When Someone Said It Must Be Awful to Be 'Wheelchair Bound'

“What does it feel like,” she asked sheepishly, her tone equal parts curious and concerned. I kept my eyes down and fixed on the row of scented candles I was scanning. Slowly running my fingers over each cylinder block of wax, I stopped when I got to Vanilla Sugar. I knew this was the one I wanted to sweeten my living room, but I took extra time savoring the trail of milky warmth that had filled my nose before putting the pillar of perfume into my basket.

Secretly, I hoped I was making good on my attempt to pretend I didn’t hear her inquiry and that my lack of acknowledgement would send a silent signal for her to keep moving and focus more on the crumpled piece of paper she held between her thumb and forefinger – a shopping list she had no doubt lost and then found at the bottom of her tangerine tote.

Her presence was still just as strong as the bouquet of sweet and spicy fragrances circling the aisle we shared, and I knew my pseudo-rudeness had failed, miserably. I have grown accustomed to being on the receiving end of sideways glances and impromptu interrogations, and on some level even welcome them – if it means an opportunity to encourage a person to widen their scope of understanding about disability or differences. In this particular moment, the energy I needed to elicit the right kind of
enlightenment was dangerously low. But my level of experience with these kinds of encounters is high enough that I knew exactly where her question was leading, and I didn’t want to follow. I let her take me there anyway.

“It must be awful to be wheelchair bound,” she said matter-of-factly, simultaneously removing her glasses from her face, as if unobstructed eye contact would help convey just how sorry she was for my
predicament. I kept my breathing steady and my eyes on the slightly reddened indents on either side of the bridge of her nose where red wing-tipped readers had held on. I had zero interest in seeing the pity she felt.

What her designer specs failed to make clear was that the neon green wheelchair under my butt is no more a part of me than the lenses attached to the gold chain looped around her neck. She needs an aid to help decode the dribble etched into a notepad just as I need a (much bigger, more tricked-out) aid to help fetch items on my own Need List. But in just a 20-second superficial interaction in a supermarket aisle, she chose to surmise that my (supposed) lack of physical prowess also meant a life unfulfilled. And why? Because my life’s interpretation of mobility differs from her own?

Disability will forever be in my lexicon, but I don’t have a large arsenal of trigger words surrounding its definition. It’s complex and challenging, and in their misguided pursuit to understand, even the best people will trip up and say something ill-founded. I get it. I’ve jammed my stinkin’ foot in my big ‘ol mouth more times than I care to admit. But, even in empathy, I am allowed a red-hot button. Wheelchair bound will always ring the alarms in my mind.

It’s no Best Kept Secret that I am a lover of words and the imagery their pairings make pop off the page, but I absolutely hate those two together. Side-by-side they offer the sideways idea that myself, and other wheelchair users (if you spot one of us outside our homes – gasp – and feel compelled to describe the scene, please use this word instead) are trapped in broken down bodies or shackled by invisible chains, condemning us to days spent fighting and trying to break free from a small, boxed in life.

Often, people awkwardly stare or stand impressively still, or better yet, lunge in an opposite direction as I roll by, and I know it’s because they don’t know any better. So I try to calm their uncertainties with a
quick smile and even faster hello. And as their shoulders relax, their hair falls flat and their ears come back to the top of their heads, (oh, wait, that’s nervous cats. Same difference) I spend a few unnecessary seconds trying to interpret their body language and wondering if, like the lady collecting fall time décor and a few eye rolls from me, that’s really what people think: I use a wheelchair and so my life must be sad and awful.

I have a slightly different perception.  It was a few weeks before my junior year of high school and a technician had just delivered my first-ever power wheelchair. A mammoth of a machine, I was intimidated; I had only used much sleeker, self-propelled manual chairs. I had never controlled anything with a joystick, short of the rare instances I could get my hands on my brother’s video
game consoles. I was never any good at them; my hand-eye coordination wasn’t up to par. And then there was the issue of my insecurities. Even at 17, I knew people made assumptions and that there were
connotations around this kind of chair. I was already awkward and insecure, and I was afraid a power chair would make me look “more disabled” than I am. (See, even within our own communities we can harbor prejudices. Don’t worry – I got over that one real quick.)

No matter my feelings, the facts were that I needed this chair. It was becoming increasingly difficult for me to quickly navigate the packed hallways of my high school and I was growing tired of asking people
to push me to class. I needed independence. I needed to gain control of my life – and gain some confidence. I didn’t know it then, but my life’s course changed direction the moment I sat in a sapphire blue power wheelchair and hit the ON switch for the first time.

It’s taken years of introspection to reach a state of appreciation for this body I’ve been given and who that makes me. I am flawed, and I am not what is considered conventionally able, but I have played the cards I’ve been dealt the best way I know how: with perseverance and humor, both in spades. And when that doesn’t work, the ‘ol “ah, f*** it. It is what it is. I am who I am,” has served me well. These convictions come from the confidence I’ve gained in learning about the woman I am. The moments of my life that have taught me most about myself would not be possible without the power my body
gets from a wheelchair.

I learned I have guts and just a little grit when I chose to pack up and move to Florida, where I went to beaches and bars and drank too much, giving brand new meaning to drinking and driving. I’m older and wiser now. I learned it’s OK to be a little adventurous and travel outside my comfort zone – even if it’s just an inch – when I went to Vegas to celebrate my birthday or Key West to praise the end of finals. I’ve learned I’m a really good time and can dance circles around anyone — you can cover a lot of dance
floor on wheels. I’ve learned I’m really good at my job and in the office with my coworkers is one of my favorite places to be. And most importantly, I’ve learned I really enjoy running (did you think I was going to say marathons?) errands. I really enjoy running errands. Like going to the grocery store for almonds and grapes and getting sidetracked by candles smelling like candy and snooping shoppers who suspect my life is awful.

“It’s really not terrible – I’m good,” I tell her with a half-smile. But in my mind, where my snarkier side hides, I thought, “Oh, I don’t know – I always figured keeping track of glasses would be harder.”

I leave her there and go to check out, but not before almost sideswiping a magazine rack (I’m no longer 17, but I’m still in the prime of awkward.) I glance around, thankful no one eyed me with a “oh, you poor thing” look. That’s another installment of Things Never to Say to a Woman Using a Wheelchair – unless you want to see her head roll, too.

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