I am like no other student. My mild cerebral palsy and the types of classes I’m enrolled in aren’t commonly seen together. My teachers, of course, are aware that I have cerebral palsy, but most of the students are not. I don’t make an effort to hide my CP—I walk the way I walk, naturally, and that’s that—but I don’t appear the way that society views a person who has a disability. Now that I’m much older and more mature, my friends know that I have CP and that I may need help sometimes—like a hand going down the stairs or stepping off of a curb, for instance—but it’s not a big deal to them, and I appreciate that. Yes, cerebral palsy is undeniably a part of me, but it is far from what defines me.
That being said, when I was in elementary school, I wanted to distance myself from having CP as much as possible. I wouldn’t say I was ashamed of it—people watching me closely would notice how often I fell down or needed help anyway—but I knew that my having a disability would not help me make friends. Kids can be extremely cruel, and they don’t want the “burden” or “extra task” of giving help to someone who needs it pretty often. (Most of them, anyway.) I have been so, so lucky in being blessed with amazing, kind, compassionate friends who never seem to mind that I’m slower than average.
Whether I admitted it to myself or not, I tried to hide my cerebral palsy. The road to self-acceptance has always been rocky for me, and quite frankly, I still struggle with the way my legs work sometimes. I don’t always understand it, but—as I try to tell myself—I am the way I am for a reason. Back in elementary school, I also tried to hide my AFOs. I wore them on both legs, and, because I am a person who loves color, the designs were always bright, colorful, and—the way I saw them—pretty. The appearance of my AFOs did nothing to distract other kids from noticing them; in fact, it probably had the opposite effect.
One of my biggest fears was and is words. Words are so powerful. I have always loved using words to convey my experiences, but I am all too aware that they have a negative side, too. I would get bullied whether I “hid” my AFOs or not, whether I told people I had cerebral palsy or not.
Regardless, I never really told anyone unless absolutely necessary. That freedom was taken one fateful day in fifth grade.
We were doing grammar worksheets. English has always been my strongest subject, and I adore reading and writing. I think the end of that class was the only time I’ve ever hated English.
I completed the first half of the worksheet pretty easily and moved on to the bottom half. My eyes immediately locked on two of the words that were repeated in the various sentences: “cerebral palsy”.
The first sentence said something like, “Madeline has cerebral palsy and uses a wheelchair, but she still has friends and goes to school.”
I felt my body go hot. For some reason, seeing my diagnosis in print always shocks me, and I’m not sure why. I guess it’s because I have never met another person who has CP, and as crazy as it sounds, sometimes I think that I’m the only one.
I circled the subject and verb, as it said in the directions, and moved on to the next sentence. The pencil was shaking in my hand at this point.
The second sentence said something like: “Jack is friends with Madeline despite her disability, but he wanted to know more about cerebral palsy.”
I started to get angry. I am very sensitive to words, and at that time in my life, I was still not okay with the word “disability”. I am now, unless the word is used in a negative way, but I wasn’t then.
Secondly, I don’t want someone to be friends with me despite my disability. I want someone to be friends with me who accepts my disability as a part of me.
I put the pencil down, my heart pounding. I had a bad feeling about this. I thought, somehow, that this worksheet full of sentences about a girl with cerebral palsy was going to get connected to me.
And I was right.
My teacher put the worksheet on the screen. She went over the first half of the worksheet, and I tuned her out. I was waiting for something. Then she read the first sentence on the bottom half of the page. Then the teacher looked up and winked at me. I guess she noticed I was looking at her, or maybe she thought I demanded that everything that even mentioned cerebral palsy was related in some way to me. I don’t know. I gave her a tiny smile back, feeling my face get even hotter. But, foolishly, I relaxed a little. If the worst that was going to happen was my teacher giving me a wink because, yes, I had CP and the girl on the worksheet did too, then fine. Except no. She asked a boy near me to share his answers, and he did. I made sure I had the correct answer on my paper and looked up again.
