One of the most challenging parts of living with Cerebral Palsy is feeling isolated and lonely. Throughout my childhood, inclusion was always discussed, especially when it came to my education. I was enrolled in public school for my entire school career. I took the same classes as my non-disabled peers. In my sophomore year of high school, I took an honors history class.
I went to summer camps and birthday parties. I went to a computer camp at Amherst College when I was 12. I played baseball and took martial arts.
Ever since turning 18, inclusion doesn’t seem to matter much anymore. Since I was a kid, I’ve felt left behind. I didn’t go to my senior prom and couldn’t get my driver’s license. It was hard to watch my younger sister sleep over at a friend’s house when we were growing up. After all, I am older than her.
At 22, I’ve never held a paying job. Many of my peers have worked since they were teenagers. It is hard to see people younger than me who work part time at the grocery store or McDonald’s. Hopefully, I’ll be able to work in the future.
I wanted to run errands for my parents when I was 16-years-old to use my newfound independence. I’ve always wanted to be helpful to my parents. My whole life, I’ve felt like a burden on the entire family. Now that I live in my apartment, I love getting groceries or other things for people. Last Christmas, I brought some keto-friendly food with me for my cousins so they could enjoy some food too. I enjoyed picking out food for them, and they were delighted to have more food.
These days I spend most of my time at my apartment with my PCA. COVID-19 has meant that I’ve spent much of my time at home over the last couple of years. I enjoy being by myself in my room. I love to read and watch TV alone. Most nights, I watch a movie or TV before bed. I’ve become familiar with entertaining myself. After spending time in the hospital when I was a child, I’ve become pretty good at entertaining myself. I don’t know how many times I watched Home Alone while at Children’s Hospital Boston in July 2012. It helped distract me and not focus on my recovery.
This summer, I hope to go to the National Baseball Hall of Fame and Museum in Cooperstown, NY. One day, I hope to take a trip to India as well. I want to see the country where I was born. India is definitely a bucket list destination for me. I truly think seeing Kolkata, where I was born, would be amazing. I want to explore the world and go on adventures.
Cerebral Palsy does mean I feel lonely at times. However, my disability doesn’t mean I can’t enjoy life. I want to have an active, fulfilling life surrounded by my friends and family. I don’t have to watch the world go by because of my disability.
Cerebral Palsy is more than just a physical disability. Individuals with CP and other disabilities may feel lonely as a result of ableism and isolation. Make an effort to connect with disabled people in your lives to show that you care. It could brighten their day.