Long COVID Awareness Day is gaining official recognition around the world, driven by a growing network of people with Long COVID and their allies. In our season two premiere of Still Here, hosts Betsy Ladyzhets and Miles Griffis talk to Nicholas Rodelo of Clean Air Los Angeles about how he and his fellow organizers secured a City Council resolution recognizing Long COVID Awareness Day, and how they hope to leverage that into further action.
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- Intro and montage of awareness day efforts
- Interview with Nicholas Rodelo from Clean Air Los Angeles
- Outro
Transcript
Intro and montage of awareness day efforts
Melanie Marich: [00:00:00] Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.
In this episode, we’re talking to organizers pushing their cities to recognize Long COVID Awareness Day.
Nicholas Rodelo: For a community that is so large and has such little recognition by the public, any visibility of that, however small it starts off, is very important.
Miles Griffis: I’m Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets. We are the co-founders of The Sick Times.
Melanie Marich: And [00:00:30] I’m Melanie Marich, your new podcast producer for Still Here.
Miles Griffis: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the Long COVID crisis.
Betsy Ladyzhets: But here at The Sick Times, we are bringing you the latest news and commentary that matters to the Long COVID community,
Miles Griffis: without pandemic, denial, minimizing, or gaslighting.
Betsy Ladyzhets: Welcome to a new season of Still Here, and welcome to our new podcast producer Melanie.
Melanie Marich: Thanks, Betsy. Thanks, Miles. I am so excited to be here for season [00:01:00] two and for this premiere, which is happening during International Long COVID Awareness Month.
Miles Griffis: For our season two premiere, we’ll be hearing from organizers from around the country fighting for Long COVID recognition.
That includes an interview with Nicholas Rodelo from Clean Air Los Angeles.
Betsy Ladyzhets: But first we asked Sick Times readers to tell us about their Long COVID Awareness Day events and actions, and to tell us why they think those events and actions matter. We heard from organizers in Austin, Texas, where the City Council successfully [00:01:30] passed a Long COVID Awareness Day resolution.In Vermont, where the state Senate also just passed an awareness day and month resolution.
And in Maryland where advocates are lobbying for a pending bill that would support Long COVID research. Here are some of those voices.
VT Senate Floor: I bring this to you from the Senate Health and Welfare Committee members. And ask that you support the resolution recognizing March as Long COVID month
Adam Van Bavel: In 2020, something obvious occurred.
SARS-CoV-2 [00:02:00] hit. We entered a pandemic. COVID infections created Long COVID.
Katie Drackert: While COVID is often described as mild, I’d say that mild is the perfect descriptor for taco sauce, but not an airborne illness that has catalyzed a mass disablement and upended countless lives.
VT Senate Floor: It’s an emerging disease, but if there are over 20 million people with it, and the emerging disease means that we’re learning more and more about it and how to help people who have developed a [00:02:30] disability with Long COVID.
Adam Van Bavel: So that is what makes this month, that is what makes our event so important is drawing to light disability, its impact on the overall health and wellness of our workforce, our economy, and society in general.
Katie Drackert: After so many years of being silenced, ignored, and left to figure it all out for ourselves, it is incredibly promising to see city Hall full of people wearing teal today.
VT Senate Floor: [00:03:00] The question is, shall the resolution be adopted? All in favor say, aye.
VT Senate Floor: Aye.
VT Senate Floor: All opposed, nay. Ayes have it and we have adopted the resolution.
Miles Griffis: If you wanna read more about the different events across the US and around the world that commemorated Long COVID Awareness Day, check out Betsy’s story on our website.
Interview with Nicholas Rodelo
Melanie Marich: Betsy and Miles spoke to Nick from Clean Air Los Angeles just a few days before LA’s City Hall lit up teal for Long COVID Awareness Day. He told them about the journey of getting this recognition and why it [00:03:30] matters for the movement. Here’s that conversation.
Nicholas Rodelo: Yeah, my name’s Nicholas Rodelo. I’m affiliated with Clean Air Los Angeles, and I’m talking from Los Angeles today.
Yeah.
Betsy Ladyzhets: Yeah. Well, thank you so much for coming on Still Here, and especially joining us for the premiere of our second season, uh, which is of course talking about Long COVID Awareness Day. So with that in mind, we wanted to start by asking how you became part of this world and this work.
