I wrote yesterday about why low expectations for people with disabilities are dangerous. When I graduated from high school, I had no idea what my future would look like. I had goals, but I had no idea how to achieve them.
I knew I wanted to go to college and get a bachelor’s degree, but I wondered what this would look like. After all, I require accommodations. I quickly realized that getting accommodations was challenging. Nothing was simple. I had to make sure I had accessible textbooks, furniture, and notetakers.
Students have to request accommodations weeks before the semester starts. Colleges aren’t obligated to provide accommodations unless the student registers with disability services. Much of the advocacy falls on the student since they are now an adult.
Colleges also don’t provide assistance with a student’s personal care needs. In my first three semesters of college, I went through a new PCA every semester. This was extremely frustrating to me. Without a PCA, I couldn’t get to campus. It’s impossible to enjoy college when you wonder if you’ll get there on time. My mom frequently drove me to college when my PCAs didn’t show up. It made me feel like a burden to my mother because she often had to rearrange her work schedule when PCAs didn’t show up or were late.
I was uncertain if I would be able to move out of my parents’ home. Most young adults consider moving out to be a major milestone. I knew I wanted to be able to live in my own apartment. I knew of very few individuals with Cerebral Palsy who lived independently. Many people with Cerebral Palsy live at home with their families or in a group home or other facility.
I knew I didn’t want to stay at home forever, but I wasn’t sure what my options were. I didn’t want to be in a nursing home or a group home. At times, I worried that I wouldn’t be able to choose whether or not to stay in my community. I didn’t want to live in a nursing home as a young adult. No 22-year-old wants to live in a nursing home. Cerebral Palsy didn’t mean that I’d have to end up living there.
I moved out in August 2020, when I was 20-years-old. I live with a longtime friend. I enjoy living in my apartment. I do my own grocery shopping, and meal planning. My favorite thing about living on my own is that I can have friends and family over whenever I want. I am hoping to make my apartment more accessible later this year by installing a roll-in shower in the bathroom as well.
I’ve lived on my own for almost two years now, and am now focusing on my vocational goals. I hope to begin working part-time by the end of the year. In addition, I will be pursuing an associate’s degree in English at the local community college this fall. I hope to eventually earn a bachelor’s degree in English and pursue a career in writing. I often wonder what it would be like to write a book and become a published author.
According to the Bureau of Labor Statistics, 19.1% of people with disabilities worked in the United States in 2021. In the United States, 80.9% of people with disabilities were unemployed last year. What are disabled people expected to do all day? I’d love to be able to be a taxpaying citizen rather than relying on a monthly disability check. Employers often don’t want to hire me once I disclose my disability. I’ll be unemployed forever if societal attitudes towards people like me don’t change.
Decades ago, people like me were forced to live in institutions such as Willowbrook State School. Willowbrook State School is now closed. More and more people with disabilities are living in their communities. Home healthcare providers allow people with even the most complex medical needs to live at home with their families and even live in their own homes. It’s not the 1950s anymore, and people with disabilities deserve equal opportunities.
We need to show younger people with disabilities that it’s possible to live an independent life with disabilities. I didn’t grow up around adults with disabilities. I wish I’d seen more adults with disabilities living independent lives. I know that it would have meant a lot to me. It would have shown me that I could still live a full life with Cerebral Palsy. Instead, I was fearful and anxious about my future as an adult with CP.
I want to have a meaningful career, perhaps get married, and have children in the future as well. Cerebral Palsy won’t prevent me from living my life. It just means that success might look different for me than most people.
I want to have a meaningful, productive life surrounded by loved ones and friends. Is this too much to ask for? Cerebral Palsy shouldn’t stop me from living life. We need to show all people with disabilities that life can still be lived with a disability.
Brown, Ivan, and John P. Radford. “The Growth and Decline of Institutions for People with Developmental Disabilities in Ontario: 1876-2009.” Journal on Developmental Disabilities 21.2 (2015).
Noll, Steven. “Institutions for people with disabilities in North America.” The Oxford Handbook of Disability History (2018): 307-326.
“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.
Weiser, Benjamin. “Beatings, Burns and Betrayal: The Willowbrook Scandal’s Legacy.” The New York Times, The New York Times, 21 Feb. 2020, https://www.nytimes.com/2020/02/21/nyregion/willowbrook-state-school-staten-island.html.