May. 28th, 2018 12:49 pm
paidiraiompair: (arty chair)

There are people who see others 
as merely furniture.
Moving from room to room,
they are deciding 
whom to re-upholster,
whom to replace,
who no longer suits a purpose,
clashes with the decore
or just isn't comfortable anymore.
there is a favorite chair,
a well-lit desk,
or a warm bed......
But they will curse it just the same
when they bump into it
stumbling in the dark.  
paidiraiompair: (dancin' in lot)
“They say dance"like nobody is watching". I think that implies that we are afraid or ashamed to dance in front of people. I say dance like everybody is watching, dance like your children are watching, your ancestors, your family. Dance for those who are hurting, those who can’t dance, those who lost loved ones, and for those that suffer injustices throughout the world. Let every step be a prayer for humanity! most of all dance for the creator, who breathed into your soul so you may celebrate this gift of life” 
- Christian Takes Gun Parrish A.k.a. Supaman


Jul. 14th, 2017 10:52 am
paidiraiompair: (arty chair)


All they saw was the crying wheelchair in the "accessible" space on the train.
Caught in their own  relief of making the connection, they missed 
the complaints of the woman beside her who wanted the double space 
for her own larger power chair,
or the inadequate "accommodation" for being able to ride with only a wobbled table
as a constraint.  
Accessibility isn't one size fits all.  
Those in the car didn't see the painful rush to board
where there was no ramp and crawling was all there was
or the strain of bruised hands beaten in the mad dash.
No one took note of being left on the curbside with the luggage
as inanimate as suitcases, 
being talked over while frustrated voices demanded in PC terms
"where are your handlers?"
There was no connection with the unkind words of exhausted companions 
apathetic to the shaming tones of "*I* don't need a cab" 
blind to attempts to carry on, apologize, be useful,  
keep up, 
keep quiet, 
keep going, 
keep smiling.
Now surrounded by pity, puzzlement, and exasperation 
vainly hiding her face with only her shaking hands, 
exposure overwhelming attempts to subside the tears...

She was a girl crying on the train, and no one got it. 
paidiraiompair: (power)

 Perspective can be an enlightening thing and therefore I present you this metaphor.  It caught fire amongst some bloggers a while back and I've been pondering the scenario as a way to present a truth many deal with every day. Open your mind and consider:   

Imagine everything in your house is on fire, and you’re standing there in the middle of your yard and the fire department comes and says to you, "Describe the fire to me and maybe we can find what caused it.  We'll worry about putting it out after that"  (The writer acknowledges that the best time to get coherent information about the roots of the chaos, might NOT be at the height of said crisis, but I digress)
So you say, "Well the fire in the curtains is the biggest but the fire in the photo albums is more important to me. I mean, there's a fire in the couch, which is really inconvenient but I've got used to not using a couch. I mean, one can sit on other things"
The fireman says, "Oh. I wouldn’t worry, photo album fires just happen sometimes.  Now your TV is on, so it might be electronic, but that would cause other things like fire in the DVD player.  But neither of those are burning......" 
Now I know this sounds crazy but hang in there with me, cause when this metaphor hit my social media, here are some of the responses that others who have to deal with "fire" have heard from the same department: 
"Water can do a lot of damage. It's risky, and you're going to be in this house for a long time yet, so we want you to try smothering the fires with heavy blankets first since that's less damaging.  It won't stop the burning, but it will make the smoke less annoying for others."

 "We don't want to use water to douse the fire, people get dependent on water when their house keeps burning. Have you tried thinking mindfully about the fire?"

Some suggest that maybe the fire department could put the fire out on the things they care about, but since they don't know what keeps starting them, they'll just catch on fire again.  The fire chief replies "little fires aren't a problem if the roof in not on fire. People have worse fires." 

