. So, then, the question is, did the other people know they had zero liability or did they just pay? And if they did know, why did they pay? Presumably, they could have pressed their claim for zero liability or did the form saying they would pay whatever the insurance didn't pay trump other concerns ...

I really hope for the latter. Because I would hate for someone to choose to press a claim and have the company shut the surgeon down. This was a great way to stabilize my hip with arthroscopic surgery. Without the availability of it, I would have had to wait in pain for years until my hip was bad enough to warrant the major open hip surgery and the hardware that would accompany any stabilization procedure. I would be a wreck, still, at this point. I feel like a bunch of people paid -- either because they were obligated to or because they felt an obligation to -- and I got my surgery. Now, it's my turn -- pay up!

Pay up, indeed. Stable, shrunken, scraped hips don't come cheap.

Jigsaw Done; Wizard Alive

Post includes 2 p ictures of my dining room table with the puzzle on it. I didn't get around to moving the extras, so one shows 2 vases of flowers (comfort for the death of a beloved pet) and my purse. The other shows my toothbrush and toothpaste (eee ... and on the dining room table, too).

Yes, that is California winter sunshine in a globally warmed world. Ahhhhh.

Oh yes! The picture is of a castle in Germany: lots of green, green, green. And blue, blue, blue. And blue green, green blue, ....

Sigh. Smile.

In Augurating Joy! And A Little Shoe Throwing

It's done! It's real. He's still alive! Now, let's see change.

Some thoughts on inaugurating.

I throw my shoe because it is a beautiful thing in joy, triumph, and celebration! I throw my shoe because it is a beautiful thing in sadness and grief for all who suffer and have died because of our actions (US and UK) in the past 8 years. I throw my shoe because it is a beautiful thing and what better than to toss beauty into the air than bombs, hatred, and horror. I throw my shoe because it is a beautiful thing and because removing my shoes as I enter another's space is a symbol of my respect. I throw my shoe in the hopes that the original shoe-thrower's application for asylum will be successful.

This is my most beautiful shoe: it's blue velvet (I had to take a picture of it in the white bathtub to try and get a blue sheen to the picture). And, yes, that is a see through heel. I stumbled upon it in a store filled with other beauties of all different kinds. It seemed lonely, forgotten, and underappreciated, stashed back in a corner under a rack of coats. I felt the same way. This is a beautiful shoe; it gives me a sense of confidence, strength, and power (perhaps misguided to draw so much from a material thing?). These are the feelings that impel me to throw it in the air -- and wherever it lands I hope that the person who picks it up can feel the spirit that compelled it.

(Post includes a picture of a blue velvet boot with eyelet laces at the back. It has a sheen on the bottom and a see-through plastic heel.)



How ironic that Cheney attends in a wheelchair, and how miserable his access. Will that bring change? Or will it only be an issue because Cheney is an individual who will in a couple of days get up and walk away? It's an individual temporary mishap. Don't need to rework the whole damn system.

Check those wacky SFers. Bush Street becomes Obama street. Nothing like a little civic protest. After all, who needs signs. Or at least, the only sign is an Obama sign, right now.

And that brings me to the conceptual thread of this post: signs, symbols, and inaugurations. An inauguration is a rite that installs the new president; it transforms him from president-elect to president. It is a ceremony of authority and power. But I don't want to concentrate on the completion of that transformation, because so much about the linguistic origins of that word is less about the successful installation of a new president than the omens, the auspices, the signs, symbols, and tokens that go with/are necessary for the ceremony and for the hope-filled world.

An inauguration, per the OED, is "The action of inaugurating; formal induction, institution, or ushering in, with auspicious ceremonies." There it is. That auspiciousness thing. The pomp and circumstance may be an end in themselves (after all, I'm a Brit; I appreciate a good romp through stuffy luxury and cheesy tributes as much as anyone else), but they are also supposed to signify forward. The more auspicious, the more better, as it were. In other words, the inauguration is only a portal and harbinger, we hope, for/of change.

