note: this image is of a stepping stone is on the sidewalk near the neighborhood I raised my family
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.
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.
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".
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!
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”.
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.
(I apologize to those who don't do FB, but the evil can not be helped)
THANK YOU FOR SHARING THE VIDEO AND A LOVELY EVENING TO Rabbi Harvey Winokur
last rehearsal before the show....................
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
This month, Atlanta was host to the 27th Annual Dragon Con, an event I have attended every year. This time round I was asked to participate in a documentary about cosplay** and disabilities, with a focus on DC characters. As I was posing for some shots as “Bat Girl aka “Oracle”, a few on lookers asked “is the chair PART of your costume?” Since the character is written as a wheel chair user, I understood their query. However, when I was in other costumes, from Trekkie to steampunk, I was asked the SAME question. In reality this line of thought isn’t anything new.
It surprises folks that the TOP query we get at Full Radius is, “do they REALLY need those wheel chairs?” It is even put to us in the form of “why did you CHOOSE wheel chairs as part of the vision of this choreography?”, as if they were props. During our last school tour, when Douglas thought to begin the proceedings with the answer “Yes, these dancers REALLY need their chairs”, it still cropped up in one form or another. I think children respond to their natural keen sense of observation, picking up quickly who can leave their chair to sit on the floor, do a hand stand, move a foot. Perhaps they are thinking “if they can do THOSE things, then the chair surely isn’t a “necessity”.
However kids aren’t the only ones who question something that opens their minds to the possibility that what they perceive and what is actually possible might not be the same thing. Ten years ago when I was just an audience member, I greatly respected Mr. Scotts version of “able blindness”. He saw each body as “perfect, with the potential for undiscovered movement and you could tell it fed his work. That ALL bodies not only COULD experience dance, but under his direction that WOULD. Part of the artistic vision of FRD is that we are all dancers first. Some of us may not have the stereotype body shape or physicality that prevails in the forum, but this is what makes our work wonderfully different and challenging for both performers and audience.
We are in the mists of a campaign of giving focusing on the individual. YOUR contribution is needed to be part of the vision, part of the art that is Full Radius Dance. Please consider, in addition to your financial endowment, gift us with your support by spreading the word of WHY you are patron of Atlanta’s own physically integrated dance troupe.
PS for those who asked, My Grandma is still in hospital, but on the mend ~
Sometimes a thing can “work fer ye, or agisnt ye”. I find this to be especially true to my efforts in this post. Inspired by my time this summer in the BlueRidge, life here is often so simple, that it sets the mind a wondering. Here we fall into a rhythm of waking and resting with the sun, spend hours on the porch rather than a TV, and cell phones and other “new fangled devices” rarely get a good signal. A “trip to town” is either a place to get mail, tourist merchants, with a local eatery, or if you want to get real swanky, the nearest Wal-Mart.
It was there my train of thought began as I quietly noticed the local fashions. A tall lady with bright pink patent leather cow boy boots paired with Daisy Dukes and the biggest straw hat I’ve seen in a long while. (If you know my world THAT’S saying something) A lanky teen that was going for “goth”, but lost me in the blonde “big hair”, tied up with a skull ribbon. Then there was the “PJ” family: I don’t mean the current fashion of “pj pants as ok for public” sort of thing, I am talking 4 kids aged 3-10 in their PAJAMAS, as their array of “bed head” furthered the point. They turned the corner to their equally robed (and I mean “with a robe”) Mom, who called out to “Pa”. The dad, however, was in neat suit and tie to rival the best dress Mormon knocking on your door too early on a Saturday morning.
Right there, I realized, much to my chagrin, that *I* was staring. The same sort of behavior that I have heard often vilified on “disability” type forums and chastised myself to otherwise, well mannered adults. (I rarely fault children under 10, but I’ll get to that.) My eyes went immediately forward as I caught one of kids staring back at me. However, as time passed I thought about the idea of “attention”: the kind we draw to ourselves voluntarily and the kind we don’t.
The same folks who “dressed however they want” because (they say) “I don’t care what people think!”, can be the first to give a terse word if an on looker does so too long or with an expression the dress-ee doesn’t like. However, for the person whose outer appearance falls outside the norm NOT by choice, the overt gaze with or without accompanied facial judgment is a very different thing. It is true that some folks just “don’t got no home training”, to use a “mountain-ism”, and are being somewhere between thoughtless to an ass. It’s why good parenting says “don’t stare” without any disqualifiers. There will be things that fall out of our “normal” and will invoke a long second look, as the brain’s way of confirming “did I just see what I THINK I see”. Whether we LIKE it or not, whether it SHOULD be that way or not, there are honest folks who really are NOT around folks with disabilities and beyond doing a “reality check” their kafundled brains can make them do or say some really stupid things. So maybe the real issue is intent.
Young children are fountains of curiosity and, well plain talk. When mine were small and confronted with a “new” thing, I would encourage them to ask POLITELY whatever questions they had. When a child sees my chair, if the parent isn’t busy dragging them away, I say hi to them to let them know “yes, I get around different, but I’m really just a person.” Grandma always said the best way to understand folks is to start by making them comfortable. I take the lead most of time, as a way to defuse the awkward by normalizing the participants.
I personally do this with laughter. I meet their stumbling for whatever “word” they can use without offending me. I say plainly, “It’s easy, you’re bi-peds, we’re gimps: You annoy the sh*t out of us. Let’s move along.” By doing this, I have “just said it”. I’ve pointed to the elephant in the room and named it “Gimpy McGimperston”, with a hat and sparkles for the trunk. Let’s move on.
Bi-peds CAN be taught, and once we aren't such a novelty maybe they’ll stop staring, or recording me on the escalator with their cell phones.