Nicholas Rodelo: Yeah, so I think like a lot of people in the community, [00:04:00] I have Long COVID myself. Post vaccines rolling out,
I was skeptical of what we were being told was true, that it was gonna be kind of magically over, and then omicron happened. And during that first omicron wave, I caught COVID and had a really bad infection, spent about two weeks in bed, and then I had lasting cognitive issues, mostly recovered, thankfully.
But it kind of permanently changed how I view everything, I think, which is the case for a lot of the community. [00:04:30] And I don’t wanna live in a world where we’re just doing that to people kinda endlessly.
Miles Griffis: Nick, so I met you through your organizing here in Los Angeles where we’re both based,
and specifically, you know, a couple weeks ago through your efforts in getting Long COVID Awareness Day recognized by the city of Los Angeles. Can you tell me a little bit more about how that effort came about?
Nicholas Rodelo: Yeah. You know, it wasn’t a solo effort. I have one friend and close [00:05:00] colleague/comrade, Sarah, who really kind of kicked us off.
You know, she wanted and said she needed a partner for this. So I was more than happy to join in on that. Uh, originally, the way we kind of conceptualized it was like, well the city, the county doesn’t really do much about this as is, so we probably need to have some kind of pressure on them.
And our kind of go-to for that was starting a petition. We’re both in Clean Air Los Angeles. We decided let’s [00:05:30] just start a petition and get all the relevant organizations that we’re aware of, like Solve Me, World Health Network, others, you know, to maybe try to co-sponsor it and then from there, target it at mainly Angelinos.
Maybe if we can have signatures, maybe if we can have organizations sponsoring it or supporting it, we can then go to the city council and they’ll listen to us. Right? And it didn’t work out exactly as we thought it would. So in parallel with the petition, we actually were reaching out also to city [00:06:00] council members and, and seeing if anyone would be interested in co-sponsoring us.
We thought that would go nowhere at all, but we did actually get, in council District 13 in Los Angeles, Hugo Soto-Martinez. His office responded very positively and they were willing to kind of work with us right off the bat. So one thing that we realized we needed to do going into this and that we got advice from another comrade and organizer in the Long COVID space, but also [00:06:30] had a lot of experience kind of around 9/11 health advocacy and
other organizing spaces was that insofar as you can, you should do as much work as possible for elected officials before or during your ask, right? So they came to us and said yeah, we’re willing to work with you, and we offered to supply draft resolution for them. And I think that really helped in this case.
But from there we wrote the resolution for them. And the other ask, the other big ask, I wanna be clear about is we asked for them to light up City Hall. So in Los [00:07:00] Angeles, it is pretty common for days of recognition to light up City Hall. I mean, there have been multiple times in the past that I had, you know, been driving on the freeway with my parents or whatever, and
you know, you see the city hall lit up in pink or, or blue or red or, or whatever it is, and, you know, all the major freeways passed by city hall. So we wanted that for Long COVID Awareness Day, and they did agree to that as well. So, uh, we got both things passed and instituted. And then kind of the end of it was actually going to the city council on February 24th,
[00:07:30] that’s when I met you Miles, and council member Soto-Martinez did thank me and my colleague Sarah and the Long COVID community in general, which again, their office has been great about this. They’ve taken it very seriously. Whereas, you know, a lot of public officials don’t even think about it.
The staff in his office said really great stuff and seemed to know what they were talking about. I remember one of ’em specifically said, this is important not just, you know, for people who already have Long COVID, but for the people who will inevitably get Long COVID in the future.
Betsy Ladyzhets: Yeah, I think [00:08:00] people will appreciate getting kind of the behind the scenes of how it all happened.
And I think that point about helping out the legislators who maybe don’t know so much about this topic is really important to make. And I think honestly just speaks to why, or it speaks to one of the reasons why these kinds of resolutions can have an impact. Because it’s kind of saying like, hey, COVID
is still a giant problem. It needs to be recognized, it needs to be researched, but if nothing else, at least we can [00:08:30] recognize this awareness there. Right?
Nicholas Rodelo: And one thing that I think really helped too was, even being able to point to the petition and showing that there was broad support.
Even though that didn’t necessarily factor into how we reached out to them at that point. It makes ’em feel a lot more comfortable about like, oh, there’s a lot of people that want this. Also, I wanted to give a shout out to Solve ME, they wrote a letter to the city council in support of this and I think that that probably made a serious impact as well.
