Why Not Me? Finding Empowerment Through My Disability
We begin with the sad part of my story.
I am twelve years old, away from home, crying in a campsite bathroom, asking the world to pause, maybe even go eternally blank, and wanting the bullying to stop. I clearly remember thinking, why do I got to be born with some messed up looking legs? Why can’t I just look like everyone else? Why me?’
A week earlier, I was ready for nonstop outdoor adventures. When my parents dropped me off at camp, I quickly claimed a tent with a friend and we began plotting our adventures. I fully anticipated an amazing week of outdoor experiences, but that really didn’t happen.
At the end of my week at camp, I was nearly broken. I had experienced intense bullying because I dared to wear shorts and show off my legs. Some of the much older kids spent each day throwing comments at me such as stick legs, twig, and then much worse, like much, much worse. When I fought back, I was threatened with ass whooping by these older kids. My choice was to take the verbal beatdown or take a physical beatdown. I was tough and scrappy, but much younger and very outnumbered. I had enough fights in my life to know that this would go really bad. In that campsite bathroom, where I cried, I had reasons to quit and go home, but I didn’t. I finished the entire week, nearly broken, and wondering ‘why me?’
I was born with a severe version of a birth difference known as CTEV or even more commonly known as clubfoot. The cause is unknown, and it doesn't really matter because we can’t change what happened, but I was told mine was due to a lack of amniotic fluid and malpositioning in my mother’s womb. CTEV impacts the lower limbs, not just my feet. I spent my infancy to preschool years in various casts and orthotics as doctors attempted to correct my limbs. A renowned surgeon from UPMC Children’s Hospital attempted a correction via what is now known as a very archaic surgery (a post-medial release with fixation). This surgery left nearly all patients butchered and significantly disabled as they grew older. In fact, the first two individuals I met in-person that are like me, are now hard charging bilateral amputees. You see, CTEV gets really serious, really fast, and oftentimes causes one's limbs to look different, which can lead to bullying, and bullying can leave one dwelling on the ‘why me?’
As a child, I lived in uncertainty, not knowing when I might lose my mobility. Some doctors said I wouldn’t walk as an adult and they discouraged me from playing sports and even going on simple hikes. I dismissed those doctors and played sports and hiked anyway. In fact, I played hard. I ran so much and so fucking fast that at one point, I was one of the fastest and happiest kids in my grade. I cherished each day of my mobility. I even ran until my feet bled on countless occasions. My love of mobility pushed me into adventure. I lived in the outdoors, playing in dense woods and seeking as much adventure as a child could handle. I would disappear into the woods in the morning and return home under the stars. I discovered that the outdoors is naturally inclusive and Mother Nature accepts my adaptive body; it’s the humans that do not.
In my youth, I pushed the envelope and I still do today. I seek outdoor adventure and occasionally compete in sports. Recently, I was selected to the Range of Motion Project (ROMP) elite climbing team with the goal of summiting Cotopaxi (19,347 feet) while also raising awareness and funds to support the underserved disabled population. Fighting for inclusion and equality is an Everest-sized mountain that the adaptive community climbs each day. Each of us have our own mountains to climb (this includes you) and--for me, CTEV is one of my mountains that I summit every day.
I am also training for what doctors deemed was impossible for me as a child, endurance running. I have already completed half marathons on mountainous terrain with obstacles, and even placed 2nd in the world in my classification. I am grateful for my mobility and that I can go after these challenges.
I am asked in almost every interview, "If you could change the way you were born, would you?" Would I change how I was born and thus avoid getting butchered by doctors, have healthy lower limbs, not be in daily pain, no longer worry about the decline of my mobility, avoid bullying, and all the other negative experiences?
Would I do it? No. I would never change how I was born.
And you might be thinking, “But Scott, why not?”
To me, adversities are opportunities to grow. In this life, I have learned that negative phenomena will happen and this is often beyond our control. We have the choice to either move backwards, stay neutral, or move the fuck forward. I’ve tried the first two options and nothing positive has come from it. Now, I choose to move forward and also recognize the positives from CTEV. For example, without the pain in my limbs and losing the ability to walk on occasion, I wouldn’t understand the human condition of aging and disability and the need for advocacy, inclusion, and accessibility. Without the experiences of bullying, I wouldn't understand the hurt and the importance of empathy and love over hate. Without being born different, I wouldn’t have created my other platform Living Adaptive. From this platform, I’ve met many amazing adaptive individuals and they’re changing the world.
As I went from a broken 12 year old boy to an empowered adult, I found value in my adversities. I began to seek and thrive on challenges that could break me. I pushed my body to the very edge to see how far I could go without dying. And As my empowerment grew, I began to love my differences. Now if you see me on the trail, I wear absurdly short shorts to show off my sequoias (my latest nickname for my legs).
But you know what, I do sometimes wish I could go back and speak to myself, that day, that very day in the campsite bathroom. I would first give myself a hug, and then I would tell that kid that one day, this horrific experience will be used for good. One day, one of the largest outdoor companies in the world will publish this story and you will impact others going through difficult times.
And After everything, know this - I am very grateful to be alive, to be born different, to go through various adversities and receive the gift and opportunity to show myself that one can adapt and thrive despite the adversity you face. As humans, we all experience challenges. The variables change but the human condition is real and universal. When the adversities arise, I don’t say why me, I say why fucking not me?
Click HERE for a clean version of this story is published by Osprey.