The past two weeks in voluntary self-quarantine have given me far too much time to think about the irony of being disabled during a pandemic. On the one hand, living with a rare disease, Spinal Muscular Atrophy, places me in the vulnerable population that is too often written off as “just the 1%”. At the same time, I realize that I may be one of the few people who have been unknowingly preparing for this day by virtue of my disability.
Preparing for a pandemic is like preparing for life with a chronic disease. Every day, we wake up and ask, “how can I get through this day conserving as much energy as possible and limiting myself to risk, while still enjoying my life?” Able bodied people are finding themselves in the same situation – wondering how to become resilient in the face of limitations out of their control.
As independent as I may be, it would be untruthful to count out the intricacies of interdependence that I have within my community. My energy is my most finite resource. Though I might have the will to wake up at 5:30 AM, head to the gym, take a shower, make a nutritious breakfast, crank out three conference calls and write a blog before noon, it is simply not feasible, nor is it in the best interest of my physical health.
I’ve found ways around these dilemmas, proving that if there is a will, there is a way. For one, I do a lot of online shopping. If I can find it online, I almost always buy it online. Instead of going to stand-alone shopping centers, I try to maximize efficiency by going to shopping plazas, so I have fewer transfers in and out of my car. If I need a coffee in the morning, I will only go to shops that offer a drive-thru. Thanks to the vast capabilities of the internet, coupled with my profession being mainly office-based, my work is extremely flexible with allowing me to work from home.
Up until this point in history, all of the tasks listed above were considered luxuries. Trust me when I say, it is no luxury to drive past 3 self-serve gas stations on the way to pay more at the full-service pump because I can’t physically pump my own gas. For me and for many others with rare diseases, these luxuries are necessities.
The fact that the United States has adapted in a matter of weeks to a life that is safer and universally accessible has left somewhat of a bad taste in my mouth. It’s as if you were telling me, all this time, our society could have accommodated the needs of disabled individuals. But somehow, because we are the most vulnerable, the most disposable to begin with, these simple changes were previously seen as a nuisance.
It was only until these issues crept into the lives of able-bodied people needing to access necessities that drive-up groceries and curb-side prescriptions became a reality. As scared as I feel for my own health, never mind the health of others in the community, I feel prepared. I have heard the same sentiment from individuals across the country living with pre-existing conditions. While staying inside might not be fun, we have already learned to put our health first in better circumstances.
This is not, of course, to discount the fact that my life has been upended, just like others across the globe. In my senior year of college, all graduation activates have been cancelled. My spring break trip to Miami was put on hold (unlike other Gen-Zers). My goal to visit all 50 states by December has been set back to a future date, likely beyond the horizon. And perhaps most importantly, I stay up late stressed about the future of the clinical trial I am enrolled in, and whether or not my treatments will be “essential” enough to warrant continuation at my hospital.
In the meantime, I’ll find a new hobby and flourish in the moment. Perhaps this means knitting a scarf I’ll never wear, binge watching all Harry Potter movies, and jumping on a Zoom call in leisure wear without makeup. The adjustment is difficult for us all, but I hope that this leaves our society with a better understanding of exactly what it means to be accommodating.
I want to leave my house as much as my neighbor, but as all disabled individuals know too well, now is the time to take this obstacle and turn it into an opportunity.