Breathing for Justice: Exploring the Intersections of Long COVID and Disability Justice

April 23, 2025

Transcript

Part 1

06:05 - 37:05

>> Sarah

Good morning, everyone. Thank you for your patience and grace  as we work out some tech. We are so thrilled to welcome you to this two part webinar, Breathing for Justice. This has been a work in progress, but we are so excited about the lineup we have and the conversations we'll be having today. We'll be talking about breath, disability, chronic illness, Long COVID, health care, education, and so much more.

My name is Sarah and I am a Korean American person with shoulder length black hair that is curled. I have on pink glasses and a light blue and white striped shirt. I also have shoulder length black hair that is curled. I will be a moderator for the second panel in the afternoon, and working with Bri Noonan as an access doula.

Before we get started, we have a couple of access notes and general housekeeping notes to orient us all. First of all, we thank Illinois Humanities and the American Association of People with Disabilities for sponsoring this event. Thank you to UIC’s Dr. Jennie Brier and team at Listening for the Long Haul and Strategies for High Impact, and Long COVID Justice.

We also want to give a shout out to Pro Bono ASL for providing ASL translation services today.

Most of us today on the panels are spoonies, chronically ill and disabled and working on crip time. Some of us need more time, while others need less, and some are running on limited energy and capacity. We invite you to take care of yourselves throughout the sessions and whatever ways are most comfortable for you, because access is ongoing and constantly being negotiated.

We have also built into the sessions several seven minute access breaks. We hope by building these into the sessions, we are able to practice collective care for the panelists and those of you in attendance today. Furthermore, we have a fantastic access doula today with us, Bri Noonan. If you have any access, needs or questions that need attention, please send them a message in the chat and we will do our best to support you.

Finally, a note on language and pace as it relates to the specific needs that emerge among the long hauler community and are relevant for our sessions today. As a result of Long COVID, language and memory can be increasingly difficult and frustrating. For long haulers, this can manifest in challenges speaking and memory recall. These experiences can be shame inducing and debilitating for folks who are navigating new baselines of embodiment and learning to stop, rest and pace.

These experiences are also a part of crip time, and so, riffing off of disability studies scholar Allison Kafer, we invite you today to reflect on the ways long haulers are bending the clock to meet their diverse and emergent access needs.

03:11 - 03:38

>> Jacquie

Wow. Thank you so much, Sarah, and thank you to everyone here. This is Jacquie Luciano speaking, and I’d just like to share that it's so incredibly challenging to organize and participate in an event like this while living with Long COVID and non apparent disabilities. Thank you all for understanding that I'll be having my camera off today for accessibility needs, as I am currently in a relapse state due to Long COVID.

My pronouns are she/her and my image shows that I am a middle aged Filipina American woman with shoulder length wavy dark brown hair, brown eyes, a black blouse, and there's a bright beige wall. Sarah and I met while collaborating on UIC’s Dr. Jennifer Brier and Strategies for High Impact Long COVID Justice Project. Listening for the Long Haul, which you'll be hearing more about shortly.

We are so excited for this collaboration and incredibly grateful for them to be here today with us. We are also delighted to welcome all of our panelists today, and we hope you, our audience, will join us in being part of this Long COVID revolution. And also want to add a shout out to Beth at Ennis Captioning for providing our live captions. And during this webinar, please enter in any comments and questions in the chat and we will discuss them at 12:00. And now, without further ado, I'm honored to introduce Emi Kane, Director of Strategies for High Impact and Long COVID Justice, along with our moderator and project manager for Listening for the Long Haul, Kaimara Herron.

04:54 - 05:28

>> Emi

Hi, everyone. My name is Emi. My pronouns are she/her. I am a mixed race, light tan skinned person with long dark brown hair, brown eyes. I have bangs, and I'm wearing a black buttoned up short sleeve t-shirt with. I have, like, a green door in my background that's blurred out. First of all, I want to say thank you to Jacquie and Sarah And everybody, who helped make the webinar possible.

This has been. Yeah. it has come together very quickly, and I'm just really excited for today's conversations. I was asked to speak a little bit about Long COVID Justice And the work that we do through our parent organization Strategies for High Impact.

So we are, our official mission statement is we are leading collective efforts to confront the Long COVID crisis while centering racial, social, economic, and disability justice. Our work is done by and for chronically ill and disabled people, our families, and our communities. We were started by chronically ill and disabled people, many of whom were sick for many years before 2020, and many of whom are newly disabled by Long COVID.

We came together 2021, in a moment when we saw a chance to connect the dots between Long COVID and other infection associated chronic conditions like chronic Lyme, ME/CFS, and many others, and to make sure that in the temporary rush of attention paid to COVID, Long COVID and Covid did not get exceptionalized among other conditions that have been historically under-researched, underfunded, misunderstood and underdiagnosed.

We want to make sure that funding or do what we could to make sure that funding research dollars, and attention was directed in a more holistic way. And we also wanted to organize newly disabled folks into disability justice frameworks and an intersectional approach to COVID Long COVID and disability, and to connect those newly disabled folks to existing networks of disability organizing.

I've been doing disability justice organizing for about 20 years. And it's through that perspective that I come to this work. And so we do this work through a few buckets. One is Research and Action, which includes policy advocacy, and patient led, participatory action research projects. Organizing, community organizing and network building and then narrative change.

And so one of our narrative change priorities is amplifying the voices and stories of BIPOC, living with Long COVID and other IACC’s, again, because our communities are disproportionately impacted by Long COVID, but are often left out of dominant narratives about chronic illness in general. And to that end, we run a BIPOC communicators fellowship. Jacquie and I'm sure a few others on this call are members.

And we also work on Listening for the Long Haul, which Jacquie had mentioned, which is an oral history project in partnership with the University of Illinois Chicago, and has become another way for us to amplify the voices of BIPOC living with Long COVID and in-currently doesn't prioritize our stories for several reasons.

And so I think I'm going to pass this off to Kaimara, to talk about the work of Listening  for the Long Haul in more detail and introduce the website that we will hopefully be- We’ll be launching any day.

08:34 - 08:55

>> Kaimara

Thanks so much, Emi. Good morning and hello. I'm Kaimara Herron, PhD candidate in history at the University of Illinois at Chicago. And project manager for the Listening for the Long Haul oral history project. And one of today's moderators, as Sarah mentioned.

I'm an African American woman with a short black afro wearing a green top. As Emi mentioned, as a collaboration between Long COVID justice and history moves, a public history project based at the University of Illinois at Chicago. Listening for the Long Haul is an oral history documenting the experiences and insights of 21 people living with Long COVID and associated conditions. And today, I have a very exciting preview of the website that it has been mentioned will be launching soon. I'm going to share my screen now.

So Listening for the Long Haul engages deeply in listening as a method for historical inquiry and rather than as a singular linear narrative of COVID-19 and Long COVID, the project is more responsive to the complex and contradictory realities of its narrators’ lives. And the two primary ways into these long haul narratives, are through the complete interviews, individual interviews, excuse me, arranged, by our narrators.

Here on our Oral histories page. And secondly, by theme. So the listening team distilled hours of narration into six thematic categories that have we have exhausted portions of each interview into these thematic playlists for visitors to listen in on the very surprising ways that narrators were actually speaking with one another across their interviews. So the themes we have are time, where we found narrators discussing how chronic illness shapes and warps time, as well as how they situate themselves in history both within and beyond this particular moment in time.

Next is the body, where we view the body as a site, as a source of learning, discovery and transformation. And while narrators express a range of feelings about the emotional and physical experiences of chronic illness. Next we have community building, where you'll find narrators exploring cycles of finding, sustaining, and losing community, as well as how virtual space remains an essential site for people living with Long COVID and associated conditions. Our next theme is the medical establishment and clinical settings. Narrators describe harrowing efforts in advocating for themselves and for those in their care, while being disillusioned with medical providers and healthcare institutions. Next, we have the state. You'll find narrators discussing the state's response to COVID-19 and to Long COVID, as well as living through the supposed end of the COVID-19 pandemic, as declared in May 2023. As they navigate the inhospitable nature of federal and state funding support and policymaking. And here are a few of those topics, those excerpts.

And lastly, we have capitalism, where narrators found themselves simultaneously questioning and raging at the imperative to be productive for capital profit, while knowing that interdependence rather than independence is the way forward. Relatedly, since Listening for the Long Haul is a fundamentally collaborative project, we thank our partners, and also share resources that we have collectively sourced.

And I’ll end my share there. With all that said. Sorry, let me go back. Okay.

With all that said, the site is not live yet. It is coming along slowly. And all at once. And I am, however, able to share the domains where we will find the live site very soon. We'll share these in the chat, as well as places to bookmark and to visit. And now I'll stop my share.

Okay. Now we will shift into the most essential portion of this morning's program to hear from our incredible panelists. We'll begin by hearing from the first three of our six panelists. That's Gabriel, Lygia and Chimére, who each introduce themselves as they share their Long COVID journeys, experiences with Listening for the Long Haul oral history project.

What resources and strategies they found have helped post-infection. And anything more our panelists feel is important to share about living with chronic illness, disability and disability justice. Afterwards, we'll take a short break. Then we'll return to hear from our remaining three panelists, Tracey, Maynard and Jacquie.. Then we will take a second break before concluding the session with a Q&A discussion.

And now, to make the best use of our time listening and breathing together, I'm happy to introduce our first panelist, Gabriel.

14:48 - 15:05

>> Gabriel

Hi, I’m Gabriel San Emeterio. I am the co-founder of Strategies for High Impact and Long COVID Justice, and it's an honor to be here with all of you. Yeah. I have been living with complex, chronic conditions for many years.

HIV is one of them. I've been living with HIV for 17 years. I likely contracted Lyme around that time and it went undiagnosed and untreated for about three years. And it was ravaging my body, my joints. And it didn't get diagnosed until I developed really bad neurological symptoms.

So after those two really severe infections, I developed chronic fatigue, pain, a whole host of disabling symptoms, and eventually I was diagnosed with ME/CFS. But that took. That's myalgic encephalomyelitis. ME/CFS for short. I slowed down for the interpretation and yeah, for years, I couldn't get diagnosed because it's incredibly difficult to get an ME diagnosis. And prior to getting an appropriate diagnosis, I kept getting the wrong advice from medical professionals based on me as a young person.

I was in my late 20s, early 30s, and they insisted that I exercised and that I pushed through my symptoms because they said that I needed to improve my physical condition. Needless to say, for those who know, it didn't work and it just had me on this constant cycle of crashing and symptom exacerbation. Which was very frustrating and demoralizing. And I eventually I also was told by one rheumatologist that there was nothing I could do, even if I had chronic fatigue syndrome or ME/CFS, which was completely untrue. Though there are no FDA approved treatments, there are management strategies, most importantly, pacing, which has helped me immensely.

I had to radically alter my life, but it really has worked to manage my symptoms more than anything I will mention. I mean, there are medications that I have tried, and they also help. But pacing is integral to how I live my life and how I manage my symptoms. This is how I came to work in the Long COVID space, based on my experience living with associated conditions as you know, Long COVID is not one thing, and there are more than 200 symptoms that are associated with it. So Long COVID can look vastly different for everyone who is experiencing it. And I was very fortunate to not get COVID. So I worked on Long COVID issues based on my experience living with ME and the first time I got COVID was a couple of years into the pandemic, and it's when masking became optional.

So I think the that it is pertinent to highlight how the pandemic really made many of us aware of our interconnectedness and the air we breathe and how important it is. So once mitigation strategies were highly politicized and became, were being abandoned is when I contracted COVID for the first time.

I was able to get Paxlovid. I was very fortunate and I experienced, fully symptomatic rebound. So it extended how sick I was. And after I developed even more symptoms and my ME/CFS symptoms became more unpredictable, and I developed symptoms that were very consistent with Long COVID.

And even six months to a year after I had it, I continued to experience the symptoms. At that point, I asked my HIV provider if I could get a diagnosis of Long COVID because of how it had thrown my life into disarray. And my HIV provider, who's great in many aspects, said to me, well, you already had a lot going on, so I don't know.

And to this day Long COVID shows up in my chart, as self reported. And it's not like on the list, sort of provider, given diagnosis, which, you know, many institutions conduct, studies through electronic health records. And that's why I felt it was necessary to have the diagnosis in my record, because they don't come and ask us what our experiences are.

They go and look at the electronic health records to look at, to do epidemiological studies, to look at symptomatology, to do, population, etc.. So as a Latina person, I thought it was important to have that in my record. Anyway, I got COVID a second time and that's when breathing became difficult with COVID, and not necessarily because I had respiratory symptoms, but because of the deep fatigue that it exacerbated.

And, this would really make sense to those who have experienced this extreme fatigue that it sort of just debilitated the body at its deepest core. And so even getting enough air becomes difficult because it's such an effort. So with those experiences, working on Listening for the Long Haul has been humbling and rewarding because I got to experience community and connect with people who understand.

And, even if they didn't experience the same as me. They just trust and believe my experience. Like, I didn't need to convince them. And this shared experience, for many of us, the shared experience is actually using our limited energy to explain and try to convince most of our loved ones and others, such as medical providers of what we're experiencing to try to get them to understand that symptoms that they can't see, symptoms that fluctuate in severity are actually happening to us, and that it's not just that we are anxious or we're depressed or we don't want to get out of bed. Those are a lot of misconceptions that I think are very common.

You can see them throughout the stories in Listening for the Long Haul.. I try to practice disability justice. I mean, I work in the field, and I also try to practice it. I'm an educator, I, at work, I teach graduate level classes, and I try to build time so that assignments have flexible due dates for my students, for instance.

And I encourage them to not come to class when they're not feeling well. Since educational institutions have become really lax on masking and actually now discourage it or flat out prohibit it, which has been incredibly disheartening. But I think it's really interesting when I see a student ask for an extension and I tell them to please make sure they get to rest, and then they can tell me when they can have the assignment in.

And, for many, it's the first time they experience it, from a professor. So these are just little examples of how pacing and living my life in crip time. Have helped me extend grace and try to live by the principles set by Sins Invalid and their ten principles of disability justice and other concepts such as crip time from many disability theorists such as Allison Kafer, who was mentioned earlier.

And yeah, I think that's enough from me, probably. There are other wonderful panelists that I'm really honored to be here sharing this space with. Thank you all for listening. And thank you for being here.

25:09 - 25:18

>> Kaimara

Thank you so much, Gabriel. And now we'll hear from Lygia. Whenever you're ready.

25:20 - 25:48

>> Lygia

Hi, there. My name is Lygia Navarro. I am speaking to you from Toronto in Canada. I am a white woman, in my mid 40s. I have brown hair that's a little bit longer than my shoulders. And it's half pulled back and, brown eyes, red shirt. And I have paintings, with black, white and red long brushstrokes behind me.

I'm going to share my screen to do a bit of a slideshow. Bear with me a tiny bit here. Okay. So to tell you a little bit about myself. My name is Lygia, again. And I've been living with Long COVID

for a little bit over four years.

But I had ME/CFS and POTS for eight years before that. I wasn't able to get diagnosed until right around when I developed Long COVID, so, I, like many of the other panelists, have a longstanding experience with chronic illness, a longstanding experience with being ignored by medicine, with, medical misogyny, you know, being told that it was normal to be tired when I had a small child.

When I had, long workup for POTS, you know, like a two week old to monitor and stress tests and all of these other things. Being told that I had anxiety. So that's my that's my personal experience. And part of why I'm here is because I am an independent or freelance journalist, and I've been covering Long COVID and disability a lot over the past few years.

Since becoming more disabled myself. I'm going to have to take breaks throughout because I have difficulty breathing. Especially when I'm talking for a long time, which I don't do super frequently. I also just want to back up a tiny bit to say thank you to Sarah and Jacquie for organizing this.

The ability to be in this space with other disabled people, and other chronically ill people who do things like sit in their beds like I am with my pillows behind me. And who need to take breaks to be able to breathe. It feels so, like such a caring community that we can normalize that.

Since I think a lot of us in our everyday life feel like that is, you know, that we have to apologize for that. I'm trying not to apologize for it in general, but, you know, so I'm also a contributing writer at The Sick Times, which, if you aren't aware of The Sick Times yet, it's an amazing resource.

It's a nonprofit news outlet that was started a little bit over a year ago just to cover Long COVID, the continuing COVID pandemic, and ME/CFS and other associated illnesses. And, I, you know, independent of my connection to them. I really believe that The Sick Times is doing the most important work on Long COVID in the media.

I also am the editorial director of the Disabled Journalists Association, which is getting ready to launch very shortly. And we're in addition to supporting disabled journalists. We're also going to be producing disability coverage. So I encourage you to follow us on social media. And when I'm done with my presentation, I can include links in the chat. Oops. Let me see. Okay.

So first, Jacquie asked me to speak a little bit about some work that I've done on Long COVID. And I want to start with talking about a very personal essay that I wrote, in I wrote it in early 2023. So it's interesting. I don't necessarily feel the same way as I did then, but, it was about me having to grapple with becoming really, really sick from Long COVID.

And the way that society has left people with Long COVID and disabled people and immunocompromised people behind as the pandemic continues. And so it was written for Switchyard, which is a literary magazine out of the University of Tulsa. So I'll read a little bit, just to give you snippets from the piece. This is the very beginning paragraph.

My world is 640ft². I spend most days on my bed as I am now propped up by pillows, my legs covered with a wool blanket to stanch the pain. I forgot to mention, sorry, this is an aside. I also have small fiber neuropathy, which a lot of us, with Long COVID and ME/CFS have.

From my windows all I can see are a row of ginkgoes, a dozen condo high rises, and open sky. On a lucky day, there will be snow or an orange sunset. Or a red tailed hawk floating on warm currents, hunting for prey, describing what was once my life is like trying to recapture a sensation, a place that only ever existed in a dream.

Yet what I mourn most more than moving my body with ease, or even leaving my apartment, is my lost faith in humanity. What I have been forced to witness, I cannot unsee. Bodies like mine. Lives like mine are the future. And we are forsaken and ignored precisely because of that truth. We represent what most of the world does not want to recognize as possible.