When their request for assistance with this fire isn't getting anywhere, one wonders if maybe coping with them alone might be a solution, though dealing with fire all the time really cuts into getting things done in a day. Bosses don't really care about personal fires, so long as one isn't burning at work.  Friends are distressed by the smoke and want to understand.  Well-meaning friend: "Fires are the WORST. Sometimes the bonfire in my backyard gets a little out of control." You look back at the hoses and axes and think, maybe they're right, some people are freezing to death, you should be grateful you have a fire.
Flabbergasted, the fireman finally concedes "Look, I can only handle one fire per call. I can douse the couch fire for now, and check back with us later if you just HAVE to worry about those photo albums." Adding  "Beware of the firefighting techniques advocated by other people with their own fires on the Internet. They're not trained, firefighters. Their advice could be dangerous."
It's odd that now there is shame in being on fire.  One professional's look and criminal intent is focused on the sheer audacity of not just burning in silence.  It's a cry for attention.  An excuse to not go to work. A bid to rid oneself of personal responsibility.  Doubt creeps in, is the fire real? Subconsciously am I an arsonist?  If the flames aren't imaginary then water should work, and if it doesn't then what?  Deprive it of oxygen, smother it, douse it in chemicals.  Use implements to remove it from the whole?  Sometimes all that seems to happen is a fire wall's built to contain the inferno, as the fuel, the energy, is consumed.
The victims have been given notice, laid off, discharged in moral opprobrium, before their conflagration effects all.  

*The writer acknowledges those words in italics as inspired by those of the blog's post followers, and gratitude for their honesty.  
paidiraiompair: (Default)
Hello Dream Width, heard yor missed me! It's been a non stop go go go with our Dance company, and today I am leaving for a week long tour with them to SPAIN! As promised, I'll have some great new essays starting June 1st!
In the meantime check out a "photo essay" of sorts and find out WHY the world needs ART!

So lovely. Thank you for this, @oji_dannelley, and your message needs to be heard. #poweron #disabilitypride #365dayswithdisability ・・・ A few weeks ago our Artistic Director challenged us to answer the following question: "WHY should people support physically integrated dance?" A lot of good answers were forth coming, and I thought about what my own personal goals are as a dancer with Full Radius.  As a parent and a former teacher having the chance to help children envision their future was always a moving and powerful thing.  All of them deserve to think "outside of the box" and Art nurtures and encourages that in their minds. ALL KIDS.  There is a real image that physically integrated dance brings to the world.  Especially for children with physical disabilities, who are not memes lookings with far fetched dreams of the dance. One of the amazing realities is that when the community supports the arts and specifically companies like Full Radius Dance, then little girls and boys in wheelchairs, or with any disability can, will  and DO grow up to be professional dancers.  This photo is the product of a project that counters the "inspirational" memes that have someone with a disability longing to be abled body.  They do not need to be fixed, only challenged to open their minds to new possibilities.  Full Radius Dance believes: Your body is perfect. Your body has undiscovered movement. Your body should experience dance.” That is why I work for them, why I support them and why I think you should too.  Please consider becoming a sustaining member and joining our Circle of Support now with your one-time or monthly gift. Donate securely online or by mail to Full Radius Dance / P.O. Box 54453 / Atlanta, GA 30308. Please see the link to our site below.

A post shared by 365 Days With Disability (@365dayswithdisability) on

paidiraiompair: (Default)
As you all have been so awesome and patient during my year of silence (trust me though I got some great posts set up to start in June) I wanted to share this video with you. It is AMAZING and wins the "LOVE IT WITH A MILLION BILLION FLOATY HEARTS AWARD" from the #sisterhoodofthetitaniumbattlespork AND the #worlddominationtwins Enjoy!
paidiraiompair: (dancin' in lot)
“Dance, when you're broken open. Dance, if you've torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you're perfectly free.” ― Rumi    
paidiraiompair: (stepping stone)
 "dancing is an important part of music, but so is crying. ~ Katie Melua

