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What now, what next? Webinar transcript + bios
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Oni Blackstock, MD, MHS is a nationally recognized thought leader in health equity and HIV. A primary care and HIV physician and researcher, Dr. Blackstock is the founder and Executive Director of Health Justice, a social impact consulting firm dedicated to helping healthcare and public health organizations center anti-racism and equity while they work to reduce health inequities. She also led the NYC Health Department’s HIV epidemic response and conducted research on HIV prevention and treatment for disproportionately impacted communities at Montefiore/Albert Einstein College of Medicine. Dr. Blackstock is passionate about ensuring marginalized and minoritized communities have access to the resources and support needed to achieve optimal health and well-being. www.healthjustice.co
Dean Spade has been working to build queer and trans liberation based in racial and economic justice for the past two decades. He’s the author of Normal Life: Administrative Violence, Critical Trans Politics, and the Limits of Law, and Mutual Aid: Building Solidarity During This Crisis (and the Next) and the director of the documentary “Pinkwashing Exposed: Seattle Fights Back!” His latest book, Love in a Fucked Up World: How to Build Relationships, Hook Up and Raise Hell Together, is new from Algonquin Press. www.deanspade.net
Leah Lakshmi Piepzna-Samarasinha (they/she) is an older cousin, regular person, memory worker, disability and transformative justice old bytch, and the author or co-editor of ten books, including The Future Is Disabled (co-edited with Ejeris Dixon), Beyond Survival: Strategies and Stories from the Transformative Justice Movement, Care Work: Dreaming Disability Justice, Tonguebreaker and Dirty River. A Disability Futures Fellow, Lambda and Jeanne Córdova Award winner, five-time Publishing Triangle shortlister and longtime disabled QTBIPOC space maker, they are currently building Living Altars, a cultural space by and for disabled QTBIPOC writers. They are a new Philly resident after being a longtime visiting cousin. www.brownstargirl.org
Gabriel San Emeterio, LMSW (they/elle/she/he) is a Senior Fellow with Long COVID Justice / S4HI. They are a queer and disabled activist from Mexico City who migrated to New York City in the late 90’s. Gabriel holds a Masters degree in Social Work with Community Organizing as a method of practice and a certificate in Social Policy from the Silberman School of Social Work at Hunter College, where she is now part time faculty. They are also honored to be a member of the HIV Caucus (aka U.S. People Living with HIV Caucus). Gabriel’s life experience as a person living with HIV, Myalgic Encephalomyelitis (ME/CFS), and other complex chronic conditions, fuels their passion for disability justice and liberatory community work.
Emi Kane is the director of Long COVID Justice / Strategies for High Impact. She is a disabled and chronically ill educator, researcher and organizer. Emi spent many years working for a large university and a small foundation on health and migration, reparations and redistributive justice, and how people think and learn. She is also a former National Collective member for INCITE, a feminist of color anti-violence network, a co-founder of Survived and Punished, and a former but forever proud member of the Allied Media Projects board of directors. Above all, she thinks that relationships of trust are the most important political tools we have, and tries to live and work in ways that reflect that belief. www.possiblesubject.com
>> PATRI: Saludos. Hello.
Voy hacer este anuncio en español e inglés de forma consecutiva y luego comenzaremos la interpretación simultánea en esos idiomas .
I will do this short announcement in Spanish and English consecutively. And then we will start the simultaneous interpretation in those languages.
Acá en la pantalla pueden ver unas instrucciones de como acceder la interpretación en español.
El evento de esta noche cuenta con interpretación simultánea. El evento será mayormente en inglés con interpretación simultánea en español.
Para escuchar plenamente en español con interpretación pueden acceder al canal que se indica de tal manera en español. En la parte inferior de la pantalla van a ver un icono de un globo terráqueo que dice “interpretación” y ahí les va a salir un menú con la opción de escuchar el audio original en inglés o español.
Si desean escuchar o participar en español, pueden escoger español.
Si estan en un teléfono inteligente “smartphone” o tableta, el menú de interpretación para los canales les va a pedir un paso adicional: y es que le den al botón de finalizar o “done” que aparece en la parte superior la pantalla.
Ahora voy a hacer estas instrucciones en inglés y luego comenzaremos con el evento y la interpretación simultánea.
Hello, everybody. The event today will be mainly in English. There will be simultaneous interpretation in Spanish happening at the same time.
However, some of the speakers, or some of the people that may ask questions, do speak Spanish and may want to express themselves in that way. So we will interpret the other way if that happens.
So if you are not fully bilingual in those two languages, we kindly ask that you choose the English channel, in case that does happen or a question gets asked in that language, you're able to listen to the simultaneous interpretation from Spanish to English. And this applies to everybody, including the access team. So in case that happens, you can also continue to provide your interpretation or the captioning as well.
If there are… I'm checking the chat and it doesn't seem there's questions, the instructions have also been shared that way.
And, we can start the interpretation now, as well as the event.
Entonces no veo que hay preguntas sobre esto en el chat, así que podemos comenzar con la interpretación así como con el evento.
Gracias.
>> EMI: Thank you so much to all of our interpreters and coordinators, and to Trans Equity for everything you've done to help make this happen. Hi, everyone.
I'm Emi. I am the co-director of Long COVID Justice, along with JD Davids. I'm a light tan-skinned femme with long dark hair and bangs. I'm wearing a black sweatshirt and I have a thin gold necklace which is inside my sweatshirt right now. And there's a bookshelf behind me.
So we're really excited for this conversation. This is a chance for us to bridge different spheres of struggle, discuss what faces us in 2025, around Long COVID, COVID-19, disability and health justice, and to think and vision together about what we need to do as a community going forward.
We have some pretty amazing people in the conversation. I'm just really looking forward to it. I want to go over the agenda briefly for people who need that kind of information or framing before an event.
We're going to have a quick intro, a little bit of framing for the conversation. We will have a reading from Leah Lakshmi Piepzna-Samarasinha, followed by each of the other speakers answering a couple of questions. We will then have an open Q&A, but feel free to drop questions in the chat as the conversations happen. We have a couple people moderating who will try to track all those questions and take a look at them. And try to answer as many as we can after the speakers are done. Q&A will begin at approximately 7.30 p.m. Eastern Time. I know we got started a little bit late.
And I think Voula is going to drop bios of the speakers in the chat. And we're going to just get started with Leah Lakshmi Piepzna-Samarasinha, who is going to speak a little bit to this moment and read a few poems.
>> LEAH: …Australia, I've got some really beautiful rainbow galaxy lights behind me, big hoops, brown and gray and purple curly hair. And I got asked to talk to you about how the fuck we're going to survive this shit that we are in and read you some poetry.
So I'm going to just try and hit you with some stuff off the top. First of all, when I woke up the day after the election, and three friends had texted me “sending love.” And I was like, okay, here we go. It's not a great outcome.
One of the first things I thought was ‘no more illusions,’ and I really still feel that way. I think that we've been coming to a place for a long time where it's just like nut up or shut up, like let’s do this — like either we really believe in all the shit that we say we believe in and we try and create systems that work and that are not the things that are killing us or we don't.
And obviously it's more complicated than that, but I just want to say - I think it's really a time to own our gifts and do the stuff that we really believe in. And just really throw down with it and not, I mean — whatever, I know that forever we've been saying the systems aren't going to save us, blah, blah, blah. And I just think there's a real spiritual crossroads we’re in, we're just like, yeah, it's that time. Like it's really time to do the stuff that you fantasize about or that you said you would do someday.
I don't know. I got really, I was really sick of a lot of the hot takes right after the election that was just like: we're going to continue to fight, we've survived before. And I want to say that that's real. And I think unless you get real specific about how we have survived before as trans people, as queer people, as disabled folks, as poor folks, as what have you - it's not enough.
So for example, I want to say, you know, if you give a shit about people being able to abort ourselves. Check it out. You could go to PlanC — either .org or .com — and you can look up for every state and territory in the United States. [Editor’s note: www.plancpills.org] There's a list of places to get abortion pills, either a hundred bucks with a consult or, wow, guess what? You can order them for $25 from pharmacies in India.
Or there's some groups that will make sure that people in red states get those pills no matter what. If you look up Four Thieves Collective abortion pill video, it will lead you to a link that talks about, hey, guess what? One of the two components in an abortion pill protocol is actually used by vets to deal with stomach upset in horses. So if you can access that or if you can access what it's also used for, which is for arthritis, you can dose out and make your own pills.
I think, talk to other folks who are disabled people who have been stockpiling our meds, stockpiling medical knowledge for a really long time.
I think that if there's medical providers of conscience out there, it's really time to break some laws again, which again I know people have been talking about for forever. But figure out how to get people their meds, their prescriptions, their treatments, their MRIs that they need, that we need.
I will say that right after the election, I felt really clear and not in some sort of like skipping through the daisies, everything fine way, everything is fine way, but just like - yeah, it's that time to really do what we're supposed to do.
