paidiraiompair: (dreaming)

There's a lot of talk about words in the disabled community.  There are labels, qualifiers, politically correct terms, and personal preferences, not to mention pronoun wars.  I refer to myself and to others who are bipedally challenged as gimp. That word has had strong negative associations.  Overlooking these better-known definitions, I may point out that it also refers to a "cord of various colors/texture/materials bound together for strength and beauty."  Look it up; I'll wait.

I begin with words because there’s a word I've been wrestling with for all of 2015.  It began with a song that wanted to "see me be…..", was pushed along by all those passers-by who felt compelled to tell me "I am so……", and ignited a firestorm over a "lady named Cait."  I’ll bet that if you’re in the disability community, you know exactly what word I’m talking about. You’re probably singing the song. You’ve probably bookmarked (or ranted at) the video.

Maybe it started as an innocent call to find courage within ourselves. But we were derailed with the patronizing label of “inspirational.” Then there came a flurry of videos, memes, songs, and blog posts that ended with an all-out throw-down, with everyone claiming furious ownership of the b-word.

Who is brave, and who’s not? What is brave, and what isn’t?

Though memes can be as infuriating as anything else that boils a complex issue down into a picture and a few words, the social media frenzy got me thinking about my relationship to bravery.

Many people are surprised that a person like myself, who has been a performer most of her life, would have issues with being stared at in public.  But those of us who transition into chairs later in life are often unprepared for the gut-wrenching terror that can occur on our first outing.  We must learn just how inaccessible the world is, and how ignorant most businesses are of ADA rules, and take it in stride. (These new skills go hand in hand with PT and becoming a master of insurance codes.)  But beyond these barriers, all disabled people have to find their own solution to the biggest hurdle: how they want to handle daily interactions with the public. I believe strongly that how one chooses to deal with the often well-meaning but nonetheless rude and ridiculous looks and words is a personal choice.  Whether you adopt a constant "take no prisoners" stance or a laid-back "go with the flow" persona, I call it brave to expend that energy to maintaining your self-respect.  But even in the disability community we call one person “brave” for aggressively calling out an able-bodied offender, and someone else “weak” for just letting it slide.

2015 saw a related social media war about the c-word. Seems like everyone wanted to define what’s courageous, and what’s not. If “courageous” means “proceeding forward in the face of fear,” then how does an outside viewer judge how scared someone is? An event like taking your chair into an inaccessible building is terrifying to one person, but a piece of cake to another.  Does that make the person who attempts the trip anyway is less worthy of the label?  I think of courage as the difference between KNOWING in advance what you’re up against, versus FINDING yourself in a place you never thought you’d be – and conducting yourself with bravery from there.

I think the bravest thing of all is to embrace the life you have, the life you find yourself in, and the life you choose to lead.  The tired argument that “bravery” only has one form or one degree, and pre-judging which actions are inferior and unworthy of that label, is the very definition of a closed mind. And a closed mind is the ultimate result of fear.  

But let’s get back to those videos, and songs, and all the people who want to tell me how “brave” I am for just proceeding along the sidewalk in my chair like I had somewhere to get to. If you tell me I’m being brave for doing something YOU think you could never handle, it isn't a compliment to me. It’s showing YOUR ignorance.  On the other hand, treating me with the normal respect you’d show to any other person in the world is doing me honor.  My grandmother always said "we ALL have a box of rocks." Though all the boxes might look the same, no one but the person carrying it knows how heavy it really is. I want a world where no one feels the need to judge how difficult another person’s load is, and only show a willingness NOT to make it harder. To me, that is the confidence of knowing who you are, and choosing an audacious life.  

“Disability is not a brave struggle or 'courage in the face of adversity.' Disability is an art. It's an ingenious way to live.” –Neil Marcus.

paidiraiompair: (sun set)
 No one ever says to a man briskly walking down a sidewalk in the morning, "Hey Buddy, slow it down!"  Our perception is he's a busy go-getter, bound and determined.  If a women in business heels is going at a quick clip, you can bet no one jumps out of the way like they're in imminent danger of being mowed down. But the perception is different for a person using a wheelchair on that same sidewalk, who is just keeping pace with those same folks. The reaction will more likely be "Hey, SPEED RACER! WATCH OUT" along with leaps to safety (or the famous FREEZE, akin to a deer in the headlights). Ask a chair user, and the stories we can tell.

  I was at a party a while back at a fairly accessible home of a friend. As the numbers of folks grew, getting about became awkward, and a bit tiring for me.  I found a nice bit of floor that was out of the traffic lanes and gave me a good view of the main group of people, new folks I'd like to get to know. Using my past experience as a guide, I knew that my being on the floor would create certain perceptions in the crowd.  So reassuring them with a smile I said to them calmly, "The gimp is going to sit on the floor now. NOBODY PANIC!  I am not injured, ill or "feeling in anyway discriminated against."  It isn't that someone will not give up a chair for me, or any other breach of social etiquette.  The floor is more supportive of my body, and I'd like to be comfortable while I enjoy the festivities.  Thank you."

After nervous laughter and awkward glances between the party goers, things returned to normal...for a while.  Then someone offered me a place on the couch.  Another asked me if I was REALLY OK.  One of the hosts soon produced a pile of cushions.  I declined each politely and with a reassurance that the firm floor/wall was just what my body required at this time. Another few minutes and I had the following exchange with "a concerned Citizen of the Party":

Citizen of the Party:  Are you SURE you are alright?

ME: Yes, thank you, I am having a lovely time. And how are you?

