Since entering adulthood, I’ve learned that living an independent lifestyle with a physical disability can be difficult. I had to request more PCA hours from Medicaid when I graduated high school. This was necessary for me to be able to attend college. I had to appeal Medicaid’s first decision. I wanted to explain to them that I wanted to attend college like many other 18-year-olds. It shouldn’t matter that I need a PCA to help me with activities of daily living.
Dealing with health insurance has also been challenging as an adult. I received a new power wheelchair last year, and the process was grueling. My insurance company insisted that I didn’t need a new wheelchair, and I had to appeal their decision twice. Even after winning my second appeal, my insurance refused to cover the seat elevator on my chair. They said I didn’t need it for medical reasons. iLevel helps me reach cabinets, the refrigerator, and shelves at the grocery store. I can also get myself a glass of water, thanks to iLevel.
In August 2020, I moved out of my parent’s home into my own apartment. Finding an accessible apartment proved to be very challenging. I looked at several different apartments. None of which were wheelchair-accessible. After doing lots of research, I was able to find an apartment that, while not ideal, was workable. I can get around, and I use a bath transfer system to shower.
Accessible housing is hard to find nationwide. Apartment List conducted a study utilizing data from the American Community Survey and the American Housing Survey in February 2020. Only 9% of households with a disabled member live in an accessible home, according to the survey. Even though more than 15% of households in the United States include a physically disabled member, just 6% of homes are accessible.
Now that I’ve lived independently for almost two years, my next goal is to become employed. In this economy, finding a job is challenging for anyone, even more so for those with disabilities. In the United States in 2021, 19.1% of people with disabilities worked, according to the Bureau of Labor Statistics. This means that 80.9% of people with disabilities in the United States were unemployed last year. I am, unfortunately, one of the millions of Americans with disabilities who are unemployed.
I’ve been looking for a job since I was 19-years old and have been unsuccessful. I couldn’t get a job at McDonald’s or a local grocery store once I disclosed my disability. I’ve filled out hundreds of job applications since then and haven’t had any luck. In April, the manager of a local Homewood Suites hotel rescinded my interview for a front-desk position once I told her that I had Cerebral Palsy.
Discrimination is supposed to be illegal according to the Americans With Disabilities Act, but it happens regularly. I’ll be unemployed forever if societal attitudes toward disabled people don’t change. I don’t want to rely on SSI for the rest of my life.
My 18-year-old sister, who doesn’t have Cerebral Palsy, has now found two jobs before I’ve found my first one. She worked at a fast-food restaurant in high school and recently got a summer job at a nearby private school. This is very frustrating to me. I’m 22-years-old and have never held a paying job.
Employers are sometimes unwilling to provide necessary accommodations. Having a personal care assistant available is essential to my professional success. If I didn’t have a PCA, I wouldn’t be able to get to work or use the restroom. I couldn’t work full-time without going to the bathroom at some point during the day. Employers are not obligated to allow personal care assistants at work. Despite the fact that having a personal care assistant is likely the most important accommodation I’d require.
It’s possible that one of the reasons many disabled people are unemployed goes unnoticed. Some of us with disabilities rely on government assistance, such as Medicaid, to live our lives. People cannot go a day without getting dressed, having meals, or showering. The amount of money you can make and the number of assets you can keep are both limited in some of these programs. The system ultimately forces disabled people to live in poverty in order to survive. Medicaid should not be based on a person’s financial situation.
I want to be able to work, pay taxes, and live an independent lifestyle with Cerebral Palsy. Achieving independence as a disabled person shouldn’t be as hard as it is. All disabled people should be able to live their lives as they want, just like any non-disabled person does.
“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.
Warnock, Rob. “How Accessible Is the Housing Market?” Apartment List , Apartment List, 19 February, 2020, http://www.apartmentlist.com/research/how-accessible-is-the-housing-market.