My Experiences During COVID-19 Pandemic
By Jason Harris, Burton Blatt Institute (BBI) at Syracuse University
My experiences with the COVID-19 pandemic have been mixed, some good and some bad. I learned about the Coronavirus after traveling to Vienna, Austria earlier this year. When I traveled to my parents’ home in March, things began to change. I made the decision to stay with my family rather than return home to Syracuse, New York. While I have some informal supports in place, I worried that staying in Syracuse might leave me with no support at all. Because I live alone, I knew it would be difficult to stay in my home. I have been socially isolated before, but not by choice. There have been times when I had no assistance and I struggled to find ways to connect with others. Because of my apprehension, I decided staying with my parents, where at least I would not be alone and I would have some support, would be the best for me and make it easier to stay home.
Adjusting to Life in Quarantine
When the Coronavirus pandemic began, I worried how a self-quarantine would affect my mental health. I am now, surprisingly, more social than I was before the pandemic. Many of my friends have time to chat. I have been making more phone calls. I have combined my need to exercise and my love of walking, but I get bored and anxious going alone, so I call people while I walk. I have reconnected with people I had not talked to for a while.
Other than taking walks, I have not gone to any stores or been out in public. This is one reason I came home. Staying with my parents means we can be together and take care of each other. One of the reasons that I am so cautious is because all three of us have health issues that put us at risk. My parents are older, they are both over 65. I have endocrine issues from thyroid removal surgery, and I have problems with breathing and eating due to scar tissue. I am also nervous that if I were to contract the virus, I might not be able to get a ventilator as a person with a disability.
Like everyone else, I have had to adjust to new rules when I am out in public. I am diligent in doing social distancing. However, the one thing I do have issues with is wearing a mask when I walk. I am not used to wearing a mask, particularly since I have sensory issues about wearing things on my face. I also don’t wear a watch, rings, or necklaces. While I am trying to find a mask that is more accessible, it is expensive to try so many different kinds. Because I wear glasses, the mask makes them fog up easily. This makes it hard to walk since I can’t see where I am going. A mask also makes it tough to talk, since when I am walking, I am talking on the phone, and doing that with something covering my face is difficult.
Working Remotely Is an Adjustment
Being able to continue working is also very important to me. It gives me a purpose and routine, and I believe the work I do is important, especially in this time when disability rights, justice and intersectionality can be pushed to the sidelines. I have had to adjust to working remotely. Like most people, working from home gives me a daily routine, but it is still harder to find a good work/life balance. Keeping track of my hours and tasks while working on several projects has been a challenge, but I use electronic calendar reminders and forms to manage my work.
Besides following a daily routine, I must be mindful of how my workload affects my mental health and heightens my anxiety. However, I am fortunate because my current work — sharing my story, attending online workshops and webinars, and writing about how disabled people are affected by COVID-19 — can help me and other disabled people who are affected by the pandemic.
Hope for the Future
While this pandemic is an experience I never expected, I have managed to deal with working remotely, to cope with stressful situations and expectations, and to enjoy meaningful social interactions. I hope that sharing my story will make society more aware of what others are going through, especially people with disabilities, and how a world impacted by the virus affects all of us. At the end of this pandemic, we all must decide how society will change after this, especially for those of us with disabilities.