DAILY LIVING & MOBILITY

On Stilettos and Stigmas: Living with Spinal Muscular Atrophy

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Maylan Chávez

Once upon a time, in a land 90 miles away...

And 22 years ago, a smile incarnate was born. I, Maylan Chavez, came into this planet with the sunshine in my veins. Along with it, by some twist of fate, came the genetic mutation for Spinal Muscular Atrophy, a degenerative neuromuscular disease which was diagnosed after migrating from my homeland. Since then, I was raised by guiding principles which taught me that my life was no different than anyone else's.

I have struggled.

I've faced many suns at the mercy of obstacles and difficulties. And through them all, I've risen ever stronger. Thanks to the fierce parenting of my immigrant parents, there was nothing in my way. I thrived in a school system not readily accessible to me, I was able to achieve honors through all grade levels, competed (and won) nationally in Health Occupation Students of America, then ultimately graduated from high school at the top of my class (not to mention prom princess), and was accepted into Florida International University.

"The shadows will fall behind you."

Through these experiences, I've been endlessly grateful to be presented with various life-changing opportunities. For 17 years, I was involved in VACC Camp, a week-long camp for children with respiratory issues founded by my very own pulmonologist, Dr. Moises Simpser. Through it, I was given the most valuable lesson I have. There has been no greater example to me than this one magical week where, for once, those of different abilities experience life without the detrimental veil of doubt, stigma, and prejudice. In this, I learned that our human experience is mutual, but society more often than not, outcasts those who are different.

Sugar, Spice, and Everything Nice

Ever since I gained awareness on my purpose in life, I've yearned to demonstrate it through everything I do. I have traveled within the states and even to other countries, such as Mexico and my native Cuba, where travel often deems difficult. I have volunteered at Nicklaus Children's Hospital, I have participated in walks for every cause including rare diseases, I have raised funds through gaming marathons (shout out to Final Fantasy.) Just last year, I participated in Ms. Wheelchair USA where I placed 4th runner-up with my platform: Ending the Inclusion Rhetoric. In it, I advocated for inclusion which does not outcast the disabled, but instead creates a conscious notion to create acceptance for all abilities. I am furthermore honored to say that I have recently graduated as a major in psychology, and now hope to further my education and pursuit towards changing stigmas about mental health. ...all in 22 years! Phew! And I'm only getting started. If you are disabled like me, please remember there's nothing you can't accomplish. And if you aren't, please remember that we all share this experience called life, and there is never any difference between you and someone differently abled. "Keep your face always toward the sunshine - and shadows will fall behind you." - Walt Whitman With all my love, Your friend, Maylan. ❤

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