Survivors, long-haulers and the immuno-suppressed are a latent force for change.
Losing a loved one changes each of us personally, but when many are lost at once, the trauma changes society. As the Covid pandemic ends its second year and the death toll in America inches inexorably toward 1,000,000 souls, a majority of Americans want this time of disruption to be over. According to a recent Monmouth poll, seven in ten agree that “it’s time we accept that Covid is here to stay and we just need to get on with our lives.” At the front edge of that fatalistic attitude are self-identified Republicans, 89% of whom support that sentiment, while just 47% of Democrats agree.
As much as we all wish it were over, the question remains: How will our lives be changed? What lessons will we take from this time and how will they be converted into new political realities? Will the Right succeed in framing the pandemic as a time of governmental overreach, even “tyranny,” sweeping newly activated constituencies of over-stressed parents and angry business owners into its ranks and reclaiming the upper hand in Washington? Will the Left emerge from its self-imposed virtual lockdown and organize more effectively among the embattled health workers, teachers and service workers who have borne the brunt of Covid’s stresses? Or will there be some new as-yet unseen political formation built, rooted in the undeniable truths of those most directly harmed by Covid, the bereaved and the long-haulers and the hidden minority of immuno-suppressed people for whom a return to “normal” isn’t possible?
While much attention of late has been focused on demands to lift mask requirements and “re-open” society, with the “freedom convoy” movement shrewdly pulling people tired of the conflicting government pronouncements and policies into rightwing paranoia and conspiracism, the fact remains that a majority of Americans have abided by the restrictions our leaders have imposed, getting vaccinated and social distancing as necessary. How will that majority see its experience of the pandemic validated?
Recently, I spent an hour in conversation with Kristin Urquiza, the co-founder and self-titled “chief activist” for Marked By COVID, an organization of survivors and long-haulers that she and her partner launched after her father Mark died of Covid in June 2020. Since then, the “honest obituary” she wrote for him has gone viral, she was invited to speak at the Democratic National Convention, and Marked By COVID has developed a network of newly politicized activists around the country. There is an undeniable power to her story: her father shouldn’t have died. As she wrote in his obituary, “His death is due to the carelessness of the politicians who continue to jeopardize the health of brown bodies through clear lack of leadership, refusal to acknowledge the severity of this crisis, and inability and unwillingness to give clear and decisive direction on how to minimize risk.”
Unlike the “freedom convoy” and other movements on the Right that want to sweep Covid into the dustbin of history or turn it into another reason to dismantle public institutions, Marked By COVID is demanding two things of us. First, that we establish a national Covid Memorial Day, the first Monday in March, to properly memorialize the dead. And second, that we create a national nonpartisan commission, similar to the 9–11 Commission, to investigate how the pandemic was handled and make recommendations for the future.
Marked By COVID is not a big organization. As you will learn from this lightly edited transcript of our conversation, it is entirely volunteer-driven and funded. Big philanthropy and existing advocacy organizations appear to be paying little attention, due to a fear of taking risks and all-too-familiar bureaucratic inertia. And yet, Marked By COVID is making headway. Its demand for a national commission has bipartisan support in Congress. Bills to create Covid Memorial Days are beginning to spread in state legislatures. Organizers should take note: Unresolved grief is a powerful force. As we transition into the next chapter in this crisis, it may yet be channeled into a force for positive change.
Our conversation took place on January 31st. Here is part one.
Micah Sifry: How do you organize? You have a very broad kind of potential constituency — anybody who’s been affected by COVID, to the point of losing a loved one. And in the context of the pandemic, where face to face organizing is really tough?
Kristin Urquiza: Prior to doing this work, I was working the international side of stopping deforestation to protect indigenous lands, and to keep big trees in the ground. And I had gotten my start out of college as a community organizer working on environmental issues in the Midwest. So it’s been a lot of time knocking on people’s doors, holding community meetings at rec centers, and at senior citizen centers, and doing phone banks in a room full of individuals on originally landlines and then cell phones.
