BY GILLIAN JASPER, Chapel Haven PAVE Intern

To me, the topic of Cerebral Palsy (CP) is important because it is a part of me, but does not have me!

When I was younger, I really disliked the use of labels, such as “disabled” or “disability.” As I got older and understood my disability more, I learned that it is ok to say “this person has a disability,” and it is also ok to say “this person is disabled.” I wanted to take a moment to explain that having a disability and being disabled are two different things. Saying “this person has a disability” means the person may walk differently, or look different. On the other hand, saying “this person is disabled” means the person is physically unable to do things. I want to also say that before I came to terms with my disability, I felt like I needed to be fixed, but when in reality, I do not, and I also felt sorry for myself or as if I couldn’t do as much as I thought I could.

In writing this article, I hope to inform and educate people about this condition. 

Even though there is still research to be done on the topic of CP, I think society is more understanding of people living with it. I am glad to have had the opportunity to write this article, as it gave me some relief, and I feel like I can serve as a voice for others that live with it. I think a common misconception about Cerebral Palsy is that it affects everyone in the same way, but later in the article, I state that it does not. 

I think how people go about asking if someone has CP matters because we are people too, and we have feelings! I would prefer someone ask me what my disability is, rather than assuming I have a disability or because I do things differently. For example, it was really hard for me to tie my shoes, so I used leather to learn how to tie them. I have to pretty much change how I do things, given my ability. I am going to throw in a little basketball talk. When I go to shoot a basketball, my left hand is on the side of the channel of the ball, behind it, and my right hand is there to assist. It may look different, but at least, I made the shot! 

I prefer to be asked directly by someone about my condition because I think I would be able to tell them best how it affects me, as I live with it, and the person will get the information firsthand. It was not so easy for me to disclose that I have a disability, I had the fear of judgment because of my condition.

 I did not have to disclose it, but made the decision to do so. People in general don’t have to disclose their disability. 

Cerebral Palsy (CP) is a group of disorders that affects a person’s ability to move and maintain balance and posture. It is not only categorized as to the area of the brain affected, but also by how much of the body is affected. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. 

People with CP use three to four times more energy than people who do not have CP. About one in every 323 children in the United States has been identified with Cerebral Palsy. CP is more common among boys than girls, and more common among black children than among white children. One in four children with CP cannot talk, one in four cannot walk, one in two have an intellectual disability, one in four have epilepsy, and about one in 10 have Autism Spectrum Disorder.

Many also have related conditions such as seizures, like myself. I will talk about my personal experience with CP and seizures. More specifically, I will talk about Hemiparesis and my seizure disorder. While there are four main types of CP, I have a type of CP called Hemiparesis which affects my whole right side and makes it harder for me to do most everyday tasks. That requires that I adapt to them or find a different way to get them done. I also have to think about it more. 

As stated above, CP is part of me, but it does not have me! Seizures, by definition, are uncontrolled electrical activity in the brain. On the other hand, how I describe seizures to someone is that they are like Google, I feel an aura, which is the precursor to a seizure. While having an aura, my eyes fix to the right, I see things that aren’t there, I start to hear things, and ask “what is happening?” and “what is this”? 

More recently, I had a seizure while I was watching my school’s winter play. It had been really hot, I felt my body tense up, I could not walk, so I called the staff, and leaving the play, they gave me my rescue medicine, which made me really tired. After I left the play, the staff carried me from point A to point B. By then, I was really tired, they gave me dinner and, after some time, I went to bed. This seizure was different in that I could not walk, or remember all of what happened. Typically, however, I remember the seizure, and am more alert. 

My seizures usually happen late at night: if I overwork myself, if I am tired, stressed, or sleep deprived. I had Hydrocephalus, which means “water on the brain.” I now have two ventriculoperitoneal shunts, which are thin plastic tubes that help drain extra fluid from the brain. I had delayed milestones, two examples include: I did not walk independently until I was 25 months old and I could not crawl because I couldn’t bear weight on my arms, but I scooted. 

The symptoms of CP vary from person to person. It is not one size fits all! Although the symptoms don’t get worse, that might become more apparent as the child grows. 

A person with  severe Cerebral Palsy may require the use of assistive technology, such as a wheelchair, to walk, while someone might walk a little awkwardly but might not need any special help. CP does not get worse over time, though the exact symptoms can change over a person’s lifetime. 

All people with CP have problems with movement and posture. There are four main types of CP: Spastic, Dyskinetic also, includes athetoid, Choreoathetoid. 

Every year, on October 6, which is World Cerebral Palsy Day, people come together to raise awareness and educate people on this condition. There is also a day in March that is to celebrate Cerebral Palsy. As the color pink is associated with breast cancer, green is associated with Cerebral Palsy to reflect youthfulness and new growth, as well as hope for advancements in treatment and acceptance. There are many ways to support CP, from instagram, to books, to people telling you their stories with it.  

I encourage you to ask someone about their experience with it. That may be hard, but just ask them directly, and be there for them because you never know how it affects the person. 

As stated before, the symptoms of Cerebral Palsy vary from person to person. In my opinion, if you are not sure if someone has it, ask questions! Also, as previously stated, ask questions of the individual rather than the parent/caregiver because, even though the parent/ caregiver knows the individual best, the individual will be better able to speak to their diagnosis and experience. 

I can’t emphasize enough that it is ok to ask questions, rather than make assumptions. I think it is the way the person asks, and that they shouldn't just assume a person has a disability just by looking at them. That being said, I feel the person should be asked directly, since they are living with it, and can give firsthand information. I feel the same way about disabilities in general, not just Cerebral Palsy.

Thank you for taking the time to learn about this condition!