How Marked By COVID is organizing to insure we don’t forget those we’ve lost
Yesterday, I shared the first half of my conversation with Kristin Urquiza, the co-founder of Marked By COVID, which she co-founded to organize Covid survivors and long-haulers to fight for recognition, accountability and justice for people most harmed by the pandemic. At this point in our conversation, we turned to the nitty-gritty of their organizing work, how they manage to build human solidarity and capacity. We closed by looking at how the Biden Administration has struggled to develop a coherent response and where that leaves the work.
Micah Sifry: So a typical Zoom meeting is how many people? Is it local? Is it national? What’s going on?
Kristin Urquiza: So I run our national meetings, which are once a week. And then states run their own meetings, which are typically twice a month depending on whether there’s a lot of stuff going on in the state level. And our task forces that are working on specific issues decide how often they want to meet depending upon the priorities they set for themselves. In many ways it’s very bottom up versus top down. We also have a community advisory board that we are working on giving the power to make strategic decisions about the focus of our work. And we’ve been developing a public health and scientific advisory board, working with public health professionals across the country that are pushing back on a bunch of these harmful narratives and doing it in loose coordination with one another. But when I take a step back and look at what’s working, what’s not working, I feel fairly confident and excited about the progress that we’re making.
Micah Sifry: The national weekly meeting, is that open to any member? Typically, about how many people come?
Kristin Urquiza: We have anywhere around 50 to 60 people that that come.
Micah Sifry: Do you feel like you’ve got a group of regulars?
Kristin Urquiza: Yeah, definitely, people know each other. We’ve done community art projects together, we’ve hooked people into memorial projects that are happening across the country. I’m always looking for other folks that are doing really cool stuff.
Micah Sifry: Where do you fit in the ecosystem of other advocacy or organizing efforts that have stepped into the gap, or stepped into the disruption? Obviously there were frontline groups that came together really fast to work on the problem of PPE — the supply chain problems and distribution problems — like ProjectN95. It was not so much the care issue, as just helping frontline health care workers get what they need in height of the crisis. There was a similar network that stepped into the data gap that some journalists started and that they ran for about a year or so — the Covid Tracking Project, which came out journalists at The Atlantic magazine. And then on the health care side, some academic programs that are monitoring the pandemic which are not so much about organizing or activism. And then there’s you and Right to Health Action. How do you relate? Because I think they are, like you, trying to step into the breach. Do you see yourselves as basically plowing the same turf? Or are you collaborating? How do the two groups relate?
Kristin Urquiza: We collaborate a ton. Right to Health originally came on the scene more focused on organizing healthcare workers and others on the frontline of justice issues in the Covid space. And we were bereaved folks and long Covid people. From a policy perspective, they developed a people’s prevention plan that was focused on vaccine equity, while Marked By COVID developed a five part policy platform that focuses on resilience, restitution, recovery, recognition, and relief. They were focused more on health care workers and public health workers, while my vision for Marked By COVID was that we would always be the experts from the lived experience perspective, in terms of what this pandemic has done to normal everyday people and ensuring that those folk’ stories, and the wisdom from that lived experience wasn’t all lost as we figure out how to rebuild and recover.
We do a lot of Member of Congress meetings together. We’re in several coalitions together. I really think of them as the leaders on issues like global vaccine equity, and they see us as the leaders on memorialization as well as some of the issues around health equity here in the US. So we try to complement one another. That being said, there are times when it does feel there are some redundancies but we know each other very well and have really open lines of communication. It’s never felt competitive.
Micah Sifry: I wanted to go back to something that you said before to open it up a little bit more. How much more could you do if you could meet face to face?
Kristin Urquiza: One question I have heard over the course of my time organizing has been when are you going to have the big walks, as are often done around other diseases? There’s two things that come to mind when I think about that question. One is just the safety issue. But then for a lot of our activists, it’s actually been a benefit to be able to have online communication, because a hefty percentage of the people that I work with are not well. And so while it is isolating to be alone, sitting in a room with someone unable to hug them when they’re telling you the story of their loved one that they lost, it does actually also allow for more smaller connections, than I would have.
