Do we just not care?
I overheard a conversation yesterday that really depressed me. I was waiting on line and a couple of younger women, probably in their mid-20s were talking about how glad they are not to be wearing masks anymore. (I was wearing one, as I still do when I’m waiting around for periods of time indoors close up with strangers.) Anyway, one of them casually said that it was probably a good thing that COVID came along when it did because it means that the baby boomers would all be dead sooner. The other one laughed and they moved on.
I was often a horrible person when I was young too so I don’t blame them that much for their lack of empathy. But it made me feel terrible anyway. Then I read this and it is a beautiful discussion of this very subject:
“Covid-19 need no longer control our lives,” President Biden announced in the State of the Union address, speaking to a room of unmasked though back-room-tested members of Congress. He then offered, magnanimously: “If you’re immunocompromised or have some other vulnerability, we have treatments and free high-quality masks. We’re leaving no one behind or ignoring anyone’s needs as we move forward.”
But that’s not exactly true. Throughout the pandemic, immunocompromised Americans at higher risk for serious illness from Covid, or those who, like me, live with vulnerable family members we are desperate to protect, have often found ourselves feeling like an unfortunate parenthetical. We are acknowledged, but easily forgotten.
The pandemic isn’t over and yet, as another subvariant spreads, there is little real regard for those whose ability to participate in society hinges on the behavior of everyone else. We have all suffered from isolation, indisputably. But the rush to roll back precautions appears to abandon some to remain isolated forever.
It seems no one knows what it would look like to do otherwise. That’s in no small part because society has rarely taken the most vulnerable into account when it comes to how daily life is navigated. Not during this pandemic, and certainly not before it. The greatest good for the greatest number invariably implies the existence of an expendable few.
Ever since I moved to the precarious side of society (my 13-year-old daughter received a liver transplant as part of her cancer treatment in March 2020), I have been thinking about what we owe the vulnerable. I constantly wonder: Was I truly aware of such precarity before I found myself here? Who would I have been had I continued a life lived only among the well?
“There is always a sense that this is a very tiny minority of the population and that you are asking an unreasonable number of people to make a sacrifice for a very small group,” said Dr. Boghuma Kabisen Titanji, an infectious disease specialist at Emory University. “When you look at the definitions of what makes someone more vulnerable to Covid,” she explained, it is a significant proportion of the population “that we essentially are failing to offer protections to.”
Estimates suggest about 3 percent to 4 percent of Americans are immunosuppressed. Some fall into the same category as my daughter, who takes daily drugs to tamp down her immune system. Cancer patients often have their immune systems temporarily wiped out during chemotherapy. Others have conditions or diseases, autoimmune and otherwise, that alter their ability to fight infection. In all, somewhere north of seven million people, not counting their loved ones, fall into this woolly space. And that number doesn’t include children younger than 5 who are not yet vaccine eligible, though they fare better than adults on average. (During the Omicron surge, the United States reported the highest numbers of hospitalizations for children under 5 since the pandemic began.) To be sure, there have been a few hopeful studies showing our loved ones would survive Covid, but none of us want to be part of the experiment to see if that bears out.
I understand that in the big picture, we are not so many; accommodating us can feel onerous. But this is only one way to see the problem. What if we also calculated the benefits of teaching empathy and inclusion?
In other words: What if we could see this time as an opportunity for a correction? Covid broadened the scope and definition of vulnerability, allowing everyone, however briefly, to viscerally understand the need to protect one another. We worried over our aging parents, our asthmatic selves. We were “all in it together,” clapping each night for the brave frontline workers. What if we applied that understanding going forward? What if we no longer thought of the world as so blithely divisible? Instead of a return to how life was, unconscious of those who are unable to accompany us, why not situation-specific considerations for different populations?
In practical terms that could mean, say, that the family of a child undergoing chemotherapy might ask her classmates and teachers to don masks to protect her against Covid (and other diseases like flu), without having to sue the school to comply. Offices might create masked spaces or offer on-site testing and flexible work arrangements. Restaurants would continue to protect the staffs by asking patrons to present vaccine cards and not show up ill.
Returning to what once was is not possible for all; we need, instead, a new normal, one that recognizes that everyone deserves the chance to participate in daily life. As the philosopher Martha Nussbaum suggested to me, we might start by simply asking the vulnerable what they need.
Thirteen orchestras nationally, including the Chicago Symphony and the Boston Symphony, have done just that. Led by WolfBrown, a research and consulting firm, the Audience Outlook Monitor Covid-19 Study is a continuing effort to gauge what allows audiences to feel comfortable enough to return. (Orchestras often have older audiences, who can be at higher risk.) So far, most patrons say they still want masks in place, though the numbers are trending downward. A survey conducted by Theatre Washington, an umbrella organization working with Washington, D.C., theater organizations, also found a preference for keeping masks on.