And one thing that might seem kind of grim, and it is, is that, you know, we've all lost a lot of people, some of us more than most. And I think we all really have a sense of ‘this life isn't promised and you don't know how long you have.’ So you might as well do the shit that you really are going to regret not doing.
And, you know, take your risk safely, like figure out what you can do without hurting yourself but like, you know, do the thing that is going to make your spirit proud in the next life, right?
And if you don't know how to do that yet, figure it out and figure out who can help you get there.
I got asked what I would personally be doing in the next year, four years, whatever. And I want to say that I'm going to be doing a lot of stuff that I'm not necessarily going to be speaking of super publicly or on social media, but what I can say is that I am committed to using my skills, my abilities, my relationships to work with other folks to get people what they need, whether it's masks or eSIMs, access to health care, or just being together so we don't lose our shit or being together when we do lose our shit.
I'm really committed to finding joy in that and grounding in that, and I want to also say like especially with all the people that we have lost, it's really easy to pedestalize folks who are gone and to be like, ‘I'm just a schmuck. What can I do? I don't know how, you know, whatever. I'm not an expert.’
And I want to say that like every person I've loved who's died in the past while was a complicated human being who did not know what they were doing and would not want to be pedestalized.
And I want to really lift up that as disabled folks we really, really have shit to contribute. I really mean that. It is not a talking point.
You know, sick, zero spoons, negative spoons, crazy as fuck, disabled, deaf, newer weird people. We have shit to contribute. And I don't mean in that like, ‘oh my God, those people have things they're doing too. They're doing their bit, how nice’ way. But that we can contribute that abled and normal and hearing folks could not come up with on the best day of their lives.
And after Stacey Park Milbern died, me and her friend Max Airborne were texting each other, just devastated. And I was like, ‘what the fuck do we do now?’ And one of us eventually said, ‘own our gifts.’ And I just really want us as disabled, sad, sick, crazy, deaf folks to own that the shit we do is real.
When I talk about activism, I'm not always talking about like the fucking marathon. I'm talking about in the weeks after the election, friends came over and just sat on my porch and were like, I'm checking in and brought food.
Or one of my friends started spinning, brought his DJ equipment and started spinning in the park. Or a bunch of my other friends talked about being Long and post-COVID and what we were actually dealing with and like broke through to some vulnerable realness and all of that shit is real.
I always say disability justice means doing something. And I don't mean the 18-meeting-a-week marathon. I mean, like figure out that shit that only you can figure out and contribute it. And whether or not the abled Left keeps forgetting about us, we're going to keep saving ourselves. And we already are. I was really depressed two years ago, what it felt like and it was that the abled Left had really abandon us and was like, ‘fuck masking, fuck all of that.’
And I've got to say, not that shit's gone — but in looking at Palestine solidarity activism, in looking at different movement spaces over the last year, like everything from Black Star to Witches and Warriors, which is a BIPOC activist and artist residency I was part of, that are like, you know what the government has abandoned us. No one is coming to save us. Let's mask up. Let's test every day. Let's run those air purifiers. Let's do that nose spray.
It has been really — to just, small groups of people who are like, ‘hell yeah, I'm going to throw an all-masked rager dance party,’ you know. It's given me a lot of hope and I want to just keep doing that. I don't believe in utopia or the revolution, but I believe in survival and I believe the shit that we do that's helping each other stay alive matters.
And okay, I'm trying to keep this to 10 minutes and I've got two left, but I will just really quickly say, I know that for me, I've been really feeling my feral 21 year old runaway self in me. And I'm remembering that one of the specific ways that I survived before a lot of legislation or rights or whatever was being a feral 21 year old who ran away and didn't have a phone and organized analog and, like, talked to people in coffee shops and was part of a crazy people's movement that was 95% offline.
And maybe some people have never experienced that feral runaway self. Maybe some people have never experienced the analog. But a lot of us have. So I think let's reach back to bulletin boards and meetups in the park in our backyards and zines and flyers we put up to have workshops and shit of that nature.
And really knowing that — I'm not saying that we have to abandon social media — but like these systems that we really hack to reach each other are increasingly just spying on us and stealing from us and we can't trust it. And we got to figure out our plan B.
And I guess it's a disability justice thing to be that sick, feral, really sad, really -5,000,000 spoons 21-year-old that's in me, is still in me, and is one of my greatest strengths.
So now for some poetry. Yeah. This is a nice segue. This is a poem called My People.
My people are the fuck-ups
the runaways, the ones who waited to tell their parents til they were over 21 so they couldn't be committed as easily
The ones whose therapy is backpacks and shoplifting and silence,
The ones who grow as much of our own food in our backyards as we can as a survival mechanism
not a fun green hobby.
the ones who whisper in our heads, I will beat you with a pipe
I am feral as fuck.
And even though for right now I am somehow an unexpected sort of success
I still don't know how to adult or tame.
I'm always this close to walking away into the woods
with everything I own in a ripped up white plastic bag.
Okay, this is called Psych Survivors Know
Psych survivors know
Whisper to you freezing on a cot in ICE camp right now
Evade capture
Run away
Find a corner.
There always is one, even if it's only in your brain.
You're still human no matter how much they treat you otherwise.
Maybe you become other than human because of what you endure.
That doesn't make you less.
There is dignity in feral.
I wish we didn't have to keep whispering, enduring, playing dead, but be invisible, disassociate,
go into the neurodivergent deep black star silence,
suck dick for a phone.
Organize in ways they're never going to know how to see,
bank on their incompetence, their petty squabbles over jurisdiction,
them distracted by the porn on their phone,
find each other again.
Disappear into the sky memory, dream as long as you need to.
There will be an after.
Survive for it.
How We Made It.
(Next poem)
We didn't make it.
We didn't break down your door.
Your mom flew north from LA.
We set up an altar by your ICU bed.
Satell asked the nurse to put a rebozo on your chest.
You, who stole me a giant bottle of Costco bourbon for Christmas 2020, slipped it in the ass of your power chair.
Nobody wants to look in the ass of a fat man in a wheelchair, kid. Happy solstice!
I poured out most of it that year,
So many prayers and I sipped the rest.
We were terrified. We did not know how to do this.
I watched 14 seasons of ER so I could live in a fantasy world for a minute where poor people are loved by doctors and treated well.
We organized your funeral in three days.
We cried afterwards.
You sent me one of her shawls.
I asked you for the Pusheen mug I sent her for Christmas.
It arrived here in three days.
I planted onions and green seeds and watered them and moved them to sunlight.
We had boxes of meat and cabbages given out for free at Estelita's Library.
We had boxes of masks and lentils outside the state.
The three of us sat in the abandoned, taped-off playground and ate them.
I cried when I went back to the grocery store after nine months.
I cried when I went to the library with two N95s on.
I walked the same damn 10 to 15 minute walk as many days as I remembered, looked around, pulled my mask off and primal screamed out my chest.
I sent you groceries.
You sent me a nine layer gluten-free Southern pound cake when she died.
We texted, touched fingers across the screen.
You took over the radio station.
We kept each other from dying.
We spoke for the dead.
We spoke for all of those we couldn't keep. They spoke through us.
You died. We thought we had more time.
We organized your memorial in three days.
This is the last one. This is Thursday, November 23rd, 2023.
In the thick dust of death in a dry mouth.
In 78 tons of buried bone.
In a curl of children in one incubator, eyes naked, accusing, and alive.
In that angel gay face starting the morning Instagram every day,
Hello, I'm still alive
In the friend who can't look at the meat in the supermarket anymore because it reminds them of body parts,
Once child held by father.
In this place where all the bullshit falls away calls,
What will you do, what will you do?
Thank you. I will see you somewhere. Stay alive, please.
>> EMI: Thank you so much to Leah, who sent their thoughts all the way from another hemisphere.
Next, we're going to hear from Dean Spade, who is going to be joining us asynchronously, so he recorded his videos ahead of time. There was a scheduling conflict. Then we’ll hear from Oni Blackstock and Gabriel San Emeterio, who will be answering our first question.
Dean Spade — I'll give a little bio and then Voula, you can drop the longer bio in the chat if you don't mind.
Dean Spade has been working to build queer and trans liberation based in racial and economic justice for the past two decades. He is the author of a ton of books, a documentary, and more. And Voula will drop the full bio in.
In this video, he is seen as a white person with short hair and a mustache wearing a purple t-shirt and white wired headphones, and there are plants and paintings behind him.
So the first question we asked — we're asking all the panelists to answer — is pretty broad but just: how do we understand this moment with an intersectional or cross-movement lens around COVID, Long COVID and disability justice?
And so we're going to hear from Dean Spade.
>> MATEO: That is not what I meant to do. Give me one second.
>> EMI: No problem.
And we'll have Dr. Oni Blackstock immediately following that, answering the same question.
Remember to please add your questions in the chat. We'll be collecting them. We'll try to answer as many of them as we can during the Q&A.
Yes, and I'm seeing the chat. We're going to have, we're going to send out links and a recording to everyone who registered so..
You ready, Mateo?
