“Difficult” Doesn’t Always Mean “Bad”—Life Is The Most Precious Gift I’ll Ever Get

 “Don’t pray for an easy life. Pray for the strength to endure a difficult one.” —Bruce Lee

Recently I have had a hard time accepting the world for the way it is. The world is not always a kind place, sometimes especially to people who have disabilities or other challenges. I don’t say this because our lives may be harder. No, as we all know, so many blessings come from leading a life of adversity. I say it because of the views that people have on the lives of others who deal with adversity.

In biology class, we are learning about Duchenne muscular dystrophy and the ways that the people who have DMD are affected. I am naturally interested in this topic as I like learning about other disorders/disabilities and the muscular system. Also, cerebral palsy and Duchenne muscular dystrophy share some similarities.

If you don’t know, Duchenne muscular dystrophy happens when the protein dystrophin is genetically altered. Dystrophin is a muscular protein that protects and strengthens muscle fibers as muscles contract and relax. However, there is either a lot less dystrophin or a total lack of it in people who have Duchenne muscular dystrophy. People with Duchenne muscular dystrophy have a lot of creatine kinase, which is an enzyme that stores energy for myocytes to use during contraction. However, when people who have DMD exercise, the cell membrane tears, causing creatine kinase to leak out of the cell and into the bloodstream and the muscles to atrophy. DMD is a degenerative condition, which means it gets worse over time. (People with DMD generally live until their mid- to late twenties to early thirties.) 

On the other hand, people who have cerebral palsy (CP) have a usual life expectancy, except for in rare cases. Cerebral palsy is not degenerative, but it could be considered progressive. People with CP move in an unnatural way that is very hard on the body. Eventually, this can cause joints and tissue to break down. Over time, aches and pains get worse because the muscles are too spastic and tight to move and stretch.

Ultimately, both conditions result in more limited mobility (even slightly) and ambulatory devices such as leg or ankle braces (AFOs), walkers, canes, crutches, and wheelchairs are common. Most people think that CP and DMD reduce quality of life. It’s true that CP can be hard to live with sometimes. I am in a lot of pain and it is difficult to move around, but my quality of life is amazing. Even on my most painful days, there is no part of me that wants to cease the will to live. 

That’s probably why I was so mad in Biology when a boy said, “If I had DMD (or if my muscles didn’t work) then I’d kill myself.”

It might sound a bit odd, but the first thing I thought of was the book Wonder by R.J. Palacio. In the book Wonder, the protagonist, August “Auggie” Pullman, has several craniofacial differences that cause him to be judged by his classmates. Gradually, his classmates learn the lesson “don’t judge a book by its cover”, but his classmates had no idea what Auggie’s life was really like and viewed it negatively. Specifically, I thought of the scene where the class was dressed up on Halloween and the character Jack, who was dressed as a mummy, said: “If I looked like him, seriously, I think I’d kill myself.” Auggie described, “I felt like I’d been kicked in the gut.” In that moment, I felt the same way.

The boy in my Biology class saying, “If I have DMD, then I’d kill myself,” was probably a knee-jerk reaction. People fear the unknown. With DMD being degenerative, it could mean a loss of independence. Most kids my age have no idea what it’s like to depend on other people for mobility. DMD leads eventually to death. I guess the boy meant that living a shortened life knowing that independence would decrease until an early death would be scary. No matter how early death comes, life is beautiful while it lasts.

Who are we to judge someone else’s quality of life? If you don’t live that person’s life every day, if you don’t feel what that person feels, how could you choose to end the person’s life automatically? How could someone diminish what someone else’s life is worth just based on a diagnosis? As I say this, I know that there are others out there who would feel that they, too, would end their lives if they had a potentially devastating diagnosis. But how could you make that choice if you don’t know what it’s like to live that life?

I guess I was affected by the boy’s comment on a more personal level as well. Often, I feel like it’s my job to advocate for all people with disabilities—not just people who have CP. 

No, I don’t know what it’s like to live with DMD—but I do know how it feels to have a loss of independence. 

I know what it’s like to not be able to keep up with others your age. 

I know what it’s like to be in pain every day—pain that is constant and stabbing. 

I know what it’s like when your body does not do the things you want it to do. 

I know how it feels when it seems that your body should be able to support you, but it’s buckling instead.

I know what it’s like when others judge you based only on your condition.

And, by the boy’s statement that he would kill himself if his muscles didn’t work, I felt personally impacted. My muscles don’t work the way that most other people’s muscles do. That’s okay. But what I don’t know how to deal with is someone assuming that my life isn’t worth living. 

I don’t understand how people could think that my life isn’t worth living.

My life is worth everything to me.

And yes, having CP has given me a lot of challenges—probably more than my fair share. But CP has also given me an abundance of blessings, and I should never forget that. I hope I never do. 

Because of CP, I have gotten to meet people that I consider family. I have gotten to write for many platforms such as The Mighty, The Cerebral Palsy Foundation, and MSN. I have been gifted a bike by the McLindon Foundation and have been featured on WAFB. I don’t say this to brag, but to demonstrate that having CP isn’t the awful life sentence that some people might assume when faced with the facts of the diagnosis.

Even if I had not have had the opportunities to write and share my story, there are so many simple things on a daily basis that are worth everything to me. Laughing with my family. Going to school and learning new things. Talking with my friends. Hanging out with my twin sister. Playing with my beagle (who is quite possibly the most adorable dog in the world). Writing. Swimming, which is the most freeing feeling I can imagine. 

My life is very difficult sometimes. I feel like I didn’t get as much of a chance to be a kid—I couldn’t run or do physical activities very well and I am always going to doctor appointments and such things. But just because I may be frustrated with what is hard for me doesn’t mean I’m ready to give up on my life. And I’d be willing to bet that people who have DMD feel as though their lives are worth everything, too, no matter how hard having DMD is. 

The fact of the matter is that we, being humans, can only work with the cards we’ve been dealt. There is no reshuffling, no quitting the game. Some people’s deck contains a DMD diagnosis or cancer or CP or another difficult circumstance. But it doesn’t mean we give up. And it doesn’t mean that just because we got a hard deck, we quit the game. Life doesn’t work like that.

I felt like maybe the boy knew himself—maybe he couldn’t handle life with a lifelong challenge. I didn’t know if he could walk in my braces, if he could spend hours upon hours practicing how to write, how to climb stairs, how to stand up. I don’t know if he had the perseverance to try to keep up with his peers even though he would fail, to deal with people’s negative comments, to face insecurities about something he couldn’t help. And even though I have had to work hard and I struggle with many physical things, there is so much I am able to do. My life is so far from worthless. No one’s life is worthless. But I find myself wondering if the boy could truly handle mine—and still realize, through all the challenges, that there are countless rewards and blessings.

Someone can live an extremely amazing life while having a disability. You don’t have to overcome your disability, or challenge, or condition, to live an awesome life. Please think twice before assuming that life with a disability is awful. All lives are worth something. To me, life is worth everything. 

