Episode 26: Long COVID and the Vermont Center for Independent Living (VCIL)

In this episode, executive director Jesse Suter talks about Long COVID with Krista Coombs and Kate Larose. Krista and Kate both work at the Vermont Center for Independent Living (VCIL), and both of them have firsthand experience of being, being with, and supporting COVID “Longhaulers”. (‘Longhauler” is a nickname for people with Long COVID). The three of them talk about changes in disability equity and healthcare in Vermont as a result of the COVID pandemic, as well as some of the work VCIL has been doing to support people disabled by COVID.

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A full transcript of this episode appears below.

Jesse: So hello, everyone. My name is Jesse Suter. I am a 50-year-old white bald man with short facial hair wearing a white-blue shirt in front of a blurred background. I’m here with Kate Larose and Krista Coombs to talk about their work focused on pandemic support and advocacy for Vermonters with disabilities. They lead the pandemic equity team at the Vermont Center for Independent Living. Thank you so much for doing this. I’m really excited to get a chance to talk with you.

Kate: Thanks.

Krista: Thank you.

Jesse: So we’ll start with, or I’m going to ask you to please introduce yourselves by telling us who you are, where in Vermont you’re from, and your connection to disability.

Kate: Go ahead, Krista.

Krista: Okay. Hi, I’m Krista Coombs. I am a 51-year-old woman, white skin, long brown hair with some oversized blue glasses. I’m sitting on my bed where I often do work from home. I’m down in Bennington, Vermont. I’ve been living here since 2016. My family moved here from Philadelphia and I also grew up in our south of here in the hill towns of Massachusetts in a really rural town. We have a beautiful property here with chickens and dogs and cats and a big garden and fruit trees. I used to have an acupuncture practice since 2002, and then I needed to pivot as I became sick from COVID in twenty-twenty, and I’ve never really recovered. I became disabled and I’m not able to do the things that I once was able to.

I have a family history of long illnesses from infections from once I was a child to now, and actually my grandmother died of bulbar polio when my mother was 7 and she was 27. I’ve always actually been concerned about viruses, and for some reason I was really taken off guard with COVID and I wasn’t really paying attention even though many of my friends were sick here in early February through early March 2020 as were we. I started shifting my focus to understand what was happening to myself and my family, and I started to study more seriously what people had been doing in the past to help with other infectious triggered illnesses with similar symptoms and conditions such as the ones we were experiencing.

 Since we didn’t have a positive COVID test as I was sick before any of this was possible, that also made everything a lot more difficult, and I began to understand more and more about invisible illness and how under-recognized it is and how debilitating it could be. It took until the fall of 2020 for me to actually hear the word long COVID and immediately it was like a piece of the puzzle suddenly fit. Ed Yong had written an article in The Atlantic and that was the first I heard about it. I really didn’t want anyone else to be sick like we were or be alone going through it. I started talking to Kate at VCIL and I learned about the pandemic equity team and that there was a place for me there. My position at VCIL is long COVID advocate and I work part-time, flexible hours from home, and I started in March of 2023.

In terms of my connection to disability, I’m newly disabled with chronic illness and I have many new diagnoses, especially this past year of 2023, such as something called myalgic encephalomyelitis, often called chronic fatigue syndrome, and also a newly identified immune deficiency that requires me to have home healthcare with weekly infusions at home. I’ve been mostly housebound and bedbound and I manage a lot of my symptoms that often fluctuate in severity. So far, the first two years were really the worst and I have stabilized a lot. I have a lot of difficulty with memory and organization, and a lot of my senses have all been scrambled, so I’ve been finding ways to accommodate my new disabilities.

Jesse: Well, Krista, thank you so much for sharing all of that and welcome. Kate?

Kate: Yeah, hi. Thanks so much, Jesse. My name is Kate Larose, she/her pronouns. I am middle-aged white woman with long brown hair, blue glasses, and today I’m wearing a blue dress with a silver necklace with pearls. So I became disabled about six years ago now. I experienced a traumatic brain injury. And at the time, I was working for a community action program working to support primarily folks who were living in poverty and people who had disabilities. And I thought I knew a lot about the realm of disability and systemic ableism at the time, given the work that I had done. And it wasn’t until I became disabled and really experienced firsthand what it’s like to be systemically excluded from things like the workforce, education, civic participation, health care, et cetera, et cetera, that I really started to get it and unravel my own internal ableism.

Shortly thereafter, the pandemic began and my child and my husband are both immune-compromised and we tried really hard to make sure that we could do all the mitigations we could to protect ourselves. And unfortunately last year in April, once healthcare dropped masking, individual actions were no longer enough. My husband became completely disabled with long COVID in August, he spends almost 24 hours a day in bed. He hasn’t been able to work. I am now a caregiver for someone who used to be my caregiver, and we are continuing to navigate this both for ourselves and in the context of VCIL using our lived experience to make it easier for other folks too.

