Living 'Between Two Worlds' as a High School Student With Cerebral Palsy

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It wasn’t until I spent a three-hour university workshop examining “advanced organizers as a tool for ascertaining prior knowledge” that I managed to come up with a decent metaphor for my life at school. This metaphor synthesized the sometimes entirely disparate elements of my school experience. Namely, being the “typical girl” and the “girl with the disability.”

I was the center section of a Venn diagram — the jargonized term for the two intersecting circles used to compare and contrast stuff. I was wedged uncomfortably in the middle – I wasn’t a fully-fledged “special kid,” (the most innocuous collective noun to be found in the extensive invective of the teenage girl), but I didn’t always have the social skills and prodigious academic ability to blend seamlessly with the “normal” kids at my school. It was harder because I knew my high school identity was never going to be a static entity. I went between being the instrumentalist, the singer, the Francophile – the “normal” (if slightly nerdy) girl – and having moments where I would make an error in class because of my cerebral palsy, and I’d feel my carefully constructed veneer of normalcy start to slip just a little. So I found myself in that painfully transient space between typicality and difference, with heightened insecurities and no real sense of identity – a pretty dangerous combination in the social minefield that is high school.

Even though I tried my hardest to diminish any reference to the “girl with cerebral palsy side of myself at that point in my life, some days trying to juggle those two sides of myself – this dichotomy of ability and disability – was almost too much to take. Some days, I was almost tempted to ‘fess up about my CP just because it seemed easier. At least I’d fit somewhere, I told myself. Sure, I might have ended up on the bottom rung of the social ladder because of it, and sure, I might have had to deal with a confronting, explicit and entirely unique brand of stigma exclusive to teenage girls, but at least I’d have a place somewhere. Or it could have gone the other way entirely (I doubted it then, I doubt it now, but it was possible), and it might have been a total non-event. I might have worked myself up for nothing, and life might have gone on as normal. Well, as normal as high school life could be, anyway.

I’m obviously never going to know what would have happened one way or the other, but I know that – despite the challenges and fatigue and frustration of having two “sides” in high school – I learned more about myself and what I am capable of than I thought possible. And that, more than anything, gave me an identity.

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What I Learned From First Tying My Shoes at 18

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“I did it!” I eagerly message my friends and family. I did what most people do every single day for the first time at the not-so-young age of 18. I tied my shoes. You see, as a person with cerebral palsy, it’s not always the big things that offer the largest challenges to me; sometimes the small things in life can be my biggest obstacles.

My name is Brad, and I have left hemipeligic cerebral palsy. Among the circle around me it’s often said my condition is “hardly noticeable,” which, you know, they kind of have a point. I can stand on my two legs, I can walk, I can run (even though I’d prefer not to), I can speak my mind well (even though my mother would prefer I didn’t). I guess it makes sense my condition isn’t noticeable at first or even second glance. However I struggle with the small things. The things most do in seconds on a day-to-day basis may take me minutes on the same day-to-day basis. Things like tying my shoes seemed impossible until at the age of 18 when I found my own adaptive way of doing it.

I adapt in almost all of these tasks my average day may face me with; most of it comes with the use of my left arm instead of using my hand to grasp objects. Sometimes I even slide down the stairs on my butt if the railing is on the left side of the staircase. I try to make sure everything is on my right side of my body when possible; however, that being said, it’s important not to ignore that side of my body. I’ve fallen in love with my way of doing things, and it’s still important to use the left side of my body to get in the exercise I need to keep my muscles stretched (and my mom, who’s an occupational therapist, happy with me.)

No matter your condition or situation, I believe it is vital to fall in love with your way of doing things. Every small victory is still just that: a victory. No matter how big or small, you’re continuing to move forward. I tied my shoes, and I’m beyond proud of myself. What’s next for you?

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4 Things I Want People to Know About My Cerebral Palsy

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Having a very visible disability like cerebral palsy, I often notice that people make assumptions about me because I walk differently and I use a walker to get around. Throughout life I have been labeled everything from “charity case” to “crippled” as well as given personality traits and physical limitations by people who don’t even take the time to get to know what is beyond my disability. Here are some things I want everyone to know about my life with cerebral palsy.

1. Do not limit me.

Since I have a disability that challenges me physically, people are often quick to limit my abilities. My disability does not mean I do not have the ability to do things, but my abilities may just be a little bit different. I know what I can do and what I cannot, which means that what I decide to do is up to me. Please do not automatically rule me out on participating in various activities or assume I cannot do things the average person my age does. I can actually do the majority of things others have assumed I cannot do. I may have to walk a bit slower or take some respites, but I will find a way to do what I want to do. There is no reason to give me limits. 

2. I am just like you.

Having cerebral palsy does not make me that different from people who do not have cerebral palsy. Yes, I use a walker and my gait looks different than yours, but aside from that I am exactly the same as you. In fact, 90 percent of the time I forget I even have a disability because that is how “normal” my life is. I am a full-time college student, I have had jobs, I go to yoga, I like to listen to music and dance. I go on walks with my dog, I am in a sorority, I have friends, I get stressed about the same things everyone else gets stressed about at my age, I drive myself everywhere and I am incredibly independent. So just because the way I walk may not look the same as the way you walk, it doesn’t mean I am different from everyone else. If you take that small physical component away, you can see me for who I am — a human being. 

