Why Disability Pride Is a Difficult Concept for Me to Embrace:

Today is July 31st which means that Disability Pride month is ending today. Disability Pride, for me, is something that I haven’t felt all of my life. Although I am content with who I am and understand that I have Cerebral Palsy, it sometimes is hard to accept that my disability does limit me in some ways. Sometimes, it feels like I am at a weird place in life because of my disability. I’m stuck between being in my 20s and feeling like I am much older because of muscle stiffness and discomfort most 21-year-olds don’t have to worry about.

Most people in their 20s don’t know that many nonelderly disabled people live in nursing homes. Can you imagine what it would be like to be in your 20s or 30s and having to live in a nursing home because there are inadequate services allowing you to live in your own home? Annual federal nursing home data shows that there are more than 6,000 young people up to the age of 21 living in American nursing homes. In 2010, Young people ages 31 to 64 made up 14 percent of the nursing home population, an analysis of federal data from the Department of Health and Human Services by NPR’s Investigative Unit found.

Growing up, for the most part, I felt like everyone else did. However, as I grew older, I never quite knew where I belonged. In high school, I remember wondering what it would be like to be an “average” teenager. I longed to take part in sports, get a part-time job, and be wondering about who was dating who. Instead, I wondered if I would annoy my aide if I needed to use the restroom more than once or how much I had to drink during the school day.

Since graduating from high school, I have felt more left behind than ever before. Once a student graduates from public school, they lose all the support they received as a part of their IEP (Individualized Education Program.) For me, this meant I no longer received biweekly physical therapy, and I lost the school-provided aides. Finding and hiring PCAs, on your own is a difficult task. There are entire websites devoted to finding babysitters, but you can’t find any websites for hiring PCAs for a young adult. You post ads anywhere you can think of. You wish that you could find someone who is like Dell from the movie The Upside. If you find a PCA, that you get along with, you hope that they will stick around for a long time. The turnover rate for caregivers is a startling 65.2%, according to Home Care Pulse’s annual Home Care Benchmarking Study.

Sometimes I feel like just giving up, but that’s not to say I don’t love my life. However, it is hardly an ideal love. It’s a love that needs to be worked on. With time, I will learn to accept my limitations more and embrace who I truly am.

Sources:

Belsky, Gail. “What Is an IEP.” Understood, Understood, 5 May 2021, http://www.understood.org/articles/en/what-is-an-iep. 

Pulse, Home Care. “Caregiver Turnover Rate Is 65.2% According to 2021 Home Care Benchmarking Study.” Home Care Association of America, Home Care Association of America, 19 May 2021, http://www.hcaoa.org/newsletters/caregiver-turnover-rate-is-652-2021-home-care-benchmarking-study. 

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. 

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.

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