Exploring the Riverways of Disability Pride and Disabled Kinship

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by Katie Napiwocki |

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SMA caregivers | SMA News Today | Main graphic for column titled "A Wildflower in the Wheelderness," by Katie Napiwocki

It coaxed out the wildness inside of me.

My wheels chomped at gravel with each twist and turn of the riverside trail I was traveling. Acorns were devoured in satisfying bursts and brittle twigs muddled with stone as my tires carried me through a transforming world.

This riverside trail, well known to me, was always bustling and teeming with life of the unhuman kind. The humid breath of July and ravenous mosquitoes vied to kiss every patch of bare skin. (In the eyes of a mosquito, even unexposed skin was fair game.) Every now and then, the waterside breeze caressed gentle fingers through my hair.

Bold wildflowers bloomed from the lush underbrush and dense bramble beside me. Delicate vines spiraled themselves tightly around the brute trunks of mighty oak trees in an endless summer embrace. Docile waves and the coy tickle of catfish whiskers teased the sandy riverbanks.

I passed an old familiar landmark I regarded as Mermaid Rock while indigo damselflies twirled independently near my feet. When I inhaled as deeply as my lungs could muster, my mind was overthrown by the sweet earthen scent of a thousand accessible summer adventures.

In my youngster years, I had plenty of friends, but none could remotely relate to my life with a disability or SMA. While I kept good company, my thoughts wandered solo. As a child of a divorced household, I spent part of my time in the country and part in the honeycomb network of my small-town neighborhoods.

In the country, our houses were more than a stone’s throw apart. As I journeyed cloak-and-dagger trails to my friends’ houses, the only things on my mind were the shenanigans we’d unravel from a wound-up spool of spirited rebellion and harmless mischief. We’d spend our afternoons sneaking the Ouija board into a desolate barn, and nights whispering in the dark to outmaneuver the moon’s prying spotlight.

In town, we traversed janky sidewalks that led to baseball diamonds. Our teenage hormones were a riot in the bleachers, our hungry eyes flourished, and the bodies running the bases swiped a match across our throbbing juvenile hearts.

The pathways I traveled in my childhood were vastly different than those I travel nowadays. As a kid, SMA friendships eluded me more often than not. I attended MDA Summer Camp and kept in touch with a handful of awesome disabled companions, but it wasn’t until adulthood that the picture of my life became densely pixelated by a cluster of friends within the SMA and greater disability community.

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The construct of my thoughts on the riverside trail helped me reflect on how my friendships evolved over the years. In the disabled community, we coexist much like the dynamic landscape of a river habitat. We require varying elements to thrive, but we hold space for one another and we extend an unspoken understanding. Especially in the climate of social media, we turn to each other, riled up and wild-eyed. We’re inspired to sculpt new passageways, bore arteries, and open hearts to the dire need for impeccable, all-encompassing, unapologetic advocacy and tangible social policy changes.

I won’t claim to possess all or any of the answers, and there’s no way to fully understand what life feels like for all people with disabilities. I can only share my perspective, learn from others, and engage with others to offer support within my means.

When I do, I channel an energy reminiscent of my inner child. I’m enlivened to root for innovation and elevate the spoken words of equity, justice, and compassion, which I see all around me.

We must lead in a way that inspires others to meld their voice with ours and join in our chorus. We must be willing to take the scenic route, answer questions, educate, and allow people to make mistakes.

To all of my brothers and sisters in the disabled community: This column is dedicated to you. You, the storytellers. You, the pirates who hijack their own expedition, turn it on its head and crack wide open its core until the entrails of honesty spill forth. You, the daring marauders. You, the brave wanderers, leaving no stone unturned or unskipped until the ripples of change are set in motion. You, who follow the current of your soul to leave a legacy of gilded compasses for generations to come.

We are tributaries that flow into one another, nurturing the ecosystem of disability rights, pride, and acceptance.

Disability pride is for all of us. Louder voices tower like great oaks. But there’s magic within the nooks and crannies — each wing on a butterfly, each thorn on a blackberry bush, each snake coiled within a log. Every piece of scenery counts, and every person in the disabled community counts.

Every humble friendship counts.


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.

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