Betsy Ladyzhets: What do you think was the impact of, or sort of the influence of international Long COVID [00:09:00] awareness day more broadly? We’re wondering if you could maybe talk a little bit about the history of the day or, you know, how this specific action and recognition in Los Angeles kind of connects to what else is going to be happening this month and in the next week or so.
Nicholas Rodelo: It was kind of a way to shame Los Angeles, I guess. Right? It was kind of a way to say, Hey, a bunch of other places are doing this. A bunch of other international cities with huge populations, with huge cultural and political significance in, in their respective countries have recognized this.[00:09:30]
And it’s not just that. Also last year, the state of California recognized Long COVID Awareness day. There were separate efforts there that I can’t really speak to that led to that. But you know that that’s a huge deal. So we were able to kind of look all around the world and all the different cities and municipalities that recognized international Long COVID awareness day.
I think that’s a big part of why this council member’s office realized it was something they wanted to get involved with. The one organizer that really helped advise us on this kind of, on the strategy of [00:10:00] writing resolutions for doing as much of the work as possible. Her name’s Lila. Lila Nordstrom.
She’s great. Hi, Lila. Hope, hope you’re listening. She frames it as letting them get onto a moving train. Like tell ’em that you know, the train’s going this direction, it’s gonna happen. All this work’s going well. You can be part of it or you can ignore it. And I think that’s what we did and I think that’s what kind of the history
of international and COVID Awareness Day, um, and all the other cities around the world that have recognized it allowed us to do it was like, Hey, this is not a new ask. You guys are actually behind the curve here.
I got involved with Clean Air [00:10:30] Los Angeles last year. So personally for me, Long COVID Awareness Day was one of the first actions that I was really involved in. About late February last year is when I joined up with them.
And we ended up doing a lot of the organizing for the first Long COVID Awareness Day event in Los Angeles. So, uh, personally to me it means a great deal because, you know, before I moved back to LA and I found that community, I was in a weird limbo state where I didn’t have a community that really understood [00:11:00] what I had went through and like what my concerns were, like policy and public health wise and everything else.
And you know, it ended up being a small event last year, but it was, I met so many great people. And it served as, as now, the foundation for this, right? The fact that so many places have already recognized it, really paved the way for us to get this done.
Miles Griffis: So Nick, I am sure you’ve run into this as an organizer.
Um, as journalists, we often ask ourselves and the people ask us, um, you know, whether spreading [00:11:30] information and all that is necessary to making change, um, with something like getting Long COVID Awareness Day on the books for LA, I’m sure you may have had naysayers who are saying, why are you fighting for an awareness day over research or mask bans, these other things that are big topics.
Um, yeah, make that case for us. Why is it so important to fight for awareness and why was that sort of a strategy here? Yeah.
Nicholas Rodelo: Yeah. You know, I’m glad you asked this question ’cause I think a lot of people, [00:12:00] kind of equate a symbolic recognition with almost like a bad word. Like it’s a waste of time or it’s worse than a waste of time.
It’s actively taking away from time that could be spent on other things and sometimes. You don’t need a symbolic day for certain things. There’s enough of a foundation already. Um, there’s enough money or interest that in certain cases, maybe that’s not the way to go. With our case, it really feels like we’re starting at the beginning of everything, right?
Symbolism is only a bad or useless thing, in my mind, when you already have plenty [00:12:30] of it, right? Like it’s actually the foundation of movements that you have your symbols recognized. When someone sees the color teal, they think of Long COVID and, and in this case, I think what I wanna get across is that you can say it’s symbolic in the sense that, you know, it’s this recognition day and that they’re lighting up a building.
But also, it’s a recognition day and they’re lighting up a building, right? Like that takes money and manpower and resources. It took the Councilman’s office multiple weeks and, and working with us to get that done. Like it is a [00:13:00] real allocation of resources from the city to do this. And actually having a building lit up in the middle of the second largest city in the United States
for this, I do think that it’s not just symbolic, it is literally material. That building is in the center of the second biggest city in the United States. All these major freeways drive by it, tens of thousands of people, if not more will, will drive by and see it. And even if 5% of them look up, why is city hall lit up teal, right?
