The COVID-19 pandemic has affected the entire world in different ways. Economies have ground to a halt. State and nationwide lockdowns have been issued. Many hospitals are at capacity and they do not have enough staff, personal protective equipment, nor ventilators/respirators that are required to save those infected with the virus. The CDC has suggested simply staying home or remaining at least six feet apart when interacting with others, also known as social distancing. This suggestion might seem easy to follow, but for people like me, practicing social distancing is not possible.
According to the CDC, 26 percent of United States adult citizens have some type of disability. 13.7 percent have “serious difficulty walking or climbing stairs,” 6.8 percent have “difficulty doing errands alone,” and 3.7 percent have “difficulty dressing or bathing.” I have difficulty with all three of those things. I have a rare genetic neurological disorder called ADCY5-related dyskinesia. It affects me physically, but not mentally. I use a power wheelchair to get around. I am able to walk, however, I need assistance to do so. I also need assistance getting dressed, cooking, showering, and going to the restroom.
Thanks to a strong will to be independent, I graduated in May 2019 with a bachelor’s degree from Whittier College which is an hour and 40 minutes away from where I grew up in San Diego. Throughout college, I received Supportive Living Services and an agency would provide personal care assistants (or “helpers” as I like to call them) to assist me with my daily living needs. After graduating, I moved into my own apartment in Whittier, ultimately continuing the same services I had during college.
Due to my physical limitations, I require 24/7 care. I have three helpers a day and they work in eight-hour shifts. For the most part, I have the same helpers each week, unless one of them calls out and the agency has to find coverage for that shift. My regular team consists of about six or seven helpers. Many of them have other clients or jobs they go to on a regular basis. They assist me with pretty much everything. Thus, staying six feet apart was not an option. So when COVID-19 hit, my doctor told my mom to bring me home to San Diego because there was no way of knowing which of my helpers possibly could be infected. My parents and my doctor decided it would be better to self-quarantine with my parents at home. Therefore, on March 13, I came home to San Diego.
I have now been home for over a month. My mom gets our groceries delivered so none of us have to go to the store. No one has come in our house. We walk our dog, Allie, around the block or the campus of UCSD. We stay on the other side of the street when talking to our neighbors. I had my monthly IV infusion, which requires a nurse to come for five hours for two days, in the garage so she would not have to be in our house. It is impossible to social distance when someone is putting an IV in you. Both of my parents work full-time and have had to figure out a schedule of which one can be available to help me when, which is something they never really had to do because I usually have someone else here to help me if they are unavailable.
When I see people who are still not practicing social distancing, it is infuriating. To them, I say: you have the complete ability and choice to social distance, but people like me do not.
For more on the coronavirus, check out the following stories from our community: