The Public Speech I’d Never Prepared For (and Wasn’t Ready to Give)

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.)

Why the “Label” of Cerebral Palsy Matters

I have spastic diplegic cerebral palsy. It is very mild, meaning that I can walk without assistance except on uneven surfaces (curbs, stairs, etc.) and I can perform most fine motor skills but need extra time to do so as with cutting and tying my shoes. My left leg is more affected than my right, and I have the most spasticity in my hamstrings, adductors, and my calf muscles.    

     Oftentimes, I feel like I belong in two different worlds—the disability community, and the world of those who have no mobility struggles. I can’t completely relate to either world, which has presented some difficulties.     

    In school, I am in advanced classes, which throws the teachers for a loop. Because I have cerebral palsy, they expect different things from me automatically, which isn’t fair and shouldn’t be true, but that’s the way it is. Everyone else in my classes needs no help moving around, and do not take extra time to get to class. I stick out by default, which I’m used to, but it isn’t always easy.    

    I found out I had cerebral palsy in the third grade, when I was eight. I was diagnosed with CP when I was 14 months old. Before my parents told me that I had cerebral palsy, I was convinced that everyone else had the same difficulties moving around, but that I was just worse at adjusting to the difficulty level. When I was much younger, I had to do occupational therapy, where I would meet other kids, some of whom relied on wheelchairs. Because I have never needed a wheelchair, and my cerebral palsy is much less visible, I never thought I had a disability. I just thought something was “wrong” with me, and everyone else had the same challenge walking—but that others were better at hiding it.   

    Though it was difficult for me when I was told that I had CP, I was also relieved. The label meant that there was a reason why I struggled, and I was grateful to finally know why I was different. It has been confusing at times, and hard to tell other people about my diagnosis when necessary, but most of all, having the “label” of cerebral palsy means that I am not alone.     

  When my parents had the conversation with me about my diagnosis, they were confused why I was crying. The information was overwhelming and hard to take in, like is that really my body you’re talking about?! but the main feeling I experienced was relief. 

“Why are you crying?” my dad had asked me. “It’s not like anything changed. You’re the same as you were before you knew you had CP.” 
He was right to some extent—I had had cerebral palsy my entire life. I was the same person. But in my mind, so many things had changed. I wasn’t just “messed up” or “defective” or any of the awful words I’d thought about myself. No, I had a community now. There were others like me, other people who had very mild CP, other girls who were going through the same challenges that I was. 
My parents read me Amelia Hall’s outstanding article “If I Could Talk To My Younger Self Growing Up With Cerebral Palsy” and it brought me so much comfort. There were other kids who had cerebral palsy and who had gotten bullied, other kids who hated recess just like I did, other kids who were self-conscious and who wanted nothing but acceptance, friendship, and to be “normal”.
  Several years later, I joined The Mighty and was so happy to find that there were indeed others like me. I’ve found my place in the world—the space where it’s okay to not know everything about who you are, the space where you have things in common with others but you’re not the same. Because I don’t know everything about who I am. And no, unlike my teacher once assumed, I don’t know everything about cerebral palsy just because I have it. No case of CP is the same. I found out I had CP later in my childhood, and I’m still learning new things about it now.     

     Having the diagnosis of CP does not necessarily change anything about me—but it does change how I feel about myself. I’m not the only one going through some challenges. I’m not the only one who has mild cerebral palsy anymore. 

I am no longer alone in what I’m facing. 

The Grass Isn’t Always Greener on the Other Side

 The grass isn’t always greener on the other side. You’ve probably heard this saying about jealousy, where there are two neighbors and they both think that the other has the greener grass. It probably sounds strange for me to say, though. 

       I’m more aware now of what I look like and who I am, especially in comparison to my sister. A twin. An aspiring writer. A swimmer and an animal lover and a thinker. But I see the physical side of it, too. Bigger-than-average feet. Skinny, long legs. A left foot that turns in, a left knee that bends toward my right leg, a left leg that drags behind. A right leg that overcompensates. Eyes, the same color as my sister’s, that drift apart, unlike hers. A visually similar face to my sister’s, but a limp that makes some people wonder, What went wrong?

