I have lived with Cerebral Palsy for 22 years. Over the years, I’ve learned that Cerebral Palsy can be frightening to live with sometimes. One of the earliest things that scared me was functional shifts. All of my life, I had been told that Cerebral Palsy wouldn’t change. Puberty was an extra challenging time as an adolescent with Cerebral Palsy.
I became frustrated when I could no longer use forearm crutches because it was too hard. At 13, I decided that it was time to get a power wheelchair. I was very discouraged. It felt like I was giving up my ability to walk. I was mad for a long time when the chair came and didn’t like to use it. As a teenager, chronic pain and fatigue also became frustrating to me. I could no longer spend hours walking around, and my spasticity became worse.
As I’ve become an adult, new fears have crossed my mind. When I graduated from high school, I had no idea what my future would look like. I didn’t know how to request accommodations in college. I quickly realized that it was a complicated process. Students have to ask for accommodations weeks in advance, and they have to reapply for them frequently.
After failing to find work experience following my freshman year of college, I began to research people with disabilities in the workforce. The statistics scared me to death. In 2021, only 19.1 percent of people with disabilities worked in the United States, according to the Bureau of Labor Statistics. I wondered if I’d ever find a job when I came across statistics like that. Three years later, I am still unemployed.
I knew that I wanted to move out eventually as I grew older. I feared that I might live in a nursing home or a group home. I didn’t want to live in a nursing home. However, I was unsure what my options would be. I knew of very few adults with disabilities who lived independently. You might think of a nursing home as just for the elderly, but this is not the case.
Many nondisabled adults are probably unaware that many people in long-term care facilities are not elderly. Children and young adults are among them. Over 6,000 young people under the age of 21 live in nursing homes in the United States, according to federal nursing home data. Many more are in their 20s. According to NPR’s Investigative Unit’s study of government data from the Department of Health and Human Services, individuals ages 31 to 64 made up 14% of the nursing home population in 2010.
Cerebral Palsy is a challenging condition to live with at times. It can be scary too. It does change over time as well. Disabled people need to be aware that barriers to employment, education, and independent living exist and that even with disabilities, they can still live their lives 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.
Shapiro, Joseph. “Youth In Nursing Homes Seek Alternative Care.” NPR, NPR, 9 Dec. 2010, http://www.npr.org/2010/12/09/131916238/youth-in-nursing-homes-seek-alternative-care.
Shapiro, Joseph. “A New Nursing Home Population: The Young.” NPR, NPR, 9 Dec. 2010, http://www.npr.org/2010/12/09/131912529/a-new-nursing-home-population-the-young.