I had never really set out to start an organization. And I definitely wasn’t looking to start something in the context of the pandemic, I was satisfied with what I was doing. I had just gone back to school to get a mid-career masters to focus on public policy and sharpening my skills around how to develop equitable based policy, and was kind of thinking about a transition career-wise from environmental to economic justice. And when my dad got sick, all these issues I cared about just really came to the surface.
He got COVID just a couple of weeks after the state of Arizona reopened back in June 2020, and, as you probably know, he was a Trump supporter. He also voted for the governor. So when the two of them were on their PR spree saying “we’re on the other side of this, it’s safe to resume normal activities,” my Dad didn’t have any reason not to believe them. And while he was a believer in the virus and that it was dangerous to begin with, our conversation started to change once the state started to reopen. That is, ultimately, what led him to make poor decisions that then ended up costing him his life. And that trend of disinformation and poor policy and terrible leadership was spurred by what seemed to be the Trump administration’s desire to get reelected.
The other thing that was happening in the context of my home community where my mom still lives was that while other places have the tools and information that they needed to make better decisions for their communities, that wasn’t the case for my neighborhood, which is 75% Hispanic and 40% immigrant. It had no tests, and no resources about public health measures in Spanish or other languages. It was just really seeing this complete collapse of our health systems and health inequities, coupled with my dad getting sick. And my decision was also in the wake of the uprisings from the brutal murder of George Floyd. It was very much one of those sort of, well, if I don’t say something who else will, moments.
I preface our conversation with that, because I really see Marked By COVID not only as helping individuals tell their story, find tools and community to advocate, but also as an organization that breaks past a lot of the silos that exist in the world of social change. So the challenges don’t only exist in the fact that we’re in a pandemic and we can’t talk to people face to face. There’s a whole other set of challenges as well, when you think about sustainability and bringing a fledgling organization to the forefront. It’s been challenging to help expand the imagination of people to really deal with COVID, because we all want it to be over. And COVID didn’t exist two years ago. It’s not like this is in people’s strategic plans, or they have capacity set aside. So to go about making professional contacts, whether that’s with well-established organizations or with funders in the funding universe is just a total nightmare. And so this is why I never wanted to start an organization because this is challenging.
Micah Sifry: Sure. But you did start an organization. And that was partly starting from your own experience, which nobody could challenge the truth of. Going public with your story must have drawn not just attention but resources your way. How has that played out for you? Have you been able to convert attention and sympathy to the resources that you need to organize?
Kristin Urquiza: Not to the level that it needs to. To date, a majority of our organization is still supported by a small donor base, which is great for long term sustainability. But it’s also challenging in the sense that we don’t have the sort of foundation capital grants to be able to add on the staff that we need to be able to manage what we’re doing. And so currently we have a core team of four volunteers, myself included, have who have been running the show for the past year and a half. And we’ve been in a process for the last six to nine months of starting to court and identify institutional funders, which, in my previous life, I actually had a lot of experience doing. So it’s not as if I’m not familiar with the process.
But there are four things that I get quite often on this front. One is “Oh, my God, you’re amazing, you’ve done so much with so little.” And then the next three things I get are first, “COVID is over, we’re not going to have to worry about this.” It’s been a little less so in the last month, not to say that I’m excited about this [Omicron] surge. I’m currently getting over COVID myself, which is why I have a scratchy throat. And I have no idea how I caught it, because I’m like a hermit in this room all day. The other two kind of things are, well, “This is mission creep — we’re already at capacity.” And then the last one, which is “This isn’t in our strategic plan.”
So a lot of what I’ve been doing over the course of the last nine months with the funding universe is education on what movement building is about, and education about this entire new constituency of individuals who have lost their loved ones or have long term health issues, who sit at the intersection of these different silos, and also educating about the potential, that we have to actually really bring urgency to some of the issues that all of us have cared about for a really long time. Because we have the consequences of inaction right at our fingertips.
Micah Sifry: I think one of the tricky things in trying to organize around a health crisis is who are the base. I was talking with a friend of mine the other day, who just stepped into a role assisting an organization that works on ALS. And just in passing, he said, well, one of the challenges that is that there’s no survivor community. Some people live longer than others. And some of those people have been incredibly effective advocates. But there’s no survivor community. It really stopped me in my tracks, I hadn’t really thought about it that way. That there’s this window that people are in for a brief period, and then they can’t speak anymore.
