Tuesday, January 20, 2015

Walking Is Overrated: Learn to Love the Wheelchair

I’ve been reading a lot of comments from parents of children with CP lately to the effect of “I’m trying to keep my child from needing mobility aids” or “I’m trying to keep my child out of a wheelchair.” Nothing makes me angrier and sadder than parents trying so hard to keep their child walking independently that they deny their child the use of mobility aids.  Mobility aids are life changing.  I know, because they changed my life for the better.

From the age of three, when I took my first steps without a walker, to the age of twelve, I walked completely independently.  I spent all my elementary school years, as well as two years of high school in a large school spanning six grades, walking independently.  I always had poor balance and tired easily.  I fell often.  The only mobility aid I used was an uncomfortable fold up transport wheelchair that my parents had to push.  I tried to avoid using it whenever possible.

Then, when I was twelve, a childhood friend, who is also disabled, told me I should start using a forearm (also called Lofstrand, elbow, or Canadian) crutch.  She used one and found that it really helped her.  I gave it a shot, and I never went back.  At first, I only used it for long distances.  After two difficult years, I decided to use it in school.  I was terrified what people would think.  I didn’t want questions or pity.  I just wanted to get on with ninth grade and not get squished like a pancake.  I was pleasantly surprised.  There were some questions and comments the first week or two, and after that, my crutch was just accepted as part of me, with a few exceptions.  I used my crutch in school until I graduated high school.

Soon after I started using a crutch, I began thinking seriously about college.  My older sister had just started college, and I was forced to use my transport chair as my parents and I joined her on campus tours.  It slowly dawned on me that there was no way I’d be able to walk around a college campus.  In order to go to college, I would have to get some sort of wheelchair that I could propel myself.  A manual wheelchair was almost immediately ruled out, because even if it was lightweight, I wouldn’t have the arm strength to push it all around a campus.  I needed something portable, because my parents both drove sedans and weren’t willing or able to buy a lift-equipped van.  My physical therapist recommended a mobility scooter, and so, after extensive research, my new 3 wheel scooter from Pride Mobility arrived in my backyard the summer after eleventh grade.

My scooter and I, circa 2009.
[Image description:  Me sitting on my scooter outside.  My scooter has red panels on it and I’m grinning and wearing a yellow “Honk!” t-shirt and a pink and white baseball cap.]

I spent that summer and the following year learning how to drive my scooter, mainly by crashing into things and tipping over.  By the time I started my freshman year of college, I already had an idea of how the scooter was enhancing my life.  Over the next three years, my scooter and I became somewhat of a symbiotic being.  I knew it and its quirks intimately.  It grew and changed as I did, acquiring many dents, scratches and a seatbelt, as well as a cupholder for a short time, before a particularly nasty fall cracked the cupholder in half.  My roommate even gave my scooter a name: “Bob Scootyscootowitz”. 

Without my scooter, I would have never been able to handle college.  It acted somewhat like a second, more functional pair of legs.  I was able to zip from one end of campus to the other and back again several times in one day.  I was able to carry food on my lap and wander around the bookstore or the library during my free time.  On the weekends, my friends and I would walk and roll up Main Street and waste several hours in CVS and Dollar Tree.  Without my scooter, I would have been limited to my dorm and the immediate surrounding area.  My scooter allowed me to be a “normal” college student living on campus.  I feel confident in saying that my scooter played a large part in my graduation, summa cum laude.  If I had been forced to walk to my classes all day, every day, I would have undoubtedly been too fatigued to concentrate and my grades would have suffered.
Now that I’m back home and I have a new power wheelchair, my scooter doesn’t get much use anymore.  But my mobility aids continue to enhance my life.  I now walk independently inside the house and use a cane, a walker, or my power wheelchair or scooter outside the house.  Because of my mobility aids, I have gained confidence that I would have never thought possible just a few years ago.  I travel all over the country giving presentations at conferences.  And because I have a travel scooter, I can still go into any car.  My scooter disassembles into five pieces that can be fairly easily lifted into a regular car trunk.  My mobility aids allow me to have the stamina necessary to travel and enjoy myself.  In short, going “backward” so to speak, in terms of my mobility, has actually been extraordinarily beneficial for me.

Me with my walker, singing my heart out, summer 2014.
[Image description: Me sitting on my walker on a wooden stage singing into a microphone.  I’m wearing a green Disabled and Proud shirt.]

Parents, I beg you, don’t be afraid of the wheelchair.  My wheelchair was the best thing that ever happened to me.  If you even have the slightest thought that a wheelchair might enhance your child’s independence, get them a wheelchair.  They’ll thank you for it later, I promise.

Soon, I plan on writing a follow up post debunking popular myths that parents have about using mobility aids.  Let me know if there are any specific myths you want me to address!

Fist pumping at the Society for Disability Studies conference dance, June 2014!
[Me sitting in my power wheelchair, which has large manual wheels as well, pumping my fist into the air with a giant grin on my face.]