The pandemic is still here, and it may yet come for you. I'm going to keep reading a little bit, but I just wanted to, as an aside, say I wholeheartedly believe this two years later. I believe that the world will only start to pay attention to Long COVID when so many people have this illness that it's not ignorable anymore.

And I think with every month, with every year, that becomes more and more true. But it's going to get to the point where, you know, more than half the population has Long COVID and people are going to have to start paying attention to it when it's far too late. This is about my very early infection and then reinfection. In the semi-conscious fog of my afternoon naps, my legs aching, I repeated to myself all I would do if I could ever move again. I will walk, I told myself.

Ice skate, hike, bike, swim, dance. I understood that nothing was the same. Showering, even seated, left me feeling as if I had just run five marathons. Sex, on the very rare occasions that we attempted it left me gasping so forcefully for air that I cried from fear. There was so much wrapped up in learning to live with a disability in my emotional relationship to my own body.

Mostly I felt profound loss since there was no assurance I would ever recover. I ached to travel, to be outside. In waking fantasies, I returned to my favorite places. The island off Sardinia, where I ate fresh pasta with sea urchin row and swam topless.

The Yukon, where I taught my child to love hiking and spotted a grizzly bear. The foggy beaches and scorching mountain rivers of my Northern California adolescence. Later, I would remember 2022 as the summer when people stopped caring.

The Washington Post interviewed Americans taking flight while knowingly COVID positive, and CDC research later showed that 81% of airplane bathroom wastewater samples had Omicron RNA. Friends who were very careful about COVID in 2020 and 2021 now posted photos on social media of themselves traveling or crowded inside or crowded inside public spaces, unmasked as if they couldn't be reinfected, couldn't get Long COVID.

Did it ever mat- Did it only ever matter to protect themselves? Sorry, I just need to take a quick, breathing prick. I grieve all that has been taken from me. The enjoyment of my body. The friends of decades who have disappeared.

My health. The chance to watch my child experience a normal childhood. And I grieve for my family. Our lives are filled with indignity after indignity. My husband was- must wash my hair now. Bring me food in bed. He's always dead tired and on the brink. And we receive so little help.

This fact alone leaves me aching. I am terrified of the future. I fear that if my husband ever becomes ill, I won't be able to care for him as he has so selflessly cared for me. I fear my life will be cut short by years or decades by covering COVID's lingering effects.

Heart attacks, strokes, dementia that scientists weren't warned about due to damage to our brains. Diabetes possibly lurking behind my new blood sugar imbalance. I fear for my body while alive, and wonder how much more suffering I will be forced to withstand. I'm just going to take a brief pause to say that since I wrote this piece, which I'll include the link in the chat, or somebody may already have done that.

I've really come into being disabled and come into the disabled community. I mean, I was always disabled since I was born with neurodivergence and then I didn't understand myself to be disabled until I got Long COVID, and became so much sicker. And now I use a wheelchair.

But, you know, it's been a really, powerful experience and an affirming experience to understand that I'm disabled and understand that I am part of this community, that believes so strongly in justice for our people, and believes in caring for each other

and caring for people.

So that they won't become chronically ill. So if you do read this piece, read it, understanding that it's part of a journey. As I'm sure many of you who have Long COVID and who have other chronic illnesses and disabilities, probably can understand, you know, recognize that you have been through similar journeys.

So now I'm going to talk a little bit about my reporting. Early on in Long COVID, you know, I'm being a journalist. I'm a bit of a news junkie. And so I paid a lot of attention to who was being covered about Long COVID and who was not being covered and who was being covered was white people.

And, you know, often, strangely, a lot of white men, which, as we know, women get Long COVID as much as, Four times as often as men, or four times as frequently. So, I started to pay attention to what was not, what was public, but what wasn't being published in news articles, which was that people of color were disproportionately affected by Long COVID.

Especially, Latinos and African-Americans. This is talking in the US. And so I sought to figure out how to report on this. So the first piece that I'm going to talk about is one that I wrote for Palabra, which is the multimedia outlet of the National Association for Hispanic Journalists.

The piece was called What Recovery?

And as you can see from this really beautiful illustration that was done, I'll get into the, the details about it in a minute. But I just want to also acknowledge that, I received funding to work on the piece from the Journalism and Women's Symposium, which received funding in turn from the Commonwealth Fund. And then I also received separate funding from the center for Rural Strategies and Grist, which is, an environmental, a nonprofit environmental news outlet.

So I focus the reporting in this piece, specifically on a on an area in Washington state in the Yakima Valley where, where I had contacts and where, it was kind of a great example of the ways in which the early pandemic impacted Latino people.

Sorry. Like many of you, I have even more allergies than I had before COVID. So, as I was saying, I reported the piece, in the Yakima Valley in Washington, which is, I believe it was it's the nation's 12th biggest agricultural production area. So, what played out was that a lot of folks who had been infected early in the pandemic because agriculture was, considered an essential work, were infected and then, you know, developed Long COVID and even though at that time and I'm sure it's still probably the case, statistically, Latinos were the the hardest hit by Long COVID. There was no specific COVID, Long COVID treatment.

And people were having a really hard time getting diagnosed. So, as I did with the last piece, I'll read some snippets and then maybe, tell a little bit more about the story as it goes. And when I wrote this piece, it was the first comprehensive, really intensive look at, Latinas being the hardest hit by Long COVID.

This was in December of 2023. Other outlets were not covering this at all. There's been some coverage since, but it's still not something that the news media really wants to pay attention to. In another story that I was working on, I actually had a Pulitzer Prize winning veteran journalist tell me that I was having a hard time selling a story. In fact, I may have been for this story, but it was.

They said that I was having a hard time selling stories about women of color with Long COVID because I had to make it so that editors could see that their readers would relate. And so why didn't I show that, you know, the more women of color who were infected or, sorry, who developed Long COVID, then you know, there wouldn't be people to serve you your coffee, there wouldn't be people to clean your house.

This was with the understanding that is still very common in journalism, that the quote unquote average reader is a white person. So that just tells you a little bit about how the media works, what the media thinks is important, and what the media actively thinks is not important, which is marginalized people. So this is from earlier in the piece.

What should have been instantly clear, given how disproportionately black and brown communities were hit by COVID-19 was that Long COVID would wallop Americans of color. Are the nation and the medical community willfully ignoring Latino long haulers after sending them into clouds of coronavirus to keep society's privilege safe?

And I spoke to somebody from the UFW Foundation, which is the United Farm Workers, philanthropic wing. And as she said, you can't harvest food through zoom. So what happened was in the Yakima Valley, the Latino community was making sure that the nation could eat while becoming infected. I will later drop her. Whoops. Drop her…Information for you all to follow.

Karla Monterroso is an incredibly important, very early stage long hauler. And she's just a powerhouse mind. That you'll see, a lot of these quotes are from her. So she spent her first year bedbound, and she says with Long COVID, we have to rest in a way that in our culture or Latina culture is very difficult to achieve. We really judge exhaustion.

Karla says, Latino ethics of hard work aren't the principles that are going to serve us with this illness. And that was something that came up really frequently in reporting this piece, was how people, how Latino people who either had Long COVID, might have Long COVID or were family members of people who had Long COVID, had a really difficult time reconciling disability with their lived experience, even if they were disabled and weren't ready to, accept or acknowledge that it was in large part because of work and how central work was to their communities. And I think some of the later quotes will say that too, Victoria was one of the one of my sources who was not comfortable using her real name.

But she developed Long COVID, and even though she had graduate degrees in health related fields, she had a really hard time getting diagnosed and getting any kind of care. And she said, people in this community use their bodies for work. And then another community

a health worker said, if you're Latino, you're a hard worker, period.

What's the opposite of that? If you're not a hard worker, what are you? People don't want to say, I came to this country to work, and all of a sudden I can't anymore. Another person who you should follow and I'll put her name in the chat is Doctor Monica Gutierrez, and she says, or she believes that true rates of Long COVID in Latinos are higher than any reported statistic.

And Karla Monterroso agrees. She said we are under diagnosed by a severe amount. I do not believe the numbers. Our community has not bounced back, says Angie Hinojos, executive director of Centro Cultural Mexicano. This is an organization in Washington. That is going to affect our earning potential for generations.

And then the United Farm Workers foundation, they told me that even though they're not tracking it yet or they weren't a year and a half ago, that their union I organizers here a lot about Long COVID and how it's keeping people out of work. And then, something that was a huge theme in this piece was how difficult it was for Latinos to get diagnosed with Long COVID.

Their doctors would say, oh, you know, it's probably something else. Or, you know, this woman, Victoria, who I mentioned. She kept being told that it was her allergies. It was her allergies. She had this chronic cough. She couldn't sleep at night. And her doctors just said it was allergies.

So I asked Doctor Gutierrez about this. And she said, I think that the doctors are not asking. They're not looking. Do the doctors just look at your diabetes or your blood pressure, but not ask you, did your diabetes get worse when you had COVID? Did your blood pressure get worse? Did you not have blood pressure problems before?

And now do you get dizzy? Do you get headaches? Do you have pains? She believes that many, if not most, Latinos with Long COVID aren't getting care whom she calls the ones that were missing. And these are a couple, other quotes from Karla Monterroso. I have thought a lot about how much it takes to put yourself in danger every single day.

You have to say, oh, it's fine, people are exaggerating or you get that you're in existential hell all of the time. And she said this when we were talking about, you know, how Latino workers who, you know, are still in essential jobs, even though that's not a category that people really talk about anymore and just can't stop, you know, have to keep going to work, even if they're at risk.

And then we also talked about how people with Long COVID really embody the pandemic. And she told me how she had, kind of been forgotten by some of her family members. And she said, I am living, breathing proof of a pandemic no one wants to admit it still happening and that there is no cure for what I have. That is a really scary possibility. This was again from her, I'm afraid for us.

It's just going to be disability after disability after disability. We have to start in our small communities, building caring infrastructure so that we can help each other. I am clear no one is coming to save us. We've got to save us. And this. I believe that this is so related to this event, to Long COVID justice, to, Listening for the Long Haul that we all have to support each other because we've learned firsthand, how little support there is. So another aspect of this piece that was really, really important to me. So the piece was also translated into Spanish. And what was something that was really important was that it included really hands on, easy, like plain language, essentially.

Instructions about how to get help if you think that you have Long COVID, so that people could, like, take their phone with these instructions to their doctor and say, hey, listen, you know, read this article or I want you to refer me to a Long COVID clinic. And then also we had, graphics, about wearing a mask, getting the vaccine, how to rest when you have COVID to potentially try to, avoid developing Long COVID.

And also the idea of taking Paxlovid and metformin. And this was really important to me to have these visuals because, as I said, it's just something that, you know, people could show to their family members, people could show to others in their community. And it's just a way to get information out that other sources of information may not be as effective. I'm trying to think really quickly. If there was anything else about this article that I meant to mention.

There's a lot of information in the piece about what Latinas face and still face. And then related to this, I just wanted to give a shout out to the package that Long COVID justice and The Sick Times produced, called Long COVID Essentials. Which are these research sheets that are 1 or 2 pages, I think, in English. They're all one page, just one page. But in Spanish they're often two pages.

About a plethora of Long COVID and ME topics as well as POTS and a bunch of other things. And I translated them into Spanish and just, you know, reading these pieces, even as somebody who is super well informed and I, you know, I read a lot of medical journals about Long COVID and I learned a ton.

I learned a lot about potential meds that might help. So somebody may have already put that in the chat, because I see that theres, some of the chat is lighting up a little bit, but, these are great resources, both English and Spanish.

And I know that there's, you know, maybe the possibility if there's the human power to also translate them into other languages and just really quickly, I unfortunately couldn't get the audio together to share this, but, I also produced a piece, in the summer of last year, for a health program on NPR called The Pulse, which also received funding from the Commonwealth Fund. And this piece was looking specifically at Long COVID care in New York City.

And, you know, it was so frustrating. The main person who I or the main, the main person with Long COVID who I focused on in this piece, whose name is Sabrina. You know, she is Puerto Rican and African American and she's had Long COVID for I think at that point it was three years. And even though she saw a doctor at one of the hospitals that has Long COVID clinic, she had never been referred.

She actually didn't even know that there was what was specific Long COVID care. And it just demonstrates how poorly, Long COVID medical resources are reaching people of color, especially women of color. And instead, you know, many people, I think, at all of the Long COVID clinics whose directors I spoke with, you know, they all told me that their patient lists or their patient, you know, populations are majority white.

So what happens is, you know, white people, white women in particular are the ones who are, you know, have the resources, have the time, maybe, have the spoons to find, care. But other people, in fact, the people who are hardest hit women of color, are not having equal access to that care. So that's it for me. And, I hope to hear from some of you who have been listening in and, you know, feel free.

Please always to contact me if you have, story ideas about Long COVID. ME/CFS, the pandemic, disability, that you feel like need to get out there. And I'm happy to chat with you. Thank you so much.

53:18 - 53:27

>> Kaimara

Thank you so much. Thank you so much, Lygia. And now, I'd like to welcome Chimére, to speak and share.

53:27 - 53:59

>> Chimére

Hi, everybody, this is me, Chimére. I am an African American or black woman  with a short theta haircut. I'm wearing clear glasses with black, rims. I am also wearing a blue top. And, and black earrings with, that are felt with gold, trimming. I'm going to tell you right now that, today, as the old folks used to say in my community, I have a crying spirit.

As some of you all may know,I am still very much fully entrenched and grief over the loss. My aunt, D. Carol Smith, or who some of you all may know as Auntie D because I've been  talking about her a lot lately. On all of my socials and my Substack. So I am going to do my very best, as I always try to do to get through this.

Bear with me. And I won't take up too much of your time. I'm going to share my screen. I'm going to share my presentation now because I do have a presentation. I tried very hard to be descriptive about the photos that I included. And I'm going to go from there. Thank you beforehand. And thank you all to those of you all, who invited me.

I appreciate that, and thank you so much for your patience, as I have not been able to attend meetings or be as engrossed with the planning process as I like to be. So Because I didn't know

much about today, I decided to do what a teacher does. And I decided to talk about the fact that everybody breathes fine until they can't.

And so, in this I'm going to talk to you about how Long COVID forces or forced me, a black woman, to re-evaluate places and people that I once deemed safe. I am a Long COVID activist for over five years. I am a writer, speaker, and consultant in that, industry and arena because I do believe that Long COVID now is its own health industry. And I am a perpetual line staffer.

Some of you all may know that for the good or the bad. I, my questions about the racism and the exclusion of black people in Long COVID and ME/CFS spaces has gotten me into some a lot of  trouble, some good, and some not so good. So in the photo, you see me, I'm a black, brown complexion black woman with a very short haircut.

The photo that you see is encased in a lime green, yellowish colored circle. I'm also the director of the Black Long COVID Experience, which is right now in the very, early stages of trying to inspire and educate and motivate black people with Long COVID to tell their stories, to safely advocate for their Long COVID needs and health care. And also for social services that we hope will still remain in place after this year.

Wink, wink, if you know what I mean. So breathing is a cool thing, right? We don't even think about breathing most of all. This is paying homage to breathing for justice. So I want to talk about breathing. And so breathing is so cool because we don't have to think about it. It doesn't require us to do much of anything.

It doesn't threaten us because it comes from our autonomic nervous system. And we often times do it, involuntarily. I'm sorry. We also we often times do it without having to put much consideration into it. So the process is that the air travels to and from our lungs, and our muscles contract and it relaxes in order to provide us with some oxygen so that we can live. That's the coolest thing in the world to me.

As a spiritual person, when I think about, you know, what the Bible says about God breathing into our lungs, get excited. Especially I've been watching these videos, preparing for this, looking how the lungs takes in the air, pushes it out. It travels in like a like a jet in our bodies in order to assure that we receive the proper amount of air that we should. So let's talk about why the breathing may change when it comes to, the pros of it.

What are the good things that happens when our breathing does change, right? When we do think about our breathing. So our reading changes, when we are excited about, something or someone, when we are exhilarated, impassioned. I remember, how I felt, the very first day I realized that I was going to be a good teacher. It wasn't the very first day, October 15th of 2015, in my career. It was December 15th, 2015. I realized then that I had the guts, the bravery.

I had the wherewithal. And I had been training all my life to be a teacher. And so that is something that still to this day impassions me also, when you have confidence, there's something relaxing about your breathing, when you know that you are where you are supposed to be with the people that you're supposed to be with at the right time. Let's talk about why sometimes they are cons and our breathing changes.

And so I realized that fear causes our breathing to change in the opposite direction. Anxiety, depression. Trauma. Being paranoid and being very, distrustful or distrusting can cause our breathing to change in a very negative way. So let's talk about as a black woman, I can only speak to you from my lens at this point in time.

As a black woman, let's talk about some of the things that would cause my breathing or our breathing to positively change. Let's give some flowers to how to when black women breathe, properly and positively. So for me, when my favorite song comes on, I go crazy, my breathing gets erratic. I'm impassioned. When I passed my second driving test, when I passed that test, after I failed it the first time. Failed it after only one minute of driving.

I was very distraught. But when I got my license that second time. Oh, I was over the moon. When my husband got down on his knee, on Sunday. That morning, when he proposed to me back in 2023 after six months of dating. Oh, I was so stoked. And so also, as I mentioned to you, the passion in your career or your education, black women, you talk to any black woman when she is involved, like she's really entrenched

in her career or her education. Oh, there is nothing that stops that sister. She is always breathing and ready, prepared to do what she is supposed to be doing or what she loves to do at that particular time. Some of us like a little bit of, for some of us who like a little bit of, fear in our breathing or fun fear. Horror movies. Now, look, I'm not a fan of horror movies, but I do know some home girls who love the thrill of horror films.

Like, for instance, people have been telling me about Ryan Coogler's Sinners and, and all most of the homegirls I talked to, they were like, oh my God, I was breathing fast the entire time. But it was such a good movie. Okay, here you see me, in a classroom, which I miss very much. I haven't been in a classroom in, oh, my God, over five years.

