One of the most challenging aspects of Cerebral Palsy is relying on other people. I often wonder what it would be like to get dressed or shower with total privacy. Imagine what it would be like to have strangers help you use the restroom or bathe. For many disabled people, this is a reality of their lives.
Independence is important to me, but it can be hard to make my own decisions. I have to consider other people’s lives when planning my day. I can’t drive and rely on my PCA to take me where I want to go. I can’t go to the mall on my own. Getting eggs or bread from the supermarket at a moment’s notice is impossible for me. The lack of spontaneity in my life often leaves me frustrated.
For many adults my age, life revolves around friends and socializing. However, it is difficult to meet new people when you can’t drive or get into their houses. Personal hygiene is another concern. Most bathrooms aren’t accessible to me, which means limiting my fluid intake.
In college, I often longed to hang out in dorm rooms and participate in the fun activities that the college offered at night. I would have enjoyed activities like trivia, cookie decorating, and movie nights. Unfortunately, my PCAs frequently rushed me to get home.
Early on, I felt like college wasn’t worth it. I wanted to do more than attend my classes, although I did enjoy writing for the college’s newspaper. I wanted more opportunities to connect with my peers. Remote learning made this even more difficult. It’s nearly impossible to get to know new people over Zoom.
My PCAs weren’t always aware of their role, which caused me additional stress. During my freshman year, my PCA criticized my choice of a grilled cheese sandwich and butternut squash soup for lunch. I was 19 years old, but I felt like I was a toddler. No other student was made fun of for their lunch, even someone just having ice cream.
Being dependent on other people means I enjoy making decisions, no matter how mundane. Choosing to watch TV before bed and going grocery shopping are two of my favorite things to do. Living in a nursing home would mean that these choices would be made for me. I would have to eat whatever was being served and couldn’t watch TV if it were disturbing to other residents.
Disabled people are allowed to make their own decisions. Although I have Cerebral Palsy and need help, I consider myself to be independent. Everyone has a different definition of independence, but everyone deserves to live life on their terms.