My first bio in a program for dance had the line "I have loved dance since the moment Papa put my feet on top of his".  "Juking" as it was called in our home took the forms of Irish jigs, jitter bugs, texas two steps, the twist and later the hustle and other forms of line dancing.  It was turning on the giant stereo record player/8 track in our big living room way up loud.  It was laughter of teaching each other the latest steps.  As the generations gaps of my vastly spaced in age brothers came and went, this one private in home tradition could put a truce in on-going fusses, or put closeness to teen siblings for maybe an hour. Though tastes varied, we could all agree on Hank Williams, Elvis, the Beatles, The Eagles and any thing on the infamous Saturday Night Fever album.  As the only girl, I got to learn them all. It was often silly, but always happy.  
I performed in my first theatre play at 6, given the main role due to a freak ability to learn large amounts of dialogue quickly.  In the front row would be Papa.  For the next 10 years of plays, and as times changed, into the newer styles of performance art, he was there for all of those too.  (My first paid gig was as a gymnastic dancing piece of carpet, hand to God). He said to me in his lilting accent something he would say often, the world of abstract art not being his forte, "Baby, I didn't understand a bit of it, but you were the very best one".  
  He was there like that for all of us, despite the wide and often unconventional paths we took.  For me, I did some sports and a brief time in band, but theatre was my passion. No one was prouder than him when I won the lead role at 13 in the high school senior play.  For 30 years, even when I was only the stage manger, lighting or props designer, he was there.  He watched every show I directed, even joining the board of my own business production company.  And when I changed my focus to learn integrated dance, he was right there opening night, and every year.  Pride in his eyes, "Baby, you're so graceful up there".  That validation, bias as I know it was, always meant more to my heart than any review.
This year's big intown production, included a piece about the U.S. immigrants of the early 20th century, and I was portraying a girl from Ireland.  I was looking forward to this tribute to my Gaelic ancestors and thought how my father would enjoy it.  As I was about to leave for the theatre, I got the call.  Health wasn't going to allow for the 4 hour round trip from Papa's home to see me.  Of course I said it was fine and was more worried that my family was well and taking care of themselves.  Then I started the drive into town.  I navigated the streets with slow silent tears, feeling a bit foolish.  I pulled myself together, started the makeup and hair process, putting a Pink Floyd mix-tape in my ears. Warmed up and game face on, I lived up to the standards of performance I always strive for in my work.  Every audience deserves your best show.  
As the last number faded to dark and we made our way forward for bows, the lights came up.  There in the those same seats were now the applauding smiling faces of my children.  I fought the tears back and winked to them and made my way backstage.  In the lobby I hugged them and said how happy I was they came and other small talk.  Later, sitting briefly outside between shows, I let myself cry, not just in saddest, as I wrestle with the reality that my Papa, is in fact, very likely mortal.  I also had tears of joy.  I don't just dance for myself, for my own spirit.  I dance in the love of the family who always supports me, But for now on it will be in the faces of my kids, proud I hope.  Just like the show, LIFE too, must go on.  And I am damn lucky.  

note: this image is of a stepping stone is on the sidewalk near the neighborhood I raised my family
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)
paidiraiompair: (power)
So one of the reasons I stayed so quiet this pass year...and yeah F*CK THAT!

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: (dance warm up)
Sometimes in the social media world of "disability forums" lines of discussions can degenerate into arguments of "gimper than thou".  Folks turn on one another over who should park where, who should use which stall, get put in the front of a line, the first row or get their gas pumped.  They argue over who should or shouldn't be in a wheel chair.  Let someone stand up or be able to walk even a few unaided steps and out come the stones.  I personally don't buy into any of that,  but I do know what it is to be judged by someone who doesn't know ANYTHING about my disability.  It is hard to know how to react to public ignorance because the loudest voice is often mistaken for that of authority.
Early days spent in front of mirrors, it was hard to both see the lines and forms my body was creating without getting caught up and distracted by the minutia all humans see in themselves as "flaws".  I dance with graceful, dynamic and athletic partners, but not one who didn't have some obsession with parts of themselves their "didn't like".   Everyone has something they WISH they  could do, and see others do it so well.  One might be able to hold a relev'e longer, or do a spin longer or a jump higher, and we both hanker and applaud each other's abilities.
In a physically integrated company, adaption works on all fronts.  Not only is each "wheelie" dancer working within the abilities of their own body, but also the capabilities of their AB partner.  In an occupation where uniformity in execution and body type is so often the norm, part of the art in the work I am involved in is the nuances in the acclimation of  our bodies and our movement.   We push ourselves, reach further, try anything.  Like in life, it is a balance to work within the real limits of physics and the true nature of the human desire to push beyond them.  The result of such sagacity and poise, I think, is a most sure footed way to move.

Long time no update, I know.  Yeah, my third pro year has been crazy busy.  We have a new AB, have added more pieces to last year's choreography, and the challenges have mounted with a busier schedule. All in all, it's been awesome and free time has been devoted to PT and sleep.  However, I've had this thought on my brain for a long while so there it is.
paidiraiompair: (Can do)
 Over the last many years I have struggled with physical challenges. I and a few friends like me, have come to call ourselves “Border Gimps”, especially since society not only loves to have a name for things, but also to help sort through the current “P.C. phrase of the month”. Now I know there are as many thoughts on that sort of thing as there are people to think them, but here is how I and mine define it.