That’s a huge amount of recognition in my mind. So [00:13:30] I think it really depends on where you are in movement, like when you need symbolism, when you need material things. And you know, we’ll never say we need symbolism over material things. There is tons of great research that’s been done for years and years and years.
That’s all very, very important. But despite that, and this is not the fault of the researchers, this is the fault I think of the public health apparatus and of our political class, people don’t know about it or have been given ways to kind of disconnect that from their own personal [00:14:00] lives. And I think a lot of the ways we see this is, well, that happens to other people.
It doesn’t happen to me. Oh, I don’t have preexisting conditions that make me vulnerable to Long COVID. Right? Um, but the reality is that in the City of Los Angeles alone, you have 268,000 people approximately that have Long COVID, and that’s just adults. Um, despite all that being true, again,
People have been given different ways to disconnect from that, and I think having a city allocate any [00:14:30] resource, uh, time, money, personnel, and especially lighting up a very important building for the entire city to see. Will help bridge that gap. And I think that’s a very important step. Will it change things on its own?
No. But is it an important step? Yes. And I will say that a big part of our reasoning in getting this done, and a big part of the reasoning in, in the way we worded the resolution for the Councilman’s office was so that in the future when we are pushing on other objectives, right? [00:15:00] Or other advocates at the county or state level are pressing for different things.
They can point back to it and they can say, well, look, look what the city of Los Angeles agreed to. Right? Like, yeah, it’s symbolic, but also they’re agreeing to specific language, right? They’re agreeing that Long COVID has affected this many people. Long COVID affects your life in this way, you know, excludes you from community life, economic life, social interactions, caring for your family, et cetera.
They’ve all agreed to that. So now you can go to other legislators, other public officials and say, look at [00:15:30] what is recognized by the second biggest city in the country. Symbolism is important. And movements that don’t need symbolism probably already have it taken care of, uh, is what I’ll say.
Betsy Ladyzhets: What do you see as some of the potential next steps from this?
Like further actions, further asks that you hope to make?
Nicholas Rodelo: Well, I know there’s a lot of great stuff going on at the county level, that I think more will be coming out about in the next couple weeks. Otherwise, for us specifically, honestly, Sarah and I have been just so wrapped up in getting Long COVID [00:16:00] Awareness Day itself, like the event planned and everything.
I can’t speak for her on this, but personally, you know, I would like to leverage this into speaking to state representatives about different ways that Long COVID can not only be recognized, and again, it’s already been recognized at the state level as an awareness day. But, you know, how can we protect healthcare workers, right?
Um, Long COVID is burning through and has burned through and will continue to burn through nurses, [00:16:30] doctors. There’s heavy turnover rates, much higher disability rates than there ever were before How can we go to schools and like, you know, especially in the city of Los Angeles, right, like, you wanna recognize this day, okay, what are you gonna do about it?
In LA public schools, are you going to work on filtration standards? Are you going to work on making sure sick kids don’t have to come into school? And I think awareness is a big part of that too. I think there’s a lot of different ways to go with this. I feel like a little bit of an opportunist here in that, like, I will [00:17:00] go wherever we can with this.
I think for me personally, I think schools and medical facilities are where spread can be cut down the most. So that’s where I would like to focus next. And where I would like to be able to point to the city of LA’s recognition and say, hey, you need to take this seriously too. You need to protect your workers.
You need to protect your students. And that there’s a lot of things that can look like. And really I think, and again, I think we’re at early stages of this, we [00:17:30] can have a wishlist. We can have like, you know, our perfect outcome. But even small steps, I think are important to building up to those larger objectives.
Yeah,
Miles Griffis: That makes a lot of sense. So last year when you first got to Los Angeles, you had this awareness day. Uh, it was a lie down for Long COVID and now there’s another one coming up. Would you mind sort of talking about that in LA and what else you’re seeing for Long COVID Awareness Day, um, as you’ve been organizing around the country?
Like, how [00:18:00] else are people responding? And, uh, why did you all choose this action for Lie Down for Long? COVID
Nicholas Rodelo: The Lie Down started last year, as you mentioned, um. It was meant to be loosely modeled off the die-ins of AIDS activism and ACT Up specifically. We also realized that for a lot of people in our community suffering from heavy fatigue and POTS or other things.
