What Keeps Me Awake at Night as Someone Living With Cerebral Palsy:

We all worry about things in life. Living with a disability means that there is no shortage of things for somebody to worry about. One of my biggest fears is that health insurance will decide I don’t need medications, or necessary equipment to be able to live my life. I am constantly frustrated that a team of presumably non-disabled bureaucrats are the ones who decide what I need and don’t need. Sometimes, I wish I could have them live a day in my shoes. Back in March of this year, I finally received my new power wheelchair after a year and a half of waiting.

My health insurance denied the chair in its entirety at first. However, with more substantial letters of medical necessity from my team at Boston Children’s Hospital, they eventually approved the chair. I was relieved when I received that news in the mail.

My insurance, however, denied the seat elevation function on my new power wheelchair because they deemed it not to be “medically necessary.” I utilize the seat elevation function to help me accomplish tasks such as brushing my teeth and reaching high cabinets in the kitchen of my apartment, or filling up a glass of water.

This function has also proven beneficial when I am in science classes and doing a lab. The seat elevation function on my power wheelchair also helps reduce the strain on my neck because I can be at eye level with people. Ultimately though, the kindness of my community allowed me to have the seat elevator on my new chair.

My second biggest fear is being neglected, abused, or forgotten by a caregiver. According to the Center on Victimization and Safety, people with disabilities are three times more likely to experience violent victimization than people without disabilities. The rates are even higher for women and those with intellectual, psychiatric, or multiple disabilities.

People with disabilities are sometimes isolated and reliant on a limited circle of friends or caregivers for essential support, such as hands-on assistance with basic physical needs. These same caregivers are frequently the abusers, putting the victim in a tough position to choose between the possibility of continued abuse and an unclear future. I shouldn’t have to worry that a caregiver could end up exploiting or abusing me. However, it’s all too common.

Lastly, I fear that I will be unemployed and have to rely on government assistance and the kindness of others to be able to get by in this increasingly expensive world. I have never held a paying job before, and I am almost 22-years-old. After failing to secure a work opportunity after my freshman year of college, I began to research the employment statistics of disabled people in America.

The more research I did, the more I questioned my decision to attend college in the first place. In 2020, only 17.9% of Americans with disabilities were employed. My whole purpose behind going to college was to get a job. I began to have thoughts of being an unemployed college graduate because of Cerebral Palsy. I didn’t want to have worked hard to earn a bachelor’s degree only to end up unemployed at the end of it. I worry that I’ll never really have a fair shot at gainful employment because other people always seem more capable than me.

Being unemployed, neglected, or denied critical equipment makes me question if my life is as valued as a nondisabled person’s life. I wish our ableist society didn’t make me feel this way. A lifetime of ableism has led to severe depression and questioning my worth daily. I’m working on seeing the value in myself because everybody is worthy and has something to contribute to society.

Sources:

“Persons with a Disability: Labor Force Characteristics Summary.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 24 Feb. 2021, http://www.bls.gov/news.release/disabl.nr0.htm.

Nancy Smith, Sandra Harrell, and Amy Judy. How Safe are Americans with Disabilities? The facts about violent crime and their implications. New York: Vera Institute of Justice, 2017.

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