Showing posts with label manual wheelchair. Show all posts

...Is when I'm not in my wheelchair.

Even though during the day I rarely take conscious note of my chair, it is still something that appears as the tiniest blip on my radar even on my best days. The attention drawn to my chair by others is always there during the day when I'm going about my business. On a usual day I've grown to be able to keep that attention faded to the background; unless someone comes up to me and starts a conversation about it or why I'm in it - the stares and points (on a good day) pretty much are a non-issue and remain as standard as traffic lights that dot the scene of my day-to-day environment. The light changes color and I move along: nothing fascinates me about this interaction, and it's something that I just expect to happen.  We all know it will happen.
But like I said, even on my best days, even on days when the fact that I sit in a wheelchair is something in the background - it is still there in my mind. I can't avoid it and it's not something I have the desire to avoid either, that route just seems pointless anyway I look at it.

Still though, it can be tiring. It's tiring to wait for someone to come help me get un-stuck from a snow bank because the curb cut is not plowed. It's tiring when I sit in this one position all day. It's tiring when finally I think I have a minute to myself when a gaggle of kids on a field trip are all gawking. It's tiring when someone thinks they're being so original with their car-related comment i.e. "you'll get a speeding ticket!" "Has that passed inspection yet, where's your sticker?" "Don't drink and drive!" "Do you have a license for that?" It's tiring to hear about how Sally's grandmother has the same chair as me. All of those things are tiring to deal with which is why usually I don't. My eyes typically glaze over and I nod, and I smile but really I am doing anything but paying attention. I don't really allow myself to think about how annoying the chair is, because I know that it's not the chair's fault. But there is a part of my thinking that says there are too many irritants out there to 'deal with' one by one - and the chair is just one thing... and if only I could change that. But I can't.
The most that I have figured out to do is learning how to not let those irritants get the best of me. I relegate them to the background noise of my day, sometimes with significant effort and other times with as little as a shrug and a smile.

The best that I can explain being out of my wheelchair as being my favorite part of the day... would be to compare it to when I take out my hearing-aids at the end of the day. Some of you might be hearing-aid users and others not so I'll do my best to explain:
Hearing-aids serve to amplify the sounds in your environment. Depending on settings and personal hearing-loss they might be amplifying higher pitches or the tones that might be lower. There are hearing-aids that focus on individual voices, those that can block out the background noise of a heater or a classroom fan - but still, these noises are amplified to the wearer.
For me when I first take out my hearing-aids there is this immediate vacuum of silence that rushes into my ear canals. And it is the most relaxing noise for me, even more so than the sleep machine app on my ipad that makes waterfall sounds. That shush of every sound in my environment creates a stillness to the end of my day that I appreciate (particularly after stressful and busy days!)
What I'm experiencing when I take out my hearing-aids for those few seconds or minutes is an adjustment period. My ears have just been pummeled with amplified sounds for 9-12 hours of the day and suddenly everything seems muted, it is bliss I tell you! Then my ears will adjust and I will begin to hear my environment again at my usual hearing-loss-level decibels.

But that is what being in my wheelchair during the day is like, and then being out of my wheelchair at the end of the day. During the day my wheelchair amplifies itself to my environment, making it and my differences known to those who have the urge to take note of it however they choose. At the end of the day, when I am out of my wheelchair again, there is a certain silence to the attention it brings - it is in the absence of it. 

1. Seat belts
They are a great thing and I always have mine on unless I'm in a parked position. After too many accidents of falling out, or nearly falling out I have become a paranoid constant seat belt wearer. (The fact that I am always zooming off somewhere means that my seat belt wearing has literally been a life saver.) This also means that I am always looking for where it is! It drops between the wheels and the seat. It becomes tangled in the spokes. It drops in the crevice behind the seat. Somehow it has become wrapped around the metal handlebars. And my hand is always reaching for it in all of the weird spaces, jammed in somewhere that I'm pretty sure the manufacturers never intended for me to cram my fingers into.

2. Jammed fingers
When not in school or at work I use a manual wheelchair. It's easier to get around in places that might not be accessible, and also it collapses easily in friends' cars. Manual wheelchairs are great! And I particularly like when I switch from my power wheelchair to my manual because I feel more.. human in it. I feel less like a robot or a transformer. With that said though there is one gripe I have about a manual chair: because it is something that I push myself in, I frequently have jammed my fingers into the brakes. Usually this is because I haven't fully released the locks yet, or because I'm just not (as usual) paying attention to what I'm doing with myself. But ramming my thumb into the brake mechanism is probably one of my most frequent injuries in a manual wheelchair.

3. When it rains it soaks
People who are not wheelchair users just get their outer-wear wet. They can take off their jackets, their hats, their shoes etc and feel dry within minutes. Wheelchair users however have the joy of sitting in wet cushions, or against the back of the seat as raindrops casually drip down it. Let's not forget the armrests that collect puddles of water, the little pool that is only waiting for my elbow to carelessly rest into. Most of the time I have been lucky to find a bathroom that has automatic hand dryers that I just chill underneath the nozzle for a bit... otherwise it leaves for a very very long day.