When I’m Reminded that CP Doesn’t Just Affect Me Physically

 It might sound odd that the fact that I have cerebral palsy almost never leaves my mind. I don’t obsess over it (not usually, at least—most times, I am in a good frame of mind), but it’s always there. Yes, I do feel like I have to be cautious a lot of the time, which is probably one reason why, but mostly it’s because almost nothing physical is second nature to me. I think about walking—even if I’m not in a lot of pain that day, which is rare, my legs are still stiff and it’s hard to move around. When I get nervous or fatigued, my legs shake involuntarily. I can sit on the floor, but I have to adjust my position frequently. I think and strategize about climbing stairs, putting on my PE uniform in the locker room….Almost everything physical throughout the day, I think about it.

Sometimes, though, I forget that CP doesn’t just affect my leg muscles. My leg muscles are mainly affected, but my cerebral palsy affects so much more. My mental health and CP correlate most of the time. There are some occasions where I resent my legs and get tired of hearing people’s assumptions and comments about my challenges. But CP also affects my dexterity and fine motor skills.

Fine motor skills are the smaller movements—movements that control the ability to hold things, like a pencil, or cut with scissors.

I struggle with physical things, but also things like:

-typing (the right way)

-folding

- tying my shoes

- putting on some types of clothing (dresses, swimsuits, etc.)

- zippers

- buttons

-cutting things with scissors

- using utensils to cut and eat food

- washing my hair

- putting my hair in a ponytail

- sewing, stitching, etc.

-drawing

-tracing

- graphing

Until recently, I did not realize that putting shapes on a graph and rotating the shape would be a struggle. Now that I am in high school, I don’t draw or cut with scissors very much. There are a few times, but then I ask the teacher for help or find ways to manage. Over the years, I have learned to adapt. In kindergarten through second grade, we did a lot of cut-and-paste activities. I remember gritting my teeth in frustration as I practiced manipulating the scissors, always mutilating whatever it was I tried to cut. “Cut-and-paste won’t last forever,” my parents told me. I wanted to believe them, but it was hard for me to see anything but what I was facing at the time. In elementary school, I never liked art because I struggled so much with it that it wasn’t fun for me. What I tried to create never looked the way it did in my head. 

Art was gradually less of a big deal as I grew older. Instead, art was eventually applied to other subjects. When I started high school, I was put in an honors Geometry class. I am in honors and college classes, which is what I want. In this case, it meant while most other ninth graders were taking Algebra, I was taking Geometry. 

In Geometry, you learn about shapes. I was sure that I would be fine. Math is my weakest subject, but somehow I have been able to maintain an A in math since fifth grade. 

The first unit that gave me a slight bit of trouble in Geometry was constructions. Constructions involve drawing the arc of a circle with a complicated tool that a pencil was inserted into. I had to hold the tool steady on the paper with one hand and hold the pencil in the other hand. Try as I might, I couldn’t do it. My pencil slipped out of my grip. The tool fell off of my desk and onto the floor. It was like my hands were working against me.

Do you have any idea what it’s like when you can’t control your own body? Many people go through that very frustration when they reach old age, but I am a young teenager. It is unbelievably frustrating. I can’t control my legs. I will my legs to do certain things, but my brain sends the opposite messages to my legs. My hands, too, are receiving different messages.

My sister, who was sitting in the desk next to mine, readjusted my grip several times. I looked at her paper: there were several perfect arcs across the workbook page. I sighed and watched her, but could not imitate her actions. My hand-eye coordination is horrible. That’s why it’s hard for me to play badminton and other sports. It wasn’t news to me that I have bad hand-eye coordination, but I haven’t gotten over how irritating my lack of coordination is. 

My sister eventually got tired of readjusting my grip and told me to ask the Geometry teacher for help. I had been trying to avoid that, but I decided to swallow my pride. A lot of times, if I want to do well academically, I have to put my emotions regarding my body aside. 

“I’m sorry, but I can’t— this isn’t working,” I admitted, embarrassed.

Most of my teachers teach advanced classes. They do not interact with many others who take advanced courses and have a disability. 

My teacher again showed me how to do the construction, adjusted my grip about three times, and then left, telling me that I wouldn’t need to do a construction on the test and not to worry about it.

Well, of course I worried about it. I’m naturally a worrier. I sat there helplessly for the rest of the lesson. I kept trying with limited (no) success. 

It turned out that my lack of ability to do constructions did not really hinder me, but my hands were a barrier for something different later on in Geometry—graphing.

We were learning about rigid transformations of shapes. This involved a lot of graphing. The process involved tracing the shape onto transparent paper, moving the paper 90, 180, or 270 degrees, and then tracing the points on the paper back onto the graph. I have difficulty tracing things. It’s hard for me to line the paper up with the object that I have to trace. I knew all of this, but I naïvely believed that my understanding of the rotation concept and my desire to do the rotation correctly would allow me to take part in the unit without a problem.

Long story short—I was wrong.

We were assigned a worksheet on rotations to complete. When I traced the points of each shape, they weren’t aligned correctly. My wrist is weak, so I couldn’t turn the paper fully. The points didn’t fall on the correct coordinates. Therefore, I got every problem on the worksheet wrong.

My teacher thought that I didn’t understand the concept of rotation at first. She assured me that we’d get more opportunities to practice. There are some fine motor skills of mine that do get better with practice, but there are some fine motor skills that it doesn’t matter how often I practice it, I still won’t be able to do it. 

Besides, the test was in a week or two. That was nowhere near enough time. I knew from experience; I used to struggle with writing, and so I had to practice penmanship for years before my handwriting was legible enough to read. 

My teacher gave us another assignment where we had to graph a list of points and perform a series of transformations on those points. She allowed me to graph the points on an online graphing calculator on my computer. Graphing points has always been difficult for me. It is difficult for me to determine the intersection between two coordinates. The graphing calculator made it easier for me to graph the shapes, but it was even harder for me to trace the shapes now due to the graph being on the computer.

Most of the class, including my sister, finished the assignment in class. (Geometry class lasts for about an hour and a half, and we had an hour to do the assignment.) 

I went home having only done one transformation. 

My dad knows that the dexterity in my hands is limited. He often helps me with math. My dad saw what I was doing with the graphing calculator. After watching me try to use the graphing calculator for about two hours, he decided to graph the shapes for me. I know it’s hard for my parents to see me struggle. I was so grateful for my dad’s help. 

We finished in another hour. I was in tears. 

I was so frustrated that my hands couldn’t cooperate. I knew why—but it was hard and it wasn’t fair. It’s difficult for me to comprehend sometimes how I can be in such advanced classes and be unable to do things that most kids my age can do. 

After a lot of practice, I was fairly confident in my graphing ability—just in time for my test about a week later. I had missed my last unit test because I was getting Botox treatment, so I was glad I could attend school for this test. I was pleasantly surprised that my teacher had provided me with a physical copy of the test and enlarged the graphs for me. My confidence increased. I thanked my teacher profusely and sat down to take the test.

I thought I had done well. Most of my answers were choices listed on the test. That night, I reported happily to my dad that I thought I got most of the answers right.

I don’t even know how to say this, so I will just say it:

I got a D.

I was not happy. 

I did everything I could have done—I told my Geometry teacher, I practiced, I got accommodations….

I was mad—mad at myself, my hands, my brain, and mad at my cerebral palsy. I feel like I failed, but that it wasn’t even my fault. It’s not my fault that my fine motor skills are lacking. At the same time, I felt completely at fault because it was my body that made me mess up.

