I’ve been writing recently about navigating adulthood as someone with Cerebral Palsy. Since turning 18, I’ve felt lost. On the morning of my high school graduation, I sat in the cafeteria, looking around. Many of my classmates were visibly emotional as they said goodbye to each other. It was only fitting that I felt like I didn’t belong on my last day of high school. I felt like an outsider.
I was more emotional that morning when I went to see my grandmother at her nursing home. It was a bittersweet moment when she saw me in my graduation gown. My grandmother has always been there for me, so of course, I wanted to include her in my graduation.
Upon graduation, I felt nervous and uncertain about my future. Most high school graduates are nervous about the future. Cerebral Palsy made this even more prevalent. I no longer received any support from my school district.
In my case, this meant that I lost my biweekly PT sessions and my paraprofessional. Immediately following my graduation, I noticed my spasticity intensified, probably because I wasn’t receiving PT anymore. I’d been receiving PT through the school system since I was in preschool. I was also unsure about hiring full-time PCAs so that I could go to college. In my freshman year, I went through two PCAs. I had the same paraprofessional from age 5-15 and, after that, received a new one each academic year. I’d never experienced having to hire someone new in the middle of an academic year.
Upon turning 22, I was no longer eligible to receive care at Boston Children’s Hospital. I had been a patient there since I was ten years old. Adults with CP still need specialized care. Thankfully, I’m able to continue my care at Spaulding Rehabilitation Hospital.
Accommodations are also much harder to get in adult life. Colleges aren’t obligated to provide accommodations unless the student registers with disability services. It was a struggle to make sure that I had accessible textbooks, notetakers, and other supports. Accommodations in the workplace aren’t much different unfortunately. My need for a PCA in the workplace is frequently denied. Without a PCA, I wouldn’t be able to work.
Perhaps the thing that is most frustrating to me is the lack of inclusion in adulthood. Throughout my childhood, inclusion was always talked about. Ever since becoming an adult, inclusion doesn’t seem to matter much anymore. I feel forgotten about. I feared I might end up living in a nursing home or group home. As a teenager I thought I might end up attending a day program rather than going to college. I knew I wanted to go to college, but I thought it might be impossible.
Nobody informed me about the ableism that is rampant in the world of employment. In 2021, 19.1 percent of people with disabilities worked in the United States, according to the Bureau of Labor Statistics. 80.9% of people with disabilities in the United States were unemployed last year. What are they supposed to do all day? I’ve filled out hundreds of job applications in three years, and have yet to find a job.
Adulthood with a disability is challenging. Adults with disabilities exist. We aren’t characters in storybooks. I didn’t outgrow CP when I turned 18. We want to participate in society just like anyone else. Society wouldn’t forget non-disabled adults, so why do we often get forgotten? Although we’re no longer kids, we still deserve to live life to the fullest.
“Persons with a Disability: Labor Force Characteristics Summary – 2021.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 24 Feb. 2022, https://www.bls.gov/news.release/disabl.nr0.htm.