All they saw was the crying wheelchair in the "accessible" space on the train.
Accessibility isn't one size fits all.
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:
*The writer acknowledges those words in italics as inspired by those of the blog's post followers, and gratitude for their honesty.
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. https://www.fullradiusdance.org
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