Changing the street signs is a symbol of transition; throwing our shoes marks our transition over the threshold and entry into, well, whatever comes next.

Like everyone else, I will be watching, waiting, and, yes, doing my bit to see that all augurs well.

Martin, Oscar, Barack: Inaugural Pain

At the moment, the disability community is justly disappointed in the access arrangements for Mr. Obama's inauguration. Reports of conversations with various officials appear to amount to a level of forethought possibly best summarized as "stay home and watch it on tv." It is true that the larger world won't actually care about access. As NPR and other news stations report the buses of civil rights activists, the inaugural trains, concerts, planes, ...., I have yet to see an official, as opposed to a blog, story about access for disabled people. The level of interest just isn't there -- is access "too hard?"

I'm finding that this story about the inauguration isn't holding my attention. It's not that it isn't a shame and completely unnecessary, it's that somehow my brain is stuck on a particular series of conjunctions: Martin Luther King (Day), the shooting of Oscar Grant, and the inauguration of Barack Obama. These events have swum together in my mind in such a way that I can't read/watch coverage of the "new era." Because the era isn't new.

I've said that before. And all over the blogosphere, people have made bitter remarks about the "post-racial" ness of this shooting. The excitement is great, a wonderful thing -- and yet I can't get caught up in it. Because today somehow, Oscar Grant's death is more prominent in my mind. Some things are too awful to contemplate or watch -- though you can watch it on YouTube if you want. (Bear in mind it is a video of a white BART (transit) police officer shooting in the back an unarmed black handcuffed man as he lies face down on the platform).

The event occurred on New Year's Eve; I've been at a loss as to how to write about it -- even though it's been on my mind almost every day. Intervening events now include the Oakland riots (two different occasions), discussions of black on black crime, the delay in arresting the shooter, his not guilty plea, the distinctions between BART transit police and Oakland city police, the kind of justice necessary for the rioters, violations of civil rights, and ...

It's certainly not the first time police either in Oakland or in NYC or, indeed, anywhere else in the US have shot an unarmed black man. Another black man has probably died in similar circumstances in the days between New Year and now. But for reasons that I have yet to figure out, I feel strangely vulnerable about this one. It's not that I seriously believe myself to be at risk when on BART; no officer is going to shoot me. Nor is it that I know anything about Mr. Grant, his family, friends, or circumstances; he's not a personal friend. It is simply that tsunami of joy that seeks to reclaim the US triumphal narrative in the stories of MLK and Barack Obama washes right over the miserable death of Oscar Grant.

The stories of Mr. Obama and Dr. King offer a glimpse of redemption, they allow the majority to assure itself of its belief and membership in a just and fair society. MLK died a hero's death; his work changed the world. We can believe in good, in change, and in each other. Mr. Obama is seen as both benefiting from the work of and fulfilling the dreams of the Rev. Dr. King. The rites and ceremonies of acceptance and inclusion (and, yes, it's a bitter pill for disabled people to be excluded at this moment) are something positive to laud to the whole wide world. America redeems itself; there is hope, optimism, joy, and there is the sordid death of Mr. Grant.

The men and women who knocked on doors, registered voters, worked the poll booths, assisted voters in getting to the polls, wrote letters, made phone calls, cried, hoped, laughed, and sweated to make this happen deserve to celebrate with Mr. Obama and his family. Those of us who watched and watched with our hearts in our mouths and out hopes high will enjoy the celebration.

But when the party is over, who will be there for Mr. Grant? Who will be there for the business owners whose property was destroyed when a peaceful protest turned violent? More important? Who will stop this from happening again? In my title, I've sandwiched Mr. Grant between two icons of change. I hope that there will be a welling of public opinion, a wave of outrage that will turn back the tide of indifference. When will someone with power say that this isn't a single bad apple; it's the system, and I/we will work to correct it. I wait for a wave of justice such that Mr. Grant's story, too, will become one of redemption, the one that finally stopped and appropriately punished police/official violence against unarmed men.

I wait for Oscar's Law -- something, something that redeems this sad death on a grim BART platform.