For some reason, it's not…loading and I'm not… totally sure why.
Okay. So I'm going to try to reload it. Sorry, y'all.
>> EMI: Sounds good. We could also start with Dr. Blackstock if you're up for it, Oni.
>> ONI: Sure.
>> EMI: Yeah, so we can..Yeah, let Mateo work.
>> ONI: Okay, great.
>> ONI: Okay. Okay. Greetings, everyone. I'm Oni Blackstock. I'm a primary care and HIV doctor and also founder and executive director of Health Justice, a health equity consulting firm.
So I'm a brown-skinned black woman with shoulder length hair, faux locks with a burgundy shirt on. I have a white background, and I'm sitting on a brown leather couch.
And so I'm coming to this discussion as a Black queer woman, again, who is a healthcare provider, a supporter of the Long COVID community. Because of my work in racial justice, in particular, I understand that this moment is a moment we've seen before, where some of the variables may be different, but this idea of like progress with backlash, with progress with backlash, is not new — and there is, I think, hope in it that it means we have the tools and strategies to organize and mobilize.
So just given my experience and expertise, I'm going to — Oh, I think I hear someone talking. Can you all hear me okay? Okay. Can people hear me okay? Okay, I just hear some others speaking. Okay. Okay, thank you.
Okay, great. So what I'm going to do is just share some parallels to the HIV activist movement and some data points on the intersection of race or racism and Long COVID in particular.
So like the Long COVID movement, HIV activism has really been rooted in self-empowerment, which more formally started with what many of you may know as the Denver Principles that were created in 1983 and that were in large part influenced by the civil rights, the feminist and disability movements of the 60s and 70s. And these principles really outline the rights and responsibilities for people who live with HIV, provided recommendations for their healthcare providers, family, and friends.
Like HIV, COVID has disproportionately impacted marginalized groups, in particular black and brown, disabled, queer and trans people. Like HIV, COVID, and Long COVID, we see a government response that was, it was and continues to be, one of inaction, neglect, and denialism.
And like the early HIV epidemic, we've seen people with and affected by Long COVID really mobilized to create their own response, realizing that these systems of healthcare that exist are insufficient and that we must, in order to move forward, create our own structures and our own communities — whether it's compiling sort of people's experiences with certain Long COVID healthcare providers that they recommend, learning about which treatments are working well and which aren't.
Also from the HIV movement, we've learned about mutual aid and peer-to-peer support where we saw queer and trans communities provide direct caregiving to people who've been isolated due to HIV stigma. And now we have members of our community who were isolated because of Long COVID and being marginalized by ableist policies that have removed all mitigation measures that could protect us, including wearing masks in healthcare settings. And I have to say, as a healthcare provider, I am absolutely —
Okay, yes, I will talk slower. Thank you.
I'm absolutely appalled that we are at the point where we are fighting to get masks back in healthcare settings. Just flagging that there was a, I think a study out of UCLA, I believe it was UCLA, they reinstituted masks for providers and saw a decrease in sort of hospital-acquired COVID infection. So this seems like, I can't believe we're fighting for this, but this is where we are.
We know that about 5-30% of people who get COVID will sort of proceed to Long COVID. But we know this is likely higher for people who are multiply marginalized, because we know that certain communities were more at risk for greater exposures, greater intensities of exposure. So if there are people around them without masks on, they're getting a higher viral load, and that because of various workforce and employment policies, many people were unable to protect themselves.
There's also some data suggesting that Long COVID is disproportionately impacting Black and Latinx Americans in particular. And we know also just from the experiences of - okay, so I see Ben's saying 50% of people with Long COVID will develop ME. Yes. Yes. Thank you for these really important data points.
I also want to say that we know that Black and Latinx and Asian and women and disabled and queer and trans people have often, when they go to seek care, have experienced discrimination, often have not been sort of heard or believed. And we know that this is further compounded by sort of the healthcare system, sort of lack of understanding of Long COVID.
So we're seeing that many different groups are having to navigate these conditions, these symptoms without a diagnosis. And I remember Chimére Smith saying, you know, when she went to the healthcare providers with her symptoms that nobody wanted to listen to her and how extremely frustrating that was.
I also want to say that, you know, because of inequities that exist between groups and income and wealth and access to care and health insurance, this really worsens potential access to Long COVID providers. You have to really have resources, funding, and time to seek out healthcare providers who know what they're doing, to have time to identify these people. And the more marginalized folks are, the harder it is to find these providers.
I was also learning about — Long COVID clinics are kind of filtering out or screening out people. Some, for instance, require antibody tests to sort of prove a Long COVID diagnosis. Meanwhile, that's not a routine — you know, we had rapid antigen and PCR tests that were done. But many people don't have antibody tests unless they have like access and resources to have one. So if you don't have that, it's much harder to see, to find a Long COVID specialist for many people.
And we also know that Long COVID has made it impossible for many people to be able to work, to be able to support themselves, and folks who are already vulnerable are, you know, falling into poverty.
I also just wanted to flag that the likelihood of being diagnosed with Long COVID also varies based on race and gender. So you all may be familiar with the NIH, which has this large RECOVER — Researching COVID to Enhance Recovery initiative — RECOVER. And in one study, they found that the majority of patients from a sample of 30,000 patients with Long COVID were white, non-Latina, female and likely to live in affluent areas.
But we know that COVID-19 disproportionately affected people from racially minoritized groups. And so what this finding really means is that people from these groups are living with Long COVID, but without a formal diagnosis. So just wanting us to flag that it is people with resources who are able to, you know — I guess the data really shows us that who is believed by a provider, who can doctor shop, who is taken seriously, who has the language to describe their symptoms to a health professional, that all plays a role.
Even one study in which patients, participants were non-English language speakers, many were unfamiliar with the diagnosis of Long COVID here in the United States, despite experiencing symptoms of Long COVID, despite Long COVID impacting their financial and housing stability and their physical and mental health. So we know that —
>> VOULA: Quick interruption, 30-second warning.
>> ONI: Okay, great. Thank you.
So we know that the work that's happening – research – it's needed. It's really important just from a healthcare perspective. But the reality is that in many of these studies, the groups — Black, Latino, indigenous, rural, LGBTQ, and disability communities — are underrepresented. So what I wanted to just say is just, again, have us be aware of these issues that are happening. We're learning lots of really interesting information.
In the next part when they ask us what our calls to action are, I will say what I think they are. But just to say, we even know that individuals with comorbid conditions such as HIV are more likely to have Long COVID and that obviously this is a virus that can persist for years. So just to say we are here. This is a challenging time.
We are learning more about Long COVID. We know that it has these inequities in terms of impact on different groups. But just to say that, again, with any progress, there's backlash, and we have the tools to mobilize and organize for change. And I hope to mention some of those in the next question. Thank you.
>> EMI: Thank you so much, Oni. I think we have Dean ready to go. Mateo, is that true?
>> MATEO: So what we're going to do is: I'm going to share the screen where you'll see the transcript while it's showing, as opposed to the full screen, because I couldn't figure it out and folks have asked for the combination.
So here we are. Technology. What are we going to do?
>> EMI: We're hearing from Dean Spade now.
>> DEAN: … in the panel, I'm so sad I can't be there synchronously, but I hope.
>> MATEO: Oh, did that accidentally stop it? Here we go. Let me stop sharing and reshare.
Is it working for you all or no?
>> EMI: It was for a second.
>> MATEO: Okay, let me reload the screen. Sorry, y'all.
>> EMI: No worries. We ran through all this, everyone. We had an hour of tech check before this, but things are always unpredictable on Zoom. Yeah, Mateo, let me know if you want me to move on to Gabriel. Happy to do that.
>> DEAN: All right. Thank you so much for including me in the panel. I'm so sad I can't be there synchronously, but I hope these remarks are a useful contribution to the conversation.
The first question I was asked to answer is about how to understand this moment. And one thing I'm thinking about a lot is that I think we're worse off than we were in 2016 when Trump was last elected. One obvious reason for that is we are living with COVID and we have been for years and, you know, more people are chronically ill, and there's massive denial of the ongoing pandemic and of people's illnesses, and that's part of the broader pattern of our society of ignoring chronic illness and refusing to treat it and refusing to to support people experiencing it and creating a work world in which that is impossible.
And, you know, I think that the way that COVID has been dealt with has really ramped up eugenics thinking generally. There's like a widespread acceptance of the idea that weak people, old people, people with illnesses should die and that people with disabilities should die, like that logic just ramped up so severely both in the initial period of COVID and with the denial of COVID and the denial of masking and of any sort of approach to reduce people's vulnerability and make sure that people can go in public and get what they need without being exposed.
This is meaningful on so many levels, but one part of it is that, with Trump coming into office, a lot more people are going to become uninsured. Lots of people are going to lose their jobs because of the new trade policies. There's a tax on nonprofits. A lot of people will lose those jobs. Rent and food are more expensive than they've ever been, I think, anywhere on earth they're really high, broadly, all over.