I almost never get D’s on anything. I don’t say that to brag; I say it to make a point. I felt like my CP had caused me to fail. I failed PE one year in elementary school, but generally I didn’t consider PE a reflection of what really mattered about myself. I definitely considered math to be something that mattered. (And yes, I know that a D is technically a passing grade, but a D is not my idea of doing well.) I feel like failing PE in elementary school and doing badly on my math test both was and was not my fault. I couldn’t help my lack of dexterity. I couldn’t help the tightness in my legs. It was so infuriating because I had very little control in either situation. I try so hard to keep school and cerebral palsy separate, but I failed at that, too. Aside from PE, getting to class on time, fine motor skills, and a few other things, my CP and school don’t really intersect. I did badly in academics because of CP. 

The next day, I had Cross-Stitching as an elective. 

I had signed up for Cross-Stitching to have a class with my friends, but it was probably a mistake on my part. Cross-Stitching class, for me, had basically consisted of me just sitting there and watching my friends’ progress—because, unsurprisingly, I couldn’t even do one stitch. I had sketched out a really cute design to stitch, but when I held the fabric in one hand and the thread and needle in the other, I had no idea where to put the thread. Finally, I had just stuck the thread in a hole. The thread grew knotted. The needle slipped from my fingers. I’d tried again and again. Nothing. I was frustrated, but I tampered my frustration down and pretended I was doing fine. 

The day after I got my test score back, I couldn’t tamper down my frustration anymore. My self-esteem having to do with my fine motor skills was extremely low. I looked at my cross-stitching, picked it up, gritted my teeth, and shoved the thread through a hole.

I listened to my friends’ conversation. Sometimes they asked another girl how to do a stitch, but for the most part they could cross-stitch independently. I watched with a little bit of envy.

After about ten minutes with no progress, tears began to stream down my cheeks. I tried to blink the tears back, but I couldn’t stop crying. The sadness, frustration, anger, and disappointment had finally boiled to a point where I couldn’t stop it from showing. My reaction might sound dramatic, but academics matter to me a lot. To some extent, it is what I focus on because I don’t play sports or anything like that.

My friends looked up in shock. They dropped their cross-stitching and ran around to my side of the table to give me hugs. I self-consciously thanked them. When they asked me what was wrong, I showed them my cross-stitching (or the lack of it) and then blurted out, “I got a D on my math unit test.”

“Oh, no,” my more academically-motivated friend gasped. “What happened?” 

She knew that a D was pretty far from my usual grades.

My other friend said, “I’m sorry. At least it is a passing grade.” 

I explained my dexterity issues, while they nodded and tried to understand. Another friend grabbed my cross-stitching and threaded the needle for me.

Later that day, I talked to my special education advisor, who doesn’t usually need to do much for me. I don’t require many accommodations. She set up my IEP (Individual Education Plan) meeting and invited my Geometry teacher.

My special education advisor talked to the school occupational therapist for ideas as to how to help me. I had graduated from occupational therapy services at school a few years earlier and was disappointed that I seemed to be regressing. 

Ultimately, the plan is that I will have a scribe to graph points for me. I am not thrilled about having a scribe because it is my goal to be as independent as possible, especially when schoolwork is involved. I am not ashamed of having CP, but I try not to take advantage of most accommodations. 

I get frustrated that I need help with graphing. At times I feel that my mind moves so much faster than my body, and that is hard for me to deal with. 

I may have a mild case of cerebral palsy, and I may not need as much help as I used to, but I still have cerebral palsy. At the end of the day, I need to remember that my cerebral palsy doesn’t just affect my legs—my hands are affected, too. 

When I got a D because of the lack of dexterity that I have, I learned several lessons. 

I have great friends. It’s okay to get a D sometimes. It’s okay to be a little bit easier on myself because things happen that are not always my fault. It’s okay that I’m not perfect. Most importantly, it’s okay to accept help. 

Hand In Hand: Accepting Differences, No Matter What

 PE this year has been different from every other year. In a way, that’s not a bad thing. With the exception of seventh grade, I’ve always had PE teachers who pushed me too hard (and that’s not easy for me to admit) or were outright mean. This year, my PE teacher is very nice. Due to construction, we haven’t had to get dressed in our PE uniforms very much, and whenever I try to open my locker I can work the combination lock on the first try (something I had to practice for a very long time). 

Something that’s also different is I have a friend in PE.

On the second or third day of PE class, we were walking laps around the gym. I was going pretty slow, and it was easy for other kids to catch up to me. A special education class had come into the gym a little while ago and a few of the kids in the class had run up to my class and asked our names.

I know that it cannot be easy to have a cognitive difference, but I admire how outgoing many kids who have intellectual challenges are. 

A girl was walking behind me with her aide (actually, she was pretty much pulling her aide forward, with long strides) and almost passed me, so I said: “I’m sorry; I walk pretty slow. If you want, you can go ahead of me.”

“Oh, no. You’re fine,” the aide said, smiling with amusement at the girl. “She likes to walk pretty fast.”

“Oh, okay,” I said, and smiled at the girl. She strode forward and clasped my hand in hers, asking, “Walk with me?”

Of course, I agreed, and she pulled me around the gym with her aide shouting at her to slow down. “We friends! This my friend!” she declared to everyone within earshot, and I grinned.

 It would be so nice if making friends were always that easy. 

Every time she spotted me from then on, she would grin, run over, and grab my hand. The first few times, her aide had an apologetic expression on her face, but after a while, I guess she realized that I didn’t mind at all. Quite the opposite, actually. I had no friends in PE up until that point because no one wanted to hang out in PE with the person who struggled physically. Other kids my age struggled to accept me. The girl who’d been walking behind me that day—now my friend—accepted me the instant she grabbed my hand. I just wish other people would do the same for her.

She has Down syndrome, and because of that, other kids in my grade tend to avoid her because they’re unsure of what to say. In fact, they avoid her and the other kids in her special education class. 

Needless to say, I do not. Everyone needs a friend. Not to mention, some kids could live ten lifetimes and not learn to accept others for who they are. She did it in about five seconds—probably less. My physical differences didn’t—and don’t—matter to her.

So yes, I would much prefer her company to a lot of others. 

We had a routine: we walked around the gym—always holding hands (I guess she felt more secure that way. I didn’t mind; the gesture made me feel protective, almost like she was the little sister I never really had); we jogged (she had to let go of my hand because she liked to jog so fast that I couldn’t keep up); we did our stretches (neither of us could balance on one leg by ourselves, so her aide held both of our hands) and then we played badminton. 

I am awful at badminton. She is much more physically adept than I am, but badminton is not one of her strengths, either. We are equally matched, so it is probably good that we play together. It would require patience—more patience than any physically strong kid our age would probably have—to play badminton with either of us, so we play by ourselves. 

About two weeks later, we were walking around the gym, hand in hand, when I heard snickering behind us. I turned around. It was a group of really tall sophomore boys. “They’re holding hands,” one boy whispered, but not quietly at all. I could still hear him. 

“Are they in kindergarten?” another boy asked sarcastically.

I glared at them but said nothing. I didn’t want to make a big deal out of it in front of her. 

All they saw was two girls holding hands, one of them with Down syndrome and the other with a slight limp, in a culture that is largely afraid of differences. 