Jesse: Thank you, Kate. And we’re going to talk about some of your work with the pandemic equity team, but I just want to say I really appreciate that you both have the lived experience. As you said, Kate, you have an understanding of this at a much deeper level and a much different level than most. So we’ll talk about that. I do want to take a step back because you both work at the Vermont Center for Independent Living, which we’re also shortening to say VCIL. Can you tell us a little bit about the organization and what VCIL’s connection is to long COVID?

Kate: Yeah, thank you for that question. So at VCIL, we are people with disabilities working together for dignity, independence, and civil rights. So as one of over 400 centers for independent living across the country, we have in our bones as a center for independent living and as part of our history, this is what we do. I want to talk a little bit more when we get into it later on, the history, the intersectionality of post-viral illness as a foundational core of the work that we do and as a foundational core of disability rights today as we know it. But this is what we do around the state. We are a center for independent living with the pandemic equity team in particular, we continue to assess and respond to the current and ongoing pandemic related issues Vermonters with disabilities are experiencing, that includes COVID long haulers, and that includes developing resources and community, supporting people and advocating for equal access to education, healthcare, and civic life.

Krista: This is Krista. I just wanted to add, for me, coming to VCIL, the model of independent living and peer support has been something that I wasn’t really aware of before, the power of peers and the power that everyone is unique with individual needs and what I was doing on my own was trying to identify what those were, and it’s so much easier to identify it with other people sometimes and get advice from people who also know some things that are similar in their lives. So peer support for me has really changed how I view things and it’s just a really powerful way of being together and sharing resources.

Jesse: Great. Thank you both for sharing that. And Kate, I appreciate that you’re, I think, foreshadowing something that you’re going to bring up later in the conversation, the historical connections. So we’ve used the term long COVID a few times and how it affects Vermonters. So let’s start with what’s a good definition of long COVID, and you’ve both already shared a little bit about your experiences. You might want to share a little bit more if you’d like or maybe just start us off with a definition.

Krista: Sure, I’ll take that. So the definition is complicated and it’s not really completely agreed upon. So I’m just saying that outright right now, The National Academies of Science has a working group that has been coming out with a definition probably in June and July of this year. And that has patients, researchers, all sorts of stakeholders involved in trying to figure out what the definition is. So to start with long COVID, it also has other names like post-acute sequelae to COVID-19, post-COVID conditions. Long COVID is a patient term. It was started in 2020 actually on Twitter and there’s been papers about it. So for me, I call it long COVID. And for these purposes, I probably will continue to call it long COVID throughout.

So I’m going to use the WHO definition just because they start with symptoms that last more than two months that start within three months from onset. This is where it can get tricky. Some people will have symptoms that continue once they get the infection and just continue out. Other people will seem to recover and then three months later, all of a sudden they’ll have a huge decline. So there’s a lot of different ways this manifest what makes it very complicated.

Signs and symptoms associated with long COVID vary wildly and they can last for weeks, they can last for months, or they can last for years like in my case. And some individuals, signs and symptoms may resolve over time without treatment. Common signs and symptoms include being really tired and fatigued that interfere with daily life, signs and symptoms that get worse after physical or mental effort, which is called post-exertional malaise or post-exertional symptom exacerbation. It’s another thing that’s really difficult to understand as well going through it. The more you do say on a screen like now, then sometimes you’ll have repercussions after you’ll have an increase in symptoms. It could be like you’ve all of a sudden feel like you have the flu or it could be symptoms that you already have that just get worse as well.

Symptoms that, like respiratory symptoms is what we all thought this was early on. Some people still have not gotten their sense of smell or taste back years later. Cardiac symptoms, a lot of neurological symptoms, which I was talking some about what I have. Digestive symptoms are very common. I would say especially with Omicron variant. Joint or muscle pain, rashes, change in menstrual cycles is also a really big one. So the severity and the presentation all range widely, which make it very difficult to diagnose. One of the things that also happens is conditions that you might have had before you had COVID can worsen, which makes it also really difficult to say this is from COVID or not from COVID, but I would say usually peers and patients that I’ve talked to can say that they haven’t been the same since their last infection.

But then again, to add another part to this, not everyone has an infection that they recognize because it might’ve been mild or even asymptomatic. So even from the start, you might not even know you had COVID. And then again, as I was saying, I had COVID really early on before testing was available and we’ve gone back to that since we’re not collecting data anymore on COVID infections. So it’s just going to be very hard to tease all this apart moving forward as well, whether you even had a COVID infection or not, when you try to get a diagnosis from a doctor.