And I finally have the answer. Nothing. Nothing went wrong. I am the way I am for a reason, and my sister is the way she is for a reason. Despite what others may think, despite the thought process that made my teacher ask, “Did your sister sit on you when you were in the womb? Is that why you are the way you are?” in a tone that implied I was wrong for being the way that I am, I’m content. I wouldn’t wish for my sister’s legs. Mine are frustrating sometimes, but they are a part of me.

     Having cerebral palsy and anxiety and growing up with a twin sister who has neither isn’t always easy, though. I am glad that she doesn’t have to face the challenges that I do. If she did, it might help her understand me a bit more—but I wouldn’t want her to go through the mental, emotional, and physical pain. Because we are twins, people tend to compare us. Whether it’s intentional or not, it happens. It’s kind of natural at this point, but that doesn’t mean that it’s easy to get used to. I have anxiety (also known as generalized anxiety disorder) and I get in my own head too much. So when I do get compared with my sister, I always think that I compare unfavorably. A lot of that pattern of thinking has to do with my insecurities about having cerebral palsy. 

       Cerebral palsy means a lot of things for me, and it is also an example of a huge difference between me and my sister. I have CP, and she does not. As a result of CP, I am probably one of the most unathletic people you will ever meet. My balance is pretty bad, and I move slowly and carefully. I am hurting a lot, if not all, of the time. That has not stopped me from going to school, going horseback riding whenever I can, and swimming as much as possible (in the summer, because I don’t have a pool). That being said, I have never been able to do a team sport. My balance is unreliable, I move too slowly, and things like running aggravate my hips. 

     My sister started playing recreational soccer in the third grade, and has progressed to the point where she made the high school soccer team. It has been a very positive experience for her, and my family and I are so happy that she made the team and is doing well with soccer. Her teammates are so encouraging and nice, and my sister works well with them. They act like, well…a team. 

   It is no secret that I sometimes struggle with making friends and sharing common interests with others. After-school activities, aside from academic clubs like Beta Club and Battle of the Books, were never really a thing for me. Physical therapy and, when I was much younger, occupational and speech therapy, were the after-school activities I participated in. My sister has soccer practice two to three times a week now, and her games are every weekend. I go to support her, but I can’t help watching how her team interacts. It makes me wish I could be on a team like that, as happy as I am for my sister that she has something she loves.

It was and is still hard for me that my sister is an athlete, and I struggle with physical activity. Even when we were little, she started walking early on, and I began to walk at 2 ½. In school, she would run along with the other kids at recess and I would either watch or try to run, too, when I would fall down, unable to keep up. 

I hate this side of myself, but at times I’m envious at how well my sister can run and do physical activities. When we were in elementary school PE, she would run past me with ease, earning an A in the class, while I received an F because I couldn’t run a mile in my AFOs (or leg braces). I would be grateful to be able to run for a long time. Running looks so freeing. 

   PE continues to be easier for my sister than it is for me, and that’s fine. I expect that. I have a physical disability. It’s just that comparisons between us are inevitable, and I feel like I fall short.

         However, having CP has aided me in so many ways, and my sister doesn’t have that. She has performance anxiety. I hate that for her, because I know how frustrating anxiety is. One thing that my anxiety has not tampered with, though, is my love of performing. I have been poked with needles, endured countless doctor and therapy appointments, gone through a little over ten surgeries, placed in itchy casts, lost loved ones, and heard people’s opinions of my disability—when I have by no means asked for them. I have been called “crippled” and told that I am wrong for being the way I am. Accusations have been hurled at me for not looking the way that society thinks an individual with a disability should look. So no, performing in a theatre production or singing at a choir concert doesn’t scare me.

     Although I don’t share my sister’s performing anxiety, I can definitely empathize with her. Anxiety stinks. If there can be a benefit to her having anxiety, it’s that I feel like she understands me better. She now knows what it’s like to have anxiety, although experiences with anxiety are not always the same, and gets that it’s no picnic or walk in the park. 

      Another advantage having CP has given me is that I know what it’s like to struggle. That may not sound like an advantage, and sometimes, it doesn’t feel like one. But every day, I have to get up knowing that there will be difficulties and pain. I struggled to walk and to write and to hold my fork. As a teenager, I’m still working on tying my shoes, a task that no one understands why it takes me half an hour to execute. It’s still hard to walk sometimes, and PE is difficult. I’ve been through occupational therapy, where I learned to write, and speech therapy, after which my stutter calmed down a lot and I can pronounce my “s” sounds. I still do physical therapy, where I know that every time, my therapist will have a new challenge for me. I also have sensory processing disorder, and I have to try to deal with the sounds I’m sensitive to. And having anxiety, I am constantly in a losing battle with my own mind.

