It’s March and Cerebral Palsy awareness month.
Cerebral Palsy Awareness Month is all about spreading awareness and celebrating those with Cerebral Palsy. This month is used to advocate for better programs for people with CP. As an advocate for disabilities, l love this month, and think it’s important to highlight some of the accomplishments of people with Cerebral Palsy.
In 2006 a parent run organization called Reaching For The Stars started National Cerebral Palsy Awareness Day on March 25th. Those parents saw that other conditions had an awareness day but not Cerebral Palsy.
Despite CP being the most common childhood disability, there wasn’t enough attention focused on it. In 2014 CP Awareness Day was created and helped get the word out about all the different people living with this disability.
Cerebral Palsy Awareness Month is very important to me! Being an advocate for the disability community has allowed me to share my story, as well as to hear other people's stories .
One of the positive things I've started to notice is that the disability community has had more representation in books and in the media in recent years. When I was little there wasn’t that much available related to disabilities in the world of fictional books or TV shows. But lately, I’ve noticed a change, which is why I’m so excited to tell you about some of my favorite books and a tv show that represents Cerebral Palsy.
The first book is called Out Of My Mind. This book was written by an author named Sharon Draper. I read this book in 6th grade and fell in love with it! The main character Melody, who is the narrator of the story, has CP and is completely non verbal. While I still have the ability to produce verbal speech, I related so much to this character.
In the book Melody gets doubted a lot . People see her physical state and assume she’s not there mentally. Kids in her school do mean things like laugh at her. They leave her behind on the way to a competition because they think she has nothing to contribute. I definitely have been doubted in my life and it can be very frustrating to continually have to prove yourself to people. But just like me, Melody won’t give up.
Even though her peers don’t believe in her abilities, she works hard to prove she belongs. This book truly depicts what it’s like growing up with a physical disability where people judge you from your outward appearance.
In 2021 Sharon Draper came out with a sequel. I was so excited when I heard this news. The sequel is called Out Of My Heart . In this book Melody goes to camp and makes friends with other disabled people, for the first time.
When Out Of My Heart was released, Sharon Draper had a Q&A at the Woodlands Foundation. The Woodlands is a camp for special needs kids where I attend a music camp every summer. I love it there! The Director of Arts and Music asked me to introduce Sharon for this event. I was beyond thrilled as Out Of My Mind was the first book I could truly relate to. Not only did I get to meet Sharon, but I introduced her at the event. That was incredible.
In the Q&A Sharon talked about her journey as a writer. She started out as a High School English teacher. Sharon asked her students to write papers all the time. One time one of her students said “why don’t you write something” she accepted that challenge. That’s when her writing journey began.
Today she has published several books and is a compassionate writer. During the session I asked many questions, one of them was if Sharon knew someone with CP and how did she write such an accurate portrait of someone living with CP. Sharon told me she did in fact know a few people with CP and she wanted to represent them in this book. Sharon also told me that if I work hard, I could be a great author one day. That made me so happy, especially coming from an author whose books mean so much to me.
One of my other favorite authors is Sara Pyszka. Sara is a local Pittsburgh author living with Cerebral Palsy. I met her through the Woodlands. She is in a wheelchair, and uses a head switch for typing which is an added challenge.
Sara has written 4 books, three fiction and one non fiction.
After reading her books, I felt truly connected to Sara as she seems to have had some similar challenges as me. We both have had people who weren’t able to look past our disability, but Sara was able to make that into something positive by sharing her experiences through her writing.
I discovered Sara’s book in 2017 called Dancing Daisies. It is the first book in her fictional series. This series is about a teenage girl named Brynn who’s just living a normal life despite having Cerebral Palsy.
In this book Brynn goes to Camp Lakewood for the first time. After her two best friends from back home betray her, she is ready for a new adventure. This book really shows what it’s like being a teenager with Cerebral Palsy and I was thrilled to finally read an adult book with a character like me. I like that Sara makes Brynn go through drama that a typical teenage girl would go through instead of just making the drama revolve all around her disability. I think it’s important to realize that people with disabilities encounter situations that a normal person would also encounter.
There are two more books in this series that follow Brynn’s journey . All the books show Brynn’s struggles with trying to be a normal teenager with CP. Sara used her own personal experiences to tell an entertaining story that can also be educational. I can really relate to Brynn because I’ve had some of the same feelings as her.
Sara also wrote a memoir of her life called Inside My Outside. This book is really eye opening and powerful. Sara talks about what it’s like having assistants help her in her daily life. She shares some of her heartships of relying on people for everything she needs or wants to do. I definitely share that same frustration! Even though I’m so thankful for my family and everyone that helps me all the time. Sometimes I get tired of needing help 24/7. This makes me feel like I’m not my own person, but I’m working on having a more positive outlook on that.
Sara is an amazing author and I really look up to her. Make sure you go check her books out on Amazon.
While I love to read, I also like to watch TV. One of my favorite shows ever is called “Speechless“. Although it was cancelled after three seasons, it can now be watched on Hulu. “Speechless” is about a boy with Cerebral Palsy named JJ and the Demio family.
This show was created by Scott Silveri who grew up with a brother that had CP. The show was based on his upbringing. JJ is the oldest of 3 kids. He has a brother named Ray and a sister named Dylan.
An awesome thing about “Speechless” is that the actor Micah Fowler who plays JJ, has CP in real life. I love to see disabled actors playing disabled characters. This aspect makes the show more relatable knowing that the actor himself has been through some of the things that JJ goes through. Micah Fowler is an extraordinary actor and I follow him on Instagram to keep up with his career.
The show is hysterical and one of the nice things about it is that the focus is on the family as a whole instead of just JJ’s character and his disability. Dylan and Ray often poke fun at each other, sometimes they even poke fun at JJ.
It’s annoying to me that people think that if someone’s sibling has a disability they should be treated differently. My siblings and I have a normal sibling connection. We like to tease each other, but we also love to hang out or go places together. Even though sometimes we get on each other’s nerves, that’s a pretty typical sibling relationship.
JJ goes to a typical high school and hangs out with typical kids. He also has a one on one aide named Kennith. They have a very special relationship and like to talk to each other about personal matters, which reminds me of my relationship with my high school aide. Despite her being older than me, she is one of my best friends. This show definitely portrays the humorous side of having a disability, I certainly appreciate that!
These are great examples of representation of life with Cerebral Palsy. Even if you don’t have a disability, I encourage everyone to check out these entertaining stories. I hope to continue to advocate for the disability community through my writing and my art. I’m proud to be a CP warrior.
Happy CP month y’all!