Jesse: This is Jesse. So thank you, Kate, for sharing that. And I hear both the uncertainty and the unknown. It’s great to hear that maybe there will be some more clear definitions coming, but it also sounds like an impossible task given how variable it is. And certainly at the center and through my work there, I’ve had a chance to talk with people with invisible disabilities and sometimes it’s long COVID and sometimes it’s other forms of that. And I’ll also know there’s a lot of frustration that comes just to put a mild point on it with the unknowing, but also how you’re treated.

Kate: Well, so I guess one thing that feels really important to name for me is that as a center for independent living, we reject the medical model of disability. We believe that individuals with disabilities have the right to live with appropriate support in their homes, fully participate in their communities, and to control and make decisions about their lives. Because we know that with increased independent living comes increased well-being. That’s with any disability. But right now with the current federal response to long COVID, it’s only focusing on and only funding the medical model of disability. So if you look at HHS and what they’re focused on or what Senate is focused on right now, they’re really focused on this ideal journey that they’ve actually mapped out, which is sort of this ping pong ball of the disabled person goes to the doctor, the doctor refers them to this doctor, they give them some supplements and treatment and maybe they’ll feel a little bit better, they’ll still have a degree of disability, and that’s the end. It’s not about individually defined wellbeing.

And this is a problem, because we believe strongly that the tragedy here is the medical, cultural and systemic ableism that’s at play. Disability is not the tragedy, it’s the medical, cultural and systemic ableism. And so, all the while we’re in the midst of this mass disabling event, this is something that advocates have been asking for and those who are supposed to be helping us, including the federal response, they’re not hearing us. So right now we’re about to have maybe $10 billion put into research for long COVID over the next 10 years. Do we have access in the meantime for people to get support for SSDI or cost of living, universal basic income, being able to keep their homes, being able to keep their jobs? We don’t have that. What we have is money going to researchers only solely focused on that and the medical ableism, systemic ableism, healthcare ableism, it’s not being addressed at all. It’s being perpetuated.

Jesse: So you’re sharing a lot in there. And so, to unpack some of it, so it sounds like you’re saying some of what’s difficult about long COVID in terms of the experiences of people with disabilities is not just the symptoms which can be varied, which can be intense, which can be debilitating, but it’s also the experiences with how you’re treated and maybe how you’re believed. And also, I mean you emphasize self-determination, which is of course appropriate for the center for independent living, and that’s I believe what you’re categorizing under ableism.

Kate: Yeah. So what is happening right now with an ongoing mass disabling event? This is not unique to any part of the disability rights movement or any part of history. What’s unique is that it’s happening on such a large scale all at once. We have people experiencing being denied access to healthcare, being denied access to education, being denied access to the workforce, and being denied access to civic engagement. We even have people over and over again asking for ADA accommodations requests to vote in their local elections here in Vermont. And for two years now, they’ve been continually denied.

So right now, many people don’t even have the ability to vote. Fundamental right, not even the access to vote. With all of this happening on such a large scale very quickly, it’s becoming more, our hope is that there’s going to be more of a broader movement of people working to claim their rights together in solidarity as part of the larger, broader disability movement. Because you’re right, this isn’t unique to people who suddenly become disabled and begin like I did, and experiencing, “Oh, this is really what it’s like, huh? Okay, there’s a little bit more to this than even I thought there was to it.” But the fact that it’s happening to so many people all at once is the game changer. Before the pandemic, it was one in five Vermonters who had a disability, and now it’s one in four. And we’re only four years in.

Jesse: Well, and as somebody who works at a university center where we’re often asked, can we provide useful data about disability in Vermont? And first question is, who has a disability in Vermont? And it’s incredibly complicated and people have completely different definitions. So as you’re discussing, medical definitions are different from other definitions that we have and certainly how widespread people are impacted. Do want to address a big question, and Kate, you shared this one with me, but I think you’re right, this is exactly the one that people are going to ask, maybe people who are listening to this right now. A lot of people say the pandemic is over and many policy makers talk about it in the past tense. In fact, I don’t think I’ve heard anyone recently talk about in the present tense. So what do you make of that?

Kate: Yeah, that is such a great question. Thank you for bringing that up. So here’s the thing about pandemic inequities. When the pandemic first began and we look at who was most impacted, initially it was everyone. We didn’t have vaccines yet. Everyone was staying home. And when everyone is impacted, when the most privileged and policy makers are impacted or they think that they’re impacted, change happens quickly, very quickly. When it becomes an issue of only the vulnerable are being impacted, then we start framing things in the lens of, oh, that’s over because it doesn’t impact me anymore, the one in power, the one making policy. So it’s over. That’s a problem.

Right now, in the last few months, prevalence of COVID, which causes long COVID is actually much higher than it was for the duration of what people in Vermont consider for the pandemic years.

And I want to repeat that; Prevalence over the last few months is higher now than it was when people talk about the pandemic as being an active thing.