Life in the Hot Pool

Gaina asks whether I am getting hydrotherapy. I most certainly am; these pool sessions are quite literally changing my body and my sense of the local disability community. More often than not, I could swear I am the only wheelchair user within 50 miles. I see loads of placards, but no wheels. Where is everyone? Now, I know: they are at the pool.

I board the bus, only to hear at the handoff of drivers an exchange in which the drivers play the equivalent of transit dozens. "I've gotta work until 11." "I've picked up 5 chairs today," with thumb jerked backwards towards me. I look back, too, expecting to see a stack of sofas or something. Anyway, this one wins it -- quite clearly the suckiest thing ever; the other driver glares at me and revs the engine. When I disembark, a powerchair user zooms by yelling, "Can I get past here??" He scares me; I jump and fumble my gloves. He whips through the light and minutes later, I see him charge across the road in a different direction. The man clearly has a death wish. I giggle, gather my gloves, painstakingly haul my ass onto the lift of the next bus, and slowly plug in my ipod.

Two stops down, another chair user boards. I recognize her from the hot pool; we're both headed to pool therapy. Now, there's a problem. The bus driver sighs audibly: a second chair on one bus! Incredible! A careful dance begins. My chair using acquaintaince has her scooter today; she needs more room to turn. Because I am already tied in, there's not much room for me to help or for her to get to her spot. The driver huffs and puffs: "You should have come in backwards." After watching her do a 100 point turn, he repeats himself; someone on the bus agrees. Now, there's a battle of us and them. I watch as she maneuvres herself; she's almost there. I can feel the driver getting more and more impatient; this is soon going to become part of a driver's worst day: two on one bus!

We lurch off; both of us fold forward -- the driver is catching up on lost time.

We smile as we are lowered backwards down the ramp into the 93 degree water. My friend is going to float for a while; I am a little early, but I will be going to work on getting that hip to do something more interesting with itself. The hot water envelops us; this is a moment for community. We all run as fast as possible past the mother and baby class (that's a whole different community). And we hang -- in all senses.

It's a group of people with a range of different disabilities -- hip and knee surgeries, arthritis, CP, stroke, SCI, the works. Mostly, everyone is much older than I am -- a couple of exceptions, though -- we are linked by our daily experiences with, say, bus drivers, assistive technology, service providers, doctors, and the joys of the hot water. It's taken a while, but I have now been often enough that people have begun to smile when they see me; a couple have asked my name. Slowly, I am becoming part of the pool therapy community.

I've done water exercise before. About 3-5 years ago, I was a regular at two different water aerobics classes. I also did some water exercises for my shoulder. I loved deep water work and was surprised by how much of a workout it gave me. This is different, though. My needs are different and while in the other classes I was aware of my body, I went into the water to power through and "be an athlete" about it. I took pleasure in arriving with a cane or on crutches and then in kicking ass in the water. I took pleasure in showing how fit I was despite everything. Now, however, I feel that the water supports me through my vulnerability. It helps me get stronger and figure out what I can do. It's a big change in perspective.

This pool is a great opportunity: a couple of bus rides from my home, a completely accessible facility with gym, cafe, and a centre for adults and children with developmental/cognitive disabilities. The staff know exactly what you need and are willing to help with the smallest -- I'm sorry, I can't reach my .... The water PT has coordinated with the land PT; no one is working at cross purposes. I have a programme, a plan, and it seems to be working.

This week I made progress. Noticeable progress. I can now move about the house and do such basic things as shower without either help or pain. I am stronger. So much stronger. For the first time, I can see a pathway back. I can't imagine what my body will look/feel like; I don't think it will be the same as it was before the surgery, but I also can't imagine how the differences will feel. I can't anticipate from here out precisely what my level of function will be, but, weirdly, I can see that I am going to get better. I feel stronger and am curious about what my body will be like and how it will work. Will I be ripped? (better be -- evil grin).

