Showing posts with label independence. Show all posts

For much of my life you've been like a second shadow: your presence waxing and waning with the rising and setting sun, cheering me on during my brightest days and slinking away during darker moments. Despite this closeness that we've shared over the years, I have not the faintest idea of what you actually look like!
You were there when I learned to dress myself, there when I learned my first transfer from toilet to wheelchair, you fist-pumped when I got my college diploma, and don't think I didn't see your eye rolling smirk when high school was finally over. My doctors told me you were there when I walked with crutches, when I learned to swim, and when I learned to lipread. Mom and dad told me you were there during IEP meetings, every time I pointed to where it hurts, or the times they fretted sleeplessly because you were taking me away from their nest. Some people say that you're what "doing something on your own" looks like. Others will say that you're the feeling of freedom, of acting upon autonomy, and you're the sounds of millions when they scream for the toppling of a dictator.

Although there's a lot about you I don't know, I wanted to take some time to share with you the things I have learned from you. Because while you think you have been able to lead me on with your tough-love mind games, and your unsympathetic spirit - don't think I'm just some mindless puppet of yours. I might be your marionette but we're both tugging on those strings, one snip from either of us and the whole thing becomes a dysfunctional clump of wood.

Independence, do you remember the first time we met? The first time I heard your name? Let me remind you now:
I don't remember if it was second, third, or fourth grade but it was during one of those years. Our teacher had just turned us loose into the hallway, it was snack time and sneakers squeaked against the linoleum hallway floor. It was back in the day when sneakers that lit-up were the "in thing," and I can picture those lights flashing in rapid Morse code: hungry young child! In the hallway I looked around for my classroom aide who seemed to be nowhere in sight. Maybe she had gone to the bathroom, maybe she had gone to get her own snack, I stayed quiet and watched as my friends opened and slammed metal locker doors - the laminated name tags on each one seemed to be succumbing to gravity as the school year went by.
In front of our lockers was a half inch ledge that jutted out about two or three inches. I'm not sure why there was a ledge in front our lockers, but it was there and for that reason I was unable to roll up to my locker and get my lunchbox that my aide had put on the top shelf of my locker. I reached to open my locker and saw that the strap of my yellow and blue Pocahontas lunchbox was hanging down, I leaned forward in my wheelchair and grasped at empty air - only an inch away from the strap. No one else was in the hallway and everyone had gone back into the classroom to swap Doritos and Cheeze-its; not thinking anything of it I went back to my desk and reached for the ruler that sat in my basket of supplies. I took the ruler back out into the hallway, stuck it through the loop of my hanging lunchbox strap and yanked forward - the lunchbox came flying out and I caught the plastic in my hands. I stuck the lunchbox on the footrest between my feet and rolled back in, wondering if mom had remembered to pack me the right flavored juice box this time.
"Sandy! You got your lunchbox by yourself?! You're becoming more independent each day! Next time, you know, you can always ask one of your friends to help too." 

When I first heard your name the skies didn't open with angels singing from the heavens. No, when I first heard your name - on that day - I heard about the latest kid's show on Nickelodeon, and then the bell rang for recess. When I first heard your name it was just another regular day in the life of yours truly, it was just the start of millions of more natural moments with you.

Sometimes you are my goal, and other times you are my motivation. Your ability to shift gears is uncanny as I've watched you morph from learning to charge my wheelchair, to going to doctor's appointments on my own. You taught me to recognize that feeling that means: you want something really badly - so stop making excuses and go for it! During those times I have imagined you as the barking coach on the sidelines, the whistle clenched between lips shrill and piercing as it shrieks: try harder, you can do better. Don't listen to them. Only listen to me! I'm the one that's loudest in your head! 
You haven't been easy to get along with. You've caused pain and heartbreak, but when I close my eyes and I ask myself: do I feel more like a whole person? And when the answer is a resounding yes, no matter the consequences of my actions and the tensions I have caused - I know that I have done the right thing, for myself.
That... more than anything else, Independence, is what you have taught me best: the ability to care for myself. To put myself first. To recognize my own needs. To not shy away from the difference in the way I do some things. To pursue that huge goal of studying away for a semester in college, to the tiniest goal of learning how to shove my sneakers onto leg braces - you have taught me to have stamina for myself, for no other reason than because you tell me I deserve this.

Thank you for giving me only the best.
Independently forever yours,
Sandy

Barrier Breaking Tip: Your obstacles can only be as big as you choose to see them. Bite sized pieces are easier to swallow than the whole chunk. Hurdle over a small wall first, then begin your barrier breaking streak from there!

• Monday: Make it a habit of treating yourself the way you'd like to be treated. People will take note.
• Tuesday: Lessons learned from swim class - Feeling a lil bit nekkid!
• Wednesday: What are some ridiculous responses you've given? Laughter does the soul good 
• Thursday: Asking for help isn't one of my strengths. Here's how I plan on being better at it. 
• FractureFreeFriday: How do you keep above the day-to-day struggles? 

The high school cafeteria swarmed with new and unfamiliar faces. Teachers milled about but only for the sake of being there because everyone knows that this is the place where every teenager is for him or herself. As a 9th grader I was a new student, but I was totally new - my family had just moved into town during the summer between 8th and 9th grade, I knew no one and more importantly no one really knew me.

I'm that person who gets visibly frustrated when my internet is being slow and a site is taking for-ev-er to load. Time and the ease in which we are able to do things these days is astounding; every parent of the 20somethings in my generation is quick to tell us a "back when I was your age.." quip, but it wasn't until recently that I realized the progress that has come over time on a more personal level.