What we’re experiencing right now is the people who are dying, the people who are having the most post-acute sequelae tend to be folks who are in congregate care settings, people in assisted living facilities, skilled nursing facilities.

This was the third year I believe, of vaccines in September when the new vaccine came available, all of a sudden it wasn’t available. So if you were really privileged and you could track down where to go get the vaccine, you could take time off work, you can take your kid out of school, you could go get that, you had a car, no problem, you’re all set. But if you were in a skilled nursing facility or if you were home and didn’t have access to transportation, you did not have access in a lot of cases to a vaccine. There are people in skilled nursing facilities last month that for the first time got a flu vaccine, an RSV vaccine, and a COVID vaccine just last month. And the reason we know that is because that was through VCIL’s vaccination program. So we have people who are being provided care through the state that even though vaccines are available that save lives, they weren’t being given access to that.

So the pandemic is not over. What we’re experiencing actually is the pandemic inequities for the most vulnerable, for people who are disabled, for people who are rural, for people who are poor, for people who are Black, indigenous, people of color, is that those inequities are just beginning. This is just the start. And so, what’s about to happen, and we’re already starting to experience it, is people who, we probably had more people in the last wave in January that are going to start to realize that they’re longhaulers. In the next few months, people are going to start losing their homes. People are going to start losing their access to healthcare. People are going to start losing their access to education and work. And so, there’s no more supports. Supports are gone. You’re not going to get paid sick leave time, you’re not going to get anything like that. And people are just being left in the dust and that’s going to continue to get worse and worse.

(And the problem here, and then I’ll wrap this up because I know I’m going long on this, I’m very passionate.)

The problem here is that our systems were already very strained. We already had a strained healthcare system. We already didn’t have enough care attendance. We already didn’t have enough of social services to go around and social benefits. We already didn’t have enough paraeducators in school. And now, everyone who already had a disability to begin with and the newly disabled, there’s going to be even less resources. We’re already seeing school budgets failing again and again and again. And if you want to experience how quickly a school budget can go up, add another 20% of the population to the school population who needs additional needs. This is not a sustainable system that we’ve created. So what’s going to happen and what we’re already seeing happen is the pandemic equities are going to increasingly get worse because the people that are going to keep getting what they need are the privileged and the people that are going to keep getting things taken back from them are the people who are disabled.

Jesse: Krista, did you want to add to that?

Krista: Yeah, I wanted to go back to initially what you said, how you’re not hearing anyone talking about the pandemic being current. So I wanted to say actually Senator Sanders is. So in January of 2024, he is the chairman of the health committee, which is the health education labor and pensions committee. He held a long COVID hearing. It was not covered really at all in Vermont. So maybe a lot of people don’t know about it. And he really made it clear that reinfections can often be cumulative and make things worse. So people who have long COVID and get reinfected, often it worsens conditions. Anytime anyone gets a COVID infection, it can lead to long COVID. The thing that we want to do is stop transmission of COVID and that will stop long COVID.

Krista: So there are people talking about it. There’s a lot of researchers who are now coming out talking about the pandemic not being over. There’s a lot of actually pediatric researchers in particular from the NIH coming out and saying, “Hey, wait a minute, a lot of children have long COVID that initially at the beginning of the pandemic, we didn’t really think children were affected by COVID that much. And as each variant hit, it seems more and more children are also having long COVID.” And they have their numbers at around 5.8 million right now in the United States, children have long COVID.

Krista: So there is still people out there saying the pandemic is actively happening. We decided we don’t want to count COVID, we don’t want to say the word COVID, and we certainly don’t want to talk about the long tales of COVID. That could just be a chronic problem for the rest of your life. And there’s really no reason for it that I can see. So I hope even this podcast will get more people to realize we are talking about it in some spaces and you can just really find tons of information about it online. It’s really everywhere. There’s lots of research and lots of people writing about it weekly and daily.

Jesse: That’s why we’re interviewing you guys. We want to help share the news. And my point earlier was that personally I’m not hearing people still talk about the pandemic as current. Of course, you and many advocates are. So thank you. Okay, so you shared your team started in 2022. So what was your initial charge and how has that work shifted from then to now?

Kate: So initially, the focus really was on systems level advocacy because 2022 was about the demarcation line of where we started shifting. So that was when things were starting to be declared over. Within the disability rights space, we were realizing that things were not over. And so, systemic level advocacy and individual level advocacy was going to be all the more important. So that included things like making sure that people understood how existing federal and state civil rights protections cover people. So things like the Americans with Disabilities Act, section 504, what that looks like in employment, what that looks like in access to education, what that looks like in access to healthcare and access to civic engagement like voting. So a lot of our focus initially was on that, and we were able to bring Krista in, which we were so excited about to be a peer advocate, play a peer advocate role for longhaulers and also do more systems level advocacy as well.