Covid seems to me to be a little bit more complicated because it’s a crisis experience. And there’s also long haulers, right? And then there are all the secondary people who are, as your group is called, marked by Covid because they have to become caregivers or because their lives are turned upside down. So when you think about trying to actually organize people, what is the archetype of the person you’re trying to organize?
Kristin Urquiza: Great question. While there is room for lots of different individuals, we define our community by two core types of individuals: People who are long-haulers. And then people who have lost a very close loved one to Covid. So a spouse, a child, a sibling, a partner, that type of individual. People who are dealing with very acute grief. Also, a lot of times folks who are forced into situations where they are caretaking somebody who survived COVID and now are permanently struggling.
The idea of Marked By COVID originally was to encapsulate this idea that we’re all going to be changed in a way by the pandemic. This is a mass disruption event. I never would have guessed a year and a half ago that we’d still be at this kind of level of crisis, and that so many more people would be marked by Covid. I don’t know tech very well, but I live in San Francisco, so you kind of are forced to grapple with it. They’re always talking about disruption, right? Well, this is disruption. So let’s treat some of the broken systems that got us here in the first place.
Micah Sifry: What you’re doing is important because you’re trying to exist in this new disrupted environment, while it seems like many, many institutions in society are yearning for the moment when we can go, quote, back to normal. And, and that’s understandable because they’re not at all psychologically or logistically prepared to have to make radical changes.
I have been struck by how much it seems that the Right is doing more than the Left in terms of supporting new formations that are responding to the disruption. For example, they are organizing parents, who are understandably very stressed, especially parents of school aged kids who have been whipsawed by the lockdowns and been asked to be the educators of last resort when they’re absolutely not in a position to do that. Here you see the Right jumping in with new groups like Moms for Liberty, and these are organizations that somebody had a budget for somewhere. Somebody had a place in their strategic plan.
And what you’re saying is that in your experience, on our side of the spectrum, you’ve yet to encounter foundations or major benefactors with the same degree of flexibility to be able to say to you, “You know what, you’re onto something, I’m not exactly sure where it’s gonna go, but here, run, go figure it out.” So, that, to me, is really distressing, the idea that our side doesn’t have that flexibility.
On the other hand, I could see, people saying you’re trying to do so much you won’t end up with the nucleus of something that’s replicable. Good organizing is about figuring out a strategy that has a progression to it, that you can replicate. And so in terms of the actual work that you are doing, I can see, there’s an educational side, about getting good information to people. There’s a bit of community organizing through Facebook to funnel people into state level Facebook groups. It feels kind of spread out. What have you found in the things that you’ve tried to do? What seems to have gained some traction? or what have you learned from the experiments that you’ve done?
Kristin Urquiza: It’s been a lot of learning. For example, prior to this, I had a social media presence, but my rules on social media were only talk to people that I knew in real life. And when I shared my story publicly, the number of people coming at me through a variety of social media channels, I never would have predicted that. It created a pipeline of bereaved people who were asking me for help. They wanted to know, “How do I share my story? How do I do what you’re doing?” And so our main way of finding people is through Facebook, Twitter, and to a lesser extent, Instagram. I toggle between the various platforms and do my best to work with people where they’re at and bring them on to an action that makes sense.
We have a couple of main priorities. One is memorialization and advancing a COVID Memorial Day. We also are working on organizing ourselves around being the leading group to push for a COVID Commission. For the 9/11 Commission, the families were very integral. So we have a committee that’s working on a whole set of recommendations and values and recommended commissioners for that project.
We do a lot of zoom meetings that are both focused on education and community building, but also very specific actions that people take within the context of the zoom, we work to set up systems to help really break down the actions for individuals. One thing that I have found is that a lot of people who are involved in this work have never done anything political before. And that is really exciting. And so, some of the trainings are as simple as “this is how you look up your legislator,” and then we’ll pause and people will do it. And we’ll come together and share on that.
Tomorrow, I’ll share the second half of my conversation with Kristin Urquiza, where she discusses the challenges of organizing safely during the pandemic, and we imagine together what a national Covid Memorial Day could accomplish.