It might be hard to believe, but for the first 10 years of my life, it didn't even occur to me that I was any different than my peers.
Of course, I knew I was in a wheelchair, but that didn’t stop me from directing the construction of a pine needle fort or using my wheelchair as right-tackle during a schoolyard football game.
Over time, however, the chasm between the “dis” and the “ability” seemed to grow and the gulf between me and others became wider. This became increasingly evident when my younger brother, Eric, got his driver’s license. With it, came a seemingly never-ending passport to freedom: spontaneous outings to the mall with friends and late-night movie runs.
After all, piling into the back of a car wasn’t an option with my 250-pound wheelchair tethered to me. And with this, the world seemed to pass by me, leaving behind glimpses of experiences I desperately wanted but would never partake in.
As isolating as my reality became, the truth is I didn’t miss much. In fact, I am profoundly grateful for my parents’ unapologetic obsession with exposing me to all of life, even if, by doing so, they risked my own mortality in the process.
My verbose protests didn’t matter. My begging for mercy was aptly dismissed. It mattered very little to them that I was terrified of horses, roller coasters, cliffs, caves, boats or airplanes. What mattered more is that I got out of my wheelchair and out of my comfort zone in order to embrace those things, which without their insistence, I would not have experienced.
It’s not like I have lived life stuck to a chair, but a seemingly impenetrable tension still grips me nonetheless. In the final analysis, it’s not that I haven’t lived life. It has more to do with how my disability affects my life in terms of limiting my choices in how I live it.
And while being in a wheelchair hasn’t completely robbed me from making some of life’s most impactful choices, like those pertaining to my career or my family, it has tangled me in a sometimes uncomfortable web of reliance on others. Whether I need to use the bathroom or I need assistance with cutting my food, someone has to be there to help me.
Perhaps this is why I am most at peace being in the world when the sun is up – when everyone else is busying themselves with the drone of 8 to 5, for this is the time I am most like you. It’s after the sunset when all the uneasiness comes, when my mind wonders to those far off places – not in a geographical sense, mind you, but in ways I imagine some of you take for granted.
What would a solo trip be like to that coffee shop sometime after midnight? Would I even be comfortable there? Would I be disappointed if, after all is said and done, my mind wasn’t as clear as I thought it would be?
Therein lies the tension: I crave being alone and I resent it all at the same time. I want “alone” on my terms and in my time.
I haven’t found it yet. I may never.
I do, however, find solace that my 34 years of life have helped me to accept that while the night may forever haunt me with seductions of what could be, the sun inevitably rises and I am ushered into a beautiful world of what is.
Shawn Murinko is the state Department of Transportation’s ADA compliance officer and serves as a commissioner on the state Human Rights Commission. A member of The Olympian’s Diversity Panel, Murinko, who has cerebral palsy and uses a wheelchair, can be reached at firstname.lastname@example.org.