For that reason, a lot of people are living outside and not having the basic things they need. We're living in a period of increasing the criminalization of poverty and disability. So obviously that's not new, but like where I live in Seattle, there are new anti-drug laws and a renewed drug war that's really focused on a panic around unhoused people and people with disabilities being in public, there's new sex work free zones and other things that are designed to increase the criminalization of poverty.
And I think that's all likely to get more, you know, get much worse in the coming period. And Trump's people are all just a lot more prepared to bring in their agenda than they were the last time he was elected. Last time he was elected, they went really fast too. But now they're even more prepared to steamroll through Project 2025.
And, I heard someone say recently and I think it’s a useful point — really, it's a mass movement around him. It's not just about him. Someone actually said, it’s not, it doesn't rely on him the way that fascism relied on Hitler. And that is really scary.
I think also about how intensely the targeting of trans people has come to the fore and become important symbolic terrain for the right. It's frustrating to see that liberal inclusion efforts like legal reforms often generate this kind of backlash, but they don't actually work, even when we get them. And they kind of — similarly, the idea of inclusion through visibility produces this backlash, but it doesn't actually benefit people who are the worst off.
And so the people who are worse off certainly experience the backlash. So it's just a frustrating dynamic of the mainstreaming of hated groups, the idea that we get kind of trotted out as symbols of progress and freedom, but we don't actually get anything out of it. And then we experience the backlash.
And it's also a really hard period because there's emboldened vigilante violence – I think that that's already happening and will get worse. To me, this is a time to drastically change what we have faith and hope in. It should be the death knell of liberalism and the Democrats who are imperialist and genocidal and who build and expand prison and immigration enforcement infrastructures, who don't defend reproductive freedom or trans people or workers.
They actually are far on the right, and they have this small patina of multiculturalism, and they wrap rainbow flags around their cop cars and their tanks, but it's so clear what they are and that they have nothing to offer most people, you know, unless you’re extremely wealthy, or fascist.
Liberalism ultimately is about the hope that we can fix these existing institutions, and that we should further invest in the US project and it'll eventually get us what we need. It'll finally care for all those people who it has targeted. And that fantasy is something — I'm just wondering, can we just stop having that fantasy? Can we let go of that kind of hope?
Especially with Trump in office, et cetera, but generally because we can see what the Democrats have been offering and what liberalism has been offering: that kind of fantasy of like, ‘maybe next time in the next election or maybe here in my local elections, maybe somewhere we'll take over the government and make it good and make it care for us.’
It demobilizes us because we're waiting for elites to solve our problems. It disempowers us. We don't take action because the action is all happening somewhere else and all we can do is passively observe. And it undermines solidarity, because they define the proper channels of dissent and stigmatize more effective actions.
I think a lot about Peter Gelderloos and his new book, They Will Beat the Memory Out of Us is the name of the book. He talks about how any effective action we do will be criminalized. And I think that's a useful thing for thinking about bold action and about solidarity with people who do bold action. And liberalism tells us to stay away from bold action and kind of stay inside the lines and wait for billionaires or elected officials or a piece of legislation to save us.
I'll also say, when I think about this moment and the time we're in, the ecological crisis is worse than anyone talks about. And it's already here and will very much further disrupt and shorten our lives. It's too advanced to undo, even if every country on earth agreed to all the proposals people have made, and they're not going to. They're actually going in the opposite direction, especially here in the United States where we're about to do a lot more drilling and mining and fracking.
And I would say it's not a coincidence that countries aren't going in the right direction because that's not what countries are for. What they're for is extraction and elite rule. The point of countries is that a few people dominate almost everyone else.
And I think that's useful to remember that countries didn't exist, states didn't exist for most of human history. They are the most violent technology. They are the cause of ecological collapse, not the solution. Their job is to extract and concentrate wealth and keep everyone else under control.So they're not going to solve this for us.
And it's terrifying that so many people have been made to believe that states are what will solve our problems and care for us. And I would say this is like the biggest delusion that we're all under together, that the sort of societies we live in are under often.
So countries exist for domination, not care. And they do do small amounts of care for legitimacy and to quell resistance. You know, there are small amounts of healthcare programs or childcare programs or disability related programs. But the truth is that over the last half century, there's been a more open shift away from that and towards just directly controlling people with military, police, border.
The idea that they kind of haven’t — There's been a push away from soft control because all those welfare programs are also controlling. We all know — they tell us who's eligible, what you have to be like, what counts as sick or healthy, all of those kinds of racialized gender norms that are incorporated in those sort of caring programs — are a form of control. But even that has been kind of pushed away from, by the US government generally, and as they've moved towards just sharper, harder controls that are more naked.
So yeah, the point of this is: no one's coming to save us. We're all we've got. We're all we've actually ever had, of course. And the fantasy that someone's coming, to me, just keeps us from doing what is actually needed. And that, of course, is always direct action and mutual aid.
>> EMI: Thank you, Dean. We're going to hear from Gabriel now, from Long COVID Justice.
>> GABRIEL: Hi. Yes, can you hear me? Okay. Hi, I'm Gabriel San Emeterio. I am a light-skinned Mexican with dark hair. I'm wearing a black shirt and I have a white background. And in the interest of time, I'm just going to keep my answer short.
I would say that.. Yes, well, we're in uncharted territory because there's so many of the illusions we had of checks and balances that are gone now, and we're facing pretty totalitarian power. There are things that just kind of haven't changed, insofar as like, there have been diseases, complex chronic diseases, before that have been stigmatized and ignored, like ME/CFS.
I live with ME/CFS. I'm also a person living with HIV. And so Long COVID exists in this continuum of infectious associated chronic conditions, right? It's just the latest crisis, but it's not the only one. There's been others before.
And so we're really going to have to rely on each other in order to survive as our ancestors have, and that we stand on their shoulders. And I would quote Dr. Bernice Johnson Reagan, who said ‘If you're in a coalition and you're comfortable, you're not in a broad enough, you know, your coalition is not broad enough.’
So I think we are going to have to get into coalitions to survive, and we're going to be more than just uncomfortable. And we're going to have to be kind to each other and probably more tolerant, but unity and solidarity are going to be more important than ever. And I cannot stress, I cannot stress that enough.
And that means moving at the pace of our slowest, really considering and taking into account the voices of those who are most marginalized, and many times, homebound, because of the conditions that the pandemic has created or because of the limitations that their bodies impose on them.
Without them, we cannot move ahead and none of us will be free until all of us are free. I mean, corny as all that sounds, and it's been said before, but I think it bears repeating.
Thank you.
>> EMI: Thank you so much, Gabriel, and thanks to everyone else who spoke. We're running a little bit behind because we had some technical issues.
We're just going to go straight to the second question here, starting with Dean Spade. The question is: what are your hopes or intentions or provocations for the year ahead? What will you be doing and how are you going to approach the work that's in front of us?
>> MATEO: Sorry. Wrong video.
>> EMI: No worries.
>> MATEO: All right. Mercury is in retrograde.This is the right video. Give me two seconds. I thought that was the right video. This is the right video.
>> DEAN: All right. The second question I was asked to answer is about the year ahead. You know, as I mentioned at the end of my last answer, I think, you know, direct action, mutual aid are the center of what we need to do — which is not new, but feels even more urgent than ever. And especially connecting with people who are new to our movements, or newly angry and scared, and coming towards us.
So yeah, we need to stop our opponents and care for each other, meet each other's basic needs, engage in community defense against things like ICE arrests and raids, evictions, you know, criminalization. We need to feed each other. We need to support, you know, learn self-defense so we can support each other in the face of these vigilantes. We need to hide each other. We need to prepare for the coming disasters.
I get a lot of inspiration right now out of thinking about, like, it can feel so overwhelming that our opponents have all the money and the guns and they run all the institutions and you know for me the shift towards being like, all we have is all the people. All we have is each other. The fact that everyone on earth is losing from what's happening. And so I really like to think about examples where people use their numbers to stop something, even though it can be hard to think that way because right now a lot of people are demobilized, but I think that's possible that that changes if we organize together.
And I think a lot about the story that Vicky Osterweil told in her excellent book, In Defense of Looting, about the black bug squadrons in the 1930s that would — they were called that because there were a lot of Black communists and also other people.
It was in New York City, and people would find out that, like, someone is being evicted and they would go through the streets and get all these people to come out of their houses and they would all go to where the person was being evicted and they would stop it, with their bodies. They would outnumber the cops or marshals or whatever.
And they stopped tens of thousands of evictions in the period of the early 1930s. Like a third of New York City evictions, they stopped, during that period of extreme economic distress. And that is very moving to me. And I've seen people show up and try to stop sweeps of homeless encampments in lots of places. And I'm like, how many more of us need to get involved in that work to make that happen?
This kind of work, this kind of like direct support work, mutual aid work and community defense work, helps prepare us for the coming weather disasters, the fires, the floods, the storms, the smoke. It helps us know the vulnerabilities in our community, be ready to support each other and know how to share things. It's really, really important.
