Showing posts with label independence living. Show all posts

My friend K recently got her learner's permit! We are all so excited ...and slightly terrified... as she makes the moves towards further independence. Read her account of how she came to this decision and her motivation to pursue this freedom. 
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Why did I get my permit? Why did I take the first real step towards, what is possibly, the most dangerous mode of independence I could take on? I mean, especially for me with the fragility and all! Jeez, can you parents imagine what my parents are going through? Unfortunately for all of you parents, including my own, who would jump at the first chance to delay their precious cargo from getting behind the wheel, are going to literally have to take a backseat, to my future. 

For me driving me was never in the realm of reasonable options until I was 18, when I attended my first OIF Conference. At this conference, I attended a workshop specifically geared toward driving and the accommodations that were already out there ready for our eager use. Albeit, these accommodations are not always the easiest to obtain (as I’m seeing now, 6 years later). I am pleased to say that it is possible, and I have no doubt in my mind that I will drive someday, hopefully soon! All 3 feet and 7 inches of me, along with my 300 lb chair will be behind that wheel, threatening as many lives as those four wheels will allow us. Yikes!

For now, I am the proud holder of a learners permit. This is literally the key to the safe. With this tiny slip of paper, that I received after answering 18 randomly given questions, I now have the power to get behind the wheel of any vehicle, provided there is an over 21 year old passenger who has had their license for a year or more. Oh yeah, and there is the small necessity of there being the proper adaptive equipment installed in the vehicle... so that I can physically manipulate the car and make it safely do what I want. Here lies the problem for many of my physically disabled friends and I which separates us from our able-bodied permit holding peers: 
Take for instance my two younger siblings. Both able-bodied, both came of age and immediately obtained their permits, driving themselves away from the Registry of Motor Vehicles where they took that simple test. They then completed their respective time behind the wheel with a licensed driver in the car, and eventually took and passed their licensure road tests.
In my particular case, I’m going through an agency who will hopefully help me finance the the expensive equipment and modifications that I will need to gain my full driving independence. This also involves being taught to drive while using the specific equipment I’m going to need, which also is going to take time because believe it or not their aren’t that many experts in adapted driving... at least in my state.

But still, why am I going through all this? I ask myself this question all the time. I often think, why drive when you want to live in the city, where you have no problem using public transportation? Also, as much as I don’t like to admit it, I am scared of driving. It's no secret that a simple fender-bender could mean a nice long hospital stay for me.... Despite all of this, there is something bigger that keeps pushing me along: my freedom. I think this is where the motivation towards the ability to drive becomes universal:
Disabled and able-bodied alike know being able to drive to and from somewhere is one of the most freeing things in the world! I have experienced this in limited capacity while using fixed public transportation. Even though there are only so many places I can go via these routes, knowing I have full control over when I arrive and for how long I stay is one of the greatest feelings I have ever known. After a lifetime of living by other peoples schedules though, it is truly invigorating to be able to create my own. Now imagine the open road, that freedom will be just oh so so sweet.

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