Crip Anatomies

Many people in the disability rights movement speak about their assistive technology as part of their body. At some level, we are clearly saying that we welcome the crutches, canes, and wheelchairs as part of our anatomies. But I have always thought that we haven't always been literal with each other about what exactly that might mean.

When I stand using crutches, how do I interpret them? Do I analyze their significance to me emotionally? What do I think about the anatomical function that they perform? Or, how do I think about what they do for me? And when I add them to my arms what happens to my flesh arms? What if I saw them only in terms of their movement function? If I call my wheelchair a part of my back or, even, a part of my backside, what happens to my flesh? My spine? You get the picture. Thanks, Laurel.

I am beginning to be disturbed by the almost universal insistence that my body, my flesh body that is, disappears when I gain an assistive technology body part. I would rather begin to investigate myself and my movement potential as a kind of hydra. And I do mean hydra instead of cyborg.  In cyborgs, the mechanical and the fleshly are distinct but fused into one humanoid and recognizably humanoid organism.  There's no excess; technology replaces the flesh bits.  Hydras seem to allow for the possibility of the technical and the flesh to continue to exist together, even if they organism they jointly create is now akin to that which traditionally has been relegated to the category of freak or monster. 

In my mind's eye, I begin to see myself as having multiple spines, as having legs and wheels–my chair does not replace my legs. My crutches are part of my arms–when I use them to make a dance line–and extra spines when I use them to support me and when I shift all of my weight on to the conjunction of arm and crutch. In other words, I would like to think about disabled anatomy not as a set of functioning and failed body parts, bits that have partially been replaced by technology, but as a body that is extended and expanded by its technology.

The risk here is that we/I create bodies that are subject to being seen as freaky, grotesque, and/or carnivalesque. Disabled people have a long history of being showcased in this way. But I wonder if times haven't changed a little -- could it now be possible to think of our bodies in these hybrid ways? In my dance practice and in my life, it is a risk that I would like to explore.

Living At 2000 Feet

Our house is 2000 feet above sea level; that means, we occasionally get snow, ice, freezing rain and other kinds of weather crap.  At times, though, the beauty is incredible.  We wake and the fog covering of the valley is like an ocean; waves of mist dissolve upwards as the early morning grey burns off.

I like it here.

But being so isolated can be scary: I have begun to use the house alarm when Wizard is away.  I'm not sure exactly what I'm scared of.  It's not like someone couldn't break a window and get in.  Who is up here, anyway?  (Other than the pot growers, and I'm no threat to them.  If asked, I might make a good customer.)  Cellphone coverage is unreliable, but we happen to know that the police can make it here in 12 minutes.  (That could be a very long 12 minutes, of course; it might even be 11 minutes too late.)  We can also be unable to leave here.  The previous weekend brought snow, ice, and freezing disgustingness that made the narrow windy road with drop offs and curves more than I think my little car could handle.  I was driving home on Friday night, rounded a curve and suddenly -- yes, quite like that -- found myself driving on inches of white stuff and my neighbor stranded.  There was a white line of demarcation.  I made it up, but don't think I could have made it safely back down.

I'm beginning to understand why gurus took themselves off to mountains to think.  The view is fabulous.  The quiet resonant.  The doe and 3 fawns who attack what vegetation I have attempted to plant gaze softly back at me.  Am I one of them?

I'm finding that my house is serving as a respite; that I worry less about the intensity of the world when I am at home.  When I am out and about, in the car, driving, moving; I feel alive to the injustices; my sense of outrage is strong.  At  home, surrounded by physical comfort, I feel the stresses of the day and the world (lived and only experienced through the work of others) begin to fade away.  I no longer hold the anger and wiredness in my body.  I begin to relax and let the supportive architecture do its work.

Some days, I fear that this comfort in my space and my body could lead to intellectual laziness.  I fear that the fire that drives me will settle down to a too comfortable simmering ember or two.  I blog less frequently.  Some days, I recognize that the expansiveness allows me to think differently.  My writing is longer and more complicated; I take on more topics that aren't more directly focused on my day, my life, my experience.

I think that this could be a meaning of home.  Not so much a castle as a sanctuary.  One in which I can experience all aspects of my body and mind in new and different ways.  One which enables me to leave for the world in a new and refreshed way each day.  That there can be such comfort in a place is continually surprising to me.  And that I could ever need comfort is also a surprise.  I wonder if I've reached a point where I can say that I need to withdraw to return.

