Hello! My name is Kerry Wiley.
I have contemplated starting Wiley’s Walk for a while. I have written blogs and articles in other places about my experiences with a disability. People have repeatedly asked me “Why don’t you have your own blog?”
Before I launched my own blog, I wanted to be sure I had something to say.
As I begin this journey with my own blog, and share “my walk”, I wanted to first share a couple of articles that I have written that highlight my experiences with Spastic Cerebral Palsy, Disability, and Inclusion.
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.
Growing up with Spastic Cerebral Palsy
The world I grew up in was one where I was engaged, active, and connected with my peers with and without disabilities. My environment was focused on person-centered approaches and inclusion. I define inclusion as active participation and engagement with my peers, with and without disabilities. When I needed support, I engaged the people (professionals, family members, neighbors, and friends) that I needed, and created the tools and supports I needed, if they did not already exist, to thrive.
The diagnosis of spastic CP was not something I wore like a heavy weight. Growing up, I had no idea that I had a lesion on my brain. The way I moved was just how I moved. I found ways to make what I wanted to do happen –for example, if I wanted to play field hockey, I played the game, and I played it with my peers without disabilities. I followed the rules of the game and played with the field hockey stick duct-taped to my walking device. I was an active participant with my peers, and I secured the accommodations that I needed. The field hockey stick that I used might have had a slight curve so that I could hit the ball/puck a bit more easily; that curve of the stick made my access and participation easier.
I also experienced some challenges from spastic CP. Examples of challenges included access within my physical environment, as well as misinformation about my condition and erroneous assumptions that were made about my capabilities due to the visual presence of my walking devices.
Early on, I learned to engage with people and systems, including medical, fitness, and community systems. My mission as early as I can remember was to begin to positively change existing attitudes, perceptions, and misinformation about disabilities. I learned to hunt for, find, and use information, research, and data to create creative alternatives to the “box.” I’ve had the opportunity to become a professional in the disability field, specializing in program development and policy to move beyond the construct of the “box.”
The concept of disability and diagnosis can label, categorize, and stigmatize individuals. For over 20 years, I have worked to change how the concept of disability is perceived. I work to inspire and challenge people to move Beyond the Box. I look forward to sharing more of Wiley’s Walk…
This article was originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).