That’s so sad to me. I wasn’t embarrassed, but I was mad on my friend’s behalf. She didn’t know what had happened, and that was okay. There was no reason to cause her unhappiness just because of two stupid boys who couldn’t accept anyone different from them.

Because those boys don’t know her. All they saw—as unfortunate as it is—was her Down syndrome. Down syndrome is not bad and it is not something to be ashamed of, but it is not what defines my friend either. 

No, those boys didn’t know her at all. They don’t know that she may not say anything when she’s happy, but she’ll smile at you and that’s more than enough. They don’t know that she expresses “thank you” in her own way. They don’t know that she loves drawing and coloring. They don’t know that she likes to wear bracelets and loves dressing up. They don’t know that she wants to be a singer when she’s older. They don’t know that she wants to get her own way, but really, don’t we all? They don’t know that she’s perfectly physically capable. They don’t know that she’ll hold your hand, not embarrassed in the least, and it’s one of the best feelings in the world, understanding that someone needs you even when you feel physically incompetent. 

The most important thing those boys don’t know is that she has more determination than almost anyone I’ve ever met. They don’t see the set of her jaw when we’re playing badminton and she wants “just one more try”. They don’t see her trying to play basketball even when another girl stole the ball from her and cut right in front of her. They do see her trying so hard to be friendly, asking everyone’s names—even theirs—although they snickered when they told her, but they don’t know how much persistence that takes—to ask people questions even when they ignore you. 

Those boys don’t realize that my friendship with her is not an embarrassment to me. They don’t understand that she’s my friend because I accept her. They don’t understand that my friend is so much more than a diagnosis. Mostly, those boys don’t understand how to accept someone for who they are, no matter their differences. 

Ever since I met my friend, I’ve been so grateful. She has taught me so much about perseverance, persistence, friendship, and acceptance. I have a friend in PE. I need her and she needs me. We’ll get through PE hand in hand—no matter what anyone else thinks.

When Kindness Looks Like Climbing The Stairs

 Theatre has been such a positive experience for me so far this year. In third grade, I auditioned for Talented Theater and made the cut. 

In elementary and middle school, theatre was more about the cliques and choreography. 

I was good at neither. 

Cliques are exclusive, and that has never been okay with me. I have nearly always struggled to make friends, and I did not fit in the theater clique. I didn’t talk about the “right” things, move fast enough, or giggle and share inside jokes while the teacher tried to explain acting techniques. I didn’t want any part of a snobby group that excluded other people anyway. I yearned for a group of friends, but as I’ve gotten older I’ve realized that having a perfect group of friends doesn’t exist. I am friends with a lot of people whose personalities differ greatly, and that’s what makes friendship so interesting. 

And don’t get me started on choreography. 

Every year in theatre, I have been a part of the ensemble. Oftentimes, that means learning complicated movements to pair with blocking (the location of the character on stage) and dialogue. My dislike of choreography has a lot to do with my lack of coordination and the limited range of motion I have compared to my classmates. 

Now, in high school, finally none of that seems to matter.

What does matter is passion for telling a story with words. What matters is being supportive of one another. And I have never seen those principles exemplified in theatre more than I have this year.

I thought this year would be more of the same cliques and endless whispering between friends that did not include me. I was wrong—and I’m so glad I was.

Not only have I been included, but I have been accepted. And that means so much, and is worth so much more. 

Stairs are difficult for me. I hate to admit that I need help, but it is absolutely essential that I accept help climbing the stairs. Stairs are a safety concern. I could probably climb the stairs with no one supervising me, but I have falling anxiety. (It’s kind of ironic because I fall down so much. Actually, I don’t know which came first—do I have anxiety because I know what it’s like to fall and I don’t want to go through that again or do I fall because I’m anxious and overthinking things?) 

Anyway, to get onstage in our theater, there is a staircase. I’ll be honest, I was filled with dread the first day of in-class rehearsal. I know how weird this sounds, but every time I know I’ll have to climb stairs, my mouth goes dry and my hands start to sweat. 

I’m afraid of falling down. I’m afraid of being judged. 

But I wasn’t judged. In fact, the exact opposite happened. 

I think it’s true that people learn through observation. My theatre teacher had had to help me up the stairs for the first week or so of class. It was awkward; she stepped down before me and then reached her hand up to grab mine. Even so, I appreciated her help. It was embarrassing for me; I hated that I had to ask my teacher every day to help me.

The problem was, the rail had nearly snapped off the wall. For me, climbing up and down stairs without a rail is not an option. My falling anxiety is a factor, but my feet turn in severely on stairs and can cause me to trip. 

I always feel like I’m a burden when I ask for help, especially for physical things that I feel like I should be able to do. 

One day, when our teacher called, “Everybody onstage to start blocking!” I was filled with dread, apprehension, and anxiety once again. That may sound dramatic, but stairs are a real fear of mine. I hesitated, gritting my teeth as I debated whether to go bother my teacher and ask her for help climbing the stairs once again or to just risk it and climb up the stairs myself. 

I was staring uncertainly at the stairs when I heard someone behind me say, “Do you need my help?” 

I turned around and saw a girl in my class who I’d never spoken to before. I knew she was an upperclassman but beyond that, I knew nothing else. 

“Yes, please,” I said nervously, my voice trembling. I was scared that if I stammered or was too awkward that she would go away. But she didn’t.

“T-thank you so much!” I stammered, grateful.

She smiled at me, nodded, and said “Of course”. Not only was she really kind and nice, but she was also helpful and effective. She rested her arm against mine and then grabbed my hand, reaching back to help me up the last step after she got onstage.

I stared after her, grinning. Not only was I shocked that someone—a classmate—had helped me, but she was also 3-4 years older than I was. I am no longer jaded about older kids, partly because of her. 

That girl helped me up the stairs, but she did so much more. She opened the eyes of more of my classmates; they offer to help me climb up the stairs now, too. She now calls me “baby” and “sweetie” (probably because I am the youngest person in the class). Mostly, she helped me realize that my goal of acceptance is not as far-fetched as I thought. 

I still struggle for acceptance, but I am able to be myself in my theatre class. Theatre was the last place I expected to find friendship, but I did. 

Kids really do learn from others. Anyone can show kindness and empathy; you just have to give them a chance. 

Stairs are not an impossible obstacle. Anxiety can be conquered if you have the right people to help you. I’m not naïve; I know that not all kids are nice. But there are people out there who are nice, and people who know that your challenges don’t matter. 

There are people who will help you and who will only care about what’s inside.

So try something new. People might surprise you. 

I’m Late, I’m In A Rush—But I Can Still Hear You

 High school, for the most part, has been a pleasant surprise for me. Acceptance is no longer as hard to find as it was in middle school. I still have difficulty making friends, but that’s not just because having cerebral palsy can complicate things. I am awkward around other people my age and don’t share a lot of interests with girls in my grade (social media, makeup, clothes, etc.). 

Anyway, kids have been much nicer. Adults, however…. Well, I’m almost always taken aback when I have a negative encounter with an adult. Generally, adults are more polite and are accustomed to seeing things that are unusual. Also, most adults have a filter and know not to say everything on their mind. 

I am often running late. I have eight classes in total, four classes per day. On this particular day, my first class was PE. I was tired from walking laps around the track (my pride gets in the way and I don’t stop walking, even when I probably should) and had gotten a late start getting to the locker room to put my uniform back on. As a result, there was only about a minute until my next class.

