Growing up, I spent a lot of time with various professionals, including physical therapists, special education teachers, and physiatrists. I am very fortunate to have known many excellent professionals who have helped make life with CP easier. There are some things that I’d like professionals to understand when working with people who have Cerebral Palsy.
One of the most challenging aspects of living with Cerebral Palsy for me is fatigue. If I’m tired during a PT session, know that I’m not trying to get out of therapy early. Everyday tasks take much more energy for me. When it comes to physical activity, I use much more energy than my nondisabled peers.
According to the American Academy for Cerebral Palsy and Developmental Medicine, due to the way CP affects the way people move, people who have cerebral palsy may have to use 3 to 5 times more energy to perform the same amount of work as their peers in terms of effort, persistence, muscle control, and concentration. Even at rest, people with CP have to work hard. Using a walker is tiring, so I get fatigued quickly. If you are a PT, bear in mind that the typical session can be exhausting for patients with Cerebral Palsy.
Chronic pain is also present in my daily life. I have spasticity, which can cause pain. If I’m not as engaged one day during therapy, it’s usually because I am experiencing spasticity or pain. During these times, I need my therapists to be patient and understanding. Be gentle if I tell you that I am in pain. If we need to stop mid-session sometimes, that is okay.
Cerebral Palsy affected my mathematical ability and visual-spatial skills as well. If you ask me to do a maze or look at an optical illusion, chances are it will be nearly impossible for me to figure out. This doesn’t mean that I’m not intelligent in other ways. I’ll never be a physicist or the next Albert Einstein, but I could be an author, poet, or teacher. Disabled people, like all people, have their strengths and weaknesses in life.
More than anything, I want professionals to understand that I’m capable of making decisions and discussing my healthcare independently. I will have a PCA with me at my appointments, but please don’t ask them questions about me. I am the patient, so speak directly to me. I’m 22-years-old, and I deserve to be spoken to like an adult.
I am no different than any other person you work with, except for the fact that I have Cerebral Palsy. Get to know people’s interests too. My physical therapist and I usually talk about sports, TV shows, or restaurants during our sessions. This puts me at ease with him and ensures that he knows that I am more than a diagnosis on a piece of paper.
People with Cerebral Palsy are human beings, regardless of their diagnosis. We are worth getting to know when you work with us. Every person with CP is different. However, we are all worthy of dignity and respect.
“Cerebral Palsy AND Post-Impairment Syndrome.” Edited by Gina Jansheski, Cerebral Palsy Guidance, Cerebral Palsy Guidance, 19 Sept. 2020, http://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/post-impairment-syndrome/.