1) THE BASIC INFO: Cerebral Palsy is a disability that impacts body movement. It isn’t progressive. It isn’t contagious. But it is permanent. It doesn’t always affect cognition but it can. Mine primarily affects my legs, and my ability to balance and do certain tasks that require coordination.
2) I have the type of CP that is called spastic diplegia. Basically that’s a fancy way of saying that the muscles in my legs are very tight, and they tighten when I’m doing things that involve other muscle groups.
3) Cerebral Palsy is a result of brain damage (a lack of oxygen) that impacts the part of the brain responsible for certain movement. That’s why my leg muscles contract when I’m really intent on something, or anxious about something, even sometimes when I laugh.
4) I set the for the freshman girls static arm hang in gym class. I outlasted even the girl on the school gymnastics team: one minute and seventeen seconds.
5) I’ve had so many surgeries, it’s difficult for me to remember all of them in instances where my medical history is needed.
6) I use Canadian crutches to walk short distances, and a manual wheelchair around my apartment and for longer distances.
7) I live in accessible housing, which means that all the surfaces are lower, and the doorways are wide enough that my chair can fit through.
8) My family is great at adapting things for me. My great-grandpa adapted a Big Wheel for me to ride when I was 5 or 6 years old, building pedals with straps to secure my feet so I could ride. My dad made something that attached to my chair so I could carry my crutches, and my mom is constantly thinking outside the box with regard to accommodations.
9) I ran the mile in 4th grade, as was required by all the students. For some reason, though, I didn’t run on the track. I ran instead in an empty gym. Just me and the adaptive PE teacher. It was cumulative, and I had to complete a certain number of laps. It took me 45 minutes, and by the time I was done, I was so exhausted I just wanted to go home.
10) I had major surgery on both legs in 5th grade, and was out of school for two months recovering. I was even home-schooled for a bit so I didn’t fall too far behind.
11) I wore leg braces until seventh grade. Buying shoes was always a chore, because they needed to be a size or so bigger to fit over my braces.
12) My difficulties with fine motor coordination meant that I couldn’t successfully tie my shoes until I was ten years old. I also struggled in 10th grade geometry because I found it physically impossible to use a protractor.
13) Whenever my friends did something active, and told me about it later, like “I would have invited you over, but we were jumping on the trampoline,” it always hurt. I would always rather be asked. I enjoy watching, and even more if someone is able to think outside the box with me and come up with a way I can participate.
14) During a spelling test in the fourth grade, my teacher once used me in a sentence for the word different. The sentence went something like: “Tonia is DIFFERENT from everyone else because she has a disability.” Hint: if you’re an educator? Don’t do this.
15) As a kid, I loved playing outside and doing physical things with my sister and brothers. Playing on our play fort, kicking a soccer ball. I loved climbing little trees or hills.
16) It’s always strange to hear acquaintances or complete strangers tell me “good job” while I’m walking. Do they tell anyone else good job? Just me?
17) As a teenager, I went to camp for kids with disabilities. It really helped my self-esteem to be accepted for who I was, and also to be in the position to help others, instead of always being helped.
18) Taking swimming in middle school gym class was the most awesome experience because I realized I could walk unassisted the entire length of the pool, The water helped me keep my balance. Coolest experience ever.
19) I once was the goalie in an elementary school soccer game (a big step up from being relegated to keep score) and I was devastated when the other team scored against me. I thought I’d done a horrible job and ended up in a bathroom stall, crying, because I thought I’d let my team down.
20) It’s never NOT awkward when someone in authority (teacher or boss) instructs everyone to stand and then looks to me, and laughs nervously and says, “Tonia, you don’t have to.”
21) I ended up working at a summer camp briefly in my 20s and the number of children who came up to me and said that “they know it’s not nice to make fun of people who are different,” really surprised and impressed me.