In the shower/locker room, I overhear a conversation about the challenges of riding the bus; I smile, push the curtain aside, press the button, and run: I know the bus driver won't wait.

Wheelchair Park

A friend sent a notice about the Craig wheelchair park. Craig sounds like a really cool place, btw. If you have to do rehab in CA, Craig in Co seems to be one of the places to go -- in fact, a couple of people I know have attended Craig; they are in great shape.

The park has been set up to help wheelies learn to navigate the obstacles of every day life: cobblestones, curbs, public transport, stairs, doorways, etc.

Great Idea! Being able to push our drive your chair is only a small percentage of the challenge of getting around. And while those who go through traumatic SCI are probably the most immediate candidates for instruction, it would be great if they opened it up to people who come to use chairs in their every day life as well. I can't count the number of times I've needed instruction in some basic or other. Some tips you can get off the web; there are instruction manuals in how to ..., but some you just need another person to teach you.

I remember the day when OT showed me how to go off a curb forwards. I had the backwards method down, but there's obviously an advantage to being able to see the traffic situation and to not having to turn around. Wizard watched with some trepidation as both of us shot off the curb into the road. The OT bounced neatly on his rear wheels, lowered his front end, and turned around; I screamed and smacked onto the tarmac. No amount of tire pressure could cover that one. Round One. Round Two: OT repeats the maneuver, explaining that he can go down whole flights of stairs like this; he holds the wheelie position and slowly comes down. I repeat the tarmac smack.

I learned how to do escalators backwards in Seattle; I had had a couple of very scary attempts in NYC at going forwards down the escalator at 34th. NOT a good idea. Much screaming. Much screaming. In Seattle, at a dance workshop, I learned from wheelies with better skills how to go down steep slopes in a wheelie position and that I should attempt escalators -- even the ones going down -- with my back first. I can go up, but I am still scared to go down. You have to hang on and, well, that scares the crap out of me.

I don't think I would trust myself to do any but the widest stairs in wheelie position; the control thing is not quite there yet. But I can bump down any kind of staircase (assuming my hip and butt don't hurt). It's quite a scene in the NYC when I bump down into the subway. Smile -- a small bit of showing off, there -- but I have yet to figure out how to go up the stairs. A dance colleague with incredible strength has showed me how, but, well, I don't have it yet.

Things like this you learn from other wheelies; I don't know if Craig is teaching that kind of stuff. But if it is ... yeah. People need to know. Because the world isn't always accessible, even when it claims it is. The more skills we have, the greater the chance of our independence.

The article concludes: "John Vcelka, who was injured three and a half years ago in a skiing accident, uses the terrain park to build up his wheelchair maneuvering skills. "It's kind of a protected environment, and then if there is a problem, the hospital is here," Vcelka told Ivanhoe."

Umm. Probably *not* the original idea.

Not Sweating It, Not At All

My mother would tell me that I need to get my head on straight; I can hear her voice in my head. But I still can't turn it around.

Her parenting style teaches me that I need to work hard now, that I should get up and pull my self together. But somehow as hard as I pull, the pieces won't gel.

Her life philosophy instructs me in the ways of struggle because only those who struggle survive; those who drown are weak. I desire only to pull the cover over my head and sleep for a while longer.

What are we talking about here? PT/rehab. On which I should be spending at least 3 hours a day. (A DAY!!) It actually takes longer than that to do everything because I get tired and need to rest in between sets. I also do things wrong and then have to go back again.

My previous experiences of physical therapy is very different from where I am now. I have had PT for my neck; you do some exercises. Mostly, I did them -- on and off -- not every day, not concentratedly, nor focusedly, they only took a couple of minutes. I have had PT for my shoulder; more exercises, bands, etc., but mostly light work, mostly manual therapy. Admittedly, I could have been more focused about it, but it seemed to be holding its own and I seemed to be making progress. I have had PT for core strength. I wasn't very organized about that, either. But I gained strength, enough strength that I was able to do my dance work.

