CW: Depression, Death, & Eugenics
Over the past several months, my depression has worsened. In a month, I am due to go to college and pursue an associate’s degree in English. I should be excited about continuing my education, but I am not. Growing up, I was told that if I worked hard and went to college, I’d have no trouble finding a well-paying job. 19.1% of Americans with disabilities were employed in 2021. This doesn’t match what I was told as a child.
Discrimination is illegal is another lie I was told growing up. Can you imagine how frustrated I was when I discovered this wasn’t true? In April of this year, a manager of a local Homewood Suites hotel rescinded my interview after I disclosed my disability. I couldn’t get a job at the local Stop And Shop because the timekeeping system is upstairs. I didn’t understand why they couldn’t make reasonable accommodations for me. After all, this is the law.
I’ve been trying to navigate how to work as a person who needs PCA services. When I request this as a reasonable accommodation, it is denied. Employers must understand that caregiving and employment are inextricably linked for some people with disabilities. Without my PCAs, I would be unable to get to work. I couldn’t work without using the bathroom or having lunch.
As I got older, I learned that it is practically impossible to live above the poverty line if you are a disabled person in the United States who depends on government help like Medicaid. I never really believed this at the time. However, the more tough situations that disabled people like myself are obliged to face, the more I realize how pernicious these systems are and how difficult it is to maintain a standard of living over the poverty line when you require the amount and quantity of care that I and others like me need.
It’s been challenging to live as a person with CP since the COVID-19 pandemic began. I don’t want to catch COVID-19 because it could have disastrous consequences for me. I avoid many public places. Leaving my apartment causes me to become overwhelmed and anxious. Transitioning to in-person classes will be difficult, if not impossible, for me. I haven’t attended in-person classes since 2019. Remote learning didn’t work well for me either. I am concerned about attending in-person classes this fall.
I can’t help but wonder what would happen to me if I were hospitalized with COVID-19. Would my life be worth saving, even though I am disabled? Cerebral Palsy is considered to be a comorbidity according to the CDC. Sarah McSweeney, who died in 2020, had Cerebral Palsy. McSweeney was nonverbal, but had made her wishes clear regarding life-saving efforts. The staff was puzzled as to why she hadn’t filled out a DNR. A do-not-resuscitate order is a legal document issued by a physician saying that you do not want to be resuscitated in an emergency. Patients with disabilities deserve to be treated with the same respect as non-disabled patients. This is terrifying to me as a woman with Cerebral Palsy.
I desperately want people to understand that even in the best of times living with a disability is challenging. Ableism holds us back more than you might think. All I want is the same opportunities as non-disabled people have. Is this too much to ask for?
“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. “As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access? .” NPR, NPR, 14 Dec. 2020, https://www.npr.org/2020/12/14/945056176/as-hospitals-fear-being-overwhelmed-by-covid-19-do-the-disabled-get-the-same-acc.