Micah Sifry: Do you see that happening among the members? Is there much cross pollination?
Kristin Urquiza: I am on a number of text threads and I know people have their own depending upon what they’re doing. For example, with me getting COVID, I didn’t tell anyone at first for a couple of days, until I was sure I was going to be better. And I told a couple of people and then it soon caught fire that I had had had gotten COVID. People have developed really close relationships with people all across the country. One of my favorite memories of this time was last year on New Year’s Eve. I was by myself. And I ended up staying on a zoom call for like, 12 hours, where people that I had never, I had never met in person. They jumped on and off, and it was just like, all parts of this community of people who organically came together to be with one another, at this time where traditionally you would be with your family or your friends.
Micah Sifry: The degree to which you make friends as part of getting involved in a movement has a very big impact on whether you stay involved. And so I worry a lot that in the Zoom era this very two dimensional form of communication can only get so far in deepening relationships. It’s not that much fun. Even if you get good at using Zoom.
Have you had time to look at how other movements around health justice have organized? Have you had any chance, for example, to look at the history of Act-UP?
Kristin Urquiza: I have in the last like four months gotten introduced to and gotten closer to a couple of folks who were part of ACT-UP and are still working in the intersection of HIV and chronic illness. And I think that is probably the largest learning window that I have been really grateful for. Because for me personally, the hardest part of a lot of this has been that it’s always lonely,
Micah Sifry: It’s always lonely at the leadership level of an organization. Having been there, if you can find other executive directors or founders who are peers in some way to commiserate with or to trade thoughts and support with, that can help. But it’s inherently a lonely position to be in, especially if you have to supervise other people or make decisions about people’s roles in an organization. Somebody’s got to do it. And it’s a thankless job.
But it’s so great to hear that you’re connected to some people from the ACT-UP generation. The role of the weekly meeting for ACT-UP in New York was really a very powerful example of what can happen when a group of people in crisis, either personally because they were ill, or because they had loved ones, when they meet face to face, how much energy and creativity got unleashed in that crucible. I question whether you can get the same thing out of Zoom, Facebook, or Instagram, kinds of conversations.
I think you’re right that Covid is going to be with us for a long time, and that most of our organizations haven’t really adjusted. Or because it’s so pervasive, everybody’s dealing with it, each in their own way. But because it’s so generalized, it doesn’t then get concentrated into some new form of activity. As we were talking, I was imagining what a moment might be where we figure out how to elevate it. The day before Biden’s inauguration, they had a ceremony at the Lincoln Memorial that was very brief, but very powerful. It was also at a moment of high emotional intensity, because we were all still wondering, is he actually going to be inaugurated? But to start with a recognition of all the people we’ve lost, that was a supremely powerful moment.
And then they didn’t build on it. The Biden Administration talked about creating a COVID Community Corps to mobilize civic organizations to be involved in spreading vaccine awareness. But I don’t think they ever developed a strategy to raise that up another level. The COVID Community Corps was mostly about “Here’s a social media post about how to get vaccinated that you can share.” That felt very, very thin. And then they tried to declare victory too soon. The rest is history, this is where we are.
So it doesn’t feel like the story’s over in terms of what the organizing opportunities may be. Who knows, maybe the thing should be is that if we get out of Omicron, and things start to open up, and the numbers really drop, then the demand needs to be: Wait. We just lost nearly a million people. We need a national day of mourning. We need a national day where we stop, and we collectively show up for each other. And then that allows you to then maybe raise the whole game up a level?
Kristin Urquiza: It’s great to hear you come to that because that’s what I think too. We have bills in the House and Senate to recognize a day of mourning. We also are organizing a virtual vigil on March 7, which would coincide with roughly when the pandemic started. This is not only about all we’ve lost. One thing that I have seen through my organizing is that I have never been in community with so many people that don’t necessarily identify like me. More than any other issue I’ve been on this has been so diverse in terms of who is impacted. And so part of the case that we’re making is that a COVID Memorial Day could be a tool for helping to unite the country. Our grief in this moment, our collective grief, is a way to see one another again as human beings and recognize all we’ve been through.