I'm standing in front of a whiteboard, with a lot of English and language arts guidance and, chart paper and everything. Because in my class, when we used to get down, that's because I was passionate about what I did. So let's talk about on the flip side, the other side of the spectrum, why. What may cause a black woman's breathing to negatively change? We don't focus on this enough. I don't know about you, but, if, maybe you have black friends or other people, those who are joining us today who are black. Have you ever been followed in a store? I have. Terrifying.

Most black women. If you listen to them intently and with and with compassion and empathy, even if they might not tell you what causes them to breathe erratically in a negative direction, they are saying to you, I have a fear of not being and doing enough.

Oftentimes, black women don't breathe properly. We are more likely than anybody else to have asthma and bronchitis, pneumonia and other things because, America, sadly, is the lowest ranking healthcare system according to the common, the Commonwealth Fund, which did an independent study about the ranking of healthcare in the world, and we ranked the lowest.

We breathe erratically or not well when it comes to poor healthcare, because there is a lack of equity in American healthcare, there is a lack of access to care. That means we can't even get in the door to get health care. Also, it also is because  when doctors do see us, they do not offer us treatment plans or management plans to help us care for ourselves and our conditions in a way that is conducive and culturally responsive to us. black women.

My husband is an MTA bus driver in New York City, and every day I worry about whether he will come home or not. Not just because I'm afraid of a bus accident, him having a bus accident. But I've seen recently an uptick in attacks of bus drivers from passengers and I'm always wondering, will my baby come back home because someone got too pissed, and decided to fight him or injure him in any type of way.

As a black woman, my breathing becomes very labored when I'm in an all white setting. Why? Because usually people are staring at me. They're looking at my hair. They are assessing me, looking at my body, my clothes. They're wondering whether I fit in. And they're wondering if. If I feel like I fit in. Why do I think I feel fit?

Feel like I fit in? So then that makes me feel like I don't fit in. So that's something interesting to take into consideration. So here's the thing about me and my breathing. I'm reading a book now that talks about emotional, immature parents. And so I'll tell you this.

I am a champion at labored, fearful, paranoid breathing. How’d I learned that? I've breathed like that since I was about 4 or 5. This little girl is not me. But she looks like me, doesn't she? She is my niece, Monica. I call her Stankadanka. Because my brother and I are estranged.

I don't see her often. She's another person that makes me feel like sometimes the breathing becomes labored because I wish I had a relationship with her, but I don't. But here's what I'll tell you about childhood. And so those of you all who are raising children, you're raising grandchildren or your nieces or your nephews or whomever.

Or if you some, if you are somebody's honorary auntie or uncle, or whomever. I'll tell you some things that can cause a child that is raised by an emotionally immature parent. Why our breathing may change in a negative direction. It is because.

I learned at a very young age that Sandra, my parent, she did not like or love me. When she would come in the door, I could tell just by how she closed the door or slammed it, how she was feeling and what kind of evening that we were going to have.

It's the reason why today I've had about 5 or 6 panic attacks. I can tell by the sound of her voice. I could hear her breathing, her sighing. That whether or not it was going to be a hellacious night or decent one, because they were never great.

And children learn very early how to be perceptive based upon how their parents care for them. So while some people may think, oh my goodness, why do why do black women have problems

with their breathing? It's because usually most of the time we have been having these kinds of issues for years since childhood. Being raised by an emotionally, immature parent teaches

you how to be perceptive. So one thing about me, I am very clear. When people love me, when they don't like me, when they tolerate me. And when, when I need to pretend or when I need to just disengage.

Monica, as I mentioned, Stankadanka, She is a, black little girl with mocha brown skin. She's wearing a purple hoodie with a, She has a pink and purple, I'm sorry, a purple and blue lunch tray. And, she's holding some vegan sausage because. Y’all, she's vegan.

She looks just like her auntie, who she calls “Chemille.” She doesn't call me Chimére, she calls me “Chemille.” Where should black women feel safe in their breathing? Home, on the job, at school. We should also have the right to feel like we can breathe in hospitals and doctors’ offices. The irony.

At the park, at concerts, at outside events and social groups like non-COVID social communities and also government offices. Let’s talk about why I no longer feel safe in a few of these places. Because I have been vexed and judged about being disabled from people with their internal and external biases. I've experienced racism, sexism and discrimination.

Story time. Because I already learned how to be a labored, terrified breather since I was five. It didn't hit me until maybe my sixth visit to the hospital in 2020, when I knew by then I had caught COVID. Nobody else seemed to know, but I did. I knew then that I had caught COVID and had Long COVID.

Thanks to so many of you who were on Twitter at the time and in other safe spaces. I knew by June that I had Long COVID, and it wasn't until the sixth visit started to pay attention and how I would breathe when I would go to the registration desk, when I would be led back to, a cold, emergency room, or triage space.

And then, I would realize, oh, my goodness, I'm hardly breathing. It's not because I'm in love with the doctor I'm talking to. It was because I knew that white man usually, or man or woman who had seen me before would automatically say to me, which they often did, What are you doing back here again? Black woman.

They didn't say that part, but I know that they were thinking it. It's the reason why the very first white doctor I met, he said to me, I looked at your chart. I see you're a teacher. What you doing in here? You anxious about the pandemic? And I was like this. No, I'm not. I'm sick.

And so places where I should feel safe breathing and no longer feel safe. Even when I go to the pharmacy, CVS pharmacy, every time they want to stop and talk to me when they feel this prescription five times and they want to say, oh, hey, let me, hey, let me pull you to the side so I can figure out, are you supposed to have this medicine with this medicine?

Yeah. But start breathing weird, because I'm thinking to myself, now, you filled this prescription five times. Why are you looking at me as if I shouldn't have it? Government offices. I can't stand going to social services offices. By the way, they just closed the Social Security office in Poughkeepsie. I wonder why I can't stand going there.

Because those people know no matter how proper I talk or hood I talk, or how I dress or how I look. They are judging me. They want me to be as disabled as my paperwork tells them that I am. Now let's talk about other reasons that Long COVID affects grief and breathing and causes

people to breathe with grief, especially this black woman or other black women.

Recently, as you all know, I experienced the worst four months of my life watching the woman that I loved my entire life dying from uterine cancer. Family estrangement. Oh, I know all about that with Long COVID. I've had to make some very difficult decisions about my life to protect myself.

And that includes family estrangement. That causes grief. I don't know about you, but for me, as a Long COVID patient, each and every time I deal with something more difficult now, I can tell you it feels like I'm not breathing at all. And the thing is about Long COVID is that it was one of the first ways I realized that I am not breathing properly.

Now they said to all of us in the hospital in 2020. You have to be short of breath, have a fever and whatever else they were saying to us that made us prerequisites for testing, which many of us didn't get tested. I had none of those. But Long COVID also taught me that I have been holding my breath, proverbially and literally all my life because I'm a black woman in America who is now disabled.

People pleasing. I used to do that all the time, and I still do sometimes. But I'm telling you, one thing, it’s dissipating. Something else that makes me breathe with grief is when we have groups of Long COVID communities and organizations who say that they are inclusive and they're global, but they're really not.

And everything they’ve done, everything they do, doesn't match what they say. And I also have a fear, and I grieve over the fact that I wonder, “Chimére, do black people even care about what you talking about?” Because the black media doesn't. Sometimes I feel like my message only falls on the ears of white women, which is another ironic thing, but I'm wondering if my purpose is to educate, motivate and inspire black people. How come black people don't seem to care? So I breathe with grief over those things. But alas, they are some things that I have done outside of complaining and being hypocritical that have caused me sometimes to breathe safer.

So when I got tired of complaining, I started to say to myself, what can you do besides sit here in your anger and your hurt and your frustration in cussing these people out on Twitter all day? So I decided to start hosting, doing what I want to see the world do. So I started hosting and planning,

racially inclusive events.

Sorry about the way I spell and misspelled it. An emotionally safe event. So last year we had the Teal Reveal, which was a beautiful, beautiful, virtual, prom for Long COVID and ME/CFS communities or chronically ill communities. It was so beautiful, and I, I hope to do it again this year.

If I feel up to it. This February, I hosted the BLC,  which is a black Long COVID, Black History Month social, chronically committed, which was a ten day event. On all socials where I asked people to participate in the prompts because I'm a teacher at my core, and, what also gives me, makes me breathe easier

is when I'm helping somebody and, I don't always have to tell you who I help, but I'll tell you some things. With the black, with the, chronically committed, event or campaign. I created a game called Black Long COVID Virtual Bingo, which raised, I'm happy to say, over $200.

And I donated half of that to, a beautiful, young lady, 16 years old, in Charlotte, North Carolina, who has Long COVID, her mother, Brooke Keaton, you all some of you all may be familiar with. This baby, started experience, stopped being able to walk properly and was bedridden for a while. And doctors still can't tell her the reasons why. We know it's Long COVID, but we don't know how specific it is.

So I donated half of that to her and her family because helping people is what gives me the most joy. Also, because I understand how many of us physically had a harder time breathing, many women or people with breasts or constrictions or things like that. I started just saying to myself, okay, the bras, you can't fit anymore because I gained some weight.

Which also impacts my breathing. Because of Long COVID, I can't do too much exercise. I donate bras, clothing, and shoes to chronically ill communities. And recently, while I'm reading this book about emotionally immature parents. I breathe easier because I made the tough decision to end two of my emotionally unsafe, familial relationships. That's tough to talk about still, but it does.

When I think about where I'll be in about, when I think about where I'll be when I fully understand why I had to end these relationships. I know I'll breathe easier. Here's where you can find me. Here's a photo of my Auntie D, who I miss very much. Both of us have, hair shaved. We were having a great time So we're smiling together.

You can find me on the Blackest Side Of Long COVID On Substack. You can find me at the Black Long COVID Experience. And you can find me. And here’s my email address. Thank you very much.

01:19:33 - 01:20:07

>> Kaimara

Thank you so much, Chimére. And what a beautiful picture to share with us in your grief. Now, we'll take the first break of the day. I believe we'll set the timer for seven minutes. And when we return, we return to the remainder of our panelists, to continue to. Hear stories of Long COVID and associated conditions. Thank you.

Hello and welcome back, for part one, the Breathing for Justice webinar. We will go ahead and continue our program and hear from our panelists, Tracey, Maynard and Jacquie, who will each introduce themselves. And share their journeys with Long COVID, their experiences with Listening for the Long Haul.

Anything that they found helpful in their post-infection breathing and anything more each panelists would like to share, about living with chronic. Illness, disability. And about disability justice. And now welcome, Tracey, and turn it over to her.

01:20:57 - 01:21:20

>> Tracey

Hello, everybody. I'm going to start out by saying I'm extremely nervous. I'm sort of half reading from a script. I'm typically happy to talk in front of people. I've always been kind of comfortable on stage, but here on screen it's different. It's isolated and away from everybody, and I can't feel the room and I can't get that human energy back.

So I never know if I've lost the crowd without that connection and without that kind of immediate feedback. So I apologize in advance for what might be, a stilted and hesitant delivery. I also have to contend with,as was mentioned before, the limitations the Long COVID has placed on

my body and my mind.

So I want to assure you that if I get stuttering or caught in a loop repeating a word, that I'm fine with it, I'm not worried and I'm not embarrassed. And you don't need to be either. So everything's going to be more or less all right. So, here we go. My name is Tracey Thompson.

And for the next little while, I'm going to be lying to you. I'm going to pretend to be okay, which is a privilege. There's a lot of people with severe Long COVID, severe or very severe presentations of this that don't have the option of sitting up and talking for 10 to 15 minutes, which honestly, I'm already, I am already tired just from having done this much. But I'm going to ignore the pain, the nausea, the disorientation, and looming sort of large in the back of my head, a very strong desire to slip quietly away. I have rested for days to offset the ever present fatigue that I feel, and to try and stave off the crushing fatigue that will probably hit me tomorrow. I’ve pre-written some of these words so that the amorphous tinnitus, the neural tinnitus that we refer to as brain fog that activates by recall and stunts my imagination won't be as obvious.

And I'm going to try very hard to maintain the veneer of professionalism. I'm sorry, I forgot to describe myself. I have on a gray, colored shirt with small silver swallows printed on it, oversize black rimmed glasses. I am a light skinned black woman and I am wearing a salt and pepper sort of wavy shoulder length wig. I am sitting up in bed, propped up against a red pillow. As I said, I'm going to try hard to maintain a veneer of professionalism.

It's required to be taken seriously. I put on these clothes and hair to tell you that I'm a trustworthy person, that I'm one of you. Because our fear of disability and chronic illness is so great that it requires a negation of its effects. Even as we claim to honor and investigate it.

Truthfully, I'm. Not really one of you. Often in these spaces, I find that I am a poor cousin. I was expelled from high school and I have approximately half a semester of art school under my belt. My first career was as a children's book buyer, my second, a bartender, my third, and pretty satisfying, a chef. I hate meetings, I hate sitting still. And I had crafted my work life to avoid office culture, emails and what would then, I guess, Skype. Who really dropped the ball on their advantage? The irony of this might be considered a bit much, even for someone like O’Henry, because now I exist almost exclusively through online meetings, paper works, charts, and a morbid emptiness that passes for life. I'm not built for this. I don't think anyone is built for this. I, came down with COVID, about two weeks after the test run of my what was supposed to be a series of diaspora themed brunch pop ups and two days before restaurants were closed in what is now exaggerated referred to as the lockdown. My initial infection was mild. I honestly didn't believe I had COVID. I'd worked unknowingly sick to shut down the kitchen where I had my regular job, sending salvageable goods to the food bank / soup kitchen just down the street. Open containers and hack prepped meals were shared out amongst our staff and our regulars.

They stayed six feet away from everybody and sanitized every surface, including myself. Camaraderie was still high, though. We imagined two weeks of quote unquote tough times before we were back at our respective homes of the bar, the stove, and the table. For restaurants, those weeks became months, and for me, those months became years.

Years of endlessly falling down the darkest rabbit hole leading not to a cozy warm, but to the Byzantine labyrinth of Long COVID and its associated conditions. I didn't ever suffer the classic symptoms of breathlessness, the clogged lungs, or the struggling to breathe. I did, however, and still do endure days, weeks and months of air hunger when the breath in my lungs refuses to transfer over to my bloodstream, causing my oxygen saturation to dip into the 70s and 80s on a regular basis. My lungs, according to the tests we currently have available, are fine. My brain and body, however, are starving for oxygen. Like many of the afflictions associated with this illness, breathing is the easy part. The part I have control over, and this is where the fantasy of autonomy ends, both internally and unfortunately not for the first time or last, I imagine, externally. As the untold mechanisms that make the machine of your body hum are suddenly out of whack, and you realize quickly, out of your control, you turn to healthcare  professionals for help. And here again, despite your efforts, despite your careful presentation, find yourself at the less than merciful mercy of systemic isms and phobias, I am frustrated when people insist on being surprised that in a world where racism, misogyny, classism, ableism, fat, queer and transphobia run rampant, that the world of medicine suffers the same ills. It's not okay to still be shocked by these things.

White coats and a set of scrubs are now held in the same reverence once reserved for white collars and black habits. They're not only not immune to these failings, but are often designed to amplify them. We've heard enough stories where black, indigenous, racialized folks, marginalized folks are dismissed, accused of drug seeking, outright harmed, or, in worst case scenario, lose their lives. The parts of my story are not so different. A cardiologist acknowledged my heart damage but insisted it must be related to non-existent to a non-existent cocaine addiction. So that was the reason to refuse me care. And internist refused to pass along standard referrals and emergency doc refused a procedure that I'd been sent in for, and went so far as to tell me that the procedure was no longer performed at any hospital anywhere.

It took me three months to correct that mistake. A PCP heard me on a radio interview and offered to be my doctor. Going so far as to contact my health care team, arranging tests and blood work until they saw my face, and suddenly I was out of the area. I was asked about my marijuana use and when I responded that I had none, it was rephrased questioningly as ganja, which must have been in response to my prominent Jamaican accent.

The work of Listening for the Long Haul captures some of these stories stories of medical neglect, of non-existent safety nets, stories that would be lost in the now rapidly disappearing reams of research papers, charts, graphs, charts and graphs. Stories like the one I was lucky enough to listen to. And I'm going to have to ask forgiveness because I have mispronounced her name from the get go, and I will probably continue to mispronounce it.

I haven't been able to reach them to get corrected. Their story is the story of so many, so many growing up with an invisible disability, a chronic illness mild enough to be dismissed as growing pains or laziness, a fate now shared by millions of children unknowingly afflicted with Long COVID. In a world that insists on denying their existence. It's one of the many ways we fail to reckon with the wide scope of disability and the long shadow of ableism.

And so a story is one of Western success. They're studious, hardworking. They came to the United States on a scholarship to continue their education when they were infected with COVID and subsequently developed Long COVID. I would describe their condition as severe. Without family, without community, without roots, and little to nothing in the way of accommodations from their university, they've been forced into the position of working beyond their capacity in order to stay housed, stay enrolled, and maintain their status.

I'm going to The following is an excerpt from a longer quote, the rest of which is available on the Listening the Long Haul website, which we're here to celebrate, and will be available very soon. I going to quote it now, quote: “Disability space or chronic illness space”

In the US, a lot is largely dominated by folks who have some sort of financial or material access. And so when I'm thinking about, you know, the precarity of this condition and why it is terrifying, I'm thinking about people who are unhoused, right? I’m thinking of people, you know, who are stateless. They need to survive in the interim while having to face excruciating, incalculable amounts of pain.

And getting a house is just as important as getting a drug. Being able to know where they're going to eat, or know that they don't have to push their body into PEM because they have no choice is just as important. When we were talking about. And I'm actually going to go back and wrap this up, and give it a little bit more context where they said that they find a lot of Long COVID ME spaces. There's a lot of emphasis on pushing money towards clinical trials and research and drugs, and I understand that. But it's important that we help people survive in the interim.” So if we talk about breath, this is me now back to me. We must talk about who has the room to breathe and who has the room to heal as much as possible.