Border Gimps usually have some capacity to stand, likely even to walk, in one mode or another. Our bodies are usually all intact, just not 100% functional. Our issues are usually more related to the pain surrounding mobility in general. We go to doctors when the problems begin. This is often a long, multi-layered journey, at the end of which modern medicine provides little to no solutions for us. We usually have a mixed status officially, as in we probably won’t qualify for any sort of governmental disability assistance, but most of us have tags, called “rock star” or “princess” parking passes, for our cars. Some days, we might appear completely “normal”; others, our young or middle-aged bodies betray us into the stance of the very elderly. Likely, we have no control or way to predict what “status” any given day will bring. We spend our days on the border between “capable” and “handicapped”.


When you are a border gimp, one of the first things you’ll realize is that you are never enough of any one thing to please anyone. You can walk, perhaps with a decisive limp, but you CAN do it, appeasing those who are concerned that you will need special accommodations. When you walk, pain is always apart of the decision so you get really good at hiding it, a relief to those who are made uncomfortable from your mere presence. You find convenient excuses not to travel so long or so far. You learn to always have everything at hand. When you do move, you do so slowly and carefully, holding your body as firm and as erect as you can. You keep close to walls and other stable objects to catch an unexpected fault in your stride. You smile a lot, so folks don’t look too closely at the unavoidable catch of breath or flinch of pain. You’re clumsy but less an obstacle than in your chair. The chair gives you mobility but the world limits where you can go. First outings in chairs demonstrate just how “handicap accessible” the world and people around you, really are not.

Folks either can’t look away from you, or refuse to see you at all. Your very presence makes them uncomfortable. They don’t know how to act, so they either fall over themselves (and you) to “do” for you, or sprint and dash to get away from you. Either way, they wish you had just stayed at home.

People always want to know when you’ll “be better”. Why were you able to “walk” with a cane yesterday, but are in your chair today? They think to themselves, “There is NOTHING in this world that would put me in a wheelchair; I’d go down swinging.” They secretly think you are a pretender to the handicap world. You must be in it only for the “attention”.

There are medications to ease the pain, but even they are a double-edged sword. If you take them, you are “better”, in that you are more mobile, less “gimpy”, and easier to be around. You are also judged as an “addict”. You are weak for not just “powering” through your pain with guts and guile. Surely exercise, meditation, biofeedback, yoga, acupuncture, prayer, crystals, and determination can overcome any hurt better than “drugs”. There is the perpetual “have you tried….?” Everyone knows someone who has just what you have and tried whatever he or she is suggesting, and since it worked for them, it must be the cure. If you are relying on pills, then you have “given up”.

Border gimps know that we HAVE, in fact, tried it all. We have allowed doctors and healers to poke, prod, prescribe, inject, inspect, and x-ray and MRI us to the very limits of our ability to withstand physically and our ability to pay financially. But whatever our reasons, (and they can be complex and varied), there comes a moment when we are face to face with a physician who eventually throws up his or her hands and says “there is NOTHING I can do.” We have to accept that even “modern medicine” can’t fix everything, and it cannot fix us.

It is usually at this point that one of two things happens on the medical front. One, the doctor decides that since there is no “treatment that will lead to a cure”, he or she is done with you. That’s the dreaded diagnosis of MMI, Maximum Medical Improvement. Even if you are still “broken” you are expected to be resigned to your fate. Yes, your pain, your symptoms are still ever-present, but since there is no prize of making you better, the doctor shows you the door. You are left to “just deal with it” for the rest of your life. One doctor, who by the way, had admittedly NEVER laid eyes on me, told me that I could “walk enough”. Another told me, that though there were “abnormalities” in both MRI and x-rays, what I had wasn't, in his opinion, “significant”. He was once a physician for a major league football team, and THEY played hardball all the time with “real” problems. Life sucks; get a helmet.