A teacher was sitting in a chair in the hallway as I pulled my roller bag down the hall. It was one of those days when I was wondering why my legs couldn’t go just a little bit faster. (I have very high expectations of myself that aren’t always realistic.) As I passed the teacher sitting in the hallway, I gave him a polite smile.

He stared at me and said, “Better hurry; you’re gonna be late.”

“Yes, sir,” I replied and kept walking. I didn’t change my pace—not out of disrespect, but because I know my limits. I was walking as fast as I could.

“Movin’ kinda slow,” he said under his breath as I passed. I bet he didn’t think I heard him. 

I flinched but kept walking. 

I understand that it must be hard to be in a wheelchair. I have to think that people in wheelchairs don’t get these kinds of comments—at least, I hope they don’t. The problem is that my cerebral palsy is not very noticeable. I’m sure that he didn’t think anything of his comment. If my CP had been noticeable, then the teacher probably would not have said anything. 

I found his saying that I was “movin’ kinda slow” offensive. I was trying. If my trying wasn’t enough for him, then it wasn’t my fault. 

At my school, most kids hang out in the hallway and chitchat until there’s only about thirty seconds left until the bell rings. Needless to say, that’s not the way I do things. I am scrambling to get to class until the very last second, and even then I’m still sometimes late.

It would have been nice if the teacher could have given me the benefit of the doubt. I know not everyone—especially not teachers—can do that, because students often take advantage. But I’m not that type of person. 

I have a disability that’s too easy to hide, and I shouldn’t be penalized for it. I try and I try and I try, and it’s not enough. I care about school. I hate being late to class because I hate drawing negative attention to myself. I’m not like everyone else. I can’t always increase my pace or run in the halls. 

I do need a little bit of grace. Sometimes, I need people to keep their opinions to themselves.

I need people to understand that there are people with physical challenges.

No matter what, there are people who try.

I’m one of those people. I’m harder on myself than anyone else. 

And I may be running late, and I may be in a rush, but I still hear a ticking clock in my head. I still hear people’s words.

The Transition To High School on the Road To Getting Older

 High school. I can’t believe it either. (That means I’ve had this blog for about 7 years so far, but who’s counting.) I started high school about 2 weeks ago. My high school is huge, with about 1,300 kids. The halls are extremely crowded, which can sometimes cause a problem because I am not very fast or stable on my feet. My high school is split into two buildings—the STEM academy and the main building. Although we have five minutes to switch classes, a lot of the time I show up late because the walk is a lot further than you’d think. I have accommodations where I can leave class 3-5 minutes early so I can get a head start, but it’s hard for me to speak up and ask my teachers if it’s okay for me to leave.

I did not expect to learn very much in the first two weeks—but as it turned out, I did. I’ve learned how to say the days of the week in Spanish and what a corresponding angle is, but I’ve also learned a lot about myself.

As I mentioned, walking through the hallways is difficult. There are SO many people—most of them trying to get to class, others standing around and talking until the last 30 seconds—and a lot of them are upperclassmen who think it is their right to cut in front of freshmen. I happen to be a freshman that is very easy to knock down. I can lose my balance just from someone lightly bumping me. Sometimes I envy the people who stand around and chat until the last 30 seconds—either they’re just not worried about getting to class on time, or they can walk fast enough to get to class on time. Neither option applies to me. Unfortunately, I worry about getting to class on time and I’m mostly always late. Lately, though, I’ve realized that I need to do what works for me. If leaving class early helps me get to my next class on time, then I need to do that. Easier said than done, of course. Mostly because I haven’t established my credibility with my teachers. They don’t know that I’m not just leaving early to get out of class. (They do now because they have a copy of my IEP.) I have a hard time speaking up. I think it’s just easier to write everything down. I know that is not practical, but with writing I can think about what I want to say and take my time. Speaking isn’t always reliable. My mouth gets stuck on a word sometimes, but I digress. I have been trying to let my teachers know that I need to leave early, and for the most part they are understanding. As embarrassing as it can be to call attention to myself by being the first one to leave class, it is well worth it. I can take my time getting where I need to be. 

Accommodations have been somewhat of an issue this year. I don’t need very many—I need an adaptive PE coach, an in-school physical therapist on a consult basis, a pass to use the elevator, and extra time to transition to my classes. Mostly it’s the physical aspects of school that I struggle with, and some people don’t understand that, considering that some people who have cerebral palsy are non-ambulatory and about 50% of people with CP have an intellectual disability. I don’t happen to fall into either of those categories. My point about learning things about myself is that I have learned I will speak up if my dignity is at stake or if something I pride myself on is taken away.

Health Science is one of my favorite classes this year. So far we’re learning about medical contributions in history, and next semester we’ll learn about medical terminology and human anatomy. I know a lot about the medical field—I have been to more than five types of therapy for over 13 years, and I have had many procedures besides. That being said, I am pretty knowledgeable about medical things. That was why I was taken aback when I wasn’t given the opportunity to take the full Health Science pretest.

If other kids had been in my situation, they probably would have welcomed the easier test. It doesn’t have as many questions. The test isn’t even going in the gradebook. I didn’t care. I wouldn’t be able to make as high of a score on the pretest because I was only given a test with twenty questions—and the test the other kids got was forty questions! My teacher wouldn’t allow me to take the test on my Chromebook like everyone else. She gave me a physical copy. I was fine until I realized that my test only had half the number of questions—and then I got mad!

My academics are important to me. Usually, I make straight A’s, and I achieve that because I work hard. I don’t have any modifications on my schoolwork because I don’t need any. I can keep up with my classmates intellectually—so much so that I am currently taking tenth-grade classes and will graduate high school with an associate’s degree! That being said, I was seeing red as I stared at the test on my desk. 

“Excuse me?” I asked, raising my hand. “Why is my test different?” I still didn’t know my Health Science teacher very well and was timid.

“You need modifications, right?” she asked. I nodded, because I did need extra time with transitioning to classes and occasionally it took me more time to type an assignment. “Yes, ma’am, but—”

“Then that’s why your test is different,” she said.

I raised my hand again, and she came over to my desk. “I don’t need help on tests,” I stammered. “I do really well academically, and I can keep up with everyone else. I need accommodations for walking, but— it’s on my IEP….”

“If you have accommodations, then for right now it’s illegal for me not to give you the modified test,” she said, like she was wondering why I cared about a pretest, of all things, and why I wouldn’t just take the easy way out. 

I guess a fault of mine is that when my pride is about to take a blow, I can’t keep my mouth shut. “Can I take the regular computer test after I finish?” I asked, desperation and the start of tears beginning to creep into my voice. I didn’t want to cry. I really, really didn’t want to cry. But this wouldn’t have happened to my twin sister, who didn’t have a disability. This wouldn’t have happened to other kids who looked just like me. No, because I had some trouble with my legs, I had to take a modified test.

“You can take the computer test if you want,” my teacher said with a shrug. “I just won’t be able to count it.”

With that, my eyes started to well up with tears. “Even if I do better on the computer test?” I asked.

“It’s a pretest, so it doesn’t go in the grade-book,” she reiterated. “Legally, I wouldn’t be able to count it.”

