2014-11-28 Posted By Jenna
“Why are you trying so hard to fit in when you were born to stand out?” - Ian Wallace
As most of you know, I have Spina Bifida. Now, Spina Bifida can take a toll on a bunch of different body systems. Some of us have reduced sensation and muscle function, some of us have decreased bowel and bladder function, and some of us require a brain surgery (or 5) to deal with a condition called, Hydrocephalus. Hydrocephalus happens in a lot of Spina Bifida patients - I like to think of it as the little dog trying to tag along with the big, tough bulldog, constantly and annoyingly jumping up and down to get attention, you know what I’m talking about: http://www.youtube.com/watch?v=ov-1S8Xxd94. Not only does Spina Bifida seem to run the show between the two, it presents itself much like a lottery system because you never can tell where that neural tube defect is going to land on your spine - setting the stage for your life.
Despite all the systems of my body that have been affected by Spina Bifida, it took me a while to realize I was different. (Ahhh! to be child again!) Back in those days, the norm for us toddlers was being chauffeured to the park for play dates in our strollers. If we weren’t in our strollers, we were sitting in the sandbox. At least until one rebel decided to get up (show off!) and do the oddest thing. I kid, of course, she wasn’t showing off, but taking part in what I’m told to be a common exercise called, “walking.” Did I type that right? “Walking?” All I knew was, as soon as this happened my stroller didn’t allow me to blend in, but stand out. (Ironic, eh?)
Stealth in the Spina Bifida department rapidly went out the window after that fateful day at the park. I was now being outfitted with different mobility aids - braces, walkers, wheelchairs, you name it - I was looking at prototypes! The practitioners were trying to normalize my new “gear” with the promise of braces with flowers or butterflies and snazzy wheelchair colours, trying to put a positive spin on the situation (no pun intended). However, as I flipped through the designs and the colours, I found myself being more open to tattooing “LOOK AT ME, I’M DIFFERENT” on my forehead, than what I was being shown. The designs and the colours only made me feel like I would be drawing MORE attention to the braces, wheelchairs and…my difference. I didn’t feel strong enough to be different, I just wanted to fit in.
But after years of boring, white plastic braces and mostly black wheelchairs, I had an epiphany! No matter how I tried to stay under the radar with my “gear,” people always stared, people always asked questions. And because for a large part of my life of being bullied and judged, I believed being different was bad. I was embarrassed, which probably added more fuel to the fire that was what people thought of me. So, very recently I decided I wanted to take control of my image and make a different impression.
I realized that people will most likely always stare. There will probably always be hurtful or ignorant comments and questions, and the chair isn’t going anywhere anytime soon, so I was going to own this! I was going to give people something to stare at - a chair as sleek as the sleekest sports car, with the attitude of a Harley. And let’s not forget about the Phoenix Attitude colours! At 24, I was rising from the ashes of my embarrassment over what Spina Bifida did to me, with the attitude of a fighter. A fighter of ignorance, intolerance and judgement based on a lingering stare. It’s a challenge getting your bang for your buck with only seconds that strangers have to make an impression of you. Luckily, I think the vibrant colours demonstrate a vibrant person, the sleek design demonstrates a need for speed, and that pinecones have no hope in heck of de-throning this gal.
Yes, it took me a long time to finally embrace the ways my needs could reflect a positive image of myself, and not fragility, vulnerability or being broken. It’s so much easier some times to believe the judgement and the ignorance, instead of the support, the compliments and the sheer belief in me that I can find a way to do anything I want to (maybe approaching it just a little differently). We can be our own worst critics, eh? But in the end, I think I needed that time so that I could build up to the confidence of the person I am with every cell in my body.
Having gotten to this place and not really wanting others to struggle on this issue like I did (or at least, for as long as I did), I find myself showing authentic enthusiasm to the kids I work with, when I see a brace or a chair that has flare. I hope that in some small way I’m reinforcing how cool they are for getting creative and personalizing their “gear,” and not the fact that they need it. I also like to highlight the positive conversations that can start by someone seeing the sports logo of their favourite team, their favourite colour, their favourite animal etc. on someone’s braces - automatically forming a bond that transcends ability and gets straight to business - shared interests!
I won’t lie, though, I actually can’t wait for someone to ask me the question, “Why are you in a wheelchair?” and getting to say, “This chair? You wish you had this chair!” Is that wrong?