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.
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”.
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
Each fall I do a write up on my "best time" of the year, DRAGON CON. So before I take you "back to the floor" for the 2013 season, I'd like to combine some thoughts for your consideration and hopefully generosity as well .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.
**short for "costume play", is an activity in which participants wear costumes of a specific character or idea from a work of media entertainment/fiction
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