I hung up the phone, called my parents, rented a car, packed my bags and drove 13 hours from New York City to the suburbs of Chicago the next morning. Meanwhile, my friends were still going out to dinner and going into work. I could tell my coworkers and roommate thought I was being absurd, but I couldn’t afford to care about their opinions. I had simply fought too hard for all 27 years of my life, I couldn’t lose it here.
I was born with a rare liver disease resulting in the need for two liver transplants. As a transplant recipient, I take medication that suppresses my immune system, leaving me vulnerable to getting sick more easily and more severely — and to having a harder time recovering than most. Because of my condition, I’ve spent a large portion of the past year living with my parents, seeing few others.
It’s also why the Covid-19 vaccine is so important for me to receive, because while it won’t change my behavior immediately it will change the question that weighs on me every time I have to leave my house: If I contract Covid-19, will I die?
I and my young sick peers — the ones with cancer, with HIV, who have recovered from a bone marrow, stem cell, or solid organ transplant — are increasingly becoming deprioritized across the country, sent to the back of the vaccine line alongside our 20-something healthy peers, those with lives that are unrecognizable to us.
And if you are someone who is thinking that disabled people don’t need to leave their homes, stop. Disabled people live lives as big, as full, and as necessary as our nondisabled counterparts. What’s more: Many of us have no choice but to access the health care system amidst the pandemic. Our health needs don’t care about the risk we face if we visit our doctor, require a procedure, surgery, inpatient stay, or physical therapy.
I’m a sexual assault and domestic crisis volunteer advocate for four hospitals in New York City. Given the pandemic, the program offers us the opportunity to provide virtual or in-person support. However, I just received an email from the program coordinator notifying me and my fellow advocates that we qualify for a vaccine under group “1a” as unaffiliated health care workers.
I’m now on the hunt for a vaccine, as many are (navigating a system so frustrating I’d need another op-ed to address: broken websites, canceled appointments, no communication on availability, and endless hours spent calling every possible distribution location to be added to a long wait list), but I can’t help but be struck by the irony of the situation. The reason I qualify for a vaccine has nothing to do with my lifelong health challenges, but rather my extracurricular status as a health care volunteer. It’s not the reason I’d die, but it’s the reason I’m seen by our government as important enough to save.
I believe all health care workers on the frontlines should get vaccines, but I too believe that our government should be more concerned about looking out for those most vulnerable to Covid-19. Since the time I drove to my parents’ home last March, I’ve made several trips back and forth because I’m not entirely comfortable living in New York until I get vaccinated.
As someone born with an incurable chronic illness, I grew up aware of my invisible vulnerability. Being both young and sick, my struggles often did not register as important to anyone outside of my family because they weren’t shared by enough of my classmates. The vaccine distribution priorities sadly come as no surprise to me, but I do feel deep disappointment of the injustice against my community.
If leaders across the country continue to abdicate their responsibility of figuring out a distribution system that sees everyone, I know plenty of disabled people who are willing to step into an advisory role, happy to make it their priority.
At a time that should be provoking deep empathy and meaningful action for those who are sick and disabled, we are falling short. We need to reconsider the ways in which we are leaving sick and disabled people behind once again, amidst a global health pandemic.