It also is a really vital entry point for people coming into our movements. Most people want to get involved in something where they can actually help one another and you know get kind of misdirected into symbolic action a lot or just doing things online or just signing petitions, and so how can we bring people into like, material transformative work that also builds the relationships and the skills to keep ramping up their participation in our movements.
All of this to me is about cultivating faith and hope in each other and the goodness of other people and generosity and courage and fighting together, even though we don't know how it's going to turn out. These are the kind of practices that this work can produce. Which is really hard because we've been raised in societies that tell us that we're all selfish and greedy and we can't trust each other and we need to compete.
And so it's a really big deal to move from having faith in elites, and in elite solutions, to having faith in one another and taking risks together.
One thing I think is really useful in this time is to always be asking ourselves whether the action we're about to take is solely symbolic or actually addresses material conditions. How to make sure we're not doing things based on a belief that we can convince elites to stop being who they are, that we can convince our opponents to stop harming us if they just knew the truth about how bad prisons are, how bad pipelines are, how bad war is. It's like, they know. They don't care.
And so I'm really interested in how we can move away from tactics that are symbolic, especially symbolic arrests. Kelly Hayes..
>> MATEO: So this means that I live in a rural area where my internet may have gone out. Unclear.
>> EMI: No worries. We're almost at the end of that. Do you want to try to make it go?
>> MATEO: I’ll reload and see what happens. Sorry y’all.
>> EMI: No worries. Maybe we could post those videos, like share the links to those videos with participants afterwards and we can move on, just in the interest of time, to Dr. Blackstock.
>> MATEO: That sounds good.
>> EMI: Okay, sounds good. Sorry, everybody. Mercury is really messing with us tonight. So Oni, do you mind speaking to that second question?
>> ONI: Sure.One concept that I learned recently that I really liked and folks may be familiar with already is thrutopia, T-H-R-U-topia, which is neither utopic nor dystopic. It demands that we look at what's right in front of us and recognize there's no easy escape hatch, that the only way out is through. It asks us to release both fantasies and despair.
And thrutopia implies engagement, the realm of meaningful practice, not mere pontification. It requires connection and creativity. And we probably need many, many thrutopias in the coming years.
And so I've just thought about, again what Dean was speaking to, in terms of connection and creativity —
Thrutopia, T-H-R-U-topia, so neither dystopia nor utopia. So when people say the best way to go is through. And so I've just been thinking about that. And I think many of the themes that Dean lifted up are going to be what we need.
I will also add that there is so much COVID denialism that we need to start talking, keep talking about COVID – coming together in different forms like this, doing storytelling — especially for policymakers. Lifting up, again, lived experience through storytelling, keeping Long COVID in the news, in the media, using our platforms to keep this conversation going because many people want to bury it and ignore it and act like this pandemic is not happening and that it hasn't been a mass disabling event. So, we have to keep speaking about it.
And I'm a healthcare provider, and so a lot of the work that I would like to do, again, is supporting my fellow healthcare providers in knowing how to care for Long COVID patients and building more of these medical providers of conscience that were mentioned before. We don't have enough Long COVID specialty clinics to meet the needs of our community. And so we're going to have to figure out ways to make sure that the larger community of physicians and physician assistants, nurse practitioners, other clinicians are educated to recognize and treat Long COVID. And so that's some of the work I'm thinking about.
And then just really quickly, I had mentioned the NIH, you may know that RECOVER funding that they have, which I don't know if it's going to be also at risk with the incoming administration.
But just even the fact — it’s wonderful yes that $500 million or however much has been dedicated to the study of Long COVID.
But the way the mechanisms of government take too long, and we need support now for people living with Long COVID, clinicians need to know now what to do to support patients.
So we need to really think of different models and different ways that we can begin to support this work at the local and federal level, for foundations to fund it, for us to come together to, if we are able to crowdsource funding, to get some of these answers that we need.
Yes, I agree, we need medical, nursing, healthcare professionals to all be really talking about Long COVID. And I would just say to any healthcare providers watching, the first thing is to always believe your patient, to say it out loud, that you believe them, that you hear them, that you hear what they're experiencing.
And if you don't know what you're doing, say, “I'm going to figure it out. We're going to figure this out together.”
So yeah, those are what I am holding. And again, that organizing, mobilizing, you know, recognizing and lifting up our interconnectedness and working as a collective are what we are going to need to get through this.
Also, just to say the Long COVID Justice page has so many great resources. So I know there are questions in the chat. So definitely folks check that out as well. Lots of great links.
Again, lastly, StopMaskBans.com is another great website. And then, you know, just in terms of working against implementation of mask bans and continuing to advocate for masking measures, particularly in healthcare settings as well.
Thank you.
>> EMI: Gabriel? You are muted.
56:17
>> GABRIEL: Yes. Hi. So what gives me hope in these times is people like Dr. Blackstock or people like Dean Spade, you know, they keep inspiring us and reminding us of what the way forward is.
And I am just so grateful that we have people like that in our community, and hopefully we can continue to listen to them and to platform them. For another example, I am so moved to hear Dr. Blackstock talk about how they deal with their patients and they believe their patients.
I have experienced the medical system with a complex chronic condition like myalgic encephalomyelitis, like it was said before 50%, about 50%, of people with Long COVID end up with something that it's ME-like or that it's an ME diagnosis, or it meets the diagnostic criteria.
So I have run into providers and my own HIV provider is very much like, I'll hear you and he believes me and everything and then when push comes to shove, then he'll just be like, I'm not an expert. You got to go. I can give you a referral.
In any case, if more doctors would be willing to just listen and probably go off the book and just prescribe, work with their patients, right? I know that the trans community, we're going to have to start doing that. We're going to have to start getting our medications and our needs met likely off the record. So mutual aid for as much as it signals a big failure of the state coming up against a previous functional state, it is also a source of hope and community.
I think it's okay to be afraid at this point because we don't know what's coming down. But fear can elicit many responses some of us might feel, and we can move through fight, flight, freeze. It's okay. And we can all hold each other depending on when we're at in these different stages but hopefully we’ll fight more than freeze or flight. Right. And we'll also make room for people to be able to freeze, we’ll hold them, we’ll make room for people to flight, to just dissociate, to care for themselves.
Yeah, it's going to be more important than ever to really remember to pace ourselves. The sense of urgency is going to be real, and we're going to need to rest. And stop, rest, pace is one of the strategies that gets the ME community and has gotten Long COVID patients to manage their symptoms. And I think it's going to be necessary also for able-bodied people to avoid burnout. We live in a culture that fetishizes burnout, and it's just – we can't afford to be there. We need to stay together and in a place where we're more productive.
I apologize for my rambling, but I'm feeling very symptomatic today. It's a long and rough day. I was at a meeting where we were doing HIV advocacy and I was surrounded by really incredible and amazing people. Dr. Oni Blackstock actually came up in the conversation. There was a slide with her picture.
It was a room full of advocates also wondering what's going to happen to us. Are they going to let us die? Are we going to let each other die? How are we going to move forward? And so I think these conversations are happening in many different spaces. We need to break the silos and definitely build cross movement solidarity.
And that's going to take being uncomfortable. Like people who don't want to mask, maybe you should mask even if it makes you uncomfortable, it might not be the best. It's not that hard. So come on, people, mask. It's for you. It's for others. And let's do it as it gets outlawed. You know?
>> VOULA: Gabriel, 30-second warning.
1:01:33
>> GABRIEL: Yes. So we're going to do a lot of the things that are going to be beyond uncomfortable because we're going to likely be afraid and we're going to have to hold each other. So let's learn how to do that with love. That's it.
1:01:53
>> EMI: Thank you so much, Gabriel. Really appreciate all the panelists being here, all the amazing questions that have come in. I've been following the chat intently this entire time.
So we're going to try to pull a couple questions from the chat. I know that I saw a lot of people – I'm sorry, and just for everyone for the transition – we're moving into the question and answer section.
We're really sorry that Dean cannot make it for this portion of the chat, but if there are questions specifically directed at him, feel free to put them in the chat and we'll try to get them to him.
But yes, I'm seeing a lot in the chat asking about recommendations for, somebody said, you know – what those who tend to be stuck at home can do? Are people feeling really shut out from organizing, and even community, because a lot of the spaces are not accessible, and don't include COVID precautions.
So I'm going to ask Gabriel and Oni to just reflect a little bit on what organizing community defense could actually – or needs to actually look like – in order to really include the realities of disabled and chronically ill lives?
And I’ll let one of you – Who wants to go first? Let’s hear from Gabriel first.
>> GABRIEL: Sure, I guess. I mean, I don't have a good answer. Unfortunately, this is the reality that we're in. I think we are going to have to do harm reduction as best we can. Like I said, I was earlier in a big, big meeting filled with people who are healthcare advocates, HIV advocates, and I have to say, there were only two people masking, myself and somebody else.
And this was a meeting about survival. And it was about people living with HIV. It was a lot of people living with HIV. It was people from the federal government, and nobody was masking. Sometimes we just have to show up and do harm reduction.