One of the projects that I'm lucky to be working on involves research on the disability rights movement. Through interviews of those involved, reading articles, and collecting old newspaper clippings from the late 70's - I've been tracking a small piece of the disability advocacy work that went on in the state of MA. My research has led me to when that universal 'wheelchair' sign was first being introduced; I have newspaper clippings of when the words "...Society for Crippled Children..." were acceptably emblazoned across headlines; I have interviewed people who remember the days when buses were not accessible, or the days when there were no curb cuts -- anywhere!
During the interviews as I'm listening to people tell me what it was like "way back then.." I am almost ashamed by how willingly I've just assumed "well of course I should be able to do that!" Or "...obviously that's accessible, I mean why wouldn't it be?" And "Of course I can take public transportation, d'uh!" Not realizing that all of those things I take for granted were once non-existent and are now the product of an entire community who fought for a literal level playing field.

One of the individuals I interviewed is actively involved in public transportation access for Boston. During the interview he was telling me about a time when public buses were not accessible, and even further that the Greyhound (and other coach) buses did not become accessible until 1993. Immediately I had a flashback to four years ago when I stubbornly "ran away" from home to attend a semester away in D.C. I remember buying my one-way Greyhound bus ticket one night and the next day, to my family's dismay, boarded the bus and never looked back. There were a number of hurdles and personal barriers in that process of participating in a study-away program in the nation's capitol; but never once did I think to myself I can't go because it won't be accessible. As I listened to the guy tell me about the marches, protests, and demands that the disabled community worked for to get to the point where I was able to pursue my own independence -- I became extremely humbled by the movement's work and progress since the early 70's.

I now have greater respect for the components that go into my own goals of independence, but each decision and step I make towards that goal is now put into perspective for me: access is not just about getting in the building right here and now; access is also about setting the standards for future generations, so that those 20-something kids like myself can now go about our days zooming from point A to point B with the mindset of "of course I can do that!"

Maybe it was around the time I started jumping, skipping, and running in my walker that my physical therapist decided to switch to crutches. Mind you it wasn't the kind of crutches that dig a deeper pit beneath your arms but the kind you slip your wrists through, and then grip. I'd had my red walker since I was in Kindergarten till the fifth grade, and very rarely did the arm rests need adjusting (maybe once every 3-4 years?). My red walker was like my own mini-fort of safety, confidence, and independence. There were four prongs, the front two were wheels and the rear prongs had rubber stoppers. There was a front piece to it that served to connect everything together, and in my mind also served to stop me from falling over or from otherwise getting hurt. I used to turn around and sit on that front piece (even though it wasn't really a seat, and even though my P.T. said it wasn't safe). I could put my entire weight on that walker! I was able to lift it just enough off the ground to be able to turn corners, or even do a full 360 turn-around. Suffice to say I felt safe in that walker, it was with that piece of equipment that I learned to take my first independent steps in.
So when all of the safety, comfort, and security was stripped away from me I got nervous. Immediately the first thing I noticed while wobbling in my crutches was: there is nothing in front of me. My face could see the immediate floor in front of me. I then noticed how much of my weight I had distributed throughout my forearms with the walker. In crutches all of my weight seemed to be leaning on to two metal extensions, resting on rubber stoppers that were never completely flat on the ground - but instead always at an odd tilt, this made me nervous. What if it slipped? All I could see in my head was the replay of me face planting onto the pavement, crutches flying with arms and legs pointed in every which direction - kind of like a cartoon dog slipping about on ice skates.What if I forgot which I was supposed to move first - my leg or my arm? With the walker everything seemed so basic, so intuitive, it seemed like I had to relearn and reteach my body how to walk again. Had I really taken steps towards my independence? Or was I now just re-inventing the wheel?

"Okay, so which do you want to use today?" My middle school physical therapist had both my red walker and my new silver crutches in front of me. Without hesitation I pointed at my red walker.
"Well let's do some walking with your crutches first okay? And then we can play soccer in your walker, does that sound good?" 
"Fiiiine-uhhh" I grumbled.
Slowly and with a lot of patience from my physical therapist my body became used to the crutches. I found that I was able to stand with a lot more ease, move quicker, and suddenly my movement seemed to flow a lot more naturally. I was no longer pushing and jerking myself forward. Everything seemed so intuitive after a few weeks: I knew just how much to put my crutch forward without over-extending myself, I could match where my foot stepped to with where my crutch was, I understood the cross-rotating pattern of left-right-left-right-crutch-foot-crutch-foot. The weight on the palm of my hands where I gripped loosened over time, I was no longer as nervous, I was no longer scared of my new boundary-less independence.

It became clear to me that I became comfortable in my crutches when I used them on my own, at home. I knew that I preferred my crutches when I chose them over my walker when my physical therapist asked. And most of all my crutches soon became a natural part of my school day when I felt comfortable enough to walk with them around my friends at school. I was no longer limiting my use of the crutches when everyone else was in study hall and the pathways were safe for me to exercise in. I'd use them to go to lunch, I used them during P.E. class, and sometimes during the day when I was tired of sitting in my wheelchair.

The decision to switch from a walker to crutches reminded me of how resilient my body is despite its genetic fragility. It still shocks me how adaptable we are and how with practice even the most challenging and daunting experiences can become second nature to all of us.