It took me years to understand that my disability, Cerebral Palsy, would not disappear. It wasn’t until I was sitting in the lobby of a medical building, waiting for my dad to pull the car around, that I realized that the side-to-side gait and tight hamstrings would be my constant companions. I was 11. There would be no magical cure, no complete healing on the eve of my 16th birthday. Nothing. Perhaps it was naive of me to believe that my disability would fade as my childhood passed, but that same childhood was filled with literary stories that usually ended with “and they all lived happily ever after.” This realization that my disability would remain with me throughout my life created a certain amount of cognitive dissonance. What I thought I knew was not matching up with the reality with which I was faced. My disability wasn’t going to go away, and I wouldn’t remain a child. Instead, my disability would journey with me into adulthood.
Transitioning from childhood to adolescence-and then from adolescence to young adulthood-with a disability was not a smooth journey. The cuteness of a wobbly side-to-side gait dissipated when applied to an adolescent frame. As high school gave way to college, the supports that I relied on for more than a decade to keep me functioning, the physical and occupational therapies, were stripped away because I had aged out of the school system. At age 18, medical professionals asked to speak to me rather than my mother. It was as if I had entered another world—and instead of happily ever after, I was faced with “what now?” There was a learning curve: learning how to advocate for myself, to speak up for myself, to learn how to ask for help. How to address the questions of what “happened” to my body. How to set boundaries. I did not always get it right. I still don’t. Sometimes, I was obstinate. Other times, I was afraid of being perceived as different, even though that difference was invasively visible.
Today, I work as an Accessibility Specialist in a university setting. It is my job to help students with disabilities navigate that liminal space between childhood and adulthood. It is my job to ensure that those students have the meaningful access they need to receive an equal education. It can be overwhelming for a student to enter the collegiate world with a disability. Parents, who once attended Individualized Education Plan meetings and made decisions on accommodations, are now asked to allow the student to take the primary role of advocacy. Additionally, students with disabilities aren’t required to even seek accommodation or to identify as a person with a disability. For students with invisible disabilities, like learning disabilities, there may be an extra layer of adversity, even if the student chooses to disclose a disability. In a society that often only legitimizes visible disabilities, individuals with invisible disabilities may feel pressured to “prove” their disability.
I always try to tell the students with whom I work that it’s OK to advocate for themselves; it’s OK to ask for what you need, because, if you do, the worst anyone can say is “no.” If you need something, ask for it. It’s not always going to be easy. Not every day is going to be a good day, but some days will be. People will question you. People may stare at you. People may make comments. It’s OK. It’s OK to not know how to react. It’s OK to not have the right response. The strategies one used as a child with a disability may not be the strategies used to navigate the world as an adult with a disability—and that’s OK. While we may not be able to outgrow our disabilities, we can grow with them-even if it’s uncomfortable.
Katie Smith lives in Asheville, North Carolina. She serves as Accessibility Specialist at UNC Asheville. Katie has a Master of Arts Degree in Disability Studies from the City University of New York. She is a member of the Church of the Brethren and serves as a field associate for Anabaptist Disabilities Network.