Who has that room to rest? We know that black and brown populations and are disproportionately impacted by acute COVID infections, but we don't see those same communities represented in Long COVID spaces, movements in research or research initiatives.

Up until recently, the majority of research into myalgic encephalomyelitis the condition of at least 50% of those with Long COVID meet the diagnostic criteria for which show to have an average of 97% white participants over the course of 30 years. We are less likely to be diagnosed and have less access to symptom management, possible treatment, as well as the often extremely meager support available.

Long COVID, like any, has been painted as a white upper middle class women's illness, which serves to minimize even as it disenfranchised. It does not take into consideration who survives long enough to be diagnosed, who can weather the storms, who has access, who has connections, and it conveniently lets misogyny do the rest of the work, painting those resources enough for the long wait with the still loaded brush of hysteria.

Meanwhile, marginalized communities with the luxury of time or money go undiagnosed, pushed farther to the sidelines, suffering silently in back rooms and unstable housing with inadequate access to healthcare or proper nutrition, which leads to inevitable decline and probable early death. It's weird. It's weird to be in a space like this and be so impacted by this illness.

I consider myself to be severe. I am bedridden, I am housebound, I'm incapable of work. I have about two hours of usable energy a day and as the years go by, as you know, if you're in it, if you have Long COVID, You know, this is not a static illness. You don't get sick and stay sick.

You get sick and then things go wrong all over your body in different ways at different times. And not to be morbid, but this is the thing that is going to kill me. It's not going to kill me today, but it's going to lead to an early death, along with the fact that I'm a poor person.

I'm a poor person with lack of access. And that means that the newest, the latest, the best that we get out of all of these great pushes for funding and research is never going to trickle that way down to me. And I still keep fighting, even though I know that within my lifetime, none of those things are going to be available to me. It's really obvious that we fund research. It's really obvious that we educate our healthcare professionals.

It's imperative that we participate on top of this, it's imperative that we participate in direct and or mutual aid to keep the least resources resourced of us alive in the interim, to do everything within our power to hold each other up. There is a special cruelty to the energy of energy limiting conditions and. Decades of seemingly willful ignorance around post-viral illnesses.

And that is true. Sorry, I'm a little bit and I feel I'm a little bit all over the place. And while that is true, the story of neglect and dismissal of disability and chronic illness by our healthcare systems and society at large are not unique. To me, this emphasizes the importance of disability justice, a more holistic approach to the needs of a heterogeneous, very loosely affiliated community of which the colloquially and newly named Long COVID land is the newest microcosm. Again, there's no reason to expect equality or equity in a society that values neither, but it must be in all endeavors, something to strive for. Disability justice aims to do that and should be embraced.

It's difficult for folks newly disabled, newly chronically ill, often to identify as disabled as it immediately puts you, as we know, on the outside of society. And I feel like. We have to do everything we can to be as inclusive as possible at all times.

One of the sort of extra questions on here was, do I have anything to say as far as a call for supporting folks? And that is my biggest. My biggest problem calling is getting people to take whatever measures they can not be infected or reinfected.

The mitigations are imperative. Mask wearing is imperative. Lobbying for clean air in hospitals and institutions like schools where children are being infected over and over and over again, as well as our teachers. So I don't know.

I'm going to share a series of posters that I made, and I hope that I can do this properly. To sort of advance that And of course, I'm in the wrong place, so I'll move this over here. And this this is part of my COVID Can series. This one, of course, is about taking your breath away.

Oh, I'm sorry, guys, I'm not very good at this.

This is about the impacts that COVID can have on you. It's a series of posters with silhouetted images of people surrounded by circles with different, Symptoms.

So COVID can change your mind. Could lead to dark mood, poor memory, insomnia, stress and anger. The breath one that I had, we can suffer from COVID can take your breath and lead to chest pain, wheezing, shortness of breath, blood clots, coughing. Which I think most people

are familiar with.

Here I am now unable to move this. So very sorry for my lack of experience.

COVID can get on your nerves. With tinnitus, chills, sweats, numb hands and feet and nerve pain. Internal tremors that can affect your skin with bruises, hives, broken skin, bloody nails. Obviously can affect your digestive tract with heartburn, nausea, cramps,diarrhea and constipation.

And this is the all in one, sort of most bang for your buck image that I made.

I'll stop sharing now. Thank you for putting up with that. So that's...Those are posters that have been distributed, all over North America and internationally in Puerto Rico, to try to get people to know why it's important to mask up and to have, good airflow and also to maybe understand what it is that's going on with them, because we have so many people walking around that are sick. They got a mild COVID infection, and then two, three weeks, maybe even months later, they suddenly have something going on with their heart or their blood pressure, and they're not making the connection.

And so I'm trying to get people to see that there is a connection between their infection and these associated illnesses, and hopefully get people to do what they can to look out for each other. And I think I've, I’ve stumbled into rambling territory, so I'm going to call it there.

And, thank everybody for, putting this together. I appreciate all of you all.

01:40:23 - 01:40:27

>> Kaimara

Thank you so much, Tracey. Those posters were incredible.

01:40:27 - 01:40:28

>> Tracey

Thank you.

01:40:28 - 01:40:30

>> Kaimara

Sure. In the interest of time, after we hear from our next two panelists, Maynard and Jacquie, we're going to go straight into the Q&A community discussion so that we can end with enough time to give people about a 30 minute break before part two starts at 1:30.

But now I want to welcome Maynard. We're so excited to hear from you.

01:40:58 - 01:41:20

>> Maynard

Good afternoon everyone. I’m Maynard. Filipino American male, tan skin, shoulder length black hair, brown eyes, wearing a gray collared shirt. Thank you for being here in the spirit of support and the willingness to learn. As discussed before, and apologies, but I will be reading what I planned and prepared to share with all of you today.

As mentioned, I too live with my symptoms flaring up or worsening in circumstances like this, and I want to avoid as much embarrassment as possible. My experience with Long COVID has been life changing. It continues to challenge me as a disease and as a disability. As an Asian Filipino male, it has dismantled who I was and who I identified with for a majority of my life

As a male, the symptoms of chronic fatigue, post exertional malaise, chronic pain, insomnia, brain fog, memory deficits, elevated heart rates at rest, headaches, anxiety, and depression continue to defeat me. All of the symptoms this disease has plagued me with these past five years has made me suffer in appearing and feeling helpless.

As an Asian male, I often choose to suffer in silence because I don't want to have the labels of shame, weakness, or disabled. As a nurse, I have always been a patient advocate. Throughout my career, I supported my patients, helping them navigate and understand their illnesses, their treatment options, or the healthcare system.

I was supportive in times of healing and provided comfort in times of sorrow. Suffering with Long COVID. I now have become a self-advocate. If anyone can relate, nursing is a selfless vocation. As a Long COVID sufferer.

I have felt isolated, marginalized, disbelieved and even ridiculed. Before Long COVID, I was highly active, had multiple jobs, participated in multiple organizations, ran half marathons, competed in high intensity athletic challenges, and was the embodiment of the social butterfly. I am none of that now. I live day to day, not in a carpe diem lifestyle, but a lifestyle of swap work.

Choosing to do things at my own risk, having to always consider the consequences. Can I afford to crash out? Literally. And not just for a few hours, but for days or weeks I have had to completely overall who I was.

I now schedule times to be social and active, make plans, prepare myself to have the energy for those events, have courage to often cancel those plans, or to accept being on medications that allow me to even be present, that I know have adverse side effects and will have long term consequences as I continue to choose to take those medications.

Long COVID has stripped me of my nature, my identity, my vocation, and my life. My participation in the Living for the Long Haul Oral History Project has reassured me that I am not alone in this suffering. All those who participated in the project. All of you present on this webinar validate our suffering. Now that my life has flipped,I am more aware that ableism exists. Politics in public health exists. That forums and opportunities for education, awareness, understanding, and compassion like this oral history project are important, especially during these times. We must always live and breathe for justice, not just for the moment, but throughout our life, for our future and the future of those who come after us.

Fortunately, I no longer experience the physical manifestations of being short of breath. I do continue to be exhausted, as some of you can relate to. Exhausted physically, mentally, emotionally, and spiritually. As I feel five years has gone by in a blink and I have lived less than half of it.

I have since adapted and accepted this new life. It did take a while. My life is now what I call the five P's prioritizing, planning, preparing, pacing, and knowing that I will be paying the consequences. There is an aspect I shared in my personal account of the Oral History Project. It just said we often overlook living a life of chronic illness and disability.

It is the financial and economic impacts of Long COVID. Healthcare and medical debt is real. Unemployment and disability is real. I share this as I personally have exhausted my long term disability benefits, drained my savings, withdrawn my retirement, and continue to be on the perilous cycle of denials for Social Security disability over these past five years.

As a health care professional and a person who understands the science research as well as the pros and cons of existing therapies, I had hoped to discover a cure for myself. I have tried numerous therapies, treatments, and medications over the past five years in hopes that something would heal me. I have tried therapies from the west to the east and have even traveled abroad seeking a cure.

Before anyone speculates on my endeavors, I did not want to accept being disabled, nor have I ever thought I would become disabled in this life. Considering everything I did to prevent something like this ever happening to me. I tried returning to work in my career with very few accommodations for a year. Pushing myself day after day just to exist and doing my job.

It was a perilous existence and one that I considered ending myself so as not to suffer anymore. Even during my early illness with COVID, I did. I did my best to avoid hospitalization and even accepted dying at home over the cost of being hospitalized. The cost of healthcare, especially living with chronic illness, is devastating.

I shamefully admit to being in financial ruin and don't look forward to living a life of retirement, considering I just live day to day anyways. Yet I am here speaking to all of you today. Taking my breath for justice. Sharing my story in support of you listening, who may be pacing through life on the same journey. To everyone here and everyone who will hear our stories in the future.

Thank you for breathing with us as we all share the same air.

01:48:31 - 01:48:46

>> Kaimara

Thank you so much, Maynard. Beautiful words. I would like to now welcome Jacquie. And to hear about her story.

01:48:47 - 01:48:56

>> Jacquie

Thank you, Kaimara. I just checking are you able to see my slides. Yes. Oh wonderful. Okay great. Great. Thank you so much.

Hi everyone, I am Jacquie Luciano. And wow. I just want to express how honored I am to have all of our part one presenters here today. What amazing and powerful stories we have heard. A big thank you as well to our participants and our audience for joining us live and sharing your time and energy. I appreciate all of you.

Now my first slide here is titled Breathing for Justice with my name at the bottom and today's date of April 23rd, 2025. Please know that the link to my transcript and slides are available to all. Most include big black words with a light beige background with a teal outline that I will read, and all hyperlinks are in blue with QR codes included that say scan me at the bottom.

And, full disclosure, I didn't have the energy to proofread or run this by my close friends for my presentation. So, everyone, I appreciate your patience and if I say anything incorrectly, please feel free to correct me. And today, I'd like to take a moment to check in with every person here. How's your breathing today and right now? If able and willing, please type your response in the Q&A and we'll have more discussions about it.

One of the central themes we learned, and as you heard today from Listening for the Long Haul, is how Long COVID has affected the way we breathe. But before I delve into that, allow me first to share my Long COVID journey. Next, on slide two. Now in 2020, do you remember where you were when the world shut down in March 2020?

Five years ago, we were living through chaos, widespread COVID-19 infections, confusion, deaths and even shortages of essentials like toilet paper. Frontline and essential workers were left unprotected. I had to wear garbage bags and reuse baggy surgical masks while COVID spread like wildfire through nursing homes. I was working as a nurse consultant, feeling a strong calling to help even though I wanted to be home with my family.

So I adjusted my corporate role to support staff and residents during the lockdown, all while navigating confusing, contradictory public health guidelines and conflicting messages daily. In April 2020, I was exposed to COVID and isolated due to COVID like symptoms. Note that Long COVID is a patient coined term that emerged in 2020,

before the rollout of COVID vaccines, when many people weren't recovering and many of us on the frontlines weren't told about this. As a nurse, I was mandated to get vaccinated and I received three doses. I'm also vaccine injured. It's important to understand that Long COVID and vaccine injury are not the same. Both realities exist and can coexist. Sharing my truth about being vaccine injured does not mean I'm anti-vaccine. It means I'm advocating for honesty and treatments.

Now, December 2021, a month after my booster, I had my first COVID-19 nasal test. It turned out positive and I haven't been the same since. Since 2022, I've racked up thousands in debt, just like Maynard and many that you heard today. Choosing treatments only to find harmful advice, and that insurance rarely covers the actual few interventions that actually provide temporary relief.

I’d like to shout out to my handful of practitioners who dare to think differently, and have supported me along the way. For years, Long COVID and its chronic effects weren't even mentioned. That silence was a failure then, and it still is today. I lost my job and most of my ability to function to regularly care for myself. Hence why I can't have my camera on and working on the frontlines. And as a former public health nurse, I have since realized the lies we've been told.

The lack of public health messaging that pandemics are mass disabling events, and that most COVID cases are allegedly “mild.” Are our stories that you've heard so far today mild to you? That in 2023, And this is a low statistic, by the way, according to a nature article, $218 billion is the projected economic loss in earnings for working aged adults due to Long COVID.

We are not exaggerating. Long COVID involves profound loss and severe financial hardships. And all of us here and everyone around the world deserves justice. In 2024, Long COVID cases continue to rise, yet governments continue to ignore and erase us. There's no financial support. There's no urgency.

There are no FDA approved treatments. There's not even biomarkers. Long COVID is a global public health emergency. But instead of action, funding cuts are implemented. And even Long COVID was erased on covid.gov last week. Where's the Operation Warp Speed for Long COVID and for the growing number of people developing new or worsening disabilities?

I recently had major surgery in December and most of the staff caring for me didn't know about Long COVID or my complex chronic conditions. I'm deeply grateful to Denise at MEAction, who gave me resources to bring to my pre-surgical appointments, and especially to my anesthesiologist to prevent me from worsening.

But why is it up to the chronically ill communities and advocacy organizations to educate and protect patients? Where's our public health and medical institutions? Who are our allies? What about the select few practitioners trying to actually help? Where is their support?

And why are frontline healthcare workers still so under informed and underprepared, with no updated training or policies and procedures in place? It's 2025. Can you imagine being hospitalized or undergoing surgery only to be dismissed, disbelieved, or even threatened with a psychiatric transfer without addressing the root cause?

That happened to me during an E.R. visit, and there are more similar stories. This is what it means to navigate healthcare as a chronically ill, disabled patient living with Long COVID and associated conditions, many can't even access care or leave their homes or beds. Long COVID affects us all. It shouldn’t be politicized and we must fight  and be part of this Long COVID revolution.

Now back to our theme here on slide three. What is one thing we all have in common? Yes, we all have breath in common. We all need to breathe to stay alive. Many of us long haulers have difficulty breathing or experience breathlessness. These next four slides are quotes from long haulers.

As my colleague and I were interviewing Maynard Sasis, registered nurse for Listening for the Long Haul, we were deeply moved by his quote. And here's a quote from his oral history. I was telling myself that unless I need to be intubated, I'd rather just die at home because it's not necessary to go into the hospital and end up with financial fallout for being treated. For me, the acute phase was difficult because most of the major symptoms, like the loss of taste and smell, fatigue, myalgia, cough, and shortness of breath were present. I had shortness of breath, but not to the point where I felt I needed to be intubated or required oxygen therapy. I only noticed that if I overexerted myself, I limited my activity at home. End quote.

Wow. This is one of our first inspirations from for Breathing for Justice.

Death against debt? A frontliner who risked his life as a nurse. Maynard’s quote, in part, reflects a broken system where medical care is so unaffordable in the United States. Survival should not be contingent on what someone can afford. Yet this is our reality.

Like Maynard, millions of us Long haulers have lost our jobs. I am currently unemployable, and I received my second denial for Social Security disability, a system that I paid into but cannot access. Slide five reads another quote. God, I can barely breathe, which is another quote by a long hauler. Nick Bravo. On the right here is a QR code to his inspiring TEDx talk and music on YouTube.

I highly recommend checking his video out. And on slide six, quotes a Michigan WXYZ news article where Long COVID patients used art to show struggle with lingering symptoms. Doctor Santarossa said, “Respiratory problems are a huge kind of factor that's still persistent in Long COVID. And in the artwork, you'll see that often represented in the lungs. And they've drawn flames. Or some are like bound.

It looks like they are bound by barbed wire, or there's like a thorny rose that's almost wrapped around one.” Scan this QR code to watch or read the article to learn more about the artwork. And again, all my links will be accessible and made available. For several months, and still three years later, I often say here on slide seven, I can't breathe.

So many of the millions missing, those also living with ME/CFS, known as Myalgic Encephalomyelitis, Chronic Fatigue Syndrome is a devastating, complex, chronic disease with disabling symptoms that doesn't improve with rest and often worsens with activity. It's hell, and many experienced similar dysfunctional breathing. I often feel guilty for saying I can't breathe.

That phrase reminds me of George Floyd, and when I stood alongside my black (& BIPOC) colleagues on the front line in 2020, witnessing the death of George Floyd and the protest for justice for Black Lives Matter. I Can't Breathe echoes across several painful realities. Just like you heard today with Chimére and Tracey and everyone today.

For those with Long COVID and ME/CFS, and for those suffocated and marginalized by systems of racial injustice and oppression, it's become a call to breathe not just for survival, but for justice, for cross racial and social solidarity. Slide eight shows a quote from Doctor Poon's book titled Asian American is Not a Color.

Page 157:

“Developing and practicing solidarity requires an understanding of the notion that until we are all safe, until we all have justice, until that happens, none of us do.” There's a QR code here that links the book as well. And slide nine reads another quote on page 165. “There is power in knowing history and ourselves and recognizing that our collective communities are capable of transforming institutions, communities, and the power arrangements in the world.” That is why we are here today. We are stronger together as we breathe for justice. I thank UIC’s Recover Study, who introduced me to Dr. Janet Lin and historian, Dr. Jennie Brier. I've come to understand the deep value of oral and public history.