I’m sure I came off as being annoying, but academics matter to me, even if it was just a pretest. I wanted to prove all I knew about health sciences. I guess I wanted to prove, at my very core, that my legs might not work at full capacity, but that I shouldn’t be underestimated. My mind works so much faster than my legs, and that’s very frustrating for me.

I stared down at the test with hatred as I wondered what other questions would be on the computerized version. A tear dripped and splattered the paper. The girl who’d bullied me relentlessly for most of sixth grade—calling me “worthless” and “too slow”, claiming that I held up the class—snickered from across the table. Lucky me, she was in my Health Science class (a 1 in 8 chance) and she sat across the table from me. 

Well, that girl seeing me having to take an easier test was what made me snap. I took the modified test, and my teacher offered to grade it right then. I got a 32/40. I didn’t think that was bad for a pretest, but I wanted a 100% —even if it was just so I could prove my teacher wrong. 

So what do you think I did? I took the computerized test, of course. This time I got a 33/40. I felt a tiny bit better because I got a higher score, just like I thought. 

“I did better on the computer test,” I told my teacher, my voice wavering.

She peered at the screen. “There’s only a one-point difference,” she told me.

“Are you sure you can’t count it?” I begged.

She shook her head.

Lo and behold, my 33/40 was the highest grade in the class. I talked to the assistant principal, who luckily had been my English teacher in sixth grade and knew what accommodations I needed. 

Later that day, I got an email. It was one of the best emails I’ve ever gotten. The email said that my 33/40 was going to be counted. 

I was satisfied. I had proved that although my legs might require me to need extra help, my mind was just fine. I had advocated for myself and things had worked out in the end. (And yes, I was just a little bit happy that I proved my teacher wrong.)

Why My Anxiety is Like the Cycle of The Ocean Tide

 

I worry.

I worry and I worry and I worry. Actually, I have anxiety. It’s not just worry and it’s not just stress. 

People have told me, “Yeah well, we all worry.”

It’s not the same thing. Anxiety (also referred to as generalized anxiety disorder) tricks your brain into worrying about something you probably don’t need to worry about—over and over again.

I know that worrying about certain things is illogical, but anxiety makes my brain go around and around in circles. Anxiety is persistent, and no, it’s not just stress or being nervous. 

My anxiety has been referred to as “silly worries” and I have been called “a ball of anxiety”.  I think sometimes having anxiety means that your brain is discontented not worrying about anything. As a result, my brain tries to find something to worry about. The way I see it, if I don’t worry, then I’m not preparing myself for possible danger. 

As you can probably imagine, trying to go to sleep is difficult sometimes. My brain just won’t shut off. Something I’ve found that helps is a CD of the ocean waves crashing against the sand. The sound is so soothing to me. The ocean waves just splash and then draw back because it is what’s supposed to happen. Though the ocean waves are loud at the beach, in the comfort of my own bed, I can practically feel the cool, ocean-washed sand squishing beneath my toes. 

One  night while I was trying—and failing—to drift off into sleep, a metaphor that perfectly describes my anxiety came to me.

My anxiety is like the ocean waves crashing against the shore.

As confusing as that most likely seems, let me explain.

Typically one thinks of the beach as relaxing. I do as well. The breeze and the wind ruffles my hair; the ocean is cold, refreshing, and so beautifully blue; and the sand is soft and fluffy. 

The ocean is what intrigues me. It is mysterious and powerful—and it has a function.

As much as I dislike my anxiety, it has a function, too. To some extent, it keeps me safe.

I love to watch the ocean. Whenever I go to the beach, I like to collect seashells and what they represent. Seashells are the abandoned homes of sea creatures. Home is just a place for them. Sea creatures don’t worry about leaving their home behind. They just do it.

On that same note, the ocean has a function to perform, and it does so effortlessly. The ocean (obviously) doesn’t have a brain. There is no anxiety involved. Nothing but the sound of the waves. Everything happens the way it is supposed to. There is no overthinking that complicates the ocean’s purpose. 

Thus, my metaphor.

If you watch the ocean long enough, you’ll see the waves draw back. When the ocean waves temporarily recede, shells are left behind on the beach. In my opinion, seashells are really pretty. Because there is a mindless, continuous cycle—in this case, the waves receding and then coming toward the shore—there is a beautiful result (seashells). 

The same is true for the cycle of anxiety. For a while, I am anxious and tense. My brain whirls at 100 miles an hour while I pick my fingers and tighten up involuntarily. But when my brain takes a break from being anxious, I am able to relax.

When my anxious cycle stops, I am able to enjoy the moment. The “seashells”—or the beautiful thing at the end of the cycle—is the relaxation. The realization that I am okay. The reminder to myself that I can just breathe and pause for a second.

When I stop worrying, beautiful things can happen. I can do things I never thought possible because my anxiety is no longer holding me back. The times when my anxiety takes a break, I can do things like going to overnight camp. When my head stops pulsing with thoughts that warn me, You’re about to mess up or have a stuttering episode, I can order confidently at a restaurant. When my brain stops chanting, You’re going to get lost, I can maneuver through a crowd. When I stop telling myself, You’re awful at conversation and no one really likes you, I can go to a small party and talk with my friends.

The ocean waves crashing against the beach will never stop. That is the function of the ocean, the way that gravity works. It is a never ceasing process. But when seashells appear on the shore, it is the satisfying, beautiful result of such a process.

My anxiety is a cycle, too. But the times when I can interrupt the cycle—those are the worthwhile moments that give me clarity. Those are the moments that remind me that my brain is not the enemy. 

Those moments of peace, of separation from my anxiety—those moments are my seashells in the sand.

When A Boy Mocked Me for My Sensory Processing Disorder

 My sensory processing disorder is different than some others. It mostly manifests in eating, sound, and touch. I cannot handle anyone touching me around my shoulders or hips; it hurts too badly. Sounds are difficult to tolerate. My least favorite sounds are screaming, cursing, the fire alarm, thunder, fireworks, and balloons (to name a few). I am a picky eater, but shrimp, eggs, and marshmallows are foods I cannot stand the texture of, and most meats except for chicken and turkey.

The problem with sensory processing disorder is that it can make it hard to tolerate the world. Our world today revolves around sound. Thunder, talking, car engines, etc. are all part of our world today. Food is an important part of both family life and the world, too. My parents are endlessly patient, but because the textures of some foods are hard for me, it is hard for them to parent a picky eater (and understandably so).

In my experience, a lot of people think that sensory processing disorder is made up, but it is so very, very real. They say, “Oh, you’re being too sensitive” or “it’s just anxiety.” I am diagnosed with anxiety and am an HSP (highly sensitive person), but my struggles with sound, touch, and texture are because of SPD. Because touch bothers me so much, I got misdiagnosed with fibromyalgia when I was 9 years old. A lot of people aren’t aware of sensory processing disorder.

This problem presents itself at school, too. Never mind the fact that at theatre rehearsal, when the intercom came on over my head, I clutched my ears and rocked back and forth until the announcement stopped. Never mind that I can’t focus during a fire drill because I have to hold my ears closed.

It all came to a head one day in choir. (I love music when it isn’t too loud—so, no rock music for me.) But I am the dorky musical theatre kid. I was unlucky enough to be seated by an extremely hyper and inconsiderate kid who was screaming across the classroom to his friends. I don’t think he has ADHD; he’s the kind of kid who talks just to hear his own voice — the problem is that he does it loudly.