Mask as best we can, with the best mask that we can get, and help others get the masks that they need so that they can be protected. And figure out ways to include people's voices into conversations, even if they can't be there synchronously, like Dean, like Leah, they were included asynchronously so that's, unfortunately, I think, a way that we're going to have to proceed. We can't wait for everybody to catch up.
Because people are just all over the place. So harm reduction, harm reduction, harm reduction.
>> ONI: Yeah, no, I don't think I have anything else to add. I thought Gabriel's response was wonderful and — yes, I mean, have been in those situations where as a HIV care provider with other providers. And I'm like, am I the only one wearing a mask? But I think, you know, again, like, just continuing to model for other folks.
I know I was at a meeting actually, I don't know, the meeting you mentioned where my name came up, I'm not sure if that was Dr. Whitney Irie presenting. I'm not sure if that was another meeting.
But anyway, I remember as more and more people put — two people had masks on, then a third person, then a fourth person, like everyone. There was kind of like this wonderful sort of peer pressure that was happening. By the end of the meeting, it was a two-day meeting, everyone but one or two people had a mask on.
So I think all of what you said. And I think we have to sort of, yeah, harm reduction and then continue to beat the drum of what we need to do to protect one another, keep each other safe.
But it's challenging. And what we do say, I think there are some, like, small wins. Again, like I mentioned, like UCLA, they reinstituted their mask ban in a healthcare setting. I think people are seeing that we have to prioritize the care of each other, especially those of us who are most vulnerable.
I think someone had also asked about — and I mean, Emi, you may want to talk to this — there's so many wonderful resources on the Long COVID justice page. Someone had asked also about how do we come together in ways that, you know, for folks who may not be able to leave their homes or for whom going out is unsafe? I don't know if there are any, if like, you want to mention any of those.
>> EMI: We'll be sharing a resource list. And Voula, if you don't mind dropping in the chat like a link to our resources page.
But yeah, I mean, I was thinking, you know, as people were talking about how to get involved in, like, direct action or community organizing around some of this. There is a resource that I was one of the contributors to that Ejeris Dixon created and it's called 26 ways to be in the struggle without being in the streets. We can share that link.
And there are a couple of other things in there, but I think I agree with what both of you said. I mean, it’s about harm reduction. It’s also about finding the people who will, you know, maybe don't have Long COVID, aren't chronically ill, but will show up in masks. And it is true. It gives other people permission to start even allowing themselves to remember that COVID still exists, right?
So yeah, so we'll be sharing those resources in the chat and via email afterwards. And we do, we have a direct action toolkit as well — thank you, Voula — that includes tips for making protests accessible, some best practices for COVID-safer gatherings in person and online.
>> ONI: And there's some really nice — I see in the chat — someone said that they bring masks with them when they go out. They always have extras that they offer to other folks. So that's a really nice act of generosity and care for others.
>> EMI: Thank you both. We have so many good questions. There's one here that I feel like I want to ask both Gabriel and Oni because of your background with HIV advocacy and organizing and, you know, at Long COVID Justice, we do a lot of work through that lens, looking at the global HIV model and really looking at like what it can look like.
And JD always says this like, what does it look like when there are actual resources dedicated to addressing some of these issues? And HIV, you know, that we're at a point where there are significant resources, and we don't have the same thing for infection-associated chronic conditions. We don't have the same thing for Long COVID.
And so someone asked a really great question, which is: Looking back to the many organizing responses to the HIV/AIDS epidemic, is it worth it to expend our energy to try to get the state to care about COVID? Is it siphoning off energy that would be better used elsewhere? What didn't work and what have we learned since then?
So I know that's like three questions, but.
>> ONI: Yeah, and maybe it's like a both/and versus like an either/or, because I do think with the history of HIV activism, so much of all of what happened with HIV, what began at sort of a grassroots level, began with like mutual aid and peer to peer support.
And so much of that activism really pressured government and typically pressured the pharmaceutical industry. And here we are, with every six month injection that has like 100% efficacy to prevent HIV infection. But again, we have to deal with issues around access.
But just to say that we've had, even during the Trump administration, we had the Ending the Epidemic initiative started in 2019 during his last administration, which kind of boggles the mind.
But just to say, I think the continued and persistent sort of activism and advocacy in HIV community really did make a huge difference. I do also have to say that I think HIV did get more attention maybe than other conditions also because of who sort of visibly seem to be most affected at the beginning. So white gay men.
And then obviously now we have this browning of the epidemic, where it feels like people are, you know, there seems to be less investment. HIV seems to be sort of like more invisible.
And we saw this actually with COVID, right? Like when people learned that more Black and Latino people were being impacted, they were less likely to care about mitigation measures, things like that.
But I still think that, yes, we can, I think we need to do our own sort of community organizing and mobilizing. And I think we also have to push local, state level. We've had a lot of investment in New York State by the state and the city government in our work as well. So we're not just relying on the federal government, either. And I think obviously with this new administration we probably can't rely on federal.
>> GABRIEL: Yeah, I mean, to that, I would just add that it's interesting. There's so much that's being dedicated in terms of resources to the response to the HIV epidemic. And today there was a quality of life summit at the White House. And it's the first time in 40 years of the HIV epidemic that the government is actually considering and bringing in advocates to look at quality of life.
Right? Beyond the biomedical response. So it is amazing, it is amazing. I mean, just political time is just so slow. So we really need the advocacy and involvement of people with complex chronic conditions, particularly because we don't have tests like the test for HIV, right? HIV is like, you got it or you don't.
With complex chronic conditions, it's such a spectrum. There's just so much. It requires to trust the patient. And a lot of what affects us is really quite directly against capitalism, right? Like fatigue, pain, how do you believe people if there's no objective way to measure that? I think it comes down to that. With HIV, at the moment that they were able to say, yes, you have it, no, you don't. You're able to exclude or include a whole group of people into services, and you can't do that with complex chronic conditions.
So we need a more equitable system for everybody. And I think that's why we need to fight for those with complex chronic conditions, because that will improve life for everyone.
>> EMI: Thank you so much, Gabriel. So we have four minutes left until we're at our stopping time. I just want to quickly let people know that we might go over a few minutes with the Q&A into the open discussion time that we had allotted about a half an hour for.
And so.. You know, I mean, one thing I was thinking about is, you know, we're speaking on a day when the Supreme Court was hearing a case that could determine access to gender affirming care for many people in our communities, with pretty broad and serious implications. And it's a good reminder that the state will not save us. And that we need to prepare to organize community defense and mutual aid in more creative and urgent ways.
But at the same time, many people – as you've just spoken to – in our communities rely on those services and systems in the short term. And the terrain of our struggle and survival is definitely going to be impacted by changes at that level.
So as we're thinking about, like, access to health care and services from the state and other institutions – that's something we have to look at as we build and strengthen mutual aid and community care networks that have always helped us survive.
And I wanted to ask panelists what they expect to see in the coming years in terms of policy or other changes that might impact the ability of our communities to access the healthcare and services they need, what you're doing to prepare?
And as someone asked in the chat more specifically, like, are there steps we should be taking for our care — I assume just in order to access care or to prepare before the inauguration? So we're thinking very specifically about the change in the administration at the federal level.
>> ONI: Gabriel, do you want to go?
>> GABRIEL: Well, one thing that federal officials kept referring to today as we were planning for the future — they said that a lot of advocacy and continuing the work at the state level is going to be hugely important.
A lot of the things that are in place will continue to be funded for at least the upcoming year and maybe even more. And so how that money is used, where it's allocated, it gets decided a lot at the local level. So we really need to be involved in our communities and do the advocacy at the local level and at the state level. That was a big reminder from folks that are sort of federal employees and hopefully remain in their charges because we are trying to stay in touch with them but, that was a good thing.
In regards to the state, I mean, we have to remember like the state is spending our dollars. These are our taxes and we have to pay them no matter what. So we have to push them to spend them the right way and not in warfare, right? We want healthcare, not warfare.
>> ONI: Ditto everything Gabriel said.
>> EMI: I'm muted. Thank you for the reminder. I was just saying it's amazing. You two are a great pair.
And I'm excited to continue our conversations offline. We're almost at time, so I wanted to, you know, thank everybody. I'm thinking the whole time about something Leah said earlier that “I don't believe in utopia, but I believe in survival.” And I feel like these conversations are really just such a huge part of our survival and will be going forward.
So just so grateful to you all for being here. For those who want to stick around for the open conversation / meet and greet kind of discussion / hangout, stick around for everyone else. We're going to send you resources, links, and a recording of the video. We'll make sure to get Dean's second video to you in full.
And… That's it. Thank you so much for being here. And I'm going to transition the moderation over to Voula and Stefa. Thank you, everyone.
Stefa, do you mind playing the music while we transition out?
>> STEFA: Sure thing.
>> EMI: And maybe while we're here, Gabriel, I don't know if you can speak to this, but somebody said, can you go back to the question about steps we should take before January 20th?