I'm especially looking forward to Jennie's presentation and to hearing from all our amazing afternoon panelists later today. And thanks to Listening for the Long Haul. I had the opportunity to share my story, something my children can return to one day when they are old enough to begin understanding what happened to me, their mom, and their grandma.

My children shouldn't have to experience the same traumas, silence and confusion I did. I was just ten years old when my immigrant mother was misdiagnosed and disabled. I later became a nurse, determined to figure out what happened to her. But even then, I never truly learned (or understood) what she was going through or why.

I, too, have been chronically ill for most of my life. Instead, I followed the systems that neglected to fund and study ME/CFS plus infection and exposure related chronic conditions. They psychologized and harmed my mom. I didn't know what to do about the lies until this pandemic.

Until I became disabled in my late 30s after developing Long COVID and associated conditions, that I finally began to speak up about the isms such as ableism, racism, and sexism. No one should have to endure decades of dismissal, misdiagnosis or neglect. Yet here we are.

Slide ten here has the QR code to the apology letter and poem I wrote to my mother, who is also

one of the hashtag millions missing. This was written for The Color of Long COVID series with The Sick Times and Alice Wong's Disability Visibility Project. Are you interested in an art and poetry night's show? Let us know in the Q&A.

I used to love watching Def Poetry Jam. Now the way we breathe clearly impacts our health. Slide 11 here lists The Sick Times’ article, Don't just breathe clean air. Breathe it well because it's true. Everyone breathes. But how well are we breathing?

Whether or not you've had COVID-19, improving your breathing can help. But always listen to your body and do what's right for you. I had to relearn how to breathe again after my infection, and even now, some breathwork can still trigger a crash and relapse. Another long hauler, who is also a massage therapist, recently introduced me to Nasal Breathing by Patrick McKeown Now, have you found anything that helps your breathing?

Please feel free to share. The tri-colored Long COVID ribbon, seen here on slide 12, was created by long haulers. That symbolizes our truth, gray for loss and grief, teal for hope and support, and black for loneliness and isolation.

Join our disability justice community as we must act now. Long COVID can affect anyone, anywhere, anytime, even after multiple reinfections. This slide 13 lists how we need urgent funding legislation and updated clinical care. There's so much existing research being blocked and ignored. We need stronger education awareness, social support, global collaboration, community solidarity and a movement rooted in disability and social justice.

Why can't Social Security or a dedicated agency right now help us safely recover and return to the workforce? I've been too sick to join studies and yet denied disability because I'm supposedly able to work full time. Even working on this event has caused me to relapse with worsening daily symptoms. Yet I've still been denied. So many do not have income, health insurance or shelter due to Long COVID.

Make it make sense. Don't let anyone silence or gaslight you. If you've ever had COVID, connect the dots to any new symptoms. And please don't forget the children and elders suffering in silence too. To my former colleagues and public health and long-term care, I see you, thank you for your support today.

I urge you to please re-evaluate your Long COVID policies. If you even have any. If not, start one. Update your post infection assessments monitoring and care plans. We all have something to contribute. Ms. Jones, from the Midwest Aids Training and Education Center, reminded me that the success of HIV Aids funding and recognition was always rooted in advocacy.

So I share this with all of you. Stay rooted in advocacy and justice to support yourself. To support us. Because we the people do have the power. Social movements are how we create change together. With that said, slide 14 here Join our ally MEAction, who is igniting a global revolution in ME and Long COVID care.

On May 12th, as the millions missing 2025 are sending out an S.O.S. to save our support systems, save our science and save our society. Join the protest in Washington, D.C. Host your own #MillionsMissing protest or gathering and show up on social media on May 12th. Learn more at MEAction.net and by scanning this QR code.

Now let's take this moment we have now as we collectively make history. Let's breathe for justice in solidarity with love and gratitude. Thank you. Slide 16 includes a list of resources

discussed during the entire presentation, all in one slide that will be made available. And lastly, let's connect on Instagram and Blue Sky at Breathing4Justice, 4, as in the number not spelled out. Or email us at breathing4justice@gmail.com. Thank you again to our sponsors, Illinois Humanities and the American Association of People with disabilities. And thank you to UIC’s Dr. Jennifer Breier, Kaimara and Emi team at Listening for the Long Haul and Strategies for High Impact, Long COVID justice.

Thank you to Pro Bono ASL for providing ASL access and Ennis captioning for providing live captions. Thank you Beth for being here today. And now we can go straight to the Q&A session. Thank you to everyone for your patience and understanding.

02:08:15 - 02:08:49

>> Kaimara

And another thank you Jacquie, as well. Like she said, we have about 15 minutes for a Q&A session so we can start. And with enough time for folks to have about a 30 minute break. For those planning to come To return for part two this afternoon. We have the Q&A chat open. For those who would like to ask questions or share thoughts with our panelists. Or if panelists wish to ask each other questions, that's also encouraged. There are a few questions in the chat. Let's see. There was a question in the chat about, if folks have any thoughts on children or family and caregiving in the context of Long COVID and associated illnesses in relation to COVID. And that's for the panelists. If anyone would share. Here we have the question. Will anyone be addressing the links between neurodivergent, trans, queer, and higher incidents of Long COVID? Okay, Gabriel.

02:11:09 - 02:11:38

>> Gabriel

I mean, I could just say that there is, higher incidence of Long COVID among trans people and neurodivergent people. The reasons are unclear, but likely has to do with the structural determinants of health and experiencing more marginalization and trauma.

In addition to, unstable or more difficult conditions of work and the inability to rest, etc.. So communities that are harder hit by chronic illness, tend to have higher rates of Long COVID.

02:12:04 - 02:12:06

>> Kaimara

Tracey.

02:12:06 - 02:12:39

>> Tracey

I mean, I'm okay. I agree with what  Gabriel said completely. But I also think that there's, a component of if you're already marginalized, you are, probably more likely to be open about the difficulties that you're having as far as like, Long COVID or health struggles that, say, someone who is living a more mainstream life might feel like they need to, like, hide from their friends and family.

So I feel like as a group, like if you if you're already living on the margins, it's more likely that you're going to speak up and say, hey, this is not right. This is not right. What's going on with me? This is not what's right with what's going on with my community, as opposed to people walking around being like, oh, it's just allergies. I'm fine. I've never had COVID. I'm not sick and sort of playing along that middle line. And that's my 2 cents.

02:13:10 - 02:13:15

>> Kaimara

Right. Thank you. I see.

02:13:15 - 02:13:17

>> Lygia

Can I add something also?

02:13:17 - 02:13:20

>> Kaimara

Yes, please.

02:13:20 - 02:13:50

>> Lygia

There has been some written about this, sorry about the link for trans and queer folks. Specifically the So I don't know if at this point if they're still collecting them, but the CDC and the well, the Census Bureau linked with the CDC has been collecting data, for like, the past three or so years or a little bit more, on who gets Long COVID, right.

And so, it's a survey that they do, which in my mind, the survey is like a huge undercount because the survey is done it's an internet survey. So you have to have reliable internet, which for example, like this is from the reporting that I did for that story for palabra.

Latinos, for example, have like much lower rates of having reliable broadband access, but also, trans, specifically trans and bi folks, always have the highest rates, like when you're looking at, sexuality, and gender have the highest rates of Long COVID. So, I agree with both.

Sorry, I agree with what both Tracey and Gabriel said that, you know, social determinants of health, people being like less intent on playing along with what's normal or being more open about the struggles that they deal with. Lack of access to healthcare is a really important one for that. At least for, you know, queer and trans folks that, I mean, the situation currently is just beyond description, of how seriously bad it is.

But this is, you know, obviously been the case for some time that queer and trans folks have had less access to, respectful, quality, reliable healthcare. About neurodivergence Oh. Sorry. I just wanted to say also that, I'll put the link in the chat, but there was a piece written by Miles Griffith, who's one of the editors of The Sick Times.

He actually wrote it for them, which is a news outlet specifically for queer issues about the link. I think it was both for trans and queer folks specifically looking at that trans bi link. That was that's from the census slash CDC data. But also for neurodivergence.

I mean, that's really complicated. You know, there are some things like I believe and I, you know, I filed this away in my memory because it's something that I'm particularly interested in as a trauma survivor and as a journalist who has interviewed a lot of people with Long COVID, I would say, like the majority of whom in their interviews tell me that they are also trauma survivors.

So there's, for example, in my like, mental warehouse of information that I don't know the link to. I'm almost certain that there is a link between being a trauma survivor example, for example, and developing ME/CFS. And so when you're looking at trauma, there have been, you know, for example, let's use ADHD.

There are a lot of reasons why ADHD manifests. Some of them are genetic, some of them are environmental, but some of them also are related to trauma. I would suggest, Gabor Mate's work G A B O R is the first name. And, M A T E- thank you. Emi-is the last name.

His work on trauma and health in general, but specifically trauma and mental health. So even though, you know, what the person asked was specifically about neurodivergence and Long COVID, I do think that the trauma link is really important there because I think neurodivergent people I haven't looked for stats on this,

But I would bet you anything that neurodivergent people also have higher rates of trauma, because if you look at different kinds of neurodivergence, it's harder for us to get care for our neurodivergence. People may experience trauma because of their neurodivergence. People with neurodivergence, like, my types of neurodivergence are caused by trauma.

Both genetic and trauma that I experienced. And so, I do think that there's a link there, and I put this in the chat that this is something that I really hope that there's research on, because I think that it will shed a lot of light on, beyond just, you know, race, gender, sexuality, like your working environment.

I think that other aspects of people's body minds will, in the future, show up to be related to, COVID. Sorry. There's just one other aspect. I believe I could be wrong on this.

It's either ME/CFS or Long COVID or both that, for example, depression or having pre-existing depression or anxiety increases your likelihood of developing them. I'm pretty sure it's Long COVID, but, you know, in my mind, anxiety and depression, especially if they're long standing, are also types of neurodivergence. So clearly, you know, our minds and bodies are very connected. Like, if you look at how many, neuro receptors there are, in the gut, for example, like the, there's just not a real disconnect between them.

Sorry, I'm rambling a little bit, but, these are things that I hope will be elucidated in the future with more research. Yeah.

02:19:35 - 02:19:49

>> Kaimara

Thank you so much. That's very insightful. We have a few more questions in the chat. So I believe the panelists can see them. If there's any question that you're drawn to, please feel free to come off mute.

I'll add another. Someone's asked. I've been struggling with pacing and feeling like an actual human since I got Long COVID in 2022. Are there any suggestions on how to handle pacing? And relatedly, how or did any of the, Listening for the Long Haul influence how the panelists viewed theirs or their own experiences with Long COVID?

02:20:20 - 02:20:22

>> Lygia

Can I just really quickly answer the pacing?

02:20:22 - 02:20:24

>> Kaimara

Yes, please.

02:20:24 - 02:20:49

>> Lygia

This is not probably what you want to hear, Questioner. But I think the issue is that you have to rest more than you think you do. And I'm guilty of not doing this, but I think all of us probably could rest even more. And especially when you're talking about pacing, it's so hard because, you know, living the normal life or I can't remember exactly what the wording was.

To be totally honest, I feel like those of us with Long COVID and other, you know, ME/CFS and other illnesses that are energy depleting. Part of it is that we have to accept that our bodies are not, “normal,” and that is okay. And that we have to live with our bodies, and so we have to treat them well.

This is not a lecture like this is more just probably a reminder to myself and reminders everybody else that, rest something that I have found to be really helpful is the concept of radical rest. So it's like what I'm talking about resting even more than you think we should. The priority of rest over everything else.

Sorry, questioner. I'm not sure exactly what your question was, but I just want to throw that out there because I think it's something that it's something that probably all of us can always remember a bit more.

02:22:02 - 02:22:20

>> Kaimara

Of course. And we have some commenters and some panelists, and other participants sharing info in the Q&A chat, as well. We have time enough for probably one more question.

Let's see. Someone’s asked, any thoughts on why Long COVID was removed from the CDC website? What biomarkers could be used to diagnose Long COVID, as well as any resources for connecting people with Long COVID to the kind of economic support or community support that our panelists have been talking about?

02:23:09 - 02:23:23

>> Chimére

This is Chimére speaking. I wanted to answer that question. And tell the person who asked about pacing, that I did comment on their question. And I hope that they find the comment useful and helpful in some ways.

I think, to be frank, the CDC erased, COVID information because, that is the, that is the rule of the day when it comes to, sadly, U.S government, it seems like those of us who are the most marginalized, the most excluded, the most left out, even as it relates to health conditions and also being very honest and transparent about these chronically health conditions that are also disabling,

the government no longer sees the benefit or the capital in keeping people abreast about what's happening. So I think that's what's happening. You know, sadly, you know, we've seen and heard some of the most atrocious and triggering things lately from the Secretary of Health and Human Services about autism and other forms of neurodivergence and chronic conditions.

And with that, there also have been striking cuts to, you know, the NIH and other communities and other organizations of federal agencies who are responsible for making sure that the public health and those in its communities are safe. And have more than enough knowledge.

So that's the scary part about this is that they think that erasure means that it's not happening. And the saddest part is that it is happening. So, I would highly suggest that, you know, you, if possible, you continue to do your own research, find community within the Long COVID community, people who are willing to be inclusive, compassionate, and empathetic and learn as much as you can. But there are still really great resources, and people who, after five years, are willing to give you  the 101 of what's happening with Long COVID.

But it's very unfortunate, and I worry for each and every one of us, especially our children in schools and all kinds of stuff about what happens when we we avoid and erase pertinent information.

02:26:01 - 02:26:16

>> Kaimara

Thank you, Chimére. And with that, I'll go ahead and we'll wrap up part one of today's Breathing for Justice webinar. We've been sharing thank you's around all day, and we're going to continue to do so.

But thank you to everyone here for your patience and participation today. Thank you to Sarah and Jacquie for bringing us together to learn and breathe. Thank you to our wonderful panelists for sharing your varied and distinct intimate and personal experiences with chronic illness and disability. In grief and in hope.

As well as what strategies, what works for you, and reckoning with the lasting impacts of a global pandemic. Amidst overlapping systems of economic, political and social oppression, racial injustice, misogyny, transphobia, homophobia, and ableism. Breathing for Justice and Listening for the Long Haul, we hope encourages as all Sorry. We believe, encourages us all to leave the evidence of our lives as we are living them today, and to embrace the healing potentials found in listening deeply to, for and with each other. And finally, we invite everyone to return after about, I think we still have about 30, 45 minute break.

For part two, starting at 1:30 p.m. Central Standard Time, when we will hear from Dr. Jennie Brier, Morgan Davies and Dr. Iliana Pagán-Teitelbaum on the impact of Long COVID on communities of color, disability, justice, and how education and oral history can inform policies for pandemics and mass disabling events.

So thank you all again. I hope to see you at 1:30 pm CT.

Part 2

06:19 - 26:14

>> Sarah

Alright. Let's go ahead and get started with this second session. We are so thrilled to welcome you all to the second part of this webinar, Breathing for Justice. And this session, we'll be talking about Long COVID, higher education, the archive, chronic illness, and so much more.

My name is Sarah, and I'm a Korean American person with shoulder length black hair that is curled. I have on pink glasses and I am wearing a light blue and white striped shirt. I will be a moderator for this panel and work with Bri Noonan as an access doula.

Before we get started, we have a couple of access notes and general housekeeping notes to orient us all. First, we want to thank our sponsors, Illinois Humanities and the American Association of People with Disabilities. As well as, thank you to Dr. Jenny Brier and the team at Listening for the Long Haul and Strategies for High Impact, Long COVID Justice.

We also want to give a shout out to Pro Bono ASL for providing ASL translation services today, and Ennis Captioning for providing live captions. Most of us today on the panels are spoonies chronically ill and disabled and working on crip time. Some of us need more time, while others need less, and some are running on limited energy and capacity. So we invite you to take care of yourselves throughout the session in whatever ways are most comfortable for you.

Because access is... because access is ongoing and constantly being negotiated. We've also built into this session a seven minute access breaks For this session, we will hear from all three panelists. First before having a break. We will then turn to our panel discussion and Q&A. We hope by building these into the sessions, we're able to practice collective care for the panelists and those of you in attendance today.

Furthermore, as I noted, we have  a fantastic access doula today with us, Bri Noonan. If you have any access needs or questions that need attention, please send them a message in the chat and we will do our best to support you. Finally, a note on language and pace as it relates to the specific needs that emerge among the long hauler community and are relevant for today.

As a result of Long COVID, language and memory can be increasingly difficult and frustrating. For long haulers, this can manifest in challenges, speaking and memory call to name a few. This can generate diverse responses from folks who are navigating new baselines of embodiment and learning to stop, rest and pace.

These experiences are also a part of crip time, and so, riffing off of disability studies scholar Allison Kafer, we invite you today to reflect on the ways long haulers are bending the clock to meet their diverse and emergent access needs.

And now, without further ado, I am excited and thrilled to introduce our first panelist for today, Dr. Jennie Brier. She is a professor of Gender and Women's Studies and History at the University of Illinois Chicago, and Project Lead for Listening for the Long Haul: A Living History of Long COVID.

03:31 - 04:01

>> Jennie

Thank you so much, Sarah and Jacquie. And thank you, Christina, for signing for me. I appreciate it. I'm so honored to be here today to talk, on this program, Breathing for Justice, that I remember emerging out of Sarah and Jacquie's conversations together and that they have brought it to this level of organization. And, just incredible production is really an honor to get to work with them.

I met Sarah and Jacquie in a class that I taught, I want to say now, two years ago. Which is hard to believe. Speaking of bending time, where we were learning about how oral history can be part of how we understand Long COVID, and it has blossomed into something much larger than I think any of us could have ever imagined. Jacquie came and presented to that class one evening, two springs ago.

And the idea for this project really came out of, an ongoing relationship and converse session that I have with, an activist named JD Davids, who was the former founding director of Long COVID Justice, a project for Strategies for High Impact.

JD and I are both involved in an organization, activist collective called What Would an HIV Doula Do. and What Would an HIV Doula Do? Is a longstanding organization that has been thinking about how to address the ongoing Aids crisis that continues to this day.