       My sister doesn’t have a disability. School, especially math, comes naturally to her, whereas I have to work pretty hard at math. We’ve both lost people we love, but my sister doesn’t struggle very often. So when something that is challenging to her comes along, she doesn’t know what to do. Things that don’t come easily to her frustrate her quickly. When she was having to condition in preparation for her soccer tryouts, she complained about how hard it was. I tried to assure her that she was doing great, but after a while of hearing about it, I told her that I probably wasn’t the right person to talk to about running and asked her to please consider who she was talking to. I felt like a bad person afterwards, because no matter what, I always try to be supportive. Jealousy or envy is not an emotion I like. But I just couldn’t take it anymore.

      My sister doesn’t often encounter things that are difficult for her. She’s not used to struggling. If there’s one thing I can say, it’s that I have a lot of practice with perseverance. 

     As close as my sister and I are, we will never understand each other completely. That’s okay. We were meant to do different things in life. My sister is one of my advocates. She speaks up for me when I face people that are mean-spirited. She supports me when I’m having a hard time. And really, that’s all I can ask. 

     So, yes, my sister and I are twins. That doesn’t mean we will ever be the same. We weren’t supposed to be. My having cerebral palsy doesn’t necessarily mean that she’s better, just that we’re different. And no, in case you’re wondering—my sister did not sit on me when I was in the womb. That’s not how cerebral palsy works. And as much as my twin has influenced my life, she has nothing to do with why I have CP. Even though we’re different, and even though I’m sometimes frustrated with the things she’s able to do and I’m not—or the different experiences we have—we are sticking together. Because that’s what sisters do.

 You might think that the fact that I have a disability and my sister does not would mean that I would trade with her, but I wouldn’t. I like the way I am, regardless of society’s opinion.

 As you can see, the grass might have a greener tint from a different angle, but that doesn’t mean the grass is always greener on the other side. 

     

Top 10 Marvel Quotes I Relate To Having Cerebral Palsy

 

I like the Marvel Universe for many reasons. One of those reasons, I think, is because not every superhero was born automatically super strong, with big muscles and extreme powers. The superheroes are relatable, with real struggles, and they control their own story. I’m not a superhero, but I can relate with the stories of the fictional characters who are.

Here are the top 10 Marvel quotes that I relate to because I have cerebral palsy:

1. “I have nothing to prove to you.” —Carol Danvers, Captain Marvel

I want to be an advocate for people who have physical challenges like I do. I can be an advocate without having to prove that I deserve help. I can educate about cerebral palsy without having to justify that, while my CP is mostly invisible, I do have CP. I like Captain Marvel’s character in the Marvel Cinematic Universe because she is a heroine who knows she does not have to prove herself in order to use what is rightfully hers—to fight for what she wants in the world. I have had to prove that I should be able to use the elevator. I have had to just make things work when people didn’t believe I had a disability. I shouldn’t have to prove that I am valid. Do I want to advocate? Yes. But I can educate without having to prove what I deserve. 

2. “Look, it’s me, I’m here, deal with it. Let’s move on.” —Colonel James “Rhodey” Rhodes, Iron Man 2

Most people are surprised that I have a disability. I have a bit of a limp and my left knee turns in because I can’t really control my left foot. I have a hard time keeping up with other kids my age, but other than that, no one can really tell. Surprise often manifests in insensitive comments. I relate to the above quote in more ways than people know. I wish they could get past the surprise of my having cerebral palsy. I wish they could understand my looking slightly different and it wouldn’t be a big deal. I’m here, I am who I am, and it’s okay.

 3. “If it were easy, everyone would do it.” —Loki, Thor: The Dark World

My challenges are difficult—that’s why they’re called challenges. It takes a lot just to get up and go to school, sometimes. To face another day that I know will be somewhat painful (in the physical sense, at least). I think my obstacles would be hard for a lot of people to deal with. This quote resonates with me because it reminds me that if my challenges were easy, a) it wouldn’t be a challenge, and b) I’m facing things in life that are hard, and I am able to not let it get the best of me.