After cradling my ear into my shoulder for a few minutes, I really couldn’t take it anymore. I had tried to be patient, but I just couldn’t do it.

”Um…” I said hesitantly, “can you please stop screaming? It hurts my ears.”

The boy looked at me incredulously. “I’m hurting your ears,” he repeated in that way that tells you when someone a) either doesn’t believe you or b) doesn’t care. He started talking loudly again just to spite me, screaming over to the girls in the corner, and I held my ears closed.

“Please,” I said again. “I’m sorry to have to ask this, but can you please be quiet? I have sensory processing disorder.”

The boy wrinkled his nose at me, looking like he’d just smelled something bad. “Sensory what?” he said.

“Sensory issues,” I said finally, knowing he wouldn’t understand the term sensory processing disorder. A lot of people don’t. “It means that loud noises hurt my ears.”

The boy looked interested now. “So that means it hurts when I do this?” he asked, leaning over. He came really close to me and screamed directly in my ear. I jerked away, holding my ear, a lump in my throat. I had been through bullying and teasing before due to my cerebral palsy, but this was plain mean-spirited about my sensory processing disorder.

The boy started pointing and laughing at me while I blinked back tears, trying to recover from the assault on my ears.

My goal here is that we need people to understand what sensory processing disorder is. It is real, it is important, and it is not the fault of the people who have it.

We need to raise awareness. Are you ready? I am.

Facing My Feelings Toward The Store Employee Judging Me When I Went Through Serial Casting

 

To the store employee who chose to judge a book by its cover:

I was walking with my family in Home Depot to get some supplies. I had just finished another round of Botox injections and my physical therapist decided I needed to be casted. (One of the worst experiences.) The casts were supposed to “support” the Botox injections by ensuring that my legs would continue to be loose. I was re-casted every week for about two months.

The sandals I had to wear to school, the stares and the casting process itself were pretty uncomfortable, though I was no stranger to most of those things. AFOs, which I wore until last year, need to have a mold. I get stared at a decent amount, both with AFOs and without, and I’ve pretty much given up on stylish footwear, but the sandals let in dewy grass when we went outside for recess.

Some kids at school thought I had broken my legs, though obviously, I was walking without crutches with the casts on. But no one really said anything about it. I got tons of questions, but it wasn’t really a big thing whether my legs were “broken” or not.

In the store, I was holding my dad’s hand. I tend to hold hands with someone in public places because I feel overwhelmed if I don’t, and I’m also more of a fall risk if I don’t hold on to someone or something.

As we passed by an aisle, a female employee was arranging a display. As we passed by, she said rather loudly, “Gee, you broke both of them? Good gracious, be more careful.”

I was so embarrassed. I was mortified. The casts were out of my control completely. The casts and Botox were not what I wanted. It’s not my fault that I was born with cerebral palsy, and a mild version at that. I was and am not an attention-seeking child, so to be called out like that was pretty much my nightmare. The way she phrased it made it seem like I was ungrateful, in a way, and didn’t care what happened to my body, which couldn’t be further from the truth.

Also, she couldn’t be more wrong about how careful I was. I am as careful as possible (unless my pride kicks in), and there was no way I’d do something dangerous enough to break my legs. Besides, athletic activities are not really my fortè.

All I wanted was to fit in. And a few other customers looked my way, which caused me to hang my head. I felt embarrassed for something I couldn’t help.

What the lady didn’t understand, and what I have a better grasp on how to explain now, is that cerebral palsy (CP) falls on a spectrum. Not everyone with CP uses a wheelchair, and not everyone with CP is ambulatory. A large chunk of society has an image of what a disability looks like, and that’s not true in all cases. My cerebral palsy is mostly invisible.

Plus, not many people walk around in casts unless they have broken a limb, although casting is more popular now as a treatment after Botox for cerebral palsy. She’d probably never seen a kid like me, although it was really none of her business what happened.

My dad acted as my advocate and told the lady that “not everything is as it seems.”

I wish I hadn’t been embarrassed that day in Home Depot. I wish I had kept my head up, because having CP is nothing to be ashamed of. I was pretty shy back then, and it hurt to be judged for something I really couldn’t help.

I’ll be honest — I used to resent the employee for what she said. The embarrassment was hard to shake. I don’t feel angry at her anymore. In the end, I’m glad she made me aware of the perceptions that society can sometimes have.

People need to know that cerebral palsy has a spectrum, invisible disabilities are real, and “not everything is as it seems.”

The Language Sometimes Associated with Having a Disability

    I am all too aware of the power that words can hold. I began writing about my experiences living with cerebral palsy (and eventually, anxiety and sensory processing disorder) when I was seven years old. I have been teased and bullied, belittled and mocked—and on the absolute opposite side of things—praised and comforted, and been given kind feedback and validation. Yes, words are powerful, for better or for worse.

    This year, my eyes have opened more and more to this fact. After being referred to by a not-so-nice word describing my disability during an interaction with my teacher and having joined The Mighty—through which I’ve read countless articles furthering the debate between identity-first (i.e., disabled person) or people-first (person who has a disability; person with a disability) language—I have discovered what exactly is my “pet peeve” surrounding language that describes disabilities (and mine, specifically).

 

So I compiled a list of words that people often use to describe cerebral palsy—and disability in general—that I don’t care for. And no, I don’t believe that I am being too personal. It is okay that I don’t like how people sometimes talk about my challenges. Also, this list may not offend everyone with CP. 

1. Handicapped 

Definition: unable to use part of your body or your mind in the way that most people do because it has been damaged; to place at a disadvantage 

I have always had an issue with the word “handicapped”. I don’t know why exactly; only that the word rubs me the wrong way. From what I’ve seen, I’m generally alone in my dislike of this word, but it irritates me to no end. I feel that the word “handicapped” implies that my disability—cerebral palsy—holds me back, when that is anything but the truth. My having cerebral palsy has allowed me to meet some of the most amazing people on the planet. I have been able to write articles about my experiences for The Mighty, the Cerebral Palsy Foundation, MSN, and have been able to start my own blog. I have discovered truths about myself that may not have been possible had I not had CP. I could go on, but I digress. The point is, most of the time I am proud to have cerebral palsy. It definitely isn’t easy, and it causes me to struggle physically, but I am not held back because I have cerebral palsy.

Another reason why I have a problem with “handicapped” is because there is such a negative connotation to it. You always hear stories of people complaining because so-and-so parked in the “handicapped” parking spot—even if they have a placard—or because they don’t “look ‘handicapped’”. I know I have been told this. The reality is that invisible disabilities are more common than people think. And yes, it definitely irritates me when people who don’t have the placard park in a reserved space—but that’s not me judging their disability, it’s me being disappointed that they choose to park in a space that they don’t have the tag for.

2. Retarded

Definition: less advanced in mental or physical capacity; foolish or stupid

I might be wrong in saying that everyone in the disability community hates this word, but I certainly do. It is highly offensive to someone who has an intellectual disability, and frankly, I don’t like being called this word either.

My cerebral palsy does not affect me cognitively. The only areas that my CP affects are my legs and the dexterity in my hands. It might contribute to my sensory difficulties at times as well, but I don’t know that. 