Think about what it means to care for one another in times of transition, what it means to think about pandemics as something that are chronic. And JD's work in HIV activism for a for decades before coming to Strategies for High Impact, really aligned with my work, and long time commitment to thinking about the history, both of HIV/AIDS, but also how history can help us think about HIV/AIDSin a much broader context. And that was really the question that I posed as a working historian: how can history as a practice or history as a method, a way of understanding the past, of, understanding its complexity and its complicated-ness, how can a focus on history help this entity called Long COVID Justice? Imagine it's work. How can it potentially amplify the work that Long COVID Justice does, particularly in relation to the idea that they have been at the forefront of making sure that pandemics are chronic?

They are not just, sort of emergent crises that come and go or dissolve. They are ongoing. Longitudinal long standing conditions, but also in particular, that Long COVID is about time. So when Sarah said this notion of crip time or bending the clock, what would it mean for a historian who thinks about time usually change over time in the past.

How could we engage in an ongoing dialogue with people who are thinking about time in relationship to chronic illness, and that convergence, that coming together, that intellectual and political commitment is what produced the ideas that came to be at the center of this project.

So I'm interested in oral history as a practice that anyone can do. Too often it seems like historians are the ones who are the interviewers and, and people narrate their oral histories, but I'm really interested in trying to change that up and bend that dyad in such a way that we can recognize that anyone and everyone can be the historian of their own life.

So if we can agree that, that for us to understand both the history of Long COVID as a chronic condition that likely began sometime in 2020, but we also understand it in relationship to lots of other chronic conditions, but also post infection, chronic conditions. We really can start to understand where people living with Long COVID fit in that historical trajectory.

We can also understand where Long COVID fits in a much larger trajectory, a historical trajectory of changing political landscape and decline in public health enterprises which preceded COVID by a long time. But also very much how Long COVID has been shaped by this current rise and onset of authoritarianism and fascism, white supremacy and the way they function in how Long COVID is experienced, how the state thinks about Long COVID, and how primarily people living

with Long COVID and associated conditions are historians of this tumultuous period that we are currently in. So we really worked for a summer in learning how to do oral history with one another and that is what produced this website that I think has already been shared today.

I'm going to share some other parts of it, to get us back into the swing of things for the second half of the day. And really, it is focused on listening. I think often oral history can be focused on talking and not enough on listening. And so as I watch Christina, sign my words, we're really trying to understand how listening happens both through various forms of cognition, whether it's hearing or, or reading sign language or experiencing sign language or, feeling it in your body, feeling the sound in your body. And then there are just many, many, many more ways to listen. But we're really trying to tap into that experience of how we can understand and experience how people describe their lives in a lot of different ways.

So since we're just having a change in ASL interpreters, I'm going to, just, cue that I'm going to open, file, I'm going to open the website and share the screen, and I'm going to play a recording that is, a product of our sound editor taking the start of all of the zoom conversations that we had.

So for people who are listening and have the sound turned up, it's cacophonous. So I just want to prepare you for that. If you don't like the way it sounds, just turn the sound down. For our sign language interpreters, perhaps you could sign the feeling of it because you won't be able to discern the words.

But I just want you to hear this piece because it speaks to the moment we were doing the work. Every single interview here was done on zoom, which is really a product of this moment in time for us. And here we are back on zoom. So I'm going to switch, I'm going to switch screens now and you'll see the, one of the pages of the website of Listening for the Long Haul. There's a color bar at the top, and maybe we'll look at it some more. And I know you've probably seen some of it already. This is on the about page where I want to spend the rest of my time talking about two pages here.

The first one is our methodology, and the second one is the deep historical listening. So let's start with our methodology. So this gives you a sort of overview of the way we created the project. We trained groups of people from Long COVID Justice and from UIC together to learn how to do oral histories with people living with Long COVID and we have interviewed over 20 people, and almost all of them are featured here.

And you've heard from some of them already, but my two co-panelists are both featured here. and so we can play some of their sound later if they'd like. But I want you to hear this piece that is a product of the sound editor mistakenly running all of the tapes at the same time. This meeting is being recorded. Okay, perfect. All right, so we are here. I am John. Plan on. Making some interpreters just like we. Thank you. When I heard that, And a little hard to hear, but when we, when we, fully launched the website, you'll be able to listen to it in your own space.

But it was really important to us to include that feeling of this meeting is being recorded, of knowing that all of these sounds that were happening at the same time on zooms across the country and really for us across the continent, we had people in Canada, people in the States, we had some, some recordings in Spanish, some in English.

That you were able to hear the confluence of those voices and not necessarily discern them from one another, but know that they were all happening at the same time. The other piece that I want to talk about in closing, is about this concept that I'm really hoping I can learn from all of you today and sort of move forward as, I think about it, which is we came up with the title of the project, Listening for the Long Haul, obviously, to tap into the name the terminology of long haulers, but also to capture this idea of listening and hearing. And that really made me think about what long haul listening is. What does it mean to listen to something for a long time? What does it mean to make a commitment to listen to something as it happens again and again and again? And what is the relationship between this listening for the long haul or long haul listening and this concept that we talked about, some deep listening, which is really being quiet and listening to what's happening, paying attention to what's happening, not imagining what your next sentence is going to be, but listening to what's happening. And then I'm really interested in thinking about this idea of deep historical listening. So what is it like to listen

to all of these oral histories? When the website is done, there will be hundreds of hours of oral history interviews that you can listen to or read.

So we're really trying to think about making sure that they're always accessible to people in different ways, through the sound of it. and also the text of it. And is there a way to practice a kind of deep historical listening that will allow us to understand the sometimes cacophonous meaning of Long COVID and, and what it means to be a long hauler at the same time as we apply this commitment to ongoing listening to the way people talk about what has happened to them and why it's happened to them, and to believe them when they talk about all of these things and how to apply that to, this idea really, of how you bend that clock, how you bend the clock of historical time and how Long COVID helps us see things and hear things and experience things that we couldn't otherwise experience.

So I'll leave it there, and say thank you. Thank you to the interpreters and for having me here. I'm really excited.

19:05 - 19:28

>> Sarah

Thank you, Jennie. This is Sarah. Our next speaker is Morgan Leigh Davies. She is a writer in Brooklyn whose work has appeared in a range of publications, including The Sick Times, Electric Lit, Jezebel, and the Los Angeles Review of Books. She has lived with Long COVID since 2022 and Complex Chronic Illness since 2011. In addition to being a Long COVID advocate, Morgan volunteers as a mentor to young writers through Girls Right Now.

19:37 - 19:54

>> Morgan

Hello everyone. I am thrilled to be here. I have quite a lot to say, so I'll be keeping an eye on the time. And if I have to jump ahead, I will do so. I want to thank. First of all, everyone who has spoken today has been so wonderful.

So, you know, of course, it's upsetting to listen to all of you. Thank you as well, Breathing for Justice and Long COVID Justice for putting all of this together. And the University of Illinois and Strategies for High Impact for making this project possible. I feel really honored to be a part of this oral history and to be participating today. And of course, to Sarah, for moderating this and to our interpreter, as this is the first time I've, I've been interpreted for. So I feel really thrilled about that. But to jump right in, I want to begin by giving an overview of my own history as a patient before, and after I contracted the case of COVID, that would lead to long COVID in the fall of 2022. As Sarah just mentioned, my medical issues began in 2011 when I was a junior in college.

And these symptoms sprang up seemingly without cause. And most of them resisted diagnosis for years to come. In the course of six months or so, I began to experience debilitating, though infrequent migraines, acid reflux and other gastrointestinal issues, lockjaw, and a severe  and mystifying ankle “injury.” I'm doing finger quotes. That was not precipitated by any actual injury.

A fact that few orthopedists over the following years seemed to believe. Yet, all that had happened was that one afternoon, while walking around the Metropolitan Museum of Art with a friend, I simply could not walk on my right ankle any longer. I subsequently found myself walking in an orthopedic boot for months. This barrage of ailments began my long quest to find answers about what was happening inside my body.

As the years passed, my physical ailments multiplied, but almost no doctor was able to provide insight into any of my symptoms. After my right ankle mysteriously failed, I experienced a similar injury in my left shoulder and later in my lower back. But doctors and physical therapists alike regarded these injuries with mystification. Repeated imaging and tests of various body parts showed nothing.

I grew used to hearing doctors cheerfully tell me that my tests or scans had come back normal, at which point I would feel a sense of despair because of positive tests would at least prove that something was wrong with me. The one MRI that my orthopedist did think showed a tear in my ankle ligament was apparently misleading. After I went through multiple stents of wearing the orthopedic boot, that MRI led to an arthroscopic surgery, but when I woke up from the anesthesia, my doctor informed me that there actually hadn't been a tear after all.

Only inflammation. Inflammation, which they had cleaned out. And fortunately, I had good health insurance at this time. Through my father, I was still under 26, which covered this procedure, and it did help. I didn't have to wear the orthopedic boot again, but my ankle has never fully recovered and nor has my shoulder.

A physical therapist simply gave up on that shoulder after months of sessions telling me that I was not worth my continuing to spend a great deal of money on a treatment that was obviously not working for a period of time, especially in my early 20s. I was obsessed with finding a diagnosis. I have many memories of going to doctors appointments and proposing rare diagnoses to them, to try to explain what was causing one or many of my myriad symptoms.

The doctors I saw reacted with sympathy, pity, irritation, or outright callousness. But all of them dismissed my theories. Most of the diagnoses I proposed were, I can readily admit now, absurdly wrong. But the doctors I saw had no alternative theories, and for the most part seemed uninterested in finding answers to my physical problems, especially after they saw my negative test results.

Over the years of appointments, I learned to treat the physicians I saw with skepticism rather than viewing them as awesome figures wielding inaccessible authority and knowledge. Most of these doctors were personally unobjectionable, if unhelpful, but some seemed to view the mystery of my symptoms as a personal attack. During one memorable visit, after a battery of tests had come back normal, I told one gastroenterologist that I was experiencing flares of gastrointestinal attacks and joint pain simultaneously.

She aggressively told me that this was not possible because, according to the tests, there was no inflammation in my body. Instead, she insisted that a medication I took for migraines, which I had begun taking two years after my gastrointestinal troubles began, was responsible for my symptoms. I had no idea how to respond. What can you say to a doctor who tells you pointblank, that you are not experiencing the physical sensations that you are in fact experiencing?

Later, a rheumatologist speculated that I have a form of arthritis caused by gastrointestinal dysfunction. This diagnosis was speculative and not particularly treatable, but I found it vindicating nevertheless. As Meghan O'Rourke writes in her book The Invisible Kingdom, the problem lies less with individual doctors than some, including that gastroenterology are obviously less attuned to their patients than others, than the system that produces them.

The most alarming fact I learned, she writes, when I began my research, was how quickly doctors' empathy wanes. Multiple studies show that it plunges in the third year of medical school, declining when students start seeing patients on rotation and overlooked and overtired, they realize that there is too much work to be done in too little time, or end up districts distancing themselves self protectively from their patients in order to survive.

This dynamic is no doubt enhanced by America's system of managed care dictated by private health insurance companies, private equity firms and other privatized interests, which force doctors to see as many patients as possible in a day to maximize profit. A few weeks ago, I spent an hour at an appointment with a new allergist who meticulously recorded all of my many symptoms in her notes and empathized effusively with my physical distress.

This experience was shocking, not only because I am not used to being taken so seriously or treated so kindly by physicians, but also because I don't think I have ever spent so much time with a doctor at a single appointment before. She had sacrificed her lunch hour to spend that time with me. I am going into so much detail about these past experiences to contextualize the dysfunction of the American medical system, and to ground the experience that I had interfacing with doctors as a Long COVID patient.

And as an aside, I think we all know that what I've described and what I will describe as much less bad than some other people have already said today, in many ways, I'm lucky that I am white, even though obviously what I'm going to say is of more medical discrimination than men. And the fact that I am highly educated and informed about medicine, as I'll continue to say, was an advantage for me.

But I still face a lot of discrimination and unhelpful treatment. So by the time I did get that fateful case of COVID, I was really used to interfacing with doctors, nurses, and other healthcare professionals because I had spent over a decade doing so. I was used to being dismissed, talked down to, and in general not taken seriously. I was used to being treated as a medical mystery with no solution, and I did not expect doctors to be able to treat my symptoms effectively.

By that age, I had mostly given up on the prospect of a satisfying diagnosis for whatever was ailing me. I deeply believed there was some underlying syndrome connecting my symptoms. But whatever it was, doctors either hadn't discovered it yet or would never connect it to what I was experiencing. I was therefore weirdly vindicated by receiving a Long COVID diagnosis, complete with a positive PCR test from an emergency room visit.

Despite the fact that Long COVID dramatically worsened my health and functionality, now I spend most of my time in bed due to fatigue and rarely leave my apartment except for doctor's appointments. I also suffer from daily headaches and migraines multiple times a week. Yet I felt gratified by the fact that I felt that I could now call myself disabled without hesitation, though, I can now look back and realize that I was disabled for most of my adult life.

Without a clear diagnosis, I felt fraudulent adopting the term. At the same time, I had no expectation that the doctors I saw would have anything helpful to say to me. And as I predicted in the past two and a half years, I have received almost no helpful advice or treatment. Instead, I have been assured that my fatigue would resolve, something no one versed in ME/CFS would claim, been told to exercise by more doctors than I can count, ditto and encountered many, many nurses and technicians who did not even know what Long COVID was.

On one memorable occasion, I had to repeatedly reassure a radiologist that I was not contagious. On another, a doctor administering a stress test asked me about my exercise regimen and seemed confused when I explained that I had none. A subsequent doctor administering a medically induced stress test for a patient when I struggled to kick during the procedure.

Why? He asked, irritated when I told him I couldn't go on. These experiences were upsetting, but I was not surprised by them. Given my previous experiences as a patient, as an experienced patient and a highly educated person, I am now confident in my own instincts and not as intimidated by doctors as I was in my early 20s when I frequently broke down crying during appointments when my symptoms were not taken seriously,

I now know to disregard advice that doesn't suit me to harangue offices for imaging or other appointments, even when they are unhelpful and in general, not to take the lack of care or consideration I received from so many doctors so personally. Obviously, some of my doctors have been compassionate and diligent, but even those doctors cannot treat Long COVID, an illness for which there are really no meaningful treatments, as we all know, at least not for ME/CFS, which is what has primarily affected me.

All this leads to my greater point, which is that communities of disabled and chronically ill people, like so many of us gathered here today, need to form alternative sources of knowledge to serve as a counterweight to the medical establishment. This is hardly a novel idea, obviously. Countless advocacy groups, forums and websites exist to further this goal. Nevertheless, I think it behooves us to continue to challenge the hierarchical power structure of medicine and how this structure affects our role as patients.

I see a connection here to the hierarchical structure of the Academy, yet another source of knowledge creation that is deeply hierarchical as well as ablest, but can yield productive collaborations and community, like the discussion we're engaged in today. My attitude toward doctors in medicine is somewhat paradoxical, or at least it feels that way to me because I am so unsuited to the sciences.

I would be the first to tell you that I am not equipped to understand all kinds of granular scientific concepts and data, and I certainly do not think our current government's defunding of the NIH and labs across the country is anything other than a tragedy. I need doctors and the medicines they prescribe to function. I was recently reading Carl Elliot's book The Occasional Human Sacrifice, in which he tells stories of serious medical abuses perpetrated by medical researchers and the whistleblowers who work to reveal the truth about these studies.

The picture of academic medicine, i.e., the environment that produces the research that we all hope will one day develop treatments for Long COVID was not encouraging. Many of Elliott's whistleblowers, I quote, had harsh words for the culture of academic medicine more generally the arrogance, the authoritarianism, the rigid status hierarchy, the soulless anti-intellectualism.

As this is not my field, I can't comment further on the specifics of these problems, but I think we can probably all recognize some of the experiences we've had with doctors who are not researchers in this description. We need these researchers to discover treatments and further develop our scientific understanding of diseases. But in the future, I hope to live in a world that treats medicine as less hierarchical,  and cloistered, and instead as a collaboration between doctors and patients.

This hierarchical system, in addition to encouraging bad impulses in academic medicine negatively affects the care patients receive. As Alan Bleakley has written, where medicine remains structurally undemocratic dysfunctional hierarchies and autocracies will persist in clinical teamwork and paternalism will prevail in consultations, placing patients at risk by compromising communication essential for effective systems based healthcare. That includes accurate diagnoses and referrals, effective communication between medical teams and between those teams and their patients, he emphasizes, is crucial to positive patient outcomes.

He cites a 2008 study that found that 70 to 80% of healthcare errors are caused by human factors associated with poor team communication and understanding. I'm going to skip a paragraph. I’ve been going on for a long time. As I said, the hierarchical control structures of medicine are mirrored in academia. And indeed, academic medicine fuses those two spheres. Now, I have a master's degree.

I do not work within the Academy, as you can probably tell from the tenor of this paper. So far, I have not been in grad school for several years now. I have, however, worked extensively as a researcher for hire and have used oral history materials in the past while putting together historical research for other people's book projects.

I was excited about participating in Listening for the Long Haul, in part because I have spent so much time in the archive as a student and as an independent worker, both physically and online. I think we can all agree that one oral history project is unlikely to solve the problems of patient knowledge, let alone patient access I've been describing and that have come up throughout the day. Yet a publicly available project like this also offers an alternative to the strict hierarchies of academic knowledge, which privilege Ph.Ds and professors. Excuse me.

And hide most research between highly inaccessible journal paywalls. This work is also inaccessible to most people by virtue of its jargon. As I said, I cannot understand most medical papers. Not all research should be simplified for a mainstream audience. Jargon is sometimes inevitable and useful, but the Academy is not the only way to build or disseminate knowledge. Online resources like this one, which privilege patient experience can serve as a valuable alternative. An alternative that can grow from both within and outside the Academy as this project has no similar resources, need not bear a university stamp of approval.