Overall, I thought that I worked hard to build and maintain my body. I did my muscle activations in the morning; I went to personal training 2-3 times a week; I went to PT to get some light body work, some ultrasound, some stretches and strengthening exercises which I would do with my trainer; I saw my body worker (a lot). I was able to dance for 5 hours a day.

None of that has prepared me for this; this is the hardest thing I have done, I think. Even my AC separation (which was serious for a manual w/c user) was nothing like this. It was just PT for a local body part. Somehow, over the course of the surgery and the basically 2 months of lying around, I just lost a good chunk of everything. I need to rebuild my whole right side, my legs, and any musculature that has flopped away in that time. My right shoulder wasn't as strong as I thought it was -- OK, honestly? It's a mess (PT girl exclaimed, "massive shoulder dysfunction, cool!"; my right hip is still recovering from the surgery (that's a mess, too, but for different reasons); my legs are deconditioned; my core is deconditioned; there's a bunch of ugliness that links my right hip and shoulder; I still can't freaking straighten out.

That last one really gets to me. Wizard and I have begun to joke about the joys of illegal flexion, but seriously, who wants to straighten out when there is that sensation of tearing every time you try (fortunately, it's just a sensation). I'd rather lie with my knees on a bolster. I've had difficulties with my hip flexors before (somewhere in this blog), but this is different because my whole body is off. I like flexion. I am committed to the comfort of flexion -- but I also want to be able to bend and use my hip as an anchor. Flexion, it seems, is not ideal.

It annoys me that I can't just take the band and pull outwards to strengthen my shoulder external rotation. I've spent all morning sitting in front of a mirror, trying to find the right seated position which will enable me to find the right muscles to move to put my shoulder in the right place which will enable me to find the right muscles to squeeze before I pull backwards on the band. I haven't got to the pulling on the band bit yet. I am still at sitting up and breathing (harder than it sounds because of the hip surgery, shoulder, and involuntary movement). I will next move to trying to lift my shoulders and squeeze my shoulder blades back (harder than you would think with a winging scapula and all kinds of weakness and the involuntary movement).

It annoys me that my hip won't sit properly or straighten. Particularly since the surgery was successful, but why, then, is it still so swollen? (I'm tired of baggy velvet sweat pants. NOT my style).

I'm in part time rehab, full time. And it's a real bummer.

You'd think. "Ahhh. You have a real opportunity here to begin again. To build everything. To study your compensation patterns and figure out how to get things activated, firing, and working properly. You might be able to gain back more than you had before the surgery." But somehow, I can't see like that. I'm bummed. I need to get my head on straight. I can't lie-sit here for ever.

Supported Decision Making and Medical Emergencies/Incapacity

I first encountered the concept of supported decision making at the UN during the Convention on Human Rights for PWD. The practice does not seem to be widely used in the US -- though I have seen it in some mental health law; it's mainly a Canadian/European thing. (Though for my money, I like the way it is integrated into Canadian legislation: it's a legally recognized approach in British Columbia, for example.)

Here are some attempts to define the concept, practice, and application:

Like many Manitobans, vulnerable persons sometimes rely on the advice and assistance of others when making decisions. They may call upon their support network - that is, their parents, other family members or friends - to help them understand their choices. The members of the support network can provide information, ideas and advice that help vulnerable persons to make their own decisions. This is what supported decision making means: vulnerable persons making their own decisions, with support and advice from family and friends, if desired. (Vulnerable Persons Living With A Mental Disability Act, Manitoba).

Supported Decision-Making means a person may accept help in making decisions without relinquishing the right to make decisions. Supported Decision-Making helps a person to understand information and make decisions based on his or her own preferences. A person with a learning disability might need help with reading, or may need support in focusing attention to make a decision. A person who has no verbal communication might have a trusted family member who interprets their non-verbal communications, such as positive or negative physical reactions, or uses Alternative and Augmentative Communication. (Inclusion International. London, UK).