I feel that withdrawal as a kind of ripple rather than an abdication (though believe me I'm good at that, too).  There's a movement in gyrokinesis where we attempt to "wave" through the spine with ocean breath.  What is ocean breath?  "It's a crescendo just like the name connotes. Like an ocean wave, it seeps out of the back of the mouth slowly with the suspended and held opposition at the top of the Arch, then intensifies into a squeeze at the end of the curl, creating a crescendo of both volume and intensity."  (more here).

Strange that you can grow with a place.

The Price Of Beauty

I love the ongoing experiment that is my hair.  I really do.  But I have finally reached the point where I think my hair might be costing me more than money.

Over the past 4-5 years, my brown curls have seen some blonde, some copper, some lilac and some red; I am currently sporting 2 shades of red and a white blonde.  I colour my hair perhaps twice a year, and I do it because I was afraid to for many years.  Over the course of the years, I built up a meaningful relationship with my colorist -- he gets it when I come in and say, "but please don't make it look natural."  He's spent a fair amount of time thinking about where to put the colours so my hair works under stage lights (I am so totally a creature of artifice!)  And then.  Then, he changes salons.

Of course, I decided to go with him.  You can imagine my concern when I called for an appointment and mentioned the wheelchair.  Colorist has moved to a new hip salon in San Francisco; it's on the second floor.  This is supposedly no problem; there is an accessible/handicap area.  I'm a little worried when I hear that, but there's no way I can imagine the actual situation.

The accessible area is downstairs, separate from the main salon.  It's through the back door, of course.  And it's essentially a hairdressing sink, a mirror or two, some lights, a couple of chairs and a product table in a slightly wider part of the hallway (as it turns a corner).  The walls have been painted and someone has stuck an attempt at ornamentation as you enter the space. If you turn your head, you see the mailboxes and the street.  If you turn your head the other way, there's a curtain and the hallway continues to the bathroom.  You hear the noise of the "real" salon upstairs.  There's people talking, moving laughing.  My colorist sticks his iphone in a little dock.  A pathetic tinny sound comes out and that's it.  When he leaves to mix colour or while I sit to let the colour take, I'm on my own.  There's no way to reach anyone upstairs.  And there's no way to be part of the vibe.  They don't even have a way for me to pay in privacy.  There's no mobile card reader.

I'm heartbroken.  Disappointed.   And ANGRY!

I make my case to my colorist.  The situation is bad.  He asks the owner to come down.  I make my case to the owner.  None of this is illegal I reinforce, but it is nonetheless discriminatory, unfair, and wrong.  She points out that she has had ten people in the area since they opened and that people have been coming back.  I return that not everyone has the courage to speak up, that some people might choose to trade second class treatment to get their hair done.  She says that some people prefer privacy; I say that privacy should be a choice.  She says that they had no choice -- this was the only thing they could do to get accessibility and to be able to open (guess no one planned accessibility as anything other than an add-on).

We talk.  By the end, I think she gets what I am saying.  But there's not much anyone can do.  They rent the space; they don't have the rights to put in an elevator.  She says that she will think about how to make the space more of a par with the upstairs space in terms of decoration (did she honestly think that people with disabilities would be so grateful to get in the door that we'd be happy with the hallway?)  I'm going to keep talking to see what she comes up with -- and what I come up with when I am less angry.  I'm going to go back once to see what they've changed.  And if I'm still sitting alone in a hallway, I'm going to have to start looking for a new colorist.

Small Victory

Rehearsal was cancelled today; I have head space for things other than, well, rehearsal.

Like every other manual wheelchair user, I spend a fair amount of time worrying about my shoulders.  They are of particular concern because of the intersections of dance and wheeling.  Shoulders weren't designed to do what I and other dancers and athletes do on a regular basis.  They weren't even designed with the stress of wheeling in mind.  And then, there's dance.  Non-disabled dancers can injure or strain their shoulders, too, particularly if they are weight-bearing on them.  And improper technique can add strain -- all that lifting your arms over your head.

Yeah, shoulders.

But the good thing about my shoulder is that it is finally getting better.  I've changed the way I push.  I don't do the "from behind up over the top and down and round, figure 8" thing.  I continue to work with my bands to build strength through the complete range of motion.  I get regular body work to stretch the muscle and take care of any strain patterns.  I take good care of my shoulders.  Today, I saw that work pay off.  I managed 5 sets of 10 pushups with 10 crunches in between.  Yesss!