The project's emphasis on long  form conversations also provides a contrast  to the brief, dehumanizing rush of doctors appointments in our managed care system. These conversations,

which obviously have a different goal from a doctor's appointment but also delve into medical experiences and symptoms, privilege a holistic understanding of each participant's life experience, illness experience, and self-conception as a disabled person. If we use a disability justice framework, we share resources like this project, and the conversation we are having today are a form of interdependence as well as radical and collective access, but perhaps a different form of access than the meaning traditionally associated with that word and disability spaces. This oral history project is a form of community building, as well as a resource for fellow long haulers to learn from each other, as patients and as advocates, and for other people. I hope to learn from us. We need our knowledge and information to be as widely available as possible to people who need it, especially those people who, unlike me, lack years of preparation of fighting with medical authorities when they fall ill. Grassroots knowledge, unlike knowledge sanctioned by medicine, the academy or especially centers of academic medicine, can provide insights, and especially emotional truths those forums are less likely to access. This kind of knowledge sharing is particularly valuable given the power structures authority have in dictating and defining supposed medical reality and disability status.

As Irving Zola wrote in 1972, medicine is becoming the new repository of truth, the place where absolute and often final judgments are made by supposedly morally neutral and objective experts. As we all know, doctors are not morally neutral or objective. Their conclusions are based on their own racial and gender biases, and shaped by the training they receive. But they are endowed with enormous levels of power, including the power to shape the lived realities of the people they treat.

So, unfortunately, is the government, which dictates whether individuals are legally disabled or not. Last week, I received a denial of my appeal for disability benefits. So I speak here from very personal experience, at the moment. And reading sources for this presentation, though, I found myself reflecting on my hesitancy to consider myself disabled in my 20s. For many years, it wouldn't have occurred to me to attach that label to myself, even though I clearly was physically limited by my joint problems. Later, my symptoms were severe enough that I felt I really did qualify.

I hesitated to adopt the label because I did not feel, quote unquote, legitimate. The sense of confusion is particularly relevant to the Long COVID discussion, because so many people struggle to obtain a diagnosis having never officially tested positive or facing so much skepticism from doctors when they try to seek care.

At this time, under the current presidential administration, we do not have the power to change the disability benefits system. Indeed, disabled people and other marginalized groups are increasingly under a legal threat, as I'm sure I don't need to remind you all. It is more essential than ever, therefore, that we form alternative centers of knowledge and resources. It falls to us to combat this hostility, as well as the antipathy toward COVID and Long COVID that has persisted through multiple presidential administrations.

As universities are targeted by the government and consider instituting mask bans. My alma mater, Columbia University, has instituted such a ban, to my immense disappointment. And as medical research is defunded, we find ourselves increasingly on our own. Though I'd really prefer to live in a country with a more supportive government, one that robustly supports medical research as well as the practical lives of disabled people,

the failure of the state to support us doesn't mean that we can't support each other and document our experiences not only for the benefit of our fellow patients, but also for future patients and scholars to understand the experience of Long COVID from a patient perspective, rather than through the eyes of doctors and researchers alone. And that's all I have. Thank you everyone.

40:13 - 40:36

>> Sarah

This is Sarah speaking. Thank you so much, Morgan. I really appreciated your presentation and found myself, taking a lot of notes and being like, oh my goodness, same. And just thinking about, so much in relation to patient advocacy and navigating disability and chronic illness diagnoses. So thank you so much.

Our next panelist is, Dr. Iliana Pagán-Teitelbaum. She is a Puerto Rican educator, writer and filmmaker and artist. She is an associate professor of languages and cultures at West Chester University of Pennsylvania.

40:58 - 41:32

>> Iliana

Hola. I am Dr. Iliana Pagán-Teitelbaum. Pronouns she/ella. I am a light skinned Latinx woman with shoulder length brown hair, brown eyes, glasses and behind me there is a virtual background of books on shelves. Today I will speak and share poetry about pedagogy of exploitation, Long COVID and disability in academia.

As a content and care announcement, my talk contains reference to sensitive topics of faculty illness, disability and death. And there was a question in the Q&A: What is academia by academia? I refer to the university and the people who are producing knowledge and teaching and learning in the university system.

I want to talk today about how educators have developed inclusive pedagogy frameworks to meet an increasing demand for service and care for students in higher education. Research shows that pedagogies committed to equity, inclusion, social justice can improve learning experiences and outcomes and strengthen the educator student bond. Pedagogies of inclusion center care

and educational experience.

They incorporate universal design, are trauma informed, are culturally responsive. They reflect on the grading system. They create non hierarchical relationships, and they practice a pedagogy of non-domination. All of this requires considerable time and labor. And this is where my concern

about pedagogy of exploitation arises.

Universities benefit from the increased enrollment and retention that inclusive pedagogies foster. However, the work required to implement inclusive pedagogies is often not compensated. While faculty, especially faculty with intersectional marginalized identities, invest more and more effort into invisible care work that is time consuming and emotionally taxing, we usually do not have other commitments reduced to ensure a manageable work life balance, and we are not compensated proportionately if at all, for this labor. This creates what I call a pedagogy of exploitation in academia, where faculty are taught to, expected to, and coerced into exploiting our own time and energy for the well-being and advancement of others until we burn out, get sick, become disabled, must leave our job, lose our job, or until we die prematurely. While it may sound extreme, faculty death is not as rare as one may think. I myself have lost three colleagues in the past few years. May they rest in peace and power. All of my colleagues who passed belonged to marginalized identities.

Other colleagues survived but had to leave their dream jobs to survive. Other faculty have become chronically ill and disabled, like myself. Very few disabled and sick faculty are in a position to risk being open about their condition in an ableist institution and society. Most mask or hide their condition so that no one knows how many ill and disabled faculty there are on campus actually.

Caring faculty are susceptible to exploitation precisely because we care about the flourishing of our students. In her 2024 essay on queer exploitation in academia, Lavender McKittrick Schweitzer defines care exploitation as a failure to respect someone's dignity by taking advantage of their vulnerability, which arises from caring about others.

And I will have four of these definitions on my handout that will be in the chat, as well as my poems. Faculty who are invested in the well-being of our students can be impacted by burdened virtues. According to Lisa Tessman in 2005, burdened virtues are virtues that “fail to enable their bearers to flourish,” end the quote.

In this context here, exploitation of burdened values often occurs when professors are called to aid students, where the call to aid is made with the presumption that they will do whatever task, incur whatever risk in order to care for students. Schweitzer poses that invisible care work, quote, “falls most heavily on those who are underrepresented and historically marginalized, especially when serving students that share axes of their identities through care work that is emotionally taxing and time consuming.” End quote.

I will now read a poem titled: "Time for Me" After January, Jill O'Neill and Ben Chojan.

Time for me.

Time for me.

This time for me is not brought to you with the support of the respect of my university job. For the need of female professors to rest, nor by the understanding of my little family that mom needs alone time to recharge energies and spirit. Nor by the concern of community organizations like the School Council of Parents or the Latinx Social Justice Collective for caring for their members to avoid burnout in this society of exhaustion.

Nor by the request that my doctor denied me to take a partial leave of absence to recover from the harm done to my bodymind by five years of workplace harassment. How ironic. This time for me is brought to you with the dangerous patronage of the SARS-CoV-2 virus. So persistent, in its second super contagious strain, world renowned since 2019, belonging to the calamitous clade of the phylogenetic tree of the ferocious family of the Coronaviridae of the genocidal genus betta coronavirus Of the surgent subgenus sabi coronavirus Of the spiny species of the SARS virus or ... by its Spanish acronym. This time for me, brought viciously to my being by way of a disabling stroke of luck that brought me life in the time of disability. Crip time, time in bed space. An ironic time deprived of roles, work, outings. Time of essence, breathing, sleeping, healing for 1036 days and counting. What does this time for me mean now? Power. Pedagogies of exploitation can be obscured by a structurally reinforced myth that educational work is its own reward.

This may make faculty feel like our work does not warrant fair compensation and appreciation. Academic institutions place faculty in a double bind by issuing calls to aid students that undermine faculty, no matter how they respond, according to Sukaina Hirji, an oppressive double bind is a situation when, quote, “a member of an oppressed group is forced to choose between cooperating with and resisting some oppressive norm, and in which whatever the agent does, they end up reinforcing to some degree the oppressive structures in place.” End quote. If faculty respond to a call to aid students, we risk being exploited.

If we don't respond, we go against our own values to work against oppression. We also risk losing credibility and power, being judged and being denied participation in decision making about equity. In stories from the front of the room how higher education faculty of color overcome challenges and thrive in the Academy Michele Harris et al discuss the cultural taxation that faculty of color endure from administration, student demands, and the stress of toxic workplace environments. Cultural taxation is the extra work that faculty of color are expected to do to represent their ethnicity, identity, culture in a university setting, but without proper compensation or recognition. These faculty can also be used by a nonwhite faculty to attract benefits to their department through funding or diversity initiatives, marginalized faculty negotiate the unrealistic expectation that they represent their racial, ethnic, or identity group through, I quote, “above average performance in teaching, research, and service while facing a deficit of credibility due to racism, sexism, and other forms of discrimination” end quote.

To understand the implications of a pedagogy of exploitation, I offer my own experience as a disabled female Puerto Rican faculty member in a humanities department at a public university in Pennsylvania. I am a teacher scholar concerned with issues that black and brown and disabled students face on campus. I am the faculty advisor for the Latino American Student Organization, and I co-founded the Latinx Social Justice Collective, as well as the Racial and Social Justice Research Council on campus.

I am often approached for advice about navigating university life by faculty, staff, and students of color. I have worked as an advocate for equity and shared information on inclusive practices informed by student perspectives at my institution. This work, while necessary and pressing, has largely been invisible. I know from the positive impacts experienced by students that this work is valuable. I also know that it is emotionally exhausting and largely uncompensated.

It made my tenure and promotion process more daunting, and has taken significant time that could be dedicated to research, creative endeavors, personal interests, time with friends and family, and rest. For eight years, I convinced myself of the urgency that I do this uncompensated work at my first tenure track job.

I'd say I fell prey to the myth that my work is its own reward right now, because I felt that students in our non-ideal world required help and solidarity. I wasn't willing to step back and do nothing before an unjust status quo. I felt that inaction would have undermined the well-being of marginalized students.

I felt like I had no choice. For years, I felt pulled in all directions. I felt pressure to produce more research, obtain better teaching evaluations, do more service than my non marginalized peers. And I did it. I did all of that, all the while being harassed by a European male peer for which I fought a DEI case for years on behalf of all the Latinx women that had been harassed by this man of privilege.

A man who faced zero consequences for his actions. At the same time, I wanted to be a dedicated parent to my kids, a good partner to my spouse, a good daughter to my aging parents, one of whom passed away while I was active on a campus strike. By year eight on campus, my immune system started to fail.

When I asked my white doctor to support me for a partial leave of absence due to anxiety, burnout, and a year long fever, whose cause could not be determined, she denied my request. The next month, I got COVID for the first time at the campus social justice retreat, and I became disabled by severe Long COVID. As a Latinx woman in my 40s, I was at higher risk for long SARS-CoV-2. Just as marginalized people were at higher risk of lung SARS-CoV-1 in the years 2002 and 2003. Today, I'm in bed 23 hours a day. I use a wheelchair. I'm unable to perform any household chores or major life activities. I had to take a year of medical leave and I returned to work with partial leave, teaching from bed. I am presenting from bed right now. In spite of my severe disability, H.R. denied my request for ADA accommodations at my institution. Most of my able bodied and able minded white peers have been promoted to full professor.

Sometimes I feel discouraged, like I gave my health and well-being to an institution that is ready to discard me as soon as they have drawn out my last drop of blood. This feeling is compounded by the realization that while I survived other colleagues did not. Under the weight of traumatic losses, I have struggled to understand my value and identity as a newly disabled Latinx woman. I realized that helping my students get educated and attain equity requires that I stay alive. I will end with the poem Flag of Resistance for Disabled comrades across the world, especially those with Long COVID and ME/CFS. I continued to live despite the hurt of it all. The pandemic that never ended, the illness that never healed, the friends that never spoke to me again, the society that never accommodated me, the world that I never saw in person again when I became disabled.

Fine then,

I'll leave it like a tree who, uprooted by

a hurricane wind, keeps

growing as it lays flat on its side,

or like half the

population of my island Puerto Rico

forced off our beloved lands

eternally dreaming of an impossible return

I'll leave it all and embark on a new yearning,

a greening of my soul

a sprouting of my self-love

a flowering of my courage

a wilting of regrets

a nourishing of my roots

a love of my disabled bodymind

Unfurling like a

flag of resistance

in spring

Poem. Thank you.

01:02:11 - 01:02:32

>> Sarah

Thank you so much, Illiana. For sharing all that you shared today. I'm reminded, Audre Lord’s, claim that poetry is not a luxury but a vital part of our existence and our life worlds. So thank you for that.

We're going to take an access break for seven minutes, and then we'll come back to finish up with a panel discussion and Q&A. So come, let me do math, but come back in seven minutes.

All right, everybody. We are going to open it up with, panel discussion. I don't know about you, but there's so much to get into. And so I have a couple of questions, to get us started with the panelists. But for folks online, if you have questions or comments for the panelists, please go ahead and put them in the Q&A chat and we will get to them.

Okay. So, Iliana, Jennie and Morgan, I'm wondering if because I was off. I think all three of you touched on this a bit, but I'm wondering if you could share, maybe dive a little bit deeper on how your relationship or understanding of chronic illness and disability has shifted.

As a professor, researcher, educator as a result of COVID-19, are there ways your practices have shifted, questions changed, or ways of teaching, researching, mentoring that have been transformed? Yeah. I'll open it up to anyone who wants to jump in.

01:04:33 - 01:05:04

>> Iliana

For me, becoming disabled, or newly becoming disabled in my 40s. Something that was the most helpful was getting to know other disabled people and learning about the disability justice movement. Reading about disability justice, and finding value in my being, in my existence, in my being the only human, the only living creature like me that exists in this universe that ever will for millions of years, before and after. I am the only Iliana that has ever existed and will exist. And therefore I have value just because I exist. That is my intrinsic value. And I have learned that from the disability community. I am valuable even when I'm not producing, even when I can't move, even when I can't think, even when I can only be, I'm still valuable.

That's one of the most, transcendental lessons that disability has brought me, and that I'm grateful for in this experience. As difficult as it has been with Long COVID, and it has meant slowing down, working in crip time, which means I can't force my body, I can't force my mind. I can only work in fragments, do a tiny little bit, and I must stop. And I must stop for hours or days or weeks or months and then continue.

And it's really hard to adapt to crip time. It takes a lot of practice and a lot of self-compassion. I'm learning to do self-compassion breaks where I just acknowledge how hard it is to be disabled in an ableist world, and the world that doesn't provide the access and care that I need, and that a lot of people in my community need.

01:06:59 - 01:07:29

>> Morgan

Yeah, I mean, that resonates with me a lot. Obviously our professional situations were and continue to be very different. But I think what you're saying about having to adjust so radically the sort of expectations of what is possible and especially about time, which, Jennie, you were talking about, sort of how we think about time differently, which really struck me in your presentation,

I was someone who I mean, was it always an overachiever in terms of doing really well in school, hence going to get a master's degree and when I got sick, I had like a part time job. I had multiple freelance gigs going on at once. And in order to maintain a lifestyle like that, not that I was making a huge amount of money.

You have to just be working all the time and balancing all these different things simultaneously. And one of the jobs that I had, as I mentioned, was as a freelance researcher, for people who were working on book projects. And so I was they were mostly working on, like criminal justice topics. And then about, like investigating something that was going on currently in the United States.

And then I would provide a sort of huge historical background that would help contextualize their subjects. So that would involve looking at hundreds, if not thousands of primary source documents, primarily through online archives, tons and tons and tons of newspaper articles. Also, you know. Papers, books, You know, all, all theory, whatever.

So it was a range and I did use some oral history stuff, other sorts of recordings and things that you find in archives online. And basically as a result of getting Long COVID, I can no longer do that work. I think I've been less cognitively affected than many people. I can still write and think at a pretty advanced level, I hope, but it takes a lot more time to do those things.

And a lot of the sort of complex thinking that is required to synthesize a lot of information that I think is a lot of what research is and what sort of academics are, is just no longer possible. And I also write fiction, and I used to sort of I would plan something and I would like go into a hole for four months to just write and write and write and write and write until I had sort of a piece of work. And that is completely not I mean, it's absurd to even think about.

So I think a lot of the ways in which we consider ourselves productive or fetishized the idea of productivity and work in general, obviously, but especially I can obviously, speaking for my own experience, especially if you're someone who, prizes intelligence and intellectual work and that that's really where you get a lot of your sort of self-worth from.

And I'm obviously speaking about myself here, the fact that you have to slow down so much of that, and I'm sure this is similar for someone who, like previously, had been a really accomplished athlete and then gets Long COVID and then can no longer run. Right. Like this applies to many different aspects of life. But for me, it was realizing that the one thing I had always been able to count on, even when I was dealing with serious chronic illness, was my brain.

And that I could still sort of push and push and push intellectually, no matter what was going on with me physically. And that's no longer this is no longer possible. So there are certain things I fundamentally cannot do, and that a lot of things that I can do, but it just takes a lot longer. And I think there is a sort of humbling aspect to that that is both very frustrating. But that also can be helpful in terms of understanding that our value is not tied to our ability to produce things.

Right. But it changes the relationship to both work in a literal way. And also the concept of work, I think in a very profound way.

01:11:27 - 01:12:03

>> Jennie

This is Jennie. I'm really struck by getting to hear Iliana and Morgan speak in this context. I've listened to you speak in others. Iliana. I've listened to the Spanish, even though I can't always understand all of it. But that's actually okay. And, Morgan, I've listened to your. I've listened to hours and hours and hours of people talking and I've listened to it asynchronously.