Citizen of the Party:  I don't see how you can be OK sitting on the floor, isn't that embarrassing?

ME:  No, but being signaled out over and over again is beginning to go in that direction. (smile) What's your name?

Citizen of the Party:  I'm pretty sure you can't be OK.

ME:  REALLY!?!?  I'm pretty sure I am.  (looks pensive) Yeah, I'm great where I am.  However, I can see that YOU are uncomfortable. 

Citizen of the Party:  Well of course, you're on the floor, how can I be otherwise.

  Needless to say, I left quietly shortly thereafter.  This was a party for my friend, and though THEY know me and my ways, their guests did not and this night was not going to be about me. I went home wondering  where I went wrong.  Why despite my best effort of communication were there folks who seemed determined that I was, well, lying. Or was it that something about their intellectual  knowledge that had them thinking THEY knew better than myself what my body could do or what it needed.   There was a touch of anger; maybe I was tired of being SO concerned with others' discomfort or preconceptions to the point of keeping myself quiet.  I DO have a gift for stating the blatantly obvious with an unfortunate "outside" voice which I try hard to silence.  Also, a girl in a wheelchair is a novelty for some, so I try to cut'em some slack. 

  When new audiences come to a performance of physically integrated dance, they bring along their own preconceptions of what they will see.  One friend stated that before the curtain he thought, "What are they gonna do, tilt and wheelie and steal each other's wheels?"  Actually in that concert we did those things and much more. In the lobby afterwards we were pleased to see our work had opened another mind about what dance is and can be. We get a lot of questions about the mechanics of what we do, and I smile and thank them and let others do the talking.  

   I struggled with what to say, how much to say, and IF to say anything at all about the particulars of my own or other wheel dancers body issues. Maybe it is fall out from the general impoliteness of a stranger's approaching someone with a disability with "So, what's wrong with you?"   In integrated dance education, we create an environment of "put the movement it your OWN body, adaption is the goal". However, a professional performing art company's standards can be on another scale. I know this because I've been an actor, director, stage-manager, and techie since my teens. Dance company etiquette was new to me, and I couldn't shake feeling like it's "unprofessional" to question anyone. I lost my voice.   

  In physically integrated dance we ride the line between "pushing your limits" and "adapting to the body you have."  Our company often jokes about ignoring the limits of physics.  We are headed by a broad artistic mind that stops himself  in the question "can we do (such and such), to a more positive "of course we CAN". The added art of adaption, THAT is a part of what we do. It is learning the same dance movements, but incorporating the individual strengths, height, arm length of each bi-pedal partner.   Sometimes that means trying to see how one chair dancer can duplicate a move using different body resources than another.  I won't lie, sometimes it is frustrating, even intimidating. I had to find a "work" voice, and doing so let me HEAR what another perceived of me.    

  That intimidation, I know now, came across as "freezing out" a choreographer's process.  That wasn't what I intended, but it was the perception. However, rehearsal isn't the time to talk about those things, said the rules of professionalism in my head.  So there I would be panicked, thinking of some way to stay calm, reigning in the innate frustration of not knowing how to say, "I don't how to do that with the body *I* have, or "I've never tried that before, can you help me feel safe in giving it a go".  I was terrified to even admit my learning process might be different from someone else.  I didn't give credit that maybe that was exactly what I should say. And shame on me, worrying about what others might see as weakness.  I was robbing myself of what I love most, which is creative movement filled with technique and grace, drama and laughter, and most of all heartbeat.
  I've always looked to my Papa and the BlueRidge as the anchor of who I am, but also the place to go to find wisdom in silence.  There, I admit, I took some sound advice. Thinking a thing through is good, but you can also psych yourself out with inaction.  Giving up is not in my nature. Take a deep breath, do your best.  Communicate the obstacle that no once can know without speaking up. Like the party and in life, BRAVE is saying what you need in a safe environment to TRY and then TRY some more.  Courage is overcoming your own fear that your voice will not be heard or even wanted.  It IS the only way to set the stage and be part of the creative process in whatever you do.    

  That first step in finding a "work voice" isn't easy to do, but I report that I found open ears and a dialogue that sees a challenge as a good thing.  My mentor, Carol Mitchell Leon once said, "We're stronger as one company when we listen with our whole selves and respect each spirit in the work."  I a am dancer; Everyday there are new things to learn and old ones to perfect. And sure, in the past 5 years I've broken a toe (lucky one I can't feel) strained my diaphragm (in a faulty attempt to substitute inaccessible muscles) and busted a knee cap (which unfortunately I COULD feel)  But that is the lot of any dancer. They are scars with better stories than tattoos.   Of course we have the added "tire burn" and spoking incidents unique to integrated dance.
   My Truth:  it is totally 100% worth it.  It's what gets me up on cold mornings and brings me home after late-night rehearsals.  It is muscle cramps, swollen fingers, loud knees and a spine that "twangs" in pain just to say "hello".  It's all good.  

As Papa says, "Be plucky, like an Indian".
(this phrase and the title are part of a poem Advice While Bandaging My Stubbed Toe ~ Awiakta)

A Year Ago

Nov. 23rd, 2015 07:54 am
paidiraiompair: (dance warm up)
 So I took my 50th year of life "off" for many reason.  Reasons it will take much of following this year to express.  The dance company had as intensive schedule last year, which I can share parts of on with this link of my You Tube Channel:

Take some time to see some of the incredible works I have been apart .  For the rest, stay tuned.  Today I give you some of my most beloved musical numbers to my jam song for 2015:  It's nice to be back!  


paidiraiompair: (Default)

August 2017

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