“It’s fine, you don’t need to worry. It’s not a big deal. Only certain vulnerable populations, like the elderly and those with certain preexisting conditions, will be affected.”
I read this message or some variation of it over and over again in the early weeks of the COVID-19 outbreak. It came from many people and many places. It was on Twitter, on TV, in newspaper articles. None of the people who gave this message seemed to consider the possibility that they might be delivering it to someone who could fall into one of those categories of vulnerable populations — nor did they seem to notice that it painted those populations as being disposable.
And indeed, this feeling of disposability and invisibility has been shared by many in the disability community in the wake of the coronavirus.
Today, I wiped a small patch of skin down with an alcohol swab, pinched a small section of my belly and injected my subcutaneous tissue with an immunosuppressive substance known as a biologic. I do this regularly, and I have since high school.
These medications, along with others I take — including low-dose methotrexate, a form of chemotherapy — work to intentionally suppress my immune system.
I take these types of medications because I have an autoimmune disease, meaning my immune system mistakes healthy tissue for being “bad stuff” (viruses and infections) and attacks itself. When my immune system is in overdrive, I am sick and my illness flares. Weakening my immune system gives my body a chance to fight back against itself. It also weakens my ability to fight off the actual “bad stuff” — for example: the coronavirus.
The lens of my experience has come into play in several ways since the outbreak — the first and foremost being that I am vulnerable to the coronavirus, and that it would affect me in a way that would be significantly worse than if I had a healthy immune system should I contract it.
Another is that in a way, I’m more prepared: I’ve been immunosuppressed for enough time that long before the panic over COVID-19 hit, I carried around wet wipes and hand sanitizer, washed and moisturized my hands meticulously multiple times a day, made sure to stay stocked up on soap and Clorox, always looked at the free samples at Costco with wistful longing but never took one, and, yes, even learned how to be careful to not touch my face.
I think of navigating public health as being similar to driving a car: Even if you’re a good, safe driver, you can still get into an accident because you can’t be sure other people on the road are also good, safe drivers. I learned a long time ago that I have to be careful when it comes to these sorts of precautions because other people won’t be. I have to value my health because other people will not. I have to take the risk seriously because other people aren’t. And the way people have spoken about the coronavirus has also reminded me that I have to value my life — because other people do not.
Disabled people, as well as the elderly, have been talked about as if we’re disposable. I’m not talking about the incredibly difficult decisions being made by the hardworking doctors in Italy and other areas who are having to figure out how to distribute supplies with a critical shortage of resources.
I’m talking about tweets assuring people that no one of importance would be affected, the president’s total denial about the severity of the situation, Sen. Lamar Alexander’s move to block legislation that would require employers to give workers two weeks of paid sick leave during public health emergencies, and employers who are refusing to give paid sick leave, particularly to those in low-wage positions such as food service workers and home health aides, who especially need to be able to stay home if they get infected.
I’m also talking about things like the sudden availability of accessibility for remote work and remote education — despite the fact that many disabled and chronically ill people have been denied such accessibility in the past — that tell disabled people we don’t matter enough to make an effort for.
I’m talking about things like the lack of testing availability. I’m talking about things like people disregarding the advice of scientists — advice like: You don’t need a mask unless you yourself are sick; immediately begin to socially isolate yourself; wash your hands, wash your hands, wash your hands — because they’re not worried about a flu. I’m talking about hoarding resources, which leaves the most vulnerable populations unable to access them or afford them as sellers raise prices based on demand.
And, yes, I’m talking about things like the lack of support for policies like “Medicare for All” in light of a pandemic that demonstrates how and why free health care is so important.
Six in 10 adults in the United States have a chronic condition, according to the Centers for Disease Control and Prevention, and 4 in 10 have more than one. I’m one of those with multiple chronic illnesses (or “comorbidities,” if you want to get fancy about it).
I’ve long known that I’m the No. 1 person looking out for myself, my health and my well-being when it comes to me being immunosuppressed. But finding out that so many folks haven’t been disinfecting their phones and doorknobs — and worse, the “Is it REALLY necessary to wash your hands after going to the bathroom?” conversation that erupted on Twitter — did not inspire much confidence in my fellow humans to take care of themselves or others.
Those most negatively affected by this pandemic are the most vulnerable — those who are disabled or chronically ill, those who do not have access to things like clean water and soap, those who cannot avoid public transportation, who will be afraid to take a day off, who will be afraid to seek medical care for fear of deportation, who will avoid getting medical attention because they simply cannot afford it. These are the people who are most affected when you decide you don’t have to pay attention to this, when you decide you will be fine, when you oppose paid sick leave, when you ignore what doctors are saying about how to “flatten the curve.”
“Show immunocompromised people that you know that we matter, and take small steps to show us we’re not alone in facing this daunting virus.”
Yes, you will have to actively change your behavior because of other people. This is going to be significantly harder since our country isn’t taking the same steps as other nations, such as guaranteeing paid sick leave, suspending mortgage payments and other measures, to discourage those infected from leaving their homes.
If you get sick, please stay home. I’ve been homebound before, and I know it can suck to be stuck inside in isolation for so long. Find some Netflix shows to binge, eat some SpaghettiOs or declutter your email inbox — just stay home, please. (It’s easier said than done for those living paycheck to paycheck who’d lose out on two weeks of income ― I don’t have an answer for that, except to continue to push your government officials for paid sick leave.)
This is one of those situations where our actions become about more than just ourselves. Your decision to go to a club despite feeling unwell, your neglect to wash your hands after touching the banisters in public stairwells, your dismissing the outbreak as something you don’t have to pay attention to because it won’t affect you — there is a very real likelihood that those sorts of behaviors will have a very real impact on those like me, who do have compromised immune systems.
The best thing you could do to keep others safe is take precautions. Learn about social distancing. Avoid going out into crowded places, wash your hands frequently and stay home if you feel sick. Fight for paid sick leave. I’m asking for your help in keeping me and others like me safe.
Show immunocompromised people that you know that we matter, and take small steps to show us we’re not alone in facing this daunting virus.
If you care about people, then care about vulnerable people as well. Take care of others by taking care of yourself — not just now, but after COVID-19 has slowed its spread, too. How we talk and what we do now matters. We’re here, and we are not disposable.