CW: Depression & Ableism
Some people in the disability community like to say that their disability doesn’t define them. I understand why some people might say this. However, to me cerebral palsy does define me.
My understanding of cerebral palsy has changed over time. Throughout my childhood, I longed to fit in. I didn’t understand that it was okay to be disabled. People were constantly pushing me to be like everyone else.
People would push me to focus on my abilities rather than my disability. While emphasizing my strengths was intended to be helpful, it had the opposite effect. I wish that I’d had a better understanding of how cerebral palsy would affect everyday life. I thought I could do anything that I put my mind to.
Growing up, I was told that I would be okay as long as I continued PT and kept walking. This mindset turned out to do more harm than good. I am sure there was no ill intent, but my medical team made it sound like using a wheelchair was a bad thing.
Changes in my level of function and fatigue led me to decide that I needed a power wheelchair. I feared that I would become dependent on the wheelchair. It was this fear that kept me from getting a power wheelchair until the age of 13.
At the time, I thought using a wheelchair meant I was a failure. I had no idea how much freedom a wheelchair would give me. My wheelchair allows me to enjoy activities more.
Unlearning what I had been taught throughout my childhood was difficult and ultimately led to me developing depression at age 20. I couldn’t think straight, and I was constantly sad. By 2020, I had begun taking Prozac. For a couple of years, I also participated in weekly counseling sessions.
Everything is affected by cerebral palsy in some way. Something as simple as meal preparation, and something as complex as career planning. Both of these things are affected by my disability.
I’ll never become a pilot, architect, or an engineer. I’m not going to pursue sewing or knitting as a hobby because cerebral palsy makes it impossible for me to do these things.
Sometimes, people assume that I am a picky eater when I tell them I eat the same types of foods. However, it’s more complicated than just picky eating. I eat foods that are easy for me to chew and swallow. Soft foods such as yogurt, oatmeal, applesauce, eggs, bananas, and macaroni and cheese are staples in my diet.
As a child, I was determined not to let CP stop me from achieving my goals. As I grew up, I learned that this was unrealistic. As much as I wanted to become a surgeon, it wasn’t possible due to my lack of fine motor skills.
There are plenty of things I can do. I must focus on these things because they are worthwhile. I have found joy in the things I can do. Despite the limits of my body, I still live a full life.
Life with a disability is hard sometimes. However, a life with cerebral palsy isn’t one to be pitied. Cerebral palsy is part of who I am, and there is nothing wrong with being disabled.