Kids With Cerebral Palsy Grow Up: World CP Day 2021

Today is October 6th which means that it is also World Cerebral Palsy day. My readers already know that I have CP. Cerebral Palsy is often thought of as a childhood condition. When I woke up on my 18th birthday in 2017, I was an adult with CP all of a sudden. I felt like I had taken a trip to another planet where the friendly residents were surprised to see me. I guess I didn’t understand that society wants disabled people over 18 years old to disappear.

Upon graduation from high school in June of 2018, this feeling became even more intense. As soon as I graduated, all of my school-provided supports ended. I lost my biweekly physical therapy sessions. This led to my muscles becoming tighter which caused pain. My joints also became stiff. Thankfully, I was able to begin working with an outpatient PT again in January of 2020. Also, because I am now 22, I am not eligible to continue going to Boston Children’s Hospital where I have received specialized care for the past 12 years. Fortunately, my doctor also treats patients at Spaulding Rehabilitation Hospital.

I was also unprepared to find my own staff of personal care assistants. I went through three PCAs in my first three semesters of college. Often my PCAs would run late or have car trouble. As a college student I didn’t want to be worrying about if I would get to my classes on time. It’s impossible to focus on schoolwork, socialization and job readiness if you can’t get to class or have unreliable help to use the bathroom.

My mother and a friend often took turns filling in when a PCA couldn’t work their shift. I began to feel unworthy of pursuing my dreams because people didn’t want to assist me with my needs. I began to take it personally when people said that they weren’t interested in the job. I wondered if people thought that I’d make a terrible boss.

When it comes to the employment rate of those with disabilities, this just frustrated me even more. In 2020, only 17.9% of Americans with disabilities were employed. This is despite the fact that disabled people are the world’s largest minority. My whole purpose behind going to college was to get a job. I began to have thoughts of being an unemployed college graduate because of Cerebral Palsy. I didn’t want to have worked very hard only to have my degree essentially be meaningless because nobody would hire me. After my freshman year of college, I tried to pursue a work opportunity with a local woman who works in publishing. Unfortunately she works out of her home which isn’t accessible. Cerebral Palsy also means that I can’t just go get a job working in retail in the interim. I don’t have the physical ability to work in a retail store.

Society needs to understand that children with CP end up growing into adults who still have CP. We need to serve adults with CP as well as children, because adults with Cerebral Palsy deserve to live their lives to the fullest.

Sources:

Caprino, Kathy. “The World’s Largest Minority Might Surprise You, And How We Can Better Serve Them.” Forbes, Forbes Magazine, 14 Apr. 2016, http://www.forbes.com/sites/kathycaprino/2016/04/14/the-worlds-largest-minority-might-surprise-you-and-how-we-can-better-serve-them/?sh=737aa3ca496f. 

Lawson, Eleanor. Young Activist Launches Campaign Ahead of World Cerebral Palsy Day, Express And Star, 30 Sept. 2021, https://www.expressandstar.com/news/health/2021/09/30/young-activist-launches-campaign-ahead-of-world-cerebral-palsy-day/.

“Persons with a Disability: Labor Force Characteristics Summary.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 24 Feb. 2021, http://www.bls.gov/news.release/disabl.nr0.htm.

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