Intro to Cerebral Palsy 101

For anyone who has ever actually spoken to me, you have definitely heard my CP elevator pitch at some point. I am sorry for the people who had to sit through my awkward talk on it in 6th grade; all you need to know about that is it’s on youtube and I wore a beanie and a fringe cheetah shirt. Having a physical disability is fun when I want to skip the lines at the airport, but most of the time it is a pain because most people have no idea what it is. If they do, they often know very little, with wrong, stereotypical facts or facts that are true, but only account for severe cases. Gold stars for those people at least? Well, because I am lazy but passionate, I am giving a longer elevator pitch of what exactly my disability is - sort of like a Crash Course: Ability version - but unfortunately without Hank Green’s entertaining animation.

If I’m being totally honest, I can’t remember a time when I didn’t have Cerebral Palsy. I was diagnosed at 9 months old, simply because I couldn’t crawl like a basic bitch. Instead, I laid flat during Mommy and Me, with my two good friends today next to me. The room of one year olds all judging my limp body. Naturally, my mom was like “OK something is wrong with my daughter, let’s get her fixed.”

We went to the doctor, they did some tests (not that I know exactly what they were) and then told my parents the words no new, 26 year old parents want to hear, that their daughter will never be able to walk ever in her life. Starting my life off with doubt. From there I went to CHOP for every doctor appointment, botoxs (in the legs, obviously people), casts and even an 8 hour surgery. I basically lived at the hospital until I was about 16. I am 19 now… Do the math. I know that hospital like the mole on the side of my wrist; it is quite strange.

The most noticeable feature of my incredible disability is my muscular spasticity, mainly through my gait. My CP is hemiplegic, meaning that it affects the brain that controls muscle movements. WebMD, my ~trusted~ doctor, describes my specific case as hemiparesis, which means a weakness on one side of the body. Some of the classic signs of this include: stiffness and weakness in muscles on one side of the body, only using one hand or favoring one hand before the age of 3 years, keeping one hand in a fist, difficulty with walking and balance, difficulty with fine motor tasks like writing or using scissors, delay in reaching expected developmental milestones such as rolling over, sitting up, crawling, or smiling.

While the symptoms, and the severity of each, vary from each individual, I do show bits of each. For example, I am currently typing this post with one hand while my left hand in curled in a half fist next to me. This is due to general stiffness on my left side. I can use my left hand to type and do other things, but it isn’t as flexible - my fingers cannot move fast and bend enough to type the keys in the same rhythm as my right hand. It just gets in the way. I know a girl with CP who can’t type with her hands at all and instead must rely on speech-to-text for all “typing” necessities.

A common misconception about disabilities is that it affects the intelligence of the person. I can tell you that is just downright wrong. The intelligence of the person never correlates with the conditions. I know some genius people who cannot speak as clearly or with ease, but has run an entire theater company for other disabled children. Another girl I know has starred in a movie and attends a prestigious college, despite the fact that she cannot walk without an assistive device. I will say factually that some people can have some learning and developmental disabilities and disorders as a result from the brain damage that causes CP in the first place. I, for example, was diagnosed with Attention Deficit/Hyperactive Disorder, which was proven to be caused by the same brain injury that caused my disability. Others can have a speech delay, lack of communication and social skills, sensory defects and seizures. Each individual case is different and dependent on various factors, including therapy, severity of injury, environment and many others. A lot of the other conditions related to Cerebral Palsy can be “cured”, and some are not.

The last misconception that I will knowledge you about is that people with CP are helpless. I know damn sure they are not. Do some of us need help? Yes, it can be hard to go about life and there are some obstacles, physically, mentally and emotionally. However, just because we do have some obstacles and might be struggling in the club, does not mean we need our knight in shining armour. It can be pretty empowering to do something, like get up a flight of stairs slowly or type this blog with one hand might seem difficult, but hey, we thrive on accommodating and adapting ourselves. Multiple times, I’ve seen people try to help adult persons with disabilities sock puppet, because they saw them struggling, only for those people to then make some boss ass puppets with no help at all. I suggest we all take some time to sit down and try to make sock puppets as good as they did, even with their limitations.

Now, that is the end of my lecture on Cerebral Palsy. Someone hire me to be a public speaker, thanks :) I will say, if you read none of what I wrote, which is a damn shame, if you ever have a question about Cerebral Palsy (or any disability, not about exclusion here people), just ask!! I guarantee you the person, if they are at all like me, will love to give you their own version of the CP spiel.