In contrast to guardianship, supported decision-making (SDM) is based on the principle that all individuals have a right to self-determination and respect for their autonomy, irrespective of disability. This means all individuals have a will which provides the basis for decision making. This also means that people with disabilities are entitled to necessary supports for exercising their decision-making capacity; for example, decisions made interdependently with family and trusted others should be legally recognized. In other words, SDM envisions that accommodations will be made in the legal system to enable people with intellectual disabilities and mental health problems to exercise their right to self-determination. (Open Society Mental Health Initiative, Budapest, Hungary).

You get the picture. Wizard and I have been working on what our lawyer person calls our Advance Health Care Directives. In California, there's a standard form for this (here)-- though you can use your own form, of course. I've been thinking about the many cases of euthanasia for people with disabilities, the difficulty of end of life decisions, and the simple horror of having to make medical decisions for someone else.

I hold power of attorney for Wizard, my grandmother, and am involved, lower down the list, in the decision making tree for a third party. I hate it doing it. I absolutely hate doing it. I hate saying no to a treatment course because I believe my grandmother wouldn't want it; I hate saying yes because I believe that this treatment course will improve the quality of her life. I hate the fact that I am flying by the seat of my pants; I believe, falsely of course, that a document would make such things easier. A written statement of intent and desires would not of course make the agony of any given decision easier, but I like to believe that they would at least help point me in the right direction.

It's experimental, but I hoped I would be able to combine the philosophy of supported decision making with my advance health care directive. There's a line that enables you to create a kind of addendum that expresses your wishes. My attorney tweaked some stuff here and there. And this is what we have so far:

It is my belief that all human beings have a will and can make decisions. This includes persons who may, due to a wide variety of medical conditions, including a coma, be believed to be legally incapacitated or disabled. These individuals may merely express their decisions in non-traditional ways. Though the legal and professional communities prize verbal communication in times of crisis, I hold all forms of communication to be equally and legally valid. I wish my agents and my physicians to use all their creativity to explore all avenues of communication, traditional and non-traditional, with me.

Based upon this belief, it is my desire and that, in the event I, Wheelchair Dancer, am determined to be incapacitated or disabled, such that it is believed that I am not able to make decisions for myself, my care, or my healthcare, instead of being entirely removed from the process of decision-making, I choose Supported Decision Making. For the purposes of this Advance Health Care Directive, "Supported Decision Making, shall mean that even though I may have been determined medically and/or legally incapacitated, my agent(s) shall make every effort to communicate with me to (1) help me understand the choices available to me, (2) provide information, ideas and advice to assist me in participating in decisions affecting my care and health care and (3) communicate by any means necessary with me to determine my wishes and desires." Indeed, with the exception of cases of medical extremity, I desire any and all medical interventions to prioritise my ability to participate in supported decision-making. It is my intent, desire and expectation that should I be determined incapacitated, and that I will not be entirely removed from the decision-making process. Instead, through Supported Decision Making, I will continue to participate in the decisions affecting my life.

The above desire regarding Supported Decision Making and my philosophy regarding the same shall be deemed directions and explanations to my agent(s) and shall not be considered or deemed directions, restrictions or other wise to any other person or entity, specifically including healthcare providers. It is my expectation and intent that my agent(s) have ultimate and full authority to act on my behalf with respect to my medical care pursuant to the terms of my Advance Health Care Directive. Under no circumstances shall any healthcare provider delay, withhold, apply or initiate medical care, surgery, medication, or the like, once directed for me by my agent(s) regardless of my desire for Supported Decision Making.

Thoughts?

The Wheels on The Bus

I've been seeing a lot about bus travel here. And ain' none of it gud. Just what is it with the bus?
First, there was Dave's experience; h/t Ruth: the awful story of a disabled man left overnight on the bus; and amandaw's reflections on the bus and social class. I've even written about the bus myself.

It's clearly bus time.

I've been traveling to and from physical therapy by bus: I still can't drive, dammit. My PT asked if I was OK with that. Now, granted, I am a total princess who has been known to take taxis and car services and ... and, true that, that I have had horrible experiences connected to race and gender on the bus (Austin, TX? I won't forget those awful trips (harassment central) on the number 13). But, yes. I am OK with taking the bus. And I said so. She stared at me. So, like amandaw, I ask: just what is it with the bus?