>> GABRIEL: Will this continue to be recorded, the hangout time or..
Steps to take before January 20th? Hmm.
>> EMI: And this can be anyone. I mean, we can all, we're in a discussion. We're in an open discussion now so.. Yeah, I'm not sure — Voula, I want to defer to Voula and Stefa for the moderation but I think if other people have thoughts, I think people are sharing things in the chat.
>> GABRIEL: I almost feel like, I almost feel like — We did this webinar where we did this thing called pod mapping, which is actually — I am totally blanking out, but it's like a Bay Area collective...
>> EMI: Mia Mingus.
>> GABRIEL: Yeah, Mia Mingus — does this pod mapping where you like map out who you can rely on. So you plan on if you get sick, if you were in a crisis, who you could rely on. And it's not necessarily all your loved ones, or the closest people to you, because people react differently in times of crisis, right? So it may be people that maybe you're not that close to, but they might be willing to help you in a pinch, right?
So mapping out your community and who you're close to and start building those relationships. I mean, it's now more important than ever, right?
So maybe it's time for our pod mapping because we're all going to face, we're going to face a hostile more than openly hostile environment so we should plan ahead and map out: Who do we trust, who who do we rely on, we can.. who we can ask for help in a pinch, you know, who may be good for listening, who may be good for emotional support, etc.
Like trying to figure out these more pragmatic things, and also what can we do for others? Who can I be a support for? What kind of privilege do I have? How can I get something for somebody if necessary? I think these are important things to consider like stuff hits the fan, which will probably not be until like a few months in. But it's never too late to start.
>> VOULA: Hi y'all, this is Voula. I work with Long COVID Justice and I am feeling a special kind of way right now, which is like excited and inspired by all this brilliance. And also I've been like going between the chat and the Question & Answer doc and the run of show doc and setting timers so I can interrupt the speakers and adding resources to this other doc.
So I'm feeling a lot of things and I'm excited to be here with you for this sort of experimental situation that we are trying to do now, where we're having an open chat when probably lots of stuff is like bubbling up right now for everybody — both questions, and things that we want to share, and we're in different time zones and.. it's all a lot.
So we are going to try to find some way to keep this engaging and accessible, but we haven't quite done this before, but we wanted to suggest that people can put questions or offer resources in the chat. And again, we're going to pull everything that's been shared and send it out to you. So no need to grab it all now.
Oh, thank you for the supportive text and chat comments I'm getting.
So you can put.. I'm not going to look at the chat while I'm talking. Don't look at it. Okay, we're going to put, you can put questions in the chat or you can raise your hand.
Is the raise hand function turned on? In all our many things that we tried to do — Did we make sure that was turned on? Yes. Okay. You can raise your hand and we're going to ask / invite / request that people speak for three minutes or less. Just to try to give enough time for everybody who wants to share. And if we don't hit that tonight, we hope that there are lots of different ways that we can all stay connected.
I've put this in the chat a couple times, but here is a link to a document with some quick resources, including information about Trans Equity and Long COVID Justice, who are the two hosts of our event tonight.
And again, we will send that out to you, but it also has information on how to get involved, how to sign up for our lists, how to find resources, information about the panelists from tonight.
Okay. And Stefa and I are going to be working together on this. Stefa, could you please share the slide that has the access requests for this part of the night?
>> EMI: Well, I just want to flag that people are asking how to raise your hand.
>> VOULA: Oh, great question.
>> GABRIEL: You go and “react” on the little heart that's in the bar at the bottom. And it says “raise hand” when you click on the react on the little heart.
I also want to say I have not been paying attention at all to the chat because I can only do one thing at a time. Multitasking is a capitalist lie. So.
1:23:56
>> MATEO: That's okay. That wasn't your role. Can I share something super quick? I just want to name, as like we go into this section and we talk about mutual aid, that we're really, really clear that we have been in catastrophe for a really long time and folks have continued to show up with people that they didn't think they would show up for.
Right? Because when something actually happens, we're not sitting down to have a conversation about what our values are. We just show up. And so I want to invite us to think about what does it actually mean to be in community with people that we may not completely align with, but that we are responsible to and for?
And what does that mean for us as individuals and what does that mean for other people in this particular moment where we don't necessarily live next to our people. We're not necessarily in direct community, but we are directly in community with people that we don't… who maybe we wouldn't call our people, but they actually are because they are our neighbors. They are the people that we are responsible to and for.
And I just want to.. I want us to reimagine what that looks like in a moment where things feel so polarizing, where it feels like — actually in the catastrophes that we have seen in North Carolina and the catastrophes we've seen in Florida in so many spaces — people are showing up. And what does it actually mean to show up when we're not just talking about it, but we're actually living it? And like, I want us to think about that in this moment.
>> GABRIEL: JT. Oh, I did catch out of the corner of my eye that..
>> JT: Thank you.
>> GABRIEL: Oh, go ahead, JT.
>> JT: Oh, is that okay? All right. I just wanted to build off of that because that's what I've been thinking a lot about, in terms of we have.. You know, with Dr. Blackstock said about trying to do things a little bit more analog, as much as that's possible. And I really think that's important in terms of how we support one another without getting into like a purity politics.
Because I think when we're talking about the ways that government is failing us, that's going to be that's going to include all sorts of people who we don't always share values with.
And I do think that's something that I'm interested in trying to parse out because there's the mutual aid of that, but then there's also, there's also organizing for actions that — and organizing for mutual aid that — is not necessarily, like, lawful. And so how do you sort of acknowledge that people even who don't have your values need mutual aid? And also like create enough trust and support so that I'm not like going to get — somebody's not going to get me in trouble because I'm sharing a medication with somebody who needs it. You know what I mean? Like these types of things I think are are important to parse out.
I don't think I need to get along, or I don't think I need to align on all issues with all people but like these are these are some of the things that I'm sort of trying to sit with in terms of like movement building, coalition building, and also just getting to know my neighbors because honestly that's probably the most realistic thing for me at this point in terms of like the limitations that my disabilities, including Long COVID, have. Thank you. Thank you, everybody, for all your time. This is amazing.
>> EMI: Thank you so much. I was just talking to somebody before this panel about how the most robust mutual aid network that I've experienced is my local neighborhood Facebook group, you know, and it is not people who read the same things I do and certainly not people who really have an analysis about mutual aid.
>> GABRIEL: I just wanted to very quickly acknowledge that I saw it out of the corner of my eye somebody saying, like talking about multitasking as an ADHD, as an ADHD thing. And I have to say, yes, it's some people's superpower. Just like Leah said, you know, all the neurodivergent people who can do wonderful things and I admire that. I just can't do that and I think the problem with capitalism is just telling us that we all should do it. I think the people who can do it — absolutely go for it. But being forced into something that can't, that some of us can't do, that's where it's where the problem lies. But, thank you for the reminder that some people actually have these superpowers and can actually do more than one thing at a time.
>> STEFA: I believe Jules raised their hand, so Jules wanted to share?
>> JOOLS: I was wondering whether it would be viable or like fine to create like a little Discord for attendees to join and so we can have a space to communicate after the session —because I just noticed there was like 300 people at one stage, which would.. and a lot of people talking.. so I thought continuing conversations in a group setting might be really beautiful.
I created a little Discord, like a really quick little thing that I could link if that's something that people are interested in, but I'm not sure if that's something that's interesting.
>> VOULA: It looks like there is some interest in that, so we would love to share that with.. when we send out the resources. We also have resources on our page that has links to lots of different groups on Facebook and Discord, and some of them are affinity groups or identity-based and some are broader.
But yes, feel free to put anything in the chat that you want us to send out afterwards, because hopefully there's lots of ways that we can all stay connected.
And… I see that Deepa has a hand raised. Can we go to you next?
>> DEEPA: Yeah, thank you. Thank you for this, both the panel and creating the space afterwards. I really like this model of being able to sort of have a more informal chat at the end.
I just wanted to build on a little of what both Gabriel and Dean were talking about around ecological collapse, and also what JT was saying around building solidarity with communities that we might not necessarily always completely align with, but have some things in common.
And so I work in climate policy at the local level in Washington state and so I've just been thinking a lot about — and I have Long COVID — and thinking a lot about the sort of intersection around clean air and how that, you know, there's a lot of discussion around clean air when the pandemic started that faded away. And I just haven't seen enough of sort of the intersection of other ways in which we're being impacted by climate catastrophe be like folded into — at least in my work and where I am — be folded into advocacy around COVID and COVID protection.
And, you know, I think, mostly what I hear from folks in my everyday life is just that, you know.. First of all, it's a struggle even to get folks to mask, but masking is sort of the extent to which they're thinking about change and I'm fully, fully supportive of advocacy around masks and interested in engaging in it, but also how can we sort of think about these larger needs? Does that give us, you know, more points of solidarity to work on with folks who are experiencing pollution, and who we know are at higher risk of severe COVID impacts if they both experience air pollution and then get COVID?