I'm not sure that this insulates me from ever getting shoulder strain.  The anatomy isn't there.  But I do feel that, for the moment, I am doing all that I can.  And that I don't perpetually have to be scared that every small thing will wreck my shoulder.

Living On The Island

To the left of this text is an image from a 2006 emergency awareness campaign from New York City's Office Of Emergency Management and other related agencies.  In the wake of Hurricane Katrina, NYC started an ad campaign that lived on bus shelters, mainly, as far as I remember.  There are two slightly rusted blue plaques with white writing on them.  The smaller one reads, "Get informed.  Be prepared.  Have a plan. For more information about what to do in the event of an emergency, call 311 or log onto nyc.gov/readyny"

The larger plaque sports the following text, "Why should you worry about a hurricane?  Then there's a black and white picture of Manhattan skyline taken from the water.  Dark grey welling water occupies about half the picture.  Below it, more text reads, "It's not like you live on an island."

The first time I saw this picture, I was delighted.  I had utterly forgotten that Manhattan was an island.  I mean, I knew it was surrounded by water -- I was passing the East River every day; I listened to traffic news about the bridges and tunnels.  I knew what people meant about "bridge and tunnel" folk -- but that somehow didn't seem to add up for me.  An island?  Really? Wizard checked the flood plain maps.  Sure enough, we were living in the flood plain.  I immediately discounted the importance of that information; we live on an upper floor.  But then, I began to get serious.  That flood plain might take out the elevator, power, access to take out, any way to get back in or out of the apartment ....  Oh yes.  We live on the flood plain.  Manhattan is an island.  Who knew?

The 2006 campaign is now one of the older ones, but if you live in the city, regardless of your disability status -- though particularly if you are disabled -- you should check out the information and peeps at nyc.gov/oem

Katrina seems to have  been a turning point in disaster planning for people with disabilities.  In January 2007, the National Institute on Disability and Rehabilitation Research released its final report on disability and Katrina.  That report is available here, in PDF format; it makes for grim reading.  Since then, I have seen numerous conference announcements, notices for research reports and lists of paper abstracts talking about disaster planning for people with disabilities.  (An unfortunate side effect of all this good work is the now popular phrase "vulnerable populations.")  You should have your own disaster plan.  And while your plan may not include the Bush recommendation for duct tape, you should figure out stuff like where you are going to go/meet up,  how and who you are going to contact, food, water, ....  a plan for your pet or service animal, etc. etc.

To be honest, Wizard and I don't have a plan for either place.  In NYC, who knows.  We have work to do here.  In CA, we have an earthquake kit that his workplace issued to their employees (it doesn't include enough for the employees' families).  I think of this as generally evil on the part of a massive corporation rather than genuine goodness -- let's make sure our workers can keep working -- but that's just me.  We know that cellphone communication will be a zero and that the internet will probably be unavailable, but we haven't really solved that; we depend on our cell phones and the net.  We do have a landline, but that assumes we can get home.  We should have a little handcranked radio like the ones our NPR station is always giving out (but I think it defeats the object to take the free gifts).  We have no plan for our cat.  We should have extra batteries.  We should have more water and possibly some more food.  If things do go belly up, we might have power -- the solar panels give back to the grid; there's a generator somewhere, but how long that power lasts is a function of how much gas there is in the propane tank at the time of the disaster.  And, as a recent power outage showed, we have no idea which outlets will be working.

I've always joked that when disaster strikes one of us will be in NYC and the other in the Bay Area.  And the disaster will hit both of those areas at once.  We will be utterly and massively screwed and will have to make our way, push, step, push, to Wizard's homeland in the mid-West.  But our chances of living a fictional post-apocalyptic utopia are severely diminished by the fact that we aren't important people on anyone's watch list and the fact that my ability to move around will be severely limited.   Even on an individual sustainable scale, agriculture and wheelchair use aren't easy companions.

We probably should have a plan.  We live in two areas of the country that are higher profile disaster areas: NYC for terrorism and, apparently, hurricanes (!!) and the Bay Area for natural: earthquake and fire (and possibly terrorism).