In NYC, the bus is the predominant form of public transit for PWD, the paratrans services aside. You can't use the subway for the most part; if you can't fold your chair into a taxi or if costs are prohibitive, you will probably find yourself on the bus. And you will find a good number of other people on the bus there with you, too. Granted, the bus is slow; it takes my powerchair-using friend two buses and a couple of hours to get to me; it takes me 25-45 minutes, depending on traffic, in a taxi to get to her. I also pay $20-25 if I choose to take that taxi. The bus goes places that the subway doesn't, and many people -- not the richest, of course -- have commutes that involve a bus to the subway. I'd say that the scam artists and "undesirables" haunt the subway more than the bus, but yet ... there still is this thing about the bus.

In SF, the same kinds of "undesirables" hover on BART (the rapid transit rail system) as on the buses; again, I'd say more. But I also see operating a subtle coding. People can take the bus or they can take MUNI (the company that runs the bus system). Saying you take MUNI can help disguise the fact that you actually take a bus, because MUNI also fields trams. There's something about the bus.

Most recently, the disability bus books in the public eye have been Rachel Simon's "Riding The Bus With My Sister" and Jonathan Mooney's "The Short Bus," but we shouldn't forget -- or if you don't know it, check out "To Ride The Public's Buses," (link is to the Avocado Press: if you have a spare $300 treat yourself to the Disability Rag Archives on CD-ROM). Taking this bus, or, more accurately, the right to take the bus and to have the accommodations to make this possible is a central experience in the disability rights movement. The bus facilitates mobility; mobility is a key part of participation in the civic and social worlds. The bus is central.

And yet, for many Americans -- exceptions being many of those in urban areas like NYC -- the bus is a sign of failure. No car? You're on the bus. Somehow, the car and independent personal mobility became both ideologies and practical necessities; the car is a sign of a successful human and the nicer the car, the more successful. The bus, however, is for those who haven't made it in life. It is a moving theatre of sights, sounds, and smells of "failure." And worse, one of the actors might reach across the aisle and touch you, sit next to you, and, unbidden, talk to you. All your protective boundaries are suddenly permeable; you are defenceless on the bus. And all your fears about race and social class suddenly look as if they are about to become lived realities, not just private imaginings. The bus.

It is the fear of that experience, together with the larger signification of having to depend on the bus, the inconvenient bus schedule, the cumbersome bus routes -- Americans don't depend on things, they're free, independent, and self-determining -- that, I think, make people see riding the bus as a negative thing.

But, honestly, my experience thus far has been that the bus to physical therapy is more than fine. It's quick; there's a local and an express version and basically something runs every 15 minutes. Of course, the 10 minute drive to pool therapy is a 45 minute bus ride with transfer(s). I don't see myself liking this much at all (that's the princess speaking; excuse me? I need a driver), but the pool will be critical to my recovery. I don't have anything but physical and pool therapy on my schedule (I have the time -- that's crucial). AND, truly, while I envy the quickness and freedom of a car and can't wait to get back into mine, I am grateful for the time spent out of the house.

And that's the rub. I am aware of the significance of accessible buses and am truly grateful for them. I feel a sense of happiness each time I get on the bus, gracefully turn and land in oh- just-the-right position for the belt first time. I can do that because others fought for my right to do that. But I also acknowledge a sense of irritation: the bus is slow, slower than I would drive, it's noisy. I feel a sense of fear; I have to be quick getting on and off, lest I irritate other passengers (remember this debate in Seattle about whether chair users should be banned from express buses? -- how I miss ragged edge and edge-centric). I don't want to let the side down.

The bus is a site for civil rights. For those of African Americans, for disabled people. And, as I am belted into the front of the bus, I smile with pride. That said, I also acknowledge that in my blackness and disabledness, I lose whatever significations of social class I might have. I am "them" (I am they?). I am scary. (wicked grin).