For the third time that week, I woke up screaming. Through my cries, I heard my mom jolt awake; I felt her hand slowly stroke my hair until my screams from the pain in my legs subsided. I carefully turned over, making sure not to move the IV in my right arm, and closed my eyes. My mom lowered herself back down to her makeshift bed of thin hospital blankets on the floor. She whispered to my father beside her,
“How will she live like this?”
“What do you mean?” my father asked.
“You know… like this,” she said, stumbling on her words. “Waking up in pain. Living in a wheelchair. She’ll never have a normal life again. How will she live like this?”
After an on-field collision with an opposing player, I broke my back during a soccer game at age 11 and was carried off the field in front of all of my teammates. But that was not the hardest part about being paralyzed from the waist down. Enduring the pain of the nerves in my legs regenerating one-by-one was not the hardest part about being paralyzed from the waist down. Spending countless years of my life learning how to walk again has not been the hardest part about being paralyzed from the waist down. The hardest part about being paralyzed from the waist down was confronting the question: Why were my parents so afraid of having a disabled child? Maybe they were scared of not knowing how to take care of someone who is disabled. Maybe they were afraid that their daughter would never lead a fulfilling life. Or maybe, were they terrified that, no matter how hard they tried, they could never heal me?
After years of using a wheelchair, walker, or leg braces, I regained enough feeling and strength in my legs to walk again. Today, I move without any physical aids, although I still struggle to perform everyday tasks. But because I can walk on my own—albeit, with a slight limp—I appear as an everyday, able-bodied person. And for that, people say I am lucky. Why am I considered lucky because I do not appear disabled?
Disabled is not a bad word, yet it is treated like one. People who are disabled are pitied, excluded, and cast aside as unacceptably different. When people learn of my disability, the chorus of responses always takes the same form: “Well, I don’t think of you as disabled,” or “At least you’re not in a wheelchair,” as if being disabled or using a wheelchair is negative. After living with a disability for almost a decade, I’ve grown to understand why my parents were afraid. My parents were afraid of their daughter becoming the Other; they were terrified of the barriers I would face as a person with a disability.
From disability, what I have gained far outweighs what I have lost. Although I do not have basic mobility, I have gained a unique perspective and a limitless work ethic that drives my work, passions, and goals. Through becoming disabled, I have been given the opportunity to see and experience the struggles that people with disabilities face every day in the United States. Disability, in itself, is not an issue. But inaccessibility, inadequate federal policy, and widespread societal misconceptions and stigma make disability an issue. I wish to live in a country where disability is not framed as a problem; the United States is not yet that country, but someday, I want to be the one to change that. My experiences with disability have given me the greatest things in my life: support networks of strong people with disabilities; an appreciation for life, tragedy, and loss; and my dream to become a lawyer and pursue a career in disability legal advocacy. Through my future legal career, I aim to enable the creation of frameworks that make the United States a place where people with disabilities can succeed, lead, and access all resources this country has to offer.
Disability is not a choice. This is how I will always be. But if I were ever somehow given a choice, I would still, always, choose my unique perspective and passion for disability legal reform over the ability to walk without pain. I am disabled. And for that, I consider myself lucky.
This post was written by Mackenzie Saunders, Spinal Cord Injury Law Firm Legal Intern and SPINALpedia Director of Operations. Mackenzie is currently finishing her senior year at Arizona State University, and plans to attend Harvard Law School in Fall 2022. Mackenzie loves dogs, public speaking, and spending time with her sisters.