Just yesterday, a court ordered Los Angeles to get a disaster plan for disabled folk.  In January of 2010, DRA announced a settlement ordering the City of Oakland to get disaster planning under way.  People are talking about planning.  As best as I can tell, everything in the Bay Area is hyper local.  (I've been thinking about this for a while and actually cannot understand what is going on.)  This is what I understand, but I might be very wrong about this:  There is a network of agencies that have come together to talk and to help the actual responding organizations plan. It is loosely known as the American Red Cross Northern California Disaster Preparedness Network.  But they don't have their own site; their name shows up on a variety of local sites, many of which seem to be by county.  So, you need to know what your county will be doing and where your local county shelters are and whether or not they are accessible.  You need to have your own plan.

The absence of centralization means that there are lots of websites with really good partial information.  I rather like PrepareNow.org and this site from Santa Clara County.  If anyone else has actually figured out how this all works, please let me know and I will update and correct.

In as much as it is possible for us to do so, we all, disabled and non, need to think ahead, to plan, to help others to help us in the event of disaster.  It looks like a lot of hard work, but our lives depend on it.

36 Hours

This is how it goes.  Sometimes, we have residencies as part of our touring engagements.   We spend 4 or 5 days, sometimes a week, in one location performing, teaching, doing outreach ....  the works.  Sometimes, we arrive the day before we need to be on stage for tech.  Sometimes, we do what feel like "hit and runs."  This week was one of the latter.

In the last 36 hours, I left the house at 7.30 am, drove to the airport, boarded a plane, and arrived at our destination.  And that's where it all began.  (Sometimes, it begins at the airport when we try to check in -- does a wheelchair or extra wheels count as baggage or medical equipment??  And how many pieces of medical equipment do you need, exactly???)

Transportation is one of the biggest challenges at our various touring destinations.  For a variety of reasons, we only fly on large planes to large hubs.  That means, we drive sometimes 2-3 hours, sometimes more to our actual destination.  We've worked this one out.  We rent one SUV-ish kind of van and one wheelchair accessible van, divvy up the suitcases, transfer whoever needs to be transferred, build cages and boxes out of wheelchairs, suitcases and other crap, pile in people, tie down chairs, and ...  go.  Sometimes, a presenter arranges to pick us up; that's usually pretty easy, too.  SUV, van, ...  the presenters usually have it figured out.  Sometimes, however, we use local transportation, and that's where the fun begins.

We reserve wheelchair accessible transportation for 3 people who use wheelchairs and regular transportation for 4 people who don't.  You'd think that would be doable -- simple, even; it's certainly clear -- but it often is an utter mess.  Each place has a different way of solving the problem; each place has a different way of screwing it up.  Sometimes, it seems to be necessary to distinguish between manual and power chair and sometimes, a chair is a chair.  Sometimes, everything is there; sometimes, the non-disabled folk take off in their transportation, leaving us to wait and hope.  Sometimes, no one goes anywhere. ....  We once had to wait two hours for them figure it all out.

This time, we got there; there was some negotiation about how many wheelchair users could fit in a van, what accessible meant, and how they meant to manage it all.  Solution?  Non-disableds take the regular shuttle.  And then, there's a wheelchair accessible taxi that in theory could hold two manual wheelchair users, but has tie downs only for one ... and transfer space for the other (as long as several inches up and away are fine with you) was the solution.

I hate this.  Our non-disabled dancers are amazing at travelling as a group with us.  They smooth away the barriers that make disabled folk second class citizens.  That's a LOT of work for them.  But they do it -- now, it seems, without even thinking.   They take the elevator, stay on the plane with us, help us with our stuff, lift, load, balance, stay with, wait, .....  But transportation is one place where we often end up segregated and because we are so much together, it really stands out.

We get to our destination -- we perform at 7 and it is already 4:30.  In some ways, this is not as bad as it sounds.  This is not a massive theater performance with lights, sound, tech, ....  We will be dancing on a ballroom floor with minimal lighting, and we will be using our ipod.  Nonetheless.  It is close.  There's no time to swim or run or do a full body warm up -- extra necessary because we've just spent time cramped up on planes and in vans.  We check the place out.  There's an area behind the performance space where we can put our stuff and stretch.  We space our pieces, noting parts of the floor to avoid, testing which moves will have to be done with more care (floor slippery), judging how much force and momentum to apply (floor sticky), figuring our where to put ourselves.  How many pushes does it take to cross the space?  Someone from the venue points upward and asks if the lights are too low.  We pause for a second -- none of the lifts in this selection of our rep go that high; it's all about the ground.