4. “I can’t control their fear, only my own.” —Wanda Maximoff, Captain America: Civil War

People don’t fear me, per sé, but they do not know what to make of me at times. And, yes, not everything needs a label. But it is human nature to label something, to organize something, in a sense, to understand it. I don’t really fit into a label. My CP (in most cases) and anxiety (again, in the vast majority of situations) are invisible. This makes some people I’ve encountered curious, which is fine, and others ask inappropriate questions and comment negatively. I’ve come to learn that I can’t control what people think of me. Some of them, I know, wonder why I need the assistance of a hand; why my gait pattern is so different; or why a girl who presents as being independent is at the neurologist’s office, etc. While I’d rather people not focus on my physical aspects, I can’t prevent that. It’s natural. I have difficulty with this, but I’ve also learned I can’t control what people say. People are going to say offensive things sometimes, because either they might be uneducated about a topic or for some other reason. I can try to educate people (which I’m working on) but I cannot let other people’s opinions and actions toward my cerebral palsy dictate how I act and what I do.

5. “Pain only makes us stronger.” —Natasha Romanoff, Black Widow

I experience pain almost, if not every day. I have physical pain, and then I have emotional pain. Physical pain makes me stronger because I have to deal with a frustrating circumstance that I can’t control and make my body listen to what I want to do—even if it hurts. Emotional pain, to me, is more difficult. To be honest, I’m used to pain. I have experienced it chronically for six years (in the physical sense), and generally my legs have always hurt, and I have had emotional pain for a long time. With emotional pain, I have to learn to cope with myself—with who I am as a person and my feelings. Like with my legs, having emotional pain can feel like you’re fighting against yourself. But with pain, I have to understand that I am not the enemy. My pain doesn’t really stop, but I have to keep going. It has taught me that when you think something is unfair, you can’t stop until the situation changes. Some things will not always go the way you want it to, and you have to adapt to that. I cannot wait until I am no longer in pain to be happy. I have to go for what I want now, whether the pain is there or not. And if it is, well—I have to be stronger than that pain. I won’t overcome cerebral palsy. I probably won’t overcome anxiety. But I don’t have to let it stop me. There are other ways to do things. Pain opens my eyes to different ways to succeed.

6. “At some point, we all have to choose between what the world wants us to be and who we are.” —Natasha Romanoff, Black Widow

I present myself differently than society’s expectation of what a disability looks like. I am ambulatory and can speak. For some reason, society is stuck on one “image” of what a person who has a disability looks like, and almost any other representation of a disability is dismissed. Considering that at least 10% of Americans have a disability that could qualify as “invisible”, that expectation isn’t realistic. Yes, many people do have a disability that is visible and is more severe than mine happens to be, and that should ABSOLUTELY be recognized. But I believe that people with less visible disabilities should not be judged for needing help, too. That being said, sometimes I feel like the world wants me to be one of two things—someone who appears to have a severe disability, and someone who does not require any physical help and can execute physical tasks easily. I am neither. I fall in the middle. The world might want me to be something different than I am, but the only person I will be is myself. CP does not define me. I don’t believe that a disability defines anyone (people might have contrasting opinions than mine, and that’s okay, too). I am proud of having CP, but cerebral palsy is not who I am, regardless if the world wants me to think so or not.

7. “No man can win every battle, but no man should ever fall without a struggle.” —Peter Parker, Spider-Man: Homecoming

Not everything in life is easy. We won’t be able to master every challenge right away. I can’t conquer every obstacle in my way, and that’s okay. But I should never not try. Life is hard. That’s a fact. But just because it is, I’m not just going to give up. I have things to offer the world, so I can’t just fall on the ground and stay there. It’s true—it takes time to conquer a challenge. But there will always be a fight in me. We can’t just give up. If life wants to give us a challenge, we have to challenge it back. I will be a worthy opponent. It’s okay if a challenge is hard. That’s what a challenge is. But I have too much to do to just give up. I can’t meet every challenge head-on immediately. But I won’t give up, either.