Nonetheless, some of my classmates seem to think that the word “retarded” describes absolutely anyone who has a disability, regardless of the type or how offensive that the word is now regarded to be. 

I was called “retarded” after not understanding a suggestive reference. (To be honest, I’m pretty sheltered from a lot of the things that other teenagers tend to talk about, so there are plenty of times where I’m in the dark.) 

I’m sad to say that the words “ __tard”, “retard”, and “retarded” are pretty quick to come from the mouths of most teenagers as an insult when others do something wrong. Most of my classmates are aware that I need extra help physically, but that doesn’t prevent some of them from using this word anyway. 

The word “retarded” is outdated and extremely hurtful. Please be mindful of that, and the fact that some challenges are invisible. Err on the side of caution.

3. “sped”

Definition: an insult when someone does something deemed ‘idiotic’

Ughhh, this word. Students devised this word from the self-contained “special-education” classes. However, younger people now refer to others as “special-ed”, meaning that they should be in those classes because of their inability to do something. Of what that something is that’s required, I have no idea. The ability to fit in? I don’t know, and I don’t care.

No one should use “special-ed” or “sped” as an insult. It’s not insulting to be in those classes. There are people who need special education classes, and that’s not a bad thing. 

I have been called “sped” because of the way I walk, because I tend to lose my balance, and because I don’t understand so many of the jokes that many others my age use. 

Most kids think that “sped” is just another insult that is commonly used in my school, but it’s not. It is an offensive term that subtly puts down people who do have intellectual challenges. One boy literally jumped out of his chair to yell “Sped!” out at me when I asked a question. It makes me grit my teeth in annoyance every time I hear it. I am the first to call my classmates out when they use this type of language, and my teachers have started to do so as well. 

4. “Spaz”

Definition: one who is inept; to lose physical or emotional control

“Spaz” is an abbreviated word that means “spastic”. Because “spaz” is not a medical term like “spastic”, many people think it is just a word used to describe someone who is clumsy. Oftentimes, that is what “spaz” is used for, but it’s offensive.

“Spastic” is a medical word that is used to note how tight something is. For example, my hamstrings and most of my leg muscles have a lot of spasticity. The type of CP I have is spastic diplegia cerebral palsy. In fact, on average, 77% of people diagnosed with cerebral palsy have spastic CP. 

With that in mind, using “spastic” or “spaz” with a negative connotation offends quite a large number of people. 

The only experience I have hearing the word “spaz” comes from my seventh grade year. A boy repeatedly dropped his pencil. When he picked it up for the third time, he said the words in a tone full of scorn that I will never forget:

“I’m such a spaz; I have cerebral palsy.” He laughed so hard while I froze, my anger growing rapidly.

Because that boy didn’t have cerebral palsy. He didn’t have an IEP. He didn’t have a physical therapist pull him out of class. He didn’t fall down twice a week. 

And he thought that cerebral palsy was just dropping a pencil and picking it back up.

Anyway….

“Spaz” should not be a word used to pull someone down. It’s not bad to have spasticity like I do, like approximately 13,475,000 people have globally. 

The people who use the words “spaz” or “spastic” to insult each other have no idea what having spasticity really means. I’d like to change that.

5. “Crippled” or “crip”

Definition: severely damaged or malfunctioning; out of working order; to make useless or powerless

I could go on and on with this word. I absolutely hate it. My teacher referred to me as “crippled” to make another girl, who had a broken leg at the time, and no physical disability, feel welcome. I am not malfunctioning. Some people could argue that my body does not work the way that a human body is supposed to, but I don’t care. God designed me—and every other person with CP—this way, so it is the way I’m meant to be. I am not out of working order. No one who has challenges is out of working order. I can still do plenty of things, regardless of whether I am slightly more limited in the physical aspects. Lastly, no one is useless. I was put on this Earth for a reason, and my belief is that reason is to help others and speak for people with disabilities who cannot speak on their own. The only thing I am “crippled” by is the people who tell me my worth. A lot of people think that worth is determined by what you can do physically, but nothing is further from the truth. No one’s worth is just one thing. I am not my legs, and no one else is, either.

6. “Freakazoid”

Definition: a person who is physically deformed; a freakish creature; to behave in a wild or irrational way

I was told that I was a freakazoid by a kid when I overreacted to a touch. I have sensory processing disorder, so touch feels different to me than it does to most people. My cerebral palsy also causes me to have hypersensitivity, which is why it hurts sometimes when I am touched. 

You never know what differences someone may have, and how those differences may cause someone to act. Just because someone acts differently does not mean that they are freakish or behaving irrationally. 

7. “Wrong” (as in, “What’s wrong with you?”)

Definition: Unwanted; not in conformity

I cannot count how many times I have been asked, “What’s wrong with you?” From what I’ve read and heard, that is (unfortunately) a common question in the disability community, and it shouldn’t be. 

My CP is not an unwanted quality—at least not for me. While I am frustrated with the lack of control I have over my legs, that doesn’t mean I would want to change the fact that I have cerebral palsy. I wouldn’t. 

While people who do not have a disability (sometimes referred to as the able-bodied community; more on that later) might view physical disabilities as undesirable or “wrong”, I certainly don’t. 

And yes, having a disability might not be considered in conformity, but it’s not that far off, either. Given the fact that 26% of Americans have a disability, it’s not like it’s rare to have a physical or mental difference that goes against the norm (whatever that is). 

No matter what anyone might tell me, having CP is not wrong. If you’re curious about a disability or difference, find a different word to use than “wrong”. 

8. “Able-bodied” vs. “Disabled”

Most people who have a disability are divided about the language they use to express their disability. Basically, language differs from person to person. For example, some people might not find the word “crippled” offensive. And as surprising as that is to me, those same people might not understand why I do find “crippled” offensive. 

The same is true for the way having a disability is expressed as a part of identity. Most people who know me can tell that I prefer what is called “person-first” language. This means that I prefer someone to say, “Caroline is a person who has a disability” rather than, “Caroline is a disabled person.”

While cerebral palsy is undoubtedly a part of my identity, it’s not the only part. And I don’t really consider myself disabled. Yes, I struggle—but my physical ability (or lack thereof) is not my only ability. So I’m not entirely disabled, in my opinion. No one is.

That being said, I respect everyone’s choices, and just because I may see a situation differently than someone else, when in their company, I will abide by their choice. 

Additionally, I have trouble calling the people who don’t have a disability “able-bodied”. Because my body is still able to do things. While I understand this is not always the case for everyone, I am able to breathe and to blink and to speak and to walk, etc. The way I see it, the job of the human body is to house a soul. 

Being disabled—if that is the way one chooses to see him- or herself—is not a bad thing. But having a disability instead of being disabled is the way I would rather see myself.

And I probably won’t like calling other people “able-bodied”. It makes me uncomfortable.

I am proud of who I am, and I like myself enough to use the language that I’m comfortable with. To my fellow people who have a disability, I would encourage you to use the language you are comfortable with, too. 

To those who sometimes struggle finding the words to describe a disability, I would advise you to talk to someone who does have that challenge. I know that I personally find the above words offensive, but that might not apply to everyone. 

Above all, just be kind—because there are disabilities that are invisible.