Then, it's over.  We've done everything once.  We run upstairs, change, put minimal make up on, and do what we can for our bodies.  It's 6:50.  I leave my hotel room and creep into the area behind the performance; I'm the last to arrive.  (eek)  We've been told that they will begin a little late; we're ready, though.

The dancing is really intense.  I am really proud of us and what we do.  The performance space really isn't the best.  In fact, it's quite dangerous in a number of regards.  And that shapes the performance.  We slow things down, but what we dance is new delicacy, new pauses, sensualities, new time, new connections, new meaning.  We are alive to the space and to each other and in that moment, create new work.  It's not that we turn lemons into lemonade; that would be too simplistic; it would underestimate what we are actually doing with ourselves -- the work, the focus, the care.  To say that would be to minimize how we know each other and the work.  Some things don't go perfectly; a jump, a landing, a balance, and I feel my wheels begin to slide.  With the audience seated on 3 sides of 4 and all the walls looking exactly the same, I turn, turn, turn, and, for a few seconds, I fear that I have lost track of where I am.  I am about to panic; where's front?  I'm saved not by my sight -- everything looks the same: people, walls, light -- but by my muscle memory.  My chair has turned just the right amount, apparently, and I am just fine.

Then, it's over.  The sanctity (and protection) of the performance is broken.  People wander on to talk to us, cut across it as they leave the room, and we mill around.

Dinner.  A dip in the hotel spa/hot tub/jacuzzi to soothe away the aches and bed.  Breakfast.  OK.  I didn't make breakfast.   We are due to meet at 11.  I leave my hotel room at 10:45, grab coffee, and meet.  There's a workshop.  Then, we're done.

Before we've even finished checking out, the transportation dance has begun.  This time, the wheelchair accessible van arrives first; there's no sign of any other kind of transportation, so we get in.  The non-disabled dancers wait.  We get to the airport, check in, clear security, and, yes, over an hour later, they are still waiting.  It's not clear what went wrong.  They certainly couldn't have come with us....  I'm a little worried -- the security lines are long and intense .... A plane flight.

At 5:45 pm, I start my engine, slip in to rush hour traffic and begin to drive home.

Taxi Scenes

I'm back in New York and, suddenly, the whole taxi scene is different in some ways ....

Image 1

No one has passed me by.  All the drivers have been quite solicitous and polite to me.  All of them have offered to stow my chair and to help me break it down.  Several have asked where I would like them to put it.  Is DRA's taxi suit making a difference already?

Image 2

All other taxi fronts are the same, however.  On Friday, as I was struggling through slushy road, overplowed curb cuts and up onto an unshoveled sidewalk (park backing onto salvation army...!!), a woman offered to help.  I was so inspirational.  She didn't know how I did it.  What a spirit I must have.  Oblivious to my increasingly murderous sentiments, she then asked me to help her (as if it were a quid pro quo).  Would I get her a taxi?  They won't stop for her, but they would stop for me ....  Her voice tailed off.

I laughed aloud at her.  Was she serious?

Image 3

Name and shame.  Would the person driving 4H73 on Sunday at 12:30pm stand up and take his bow for being asshole of the year?  I get right in front of 4H73.  He stops.  But he won't let me on.  He's had people "like that."  My chair won't fit in the back.  I argue.  Oh no.  He's had people like "that."  And, in disgust/disbelief, "I'm supposed to put it in?"

On Friday 27th, I was happily travelling to NYC for a weekend with friends; by Monday 8am, I was on plane back to England for an urgent family trip.  On Friday Feb 4th, I was coming back again.  All I needed was a taxi so I could make this flight (yay for in-flight wi-fi) back to SFO.  So, Mr. TaxiDriving Man.  Where's your humanity?

For a while, I've been trying a different strategy with taxi drivers.  When I have the money, I tip extra.  In the hope that the good will earned will encourage the driver to pick up a wheelchair user next time around.  Now, I'm thinking I should balance the carrot with a stick by reporting every idiot who refuses to take me.  I'm thinking of a site where you could just text the number of the cab, date and time would be recorded by the text or if necessary included, and some details of the incident.  Kinda like the popular SMS postcard sites.  Or DRA will just settle up and things will be better.

Oh!  And a random thought, why are there no accessible hybrid or electric cab options?  Why must we choose between access and the environment?