Moving Beyond the Label
By Kerry A. Wiley
I was born with a condition called Spastic cerebral palsy. When a person investigates spastic CP, explanations and language like, “Spastic CP can affect both arms, legs, and balance,” or “Spastic CP makes arms and legs stiff, rigid, and resistant to flexion,” appear within research and literature.
Words are powerful. They can create a framework or a “box.” This box can establish a structure of thought, practice, opinions, and conclusions that can be erroneous. I like to push beyond the box and move away from a disability-centered frame to a person-centered frame.
Growing up I did not wear a label; I just moved differently. My parents intuitively understood that I was their daughter first and foremost. I was raised to thrive despite using walking devices or the presence of a medical label. The term “spastic CP” was just that, a label. I did not grow up in a “disability-centered” household. I was raised by parents who did not label, categorize, or stigmatize the oldest of their three children for the way I moved or functioned.
The environment and support structure in which I was brought up instilled the lessons of “no limits.” The idea that there is always a solution when a challenge or obstacle presents itself was my truth from an early age. My parents modeled behaviors that I adopted and carried forward in my adulthood. They may not have called the concepts they taught me by their academic terms – self-determination, person-first, inclusion, or advocacy—but these concepts served as the basis for how I now live.
Within literature, self-determination refers to an “individual's ability to consider options and make suitable and appropriate decisions or choices within their home, school, vocation, and community. Processes of self-determination assure control of one's life,” (Schloss et al., 1993). In the most practical terms, self-determination means developing independence, engaging a system of supports within communities, and having a voice.