May not have been the best way to start off by putting them in the middle of police or blocking a city building and getting arrested and all the harms that come with that. So we settled on a [00:18:30] lie-in, and a lot of the language and signage and activism around saying that like, this is killing people.
This is ruining people’s lives. This is making them bed-bound. It struck a good balance between visibility of what it does to people, but also making it so as many people as possible could and would be willing to participate. I do think that we’ll probably get to a level eventually where we want to do more aggressive actions, especially if the government keeps not paying attention.
But for the first one, we wanted to start [00:19:00] a little easier. The location last year was also in front of City Hall. I think last year the symbolism was much more that like, City Hall hasn’t done anything. City Hall hasn’t paid attention to us. So we’re gonna do it right in front of you. Um, this year it’s in front of City Hall
for the opposite reason, that city hall has actually paid attention to us. That the efforts of the community, and again, this would not have happened without everything else happening throughout the city, from mask blocks, from the people organizing the county, from the researchers across the country, and especially those in Los Angeles who’ve been doing their work, [00:19:30] but
it has changed the tone. It’s a little more celebratory this year that, you know, we’re gonna do the lie-in. We want the visibility. We want people to come by and ask like, why are you lying down in a park with masks on? Like, why? Why does your sign say Long COVID kills? But I think the big change this year is that at seven, at 7:00 PM uh, on March 15th, the city hall will be lit up teal.
So the major visibility difference, it’s gonna be a, I think a celebration for a community that is so large and it has such little recognition, right? Uh, by the public. I think [00:20:00] any. Any visibility event, no matter how, how small or however small it starts off is, is, is, is very important. Um, and that, that was really inspiring seeing other places around the world, you know, even if it was 20, 30, 40 people at most
doing that, people ask questions, right? And it also creates a very valuable record that we weren’t just kind of letting it happen. Right? And that’s not just for history to be like, oh, you know, one [00:20:30] day if we have children or grandkids, oh look what I was doing. No, it is like, it is kinda like the same thing with the resolution.
You can point back to what you’ve done and you have a record to prove to public officials, other organizers, whoever it may be, family members who don’t believe you, new friends, partners, whatever it is, and say like, look, this has been happening for years. This has been happening for years and that really does matter.
It’s unfortunate that we need to prove our seriousness to people, but I think that’s true in every organizing space, especially when you’re proving something to the unengaged [00:21:00] public right, or unengaged lawmakers. Um, but it matters. It matters. And, and now we have this permanent, like lighting of city hall that as far as I understand, there’s, there’s no end date on that, right?
So theoretically, a hundred years from now, city Hall should be lit up too. I had to learn a lot about
doing things even if it doesn’t feel like we’re at the size we want to be yet, or if we’re reaching the objectives we want necessarily yet, and [00:21:30] building towards that. And I think that’s, if I can kind of share anything with people listening, it is like, start today and get done what you can and do it in a way hopefully that will make, you know, the bigger goals easier.
But it does matter. And, uh, that comes back to the idea of like, I, I, I really don’t like when people put things down as symbolic, especially in a movement that has such little recognition.
Miles Griffis: Thanks so much for joining us, Nick.
Nicholas Rodelo: Thank you.
Outro
Betsy Ladyzhets: That was our interview with Nick Rodelo from Clean Air Los Angeles [00:22:00] to check out more of their work.
You can follow Clean Air LA on Instagram.
Miles Griffis: So Melanie, what can you tell us about season two?
Melanie Marich: Yeah, we have some exciting guests and topics lined up for this new season, and most importantly, we wanna connect with you, our listeners. Tell us what you wanna hear this season, who you want us to talk to, and how you think we can best cover the ongoing COVID-19 pandemic.
Leave us a review on your favorite podcast app and let us know what you wanna hear from us in [00:22:30] season two. You can also email me at melanie@thesicktimes.org. I’m so excited to hear from you.
Miles Griffis: In the meantime, we’ll continue reporting the information that you need.
Betsy Ladyzhets: Solidarity with everyone still here.
Melanie Marich: Still here is a production of The Sick Times, a nonprofit newsroom, chronically the ongoing Long COVID crisis. This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website. [00:23:00] Our theme song for this episode is The Rude Mechanical Orchestra’s Rendition
of “Which side are you on?” originally by Florence Reese. I’m Melanie Marich and I produce this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover art and Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times co-founders. Thanks for listening.
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