This week, I have been focusing on blogging about living in a nursing home. My biggest fear as someone with cerebral palsy is that I’ll eventually have to live in a nursing home because of inadequate PCA services. No 22-year-old should be worrying about this. If I were to live in a nursing home, I know my quality of life would decline.
I enjoy being a part of my community. I live in Massachusetts, where I grew up. I enjoy going to restaurants, the movies, and other local venues. I particularly enjoy going for walks downtown when the weather is nice. I even enjoy driving my power wheelchair over to the outpatient PT clinic. I also enjoy visiting family in the Boston metropolitan area, and visiting other family members and friends when they come to Massachusetts.
I live in an apartment with my PCA right now. For the past two years, I haven’t been able to get out as much as I’d like to because of the coronavirus. However, when it is safer to do so, I can’t wait to get out in the community more. Before the pandemic, I enjoyed going to the movies and the arcade. If I lived in a nursing home, I wouldn’t get to go out whenever I wanted to.
I don’t want to face the possibility of having to live in a nursing home. I wouldn’t enjoy playing bingo with older adults every week. To non-disabled people in their twenties, living in a nursing home during young adulthood is likely inconceivable. For many disabled people, it is a frightening reality. In 2010, 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.
I wouldn’t have the space to pursue my passion which is writing. I enjoy sharing my perspective with the world. I hope to turn my love of writing into a career. I would love to work as an author. I probably wouldn’t be able to work if I lived in a nursing home.
If you live in a nursing home, you can’t stay up in the evening watching TV before bed. Your friends and family can’t visit whenever they want. You aren’t even allowed to leave the facility without permission. I wouldn’t get to choose my meals.
My biggest fear about living in a nursing home is that my quality of life and possibly even my health would rapidly decline. I enjoy the freedom of living in my community. I am prepared to advocate for disabled people to live at home. I’m not giving up my right to independent living.
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.