The second thing that happens is that they turn on you. Since they cannot figure out the “why” of your affliction, then there is nothing wrong with you. You are lying. You are exaggerating your plight. You are an attention seeking, drug-addict who is a weak, lazy, mentally unstable drama queen. No, they are not going to “treat” you anymore, because there is no “treatment” you responded to. You ask what to do, and as one doctor said to me, “Well, just stop it”. Stop using a cane, stop walking with a limp, STOP being a whining pansy and just “pull yourself together”.

It is about at this point that most border gimps buy into this crap. It is one of the stages of grief; denial. We are not only in mourning for our lose mobility, but are told the lost is all in our heads. So many of us has given in to the doctor’s logic and said, “Well, I am all better now”. Even with or without pain medications, we push our bodies to the breaking point to prove to ourselves that we were just being weak and silly. During this time, we power through each day in mind-robbing agony. We swim the river of denial. Our overtly brave happy faces turning on a dime to “unexplainable” tears mixed with random rage. We do more than “seize a day”; we wrestle it to the ground, punishing ourselves with pain in frustration that our will alone cannot conquer our condition. We give ourselves no mercy, because no one “believes” us. They say what we feel isn’t real. We do this until our bodies give out. One day, there is no mental will or physical strength to get out of bed. We sink into a depression, hitting a wall without socially viable choices.

This is when the border gimps find they cannot physically live the “lifestyle” of a full time bi-ped. We want a life that is as rich and diverse and yes, even as free of pain, as anyone else. The smart ones begin to be their own advocate. If they are lucky, they have support of loved ones who will stick up for their right to make their own decisions about what sort of life they want. The very determined stick to their guns until they find a doctor who is more interested in helping them achieve that goal than “fixing” them. We want to STOP being patients and get on with whatever we were doing before we “starting going gimp”. But those of us on the border have to first buck up to one major fact. There will ALWAYS be people who are going to disagree (sometimes loudly and obnoxiously) and criticize our choices. We must, unfortunately, come to terms that those people who do not know us, do not know our struggle, and do not know our bodies can go straight to Hell.

There will be prices to pay for this force of independence. If we make concessions to our bodies, be that a cane, a walker, a chair, we are exhausted by having to “justify” our daily choices. We have the ABILITY to walk, no matter what else is involved, so why are we drawing attention to ourselves and inconveniencing everyone around us. If we educate ourselves and conclude that pain medications in some combination remove some of the hurt and enhance for our own decided quality of life, again we are judged. Anything must be better than living “dependent” on “drugs,” say people who have never lived day after month after year with constant, unfix-able hurt. Who wouldn't wish to live a life in which the daily choice isn’t “pain or brain”? The fact is, time factored by education and experience gives one the right to make choices for oneself. If others think they “know better”, there is no way to change their minds.

Sometimes worse are the “well wishers” those who can’t help but “bless us” as if we were dying victims. They tweak their voices into the same high pitch tones one uses for simpletons and small babies. I have a blind friend who laughs when people speak “clear and slow” for her to better understand them. We will often suffer as politely as we can through their easing of their souls to tell us we are “so brave”, “a trooper,” or the worst of all, “an inspiration”. We know they think they are being kind, but they do not know that all we really want is to go about each day just like everyone else. Good days and bad.

In my own life, I often attempt to cut these nice folks off with humor. It is how I have always lived, finding as much laughter in this crazy existence as I can. Yes, it IS a mask sometimes, but one that many use without malice. I smile as they fumble with which PC term I might be comfortable with, and then I let them off the hook. “I am a gimp, you are a bi-ped. You annoy the shit out of us,” I add, with the same silly tone of a good Southern “bless your heart”. They can’t help it, so I try to move along.

Border gimps, however, are often those with “invisible disabilities” on good days. Please know, we do understand and appreciate what our bodies ARE still able to do. We have choices that others do not. We are wheelchair users, not confined to a chair, and we know the difference. (BTW, lots of gimps of any stripe HATE the phrase, “confined to a wheelchair” so all you bi-peds make note NOT to use it). Yes, for some of us, we must face that eventually those choices will become more and more limited, as many of us have degenerative problems that will only become worse with time. Yet all of us only want to have the best quality of life, which is what all humans strive for, or I optimistically hope they do.