So I know that's just one like area of interest, but just I think
it speaks to like this broader hope that I have on how we can marry climate justice work with Long COVID justice work. Not really a question, just wanted to sort of put that out there for discussion as well.
>> GABRIEL: Yeah. And I think you're absolutely right. I mean, some of the changes that could be implemented just need to be
a lot more than a lot more things that are under the control of individuals like air quality in buildings.
It's definitely a way in which we could keep each other safe, it's just much harder, but it's change that we definitely need to be pushing for. And I wonder if more people would get on board as, you know, they talk about the precarisation of life for like the middle class. And now we're seeing, in many urban centers like New York City, you see this luxury buildings around like the entrance of a tunnel, right? And so… like the air quality for these people in their luxury homes — it's terrible. And so maybe that's where we'll start to see some push for better policies in regards to like indoor air. But I wonder how long that's going to take.
>> DEEPA: I'll just pop in and add to that. Thank you, Gabriel. Yeah, definitely, definitely hear you on all of that and all of that makes sense. I guess folks have been talking about this in the chat, but I think thinking about the work that's being done by like clean air clubs and thinking about air filters and stuff as part of mutual aid as well, not just masks. So, I know that, you know, I'm familiar with various cities that have their own clean air clubs, but I really like that as a part of mutual aid as well.
>> STEFA: We have Jenni raising their hand.
>> JENNI : Hi, I just had a quick thing. I so appreciate in a lot of these like webinar-formatted events that there are growing efforts to give people ways to connect with each other after and to talk. And it's something that I really wish that in more of our local action spaces, you know, going to pro [unintelligible, video and audio are choppy here]… intersectionality and masking and there's people with a lot of desire to build more community and coalition. And all those things are talked about. Like, you know, somebody speaks about it.
But then when I actually try to build connection with the people there, it doesn't seem like there's a lot of bravery to try to make that happen in those spaces. So like, for people who are facilitating more local actions, I just want to add that like I'm feeling — and also hearing from other people — a desire for more pushes, or like gentle suggestions that we do try to build those connections and have more of this like sort of “Okay, now turn and like, let's have an informal chat” sort of thing for like in-person events as well. So for whatever that's worth. Thanks.
>> VOULA: I'm going to go back in time to something that we tried to do a few minutes ago which was to share the Access Requests for this section, and it seems like people are doing a good job in meeting them. I'm sorry we couldn't share this slide earlier, but I'm just going to share it now. And I will read the English, which is:
We just want to invite everybody to please do your best at following these practices..
So thanks y'all for trying to build more accessible futures together with us.
[overlapping audio]
>> VOULA: I love to see..
>> GABRIEL: I just… I just felt…
>> VOULA: Yeah, I love to see you putting it in practice. Sorry, Gabriel, go ahead.
>> EMI: Looks like Gabriel might be frozen.
>> VOULA: Yes.. I don't see any more raised hands. I see so much action in the chat that it is.. I'm trying to see if there's questions that people are putting in the chat that we should also share verbally, but I don't think I'm seeing any unless any of the other moderators are seeing them, but I'm seeing a lot of great other kinds of sharing.
>> STEFA: Someone just raised a hand if we wanted to go to C.
>> CG: This is CG talking. I didn't realize my last name was there, but okay. I just had a question kind of piggybacking off of what the last person just asked – Where's that line between inviting more people into direct action, and other types of like community building?
Like, I think they mentioned something about like after a protest or like how there's the Discord coming up after this type of webinar. And how do we walk that line of security and inviting people in who are newer to the movement?
Because I know a lot of barriers I'm faced when I first started was people didn't want to share because they didn't know who I was. So there's that level of security, especially in a like very potentially oppressive and police state?
>> STEFA: We have Galina who has their hand raised.
>> GALINA: Hey, I have a potential answer for that question. I organize with Mask Bloc Houston Texas, and we're also sort of like trying to figure out that balance between onboarding new people who, you know, may not be fellow anarchists or who may not share all of our points of values, while maintaining security and just like yeah, toeing that line.
And for us, it really feels like if you have people you organize with, I think it's important to like have a level of trust established, and to meet in person if you're doing work together — but also creating opportunities for new people who may not be… yeah, who may not be there yet, to kind of be in the space as well. And give people opportunities to onboard basically. But it is tricky to figure out, yeah, how to toe that line without just inviting absolutely anyone. It’s difficult.
>> STEFA: Jaclyn, if you wanted to share?
>> JACLYN: Yeah, hi. I have also organized with fellow BIPOC folks in my field of work. And we had to be really careful about online like zoom meetings even. And actually this happened with another Long COVID situation where the Zoom meeting was hacked.
So I would take some time to get to know who's already organizing, and ask them — and it doesn't even have to be around Long COVID it could be around anything in your community — you know, ask them what they know about the community, how you could help, and start making connections locally around different things.
And then I would also.. There's a lot of information from BIPOC organizers that have been organizing for decades and decades.
I would look online and look at — you don't have to reinvent the wheel — it's way less work and they've been kicking ass for a long time soI would look online to find some reputable kind of like community building resources that they've put out there.
Some of them are paid and so you might have to pay them for their labor, which is totally fair. There's a lot of free information out there too. Another thing to do is to.. like when you delegate with other people, like figuring out what is like a low risk delegation right, like and especially because it may not even be that someone's not the right fit safety wise, it could just be that like they're really excited, or but they don't end up having the spoons to do the thing that they thought they wanted to do, because of whatever disability they have.
And like, so that thing that you delegated might drop the ball you know and like.. so there's lots of room for error. And I think that being compassionate and making space for letting different people handle different things while still having like a core is really important.
And especially because it's really easy to get burnt out when you have a core and you're not delegating anything. And so it's also good for just for longevity
Another thing that you can do is go online and put up like either virtual or non-virtual events that could be super like basic like,
“We are going to make a list of the masks that we have in our area at the Mask Bloc, or something like super, super basic and just creating small little things to chip at things.. people that are interested might start coming in. You might have to do that on social media or put it up on bulletin boards and like maybe your college or something. But I would just start really small.
And there's a lot of like a lot of info like security stuff that you should do around like just internet hygiene, which is really important. So I would definitely look that up as well. A lot of sex workers are really good at figuring out internet hygiene. So I would look that up.
Like I said, you don't have to reinvent the wheel. Just look for people that are already doing the thing and find out how they're doing it. So those are my thoughts on that.
>> STEFA: Claire, if you wanted to chime in.
>> CLAIRE: Yeah, hey. Well, just thanks to the last person, I learned so much from what you said.
I'm pretty new to organizing work because of my own disability. But one thing that was really rad that the people in this local thing did was they had like everything is on like a Signal chat essentially. And so they had like an intro group that's pretty much anyone who expressed interest. And then they sort of like vet people by, Is somebody showing up to do things? Like are they kind of down with the anarchist stuff we're doing? And also like the last person said like, how committed do they want to be? If they want to be like more involved, then those people, those of us get moved to like a more kind of a smaller like super kind of dedicated group. So just a thought. I've experienced that as being really helpful.
>> VOULA: Thank you all so much. I see that we're at 8.31. Did we decide — I don't think I see any more hands. Did we decide we're going over a few minutes or is now our time to close it out?
If anyone has any burning comments..?
>> EMI: Just i'm noting to myself that we can include a bunch of resources around digital security and surveillance in the resources.
>> VOULA: Yes.
>> EMI: See Jaclyn has…
>> JACLYN: Yeah, I just want to share out loud what someone put in the chat which was: “Also remember that the fear of informants is a tactic, not just actual informants. When we are scared to organize, who wins?”
That was posted by Julie N. And I agree with that. And I also want to say that like, yes, informants can fuck shit up, but when it comes to like a full-on community, and you're doing shit and one person comes in to fuck shit up, there's still going to be that base of people that give a fuck and people that are still going to keep working, so just keep going.
>> VOULA: Thank you all so much. This has been a long and wonderful time together. I hope that even if you're feeling tired, you're also feeling refreshed or connected or some sense of community and mutual aid, because we know, you know, it's up to us.
We're going to keep on fighting and keep on loving and keep each other safe as much as we can, and keep learning from each other — and probably make some mistakes and hopefully keep learning together. I'm going to share in the chat, one more time, the kind of quick resource document that we made for tonight.
But again, we will be sending you more resources and you can also send us more resources at connect@s4hi.org. And we will send that out to you and I put it in the chat. We love resources.
And thank you so much. Extra huge shout out to the tech team and to Emi for moderating. Did you have any other closing comments, Emi, that you wanted to share? We're so grateful for the panelists and performers and to all of you for being here with us.
>> EMI: Yeah, and especially thank you to the person who made the Discord. I'll be joining that, and we’ll hopefully all stay in touch.
>> VOULA: And extra shout out to the interpreters and the CART folks. And we're so grateful for your support and to be here with you.
>> STEFA: I'm going to play some exit music as people leave the chat, feel free to keep interacting, we’ll leave the room open for a few more minutes.
END.