Cerebral Palsy is usually viewed as merely a physical disability. As someone who has had CP her entire life, it has an impact on all aspects of my life. One of the most difficult aspects of living with Cerebral Palsy is the isolation and loneliness that comes with it.
During childhood, inclusion was a regular part of my life. I played sports, went to birthday parties, and attended local schools. I made friends, and enjoyed having them over to visit.
As I grew up though, I began to feel like I was an outsider. I didn’t go to prom or play sports in high school. Data shows that feelings of isolation among disabled adults are common.
According to a 2018 study, in the U.S., an estimated 17.4 million disabled people experience frequent stress and anxiety 4.6 times more frequently than non-disabled adults in the United States. Disabled adults living below the federal poverty line experience stress 70% more often than adults in higher-income households.
At times, the healthcare system is upsetting to me. Two years ago, I received a new power wheelchair. The process took eighteen months. My insurance denied the chair entirely at first. With every setback, my patience grew thinner.
However, they denied the seat elevator as well. According to Health New England, I didn’t need it. The people who made this decision have never met or spoken to me. I am more than a letter of medical necessity or a diagnosis, but that is how they see me. It is impossible for a letter to describe everything about my life.
Navigating bureaucratic systems is a long, emotional process that can take years. Disabled people often have to fight for things that improve their daily lives. Insurance companies shouldn’t deny disabled and chronically ill people access to equipment and other supplies they need to live.
Cerebral Palsy is much more than just a physical disability. Because of ableism and isolation, those with CP can end up feeling lonely. If we need to talk about something frustrating, that is okay. Being there for us during difficult times is priceless.
Cree RA, Okoro CA, Zack MM, Carbone E. Frequent Mental Distress Among Adults, by Disability Status, Disability Type, and Selected Characteristics — United States, 2018. MMWR Morb Mortal Wkly Rep 2020;69:1238–1243. DOI: http://dx.doi.org/10.15585/mmwr.mm6936a2