Life is a struggle, and all of us have our own “box of rocks” to tote around. We like to give names, labels, to the weight of those stones, so we can identify them when we see one. It has taken me a long decade to come to understand all the names I carry. So all these words are written just to be a voice for those like me. If you read some truth from your experience, then know, “I am a Border Gimp too, and we are not alone”.

paidiraiompair: (keep calm)
 An open letter to Amy Purdy and the cast and crew of Dancing with the Stars 
Dear Amy, 
First, I think you are amazing.
That said, I'd like to put before you a thought about a way you can REALLY help the disability community. PLEASE, stop allowing the folks on DWTS (I'm a big fan BTW) from CONSTANTLY calling you "inspirational". Folks with disabilities are sick and tired of being the focus of making the able bodied feel better by being their "inspiration". If you don't believe me, ask in the many communities peopled by the disabled and you will come to understand that you are in a rare and gift of an opportunity to use your participation to make a point. "Judge my dancing, judge my ability but STOP STOP STOP belittling all of that with the "I" word." (It is noted that Glen is less guilty of this so far and it's appreciated) 
It really matters, Amy, and it IS being taken note by your contemporaries. I was taking part is a conference today called "Nothing About Us, Without Us" and how the over use of the word was ruining the chance to educate the public about treating all of us in an truly EQUAL format. You are an athlete in the para Olympic games, and you would never accept the judges using anything other than your ability to measure your success. 
Please Amy, you really can do a wonderful thing with your wit (loved you on Jimmy K) and charm to educated the public. Ask the DWTS cast and crew to STOP using the word inspirational. We of the community ARE watching and hoping that THIS opportunity will not be allowed to slip away.  Thank you for listening. 
paidiraiompair: (dancin' in lot)
 I found this online and is the spirit of sharing how dance makes everything better, I share with you the new "exercise craze"  So pick your favorite guilty pleasure song and dance like no one is watching.  


Mar. 1st, 2014 05:04 pm
paidiraiompair: (hippie gimp)
My time in the dancing world has demonstrated to me that dancers in general all have different styles of learning choreography  Some are "counters" and use the number beats to train the body into the series of moves in a piece, layering the music in afterwards.  Others seem to do the opposite, using the musical cues to frame the movement, using numbered beats to be synchronize with the other dancers.  Still there are some who just seem to see the moves once and it becomes almost instantly embedded into their bodies. Then there are folks like me, who have to repeat the movement over and over again to learn the dance  My poor brain seems to have a layering process where it goes from the broad sense of the movement, firmly anchored to counts where repetition slowly (sometimes VERY slowly) adds all the extra finesses in each phrase.  Then the counts seems to fade as the music itself takes over as cues.  This is when I know I GOT it,  When I start to feel the freedom of my work.  When the performance becomes joy.

This week was my "secret challenge" as I had to let go all these regular methods of doing things.  The pace of the time from choreographing the piece to performance was so very different, I thought I'd never be able to do it.  Seriously this was a week of high panic in my mind as I fought my anxiety to want to do things the way I was more comfortable in body.  It was a week of trust as well.  Trust in my fellow dancers, choreographers and myself.  A friend said, "If the director didn't think you could do it, he wouldn't have you up there.  I wasn't sure in my heart, but I took the challenge.  Last night was the proof in the pudding and I have to say, so truly humble, that I was proud of the work.  So much so, that I share with you our performance at Temple Kehillat Chaim for Disability Awareness Month. 
Click the picture to see the FB Video
(I apologize to those who don't do FB, but the evil can not be helped)


                        last rehearsal before the show....................

paidiraiompair: (alligator)
I hit the ground running, as it were, not only prepping for the "big show" the company does each January here in Atlanta, but also incorporating three guest artist (two from "out of town") and working with a new dance partner.  I learned recently he wouldn't be returning for a good while, so to kick off a new year and more post writing, I wanted to share this video of some of the "off camera" moments he and I shared.  Luv U Kyle!

paidiraiompair: (arty chair)

One night I was riding with a friend downtown to a new club.  The old club location had closed and I was telling him how much I was going to miss it.  Once you navigated past the completely inaccessible front door, which I could do with the help of a cane and the strong arm of my date, that location was a dream of accessibility.  All the floors were hard, with not a carpet to be seen!  There were no stairs, only ramps. The ENTIRE bathroom was wide, not just the handicap stall.  Even the mirrors were low enough so that you could actually check your makeup.  It was a place I could dance, REALLY dance!  