So, you know, part of me was really nervous. I was like, how am I going to listen to all of this? How am I going to do that? And I realized that actually, I can listen to it and in fits and starts, I can listen to it like the commitment I make to myself when I'm listening is that that's all I'm doing. That's how I decided to approach it. And that sometimes means that I can listen for two hours at a stretch, but sometimes it means that I'm listening in 15 minute bursts or, re listening again. If I've missed something. And the point that you just made Morgan, about capitalism is really there is such an incredible connection across these interviews.

About how the relationship among chronic illness, Long COVID, racial capitalism, meaning the sort of connection between white supremacy and capitalism and what those things mean and how they extract from us, which really speaks to Iliana's point about, about care extraction and exploitation. Care is the commodity in that case. And so the themes that are interwoven throughout these interviews, I think, are really quite astounding. And for me, I think as someone who doesn't live with chronic illness but lives with, is married to someone with chronic illness. So my family holds that capacity, holds that, and I am a caregiver. I live in a world where my care is sometimes, not only distributed to my students, but also means that I have to think about how I, how I move in the world to take care of my family.

It has been an attempt to really bend that time, to really think about how I can commit my body mind to doing things and different lengths of time than the length of time that I am told. So I think about Iliana describing teaching a seminar from bed. You know, that's 90 minutes or however long it is.

And part of what has really changed for me in, coming into these intellectual and political and relational connections around Long COVID has been really a being much more honest

about the amount of time things take and how I, what I can control of that and what I can't and how I can remove myself from things and when I can't.

And that has been really I think I saw in the chat people talking about how the brakes really matter for them to be able to stay. And we thought a lot about that. When we were organizing with Kaimara, who you heard from this morning, the curriculum that we all worked on together, but also listening to these interviews and making the decision to put them all together in one,  put them together in one tape, and not in one file.

And you can hear the way time gets stitched into the interviews, right? I need a break. We're coming back from a break, but also, I don't know. I'm. I'm pretty...I'll be interested to hear what other people experience, but when you listen to the long form interviews, and you hear people talking about brain fog, talking about cognitive changes to their bodyminds, but also they are some of the most lucid and, ordered conversations I've ever heard in an oral history.

So there's something also about how we and maybe that's about performing, or maybe it's about actually feeling the experience of being listened to can help us. Having that experience of being heard, of being able to experience that feeling is, to me, part of what happens through a project that combines people living with chronic illness, in this case, Long COVID and associated conditions.

A lot of people with ME/CFS, and the experience of not just speaking, but actually knowing that you're being heard. What that can do. And there are a ton of questions

in the Q&A. So, Sarah, I'll leave it to you. Yeah.

01:17:47 - 01:18:14

>> Sarah

Yes. Thank you for that, Jennie. Yeah, I wanted to turn to the chat. There are several questions and I'll put them in the chat as well. But the one question I think we could begin to riff on is this question from someone anonymous, but they're asking, can anyone speak to the grief that comes with becoming disabled and moving through it, especially in a world that is leaving us all behind?

01:18:30 - 01:18:48

>> Morgan

I mean, I definitely want to hear and I got to answer this too. Illiana and I are really good friends. We're in the same support group. So it was very funny to me when I found out we were both going to be on this panel. Though I learned things today that I had not heard before in your amazing presentation.

So it's been really great. But, I feel like I have an interesting perspective on this because as I was describing, I had been so physically compromised before getting on top of it. I think part of the reason why it wouldn't have occurred to me to describe myself as disabled, the first half of my 20s, was that like, I definitely was having real problems, but there were still tons of things that I could do to live a, you know, a pretty normal life.

By the time I was in my late 20s and especially early 30s up to before, you know, getting Long COVID, I was living a very circumscribed life, like I was dealing with really, really severe chronic pain. My stomach was awful, which it still is. And so I was instead, like, the way my internalized ableism was manifesting was sort of like, do I count? Like, is that okay?

So there was this sense of relief, as I said, to be like, okay, finally, like, I'm official. That said, the adjustment between even the very circumscribed life that I was living leading up before that, and then what happened when I got long, COVID was very traumatic. Because I had never experienced anything like ME/CFS before. Like, I mean, it's so devastating. And in addition to being physically very devastating, the psychological impacts were really profound.

So I was already, again, as I said, completely jaded about the medical system. I had no faith in doctors. I was primed to go into those appointments and not take anything they said seriously. If I thought it sounded stupid, I didn't have any hope when I went in to talk to those people, but because I was just this kind of like, weird freak case.

Not that that's an uncommon thing for women, but I wasn't, like, connected to a wider problem so much. I probably could have been, but it felt like it was more the strange thing that was happening to me. Reading Megan O'Rourke's book actually was really, really helpful because she writes about these sort of weird cases where no one knows what's going on.

And that was before I got Long COVID. But after Long COVID, I think the grief and rage was more to do with society completely disregarding this as a problem. Everybody was just moving on as though nothing is the matter. Sure my friends have been really, really supportive, but most of them also have moved on.

And I don't blame them personally. Like, this is what society has done. But it's really, really difficult, I think, to live in a world where the government just doesn't care about you at all, like actively wishes you ill currently. and you just feel completely invisible. I mean, I talked about this in the oral history. The feeling of absolute sort of nullification, I think, was harder for me than almost anything else about even the physical stuff.

Where about like, I didn't have any grief about, like identifying as disabled, which I think can be very difficult for some people to sort of make that imaginative leap. Like that was fine. It was the total lack of empathy or respect from the wider community, including, I should say, my father, from whom I am now estranged. That's really, really hard when you just aren't taken seriously by people you love, but also by the sort of the world at large. Right?

It's the combination of those two things I think was really, really difficult for me.

01:22:59 - 01:23:39

>> Iliana

I think grief is huge. It's a huge part of the process of getting Long COVID, becoming so ill and something that was really new to me. I had experienced becoming ill and having limitations to my body, but I had never experienced becoming so ill that I had limitations in my mind. And, that thinking could actually hurt, and could make me physically very, very explosively ill, and in terrible pain for hours.

Just for thinking more than five minutes. And I was used to, using my mind really for, all my life,  up to having Long COVID. So for me, the process of dealing with grief, mainly centered on accepting and understanding my new identity as I am now a disabled woman. And what does this mean for me now?

To be a disabled person? Finding other disabled people and community is what saves me. I have tried on three occasions to participate in able bodied community and non-sick communities, and it has been such a struggle. It has been so frustrating and I have been so excluded.

I have had to fight for access with so much energy that it really made me not want to be in those spaces. So I am mostly participating and having community with other sick people, other disabled people. And that has brought me a lot of joy, a lot of love and understanding. I have been able to create art and poetry and writing, with other disabled people in Pillow Writers, in the Writers Guild of America initiative workshops with TD Mitchell.

We kept meeting for years and now have our own group. I have kept writing with the Long COVID community on discord. If anybody is interested in finding that you can and email me, contact me through the links. And you can see in my poetry that I express a lot of grief and, but also a newfound strength and, resistance and a newfound, ability to just know myself and know others for their true essence and value the life and the love that they bring to the world.

01:26:18 - 01:27:44

>> Jennie

I guess I would just say one thing about grief. I think it for me, part of it is also, having access to spaces online has really made a difference in terms of being together. There's a question in the chat about, masking and, what it means to think about creating a space with, people who are still experiencing COVID and really understanding that any under any, any decision to focus on the history of Covid means that we have to think about Long COVID on COVID isn’t over COVID isn’t over AIDS isn’t over and I think being in conversation with people who understand that it's a sort of constant process of transition, as I said at the start of my talk.

My commitment to What Would an HIV Doula Do? Is really, partially that especially online spaces are spaces where people can be in conversation with one another in a way that allows them to do it from bed, that allows them to do it, laying down or sitting up.

Allows them to, be taken care of other parts of their lives or allows them to just turn off the camera and just listen, to rest their brains or to look and not listen. I mean, whatever the case may be, and that is, I think the idea of stop, rest, pace, is useful.

I don't think it's complete. I don't think it does everything, but it is a way to feel, which is part of what I think grieving calls on us to do. And for people who often live a life of a mind, you know, hearing Iliana describe that sense that she could always be in her mind, except for when it hurt her body.

That is, I think the other piece of it is very challenging for academics. You know, we tend to live in our minds and we don't always live in our body minds. And, so grief requires trying to be in your body mind more than in just your mind.

01:29:52 - 01:30:11

>> Sarah

Yeah. I really appreciate this conversation on this question. I think one more that kind of fits the tenor of the discussion is a question I think in response to a lot of the things that all three of you were sharing. But, the question is, any recommendations for building disabled community?

01:30:20- 01:30:51

>> Iliana

I can answer a part of that. And also with another question that was in the Q&A about the impact of COVID on Latino communities. There's so much Long COVID in Latinx communities, but no one knows the term, including our doctors. If we have a doctor, and we are at higher risk but have less access to care, to rest, to treatment and to disabled community.

And that's one of the reasons that this month, in April, I co-founded Pillow Writers in Espanol to create a space for Spanish speakers with Long COVID and me to connect globally. But I think it is really important to build disabled community. I, for example, joined the Thunder and Lightning Collective for disabled, Bipoc and queer poets and what an amazing experience.

Everything is done with so much care, so much access and hearing other artists, what they create just fills my soul so much. So I think it is important to find other disabled people online and start getting to know them very slowly within your capacities. A lot of rest.

But it it will fill your soul. And it's important in order to do that, in order to build a disabled community, you have to see disability as a spectrum, because I think a lot of us had trouble identifying in the beginning is, oh, I'm disabled because we have an archaic image of disability is when you're paralyzed and anything else, you're not disabled. But in fact, there is a range of experiences of chronic illness and disability that don't always have to do with mobility, but they can have to do with mobility.

They impact your body and your mind, and they can fluctuate. Some days I'm able to walk to the bathroom, and some days I'm not. And so there are changes in my abilities on an hour to hour basis. So understanding that diversity of disability can enable people to identify as disabled and get to know other disabled people and find community.

01:33:06 - 01:33:26

>> Morgan

I would add to that, this is Morgan, that there I think you gave two really good examples there. I mean, amongst everything you said. But one is that you are starting something. I could connect it to a thing that already existed, but you saw an opening for something that was really important and wasn't there, and so needed to be there.

But some of the other examples you gave were seeking something out that did already exist and participating in it. And I think especially with I mean, there are already a lot of Long COVID organizations, but this is obviously still something

relatively new.

So it's kind of in flux. But there's almost always somebody out there who's already doing something, right? And the group that Iliana and I are in together was with the what she mentioned was the sort of spin off of the Writers Guild. And now that obviously feels like it has nothing to do with the Writers Guild. Like it's just that we are in that community together.

But we all wound up there because we made the decision when we saw that the Writers Guild was doing this workshop for people with Long COVID, we elected to participate. And doing one writers workshop, maybe you're not going to find the people who you really connect with, but I think putting yourself out there and as much as you have the energy to do, you're going to be able to hopefully interact with people who have different experiences, who you do eventually form that important connection with.

And then there will also definitely be things and spaces that have not been created

yet and do need to be made. But I think a lot of it is also kind of like spontaneous kismet, as long as you're willing to make the effort. Which I feel is what happened to me. I mean, I interviewed an author recently who had written a book about her disability experience, and I feel like now we're like friends.

We had such a great conversation. And that's totally random, right? Like, you just have to be open to things while also putting in that effort. So yeah, and the internet is amazing. I mean, without that, it would be so much harder for any of this to be happening.

01:35:35 - 01:36:04

>> Jennie

I would, this is Jennie. I would add just two quick practical things. All of the organizations that I'm a part of, people think that they're, like, hard to get into, that they're somehow exclusive and in every context, I say just come back a second time. So I think part of what it means to be building that community is, very simply like, come back if you like it the first time, come back another time and build that. Because the only way, I mean, the only way, disability, one of the only ways or

one of the best ways to build disability justice is to build relationships with other people that you want to be in conversation or share space or hear, listen to.

Like, I could listen to that, to Iliana's poetry for a long time. I think I would be happy to come to things where I can hear that. So it is really knowing that there are other people out there and figuring out how you find them as one piece of it, but then the other piece of it is making a commitment to returning to that connection a second, third, fifth, tenth time, and also knowing that it's not always the same people who are going to come back on that tenth time.

And so making a decision about what you need at that moment, but also knowing that this is how community is formed. By people coming back  when they can, how they can, even if it's not the same version of yourself that came the first time coming the tenth time, but you're going to be in that community.

And so that's how we build it in a very practical way, and can make an individual commitment to ourselves that when our bodyminds are able, we go. And when they're not, we don't, and that we try the next time or the time after that.

01:38:11 - 01:38:37

>> Sarah

Yeah. So good. I think right now we have our hard stop at 3:30. So I think we have time for one more question from the chat. Chat is asking, what are the challenges regarding educating the general public about Long COVID and dispelling myths about that. So if any of you want to speak to that, that'd be fantastic.

01:38:51 - 01:39:24

>> Iliana

This is Iliana. I could read some limericks about that. Perhaps I can end on a more humorous note. There once was a woman with COVID, but her bed was a little outmoded. So she took it outside and she bid it goodbye. And then the whole darn thing exploded. There once was a woman with COVID.

It was long and her life was eroded. Her strength was all gone from the body, withdrawn. But inside her heart and spirit revolted. There once was a woman with COVID. Her bed with ten pillows was loaded. When she wanted to write. She turned on the light. Justice, she thought, and she wrote it. There once was a woman with COVID.

She sat by her hearth, so devoted she made a big fire for the COVID deniers and all the bad doctors were roasted Poem.

01:40:16 - 01:40:24

>> Sarah

I love those so much, Iliana. You're inspiring me to pick up my pen and try my hand.

01:40:28 - 01:40:58

>> Morgan

Yeah, I think roasting the doctors is the solution. Trying to think of a serious answer, following up that, I mean, it's really hard, is the answer, especially because the CDC. Like, is anyone left at the CDC? I don't know. Five people, two people and the NIH, same.

I was thinking about this a lot. Less about the general public, but about the healthcare workers, as I was mentioning. Like, I don't think at least in the last year or two, I don't think I encountered any doctors who didn't know what it was, not that they knew anything in like a useful way, but they at least like, knew what I was talking about. So many staff and nurses had no idea. And to me that said like, okay, so the hospitals, clinics, whatever are doing no education at all.

But if the CDC is not like disseminating any information aside from like major, This is the aphasia. Major efforts from patient groups, which obviously we should all be working on to sort of try to force them to be more aware and like, it's really, really difficult.

I think, It's even harder with the general public. I realize this is not a very constructive or optimistic answer, but I don't really have any optimistic thoughts about this. Except that, like, we all basically just have to do our bits, right? To try to make people understand who knows us. And then again, collaborate on hopefully some wider projects. But I think a lot of what the difficulty is that people do not want to know. Like I know many highly educated people who read the news all the time, who just don't want to have to think about this. And, I certainly think if people had more, easy access to things like masks and tests that would be really helpful. I think pushing, the idea of masking as something that you don't have to do all the time, but like, you should really wear a mask when you go to the doctor's office, or maybe the grocery store or in the subway if you live in New York or wherever, as opposed to I think so many people have this sort of like, What? Am I supposed to mask every day for the rest of my life forever?

Oh my God, I'm not going to do that and throw it all away now. And that's, you know, I mean, I kind of wish everybody did wear a mask all the time, everywhere. But that's clearly not going to happen. But I think a lot of it just comes down to like conversations that you can have with people who are perhaps open to hearing things, which, again, is like doing like one tiny piece of sand after the other. But it’s really challenging when the government is really hostile. I mean, even in New York, like they're trying to pass a mask ban.

So, yeah, I don't know if anyone else has a better idea. I'd love to hear it. But, I think it's tough.

01:44:13 - 01:45:05

>> Jennie

This is Jennie, Well, I would encourage people to listen to any of these interviews that are here on the Listening for the Long Haul website, either in long form or in the excerpts, where you can listen to people talking, about a theme, so you can hear 15 people on a theme. And I would encourage anyone living with chronic illness, Long COVID associated conditions, disability, disabled people to be your own historian and record your story, in whatever form it comes. And, you know, maybe it's in Limerick, maybe some of us are gifted enough to do it in Limerick.

Maybe some of us have to do it on a phone. Maybe some of us are better typers and will type it out and not to edit yourself while you're doing it, but just to try and do it in whatever process you need. Whether it's looking at someone you care about and having them ask you questions and recording the answer, or whether it's being by yourself in a room and talking about it, whether it's, you know, being alone at your computer to type or in whatever form prose or poetry that you do it.

And then because I think that that act is one of the ways that we are going to leave the historical trace that we need, for this. We are all living in pandemic times. We all have been living in pandemic times since before this thing called SARS-CoV-2. We have been living in syndemic times, that time where pandemics are running together simultaneously. So we all have that important narrative data.

However, whatever you want to call it, it's inside of us, and we can share it out with the world.

01:46:41 - 01:47:12

>> Sarah

Thank you, Jennie. That was a beautiful and succinct way to formally wrap up this panel. I love, ending on the note of us all being our own historians, all having ways and gifts and talents and strategies for how we can all, you know, as disability justice activist Mia Mingus calls us to leave evidence. It can happen in so many formats and ways.

Jacquie and I want to thank everyone  for their support and energy today. We felt it in the chat. The questions asked and then just the number of folks who were here for the event or who are going to, receive this asynchronously. I think it just, as we were planning, reminded us of how important these conversations are.

These spaces are To keep the momentum going even in the midst of moves to erase, silence these stories and narratives. So, yeah, like, we're living in precarious times, but we hope wherever you were zooming from, you felt connected, seen and encouraged to move, past isolation and towards community.

There are some questions we didn't get we couldn't get to, but we are working on a strategy to respond to them after this event. And getting you all the links that were shared, in the first session and the second. But again, we want to thank, Illinois Humanities and AAPD, for sponsoring the event and for everyone at UIC and Strategies for High Impact, Long COVID Justice for supporting us along with Pro-Bono ESL and Ennis Captioning for providing us access. Yeah. Thank you guys so much. I am so filled with joy and gratitude and I hope everyone can get some rest after this and stop rest, peace. Thank you.