A Narwhal Pierces Through Azure Ceilings

On my writing desk sits a narwhal. 

Not an actual narwhal from arctic waters. That would be absurd. 

It’s a stout piece of pottery I painted alongside my niece last winter. We sat together at a creative clay studio, sharing paintbrush swirls and rainbow palettes and giggles. While I painted the seafaring unicorn, she splashed colorful life into a classic unicorn (again, only the pint-sized pottery version). Upon finishing, we sent our masterpieces to be glazed and fed into the mouth of a fiery kiln for an artistic metamorphosis that made my meager talents appear far more grand than they are.

In middle school, art class was a ray of light through the window of my day. 

Sitting at paper-coated tables marbled with remnants of creative forces forged from the hands of my peers, I felt comfortable with my mellow self. Art class was a time for introspection; a time when we were encouraged to crank up the heat on the kiln of imagination within our burgeoning minds. The weirder, the better. Whatever the outcome, it would likely still find its way fastened to a refrigerator magnet or placed atop our grandmother’s fireplace mantle. Our juvenile art was sincere. A true thing of beauty.

Down the hall from the art room sat a gymnasium. In awkward shyness, they dwelled together in the oldest part of the building. The art room boasted an antiquated charm, while the drafty gymnasium was an industrial haunt of youth athleticism.

When gym class rolled around, I’d mosey toward it with dread and speculate which ridiculous activity I’d be sequestered to the sidelines for. The adaptive gym instructor would coach me on unique ways to participate while the rest of the class huddled with the mainstream teacher.

As a kid, gym class made me feel uncomfortable. Like the narwhal, I felt intrinsically out of place. A strange mixture of belonging and not belonging all at once. Wanting to be present and embrace my own distinctive beauty, while wanting to disappear into a world that was better suited for allowing me to flourish with my disability. And ultimately, never knowing which direction I should swim in.

Perhaps, my cringing reflex for the word “special” is rooted in these childhood recollections. 

To consider the narwhal a special creature is a superficial observation. If you look harder, the breadth of its legendary existence is as chasmic as the ocean’s trenches.

The majestic narwhal is highly intuitive to external stimuli and surrounding fluctuations in its saltwater environment. Its enchanted tusk is of herculean quality. It bends significantly without breaking. Gathering in groups of dozens to hundreds to thousands, narwhals are enigmatic allies that thrive in a glacial climate of warmhearted fellowship. 

Thinking about my adaptive gym class adventures, I wonder if it was adults rather than my peers who perceived me as something of a narwhal. 

While I hold the utmost respect and appreciation toward all educators, much can be gained from listening to children’s opinions about matters concerning their disability. And not listening only to respond or react with a correlating modification, but genuinely listening to understand. Often, we’re quick to direct kids toward generalized standards that are established by able-bodied adults who cannot relate to voyaging through adolescence with a disability. 

I wholeheartedly believe the adults surrounding me held my best interest in mind, but didn’t always explore the right questions regarding how my SMA coexisted with my social and educational wellness.

Growing up, my peers were widely accepting and inclusive of me. In giddy camaraderie, we learned to tie our shoes in preschool. Over a decade later, we crossed our high school graduation stage. We journeyed through our coming-of-age stories together in the wake of celebrations, firsts, traumas, hardships, and inside jokes. But above all, a torrid desire to greet the world with our compass of benevolent winds and a map of tomorrow’s mountains.

In my life, I’d venture to say I’ve encountered far more ableism, and downright bullying, from adults than I ever did from my small-town schoolmates.

I don’t think we give children enough credit for their capability of unleashing sweeping compassion, and the amplitude with which they help each other to grow. I sometimes stumble upon realizations that would’ve positively impacted my childhood as a disabled kid in a small town. Through ink, paper, and deep-seated rumination, I write to generate fruitful discussion. 

If you connect with sentiments of the narwhal’s tale, swim fervidly through a sea of self-compassion. Feel the pull of every current. Reflect on the shifting fields of ice cap giants you sensitively navigate. Explore yesteryear’s shipwreck graveyards for clues to social justice diligence. 

Use your signature form of vocalization to gather your pod. And together, pierce through azure ceilings. Marvel at northern lights. Breathe in the brilliance of an arctic sky. 

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.