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
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.
Unlike dancing in a club or otherwise for oneself, dancing as performance is what Gabrielle Roth once called the “Light of controlled Chaos”. When rehearsals transition into nonstop run throughs, the task is to get every movement exactly correct, all the while making it feel fresh and look spontaneous. However, it is surely then that things go awry. Roth also said, “Chaos has a shadow side, when it is not grounded. And that is just a panic”. Not really “stage fright” it is the added energy that makes dance going toward performance start to “feel different”. Making mistakes you've never done before, turning ways you can’t image, forgetting moves you done a hundred times. The only thing to do is breathe, turn nervousness into excitement, finding the balance, hopefully, before opening night. Prayer, lucky charms and kind words can go a long way towards that end.
Now in the week our director has given us off, I, for one, am using the time to catch up on my everyday tasks and much needed sleep. The knot on my noggin all but gone, my feared broken toes are still black across the ridge, but only bruised. I find I am getting antsy, ready to create again, eager for that wonderful “controlled chaos” that turns learned patterns into art, and simple counts into music of movement and life.
It’s been a week since I took off for one of my favorite times of year: DragonCon. Once, only a time to earn extra bucks working the dealers’ room, being a roadie for the band, or acting as escort and “My Girl Friday” to the likes of DeAnna Troi or the chick from “MythBusters, it has since morphed into a combination college class reunion and vital away time from “mom” duties. Sure I still bartend a bit or watch a booth from time to time, but after 26 years, it is mostly this girl’s time to R &R.
Time to let my hair down, literally. Being in rehearsal, dance class and the gym so much, my hair pretty much lives piled on top of my head. Con is the place to nurture my inner “pretty girl” with fancy dress, make up and real hair styles. It is also the season for dancing; club style, Irish gig, slow couple sway. I’d been shy to show my moves outside the Company, plush carpets and crowds with unguarded toes made it difficult to be inconspicuous on the dance floor. . I had already wasted the first night on the sidelines, nursing the old feelings of lost. However, my apprenticeship had taught me control in small spaces and built muscle in my arms to cope with tough terrain The music called to my heart, wine and friends made my bold. I took a deep breath, and spun out to the middle of it all.
I ignored the shocked looks and cell phones capturing what to them was an unusual sight. I focused on the beat, the smile of my partner, the feel of the floor. Soon the karaoke singers drew the focus, and I relaxed. The following night, at the Mechanical Masquerade, dressed in our steampunk finery, I danced alone, swung between two handsome men, and even the “time warp” with my gang. Resting between sets, well wishers whisked away by my entourage as their admiration was about to turn “inspirational”, I looked back out at the crowd. Ok, so now, “Dances with Wheels” might be a novelty, but repetition can breed acceptance, or at least a level of mutual comfort. That’s a good thing, cause I got my dancin’ shoes back on, high heeled and wheels pumped. My place on the bench is gonna be empty, and who knows, next year I hope to be joined by others who, not matter what life dishes out, are gonna dance anyway.