I’m a Disability Advocate—But It Took Crossing the Grand Canyon to Unlearn My Own Ableism
On April 24, 2018, I emerged from a daring 12-day expedition in the wilderness of the Grand Canyon with a concussion, two shiners, and two twisted ankles. In a call to my dear friend Enid, I humbly told her, “After pulling this off, I think I could run a small country,” to which she replied: “Why not a big one?”
Four years earlier, new to living in the United States, I had decided to explore something majestic in my new country. Having lived in 11 countries for my work with the United Nations humanitarian agencies, it had become something of a tradition. But in all this daydreaming, there was a new consideration I hadn’t previously had to account for: I couldn’t walk unassisted anymore. My muscles were dying.
[time-brightcove not-tgx=”true”]In 2006, at the age of 30, I was diagnosed with a rare, progressive, genetic muscle wasting disease called Hereditary Inclusion Body Myopathy (or GNE Myopathy) that leads to tetraplegia, severe incapacity of one’s arms, legs, and torso. Over time, I transitioned from canes and leg braces to needing a rollator to walk, as well as needing more assistance for daily tasks. Unfortunately, like many people who acquire disabilities in adulthood, my ableist mindset created an intoxicating need to overcome my impairments and prognosis. People with disabilities find ourselves ostracized by society’s ideals of what is worthy and valued. Strangers, as well as those closest to us, underestimate us and question our choices. Our independence, dignity, and agency are threatened, up for scrutiny, debate, and negotiation.
I needed to prove to myself and to others that I could do anything, despite the worsening physical weakness and excruciating pain I endure on a daily basis. So I set out to be a part of the exclusive 1% of the 5 to 6 million people who don’t just visit the rim of the Grand Canyon but go down into its belly. And what yells “capable” more than riding a wild mustang? With that began the planning of this extraordinary quest, and learning to horseback ride, a journey that became more audacious with every obstacle I faced, and that would eventually lead to a short documentary film. Facing the Falls, directed by Celia Aniskovich, produced by Liz Yale Marsh, and executive produced by Hillary and Chelsea Clinton, is out on YouTube today, marking the occasion of International Day of Persons with Disabilities.
As predicted, the quest took everything I had. Before embarking on the trip, I’d envisioned myself as a magnificent Amazonian woman, effortlessly making her way through epic scenery, horseback-riding from rim to rim and white-water rafting 150 miles of the Colorado River, all in the name of fulfilling my quest for adventure and shattering stigmas toward people with disabilities like me. Instead, sitting 8 feet above the ground atop that mustang on the South Rim—with a 12-person expedition team of wranglers, my therapeutic riding instructor, my ex-husband, and a 6-person film crew, not to mention the 4-person boat crew we’d meet four days later—I found myself trembling. I’m a TED speaker who loves public speaking, a former White House political appointee, and an international UN humanitarian who has had some epic adventures in my world travels. But never could I have imagined myself descending for 10 hours down 5,000 feet of vertical loose terrain into the bottom of a Natural Wonder of the World, ugly-sobbing with gratitude upon making it, and starring in an adventure film, to boot. All in the service of making a point.
No, the performance didn’t go exactly to plan—see the aforementioned concussion and a fear of heights discovered in real time. But I’d give myself an Oscar for the real triumph of that trip, the lessons that long outlasted the bruises and injuries and would ultimately change everything for me:
First, I genuinely believe I can do anything—and I’m not talking about walking again. I’m referring to achieving my dreams, chief among them doing my part in dismantling the attitudinal, physical, and institutional barriers that exclude people with disabilities.
Second, that I struggle every day, but I am not suffering. This distinction is paramount and acts as a barometer in my decisions of what kind of support I choose to incorporate into my daily routine.
And finally, that the best way to be a beacon for the disability community, while honoring my personal experience, is to be myself: flawed, courageous, and terrified at the same time, constantly learning, happy to ask for help, loud in the face of injustice, and proudly disabled.
On International Day of Persons with Disabilities, we celebrate and raise awareness of the 1.3 billion people with disabilities worldwide. We remind people that disability is a universal human experience. Every human being will be temporarily or permanently disabled in their lifetime, whether from an accident, illness or injury, from malnutrition, complications of childbirth, man-made conflict, or natural disaster.
We are not an anomaly. We are the largest minority in the world, intersecting with every other identity: gender, age, ethnicity, race, nationality, socio-economic class, body size, sexual orientation, education level, and religion. We are diverse in our impairments, too: physical, intellectual, sensory, cognitive, or related to our mental health. We all, however, face stigma, discrimination, exclusion, prejudice, and bias.
I hope Facing the Falls reminds you of the power of your own worth, and of allyship and solidarity with people who are different from you. You don’t have to cross the Grand Canyon to make a difference. It’s the little things that can make the greatest change. And the hardest challenge—that of just being yourself—is the one that can change everything.