I had never heard of the new club we were going to, but it's the new location my monthly dance night peeps had selected, and I wanted to go to support the troops. Upon arrival, we managed a parking space right out front of the club -- often a good omen.  My friend got out of the car to scope out the landscape, meaning finding out where (and if) the handicap accessibility would begin.  The "afterthought" construction of the door we were guided to made me laugh.  Imagine if you will, that just off the sidewalk there is a 2-inch high micro curb below a foot of actual ramp that's only about a foot and a half wide.  At the top of this "ramp" there was another 2 inch micro curb, and then a decorative wood pillar in the middle of the door.  So if one could somehow navigate the micro curbs to get to the "accessible entrance", one can't be more than 20 inches wide to pass through the door.  Again, I was fortunate to have my cane and the two strong arms, but my heart began to sink.

When I entered I was greeted at the door by the host, who is a friend of mine.  I slowly, and with all the politeness I have, navigated through the crowd to see that all the tables are the 4-foot high kind, complete with 3-foot high chairs.  So my friend helped me up into the chair, and we parked my wheels underneath the table.  

Now, I want to say that for the rest of the evening I had a good time.  I talked with friends, enjoyed a REAL Long Island iced tea, and thought that the decor and atmosphere were lovely. But the general experience of marginal access was typical of the events I'm invited to.  As I explained to my friend on the ride home, it's not that I think the organizers are being intentionally non inclusive. It’s just they suffer from the same problem that most of our society does, in which accessibility is an afterthought.  

I wrestle sometimes with how much I should say. I don't mean to be a bad sport.  And as any gimp will tell you, we are so very often accused of wanting special treatment.  It irks me, though, that simply wanting, no, needing a place to be accessible is considered “special treatment.” And we fear that if we make a big deal out of it, maybe we won't be asked to other events.  I currently still have the ability to be adaptive, yet I know that won't always be the case.  

When I'm out for a night on the town, I really would like to leave my advocate hat at home.  It so often clashes with my outfit. So I've been looking for a middle ground, maybe try writing some sort of letter to the organizers after the fact, to be used for the future.  Yet I'm still not sure how to begin.

Atlanta is filled with wonderful old historic buildings and businesses.  It's one of the things I love about the city.  As much as I hate the dreaded lifts, to preserve the buildings integrity, I know that sometimes you have to get in the lift!  I've lived in the city all of my life, and am blessed with many friends who never think twice about making sure that wherever we go, I can go too.  But when I am going to a new event by myself, there have been many times when as soon as I get there, I turn around and go home.  Sometimes it’s because I can't get into the building at all. Sometimes it’s just a day when my courage fails me, and I don't have it in me to be attracting unwanted attention, pity, or bubbling over with outrage over the lack of accessible design.  My friend was surprised that that happens so often, and I said, "It's because we don't talk about it."  I didn't add, "and I'm afraid folks won't want me around if I complain."  It happens. Even when I’m just inquiring about accessibility prior to going to an event/class, and I’m NEVER contacted back. (Panic over not wishing to bring up the issue can do that.)  

So how do you say to the organizers of such wonderful events, "I would love to go!  But I know that location or that activity won’t be accessible to me."  Maybe I'm wrong, but it goes against my southern girl politeness to say "If I go, will the group make sure that I will not be left behind, or put off in a corner?"  Because sometimes in these old buildings, a wheelchairs lucky to get through the door at all, and getting all the way into the actual space isn't an option.  

Am I being a princess?  Am I being a baby?  Am I being a burden?

See, I don't want to be any of those things.  I don't want anyone to be responsible for the emotional turmoil that being a "border gimp" brings me in those kind of social situations.  For that matter, most gimps don't want to be put in that position at all.  I'm not looking for pity, I'm just unsure on how to proceed.  And by that I mean, how to proceed in a way that is comfortable for ME, and not necessarily what another person thinks I might should do.  Not all of us are comfortable ALL THE TIME to speak up or out in EVERY situation.  It shouldn't make us cowards if we'd like to NOT jump up on a soap box every time one appears.   So I'm working on it.  And I share these words with you, in the hopes that it will spark not a debate, but LISTENING.  This is how I feel: even when I shouldn't, or "that wasn't what was meant" or I wish I'd stayed at home,

I'm not going to stay at home, that's just not me.  I just have to think it through
paidiraiompair: (dance warm up)
"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

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