Kate: And then, things started shifting rather rapidly. And what we found as we started connecting with folks about these systems level issues is that people were being left in the lurch by our public health agencies, by federal agencies, by skilled nursing facilities. And so, we started having to shift really quickly to do things like provide tests. Medicaid decided they were going to stop funding paying for tests, so people had no access to tests whatsoever. And our state government decided that they have access to be able to order through the national stockpile free tests that have been paid for through our federal tax dollars, but they decided they weren’t going to do that any longer. So things, places like schools were calling us and asking for tests. They’re begging us for tests. Places like skilled nursing facilities were calling us in active outbreak, begging for tests because they didn’t have PCR tests and they didn’t even have access to rapid antigen tests.

Kate: Ambulance companies were calling us and begging us for this. So we started shifting to that. Since December, we have distributed, I want to say something like 500,000 tests. Without testing, you don’t get access to treatment. That’s a problem. People weren’t getting access to Paxlovid, but you also have to be able to get access to Paxlovid very quickly before most people know that you have an active infection.

Kate: So we started spending a lot of time doing outreach on that. We also realized that people were not getting access to high quality respirators. The places that had stocked them had stopped stocking them. Again, our state public health agency had access to these free of charge, but they decided to stop stocking them. So we got a truckload of N95s trucked to us from California, and we distributed them around the state. So things have really shifted as it’s been deemed over and all of the protections have been pulled back from us. We really have been taking a much more active approach to making sure that people get their day-to-day direct needs met.

Krista: In terms of the long COVID side of things, I just wanted to say that we have long haulers throughout the state who have gotten long COVID from all different variants. It’s not just one variant or early on in the pandemic that people experience long COVID. And for me, peer support has been a really big piece of what I wanted to do and what I feel like is starting to really be really something special that we all need here. So I hold a weekly peer support group for long haulers as well as people with associated conditions to long COVID, which means conditions that are often seen with long COVID, which you can also see in other conditions such as chronic Lyme or other tick-borne illnesses, or as I said before, ME/CFS or myalgic encephalomyelitis. So we welcome all folks like that who have overlapping and similar infectious triggered illnesses.

Krista: I’ve done a lot of outreach with UVM Medical Center in particular. There’s a couple of doctors there who run a support group and they’re trying to get out more resources. I have been talked a lot with the Department of Health. I’ve been trying to talk to Dartmouth more. And for me, it’s been creating and maintaining resources in general and trying to participate in more patient-centered committees and having people recognize how important it is to look at holistic patient-centered care and how lived experience is really where they need to be getting that information from.

Kate: I think people, policymakers, medical providers, think that there’s a path forward right now, which there’s not. So people are like, “Okay, you get this diagnosis and then you go to the specialist and then the specialist give you these things and then you’re good. And if you’re not good, then you just tell LSDI or you tell your private disability insurance company or you tell your retirement and then you get these things and then you also have Medicaid and everything is good.”

Kate: And this is so different because it’s novel and because it’s so broad-based that people hear long COVVID, they might think, “Oh, I had long COVID, I had a stuffy nose for three months.” And so, I think people aren’t fully understanding how much there’s zero social support here, even less than with existing disabilities, which is really quite, it’s very curious to me. And even if you can find somewhere to go, you can get a diagnosis and then you can find somewhere to go. You can go there. Insurance isn’t going to pay for it, they’re not taking new patients if they are, and you’re going to have to travel across the country to get there, they’re not going to be able to, there’s no cure. There’s not even any recognized treatment and you’re still not going to be able to get any of your social safety nets.

Jesse: Right. Well, and to your earlier point, there’s not even recognized definitions or presentations of it because it’s so variable.

Krista: I also think that I wasn’t sure how much the disability community has not really gotten behind long COVID at all. And that’s been a huge surprise for me being newly disabled, thinking that there was more resources available or there would be more of a drive to help find more resources or there’d be more solidarity. And it’s been really bleak. As Kate said, there’s 403 centers for independent living, and we’re the only one who’s really taking on long COVID. We’ve been trying to reach across and trying to have meetings and it’s just not happening. And even with, they have the Office of Long COVID Research and Practice, but none of the federal agencies seem to be understanding long COVID or think it’s to then trickle down into states so that states understand it to then welcome long haulers. That’s just still not happening at all.

Jesse: Well, I mean it’s so interesting to hear you both talk about the surprises around attitudes and so not just awareness, but attitudes related to COVID and long COVID. And I’m hearing a lot of similarities as you’re talking about general public attitudes, healthcare community and also the disability community. So even across your national network of centers for independent living, and I hear your surprise with that. Do you feel like it’s similar? We’ve just, as you said, we have maybe a playbook or we have an understanding that’s been changed over time about general attitudes related to COVID and long COVID? Or do you feel like it’s different awareness or attitudes within the disability community? Is it a difference between developmental disabilities versus acquired disabilities? Is it sometimes those are distinctions that are made within the community?