8. “We never lose our demons. We only learn to live above them.” —The Ancient One, Doctor Strange

My demons are my anxiety and, at times, cerebral palsy. That is not to say that I am ashamed of having CP. Not in the least. But I get frustrated. It irritates me when people say, “[so-and-so] overcame his/her disability and went on to do…” Odds are, the person did that while still having their disability. Don’t misunderstand me, it is amazing when people do things that their specific challenges can make it hard to do, but people can accomplish things while having a disability. People who have disabilities don’t always accomplish things “in spite of” having their disability. Suffice it to say, I love this quote because my demons cause me to stop and think about the best way to do something. I don’t overcome CP. I find ways to do things with CP. There is a difference between living above our demons and losing our demons. I don’t let cerebral palsy stop me from what I want to do—but I don’t do things in spite of it, either. There is a way to work with having a disability, and that is what I hope to do. 

9. “We may lose. Sometimes painfully. But we don’t die. We survive.” —Loki, Loki: Disney +

You can’t conquer every challenge. No one can. I tend to fall down a lot (literally, and sometimes metaphorically). I know this is cliché, but when I fall down, I get back up. Not always immediately. Sometimes it takes someone to pull me to my feet. But every time, I know I can’t give up. I can’t just let life throw punches at me and then do nothing. I have to give myself a chance to fail—and eventually, to succeed. Part of what makes so many people with disabilities so special (and inspiring to others, although some people convey that the wrong way) is our ability to keep going, to keep trying—even, and especially—when the odds are against us succeeding. I may fail at a challenge. I will fall. I will cry and get frustrated and wonder why my body won’t move the way I feel it is “supposed” to. But what I will not do is say that my body won, that the challenge won. Yes, sometimes I feel that I’m fighting a losing battle. Oftentimes, I have to fight against my own legs to get them to do what I want. I may fail badly. But what makes me me is that I don’t curl up and stop. I will keep trying. For as long as it takes.

10. “I wouldn’t change a single thing about who I am. Born or made.” —Phastos, Eternals

Some people would assume that if I had a choice for a slightly different life, I’d take it. I have a twin and once my mom asked me if—hypothetically, of course—I would ever like to switch body parts with her. I told her no (no offense to my twin). I said, “My legs frustrate me, but I wouldn’t like to give them up. I am a much better person because of CP.” I have learned the art of adversity, of not giving up when things get hard. I have learned how to better deal with people. I have learned how to accept others, based on how I want people to accept me. I am sensitive to the feelings and emotions of others. I like to think that I would have been this way without my challenges to teach me, but I don’t know that. I’m not sure. While having cerebral palsy does not define me, it is a part of who I am. I wouldn’t be the same person without the experiences and lessons that my CP has taught me. While I definitely, absolutely have flaws—and I could definitely be improved—my CP is not a part of me that I would change. My legs are frustrating, yes. But challenges make us all interesting. My character is infinitely more important to me than my physical attributes, and I feel like CP aids the parts of me that I truly care about. I have a long way to go with self-acceptance at times, but that’s okay. I wasn’t born with cerebral palsy, but it is a part of me that is meant to be.

The Power of Words

 God has bestowed CP upon me, which I used to consider merely a curse. However, as I’ve gotten older, I’ve realized that cerebral palsy truly is a blessing in disguise—and sometimes, not in disguise. 

God has blessed me with the gift of speech and writing. I feel like He did that for a reason. I feel it. I feel that I am supposed to be an advocate for others with CP, since many people with cerebral palsy are nonverbal and that doesn’t happen to be the case for me.

I am able to type and to speak, and I plan to use those gifts. At times, I feel guilty for the mildness of CP that I have, but then I remind myself it’s not my fault how I was born. It’s no one’s fault. It was God’s plan for me. When I do feel guilty, I comfort myself by reasoning that I was meant to be an advocate for others.

But being an advocate for others means that first, I have to be an advocate for myself.

Until recently, when kids said something offensive or repeatedly bullied me, I would either a) brush it off or b) tell my parents. My mom and dad are amazing advocates, and they always have been. They handle situations with grace and make sure to ask me how I would like the situation to be handled.

A few times, I have informed my peers how they’ve made me feel. A few weeks ago was the first time I’ve ever spoken up for myself with an adult. Previously, my parents have been the ones to have the conversation with adults who have hurt me (when necessary, of course).

As you can imagine, confrontation with adults is much harder, and maybe that’s partly why I’ve never really done it. I’ve tried to tell myself: “No, it’s not confrontational, you’re just having an educational conversation.”

