I’m a Disability Advocate—But It Took Crossing the Grand Canyon to Unlearn My Own Ableism
As I watched this courageous woman conquer her fears and prove her capabilities against all odds, I couldn’t help but feel inspired and in awe. Her journey through the Grand Canyon on the back of a wild mustang, despite her physical limitations, is a testament to the human spirit’s indomitable will.
12 days into a thrilling wilderness adventure in the Grand Canyon on April 24, 2018, left me with a concussion, two black eyes, and twisted ankles. I shared my accomplishments with my friend Enid over the phone, modestly saying “I feel like I could manage a small nation,” to which she jokingly suggested “Why not aim for a larger one?
Four years ago, fresh off moving to the U.S., I yearned to discover something awe-inspiring in my newly adopted home. With a history of residing in 11 countries due to my work with UN humanitarian organizations, this was an old tradition for me. However, during my planning, there was a factor I hadn’t accounted for before: I couldn’t walk independently anymore due to deteriorating muscles.
2006 marked the year I turned 30 and was diagnosed with a rare, progressive genetic disorder called Hereditary Inclusion Body Myopathy (GNE Myopathy), which is characterized by muscle wasting and leads to tetraplegia, or paralysis of the arms, legs, and torso. As the disease progressed, I moved from using canes and leg braces to a rollator for mobility and increasingly required help with daily tasks. The mindset that I was able-bodied initially made me strive excessively to conquer my limitations and defy my prognosis. Regrettably, many individuals with disabilities often face alienation due to societal standards of worth and value. Both strangers and those close to us tend to underestimate our abilities and question our decisions. Our autonomy, respect, and control are frequently challenged, subjected to debate and negotiation.
To demonstrate my abilities to myself and others, I decided to embark on challenging feats despite my daily struggles with worsening physical weakness and intense pain. I aimed to join the select group of 5-6 million people who not only visit but descend into the Grand Canyon’s depths. Riding a wild mustang seemed an even greater testament to my capabilities, so I started planning this extraordinary journey. This endeavor grew more daring as I overcame each obstacle, ultimately culminating in a short documentary film titled “Facing the Falls“. Directed by Celia Aniskovich, produced by Liz Yale Marsh, and executive produced by Hillary and Chelsea Clinton, it’s now available on YouTube, coinciding with International Day of Persons with Disabilities.
As anticipated, my journey drained every last bit of energy from me. Initially, I imagined myself as a powerful Amazonian explorer, gracefully navigating breathtaking landscapes while horseback riding across cliffs and white-water rafting for 150 miles along the Colorado River. This expedition was designed to satiate my craving for adventure and challenge stereotypes about individuals like me with disabilities. However, atop that mustang on the South Rim – accompanied by an 8-person team consisting of wranglers, my riding instructor, my former spouse, a film crew, and later a boat crew – I was seized by tremors. Despite being a seasoned public speaker at TED, a former White House appointee, and an internationally recognized UN humanitarian who has experienced numerous thrilling adventures during my travels, nothing could have prepared me for what came next: descending for 10 hours over 5,000 feet of rugged terrain into the heart of a Natural Wonder of the World, sobbing with profound gratitude upon reaching my destination, and starring in an adventure documentary to boot. It was all done to drive home a significant message.
The performance didn’t unfold as anticipated due to factors such as a concussion and an unexpected fear of heights. However, I believe I deserve an Academy Award for the true victory of that journey – the valuable lessons learned which endured beyond my physical wounds and eventually transformed my life entirely.
To start, I firmly trust that I can accomplish any task, and this isn’t limited to regaining the ability to walk. Instead, I am focusing on realizing my aspirations, with a primary goal of contributing to the breakdown of the attitudinal, physical, and systemic obstacles that prevent individuals with disabilities from fully participating.
In the second place, while I face challenges each day, I’m not in a state of constant pain or distress. It’s crucial to understand this difference, as it guides my choices about the type of assistance I opt for in my daily life.
Lastly, I believe that the most effective approach to serve as a guiding light for the disability community, while respecting my personal journey, is by authenticity: imperfect yet brave, fearful yet bold, always learning, unafraid to seek aid, vocal against injustice, and unapologetically proud of being disabled.
On the International Day for People with Disabilities, we honor and spread knowledge about the 1.3 billion individuals living with disabilities globally. We emphasize that disability is a shared part of the human experience. It’s essential to remember that each person will encounter temporary or permanent disability at some point in their lives, due to accidents, illnesses, injuries, malnutrition, complications during childbirth, conflicts caused by humans, or natural disasters.
In simpler terms, we’re not unique or rare. Instead, we make up a significant portion of the global population, encompassing various characteristics such as gender, age, ethnicity, race, nationality, social class, body size, sexual orientation, education level, and religion. Our differences can be seen in our physical, intellectual, sensory, cognitive, or mental health conditions. Regrettably, all of us experience prejudice, discrimination, exclusion, bias, and stigma.
As I sat down to watch “Facing the Falls,” I couldn’t help but be moved by its profound message. This film, much like a mirror, might inspire you to reflect on your own value and the importance of empathy and unity with those who differ from you. Remember, you don’t need to scale the Grand Canyon to make an impact; it’s often the smallest actions that can spark the most significant changes. The toughest hurdle—the struggle of simply being true to yourself—can, in fact, transform everything.
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2024-12-03 19:06