Kate: I think it’s a scarcity mindset. So everybody is struggling to survive as it is, and we are witnessing just the decimation of these systems, that people are… we are needing these systems, our life depends on it, and there’s already scarcity. What I find interesting is, so we’re in 2024 now. In October of 2022, the Disability and Health Journal published a piece entitled Ever-changing but always constant: Waves of disability discrimination during the COVID-19 pandemic in the US. And here’s interesting to me. So the first wave, the first three waves, and we’re all in on this together, first wave of discrimination was healthcare rationing. Not good, we can all agree on that in the disability community. Healthcare rationing is bad, it’s eugenics. Second wave is lack of equitable access to resources, supplies, and accommodations. Not good, we can agree on that. Third wave, disability discrimination came in the form of lack of vaccine access. Again, we can all agree on that.

Kate: Fourth wave is what’s happening now. We are going to continue to fill ripple effects for this fourth wave for a long, long time. And that is the newfound COVID long haulers are finding themselves very abruptly and suddenly navigating day-to-day realities of living with a disability that includes interpersonal, medical, and systemic ableism and disability discrimination. And yet, they’re not being provided a full and equal place in the broader disability community table. It is almost as if while long haulers are being pushed out of every other public space, they’re also being pushed out of the disability community too.

Jesse: And when you say pushed out of the community, so there was agreement around the earlier phases that you’re talking about in terms of equity. Was there also inclusion in the, I mean there’s no, of course, single disability community, there’s-

Kate: No stratified community here, yeah.

Jesse: Right. But do you feel like to the extent that we’re talking about this generally, that there was inclusion and belonging for people who had acquired COVID and were experiencing longer effects long COVID? Yes. I struggle to answer the question, you’ve already answered it.

Kate: Perhaps not explicitly, but things like by virtue of everything was virtual, so long haulers could be part of, and people of other disabilities, like people with brain injuries, myself, we could have been part of the policy level discussions. We could have been part of the conferences. I can’t attend any conference now in my profession because they’re all in person with my brain injury. I can’t even go into my office. A lot of people in the disability community can’t be part of any of the activism that’s taking place. They can’t be part of staff picnics. The table has been taken away from us because it was there, it was virtual, hybrid access was available. If it was in person, there was this level of agreement that we want to protect one another. And now, that’s not there. But the reaction to it of even asking for those accommodations within the disability community, it’s a visceral reaction that you wouldn’t get if you were asking for other accommodations.

Krista: I just wanted to add, I’m new to this conversation, so I listen a lot more because I don’t really have a huge understanding of history, but what I’ve noticed is the workplace, there just aren’t enough workers and so many people are out sick. So each wave that happens, it’s just this continual lack of continuity in work. And so, you try to reach out to someone, “Sorry, two people are out.” You get a message, the person will be out for a month, they’ll be back next month. So there’s also, the scarcity is also there’s just not enough workforce or the workforce is to say. And a lot of the talks that I’ve given, people recognize that what they’ve been experiencing actually is long COVID and they just didn’t know anything about it. That’s still happening. And it often is just simple things. They haven’t felt the same.

Krista: And like, “I knew I hadn’t felt the same since I had that infection, but no one’s told me that it could be this or no one’s believed me.” I mean, these stories are very long of all the people trying to get to a specialty and being denied. Even though they have horrific new types of headaches, they won’t be able to go to a neurologist. I mean, it’s this constant decision making of who should be able to go to a specialist and who shouldn’t. But I think the workforce itself is a real problem that we’re not talking about. There’s just not enough staff.

Kate: And the framing that’s being given, which I always just chuckle when I hear it, is that people will say, “Well, it’s back to normal.” It’s like, “Oh, I don’t think you… Do you remember what normal was? Because this isn’t it. This is all another level of something that we’re being sold is okay that is not okay.”

Krista: And normal wasn’t great either. So I don’t know. I guess for me, 2020 Black Lives Matter all around that time, you really saw people coming together in ways that I thought were going to maybe stick. And then, this idea that we can’t do this anymore when you already have done it doesn’t make sense to me. You used to wear a mask and you see me wearing a mask, so I know you can wear a mask. There’s all these conversations about, well, I don’t have to do that anymore. I don’t have to do that anymore. And just missing who’s in front of you and what they’re simply asking you to do with something that you actually used to do. There’s something else there that’s blocking that.

Jesse: So I appreciate that you’re both are giving the breadth of the challenges. And again, just want to reinforce some of the points that prevalence is up. I think that’s a pretty compelling point to make as people are saying whether or not they believe the pandemic is continuing or not. And then also, just the scale of it. So the effects are not just health symptoms, but related to housing and employment, and voting, critical this year.