No matter how you put it—the situation ends up being confrontational. 

In this case, it was my teacher. 

I had signed up to go on my school’s Beta field trip. I guess I don’t have to justify why I wanted to go—being in the club is enough—but I digress. I had tried to be as involved as possible with the Beta club. (If you don’t know, you need a 3.6 GPA to be in Beta, at least in my school. I have a 4.3 GPA.) Anyway, I ran—and lost—twice for the position of Beta Club Secretary. No one could say I hadn’t tried to participate. 

With this field trip, I could go. I deserved to go. So I signed up. At the time, I figured there might be stairs, but shrugged it off. My teacher, whom I trusted, could help me navigate them. 

It was a Michaelangelo exhibit at the River Center, which, if you live in Louisiana, you know that the places around the River Center can have a fair amount of stairs.

My teacher explained to me that usually there are handicapped spots around the River Center, so we could probably take the elevator or something.

Right. There was no elevator.

Doesn’t matter. So, to better understand, there are words to describe CP that I don’t care for. (5 is the worst word, 1 is the best.)

1) disability 

2) abnormality 

3) handicapped

 4)deformity

5) brain-damaged/Crippled

The last two are different words, but I consider them the same level of offense. 

Maybe some people don’t understand why “crippled” is offensive. The best way to explain it is that the word “crippled” for a person with cerebral palsy (or me, at least) is the equivalent of the word “retarded” for a person with an intellectual challenge, or the word “midget” for someone who has dwarfism. And the word “crippled” may not be offensive for everyone with a physical disability, I don’t know. All I know is that the word “crippled” is offensive to me.

The reason why is because when you call a person “crippled”, while it may be true that the person has physical challenges, that is not even close to what defines them. The problem I have with the word is that it denotes a person’s worth to one thing.

And no one’s worth is just one single thing.

I am worth more than my legs. I shouldn’t even have to say that. I am not in control of the way my legs are. If you want to define me based on my personality, fine. Do that. I am in charge of my personality.

The word “crippled” means “severely damaged or malfunctioning.” I am in NO way malfunctioning. I will never overcome cerebral palsy. It is a part of me. It is not meant to be overcome. I am not damaged. God made me the way I am for a reason. To use the word crippled implies that the person cannot function. I, and anyone with a disability, can function. We are far from dead, far from beaten. I am not a mistake. People that choose to call my brain “damaged” from cerebral palsy are wrong. People can tell me that all they want; I will never ever believe it. I will never, ever believe that I am not functioning. I keep going every single day. Not only that, I thrive.

Not to mention, the word “crippled”—at least for me—sums me up with the thing I am least proud of about my body, and about myself. I am not ashamed of having cerebral palsy, nor is the message I am sending to be ashamed. But is cerebral palsy the first thing I want people to know about me, or to think of when they hear my name? Absolutely not.

Anyway, back to what happened.

On the day we were going on the field trip, all of us gathered in the choir room for the chaperones—one of which was my teacher—to take attendance. After, I met my teacher in the corner. I had asked her if I could stay with her so she could help me on the bus and things like that. A few minutes later, a girl came in on crutches. She had broken her leg the day before.

Not to minimalize the pain of having a broken leg, but having a broken leg is temporary. My condition—cerebral palsy—is not temporary. Cerebral palsy is permanent. I will deal with it my whole life. After six weeks or so, a broken leg heals, and it’s good as new. 

(I know we all have things we deal with in life, but sometimes I’m envious of having a broken leg. It heals, and then it’s just like it was. My legs will never be quite like that. (If that sounds petty, I’m sorry. I don’t mean it to be.))

My teacher, seeing the girl who was on crutches, said, “Hey, come over here. She’s crippled too.”

At first, I don’t even really know if I even registered what she said. But when I did—I got hot all over and felt like I could scream. A lot of people say I don’t really have a temper, because I hide it well and very rarely act on it. But when I get mad, I’m mad. Believe me, I try not to get angry, but to basically refer to someone as severely damaged is uncalled for.

I didn’t say anything, just looked at the floor. Looking back on it, I think my teacher meant it as a joke to put the girl at ease. But honestly, once she got the cast off, she could pretend she never broke her leg if she wanted to. Pretend she’d never been associated with the girl who needed to go slower. I can’t do that. If anything, it’s uncomfortable to be in a group apart from others, which I’d need to do for my whole life—and she wouldn’t—so I would have preferred to be comforted instead of referred to as crippled.