“Arts groups are really good about accessibility,” WolfBrown’s managing principal, Alan Brown, told me. “They have been doing that for a long time for people with various disabilities and abilities.” Still, right now, he said, the focus is more on filling seats than long-term changes. “The notion of accessibility has changed and our sector has yet to really figure a response,” he added.
Couldn’t some performances simply remain protected, even if mask requirements fall? I don’t mean special, one-off performances. I mean that we might require masks for some performances for the foreseeable future or designate specific areas of the theater for compromised individuals, offering inclusivity in perpetuity.
After all, it is not as though Covid has disappeared. The BA.2 variant is on the rise. Just as mask mandates fell, the White House announced that money has dried up for free testing and vaccination for the uninsured and for the purchase and distribution of monoclonal antibodies, a treatment for Covid-19 that is still not readily available.
Thus we are dismantling the safety nets, even as the United States sees around 600 deaths a day from Covid. While those at highest risk are the unvaccinated, “when you look at the metrics of what determines when we should be scaling back these protections,” said Dr. Titanji, the infectious disease expert, “are we focusing on the right groups in determining what is acceptable in terms of how much excess death we are willing to tolerate? Because essentially these excess deaths are happening disproportionately among the groups of people who are the most vulnerable in society.”
Dr. Dorry Segev, director of the Center for Surgical and Transplant Applied Research at New York University, notes we can’t really compartmentalize the problem, thinking it’s only a risk for some. That’s because variants can incubate in the bodies of those who cannot fight off infection, and to those, we know, we are all potentially vulnerable.
If a society catered to the whole population, then a decision to continue funding for free testing, vaccines and masks would be viewed more holistically. And if we don’t want to push, at minimum, seven million Americans and their family members to consider avoiding flights and theaters and schools and trains, then we have to think creatively. In this scenario, we would have to be far more practical and far less political and also willing to experience some minor discomfort for the sake of others.
What would it mean to actually confront this choice as a society?
I asked Martha Nussbaum about her focus on society and vulnerability in her work. What she is calling for, she told me via email, is “for a society that as a matter of basic justice and rights protects our vulnerability in many ways.” This would mean expanding comprehensive health insurance and crime prevention, and addressing discrimination and unsafe work environments. “We ought at this moment to take stock of our nation, asking where we are and what we have achieved, and where we have failed,” Dr. Nussbaum said.
I keep thinking of failures — of education, of empathy, of imagination. It is a time, Alice MacLachlan, a professor of philosophy at York University in Toronto, wrote to me, when we might also notice the carelessness, fear and arrogance that accompany our relationship to wellness and illness. Carelessness about how our choices affect others. Fear we might ourselves become unwell. Arrogance in our surety that we will never fall on that side of the ledger.
In my life, I sometimes sense a distancing from others that ranges from pity — a murmur of that poor family, they’ve gone through so much — to active avoidance. To be unwell is to be other. Woebegone. I am not you. The empathy gap gives general society a skewed idea of what it means to be or become vulnerable, and how close we all live to it.
“One of the tenets of ableism is that it combines the idea of strength with not being sick, and that you let sickness happen to you if you are weak,” said Steven Thrasher, an assistant professor at Northwestern University and the author of the coming book “The Viral Underclass: The Human Toll When Inequality and Disease Collide.” “And it’s a shame that this pandemic has not created a better sense that we are all vulnerable.”
I know everyone is fed up. I wonder whether it is unfair for me to insist others care. I am a special request. I am a problem. I like the rules. The more the world opens up, the more cornered I feel. I do not want us to return to isolation.
My daughter, for her part, thinks that I am overly concerned, that I, too, should relax and return to “normal” life. She doesn’t see me, behind the scenes, desperately arranging the parts of the world within my reach to try to allow her to remain in it.
What I’d like is a society that really sees her and her sister. A world where we are not a dismissible percentage, but people who add value and are thus worth considering and accounting for. I want society to welcome us to participate. Until now, I have been too exhausted to be solutions-oriented. We have just been trying so hard to survive. We shouldn’t have to be alone, worrying about this, scrambling for answers.
“The irony is, if we made vulnerability less stigmatized, less isolated, less shameful and invisible,” Dr. MacLachlan wrote to me, “we might be less afraid of it. This is an opportunity given to us by the pandemic that we are throwing away.”
Old people too, are apparently expendable.