3. Don’t feel sorry for me.

If I had a dime for every time I heard a stranger tell me something like, “Good for you getting out of the house while you are dealing with all of this,” I would definitely be sitting on a nice sum of money. While I have overcome a large amount of challenges, my life has never been a sob story and it should never be seen that way. I am happy and have always been. If people think they need to feel sorry for me because of the way my life is, I actually feel sorry for them. My life is nothing short of spectacular, and having a condition does not alter that. Yes, there have been bad days and several challenges, but what person doesn’t have a bad day or a challenge once in a while? If challenges I have overcome can inspire or motivate people, then I am happy to hear that. However, my life should never make people feel sad or sorry for me. I have the best life I could have ever asked for, and no one needs to apologize to me for it.

4. My disability does not define me.

Cerebral palsy is obviously a part of me and my life, but it does not define who I am and I will never allow it to do so. Cerebral palsy has had an impact on my life in many ways, both negative and positive. However, it is not a label I should be permanently branded with for the rest of my existence. I am not defined by my disability, just like I am not defined by the color of my hair. I am defined by my interests, the things I like to do, and the little things that make me tick. So think before labeling me with terms such as “crippled,” “disabled,” or “handicapped,” because I am much more than those things and I will not let them define me as a person.

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Why We Need More Children's Books About People With Cerebral Palsy

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As of late, the importance of representation in the media has been a popular rallying cry for minorities of all types. Women call on the Bechdel test to determine the level of female representation in movies and TV shows. Last year, the hashtag #OscarsSoWhite drew attention to the dearth of people of color eligible to win the prestigious acting award.

Calling for better minority representation has also extended to those with disabilities. TV shows like “Degrassi” and “Glee” have depicted young people with physical disabilities who participate in everyday life with friends who care about them, include them, and are sensitive to their limitations. Arab comedian Maysoon Zayid has performed all over the globe doing stand-up related to her life with cerebral palsy. In her TED talk, she described how she auditioned for the role of a person with cerebral palsy but was turned down in favor of an able-bodied actor. When she asked why she wasn’t chosen, the casting director told her they were worried she wouldn’t be able to perform some of the actions for which the script called. This baffled her — if she, a woman with cerebral palsy, couldn’t perform the actions of the script, maybe the script didn’t accurately portray life with cerebral palsy.

Some children’s authors and illustrators have decided to take the battle for representation upon themselves and pen books about children with special needs and disabilities, to help young people learn the facts about disabilities and normalize the idea of having friends and peers who look and behave differently. Especially for cerebral palsy, which can vary in severity and symptoms, representation in children’s literature can help able-bodied children recognize and normalize disability in their fellow classmates.

Shaila Abdullah wrote a book in 2014 called “My Friend Suhana: A Story of Friendship and Cerebral Palsy” to help children understand how to be a good friend to someone living with CP. In the book, an able-bodied narrator Aanyah shows how she loves and cares for her nonverbal best friend Suhana, who lives with CP, and how Suhana has just as many abilities as disabilities. The author and her 10-year-old daughter (on whom the narrator is based) volunteer weekly at a center for children with special needs, so the two of them wanted to demonstrate in a book that love and friendship transcends disability. This heartwarming books is a must-read for any child to help foster compassion and understanding.

Aaron Philip also wrote an autobiographical story called “This Kid Can Fly: It’s About Ability (NOT Disability)” about his own life with cerebral palsy. A 14-year-old African American native of the Bronx, Aaron is a disability activist and advocate for helping the general public understand the reality of living with CP and how to help others with the condition. His memoir, written with the help of Tonya Bolden, delineates his life story and how he has embraced his different life.

By including books with a healthy representation of children with disabilities in schools, libraries, and homes, we can help normalize CP and make children more open and compassionate.

Read more on Alan Rasof’s blog.

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Why I Relate to 'Sherlock' as a Person With a Disability

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I’ve never been able to hide my disability. I’ve never wanted to hide behind it either.

I walk with aids just like Sherlock Holmes walks with Watson down Baker Street. I wear ankle braces like the famous detective wears a deer stalker. My poor balance is not an option; my abnormal gait is not a disguise.

Cerebral palsy is not a coat I can shrug off any time I feel like it. My condition is a thread woven through the very fabric of my being. I’ll never have the luxury of leaving my canes behind in a London restaurant. I’ll always be the patient, never the doctor. That’s life.

But they say that a reader lives a thousand lives and I’m inclined to say the same about a TV viewer. Acceptance is a wonderful thing, always hard-won. Inclusion is a lovely thing, but so is respite.

As Watson’s psychosomatic limp disappeared, I ran with him. I chased a black cab carrying a criminal. I solved the aluminum crutch case too.

This week’s episode of “Sherlock” saw the brief introduction of one Faith Smith. She was a reflection of John, the Afghan war veteran with his post-traumatic stress disorder. Unfortunately, I identified quite strongly with this particular client, limping along, living in isolation, with her fair share of scars. But my disability is a long-standing part of my identity, not merely a temporary alias. I’m not Sherlock’s sister.

I’m just a fan, getting by with a little help from my friends.

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