A boy in the next row raised his hand, and the bad feeling in my stomach intensified. The teacher called on him, and he said:
“But what is cerebral palsy?”
I tried as hard as I could to look uninvolved, like nothing in this conversation was relevant, like I wasn’t even there. But I knew it wasn’t going to play out like I had an escape.
I also knew that if my teacher explained CP, and if she explained it wrong, I would be irritated.
My teacher gave me a full-on smile and then turned to face the boy. “Well, we actually have someone who has cerebral palsy in this classroom,” she announced. (She pronounced “cerebral palsy” the wrong way, I noticed.)
I fought the urge to bang my head on my desk. Of course. Of course CP couldn’t just be my private thing. No, it had to be—I had to be—a learning opportunity because of a grammar worksheet.
To be clear, I think disability representation is amazing. In hindsight, it was great that there was a girl who had CP on a fifth-grade worksheet. But it shouldn’t have meant that I had to be the impromptu guest speaker and disclose what I didn’t want to in my own classroom, where some of my classmates had teased me and some of whom I’d never spoken to and didn’t like. Why did they have the right to hear what I hadn’t even had the courage to tell some of my own friends yet?
“We do?” the boy asked, like it was unbelievable, when in reality cerebral palsy is the most common mobile disability in childhood. (But of course, he didn’t know that.)
The teacher nodded, and I braced myself.
“Who?” kids were asking as they looked around, like whoever it was was an alien or a student they’d never seen before.
With a big grin, the teacher asked (more like commanded), “Caroline, would you like to tell us what it’s like to have cerebral palsy?”
Well, the so-called “secret” was out. So much for the confidentiality notice the school always put on my IEPs. I’m sure I probably looked like a deer in headlights. Because, to be honest, no, I did not want to tell these indifferent and some, cruel, fifth-graders what cerebral palsy was actually like—something that they’d never have the capacity nor perseverance to understand.
But I was at the age where I thought I had to do whatever an adult said.
“Um, okay,” I said reluctantly, grabbing on to my desk to support me. The teacher motioned for me to come to the front and face my classmates. The kids were all watching me now, scrutinizing me, for signs of a disability they didn’t even understand.
Not exactly the time I wanted to need my desk for support, but oh well.
I began a hurried (not to mention, awful) explanation of what cerebral palsy was—but in my defense, I’d hardly prepared to tell a room full of twenty-five judgemental people about something I’d only known I had for two years. (My parents told me that I had CP when I was eight years old and in third grade.) “Well, um…cerebral palsy is, uh, also called C-CP,” I stammered. “I, uh, well, I got it because my um-umbilical cord s-s-snapped and…and I lost oxygen.” I paused for a breath, noticing to my annoyance that my knees had started to shake. When I’m nervous or fatigued, my knees shake involuntarily. It is called clonus, and—for me, at least—it’s a symptom of my cerebral palsy. Pretending not to care—given the circumstances—I continued, “-but it-it’s not the same for everybody, and—people with CP aren’t so—so—so”—I tried to take a breath—“d-different.” (I have a bad stutter when I’m nervous. My stuttering is noticeable when I’m anxious, but other than that I keep it in control.)
“Thank you, Caroline,” my teacher said, clearly trying to save the situation.
My classmates watched me with the same amount of horror as if I’d just thrown up. True, I had just word-vomited. I was not ready to explain cerebral palsy. I had known that, too—but I let my fear of disappointing an adult force me into a situation I hadn’t wanted to be in in the first place.
Now, I think—and hope—that I’m better at advocating for myself. I aspire to advocate for others with cerebral palsy, but if I’m honest with myself, I’m not ready yet. And that’s okay.
I came to realize that my CP is mine for a reason. It should be private, or at least, able to be shared when I’m ready to share it—not when someone needs a teacher. Because as much as I do want to help others, if I’m not ready to explain the way I am, then I’m not really helping anyone—just hurting myself.
(And thankfully, my other speeches in school have gone much better. I just needed to separate myself from the equation.)