4. It's not their arm rest, elbow rest, bag carrier, good-deed-of-the-day etc.
Unless otherwise requested or given permission, none of those things applies to anyone else except for the one in the seat. It has gotten to the point where I have no qualms about moving forward when I know someone is leaning on my chair (and the person didn't ask beforehand.) The other piece of this is that unless requested - do not rush (and assume) the person in the chair needs your help. There are reasons for why wheelchair users are super protective of their mobility devices. Would you want someone rushing to touch your legs and untangle them for you every time you tripped? Probably not. That's a little weird to have random hands all over your limbs. It's the same boundary concept; the faster non-wheelchair users get that line drawn in their minds the less tempting it will be for us to flatten toes at will.


Got others? Leave them in the comments section! 

Clunky and deflated I felt gravity winning this tug-of-war as I seemed to hiccup along. My tire must have looked like the sagging jawline of an aging Muppet: the bottom of the tire jutting out with exaggeration, in stubborn protest of ever feeling filled with energy again. What is usually a smooth ride instantaneously felt as though I was on a creaky ferris wheel seconds from toppling over. I would ascend, jolt, bump, and clamber back down what was in reality only a few inches but what felt like I was experiencing rough turbulence on a transcontinental flight. It must have looked like a bumbling mess, filled with all the awkwardness of a baby taking its first steps without all of the drooling cuteness.

I was that struggle passersby clearly recognized needed help, but no one offered because no one knew how. Honestly, I didn't even know how.

My eyes scanned the brick paths of Harvard Square, searching earnestly for a path with fewer gaps and hungry maws of potholes or unleveled brick determined to gnash my careless tire, never to let it or me go again. The search was in vain as I felt my chair teeter-totter on a precarious point that was being desperately fought over by air and gravity.

I became desperate and began uselessly urging my joystick forward, trying to convey to the little mechanism you're not going fast enough! You don't understand! Come on, worrrrrk betterrrr-er-er! Since physical force was clearly not making a difference I resorted to mental telepathy:
Okay almost back to the dorms now. We're almost there. Just a little further and I can call campus security to pick me up in their van.

If I had been a less stubborn, less proud (?), less adamantly independent, less can-do-this-all-by-myself, and a whole lot less of the I'm-fine-everything-still-works .. I probably would have called a friend - any of whom would have been more than happy to accompany on the journey back to campus. But I didn't.

In my head I could hear my parents' voices fretting "Do you need me to drop off your manual wheelchair? I can come right now!" "Don't fall over! Who is with you? I'm going to call the school nurse." "This is why you need a personal care attendant with you all the time. Just imagine what you would do if you didn't go to school near home!" Of course that only encouraged me to continue plopping along.
Though it took forever and a day to get to the outskirts of campus, the slim area in which the college's vans would venture to pick-up students.. I finally made it. Sometimes the chances we take are irrational and not computed by the probability for injury, disaster, or total failure.

There wasn't really a life-changing, light-shining, earth-shattering point to this post. It was just to say that sometimes I'm willing to risk it and I get lucky. Something tells me there are moments when you do too.

If there were no stairs in the world it'd be a flatter place, but not in the same way Columbus had believed. If there were no stairs in the world the toy slinky would be a whole lot less fun. If there were no stairs in the world Mary Poppins would never have swooshed up or down the banister. If there were no stairs in the world, the great pyramids of Egypt would look staggeringly different.

If there were no stairs would elevators accommodate more? If there were no stairs, would Machu Pichu still be one of the seven wonders of the world? If there were no stairs, would fire escapes look like slides? If there were no stairs would an old house creak as much? If there were no stairs would bleacher seats be different? If there were no stairs, would dollhouses have fire poles instead? If there were no stairs would we all cannon ball into the pool? If there were no stairs would the stepping stool exist? If there were no stairs how would Cinderella lose her glass slipper?

If there were no stairs no one would ever say "go wait by the stairs." If there were no stairs you would never hear "I can take the stairs instead." If there were no stairs kids would never be told "don't try sneaking down those stairs!" If there were no stairs firemen would never say "use the stairs in case of a fire." If there were no stairs trainers would never say "sweat it out on the stair master." If there were no stairs fewer would say "sorry, it's inaccessible." If there were no stairs maybe fewer would say "oh I'm so out of breath!"  

If there were no stairs more people would know the thrill of racing down ramps. If there were no stairs more people would think about fewer accommodations. If there were no stairs, people might all enter and exit through the same doors. If there were no stairs universal access might be a little more universal.  

If there were no stairs I'd do a whole lot less problem-solving. If there were no stairs I wouldn't be carried around as much. If there were no stairs I might say "I can't.." less. If there were no stairs I could crash more house parties. If there were no stairs I wouldn't shop on-line as much. If there were no stairs my voice might not carry up the stairwell the same way. If there were no stairs I might not be as alone in a stuck elevator. If there were no stairs,

The world would be a less interesting place, and I'm a sucker for interesting.