Jesse: So I want us in the little bit of time that we have left to start to look at what’s next and if there are other things that you think the system should be doing related to that. I think we’ve talked a lot about the challenges. You’ve talked about some of the strategies that you think are helpful and I think would like to see continue in terms of peer supports as well as practical prevention and response strategies. But I want to go to the future next, which would be what do you think the biggest challenges for Vermont will be regarding long COVID over the next five years? So you’ve talked about how you started and how you needed to pivot and the different supports that you’re providing all of the challenges. What about the next five years? What do you think some of the biggest challenges that maybe people aren’t talking about or even thinking about yet?

Kate: Yeah, thank you. So the thing that concerns me the most is that even for people who believe the COVID pandemic to be over, we have collectively as a society written this new playbook that has pulled apart and rolled back by decades, the rights that were hard-earned for people with disabilities. And so, what I mean by that is when we have the next pandemic, which will be soon, this is just how pandemics work, we have already collectively decided that it is okay for people to infect others in a school setting or a healthcare setting. So if you look at what’s happening right now in Florida with measles, kids with measles can go to school, that’s fine. Well, that’s not fine. Public health did not say that was fine until the COVID pandemic began and people got weary and got COVID fatigue. We just had our first known case of measles in a very long time in Vermont. What’s going to happen?

Kate: We hear from people all the time, people who are in active cancer treatment, people who have babies in the NICU at hospitals here whose babies have already died once and they’ve coded and now they’re very vulnerable and they’re in a NICU. These are places where they used to take very simple precautions like wearing masks to protect people, cancer patients, babies. That is not happening anymore. This is a you-do-you society, and it’s really concerning because let’s just pretend that COVID is gone. It’s going to be a problem for the next pandemic, it’s a problem for measles, it’s a problem for TB, it’s a problem for RSV. We are rolling back collectively all of the hard-earned gains that ADA and 504 have created. And it’s really concerning for me. And so, I think unless we come together in solidarity as disability rights advocates, as people who care about other people, I think we’re going to go really far back and lose everything that we’ve gained to date in both public health and in disability rights.

Krista: I guess also it seems like we question who is worthy now and we’ve decided who’s worthy. So I guess that’s a fear of mine, of how do we, people who are the most vulnerable, why is it okay that they’re not okay? I think I would rather live in a world where we care for everyone, and that’s not what I’m seeing at all. For me, I really worry about children and a lot of my advocacy is around pregnancy and pediatrics. I’m in the NIH RECOVER initiative, which is studying the long-term effects of COVID-19. And I think that we don’t understand a lot about our immune systems. There’s a lot we need to learn and about and how when we age, what happens, what happens during puberty and menopause? All those things affect the neurological system and immune system. I don’t know. We’re made and built to have so many infections hit us over and over again, close together, the same infections, and that’s what seems to be happening.

Krista: It’s not just COVID. We’re also getting other infections easier. A lot of people are. Our immune system seems to be really hit hard by COVID in particular. I worry about our brain health as we look at post-polio. We look at the 1918 flu. There was a lot of neurodegenerative disease that happened later on that came, and that’s another worry of mine. In terms of systems level, we need to build systems that are flexible and that’s not what we have. We need better leadership, leaders who are willing to represent everyone, look at social determinants of health, and actually start really working on what that means and make healthcare more accessible and safe.

Jesse: Thank you. And Krista, I agree, it is a big question and somewhat unfair, but I really appreciate both of your perspectives on it. And Kate, one of the things you shared was surprising to me, which is that the experiences of COVID-19 and the lessons learned might be backpedaling in terms of things like universal precautions rather than greater readiness for the next pandemic. So I mean, you shared specifically, I mean, so when I hear that the hospitals are not requiring masking anymore, it didn’t occur to me that they’re talking about less masking than pre-pandemic. And that’s what I’m hearing you say.

Kate: Yeah, I think the first year of the pandemic, a lot of public health journals were all on board using the E word, saying this is eugenics. When we look at our current response, this is what eugenics looks like. And then, that shifted. And I think what really is quite salient to me is when you experience going back in history and reading how things were at that time, what’s clear to me is that people who were part of the eugenics movement implicitly or explicitly, they didn’t know they were part of eugenics. And I think that’s what’s happening right now. When you have healthcare providers that are working with highly vulnerable people and they’re saying, “I don’t have to protect you. I don’t care. I don’t have to protect you. Nosocomial infections, us infecting you, you’re going to get it anyway. So if you get it from me, it doesn’t matter.”

That is eugenics. And I just think people don’t really understand that the rolling back of a public health emergency doesn’t mean that a pandemic is over.

It doesn’t mean that we have to stop caring about one another.

It doesn’t mean that federal civil rights don’t exist.