After that, I paired up with my friend and either she or the teacher helped me.

Maybe some of the problem is, I’m able to “mask” pretty well. At times, I feel like I’m directly in the middle of two worlds, but to be called crippled like that in front of someone else— Boom. Done. 

You’re not like me, you’re “crippled”. 

When I went home, I told my parents what had happened to make sure I wasn’t overreacting, and they were both pretty angry. They said that I had three choices—(1) I could handle it with a) an in-person, private conversation or b) an email; (2) they could handle it for me or (3) do nothing.

I didn’t want to do nothing. I did that too much, and the person never ended up knowing that they’d hurt me. At first, I wasn’t thinking of an educational opportunity, but there was that factor, too. And if the teacher ever had another student in her class with a physical challenge, she’d be more careful with the words she used.

I didn’t want to email her. She could easily read the subject line of my email and just send me an apology to passify me, without really knowing—or caring—what she did to hurt my feelings. 

So I decided to have an in-person conversation with her.

This is what I planned to say:

Hi, Mrs. [Teacher’s Name],

I really don’t want to upset you or anything, but—Last Friday, when [girl’s name] came in on her crutches, you said, “Oh, she’s crippled, too.” I just find the word crippled really offensive because it denotes my worth to just one thing, and I am more than my legs. I acknowledge that I have a physical challenge, or special needs, but that’s not all I am. You hurt my feelings when you said “crippled” and I don’t want another kid with physical challenges to be referred to as that.

I just found it really disappointing.

What ended up happening was not what I expected. Getting her to have a private conversation with me was easy enough.

At first I was fairly reluctant to do it. She was my math teacher, and I need the most help with math, although I have an A in the subject. Also, I was aware that I still had two months of eighth grade to go. I didn’t want to make my last two months of middle school awkward.

Despite my misgivings, I embraced the challenge. I want to become an advocate someday for people with disabilities. To do that, I have to learn to speak up for myself. I’ll be on my own someday, and I will need to rely on myself. Besides, I am passionate about words and the way we use them. So I agreed to have the conversation. All I had to do was try.

“Hi,” I tentatively started, my face bright red as she stared at me expectantly, “I really don’t want to upset you or anything, but—l-last Friday, when that girl came in on crutches, you said ‘Oh, she’s crippled, too.’ I just find the word ‘crippled’ really offensive—”

I do stutter at times, and I feel like maybe she would have felt like I was more legit if I’d gotten my words out. 

“Oh, I’m sorry,” she interrupted. “I’ll delete that word from my vocabulary. It’s just like the word ‘retarded’, you know? When I was in school, we never thought anything of it.”

And that was it. She turned to go back in the classroom door. I stood there and eventually followed her, my unspoken words dying on my lips. I never got to explain why I found the word offensive, and she’ll never know. She’ll just think it’s something we don’t do because we don’t do it. That’s sad to me.

More than that, as I watched her walk away, questions filled my head—and anger. She had gotten to say something hurtful to me, and didn’t have the courtesy to hear what I was going to (respectfully) say back. Would my parents be disappointed? I had done what I set out to do, but then again, I hadn’t. I hadn’t said what I wanted—what I needed—to say. 

Helplessness washed over me. Most of the time, I felt helpless about what my legs did and didn’t do. I felt helpless when people said things to me I didn’t like. And I felt helpless now, as I was cut off, the conversation I had engineered too soon drawn to a close. Furthermore, what business did I have being an advocate for others if I couldn’t even get the words out I needed to speak up for myself? I had begun to internalize—you crippled girl—and she put the word in my head. I needed to talk. But she didn’t let me. My first attempt to speak up for myself disappeared through that classroom door. 

I comforted myself—I’m only thirteen. This was my first time advocating for myself. My parents were proud of me. When I got home, they hugged me as I cried.

What struck me was that someone who could be so bold with her words wasn’t brave enough to stick around to hear the consequences. 

So yes, I may have physical challenges. But I have power in other ways. If people don’t want to listen when they make mistakes, that is their choice. But I can be content with my choice to be respectful and speak up for myself—no matter what the other person chooses to do with my words.