Sketch of a beautiful woman.

4 Things I Want People to Know About My Cerebral Palsy

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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Children reading at story time.

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

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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Dr. Watson and Sherlock Holmes from the TV show 'Sherlock.'

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

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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Silhouette of woman, close-up.

7 Lessons Cerebral Palsy Has Taught Me

They say life is what you make of it; I can’t agree more. We can easily let our struggles control our life. I live with a disability by the name of cerebral palsy. I admit it’s not easy, and it can be easy to just focus on the negative aspects of life with it. By doing so I believe it will just make things worse. I have learned that it helps to have a positive attitude.

I believe CP has helped me see life differently. It has taught me some things.

1. Be compassionate. Since I am very aware of how it is to struggle physically, I believe I have compassion for other people struggling physically.

2. Enjoy the simple things in life. My disability prevents me or makes it difficult for me to enjoy certain activities. I came to terms with it by enjoying what I’m able to enjoy.

3. Be creative in doing tasks. I can’t do most tasks in the traditional way. I have to come up with a new way to perform them.

4. Be stubborn, or better yet determined. It can be easy to get discouraged when I have difficulty accomplishing something, but I either have the choice to be defeated by it or continue pushing until I succeed.

5. Pity is useless. Throughout my life I have received pity from people because of my disability. It only made me feel like something was wrong with me.

6. Content of character is more valuable than physical content. Most people see my disability first, instead of the person I am. Because of this I have learned to not make assumptions about a person based on their physical characteristics.

7. Have resilience. Life with a disability can be challenging in many ways, but one gets used to it. I believe this has helped me to have resilience for other challenges.

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Alexis Nichols.

How I'm Breaking the 'Disability Mold' to Be Myself

Living a life like mine, you get to experience so much joy, so many wonderful opportunities and exceed so many expectations. I wouldn’t trade my cerebral palsy for the world! I am truly thankful for the opportunities I’ve had to educate people, and being able to have a positive impact on other people’s lives. I have an understanding of a different side of life (the medical world) that most people wouldn’t, which in turn has made me appreciate the simple things in life that are so often taken for granted.

I know some may look at my life and say I’m unlucky or feel sorry for me, but I feel sorry for people who don’t see my life the way I do. It is a blessing worth every hardship I’ve ever gone through, because I know when I go to sleep at night that I have changed the way society views people with disabilities, and I am a leader and advocate in this very big world that will one day be changed. I know my purpose in life. I know why I am here, and to me that is a gift far greater than anyone could ask for in a lifetime.

My cerebral palsy was a birth injury, so it’s the only thing I know. In the same way as most people know how to get up and walk, I know how to get up and walk with my walker. I don’t feel like I’m missing out on anything because this is the only way my body knows. Yes, it may look hard to someone on the outside, but for me, it’s just my “normal.” Sometimes people will ask, “Is it hard to walk with your walker?” and my response is “It’s a whole lot easier with it than without it!”

I started using my walker at age 2, and it was then that I started to change some people’s perceptions of people with disabilities. Imagine a 2-foot tall child with a bright blue frame around her as she made her way into the grocery store. How often is that seen? Not very often. Humans tend to stare when they see something uncommon, so just by having people look at me I started to change their perceptions.

Anyone who was lucky enough to pass me on the street, or knew me well enough to know my middle name, always mentioned my never-fading smile. I had what most people would think is a reason to be sad and feel bad for myself, but I didn’t see a reason not to smile and laugh. I believe that you define your disability, your disability doesn’t define you! You have the power and ability to create whatever image of it you would like it to be; it’s all in the way you carry yourself, through the actions you show and the words you speak. That’s why I embrace questions and smile at the stares, knowing not everyone has seen or knows a person with a disability. I want to educate people, letting them know that having a disability is not a bad thing or something we should be afraid of!

I think sometimes we are conditioned to not ask questions, to not talk about a person’s disability because it’s “bad,” or if we do it means that’s the only thing we see in them. But I don’t believe that at all. We need to stop being so afraid of the word “disabled.” We need to stop treating it like it’s a bad thing and that no one should talk about it, because how else are we going to make change?

I also think many limits are placed on people with disabilities, some unknowingly. Mainly, this is due to preconceived notions society has about people with disabilities. That if you have a certain disability then you “must act this way” or you “must not be able to do this.” I call that a “disability mold” and have not conformed to it at all.

Growing up, I saw no reason for me to be treated any differently than anyone without a disability; therefore I created equality for myself. I always did everything everyone else did without ever giving my walker a thought. Or maybe I did, and just didn’t care… I tried out and made the cheerleading team, I did horseback riding and went surfing, I auditioned for parts in plays not written for people in walkers… I went out into the world unashamed of who I am to show that no matter your circumstance, you have the ability to live the life you want.

There are many ways I have chosen to live my life that some people in the disability world don’t agree with. One is that I do not wear AFOs (leg braces) and I wear heels most of the time. Apparently, there’s this unwritten rule somewhere that if you have some issues walking, you probably shouldn’t wear heels. That still hasn’t registered with me yet (ha ha) and if you had something to hold you up as you walked, I bet you’d walk in heels, too! While I may walk slightly more appropriately in AFOs, I have never felt comfortable or confident in them. They hurt when I put them on, and when pain interferes with quality of life and confidence is taken away, they really are no help at all.

Most people might just agree with the experts and go on with their lives, but not me. It doesn’t mean I am not respectful of their opinions or never listen, it just means I have learned I have the power to say “no,” and live in whatever way works best for me at the time, no matter what anyone else says.

Sometimes I think people get so caught up in living the life other people think we should live, the one society expects for us, that we forget we are in control of our own life. It is OK to say no, to stand up for what you believe in and to make the life you want.

In this life, people will tell you that you can’t. That you won’t. That you will never be able to accomplish your dreams. They will label you and place limits on you based on what you are given and how they think you should live. It is up to you to defy them. It is up to you to say “OK, this is the life I have been given and this is what society says I should be, but if I don’t want to live that way, I don’t have to.”

I have proven that time and time again, and I am here to share my belief that it can be the same for you. Rely on your sense of self to know what you are capable of and how far you can go. Just because you are given a certain circumstance with a predicted outcome, that doesn’t mean it’s how it has to be. Your life starts with you, and you have the ability to make it anything you want it to be.

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When My Daughter With Disabilities Said She Wants to Be a Published Author

As anyone who has followed my writing for any amount of time knows, we have long had our struggles with the public schools refusing to accommodate our children’s disabilities. Much of my more recent writing was to express this frustration to help raise awareness of the problem.

Since we decided to homeschool the children two years ago, I’ve mostly devoted my time to teaching and researching ways to further help my children at home. I’ve also become a writer for The Mighty, elaborating on certain aspects of what it’s like to live with disabilities.

My daughter Mariah has struggled with emotions related to living in an orphanage for the first four years of her life. She has also been incredibly frustrated by how she was treated while she was in public school. She felt singled out, different, and misunderstood.

I am so proud of her for wanting to write about her experiences. Owning your story is a huge part of the healing process. Mariah wants to “Be a famous author!” She has already written a lovely recounting from her point of view about her life prior to being adopted, what it was like during the process and after she came home.

Mariah plans to write more books about the other disabilities she lives with so children can gain a better understanding of their peers. Some of her plans for future book titles include:

“I Have Dyslexia!”

“My Legs Aren’t Broken, These Are AFOs”

“Kids Have Strokes, Too”

Please help by sharing her video so we can find a publisher who can help her reach her dream of becoming “a famous author!”

Here is a preview of her book about her adoption story.

This story was originally published on The Johnson Journals.

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