It just means that the burden of harm really clearly and passively has been shifted to those who are most vulnerable. And we’ve created this cultural phenomenon where most people are saying, “That’s okay.” It started really quickly where people were like, “Oh no, look at what’s happening in the congregate care facilities in Seattle. We need to put a stop to this.” And then, once people themselves didn’t view themselves as vulnerable anymore, it was okay that people in assisted living facilities were dying. It was okay that people with intellectual and developmental disabilities were dying because it wasn’t them. And so, we’ve come full circle here and it’s really quite scary to me where we are and what this is suggesting for next steps.

Krista: I just want to add something quickly. For me to not learning through history is a big piece of this now, and just people not being able to say, talk about COVID, not talk about all the people who have died, all the orphans that have happened. I’m finding the narrative being rewritten in real time that we overreacted. We shouldn’t have done all these things. The reason why children aren’t in school is because of lockdown and all these different sayings of rewriting. And I think we also have to just look at the grief of what the pandemic caused and the fear. And people who have lost loved ones are also left without support, without a place to grieve. And I just don’t think we can move forward until that happens or even recognize long COVID until we start looking at what the pandemic has done to all of us and be more supportive and compassionate.

Jesse: I want to talk with both of you so much longer about both of those. Just to get it on record, I think, I mean, when you bring up eugenics, our University of Vermont had a role, had a big role in that historically. Currently, one of the newest initiatives at the university is planetary health. And so, folks at our center are trying to learn more about the directions that the university is interested in taking that and what is the perspective and inclusion of people with disabilities in that conversation and that initiative planning. Do you have another couple minutes? Because I feel like our last question is a really important one to end on. Given those widespread challenges, given the concerns of where we’ve been, where we are, and certainly where we’re going, and what it’s going to take to respond to some of those challenges, what’s some advice the two of you would have four Vermonters with long COVID and their families who are looking for help?

Krista: I’m going to start with this one. Is that okay? Okay. Well, for me, people realizing that saying the word COVID is really triggering for most people. And just realizing that when you go into have a conversation maybe about long COVID, just the word COVID can sometimes just create a response that has nothing to do with you. It’s just how it seems like a lot of people have been wired during the pandemic. And it’s okay if you don’t have proof that because we’re not counting COVID at all, and it’s not your fault. I think we need to put the blame where it’s due. And that’s on COVID itself, the virus, and the failure in leadership.

Krista: There’s lots of tips out there to help people understand how to maybe navigate doctor’s appointments and medical professionals, how to talk to your family about your basic needs and what you might need that they all of a sudden don’t understand the switch that happened. And I really want to say a lot about patient advocacy support groups as well. There’s lots of them. There’s lots of support groups out there, and there’s people who have had chronic illness before who have been so helpful for long haulers and understanding ways to take care of yourself, ways to pace yourself, different techniques. So reaching out to support groups I think is one of the first really great places to get more information.

Jesse: And Kate, I’m sure you’ve got a response too. But Krista, so if people are interested in finding out about the tips that you mentioned, but also connecting with support groups, what would be a next step for them if they’re interested? Would it be to go to VCIL, go to your website?

Krista: You can always reach out to me at krista@vci.orgl. There’s also the CDC, the WHO, all the NIH. You could do a simple Google search and you’ll find information that way. I also created a resource page that I can help people with what they want to learn about because it also can be really overwhelming because there are actually so much information out there.

Jesse: Kate?

Kate: Yeah. I would say what you’re experiencing is very sudden for many people, and it can be really challenging, especially at the start, but you’re not alone. There’s beloved community. We have elders in this movement who have fought and secured rights for all of us. And what I find so interesting about this is that a lot of the people who helped secure these protections were people who they themselves were post-viral illness survivors. So a lot of the leaders, Judy Heumann, mother of the Disability Rights Movement, Ed Roberts, father of the independent living movement, Paul Longmore, Sue Williams, Johnnie Lacy, they themselves have been through this and they secured rights for all of us. We want to tell you about your rights. We want to help you advocate for your rights. And more than anything else, a lot of the things that you’re experiencing, a lot of the grief, it’s because of the systemic ableism and challenges and the exclusion. There is disabled joy on the other side, and we are here in community to help one another be able to find and have that disabled joy together.

Jesse: Well, thank you for that. And thank you for everything that both of you are doing to build community and build supports and connections for folks that need it. We do need to wrap up. We’re over time. So I’m so grateful that both of you join me today and you’re willing to share your personal perspectives and certainly everything that you’ve learned about your work and the work that you’ve done. So as the director of the Center on Disability and Community Inclusion, I thank you. I learned a lot as a father of two young boys with heart conditions, who is terrified of viral infections in general, and COVID and long COVID specifically, I’m grateful for your work and appreciative there. So it’s hard to have a short conversation like this about long COVID. So again, I do want to follow up with both of you after this to see how we can connect more and we will put links and resources connected to this however we can do that. So thank you both so much.

Krista: Thank you so much.

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